“Stigma is Social Death”:
Mental Health Consumers/Survivors Talk About
Stigma In Their Lives
Deborah E. Reidy
Education for Community Initiatives
187High Street, Suite 303
Holyoke, MA 01040
(413) 533-3584
February 1993
TABLE OF CONTENTS
Executive Summary 1
Background 4
The Dynamics of Stigmatization 7
Sources of Stigma 10
Assumptions, Beliefs and Practices People Found to be Stigmatizing 11
Introduction 11
“Staff Hold the Keys”: Power Issues 12
Status Differential 14
Regimentation and Deindividualization 17
Separating People from Ordinary Community Life 19
Non-developmental Approach 20
“Life in a Fishbowl” 21
Inadequate Access to Information 23
Lack of Attention to Personal Characteristics Which May be Stigmatizing 24
Language and Labeling 24
Other Practices 26
“Second-hand Services” 26
Cues in Physical Environment from Asylum Era 26
Effects 26
Responses 29
Responses Initiated by the Stigmatized Person 29
Responses Originating from Staff and Others 31
Suggestions for Further Work 33
Further Research 33
Catalogue Existing Interventions and Educational Materials 34
Further Education 34
Promotion of Effective Practices 34
Center for the Study of Stigma 35
Conclusion 35
Acknowledgements
It is 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.
Many 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.
Bob 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.
While I am painfully aware of the shortcomings of this inquiry I only hope it will stimulate others to add their contributions.
Executive Summary
Forty-six 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.
People 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.
While 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 be stigmatizing.
Issues 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.
The 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.
A number 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.
The absence of challenge or orientation to growth within the mental health system was also commonly described as stigmatizing.
The lack 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.
Some respondents indicated that they felt inadequate access to information was stigmatizing both to people with psychiatric disabilities and their families.
Other 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.
Major 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 supports.
The 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.
“Stigma is Social Death”:
Mental Health Consumers/Survivors Talk About
Stigma In Their Lives
Background
In 1963, 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.
Since 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 developed.
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 section.
In 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 stigma.
Despite 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.
This 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:
1.To stimulate discussion on the issue.
2.To 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 stigma.
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.
Forty-six 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 committee1, and 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.
Of the 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.
The 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 this report.
Whenever 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.
The 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.
The Dynamics of Stigmatization
Recent 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.
Ainlay 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).
Coleman (1986) suggests three main causes of stigmatization:
Fear 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.
Stereotyping 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).
Social control 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.
All three 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.
Coleman then offers an updated definition of stigma:
“To further 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).