Excerpt from a plenary address by Judith A.Cook, Ph.D., Professor and Director, University of Illinois at Chicago, National Research and Training Center on Psychiatric Disability (cook@ripco.com), at a conference on Disability, Sexuality, and Culture:  Societal and Experiential Perspectives on Multiple Identities, San Francisco State University, San Francisco, CA, March 17-18, 2000.

 

Who are people with psychiatric disabilities?

·         People who have been labeled with a severe mental disorder from the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV).

·         People with impairments (which some call symptoms) such as psychosis (being out of touch with reality), obsessions (ideas that one cannot stop thinking about), compulsions (behaviors one can't stop performing), depression (feeling sad most of the time on most days), and cognitive processing difficulties (inability to concentrate or think clearly).

·         People with disabilities or levels of impairment which interfere with their functioning in adult roles, creating an inability to live independently, maintain employment, low educational attainment, and difficulty relating to others.

·         People with strengths such as being more accepting of difference and tolerating alternative viewpoints, being more self-aware, and having a survivor mentality.

·         People with alternative viewpoints such as a sensitivity to oppression and desire not to oppress others, and a tendency to challenge "accepted reality."

 

Where are they in the disability rights movement?

·         They are latecomers to disability rights activism (with a few notable exceptions such as Judi Chamberlin and Howie the Harp), being out in the community only since their deinstitutionalization from hospitals beginning in the 1950s.

·         They've experienced minimal self-determination since our society hasn't provided them with adequate mental health services or choices in how to use them when available.

·         They are seeking acceptance for peer support and self-help among policy makers and mental health/rehabilitation professionals

·         They are constructing representations of "recovery" versus cure, where recovery involves rebuilding one's life after diagnosis to an existence with dignity and self-determination.  Expressing sexuality and establishing intimacy are part of recovery for consumers.

·         They lack an independent living movement unlike the physical disability community, because of perceptions that they should not receive housing assistance and support.

·         They are trying to organize politically and present a united front while allowing for diversity and acceptance of multiple viewpoints in their movement.

 

How does society view and treat people with mental illness?

·         They are deprived of their civil rights in the name of treatment and pubic safety in both institutional and, increasingly, in community settings.

·         They are stigmatized and feared, partly because of cultural representations of their "dangerousness" in the media.

·         Their treatment often includes coercion involving forced restraint, forced seclusion, chemical restraint, emotional intimidation, threats, and bullying.

·         They are objects of socially-acceptable humor, scorn, and humiliation.

 

What about their sexuality?

·         Many are sexually active; studies show that 33% to 75% report being active sexually.

·         Most do not practice safer sex; studies show that 66% to 75% do not use condoms.

·         Many have difficulty using contraception for reasons that are economic, interpersonal, and situational.

·         They enjoy sex a lot, although somewhat less than nondisabled peers in some studies.

·         They consider intimacy and sexuality an important life goal and human right.

·         Many repress their sexuality, worry about its "normalcy," and internalize societal disapproval of their sexuality.

 

Sexuality and Intimacy:  Mental Health Consumer Viewpoints

·         51% said they lacked a satisfying sex life

·         47% said they lacked a satisfying social life

·         40% said they lacked warmth and intimacy

·         over 50% of board-and-care residents reported lacking privacy in their everyday lives

·         50% felt that people with serious mental health problems were incapable of having satisfying intimate relationships

(from a survey of 325 mental health consumers conducted by peer researchers in the California Department of Mental Health led by Dr. Jean Campbell in 1990)

 

Barriers to Sexual Expression Among Mental Health Consumers

·         Lack of privacy in many residential settings

·         Histories of abuse & trauma

·         Lack of self-confidence & esteem that impairs their ability for intimacy

·         Psychiatric medication side-effects can diminish sexual performance & desire

·         Certain symptoms (paranoia, withdrawal) inhibit ability to form relationships

·         Lack of service and supports for expressing sexuality

 

Difficulties Using Contraception and Safer Sex

·         Lack of knowledge & information

·         Most effective contraception not affordable for those on limited incomes

·         Lack of privacy may lead to hurried, unprepared sexual activity

·         Lack of support from providers & family for using contraception & safer sex

·         Skills needed for negotiating safer sex (persuasion, limit-setting) are difficult for everyone, but especially for people with emotional difficulties

 

Issues for Women Mental Health Consumers

·         Rates of childhood and adult physical, sexual, and emotional abuse are high.

·         Fear of unwanted pregnancy for women who have sex with men

·         Childrearing responsibilities facing single moms may inhibit privacy & opportunity

·         Documented lack of women's healthcare (gynecological, breast) for women consumers

·         Some medications may inhibit desire

·         Societal repression of all women's sexuality affects consumers too

 

Issues for HIV-Positive Mental Health Consumers

·         Lack of coordination between the mental health and HIV/AIDS care systems.

·         Disclosure regarding multiple statuses (person with HIV/AIDS, mental health consumer)

·         Prevention services needed for sexually active HIV+ consumers

·         Need for peer support and peer counseling

·         Need to address any co-occurring substance abuse issues

·         Need support for adherence to highly active antiretroviral therapies for HIV

·         Homophobia in mental health services and mental illness stigma in HIV field

 

What can the community do?

·         The disability community can support the right to self-determination among consumers.

·         Mental illness stigma reduction needs to happen in all professional fields

·         Consumers need empowering environments and care providers.

·         Affordable contraception and safer sex materials should be made available.

·         The consumer community can incorporate sexual expression and intimacy goals into its movement agenda.

·         The larger community can educate itself about how to stop stigma against mental illness.