Invisible in Woodstock by Sally Clay
One seldom hears about people who have recovered from mental illness, and other ex-patients are always hard to find. I myself was trapped in a cycle of psychosis and institutionalization for over 20 years. Like most mental patients, I received psychiatric treatment that was worse than the disease, and even when I was not locked behind steel doors, my life was a deadend. My social status hit rock bottom many times--I lost my education, jobs, friends, family, husband, and two children. Two years' of memory were wiped out by 30 shock treatments. Psychiatrists and family alike told me that unless I took my meds I could expect to be sick for the rest of my life. I was handed a prescription for a kind of living death and was expected to accept it without objection.
Fortunately, I am a objector. And because my spiritual and political background taught me to believe that there is value in every individual, I never completely lost a sense of personal worth, a faith in myself and others that most mental patients have lost. I did not buy the verdict that I was mentally diseased, that genetically and chemically I was a "bad seed." More than that, I recognized from my own experiences that unusual mental states--including the kind labeled psychosis--can be spiritual events. To abuse, trivialize, or repress such states damages rather than heals an individual, and in the end it diminishes the spirit of a people. Unfortunately, neither the priests nor the people in my religious tradition agreed with me, and I could find no way to integrate my particular vision within available institutions.
I first came to Woodstock, New York, in 1978 to visit Karma Triyana Dharmachakra (KTD) and to talk with the lamas there. Before that visit I had begun to study Tibetan Buddhism. The texts that I read presented a precise understanding of the mind and how to work with it without abusing it. The mental processes described were both pleasant and unpleasant, and they resembled in uncanny detail some of the experiences that had in my case been labeled "mental illness." With trepidation, I spoke with Khenpo Karthar Rinpoche about the spiritual content of my experiences, and, to my astonishment, he advised me that if this were the case, then I should return to the community and apply what I had learned to help other people.
I returned to Maine and continued to study and practice the Dharma, and within three years my life began to turn around. I still found myself dragged off to mental hospitals. I still behaved very badly when I was "manic," and my personal life and employment prospects were no better than they had been before. But one day when just released from another state institution, I took inventory of my life. With a sense of stark realism I found that I had only one working asset. It was always easy for me to make friends with my fellow patients on the mental ward. I knew how help other people struggling with mental affliction, or at least how to cheer them up.
Remembering what Khenpo Rinpoche had said, I resolved to work for the benefit of other psychiatrically labeled persons. I volunteered for the Alliance for the Mentally Ill, a family group, and helped them start a psychosocial center in Portland, Maine. With their support I organized an advocacy and self-help group called the Portland Coalition for the Psychiatrically Labeled.
To everybody's surprise, mine most of all, the Portland Coalition was a great success. From the beginning we were entirely independent of doctors, agencies, and institutions. Starting with a march against the largest private hospital in Maine, the PCPL attracted immediate public support and established an ongoing dialogue with staff at the institution we had demonstrated against. Starting with advocacy for the rights of our own members, we eventually established an advocacy program for all patients in local private hospitals and in the two state mental institutions. We sat on innumerable government committees and task forces, including one that wrote Maine's first regulations for patient rights, and we lobbied for legislation for housing and better programs for psychiatrically labeled persons.
We published a book of poetry by our members, as well as a quarterly newsmagazine with a nationwide mailing list. I produced a slide presentation on stigma, and PCPL members presented it to groups around the state and the nation. We often spoke in public and became an essential component in any conference or project put on by the Bureau of Mental Health.
In 1985 we opened our first office and drop-in center and developed a program in which PCPL members were paid small stipends to lead peer support groups. People came in droves, and our membership and reputation began to grow. More and more we acted as case managers for persons trying to wade through the intricacies of the welfare, SSI, and vocational rehabilitation systems--and we were often requested to do this by social service agencies. Our work included crisis intervention and individual peer support for persons who had no one else to call, or no one else to trust. In eight years there was not a single suicide within the PCPL membership, which by that time had grown to over 150 persons.
Many of our members "graduated" from stipend work at the PCPL to college degree programs or real jobs in the community. These were the same people whose families had given up on them and who had, like me, been told by the doctors that they would have to live a restricted existence for the rest of their lives. The best that the vocational rehabilitation system could offer them was often only a job such as assembling cardboard boxes at less than $1.00 an hour.
But by 1987, I was burnt out from my work and weary of battling the psychotic episodes that continued to plague me. I decided to leave the PCPL and return to Woodstock, where I could develop my Dharma practice at KTD and try to clear away the anger and fear that led me to abuse my mental states until they got out of control. I moved in 1988, and began volunteering at local mental health agencies and at a self-help group.
I always feel most comfortable with other mental health clients--my peers. In general, those of us who join a peer support group are trying to return to or to maintain a decent life. Many ex-patients have succeeded in this, and they are all around us at work, at church, at the grocery store, and at poetry readings. The public does not notice them because they usually remain silent. After all, once other people know our label, no one wants to talk to us, much less hire us. We have to lie even to get a driver's license. The stigma of mental illness is a mark of shame that compels millions of persons to hide in the shadows, and this in turn perpetuates our shame. The only visible psychiatrically labeled people in our world are those who get in the way on city streets or who otherwise insist on making a spectacle of themselves.
We call ourselves a democracy, but our society scapegoats its most vulnerable members. In subtle and not-so-subtle ways, psychiatrically labeled people are saddled with the blame for innumerable ills. All people "with a history of mental illness" are assumed to be like the villains in the hundreds of TV shows and newspaper stories about demonic killers. This reflects an unspoken taboo by which madness is seen as a powerful evil, rather than the human suffering that it actually is. The fear of mental illness goes beyond reason to a deeply hidden terror in all of us. Mental illness is our culture's greatest taboo.
There may be fewer people in mental institutions today than there were 20 years ago, but now there are literally millions of persons who take psychiatric drugs daily. These are people who have been deinstitutionalized into boarding homes and nursing homes. They are youths sitting behind closed doors in their parents' homes and getting old. And they are middle-aged people alone all day in substandard apartments with only a TV and a telephone for human contact.
For all of these invisible people, security has become merely the absence of symptoms--happiness is forever out of reach. Whatever the diagnosis, it all boils down to suffering. What mental patients want is simply a little human kindness; and in a crisis of pain and terror, compassion goes a long way. The "cure" for mental illness is perhaps not so simple. It involves, I think, first recognizing a person's spirit that has been imprisoned with fear and then helping to uncover that intrinsic worth rather than looking for some inherent "evil."
-- Published in Family of Woodstock Newsletter August 1989, revised 1994
*** Sharewrite 1994 Sally Clay ***
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