For most of us consumer/survivor/expatients (c/s/x’s) our central issues are discrimination, helplessness, and isolation. We need to overcome discrimination to gain access to the arenas of policy formation. We need to overcome our powerlessness to consistently participate in the crafting of new policies. We need to keep up our courage, and overcome the isolation and conflicts between ourselves and other disadvantaged groups in society so we can trust each other and work together. These are the elements of social empowerment which are as important as individual empowerment. We need to break the image that people with psychiatric disabilities cannot contribute. That attitude has created more of a barrier to people getting or keeping a job than welfare.
Coalition-building is an essential means of overcoming the barriers of discrimination, powerlessness, and isolation. During the Health Care Reform debate, the NEC built connections with leaders in the larger disability movement. We built on our commonalities. Our unity is built on the similar philosophies of the c/s/x movement and the Independent Living Movement. The IL Movement, like the c/s/x’s, emphasizes consumer choice and control. Now is an especially important time to build more coalitions both within our movement, and with other groups with similar aims. I look forward to Alternatives ’95 (see article in this issue) as an excellent opportunity to network and begin building coalitions within our movement. Threats towards fair and affordable housing, the ADA, SSI, and Medicaid should unite all people with disabilities as well as sympathetic professionals and families. Two important coalitions are forming. One is being organized by Justin Dart and Pat Wright and is called Justice for All. The other is being organized by Chris Kyonagi of the Bazelon Center and Becky Ogle of Consortium of Citizens with Disabilities.
Media is a powerful force in shaping of social views. We try to overcome discrimination by publicizing positive role models of people who were labeled mentally ill and yet still have contributed to society. We have tried to get as much unbiased coverage of people with psychiatric disabilities (that may be an oxymoron) by the media as possible. After 6 months we finally got a lead article about the Center in the Boston Globe. We received several hundred inquires after the article, most of which emphasized how encouraged they were that we were disclosing and promoting the interests of people with psychiatric disabilities. We are disappointed though, that the editors added critical comments by 3 different psychiatrists, one of whom refused to be identified. One said I and Pat Deegan did not represent people with severe psychiatric disabilities. Who then can? Furthermore, a photo of me was captioned that I was misdiagnosed (another way of invalidating my testimony). This invalidation of our leaders does not occur as much for people who have recovered from the disabling effects of physical impairments.
An important way to overcome powerlessness is through participation as a c/s/x representative on boards. Federal and state legislation have mandated c/s/x involvement in mental health planning boards. Seek out positions on advisory boards for policy, training, quality improvement, and research. Once you have gained access, you will make important contacts which can lead to changes. You can also then bring in others. I and several c/s/x’s have participated in a state-wide Massachusetts training council which has started to require that psychiatric residents receive training in empowerment and recovery by people in recovery from psychiatric disabilities. Every facility should have a human rights committee. Ensure that they do, join, and participate. Each state has a protection and advocacy organization. These P and A’s unfortunately have been run more by lawyers than c/s/x’s and have been more concerned with procedural rather than substantive legal issues. They have focused more on how people are committed than on whether involuntary treatment should occur. I was encouraged to learn recently from the director of NAPAS (National Advocacy and Protection System) Curt Decker, that they have added c/s/x’s to their board and are seeking our input.
Get out and do as much public speaking as possible. Through doing so you can change attitudes, raise consciousness and make contact. After giving a talk at a state-wide managed care conference I and another c/s/x made contact with a state official who has enabled us to help set up a consumer council for the corporation which is now managing Massachusetts Medicaid. Managed care is another area we need to get involved in.
Self-help and consumer-run social clubs are important ways of overcoming the isolation which many people with psychiatric disabilities experience. They are low-cost alternatives to the professionally-based system. They also foster independence and responsibility instead of dependence and lack of responsibility. Self-help groups lead to many of the changes which are occurring in the mental health system, such as supported housing, clubhouses, etc. In fact, Fountain House was started by a self-help group called We Are Not Alone (WANA). We need to remind those organizations of their roots and keep them accountable to their membership.
Whatever your best means of expression, develop and utilize it. For some it is writing, for others art, film, theatre, or Internet. These are all important channels for getting out our message that we are full, capable human beings with a voice which needs to be heard and taken seriously.