ORGANIZING THE NEST By Evan Kaeser CUCKOO’S en years ago I had a severe mental “ break.” I became a mental health services consumer. I have been diagnosed, misdiagnosed and rediagnosed. I have spent time in hospitals on the East and West coasts, in public and private: institutions, on the civil and forensic side of the law. Until recently, it seemed my objections to treatment issues were only isolated cries of despair Remember President Reagan cracking that he would not want to pick on the “ little invalid” when it was suggested that Dukakis sought counseling during his early political career. Whether we mentals choose to call ourselves consumers, ex-patients, clients or survivors, we live in a world of social stigma every day. In 1986 Representative Henry Waxman (D-CA) and Senator Lowell Weiker (R-CT) co-sponsored the Protection and Advocacy Bill (P&A) in the U.S. Congress. The upshot of this bill placed the mentally ill under the same disadvantaged-disabled population umbrella as the physically handicapped and the mentally retarded. For the first time now, the mentally ill person is entitled to affirmative action in housing, employment, treatment, etc. P&A affords a budget for organizing mental health consumers around the country. With P&A, mental health consumers have been accorded legal existence. It’s our civil rights bill. We can now demand rights the rest of the population takes for granted. In the wake of P&A, federal monies have been doled out to consumer groups for about three years. Most of the federal assistance has been given to the East Coast—what with a larger and more politically sophisticated mental population. Last July, Mind Empowered Inc. (MEI) of Oregon announced the receipt of a three- year, $425,000 grant from the National Institute for Mental Health (NIMH)—the funding arm of the Federal Alcohol Drug Abuse and Mental Health Division. These local NIMH grant monies are earmarked for the provision of direct services; serving transitional living needs in the streets and hospitals. Housing and the needs of the homeless mentally ill are key issues to be addressed by Oregon consumers for Oregon consumers, making it a true alternative to the “ expert” provision of services. Jerry Wang, MEI president says, “We are expanding the role of the consumer in the present system.” Summer is fine in Salt Lake City- . . not too cool or hot—lots of crisp blue sky. The first week of August ’88 saw 800 mental health consumers come together in the Mormon capital of the World from around the nation for the 4th annual convention of organized wackos. Called Alternative ’88, this convention seemed almost like any other. Surprising, not all the politics in Utah are as conservative as Orin Hatch’s. On the eve of the convention, 200-300 coven- tioneers staged an anti-stigma demonstration in front of the Utah state capital. The issue was strong, the press was there—a few politicians came on the stump. Their support, though patronizing, was welcomed by all. After speeches and testimonials came movement songs of the '60s. Jeanie Matulis, a Bay Area law student and consumer, led us in “This Land Is Your Land” and “ May The Circle Be Unbroken.” The short demonstration climaxed with a candlelight ceremony before buses returned people to their quarters on the University of Utah campus. There are essentially two national mental health consumer organizations: The National Association of Mental Patients (NAMP) and The National Mental Health Consumer’s Association (NMHCA). As might be expected, some issues divide and while others unite the two. The general philosophy of consumers helping consumers is a, shared consensus. Organizational principles, opinions on the acceptibility of some funding sources, and their relative positions on the issue of enforced treatment " keep them apart. Both groups were strongly represented at the convention. “In New York, if you can wear a three- piece suit, no one cares how crazy you are. It’s the combination of poverty and mental illness that scares people.” Illustration by John Callahan I believe lots of therapists feel threatened by this movement. They have invested a lot of time, money and years in becoming the expert.” In fiscal year 1987, the Federal government spent approximately $350 per diagnosed patient on cancer research and only $15 per patient on schizophrenic research. Many schizophrenic patients suffering the side effects of Tardive Dysken- esia (TD—a direct result of medications used to control schizophrenic symptoms). TD is experienced as highly unpleasant, unsightly, usually irreversible • involuntary muscle spasms of the face and other parts of the body. Little research has been done on this symptom, which affects millions of Americans. At the convention, TD was called a top priority. The Alternatives ’88 conference had workshops focusing on alternatives to hospitalization. Drop-in centers and peer counseling, as in the AA, the AIDS and Hospice movements, hold hope for more understanding. A consumer advocate from Tallahassee, Florida, Michael T. Wilson, says, “Just speaking out, and finding through growing awareness that we have a role to play in treatment issues, is helpful.” Hazel Gay, a Portland mother, former teacher of the deaf and the author of a yet unpublished manuscript about her experiences with mental illness talked of the mental health consumer movement. “ I believe lots of therapists feel threatened by this movement. They have invested a lot of time, money and years in becoming the expert.” In Utah, Susan, a young, exBennington student, poet and manic- depressive woman from Seattle, told me of her experience with her parents. “ Their first response to my manic episodes is mild shock. Their second response is to get me locked up as soon as possible. And what do I get? I get no care when I’m locked up. I may get stabilized on medication, but I get no care. I could Clinton St. Quarterly—Fall/Winter 1988 31
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