A Plague of Pariahs: AIDS, Stigma, and the Meaning of Disease

A Plague of Pariahs: AIDS, Stigma, and the Meaning of Disease Thomas Lawrence Long Associate Professor-in-Residence Introductions • What is your background and your goal for today? Headline News • Chu h: Do t Judge Those with HIV/AIDS (Manila, Philippines) • New Theory Blames HIV/AIDS on the Collapse of Socialism (Havana, Cuba) • Judge Orders End to HIV Prison Segregation in Alabama (Birmingham, AL) • Religious Leaders Blamed for HIV/AIDS Stigmatisation (Ghana) Stigma • Based on your clinical practice or research expertise, what is stigma in a healthcare setting? • < Latin stigma, < Greek στίγμα mark made by a pointed instrument, brand – 1. A mark made upon the skin by burning with a hot iron, as a token of infamy or subjection; a brand. – 2. a. fig. A mark of disgrace or infamy; a sign of severe censure or condemnation, regarded as impressed on a pe so o thi g; a a d . – 4. pathol. A morbid spot, dot, or point on the skin, esp. one which bleeds spontaneously. (OED) Pariah • < Tamil paṟaiyaṉ, Malayalam paṟayan, lit. he edita y drummer . – 1. A member of a scheduled tribe of South India concentrated in southern Kerala and Tamil Nadu, originally functioning notably as sorcerers and ceremonial drummers and also as labourers and servants, but later increasingly as u tou ha les i i sa ita y o upatio s. – 2. a. A member of any low caste; a person of no caste, an outcaste. – 2. b. A member of a despised class of any kind; someone or something shunned or avoided; a social outcast. (OED) Stigma, Pariah, Scapegoat: Nazi Concentration Camp Classification Emblems (National Holocaust Memorial Museum) Theoretical Approaches • • • • • • Psychology Sociology Social psychology Anthropology Medical anthropology Culture and media studies Culture & Media Studies • Signification – signs, discrete units • Representation – systems, how signs work, how ultu es i o the sel es • Media – speech, writing, gesture, vesture, space, image, film, video, sound . . . • Power – cultural capital, vested interests, ideology, influence AIDS & Culture • I o t ast to a e , u de stood i a modern way as a disease incurred by (and revealing of) individuals, AIDS is understood in a premodern way, as a disease incurred by people both as individuals and as members of a isk g oup —that neutral-sounding, bureaucratic category which also revises the archaic idea of a tainted community that illness has judged [ y e phasis]. --Susan Sontag (1988, 1989) AIDS & Culture • . . . [T]he dialogue a out i fe tio follo s the dialogue a out the o u ity s ultu al p oje t. . . When the poor are perceived as a distinctive sub-culture the central community will be more likely to respond punitively, attacking its dissidents and deviants in the name of stemming the spread of infection [my emphasis]. The best protection for the victims of plague will be a community that has already taken social justi e to hea t. –Mary Douglas (1990) AIDS & Culture • [The] u o p o isi gly edi al a gu e t . . . has had value and power for the AIDS epidemic that must not be minimized. Continually eluding such containment efforts, however, the AIDS epidemic has produced a parallel epidemic of meanings, definitions, and attributions [my emphasis]. This semantic epidemic, which I have come to call an epidemic of signification, has ot di i ished --Paula Treichler (1999) AIDS & Culture • Of all the deadly i fe tious diseases . . . acquired immune deficiency syndrome (AIDS) is perhaps the most culturally constructed one [my emphasis], whose ever-shifting etapho s elati e to ea h so iety s attitudes and behaviors are intimately connected with the clinical and biological manifestations of the disease. –John Aberth (2011) AIDS & American Apocalypticism • Historic conflations – – – – sodomy = doom heresy = perversion sin = sickness sickness = contagion – – – – Exile (alienation) Jeremiad Armageddon Paradise • Tropes A Plague of Pariahs: AIDS and the Rhetoric of Dissent • Outsider status is not always a passively borne scapegoat role but an exercise in autonomy, agency (power). • Cultural dissent, gender/sex dissent, epidemiological dissent, health research dissent, health practice dissent American Dissenting Pariah • Al ight the I ll go to hell AIDS & Stigma • Classes of persons – homosexual men, IV drug users, immigrants, racial minorities • Behavior • – anal sex, IV drug use The ha dest thi g about an AIDS diagnosis is persuading your pa e ts that you e Haitia . Competing Cultural Representations • Demonizing • Normalizing • Counter-demonizing Attack of the Reaganauts! • Republican Political Conservatism (Ronald Reagan and George H.W. Bush presidencies [1981-1993]) – • He as as p o-life, pro-family, pro-national defense and proIsrael--as e e e. –Rev. Jerry Falwell Religious Conservatism (Jerry Falwell and the Moral Majority) – "Those poor, dumb fairy demonstrators . . . . If they weren't out there, I'd have to invent them." (Rev. Jerry Falwell to Dr. Mel White) Sen. Jesse Helms (R-NC) • "The government should spend less money on people with AIDS because they got sick as a result of deliberate, disgusting, revolting conduct." An Early Frost (1985) Parting Glances (1986) Longtime Companion (1990) Philadelphia (1993) Health Education • De-gaying and universalizing HIV – We e all li i g ith AID“. • F o gay to M“M (men who have sex with men) – Gay is stig atized i some communities, so culturally appropriate outreach and education specific to that community, addressing behavior. Embracing Your Inner Pariah • Dissidents: Gender, sex, health practices, health research protocols • Faggot a d uee become for some sexual minority communities hat igge e a e for hip-hop communities. )i es fo Diseased Pa iahs & Infected Faggots • Not every HIV-infected or HIV-affected person identifies with these pasteurized and homogenized images. • Not every HIV-infected or HIV-affected person wants to affiliate with the illusion of what Wojnarowicz alled the o e-t i e atio of consumer capitalism. • Not every HIV-infected or HIV-affected person endows health professionals with authority. • U de g ou d fa zi es zines), cheaply produced, counter representations. Infected Faggot Perspectives Diseased Pariah News Demonizing Medicine • Roy Cohn and his physician http://youtu.be/98fBiO VEcyI • Roy Cohn and his nurse, Belize http://youtu.be/9_UIzA TWrU8 Demonizing Medicine • BELIZE: This didn't come from me and I don't like you but let me tell you a thing or two: They have you down for radiation tomorrow for the sarcoma lesions, and you don't want to let them do that, because radiation will kill the T-cells and you don't have any you can afford to lose. So tell the doctor no thanks for the radiation. He won't want to listen. Persuade him. Or he will kill you. • ROY: You're just a fucking nurse. Why should I listen to you over my very qualified, very expensive WASP doctor? • BELIZE: He's not queer. I am. » Tony Kusher, Angels in America Demonizing Medicine • BELI)E to ‘oy Coh : I do t k o hat strings you pulled to get in on the [AZT] trials. . . . Wat h out fo the dou le li d. They ll want you to sign something that says they can gi e you M&M s i stead of the eal d ug. You ll die, ut they ll get the ki d of statisti s they can publish in the New England Journal of Medicine. » Tony Kusher, Angels in America Demonizing Politicians Demonizing Religious Figures Suggested Reading • • • • • • • Aberth J. AIDS. Plagues in World History. Lanham, MD: Rowman & Littlefield; 2011: 135-177. Douglas M. The self as risk-taker: a cultural theory of contagion in relation to AIDS. Risk and Blame: Essays in Cultural Theory. London: Routledge; 1992: 102-121. Girard R. The Scapegoat. Freccero Y, trans. Baltimore: Johns Hopkins University Press; 1986. Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster; 1963. Jones E, Farina A, Hastorf A, Markus H, Miller D, Scott R. Social Stigma: The Psychology of Marked Relationships. New York: Freeman; 1984. Sontag S. Illness as Metaphor and AIDS and Its Metaphors. New York: Picador; 1977, 1978, 1988, 1989. Treichler PA. How to Have Theory in an Epidemic: Cultural Chronicles of AIDS. Durham, NC: Duke University Press; 1999.