Democracy, Diversity,

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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 MissouriColumbia School of
  Medicine

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Presentation Outline

• impact of labeling people
• role of the media
• findings of consumer studies
• conclusion

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Impact of labeling peopleA 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.

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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.

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Impact of labeling peopleA 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,

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Impact of labeling peopleA 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.

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Impact of labeling peopleA 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.

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Impact of labeling peopleA 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 personhood or dignity of being is
  essential to our mental health.

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Impact of labeling peopleA 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.

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Impact of labeling peopleA 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.

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Impact of labeling peopleA 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.

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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.

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Impact of labeling peopleA 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.

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Role of the Media Public images of people with
mental illness

• If you tell them about your history and apply
  for a job they wont give you a job. If you tell
  the landlord about it when youre applying for a
  room or an apartment they wont give you that
  apartment. They generally avoid you once they
  find out.
• interview, The Well-Being Project (1989)

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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.

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Role of the MediaPresumed 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 -- theyre too passive. They
  wouldnt even hurt a fly. I know I wouldnt hurt
  a fly.
• Leonard Kapland (The Well-Being Project, 1989)

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Role of the MediaPresumed 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.

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Role of the mediaPresumed violent

• Mass media both mirrors reality and participates
  in the production of public attitudes.

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Role of the mediaPresumed 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.

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Findings of Consumer Studies

• The Well-Being Project (1986-1989)
• National Alliance for the Mentally Ill (1996)

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Findings of Consumer StudiesTowards a
Consumer/Survivor Research Agenda

• The Well-Being Project
• Mental Health Clients Speak for Themselves
• (1986-1989)

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• 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 consumers
  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.

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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

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Research Question

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

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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

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• Triangulation
• clients (N331)
• family members (N53)
• mental health professionals (N150)
• Convenient sample
• Consumer surveyors
• face-to-face interviews
• self-administered interviews (mail)
• group interviews

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Findings

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

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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.

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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 dont 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)

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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.

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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.

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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.

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NAMI Stigma Survey

• National Alliance for the Mentally Ill (1996)
• Otto Wahl, Ph.D., Principal Investigator
• n1300

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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.

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Findings

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

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Conclusion Capturing the Consumer Perspective

• Its going to take years for people to respond
  to what were trying to do. People dont believe
  us, that were 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)

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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.

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Conclusion

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

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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.