ESTROFF, Sue - From Stigma to Discrimination

From Stigma To Discrimination:An Analysis of Community Efforts To Reduce

the Negative Consequences of Having aPsychiatric Disorder and Label

by Sue E. Estroff, David L. Perm, and Julie R. Toporek

Abstract

Discrimination related to psychiatric disorders andpeople diagnosed with them is receiving increasedinterest and attention from researchers, policy makers,and the general public There are diverse views abouthow best to alter and reduce what all parties agree arepersonally painful, socially wasteful, and morally inex-cusable practices that surround people with psychi-atric disorders. We report the results of a first stepnational survey of noteworthy on-the-ground efforts toreduce the negative consequences of having a psychi-atric disorder and label. The sample consists of non-traditional, innovative local efforts along with well-known programs. Nominations of exemplaryantistigma and antidiscrimination efforts weresolicited from a national data base developed for thisproject. Next, an expert consensus panel selected 36exemplary programs from among 102 nominations. Adescriptive analysis and summary of the shared quali-ties of exemplary programs are provided.

Keywords: Discrimination, stigma, psychiatricdisorders, community-based programs.

Schizophrenia Bulletin, 30(3):493-509, 2004.

When I am isolated and ignored because of mypsychiatric disability, when I am distinguishedunjustly and my rights disregarded, that is preju-dice; that is discrimination. Calling it by a word[stigma] only used for mental illness allows peo-ple to separate the wrong from other social injus-tices. Calling it by a word only used for mentalillness disallows us the political and socialchange leverage of language everyone under-stands . . . to remove real shame it must benamed correctly. We must expose shunning and

shaming as the prejudice and discrimination thatit is. (Caras 2000)

Efforts to counter and alter noxious views and treatmentof people diagnosed with psychiatric disorders are long-standing and widespread, but comparatively little isknown about their conceptual and operational elements,and their range, impact, and locales. Here we report theresults of a first step national survey of noteworthy on-the-ground efforts to reduce the negative consequences ofhaving a psychiatric disorder and label.

We sampled nontraditional, innovative local effortsalong with well-known programs to develop an informedgrasp of the conceptual and operational elements of activ-ities that are recognized as having a positive impact at thelocal level. It is important to emphasize that this studywas neither designed nor intended to assess the effective-ness or success of individual programs or activities in thesame manner as much prior controlled, experimentalresearch on stigma.1 Instead, we relied deliberately on thejudgments of the broader mental health and psychiatricservices community to establish the noteworthiness andimpact of the programs. The naturalistic design of thestudy permits us a unique sample of what strategies andcontent are viewed as effective by those with the mostdirect involvement in community efforts to reduce stigmaand discrimination. This preliminary survey cannot

'Over half (55%) of the programs nominated indicated that they col-lected evaluations or feedback from their audience. We did not collect oranalyze this information, but in further work this would be a valuableexercise.

Send reprint requests to Dr. S.E. Estroff, Department of SocialMedicine, CB #7240, University of North Carolina at Chapel Hill,Chapel Hill, NC 27599-7240; e-mail: [email protected].

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address in any definitive way important questions about"what works" to reduce discrimination and stigma.However, we do provide initial reconnaissance regardingthe types of existing programs, their constituents' assess-ments of the programs' impact, and their overall concep-tual and operational elements.

Background

Historical, Political, and Conceptual. Antidiscrimina-tion and antistigma programs, particularly the commu-nity-based efforts that are the focus of this study, are, defacto, advocacy activities that exist within and because ofsocial, political, and ideological contexts. This is researchabout activism and advocacy catalyzed by both structuralinjustices and deprivations of civil rights, and intenselypersonal experiences of exclusion and shame. It is there-fore essential to take account of these factors and forces inany analysis.

Discrimination related to psychiatric disorders andpeople diagnosed with them is enjoying a period ofrenewed interest and attention from researchers, policymakers, and the general public. The 1999 SurgeonGeneral's Report on Mental Health (U.S. DHHS 1999)and the President's New Freedom Commission on MentalHealth (2003) highlighted what many who experiencepsychiatric disorders and symptoms, and those who liveand work with these individuals, needed no such inquiriesto establish (Perlick et al. 2001; Dickerson et al. 2002;Corrigan et al. 2003£>). The despair, anger, and isolationthat result from various forms of exclusion, devaluation,discrimination, and humiliation related to having a diag-nosis of psychiatric disorder are persistent and debilitatingin and of themselves (Angell et al., in press). Two pub-licly funded national efforts, the Elimination of BarriersInitiative, and a Resource Center to AddressDiscrimination and Stigma, are under way, focused onstigma and discrimination directed at and experienced bypeople with psychiatric disorders. The diversity and pas-sions of these new and extant antistigma activities reflectchanges in language; changes in local, State, and nationalpolitics, policy, and treatment; and the usually creativetensions among the various constituents concerned withthe well-being, treatment, and experiences of people withpsychiatric disorders.

The basic fault lines encompass competing versionsof the nature, causes, and treatments for psychiatric disor-ders; differing positions on who speaks for whom; dis-putes about authority based on authenticity and experi-ence versus authority based on profession or technicalexpertise; the role of medications in promoting or imped-ing recovery, and whether medication should be the cen-terpiece of mental health services; disagreements about

the positive outcomes or the unintended consequences ofmedicalizing and biologizing psychiatric disorders; andthe use or prohibition of forced confinement and treatment(see also Crossley and Crossley 2001). While these arenot new debates (Clausen 1981; Link and Phelan 2001a,200\b), they have increased in volume and velocity dur-ing the current revival of concern. Many of these points ofdivergence surface inevitably in efforts to reduce stigmagiven the wide array of people and perspectives engaged,and provide the complex context for the current investiga-tion.2

In view of this context, it is tempting to hyphenate,combine terms by various means, and concoct unwieldyphraseology to ensure accuracy and to steer clear of intel-lectual and political potholes. In the end, clarity, accessi-bility, and accuracy in prose take precedence, and so weuse terminology that serves those ends. The subject matterof this study, the advocacy and activism of many who callthemselves by various designations, leads us to adopt"consumer survivor" as the most accurate and inclusiveterminology. Recognizing the longstanding and recurrentdebates about the accuracy and validity of psychiatricdiagnoses, we use various versions of the phrase "peoplewho have and have a diagnosis of psychiatric disorders."

Prior Research. We are not aware of previous attemptsto identify, describe, and analyze systematically the no-doubt-hundreds of ongoing on-the-ground programsnationally that address psychiatric stigma. The NationalStigma Clearinghouse and advocacy organizations such asHuman Rights Watch (2003) and the National Alliance forthe Mentally 111 (NAMI) are repositories for relevantreports, links, and contact information but do not have astheir mission the analysis of these activities. There is,however, a significant and rapidly growing body ofresearch about the components, mechanisms, and mutabil-ity or intransigence of prejudice, discrimination, andstigma directed at, perceived by, and experienced by peo-

2ln the arena of political activism and advocacy, as well as in schol-arly discourse about it, language is carefully scrutinized and infusedwith power. In 1992, for example, the American PsychologicalAssociation Committee on Disability Issues in Psychology releasedGuidelines for Non-Handicapping Language in APA Journals, for exam-ple (www PsychNbT.org). The guidelines describe "problematic" and"preferred" terminology directed at lessening unintentionally stigmatiz-ing language m professional discourse. It is a challenge to write fromthe center of this contested terrain (Penn and Drummond 2001). Inrecent years, the debate about preferred and accurate terminology forpeople who have been diagnosed with psychiatric disorders has beenenergetic and at times difficult. Torrey's (1997) editorial in PsychiatricServices challenging the validity of the term "psychiatric survivors"elicited "an all time record" of responses for a single article, accordingto the journal's editor (1997, p. 601). The journal published excerptsfrom 20 of the 70 responses illustrating the range of agreement and dis-agreement with Torrey's position.

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pie who have and have a diagnosis of psychiatric disor-ders. Nearly all of these studies have been controlled,constructed quasi-experimental investigations. A recentreview of research on efforts to reduce stigma concluded,"One need for future research is for studies to be con-ducted using naturalistic settings that translate into real-world situations and that are possible to implement as ameans of reducing stigma in the general population"(Couture and Penn 2003). This gap in information andunderstanding motivated and guided this study.

In view of the pragmatic and limited focus of thisstudy, we have limited our review of prior and founda-tional work. The repeatedly reported finding that the pub-lic's fear of violence by persons with psychiatric disordersprovides a salient backdrop (Link et al. 1999; Phelan et al.2000) but is not foregrounded here. Corrigan and col-leagues (2001, 2002, 2003a, 2003ft; Corrigan and Penn1999), and Penn and colleagues (1994, 1999; Penn andDrummond 2001), in their work on stigma reduction,have contributed much of the research that is mostdirectly relevant to this study.

Various approaches to reducing psychiatric stigmahave been attempted, primarily through education andpromoting contact (Corrigan and Penn 1999). In general,the findings suggest that both approaches are effective inreducing stigma, with contact effects being especiallyimpressive and robust (Kolodziej and Johnson 1996;Corrigan et al. 1999; Couture and Penn 2003). These con-tact effects appear to be strongest if the participants meetas equals, if they work cooperatively, and if institutionalsupport is present. Unfortunately, unanswered questionsand limitations plague work in this area.

Many studies have examined the effects of previousself-reported contact on stigma, rather than how prospec-tive contact changes stigma (e.g., Link and Cullen 1986;Roessler and Salize 1995; Ingamells et al. 1996;Angermeyer and Matschinger 1997; Arikan and Uysal1999; Holmes et al. 1999; Read and Law 1999). In thosestudies in which direct contact was measured, the manipu-lation often took place in the context of contrived labora-tory situations (e.g., Desforges et al. 1991; Nosse 1993) oras part of a course and/or training program (e.g., Arkarand Eker 1997; Corrigan et al. 2003ft). In addition, themechanism(s) underlying stigma reduction, as a functionof contact, is unknown. In other words, are changes instigma-related attitudes due to changes at the cognitivelevel (i.e., recategorizing individuals with mental illnessas "us" rather than "them"; Gaertner et al. 1990) or due todampening of physiological arousal (e.g., habituation;Blascovich et al. 2001)?

Corrigan et al. (2002, 2003a) found that while fear ofpeople with psychiatric disorders is strongly related toanger and avoidance, beliefs about controllability ofbehavior and responsibility for the condition were not

nearly as strongly related to sympathy, pity, or helpingbehaviors. Attribution theory was a much less robust pre-dictor of their results than a danger appraisal model.

Applying attribution research to community-basedstigma reduction may be problematic in that beliefs aboutcause, controllability, and responsibility exist within com-plex cultural contexts and biographical experiences thatvary widely among respondents rather than in a linear,logical relationship, as the theory asserts (Das 2001).Estroff et al. (1991) reported that many of the personswith serious psychiatric disorders in their study heldviews about the cause, meaning, and mechanisms of theirproblems that could be considered contradictory if onehad a one-dimensional (e.g., medical, emotional) modelof psychiatric disorder. Among the consensus panel forthis study, there were similar, widely differing views ofthe nature and causes of mental illness, and even how torefer to them. One panel member said, "When a programuses medical model language such as 'stigma of mentalillness,' 'symptoms,' 'chemical imbalance,' 'illness likeany other illness,' then they are putting out ONE particu-lar point of view . . . and excluding the many other pointsof view. The outmoded language that narrows this issue toa medical one excludes many people."

This view was countered emphatically by anotherconsumer survivor panel member, who said, "The mentalhealth as illness theory works for me. It works for a lot ofpeople that I know. I would love to be able to pretend thatI can make a 'choice' whether or not to take medicine,without mentioning the consequences of that action. Ofcourse, when (sometimes because of insurance questions)I have been 'off' my medications, I definitely rememberthe consequences. Are there problems to the medications?Well, yes. Do I choose to keep taking them? Well, yes."

Corrigan (2000) suggests that a shift in attributions,from controllable to uncontrollable, may correspond witha change in feelings, from anger to sympathy, whichshould augment helping behavior. It is possible that sus-tained interpersonal contact with people with seriousmental illness debunks the myth that their condition isunder their control. Thus, more positive interpersonal con-tact could have beneficial effects in reducing the con-sumers' experience of being stigmatized and in improvingcommunity members' attitudes toward individuals withserious mental illness. However, it is unclear whether one,a combination, or any of these mechanisms is importantfor changing stigmatizing views.

It is as plausible that if people believe that a personwith serious mental illness did not cause and cannot con-trol the illness, more fear and distance related to unpre-dictability will result (Read and Law 1999; Corrigan et al.2003a). In addition, some people with psychiatric disor-ders object strongly to the assertion that what they have isonly a disease, finding this attribution degrading (Clay

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1994; Granger 1994). Others find meaning and comfortwith a "no fault" medical diagnosis (Estroff et al. 1991;Corrigan and Penn 1997).

As is clear from the previous discussion, attitudesrelated to people with psychiatric disorders and stigmaamong the public and persons with serious mental illnessare multidimensional, and an array of informed interven-tions that recognize and address themselves to this nexusof difference are required in response (Tolomiczenko etal. 2001). Beliefs and understandings about responsibilityand controllability in relation to people with psychiatricdisorders tread on ambiguous, powerful, and contentiousturf. In this volatile and shifting terrain, assumptionsabout the relationship among cause, control, and responsi-bility should be subject to investigation rather thanassumed.

It would indeed be unfortunate if efforts to reducediscrimination and stigma based on laboratory and con-trolled research had the unintentional effects of furtheralienating or humiliating consumer survivors and cat-alyzing additional negativity among the public. It isunclear and generally unexamined whether and how lab-oratory-based stigma reduction strategies can beexported to the community. At the same time, we need toconsider whether and how stigma reduction approachesthat are effective in the community can inform futureresearch in controlled settings. The programs describedin this article provide an opportunity to investigate thesequestions.

Conceptual Model

Figure 1 presents the conceptual and operational elementsthat were elicited in the study instruments. We derivedthese elements from prior research on stigma, conceptualanalyses of discrimination and stigma, and our experiencewith both research and implementation of community-based stigma reduction activities.

Because we were investigating on-the-ground pro-grams and activities, we were interested in their philo-sophical and practical dimensions, and in the performativemodes that were used. The conceptual elements consist ofpresentational styles or approaches (activities), perspec-tives, and program focus and goals. While there is adearth of systematic research on these topics, a great dealof information is available from published and unpub-lished consumer survivor accounts and from nationaladvocacy organizations. Much less is known about theoperational and pragmatic components of these programs.As a result, we probed widely for information that wouldbe useful for eventual generalization and dissemination ofworkable strategies for implementing and sustaining otherefforts. Operational elements are reported below as partic-

ipants, presentation modes, program duration, funding,connections, audience, and impact.

Methods

National Survey. Approximately 670 letters requestingnominations of noteworthy antistigma and antidiscrimina-tion programs were sent to the public mental healthauthorities in every State, consumer and family advocacyand support groups in each State, State protection andadvocacy agencies, national mental health practice organi-zations, and a variety of other potential sources of infor-mation. A LexisNexis search was conducted to identifylocal or otherwise unknown programs mentioned in thepress, as well as more traditional electronic searches ofjournals and publications related to mental health researchand practice. The Web sites of consumer survivor andother disability rights and advocacy groups were alsosearched. After explaining the nature and goals of thestudy, the request for nominations sent to all of thesesources invited them to identify and describe programs intheir locale that were successful, effective, or otherwiseworthy of note.

An extensive questionnaire accompanied the requestfor nominations and constituted the primary data collec-tion instrument for the study. The survey content deriveddirectly from the conceptual model is illustrated in figure1. Structured checklist questions covered the forms ofpresentation of the program or activities, the approach orphilosophies endorsed, the number and type of partici-pants, the organizational components of the program suchas funding and relationship to other groups, the audiencesand impact of the program and its duration and frequencyof activity, and open-ended queries probed for qualitiesthat the nominator thought were exemplary. There wereopportunities for the respondents to make additions to anyof the checklist items, but this option was seldom used.The survey was developed specifically for this study andwas not subjected to psychometric analysis because ofthis limited and preliminary use. The near-absence ofinquiries and additions from respondents, and the largenumber of completed surveys, attest, in a limited way, tothe face validity of the questionnaire. Respondents couldelect to complete an electronic version or provide infor-mation over the telephone.

We received 117 responses, and 102 were completeenough to be included in the sample. In an effort toincrease the sample, most nonresponders were contactedonce, and incomplete nominations were followed up bytelephone interviews when possible. The response rate ofapproximately 17 percent was disappointing. However, inview of the exploratory nature of the study, our limitedtime frame and resources, and the wide geographic distri-

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Figure 1. Conceptual and operational elements of programs that counter discrimination and stigmaassociated with mental disorder

Conceptual Elements

• Humorous approach

Path) roach

Piuteil/Mtertlve advocacy approach

Cotaborattve approach

Cornplcrnentary/attarngMve meoTcine approach

Personal approach

Focus on heaang perspective

Evidence-based vs. anecdotal (cperationaifconceptuar)

Algnment wtth other oUabfflfles

Disabttty a* a social construct and coodHfcm perspective

Spiritual perspective

Recovery perspective

Human rtuKsAtouti^naUuii/empowefment perspective

Attto others vs. different from others

Focus on spedflc issue such as forced mediations

Pursuit of tangftrie outcomes

Pursuit of personal acceptance

PoBUcal action for systems change focus

Motivation (for resources)

Primary focus on educating others

Partnership in treatment—equity of power in treatment

Consumer survivor-onty Ideology

Collaborative Ideology

One Ideology and one label

IRness/medical Ideology

Multiple Ideologies and labels

Number of people hvolved

Soto practitioner vs. group

Participants—consumer, professional, advocate, fmmly

member

Pi esei itatlon nyyi* -fp^f^^i. movies, sUes,

posters, vignettes, audance intaracHon

Fundkig—charge/no charge, source

Duration

Autonomy—freestanding or connected to other

evenVcontext

Audience—who

Amount of activity

Focus—media, pc«csypoicy. Incidents

Or'tf# nt/ftI kn>fll structure sod

Impact

bution of responses (38 States), we view this initial sam-ple as adequate.3 Information from the questionnaires wasentered into a data base containing each of the items in

3Heberlein and Baumgartner's (1978) review of response rates tomailed questionnaires found that about 5 percent of the studies reportedrates similar to ours. It is quite likely that many of our questionnaires"got lost" within State and local mental health agencies because we hadto rely on Web sites and other directories for the names of potentialrecipients, who were in positions with frequent turnover.

the survey. A text file was created for narrative commentsand assessments that accompanied many of the nomina-tions. Supporting information such as books, publications,brochures, Web sites, videos, and even T-shirts accompa-nied some of the nominations. Descriptive statistics, pri-marily frequencies, were derived from the data base.

Expert Consensus Panel. The next phase of the studyentailed the work of an eight-member expert consensuspanel comprising mental health providers, consultants,

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researchers, educators, and consumer survivor activistswith a wide range of views and experiences. The panelistswere selected by the principal investigator based on theirextensive prior experience with discrimination and stigmareduction activities; mental health service provision;research on stigma and mental illness; administration ofand consultation with mental health services in many dif-ferent locales and at different levels of mental health sys-tems; and mental health advocacy and activism. Some ofthe panelists also had experienced psychiatric disordersfirsthand. They represented a geographically, demographi-cally, and ideologically diverse group and were paid fortheir participation.

Prior to two 4-hour teleconferences, panel membersreviewed a description of the study and its conceptualframeworks, background readings on stigma, and all ofthe nominations. Their primary task was to select the mostoutstanding from among the programs in the sample. Noguidelines were provided to the panel regarding whatshould constitute an exemplary program, and there wereno restrictions on the number of exemplars they couldselect. Instead, we deliberately sought their views ofwhich programs were exceptional and what conceptualand operational elements contributed to this assessment.This strategy was essential to the consensus process andto the goals of the study. We chose an inductive approachbecause this was an exploratory study and because we didnot want to predetermine or influence one of the majoroutcomes of the study—that is, the identification of whatcontributed to the panel's selections of outstanding dis-crimination and stigma reduction activities.

The panel's work was facilitated by the principalinvestigator, following a structured agenda developedbeforehand and agreed to by the group. The first meetingfocused on making introductions, setting ground rules,and coming to consensus on basic definitions and princi-ples. At the second meeting, panel members presentedtheir selections for exemplars, having circulated theseelectronically prior to the discussion. The remainder ofthe session was devoted to extensive attention to theexemplary qualities of the selected programs and todebate about inclusion of additional programs among theexemplars.

To establish a common understanding of the basis forthe programs under review, the panel reviewed and dis-cussed extensively various definitions of stigma. The five-component definition of stigma proposed by Link andPhelan (2001a, pp. 367-368) was agreed upon as the mostcomprehensive and dynamic. The components are (1) dis-tinguishing and labeling differences, (2) associatinghuman differences with negative attitudes, (3) separatingus from them, (4) discriminating and reducing status, and(5) linking stigma to power. This formulation was particu-larly appealing because of the inclusion of interpersonal

and social mechanisms such as differences in powerbetween stigmatizers and their objects. As Link andPhelan observe, "What matters is whose cognitions pre-vail—whose cognitions carry sufficient clout in social,cultural, economic, and political spheres to lead to impor-tant consequences for the group that has been labeled dif-ferent" (2001a, p. 378). As one panelist explained in morepersonal terms, "Prejudice and stereotype exist in themind of the other. They are beliefs, not tangible.Discrimination exists in the actions of the other, and ismeasured by generally accepted social standards andlaws. Stigma exists as the mark on me that I carry, myshame. It doesn't exist without my shame. If I don't takeon the shame there is no stigma."

Additional discussion about the experiential andemotional dimensions of being stigmatized led to agree-ment about the need to include the intrapersonal domainin the assessment of the nominees' efforts and perspec-tives. In the words of one panelist, "And shame . . . Idon't know why shame isn't more addressed, [and asanother panelist added], pride. Is it too uncomfortable tospeak of, too shameful an emotion to even feel? Whomelse would I make uncomfortable if I said, 'I wasashamed'?"

The panel members also commented on and critiquedthe conceptual framework for developing a descriptiveand analytic typology of these programs (figure 1) andproposed underlying principles and themes for exemplaryactivities. With this foundation, the panel reached agree-ment on 36 exemplary programs. Another 20 nomineeswere judged to be exemplary by at least one panel mem-ber, who had the opportunity to make a case for inclusionas an exemplar to the rest of the group. At the end of dis-cussion for each of these, the entire panel had to agree toinclude or exclude the program as an exemplar.

The panel discussions were taped and were reviewedrepeatedly to construct a preliminary version of the exem-plary qualities discussed below. After the teleconferences,all panelists prepared and circulated for comment theirviews of exemplary qualities in the programs that wereselected. Then a synthesized draft of exemplary qualitieswas circulated to the panel members for additional com-ment and amendment.

Findings

Despite the wide array of nominations and the diversebackgrounds and perspectives among the panel, there wassignificant agreement on 5 exemplary programs (5+votes) and some agreement on 31 others (12 received 2-Avotes, and 19 had 1 vote and survived extensive discus-sion within the group). Twenty-four States are representedamong the 36 exemplary programs selected.

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There are substantial similarities in both the concep-tual and the operational domains within the entire sample,and between the exemplars and other programs. Becausethere was prior selection for outstanding qualities by therespondents, we recognize all of the nominated programsas "exemplary," in a sense, but for purposes of clarityrefer in this article to the 36 programs selected by thepanel as "exemplary" and the remaining programs as"other." Based on the work of the consensus panel, thedata base was divided into exemplary and other pro-grams, and simple cross tabulations were conducted toidentify any statistically significant differences betweenthe two types of programs. There were none. Where therewere differences, these were in large part differences ofemphasis. Tables 1 and 2 describe the sample in terms ofconceptual and operational elements.

We review and discuss the findings for all the pro-grams and then discuss the qualities of exemplars and theother nominees in light of the consensus panel's process.

Activities

Contact and Education. Public presentations such asindividual speakers, training workshops, and speakersbureaus that involve contact between consumer survivorsand the public are nearly universal among the sample.Half of the programs involved individuals "telling theirstories" or otherwise educating various audiences aboutpsychiatric disorders and the people who live with them.What was somewhat unexpected is the extent to whichtraining, consulting, and presenting at conferences arepracticed. This suggests that the programs in the study aretargeting their work and that they are increasingly askedand allowed to participate in arenas that even a decadeago would not have seen such inclusion. The trainer, con-ference presenter, and consultant are in positions ofauthority and are endowed with expertise. This representsa change in how mental health professionals and con-sumer survivors interact, and it indicates that there isgrowing consumer survivor empowerment and impact onmental health providers and practices.

A 1993 study on stigma commissioned by theCommunity Support Program at the National Institute ofMental Health (now the Center for Mental HealthServices [CMHS]) (Reidy 1993, p. 1) concluded, "Whilerespondents cited a variety of sources of stigma, most fre-quently mentioned were the attitudes and practices of themental health system and its workforce." Reidy's findingsreflect a growing recognition that some consumer sur-vivors see treatment experiences as significantly debilitat-ing in and of themselves (Wahl 1999; Estroff 2004).Angell et al. (in press) update and add detail to this dis-cussion by categorizing stigmatization by mental health

Table 1. Sample conceptual elements (n = 102)

Conceptual elements

ActivitiesIndividual speakersWorkshops/trainingVideo/slide presentationsSpeakers bureausConferencesConsultingPublicationsConsumer-run businessesDrama troupesMedia watchesArt/creative expressionOther drama activitiesOther activities

Perspectives and approachesStories/personal experiencesRecoveryDifferent from othersHuman rights and discriminationCollaborationPartnership in treatmentEquity in power with providersMedical/illnessSpiritualitySpecific issuesEvidence/researchSimilar to othersPoliticsConsumer survivors only

Goals and focusEducate publicIncrease acceptanceIncrease understanding of experienceBenefit consumers in recoveryIncrease tangible resources

%

51.042.233.329.428.422.518.613.714.713.713.78.8

49.5

83.380.479.080.469.662.759.854.946.144.141.235.023.5

4.9

89.288.280.475.549.0

Note.—Items within categories of this table are not mutuallyexclusive, so the percentages reported do not sum to 100 by cat-egory. There are missing values for some items.

professionals as dehumanization, infantilization, and low-ered expectations for improvement. Thus, the focus ontraining and consultation within mental health systems byantistigma and antidiscrimination programs is a promisingapproach to this most difficult area.

Historian of psychiatry Roy Porter observes, "Itwould be silly to blame all this scapegoating on doctors,for beliefs about sickness are not simply matters ofpathogens but functions of social tensions too.. . . What isclear from history is that if we are going to take thestigma out of mental illness, we cannot simply leave thattask to the doctors" (1998, p. 1050). Training and consul-tation thus may efficiently address and begin to repair the

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Table 2. Sample operational elements (n = 102)

Operational elements

No. involved Median

Group effort

Solo practitioner

Program has grown since inception

ParticipantsConsumersAdvocatesHealth professionalsFamily membersHealth-related professionalsOther participants

Presentation modesSpeeches/talksVignettesVideosSlidesPostersOther presentation modes

Program duration<2yrs£ 2 yrs and < 5 yrs2 5 yrs and < 10 yrs10+ yrsOne eventOngoing

FundingPrivate donationsState MH agencyLocal MH agencyAttendance feeUnited WayOther sources

ConnectionsOther organization or eventFreestandingState or local governmentNAMILocal MH agencyOther advocacy group

AudienceCommunityMH providersChurch/religious groupsConferencesService clubsSchools, students

ImpactPowerful connectionsRequests for expertise or inputForcing of change

%

4,range 1-1,000

77.2

20.8

56.6

81.466.739.240.226.524.5

65.738.627.522.516.748.0

31.232.511.323.88.9

87.1

53.043.429.026.35.2

54.4

59.832.015.718.97.8

20.6

84.370.653.952.048.034.4

58.049.041.0

Table 2. Sample operational elements (n = 102)—continued

Operational elements %

Impact—continuedPolitical cloutParticipation in advisory capacityPrevious awardsRetraction of articles

31.035.019.822.0

Note.—MH o mental health; NAMI - National Alliance for theMentally III. Items within categories on this table are not mutuallyexclusive, so the percentages reported do not sum to 100 by cat-egory. There are missing values for some items.

reciprocal dynamics between "social tensions" about peo-ple diagnosed with psychiatric disorders and the attitudesand approaches to treatment of mental health profession-als.

While some research suggests that training has a lim-ited impact on stigma (Shor and Sykes 2002), many of thestudy respondents had a different view. One consumer-rungroup reported, "We are seeing concrete change happen asa result of this work [training]—reduction in seclusionand restraint, making stigma training (done by us) part oforientation in community psychiatry programs, etc. Themost common comment on the evaluation forms is 'I hadno idea I had these stigmatizing ideas and behaved in stig-matizing ways—until this workshop.'" As one consensuspanelist concluded, "Interpersonal contact with individu-als who have experienced shame, hearing voices, seeingthings, etc., continues to be one of the best practices,when it is in a setting that allows for real exchange." It isperhaps the combination of contact with equality in statusand recognition of expertise that occurs in training, work-shops, and conference seminars that accounts for the posi-tive impact on both the audience and the presenters.

The contact hypothesis suggests that factors such asequal status, perceived pleasantness, cooperation, inti-macy, and the voluntary nature of contact are all impor-tant in changing peoples' attitudes toward stigmatizedgroups (Desforges et al. 1991; Islam and Hewstone 1993;Kolodziej and Johnson 1996). Contact is more effectivewhen the participants are seen as equals, when contact isintimate (one-on-one), and when people work together ina cooperative rather than competitive manner. It is reason-able to conclude that contact and education work mosteffectively together, and that the kind and quality of con-tact are crucial factors in altering stigmatizing views andbehaviors. The activities of the programs in the sampledemonstrate widespread tacit recognition of this surmise.

Expressions and Transactions. Aside from structuredspeaking and educational activities, drama and otherart/creative expressions are each reported by about 14 per-

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cent of the programs. These range from interactive dra-matic presentations of the experiences of psychiatric dis-order and treatment, to displays of art and photographydone by consumer survivors. A similar proportion ofactivities against discrimination take the form of con-sumer-run businesses such as transportation, courier anddelivery services, and coffee houses and bakeries. Theintentions here are to engage in everyday commerce withthe community at large and thus counter negative stereo-types, as well as provide meaningful employment andmanagerial experience for consumer survivor employees.Notably few programs in the sample included mediawatch-type activities. An impressive expanse of othertypes of activities included employment bureaus; housingprojects; community walks, musical festivals, and similarannual events; radio and television programs hosted byconsumer survivors; and involvement in local and Statecommittees and commissions related to political processesand services.

Perspectives and Positions. The various perspectivesand approaches to mental illness evident among the pro-grams (table 1) reflect the wide array of views and ideolo-gies within mental health activism and advocacy, and to acertain extent within the scholarly and practice arenas.Nearly all the programs, around 80 percent, endorsed theview that recovery is possible, that the personal experi-ences of consumer survivors convey this and other impor-tant messages, and that people with psychiatric disordersare different from others but have an equal claim tohuman rights and to freedom from discrimination.Recovery language and activities were widespread amongprogram descriptions and publications. Along with recov-ery, the embrace of empowerment and enhanced con-sumer survivor control, rights, and "voice" are clearlyfocal points among many groups.

Comparatively few (35%) programs focused on thefact that people with psychiatric disorders are similar toother people, while almost 80 percent subscribed to the"difference from others" perspective. This is worthy ofnote because normalization has been a prominent strategyin antistigma campaigns since their inception. One of thefirst mental health—related posters to be circulated nation-ally, in the early 1900s, reads, "Some people believe thatmental illness is a disgrace . . . but SCIENCE teaches,Mental illness is no disgrace. Like physical ills, it requiresprompt medical care." In the same tradition, NAMI dis-seminated a poster during the 1990s that featured a crosssectional drawing of a head and brain with a caption thatdeclared, "The brain is part of the body. It, TOO, canbecome ILL. Schizophrenia [and] depressive disorder areno fault brain illnesses" (emphasis in original), and NAMIprefers the term "neurobiological disorder" to mental ill-

ness. Alternately, some consumer survivor groups voice avariety of objections to unidimensional or predominantlybiological and medical views of psychiatric disorders.From this perspective, some antistigma campaigns mayhave the unintended consequence of tacit psychiatriclabeling that in turn obscures the civil and social rights,and other identities, of consumer survivors.

Medicalization as a normalizing strategy to reducestigma has yielded mixed results and has become a con-tested tactic and perspective among various constituencieswithin a diverse and vocal mental health activist commu-nity (Crossley and Crossley 2001; Corrigan et al. 2003a).Indeed, only slightly over half, or 54.9 percent, of thesample included medical and illness-related paradigms intheir approaches to stigma.4 Spirituality as an approach topsychiatric disorder and stigma was endorsed by nearly asmany programs (46.1 %). In view of the enormous stakeand roles that consumer survivors have in the work ofstigma and discrimination reduction, these perspectivesdeserve particular attention.

Over two-thirds of the sample were described as hav-ing a collaborative approach to their work (69.6%), astance further borne out by their report that nearly 60 per-cent have ongoing connections to other organizations, and43.4 percent receive some funding from State mentalhealth authorities (table 2). Seeking partnership andequity in power with mental health providers was alsowidely reported among the sample, consistent with theempowerment values and practices evident in so manyprograms. Overall, very few programs (4.9%) take a con-sumer survivors-only approach to their work. It is appar-ent that empowerment goals and seeking to adjust the bal-ance of power between providers and consumer survivorsdo not preclude collaboration in efforts to reduce discrim-ination and stigma.

Finally, the vast majority of the sample (nearly 90%)have in common the goals of educating the public toincrease acceptance and understanding of the experiencesof people who have and have a diagnosis of psychiatricdisorders, and recognition of the direct benefits to partici-pants in their own paths to recovery. Those programs that

4This is all the more remarkable because we inadvertently undersam-pled programs that take a decidedly nonmedicai, non-illness-orientedapproach. We learned in the course of the study that a great many con-sumer survivor activist and advocacy organizations did not respond toour solicitation because we used the word "stigma" instead of the words"discrimination" and "prejudice." These organizations practice "inclu-sion" in the sense that they do not exclude membership by consumersurvivors who are comfortable with medical models of psychiatric dis-order and who rely on and adhere to medication as a pan of treatment.However, in general, as demonstrated amply in their publications andactivities (Crossley and Crossley 2001; Angell et al., in press), they donot endorse a medical, biological, or neurocherrucal view of psychiatricdisorder and focus on human and civil rights and discrimination.

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indicated a specific issue focus reported also working onempowering consumer survivors by preparing them to beproviders or offering them training and education in advo-cacy, rights, and politics; resources and systems change;and life skills acquisition.

Despite common goals, the programs in the sampledemonstrate creativity and imagination in theirapproaches, and significant variation in their ideologiesand principles. The programs use multiple combinationsof methods, media, and talents, and an equally eclecticmix of collaborations and connections. One inescapableconclusion from this descriptive analysis is that no singlemessage or approach to reducing discrimination andstigma will have the desired impact or be acceptable to allconstituents.

Operations

Table 2 summarizes the operational dimensions of thesample and provides a rare profile of organizationalframeworks and practices of extant antistigma andantidiscrimination efforts. Most respondents indicated thatthey worked in groups (77.2%) whose size varied sub-stantially and that their activities were ongoing (87.1%).Solo practitioners, primarily authors and individual speak-ers, account for slightly less than one-quarter of the nomi-nees. Over half of the programs reported that they hadgrown since their inception. Undoubtedly, local andglobal factors have influenced the increase and spread inactivity apparent in the sample. Crossley and Crossley(2001, p. 1488) analyze a similar transformation "frompersonal voices of lone description to increasing collec-tivization, [and] challenge" in the mental health usermovement in the United Kingdom, crediting the transfor-mation to the burgeoning of consumerism in health care ingeneral, and the "new entrepreneurs" of self-help, newpsychotherapies, and complementary medicine. TheInternet has only accelerated the development of commu-nications and thus communities of people with the mostexotic or the most familiar diagnoses, diseases, and differ-ences. Part of the growth evident in the sample is nodoubt due to NAMI's recent introduction of the In OurOwn Voice and Breaking the Silence national antistigmacampaigns. Nineteen of the nominees were local versionsof or national participants in this effort.

In addition to the growth of programs, the duration ofthose in the sample is noteworthy. About two-thirds ofnominees have been in operation for over 2 years, andalmost one-quarter have been in existence for over adecade. The survival and success of the nominees may beinterrelated, and so this endurance profile may not be gen-eralizable to other antistigma programs. Still, the picturethat emerges for this sample is of programs that are

funded in large part by State and local mental healthauthorities (43.4% and 29.0%, respectively) in addition toprivate donations (53.0%), with connections to State orlocal government or local mental health agencies (23.5%),other advocacy groups (20.6%), and NAMI (18.9%).

These noteworthy programs display an embedded-ness within the community and in collaborative advocacygroups that undoubtedly enhance their endurance, mem-bership, and impact. Over half, 58.0 percent, of the pro-grams are described as having connections to people inpowerful positions, related undoubtedly to the numberthat are asked for expert input (49.0%) and that participatein advisory groups (35.0%). These ongoing relationshipsvia funding and participation as experts and advisors—notjust as recipients of services or treatment—in policy deci-sions, allocation of resources, and guiding principles andphilosophies may have the most potential for reducingstigma within, and perhaps outside of, mental health sys-tems.

Exemplary Programs

Exemplars. Space considerations preclude providingdetailed information on all 36 exemplars. The top five aredescribed briefly below, followed by an analysis of distin-guishing qualities identified by the panel for the entiregroup of exemplars.5 The text in quotes is derived fromnomination and program materials and is included asillustrative rather than evaluative. A list of the exemplaryprograms that received more than 2+ votes is included inthe appendix.

Andy Zenke Youth Empowerment—Youth RadioKDNK, Carbondale, CO. In collaboration with twolocal nonprofit public radio stations, this project involvesstudents from several high schools with mental health,educational, human services, and broadcasting profession-als in the production of weekly radio programs devoted toboth general and specific mental health topics. A nonprofitorganization that receives funding from local and Statemental health authorities, private donations, and localhigh schools is the umbrella for the project. Now 4 yearsold, the project involves about 30 students per weeklyprogram and has expanded to include video as well asaudio programming. "It helps youth to have a voice in thecommunity, to learn team building and life career skills,as well as counseling to support recovery."

Central Iowa Players Stigma Busters DramaTroupe, Des Moines, IA. Founded in 1989, the StigmaBusters is a volunteer improvisational theater group that

'Contact information for these programs is available from the firstauthor

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performs widely in the Midwest and offers training andworkshops. It is directed by a professional actor/directorand is affiliated with NAMI of Iowa and the RainbowCenter, a psychosocial clubhouse. "Performances consistof funny, dramatic, sometimes poignant, scenes coveringa wide range of events from the player's experiences asclients of the mental health system and from other aspectsof their lives. . . . We are a theater group, not a therapygroup. It just happens that some of the side effects aretherapeutic. We work hard at perfecting our craft, mirror-ing the world as we see it, and as it sees us. Our resultsare powerful and real. . . . We touch a lot of people—weput a face to mental illness."

Georgia Peer Specialist Certification Project,Atlanta, GA. This program is a joint effort of theGeorgia Division of Mental Health, DevelopmentalDisabilities and Addictive Disease, and the GeorgiaMental Health Consumer Network, and has been fundedsince 2001 by Substance Abuse and Mental HealthServices Administration (SAMHSA). "It is the mission ofthe Georgia Peer Specialist Certification Project to iden-tify, train, certify and provide ongoing support and educa-tion to consumers of mental health services to providepeer supports as part of the Georgia mental health servicesystem and to promote self-determination, personalresponsibility and empowerment inherent in self-directedrecovery." To date, 119 peer specialists have receivedtraining and are employed as specialists in various sectorsof the mental health system. The training is intensive andoffered several times per year, as are continuing educationworkshops for already certified peer specialists. The pro-ject operates a comprehensive Web site and has developedan extensive curriculum.

Mental Health Empowerment Project, Albany,NY. The Mental Health Empowerment Project is a con-sumer-run nonprofit agency that provides a wide selectionof services to consumers and providers. It sponsorsregional conferences; offers training; creates research-based publications; works with the New York State Officeof Mental Health to bring about systems change; facili-tates the development of self-help groups; and providestechnical assistance, instruction, and guidance to mentalhealth professionals, consumers, families, and others onself-help, mutual support, and recovery. The six annualregional conferences alone draw 1,500 attendees per year.The program maintains a wide-ranging Web site and Web-based materials and has consulted nationally.

Regional Transportation District, Denver, CO.Developed in 2002 in response to a consent decree initi-ated by the Colorado Cross-Disability Coalition, thistraining program for bus drivers and other RegionalTransportation District employees focuses on all disabili-ties, not solely psychiatric disorders. The program con-

sists of slides, written narration, and music and is offeredby a Regional Transportation District human resourcesprofessional in collaboration with the disability coalition."This is an unusual but highly effective program. . . . Ihave been involved in disability rights issues and trainingsince 1987 and I have never seen a piece as good as this. . . . The focus is on transit, but the presentation is themost amazing disability awareness piece that I have everexperienced."

Exemplary Qualities. The panel members spent a gooddeal of time in discussion and analysis of the qualities thatled to their selection of the exemplars. The essential ques-tion was: What makes a program exemplary? The resultsare summarized below.

Principles. Clear articulation and foregrounding ofthe fundamental principles of the program or project wasparamount. Those principles that were of particularimportance to the panel were inclusion; empowerment;human and civil rights; recovery; choice; self-determina-tion; and respect for different philosophies and perspec-tives regarding psychiatric disorders, medication, treat-ment, and related issues. The principles make clear thatthe program's goal is not primarily recruiting for treat-ment but rather addressing the needs of community mem-bers.

Language. "One word can make such a difference,"said one panelist. Language conveys principles. Languagethat is respectful of difference, oriented to abilities andstrengths, person centered, easily understood, accurate,and evocative is a hallmark of exemplary approaches.

Power. Power includes the distribution of authorityin the program or project and the recognition thatinequities in power are central to discrimination andstigma. Consumer survivor- and person-centered organi-zations, as well as programs where authority is equallyshared between consumer survivors and others, indicatedto the panel that considerable power was being shared byconsumer survivors and others.

Tangible resources and specific issue focus.Housing, jobs, transportation, income, health care, andother tangible resources are real-world issues facedwidely by consumer survivors, and their absence con-tributes to and reflects discrimination. Likewise, neigh-borhood opposition to residential services and the passageor defeat of specific legislation are examples of specificissues addressed by exemplary programs. Making a realdifference in real people's lives is key.

Personal and interpersonal opportunities and con-texts. Creating ongoing contexts where consumer sur-vivors and others interact as equals, where consumer sur-vivors have valued roles, and where their narratives are asvalued as other "evidence" was highlighted by the panel.

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Schizophrenia Bulletin, Vol. 30, No. 3, 2004 S.E. Estroffet al.

"We are the evidence," relayed one panelist in endorsingnarrative-based practice.

Direct benefits for participants as well as audi-ence. Work on antistigma and antidiscrimination activi-ties should empower, heal, engage, and otherwise con-tribute to the pride and well-being of the participants.

Community connections and partnerships.Connections and embeddedness within the community—and coalitions and collaborations with local, State, andnational partners—increase impact, contribute vitality andstability, and otherwise enhance exemplary programs. Thegoals are for consumer survivors to be valued, skilled, andequal citizens via these projects.

Health promotion. Prevention and wellness are rec-ognized and promoted within outstanding programs.

Expression through humor and drama. Dramaand humor can express what is otherwise inexpressible ordifficult to convey and add crucial dimensions to the rep-resentation and understanding of the experiences of dis-crimination and stigma. Humor can temper the messagewhile still conveying it.

Reach, visibility, and impact. Both quality andquantity of reach, visibility, and impact are of value inexemplary programs. Programs in schools; training andconsultation with providers, political decision makers, andresearchers; and radio and television programs are exam-ples cited by the panel.

Innovation and growth. Ingenuity and creativity,vitality, longevity, and potential of the organization orprogram are hallmarks of exemplary programs. The panellooked for projects that embodied these qualities in vari-ous ways such as novel approaches that do not necessarily"lead with the illness," program growth and duration,plans for future actions, ability to adapt to changing cir-cumstances, and formation of coalitions across disabilityand other activist boundaries.

It is inevitable, and admittedly tautological, that thequalities identified above mark the exemplars.Nonetheless, these principles provide a potential workingfoundation for the development of new and the sustenanceof current discrimination and stigma reduction efforts.While not subjected to rigorous scientific assessment oftheir effectiveness, the programs that embody these quali-ties have met the important tests of enduring and prosper-ing over time and of earning the enthusiastic regard oftheir local communities.

There are few apparent noteworthy conceptual differ-ences between the exemplars and other nominees. Perhapsmost interesting are the operational differences betweenexemplary and other programs, but these are qualitative innature rather than of statistical significance. We brieflyreview these because so little is known about the opera-

tional sphere of stigma reduction in the community.Exemplary programs were more likely to have grown, andmore of them had been in existence for over 2 years thanthe other nominees. This may be taken as a measure oftheir impact, vitality, and connectedness to the commu-nity. Indeed, exemplars were more likely to be funded byand connected to local mental health authorities (36.1%vs. 25%) and the United Way (8.6% vs. 3.3%) than theother nominees.

Fewer exemplary programs than other nominees hadfamily members as participants (33.3% vs. 43.9%) but asmany involved health and health-related professionals.This may be due to the presence of 19 NAMI In Our OwnVoice programs in the other nominees' part of the sample.At the same time, fewer exemplary programs than othernominees reported consumers as participants (75% vs.84.4%). This may be due to their coalition building withother activist groups and their involvement in other-than-psychiatric-disorder issues as a means of integration andnormalization. Finally, the exemplars and other nomineesappear to be addressing somewhat different audiences.More exemplary programs had school and student audi-ences (45.5% vs. 27.8%), and more other nominees werepresenting to church or religious groups, service groups,and the community at large. This suggests again that theexemplars were engaged in somewhat more targeted andfocused activities.

LimitationsThe study reported here has limitations that necessarilytemper the generalizability of the findings. The work waslimited in scope, time, and resources because of the natureof the project funding. The efficacy of the programs thatwere nominated was not assessed with standardizedresearch instruments. The response rate was lower thanexpected, and we undoubtedly undersampled consumersurvivor-only programs, along with others that preferredterminology other than "stigma." The deliberately inductiveapproach was appropriate for a preliminary effort to gaugelocal assessments of excellence in discrimination andstigma reduction programs but did not provide the opportu-nity to empirically test the derived exemplary qualities inrelation to efficacy. A different consensus panel might haveselected diiferent exemplars, but in view of the similaritiesamong nominees and the agreement among the panel, it isdoubtful that the findings would be altered significantly.

ConclusionsCorrigan and Perm (1999) identified three approaches toaltering stigmatizing views of severe mental illness: edu-

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cation, contact, and confrontation or protest. Each of theseis in evidence, in varying combinations, in the sample.Arguably, the programs in the sample support experimen-tal research findings to the extent that contact and educa-tion, particularly ongoing contact between and amongequal partners with actual decisional authority, seem tohave the desired impact. The direct benefits to consumersurvivors of the organization of, operation of, and partici-pation in these efforts can hardly be overestimated. Oneof the key issues is how to spread the kinds of relation-ships, opportunities for accomplishment, and flow of heal-ing experiences that happen in these projects to thebroader landscape of daily life.

In this preliminary sampling of the nature, extent, andqualities of antidiscrimination and antistigma programsnationally, the most impressive observation is that note-worthy efforts are taking place across the country. Thereis demonstrable consensus, illustrated by the many con-ceptual and operational elements held in common, amongthe programs we reviewed. The exemplars have similarfoci and qualities: training for and by consumer survivors;dramatic performances; programs for and by children andadolescents; various means of challenging popular viewsof people with psychiatric disorders; activities explicitlydirected at countering discrimination in employment,housing, and community life; connections to a variety ofcommunity and mental health agencies; and engagementin broader disability coalitions. These programs endorseand practice empowerment, assertion of authority, andrisk taking by the consumer survivor participants, andthus perhaps most important, represent a direct benefit tothe participants through their engagement in the enter-prise. A wide range of people, with diverse perspectives,using a variety of means and methods, are workingtogether toward increasing the life opportunities and well-being of people who have a diagnosis of psychiatric disor-ders.

The extent to which consumer survivors are centralto this enterprise, and the extent to which empower-ment, equity, and self-determination are held in com-mon, are also apparent. Emerging as intriguing activi-ties among the nominees are consulting andtraining—interventions that combine education withextended contact. This deserves attention because it sig-nifies also the elements of equity and empowerment, ofimpact, and of potential for systems change as con-sumer survivors function in the roles of experts, advi-sors, and influences on decision-making processes andin treatment or services settings. The willingness ofincreasing numbers of mental health systems andproviders to engage with consumer survivors in theserelationships signals significant positive shifts in atti-

tudes and perspectives. In the same vein, State and localmental health agencies are devoting resources and sup-port to these groups and individuals to a gratifying andpromising extent. The current fiscal disasters in mostStates give cause for grave concern about the futureavailability of resources to continue this work.

There are differences in philosophies, values, andprinciples within this movement. The vocabularies of edu-cation for acceptance and understanding sometimes standat odds with the language of protest, rights claims, andtargeted change. Adapting and implementing the findingsfrom controlled, empirical research on stigma reductionmay prove problematic if implemented without considera-tion of this powerful context and these deeply held views.At the same time, further investigation into the means andmechanisms for altering prejudice and discriminationtoward people with psychiatric diagnoses should not belimited by political and ideological divides.

Over the centuries, the predominant theme of effortsto reduce psychiatric stigma can be summarized as fol-lows:

1. Humanitarian, human rights, and civil rights

2. Education

3. Proximity: increase contact, hospital closure, commu-nity treatment

4. Legislation: ADA, right to treatment, forced treatment

5. Medicalization, brain disease, chemical imbalance

6. Empowerment, recognition, and self-advocacy

The programs we reviewed employ many of theseapproaches, in various combinations. On the whole, wedetected a shift in emphasis from stigma to discrimina-tion—from a focus on stigma associated with illness perse toward the vocabulary and perspectives of discrimina-tion, including an emphasis on human and civil rights andempowerment and self-advocacy. The challenges for fur-ther progress are many, but apparently there are alreadyvalued local efforts across the nation. Learning from andbuilding upon these foundations should enhance futureresearch and practice in stigma and discrimination reduc-tion. Community collaboration, diversity of perspectives,and enduring engagement with citizens and health profes-sionals seem to be keys to success and represent anemerging era of new approaches.

The observations of one consumer survivor panelistencapsulate the changes in approach we observed:

I think that presentations, descriptions, will havea limited effect on this issue [stigma]. That isbecause I believe the effects of speeches, presen-

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tations are small, and at best have only a limitedpurpose. I do not believe that most speeches, pre-sentations, et cetera have more than a brief,ephemeral effect. . . . A speech or presentationwill not succeed in changing long-standing andcomfortable patterns of behavior.

They can speak and spark new ideas that theaudience can go out and test in the community.Speeches, presentations, and other "nonnormalevents" can shape a mind, but in "normal" life, thecommunity is where the shaping takes a more per-manent form. In this case, the reality and the imageare the same, and the best way to improve a group'simage is to improve the reality of the group's situa-tion. Thus, the best places for an anti-stigma cam-paign to work would be in the community itself, onthe community. Working on the image, and work-ing on the tangible issues are in many ways work-ing on the same thing. However, just working onone or the other does not yield the results of a com-bined approach. The anti-stigma movement, in myopinion, needs to get real (emphasis in original).

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Acknowledgments

This research was supported by National Institute ofMental Health PSC #56-600-1393. The authors gratefullyacknowledge the significant contributions of consensus

panelists—Sylvia Caras, Ph.D., Founder, www.people-who.org; Susie Deter, Executive Director, ThresholdClubhouse, Durham, NC; Virginia Dickie, Ph.D.,Associate Professor, Medical Allied Health, University ofNorth Carolina at Chapel Hill; Steven Haebig, member,Club Nova, Carrboro, NC; Martha Hodge, Ph.D., consul-tant; David Oaks, MindFreedom Support CoalitionInternational, Eugene, OR; and Wilma Townsend, consul-tant, TAC, Inc., Boston, MA—as well as Zachary Rosnerand Emeline Otey.

The Authors

Sue E. Estroff, Ph.D., is Professor, Department of SocialMedicine, and Adjunct Professor, Departments ofPsychiatry and Anthropology, University of NorthCarolina at Chapel Hill, Chapel Hill, NC. David L. Penn,Ph.D., is Associate Professor, Department of Psychology,University of North Carolina at Chapel Hill. Julie R.Toporek, M.S., is Research Assistant, Department ofSocial Medicine, University of North Carolina at ChapelHill.

Appendix. Other Exemplary Programs

Advocacy Initiative Network of Maine, MaineLeadership Academy, Bangor, ME. One panel memberdescribed this as "a consumer-led, consumer-driven orga-nization dedicated to strengthening consumers' voice inMaine through education, training, and support." Offeringclearly articulated values and activities, the programreceives funding from the State mental health authorityand the Center for Mental Health Services.

Anti-Discrimination Projects of the Mental HealthAssociation of New York State, Community MentalHealth Promotion Project, Albany, NY. A wide range ofinitiatives, services, and resources based on local teamsand local leaders and statewide coordination are involved.An extensive Web site describes programs that includeParents with Psychiatric Disabilities, education for chil-dren, statewide advocacy, statewide training and educa-tion, consumer and business outreach, and a clearing-house for information and resources. It is funded by theCenter for Mental Health Services, a pharmaceutical com-pany, the State mental health authority, the State mentalhealth association, and other stakeholders and partners.

Bodywalk, Jefferson City, MO. An interactive activityfor schoolchildren involves travel through a replica of thehuman body, followed by group discussion of mind-bodyinteractions, and emotions and how to manage them.

Additional information and education for teachers andstudents about various psychiatric and behavioral disor-ders and resources are provided. It is funded by theGovernor's Council on Physical Fitness and Health, theMissouri Coalition of Mental Health Providers, and theUniversity of Missouri Extension.

Contra Costa Campaign to Address Discriminationand Stigma/California Campaign to AddressDiscrimination and Stigma, Contra Costa, CA.Activities include collaboration with local and Statestakeholder groups, speakers bureau, media watch, visualand interactive educational presentations, teaching at localuniversities, and working with faith communities.Funding comes from the local mental health authority andfrom member organizations.

GSM Players, Keene, NH. This is a drama troupe ofregional renown that also operates a crisis respite programas an alternative to hospitalization. Audiences includechurches, schools, and universities nearby. It is funded bythe State mental health authority and donations.

Look at My ©isAbility, Birmingham, AL. This is astatewide campaign that includes I Can Vote, a voter reg-istration initiative for people with psychiatric disorders.Billboards statewide, a poster campaign, and radio public

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service and education spots are included. It is funded byAlabama NAMI and the State of Alabama.

Mental Health Forum for Kids by Kids About Kids,Jacksonville, FL. This collaborative effort of the MentalHealth Association of Northeast Florida and a localteacher also includes local law enforcement and univer-sity faculty. Students engage in research on various psy-chiatric disorders and present "grand rounds" to eachother and professionals. Other participants offer lecturesand educational material. It is funded by the United Wayand private donations.

Mental Illness: It's Not What You Think, Columbia, SC.Activities include media campaigns, speakers bureau, art ofrecovery shows on-line and on the ground, media watch, anextensive Web site, and teaching in college journalism pro-grams. It was developed and initially funded by the SouthCarolina Department of Mental Health.

Open Minds, Open Doors, Mental Health Associationin Pennsylvania and the Pennsylvania Mental HealthConsumers Association in collaboration with 12 otherstakeholder groups, Philadelphia, PA. Various activities

include publication of an employer guide, speakersbureau, and video and slide presentations. Focusing oneducation, tolerance, and legal rights, it receives fundingfrom the State mental health authority.

Quad City Stigma Busters, Davenport, IA. Thegroup uses improvisational theater to educate audi-ences about people with mental illness. Developed withthe guidance and training of the Central Iowa Players(described above), it performs at schools, communityagencies, and professional societies, and at nationalconferences. It completed an effectiveness study withhigh school and college students. Donations, the localmental health agency, and the local NAMI provide thefunding.

Welcome House Stigma Fighter Players, Shelbyville,KY. Actors in this drama troupe from a psychosocialrehabilitation program use role-play, creative art, andstructured group exercises to entertain and educate. Theyappear statewide, nationally, and internationally and havereceived numerous awards from State advocacy organiza-tions. The group is funded by the local mental healthauthority and donations.

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