Sex and Disability

Sex and diSability
Sex and diSability
RobeRt McRueR and anna Mollow, editoRs
d u k e u n i v e r S i t y P r eSS
d u R h a M a n d lo n d o n
20 1 2
2012 Duke University Press
All rights reserved
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last printed page of this book.
ContentS
Acknowledgments/ix
Introduction/1
AnnA Mollow And RobeRt McRueR
Part i: aCCeSS
1 A Sexual Culture for Disabled People/37

tobin SiebeRS
2 Bridging Theory and Experience: A Critical-Interpretive

Ethnography of Sexuality and Disability/54
RuSSell ShuttlewoRth
3 The Sexualized Body of the Child: Parents and the Politics

of Voluntary Sterilization of People Labeled Intellectually
Disabled/69
Michel deSjARdinS
Part ii: HiStorieS
4 Dismembering the Lynch Mob: Intersecting Narratives

of Disability, Race, and Sexual Menace/89
Michelle jARMAn
5 That Cruel Spectacle: The Extraordinary Body Eroticized

in Lucas Malets The History of Sir Richard Calmady/108
RAchel oconnell
6 Pregnant Men: Modernism, Disability, and Biofuturity/123

MichAel dAvidSon
7 Touching Histories: Personality, Disability, and Sex in the

1930s/145
dAvid SeRlin
Part iii: SPaCeS
8 Leading with Your Head: On the Borders of Disability,

Sexuality, and the Nation/165
nicole MARkoti And RobeRt McRueR
9 Normate Sex and Its Discontents/183

Abby l. wilkeRSon
10 Im Not the Man I Used to Be: Sex, hiv, and Cultural

Responsibility/208
chRiS bell
Part iv: liveS
11 Golem Girl Gets Lucky/231

RivA lehReR
12 Fingered/256
lezlie FRye
13 Sex as Spock: Autism, Sexuality, and Autobiographical

Narrative/263
RAchAel GRoneR
Part v: deSireS
14 Is Sex Disability? Queer Theory and the Disability Drive/285

AnnA Mollow
15 An Excess of Sex: Sex Addiction as Disability/313

lennARd j. dAviS
16 Desire and Disgust: My Ambivalent Adventures

in Devoteeism/331
AliSon kAFeR
17 Hearing Aid Lovers, Pretenders, and Deaf Wannabes:

The Fetishizing of Hearing/355
kRiSten hARMon
Works Cited/373
Contributors/393
Index/399
aCknowledgmentS
In December of 2004 we had the honor of participating in a Modern Language

Association (MlA) panel, convened by Tobin Siebers, titled Sex and Disability.
As we prepared for our respective talks, querying our colleagues about their
favorite writings on the topic, it occurred to Anna: There should be an an-
thology on sex and disability. Robert, she immediately realized, would be the
ideal collaborator for such a project. Many people aided us in making this idea
a reality. From the outset, Lennard Davis enthusiastically supported the book.
We are also indebted to Elizabeth Abel and Susan Schweik, who offered encour-
agement and much valuable advice. The volume benefited immensely from the
feedback and critical suggestions of Ellen Samuels and Siobhan Somerville, who
each read the entire manuscript, and from Alison Kafers smart and incisive
comments on an earlier version of the introduction.
In 2006 our work on this collection was interrupted by a health crisis in
Annas life, which left her without housing for several months. For their gener-
ous friendship and support during this time, she is deeply grateful to Chris Bell,
Gretchen Case, Anne Finger, Alison Kafer, Marilee Nelson, Ellen Samuels, and
Josh Weiner. She also thanks her parents, Marie Ashe and Ben Mollow, for their
love and support. Nada Mills generously provided bodywork that enabled Anna
to write; without her help, this book might not have been completed. Warmest
thanks to Robert McRuer for sticking with this project, even when disability-
related obstacles threatened to derail it, and for his good humor about the con-
siderable effort it took to make our collaboration fully accessible. While a PhD
candidate in English at the University of California, Berkeley, Anna was privi-
leged to work with many wonderful teachers; she thanks Catherine Gallagher,
D. A. Miller, and Kent Puckett for their support. She is particularly grateful to
Susan Schweik, who introduced her to disability studies and whose brilliance,
intellectual and political rigor, and generosity continue to inspire her. Most espe-
cially, Anna extends her heartfelt thanks to her dear friend Jane Herman: for
friendship, love, and a home and for the innumerable kind ways in which she
supports her writing and political work.
Robert is grateful for the ongoing love and support of Joseph Choueike and
Tom Murray, which sustains him through every project he undertakes. For this
project, he feels particularly fortunate to have worked with Anna Mollow, one of
the most amazing editors, writers, and thinkers he knows. Her friendship and
support have been invaluable, and he appreciates especially her profoundly femi-
nist commitment to pushing him to have difficult conversations about sexuality,
gender, disability, and sex that he might otherwise have avoided. His colleagues
at the George Washington University have also been incredibly supportive of his
individual work, as well as the interdisciplinary work of disability studies more
broadly, and Robert particularly wants to acknowledge Jeffrey Jerome Cohen,
Holly Dugan, Jonathan Gil Harris, Jennifer James, Tony Lopez, Dan Moshen-
berg, Rachel Riedner, Gayle Wald, Abby Wilkerson, and Gail Weiss. The mem-
bers of the Washington, D.C., area queer studies group, DC Queer Studies, which
began meeting when this project was just beginning and which continues to
thrive, have provided friendship and intellectual support in innumerable ways.
Robert also wants to thank Khash Jallaei for bringing so much passion, joy, and
laughter to his life during the time this book was being completed.
Monica Bland, Judith Jenna, Elizabeth Thompson, Josh Weiner, and Emily
White provided top-notch research and secretarial assistance at various stages
of this project. Mandy Earley of Duke University Press was a dedicated and em-
pathetic supporter of Sex and Disability for most of its history, and we are grate-
ful that she was our associate editor before going on to continue her graduate
studies. Jade Brooks and Rebecca Fowler have continued the fine work begun by
Mandy, and we are very thankful for their efforts. We heartily thank Ken Wisso-
x Acknowledgments
ker for his strong commitment to this project from the beginning and for his
patience as we have moved it to completion.
To our contributors, for hard work, intellectual risk, and patience through the
many stages of revision, you have our utmost gratitude and admiration. Finally,
two people to whom we are deeply indebted, both personally and intellectually,
and whose influence can be felt throughout this book, did not live to see it com-
pleted. The passing of Chris Bell and Paul Longmore is an immeasurable loss to
disability studies and to the many disability communities that have been sus-
tained and inspired by their work.
Acknowledgments xi
anna Mollow and RobeRt McRueR
introduCtion
Sex and Disability: the title of this book unites two terms that are, if not anti-
thetical in the popular imagination, then certainly incongruous. The assertion
that able-bodiedness is the foundation of sexiness might seem self-evident. After
all, the sexiest people are healthy, fit, and active: lanky models, buff athletes,
trim gym members brimming with energy. Rarely are disabled people regarded
as either desiring subjects or objects of desire. And when sex and disability are
linked in contemporary American cultures, the conjunction is most often the
occasion for marginalization or marveling: the sexuality of disabled people is
typically depicted in terms of either tragic deficiency or freakish excess. Pity
or fear, in other words, are the sensations most often associated with disabili-
ties; more pleasurable sexual sensations are generally dissociated from disabled
bodies and lives.
But what if disability were sexy? And what if disabled people were understood
to be both subjects and objects of a multiplicity of erotic desires and practices?
Moreover, what if examining the ways in which these desires and practices are
enabled, articulated, and represented in various contextscontemporary and
historical, local and global, public and privatemade possible the reconceptual-
ization of the categories of both sex and disability? These are among the ques-
tions that Sex and Disability asks. The chapters in this bookin parts focusing
on access, histories, spaces, lives, and desiresdevelop analyses of the myriad
ways in which sex and disability, despite their segregation in dominant cultural
representations, do in fact come together.
aCCeSS
Sexuality, Anne Finger wrote in 1992, is often the source of our deepest op-
pression; it is also often the source of our deepest pain. Its easier for us to talk
aboutand formulate strategies for changingdiscrimination in employment,
education, and housing than to talk about our exclusion from sexuality and re-
production (9). Reflecting on this observation seventeen years later, Finger sug-
gested to us that sexuality points to our need for more than rights, for cultural
changesthe kind of cultural change weve seen in more recent years in the work
(writing, painting, performance, dance) of Eli Clare, Terry Galloway, Riva Lehrer,
Sins Invalid, Axis Dance Company, etc.1
The cultural change that Finger notes taking place in memoir, performance,
visual art, and dance has also been forwarded by some popular and academic
texts, which explicitly ponder either the complex meanings of sexual identity for
disabled people or, more directly, as in The Ultimate Guide to Sex and Disability,
the many different ways disabled people mightor dohave sex (Kaufman
et al.). The journal Sexuality and Disability has been publishing important work
by activists, sociologists, anthropologists, and others for many years (including
foundational work by Corbett Joan OToole, Barbara Faye Waxman-Fiduccia,
and Russell Shuttleworth); and in 1996, Tom Shakespeare, Kath Gillespie-Sells,
and Dominic Davies published The Sexual Politics of Disability, whichas the
subtitle to the book suggestedbrought to light many of the hitherto untold
desires of disabled people. A few anthologies particularly focused on the experi-
ences of queer disabled people have appeared over the past two decades, includ-
ing Raymond Luczaks Eyes of Desire: A Deaf Gay and Lesbian Reader, Victoria A.
Brownworth and Susan Raffos Restricted Access: Lesbians on Disability, and Bob
Guter and John R. Killackys Queer Crips: Disabled Gay Men and Their Stories.
And figures such as the uppity crip scholar-activist and sexologist Bethany
Stevens have begun to use the Internet as a forum for disseminating ideas about
sex and disability; according to Stevens, many of us shy away from the topics
her blog, Crip Confessions, centralizes, but we nonetheless crave space for rants
2 Anna Mollow and Robert McRuer

concerning disability, body politics, social movement capacity building, media
representation, body modification, sexuality, love, etc.
Still, the major texts in disability studiesthose that have become canoni-
cal in the fielddont discuss sex in much detail. Lennard Daviss Enforcing
Normalcy: Disability, Deafness, and the Body talks very briefly about the de-
eroticization of disabled people; Rosemarie Garland-Thomsons Extraordinary
Bodies: Figuring Physical Disability in American Culture and Literature makes
a similar point, positing a distinction between the erotic gaze and the stare
that is frequently directed at disabled peoples bodies. Important texts such as
Simi Lintons Claiming Disability: Knowledge and Identity and David T. Mitchell
and Sharon L. Snyders Narrative Prosthesis: Disability and the Dependencies of
Discourse primarily address questions about disabled cultures, identities, episte-
mologies, and discourses, not sexual acts and practices. And many of the major
anthologies in disability studiesDisability Studies: Enabling the Humanities;
The Body and Physical Difference: Discourses of Disability; The New Disability
History: American Perspectivesdo not include a single scholarly essay on the
conjunction of sex and disability; tellingly, if the conjunction is considered at all,
it is in a special section including fiction and poetry, as in The Disability Studies
Reader.
Additionally, the major texts in the much larger field of sexuality studies, in-
cluding those in queer theory, rarely mention disability. Some of this writing
seems to be on the cusp of an engagement with disability studies, and many dis-
ability scholars have productively drawn on the work of Judith Butler, Eve Kosof-
sky Sedgwick, Michael Warner, and others. But disability as a category of analy-
sis, or disability studies as an epistemological field, is only beginning to have an
impact upon queer scholarship. The one area in which sexuality studies more
broadly has considered the convergence of sex and disability is cultural theory
about hiv and AidS. From the beginning of the epidemic, gay men and their
allies knew that theorizing sex, physical impairment, and illness was imperative,
as activist interventions such as Michael Callen and Richard Berkowitzs How
to Have Sex in an Epidemic and scholarly essays such as Douglas Crimps How
to Have Promiscuity in an Epidemic illustrated. Yet despite AidS activists in-
debtedness to the disability rights movement, this work currently tends to re-
main at an uneasy distance from disability scholarship.
Our point here is not that theorists of sex and sexuality should be thinking
about disability all the time, or that disability theorists should be thinking about
sex all the time (although we dont want to not make these points). Rather, we
Introduction 3
wish to ask: what happens to our models, central arguments, and key claims
when we politicize sex and disability together? To address this question, we
begin by considering access, a core political and theoretical concept in dis-
ability studies and the disability rights movement. The term access is most
often invoked in reference to public spaces: movie theaters, restaurants, banks,
office buildings. What would it mean to apply the concept to the private sphere?
Can disabled people demand access to sexual experiences with others? To mas-
turbation? To reproduction? The three chapters in Access, the first part of this
book, address these questions. In the first chapter, A Sexual Culture for Dis-
abled People, Tobin Siebersbuilding on work by Waxman-Fiduccia, OToole,
and othersproposes that people with disabilities be considered members of a
sexual minority. Like other sexual minorities, Siebers points out, disabled people
are often regarded as perverted and are denied access to sexual experiences and
control of their own bodies.2 As Siebers observes, many people with disabilities
are involuntarily confined in institutions, where medical authorities make de-
cisions about access to erotic literature, masturbation, and sexual partners.
Disabled peoples access to sexual partners is further restricted by a perva-
sive cultural de-eroticization of people with disabilities. In the second chapter
of Sex and Disability, Bridging Theory and Experience: A Critical-Interpretive
Ethnography of Sexuality and Disability, Russell Shuttleworth, who developed
the concept of sexual access in his earlier work, shows here that this term,
by blurring distinctions between public activities and ostensibly private ones,
facilitates politicization of the latter. Explicating the methodology he used in the
mid-1990s to interview fourteen men in the San Francisco Bay Area with cere-
bral palsy, Shuttleworth illuminates the massive, sometimes nearly intractable,
barriers they encountered as they attempted to access sexual experiences. As one
participant put it, women seemed to be telling him: You can come in my house,
but leave your dick outside!
Although less tangible than a set of stairs in front of a building or the absence
of captioning on a movie screen, barriers such as these, the chapters in this col-
lection suggest, are just as pervasive and equally daunting. Michel Desjardinss
chapter, The Sexualized Body of the Child: Parents and the Politics of Volun-
tary Sterilization of People Labeled Intellectually Disabled, examines the insidi-
ous barriers that confront young adults with developmental disabilities. Even as
these men and women have access to sexual intimacy and romantic love, they
often undergo voluntary sterilization that ensures that intimacy and love
does not end in pregnancy.

In different ways, each of these three chapters invites us to ask: what does it
mean to use the concept of access when speaking of seemingly private issues like
sexual activity or parenthood? It is possible, of course, to argue that the term ac-
cess is best applied to only some forms of disability oppression. After all, one
can demand certain direct kinds of access to public institutionsa ramp to the
front door of a restaurant, an elevator within a hotelthat, obviously, one would
not make in regard to the bodies and choices of potential sexual partners. Fol-
lowing this line of thinking, it might seem reasonable to say that a film without
captioning is inaccessible to Deaf viewers, whereas one that provides captioning
but portrays deafor Deafcharacters as asexual or sexually unappealing is
not inaccessible but something else instead: controversial, offensive, ableist, or
provocative, depending on your point of view. The problem, however, with this
reasonable distinction is that it is almost inevitably a hierarchical one: on the
basis of their concreteness, their indisputable reality, we tend to accord more
importance to those forms of oppression we label access barriers than to the
more subtle ones that govern social and sexual encounters. The chapters in this
collection ask what it would mean to upend this set of priorities. What if dis-
ability scholarship made sex a primary concern, according it all the importance
of an access issue to be argued before the Supreme Court?
HiStorieS
In 1988, the disability scholar, historian, and activist Paul Longmore burned
his book on George Washington in front of the Social Security Administration
offices in Los Angeles. He did this in order to protest the agencys work disin-
centives: if Longmore earned royalties from his book, or a salary as a college
professor, he would lose Medicaid-funded equipment and services (including a
ventilator and personal attendants) upon which he literally depended to survive.
His protest signified in ways that reached far beyond what many might have
readand still might misreadas merely his own personal predicament: Long-
more demonstrated symbolically that the putatively private matter of disability is
in reality deeply political, caught up in long and complex histories of oppression,
exploitation, and resistance.
In Why I Burned My Book and Other Essays on Disability, Longmore situates
this particular instance of disability activism within the history of the disability
rights movement. As Longmore interprets it, disability activism since the 1970s
has had four key features. First, such activism redefined the problems faced by
Introduction 5
people with disabilities. It framed them as mainly social, not medical. It marked
as the most serious obstacle pervasive prejudice and discrimination. It presented
as the appropriate solution civil rights protection (109). Second, disability activ-
ism shaped coalitions with other new and progressive social movements. Third,
it fashioned ties across disability lines (109). Finally, and arguably most impor-
tant, disability activism produced an unplanned politics of identity, a posi-
tive disability identity that showed societyand [activists] themselvesthat
people with disabilities were not feeble but strong, not incompetent but skillful,
not helpless but powerful (110). According to a historiography that disability
studies and the disability rights movement have made familiar, disability iden-
tity, forged in the context of other new social movements and emerging from a
disability movement explicitly focused on civil rights, led to the passage of the
Americans with Disabilities Act (AdA), which was signed into law by President
George H. W. Bush in 1990.
And yet a peculiar, and also decidedly unplanned, politics of identity has
shadowed the AdA and similar civil rights legislation. Disabled people and their
allies have been dismayed to witness courts extremely narrow and rigid inter-
pretations of the AdA, which have drastically limited the laws scope and efficacy.
In 1999 Ruth Colker analyzed the corpus of AdA cases that had come before the
court. Her findings were consistent with those of the American Bar Association
less than a year earlier: in 94 percent of federal AdA Title I decisions, employers
won (Krieger 67). Disabled plaintiffs most often lost their cases not because
the accommodations they sought were determined to be unreasonable, or to
impose undue hardship on employers, but because the courts decided that
the plaintiffs did not qualify as disabled. For example, in its decision in 2002
in the case of Toyota Motor Manufacturing v. Williams, the U.S. Supreme Court
ruled that an assembly-line worker with carpal tunnel syndrome and other pain-
ful musculoskeletal impairmentswhich limited her ability to work, shop, do
housework, and play with her childrenwas not a person with a disability
(Krieger 13; Diller 68). As numerous observers have pointed out, the courts ex-
traordinarily narrow definition of disability has created a double bind for anyone
seeking protection under the AdA: a plaintiff who does manage to convince the
court that he or she is a person with a disability will likely have great difficulty
meeting the laws requirement that he or she also be an otherwise qualified
individual (Hahn, Accommodations 4748; Krieger 10).
Linda Hamilton Krieger observes that Congress wrote the minority group

model of disability into the AdAs preamble (12). That preamble states that
people with disabilities constitute a discrete and insular minority historically
subjected to purposeful unequal treatment (qtd. in Krieger 12). Yet in Trustees
of the University of Alabama v. Garrett, the Supreme Court ruled that disabled
people do not constitute a protected class under the Fourteenth Amendments
Equal Protection Clause (Krieger 1011). Therefore, Krieger concludes, Garrett
represents a judicial backlash against the minority group model of the AdA (12).
Both Kriegers argument and Longmores historicized analysis of the emer-
gence of disability identity are compelling and important. However, we wish
here to complicate the framework for interpreting what Krieger aptly names the
backlash against the AdA. Following Longmore, we do so by attending to the
ways in which disability identity is always historical. Disability identity, in other
words, is never simply a natural fact; it is, rather, made and remade in historical
circumstances and by historical agents. Thus, like Krieger, we locate the Courts
pattern of ruling against disabled plaintiffs within an ongoing history of struggles
around disability identity. Yet our analysis differs from Kriegers in that we see
the backlash against the AdA as arising less from a theoretical rejection of a mi-
nority group model than from an excessive upholdingan extreme and even
punitive applicationof constructions of people with disabilities as members
of a discrete, insular minority group. After all, in Toyota v. Williams and many
similar cases the courts do, in fact, define people with disabilities as comprising
a discrete minority groupto which specific plaintiffs are then determined not
to belong. Granted, the courts are not allowing that disabled people are political
minorities, as the drafters of the AdA had intended. Yet a minority model of dis-
ability is nonetheless clearly in operation in AdA case law; it provides the explicit
foundation for much of the judicial backlash against the AdA. This point is cru-
cial: it should press us, we believe, to ask difficult questions about the minority
group model and about the ways that model moves through history and through
authoritative institutions.3
In asking such questionsas we will do throughout this introductionwe
will be grappling with the often vexed relationship between personal experience
and political analysis. Longmores burning of his book is one of many instances
in which disability scholarship and activism, seeming to draw on the second-
wave feminist insistence that the personal is political, have demonstrated that the
cordoning off of certain categories of experience (such as sex and disability)
as private matters is itself a profoundly political act, with often insidious effects.
Introduction 7
We engage these crucial insights here, at the same time that we also engage politi-
cal and theoretical approaches that trouble the concept of identityand thus,
perhaps also, of personal experience. In many contexts, the claim that the per-
sonal is political has had the effect of placing womens experience at the center
of feminist political analysis; but in others, such as women of color feminism, the
construction of woman as a primary or foundational identity has persuasively
been challenged, long before the moment in 1990 when Butler asserted that it
is no longer clear that feminist theory ought to try to settle the questions of pri-
mary identity in order to get on with the task of politics (Gender Trouble xi).
This complex feminist legacy pushed us to wonder, as we began drafting the
introduction to this volume in the summer of 2007, whether material from our
own histories might have a place in it. In an e-mail to Anna regarding this pos-
sibility, Robert wrote:
I understand what youre saying about personal experience, although I

also feel somewhat wary of that, given the confessional culture we inhabit
and how that culture of confession is linked to truth (especially on the sex
side) and authenticity (especially on the disability side). However, I find it
intriguing that, as editors, we occupy, in a way, mirrored positions (I will
complicate this momentarily, but for now bear with me): in theorizing
about sex, its hard to deny queer theory has a certain pride of place, and
hard to deny, despite queer theorys anti-identitarian bent, that real les-
bians and gay men, with lesbian and gay identities, have done a lot of that
labor over the past few decades. In theorizing about disability (or even the
body more generally), its hard to deny, well, disability studies a certain
pride of place, and hard to deny, especially with the emphasis on identity
and experience in the field, that real disabled people, with varied experi-
ences of impairment and disability identities, have done most of that labor
over the past few decades.
So, in a crude, reductionist sense that is bigger than both of us, we end
up on two competing sides of our title, Sex and Disabilityeach of us
could, two-dimensionally, be taken by those who dont know us well as the
main representative of one side of the binary. But Id say, of course, that as-
sessment immediately elicits a yes, but from both of us, about both sides
of that supposed binary. Given your inner lesbian and given the identity-
disintegrating aspects of sex and queerness generally, its easy to bump me
from representativeness on the Sex side. But Im cautious of ceding the

representative side of Disability wholly to you, at the same time that Im
cautious of not ceding it to you, for all sorts of sedimented disability his-
tory reasons.
What claim could Robert make that would allow him to dislodge Anna from her
apparent position as the main representative of Disability? Im not disabled,
he wrote to Anna, and would never cavalierly claim that as an identity, in part
out of respect for histories of oppression that are not mine. And yet, he con-
tinued, I do want to be clear: I could claim it. Robert went on to cite some of
the evidence (the evidence of experience) that would back up the I claim in
relation to disability that Im actually not making. A few entries from Roberts
nine-item numbered list:
1. I have at least once had a mental health professional suggest drugs for
ocd, in the context of two-year long therapeutic relationship. . . .
3. I have sometimes literally boarded a plane early on disability in order

to be able to fly comfortably (and I saw this as an accommodation prob-
ably because of my disability studies work).
4. Often when Im on a flight, I can tell you exactly the number of five-
minute segments we have left before the plane lands, AS well AS what
was happening in the same number of five-minute segments, back-
wards. That probably doesnt even make sense, so to concretize it: at
a certain point, I could tell you, 37 five-minute segments to go and
could give you a general sense what had been happening 37 five-minute
segments in the past. Of course this is partly contingent on whether we
were in a period, during the flight, when I allowed myself to look at my
watch (the rules for all of this get very complicated).
Despite the body of evidence Robert cited in support of an identity claim he

could make, he nonetheless resisted making it, not only because, as he put it, I
really do respect that Im not disabled and that I have all sorts of able-bodied
privilege, but also because of feeling that [such a claim] is insufficient (per-
haps necessary but insufficient) for getting at certain ways of thinking about the
body, mind, and behavior. Meaning generally, but also specifically, my body, my
mind, my behavior.
In regard to Sex, Anna occupies a position that mirrors Roberts relationship
to Disability. She wrote:
Introduction 9
Id say Im somewhere between straight and bisexual, and I dont feel com-
fortable with either term. To say Im bisexual seems to take something
away from LGBT people who are oppressed in ways Im not. Yet its not
quite accurate to say Im straightand to do so is to pass in ways I also
dont feel comfortable with, both because of the heterosexual privilege it
confers and because of the ways it risks limiting my own sense of whats
possible, what I might desire. (Since this e-mail of 2007, Anna came out
as a lesbian.)
Despite her discomfort with making a claim to a minoritized sexual identity that
some might regard as tenuous, Anna nonetheless found herself asking, after she
read Roberts list of evidence in support of a minoritized disability identity
claim he did not wish to make: Robert, why dont you come out? While the
reductiveness of her query was tongue-in-cheek (having been on the receiving
end of this question herself, she knew how annoying it was), Anna was serious
in asking, why not identify as disabled?
Weve begun answering this question here: trepidation about laying false
claim to histories of oppression, as well as a reluctance to simplify complex ways
of thinking, feeling, and behaving. To this we would add another danger, which
begins to point us back toward the authoritative discourses and institutions and
the legislative and judicial double binds with which we opened this section: the
risk of reifying identity categories that might better be contested. As Robert re-
marked about the experiences hed listed in support of a hypothetical identity
claim: Looking back at that list I just gave you: were I desiring to claim any kind
of authenticity (and remember, Im not), the therapist (and even the former lover
I told you about who is a doctor) are the ones giving most credence to that claim!
Troubling, in some ways, no? Troubling because, in this instance, an identity
claim such as Im disabled; I have obsessive-compulsive disorder would be
tied, inescapably, to medical discourses (and diagnoses) both of us perceived as
specious. A likely effect of such a statement, in this instance, would be to uphold
the power and authority of institutionsmodern Western medicine and psy-
chiatrythat have generated and policed the normal/abnormal binary that has
been fundamental to disabled peoples oppression.
Anna does claim the identity disabled, and this claiming has been a vexed
and complicated process. She has been disabled since 1994 with a set of inter-
related impairmentsenvironmental illness (EI), upper and lower back pain,
and repetitive strain injurywhose intensities have varied over the years. In
March of 2006, after what had seemed to be a six-year disappearance, Annas

ei recurred, forcing her to leave her graduate studies at the University of Cali-
fornia, Berkeley. ei (which is also called multiple chemical sensitivity, or McS)
means that hundreds of substances in everyday life make Anna ill: chemicals in
soaps, laundry detergents, perfumes; cigarette smoke; car exhaust; newsprint;
magazines; paper; ink; paint; carpet; new clothing; natural gas used in furnaces
and stoves; plastics; upholsteries; lawn chemicals; cleaning products. In search
of cleaner air and a safe place to live, she moved to Santa Rosa, where she con-
tinues to live with her close friend Jane, whom she met through an online list for
people with ei. Like many people with ei, Anna is also sensitive to the electro-
magnetic fields, or eMFs, that electronic appliances emit; she is therefore unable
to use a computer. These impairments, combined with a repetitive strain injury,
have made continuing her graduate studies impossible.
In her chapter My Body, My Closet: Invisible Disability and the Limits of
Coming-Out Discourse, Ellen Samuels observes that people with invisible dis-
abilities, although often criticized for passing or failing to come out, are in
fact required to come out repeatedly; because others assume they are nondis-
abled, they must regularly identify their unseen impairments and explain their
effects. By coming out in the context of this introduction, Anna makes a claim
that, she expects, will function differently from the one Robert refrains from
making. If to say I have obsessive-compulsive disorder might in this instance
call up the authority of medical institutions, saying I have environmental ill-
ness has the potential to contest this authority. This is because, for the most
part, mainstream Western medicine does not recognize as legitimate impair-
ments that cannot be diagnosed with conventional medical tests. People who
have ei (or similarly controversial impairments, such as fibromyalgia, chronic
fatigue syndrome, or chronic pain) are therefore often regarded as malingerers
or hypochondriacs. The withholding of a legitimate medical diagnosis has con-
sequences that extend far beyond the office of the doctor who says, All your
tests are normal; youre perfectly healthy. For most people with impairments
that manifest neither visible bodily differences nor abnormal test results, it is an
ongoing struggle to obtain disability benefits, access employment accommoda-
tions, or persuade family members and friends that they really are disabled.
In coming out here, Anna risks that you, the reader, will, like the health
care practitioners, court justices, and others who have the authority to confer or
deny disability status, count her as not an authentic person with a disability.
This possibility points to another problem with identity claims: the inevitability,
despite the intentions of those forging these identities, of exclusions. Taken
Introduction 11
together, many influential texts in the field of disability studies can be said to
have codified a model identity of a disabled person, who has certain crucial char-
acteristics: his or her body manifests visible difference; physical suffering is not
a primary aspect of his or her experience; and he or she is not seeking cure or
recovery. In these ways, what might be seen as disability studies construction of
a paradigmatic disabled person differs from the self-understandings of many
people with chronic pain and illness.4 Thus, Samuels writes that disability studies
focus on visuality and the gaze sometimes leads me to question if my extremely
limiting and life-changing health condition really qualifies as a disability accord-
ing to the social model (Body 248).
The discursive marginalization of people with unseen illness may have ma-
terial effects. For example, while the disability rights movement has succeeded
in making requests for wheelchair ramps and American Sign Language (ASl) in-
terpretation seem, at least in some contexts, reasonable, the accommodations
that a person with ei might need to request are most often regarded as wildly un-
reasonablein the senses both of This is too much to ask and I dont under-
stand why you would need this. In order for workplaces or other public spaces
(including disability organizations) to be made accessible to a person with ei,
he or she must make the seemingly impossible request that these environments
be free of: toxic cleaning products; new building materials, furnishings, carpet,
and paint; air freshener; perfume; dry-cleaned clothing; scented skin lotion, hair
products, and deodorant; and many other common chemical substances.
I have to say, Im feeling some bitterness about my career, Anna confessed
to Robert as they sat in her backyard in 2007, catching up on their personal lives
before preparing to outline this introduction.
You know, thats sex, as well as disability, Robert remarked.
Why is it sex?
Because what you miss is a range of erotic connections. They may not be
sexual ones, but theres the sexiness of mingling with minds and bodies at con-
ferences (and Im not just talking about conference sex!), the thrill of generating
energy and knowledge; theres a libidinal investment in all of this.
For Robert, as with Anna, the lines separating the categories of disability
and sex are sometimes blurry. In the course of editing this book, he wrote to
Anna about a man hed recently met: There are 15 days left before I see him
again. I will wake up tomorrow and there will be 14 days left, and on Thurs-
day there will be 13 days left, meaning, that as of Thursday, Ill have only one
Wednesday to sleep through without him. And then on Friday . . . well, you get

the idea. Was this simply a normative case of lovesickness? Or, when read in
and through Roberts other mental eccentricities, might it not be interpretable
as disability, a form of sexual obsession or ocd? Rather than choosing one side
of a binary division between normality and disability, we instead emphasize here
the value of keeping these terms fluid and contestable. Alongside a politics of
identity that has successfully shaped minoritized communities and civil rights
strategies, a post-identity disability politicsin which what is interpretable as
disability need not be tethered to a disabled identityenables sitings of dis-
ability in multiple, often unexpected, locations, rather than solely in the bodies
and minds of a few individuals.
Embracing a post-identity politics of disability means conceiving of ei (to
take one example) as more than the basis of some North American individu-
als disability identities. In her essay Toxic Animacies, Inanimate Affections,
Mel Chen undertakes this work. Chen intersperses personal narrative about her
difficult negotiations of public spacesher attempts to avoid inhaling cigarette
smoke and car exhaust as she walks down the street or to effect a smile from
behind the mask she must sometimes wear when shoppingwith an analysis of
the ways in which the notion of toxicity circulates in global contexts (275). For
Chen, telling her own storyin ways, she writes, that consider toxicity as it has
profoundly affected my own health, my own queerness, and my own ability to
forge bondsis necessary in order to counter readers likely presumptions that
the bodies she writes of enjoy a state of mythic health, unadulterated by toxins,
and cognitively clear (273). Yet even as her story of personal disability in part
authorizes the questions about global toxicity and us that she asks (how is it
that so much of this toxic world . . . laden with injurious chemicals . . . is encoun-
tered by so many of us as benign and pleasurable? And how is it that we are doing
this, doing all this, to ourselves?), Chen also immediately notes such a we is
a false unity (276). Chen is not, she implies, among those who find themselves
on the underside of industrial developmentwomen hand-painting vaporous
toys by the hundreds daily without protection; agricultural workers with little
access to health care picking fruit in a vapor of pesticides, methane, and fertil-
izer that is breathable only in a strictly mechanical sense; people living adjacent
to spewing factories installed by a distant neocolonial metropolis or downwind
of a refinery . . . in the abjected periphery of a gentrified urban center (276).
Chens nuanced consideration of the relationship between her own disability
and the broader social context in which this disability takes shape has much
in common with what Roderick A. Ferguson defines as a gestural mode of
Introduction 13
conceiving of identity (143). A gestural conception of identity, Ferguson argues,
animated women of color feminism in the 1970s, in which identity politics was
about pointing away from the self to the complex array of relations that consti-
tuted the social. Identity politics as it evolved over the next few decades became
more emulativeanimated, that is, by a pointing not outward toward the so-
cial world in which identities are constantly shaped and reshaped, but instead
inward, toward the self or, as we suggested above, toward representative iden-
tities.
Fergusons argument about the complexities of the now much-maligned
identity politics of the 1970s pushes us to link, rather than oppose, the work of
scholars such as Longmore and Chen. Longmore approaches disability identity
historically; whether writing or burning his book, he is engaged in an exami-
nation of cultural values regarding disability and their relationship to social ar-
rangements, public policy, and professional practice (5). Such textured exami-
nationsexaminations of the movement of disability through historyhave
been among the primary conditions of possibility for post-identity analyses such
as Chens or our own.
Each of the chapters in Histories therefore engages both the making and un-
making of disability, sex, and identity. Michelle Jarmans chapter, Dismember-
ing the Lynch Mob: Intersecting Narratives of Disability, Race, and Sexual Men-
ace, investigates (as Chens work does) the ways in which racialized and disabled
identifications have intersected and altered each other. Focusing on the southern
United States in the late nineteenth and early twentieth centuries, Jarman en-
courages us to understand the ways in which what she terms menacing mascu-
linities were constituted through both racialized lynching narratives and nar-
ratives highlighting the eugenic threat of feebleminded men. Although these
discourses are generally cast as unrelated, Jarman exposes the ways in which the
narratives used to justify and normalize the brutal torture, murder, and bodily
destruction that came to define white-on-black lynching are historically inter-
woven with eugenicists construction of cognitively disabled men as social men-
aces in a broad sense, but most threatening as sexual predators.
Underscoring that neither sex nor disability carries static, transhistorical
significations, Rachel OConnell, in That Cruel Spectacle: The Extraordinary
Body Eroticized in Lucas Malets The History of Sir Richard Calmady, analyzes
a Victorian novel vividly detailing the sexual experiences of its visibly disabled
protagonist. Investigating divergences between historical and contemporary
understandings of sex and disability, OConnell asks how changing conceptions

of what Garland-Thomson terms extraordinary bodies have contributed to the
novels declining fortunes. Malets novel, which was published in 1901, was a best-
seller in its era; it is all but forgotten today.
Moving thirty-five years forward, Michael Davidson, in Pregnant Men: Mod-
ernism, Disability, and Biofuturity, focuses on another novel, one that is not at
all forgotten but that has not hitherto been read through a disability studies lens.
Examining Djuna Barness Nightwood, which was published in 1936, Davidson
focuses on the figure of the pregnant manspecifically the eccentric figure of
Dr. Matthew OConnor. Davidson reads Nightwood not as a baroque anomaly
among stream of consciousness narratives of Woolf, Stein, or Faulkner, but as
arguably the representative modernist novel insofar as it offers an inside narrative
of individuals interpellated within biological and racial science. Figures of male
pregnancy have at times been read as simply relocating (or, in the case of male
authors, appropriating) gestation. Historicizing the eugenic logics in circulation
at the time of Nightwood s publication, Davidson instead crips modernist male
pregnancy, reading it as marking for Barnes what he terms a diaspora of sexual
and gendered possibilities among bodies and minds of various abilities and cog-
nitive registers.
As the century continued, sexual identities and orientations, as well as iden-
tities connected to disability or handicap, continued to congeal, but often in
contradictory ways. In Touching Histories: Personality, Disability, and Sex in
the 1930s, David Serlin examines an early twentieth-century personality study,
The Personality and Sexuality of the Physically Handicapped Woman. Locating
this little-known study within two histories that might be understood as op-
posed, the history of the mid-century obsession to identify and categorize per-
sonality types and the more anti-identitarian and affective history of touch,
Serlin provides rich evidence of disabled women intimately familiar with so-
matic dimensions of desire and pleasure. The subjectivities discernible in The
Personality and Sexuality of the Physically Handicapped Womansubjectivities
consummated through unquantifiable acts of touchare, in Serlins analysis,
compellingly confounding.
SPaCeS
The chapters in the third part of this book consider the spaces (geographic and
discursive) in which disability and sex materialize, the boundaries that demar-
cate those spaces, and the punishments that ensue when these boundaries are
Introduction 15
transgressed. The part begins with Leading with Your Head: On the Borders of
Disability, Sexuality, and the Nation, by Nicole Markoti and Robert McRuer,
who investigate the uses of nationalist discourses in Murderball, a film released
in 2005 that documents an ongoing rivalry between American and Canadian
quadriplegic rugby teams. Markoti and McRuer examine the ways in which ex-
plicit discussion of sex in Murderballsex that is in some ways legible as non-
normativepotentially (but only potentially) disrupts the more direct thrust
of the narrative, which moves toward a masculinist incorporation (into the na-
tion) of the proper disabled citizen-subject. Markoti and McRuer contrast the
citizen-subjects spectactularized representation in the ludic space of the film
(particularly his flexible capacity for crossing national borders) to the lived ex-
periences of nomadic, queer, disabled subjects facing policing and surveillance
at and around national bordersin particular, in relation to resources (including
health care) perceived as national property.
In Normate Sex and Its Discontents, Abby L. Wilkerson considers connec-
tions among global transgender, intersex, and disability identities and political
movements. Developing a notion of what she terms normate sex, Wilkerson
considers transgender, transsexualism, and intersexuality both as departures
from normate sex and as sites where a more critical sense of sexual interdepen-
dence might be forged. In her analysis of the ways in which Western medical
authority travels (often coercively), Wilkerson argues that studies of medical-
ization in international contexts should recognize and foster the potential for
agency in cultural exchange. Considering, for example, gender liminal Polyne-
sians who identify as faafafine (like a woman), Wilkerson attends to the ways in
which numerous groups articulate their own experiences and forge alternatives
to normate sex. Faafafine, she suggests, may develop their own alternatives to
both Western medical and political norms and to their own traditional gender
categories. Indeed, as Wilkerson demonstrates, a wide range of interdependent
intersex and trans erotics actively resist the varied forms of oppression gener-
ated by normate sex.
In Im Not the Man I Used to Be: Sex, hiv, and Cultural Responsibility, the
late Chris Bell considers the effects that two legal cases in Atlanta had on his self-
understanding as an hiv-positive sexual subject. In the first case, in September
of 2003, Gary Cox, the deputy assistant to Mayor Shirley Franklin, was convicted
of soliciting paid sex acts from a minor (Cox maintained his innocence even as
he was sent to prison). Cox was hiv-positive, but his hiv status did not play a
major role in the arbitration or representation of this case. In a second legal case

discussed by Bell, Gary Wayne Carriker, a medical student at Emory, was con-
victed in March of 2005 of felony reckless conduct for having sex with another
man without disclosing his hiv-positive status. Bell analyzes the reasons that
hiv-positive status was central to Carrikers case but insignificant in Coxs. He
then carries this consideration of spaces of sexual risk and surveillance in Atlanta
to a reflection on his own status as an hiv-positive African American man nego-
tiating similar spaces.
By writing in a scholarly book about intersections of sex and disability in his
own life, Bell took considerable risks. For although terms like libidinal, erotic,
sex, sexual, and desire circulate widely within academic discourses, these
terms usually dont refer directly to any particular academic writers own ex-
periences. Indeed, personal or explicit discussion of sexor, to some extent,
disabilityarguably marks writing about these topics as extra-academic. Bob
Flanagans graphic writings and performances about sadomasochism and cystic
fibrosis, for example, make him a popular figure for disability scholars to ana-
lyze but preclude interpretation of his work as itself an example of disability
scholarship or theory. And while several prominent disability scholars have writ-
ten (usually in memoirs or other venues not marked as scholarly or academic)
about the effects of disability on their marriages or family lives, this personal
writing most often makes little mention of sex.
What space couldor shouldpersonal writing about sex have in disability
studies? As we ruminated together about this introduction, the question came to
preoccupy us: what would it mean to disclose, in this space, personal informa-
tion about sex and disability? Early in our discussion with each other, wed begun
exchanging e-mails about our own experiences with disability and sex, hoping
they would yield insights we could incorporate here. Wed quickly generated a
large volume of material that wasto us, at leastprovocative and highly stimu-
lating. But most of this writing, we immediately saw, would be inappropriate to
include here, or in any scholarly book or essay. Inappropriate is precisely the
term we want to use: notions of professional propriety were very much at work
in our decision to exclude from this introduction most of our personal writing
about sexwriting that, frustratingly, we valued in part because of its impro-
priety. This impropriety, we felt, had the potential to disrupt a liberal conception
of disability as squeaky-clean and respectable, of a disabled subject eligible for
marriage and parenthoodand presumably, therefore, sex, but sex that is dis-
crete, private, proper.
As we considered the status of the personal in scholarly analyses of sex and
Introduction 17
disability, we divided potential revelations into three heuristic categories or
spaces: the proper, the permissible, and the punishable. The personal material
we did, in the end, include in this introduction falls (we hope) under the rubric
of the permissible. What separates the permissible from the punishable? Cer-
tainly, we inhabit a confessional culture; in many spaces and genres (a memoir,
performance piece, journal, or therapy session), personal revelations about sex,
far from being punishable, instead seem nearly compulsory. Why, then, would
the same revelations clearly be punishable in an academic context? Part of the
answer, as weve said, lies in the bourgeois notions of propriety that infuse all
professional spaces, including academia. A related bourgeois value or impera-
tive, that of work, or marketing the body as an instrument of labor rather than
an instrument of pleasure, is also relevant (Marcuse 116; qtd. in Floyd 123). That
is, while a story about ones own sex life might make perfect sense in, say, a per-
sonal essay, it would be hard to identify any function or purpose a similar act of
publicizing might serve in a scholarly piece of writing. What you do in your pri-
vate life is your business, a reader of an academic essay might say. Why are you
telling us this here? Indeed, as we argue in the rest of this introduction, the line
between which revelations about sex and disability are permissible and which are
punishable has much to do with work: what functions they might serve, to what
uses they might be put.
liveS
Each of the three chapters in Lives performs or analyzes autobiographical writ-

ing about sex and disability. We begin our discussion of disability, sex, and life
writing with a pair of stories from our own lives. The first is Roberts; the second
is Annas.
I go jogging every other day, a quintessentially able-bodied activity, one

could say. That is, if one wanted to picture able-bodiedness, a snapshot
of a runner would serve as well as pretty much anything. But in general
my running also comes with elaborate rules about when I turn or reverse
course, when I look at my watch, how the scenery gets framed as I do
laps, etc. I did have a sexual encounter with a guy who watched me jog-
ging, however. It was a few summers ago, in Malcolm X Park (also known
as Meridian Hill Parkthe name one uses tends to be connected to ones
politics!). His name was Mario or Marco or something like that. And

he watched me running. And it was very pleasant. And as I did laps, he
started to sort of gesture, Come on, lets go. And I was not in the least
averse to the thought. But then I couldnt stop and talk to him until I had
ritualistically finished my running in the ways that it ritualistically needed
to happen. He was gone by the time I finished, but as I walked back home,
he pulled up alongside me, I got in, we went to my house, and had great
casual, one-time sex. This is the same park, incidentally, where late one
night I got punched out by a group of teenage boys.
The second time I was confronted about parking in a handicapped spot

was right after I moved to Berkeley, in the parking lot of Andronicos (a
nearby grocery store). This woman had all these pride stickers on her car:
disabled, Jewish, queer. And she was yelling at me. Nobody, she said,
looking me up and down, nobody who looks as good as you can be dis-
abled! I was twenty-nine years old, wearing a sundress and high-heeled
sandals. You need to educate yourself about invisible disability! I said.
You need to educate yourself! she shot back. I walked away, shaking and
feeling sick to my stomach. I really did need that parking spot; I was in too
much pain to walk through even the whole grocery store. But what I hate
most about my memory of that moment was that a little part of me sort of
liked it: in a way, I liked the idea of looking too good to be disabled, had
even been working at looking that way.
To an observer of these scenes, one would seem to be solely about sex; the other,
about disability. But Roberts sexual encounter initiated in the park is, as his nar-
rative makes clear, about disability also. In Annas story, too, both sex and dis-
ability are at stake. The confrontation over her right to park in a disabled spot
and by extension, to call herself disabledwas played out in reference to sex.
If Anna looked too good to be disabled, and if she had in fact been cultivating
such a look, it was as if her self-presentation had been designed to say, Im too
sexy to be disabled.
Samuels points out that although the option of passing as nondisabled often
produces a profound sense of misrecognition, it also offers a certain level of
privilege (239). The privilege that comes with not looking disabled is exposed
and analyzed in Riva Lehrers Golem Girl Gets Lucky, which is the first chapter
in Lives. Lehrer writes: All women know that the sidewalk is a catwalk. From
before the first faint ringing of puberty we are judged on the quality of our flesh.
Introduction 19
And my entry in the pageant is a body thats more Z-shaped than S-curved.
Visibly disabled womens exclusion from the catwalk, Lehrer perceptively ob-
serves, arises from the fear that our unbalanced shapes hint of unsanctioned
desires. On both sides of the bed.
The threat that disabled bodies might experience and elicit unsanctioned de-
sires is mobilized to the advantage of the narrator of Fingered. Lezlie Fryes
story begins with an interpellation, delivered sly and emboldened and triple-
dog-daring style, dripping with eight-year-old arrogance in the bulk bin aisles
of the Pc market on Franklin Avenue. Your hand is so freaky, you are a freak!
Fryes speaker takes on this eight-year-old boy, while his mother stands ner-
vously in the background. Responding in kind to his aggressiveness, Frye boldly
calls forth the unacknowledged eroticism that animates the common experience,
for many people with disabilities, of being put on display, made to answer to the
invasive desires of others: I will them to imagine all the places my hand has
been, between which cracks suiting just its shape, into which crevices only it can
fit . . . I let my hand hang, taut and heavy before their gaze, erect, bent, unpre-
dictable. Fryes hand is queer: born to be inside of cunts, she reminds herself
as she faces the child and his mother. Thrusting its potentialities into this boys
awareness, Frye refuses to submit to the imperatives of what Lee Edelman calls
the disciplinary imagine of the innocent Child (No Future 19). Indeed, her
verbal combat with the boy is evocative of Edelmans contention that queerness
names the side of those not fighting for the children (No Future 3).
Queerness and disability again come together in Sex as Spock: Autism,
Sexuality, and Autobiographical Narrative. In her reading of autobiographi-
cal writing by people with autism spectrum disorder, or ASd, Rachael Groner
finds many parallels and convergences with queer theory. For example, the au-
thors of ASd autobiographies often emphasize the unstable and fragmentary as-
pects of subjectivity. It took me [until age ten] to realize that normal children
refer to themselves as I, writes Donna Williams, one of the autobiographers
whose work Groner analyzes. Authors of ASd autobiographies also highlight the
performativity of many gendered and heterosexual conventions (for instance,
they carefully study and attempt to master the bizarre-seeming rules govern-
ing dating and sex among neurotypical people). Commonalities between ASd
autobiographies and queer theory may be linked to interconnected histories of
surveillance and disciplining of homosexuality and autism. For example, ap-
plied behavior analysis, or AbA, an accepted contemporary practice that uses

aversives such as slaps, pinches, and electric shocks to compel children with
ASd to behave in normal ways, was also employed in the uclA Feminine Boy
Project in the 1970s, and the work of its proponents continues to influence the
ex-gay movement.
A Washington Post article from 2007 reminds us that in multiple locations
in the United States, adults, too, are compelled to behave in normalthat is
to say, not queer or disabledways. The Post story, about locations similar to
the public toilets in which former Senator Larry Craig was arrested for allegedly
soliciting public sex, mentions the same Washington, D.C., park in which Robert
picked up Mario (or Marco) and where, incidentally, he was assaulted the fol-
lowing winter. The experts quoted in the article describe anonymous sex in
public places as a compulsive behavior (a form of ocd, perhaps?). The article
reports that U.S. Park police spokesman Robert Lachance, when asked about
police activity in and around Malcolm X Park, would not discuss enforcement
activities there (Duke and Brown).
The stories from our lives that we adduce in this introduction, like each of the
pieces in Lives, address dangers, both physical and psychic. Yet despite the risks
they describe and may perform, the narratives of Roberts encounter in the park
and of Annas confrontation in the parking lot nonetheless seemed safe enough
for inclusion here. That is, we felt fairly confident that, of the three heuristic cate-
gories we sketched out abovethe proper, the permissible, and the pun-
ishablethe permissible would be the one into which most readers would
place our vignettes. The reason, we decided, that our stories would likely not be
deemed punishable has much to do with a particular kind of work they could
be called upon to perform. If we were to distribute either of the stories, without
commentary, to the participants of a disability studies seminar or conference,
we could envision three broad categories of responses: one would consolidate
identity through a process of exclusion (some people are disabled; others arent,
even if they may have impairments); another would seek to expand identity cate-
gories in the interests of inclusion (we need to speak about disability oppression
in ways that legitimize the experiences of invisibly disabled people and those
with cognitive and psychiatric impairments); and a third would desire to move
away from identity as the foundation or organizing principle for analyzing dis-
ability (we should center our analyses of disability less on individuals identities
than on the social, economic, and discursive contexts in which these identities
and experiences materialize).
Introduction 21
This broadly schematized spectrum of modes of understanding disability in
relation to identity has much in common with the minoritizing and univer-
salizing conceptions of homosexuality that Eve Kosofsky Sedgwick analyzes in
Epistemology of the Closet.5 According to Sedgwick, a minoritizing view sees the
issue at hand as of active importance primarily for a small, distinct, relatively
fixed . . . minority, whereas a universalizing view sees an issue of continu-
ing, determinative importance in the lives of people across the spectrum (1).
While Sedgwick notes that she sympathizes more with universalizing analyses
of same-sex desire than with minoritizing ones, her stated aim is not to adju-
dicate between these two ways of thinking about homosexuality over the past
century, but rather to highlight the ways in which the shuttle between the two
models invariably results in what she calls the minoritizing/universalizing im-
passe (90). Both homophobic and antihomophobic discourses routinely, and
sometimes simultaneously, make use of minoritizing and universalizing claims,
Sedgwick notes. Rather than privileging one of these modes of analysis over the
other, the more promising project, for Sedgwick, would seem to be a study
of the incoherent dispensation itself, the indisseverable girdle of incongruities
under whose discomfiting span . . . have unfolded both the most generative and
the most murderous plots of our culture (90).
A similar incoherence can be read in contemporary discourses on disability,
and we argue that a study of the incoherent dispensation itself is similarly a
promising project for disability studies. Ableism often takes the form of minori-
tizing statements: disabled people are fundamentally different from normal
people and should therefore be segregated from the rest of society in special
schools and institutions. But it also frequently invokes universalizing models of
disability: everyones a little disabled, really; we all face physical and mental chal-
lenges, but these can and should be overcome with hard work. Similar contradic-
tions are legible in anti-ableist discourses. Minoritizing claims are foundational
in disability studies, which, as noted earlier, has often defined people with dis-
abilities as members of a distinct minority group. Yet universalizing claims also
abound in the field, such as the oft-cited observation that well all be disabled if
we live long enough. Following Sedgwick, then, we might say that although we
too sympathize more with universalizing analyses of disability, were less inter-
ested in aligning ourselves monolithically with any of the three positions on dis-
ability identity weve schematized above than in considering the ways in which
the two stories we include here, about sex and disability in our own lives,

lend themselves to citation in support of any of these seemingly contradictory
Much of the import of Annas story hinges on the notion of a minoritized

positions.
disability identity: her insistence that she really is disabled and her reactions
to having that claim denied. And even as Roberts story undermines the view of
disability as the concern of a distinct, relatively fixed minority, the legibility of
his narrative could still depend on a minoritized sexual identity, if it is connected
to the pleasures of being recognized in public as a sexually available gay man
(and even if, for both parties, sexual identities were not necessarily known
a fact which itself likely intensified the fantasies in circulationthe encounter
still took place in a recognizably gay Washington, D.C., neighborhood). Thus,
although we highlight the porousness and instability of disabled and gay iden-
tities, we are unable to displace them completely; indeed, even as we exchanged
these stories privately with each other, our narratives could not proceed with-
out references to these identities. And so we find ourselves at a minoritizing/
universalizing impasse: while we acknowledge the importancethe necessity,
evenof the work of claiming (or abstaining from claiming) identities, and of
analyzing the privilege and oppression that such claims and abstentions entail,
we also find this work constraining and insufficient. Insufficient partly because
the purview of identity-centered analyses is so limited; they tell us primarily
about an individual, or a group of representative individuals (gay people, in-
visibly disabled people). In the remainder of this section, we attempt to read life
writing about sex and disability in ways that exceed these identifications.
In both Roberts and Annas stories above, disability and sex threaten the dis-
solution of each other. In one, disability makes sex less efficient (Come on, lets
go, the guy in the park gestures, but Robert ritualistically finishes his running)
and even threatens its curtailment (he is gone by the time Robert completes his
laps). Conversely, sex in this story threatens disability, by rendering it illegible.
To a witness of the exchange in the park, disability would be nearly impossible
to spot, in part because the image of a sexually attractive jogger serves so easily
as the very picture of able-bodiedness.6
In other words, a polarization, in the cultural imagination, between sex and
disability means that each of these terms potentially disables recognition of
the other. If theres disability, according to ableist logic, then there cant be sex
(hence, the tragedy of a beautiful woman in a wheelchair); and conversely, if
theres sex (a casual encounter initiated in a park), then presumably there is not
Introduction 23
disability. This dichotomized construction of sex and disability is also at work
in the story of Annas confrontation in the parking lot, in which conventional
markers of sexiness (sun dress, high heels) preclude recognition of disability
(Nobody who looks as good as you can be disabled!).
Disability and sex, then, often threaten to unravel each other. Yet we might
also read these two stories as showing, paradoxically, that sex and disability can
enable each other. To illustrate this, let us return to the Washington Post article
that mentions Malcolm X Park and quotes experts who describe anonymous
sex in public places as a compulsive behavior. Reading Roberts story through
the lens of this expert diagnosis, we can say that disability (compulsion) is
precisely what makes sex happen. Without disability (compulsion, obsession,
addiction), there would be no sex (at least in Malcolm X Park, according to the
experts). In Annas story, too, disability can be read as making sex possible. That
is, disability (needing that disabled parking spot) enabled an exchange that, al-
though this would not occur to Anna at the time, was in some ways erotic. After
all, an experience that, for many invisibly disabled people, is among the most
painfulthat of being disbelieved, deemed not really disabledconverged in
the parking lot incident with one that, for many people (whether disabled or not)
is among the most pleasurable: being looked up and down and found to look
good.
We find both pleasure and promise in reading sex and disability in these
expansive ways. An advantage of a fluid understanding of disability is that, by
enabling its siting in a multiplicity of unexpectedand often pleasurable
locations, it subverts the popular conception of disability as individual and
tragic. And a benefit of thinking of sex as more than a set of genital actsand
sexuality as more than a set of predefined identitiesis the potential for con-
testing the common cultural assumption that disabled people are not sexual. If
we understand sex as more than penetration that occurs in the bedroom, then we
can perceive sex and disability coming together in many places we might other-
wise have missed them: a heated exchange in a parking lot, a caress on the back
of a neck, an online chat mediated by voice-recognition software.
This is precisely the work many of the selections in Sex and Disability per-
form. The authors of these pieces show that sex is at work in a variety of cultural
objects and practices not usually regarded as erotic: the use of a squeeze ma-
chine to calm the anxiety associated with autism or of a blanket to cover and
uncover the legs of a visibly disabled protagonist of a nineteenth-century novel;

the insertion or removal of a pair of hearing aids; the display of a hand marked
as freaky; the orgasmic bliss that might be achieved by sliding down a banister.
deSireS
Men and women, women and men. It will never work. Erica Jong
Under the Social Security Act, disability means inability to engage in any substan-
tial gainful activity by reason of any medically determinable physical or mental im-
pairment which can be expected to result in death or has lasted or can be expected
to last for a continuous period of not less than 12 months. Social Security Network
[The AdA] does something important for American business, though, and remember
this: youve called for new sources of workers. Well, many of our fellow citizens with
disabilities are unemployed; they want to work and can work. And this is a tremen-
dous pool of people.
President George H. W. Bush, on signing the Americans with Disabilities Act
A man is a worker. If he is not then he is nothing. Joseph Conrad
In the final section of this introduction, we reflect upon the relationship between
sex and disability and work: work in its literal senses of employment and labor
and also in some of its more figurative significations of efficacy, productivity, and
use value. We argue that thinking about sex and disability in terms of whatand
whodoes or does not work opens up avenues for continuing dialogue between
queer theory and disability studies. Such dialogue, we hope, will make evident
the potential queerness of much disability activism, as well as the desirability of
valuing illegitimate (perhaps impossible) ways of being disabled; ways, that is,
that do not, cannot, or will not work.
Questions about legitimacy and illegitimacy are everywhere in queer theory
right now. Indeed, we might even go so far as to diagnose the field as obsessed
with what wont work. More specifically, much of the most influential writing in
queer theory can be said to analyze, or even impossibly argue for, an illegitimate
sex that does not work: on behalf of capitalism, marriage and hetero- or homo-
normativity, or the production of socially valid gay and lesbian identities. A pas-
sage from Butlers Undoing Gender is worth quoting at length:
The stable pair who would marry if only they could are cast as illegitimate
but eligible for a future legitimacy, whereas the sexual agents who function
outside the purview of the marriage bond and its recognized, if illegiti-
Introduction 25
mate, alternative form now constitute sexual possibilities that will never be
eligible for a translation into legitimacy. . . . This is an illegitimacy whose
temporal condition is foreclosed from any possible future transformation.
It is not only not yet legitimate, but it is we might say the irrecoverable and
irreversible part of legitimacy: the never will be, the never was. (106)
Even as some sectors of neoliberal capitalism embraceor at least tolerate

what Butler might call recognized, if illegitimate alternative identities such as
gay, lesbian, and even bisexual or transgendered, queer theorists have
argued for other ways of being that refuse or negate that tolerance or embrace,
that seem to desire what Butler calls the irrecoverable and irreversible part of
legitimacy: the never will be, the never was.
Suspicious about work as we think we know it and sex as we think it works,
materialist critiques in queer theory look critically at the dominant lesbian and
gay movements rush to market, marriage, and the military. Critiquing what she
terms a middle-class logic of reproductive temporality, Judith Halberstam ob-
serves that people who live in rapid bursts (drug addicts, for example) are char-
acterized as immature and even dangerous (Queer Time 45). Halberstam sug-
gests that ravers, club kids, hiv-positive barebackers, rent boys, sex workers,
homeless people, drug dealers, and the unemployed . . . could productively be
called queer subjects (10). To us, Halberstams invocation of addiction and hiv
as potentially constitutive of queer subjectivities exemplifies a pattern of ap-
proach and avoidance that characterizes much of queer theorys relationship to
disability analysis. Drug addiction and hiv-positive serostatus are, according to
most paradigms, categorizable as disability. Yet their frequent appearance in
queer theoryalong with other pathologized conditions, such as schizophre-
nia, psychosis, or alcoholism, that are seen as foreclosing possibilities of so-
cial legitimacyis seldom accompanied by any sustained engagement with dis-
ability studies. To put this slightly differently, we might ask: what is gainedand
lostby referring to hiv-positive barebackers and drug addicts as queer
subjects rather than, say, disabled subjectsor crip or queercrip subjects?
Queer theorys frequent references to disability are fitting, since the acts and
desires that queer theory invokes to describe lives outside the purview of legiti-
macy often carry associations with medical terms and paradigms: in contempo-
rary Western cultures one is not merely a pervert; one can be diagnosed with
sexual compulsivity, gender identity disorder, masochism, sadism, obsessive-
compulsive disorder, paraphilia, or addictionor, in common parlance, one

is unhealthy, unstable, oversexed, sick. Given that, as Halberstam puts it, we
pathologize queer lives and desires, it is surprising that queer academic writ-
ings about legitimacy almost never explicitly engage with the field of disability
studies.
Perhaps this gap in queer theory is partly related to a lacuna within disability
studies: a queer theorist turning to disability studies in order to buttress, com-
plicate, or extend her or his discussion of the pathologization of queerness might
be disappointed to discover that the illegitimate figures that populate queer aca-
demic discourses (addicts, crazies, compulsives, sick people) appear infrequently
in disability studiesand are seldom held up as models of proud disabled identi-
ties.7 Susan Schweik, arguing that a history of disability on the street that ignores
the traces of substance abuse is an impoverished one, remarks that boozefight-
ers are [hard] to claim as disability culture heroes, even of the romantic outlaw
sort (106; 107). Conversely, we might note that in some strands of queer theory
it is especially the romantic outlaw sort of disability that gets marked as queer.
If in these contexts addiction or mental illness can be read as queer, then why
not those paradigmatic impairments disability scholars such as Anita Silvers
invoke: paraplegia, blindness, deafness (77)?
Relationships among queerness, disability, and illegitimacy are the focus
of Anna Mollows Is Sex Disability? Queer Theory and the Disability Drive,
which is the first chapter in Desires. Mollow posits that influential arguments
by the queer theorists Leo Bersani and Lee Edelman regarding the antisocial and
identity-disintegrating aspects of sex have important implications for contempo-
rary theories of disability. Highlighting frequent references to disability in Ber-
sanis and Edelmans discussions of sexuality and the death drive, Mollow intro-
duces the term disability drive, which describes a structural similarity that she
identifies between the concept of sexuality, as it is elaborated in psychoanalytic
theory, and disability, as it is represented in the cultural imaginary. Respond-
ing to Bersanis and Edelmans embrace of the death drive in relation to queer-
ness, Mollow proposes a similar embrace of a disability drive. Such an embrace
would likely have delegitimizing effects for disability theory; it would undercut
assertions of proud and positive disabled identities, insisting instead on the ways
in which disability and sexuality, as imbricated concepts, entail a rupturing of the
self or a disabling of the category of the human.
In the second chapter in this part, An Excess of Sex: Sex Addiction as Dis-
ability, Lennard Davis analyzes the emergence of the diagnostic category of sex
addiction in both popular and medical discourses. In doing so, Davis shows that
Introduction 27
queer theorys critique of the marriage imperative is an important concern for
disability studies as well. Davis illuminates the ways in which heteronormative
cultures positing of marriage (or other forms of stable monogamy) as the privi-
leged locus of healthy sex functions to pathologize, or disable, sex that occurs,
as Butler might put it, outside the purview of the marriage bond and its recog-
nized, if illegitimate, alternative form (Gender Trouble 106). Constructions of
both queerness and disability are thus at work in the creation of the disease of
sex addiction, even though those who are definedand define themselvesas
sex addicts most often do not claim either disabled or gay identities.
Alison Kafers Desire and Disgust: My Ambivalent Adventures in Devotee-
ism, through an analysis of the phenomenon of amputee devoteeism, also
brings queer theory and disability studies together. Amputee devotees are people
who have a strong sexual preference for people with amputations. Devotees por-
tray themselves as members of a sexual minority whose desires have been pa-
thologized. Kafer writes of the conflict she feels between her sympathy with a
group whose desires have been cast as illegitimate and her simultaneous discom-
fort with the many ways in which this group (comprising mostly heterosexual
and, often, heterosexistmen) attempts to legitimize its desires. Devotee dis-
courses often authorize exploitation and harassment of disabled women, and
although participation in amputee-devotee communities can be affirming and
financially rewarding for some women and does seem to counter the pervasive
cultural desexualization of disabled womens bodies, devotee discourses none-
theless have the effect of ultimately reinforcing this desexualization. This is be-
cause devotees writing about amputees constructs and depends upon what Kafer
calls a desire/disgust binary, according to which the presence of an amputation
makes a woman either desirable (to devotees) or disgusting (to everyone else).
The final chapter of Sex and Disability, Hearing Aid Lovers, Pretenders, and
Deaf Wannabes: The Fetishizing of Hearing, by Kristen Harmon, pushes the
concept of disability fetishism even further. Beyond a consideration of people
who sexually desire disabled bodies, Harmon studies the discourses of a commu-
nity that finds erotic appeal in the possibility of becoming disabled themselves.
The online special interest group whose postings Harmon analyzes includes not
only deaf fetishists (who are sexually attracted to deaf or hard-of-hearing people)
but also pretenders and wannabes, who derive excitementoften marked as
eroticfrom the idea or experience of deafness. Some members of the group
have deafened themselves and integrated themselves into Deaf signing commu-

nities. The volume thus ends, paradoxically, with a group contemplating, or en-
gaging in, the process of claiming disabled identities but doing so in illegitimate
ways; ways, that is, that many would necessarily read as (we might as well com-
pulsively repeat ourselves) unhealthy, unstable, oversexed, sick.
Insofar as the four chapters in Desires underscore the illegitimacy (or, we
might say, the queerness) of the coupling of sex and disability, we read them,
taken together, as forwarding an implicit critique of queer theorys frequent eli-
sion of the queerness of disability. In most queer theory, it seems, the sex lives
and erotic representations (or lack thereof) of amputees, deaf or Deaf people, or
people with paralysis have no particular connection to queerness. Conversely,
we might also read these four pieces together as containing a challenge to some
strands of disability scholarship and activism that seem to us to elide the sexiness
of their own projects. According to Tom Shakespeare: Sexuality, for disabled
people, has been an area of distress, and exclusion, and self-doubt for so long that
it was sometimes easier not to consider it. . . . Ending poverty and social exclu-
sion comes higher up the list of needs than campaigning for a good fuck (Dis-
abled Sexuality 160). Shakespeares comments were part of a keynote address
he delivered in 2000 at a San Francisco State University conference, Disability,
Sexuality, and Culture. In this talk, Shakespeare reflected on the low profile of
sex in the British disability movement, and in the developing field of disability
studies, which had struck him, Kath Gillespie-Sells, and Dominic Davies when
they wrote The Sexual Politics of Disability in the mid-1990s (Disabled Sexu-
ality 159).
Interestingly, in Shakespeares own work, the importance of sex seems to be
on the decline. In Disability Rights and Wrongs, which was published in 2006,
ten years after The Sexual Politics of Disability, Shakespeare reevaluates the earlier
book: by making sexuality our primary concern, we failed to understand that
intimacy is perhaps a greater priority for disabled people; indeed, sex may
be comparatively unimportant to a wide section of the population (168). This
section of Shakespeares argument appears to have been adapted in part from
his keynote address in 2000, where he likewise states that perhaps because we
havent had access to [sex], weve been in danger of overstating its importance
(Disabled Sexuality 165).
Shakespeare describes himself as more than a little queer, and his talk was
subsequently published in Bent, an online journal for gay disabled men. And yet
theres a way in which queerness gets disciplined when he says: We know about
Introduction 29
the fascination with gay male culture, which is particularly a fascination about
the availability of sex . . . The modern media, the modern fairy tale, is about the
possibility of sexual adventure in every public place (Disabled Sexuality 165).
We continue to believe in certain fairy tales, and we argue that Shakespeare
misses much in his easy dismissal of gay male sexual subcultures. We make
two key points about this dismissal, each of which has important ramifications
for disability subcultures (which, of course, already overlap, and should over-
lap more, with gay male subcultures). First, even if the modern media remains
fascinated with gay male cultures, for the past two decades neoliberal economic
and cultural forces have worked to contain, dilute, and privatize those cultures.
This fascination must therefore be understood as fascination of a very par-
ticular kind; neoliberal capital is fascinated in general with the ways that sub-
groups might be made more profitable and less dangerous or disruptive. Indeed,
as Samuel R. Delany and numerous other observers have noted, the gay male
sexual subcultures forged over the past half century were about increasing ac-
cess to public space. Consequently, as that access has been sharply circumscribed
through development and privatization, fewer bodies (including the potential
crip outlaws toward which we gestured above) have been able to find each other
out in public.
Second, Shakespeares distancing from these sexual subcultures sits uncom-
fortably close to a similar, and widely remarked, distancing in the gay and les-
bian movement, a distancing that has generated an emphatic privileging of sani-
tized identities: the stable pair and others whom Butler imagines as about to
be legitimized. This second point also has implications for disability studies; it
should prompt us to think carefully about how an impetus toward legitimacy
might function for disability theorists and activists. Like the mainstream gay and
lesbian movement, and in contrast to queer theorys impetus toward illegitimacy,
many important disability studies texts seem at times to be engaged in the work
of establishing the legitimacy, or potential legitimacy, of disabled subjects
in particular, sometimes, as members of the workforce or participants in the
marketplace.8 Garland-Thomson, for instance, cites approvingly (but contradic-
torily) an advertisement that markets itself to a disabled, upscale audience who
are after the look of affluent authority and charm as exemplifying a rhetoric of
equality (Seeing 368; emphasis added). Paul Longmore, similarly, famously
critiques capitalismin particular, telethons, as examples of what he calls con-
spicuous contribution (Conspicuous 134)but also insists, in the conclusion
to Why I Burned My Book: We, like all Americans, have talents to use, work to

do, our contributions to make to our communities and country. We want the
chance to work and marry without jeopardizing our lives. We want access to
opportunity. We want access to work. We want access to the American Dream
(258).
In pointing to these passages that are at times at odds with other parts of a
given writers own work, we do not want to suggest that disability studies as a
whole is uninterested in class analysis or uncritical of capitalism. On the contrary,
numerous writers in the field (including Longmore and Garland-Thomson) have
levied sharp critiques of capitalism, as well as more subtle analyses of the exploit-
ative workings of liberalism and neoliberalism.9 Nonetheless, disability studies
often emphasizes the project of securing places for disabled people within what
Deborah A. Stone calls the work-based system (21), rather than challenging
the structure of that system itself. In these accounts, the story of disability lib-
eration is narrated, or projected forward, as a transition toward what Garland-
Thomson calls an accommodation model of interpreting disability, as opposed
to the earlier compensation model (Extraordinary Bodies 18). Although it is easy
to read a movement away from social welfare and toward workplace access as
a form of progress, the construction of this particular narrative risks rendering
less than legitimate the needs of disabled people who cannot work, regardless
of what accommodations might be providedpeople, for example, with pain or
illness that is exacerbated by exertion.
In the United States today, most people whose disabilities prevent them from
working depend upon either Supplemental Security Insurance (SSi) or Social
Security Disability Insurance (SSdi). SSdi recipients often live near the poverty
line; their income is typically less than half of what it was when they were work-
ing. Those whose employment histories do not qualify them for SSdi receive SSi,
a program that in 2010 pays a California recipient a monthly benefit of $845; in
Mississippi, the amount is just over $600. Longmore observes that nonstigma-
tizing and adequate welfare was among the demands of many disability activists
throughout the twentieth century (Burned 79). Yet most contemporary disability
scholarship, while frequently discussing inaccessible workplace environments
and other barriers to employment, does not place a high priority on arguments
for increasing the amount of disability benefits or access to them.
Emphasizing disabled peoples employability and sexual normativity rhetori-
cally confers upon disability the status of what Butler calls the not yet legiti-
mate, as opposed to the never will be, never was. And although disability
studies can by no means be said monolithically to endorse this project of legiti-
Introduction 31
mization, there is at present no analogue within the field to what might be called
the legitimacy debate between queer theory and the mainstream lesbian and
gay movement. This debate has at times centered on marriage: advocates for the
stable pair who would marry if only they could versus those who say fuck mar-
riage and what Halberstam calls reproductive temporality (Queer Time 4). In
disability studies, if a comparable debate were to emerge, it might center on the
question of work, which is of course not unrelated to marriage, whether in the
cultural imaginationsex, talk show hosts and psychologists tell us, may be fun,
but marriage is hard workor in the economic structures of neoliberal capital-
ism, which uses marriage as a way of privatizing benefits associated with work. In
response to the image of the employable disabled person who would work if only
reasonable accommodations were granted, others might protest, Fuck employ-
ability: Im too sick to work; and how am I supposed to live on $845 a month?
The chapters in Sex and Disability, although they do not directly address the
above question, mightinsofar as they attend to the many ways that sex, as it
converges with disability, does and does not workbe described as queering dis-
ability studies. Pregnant men, compulsive masturbators, solicitors of public sex
in exchange for cash, gender benders, boys who like cunnilingus, and girls who
like to be on top are among the more obviously delegitimizing figures who ap-
pear in this volume. In perhaps less readily apparent but equally important ways,
chapters that analyze conjunctions of sex and disability as sites of violence (such
as white-on-black lynching or coerced sterilization) or exclusion (the fear and
disgust directed at men with cerebral palsy, female amputees, or women whose
bodies are more Z-shaped than S-curved) are, in their resistance to this vio-
lence and exclusion, engaged in imagining disability in ways that exceed or vio-
late norms of propriety and respectability. In ways, that is, that are queer.
Attending to sex and its mergings with disability, this volume engages in the
workand playof imagining how such joinings might reshape cultural under-
standings of sex and disability. Disability, the chapters in this collection show,
has the potential to transform sex, creating confusions about what and who is
sexy and sexualizable, what counts as sex, what desire is. Conversely, we hope
sex might transform and confuse disability, as it is understood in the dominant
culture, in disability studies, and in the disability rights movement. We hope
not only that you find pleasure in the contacts with sexual Access, Histories,
Spaces, Lives, and Desires on the pages that follow, but also that as you
readand, we hope, rereadthese chapters, they leave you still wanting more:
new positions, further explorations, more demands.

noteS
1. Our thanks to Anne Finger for allowing us to quote this personal e-mail of
7 December 2009.
2. Barbara Faye Waxman-Fiduccia, similarly, argued in 1999 that disabled people,
and disabled women in particular, are a sexual minority. Along with gay men, lesbians,
bisexuals, transgendered people, fetishists, children and old people, all of these sub-
groups are considered to exist outside the boundaries of reproduction. Their sexuality
is then not only considered to be purposeless, but dangerous, immoral, and perverse
(Sexual 280).
3. Arguably, the AdA Amendments Act of 2008 itself poses some of these difficult
questions about the minority group model. Recognizing that courts had very narrowly
interpreted who counts as having a disability, the actwhile indeed underscoring
that the category should have been understood more expansivelyattempts to shift
courts focus away from technical questions of who does or does not fit and toward the
question of whether discrimination has occurred.
4. Ron Amundson calls paradigm cases of disability those that involve a blind
man or a paraplegic woman (114); Anita Silvers calls paraplegia, blindness, deafness,
and others paradigmatic disabilities (77). Around the question of a model or para-
digmatic person with a disability, we find our ideas in generative tension with recent
work by Tobin Siebers. Certainly, we are persuaded by Sieberss call for disability studies
to find ways to represent pain and to resist models of the body that blunt the politi-
cal effectiveness of these representations (Disability Theory 61). Yet it seems to us that
Siebers overlooks the ways in which some versions of the disability identity politics he
celebrates (he calls identity politics a political boon for disabled people [Disability
Theory 95]) are themselves engaged in constructing models of the body that blunt the
political effectiveness of representations of pain. Sieberss Disability Theory argues that
critics are against identity politics for one of two reasons: they either believe (on the
Right) that proponents of identity politics are narcissistic or (on the Left) that they
are invested in a politics of victimhood. Our observation that some versions of dis-
ability identity politics structurally require deemphasizing pain suggests that critiques
of identity politics on the Left are more varied and nuanced than Siebers allows. For
critiques of the tendency of the social model of disability to exclude representations
of suffering or pain, see Wendell, Unhealthy; and Crow.
5. Rosemarie Garland-Thomson recognized more than a decade ago the value of
Sedgwicks universalizing/minoritizing distinction for disability studies (Extraor-
dinary 22). Garland-Thomsons use of Sedgwick, Erving Goffman, Michel Foucault,
Mary Douglas, and other theorists in the opening chapters of Extraordinary Bodies is
explicitly offered to readers as an invitation to further theorizing; hence, we are here
expanding upon and reworking Garland-Thomsons application of Sedgwicks rubric.
6. Over the past decade, a few high-profile controversies over runners have con-
Introduction 33
firmed both that there is a cultural expectation that the running body serve as a legible
sign of a particularly narrow able-bodiedness and that disruption of that cultural ex-
pectation is particularly anxiety producing. The South African double amputee Oscar
Pistorius, for instance, was initially deemed ineligible to compete in the Summer Olym-
pics of 2008 in Beijing because of his difference from other runners; claims were made
that his prosthetic legs gave him an unfair advantage over other runners. The decision
to exclude Pistorius was eventually overturned, although he then failed to qualify for
the South African Olympic team (he took home gold medals from the Paralympic
Games of 2008, also held in Beijing).
7. This is true even of some writing about mental illness in disability studies. For
example, Catherine Prendergast argues in The Unexceptional Schizophrenic that
the words of self-identified schizophrenics are often not rhetorically exceptional
in any of the ways postmodern theorists might expect (293). This view contrasts with
Margaret Prices argument, in an important article on psychosocial disability and
counter-diagnosis, that mental illness is often creatively disruptive of hegemonic
forms of identity and identification (11). For a discussion of the relationship between
the Mad Pride movement and disability studies, see Lewis. See also Ingram; Laden and
Schwartz; Wilson and Beresford.
8. For an example of an exception to this trend, see Taylor.
9. In addition to his foundational work on telethons, see Longmores writing about
the radical labor activist Randoph Bourne and his class-based analysis of the 1930s
organization the League of the Physically Handicapped (Burned 32101); see also
Garland-Thomsons discussion of the ways that Herman Melvilles character Bartleby
the Scrivener opts out of the emergent capitalist order (Cultural Logic).

I
aCCeSS
1
tobin siebeRs
a Sexual Culture for diSabled PeoPle
Sexuality is not a right which must be earned or a possession that must be purchased,
but a state of being accessible to all individuals. Even those who sometimes have to
fight for that access. Lucy Grealy, In the Realm of the Senses
The emergence in recent decades of people who define their identities based
on sexual preferences and practices is transforming the landscape of minority
politics. Sexual minorities are fighting for the rights and privileges accorded to
majority populations on many legal and political fronts. The fight over gay mar-
riage is only the most public and contentious of current struggles for full and
equal rights by a sexual minority. Proponents of minority sexual identity attack
the neat division between the private and public spheres, the relevance of the tra-
ditional family and its institutions of marriage and child rearing, and the moral
certainty that sexuality is better controlled or repressed than set free. Claims that
sexuality is a major part of a persons identity, that sexual liberation is a good
in itself, and that sexual expression is a civil right crucial to human happiness
have led to new conceptions of civic life linked to sex. Jeffrey Weeks argues that
attention to sexual identity gives birth to the sexual citizen. For him, sexual
citizenship remedies limitations of earlier notions of citizenship (39), focuses
attention on sexualized identities (38), and blunts forces that inhibit the free,
consensual development of human relationships in a democratic polity com-
mitted to full and equal citizenship (38). Kenneth Plummer also represents the
new sexual identities as a form of citizenship, defining intimate citizenship as
the control (or not) over ones body, feelings, relationships: access (or not) to rep-
resentations, relationships, public spaces, etc; and socially grounded choices (or
not) about identities, gender experiences (14). Finally, Abby Wilkerson notes
that oppressed groups tend to share the experience of sexual repression, explain-
ing that sexual agency is central to political agency and that sexual democracy
should be recognized as a key political struggle (Disability 35).1
The emphasis on control over ones body, access to public spaces, and politi-
cal agency will sound familiar to disability rights activists. Disabled people have
long struggled to take control of their bodies from medical authorities and to
gain access to built environments and public institutions. Like the sexual minori-
ties described by Weeks, Plummer, and Wilkerson, disabled people experience
sexual repression, possess little or no sexual autonomy, and tolerate institutional
and legal restrictions on their intimate conduct. Moreover, legal and institutional
forces inhibit their ability to express their sexuality freely and to develop consen-
sual relationships with sexual partners.
It would be an exaggeration to define the oppression of disabled people ex-
clusively in the sexual context; not many people with disabilities consider them-
selves a sexual minority. Nevertheless, I want to argue that disabled people do
constitute a significant sexual minority and that recognizing their status as sexual
citizens will advance the cause of other sexually oppressed groups. Sexuality is
often, Anne Finger explains about people with disabilities, the source of our
deepest oppression; it is also often the source of our deepest pain. Its easier for
us to talk aboutand formulate strategies for changingdiscrimination in em-
ployment, education, and housing than to talk about our exclusion from sexu-
ality and reproduction (9). The facets of my argument are multiple, but most of
them rely on the power of disability as a critical concept to defamiliarize how we
think currently about sex. First, thinking about disabled sexuality broadens the
definition of sexual behavior. Second, the sexual experiences of disabled people
expose with great clarity both the fragile separation between the private and pub-
lic spheres, as well as the role played by this separation in the history of regulating
sex. Third, co-thinking sex and disability reveals unacknowledged assumptions
about the ability to have sex and how the ideology of ability determines the value
38 Tobin Siebers
of some sexual practices and ideas over others. Finally, the sexual history of dis-
abled people makes it possible to theorize patterns of sexual abuse and victim-
ization faced by other sexual minorities.
My argument will hinge on what I call the sexual culture of people with dis-
abilities. This phrase is meant to set in motion a process of defamiliarization di-
rected at experiences so intimate and unspoken, so familiar and yet mysterious,
that few people will discuss them. These experiences are bundled under what is
colloquially called a sex lifea term I contrast heuristically to sexual culture.
Sexual culture refers to neither gender assignation nor sexual preference, al-
though obviously they are components of sexual being. Sexual culture references
the experience of sex itself. By sexual culture, I mean to suggest two ideas about
how disabled sexuality disrupts the notion of a sex life: first, sexuality assumes a
larger role in the quotidian life of people with disabilities than the usual phrase
sex life indicates; second, the idea of a sex life is ableist. Being able-bodied as-
sumes the capacity to partition off sexuality as if it were a sector of private life:
that an individual has sex or a sex life implies a form of private ownership based
on the assumption that sexual activity occupies a particular and limited part of
life determined by the measure of ability, control, or assertiveness exercised by
that individual. People with disabilities do not always have this kind of sex life.
On the one hand, the stigma of disability may interfere with having sex. On the
other hand, the sexual activities of disabled people do not necessarily follow nor-
mative assumptions about what a sex life is. Neither fact means that people with
disabilities do not exist as sexual beings. One of the chief stereotypes oppressing
disabled people is the myth that they do not experience sexual feelings or that
they do not have or want to have sexin short, that they do not have a sexual
culture.
Two cautions must be remarked before I undertake an extended argument
about the sexual culture of disabled people. First, the distinction between sex
life and sexual culture does not turn exclusively on the issue of privacy. While
disabled people sometimes lack privacy for sex, their situation is not unique.
Gay, lesbian, bisexual, queer, and transgendered people also suffer from a lack
of sexual privacy, and economic resources may determine whether people have
sex in private or public. Crowded housing situations, for example, are as offen-
sive to the conception of private sexual expression as health care facilities. The
distinction between sex life and sexual culture relies not on privacy but on ac-
cess as defined in a disability context: sexual culture increases access for disabled
people not only by breaking down the barriers restricting them from sexual loca-
Sexual Culture for Disabled People 39

tions but also by bringing sexual rights to where they live. Second, the idea of
sexual culture strips away what one might call the existential connotations of
a sex life. Existentialism posits that identities are constructed by ourselves for
ourselves, that all values are subjective, that we are responsible for our choices,
and that we are condemned to be free. The notion of sexual culture relies on dif-
ferent presuppositions about identity. I define sexual identities as theory-laden
constructions, combining both objective and subjective values, used by individu-
als to make choices, to test the consequences of their actions, and to explore the
possibilities and responsibilities of their sexuality. Sexual culture is designed as
a concept to provide a deeper, more sustained idea of how sex and identity inter-
connect by resisting the partitioning and privatization characteristic of a sex life.
It means to liberate sex, allowing it to overflow the boundaries of secured places
and to open up greater sexual access for people with disabilities.
no walkS on tHe beaCH
I am looking for an intelligent, literate woman for companionship and, perhaps,

sexual play. I am, as you see, completely paralyzed, so there will be no walks on the
beach. Personal ad
Sex always happens somewhere. We go to certain places to fall in love or to

have sex. A sex life, perhaps to our disappointment, tends to occur in the same
placesthe bedroom, hotels, automobiles, health clubs, baths, and so on. Sex
will not happen if we do not have access to such places or if we cannot return to
them once we discover that they permit sexual activity. If sex is walking together
on the beach, if it is running across a field of flowers to meet in an embrace, what
is the nature of sex apart from the ability to walk or to run? If a persons wheel-
chair gets stuck in the sand or if low vision makes it uncomfortable to dash across
a field, does it mean that this person will have little chance of having sex? Clearly,
people who do not do these things or go to these places manage to have sex, but
that is not exactly the point. The point is to ask how the ideology of ability deter-
mines how we think about sex.
The ideology of ability represents the able body as the baseline of humanness.
Absence of ability or lesser ability, according to this ideology, marks a person
as less than human. The preference for ability permeates nearly every value in
human culture, including the ability to have sex. In fact, sex may be the privileged
domain of ability. Sex is the action by which most people believe that ability is
40 Tobin Siebers
reproduced, by which humanity supposedly asserts its future, and ability remains
the category by which sexual reproduction as such is evaluated. As a result, sex
and human ability are both ideologically and inextricably linked. Mark OBrien
recounts a story about the belief that the inability to have sex robs the disabled
person of human status:
We watched a movie about disability and sexuality. The movie consisted

of four or five able-bodied men joking and laughing about how they once
lugged their crippled friend up a flight of stairs to a whorehouse. . . . After
the movie, a doctor talked about disability and sexuality. . . . I will always
remember his closing line: You may think youll never have sex again,
but remember . . . some people do become people again. (OBrien and
Kendall 80)
The doctor is speaking loosely about sex and membership in the human com-
munity, but he employs a widespread prejudice used against those who have lost
human status along with the ability to have sex. What is it about sex that be-
stows human status? Barbara Waxman-Fiduccia argues that disability assumes
the characteristic of a sexual perversion because disabled people are thought un-
able to produce quality offspring (Current 16869). It is reproduction, then,
that marks sexuality as a privileged index of human ability. In fact, the ideol-
ogy of ability underlies the imperative to reproduce at many levels, establishing
whether an individual supposedly represents a quality human being. First, sex
appeal determines the opportunity to have sex. The greater a persons capacity
to attract partners, the more opportunities to have sex. Second, a person must
be able physically and mentally to have sex. Third, a person must be able to re-
produce, to be either virile or fertile. To fail to be able to reproduce is somehow
to fail as a human being. Finally, successful reproduction is thought to pass our
essential abilities and qualities to our children. The predominant assumption is
that what we are will be visited upon our children. If a person does not measure
up to societys ideas about ability, that persons opportunities to have sex will be
limited. People with disabilities share with gay men and lesbians the suspicion
by majority populations that they cannot, will not, or should not contribute to
the future of the human race. They will not reproduce, but if they do, the expec-
tation is that the results will be tainted. Social stigma would have little impact
on sexual behavior if it were not for the fact that ability represents the supreme
measure of human choices, actions, thoughts, and values.
The concept of a sex life encapsulates many of the ways in which the ideology

of ability distorts current attitudes about sexuality. At the most superficial level,
a sex life is described almost always in the context of health. A sex life must be,
first and foremost, a healthy sex life, and the more healthy a person is, the better
the sex life is supposed to be. Whence the imperative in todays culture to work
on ones sex life, to improve or better it, to do special exercises or adopt a
particular diet for it, to spice it upall for the purpose of discovering the ulti-
mate pleasure. These and other catchphrases attend the commodification of sex
as healthy and satisfying, but the connection between a sex life and ability runs
deeper than clich. When disability is linked to sex, it becomes a clinical mat-
ter in which each disability betrays a particular limitation of sexual opportunity,
growth, or feeling. The literature on sex and disability recites a litany of limita-
tions for each category of impairment. The blind have trouble with sex because it
centers supposedly on a visualization of the body as integral whole, and lacking
sight, they cannot visualize what a body is (Hamilton 239). The mobility impaired
and paralyzed are apparently cut off from sources of information about sex from
peers, and their sexual development remains stunted (Shuttleworth, Search
26566). Because of language delays, deaf people are believed to be emotion-
ally and sexually immature, living without the language tools needed to meet
the high standards of communication required for sex (Job 264, 266). Disabled
women are said to tolerate sexism and objectification (Fine and Asch 2930). In
general, people with disabilities are thought to suffer from distorted body images,
considering themselves ugly, and they do not feel at home with typical gender
roles.
Because a sex life depends on ability, any departure from sexual norms reads
as a disability, disease, or defect. Moreover, the equation runs in the other di-
rection as well: disability signifies sexual limitation, regardless of whether the
physical and mental features of a given impairment affect the ability to have sex.
Eugenics and the Human Genome Project design futures for humanity on the
basis of the desire to eliminate transmissible traits linked to disability, but the fear
of disability also stymies intimate romantic relations, even when reproduction is
not an expectation in the relationship. Many people in the disability community
are still waiting, as Corbett Joan OToole explains, to hear a story in which a man
or woman who chooses to be lovers with a disabled person is congratulated by
family and friends for making a good choice (217). What sea change in current
scientific, medical, political, and romantic attitudes would be necessary to rep-
resent disabled sexuality as a positive contribution to the future? To reconceive
42 Tobin Siebers
sexuality apart from ability, it would be necessary to imagine the sexual benefit
of a given impairment, to claim and celebrate it as a sexual advantage.
Private PartS in PubliC PlaCeS
I was very shy before my accident. Dealing with lots of nurses doing extremely
personal things to yousometimes in front of other peopleknocks off your
shyness. A quadriplegic
If people with disabilities are to develop a sexual culture, they will need to access
safe spaces where they may develop new erotic theories and modes of being. A
major obstacle to this project is the separation between the private and public
spheres and the history of this separation in regulating sexuality in general and
disabled sexuality in particular. Feminists identify the private/public split as a
source of gender and sexual oppression because it often reifies gender differences
and disempowers women. First, men have more power than women to draw the
lines between private and public life. Second, men often use this power to main-
tain or to increase their advantage over women, forcing them into dependency,
using privacy to conceal sexual violence, and stifling any attempts by them at
political protest. Because the state is reluctant to enter the private sphere, women
are imprisoned there, made vulnerable to abuse by domestic partners and given
the status of second-class citizens.
Disability studies supports the feminist argument that the private/public split
is responsible for political oppression, while deepening the perception that pri-
vacy is abandoned at a terrible cost. The experience of disabled people with the
medical model has been key to this perception. The medical model thrives by
sustaining an essential difference between nondisabled and disabled people, de-
fining disability not as a flourishing of biological diversity but as an individual
defect that medical professionals cure or eradicate in order to restore a person
to the superior state of health required by the ideology of ability. For twenty-
first-century medicine, then, it matters only a little whether you are a man or a
woman when a surgeon reaches into your body and puts a hand on an internal
organ. Nor does it matter a great deal whether the doctor is male or female. The
organ will be removed if the doctor thinks it should, whether the procedure has
been discussed or not. Male and female doctors alike have experimented on me,
and I never knew that experimentation was happening until later, sometimes

years later. Rare is the doctor who explains procedures, let alone allows patients
to question them. There seems to be no protected realm, no private sphere, into
which the medical establishment cannot reach.
If an urgent task is to protect privacy, while attacking its use in the oppres-
sion of women, minorities, and people with disabilities, there is no better place
to begin than with the medicalization of the private sphere and, in particular,
the impact of medicalization on economic class. Money buys privacy, and many
practices, legal and other, follow the money. Clubs using private money need
not obey antidiscrimination laws. Customers who pay more win the right to
have their own private spaces carved out of the public domain. For example,
first-class and business-class passengers on airlines routinely have bathrooms
reserved only for their use, into which coach passengers may not go. Property
rights based on economic advantage also determine privacy laws. Indeed, laws
against trespassing are a primary support to the right to privacy. The spaces that
one owns or rents define the places where private things are permitted; if one
tries to do private things in publicthat is, commonly owned placespolice
intervention and arrest are more likely to occur. Private dwellings are protected
against forced entry and search, unless there is a warrant, while people who live
on the street are almost always vulnerable to search and seizure. Public rest-
rooms, rest stops, and community parks have enforced vagrancy and decency
laws designed to control economically disadvantaged people and other popula-
tions thought marginal. Without the money to buy privacy, there is little protec-
tion against public exposure and its invasive extensions.
Yet the presence of disability exposes the fragility of the traditional separation
between private and public because economic factors do not obtain for disabled
people in expected ways. Medicalization opens privacy to assault, and while eco-
nomic privilege may make this assault less intrusive, it does not eliminate it. A
private room in a hospital, no matter how expensive, is not like a hotel room,
although it is leased for a certain period. No Do Not Disturb sign, controlled by
a patient, will ever hang on the doorknob. Doctors, nurses, aides, and janitorial
staff enter and exit at will. Despite the persistent fantasy that doctors, nurses, and
nurse assistants provide sexual services, hospital trysts and erotic sponge baths
are not part of their job descriptions. In fact, their professionalization hinges on
being able to invade privacy while divorcing that invasion from its sexual asso-
ciations. It may be acceptable, Dominic Davies explains, for a male patient to get
an erection when having his penis washed, but consensual, vigorous washing
is seen as forbidden (18384). As long as medical staff act professionally, they
44 Tobin Siebers
do not consider themselves responsible for sexual side effects, and yet they cross
erotic boundaries constantly, with little real regard for the consequences of their
actions. Patients in medical institutions do not possess the same rights as non-
disabled staff. It is as if sick or disabled individuals surrender the right to privacy
in exchange for medical care, even though caregivers work for them. The dif-
ference between those of us who need attendants and those who dont, Cheryl
Marie Wade claims, is the difference between those who know privacy and those
who dont (88).
Group homes and long-term care facilities purposefully destroy opportuni-
ties for disabled people to find sexual partners or to express their sexuality. Even
though inhabitants in group homes pay rent for their rooms, the money buys no
functional privacy or right to use personal space. The staff usually does not allow
renters to be alone in their room with anyone of sexual interest. Renters are sub-
jected to intense surveillance, their activities entered in the day log. In many care
facilities, staff will not allow two people to sit together alone in the same room.
Some facilities segregate men and women. Add to these restrictions the fact that
many people with disabilities are involuntarily confined in institutions, with no
hope of escape, and the enormity of their oppression becomes palpable. The inti-
mate lives of disabled men and women, as OToole phrases it, are monitored,
documented and discussed by others (220). Medical authorities make decisions
about access to erotic literature, masturbation, and sexual partners.
The unequal power relations between staff and patients encourage sexual
abuse. We are only beginning to gather data on the sexual abuse of people with
disabilities, but initial statistics indicate that the incidence of abuse is high (Ward
1349), perhaps two to ten times more than the experience of the nondisabled
population (Kaufman et al. 8; Shakespeare, Sexual Politics 63). It is puzzling
that paralyzed women are especially vulnerable, given that disabled women are
not considered sexually attractive by mainstream society, until a closer look is
given to the conditions of abuse. A woman unable to leave her bed is a woman
always in bed, and conventionally a bed is a sexual site. Paralysis is also pic-
tured easily as sexual passivity or receptivenessan invitation to sexual preda-
tors, since the erotic imagination thrives on clichd positions and gestures. No
wonder paralyzed women who cannot get out of bed worry about imagining
themselves as rape victims, even when engaging in consensual sex (Westgren
and Levi 311, 314).2
Not surprisingly, the depersonalizing effects of medicalization often wound
the psyches of disabled people, inducing feelings of worthlessness and sexual

shame. OBrien recounts how nurses made jokes in front of him about his invol-
untary erections, saying things like Looks like someones having a good time
(OBrien and Kendall 45). On numerous occasions, therapists engaged in sexual
banter and teasing about intimate parts of his body (7073). Medical staff place
patients on bedpans in public, sometimes forgetting about them for long peri-
ods of time (OBrien and Kendall 23; Johnson, Disability Gulag 60). Frequently,
the abuse is premeditated, representing acts of discipline, payback, or sexual
harassment. OToole reports that many disabled women experience unaccept-
able touching by male doctors during medical examinations; they are sometimes
publicly stripped and displayed to medical students. These women recount feel-
ings of fear, embarrassment, vulnerability, and shame; they often try to separate
themselves from their bodies, pretending that nothing is happening to them
(21819).
Personal choice and autonomy are constitutive features of the private
sphere, but once subjected to medicalization, individual preference and self-
determination evaporate. When the right to privacy and the medical model come
into conflict, a new public sphere, controlled by medical figures and supportive
of their authority, appears on the horizon. This medical zone of publicness re-
places for people with disabilities everything formerly considered private. It en-
gulfs them in an invasive and discriminatory space where they are viewed exclu-
sively as medical subjects and the most casual stranger feels empowered to touch
them, to comment on their disabilities, and to offer medical advice or charity.
The medical model too often makes of the world a hospital where the disabled
are obliged to be perpetual patients and the nondisabled have the right to play
doctor.
tHe erotiCS of diSability
Because I am so sensitive to touch, so acutely aware of a breeze on my neck, a ring

on my finger, the rib of a sock pressing into my ankle, when I choose to participate
in sexual contact, my unusually heightened physicality works for and not against me.
Amy Wilensky, The Skin Im In
As a sexual minority, people with disabilities face many limitations on their inti-
mate behavior and erotic feelings. But, aware of their oppression and defiant
of its injustice, they have begun to explore an alternative sexual culture based
on the artfulness of disability. The progress has been slow because the fight for
46 Tobin Siebers
access has usually targeted the public sphere. For people with disabilities, the
fight to end discrimination in education, employment and other areas of life,
Tom Shakespeare explains, was all about making personal troubles into pub-
lic issues. But the private lives of disabled women and men were not seen as
being equally worthy of concern (Disabled Sexuality 15960). Furthermore,
the social construction model favored by critics of the built environment tends
to neglect physical aspects of disability related to sexuality (Shakespeare, Dis-
abled Sexuality 162). Consequently, we know much more about the public di-
mension of disability than about its private dimension; we are at the beginning of
a period of sexual investigation for disabled people, where information is scarce
and ethnography and sharing of practices need to be pursued.
Nevertheless, there are signs that people with disabilities are claiming a sexual
culture based on different conceptions of the erotic body, new sexual temporali-
ties, and a variety of gender and sexed identities. These emerging sexual identities
have at least two significant characteristics. First, they represent disability not as a
defect that needs to be overcome to have sex but as a complex embodiment that
enhances sexual activities and pleasure. Second, they give to sexuality a political
dimension that redefines people with disabilities as sexual citizens. It is crucial
to understand that sexual citizenship does not translate merely into being able to
express sexuality in publica charge always levied against sexual minorities
but into the right to break free of the unequal treatment of minority sexualities
and to create new modes of access for sex. In the case of disabled people, sexual
citizenship has particular stakes. Some specific agenda items include access to in-
formation about sexuality; freedom of association in institutions and care facili-
ties; demedicalization of disabled sexuality; addressing sexual needs and desires
as part of health care; reprofessionalization of caregivers to recognize, not deny,
sexuality; and privacy on demand.
While certain aspects of the body are not open to transformation, sexual
desire and erotic sensation are remarkably flexible. For example, people with
paralysis, who have lost feeling in traditional erogenous zones, have found ways
to eroticize other parts of their body. They also develop new ways to please their
partners by creating erotic environments adjustable to differently abled bodies.
As feminists have made clear, normative sexuality requires a distinctive mapping
of the body into limited erogenous zones (Irigaray). A parallel geography exists
between the places on the body marked for sex and the places where bodies have
sex. Although it is considered kinky to have sex in out of the way places, it does
not usually cross ones mind to summon sexual feelings in places on the body

not already demarcated by them. Andrew Vahldieck adds a particularly vivid
and thoughtful account to the literature on sex after spinal cord injury about the
erotics of the disabled body:
Theres a bumper sticker that proclaims, Quads Make Better Lovers and
perhaps its true. One positive by-product of adapting to a disability is
having to learn to go with the flow of experience, both mentally and physi-
cally. After severe spinal injury, one must begin again, and this includes
developing alternate sense faculties. My erotic self need not be solely local-
ized at the tip of my cock, where Ive lost much sensation; I have learned
that other areas of my body can be erotically sensitive and responsive. Sen-
sation is mobile. My passion, desire and heat can be creatively restrained
or refocused on more sensitive areas: ears, lips, neck, shoulders. In doing
so, I can transfer sensual feeling into areas where sensation is diminished.
Just as important has been learning to free myself from a preoccupa-
tion with my own pleasure. To give myself over to my partner. To slow
down, not because Im disabled and have to, but because I want to. This
has proved crucial, paradoxically, to building up my own libidinous mo-
mentum. By relaxing into a quiet, tender space while stroking and touch-
ing my lover, I can engage vicariously in her enjoyment and stimulation
so intensely as to share in herand expand upon my ownfelt pleasure.
How curious that pleasing women orally has never been held as a form of
manly sexual expression. Speaking as a man labeled severely disabled,
this may truly be considered a high and most subtle erotic art.
Disabled sexuality not only changes the erotics of the body, Vahldieck implies,
but also transforms the temporality of lovemaking. For example, in the same way
that narrative temporality has a beginning, middle, and end, normative sexu-
ality requires beginning, middle, and end points. This is especially true of pene-
trative sex. Penetration has a preparatory phase, a period of sustainment, and a
climaxall designed to prop up the physiognomy of the penis. One gets it up,
gets it in, and keeps it up for as long as possible, until one loses it. Penetrative sex
figures as a race against fatiguea performance with a beginning, middle, and
end. It also smacks of the assembly or production line, where part after part is
added until the product is finished. The dependence of sex on penetration, inci-
dentally, represents one reason why people tend to partition their sex life from
everyday existence. Because the temporal phases of penetrative sex are so indel-
48 Tobin Siebers
ible, its narrative seems relatively autonomous, and it is easy to think of it as an
activity apart from all other facets of life.
Because disabled people sometimes require advanced planning to have sex,
their sexual activity tends to be embedded in thinking about the day, not parti-
tioned as a separate event. Among disabled people, the so-called sex act does not
always qualify as an action or performance possessing distinct phases such as be-
ginning, middle, and end. Moreover, the myth that sex must be spontaneous to
be authentic does not always make sense for people who live with little privacy
or whose sexual opportunities depend on making arrangements with personal
attendants. Rather, disabled sexuality has an ebb and flow that spreads it out
among other activities, and its physiognomy does not necessarily mimic conven-
tional responses of arousal, penetration, or orgasm. I used to get stuck, needing
orgasm, needing penetration, etc., one woman explains. Now, my sexuality has
matured. . . . For example, one of the greatest highs I get (full-body orgasms? or
spiritual-like orgasms?) is from having my neck bit (Kaufman et al. 126). Some
people without bodily sensation report experiencing mental orgasms when en-
gaged in kissing, verbal play, or sexual fantasy. Others remark that sexual plea-
sure grows more intense with the advent of disability, owing either to physical
changes or to a greater awareness of their body: Since I became paralyzed in
both legs I have noticed that I have varying kinds of orgasms, depending upon
the situation. For example, when I play with myself and rub my clit a certain way
my orgasms are much more intense. Sometimes my leg will go into spasm and
my crotch feels tingly (Kaufman et al. 52).
A crucial consideration for people with disabilities is not to judge their sexu-
ality by comparison to normative sexuality but to think expansively and ex-
perimentally about what defines sexual experience for them. Sex may have no
noticeable physical signs of arousal or may not conclude with an orgasm. When
touching is involved, the places being touched may not be recognizable to other
people as erogenous zones, which makes sex in public possible and a lot of fun.
Sex may extend beyond the limits of endurance for penetrative sex, resembling
slow dancing instead of the twist. It may seem kinky by comparison to what
other people are doing. According to OToole, disabled sex often surprises a
persons community, no matter how radical. For example, in Boston in the mid-
1990s, Connie Panzarino marched in a gay pride parade with a placard reading,
Trached dykes eat pussy all night without coming up for air (OToole 212). That
a woman with little movement below the neck could be the active partner in sex

and use her disability to enhance her partners pleasure stunned and shocked
people. This disabled woman, OToole notices, was using her disability as an
advertisement for a sexual partner. She was appealing to partners who like ex-
tended oral pleasure. She was turning her apparent severe disability into a dis-
tinct sexual advantage (22021). OToole also mentions an account given by a
lesbian amputee about enhancing the pleasure of her partners: Can I just say
that my two leg stumps make fabulous sex toys. I really think my amputated body
is tailor-made for lesbian sex: I can crawl on top of my lover and grind my leg into
her cunt in ways that I couldnt if I had real legs. Having my little stumps gives
me much more freedom of motion and I can get closer, deeper into her that way.
Plus, pushing myself into her and away from her and into her again, moving my
hips and legs against/on her body is the closest I have come to slow-dancing in
years and I love it (215).
Disabled people may advance a different sexual geography both for the body
and for the places where bodies express their sexuality. Just as disabled per-
sons may change places on the body not usually associated with sexual feeling
into erogenous zones, they reorganize places inhabited by bodies as locations
for sexual culture. Citizenship rights tend to be practiced in certain locations
polling places, town centers, courtrooms, and so forthand these locations are
not always accessible to people with disabilities. Sexual citizenship suffers from
the same restrictions, but here the goal is not necessarily to make the built en-
vironment more accessible, although it is an important goal, but to bring rights
to the places where disabled people want to have sex. Privacy on demand, for
example, could transform a hospital room into a safe space for sexual activity,
avoiding the difficulties described by this disabled person: Even though I am
often by myself, I never know when someone will walk in on me. I may look back
and think, Ive just had half an hour to myself, I could have masturbated, but
the time wasnt guaranteed. It isnt really my time (Kaufman et al. 114). Unfor-
tunately, we are still at a stage where there are more negative illustrations of how
rights of sexual citizenship fail than positive examples of how they might work.
Nevertheless, people intent on having sex find fugitive places to commingle: Ac-
cessible toilets are FAb. . . . One can get pushed in there by a lover and everyone
thinks, Isnt that sad, someone needs to wipe their bum, and you can shag away
in private and then come out and no one has a clue as to what really went on! Its
liberating and definitely one of the few perks of being a wheelchair user! (Kauf-
man et al. 13031). Embracing greater sexual diversity is key to the rights of dis-
abled people, and it might have unanticipated benefits for thinking about sex in
50 Tobin Siebers
general. As one woman explains it, if you are a sexually active disabled person,
and comfortable with the sexual side of your life, it is remarkable how dull and
unimaginative non-disabled peoples sex lives appear (Shakespeare, Disabled
Sexuality 163).
New formations of gender and sexed identity may be the final frontier of
sexual citizenship for people with disabilities. Although present currents on the
Left and Right wish to abolish identity entirely, especially identities connected
with sickness and perceived weakness, gender and sexed identities make sexu-
ality present as a mode of being not easily closeted away or partitioned into iso-
lated temporal and spatial segments. Claiming an identity based on sexual cul-
ture thrusts ones minority status into the foreground, politicizes it, and creates
the opportunity to clarify sexual needs and desires. It also resists the closeting of
gender and sexuality central to Western attitudes about sex. It may be especially
valuable for people with disabilities to assert sexed identities, since Western atti-
tudes seem married to the argument that sex is sick, giving people perceived
to be sick extra purchase in making counterarguments.
Apart from the urgency of political resistance, it may simply be the case that
different identity formations suit people with disabilities better. They often com-
plain that conventional notions of male and female or straight and gay do not
apply to them (Shakespeare, Disabled Sexuality 163), and it is fairly obvious
that their sexual practices depart from many of the founding myths of norma-
tive sexuality. Disabled people do not embody gender in natural ways because
gender stereotypes do not allow it. Its like I dont have any maleness, one dis-
abled man complains (Shuttleworth, Search 272). Certain disabilities appear to
offer specific gender limitations. Men with cerebral palsy cannot touch or hug
their female partners in the ways to which they are accustomed (Shuttleworth,
Search 269). Blindness changes sexual flirtation from afar between men. But
another person puts a positive spin on flexible gender identity: Why should men
be dominant? Why should sex revolve around penetration? Why should sex only
involve two people? Why cant disabled people be assisted to have sex by third
parties? (Shakespeare, Disabled Sexuality 163). OToole notes that no lesbian
equivalent of the missionary position exists, and that partners are not obliged
to have orgasms in the same position at the same time (213). Disabled sexuality
embraces a similar flexibility. The sexed identities of disabled people are of value
to all sexually active people, Shakespeare claims, because they allow for a con-
tinuum of sexual practices and encourage a greater willingness to embrace di-
versity, experimentation, and alternative sexual techniques (Sexual Politics 58).

ConCluSion
If we are to liberate disabled sexuality and give to disabled people a sexual culture
of their own, their status as sexual minority requires the protection of citizenship
rights similar to those being claimed by other sexual minorities. The challenge of
sexual citizenship for people with disabilities is great because they remain one of
the largest unrecognized minority populations, little awareness exists about the
manner of their oppression, sex is a taboo subject for everyone and for disabled
people in particular, and the unquestioned embrace in most societies of ability
as an ideology denies participation in the public sphere to those not deemed
quality human beings. Integral to sexual citizenship for people with disabilities
is the creation of a safe space with different lines of communication about dis-
abled sexuality; they need in effect to invent a new public sphere receptive to
political protest, public discussion, erotic association, and the sharing of ideas
about intimate practices and taboos, erotic techniques and restrictions, sexual
innovation and mythologies.
In the clash of the culture wars, some people have argued for a monoculture
where we abandon all identities except nationality, while other people argue for
a multiculture where we embrace many identitiesracial, ethnic, gendered, na-
tional, and sexed. The call for a disability culture in general and a sexual disability
culture in particular will arouse, no doubt, the anger of the first group and garner,
with luck, the support of the second. But the stakes in the emergence of a sexual
culture for disabled people are greater than the dispute between these two politi-
cal factions. The stakes concern questions about fundamental rights expected by
all citizens in a democratic society: freedom of association and intimate com-
panionship, authority over their own body, protection from violence, abuse, and
oppression, and the right to pursue a sexual future of their own choosing. Be-
cause every citizen will become sooner or later a disabled citizen, the struggle of
people with disabilities for sexual rights belongs to everyone.
noteS
This chapter was previously published as chapter 7, A Sexual Culture for Disabled
People, in Disability Theory, by Tobin Siebers (Ann Arbor: University of Michigan
Press, 2008), 13556.
1. A number of other discussions touching minimally on sexual citizenship are
worth noting. Sonia K. Katyal proposes the idea of sexual sovereignty to address
various battles on the fault line between culture, identity, and sexuality, claiming that
52 Tobin Siebers
the Supreme Court decision in Lawrence v. Texas serves as a starting point with which
to build a theoretical model for global sexual autonomy that encompasses many of the
anti-essentialist critiques offered by human rights discourse, critical race theory, and
queer theory (1435). Nevertheless, her theory of sexual sovereignty builds on ideas
of independence, personhood, autonomy, and impermeability (1461), without con-
sidering their relation to disabled people as a sexual minority. Lisa Duggan offers an
incisive analysis of the use of gay marriage and reproductive rights to advance the re-
configuration of American citizenship rights, arguing that the Right seizes on such cul-
tural issues to conceal its determination to stimulate upward redistribution rather than
downward redistribution of economic resources and power (Twilight). Finally, Eithne
Luibhid focuses on immigrant sexual minorities, noting that sexuality is an especially
dense intersection for power relations bearing on citizenship and noncitizenship.
2. In most cases, however, the womens worries turn out not to be true: Wherever
and whenever the first intercourse took place, all women recollected it as a positive ex-
perience: I was relieved that my rape-fantasies were wrong (Westgren and Levi 312).

2
Russell shuttlewoRth
bridging tHeory and exPerienCe

a critical-interpretive ethnography of
sexuality and disability
Research on sexuality and disability has historically taken little account of the
lived experiences of disabled people. In its formative years (roughly the 1950s
through the 1970s), this work focused primarily on sexual functioning, predomi-
nantly that of heterosexual men. Penile Erection Following Complete Spinal
Cord Injury in Man is a typical journal article title from the period (Chapelle
et al.). The 1980s through the mid-1990s saw the addition of important issues to
the research agenda, such as sexual abuse and the psychological measurement
of sexual self-esteem; and gradually women have been included as research par-
ticipants. A recent review of the research literature from 1997 through 2007 re-
veals that further diversification is occurring (Shuttleworth and Gore 12). Yet
researchers continue to resist tackling issues that raise ethical dilemmas, such as
facilitated sex; they neglect to include certain groups of disabled people in their
research, such as queers; and for the most part, they situate their work within a
functional paradigm of sex, although this paradigm has been expanded to in-
clude the psychosocial functioning of normative sexual relationships (Shuttle-
worth and Gore 12). Most significantly, disabled peoples senses of their sexu-
ality and of their everyday sexual interactions remain under-researched.
Resisting the prevalent objectifying approaches, a recent body of work by dis-
abled writers and artists and their allies prioritizes the diverse voices of disabled
people and foregrounds their own reflections on their sexuality. In interviews,
memoirs, and personal essays, disabled people have countered the limitations of
functional or medical interpretations of their sexuality, creating spaces in which
they can talk straightforwardly about sex in their lives. Disabled peoples claim-
ing of the authority to describe their own bodies and experiences has been foun-
dational to disability scholarship and activism; it has made possible disability
studies radical reconceptualization of disability as a form of social oppression
rather than of individual pathology. Yet many of these first-person accounts of
sexuality and disability lack theorization of the complex social, historical, cul-
tural, and political conditions under which the lived experiences they recount
take shape. Moreover, despite a growing recognition within academic discourses
that both sexuality and disability are socioculturally constructed categories of ex-
perience, few politicized scholarly analyses take both sexuality and disability as
their topics.
Theorization of sexuality and disability has been especially lacking in terms of
discussion of disabled peoples sexual access. Sexuality studies has not embraced
the sexual access concerns of marginalized groups as a scholarly issue; neither
has a recently emerging body of work in disability studies that is beginning to
theorize sexuality focused much on this problem.1 In the latter case, this might
seem fitting. After all, the notion of access has historically been tied to a rights-
based understanding of equality, pertaining to public spheres rather than private
ones. However, what I have in mind is an elaborated sense of access that theo-
rizes the effect that sociopolitical processes and structures and symbolic mean-
ings have on disabled peoples sense of desirability, sexual expression and well-
being, sexual experiences, and embodied sexual feelings, as well as the resistance
they often deploy against sexual restrictions (Shuttleworth, Disability 17880).
Much of the new work in disability studies on sexuality tends to focus upon rep-
resentations and discursive structures, rather than on disabled peoples interpre-
tations of experience and of the multiple barriers that can impede their sexual
expression. This new work is innovative and theoretically sophisticated; among
its important contributions is its attention to the social and discursive structures
that make experience articulable as such. Yet indispensable as is the insight that
lived experience is itself constructed, what often gets lost in poststructuralist
analyses of disability is any sense of disabled peoples everyday interpersonal
interactions or of their own interpretations of these encounters.
Bridging Theory and Experience 55

In this chapter, I argue for studies of sexuality and disability that take seri-
ously what disabled people themselves actually do and say. Elucidating a critical-
interpretive ethnographic approach, I discuss research that I conducted on the
sociosexual situation of men with cerebral palsy in the San Francisco Bay Area
in the mid- to late 1990s. I also demonstrate the importance of elaborating the
concept of access in analyses of disabled peoples sexual lives. The fourteen men
I interviewed, despite a diversity of ethnic, racial, and sexual identifications, had
in common a strong sense of encountering multiple, often intractable, barriers
to being perceived as sexual beings and to accessing sexual experiences. Critical-
interpretive ethnography, while grounding itself in participants understandings
of their lived experiences, also elucidates the cultural and sociopolitical contexts
that give shape and meaning to these experiences. In other words, it neither
naively accepts experience at face value nor eschews it in favor of theory.
Critical-interpretive ethnography thus brings together the strengths of method-
ologies that analyze social and discursive structures and those that attend closely
to personal experience. For this reason, it is uniquely suited to a study of sexu-
ality and disability, categories of experience that, although they are both highly
constructed, are also felt as deeply personal.
etHnograPHyS Collaborative fiCtionS
Lived experience cannot naively be considered a natural process or product.

Participants interpret their experience using cultural lenses forged within par-
ticular social and familial locations and personal circumstances. The task of the
ethnographer is to show the continuity and diversity of interpretations within a
community. Indeed, whether practiced by insider, ally, or more traditional out-
sider ethnographer, ethnography is a research process in which the ethnogra-
pher cultivates familiarity and intimacy with research participants in order to
observe their everyday interactions and to elicit a diversity of interpretations.
These interactions and accounts are progressively contextualized and conceptu-
alized by each participant and the researcher, first within their own terms and
then in terms of other participants accounts. What results is a mutual construc-
tion (as many social theorists and human science researchers have observed)
and in some sense a negotiated fiction.2 But as Kirsten Hastrup observes, Not
any fiction will do. . . . We . . . investigate the lived space, which is the experien-
tial counterpart of the implication of cultural space. . . . It will be understood
56 Russell Shuttleworth
that this is not solely an ideational space, but one which is made up of people
and actions (47).3
Consider the collaborative process of interpreting the following quote by
Dirk, who has dysarthric speech and uses a wheelchair for mobility; Dirk is one
of fourteen men with cerebral palsy whom I interviewed.4
diRk:I used to have trouble breathing. Like if I was laying down with someone,
I would get thesewell, my disability sort of manifests itself. If Im upset I
have trouble with my diaphragm, maybe its my throat, anyway, thats how I
lose control, I have trouble breathing. . . . It would feel terribly inappropri-
ate. I would feel scared, I would say to myself, why am I feeling scared when
I should be feeling anythingI should be feeling the opposite, well, I was
excited. I was scared maybe because I was excited. But I think I was scared
becauseIm not sure, I guess anticipation of something that I wanted very
much. My body, alwayswell, not always but often betrays me. I feel that
undermines me. The one thing that you dont need is less control; you need
more control. You dont want to beits not very attractive or romantic to
have a hard time breathing, to have a hard time laying still, its just not, and
also for me its very distracting. I mean, forget the other person, its me too. I
cantit ruins the mood. Like, my body is almost jealous in a funny way. If
my body were another personthis is a strange thing to say, but I think its a
jealous woman or a jealous other, not necessarily a woman but a jealous third
being. Theres me, and then theres the woman, and then theres my body.
Usually you and your body are in sync and in agreement with what youre
doing, but sometimes its almost as if my body is behaving as if it didnt want
me to do this. I think that what Im exhibiting are symptoms of fear.
RuSSell:About what?
diRk:Well, I dont know. Breathing hard, sweating, its as if Im terrified, but

Im not sure why, Im not sure what it is. If you looked at me, if you did some
kind of objective reading of me with some machine, somebody would say,
this persons scared. They wouldnt say, this persons sexually aroused. They
wouldnt say, I can tell hes in an intimate situation. This person is facing, not
a potential sex partner but a lion or a person who is going to assault him. I
dont necessarily have those emotions; Im not afraid emotionally, but my
body seems to be behaving like its afraid. But I dont really have access to
what the root of that fear is; I think its afraid like an animal is afraid. I dont

knowyou know when you first get an animal and it isnt tamed? You have
to be very gentle, and you cant always pet it; I need to be tamed very slowly. I
needed to be tamed and the animal, I dont know whatI guess its afraid of
being harmed, but of course it isnt aware of it. And my bodyIm not aware
of it, but my body seems to be.
Dirk had been repeatedly rejected whenever he attempted to move a friend-

ship to a more sexual place. In one interview he characterized what he believed
women meant by this limitation: You can come in my house, but leave your dick
outside! Harlan Hahn put it well almost thirty years ago, when he wrote: In a
society dominated by physical standards and conventions which visibly disabled
persons seldom can hope to approximate, they are frequently compelled to as-
sume a role that denies the sexual aspects of their being (Social 226). This was
substantiated by many of the men whom I interviewed.
For Dirk even when he was finally on the verge of being sexually intimate with
a woman, his difficulties were not over. Although Dirk knew the conditions that
would trigger his bodily betrayal, he could not cohere all aspects of his socio-
sexual situation into a satisfying theory of his fear. My contribution relied on
situating the story of this particular fear in the context of his entire narrative,
drawing from his discussion of his theories about his hypersensitivity and of the
judgment that he felt often came between him and nondisabled others in social
situations more generally. For example, we were discussing the issue of putting
yourself out there socially. Dirk had just told me a story about a recent everyday
social encounter in which he fell apart because he felt he was being judged. I
asked him to expand on what he thought was going on in such situations:
I respond a lot to what I think the other persons putting out . . . people who
I think are a little iffy, I kind of fall apart with. I lose control physically be-
cause I lose control emotionally, unfortunately. So even though I had just
finished tutoring people all day without even thinking about my speech,
all of the sudden I found thatI could talk, but I was having more trouble
[inaudible] . . . that was because I was feelingmy best answer is that I was
responding to his doubts about me. I mean thats a kind of small example,
we were talking about people who try and who are out there. But I think
the reason that youre out there or not is made up of many . . . individual
encounters, the sum total of which either they leave you confident or . . .
they undermine you. As I get older Im better at it, but its still hard for
me. . . . I think that people will look at me and think Im a fool or an idiot.
Like I look funny, so therefore I must be less [inaudible] . . . Im a little too
empathetic. Empathy is a double-edged sword [inaudible]. When I want to
torture myself, I often imagine how I would be under torture.
As William Wilkerson notes, experiences have meaning only in relation to

the broader context in which they are experienced (260). From Dirks discus-
sion of not only other sexual encounters but also, importantly, of nonsexual
interactions in which he experiences what he describes as empathy with an-
others evaluative gaze, he and I constructed a coherent interpretation of his
fear in sexual situations. My part was to provide some of the theoretical glue to
bind together his various insights into both his sexual and nonsexual interper-
sonal encounters and to help crystallize a plausible explanation. Given the back-
ground of his hypersensitivity to the evaluative gaze, it appeared that Dirk had
become habituated to staying on the platonic side of the line between friendship
and sexual intimacy and that crossing that line had severe bodily consequences.
His embodied fear of being rejected as a lover results not only from his social
dys-appearance (his failure, that is, to conform to nondisabled carnal contexts
of meaning)although this does underlie his sense of bodily differencebut
also from his empathetic incorporation of others evaluative gazes in everyday
habitual interactions. During a sexual encounter, although Dirk intellectually
understands that he is finally being allowed to cross a boundary, his body re-
sponds out of habit, as if he were still being judged.
Ethnographic interpretations are collaborative fictions whose stories resonate
in meaningful ways with the diversity of research participants interpretations of
their lived experience. Collaboration also exists in situating these individual ac-
counts in relation to one another, as patterns of similarities and differences are
noted and then interjected by the ethnographer into conversations and inter-
views to elicit participants sense of what they mean. In addition, ethnographic
interpretations must be analyzed and situated within a heuristic schema of the
relevant personal, sociocultural, and political contexts.
a CritiCal-interPretive etHnograPHy
of Sexuality and diSability
In the late 1980s Nancy Scheper-Hughes and Margaret Lock developed a critical-
interpretive heuristic schema that has been extremely influential in medical an-
thropology. This schema consists of three bodies: the individual or lived body;

the social body; and the body politic. Each of these bodies corresponds to a
particular level of analysis: phenomenological, social-symbolic, and political-
structural. Scheper-Hughes and Locks goal was to reveal the interactions among
these three bodies in the production and expression of health and illness and
to show in particular how emotions often functioned to mediate among them
(Mindful 31). More broadly, Scheper-Hughes and Locks approach participated
in anthropologys renewal of cultural critique in the 1970s and 1980s, drawing
especially from the critical theory of the Frankfurt School, whose work had
moved beyond a strict Marxian approach to incorporate criticism of science
and culture.5 Their approach also reflects interpretive anthropologys focus on
reflexivity and hermeneutics, stresses the negotiation of meanings in specific
localities, and explores the symbolism that pervades human social life (Lock
and Scheper-Hughes, Critical 4850).6 Scheper-Hughes and Locks approach
thus explicitly incorporates a critique of symbolic meanings and their social im-
port and the structuring of contexts in terms of their political import; but it also
attempts to show how participants contend with and resist these meanings and
structures in their daily practices, embodied experiences, and emotional lives.
Their tripartite schema was proposed as a heuristic device; in discourse and ex-
perience, all three bodies overlap.
Critical-
favored by Scheper- Hughes
interpretive and Lock, is
ethnography, well suited
minus for interrogating
the focus the sexual
on health and illness
access issues of disabled people in which sociocultural meanings, political struc-
tures, and disabled peoples interpersonal interactions converge in particular
sociosexual situations. A social-symbolic analysis can ascertain how cultural
meanings of disability and sexuality imbue disabled peoples sociosexual situa-
tions; a political-structural analysis can reveal how particular hierarchies and
relations of power are embedded in these meanings of disability and sexuality
and disabled peoples sociosexual situations; and an analysis of disabled peoples
interpretations of their lived experiences can impart how their felt sense incor-
porates and resists these meanings and hierarchical relations in everyday life.7
tHe inCorPoration of Sexual oPPreSSion
The ethnographic research I conducted focused on the sociosexual situation of

fourteen men with cerebral palsy who lived independently in the San Francisco
Bay Area. I recorded their personal life histories; their sexual narratives, includ-
ing stories of sexual rejection and successes; their theories on why they experi-
enced sexual prejudice and oppression in interpersonal relations and from the
larger society; my participant observations of their daily life and any sexually
relevant encounters and interactions that occurred. While more than half of
these men had been involved in sexual relationships at one time or another, and
in fact several men were in relationships when I was interviewing them, most of
them conveyed to me a powerful sense of their contention with what they per-
ceived as negative prejudices toward their sexuality. They offered many insights
about the sources of these negative views, providing theories that ranged from
a Darwinian account of survival of the fittest to a sensitively drawn psychody-
namic model; I included many of their ideas in the final ethnographic text. Their
diverse perspectives had in common a concern with what, retrospectively, I have
defined as sexual access.
The disability rights movement and disability studies often use the notion
of access to evaluate the effects of a disabling society. But while barriers to dis-
abled peoples sexual expression and experiences have certainly been noted in
prior work (Shakespeare, Gillespie-Sells, and Davies 1643), disability studies
scholars have balked at taking the extra step of theorizing this state of affairs as
an access issue.8 Perhaps this reluctance occurs in part because putting sexuality
on par with such topics as education, work, and the built environment shatters
the cultural fantasy that sex and love are somehow separate from the mundanity
of everyday life. Making sexuality an access issue, however, politicizes disabled
peoples sexual lives and, in doing so, demands a critique of the concepts prior
restriction to rights-based discourse. A quote from one of the participants in
this research clearly illustrates this point: I dont give a flying fuck about the
AdA because thats not gonna get me laid! (qtd. in Shuttleworth, Search 264).9
Indeed, there are clearly many aspects of sexuality and desire in contemporary
cultural contexts that can benefit from critique, especially in conjunction with a
political analysis of disability. For example, preferences for certain physical and
social characteristics in a sexual partner vary across cultures, and access to typi-
cal avenues of sexual expression and sexual negotiation are highly influenced
by how well one embodies the cultural norms and expectations of personhood
and desirability in a society. In present-day U.S. society, for instance, expecta-
tions of masculine dispositions and practices, efficient bodily functioning, self-
sufficiency, and so on, set up an adverse context with which disabled men must
contend. In one way or another, all barriers encountered by the men with whom I
conducted fieldwork can be traced to these mens perceived failure to adequately
embody these social norms and expectations.

Carl, a disabled college student, analyzes the ways in which normative mean-
ings and expectations act upon his sexual sense of self and constrain him in his
sexual negotiations with desired others:
I dont even envision myself as a sexual individual. I pretty much see my-
self as asexual. Not that I dont have sexual feelings, but like me in a rela-
tionship seems too foreign and so impossible . . . because I cant see myself
doing it. Part of me doesnt feel worthy. . . . I think the biggest barrier for
me is me. I dont feel adequate and its sort of like, a circular reason sort of
thing. . . . The reason that I dont feel adequate is because of other things
out of my control, like social constructions of the body, of masculinity, of
my ability to do the proper kind of courtship and stuff. . . . So when I say
the biggest barrier is me, yeah me but its me consists of a lot of external
factors that are not within my control.
Brent, a thirty-two-year-old gay man, refers specifically to how his body image is
affected: I was not good at meeting people and I didnt have a very good image
of myself, especially in regards to feeling attractive and feeling sexy. . . . Youre not
going to fit the look that many people are looking for if they have a pretty narrow
physical type. . . . Very rarely am I going to fit that real well because I walk with
crutches and I dont sit up straight and my body is relatively undeveloped. One
analytical tool that was particularly useful in apprehending these mens sense
of contention within their sociosexual situation was analysis of the lived meta-
phors they used.10 Lived metaphors are ontological metaphors that disclose the
interdependency of body and mind, self and world (Jackson 9). Falling, for
example, is similarly felt ontologically as disorienting, whether it is a physical fall
or a social fall that is the actual referent. The most striking metaphors these men
employed to describe their sociosexual situations were of barriers such as walls
and other kinds of blockages. These metaphors enabled the participants to de-
scribe complex convergences of cultural, sociopolitical, and interpersonal layers
of exclusion in ways that indicated an embodied sensitivity to their sociosexual
situation. Several men predominantly employed metaphors locating these bar-
riers in societys normative expectations or in the explicit and implicit rejections
of those with whom they desired sexual intimacy. For example, Jim, a man with
both a mobility and a speech impairment told me: after I get to know them
better and they know me, I will try to make certain advancements, and a wall
will come; and thats when I get very mad and angry because I dont understand
the purpose of that wall, and I dont believe that Im moving too fast or anything,
but Im often surprised at how fast that wall comes up.
Some mens metaphors, howevereven though the men rationally know it is
the others evaluative gaze that fixes them as lacking sexuality and masculinity
tended to focus on themselves. They spoke of themselves as having constructed
protective barriers (Ive blocked off that sexual part of me), or they focused
on an aspect of the self that seemed to stifle their intentions (the dark or weak
side of me rises up). A few men used metaphors that spoke simultaneously of
others resistances to their sexual overtures and to their own sexual self-doubts.
Josh, for example, who uses a wheelchair and communication board, in describ-
ing his experience of wanting but not being able to express romantic interest to
a particular woman, would tell me, Russell, I feel blocked. Such metaphors were
the most striking indication of what is often termed internalized oppression, but
what I think would better be described as an embodied incorporation of adverse
cultural meanings and habituation to sociosexual rejection.
In Joshs particular case, we explored the contexts surrounding the use of his
metaphors, and I brought into play my long-term observations and participation
in his everyday life.11 I interpreted his sense of blockage as expressing simulta-
neously his implicit self-comparison to hegemonic ideals of attractiveness and
desirability, an embodied (felt) sense of others resistance to seeing him in a
sexual light, and the grip that these had on his self-agency. Josh, it seemed to me,
felt this barrier ontologically, as a culturally derived hierarchical structuring of
desirability and body-self values that effected sociosexual force and that nega-
tively gripped his sexual agency (Shuttleworth, Symbolic 76). This interpreta-
tion shows how social-symbolic and political-structural aspects imbue Joshs felt
sense within his particular sociosexual situation. I presented this interpretation
to him, albeit in less conceptual terms, and Josh conveyed to me that it indeed
made sense.
reSiSting tHe imPoSition of aSexuality
Most of the men I interviewed intermittently resisted the cultural imposition of

an asexual status upon them. Some were particularly adept at what I term de-
fusing the adverse context of disability and desirability; that is, they were able
to psychically, emotionally, and socially render virtually impotent the cultural
meanings and interpersonal relations that worked to deny their sexuality. In a

sense, defusing is the transformation of these mens everyday contentions with
barriers to sexual intimacy into a mode of resistance in which they refuse to
resign themselves to the ways that they are negatively perceived in the cultural
imaginary. This move has previously been interpreted as inverting or reversing
dominant cultural perceptions of asexuality, transforming them into the basis of
a positive sense of sexuality (Guldin, Self 236). For example, David, who uses
a wheelchair and has dysarthric speech, describes the process of reframing his
despair by turning upside down the sexual hierarchy in which, he perceived, he
was positioned at the bottom: it became increasingly like I was reaching into
societys sleeve and turning it completely inside out. And from the moment of
very, very deep despair, I was able to completely turn the situation around. And
I chose the most comfortable situation, which was, I would say, I was sane living
in an insane world (qtd. in Shuttleworth, Pursuit 207). An active resistance
enabled some of these men to take advantage of the nonconventional contexts
that they inhabited, such as rehabilitation hospitals, summer camps for disabled
adolescents, 1970s communes, and the interpersonal situation of being provided
with personal assistance. In these spaces sexual interactions might occur and
relationships bloom. Then, too, resistance could lead to employing nonnorma-
tive bodily functioning as sexual catalysts. For example, one man gave sensual
massages with his feet, and another incorporated his spasticity into his love-
making. Countering the normative view of desire and desirability by the deploy-
ment of sexuality with their own sexualized bodily difference, several of these
men further developed an alternative sexual ethics through certain self-practices
(Shuttleworth, Pursuit 21621). For example, Fred, who uses a wheelchair and
an alphabet board and is in a group marriage with several women and men, was
able to cultivate a shift in his own life and in the lives of many of those with whom
he comes into contact by facilitating nude performances involving communal
intimacy: a shift from genitally focused sex to intimate erotic play in which emo-
tional communication is prized.12
Resistance can also take collective form, as in the movement for disabled
people to be included on the sexual rights agenda (Shakespeare, Sexual Poli-
tics 159; Shuttleworth, Disability 19294). What Anne Guldin refers to as
disabled peoples current claiming of sexuality counters the cultural myth of
asexuality and undesirability and marks a collective bid for sexual subjectivity
(Self 232). For example, the Sins Invalid performance in 2006 in San Francisco
showcased a diversity of artists whose bodily configurations transgress norma-
tive models. These artists expressed themselves on sundry sexual issues with the
intent of challenging the dominant cultural understanding of disabled sexuality
and what constitutes a desirable body. As the advertisement for the show boldly
proclaimed:
Sins Invalid: An Unashamed Claim to Beauty in the Face of Invisibility.

Sins Invalid invites a re/view of embodiment, with performers and video
artists speaking their minds and stripping taboos off of sexuality and dis-
ability. A performance event to reveal poetic bodies and hot activism, it is a
healing for all who challenge themselves honestly when unearthing sexual
expression. Expect to hear an unabashed claim of desirability in a world of
embodied and enforced norms.
Is this particular collective claiming of sexuality in the face of a hierarchy of

social personhood and bodily desirability, however, simply a bid for normative
sexual subjectivity? Or does it indicate something more? In short, do images
such as poetic bodies and hot activism, both in the shows advertisement and
also performed on stage that night, reveal an aspiring impetus to search out new
terms of erotic understanding beyond those circumscribed by desire (Foucault,
History 157)?
tranSformationS?
Several years ago, buoyed from talks with several research participants on their
erotic cultivation of particular bodily and functional differences and their impe-
tus toward creative sexuality, I concluded: Disabled sex could assist in transform-
ing our vision of sexuality from one of function, hierarchy, idealized relation-
ships to one of creative communication. Certainly, disabled sex as more creative
than non-disabled sex was an interpretive move by participants to invert ability
and disability (Guldin, Self 236). Yet to limit this move to inversion would be
to ignore the heightened awareness of communication that can sometimes be
obtained through creative endeavor and would thus strip it of an implicit trans-
formative potential (Pursuit 293).13 From a different but no less culturally sug-
gestive perspective, Margrit Shildricks recent work theorizes disabled people in
their everyday lives as assuming a performative interconnectivity (for example,
through the use of personal assistants or prosthetic devices) that break[s] with
the putative emergence of a coherent sexual subject from practices of embodi-

ment and allows for transformative possibilities (Queering par. 17). In a larger
sense that also moves beyond the focus on disabled peoples sexuality, Shildrick
further suggests that the restrictive performativity of (sexual) subjectivity could
be radically transformed for everyone if the Western notion of the autonomous
individual and integrated identity were opened up to allow for more flexibility
(Queering par. 20). While Shildrick acknowledges that it is not that disability
is a unique case, but only that its forms of embodiment seem to overdetermine
the fragility and instability of corporeality in general, the implication is clear
that disabled bodies can serve as a window onto the construction and transfor-
mation (and thus transformative potential) that all bodies undergo (Queering
par. 20).
Yet while I would not want to dampen a visionary aspiration, in disability
studies and the larger culture, toward the transformation of desire and sexual
subjectivity into terms based less on hierarchy and more on interconnectivity
and intimate communication, perhaps my inclination for ethnographic ground-
ing requires that I raise a note of caution. Indeed, speculations about cultural
transformation are far removed from most disabled peoples immediate con-
cerns. In fact, despite the erotic cultivation of bodily difference by some of the
men I interviewed, the immediate aspiration for the majority was to bring into
and maintain in their own lives sexually intimate relations with others, without
necessarily transforming cultural understandings. Only later in several of the
mens description of their development is there an overt understanding of the
cultural stakes involved (Shuttleworth, Disability 192). And while notions of
impairment or disability, shorn of their employment as markers of identity, as
paradigmatic models of subjectivity, or as suggestive of potentiality, are seduc-
tively invoked in disability theory in the past decade, in retrospect such analyses
may appear to have participated in a degree of romanticism.14 Human science
researchers are continually reminded of the significance of cultural context and
social location for the particularities of a groups pragmatic situation in the world
and their identification with, and interpretive perspectives on, that situation. It
might therefore be prudent to exert a certain cautious skepticism in our aspira-
tions to transpose positively construed local outcomes to a more general cultural
sense, even though the notion of sex as creative communication and perception
of the fragility and instability of corporeality may be open to all. Any such at-
tempts will inevitably entail arduous conceptual and pragmatic challenges.
noteS
The research in this chapter was assisted by a fellowship from the Sexuality Research
Fellowship Program of the Social Science Research Council with funds provided by
the Ford Foundation. I want to thank Anna Mollow for important critical feedback.
My use of the term sexuality in this chapter does not strictly accord with certain
uses of the term, influenced by Michel Foucault, that are common in the humanities
today. A Foucauldian understanding of sexuality certainly lends itself to analysis of the
deployment of this historical formation and its manifold effects on subjects. Never-
theless, participants in the research I report on in this chapter interpret their sexuality
as a multilayered, dynamic, and expressive aspect of their sense of self. While on one
level this reaffirms Foucaults analysis, and I sometimes employ the term in his sense,
I also want to respect participants understanding of the complexity of this notion as
they believe it plays out in their lived experience, especially when using the concept
of sexual access. I have used the term sex sparingly in this chapter, because I do not
want sexual access to be misconstrued as simply about physically intimate encounters
and relationships (even when that is the overt meaning in a particular case).
1. In 2002 Linda Mona and I referred to some of the many issues that disabled
people confront in their sexual lives as sexual access issues (Shuttleworth and Mona
25).
2. See, for example, Holstein and Gubrium 14142; Clifford 67; Lock and Scheper-
Hughes 4849.
3. Depending on their theoretical proclivities, different researchers working with
the same participants would construct different ethnographies, although many par-
ticipant concerns would likely remain similar. In the spirit of critical theory, however,
an emancipatory principle remains central to my research, according to which social
responsibility to participants is a mandatory component. See Meekosha and Shuttle-
worth 5156; and Shuttleworth, Disability 18184.
4. All names are pseudonyms. I chose to study men in order to facilitate participant
and researcher rapport during interviews on what I considered a very sensitive topic.
However, I also interviewed a few women for a gender contrast. In retrospect, my fears
that women would not open up to a male interviewer appear to have been unfounded.
My snowball sample turned up eleven men who were solely attracted to women; one
gay man; one man who, although identifying as heterosexual and in a relationship with
a woman when I interviewed him, had experienced several brief one nighters with
men and following the completion of the study came out as gay; and another man who
was in a group relationship with several men and women. The latter man refused to
categorize his sexual orientation, although in many hours of interviewing him and in
the fourteen years I have known him, he appears more sexually attracted to women.
5. For a consideration of anthropologys renewal of cultural critique, see Marcus and
Fischer.

6. It bears repeating that Clifford Geertz, the acknowledged guru of interpretive
anthropology, was significantly influenced by Paul Ricoeurs hermeneutics and his tex-
tual approach to human interaction (Geertz 330).
7. I dont want to give the impression that the critical-interpretive ethnography that
participants and I fashioned was strictly oriented by Scheper-Hughes and Locks ap-
proach. Theirs was simply one perspective among many that formed the background
to the conceptual framework that I employed. However, in retrospect their heuristic
device of the three bodies encapsulates neatly the aspects that were important for me to
elucidate. In an important paper that predates my own write-up, Anne Guldin explicitly
refers to Scheper-Hughes and Locks notion of the lived body in her own ethnography
of the sexuality of seven mobility-impaired persons in the United States (Claiming
4548). To my mind, though, Guldin fails to adequately flesh out this idea in the texture
of her participants lived experience.
8. Tom Shakespeares work on sexuality and disability references the British so-
cial model, discusses some of the social and cultural barriers that disabled people en-
counter in their sexual lives, and also suggests the relevance of other disciplinary and
conceptual perspectives (for example, sexual citizenship, feminism, and queer theory)
in tantalizing ways but does not rigorously theorize sexual access. I am nevertheless
deeply indebted to Shakespeares groundbreaking work.
9. As I have argued in my other work, the concept of access resonates with an
existential-phenomenological sense of being obstructedor notin our everyday
experiences of the world. The existential resistance and felt obstruction toward an in-
tention can be (but, of course, is not always) the cue to our restricted access or exclu-
sion from a sociocultural context within a society that may or may not be amenable to
rights-based strategies. See Shuttleworth, Disability 179.
10. See Shuttleworth, Pursuit 16689; and Symbolic 7989.
11. I have been a friend of Joshs for many years and first started working for him as
a personal assistant in 1984. In the mid- to late 1990s, I also resided with him as a live-
in personal assistant, at which time he became the main participant in the study.
12. This is not to say that genitals and orgasms are banned from Freds eroticism,
just that they are not accorded dominant status. See Shuttleworth, Pursuit 20916.
13. I am indebted to Linda Mitteness for helping me clarify that an aspect of what
these men were trying to convey was a change in the meaning of sex from instrumental
self-gratification to emotionally charged erotic communication. Although this is most
clearly seen in Freds story, it is also implied in some of the other mens accounts.
14. See, for example, Davis, Bending 932.
3
Michel desjaRdins
tHe Sexualized body of tHe CHild

Parents and the Politics of Voluntary sterilization
of People labeled intellectually disabled
According to social sciences literature of the past few decades, the sexuality of
people labeled intellectually disabled has been systematically repressed within
Western societies since the rise of the Industrial Revolution and the bourgeois
moral order (Gateaux-Mennecier 81). During the past two hundred years, this
literature posits, two rival images have been used to legitimize the containment
of the sexuality of these people: the seraphic idiot and the Mephistophelic idiot
(Block 250).1 The seraphic idiot is a person labeled intellectually disabled who is
believed to be an eternal child: pure and asexual, guileless and fragile, and un-
able to face the dangers of sexuality (Dupras, Dsexualisation 47; Edgerton
97). In contrast, the Mephistophelic idiot is a wild and diabolical being, half-
beast and half-demon, dominated by instincts, without morals or law, concu-
piscent and libidinous, whose hyper-sexuality jeopardizes the security of the
social order (Block 245; Gateaux-Mennecier 32; Ryan and Thomas 102). Even if
these two figures had been part of the Christian imaginary since its beginning
(Stiker, Symbolisations 37), they acquired a new profile at the turn of the indus-
trial age, when asexuality (for the seraphic idiot) and depraved sexuality (for the
Mephistophelic idiot) suddenly became their dominant traits.
Medicine and social work had the mission of identifying and controlling
those among the pauperized, the outcast, and the defective who were not sexu-
ally disciplined before they spoiled the whole of society; it did so by way of thera-
pies or eugenic measures (Stiker, Franchir 237). In the case of people labeled
idiots, morons, or feebleminded, according to the authors of that time, un-
bridled sexuality could take two opposite forms, one passive, the other active.
Some of the feebleminded were held to be too vulnerable to resist the advances
of the unruly; by contrast, others were held to be insatiable sexual predators.
In response to these opposing representations, some factions of society felt an
urgent need to protect the angelic idiot from the dangers of sexuality, while other
factions wanted to protect society from the lasciviousness and the vices of the
demonic idiot. Between 1800 and 1960, three measures were adopted in order
to attain both of these goals: institutionalization, eugenic sterilization, and spe-
cial education (Stiker, Symbolisations 40; Gateaux-Mennecier 115). These three
measures and the two rival figures of the idiot (seraphim and Mephistophe-
les) began to be criticized by the beginning of the 1960s, coinciding with the
emergence of civil rights movements. Scientists, health professionals, educators,
workers in community-based organizations, and parents of intellectually dis-
abled people began to criticize the pitiful life conditions within asylums and the
involuntary sterilization of many residents. This movement of reforms rapidly
extended beyond the asylum to contest other forms of discrimination toward
people labeled intellectually disabled (Rodier 7).
Today in Quebec, where I conducted the research I will discuss in this chap-
ter, most people labeled intellectually disabled live within the community, and
their rights are highly respected by public institutions and services. Involuntary
sterilization became illegal two decades ago, and the majority of service institu-
tions have adopted charters that protect the sexual rights of mentally disabled
individuals. From a legal, governmental, and institutional perspective, during
the past forty years individuals labeled intellectually disabled have been progres-
sively stripped of their imagined sacred attributes (seraphic or Mephistophelic),
as their full humanity and right to be regular members of society have been af-
firmed. Nevertheless, Pamela Block and others note, the figure of the Mephisto-
phelic idiot is still invoked today, both in the defense of those accused of sexual
abuse against intellectually disabled women and in the prosecution of intellec-
tually disabled men accused of sexual crimes (245).2 In contrast, she and other
researchers note, some contemporary parents see their intellectually disabled
children as asexual and chaste seraphim, juvenile and lacking in any erotic desire,
70 Michel Desjardins
and unable to face the many dangers of sexuality (such as abuse, prostitution, ill-
ness, and unwanted pregnancies).3 In conformity with this representation, Block
and others claim, parents systematically constrain the sexuality of their disabled
children, monitoring all of their social activities and movements in order to pre-
vent exposure to potential dangers.
Contemporary authors agree that people labeled intellectually disabled must
be liberated from their parents confining, overprotective shield. Intellectually
disabled individuals must leave the family sanctuary and start to live within the
world of adults. However, these authors specify that this passage from the family
to the world beyond, from infancy to adulthood, cannot be achieved without the
parents contribution. Therefore, the parents conceptions of their children must
change through education, in order to emancipate them from the archetypal
figures of the seraphic idiot or the eternal child. In particular, these researchers
argue, the parents must be freed from their superstitions, the phantasms and
the taboos that regulate their attitudes toward their childrens sexuality and keep
them apart from modernity, reason, and human rights.
This research makes important observations and arguments. Yet it is not clear
that such a severe and disqualifying judgment does justice to the richness of the
parents ways of life, the complexities of their knowledge systems, or the nuances
of their representations of their children. Indeed, none of the authors mentioned
above has listened to the stories of the parents in their totality. These authors do
not look beyond the references to the angelicism of the child and the worries
related to sexuality. They do not attempt to understand from the inside, that is,
from the perspective of the cultural meaning systems that structure the parents
lifeworlds, the parents representations, attitudes, and conduct.
In response to what I regard as an unjustifiable disqualification of the parents
of intellectually disabled people, the research I present in this chapter explores
parents representations and attitudes toward the sexuality of their disabled chil-
dren. Specifically, I aim to reconstruct the cultural meaning systems that struc-
ture parents behaviors, attitudes, and the representations of their intellectu-
ally disabled childrens sexuality. By means of open-ended and semistructured
interviews, fifteen parents were invited to share their visions of their childrens
status as people; they were asked to share thoughts on their childrens social
status, body, intelligence, emotions, romantic life, sexuality, desire for children,
reproduction, capacity to marry, school education, leisure activities, place in the
family, place within society, and future prospects. The sample, which was re-
cruited from twelve families, included twelve mothers and three fathers, whose
The Sexualized Body of the Child 71

ages ranged from forty to seventy years. The parents were interviewed three
times, with one open-ended life history interview and two semistructured inter-
views (nine parents individually and six as couples), between January 2000 and
May 2000, usually in their homes. The parents resided in various areas of greater
Montreal. All were French speakers, and only one was an immigrant to Canada
(the seventy-year-old father, who, at the time of the interviews, had lived in Que-
bec for almost forty years). To recruit participants, I sent letters to the parents of
clients of a rehabilitation center and to the members of two relevant community-
based associations.
The children of the participants (seven males and five females) were labeled
intellectually disabled and were aged between fifteen and twenty-five years (the
mean age was eighteen), which means that they were born between 1975 and
1985. This particular era was a period of rapid and significant cultural changes in
Quebec regarding the status and the rights of disabled people. By the midseven-
ties, the ideology of normalization and integration had become the dominant
trend within service establishments and community-based organizations. Some
of the largest institutions in Quebec closed during this time and were replaced
by services integrated into the community (Rodier 5). Following the publication
of the ministerial document LIntgration des Personnes Prsentant une Dficience
Intellectuelle: Un Impratif Humain et Social in 1988, the late 1980s were marked
by the universalization of programs of reintegration and normalization within
the service establishments of the province. During the same period as well, the
sexuality of intellectually disabled people began to be normalized and accepted,
at least in official discourses and politics. As stated above, involuntary steriliza-
tion became illegal, and service establishments and community-based organi-
zations alike began to adopt charters to protect the sexual rights of their clients
or members. These included the rights to sex education, sexual rehabilitation (of
sexual offenders), protection against sexual abuse, expression of sexuality, repro-
duction, and parenting. In short, the fifteen participants in this research raised
their children during a period of major innovations and changes, filled with
optimism for the future of intellectually disabled people, and with the support
of governmental agencies and community-based organizations that promoted
mainstreaming and normalization in all domains, including sexuality.
In this chapter I explore the attitudes of the parents toward the sexuality of
their intellectually disabled children, the parents visions of their children as
people and sexual beings, the parents strategies for controlling their childrens
fertility, and the dynamics between the parents practices and the global social
context of which the children are a part. Among other things, I will describe
the means by which, despite the recent openness of the parents in regard to the
expression of their childrens sexuality, the prohibition against reproduction is
nonetheless implemented. Further, I will demonstrate that the parents, through
the use of the bioethics procedure, succeed at transforming the law banning im-
posed sterilization into a fiction, a mystification; this transformation, I show,
symbolically turns the childs subjugation into assertiveness. Finally, I will con-
sider the ambiguous nature of this mystification, which reflects simultaneously
the parents skillful resistance to the normative power of the state and their sub-
mission to this very state, as it confirms that they endorse the extraordinary
world that the statein contradiction of its own laws and politicsactually im-
poses on their children, namely the scale model world of intellectual disability.
tHe new extraordinary Sexuality
As I was conducting the interviews, I observed with surprise that, contrary to

what is claimed in the literature, the parents did not angelicize their child,
did not asexualize him or her, did not transmit to him or her a negative atti-
tude toward sexuality, and did not block the expression of his or her sexuality
(Desjardins, Tabou 59). Indeed, according to the parents, eight (four males
and four females) of twelve adolescents and young adults regularly (involving
eleven of the fifteen parents) express nongenital sexuality, and they do so with
the approval of their parents, who consider that these exchanges contribute to
their childs sexual development. As far as genital sexuality is concerned, eleven
young people (the exception is a nineteen-year-old female) practice (or have
practiced) autoeroticism, once again with the support of their parents (thirteen
parents of fifteen), who consider that masturbation is a normal step of sexual
growth. Only one young adult (a twenty-five-year-old female) has access to
heterosexual intercourse, with the approval of her mother. Three other young
adults (eighteen, nineteen, and twenty-one years old; two females and one male)
enjoy parentally supervised access to caressing and mutual masturbation, with
parents (four of fifteen) favoring a step-by-step progression toward heterosexual
intercourse. Four other parents affirm that, even if their child (seventeen, eigh-
teen, and nineteen years old; three males and one female) has never experienced
genital exchanges, he or she will likely eventually do so; the parents not only ap-

prove but also encourage this by registering their sons and daughters in sex edu-
cation courses and by talking about sexuality with them on a regular basis. Five
other parents said that because of their childrens (fifteen, eighteen, and nine-
teen years old; three males) mental health problems, severe language disorders,
or major cognitive impairments, they are uncertain if they will eventually have
intercourse, but they want their children to have this experience because they
believe that it will enhance their physical and emotional well-being. In brief, only
two parents do not wish such an outcome for their adult child, a nineteen-year-
old female. The parents of this young adult believe that genital sexuality is not
part of her desires and interests, which the parents equate to those of a five-year-
old. By contrast, all the other parents acknowledge that their adolescent or adult
children are sexual beings; that masturbation, genital exchanges, and intercourse
are, or will be, part of their sexuality; and that they must be taught how to ap-
propriately express sexuality.
Yet despite this new recognition of the importance of genital sexuality in the
lives of people labeled intellectually disabled, the sexuality of this group can still
be considered abnormalseparated, that is, from the sexuality of the majority,
and subjected to a series of extraordinary rules and controls. The adolescents and
young adults labeled intellectually disabled are permitted to express nongenital
sexuality only within particular spaces, where they can be seen and/or are sub-
ject to others rules (e.g., in supervised ballrooms or in the family house). The
childs participation in genital sexual exchanges with others is orchestrated by the
parents. Further, the young adults access to intercourse is subject to three condi-
tions imposed by their parents: use of contraception, precautions against vene-
real disease, and monogamy with a loved partner. While Malthusian measures,
antivenereal prophylaxis, and love are valued in modern societies, they are not
usually imposed by a third party. Furthermore, the prohibition against reproduc-
tion is one of the dominant features of the social control of the sexuality of men-
tally disabled people; the ostensible necessity of this prohibition serves to justify
the extreme surveillance these individuals are subjected to in every context. It
seems that some parents have participated in the creation of a new extraordi-
nary sexuality for their adult or adolescent children. This is neither the sexu-
ality of the angel, or the eternal child, nor that of the majority of the population
(who are not prohibited from reproducing). As a first step toward investigating
the meaning, function, and moral value of this new extraordinary sexuality, I
carefully examine the conceptions and representations that the parents have of
their adult and adolescent children, as people and as sexual beings.
tHe CHildS ambiguity
In their discourses and stories, the parents represent their children through three
images: the perpetual child, the normal adolescent or young adult, and the
special adolescent or young adult. In accordance with these three figures, they
say that their child is not one but three persons, three entities, each evolving in
a distinct world: the world of childhood, the world of mainstream life, and the
adapted world of intellectual disability. According to this model, the intellectu-
ally disabled persons development is not homogeneous and linear but is instead
divided among three parallel times and life cycles, one for each of his or her
entities and worlds. The first of these life cycles includes the multiple aspects of
the intellectually disabled individuals lifestyle and being that remain youthful
despite his or her adolescence or young adulthood. Examples include passion for
childrens toys, movies, and games; reduced competency in some spheres of
intellect, such as mathematics, literacy, and temporality; extreme vulnerability;
exceptional need for support and protection; unbridled spontaneity; exuberant
kindness; unbounded generosity; and remarkably acute emotional intelligence.
The second life cycle comprises the diverse aspects of the individuals lifestyle
and being that the parents associate with normal adolescence or young adult-
hood. Examples of these include cherished music and clothing, a passion for
love, attraction toward sexuality, posters hung in the individuals bedroom, in-
sistent requests for more autonomy, and the miscellaneous daily life competen-
cies that are mastered to proficiency by other people of similar ages. The third
life cycle refers to the numerous aspects of the individuals lifestyle and being
that take place within adapted contexts or environments: for example, the special
pedagogic program within the ordinary class, the special class within the ordi-
nary school, the special high school, the adapted workshop or job, the special
dance or adapted holiday camp, the special bowling league, the Special Olympics,
the supervised apartment or group home, and so forth. In each of these scenes,
the intellectually disabled individual behaves neither as a child nor as a nondis-
abled adolescent or young adult, but instead as a special adolescent or young
adult. The individuals life within these enclaves is both like and radically differ-
ent from that of nondisabled adolescents or young adults. Even if the young per-
son studies, works, practices sports, dances, kisses, goes camping, travels, resides
in an apartment, and so on, each of these activities is accomplished at a reduced
scale. That is, these special activities are designed according to norms, prin-
ciples, rules, criteria, obligations, privileges, and rights that have been adapted

to the intellectually disabled individuals capacities and particular needs (Des-
jardins, Jardin 182).
The parents are convinced that their children will forever remain divided
into three persons. Thus, when the individual attains maturity as an adult, he or
she will still remain a trinity: a perpetual child, a normal adult, and a spe-
cial adult. One part of the child will still be puerile, another part will have fully
grown into adulthood, and a third part will have blossomed into an exceptional
form of adulthood, a miniature version of typical adulthood. The parents infer
from this triple identity that their children will never be either completely inte-
grated into society or completely excluded from it. Rather, throughout his or her
life, the intellectually disabled person will have to move constantly, as circum-
stances dictate, between the center and the fringes of collective life. The parents
emphasized that they had resisted this sporadic model of social integration for
a long time. They had seen this model as contradictory to their initial efforts
to integrate their children into the whole of society. But the parents realized,
as their children grew up, that total inclusion could not respond to all of their
needs, and especially two: the need to succeed in life and the need to belong to
a star group.4 In other words, the parents have come to think that sometimes
their adult or adolescent child has a better chance of getting a sense of well-being,
and of real satisfaction, from activities and social relationships pursued within
the confines of the adapted world of intellectual disability (among peers) than
within mainstream society.
tHe triPle Sexuality of tHe intelleCtually diSabled PerSon
Consistent with the model discussed earlier, the parents view the sexuality of
their adult and adolescent children in three ways: certain aspects of sexuality are
normal, others are childlike, and some others are adapted to a scale model ver-
sion of normal sexuality.5 Most of the parents (thirteen of fifteen) believe that
their children (eleven of twelve) have erotic drives that are similar to anybody
elses and that they must be allowed to explore their own bodies, masturbate,
exchange kisses, share caresses, engage in foreplay, and, when ready, experience
sexual intercourse. These parents are convinced that if their adult or adolescent
children are supported adequately, they will eventually be able to enjoy fulfill-
ing erotic bonds. Further, these parents are dedicated to providing their children
with appropriate guidance. For the majority of parents (thirteen of fifteen), this
attitude toward the intellectually disabled persons rights to express his or her
sexuality (eleven of twelve) is not tied to any specific sexual orientation. Twelve
parents said that they were convinced that their children were heterosexual, since
they had always been strongly attracted to individuals of the other sex. Among
this group, ten parents (ten of fifteen) declared that they would not restrain their
childrens sexual expression (nine of twelve) if they realized that their children
were not heterosexual, while two parents (two of fifteen) said that in such a case
they would not approve their childs sexual activity (one of twelve, a female).
The three other parents (three of fifteen) said that they were not sure about their
childs sexual orientation (two of twelve, two males) since they thought that they
were still too shy or too young to have clarified this issue. However, they speci-
fied that the clarification of this issue would not affect their willingness to respect
their sons need to express their sexuality.
The majority of parents (thirteen of fifteen) also believe that their children
have the same capacity to reproduce, and the same likelihood of conceiving non-
disabled children, as anybody else. Only two parents, whose children have Down
syndrome and Williams syndrome, respectively, believe that there is a high
probability that their children would give birth to a disabled newborn. Never-
theless, their adult childrens capacity to reproduce worries all the parents, as they
do not believe that these intellectually disabled adolescents and young adults will
ever be capable of carrying out the role of parent. When the parents speak about
this aspect of their childs sexuality, they often stop using the childs first name
or the pronouns he or she, favoring instead the plural and category-specific
they. These pronominal substitutions indicate quite clearly the particular mo-
ments in which the intellectually disabled person ceases to be viewed by his or
her parents as one of us and becomes one of them.
According to almost all the parents (fourteen of fifteen), the combination of
their childrens desires and capacities to have heterosexual intercourse and their
ability to reproduce imperils any children who might be born to them (who
would not be looked after appropriately), as well as the intellectually disabled
individuals themselves (who would feel both incompetent and alienated when
their children were placed for adoption by public services) and the parents of
intellectually disabled adults (who would feel forced to be responsible for their
grandchildren, taking on a position that they abhor, that of perpetual parent).
In order to avoid such disruptive outcomes, these fourteen parents have sought
a solution that would take into account their childrens capacity to express their

sexuality, as well as their unfitness for parenthood. All these parents arrived at
the same conclusion: the need to liberate their children from the threatening
ability to reproduce in order that they might express genital sexuality in safety. To
achieve this goal, the parents required that their child adopt permanent contra-
ceptive devices. Thus, a new sexuality is created for the disabled adolescent or
young adult: a special sexualityor, if you prefer, an adapted sexuality, con-
ceived at the scale of the individuals unfitnessthat includes sexual intercourse
but prohibits reproduction. This special sexuality is the childs third sexu-
ality and accords with his or her status as a special person, as well as with the
adapted world of intellectual disability generated by the step-by-step approach of
the ideology of normalization (Desjardins, Jardin 206; Stiker, Dbat 33). In-
deed, this last sexuality is a miniature, a scaled modelor, if you prefer, a simu-
lacrumof the sexuality of the majority (Lvi-Strauss 150; Deleuze 297; Good-
man 14). The normal sexual behaviors that this last sexuality comprises have
been stripped of one of their most essential elements, as these are commonly
understood in modern liberal democraciesthe capacity to procreateand
have been subjected to a series of extraordinary rules, controls, and prohibitions
(Becker 111; Durham; 145; Park 39).
tHe SearCH for an aPProPriate birtH Control deviCe
Although it was clear to the majority of these parents, from the beginning of
their childrens puberty, that they had to be liberated from a disruptive ability
to procreate, the parents were initially undecided about the best way to achieve
this end. At first, they convinced their children to try some form of chemical
or mechanical contraceptive device, such as contraceptive pills, condoms, or
Depo-Provera injections. However, the parents changed their minds when they
realized that their children could not easily use these devices or that they caused
side effects or posed long-term health risks. Thus, the parents turned to what
they regarded as a safer, less disruptive, more convenient, and more effective
solution. Sterilization, they noted, offered the additional advantage of being de-
finitive, thereby liberating the intellectually disabled person forever from the
dangers of procreation. Rather than insisting that their children be sterilized
right away, the parents took time to think about it, either alone or in conversation
with other parents and with the counsel of several rehabilitation and health pro-
fessionals. At the moment of data gathering, only one adult had been sterilized
(a twenty-five-year-old woman). However, almost all the others (ten of eleven)
were on their way to being sterilized: in one or two years for those individuals
over twenty, in three to five years for those between eighteen and twenty, and in
six to eight years for those under seventeen. Sterilization is the result of a long
process, which starts when the intellectually disabled person is approximately
sixteen to eighteen years old and is usually completed by the time he or she is
twenty-one to twenty-three years old.
This decision-making process regarding sterilization can be divided into
three steps: the parents evaluation of the morality and legitimacy of sterilization,
the conversion of the intellectually disabled persons desire for offspring into a
desire for infertility, and the application for sterilization to a bioethics commit-
tee and its eventual fulfillment. In this chapter, I consider the first two steps of
this process, as only one adult had reached the third. Once the parents realized
that chemical or mechanical contraceptives were not satisfactory solutions for
their adult children, they embarked on deliberations between themselves, with
other parents, and with various professionals regarding the morality and legiti-
macy of sterilization. All the parents came to the same conclusion: in this spe-
cific case, sterilization is morally ambiguous. On the one hand, it reinforces the
intellectually disabled persons otherness and exclusion; on the other hand, it
fosters social inclusion by giving him or her access to sexual intercourse. In re-
gard to the intellectually disabled persons otherness and exclusion, the parents
considered three specific factors. First, their adolescent or adult child is sub-
jected to an exceptional prohibition. Second, this prohibition deprives him or
her of what, for the parents, was a key index of normality and adulthood. And
third, the intellectually disabled person loses a part of his or her body. Clearly, it
is not easy for these parents to participate in taking away their childrens right to
procreate and parent; they have fought relentlessly, since their childrens births,
for normalization and inclusion within most social contexts. At the same time,
the parents also feel that the nonsterilization of the intellectually disabled young
adult is also morally ambiguous; by respecting their childrens bodily integrity,
the parents would endanger both their well-being and their sense of normality.
The intellectually disabled person would either be forbidden to engage in sexual
intercourse or subject to the seizure of any offspring by child welfare services.
Either way, the parents conclude, their children will lose something crucial: if
sterilized, fertility and parenthood; if not, sexual intercourse or offspring. Reluc-
tantly, they chose sterilization, as the lesser of two evils.

law, SymboliC reverSal, and regained erotiCiSm
Since involuntary sterilization is banned nowadays, the parents must convince

their child that procreation and parenthood are not desirable and that steriliza-
tion is the only suitable means of contraception. Only then can any medical pro-
cedures commence. However, parents initially react with ambivalence to these
various options. On the one hand, they consider that the law focuses too much
on the individuals choice and does not sufficiently take into account their childs
difficulty in evaluating the consequences of childbirth, as well as his or her in-
ability to become a parent. Further, the parents are annoyed that their voice is
almost totally silenced from the deliberations of the bioethics committee, even
though the outcome of these deliberations will affect their lives and futures as
much as those of their child. In the end, after all, the parents of the intellectually
disabled individual will become the de facto parents of their childs newborn. On
the other hand, the parents condemn the massive involuntary sterilization drive
that marked the first half of the twentieth century, notably within asylums, be-
cause of its brutality and lack of concern for the sterilized persons dignity, sensi-
bility, and self-esteem. Of these two optionsbeing at the childs mercy or expos-
ing him or her to brutal treatmentsthe parents prefer the first. They believe in
their chances to make their child see reason so that he or she will ask, on his or
her own initiative, to be sterilized. In addition, they feel that from this procedure
their child will gain a sense of empowerment, instead of subjugation, since ster-
ilization will appear to everyone as if it were the fruit of his or her own initiative.
The conversion of the childs desire for offspring into a desire for infertility
is dispersed, as circumstances dictate, over a period of two to five years, while
the child or young adult is between sixteen and twenty-two years of age. This is
achieved mainly by means of four persuasion devices: syllogistic method, role-
playing, catastrophic rituals, and apocalyptic narratives. Specifically, the parents
explain rationally to the child the dangers of reproduction and the necessity of
using safe contraceptive device, namely sterilization. They also engage the child
or young adult in role-playing that simulates, with the help of dolls or raw eggs,
the burden of parenting a newborn. In addition, the parents create babysitting
rituals that are designed to demonstrate to their child that without the saving
intervention of a normal adult, a situation could have disastrous consequences
for the individuals offspring. Finally, the parents tell the child various apocalyp-
tic narratives that announce the horrors and sufferings that will afflict them all
if the mentally disabled individual reproduces. According to the parents, these
tactics usually prove fruitful: the young adult not only agrees to sacrifice fertility
but claims it as a right and demands to be sterilized. The young adult is then ready
to set in motion the final step of the sterilization process, which is to submit an
application for sterilization to a bioethics committee and to undergo the surgery.
At the moment of data gathering, only one young adult had progressed to this
step, but three were just about to submit their applications for sterilization, seven
others were involved in the conversion of their desire for offspring into a desire
for infertility, and the mother of the last individual was just starting to debate the
morality of sterilization.
These persuasion devices, and the anticipated success of the young adults
applications, illuminate the reality that the law banning imposed sterilization is
more often than not a fiction, a subterfuge, which mystifies everyone, including
the parents. Indeed, once the bioethics application is approved, the hold that the
parents had on their child during the second step of the sterilization process is
pushed into the background; it appears to have been erased by their childs voice.
It is, above all else, the young adults own will and understanding of sterilization
that the bioethics committee evaluates, rather than the process that has led him
or her to apply for sterilization. In so doing, the bioethics procedure seemingly
turns a fundamentally collective process of subjugation into an assertion of an
individuals desire. This semantic reversal makes it a lot easier for everyone to
deal with the childs forced sterilization. First, as stated above, the parents antici-
pate that their child will not feel alienated by the sacrifice of his or her fertility
since he or she will be the one to claim it in order to avoid the torments of invol-
untary reproduction. Second, the parents consider that the weight given to their
childs voice during the bioethics procedure releases them from the oppressive
responsibility of imposing a nonstandard sexual destiny on him or her. In the
end, the parents say that sterilization has become their childs personal choice
instead of theirs. Finally, the parents underscore that the respect of their childs
free will is crucial for global society, since it enables the collectivity to reconcile
the moral foundation of modern democratic societies (particularly the notion of
equality as defined by human rights) with the sterilization of mentally disabled
people.
In addition to the aforesaid advantages, the parents are delighted with the
beneficial effects of sterilization on their childs general growth and sexual ful-
fillment. In the parents discourse, the nonsterilized child is considered to be
prenubile; that is, he or she is sexually unfinished, immature, split into two in-
compatible poles (one childish, the other adult) and thus unfit for sexual inter-

course. In contrast, the sterilized child is said to be nubile, or sexually complete:
mature, liberated from inner conflicts, and ready to engage in genital exchanges,
sexual intercourse, loving ties, and marriage. In other words, the parents con-
ceptualize sterilization as not only a prophylactic device and a manifestation of
their childs self-assertion but also as a rite of passage into eroticism, conjugal
love, and adulthood.
Before moving on to focusing on the simultaneous resistance and subjugation
of the families to the states order, I would like to underscore the relative homo-
geneity of these parents attitudes toward their childs sexuality and reproduction.
Indeed, the majority of the parents (thirteen of fifteen) do not angelicize or de-
sexualize their child (eleven of twelve), do not block their childs access to sexual
intercourse, and do associate the childs development and well-being with the
expression of his or her sexuality. The majority of them (fourteen of fifteen) do
also think that their child (eleven of twelve) will never be able to be a parent, that
they would be the actual parents of their childs offspring, and that sterilization is
a prerequisite for their childs well-being and sexual blossoming. Overall, the few
variations among the parents that were observed were related not to their childs
gender but to his or her age, his or her assumed impairment, or to the parents
ideological affiliations.
adaPted Sexuality and SCale model world
The access to genital sexuality and coitus represents a major breakthrough in

the sexual life of individuals labeled intellectually disabled. Nevertheless, as out-
lined above, the sexuality of these twelve adolescents and young adults is still
abnormal (i.e., distinct from the sexuality of the majority of the population) be-
cause it is subjected to a series of extraordinary requirements, sterility among
the most important. This raises a series of questions that the data presented in
this chapter do not answer. In the first instance, we do not yet know the reach
of this new extraordinary sexuality and of this new form of cloaked imposed
sterilization. Are they specific to the greater Montreal area, or are they spread
across all of the province of Quebec? Within the population of Montreal, are
only a few families, or the majority of them, affected? Are they specific to the
French-speaking families, or are they in vogue among all the linguistic, reli-
gious, and cultural communities? More broadly, are they spread across Canada,
the United States, or even the rest of the Western world, or are they specific to
Quebec? For instance, Alain Giami observes the rising popularity of steriliza-
tion in France as a pathway to sexual intercourse for people with intellectual dis-
abilities (283). However, Giami does not mention if the symbolic reversal that
we have observed in Quebec is also present in France. In the same vein, is the
gender uniformity found in this research specific to this sample of parents, or
can it be generalized on a broader scale? On another level, we also do not know
how the people labeled intellectually disabled actually react to this new excep-
tional sexualityor, in line with the normalization vocabulary, to this adapted
sexuality. Do they enjoy it and cherish it, or do they feel alienated from parent-
hood? Are males and females affected in the same way by the sacrifice of their
fertility? And how will they experience their infertility ten or fifteen years from
now, when they will be thirty or thirty-five years old? To address these numer-
ous questions, new research should be initiated in forthcoming years that will
look, on the one hand, at the dissemination of this new extraordinary sexu-
ality across societies, regions, social classes, religions, languages, and cultural
belongings, and, on the other hand, at intellectually disabled adults experiences
of sterilization over time. This information wont be sufficient, however, to deter-
mine what we should think of this veiled form of forced sterilization, of this
disguised new extraordinary sexuality, of this theater of free choice, which
facilitates the familys control of their childs fertility and partially dehumanizes
him or her by constructing him or her as Other. Nor will it tell us what we should
do about these family practices: we should tolerate them or eradicate them?
Once again, more research will be needed if we hope to provide answers to these
questions. These future research endeavors will first need to establish whether
the parents imposed prohibition on their childrens reproduction is detrimental
or beneficial to these young adults.
In this respect, the results of some of my previous research suggest that the
parents practices cannot be judged without regard to the global social context
(Desjardins, Jardin 222). This research observed, for a period of twenty-four
months, the world of seventeen adults labeled intellectually disabled who were
engaged in rehabilitation programs based on the principles of normalization, de-
signed to initiate them to normal life and to integrate them within global society.
The world of these individuals presented four main characteristics: despite their
integration into the urban fabric, they were still living in a parallel community
made up of the users of the rehabilitation center; the adapted places within which
they lived were small-scale replicas of common places; within these enclaves they
mimicked, as best they could, the ways and customs of the majority of the popu-
lation; and their transition from otherness to normality, within the confines of

these veiled margins, will never end. Taken in their entirety, these simulacra and
mimicries form a palace of signs that hides the otherness of these individu-
als and their exclusion from society behind the signifiers of normality. In other
words, these individuals are enclosed in margins where they are taught not to be-
come regular members of society, as declared in the official discourse, but rather
shadows or doubles, that is, stylized images of ordinary people. The new
extraordinary sexuality that the present chapter describes fits perfectly with that
world of images, pretence, simulacra, and shadows, which is also the world
within which these young adults will live once they will leave the family home.
Like this scale model world, this imposed sterile sexuality is a miniature,
too, that is, a scale model, an adapted version or a simulacrum of the sexuality
of ordinary people, as it is nowadays socially constructed. The body, the self,
and the world of people labeled intellectually disabled are thus not isolated units,
independent of one another, but parts of a unified whole produced by a series
of institutions that areas suggested notably by Michel Foucault in his theory
of power (Volont 132)partly autonomous and partly interdependent, as well
as partly contradictory and partly complementary. Indeed, as soon as we shift
our attention from the ideologies, the values, the laws, and the policies of mod-
ern society to its actual practices, the contradiction between family and society,
between individual parents and the state, vanishes, giving way to concordance,
symmetry, and continuity. It is as if the parents resisted societys official dis-
coursenotice, as stated above, that they do it not by creating a counterdiscourse
but by twisting, through underground tactical moves, the official discourse from
its initial purpose (de Certeau 37)only in order, ironically and paradoxically,
to better adapt to its actual discriminatory practices.6 Therefore, if we want to
eradicate the forced sterilization of people labeled intellectually disabled, we will
have to change not only the familys practices, attitudes, or beliefs but also the
actual world that modern society has developed for them, namely the world of
shadows (Desjardins, Jardin 187). This involves ultimately changing these as-
pects of our social, economic, and symbolic order that make this scale model
worldor, if you prefer, this veiled marginnecessary in present-day society.
These aspects include notably our obsession for academic success, individual au-
tonomy, competitiveness, and profitability, as well as our intolerance toward un-
productive or dependent beings. These factors all continue to justify the confine-
ment of people labeled intellectually disabled into veiled parallel worlds within
contemporary society.
noteS
This research project has been funded by the Conseil qubcois de la recherche sociale,
the Centre de Recherche ciRAde and the research group Girafe-cRiR. In addition, I
would like to thank Shannon Ellis, James Waldram, Raissa Graumans, and Robert Mc-
Ruer for linguistic revision and critical advice. Translations of French-language texts
and interviews used in the text are mine.
1. I have decided to group under the figures of seraphim and Mephistopheles the
representations of people labeled intellectually disabled. These refer respectively to
individuals putative lack of sexuality and vulnerability or to their supposed excess of
sexuality and ominous libido. Many different images are used in the literature to evoke
these two traits: for seraphim, angel, saint, shamanic healer, perpetual child, heroic
Cinderella, and others (Block 241; Giami, Humbert-Viveret, and Laval 103); for Meph-
istopheles, beast, demonic succubae, libidinous savage, concupiscent primitive, and
others (Block 245; Dupras, Sexualit 187; Edgerton 97; Kempton and Kahn 107).
2. See also Giami, Humbert-Viveret, and Laval 187; Dupras, Sexualit 189; Nuss v.
3. See Giami, Humbert-Viveret, and Laval 47; Block 247; Dupras Dsexualisation
47 and Strilisation 909.
4. A star group is the one with which a person identifies most deeply and in which
he finds fulfillment of his major social and personal strivings or desires . . . It is in ones
star group that one looks most for love, recognition, prestige, office, and other tangible
and intangible benefits and rewards (Turner 69).
5. Three parents also add a fourth sexuality to the three previous ones: the sexuality
of Mephistopheles, which is associated with illicit or invasive sexual behaviors. How-
ever, they connect these not to their childrens intellectual disabilities but rather to
serious mental health problems or to major communication disorders. They hope that
their children will learn to control disruptive aspects of their sexuality and appropri-
ately express genital sexuality in the future.
6. This skillful and cunning use of the law and bioethics procedure, by the parents,
presents the typical features of tactics, as defined by de Certeau: A tactic is a calcu-
lated action determined by the absence of a proper locus. . . . The space of a tactic is the
space of the other. Thus it must play on and with a terrain imposed on it and organized
by the law of a foreign power. It does not have the means to keep to itself, at a distance,
in a position of withdrawal, foresight, and self-collection: it is a maneuver within the
enemys field of vision, as von Blow put it, and within enemy territory. . . . It is a guile-
ful ruse. In short, a tactic is an art of the weak (3637). In other words, de Certeau calls
tactic the invisible and silent micro-resistances people use to adapt the cultural forms
imposed by a dominant order to their own ends, which is precisely what the parents do
with the law and the bioethics committee.

II
HiStorieS
4
Michelle jaRMan
diSmembering tHe lynCH mob

intersecting narratives of disability, Race,
and sexual Menace
Late in September 2003, in the small town of Linden, Texas, four young white
men assaulted Billy Ray Johnson, a cognitively impaired African American man
who had lived within the community for over forty years. As a result of the at-
tack, Johnson sustained a brain hemorrhage that left him in a coma for a week,
and his injuries ultimately led to his confinement in a nursing home. Even pre-
sented with such stark and undeniable facts, jurors recommended suspended
sentences and probation for his assailants in lieu of jail time. Unsatisfied with the
jurys decisions, the judge imposed additional penalties, but ultimately none of
the men spent more than sixty days in jail. Johnsons beating and ensuing court
case generated national attention and was rightly condemned by family spokes-
persons, the nAAcP, and the media as a bleak reminder of enduring racial in-
justice in the region.1 Shifting the focus slightly from the undeniable racism in-
volved, I invoke this story to open a discussion of the complications inherent in
interpreting race with disabilitycomplications that, I argue in this chapter, are
inextricable from the deeply enmeshed histories of racist and ableist violence in
the United States. Focusing on the early twentieth century, this chapter closely
examines discourses surrounding white-on-black lynching and the eugenic cas-
tration of cognitively disabled men. I argue that these seemingly distinct histori-
cal practices are in actuality profoundly interconnected; in illuminating their
relationship to each other, I seek to demonstrate how reading race and disability
as interrelated, dynamic processes can inform our understanding of both past
and present violence.
Witnesses statements make it clear that the assault on Johnson was moti-
vated by racism and ableism. On September 27, John Owens, Dallas Stone, James
Hicks, and Christopher Amox picked Johnson up as he was walking along a road,
brought him to a rural party, plied him with liquor, and then taunted him to
dance and perform for their amusement. Witnesses said Johnson was subjected
to myriad racial slurs and harassed by threats that the kkk might come for
him. Johnsons cognitive impairment was also exploited for the crowds pleasure.
He was encouraged to reach into the fire to retrieve a burning log, apparently to
flaunt his difficulty in discerning between safe and dangerous acts. By the end
of the night, the abuse escalated; Amox hit Johnson so hard he was immediately
knocked out. The men then loaded him into their truck, drove him a few miles,
and threw Johnsons unconscious body on the ground next to a public dump, on
top of a nest of stinging fire ants. He was left there for hours, until Hicks called
the police to report seeing a man who had passed out on the ground (Witt,
Old South 18).
Local authorities used Johnsons disability to downplay the racial nature of
the attack against him. For example, Malcolm Bales, from the Cass County U.S.
attorneys office, stated: This was a bunch of guys who were mean-spirited and
cruel, and they abused a black man who was retarded. While admitting that
the offense was terrible, Bales didnt think it should give rise to a federal civil
rights case (Witt, Old South 18). Bales draws upon the widespread cultural
understanding of disability as personal misfortune in order to position the act
as a juvenile schoolyard taunting rather than a hate crime. That is, he attempts
to defuse what he sees as the more volatile, divisive, and political issue of race
by invoking the seemingly medical and individual issue of impairment. In this
rhetorical maneuver, he relies upon a shared, cross-racial tolerance of disability
prejudice to deflect accusations of racism.
Perhaps because this strategy has been effective, the media coverage and the
nAAcPs responses were couched primarily in racial terms. Johnsons disability
was portrayed as accentuating the cruelty of a racially motivated crime but was
not treated as itself affording a crucial lens of analysis. Lennard Davis makes a
similar observation about the brutal murder of James Byrd Jr., which occurred
90 Michelle Jarman
a few years earlier in Jasper, Texas. The conviction of two white supremacist co-
conspirators in 1999 marked the case as a racial hate crime, comparable to lynch-
ings in the early part of the twentieth century.2 Davis points out that while Byrds
racial identity was highly publicized, the fact that he was disabledarthritic and
prone to seizureswas hardly mentioned in the press (Bending 14546). Davis
reads this as evidence of widespread ableism in U.S. society and of an unwill-
ingness to seriously consider disability discrimination as embedded within or
connected to racially motivated attacks: Whenever race and disability come
together . . . ethnicity tends to be considered so much the stronger category
that disability disappears altogether (Bending 147). Daviss point about media
inattention to disability oppression is important. Yet his assertionwhich entails
a hierarchical rather than an intersectional analysis of race and disabilityis
complicated by the media coverage of the attack against Johnson, whose cogni-
tive impairment, rather than disappearing, has been repeatedly invoked. This
invoking, however, has not referenced questions about how his disability con-
tributed to his being targeted, or how the assault against him connects to a long
history of violence against people with disabilities. As a result, the public dis-
course around these events has been truncated and one-dimensional.
In an effort to contribute to a more multidimensional approach, I argue for
the importance of reading disability and race togethernot as equal or com-
peting, but as dynamic social and discursive processes that inform each other.
In doing so, I propose that both the nature of the attack on Johnson and the
interpretations surrounding it gesture back to historical narratives interweav-
ing race, disability, and masculinity. Investigating these nodes of cultural mean-
ing, I turn to the early decades of the twentieth century to look at two specific,
racially charged, and disability-saturated cultural narratives: those surrounding
racialized lynching and eugenic sterilization. To illuminate these rhetorical re-
lationships, I read historic practices against literary figurations, paying particular
attention to representations, in William Faulkners The Sound and the Fury and
Zora Neale Hurstons Seraph on the Suwanee, of the presumed sexual threat of
cognitively disabled men during this time period. These representations, I argue,
support and are supported by the eras racist discourses around lynching.
Dismembering the Lynch Mob 91

HiStoriCal narrativeS of diSability,
raCe, and menaCing maSCulinitieS
In the early decades of the twentieth century, white apologists for racial violence
invoked the sexual threat of a mythic black rapist to justify and normalize the
brutal torture, murder, and bodily destruction that came to define white-on-
black lynching.3 During this same period, eugenicists constructed cognitively
disabled men as social menaces and sexual predators. Increased media atten-
tion to this putatively growing sexual threat (assumed to be directed against
the sanctity of white womanhood) worked to promote public acceptance of in-
stitutionalization, surgical castration, and sterilization. Although the ritualized
violence of lynching differed in form and overt purpose from the institutional-
ized violence of surgical sterilization, the intertwining narratives of rape and the
extreme corporeal punishments enacted upon black and disabled bodies share
important similarities. I suggest that even as racist mob violence and surgical
sterilization followed distinct historical trajectories, the ubiquitous presence of
lynching in the public imagination during the period from 1890 to 1940 may have
informed and helped naturalize the rationale used to support medical castration
and asexualization. Conversely, eugenic narratives of pervasive and uncontrol-
lable sexual deviance among feebleminded classes likely bolstered the cultures
conflation of sexual perversion with the highly racialized category of cognitive
inferiority, providing scientific language to describe the sexual deviance and
purported aggression of African American males.
In her compelling study connecting the histories of sexuality and race, Sio-
bhan Somerville argues that the rhetorical formations of whiteness and black-
ness in the early twentieth century were deeply intertwined with emerging
conceptualizations of homosexuality. Her work resists making simple analogies
between sexual orientation and racial identity, instead focusing on how these
discourses had varying degrees of power to shape cultural understandings of
bodies during this period (9). While Somerville is cautious about equating these
discursive practices, her analysis demonstrates that the emerging field of sex-
ology was deeply underwritten by racist discourse and in turn illustrates the ways
in which nonnormative sexualities were racialized. In a similar vein, I suggest
that although the discourses of race and disability were distinct, they functioned
fluidly and were often employed to undergird one another. Eugenics, of course,
has been widely recognized and critiqued as a racialized and racist discourse, as
well as an ableist one. Examining the racism and ableism of eugenics together
92 Michelle Jarman
makes it possible to glimpse some of the ways in which the discourse of race was
intensified by a growing intolerance toward disability during this era.
While the manifestations of disability and race oppression differed signifi-
cantly during the era I am discussing, they are governed by a shared political
logic. In her book Sapphic Slashers: Sex, Violence, and American Modernity, Lisa
Duggans juxtaposition of lynching narratives at the turn of the twentieth cen-
tury with a highly publicized lesbian love murder in Memphis provides an inter-
esting methodological frame for the link I am developing between eugenic nar-
ratives of abnormal sexuality and the rape stories used to mobilize racist mob
violence. Duggan suggests that the melodramatic public discourse around the
black rapist and the homicidal lesbian positioned these nonnormative subjects
as particular threats to white masculinity and the sanctity of the white middle-
class home. Duggans intent is not to imply equivalence between the (rare) les-
bian love murder and (all-too-common) racialized lynching as social practices,
but rather to explore how the historical linking of interracial and homosexual
sexuality with violence effectively controlled public discourse. As Duggan states,
narrative technologies of sex and violence have been deployed to privatize and
marginalize populations, political projects, and cultural concerns in the United
States, promoting the substitution of moral pedagogy for public debate (3).
She points out that both narratives constructed an erotic triangle of power in
which either the black rapist or lesbian lover disrupted both white patriarchy and
the normative white heterosexual union. Like Duggans lesbian murderess, the
black rapist and the sexually aggressive moron represented tangible threats
to the sanctity of white domesticity. White men, through their control of new
media, the legal system, and cultural justifications of lynching, cast themselves as
chivalrous heroes who rescued their women and families by eliminating these
menaces.4
The schema of the love triangle, which Duggan utilizes in her analysis, is
also useful in developing the connections between eugenic and lynching nar-
ratives. The importance of the black rapist as the villain of the lynching story,
while widely acknowledged as a white cultural fantasy, cannot be overstated.
As the historian Jonathan Markovitz states, Rape was such an integral part of
white southerners common sense understanding of lynching narratives . . . that
it hardly needed to be stated explicitly (10). In other words, the enactment of
lynching implied an interracial rape, and the rape of a white woman by a black
man was considered so heinous a crime that anything less than lynching would
have been too mild. This imagined violation of white women also provided jus-

tification for white men to blatantly exceed their own laws. In a widely quoted
defense of lynching, the governor of South Carolina, Ben Tillman, explained that
preserving white femininity made violence a moral imperative:
The white women of the South are in a state of siege . . . some lurking
demon who has watched for the opportunity seizes her; she is choked or
beaten into insensibility and ravished, her body prostituted, her purity de-
stroyed. . . . Shall men . . . demand for [the demon] the right to have a fair
trial and be punished in the regular course of justice? So far as I am con-
cerned he has put himself outside the pale of the law. . . . Civilization peels
off us . . . and we revert to the original savage type whose impulse . . . has
always been to kill! Kill! Kill! (qtd. in Markovitz 182)
The cultural power of this narrative to incite violence was clearly demon-
strated by the staggering number of lynchings carried out during this period.
From 1882 to 1930, the years when historians agree the best records were kept,
at least 3,220 African American men, women, and children were murdered by
lynch mobs.5 Although less than one fourth of the lynchings of African Ameri-
can men were in response to official charges of sexual assault (most of which
were false accusations), the connection of lynching with sexual transgression
was assumed. Already labeled as demon rapists, black male victims of lynch
mobs became public spectacles through the mutilation rites of lynching. These
protracted horrors often included being beaten or shot as well as all forms of
torture, including castration and the cutting and parceling out of body parts to
members of the crowd as souvenirs. This was followed by hanging or burning
or both. Historically, lynching has been mainly thought of as a regional terror,
a phenomenon largely isolated within the racial animosity of the South. Recent
scholarship, however, suggests that lynching and its supporting narratives were
integral to modern American cultural formation more generally.6 Examining
the ways these murders often became mass cultural events, Grace Elizabeth Hale
argues that spectacle lynchings were products of modernization (206). In the
years around the turn of the century, as white witnesses and participants began
to disseminate lynching stories, share photograph postcards and pamphlets, and
publicize upcoming mob executions in newspapers, the events themselves be-
came more ritualized, and their narratives took on standardized forms. As much
as the mob executions themselves, the proliferation of accounts and expansive
public participation functioned to normalize lynching as an expected, and even
justifiable, response to racial and sexual transgressions. In this way, each mob
94 Michelle Jarman
killing demonstrated and further secured the expansive regulatory reach and
oppressive power of the white majority.
Jacqueline Goldsby extends this idea by suggesting that lynching actually con-
tained a cultural logic very much aligned with broader national assertions of
primacy and strength in the modern era. She points out, however, that the ex-
treme violence of lynching has complicated the nations willingness to remem-
ber because lynchings violence was so unspeakably brutaland crucially, since
the lives and bodies of African American people were negligible concerns for the
country for so long a time. . . . [We] have disavowed lynchings normative relation
to modernisms history. Lynchings secrecy, Goldsby insists, is an historical
event (6). The unspeakable brutality made lynching both highly visible and im-
possible to claim. Even as white people witnessed lynchings viciousness, they
also rejected it as unbelievable, unreal, and, in Goldsbys terms, spectacular.
This concurrent cultural normalization and disavowal of lynching has blurred
its historical significance.
Goldsbys framing of lynching as a spectacular cultural secret enables an im-
portant historical reclamation. In addition to the extreme violence of lynching, I
would suggest that the racialized sexual threatthe myth of the demon rapist
has also been crucial to the collective forgetfulness about these murders. While
these staged executions were dramatically public events, the supposed sexual
attack precipitating the mobs response allowed each murder to maintain an ele-
ment of the private and individual. The rape narrative provided an essentially
unique crime to fit the violent response of the lynch mob. In addition, the sexu-
alization of the murder itselfespecially in the form of castrationreinscribed
the victim as sexual predator, regardless of the actual reasons behind his capture.
Robyn Wiegman suggests that the violent, ritualized castration enacted in
most lynchings underscored black mens threat to white masculine power (14).
As a disciplinary tool, castration was central to defining the power and power-
lessness among the participants in this cultural drama: that of the mythically
endowed rapist, the flower of civilization (the white woman) he intended to vio-
lently pluck, and the heroic interceptor (the white male) who would restore order
by thwarting the black phallic insurgence (93). Wiegman pays particular atten-
tion to the homoerotic dynamics among members of the white mob. Paradoxi-
cally, though, despite the charged physical intimacy inherent in ritualized cas-
tration, its more potent force seems to have been its reassertion of the primacy
of white heterosexuality. Moreover, the intimacy with the victims sexual organs
functioned in two additional but opposing directions: at once inscribing and ob-

jectifying the presumed excessive sexuality of the black male on a public scale,
castration also rendered the rite personal and private. This public and private
function of castration mirrors what Goldsby refers to as lynchings secrecy and
adds to the complicated nature of this violent history.
Against this public and private dynamic of the sexual violence of lynching and
its adherent cultural narrative, I want to consider the contemporaneous emer-
gence of surgical castration as a eugenic strategy to control and sexually punish
cognitively impaired men. I focus primarily upon the public rhetoric construct-
ing previously unmarked white male bodies as sexually deviant. While African
American men were sterilized during this period, they were often caught up in
different systems of control. In the South, for example, institutions devoted to the
care and training of feebleminded individuals were strictly segregated, so Afri-
can Americans with cognitive disabilities were housed in mental institutions,
imprisoned, or left with families (Noll 98103). The segregated nature of institu-
tions was mirrored by racially distinct discursive practices. Institutional direc-
tors spent little time justifying treatment of African American inmates (which
was invariably inferior to that of whites), but they did feel compelled to rational-
ize surgical castration and sterilization of white boys and men in their care.
Preoccupied with preserving the sanctity and strength of the white race,
leading eugenicists stressed the importance of controlling the reproduction and
sexuality of feebleminded people. They defined broad categories of inadequate
classesin addition to designations based upon physical impairments and dis-
easein terms of sexual promiscuity, excessive appetites, and prodigious repro-
duction. Walter Fernald, a leading eugenicist, argued that controlling the sexual
impulses of such people should be of the highest priority: Perhaps the chief
function of these classes in America has been to demonstrate that the commu-
nity is not the place for an adult imbecile . . . an adult human being, with the mind
of a child and the body and passion of an adult, is a foreign body in any com-
munity (416). Nonconforming sexuality functioned as a foundational indicator
of otherness and was deployed by eugenicists to secure the publics approval of
medical regulation and confinement.
In the United States, the first law permitting sterilization went into effect in
Indiana in 1907; by 1921 fifteen states had laws on their books. Even before the
turn of the century, arguments favoring eugenic and punitive castration were
common. In 1894 a large public debate was instigated when Dr. Hoyt Pilcher,
superintendent of the Asylum for Idiots and Feebleminded Youths in Winfield,
96 Michelle Jarman
Kansas, admitted to castrating forty-four boys in his institution. While Pilcher
was publicly rebuked and removed from his position, many doctors and lead-
ing eugenicists came to his defense, and he was ultimately reinstated (Reilly 29).
During this period, even though castration and sterilization were not legal, many
institutional leaders took it upon themselves to pioneer such eugenic controls.
Much as white lynch mobs asserted their racial privilege against African Ameri-
cans, some administrators used their institutional power to move fluidly outside
legal confines to enact what they perceived as correct and correctional measures
upon the bodies entrusted to their care.
As states began enacting eugenic laws during the first decades of the twen-
tieth century, much of the support for surgical sterilization continued to come
directly from superintendents, many of whom were doctors. Martin Barr, the
chief physician at the Pennsylvania Training School for Feeble-minded Children
in the 1920s, was one such vocal enthusiast of sterilization. Personally I prefer
castration for the male . . . as insuring security beyond a peradventure, he stated
plainly. Making a small concession to those who might consider castration to be
extreme, he went on to add, if for sentimental reasons the removal of the organs
are objected to, vasectomy . . . may be substituted (234). Medical professionals
cavalier attitudes toward massive surgical procedures did much to normalize
the idea of medically regulating disabled bodies. In addition, continued public
support was elicited through the promulgation of the idea that adult men with
disabilities were unpredictable, foreign, and sexually dangerous.
faulknerS eugeniC villain (and viCtim)
To look more closely at the potency of this eugenically constructed predator,

my analysis turns to literary representations of disability. Specifically, I consider
how the characterizations of disabled white men seem informed not only by
deterministic assumptions of sexual deviance but also by the racially inflected
hypersexuality attributed to the purported villains (and inevitable victims) of
lynching narratives. In order to better imagine the social mindset behind eu-
genic sterilization, I discuss Benjamin Compsons castration in The Sound and
the Fury. Through Benjys gelding in response to his supposed attack of a neigh-
bor girl (263), Faulkner depicts social acceptance of eugenic thinking among the
residents of Jefferson, Mississippi. After his beloved sister Caddy is exiled from
the family compound, Benjy continues his daily ritual of lingering at the gate to

watch the girls returning from schoolin a timeless anticipation of her return.
One fateful day, the gate is left open, allowing Benjy to venture from the confines
of the yard and (presumably) to sexually attack a neighbor girl. Witnessing the
event (or in response to the girls cries), her father, Mr. Burgess, assails Benjy. The
ultimate punishment for this transgression is Benjys rapid removal to a hospital
to be surgically castrated.
Faulkner provides the details of this event from two differing points of view,
that of Benjy and that of his brother Jason. Benjys stream-of-consciousness
narrative portrays a series of miscommunications rather than a directed attack.
His memories suggest nonthreatening motivations: I opened the gate and they
stopped, turning. I was trying to say, and I caught her, trying to say, and she
screamed and I was trying to say (53). From this point of view, Faulkners novel
suggests that Benjys attack was an attempt to reach out to people beyond the
parameters of his yard. On the other side, Jason might be seen as the narrative
embodiment of the eugenic mindset that supports stigmatizing interpretations
of cognitive impairment and compels the family to pursue castration in response
to Benjys transgression. Jason admits that Benjy didnt know what he had been
trying to do (263), but he also reads the incident deterministicallyas the in-
evitable outcome of Benjys disability: This family is bad enough, God knows.
I could have told you, all the time (52). The Compsons understand that Benjy
crossed a moral line that must be restored; something drastic must be done
to reestablish Benjys docility within the neighborhood. Internalizing a eugenic
perspective, Jason believes that if they dont institutionalize Benjy, which his par-
ents refuse to do, they must do something decisivesomething permanentto
assure their neighbors that such an attack will never happen again.
These contrasting perspectives within The Sound and the Fury demonstrate
how vulnerable a nonlingual, cognitively impaired man is to the interpretations
of others. The truth of Benjys intentions and actions are determined externally
and inscribed upon his body, in this case surgically. His script is written by those
observing him, judging him from a standard by which he has already been coded
deviant, sexual, and dangerous. When Benjys family and neighbors witness an
eighteen-year-old idiot (the scientific term used during this period) approach
and touch a schoolgirl outside of his fence, one interpretation, that he is a sexual
menace, presents itself as the natural, and only, conclusion. As Fernalds asser-
tion that the community is not the place for an adult imbecile makes clear, there
was no socially acceptable place for a person like Benjy.
98 Michelle Jarman
Within Faulkners framework, Benjys castration takes place when he is eigh-
teen years old, in 1913. During this era, men with cognitive impairments similar
to those embodied by Benjy were highly vulnerable to surgical asexualization.
In his historical research on feeblemindedness, James Trent points out that
most sterilizations were castrations, and the majority were done on idiots and
low-grade imbeciles whose obscene habits were most bothersome to super-
intendents and their staff (195). Within this social and historical context, a fic-
tional figure such as Benjy already signaled to readers the potential danger of
transgressive sexuality. The eugenic rationale of surgery functions to guarantee
Benjys sexual complacency and at the same time to ensure his limited freedom
within the confines of his yard.
tHe SoCial menaCe of tHe moron
In the early part of the twentieth century, eugenicists pursued sterilization and
castration primarily to control the behavior and reproduction of people diag-
nosed as idiots or imbecilesthe scientific terms for those not expected to
advance beyond a mental age of seven years, many of whom were already con-
fined in institutions or sequestered in family homes. By the 1920s and 1930s,
however, as eugenicists became more concerned with moronsborderline
feebleminded individuals who could pass for normalthey began sounding
an alarm against the imminent sexual threat posed by these purported predators.
Again, untarnished white women were invoked as the targeted prey of deviant
and feebleminded men. Echoing the familiar rhetoric of the racialized mythic
rapist to underscore the sexual threat of morons, the female physician Isadore
Dyer stated, we ourselves . . . should try to establish or have enacted a law pro-
tecting our sisters and our descendants from the possibilities to which they have
been exposed (22).
In Chicago and other cities in the United States, numerous news articles re-
ported on the sexual crimes of morons, and new laws to confine and unsex
these supposed criminals were widely discussed. In his court testimony, the psy-
chologist David Rotman stressed the danger of letting such borderline individu-
als remain free and unsupervised: Often they seem innocent enough, but they
are responsible for a large percentage of our sex crimes. We will have no real
solution of the moron problem until our legislators recognize the potential peril
of these individuals (Urge 3). In stories supporting the push for tougher laws,

sexual crimes were graphically reported. In some cases, the perpetrators had
been diagnosed with cognitive impairments, but in many instances the nature of
the crimes themselvesspecifically sexual crimes against childrenwere used
by the media as conclusive evidence of the perpetrators intellectual incapacity.
Increasingly, sexual criminality was seen as synonymous with cognitive impair-
ment. For example, when the Illinois state representative Peter Granata intro-
duced a bill in the 1930s that would castrate anyone who committed a sexual
offense against a boy or girl under the age of sixteen, media coverage consis-
tently referred to the proposed legislation as the bill to unsex morons (Bill 1).
Returning to the intersections between narratives surrounding white-on-
black lynching and those authorizing eugenic castration, I suggest that the ex-
cesses of lynchingthe spectacularization of murders as cultural events, the
barbaric mutilation, and communal participationserved a contrastive func-
tion to eugenic methods, rendering their purportedly scientific rhetoric and
medicalized violence seemingly more benign. In addition, lynching and surgical
castration had in common an ambiguous legal status. Although mob lynchings
were conducted arrogantly outside the law, the repetition, public acceptance, and
widespread participation in white-on-black violence allowed lynching to func-
tion as a sanctioned cultural practice. In fact, the extralegal nature of lynching
demonstrated to its victims that the boundaries of the law were quite permeable
along the racial divide, as the practice persisted, usually with full participation or
complicity of judges, sheriffs, and local officials.7 Sterilization and medical cas-
tration, by contrast, because they were most often enacted by white doctors upon
white inmates (and often rhetorically situated as an intraracial problem) during
this period, needed to be integrated into the rationality of law. Thus, while un-
told numbers of sterilizations were carried out behind institution walls, medical
professionals used these illegal operations as evidence to build public acceptance
and provide arguments for changing policy. At first officially outside the law, but
ultimately either incorporated within it (surgical castration) or supported by
legal authorities (lynching), each of these two modes of sexualized violencethe
spectacularized, ritual castration and murder of African American men, and the
more quietly conducted, scientifically rationalized castration and sterilization of
cognitively disabled menlikely had the effect of normalizing and legitimizing
the other. Certainly, each responded to what can be interpreted as the same cul-
turally produced fear: that of a threat, animalistic and sexual, to the sanctity of
normative white heterosexualitya threat whose extremity necessitated drastic
and violent responses.
100 Michelle Jarman

HurStonS reSCriPting of tHe lynCHing narrative
In the 1930s and 1940s, the public proliferation of accounts featuring the threat
of morons appears to have seemed more credible to some than the equally
frequent invocations of the mythic racialized rapist. Zora Neale Hurstons final
novel, Seraph on the Suwanee, replaces the latter of these figures with the former,
rewriting the familiar lynching narrative so as to feature a white disabled vil-
lain. Published in 1948 but set in the early decades of the 1900s, Seraph traces
nearly twenty-five years of marriage between Jim and Arvay Meserve, a hard-
working white couple living on the edges of the Florida swamplands. Until re-
cently, many critics had dismissed Seraph as an abandonment of Hurstons rich
black folk tradition,8 but over the last decade, several scholars have demonstrated
that although the plot revolves around an insecure white woman and her domi-
neering husband, Hurstons novel nonetheless develops complex social, racial,
and gendered critiques.9 Yet although disability looms large within the novel,
driving much of the marital conflict, critics have, in keeping with Seraphs own
governing assumptions, tended to treat disability as a problem to be solved or,
more specifically, as a domestic disruption the family must extirpate in order to
achieve normative harmony. In closely examining representations of disability
in Hurstons novel, I seek to underscore the tacit eugenic narrative at play in
the text.
Situated centrally in the novel is Earl, the eldest son of Arvay and Jim, who is
born with an unspecified cognitive impairment and minor physical disabilities.
Earl seems to possess a violent and uncontrollable nature. As a baby, he demon-
strates an unnatural appetite, ferociously attacking his mothers breast (68).
As a toddler, he becomes unrecognizable to Arvay when he emits animal howls
in response to losing a piece of fruit (100). His atavistic naturea loose desig-
nation common in eugenic and racist rhetoricportends his ultimate crime.
Years later, Earl sexually assaults the teenage daughter of their neighbor, an act
for which he is spectacularly hunted down and killed. In ways that exceed those
of Benjy Compsons castration, Earls murder becomes reminiscent of a lynch-
ing narrative. This parallel is troubling, given Seraphs apparent endorsement
of Earls death. The novel depicts the murder as unavoidable and as a necessary
sacrifice that solidifies the survival and growth of his parents marriage. Thus,
Hurstons novel can be read as strategically deploying the sexual threat of a dis-
abled figure in order to displace the figure of the mythic black rapist as the villain
of the lynching story. More important, although the novel calls attention to the

lynching narrative, its deployment of the eugenic threat as the basis of an alter-
native script obscures the ways in which these cultural narratives bolster each
other.
Hurstons representation of Earl reiterates eugenically inflected stereotypes
tying cognitive and physical impairment to immorality, animalistic impulses,
violence, and criminality. It is therefore not surprising that Earls sexual awaken-
ing takes the form of an animalistic frenzy. When he is nearly sixteen, one of
his fathers friends, Alfredo Corregio, moves his family into the cabin behind
the Meserve home. The Corregios have two daughters, the eldest of whom
the teenage Lucy Annimmediately becomes an obsession to Earl. Recogniz-
ing the danger Earl suddenly represents, Jim and Arvay attempt to confine him
to the house. Predictably, these efforts fail, and within weeks Earl executes his
escape. Pretending to go to sleep after dinner, he cuts a hole in his screened win-
dow and slips out. Sitting at her sewing after dinner, Arvay is startled by shrieks
mixed in with howl[s] and yelps coming from the grove (142). She immedi-
ately recognizes Earls animal-like cries and runs toward the cottage to join a
group crowded around Lucy Ann, who lies unconscious on the ground. Blood
was running down from a mangly spot on the side of her neck, Arvay observes.
The fingers of the white hand that lay limply across her body were chewed and
bloody. The girls skirt was torn and pulled up to reveal a bleeding wound on
one thigh (143). Judging from her wounds, which seem more animalistic than
sexual, Lucy Ann looks as if she had been attacked by a wild creature, not a
young man.
The novels representation of disability as animalistic reinstates determinis-
tic rhetoric established by eugenicists in the early part of the century. Barr, the
influential physician supporter of surgical sterilization quoted earlier, expressed
the common eugenicist belief: What is not fully recognized is the fact that men-
tal defectives suffer not only from exaggerated sexual impulses, but from mental
and moral debility . . . leaving them greater slaves to the impulse of the moment
(232). Seraph reifies these cultural assumptions in its depiction of Earl, who is
portrayed as incapable of reigning in his destructive impulses. This is under-
scored when Earl turns upon his mother, who has been his lone defender. When
Arvay discovers Earl hiding in the house, he attacks her: The weak fingers feel-
ing for her throat . . . the intent was here, only the strength was lacking (148).
Even this threat upon her own life fails to fracture Arvays motherly devotion,
which the novel depicts as misguided: Arvay urges Earl to run from the posse of
men forming outside.
102 Michelle Jarman

By establishing Earl as an undisputed sexual deviant, Hurstons novel dis-
places the mythic black rapist as the villain of the lynching narrative. Instead, it
seems to suggest that some disabled white men should rightly be understood as
very real threats to women of all races. The efficacy of this reversal depends upon
the very similar ways in which these two figures have been narrativized. In other
words, the novels counternarrative calls attention to the parallel ways African
American and cognitively impaired men were discursively produced as sexual
predators in the early twentieth century. However, in its exposure of the racial-
ized rape narrative as false, the novel has the effect of reinscribing the imagined
sexual threat attributed to cognitively disabled men. This is a key and troubling
point for two reasons: first, in order to challenge a racist cultural narrative, Ser-
aph constructs cognitively disabled men as dangerous; second, even as the novel
relies upon the similarity of these narratives, its textual displacement opposes
and disconnects these two deeply imbricated figures.10
My intention is not to detract from Seraphs critique of white- black
lynching but rather to investigate the ramifications of deploying ableist on-narra-
tive strategies as a means of counteracting racist practices. Such deployments,
in foreclosing possibilities of reading racist and ableist narratives in conversa-
tion, obscure the ways in which eugenic discourses and rationales for racialized
lynching may historically have lent support to each other. The interconnected-
ness of racist and ableist cultural assumptions is evident in the scene in which
Earl leads his trackers into the depths of the swamp. Seemingly to trope upon
the historic racism in evolutionary science, Seraphs representation of Earls re-
treat to the swamp, a murky home to earlier forms of life, marks him as atavistic.
After hunting for Earl all night, the posse goes to Joe Kelseys house to see if he
has taken refuge there; it is Joe, Jims African American overseer, who suggests
they look in the Big Swamp somewhere (149). Joe assures the men that he has
seen Earl ducking and dodging down in there . . . too many times (149). By
using an African American character to point the white men in the right direc-
tion, Hurstons novel hints at a connectedness between the marginalization of
blackness and disability.
This is not, however, to suggest that racism and ableism function in identical
ways. For one thing, the posse hunting for Earl seems civilized in comparison to
lynch mobs. By the 1940s, the extraordinary brutality and violence of lynching
were well known, and so the contrast between a lynching and the tracking of Earl
would have been striking to Hurstons readers. It is also worth noting that this
manhunt is led by Earls fathera detail that brings to the surface another crucial

difference between race and disability. In contrast to racial violence, which func-
tioned to control whole communities of African Americans, regulation of people
with disabilities often involved the active participation of family members. In an
effort to keep the group of men from hurting Earl, Jim leads the search into the
swamp, knowing if it wasnt for [his] presence, they would have killed Earl a
long time ago (153). For hours, Jim begs him from a distance to relinquish his
rifle and give himself up. Earl not only ignores his pleas but threatens his fathers
life: seeing his father where he had no chance of escape, [Earl] advanced to get
Jim exactly under his gun-sight again (153). Witnessing Jim helpless in front of
his son, the men fire on Earl, killing him instantly.
While the events leading up to Earls killing echo the rape narratives asso-
ciated with lynching, Earl is not tortured or mutilated as lynching victims were.
His death thus stands in contrast to the barbaric violence of lynching. This seem-
ing restraint of violence in the novel, like the scientific rationalization of surgical
castration, may have been instrumental in procuring the familial acceptance of
such measures that was crucial to their success. As Jim says to Arvay: You ought
to be able to see how they wouldnt want nobody like Earl loose on the commu-
nity (148). In participating in Earls removal, Jim validates the eugenic solution
to disability: death or incarceration.
ConCluSion
In considering the eugenic constructions of the sexually menacing male in rela-

tion to the rape story that fueled white-on-black lynching, I have traced the ways
both discourses functioned within turn-of-the-century public discourses to sup-
port a reconsolidation of power in the white, heterosexual, nondisabled domestic
structure. These discourses, and the social practices they supported, demonstrate
some of the ways in which the promises of a more inclusive democracy initiated
in the postCivil War period were dramatically shut down and contained in the
early decades of the twentieth century. One of the reasons these sensationalized
stories proved to be so culturally salient is that they potently stigmatized non-
white, disabled, and sexualized bodies in ways that compelled a public response.
At the same time, however, because the victim was successfully positioned by
those in authority as the perpetrator or criminal, his or herif we remember
Duggans lesbian love murderpersonal fate (the violence enacted upon him
or her by the lynch mob, the court, or the surgeon) was strategically removed
from the political to the personal sphere. In other words, much as the spectacu-
104 Michelle Jarman

lar violence and sexualized backstory of lynching subverted the public nature of
the events, the deterministicand also sexualizeddiagnostics around disabled
men during this period tended to privatize the social, surgical, and institutional
controls enacted upon them.
Returning to contemporary manifestations of violence against African
American and disabled people, it is important to remember the historical narra-
tives informing such acts. The turn-of-the-century period is particularly relevant
because in many ways, in the early decades of a new century, we find ourselves
in a somewhat analogous political milieuone in which the promises of femi-
nism, civil rights, gay liberation, and disability rights continue to be curtailed
and contained in various ways. However, these libratory social movements have
succeeded in engendering widespread intolerance to violence that was common-
place in an earlier era. The jurors in Johnsons civil case against his attackers, for
example, sent a clear message that such targeted violence would not be toler-
ated, awarding Johnson nine million dollars in damages (Witt, $9 Million 3).
At the same time, however, apologists for Johnsons white assailants cited the
brutality of lynchings as evidence of the comparative innocuousness of John-
sons attack. These arguments are disingenuous, of course. Moreover, the men
who attacked Johnson were motivated by both racism and ableism. Not only
did his cognitive disability contribute to his being targeted for abuse but the
attack produced more impairments, resulting in his permanent incarceration in
a nursing home. This makes evident the continued inextricability in contempo-
rary U.S. culture of racially motivated and ableist violence. The violence enacted
against Johnson should be understood as the legacy of intersecting discourses
that underwrote both lynch mob violence and surgical castration in the early
twentieth century: while the brutality of his attackers actions echoes and per-
petuates a history of spectacularized public violence against African American
people, Johnsons incarceration in an institution is also a form of violenceone
that shares much with the privatizing discourses of eugenic science that ratio-
nalized and promoted the castration of cognitively disabled men. Indeed, much
as early twentieth-century doctors represented castration, sterilization, or per-
manent confinement of disabled people as compassionate treatments, some con-
temporary commentators have interpreted Johnsons confinement as beneficial
to him. As one supporter of the defendants stated, [Johnson] is better off today
than hes ever been in his life (Witt, Old South 18). Locking Billy Ray Johnson
up in a nursing home outside of town may allow the locals the luxury of forget-
ting his story, but as the legacies of lynching, surgical sterilization, and cultural

violence remind us, distorting memories of these oppressive and intersecting
rhetorical strategies prevents us from condemning ableism and racism as inter-
acting processes, and this is certainly a luxury we cannot afford.
noteS
Many thanks to Lennard Davis, David Mitchell, and Sharon Snyder for helping me
begin to think through these issues during my dissertation research. I am especially
grateful to Robert McRuer and Anna Mollow for their invaluable insights during the
many stages of revision of this chapter. I would also like to express my gratitude to the
anonymous reviewers for their helpful comments. Finally, I want to acknowledge and
remember my dear friend, Chris Bell, whose legacy continues to encourage and inform
my work on race and disability.
1. As reported by Howard Witt, Johnsons family members, with the legal and finan-
cial support of the nAAcP, are pursuing the case as a racial hate crime. The Fbi has been
brought in to determine whether Johnsons attack should be classified as such; their
investigation is ongoing.
2. James Byrd Jr. was kidnapped and brutally murdered by white supremacists
John William King and Lawrence Russell Brewer. These men chained Byrd to a truck,
dragged him for over two miles, and dismembered his body.
3. I use the term black rapist purposefully to call attention to the way this figure
was deployed historically to objectify, dehumanize, and stereotype African American
males.
4. The term moron was coined by eugenicists to refer to individuals who were cog-
nitively disabled but who could pass as nondisabled. As I discuss further, this ability
to pass became more and more troubling to eugenic reformers, and socially unaccept-
able sexual behavioramong women and menwas increasingly seen as evidence of
cognitive disability.
5. For more detailed information on lynching statistics, see Appendix C in Tol-
nay and Beck 27172. These figures summarize lynching from the Deep South and do
not include antiblack violence in other regions of the country. For limitations of these
numbers, see Appendix A in Tolnay and Beck 25963.
6. In addition to the invaluable records kept by the nAAcP and other antilynching
groups to document lynching in the United States, recent photographic collections and
publications have ushered in a renewed interest in this important history. The shocking
and powerful photographic collection compiled by James Allen and exhibited across
the country was also published in book form in 2000 under the same title, Without
Sanctuary: Lynching Photography in America. Anne Rices Witnessing Lynching, pub-
lished in 2003, is a careful selection of literary works, essays, and journal articles by
leading figures in the antilynching movement. Most recently, Christopher Waldreps
106 Michelle Jarman

Lynching in America constructs a fascinating history of lynching out of primary source
documents from the early 1800s through 1945.
7. Although lynching was never considered legal, the federal governments resis-
tance to actually criminalizing these acts as murder effectively provided amnesty to
lynch mobs. As Jacqueline Goldsby points out, each time antilynching legislation was
introducedin 1901, 1921, 1922, and 1934Congress rejected the bills, ostensibly to
protect states rights (1820).
8. Mary Helen Washington, for example, suggests that the novel fails because
Hurston abandons the wellspring of her unique estheticthe black cultural tradi-
tion (12). Alice Walker, who pioneered a revival of public interest in Hurstons work,
flatly rejects Seraph: [Hurstons] work, too, became reactionary, static, shockingly mis-
guided and timid. This is especially true of her last novel, Seraph on the Suwanee, which
is not even about black people, which is no crime, but is about white people who are
bores, which is (xvi).
9. Claudia Tate, for one, argues that Seraph on the Suwanee engages in a persistent
joke on white cultures fetishization of passive female desire (371). Janet St. Clair also
suggests that feminist dismissals of Hurstons protagonist too easily accept a superfi-
cial reading of Arvay as a passive, self-abnegating, and dependent wife, while failing
to acknowledge the subversive undertow at work in the feminist substory . . . [that
rejects] both oppression and, more important, the mental submission to oppression
(38). Although Seraphs resolution to the marital battles waged between Jim and Arvay
Meserve doesnt represent a straightforward feminist victory, it is true that, as Ann Du-
Cille points out, the novel does expose the sexual violence and oppression endemic to
heterosexual marriage.
10. For a provocative consideration of the ways in which historically situated
counternarratives are constructed to contest and rescript melodramatic dominant dis-
courses, often using but resignifying the same discursive material from the dominant
narrative, see Duggans discussion of the counternarratives to the lynching narrative
constructed in the journalism of Ida B. Wells (Sapphic 2022).

5
Rachel oconnell
tHat Cruel SPeCtaCle

the extraordinary body eroticized in lucas Malets
The History of Sir Richard Calmady
Sir riCHard CalmadyS extraordinary body
The History of Sir Richard Calmady (1901) is a book about the extraordinary body
of its eponymous protagonist.1 Sir Richard Calmady is afflicted by a curse, cast on
his family in the distant past by a mistreated peasant woman. The curse decrees
that all Calmady men will die young, until one is born, half angel, half mon-
ster, who will atone for the wrongs of his philandering forefathers (Malet 40).
Soon after the premature death of his own father, Richard is born with no lower
legs, his feet attached to his thighs just above where his knees would have been.
The novel focuses on Richards progress into adulthood, narrating his vari-
ous romances and his anxieties about his sexual and reproductive future. His
principal and most enduring romance is with his protective, passionate, and
compelling mother, Katherine, who refuses to acknowledge his bodily difference
openly. As a young man just out of university, however, he enters into an engage-
ment with his innocent and unimaginative neighbor, Lady Constance Quayle.
It is eventually revealed that Constance has been forced into the engagement by
her family, who are after Richards money, and that in fact she is, and has always
been, horrified by Richards body. She finally breaks off the engagement to marry
the athletic soldier Mr. Decies. Humiliated and embittered, Richard flees to the
continent to live the life of a libertine, embarking on a period of debauchery that
culminates in a steamy affair with his cousin, Helen, who has since childhood
been infatuated by his extraordinary physique. After one night of passion with
Helen, a chastened Richard returns to England, wracked by remorse and illness,
to live a life of temperance devoted to good works. At this point he enters into
a seemingly celibate marriage with his other cousin, Honoria, a protolesbian,
protofeminist character who wishes to contribute to Richards charitable endeav-
ors. Richard and Honoria adopt the child of a near relative, rather than having
their own children, and settle down to live happily ever after with Katherine, who
in fact appears to be the primary erotic object for both Richard and Honoria.
The novels sustained and explicit account of Richards sexual experiences and
desires renders it exceptional in the era of eugenics, during which the sexuality of
disabled people was a taboo subject. The book, therefore, like its protagonist, is a
fascinating anomaly. It was a bestseller in 1901, outsold only by Rudyard Kiplings
Kim. Its author, Lucas Malet, was a respected if controversial avant-garde writer,
the daughter of the Victorian cultural leader Charles Kingsley (her given name
was Mary St. Leger Kingsley). Both Kim and Malets novel dwell with covetous
fascination on boys on the brink of manhood, but while Kim has become a clas-
sic, The History of Sir Richard Calmady, despite its initial notoriety, drifted into
utter obscurity during the first half of the twentieth century. It was recovered
only recently, due to a renewed interest in the works of noncanonical Victorian
and Edwardian women writers. The contrasting fates of Kim and The History of
Sir Richard Calmady invite reflection on the ways in which the politics of canon-
icity intertwines with the politics not only of gender but also of disability.
The books rediscovery coincides opportunely with the continuing growth of
the academic field of disability studies, for which it offers thought-provoking ma-
terial. This novel deserves to be part of our developing disability studies canon;
yet it is hard to know what to do with it, for it manages to combine very inti-
mately the radical and the deeply offensive. It thematizes and draws on the con-
ventions of the freak show, describing Richards body in visual terms and posing
him in tableaux dripping with emotive significance, so that the novel as a whole
becomes a kind of textual stage upon which Richard is displayed as a freak. Yet
the novel dwells on Richards body with fascination, desire, and perhaps even
love. Richards body is its central object, the fine point upon which all its char-
acters, histories, and themes coalesce; at the same time the fantasies his body
arouses diffuse through the text like the fog that so often surrounds its charac-
That Cruel Spectacle 109

ters, infusing the imaginative world of the novel with an affect of melancholy,
yearning passion. This novels commitment to, its caress of, the disabled body is
a rarity in the field of representations of disability, at least until recent years.
The excessive presence and hypervisibility with which Richards body is in-
vested in this novel evokes Rosemarie Garland-Thomsons work on disability and
visual culture, as presented in her discussions of freak shows and photography.
In her essay, The Politics of Staring: Visual Rhetorics of Disability in Popular
Photography, Garland-Thomson observes that the history of disabled people
in the Western world is in part the history of being on display, of being visually
conspicuous while politically and socially erased (56). In Extraordinary Bodies,
her seminal book on freak shows and other cultural representations of visible
disability, she argues that the exhibited body became a text written in bold face
to be deciphered according to the needs and desires of onlookers (60). This
transformation of body into text deprives the freak of subjectivity and power:
the body envelops and obliterates the freaks potential humanity (59). Mean-
while, the audience, in the position of interpreter, is empowered to make use of
the freak as a generalized icon of corporeal and cultural otherness on which
all kinds of fantasies and disavowals can be imposed (80). In The Politics of
Staring, Garland-Thomson analyzes the ways in which photography of disabled
people draws on and develops from the freak show, offering opportunities to
stare at the extraordinary body in an era in which the freak show has become dis-
tasteful. Producing a powerful frame through which to approach visual images
of disabled bodies, she creates a set of four categories, or rhetorics, of images:
the wondrous, the sentimental, the exotic, and the realistic. She argues that while
the first three rhetorics evoke the distanced, privileged responses of amazement
(the wondrous), pity (the sentimental), and desire (the exotic), realistic repre-
sentations banish the strange and cultivate the ordinary, radically reimagining
disability by installing people with disabilities in the realm of human common-
ality (74).
Garland-Thomsons work is a force for the cultural emancipation of disabled
people, who have for generations been assaulted and objectified by the able-
bodied gaze, and an important aspect of her project appears to be a search for
potentially empowering modes of representation, such as the realistic mode in
photography. At the same time, Garland-Thomsons writing leaves hanging some
intriguing loose ends and evocative asides, which open up the possibility of ex-
ploring in detail the diverse and particular relationships that objectifying modes
of representation foster between onlooker and spectacle. For example, although
110 Rachel OConnell

Garland-Thomson argues that the able-bodied gaze subjects and objectifies the
disabled body, her description of the visual relation as an awkward partner-
ship that estranges and discomforts both viewer and viewed destabilizes this
paradigm, suggesting a connection in which both parties are vulnerable (Poli-
tics 57). In addition, she offers a thought-provoking conception of the freak
show: At the freak show, cultural self and cultural other hover silently for an
historical instant, face to face in dim acknowledgement of their unspoken sym-
biosis (Extraordinary 65). This striking image emphasizes not only hierarchy but
also interdependence, and the moment of confrontation between the onlooker
and the extraordinary body becomes a tense encounter that is both surreal and
revelatory.
The History of Sir Richard Calmady, with its intertwining of caress and con-
tempt, describes and embodies a relationship between onlooker and extraordi-
nary body that is characterized by an edgy breathlessness, encompassing both
desire and hurt, both solicitation and retreat. The novel represents, in fact, the
kind of awkward partnership that, according to Garland-Thomson, may be
invoked by the visual relation (Politics 57). The novel thus extends an invi-
tation to follow up some of the tantalizing loose ends that emerge in Garland-
Thomsons writings. The History of Sir Richard Calmady demands a reading that
is attentive to the fluidity and interdependence of viewer and spectacle; it thereby
asks the reader to inhabit and reflect upon the strange intimacy between on-
looker and extraordinary body.2
viSual rHetoriCS in tHe HiStory of Sir riCHard Calmady
Throughout The History of Sir Richard Calmady connections are drawn between
Richards body and practices of display. Richards story is bookended by para-
digmatic encounters with two practices of spectacle and display, the freak show
and the opera; both of these encounters serve to suggest that Richard himself
is at risk of being made an object of display. Indeed, the two encounters frame
Richards story much as conventions of display frame (imprison, interpret, and
present) the extraordinary body.
Early in the novel, Richard encounters a freak show when as a youth he goes
out riding. The show is part of a country fair, which also displays captive animals,
including a lion grown weary of the rows of stolid English faces staring daily,
hourly, between the bars of his foul and narrow cage, heart-sick with longing for
sight of the open, starlit heaven and the white-domed, Moslem tombs amid the

prickly, desert thickets and plains of clean, hot sand (Malet 105). Riding past
the fairground listening to the desolate roar of the lion, Richard sees the sign for
the freak show. This has a strong effect on Richard, leaving him with a blind ter-
ror of insecurity, which, coursing through the boys mind, filled him with ago-
nised and angry pity towards all disgraced fellow-beings, all enslaved and cap-
tive beasts. Dimly he recognised his kinship to all such (Malet 106). At several
points later in the novel, when he is experiencing moments of suffering, Richard
is again compared to the lion; at one point he is described as a creature, captive,
maimed, imprisoned, perpetually striving, perpetually frustrated in the effort to
escape (Malet 347). This repeated comparison draws the reader back to the first
sight of the freak show, implying insistently that it is social responses to Richards
physical difference that entrap him, imprisoning him in the gaze of the rows of
stolid faces, like a fly congealed in amber.
Toward the end of the novel, Richard experiences a rehabilitative moment
of revelation that drives him to return to England and embark on a life of tem-
perance and good works. Delirious with fever in his box at the opera in Naples,
Richard imagines that the audience stares, not at the figures on the stage, but at
him. He believes himself to be surrounded by velvet-like, expressionless eyes.
And all those eyes were fixed upon him, and him alone. He was the centre towards
which, in thought and action, all turned (Malet 329). This self-referential pas-
sage perfectly describes the way in which Malet has chosen to locate the ex-
traordinary body in her novel. While Richard is represented as a character with
a subjectivity, an approach that encourages the reader to identify with him and
sympathize with his situation, the novel also participates in the forceful conven-
tions of display that assault its hero. That is, it presents Richards body as a spec-
tacle. Of course, this is a somewhat paradoxical statement, since the novels mode
is language, not vision. But through its cornucopia of descriptive passages (one of
the features that make it as a whole so very lengthy), Malets novel seems to in-
corporate the dynamic developments in visual culture that were occurring at the
turn of the nineteenth century. The novel repeatedly offers showpiece scenes that
have an almost cinematic quality, and early cinema was at this time producing
footage of disabled subjects, capitalizing on the tradition of display associated
with them.
Consider, for example, the scene in which Honoria first sees Richard. Honoria
is collecting Constance from Richards home after Constance has broken off her
engagement with him:
112 Rachel OConnell

Suddenly the sharp peal of the bell, the opening of the door, the drag-
ging of silken skirts, and hurrying of footsteps.Honoria gathered up
her somewhat scattered courage and swung out into the hall. Lady Con-
stance Quayle came towards her, groping, staggering, breathless, her face
convulsed with weeping. But to this, for the moment, Miss St Quentin
[Honoria] paid small heed. For, at the far end of the hall, a bright light
streamed out from the open doorway. And in the full glare of it stood a
young manhis head, with its cap of close-cropped curls, proudly distin-
guished as that of some classic hero, his features the beautiful features of
Katherine Calmady, his height but two-thirds the height a man of his make
should be, his face drawn and livid as that of a corpse, his arms hanging
down straight at his sides, his hands only just not touching the marble
quarries of the floor on either side of him.
Honoria uttered an exclamation of uncontrollable pity and horror,
caught Constance Quayle by the arm, and hurried out into the moonlit
square to the waiting carriage. (Malet 235)
The flurried, rapid action of the scenethe women making their escapeis
halted by the sudden, contrasting, short sentenceBut to this, for the moment,
Miss St Quentin paid small heed. Action makes way for the stasis of portraiture,
as Richard is described. The narrative pauses to make way for a moment of visual
contemplation of Richards body, dwelling on aspects of his appearance that em-
phasize his physical difference: his shortness of stature, and the way his hands
almost reach the floor. Honoria is turned from actor into spectator, gazing on
Richards revealed bodily difference, and the reader is drawn into her emotions of
pity and horror. After offering the reader this emotive snapshot of Richard, the
scene transforms itself again with Honorias sudden cry, which breaks the silence
and stillness of the moment. The characters abruptly return to their roles, and
the narrative resumes. The image of Richards body has momentarily conveyed
the reader into a different place and time, outside the flow of the narrative, to ex-
perience the pregnant, ominous stillness of spectacle. The extraordinary body is
constructed as inherently spectacular, wordless, antithetical to the developmen-
tal and discursive nature of narrative.
In the example above, the representation of Richards body participates in
the sentimental visual rhetoric Garland-Thomson has identified, soliciting pity
toward Richard by modeling sympathy through Honoria. Yet, at the same time,
the descriptive focus in this passage on the beauty of Richards hair and face,

and the long reach of his phallic arms, betrays Honorias pity as alloyed with
a more uncontrollable attraction, complicating the response demanded from
the reader. The construction, in this novel, of the extraordinary body as an ob-
ject of desire is particularly evident in passages in which Helen is the agent of
the gazethe gaze to which Richard is subjected and into which the reader is
initiated. In these passages the text adopts a rhetoric that might be categorized,
again following Garland-Thomson, as exotic: a mode that presents disabled
figures as alien, distant, often sensationalized, eroticized, or entertaining in their
difference, making the disabled figure large, strange, and unlike the viewer
(Politics 6566).
The following exoticizing passage, for example, occurs during a scene in
which Richard and Helen are lunching together in his garden at Naples:
Silently he slipped down from his chair, stood a moment, supporting him-
self with one hand on the edge of the table, and then moved forward to
that side of the pavilion which gave upon the garden. Here the sunshine
was hot upon the pavement, and upon the outer half of each pale, slen-
der column. Richard leant his shoulder against one of these, grateful for
the genial heat.
Since her first and somewhat inauspicious meeting with him in child-
hood, Helen had never, close at hand, seen Richard Calmady walk thus
far. She stared, fascinated by that cruel spectacle. For the instant transfor-
mation of the apparently tall, and conspicuously well-favoured, courtly
gentleman, just now sitting at table with her, into this shuffling, long-
armed, crippled dwarf was, at first utterly incredible, then portentous,
then, by virtue of its very monstrosity, absorbing and, to her, adorable,
whetting appetite as a veritable famine might. (Malet 297)
In this passage, as in the one with Honoria above, the action of the scene (which
in this case is the dialogue between Richard and Helen) is suspended when
Richard silently takes his posea choreographed, static pose that distances him
from the onlooker, placing him in the remote, unreachable space of the spec-
tacle. His shortness of stature is exaggerated through the contrast between his
body and the tall slenderness of the column against which he leans, much as, in
freak shows, dwarves were often paired with giants to emphasize, through con-
trast, their respective heights. The passage then is focalized through Helen; the
reader is invited to participate in her absorption in and fascination with the sight
of Richards body. In Helens visual field, Richards figure is further enlarged and
114 Rachel OConnell

exaggerated, as he becomes this shuffling, long-armed, crippled dwarf, and
Helen revels in the visual pleasure that the experience of staring at Richard offers,
acknowledging him as an object of desire.
Helens exoticizing vision creates, to use Garland-Thomsons words, a sensa-
tionalized, embellished alien (Politics 66). Garland-Thomson argues that the
exotic reproduces an ethnographic model of viewing characterized by curiosity
or uninvolved objectification, and yet this passage suggests that desire carries
a cost for its agent as well as its object (Politics 65). Even as Helen asserts her
own power and privilege by objectifying Richard, the chaotic flurry of emotions
that she experiences at the sight of him (fascination, absorption, starvation) sug-
gests a loss of agency, indicating that in her desire to possess Richard, Helen risks
losing possession of herself. It is in this current, the play of desire, that the novel
invites the reader to understand and experience the relationship between on-
looker and extraordinary body as radically unstable and ambivalent.
PaSSionate PrurienCe
The complexity of the relationship between onlooker and extraordinary body

in The History of Sir Richard Calmady is best illustrated through contrast with
a strikingly stable model of a hierarchical visual relationship. In Extraordinary
Bodies, Garland-Thomson, while discussing how the freaks body can be fixed
by the gaze of the observer, refers to John Taggs account of Victorian photo-
graphs of social deviants used in medical and social case studies: the body iso-
lated; the narrow space; the subjugation to an unreturnable gaze; the scrutiny of
gestures, faces, and features; the clarity of illumination and sharpness of focus
(62). Taggs description starkly indicates the disempowerment of the deviant in
the context of a specific visual practice, and Garland-Thomson analogizes medi-
cal photography to the freak show in order to indicate the disempowerment of
the freak. Yet the very starkness of the images described by Tagg, their lack of
adornment in terms of costume and spiels, their insistence, indeed, on naked
truth over myth, narrative, and fantasy, differentiates them from the freak
show, which depended on story and visual embellishment.
Malets novel, if read as a solicitation to, or embodiment of, one kind of gaze
that might have been turned upon the extraordinary body, suggests that while
the medical specimen is naked and exposed, the extraordinary body may in
particular instances constitute a more mysterious object, continuously receding
from a yearning gaze. Even as the novel constructs Richards body as an ob-

ject of display, it simultaneously maintains a level of secretiveness and coyness,
which leaves both its characters and the reader with a sense of mystery. Richard
is described approvingly as having a wholesome pride, which is manifested in
his carefulness to avoid all exposure of his deformity (Malet 194). His desire
to avoid exposure of his legs and feet leads him to cover them all the time with
rugs and blankets, which are tantalizingly inadequate to their task: He leaned
sideways, stretching out to a neighbouring chair with his right hand, keeping
the light, silk-woven, red blanket up across his thighs with his left (Malet 217);
He turned on his elbow restlessly, and the movement altered the lie of the bed-
clothes, thereby disclosing the unsightly disproportion of his person through the
light blanket and sheet (Malet 199); and so on. In a novel that emphasizes the
visual, and presents the reader with visual tableaux of Richard, it is striking that
there is very little in the way of detailed visual description specifically of Richards
legs and feet. This visual reticence is supported by numerous narrative choices.
For example, when a doctor visits Richards home to try various prostheses on
him, the narrative focuses not on Richard and the doctor, but rather on Richards
mother as she waits outside Richards room. Thus the text refuses to allow the
reader to witness certain passages in Richards history that would reveal his body
at too-close quarters. What is offered in this novel is not the money shot, but the
burlesque dancers play with fans and feathersonly in this perpetually repeated
striptease act the props are rugs and blankets.
Richards body comes to represent not the painfully, contemptibly knowable
and known (the object of the medical photograph in Taggs account), but rather
the realm of the unknown and perhaps unknowable: the unthinkable experi-
ence and bewildering flesh of a unique and extraordinary being. For the amor-
ous Helen, in this situation of visual dearth, even the outline of Richards body,
tantalizingly glimpsed through its various coverings, offers a drop of water in the
desert: her eyes, following down the lines of the fur rug, received renewed assur-
ance of the fact of his deformityhidden as far as might be, with decent pride,
yet there, permanent and unalterable (Malet 159). Helen is a self-conscious aes-
thete, who not only desires and seduces Richard but also, throughout the novel,
offers a metatextual commentary on her own activities. Her interior monologue
delineates in very suggestive terms the kind of desire that Richards body arouses.
She observes that the man before her, by his very abnormality and a certain
secretness inevitable in that, heightened her passion. He was to her of all living
men most desirable, so that she must win him and hold him, must see and know
(Malet 298). The secretness of Richards body produces a desire to see and
116 Rachel OConnell

know, but this desire is not the intellectual curiosity of the dispassionate scien-
tist or medical photographer; it is passionate, urgent, and physical. It seeks not
principles but experience, not objectivity but intimacy: it requires not only to see
and know its object but also to approach it, to caress it, to hold it. Far from ac-
cepting the distinction between privileged self and subjugated other, Helen longs
to break the barrier between freak and audienceto climb up onto the stage
with Richard.
We could describe Helens desire as a kind of passionate prurience, and we
will do well to bear in mind the interdependency of the experiences of desire
and curiosity to which the word prurience alerts us, as we seek to understand
the gazes that pursue the disabled body, and the relation between disability and
sexuality. In the seventeenth and eighteenth centuries, the word referred to the
experience of having an itching or longing. This older meaning seems to haunt
Helens prurience, which stems from the sense of longing that Richards ever-
receding body produces in her. The repeated loss of the sight of his body, as it
is wrapped in blankets and concealed under rugs, creates a lack that incites her
curious desire. Her interior monologue renders in text the gaze that Richard
attracts. This gaze encompasses not the orgy of visual explicitness offered by
the well-lit medical photograph, but rather a failing struggle to capture moving
shadows, to bring blurred images into focus, to grasp at objects receding into the
darkness.
Helen openly expresses her desire to Richard, telling him: I do not say it
would affect all women alike. . . . But there remain the elect, Richard, among
whom I dare count myself. And over them, never doubt it, just that which you
hate and which appears at first sight to separate you so cruelly from other men,
gives you a strange empire. You stimulate, you arrest, you satisfy ones imagina-
tion, as does the spectacle of some great drama. . . . I saw you, and so doing I saw
mysteries of joy in myself unimagined by me before (Malet 3067). The act of
imagining is referred to twice in this passage and is repeatedly mentioned, par-
ticularly by Helen, throughout the novel. The mystery, the loss of Richards body
as it recedes from view, acts upon the imagination, stimulating it as though it
were a sexual organ. The imagination attempts to fill in narrative gaps that the
half-hidden body leaves empty. Desire must complete the body: not to make it
whole again, but to make it reveal itself, to make it speak. Thus, when Helen
gazes on Richards partly covered body, in her imagination she (re-
Richards deformity for herself from the imprecise form outlined by )creates
the rug
that covers him.

The entire novel could be read as an expression of the affect of loss, and the
resulting compulsion to embellish, that characterizes this gaze. By its very exis-
tence this unfashionably (for its time) prolix novel bears witness to a compulsion
to plug up gaps in experience, to substitute unattainable intimacies with great
wads of imaginative work, of narrative. In its insistence on the honest depiction
of aspects of life heretofore considered too repulsive for the novel, The History
of Richard Calmady draws on the naturalism of Zola and Gissing (Schaffer xvi).
Yet that naturalism takes on an unexpected edge if its explicitness is understood
as the expression not of social conscience but of desire, the obsessive construct-
ing of narrative prostheses to fill out the image of a cherished but mysterious
body.3 The novels naturalism is inflected by the opium-soaked, entranced logic
of aestheticism, whose style it adopts; it dwells with a kind of acquisitive won-
der on Richards body, much as Dorian Gray gazes, mesmerized, at his precious
gems and embroidered cloths. This Peeping Tom of a novel looks upon the ex-
traordinary body with a yearning gaze and caresses it with a trembling, covetous,
nervously aggressive hand. In so doing, it invites us to retheorize the gaze of the
freak show spectator and, more broadly, to reconsider the relationship among
disability, desire, and visual culture.
The small example of Helens imaginative recreation of Richards blanketed
body encapsulates the impulse behind Helens much grander and more com-
plex flights of fantasy about Richard, the spectacle of some great drama that
he evokes in her mind. And yet the content of Helens grandiose fantasies is left
vague and nebulous. It is not clear what is at stake for Helen in the matter of
Richards body. Rather, the great drama of Helens imagination exists in the
novel as a floating placeholder, marking off a space of ludic fantasy. Helens re-
sponse to her imaginings, however, is more explicitly depicted. Helen is Fired by
. . . thoughts of Richard. They filled her with a certain intoxication, a voluptuous
self-love. . . . She caressed her own neck, her own lips, with lingering finger-tips.
She bent her bright head and kissed the swell of her cuplike breasts (Malet 260).
The explicit association made between imagination and masturbation
through Helens character raises a self-referential question about the purpose of
the novel, itself a work of imagination, about its genre, we might say. Helen is no
stranger to stimulating fictions. She thinks mischievously of scandalizing lady
tourists in Italy by suggesting that they increase their knowledge of the Italian
character and language by study of the Novelle of Bandello, a sixteenth-century
collection of bawdy tales (Malet 259). Her maid reads a yellow-paper-covered
novel while waiting for Helen on the steps of a church; in the 1890s the yellow
118 Rachel OConnell

cover would have suggested sexually explicit French fiction (Malet 288). Helen is
also familiar with the corrupting literature of her lover, the debauched poet Des-
tournelles, whose technique is as amazingly clever as his thought is amazingly
rotten (Malet 296). Helen, the figure in the novel who represents the practice of
generating narrative, produces not high art but masturbatory fantasies, and her
favorite works of imaginative writing occupy a place not in the lofty canon of lit-
erature but in the soiled boudoir of trash, profanity, and smut.
Helens presence as a proxy author figure facilitates a tacit admission that the
novel itself has the potential to be ensconced within the curtains of that tawdry
boudoir. The History of Sir Richard Calmady engages in narrative practices that
border on the pornographic, as the novel makes use of certain qualities specifi-
cally associated with the extraordinary body for the purpose of titillation.4 The
ever-receding extraordinary body produces desires stemming from experiences
of loss and lack; the secrecy surrounding the extraordinary body leaves it emi-
nently textualizable, open to interpretation, inviting the elaboration and embel-
lishment that take on the impossible task of filling the gap of desire. Thus, the
extraordinary body opens up the expansive space of pleasure-oriented fantasy,
the space of Helens great drama.
One night, sitting indoors in a lighted room, Helen gazes upon Richard stand-
ing on the dark balcony of his house in Naples: slowly she raised her downcast
eyes and looked after Richard Calmady, his figure a blackness, as of vacancy,
against the elaborate wrought-ironwork of the balcony. And so doing, an ador-
able sensation moved her, at once of hungry tenderness and of fearfear of
something unknown, in a way fundamental, incalculable, the like of which she
had never experienced before (Malet 305). This image encapsulates the way in
which Richards body comes to operate as a placeholder, a chalk outline, a blank
space or page on which the wildest narratives of perverse fantasy can be written
and rewritten without end. Like a prairie or a tundra, the strange empire that
Richards body represents for Helen is a vast, empty, and unknown space, eerie
and at the same time redolent with a sense of possibility, enticing to a colonizing
imagination.5 Or we might imagine the strange empire of the extraordinary
body as a keyhole: that dark shape outlined against the door, that tiny, innocent
aperture that, for the voyeur, coyly implies unlimited salacious possibilities. The
History of Sir Richard Calmady is just one fantasy, one great drama, emanating
from this productive space.
Through its investment in the desire incited by the extraordinary body, the
novel throws light on the potentially pornographic pleasures offered by the freak

show and, more broadly, the powerful and perhaps transgressive sexual reso-
nance of the extraordinary body. The location of Richards body not only outside
of but also in opposition to normative sexuality is indicated by the way in which
the presence of his body disrupts the flow of the narrative in the novel. I have
already observed that the novel contains spaces outside the narrative in which
the text moves into a descriptive mode, conveying striking, theatrical tableaux of
Richards body that recall the freak show. These interludes represent the space of
the spectacle, which introduces a moment of stillness and absorption. These ec-
static moments are contrasted with the conventional narratives that interweave
with them: the stories of minor characters who obey the dictates of the mar-
riage plot, bear (able-bodied) children, and generally participate in the dynamic,
forward-moving time of progress, maturation, production, reproduction, and
linear narrative development.
The History of Sir Richard Calmady repeatedly claims that the tragedy of
Richards life is that his physical difference debars him from participating in this
(re)productive time of linear narrative. Yet in another sense Richards location
outside of this time indicates the potential that attaches to his physical difference.
Moments in the novel that step outside the narrative of normativity offer a respite
from its forceful flow, an escape from its narrow bounds. These spectacular mo-
ments make it possible to draw connections between the pleasures offered in this
novel and queer theorys critiques of what Judith Halberstam calls reproductive
temporality (Queer Time 4). The novels temporal disruptions seem to anticipate
and momentarily engage something like Halberstams notion of queer time,
within whose alternative temporalities . . . futures can be imagined according
to logics that lie outside of conventional cultures paradigmatic markers of life
experiencenamely, birth, marriage, reproduction, and death (2). The History
of Sir Richard Calmady invites its readers to explore the strange empire of the
extraordinary body: the territory of the spectacle, a location outside of progres-
sive time and linear narrative in which the extraordinary body incites the desire
and destabilizes the identity of the spectator and initiates countercultural ways
of seeing social and sexual worlds.
By way of ending we might return to Garland-Thomsons observation, quoted
at the start of this chapter, that the history of disabled people in the Western
world is in part the history of being on display (Politics 56). Another way of
describing this inheritance would be to say that conventional modes of represent-
ing the disabled body often overlap with the pornographic. Garland-Thomson
argues that the situation of being on display is that of being visually conspicuous
120 Rachel OConnell

while politically and socially erased (Politics 56). Malets novel, however, asks
us to reevaluate our expectations of the prurient, the smutty, and the obscene: to
consider the possibility that pornography might have the capacity to give voice
to a social critique.
noteS
An earlier version of this chapter was published as Cripsploitation: Desire, the Gaze,
and the Extraordinary Body in The History of Sir Richard Calmady, in Nineteenth Cen-
tury Gender Studies 4.2 (Summer 2008).
I have been lucky, in writing this chapter, to have had the support of several gener-
ous and supportive editors and interlocutors, all of whom have provided invaluable and
transformative insights. I thank Robert McRuer and Anna Mollow for working with
me so patiently and helpfully to prepare this chapter for publication in this collection.
My thanks also go out to Mark Mossman and Martha Stoddard-Holmes, who helped
me to prepare an earlier version of this chapter for publication in Nineteenth Century
Gender Studies, a special issue on disability and the body in nineteenth-century Brit-
ain, of which they were the editors. I also thank Talia Schaffer, who first introduced
me to The History of Sir Richard Calmady, who first instigated me to write about it, and
who generously offered her insights on several drafts of this article. Finally, I offer my
thanks to my colleagues and friends in the Disability Studies Reading Group, Alicia
Blegen, Lezlie Frye, and Akemi Nishida, who did not work with me on this article but
have supported me as I have learned about disability studies and about working with a
disability.
1. The useful phrase extraordinary body, coined by Rosemarie Garland-Thomson,
refers to bodies that are now commonly described as disabled and that have in the
past been called disfigured: bodies that transgress or exceed culturally constructed
definitions of the norm.
2. Robert McRuer argues that all of the four photographic rhetorics proposed by
Garland-Thomson have counterhegemonic potential (Crip Theory 193). The argu-
ment I offer in this chapter is similar to McRuers claim that, in the writing and perfor-
mance art of Bob Flanagan, the exotic mode is rendered transgressive.
3. I take this useful phrase from David T. Mitchell and Sharon L. Snyders Narrative
Prosthesis: Disability and the Dependencies of Discourse.
4. We might deploy here the word cripsploitation, a term of unclear provenance
that in recent years has begun to be used sporadically in the fields of disability studies
and disability performance.
5. I use the word colonizing to draw attention to the colonial resonance of Helens
phrase, a strange empire. Race, nation, and empire constitute significant themes
throughout the novel. The comparison of Richard to a lion, discussed earlier in this

essay, is another moment in which disability is connected to national and racial other-
ness. In contrast, Richards father is associated with a profoundly nostalgic and ideal-
ized version of Englishness. Perhaps the novels strangest and most complex image, in
terms of race, emerges during Richards dream vision at the opera. Richard gazes upon
Helen, who, sitting in a box at the opera, looks like a woman fashioned . . . of ivory and
gold (Malet 324). As he watches her, a black creature, exquisite and lascivious, emerges
from Helens mouth and sits in her lap, beckoning to Richard (Malet 325). The way in
which blackness, sexual lasciviousness, femininity, and freakishness coalesce in this
creature brings to mind representations of Saartjie Baartman, a woman from what is
now South Africa who was displayed as a freak in Europe in the early nineteenth cen-
tury. In the novels extraordinary image, then, the Hottentot Venus appears to emerge
from the mouth, and sit in the lap, of a European woman of idealized beautya Euro-
pean woman, moreover, who is attending that bastion of high European culture, the
opera. The interplay among race, nation, empire, and the extraordinary body in this
novel is a topic that needs further research and analysis.
122 Rachel OConnell

6
Michael daVidson
Pregnant men
Modernism, disability, and biofuturity
What you get married for if you dont want children?

T. S. Eliot, The Waste Land
God, I never asked better than to boil some good mans potatoes and toss up a child
for him every nine months by the calendar. Is it my fault that my only fireside is the
outhouse? Dr. Matthew OConnor in Djuna Barnes, Nightwood
Queer futureS and tHe reProduCtive Horizon
During the last years of his governorship of California, in the aftermath of

the presidential election of 2008in which it was debated whether the can-
didates, including Senator Hillary Clinton, were man enough for the job
Arnold Schwarzenegger found his gendered authority under scrutiny. He had
lately rocked the Republican cradle by supporting stem cell research, domes-
tic partner legislation, anddepending on the monthabortion rights. Over
the course of his career, he has morphed from body builder to Terminator to
Governator. Perhaps as foreplay to his run for the nomination for the Califor-
nia governorship, Schwarzeneggers movie Junior, released in 1994, shows him
morphing from Terminator into progenitor. He and Danny DeVito play genetic
scientists who experiment with in vitro fertilization by implanting a fertilized egg
in Arnolds hunky body. The plan is to bring the fetus into the first trimester, mar-
ket a hormone that facilitates growth, and then terminate the pregnancy while
cashing in on the new patent. The experiment works, and soon the Terminator
is coming to terms with the inconveniences of morning sickness, hormone im-
balance, and having to buy a full-figure wardrobe. Despite these discomforts, the
formerly dour Arnold likes the kinder, gentler person he becomes through preg-
nancy and refuses to follow through on the plan to abort. The joke involves see-
ing Mr. Olympia become Mrs. Olympia, and although Arnold becomes a mom,
cross-dressing at one point as a steroid-enhanced exEast German female athlete
at a maternity hospital, the film makes sure to reinforce the idea that he is not
a girlie man by introducing a love interest between him and Emma Thompson,
a fellow genetic scientist. Their relationship is complicated by the fact that the
anonymous donor egg Arnold has fertilized (unbeknownst to her) is one of her
own that she is using in her research. Thus in the end, Arnold has the baby that
the two of them would have had anyway, and in the last scene, a visibly pregnant
Emma shows that the Governator still has the right stuff.
Junior poses a question that may become more common in the genomic
future: if a pregnant woman is the most natural thing in the world, what is a
pregnant man? The movies answer is that hes simply a more sensitive male, but
perhaps another answer is that he is disabled. As DeVito tells Arnold, if this
gets out, youre a freak! It turns out that the proximity of nonheterosexual re-
production and freakish disability is a common concern in a number of recent
films and novels beginning with Blade Runner and continuing through Coma,
Never Let Me Go, Oryx and Crake, The Island, Gattaca, the X-Men trilogy, and The
Children of Men. In these texts, which raise bioethical questions about genetic
research, surrogacy, and transplant surgery gone awry, the fantasticor comic
narrative of a pregnant man becomes one among multiple futuristic scenarios
for the biologically modified natural order. Such works are usually classified as
speculative or science fiction, but one could also see them as disability narratives
insofar as they defamiliarize the presumed normality of embodied life and dis-
play the nightmares of genetic futurity as the lived realities of disabled and de-
pendent people.
If the scenario of a pregnant male has provided a freakish lens for the repre-
sentation of disability, it has offered a normalizing lens on queer identity in an
age of same-sex marriages, gay domesticity, and transgender parenting. Nowhere
124 Michael Davidson

is this phenomenon more evident than in the case of Thomas Beatie, a trans-
gender, legally male individual who is married to a biological female, Nancy.
The couple had wanted a child, but when Nancy had to undergo a hysterectomy,
due to endometriosis, they decided that Beatie would stop taking the testoster-
one injections that had prevented his menstrual cycles and attempt, with the
aid of a sperm donor, to become pregnant. After a first unsuccessful pregnancy,
Beatie became pregnant again and delivered a baby girl in 2008. In an article in
the Advocate, Beatie remarked on his then pregnant state: How does it feel to
be a pregnant man? Incredible. Despite the fact that my belly is growing with
a new life inside me, I am stable and confident being the man that I am. In a
technical sense I see myself as my own surrogate, though my gender identity as
male is constant (Beatie p. 3, par. 3). Beaties pregnancy and his interviews with
Barbara Walters, Oprah Winfrey, and others sparked an outcry in tabloids and on
late-night television, many commentators echoing DeVitos concern about the
freakish nature of the condition of male pregnancy. Yet in all of his interviews,
Beatie stresses the ordinariness of his desire to give birth and his confidence in
his masculine identity.
Although he does not address Beaties pregnancy, Lee Edelman sees such
events as a symptom of a new pronatalist scenario of compulsory reproduction
that challenges queer identitys historically subversive character. Edelman argues
that futurity is increasingly being written around the Child, capital C, which
remains the perpetual horizon of every acknowledged politics, the fantasmatic
beneficiary of every political intervention (No Future 3). This family values sce-
nario has, of course, been operative within the religious Right for some time, but
it now applies to activism on behalf of gay marriage, domestic partner legisla-
tion, and child-raising that threatens to transform queer politics into something
a good deal more mainstream. Edelman notes the peculiar logic of this syn-
drome that says if the Child represents the positive future for gays and lesbians,
then queer must mean negative futurity: queerness names the side of those not
fighting for the children, the side outside the consensus . . . outside and beyond
its political symptoms, the place of the social orders death drive (No Future 3).
Why death drive? Because within the all-consuming logic of biological futurity,
not accepting the telos of the child involves naming what the queer, in the order
of the social, is called forth to figure: the negativity opposed to every form of
social viability (No Future 9). It is here that queer and crip identities merge in-
sofar as social viability usually means compulsory able-bodiedness as well as
heteronormativity.1 In the legal rhetoric of euthanasia proponents, to be invalid
Pregnant Men 125

as a subject means having a life not worth living. Hence, by a similar logic, crip
futurity might be seen as the negation of those forms of embodiment and repro-
duction that medicine, psychoanalysis, and genetics must reinforce and affirm.
As the Theresa Schiavo case in 2005 and the controversy over the film Million
Dollar Baby in 2004 demonstrate, the nonproductive body that medical science
would consign to the dustbin is always, potentially, the body we wouldnt want
our daughter to bear, the body we wouldnt want to keep on life support, the
body that, could it speak, would want not to be born. Edelmans argument is not
about disability, but it does raise the question of what embodied futures can be
envisioned when reproduction is no longer the province of the heteronormative
family, when the Child no longer authorizes the narrative of biofuturity. Debates
about surrogacy and in vitro fertilization invariably circle around whether such
biotechnologies simply update eugenic practices that historically isolated and in
some cases euthanized the deviant, disabled, or feebleminded. If social repro-
duction mirrors biological reproduction, the Child, as Edelman says, performs
important cultural labor in securing the Holy Family against contamination (No
Future 19). When reproduction occurs outside of the female womb, the child that
resultslike Dionysus, born from the thigh of Zeusmay lead to social chaos
and bacchic excess. As I will argue with respect to Djuna Barness Nightwood, the
figure of the pregnant male is the site of such uncanny futuritya figure femi-
nized in his ability to bear children, queer in challenging traditional gender roles,
disabled because freakish and often subjected to medical and therapeutic care.
As my example of Dionysus indicates, the theme of male pregnancy is hardly
new. It is the foundation of many Western narrativesfrom Greek myth (the
birth of Athena from the head of Zeus) to the Old Testament (Eve born from
Adams rib) to rituals of male couvade and sympathetic birthing to early modern
literature. Plato in Thaeatetus speaks of philosophical pregnancy, in which the
corporeal pregnancy of women is contrasted to the philosophical travail enabled
by Socrates.2 Eighteenth-century molly houses, or gay taverns, included yearly
Festival Nights in which men participated in acts of cross-dressing, birthing,
and lying-in as forms of gay parturition camp.3 As Sherry M. Velasco points out,
the image of male pregnancy appears in numerous medieval and early modern
works by Cervantes, Boccaccio, Shakespeare, and Dryden. In such early narra-
tives the trope of male pregnancy posits epistemological or aesthetic creativity
against female conception, gestation, and birth (in his prologue to Don Quixote,
Cervantes describes his book as the child of my brain).4 In the modernist era,
however, what had been a metaphor for aesthetic fecunditythe male authors

ability to transmit his literary legacy parthenogeneticallybecame a biofuturist
potentiality. At a moment in which racial science and eugenics presented brave
new worlds purged of defective, degenerate bodies, and in which sexological dis-
course made visible (and pathological) a new set of practices and subjects, the
spectacle of male pregnancy was enlisted to imagine futures written in biopoliti-
cal terms.
Modernist cultural representations of the pregnant male foreground the spec-
tacle of reproduction loosed from its putative organic site in the female body and
displace it elsewhere: the test tube, the surrogate womb, the male body, andnot
insignificantlythe novel. This displacement effects both a queering and a crip-
ping of normative attitudes toward reproductive health and the futures that such
embodiment implies. The displacement of pregnancy away from female bodies
warps traditional narrative attitudes toward biological futurity when the family
romance no longer reproduces the heterosexual family. It is in this context that I
read Djuna Barness novel Nightwood: not as a baroque anomaly among stream-
of-consciousness narratives of Woolf, Stein, or Faulkner, but as arguably the rep-
resentative modernist novel insofar as it offers an inside narrative of individuals
interpellated within biological and racial science.5 Rather than seeing the cul-
tural logic of male pregnancy as a simple displacement of gestation from female
to male body, I see it as a figuring diaspora of sexual and gendered possibilities
among bodies and minds of various abilities and cognitive registers.
Throughout the Progressive Era, practical versions of eugenic theories were
applied in asylums, hospitals, and prisons, in which inverts and mental de-
fectives were sterilized, incarcerated, or euthanized in the name of racial and
psychological purity and national consolidation. If eugenics imagined a future
of better babies and healthy families, it also constructed a past to which those
deformed and disabled bodies could now be consigned. Thus the Old World
could be used to describe both the backwardness of immigrants who refused to
relinquish their cultural traditions and those deemed lower (and earlier) on a
social Darwinian evolutionary scale. Prompted by the writings of Francis Galton,
Magnus Hirschfield, Otto Weininger, and Richard von Krafft-Ebing, modernist
writers often annexed their futurismsincluding their linguistic innovations
to such biopolitical reforms. These fatal alignments have made it impossible to
dissever Ezra Pounds historical poetics, Gertrude Steins theories of the bot-
tom nature, F. T. Marinettis posthuman futurism, or T. S. Eliots anthropological
interests from their intellectual pursuits of racial science and eugenics. Nor were
their investments strictly theoretical. Here, for instance, is D. H. Lawrence: If I
Pregnant Men 127

had my way, I would build a lethal chamber as big as the Crystal Palace, with a
military band playing softly, and a Cinematograph working brightly. Then Id go
out in the back streets and main streets and bring them in, all the sick, the halt,
and the maimed; I would lead them gently, and they would smile me a weary
thanks (qtd. in D. Childs 10). Lawrences fusion of commercial exhibition site
and gas chamber suggests that within the cultural advance guard two futures
were envisioned, one for racial others, persons with disabilities, and sexual in-
verts, and another for Northern European, heterosexual, able-bodied persons.
The latter were provided with utopian solutions, socialist and fascist, for a future
free of what was politely called amalgamation. For the former, however, there
was to be no future. They represented the past, the ill-formed, the animal, that
needed to be expunged for the right future to be possible. As we will see with
respect to Nightwood, this negative future also produced a carnivalesque mod-
ernism that contests Lawrences draconian version.
In this context, male maternity becomes a metaphor that enables modern-
ism to figure negative futures in relation to the threat posed by nontraditional
forms of reproduction. The figure of the pregnant male could be seen as a cam-
era obscura on modernitys anxieties over violated biology and traduced nature.
Dr. Schreber is the exemplar. In Freuds case study of 1911, Schrebers paranoid
psychosis, as Schreber describes it in his Memoirs of a Neurotic, takes the form of
a messianic feeling that he must redeem the world by producing a superior race
of men. In order to fulfill his destiny, he must first be transformed into a woman
and then become impregnated by God. Reading this fantasy as a diversion of
Schrebers conflicting homosexual desires onto a transgendered scenario, Freud
does not confront the maternity that is at the heart of the fantasy. In order to
diagnose the vehicle of Schrebers fantasyhomosexuality as pathologyFreud
must avoid the fantasy of parthenogenesishis womb envythat is the trou-
bling tenor.6 This form of desire (and Freuds attempt to contain it within a diag-
nosis of perverse sexuality) becomes particularly salient at a historical moment
in which medical science is intervening in reproduction; that is, as eugenic so-
cial policies and practices attempt to stabilize gender and racial differences and
monitor reproductive processes and potential sexual partners. Within eugenic
futurity, such engineering would force women to cede control of reproduction
to males and thus become ancillary to the biological order. As Freuds diagnosis
illustrates, Schrebers desire to redeem the world through pregnancy is the out-
burst of homosexual libido that must be returned to heterosexual conformity
(Three 145). The specter of male maternity is among those forms of reproduction

that cannot be figured either as part of the Progressive Eras narratives of health
and improvement or in terms of modernist aesthetics formalism of the spatial
or organic text.
Dr. Schreber is one among a small but significant modernist gallery of male
characters who in various ways assume feminine reproductive roles. Another
candidate for this category is Ralph Touchett in Henry Jamess Portrait of a
Lady. Ralphs mysterious, lingering illness serves as a period of gestation during
whichsince he cannot produce a child with Isabel Archerhe may produce a
surrogate by assigning his inheritance to her. Isabel is then free to choose a future
for herself, unencumbered by financial concerns, a freedom she sacrifices by
marrying the Machiavellian Gilbert Osmond. As Eve Kosofsky Sedgwick points
out with reference to Jamess bachelors, Ralphs illness represents his inability to
imagine heterosexual futurity, not because he is homosexualthe category had
barely emerged discursivelybut because his lack of heterosexual desire renders
him invalid within the terms of social viability.7 He is an invalid, not only in
the medical sense but also according to the proprieties of late-Victorian sexual
mores, which can imagine a procreative future only within the family. To fail to
imagine such a future is to enact a form of invalidism or perpetual bachelorhood.
By transferring his paternal inheritance to Isabel, Ralph may produce a family
in absentia, leaving Isabelas it turns outto suffer the grim consequences of
confusing Ralphs bequest with freedom of choice.
A second and more obvious example of male maternity is Leopold Bloom
in Joyces Nighttown chapter of Ulysses. Bloom relives his daytime cultural
and racial ostracism at night through a sadomasochistic nightmare of abjec-
tion in Bella Cohens brothel. Wearing a corset and forced onto his knees by the
whoremistresses Bella, he endures the slings and arrows of female domination
and authority (402). Stately plump Buck Mulligan, in his capacity as medical stu-
dent, appears on this phantasmagoric scene to pronounce Bloom, who is about
to have a baby, bisexually abnormal (429). O I so want to be a mother, Bloom
declares, whereupon he promptly produces eight male yellow and white chil-
dren . . . wellmade, respectably dressed and wellconducted, speaking five modern
languages fluently and interested in various arts and sciences (Joyce 403). Dur-
ing his peregrinations throughout Dublin, Bloom has mourned the loss of his
son, Rudy, and repressed his sexual alienation from his wife, Molly. Now, in his
nightmare confrontation with his own femininity, he becomes, as Mulligan says,
a finished example of the new womanly man (Joyce 403). Sandra Gilbert and
Susan Gubar read such fantasies of sexual inversion as signs of the excesses
Pregnant Men 129

of female misrule associated with womens liberation during the war years that
Bloom casts off in the novels final scenes by taking control of his domestic situa-
tion (334). But as with Freuds analysis of Dr. Schreber, critics like Gilbert and
Gubar tend to read such scenes of feminized masculinity as signs of historical
gender trouble that patriarchy strives to monitor. They do not account for the
womb envy and erotic pleasure identified with female sexuality that Bloom has
experienced throughout the day and that appear in their more carnivalized forms
in Joyces Circe chapter of Ulysses.
My third example of male pregnancy appears in Ezra Pounds Canto XII, in
which the speaker repeats a story that the lawyer and arts patron John Quinn has
told a group of bankers about a sailor who, while in hospital following a bout of
drinking, appears to have delivered a child. When the sailor wakes up from his
ordeal, the hospital staff presents him with a child just delivered by a poor pros-
titute and then declare: Here! this is what we took out of you (Pound 56). The
sailor recovers, saves, and invests his money, and having prospered, sends his
child to college. On his deathbed, the honest sailor responds to his sons solici-
tude:
Dont, dont talk about me, Im all right,

Its you, father.
Thats it, boy, you said it.
You called me your father, and I aint.
I aint your dad, no,
I am not your fader but your moder, quod he,
Your fader was a rich merchant in Stambouli (Pound 5657)
Pound draws upon the Dantean condemnation of usurers and sodomites as

those who pervert nature through economic and sexual practices that prevent
natural increase. Quinns story mocks the bankers he addresses (Alias usurers
in excelsis) by suggesting that the sailors belief that he has produced a child due
to a homosexual encounter is a bawdy version of what the bankers themselves
practice by charging interest. Like Eliots Mr. Eugenides in The Waste Land, who
solicits a homosexual tryst with the poems speaker, the honest sailor of Canto
XII is identified with the merchant class, whose mobility and cosmopolitan-
ism are a threat to both heterosexual and national stability. Male pregnancy, in
each of the examples I have described, is linked to the conflation of material
wealth and biological dystopia, whether through Ralph Touchetts diversion of

his paternal inheritance to facilitate a loveless marriage, Blooms absorption of
anti-Semitic slurs about thrift and money lending, or the honest sailors merging
of childbirth with the increase of wealth. And although it may seem a stretch to
link these scenes of male pregnancy with disability, they lay bare the artifice of
bodily normality by imagining biological reproduction as an unnatural act per-
formed through an unnatural body.
imPermiSSible blood:
nigHtwood and tHe genealogiCal imPerative
A more complex instance of this intertwinement of sexuality, disability, and re-

production is the representation of Dr. Matthew OConnor in Djuna Barness
Nightwood (1936). Although his qualifications as a pregnant male are not quite
as overt as in my previous examples, OConnors queerness is organized around
his feminized reproductive desires: for no matter what I may be doing, in my
heart is the wish for children and knitting. God, I never asked better than to boil
some good mans potatoes and toss up a child for him every nine months by
the calendar (Barnes 91). As a sham gynecologist-cum-psychoanalyst, OCon-
nor is the carnivalesque version of those late nineteenth-century professionals
who monitored the minds and bodies of women, disabled people, and homo-
sexuals.8 OConnor violates the terms of clinical practice, with his filthy room
and brimming swill pail, his decaying obstetric equipment (a rusty pair of
forceps, a broken scalpel), and his reversal of the psychoanalytic protocols (he
asks rather than answers the questions; he lies on the couch while the patient
occupies the analysts position in the chair).9 But as self-acknowledged outsider,
the old woman in the closet, OConnor is uniquely positioned to advise one
of the main characters, Nora Flood, about the vagaries of interstitial identity.
In the novels central scene, Nora encounters him late at night at home, cross-
dressed in a womans nightgown and wig, heavily made-up, and surrounded by
cosmetics (perfume bottles, almost empty, pomades, creams, rouges, powder
boxes and puffs [Barnes 79]). She has sought his counsel on the matter of her
abortive lesbian relationship with Robin Vote, but his elliptical answers are in-
formed as much by his own abject status as by his psychoanalytic understand-
ing. As someone whose only fireside is the outhouse and who haunts the pis-
soirs as naturally as Highland Mary her cows, he domesticates the underworld
of Paris and regards his circulation within the queer demimonde as a bucolic
Pregnant Men 131

drive that, if it includes casual sex in public, may as easily include a stop at the
Catholic Churchnot, as it turns out, to hear Mass, but to masturbate. In short,
his queerness occupies narratives of both sexual abjection and domestic or insti-
tutional normality.10
As a cross-dressing male with maternal desires, as the doctor who brought
[Nora] into the world, Dr. OConnor combines the roles of father and mother,
obstetrician and pregnant woman, analyst and analysand, which medical science
segregates. By blending these roles he functions much as Tiresias does in The
Waste Land, as a prophet of dystopic futurity, albeit in a more Rabelaisian ver-
sion. If he is un-reproductive as mother or doctor, he is pro-ductive as raconteur
and storyteller, his bawdy anecdotes and salacious gossip providing much of the
matter of the novel. OConnors rambling speeches refuse any linear narrative
that would end with familial resolution and restoration of order. The novels non
sequiturs, baroque rhetoric, and elaborate hyperbole force attention onto the
surface of language, rather than elucidating some interior psychological state.
Barness novel is the antithesis of the modernist interior monologue, which at-
tempts to render some subterranean, unchanging bottom nature or core person-
ality. OConnors monologues shatter stable identities, merging scatological and
theological rhetoric, vernacular and dynastic culture, ornate metaphors and per-
formative denunciations. Such linguistic mixing is a textual version of that racial
and sexual ambiguity that threatened the interwar European bourgeoisie. And as
I will show with respect to Barness portrayal of disabled characters, OConnors
verbal grotesquerie is a textual equivalent of the nontraditional body, the circus
freak or mentally ill patient who cannot be assimilated into normative models of
health, growth, and the statistical average. In this respect Dr. OConnors child
is the text his logorrhea continually produces.
OConnors reproductive desires are expressed within a novel with a child at
its center, but the child, rather than redeeming history, often serves as a reminder
of its loss. The novels opening lines suggest that in Nightwood childbirth is a mat-
ter not of biology but of discourses about race and the body:
Early in 1880, in spite of a well-founded suspicion as to the advisability

of perpetuating that race which has the sanction of the Lord and the dis-
approval of the people, Hedvig Volkbeina Viennese woman of great
strength and military beauty, lying upon a canopied bed of a rich spectacu-
lar crimson, the valance stamped with the bifurcated wings of the House
of Hapsburg, the feathered coverlet an envelope of satin on which, in mas-

sive and tarnished gold threads, stood the Volkbein armsgave birth, at
the age of forty-five, to an only child, a son, seven days after her physician
predicted that she would be taken. (1)
As Joseph Boone has observed, this opening passage establishes a theme of es-
trangement and permanent wandering that characterizes this marginal society
and that finds its primal form in the birth trauma (238). The child, Felix Volkbein,
is born not into the heimlich family but into perpetual alienation and dislocation;
he is a product of his parents aspirations for national and cultural authority. To
some extent he is the prototype for all the novels other characters, in their de-
territorialized relationships to family, nation, and heteronormativity. Barness
baroque prose, with its multiple subordinate elements and qualifiers, imitates the
ornate features of the Volkbein coat of arms, a design whose elegance contains
both the schematic memory of Habsburg greatness and the anti-Semitism at its
secret heart. It turns out that the heraldic design is utterly fabricated, a pastiche
invented by the father, Guido Volkbein, in an attempt to fashion a noble lineage
as a bulwark against racial memory.11 Like so much else in the novel, surface de-
sign belies uncertain origins. Hedvig Volkbeins dedication to Austro-Christian
militarism is qualified by her fear that the son she is about to bear contains the
impermissible blood of the Jew. Her husband, although steeped in Christian
and aristocratic trappings, is Jewish and lives with the memory of his historic
racial oppression. For early critics of the novel like Philip Rahv, who felt that
Barnes simply exploited perversion to create an atmosphere of general mystifi-
cation and psychic disorder, such passages suggest that the psychic disorder
has a historical referent in the anti-Semitism that haunted fin-de-sicle Europe
and would lead, ultimately, to the death camps (qtd. in Parsons 60).
As the child with whom the novel opens, Felix Volkbein embodies the dying
embers of empiric Europe, epitomized by his mothers Habsburg origins and
fathers diasporic (Italian and Jewish) lineage. His father, Guido, wears a hand-
kerchief commemorating a fifteenth-century Roman ordinance that forced Jews
to race in the public square with a rope about their necks for the amusement of
the Christian populace (Barnes 2). Through this bit of sartorial display, Guido
Volkbein signals a tragic awareness of his racial otherness yet at the same time
distances himself from the impermissible blood that is his heritage. Felix in-
herits his fathers remorseless homage to nobility and his Viennese mothers
militarism; he hopes to pass both on to his own son (Barnes 2). Lacking any con-
tact with his biological parents and obsessed with history, Felix creates a mythi-
Pregnant Men 133

cal past based on Old Europe, old masters paintings, excellent manners, royal
titles, and the Catholic Church. Because he has no authentic link to royalty, he
creates a soi-disant aristocracy out of the circus and the theater, sham salons in
which he aped his heart (Barnes 11). Caught between fake aristocrat and wan-
dering Jew, Felix is the epitome of the rootless cosmopolitan despised equally
by Hitler and Stalin, whose home is the caf, the salon, and the hotel foyer and
whose origins lie in the racially assimilated culture of Habsburg middle Europe.
If Felix expresses a nostalgia for the blood of aristocratic privilege and the
hierarchical authority of the sovereign, his own son, also named Guido, is a
stereotype of eugenicist degeneration theory through inbreeding:12 as time
passed it became increasingly evident that his child, if born to anything, had been
born to holy decay. Mentally deficient and emotionally excessive, an addict to
death; at ten, barely as tall as a child of six, wearing spectacles, stumbling when he
tried to run, with cold hands and anxious face, he followed his father, trembling
with an excitement that was a precocious ecstasy (Barnes 107). The fact that the
son of Felix Volkbein and Robin Vote, a Jewish man and a lesbian, is mentally ill
is no small feature of the novels representation of the ostracized other; it is a fact
as important to its modernist diagnosis of decay as Benjy Compsons cognitive
disability is to The Sound and the Fury or the hemophilia of the czars son, Alexis
Romanov, is to the narrative of the Bolshevik Revolution. The disabled child be-
comes the specter of tainted blood that eugenics sought to control.13
The childs historically overdetermined existencementally retarded, Jew-
ish, motherless, physically stuntedmarks the novels thematic treatment of
the child as the site of dystopic futures. Unlike the romantic Bildungsroman,
which must return the orphaned child to his or her familial legacy, Barness
childrenreal and imaginedare perpetual isolatoes who upset the domestic
ideal of the stable, heterosexual family and the continuity of biologically repro-
ductive futurity that is the centerpiece of much narrative fiction. Young Guido is
not the only child in the novel. The discrete object of desire in the novel, Robin,
is often called a childher bisexuality, sexual adventurousness, and somnam-
bulism suggesting Freuds preconscious, infant state, which exists outside of or
prior to socialization. If OConnor is logorrheic, Robin is virtually mute, uttering
only a few phrases in the novel as a sign, perhaps, of her preoedipal, prelinguistic
status. The lesbian relationship she shares with Nora is defined as one between an
overly protective mother (Nora) and a wayward child (Robin). Although Robin
is figured as a child, she is also a mother of a child, Guido. Yet her maternal
abilities are nonexistent; she leaves the child-raising aspects of her married life

to her husband, Felix. Childlike in her passiveness and blankness, Robin bears
some similarity to a doll. The doll becomes an important metonym for the les-
bian relationship itself and an object toward which charged emotional energies
are focused. Nora and Robin share a doll that they call their child, and when
she becomes angered at Noras possessiveness, Robin smashes the doll on the
floor. Later, when Robin leaves Nora for a new lover, Jenny Petherbridge, the
latter gives her a doll as a sign of their new relationship (Barnes 147). OCon-
nor, ever wise in the meaning of partial objects, links dolls specifically to queer
identity: The last doll, given to age, is the girl who should have been a boy, and
the boy who should have been a girl! The love of that last doll was foreshadowed
in the love of the first. The doll and the immature have something right about
them, the doll because it resembles but does not contain life, and the third sex
because it contains life but resembles the doll (Barnes 148). This comparison of
the queer and the doll summarizes the periods sexological characterizations of
homosexuality as a stage of arrested (bisexual) development, but it hints at the
performative character of queer identity in which the doll becomes a theatrical
surface upon which normal sexual relations are embossed. Where Krafft-Ebing
or Havelock Ellis pathologized the third sex, for Barnes it seems to be a form of
innocence that escapes both Felixs genealogical imperative and Noras parental
restrictions. OConnor, in his late night analytic session with Nora, encourages
her to bow down to that innocence, for which the doll is a partial object, and
accept difference as a mode of being.
Nightwood was written at a transition point in eugenicist and sexological dis-
courses. Although the date of its origin is in disputeit was possibly begun as
early as 1927 and was published, with the help of T. S. Eliot, in 1936it clearly
chronicles Barness passionate love affair with Thelma Wood, which began in
1921 and ended in 1929.14 Despite the fact that many of her contemporaries and
friends (Mina Loy, Natalie Barney, Gertrude Stein, and T. S. Eliot) had absorbed
eugenic theories, Barnes is not known to have been interested in movements for
racial purity. However, her novels cast of queers, cross-dressers, disabled per-
sons, and racialized outsiders seems drawn from one of Bertillons or Lambrosos
catalogues of defectives. The period during which Nightwood was composed
saw a shift from theoretical to more material applications of eugenics through the
increased use of incarceration, euthanasia, and sterilization, which would lead to
the Nazi Final Solution.15 Felix Volkbeins sham aristocracy and nobility ape the
racialized and sexualized characters perverse relationship to eugenic taxono-
mies. Against the imperative to categorize and monitor bodies, Barnes creates a
Pregnant Men 135

world, as Jane Marcus writes, of merging, dissolution, and above all, hybridiza-
tionmixed metaphors, mixed genres, mixed levels of discourse from the lofty to
the low (223). Barness characters, far from being a sideshow to the main event,
are the primary agents of the novel; they accept their outsider status and form
what Joseph Boone characterizes as demimonde of the inappropriate (234).
The centerpiece of this demimonde is the circus. Most of the characters are,
in some way, connected to carnival and theater as a sign of their marginal re-
lationship to the dominant society. Significant events occur in dressing rooms
and backstage areas, where the divisions between reality and fantasy, body and
costume, human and animal become confused. The false Baron, Felix Volkbein,
frequents the circus because its denizens defy his acquisitive temperament: The
circus was a loved thing that he could never touch, therefore never know. . . . The
people of the theatre and the ring were for him as dramatic and as monstrous as
a consignment on which he could never bid (Barnes 12). Through Dr. OConnor,
we meet Nikka, the black, tattooed bear wrestler; the trapeze artist Frau Mann;
the Duchess of Broadback; and others, gaudy, cheap cuts from the beast life,
immensely capable of that great disquiet called entertainment (Barnes 11). In
a world in which characters are already marked racially or sexually, the circus
provides a richly embroidered backdrop for that inversion of roles that Bakh-
tin characterizes as the carnivalesque. Felixs obsession with royal titles is mim-
icked in the circus performers adoption of titles: Princess Nadja, Principessa
Stasera y Stasero, and King Buffo. Nora is a publicist for the Denckeman Cir-
cus in New York; she meets Robin in front of the lion cage. Robin meets Jenny,
for whom she leaves Nora, at a performance of Rigoletto, an opera with a court
jester and hunchback in its title role. Robin meets Nora at an evening at Count
Altamontes in which the attendees are described as living statues. OConnors
speeches themselves always seem to be dramatic monologues, full of quotations
from plays (in his preface Eliot compared the novel to Elizabethan tragedy).
Felix provides the best gloss on the value of carnival performativity when he
says, [ones] life is peculiarly ones own when one has invented it (Barnes 118).
Readers may hear vestiges of Wildean aestheticism in this remarkand, indeed,
Felix does seem to be a kind of deterritorialized dandybut it achieves particu-
lar historical valence in the context of Weimar era disruptions.
Perhaps most important in reinforcing the carnivalesque are the many refer-
ences to animals. Robin is described as a beast becoming human; elsewhere,
Dr. OConnor describes her as an eland coming down an aisle of trees . . . a
hoof raised in the economy of fear (37). Like the animal trainers and sideshow

characters in Tod Brownings movie Freaks, released in 1932, circus performers
often resemble the animals they tend (the men smelling weaker and the women
stronger than their beasts [Barnes 11]). In the novels last scene, Robin, in order
to demonstrate her abject status to Nora, gets down on all fours in front of Noras
dog, barking and crawling after him in a fit of laughter, obscene and touching
(Barnes 170). The inversion of the word God in dog, coupled with Robins
performance of this act in a chapel, suggests the ultimate reversal of theological
and sexual values implied in the eugenicist term degeneration. With respect to
this chapters concern with biological futurity, such moments call into question
species identity and blur the boundaries between human and animal, animate
and inanimate, sacred and profane. Robins much analyzed imitation of a dog
seems less a sign of her lesbian abjection, as critics have said, than a fulfillment
of OConnors injunction to Nora to bow down to the animal nature her ratio-
nal human subjectivity repudiates.
tHere iS more in SiCkneSS tHan tHe name of tHat SiCkneSS
Critics have devoted extensive attention to Nightwood s feminist, lesbian, and

antiracist features, but they have not attended to its representations of disability,
either as embodied in the novels characters or as a diagnostic tool for testing atti-
tudes about bodily normality. On the one hand, Barnes trades in stereotypes of
impairment as character flaw, Guidos mental illness and his fathers monocular
vision being the most obvious examples.16 On the other hand, disability under-
lies many of the characterizations of marginality in the novel, making it a kind
of ur-identity for the stigmatized bodyfrom Nikkas tattooed body to Robins
dementia. Despite (or because of) his fake credentials as a doctor, OConnor
offers an excellent diagnosis of the social model of disability. Speaking of Guidos
mental illness, he notes that
His sanity is an unknown room: a known room is always smaller than an

unknown. If I were you, the doctor continued, I would carry that boys
mind like a bowl picked up in the dark: you do not know whats in it. He
feeds on odd remnants that we have not priced. He eats a sleep that is not
our sleep. There is more in sickness than the name of that sickness. In the
average person is the peculiar that has been scuttled, and in the peculiar
the ordinary that has been sunk; people always fear what requires watch-
ing. (Barnes 120)
Pregnant Men 137

Instead of regarding Guido as a defect or retarded child, OConnor treats him
as a field of potential, a reminder of the peculiar that the rational mind must
repress. OConnor anticipates current theoretical accounts that regard disability
not as the name that medicine gives to impairment but as those limits that the
so-called average person imposes on nonnormative bodies and processes of cog-
nition. OConnors remarks recognize the anxietywhat Ato Quayson calls aes-
thetic nervousnessover bodily contingency that disability occasions among
able-bodied persons. As OConnor concludes, in a remark that could apply to
many of the marginal figures in Nightwood, people always fear what requires
watching.17 Since all the characters in the novel are objects of a scopic regime,
whether as theatrical actors or as cross-dressing freaks, they require watching.
OConnors play of words on require suggests that persons with disabilities
require policing and monitoring, yet their difference fascinates and amazes.
A second modality of disability in the novel is as a metaphor for excessive or
liminal existence. Barnes compares Noras desire for Robin, during the latters
late night perambulations, to the aftereffects of an amputation: As an amputated
hand cannot be disowned because it is experiencing a futurity, of which the vic-
tim is its forebear, so Robin was an amputation that Nora could not renounce.
As the wrist longs, so her heart longed, and dressing she would go out into the
night that she might be beside herself (Barnes 59). Robin has begun to wan-
der, both literally into the city and sexually into other relationships, and Nora
stays awake at night like an anxious parent, experiencing her lovers absence as a
phantom limb. In Barness complicated figure, disability is a marker of absence,
but it is also a marker of lesbian desire insofar as the body from which Nora feels
alienated is like her own. Nora acknowledges that Robin has been both my lover
and my child. For Robin is incest, too; that is one of her powers (Barnes 156).
Hence, when she goes out at night, Nora is beside herself with anxiety for the
beloved but also one with the beloved as an aspect of herself. Freud regarded
homosexuality as an arrested stage in the evolution of normal sexuality out of
its bisexual childhood nature. Barnes repudiates this logic, writing in a letter to
Emily Coleman, [well] of course those two women would never have been in
love with each other if they had been normal, if any man had slept with them,
if they had been well fand had born a child. To the heterosexist logic that
equates fulfillment with male intervention, Barnes responds that this is igno-
rance and utterly false. I married Robin to prove this point, she had married, had
a child yet was still incurable (qtd. in Plumb xviii). Barness mocking use of
queerness as disease (incurable), heterosexuality and ableism as cure, under-

cuts the way that biologistic theories of normative sexuality and embodiment re-
inforce a heteronormative ideal whose default is reproduction. As one of Eliots
cockney pub denizens asks Lil in The Waste Land, What you get married for if
you dont want children? (42).
Eliots speakers question states in demotic terms the poets elegiac theme of
unproductive nature, but whereas the author of The Waste Land bemoans the
aridity of sexual relationships, Barnes sees pronatalisms compulsory character as
a ruse to isolate and marginalize. Despite these differences in evaluation, Eliots
admiration of Nightwood stems from the way Barnes figures the crisis of post-
Habsburg Europe through images of debased, abjected bodies that bear the full
weight of historical loss. In one crucial passage, Dr. OConnor tries to describe
Felix Volkbein: Theres something missing and whole about the Baron Felix
damned from the waist up, which reminds me of Mademoiselle Basquette, who
was damned from the waist down, a girl without legs, built like a medieval abuse.
She used to wheel herself through the Pyrenees on a board (Barnes 26). OCon-
nor sees Felix (whose false baronial title mimics the doctors own fake medical
credentials) as the inverted reflection of Mademoiselle Basquette, whose missing
legs damn her from the waist down, the more so because they render her vulner-
able to abuse: a sailor saw her one day and fell in love with her. . . . So he snatched
her up, board and all, and took her away and had his will; when he got good and
tired of her, just for gallantry, he put her down on her board about five miles
out of town, so she had to roll herself back again, weeping something fearful to
see, because one is accustomed to see tears falling down to the feet (Barnes 26).
Mademoiselle Basquettes vulnerability as a disabled woman is the other side of
Felixs disability as a Jew in pre-Nazi Austria. OConnors response to this story
is to see her pathos in terms of the way that disability unsettles the usual image
of suffering: Ah, truly, a pin board may come up to the chin of a woman and
still she will find reason to weep. I tell you, Madame, if one gave birth to a heart
on a plate, it would say Love and twitch like the lopped leg of a frog (Barnes
27). In his elaborate metaphor OConnor reduces love to an involuntary muscle,
one that, like Noras phantom limb relationship to Robin, is both separate from
the body yet able to live an independent life. On the one hand, it is a figure of the
endurance of affectthe idea that even in the most reduced circumstance, the
heart has its reasons of which reason is unaware. On the other hand, it is a figure
of abjection that we see everywhere in the novelthe body without organs,
the body violated, and most importantly, the disabled body subject to the able-
bodied sailor.
Pregnant Men 139

By reading Nightwood against the backdrop of Fascism, Marcus and others
have usefully shown how the novels carnivalesque treatment of an alternate so-
ciety of Jews, queers, and disabled persons must be read within the context of
Hitler and Mussolinis rise to power in Europe, as well as through the periods use
of medical science in the name of racial purity. Cognitive impairment becomes,
in the public mind, the logical outgrowth of aristocratic inbreeding and womens
independence. In Nightwood there is no redemptive, atavistic survival or folk-
loric tradition waiting to redeem the shards of fragmented culture. The modern-
ism of Nightwood rests in its exposure of the cultural logic whereby bodies and
affective states are marshaled into categories of able-ness and heteronormativity.
Barnes strikes at the heart of how those categories are normalized within the
family by queering the family unit: her novel presents us with a transgender ob-
stetrician who wants to become pregnant, a lesbian mother who is more a child
than her own child, and a heterosexual Jewish male who wants his mentally re-
tarded son to be the next czar. If these scenarios sound like variations on Freuds
case studies of sexual delusion, they also constitute the family values ethos of
Barness Rabelaisian fiction and pose a different (and more sympathetic) assess-
ment of those hooded hoards and neurasthenic women that populate modern-
ist texts.
legal fiCtionS
In her book Pregnant Men, the feminist legal theorist Ruth Colker argues that
restrictions on reproductive freedom for women are hampered by the fact that
the Supreme Court refuses to regard that freedom as gender based: Put simply,
there are no pregnant men to which we could compare women to show gender-
based treatment. All pregnant people are treated alike; it is irrelevant (to the
Supreme Court) that all pregnant people are women (128). In the early 1990s,
when Colkers book was written, this formulation may have seemed unremark-
able. Today, with the increased use of genetic engineering, surrogacy, and in
vitro fertilization, the question of pregnant personhood is a good deal more
complex.18 In order to deal with gender discrimination around pregnancy and
reproductive health, Colker observes, We need a way to talk about pregnant
men (128). If we could, she observes, we would see that many of the legal claims
for equal rights do not take female biology into account, nor do they take into
account the misogynist nature of groups that oppose abortion and support vio-
lence against women and doctors at abortion clinics. Colker uses a legal fiction

a pregnant maleto situate a legal reality that ultimately disempowers women
by ceding reproduction to males.
In reading male pregnancy through the lens of disability theory, I am positing
a way of talking about repro-futurity outside of its heteronormative frame. Doing
so illustrates what happens when reproduction is removed from female biology
and shifted discursively onto other bodies. I am not saying that we should seri-
ously consider male parenting as equivalent to childbearing (as popular self-help
books seem to be doing lately). Rather, I am suggesting that to speak about male
pregnancy is implicitly to describe a close relationship between disability and
sexuality. We might say, adapting Stuart Hall, that disability is a modality through
which sex is lived.19 The castration complex, to take one example, involves align-
ing a missing limb with an attitude about male sexual potencyand, by exten-
sion, the lack of that potency in women. The fear of losing that limb, in Freudian
thought, translates into the fear of becoming a woman. Or as Dr. OConnor says
of Nora, [she is] one of those deviations by which man thinks to reconstruct
himself (Barnes 53). Historically, the merging of disability and sexuality has
occurred through the pathologizing of the invert as mentally defective and
by sexualizing the cognitively disabled person as a threat to the gene pool or as
sexual predator. The castrating of mental patients during the eugenic 1920s, dur-
ing which Nightwood was written, is only one version of a more pervasive form
of violent eugenics based around the control and monitoring of disability.
What Colker diagnoses as a problem with legal equality theory applied to
womens health also applies to contemporary lGbt politics, insofar as it is in-
vested in reproductive futurism. The new queer family values ethos, which Edel-
man critiques in No Future, utilizes the seemingly egalitarian claims for male
pregnancy and the integrity of the child to remove control of female biology from
women while reinscribing heteronormativity onto queer culture. As I have indi-
cated, cultural producers have been talking about pregnant men for some time,
albeit from rather different metaphoric vantages. The figure of the reproductive
male in modernism, as Dr. Schreber and Dr. OConnor illustrate, is a sign of the
ways that negative futures were being written around homosexual men. But we
need to distinguish between the two doctors by considering how their two au-
thorsFreud and Barnesfigured that futurity. For Freud, Schrebers paranoid
delusion that he must become a woman and become impregnated by God is a
form of homosexual panic, the result of Oedipal anxieties regarding Schrebers
father, who was a doctor, and his own doctor, Flechsig (this staging of homo-
sexual panic as doctor panic is one of Freuds less acknowledged contributions
Pregnant Men 141

to disability studies). According to Freud, Schrebers gender-bending fantasies of
impregnation and pregnancy are pathological, signs of mental illness that neces-
sitate institutionalization and analysis. For Barnes, on the contrary, Dr. OCon-
nor is comfortable as the old woman in the closet, whose wish for children and
knitting stand in stark contrast to Felixs rigid code of masculine filial piety or to
Noras rather bourgeois notion of lesbian monogamy. OConnors acceptance of
his oxymoronic position as female-male gives him a queer perspective on Noras
bourgeois normativityher desire to create Robin as a faithful spouseand on
her need to bow down to her own sexuality. Where Freud sees disability, Barnes
sees an alternate ability; where Freud sees deviant homosexuality, Barnes sees
a spectrum of sexual identities in a world facing a fascist and eugenically con-
trolled future.
In the beginning of this chapter I posed a question that pertains to the new
biopolitical order: if childbirth in women is nature, what is childbirth in men?
Is it, for example, disability? By framing the question this way, I want to com-
plicate the usual binaries of nature/culture, reproduction/production, that have
dominated sex roles for centuries and ask whether in a world in which repro-
duction is being increasingly divorced from gender the default of nature is not
culture but, rather, disability, read as the defamiliarizing condition for the spec-
tacle of bodily normality. We could complicate this chiasmic ratio further by
asking if the birth of the male child into self-consciousness is the ground of the
Bildungsroman, what happens when that birth is literalized in and through the
male body? Does this alter the ideological course of narrative as a recuperative
vehicle for family values and pronatalist futurity? What eugenics attempted to
secure within the heteronormative family, novels like Nightwood explode into the
biofuturistic scenarios of William Burroughs, Octavia Butler, Samuel Delaney,
and Margaret Atwoodand ultimately pop culture films like Junior.
noteS
1. On compulsory able-bodiedness, see Robert McRuer, Crip Theory 132. The use
of the term crip has become, in disability rights discourse, somewhat equivalent to
queer in gay and lesbian discourse. Like queer, the term crip rearticulates a term
of opprobrium to expose ableist assumptions about bodily normalcy. The term also im-
plicitly repudiates more technical or patronizing terms such as handicapped, wheel-
chair bound, or differently abled.
2. Socrates says to Theaetetus, My art of midwifery is in general like [that of female

midwives]; the only difference is that my patients are men, not women, and my concern
is not with the body but with the soul that is in travail of birth. And the highest point
of my art is the power to prove by every test whether the offspring of a young mans
thought is a false phantom or instinct with life and truth (Plato 150b). I am grateful to
Page DuBois for pointing out this reference to me.
3. As Ned Ward, an eighteenth-century journalist, wrote, on Festival Nights men
would cusheon up the Belly of one of the Sodomitical Brethren, or rather Sisters as they
commonly calld themselves, disguising him in a Womans Night-gown, Sarsnet-Hod,
and Nightrale, who, when the Company were met, was to mimick the wry Faces of a
groaning Woman, to be deliverd of a joynted Babie they had provided for that Pur-
pose, and to undergo all the Formalities of a Lying in (qtd. in Norton, Of the Mollies
Club).
4. For a thorough catalogue of male pregnancy figures, see Sherry M. Velasco, Male
Delivery 127.
5. I am echoing Jane Marcus, who argues that Nightwood is the representative mod-
ernist text, a prose poem of abjection, tracing the political unconscious of the rise of
fascism, as lesbians, blacks, circus people, Jews, and transvestitesoutsiders allbow
down before Hitlers truly perverted Levitical prescriptions for racial purity (231).
6. Velasco uses the phrase womb envy to refer to the various ways that males have
performed pregnancy, either through couvade, in which the male participates in a sym-
bolic childbirth with the mother, to more recent popular literature surrounding male
parenting. Jane Marcus uses the phrase to speak specifically of Dr. OConnor in Djuna
Barness Nightwood.
7. See Eve Kosofsky Sedgwicks chapter on Jamess Beast in the Jungle in The Epis-
temology of the Closet (182212).
8. Although he is described as a gynecologist whose primary work is the delivery of
babies, there is every indication that he is also an abortionist.
9. Jane Marcus provides a lucid summary of the ways that OConnor inverts the
Freudian analytic session (23150).
10. On Nightwood as a tale of urban slumming, see Scott Herring, Queering the
Underworld 15092.
11. Everything about Guido and Hedvigs life is fragmentary or fake. Guido found
the family portraits that he displays on his walls in some forgotten and dusty corner
and had purchased them when he had been sure that he would need an alibi for the
blood (Barnes 7). The originals for the portraits turn out not to be a royal couple at all
but a couple of actors.
12. Michel Foucault speaks of modernity as marking a shift from a culture based on
power expressed through blood and the sovereigns power over bodies, to a society
of sex, in which mechanisms of power are addressed to the body, to life, to what
causes it to proliferate, to what reinforces the species (History 147). Although he does
Pregnant Men 143

not discuss Nightwood, the novel is a brilliant, condensed version of Foucaults for-
mulation.
13. I have discussed the threat of infected blood with regard to hemophilia and AidS
in Concerto for the Left Hand: Disability and the Defamiliar Body 3557.
14. The precise date that Barnes began to write Nightwood is unclear. According to
Cheryl Plumb and based on entries in Emily Colemans diary, the origins of the novel
could have begun as early as 1927, the date of Barness breakup with Thelma Wood. It is
clear that she was well under way in 1932 when she was living at Peggy Guggenheims
summer residence in England, Hayford Hall.
15. Robert McAlmon reports that Barnes and Thelma Wood, the prototypes for
Nora Flood and Robin Vote, spent time in Berlin along with Berenice Abbott, Marsden
Hartley, and McAlmon and lived near Magnus Hirschfelds Institute for the Study of
Sexual Sciences. According to McAlmon, they encountered a number of transgender
individuals in the streets of Berlin, but Barnes did not accompany the group on its late-
night forays into what Deborah Parsons calls the fluid space of an itinerant and liminal
subculture (70).
16. Felix not only wears a monocle but also has sight only in one eye (Barnes 9).
17. Ato Quayson calls this anxiety aesthetic nervousness to refer to moments when
the dominant protocols of representation within the literary text are short-circuited in
relation to disability (15). The primary form that this takes is the interaction between
disabled and able-bodied characters, but this nervousness may extend to tensions re-
fracted across other levels of the text such as the disposition of symbols and motifs,
the overall narrative or dramatic perspective, the constitution and reversals of plot
structure, and so on (15). I find Quaysons phrase useful for speaking of how Barness
baroque prose style, while not specifically engaged with the depiction of a disabled
character, nevertheless annexes through verbal excess those qualities of the uncertainty
that attend nontraditional bodies.
18. Velasco notes that adding to the de-gendering of pregnancy is the return of vari-
ous forms of couvade in popular parenting literature with titles like Birthing Fathers:
The Transformation of Men in American Rites of Birth or Pregnant Fathers: Becoming
the Father You Want to Be (8).
19. Halls remark, paraphrased by Paul Gilroy, is that [race] is the modality in which
[class] is lived (qtd. in Gilroy 85). Gilroy, speaking of 2 Live Crew, adapts Halls com-
ment to say gender is the modality in which race is lived (85).

7
daVid seRlin
touCHing HiStorieS
Personality, disability, and sex in the 1930s
In May 2009, a reporter for the New York Times surveyed numerous incidents
of consensual hugging among adolescents at middle schools and high schools
around the United States. Framed by some parents, teachers, and psychologists
as a reaction to a lack of shared intimacy by an overscheduled, overmedicated
generation alienated from physical affection, hugging, according to one sixth-
grade teacher, gets to that core that every person wants to feel cared for, regard-
less of your age or how cool you are or how cool you think you are (Kershaw
p. 2, par. 8). By contrast, some school administrators interviewed for the article
stigmatized hugging as a threatening breach of social protocol; according to
one junior high school principal, [t]ouching . . . is very dangerous territory
(Kershaw p. 1, par. 13).
While the article ponders how and why certain forms of touching, such as
hugging, are perceived to be both harmless and dangerous, it remains silent on
the ontology of touch as a medium of interpersonal communication. Neither the
adolescents nor the teachers nor the parents interviewed for the New York Times,
for instance, were explicitly identified as members of populations for which
touch, including hugging, might sometimes carry a different set of meanings
those on the autism spectrum, for example, or the chronically ill, the elderly, or
people with mobility or other physical impairmentsthan it does for the average
teen. Although unfortunate, this omission is by no means surprising, given the
virtual invisibility in mass culture of differently abled people of any age, outside
of representations of heroic supercrips or intentionally oddball figures. Non-
normative children and adults are routinely exempted or excluded from being
shown engaged in voluntary physical intimacies with people other than family
members or caregivers and are almost never understood as possessing sexual
subjectivities in which they are agents of sexual pleasure. Why should one expect
it to be otherwise with disabled adolescents?
How might we think about touch as both a medium of communication and a
system of meaning making that engages with the erotic potential that inheres in
the experience of disability? In the early twenty-first century, the idea of touch
is often imbued with fear: touch as a permeable boundary of sexual danger or
inappropriate conduct or as an epidemiological vector of contagion. The forms
touch takesor does not takeoften function as markers of economic status
or the privileges that accrue to social hierarchies, such as those who are deemed
untouchable by their putative superiors. Yet these dominant modes of under-
standing touch render illegible the significance of tactility as a medium of com-
munication for disabled people, as well as for those who desire touch outside of
models of physical and sexual interaction normalized within modern culture.
The tactile, scholars such as the late Eve Kosofsky Sedgwick have argued, is in-
fused with complexities of performance, affect, and desire that confound cate-
gories of sexual orientation and gender (Touching Feeling).
Yet tempting as it may be to make universalizing claims for the inherent
queerness of touch, such an understanding of tactilitys instability must also be
understood as historically contingent and culturally specific. The architectural
theorist Juhani Pallasmaa, for example, has argued that vision and hearing in late
modernity are now the privileged sociable senses, whereas [senses like touch
are] considered as archaic sensory remnants with a merely private function, and
. . . are usually suppressed by the code of culture (16). Historically, however,
tactility has served a public function; indeed, touch as a contested medium of
communication in the public sphere has had a profoundly political nature. At
eugenics conferences during the 1930s, for instance, some exhibits featured dis-
plays of animal pelts, which patrons were invited to touch.
As Barbara Kirshenblatt-Gimblett has pointed out, these exhibits were cre-
ated with the intention of demonstrating that the ability to distinguish quality
146 David Serlin

Specialized Tests for Sense of Elegance: Quality in Fur, an exhibit featured at the Third
International Eugenics Conference (1932) and held at the American Museum of Natural
History, New York City. Reprinted with permission of the Harry H. Laughlin Papers,
Truman State University. Image reproduced courtesy of the Image Archive of the American
Eugenics Movement, Dolan dnA Learning Center, Cold Spring Harbor Laboratory.
fur through tactile means was an inherited trait passed down through superior
genes (2627). Here, touch was not only a socially sanctioned activity that valo-
rized good breeding but also one that was meant to convey its political distinc-
tion from the other senses. Like hugging in contemporary high schools, the evi-
dence of touch, in this example, was far from suppressed by the code of culture.
Rather, it was a highly regarded component of the code of culture, especially as
mediated by the putatively neutral truth claims of science. In this chapter, I ask
how we might think through the complexities of touch as a medium of commu-
nication by examining another case study, also drawn from the early twentieth
century, in which tactility was deployed as a category of scientific and sexual
knowledge that measured an individuals libidinal urges as well as his or her
ability to curb those urges in order to manage norms of social evolution.
In the second half of the 1930s, Carney Landis, an associate professor of
psychology at Columbia University, undertook a research project with his col-
Touching Histories 147

league, M. Marjorie Bolles, a researcher at the Psychiatric Institute of New York,
in which they conducted interviews with and analyzed the sex lives of one hun-
dred women between the ages of eighteen and twenty-five.1 These women had
been institutionalized prior to Landis and Bolless investigations and were iden-
tified as handicapped, in the parlance of the day, with a range of conditions clas-
sified under the broad rubrics orthopedic, spastic, cardiac, and epileptic.
Over the course of four years, Landis and Bolles interviewed the women about
their sex lives, sexual identities, and relationships to their bodies, and they pub-
lished the results of their study in 1942 under the title The Personality and Sexu-
ality of the Physically Handicapped Woman.
Of Landiss and Bolless reputations, and the impact of their study on either
sexology or research on the sexuality of disabled people, virtually nothing has
been written. In Landiss obituary for the American Journal of Psychiatry in 1962,
William A. Hunt observed that the influence of Landiss work probably is likely
to have been more widely felt among his generation than will be noted for his-
tory (509). Landis and Bolless work has not fared much better even under late-
twentieth-century scholarship; according to one prominent historian of sexology,
their work on disabled womens sexuality should be noted more for its intent
than for its results (Bullough 164). My goal in examining Landis and Bolless
work, particularly their research project on the sex lives of disabled women, is
not intended to serve as a recovery project in the classic academic sense: it is not,
in other words, a campaign to recover a marginal or obscure figure in order to
resurrect his or her importance and thus reshuffle the hierarchies of value that
constitute historical knowledge. Instead, an examination of The Personality and
Sexuality of the Physically Handicapped Woman enables us to grasp anew the
ways in which touch and tactility functioned in the early decades of the twenti-
eth century, both for the researchers and research subjects. By paying attention
to the role of touch in the womens narratives and its corresponding significance
(or lack thereof) in Landis and Bolless observations, we gain insight into forms
of self-expression and subjectivity that, in addition to struggling against clinical
prejudices or hierarchies of meaning, are ones that we tend not to associate with
histories of either disability or sexuality.
While the topic of disabled womens sexuality was unique among studies con-
ducted by U.S. psychologists and sex researchers in the 1930s, The Personality and
Sexuality of the Physically Handicapped Woman is a rather familiar quantitative
study that reflects the predominant models used to conduct sex research during
the era. Landis and Bolles were contributing to a cottage industry that had been
148 David Serlin

Tables of Vital Statistics. These tables distill important background information for the
disabled women involved in the study: the institutions where Landis and Bolles located
their subjects, how their subjects intelligence was rated, and the age at which their subjects
handicap developed. From Landis and Bolles, The Personality and Sexuality of the
Physically Handicapped Woman (New York: Paul B. Hoeber, Inc., 1942), 147. Reprinted
with permission of Lippincott Williams & Wilkins.
149
in full production mode for nearly two decades. In the furtive and well-funded
research period following World War I, American psychiatric and sexological re-
searchers collected and analyzed voluminous quantities of sexual data on both
normal and abnormal American women, including studies such as Sexual
Behavior and Secondary Sexual Hair in Female Patients with Manic Depres-
sive Psychoses (published by C. E. Gibbs in 1924) and Factors in the Sex Life of
700 Psychopathic Women (published by Francis M. Strakosch in 1934). Katherine
Bement Daviss study, Factors in the Sex Life of Twenty-Two Hundred Women,
published in 1929, was a landmark volume in which Davis asked women to talk
about not only their sexual practices but also about their sexual relationships
to themselves. The degree to which Daviss study focused on female masturba-
tion (and, sadly, its apparently precipitous decline among women over thirty) is
a minor miracle of interwar American ethnography, cataloguing the ingenuity
with which girls and young women in the early twentieth century found ways to
turn everyday experiences into opportunities for autoerotic gratification.
Significantly, Daviss study is distinguished from the work of other American
sexological researchers of the era in that she collected her information through
oral histories, which permitted her research subjects to identify their sexual sub-
jectivities without necessarily defining themselves according to clinical or con-
ventional categories of sexual identity. This was a radical break from the seem-
ingly rational strategies used by contemporary researchers to define desire and
deviance. As Michael A. Rembis has shown, for instance, in his study of teen-
age girls institutionalized as juvenile delinquents in Illinois in the early twenti-
eth century, putatively objective methods of measuring gender or sexual de-
viance were regularly deployed to generate evidence that seemed to corroborate
supposed truths about questionable or nonnormative bodies. As Heather Lee
Miller has argued, sexologists, psychiatrists, and medical professionals during
the early twentieth century were committed to quantifying the social behaviors
and sexual characteristics of women, such as prostitutes and lesbians, who fit into
recognizable categories of sexual and gendered deviance. Taxonomies were cre-
ated through the use of physical examinations that involved measuring, compar-
ing, and cataloging varieties of breasts, clitorises, labia, nipples, and pubic hair
those body parts thought to be morphologically correlated with deviance. As
womens sexual desire and behavior became a site of anxiety for society at large,
Miller writes, and as women served to participate in such gender transgressive
behaviors as feminism, professional work, prostitution, and same-sex behavior,
[sexologists] . . . began to read female bodies for anatomical evidence of sexual
150 David Serlin

desire and behavior (79). Whether she chose under examination to recall her
sin or not, Miller observes, a womans genitalia revealed her confession to the
sexologist, her confessor (80), thus revealing the tensions surrounding tactility
in a professional setting where touch exists both as an extension of the clinical
gaze and a facilitator of social discipline.
Such examinations also suggest that, long before the era of medicalizing the
sexually aberrant or the physically nonnormative body, tactility played a central
role in producing hierarchies of social distinction. The French historian Alain
Corbin, for example, has argued that the ascent of modernity helped to accel-
erate the process by which those who routinely experienced bodies on a tactile
basis were distinguished from those who were able to distance themselves ex-
perientially from the bodies of others through economic privilege, social mo-
bility, or political stature. Before this rupture, Corbin argues, village dwellers
and their urban counterparts alike experienced physical difference, illness, and
death as part of a shared continuum of living and working together. With the
rise of industrial capitalism, professionalization, and forms of expert knowl-
edge, economic and social distinctions increasingly emerged between those who
engaged with the full range of somatic experiences and those who employed
manual laborers, appointed policemen, hired doctors, and dispatched missionar-
ies and church representatives to do work for them. To touch or not to touch, to
be touched or not to be touched: for Corbin, these experiential categories reflect
powerful hierarchical structures that increasingly identified seeing and hear-
ing and even tasting as intellectual, superior, and refined, while touching and
smelling remained connected to the physical with its potential association with
the dirty and stigmatized. Disabled bodies belonged to the latter category; their
relationship to touch not only exposed their physical vulnerability and there-
fore their dependence but also challenged post-Enlightenment moral and politi-
cal philosophies that privileged bodily autonomy and self-control as markers of
civilization.
Katherine Bement Daviss decision to foreground self-narration among her
informants marked a significant break from the diagnostic techniques that pre-
sumptively linked physical differences with sexual differences that could be visu-
ally verified. It also provided the framework within which Landis and Bolles
began to conceptualize their work. The Personality and Sexuality of the Physically
Handicapped Woman might be regarded therefore as a missing link that com-
pletes a genealogical arc that emerges in Daviss work in the 1920s and is fulfilled
in Alfred Kinseys work in the 1940s and 1950s. But it is important to recog-

nize that Landis and Bolles did not undertake their study to contribute to an
understanding of disabled womens sexuality per se. They positioned themselves
neither as explicit advocates for disabled people nor as harsh critics of the indi-
viduals or institutions that cared for them. Disabled women werent recognized
as belonging to that group of self-possessed young women who, like the nondis-
abled women interviewed by Davis, could narrate their own sexual subjectivi-
ties. Disabled women were understood to constitute a subset of women whose
frustrated sexual subjectivity, if they could even own such a thing, was evidence
of the absence of what Freud called the sexual moment, an originary or pri-
mary insight into ones sexual self that allows one to narrate ostensibly normative
heterosexual desires. For Landis and Bolles, disabled women were useful to the
fields of psychology and sexology because they were perceived to be voiceless,
sexual tabulae rasae whose social alienation confirmed psychological theories
of psychosexual development and sexological theories that correlated sexuality
with the truth of the self. Which population, after all, would be better suited to
demonstrate the effects of social ills on psychosexual development than the dis-
abled and disabled women in particular?
Landis and Bolles, like other researchers in this era, were fundamentally in-
fluenced by the presumption that there was an a priori linkage between evidence
of physical disability and expressions of neurotic behavior. They argued emphati-
cally for a correlation between hyposexuality (that is, a subnormal diminished
sex drive or the absence of one altogether) and psychosexual immaturity, attrib-
uting some of it to the young womans lack of social engagement but much of it
to the perception that disabled women were socially maladjusted and neuroti-
cally inclined. Throughout their text, Landis and Bolles make explicit links be-
tween their research subjects personalities and their respective sexual histories
(or lack thereof), the inner mechanisms of which they believed were funda-
mental to understanding disabled womens sexuality in relation to existing cate-
gories of psychopathology that were applied, with equal vigor, to nondisabled
women, who were regarded for all intents and purposes as physically normal if
also psychologically neurotic. The category of the neurotic, charged with late
nineteenth-century conceptions of the assault on the body by the pace of mod-
ern life, was typically gendered female since it played directly into the periods
understanding of womens hysteria as rooted in their essentially vulnerable con-
stitutions. This is a legacy that continued, as Jonathan Metzl has argued in his
book Prozac on the Couch, well into the 1990s with the feminization of depres-
sion and mood disorders in both clinical and popular discourses.
152 David Serlin

Clearly, Landis and Bolless study was building upon and responding to con-
ventions of early twentieth-century sexology research on disabled women and
their neurotic nondisabled counterparts that had been firmly in place for some
time. But one could argue that contemporary forces also shaped their study.
Building upon the reformist zeal of the New Deal during the second half of
the 1930s, Landis and Bolles imagined this marginalized and stigmatized group
of women as potential beneficiaries of a social and economic system in which
they might eventually be included. They believed that, like many who underwent
physical rehabilitation to become productive workers and citizens, their disabled
interviewees might thrive if the researchers could, by recalibrating what they
perceived as self-absorbed, narcissistic dimensions of their subjects psyches,
transform these women into dynamic, extroverted, altruistic personalities. For
Landis and Bolles, the key to this transformation, which promised to produce
economically and socially productive individuals, was the role of personality in
neutralizing the stigma of disability.
Personality studiesthat is, theories of personality in relation to psychologi-
cal development, as well as individual studies of enigmatic or complicated per-
sonality typesheld a special aura in scientific circles in the United States during
the early decades of the twentieth century. These studies came on the heels of
the first published translations of Freud into English during the early twentieth
century and the first formal studies of propaganda, advertising, and the cult of
personality by communication researchers such as Paul Lazarsfeld and Walter
Lippmann. Among psychological researchers, the 1920s and 1930s galvanized
enormous support for what were called personality inventories, large-scale
quantitative analyses of personality traits, typically conducted through ques-
tionnaires in which individuals were asked to self-report on their own cognitive
experiences and behavior patterns. Initially developed to screen out so-called
mental defectives from society at large, these studies were later adopted by pub-
lic relations firms, political pollsters, advertising agencies, and even the armed
forces during World War II to identify those with so-called antisocial tendencies.
These categories speak volumes about the periods compulsive commitment to
civic training as a rational instrument of social control.
Such personality inventories were not merely the terrain of psychological or
sexuality researchers. As Joel Pfister has argued, during the 1920s and 1930s the
diagnosis of certain forms of neurosisparticularly self-absorption and narcis-
sismwas routinely decoupled from diagnoses of insanity or the eugenic cate-
gory of feeblemindedness. Indeed, as Pfister points out, during the 1920s the

label of neurotic held tremendous cultural capital. Through the mass media
allure of popular films, Broadway plays, serial radio dramas, celebrity magazines,
and romantic novels, Pfister argues, the neurotic personality type captured the
imagination of the public and became intertwined with a glamorous upwardly
mobile profile, a vision of leisurely self-aggrandizement that long predates the
contemporary era of celebrity rehab. For researchers like Landis and Bolles, per-
sonality studies were an easy interface with sexological studies, since the sources
of both neurosis and sexual deviance could be definitively located in the psyche
through the act of gathering and interpreting self-narrations. As Daviss work
had demonstrated, sexual subjectivities of various kinds could be classified and
systematically deployed in order to make generalizations, which could then be
applied to individuals or groups.
Landis and Bolles built upon these conventions of personality studies through
the use of controlled interviews, Rorschach inkblots, and medical history in-
takes. These diagnostic tools, which still had an aura of novelty in the 1930s,
dovetailed nicely with a topic that attracted numerous social psychologists as
well as industrial psychologists: the rehabilitation of the disabled for the pur-
poses of social integration and social productivity. After World War I, civic train-
ing in its various iterations had included the rehabilitation and reformation of
the personality, often in accordance with expectations of economic productivity
and social civility. In 1940, for example, psychological researcher Theodora M.
Abel observed that subnormal girls may make a successful industrial adjust-
ment provided they obtain job satisfaction, a desirable first job, and stable hours
(qtd. in Dorcus and Case 486). Writing in 1941, Rudolph Pintner asserted that
in the education and training of physically handicapped persons a personality
concept must be built up which will make it possible for them to interact freely
with physically normal people. While the physically handicapped must view the
limitations imposed by their handicaps objectively and realistically, there must
be no injury to their self-esteem. This will only be possible if the physically nor-
mal persons in the environment of the handicapped react to them understand-
ingly but without maudlin sentiment or morbid curiosity (Pintner, Eisenson,
and Stanton 16; emphasis added).
Yet labor historians tell us that in the predominantly industrial economy of
the 1930s, personality was not necessarily a factor, minor or otherwise, in em-
ployment decisions, let alone opportunities for performing acts of civic duty. Ac-
cording to Pintner himself, even those crippled laborers who were able to find
work during the Depression typically performed jobs in which having an extro-
154 David Serlin

verted personality, or a discernable personality type of any kind, was a negligible
component of ones work identity. In a study conducted at the nadir of the De-
pression in 1932, 70 percent of jobs held by disabled workers were unskilled, and
only 6 percent were skilled. This suggests that the emphasis on personalityits
capacity to win friends, influence people, and earn cash, as conceived by Dale
Carnegie in 1936was to some degree a fabricated criterion. Despite this, Pint-
ners exploration of the psychological profiles of disabled men and women pro-
vides insight into the periods construction of those with disabilities, which
ranged from physical disabilities produced by illness or accident to chronic con-
ditions including epilepsy, diabetes, encephalitis, and tuberculosis, the etiologies
of which Pintner believed to be responsible for producing particular social types
whose personalities were bound up in the very nature of the disease. Pintner
characterized the epileptic, for example, as self-centered, constantly demanding
his own way and violently resenting interference. He is subject to outbursts of
temper and is often moody and peevish (Pintner, Eisenson, and Stanton 3034).
Such conclusions about the relationship between physical disability and de-
fects in personality and the possibilities of rehabilitation were reinforced in much
of the prevailing psychological literature of the period. Writing in 1937 about
neurotic tendencies in crippled girls, Betty Rosenbaum argued that as [dis-
abled] girls grow older and mature emotionally and physically, [they] are de-
terred in making normal social adjustments because of their handicaps [and]
tend to become more and more introverted and neurotic (428). Rosenbaums
study relied heavily upon the Thurstone Personality Schedule, one of the most
widely used diagnostic tools among social psychologists in the United States
during the 1930s, which enabled Rosenbaum to compare the personalities of the
crippled girls with those of college-age normal girls.
That Rosenbaum as well as Landis and Bolles used young women from the
New York metropolitan region as a research population suggests how important
the urban setting was to psychology researchers understanding of geographical
difference as an adjunct to social and physical difference. In the interwar period,
when the city was studied as the primary locus of modern social organization
(and, for scholars like Robert Park and the urban sociologists at the University
of Chicago, the genesis of modern social ills), urban environments and the neu-
roses they were believed to generate were central concerns for psychologists as
well as industrial managers and economic theorists. Urban subjectivities enabled
researchers to investigate the ways in which modernity and neurosis were dialec-
tically constituted, with vice, crime, sociopathic behavior, and sexual deviance

Masculine Protest: Objective Scale. Scales such as these were typical of psychosexual
profiles of mid-twentieth-century psychologists, emerging from the fear that modern
neuroses might upend conventional (and deeply heteronormative) understandings of
gender roles. Here it is used to indicate that some proportion of the subjects in the study
showed signs of nonnormative gender behavior, thus underscoring the significance of the
concept of masculine protest. From Landis and Bolles, The Personality and Sexuality of the
Physically Handicapped Woman (New York: Paul B. Hoeber, Inc., 1942), 137. Reprinted with
permission of Lippincott Williams & Wilkins.
serving as somatic manifestations of the ill effects of the urban environment on

the fragile bodies of the most vulnerable populations.
Historians such as Pamela Haag have argued that during the 1920s and early
1930s the lauded goal of making socially and economically productive adults
depended on teaching a generation of young men and women how to be extro-
verted, how to avoid isolation, and how to connect and interact with others for
the purposes of social solidarity (and, one might cynically imagine, for the pur-
poses of consumer identification). Normative understandings of personality,
156 David Serlin

Haag asserts, were mediated through advice literature and popular self-help ori-
ented texts that traveled in circuits of amateur and semiprofessional knowledge
production. These goals depended upon developing ones capacity to tell ones
own story, presuming that one had a story to tell about ones self: a story that
included a physical history, an account of social obstacles one had overcome, a
projection of self-esteem, and a sense of social belonging. Furthermore, as Haag
observes, during the 1920s self-narration became the predominant form for ex-
pressing not only ones personality but ones sexual history: the unnatural and
class-specific artifices of narration and self-stylization emerged as tools by which
a woman might invent or earn her sexual subjectivity, by distinguishing it both
from the commodified sexuality of the prostitute or the gold digger and from the
unconscious sexuality increasingly ascribed to the vulgar classes (165). Haags
insight suggests that a younger generation of women built personality profiles
to distinguish their desires from those uncouth women who expressed their
sexuality through primitive sexual urges.
Landis and Bolless interviews, by contrast, were not designed explicitly to en-
dorse the promotion of disabled womens personality profiles or to champion the
centrality of their sexual histories to psychological growth. Their interviews were
anchored in the objective pursuit of pure research; they implied that there was
something valuable to be gained from studying women whose social experiences
were perceived to be so thoroughly excluded from the typical currents of social
life. But within the often state-sponsored physical rehabilitation schemes that
these women inhabited, the prospect of social rehabilitation, clarified through
the techniques of self-possession and self-narration, was part of the missionary
zeal with which sexologists and psychiatrists plied their trade in the 1930s.
Sometime after World War II, Landis deposited his and Bolless complete data
sets for The Personality and Sexuality of the Physically Handicapped Woman in the
archives of what is now the Kinsey Institute for Research in Sex, Gender, and Re-
production at Indiana University. Alfred Kinsey, its director, would soon become
famous for publishing the results of his own research, using interview techniques
similar to those of Landis and Bolles, which he had developed during the 1940s
with his own subjects. Landis and Bolless raw data, when compared with the
published versions of their study, make it evident that the researchers omitted a
large number of individual narratives from their final conclusions. Landis and
Bolless study seems, on the surface, rather unflinching in its characterization
of disabled women who are far more intimately familiar with their bodies than
one might have imagined at midcentury point. For example, in one of the tables

Autoerotic Practices (Masturbation). One would have to infer from such research that the
vast majority of disabled women in the New York City metropolitan area during the late
1930s constituted a masturbation-free population. From Landis and Bolles, The Personality
and Sexuality of the Physically Handicapped Woman (New York: Paul B. Hoeber, Inc., 1942),
134. Reprinted with permission of Lippincott Williams & Wilkins.
appending their text presenting data on autoeroticism, Landis and Bolles give
the impression that the vast majority of their informants either rejected mastur-
bation outright or practiced it so infrequently that it was, generally speaking, a
negligible component of their sexual subjectivities. From such a table, one might
be tempted to extrapolate that disabled women in the New York metropolitan
area constituted a mostly masturbation-free population.
If one examines Landis and Bolless original notes, however, the provocative
character of the qualitative data that produced these quantitative conclusions tell
a different, more richly nuanced story. For example, when one informant was
asked whether she experienced physical pleasure, she stated that of her earliest
158 David Serlin

sexual memories the only thing I remember is sliding down the banister. I still
like it, and started again about five years ago. She also reported: I have had ex-
periences where I had my legs crossed, someone plumped themselves into my
lap and I had a very nice sensation. [I was] about 15 or 16. Landis and Bolles
rated this informant, a young adult when she was interviewed in the late 1930s,
as someone who never masturbated, and the details she herself provided were
omitted from the final version of their book. Another interview subject, diag-
nosed with cardiac arrhythmia and living in an institutional setting, described
sex play with a female neighbor who often stayed with me because she loved
my home. We were very intimate and she purposely missed trains to be with me.
[She] [d]isplayed quite a bit of physical affection. . . . I remember we were so free,
Id take a shower and then I bathed her. Landis and Bolles rated this subject also
as someone who did not masturbate, proving that quantitative analysis makes
little or no room for cohabitations of the bathtub or shower. In a slightly more
guarded and hesitant interview by a different research subject, another young
woman recalled that, as a young girl, I enjoyed remaining in the bathroom for
long periods of time, feeling the warmth comfort me. I found great pleasure in
being nude, she remembered, but then I never looked at myself in the mirror.
The hesitation coming from this particular research subject is painful to con-
template, as it suggests a measure of emotional repression and psychic control
enforced not by visual or tactile pleasure but by external standards of visual and
tactile disidentification generated by others and applied against ones self. As yet
another informant told Landis and Bolles, There was a time when I did not like
anyone to touch me. I could not stand it. The nurses used to do it a great deal
when I first came here. I shrank from it. Now this [has] completely changed . . .
since coming to the hospital here.
In noting that Landis and Bolles excluded these insights from their subjects
self-narrations, I am not suggesting that the researchers were deliberately strip-
ping their informants of complex sexual subjectivities by removing their messy
or rough edges to fit conventional ontologies of sexuality. Instead, one could ar-
gue that these young women had sexual narratives that were far more confound-
ing than anything Landis and Bolles understood how to grapple with, especially
given the Freudian narratives that so structured sex research for the first half of
the twentieth century. The narratives gathered by Landis and Bolles conveyed
subjectivities consummated not through quantifiable acts of conventional (and/
or heterosexual) penetrative sex or through recognizable patterns of oral-genital
or digital-genital contact. Instead, they were subjectivities consummated through

unquantifiable acts of touch: self-touch, being touched through ones clothes, or
touching ones erogenous zones by rubbing against an object. In the 1930s, such
practices of touch may well have been viewed as provocative Freudian pecca-
dilloes of polymorphous perversity. But they also may have been regarded as
terra incognita for researchers like Landis and Bolles, who were trained in the
field of psychiatry rather than that of sex research. That sexological studies con-
ducted in the early twentieth century would be, with few exceptions, entirely and
hopelessly complicit with heteronormative social scripts is wholly unremarkable.
What seems remarkable, however, is the degree to which forms of sexual sub-
jectivity are being constructed in these self-narrations, whichespecially when
they are mediated primarily through acts of touchremain largely irretrievable
as recognizable social practices with definable features. Indeed, they seem to be
confounding alike to the early twentieth-century researcher and to the early-
twenty-first-century historian trying to grapple with a contemporary analysis of
such practices.
In an essay on the queer dimensions of love and affect, Lauren Berlant has
argued that many of the tropes or conventions of heterosexual romance are more
normalizing, in terms of the truths about the self that they produce, than the
tropes or conventions of heterosexual desire. As Berlant writes: To the degree
that gay and lesbian thoughts and desires threaten to impair the comfort people
have learned to find in the formal inevitability of their intimate leanings, the re-
sistance to whats queer about them can be read not just as a symptom of nor-
mativity in general, or as a sexual defense, but also as a fear of what will happen
when those forms are separated from loving (448; emphasis in original). To this
end, touch could be regarded as an intersubjective form of communication that
has the capacity to challenge the formal inevitability typically ascribed to pat-
terns of heterosexual norms and sexual orientation in general. Touch disrupts
these patterns by introducing forms of interaction and physical presence that
may be shaped by normative sexual scripts but that, in their multivalence and
unpredictability, exist to a large degree outside of conventions of the normative.
Indeed, the public presentation or performance of certain perceived forms of
romantic tactility (such as holding hands, grasping hands, touching hands, and
so forth) are forged not necessarily in terms of sexual orientation but in terms of
the complexities of social relations. One could make the same argument about
the ways in which characteristic and identifiable forms of touchstroking, pet-
ting, rubbing, holding, massaging, fingering, tracing, fisting, inserting, encir-
cling, slapping, grasping, poking, and exploring with the fingertipsare physi-
160 David Serlin

cally performed more within the complex interactive dimensions of tactility than
they are within established conventions of sexual orientation.
Among early sexologists, touch was perhaps regarded as a window into the
mechanisms of compulsory heterosexuality, mechanisms that must be institu-
tionalized in ways that make them appear enduring and natural. As Patrick White
has described, well through the late twentieth century sex education manuals di-
rected at blind adolescents were modeled on heterosexual scripts that policed the
potentially queer boundaries of the tactile. Yet the affects and gestures that we use
in our engagements with the world are routinely channeled by cognitive forces
that exceed the explanatory power attributed to the institution of heterosexuality.
As Sara Ahmed has argued, this is not simply about compulsory heterosexuality
or compulsory forms of heteronormativity; rather, it is about compulsory forms
of phenomenological normativity that orient the body into predictable channels
of communication that can be directed, shaped, and controlled. In this way, cer-
tain possibilities of subjectivity are foreclosed in deference to others. Orientation
here is more akin to the notion of what urbanists call an orientation device: a
semiotic signifier, such as a building or statue, which registers both individual
and collective subjective impressions. As a high school freshman observed in
the New York Times article with which I began this chapter, If somebody were
not to hug someone, to never hug anybody, people might be just a little wary of
them and think they are weird or peculiar (Kershaw p. 1, par. 12). Here hugging
is regarded as a compulsory form of social interaction, weighed down with all
the expectations of normativity exerted by other institutionalized forms of social
engagement. Perhaps this is why tactility is perceived as inherently dangerous
for both the person who touches and the recipient of that persons touch. Even if
we acknowledge the dual nature of touch, as a message simultaneously sent and
received, the power relationships involved are nonetheless unclear and messy.
This is perhaps one reason why, in the New York Times article on hugging, young
people are sometimes cast as vulnerable objects of touch rather than empowered
agents in control of their own touching.
The critical examination of the evidence of touch (and its inadvertent dis-
avowal) in Landis and Bolless study helps to reconstruct the power relations
that inhere in histories of disability and sexuality, as well as the sensuous and
experiential dimensions of history more broadly. It provides multiple concep-
tual bases for thinking about how to historicize certain subjective dimensions
of phenomenological experiencesuch as tasting, touching, smelling, feeling,
hygiene, and affectthat do not entirely depend on able-bodied status. And it

poses a challenge to conventional methodological approaches to the sensorium
that either privilege the visual or subordinate smell, taste, and touch, the so-
called lower senses, to the rigors of the rational mind. As Ahmed writes, his-
tory cannot simply be perceived on the surface of the object, even if how objects
surface or take shape is an effect of such histories. In other words, history can-
not simply be turned into something that is given in its sensuous certainty, as
if it could be a property of an object (41). For the young women who served as
research subjects for The Personality and Sexuality of the Physically Handicapped
Woman, touch served to reveal the institutional and social pressures exerted
upon them to uphold the conventions of heterosexual normativity. But it also
served as a form of resistance to the hegemony of heteronormativity. The forms
of subjective experience and individual history produced through these womens
physical bodies highlight the need for scholars of sexuality and disability to think
about touch not merely within reactive histories of social domination or sexual
discipline but to think about touch as a productive entity. In other words, in what
ways might we understand sexuality and disability differently, either together or
individually, if we regard touch as a psychic, experiential, and epistemological
category through which subjective understandings of ones body and ones self
in the world are represented, refracted, and made flesh?
noteS
Early versions of this chapter were presented at Kings College London; Northwestern
University; the University of Pennsylvania; the University of Toronto; the University
of Washington, Seattle; and York University, Canada. Thanks to Will Smith for his re-
search assistance and to Shawn Wilson of the Kinsey Institute for Research in Sex, Gen-
der, and Reproduction at Indiana University, Bloomington, for help with the Carney
Landis Collection. For superb comments on early drafts, thanks to A. M. Blake, Els-
peth Brown, Hctor Carrillo, Steve Epstein, John Howard, Val Hartouni, Regina Kun-
zel, Heather Love, Mara Mills, Natalia Molina, Chandra Mukerji, Kathy Peiss, Brian
Selznick, Marc Stein, and Crispin Thurlow. Special thanks to Robert McRuer and Anna
Mollow for editorial guidance and abiding faith.
1. All references to case histories are taken from files, dated 193437, located in the
Carney Landis Collection, deposited at the Kinsey Institute for Research in Sex, Gen-
der, and Reproduction, Indiana University.
162 David Serlin

III
SPaCeS
8
nicole MaRkotic and RobeRt McRueR
leading witH your Head

on the borders of disability, sexuality, and the nation
A classic team sports film rivalry consists of setbacks and springboards, mo-
ments of high drama and suspense punctuated by moments of release (laughter
and tears), individual accomplishments lodged within a larger frame of homo-
social and masculinist team spirit, and personal stories from off the playing
field that are later carried by viewers to the playing field. In 2004, for instance,
Gavin OConnors maudlin Miracle recreated (for Walt Disney) the so-called
Miracle on Ice, the 1980 Olympic battle between the United States and the USSR
hockey teams in Lake Placid, New York. Such films appeal, melodramatically, to
viewers hearts over their heads; indeed, sports depicted in mainstream film
is a primary arena in which unbridled nationalism is celebrated rather than re-
garded as dangerous, since not displaying patriotism around sports usually in-
dicates a character failing.1 Nationalities often clash in sports, and viewers emo-
tions are expected to soar when the assumed home team of the USA triumphs.2
Miracle constitutes a textbook example of the cultural work performed by sports
film rivalries that are played out at the level of the nation (especially when the
nation in question is America).
The focus of our chapter is a sports film rivalry of a seemingly different ilk,
the documentary Murderball, by filmmakers Henry Rubin and Dana Shapiro,
released in 2005a documentary that presents the contact sport of quad rugby
(developed in Canada in 1977), colloquially known as murderball. Nominated
for an Academy Award for Best Documentary Feature, and highly acclaimed in
numerous Audience Awards (including Best Documentary Feature at the Sun-
dance Film Festival in 2005 and Best Feature at the Full Frame Documentary
Film Festival in 2005), Murderball is one of only a few disability films that show
athletes succeeding not in spite of, but because of, their disabilities.3
A classic academic or intellectual rivalry, we might say, following what
Eve Kosofsky Sedgwick and Adam Frank call the prevailing moralism of cur-
rent theoretical writing, puts forward a vacillation between two poles, neither
of which is the clear victor: kinda subversive, kinda hegemonic (5). What is
merely a vacillation in current theoretical writing often becomes a battle in peda-
gogical settings: classroom debates about particular texts can generate teams
defending or advancing one or the other of these two poles, as a given text is
lauded or rejected as totally subversive or totally hegemonic. Teach Murder-
ball to a classroom full of generally thoughtful students, and youll see what we
mean. The film responds critically to some of the worst disability stereotypes and
offers up what Rosemarie Garland-Thomson has called, in an analysis of Murder-
ball, fresh, feisty stories about disabled shapes and acts (Shape 114). Because
the film both invokes and challenges disability stereotypes, half the class will
find it subversive for this reason and will, perhaps, turn to the graphic discus-
sion of sexuality in the center of the film as evidence:4 the film certainly chal-
lenges conventional images of disability as asexual; the film arguably challenges
notions of what sex itself might be. Speaking openly about their sexuality, the
athletes in the film generally focus on nonnormative practices: penile-vaginal
heterosexual intercourse solely focused on a male orgasm has no prominent
place here; the conversation is, rather, on autoerotics or on heterosexual sex that
could be interpreted as more focused on female pleasure. The topics are mas-
turbation and cunnilingus, and in the very broad sense of the term (although
apparently none of the films subjects would rest comfortably beneath the sign),
the sex in the film is kinda queer. The other half of the class will argue that, on
the contrary, Murderball represents a patriarchal, heteronormative, hegemonic
masculinity, with bombastic male bravado in regard to sexual conquest, homo-
phobia, and so forth. In this chapter, finding ourselves inescapably in the orbits
of both kinds of rivalries, the sports film and the academic, we cannot always
resist assigning scores. Even as we register decidedly hegemonic aspects of the
166 Nicole Markoti and Robert McRuer

film, we shall nonetheless consider some of the sexual and disability pleasures
of the film. Yet ultimately, we are more interested in the materialization of other
libidinal investments alongside and even through those pleasures, particularly
the materialization of a libidinal investment we here call crip nationalism. We
use this term to mark an emergent, neoliberal form of nationalism that works
in and through contemporary forms of disability identity, community, and soli-
darity.5 Indeed, we argue that Joe Soares, who for most of the film is head coach
of the Canadian team (even though he grows up in an immigrant U.S. family),
becomes the ideal extreme coach for the crip nation. In addition, we argue
that the homosocial narrative generated through Mark Zupan (perhaps the most
well-known figure from Murderball) positions him as an ideal player for the crip
nation (even thoughand perhaps especially becauseSoares and Zupan are
ostensibly rivals for the duration of the film).
In suggesting that Murderball incorporates a crip nationalism, we are try-
ing to avoid what we term disability culturalism. Instead, we locate the film
within larger transnational political, cultural, sexual, and academic economies.
Crip nationalism, given that it is not founded on the assumption that disability
is always and everywhere excluded or marginalized, is a strategy that, in Mar-
grit Shildricks terms, contests and queers the very separation of self and other
that underpins the foundations of Western subjectivity (Dangerous 142), even
as, we will argue, it generates other forms of dispossession. An analysis that gets
caught up in whether a narrative such as Murderball is or is not kinda subver-
sive or kinda hegemonic in regard to the disability identities and cultures it
represents dislocates the text to an idealized space in which audiences can (sup-
posedly) recognize disability, masculinity, athleticism, and even sex, but not the
labor that continually produces or upholds the national contexts in which they
currently function. The nations that Soares and Zupan represent or coach ap-
pear, at various points, to be the United States or Canada, but the phantasmatic,
spectacularized crip nation engendered through that representation bears little
relation to either neoliberal state, even as it is ultimatelyas we shall demon-
stratequite useful to both.6
Culturalism generally, including disability culturalism and what Canadi-
ans officially deem multiculturalism, ghosts complex questions about gender,
sexuality, class, labor, and militarization. Rereading Walter Benjamins famous
assertion that there has never been a document of culture which is not at one
and the same time a document of barbarism, Gayatri Chakravorty Spivak insists
that a culturalism that disavows the economic in its global operations cannot
Leading with Your Head 167

get a grip on the concomitant production of barbarism (168). In this chapter, we
ask what it would mean to apply Benjamins and Spivaks words to Murderball.
Doing so will entail, for one thing, exceeding the project of simply classifying
particular cultural representations of disability as positive or negativeor
relatedly, of assessing them in terms of whether they advance or impede a uni-
tary disability movement. Benjamins dictum, insisting as it does that there has
never been a nonbarbaric document of culture, does not allow for what Frederick
Powell passingly refers to as an agenda of progress (197). We shall therefore at-
tempt to put forward a reading of the film that, to use Spivaks words, gets a grip
on the production of barbarism. That is, although labor and economic relations
are not foregrounded in Murderball, we will bring those relations to bear on our
reading of it.
We know a few things about the flow of bodies back and forth across the U.S.
and Canadian borders: both countries rely economically on immigrant labor; the
workers in question are expected to be physically able (for domestic work, farm
work, construction, and so forth); and they are heavily surveilled as they cross
into each country and, while they are present, as guests or aliens. In Canada
(mostly in Alberta, but also parts of Ontario), migrant workers from south of the
even more southerly border or borders (workers from Mexico, South America,
and even as far as Fiji) are flown in on restrictive work visas to labor at de-
manding short-term jobs. They pay into social assistance programs from which
they are not eligible to benefit. Various restrictive work visas have likewise been
considered and implemented in the United States. And hundreds of thousands
of workers cross into the country in ways that authorities deem illegal (often
facing great physical danger and the possibility of death, particularly in desert
climates). We know, then, that ideal bodies are desired for undesirable labor
and that those bodies cross borders all the time, even as their movements are in-
creasingly policed. We know as well that the work these bodies perform often is
quite literally disabling and that subsequent recourse to national support systems
is absent.
Murderball, in depicting borders and bodies, presents very different repre-
sentational surfaces. First, borders are either easily crossed (as the teams travel
to various national locations, or as they swap members or coaches) or are meta-
phorically, temporarily, and melodramatically reconstituted on the court, the
metaphorical battlefield. Second, the desired bodies are not ideal in the sense
that capital generally requires: something novel is clearly happening, because the
rules of quad rugby insist, from the beginning, on a quantifiable level of physical

disability. The film does, nonetheless, represent a striving for a kind of physical
perfection: a physical performance that will result in victory and be rewarded
with a medal. But in this sport (and this filmic document of it), disabled bodies
are desired, for the pleasures of competition and for the privilege of represent-
ing ones nation.
To sort out these disjunctions, we weave our analysis of Murderball with other
fresh and feisty border and disability stories and other fresh and feisty stories of
work. Our chapter was literally composed on either side of the nationally defined
border that is so necessary, fetishized, and transgressed in Murderball. For this
reason, we supplement our arguments about crip nationalism in Murderball with
some personal reflections, which interweave in our chapter with Gramscian pes-
simism. Positioning our reflections has been somewhat difficult: during the com-
position of this article, Nicole was writing geographically from the country on
top; Robert, from the country on the bottom (within the Ptolemy-originated
convention of map orientation). Robert did, however, grow up in Detroit, one
of the few places in which the United States is geographically on top (north) of
Canada. Nicole grew up in Southern Alberta, north of most of the United States,
but for most of the writing of this chapter, she resided just south of Detroit in
Windsor, Ontario. The question of top and bottom becomes ever more com-
plicated as our analysis and reflections develop.
niCole: since canadas on top, i get to go first? but how to begin, when i write
this in the middle of our back- forth discourse, interjecting these musings within
and-
the formalized academic rivalry we jointly compose? ill confess: my dirty secret
is that when-as windsor residents frequently do these days-i travel across the in-
famous ambassador bridge (providing passage to over 10,000 commercial vehicles
every day), i tend to whip out my u.s. passport. im canadian when i return to wind-
sor but u.s.-ian when i enter the north. My passport is just that, legal papers that
allow me to cross borders, to send a courier package from detroit when none of
the courier companies operate in windsor on a saturday, and to vote in both coun-
tries. in canada, i vote whenever an election is called, municipally, provincially,
or nationally, and always towards a labour candidate.7 but in the united states, i
vote only nationally, every four years, always from illinois.8 i usually vote strategi-
cally, rather than loyally, and i vote despite stories that out-of-country ballots are
counted only in the event of a close race (which, at the presidential level, is rarely
the case in illinois). in canada, i usually vote for; in the united states, i often vote
against. and lately, whenever i drive south over the ambassador bridge, i smile

thinking of the canadian border guard unquestioningly believing Michael Moore in
Sicko (2007), when Moore promises that his camera is not rolling, not capturing
the moment of a u.s. citizen crossing the border because of issues of health care.
robert: joseph, my partner for most of the past decade and the center of my
queer family or kinship network for all of it, often gets very, very tired and requires
more sleep than many people (which he sometimes actually gets). although his
neurologist said in one annual checkup that he would be walking more slowly and
with a cane within a year (so far, although he stumbles relatively frequently, he has
not walked with a cane), joseph is, nonetheless, necessarily in motion for many
hours of the day. this is mainly because he is an immigrant from brazil, caught up
in the service economy of washington, d.c., and tied to a catering job that some-
times requires twelve hours of work in a day. as with many from or in the Global
south, josephs work conditions could be labeled super-exploitative. capitalism,
that is, depends upon exploitation of all workers, in the form of extraction of sur-
plus value, but increasingly over the past three decades particular forms of super-
exploitation have been borne by particular kinds of workers from particular kinds
of places. when these workers are represented in cultural criticism on the left
or-in canada, at least, although much more rarely in the united states-in leftist-
liberal journalism, the super-exploited immigrant is poor but robust, subject to
potential injury from work perhaps, but not disabled already. josephs body, like
those of many immigrant workers (or immigrants whose disabilities prevent them
from working), does not conform to this stereotype.
The first thing I learned how to do was jerk off. So says Scott Hogsett, a
player on the U.S. quad rugby team and one of the stars of Murderball. Most
of the players represented in the film conform to the stereotype of young, highly
masculine athletes, and the film does much to depict their self-absorption and
fascination with their Olympic-trained, physically exceptional bodies. Ironically
(since it is so obviously invested in challenging stereotypes), the film revels in
multiple jock stereotypes, celebrating young men who treat their bodies as if
they were machines and who are obsessed with scars and injuries received on the
court. Celeste Langan remarks that to think about mobility disability is to think
about norms of speed and ranges of motion (459). The norms of speed and
strength for these particular players are, like their bodies, exceptional. Dismiss-
ing a comparison between the sport they play and the Special Olympics, Hogsett
announces: Were not going for a hug; were going for a gold medal.

In complicated ways, these athletes desire to play murderous ball and to de-
feat all other teams both mirrors and challenges contemporary notions of dis-
ability and capability, of team sports and nationalism. In discussing representa-
tions of mobility in films such as Speed and The Straight Story, Langan points to
a model of liberal individualism, which, she argues, is grounded in the false
premise of bodily equality as the basis of democratic justice (463). In contrast
to this model, Murderball repeatedly highlights the fact that bodies need not be
evaluated as absolute equals: quad rugby operates through a system of classifica-
tion wherein individual players receive points for their designated functional
level; no team may exceed a total value of more than eight points at a time. But
within the team sport as a whole, the male body paradoxically functions as a
measurable synecdoche for equality that can and must be achieved for the sport
to proceed.
Even more significantly, Murderball both preserves and contradicts the visual
stereotype that male athletes project as physically superior, sexually vigorous,
and conspicuously, adamantly, resolutely heterosexual. We strongly agree with
Cynthia Barouniss argument that the film figures disability as not only reflect-
ing, but also amplifying a deeply constant heterosexual selfhood (57). At the
same time, we are equally interested in the Butlerian (queer) impossibility of
that project and (even more important) in the ways in which the melodramatic
management of the crisis of masculinity that the film stagesa management
that results in the solidification of what Barounis terms the link between [dis-
abled] heteromasculinity and patriotism (60)is absolutely necessary for the
production of the crip nationalism that we are positioning in this chapter as so
useful for the neoliberal state.
Throughout the film, the U.S. players express a desire that their country, in
this sport, be on top. This desire, however, is somewhat queered during the
scene in which the players and some of their girlfriends talk about sex and other
peoples assumptions about their sex lives. The men scorn any opinion that de-
nies their (hetero)sexuality or disavows their bodies abilities to take or give plea-
sure, but this decidedly does not translate into a need to be on top. In the most
provocative exchange, a few of the players are asked by a woman flirting with
them, Does the girl have to be on top? Hogsett responds, without missing a
beat: A lot of girls like to be on top. Theres certainly power and control through
the fetishization of the top position, from both the athletic and nationalistic
perspective, at the same time thatsexuallytheres a necessary (and flirta-
tious and eroticized) flexibility about whos on top.9 We argue that the light,

airy, sexual, and playful sense of whos on top participates in mystifying the
production of crip nationalism and the more insidious neoliberal cultural work
of the film. The stereotypically masculinist athletes performance of the sexual
bottom role, at the same time that they maintain a certain dominance, links a
complicated resistance to, and reaction against, presumed notions of disability
asexuality.10 The need to present a normative (hetero)sexuality trumps the need
to present an idealized masculinity. We may be crips, the athletes brag, but were
normal crips.
Above and beyond (although buried beneath) the more relaxed sexual ban-
ter, nationalism continues to be reinstated, and crip nationalism (also domi-
nant, in ways we will excavate) is generated. This occurs via two melodramatic
stories central to the films project. Coach Joe Soares, an ex-player from the U.S.
Murderball team, becomes coach of Team Canada after his failure to secure a slot
as player for the U.S. Paralympic team in 2004. His sole sporting goal, he admits,
is to defeat his former teammates. Soares, according to current members of the
U.S. Murderball team, has defected to Canada as coach. They rant about him
The only reason Joe went to Canada was to beat the U.S.A.and call him a
Benedict Arnold. They shout at him across a hotel lobby: How does it feel to
betray your country, man? Although professional athletes retire and coach other
teams all the time, each U.S. player insists that Soaress defection was an acute
betrayal, figuratively at the level of national security.
Throughout the film, Soares takes the position of the wrongly jilted beloved.
Though he claims, at one point, that hes living the American Dream, he again
and again rouses his anger and disappointment at being cut from the team, vow-
ing that he will betray his country the way he has decided his team, which he
emotionally conflates with his country, betrayed him. Soares locates his situa-
tion within a melodramatic narrative of disloyalty and deception: he is the unap-
preciated first wife who has been ditched by the team so that they may achieve
their trophy.11 Melodramas present stock charactersjilted beloved, bitter first
wifeon a recognizable stage. As Lisa Duggan has argued, when melodramas
are played out, especially for consumption at the level of the nation, the more
complex and political stories that might be narrated are obscured (Sapphic 20).
Soares eagerly crosses the border to coach the Canadian team, andafter he has
been jiltedproudly wears a maple leaf for most of the rest of the film. His
Canadian team, likewise, easily crosses the border in the other directionas, for
instance, in one scene in which they go to Soaress Florida home for some homo-
social and (Canadian) nationalist bonding after winning the Paralympics prelims

in Vancouver: In a year and a half, Joe says to the team, we have become the
strongest family Ive ever had. . . . I absolutely consider you guys my boys. The
jilted beloved has found new devotion in the other, the foreign, and seductive
lover, the team that formerly occupied the role of rival but now offers a way for
Soares to occupy his own former nation.12 Soares had to leave the U.S. team be-
cause he didnt make the cut, and, in the film, he reinstates his virility by coaching
Canadian athletes with, presumably, team strategies (national secrets) that had
formerly been the property of the team south of the border.
By playing this dangerous sport, pushing and knocking each other over and
crashing and getting back into the game, the U.S. players, back on the court,
demonstrate that they are powerful, athletically endowed, nimble men. They are
young, heterosexual, all-American boys. These boys play hard and tough and
dont understand defeat. The trick to falling, Zupan advises, letting viewers
in on a strategy operative on both sides of the border, is Dont lead with your
head. Lead with your body; lead with that powerful tool you need to rely on in
order to succeed in this game; dont think of yourself as special; think of how
extraordinary you are. Ironically, this court strategy sits alongside what we have
been suggesting about the melodramatic schooling viewers are given: through
Murderballs narrative strategies, audiences are essentially told dont lead with
your head, but with your heart.
The film buttresses the Soares story of cross-border rivalry, betrayal, and
devotion with a second homosocial and homoerotic melodrama aimed at audi-
ences hearts. Zupans best friend Chris Igoe was the driver of the vehicle that
crashed years before the events represented in Murderball; this was the accident
that led to Zupans disability. Both men were drunk, and Igoe was unaware that
Zupan had passed out in the back of the pickup truck he was driving. When the
vehicle crashed, Zupan was thrown from the back into nearby water and dis-
covered only hours later. For years, Igoe could not bear to be in contact with his
friend, much less watch him play on the court. Yet Zupan is shown in the film
desiring, even needing, Igoes gaze and approvalin many ways, more than he
needs those of his girlfriend, who at one point describes herself as having a
quasi-maternal bond with Zupan.13 Zupan far more aggressively elicits the gaze
of his male friend, requiring that Igoe watch his body and approve of his physi-
cally adept movements.
Igoes appearance at the Paralympics functions both as the culmination of this
melodramatic and homoerotic strand in the film and as a redemption narrative:
Zupan has forgiven his friend but still needs for the person who injured him to

see him playing a sport in which he can participate only because he is a para-
plegic. Like Coach Soares, who needs his former teammates to witness his tri-
umph (even as, or especially because, the triumph is over them), Zupan requires
Igoes witness (again, even as, or especially because, the triumph is in some ways
over Igoe himself). It may be true, as Hogsett bragged, that the first thing players
learn after a spinal cord injury is how to jerk off, but of course masturbation is
usually preceded and sustained by erotic fantasies. The film, not surprisingly,
does nothing to link the discussion of masturbation and other sex acts to what is
the strongest erotic fantasy in the film. It is not directly spoken, but the fantasy,
essentially, is If I can only get him to watch me (and, by extension, If I can only
get them to watch us). An explicit acknowledgment of that homoerotic bond
would force audiences to think about how that bond is functioning narratively;
it would, thereby, interrupt the pleasure we are supposed to be experiencing if
we are caught up in the affect of the story. Both Soaress story of betrayal and
Zupan and Igoes redemption tale thus function narratively as ways for audience
members to lead with their hearts.
niCole: when i flash my u.s. passport on the detroit side of the ambassador
bridge, i am, in effect, leading with my head, putting my best face forward and
hiding my secret identity in the glove compartment (for, ironically, since the cana-
dian government now demands that landed immigrants carry various legal docu-
ments when crossing into canada, i cannot return using the u.s. passport, but must
always carry both nationalities with me when i border cross). Murderball fetish-
izes the notion of the canadianu.s. border by pitting ex-team member against
team member, coach against player, brother (melodramatically) against brother. My
ability to display documents of national belonging affords me the privilege of mo-
bility, rendering permeable the border between two nation-states. this contrasts
with the positions of tom kings characters in his short story borders, who lit-
erally live in the in-between of the albertaMontana border. in kings story, the
mother refuses to declare her nationality as either canadian or american, in-
sisting that she is blackfoot. border guards from both countries try to send her
back to where she has come from. but border stations are not located exactly on
the forty-ninth parallel, and each time she turns her car around, she must stop and
answer the same questions at the border of the country she has just left, only
to have to answer the same series of questions and to face again the demand she
choose between two nationalities. kings narrative writes a dimensional border
into the geography, a landscape of in-between. even as the ambassador bridge is

owned, profitably, by Manuel Matty Moroun, it straddles two countries, multiple
historical nation narratives, and innumerable immigrant cultures.
the complexities of national identity are further complicated by disability. when
we discussed this chapter with our disability studies colleague and friend sally
chivers, she responded with this anecdote: im reminded of my former choir mate
and her reasons for staying in canada. she and her husband drove to the u.s. bor-
der on their way to start his career at harvard. the u.s. official looked in the back-
seat and stated, no idiots, mongoloids, or morons allowed. her husband recoiled,
surely you dont mean my daughter? sadly, he did, and chiverss choir friend
and her family stayed in canada.14 despite shildricks pronouncement that it is no
longer possible to distinguish between an originary body and a prosthesis (133),
some physical disabilities and many developmental and cognitive disabilities con-
tinue to be read as alien other by those consigned to the role of upholding some
version of a conformist nation-state.
robert: its not solely the new passport requirements that mark the detroit
windsor border as particularly policed, but also the large arab population in the
metropolitan area that has been heavily surveilled. although i too have crossed
the ambassador bridge (or gone through the tunnel beneath the detroit River)
innumerable times, my own most electrified encounter with the border occurred
elsewhere. near the end of 2005, the year in which Murderball premiered, i was
invited to apply for a disability studies and cultural studies position at the univer-
sity of toronto. having recently received tenure at the George washington univer-
sity, i didnt relish the thought of returning to the status of assistant professor, and
i expected that the position wouldnt offer a comparable salary. but, i thought, it
doesnt hurt to apply.
in March 2006, i was offered the position at a level that surpassed my salary
at the time. i expected joseph to be ambivalent about the possibility of moving; i
assumed perhaps that he was sentimentally (or melodramatically!) tied-as i was,
certainly-to our life in d.c. i discovered, on the contrary, that he was immediately
ready to pack our bags for canada, where his work options would be multiple. in-
deed, in a phone conversation with university of toronto lawyers, i had been told,
Your partner will be issued a work permit at the same time as you. used to re-
ceiving nothing from the state in regard to my sexuality, i asked them if i had to
marry joseph in order for him to receive a work permit. i fully expected marriage
to be a condition-one that would be unwelcome to both of us for many reasons.
no marriage was necessary, and it began to feel as if stepping onto canadian soil

might be that moment in which the whole documentary film of our own lives sud-
denly went technicolo(u)r. with nicole and other canadian colleagues i began the
process of sorting out what life in canada might be like, with special emphasis-of
course-on health care.
there is a clause, however, in canadian immigration policy, suggesting that an
individual might face exclusion, at a later stage, from landed immigrant status
or permanent residency, if that person is considered someone who might make
excess demands on canadian health and social services. the real debates, with
friends and colleagues on both sides of the border, began when i asked the lawyers
about that clause. a day later, i heard back from them. leading with their heads,
they stated: we think it might indeed be possible that your partner will face that
exclusion at some point in the future.
we think, of course, is no guarantee one way or the other, and now, in 2011,
we (all of us) will never know. canadian colleagues and friends produced stories
of others on either side of the divide: i know a heterosexual couple in a similar
situation and it worked out for them, and Yes, weve seen this clause come up be-
fore and its been something of a problem, specifically around hiV, although were
not so sure around Ms. we think it will be okay; we think it might be a problem; we
dont know; were not sure. Minority existence, Phillip brian harper argues in a dif-
ferent context, itself induces such speculative ruminations, because it continually
renders even the most routine instances of social activity and personal interaction
as possible cases of invidious social distinction or discriminatory treatment (108).
in the end, south of the border, joseph and i decided that the question marks were
too many to leave d.c., sell the apartment, give up tenure, and then wait and see.
after canada no longer seemed a viable site for our own emigration, joseph and
i, like so many others, watched as immigration reform continued (and continues)
to stall and fail in the u.s. congress (most spectacularly in the summer preceding
the presidential election year of 2008).
Our personal stories have been about checkpoints, places where one starts or
stops, ormore properlywhere one might desire to start or might be forcibly
stopped or detained. The melodramatic stories of sexuality, masculinity, and dis-
ability identity in Murderball, as well as the construction of Soares as the ideal-
ized crip coach (sometimes ironically, often not) for the nation, we argue, ren-
ders these other stories illegible. The personal stories we tell here are more about
the state than the nation and about the ways that various institutions (including

academic ones) are implicated in the construction of the borders that surround
the state. The ease with which the disability identities and cultures represented
in Murderball both cross borders and hypostasize, on the rugby court, those state
borders as ultimately benign (albeit eroticized) borders between nations, testifies
to the ways in which the construction of (disability) culture can partake of the
barbarism to which Benjamin and Spivak attend. The (crip) nation is founded
on top of these stories that are thereby (because they are on the bottom, buried,
underneath) made invisible.
Some of the final images of the film continue this process of founding the
crip nation on top of other, disappeared stories. One of the concluding sequences
has many of the U.S. quad rugby team players working with Iraq war veterans
at the now-infamous Walter Reed Medical Center (definitely not centre) in
Washington, D.C. They are not there to expose the states failure in providing
adequate care to disabled U.S. veterans at Walter Reed (the toxic, degraded state
of the facility came to public knowledge only after the films release). They are,
instead, bringing the possibility of quad rugby to a group of American heroes.
The scene with Iraq war veterans is interesting not only in terms of the ongoing
construction of a crip nation in Murderball, but also because it is the sole scene
in which the film depicts women who might possibly play quad rugby. Women
potentially trouble the U.S. construction of nation here; although the scene sug-
gests the possibility of incorporation, the discourses of crip nationalism that
have emerged over the course of the film, as we have detailed, are largely mas-
culinist. The notion of the war-injured male soldier, now athlete is underscored
by George W. Bushs rousing endorsement of veterans and quad rugby players
in the closing credits to the film. The metonymic association of the extreme na-
tionalism of the Bush era with the extreme nationalism that each player takes
onto the court is troubling, to say the least. In A Queer Mother for the Nation, a
study of the Nobel laureate Gabriela Mistral, Licia Fiol-Matta argues for under-
standing the flexibility of queerness. Rather than seeing nonnormative sexuality
and gender as somehow essentially transgressive, Fiol-Matta instead considers
how Mistrals spectacular queernessa series of affairs with women, a paradoxi-
cal nonreproductive yet maternal public persona, and a widely disseminated
(through photographs and other images) female masculinitywas deployed not
to challenge, but to abet, state-sanctioned nationalism, racism, and patriarchy
throughout Latin America. We argue here for a similar understanding of the
multifarious ways in which the neoliberal state is beginning to use disability.

By portraying the U.S. teams desire to win the gold medal, depicting their
desire to defeat Joe Soares, and filmically aligning the game itself to a Republi-
can version of loyalty to country, crip nationalism is entirely American, even
as it is essentially offered and exported as a product that any nation might try (or
buy). The U.S.-Canadian rivalry that the film works through presents a version of
nation and nationalism (the other depicted as rival, but also as so similar to the
self that the camera need not distinguish individual others) that displays athletic
and torqued bodies incorporated into nationalized, spectacularized global com-
petitions. Bushs recognition of the quad rugby players conflates young, strong
soldier citizens devotion to their country with team spirit. The final scenes
effectively tie the physical therapy and rehabilitation of returning Iraq war veter-
ans to the extreme sport of quad rugby: it may hurt, but its good for loyal players,
andultimatelygood for the (American) team.
As we have noted, labor relations are not foregrounded in the film. We see
female health care workers (apparently nurses and physical therapists) in re-
habilitation centers located in the United States.15 And we see Soaress young
son, Bobby, engaged in domestic labor in Soaress home: flipping burgers for
the Canadian team, polishing his fathers wall of trophies. Interestingly, Soaress
son (who is not a particularly good worker, in his fathers estimation; he is con-
stantly being scolded by Soares for perceived errors) provides the film with per-
haps the only subtext that even approaches what we argue about the civilization/
barbarism binary in circulation around the film. The subtext still fails, in Spivaks
terms, to get a grip on the disavowal of the economic, but at the very least it
might be read as a moment of rupture that opens a space in which the exclusions
of crip nation might be considered. If the team is engaged in sex that is kinda
queer but ultimately recuperated into a masculinist heterosexual bravado, and
if the two prominent melodramatic narratives are homosocial and homoerotic
but similarly recuperated, Bobby Soaresthe bad worker
anxiety in that he is not clearly on the path whereby traces of queerness
generates would
some
be topped and thereby eliminated by athleticism, heterosexual conquest, and crip
nationalism.
In the middle of the narrative about the quad rugby competition, the film
shows Bobby, holding a kiwi-sized trophy for a recent musical recital, staring at
the rows of statuettes and sports trophies his father has won; Bobby looks de-
feated, simply in not possessing the ultra-athletic, competitive body and spirit
his father so wishes to generate in him. About this pivotal moment, Roger Ebert

says: Then an unexpected development (miraculously caught on camera) causes
Soares to take a deep breath and re-evaluate his life, and his relationship with his
son. Rehabilitation is not limited to the body (par. 10). We assume that the re-
viewer is talking about Bobbys abject reaction to his fathers opulent display of
fame. But Eberts cutesy discourse obscures the insidiousness of the connection it
assumes between physical disability and moral deficiency. His review concludes:
We may not be in chairs and may not be athletes, but we all have disabilities,
sometimes of the spirit (Ebert par. 12).
The films seeming inability to imagine anything but heterosexuality is under-
scored by Joe Soaress counternarrative focus, in which he worries that his sons
lack of physical aptitude (depicted through viola playing) may be indicative of
Bobbys heading down a questionable and, to his father, unfathomable path.
Bobby Soares is arguably proto-queer. Of course, all children are proto-queer,
but boys who arent interested in sports and who play the viola have often been
figures onto whom cultural anxieties about that universal proto-queerness are
projected. Bobbys story is nevertheless melodramatic, and it is thus not unread-
able, even according to the films own logic. Indeed, we would suggest that this
particular queer subplot, given how tightly it is woven into his fathers, and
given how clearly it works in counterposition to the heteronormativity and mas-
culinity of the athletes, provides an autocritique that audiences (and reviewers,
such as Ebert) can easily recognize. Where we read Bobbys story more fully
against the grainand, in the process, turn again toward spectral figures cross-
ing borders completely outside the logic of this border-crossing filmis in our
interpretation of him as one of the few bodies in the film represented as engaged
in compulsory labor.
In the films narrative logic, we suggest that one set of connections, or point
and counterpoint, can be seen, while another clearly cannot: we see how Bobbys
story works against the story of the men at the center of the film, and we thereby
connect plot and subplot. The films logic does not and cannot, for many reasons,
encourage viewers to see Bobby as connected to the female workers in the hos-
pital or rehabilitation center. We simply note here that at the very least his father
degrades his labor in ways that spectrally figure the larger cross-border labor
relations the film ghosts. Bobbys story, read in this way, effectively (and, inter-
estingly, affectively) autocritiques the films disability culturalism; it suggests, in
other words, that the films disability strategies have limits.
A famous photo collage by the late David Wojnarowicz presents viewers with

an all-American boy who looks strikingly like Soaress son, without the glasses.
Surrounding Wojnarowiczs all-American picture are these words, many of
which are very much part of disability history:
One day this kid will get larger. . . . One day this kid will feel something
stir in his heart and throat and mouth. . . . Doctors will pronounce this
kid curable as if his brain were a virus. This kid will lose his constitutional
rights against the governments invasion of his privacy. This kid will be
faced with electro-shock, drugs, and conditioning therapies in laborato-
ries tended by psychologists and research scientists. He will be subject to
loss of home, civil rights, jobs, and all conceivable freedoms. All this will
begin to happen when he discovers his desire to place his naked body on
the naked body of another boy.
The sex discussion the players have in front of the filmmakers, to which we
keep returning, is not simply titillating trash talk, but an engineered critique
(and complaint) of the passive sexual role their visual bodies seemingly supply
for viewers. The players dont simply want the audience to hear that they enjoy
(heterosexual) sex acts with their girlfriends; they speak against the sexually
limited role their bodies play within the confines of patriarchy and nationalized
masculinity. The film and the filmmakers know thisand it is important that
such knowledge be disseminated. Yet a more layered presentation about trans-
national queerness, disability, and labor are what the film, according to its logic,
cant ask, cant tell, cant know.
uS: we thought we might end with some poetic reflections on sitting drinking
(canadian) beer together in nicoles canadian apartment south of detroit, flirting,
bonding, but also reflecting on the dangerous geopolitics that shift culture closer
and closer to barbarism. ironically, however, that river became wider and wider
and neither of us made it to the others location during the writing of this article.
we both still crave that easy crossing as much as we crave sitting around and re-
constructing stories-about the worlds we live in, the ones we observe, and about
the worlds we insistently desire.
noteS
1. Even Bend It Like Beckham, which may be considered a more innovative film
about sports, invites a patriotic reading from its audience, who is expected to root for

Jesminder, a character who has assimilated into UK culture and whose love for football
(soccer) indicates a dedication to what her parents still consider their new country.
2. At least, such is the assumption of most Hollywood movies. Conversely, at actual
sporting events outside the United States, viewers emotions are expected to soar when
their nationality makes (or almost makes) the podium.
3. We adapt the phrase not in spite of but because of from Sally Chiverss recent
work on the Canadian national icon Terry Fox. In speaking of a nine-foot-tall com-
memorative statue for the runner, Chivers writes: This pattern of representation [of
an active athletic young man making great strides in spite of his disability] . . . puts
pressure on disabled people who can rarely convince the normative public that their
achievements might occur because of or even regardless of their disabilities.
4. U.S. publishing conventions compel us to speak of the center of the film here
(and not the centre), although we hope our dialogue throughout pushes these (and
other) conventions.
5. This is certainly not to deny that disability has been useful to earlier forms of
nationalism; veterans with visible disabilities, of course, have long been proudly put
forward as national heroes (even if and as the difficult material circumstances faced by
disabled veterans have often belied the symbolic function they were made to serve).
Just as the homonationalism theorized by Jasbir K. Puar, however, exceptionalizes
the identities of U.S. homosexualities while simultaneously queering others marked
as excessive, perverse, or dangerous (4), the crip nationalism we are analyzing excep-
tionalizes certain (largely U.S.) disability identities and forms of solidarity even as other
embodied experiences are rendered unthinkable.
6. Tellingly, the rivalry between nations in the filmCanada vs. the United
Statesis presented only as a rivalry between the U.S. team and an ex-teammate from
the United States. Not once does the camera focus on Canadian players (in closeup),
and the films narrative strategy does not allow for the personal story of a single Cana-
dian player.
7. In Canada party leaders call federal and provincial elections at Althusserian inter-
vals, thus interpellating Canadian subjects through clerical ideological state appara-
tuses (iSAs).
8. In the United States, presidential elections are set for the first Tuesday of Novem-
ber, every four years. Most statewide elections (governors, senators, and representa-
tives) are also held on the first Tuesday of November, every two, four, or six years.
9. The film has been well touted for its scene where players bluntly discuss sex. When
a twenty-three-year-old straight male writes to the Savage Love columnist Dan Savage
asking for advice on how to indirectly let a woman know he can still perform, Sav-
age quotes in his response The Ultimate Guide to Sex and Disability, advising the writer
to take his date to see Murderball as a way to observe a fairly frank discussion about
sex. There is no advice for pursuing same-sex disabled dates. Yetto keep in purview
the inconsistencies and contradictions that interest usthe film repeatedly projects a

normative heterosexuality that belies the playful slipperiness of Hogsetts words. One
player in fact goes into great detail explaining how he makes use of a towel as a pros-
thetic device to achieve the sexual on top position.
10. Indeed, in what other film would a male athlete gleefully relate the story of
howshortly after his accidentone nurse got so excited I got a woody, she ran out
to get my mom (Hogsett). Barounis reads this scene as in many ways the quintessential
example of how phallic potency is sustained in the film (59). In contrast, we read it
as paradoxically suturing pride and sheepishness (who is on top in this scene seems
particularly and comically fraught) and exemplifying the flexibly queer (in the broad
sense) but nonetheless zealously homophobic new masculinities we are analyzing.
11. In one tragicomedic moment, Soareswhile with his actual wife at their anni-
versary dinnertoasts to Team Canada in response to his wifes romantic toast to
you.
12. The film mirrors Soaress expectation of Canada as enough like the United
States for one to be a surrogate for the other. Soares knows his ex-teammates names
and game strengths, yetagainthe focus on individualized Canadian players is vir-
tually nonexistent, as it is the (easy) figuration of Canada as (kinda) foreign other that
matters in this melodrama.
13. In one talking-head sequence, Zupans girlfriend says that curiosity and the
mothering instinct attracted her to him.
14. Our thanks to Chivers for allowing us to quote from this e-mail of 29 August
2009.
15. These rehab centers, beholden to the insurance industry, are in the United States,
with low-wage workers and chronic understaffing; the film does not depict any Cana-
dian soldiers, in rehab or otherwise, returning from active war duty.

9
abbY l. wilkeRson
normate Sex and itS diSContentS
Like members of the disability rights movement, intersex and transgender activ-
ists have illuminated the hierarchal social construction of personhood and the
significant role of medical pathologization in such categorizing.1 They have also
fiercely resisted medical colonization of individual lives, insisting, as disability
activists have, Nothing about us without us. These movements illustrate both
the profoundly subjugating forces arrayed in the privatization of sex and the
power of resistance through activist articulations of nonnormative sex as a basic
human right.
These concerns are all the more pressing given how globalization has ex-
tended the reach of Western medicine, exporting its troubling regimes of nor-
malization alongside its more benign aspects. Globalization has also opened new
markets for medical tourism; in Thailand, for example, Western tourists enjoy
luxury care, while much of the local population cannot afford what is consid-
ered basic care in the richer nations of the Global North. Disability scholar-
ship and activism is centrally concerned with self-determination for people with
nonnormative bodies. If the greater access to Western medicine (if not an end
to health care disparities) promised by development entails globalizing Western
gender itself, this represents a significant issue for disability activism.
Intersex perspectives have emerged out of struggles with the medicalization
of nonnormative bodies and sexualities, a concern that has been important for
the transgender movement and, in somewhat different ways, for transsexuals as
well. These movements have much to offer disability theorizing of sexual agency,
agency in medical contexts, and agency under oppression. At the same time,
disability theory, particularly through notions of interdependence, can advance
intersex and trans projects of theorizing agency, as well as ongoing work in phi-
losophy and feminist theory on embodied agency.2
But to speak in this wayof these modes of being, thinking, and acting as
distinct and separate from disabilityis already somewhat misleading. Dis-
ability theory and activism deal with embodied variation and vulnerability as
definitive features of human existence, social landscapes shaped by hierarchies
of mental and bodily functioning and morphologies, and landscapes that influ-
ence our experiences in countless ways. Intersexuality, transgender, and trans-
sexuality are clearly part of this purview. As discrete conditions and identities,
and through their larger implications, they affect the lives of disabled people.
Separating disability from these concerns of gender and sex is necessarily arti-
ficial, given how sex, gender, and sexuality interact with ability and disability in
the social constitution of personhood and how gender, ability, and disability are
profoundly interwoven in bodily norms.3 These converging movements raise
politically urgent questions. Creating a shared language to articulate sexuality-
related concerns across diverse social movements and locations is a significant
and pressing rhetorical and political challenge at the heart of all questions of
coalition and community.
In this chapter, I develop a critical concept of normate sex, considering
transgender, transsexualism, and intersexuality as departures from it. If a given
condition can be seen as a departure from normate sex, then the primary target
for intervention should be social norms and practices rather than individuals.
Likewise, a critical notion of sexual interdependence calls for intervention into
social conditions. From this vantage point, intersex and transgender bodies and
lives underscore the importance of nonnormative sexuality as a constitutive fea-
ture of the social category of disability.
Writing about intersex and transgender sexuality through a disability lens
may nonetheless seem a perverse and wayward impulse. Neither transgender,
transsexualism, nor intersexuality can be readily assimilated into conventional
184 Abby L. Wilkerson

notions of disability; they are not motor, sensory, psychiatric, or cognitive im-
pairments; nor are they chronic illnesses. Moreover, given cultural perceptions
of disability as lack, loss, or pathology, many intersex and transgender activists
vehemently refuse any association with it.4
Yet from a radical disability perspective, these concerns are all the more rea-
son to proceed. Disability studies illuminates the normalization of bodies in
ways that extend far beyond what might seem to be unambiguous or obvious
manifestations of disability, and radical disability scholarship and activism, like
the transgender and intersex movements, are based on resistance to normaliza-
tion. This conjunction is a significant opportunity to explore normalization
and resistancein and through sexuality.
Trans and intersex writers and activists have been vocal critics of projects
taking up their work in the service of broader agendas, such as feminist revision-
ings of gender, without attending to these groups human rights, such as legal
recognition of gender identities in the case of transgender and transsexualism
or the harmful medicalization of intersexuals.5 Equally important are the on-
going debates within these communities over such issues as nomenclature, and
whether intersex, transgender, or transsexualism constitute identities at all (as
opposed to states, processes, or some other kind of phenomena). It is precisely
because of this highly contested nature of trans and intersex that they should be
addressed from a disability perspective. They present critical questions for ad-
dressing, on the one hand, the shame and stigma that hamper not only move-
ments but coalitions across movements, and on the other hand, the co-optation
of these terms and movements in the service of other theoretical projects.
As I have argued elsewhere, both oppression and liberation of particular
groups generally involve a significant sexual component (Disability). An inter-
sex, transgender, or disability vantage point is a particularly compelling site from
which to explore: the implications of this claim and the role of conservative
sexual norms in oppression more generally, as well as their frequent justifications
through medical discourse; and eroticization against these norms as a means
of resistance. Perversity, after all, in its deviance and opposition, can be some-
thing to be honored. Its etymology suggests a turning away from that regarded
as right, good, true, for that which is esteemed false (OED). In a Foucauldian
sense, then, the perverse impulse of this project is one of turning away from a
regime of truth in search of another with the potential to release subjugated
knowledges, indicating the profoundly epistemic dimension of erotic dissidence
that these movements exemplify. And more than knowledge, even, is at stake in
Normate Sex and Its Discontents 185

these movements: it is also the social meanings, the new social realities, they cre-
ate and perform, especially through counter-erotics.
normate Sex
As an initial step toward understanding how social group oppression oper-

ates through sexual dynamics, it will be useful to invoke Rosemarie Garland-
Thomsons influential conceptualization of the normate as: the veiled sub-
ject position of cultural self, the figure outlined by the array of deviant others
whose marked borders shore up the normates boundaries. . . . [T]he social figure
through which people can represent themselves as definitive human beings . . .
the constructed identity of those who, by way of the bodily configurations and
cultural capital they assume, can step into a position of authority and wield the
power it grants them (Extraordinary 8). While Garland-Thomsons normate is
indeed definitively able in body and mind, to define the figure entirely in these
terms, she points out, is to miss that the normative body is simultaneously con-
structed through gender, race, and a complex array of other social categories.
Building on these insights, I introduce a concept of normate sex, integrating
insights from sex radicalism, disability studies, and what Judith Butler and others
call the new gender politics of transgender and intersex (Undoing 4). Inter-
sex and transgender medicalization illustrates how normate sex presumes both
the sex/gender binary and conventional heterosexuality. But normate sex has
many more dimensions than this. In a foundational queer theory article, Gayle
Rubin identifies a social hierarchy of sexual value, which establishes what is in-
cluded within the charmed circle of sexuality (13).6 Normate sex shares signifi-
cant commonalities with Rubins Good, Normal, Natural, Blessed Sexuality
namely, Heterosexual, Married, Monogamous, Procreative, Non-commercial,
In pairs, In a relationship, Same generation, In private, No pornography, Bodies
only[, no sex toys], [and] Vanilla (13).
But normate sex is also location specific, occurring particularly in suburban
single-family homes (although Desperate Housewives may have put even this
site into question), not on the street or in public housing projects, not in nursing
homes or hospitals or rehabilitation facilities or airport mens rooms frequented
by Republican senators from Idaho with wide stances. Nor can just anyone
have itcertainly not Hermaphrodites with Attitude, interracial or multiracial
couples, mothers receiving public assistance, adults registered as sex offenders
because as teenagers they had consensual sex with another teenager, men with

breasts, chicks with dicks, anyone who is hiv positive or schizophrenic or uses
a wheelchair, young male immigrants from the Middle East, full-bodied women
naked in hot tubs, or Bob Dole. Given current standards of attractiveness, per-
haps even the young and slender cannot have it if they sport a full complement
of body hair and are not muscular.7
Rather than an exhaustive catalog of the distinct norms that structure nor-
mate sex, this list is more of a snapshot of its recent manifestations, meant to
illustrate the many social categories that constitute it, including race, class, gen-
der, normative genital configuration, age, body size and type, citizenship, and
nationalong with sexual histories and practices, and other circumstances. At
any given time, manifestations can shift in relation to current dynamics, as the
crisis of the moment interacts with the dominant, residual, and emergent cul-
tural forces, to invoke Raymond Williamss categories (Marxism and Litera-
ture 12127). In particular, as cultural and ideological needs shift, this will affect
which already recognized social groups experience oppression, while sometimes
marking out new previously unrecognized groups, exposing them as targets for
oppressive practices.
The norms of normate sex, it must be understood, do not merely draw bound-
aries between appropriate and inappropriate desires, behaviors, identities, and
spaces. They also effect a privatization of sex, regulating nonnormate sex or keep-
ing it taboo and under wraps, through a vast array of state and cultural supports
for normate sex: for example, federal policies such as tax laws and other laws
benefiting married heterosexuals; or Social Security Disability Insurance and
Supplementary Security Income policies that jeopardize income supports for
disabled people who marry; or cultural productions such as films or television
programs promoting normativity as the standard of sexiness, while depicting any
departure from narrowly defined notions of normalcy as sexual tragedy, lack,
loss, or threat. Normate sex continues to be culturally celebrated in its contained
and appropriate channels, while young people with disabilities or the newly dis-
abled asking parents or health professionals for information about sexuality often
encounter a resounding silence or, more likely, harshly negative messages. Such
obstacles are similar to those experienced with other nonnormative sexualities.
The abstinence-only sex education model of George W. Bushs administration
purported to celebrate healthy sexualitymarried, monogamous, normate
and to prevent what we could see as departures from normate sex, such as teen
pregnancy, single parents receiving public assistance, or even sex with condoms.
This ostensible celebration of appropriate sexuality was one more barrier (albeit

the most democratic in its imposition) to information about contraception, safer
sex, and consent issues. The medicalization of nonnormate sex also plays a major
role in its privatization, with patients, isolated from others like them, treated as
individuals with unique pathologies rather than as members of groups who can
provide various forms of support to each other. Such support includes sharing
information that is valuable, not only in making treatment decisions but also in
living with ones condition more generallyor in resisting diagnosis and treat-
ment altogether.8
Even these brief examples of the boundaries surrounding normate sex, the
public supports for it, and the strictures against it clearly indicate both the broad
social consequences of normalizing discourses of sexand equally, I hope, the
desperate need for alliance building. The very ubiquity of nonnormate sex sug-
gested by the range of examples, the myriad ways in which sexual practices can
and do depart from the norm, reveal the allure of transgressiveness, a topic to
which I return near the chapters end. Before doing this, however, I wish to ex-
amine the operations of normate sex more closely. To this end, I now turn to the
examples of intersexuality and of transgender and transsexuality.
make tHe HermaPHrodite fuCkable
Lena Eckert advocates the term intersexualization, rather than intersexuality,

arguing that there would be no such thing as intersexuality were it not for the
process of pathologization that goes hand in hand with the construction of inter-
sexuality. . . . Intersexuality is actually an identity based on the experience of
medical treatment in the West. . . . [And it is a] category which does not have any
specific meaning outside of a specific medical framework (41). This formulation
resonates with disability theory notions of disablement as an active process of
social construction.9
Only a small minority of the various forms of intersexuality requires treat-
ment for noncosmetic reasons, yet the well-documented standard medical re-
sponse has been to intervene on the basis of atypical appearance or physiology.10
Medical interventions into intersex may be in a period of transition. For almost
a decade, some intersexualized people have worked with academics and medical
professionals in the Intersex Consensus Group to advocate substitution of the
umbrella term disorders of sexual development (dSd) in medical contexts. As
a result, the Consensus Statement on Management of Intersex Disorders was
published in Pediatrics in 2006, recommending, among other things, a far more

cautious approach to surgery (Lee et al.). These efforts are possibly beginning
to have an impact on medical practice. However, other intervention-resisting
activists oppose the dSd terminology, some continuing to use the term inter-
sexuality to signify an identity, community, and benign physiological condi-
tion, while others support the term variations in reproductive development
for medical use.11
Intersex activism illustrates both how medical discourse can be inimical to
sexual agency (as well as agency more generally) and how resistance is pos-
sible. Intersex activists have also demonstrated the harms of sexual privatiza-
tion accomplished through medicalization: when a decision is to be made about
whether an infants or young childs genitals should be surgically altered, parents
are usually presented with these questions in a highly privatized context, with-
out input from the intersex community or from anyone else who might challenge
the authority of medical professionals who have a stake in their own expertise.
In addition, parents of intersex children are urged to keep silent about interven-
tions; they are sometimes even advised to move to another town when a childs
gender is reassigned, so that no one will know of any alterations.
In the extensive literature on the harms of intersexualization, survivors of
these genital surgeries tell similar stories of having repeatedly been treated in
childhood as medical spectacles, while being denied access to information about
their own bodies and the nature and consequences of what was being done to
them.12 Thanks to intersex activist efforts, some physicians are beginning to refer
parents to groups that provide nondirective, nonjudgmental counseling and sup-
port. However, there are also now efforts to eradicate intersexuality through hor-
mone treatments and even by offering pregnancy termination to women whose
fetuses are identified as intersex; these practices are similar to, and perhaps co-
extensive with, eugenic practices that disability theory has critiqued. In addition,
until very recently many parents have, on doctors recommendations, accepted
silence about a childs conditions and medical histories as in the childs best
interests. The sexual aspect of the medical scrutiny and resulting interventions
only exacerbates the intense shame resulting from bodily stigma and caregivers
secrecy, leaving young intersexed people with the impression of being the only
one, a freak of nature. This isolation undermines intersex as a conceptually pos-
sible, let alone positive, identityone more privatizing influence of normate sex.
The stigma associated with genitalia of atypical appearance has often meant
that intervention is considered necessary no matter how imperfect the outcome.
Cheryl Chase writes of a woman who, like many intersexuals, lacked sexual sen-

sation as a result of the clitorectomy she had as a child because her clitoris was
considered too large. When this woman sought medical help to restore sensation,
Justin Randolph, a well-known surgeon specializing in clitoroplasty . . . told her
that clitorectomy had been all surgeons had to offer when she was a child (Sur-
gical 150). In other words, her body had required intervention not because of
organic dysfunction, but because of its departure from a morphologic ideal, and
this necessity was perceived as justifying the suffering the procedure had caused
her. Medical discourse constructs much that lies outside its ideal as pathological,
requiring medical correction even when available treatments cannot restore or
create the ideal. In fact, marking might be a more accurate term for what hap-
pens in such interventions, in which surgical scars become stigma, literal marks
conveying a discredited identity, a medical seal of disapproval.
As the previous story suggests, many intersex surgeries are performed osten-
sibly to normalize the genitals visually rather than to correct physiological dys-
function, yet critics have reached a consensus that, as Chase writes, surgery does
not produce normal looking genitals but rather convey[s] the clear message
that abnormal genitals (including surgically reconstructed ones) are unaccept-
able. Surgery inflicts emotional harm by legitimating the idea that the child is not
lovable unless fixed (Surgical 155). Martha Coventry notes, Id be considered
one of the success stories. I still have clitoral sensation, and Im orgasmic. Yet
she goes on to say, its taken me my whole life to come to terms with my body
and not to feel such terrible shame (qtd. in Chase, Surgical 155).
It is difficult to find any reports of intersexuals satisfied with their surgical
outcomes. Pressure to remain closeted in this situation would be strong, yet it is
striking, especially given increasing public attention, that published narratives
of intersexuals consistently convey profound regret for surgical normalization
procedures, especially those performed on patients too young for meaningful
consent. Intersexuality is a powerful example of disruptions to agency in at least
two ways: first, bodies that challenge the standard binary means of assigning sex
are pathologized; second, intersexuals are then subjected to psychologically and
physically damaging treatments. The combined effects are devastating.
Ideals, including medical ones, are nothing if not socially created, and medi-
cine often relies on the quintessential traditional social concept, the heteropatri-
archal sex/gender binary. Medical interventions into intersexuality reflect a ne-
cessity that is most often social in nature, rather than narrowly medical, as one
can see by examining how these interventions function: Surgically altered geni-

talia certify that what could be done to bring a body into conformity with the so-
cial sex/gender binary has been done. Alice Dreger notes that one of the medical
rules of gender assignment is that genetic males must have adequate penises
if they are to be assigned the male gender. . . . If their penises are determined to
be inadequate for successful adjustment as males, they are assigned the female
gender and reconstructed to look female (Ambiguous 28).
It is striking that a penis is thought to require removal and its bearer to re-
quire gender reassignment simply because it is considered a few centimeters too
short, and that hypospadias (in which the urethra is located somewhere other
than the tip of the glans of the penis) is thought always to require repairsin
fact, to require interventions that often cause lasting pain and urinary dysfunc-
tion while failing to eliminate the perceived problem. These examples are based
on an understanding of masculinity that requires an adequate penisnot in
terms of erotic sensation but rather in appearing large enough and in enabling
urination standing up, which at least in the United States is currently considered
necessary for proper male identity development. Thus, the potential to approxi-
mate conventional sex and gender markers is prioritized not only over urinary
function (which in some cases may appear unconventional) but over genital sen-
sation as well, which can be irreparably harmed in the process.
Moreover, various types of intersex surgeries take as their objective the ca-
pacity to perform normal penile-vaginal intercourse. Standard treatment pri-
oritizes this goal, cutting genitalia to shape for conventional intercourse even
at the expense of genital sensation. Kiira Triea, raised as a boy but at fourteen
deemed a defective male (i.e., a female) by John Money of the famed Psycho-
hormonal Research Unit at Johns Hopkins, writes of being given a vaginoplasty
yet being left with no clitoris or erectile tissue: Jones [the surgeon] seems to
have taken care, though, to ensure that I was able to be penetrated, as my vagina
seems to be deep enough to allow for that. Part of my upper left arm was pressed
into genital duty here, which bothered me greatly when I came out of surgery. I
wish Id been consulted or at least informed. Of course, why would I need to be
informed? The objective was to make the hermaphrodite fuckable (143).
This medical emphasis on conventional intercourse exemplifies erotophobia,
which Cindy Patton defines as the terrifying, irrational reaction to the erotic
which makes individuals and society vulnerable to psychological and social con-
trol in cultures where pleasure is strictly categorized and regulated (103). As a
host of feminist analyses have demonstrated, conventional intercourse, with all

its overtones of appropriate gender identities, sexual identities, and the under-
lying biology thought to shape them, is at the center of the charmed circle of the
good, natural, normal, blessed sexuality Rubin describes, leaving other struc-
tures, practices, and identities either deviant or unthinkable (13).
Clearly, then, the medical imperative to make the hermaphrodite fuckable is
based on a conservative heteropatriarchal social imperative, one that is a corner-
stone of normate sex. The disability movement has recognized and contested the
medical and social imperative to bring into conformitythrough correction, re-
habilitation, and even sterilization and other eugenic practicesthose physical
bodies that constitute disruptions to the social body. Yet as intersex medicaliza-
tion indicates, this imperative is inescapably intertwined with that which simul-
taneously regulates and governs sexual identities, practices, and desires, as well
as outward manifestations of gender. Intersexualization illustrates the ways in
which sexual disabilities are constituted in and through social environments.
Yet the social construction of sexuality is surely a more complex phenomenon
than medical discourse suggests, despite the profound influence of the latter. The
historian of science Christina Matta writes that late nineteenth-century intersex
surgeries were based on the idea that an intersex persons anatomy, appearance,
or gonads would always be the same as his or her partners, and therefore that an
intersex persons sexual behavior was inherently homosexualand pathological.
Worse yet, intersex people might have sex both with men and women, sinking to
the depth of sexual depravity. Thus, the goal of surgery at this time was to eradi-
cate sexuality in intersex people altogether, an act of mercy according to one
doctor (qtd. in Herndon). Later in the twentieth century, the rationale for sur-
gery shifted from preventing homosexuality or eradicating sexuality altogether
to the positive demand to approximate normal heterosexual intercourse, as
masculinity increasingly became defined by penis size and heterosexual perfor-
mance.
Medical discourse, although it sometimes actively influences and sometimes
passively reflects social norms, cannot ever entirely speak for society. This is clear,
for example, in Suzanne Kesslers survey of female college students (detailed in
her book Lessons from the Intersexed ), which found that they would be unlikely
to seek surgery for a clitoris perceived as too large (101). And some parents of
intersex children have chosen not to comply with medical advice. Their medical
noncompliance has the effect of resisting Western medicines ongoing efforts to
eradicate intersexuality, through normalizing hormone treatments or through
prenatal detection meant to facilitate pregnancy termination.

wrong bodieS, liminal genderS, and weStern mediCine
Like intersexuality, transgender can be considered a sexual disability in its chal-

lenge to gender norms (which, as we have seen with intersexuality, are not merely
dimorphic but heteronormative), which becomes the basis for pathologization.
However, its relationship to intervention is somewhat different insofar as trans-
sexuals and some transgendered people actively pursue surgical and other inter-
ventions, while intersexuals have expressed a clear consensus in rejecting stan-
dard intersex treatments. A conflict may therefore seem to exist between the
intersex and transgender movements, given that surgical procedures rejected
by intersex activists are the very interventions that many transgendered indi-
viduals pursue and to which the movement seeks greater access. But as Butler
argues, these differences are superficial: Both [movements] challenge the prin-
ciple that a natural dimorphism should be established or maintained at all costs,
both oppose forms of unwanted coercive gender assignment, and both demand
greater claims of autonomy (Undoing 6, 7).
These movements also share a complex relation to the institution of medicine.
Some people who have sought sex reassignment surgery are satisfied with their
care and with the discourse upon which it is based; they find medical notions of
gender congruent with their own experiences of it, despite the grueling nature of
sex reassignment surgery and the entire process that surrounds it. Many trans-
sexual and transgender activists seek improved care, better information, and
enhanced agency in medical interventions, while the transgender movement
as a whole challenges the authority of the medical establishment and the rigid
gender binary enforced through medical criteria, treatments, and procedures.
Transgender activists, like disability activists, see medicine as playing a central
role in blaming and punishing them for social intolerance and discrimination
identifying them as the problem for failing to be normal.13
The female-to-male (FtM) transsexual theorist Jay Prosser frames the medi-
calization of gender transition as an expression of transsexual agency, arguing
that transsexuals have constructed and shaped this medical framework at least
as much as it has shaped their bodies, minds, and identities. Reading narratives
of transsexuals in the United States and Europe, he contends that this active role
becomes evident through the subjective experience of transsexuals. For Prosser,
the language of inhabiting the wrong body . . . simply [reflects] what transsexu-
ality feels like, with body image thus radically split off from the material body
(69). Somatic non-ownership, Prosser argues, is not a metaphor but rather

a literal pretransition bodily experience for transsexuals (73). This is evident,
Prosser claims, in narratives by transsexuals such as Raymond Thompson, who
writes: It felt as if I came into this world with no physical form to protect me. I
was not a solid, tangible being like everyone else seemed to be. I felt vulnerable
and alone (qtd. in Prosser 73). For many transsexuals, sex change surgery is not
only welcome but so deep a necessity as to be fundamental to selfhood.
At the same time, many transgendered people do not want surgical or hor-
monal intervention; either they do not feel the need for congruity between gen-
der expression and somatic form (in some cases because their gender identities
are not based on a unified sense of gender, but rather on a shifting play of mul-
tiple genders), or they experience a congruity inor in spite oftransgressing
conventional gender norms. Others choose some degree of medical intervention
while rejecting the full standard package, such as FtMs who have top surgery
without genital alteration (and sometimes, in order for a surgeon to perform top
surgery, they are forced to pretend they will later pursue the full intervention).
To claims that medical intervention into gender can be an expression of
agency, some critics object that even if transgender demand for medicalization
is not medically created, it is socially imposed, insofar as cultural demands for
conformity to the sex/gender binary produce felt needs for ones body to accord
with ones gender expression as dictated by heteropatriarchal convention. Thus,
desires for sex reassignment surgery would signal a need for social change, rather
than a hormone prescription and a surgical appointment. Can the call to change
punitive social gender norms be compatible with the idea that people who want
medical alterations of their genders should be able to get them?
Many transgender activists call for better access to the medical interventions
that are such deeply felt needs; pathologization should not be the price of this
care. Gender, as one of the most fundamental aspects of identity, should be self-
determined. As it is a quality strongly tied to bodily morphology and socially
necessary for recognition of basic personhood, its self-determination through
medical and other means should be socially supported.
Despite this deeply felt need for medical technologies, however, medical re-
sponses to transgender are by no means immune from criticism; indeed, the
medicalization of transsexualism and transgender can be harmful. The psychi-
atric diagnosis of gender identity disorder (required by physicians in order to
legitimate a request for sex reassignment surgery) has often been applied co-
ercively to children and adolescents, causing lifelong harm. Dylan (formerly
Daphne) Scholinskis The Last Time I Wore a Dress is a particularly compelling

narrative of adolescent institutionalization and the variety of therapeutic regimes
brought to bear on gender expression. Noncoercive applications of the diagno-
sis are also problematic insofar as they define identities and interventions on the
basis of medically predetermined, rather than self-determined, notions of gen-
der and corresponding body morphologies.
In addition, the psychologist Katrina Roen raises concerns of ethnocentrism
implicit in the Western medical discourse of gender transition; these concerns
derive from her interviews with Polynesian gender-liminal people living in New
Zealand.14 Yet in addressing the important issue of cultural imperialism, care
must be taken to avoid positing non-Westerners seeking surgery as merely pas-
sive dupes of the Western system.
One of Roens interviewees, Don, identifies as Samoan and faafafine, a
Samoan term meaning like a woman. Born with genitalia conventionally con-
sidered male, faafafine have an accepted role in Samoan society and, to a lesser
degree, in New Zealand. When Don moved to New Zealand with his family as a
child, his mother warned him, You mustnt walk like that, Don. . . . [T]hey dont
do that in New Zealand (257). Don describes being taught from an early age
that to be faafafine was to be valued and respected: Its like a special woman.
Its a knowledgeable woman but recognized [as] . . . anatomically male (247).
Don states, For me culture is always first and then sexuality . . . Im Samoan
first and foremost and . . . [secondly] Im faafafine (257). In contrast to Dons
foregrounding of culture, which for him is intrinsically linked to his gender iden-
tity and sexuality, Pat, a Maori, identifies as a preoperative FtM. Transitioning be-
cause of his sense that he is in the wrong body, Pat had top surgery. His goal is
to become a heterosexual man. His cultural identity is in many ways secondary,
although at the suggestion of a fellow member of a Maori cultural performance
group, getting Maori tattoos over his chest scars helped him to feel more com-
fortable with his changing body and served as an embodied means of honoring
both his gender and his cultural identities.
Roen contends that because of the increasing influence of the Western medi-
cal discourse of gender, gender-liminal Polynesians may seek sex reassignment
surgery even though they live in a cultural context where their gender liminality
might formerly have been understood in terms of a gender role for which bodily
change was not considered an issue (254). Personal narratives and anthropologi-
cal accounts indicate, for example, that faafafine are accorded a fairly complex
status in Samoan culture.15 They are valued for perceived excellence in various
kinds of work associated with women and are sought after as dramatic and musi-

cal performers, which, with increased tourism, has led to a veritable faafafine in-
dustry for Western consumption. Faafafine, as well as some anthropologists such
as Niko Besnier, interpret these roles as conferring recognized cultural leader-
ship, even as the roles trade in the stock figure of the sexually exotic native. At
the same time, faafafine do not have the social status accorded conventionally
masculine men. They are subject to some gender-based harassment, yet appar-
ently without being considered abnormal or unnatural, as gender nonconform-
ists have often been perceived in the West.
The increasing influence of Western medical discourse culturally and legally
in New Zealand and elsewhere worries Roen. She predicts increasing difficulty
for gender-liminal Polynesians in accessing traditional frameworks of gender
liminality; this difficulty, Roen argues, amounts to a violation of cultural values
and beliefs about the relationship between sexed bodies and lived gender (254).
She calls for theoretical frameworks that would not simply deconstruct the gen-
der binary but creat[e] gendered ways of being that satisfy aspects of both racial
and (trans)gendered politics (255).
Such a goal is vitally important; Roen underscores the dangerous potential of
Western medicine and culture to impose ideals that have sexually disabling con-
sequences for gender-liminal people. It is difficult, however, to rule out the possi-
bility that an FtM such as Pat might have wanted surgery even without the impe-
tus of Western medicine and culture. Any analysis of transgender medicalization
in international contexts should seek not only to eradicate coercion but also to
recognize and foster the potential for agency in cultural exchange. An ahistori-
cal concept of non-Western cultures as having pure and ideally fixed essences
(in this case one of multiple genders) rather than being subject to change and
transformation, enables a critique of one Western idealthe medical gender
binarybut substitutes another in its place: the political notion of the fluidity
and multiplicity of genders. Non-Westerners may develop their own alternatives
to both Western medical and political norms and to their own traditional gender
categories, which may or may not continue to serve them well today.
oPPreSSed grouPS and normate Sex
In her highly influential book Justice and the Politics of Difference, the philoso-
pher Iris Marion Young explicates the term oppression, as it is used by new
social movements in the United States since the 1960s (40). Her positing of the
differential treatment of some groups as a key aspect of injustice offers a valu-

able framework that can be applied to the operations of normate sex. In its
new usage, Young writes, oppression designates the disadvantage and injustice
some people suffer not because a tyrannical power coerces them, but because
of the everyday practices of a well-intentioned liberal society. . . . Oppression in
this sense is structural, rather than the result of a few peoples choices or poli-
cies (41). These must be disadvantages that occur differentially to members of
one social group in comparison with others. Though no tyrant is necessary for
such harms to accrue, for every oppressed group there is a group that is privi-
leged in relation to that group (42). In addition, Young asserts: No single form
of oppression can be assigned causal or moral primacy. . . . [G]roup differences
cut across individual lives in a multiplicity of ways that can entail privilege and
oppression for the same person in different aspects (42)a middle-class, white
gay man, for example, might experience privilege on the basis of race and class,
alongside oppression on the basis of sexual orientation.
Normate sex should be understood as a powerful force contributing to social
group oppression. Major social institutionsthe state, medicine, popular cul-
ture, education, religiondisseminate and enforce its norms. Applying Youngs
framework to the context of normate sex helps to illustrate a significant aspect
of social group oppression, in and through notions of appropriate expressions
of sexuality. Sexual norms capture in a particularly gripping way a vast array of
rules for social relations; that is, rules for relationships and interactions between
and within social groups. Bodies themselves become larger than life in schemas
of normate sex, representing broader states and identities, from communities to
the nation. The terms of this discourse include sexual practices, identities, de-
sires, and spaces, as well as bodily configurations, singly and in combination.
Young draws on traditional Marxist theory, while critiquing and extending it
through the insights of feminism and other recent social movements, in order
to propose specific criteria for determining whether individuals and groups are
oppressed (64). Young argues that the presence of any of these five conditions
is sufficient for calling a group oppressed. But different group oppressions exhibit
different combinations of these forms, as do different individuals in the groups
(64). These five faces of oppressionexploitation, marginalization, powerless-
ness, cultural imperialism, and violencecapture its systemic character and can
be used to facilitate a closer look at how normate sex operates.
Exploitation occurs when the labor and energy expenditure of one group
benefits another, and reproduces a relation of domination between them
(Young 50). The concept of sexual exploitation, the heteropatriarchal sexual use

of women and girls, is one of the founding insights of feminism, one which
women of color famously contested and complicated (Young 5051). We might
also think about exploitation in terms of economies of sexual gratitude, in which
sexual partners of lesser status, or those whose bodies are further from cultural
norms of health, fitness, or attractiveness, are expected or assumed to feel grate-
ful to partners of higher status or to those considered attractive or fit by conven-
tional standards.
Being used in these ways is oppressive, yet not being used is also a problem.
Marginals, writes Young, are people the system of labor cannot or will not
use (53). In the sexual economy, marginals are people the system of normate
sex cannot or will not use. Young sees marginalization as perhaps the most dan-
gerous form of oppression. A whole category of people is expelled from useful
participation in social life and thus potentially subjected to severe material dep-
rivation and even extermination (53). Sexual marginalization occurs when a
groups sexuality is denied, as when disabled people are treated as asexual.16
Youngs specific formulation of power involves authority, participation in
decision making affecting the conditions of ones life, and the opportunity to
develop and exercise skills, which in the world of work is exemplified by the
status of professional work in contrast with nonprofessional labor. Because it
affords ongoing opportunities for self-development, professional work has an
expansive, progressive character, as well as relative autonomy, both of which
contribute to social authority and enhanced sense of self (51). These privileges
extend beyond the workplace to a whole way of life, which Young calls re-
spectability (57). Powerlessness, then, specifically involves a lack of opportunity
to make meaningful decisions over the conditions of ones life and to develop
and exercise skills; it results in a deficit of respect, as when in daily interchange
women and men of color must prove their respectability (58). Sexual powerless-
ness includes, but is not limited to, the lack of access to information needed to
make decisions about sexuality, without which meaningful consent is impossible
and which specific groups may experience differentially.
To experience cultural imperialism, writes Young, means to experience how
the dominant meanings of a society render the particular perspective of ones
own group invisible at the same time as they stereotype ones group and mark it
out as the Other (5859). Cultural imperialism is expressed in the cultural prod-
ucts of those groups who have exclusive or primary access to what Nancy Fraser
. . . calls the means of interpretation and communication in a society (59). Young
notes a paradoxical effect of cultural imperialism, which generates stereotypes

of groups (a nature which is often attached in some way to their bodies, and
which thus cannot easily be denied) while at the same time rendering them in-
visible (59). Young points out that members of oppressed groups experience vio-
lence differentially; that is, they become targets as members of particular groups,
often because they are perceived as presenting a challenge to hegemonic cul-
tural meanings (63).
Together, Youngs five faces help to crystallize a picture of sexually based
harms as a critical aspect of the social oppression of intersexualized and trans-
gendered people and transsexuals. The five faces sometimes overlap with and re-
inforce one another; it is important to note, however, that these forces are never
totalizing.
Exploitation: the exoticizing of intersexualized, transgendered, and trans-
sexual bodies results is tied to objectification by people known contemptuously
in intersex activist circles as wannafucks (Dreger and Herndon 209). In Read-
ing Across the Grain, Eli Clare works through the complexities of sexual ob-
jectification, which exoticizes culture, sexualizes bodies, and distorts real lived
sexuality (Exile 109), hence its opposition by feminists. For disabled people,
however, through its absence, the absence of sexual gaze of any kind directed at
uswanted or unwantedwe lose ourselves as sexual beings (Exile 113).
Marginalization: in heteropatriarchal terms, conventional gender identities,
genital configurations, and underlying physiological structures must map onto
one another conventionally to produce sexual beings. Recall the unattractively
androgynous Saturday Night Live character Pat (played by Julia Sweeney), whose
sex is not known to viewers or, in most sketches, to other characters.
Powerlessness: as the testimonies discussed earlier make clear, powerlessness
is a definitive experience of intersexualization, since intersexuals have often been
denied not simply participation in decisions about gender assignment or sur-
geries and other painful interventions with potentially serious consequences, but
even information about decisions already made long before by parents and medi-
cal professionals. Transsexuals and transgendered people have experienced co-
ercive gender identity disorder diagnoses and psychiatric treatment. And those
seeking surgical and other interventions must operate within the narrow con-
straints of medical protocol, acceding to medical notions of gender and corre-
sponding bodily configurations, which may not accord with their own senses of
their bodies and identities. Powerlessness overlaps with cultural imperialism, as
medical discourse enforces broader heteropatriarchal cultures norms of gender
and sex, rendering those who deviate from them other.

Violence: intersex testimonies powerfully attest to the violence of standard
medical protocols, whatever the intentions of their promoters may have been,
and that are not yet a relic of the past, despite recent shifts to more humane
practices. Consider the practice of vaginal dilation of children, a highly pain-
ful and invasive practice that, outside of a medical context, would be seen as
sexual abuse. For trans people, violence occurs in medical contexts when limited
options result in bodily changes undesired by trans people, who already face a
broader social climate of violence.17
Together, these faces of the sexual aspects of these groups oppression reflect
the systemic character of that oppression. They also indicate the ways in which
being associated with a particular sexual nature (which in some cases involves
a lack of sexuality) can play a significant role in being regarded as lesser than
others. The question that remains is how sexual agency is possible in such con-
texts.
in tHe PleaSure garden: interSex erotiCS
The preceding survey of trans and intersex medicalization illustrates sexuality,

specifically nonnormate sexuality, as a ground of oppression, but it is of course
a site of resistance as well. Many intersexuals, transsexuals, and transgendered
people experience eroticisms in distinct contrast to medicalized notions of sex
a key element of normate sexand the creation of these erotic possibilities con-
stitutes an important form of resistance. The very idea of intersex eroticism can
be vexed, given that activists contend that medicalization has deprived many
intersexed people of these potential pleasures. Some activists who had surgical
interventions as adolescents speak nostalgically of the remembered and longed-
for satisfactions of their unaltered bodies. In the documentary Hermaphrodites
Speak!, Angela Moreno recalls that at age twelve, My clitoris started to grow. . . .
I experienced it as normal. . . . I not only noticed its size growing more promi-
nent but I loved it. I had this wonderful relationship with it. I think that time that
I had, maybe six months before surgery from the time that I had noticed it and
started to love it to the time it was taken from me, was this time in the pleasure
garden before the fall.
For others, intersex eroticism is immediate and ongoing. When Hale Hawl-
becker was born, doctors told his parents that because of his small penis surgery
must be performed and he must be raised as a girl. His parents refused. Now,
writes Hawlbecker, [my penis] brings me and my partner a great deal of plea-

sure. It grows erect, it penetrates her vagina, it ejaculates. I dont know what else
I need it to do. I am just so lucky that I was able to keep it (112). Because tests
indicated that he was genetically male, his parents saw no need for interven-
tion; a genetic essentialism thus undercut the prevailing surgical essentialism,
to the ultimate benefit of Hawlbecker (and his partner) (111). Even though the
sexual practices that Hawlbecker describes do not overtly vary from conven-
tional heteronormativity, his affirmation of his own sexuality despite the size of
his penis clearly indicates a resistant pleasure in refusing pathologization.
An intersexual named Kim writes of penetrating her lover with her own cli-
toris, a pleasure she acknowledges is possible to her only because her body has
not been surgically altered, as many other intersexuals have been. She says, I
like the fact that we are each individuals, which necessitates a wide variety of
body shapes, sizes, and colors. I certainly dont feel the medical establishment
has the right to determine which of our bodies are socially acceptable (100).
Though sex-positive visions of intersex eroticism post-surgery remain ex-
tremely limited, the existing literature nonetheless indicates much about how
sexual agency and pleasure can be fostered. In Sharon Prevess life history inter-
views with thirty-seven North Americans whose bodies have been character-
ized by others as intersexed (5), breaking free from shame and inhibitions was
often associated with learning about and acknowledging ones intersexuality
(136), whether one had experienced surgical alteration or not. Prevess partici-
pant Claire (survivor of a clitorectomy at age six) reports that after struggling
to accep[t] her intersexuality as an adult, I came to really love my sexual self.
The way I felt, and the way I smelled, and the way I responded, and the way I
tasted. I came to love my body that way without any judgment about how it
looked in a societal way or how it performed or what it could and couldnt do
(qtd. in Preves 136). Sherri, who had had an orchiectomy as an infant, valued
her support groups help negotiating sexuality in the context of a short vagina:
Im probably the only person in the world who, moments after [sex], would be
on the phone with about thirty different women talking about it, from all over
the world (qtd. in Preves 130).
Several interrelated factors emerge from the literature as crucial for foster-
ing sexual agency: support for positive identities (which may or may not involve
embracing the term intersex);18 coming to terms with ones body; access to
information about sexual communication and practices, delivered supportively,
by others in the same boat; strategies for communicating and negotiating with
actual or potential sexual partners; openness to a range of sexual practices; and

expectations that partners also could be open. Intersexuals public reflections on
sexuality encompass a range of pleasures and identities, rather than evaluating
the eroticism of bodily configurations and practices on the basis of their prox-
imity to a predetermined norm. Moreover, when activists publicly claim this
nonnormative eroticism, the movement challenges the medical privatization of
intersex sexualities and intersex identity itself.
botH fleSH and dream: tranS erotiCS
The transgender movement presents a similar challenge. Contributors to

GenderQueer: Voices From Beyond the Sexual Binary exemplify a transgendered
erotics that locates pleasure in departing from gender norms. For some, this is
based on a singular trajectory away from anatomical sex. High femme Sonya
Bolus writes to her transitioning FtM lover, I notice that much of my desire is
linked to the disparity between your gender expression and your body. When you
bind your breasts, pack a dick, when you wear a suit and tie, T-shirt and boxers,
when you shift before my eyes from woman into man, I am aroused, excited be-
yond belief (117). Bolus locates pleasure not just in her partners masculinity but
in its marked contradictions, its mutability.
Other GenderQueer contributors, however, eroticize their own or their part-
ners gender multiplicity itself. Femme Joan Nestle says to her woman poppa, I
do long to suck you, to take your courage into my mouth, both cunt, your flesh,
and cock, your dream, deep into my mouth, and I do (177). As a young dyke
without a name yet (223), Toni Amato overhears strangers at a restroom asking
about her, Do you think its a boy or a girl? (224). She takes on this indetermi-
nacy and claims it erotically: Its a girl, Mrs. Robinson, a girl . . . full of awe and
wonder and amazement and desire thicker than the air. . . . Or it could be a boy,
if thats what you want . . . a 17-year-old boy, at the mercy of hormones, full of
romance and quivering lust, full of flowers and chocolates and bad poetry for the
giving. Its a girl. Or a boy, if you want it. However you want it (224).
Peggy Munson and her lover try out names for the lovers former cock:
girlcock, galleros, or cockfighter, Jackie O (14445). Munson writes, Some-
times I make her quiet, real quiet, just ozone and anticipation and wanting. I like
it when shes my tornado girl like that, deep in the profound vortex of her own
formative cunt (145). At other times, though, Sex with her can . . . be a peleas
de gallos, a cockfight, pure raging animal testosterone from either one of us. . . .
She confuses everything I am, shakes the change out of my pockets and makes

me want to barter with foreign currency (145). For these writers, it is the in-
determinacy, the shifting range of masculinities and femininities, that provides
the erotic charge.
Amato writes of her lovers response to her own claimed identity, rather than
to her anatomy: She doesnt know, my lover, what she has saved me from by her
seeing and wanting what isnt there, not really, except for sometimes, when its
really, really there (225). Gender is relational here, in the sense of being made
intelligible through the erotic responses of lovers to one another. Intelligibility
also emerges through public recognition. Dawn Dougherty says that her lover
is routinely mistaken for a man; these mistakes, she knows, endanger both of
them, given the constant potential for violence against gender nonconformists
(222). Nonetheless, says Dougherty, I love to be out with her. She makes me
visible in my own community, and it thrills me. When I walk down the street
with my lover, I am guilty by association. She makes our presence known with
her swagger and muscles (222).
ConCluSion: a Call for Sexual- Cal interdePendenCe

Politi
In mainstream discourse, the term sex signifies magnetism, an inherently ir-
resistible natural force that pulls bodies together the way gravity pulls us toward
the ground. Paradoxically, however, particular cultural associations of sex with
a given social group often serve as a wedge, separating that group from others,
as we all vie for the title of most worthy and respectable. Such competition un-
failingly undermines solidarity; it also keeps people silent when faced with other
groups struggles related to sexual agency. It is extremely difficult to create coali-
tions around these issues of sexual oppression. Oppressed people usually have
been handed more than enough shame and disgrace already to feel prepared to
take on someone elses scandalous sexual predicament. Yet without facing these
mainstream discourses of shaming head on, we are at an impasse when it comes
to resisting the power of normate sex. Moreover, as we have seen, when we take
these histories into international contexts, it is difficult not to posit our own cul-
turally specific narrativeswhether radical, neoliberal, or conservativeas the
yardstick of others progress or well-being, and doing so can undermine the very
agency we presumably seek to foster.
The medical and social erotophobia manifested in the medicalization of inter-
sexuality clearly demonstrates the centrality of sex, gender, and sexuality con-
cerns to the disability movement, and thus its stake in challenging not only com-

pulsory able-bodiedness but also compulsory heterosexuality and the sex/gender
binary that supports them both. Disability studies has illuminated the impor-
tance of interdependence, both as a description of situated human life and as a
social value to be promoted. If we are serious about valuing interdependence, I
believe that we must push the meaning of this term further than we have thus far;
in recognizing the inextricability of intersex, transgender, and disabled peoples
oppression, we must also envision a sexual-political interdependence: a politics,
that is, that emphasizes our interdependence as allies and that values the poten-
tial of the sexual to enable this interdependence to flourish.
The genesis of the intersex movement illustrates the promises of sexual-
political interdependence. Many intersex people who also identify as queer de-
scribe a need to also come out as intersexual. Chase writes: The word her-
maphrodite was horribly wounding; it drove me to the brink of suicide. I
thought back to my earlier process of coming out as lesbian. The way out of this
pain was to reclaim the stigmatized label, to manufacture a positive acceptance
of it. This second coming out was far more painful and difficult (Affronting
206). In her earlier coming out, Chase recalls, her search for signs of lesbian exis-
tence paid off, and she was able to find and participate in lesbian community.
However, Chase writes: No such help was available to reclaim my intersexuality.
The only images I found were absolutely pathologized case histories in medical
texts and journals, close-ups of genitals being poked, prodded, measured, sliced,
and sutured, full body shots with the eyes blacked outsignaling the object of
a gaze meant to travel only in one direction, in ways that are all too familiar in
disability contexts (206).
Though it is nowcontroversiallydefunct, Chase founded the Intersex So-
ciety of North America (iSnA).19 She drew on her experience of lesbian commu-
nity as a model for the kind of activism that eventually opened a space for public
conversations on intersexuality, eroticizing practices, desires, and identities that
had been stigmatized, thus deepening a sense of solidarity, which in turn enabled
political organizing and resistance. Alliances between intersex and queer com-
munities might be said to restore the magnetism attributed to sex in dominant
cultural discourses and to apply this magnetism to a perverse end. Rather than
drawing together two normatively beautiful, heterosexual, nondisabled, white,
middle-class bodies to perform a specific set of predictable acts that qualify as
sex, the sexual magnetism that enables and arises from coalition building shat-
ters the presumed supremacy of normate sex. It brings, for example, the thrill of

sexual pleasure to the guilt by association in which Dougherty revels when she
walks down the street with her lover (222).
And coalitions are often key conditions for political change. The queer history
of iSnA played a central role in bringing reform to intersex medicalization, how-
ever tentative and fledgling that reform may be. The collective action of groups
like Hermaphrodites with Attitude led to modes of organizing with allies in aca-
demic and medical circles, who together are beginning to reach the medical
profession. Chases work indicates that queer and intersexual movements may
be distinct but are not separate, while Naomi Finkelstein and Clare indicate the
same for the transgender and disability movements. None of this is to deny the
difficulties of coalition building. But disability studies and activism have dem-
onstrated the folly of relying on atomistic visions of self-determination, which
are based on autonomy at the expense of interconnection. Perhaps it is time to
succumb to the perverse pleasures and challenges of sexual interdependence.
noteS
I am indebted to Robert McRuer and Anna Mollow for providing invaluable responses
to earlier drafts of this paper, as did two anonymous reviewers for Duke University
Press. My writing companions Robin Meader, Pam Presser, Rachel Reidner, and Karen
Sosnoski responded in extremely useful ways at various stages in this project. My part-
ner Pat McGann and dear friends Lisa Heldke and Peg OConnor provided ongoing
discussions of issues related to the paper. Audience comments at the Radical Philoso-
phy Association, Feminism(s) and Rhetoric(s), Society for Disability Studies, and the
George Washington University Department of English benefited me as well.
1. Transgender typically refers to living or identifying outside of conventional
gender norms, with or without medical treatment. Intersexuality refers to an assort-
ment of conditions resulting in genitalia of atypical appearance or structure, in ways
that tend to confound standard binary means of assigning sex to bodies.
2. See, for example, Weiss, Body Images and Refiguring; and Campbell, Meynell, and
Sherwin.
3. For examples of disability studies ongoing work on gender and sexuality, see
Clare, Exile; Finkelstein; Garland-Thomson, Extraordinary and Integrating; Hall;
McRuer and Wilkerson; and Smith and Hutchison.
4. For a discussion of these issues in relation to intersex activism, see Colligan.
5. See, for example, Koyama and Weasel.
6. While Rubins notion of sexual hierarchy is valuable for the reasons I suggest, it
is at the same time problematic insofar as she posits sexual hierarchy as operating apart

from other social hierarchies, a critique I develop in Disability, Sex Radicalism, and
Agency.
7. On Hermaphrodites with Attitudes, see Chase, Hermaphrodites; on men with
breasts, see Wilchins 31. In Terrorist Assemblages, Jasbir K. Puar considers the ways in
which the sexuality and embodiment of Middle Eastern men is discursively produced
as perverse and excessive. In the feature film About Schmidt, a naked character played
by Kathy Bates invites Schmidt, played by Jack Nicholson, into a hot tub with her; the
scene spawned jokes by critics and viewers alike, jokes that seemed premised on the
offensive assumption that a fat woman could not be sexually attractive or inviting. The
former Kansas senator and Republican presidential candidate Bob Doles turn as a
Viagra representative was likewise the subject of jokes for months after the commer-
cial featuring him appeared; the jokes reflected widespread discomfort with sexuality
among old people. The producer and screenwriter James Schamus made clear some of
the compulsions facing the young and slender in our current moment when, reflect-
ing on the making of Taking Woodstock, he told reporters at the Cannes Film Festival
in 2009: The biggest challenge was to get extras who were skinny but who were not
working out all the time. And who still had pubic hair (Hornaday).
8. For more of my own work considering these issues, see Diagnosis: Difference and
Refusing Diagnosis.
9. See, for example, Oliver.
10. In Ambiguous Sexor Ambivalent Medicine? Alice Domurat Dreger pro-
vides an overview of the forms intersexuality takes. See Chase, Affronting and Her-
maphrodites, and Dreger, Intersex for intersexual medical narratives as well as activist
responses and ethical and political analyses of intersex medicalization.
11. For a useful account of these debates, see R. Davidson; Feder; Dreger and Hern-
don; and Holmes, Critical Intersex. On one side of this debate are Intersex Society of
North American (iSnA), renamed as the Accord Alliance; on another are Organisation
Intersex International (oii) and the Androgen Insensitivity Syndrome Support Group
UK (AiSSG). See Intersex Society of North America (iSnA), Whats the History?
12. Many of these stories are recounted in Dregers Intersex in the Age of Ethics. On
these harms and others recounted in this paragraph, see as well iSnAs Whats the His-
tory behind the Intersex Rights Movement?
13. A female-to-male (FtM) transman in the documentary Southern Comfort lifts
his shirt, revealing scars from his chest surgery so prominent as to suggest that the
surgeon, known among breast cancer patients for excellent mastectomy techniques,
deliberately induced the scars out of an antipathy toward this patient or transgendered
patients in general.
14. Roen also identifies ethnocentrism in the Western transgender movement itself,
suggesting that transgender as an identity category uninflected by race and culture is
alienating and inaccurate for many people of color.
15. See, for example, Besnier; Worth.

16. See my Disability, Sex Radicalism, and Agency for further development of this
and other examples of sexual harms differentially imposed on particular groups.
17. For an important consideration of these issues, see Wyss.
18. See Holmes, Intersex 109.
19. Chase was instrumental both in creating a queer and intersex alliance through
founding iSnA, and later in iSnAs dissolution and reconstitution as the Accord Alli-
ance, which advocates for the concept of disorders of sexual development rather than
that of intersexuality. See note 11 above on debates regarding these competing frame-
works.

10
chRis bell
im not tHe man i uSed to be

sex, hiV, and cultural Responsibility
The cost of safety is to deny bodily pleasure.

Patricia Hill Collins, Black Sexual Politics
Eros is a force that culture has always tried to control. For the idea of social order
itself to exist, desire must be controlled. Urvashi Vaid, Virtual Equality
In September 2003 an arrest warrant was issued for Gary Cox, deputy chief oper-
ating officer for the City of Atlanta. He was charged with, and subsequently in-
dicted for, pandering, soliciting of sodomy, and sexual battery. The latter charge
was a misdemeanor; however, the initial two were felony charges because Coxs
accuser was a minor. This individual, sixteen-year-old Greg Martin, claimed that
in August of that year he had arrived at the Greyhound bus station in Atlanta. His
connecting bus to Michigan had been delayed, forcing him to remain at the sta-
tion for several hours. Having no money for food, Martin approached Cox, who
was awaiting the arrival of his nephew. Cox said that he had no money on his per-
son but offered to take Martin to his home to acquire some. Testifying during the
trial, Martin stated that while he was at Coxs home, Cox offered him $100 if Cox
could perform oral sex on him. Martin rejected the offer. Cox made a counter-
offer of $50 for Martin to disrobe. Martin refused and demanded that Cox return
him to the Greyhound station. Having arrived back at the station, Cox touched
Martins genital area and instructed him not to tell anyone. He gave Martin $25.
The jury deliberated for one hour prior to finding Cox guilty of all charges.
The judge sentenced him to seven years in prison, stipulating that he serve two
years in house and be placed on probation for the remaining five. On the day the
verdict was read, Mayor Shirley Franklin fired Cox, who had been on unpaid
leave since his arrest.
The action was entirely unplanned.

I was in Cancun attending a conference. I had had way too much to drink at the
conferences opening reception and was now stumbling back to my hotel. The walk
was not too daunting; all I had to do was follow one appreciably well-lit boulevard
while trying not to let the signs warning of possible alligators register too much in
my consciousness.
Midway through the trek, I noticed a slightly concealed path leading from the
main road to a pier overlooking the lagoon. Never one to pass up a sightseeing
opportunity, I left the road and walked down the dirt path to the pier, carefully
brushing aside the tree branches obscuring the trail. When I made it to the pier, I
realized I was not alone. A figure had cast a line off the pier and was awaiting a
bite. He turned in my direction, frowned at the intrusion, and turned away. I posi-
tioned myself away from him on the other side of the pier and gazed at downtown
Cancun off in the distance. I did not think about the contrast between the relatively
squat buildings in front of me and the sleek high-rise resorts behind me. I did not
think about the paper I was presenting the next morning. Instead, I thought about
how much scotch, gin, and tequila I had imbibed in a very short period of time and
how good it felt to be alive. I could be, do, and have anything I wanted, and in that
moment, I wanted him.
I abruptly turned away from the lights of downtown Cancun and approached
him.
Perdneme; habla ingls? I inquired, as if I would know what to say next if
he replied in the affirmative.
No, came the response with nary a glance in my direction.
I saw my right hand stealthily reach for this individuals package. Lucidity inter-
vened as I forced myself to realize that my hand was not acting on its own; I was
causing this to happen. I made contact.
Im Not the Man I Used to Be 209

No. He pushed my hand away.
I sighed in frustration at this obstruction and, as if schooled in the act, reached
into my pocket to extract a bill. I held it so that he could see the denomination and
pushed it into the hand not holding the fishing rod. I made contact. Two hundred
pesos, or twenty U.S. dollars, allowed me to. Shortly thereafter, I dropped to my
knees. The money continued working in my favor for one, two, however many min-
utes, until he stiffened and pushed me away. I looked upthis was the first time I
saw his faceand saw him gazing anxiously toward the main road. A man and a
woman were staring at us through the branches. Neither my friend nor I moved.
Eventually, the man said something to the woman that made her laugh. I watched
them briefly as they turned away and traveled in the direction of, I can only hope,
the alligators.
Having assessed the situation, he moved to the other side of the pier which was
not visible from the road. He lowered his shorts past his knees and stood with his
back to the lagoon, facing the Hotel Zone. He still held the fishing rod in one hand.
He beckoned me over.
It did not take long to finish. His demeanor did not change even when he came.
For the second time, I looked up into his face as I swallowed. I saw neither content-
ment, nor surprise, nor satisfaction. I discerned tolerance. That is all.
Afterward, I felt awkward, not knowing what to do or how to act. Recalling
my mothers insistence on always extending common courtesy, I uttered Muchas
gracias as I careened back toward the main road. Upon my arrival at my hotel, the
bellhop smiled and touched his hat.
I hope you had a nice evening, Seor.
I managed a weak smile as I walked past, trying to figure out how he could so
cavalierly ignore the scarlet letter P emblazoned on my shirt.
I had barely made it to the elevator when what I had done dawned on me. As I
was whisked to my floor, I replayed the events in my head. When the doors opened,
I walked to my room with them still on my mind. I spent the next hour focusing
on my fifteen-minute escapade: I wondered why I had allowed it to happen. I won-
dered about the two witnesses. I worried about Mexican penal law. Sitting alone
in a hotel room in Cancun that I could barely afford, I realized I had done some-
thing that had brought me pleasure despite its illegality. It made me feel good, and
it brought harm to no one, I thought. So why should it not happen again? And why
could I not orchestrate events so that it would happen again?
Sleep came easily.
210 Chris Bell

In November 2004 Gary Wayne Carriker was charged in Fayette County,
Georgia, thirty miles south of the city of Atlanta, with having consensual sex
with an individual between December 2003 and May 2004 while not telling this
individual of his hiv-positive status. After posting bond, Carriker returned to
his studies at Emory Medical School, where he was a fourth-year student. A
few months later, in April 2005, Carriker was arrested in Fulton County, where
Atlanta is located, and charged with two felony counts of reckless conduct. Two
men asserted that Carriker had had sex with them while not apprising them of
his hiv-positive status. One of the men claimed that Carriker had participated in
consensual oral sex with him throughout the month of January 2005; the other
indicated that Carriker had engaged in consensual oral and anal sex with him
between June and September 2004.
In November 2005 Carriker entered a guilty plea to correspond with the first
charge of felony reckless conduct in Fayette County. The judge sentenced him
to ten years in prison, with the stipulation that he serve two. The balance of the
sentence would be served on probation, and he was also mandated to undergo
counseling. During the initial two years of his probationary period, Carriker was
required to honor a 10 p.m. curfew as well as fulfill five hundred hours of com-
munity service with an AidS service organization. He was expelled from Emory
Medical School and ordered to reimburse scholarship funds to that school as well
as to his undergraduate institution, the United States Air Force Academy. He vol-
untary relinquished his commission as an Air Force Officer. Later that month,
Carriker entered a guilty plea in Fulton County for the two indictments for reck-
less conduct there. His accusers testified that they did not think Carriker should
receive additional prison time, especially since he informed them of his hiv-
positive status, albeit after the acts. The judge agreed, sentencing him, despite the
prosecutors insistence on a harsher penalty, to ten yearstwo in prison, eight
on probationjust as the judge in Fayette County had, with the sentences to run
concurrently. None of the individuals contracted hiv from Carriker.
It happened seamlessly, almost as if it were meant to be.

Summer was waning, although you would never know it this particular night in
Chicago, where the temps were in the 70s even at 4 a.m.
I was returning home from a party at a friends house where I had had quite
a bit to drink. Since it was such a nice night, I opted to take a quick stroll up Mil-
waukee Avenue. This meant that after disembarking from the train, I did not exit

at the turnstile adjacent to my apartment; rather, I walked to the other end of the
platform and exited from there.
There were few pedestrians out at that time of morning, although the occasional
taxi meandered by. I reveled in the silence of this block that in the daytime was
abuzz with energy. As soon as I saw him standing under the awning of the Wash-
ington Mutual at the end of the block, I knew what was about to happen. I walked
past him and heard him call after me Cerveza? I crossed the street and turned
in his direction when I had reached the other side. One glance was all it took. He
followed me across Milwaukee and accepted the twenty dollar bill I offered him.
For a split second I contemplated the observational reach of the cameras outside
of Washington Mutual, my bank, but then I cast those thoughts aside. As I walked
toward my building, he wordlessly fell into step behind me.
I entered the courtyard of my apartment building, and he followed suit. I keyed
into the building and held the door for him. We walked up the three flights of
stairs to my apartment. As soon as we entered, I led the way to the kitchen, where
I frowned and said Cerveza? No ms. (I felt a pang of regret in that I did not
know how to say I dont have any in Spanish. I dont drink beer; thus, stating that
there was no more, when there had never been any in my apartment, felt morally
wrong.) I reached into the cupboard and extracted two glasses and a bottle of rum
Id picked up in Puerto Rico not long before. This satisfied both of us.
And then it happened. The TV cast its glow on us as we maneuvered on the
couch. I marveled at the swiftness with which he put the condom on much more so
than the fact that he put it on. And then it was over.
I closed the door behind him, presuming he would know how to find his way
back to the courtyard, then the street, then the bank, and then wherever. I made
my way back to the couch. As the sun came up, I closed my eyes and slept.
It was entirely uncomplicated.
Both the Cox and Carriker cases are fitting points of departure for an ex-
amination of not only the politics of hiv disclosure but the contexts (or so-
cial spaces) in which that disclosure does or does not occur. Although Cox was
hiv positive, this fact was barely reported in the media and was not focused
on during the trial proceedings. The central issue was his propositioning of a
minor individual. The charges against Carriker, in contrast, pertained wholly to
the nondisclosure of his seropositive status. In his analysis of the Carriker case,
Policing Positives, the journalist Kai Wright traces the history of partner noti-
fication laws in the United States:
212 Chris Bell

Western efforts at disease control have been firmly rooted in paternalism
and policing from their inception. The German doctor Johann Peter Frank
first spelled out the states responsibilityand authorityfor maintaining
a healthy citizenry in a series of groundbreaking, turn-of-the-19th century
volumes, aptly titled A System of Complete Medical Police. It was a soup-to-
nuts guide on what people needed to do to stay healthy, and how the state
should encourage that behavior. Predictably, moralism was a recurring
themeone infamous section urged local officials to place time limits on
dances that seemed too erotic, like the waltz.
That top-down perspective on prevention has persisted, and it in-
formed governments initial response to hiv. . . . [W]hen, in 1990, Con-
gress passed the Ryan White cARe Act, which is now the federal govern-
ments primary vehicle for funding AidS services[, lawmakers] included a
provision demanding that every state have a criminal code that allows it to
prosecute a persons failure to disclose an hiv diagnosis to someone who
may be put at risk by it.
Ultimately, for all the talk about sending messages to people who are
positive, the real message of criminalization laws may be to everyone else:
this troubling and complicated epidemic isnt your problem, its that of
monstrous outsiders who we can simply wall off from regular folks lives.
The history of AidS criminalization laws in the United States is the history of
marginalization, demonization, and scapegoating. It is also a history that has
precedent in other countries.1 In essence, the history of AidS criminalization
laws is an instructive one based on the rigorous disciplining and punishment of
ostensibly deviant bodies.
On an April evening following the uncomplicated September night, I found myself

walking down Listopada Street in Bielsko-Biala, a city in southwestern Poland. I
had moved to Bielsko that January to teach cultural studies classes at the university
and to undertake disability-related research at Auschwitz and Birkenau.
I had been drinking this evening at my favorite restaurant, Mimoza. Having
polished off a trout, a side of leafy-green szpinak, and the better part of a bottle of
red wine, I knew what I needed.
As I walked down Listopada, my thoughts turned to a conversation I had had
in Warsaw with a friend a few weeks prior:
Ive taken to prowling the streets looking for men to pay to have sex with me.

You what?!
You heard me.
But why?
Why not?
Because its prostitution, and you can go to jail for it.
Actually, I think the legal term is pandering. But in any event, you dont have
to be so negative.
Christopher! How often do you do this?
Oh, every once in awhile. The first time was in Mexico, and it happened again
when I was living in Chicago, and I tried to make it happen last night here in War-
saw over by the train station but the guy freaked out and ran away. It was really
dramatic, too. I mean, he was the one who came up and asked me for money. But
then he got all weird when I told him Id give him some if he let me suck him off. I
dont understand some people.
This happened last night?! Here? I left you at a bar. Why couldnt you just pick
someone up there? Or go to the sex club? You certainly know where it is.
True. But its not the same. And dont get me wrong; I still have standards. Like
last night while walking through the train station, a guy approached me and asked
for money. I could have taken him back with me to the hotel, but he looked drugged
out. So I declined. Surely there must be something said for that.
Yeah, but I dont know what. In any event, I think you should stop it. What
happens if you get beaten up?
But I havent.
But you could.
But I havent.
You should stop.
I know I should stop. But I cant. It feels nice to be in control.
That night on Listopada, I went home alone.
The next afternoon, I was walking down the same street, having spent the better
part of the morning sipping tea and reading Trollope, when I felt a tug on my arm.
I glanced over to see a dark-skinned individual looking at me inquisitively. All
around us, the locals tried to disguise their amazement at the sight of two nonwhite
people on a street in southwestern Poland. Whats going on in our world? they
most likely thought to themselves. Im going to have him, I vowed to myself.
We walked back to my flat near the City Hall. As we entered the foyer, the land-
lords son did a double take. I greeted him more cheerfully than usual and entered
my flat uninhibitedly.
214 Chris Bell

We shared a bottle of Zubrowka vodka and, despite the presence of three chairs,
sat on my bed, talking for some time. He spoke no English but I knew enough Polish
to grasp most of what he said. He was a security guard at a bank in a small town
outside of Bielsko and also a bouncer in a club in that same town. Although he was
shorter than me, he was heavily built and carried himself with evident ease.
What happens if you get beaten up?
But I havent.
But you could.
He told me he was from Romania. It seemed more of a confession than an addi-
tion to the conversation. Then he explained that he was a Roma gypsy and that
Polish people tend to look down on these individuals. Not me, I said. Not me.
I noticed that he drank faster than I did (which rarely happens), so I was quick
on the refills. Our conversation was interesting, and I tried to act animated as I
talked about myself and listened to him, but I had something else on my mind.
An hour after our arrival, I noticed his movements had slowed. I allowed the
conversation to taper off. He closed his eyes. I quietly stood up, turned off the over-
head light, and sat back down next to him. His eyes fluttered open. Co to jest? he
asked, gesturing toward the darkened light. Its okay I assured him. I placed my
hand on his crotch. No he said, displacing it. I reached into my pocket and pulled
out a fifty zloty note. I extended it to him. He looked at it for what seemed like a very
long time. Then he sighed, took the fifty (eighteen U.S. dollars), stood up, walked to
the center of the room, took out his wallet, carefully folded the note, placed it into
his wallet, and then repositioned himself next to me. The orchestrations, while im-
pressive, did not obscure the realization that he was mine.
He moved well, doing things that I did not expect him to do or to allow me to
do. Toward the end our eyes met. To my surprise, he leaned in and kissed me, pas-
sionately, lingeringly.
When it was over, he once again became his talkative self. He wanted to have a
drink in the city center. I declined. Im tired now, and I must travel to the United
States tomorrow for a quick visit. I need to rest. He seemed genuinely sorry to leave.
The experience was nice, but I could have done without the kiss, which I enjoyed
a little too much.
Laws change to take into account modifications in cultural norms. The Cox
case bears this out. During the course of his trial, the prosecution unsuccessfully
attempted to include evidence of an earlier arrest. In 1991 Cox had been arrested
at a rest stop in Gwinnett County, which is adjacent to Atlanta and includes many

of the citys suburbs. He had been arrested for propositioning an undercover
Georgia Department of Transportation officer. He entered a no contest plea
to the charge and was issued a fine of five hundred dollars and a one-year sus-
pended sentence. During the Cox and Martin trial in 2004, the judge refused to
hear this evidence on the grounds that the more recent case involved soliciting
a minor for pay, while the previous one involved an adult with no offer of remu-
neration; and in 1998 the Georgia Supreme Court invalidated the states sodomy
law, allowing the act to occur when it involved consensual, noncommercial sex
between adults in private.
The kind of jurisprudential rethinking evidenced in the Georgia Supreme
Courts decision in 1998 is an incentive to reevaluate the states AidS criminaliza-
tion law, the same law that penalized Carriker. One major problem with the cur-
rent law is its failure to distinguish among types of sexual practice. The Centers
for Disease Control (headquartered, ironically, in Atlanta, in the same county in
which Carriker was convicted) has differentiated among sex acts along the lines
of risk. Performing oral sex on an individualwhich Carriker did and which
Cox offered to dodoes not carry the same risk as anal or vaginal sex. None-
theless, the acts are prosecuted in the same manner. This is indicative of a failure
in policy. The law should be updated to reflect biomedical knowledge about risk
and transmission.
The time had come to leave Poland. The train was scheduled to depart Bielsko at
3:45 a.m., arriving in Warsaw at 8 a.m. From there I would fly to Zurich for a con-
ference. After that I would begin my new life as a PhD student in England.
I had spent the day saying goodbye to friends, cleaning up my flat, and reading
Wilkie Collins. Now, at 2 a.m., all I had to do was take out the trash, give the flat
one final once over, and allow time to pass.
The street was as quiet as usual; the air crisp, courtesy of a cool mountain breeze.
I deposited the bag into the trash receptacle at the end of the street and turned back
in the direction of the flat. I saw him watching me. He was walking across the street
in the same direction I was headed in. Without hesitation, I approached him and
flashed the fifty zloty note. I gestured for him to follow me, holding onto the note.
We entered the foyer and proceeded into the flat. Once inside, I closed the door,
tossed the keys and the note on the table, and dropped to my knees. I unzipped him
and put him in my mouth. I like women, he protested weakly. He spoke in English
but I did not pause to ponder this. I kept moving, working on his balls now. I like
women, he reiterated when I indicated that he should lower his pants. I believe
216 Chris Bell

you, I mumbled, appreciating how readily he complied with my unspoken demand
while simultaneously placing his hand on the back of my head to guide me.
Before long, I was on the bed with him beside me. He was clothed, although his
shirt was pulled up and his pants were pulled in the opposite direction. I wasnt
wearing anything. I began to finish myself off. As I did so, I noticed him watching
my technique. This was a turn-on: a man who likes women lying with me on a
bed and watching me jack off. I came quickly, placing my mouth on his neck as I
did. He did not protest, nor did he take his eyes off of the spectacle I was creating. I
was very proud of myself.
He took his time buckling up. Then he took a spin around the flat. He seemed
quite comfortable and began to strike up a conversation. I half participated, ex-
plaining that I would be leaving for Zurich shortly. I was still reveling in the impos-
sibly simple seduction, while also thinking back to a conversation I had had earlier
that summer with Darek, an individual Id dated for a short time.
You pick men up on the streets here in Bielsko? How? Its impossible.
Its not as difficult as you might think. I mean, if you think about it, thats how
we met.
What are you talking about? We met because Jacek introduced us.
And I met Jacek one afternoon when I got off the train and walked past him
on my way home. Im telling you, its simple. People just want to be with someone,
to touch someone, for a short time. I provide that with no strings attached. Whats
wrong with that?
When it came time for me to leave, I walked out with my baggage. He preceded
me into the hallway. I placed my baggage on the floor and locked the door. I ex-
plained that I had to go upstairs to place the key in my landladys mail slot. Without
waiting for a response, I dashed up the stairs. On my way back down, I heard the
front door slam; the echo reverberated throughout the hallway and the stairwell. I
wondered if he had taken the bag with my laptop in it or the one with my passport.
He had claimed neither. I can only guess that he had had enough for one night and
was on his way home to fail to remember. I picked up my baggage and headed into
the night. It wasnt until I was an hour into The Woman in White on the train to
Warsaw that I realized I still had the fifty zloty note.
In the 1980s and 1990s, social spaces in parts of the United States underwent a
dramatic change from relatively liberal environments wherein pleasure could be
sought and found to increasingly staid environments wherein pleasure might be
sought but at the risk of not being found and incarceration. The prime example

of this sanitizing of public spaces is New York Citys Times Square, often referred
to as the crossroads of the world. Whereas Times Square had previously toggled
between a destination for families (the Broadway Theater district and the host
of hotels and restaurants surrounding the district) and a destination for sexual
hookups (peep shows and strip joints), by the twenty-first century, the white-
washing of Times Square was complete. The crossroads of the world had erected
barriers at its borders, which aimed to keep sexual perversion out.
In Times Square Red, Times Square Blue, Samuel Delany comments on the
sociocultural shift that occurred in Times Square in the late twentieth century:
As a sign system, what the neon visibility of sex shops and peep shows
and porn theatres signaled to people passing by was: Unattached men
(or men whose attachments are, however temporarily, not uppermost in
their mind), this is the place for you to spend money. Such men have tra-
ditionally spent freely and fast. Though some of them are gay, as we all
know most are not. Remove those signs in an area where once they were
prominent, and its like reversing the signal: Now it means that men with
attachments can spend their money herewhich is often men with a great
deal more money, men who want to spend it in business. (95; emphasis
in original)
The Times Square of the pre-1980s allowed men of all races, ages, and sexual
orientations to come together. But once it was determined that the site was not
honoring its potential as enough of a revenue-producing force, it had to be re-
invented: the city wanted to get the current owners out of those movie houses,
J/O Clubs (Jack Off Clubs, advertised as just that on the marquees), and peep
shows, and open up the sites for developers (Delany 91). But where were the
patrons of these venues supposed to go? In the 1980s and particularly in the pre-
combination therapy 1990s, an era in which AidS scapegoating often operated in
an unabated fashion, this was not a question that warranted discussion, let alone
a comprehensive response from city officials. Out of sight, out of mind, conven-
tional wisdom dictated.
Arguably, for those who did patronize the now-vanished sex clubs and movie
theaters in Times Square, the shuttering of those establishments did not cre-
ate a catastrophe insofar as access to each other. Public parks and washrooms
retained their appeal, and later the Internet would also facilitate the search for
casual sexual encounters. However, the loss of the Times Square sexual free zone
218 Chris Bell

should not be casually dismissed. Indeed, as Delany argues, it might be viewed as
an immensely effective salvo against freedom of sexual expression.
Im not happy here, I kept repeating to my PhD supervisor. I need to be some-

where else in order to be productive. That somewhere else ended up being Poland
once more. After a depressing three and a half months spent in the UK, I was re-
turning to my adopted country to write my thesis.
But I would not leave for another week. It was the New Year and Nottingham
was decked out accordingly. I walked through the Old Market Square, desper-
ately attempting to ignore the crush of activity. Its two oclock in the afternoon,
I thought. Shouldnt these people be home nursing hangovers? As I walked past
McDonalds, I saw him: cute, young, and asking for assistance. He was the perfect
target, but something held me back. He asked me for money, and I brushed past
him without making eye contact.
I thought about him throughout the afternoon. Around 5:30, curiosity got the
best of me. I realized that there was no likelihood that hed still be there. I also real-
ized that I had lived in this city for months and never seen him before, a fact that
decreased the likelihood of his presence even more. But he was there. And I was
prepared.
As I approached, he made his plea. I flipped him a two pound coin. He clasped
his hands together, performed a little bow, and thanked me profusely. I walked
around the block. As I came up on him again, he began to make his plea. When
he recognized me, he stopped and thanked me again for the money. I recognized
his sincerity as a performance, but I was taken in. I stepped up to him and, sotto
voce, in the midst of the activity in Old Market Square, said, Ill give you twenty
pounds more if youd like. His eyebrows raised and his lips parted in reply but no
words came out. Finally, he nodded and said, Yes. Thank you. We began walking
homeward.
His name was Jon; Ill never forget that. He had been living on the streets since
his stepfather had thrown him out of the house several months earlier. He had had a
few run-ins with the law in Sheffield but was trying to do the right thing by relocat-
ing to Notts. His father was in Spain, and he hoped to go there someday to be with
him. As he talked, I couldnt help but want to hear more. I found him fascinating.
I wanted to protect him.
What is this place? he asked as we entered the rambling home I shared with
eleven other individuals.

Oh its a place where a bunch of students live. Were all from different countries,
and we study here.
Its nice.
Cmon, I said, beckoning to him to follow me upstairs to my room.
No, Id better stay here. I, ah, dont want to get blamed if something comes up,
um, missing.
I did not tell him that all of my housemates were away for a few more days and
that we would be alone for some time. Its not that I thought something untoward
would happen if I told him, so much as that I had the confidence that nothing would
happen as a result of my disclosing this. So why waste the words?
I bounded to my room and pretended to retrieve the twenty-pound note that
was already in my pocket. Back downstairs, I handed it to him. Again, he thanked
me with unfailing politeness, and I felt something for him again.
Would you like something to eat?
Thats right nice of you, but I dont want to be a bother.
Its no bother. Come in here.
We entered the kitchen and I listened to him marvel at its size. I reminded him
that twelve college students lived in the house; hence, the dual refrigerators, stoves,
and ovens, and the massive space in general. I began to make him a sandwich,
spreading black currant jelly on the bread. When I began to do the same with the
peanut butter, he intervened, saying that he did not like peanut butter.
Would you like more jelly then?
Yes, I would.
I handed him the knife and encouraged him to make his sandwich as he saw fit.
Thanks a lot. Youre cool, and youre also really photogenic. You should model.
This caused me to laugh and protest.
Youre American, arent you?
Unfortunately.
From whereabouts?
The last place I lived while there was Chicago, although Im originally from St.
Louis.
Chicago. Id like to go there someday. Id like to go to a lot of places someday.
I never saw anyone down a sandwich that swiftly. I urged him to make another.
He did and ate it just as swiftly, while talking about Michael Jordan and the Chicago
Bulls. Despite the large size of the room, we stood next to each other at the counter.
He emitted the stale odor of sweat and desperation. This detracted from his appeal.
220 Chris Bell

I should go now. But thank you for being so nice to me. And good luck with
your studies. Maybe Ill see you around someday and I can thank you.
I didnt really want to do it, but I couldnt think of anything else to do or say that
would make him stay. And so I caressed the outside of his sweatpants and explained
that he could thank me in that moment if he wanted to. I regretted it instantly. His
expression clouded and he seemed genuinely disappointed. I had changed in his
eyes.
Ill do it, I mean, Ive done it before. But youll have to pay me.
He was a businessman through and through.
What about the twenty quid I gave you?
You said that was mine! You said I could have it!
He was insistent and, for once, was making me uncomfortable.
But I didnt get anything for it.
He began to pace back and forth, looking at his watch.
Look mate, I gotta go. I gotta take this money and go get a hit. I like to shoot up.
He raised the sleeve of his jacket to display a line of deeply embedded track marks
along the length of his left arm.
I gotta go score with this dude before its too late. Its twenty-five quid and I got
it. But I can come back later.
His agitated mood had turned me off almost as much as my propositioning him.
I was no longer interested, just curious.
What do you do when you shoot up?
Heroin and crack.
Oh.
He provided detailed instructions on how to mix the concoction with a spoon
and what to do with it. And then:
Do you want me to come back later?
No, thats okay.
I can come back later tonight or tomorrow.
I leave for Scotland in the morning and I wont be back for a few days. After
that, Im going to Poland for several months. Dont worry about it.
Oh.
I could not let him leave with the memory of his arm so firmly embedded in my
memory.
Do me a favor though. Just show me your dick.
He thought about this for a few seconds and then he slowly began to untie the

white ribbon of his sweatpants. As he lowered them as well as his shorts, he gri-
maced, allowing, Its not very big. I looked, and then he left.
I thought about Jon for some time afterwards. Occasionally, I still do. I smile
when I recall his reference to me as photogenic. I wonder if he ever made it to
Spain. Im awaiting a resolution that will probably never come.
In viewing the space of the city as a sexual free zone, it is not uncommon to
view it as an incubator of AidS as well. From Boys on the Side to Longtime Com-
panion to, of course, Philadelphia, the city is often depicted in AidS narratives
as too free a sexual free zone. The city as AidS incubator in contraposition to
the rural town as protected terrain is a theme briefly alluded to in Delanys text.
Describing one of the citys AidS tragedies, he recalls this conversation: You
remember your little hustler friend Mark? a redheaded hustler, Tony, in black
leather pants and black leather jacket, who specialized in heavy S&M topping,
told me one evening, elbow to elbow with me. . . . Two weeks before he died, we
all got together and sent him homeupstate to Binghamton. He wanted to die at
home. So we sent him there. And he did (48). While it may not be accurate to
describe Binghamton, New York as rural, the space is certainly not as urban as
New York City. Accordingly, it is not enough to report that Mark was sent home.
It should also be stressed that he was sent out of the city. The return of Times
Square and other urban locales in the United States to spaces not of sexual plea-
sure, but of family values, is, in a sense, a return to the model of the colonial
and settler family, whose members kept each others best interests in mind and
shunned outside interference. Rural areas, although they can be depicted as wild,
unexplored terrain, are most often envisioned as wholesome spaces of peace and
tranquility. Rural life is assumed to be safe life. Judith Halberstam notes, Delany
suggests that we break away from the cozy fantasies of small-town safety and big-
city danger, and reconsider the actual risks of different locations in terms of the
different populations that inhabit them. Specifically, he recommends that we not
design urban areas to suit suburban visitors (Queer Time 15).
Within spaces where public sex is accessedbathhouses, movie theaters, sex
clubsthe disclosure of an hiv-positive status does not always occur. This is not
surprising given the emphasis on anonymity in these venues. As Stephen Murray
observes: Even in metropolises with venues for male-male sex, many men who
have sex with men seek to keep their desires from being known (i.e., as part of
their public persona) and do not reveal their names to sexual partners. Anony-
222 Chris Bell

mous sex can be seen as more private than sex in bedrooms shared by people in
ongoing relationships in that most everything about the self remains unknown
to sexual partners in anonymous encounters (161). To reiterate, people do not
always disclose their status in sexual free zones (or elsewhere for that matter).
But that does not mean they are lacking in moral fiber. It implies that those act-
ing in sexual free zones realize that they are occupying a space in which the rules
(read family values) of the outside are not in effect. Within the sexual free zone,
a different (but not necessarily inferior) code of conduct is practiced.
Im in St. Louis, having come from the doctors office. I had spent six additional
months in Poland. One day, during the sixth month, I noticed lesions on my left
leg. I had been waiting for this moment for nearly eight years; the moment when
AIDS began to make its presence unmistakably known. I thought about contacting
Darek, the doctor Id dated the year before, but I opted not to. I decided the best
thing would be to return to the States, where it all began.
Having no health coverage, I was forced to rely on the services of the Ryan White
CARE program. Prior to accessing those services, I was required to have an intake
with a case manager.
Our meeting was fairly mundane, involving lots of paperwork and signatures.
One of the forms I was obligated to sign prior to receiving services pertained to Mis-
souri law RSMo 191.677, which reads, in part:
It is your responsibility to alter your behavior so that you do not expose other
people to the HIV virus. Criminal charges could be filed against you if you
know you carry the HIV virus and you create a risk of infecting another per-
son (for example: your partner) with the virus through sex, needle sharing,
biting or other established means of transmitting the virus.
Violation is considered a Class B Felony, punishable by five to fifteen years
in prison or if the other person contracts HIV, a Class A Felony, punishable by
ten to thirty years or life imprisonment. The use of condoms is not a defense
to this violation.
At the conclusion of our meeting, I received a copy of all of the paperwork. I

took it and used it to attain a doctors appointment. The lesions were biopsied and
were revealed to be nonharmful. Shortly thereafter, I successfully interviewed for a
teaching position in Baltimore, which would have me leaving the state of Missouri,
and its laws, behind.

Prior to leaving for Maryland, I discarded all of the case management parapher-
nalia except for my copy of RSMo 191.677. It came with me to Baltimore, where I
still have it tucked away.
Restricting access to sexual freedom in Times Square, Delany asserts, ren-

dered the space safe in fraught ways: Desire and knowledge (body and mind)
are not a fundamental opposition; rather, they are intricately imbricated and
mutually constitutive aspects of political and social life. . . . [W]e might give more
thought to the necessary and productive aspect of this imbrication of knowledge
and desire as it expresses itself so positively in so many forms of contact, be-
forewith a wrecking ball and even more sweeping legislationwe render that
central structure asexual and safe in the name of family values and corporate
giantism (16869).
The politics of containment are alive and well as evidenced in: the Cox and
Carriker cases, the questionable laws in Atlanta (which is often referred to as the
New York of the South) specifically and Georgia overarchingly, and the (mis)
management of urban spaces such as New York. It is not enough to cleanse main-
stream culture of individuals such as Cox and Carriker; it is not enough to re-
invent sexual free zones as sanitized playgrounds for the mainstream masses. As
John DEmilio has argued regarding the gay liberation movement: The accep-
tance of our erotic choices ultimately depends on the degree to which society is
willing to affirm sexual expression as a form of play, positive and life-enhancing.
Our movement may have begun as the struggle of a minority, but what we
should now be trying to liberate is an aspect of the personal lives of all people
sexual expression (Capitalism 474).
These individuals and those zones offer opportunities to interrogate the codes
that sustain us to our delight and constrict us to our disadvantage.
I have lived in Baltimore for nearly two years. Picking up men on the street here is
amazingly easy. I remember:
The first one, the one who passed me on the street one Friday night and asked for
help. I replied that Id give him twenty dollars. We walked to my apartment, which
was just steps away. While I relieved myself of the alcohol I had just imbibed, he sat
in my living room. When I finally returned, I gave him the twenty and made my
request. He agreed and even gave me instructions on paying particular attention
to the head because that made him feel good. He also apologized for not being as
fresh as he could be due to sweating while sitting in jail most of the day. We wound
224 Chris Bell

up in my bed for a few brief moments, but he grew uncomfortable because he kept
thinking about getting home to his young son.
Another one, whom I passed in an alleyway. He offered to sell me a watch. When
I asked the price and he replied seven dollars, I made him an offer of twenty if hed
do my bidding. He agreed immediately. As we walked back to my place, he kept
asking if I was a cop, because this was just too good to be true. I was chagrined
when he couldnt perform. He was too, and he chided me mildly for not having any
porn for him to view, because thats how youre supposed to do it. He left without
the twenty and in somewhat depressed spirits since, as he termed it, he could have
used a good nut.
The one on Thanksgiving who whistled after me while I walked down an alley-
way. I stopped and said What up? to which he ineffectually replied You. I began
to walk away when he called after me. Ive got ten inches. Show me, I countered.
And there, against the wall in the alleyway, he started stripping, first removing his
shirt. When I saw the muscles, I stereotypically began to think of prison gyms, but
I quickly pushed that thought from my mind. Before he had a chance to unzip his
jeans, I said, Youre coming with me. He was very friendly on the short walk home,
apprising me that hed come up from Virginia with a girlfriend who had left him
and how he too hated Baltimore and wanted to go elsewhere. At my place, he spent
time in the bathroom soaping himself up and then came into the bedroom and sug-
gested I do the same. I tend to stay clean, I replied. After a sufficient period of time
with him in my mouth, I was ready to move on, but, as he claimed in suggesting I
continue, Weve got all night. Actually we dont, so lets fuck and get on with it.
This put pressure on him and he remained soft. He grew angry, and I asked him to
leave. He became belligerent and loud when I declined to pay him. I finally got him
outside where he stood in front of my apartment for several minutes banging on the
window, declaring, I know where you live. Obviously, I said to myself. Im sure
my neighbors loved this.
The hairy one who wanted to screw with the lights on so he could see me. He
tried very hard, and even broke a dripping sweat. But try as he might, he could not
insert part A into part B. The tightest ass Ive ever seen, he repeated over and over.
He too got nothing.
The failed one whom I approached outside of the Central Library on one excep-
tionally hot afternoon and offered twenty dollars to perform. How bout I give you
an ass whipping for free? I threw up my hands in resignation and walked away to
the sound of I hate fuckin faggots over my shoulder.
The eager one who seemed so happy to have me pick him up and made no secret

of being impressed by the luxury apartment I struggle to live in. As we entered the
building, I was thankful the doorman was elsewhere, although I felt tense sharing
the elevator with my visitor and another tenant. The act itself was swift and to the
point. Afterwards, he asked for forty dollars. I offered thirty and a Pellegrino, which
he accepted. As he left, he commented, Youre a good guy.
Ive resigned myself to the fact that this is the way my life is. Perhaps these dalli-
ances will decrease in frequency; perhaps they will increase. I doubt theyll ever stop.
The action is a part of me now. Im making myself happy by making other people
happy. Its what I do because Im a good guy.
The aims to legislate codes of conduct of hiv-positive individuals under an

ideology of responsibility may have been effective when modes of transmis-
sion were still unknown, but that time has long since passed. This is the hiv
age of reason when hiv transmission laws should be categorized by measurable
level of risk and, even then, reconciled on a case-by-case basis. Denying the hiv-
positive subject access to a variety of sexual experiences through the threat of
litigation and incarceration is supremely ill-advised because doing so, initially,
does not work and, more importantly, forecloses possibilities of pleasure. In the
final analysis, it is important to be mindful of the health status of both the hiv-
negative and the hiv-positive partners as, drawing on an early safer sex slogan,
protection is the priority. In the case of negative individuals protection pertains
to not contracting hiv, while in the case of positive individuals protection per-
tains to preventing reinfection. But this is not all. It is also important to consider
the oft-maligned and rarely discussed wishes of hiv-positive individuals because
the protection of sexual desire must be a priority too.
An additional conclusion is warranted.

I was twenty-three years old when I was diagnosed as HIV-positive; I am now
thirty-four. Previously, I never would have imagined that I would pay individuals
for sex or that I would do so while not, in some instances, disclosing my status. Im
not the man I used to be. Admittedly, I may not be responsible as determined by
conventional norms, but that doesnt immediately relegate me to the realm of irre-
sponsibility. Some of my behaviors might dwell in that realm, but I dont have to be
positioned there, or position myself there, in totality or permanently. I can occupy a
middle space, moving toward and away from responsibility and irresponsibility as
circumstance, agency, and desire dictate. While I would prefer to remain as rooted
as possible in the realm of responsibility (because I have been socialized to believe
226 Chris Bell

this is what I should do), there are aspects of that other place that I find fetching.
Sometimes irresponsibility works for me and, I believe, is not as harmful as it is
posited as.
In a similar vein, just as I do not always have to perform responsibility (or re-
sponsibly), mainstream culture does not always have to demonize me for engaging
in sex practices. To reiterate, I was twenty-three when diagnosed; Im thirty-four
now. It is ludicrous to imagine that I have not engaged in sexual activity during the
intervening years, and it is foolish to categorize all of those actions under the um-
brella term sex. Indeed, I wonder, what is sex? Its a given that oral sex is not the
same as anal sex, but that fact does not stop them from being equally criminalized
in some locales. If I engage in mutual masturbation with an individual, which may
or may not involve our bodies actually touching, must I disclose my status? Redefi-
nitions are called for and a discussion about the applicability of those redefinitions
is in order as well. We can also realize that we live in a culture of risk in which en-
gaging in sexual activity with any individual, with or without consent, can lead
to complications. On that score, I wonder what happens if an HIV-positive subject
makes it a point to disclose his status prior to the sex act, but the partner claims he
did not? Its very clear to me who will be penalized in this instance.
Writing in Fearless Speech, Michel Foucault summons the Greek concept of
parrhesia, frankness in speaking the truth (7). He explains that the commitment
involved in parrhesia is linked . . . to the fact that the parrhesiastes [one who uses
parrhesia, thus one who speaks the truth frankly] says something which is danger-
ous to himself and thus involves a risk (13). Risk is at the heart of this chapter. Of
course there is the obvious risk: the question of individuals placing others in danger
of contracting a deadly virus. There is, as well, the risk of having pleasure stymied.
But there is another risk as well: the risk an individual takes by speaking of his ac-
tions truthfully. As Melvin Dixon asks: What truthtelling are you brave enough
to utter and endure the consequences of your unpopular message? (200). Perhaps
in telling stories of my life Im tired of being good; maybe Im trying to be and do
better. I wrote this; I inserted myself into it; I admitted knowledge of wrongdoing;
but mostly, I have tried to reach for, to access, the truthtelling Dixon imagines. I
call upon others both in and out of mainstream culture to truthfully examine their
own actions and to try to follow the same path.

noteS
Chris Bell died on December 25, 2009, while final revisions were being made on this
chapter and volume. The version printed here was prepared for publication by the edi-
tors, based on conversations with Bell prior to his death. Beyond minor copyediting,
the words are his own.
1. Recall the treatment of hiv-positive subjects in Cuba in the 1980s who were quar-
antined in state-sponsored camps.
228 Chris Bell

IV
liveS
11
RiVa lehReR
golem girl getS luCky
tHe CaStle
The keys are already in my hand as I come home again. The sight of the long iron
fence in front of my building makes my spine prickle with metamorphosis. The
big security key turns easily in the first lock, but the gate itself is so heavy that I
have to throw my whole body against it to swing it open. It feels good to press
my skin against the cold, simple rods. All those thousands of iron gates all over
our city; every one a testament to the fact that iron has been used as a divider
between worlds for centuries. Iron is an ancient, eldritch charm against demons
and faeries, able to divide the world of monsters from the world of men. This iron
threshold marks the line between the hard-shell body I wear in the street and the
soft stitched-up skin of my animal self.
The sounds of coming homethe turn of a lock, the squeak of metal, the
closing clankare my quiet incantations for the protection of monsters.
Most days, my buildings gauntlet of security gates and doors grants me sanc-
tuary. Each one that closes behind me lets me drop another defense. But not
today; today Im not alone. Youre coming to my house for the first time. I glance
at you from the corner of my eye and feel all over again the fierce hopes you have
raised in me.
We walk together through the lush courtyard full of plants all waving a shrub-
bery green welcome. Theyre offering you the warmth I cant quite give, yet. The
courtyard echoes with our footstepsone even beat, one erratic tattoo. More
keys, more doors, both of us quiet, small words and sideways looks.
You look tense. Maybe youre just spooked by the elevator, which scares the
bejesus out of everybody. Its an antique birdcage with a positively carnivorous
brass scissor gate. The machinery does its menacing clatters up to my floor, lay-
ing on a full repertoire of horror movie sound effects. At least this makes us both
burst into laughter. After all that my actual door is a bit of anticlimaxan ordi-
nary dark wood slab festooned with an urban compilation of locks, chains and
deadbolts. The only oddity is that the peephole is set very low.
Three last twists of the key, and were in.
Oh. Wait. No, were not. Where did you go? When did you go? I guess, after
all, you were spooked by me.
tHe Street
I try to be surprised, but this is hardly the first time that someone couldnt quite
cross the line. At least now the door is locked behind me, and I can finally forget
my size, my shape, and my way of walking. The street armor falls off in layers and
dissolves on the floor. I am naked with relief and angry at the safety of solitude.
In reprieve from the sidewalk.
Safe for now from the narrow strip of pedestrian road where Us collides
with Them. My unpredictable gait turns it into a slalom course. I zigzag through
the crowds with my eyes fixed on my traitorous feet. Even the empty sidewalks
skirmish with my body. Theyre angled toward the traffic so that rain and litter
tumble toward the gutter. But my ankles are unstable, and this slant can pop the
tendons right out of their sockets. I have to keep changing what side I walk on
to keep the stresses even. This must make me look either lost or paranoid, like I
think Im being followed.
On the other hand, my ankles provide an excellent reason not to look up. I
can pretend not to see the staring, the gaping, the swiveling, opaque, one-way
eyes. To maintain ignorance of the necks whiplashing back and forth with in-
stant judgment. True, ignoring them often results in some sharp pebble of public
cruelty, such as the always popular Whats wrong with you? Hey ugly chick. Are
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you a midget? Are you a dwarf? Man, lookit her shoes. Hey if I looked like you,
Id kill myself.
Even the stares of children go in deep. Innocence leaves its own burns. So
I pancake myself into the brickwork or move in oblique angles to the traffic or
shove through the crowd hard as an icebreaker. Walking through a tangle of eyes.
Eyes raise, eyes meet, eyes slide away, eyes widen, eyes lock, and eyes are cast
down.
We animals learned to stare at each other millennia ago, before we were
humans, when we were still prey and predator both, leaping through trees and
running over savannah. Where learning to tell pack mate from interloper, carni-
vore from herbivore, alpha from omega was a matter of immediate survival. But
in the modern city, we dont worry too much about nonhuman eyes.
Today we navigate a daily pageant of human variation. The fear is more ab-
stract and the judgments more subtle. The pageant teaches us both desire and
repulsion. All those different bodies offer a catalogue that lets us discover the
shape of our lusts. Our libidos become engorged on memories of bodies weve
briefly seen. Shapes flicker like flash cards strobing a route between head, heart,
and pelvis.
All women know that the sidewalk is a catwalk. From before the first faint
ringing of puberty we are judged on the quality of our flesh. And my entry in
the pageant is a body thats more Z-shaped than S-curved. Soft tissue hung from
angular and wayward bones. Not built for the performance of Womanhood. She
should sway with a spine strung in a sinuous rosary of bones, with brain at one
end and cunt at the other. She should undulate with a hide-and-seek of the hips
and the breasts. Animate her armature of fertility. Sometimes we punish her for
the power of her gravitational field and call her a Streetwalker.
Some women opt out of the pussy dance and choose kinetic defenses, stomp-
ing like battle-limbed warriors or pulling a shroud around their sex. Old women
disappear into a slow molasses of obscurity, even when they fight to be seen. I
can see the day coming when the shape of my body will be chalked up to age and
I will join the ranks of the Invisible Women.
Until then, I will be one of the crip girls whose bodies scare the panel of
judges. They are afraid that our unbalanced shapes hint of unsanctioned desires.
On both sides of the bed.
My friend Eli says that any three crips walking together is a parade. Thats be-
cause even though weve always been here, we lived in back rooms, in attics, and
nursing homes, trapped by stairs and manual chairs and sheer bloody prejudice.
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We began to appear along with curb cuts, electric doors, and kneeling buses. Our
slow emergence seemed to engender a confusion. The long absence meant that
society never evolved a social contract that interprets the movement, the lan-
guage, and the culture of gimps. Some of us are structurally remarkable; some of
us move or speak or stare back in ways that are Different. Canes and chairs and
dogs disrupt the pedestrian flow. The crowd streams around us like rocks in the
river, staring at and ignoring us in strange proportions.
In the sidewalk mating dance were winnowed out as undesirable breeders.
They dont look long enough to decide whether were attractive or not. The pack
just knows prey when it sees it. We bear the eyes of primates whose curiosity
has turned toxic.
Up inside my apartment I look out the windows and watch the people seven
floors below. I trace the path through the courtyard that we took inside. It was
so hard to look you full in the face. Would you have followed me all the way in
if I had? Its a very sexual problem, this custody of the eyes. Because, after all,
a lovers regard begins as a strangers gaze. When I saw you for the first time it
was an accident. Some momentary unguarded glance in the park, at a party, in
class, I cant remember. And I dont know how to flirt with you if I cant look at
you. Your eyes promise both transcendence and disaster. I wait for your words to
make it safe to see you. Until then, my peripheral vision is sensitive as a bruise.
my motHerS HouSe
I was a frozen child in my mothers house. She was frantic to protect me from
what might happen when and if I did grow up. After she tried so hard to help me
survive, the future slowed down and became a place where I was not allowed to
ripen. My puberty threatened to elide straight into Sleeping Beautys cryogenic
coma. She tried to keep me in her maternal stronghold so that I could remain
unthreatened by the desires of men.
My mother used to sew me clothes that matched her own outfits, even making
identical doll clothes from the leftover scraps. As a little girl I was so proud of
these outfits, and of looking just like Mommy. But as I grew older her creation
of me did not change. Mom was a big woman and downscaled her own caf-
tans and muumuus into little tents that hid me completely. And it was clear that
everyoneDad, Grandma, Grandpa, Aunt Ruth, Aunt Sarah, Uncle Barry, Uncle
Lester, all my cousins, doctors, nurses, teachers, housekeepers, neighbors, milk-
men, and the Rabbiall agreed that my safest place was in hiding.
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238
Despite the mummification by wardrobe, there was recognition of my gender.
My bedroom had pale-pink walls, white-and-gold French Provincial furniture, a
flowery duvet and pink chiffon draperies. Ironically, I hated all of it and repainted
everything black and yellow when I was twelve. This made my grandmother
utterly distraught. Then there were the pretty girl attempts; for parties, Mom
would curl my hair with heated tongs into a style that looked like it had been
dropped onto my head. But my gendering had a vestigial, dead-end quality. My
family assumed that any relationship with a boy was either a hopeless prospect or
murkily dangerous. I was told, with dreadful kindness, that I should never expect
to marry. In the darker versions of my fairy tale, where sex actually loomed, the
Big Bad Wolf would use my body simply for its unacceptable, discardable help-
lessness.
The one great hope was that Id find a nice crippled boy, and we would take
care of each other in sweetly platonic fashion.
As I became a teenager my mother insisted that I never shut my bedroom
door. I suppose this was in aid of keeping me from getting in touch with my
hormones. She snooped around my room all the time (calling it housekeep-
ing). One day she discovered that I had a crush on a boy; she found Id cut his
picture out of a yearbook and put it in a locket. She made jokes about that locket
to everyonejokes that seemed to say that I had done something totally bizarre
and inappropriate by even having a crushuntil I was completely mortified.
People would ask my female cousins and my female friends if they liked any-
one. Never me. My feelings about boys turned ingrown and confused as a toenail.
Even when Mom stopped making my wardrobe, I still was not allowed to
pick out my own clothes. Mom and Grandma filled my bedroom closet with
unisex polyester shirts and elastic old-lady double-knit pants in mod diamond
patterns. For special occasions there were deeply traumatic dresses: a clutch
of brownish plaids and infantile flowered cottons, all of them smocked, puff-
sleeved, and baggy as hell. It wasnt even necessary for me to be along when
these items were purchased since fitting was a relative term. Grandma sewed
me floor-length elephant bell-bottoms in order to hide my orthopedic shoes. But
since Im under five feet tall, the pants made me look like I was walking around
in a trench. My outfits formed a spectacular camouflage of puerile design.
Unsurprisingly, when I finally started buying my own clothes at eighteen, I
dressed like a hooker in a storm cellar. After that phase I promptly retreated into
bulky disguises of my own devising. It took me years to figure out what looked
Golem Girl Gets Lucky 239

good on me, since I panicked every time I saw my body actually defined by my
clothing.
And still I have no idea what I look like outside my fears. All I think is: I pro-
trude.
tHe CloSet
Crip girls wear plunging necklines to draw the eyes away from our bent backs.
Long velvet skirts cascade over our leg braces. Short skirts skim away from the
scars on our bellies. Tight pants deflect your gaze from the tremble in our arms.
Gold and silver ornaments advertise the charms we are allowed to flaunt. Wed
like a great tumble of hair to hide in. We know, completely, whether our breasts or
legs or hands or eyes or maybe just our voices are our best features. Our hopes
of desire are condensed into these segregated, illuminated parts. We use magic
spells and incantations to make the rest of us disappear.
tHe ClaSSroom
I knew plenty of other children mired in parental wardrobe witness protection

programs. Both boys and girls came to school in garments meant for giant in-
fants, at Condon School in Cincinnati, an elementary school for disabled chil-
dren. By sixth grade we presented a picture. It was the 1960s, after all, and kids
our age were not wearing potato sacks.
As we reached puberty there was mass adult panic whenever we acted our
hormonal age. We played out a round robin of infatuations in our tiny classes. My
earliest crushes were on boys with: spina bifida, cerebral palsy, achondroplagic
dwarfism, and spina bifida, again (hey, its a popular birth defect). Also I had a
crush on a girl with juvenile arthritis and cataracts. We acted out our crushes as
far from teachers, therapists, or the dreaded school nurse as possible. Otherwise,
we were subjected to long, mutually embarrassing lectures about appropriate
behavior, which amounted to self-neutering lessons. When it came to sex, every-
one forgot that we were children with full medical educations in the human body.
Sex was the one incongruous area where we were kept rigorously uninformed.
The school even fired our art teacher for giving us informal sex-ed lessons, which
mostly meant that he let us hide in the art room during free periods so we could
talk a little dirty, say penis, and have shrieking hysterics. It followed that the art
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room became the rumpus room, where boys on crutches would chase after girls
in wheelchairs in laps around the craft tables.
Outside of special school, I saw the normal girls being prepared for woman-
hood. Early gifts of kitchen toys and playtime makeup led to prom frocks and
high heels. Womens studies has taught us to see the damage caused by rigid gen-
dering. But there is a different kind of confusion and hurt caused by its absence,
when its clear that youre not being included because youve been disqualified.
Disabled women must continually claim their gender in the face of active era-
sure. Equally, disabled boys are often deprived of routes to masculinity. Parents
of disabled children get inculcated with the message that letting us enter the
sexual marketplace will only cause us pain and rejection.
Crips of my generation grew up without knights in prosthetic armor, with-
out deaf princesses, spastic vixens, or any inkling of future X-Men. Dolls were
monotypes. GI Joe was built of ruthlessly working parts and had yet to experi-
ence tbi or PtSd. Not that were awash in gimpy role models now, but there were
none outside of a telethon then. I vividly remember a few made-for-TV movies
in which a normal person (usually female) would be attracted to a disabled per-
son (usually male). Especially popular was the blind girl next door, given that
she could be beautiful and wear a mysterious expression (and stylish shades).
Attraction to a crip was a display of the hero and heroines moral perfection. Or
in the horror flicks, either the crip or the normal was damaged or sick, in thrall
to unnatural desires. I cant think of one love story from back then that led to a
believable happy ending.
art SCHool
Even now, no one is more amazed than I that I dont actually live in my mothers
pink castle. But circumstance blew the door open; my mother died and my family
fell apart when I was seventeen. It was a bitter and terrible freedom.
In the silence, I finally began to hear my body speaking. Since Id never ex-
pected to lose my virginity, I hadnt really thought about who was or was not a
suitable object of desire. I was a cocoon of a girl whose naivet emerged as bi-
sexuality. I rather doubt thats what Mother had in mind.
In the 1970s bisexuality had glamour and mystery. It was a way of claiming
my difference that did not have the stigma of disability. I was surrounded by
art school kids who were trying to invent themselves just as frantically as I was.
The central project of my reinvention was an absolute denial of my disability.
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Its amazing what I was able to deny. If something was too obvious I treated it as
some kind of punk rock quirk. When I talk to people from back then they all say
they didnt know what the hell was going on with me. Art and queerness both
gave me space without shameat least inside of art school. There was no dis-
abled community to offer another perspective. The other glorious aspect of being
bi was that I felt liberated from the unattainable standards of the female body. I
was not meant to interlock with a single gender but could be part of a misty con-
tinuum. The word queer capturesbetter than any other termthe way I feel
about my body.
The day that my first college boyfriend asked me out, I literally thought he
was talking to someone behind me. I spun around to see what she would say. I
was baffled when there was no one there. Poor guy, he never quite knew what
to make of me. I hid from him even while we were tangled up together. I was so
damn grateful when he finally ended my terrified virginity, as I had no idea how
to let it happen. Not the how of it, but how to let it go. During all the years that we
were together, both of our families tried to break us up. His felt I wasnt enough
of a woman for him. Mine thought he was just being nice and that I should set
him free. Alas, I didnt disagree.
I didnt begin school aware of being bi. Even though I was happy with The
Boyfriend, in my second year I also fell in love with my best female friend. My
first reaction was, Jeez, dont I have enough problems? When we actually be-
came lovers that all changed. I was more disoriented by my lack of guilt.
I explored various kinds of erotica in my new status as two kinds of nonvirgin.
When I stumbled over images of disabled women, they were often very upset-
ting. In straight pornography they were simply fetish objects. While that doesnt
sound any different from porn per se, these women did not seem to be connected
at all to their own eroticism, but were acting out a desperate bid for any sexual
recognition. They were offered up as something extra queasy and taboo. In les-
bian porn I did find stories and pictures of disabled woman expressing their own
desires. Unfortunately, those stories were less than hot, as they were as interested
in making a feminist theory point as in making a girl horny. It would be years
before I believed that someone could truly love the imperfect, not just jerk off to
it. Or close their eyes and imagine some other body pressed close in bed.
I wonder how many disabled people find their sexuality through a covert,
nameless, grand experiment in undefined love. Disability can act as a radical
alchemists laboratory of relationship possibility. A place where love might be in-
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vented beyond the roles of gender, and leave behind inherited, failed mimicries
of intimacy.
two PeoPle walking down Clark Street
A Friday night early in the story of us: two wary, giddy people walking down
Clark on their way to dinner. Its hard to walk down the street with you. Being
together fractures my vision into pieces like an insects compound eye. I am
utterly magnetized by the sight of you; I cant stop wondering what you see in
me; Im watching us being watched; Im hovering above us; Im completely out
of my body. I am ashamed, too, because you quickly see that being my compan-
ion means becoming one-half of a two-headed freak in a sideshow. On the other
hand, most of those people staring at us dont think were a couple. They think
youre my attendant, my brother, my sister, or my savior.
Sometimes you check with me about the reactions you see on the street.
Sometimes you try not to show what youve seen.
I asked: What did you see the first time we met?
You said: I thought you were very serious.
four roomS: a travelogue
This time were going to your house.

The minute you invite me in, its as if my skin erupts with cats whiskers, all of
them quivering and investigating for danger. This place suits your needs, which
are so different from mine. I feel like Ive parachuted in with just a knife and a
Hershey bar.
The place I live is so built to my idiosyncrasies that it virtually wraps itself
around my body. Home lets me forget myself. Everything fits my scale and my
senses. The furniture is smallish and low to the ground. The light comes from
half a dozen ornate chandeliers, which are oddly practical since they hang low
enough that I can change my own light bulbs. There are no rugs, carpets, or any
other snares for the unwary on my floor.
On the other hand, your house is a challenge from the get-go. First we have
to climb three flights of stairs anchored by very shaky banisters. By the top Im
lurching off balance. So I enter unprepared for the wall-to-wall shag carpet-
ing that grabs my ankles and nearly throws me across the room. I seem to have
entered an episode of When Apartments Attack.
246 Riva Lehrer

I wobble through the living room trying to keep a tight rein on my limping.
And I say, here, Ill help you get the drinks. But Whoops, no, the wine glasses are
in cabinets somewhere up near the ceiling. And oh, no, please dont ask me to
open the Chardonnay. Thats not a crip thing. Im just plain old bad with cork-
screws.
The only place to sit in the kitchen is on backless leatherette barstools. These
do unfortunate things to my posture while dangling my feet several inches above
the floor. I feel about as sexy as a dachshundbut, alas, nowhere near as cute.
Not sure if this is turning out to be romantic comedy or farce.
One frazzled hour of cooking later, and we finally settle down at the dinner
table. Were not doing tasks. Just talking. Meanwhile our hands move the dishes
and silverware around in silent patterns of approach and withdrawal. Eating din-
ner has taken on as much coded meaning as a geishas painted fan.
We take our coffee cups into the living room where its time for a new round
of Close Encounters of the Furniture Kind. This room is dominated by an enor-
mous velour couch. It poses the immediate question of where to sit. All the way
at one end? In the middle, hoping youll head that way yourself? I try to arrange
myself in an elegant position and avoid being consumed by the cushioning.
Ive been expecting you to flinch at all my flailing around. I suddenly realize
that youve been very calm all night. Incredible. For whole moments I forgot to
be awkward. True, I am still trying to make shapes with my body that pass for
normal. But youre radiating something that is imploding my fears. The cushions
dip as you do sit down close to me. My eyes rise up and travel the length of you.
I find myself imagining how the pieces of us might find a way to fit together.
All through this evening Im wondering what will happen ifwhenI cant
hide my oddity from the truth of your hands. Every inch that we move closer
goes off like sirens in my head. They nearly drown out your words, which I need
to hear so badly, since we have not touched yet and I still dont know if we ever
will. The space between us waxes and wanes. All night Ive been telling you the
scariest things about me and waiting for you to run. Now Im letting myself hope
I wont see an echo of those stories in your eyes.
Desire plants me inescapably in my body. The shields are falling against
mutual lust. The truth under my clothes is whispering loudly, urgently, asking
how will I explain myself to you. I am most comfortable with the language of
medical records. With convoluted, opaque terms that let me speak as if I were
on display in the next room. Terms meant for an examining table, not a bed.
You see, my family was right, after all: to have warned me about desire when I

was a child. Because Ive been destroyed in other bedrooms, just the way they
foretold. Im trying not to remember the lover who said I was beautiful from the
waist up, but too deformed from the waist down. Or the lover who said my dis-
ability was never a problem, until it suddenly became the reason for our breakup.
Or the lover whose parents said that their child shouldnt be taking care of a
cripple. Or all the lovers that no one ever believed were really my lovers.
You pull me up toward the farthest doorway. I can see a smoothly made up
double bed with a gray cat asleep on its cover. She sees us and leaps for the floor.
Beds are complicated places. Pain and illness, sanctuary and isolation all re-
side in bed. Pleasure these days is mainly a distant promise. During nights alone
in the darkness, Ive wrestled my sheets into chains. I think that touching you
could break the Mbius strip that binds me only to myself.
Or, if I lie down with you, you could cut me into pieces better than any sur-
geon. Im already divided into parts. Dissected by other lovers words, hands, and
eyes into acceptably erotic portions or into no ones land. When we lie down I
will beg you to ignore whole parts of me. I will promise to hide them. I will hope
you can forgive them. Ill ask you to show me which fragments I can keep, and
what I must disown. I will wonder how much of me will get to stay this time.
I can feel your breath on my face. You are dreadfully perfect. Somewhere,
dimly, I know that your nose is a bit too . . . and your teeth are just a little . . . but
those are thoughts from another galaxy.
Is it possible that I look like this to you, also clad in a molten glaze of beauty?
You pull me up, and into the center of your home. Into the dark. A door sways
lightly closed. Even as we fall into your bed, I am prepared to be tossed back into
the sea of strangers.
tHe SHeetS
Your hands are on, are in, are under my clothing.

A Panic Inventory: There. Is. Not. One. Inch. Of. Me. That. Is. Normal. I have
a painters honesty: knowing that not skin, not hair, not eyes, or mouth or bone
or joints or muscle or fingers or fingernails are untouched by strange variations.
Monster on the outside, and monster on the inside where the bone, the muffled
thump, and the secret details live.
I feel your hands finding me. Running down my swerve of unruly spine. My
spine is a parade of vertebrae in all four dimensions. Your palms grip the vault-
ing barrel of my ribcage. My terrible ribs that make clothing grapple on me like
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249
cats clawing a boulder. But now that clothing falls. Your fingerprints snag on my
pale hidden skin, startled at the basket weave of scar tissue. Your hands trace the
palimpsest of forty-three surgeons signatures and the imprint of three hundred
hospital bracelets.
Without the scars there is no me; with them, I am in a negotiation with your
hands.
The places I want to be touched are shoved up hard against the forbidden
wastelands. Not a fingers breadth apart. There are Klaxons of trespass in my
voice. Im afraid that being with me is like fucking a butchers chart.
But
Its been so long that I forgot. Skin is not a shell; it reverberates in me like ring-
ing a bell. My skin sings in one dense chorus. In loneliness it had been broken
into soloists. Now my fingers speak to your skin. My tongue says other, more pri-
mal things, and everything it says is wet. Your blood-colored places are as fluent
as mine, as ready for the choir. You make me remember that skin deep is deep
indeed.
Its enough for once, that all of the secrets I have to offer arent grim. My body
surprises us both with its ability to be joyous.
And you said: You laugh with your whole face.
emPty bed
You unmade the bed; now no one lies in it.

You were my first disabled lover. Not my first lover: Id had partners for
twenty-five years before I met you. Yet somehow you were the one to end my
virginity, over and over again.
Sometimes when we were out on the street together you let your disability
show. That made me so happy. It freed me, too; we werent running from anyones
scrutiny. Its horrible to admit that I was indebted for your accident. Breathtaking
selfishness, I know, but through it you understood my own somatic craziness.
We met at just the right time after your injury. If it had been too soon after the
trauma, you would still have been trapped by shock. A bit later and someone else
would have helped reconcile you to your remade body. We even met at our first
disability conference. Both of us in a state of flux that led to erotic experiment.
My crip lover, in both senses, you are the first one who ever got me to com-
pletely take off my clothes.
So this is my thanks to you, for that gift, the union of our full-length skins.
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251
When we were naked together, I stopped being the Bride of Frankenstein. I
stopped being a living-dead collection of stitched together body parts. I stopped
being a creature whose only home was the doctors theater.
You made me your Golem, instead. If you wonder, is that better, let me say,
Yes. Shaped and reshaped by your hands, formed as a being of breathing clay.
You carved the truth on my forehead and animated it with the imprint of your
lips on mine.
And reconsecrated me every night in bed.
The Golem of Prague was made through love, magic, and daring, and so were
we. I am trying not to fall into dust now that you are gone.
I miss your scars and your patience with mine. But I walk a little less defended
in the world.
Because of what you said, with your fingers: I have assembled you in the night.
Felt the edges of the puzzle pieces, the keloid map, and the flinching, sleeping
bones. I know what you look like, and I know what we look like together. Watch
my eyes, so we can both be visible. In total darkness. With the lights on.
tHe Street
This morning I swung open the black gate onto Balmoral. Stepped out onto the
sidewalk behind two slender blondes. Per usual, I felt like a troglodyte lurking
behind their thoughtless, easy gait. But then for a moment, I remembered your
lips against my forehead. The scar where you kissed me burned, and I thought:
feel sad for them. These two will pass and leave no startled mark on the eye. Per-
haps, after all, it is a melancholy thing to be forgettable. Whatever else I may be,
I am a memory walking into view. I am a new shape on the street.
PRAyeR oF the GoleM

Protrude is to walk in all directions at once
is muscle stronger than bone
is tendon rigid as cables
that raise the circus tent
is limbs that turn back to the body halfway
to reach for you sideways
is eyes that cant be caught

is ears that keep secrets
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253
is silence in the wiring
is shoes built for mutants
is tongue writhing like an eel in the mouth.
when the mouth mumbles love.
protrude is falling down everywhere

everywhere. anytime.
protrude is my shoulders at your waist

my waist too low and thick to cradle
my cradle in the riverbank
my breasts, mysterious, hidden in reeds.
my feet tangled with your legs,
legs tangled with furniture,
bucked down to the ground
by a crouching pebble.
protrude in the expanding wingspan of crutches

protrude in the flying shul of a wheelchair
protrude is emet carved on my forehead,
a scrawl that holds both truth and death.
protrude is desire thrusting from darkness

protrude is clay that runs wet as blood.
Wet as the coming of the Bride

at last, in joy,
stripped bare.
the belFRy
Your friends dont like that you call yourself monster
Monster
But they too, just as you, pull me in, pull me over
On top of their sheepish skins.
Watch me shiver the silver from the back of the mirror
Weave it into my sky-black fur.
I am the one who crashes through walls

I am the one who flies out of windows
I bring the bed with me
254 Riva Lehrer

On top of my crooked back.
I give your words fangs

I give your touch claws
To hold, to hold in, to hold on.
Hold him. Hold her. Let go. Come.
We will only move forward

Our dance clears the room
Shadow crossing the moon
Without me, love would be
a
small
pink
candy
heart.

12
lezlie FRYe
fingered
Youre a freak.
It started out sly and emboldened and triple-dog-daring style, dripping with
eight-year-old arrogance in the bulk bin aisles of the Pc Market on Franklin
Avenue.
Your hand is so freaky, you are a freak! It got louder and more urgent as the
investigation continued, less controlled, less confident, more desperate to con-
vince me and more fearful that the project would not be carried out. Its interest-
ing how a young child can so effectively enact repression on an adult person twice
his size with about 207 more college credits focused on the topics of privilege and
oppression and big plans to change the world, and this powerit fascinated me.
Well whataya mean, freak? I ask him. Whats that mean, huh?
You know, its just weird-like, just creepy-like.
Like bad or like different? I query in the most neutral voice I can conjure
up for someone who isnt entirely responsible for the epithets he spews. About
eighteen likes get lobbed between us in a matter of four minutes.
And then he starts pulling this capital P Progressive bullshit I know is
hangin out in his mommas back pocket, whos standing behind us with her eye-
balls bugging out, scooping already stale, dried apricots nervously into a plastic
bag that wont open quick enough to make it look the slightest bit natural. Cause
after I say I dunno if thats so nice to call someone a freak. How do you think
you might feel if someone called you that? he starts this backpedaling business
of, Well, I dont mean it in a bad way, its just freaky thats all, and I know very
well this kids been called a freak before, and I know very well how good it feels
to him to identify someone else even freakier than him. I could sense it from the
onset of our interaction. I am his discovery, like a lost action figure caked in
dirt or a cracked blue robins egg or a clover with exactly four leaves, only I am a
real live human being ripe for the finding and right in the middle of an everyday
trip to the grocery store. And Im a better find too, cause seeing me changes the
way he can look at himself; with the titillation of realizing with his pin-the-tail-
on-the-new-freak find, he is momentarily off the hook. I am a tool for him to
shape himself against, because if I define the borders of freakdom, he can easily
slide under the normal wire. So there is a sigh of relief in his attack, a calm and
easy sense of himself that indicates he has instantly absorbed this new visual in-
formation offering him an automatic improved status in the hierarchy of weird-
ness. I am a temporary and irresistible get-out-of-jail-free card.
I mean, you cant do anything, he informs me bluntly.
And I appreciate this. The way I often appreciate children who lack the skills
or desire to censor themselves in such a way that might make them appear par-
ticularly likable. And theres a kind of caustic satisfaction when somebody says
something nobody ever says but everyone always means. His words are shiny
raw meat on a piece of dry white butcher paper and theyre bleeding all over us
both. Sure I can, I tell him calmly, but he is not convinced.
I betcha cant eat with that hand, he conjectures. You cant hold onto a
fork.
Well, maybe not. I tell him, I prefer to use this one, and I can eat a lot, ok.
I bet you cant play ball, he spits at me with a glimmer of vindictiveness that
unsettles my patient and generous posture. So I try not to look at mom whos
closing in on us to remind him how we talk about this at home, darling. Ya,
sure. Thats why Im being held hostage by the freak police in aisle seven, right
lady, cause yall talk about this aaaaaaall the time.
Ah haaah, I can, I spew back instead.
I bet you cant jump rope.
Oh yes, I can. Suddenly I am nine years old, and Im in the playground
behind St. Clements parish on Orchard Street in Chicago, playing a fierce and
Fingered 257
spitefully educational game of foursquare and beating Jason Wheeling at arm
wrestling because crutches make your muscles real big and Im a Feminist arm-
wrestler too, Lezzie the leeeeeez-bee-anne, in fact.
But you cant hold things with it.
Against my better judgment I am illustrating my incredulous capabilities to
precariously balance a wine bottle, two cans of over-priced black beans, and a bag
full of peanut butter pretzels. And after a second I realize I have just made myself
into a goddamn circus seal and everything I just read about the historical signifi-
cance of freak shows is flooding my limbs and discourse: acting on the body is
blinking on and off in fluorescent orange light across my forehead, leaving the
hot buzz of embarrassment itching inside my ears.
Betcha cant ride a bike, he says.
Sucker. Oh yes, I can. And fast and hard and up big hills too, I add. I can
outride you any day, kid. Kid is not something I usually call children, but this
guy is grating on me, so I go for the low blow and ride on our substantial age
difference until I can collect myself and offer a remotely more mature counter-
argument.
Betcha cant throw this. He grimaces with a fat orange in his hand.
How do you know? My mean second-grade self is rearing out, rolling up
her sleeves, and coming in for the bitch serve that will knock me right into the
Queen box, where I intend on staying for the rest of recess. This is considered
poor sportsmanship when used against a novice and can result in the other
players ganging up against the server, but I am becoming agitated and grasping,
grasping to get a hold on the trajectory of our meeting.
Betcha you cant write homework with that hand.
Hes got me there and then suddenly for every bad reason I am saying So
what! and the words puncture every possibility in my mind that we are going
somewhere with this line of accusations. And anyways, I tell him I write better
with this hand . . . what hand do you write with, huh? And he says his right hand
too, and when I point out that this is similar about us, he bristles. He can write
with any hand he wants, it seems.
I dare you, I say. I just dare you to think of any one thing I gotta do that I
cant. His brain is turning, turning but before he can come up with something,
Im tying up my bag of pepitas, writing in black crayon the number 7402 with
my ooooooonly writing hand, and goading him further, Betcha I can kick yer
butt at any video game too.
He protests loudly between whiny requests for raisins, also stale, like every-
258 Lezlie Frye

thing else in the bulk bins at this store, but I can tell hes unsteadied by my ap-
propriation of his betcha weapon.
And I betcha I can tie my shoe faster than you can find the chocolate malt
balls, I say, further escalating the absurdity of this conversation.
And then, in an entirely unmeditated gesture toward my own unexpected
mini strategic essentialist grocery shopping project, I suddenly hear myself say-
ing, Theres a lot of things I can do that you cant, you know.
With that hand, he smirks.
With this hand, yes.
And then the dreaded, inevitable, and unintentionally invited nasty edges of
disbelief surface in his words: like whAt?
Well . . . I say, cloaked in a pause that is all plastic security.
Think, think!!! Of everything I couldnt imagine in the last twenty-six years,
rightnow. This is, after all, as good a time as any for a critical epiphany between
the dried pears and sesame sticks.
Id been moving through the better part of the last two months in a foggy
panic that seeped into every spare moment trying to figure out just exactly what
was so great about disability and ability, and this fucking kid was illustrating the
whole dilemma of coming out. Coming out to the store at 9 p.m. and not hiding
my hand in the left-hand pocket of my hoodie. To be visible, its tiresome. All I
wanted was some pepitas and pretzels, damn it.
huh!? Like what?! Pressing, pushing theres suspicion and triumph in his
voice. I feel sniffed and found out and I am sweating and hes swinging a long
clear sack of raisins back and forth and balancing on one foot, expectant and
ready to pounce. This boy, freak making, smells me and encroaches, eyes spar-
kling and dirty laces dragging underfoot.
I feel the weight of weeks of rummaging around in myself, What is good
about my body, about my difference? Doing a strategic inventory of coming
out as queer, showing up to accept my prepackaged, preappropriated identity
with all this history and community and culture and logos and prancing around
at PRide upon permanent graduation from the depths of heterosexual despair.
Juxtaposed with the first time I use the word disability and my family tells me,
Youre not disabled. Youre perfectly capable. Youre normal, just like me, my
sister insists. Thats a bad word, see, and Im not bad. But I keep trying to claim
it through the prickly protest and awkward explanations and the more I iden-
tify with people like me, the more I wonder, Wheres the party? There must
be something about my hands that I can hold onto, that can help me through
Fingered 259
these ugly moments with eight-year-olds and twenty-four-year-olds and fifty-
two-year-olds, I think. Theres gotta be something about my body that can help
me out of this.
Frantically I am scanning the surroundings: identifying exits, registering the
contents of plastic bins, searching the carts of passersby for some tool, a route of
escape. The elevator music tempo rises and sweat is accumulating every place.
I survey the produce desperately, pausing over gnarly ginger roots and carrots
that mirror the unruly direction and growth of my limbs, seeking the sexy chaos
of organic fruits, the escapees of genetic testing and modification, dirty and un-
symmetrical in the shadow of their absence belied by the shiny, perfect symme-
try of tens of waxy, odorless apples stacked upon each other. These errors in the
(re)produce regime are spoiled only by the aberrant viewer and put to the most
incredible and productive use by more adept reception; I remember, then, the
first time I discovered this, sitting on the side of the road with a broken down
Geo Prism, bored to the point of obscenity. Having untangled the stem of a
Granny Smith I realized that the tip of my hand, with its knotty pointed corner
and angled curve, fit perfectly into the nook at its top. When I applied pressure I
noticed the stretching, slow at first and then with a sound, not violent but a sort
of spreading sound, not the clean cutting of a well-sharpened knife but a less
precise separation, dripping and marked by fingerprints my hands leave behind.
All of a sudden I am very calm and Im looking the boy who is not the freak
right in the eyes and again I hear myself talking, saying, like, I can fit my hand
into very small spaces, and his mother glances over at me and her mouth has
dropped open a little and the word hush is hanging out below her bottom lip.
But this garners a certain fascination from the boy and so he skips a beat and
smiles at me sideways, the sticky plastic bag hanging limply from his fingers.
Theyre gaping, these two with their excess extremities, and now I want them
to notice, to see me; I demand it of them the way I have of so many lovers, to
look at my body in its startling familiarity. I let them memorize the way my arm
wraps around itself, twists into my wrist, bends in two directions at the elbow.
I will them to imagine all the places my hand has been, between which cracks
suiting just its shape, into which crevices only it can fit, the openings it meets
and how deeply it may slip unhindered by the endless redundancy of knuckles
and joints and fingernails crowding and poking in every which direction. On the
edge of my limb leak suggestions: where it frequents my body, how it visits bodies
like theirs; invitations offered up by each crease, fold, sphincter, each contracting
muscle, each liminal space between. I let my hand hang, taut and heavy before
260 Lezlie Frye

their gaze, erect, bent, unpredictable. I move slightly by way of directing them.
This fantasy, of locating their focal point, mapping the frame, timing the impact,
tightens up to the extent that I exist only inside the crack in this moment.
I am not choosing this, I remind myself. This is not mine, this contact. It does
not belong to me even as it makes each of us, the boy, his mother, me. But in it
is a thin slit of space fitted for the knotty end of my limb. Curving methodically
along its edges, I push up against it, applying pressure, flirting with the dangerous
possibility of being submerged completely, slowly, then faster, disappearing and
reappearing as a repetitive dialectic motion into which I breathe. Here, against
the fleshy insides of this painful confrontation unfolds the world-making power
of seeing myself another way. Flanked by the confines of this repressive accusa-
tion that I am something less than whole or human, I begin to find a way in.
It can come in handy sometimes, I brag shamelessly to the boy and his
mother. My hands were born to be inside these cracks, I remind myself. They
were born to roam beyond the rims of them. My hands were born to be inside of
cunts, to reach in, bring babies forth; Ive always known this. A small and wind-
ing, dexterous hand, smooth with no nails protruding. Not sharp, but worn like
driftwood or clear glass rubbed on coarse sand. Another knotty, sturdier one,
stubby like a carpenters hand, like my father Richards. Working hands. Wel-
coming hands. Walls of vagina-hugging, tight-slipping, lining-gripping hands,
like my four fingers sighing on the way through anothers five. My hands dont
lie. My hands.
I ask this boy where hes heard the word freak. School . . . everywhere,
he retorts. He wont say its been hurled at him before but I know. He is tiring
of my questions and has resigned himself to staring. And then I learn that his
momma has already taught him to appropriate the feminist rhetoric of safety in
lieu of teaching him about human difference, because he says, this conversation
is making me uncomfortable. Im done talking about this, all attitude and blame.
But instead of telling him that Im the one that gets to say that and how his
raggedy little blue corduroy ass will stand here and wait until Im good and ready
to call it quits, I kneel down and look into his eyes with my hand raised between
us and say, Well thats ok, because this is a very small town; I know well see
each other again soon and we can finish this conversation then. I wonder who
will be more punished by this always-incomplete project to which I have none-
theless promised to return.
Course I dont wanna look at his sorry face any time soon, seeing as how it
is not legitimately the responsibility of the object to give the object lesson,
Fingered 261
and since I have no desire to negotiate his mothers reaction to what has been
perceived as an indictment of her parenting, which it in fact is. Though Im not
sure she understands this cause as I turn to leave, she leans toward me. And as
if it were my choice to postpone a perfectly ordinary activity like eating to jus-
tify my presence in a public space, as if I in fact had consented to absorb the
burdensome task of educating eight-year-olds by way of corporeal display, and
as though I had seamlessly anticipated the absent lesson plan showcasing the
multicultural inclusion of the cripple, she silently mouths the highly exaggerated
words, Thank you.
262 Lezlie Frye

13
Rachael GRoneR
Sex aS SPoCk
autism, sexuality, and autobiographical narrative
In recent years, the media has been inundated with narratives about autism, in-
cluding best-selling autobiographies, films with prominent autistic characters,
and even scholarly work that belatedly confers diagnoses of autism on artists
such as Michelangelo and characters such as Melvilles scrivener, Bartleby. The
popularity of these narratives parallels an increase in attention to autism over
the past twenty years in the medical and educational communities as well as in
the popular imagination.
Despite the wide-ranging attention to autism, also known as autism spectrum
disorder (ASd), there has been very little attention to sexuality among people
with ASd. And when sexuality is represented, it is usually depicted as abnormal.
Even a casual survey of clinical, medical, and education literature reveals that
sexual behaviors are to be discouraged or managed among autistic people,
especially those who live in group homes or institutional settings. The language
of these and other texts, popular and scholarly, assumes that all people with
ASd, no matter how high functioning on the autistic spectrum, are or should
be asexual, presumably because their sexuality is inappropriate and potentially
harmful to others. For example, myriad articles discuss how to keep a person
with ASd from engaging in public masturbation or inappropriately touching an-
other person. These texts, which tend to be written in a condescending manner,
perpetuate the false assumption that autistic people should refrain from sexual
behaviors altogether. The European Charter for Persons with Autism, adopted
by the European Parliament in 1996, also illustrates this lingering assumption
about autistic asexuality. The charter reads: Many people with autism, particu-
larly those who are more severely afflicted, show little interest in sexual relation-
ships and will consequently show little interest in such activities (European).
Wendy Lawson, a prolific writer and an autistic woman herself, recently at-
tended an academic conference on autism at which a well-known speaker said
that [s]exuality is not a problem for individuals with ASd. They dont seem aware
of their sexuality. If sexuality does present a difficulty then the best thing to do
is to redirect the individual . . . keep them busy. Lawson was furious. Actually,
I am a sexual person too, I wanted to say. I have the right to be a sexual person,
just like you do (Sex 2728). She reports that many of the other conference at-
tendees privately disagreed with the speaker, but the public and dominant story
was and still is that asexuality is and should be the norm for people with ASd.
In this chapter, I examine representations of sexuality within autobiographi-
cal narratives of people with ASd. I am particularly interested in how people with
ASd construct and describe sexuality, despite being labeled asexual by family,
friends, and doctors. My title, Sex as Spock, refers to one of the metaphors
most often used by these authors to explain their autism, that of half-human and
half-Vulcan Mr. Spock from Star Trek. More recent variations of the original Star
Trek series have featured similar human-hybrid characters, such as the android
Data and a half-cyborg named Seven of Nine; like Spock, they are relentlessly
logical beings who do not recognize or feel human emotion and rely instead on
facts and figures to negotiate social relationships. For this reason, many autistic
writers compare themselves to these characters. As the autistic author and ani-
mal scientist Temple Grandin explains, I need to rely on pure logic, like an ex-
pert computer program, to guide my behavior. . . . I cant read subtle emotional
cues. I have had to learn by trial and error what certain gestures and facial expres-
sions mean (Thinking 135). Like the android character Data, who experiences
significant confusion about sexual and romantic relationships, Grandin feels that
she cannot express her sexuality in conventional relationships because, she says,
they are too difficult for [her] to handle (133). As I will argue, Grandin and other
people with ASd may choose relationships and sexual expressions that are un-
conventional, but they are definitely not asexual; in fact, the personal narratives
264 Rachael Groner

written by and about autistic people form a complex challenge to heteronorma-
tivity and to mainstream cultural assumptions about sex and disability.1 Much as
an autistic person is often illegible to the non-ASd, or neurotypical (often abbre-
viated as nt) world, autistic sexuality is illegible to heteronormativity. In a sense,
autistic sexuality is always and necessarily queer, even if the people involved are
not gay, lesbian, bisexual, or transgender in identity or practice. Judith Halber-
stam wrote in the early 1990s that [t]here are no transsexuals. We are all trans-
sexuals (F2M 225). I take this to mean, in part, that the term transsexual is
simultaneously useful and useless, a postmodern cipher. I will extend this for-
mulation to claim that all people with ASd are queer and, simultaneously, that
there are no people with ASd who are queer.
In making this claim, I am also following Robert McRuer, who writes that
there is a crisis around heterosexual and nondisabled people that manifests itself
in complex processes of conflation and stereotype: people with disabilities are
often understood as somehow queer (as paradoxical stereotypes of the asexual or
oversexual person with disabilities would suggest), while queers are often under-
stood as somehow disabled (as an ongoing medicalization of identity, similar
to what people with disabilities more generally encounter, would suggest) (As
Good 94). For McRuer, the goal is not to simply notice the parallels between
representations of disabled and queer bodies, but to do something with those
parallels, for [n]either gender trouble nor ability trouble is sufficient in and
of itself to unravel compulsory heterosexuality or compulsory able-bodiedness
(95). He says, and I agree fully, that we need to actively perpetuate the crisis; if
compulsory heterosexuality and compulsory able-bodiedness are always already
failing systems, as Judith Butler, McRuer, and numerous other queer theorists
suggest, we need to push at those moments of failure and suggest multiple alter-
natives. In this chapter, I wish to perpetuate the crisis and to complicate it fur-
ther by emphasizing not just able-bodiedness, for autism is not located solely (or
even primarily) as a physical disability. Perhaps a key aspect of a critically queer
methodology is to push at the distinctions of the mind and body split in dis-
ability studies at the same time that we push for the destruction of able-bodied
privilege.2
Before turning to specific autobiographical narratives, let me introduce some
of the key terms that will appear throughout my discussion. First, I will use the
terms autistic people and people with ASd interchangeably to describe people
along the autism spectrum. There is controversy over which term is most ap-
propriate; rather than becoming mired in that controversy, I will alternate be-
Sex as Spock 265

tween the two terms used most often by people with ASd. I use the term nt to
refer to neurotypical or nonautistic people or cultures, though some argue that
this term implies that there are two neurological categories, typical and atypical.
Some scholars of autism even insist that we should order the neurological spec-
trum according to diverse abilities and not social norms. For example, Simon
Baron-Cohen writes that people with [ASd] might not necessarily be disabled
in an environment in which an exact mind, attracted to detecting small details,
is an advantage. In the social world there is no great benefit to such a precise eye
for detail, but in the world of math, computing, cataloguing, music, linguistics,
craft, engineering or science, such an eye for detail can lead to success rather than
disability (Is Aspergers par. 1 of summary).
Because media representations of ASd are limited and stereotypical, I wish
to describe the autism spectrum for readers who are unfamiliar with it. In gen-
eral, medical and psychological literature on autism describes it as a disorder
that manifests itself as a range of cognitive, sensory, and social behaviors that
are usually considered atypical by people in the nt world and the medical com-
munity. For example, some people with ASd are described as having unusually
heightened or diminished reactions to sensory stimuli (touch, sound, smell, etc.).
Another oft-described characteristic is the development of obsessive physical
fixations, or tics, and the pursuit of seemingly irrational repetitive activities.
Some autistic people seem to have what are called photographic memories and
can absorb large amounts of information more quickly than nt people; others
are cognitively impaired, especially in the area of verbal skills. Most autistic
people report difficulty communicating with others, and it seems that this occurs
because they tend not to conform to unspoken nt rules of communication. For
example, people with ASd tend not to look other people in the eye; they say that
they cannot read others facial expressions or understand emotions as concepts
or experiences; and they are considered by many in the medical community to
be uninterested in other people, sometimes being described as treating others
as inanimate objects. The autism spectrum is wide-ranging and includes those
who are considered to be severely debilitated and require full-time care, as well
as those who achieve high levels of intellectual and social success (the latter are
often labeled by their peers as merely eccentric rather than disabled). Most autis-
tic people report difficulty creating and maintaining interpersonal relationships
with acquaintances, friends, lovers, or family members. There is generally no
physical limitation or disability that prevents people with ASd from participating
in sexual activity, though some individuals with heightened or diminished sen-
266 Rachael Groner

sory abilities have to adjust normative sexual activities for their bodies, a process
that nt people engage in also, albeit in less conscious ways.
The demographics of people with ASd are difficult to ascertain, largely be-
cause autism is occasionally misdiagnosed or, more commonly, goes undiag-
nosed, especially on the high-functioning end of the spectrum, also known
as Aspergers syndrome. In addition, because of the attention autism has gar-
nered, the numbers seem to grow each year, so any demographic information is
necessarily incomplete. According to Victoria McGeer, 75 percent of diagnosed
autistic people are mentally handicapped in a general way [and] the remain-
ing twenty-five percentoften identified as having Aspergers syndromeshow
average to good cognitive functioning as measured in standard intelligence quo-
tient tests. But even those with Aspergers syndrome display these characteristic
abnormalities to some degree (235). McGeers pathologizing language, it should
be noted, is typical of the descriptions of people with ASd in popular, medical,
and scholarly literature.
The relationship between autism and gender is fairly unclear at this time, but
medical literature reports that the ratio of men with autism to women with aut-
ism is estimated at 3:1. It has also been reported that many of autisms mani-
festations . . . echo types of behavior with which we are all familiar in a certain
type of normal male (qtd. in S. Smith 245). When it comes to sexual iden-
tity, Donna Williams, a writer with ASd, has posited that the autism spectrum
contains a higher percentage of gay, lesbian, bisexual, queer, and transgendered
people than the nt community. Dawn Prince-Hughes, the author of an auto-
biography about autism, agrees; she argues that most autistic people do not
see gender as an external or internal category that is important or even appli-
cable, especially to themselves (Songs 59). When discussing her husband Danny,
Barbara Jacobs notes that he always had an affinity with transgression and that,
although heterosexual, he loved the feeling that he was in the company of those
who might be marginalized by the majority, just as he was (159).
Few people with ASd write autobiographies, and most of these are written by
women on the high-functioning end of the autism spectrum. Thus, I make no
claims that the texts I examine here represent the ASd population. Nor would
I claim that there are great similarities among this group of authors and texts,
for autism affects each of them in very different ways. In a discussion of auto-
biographical narratives, it is important to note that the very concept of autobio-
graphical narrative presents problems for autistic writers and readers, because
autistic people seem to conceive of themselves in a way that is very different from
Sex as Spock 267

nt writers and readers. Medical professionals seem to agree that an autistic per-
son does not conceive of herself or himself as a distinct, coherent, and knowable
self, though most readers assume that writers have some semblance of self when
they create a narrative. Further, most literary criticism about autobiographical
writing is founded in part on the assumption that even if the authenticity of the
narrative is questionable, the existence of an author is a given. Indeed, narratives
by people with ASd do tend to be significantly less organized, if you will, than
those of nt writers. In one of the first essays to focus on these autobiographies,
Sidonie Smith explains that people with ASd do not appear to get together an I
and a you through which to develop a concept of a narrative subject and a nar-
rative life (232). For example, Williams, in one of her autobiographical books,
describes her difficulty in seeing herself as a subject when she explains that at the
age of six, she wrote graffiti on a wall that said Donna is a nut. As she explains,
it took me four more years to realize that normal children refer to themselves as
I (Nobody 23). Although this quote does not indicate it, Williams consistently
challenges the concept of normal in her writing and her other work (as a blog-
ger, a singer-songwriter, and an educational consultant). But she recognizes that
language is one place where normal is hard to shake.
One of the challenges posed by a lack of a subjective sense of self (an I)
seems to be that it also precludes a sense of an other (a you); this is one of the
reasons that people with ASd may often seem unaware of other peoples exis-
tence. Jacobs, an nt woman married to a man with ASd, writes that a friend
with ASd told her, I was eighteen before I knew other people were real ! It blew
my mind (69). Researchers like Baron-Cohen and Uta Frith argue that the bio-
mechanics of an autistic persons brain prevent the development of an nt sub-
jectivity. Such scholarship has given rise to therapeutic models that attempt to
teach autistic people how to conceive of themselves as discrete, concrete, and
knowable. According to these models, autistic people, even if they are not able
to overcome their brain structures in full, may nonetheless be able to develop
an nt-like subjectivity. The stated goal of such therapy is to help autistic people
feel more comfortable and be more successful living in an nt world; nts, in turn,
might be more comfortable and successful interacting with autistic people who
are assimilated to nt conventions. Frith and Baron-Cohen are controversial, to
say the least. I find their therapeutic model to come dangerously close to advo-
cating a form of neurological and behavioral passing. Numerous scholars main-
tain that Frith and Baron-Cohen have drawn questionable conclusions about
ASd. For example, in 2004 the authors of a special issue of Philosophy, Psychiatry,
268 Rachael Groner

and Psychology, edited by Richard Gipps, disagreed vehemently with Frith and
Baron-Cohen, positing that autism does not demonstrate a lack of subjectivity
at all. Instead, they claim that autism produces alternative forms of subjectivity
for which the mainstream Cartesian theories of Frith and Baron-Cohen do not
account. Stuart Shanker, one of the issues featured authors, suggests that what
autism may really represent is not a window into the hidden mechanisms in-
volved in a theory of mind, but rather a window into the conceptual problems
involved in Cartesianism that lead one to postulate a theory of mind (220).
Shanker and his fellow authors are proposing something akin to the spectrum of
subjective experiences, wherein nts are not the standard against which all other
theories of mind are compared. Instead, the nt world is just one of many, and
the ASd world is equally complex and valuable. I am squarely in Shankers camp.
Frith and Baron-Cohen aside, there are people with ASd who have come up
with their own personal therapeutic models to help them cope with the chal-
lenges of confronting the normal world. Williams explains that she literally
wrote herself into existence in the nt world by teaching herself how to write in
a subjective narrative voice, even though this voice was utterly foreign. Anne
Fleche, echoing the title of Williamss memoir, Nobody Nowhere, usefully argues
that Williams enables us to read the way a body becomes a subject, [or how]
a nobody becomes a somebody (111). Further, Fleche writes, Williams shows
the contradictory ways in which it is possible to embody a self precisely by per-
forming autism; that is, by vocalizing the need to embody a self (118). In a
similar vein, Sidonie Smith concludes that autobiographical narratives by people
with ASd hint at a different subjectivity (244). For Smith, narratives by people
with ASd provide a valuable opportunity to intervene in the existing debates in
scholarship on autobiography about authenticity and claims to truth. She per-
suasively argues that memoirs by autistic people demonstrate the very limits of
autobiographical writing, scholarship about autobiographies, and perhaps nar-
rative itself.
Autobiographical narratives by people with ASd began to appear in the early
1990s. Most of the texts I analyze were published in the early 2000s, which is
when a boom occurred in such publishing. The narratives examined in this chap-
ter include: Temple Grandins Emergence: Labeled Autistic and Thinking in Pic-
tures and Other Reports from My Life with Autism; Wendy Lawsons Life Behind
Glass: A Personal Account of Autism Spectrum Disorder; Dawn Prince-Hughess
Songs of the Gorilla Nation: My Journey through Autism and an edited collection,
Aquamarine Blue 5: Personal Stories of College Students with Autism; Chris and
Sex as Spock 269

Gisela Slater-Walkers An Asperger Marriage; and Donna Williamss Nobody No-
where: The Extraordinary Biography of an Autistic, Somebody Somewhere: Break-
ing Free From the World of Autism, and Everyday Heaven: Journeys Beyond the
Stereotypes of Autism. Rather than discussing each narrative one by one, I explore
them thematically, so as to demonstrate relationships among them. My goal is
not to provide a comprehensive analysis of these texts, but rather to demonstrate
how narratives of people with ASd are resisting heteronormative prescriptions
and proscriptions and creating new, potentially queer, forms of sexuality and
relationships. Along the way, I also discuss several texts that are not autobiog-
raphies but that provide context and/or feature some ethnography and biogra-
phy. These include: Maxine Astons Aspergers in Love: Couple Relationships and
Family Affairs; Barbara Jacobss Loving Mr. Spock: Understanding an Aloof Lover;
and Wendy Lawsons Sex, Sexuality, and the Autism Spectrum.
Strange ritualS: Performing Heteronormativity
Dawn Prince-Hughes is one of many autistic women who compare themselves

to the popular half-cyborg and half-human Star Trek: Voyager character named
Seven of Nine. She writes that [l]ike Seven of Nine, I find that I am only part
human and very much something altogether different. . . . I dont understand the
strange rituals associated with attraction or why people are obsessed with certain
physical characteristics (Songs 85). In the next pages, I analyze Prince-Hughess
and other ASd writers encounters with the strange rituals of nt sexual life. I
argue that their narrations of these encounters might productively be read as
queer: not simply because some describe same-sex sexual interactions, but also
because, by highlighting the strangeness and unintelligibility of gendered and
sexual norms, these texts point to the fictiveness of nt heteronormativity. As I
will show, the notions of neurotypicality and heteronormativity are linked; much
of what renders ASd a disability in the sexual realm arises from a perceived fail-
ure to read and correctly perform heteronormative codes of sexual behavior
or, from an intractable awareness of the illogic and arbitrariness of these codes.
Prince-Hughes explains that in high school she had no overtly sexual feel-
ings for anyone, male or female, but I had to admit a desire to be near some
women because they made me feel good (Songs 54). Her lack of sexual interest
in boys during high school prompts fellow students to call her a faggot. Straight
boys and men are particularly threatening to her during this period. Prince-
Hughes is raped numerous times, after getting drunk or stoned at high school
270 Rachael Groner

parties as a means of coping with feeling so different and socially awkward. She
finds refuge within the gay and lesbian community, asking her parents to drive
her several hours to the nearest queer support group. During this time, Prince-
Hughes has no interest in a sexual relationship but believes sexuality runs on a
continuum; she even wonders if one could be lesbian in ones orientation to
the world but choose never to have sex (Songs 58). The support group provides
many benefits to Prince-Hughes as a teenager; the most important of these is in-
formation about sexuality, which feels to her like a foreign language.
In early adulthood, Prince-Hughes begins to have sexual and romantic rela-
tionships with women almost exclusively, but she still does not identify as a les-
bian. She works as an exotic dancer for several years in her twenties and describes
feeling confronted . . . by [her] expanding sexuality (Songs 78). Her female co-
workers express attraction to her and make sexual advances, but Prince-Hughes
finds that, even after years of exploration with the queer support group, she
still does not understand what is happening for her coworkers. In response, she
decides to approach sexuality as if it were a research project. To me, sex was
an exercise to be mastered. . . . [It was] intellectual in nature (Songs 86). She
watches pornographic films, reads sex manuals and erotic literature, and asks
her coworkers detailed questions, all of which she compiles in her head, so as to
at least act the part of a sexual being, even if she does not feel comfortable with
the many rules that govern sexual relationships. Eventually, she tries out her
knowledge to great success, easily starting sexual relationships with a number of
women and, as she describes it, achieving a high level of sexual satisfaction in
her partners.
But as she continues to learn and practice her new skills, it becomes clear to
her that even when she flawlessly applies the logic of sex and love, just as popu-
lar films might have scripted it, she fails. For example, it appears to her that
in popular culture and in the stories of her friends, women are after love, not
sex, and their ultimate goal is marriage or, in her case, a long-term relation-
ship. In relentlessly logical form, Prince-Hughes wakes up the first morning after
each sexual encounter planning to move in with her new partner and start a life
together, often to the surprise and dismay of the woman in whose bed she has
awoken. Over and over this occurs, for, Prince-Hughes says, she could not ad-
just her methodology after learning it so thoroughly and, she thought, so well.
Although she looks beyond heterosexual stories for inspiration, she finds that
the lesbian and bisexual world is not so different from its heterosexual cousin
and that human relationships are much more complex than a set of rules or skills
Sex as Spock 271

could explain. Prince-Hughes feels more mystified than ever and experiences
panic and rage attacks as a result of her repeated failures to create the ideal-
ized version of love and sexual compatibility. Sexual research projects such as
Prince-Hughes conducts appear often in autobiographies of people with ASd.
As is the case with many nt adolescents, some autistic people report retreat-
ing into isolation to avoid sexual (and other interpersonal) activity altogether;
others react in an opposite manner and report engaging in sex often and with
multiple partners. A good example of both extremes is Danny Jacobs, whose
story is told by his wife, Barbara, in her book Loving Mr. Spock: Understanding an
Aloof Lover. When Barbara first meets Danny, he is regularly having casual sexual
encounters with many different women because [s]ex, he said, was meaningless.
An act he rarely got anything from (29). He calls casual sex The Game, de-
scribing his encounters as robotic challenges that are not about sexual or social
pleasure but about the successful accomplishment of a task. After the couple mar-
ries, their sexual relationship vanishes, and Danny swings to the other end of the
sexual spectrum. Barbara writes: That [sex] means something to me was irrele-
vant to him. If I wanted him to go through the motions, he said he would, for my
sake, but I would have to initiate it, because, unless he was playing The Game, he
was completely sexually passive, a sexual object, and always had been (169). Like
Prince-
engagement as ifDanny
Hughes, they appeared in a playbook.
Jacobs studies Butthe
and masters as rules
was the case for
of sexual andPrince-
social
Hughes, the rules of the game are not adequate for his real-life relationship.
Prince-Hughess and Barbara and Danny Jacobss stories reveal the fault lines
in heteronormativity. Although both writers initially expect that their thorough
research will result in social and sexual literacy, it ultimately leads to frustration
and, eventually, to physical and emotional pain and stress. This occurs not be-
cause either fails in adequately performing feminine and masculine gender roles,
but rather because they perform these roles too well: in Prince-Hughess narra-
tive, the feminine valuation of love over sex; in Danny Jacobss story, the mas-
culine experience of sex as a game without emotional significance. By taking
gendered norms to their logical extremes, Prince-Hughes and Jacobs reveal the
absurdity of these norms and thus, as Butler might argue, threaten their undoing.
Gisela and Christopher Slater-Walkers book, An Asperger Marriage, focuses
squarely on heternormative assimilation and doesnt dwell on sexual failures
and exclusions. Yet it, too, undermines some of the foundations of heteronor-
mativity. The book describes their experiences as a mixed nt (Gisela) and ASd
(Chris) couple. Many of the challenges they face seem quite common among
272 Rachael Groner

nt and ASd couples alike: problems negotiating private space while living in the
same household, making financial decisions jointly or individually, and han-
dling interactions with extended family members and friends. When they go to
couples counseling to address these issues, the counselor tells them that Chriss
diagnosis of ASd must have been wrong; she is certain that people with ASd never
marry. The Slater-Walkers are slightly uncomfortable with the counselors ques-
tioning of Chriss diagnosis, but they seem to accept it and move on with the
counseling.
In a narrative that is detailed about the many challenges the couple faces,
sexuality is the one issue neither author is comfortable discussing. Gisela writes
that the only problem they have never had is with the physical side of our
marriage, although I understand that this is not always the case for people with
Asperger Syndrome (91). The single additional comment that they make about
sexuality, in a short jointly written chapter (most of their chapters are written
individually), is a similarly vague statement that although many couples, ASd or
otherwise, do not enjoy happy sex lives, fortunately, this part of our marriage is
very happy, and . . . we do not have the urge to make it public, so we are keeping
this chapter short and discreet (100).
The Slater-Walkers conform here to one of normative heterosexualitys most
important requirements: that sex be kept private and discreet. Paradoxically,
though, the compliance with this requirement risks rhetorically erasing the
happyand, readers seem meant to assume, normativesex to which their
text alludes. That is, if the imperative to keep sex private were to be taken to its
extreme (if, for example, the Slater-Walkers had taken their adherence to this
rule a step further and entirely omitted any mention of sex), sex would risk dis-
appearing into unrepresentability. As we have seen, the erasure of sexuality is
common in professional and medical accounts of people with ASd. The Slater-
Walkers discretion in regard to sex might therefore prompt the question: how far
removed are heteronormative ideals of privacy from the pervasive assumption
of asexuality that informs dominant cultural representations of autism?
breaking tHe glaSS wall: Creating aSd Sexuality
As we have seen, people with ASd are neither asexual nor asensual. Yet, certain
aspects of ASdin particular, an intolerance for being touched that some autistic
people experiencemake some conventional sexual acts unpleasant or undesir-
able and thus necessitate alternative modes of sexual and sensual expression.
Sex as Spock 273

Temple Grandin is an autistic writer who chooses to be celibate. Grandin
makes a conscious choice to avoid the sorts of games and rituals that Prince-
Hughes and Jacobs work so hard to understand. As a teenager, Grandin says, she
felt that when hormones hit, [her] life revolved around trying to avoid a fear-
inducing panic attack (Thinking 88). She and her parents notice early in life that
Grandin cannot stand being touched; even hugs from loved ones make her skin
crawl. This is a common experience among people with ASd; each autobiogra-
phy explains the difficulties in finding tolerable ways to touch and be touched by
others. Grandin researches the topic and discovers that other autistic people also
experience an unpleasant heightening of the senses; one woman describes rain as
sounding like gunfire, and a man says he can hear blood whooshing through
[his] veins (Thinking 72). As I have mentioned, many people with ASd avoid
looking directly at another persons eyes or face. Williams describes seeing colors
and shapes that nts insist do not exist, and she has great difficulty with fluores-
cent lights because they make her temporarily blind. Others report being drawn
to certain tastes or smells such as soft, bland foods or the smell of aluminum
pans. As in Prince-Hughess experience, panic attacks are frequent reactions to
sensory triggers; in order to avoid such attacks, many autistic people say that they
stay indoors to avoid new experiences and people. One of the issues repeated in
several autobiographies by people with ASd is that certain acts of affection, or of
a sexual nature, are off-limits, such as kissing or sharing a bed. Darius, one of the
authors in Aquamarine Blue 5, a collection of personal stories (edited by Prince-
Hughes) about the lives of college students with ASd, writes that he doesnt like
soft touches, and he refuses to kiss anyone, no matter how much affection he may
wish to express. Darius has sex with both men and women, but he explains that
he sets the physical terms of the encounter so that he can tolerate being so close
to another persons body and performing sexual acts he generally finds uncom-
fortable.
One of the few seemingly universal sensations that many people with ASd
tolerate, and even crave, is intense pressure. Grandin discovers this when, as a
child, she wraps herself tightly in blankets; later, when she works as an animal
scientist designing slaughterhouses, she is especially concerned that the animals
feel no stress or pain at the facilities she designed. One devicethe squeeze
chuteseems to calm animals down dramatically, even in the most stressful of
environments. It consists of two side panels that press into a cows sides, hold-
ing it immobilized while being vaccinated or receiving medical treatment. In
fact, Grandin writes, gentle pressure on the sides of a piglet will cause it to fall
274 Rachael Groner

asleep, and trainers have found that massaging horses relaxes them (Thinking
83). Copying the design of the squeeze chute, Grandin builds a smaller scale
squeeze machine to fit her human body; over time, she arrives at a design that
gives her control over the level of the pressure the panels provide, though she
describes being completely immobilized: As I developed my squeeze machine, I
designed it to enhance the feeling of being embraced. Now, if I suddenly resist, I
cannot pull my head out of the softly padded neck opening. In order to open the
latch, I have to relax and lean forward. I am never locked in the machine, but I
am prevented from suddenly pulling away from the soothing pressure (Thinking
80). While Grandin would probably not make this connection herself, someone
who read her description of the squeeze machine out of context might easily as-
sume that it is intended to produce sexual pleasure. Readers may note the simi-
larities, indeed, between the descriptions of Grandins experience and those of
bdSM and other sexual practices that involve restraint and/or physical pressure.
The embrace of Grandins squeeze machine may not be explicitly sexual, but
her description of the experience reads very much like sexual pleasure.
The squeeze machine performs an additional function for Grandin beyond
physical stimulation. There is, for her, a language of pressure that the machine
speaks to her. The slightly varying sensations of the machine are the tactile
equivalent of a complex emotion and [it] has helped me to understand com-
plexity of [human] feelings (90). Grandins career is focused on nonhumans
cattle and other farm animals in particularand she describes learning about
complexity and about human relationships through her animal relationships. She
writes of cows, for example, that [b]eing autistic has helped me to understand
how they feel, because I know what it is like to feel my heart race when a car horn
honks in the middle of the night. I have hyperacute senses and fear responses
that may be more like those of a prey-species animal than of most humans (Ani-
mals 155).
Athough Grandin disavows sexuality, she nonetheless embraces a form of
sexual or sensual expression. And because her expression of sexuality or sensu-
ality is disconnected from heteronormative narratives of sex and love, it seems
to me that it is strikingly queer. Grandin is not only undoing heteronormativity,
by showing it as something she can refuse, but also creating an alternative sexu-
ality and sensuality that has its own language, its own set of practices, and its
own equipment. Queer theories of performativity call for repetitive citations of
mainstream discourse as a means of disrupting it. By rearticulating sex and sen-
suality in denaturalized, new, and potentially queer forms, Grandin and other
Sex as Spock 275

ASd writers may contribute to the undoing of normative sexual identities and
practices, which are inaccessible or undesirable.
In creating a new language or practice of queerness through ASd, these nar-
ratives also unsettle heteronormative assumptions about the role of emotion in
sexuality and sensuality. The traditional assumption that sexuality is intimately
related to love is not upheld in these autobiographies; as is common in queer
theory, concepts such as love and pleasure are questioned. What is love? What is
pleasure? How do I know that what I feel as joy is the same as what another per-
son feels when he or she uses the same word? Grandin writes that she has never
felt the emotion of joy and that the closest she comes to it is the feeling she
has when she completes an intellectual challenge. Many people with ASd have
written that safety and security are perhaps the most descriptive words for what
they liken to nt emotions such as love or passion. Danny Jacobs, for example,
told his wife that for him, love equals security; he believes safe is the best word
to express his feelings for her (74). Maxine Aston, who has interviewed many
people with ASd about sex, tells the story of a couple, composed of one nt person
and one person with ASd, who told her about the first time they had sex. Aston
writes that the nt woman disclosed to [her partner] how special it had been to
her and asked him how it had been for him. He replied in all honesty that he had
felt disappointed at the time. She was shocked by this and asked why he was dis-
appointed. He said because he expected her to have bigger breasts and that he
was surprised that one breast in particular was not as big as the other. She was
absolutely devastated by this remark and her confidence and self-esteem took a
severe knock (47). The man did not understand how his words might be inter-
preted, and his partner did not understand that he, like many people with autism,
was being normal for him by being very literal and direct with his language.
In troublingly ableist language, Aston calls this phenomenon feeling deafness,
even arguing that some people with ASd literally lose their hearing when en-
countering words that express or describe emotion (48). One productive avenue
for discussion (beyond the scope of this chapter) is to find ways to describe and
discuss emotion among ASd people as valid in and of itself. As yet, there are only
the beginnings of a movement for ASd pride regarding emotional and cultural
differences. The ASd autobiographies and other texts I discuss in this chapter
participate in this movement by advocating acceptance and valuation of a wider
spectrum of emotional expression than nt culture recognizes.
Prince-Hughes is one writer with ASd who attempts to formulate a sense of
pride in her difference from the nt world. In her autobiography, she recounts
276 Rachael Groner

that she initially takes a job as an exotic dancer because it affords her the ability
to stop living in the streets of Seattle and to get an apartment and other basic
necessities. She continues dancing, however, because it allows her to explore her
burgeoning sexuality in a relatively safe environment. The club where she works
is owned and managed by fellow dancers, and there is an atmosphere of support
and care among her peers. Further, she usually dances on a stage behind a glass
wall; a curtain goes up or comes down based on a customers payment. One of
her most insightful points is that the objectification of women by the male cus-
tomers seems to reflect a lack of feeling and emotion; Prince-Hughes assumes
that these men show emotion elsewhere, but that in order to fully objectify an-
other person as they do at the club, they turn off emotions temporarily. For her,
this kind of disconnection is dangerous and disrespectful. Although people with
ASd often describe being disconnected from emotion, there is a distinct differ-
ence between her cold male customers and people with ASd: These respectable
citizens were doctors, lawyers, city council members and had a choice in how
to express emotion and sexual desire, but she was without choice, trapped behind
an emotional glass wall that echoed the physical glass wall around the dancers
stage (78). The metaphor of a glass wall is common in autistic peoples descrip-
tions of their lives, as in Wendy Lawsons Life Behind the Glass: A Personal Ac-
count of Autism Spectrum Disorder. When she is a dancer, Prince-Hughes has not
yet been officially diagnosed with autismthat happens in her thirties, as a result
of her own research about why she feels so different from other peoplebut she
has chosen a profession whose trappings make literal a metaphor that she and
others with ASd frequently use to describe themselves.
It is not until Prince-Hughes begins to work at the Seattle Zoo that she feels
truly liberated. Through another powerful metaphor she reveals more about
herself as a sexual and sensual being. She writes that when she first begins to visit
the zoo, she heard the clang and moan of the opening door down the hall and
woke up from the dream I was in. It was a dream about waking up, and it was
coming true (110). Prince-Hughes works directly with gorillas, as a volunteer
and then an employee. The moments she describes with the gorillas are those in
which she begins to truly understand the nt world for the first time. Her first
intimate encounter with a gorilla occurs when, as a zoo volunteer, she is feed-
ing strawberries to Congo, a large silverback male. Although she is under strict
orders to keep her hands away from his, their fingers touch, and their eyes meet:
I relaxed into his touch and his nearness. This is what it is, I thought. This is
what it means to love and be loved. This is what it is to touch and look at another
Sex as Spock 277

person and feel its meaning. This is what it is to not be alone in the vastness of
the space we hurtle through among the coldness and the dying. This is what it is
to live, I thought (6).
Unlike any physical, sexual, or emotional connection Prince-Hughes has ever
made before, even with family members, her encounter with Congo allows her
to break what she experiences as the glass wall of her autism. She immediately
decides to work with gorillas full time and to return to school; she dives into yet
another learning experience, this time about gorilla and human culture. In the
gorillas, Prince-Hughes sees much of herself: like her, they have difficulty re-
maining calm when there are loud noises; they dislike crowds of people; and
when people invade their carefully monitored public space, they create small
nests in which to hide, for comfort or solace. Prince-Hughes says that gorillas
are also awkward around human beings, and, although they seem intellectually
capable of learning human behaviors, they usually refuse to do so.
Over time, Prince-Hughes realizes she is learning how to be an nt human
being through her relationships with the gorillas. For example, she learns from
them how to put other people at ease with quick sideways glances and smiles
which evolved from submissive primate grimaces and are intended to convey
that no harm is meant (136). Such cues, which nt people had seemed to know
instinctively, Prince-Hughes was previously unable to learn or practice. Perhaps
most important, she writes that she learns how to feel and express something like
nt emotion through her sensual interactions with the gorillas. Prince-Hughes
does not quite claim that ASd emotion is as valid as nt emotion; but among other
autism narratives, hers comes closest to doing so.
Coming out: writing autiStiC, writing Queer
Numerous historical and political commonalities exist between the ASd and
lGbtQ communities. One of the commonly held beliefs about autism, for ex-
ample, was Bruno Bettelheims now-rejected theory of the refrigerator mother,
in which autism was thought to be caused by a cold and unloving mother. Simi-
larly, cold and unloving mothers were once thought to be the cause of homo-
sexuality. An even more striking coincidence between the two communities is
that one of the main treatments for symptoms of autism is applied behavior
analysis (AbA), a system founded by Dr. O. Ivar Lovaas in the 1960s and prac-
ticed today by doctors, therapists, and educators. With funding and support from
278 Rachael Groner

the National Institute of Mental Health, among other mainstream organizations,
Lovaas and several of his followers developed programs aimed at training chil-
dren to replace bad behaviors with good ones. AbA was initially used in the
uclA Feminine Boy Project, in which boys who preferred feminine behaviors,
like playing house or nurturing dolls, were forced to play in masculine ways,
such as with toy guns. The projects tactics included aversives, such as physical
restraints, slaps, pinches, hits, hair pulling, electric shocks, and exposure to nox-
ious odors or tastes (Dawson). While AbA is still practiced today in fields such
as child and educational psychology, there is a general consensus that severe
aversives are inhumane and ineffective. Lovaas was not the sole pioneer of what
is often called the ex-gay movementa movement to cure or convert homo-
sexuals through AbA methodsbut his work was significant in bringing it to the
mainstream. Lovaas was also not focused solely on homosexuality; he believed
that AbA could help people address any and all bad behaviors. Proponents of
AbA argue that it can reduce the stress on autistic children and adults by train-
ing them to assimilate their behaviors to normative standards. For example, the
Autism Resource Foundation, among other organizations, says in its online Fre-
quently Asked Questions about AbA that [a]lthough AbA does provide the best
methods for managing problem and aberrant behavior such as self-injurious,
ritualistic, repetitive, aggressive and disruptive behavior, it does this through
teaching alternative pro-social behavior.
As the numbers of people diagnosed with ASd have grown in recent years, so
have the organizations dedicated to supporting people with autism. A loose con-
glomerate of people, an autism community, has sprung up. The autism commu-
nity has begun to organize politically and, in the process, has looked for models
to emulate, such as the Deaf community. But it is the gay community that seems
to have the most influence within the ASd community, perhaps in part because
of the common history with AbA. The autism activist Phil Schwartz, for example,
writes that the gay community has built and leveraged large numbers of straight
allies; he suggests that the autism community would do well to practice similar
techniques. In a similar parallel to the lGbtQ movement, a group named Aspies
for Freedom petitioned the United Nations in 2004 for recognition as a social
minority group (a minority based on something nonbiological or physical, but
recognizable all the same). Not unlike many segments of lGbtQ communities
who see homosexuality not as the opposite of heterosexuality but as a point on
a sexual continuum, members of Aspies for Freedom are vocal proponents of a
Sex as Spock 279

neurodiverse spectrum, in which autism is a variation of neurological function,
not a separate or pathological category.
As I have argued, the sexuality and sensuality of people with ASd may indeed
be read as queer, regardless of partner, activity, or intention. To again adapt a
phrase from Halberstams F2M: all people with ASd are queer, and no people
with ASd are queer. In demonstrating the nonheteronormative performativity
of sexuality in these autobiographies, my intention is not to reify a new category
of queerness or disability that is stable or simplistic; nor is my point that queer-
ness and ASd are equivalent. But I certainly hope, again following McRuer, to
have perpetuated the crisis in heteronormativity by recognizing texts written by
people with ASd as doing similar work to that of queer texts, even when the ASd
texts in question are not representing same-sex sexual desires or practices. The
autobiographical narratives I have explored here are starting to write autism into
existence as queer, disallowing a discourse in which autism is solely defined as a
medical and neurological disorder. In fact, these narratives complicate what we
mean by disability in yet another layer than just the mind and body split, for by
writing themselves as queer, they provoke further consideration of how disability
studies itself is queer.
noteS
I am grateful to Anna Mollow, who provided rigorous and supportive comments on

multiple drafts of this chapter, and to Gabriel Wettach, who gave me comments on this
chapter in its earliest draft form.
1. By heteronormativity, I mean to describe a set of hegemonic practices, norms,
and institutions of heterosexuality in contemporary American culture. A good working
definition of heteronormativity is articulated by Lauren Berlant and Michael Warner:
Heteronormativity is more than ideology, or prejudice, or phobia against gays and
lesbians; it is produced in almost every aspect of the forms and arrangements of social
life: nationality, the state, and the law; commerce; medicine; and education; as well
as in the conventions and affects of narrativity, romance, and other protected spaces
of culture. It is hard to see these fields as heteronormative because the sexual culture
straight people inhabit is so diffuse, a mix of languages they are just developing with
premodern notions of sexuality so ancient that their material conditions feel hardwired
into personhood (55455).
2. Cal Montgomery, although she has referred to her cognitive disability as an in-
visible one, argues that there should not be a distinction between visible disabili-
ties, which are often physical, and invisible ones, which are often cognitive. There are
280 Rachael Groner

exceptions to each category: some physical disabilities manifest themselves without
obvious visible markers, and some cognitive disabilities have visible physical manifes-
tations. Even more important, Montgomery says, we must account for diversity within
the disability community so that we can remove all of the barriers mainstream society
presents.
Sex as Spock 281

V
deSireS
14
anna Mollow
iS Sex diSability?
Queer theory and the disability drive
angry_kitten
On a June afternoon in 2004, I logged onto Nerve magazines online personals

site. Perhaps because my as-yet-unwritten talk for that years MlA panel on sex
and disability was in the back of my mind, my eye was caught by one of that days
featured profiles. It belonged to angry_kitten, a young woman who wrote that
the Celebrity I resemble most is Larry Flynt as a girl. Except not overweight
or in a wheelchair. Clearly, this witticism implies that if references to Hustler
magazine are sexy, especially when made by a girl, then disability is not: being
overweight or in a wheelchair, that is, constitutes the antithesis of desirability.
Angry_kittens self-representation thus performs a disavowal of disability that
the genre of the online personal ad seems to demand; health, slenderness, and
the regular pursuit of athletic activities are among the most heavily advertised
attributes on online dating services.
But angry_kittens quip can also be read in another way. Her insertion of the
phrase in a wheelchair into a personal ad arguably augments the transgres-
siveness that her self-comparison to Larry Flynt seems designed to signal; it may
have the effect not only of distancing her from wheelchairs and other ostensibly
unsexy images but also of metonymically linking the wheelchair, through its
association with Larry Flynt, with the pornographic. By connecting disability to
both sexual excess and sexual lack, angry_kittens personal ad encapsulates two
apparently opposing ways of thinking about sex and disability. Both of these
modes are familiar to disability scholars, who have pointed to ubiquitous cul-
tural representations of disabled people in terms of sexual deficiency, while also
calling attention to pervasive associations of disability with excessive sexuality.
For example, cognitively disabled people are commonly depicted as childlike and
asexual but are also often feared as uncontrollable sexual predators.1 Similarly,
websites for amputee devotees present disabled women in terms that evoke
sexual excess (a photo of an amputee woman shopping or washing dishes is suf-
ficient to provide compelling erotic entertainment) and simultaneously em-
phasize lack (A woman is not whole if she does not have something missing!
www.amputee-devotee.com announces) (Gregson 2).2
These contradictory constructions of disability create a double bind for
people with disabilities: if disability can easily be interpreted as both sexual lack
and sexual excess (sometimes simultaneously), then it seems nearly impossible
for any expression of disabled sexuality to escape stigma. A liberal politics of dis-
ability might respond to this problem with a reasoned refutation, pointing out
that people with disabilities are as sexual as nondisabled people and are no more
likely to be freakishly or excessively so. In support of this claim, one might
observe that a person with a spinal cord injury has not lost his or her sexu-
ality, or that theres nothing inherently pornographic or kinky about an image of
a short-statured person engaging in sexual intercourse.3 Yet the cultures unwill-
ingness to accept these eminently reasonable claims, its persistent insistence that
disabled sexuality is somehow both lack (innocence, incapacity, dysfunction)
and excess (kinkiness, weirdness, perversion), suggests that something more
than reasoned discourse will be necessary in order to understand and respond
to the energies that drive this illogical, intractable conception of sex and dis-
ability.
These energies might usefully be read in relation to what psychoanalysis
terms the death drive. In making this argument, I am drawing on writing by
Leo Bersani and Lee Edelman, which is often cited as exemplifying an anti-
social or antirelational thesis in queer theory. Bersani and Edelman do not
theorize disability as such, but as I will demonstrate, their arguments about
a destructiveness that may be both inherent in sexuality and incompatible with
286 Anna Mollow

liberal politicsor perhaps even with any form of politics or sociality at allare
highly relevant to disability theory.
In choosing the term disability theory rather than disability studies, I
mean to signal a possible difference between these two discourses. For disability
theory, I propose, sex can no longer be conceived of as a subfield or specialized
area of investigation (to which a new anthology might be devoted); rather, dis-
ability theory insists, through its sustained engagement with theories of sexu-
ality, that it is impossible to think about either term, sex or disability, with-
out reference to the other. This is because, as I will demonstrate, sex in a sense
is disability: the concepts of sexuality (as it is elaborated in psychoanalytic
theory) and of disability (as it is figured in the cultural imaginary) share pro-
found structural similarities; in some instances, they could even be described as
two names for the same self-rupturing force. Psychoanalysis calls this force the
death drive; in this chapter, I propose that it might also be named the disability
drive. To foreground associations between disability and the death drive means,
as we shall see, theorizing disability in terms of identity disintegration, lack, and
suffering. Such terms may seem inimical to a politics of disability liberation. But
in this chapter I critique politics of disability that emphasize identity formation
and pride, exploring instead the benefits of highlighting those aspects of sex and
disability that undercut and perhaps even preclude assertions of humanity.4
Can diSability tHeory Have no future ?
The Child whose innocence solicits our defense: this ubiquitous cultural figure
is the target of No Future, a polemic against an ideology that Edelman defines as
reproductive futurism (2). We are no more able to conceive of a politics with-
out a fantasy of the future, Edelman argues, than we are able to conceive of a
future without the figure of the Child (11). The invocation of this figurewhich,
Edelman makes clear, is not to be confused with the lived experiences of any his-
torical childreninvariably serves to uphold the absolute privilege of hetero-
normativity (11; 2). Therefore, impossibly, against all reason, No Future stakes
its claim to the very space that politics makes unthinkable (3). Queerness, Edel-
man asserts, names the side of those not fighting for the children; that is, the
social order ascribes a fundamental negativity to the queer, who is structurally
defined in opposition to the Child (No Future 3). While liberal politics, putting
its faith in reason, seeks to refute this characterization of queerness, Edelman
proposes that queers might do better to consider accepting and even embracing
Is Sex Disability? 287

it (No Future 4). Queers, Edelman maintains, should respond to homophobia not
only by insisting upon equal rights within the social order but also: By saying
explicitly what Law and the Pope and the whole of the Symbolic order for which
they stand hear anyway in each and every expression or manifestation of queer
sexuality: Fuck the social order and the Child in whose name were collectively
terrorized; fuck Annie; fuck the waif from Les Mis; fuck the poor, innocent kid
on the Net; fuck Laws both with capital ls and with small; fuck the whole net-
work of Symbolic relations and the future that serves as its prop (No Future 29).5
This impassioned polemic is one that disability theory might well take to
heart. For the figure that Edelman describes as the disciplinary image of the
innocent Child is inextricable not only from the cultural politics of queerness
but also from those of disability (No Future 19). After all, it is in the name of the
Child whose innocence solicits our defense that ritual displays of pity regularly
demean disabled people: Please, Im begging for survival. I want my kids alive,
Jerry Lewis implores, countering disability activists protestations against his as-
sertion that a disabled person is half a person (qtd. in Johnson, Too Late 58, 53).
Youre against Jerry Lewis! a surprised passerby exclaims to Harriet McBryde
Johnson as she hands out leaflets protesting the Muscular Dystrophy Associa-
tion, his surprise likely informed by a logic similar to that which, in Edelmans
analysis, undergirds the use of the word choice by advocates of legal abor-
tion: Who would, after all, come out for abortion or stand against reproduction,
against futurity, and so against life? (Johnson, Too Late 61; Edelman, No Future
16). Similarly, why would anyone come out for disability, and so against the child
who, without a cure, might never walk, might never lead a normal life, might not
even have a future at all?
The logic of the telethon, in other words, relies on an ideology that might be
defined as rehabilitative futurism, a term that I propose might operate along-
side, and often in intersection with, Edelmans reproductive futurism. Because
if the future, as Edelman maintains, is always imagined in terms of a fantasmatic
Child, then the survival of this future as the Child is, as the telethon makes
clear, threatened not only by queerness but also by disability. Indeed, futurity
is habitually imagined in terms that fantasize the eradication of disability: a re-
covery of a crippled (or hobbled) economy, a cure for societys ills, an end to suf-
fering and disease. Eugenics sterilization and euthanization of disabled people
is an instantiation of a futurism grounded at once in reproductive and rehabili-
tative ideals: procreation by the fit and elimination of the disabled, eugenicists
promised, would bring forth a better future.
288 Anna Mollow

Consider also Edelmans argument that the lives, the speech, and the free-
doms of adults face constant threat of legal curtailment out of deference to
imaginary Children whose futures . . . are construed as endangered by the social
disease as which queer sexualities register (No Future 19). Replace the words
social disease with disease, and queer sexualities with disabled bodies
and Edelmans remarks precisely articulate the connections disability activists
and scholars have made between the proliferation of images of pitiable disabled
children and the curtailment of actual disabled peoples freedoms: in the United
States today, nearly two million disabled people are confined to institutions,
while poster children and their contemporary correlatives fixate a culture in-
vested in the fantasy of a future without disability.
Given all these interconnections, it is tempting to advocate that disability
theory adopt No Future as one of its own canonical texts. But of course adoption,
in its many forms, has well-known pitfalls. Noting that it is often lGbt people
themselves who deliver the message . . . of compulsory reproduction, Edel-
man cites Dan Savages self-congratulatory claim that adopting a child means
choosing something more meaningful than sit-ups, circuit parties, and designer
drugs. For me and my boyfriend, bringing up a child is a commitment to having
a future (qtd. in Edelman, No Future 75). Textual adoption also has downsides,
which Ellen Samuels highlights in her critique of the wholesale adoption of
[Judith] Butlers theoretical framework by disability scholars (Critical 64). Is
it not necessary, Samuels wonders, to at least ask if there is a difference between
disability/impairment and gender/sexand, since there obviously is, how that
difference operates in the present situation? (Critical 64). Also relevant in this
context is Trina Grillo and Stephanie M. Wildmans famous critique of like race
analogies, which, they argue, often have the effect of stealing the center stage
from people of color (621).
In this chapter, rather than treating queerness and disability as definable cate-
gories whose differences might be elided by the imprecise use of analogy, I am
interested in confounding the meaning of each. In many ways, No Future seems
to invite such an approach: Edelman steadfastly resists the framing of queerness
as an identity whose claims might be diminished by other groups appropria-
tions. Queerness, he maintains, refuses every substantialization of identity (4).
However, Edelmans claim to eschew identity politics is regarded by some queer
theorists as specious. In Cruising Utopia: The Then and There of Queer Futurity,
Jos Esteban Muoz characterizes No Future as a form of white gay male crypto-
identity politics (95); Edelmans work (and Bersanis), he suggests, practices a

distancing of queerness from . . . the contamination of race, gender, or other par-
ticularities that taint the purity of sexuality as a singular trope of difference (11).
Such particularities, it is true, receive relatively marginal attention in No
Future. Race is mentioned in a brief footnote; in another note, Edelman observes
that the sinthomosexual, his texts privileged figure for imaging queerness, is
most frequently imagined in our culture as being embodied by machinelike men
rather than women (165, n. 10). A marginalization of topics such as race and gen-
der, Edelman might seem to imply, is a crucial aspect of his argument: after all,
queer theory marks . . . the side outside all political sides (No Future 7). Yet
No Futures argument unfolds against a backdrop of references to issues of clear
political relevance to lGbt people: gay marriage, domestic partnership benefits,
antidiscrimination ordinances for lGbt employees, papal pronouncements about
homosexuality, queer-baiting of children, and hate crimes against queers. The em-
brace of queer negativity may, as Edelman insists, entail a refusal of any determi-
nate stance or position, but No Futures argument against reproductive futurism
would be far less compelling without its repeated references toand indeed its
implied positionality in relation tothese recognizably political issues (4).
Does this lend support to Muozs charge that No Future is invested in a form
of stealth identity politics (94)? If, according to Edelmans argument, queers are
singled out, or distinctively called, to perform the rather glamorous-sounding
work of figuring the availability of an unthinkable jouissance, then are the par-
ticular concerns of women, people of color, and disabled people (who may, of
course, also be queer) hopelessly mired in the political (109; 26; 39)? Is queer
antifuturism, as Judith Halberstam argues of gay shame, a White Gay Male
Thingand perhaps, by extension, also a nondisabled thing (220)?6 It has
been clear to many of us, Muoz writes in an earlier critique of No Future, that
the antirelational in queer studies was the gay white mans last stand (Think-
ing 825).7
But in pointing to a possible dearth of discussion of race and gender (and,
one might add, disability) in No Future, its critics have not established that its
arguments depend upon such exclusions. On the contrary, No Futures claims
about queernesss relationship to negativity and the death drive can be enhanced
through an analysis of their potential application to, and intersection with, other
minoritizing discourses. Focusing primarily on disability (perhaps one of the
other particularities toward which Muoz gestures?), I argue that queer anti-
social theory should beand in many ways, already isa disabled thing. In
making this argument, I take seriously Edelmans insistent refusal of identity
290 Anna Mollow

politics and his expansive definition of queers as all so stigmatized for fail-
ing to comply with heteronormative mandates (No Future 165, n. 10; 17). I thus
understand No Future as suggesting that the embrace of negativity it advocates
for queers must also be available to all subjects whom our culture abjects. Such
an embrace may indeed be ethically imperative, Edelman argues, because those
of us inhabiting the place of the queer may be able to cast off that queerness and
enter the properly political sphere, but only by shifting the figural burden of that
queerness to someone else (No Future 27).
Nor, according to my reading of No Future, does choosing to accept the
structural position of queerness, as Edelman advocates, mean abandoning all
political projects (27; emphasis in original). It is politics as we know it, or every
acknowledged politics, that Edelman refuses (No Future 3; emphasis added). In
turning away from what will count as political discourse, No Future assigns to
queer theory an impossible project that might, despite itself, be described as
political: that of imagining an oppositional political stance exempt from the
imperatives of reproductive futurism (11; 27; third emphasis added). Moreover,
Edelman would have queer theory undertake this project without wholly relin-
quishing the politics we do know, that is, while continuing to insist on our equal
right to the social orders prerogatives (No Future 29).
I therefore read No Future not as advocating that goals such as gay marriage
or accessible workplaces be surrendered, but rather as insisting that the work of
queer theoryand, I propose here, of disability theoryis also to unsettle the
assumptions that underlie these goals. No Future issues a troubling challenge: can
we envision a politics not framed in terms of futurism or a futurity not grounded
in reproductive (or, I ask here, rehabilitative) ideology? Insofar as reproductive
(and perhaps also rehabilitative) futurism seem invariably to give shape to the
only politics were permitted to know, Edelmans refusal of the political cannot
easily be dismissed (No Future 134).
take tiny tim
Before disability theory considers taking No Future as a text of its own, we may
first wish to consider Edelmans take on disability. In support of his argument,
in the second chapter of his book, that acts that make visible the morbidity in-
herent in fetishization (such as antiabortion activists penchant for displaying
photographs of fetuses) are by no means outside the central currents of social
and cultural discourse, Edelmans Exhibit A is Tiny Tim:

Take, for example, Tiny Timor even, with a nod to the spirit of the late
Henny Youngman, take Tiny Tim, please! His withered little hand, as
if in life already dead, keeping us all in a stranglehold as adamant as the
iron frame supporting his little limbs . . . ; his plaintive little voice
. . . refusing any and every complaint the better to assure its all-pervasive
media magnification, in the echoes of which, year in and year out, God
blasts us, every one . . . and his patient and . . . mild . . . disposition so
thoroughly matching the perfect humility of its coercive self-display that
his father with tremulous voice recalls how Tiny Tim hoped the people
saw him in the church, because he was a cripple, and it might be pleasant
to them to remember upon Christmas Day, who made lame beggars walk,
and blind men see. . . .
Very pleasant indeed. And more pleasant by half than remembering,
instead, who made lame beggars lame (and beggars) and who made those
blind men blind. But then, A Christmas Carol would have us believe that
we know whom to blame already, know as surely as we know who would
silence the note of that plaintive little voice and require that the active
little crutch . . . kick the habit of being leaned on. (No Future 4142)
The preceding passage may not at first appear to bode well for a disability theory
adoption. For one thing, it evinces no particular interest in the politics of dis-
ability oppression: the implied referent to the who that made lame beggars
lame (and beggars) and who made those blind men blind is, presumably, the
same God who putatively made them walk, and seerather than, as the social
model of disability would insist, social structures and architectural and attitudi-
nal barriers. And the who that might require that the active little crutch kick
the habit of being leaned on is not, as this formulation might suggest in another
context, a rehab counselor or occupational therapist. It refers rather to Scrooge,
Edelmans first example of a canonical literary instantiation of what he calls
sinthomosexuality, his neologism for an antisocial force that he identifies with
queerness (No Future 39).
Given the frequency with which disabled people are portrayed as Tiny Tims,
the cultural opposition that Edelman identifies between the Child and the sin-
thomosexual might seem to indicate a fundamental opposition between queer-
ness (or sinthomosexuality) and disability (or the Child). But the relationship
among these terms in No Future is more complex than this schema would sug-
gest. In order to gain a fuller view of this complexity, we must turn to Edel-
292 Anna Mollow

mans explication of Lacans concept of jouissance. Lacanian jouissance, Edel-
man writes, entails a violent passage beyond the bounds of identity, meaning,
and law (No Future 25). According to Lacan, jouissance is unnamable, and
for this reason it is akin to the quintessential unnamable, that is to say death
(qtd. in Edelman, No Future 25). Jouissance can take two very different forms. In
the first, Edelman explains, it gets attached to a particular object or end, thus
congealing identity around the fantasy of satisfaction or fulfillment through
that object (No Future 25). The death drive is manifested in this first version of
jouissance when it produces identity as mortification (as it does, for example,
in fetishizations of fetal photos or of the withered little hand of Tiny Tim)
(No Future 25; 41). Lacans second version of jouissance, as Edelman describes it,
tears at the fabric of Symbolic reality as we know it; it evokes the death drive
that always insists as the void in and of the subject (No Future 25). Bound up
with the first of these death drives is the figure of the Child; bound up with the
second is the figure of the queer (No Future 2526).
If the Child and the queer occupy opposing sides of this paradigm in No
Future, where is disability? It is everywhere. Disability is bound up with the
Child, as suggested not only by Edelmans analysis of Tiny Tim but also by his de-
scription, in an earlier version of No Futures first chapter, of an antiabortion bill-
board as a poster child for children and by his characterization, in his book, of
the Catholic Church as blindly committed to the figure of the Child (Kid 24;
No Future 29). And disability figures importantly in the reading of Silas Marner
that follows Edelmans discussion of A Christmas Carol; the sightless eyes and
catalepsy of George Eliots protagonist aid in making the apparition of the child
Eppie seem miraculous (No Future 55).
But disability is also enmeshed with the queerness to which, in Edelmans
analysis, the Child is opposed. It can be seen in Scrooges stiffened gait and
in the figure of Captain Hook, whom Edelman describes, along with Scrooge,
as embodying a drive toward death that entails the destruction of the Child
(No Future 44, 21). And according to Edelmans analysis of North by Northwest,
the films villain, Leonard, embodying sinthomosexuality, is deaf to claims of
human fellowship (No Future 20). Then there is irony (that queerest of rhe-
torical devices [No Future 23]), which, according to Paul de Man, produces
dizziness to the point of madness (qtd. in Edelman, No Future 87). Tropes of
disability are also present in what Edelman reads as Jean Baudrillards panicky
offensive against reproduction without heterogenital copulation, in which sex
is described as devolving into a useless function and humans are distinguished

(unsuccessfully, Edelman argues) from the order of the virus (qtd. in Edelman,
No Future 64, 62).
Edelmans apt reading of these remarks of Baudrillard in relation to what was
once called the gay plague, as well as his own plays on the word bent, suggest
that it can often be difficult, in homophobic and ableist culture, to distinguish
between queerness and disability (No Future 62; 90).8 Antigay religious leaders,
Edelman notes, characterize queer sexualities as unhealthy and ugly, and
ministries of hope offer cures to those who have grown sick-to-death of being
queer (No Future 91; 47).9 Against the pathology or social disease as which
queerness is diagnosed, queer-baiting of children, Edelman argues, functions
as a form of antigay immunization, while the narrative of A Christmas Carol
serves as an annual booster shot (No Future 143; 19; 49).
These repetitive references to disability suggest that disability, along with
irony and queerness, might be another name for what Edelman calls the re-
mainder of the Real internal to the Symbolic order (No Future 25). Indeed, dis-
ability metaphors often seem to be the closest approximations to a name for the
unnamable that Lacan posits as the death drive. The terms Edelman uses to
describe the death drive include wound, fracture, stupid enjoyment, mind-
less violence, lifeless machinery, senseless compulsion, disfiguration, and a
shutdown of lifes vital machinery (No Future 22; Kid 28; No Future 38; 23; 27;
38; 37; 44). Although these signifiers do not directly refer to specific impairments,
they do, taken together, evoke the physical and mental injury and dysfunction as
which disability is commonly understood.
And then there is Edelmans term sinthomosexuality, a neologism formed
by grafting, at an awkward join, the word sexuality onto Lacans term sin-
thome. Lacans sinthome is an archaic way of spelling symptom (qtd. in
Edelman, No Future 33). The etymology of Edelmans term, then, is something
like symptom-sexuality. However, the Lacanian sinthome means more than
simply symptom; as Edelman explains, it refers to the particular way each sub-
ject manages to knot together the orders of the Symbolic, the Imaginary, and the
Real (No Future 35). The sinthome is the only means by which the subject can
access the Symbolic order of meaning production; but paradoxically, because
of its stubborn particularity (each subjects sinthome is as individual and as
meaningless as a fingerprint), its unintelligibility or untranslatability, the sin-
thome also threatens the Symbolic order to which it provides access (Edelman,
No Future 6; 36).
294 Anna Mollow

Both this access and this threat are figured as disability. In order to be consti-
tuted as a subject and to take ones place within the Symbolic order, one must be
metaphorically blind: the cost of subjectivity is blindness to this determination
by the sinthome, blindness to the arbitrary fixation of enjoyment responsible
for [the subjects] consistency, blindness to the functioning of the sinthome
(Edelman, No Future 36; 38). The alternative to subjectivity as disability would be,
according to Lacan, radical psychotic autism (qtd. in Edelman, No Future 37).
That is, whatever might alleviate our constitutive blindness by exposing the
sinthome as meaningless knot must effect a disfiguration, the consequences of
which would be pure autism (iek 81, qtd. in Edelman, No Future 38). On the
one side, blindness; on the other, disfiguration, psychosis, autism: when it comes
to recognizing the senselessness of ones sinthome, it seems were disabled if we
do, disabled if we dont.
All this is enough to make one wonder why the death drivewhich has less
to do with literal death than with figuring a strange persistence of life in death,
or of death in life (perhaps like the living death, or life not worth living,
of which disability is often supposed to consist)is not called the disability
drive. Writing of the contingency of disability as an identity category, Michael
Brub observes: Any of us who identify as nondisabled must know that our
self-designation is inevitably temporary, and that a car crash, a virus, a degenera-
tive genetic disease, or a precedent-setting legal decision could change our status
in ways over which we have no control whatsoever. If it is obvious why most
nondisabled people resist this line of thinking, it should be equally obvious why
that resistance must somehow be overcome (viii). Might part of this resistance
be attributable to a fear that, in the car crash or other identity-shattering event,
it might be the drivers own hand that makes that disabling turn; that is, that the
driver might be driven by an impulse, unwanted and unconscious, toward some-
thing beyond the principles of pleasure and health? Adding the name disability
drive to the terms for this beyond might enable us to understand the means
by which images of disability seem so powerfully to both excite and repel, to be-
come, as Tobin Siebers writes, sources of fear and fascination for able-bodied
people, who cannot bear to look at the unruly sight before them but also cannot
bear not to look (Disability in Theory 178).
Signs of a disability drive may be manifested in Edelmans discussion of Tiny
Tim. Take, for example, Edelmans contention that the pleasurable fantasy of
survival in Dickenss story requires the survival of the fantasy that Tiny Tim

does not excite an ardent fear (or is it a fearful ardor?) to see him . . . at last cash
in his chips (No Future 45). Its a familiar cultural fantasy: cure em (as Dickens
might hope) or kill em (as Edelman suggests readers must secretly wish). In this
unacknowledged wish, however, there may be more at stake than either killing
or curing. In the chapter that follows his reading of A Christmas Carol, Edelman
adduces Lacans discussion of the legend of Saint Martin, who was said to have
cut his own cloak in two in order to give half of it to a beggar. Perhaps, Lacan
suggests, over and above that need to be clothed, [the beggar] was begging for
something else, namely that Saint Martin either kill him or fuck him (qtd. in
Edelman, No Future 83). Drawing upon this passage in his analysis of North by
Northwest, Edelman proposes that as Leonard (played by Martin Landau) at-
tempts to push Cary Grants Roger Thornhill to his death from atop Mount Rush-
more, he enacts . . . the one [killing] as displacement of the other [fucking] (No
Future 85). Killing as displacement of fucking: might a similar displacement be
at work in Edelmans attribution, to Dickenss readers, of a fearful ardor to see
Tiny Tim at last cash in his chips (No Future 45)?
As evidence for this suggestion, take the mode by which Edelman introduces
his discussion of A Christmas Carol: Take Tiny Tim, please!, with a nod to the
spirit of the late Henny Youngman renders Tiny Tim wifelikeclearly undesir-
able in this context, but not wholly uneroticized (No Future 41). And then there
is the word take, which, particularly when followed by the word please, as
it is here, has a meaning other than the ones Edelman seems deliberately to in-
voke: take means fuck, and so Edelmans directive to Take Tiny Tim, please!,
which echoes his earlier injunction to fuck Annie; fuck the waif from Les Mis;
fuck the poor, innocent kid on the Net, seems to authorize an additional impera-
tive: fuck Tiny Tim. Fuck here means, of course, remove or the hell with,
but it also means fuck.10
And dont these two ways in which No Future says fuck Tiny Tim coincide
with what disability theory most ardently desires? Fuck Tiny Tim, please!: rid
us, please, of this most reviled textual creation. And also: if it is our cultural
mandate to embody this pitiable, platitude-issuing, infantilized, and irritating
figurewell, then fuck us, every one. Fuck us because figuratively, we are already
so fucked by our cultures insistence, through this figure, that the disabled are
not fuckable. And this insistence, No Future gives us the tools to understand,
must be understood as a displacement; propelling every cultural representation
of disability as undesirable, I propose, is a fearful ardor, an unacknowledged
drive.
296 Anna Mollow

iS Sex diSability?
Sex, linguistic convention suggests, is inseparable from disability: we speak of

being blinded by love or going mad with desire; we say we suffer from lovesick-
ness and succumb to fits of passion. Lust renders us dizzy and weak in the knees.
In the throes of desire, we tremble, stammer, forget our words, and lose our
memories. But in other ways, common sense indicates that sex is not disability:
a sensory impairment is not the same as an orgasm; a building without ramps is
not equivalent to the merging of bodies in sexual acts; the experience of chronic
pain differs from the sensation of a first kiss with a new lover. Such literal cor-
respondences are not what I have in mind when I ask, as I do in the remainder
of this chapter, whether sex is disability. In particular, I wish to be clear that I
am not suggesting, as Freud claimed, that individuals become sick or disabled
as a means of fulfilling unconscious desires. On the contrary, I consider Freuds
theories of primary gain (according to which ill people derive erotic enjoyment
from their ailments) and secondary gain (in which disability is desired because
it confers social rewards) as themselves symptomatic of the disability drive, that
is, of the ways in which, in the cultural imagination (or unconscious), disability is
fantasized in terms of a loss of self, of mastery, integrity, and control, a loss that,
both desired and feared, is indissociable from sexuality.
This argument is analogous to those Edelman makes in relation to queerness.
Noting that our culture ascribes to queer sexualities an intrinsic murderousness
and suicidality (as evident in some right-wing commentators assertions that
male homosexuality constitutes a culture of death, a natural outcome of which
is serial killing),11 Edelman advocates more than a simple refutation: Without
ceasing to refute the lies that pervade these familiar right-wing diatribes, he
asks, do we also have the courage to acknowledge, and even to embrace, their
correlative truths? (No Future 40; 22). For Edelman, these correlative truths
are twofold: all sexuality is destructive, not in the sense of effecting literal death,
but in the threat it poses to the integrity of the subject and thus to the social
order; and for this reason queers, onto whom the dominant culture projects the
destructive aspects of sexuality it refuses to acknowledge in itself, should wel-
come their association with the death drive. Edelman thus responds to a minori-
tizing, essentializing, and homophobic formulation (gay men as murderers) not
through disavowal (really, our sexuality is gentle and loving) but through a nu-
anced reworking of it (all sexuality is destructive in complicated ways that should
be embraced).

I take a similar tack in my argument about a disability drive, a term that I
posit not as a name for a new instinct that could empirically be validated or
disproved, but as another appellation forand thus another way of understand-
ingwhat psychoanalysis calls the death drive. At the same time that I contest
the widespread ableist and minoritizing assumption that people with chronic
pain and illness enjoy and perhaps even cause their impairments, I also ask:
what would it mean to embrace this assumptions correlative truths? As a way
of beginning this exploration, I turn to Bersanis essay, Is the Rectum a Grave?
Published in 1987, during the early years of the AidS pandemic, this still highly
influential essay seeks to understand the phobic, hostile, and blaming attitudes
directed at gay men during this time. These attitudes, of course, remain in play
today. Indeed, I would propose that Is the Rectum a Grave? should be con-
sidered a key text for contemporary disability theory. Although Bersanis essay
doesnt employ terms such as ableism or disability, it powerfully articulates
connections between ableism and homophobia; that is, it analyzes the ways in
which ableismmanifested here as a murderous hatred directed at people with a
particular impairmenthas legitimized an unleashing of homophobic rage
(Rectum 28; 19).
Drawing on psychoanalytic theory in order to account for this convergence
of ableism and homophobia, Bersani asks why, in dominant cultural discourses
about AidS, gay men are represented as killers (Rectum 17). This question
brings up issues that intersect both with Edelmans concerns in No Future (gay
men as murderers) and those I am raising here (disabled people as blameable for
impairments ostensibly resulting from perverse sexual enjoyment). What is it
exactly, Bersani asks, that makes [gay men] killers? (Rectum 17). Everyone
agrees that the crime is sexual, but the imagined or real promiscuity for which
gay men are so famous, Bersani suggests, may be less important than cultural
fantasies surrounding anal sex: Women and gay men spread their legs with
an unquenchable appetite for destruction. This is an image with extraordinary
power; and if the good citizens of Arcadia, Florida could chase from their midst
an average, law-abiding family, it is, I would suggest, because in looking at three
hemophiliac children they may have seenthat is, unconsciously represented
the infinitely more seductive and intolerable image of a grown man, legs high in
the air, unable to refuse the suicidal ecstasy of being a woman (Rectum 18).12
But why suicidal? In part, Bersani proposes, because To be penetrated is
to abdicate power (Rectum 19; emphasis in original). Writing against what he
refers to as the redemptive reinvention of sex, Bersani contests the common
298 Anna Mollow

assumption that sexuality is in its essence, less disturbing, less socially abra-
sive, less violent, more respectful of personhood than it has been in a male-
dominated, phallocentric culture (Rectum 22; emphasis in original). This
notion, Bersani argues, informs an entire range of positions on the battlefield
of sexual politics, from antipornography activism to celebrations of bathhouses
and SM (Rectum 22). Against this redemptive projecta project inspired, he
maintains, by a profound moral revulsion with sexBersani asserts that sex
is, at least in certain of its ineradicable aspectsanticommunal, antiegalitarian,
antinurturing, antiloving (Rectum 22; emphasis in original). Eschewing re-
demption, Bersani asks, as Edelman does in No Future, what it would mean to
insist upon, and even to celebrate, sexualitys imbrications with the death drive:
if the rectum is the grave in which the masculine ideal . . . of proud subjectivity
is buried, then it should be celebrated for its very potential for deathnot the
biological death brought about by AidS, but rather the risk of self-dismissal,
of losing sight of the self (Rectum 29; 30; emphasis in original). Sex, Bersani
argues, threatens the sacrosanct value of selfhood, a value that accounts for
human beings extraordinary willingness to kill in order to protect the serious-
ness of their statements (Rectum 30).
This argument is highly relevant to disability theory, not only because Bersani
articulates it here in relation to AidS phobia but also becauseeven more impor-
tant for my purposes in this chaptermuch of what Bersani claims that sexuality
ineradicably is could be understood as disability. This can be seen, for instance,
in Bersanis argument that a gravely dysfunctional aspect of what is, after all, the
healthy pleasure we take in the operation of a coordinated and strong physical
organism is the temptation to deny the perhaps equally strong appeal of power-
lessness, of the loss of control (Rectum 2324; emphasis added). In this formu-
lation, what might be termed able-bodiedness (health, pleasure, coordination,
strength) seems, on the one hand, to be opposed to terms commonly associated
with disability (powerlessness, loss of control) but, on the other hand, to be
itself disabling (there is a gravely dysfunctionalor, we might say, severely
disabledaspect of this healthy pleasure).13 Similarly to Edelman, Bersani
seems to be arguing that what stabilizes and gives coherence to the subject is in
a sense disabling (metaphorically blind for Edelman, literally dysfunctional
for Bersani) and yet, paradoxically, that these disabling congealments of identity
serve as defenses against a more radically disintegrating force, which I have been
calling the disability drive, in which sexuality and disability begin to merge.
In The Freudian Body (which was published in 1986, one year before Is the

Rectum a Grave?), Bersani argues that the most radical originality of psycho-
analysis . . . has to do with a disabled consciousness (6; emphasis in original).
The disabled aspect of consciousness to which Bersani refers is sexual; psycho-
analytic theory and therapy resist, but cannot escape enacting, the devastat-
ing pleasures of an eroticized and inherently dysfunctional consciousness
(Freudian 6). This eroticized and dysfunctional (or sexual and disabled) con-
sciousness is manifested in a certain type of failure in Freuds thought, which
Bersani wants to celebrate in The Freudian Body (3). This failure, or theoreti-
cal collapse, Bersani figures as disability: psychoanalytic reflection on desire,
he writes, is paralyzed and madly excessive; a beneficent discursive paraly-
sisor at the very least, a beneficent discursive stammering is at the heart of
Freudian discourse (Freudian 5; 31). Such beneficent symptoms appear, Bersani
argues, when what Freud wants to be saying about topics such as sexuality and
the death drive comes into conflict with the conclusions to which, apparently de-
spite his intentions, his arguments seem to be leading.
This can be seen, for instance, in Three Essays on the Theory of Sexuality, in
which Freuds teleological argument (according to which orality and anality are
stages of development on the road to a mature heterogenitality) is undermined
by a competing characterization of sexuality that Bersani draws out, according to
which the abortive, incomplete, and undeveloped beginnings of our sexual life
constitute and exhaust its essence (Freudian 40). This abortive, incomplete and
undeveloped essence of sexuality can be understood as disability; it refers to
what Bersani calls a biologically dysfunctional process of maturation in which
we desire what nearly shatters us (Freudian 39). According to the strand of
thought that Bersani isolates in Freud, the pleasurable unpleasurable tension
of sexual excitement occurs when the bodys normal range of sensation is ex-
ceeded, and when the organization of the self is momentarily disturbed (Freud-
ian 38). Thus, sexuality would be that which is intolerable to the structured self
(Freudian 38). Sexual pleasure enters the Freudian scheme, Bersani quotes Jean
Laplanche as noting, within the suffering position (qtd. in Freudian 41). The
mystery of sexuality is that we seek not only to get rid of this shattering tension
but also to repeat, even to increase it (Freudian 38; emphasis in original). For
this reason, Bersani famously asserts, sexuality . . . could be thought of as a tau-
tology for masochism (Freudian 39).
Might it also be thought of as a tautology for disability? Disability, not nec-
essarily in any phenomenological or ontological sense, but rather as it is com-
monly figured: as undeveloped, abortive, or unpleasurable, as loss of self,
300 Anna Mollow

failure, dysfunction, collapse, the suffering position. Sex is disability: we
desire what nearly shatters us; we desire what disables us. But, it might be ob-
jected, doesnt such a claim derive from precisely the model of disability that we
should be contesting? After all, disability scholars and activists have insisted that
disability is not failure, dysfunction, loss, or sufferingthat instead it is merely
a form of physical or mental differenceor rather, that it is the social process by
which benign human variations are stigmatized as failure, loss, or lack. And so
one might argue that, in the interests of upholding this redefinition, we should
critique, rather than embrace, Bersanis and Edelmans uses of disability as meta-
phor for these abjected states.
Is it possible, though, that the project of reinventing disability as difference
rather than suffering or loss is informed by a moral revulsion not unlike that
which inspires the redemptive reinvention of sex that Bersani critiques (Rec-
tum 22; emphasis in original)? The redemptive reinvention of sex, like the re-
definition of disability I have been describing, emphasizes the value of diversity.
The revulsion, Bersani characterizes this project as arguing in relation to gay
male sexuality, is all a big mistake: what were really up to is pluralism and di-
versity, and getting buggered is just one moment in the practice of those laud-
able humanistic virtues (Rectum 26). Or: the pity and fear are all a big mistake;
what were really embodying is variation and difference, and suffering and loss,
if they are present at all, are insignificant aspects of the disability experience.
It is perhaps necessary, Bersani writes, to accept the pain of embracing, at
least provisionally, a homophobic representation of homosexuality (Rectum
15). Might we consider, analogously, embracing a representation of disability that
some would consider ableist? Sex and disability, I am arguing, can be read
in psychoanalytic discourse as two names for, or perhaps two sides of, the same
process: that which Bersani calls the terrifying appeal of a loss of the ego, of a
self-debasement (Rectum 27). Although we are more likely to call that which
is terrifying about this self-debasement disability and that which is appeal-
ing sex, the profound imbrication of these two terms is evident in the multiple
instances in Bersanis and Edelmans work (and in the writing of Freud, Lacan,
Laplanche, and others whom they cite) in which disability is called upon to figure
the self-rupturing aspects of sex. The redemptive reinvention of sex denies this
imbrication, seeking to move sex away from disability as it is commonly under-
stood (what nearly shatters us); a redemptive reinvention of disability may
move disability away from sex, at least as sex is understood in psychoanalytic
accounts (that which is intolerable to the structured self ) (Bersani, Freudian

39; 38). Therefore, if revulsion or disavowal characterize our responses to con-
structions of disability as that which debases or nearly shatters our selvesthat
is, if we insist instead on our personhood and pridewe may risk contributing
to an already pervasive cultural desexualization of disability. And in refusing sex
as disability, we also risk obscuring what Bersani perceives as the inestimable
value of sex (and, I would add, of disability): the threat they pose to the integ-
rity of the self, or ego, in defense of which humans have been so willing to kill
(Rectum 22). Moreover, in seeking to cast off stigma, in asserting proud dis-
abled identities, the best we can hope for may be, to adapt Edelmans words,
shifting the figural burden of [disability] to someone else (No Future 28).
Edelman, as we have seen, posits queerness as the name for the structural
position that bears the burden of figuring the negativity of the death drive (No
Future 27; emphasis in original). This structural position could also be under-
stood as disability. Indeed, sexor, more precisely, the negativity that Bersani
and Edelman each describe as inhering in sexualityis, their work makes clear,
always also disability: the stammering, paralysis, autism, blindness, psychosis,
deafness, dysfunction, loss, lack, suffering, incompleteness, and disease as which,
in their writing and the psychoanalytic discourse that informs it, this negativity
is repeatedly figured.
Pitiable or diSrePutable
I wish to be clear that the argument I am making about the disability drive is
not a minoritizing one, according to which some people (whom we call maso-
chists) find disability eroticor, conversely, some people (whom we call dis-
abled) are secretly masochistic. Rather than thinking of sex and disability pri-
marily in relation to identities (such as the masochist or the disabled person), I
want to examine the ways in which these identity categories function to cordon
off, as the particular concerns of a minority group, what I am arguing are better
understood as ubiquitous mergings of sex and disability. Reading the disability
drive in this way, I suggest, may have important implications for how disability
is understood in a range of contexts, including those not immediately legible as
sexual. In particular, the concept of the disability drive may provide a way of
responding to problems that have beset disability studies construction of dis-
ability as a minority identity.
This construction, in its emphasis on visible difference and its downplaying
of suffering, has sometimes had the effect of marginalizing invisible impairment
302 Anna Mollow

and illness, as writers such as Samuels, Liz Crow, and Susan Wendell have ob-
served.14 Chronic illness, pain, and depression, according to these writers, dont
always conform to disability studies dominant models. Indeed, they may even
seem to contradict them. For example, people with chronic pain, rather than
contending with maudlin displays of pity, must often labor to convince others
that they are genuinely suffering, not just looking for attention.
These critiques persuasively demonstrate a need to differentiate between
common cultural responses to disabling illness (which is often invisible) and
visible disability (which often does not involve sickness). Interestingly, though,
even some forms of visible bodily difference dont quite fit disability studies
foundational paradigms. For example, fat people are less likely to be pitied as
victims suffering from a tragic disease than to be blamed for overeating and
other forms of self-indulgence.15 Indeed, the question of blame seems crucial
here: in which contexts are disabled people regarded as victims, and in which are
they seen as agents, of their impairments? With this question in mind, I propose
that alongside arguments distinguishing between illness and bodily difference,
or between visible and invisible disability, we might consider, as an additional
heuristic, a distinction between representations of disability as pitiable or as
disreputable.
Disability studies has had much to say about figurations of disability as piti-
able, in which unwanted sympathy precludes recognition of any enjoyment dis-
abled people might find in lives assumed to be not worth living. The field has
had less to say about an inverse process, often operating in relation to disabilities
that contemporary culture deems disreputable, in which sympathy that may be
desired (as well as accommodation) is withheld from disabled people who are
blamed for impairments imagined to derive from unhealthy enjoyments (e.g.,
fatness, alcoholism, addiction, hiv, AidS, psychiatric disability, or chronic ill-
ness with no clearly defined medical cause).16 Yet these apparently divergent cul-
tural responses to disabilityimaged as precluding enjoyment or, alternatively,
as deriving from excessive enjoymentare shown to be interconnected when,
reading sex and disability together, we understand the enjoyment in question
as eroticand when, using the concept of the disability drive, we take measure
of the complex ways in which the eroticism infusing cultural figurations of dis-
ability circulates. Pervasive cultural fantasies of (pitiable) disability as foreclos-
ing possibilities of pleasure, and of (disreputable) disability as arising from in-
dulgence in destructive pleasure, have something crucial in common: they each
eroticize disability (or, we might say, they fantasize it in sexual ways), and they

each do so without acknowledging the enjoyment such fantasies afford to those
who indulge them.
Take, for example, the father of psychoanalysis, who is also a likely progenitor
of the its all in your head skepticism that many people with chronic illness or
pain confront. Where hysteria is found, Freud asserts, there can be no ques-
tion of innocence of mind (Dora 42). Thus, his patient Elizabeth von R. ap-
pears to experience a voluptuous tickling sensation when Freud touches her
painful leg (Studies 137); Doras sore throats derive from a history of childhood
masturbation and an unconscious desire to fellate her father; and Freud suggests
that the nosebleeds of another patient are due to her longing for him (qtd. in
Masson 101; emphasis Freuds). In what might be interpreted as the analysts
desire for his disabled patients to desire him, we can discern signs of a disability
drive. That is, what might appear as merely a stubborn refusal, on Freuds part,
to allow for any distinction between his patients disabilities and their sexuali-
ties may point us to the stubbornness of a drivea drive that insists, as we have
seen, on the indisseverability of sex and disability. And I suggest that the enjoy-
ment such a drive may affordnotwithstanding Freuds oft-quoted protestation
that he is simply claim[ing] for [him]self the rights of the gynaecologist, not
gratifying sexual desiresis by no means confined to the hysterics (or their
contemporary correlatives as somatizers or hypochondriacs) whose bodies
and minds are made to figure this indisseverability (Dora 3).
Sex as disability, figured as the pathology of a disabled minority, can be made
to signify a sexualized disreputability, in regard not only to hysterics or hypo-
chondriacs, whose deviant desires can putatively be read on their bodies, but
also to those termed promiscuous, addicted, compulsive, or queer, who
are blamed for spreading AidS; the obese or overweight, who supposedly
cant get enough of the food they are said to substitute for sex; and the men-
tally unstable, whose sexual urges, it is feared, are unchecked by normal in-
hibitions. Paradoxically, though, sex as disability also infuses the minoritizing
construction of disability as pitiable. I know what theyre all thinking. My dick
doesnt work, John Hockenberry writes (87). He recounts being asked by a flight
attendant: I guess you are the first handicapped person I have ever seen up close.
Have you ever thought of killing yourself? The airline worker then voices her
other big question: Can you, I mean, can your body, I mean are you able to do
it with a woman? (Hockenberry 97).
The flight attendants excited questioning evinces signs of the disability drive,
which we might also refer to as a compulsion toward, to adapt Bersanis words,
304 Anna Mollow

the suicidal ecstasy of being [disabled] (Rectum 18). Disability, it seems, is
erotically charged, even (or especially) when it is imagined to negate the possi-
bility of sexual enjoyment. Indeed, the argument I have been making, that sex
in some ways is disabilitythat is, that sex and disability often serve as
different signifiers for the same self-disintegrating forceenables us to perceive
elements of sexual fantasy in the familiar statement, Id kill myself if I were
disabled.
diSabling tHe Human
Not wishing to be seen as either disreputable or pitiable, disabled people have

protested: those with chronic fatigue, chronic pain, or chemical sensitivity insist
that their impairments have biological, rather than psychosocial, causes; wheel-
chair users explain that they value and enjoy their lives; blind or deaf people re-
iterate that they dont necessarily long to see or hear; some people with psychi-
atric disabilities emphasize that theirs is an organic disease of the brain, not an
alibi for laziness or other character flaws, while others argue against the construc-
tion of mental illness as a category of disease. Taken together, each of these
ways of reframing disability can be seen as participating in a broader project,
articulated by disability studies and the disability rights movement, of allowing
disabled people to be recognized as human beings (rather than merely the ob-
jects of the dominant cultures fantasies, sexual or otherwise). Hence, the title of
the Berkeley poet and journalist Mark OBriens autobiography: How I Became
a Human Being. OBriens answer to the question his books title implies is un-
equivocal: it was the disability rights movement that enabled him to escape the
living death of nursing homes and to be treated, for the first time, as a human
being (Human Being 3; 4).
But here a problem emerges: as we have seen, the writing by Bersani and Edel-
man that I have examined forwards powerful arguments against the project of
becoming human. Urging queers to embrace the inhumanity of the sinthomo-
sexual, Edelman observes that the liberal goal of expanding the category of
human to encompass those presently excluded from it will not stop the cul-
tural production of figures made to embody the inhumanity of the death drive
(No Future 107).
What would it mean for disability theory to embrace disabled peoples figu-
ration as inhuman? As we contemplate this possibility, a moment from How I
Became a Human Being may give us pause. After a presentation by the physi-

cist Stephen Hawking at the U.C. Berkeley campus, OBrien posed the following
question: Doctor Hawking, what can you say to all the disabled people who are
stuck in nursing homes or living with their parents or in some other untenable
situation and who feel that their life is over, that they have no future? (Human
Being 230). A response that might be derived from Edelmans bookthat there
is, and can be, no future, since the future, by definition, can only ever be a fan-
tasy (always / A day / Away, in Annies paean to Tomorrow)hardly seems
more adequate than Hawkings reply: All I can say is that one must do the best
one can in the situation in which one finds oneself (No Future 30; Human Being
231).
In light of OBriens question, Edelmans embrace of the death drive, or Ber-
sanis celebration of what he calls the breakdown of the human itself in sexual
intensities, can easily appear as irresponsible theoretical indulgences (Rectum
29). Indeed, the word irresponsible is one that Bersani himself uses when he re-
flects, at a distance of thirteen years, on Is the Rectum a Grave?: Much of this
now seems to me a rather facile, even irresponsible celebration of self-defeat.
Masochism is not a viable alternative to mastery, either practically or theoreti-
cally (Sociality 110). This remark highlights important shifts and ambivalences
in Bersanis thinking over the course of his career, which may serve as an entry
into the question of the status of the human in disability theory.
Bersani and Edelman are often cited, as if in the same breath, as proponents of
an antisocial or antirelational thesis in queer theory, in opposition to which
some critics of their work, such as Muoz, have defined their own projects as
utopian.17 But Bersanis work, rather than conforming to either side of a uto-
pian/antirelational binary, often reveals an interest in thinking in both of these
ways at once. For example, writing of passages in his book, Homos (published in
1995) that are frequently cited as the origin of the antirelational thesis, Bersani
describes the performance of antirelationality that he celebrates in Jean Genets
Funeral Rites as a utopic form of revolt (Sociality 103; emphasis added). This
joining of the utopian and the antirelational corresponds to what Bersani de-
scribes, in an essay published in 2004, as a central concern throughout his career:
a dialogue (both conciliatory and antagonistic) between Foucault and Freud
(Fr-oucault 133). In this essay and other recent writings, Bersani moves away
from the Freudian and toward the Foucauldian. Worrying that the psycho-
analytic (or antirelational) side of this paradigm may be politically irresponsible
(insofar as its insistence on the intractability of the death drive seems resistant
306 Anna Mollow

to any social transformations whatsoever), Bersani has become increasingly
interested in the creation of what, invoking a phrase of Foucaults, he calls new
relational modes (Fr-oucault 134).
Interestingly, this admittedly utopic project often employs a rhetoric of
futurism, both reproductive and rehabilitative (Bersani, Fr-oucault 134). For
example, in a reading of Platos Symposium, Bersani approvingly observes that
the goal of a love relation with Socrates is the bringing to term of the others
pregnancy of soul (Sociality 110; 117).18 Not only a pregnancy but perhaps also
a rehabilitation of the soul is at stake at moments in which a utopian impulse is
evident in Bersanis workas when, for example, he speaks of effecting a cura-
tive collapse of social difference, or of enabling a future enjoyment of as yet un-
articulated pleasures that have thus far been suppressed and crippled (Homos
177; Fr-oucault 137; emphasis added).
If, as these examples suggest, Edelman is correct in asserting that we cannot
think of the future without reference to the Childand if I am right in suggest-
ing that the overlapping ideology of rehabilitative futurism is equally pervasive
and insidiousthen how should disability theory answer OBriens question?
The disability rights movement, of course, has already provided compelling re-
sponses: protestations against the injustice of institutionalization, critiques of
the nursing home lobby, and advocacy for attendant programs. Theoretically, it
could be said that the goal of de-institutionalization is merely a liberal one, as it
aims only to include disabled people within the social fabric. Yet in this instance
(and many similar ones), an imperfect politics clearly seems better than no poli-
tics at all.
But what is the role of disability theory in relation to this politics? Is it, as
Paul Longmore described disability studies in 2003, to serve as the academic
counterpart to disability rights advocacy (Burned 2)? Or should disability
theory conceive of itself as sometimes in tension with this movement (as queer
theory often is in relation to the mainstream lGbt movement)? Insofar as it has
acted as a counterpart to the disability rights movement, disability studies has
made crucial contributions to what might be called a humanizing enterprise. It
has offered, for example, myriad analyses of the reasons for our societys willing-
nessits desperation, evento dehumanize and exclude disabled people, even
to the point of locking them up.
But when sex enters the picture, things get complicated. Consider, for ex-
ample, the following remark, made by a doctor to a group of patients at one of

OBriens rehabilitation hospitals: You may think youll never have sex again,
but remember . . . some people do become people again (Human Being 80). The
doctors comment points to a paradox that inheres in any conversation about
sex and disability: disabled people, it is implied here, are less than fully human
because they are presumed not to have sexbut sex, psychoanalysis shows
us, is radically dehumanizing, effecting a shattering of the structured self
rather than its entrenchment in personhood or identity. This paradox is at the
root of the double bind I discussed in the introduction to this chapter, in which
disability simultaneously figures sexual excess and sexual lack: disabled people
are regarded as sexually deficient and therefore not fully human, but at the same
time, disabled people register as less than human because disability is the ubiqui-
tous figure for a dehumanizing, identity-disintegrating force that resembles sex.
If, as the second half of this paradoxical construction suggests, assertions of
humanity are in necessary conflict with expressions of sexuality, then perhaps
disability theory should, rather than seeking to humanize the disabled (insisting
that disabled people be treated as human beings), instead ask how disability
might threaten to undo, or disable, the category of the human. It might do so
in part by attending to the insights Bersanis and Edelmans readings of psycho-
analytic theory yield, according to which sex, far from enabling us to become
people, ruptures the self and dehumanizes us all.
But what, then, would become of disability politics? Critics of No Future
despite Edelmans insistence that its argument pertains to figurality, not to
being or becoming the death drivetend to read the book as advocating, on
a literal level, the abandonment of hope and political goals (No Future 17; 25).19
As noted earlier, however, it is politics as we know it that Edelman refuses, and
even this refusal does not mean that queers should stop insisting on our equal
right to the social orders prerogatives (No Future 3; 29; emphasis added). Edel-
man further clarifies this point in his essay Ever After: Without for a moment
denying the importance that distinguishes many [political] projects, I want to
insist on the need for an ongoing counterproject as well: a project thats willing
to forgo the privilege of social recognition (473; emphasis added).
Such a counterprojectone that can be read as possibly opposing the human-
izing impulse behind OBriens narration of How I Became a Human Beingmay
take shape in some of OBriens own poetry. While the title of his autobiography
speaks of becoming human, his unpublished poem Femininity disrupts this
trajectory. OBrien writes of lying:
308 Anna Mollow

Naked on the gurney
in the hospital corridor,
surrounded by nurses,
tall, young, proud of their beauty,
admiring my skinny cripple body.
Youre so thin,
you shouldve been a girl.
I wish my eyelashes
were as long as yours.
Such pretty eyes.
I thought
or think I thought
or wish Id said,
But your bodies work.
Get scissors,
cut my cock and balls off.
Make me a girl,
without anaesthesia,
make me a girl,
make me a girl.20
Much of the unnerving intensity of these lines derives from what, invoking Ber-
sani, we might refer to as their embrace of the suicidal ecstasy of being a woman
(or a girl, or queer, or disabled); from their rejection, that is, of the ideology of
rehabilitative futurism, and from their refusal to engage in a redemptive re-
invention of sex or disability. OBriens speaker does not plead with the nurses
who admire his skinny cripple body to cure me or make me walk again.
Nor does he attempt to redefine his body (which does not work) as merely a
manifestation of human variation. Suffering and lack, rather than being dissoci-
ated from disability, are amplified and eroticized: cut my cock and balls off . . .
without anaesthesia, the speaker implores, the repetition of his plea (make me
a girl, / make me a girl) evoking the repetitiveness of a drive.
Femininity can indeed be read as an instantiation of the disability drive: dis-
ability in this poem, like the rectum in Bersanis essay, is the grave in which
the masculine [and nondisabled] ideal of proud subjectivity is buried. It will of
course be tempting to evade this nightmare of ontological obscenity (Rec-

tum 29), this fantasy of un-becoming human.21 But the dehumanizing double
binds that so persistently structure cultural representations of sex and disability
suggest that such evasions may be futile. Intrinsically obscene, yet inherently
asexual: rather than attempting to assume a different position within this impos-
sible paradigm, disability theory should perhaps underscore its pervasiveness as
evidence of a disability drive; as a sign, that is, that our cultures desexualization
of disabled people functions to defend against a deeply rooted but seldom ac-
knowledged awareness that all sex is incurably, and perhaps desirably, disabled.
noteS
This chapter benefited greatly from thoughtful comments from Robert McRuer, Ellen
Samuels, and Joshua J. Weiner.
1. See Michel Desjardinss and Michelle Jarmans chapters in this volume for discus-
sions of social perceptions of cognitively disabled peoples sexualities.
2. For a thorough discussion of the sexual politics of amputee devoteeism, see
Alison Kafers chapter in this volume, as well as her essays Amputated Desire, Resistant
Desire: Female Amputees in the Devotee Community and Inseparable: Constructing
Gender through Disability in the Amputee-Devotee Community.
3. Barbara Faye Waxman-Fiduccia discusses websites that equate disability with
kinkiness (Sexual). For a personal narrative about his friends assumptions that his
spinal cord injury rendered him sexually dead, see Hooper.
4. To take up influential arguments in queer theory regarding the self-rupturing
aspects of sexas well as disability, I propose in this chapterwould move disability
theory away from the identity politics that has predominated in disability studies. The
status of identity politics in the field is a central concern in two recent books that each
contain the word theory in their titles: Robert McRuers Crip Theory: Cultural Signs
of Queerness and Disability and Tobin Sieberss Disability Theory offer two contrast-
ing accounts of what crip and disability theory should look like. Disability theory, as
I construe it in this chapter, has more in common with McRuers crip theory, which
entails a critique of liberal identity politics, than with Sieberss disability theory, which
involves a defense of identity politics (Disability Theory 14). In this chapter I retain
the term disability (although I do also like crip), because I appreciate its gram-
matical negativity (dis) and because, in different ways from crip (which, despite its
increasingly flexible uses, does nonetheless, as it derives from cripple, seem to privi-
lege certain forms of impairment), disability has an extremely expansive definitional
capacity. For a critique of Sieberss earlier arguments in favor of identity politics, see
my essay Disability Studies and Identity Politics: A Critique of Recent Theory.
5. Laws with capital ls refers to former Boston Cardinal Bernard Laws contention
310 Anna Mollow

that health care benefits should be denied to same-sex partners of city employees on
the grounds that society has a special interest in the protection, care and upbringing
of children (qtd. in Edelman, No Future 29).
6. Halberstam seems to imply this when she writes, in her blurb of Muozs book:
Muoz insists that for some queers, particularly queers of color, hope is something
one cannot afford to lose and for them giving up on futurity is not an option.
7. Muozs response to No Future was part of an MlA panel in 2005, The Antisocial
Thesis in Queer Theory, that was moderated by Robert Caserio and also included
Edelman, Halberstam, and Tim Dean. The panelists positions were published the fol-
lowing year in PMLA.
8. The online journal Bent, which features True Stories of Disabled Gay Men, plays
on the dual connotations of this term. For analyses of the inextricability of ableism and
homophobia, see McRuers Crip Theory and Kafers Compulsory Bodies.
9. Susan Schweiks The Ugly Laws: Disability in Public offers a thorough analysis
of the connections between disability and ugliness, as manifested in the ugly laws
(antivagrancy ordinances that targeted visibly disabled people) in late nineteenth- and
early twentieth-century American cities.
10. Performance artist Greg Wallochs film, Fuck the Disabled, plays on these two
meanings of fuck.
11. Referring to the serial murders committed by Andrew Cunanan, whose victims
were mostly gay men, Gary Bauer and Peter A. Jay each called male homosexuality a
culture of death (qtd. in Edelman, No Future 3940).
12. Bersani refers to an incident in Arcadia, Florida, in which the house of a family
with three hemophiliac children believed to have hiv was set on fire. The communitys
hostility toward the family was defended by the towns mayor and his wife (Bersani,
Rectum 1617).
13. See McRuers Crip Theory for an intriguing argument about the critically queer
work that the phrase severely disabled might perform (3031).
14. See Crow; Wendell, Unhealthy and Rejected (1922); and Samuels, My Body.
See also Mollow, Disability and When.
15. Among fat scholars and activists, there is disagreement as to whether fatness
should be included under the rubric of disability. See Solovay 12870.
16. My pairing of the terms pitiable and disreputable is meant to serve as a flex-
ible heuristic, not a rigid binary; neither term always attaches in predictable ways to
any given form of disability. For example, a person with a mobility impairment might
be regarded in different contexts (or even simultaneously) as a pitiable victim and/or
as the deserving recipient of divine retribution, while someone with a terminal illness
might be pitied and/or blamed for unhealthy lifestyle choices.
17. See, for example, Muoz, Cruising 11.
18. This observation is part of a series of birthing metaphors Bersani adduces in
order to critique aspects of psychoanalysis. Similar metaphors appear in Homos, as

when Bersani writes approvingly of Genets narrator being orally impregnated by his
lover (178). These images, in conjunction with an emphasis on futurism (only what so-
ciety throws off . . . can serve the future) complicate Edelmans characterization of the
passage in which they appear as a profoundly influential analysis of the anticommu-
nalism of eros (Bersani, Homos 180; Edelman, No Future 176, n. 30). Also noteworthy
in this regard is Bersanis contention that SM is fully complicit with a culture of death
(Homos 97); as noted earlier, in another context Edelman forcefully critiques the uses
of the phrase a culture of death to describe queer sexualities (see note 11 above and
No Future 3940).
19. See Halberstams comment, note 6 above. According to Muoz, Edelman rec-
ommends that queers give up hope and advocates abandoning politics (Cruising
91). Lynne Huffer seems to have No Future in mind when she writes, Call me Polly-
anna, but I want a future: not a heteronormatively reproductive future-as-prison, but
an erotic, yes-saying queer heterotopia (186). Such responses, Teresa de Lauretis sug-
gests, do not account for what, in a textured analysis of No Future, she describes as the
books two discursive registers: the ironic and the literal, the figural and the refer-
ential, the literary or speculative register of theory and the empirically or fact-based
register of politics (258).
20. This excerpt was provided by the Mark OBrien papers, the Bancroft Library,
University of California, Berkeley.
21. An example of a humanizing reading of Femininity can be found in Sieberss
Disability Theory. Siebers provides extended and appreciative analyses of OBriens
poetry, which are valuable for their nuanced considerations of the poets complex re-
workings of conventional constructions of gender, sexuality, and disability. However,
the conclusion to Sieberss discussion of Femininity may obscure some of that com-
plexity. The poem represents disability identity as acceptance of lack, Siebers ac-
knowledges, but only insofar as lack appears as a marker of sexual power (Disability
Theory 173, emphasis added). And, Siebers continues, The poem understands femi-
ninity as symbolic of lack, but only insofar as lack appears specifically as the enactment
of sexual attractiveness (Disability Theory 173, emphasis added). Thus, Siebers con-
cludes, OBrien uses disability to confuse gender categories with sexual ones for the
purpose of rejecting the stereotypical asexuality of disabled people and asserting that
they desire to be both sexually active and attractive (Disability Theory 173). In order to
make the argument that countering stereotypes and asserting disabled peoples power,
agency, and attractiveness are central activities of Femininity, Siebers must attempt
to contain the effects of the poems eroticization of lack (lack is present, according to
Siebers, only insofar as it indicates sexual attractiveness or power). This reading thus
elides some of the most salient aspects of OBriens poem: its staging of a nightmare of
ontological obscenity in which sex and disability come together to negate, or disable,
potential assertions of pride, power, and humanity.
312 Anna Mollow

15
lennaRd j. daVis
an exCeSS of Sex
sex addiction as disability
I was a loving, caring man alright, but that loving and caring had to have its focus
on a woman who fed the loving and caring back to me in the framework of a sexual
relationship. Without that I was, figuratively, a polio victim without an iron lung.
Anonymous, Sex and Love Addicts Anonymous Handbook
Erotomania, or de Clrambaults syndrome, is the only sexual obsession that is

listed in the American Psychiatric Associations Diagnostic and Statistical Manual
of Mental Disorders, fourth edition, text revision (DSM- TR ), the bible of psy-
chiatric diagnosis. According to the DSM- IV- TR s definition,
IV- an erotomaniac
is a person who is obsessively in love with someone, usually famous or out of
reach, known either slightly or not at all. The erotomaniac believes either that
the desired person shares this passion too, or that given the right conditions, in-
cluding stalking, the beloved can be convinced to love the erotomaniac. Eroto-
mania is a medical diagnosis; the DSM- TR lists it under the heading Delu-
sional Disorders (American PsychiatricIV- Association 32425). John Hinkley Jr.,
who stalked Jodie Foster and shot Ronald Reagan, and Margaret Mary Ray, who
stalked David Letterman, could be diagnosed as erotomaniacs.
Erotomania is a psychiatric disorder, but is it a disability? It seems to fit the
medical model of disability as a pathology in need of rehabilitation or cure. It
also appears compatible with the Americans with Disabilities Acts (AdA) defini-
tion of disability as a physical or mental impairment that substantially limits one
or more of the major life activities. But erotomania is not covered by the AdA;
nor are its relatives, sexual addiction and sexual compulsivity, which, although
they are not listed in the DSM- TR, are recognized by many practitioners as
categories worthy of professional IV-treatment. Later in this chapter, I will discuss
the differences among these terms and explain why sexual addiction is not in-
cluded in the DSM- TR. For now, I wish to ask: What would it mean to under-
stand sex addictionIV- as disability? If we genuinely regard psychiatric disorders as
within the spectrum of disability, how can we make our established concepts of
disability fit with these disorders? For example, the identitarian model of Ameri-
can disability studies, articulated by Simi Linton in Claiming Disability, cele-
brates disability; I am proudly disabled is a statement imaginable according to
this model. Might the sex addict also proudly claim his or her status? Should
disability scholars and activists fight stereotypes or negative media portrayals of
adulterers, sex workers and their clients, and users of pornography?
One possible objection to viewing sexual addiction as a disability is that to
do so would mean condoning violent or threatening behavior such as stalking,
sexual assault, or sexual abuse of children. Yet most people who define them-
selves as sex addicts, or who receive treatment for related disorders, do not en-
gage in violent behavior. Moreover, many other psychiatric disorders, despite
being associated (usually incorrectly) with violence, nonetheless receive protec-
tion under the AdA and have been shown to be compatible with social models
of disability.
Applying the social model of disability to sex addiction, we might therefore
fight to remove the barriers that prevent sexual addicts from fully participating in
society. Should we contest the medicalization of sexual diversity? Decriminalize
prostitution? Forbid employers from discriminating against workers who have
multiple sexual partners, dress provocatively, or attend Sex and Love Addicts
Anonymous (SlAA) meetings? Are these concerns properly framed as disability
issues?
There are no easy answers to these questions. They show that our models of
disability are unsuited for describing many psychiatric disorders. They also high-
light a need, articulated by Shelley Tremain, for understanding not only disability
but also specific impairments as socially constructed categories. That is, in addi-
314 Lennard J. Davis

tion to asking what social barriers oppress sex addicts, we must also ask how
sexual addiction came to be understood as a disorder and what ideological work
its construction as such performs.
What is sexual addiction? According to popular and medical literature,
sexual addictionor the related category, sexual compulsivityis character-
ized by an undue or abnormal focus on sexual activity. Sex addicts may mastur-
bate, copulate, or fantasize too much and/or with the wrong sort of people.
The masturbation may be so frequent, ten to twenty times a day, that it causes
damage to the genitalia. Sex addicts may seek out gratification with sex workers
or engage in risky behaviors. Or they may simply engage in the garden variety
of adultery, serial partners, or scopophiliac or exhibitionist behaviors, some of
which are defined as criminal. It is also possible to be a sex addict simply because
of a codependent relationship with one personor even with no person. A sex
addict may simply have a self-perceived excessive focus on sexuality as a mecha-
nism for providing relief or comfort. In all cases, the sex addict finds that his or
her sexual activity is so great that it interrupts the normal flow of his or her life
and the lives of other people.
Here are four first-person accounts of self-described sex addicts, all taken
from the Sex and Love Addicts Anonymous Handbook:
Before I was twenty years old, I had slept with more than a hundred men,
suffered from vd, had three suicide attempts, been sent to a psychiatrist
by the police and my parents, and had a baby whom I gave up for adop-
tion. . . . My husband and I had sex every day, but it was never enough. I
could not be happy or satisfied, and masturbated sometimes several times
a day. (SlAA 165)
My sexual acting out continued at graduate school in Ohio. But my act-

ing out became much more compulsive. I spent hours going from mens
room to mens room on campus, seeking brief encounters with men. . . . I
found my life taking on a pronounced split. By day, I was a graduate stu-
dent/teacher, respectable, intelligent, and urbane. By night, I was a driven
sex addict. I hung out in the bathrooms; I drank at the bars, I couldnt get
enough. (SlAA 173)
I knew that I was out of control. . . . [M]y sexual activities were more than
simply cheating on my wife. I was filling every available moment with sex
and spending a lot of time developing relationships, with sex as the sole
An Excess of Sex 315

purpose. . . . Even more important than the sex was the thrill of the chase,
the excitement of seeing whom I would be with the next weekend on a
business trip. . . . But it was beginning to wear thin again and I realized
that I was once again counting how many women I had, how many in the
last month, etc. (SlAA 180)
Much of what these men talked about [in SlAA meetings] I initially mis-
took for blatant (hetero)sexism. Of course men would sexually objectify
women or try to make them into their mothers, I told myself. But Im
a political, conscious lesbian. I dont do those things. Only I did, and in
much the same manner as the men did. . . . Because Im an addict, I have
looked to lovers and sexual partners to fill a void in me that cannot be filled
by another person. (SlAA 18889; 190)
Certain key words stand out in these sexual addiction narratives: abnormal,
too much, wrong, and, of course, normal. The point is that any discus-
sion of sex addiction will bring us back to a set of central concepts in disability
theory: the related ideas of normality, abnormality, deviance, difference, and so
on, as applied to the human body and the human mind. Sex addiction cannot
be separated from the normalizing discourses that, in the nineteenth century,
came to dominate thinking on sexuality and physical and mental difference. The
great sexual awakening (or disciplining, if you are a Foucauldian) of the nine-
teenth century was informed by a proliferation of ideas about sexual morality,
encouragement of reproduction under the protection of marriage, and many
theories relating sexuality to health.1 Moral physiologists and, as the century
progressed, sexologists lectured the public through marriage manuals and medi-
cal textsnow written in English for the general public rather than in Latin for
specialized medical audienceson the eugenic, negative, and positive aspects of
sexuality. Such books were for the most part prescriptive, attempting to define
deviant or perverse sexuality and to instruct readers, mostly men, on how to
have ideal marriages with healthful and proper sex lives. The sexual awakening
movement was a strange blend of progressive ideas about educating a sexually
ignorant population of men, so that they could give pleasure to their wives, re-
spect womens rights, protect the health of the couple, and understand a growing
body of knowledge about human sexuality and physiology. Deeply intertwined
in this narrative was a eugenic strain, which included birth control and selec-
tion of partners for better breeding.2 On the whole, these works saw sexuality as
something that had normal and abnormal parameters and that increasingly had

proper and improper techniques. The readers of such works were encouraged to
know about the normal body, genitals, and sexual function and how to do the
right things to the right body parts. Moralism and medical certainty governed
and disciplined sexual behavior.
This was more or less the state of affairs until the mid-twentieth century. Our
own time, ensuing from the sexual revolution of the sixties, offers fewer prescrip-
tive and descriptive norms. In many contexts, sexuality is seen as a good in and
of itself, although health and happiness are concomitant benefits, and the issue
of choice and negotiation between consenting adults is a new standard of cor-
rect behavior. The old questionshow many times a day, week, monthseem
fairly banal. Which orifice, which genital, which personall have increasingly
become open to question and acceptance. Fetishistic and sadomasochistic prac-
tices are no longer universally derided as deviant. In some locations, sadomas-
ochism (SM) and its codes of morality and behavior (safe words, negotiations of
scenes, etc.) are arguably almost mainstream; sexual toys, bondage equipment,
and erotic clothing are now available in suburban shopping malls. As a number
of sex researchers indicate, we have shifted from a discussion of the morality of
sexuality to a supermarket of sexual choices and a language of negotiation. No
longer is anything wrong in sexual relations, as long as whatever one desires is
negotiated to the satisfaction of the participants.
Notwithstanding this free-market, neoliberal approach to sexuality, aided by
the growth of the Internet, sexuality is not without its governing mechanisms.3 In
response to the efflorescence of sexual choices, a new obsessive category has been
created: the sex addict. As we have seen, sex addicts are said to be too interested
in sex or to have sex too much and often with the wrong kind of peoplenotably
other sex addicts, children, animals, or sex workers. Yet, in the language of ad-
diction, the problem is not so much the behavior per se but how you feel about
it. If you feel shame, guilt, or as if the behavior is taking over your life and caus-
ing financial or emotional ruin and so on, then you are an addict. But how you
feel about it is, of course, far from an individual matter. Ones feelings of shame
and guilt are deeply dependent on the social milieu that defines acceptable and
unacceptable behaviors, however openly or subtly.
Although the sex addict language tends to be gender, class, and race free,
framing the problem as one of individual choice and reform, there are certain
ways that gender, race, and class are inextricable from this discussion. The paired
concepts of nymphomania and satyriasis were among the earliest disorders the
discipline of sexology defined. While both of these conditions constituted what

William Cullen in 1827 called localized disorders of the genital organs, it was
nymphomania that stayed in the klieg light of medical attention, since women
were the focus of massive discussions around issues of chastity and desire in the
nineteenth century (qtd. in Berrios and Kennedy 386). As middle-class white
women were expected to be pure and chaste, the extreme of sexual excess was
seen as more unseemly in them. For a middle-class white woman, to have the
disorder of nymphomania meant to bear too strong a resemblance to poor
women and women of color, who were assumed to be excessively sexual.
In the twentieth century, the concept of addiction took up some of the regu-
lation of desire that sexologys concept of nymphomania had enforced in the
nineteenth century. Late twentieth- and early twenty-first-century sexual im-
peratives for women are complex and often conflicting, demanding sometimes
that women be highly sexual, but also stigmatizing inappropriate or excessive
female sexuality. The notion of sexual addiction is one mode of regulating too
much, or the wrong kind of, female sexual desire and activity.
To understand how sex addiction does this regulatory work, for women
and men, and even transgendered people, alike, we must turn to the history of
the broader concept of addiction. The term addiction, in the sense of being ad-
dicted to drugs or other substances, began to be used in the twentieth century.
People in the nineteenth century had a range of opiates and other drugs avail-
able to them without regulation or proscription. Anthony Giddens asserts that
in a traditional society, where ones behavior is socially determined, there is no
addiction; but in a society based on individual lifestyle choices, the idea of ad-
diction arises (7475). In fact, it is most likely that many of our grandparents
or great-grandparents were, according to modern-day definitions, addicted to
opiates or alcohol through the use of patent medicines, easily available through
local stores, peddlers, and pharmacies. Such opiates included the overused gripe
water, a tincture of opium used to quell fussy babies. The modern concept of
addiction arose in tandem with the banning of alcohol and then opiates, barbitu-
rates, and other drugs. In the United States, regulation of drugs occurred during
Prohibition when people turned from alcohol, now difficult to find, to marijuana,
opium, cocaine, heroin, and barbiturates. Given the logic of prohibition, if alco-
hol was banned, surely drugs should follow.4
Sexual addiction, as a concept, came out of the twelve-step program for alco-
holics, which itself began in 1936 with Alcoholics Anonymous (AA). The twelve-
step message entered the American and English-
through word of mouth; two books written by the founderspeakingof public
AA, Billawareness
W.; jour-

nalism; and a number of popular films from the 1940s through the early 1960s.5
During this period, alcoholism morphed from a personal problem to a medical
one; it became well established as such by the 1960s. We first start seeing books
on sexual addiction in the 1970s, coinciding with the founding of SlAA, which
held its first regular meeting in Cambridge, Massachusetts, on December 30,
1976. Once the idea had been assimilated that alcoholism might be understood as
a diseasea form of chemical dependence predicated on the proclivity of some
people in the population to be hyper-susceptible to alcohol or other chemicals
then it was possible to entertain the notion that people might be addicted to the
chemicals involved in sexual arousal and satisfaction: endorphins, norepherine,
dopamine, serotonin, and oxytocin. Like alcoholics or drug abusers, sex addicts
might become dependent on particular neurochemicals.
The positing of sex addiction as a disease took part in a larger social trend
during the late twentieth century, which removed the onus of moral judgment
from certain behaviors by redefining them as medical problems. Yet sex addic-
tion does not have the same legitimacy as psychiatric impairments like schizo-
phrenia or manic-depressive disorder or even alcoholism. Because it began
with twelve-step programs, its origin is nonmedical and, in a profound sense,
demotic. Unlike alcoholism, it is not listed in the DSM- TR; it is therefore
IV-
not considered a psychiatric disorder by the medical profession.6 Sex addiction
hovers between a popular interest in obsessive behavior and a clinical suspicion
of an addiction to something as normal as sexuality. Yet after the idea of sexual
addiction permeated the popular press, practitioners began to apply it to their
patients.
The genesis of sexual addiction presents some knotty theoretical problems
for disability studies. The social model of disability depends upon a distinction
between impairment (a physical condition) and disability (the social barriers
that disable people with certain impairments). The notion of impairment gen-
erally rests upon medical diagnosis. If a person has, say, chronic fatigue syn-
drome (cFS) or multiple sclerosis (MS), this means that a medical diagnosis has
been made, which places the person within the protected class in regard to legis-
lation concerning disability. Impairment, then, is not a given; it is conferred
by medical professionals. Moreover, the process by which it is conferred is often
contested. Frequently, people who have cFS, or are in the early stages of MS, have
normal medical tests and no visible signs of disease; they are therefore often
assumed to be malingering or somatizing. Indeed, many medical professionals
still maintain that cFS is not a real illness. Sex addiction is arguably an even

more unstable category. Because it began as a popular movement, it in a sense
poses a populist challenge to the medical elite, who have not yet chosen to in-
clude this disease entity in their official, professional diagnostic handbook. In the
absence of a medical diagnosis, should sexual addiction be permitted to enter the
safe confines of the disability category? If we say no, are we ratifying the medi-
cal professions authority to define disability? This problem raises another ques-
tion: the postpsychiatry movement is challenging the foundational categories of
psychiatry, much as disability activists have challenged similar issues relating to
physical impairment. Members of the psychiatric survivor movement assert that
they, not psychiatrists, are the best authorities on their bodies and minds. If dis-
ability studies refuses to accept a disease entity like sexual addiction because it
is named and defined by the people who have it, would the field be dismissing
the very tenets of the psychiatric survivor movement?
The answers to these questions are far from clear. Moreover, because of its
heterogeneous origin, sex addiction carries various, sometimes conflicting, defi-
nitions. One writer claims that addiction is a psychic state that often predates the
addicts first encounter with his drug and that remains unchanged throughout
the career of his substance abuse (Trachtenberg 28). Others write, the addict
is a person who never learns to come to grips with his world, and who therefore
seeks stability and reassurance through some repeated, ritualized activity. . . . The
true addict progresses into a monomania (Peele and Brodsky 27). The major
organization that formulated sex addiction as a disease is SlAA. Its website con-
tains the following information: Addiction can take many forms, including, but
not limited to, a compulsive need for sex, extreme dependency on one person
(or many), and/or a chronic preoccupation with romance, intrigue, and fantasy.
Sex and love addiction may also take the form of anorexia, a compulsive avoid-
ance of giving or receiving social, sexual, or emotional nourishment. One of
the immediate questions that arises is: can we say that addiction to sex is a valid
form of addiction? No illegal or legal drugs are used. Ostensibly, the addiction
is to ones own biochemistry and predilections. But then why cant we say that
happy people are addicted to serotonin, or that sad people are addicted to the
lack of serotonin? Or why not say that nursing mothers are addicted to oxytocin
or prolactin, or that athletes are endorphin addicts? As one book puts it, addic-
tion has as much to do with love as it does with drugs. Many of us are addicts,
only we dont know it. We turn to each other out of the same needs that drive
some people to drink and others to heroin. And this kind of addiction is just as

self-destructive asand a lot more common thanthose other kinds (Peele
and Brodsky 13). If people are addicts without knowing itare they addicts?
Giddens takes a more sociological approach to neoliberal capitalism and sees
addiction as a function of a society that encourages identity through choice.
Modern societies, he argues, react to discursive control by creating new options
and knowledges. Giddens uses the phrase institutional reflexivity to refer to a
process that creates a society based on endless choices, in which any pattern or
habit can become an addiction (75). Since choice becomes central to neoliberal
consumer society, addiction is defined as the inability to choose. That is, you do
something over and over again because you cant choose, because you are com-
pelled to perform and re-perform, think and rethink. In this way, obsession is not
about choosing what you are doing; it is about the fact that you cant choose to
stop doing it. And the not being able to choose is finally about losing the much-
valued centerpiece of neoliberal possessive individualismthe ability to choose
among a variety of consumer options. Because the addict is unable to choose, he
or she lives an unfulfilled life. According to SlAA, the guilt of prior deeds and
passions or missed opportunities gave way to the deepest, most pervasive guilt of
all: that of having left life unlived, or having turned our backs on the possibility
of fulfilling a meaningful destiny (70). In this case, unfulfilled lays an accu-
mulative metaphorhaving enough to fill oneover the requirement to live a
fulfilled life. Obviously a fulfilled life is one that conforms to all kinds of norms.
A fulfilled sexual addict, by definition, cannot exist.
But how do we define the sex addict as opposed to any other addict? The
projects of Kinsey, Masters and Johnson, and other sex researchers of the 1950s
and 1960s were largely descriptive, not proscriptive or pathologizing. This trend
continued through the 1980s. At the beginning of that decade, researcher John
Money wrote: It hardly needs to be said that there is no fixed standard as to how
often is too often in sex, whether in terms of total orgasmic frequency, mastur-
bation frequency, copulatory frequency with or without orgasm, homosexual
or heterosexual frequency, or number of partners. The range of variations is
wide, from extreme apathy and erotic inertia to a plurality of orgasms on a daily
basis (94). Moneys distanced observation, presented along with the phrase it
hardly needs to be said, reflects the generality of the claim that you cant insist
on a norm for sexual behavior. If you cant have a norm, how can you describe
the point at which normal becomes obsessive, at which sexual activity becomes
addiction?

Moneys neutral, descriptive account of sexual behavior in 1980 contrasts with
the language used to describe sexual addiction in other texts in the years that
followed it. Indeed, the replacement of nonjudgmental analysis with patholi-
gizing moralism is the hallmark of the sexual addiction accounts. Writing in
1988, Peter Trachtenberg defined the Casanova Complex as the compulsive
addiction of males to multiple partners. Far from a distanced and scientific de-
scription of human sexual variation, Trachtenbergs approach, as is common
in the more contemporary literature about sexual addiction, tends toward the
moralistic. Trachtenberg says he interviewed about fifty men, whom he found by
placing classified ads. He wanted to speak to men whose relations with women
were characterized by brevity, instability, and infidelity (18). Of these men, he
writes, Their happiness seemed strained and self-willed. . . . [O]ne encounters
an underlying hunger and impoverishment of spirit and an unconscious view of
women as faceless instruments of pleasure, ego gratification and relief (19). By
calling their condition a compulsion, Trachtenberg emphasizes, I have implied
that Casanovas are sick people (29). The author offers, at the end of his book,
options available to Casanovas who wish to achieve sexual sobriety (21).
Once sexual activity is framed as a disease or addiction, it moves from the
realm of a neutral descriptive narrative to another kind of recuperative narrative.
It becomes, in effect, a disability. How does this happen? One way to think about
this question is to consider briefly the history of Casanova, the figure Trachten-
berg evokes, and see how that history changes from his own time to ours, a move-
ment that parallels the move from descriptive to proscriptive. Reading through
the writings of Giaccomo Casanova, one notices a complete absence of any medi-
cal notion of sexuality. The earliest reference to Casanova in print was written
in 1823, the year the book appeared in German. Countess dAlbany writes: Have
you read, Madame, the Memoires of Casa Nuova? It is a book worse than the
Confessions of Rousseau, but an observer and philosopher can make discover-
ies there not to be made elsewhere. One cannot understand how an old man of
seventy could write such a confession without blushing and without remorse. He
makes me detest both men and women at the same time (qtd. in J. Childs 218).
While this assessment certainly expresses moral concern, it conveys no sense
that Casanova had a medical or a psychological problem. In a letter from 1822,
Heinrich Heine writes that Casanovas autobiography stirs up much interest
here. Of Casanovas work, he writes, I would not recommend it to a woman I
cherish but would to all my male friends. Out of this book there emerges a breath
of sultry Italian sensuality. . . . There is not one line in the book which is in har-

mony with my sentiments but there is also not one line which I did not read with
pleasure (qtd. in J. Childs 285). By 1835 a writer links Casanovas sexuality with
his interest in learning: equally thorough and learned in voluptuousness and sci-
ence, such is the motto I would place under the portrait of this Jean-Jacques who,
without doubt, was the most remarkable figure in the social life of his century.
That same writer sheds possible light on how some viewed Casanovas sexuality,
noting that a questionable mock modesty of our century has rejected his Mem-
oirs with moralizings, and the police have come to the aid of this prudery by for-
bidding in this or that German State, the most remarkable of all books (qtd. in
J. Childs 322).
Before the late nineteenth-century emergence of sexology as a distinct field
of professional knowledge, reactions to experiences such as Casanova describes
might include blushing, pleasure, moralizing, and even police repression. Sex,
however, was not yet subject to notions of normal, abnormal, diseased, or
healthy.7 In Trachtenbergs late twentieth-century account of a Casanova Com-
plex, moralization and medicalization function together; the Casanovas sick-
ness and spiritual impoverishment are inseparable. Popular trade books such
as this, along with self-help manuals, have played a very important role in de-
veloping social concepts of disease in the past century. These books, along with
journalism and other media, disseminate the parameters of disease entities
through the general public so that ordinary people acquire a language for de-
scribing some of the complex and ineffable features of emotional and behavioral
life. Many of these books involve a first-person involvement and often a con-
version experience. So Trachtenberg, along with the anonymous author of the
basic text of Sex and Love Addicts Anonymous Handbook, Caveh Zahedi (who
made the movie I Am a Sex Addict), and Michael Ryan (who wrote Secret Life),
all tell their own stories, ending up with salvation or at least the prospect of cure
through the twelve-step program. There is a strong sense of personal salvation,
gratitude to the process, and a sense of occupying a moral high ground at the
end of these works.
The self-help books often use scientific sources, studies, and surveys, which
they cherry-pick, but mostly rely on composite fictionalized accounts of people
who are usually given first names like Sam or Beth. As one book explains its
method: This is in some ways a personal book. . . . As the book has broadened
in scope, I have developed the theme wherever possible in the form of psycho-
logical vignettes. These are fictional accounts, inspired not so much by clinical
observations as by normal experience. Although fictional, the characters in these

accounts are in a sense familiar to us all (Peele and Brodsky 14). Another writer
laments the absence of psychological studies and research, saying we are aware
that we are jumping ahead of research by describing as clearly as could be what
we have gleaned from our personal and clinical experiences (Mellody viii). Such
books do not operate exclusively in the realm of the factual; they work in the area
of the ideological, the imagined, the narrativized. People become types; behavior
loses any ambiguity and becomes clear and knowable. Race, gender, physical and
cognitive disability, and sexual orientation all disappear behind the universalized
faade of the addiction. Despite a veneer of scientism, there is also a strongly de-
tectable moralizing: addiction, we learn, is a malignant outgrowth, an extreme,
unhealthy manifestation, of normal human inclinations (Peele and Brodsky 16).
There is a link between moralizing in the self-help books and in the twelve-
step programs, which require the acknowledgment of a Higher Power. While
all programs stress that the Higher Power doesnt have to be Godit can be
Nature or the Universe or even the group itselfthe God model comes up in
many of these books, as it does in the conclusion of Pia Mellodys Facing Love
Addiction, when she says, We have found that with the help of a Higher Power,
whom we call God, we can stand the pain of reality (225). God turns up in the
Sex and Love Addicts Anonymous Handbook, where participants are told that a
reliance on God or some other source of power beyond ones own resources
is necessary (SlAA vii). And although the non-God alternative is permitted, the
rest of the handbook simply expresses thoughts like And it is here that true love,
which is of God . . . is found and expressed (SlAA vi). Even poet Michael Ryans
worldly and well-written memoir ends with relief at stopping my most shame-
ful sexual behavior (through the grace of God) (353). And Toni Bentley, former
ballet dancer, details in The Surrender how her obsession with anal sex led her
to find God, a journey that might seem counterintuitive, but ends with her reli-
giosity and the obsessions end. My point here is not that one should or shouldnt
believe in God, but that a quasi-religious and thus moralistic approach seems to
be embedded in the sex-addiction program.
Yet throughout the development of the idea of sexual addiction, there is an
imprecision in explanatory systems. Is the disorder moral or spiritual? A prob-
lem of psychological origin? A chemical addiction to certain neurotransmitters
that are produced during sexual arousal? Such uncertainty pertains not only to
sex addiction but to addiction more broadly. Stanton Peele and Archie Brodsky
claim in 1977 that: Addiction is not a chemical reaction. Addiction is an ex-

perienceone which grows out of an individuals routinized subject response
to something that has special meaning for himsomething, anything, that he
finds so safe and reassuring that he cannot be without it. If we want to come to
terms with addiction, we have to stop blaming drugs and start looking at people
(18). In this account, addiction is expanded away from drugs to food, sex, work,
and such a wide variety of activities that addiction is not an abnormality in our
society. It is not an aberration from the norm; it is itself the norm (Peele and
Brodsky 18). But if it is the norm, can it then be a disability? Or what would it
mean for a disability to be a norm?
In a post-Stonewall era, sexual addiction texts do not characterize gay, les-
bian, or bisexual experiences as abnormal. We need to recall that the whole thrust
of the sexology movement was to include and describe the variety of sexual ex-
perience. In theory at least, promiscuous gay sex doesnt look any different from
promiscuous heterosexual sex. But if generalized gay or lesbian experiences es-
cape pathologization in the sex addiction literature, queerness does not. If queer-
ness is seen as including polyamorousness and other nontraditional notions of
sexuality, then the normative nature of the sexual addiction language steers a
wide arc around such practices. This can best be seen by the 1990s, as the addic-
tion model for sexual behavior was refined with a parallel notion of compul-
sivity. The use of the term sexual compulsivity is intended to bridge the gap
between the nonmedical self-help programs and the practitioners of sex therapy.
Indeed, one professional journal links both terms in its title: Sexual Addiction
and Compulsivity: The Journal of Treatment and Prevention. The term compul-
sivity gets the issue out of the demotic self-help, twelve-step programs where
it began and into the psychiatrists, therapists, and mental-health practitioners
offices.
No doubt partially in response to the rise of managed health care, the need for
diagnosis, and the now ever-present requirement to use standardized diagnoses
developed in the DSM- TR, compulsivity has become a measurable phenome-
IV- was more of a conceptual category. One of the first
non, whereas love addiction
instruments for measuring sexual compulsivity was a scale that could be used,
as the title of one journal article put it, for predicting AidS-risk behavior among
homosexually active men (Kalichman et al.). In this context, the boundaries be-
tween queerness and disability seem porous indeed; its difficult to say whether
sexual compulsivity is a disability or a form of queerness, since both might be
said to involve too much sex, or the wrong kind, with the wrong kind of people.

Furthermore, the disability and queerness that is diagnosed as sexual compul-
sivity must be measured, quantified, and regulated because it is believed to pro-
duce more disability (hiv and AidS).
Yet if in the context of cultural panic about AidS, sexual compulsivity seems
both queer and pathological, in other contexts, the disorder bears an uncanny re-
semblance to normative ideals of heterosexual masculinity (and of heterosexual
feminine desire). The title of a Glamour magazine article in June 2006, drawing
on research that links sexual compulsivity to risk-taking behavior, asks: Is there
a Casanova Gene? According to the article, guys with a lot of the chemical
[dopamine] tend to be spontaneous, risk-taking and highly sexual (Fahner 138).
As genetics develops, we may well see an assertion that there is a gene for sexual
promiscuity. In that case, will there be a medical foundation to sexual addiction?
Interestingly, for Darwin, survival was based on finding the best sexual scenario
for reproduction. In an evolutionary sense, the Casanova gene would be the
desired mutation to help further the progress of the human race, illustrating the
reproductive force of the selfish gene.
Sexology created a science of human sexuality, but there also needed to be a
science, or at least a philosophy, of love in order to develop a notion of obsessive,
addictive, or compulsive sexuality. In the mid-twentieth century, notable books
like Erich Fromms The Art of Loving developed models about what love is and
should be. Love is not a spontaneous feeling, a thing you fall into, according
to Fromm, but it is something that requires discipline, concentration, patience,
faith, and the overcoming of narcissism. It isnt a feeling; it is a practice (92).
Fromm and others developed a notion of the right kind of lovea normativity
of love that was coupled with a hypothetical entity called the healthy couple
or a healthy relationship. Love and sex went together like the proverbial horse
and carriage. Books like Eustace Chessers Love Without Fear: How to Achieve
Sex Happiness in Marriage, published in 1947, equate the happy marriage with
love and with heterosexual normality. Love addiction would lie outside of this
normative bubble.
Self-help books about the problematics of obsessive love often note that a
healthy sexual relationship should be predicated on the idea that a couple accept
limerance as a temporary state and that a long-term relationship will not have the
ardor of a first night or the honeymoon period. The Sex and Love Addicts Anony-
mous Handbook points out that the sex and love addict would come to substitute
the thrill of sexual adventure or intensity of love for the more encompassing sat-
isfactions, founded first and foremost on self-respect, and later realized in family,

career and community (SlAA viii). In this scenario, the thrill of sexuality, the
lure of ecstatic sex between two people, is supposed to cool down to the more
tepid communal, networked satisfactions of career, marriage, and community. In
this scenario, there is no civilization of discontents, no conflict between eros and
psyche. The high-tension electrical charge of sexuality is supposed to run down
to the apparently less distracting and more comforting low-wattage baseline of
the domestic space and the workplace. In much of the literature on sex addic-
tion, what is essentially a neoliberal, bourgeois vision of life, rife with work-ethic
values and utilitarian views of human relations, receives a degree-zero camou-
flage as simply the right way to live.
Codependencea variation on the addiction scenario added in the 1990sis
part of this scheme. It too comes directly out of AA, part of a dawning realiza-
tion that the problem was not solely the addicts but also the family and friends
who constitute a network for the alcoholic. Codependence is like sex addiction,
in that the codependent person is fixated on another person for approval, sus-
tenance, and so on. Thus, Mellody can use the terms interchangeably: Love ad-
diction, therefore, is an addiction that often becomes visible to the codependent
only after some work has been done on the core symptoms of codependence
(7). In Facing Love Addiction, Mellody insists that the Love Addict (her capital-
ization) is a person who is fixated on another: Love Addiction, like other ad-
dictive processes, is an obsessive-compulsive process used to relieve or medicate
intolerable reality. Caught in the throes of withdrawal pains [when the Avoidance
Addictthe other half of the codependency modelpulls away], Love Addicts
start obsessing (27). According to Mellody, love addiction is a gateway addiction
leading to additional addictions: to sex, food, drugs, alcohol, and so on.
Love addiction apparently leads to obsession and compulsionbut it is not
always clear which is the cart and which is the horse. Indeed, the problem of
causation has beset theories of obsession for centuries. In the eighteenth and
nineteenth centuries, as I show in my book Obsession: A History, obsession de-
veloped from doing one thing too much. The disease and etiology were the same:
you did one thing too much, and you ended up obsessed, that is, doing one thing
too much. The addiction scenario, in our own historical moment, is involved in a
similar dance of causality. Why is one person a sex addict and another not? Does
having too much sex make you a sex addict; or do you have too much sex because
you are a sex addict? Until the 1990s, when the brain chemistry model began to
replace a psychodynamic model, sexual addiction was believed to be caused by
childhood abandonment and narcissism. Craig Nakken distills these ideas down

to their most common elements: There are persons who are more susceptible to
addiction. These are persons who dont know how to have healthy relationships
and have been taught not to trust in people. This is mainly because of how they
were treated by others while growing up, and they never learned how to con-
nect (26). Nakken further explains: Addiction is a pathological relationship.
What does this mean? To be pathological is to deviate from a healthy or normal
condition. When someone is described as being ill, we mean that this person
has moved away from what is considered normal. The pathological, therefore,
means abnormal. Consequently, addiction is an abnormal relationship with an
object or event. All objects have a normal, socially acceptable function (10).
This passage makes clear the contemporary modality of addiction speak. There
are obviously normal people, who live natural and healthy lives. Then there are
addicts, who are abnormal and live unhealthy, ill lives. In addition, the world is
itself bound up in this fairly obvious natural path of life, because it is part of a
scenario that is subject to the Higher Power. Nakken explains that with a spiri-
tual Higher Power we learn to perceive and accept a natural order, a natural
flow (22).
The swirl of confusion continues. If addiction is an abnormality, a pathology,
then clearly it is a disability. Given a psychodynamic or a biological or chemical
explanation of addiction, what addicts and society seek is a cure. So this dis-
ability isnt one to be celebrated, or even linked to a political and social model; it
is simply a state of being that requires cure. But cure can only come, in the par-
lance of the twelve-step programs, from a belief in God or a Higher Power and
the willpower that comes from group interaction. The pathology model then
reverts to the most ancient attitude toward disability, the religious one. Medi-
cal conditions require divine intervention linked with personal devotion and
self-discipline. The fugue of explanatory models in this view is disconcerting to
dizzying.
What I want to suggest is that the formation of a disease, in this case sexual
addiction, is at base a social and political process. This is what I would call a bio-
cultural explanation in the sense that it is a result of biology and culture. Certain
behaviors come under disciplinary and moral scrutiny. Aspects of the behavior
are isolated and then compiled into syndromes or disorders, which comprise a
list of possible symptoms. Groups of people, whether doctors, self-help group
members, or larger segments of the public, begin to group these symptoms or
behaviors under the rubric of the disease entity, which comes into being itself
from this very social, biopolitical process. As weve seen in this case with sexual

addiction, a series of categorizations had to come first. In the beginning was the
pinpointing of the consumption of alcohol as a problem. Then the disease of
alcoholism had to come into existence, with its own cure modalities. Along with
this, the notion of addiction had to develop and become accepted, and finally a
range of addictive behaviors had to be described and expanded. Moving from the
more obvious chemical dependencies (and these too are somewhat arbitrary
why opiates, barbiturates, and alcohol, but not caffeine, nicotine, or serotonin?),
a generalization occurs in which behaviors not previously seen as pathological
(work, sex, food) become seen as linked to pathology. After the disease entity
is established with the most egregious cases, a kind of me-too malady adop-
tion occurs, in which lower-frequency or lower-intensity behaviors begin to fall
under the larger rubric. In this expansion, as weve seen with depression, erectile
dysfunction, obsessive-compulsive disorder, situational affective disorder (for-
merly known as shyness), and other disorders, a consumer-driven, corporatist
push casts the net of the disease entity wider, so that people who are merely sad,
recreationally sexual, emotionally needy, or overly neat and orderly see them-
selves as having the disease entity. In synchrony with this expansion, family
members and friends suggest, based on publicity and other rather simplified
conceptualizations of illness, that a person might be in need of medical care or
a twelve-step program. Peer pressure to stop certain kinds of disturbing behav-
iors can be easily cast into being concerned about the person who is displaying
this behavior. This kind of social surveillance is very much what Foucault had in
mind when he described regimes of biopower.
In this scenario, which Im not prepared to defend in this short chapter but
which I merely suggest as a way of thinking of disease, impairment is not merely
acquired but is, in effect, generated by vast social processesthe same social
processes, sometimes, as those that then disable individuals seen as having
particular impairments. The old impairment and disability gap begins to col-
lapse, though, when we consider these complex forces at work in the creation,
deployment, consumption, and proliferation of disease entities and cure ratio-
nales. Particularly in the case of cognitive and affective disorders, our models of
disability need to be rethought. In the rethinking of these models, we will have
to come up against the question of whether lifestyle disorders like sexual addic-
tion are disabilities. In doing so, we might want to move from the individual to
the larger social, cultural, political milieu. Can we say that an individual has
a sexual addiction, or should we say that a society has produced a therapeu-
tic community around addiction? Do we attempt to provide accommodation to

those with sexual disorders (including impotence along with nymphomania)? Or
would it be more logical to accommodate the larger world to the behaviors of its
members? There is no easy answer to this problematic, and we might have to end
up rethinking what we mean by disability and accommodation by considering
the errant categories of difference, the ones that dont fit so easily into our ideas
about the social model.
noteS
This chapter was previously published as chapter 6, Obsessive Sex and Love, in Ob-
session: A History, by Lennard J. Davis (Chicago: University of Chicago Press, 2008),
16181.
1. See Foucault, History; DEmilio and Freedman; Giddens; and Laqueur.
2. One of the main publishers of such material in the early twentieth century was
the Eugenics Press.
3. See Cooper for a clinical analysis of the role of the Internet in shaping contem-
porary sexual behavior.
4. For a detailed history of this subject, see Boon.
5. These films include Lost Weekend (1945), Come Fill the Cup (1951), Come Back
Little Sheba (1952), Something to Live For (1952), Ill Cry Tomorrow (1955), The Voice in
the Mirror (1958), and Days of Wine and Roses (1962).
6. It may well be that the DSM- will list sexual addiction along with addictions to
shopping, work, and so on. There is V an active debate now going on about whether one
can be addicted to behaviors rather than substances.
7. Masturbation was perhaps an exception. It was first critiqued in the eighteenth
century, but it wasnt until Tissots book in the nineteenth century that it came to be
seen as a disease entity. Its existence as a disease was predicated on the fact that it wasnt
sexual intercourse, which was seen as healthful, while chastity was regarded as a prob-
lem. See Laqueur for a much more detailed account.

16
alison kaFeR
deSire and diSguSt

My ambivalent adventures in devoteeism
Dear Alison,
...
Because of an overall almost total void of amputee women, when one
does show herself, it is a major event. For instance (and please dont take
this personally), if I were to see you unexpectedly, walking down the street,
chances are good that it would send me into a state just short of shock
the adrenalin would start to flow, the heart rate would quicken, the palms
would start to sweat, etc. This really happens! And, I would, in relishing
the moment, do everything unobtRuSively possible to savor it.
In the past, Ive turned my car around . . . to have another look. Ive
followed someone around in a store/shopping center (at a safe and non-
threatening distance) for a few minutes, stealing quick glimpses now and
then. . . .
I just dont want you or any of your disabled sisters to perceive people
like me, who have a genuine interest in you, as well as your predicament,
shall we say, and who could provide the love and care you deserve, as a
bunch of wolves moving in for the kill. Nothing could be further from the
truth! To win the love and trust of a disabled lady by meeting her needs
and providing for her in every way possible . . . would be the ultimate!
...
Give us a chance, and youll reap the benefits in SPAdeS!
A friend and admirer,
Steve
Steve and I have never met; our one-sided relationship consists solely of this
e-mail and another like it a week earlier.1 Lengthy descriptions of one mans
sexual self-understanding, both messages offer a personal account of devotee-
ism, a sexual attraction to disabled people, often amputees. For Steve, this desire
for amputees ebbs and floods, . . . but it iS AlwAyS theRe, and he carefully ex-
plains the nature of this attraction. Noting that devotees would infinitely rather
go out with an amputee of average looks and build than a gorgeous 4-limbed
woman, Steve encourages me to think kindly of devotees because they cant
get enough of [my] beautiful looks. For Steve, my beautiful looks are the re-
sult of my two above-the-knee amputations; the fact that he knows nothing else
about my appearance, or my life in general, does nothing to dampen his desire.
It is a desire that others apparently share: although Steve was among the most
articulate and thorough defenders of devoteeism to enter my inbox, he was not
alone; over the course of a few years, beginning in September 2000, several other
devotees wrote to me about their desire for bodies like mine.2 Reading those
e-mails, I did exactly what Steve had politely asked me not to do: I took them
personally. Who were these men tracing me through the Internet? Was I one of
the women they were following surreptitiously? I became increasingly suspicious
of strangers, particularly those interested in learning about my disabilities.
My suspicions were shared, and expanded upon, by my friends and family.
There are people called devotees, I would explain, who are sexually attracted
to amputees. Their responses were immediate and unequivocal: Ewww, thats
weird. Whats wrong with those people? Although I confess to following this
train of thought myself, wondering what was wrong with devotees, hearing it
expressed with such consistency troubled me. What were my friends and family
finding reprehensiblethe surreptitiousness of devotee behavior or the desire
for disabled bodies? The fact that many of them condemned devoteeism im-
mediately, hearing only about the existence of the attraction and not its mani-
festations, led me to worry that what troubled them was the very casting of dis-
abled bodies as inherently attractive. And if so, where did that leave me? Did my
332 Alison Kafer

friends and family unconsciously find my body so freakish that anyone attracted
to it was immediately suspect? Did I share their derisive attitudes? What would it
say about my self-image if I dismissed as disgusting and suspicious anyone who
desired me? On the other hand, what would it say about my self-image if I were
so desperate for sexual recognition that I accepted the kind of behavior men-
tioned in Steves e-mail? Were these two choices my only options? Was devotee
desire the only desire available to me?
Like many people, I initially discovered devoteeism when doing an online
search for amputee.3 It was 1996, fourteen months after my injuries, and these
websites seemed to confirm my worst fears: my new body was apparently dis-
gusting to all but a select fewthe devoteesand even they felt the need to
hide their feelings behind pseudonyms and nicknames.4 Their secrecy seemed
evidence that there was something wrong and shameful about an attraction to
bodies like mine. Otherwise, why not be out about their desires? After reading
through several websites, I quickly shut down my computer, studiously avoiding
any such pages in the future.
A few years later, in 1999, I returned to the question of devoteeismthis time
with a slightly different lens. I wanted to examine why some women actively en-
gaged in amputee-devotee communities, what benefits they derived from their
involvement, and how they understood themselves in relation to devotees. What
were they finding in amputee-devotee communities that I had missed? What
motivated their involvement in something that many other disabled people had
condemned as exploitative and ableist? My interest was partly a result of frustra-
tion with existing approaches to the phenomenon. Until very recently, medical
journals contained the only analyses of devoteeism, analyses that relied heavily
on the notion that a desire for disabled women is a pathological trait requiring
therapeutic intervention.5 What are the cultural assumptions that ground such
characterizations? If we cast devotees as pathological, then what are we saying
about the desirability of disabled women? What might the stories of disabled
women contribute to these discourses of inappropriate desire?
What I found in the stories of amputees involved in devoteeism were tales
of renewed self-assurance and empowerment. Women who had felt profound
shame about their bodies reported significant gains in their self-confidence
after discovering devotees. Such changes in self-perception then led to dramatic
changes in behavior: one woman reported no longer feeling too embarrassed
to leave her house, while another abandoned her practice of hiding her stump
underneath baggy clothing and wraps.6 Hearing these stories, I realized I could
Desire and Disgust 333

no longer simply dismiss devoteeism. In 2000 I wrote Amputated Desire, Resis-
tant Desire as a way of thinking through these issues. This piece, although it con-
tained ambivalences, was largely an argument for attending to the experiences
of women in amputee-devotee communities; the essay challenged the assertion
that a desire for disabled bodies is, in itself, a marker of pathology.
Once that piece went online, with my e-mail address attached, I began to re-
ceive e-mails much like the one with which I began this chapter. Devotees wrote
to describe devoteeism, to detail their desires, and even to request dates with me
and other amputees. As my inbox filled with messages from devotees, my initial
discomfort with devoteeism returned. Although the e-mails were intended to
flatter me, their constant refrain that devotees were the only people capable of de-
siring bodies like mine was disconcerting. This repetition, coupled with frequent
accounts of devotees stalking amputees, made me increasingly uncomfortable
about continuing any involvement in devoteeism, even as an outside observer.
Indeed, part of my discomfort stemmed from the fact that I was finding it in-
creasingly difficult to locate myself outside of devoteeism. My inbox regularly
turned up e-mails from strangers discussing my body with a disconcerting inti-
macy, an intimacy borne not of explicit descriptions of sex but of explicit reflec-
tions on my appearance and others (alleged) reactions to it. Devotees discussed
my stumps with a troubling familiarity, even possessiveness, as if their (allegedly)
unique desire granted them some kind of claim over my body. Whether I wanted
it or not, I was being written into devoteeism through these e-mails. By the end
of 2001, I decided to abandon this research. I could not bear the way this work
was making me feel about my body, as if my stumps belonged more to the devo-
tees in cyberspace than they did to me.
My discomfort remained coupled, however, with feelings of necessity. Ampu-
tees continue to wrestle with the complexities of devoteeism, and there is scant
research addressing the topic from feminist or queer cultural studies perspec-
tives.7 Thus, years later, I return to the topic yet again, this time to trace the root
of my continued ambivalence. Although I remain deeply troubled by my inter-
actions with devotees, I have encountered too many stories of female ampu-
tees finding pleasure and opportunity in devotee communities to accept such
communities as exclusively exploitative. Moreover, as someone who is routinely
met with hostile stares because of the oddness of my body, I cant help but be
intrigued by the notion of finding eroticism in bodies typically marked as un-
desirable. The form this eroticism takes in devoteeism, however, worries me, and
I cannot shake my uneasiness about the phenomenon. Over ten years after my
334 Alison Kafer

first exposure to devoteeism, what is it about the devotees desire that continues
to trouble me? Why do I remain so ambivalent?
In this chapter, I attempt to answer that question, arguing that the rhetoric
of devoteeism relies as heavily on disgust for disabled bodies as it does desire.
Devotees typically define themselves not simply as people sexually attracted to
amputees but as the only people sexually attracted to amputees. Unlike every-
one else, they claim, we find you not disgusting but desirable. In so doing, they
establish the groundwork for a devotee exceptionalism, according to which only
devotees are capable of desiring amputees. I begin by tracing the logic of desire
and disgust that pervades devoteeism, arguing that devotees descriptions of
their attraction often perpetuate the ableist assumption that disabled bodies are
properly objects of disgust. In the second half of this chapter, I examine my own
entanglement in this logic of desire and disgust, reflecting on the assumptions,
fears, and desires that drive my research. Part of this self-reflection involves a
turn to queercrip relationships, specifically the writings of lovers Eli Clare and
Samuel Lurie, in the hope of articulating other models of desiring disability that
are not reliant on fetishistic representations or the binary logic of desire/disgust.
Demographic analyses of devotees are rare and reliant on small sample sizes,
but they suggest that devotees in the United States tend to be white, middle-
to upper-middle class, well-educated men between the ages of twenty-five and
sixty-five; anecdotal evidence provides the same profile.8 Most devotees are non-
disabled men interested in disabled women, but, judging from the numerous
websites catering to gay male devotees, there seems also to be a significant popu-
lation of gay men involved in the attraction.9 I focus here exclusively on hetero-
sexual male devotees, nondisabled men attracted to disabled women, for reasons
that will become clearer below.
Throughout the chapter, I train my attention on devotee discourses: web-
sites produced by and for devotees, e-mails and conversations with self-identified
devotees and amputees, and other community-generated texts. Concentrating
on this material allows me to discuss devotee exceptionalism and its logic of
desire and disgust without necessarily condemning any individual devotees at-
traction to amputees. As someone whose own desires are too often cast as de-
viantthe sexualities of disabled people have long been rendered inappropriate,
and queer sexualities continue to be derided as immoralI am wary of preemp-
tively dismissing anothers desire as in need of correction. Rather, my goal is to
highlight the dense undercurrents of disgust found in devotee discourse. How is
devoteeism represented and constructed by people who identify with the attrac-

tion? What cultural assumptions undergird such constructions, and what are
their effects?
deSire and diSguSt: unPaCking tHe logiC of devoteeiSm
According to OverGround, a devotee website, a devotee is a person, male, female,

straight, or gay, who is sexually and emotionally attracted to people . . . who have
a specific disability, and whose reaction on encountering such a person is mas-
sive and overwhelming (Child and King, OverGrounds Manifesto par. 1). This
kind of reaction to disabled bodies is assumed to be limited to devotees; devotee
discourses typically insist that amputees are attractive only to devotees. J., one of
the most frequent contributors to OverGround, puts it bluntly: We know were
unusual, but your physical alteration doesnt disgust us. So you have a stump . . . ,
we dont find it disgusting. . . . Of all the people you meet, we are the ones who
will never ever say, Apart from that shes very attractive (Devotees par. 10).
As evidenced in J.s remarks, the interplay of desire and disgust plays an inte-
gral role in devotee logic. Within this framework, the site of an amputation can
never be neutral: it is always the determining aesthetic factor of an amputee.
Depending on ones perspectivenamely, whether one is a devoteean ampu-
tation is charged either with desire or disgust.10 According to this logic, the key
difference between a devotee and a non-devotee is the value afforded an ampu-
tation: devotees bestow attractiveness and desirability upon it; non-devotees are
disgusted by it. But both are assumed to cast the presence or absence of an ampu-
tation as the determining factor in a womans sexual attractiveness. To desire her
is to find her attractive solely on the basis of her amputation, and thus to be a
devotee. Anyone who does not identify as a devotee is, by definition, a person dis-
gusted by amputees. Within this logic, there is no position outside of the desire/
disgust binary.
Once amputation is cast as the sole marker of attractiveness, then devotees
become the only people capable of feeling that attraction. Devotee discourses
constantly remind amputees that no one else will ever love all of you, the whole
woman because, for devotees, the amputation is primary in constituting who
the whole woman is. In the logic of devoteeism, amputee becomes a womans
primary identity, an identity that ostensibly elicits disgust from all non-devotees.
Indeed, non-devotees, as constructed within devoteeism, are incapable of feel-
ing anything but disgust toward an amputation. Bette Hagglund, an amputee
who founded the amputee-devotee social network Fascination, recommends
336 Alison Kafer

that amputees avoid relationships with non-devotee men for this very reason.
It may be better, she suggests, to get romantic with someone who is attracted
to you without reservation and with full acceptance of your physical limitations
(Fascination conclusion, par. 1). These qualities, presumably, only devotees can
This construction of devoteeism places the partners of amputees at risk of

provide.
misrecognition. If my lover desires me, then she must be a devotee, even if she
has never understood herself as such. But if she disavows devoteeism, refusing
to ground our relationship on my status as an amputee, then her very desire for
me is dismissed as inadequate. Despite any claims to the contrary, her refusal to
identify as a devotee is cast as a rejection of my disability. According to the ex-
ceptionalist logic of desire and disgust, to love an amputee is to be a devotee; to
refuse such an appellation is to love an amputee only partially, ashamedly, re-
luctantly.11
Within this framework, self-loathing is seen as the only reason an amputee
would refuse a relationship with a devotee. As one devotee explained to me, Ive
found that its the amp ladies who dont have confidence in themselves who are
uncomfortable with the idea of devotees. They dont like themselves and they
think there must be something wrong with someone who likes them.12 J. takes
this position one step further, arguing that women who reject devotees are so
disgusted by their own disabilities that they need partners who share their re-
vulsion. He writes on the website OverGround: Some people who are physically
impaired feel ashamed of their impaired bodies. . . . Despising themselves, they
will tend to despise those who find them attractive, and will value the attentions
only of those who feel an equal disgust (Twins par. 8).
This logic casts sexual desirability as the only real problem facing disabled
women; issues such as unemployment and underemployment, social marginal-
ization, poverty, discrimination, and inaccessibility rarely appear in devotee dis-
courses. In an OverGround interview with W. and K., a devotee-amputee couple,
J. repeatedly asks K. about her experiences in rehab. His primary focus is the
issue of attractiveness: Were you concerned about losing personal attractive-
ness . . . ? Did you feel that your personal attractiveness was severely reduced
by your amputation? (W. and K.). K.s answers are telling. Each time J. poses
this kind of question, she explains that she had more pressing concerns: As you
know I had other problems . . . and at that time you dont care much about [your
attractiveness]. We were kept quite busy all day so my aim was learning to walk
again. When J. asks about the loss of attractiveness yet again, she chides, as

you might remember this was secondary to me. I tried hard to walk again, and
to work again. That was my main focus.13 Rather than pursuing these issues,
J. turns the conversation to K.s feelings about devotee desire, suggesting that
within the logic of devoteeism, desire and disgust are the only lenses through
which to view disability.
LeRoy Nattress draws on this closed logic in his call for further research on
devoteeism. He suggests that more and better information on the attraction
will eventually lead to increased awareness and reasoned acceptance of de-
voteeism. Amputees will learn to recognize their unique attractiveness to some
men and will thus be helped to develop to [their] fullest potential, based not on
the expectations of society, but on [their] choices and abilities (4). But can the
dating obstacles faced by disabled women best be addressed through increased
acceptance of, and dependence upon, devotees? And, more importantly, are such
obstacles the only hindrances to womens full development? According to the
devotee logic of desire and disgust, the answer to both of these questions is a re-
sounding yes.
It is certainly true that the impact of an amputation or other impairment on a
womans social life can be staggering. Many feminist and queer disability studies
scholars have focused their research on sex and sexuality among people with
disabilities: some have concentrated on issues of representation; others have ex-
plored political, economic, attitudinal, and architectural barriers; and still others
have examined the effects of these histories and disabled peoples responses to
them.14 What distinguishes this work from Nattresss position is that it contex-
tualizes these dating obstacles within a larger analysis of ableism and politi-
cal oppression, recognizing that sexual marginalization is deeply connected to
political and social marginalization.
In the devotee worldview, in contrast, amputees struggle because they hate
themselves and lack suitable lovers, not because they live in a society structured
around the needs of the nondisabled. Nattress, J., and others suggest that all an
amputee needs to flourish is self-acceptance, a self-acceptance that can best come
from a relationship with a devotee. By discussing an amputees well-being only in
terms of physical attractiveness and romantic relationships, devotee discourses
present disability as an individual problem. In so doing, they perpetuate one of
the most entrenched assumptions of an ableist culture: that disability is a prob-
lem to be addressed only on an individual or familial level, not a social, political,
or legal one. And within the closed logic of desire and disgust, it is a problem
338 Alison Kafer

that can be addressed satisfactorily only through participation in devoteeism;
anything else is a recipe for self-loathing, denial, and inadequate relationships.
Perhaps most disturbing about the closed logic of desire and disgust is the
way it serves to excuse exploitative behavior. Because devoteeism is presented
as an amputees only path out of disgust, practices that might otherwise be seen
as threatening are cast as harmless, even beneficial. For example, many of the
essays featured in OverGround describe individual devotees encounters with
amputee women. Often called sightings, these stories are collected and shared
among devotees, and they occasionally note the general location where a spe-
cific amputee has been spotted. In Sightings, for example, John mentions that
a petite blond with a left bk [below-the-knee amputation] can often be found in
a particular neighborhood shopping district (par. 11). R. Amy Elman notes that
Amputee Times, another devotee publication, explicitly urges its readers to report
on the whereabouts of amputee women; one issue calls for a national (or inter-
national) register of attractive amputees. This means that readers must report
their sightings and the names and addresses of women they know about (qtd.
in Elman 26667). Records of such sightings are popular because many men
neither know any amputees nor have regular exposure to them. Reading about
the sightings of other devotees not only offers them the vicarious pleasure of an
amputee experience but also may guide them toward a sighting of their own.
These encounters are often as much followingsif not stalkingsas
sightings. Steves e-mail, with which I introduced this chapter, provides an ex-
cellent example of this expansion: [I]f I were to see you unexpectedly, walking
down the street, . . . I would, in relishing the moment, do everything unobtRu-
Sively possible to savor it, including trailing at a safe distance. Later in the
e-mail, Steve bemoans the nut cases and the dangerous ones who give a bad
name and reputation to the devotee community by failing to be as cautious as
he is. Quick to distance himself from those other devotees who inconsiderately
frighten amputees by following too closely or too overtly, he positions his behav-
ior as harmless, even flattering. As Steves disavowal suggests, the complaints of
unhappy amputees have not gone unnoticed by devotees, and many have been
quite explicit in their condemnation of abusive behavior.15 The problem, how-
ever, is ascertaining which kinds of behaviors constitute harassment; as illus-
trated by Steves e-mail, many devotees do not consider tracking women to be
harassment if it occurs at a safe distance.
In his dissertation about devoteeism, Nattress offers a list of common strategies

for meeting amputees, including: following an amputee in order to photograph
her and learn about her life; participating in organizations that serve amputees,
such as shoe exchange or support groups; corresponding with a female amputee
via e-mail, often pretending to be a female amputee oneself; and creating detailed
records of amputee sightings (1819).16 As this list suggests, taking surreptitious
photographs, sharing stories about amputee sightings, secretly following women,
and lying about ones identity are seen not as harassment but as acceptable be-
havior, presumably because such manifestations of desire are expected to be a
welcome respite from the disgust an amputee typically experiences. The pres-
ence of such activities on this listas well as the very existence of such a list in
a dissertation by an out devoteesuggests that these behaviors are expected
and accepted within devoteeism. Admittedly, most devotees acknowledge that if
taken to extremes, these acts can be considered abusive. At the same time, they
are quick to insist that such harassment is less the fault of the devotee and more
the fault of an intolerant society that forces devotees to keep their desires hidden.
Thus, according to this framework, the way to eliminate such harassment is to
increase awareness about devoteeism. Once men are more comfortable making
their desires public, they will no longer pursue amputee women in such clandes-
tine ways. This assumption may indeed be true; with greater social acceptance,
many devotees may change their secretive behavior. The problem with this posi-
tion, however, is that devotees are absolved of any culpability in sexual harass-
ment. If disabled women would accept devotees, the logic goes, then devotees
would no longer need to lurk in support groups or secretly photograph them.
The OverGround contributor J. is quite explicit in attributing the responsibility
for ending harassment to amputees. Once you [amputees] put behind you the
prejudice that . . . devotees are disgusting creatures, J. writes, you can under-
stand why [they behave the way they do]. . . . And if youre friendly perhaps they
will stop lurking and behave better (Why Devotees par. 8). Interestingly, J. em-
ploys the language of disgusttypically used to describe the way non-devotees
feel about amputeesto talk about devotees. In so doing, he accomplishes two
things: first, he constructs a bond between amputees and devotees on the basis
of their shared rejection by non-devotee culture as disgusting; second, he per-
petuates the opposition of disgust and desire common to the logic of devoteeism,
assuming that once devotees are no longer seen as disgusting, they will be seen
as desirable.
Note that the disgust aimed toward devotees is assumed to be temporary;
once society develops a greater understanding of devoteeism, it will no longer
340 Alison Kafer

cast the phenomenon as disgusting or pathological.17 Such optimism regarding
the possibility of attitudinal change reveals a striking double standard consid-
ering devotees pessimism regarding amputees. The disgust that non-devotees
feel toward amputees is portrayed not as something that can be alleviated by in-
creased awareness or social change but as something immutable, even natural.
Changes in social practices and beliefs affect amputees only insofar as they alter
the behavior of devotees, alleviating them of the need to pursue their desires
undercover; non-devotee disgust toward amputees, on the other hand, is appar-
ently so profound and far-reaching that it cannot be overcome.
Casting harassment as innocent, something devotees do only out of unre-
quited desire, completely ignores the ways in which such acts can disempower
women. Some amputees express reluctance to see their prosthetists, whom they
fear may be closet devotees getting secret thrills.18 Other amputees have tried,
without success, to ban devotees from amputee-oriented activities and organi-
zations (such as the Amputee Coalition of America) in an attempt to eliminate
devotee harassment.19 For many women, organizations that could serve as valu-
able resource centers have become sites of potential exploitation.
Months after attending an amputee support group in 1997, I learned that the
convener of the group was a devotee, and that he had given my name and physi-
cal description to other devotees. I discovered these facts when I met someone
who already knew me through the organizer; my one-time attendance at the
support group had apparently been enough to introduce me to an entire net-
work of devotees. I felt exposed, vulnerable, and betrayed; since then, I have
been wary of unknowingly sharing my stories with devotees. This wariness has,
in turn, affected my encounters with amputees. Female amputees occasionally
send me e-mail, asking me how I have adjusted to life as an amputee, what my
daily routine is like, and what advice I would give them about devotees. I have
yet to respond to a single one of these e-mails. I wish I could say that my femi-
nist desire to support disabled women compels me to respond, but my sense of
self-protectionjustified or nottriumphs every time. After my support group
experience, and after hearing numerous stories of devotees masquerading as
amputees online in order to ask exactly these kinds of questions, I am too suspi-
cious to reply with sincerity to a stranger. I am painfully aware that if these are
real amputees writing me, then my cynical silence may appear as cruel indiffer-
ence. In my lack of engagement, I may be cutting myself off from potentially
productive relationships with other amputees. Even so, the risks of replying to
these e-mails feel too great. Simply knowing about common practices of devotee

subterfuge places me in what seems like an untenable situation: open myself to
potential exploitation or close myself to community.
Given experiences such as the ones I have described, it is not surprising that
devoteeism elicits suspicion from many disabled women. This suspicion is not
based in self-loathing, as some devotees claim, but in a rejection of the desire
and disgust dynamic that pervades devotee discourse. That is, the ambivalence
of devotees own desire elicits such negative reactions. Disabled women under-
stand how devotee exceptionalismwe are the only ones who could ever love
youperpetuates ableist assumptions about their presumed undesirability; it
leaves unchallenged the notion that amputees are properly objects of disgust.
Moreover, disabled women recognize the ways in which this exceptionalism is
then used to excuse, if not to produce, exploitative and potentially dangerous
behaviors: Im the only one not disgusted by you, so you should welcome my
attention, whatever its form.
deSiring diSability: my gordian knot
I began this chapter by reflecting on my ambivalence about devoteeism and

devotee-oriented research, detailing my trepidation about this topic. To depict
this work as fraught with misgivings is to tell only part of the story, however, for
desire factors into my experiences as well. I have not only had the intellectual
pleasure of making connections among different texts and histories, I have also
experienced the much more visceral pleasure of exposure to amputee bodies,
bodies similar to my own. Analyzing devoteeism has exposed me to a world I
otherwise would never have known existed, and I cant pretend to know the full
effects of this encounter on my sense of self. Through this research, I have seen
dozens of pictures of amputee women on the Internet. For someone who rarely
sees a body resembling her own in other media, such an experience has been
profound.
Analyses of devoteeism tend to overlook the access amputees gain to other
disabled women through their involvement in amputee-devotee communities.
Typing amputee into an Internet search engine brings up more sites about
devoteeism than anything else; women who have no other connection to dis-
abled people or disability organizations, and who are looking online for support
and community, may very well find it on these amputee-devotee sites. While
the AScotworld website is focused primarily on hosting amputee-devotee chats
and selling photographs of amputees to devotees, the site often features infor-
342 Alison Kafer

mation on shoe-exchange groups and health care, serving as a support network
for amputees. Similarly, although the primary goal of an AScotworld confer-
ence might be to introduce amputees to devotees, amputees will likely spend at
least part of the weekend socializing with other women. Through this virtual and
physical community, a new amputee might meet other disabled women who can
serve as powerful mentors for her, modeling how to adjust to life with a disability.
This kind of mentoring may prove to be particularly important when it comes
to sexuality, as studies suggest that a lack of role models dramatically affects the
sexuality of disabled women. For many women, particularly those who become
disabled later in life, it is difficult to learn to incorporate wheelchairs, prosthetics,
scars, and stumps into their ideas of a sexy experience.20 The photographs and
videos of female amputees circulating throughout amputee-devotee communi-
ties might offer disabled women a powerful resource for integrating sexuality and
disability. Devotee websites might be the only places where an amputee can easily
find images of women who look like her, images of women being sexy while
seated in a wheelchair, leaning on a cane, or donning a prosthetic. Indeed, pros-
thetics are often cast as more erotic than medical on these websites, a radical shift
in meaning that could encourage amputees to incorporate medical equipment
such as wheelchairs, canes, and prosthetics into sex play.21 Moreover, they might
begin to recognize amputated bodies themselves as sources of pleasure. K. tells
OverGround that she enjoys looking at the pictures of other amputees because
its interesting to see how other amputee women look (J., W. and K.).
Sometimes, when I get dressed, I think about these women who insist upon
the sexiness of their stumps. Over the years, I have become increasingly comfort-
able exposing the burn scars on my arms and back, and I like to flaunt my wide,
wheelchair-pushing shoulders, but I still carefully conceal the ends of my stumps
underneath skirts and shorts. What lessons could I learn from these women fea-
tured on the Internet? What lessons have I already absorbed from them? Think-
ing about my body while thinking about their bodies, and their relations to their
bodies, is itself a kind of desire.
This pleasuremy pleasurein both the sight and site of female disabled
bodies raises difficult questions about my own entanglement in ableism and
objectification. How am I objectifying the bodies of amputees in my quest for
images that reflect my existence?22 How has discovering their photographs trans-
formed the way I live in the world? Is my own empowerment a vicarious result
of these womens participation in devoteeism? How does my desirefor sexual
recognition, for identification, for communityrely on networks established to

serve devotee desire? What are the effects of my research on these womens lives,
desires, bodies? What, if anything, do I owe them for the many pleasures I re-
ceive? My pleasure in seeing these bodies does not exist apart from power rela-
tions.
Nor does yours in reading this chapter. As an amputee, you may recognize
yourself in my ambivalence; as a devotee, you have experienced an increase in
your visibility; as a nondisabled, non-devotee, this exposure to devoteeism may
have affirmed your physical and sexual normality. Reading about amputees and
devotees may bring the pleasure of recognizing that you are not like them, that
you are not other, thereby buttressing your own ableist privilege in a nondis-
abled world. Rather than being trapped between the two poles of desire and dis-
gust, nondisabled non-devotees are the unmarked norm within the framework
of devoteeism: those whose bodies do not disgust, those whose desires require
no justification.
Amputee, devotee, nondisabled non-devotee: even these designations are too
simple, too narrow. What about the disabled person who isnt an amputeehow
might other disabled people locate themselves in this logic?23 What about the
nondisabled non-devotee whose lover is disabled? Or what about a relationship
between two amputees: one disabled body finding pleasure in another? Or, for
that matter, an amputee discovering pleasure in her own body, incorporating
her stump or stumps into her own sexual fantasies and desires? For me to ignore
these possibilities would be to accept the devotee logic that only devotees can
desire amputees; it would be to perpetuate the ableist notion that desiring dis-
ability can always and only be pathological.
The desire and disgust dynamic is hard to escape, however, as it is articulated
within an ableist culture in which disability is used to justify social, economic,
and political inequalities. In this context, devoteeism is like a Gordian knot: the
more I attempt to unravel the strands of desire and disgust, the tighter the pieces
hold together. This complexity, this tangle of desires and motives, is overwhelm-
ing, as illustrated by an encounter I had at the Oakland airport. Waiting outside
baggage claim for my ride, I was approached by a well-dressed man in his thirties.
After saying hello, he commented on my smile and asked me for my name and
number: Maybe we could go out for a drink sometime. Caught off guard, I said
something about not living in the area. As he continued to make small talk, it
suddenly crossed my mind that this man might be a devotee. I could feel myself
immediately shutting down, wary of telling this possible devotee anything about
myself. I gave vague answers to his questions and explained that I was involved
344 Alison Kafer

with someone else. Sensing my discomfort, he apologized and quickly walked
away.
After he left, I began to question my assumption that he was a devotee. At
that moment, I realized how implicated I was in the logic of devoteeism. I had
somehow managed not to hear his praise of my smile and my self-confidence,
assuming that it had to be my amputationsand only my amputationsthat
attracted him. In hindsight, this reaction seems like such a loss, not of a date
(many women, I imagine, would hesitate before giving a stranger at the airport
their names or phone numbers) but of something more profound: an awareness
of myself as a sexual being, a recognition of my desirability. How sad that I was
unable simply to feel flattered in his offer, to feel pleasure in this mans desire.
How disconcerting that I was so quick to buy into the ableist assumption that
my impairments eclipse all other aspects of my life. Do I subscribe to the notion
of devotee exceptionalism, the idea that only devotees can find bodies like mine
desirable? I want to say no, but my reaction to this man suggests otherwise.
The Gordian knot pulls tighter: assume for the moment that my reaction was
correct, that this man was a devotee. Would it have been wrong for him to have
been drawn more to the shape of my stumps than the curve of my smile? Is one
desire, one attraction, inherently better than the other? Is there something wrong
with finding it sexy the way my skirt skims the edge of my stumps, or the way
my stumps shift when I push my handrims? Is it pathological to fantasize about
moving ones hands across the ends of my stumps, or to desire that more than
the feel of my breasts? To be clear, Im not suggesting that I was wrong to be wary
of this stranger, especially given my experiences with devotees. But I do want to
acknowledge the ways in which this encounter has forced me to recognize my
discomfort with seeing my stumps as sites of desire. Am I wary of such desire
because of the ableist dimensions of devotee rhetoric, because of internalized
shame about my body, or because of an assumption that desiring disability can
only be pathological?
The questions continue, pulling the knot still tighter: why have I so consis-
tently focused my research on heterosexual male devotees? Is it simply that these
are the devotees I have encountered, or am I trying to insure that the image I
associate with devotee bears no resemblance to the image of my female lover,
no similarities to my queer communities? And if so, what or whom am I trying to
protect? Would I have to alter my definitions of devoteeism if the term suddenly
had to include my lover? Am I so reluctant to situate myself within devoteeism
that I have drawn artificial boundaries around my research? Even more trou-

bling, has my attention to heterosexual amputee-devotee relations been a way to
distance myself from the amputees in these communities, a way to reassure my-
self that I am not like them? Has my focus on heterosexual devotees allowed me
to ignore my own unwillingness to accept my amputations as sites of desire?
Conversely, how much of my wariness of devoteeism stems from the relent-
less sexism and heteronormativity of devotee discourses? If devotees were not
so insistent on describing women as ladies, or so certain that all of disabled
womens problems could be solved by a good man, would I be more accepting
of their position? And would I be more open to devotees if they seemed more
queer, more open to other deviant desires?24
I have no easy answers to any of these questions.
It is this lack of easy answers that leads many disabled people to share in my
ambivalence about devoteeism. We are reluctant to condemn the phenomenon,
cognizant of the implications of condemning people who find disability attrac-
tive. Few of us want to deny the experiences of those disabled women who have
found the attraction to be life affirming and empowering. Simultaneously, how-
ever, many of us feel a lingering sense of discomfort with devoteeism, as we are
equally cognizant of the implications of devotee exceptionalism. People with
disabilities are not eager to endorse the assumption that disabled bodies are in-
herently disgusting to all but a select few, or that abusive expressions of desire
are better than no expressions of desire. These complexities have everything to
do with the seeming monopoly devotees hold over representations of sex and
disability. For an amputee like myself, almost the only place I can find images
of bodies like mine is on devotee websites. To find traces of desire, I must wade
through narratives of disgust, and that is what makes devoteeism so troubling.
But I continue to wrestle with these complexities because I continue to find
the promise of desiring disability compelling. As I have argued here, current con-
structions of devoteeism are too wrapped up in exceptionalist logic, fetishistic
reductions, and exploitative practices to meet this promise; devotee discourses
too often cast disabled bodies as disgusting, accepting ableist rhetoric about the
asexuality of disabled women rather than resisting it. Instead, I want to imagine
a sexuality that is rich and robust not in spite of impairment, and not fetishisti-
cally because of impairment, but in relationship to it. How have disabled people
crafted sexual identities and practices that take our impairments into account,
not in order to overcome them, but to capitalize on them? How might impair-
ments enhance sexual encounters, opening up new possibilities and experiences?
How might the absence of an arm or a leg make maneuvering easier? How might
346 Alison Kafer

it enable new positions or closer touches or longer embraces? How can impair-
ment be recognized in our discovery of potential erogenous zones or sites of
erotic pleasure? And how might that eroticization happen without a simulta-
neous reification of disgust, or without the reduction of ones lover to an ampu-
tation, in which the absence of a limb is cast as the sum total of identity, exis-
tence, and worth? In other words, are there other models for desiring disability
that dont rely on the closed logic of devotee exceptionalism?
I find one possible answer to that question in the work of Eli Clare and Samuel
Lurie, lovers who explore the territory of disability and desire. Lurie is nondis-
abled, and he writes about Clares hand tremors (Clare has cerebral palsy), not
as something to be overlooked or passively accepted, but as something to be de-
sired. For Lurie, each of Clares tremors is a gift across his skin. Immediately,
my body started begging for that exact tremoring touch, he writes. When I dis-
covered that his right hand tremored more than the left, thats the one I pulled to
me, to rub my chest, cheek, thigh. I didnt want a single bounce to go to waste
(84). In this language of desire, a dramatic reimagining of cerebral palsy, tremors
become touch, each bounce a source of pleasure and delight.25
The tremors that bring Lurie such pleasure had often been a source of psycho-
logical pain for Clare. In an essay lamenting the ways in which bodies marked
by difference are stolen through physical violence and social isolation, Clare
confesses, Sometimes I wanted to cut off my right arm so it wouldnt shake. My
shame was that plain, that bleak (Exile 362). Clare describes the theft of his
body, condemning the effects of ableism, classism, sexism, homophobia, and
transphobia on his life; gawkers, discrimination, and misrecognition have too
often found their way under his skin. This shame, however, finds a powerful
antidote in Luries desire: He cradles my right hand against his body and says,
Your tremors feel so good. And says, I cant get enough of your shaky touch. And
says, I love your cerebral palsy. . . . Shame and disbelief flood my body, drown-
ing his words. How do I begin to learn his lustful gaze? Believing him takes more
than trust (Gawking 258; emphasis in original). Reading their essays together
makes clear how both make themselves vulnerable to each other, mutually nego-
tiating the terrain of their desire. Lurie recognizes this interplay, writing, there
was an utter magic in the combination of my wanting that very specific thing that
for Eli was the root of so much of his own struggles with his body (84). Seeing
his tremors register as erotic touch, Clare began to see himself through a lens of
desire rather than shame.
What, if anything, makes Luries desire different from the desire of the devo-

tees Ive sketched here? And what, if anything, distinguishes Clares response to
it from the welcoming responses of some amputees to devotees? These are not
simple questions, but they are ones that disability studies and disability rights
activism need to engage seriously: how can we desire disability, disabled bodies,
without falling into the exceptionalist logic of desire and disgust that pervades
devoteeism? How can we eroticize extraordinary bodies without fetishizing im-
pairment, without reducing human beings to spare parts and effacing the lived
experiences of disability?
One key distinction between Luries and Clares narratives and the narra-
tives circulating within devoteeism is their engagement with the larger culture.
Disgust appears in Clares essays as a political reality, mutable and debatable,
rather than as a natural and inevitable reaction to disability, as it is figured in
devoteeism. He acknowledges that many people may approach disabled bodies
with more disgust than desire, but he insists that such reactions be understood
in terms of larger cultural histories and practices of representation. Questions
about sexual desirability and self-esteem are seen as directly related to questions
about social recognition, political power, economic access, and sexual autonomy.
Clare not only challenges the gawkers but also condemns the institutionalization
of disabled people in nursing homes, the coerced sterilization of people with cog-
nitive impairments, and the segregation of disabled children in special class-
rooms. In stark contrast to devotee discourses, which present sexual desirability
as the only real problem facing people with disabilities, Clares narrative posi-
tions sexual oppression as inextricable from political oppression.
Versions of the tremor and touch story appear in several of Clares recent
essays, suggesting that Clare recognizes the revolutionary potential in his ex-
change with Lurie. What is exciting about this narrative, and what moves this
exchange away from the realm of devoteeism, is Clares hope that others might
come to feel a similar desire, might begin to recognize tremorsor stumps, or
scars, or sensory impairmentsas sensual gifts. In a series of questions that
refuse to posit disabled bodies as properly objects of disgust, Clare writes, If
I touch you with tremoring hands, will you wince away, thinking cripple, think-
ing ugly? Or will you unfold to my body, let my trembling shimmer beneath your
skin? (Gawking 260; emphasis in original). Let my trembling shimmer be-
neath your skin: finding the erotic in his tremoring touch, Clare refuses the ex-
ceptionalist logic of devoteeism. He speaks directly to his readers, tempting them
with the promise of his touch, encouraging them in their desires, never once sug-
gesting that devotees are the only ones who could ever find him sexy. Disgust
348 Alison Kafer

isnt seen as naturally adhering to particular bodies, and desire isnt assumed to
be the province of only a select few.
I recognize myself in Clares narrative of shame and desire; I am painfully
aware that I too have sometimes yearned to be free of a visibly different body,
have wanted to shield my broken parts from public view. As with Clare, how-
ever, my shame is countered by a desire to reclaim my body from the gawkers,
to revel in the bumpy scars that move across my skin or in the ease with which I
can curl up into myself, and into my lover, with my abbreviated body. I am moved
by Clares and Luries accounts, excited both by the details of their specific nego-
tiations and by the larger implications of those negotiations. I hear revolution
in this extra touching, an opening of possibilities in this reframing of cerebral
palsy. I want more such stories that make my skin tingle with possibility, that de-
mand recognition of my desires and desirability, that refuse to separate political
oppression from sexual marginalization. I no longer want to wade through de-
voteeisms narratives of disgust, narratives that erase the specificities of my life
and the breadth of my experiences, in order to find traces of desire. I want alter-
natives to tales of devotee exceptionalism; I want to imagine the possibility of
radical social and political change that affects all of us. Devoteeism would then
represent only one choice out of many, a choice that would no longer seem so
fraught with ambivalence.
For now, however, the ambivalence remains, settling in deep around me,
and my wanting only brings with it more questions. Even now, years and pages
later, I cannot answer all the questions Ive posed in this chapter, the questions
Ive tossed at you, the questions I imagine you have for me. These questions
are lodged in my bones, prickling beneath my skin, poking at my desires. Even
now, informed by feminist and queer theory, by the poetics of lovers like Lurie
and Clare, by my own experiences of desiring and being desired, I remain gut-
wrenchingly uncertain. This is an uncertainty fed by the stares I receive on the
street; an uncertainty stoked by the threats of disgust and promises of desire I
find in devoteeism; an uncertainty nurtured and tended by my own struggles to
come to terms with the substance of my desires and the terrain of my body.
Maybe this is all I can give you, this gut-wrenching, knotty ambivalence.
Maybe at this point we are served more by a willingness to sit with the com-
plexities than by an insistence on fixed positions or definite answers. If a feminist
and queer disability studies is about fundamentally questioning the processes by
which certain bodies, desires, and practices become normalized, then perhaps
searching for a single answer to the question of devoteeism is a misguided ap-

proach. And an answer to what exactly? The question of devoteeisms appropri-
ateness? The question of the desirability of my body? To give an answer would
be to suggest that Id untied the knot, when all I have are these strands, turning
and twisting in my hands.
noteS
I want to thank all of the amputees and devotees who have shared their thoughts and
experiences with me. For helping me navigate these complexities, I am grateful to the
participants in the Ed Roberts Seminar in Disability Studies at the University of Cali-
fornia, Berkeley, 20062007, and, especially, Sarah Chinn, Anna Mollow, and Dana
Newlove.
1. Part II, e-mail to the author, 25 November 2000; Your Article, e-mail to the
author, 17 November 2000.
2. Although I still occasionally receive such e-mails, I received a large number of
them on a fairly consistent basis from 20002002.
3. See Raymond J. Aguileras Disability and Delight: Staring Back at the Devotee
Community for another example of an amputee first encountering devotees online.
4. Contributors to devotee websites seldom post under their full names, relying on
pseudonyms or disclosing only their initials. This practice stems from the stigma many
men experience as devotees. Fearful of rejection or ridicule, they prefer to keep their
desires private, identifying with devoteeism only among other devotees or under other
names. As a result, many devotees use the language of passing and coming out to de-
scribe their participation in devoteeism; devotee discourses are full of coming-out
stories in which devotees describe having first realized the nature of their attraction
and/or how they explained it to their friends, coworkers, and family. Some devotees
explicitly align themselves with lGbtQ populations, arguing that devotees deserve the
same kind of social recognition and acceptance that has been granted to lGbtQ people.
(Of course, the degree to which queers have attainedor desiresuch recognition is
debatable, and, as I suggest below, devotee discourses are marked by a heteronorma-
tivity that renders any allegiance to queer communities suspect.)
5. For an example of the medical approach to devoteeism, see Bruno. In the last few
years, both the popular press and the field of cultural studies have discovered devo-
tees, pretenders (nondisabled people who want to pass as disabled and/or use adaptive
technologies such as braces or hearing aids), and wannabes (nondisabled people who
feel they were born into the wrong bodies, often undergoing elective or self-surgery to
impair themselves). Like the medical accounts that precede them, many of these stories
are concerned primarily with tracing the etiology of these conditions (e.g., Elliott).
While amputees figure in the medical texts almost exclusively as the unwilling and un-
witting victims of devotee exploitation, they appear in these more recent texts as envy-
350 Alison Kafer

inducing reminders of the beauty to be found in fragmentation and separation (e.g.,
Lingis). None of these accounts of disability and desire attends seriously to the material
effects of ableism on the lives of disabled people.
6. See Duncan; Duncan and Goggin; Hagglund; and Storrs, Caveat and Ampu-
tees for accounts of these kinds of behavioral and attitudinal changes.
7. Margrit Shildrick and Fiona Kumari Campbell provide two exceptions, each
briefly addressing devoteeism in their recent examinations of disability and subjec-
tivity.
8. On devotee demographics, see D. Dixon; Nattress.
9. For a discussion of devoteeism among gay men, including personal reflections
on the phenomenon, see Aguilera; Aguilera et al.; Guter. Some nondisabled straight
women identify as devotees, but they are in the minority; almost all of the postings on
devotee websites involve male devotees, and only a few female devotees have attended
amputee-devotee conferences hosted by organizations such as AScotworld. I can find
very little mention of lesbian devotees, and several Internet hits on the topic consist of
requests from male devotees for sexy dyke amps or feature explicit photographs of sex
between nondisabled men and disabled women. I obviously cannot rule out the exis-
tence of lesbian devotees, but they do not play a role in the devotee discourses under
discussion here.
As even a cursory Internet search of devoteeism makes clear, devoteeism is by no
means limited to the United States or English-language websites and communities; as
far as I know, however, there are no studies of the global devotee population.
10. It is this siting of desire in an amputees stump that leads most outsiders, includ-
ing medical professionals, to cast devoteeism as a form of fetishism (a form of sexual
desire in which sexual gratification is tied to the real or fantasized presence of an object
or body part, often to the point of obsession). Devotees, however, resist this character-
ization for two reasons: first, they object to the medicalization of their desires, asserting
that there is nothing pathological or diagnosable in their attraction for amputees; and
second, they insist that they are not fixated on stumps, but are attracted to the whole
person, so the label does not accurately apply. Although I am sympathetic with their
first complaintI, too, am reluctant to cast their attraction (as opposed to their be-
havior) as pathologicalI have my doubts about the second; as I suggest here, their
understanding of the whole person seems completely bound up in the stump itself.
11. When Paul McCartneys (now defunct) relationship with Heather Mills first be-
came public, devotee websites buzzed with the news that McCartney had finally come
out as a devotee. Despite the fact that McCartney had never expressed a particular
desire for disabled women, the mere fact of his involvement with an amputee was seen
as irrefutable evidence of his true identity. In this characterization of the McCartney
and Mills relationship, her status as an amputee is the only factor that matters.
12. Personal communication, 26 October 2000. For a brief reflection on the use of

the term ladies in amputee-devotee communities, and an extended analysis of gender
roles within devoteeism, see Kafer, Inseparable.
13. I want to caution against reading K.s remarks as an argument about the ir-
relevance of sexuality to rehabilitation. Disability rights activists and disability studies
scholars have argued persuasively about the importance of holistic approaches to rehab,
including information about sexual function and attention to sexual self-awareness.
K.s comments are noteworthy for their challenge to J.s single-mindedness; I read them
less as an argument about the place of sexuality in the recovery process than as a rebuke
of J.s approach.
14. See, among others, the work of Block; Clare; Kafer; OToole; Shakespeare et al.;
Waxman-Fiduccia; and A. Wilkerson for examinations of sexuality and people with
disabilities.
15. AScotworld, for example, bans from future events any person who acts out or
maliciously causes trouble, discouraging members from taking unauthorized photo-
graphs and loitering uninvited at amputee events.
16. Nattresss complete list: (1) Seeing a woman on crutches or limping, following
her to verify her status as an amputee, and then learning as much as possible about her.
(2) Sitting in a public space where others have seen an amputee in the hopes of see-
ing, photographing, and possibly meeting her. (3) Collecting photographs and articles
about female amputees. (4) Drawing pictures of amputee women or modifying existing
pictures to make the featured woman into an amputee [a process known as electronic
surgery]. (5) Keeping a detailed list of female amputees. (6) Developing programs or
starting organizations that serve amputees. (7) Calling female amputees whom one has
read about in order to learn what their lives are like. (8) Carrying on extensive corre-
spondence with a female amputee, often pretending to be a female amputee oneself.
(9) Asking an amputee one already knows for the names and numbers of other female
amputees. (10) Writing fiction starring amputee women or women who become ampu-
tees. (11) Researching the amputee-devotee community or disability issues in order
to meet disabled women. (12) Possessing and providing information on wheelchairs,
prosthetics, and other assistive devices to women with disabilities (1819). Few devo-
tees, Nattress stresses, partake in all twelve. The difficulty in ascertaining which behav-
iors constitute harassment within devoteeism, and the ease with which secretly follow-
ing and photographing women is accepted, is evident in the wide range of behavior in
Nattresss list. Writing fiction about amputees is a completely different kind of activity
from following an amputee home, yet they are presented here, side-by-side, as if no
such difference existed.
Number eight in Nattresss listmasquerading as an amputeebegins to blur
the line between devotees, pretenders, and wannabes. Pretending in Nattresss
schema, however, is more a means to an enda way to meet female amputees, the
object of a devotees desirethan an end in itself. For most pretenders and wanna-
bes, the erotic attraction is to appearing and/or being disabled oneself, rather than to
352 Alison Kafer

being sexually or romantically involved with another disabled person (Bruno; Elliott;
Harmon, this edited volume).
17. Opinions are mixed as to the best way to accomplish this increased social accep-
tance, but there appears to be agreement that such an increase is necessary. Although I
do not have space to explore it here, the question of a possible link between the devo-
tees desire and the social taboos surrounding that desire merits exploration. Would
devoteeism be as appealing for some of these men if it were no longer so esoteric or
taboo? Are they as drawn to the possibility of social and sexual transgression as they are
to disabled bodies? Is part of the pleasure of devoteeism found in bonding with other
men around secret desires?
18. Gregson profiles an amputee who experiences this fear.
19. During the annual meeting of the Amputee Coalition of America (AcA) in
1996, female amputees held an emergency women-only meeting to discuss the devo-
tee problem at the convention. Some women felt they were being harassed; others
felt uncomfortable not knowing whether they were secretly being watched. During
the meeting, attendees voted to urge the AcA to ban all devotees from future conven-
tions and events. Immediately afterward, they invited LeRoy Nattress to present his re-
search on devotees. Nattress explained to the assembled women that an outright ban
on devotees was not only inappropriate but unfeasible. According to his research, 80
to 90 percent of the devotees in attendance were either spouses of amputees or pro-
fessionals working at the conference (prosthetists, therapists, etc.). Based on Nattresss
recommendations, the women decided to abandon their call for a ban and resolved in-
stead to hold two women-only meetings at future AcA meetings (Nattress).
20. For a discussion of these difficulties, see Shakespeare et al. 74.
21. Non-devotee versions of such imagery might be easier to access for amputees
involved in queercrip communities. For two queer meditations on the use of medical
equipment in and/or as sex play, see Nomy Lamms description of prosthetic legs as
dildos (152) and Robert McRuers analysis of performance artist Bob Flanagan (Crip
Theory 18194). For a sexually explicit and defiantly queercrip example of making a
wheelchair sexy, see Loree Ericksons film Want, which powerfully combines footage
of Erickson, her attendants, and her lover with a voice-over about living in an ableist
society.
22. Most of the women depicted in professional pictures, such as those produced
and sold online by AScotworld, cd Productions, and other amputee-owned image
sites, receive payment for their services. Unfortunately, many of the images that circu-
late among devotees were not produced under those circumstances. Collectors often
have pictures of unknown amputees that they either bought from other devotees or
downloaded off the Internet, and the Internet is littered with photographs of anony-
mous amputees. Because there are reports of amputees having their pictures taken
without their permission, it seems likely that at least some of the pictures in circula-
tion were obtained under false pretenses. Indeed, the proliferation of unauthorized

photographs renders it nearly impossible to determine whether or not the photo trade
exploits amputees. Images that might initially appear the most exploitativepictures
of naked or partially clad amputees in sexually suggestive or explicit posesmay actu-
ally be less exploitative than the candid images of fully clothed amputees involved in
mundane activities.
These facts render my pleasure in viewing these images particularly problematic.
Most of the images that I find most intriguing are the ones of unidentified women
smiling at the camera as they sit in the grass or work in their kitchens or move down
the street. These photographs, unlike the swimsuit and lingerie and donning and
doffing prosthetics photographs, are much more likely to have been obtained without
the womens permission.
23. Indeed, people with disabilities are not all similarly located in the rhetoric or
logic of devoteeism. Amputation, paralysis, and deafness are commonly represented
in devoteeism; autism, depression, multiple chemical sensitivities, and anxiety are not.
Perhaps nonapparent impairments are more difficult to fetishize than those that mark
the body or that necessitate some kind of adaptive (and readily apparent) technology.
Perhaps also the rhetoric of disgust on which devoteeism relies so heavily requires
some kind of visual marker. Thanks to Jen Patterson and Anna Mollow for bringing
this difference to my attention.
24. For reasons that I hope are clear in this chapter, I have always been vigilant about
not disclosing any details of my personal life to people involved in devoteeism, includ-
ing my queer identifications. My silence, of course, is read as a sign of both heterosexu-
ality and an acceptance of heteronormativity; as a result, I have been exposed to devo-
tee discourses about the causes of homosexuality among disabled women. Amputees,
I am told, occasionally turn to female lovers because they are unable to find men who
will accept disabled partners. The specter of lesbianism thus serves as justification for
increasing social acceptance and awareness of devoteeism; the proliferation of devotees
would render lesbianism unnecessary, a goal we all are assumed to share. This twist
on the sexist and heteronormative position that all lesbians are failed heterosexuals
unquestionably affected my stance toward devotees, making it more difficult for me to
accept them as fellow deviants. For a brief examination of heterosexism within de-
voteeism, see Kafer, Inseparable. For a satirical take on the assumption that disabled
people turn to same-sex relationships because of an inability to find heterosexual part-
ners, see Walloch.
25. Clares and Luries stories are part of a small but growing number of mem-
oirs, essays, and manifestos that present sex and sexuality as an integral part of the
lives of disabled people (e.g., Finkelstein; Kleege; Linton, My Body; Lamm; OToole;
Want). I focus on this particular example rather than others because it explicitly ad-
dresses the issue of desiring disability, of finding the erotic in a particular bodily sign
of impairment.
354 Alison Kafer

17
kRisten haRMon
Hearing aid loverS,

PretenderS, and deaf wannabeS
the Fetishizing of hearing
This is a special meeting place for people who have a deep felt desire to wear hearing
aids for pleasure, even though not deaf, and for those who find that hearing aids and
deafness have erotic and fetish qualities.
It is also a place to discuss the more radical topic of being a deaf wannabee, and
a meeting place for those who have decided at some time in their life to cross the
bridge and choose to become deaf by impairing their hearing.
Description, Deaf-Wannabee Yahoo Group
At first glance, phrases such as hearing aids for pleasure, gaining hearing loss,
and acquiring deafness seem out of place, potential typos in the social text.
With a hearing aid, really? You wanna be . . . what? Desiring deafness ques-
tions what we consider to be authentic physical, social, and cultural indicators
of hearing status; desiring disability renders unintelligible our constructs of the
normate body and its pleasures.1 Embodiment, Judith Butler writes, is not
thinkable without a relation to a norm, or a set of norms (Undoing 28). Social
norms are grounded in binary constructions such as ability/disability, in which
disability is the contested and stigmatized opposition of ability. Because desiring
disability undoes a person, in reference to existing bodily integrity norms, per-
haps the thorniest discussion here has to do with this binary, whether or not such
desires are transformative, or reiterative, and of which norms.
It seems clear from the outset that a fetishistic interest in hearing aids
assistive devicesis necessarily predicated upon, or is a product of, the medi-
cal model. Because of the medical model, the sense of hearing is made over into
a commodity or magical fetish. However, disability and deafness and the Deaf
cultural and linguistic community are generally conceptualized as separate, so-
cially bound categories; interrogating the fetishizations generated by the medi-
cal model alone cannot quite address the questions posed by those who choose
to deafen themselves.2 Can such a person say, I dont feel so hearing no more,
and simply begin a life in a deafened body and/or initiate a Deaf identity? This
chapter explores some of the theoretical, ethical, and rhetorical issues surround-
ing the desire of deafness, first as object and then as subject.
Sexologists argue that there are three general categories of disability fetishists:
devotees, pretenders, and wannabes. According to Richard L. Bruno, Devotees
are nondisabled people who are sexually attracted to people with disabilities,
typically those with mobility impairments and especially amputees; Pretenders
are non-disabled people who act as if they have a disability by using assistive de-
vices (e.g., braces, crutches, and wheelchairs) in private and sometimes in pub-
lic so that they feel disabled or are perceived by others as having a disability;
Wannabes actually want to become disabled, sometimes going to extraordinary
lengths to have a limb amputated (24344). These groupings also appear in the
Internet discussion group Deaf-Wannabee. However, they are descriptions of
very general and fairly porous principles of attraction; members may transi-
tion from one group to another or simultaneously self-identify with more than
one deaf fetish label. In the discussion group, there is considerable overlap be-
tween devotees and pretenders; many of the devotees post pictures of hearing
aid wearers and also chronicle their own experiences with wearing hearing aids
in private and in public. Devotees and pretenders tend to be (but are not exclu-
sively) male, professional, educated, andjudging from contextual information
or self-disclosurewhite and heterosexual.3 In contrast to the wannabes, the
pretenders and devotees tend to have more erotic sex play regarding use and
sight of hearing aids; they also are more likely to self-identify as having fetishes.
Despite the title that emphasizes the wannabe portion of the membership,
Deaf-Wannabee desire is generally focused upon the wearing and use of hearing
aids (by devotees, or hearing aid lovers, and pretenders). Some members do,
356 Kristen Harmon

however, focus primarily upon crossing the bridge, or self-deafening (and for
lack of a better term, I will refer to them as wannabes in this chapter). This par-
ticular English-language Internet discussion group began in the spring of 2000,
and by the fall of 2006, the mostly British and Western European members had
exchanged over two thousand messages (and at the time this chapter was writ-
ten, there were over seven hundred active and inactive members from several
countries, including the United States).
While it is difficult to generalize from the group members sporadic inter-
changes and the fluctuation in participation, it seems that in the Deaf-Wannabee
group, a slight majority of those who describeor at the very least, articulate
self-deafening desires are women, particularly young women. A large percentage
of both male and female wannabes already have some degree of naturally occur-
ring hearing loss; of those, many express interest in exerting some level of con-
trol over the process. Still others intentionally deafen themselves for reasons
that are more aligned with identity and/or body integrity.
Motives for deafening vary; some cite desire for membership within the Deaf
community while others want the deafened body and sensory state. As a varie-
gated grouping, those who desire, simulate, and choose disability do not easily
align with academic and political efforts to refram[e] disability, as Garland-
Thomson puts it, as another culture-bound, physically justified difference to con-
sider along with race, gender, class, ethnicity, and sexuality (Extraordinary 5;
emphasis added). Even in Lennard Daviss call to reverse the hegemony of the
normal and to institute alternative ways of thinking about the abnormal, the
normal/abnormal binary remains intact, as will always be the case in an able-
ist and audist society (Enforcing 49).4 In such a context, desiring and crafting an
abnormal body or persona raises uneasy questions about embodiment, authen-
ticity, and the sociopolitical aspects of deafness and identity.
From the Duke in Mark Twains Adventures of Huckleberry Finn to a man
pretending to be hearing impaired in order to get released from a speeding
ticket, Deaf imposters or pretenders are nothing new. When it comes to men and
women who wear hearing aids or who pretend to be deaf or hearing impaired
on occasion, public consensus suggests that this behavior, although suspect and
perhaps perverted or fetishistic, is nonetheless legible, from an academic or
empirical perspective. Perhaps the use of hearing aids is a sign of displacement
or projection (as theorized by Sigmund Freud), or perhaps this fascination with
hearing aids is part of the fetishization of many objects in our culture associated
with the feminine or the vulnerable, such as high heels. Perhaps such fixation
The Fetishizing of Hearing 357

upon or use of hearing aids is another incidence of a paraphiliac fascination that
can then be explained in the terms of the social science and medical discourses.
Perhaps fetishists have a psychiatric disorder that causes the fixation; perhaps
such obsessional thinking and use of objects is a marker of psychiatric disability.
Fetishists of the body modification and cyborg tradition might add, ironically or
not, that hearing aids are a technology that can be worn as a marker of the bodys
sensory limits or excesses.
Most of these theories of the fetish stress the retroactive or repetitive nature
of meaning making from within a particular individual, and as such, fetishistic
desires resist regulation. As the literary critic Rebecca Comay notes, the happy
pervert is not motivated to seek analysis, just as the enraptured consumer is mol-
lified by the gleam of things (55). Comay goes on to say: These versions of the
fetish therefore involve a similar temporality of stasis. By freezing timeat the
moment before the traumatic insight (Freud) or as the abstraction of inert ex-
changeable instants (Marx)the fetishist seeks to pacify the restless Nachtrag-
lichkeit: the incessant self-rupturing of history (55). In this context, such actions
are stigmatized, to be sure, but they are socially legible, as deferred or reiterable
actions. One can make meaning out of these object fixations, feel turned off or
turned on, as the case may be, and call them deviant desires. One can even
look up Curtin University of Technologys rather proper-looking Department
of Podiatry on the Internet and see a lengthy and resourceful web page on the
The History of Footwear: Foot Fetishism and Shoe Retifism, complete with ety-
mologies (retifism being a more precise term for sexual attractions to shoes).
As ides fixes, certain object fetishes have entered into the public discourse in
ways that the disability fetishes and wannabe desires have not.
As one Deaf-Wannabee member pointed out, a foot fetish is relatively tol-
erated as a fetish; most people, she notes, consider foot fetishes to be strange de-
sires, but not out of the realm of possibility for other people. This member won-
ders why, when foot fetish erotica is easy to find and when one can fairly easily
find amputee eroticaa fetish that she acknowledges most people would find
difficult to comprehenddeaf erotica is difficult to find (bbc Showa good
idea???, Deaf-Wannabee, July 2006).5
Despite the context this writer provides for understanding fetish, the notion
of what constitutes deaf erotica for members of this group is not uncompli-
cated, and the members sometimes feel the need to clarify their motives or to
point out differences among desires. After a posting entitled, Fetish or . . . ??,
358 Kristen Harmon

(Deaf-Wannabee, July 2006), both male and female members responded by
clarifying their own positions in reference to the other members: some noted
that they get excited but are not responding sexually, while others noted that
the attraction is sexual or erotic. Still others noted that they wanted the silence of
a deafened experience. A list member who identifies herself as a pretender gave
an interview on Ouch!, a disability oriented bbc podcast, noting that, By the
way, its not a sexual thing for me although it is for most of the other pretenders
I know. I just think its cool . . . like wow, I wish I could be cool like deaf people
(Ouch! Podcast 18).
Pretender and devotee postings are more common from the men in the group.
These run the gamut between the overtly prurient, asking for pictures and videos
(Any pictures and/or video . . . , Deaf-Wannabee July 2002), to wistful postings,
such as the one from a married hearing man, who confesses to a huge attraction
to women with hearing aids; he continues his musing and notes that he would
not hesitate to have an affair with a woman with hearing loss, but because hes
not a person prone to cheat, he will have to wait and see if his wife ever develops
a loss. He adds, in a confessional tone, that if he did meet a hard-of-hearing or
deaf woman who wanted to play around, his commitment to his wedding vows
would be severely tested (One More Comment, Deaf-Wannabee, March 2006).
Despite the fact that several of the devotees and pretenders describe being
in relationships with hard-of-hearing or deaf people, perhaps the projective ele-
ment inherent in fetishistic fantasies would account for the oddly asexual (in
the sense of being described independently of sexual acts), yet furtively excited,
nature of many e-mail exchanges between group members, particularly in re-
lation to sensation and to the thing-ness of deafness and hearing loss: From
an early age I had a deep fascination with ears. As a child I was absorbed by the
sight of [a] girls ears, and with putting objects in my own ears (qtd. in Suggs
45).6 Im very interested in the body hearing aids, and I think they look cool
on girls are also common sentiments. Often these postings are accompanied by
a request for photos of girls in hearing aids. The photo gallery consists almost
exclusively of photo albums containing close-up photographs of white men,
and the occasional woman, wearing behind-the-ear (bte) hearing aids or up-
close shots of the hearing aids themselves. The exception, a series of photographs
of a glamorous white womans face, pouting and posing for the camera, is jarring,
particularly as her relation to hearing aids or deafness is not made observable.
Notwithstanding the connotation that the model has possibly had plastic surgery

and the corollary fetishizing of female body parts, the normative and normate
values the photograph expresses in relation to objectified or eroticized beauty
seem out of place in this discussion groups photo gallery.
The fetishists in the Deaf-Wannabee group generally use the group as a con-
fessional, a resource room, or as a source of fetish-related erotica of sorts
including a picture gallery of hearing aidsrather than as a hook up site,
though, to be sure, that does happen. Similarly, as Raymond Aguilera points out
in relation to the Dragonworks Devotee Community, pictures [of amputees]
were relatively soft-core, and could in fact barely be called pornography at all . . .
notably less explicit than mainstream pornography. . . . In the written stories too,
there seemed to be a surprising lack of actual sex (256; 257). Instead of overt
or explicit sexual or erotic identification with deafness, a new member typically
expresses profound relief and delight for having found that he or she is not the
only one in the world who has felt this way about hearing aids and deaf people.
On the whole, from within and from without, there seems to be a lack of con-
ceptualization of what it might mean to have a fetishistic interest in a wearer of
hearing aids or a (fetishistic) desire to have sexual encounters with a person with
an altered sense of hearing. Such conceptualization might point to the limitation
of using reified labels for a singular fetishistic behavior or interest, particularly
because fetishes for particular disabilities or disability accoutrements can some-
times coexist; for example, the hearing aid fetish can coexist with a fetish for
braces, or for eyeglasses and leg braces. (While some members mention mem-
bership on other online disability devotee communities or mention co-occurring
fetishes, most often fetishes for hearing aids or hearing aid wearers are discussed
as isolated desires.) In any case, one has only to look at the long lists of names of
particular fetishes, borrowed from sexological studies and then placed in titil-
lating contexts such as the Encyclopedia of Unusual Sex Practices, to see that the
fetish is, in the public eye, a curiosity and source of amazement. As a descrip-
tive term for pretender and devotee desire, fetish offers up surprisingly little,
other than connotation and stigma.
The use of fetish terminology is further complicated when one looks to see
the formal use of the word in psychiatric discourse. In the American Psychiatric
Associations Diagnostic and Statistical Manual of Mental Disorders, fourth edi-
tion, text revision (DSM- TR ), fetishes are found under the general category
IV- Disorders and finally under the diagnostic cate-
of Sexual and Gender Identity
gory of paraphilias or recurrent, intense sexually arousing fantasies, sexual
urges, or behaviors generally involving 1) nonhuman objects, 2) the suffering
360 Kristen Harmon

or humiliation of oneself or ones partner, or 3) children or other nonconsent-
ing persons that occur over a period of at least 6 months (566). The diagnostic
terms for the identified paraphilias are: exhibitionism, fetishism, frotteurism,
pedophilia, sexual masochism, sexual sadism, transvestic fetishism, voyeurism,
and paraphilia not otherwise specified (American Psychiatric Association 567).
While it seems that nonhuman objects are descriptive of hearing aid fetishes,
this is complicated by the commodification of hearing aids; as products readily
available from online sources and dealers, and as products that are presented as
desired devices for deaf children and the elderly to wear, hearing aids are non-
human objects that have taken on the magical stance also associated with cul-
tural fetishes.
A fixation with a wearer of hearing aids could, however, be very loosely con-
strued as a fascination with a nonconsenting partner, and this certainly has
relevance for people who wear hearing aids and who have been approached by
people who seem rather too interested in the fact of ones hearing aids. However,
as fetishes are currently construed, this emotional or social discomfort does not
have psychiatric bearing. According to the DSM- TR, Paraphilic imagery may
be acted out with a non consenting partner thatIV-may be injurious to the part-
ner, as in sexual sadism or pedophilia (American Psychiatric Association 566);
the further refined criteria outlined under Fetishism focuses upon nonliving
objects, with no mention of a nonconsenting partner (American Psychiatric
Association 56970). Nonliving objects are carefully distinguished from the
use of female clothing, as in transvestic fetishism, or when an object is geni-
tally stimulating because it has been designed for that purpose (American Psy-
chiatric Association 570).
The DSM- TR also insists, in bold type, on the distinction between these
disorders andIV- the nonpathological use of sexual fantasies, behaviors, or ob-
jects as a stimulus for sexual excitement in individuals without a Paraphilia
(American Psychiatric Association 568), noting as well that many individuals
with these disorders assert that the behavior causes them no distress and that
their only problem is social dysfunction as a result of the reaction of others to
their behavior (American Psychiatric Association 567). Because self-reports
are subjective, and because there are not clearer, more empirical criteria for a
diagnosis, one wonders where the specification lies between an individual with
a paraphilia and an individual without paraphilia: what does one do with a non-
criminal, happy pervert who physically harms no one other than perhaps him-
self or herself?

The diagnostic criteria for a fetish paraphilia also require that fetish-related
fantasies, sexual urges, or behaviors cause clinically significant distress or im-
pairment in social, occupational, or other important area of functioning (Ameri-
can Psychiatric Association 570). Though the devotee and pretender members
of the Deaf-Wannabee group share stories about the difficulties of coming out
and share fears of disclosure, they generally do not express significant distress
(the case is perhaps different for some of the wannabes).
On the whole, in a system where normality is broadly equated with desir-
ability, where move[ment] towards the norms of sexual function is framed
as an improvement (Downing par. 2), one wondersuncomfortably, given
the context of disability fetishabout the limits of measuring sexuality. Writing
about lGbt sexuality, Butler makes a point that has provocative implications for
a discussion of deaf and disability fetishism: Sexuality is not simply an attribute
one has or a disposition or patterned set of inclinations. It is a mode of being
disposed toward others, including in the mode of fantasy, and sometimes only in
the mode of fantasy (Undoing 33). Object fetishes are acceptedeven celebrated
as subversive or liberatorywithin queer and SM communities. Can fetishes for
hearing aids and attempts at self-deafening be placed within the same category?
In addition to the sociopolitical ramifications of perceived foul play done to
ones body, the sticking point seems to be the opposition of ability and disability,
and the exclusion of disabled and d/Deaf people from compulsory heterosexu-
ality by way of compulsory able-bodiedness (McRuer, Crip Theory 2).7
Yet because these pretender and devotee fetishes tend not to harm the physi-
cal body, and because this particular use of hearing aids reflects consensual be-
havior or a private decision, does this mean that co-opting of deaf apparatuses
hearing aids, or even a deaf voiceis ethically unproblematic, particularly in
regard to real deaf and deafened bodies? Kath Duncan, a double congenital
amputee and activist, suspects that the distance between the biomedical gaze
and the adoring one . . . is not so very far. The devotee gaze is enabled by domi-
nant, powerful envisioning of different bodies (11). In her famous essay on visual
pleasure in narrative cinema, Laura Mulvey (by way of Freud) contends that the
first source of pleasure in looking, scopophilia, arises from using another per-
son as an object of sexual stimulation through sight (and as such, scopophilia
is one helpful way to define the fetishistic qualities of a fascination with a non-
living object that is worn by a nonconsenting partner). The second source
of pleasure, for Mulvey, comes from identification with the image seen (441).
362 Kristen Harmon

The significant point here is that the pleasure in looking has been split between
active/male and passive/female (Mulvey 442). The phallic principle and gen-
dered oppositions upon which Mulveys theory depend certainly do not easily
explain (or they invite a too facile explanation of) queer and straight womens
uses of hearing aids. Yet Mulveys general theory of the gaze does indeed open
up some of the general ethical questions raised by the pretender and devotee
fetishes.
The idealization here seems less about the disabled body per se and more
about the use of a common prosthesis as a trope. Instead of correcting a defi-
ciency, the use of hearing aids supplies a deficiency, and in doing so, the gaze
fill[s] a gap, but . . . also diminish[es] the body and create[s] the need for itself
(Jain 44). So this use of hearing aids endlessly refers back to the medical defini-
tions of impairment, but arguably fueling the relations of looking are two ideal-
ized subject positions not wholly unlike those Mulvey theorizes: one subject
whose gaze puts her or him in a position of mastery, and another who becomes
merely a sensate body (with a prosthesis). In ways that perhaps exceed Mulvey,
however, devotees, pretenders, and wannabes position themselves on both sides
of this exchange.
One pretender and wannabe writes, Another method I have used is to place
cotton wool deep in my ear canal. Pretty effective, and it allows a longer term as-
sessment. . . . After several months of simulated deafness I have removed it and
then spent several days with normal hearing, and then returned again to the trial.
Its totally controllable and safe. She continues by noting her decision to adopt
hearing loss, I have decided that I really do want to take on board a mild hearing
loss which is sufficient to justify the enjoyment of wearing a second hearing aid
(qtd. in Suggs 52). Similarly, another pretender and wannabe writes, I want to
use hearing aids, and have the enjoyment of doing so and knowing I need them.
As near as possible I want normal hearing with my hearing aids (qtd. in Suggs
63). In addition to creating the need for hearing aids, these members place
emphasis upon normal and control over the process, which seems to suggest
that the weight lies upon the hearing aid as prosthesis, supplying disability.
Another pretender, one who writes prolifically about his experiences with
hearing aids, by turns warns and titillates other members by noting that the first
experience with using hearing aids could disappoint because the listening ex-
perience is so new and different. He then instructs his fellow pretenders, with
liberal use of exclamation points, to look in the mirror in order to see how won-

derful the new hearing aids appear (How to Wear Your bte, Deaf-Wannabee,
August 2004). The writers use of a mirror seems scripted, it fits so well with the
scopophiliac process Mulvey describes.
Homi Bhabhas conception of the racial fetish is also useful for exploring
the implications of a member of a majority population taking on characteristics
of a minority. Bhabha draws upon the logic of Oedipal conflict and castration
fears, and he argues that the resultant fetish provides a mechanism for under-
standing the nature of displacement, in that the logic of stereotyping in the pub-
lic domain draws upon the same mechanisms that underlie the fetish in the pri-
vate domain. In this paradigm, the fetishist, or the dominant individual, then
projects otherness and difference . . . upon the disparaged group (Straker 412).
According to Bhabhas theories, in the fetishists mind the assumption of
otherness applies to all in the same group. In the context under consideration
here, the resulting stereotype could allow for the use of deaf people, in particu-
lar, or hearing-aid users in general, as a fetish to suspend belief in Otherness
even while being cast as Other (Straker 412). One Deaf-Wannabee group mem-
ber, describing how he developed a hearing aid fetish due to a mild hearing
loss as a youth, wrote that with the new aids I suddenly received an unprece-
dented amount of attention . . . My hearing aids had changed me from a zero
to a superhero (qtd. in Suggs 67). This writer shows the same inverted logic in
a later post, in which he both is Other and desires Other: Yes Im most deAFi-
nitely turned on by the feel and sight of myself in hearing aids . . . In fact Im
convinced I perform far better sexually when I have them in! This belief is essen-
tial to my fetish (qtd. in Suggs 68). This writer mentions that his sexual partner
is hard of hearing and that he has dated real deafies before (without disclos-
ing his fetish). His comments could read as confirming Bhabhas link between
stereotypic representation and fetish as process of displacement: For fetishism is
always a play or vacillation between the archaic affirmation of wholeness/simi-
larityin Freuds terms: All men have penises; in ours: All men have the same
skin/race/cultureand the anxiety associated with lack and differenceagain,
for Freud Some do not have penises; for us Some do not have the same skin/
race/culture (74). Substitute all men have hearing and some do not have
hearing, and the result is a similar recognition and disavowal; that is, the use
of hearing aids to enact a hearing-impaired persona or, alternately, to select
sexual partners on the basis of prosthetic machinery.
In a similar fashion to pretenders selecting sexual partners based upon their
lack, fairly common are devotee testimonies that describe early fascinations
364 Kristen Harmon

with a fellow child or teenager wearing hearing aids. Because this groups mem-
bership seems to skew toward members older than thirty-five, descriptions of
body aids are not uncommon. One member remembers dating a girl who wore
such a body aid, and he notes that the wiring and size of the objects in her ears
and on her body amazed him; he recalls her as an attractive girl, if not particu-
larly smart, and he doubts that he would have dated her if she had not been
wearing a body hearing aid (Re: New Here, Wife is hoh, Deaf-Wannabee, Sep-
tember 2005). She was a pretty girl, one whom he wanted to have, but perhaps
only because she provided a simulacrum of other pretty girls, reduced tobut
paradoxically powered bya pretty, plastic machine.
Regressive and culturally hegemonic elements recur in more explicit com-
mentssuch as I have a youthful female ears-wearing-hearing-aids fetish
and in requests for pictures of girls and women wearing hearing aids. Similar
postings make it clear that pictures of girls wearing hearing aids are sexier than
standard pornographic fare (deaf wannabee, Deaf-Wannabee, February 2001).
And a particularly baroque (and relatively rare, insofar as prurience goes) post-
ing notes that what is desired are young men who have been forced into wearing
diapers, coke-bottle bottom glasses, wheelchairs, and braces; this group member
loves to see young men in body casts and who are forcedwith great embarrass-
ment and discomfortinto wearing diapers. He also notes that he likes young
lovers in clearly visible hearing aids, particularly when these young men learn to
depend on the aids and can no longer function without them (Greetings dw-
group, Deaf-Wannabee, September 2001). Other sentiments along these lines go
in more detail into motivation, making it clear that what is attractive, especially
in the cases of multiple disabilities, is the element of pervasive dependence.
In one particularly memorable exchange, a writer with a fascination with
deafblindness engaged in a dialogue with a woman who was already blind and
was working on deafness. In his response to her post, he thanked her because
reading her post gave him the feeling that he could understand her from the in-
side and outside and that what attracted him to her was the permanence of her
situation, and the fact that she will always be dependent upon others. This par-
ticular fashioning of an erotic scenario struck him as very appealing because of
everything that he could do to help her (More Questions to L, Deaf-Wannabee,
August 2003). This dependence amplifies passive gender roles and robs the
disabled woman of independence, as the deafblind woman noted, in lengthy re-
sponses to this and other group members attraction to dependence (Question
to L and More Questions to L, Deaf-Wannabee, August 2003). Her points were

well received by the man who initially expressed a romantic interest in extreme
dependence; in addition to a cheery acknowledgment, he signed off with an af-
fectionate closing.
In discussions of fetishistic fixations, it has been suggested that because dis-
abled women and girls inherited ascriptions of passivity and weakness, pornog-
raphers and others sometimes selected them to portray as ultimate compliant sex
objects (Lowenstein 138). Sex play such as the following scenario pops up occa-
sionally in the narratives that women pretenders or wannabes post: one woman
with a devotee husband describes how, when she catches him gazing at her ears,
shell make a performance out of taking out the hearing aids, softly rubbing her
ears, and then, after close inspection of her earmold, slowly pushing the hearing
aid back into her ear. If he says something while the hearing aid is out, she pre-
tends not to understand and indicates to him that she cannot hear without her
hearing aids. He smiles sympathetically and calls her his deaf wife (K.s Side of
the Story, Deaf-Wannabee, November 2005). Another husband and wife play
with the notion of deaf wife and dutifully post their adventures online; this
time the woman tells him that he will have to speak louder on account of her
hearing loss, and her husband responds enthusiastically, with gratifying results
for both. She adds that playing the deaf wife was the performance of her life,
a role she was destined to play (New to Group, Deaf-Wannabee, September
2003).
In contrast, for the few men who described the erotic effects of wearing hear-
ing aids in a sexual situation, the locus of pleasure was turned inward. One man
writes, I . . . have a fetish of a turn on when someone plays with my hearing
aids while they are in my ears. Another confides, I would encourage intimate
partners to touch and if willing to play with my hearing aids while they were in
my ears. Those who were willing to do so gave me quite an EarOtic experience
(qtd. in Suggs 6667). Neither of these men divulged whether or not their sexual
partners also perceived this as role play.
At times, the juxtapositions among the eroticized interests of the pretenders,
the fascination expressed by the devotees, and the serious consequences of
intentional deafening created an uneasy dialogue among this group of people
brought together by a compelling need or desire for deafness. At one point, the
juxtaposition is jarring: a long and heartfelt personal narrative about progressive
hearing loss is followed by a different members long and rather eroticized and
objectified description of various techniques and tools for inducing deafness, in-
cluding a discussion of thresholds of pain.
366 Kristen Harmon

Becoming deaf by choice (or desiring self-deafening acts) is to risk what
Butler calls unintelligibility, in that the laws of culture and of language find
you to be an impossibility (Undoing 30). Perhaps in response to the threat of
unintelligibility, then, the wannabe members reverse pathologized phrases in
their descriptions. They write of gaining hearing loss as opposed to losing hear-
ing, acquiring deafness instead of having hearing. In their surprisingly posi-
tivist impressions of an absence, these phrases seem to enact a contradiction.
However, it is important to note that the terms of embodiment in both losing
hearing and gaining hearing loss endlessly refer back to the medical model.
Other phrases such as tuning a hearing loss in order to attain the desired deci-
bel loss appear to depart from this phraseology, and yet continue to point back
toward audition.
While these particular semantic changes are made for the purposes of nor-
malizing and incorporating self-deafening, a central observation of this chap-
ter is that this use of terminology stands in contrast to sociolinguistic and
community-oriented descriptors used by those in the culturally Deaf, signing
community. Deaf people use the construct of a Deaf World, as opposed to a
hearing world; Deaf and hard of hearing, as opposed to hearing impaired
or deafened; and fluency in American Sign Language (ASl) to describe users of
a full-fledged language, as opposed to manual communication. These descrip-
tors consciously insist upon a conception of self that is not ableist or audist, not
medicalized or pathologized; instead of focusing upon the absence of a sense,
these terms assert a holistic identity, grounded in language and community, in
visuality instead of (the lack of) audition. For Deafblind people, this sense of self
is mediated through the tactile. This is not to say that all of the wannabes use
medicalized terms of description; some of those who elect deafness, particularly
the women, also use the sociolinguistic descriptors for their desires; they want a
Deaf body and self.
Little wonder that there is such a visceral response to the description of self-
deafening; the act, or the desire for it, confronts head-on both essentialist (and
often medicalized) and social constructionist definitions of what it means to be
a deaf person. Does one desire the deafened body, the fact of deafness, or is it the
stereotypethe role playof a deafened person that appeals? Does one desire
a culturally Deaf identity and community, or is it a (possibly psychological or
physiological) desire for separation, disengagement from the noisy, intrusive,
hearing environment?
The Deaf community eventually discovered the presence of the Deaf-

Wannabee discussion group, and several Deaf people joined the list to express
their outrage and to raise pertinent points about the political relationships that
are obscured in the acts of elective deafness or passing as deaf. One new list
member, for example, wrote Enjoying yourself now, eh? Changing your identity
from hearing to HoH for kicks? Do you realize that d/Deaf people cant even
try to change themselves from d/Deaf to Hearing even if their lives counted on
it? (Pretending, Deaf-Wannabee, June 2004).
Whats wrong with becoming deaf or Deaf? Nothing, as long as you are al-
ready losing your hearing, as one respondent noted. For many Deaf people, in-
cluding those who joined the Deaf-Wannabee list, this is the boiling point. Pre-
tenders and devotees are generally avoided or dismissed. Hearing-aid fetishists
are seen as being fascinated with markers of oral deaf, or hearing impaired,
and as such, do not have much bearing on the discussion of cultural identity. In
a Deaf paradigm, however, it is the Deaf wannabes that present the biggest diffi-
cultyor, some would argue, affront.
Even though some Deaf parents may see a desire for deafness in their own
hearing children, there are some important differences in how these desires are
perceived. For one, there is the assumption sometimes made by wannabes that
learning sign language will gloss over the origins of elective deafness. Fluency
in sign language is an important marker of Deaf identity, but fluency is difficult
to attain and does not automatically entail membership. There is also the set of
beliefs and values embedded within the Deaf World, a concept used by Deaf
people in the United States to describe relationships among themselves, to the
social network they have set up, and not to any notion of geographical location
(Bahan et al. 5). As a social entity with embedded cultural and social ties, the
community resists hegemonic and stereotyped representations of deafness, Deaf
people, and signed languages.
Perhaps this is what one woman faced in her initial encounters with Deaf
people; she states that being Deaf is not what she imagined, and that Deaf people
can be just as complicated and as unfriendly as (hearing) people. Because of her
experience, shed begun to rethink crossing the bridge (Random Thoughts,
Deaf-Wannabee, October 2005). She does not describe how she met or ap-
proached Deaf people, how fluently or clearly she signs, or any other contextual
information, so its difficult to surmise, but one does wonder how her images of
Deaf culture as being nice, sweet, and happy influenced her reception.
What is particularly problematic is valorizing or glamorizing a community
without recognizing historical forces of social, economic, and linguistic oppres-
368 Kristen Harmon

sion. Hearing privilege in an ableist and audist society does not simply (or com-
pletely) vanish upon ones desire not to be hearing anymore. Despite the renun-
ciation of the sense of hearing, erasure of a privileged subject position is not as
easily accomplished. To better understand this difficulty, one only has to reverse
the direction of ability and disability. Consider that a deafened person who longs
and aches to be hearing and who spends countless hours in learning to listen
and in speech therapy in order to better sound like hearing people (regardless
of whether or not a hearing person can make himself or herself understood to
a deaf person) is approved in his or her desires to assume something closer to
the privileged subject position. It is also revealing to look at the ways in which
deaf and deafened people are encouraged to view hearing aids and cochlear im-
plants as that which will restore hearing (note here the logic of compulsory
able-bodiedness). This, despite the fact that cochlear implants do not provide
hearing, only an electrically coded representation, and hearing aids amplify and
compensate for sounds rather than substitute what is missing in the deaf persons
audiogram. Given the reification of hearing and the high-flown rhetoric sur-
rounding cochlear implants, a desire for hearing is a culturally enforced and en-
couraged fetish, but only if the person doing the desiring is already deaf through
natural causes.
Aside from repeated warnings about the irreversibility of hearing loss from
the Deaf-Wannabee groups founder, and several heated exchanges online about
the potential for taking away British National Health Service (nhS) resources
from an organically or naturally deaf person in order to satisfy desires (or
self-inflicted needs) for a hearing aid, there is little discussion of the ethical or
sociopolitical ramifications of elective disability. Concerns about coming out
with these desires could be a masking of the ethical and political difficulties of
desiring deafness; as the pretender interviewed on Ouch! muses, in response
to a question about what her colleagues think about what she does, You know,
I cant even imagine, I dont think I would lose my job, but I know I would lose
a lot of respect (2021). The interviewer presses her, and she continues, I cant
imagine what that would be like, if somebody were to find out. And its possible,
you know you cant ever keep anything totally secret . . . but I dont even like to
think about the possibility (21).
A few posts from Deaf people on Deaf-Wannabee call upon moral grounds
of right and wrong, but none of these arguments are fully articulated because the
nature of what is wrong with deafening oneself is socially bound in ways that
do not easily oppose the ethnicity model of Deaf community membership. If,

for example, a person deafens herself, learns ASl, and then becomes a student at
Gallaudet University, how is that person superficially different from a late deaf-
ened or oral deaf person who learns sign language as a young adult at Gallaudet
University? Granted, wannabe members tend not to become students at Gallau-
det, but the point here is that the distinction between self-deafened and Deaf in-
vites hard-to-quantify descriptions of a Deaf experience, or a Deaf tendency,
Deaf internalization (or Deaf immersion), and Deaf visuality. At its core,
the difference seems to rest in experiential and political aspects of living in and
through the Deaf World. Yet to state exactly what is wrong with self-deafening
is to evoke medical models (an evocation many in the Deaf World are under-
standably reluctant to make).
Aside from the occasional wondering about what a truly Deaf person would
think about desires to initiate hearing loss (Why Intrude Here? Deaf Wanna-
bee, June 2004), there is not much head-on, full-frontal, acknowledgment of
real Deaf people. One wonders how the discussion would change if there had
been more posts from a hearing (and signing) father of a deaf son. This father
seems to have joined the group because he does not use his voice when he signs
whenever it is possiblewith his son, and so he is often publicly perceived as a
Deaf person. He wears ear plugs even on vacation and continues in hearing but
acting deaf so he can experience the trip the same way his son would: he does
this so that when communication deteriorates, for example, at the airport, he can
model for his son how a deaf person should be treated. By doing so, he hopes
his son will learn how to advocate for himself in his interactions with hearing
people when his father is not around (Hearing Acting Deaf and Hearing Act-
ing Deaf II, Deaf Wannabee, August 2004). As a hearing person, he is surprised
by how many hearing people do not take the time to help someone communicate
his needs, and he implies he is taken aback by what hearing people say about deaf
people in their presence (Hearing Acting Deaf and Hearing Acting Deaf II,
Deaf Wannabee, August 2004).
Based on his experiences, he concludes that generally, people just dont care
(Hearing Acting Deaf, Deaf Wannabee August 2004). The responses to his
e-mails do not address what it means to care or to model how a Deaf person
and any deaf or hard-of-hearing personshould be treated with respect and dig-
nity. Instead, in reply to his posting, there are questions about where he found
effective ear plugs and also about his use of ASlfor example, how difficult it is
for a hearing person to learn sign language (Hearing Acting Deaf, Deaf Wanna-
bee, August 2004). While this particular respondent does inquire about the logis-
370 Kristen Harmon

tics of communication between a hearing and non-hearing person, as well as
the helpfulness of his sons hearing aid, there is no acknowledgment by mem-
bers either of the deaf sons individuality or of his fathers advocacy for him.
Aside from a heated exchange between Deaf visitors and group members
on Deaf-Wannabee, there has not been a sustained or productive dialogue be-
tween the wannabe online community and the Deaf community. In one angry
exchange, Deaf visitors and hearing or deafened members did not fully address
the fact that the other group or community existed; instead, the exchange served
to register and reinforce the highly emotional content of the discussion sur-
rounding the question, Whats wrong with desiring deafness?
My intent in this chapter has been to work through a range of theoretical,
ethical, and rhetorical issues connected to devotees, pretenders, and wannabes.
Given that these sexual subjects remain off the grid of intelligibility in our able-
ist and audist culture, it is not possible (or perhaps even desirable) to resolve
all of these issues. Yet perhaps one contribution to this heated dialogue could
be as follows: by highlighting the social underpinnings of intelligibility when
it comes to ability and disability and desire and pathology, hearing status here
is effectively made over into a magical fetish that displaces potency and impo-
tency with ability and disability in an ever circular logic that seamlessly resolves
(through disavowal) the challenges of living with difference.
noteS
1. Normate is Rosemarie Garland-Thomsons term for the social figure through

which people can represent themselves as definitive human beings. Normate, then, is
the constructed identity of those who, by way of the bodily configurations and cultural
capital they assume, can step into a position of authority and wield the power it grants
them (Extraordinary 8).
2. The use of the capital letter D in Deaf references a sociolinguistic and mi-
nority community centered around cultural norms and a signed language. In the
United States, such usage denotes Deaf people who use American Sign Language, or
ASl; some members of western European countries have adopted similar usage to de-
note their own culturally Deaf communities. The use of lowercase is meant to describe
those who are not culturally deaf but who have a similar hearing status.
3. This tendency is in keeping with the findings that fetishists or, to be more precise
in terms of psychiatric discourse, people diagnosed with paraphiliac fixations tend
to be heterosexual men (Aguilera 260; Seligman and Hardenburg 107).
4. Initially, audism was defined as the notion that one is superior based on ones

ability to hear or behave in the manner of one who hears (qtd. in Bauman 240). For
our purposes here, I point toward the usage of audism to describe a system of advan-
tage based on hearing ability, whereby the privilege allotted to hearing people can
be made visible and thus recognized (Bauman 241).
5. Deaf-Wannabee is a public Internet discussion group, but I have chosen to iden-
tify individual posters not by name but rather by the header title for individual postings
and by the date of posting.
6. Quotations in Trudy Suggss article Deaf Wanna-bes are a verbatim recording
of the original discussion postings on Deaf-Wannabee.
7. Alison Kafer expands on Robert McRuers notion of compulsory able-
bodiedness, writing that able-bodiedness has been cast as separate from politics, as a
universal ideal and a normal way of life, in much the same way as heterosexuality in the
1970s and early 1980s (Compulsory Bodies 79). Perhaps, Kafer suggests, the most
basic manifestation of [compulsory able-bodiedness] is the cultural assumption of
able-bodiedness (Compulsory Bodies 80). For those whose disabilities allow them
to pass as nondisabled, the compulsory nature of able-bodiedness throws suspicion on
their desire to identify as disabledunder a system of compulsory able-bodiedness,
why identify as disabled if you can pass? (Kafer, Compulsory Bodies 80).
372 Kristen Harmon

workS Cited
About Schmidt. Directed by Alexander Payne. New Line Cinema, 2002.

Aguilera, Raymond J. Disability and Delight: Staring Back at the Devotee Community.
Sexuality and Disability 18.4 (2000): 25561.
Aguilera, Raymond J. et al. Admirers: Devotees, Pretenders, Wannabes and . . . Race.
Bent: A Journal of CripGay Voices (March 2004). <www.bentvoices.org/bentvoices/
admirers.htm>.
Ahmed, Sara. Queer Phenomenology: Orientations, Objects, Others. Durham: Duke Uni-
versity Press, 2006.
Allen, James, Hilton Als, John Lewis, and Leon F. Litwack. Without Sanctuary: Lynching
Photography in America. Santa Fe: Twin Palms, 2000.
Amato, Toni. Would I Dare? Nestle, Howell, and Wilchins, GenderQueer 22327.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders,
DSM- TR. 4th ed. Arlington, VA: American Psychiatric Publishing, Inc., 2000.
AmericansIV-with Disabilities Act. 1990. <http://www.ada.gov/archive/adastat91.htm>.
Amundson, Ron. Disability, Handicap, and the Environment. Journal of Social Philoso-
phy 23.1 (1992): 10518.
Aston, Maxine. Aspergers in Love: Couple Relationships and Family Affairs. Philadelphia:
Jessica Kingsley, 2003.
Autism Resource Foundation. Frequently Asked Questions about AbA. <http://www
.autismresourcefoundation.org/info/info.ABA.html>.
Bahan, Ben, Robert Hoffmeister, and Harlan Lane. A Journey Into the DEAF- WORLD. San
Diego: Dawn Sign, 1996.
Barnes, Djuna. Nightwood. 1936. New York: New Directions, 1961.
Baron-Cohen, Simon. Is Aspergers Syndrome/High-Functioning Autism Necessarily a
Disability? 5 January 2000. <http://www.larry-arnold.info/Neurodiversity/Mission/
disability.htm>.
. Mindblindness: An Essay on Autism and Theory of Mind. Cambridge: Mit Press,
1995.
Barounis, Cynthia. Cripping Heterosexuality, Queering Able-Bodiedness: Murderball,
Brokeback Mountain and the Contested Masculine Body. Journal of Visual Culture
8.1 (2009): 5475.
Barr, Martin W. Some Notes on Asexualization; With a Report of Eighteen Cases. Jour-
nal of Nervous and Mental Disease 51.3 (1920): 23141.
Bauman, Dirksen. Audism: Exploring the Metaphysics of Oppression. Journal of Deaf
Studies and Deaf Education 9.2 (2004): 23946.
Beatie, Thomas. Labor of Love: Is Society Ready for This Pregnant Husband? Advocate
(April 2008). <http://www.advocate.com/article.aspx?id=22217>.
Becker, Gaylene. Disrupted Lives: How People Create Meaning in a Chaotic World. Berke-
ley: University of California Press, 1997.
Bend It Like Beckham. Directed by Gurinder Chadha. Fox Searchlight Pictures, 2002.
Bentley, Toni. The Surrender: An Erotic Memoir. New York: Harper Perennial, 2005.
Berlant, Lauren. Love, A Queer Feeling. Homosexuality and Psychoanalysis. Ed. Tim
Dean and Christopher Lane. Chicago: University of Chicago Press, 2001. 43252.
Berlant, Lauren, and Michael Warner. Sex in Public Critical Inquiry 24.2 (1998): 54766.
Berrios, G. E., and N. Kennedy. Erotomania: A Conceptual History. History of Psychia-
try 13 (2002): 381400.
Bersani, Leo. The Freudian Body: Psychoanalysis and Art. New York: Columbia Univer-
sity Press, 1986.
. Fr-oucault and the End of Sex. Is the Rectum a Grave? And Other Essays. Chi-
cago: University of Chicago Press, 2010. 13338.
. Homos. Cambridge: Harvard University Press, 1995.
. Is the Rectum a Grave? 1987. Is the Rectum a Grave? And Other Essays. Chicago:
University of Chicago Press, 2010. 330.
. Sociality and Sexuality. 2000. Is the Rectum a Grave? And Other Essays. Chicago:
University of Chicago Press, 2010. 10219.
Brub, Michael. Foreword. Claiming Disability. By Simi Linton. New York: nyu Press,
1998. viixi.
Besnier, Niko. Polynesian Gender Liminality through Time and Space. Third Sex, Third
Gender: Beyond Sexual Dimorphism in Culture and History. Ed. Gilbert Herdt. New
York: Zone, 1996. 285328.
Bettelheim, Bruno. The Empty Fortress: Infantile Autism and the Birth of the Self. New York:
The Free Press, 1967.
Bhabha, Homi. The Location of Culture. New York: Routledge, 1994.
374 Works Cited

Bill to Unsex Morons Gains Citys Support. Chicago Daily Tribune 4 February 1937: 12.
Block, Pamela. Sexuality, Fertility, and Danger: Twentieth-Century Images of Women
with Cognitive Disabilities. Sexuality and Disability 18.4 (2000): 23954.
Bolus, Sonya. Loving Outside Simple Lines. Nestle, Howell, and Wilchins, GenderQueer
11319.
Boon, Marcus. The Road of Excess: A History of Writers on Drugs. Cambridge: Harvard
University Press, 2005.
Boone, Joseph. Libidinal Currents: Sexuality and the Shaping of Modernism. Chicago: Uni-
versity of Chicago Press, 1998.
Brownworth, Victoria A., and Susan Raffo, eds. Restricted Access: Lesbians on Disability.
Seattle: Seal, 1999.
Bruno, Richard L. Devotees, Pretenders, and Wannabes: Two Cases of Factitious Dis-
ability Disorder. Sexuality and Disability 15.4 (1997): 24360.
Bullough, Vern L. Science in the Bedroom: A History of Sex Research. New York: Basic
Books, 1995.
Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. New York: Rout-
ledge, 1990.
. Undoing Gender. New York: Routledge, 2004.
Callen, Michael, and Richard Berkowitz. How to Have Sex in an Epidemic: One Approach.
New York: News from the Front Publications, 1983.
Campbell, Fiona Kumari. Contours of Ableism: The Production of Disability and Abledness.
New York: Palgrave, 2009.
Campbell, Sue, Letitia Meynell, and Susan Sherwin, eds. Embodied Agency. University
Park: Penn State University Press, 2009.
Chapelle, P. A., J. Durand, and P. Lacert. Penile Erection Following Complete Spinal Cord
Injury in Man. British Journal of Urology 52 (1980): 21619.
Chase, Cheryl. Affronting Reason. Looking Queer: Body Image and Identity in Lesbian,
Bisexual, Gay, and Transgender Communities. Ed. Dawn Atkins. New York: Harring-
ton Park, 1998. 20519.
. Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political
Activism. GLQ: A Journal of Lesbian and Gay Studies 4.2 (1998): 189211.
. Surgical Process Is Not the Answer to Intersexuality. Dreger, Intersex in the Age
of Ethics 14759.
Chen, Mel Y. Toxic Animacies, Inanimate Affections. GLQ: A Journal of Lesbian and Gay
Studies 17.2 (2011): 26586.
Chesser, Eustace. Love without Fear: How to Achieve Sex Happiness in Marriage. New
York: Signet, 1947.
Child, Margaret, and Richard King. Overgrounds Manifesto. OverGround 2.2 (1992): 4.
<http://www.overground.be/policy.php?article=337&lan=en>.
Childs, Donald J. Modernism and Eugenics: Woolf, Eliot, Yeats, and the Culture of Degen-
eration. Cambridge: Cambridge University Press, 2001.
Childs, J. Rives. Casanoviana: An Annotated World Bibliography of Jacques Casanova de
Seingalt and of Works Concerning Him. Vienna: Nebehay, 1956.
Works Cited 375

Chivers, Sally. Public Properties: The TransCanadian Terry Fox. Unpublished Paper.
Delivered at TransCanada Two Conference. Guelph University: 1114 October 2007.
Clare, Eli. Exile and Pride: Disability, Queerness, and Liberation. Cambridge: South End
Press, 1999.
. Gawking, Gaping, Staring. GLQ: A Journal of Lesbian and Gay Studies 9.12
(2003): 25761.
. Stolen Bodies, Reclaimed Bodies: Disability and Queerness. Public Culture 13.3
(2001): 35965.
Clifford, James. Introduction: Partial Truths. Writing Culture: The Poetics and Politics of
Ethnography. Ed. James Clifford and George E. Marcus. Berkeley: University of Cali-
fornia Press, 1986. 126.
Colker, Ruth. Pregnant Men: Practice, Theory, and the Law. Bloomington: Indiana Uni-
Colligan, Sumi. Why the Intersex Shouldnt Be Fixed: Insights from Queer Theory and
Disability Studies. Smith and Hutchinson 4560.
Collins, Patricia Hill. Black Sexual Politics: African Americans, Gender, and the New
Racism. New York: Routledge, 2004.
Comay, Rebecca. Perverse History: Fetishism and Dialectic in Walter Benjamin. Re-
search in Phenomenology 29 (1999): 5162.
Cooper, Al, ed. Sex and the Internet: A Guidebook for Clinicians. New York: Brunner-
Routledge, 2002.
Corbin, Alain. Charting the Cultural History of the Senses. 2004. Empire of the Senses:
The Sensual Culture Reader. Ed. David Howe. New York: Berg, 2005. 12842.
Crimp, Douglas. How to Have Promiscuity in an Epidemic. AIDS: Cultural Analysis, Cul-
tural Activism. Ed. Crimp. Cambridge: Mit Press, 1988. 23671.
Crow, Liz. Including All of Our Lives: Renewing the Social Model of Disability. Explor-
ing the Divide: Illness and Disability. Ed. Colin Barnes and Geof Mercer. Leeds: Dis-
ability Press, 1996. 5573.
Davidson, Michael. Concerto for the Left Hand: Disability and the Defamiliar Body. Ann
Arbor: University of Michigan Press, 2008.
Davidson, Robert J. dSd Debates: Social Movement Organizations Framing Debates
Surrounding the Term Disorders of Sexual Development. Liminalis: Journal for Sex/
Gender Emancipation and Resistance (2009): 6080.
Davies, Dominic. Sharing Our Stories, Empowering Our Lives: Dont Dis Me! Sexuality
and Disability 18.3 (2000): 17986.
Davis, Katherine Bement. Factors in the Sex Life of Twenty-Two Hundred Women. New
York: Harper, 1929.
Davis, Lennard J. Bending Over Backwards: Disability, Dismodernism, and Other Difficult
Positions. New York: nyu Press, 2002.
, ed. The Disability Studies Reader. New York: Routledge, 1997.
. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso, 1995.
. Obsession: A History. Chicago: University of Chicago Press, 2008.
376 Works Cited

Dawson, Michelle. Bettelheims Worst Crime: Autism and the Epidemic of Irresponsi-
bility. 9 September 2003. <http://www.sentex.net/~nexus23/md_01.html>.
Deaf-WannaBee Internet Discussion Group. Yahoo Groups. 16 May 2000present. <http://
groups.yahoo.com/group/Deaf-Wannabee/messages>.
de Certeau, Michel. The Practice of Everyday Life. Trans. Steven Rendall. Berkeley: Uni-
versity of California Press, 1984.
Delany, Samuel R. Times Square Red, Times Square Blue. New York: nyu Press, 1999.
de Lauretis, Teresa. Queer Texts, Bad Habits, and the Issue of a Future. GLQ: A Journal
of Lesbian and Gay Studies 17.2 (2011): 24363.
Deleuze, Gilles. Logique du Sens. Paris: ditions de Minuit, 1969.
DEmilio, John. Capitalism and Gay Identity. 1983. The Lesbian and Gay Studies Reader.
Ed. Henry Abelove, Michle Aina Barale, and David Halperin. New York: Routledge,
1993. 46776.
DEmilio, John, and Estelle B. Freedman. Intimate Matters: A History of Sexuality in
America. New York: Harper and Row, 1988.
Desjardins, Michel. Le Jardin dOmbres: La Potique et la Politique de la Rducation So-
ciale. Sainte-Foy: Presses de lUniversit du Qubec, 2002.
. Tabou Sexuel et Changement Culturel: Le Point de Vue et les Attitudes des Par-
ents. Revue Francophone de la Dficience Intellectuelle 16.2 (2005): 4962.
Dickens, Charles. A Christmas Carol. 1843. The Christmas Books, Volume 1. Harmonds-
worth, UK: Penguin, 1985.
Diller, Matthew. Judicial Backlash, the AdA, and the Civil Rights Model of Disability.
Krieger, Backlash Against the ADA 6297.
Dixon, Dwight. An Erotic Attraction to Devotees. Sexuality and Disability 6.1 (1983):
319.
Dixon, Melvin. Ill Be Somewhere Listening For My Name. Sojourner: Black Gay Voices
in the Age of AIDS. Ed. B. Michael Hunter. New York: Other Countries, 1993. 199203.
Dorcus, Roy M., and Harry W. Case. Mental Hygiene Problems in Industry. Review of
Educational Research 13.5 (1943): 48589.
Dougherty, Dawn. A Safe Trip Home. Nestle, Howell, and Wilchins, GenderQueer 220
22.
Downing, Lisa. The Measure of Sexual Dysfunction: A Plea for Theoretical Limitless-
ness. Transformations: Online Journal of Region, Culture, and Society 8 (2004): <http://
www.transformationsjournal.org/journal/issue_08/article_02.shtml>.
Dreger, Alice Domurat. Ambiguous Sexor Ambivalent Medicine? Ethical Issues in the
Treatment of Intersexuality. Hastings Center Report 28.3 (1998): 2436.
, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group,
1999.
Dreger, Alice Domurat, and April M. Herndon. Progress and Politics in the Intersex
Rights Movement: Feminist Theory in Action. GLQ: A Journal of Lesbian and Gay
Studies 15.2 (2009): 199224.
DuCille, Ann. The Coupling Convention: Sex, Text, and Tradition in Black Womens Fiction.
New York: Oxford University Press, 1993.
Works Cited 377

Duggan, Lisa. Sapphic Slashers: Sex, Violence, and American Modernity. Durham: Duke
. The Twilight of Equality: Neoliberalism, Cultural Politics, and the Attack on Democ-
racy. Boston: Beacon, 2003.
Duke, Lynne, and DeNeen L. Brown. Tapping into the Secrets of the Stall: Experts Say
Anonymous Sex in Public Places Is a Compulsive Behavior. Washington Post 30 Au-
gust 2007. <http://www.washingtonpost.com/wp-dyn/content/article/2007/08/29/A
R2007082902435.html>.
Duncan, Kath. The Amorous Adventures of an Amputee Love Goddess. HQ Magazine
62 (January-February 1999): 1169.
Duncan, Kath, and Gerard Goggin. Something in Your BellyFantasy, Disability,
and Desire in My One-Legged Dream Lover. Disability Studies Quarterly 22.4 (2002).
<http://www.dsq-sds.org/article/view/377/501>.
Dupras, Andr. La Sexualit des Personnes Handicapes: Interdite ou Permise? lar-
gir les Horizons: Perspectives Scientifiques sur LIntgration Sociale. Ed. Anne Hbert,
Suzanne Dor, and Ingrid de Lafontaine. Sainte-Foy: ditions MultiMondes, 1994.
18590.
. La Dsexualisation de la Personne Handicape Mentale ou le Syndrome de For-
rest Gump. Revue Europenne du Handicap Mental 5.18 (1998): 4752.
. La strilisation de la personne handicape mentale comme processus de sacral-
isation. Psychosomatique et Sexologie 29 (2001): 90812.
Durham, Wesley T. The Rules-based Process of Revealing/Concealing the Family Plan-
ning Decision of Voluntary Child-free Couples: A Communication Privacy Manage-
ment Perspective. Communication Studies 59 (2008): 13247.
Dyer, Isadore. Discussion. Southern Medical Journal 3 (1910): 2024.
Ebert, Roger. Review of Murderball. RogerEbert.com. 22 July 2005. <http://rogerebert
.suntimes.com/apps/pbcs.dll/article?AID=/20050721/REVIEWS/50607001>.
Eckert, Lena. Diagnosticism: Three Cases of Medical Anthropological Research into
Intersexuality. Holmes 4171.
Edelman, Lee. Ever After. South Atlantic Quarterly 106.3 (2007): 47076.
. The Future Is Kid Stuff: Queer Theory, Disidentification, and the Death Drive.
Narrative 6.1 (January 1998): 1830.
. No Future: Queer Theory and the Death Drive. Durham: Duke University Press,
2004.
Edgerton, Robert B. Mental Retardation. Cambridge: Harvard University Press, 1979.
Eliot, T. S. The Complete Poems and Plays, 19091950. New York: Harcourt, 1962.
Elliott, Carl. A New Way to be Mad. Atlantic Monthly (December 2000): 7284.
Elman, R. Amy. Disability Pornography: The Fetishization of Womens Vulnerabilities.
Violence Against Women 3.3 (1997): 25770.
Encyclopedia of Unusual Sex Practices. Advertisement. <www.odd-sex.com/index.htm>.
European Charter for Persons with Autism. 9 May 1996. <http://www.autism-help.org/
adults-autism-european-charter.htm>.
Fahner, Holly. Is There a Casanova Gene? Glamour (June 2006): 138.
378 Works Cited

Faulkner, William. The Sound and the Fury. 1929. New York: Vintage, 1984.
Feder, Ellen K. Imperatives of Normality: From Intersex to Disorders of Sex Develop-
ment. GLQ: A Journal of Lesbian and Gay Studies 15.2 (2009): 22547.
Ferguson, Roderick A. Aberrations in Black: Toward a Queer of Color Critique. Minneapo-
lis: University of Minnesota Press, 2004.
Fernald, Walter. Possibilities of the Colony. Proceedings of the National Conference of
Charities and Correction at the Thirty-fourth Annual Session Held in the City of Min-
neapolis, Minn., June 12th to 19th, 1907. Ed. Alexander Johnson. Indianapolis: Press of
Wm. B. Burford, 1907. 41118.
Fine, Michelle, and Adrienne Asch, eds. Women with Disabilities: Essays in Psychology,
Culture, and Politics. Philadelphia: Temple University Press, 1988.
Finger, Anne. Forbidden Fruit. New Internationalist 233 (1992): 810.
Finkelstein, Naomi. The Only Thing You Have to Do Is Live. GLQ: A Journal of Lesbian
and Gay Studies 9.12 (2003): 30719.
Fiol-Matta, Licia. A Queer Mother for the Nation: The State and Gabriela Mistral. Minne-
apolis: University of Minnesota Press, 2002.
Fleche, Anne. Echoing Autism: Performance, Performativity, and the Writing of Donna
Williams. Tulane Drama Review 41.3 (1997): 10721.
Floyd, Kevin. The Reification of Desire: Toward a Queer Marxism. Minneapolis: University
of Minnesota Press, 2009.
Foucault, Michel. Fearless Speech. Ed. Joseph Pearson. Los Angeles: Semiotext(e), 2001.
. The History of Sexuality, Volume 1: An Introduction. Trans. Robert Hurley. New
York: Vintage, 1978.
. La Volont de Savoir: Histoire de la Sexualit, Tome 1. Paris: Gallimard, 1976.
Freud, Sigmund. Dora: An Analysis of a Case of Hysteria. New York: Simon and Schus-
ter, 1963.
. Studies in Hysteria. 1895. New York: Basic Books, 2000.
. Three Case Histories. New York: Collier Books, 1963.
Frith, Uta. Autism: Explaining the Enigma. Oxford and Cambridge: Basil Blackwell, 1989.
Fromm, Erich. The Art of Loving. 1956. New York: Bantam, 1963.
Fuck the Disabled. Directed by Eli Kabillio. Mad Dog Films, Inc., 2001.
Garland-Thomson, Rosemarie. The Cultural Logic of Euthanasia: Sad Fancyings in
Herman Melvilles Bartleby. American Literature 76.4 (2004): 777806.
. Extraordinary Bodies: Figuring Physical Disability in American Culture and Lit-
erature. New York: Columbia University Press, 1997.
. Integrating Disability, Transforming Feminist Theory. National Womens Studies
Association Journal 14.3 (2002): 132.
. The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.
Snyder, Brueggemann, and Garland-Thomson 5675.
. Seeing the Disabled: Visual Rhetorics of Disability in Popular Photography.
Longmore and Umansky, The New Disability History 33574.
. Shape Structures Story: Fresh and Feisty Stories about Disability. Narrative 15.1
(2007): 11323.
Works Cited 379

Gateaux-Mennecier, Jacqueline. La Dbilit Lgre, Une Construction Idologique. Paris:
ditions du cnRS, 1990.
Geertz, Clifford. The Interpretation of Cultures. New York: Basic Books, 1973.
Giami, Alain. Strilisation et sexualit des personnes handicapes mentales. Les Enjeux
de la Strilisation. Ed. Alain Giami and Henri Leridon. Paris: Inserm, 2000. 27386.
Giami, Alain, Chantal Humbert-Viveret, and Dominique Laval. LAnge et la Bte: Repr-
sentations de la Sexualit des Handicaps Mentaux par les Parents et les ducateurs.
Paris: Les Publications du ctneRhi, 1983.
Gibbs, C. E. Sexual Behavior and Secondary Sexual Hair in Female Patients with Manic
Depressive Psychoses and the Relation of These Factors to Dementia Praecox. Ameri-
can Journal of Psychiatry 4 (1924): 4156.
Giddens, Anthony. The Transformation of Intimacy: Sexuality, Love and Eroticism in Mod-
ern Societies. Stanford: Stanford University Press, 1992.
Gilbert, Sandra M., and Susan Gubar. No Mans Land: The Place of the Woman Writer in
the Twentieth Century: Volume 2, Sex Changes. New Haven: Yale University Press, 1989.
Gilroy, Paul. The Black Atlantic: Modernity and Double Consciousness. Cambridge: Har-
vard University Press, 1993.
Gipps, Richard, ed. Autism and Intersubjectivity. Special issue of Philosophy, Psychiatry,
and Psychology 11.3 (2004).
Goldsby, Jacqueline. A Spectacular Secret: Lynching in American Life and Literature. Chi-
cago: University of Chicago Press, 2006.
Goodman, Nelson. Ways of World Making. Indianapolis: Hackett, 1978.
Grandin, Temple. Animals in Translation: Using the Mysteries of Autism to Decode Animal
Behavior. New York: Scribner, 2004.
. Emergence: Labeled Autistic. New York: Warner, 1996.
. Thinking in Pictures and Other Reports from My Life with Autism. New York: Vin-
tage, 1995.
Grealy, Lucy. In the Realm of the Senses. Nerve 25 October 2001. <http://www.nerve
.com/dispatches/Grealy/RealmOfTheSenses/>.
Gregson, Ian. The Devotee Issue: Part TwoThe Opposing View. Amputee-Online. Sep-
tember 2000. <amputee-online.com/amputation/sept00/sept00wissues.html>.
Grillo, Trina, and Stephanie M. Wildman. Obscuring the Importance of Race: The Impli-
cations of Making Comparisons between Racism and Sexism (or Other Isms). Criti-
cal White Studies: Looking Behind the Mirror. Ed. Richard Delgado and Jean Stefancic.
Philadelphia: Temple University Press, 1997. 61926.
Guldin, Anne. Claiming Sexuality: Mobility-Impaired People and Sexualities in Ameri-
can Culture. Unpublished Master of Arts Paper. Department of Anthropology, Uni-
versity of Iowa, 1999.
. Self-Claiming Sexuality: Mobility Impaired People in American Culture. Sexu-
ality and Disability 18.4 (2000): 23338.
Guter, Bob. How to Find Love with a Fetishist: Bob Guter Interviews Alan Sable. Guter
and Killacky 6581.
380 Works Cited

Guter, Bob, and John R. Killacky, eds. Queer Crips: Disabled Gay Men and Their Stories.
New York: Harrington Park, 2004.
Haag, Pamela. In Search of the Real Thing: Ideologies of Love, Modern Romance, and
Womens Sexual Subjectivity in the United States, 19201940. American Sexual Poli-
tics: Sex, Gender, and Race since the Civil War. Ed. John C. Fout and Maura Shaw Tan-
tillo. Chicago: University of Chicago Press, 1993. 16191.
Hagglund, Bette. The Fascination AttractionIts Okay. Fascination. 1999. <users.erols.
com/rvandyke/info.htm>.
Hahn, Harlan. Accommodations and the AdA: Unreasonable Bias or Biased Reasoning?
Krieger, Backlash Against the ADA 2661.
. The Social Component of Sexuality and Disability: Some Problems and Propos-
als. Sexuality and Disability 4 (1981): 22033.
Halberstam, Judith. F2M: The Making of Female Masculinity. The Lesbian Postmodern.
Ed. Laura Doan. New York: Columbia University Press, 1994. 21028.
. In a Queer Time and Place. New York: nyu Press, 2005.
. Shame and White Gay Masculinity. Social Text 8485 (2005): 21933.
Hale, Grace Elizabeth. Making Whiteness: The Culture of Segregation in the South, 1890
1940. New York: Pantheon, 1998.
Hall, Kim Q., ed. Feminist Disability Studies. Special issue of National Womens Studies
Association Journal 14.3 (2002).
Hamilton, Toby. Sexuality in Deaf Blind Persons. Sexuality and Disability 2.3 (1979):
23846.
Harper, Phillip Brian. The Evidence of Felt Intuition: Minority Experience, Everyday
Life, and Critical Speculative Knowledge. Black Queer Studies: A Critical Anthology.
Ed. E. Patrick Johnson and Mae G. Henderson. Durham: Duke University Press, 2005.
10623.
Hastrup, Kirsten. The Ethnographic Present: A Reinvention. Cultural Anthropology 5
(1990): 4561.
Hawlbecker, Hale. Who Did This to You? Dreger, Intersex in the Age of Ethics 11013.
Hermaphrodites Speak! Directed by Cheryl Chase. Video. Intersex Society of North
America, 1997.
Herndon, April. More Evidence People Did Well without Surgery! April Herndons Blog.
19 October 2005. <http://www.isna.org/node/971>.
Herring, Scott. Queering the Underworld: Slumming, Literature, and the Undoing of Les-
bian and Gay History. Chicago: University of Chicago Press, 2007.
History of Footwear: Foot Fetishism and Shoe Retifism. Department of Podiatry, Curtin
University of Technology, Perth, Western Australia. December 2004. <http://podiatry
.curtin.edu.au/fetish.html>.
Hockenberry, John. Moving Violations: War Zones, Wheelchairs, and Declarations of Inde-
pendence. New York: Hyperion, 1995.
Holmes, Morgan, ed. Critical Intersex. Farnham Surrey, UK: Ashgate, 2009.
Holstein, James, and Jaber Gubrium. The Active Interview. Qualitative Research: Theory,
Method and Practice. Ed. David Silverman. Thousand Oaks, CA: Sage, 2004. 14061.
Works Cited 381

Hooper, Edward L. New Insights. The Ragged Edge: The Disability Experience from the
Pages of the First Fifteen Years of The Disability Rag. Ed. Barrett Shaw. Louisville: Advo-
cado Press, 1994. 7881.
Hornaday, Ann. Embodying 69 in the Hair and Now: The Makers of Taking Woodstock
Ensure Hirsute Historical Accuracy. Washington Post 28 August 2009. <http://www
.washingtonpost.com/wp-dyn/content/article/2009/08/27/AR2009082704141.html>.
Huffer, Lynne. Mad for Foucault: Rethinking the Foundations of Queer Theory. New York:
Columbia University Press, 2009.
Hunt, William A. Carney Landis: 18971962. American Journal of Psychology 75.3 (1962):
5069.
Hurston, Zora Neale. Seraph on the Suwanee. 1948. New York: Harper, 1991.
I Am a Sex Addict. Directed by Caveh Zahedi. iFc Films, 2005.
Ingram, Richard. Reports from the Psych Wars. Unfitting Stories: Narrative Approaches
to Disease, Disability, and Trauma. Ed. Valerie Raoul, Connie Canam, Angela Hender-
son, and Carla Paterson. Waterloo: Wilfrid Laurier University Press, 2007. 23744.
Intersex Society of North America (iSnA). Whats the History behind the Intersex Rights
Movement? <http://www.isna.org/faq/history>.
Irigaray, Luce. This Sex Which Is Not One. Trans. Catherine Porter. Ithaca: Cornell Uni-
J. Devotees: Are They Necessarily Sexual Harassers? OverGround. 4 February 2001.
<http://www.overground.be/features.php?page=THE&article=73&lan=en>.
. Twins: An Exploration of the Morality of the Feelings of Devotees. Over-
Ground. 4 February 2001. <http://www.overground.be/features.php?page=THE&arti
cle=81&lan=en>.
. W. and K.: A Complementary Couple. OverGround. 4 February 2001. <http://
www.overground.be/features.php?page=PEO&article=55&lan=en>.
. Why Devotees Sometimes Behave Badly. OverGround. 4 February 2001. <http://
www.overground.be/features.php?page=THE&article=86&lan=en>.
Jackson, Michael. Introduction: Phenomenology, Radical Empiricism, and Anthropo-
logical Critique. Things as They Are: New Directions in Phenomenological Anthro-
pology. Ed. Jackson. Bloomington: Indiana University Press, 1996. 150.
Jacobs, Barbara. Loving Mr. Spock: Understanding an Aloof Lover. New York: Penguin,
2003.
Jain, Sarah. The Prosthetic Imagination: Enabling and Disabling the Prosthesis Trope.
Science, Technology, and Human Values 24.1 (1999): 3154.
Job, Jennifer. Factors Involved in the Ineffective Dissemination of Sexuality Information
to Individuals Who Are Deaf or Hard of Hearing. American Annals of the Deaf 149.3
(2004): 26473.
John. Sightings. OverGround. 4 February 2001. <www.overground.be/features/people/
sight.html>.
Johnson, Harriet McBryde. The Disability Gulag. New York Times Magazine (23 Novem-
ber 2003): 5864.
382 Works Cited

. Too Late to Die Young: Nearly True Tales from a Life. New York: Henry Holt, 2005.
Joyce, James. Ulysses. 1922. New York: Random House, 1986.
Junior. Directed by Ivan Reitman. Universal Studios, 1994.
Kafer, Alison. Amputated Desire, Resistant Desire: Female Amputees in the Devotee
Community. Disability World 3 (2000). <www.disabilityworld.org/June-
Women/SDS.htm>. July2000/
. Compulsory Bodies: Reflections on Heterosexuality and Able-bodiedness,
Journal of Womens History 15.3 (2003): 7789.
. Inseparable: Constructing Gender Through Disability in the Amputee-Devotee
Community. Smith and Hutchison 10718.
Kalichman, S. C. et. al. Sexual sensation seeking: Scale development and predicting AidS-
risk behavior among homosexually active men. Journal of Personality Assessment 62
(1994): 38597.
Katyal, Sonia K. Sexuality and Sovereignty: The Global Limits and Possibilities of Law-
rence. William and Mary Bill of Rights Journal 14 (2006): 142992.
Kaufman, Miriam, Cory Silverberg, and Fran Odette. The Ultimate Guide to Sex and Dis-
ability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness. San Fran-
cisco: Cleis, 2003.
Kempton, Winifred and Emily Kahn. Sexuality and People with Intellectual Disabilities:
A Historical Perspective. Sexuality and Disability 9 (1991): 93111.
Kershaw, Sarah. For Teenagers, Hello Means How about a Hug? New York Times, 27
May 2009. <http://www.nytimes.com/2009/05/28/style/28hugs.html>.
Kessler, Suzanne. Lessons from the Intersexed. New Brunswick: Rutgers University Press,
1998.
Kim. As Is. Dreger, Intersex in the Age of Ethics 99100.
King, Thomas. Borders. One Good Story, That One. Toronto: HarperCollins, 1993.
Kirshenblatt-Gimblett, Barbara. Destination Culture: Tourism, Museums, and Heritage.
Berkeley: University of California Press, 1998.
Kleege, Georgina. Blind Rage: Letters to Helen Keller. Washington, DC: Gallaudet Univer-
sity Press, 2006.
Koyama, Emi, and Lisa Weasel. From Social Construction to Social Justice: Transforming
How We Teach about Intersexuality. Womens Studies Quarterly 30.34 (2002): 16978.
Krieger, Linda, ed. Backlash against the ADA: Reinterpreting Disability Rights. Ann Arbor:
University of Michigan Press, 2003.
. Introduction. Krieger, Backlash Against the ADA 125.
Laden, Vicki A., and Gregory Schwartz. Pyschiatric Disabilities, the Americans with Dis-
abilities Act, and the New Workplace Violence Account. Krieger, Backlash Against
the ADA 125.
Lamm, Nomy. Private Dancer: Evolution of a Freak. Brownworth and Raffo 15261.
Landis, Carney, and M. Marjorie Bolles. The Personality and Sexuality of the Physically
Handicapped Woman. New York: Paul B. Hoeber, 1942.
Langan, Celeste. Mobility Disability. Public Culture 13.3 (2001): 45984.
Works Cited 383

Laqueur, Thomas. Solitary Sex: A Cultural History of Masturbation. New York: Zone, 2003.
Lawson, Wendy. Life Behind Glass: A Personal Account of Autism Spectrum Disorder. Phila-
delphia: Jessica Kingsley, 2000.
. Sex, Sexuality, and the Autism Spectrum. Philadelphia: Jessica Kingsley, 2005.
Lee, Peter A., et al. Consensus Statement on Management of Intersex Disorders. Pedi-
atrics: Official Journal of the American Academy of Pediatrics 118.2 (2006): 488500.
Lvi-Strauss, Claude. La Potire Jalouse. Paris: Plon, 1985.
Lewis, Bradley. A Mad Fight: Psychiatry and Disability Activism. Davis, The Disability
Studies Reader 16076.
Lingis, Alphonso. The Physiology of Art. The Prosthetic Impulse: From a Posthuman
Present to a Biocultural Future. Ed. Marquard Smith and Joanne Morra. Cambridge:
Mit Press, 2006. 7389.
Linton, Simi. Claiming Disability: Knowledge and Identity. New York: nyu Press, 1998.
. My Body Politic: A Memoir. Ann Arbor: University of Michigan Press, 2006.
Lock, Margaret, and Nancy Scheper-Hughes. A Critical-Interpretive Approach in Medi-
cal Anthropology: Rituals and Routines of Discipline and Dissent. Medical Anthro-
pology: Contemporary Theory and Method. Ed. Thomas Johnson and Carolyn Sargent.
New York: Praeger, 1990. 4772.
Longmore, Paul K. Conspicuous Contribution and American Cultural Dilemmas: Tele-
thon Rituals of Cleansing and Renewal. Mitchell and Snyder, The Body and Physical
Difference 13458.
. Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple Uni-
Longmore, Paul K., and Lauri Umansky, eds. The New Disability History: American Per-
spectives. New York: nyu Press, 2000.
Lowenstein, L. F. Fetishes and Their Associated Behavior. Sexuality and Disability 20.2
(2002): 13547.
Luczak, Raymond, ed. Eyes of Desire: A Deaf Gay and Lesbian Reader. Boston: Alyson
Books, 1993.
Luibhid, Eithne. Entry Denied: Controlling Sexuality at the Border. Minneapolis: Univer-
sity of Minnesota Press, 2003.
Lurie, Samuel. Loving You Loving Me: Tranny/Crip/Queer Love and Overcoming Shame
in Relationship. Guter and Killacky 8386.
Malet, Lucas. The History of Sir Richard Calmady. 1901. Ed. Talia Schaffer. Birmingham:
University of Birmingham Press, 2003.
Marcus, George E., and Michael M. J. Fischer. Anthropology as Cultural Critique: An Exper-
imental Moment in the Human Sciences. Chicago: University of Chicago Press, 1996.
Marcus, Jane. Laughing at Leviticus: Nightwood as Womans Circus Epic. Silence and
Power: A Reevaluation of Djuna Barnes. Ed. Mary Lynn Broe. Carbondale: Southern
Illinois University Press, 1991. 22150.
Marcuse, Herbert. The Affirmative Character of Culture. Negations: Essays in Critical
Theory. Ed. Douglas Kellner. Boston: Beacon, 1968. 88133.
384 Works Cited

Markovitz, Jonathan. Legacies of Lynching: Racial Violence and Memory. Minneapolis:
University of Minnesota Press, 2004.
Martin, Emily. Bipolar Expeditions: Mania and Depression in American Culture. Princeton:
Princeton University Press, 2007.
Masson, Jeffrey Massaieff. Assault on Truth: Freuds Suppression of the Seduction Theory.
New York: HarperCollins, 1984
Matta, Christina. Ambiguous Bodies and Deviant Sexualities: Hermaphrodites, Homo-
sexuality, and Surgery in the United States, 18501904. Perspectives in Biology and
Medicine 48.1 (2005): 7483.
McGeer, Victoria. Autistic Self-Awareness. Philosophy, Psychiatry, and Psychology 11.3
(2004): 23551.
McRuer, Robert. As Good As It Gets: Queer Theory and Critical Disability. GLQ: A Jour-
nal of Lesbian and Gay Studies 9.12 (2003): 79105.
. Crip Theory: Cultural Signs of Queerness and Disability. New York: nyu Press,
2006.
McRuer, Robert, and Abby L. Wilkerson, eds. Desiring Disability: Queer Theory Meets Dis-
ability Studies. Special issue of GLQ: A Journal of Lesbian and Gay Studies 9.12 (2003).
Meekosha, Helen, and Russell Shuttleworth. Whats So Critical about Critical Disability
Studies? Australian Journal of Human Rights 15.1 (2009): 4776.
Mellody, Pia. Facing Love Addiction: Giving Yourself the Power to Change the Way You Love.
New York: HarperCollins, 1992.
Metzl, Jonathan. Prozac on the Couch: Prescribing Gender in the Era of Wonder Drugs. Dur-
ham: Duke University Press, 2003.
Miller, Heather Lee. Sexologists Examine Lesbians and Prostitutes in the United States,
18401940. National Womens Studies Association Journal 12.3 (2000): 6791.
Miracle. Directed by Gavin OConnor. Walt Disney Video, 2004.
Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Depen-
dencies of Discourse. Ann Arbor: University of Michigan Press, 2000.
, eds. The Body and Physical Difference: Discourses of Disability. Ann Arbor: Uni-
versity of Michigan Press, 1997.
Mollow, Anna. Disability Studies and Identity Politics: A Critique of Recent Theory.
Michigan Quarterly Review 43.2 (2004): 26996.
. When Black Women Start Going on Prozac: Race, Gender, and Mental Illness
in Meri Nana-Ama Danquahs Willow Weep for Me. MELUS 31.3 (2006): 6799.
Money, John. Love and Love Sickness: The Science of Sex, Gender Difference, and Pair-
Bonding. Baltimore: Johns Hopkins University Press, 1980.
Montgomery, Cal. Defining Autistic Lives. Ragged Edge Online. 30 June 2005. <http://
www.ragged-edge-mag.com/reviews/ckmontrubin0605.html>.
Mulvey, Laura. Visual Pleasure and Narrative Cinema. 1975. Feminisms: An Anthology of
Literary Theory and Criticism. Ed. Robyn Warhol and Diane Price Herndl. New Bruns-
wick: Rutgers University Press, 1997. 43848.
Muoz, Jos Esteban. Cruising Utopia: The Then and There of Queer Futurity. New York:
nyu Press, 2009.
Works Cited 385

. Thinking Beyond Antirelationality and Antiutopianism in Queer Critique.
PMLA 121.3 (May 2006): 82526.
Munson, Peggy. Liminal. Nestle, Howell, and Wilchins, GenderQueer 14346.
Murderball. Directed by Dana Adam Shapiro and Henry-Alex Rubin. ThinkFilm Com-
pany, 2005.
Murray, Stephen O. Self Size and Observable Sex. Public Sex/Gay Space. Ed. William L.
Leap. New York: Columbia University Press, 1999. 15586.
Nakken, Craig. The Addictive Personality: Understanding Compulsion in Our Lives. New
York: Harper and Row, 1988.
Nattress, LeRoy William. Amelotasis: Men Attracted to Women who are Amputees. A
Descriptive Study. Diss. Walden University, 1996.
Nestle, Joan. My Woman Poppa. Nestle, Howell, and Wilchins, GenderQueer 17578.
Nestle, Joan, Clare Howell, and Riki Wilchins, eds. GenderQueer: Voices from beyond the
Sexual Binary. Los Angeles: Alyson Books, 2002.
Noll, Steven. Feeble-Minded in Our Midst: Institutions for the Mentally Retarded in the
South, 19001940. Chapel Hill: University of North Carolina Press, 1995.
Norton, Rictor, ed. The Mollies Club, 170910. Homosexuality in Eighteenth-Century
England: A Sourcebook. 1 December 1999. <http://www.rictornorton.co.uk/eighteen/
nedward.htm>.
Nuss, Marcel, ed. Handicaps et Sexualit: Le Livre Blanc. Paris: ditions Dunod, 2008.
OBrien, Mark. Femininity. Bancroft Library, OBrien Papers. University of California
Berkeley.
OBrien, Mark, with Gillian Kendall. How I Became a Human Being: A Disabled Mans
Quest for Independence. Madison: University of Wisconsin Press, 2003.
Oliver, Mike. Politics of Disablement: A Sociological Approach. Basingstoke, UK: Palgrave,
1990.
OToole, Corbett Joan. The View from Below: Developing a Knowledge Base about an
Unknown Population. Sexuality and Disability 18.3 (2000): 20724.
Ouch! Podcast: no. 5. Ouch! . . . Its a Disability Thing. August 2006. <http://www.bbc
.co.uk/ouch/podcast/podcast5.shtml>.
OverGround: A Site for the Disabled and their Admirers, the Devotees and the Wannabes.
2005. <http://www.overground.be>.
Pallasmaa, Juhani. The Eyes of the Skin: Architecture and the Senses. Hoboken: John Wiley,
2007.
Park, Kristin. Choosing Childlessness: Webers Typology of Action and Motives of the
Voluntary Childless. Sociological Inquiry 75 (2005): 372402.
Parsons, Deborah. Djuna Barnes. Horndon, Devon: Northcote, 2003.
Patton, Cindy. Sex and Germs. Boston: South End Press, 1985.
Peele, Stanton, and Archie Brodsky. Love and Addiction. 1975. London: Sphere Books, 1977.
Pfister, Joel. Glamorizing the Psychological: The Politics of the Performances of Mod-
ern Psychological Identities. Inventing the Psychological: Toward a Cultural History of
Emotional Life in America. Ed. Joel Pfister and Nancy Schnog. New Haven: Yale Uni-
versity Press, 1997. 167213.
386 Works Cited

Pintner, Rudolph, Jon Eisenson, and Mildred Stanton. The Psychology of the Physically
Handicapped. New York: F. S. Crofts, 1941.
Plato. The Collected Dialogues. Ed. Edith Hamilton and Huntington Cairns. Princeton:
Princeton University Press, 1973.
Plumb, Cheryl J. Djuna Barness Nightwood: The Original Version and Related Drafts. New
York: Dalkey Archive Press, 1995.
Plummer, Kenneth. Intimate Citizenship: Private Decisions and Public Dialogues. Seattle:
University of Washington Press, 2003.
Pound, Ezra. The Cantos of Ezra Pound. New York: New Directions, 1973.
Powell, Frederick. The Politics of Civil Society: Neoliberalism or Social Left? Bristol: Univer-
sity of Bristol Policy Press, 2007.
Prendergast, Catherine. The Unexceptional Schizophrenic: A Post-Postmodern Intro-
duction. Davis, The Disability Studies Reader 28897.
Preves, Sharon. Intersex and Identity: The Contested Self. New Brunswick: Rutgers Uni-
Price, Margaret. Her Pronouns Wax and Wane: Psychosocial Disability, Autopathog-
raphy, and Counter-Diagnosis. Journal of Literary and Cultural Disability Studies 3.1
(2009): 1134.
Prince-Hughes, Dawn, ed. Aquamarine Blue 5: Personal Stories of College Students with
Autism. New York: Swallow Press, 2002.
. Songs of the Gorilla Nation: My Journey Through Autism. New York: Harmony,
2004.
Prosser, Jay. Second Skins: The Body Narratives of Transsexuality. New York: Columbia
Puar, Jasbir K. Terrorist Assemblages: Homonationalism in Queer Times. Durham: Duke
Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New York:
Columbia University Press, 2007.
Reilly, Philip R. The Surgical Solution: A History of Involuntary Sterilization in the United
States. Baltimore: Johns Hopkins University Press, 1991.
Rembis, Michael A. I Aint Been Reading While on Parole: Experts, Mental Tests, and
Eugenic Commitment Law in Illinois, 18901940. History of Psychology 4.3 (2004):
22547.
Rice, Anne P., ed. Witnessing Lynching: American Writers Respond. New Brunswick: Rut-
gers University Press, 2003.
Rodier, Alain. Le Pari de LIntgration, Tmoignage Sur Dix Annes de Dsin. Victoriaville:
Imprimerie des Bois-Francs, 1988.
Roen, Katrina. Transgender Theory and Embodiment: The Risk of Racial Marginaliza-
tion. Journal of Gender Studies 10.3 (2001): 25363.
Rosenbaum, Betty. Neurotic Tendencies in Crippled Girls. Journal of Abnormal and
Social Psychology 31 (1937): 42329.
Rubin, Gayle. Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality. 1984.
Works Cited 387

The Lesbian and Gay Studies Reader. Ed. Henry Abelove, Michle Aina Barale, and
David Halperin. New York: Routledge, 1993. 344.
Ryan, Joanna, and Frank Thomas. The Politics of Mental Retardation. London: Penguin,
1980.
Ryan, Michael. Secret Life: An Autobiography. New York: Vintage, 1995.
Samuels, Ellen. Critical Divides: Judith Butlers Body Theory and the Question of Dis-
ability. National Womens Studies Association Journal 14.3 (Fall 2002): 5876.
. My Body, My Closet: Invisible Disability and the Limits of Coming-Out Dis-
course. GLQ: A Journal of Lesbian and Gay Studies 9.12 (2003): 23355.
Savage, Dan. Savage Love Column. 7 December 2005. <http://www.avclub.com/articles/
december-72005,1699/>.
Schaffer, Talia. Introduction to The History of Sir Richard Calmady. By Lucas Malet. Ed.
Schaffer. Birmingham: University of Birmingham Press, 2003. ixxxxii.
Scheper-Hughes, Nancy, and Margaret Lock. The Mindful Body: A Prolegomenon to
Future Work in Medical Anthropology. Medical Anthropology Quarterly 11 (1987):
641.
Scholinski, Daphne. The Last Time I Wore a Dress. New York: Riverhead, 1997.
Schwartz, Phil. Identifying, Educating, and Empowering Allies. 2004. <http://www
.autistics.org/library/allies.html>.
Schweik, Susan M. The Ugly Laws: Disability in Public. New York: nyu Press, 2009.
Sedgwick, Eve Kosofsky. Epistemology of the Closet. Berkeley: University of California
Press, 1992.
. Touching Feeling: Affect, Pedagogy, Performativity. Durham: Duke University
Press, 2003.
Sedgwick, Eve Kosofsky, and Adam Frank. Shame in the Cybernetic Fold: Reading Silvan
Tomkins. Shame and Its Sisters: A Silvan Tomkins Reader. Ed. Sedgwick and Frank.
Durham: Duke University Press, 1995. 128.
Seligman, Linda, and Stephanie A. Hardenburg. Assessment and Treatment of Para-
philias. Journal of Counseling and Development 78 (2000): 10713.
Sex and Love Addicts Anonymous. Sex and Love Addicts Anonymous Handbook. Boston:
The Augustine Fellowship, 1986.
. Frequently Asked Questions. <http://www.slaafws.org/node/146>.
Shakespeare, Tom. Disability Rights and Wrongs. New York: Routledge, 2006.
. Disabled Sexuality: Toward Rights and Recognition. Sexuality and Disability
18.3 (2000): 15966.
. The Sexual Politics of Disabled Masculinity. Sexuality and Disability 17.1 (1999):
5364.
Shakespeare, Tom, Kath Gillespie-Sells, and Dominic Davies. The Sexual Politics of Dis-
ability: Untold Desires. New York: Cassell, 1996.
Shanker, Stuart. Autism and the Dynamic Developmental Model of Emotions. Philoso-
phy, Psychiatry, and Psychology 11.3 (2004): 21933.
Shildrick, Margrit. Dangerous Discourses of Disability, Subjectivity and Sexuality. New
York: Palgrave, 2009.
388 Works Cited

. Queering Performativity: Disability after Deleuze. SCAN: Journal of Media Arts
Culture 1.3 (2004). <http://scan.net.au/scan/journal/display.php?journal%20id=36>.
Shuttleworth, Russell P. Disability and Sexuality: Toward a Constructionist Approach to
Access and the Inclusion of Disabled People in the Sexual Rights Movement. Sexuality
Inequalities: Case Studies from the Field. Ed. Niels Teunis and Gilbert Herdt. Berkeley:
University of California Press, 2006. 174207.
. The Pursuit of Sexual Intimacy for Men with Cerebral Palsy. Diss. University
of CaliforniaSan Francisco and Berkeley, 2000.
. The Search for Sexual Intimacy for Men with Cerebral Palsy. Sexuality and Dis-
ability 18.4 (2000): 26382.
. Symbolic Contexts, Embodied Sensitivities, and the Lived Experience of Sexu-
ally Relevant, Interpersonal Encounters for a Man with Severe Cerebral Palsy. Semi-
otics and Dis/Ability: Interrogating Categories of Difference. Ed. Linda Rogers and Beth
Swadener. Albany: Suny, 2001. 7595.
Shuttleworth, Russell P., and Vanessa Gore. Critical Review of Sexuality and Disability
Research since The Sexual Politics of Disability. Unpublished Paper.
Shuttleworth, Russell P., and Linda Mona. Introduction: Toward a Focus on Sexual Ac-
cess in Disability and Sexuality Advocacy and Research. Disability Studies Quarterly
22.3 (2002): 29.
Sicko. Directed by Michael Moore. The Weinstein Company, 2007.
Siebers, Tobin. Disability in Theory: From Social Constructionism to the New Realism
of the Body. Davis, The Disability Studies Reader 17383.
. Disability Theory. Ann Arbor: University of Michigan Press, 2008.
Silvers, Anita. Formal Justice. Disability, Difference, Discrimination: Perspectives on Jus-
tice in Bioethics and Public Policy. Lanham, MD: Rowman and Littlefield, 1998. 13145.
Sins Invalid. The Dancing Tree. Performance Advertisement. The Brava Theater. San
Francisco, 28 April 2006.
Slater-Walker, Christopher, and Gisela Slater-Walker. An Asperger Marriage. Philadelphia:
Jessica Kingsley, 2002.
Smith, Bonnie G., and Beth Hutchinson, eds. Gendering Disability. New Brunswick: Rut-
gers University Press, 2004.
Smith, Sidonie. Taking It to a Limit One More Time: Autobiography and Autism. Getting
a Life: Everyday of Autobiography. Ed. Sidonie Smith and Julia Watson. Minneapolis:
University of Minnesota Press, 1996. 22646.
Snyder, Sharon L., Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, eds. Dis-
ability Studies: Enabling the Humanities. New York: MlA, 2002.
Solovay, Sondra. Tipping the Scales of Justice: Fighting Weight-Based Discrimination. Am-
herst, NY: Prometheus, 2000.
Somerville, Siobhan B. Queering the Color Line: Race and the Invention of Homosexuality
in American Culture. Durham: Duke University Press, 2000.
Southern Comfort. Directed by Kate Davis. New Wave Films, 2001.
Spivak, Gayatri Chakravorty. In Other Worlds: Essays in Cultural Politics. New York: Rout-
ledge, 1988.
Works Cited 389

St. Clair, Janet. The Courageous Undertow of Zora Neale Hurstons Seraph on the Su-
wanee. Modern Language Quarterly 50.1 (1989): 3857.
Stevens, Bethany. Crip Confessions. <http://www.cripconfessions.com>.
Stiker, Henri-Jacques. De Quelques Symbolisations de LInfirmit. Contraste 4 (1996):
3348.
. Franchir les interdits les plus fondamentaux. Handicaps et Sexualit: Le Livre
Blanc. Ed. Marcel Nuss. Paris: ditions Dunod, 2008. 23440.
. Pour le Dbat Dmocratique: La Question du Handicap. Paris: ditions du
ctneRhi, 2000.
Stone, Deborah A. The Disabled State. Philadelphia: Temple University Press, 1984.
Storrs, Bob. Amputees, Inc.: Amputees Pitching Productsand Themselvesto Devo-
tees of Disability. New Mobility: Disability Culture and Lifestyle (June 1997): 2631.
. Caveat Dater: Devotees of Disability. New Mobility: Disability Culture and Life-
style (January 1996): 5053.
Straker, Gillian. Race for Cover: Castrated Whiteness, Perverse Consequences. Psycho-
analytic Dialogues 14.4 (2004): 40522.
Strakosch, Francis M. Factors in the Sex Life of Seven Hundred Psychopathic Women. Utica,
NY: State Hospital Press, 1934.
Suggs, Trudy. Deaf Wanna-Bes. The Tactile Mind: Quarterly of the Signing Community
(Spring 2003): 4386.
Tate, Claudia. Hitting A Straight Lick with a Crooked Stick: Seraph on the Suwanee, Zora
Neale Hurstons Whiteface Novel. The Psychoanalysis of Race. Ed. Christopher Lane.
New York: Columbia University Press, 1998. 38094.
Taylor, Sunny. The Right Not to Work: Power and Disability. Monthly Review: An Indepen-
dent Socialist Magazine 55.10 (March 2005). <http://monthlyreview.org/2004/03/01/
the-right-not-to-work-power-and-disability>.
Tolnay, Stewart E., and E. M. Beck. A Festival of Violence: An Analysis of Southern Lynch-
ings, 18821930. Urbana and Chicago: University of Illinois Press, 1992.
Trachtenberg, Peter. The Casanova Complex: Compulsive Lovers and Their Women. Lon-
don: Eden Books, 1988.
Tremain, Shelley. On the Subject of Impairment. Disability/Postmodernity. Ed. Mairian
Corker and Tom Shakespeare. London: Continuum, 2002. 3247.
Trent, James W., Jr. Inventing the Feeble Mind: A History of Mental Retardation in the
United States. Berkeley: University of California Press, 1994.
Triea, Kiira. Power, Orgasm and the Psychohormonal Research Unit. Dreger, Intersex
in the Age of Ethics 14144.
Turner, Victor. From Ritual to Theatre. The Human Seriousness of Play. New York: PAj, 1982.
Urge New Laws as Sole Hope of Curbing Morons. Chicago Daily Tribune 20 January
1937: 3.
Vahldieck, Andrew. Uninhibited. Nerve. 19 November 1999. <http://www.nerve.com/
PersonalEssays/Vahldieck/uninhibited/>.
Vaid, Urvashi. Virtual Equality: The Mainstreaming of Gay Liberation. New York: Anchor,
1995.
390 Works Cited

Velasco, Sherry M. Male Delivery: Reproduction, Effeminacy, and Pregnant Men in Early
Modern Spain. Nashville: Vanderbilt University Press, 2006.
Wade, Cheryl Marie. It Aint Exactly Sexy. The Ragged Edge: The Disability Experience
from the Pages of the First Fifteen Years of The Disability Rag. Ed Barrett Shaw. Louis-
ville: Advocado Press, 1994. 8890.
Waldrep, Christopher, ed. Lynching in America: A History in Documents. New York: nyu
Press, 2006.
Walker, Alice. Foreword. Zora Neale Hurston: A Literary Biography. By Robert Hemenway.
Urbana: University of Illinois Press, 1977. xixviii.
Walloch, Greg. Two Performance Pieces. Guter and Killacky 15.
Want. Directed by Loree Erickson. dvd. Femmegimp Productions, 2006.
Ward, Amy Paul. Rape. Encyclopedia of Disability. Ed. Gary L. Albrecht. Thousand Oaks,
CA: Sage, 2006. 134851.
Washington, Mary Helen. A Woman Half in Shadow. I Love Myself When I Am Laughing:
A Zora Neale Hurston Reader. Ed. Alice Walker. New York: Feminist Press, 1979. 725.
Waxman-Fiduccia, Barbara Faye. Current Issues in Sexuality and the Disability Move-
ment. Sexuality and Disability 18.3 (2000): 16774.
. Sexual Imagery of Physically Disabled Women: Erotic? Perverse? Sexist? Sexu-
ality and Disability 17.3 (1999): 27782.
Weeks, Jeffrey. The Sexual Citizen. Theory, Culture, and Society 15.34 (1998): 3552.
Weiss, Gail. Body Images: Embodiment as Intercorporeality. New York: Routledge, 1998.
. Refiguring the Ordinary. Bloomington: Indiana University Press, 2008.
Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New
York: Routledge, 1996.
. Unhealthy Disabled: Treating Chronic Illnesses as Disabilities. Hypatia 16.4
(2001): 1733.
Westgren, Ninni, and Richard Levi. Sexuality after Injury: Interviews with Women after
Traumatic Spinal Cord Injury. Sexuality and Disability 17.4 (1999): 30919.
White, Patrick. Sex Education; Or, How the Blind Became Heterosexual. GLQ: A Journal
of Lesbian and Gay Studies 9.12 (2003): 13347.
Wiegman, Robyn. American Anatomies: Theorizing Race and Gender. Durham: Duke Uni-
Wilchins, Riki. Its Your Gender, Stupid! Nestle, Howell, and Wilchins, GenderQueer
2332.
Wilensky, Amy. The Skin Im In. Nerve. 24 October 2001. <http://www.nerve.com/
PersonalEssays/Wilensky/skin/>.
Wilkerson, Abby L. Diagnosis: Difference: The Moral Authority of Medicine. Ithaca: Cor-
nell University Press, 1998.
. Disability, Sex Radicalism, and Political Agency. National Womens Studies As-
sociation Journal 14.3 (2002): 3357.
. Refusing Diagnosis: Mother-Daughter Agency in Confronting Psychiatric Rhe-
toric. Disability and Mothering. Ed. Cynthia Lewiecki-Wilson and Jen Cellio. Toronto:
Demeter, 2010.
Works Cited 391

Wilkerson, William. Is There Something You Need to Tell Me? Coming Out and the
Ambiguity of Experience. Reclaiming Identity: Realist Theory and the Predicament of
Postmodernism. Ed. Paula M. L. Moya and Michael R. Hames-Garca. Berkeley: Uni-
versity of California Press, 2000. 25178.
Williams, Donna. Autism: An Inside-out Approach. Philadelphia: Jessica Kingsley, 1996.
. Everyday Heaven: Journeys Beyond the Stereotypes of Autism. Philadelphia: Jessica
Kingsley, 2004.
. Nobody Nowhere: The Extraordinary Biography of an Autistic. New York: Avon,
1992.
. Somebody Somewhere: Breaking Free from the World of Autism. New York: Ran-
dom House, 1994.
Williams, Raymond. Marxism and Literature. Oxford: Oxford University Press, 1977.
Wilson, Anne, and Peter Beresford. Madness, Distress and Postmodernity: Putting the
Record Straight. Disability/Postmodernity. Ed. Mairian Corker and Tom Shakespeare.
London: Continuum, 2002. 14358.
Witt, Howard. $9 Million Award in Beating Case. Chicago Tribune 21 April 2007: 3.
. Old South Racism Lives in Texas Town. Chicago Tribune 5 June 2005: 1, 18.
Worth, Heather. Bad-Assed Honeys with a Difference: South Auckland Faafafine Talk
About Identity. Intersections: Gender, History and Culture in the Asian Context 6
(2001). <http://wwwsshe.murdoch.edu.au/intersections/issue6/worth.html>.
Wright, Kai. Policing Positives. ColorLines. 21 November 2005. <http://www.blackaids
.org/ShowArticle.aspx?articletype=NEWS&articleid=164&pagenumber=1>.
Wyss, Shannon. This Was My Hell: The Violence Experienced by Gender Non-
Conforming Youth in U.S. High Schools. Journal of Qualitative Studies in Education
17.5 (2004): 70922.
Young, Iris Marion. Justice and the Politics of Difference. Princeton: Princeton University
Press, 1990.
iek, Slavoj. The Sublime Object of Ideology. New York: Verso, 1989.
392 Works Cited

ContributorS
CHriS bell was a PhD candidate in English at Nottingham Trent University, where his
research examined cultural responses to the AidS crisis. Not long before he passed away,
he had begun an appointment as a postdoctoral researcher in the Center on Human Policy,
Law, and Disability Studies at Syracuse University. Chris was the Modern Language Asso-
ciations delegate assembly representative for the Executive Committee of the Division
on Disability Studies as well as a past president of the Society for Disability Studies. His
essays have appeared in The Body: Readings in English and American Literature and Cul-
ture; Blackberries and Redbones: Critical Articulations of Black Hair/Body Politics in Afri-
cana Communities; and The Disability Studies Reader. He edited the collection Blackness
and Disability, which was published by Lit Verlag in 2011.
miCHael davidSon is distinguished professor of literature at the University of Califor-

nia, San Diego. He is the author of The San Francisco Renaissance: Poetics and Commu-
nity at Mid-Century; Ghostlier Demarcations: Modern Poetry and the Material Word; and
Guys Like Us: Citing Masculinity in Cold War Poetics. His most recent book is Concerto for
the Left Hand: Disability and the Defamiliar Body. He is the editor of The New Collected
Poems of George Oppen. He is the author of five books of poetry, the most recent of which
is The Arcades (O Books, 1998). With Lyn Hejinian, Barrett Watten, and Ron Silliman, he
is the coauthor of Leningrad. He has written extensively on disability issues, most recently
Hearing Things: The Scandal of Speech in Deaf Performance, in Disability Studies: En-
abling the Humanities; Phantom Limbs: Film Noir and the Disabled Body, in GLQ; and
Universal Design: The Work of Disability in an Age of Globalization, in The Disability
Studies Reader. His forthcoming book, Outskirts of Form: Practicing Cultural Poetics, will
be published in 2011 by Wesleyan University Press.
lennard J. daviS is distinguished professor of arts and sciences in the English Depart-
ment in the College of Arts and Sciences at the University of Illinois at Chicago. In addi-
tion, he is professor of disability and human development in the College of Applied Health
Sciences of the University of Illinois at Chicago, as well as professor of medical education
in the College of Medicine. He is also director of Project Biocultures (www.biocultures
.org), a think tank devoted to issues around the intersection of culture, medicine, dis-
ability, biotechnology, and the biosphere. Davis is the author of Enforcing Normalcy: Dis-
ability, Deafness, and the Body, which won the Gustavus Myers Center for the Study of
Human Rights annual award in 1996 for the best scholarship on the subject of intolerance
in North America, and The Disability Studies Reader, now in its third edition. His mem-
oir, My Sense of Silence, was chosen as the Editors Choice Book for the Chicago Tribune,
selected for the National Book Award for 2000, and nominated for the Book Critics Circle
Award for 2000. He has appeared on National Public Radios Fresh Air to discuss the mem-
oir, which describes his childhood in a Deaf family. Davis has also edited his parents cor-
respondence Shall I Say a Kiss: The Courtship Letters of a Deaf Couple, 193638. A collection
of Daviss essays entitled Bending Over Backwards: Disability, Dismodernism, and Other
Difficult Positions was published in 2002. He was awarded a Guggenheim Fellowship in
20022003 for his book Obsession: A History. His most recent book is Go Ask Your Father;
it chronicles his search for his biological father using dnA testing. He is currently editing
the Routledge Series Integrating Science and Culture. He has written numerous articles in
the Nation, the New York Times, the Chicago Tribune, the Chronicle of Higher Education,
and other print media. Davis has also been a commentator on National Public Radios
All Things Considered and appeared on Morning Edition, This American Life, The Diane
Rheim Show, Odyssey, The Leonard Lopate Show, and other National Public Radio affiliates.
miCHel deSJardinS is associate professor of psychology at the University of Saskatche-

wan. He has done postdoctoral research in both the Universit du Qubec Montral and
in the Department of Social Medicine at Harvard Medical School. He has a PhD in anthro-
pology from the Universit de Montral. Desjardins is the author of Le jardin dombres: La
potique et la politique de la rducation sociale. His current research explores the social
control of sexuality, reproduction, and family life of people labeled intellectually disabled;
the paradox of rehabilitation and inclusion strategies within democratic societies; the pro-
cesses of self and lifeworld reconstruction of people with an acquired brain injury; and
the challenges of creating partnerships within the networks of disability services in both
Saskatchewan and Quebec.
lezlie frye is an activist, performance artist, poet, and scholar based in Brooklyn. She
was a company member of GiMP, a New Yorkbased interdisciplinary dance project en-
394 Contributors
gaging the disabled and abled body as spectacle, and a former member of Sins Invalid, a
San Franciscobased artists collective exploring disabled and abled sexuality. Frye aims
to address intersecting forms of oppression and to locate critical resistance in the foxy
bodies of cripples everywhere. In conjunction with movement work and performance,
she leads workshops and teach-ins around the country. Frye is currently a doctoral stu-
dent in the American Studies Program, Department of Social and Cultural Analysis, at
New York University. Her work explores the regulatory dimensions of U.S. citizenship as
shaped through the intersecting projects and processes of race and capacity as well as the
counterlogics of crip and queer aesthetics and the alternative politics of life and death
they engender.
raCHael groner is an associate professor of teaching and instruction in English and

associate director of the First Year Writing Program at Temple University. She teaches
writing and literature (modern and contemporary American literature, womens litera-
ture, and graphic novels). She is currently working on an article on emotion in the first-
year writing classroom and is revising a book manuscript tentatively titled Melancholy
Subjects: Citizenship, Affect, and Publicity in Contemporary American Culture.
kriSten Harmon is professor of English at Gallaudet University, as well as communica-

tions officer and integration of research and education team leader for the National Sci-
ence Foundationfunded Science of Learning Center at Gallaudet University on Visual
Language and Visual Learning (vl2). She received her PhD from the University of Mis-
souri, Columbia, where she specialized in ethnographic studies and creative writing. She
was a member of the Modern Language Associations Committee on Disability Issues in
the Profession as well as the Executive Committee for the Disability Studies Division and
Deaf Studies Discussion Group. Her work has appeared in books and journals in Deaf
studies, disability studies, and womens studies. She has also edited a forthcoming collec-
tion of contemporary Deaf American creative writing.
miCHelle Jarman is assistant professor of disability studies at the University of

Wyoming. Her broad research interests include twentieth-century U.S. literature, inter-
sections between feminist theory and disability studies, and cultural representations of
disability. Jarmans essays have appeared in journals such as MELUS, Review of Disability
Studies, and several literary and disability studies anthologies.
aliSon kafer is associate professor and chair of feminist studies at Southwestern

University. Her work on gender, disability, and sexuality has appeared in The Journal of
Womens History, Gendering Disability, Thats Revolting! Queer Strategies to Resisting As-
similation, and Feminist Interventions in Ethics and Politics.
riva leHrer is a Chicago-based artist whose work has been featured in both solo and
group exhibitions over the past few decades. She is adjunct professor at the School of the
Art Institute in Chicago. Her solo exhibition, Circle Stories, was featured at the Chicago
Cultural Center in 2004 and was the subject of Sharon L. Snyder and David T. Mitchells
Contributors 395
documentary Self-Preservation: The Art of Riva Lehrer. Riva Lehrer is now represented by
Printworks Gallery of Chicago.
niCole markotiC is associate professor of English at the University of Windsor, where

she teaches English literature, creative writing, and disability studies. She is the author
of two collections of poetry, Connect the Dots and Minotaurs & Other Alphabets; a novel
about Alexander Graham Bell, Yellow Pages; a new novel about Mormonism, disability
issues, and daughters and mothers, Scrapbook of My Years as a Zealot; and a recently co-
edited anthology, The Problem Body: Projecting Disability on Film.
robert mCruer is professor of English and deputy chair of the Department of English
at the George Washington University, where he teaches queer studies, disability studies,
and critical theory. He is the author of Crip Theory: Cultural Signs of Queerness and Dis-
ability, which was awarded the Alan Bray Memorial Book Award in 2007 by the Modern
Language Association; and The Queer Renaissance: Contemporary American Literature
and the Reinvention of Lesbian and Gay Identities. With Abby L. Wilkerson, he co-edited
Desiring Disability: Queer Theory Meets Disability Studies, a special issue of GLQ: A
Journal of Lesbian and Gay Studies. His essays have appeared in a range of locations, in-
cluding Genders, Journal of Literary and Cultural Disability Studies, Journal of Medical
Humanities, PMLA, and Radical History Review.
anna mollow is currently on leave from her studies at the University of California,
Berkeley, where she is a PhD candidate in English. Her essays on disability have appeared
in Michigan Quarterly Review, MELUS, The Disability Studies Reader, and WSQ.
raCHel oConnell is a postdoctoral research fellow in the English Department at New

York University. Her research interests include nineteenth- and early twentieth-century
British literature, aestheticism, womens writing, psychoanalytic theory, queer studies,
gender studies, and disability studies. Her dissertation, A House Not Made with Hands:
Modes of Retreat in the Non-Fiction Prose of the British Aesthetic Movement, 18731914,
explores the politics and ethics of retreat (manifested variously as social withdrawal, as-
cetic seclusion, and forms of reticence and restraint) in the late nineteenth century.
david Serlin is associate professor of communication and science studies and chair
of the Department of Communication at the University of California, San Diego. He is
the author of Replaceable You: Engineering the Body in Postwar America (University of
Chicago Press, 2004), which was awarded the Alan Bray Memorial Book Award by the
Modern Language Association in 2005; the co-editor of two anthologies, Policing Public
Sex: Queer Politics and the Future of AIDS Activism (South End Press, 1996) and Artificial
Parts, Practical Lives: Modern Histories of Prosthetics (nyu Press, 2002); and the editor of
Imagining Illness: Public Health and Visual Culture (University of Minnesota Press, 2010).
He is currently completing a book about the relationship between disability and modern
architecture since the late nineteenth century.
396 Contributors
ruSSell SHuttlewortH is a medical anthropologist and disability studies researcher.
He is currently a lecturer in sexual health at the Faculty of Health Sciences, University
of Sydney. His articles on sexuality and disability and disability studies have appeared in
many journals, including Sexuality and Disability, Medical Anthropology Quarterly, Aus-
tralian Journal of Human Rights, and Disability Studies Quarterly. His research interests
include sexuality and disability, masculinities and disability, sexuality and ageing, impair-
ment disability across cultures, disability ethnography, and the communication issues of
people with speech impairments. Shuttleworth worked for many years as a personal assis-
tant for disabled men, and he reflexively incorporates this experience into his research
and writing.
tobin SieberS is V. L. Parrington Collegiate Professor and professor in the Department

of English and in the School of Art & Design at the University of Michigan. He has pub-
lished essays on disability in American Literary History, Cultural Critique, Literature and
Medicine, Michigan Quarterly Review, PMLA, and contributed to the Modern Language
Associations Disability Studies: Enabling the Humanities. His most recent books are Dis-
ability Theory and Disability Aesthetics.
abby l. wilkerSon is a philosopher whose work focuses on embodied agency and so-
cial movements, particularly in the contexts of food, disability, health, and sexuality. Her
publications include The Thin Contract: Social Justice and the Political Rhetoric of Obe-
sity (forthcoming); Diagnosis: Difference: The Moral Authority of Medicine; and articles in
anthologies and journals. She co-edited the award-winning Desiring Disability: Queer
Theory Meets Disability Studies, a special issue of GLQ: A Journal of Lesbian and Gay
Studies, with Robert McRuer. She teaches in the University Writing Program at the George
Washington University in Washington, D.C.
Contributors 397
index
Note: page numbers in italics refer to illustrations; those followed by n indicate endnotes.
AbA (applied behavior analysis), 27879 39; sexual attitudes determined by

Abel, Theodora M., 154 ideology of ability and, 4043
able-bodied gaze, 10910 abortion and futurity, 288
able-bodiedness: aesthetic nervousness About Schmidt (film), 206n7
and, 138, 144n17; compulsory, 125, 265, abstinence-only sex education model, 187
362, 369, 372n7; jock body stereotypes academia and propriety, 1718
and heteromasculinity in Murderball access, sexual: critical interpretive
and, 17071; running body as legible ethnography and, 55; disability studies
sign of, 34n6; sexuality identified and, 61; existential-phenomenological
with, 23. See also body and bodies obstruction and, 68n9; by hiv-
ableism: amputee devoteeism and un- positive subjects, 226; of intellectu-
marked norm within, 344; homo- ally disabled people in Quebec, 7374;
phobia and, 294, 298; minoritizing normative expectations and, 6163;
and universalizing in, 22; queerness as political and theoretical concept, 4;
vs. disability and, 294; racism, eugen- private-public distinction and, 5; sex
ics, and, 9193, 1034; sex life and, life vs. sexual culture and, 3940
accommodation model vs. compensation ceptance of, 338, 34041; websites for,
model, 31 335, 350n4
Accord Alliance, 206n11, 207n19 amputee lived experience. See crip
activism. See disability rights movement experiences
and activism Amputee Times, 339
AdA (Americans with Disabilities Act), Amundson, Ron, 33n4
67, 25, 33n3, 314 Androgen Insensitivity Syndrome Sup-
addiction. See sex addiction port Group uk (AiSSG), 206n11
aesthetic nervousness, 138, 144n17 animalistic, disability represented as, 102
agency, 19394, 2012, 303. See also anonymous sex, 21, 24, 22223
subjectivities antirelational thesis, 286, 3067
Aguilera, Raymond, 360 anti-Semitism, 13334
Ahmed, Sara, 16162 applied behavior analysis (AbA), 27879
AidS. See hiv and AidS Aquamarine Blue 5 (Prince-Hughes), 274
Alabama v. Garrett, 7 AScotwoRld, 34243, 351n9, 352n15
Alcoholics Anonymous (AA), 31819 ASd. See autism and autism spectrum
Allen, James, 106n6 disorder
Amato, Toni, 2023 asexuality. See desexualization and
American Sign Language (ASl), 367, 368 asexuality
Americans with Disabilities Act (AdA), Aspergers syndrome. See autism and
67, 25, 33n3, 314 autism spectrum disorder (ASd)
Amox, Christopher, 90 Aspies for Freedom, 27980
Amputated Desire, Resistant Desire Aston, Maxine, 270, 276
(Kafer), 334 Asylum for Idiots and Feebleminded
Amputee Coalition of America (AcA), Youths (Winfield, Kansas), 9697
353n19 athletes. See nationalism, crip national-
amputee devoteeism: ableist unmarked ism, and Murderball (film)
norm within, 344; access of ampu- audism, 371n4
tees to networks and photographs autism and autism spectrum disorder
and, 34244; background of, 33136; (ASd): alternate modes of sexual
definition of, 336; desire and ambiva- and sensual expression and, 273
lence and, 34246, 34950; different 78; Bettelheims theory of the cold
disabilities and devoteeism within, mother and, 278; definition of, 265
354n23; exceptionalism and, 335, 336, 66; description and demographics of,
34142; fetishism and, 351n10; as Gor- 26667; emotion and, 27678; glass
dian knot, 34446; lesbianism and, wall metaphor and, 27778; homo-
351n10; logic of desire and disgust sexuality surveillance and disciplin-
and, 33642; models of desire out- ing compared to, 2021; lGbtQ com-
side of exceptionalism and, 34749; munities and community of, 27880;
power relations and, 344; sexual ex- public attention to and false assump-
cess and, 286; sightings stories and tions about, 26364; queerness,
harassment and, 33942; social ac- heteronormativity, and, 265, 27073,
400 Index
27576, 280; Star Trek characters and, birth control. See sterilization of intellec-
264, 270; subjectivity and, 26869 tually disabled people in Quebec
Autism Resource Foundation, 279 bisexuality, experience of disability and,
autonomy and self-determination: global, 24244
53; interconnection vs., 205; as marker blame, 303
of civilization, 151; medicalization blindness, metaphorical, 295
and, 46; sex addiction and choice, Block, Pamela, 7071
321; Shildrick on, 66 blockage, lived experience of, 63
body and bodies: abjected, in Barness
Baartman, Saartjie, 122n5 Nightwood, 139; athletic, in Murder-
Bales, Malcolm, 90 ball, 17071; betrayal of, in intimacy,
barbarism, production of, 16768, 177 5758; Butler on norms and embodi-
78, 180 ment and, 355; flexibility of erotics
Barnes, Djuna, 123, 127, 13142 of, 4748, 6465; immigrant labor
Baron-Cohen, Simon, 266, 26869 relations and, 170; race in Barness
Barounis, Cynthia, 171, 182n10 Nightwood and, 13234; Scheper-
Barr, Martin, 97 Hughes and Locks three-body heu-
barriers as lived metaphors, 6263 ristic schema and, 5960; sexological
Bates, Kathy, 206n7 readings of womens bodies, 15051;
Baudrillard, Jean, 29394 split between mind and, autism and,
Bauer, Gary, 311n11 265. See also able-bodiedness
Beatie, Thomas, 125 Bolles, M. Marjorie, 14748. See also The
The Belfry (Lehrer), 25455 Personality and Sexuality of Physically
Bend It Like Beckham (film), 180n1 Handicapped Women (Landis and
Benjamin, Walter, 16768 Bolles)
Bentley, Toni, 324 Bolus, Sonya, 202
Berkowitz, Richard, 3 Boone, Joseph, 136
Berlant, Lauren, 160, 280n1 borders: barriers and, as lived metaphors,
Bersani, Leo: on antirelationality and 6263; of home, 23132; national
utopianism, 286, 3067; The Freud- identity and, 17475; passports and
ian Body, 299302; Homos and checkpoints as, 16970, 17476; top
Fr-oucault, 3067, 311n18; Is the and bottom and, 169; work across
Rectum the Grave?, 29899, 3045, national, 16870. See also national-
30910 ism, crip nationalism, and Murder-
Brub, Michael, 295 ball (film)
Besnier, Niko, 196 Borders (King), 174
Bettelheim, Bruno, 278 bottom and top, 169, 17172
Bhabha, Homi, 364 Bourne, Randolph, 34n9
biocultural explanation of sex addiction, Brewer, Lawrence Russell, 106n2
32830 Brodsky, Archie, 32425
biological futurity. See pregnant men and Brownworth, Victoria A., 2
biological futurity Bruno, Richard L., 356
Index 401
Bush, George H. W., 25 from, 19495; intersex, 18992; queer,
Bush, George W., 17778, 187 in film Murderball, 17981; sense of
Butler, Judith: on legitimacy and illegiti- self in, 268; as site of dystopic futures
macy, 2526, 31; on new gender poli- in Barness Nightwood, 13435; stares
tics, 186; on norms and embodiment, of, 234; Youre a freak encounter in
355; Samuels on, 289; on sexuality as market and, 25662. See also repro-
mode of being, 362; on transgender duction; sterilization of intellectually
and intersex movements, 193; on disabled people in Quebec
unintelligibility, 367 Chivers, Sally, 175, 181n3
Byrd, James, Jr., 9091, 106n2 choice: abortion and terminology of, 288;
addiction and, 321; existentialism vs.
Callen, Michael, 3 sexual culture and, 40; medicalization
Campbell, Fiona Kumari, 351n7 and, 46; sex addiction and, 321; sexual
Canto XII (Pound), 130 negotiation and, 317; voluntary ster-
capitalism, legitimacy and critiques of, ilization and, 8083
3031 A Christmas Carol (Dickens), 29193,
care facilities, long-term, 45 29596
Carnegie, Dale, 155 citizenship, sexual: Duggan on gay mar-
the carnivalesque, in Barness Nightwood, riage and reproductive rights and,
13637, 140 53n1; Katyal on sexual sovereignty
Carriker, Gary Wayne, 211, 216 and, 52n1; new gender and sex iden-
Cartesianism and autism, 269 tity formations and, 51; places for sex
Casanova, Giacomo, 32223 and, 5051; sexual culture and, 47;
Casanova Complex, 32223 Weeks, Plummer, and Wilkerson on,
castration and Barness Nightwood, 141 3738
castration and lynching. See race, dis- Claiming Disability (Linton), 3
ability, and sexual menace narratives Clare, Eli, 199, 205, 34749
cerebral palsy and touch, 34749 class, 44, 31718
cerebral palsy study in San Francisco. See Clinton, Hillary, 123
critical-interpretive ethnography of clitoris size and clitorectomy, 190, 200
men with cerebral palsy 201
Cervantes, Miguel de, 126 clothing, 236, 23940
Chase, Cheryl, 18990, 2045, 207n19 codependence, 315, 327
Chen, Mel, 13 cognitive disability: autism and, 267;
Chesser, Eustace, 326 in Barness Nightwood, 140; invisi-
children: applied behavior analysis used bility and, 280n2; morons and, 93,
on, 279; classroom experiences of, 99100, 106n4; nation-state and alien
24042; clothing choices made for, other and, 175; rethinking models of
236, 240; Edelman on the Child disability and, 329. See also race, dis-
figure, 20, 12526, 28793; fear of ability, and sexual menace narratives;
sexual crimes against, 100; gender sterilization of intellectually disabled
identity disorder diagnosis for, harm people in Quebec
402 Index
Colker, Ruth, 6, 14041 vs., 310n4; pregnant man figure and
Collins, Patricia Hill, 208 crip identities and, 12526
Comay, Rebecca, 358 Crip Theory (McRuer), 310n4
coming out, 1012, 350n4, 369 critical-interpretive ethnography of men
compensation model vs. accommodation with cerebral palsy: cultural transfor-
model, 31 mation and, 6566; interpretations as
compulsivity and sex addiction, 32526 collaborative fictions and, 5659; re-
compulsory able-bodiedness, 125, 265, sistance to asexual status and, 6365;
362, 369, 372n7 Scheper-Hughes and Locks three-
compulsory heterosexuality, 161, 265 body heuristic schema and, 5960;
compulsory reproduction, 12527, 289 sexual oppression and normative
Conrad, Joseph, 25 expectations and, 6063; theoretical
consciousness, disabled, 300 context for, 5456
Corin, Alain, 151 Cullen, William, 318
court cases: Alabama v. Garrett, 7; cultural change, 2, 72, 21516
Carriker and Cox cases in Georgia, cultural imperialism, 195, 19899
2089, 211, 21516; Johnson and culturalism, disability, 16768, 179
Byrd cases in Texas, 8991, 105; cultural studies, 350n5
Lawrence v. Texas, 53n1; Toyota
Motor Manufacturing v. Williams, Davies, Dominic, 2, 4445
67 Davis, Katherine Bement, 15052
Coventry, Martha, 190 Davis, Lennard, 3, 9091, 357
Cox, Gary, 2089 deaf wannabes, pretenders, and devo-
Craig, Larry, 21 tees: audism and, 371n4; cochlear
Crimp, Douglas, 3 implants and, 369; deaf erotica and,
crip as term, 142n1 35860; Deaf-Wannabee Internet
Crip Confessions blog (Stevens), 23 group and, 35657; Deaf World and,
crip experiences: with bisexuality and 36771, 371n2; definitions of, 35556;
disability, 24246; clothing and, 236, dependence element and passive gen-
23940; family and childhood homes der roles and, 36566; DSM-IV-TR on
and, 23640; home and, 23132, 246; paraphilias and 36062; early fasci-
home of others and, 24648; lovers nations and, 36465; erotic effects of
and, 24852; school and, 24042; wearing a hearing aid and, 366; fetish
the street and sidewalks and, 23236, theories and, 35758; hearing aids as
246, 252. See also critical-interpretive supplying deficiency, 363; norms and
ethnography of men with cerebral intelligibility, 35556; self-deafening,
palsy 357, 36770; semantic reversals and,
crip nationalism. See nationalism, crip 367; sexuality and, 36263; stereotypic
nationalism, and Murderball (film) representation and displacement and,
cripsploitation, 121n4 364
crip theory: crip as term compared to death drive, 125, 28687, 290, 293302,
queer and, 142n1; disability theory 3058. See also the disability drive
Index 403
de Certeau, Michel, 85n6 Diagnostic and Statistical Manual of
Delany, Samuel R., 30, 21819, 222, 224 Mental Disorders (DSM- IV- TR), 313,
de Lauretis, Teresa, 312n19 36062
de Man, Paul, 293 Dickens, Charles, 29193, 29596
DEmilio, John, 224 Dionysus, 126
dependence in deaf fetishism, 36566 disability, definitions of, 67, 25, 33n3
depersonalization, medicalized, 4546 disability activism. See disability rights
desexualization and asexuality: autism movement and activism
and, 264; excessive sexuality and, 286, disability and sex as disabling or enabling
308; gender, erasure of, 242; human- each other, 2324
ness and, 308; lived experience of, 58; disability culturalism, 16768, 179
pride and, 302; resistance to, 6365, the disability drive: Bersanis Homos
180; seraphic idiot figure and, 6971, and Fr-oucault and, 3067; Ber-
85n1; sex as disability and, 304; sexo- sanis Is the Rectum the Grave?
logical assumptions and, 152; sexo- and The Freudian Body and, 297302,
logical conclusions about hyposexu- 30910; disability as pitiable or dis-
ality and, 152 reputable and, 3025; Edelman on
desire: amputee devoteeism, desire/ Tiny Tim and sinthomosexuality
disgust logic in, 33642; amputee and, 29196; Edelmans reproductive
devoteeism as Gordian knot and, futurism and, 28791; humanity, in-
34247; amputees and touch, beyond humanity, and OBriens How I Be-
devoteeism exceptionalism, 34749; came a Human Being and, 30510;
in Barness Nightwood, 13134, 138; rehabilitative futurism and, 28791;
Berlant on, 160; defusing the adverse sexual excess and lack connected to
context of, 6364; flexibility of, 4748; disability and, 28586
Freuds case of Dr. Schreber and, disability rights movement and activ-
128; knowledge and, 224; in Malets ism: de-institutionalization goal and,
The History of Sir Richard Calmady, 307; disability theory and, 307; inter-
10911, 11420; Murderball and, 168 sex and transgender movements and,
71, 178; for offspring, converted into 18386; Longmore on, 56; rehab and,
desire for infertility, 7981; touch and, holistic approaches to, 352n13; sexual
146; transgender and, 202; warnings access and, 61
against, 239, 24748 disability studies: access and neglect of,
developmental disability. See cognitive 61; disability theory vs., 287; identity
disability; race, disability, and sexual emphasis and, 8; legitimacy in, 3032;
menace narratives; sterilization of major texts and sex coverage and, 3;
intellectually disabled people in minoritizing claims in, 22; queering
Quebec of, 32; sex addiction and, 31920; sexi-
DeVito, Danny, 124 ness elided in, 29; sexual access and
devoteeism. See amputee devoteeism; neglect of, 55
deaf wannabes, pretenders, and disability theory: crip theory vs., 310n4;
devotees disability drive and, 27; disability
404 Index
rights movement and, 307; disability Ellis, Havelock, 135
studies vs., 287; Edelmans sinthomo- Elman, R. Amy, 339
sexuality and, 29294; identity poli- emotion: autism and, 264, 266, 27678;
tics and, 310n4; inhumanity and, bodily, 57; nationalism and, 181n2
3056; intersex and trans agency and, empathy with evaluative gaze, 5859
184, 188; male pregnancy and, 141; re- Enforcing Normalcy (Davis), 3
habilitative futurism and, 28889. See environmental illness (ei), 1013
also identity and identity politics Erickson, Loree, 353n21
disgust and desire in amputee devotee- erogenous zones and normative vs. flex-
ism, 33642, 344 ible sexuality, 4748
disorders of sexual development (dSd), erotomania, 31314
18889 erotophobia, 191, 2034. See also desexu-
display. See gaze and display; visual alization and asexuality
rhetorics essentialism, genetic vs. surgical, 201
disreputable vs. pitiable disability, 3025 ethnocentrism, 195, 206n14
Dixon, Melvin, 227 ethnography. See critical-interpretive
Dole, Bob, 206n7 ethnography of men with cerebral
Don Quixote (Cervantes), 126 palsy
Dougherty, Dawn, 203, 205 eugenics: degeneration theory and
Dragonworks Devotee Community, 360 Barness Nightwood, 13437; futurity
Dreger, Alice Domurat, 191, 206n10 and, 12728; sex addiction and, 316;
DuCille, Ann, 107n9 tactile exhibits at conferences and,
Duggan, Lisa, 53n1, 93, 107n10, 172 14647, 147. See also race, disability,
Duncan, Kath, 362 and sexual menace narratives; ster-
Dyer, Isabel, 99 ilization of intellectually disabled
people in Quebec
Ebert, Roger, 17879 European Charter for Persons with Aut-
Eckert, Lena, 188 ism, 264
Edelman, Lee: antirelational thesis and, Ever After (Edelman), 308
286; on Baudrillard, 29394; Ever ex-gay movement, 279
After, 308; Huffer and de Lauretis existential-phenomenological obstruc-
on, 312n19; on humanity and inhu- tion, 68n9
manity, 305; identity politics and, exploitation: by amputee devotees, 339
28990; on politics, 291, 308; on queer 41; as face of oppression, 19798;
family values, 141; on queerness and super-exploitive work conditions,
sexuality as destructive, 297, 302; on 170; transgender, intersex, and, 199
reproductive futurism and the Child, Extraordinary Bodies (Garland-
20, 12526, 28791; on Tiny Tim and Thomson), 3, 109, 115
sinthomosexuality, 29196 Eyes of Desire (Luczak), 2
ei (environmental illness), 1013
Eliot, George, 293 faafafine Polynesians, 19596
Eliot, T. S., 123, 130, 135, 139 fascism, 140, 142, 143n5
Index 405
fatness, 303 and, 12829, 14142; its all in your
Faulkner, William, 9799 head skepticism and, 304; theories
feebleminded. See race, disability, and of primary and secondary gain and,
sexual menace narratives; sterilization 297
of intellectually disabled people in The Freudian Body (Bersani), 299302
Quebec Frith, Uta, 26869
Feminine Boy Project (uclA), 279 Fromm, Erich, 326
Femininity (OBrien), 3089, 312n21 Fr-oucault (Bersani), 3067
feminist theory, 8, 43 futurism, reproductive, 141, 28791
Ferguson, Roderick A., 1314 futurity, biological. See pregnant men
Fernald, Walter, 96, 98 and biological futurity
Festival Nights, 126, 143n3
fetishism: amputee devoteeism and, Garland-Thomson, Rosemarie: on ac-
351n10; Bhabhas racial fetish, 364; commodation model vs. compen-
definitions of devotee, pretender, and sation model, 31; on affluence, 30;
wannabe, 356; DSM- IV- TR on para- Extraordinary Bodies, 3, 109, 115;
philias, 36062; foot fetishes, 358; in on extraordinary body, 121n1; on
pornography, 244; theories of, 35758. Murderball, 166; on the normate, 186,
See also amputee devoteeism; deaf 371n1; The Politics of Staring, 109;
wannabes, pretenders, and devotees on reframing disability, 357; on Sedg-
Finger, Anne, 2, 38 wicks universalizing/minoritizing
Finkelstein, Naomi, 205 distinction, 33n5; on visual rhetorics,
Fiol-Matta, Licia, 177 10910, 11315, 12021, 121n2
Flanagan, Bob, 17, 121n2 gay and lesbian movement, 30, 32, 278
Fleche, Anne, 269 80. See also homosexuality
Foucault, Michel: Bersanis Fr-oucault, gaze and display: able-bodied, 10910;
3067; Fearless Speech, 227; on insti- autism and, 274; empathy with
tutions and power, 84; on modernity, evaluative gaze, 5859; lovers regard
143n12; on regimes of biopower, 329 and, 236; scopophilia and, 36263;
Frank, Adam, 166 staring, experience of, 23234; the
Franklin, Shirley, 209 street and sidewalks and, 23236,
Fraser, Nancy, 198 246, 252. See also visual rhetorics
freaks, freak shows, and freakishness: Geertz, Clifford, 68n6
child yelling Youre a freak in mar- gender: autism and, 267; binaries of,
ket, 25662; Garland-Thomson on, dominating sex roles, 142; deaf fetish-
10910; in Malets The History of Sir ism and passivity and, 36566; family
Richard Calmady, 109, 11112, 120; and, 239; national construction and,
the pregnant male figure and, 12425; 177; new, flexible identity formations
sidewalk experiences of, 246 and, 51; pregnancy and discrimina-
Freud, Sigmund: Bersani on theo- tion of, 14042; rigid gendering vs.
retical collapse in, 300; Bersanis erasure of, 242; sex addiction and,
Fr-oucault, 3067; Dr. Schreber case 31718
406 Index
gender assignment. See intersexuality; health care and borders, 176
transgender and transsexuals health status of both hiv-negative and
gender identity disorder diagnosis, hiv-positive subjects, 226
19495 hearing aids. See deaf wannabes, pre-
GenderQueer: Voices from Beyond the tenders, and devotees
Sexual Binary (Nestle et al.), 2023 Heine, Heinrich, 32223
Genet, Jean, 306, 311n18 Hermaphrodites Speak! (documentary),
Giami, Alain, 8283 200201
Gibbs, C. E., 150 heteronormativity: amputee devoteeism
Giddens, Anthony, 318, 321 and, 344, 354n24; autism and, 265,
Gilbert, Sandra, 12930 27073, 27576, 280; crisis in, 265,
Gillespie-Sells, Kath, 2 280; definition of, 280n1; Edelman
Gilroy, Paul, 144n19 on, 287; Murderball and, 172, 17980,
glass wall metaphor, 27778 182n9; sex addiction and, 326; touch
globalization, 18384 as communication and, 16062
Goldsby, Jacqueline, 9596, 107n7 Hicks, James, 90
Golem figure, 252 hiding: amputees and exposure vs., 343;
gorillas, autistic experience of, 27778 clothing and, 236, 23940
Granata, Peter, 100 hierarchy of sexual values, in Rubin, 186,
Grandin, Temple, 264, 269, 27476 205n6
Grealy, Lucy, 37 Higher Power in twelve-step programs,
Grillo, Trina, 289 324, 328
Gubar, Susan, 12930 Hinkley, John, Jr., 313
Guggenheim, Peggy, 144n14 The History of Sir Richard Calmady
Guldin, Anne, 64, 68n7 (Malet): extraordinary body in,
Guter, Bob, 2 10811, 113, 11920; mystery and pas-
sionate prurience in, 11521; race,
Haag, Pamela, 15657 nation, and empire themes in, 121n5;
Hagglund, Bette, 33637 visual rhetorics in, 11115
Hahn, Harlan, 58 hiv and AidS: anonymous sex and,
Halberstam, Judith: on Muoz, 311n6; 22223; Bersani on phobia of, 29899;
on queer subjects, 2627; on queer Carriker legal case and, 211, 216; Cox
time, 120; on race, 290; on transsexu- legal case and, 2089, 21516; disclo-
als, 265, 280; on urban spaces and sure and transmission laws regarding,
safety, 222 21213, 21516, 223, 226; health care
Hale, Grace Elizabeth, 94 and health status for, 22324, 226;
Hall, Stuart, 141, 144n19 pickup narratives and, 20917, 21922,
harassment by amputee devotees, 33942 22426; responsibility and irrespon-
Harper, Phillip Brian, 176 sibility concerning, 223, 22627; risk
Hastrup, Kirsten, 5657 and, 216; sanitization of public urban
Hawking, Stephen, 306 spaces and, 21719, 222, 224; sex ad-
Hawlbecker, Hale, 200201 diction and, 326; in sexuality studies, 3
Index 407
Hockenberry, John, 304 6971, 85n1, 85n4; sexual lack and,
Hogsett, Scott, 17071, 174 286, 308
home: experiences of, 23132, 246; of hyposexuality. See desexualization and
others, 24648 asexuality
homoeroticism, 95, 17374
homophobia: ableism and, 294, 298; Ber- identity and identity politics: as amputee,
sani on, 301; Edelman on responses 336; Edelman and Muoz on, 28990;
to, 288; minoritizing and universaliz- feminist, 8; Fergusons gestural con-
ing claims and, 22; queerness vs. dis- ception and, 1314; as historical, 7;
ability and, 294 invisible disabilities and, 1012; legiti-
Homos (Bersani), 3067, 311n18 macy and, 30; model identity, codifi-
homosexuality: amputee devoteeism cation of, 12; national identity and dis-
and, 351n9, 354n24; autism and, ability, 175; new formations of gender
267; in Barness Nightwood, 13435; and sexed identity, 51; post-
ex-gay movement and, 279; Festi- disability politics, 1314; problematic
identity
val Nights in eighteenth century of identity claims, 810; queer theorys
and, 126, 143n3; Freuds diagnosis anti-
of Dr. Schreber and, 12829; inter- inclusion,
identitarian
exclusion,
bent,or8;moving
responses
away of
sexual surgery to prevent, 192; from, 2122; sex addiction and, 314;
lesbian murder case and, 93; minori- sexual culture concept and, 40, 47.
tizing and universalizing conceptions See also minority model
of, 22; in Pounds Canto XII, 130; Igoe, Chris, 17374
race intertwined with, 92; reproduc- immigrant labor, 168, 170
tive futurism and legal equality and, institutional reflexivity, 321
14142; Shakespeare on gay male intellectual disability. See cognitive dis-
subcultures, 2930; surveillance and ability; race, disability, and sexual
disciplining of, compared to autism, menace narratives; sterilization of
2021 intellectually disabled people in
hospitals and privacy, 44, 50 Quebec
How I Became a Human Being (OBrien), interdependence, sexual-political, 2035
3059 Intersex Consensus Group, 188
How to Have Promiscuity in an Epi- Intersex Society of North America
demic (Crimp), 3 (iSnA), 2045, 206n11
How to Have Sex in an Epidemic (Callen intersexuality: definition of, 205n1;
and Berkowitz), 3 erotics and, 200202; medicalization
Huffer, Lynne, 312n19 and surgery and, 18892; oppression
hugging, 145, 161 of, 199200; sexual-political inter-
humanity and inhumanity, 41, 3059 dependence and, 2035; transgender
Hunt, William A., 148 compared to, 193
Hurston, Zora Neale, 1014 invalid, 12526, 129
hypersexuality: eugenics and, 96; invisible disabilities: identity politics and,
Mephistophelic idiot figure and, 1012; material effects of marginaliza-
408 Index
tion and, 12; Montgomerys argument Law, Cardinal Bernard, 310n5
against distinction and, 280n2; need Lawrence, D. H., 12728
to differentiate cultural responses to Lawrence v. Texas, 53n1
visible disability vs., 303 Lawson, Wendy, 264, 26970, 277
Is the Rectum the Grave? (Bersani), Lazarsfeld, Paul, 153
29899, 3045, 30910 legal cases. See court cases
legitimacy, 2532, 79
Jacobs, Barbara, 270, 272 lesbian and gay movement, 30, 32, 278
Jacobs, Danny, 272, 276 80. See also homosexuality
James, Henry, 129 Lewis, Jerry, 288
Jay, Peter A., 311n11 liminality: disability as metaphor for, in
Johnson, Billy Ray, 8990, 105 Barness Nightwood, 138; Parsons on
Johnson, Harriet McBryde, 288 subculture and, 144n15; Polynesian
Jong, Erica, 25 gender-liminal faafafine, 19596
jouissance, 293 limitation, disability as signifying, 42
Joyce, James, 12930 Linton, Simi, 3, 314
Junior (film), 12324 Lippmann, Walter, 153
Justice and the Politics of Difference lived experience: academic neglect of,
(Young), 196200 5455; collaborative interpretation
of, 5659. See also crip experiences;
Kafer, Alison, 372n7 critical-interpretive ethnography of
Katyal, Sonia K., 52n1 men with cerebral palsy
Kessler, Suzanne, 192 lived metaphors, 6263
Killacky, John R., 2 Lock, Margaret, 5960
killing as displacement of fucking, 296 Longmore, Paul, 56, 14, 3031, 307
King, John William, 106n2 Lovaas, O. Ivar, 27879
King, Tom, 174 love, 276, 32627
Kinsey, Alfred, 151, 157 love addiction, 32627. See also sex
Kinsey Institute, 157 addiction
Kipling, Rudyard, 109 Luczak, Raymond, 2
Kirshenblatt-Gimblett, Barbara, 14647 Luibhid, Eithne, 53n1
Krafft-Ebing, Richard von, 135 Lurie, Samuel, 34749
Krieger, Linda Hamilton, 67 lynchings. See race, disability, and sexual
menace narratives
labor. See work
Lacan, Jacques, 29396 Malcolm X Park (Washington, D.C.),
Landis, Carney, 14748. See also The Per- 1819, 21, 24
sonality and Sexuality of Physically Malet, Lucas, 109. See also The History of
Handicapped Women (Landis and Sir Richard Calmady (Malet)
Bolles) Marcus, Jane, 136, 143n5, 143n6
Langan, Celeste, 17071 marginalization: as face of oppression,
Laplanche, Jean, 300 198; race, disability, and, 103, 290;
Index 409
marginalization (continued) as disease and, 330n7; normate sex
sexual, connected to social and politi- and privatization and, 188; photog-
cal, 290, 349; transgender, intersex, raphy and, medical, 115; privacy and,
and, 199; unseen illness and, 12 eradication of, 4346; professional-
Markovitz, Jonathan, 93 ization and, 4445; queer subjects
Martin, Greg, 2089 pathologized and, 2627; sex addic-
Martin, Saint, 296 tion and, 31314, 320, 328; transgender
masculinity: Murderball and, 166, 17072; and, 19396; withholding of diagno-
penis size and, 191; sex addiction and, sis and, 11
326 medical tourism, 18384
masochism and the disability drive, 302 Mellody, Pia, 324, 327
masturbation: as disease, 330n7; in Lan- melodrama, 172
dis and Bolless study, 158, 15859; in Melville, Herman, 34n9
Malets The History of Sir Richard Cal- mental disability. See cognitive disability;
mady, 11819; Murderball and, 174; sex race, disability, and sexual menace
addiction and, 315; sexological studies narratives; sterilization of intellectu-
on, 150 ally disabled people in Quebec
Matta, Christina, 192 mental illness: in Barness Nightwood,
McAlmon, Robert, 144n15 134, 13738; as exceptional vs. un-
McCartney, Paul, 351n11 exceptional, 34n7
McGeer, Victoria, 267 mentoring, 343
McRuer, Robert: on compulsory able- Mephistophelic idiot figure, 6971, 85n1,
bodiedness, 372n7; Crip Theory, 85n4
310n4; on crisis in heteronormativ- metaphors, lived, 6263
ity, 265, 280; on Garland-Thomsons Metzl, Jonathan, 152
visual rhetorics, 121n2 migrant workers, 168, 170
media: amputee devoteeism and, 350n5; Miller, Heather Lee, 15051
lynchings and, 9091; on morons, Million Dollar Baby (film), 126
99100; tv movie love stories, 242 Mills, Heather, 351n11
medical model and medicalization: minoritizing/universalizing impasse,
amputee devoteeism and, 333; ap- 2223, 33n5
plied behavior analysis (AbA) for aut- minority model: in AdA, and judicial
ism or homosexuality, 27879; deaf backlash, 67; AdA Amendments Act
fetishism and, 356, 36062, 367; of 2008 and, 33n3; disability drive
depersonalizing effects of, 4546; and, 3025; rights movement and,
eugenic sterilization and castration 37; sexual minority status, 33n2, 46
and, 9697; Feminine Boy Project 51. See also sexual culture; sexual
(uclA), 279; gender identity dis- minority status
order diagnosis and, 19495; global- Miracle (film), 165
ization and medical tourism, 18384; Missouri hiv disclosure law, 22324
impairment as conferred and, 319; Mistral, Gabriela, 177
intersexual, 18892; masturbation Mitchell, David T., 3
410 Index
modernity, 143n12, 151 neurosis, 15354
Money, John, 191, 32122 New York City, 21819, 222
Montgomery, Cal, 280n2 Nicholson, Jack, 206n7
Moore, Michael, 170 Nightwood (Barnes), 123, 127, 13142
Moreno, Angela, 200 No Future (Edelman). See Edelman, Lee
morons: passing and, 99, 106n4; as the normate, 186, 371n1
sexually aggressive, 93, 99100 normate sex: disability, intersex, and
Moroun, Manuel Matty, 175 transgender convergences and, 183
Mulvey, Laura, 36263 86; globalization and, 18384; intersex
Muoz, Jos Esteban, 28990, 311n6 erotics and, 200202; intersexuality
Munson, Peggy, 2023 medicalization and, 18892; non-
Murderball (film). See nationalism, crip Western cultures and, 19596; norms
nationalism, and Murderball and boundaries of, 18688; oppres-
Murray, Stephen, 22223 sion and, 196200; sexual-political
My Body, My Closet (Samuels), 1112 interdependence and, 2035; trans
erotics and, 2023; transgender medi-
Nakken, Craig, 32728 calization and, 19396
Narrative Prosthesis (Mitchell and normative expectations, social: alterna-
Snyder), 3 tive sexual ethics and, 6465; Landis
nationalism, crip nationalism, and and Bolless narratives and, 15960;
Murderball (film): classic sports film lived experience of, 6163. See also
rivalries and, 16566; cross-border heteronormativity
labor and bodies and, 16870; dis- North by Northwest (film), 293, 296
ability culturalism and, 16768; film nymphomania, 31718
awards and, 166; Iraq war veterans,
rehab, Bush endorsement, and, 177 objectification: amputee devoteeism and,
78; jock body stereotypes and hetero- 343; exotic dancing and, 277; Garland-
masculinity and, 17071; leading with Thomson and, 11011; sex addiction
head vs. body or heart and, 17374; and, 316
melodramas generating crip national- OBrien, Mark, 41, 46, 3059, 312n21
ism and, 17274; mobility, health care, obstruction, existential-
national identity, and, 17477; queer phenomenological, 68n9
subplot of nonathletic son and, 178 Olympics, 34n6
80; sex discussion and being on top oppression: lived experience of sexual,
and, 17172, 180; as subversive or 6063; sexual-political interdepen-
hegemonic, 16667 dence and, 203; of transgender and
Nattress, LeRoy, 33840, 352n16, 353n19 intersex, 199200; Youngs five faces
neoliberalism: crip nationalism and, 167, of, 196200
17172, 177; disability studies and, 31; Organisation Intersex International (oii),
gay male subcultures and, 30; Gid- 206n11
dens and, 321; marriage and, 32 orgasms, various kinds of, 49
Nestle, Joan, 202 OToole, Corbett Joan, 42, 4546, 4951
Index 411
OverGround website, 33640 nication in narrative data in, 15762;
Owens, John, 90 Tables of Vital Statistics, 149
personality studies, 15357
Pallasmaa, Juhani, 146 perversity, honoring, 185
Panzarino, Connie, 49 Pfister, Joel, 15354
paradigmatic or model person with dis- photography: of amputees, 34243,
ability, 12, 33n4 353nn2122, 360; Garland-Thomson
paralysis, 45, 47, 49. See also national- on, 110, 115; medical, 115; Victorian, of
ism, crip nationalism, and Murder- social deviants, 115
ball (film) Pilcher, Hoyt, 9697
parents of intellectually disabled chil- Pintner, Rudolph, 15455
dren. See sterilization of intellectually Pistorius, Oscar, 34n6
disabled people in Quebec pitiable vs. disreputable disability, 3025
parrhesia (frankness in speaking truth), place and space: beds as complicated
227 places, 248; home, 23132, 246; homes
Parsons, Deborah, 144n15 of others, 24648; intellectually dis-
passing: amputee devoteeism and, 350n4; abled youth and scale model world,
misrecognition and, 19; morons 8384; knowledge, desire, and poli-
and, 99, 106n4. See also coming out tics of containment, 224; normate
pathologization. See medical model and sex and, 186; perceptions of safety
medicalization in small towns vs. cities, 222; profes-
patriotism. See nationalism, crip nation- sional spaces and propriety, 1718;
alism, and Murderball (film) sanitization of public urban spaces,
Patton, Cindy, 191 21719, 222, 224; sex in public places
Peele, Stanton, 32425 as compulsive, 21; sex life and, 40;
penetrative sex: Bersani on power and, sexual citizenship and, 5051; side-
298; as intersex surgery rationale, 191; walks, 23236; urban environments
temporality of, 4849 and neurosis, 155. See also borders;
penis size, 191, 200201 privacy
Pennsylvania Training School for Feeble- Plato, 126, 307
minded Children, 97 Plummer, Kenneth, 38
performativity, 6566, 27576 The Politics of Staring (Garland-
personal ads, 28586 Thomson), 109
The Personality and Sexuality of Physi- Polynesians, gender-liminal, 19596
cally Handicapped Women (Landis the pornographic and Malets The History
and Bolles): Autoerotic Practices of Sir Richard Calmady and, 11822
(Masturbation), 158; background of, pornography, 244
14547; Masculine Protest: Objective Portrait of a Lady (James), 129
Scale, 156; personality studies and post-identity disability politics, 1314
understandings of neurosis in, 15257; postpsychiatry movement, 320
sexology research context in, 14752; Pound, Ezra, 130
subjectivities and touch as commu- Powell, Frederick, 168
412 Index
powerlessness, 19899, 299 psychiatric survivor movement, 320
Prayer of the Golem (Lehrer), 25254 Puar, Jasbir K., 181n5, 206n7
pregnancy of the soul, 307 puberty, 78, 234, 236, 240
pregnant men and biological futurity: public/private split. See private/public
in Barness Nightwood, 127, 13142; split
eugenics and, 12728, 13437; Freuds
case of Dr. Schreber and, 12829, 141 quad rugby. See nationalism, crip nation-
42; gender discrimination and legal alism, and Murderball
equality and, 14042; in Jamess Por- Quayson, Ato, 138, 144n17
traits of a Lady, 129; in Joyces Ulysses, Quebec. See sterilization of intellectually
12930; in Junior (film), 12324; in disabled people in Quebec
Pounds Canto XII, 130; queer and queercrip communities, 353n21
crip identities and compulsory repro- Queer Crips (Guter and Killacky), 2
duction and, 12527; transgender case queerness: autism and, 265, 27073, 275
of Thomas Beatie and, 12425 76, 280; bisexuality, disability, and,
Prendergast, Catherine, 34n7 244; death drive and, 297; Edelman
pressure, autism and, 27475 on, 28790, 29296; Fiol-Matta on
pretenders. See deaf wannabes, pre- flexibility of, 177; Murderball and, 166,
tenders, and devotees 171, 177, 179; pregnant man figure and,
Preves, Sharon, 201 12526, 131; sex addiction and, 32526;
Price, Margaret, 34n7 of touch, 146. See also freaks, freak
pride: autism and, 27677; desexual- shows, and freakishness
ization and, 302; disabled sex and, queer theory and queer studies: anti-
4950; in Malets The History of Sir identitarian bent of, 8; antirelational
Richard Calmady and, 116; sex addic- theory in, 286; disability coverage
tion and, 314 and, 3; disability studies and, queer-
Prince-Hughes, Dawn, 267, 26972, ing of, 32; Edelman on politics and,
27678 291; elision of queerness of disability
privacy: on demand, 50; medicalization and, 29; Halberstam on queer sub-
and, 4346; property rights and pri- jects and, 2627; heteronormativity
vacy laws, 44; right to places for sex crisis and, 265; on legitimacy and ille-
and, 5051 gitimacy, 2526, 32; performativity,
private/public split: access and, 5; in autism, and, 27576
feminist theory, 43; lynching, eugenic
castration, and, 9596, 1045; nor- race: and body in Barness Nightwood,
mate sex and privatization, 187 13234; Edelmans sinthomosexual
Prohibition, 318 and, 290; fetish, racial, 364; sex addic-
property rights and privacy laws, 44 tion and, 31718
propriety and the proper, permissible, or race, disability, and sexual menace nar-
punishable, 1718, 21 ratives: connection between eugenic
Prosser, Jay, 19394 and lynching narratives, 9297; in
prostheses, 116, 343, 363 Faulkners The Sound and the Fury,
Index 413
race, disability, and sexual menace rights movement. See disability rights
narratives (continued) movement and activism
9799; in Hurstons Seraph on the Su- risk: hiv transmission and, 216, 226; sex
wanee, 1014; Johnson and Byrd cases addiction and heteronormative risk-
in Texas and, 8991, 105; moron as taking, 326; truthtelling as, 226
social menace, 99100; political vs. rivalries in sports films and academia,
personal spheres and, 1045 16566
Raffo, Susan, 2 Roen, Katrina, 19596, 206n14
Rahv, Philip, 13334 Rosenbaum, Betty, 155
Randolph, Justin, 190 Rotman, David, 99
rape narratives. See race, disability, and Rubin, Gayle, 186, 192, 205n6
sexual menace narratives Rubin, Henry, 166
Ray, Margaret Mary, 313 rugby, quad. See nationalism, crip
reasonable accommodations and in- nationalism, and Murderball
visible disability, 12 runners, controversies over, 33n6
redemptive reinvention of sex, 298 Ryan, Michael, 32324
302 Ryan White cARe Act (1990), 213, 223
refrigerator mother theory of autism, 278
rehabilitation: amputee devotee logic sadomasochism (SM), 317
and, 33738; holistic approach to, safety, 222, 224
352n13; in Murderball, 17778; re- salvation, personal, 32324
habilitative futurism, 28889; sex Samuels, Ellen, 1112, 19, 289
addiction and recuperative narrative, Sapphic Slashers (Duggan), 93
322; sexologists mission of, 15457. Saturday Night Live (tv), 199
See also medical model and medical- satyriasis, 31718
ization Savage, Dan, 181n9, 289
religious model of sex addiction, 32224, scale model world of intellectually
328 disabled youth, 8384
Rembis, Michael A., 150 scars, experience of, 250
reproduction: compulsory, 12527, 289; Schamus, James, 206n7
displacement from the female body, Scheper-Hughes, Nancy, 5960
127; ideology of ability and, 41; Malets Schiavo, Theresa, 126
The History of Sir Richard Calmady Scholinski, Dylan, 19495
and, 120; parents of intellectually dis- Schreber, Dr., 12829, 14142
abled children and, 7782. See also Schwartz, Phil, 279
pregnant men and biological futurity Schwarzenegger, Arnold, 12324
reproductive futurism, 141, 28791 Schweik, Susan, 27, 311n9
responsibility, ideology of, 223, 22627 scopophilia, 36263
Restricted Access (Brownworth and Sedgwick, Eve Kosofsky, 22, 129, 166
Raffo), 2 self-help books and sex addiction, 323
Rice, Anne, 106n6 24, 32627
Ricoeur, Paul, 68n6 seraphic idiot figure, 6971, 85n1
414 Index
Seraph on the Suwanee (Hurston), 1014 sexual excess. See hypersexuality
sex addiction: biocultural explanation sexuality studies, disability coverage in, 3
for, 32830; causality issues and, 324 sexual lack. See desexualization and
25, 32728; characteristics and history asexuality
of, 31519; compulsivity and queer- sexual menace narratives, racial. See
ness and, 32526; definitions of, 320 race, disability, and sexual menace
21; as disability, 31415; erotomania narratives
and, 31314; heteronormative risk- sexual minority status, 33n2, 4651
taking and, 326; love, love addiction, sexual-political interdependence, 2035
codependence, and, 32627; moral- The Sexual Politics of Disability (Shake-
istic and quasi-religious perspective speare, Gillespie-Sells, and Davies), 2
on, 32224, 328; self-help books and, shadow world of intellectually disabled
32324, 32627; theoretical problems youth, 84
for disability studies, 31920 Shakespeare, Tom: access not treated by,
Sex and Disability (journal), 2 68n8; Disability Rights and Wrongs,
sex and disability as disabling or enabling 29; on private lives and sexuality, 47;
each other, 2324 on sexed identities, 51; on sexuality
Sex and Love Addicts Anonymous and disability, 2930; The Sexual Poli-
(SlAA), 314, 31920 tics of Disability, 2, 29
sex education, 187, 240 shame: amputee devoteeism and, 333, 337;
sex life, 3942 desire, touch, and, 34749; intersexu-
sexology: on fetish, 356; pregnant male ality and, 18990, 201; medical dep-
figure and, 127, 135; quantification ersonalization and, 4546; sex addic-
in, 150; racist discourse and, 92; sex tion and, 317, 324
addiction and, 31618, 323; studies of Shanker, Stuart, 269
female sexuality, 14852. See also The Shapiro, Dana, 166
Personality and Sexuality of Physically Shildrick, Margrit, 6566, 167, 175, 351n7
Handicapped Women (Landis and Sicko (film), 170
Bolles) sidewalks, experience of, 23236
sexual abuse and invasion of privacy, Siebers, Tobin, 33n4, 295, 310n4, 312n21
4546 sightings, 339
sexual awakening movement, 316 sign language. See American Sign Lan-
sexual citizenship. See citizenship, guage (ASl)
sexual Silas Marner (Eliot), 293
sexual compulsivity, 32526. See also sex Silvers, Anita, 33n4
addiction Sins Invalid performance (San Francisco,
sexual culture: definition of, 39; erotics 2006), 6465
of disability and, 4651; ideology of sinthome (Lacan), 29495
ability and, 4043; medical model sinthomosexuality (Edelman), 29294
and privacy and, 4346; minority Slater-Walker, Chris, 26970, 27273
politics and, 37; sex life vs., 3940; Slater-Walker, Gisela, 26970, 27273
sexual citizenship and, 3738 Smith, Sidonie, 268, 269
Index 415
Snyder, Sharon L., 3 Stone, Dallas, 90
Soares, Bobby, 17880 Stone, Deborah A., 31
Soares, Joe, 167, 17273, 17879 Strakosch, Francis M., 150
social model of disability: Barness Night- subjectivities: animal nature and, 137;
wood and, 137; critiques of, 33n4; autism and, 26869; Bersani on, 299
impairment vs. disability in, 319; 302; claiming of sexuality and, 6465;
Samuels on visuality and, 12; sex ad- crip nationalism and, 167; Davis study
diction and, 314; Tiny Tim and, 292 and, 15052; Lacans sinthome and,
Social Security Act, 25 29495; Landis and Bolless study
Social Security Disability Insurance and, 15861; queer theory and, 2627;
(SSdi), 31 touch and, 15760; transformation
Socrates, 126, 142n2, 307 of, 66. See also desexualization and
sodomy laws, 216 asexuality
soldiers, war-injured, 17778 Supplemental Security Insurance (SSi), 31
Somerville, Siobhan, 92 Symbolic order, 29495
The Sound and the Fury (Faulkner),
9799 Tagg, John, 115
space. See place and space Taking Woodstock (film), 206n7
Spivak, Gayatri Chakravorty, 16768 Tate, Claudia, 107n9
sports. See nationalism, crip nationalism, telethon, logic of the, 288
and Murderball temporality, 4849, 120
star groups, 76, 85n4 Thompson, Raymond, 194
staring. See gaze Tillman, Ben, 94
Star Trek (tv), 264, 270 time. See temporality
St. Clair, Janet, 107n9 Times Square, New York City, 21819,
sterilization of intellectually disabled 222, 224
people in Quebec: conversion of child Tiny Tim, 29193, 29596
into desire for infertility and, 8081; top and bottom, 169, 17172
extraordinary sexuality and, con- touch: autism and, 274, 27778; cerebral
struction of, 7374; future research, palsy and, 34749; as communication
8283; morality and legitimacy and, medium, 14547, 15762; hugging,
parents evaluation of, 7879; as rite 145, 161; queerness of, 146; sexological
of passage into full sexuality, 8182; body studies and hierarchical struc-
sample population of, 7172; scale tures, 151
model world or veiled margin and, tourism, medical, 18384
8384; seraphic idiot and Mephisto- Toxic Animacies, Inanimate Affections
phelic idiot figures and, 6971; triple- (Chen), 13
identity conception and, 7576; toxicity and post-identity politics, 13
triple-sexuality model and, 7678. Toyota Motor Manufacturing v. Williams,
See also race, disability, and sexual 67
menace narratives Trachtenberg, Peter, 32223
Stevens, Bethany, 23 transgender and transsexuals: definition
416 Index
of, 205n1; erotics and, 2023; ethno- Warner, Michael, 280n1
centrism and, 206n14; faafafine Poly- Washington, Mary Helen, 107n8
nesians and, 19596; Halberstam on, Washington Post, 21, 24
265; intersexuality compared to, 193; The Waste Land (Eliot), 123, 130, 139
medicalization and, 19396; oppres- Waxman-Fiduccia, Barbara Faye, 33n2,
sion of, 199200; pregnancy case 41
of Thomas Beatie and, 125; sexual- Weeks, Jeffrey, 3738
political interdependence and, 2035 White, Patrick, 161
Tremain, Shelley, 314 Why I Burned My Book and Other Essays
Trent, James, 99 on Disability (Longmore), 56
Triea, Kiira, 191 Wiegman, Robyn, 95
truthtelling and risk, 226 Wildman, Stephanie M., 289
twelve-step programs, 31819, 324, 328 Wilensky, Amy, 46
Wilkerson, Abby, 38
ugly laws, 311n9 Wilkerson, William, 59
Ulysses (Joyce), 12930 Williams, Donna, 26770
universalizing and minoritizing, 2223, Williams, Raymond, 187
33n5 Wojnarowicz, David, 17980
womb envy, 128, 143n6
Vahldieck, Andrew, 48 womens studies, 242
Vaid, Urvashi, 208 Wood, Thelma, 135, 144n15
Velasco, Sherry M., 126, 143n6, 144n18 work: Bush (G. H. W.) on AdA and, 25;
violence as face of oppression, 199 cross-border, 16870; legitimacy
visual rhetorics: Garland-Thomson on, and, 2526, 3032; Murderball and,
10910, 12021; in Malets The History 178; sexology and rehabilitation and,
of Sir Richard Calmady, 11115 15455
Wright, Kai, 21213
Wade, Cheryl Marie, 45
Waldrep, Christopher, 106n6 Young, Iris Marion, 196200
Walker, Alice, 107n8 Youngman, Henny, 292
Walter Reed Medical Center, 177
Want (film), 353n21 Zahedi, Caveh, 323
Ward, Ned, 143n3 Zupan, Mark, 167, 17374
Index 417
robert mCruer is professor of English at the George
Washington University.
anna mollow is a PhD candidate in English at the University

of California, Berkeley.
Chapter 1 was previously published as chapter 7, A Sexual Culture

for Disabled People, in Disability Theory, by Tobin Siebers (Ann
Arbor: University of Michigan Press, 2008), 13556.
An earlier version of chapter 5 was previously published as

Cripsploitation: Desire, the Gaze, and the Extraordinary Body in
The History of Sir Richard Calmady, in Nineteenth Century Gender
Studies 4.2 (Summer 2008).
An earlier version of chapter 6 was previously published as

Pregnant Men: Modernism, Disability, and Biofuturity in Djuna
Barnes, in Novel 43.2 (2010), 20726.
Chapter 15 was previously published as chapter 6, Obsessive Sex

and Love, in Obsession: A History, by Lennard J. Davis (Chicago:
University of Chicago Press, 2008), 16181.
A quote from the poem Femininity by Mark OBrien in chapter

14 was provided by the Mark OBrien papers, the Bancroft Library,
University of California, Berkeley.
Library of Congress Cataloging-in-Publication Data

Sex and disability / Robert McRuer and Anna Mollow, eds.
p. cm.
Includes bibliographical references and index.
iSbn 978-0-8223-5140-5 (cloth : alk. paper)
iSbn 978-0-8223-5154-2 (pbk. : alk. paper)
1. People with disabilitiesSexual behavior.2. Sociology of
disability.3. Sex (Psychology)4. Disability studies.I. McRuer,
Robert, 1966II. Mollow, Anna, 1970
hQ30.5.S462012
306.7087dc23
2011027507

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What is the book about?

What is the book about?

What topics are covered in Part I?

What topics are covered in Part I?

Sex and diSability

Sex and diSability

RobeRt McRueR and anna Mollow, editoRs

1 A Sexual Culture for Disabled People/37

2 Bridging Theory and Experience: A Critical-Interpretive

3 The Sexualized Body of the Child: Parents and the Politics

4 Dismembering the Lynch Mob: Intersecting Narratives

5 That Cruel Spectacle: The Extraordinary Body Eroticized

6 Pregnant Men: Modernism, Disability, and Biofuturity/123

7 Touching Histories: Personality, Disability, and Sex in the

Part iii: SPaCeS

8 Leading with Your Head: On the Borders of Disability,

9 Normate Sex and Its Discontents/183

10 Im Not the Man I Used to Be: Sex, hiv, and Cultural

Part iv: liveS

11 Golem Girl Gets Lucky/231

13 Sex as Spock: Autism, Sexuality, and Autobiographical

14 Is Sex Disability? Queer Theory and the Disability Drive/285

15 An Excess of Sex: Sex Addiction as Disability/313

16 Desire and Disgust: My Ambivalent Adventures

17 Hearing Aid Lovers, Pretenders, and Deaf Wannabes:

In December of 2004 we had the honor of participating in a Modern Language

2 Anna Mollow and Robert McRuer

4 Anna Mollow and Robert McRuer

6 Anna Mollow and Robert McRuer

I understand what youre saying about personal experience, although I

8 Anna Mollow and Robert McRuer

3. I have sometimes literally boarded a plane early on disability in order

Despite the body of evidence Robert cited in support of an identity claim he

10 Anna Mollow and Robert McRuer

12 Anna Mollow and Robert McRuer

14 Anna Mollow and Robert McRuer

16 Anna Mollow and Robert McRuer

Each of the three chapters in Lives performs or analyzes autobiographical writ-

I go jogging every other day, a quintessentially able-bodied activity, one

18 Anna Mollow and Robert McRuer

The second time I was confronted about parking in a handicapped spot

20 Anna Mollow and Robert McRuer

22 Anna Mollow and Robert McRuer

Much of the import of Annas story hinges on the notion of a minoritized

24 Anna Mollow and Robert McRuer

A man is a worker. If he is not then he is nothing. Joseph Conrad

Even as some sectors of neoliberal capitalism embraceor at least tolerate

26 Anna Mollow and Robert McRuer

28 Anna Mollow and Robert McRuer

30 Anna Mollow and Robert McRuer

32 Anna Mollow and Robert McRuer

34 Anna Mollow and Robert McRuer

a Sexual Culture for diSabled PeoPle

Sexual Culture for Disabled People 39

no walkS on tHe beaCH

I am looking for an intelligent, literate woman for companionship and, perhaps,

Sex always happens somewhere. We go to certain places to fall in love or to

We watched a movie about disability and sexuality. The movie consisted

Sexual Culture for Disabled People 41

Private PartS in PubliC PlaCeS