1. Democracy, Diversity, & Disability14th Annual Meeting of Society for Disability StudiesWinnipeg, MBJune 20--23, 2001 A Loneliness that Humbles the Spirit Jean Campbell, Ph.D. Director, Program in Consumer Studies and Training Missouri Institute of Mental Health 5400 Arsenal Street, St. Louis, MO 63139 University of Missouri—Columbia School of Medicine

2. Presentation Outline • impact of labeling people • role of the media • findings of consumer studies • conclusion

3. Impact of labeling people:A loneliness that humbles the spirit Social support of people with mental illness is critical to their reintegration into the community, and their efforts towards recovery.

4. Impact of labeling people: A loneliness that humbles the spirit • The lives of consumers are set apart by angry or indifferent communities that reject, shun, and sometimes attack them.

5. Impact of labeling people:A loneliness that humbles the spirit • False but pervasive stereotypes of consumers as dangerous, unpredictable, incompetent individuals who do not know what is in their own best interests persist in our popular culture,

6. Impact of labeling people:A loneliness that humbles the spirit • This social isolation has profound effects on the well-being of mental health consumers by impoverishing their sense of worth and dignity.

7. Impact of labeling people:A loneliness that humbles the spirit • By looking at the communities that fear and reject mental health consumers, • and the peer communities that provide acceptance and understanding, • we begin to appreciate the profound link between the rehabilitation of mental health consumers, and their validation as social beings.

8. Impact of labeling people:A loneliness that humbles the spirit • It is within a context of social relationships that we can build an identity acceptable to ourselves and acceptable to others. • This sense of personhoodor dignity of being is essential to our mental health.

9. Impact of labeling people:A loneliness that humbles the spirit • Stigma and prejudice undermine social connectedness, • and the potential for human companionship-- It is our attitudes and behaviors towards each other that determine our opportunities • to laugh • to touch another • and to dream.

10. Impact of labeling people:A loneliness that humbles the spirit • In order for people with mental illness to realize fragile visions of recovery-- as a society we must seek ways to repair the damage to people assaulted by fearful and uncaring communities.

11. Impact of labeling people:A loneliness that humbles the spirit • Individually, we must each bear witness to a shared culpability for the production of stereotypy, and a shared responsibility to make things better.

12. Impact of labeling people: A loneliness that humbles the spirit • Stigma and prejudice are the underbelly of social support, polluting the public and private spaces that people occupy in everyday life-- home neighborhood school workplace hospital and clinic.

13. Impact of labeling people:A loneliness that humbles the spirit • It is in the places that people habit and recreate, • that prejudice intrudes to corrupt relationships of trust, acceptance, and respect.

14. Role of the Media :Public images of people with mental illness: If you tell them about your history and apply for a job they won’t give you a job. If you tell the landlord about it when you’re applying for a room or an apartment they won’t give you that apartment. They generally avoid you once they find out. interview, The Well-Being Project (1989)

15. Role of the Media :Public images of people with mental illness: • In general, this society is intolerant of behaviors that do not fit into the mainstream. • Communities seem to view mental health clients with both caring and rejection.

17. Role of the Media:Presumed violent Some clients are dangerous, but very few of them. Fewer than society would think, because most mental health clients have exactly the opposite problem -- they’re too passive. They wouldn’t even hurt a fly. I know I wouldn’t hurt a fly. • Leonard Kapland (The Well-Being Project, 1989)

18. Role of the Media:Presumed violent • Instead of fulfilling the role to inform and educate, the mass media imagery pulls the public image away from the findings of research about people with mental illness in the direction of traditional prejudices.

19. Role of the media:Presumed violent • Mass media both mirrors reality and participates in the production of public attitudes.

20. Role of the media:Presumed violent • A presumption of violence inevitably isolates an individual from peers and from a community of natural supports. A police officer may more readily shoot a person who has a mental illness; a mother may refuse to allow a mental health consumer to babysit her child. When a consumer stands in a group where his/her diagnosis is known, there is sometimes an almost imperceptible leaning away from that person.

21. Findings of Consumer Studies • The Well-Being Project (1986-1989) • National Alliance for the Mentally Ill (1996)

22. Findings of Consumer Studies:Towards a Consumer/Survivor Research Agenda The Well-Being Project: Mental Health Clients Speak for Themselves (1986-1989)

23. In 1979 Prager and Tanaka reported to the Ohio Department of Mental Health on the results of involving mental health consumers in evaluation. They concluded:“Representing the consumer’s perspective on the meaning of mental illness and the correlates of ‘getting better,’ the process of client involvement in evaluation design and implementation is not only realistic and feasible; it is, we feel, a professional necessity whose time is overdue.”

24. A Landmark Study • Funded by the California Department of Mental Health Office of Prevention • First consumer research project: conducted by the California Network of Mental Health Clients • Jean Campbell, Principal Investigator • Ron Schraiber, Co-Investigator

25. Research Question • What promotes or deters the well-being of adults with severe and persistent mental illness in California?

26. Study Design • Developed, Administered and Analyzed by Mental Health Consumers • State-wide Survey • Qualitative and Quantitative Methods • focus groups to develop items • open-ended questions included • in-depth interviews • multiple choice, likert scaled items

27. Triangulation: clients (N=331) family members (N=53) mental health professionals (N=150) Convenient sample Consumer surveyors face-to-face interviews self-administered interviews (mail) group interviews

28. Findings • Over half of the clients surveyed indicated that they had experienced discrimination for having a psychiatric disability.

29. Findings • More than one-third of clients surveyed said that society is “seldom” tolerant of people who are different or thought to be different. • 30% of the respondents felt that other people “seldom” or “never” accept their feelings of sorrow, despair, or anger.

30. Findings • 41% of mental health clients surveyed felt that “all” or “most of the time” people treated them differently when they found out they have received mental health services. • like they are violent (16%) • like a child (21%) • like they don’t know what is in their own best interest (31%) • like they are in capable of caring for children (20%) • like they are incapable of holding a job (33%)

31. Findings • 47% of the clients surveyed have been told at least “sometimes” that they are “mentally ill” when they disagreed with the opinions of advice of mental health professionals.

32. Findings • Respondents indicated that they did not want to be called “the mental ill,” a “schizophrenic,” a “mental patient,” and other labels related to psychopathology. • More than one-third wrote in their own name, “human-being,” or “normal person” when asked what specific term they would prefer to be called.

33. Findings • 75% of the clients surveyed said that “seldom” or “never” does the media--tv, radio, movies, or newspapers--portray mental health clients in a fair, accurate, humane manner.

34. NAMI Stigma Survey • National Alliance for the Mentally Ill (1996) • Otto Wahl, Ph.D., Principal Investigator • n=1300

35. Findings • One in three individuals with severe mental illness reported that they had been turned down for a job for which they were qualified because of a psychiatric label.

36. Findings • Seven out of ten respondents reported that they had been treated as less competent by others when their illness became known.

37. Conclusion: Capturing the Consumer Perspective It’s going to take years for people to respond to what we’re trying to do. People don’t believe us, that we’re capable of doing anything. They consider us irresponsible, incompetent, crazy, insane. But the trouble is, self help works. John Price (The Well-Being Project, 1989)

38. Conclusion • The greatest pain for people that have been psychiatrically labeled is that there is no mirror in the media to reflect the human face of the mental health consumer. • We are all starved for images of ourselves, for identity and for aids to communicate the condition of our lives and the good in them.

39. Conclusion • Dignity requires active participation in defining and directing one’s life. Most importantly, mental health consumers must speak for themselves as subjects struggling to define and shape their world.

40. Conclusion • It is at the level of people communicating with each other that social support has the greatest potential for becoming incorporated into and humanizing the public and private spaces of society.