Schizophrenia Bulletin vol. 35 no. 2 pp.

370–380, 2009
doi:10.1093/schbul/sbn175

Recovery From Schizophrenia: With Views of Psychiatrists, Psychologists, and

Others Diagnosed With This Disorder

Frederick J. Frese, III1,2, Edward L. Knight3, and said to first to have used the term, schizophrenia, also
Elyn Saks4,5 emphasized this disease’s downward course. These early
2
Department of Psychiatry, Northeast Ohio Universities College of pioneers did allow for the possibility of some improve-
Medicine, Rootstown, OH 44272; 3Value Options, Colorado ment for those with the condition, but Kraepelin tended
Springs, CO 80920; 4University of Southern California Gould to see any such improvements as temporary remissions.
School of Law, Los Angeles, CA 90089; 5Department of Psychiatry Bleuler had a similarly pessimistic view of the possibility

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University of California, San Diego, School of Medicine, La Jolla, of recovery, using the terms, ‘‘recovery with defect’’2(p186)
CA 92093
and ‘‘healing with scarring,’’2(p263) to describe the occa-
sional patients who were seen to be returning toward
normal functioning.
As the concept of schizophrenia began to develop over a cen-
Despite allowing for the possibility of some degree of
tury ago, it was accompanied by little hope of recovery. As
recovery, these, and other early writers, overwhelmingly
the second half of the 20th century began, new treatments
emphasized the high likelihood of deterioration for per-
and changing social conditions resulted in most long-term
sons with schizophrenia. As a result, this pessimistic view
patients being discharged into the community. Many of
of the condition has dominated the psychiatric profes-
these expatients showed more improvement than had
sion’s attitude toward this disease until fairly recently.
been expected. Treatment approaches evolved to help these
The pessimistic Kraepelin/Bleuler perspective concern-
persons live better lives in the community. In the recent
ing the prospect of recovery from schizophrenia that pre-
past, psychosocial and psychiatric rehabilitation
vailed during the early 20th century began to change with
approaches to treatment have increasingly incorporated
the discovery and introduction of antipsychotic medica-
perspectives of persons in recovery. These perspectives
tions in the 1950s. One result of this nascent optimism
are explored with emphasis on how they have helped drive
was the discharge to the community of the vast majority
federal government and other perspectives on recovery.
of those who were institutionalized because of their dis-
Particular attention is given to the varying views of
orders. Indeed, as the 21st century began, over 95% of
psychiatrists, psychologists, and other highly trained per-
those who were or would have been in government psy-
sons who have themselves been diagnosed and treated for
chiatric hospitals were then ‘‘living in the community.’’
schizophrenia.
The early pessimistic view is also not reflected in the
current ‘‘Diagnostic and Statistical Manual of Mental Dis-
Key words: recovery/rehabilitation/consumer/survivor
orders IV-TR,’’ which lists ‘‘course’’ indicators of the dis-
order that contemplate complete recovery or interepisode
remissions. Still, many mental health professionals
Early Background remain pessimistic.
Recovery from schizophrenia is a concept that has
evolved considerably since the early identification of
From the Medical (Disease) Model to the Rehabilitation
this psychiatric condition. Emil Kraepelin,1 who is gen-
Models
erally given credit as being the first to describe the con-
dition we now call schizophrenia, characterized the The increasing presence of seriously mentally ill persons
disease as one of inevitable deterioration. Kraepelin in the community gave rise to the recognition that al-
saw this disease as one that resulted in ‘‘profound’’ though some persons with schizophrenia and similar dis-
and ‘‘terminal’’ dementia. Indeed, his term for the condi- orders could function, to varying degrees, in society
tion was dementia praecox. Eugen Bleuler,2 the individual despite their conditions, it quickly became clear that there
were difficulties reintegrating serious mentally ill persons
1
To whom correspondence should be addressed; tel: 330-762- into society. Initially, this problem was addressed by
3500, fax: 330-252-3024, e-mail: [email protected]. caretakers focusing on social as opposed to medical
Ó The Author 2009. Published by Oxford University Press on behalf of the Maryland Psychiatric Research Center. All rights reserved.
For permissions, please email: [email protected].
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 Recovery From Schizophrenia

aspects of the disorder. The primary goal of care became some of the more educated or articulate of these ‘‘persons
to increase former patients’ ability to ‘‘function’’ in soci- in recovery’’ began to produce reports about their own
ety, as opposed to the traditional focus on attempting to personal experiences, perceptions, and opinions concern-
diminish or eliminate the symptoms of the disorder. In- ing their experiences of recovery. These perceptions and
terestingly, the term, function, began to include the opinions came from collective as well as individual per-
resources, as well as the skills needed, to succeed in an spectives and were frequently quite different from those
environment. The term ‘‘psychosocial rehabilitation of the professionals who had been managing and deliv-
(PSR)’’ started to be used to describe this approach, ering mental health services. Increasingly, the voices of
which stressed the ‘‘rehabilitation’’ of those with the dis- recovering persons began to demand that their own per-
ability, as opposed to medical ‘‘treatment’’ of the disease. spectives and their developing goals should take on more
Importantly, stated principles of PSR included emphasis importance than just being additional elements of recov-
on ‘‘client choice,’’ ‘‘strengths,’’ and ‘‘empowerment of ery. Indeed, many of the more strident voices of these re-
consumers.’’ covering persons characterized the treatment they had
Before long, it became apparent to many that ‘‘psycho- experienced as oppression, often viewing professionals
social’’ aspects of these disorders could not be divorced as part of the oppressive mental health system. Increas-
from medical considerations. Increasingly, the impor- ingly, these voices began to demand that their views be-

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tance of wellness and a ‘‘holistic approach’’ became to come a stronger force in the determination of their
be recognized, and aspects of medical management journeys to recovery.
were enveloped into the PSR concept. As attention to JudiChamberlin,8,9 SallyZinman,10 andtheirassociates11
both medical and social factors began to merge, the were some of the early, articulate, ‘‘persons in recovery’’ to
term ‘‘psychiatric rehabilitation’’ was coined to reflect begin to produce published materials concerning consumer
this integration of social and medical perspectives. perspectives of their psychiatric conditions. As time went by,
It is important to recognize that this psychiatric reha- numerous additional consumer voices began to be heard,
bilitation approach included attention to psychiatric and a virtual national consumer movement began to de-
symptoms, as well as attention to such skills as self- velop.12 Often, these consumer perspectives focused on
maintenance activities, vocational skills, using public demanding changes in how they were cared for and in
transportation, social interaction skills, and similar vari- how they were perceived by society in general. Increasingly,
ables.3–5 Also, the concepts of consumer choice and em- consumer voices began to incorporate a call for political,
powerment began to be seen as important aspects of one’s as well as mental health-care, changes.
ability to function. Overall, the psychiatric rehabilitation Jacobson,13 in an overview where she purports to reflect
approach seemed to allow for more optimism that persons these consumer perspectives, has argued that from a policy
with psychiatric disabilities could improve and increas- perspective there is an aspect of recovery in addition to the
ingly integrate into society, even if they continued to medical and rehabilitation approaches. Jacobson sees 2
exhibit some of the symptoms of their disorders. ideologically driven, polarized views of recovery, differing
primarily in the extent to which they emphasize individual
or social transformation. She refers to viewing recovery as
From the Rehabilitation to the Recovery Approach
a process of symptom reduction (medical model), and/or
As the focus of care was expanding to include input from of functional improvement and normalization (psycho-
those with the psychiatric conditions, some of the persons social or rehabilitation model), as being ‘‘mainstream’’
who had been diagnosed and treated for these conditions views. She sees these views as being primarily those of in-
began to organize. Local groups were put together with dividual change, which she contrasts with a more radical
such names as the Insane Liberation Front, established in perspective that she sees as almost entirely a matter of so-
Portland, Oregon, in 1970. New York City’s Mental cial change. Jacobson sees the focus on clinical improve-
Patients’ Liberation Project and Boston’s Mental ment and functional normalization as being of primary
Patients’ Liberation Front were both founded the follow- concern to the psychiatric profession and other ‘‘elite’’
ing year. In 1973, the first national meeting of such rights professionals along with their allies, the pharmaceutical
groups was held in Detroit. This gathering was referred to manufacturers.13(p164) She contrasts this with seeing re-
as the Conference on Human Rights and Psychiatric Op- covery as primarily being a matter of social transforma-
pression that met every year through 1985. At these ses- tion, a view she sees as being linked closely with that of the
sions, the participants strategized, focusing primarily on disability rights movement.
how to gain more dignity and freedom for persons who Others also see ‘‘recovery’’ as having both radical and
had experienced what they saw as cruel and demeaning more mainstream interpretations. The psychiatrist
treatment from those in control of the mental health sys- Anthony Lehman14 describes this dichotomy a little more
tem that had afforded them few rights and subjected them ominously. He refers to recovery not only as being a loaded
to what they saw as bizarre and often cruel mistreat- word conveying an optimistic message leading to healthy
ments.6,7 Not long after the first organizational meeting, fulfilling lives but also a word that can be interpreted
371
F. J. Frese et al.

as signaling that patients are victims of an oppressive ‘‘Mental health recovery is a journey of healing and
mental health establishment from which they should transformation enabling a person with a mental health
be freed. problem to live a meaningful life in a community of
As the advocacy voices of consumers were beginning to his or her choice while striving to achieve his or her
emerge in the early 1990s, William Anthony,15 who had full potential.’’17
been championing a psychiatric rehabilitation model ap- Additionally, emerging from the consensus conference
proach to addressing the needs of persons with psychiat- was a statement of ‘‘The 10 Fundamental Components of
ric disorders, expanded his view of the concept of Recovery.’’ These components were identified and explic-
psychiatric rehabilitation. Anthony’s expanded view itly described in the document produced by SAMHSA in
paid much more attention to concerns being articulated the following manner:
by recovering persons. He issued a call for recovery to
become the ‘‘guiding vision’’ as to how we go about struc-  Self-direction. Consumers lead, control, exercise choice
turing our approach to caring for those with psychiatric over, and determine their own path of recovery by op-
disabilities. This vision has evolved into what many timizing autonomy, independence, and control of
observers characterize as the recovery model. It is impor- resources to achieve a self-determined life. By defini-
tant to realize that by emphasizing the importance of con- tion, the recovery process must be self-directed by

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sumer views, which often strongly emphasized the call for the individual, who defines his or her own life goals
societal changes including a transformation of the mental and designs a unique path toward those goals.
health care delivery system, the emerging recovery move-  Individualized and person centered. There are multiple
ment necessarily embodied calls for the societal (political) pathways to recovery based on an individual’s unique
changes mentioned by Jacobson, as well as calls for im- strengths and resiliencies as well as his or her needs,
proved medical and rehabilitative care. preferences, experiences (including past trauma), and
cultural background in all its diverse representations.
Individuals also identify recovery as being an ongoing
Impact of the Recovery Perspective on the Mental Health
journey and an end result as well as an overall para-
Delivery System
digm for achieving wellness and optimal mental health.
During the past half century, we as a society have clearly  Empowerment. Consumers have the authority to
evolved from a position where recovery for persons with choose from a range of options and to participate in
schizophrenia was not seen as a reasonable expectation to all decisions—including the allocation of resources—
one where some form of recovery is not only seen as pos- that will affect their lives and are educated and sup-
sible but, indeed, is expected. One very significant indica- ported in so doing. They have the ability to join
tion of the impact of this new view occurred with the with other consumers to collectively and effectively
report of the President’s New Freedom Commission speak for themselves about their needs, wants, desires,
(NFC) in 2003.16 This report designated recovery as and aspirations. Through empowerment, an individual
the single most important goal in its call for the transfor- gains control of his or her own destiny and influences
mation of the American mental health service delivery the organizational and societal structures in his or her
system. This was a remarkable development. life.
Although the NFC emphatically states that recovery  Holistic. Recovery encompasses an individual’s whole
was to be the major goal of the transformed system, life, including mind, body, spirit, and community. Re-
not surprisingly, there appeared to be various perspec- covery embraces all aspects of life, including housing,
tives as to the meaning of the term, recovery. A major employment, education, mental health and health-care
attempt at forging a working definition of recovery treatment and services, complementary and naturalis-
was addressed on December 16 and 17, 2004, at a consen- tic services, addictions treatment, spirituality, creativ-
sus conference held by the Center for Mental Health ity, social networks, community participation, and
Services of the Substance Abuse and Mental Health Serv- family supports as determined by the person. Families,
ices Administration (SAMHSA), a division of the US providers, organizations, systems, communities, and
Department of Health and Human Services. Participants society play crucial roles in creating and maintaining
at this conference included a large proportion of persons meaningful opportunities for consumer access to these
in recovery from schizophrenia and other serious mental supports.
illnesses including Patricia Deegan, Daniel Fisher, and  Nonlinear. Recovery is not a step-by-step process but
Fred Frese, all mentioned below. Additionally, family one based on continual growth, occasional setbacks,
members, administrators and professionals from various and learning from experience. Recovery begins with
mental health entities, and other interested parties an initial stage of awareness in which a person recog-
attended. The following ‘‘national consensus statement nizes that positive change is possible. This awareness
on mental health recovery’’ emerged from the delibera- enables the consumer to move on to fully engage in
tions that transpired at the conference. the work of recovery.
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 Recovery From Schizophrenia

 Strengths based. Recovery focuses on valuing and ified and updated with an eye toward streamlining imple-
building on the multiple capacities, resiliencies, talents, mentation in VA Medical Centers and Clinics with the
coping abilities, and inherent worth of individuals. By issuance of a VHA Handbook for Uniform Mental
building on these strengths, consumers leave stymied Health Services.18 Interestingly, this most recent VHA
life roles behind and engage in new life roles (eg, part- document stresses the importance of the definition of re-
ner, caregiver, friend, student, employee). The process covery, and its 10 components articulated in the report of
of recovery moves forward through interaction with the SAMHSA consensus conference.
others in supportive, trust-based relationships. Clearly, the view of recovery articulated by these fed-
 Peer support. Mutual support—including the sharing eral agencies is highly reflective of the views articulated
of experiential knowledge and skills and social lear- by those who have had personal experience recovering
ning—plays an invaluable role in recovery. Consumers from these disorders. Indeed, the SAMHSA document
encourage and engage other consumers in recovery and is so focused on the perspective of the recovering person
provide each other with a sense of belonging, support- that, to some, there seems to be relatively little attention
ive relationships, valued roles, and community. to the nature of the condition from which the person is re-
 Respect. Community, systems, and societal acceptance covering. An examination of the how the recovery concept
and appreciation of consumers—including protecting is being articulated in the definition and components being

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their rights and eliminating discrimination and stig- proffered by federal government agencies reveals that there
ma—are crucial in achieving recovery. Self-acceptance is particular importance given to the subjective views of the
and regaining belief in one’s self are particularly vital. persons in recovery. The terms, ‘‘self-direction’’, ‘‘person-
Respect ensures the inclusion and full participation of centered’’, and ‘‘hope’’, strongly suggest that the final ar-
consumers in all aspects of their lives. biter of whether recovery is occurring is the person who is
 Responsibility. Consumers have a personal responsibil- experiencing the process of recovery.
ity for their own self-care and journeys of recovery. Tak- A fairly strong secondary focus in the federal agencies’
ing steps toward their goals may require great courage. characterization of recovery is the inclusion of what ap-
Consumers must strive to understand and give meaning pear to be societal or political considerations. The
to their experiences and identify coping strategies and descriptions of peer support, empowerment, and respect
healing processes to promote their own wellness. all relate to the individual’s interactions with others, in-
 Hope. Recovery provides the essential and motivating cluding cooperation with other consumers as well as call-
message of a better future—that people can and do ing for a significant change in how consumers are
overcome the barriers and obstacles that confront perceived by clinicians, providers, and others in the
them. Hope is internalized but can be fostered by peers, broader society.
families, friends, providers, and others. Hope is the cat- It is important to recognize that this federal accentu-
alyst of the recovery process. Mental health recovery ation of the subjective and societal factors relevant to re-
not only benefits individuals with mental health dis- covery is a substantial broadening and alteration of both
abilities by focusing on their abilities to live, work, the medical and the rehabilitation approaches to treat-
learn, and fully participate in our society but also ment. Diminishing symptoms and increasing an individ-
enriches the texture of American community life. ual’s ability to function both lend themselves to objective,
America reaps the benefits of the contributions individ- scientific measurement of observable processes and fac-
uals with mental disabilities can make, ultimately be- tors that are presumably changing for the individual.
coming a stronger and healthier nation. The federal focus on the subjective and societal factors
involved in recovery significantly overshadows the atten-
Although SAMHSA has been designated as the lead tion traditionally afforded the medical and functional
federal agency in implementing the recovery approaches limitations of psychiatric disabilities.
to mental health treatment, the federal agency that has
probably been most aggressive in shifting its resources to-
Implications for and Involvement of Schizophrenia
ward a recovery approach has been the Veterans Health-
Professionals
care Administration (VHA) of the Department of
Veterans Affairs (VA). Shortly after the President’s Reflecting on the impact of the recovery concept, and
NFC’s recommendations were issued, the Serious Men- considering how important the consumer perspective
tally Ill Committee of the VHA began to develop a Mental has been in its development, what are some major mes-
Health Strategic Plan incorporating the recovery vision. sages for those referred to by Jacobson as the ‘‘elite pro-
This plan developed over an extended period was signed fessionals,’’ working in the area of schizophrenia? How
by the undersecretary in 2004 and has been in the process does one accommodate the predominantly subjective
of being implemented by the vast mental health delivery and politically oriented recovery model into the objective,
system of the VHA. Recently, this recovery oriented; scientific approach of professionals working in the field
Mental Health Strategic Plan of the VHA has been mod- of schizophrenia? One avenue to explore in answering
373
F. J. Frese et al.

this question could be the realization that some of these recommendation was that the mental health system in
so-called professional elites are themselves persons who the Untied States be transformed in such a manner
have been diagnosed with and treated for schizophrenia. that the major goal for the transformed system would be-
Because of the obvious downside consequences of reveal- come ‘‘recovery’’ for persons with serious mental ill-
ing that one has a personal history with schizophrenia, it nesses. Further details concerning Fisher’s advocacy
is likely that most professionals in this category are un- activities can be found at www.power2u.org.
likely to publicly identify themselves, particularly those Elizabeth Baxter, MD, is a psychiatrist who identifies
younger professionals, for whom such revelations could herself as being diagnosed with schizoaffective disorder.
be career damaging. However, during the past few deca- Baxter24 relates that she has been hospitalized several
des, there have been a number of highly trained profes- times for her psychiatric condition, twice toward the
sionals who, for various reasons, have been willing to end of her psychiatric residency training. She relates
be open and even publish materials related to their that at one time her doctors indicated that the most she
conditions and the process of their recoveries. ‘‘would ever recover would be the ability to put objects
Indeed, it turns out that many of those who were lend- into boxes on an assembly line.’’24(p32) She25(p1298) refers
ing their voices to those of the rising consumer advocacy to ‘‘my recovery’’ and ‘‘bright recovery’’ and attributes
movement were persons who, despite having been diag- her recovery to her persistence, the encouragement of

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nosed with, and undergone treatment for, schizophrenia friends, family and caregivers, and spiritual growth.
or schizoaffective disorder, eventually were able to attain Although Baxter has published and given numerous
sufficient appropriate education to become certified in presentations discussing her personal experiences with
the mental health field and work as professionals. psychosis, in consumer circles she is well known as the
Many of these persons in recovery became nurses, social cocreator, with Sita Diehl,26,27 of BRIDGES: A Peer Ed-
workers, occupational therapists, and other mental ucation Program. BRIDGES, an acronym for, Building
health professionals. Some had even been able to com- Recovery of Individual Dreams and Goals through Ed-
plete doctoral level training and function as psychiatrists, ucation and Support, is a structured peer education pro-
psychologists, or other professionals in the field. This lat- gram based on the belief that those with mental illness
ter category includes the following. ‘‘can and do recover a new and valued sense of self
and purpose.’’ BRIDGES was designed with input
from over 100 persons in recovery and is facilitated by
Psychiatrists and offered to persons recovering from mental illness
Carol North, MD, was one of the earlier psychiatrists to throughout the country. BRIDGES draws heavily both
self-identify as having been diagnosed with and treated for from Diagnostic and Statistical Manual of Mental Disor-
schizophrenia. Her book, Welcome Silence: My Triumph ders and other scientifically oriented descriptions of seri-
over Schizophrenia,19 details her experiences as a young ous mental disorders and from writings of other persons
person diagnosed with schizophrenia and having the delu- in recovery. The program not only focuses on identifying
sions and other symptoms associated with the condition. traditional and other symptoms of mental illness but also
In her book, North relates her experience of recovery, but embodies personal and advocacy perspectives.
she attributes her recovery primarily to dialysis. However,
she goes on to explain that research has failed to show that
dialysis is a remedy for schizophrenia despite her experi- Psychologists
ence with this procedure. North is particularly sensitive Patricia Deegan, PhD, a psychologist, is another of the
to the stigma accompanying serious mental illness. early voices to describe her experiences in overcoming
Dan Fisher, PhD, MD, was another early voice of schizophrenia. Deegan28–32 had been diagnosed with
a person who had been diagnosed with schizophrenia schizophrenia as a teenager, spent considerable time hos-
and began to stress the fact that recovery from schizo- pitalized in a state psychiatric facility, but was neverthe-
phrenia was possible, if not likely. Fisher20–23 had been less able to continue her education, eventually earning
initially diagnosed with schizophrenia while working as a doctorate in psychology from Duquesne University.
a research scientist in the 1960s. Despite this diagnosis Of all the persons in recovery who have gone on to be-
and multiple hospitalizations for this condition, Dan come fairly highly educated mental health providers, Pat-
was able to earn a second doctorate, this one in medicine, ricia Deegan was one of the most effectively articulate.
and went on to complete a psychiatric residency at Har- Deegan stressed that those of us in recovery faced a soci-
vard University. Although Fisher only gradually dis- ety in which discrimination, stigma, and disrespect were
closed his history of being treated and diagnosed with far too common. In a series of published articles, Deegan
schizophrenia,21 he later became one of the appointed began to call for a very different focus regarding the con-
commissioners on the President’s NFC on Mental cept of recovery from serious mental illness.
Health, where his voice was influential in forging the Deegan’s writings stressed that persons in recovery are
major recommendation of the Commission. That not passive recipients of rehabilitation services and in her

374
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words that recovery refers to a ‘‘self pole’’ as opposed to the ment, mutual support, and respectful communication.
‘‘world pole’’ of traditional rehabilitation approaches. Bassman also served a term as president of the National
She describes her experience of psychiatric treatment as Association for Rights Protection and Advocacy.
one of dehumanization and depersonalization, spirit In his writings, Bassman consistently refers to the iat-
breaking, learned helplessness, and of having to overcome rogenic effects of hospital treatment, the damage of hav-
humiliating experiences. Deegan stresses the importance ing a psychiatric label, and the crushed dreams and
of reclaiming and recovering a sense of self after being stigma as being possibly more difficult to overcome
devalued, dehumanized, and degraded. She emphasizes than the original condition, itself.42(p137) He lists hope,
that every journey is unique and that the task is not to be- safe niches, natural supports, reconciliation with family,
come normal but to become who you are and who you are absence of damaging treatment, belief in himself, success-
called to be.29(p11) She also repeatedly calls for social justice ful experiences, meaningful work, psychotherapy, intimate
and civil rights for persons with psychiatric disabili- relationships, and the passage of time as significant factors
ties.29(p9) Recently, Deegan has begun calling for more moving one toward recovery.42(p150–151) For additional in-
of a partnership model in the delivery of mental health formation concerning Bassman’s views and activities, see
treatment, with the partners being the practitioner and www.ronaldbassman.com.
the client. She refers to this approach as a ‘‘shared decision Al Siebert, PhD,(43–45) indicates that he was the first

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making’’ process.30 For further information concerning clinical psychology doctoral graduate from the Univer-
the development of Deegan’s views and activities, see sity of Michigan to be selected for a postdoctoral fellow-
www.patdeegan.com. ship at the Menninger Clinic, then located in Topeka,
F.J.F., PhD, the current senior author, is a psychologist Kansas. Not long after arriving there, however, he was
who has been open and public about his being hospital- hospitalized in the nearby VA hospital and given the di-
ized numerous times for schizophrenia, since making agnosis ‘‘schizophrenic reaction, paranoid type, acute.’’
a presentation about his condition at the Annual Con- He relates how he was kept in a back ward for about
vention of the American Psychological Association.33 4 weeks, after which he left ‘‘against medical advice.’’ In-
Since becoming open about his condition, he has pub- terestingly, Siebert characterizes this experience as
lished works on schizophrenia advocacy, coping skills, a months-long transformational experience that was
recovery, and treatment.34–39 F.J.F.34 argues that recov- the best thing that ever happened to him. In Siebert’s
ering persons should work cooperatively with providers view, ‘‘from 20 percent to 30 percent of the people
so that the mental health delivery system treats the men- who go through a ‘schizophrenic’ period fully and com-
tally ill more effectively but with increased dignity and pletely recover from the condition and can do so with no
respect. In the early 1990s F.J.F. served as president of medications.’’44(p111) More information about Siebert’s
the National Mental Health Consumers’ Association. views and advocacy activities can be found at www.
Also in the capacity of an advocate, F.J.F. has served successfulschizophrenia.org.
on the boards of several national professional and advo-
cacy organizations, including the National Alliance on
Mental Illness (NAMI), the National Industries for the Other Professional Voices
Severely Handicapped (NISH), the Treatment Advocacy In addition to the psychologists and psychiatrists who
Center, and the American Occupational Therapy Asso- have been open and active in helping in the development
ciation, as well as serving on national committees for of the recovery approach to treating their conditions, 3
both the American Psychiatric Association and the other doctoral level professionals, who are not specifi-
American Psychology Association. During the past few cally certified as psychiatrists or psychologists, but
years, he has been serving as a contributor to the who themselves have schizophrenia, have been active
Measurement and Treatment Research to Improve in the mental illness/schizophrenia arena, advocating
Cognition in Schizophrenia (MATRICS) initiative.40 for recovering persons by publishing and making presen-
For more information about activities of F.J.F., see tations about their conditions.
www.fredfrese.com. E.L.K., PhD (sociology), the current second author,
Ron Bassman, PhD,41 was initially diagnosed with indicates that he was first diagnosed with schizophrenia
schizophrenia at age 22. He spent 2 extended periods, in 1969. Since then, he has been hospitalized at least 14 or
of 6 and 7 months, in private and public psychiatric hos- 15 times, in addition to having spent some time being
pitals, respectively, as an inpatient being treated for his homeless. E.L.K.46 readily acknowledges that he takes
condition. Nevertheless, Bassman went on to earn a doc- medication for his condition. Indeed, he states that with-
torate in clinical psychology and later obtained a position out the combination of meditation and medication he
with the New York State Office of Mental Health, where would be in and out of the hospital very frequently.
he participated in the development and implementation E.L.K. believes medications need to be separated from
of a training module for psychiatric staff that emphasized other aspects of the medical model that create helpless-
key recovery themes such as hope, self-help, empower- ness. He believes symptoms are not written in stone,
375
F. J. Frese et al.

but the individual can learn to work with them and alter nosis: grave – the psychiatric equivalent of a death sen-
them in positive directions. Anxiety, eg, can be, as Kier- tence, the assumption that I’d never live or work on my
kegaard pointed out, a spiritual teacher of letting go of own.’’48(pA5) However, she feels that the humanity and
concepts and notions that limit the openness of the pres- dignity of clients should be at the center of the mental
ent. He says that it has now been over 25 years since the health system and stresses that stigma is a major barrier
pivotal point that started his recovery by introducing him for persons in recovery, seeing stigma against schizophre-
to a spiritual practice that empowers him to face his dif- nia as perhaps the most profound of all stigmas.
ficulties. He has taken medications for schizophrenia for E.S. and her colleagues are engaged in studying high-
27 years without interruption. He has also been diag- functioning people with schizophrenia to see if it is pos-
nosed with depression, anxiety disorders, and mania sible to identify strategies they have developed to manage
but currently manages these conditions successfully with- their symptoms, hoping such strategies might be both
out meds. Meditation helps him maintain balance and teachable and effective for others.
lower stress levels in his busy schedule. He practices zazen Professor E.S. serves as a member of the Task Force on
and centering prayer. Without meditation and prayer reg- Serious Mental Illness and Serious Emotional Distur-
ularly, he may get overstressed and develop prodromal bance of the American Psychological Association and
symptoms. He keeps them from returning by focusing as a member of the Board for Mental Health Advocacy

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and letting go of thoughts, ideas, concepts, and images. Services and the Bazelon Center for Mental Health Law.
For ‘‘religiosity’’ or anxiety, eg, he focuses on the breath Robert Miller in 1961 started as a medical student at
and as Dogen, the founder of Japanese Soto Zen, says Oxford University. However, in 1967, he experienced a se-
‘‘Thinks not thinking.’’ That is, he lets go of thoughts. rious psychotic breakdown that put him out of action as
This is similar to the recent development of Acceptance far as developing any other career was concerned, for
and Commitment Therapy of letting go of ‘‘mental boxes.’’ about 3 years. However, in 1973, he obtained his doctor-
When he experiences the prodromal symptoms of mania, ate from Glasgow. After several periods of postdoctoral
such as talking fast or racing thoughts, he mindfully walks study at British universities, he emigrated to New Zea-
slowly and deliberately while letting go of thoughts. As land in 1977 and obtained employment as a lecturer in
with everything, these states of prodromal symptoms the Department of Anatomy and Structural Biology,
pass. They do not worsen or return unless ignored. University of Otago. Robert Miller has for many years
He has not been hospitalized in 25 years. Doctor tried to use his theoretical ideas about normal forebrain
E.L.K. is currently vice president for Recovery, Rehabil- mechanisms to shed light on psychosis and the complex
itation and Mutual Support for Value Options, the sec- disorder called schizophrenia. As a result, he has written
ond largest behavioral managed care company in the many articles on the theory of dopamine-mediated psy-
United States. He is also involved in research, having chosis. He is currently working on an overall theory of
worked with several research centers: University of Cal- schizophrenia, entitled ‘‘A neurodynamic theory of
ifornia, Los Angeles; Boston University; Nathan Kline schizophrenia and related disorders,’’ which he intro-
Institute in upstate New York; and National Research duced at a recent scientific conference.52 Since emigrating
and Development Institutes in New York City. His areas to New Zealand, Miller has worked in collaboration with
of research interest are mutual support, recovery, rehabil- the Schizophrenia Fellowship of New Zealand. He has
itation, and co-occurring substance abuse and mental ill- written autobiographical accounts of his own illness,
ness. For further information about mental health when he was a young man and also has produced an ed-
activities of E.L.K., go to www.professored.com. ucational booklet on schizophrenia. He frequently partic-
E.S., JD47–51, the current third author, is associate ipates in international conferences on schizophrenia
dean and chaired professor of law, psychology, and psy- research, and in 2007, he was given the ‘‘Officer of the
chiatry and the behavioral sciences at the University of New Zealand Order of Merit’’ award ‘‘for services to
Southern California Gould School of Law; Adjunct Pro- schizophrenia research.’’
fessor of Psychiatry at the University of California, San This article of course could neither begin to examine
Diego, School of Medicine; and Assistant Faculty, the the entire spectrum of consumer perspectives on recovery
New Center for Psychoanalysis. E.S. has written several from schizophrenia nor does it purport to adequately
books on mental illness and the law.49–51 Several years portray the views of each of the professionals mentioned
after attaining tenure, E.S. produced a volume where above. However, a cursory look at the selected published
she relates that she openly accepts that she has schizo- comments of these professionals does allow one to draw
phrenia, from which she feels she will never fully recover certain inferences about the impact of these public disclo-
and for which she willingly takes medication.47(p334) (This sures as well as about the perspectives of these professio-
was after many years of resisting the diagnosis and need nals concerning their own recoveries from schizophrenia.
for medication.) Reflecting on some of the difficulties of Unfortunately, there still continues to exist in profes-
her recovery experience, E.S. states that ‘‘Early on after sional circles questions concerning the possibility of recov-
being diagnosed as schizophrenic, I was given the prog- ery from schizophrenia53 and particularly pessimism as to
376
 Recovery From Schizophrenia

the possibility of persons with schizophrenia successfully that traditional cultural, attitudinal, and linguistic bar-
completing academic work at the doctoral level.54 So, the riers to their recovery are important factors that must
fact that these professionals have publicly identified them- be considered and measured as we address the issue of
selves as having been diagnosed and in treatment for recovery. Again, Bassman and Fisher see oppression
schizophrenia, but have nevertheless obtained doctorates by the mental health system and by society in general
and are performing as professionals in the mental health as a primary target for change in order for recovery to
field, in and of itself, sends a strong message. By being open occur. Siebert, who on occasion has denied the existence
about their psychiatric conditions, they are implicitly dem- of schizophrenia in himself or in anyone else, sees the hos-
onstrating that the diagnosis of schizophrenia no longer tility of the mental health profession as the major imped-
means that one will necessarily experience the lifetime cat- iment to recovery for those labeled with this condition.
aclysmic consequences once assumed to accompany the
disorder. Without necessarily being explicit about the is-
Weighing of the Value of Medical, Functional, Subjective,
sue, these professionals are establishing a significant func-
and Societal Factors
tional measure of recovery. And clearly, the greater the
number of persons, especially those in the mental health Concerning the broad range of views of even the most
professions, who are willing to be open, and even public, educated of persons in recovery from schizophrenia, it

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about their conditions, the more normalized schizophre- is not surprising that there exists considerable variation
nia becomes. Such increasing numbers could be viewed concerning the question of relative weighting of the sev-
as positive functional measure of increasing hope for eral approaches to recovery addressed in this article.
others and for diminishing stigma. Medical/biological approaches to psychiatric disabilities
Second, examination of the writings of these professio- include the traditional focus on symptom reducing but
nals reveals a rather wide divergence concerning their increasingly are encompassing other, related health
perspectives on their recoveries and on recovery in gen- issues, such as obesity, cardiovascular illness, hyperlipid-
eral. For example, Miller and F.J.F. see the biological emia, diabetes, and other conditions that may be associ-
correlates of schizophrenia as being important. Fisher, ated with medication side effects, and other issues
Bassman, and Siebert play down or even deny the impor- affecting morbidity and mortality that may accompany
tance of any biological considerations. E.S., Baxter, serious mental illnesses.56,57
F.J.F., E.L.K., and Deegan clearly acknowledge that The measurable functional, psychosocial factors, ie, the
they have had to struggle with, and continue to experi- degree to which individuals can care for themselves and
ence, at least some of the classic symptoms of schizophre- can find a satisfactory role and quality of life in society,
nia. Such symptoms include sometimes experiencing continue to be vitally important, but questions concerning
delusions and hallucinations, as well as apathy, avolu- the degree these matters as viewed by professionals are
tion, and/or other negative symptoms. Others, such as weighted, as opposed to the more subjective and societal
North, Siebert, Fisher, and Bassman downplay or factors embodied in the recovery model, is a matter that
deny that they currently experience any symptomatology. can be approached in a variety of ways by different con-
The latter 3 of these advocates tend to see the need to sumer/survivor advocates. For example, the 3 authors
substantively change health-care and societal conditions, of this article address this question very differently.
in general, as their primary concern. Indeed, Fisher and E.L.K. addresses the question concerning the weighing
Siebert contend that persons diagnosed with schizophre- of these various factors with comments from a global per-
nia can ‘‘completely recover’’ often without the use of spective as well as from his personal experience. He com-
psychotropic medications. Views also vary widely con- ments:
cerning such topics as dangerousness, homelessness, co- In a recent international study of schizophrenia, 60%
operation with family members, and the use of coercive of those with this disorder were working for pay or doing
treatments. Contrary to the view often articulated by significant household labor, 40% were working for pay,
consumer advocates,55 among these consumer/professio- and 20% with moderate to severe disability on Global As-
nals at least, there is no monolithic ‘‘consumer perspec- sessment of Functioning Scale were working for pay. This
tive’’ on many aspects of recovery. latter is called ‘‘mixed recovery’’ by Kim Hopper.58 Pov-
Nevertheless, virtually all these persons stress the dif- erty and unemployment are at least as much a function of
ficulty of overcoming pervasive stigma, hostile attitudes, stereotyping and discrimination of what we label ‘‘bi-
and other societal barriers to their recovery. One strong zarre’’ behavior and fear as a society as a medical com-
message that is voiced by these professionals is that they plication of an illness. Neither does most of India isolate
see a major barrier to their recovery as being how persons people who exhibit such behavior nor do some other
with schizophrenia have been, and continue to be, treated countries, and this is not just rural areas. As American
by society, including treatment by those entrusted with styled culture grows in these areas, it will be interesting
their care. Many do not see that their degree of recovery to see if this continues. The constant barrage of fearful
is primarily a function of how disabled they are but feel images in the media has a lot to do with this.
377
F. J. Frese et al.

E.L.K. indicates that for him, personally, symptom re- of subjective perspectives of those with serious mental ill-
duction is about 95% or better from when he was very ill. nesses. Once again, while the recovery movement stresses
But this is due as much to his zazen practice as medication. the importance of empowerment and related subjective
This practice allows him to carefully observe under what factors, there is clearly wide divergence in the ‘‘educated
conditions prodromal symptoms arise, what sustains consumer’’ community as to the weight to be given to
them, and when they pass away. Due to this, he is able these subjective factors, particularly for the homeless,
to immediately recognize any precursors to delusions or the imprisoned, and the very disabled in general. This
hallucinations such as thought patterns that tend to para- also holds true for the societal/political factors embodied
noia (thinking he knows others’ intentions), racing in the recovery concept, as well.
thoughts, or high anxiety and take appropriate measures. E.S. is somewhere in the middle. As a result of some very
His social functioning is better actually than preillness degrading and painful treatment, E.S. has described her-
(He was painfully shy and withdrawn.) or during illness. self as very ‘‘pro psychiatry but very anti-force.’’ Like
He serves as a vice president of a large corporation, a fact ‘‘medical model’’ people, E.S. believes that mental illness
that he feels speaks for itself. is a medical disease that is often helped by both medication
and therapy. Like more radical consumers, she believes
 Side effects. E.L.K. indicates that he had to get off typ- that force is almost always a bad solution. Yet, she takes

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ical medication and go to an atypical because of signif- these positions for pragmatic reasons, not because she (or
icant dystonia, akathisia, and oculogyric crises. On one anyone else) has a slam dunk argument about the philo-
atypical, he gained a lot of weight and had to switch to sophical issues involved: these views work for her—help
another. He has lost 50 pounds since then with the help her live a good life. E.S. allows that others may be better
of careful diet and exercise. His goal is to lose 15 more served by thinking, eg, that the entire problem is social and
pounds, and he is on course to do that. At that point, he devising social solutions for themselves.
will be at 180 pounds, his preillness weight. This has As for her location on the question of whom the recov-
helped tremendously with fatigue and depression and ery model should be directed toward, she is somewhere
with having energy to do his daily career activities. between E.L.K. and F.J.F. E.S. believes that the appro-
 Subjective weighing. Symptom reductions and learning priate question is one of capacity, where capacity requires
how to ‘‘fit in’’ so as to have ‘‘acceptable’’ behavior by a low level of ability. If someone lacks that low level
current American standards has been crucial to recov- of ability, we do not and should not respect their self-
ery of E.L.K. He is able to monitor what people’s determining choices a la the recovery model; a benign
expectations are and express himself appropriately. other should decide for them. (If you think taking med-
He has social intelligence to a fairly high degree in ication will cause a nuclear explosion, someone else
his estimation while he maintains personal autonomy should decide whether the medicine is right for you.)
and does not introject others’ opinions by trying overly But if the person has that low level of capacity, their de-
to please and thus create resentment in himself. E.L.K. termination of what is best for them should be decisive,
feels he learns very quickly from the consequences of even if the medical profession sees that choice as irrational
his behavior and adjusts quickly. or otherwise substandard. E.S. has devoted a large part of
her career to trying to understand and measure capacity.
One the other hand, F.J.F. takes a very different ap- It is also apparent that some, if not most, of these pro-
proach to the question of weighing the various factors fessionally trained individuals give much more consider-
involved in recovery. F.J.F. relates that he and 3 other ation to the symptoms and functional difficulties that
doctoral level consumer/survivors (the others having have traditionally been seen to accompany schizophrenia
been diagnosed with conditions other than schizophre- than the emphasis these are afforded by the official
nia) have suggested that relative weighing of scientific (SAMHSA) definition of recovery and the listing of com-
vs subjective factors should perhaps be a function of ponents thereof. Baxter, Miller, F.J.F., and E.S. particu-
the degree of disability experienced by the individual larly stress the importance of the biological determinants
with the serious mental illness.59 These authors suggest and concomitants of schizophrenia and other serious
that for very disabled persons, more weight should be mental illnesses.
afforded to evidence-based, scientifically oriented fac- An important point remains, reflected in comments of
tors, but as the person experiences increasing recovery, E.S.—the recovery model’s focus on self-determination
more autonomy (empowerment) should be afforded to may be somewhat at odds with its listing of 9 other fea-
the person in recovery to make their own decisions as tures of the model. An individual consumer may want to
to how they might best determine the nature of their re- be allowed the agency of making his own choice. But his
covery journey. Not surprisingly, some professionals who choice may be to adopt the medical model and ask the
have been diagnosed and treated for serious mental ill- doctor paternalistically to decide for him. His autono-
ness, including Daniel Fisher,60,61 mentioned above, mous choice may be to be nonautonomous. Or he may
have taken issue with this approach to the weighting want to make his own choice but reject that adopting
378
 Recovery From Schizophrenia

a ‘‘holistic’’ approach is a good idea or that ‘‘peer sup- ability on psychological testing, how high a level they
port’’ is an admirable goal. In other words, the focus functioned at before becoming ill (Were they a good stu-
of the recovery model on the individual’s perception of dent?), and perhaps the occupational functioning of fam-
what is good for him may pull against some of the other ily members. None of these is foolproof but may be useful
features of the model. indicators. Studying the views of recovery in this group,
too, could shed further light on what the concept means
and whether it is a useful concept.
Conclusion
Expectation of recovery from schizophrenia is a concept
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