Mental Health Consumers/Survivors Talk About
Stigma In Their Lives
Education for Community Initiatives
187 High Street, Suite 303
Holyoke, MA 01040
quite apparent that this work could not have been done without
the frank and thoughtful perspectives of the forty-six people
interviewed. Not so apparent are the contributions of many other
people who have shared their experiences within the mental
health system for years prior to this inquiry. Their stories
prompted me to take on this project.
thanks to Jackie Parrish, who believes in the importance of this
work. Thanks also for the critique and support of other advisory
committee members and participants - especially Sue Estroff and
Ron Thompson who each, in their own ways, pushed me to put more
of myself into this work.
Bureau spent countless hours in libraries across the country,
identifying both obscure and not-so-obscure works on stigma. In
addition, both Bob and David Specht collaborated with me on the
initial conceptualization of the project.
am painfully aware of the shortcomings of this inquiry I only
hope it will stimulate others to add their contributions.
people were interviewed to determine their views on the topic of
stigmatizing aspects of mental health programs. Of the
forty-six, thirty-four identified themselves as current or
former consumers/survivors. Some of these individuals were also
mental health practitioners or professional advocates. Ten
participants were family members or professionals who did not
identify themselves as consumers/survivors.
described a number of sources of stigma. Major sources included
family, friends and intimates, the job market and co-workers,
neighbors, people at church and in school. They also described
the practices of the housing market, insurance companies and the
social security system as being stigmatizing.
respondents cited a variety of sources of stigma, most
frequently mentioned were the attitudes and practices of the
mental health system and its workforce. Following are attitudes,
beliefs and practices within the mental health system thought to
relating to power and control were most often mentioned. These
included the practice of forced treatment as well as threats of
forced treatment or of no treatment. People also cited lack of
involvement in treatment planning or other aspects of
decision-making about their lives. In addition, restrictions on
the freedom to come and go; being "placed" in a house or
apartment, and other examples were given.
experience of having lower status than staff within the mental
health system was commonly mentioned. Many examples were given,
including cues within the physical environment such as separate
staff-client bathrooms and eating areas, demeaning and
infantilizing interactions between staff and
consumers/survivors, differences in status embedded in program
policies, and discriminatory treatment in employment of people
with psychiatric disabilities as mental health workers.
Regimented and deindividualizing practices of both institutional
and community programs were described as stigmatizing.
Specifically, respondents mentioned dehumanizing admitting
procedures, regimented activities, having to wait for
appointments, and being forced to accept the psychiatric label.
of respondents described the practice of separating people with
psychiatric disabilities from ordinary community life as
stigmatizing. Several people also commented on the practice of
grouping people with similar labels.
absence of challenge or orientation to growth within the mental
health system was also commonly described as stigmatizing.
of respect for privacy was seen by a number of respondents as
stigmatizing. Combined with the experience of always being
observed by staff was the sense that one's behavior was "overinterpreted"
- in other words, that any normal feelings or behavior were
interpreted as pathology or symptoms of one's illness.
respondents indicated that they felt inadequate access to
information was stigmatizing both to people with psychiatric
disabilities and their families.
stigmatizing attitudes, beliefs and practices included: Lack of
attention to potentially stigmatizing personal characteristics
such as effects of medication and personal appearance;
stigmatizing language; "second hand services"; and cues in the
physical environment from the asylum era such as locked
cabinets, bars on windows, etc.
Respondents then described the effects of these stigmatizing
attitudes, beliefs and practices. Their comments focused
especially upon "internalized stigma" and its consequent effects
on behavior and self-esteem: low motivation, anger, depression,
heightened sense of vulnerability, social isolation, and
stifling of growth and productivity.
Participants had many suggestions about responding to
experiences of stigma. Some of the suggestions focused on
strategies which might be employed by the stigmatized d person
him or herself, while others identified responses for staff and
others to pursue. Interestingly, while a number of the
participants identified stigma as a systemic issue, very few
responses were offered at that level. Most focused on individual
and personal responses, either initiated by the stigmatized
person or by mental health workers. Suggestions for the person
him/herself included: staying away from the system entirely,
self-help and peer support, taking responsibility for oneself
through attitude adjustment and behavioral strategies, hiding
one's history and not hiding one's history.
responses which staff and others could initiate included
understanding the dynamics of stigma, building rapport with
people served, cultivating a sense of mutuality, accentuating
the positive, offering chances to exercise responsibility,
affording more choices and more control, and creating natural
inquiry concluded with suggestions for further work, including
additional research on each of the areas addressed, as well as a
variety of educational and service delivery vehicles to reduce
the stigmatizing aspects of mental health programs. The
establishment of a Center for the Study of Stigma was proposed.
This center could be a valuable focal point for research,
education, and promotion of effective program practices. Such a
center would be consumer/survivor governed, although it could
involve collaboration with supportive researchers, educators and
advocates without direct experience as service recipients.
Health Consumers/Survivors Talk About
Erving Goffman published his landmark volume Stigma: Notes on
the Management of Spoiled Identity. In it, he explored the
phenomena of stigma, which he defined as, "...an attribute that
is deeply discrediting..." (p.3). Such attributes included
physical deformities, "blemishes of individual character," or
"tribal stigma of race, nation, and religion" (p.4). Goffman was
especially interested in the effects of stigma on interactions
between stigmatized persons and those he termed "normals." The
consequence of possessing a stigmatizing attribute, he wrote,
was that "...an individual who might have been received easily
in ordinary social intercourse possesses a trait that can
obtrude itself upon attention and turn those of us whom he meets
away from him, breaking the claim that his other attributes have
on us" (p.5). In other words, persons with stigmatizing
characteristics might be denied acceptance, respect and regard
from others whom they encountered.
that time, in the field of mental health alone, numerous books,
articles, and research projects have continued the exploration
of stigma. Scholars in a number of disciplines - sociology,
psychology, history, anthropology - have contributed to an
understanding of the causes and effects of stigma. For example,
Link and others 1982, 1983, 1986, 1987a, 1987b, 1989,1991) have
done considerable research in the area of public attitudes and
the effects of labeling. Wahl (1976, 1982, 1987, 1989) has also
focused on public attitudes and, in particular, on the impact of
television on public attitudes. Fabrega (1990, 1991) has done
extensive reviews of the literature on psychiatric stigma from
the classical to the modern period in western societies. Deegan
(1992) has written on the environmental barriers confronting
people with psychiatric disabilities - stigma being one of those
- and on the impact of such barriers on people's lives. Herman
(1985) followed 285 former psychiatric patients living in
Canadian society in order to understand how they made sense of
their experiences with stigma and what coping strategies they
Sociologists, psychologists and other scholars have also
examined stigma from a cross-disciplinary perspective and have
added to the body of knowledge on this complex topic. Recent
developments along these lines will be summarized in the next
addition to the research and theoretical work on stigma,
consumer/ survivor, family, and professional advocates have
mounted campaigns to "stamp out stigma." Task forces, public
forums and conferences have been convened on the topic of
the many efforts to explore this phenomenon, conversations with
consumers/survivors within the mental health field indicate that
certain aspects of the topic have not been sufficiently
addressed. Stories from stigmatized persons tell of painful
experiences of being excluded, rejected and discriminated
against, often through hundreds of subtle day-to-day
interactions and experiences. Further, people's experiences
indicate that many stigmatizing occurrences are related to
attitudes and practices occurring within the mental health
system itself. While people talk about being stigmatized by
family, neighbors, friends, employers, and others, many of their
stories point to the mental health service system as a primary
source of stigma. Yet little appears in the literature on this
topic and virtually no work is being done in the field regarding
the subjective experience of stigma and stigmatizing practices
in mental health services.
paper is an attempt to generate thought and discussion on the
topic of stigmatizing aspects of mental health programs, largely
from the perspective of current and former service users. Its
purposes are twofold:
stimulate discussion on the issue.
produce a document which identifies current thinking on the
topic and outlines issues for further investigation and action.
It is not
intended as a definitive work. Instead, it is a thematic
inquiry, an exploration into a topic which has received
insufficient scrutiny and yet which often dramatically affects
the lives of people involved. It is unabashedly written from the
point of view of people who have received or been associated
with mental health services. Consequently, the views presented
may not seem "objective," if that is defined as without a point
of view. In fact, the themes which emerged definitely present a
point of view which, at times, may be challenging to absorb.
They do not necessarily represent a dispassionate, balanced
perspective. But they do represent the experience of a variety
of people who, by virtue of their experience, have developed
strong views on stigma and on the role of the mental health
system and other social services in creating and perpetuating
Undoubtedly, there are many consumers/survivors who, if asked,
would say they are entirely pleased with the services they
receive. Some of the people interviewed did have very positive
service experiences to relate. But the same people who felt they
had benefitted from services also commented on the ways in which
those services contributed to their feelings of stigma.
people were interviewed. Most interviews were conducted over the
telephone and lasted from thirty minutes to one hour. There were
several group interviews and one conference call. Participants
were selected from lists forwarded by people on the advisory
included people from all over the United States. No systematic
attempt was made to secure a representative sample, although
there was an effort to target varied geographic areas, people
from varied racial and ethnic backgrounds, people who were
current as well as former service users, and people with a mix
of political/ideological orientations.
forty-six people interviewed, thirty-four identified themselves
as current or former consumers/survivors. Some of these
individuals were also mental health practitioners or
professional advocates. Ten participants were family members or
professionals who did not identify themselves as
consumers/survivors. This second group was interviewed in order
to gain additional perspectives on the topic. All interviews
with consumers/survivors were completed before interviewing the
remaining participants. The themes generated by the first group
were used to stimulate discussion with the second group.
interviews were open-ended. A small number of probe questions
were used to generate responses2.
All participants were very willing to be interviewed.
Conversations, as indicated, were quite lengthy. Some
participants even called a second time or sent articles,
letters, and cassette tapes. A number of people noted that no
one had ever asked them about stigma. While some respondents
initially found it difficult to articulate their thoughts, once
they started talking about their experiences it was sometimes
difficult to end the conversation. The interviews generated a
great deal of material, only some of which will be included in
possible, direct quotes are used. Many respondents were willing
to have their names used, while others preferred anonymity. For
ease of reading, only personal descriptions relevant to
respondents' comments will be provided.
remainder of this report will address the following topics:
First, a brief discussion of the dynamics of stigmatization will
establish a theoretical framework for the findings of the
inquiry. Next, respondents' comments on the sources of stigma in
their lives will be described. Then, the attitudes, beliefs, and
practices people found to be stigmatizing within mental health
services will be discussed at length. Participants' views on the
effects of stigma will then be described, followed by responses
to stigma that people have found helpful. The report will
conclude with recommendations for further work on this topic.
efforts to synthesize the dynamics of stigmatization suggest
that it is a set of responses to what Coleman (1986) terms "the
dilemma of difference." This dilemma can be stated as follows:
It is a fact that all human beings differ from one another in a
multitude of ways. Age, gender, skin color, intellectual and
social characteristics are but a few of these differences.
Although it is a fact of human existence that no two people are
exactly alike, certain of these characteristics or attributes
become defined as undesired differences or stigmas
(Goffman, 1963). Which differences become defined as undesired
are, to a certain extent arbitrary. In other words, virtually
any difference is potentially a stigma. The particular
differences which become defined as undesired are highly
dependent upon the social context. Coleman (1986) and others3
assert that stigmas reflect the value judgments of a dominant
group, i.e., those possessing power within a given culture. In
North America, such values reflect an emphasis on wealth,
material prosperity, health and physical beauty, youth,
competence, independence, productivity, and achievement
(Wolfensberger, 1991). People not seen as reflecting such values
are consequently stigmatized.
and Crosby (1986) write, "It is shared negative evaluations of
human differences that are central to stigma. Individually held
biases do not carry the weight of socially designated (hence
shared) negative evaluations...societal devaluations are
powerful because they cannot be dismissed as the ravings of some
idiosyncratic bigot. Instead, they form part of a socially
shared sense of 'reality.' This characteristic of devaluation is
essential for one's very humanness to be questioned (by
stigmatizer and stigmatized alike), and as such, these
devaluations can be passed on to succeeding generations and
woven into the institutional fabric of society" (p. 31).
(1986) suggests three main causes of stigmatization:
is the primary affective cause of stigmatization. For a variety
of reasons, human beings tend to fear differences, fear the
future, and fear the unknown. Consequently, they stigmatize that
which is different and unknown.
is the primary cognitive process contributing to stigmatization,
a result of the human tendency to categorize. Coleman writes,
"Stigma appears to be a special and insidious kind of social
categorization...People are treated categorically rather than
individually, and in the process are devalued. In addition,
...coding people in terms of categories instead of specific
attributes allow people to feel that stigmatized persons are
fundamentally different and establishes greater psychological
and social distance" (p. 219).
is the behavioral impetus for stigmatization. The social control
aspect of the stigmatization process serves to preserve the
existing social hierarchy - maintaining stigmatized groups in an
inferior social status.
of these - fear, stereotyping. and social control - may be
manifested at the individual and interpersonal levels as well as
embedded within our societal structures and institutions.
then offers an updated definition of stigma:
clarify the definition of stigma, one must differentiate between
an 'undesired differentness' that is likely to lead to
feelings of stigmatization (emphasis added) and actual forms
of stigmatization. It appears that stigmatization occurs only
when the social control component is imposed, or when the
undesired differentness leads to some restriction in physical
and social mobility and access to opportunities that allow an
individual to develop his or her potential. This definition
combines the original meaning of stigma with more contemporary
connotations and uses" (Coleman, 1986, p.228).
a dynamic process, not a fixed set of attributes. Scott & Miller
(1986) talk about stigmas as "emergent social constructs
(which)...require us to investigate how they came to be, what
sustains them, and how they may change." Wolfensherger and
Thomas (1983), in discussing how stigma is conveyed within a
society, assert that it is through the often unconscious process
of image association, one of the most effective learning and
behavioral control mechanisms known. They state that the symbols
and images historically associated with devalued persons are
strongly negative and convey messages of illness and death,
criminality, worthlessness, incapacity, and others. While these
image associations are often made unconsciously, they
"nevertheless strongly influence people's role expectancies and
the social valuation of the persons so imaged" (p. 27). They
describe four service elements ("media") through which images
may be conveyed: the physical setting in which a person is
associated; groupings with other people and programs; activities
of a program; and language, labels and miscellaneous other
symbols (e.g., funding sources, laws and regulations, etc.).
Further in this paper, the section on "Assumptions, Beliefs, and
Practices People Found to be Stigmatizing" will explore some of
the negative images participants felt were communicated about
them through the various media described above.
the participants in this inquiry view the stigmatization
process? As with many complex problems, there was a tendency to
emphasize one aspect of the process over others, with
perspectives varying greatly. Several people believed that
stigma was an "inside out" process. Joel Slack said, "...the
seed is within ourselves. It takes other insensitive people to
validate the stigma." Bill Butler said, "stigma is an inside out
thing, not outside in." Others equated stigma with
discrimination, and felt that stigma originated in the larger
culture. Ron Thompson said, "I don't use the word stigma. I use
discrimination. It's exactly the same thing women and blacks
face." Judi Chamberlin shared that view. She said. "Even the
word 'stigma' is a bad word. The concept of stigma, itself,
implies that there's something wrong and we have to hide. We
need to talk about discrimination and prejudice. It's a civil
rights protection problem." Another participant said. "Stigma
can be defined as oppression."
majority of participants who commented on this saw a dual aspect
to stigma - both internal and external. They felt there was an
interaction between what many people termed "internalized
stigma" and external conditions of life affecting one's self
Participants' views on the effects of stigma will be described
in detail further in the paper. Coleman (1986) identified three
major effects: social rejection or isolation, lowered
expectations, and "internalized stigma."
rejection takes many forms. Systematic social rejection can lead
to segregation of people who have been stigmatized. Often this
rejection is accompanied by congregation, where people with
similar negatively valued qualities are grouped together, as in
institutions. Rejection can also be more subtle and
interpersonal, such as when people are ignored or treated as if
they are not present in social situations, are not consulted
about decisions that affect their lives, are excluded from
gatherings, and other forms of rejection.
expectations can result from the stereotyping of stigmatized
persons. If a person is seen simply in terms of their undesired
difference, or stigma, then they are unlikely to have high
expectations held about them. Lowered expectations may prevent
stigmatized persons from having opportunities to grow and
develop. They may also create and reinforce the low self-esteem
that is the hallmark of internalized stigma.
Internalized stigma, as the term implies, refers to the process
of absorbing into oneself negative societal beliefs and
expectations held about people who are stigmatized. Many people
who have been stigmatized consider this the most damaging
effect, because it becomes independent of external perceptions,
and can consequently follow one through life, regardless of the
external evidence of success or achievement.
be seen later in the paper, respondents tended to focus on
"internalized stigma" as the main effect of stigma. They
described feelings and beliefs they held about themselves which
then affected their behavior. The impact of lowered expectations
and social isolation - especially as initiated by those within
the mental health system - can be noted more strongly in the
section on stigmatizing practices.
section will describe what participants believed to be the
sources of stigma
who were interviewed described a number of sources of stigma.
Family, friends and intimates were mentioned a number of times.
The job market and coworkers were two other often-mentioned
sources of stigma. Stigma was considered to be especially strong
when respondents attempted to secure positions within mental
health programs themselves.
people told stories of being stigmatized by neighbors, people at
church, and in school. Stigma and discrimination in housing was
mentioned as well. Several people mentioned the practices of
insurance companies, which they believed were discriminatory.
Having to accept the label of mental illness in order to access
social security benefits was described by two respondents as
Additional sources of stigma reported by respondents included:
groups of patients who set up a sub-culture, the vocational
rehabilitation system, few alternatives for poor people other
than acceptance of services, enforced poverty, media and
advertising agencies, and generalized societal attitudes which
are internalized by people with psychiatric disabilities.
respondents cited a variety of sources of stigma, most
frequently mentioned were the attitudes and practices of the
mental health system and its workforce. The following quotes may
illustrate the strength of people's response:
who stigmatize most are those in the mental health system.
They've shown very little interest in the opinions of former
patients regarding the treatment they've received" (Larry
whole system is set up (not consciously) ... to create and
preserve stigma" (Janet Foner).
been involved in the academic world as a professor. They were
very nonstigmatizing, they didn't care at all about my mental
health background. I have found great stigma in the mental
health system" (Anonymous).
this concept in my mind: it's called recovery from treatment.
Treatment is the mcst stigmatizing thing there is" (Anonymous).
greater involvement in the system, the greater the stigma" (Bill
in mental health services? It just goes on and on" (Judi
Respondents who believed that mental health services contributed
to stigmatization had many specific examples to relate. These
will be described in the next sections.
Beliefs and Practices People Found to be Stigmatizing
dynamics of stigmatization described earlier are manifested in
social institutions, including the law, the educational system,
social services, etc. No aspects of society are completely free
of the three components of stigma: fear, stereotyping, and
social control. They are at least as likely to be active within
mental health systems and programs as they are in the larger
society. While some of these dynamics are conscious and
explicit, many others are unconscious and implicit - whether
they play out at the interpersonal, organizational, or systemic
level. This section will address the practices of mental health
professionals, programs, and systems reported by participants to
be stigmatizing. Where possible, underlying beliefs or
assumptions driving such practices will be explored.
Hold the Keys:" Power Issues
relating to power and control were most often mentioned as being
stigmatizing. Respondents observed that such dynamics permeated
the practices of the mental health system. Ron Thompson, whose
critique of this paper appears in Appendix C, considered forced
treatment to be the practice which "alone guarantees the
existence and perpetuation of 'stigma'" (Personal communication,
January 10, 1993). He said, "Anybody who advocates power over
others - forced treatment - is for stigma and discrimination."
from other respondents reflected this analysis. A number of
people indicated that the practice of "forced" anything -
medication, treatment, hospitalization, activities - was
particularly stigmatizing. One person said, "When there's no
coercion, there's no stigma."
addition to overt coercion, some people mentioned threats - of
forced treatment, or no treatment - as a strategy to keep people
in line. For example, one respondent, who was a voluntary
inpatient in a psychiatric hospital, was told that involuntary
procedures would be instituted if she left the hospital. Another
"I went to
an outpatient psych ward with a prescription written for 'sleep
therapy.' The doctor told me that I would just 'sleep for
awhile.' This was my 'informed consent' for what years later I
learned was electroshock therapy! We were sitting in the hall
waiting our turn. Every so often people would be helped out. I
saw this man who had a grimace on his face like he was in pain.
I walked in, got up on a table. They gave me an injection. I
stopped breathing. Then he gave me sodium pentothal and I woke
up in another room. I felt like I'd been run over by a truck. I
had no energy. I don't know why, but I went back three times.
Finally I decided to go talk to the doctor. I went to his office
and told the receptionist I can't stand these 'treatments'
anymore. Then I heard the doctor's voice from behind the door:
'Tell him if he doesn't do what I say, go somewhere else'"
several times were issues relating to the "ownership" of a
person's treatment plan. One person said, "They set a series of
goals that the program devises for other people. If the person
doesn't like the goals, or if they have goals of their own,
they're called 'non-compliant,' or 'rebellious,' or
'unresponsive to treatment.'" Anthony Lehman a psychiatrist
said, "A care plan that a consumer is 'involved in' is often not
collaborative. A person may be presented with the plan, or a
brief discussion. If the person doesn't agree, it reverts to a
power struggle." Ken Terkelsen, also a psychiatrist, said,
"There is an understanding that clients own their plans. But
staff feel a responsibility to object or debate aspects of some
plans." He commented that, in his view, the tensions surrounding
issues of authority and responsibility are ongoing and
legitimate (See Appendix D for further comments on this topic).
people described the following practices of programs related to
power and control as stigmatizing:
restrictions on freedom to come and go;
told when to do things;
choice about life decisions;
placed in a house or apartment;
speaking for people served;
one's preference, insights, self-knowledge and perspectives
Butler summed it up by saying, "You're not given a choice,
you're given a sentence. You're placed in a house, you're placed
in an apartment. If you don't have choices that are regular
community choices, that is stigmatizing."
issues of power and control pervade the mental health system? As
mentioned earlier in the paper, the stigmatization process is
dependent upon the negative evaluations of representatives of a
dominant group, i.e.. those possessing power within a given
culture. Once such negative evaluations are made,
representatives of the dominant society are then given license
(whether formally or tacitly) to exercise social control over
those who fall within stigmatized groups. In mental health
services, staff play the part of "controllers" via the myriad of
policies, practices, laws, and relationships characterizing the
mental health system. This dynamic is further complicated by the
expectation that staff be responsible for protecting and
nurturing the people whom they serve. As one professional
commented, he feels a tension between the "therapeutic agenda
and the custodial mandate" that is part of the mental health
is one category of experiences which captures the essence of the
stigmatization process, it is the fact that people with
psychiatric disabilities are perceived and treated as having
lower status than staff within the mental health system. Coleman
(1986), in discussing the meaning of stigma for social
relations, writes, "I have intimated that 'stigmatized' and
'non-stigmatized' people are tied together in a perpetual
inferior/superior relationship. This relationship is key to
understanding the meaning of stigma" (p. 221).
were many examples of this differential described by
respondents. Some were found as symbols or images within the
physical environment. For example, one respondent said, "You're
shit and I'm not. Why? Because I've got the keys." Other people
commented on the presence of separate and more attractive
accommodations, such as staff bathrooms and dining rooms, as
symbolic of the difference in status.
examples of the status difference having to do with
interpersonal interactions between staff and consumers/survivors
were given. For example, Carmen Meek said. "They feel themselves
more well, more together and so they have some right to tell you
how to live your life." David Hanlin told the following story:
"I think it (stigma) is worse within the delivery system than it
is in the public. For example, a friend went to a five-day
seminar on mental health issues. Three people stayed in a hotel
room: my friend, a therapist, and a social worker. When they
found out she was a consumer, they had her reassigned. They
said, 'We're here to learn about mental illness, to get away. We
don't want to be burdened down'" - not only implying that she
would be a burden, but also that they, the professionals, were
in a position to care for her, even though they had no official
role or responsibility in that regard.
Vath, a parent said, "...the manner in which many professionals
speak to (people with) mental illness: the look on the face, the
downcast eyes. Even the commissioners. I see this among the
professionals: When they're talking to someone with mental
illness they speak very loud."
Respondents also gave examples of the status differential as it
played out in therapeutic interactions. Interactions in which
staff treated consumers as children were cited, as were the use
of techniques one might employ with children.
differences embedded in program policies and procedures were
also described. For example, Stephen Holochuck described an
experience where he phoned a mental health center to request a
copy of their brochure. The receptionist asked, "Have you
received services here?" He responded, "I don't care to answer.
Why do you need to know?" The answer was, "Because if you're a
professional, we'll mail it to you. If you're a consumer, you
have to come in and pick it up."
was also cited, on both an individual and an organizational
level. Some people mentioned the experience of having their
input solicited and then not used. For instance, Janice Herring
was part of a committee that was to set up a monitoring system
for group homes in her state. She participated in the meeting,
gave ideas which the committee agreed to. However, in the
report, her ideas had been eliminated.
Goodman, director of a state-wide consumer organization, talked
about her experience with organizational tokenism. She said,
"Even dealing with other advocacy organizations ... they don't
bring consumer organizations into the loop at the same level."
of people mentioned the status differential between people with
psychiatric disabilities who were hired to work in mental health
programs and other workers. Again, this was reflected in
personal interactions, as well as embedded within program
policies and practice.
people talked about the difficulties they experienced during the
hiring process itself. For example, Janice Herring said, "The
mental health programs I applied to all turned me down. (One
place) said there wouldn't be any jobs for three months and they
are now interviewing a friend of mine. They ask lots about your
mental health history, whereas the business community only
wanted to know how you could do the job."
Mellen, a mental health professional, told the story of
receiving a phone call from a mental health center about an
applicant for a paraprofessional position. The prospective
employer asked her a number of questions about the woman's
clinical condition. Another participant said that a year after
she had been hospitalized, she was looking for a professional
position in the mental health field. One person on the board of
directors of an agency where she was being considered knew her
and her therapist. He called the therapist to ask if she could
handle the job.
Stoneking, a professional who was involved in developing a
program to employ consumers in a county case management system,
shared a number of stories about the stigma experienced by
consumers once they were hired to work in the mental health
system. For example, when the program was getting started,
existing case managers objected strongly to hiring consumers.
One of the reasons was, "When are we going to have a release?"
In other words, when could professional staff talk about people
with psychiatric disabilities without having to be careful of
what they said?
program got off the ground, there continued to be circumstances
in which the consumer case managers (called service
coordinators) were treated differently than professional case
managers: There were questions about confidentiality ("Should
service coordinators have access to all records or only to
'their cases'?" "Should they be allowed to sit through entire
case conferences or just the portion concerning 'their
cases'?"). Service coordinators were also not given their own
were questions about disclosure. Case managers felt it was
unprofessional, countertransference, a violation of boundaries -
for service coordinators to disclose their experiences as
differences in treatment: The agency risk manager would not
allow the service coordinators to drive county cars, even though
other volunteers were allowed to. In addition, supervisors met
with case managers and service coordinators separately.
Stoneking also described the following response to hiring
consumers/ survivors: "One program (which employs consumers as
case managers) used to have one open room with all case
managers. Now the service coordinators - clients - are crammed
into one open area and the case managers have their own cubicles
... Case managers really had to make sure everyone knew they
were the professionals and the service coordinators were the
clients. They introduce people as their assistant, and a
this program had numerous examples of status differences between
case managers and service coordinators, other respondents also
described the stigma they experienced as consumer case managers.
Pat Risser, who worked as a consumer case management aide, said,
"I was trained as a professional, I worked as a professional,
but I was always one rung below on the ladder. We're held to
higher standards." He also said, "We had a hard time
transitioning into the role as a professional because we were
excluded from the social activities of the 'normal' staff. We
were not treated as social equals. They would go out on Friday
nights. When we were finally invited to join the others at their
weekly TGIF outings, the barrier of stigma from our co-workers
finally broke down, we did socialize when given the opportunity
and proved ourselves to be equally, fully, human. There still
remained huge differences in salary and economic status. There
remains a long way to go to achieve 'equal pay for equal work.'
down the social barrier was certainly a step in the right
Goodman gave her perspective on consumer case managers: "They
serve as go-fers, do menial work. They aren't part of the
treatment team or carrying out peer counseling." Another
respondent said, "I'm very concerned that there's a whole
movement afoot to hire consumers. They're getting paid half of
what other people make. They're neither fish nor fowl."
effect of stereotypic thinking on the behavior of mental health
professionals is strikingly illustrated in the following
vignette, shared by David Hanlin: "I went to work as a mental
health technician in a psych hospital ... I told a nurse about
my past psychiatric problems; a trusted co-worker. Next thing I
knew, she'd spread this to co-workers. Once they knew, it was
amazing the difference in how other staff reacted. They started
using patient words on me. Everything I did was
there such clear examples of discriminatory treatment of
consumers who are hired to work within the mental health system?
Because the status differential between staff and consumers is
deeply embedded within the mental health system as a whole.
Until the underlying beliefs and attitudes about people with
psychiatric disabilities are addressed within the system as a
whole, the employment of consumers/survivors will not be free of
such discrimination. Janet Foner summed up the strength of these
ingrained beliefs when she said, "From staff, I got opinions
that you could never cross that line from patient to staff ...
They can't believe I'm the same as them ... people are made to
be pariahs even though they're actually no different than anyone
Regimentation and Deindividualization
attitudes, beliefs, and practices appear to merely contribute to
the stigma that already exists. However, other practices not
only perpetuate stigma, but they actively serve to strip a
person of their non-stigmatized identity and replace it with the
stigmatized identity of a "mental patient." Regimented and
deindividualizing practices of both institutional and community
programs are examples. Herman (1985) cites her own and other
research4 on the
chief originator of stigma - the institutional processing that
is a dominant feature of mental hospitalization. Specifically,
these include being brought to a hospital against one's will in
an ambulance, being treated like an inanimate object, being
subjected to an embarrassing physical examination, having one's
possessions taken away, staff enforcement of rules and
regulations, having intimate information about one's life
gathered in the form of case histories (which are then available
to all staff), and having enforced interactions with other
patients. These processes "...serve to strip the individuals of
their prior non-deviant self-conceptions. In its place, the
institution offers such persons an alternative conception of
self as 'mental patient' - a deviant identity and status which
the persons gradually begin to accept" ( Herman, 1985, p. 171).
Respondents in this study gave examples of their experience of
regimentation and deindividualization within programs, both
institution and community. Specifically, they cited the
Dehumanizing admitting procedures - "During my first
hospitalization ... the first time I was medicated it
was very mortifying. They said I could take it by mouth
or injection. I refused, they grabbed me and held me
down and injected ... Then they took my clothes away. I
do not minimize the impact of taking my clothes away. I
never got them back. I still remember those - a yellow
shirt with green stripes and green pants ... During the
first month they didn't allow family, friends and my
outpatient psychiatrist ... they cut my hair." (Dan
Regimented activities - One respondent described a
community day treatment program in which he participated
where consumers were not allowed to use the bathroom
during the entire hour of "group." Other respondents
described haying to take part in activities (arts and
crafts, group therapy) whether they wanted to or not, at
Having to wait for appointments - Anthony Lehman noted
that basic routines of clinics don't support self
esteem. He commented specifically on the practice of
making people wait for appointments or scheduling
appointments during the day as if people had nothing
better to do. While one interpretation of this phenomena
might be that highly valued professionals routinely
overbook their appointments, it has a more insidious
function of reinforcing messages about consumers that
are a consistent theme throughout the entire system -
messages that people are not important, are certainly
less important than staff, and that their lives are
Being forced to accept the psychiatric label - "When you
go into a psych setting, they get you to admit you're
mentally ill and if you don't, they say it's a symptom
of your illness. They make you helpless, they break you
down. If you're strong and fight back, they'll crush you
with drugs and shock treatment and cause further brain
damage" (Anonymous). Another respondent wrote, "...it is
clear to me that stigmatization is the function of a
mental illness diagnosis. There is no way you can claim
'mental illness' without all its legally stigmatizing
Separating People from Ordinary Community Life
of respondents described the practice of separating people with
psychiatric disabilities from ordinary community life as
stigmatizing. Several people also commented on the practice of
congregating or grouping people with similar labels. Carmen Meek
described an event that she experienced as very stigmatizing
when she was in a group living situation: "One day we were
loaded in the van, they packed lunch for us, and carted us off
to a movie. The social worker bought tickets for our group,
handed them to the ticket taker and we all trailed in like some
group of mental patients."
person, critiquing the practices of mental health centers with
which he was familiar, said. "Mental health centers group
people, isolate them, and set up an artificial
pseudo-environment. They do things outside society, actively set
up a segregated society. It is harder for people to improve
their quality of life if they can't make it in the society where
the rewards come from. Mental health centers reinforce the
tendency for people to drop out, stay out, to disengage ... The
system turns people into monsters. Mental health centers are
zoos in the community where mental monsters hang out all day."
Butler referred to segregated housing as the "housing with meals
mentality," and said, "segregated housing is the killer."
practice of segregating and congregating people with psychiatric
disabilities exemplifies one of the major effects of stigma
described earlier - social rejection. In addition, it
contributes to another of the major effects, lowered
expectations. As the respondent above commented, segregation
reinforces the tendency for people to disengage from ordinary
life, thereby depriving them of opportunities to develop the
skills and the confidence to function within a non-segregated
environment. As a result, they become viewed as people with no
future and little to offer.
is segregation a consequence of stigma, but it also contributes
to stigma by reinforcing several stereotypes about people with
psychiatric disabilities. These include the belief that people
with psychiatric disabilities are fundamentally different than
other people, that they "belong with their own kind," that they
need to be protected from society, or that society needs to be
protected from them.
absence of challenge or orientation to growth within the mental
health system was also commonly described as stigmatizing.
Respondents commented on this feature in the system at large, as
well as within programs and individual staff interactions. One
respondent said, "There has been, for most of my experience with
private and public psychiatry, no rehabilitative approach. I was
expected to amount to no more than a clerk even though I have a
Ph.D." Several people commented on the underlying beliefs about
people with psychiatric disabilities which they felt contributed
to a non-developmental approach. For example, Janet Foner felt
that the belief in mental illness as a permanent, chronic, and
deteriorating condition was a major factor: "The idea that a
'deep emotional upset' can never be recovered from - that it's
an illness that can't be recovered from - means that people are
kept separate, they can never function, will always be in
paired. That's the key that keeps the whole thing going ... The
concept of mental illness as a permanent, chronic condition is
Meek said, "The system reminds you of what you can't do; how
disabled you are, how ill you are. It doesn't focus on wellness,
capability, potential of people."
describing practices of particular programs, people often
referred to their experiences in psychiatric hospitals and day
or vocational programs. Several people mentioned the types of
activities they found stigmatizing: arts and crafts, children's
games, and practice with activities of daily living instead of
developing work and social skills. For example, one person said,
"The activities in mental health centers were no more than baby
sitting - arts and crafts, ADL skills. They were not empowering;
a waste of time. They should have vocational services during the
day and building socialization skills for after hours."
Risser, who referred to rehabilitation programs which placed
people in menial jobs as "food or filth," said, "People are
plugged into one or a few slots. They don't really train people
to do what they want to do, or find what their potential is." He
went on to say, "I went through a severe depression, was in a
lot of pain. I said I wanted to do something with my life.
Instead of sending me to school as a paralegal, they sent me to
a sheltered workshop. I was standing next to someone who was
severely retarded and we were counting fish hooks. I was class
president in college, I was a law school drop out. If I wasn't
depressed going in, that sure did it. I thought, 'God, have I
sunk that low? Is this what everybody thinks?'"
of family members had the same reaction. Louis Vescio said,
"Drop in centers are ill thought out. Drinking coffee and
smoking cigarettes is not a program." Leo and Rae Stack, whose
daughter had derived great satisfaction from her "regular job,
not a put-up job" noted that some of the so-called work
opportunities they had heard about were detrimental to the
people because of the demeaning limitations placed upon people.
Katie Vath, who served on the board of a psycho-social
rehabilitation agency with an excellent reputation, said,
"...the attitude of these people is that about the only thing
the mentally ill can do is scrub floors, empty trash cans and
dust desks." These non-developmentally oriented programs
reflected the perception that service users had little
respondents described interactions with staff that reinforced
low expectations and the view of people as having limited
potential. One person said, "One case manager spent most of our
time together convincing me that I should accept my devalued
status and that I should accept part-time janitorial work as a
future ... accept my disabled and unabledness." This same person
is now working full-time in mental health administration at a
results of this non-developmental approach? "Massive dependency"
(Carmen Meek). "Low self-esteem, low self-confidence"
(Anonymous), and finally, no hope: "The system tends to foster
no growth. This no fault thing encourages no growth: 'This is
the way you are, nothing can change,' 'incurable,' 'lifetime,'
'once you've got it, you're stuck'" (Anonymous).
in a Fishbowl"
of respect for a person's privacy was seen by a number of
respondents as stigmatizing. In fact, more than once, people
referred to this experience as "life in a fishbowl." This sense
of always being observed was commented upon by several different
people. Joel Stanley said. "All the agencies I've ever had to
see, they must talk. They look at me strange and move away."
Paul Ottenstein said, "People are always observing your
behavior. You have to be careful about what you do..." A third
person said, "Going in and telling a perfect stranger the most
intimate experiences of your life - opening up your private self
and then just getting battered - it's very destructive."
with the experience of always being observed by staff was the
sense that one's behavior was "overinterpreted" - in other
words, that any normal feelings or behavior were interpreted as
pathology or symptoms of one's illness. As Larry Plumlee, a
professional said, "The stigma I hear the most is because you
are a former mental patient, any emotional expression or
statement you make is interpreted as a manifestation of
illness." Pam Goodman, director of a state-wide advocacy
organization, said, "Once I took this job, I experienced a lot
of stigma. It was a token organization, barely funded. I started
attending meetings. I was discounted, condescended to, treated
as a consumer. People talked down to me. I served on a committee
which had to do with evaluation and measurement. I have a Ph.D.
in that field. I was putting out state-of-the-art ideas but I
must have gotten too enthusiastic. I actually got patted down."
coined the term "over-interpreted behavior," described her
experience during a hospitalization. She related that during her
time in the hospital, she chose to be very quiet ("I didn't
trust them. I wasn't going to tell them life's deepest secrets
because I didn't know how it would be twisted, used against
me.") However, she was much more animated when she made phone
calls to her friends and family. Consequently, in her case
record was written: "Question manipulative affect. Brighter when
people who spoke up for themselves: "Maybe we should increase
someone who was very tired: "Are you sure you're not toxic on
consequence of this was the stifling of ordinary emotions.
Janice Herring said, "'Calm down, calm down': When I get mad my
contributions aren't taken seriously." Carmen Meek in speaking
about her personal relationships, reported, "If you get angry,
irritated, have feelings, there's a question of 'did you take
your pill?' You're not allowed to express your feelings, or to
have normal human reactions."
Plumlee said, "There is much more of a ban on feelings in mental
hospitals. It points to a basic problem in psychiatry: Angry
equals paranoid; showing grief equals depressed. Behaviors that
enable people to heal are labeled as symptoms of disease."
systemic manifestation of having one's behavior over-interpreted
was the practice of having one's life viewed through the "lens
of diagnosis" rather than poverty. Some respondents felt that
the consequences of poverty played a much larger part in
influencing life conditions than did the psychiatric disability.
Yet the struggles and challenges they experienced were treated
as manifestations of their illness rather than poverty.
phenomena, being watched and having one's behavior interpreted
as evidence of pathology, illustrates two components of the
stigmatization process - social control and stereotyping.
experiences "life in a fishbowl?" With the possible exception of
celebrities and royalty, it is usually those people who are
subjugated, or under the control of others, who are closely
watched. The consequent "over-interpreted behavior" exemplifies
the stereotyping process which occurs to stigmatized
individuals: The stigma assumes a "master status" (Goffman,
1963), and all other aspects of the person are either overlooked
or interpreted to confirm that master status.
Inadequate Access to Information
respondents indicated that they felt inadequate access to
information was stigmatizing, both to people with psychiatric
disabilities and their families. Specifically mentioned was
failure to educate consumers regarding their diagnosis or
prognosis as well as what one person described as the "unduly
mystifying process" of therapy.
underlying beliefs about people might these practices reflect?
One possibility is that people with psychiatric disabilities are
not seen as capable of understanding their diagnosis or
prognosis because they are lacking in awareness. Some
respondents commented on the perception that mental illness
causes people to be disconnected from the real world: "Most
resounding is the perception by care givers that an individual
who is really sick is not connected to the real world in any
way. But we can always sense the disrespect and insensitivity
around us" (Joel Slack).
person said, "Just because I'm chewing on a table doesn't mean I
don't know I'm chewing on a table."
possibility is that is people with psychiatric disabilities are
seen as too fragile to cope with the "reality" of their
diagnosis and must be protected from that knowledge.
third possibility is that people are seen as merely objects
which need to be fixed and, as persons, are irrelevant to the
process of treatment. A number of people commented on this
assumption is underlying the whole system: there are
people who need fixing and the fixers. It runs through
the whole system, community and hospital" (Janet Foner).
lot of psychology, especially behavior modification,
objectifies people. Instead of believing people can
learn and grow, it's 'you have to do something to a
person'" (Janet Foner).
"Training is oriented to seeing a patient as an object,
passive. 'Placing people' - moving them around makes
them sound like rocks" (Anthony Lehman).
"You're treated as if you have a physical ailment that a
medical system has total control over: Isolate symptom,
control environment - to treat a condition that has no
scientific proof" (Anonymous).
of Attention to Personal Characteristics Which May be
number of people mentioned aspects of life which, while they
might not be under the direct influence of programs, do
constitute "media" through which stigma is communicated, as
discussed earlier in the paper. As such, these areas need to be
considered and possibly addressed by mental health workers.
instance, one person commented that effects of drugs cause funny
movements which draw undue attention to the person. Another
person wrote, "Treatment with drugs often makes invisible
of people referred to the clothing and behavior of consumers
("For four and a half years I was institutionalized right down
to the clothes I wore. It set me apart.") Although program staff
may not be directly responsible for causing these stigmatizing
aspects of a person's identity, they do have a responsibility to
support individuals who wish to address them. As Joel Slack
said, "...care givers have both the responsibility and the
capacity to remove stigma..." In addition, staff have the
responsibility to offer feedback to people when aspects of their
behavior and/or appearance interfere with achieving other goals
they may have. such as employment, personal relationships, being
accepted in the community, etc.
Language and Labeling
Respondents' comments about language and labeling fell into
Objections to language separating the phenomena of
stigma from the larger dynamics of oppression: Some
respondents were adamant about using words such as
"prejudice," "oppression" or "discrimination" to
describe the phenomena being addressed, rather than
using the word "stigma." As mentioned earlier, Judi
Chamberlin said, "Even the word 'stigma' is a
bad word. The concept of stigma, itself, implies that
there's something wrong and we have to hide. We need to
talk about discrimination and prejudice. It's a civil
rights protection problem."
Objections to offensive slang: Words such as "twisted,"
"nut," "cripple," "moron" were seen as stigmatizing.
Objections to patronizing or condescending language:
Some people commented on the practice of referring to
people as "our" mentally ill or "the" mentally ill.
Other people talked about patronizing tones of voices,
or those which might be used in talking to children.
Objections to euphemistic language: One person said,
"Psycho-babble like 'We're waiting for the therapeutic
effect' bothers me." Another person felt the word
'consumer' was euphemistic: "They changed the language,
but they didn't change the practice. It's a lie. There's
no market research, the products aren't changed."
Objections to language with a medical orientation: Words
such as "patients," "mental illness," "sick," were seen
as stigmatizing by some respondents, along with the
"language regarding symptomology that makes it sound
like people have mold growing out of their ears." as
Anthony Lehman said. "Decompensating" might be a good
Objections to language with the implicit assumption of
the power to judge: Terms such as "treatment resistant,"
"high or low functioning," "non-compliant,"
"rebellious," "unresponsive to treatment," and similar
terms, which tended to pass judgment, were considered
stigmatizing by a number of people.
Objections to dehumanizing language: Very few people
commented specifically on the use of dehumanizing
language. One respondent said he felt the term "placing
people" was stigmatizing people because it was as if the
people were rocks - inanimate objects.
Lefley, a professional and a family member, felt that the way
various terms are perceived should be changed, rather than the
terms themselves: "A big problem with the whole stigma issue is
that everybody has bought in to the stigmatizing properties of
all the terms surrounding mental illness. It's taken us many
years to say, 'I have cancer.' Why can't we do that with mental
illness? Why can't we proudly say, 'I have a mental illness and
I've transcended the barriers'?"
were few non-stigmatizing alternatives offered to the terms
people objected to. Several people proposed that the word
'stigma' being discontinued and that 'discrimination,'
'prejudice,' or 'oppression' take its place. Judi Chamberlin
proposed that language referring to people with psychiatric
disabilities and their roles within the system be considered in
context. She said, "You are a client in a program, a member in a
clubhouse, and a survivor in the political context."
theme was the perception that mental health services were
"secondhand." Some people commented that they had experienced
services as low quality or had received therapy from unqualified
staff. A couple of people commented on the location of programs
in poor neighborhoods or rundown environments. Not only are such
practices evidence of the devalued or stigmatized status of
service users, but they also contribute to the stigma, by
conveying the impression that people with psychiatric
disabilities do not "deserve" quality services, or environments.
The association then made between the people and the
services/environments is that the people themselves are
second hand or second rate.
in Physical Environment from Asylum Era
Terkelsen referred to cues in the physical environment inherited
from the asylum era. These cues included such practices as
locking up knives, padlocking refrigerators or medication
closets, covered radiators, etc. By and large, such cues
represent an overprotective orientation to service - the belief
that people might hurt themselves if they had access to such
in the paper, three main effects of stigma - social
rejection/isolation, lowered expectations, and internalized
stigma - were introduced. In this section, respondents' comments
on the effects of stigma will be explored in more depth. Most
people focused on "internalized stigma" and consequent feelings
often-mentioned effect was lowered self-esteem. For example, Dan
Fisher said, "It took me a long time to regain my self-esteem. I
almost did have to become a psychiatrist to regain my
self-esteem - to prove to myself, to prove to the world, to
overcome the labels. Once they've done that diagnosis, you just
can't get rid of it, from your records and your heart." Leonard
Laird said, "You get nailed down, they label you, you're under
their jurisdiction, you're a dummy ... It made me feel,
helpless, hopeless. Now I don't feel that way, I just said, 'To
hell with them, they can jump in the ocean.' What changed? My
self-esteem, my confidence. I know who I am."
Lehman said, "Stigma erodes self-esteem. Self-esteem that is
very seriously damaged leads to people not trying, trying to
kill themselves, or being destructive with their lives. They
destroy their chances because they're angry and feel so bad.
people mentioned anger as well. Janice Herring said, "I'm angry.
I want to walk away from the consumer movement completely. I
can't continue to fight what appears to be a lost cause."
Another person said, "I talk to myself, often angrily. It makes
you feel like you're a mental patient, you're abnormal."
Depression was another effect of stigma, although one respondent
said, "I've been psychologized so much, it's ridiculous! I'm
helpless, hopeless, lost, frustrated, discouraged, confused -
of respondents described the feeling that they carried a
life-time label that was all-encompassing. One person, who has a
Ph.D. and is teaching university at the graduate level, said,
"It's been only the last two or three years that I stopped
calling myself 'crazy'. Yet my last hospitalization was in 1980.
I used to say, 'Oh, you can't do that because you're crazy.'"
man said. "I became super sensitive to anything unusual about
myself. I became hypernormal. I would never make any references
to interpersonal violence around professionals, even jokingly,
because of the presumption of violence."
heightened sense of vulnerability was mentioned by other people.
One man said. "I can actually sense people's attitudes changing
toward me. You turn to things to close that vulnerability -
booze, drugs, etc. - but it makes things worse." Paul Ottenstein
said, "There is a sense of vulnerability when you've been a
patient. You feel like people are picking up on that and are
more critical of you. It's a result of stigma."
as a consequence of the erosion of self-esteem, some people
found it difficult to take charge of their lives. Paul
Ottenstein said, "A lot of times, people internalize the stigma
and the label means more than it should. It doesn't change you
personally, but it makes it more difficult to find your own
voice and make changes in your own life."
consequence was described by one man as a "mindset of
degradation." He said, "This is a mindset a lot of us get into
because of our label. It degrades us, makes us not care what we
look like. It adds to the shiftlessness, allows us to accept
being grouped with other mental patients and being publicly
Respondents described a number of other effects of internalized
stigma. The stifling of growth, productivity, and desire to
participate in growth-supporting activities was mentioned by a
number of people. For example, Neil Robinson wrote, "The first
effect stigma had on me was to cause me to withdraw from
activities that could have contributed to my recovery process.
My recovery may have been delayed a little, but eventually I was
able to see that I needed to participate and take on roles in
the community mental health system to provide others with a role
model while building my own confidence and changing attitudes of
professionals and the general public."
effect on the behavior of stigmatized persons was the process of
"learning to walk on eggshells," in other words, learning to act
like a mental patient: "Speaking softly, being nice, agreeing
with others, losing a sense of what one thinks or only
remembering it in the middle of the night, certainly not when
with people who assert some authority," was how Larry Plumlee
presentation of oneself in public was also affected, leading to
lost opportunities in employment, education, and relationships.
Anthony Lehman said, "Stigma leads to self-consciousness in
public situations. (People wonder), 'How do I manage it if it
comes up?' Some gets mixed up with the mental illness, paranoia,
etc., but a lot of it is the effect of stigma."
discussed the social isolation they felt. When asked about the
impact of stigma. Janet Foner said, "In the first year after my
hospitalization, I thought my life was over. I was an outcast. I
experienced life as extremely limiting, depressing, deadening,
over, the end of the line. I thought I couldn't go out of the
house, talk to anyone, leave my parents' house. I thought of
myself as incapable."
mentioned was the sense of feeling alone, burdened, and
different. Joel Stanley said, "I feel like I'm alone and
carrying this big burden. I will probably will never have a life
like everybody else, get married, have kids, have a house ... I
feel that I'm over the hill, all used up, nobody's interested in
me on any level."
Relationships with family and friends were also affected. For
example, one man felt a deep sense of isolation as a consequence
of stigma. He said, "The major consequence of stigma is social
death. The only social environment people have is the mental
health center. They live in isolation, don't have people to talk
to, often can't afford a phone. This isolation contributes to
ongoing crises people have. Their spirit doesn't want to die and
eventually people fight back."
back" was one of the responses to stigma suggested by
participants. In the next section, other responses will be
described as well.
Participants had many suggestions about responding to
experiences of stigma. Some of the suggestions focused on
strategies which might be used by the stigmatized person him or
herself, while others identified responses for staff and others
to pursue. Interestingly, while a number of the participants
identified stigma as a systemic issue, very few responses were
offered at that level. Most focused on individual and personal
responses, initiated either by the stigmatized person or by
mental health workers.
Responses Initiated by the Stigmatized Person
away from the mental health system entirely.
Some participants felt that any contact with the mental health
system would stigmatize them without offering corresponding
benefits. Stephen Holochuck suggested what he called, "radical
disengagement:" "You want to have minimal contact with
professionals. Don't let them make the parameters of your
reality. Don't get invested enough to fight with them." Another
person advised that people "never ever go for any kind of mental
treatment, even if it's just talking." while a third person
recommended that people walk away from services.
response acknowledges the systemic nature of stigma as well as
its power. Rather than suggesting people "fight the system," the
recommendation is that people stay as far away from the system
as possible in order to avoid stigma. This view is consistent
with observations offered earlier that "the whole system is set
up ... to create and preserve stigma," and "...stigmatization is
the function of a mental illness diagnosis. There is no way you
can claim 'mental illness' without all its legally stigmatizing
Self-help and peer support.
Other participants recommended contact with others who had had
similar experiences, through self-help and peer support. In
fact, Judi Chamberlin attributed her minimal experience with
stigma to being open about her identity and active in the
movement. She said, "My experience has been pretty unusual
because I've been so open about it. I got to write a book,
travel and speak. Why was my experience different? Being part of
a movement, part of a group ... seeing it as a rights issue from
the very beginning." This suggestion derives from the
perspective that stigma and the stigmatization process are forms
of oppression which can be addressed through
consciousness-raising and joining together with other affected
personal responsibility for addressing stigma - attitude
Some respondents felt that coming to terms with the fact that
most stigma comes from within was the first step to removing it.
Joel Slack said, "Just as stigma begins with ourselves, it must
end with ourselves."
Butler advised people to, "get off that SSI/SSDI mentality." He
also said, "Important messages: Think on your own. Trust your
gut. Don't do things until they're ready for you."
personal responsibility for addressing stigma - behavioral
A number of behavioral strategies which also focused on assuming
personal responsibility were suggested. Some examples:
personal inventory: If you want to be part of things, if
you want to be accepted, ask yourself, "What behaviors
set me apart from others?"
ordinary things, do things that make you feel good: Cook
a great meal, have a party, help others, think of happy
memories, get involved in sports, join groups.
the responses above, these strategies may improve an individual
person's circumstances but do not address systemic stigma.
Some participants advised that people with psychiatric labels
refrain from telling anyone. Others advocated selective
"telling." However, the opposite approach was recommended by
hide your history.
Judi Chamberlin, whose experience was summarized above, said, "I
have not experienced a whole lot of stigma myself, once I
stopped hiding. Hiding is internalized oppression. Most of the
time it's a positive experience. If someone goes public, there's
no way to blackmail. When I first went with Mental Patients'
Liberation Front, we got a chance to go on radio and (we) used
fake names. Then we asked, 'If we use fake names, what does that
say about our message?' That was a turning point."
Responses Originating from Staff and Others
Understand the dynamics of stigma.
Earlier, Joel Slack was quoted as saying that people with
disabilities must take responsibility to address stigma.
However, he also felt strongly that staff have responsibility to
create an environment where stigma cannot spread. He said, "In a
therapeutic environment, if staff understand stigma and its
dynamics they can keep it from growing."
to better understand stigma and its dynamics, Ken Terkelsen
suggested that providers create a "culture of self-examination."
This might take the form of an inventory of what is happening to
foster or eliminate stigma within a program.
rapport with people served.
Having relationships based on trust and responsiveness were
mentioned by a number of people as effective responses to
stigma. Feeling "heard" by staff was an important experience to
people. Some participants suggested giving people more chances
to talk, and focusing on building rapport with a single person
rather than feeling like one had to treat all people served
identically. Also mentioned was one of the most basic strategies
to respond to stigma: Treat people as human beings.
Slack said. "Staff don't understand stigma the first time they
treat people disrespectfully or as if they're different. They're
encouraging stigma to grow. If, for some reason, stigma is
growing in someone in one environment and they get transferred
to another environment, care givers have both the responsibility
and capacity to remove stigma by treating people with great
respect and dignity."
these recommendations contribute to valuing the person and
treating them with respect and dignity, they do not address the
social control aspect of stigma since it is possible to treat
one's subordinates with respect and dignity. In fact, as Supeene
(1990) writes, people who are treated with dignity while
remaining in a subordinate position can experience great
conflict: "The conflict lay between the staff's friendliness on
the one hand, and their authority on the other. Because they
could be supportive listeners I felt respected and cared for.
But they were also the 'experts' and they were in authority;
therefore they had the final say on what my problems really were
and what would be done about them, so I felt diminished and
Cultivate a sense of mutuality.
Some people recommended that staff share their own challenges
and difficulties in order to relate to people on a more equal
Accentuate the Positive.
This, and the related strategies which follow, are effective
responses to non-developmental attitudes and practices
identified by participants as stigmatizing. Carmen Meek said,
"The system lacks motivational tools for people who want to do
stuff for themselves. When you do get diagnosed, your
self-esteem is totally shot. The thing that works is to build
people up." She recommended focusing on wellness, capability,
and potential of people. Another respondent stressed the
importance of high expectations. Related to the above strategy,
other respondents recommended that people be given chances to
Chances to exercise responsibility.
One participant related this personal transformation from a
"mental patient identity" to someone who feels good about
himself: "Since I've had this job (working as an advocate in a
recipient-run program) I developed skills, started feeling good
about myself. I do a lot of grant writing. I'm developing
programs. I'm free to do what I want to do, handle a lot of
responsibility. I feel like I'm doing something important."
choices, more control.
Providing opportunities to have more control over one's life was
a commonly mentioned way of reducing stigma. Respondents
recommended that this be adopted in a number of ways, including
attitudes and roles of staff, more choice and control for
consumers within existing programs, and fundamental change that
focused on eliminating coercive treatment.
of attitudes and roles of staff, one respondent recommended that
providers ask service recipients, "How can I help?" People
suggested that consumers be assisted to play a greater part in
determining their own services and staff see themselves as
consultants to that process.
of greater control within existing programs, a number of
recommendations were made. Specific areas included trusting
people to take their own medication, affording opportunities to
establish a schedule that fits one's own life, and providing
more choices in activities. In addition, consumer perspectives
on case notes and reports were mentioned. At the systemic level,
consumer participation and leadership in decision-making on an
individual, program, and systems level was recommended as an
antidote to stigma.
fundamentally, some participants advocated the elimination of
coercion within mental health services as a way of eliminating
stigma. One participant said, "No coercion = no stigma." Ron
Thompson, who believes that "forced treatment" is a
contradiction in terms, recommended that the two be separated
conceptually. He said, "...two things are tied together that
shouldn't: force - involuntarism - and the practice of medicine
... When I say I'm against forced treatment, people hear me
saying two things I didn't say: (That) I'm against treatment and
(that) I'm against coercion."
Several participants advocated that connections with family,
friends, and other community members be fostered. Carmen Meek
said, "There's a difference between the artificial support
network of a therapist and the support provided by family or
friends. You're paying those people to be your support. It's not
normal. The system needs to create natural supports. The system
thinks of itself as, 'We're what people need to get well.' What
people need is family, friends and the community."
A number of other strategies were mentioned as well, including:
Ongoing support following consciousness-raising; allowing people
to experience hard times rather than attempting to prevent them;
providing incentives rather than punishment for growth;
community education; and, a focus on the unique and individual
qualities of each person.
for Further Work
from the responsiveness of participants, this is an important
topic for further work. Intended as an inquiry, the project
developed into a much larger undertaking than initially planned.
As the hours spent on the project multiplied, the enormity of
the topic became increasingly clear. There is considerably more
work, both academic and applied to be undertaken. Below are some
comprehensive literature review.
In conducting this inquiry, a number of relevant books and
articles were identified. While it was beyond the scope of the
project to fully incorporate relevant literature, it would be a
very beneficial undertaking for a larger-scale project.
detailed research on topics addressed in this inquiry.
All of the areas explored in this paper would benefit from
examination in more depth. For example, it would be useful to
interview current service users and compare their perceptions
with those of former service users, to catalogue in detail
specific features of programs thought to be stigmatizing, to
thoroughly identify practices which are non-stigmatizing, to
explore how programs can successfully change their practices,
thorough exploration of the theoretical material introduced in
the paper and its relation to program practices would be
especially helpful. For example, how do the three causes of
stigma - fear, stereotyping, and social control - contribute to
each of the practices identified as stigmatizing? Whereever
possible, I have offered some hypotheses, but they are
preliminary. What interventions might address each of the three
causes of stigma?
Catalogue Existing Interventions and Educational Materials
out what people around the country are doing to respond to
stigma, and, in particular, to address practices of mental
health programs, would be a useful undertaking. Although there
is not a great deal of work in existence, there are undoubtedly
people working on this topic.
arenas and audiences could benefit from education: Mental health
professionals, people with disabilities, family members,
administrators, community members, and faculties in higher
education programs that train professionals. Not only are new
educational materials needed but, perhaps more importantly,
access to these audiences must be developed. This will require
considerable persuasion and advocacy in order to generate
interest and openness to the topic.
Promotion of Effective Practices
there are many areas to pursue. Some examples: focus groups;
advocacy; technical assistance; community education forums;
writing books with people affected by stigma which combine
theory and practice; etc. Piloting an approach to service
delivery which is non-stigmatizing would be especially helpful.
Most of the strategies for addressing stigma offered in the
previous section address only one of the elements of stigma, and
are insufficient alone. Perhaps a useful exercise would be the
design of a multi-pronged approach to addressing stigma within
mental health services.
for the Study of Stigma
possible vehicle for implementing at least some of the above
would be the establishment of a center for the study of stigma.
While apparently there already exist several stigma
clearinghouses in the United States, this center could be a
valuable focal point for research, education, and promotion of
effective program practices. Such a center would be
consumer/survivor governed, although it could involve
collaboration with supportive researchers, educators and
advocates without direct experience as service recipients. For
example, much of the theoretical material in this paper draws
upon the work of a group of researchers who came together in the
early 1980's at a summer institute on Stigma and Interpersonal
Relations. This multi-disciplinary forum addressed stigma from a
number of perspectives, thereby enriching our understanding of
Center for the Study of Stigma could be either national or
regional in scope. Its main benefits would be the capacity to
link research, education, and promotion of practice in an
integrated fashion; its presence as a focal point to coordinate
efforts to address stigma; and its symbolic value, encouraging
sustained activity in this area.
interview, Joel Stanley said, "I'm struggling for existence like
everyone else ... to exist with dignity and hopes, to carve out
a niche for myself, to live with some enjoyment, to find some
people who will treat me decently." These are realistic goals
for a lifetime, goals that most of us would share. Yet, as we
have seen, there are many factors which stand in the way of
achieving these goals for people who have experienced stigma or
(1986) writes, "when people find it necessary or beneficial to
perceive the fundamental similarities they share with
stigmatized people rather than the differences, we will see the
beginnings of a real elimination of stigma" (p. 229). It's time
we tackle the economic, psychological and social barriers to
seeing these fundamental similarities, at least within the
mental health system.
C., & Crosby, F. (1986). Stigma, justice and the dilemma of
difference. In S. C. Ainlay, G. Becker, & L M. Coleman (Eds.),
The dilemma of difference (pp. 17-38). New York: Plenum
& Arnold, R. (1986). Stigma as a social and cultural construct.
In S. C. Ainlay, G. Becker, & L M. Coleman (Eds.), The
dilemma of difference (pp. 39-58). New York: Plenum Press.
M. (1986). Stigma: An enigma demystified. In S. C. Ainlay, G.
Becker, & L M. Coleman (Eds.), The dilemma of difference
(pp. 211-232). New York: Plenum Press.
E. (1992). The independent living movement and people with
psychiatric disabilities: Taking back control over our own
lives. Psychosocial Rehabilitation Journal. 15(3), 3-19.
Jr. (1990). Psychiatric stigma in the classical and medieval
period: A review of the literature. Comprehensive Psychiatry,
Jr. (1991). The culture and history of psychiatric stigma in
early modern and modern western societies: A review of recent
literature. Comprehensive Psychiatry, 32(2), 97-119.
(1961). Asylums: Essays on the social situation of mental
patients and other, inmates. Garden City. NY: Anchor.
(1963). Stigma: Notes on the management of spoiled identity.
New York: Simon & Schuster, Inc.
(1981). The Making of a Mental Patient... Unpublished masters
J. (1985). Crazies in the community: An ethnographic study of
expsychiatric clients in Canadian society - Stigma, management
strategies, and identity transformation. Unpublished doctoral
dissertation, McMaster University, Canada.
(1982). Mental patient status, work and income: An examination
of the effects of a psychiatric label. American Sociological
Review, 47, 202-215.
(1987a). Understanding labeling effects in the areas of mental
disorders: An assessment of the effects of expectations of
rejection. American Sociological Review, 52, 96-112.
Link, B., &
Cullen, F. (1983). Reconsidering the social rejection of
ex-mental patients: Levels of attitudinal response. American
Journal of Community Psychology, 11(3), 261-273.
Link, B., &
Cullen, F. (1986). Contact with the mentally ill and perceptions
of how dangerous they are. Journal of Health and Social
Behavior. 27, 289-303.
G., Cullen, F. T, Frank, J., & Wozniak, J. F. (1987b). The
social rejection of former mental patients: Understanding why
labels matter. American Journal ot Sociology 92(6),
Link. B. G.,
Cullen, F. T., Struening.
E., Shrout, P. E., & Dohrenwend, B. P. (1989).
labeling theory approach to mental disorders: An empirical
assessment. American Sociological Review, 54, 400-423.
Link, B. G.,
Mirotznik, J., & Cullen, F. T. (1991). The effectiveness of
stigma coping orientations: Can negative consequences of mental
illness labeling be avoided? Journal of Health and Social
Behavior, 32, 302-320.
(1967). Mental Illness and Social Processes. N.Y.: Harper
A., & Miller, D. T. (1986). Foreword. In S.C. Ainlay, G. Becker,
& L M. Coleman (Eds.), The dilemma of difference (pp.
ix-xiii). New York: Plenum Press.
L. (1990). As for the sky falling: A critical look at psychiatry
and suffering. Toronto: Second Story Press.
(1976, March 13). Six t.v. myths about mental illness.
Wahl, O. F. (1987).
professional conceptions of schizophrenia. Journal of
Community Psychology, 15, 285-291.
Wahl, O. F.,
& Lefkowits, J. Y. (1989). Impact of a television film on
attitudes toward mental illness. American Journal of
Community Psychology, 17(4), 521-528.
Wahl, O., &
Roth, R. (1982). Television images of mental illness: Results of
a metropolitan Washington media watch. Journal of
Broadcasting, 26(2), 599-605.
Wolfensberger, W. (1991). A brief introduction to Social Role
Valorization as a high-order concept for structuring human
services. Syracuse, NY: Training Institute for Human Service
Planning, Leadership and Change Agentry (Syracuse University).
Wolfensberger, W., & Thomas, S. (1983). PASSING: Program
analvsis of service systems' implementation of normalization
goals. Downsview, Ontario: Canada.
see Appendix A for advisory committee members.
see Appendix B for a list of probe questions.
for example, Ainlay & Crosby (1986), Becker & Arnold (1986),
Goffman (1%3), Wolfensberger & Thomas (1983), Wolfensberger
(1961), Herman (1981), Scheff (1967).