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I became a consumer advocate in 1981. I was recently discharged from the state hospital in Maine, and I was fed up with the way I had been treated there. I had been drugged to oblivion by doctors who never talked to me, and every time I tried to assert myself and regain my self respect, I wound up in the seclusion room. Calling that room "seclusion" was just another example of psychiatric doublespeak, for its purpose was not pleasant and peaceful seclusion but, really, solitary confinement. Some of you may have experienced that kind of punishment. If you have, you know the torment of being locked up all alone when what you really need is human contact and comfort.
When I got out of the hospital, I joined a new organization called the Alliance for the Mentally Ill. I learned that AMI was part of a new social movement that consisted of family groups like AMI and few peer support groups run by consumers. I joined up with the consumers, with our small support group called the Consumer Coalition. The first test of my commitment to this new movement came when the Office of Mental Health scheduled some public hearings on client rights. Some employees of the department had produced a document which they claimed laid out patient rights for persons committed to the state hospital, as I had been only a few weeks before. The vice president of AMI, who was also a lawyer, urged me to testify at the hearing, and to use my experience to comment on the rights proposed by the department.
I agreed, and obtained a copy of the rights regulations. But as I read it, my anger mounted. The regulations were supposed to list rights enjoyed by mental patients -- but in the document, the word "rights" never even appeared! The regulations were written entirely from the point of view of the treating staff. When anything approaching civil rights was mentioned, it was not named as a right held by the patients, but instead was described as rules of behavior for staff. For example, if consent to a certain medication was required, it was described not as the patient's right but as measures to be taken by staff to obtain a signature.
It was easy for me to prepare a written response to the rights regulations, since I am a writer, and I had my talk completed well in advance of the hearing. What was not so easy, however, was working up the courage to speak in public. I had always avoided public speaking of any kind. I avoided debates or other such activities when I was in school, and I even refused to lead classes in my church youth group. As the time for the hearing approached, I became more and more nervous. I did not think I was going to be able to do this!
On the morning of the hearing, I was a wreck. Even though Helen, the lawyer, had promised to sit next to me, I dreaded the meeting, and was filled with fear. Then I remembered a bottle of pills that I had in my medicine cabinet. They had been given to me before I left the state hospital by the psychiatrist who advised me that I could try taking the pills if I felt that I was in danger of becoming manic. I was not manic, but I certainly needed a boast to my courage. I took one of the pills, and put the bottle in my purse in case I needed another one. What I did not realize was that the pill I took was not a tranquillizer, but was a heavy duty neuroleptic, called haldol.
By the time I reached the hearing, I was in the midst of what I thought was a full-blown panic attack. My hands were shaking and my brain was screaming in my head. I sat at one of the tables, looking across at all of the providers and government employees who were there to testify. I was practically jumping out of my seat; I needed to be nailed down. Clearly, I thought, the pill was not working. I decided to take another one. This only made things worse. My hands started shaking uncontrollably, and I was jumping out of my skin. When I told Helen how I was feeling and what I had done, she looked at me in horror. Finally I realized what had happened. My panic attack was not psychiatric, but was a reaction to haldol. But it was too late to do anything about it. I had to grit my teeth and go ahead with my testimony. Somehow I managed to get through it; it even seemed that my testimony was successful, as many of the other advocates complimented me on what I said. In the weeks ahead, I was invited by the Office of Mental Health to take part in a panel to review client rights and rewrite the regulations. This panel met over the course of four years and eventually resulted in a new set of client rights that were voted as law by the legislature.
After the hearing, however, I had to recover from the haldol. The next day I could not leave my apartment. I had to call a case manager from a local agency to come sit with me while I shook and waited for the side effects of the drug to wear off.
In the next months, the Consumer Coalition began to grow and thrive. We were no longer just a support group, but were now also a speaker's bureau, a publisher of books and newsletters, and a voice of advocacy for our members and others who wound up in the hospital. To reflect our new active stance, we changed our name to the Portland Coalition for the Psychiatrically Labeled.
In June of 1983, members of the Coalition organized a protest against the treatment of psychiatric patients in the emergency room at Maine Medical Center, where people in psychiatric crisis often waited alone and under guard for many hours in a windowless room before being helped. The protest started from downtown Portland, with members marching the length of the peninsula to the hospital, where they confronted the waiting psychiatrists. We were supported by national consumer leaders who drove up from Boston, and who screamed at the psychiatrists, much to our embarrassment. Leaders of a local disability group also joined us, and followed us all the way in their wheelchairs. The event was widely covered by the local TV stations and newspapers. The result of the protest was a series of meetings between the Coalition members and Maine Medical Department of Psychiatry that lasted over 5 years and brought improvements in the mental health system. This was the beginning of an organized consumer voice in Maine, where dialogues with mental health professionals soon were established at the state mental hospital as well.
The Portland Coalition emerged just at the time when the Consumer Movement itself was gaining in credibility and strength. The movement had already existed for about 10 years. It started in the 70's as a protest movement, organized on the model of the civil rights movement and other groups in the 70's. The first consumer activists were very angry and very radical. They did not use the term "consumer," but chose instead to call themselves "ex-inmates." Because they refused to accept government funding, the first groups were very poor, and all of their activities were done on a shoestring. They created organizations such as Insane Liberation Front in Oregon, Mental Patients Liberation Front in Boston, Network Against Psychiatric Assault in California, Project Acceptance in Kansas, Mental Patients Alliance in New York, and the Vermont Liberation Organization. "Ex-inmates" in California published a monthly magazine entitled Madness Network News.
Most of these were advocacy and protest groups who met in rented space, with the exception of Project Acceptance, which was the first consumer-run drop-in center. They were organized by leaders such as Judi Chamberlin, Howie the Harp, Su Budd, Sally Zinman, George Ebert, and Joe Rogers, some of whom are still around today. One early consumer-run program was a residence for mental health consumers operated right here in Florida, in Lake Worth, by Sally Zinman and called Alternatives to Psychiatric Association of Palm Beach County Florida. Sally is now the director of the California Network of Mental Health Clients, the largest statewide client organization.
Back in the seventies these consumer activists called themselves the "Anti-Psychiatry Movement," and every year they put on a national conference entitled "Conference Against Psychiatry and for Human Rights." Some of us from the Coalition attended the conference that took place in Syracuse in 1982, and for me this was an eye-opener. I found myself in the midst, not of sheepish mental patients, but of dynamic leaders who were determined to create a true movement. Even though the rest of the country was leaving the seventies and all of its accoutrements, members of the consumer movement still dressed like hippies and talked like militants.
After attending several days of workshops and fiery speeches, I joined a group of activists who planned a demonstration at a local mental hospital, one that was notorious for using electroshock to treat patients. We were all, of course, opposed to ECT, and it was one of my special issues, as I had been given 30 shock treatments a few years before, and had lost two years of my memory. We gathered at the front door of the building and chanted slogans such as "The People United Will Never Be Defeated" with signs reading "The Saints Would be Shocked." Then some of the leaders positioned themselves at the door, attaching themselves to each other by chains so that no one could enter or leave the building. I was standing next to Joe Rogers, who announced that we needed to get locks for the chains so that the demonstrators could not be forcibly removed. Since I was the nearest person with a car, I gave Joe a ride around the neighborhood, and we stopped at all of the corner groceries until we found one with locks. Returning to the hospital, we put locks on the demonstrators and continued our chanting, also sending greetings to the patients on the third and fourth floors who stood waving at the windows. Unfortunately, the demonstration came to rather a disappointing end, as the police were able to disentangle the chains, and nobody was arrested. Joe Rogers went on from that conference to become one of the major leaders of the movement. He is now director of the Mental Health Association in Philadelphia, an organization run almost entirely by consumers, and he also led one of the first attempts at creating a national organization for consumers.
The anti-psychiatry conference in Syracuse was one of the last held. The militant focus of consumer groups began to wane in the early 80's, when the movement adopted a service orientation. The Portland Coalition was one of the first of these new service organizations, and managed to combine both peer support and advocacy in its work. Funding for consumer-run programs became available from the national Community Support Program. Other ex-mental patients, who called themselves "consumers" instead of "ex-inmates," began to organize drop-in centers, consumer-run residences, and businesses. In 1987, the California Network of Mental Health Clients received funding for advocacy from California's Protection & Advocacy agency. The Portland Coalition succeeded in writing grants from the Catholic Bishops Fund and the Presbyterian Church. By 1985, the annual consumer conferences, now called "Alternatives," were funded by CMHS (then NIMH). The first year, "Alternatives" was held in Baltimore, and the next year in West Virginia. These conferences are now attended by as many 1500 people. What they have lost in passion and protest, they have gained in inclusiveness. Even more than before, the annual Alternatives conference is a means for new consumer/survivors to learn for the first time what the consumer movement is all about, and how they have an opportunity to be involved in it. Attending this conference is a tremendously empowering experience.
We have just completed the third decade of the consumer movement. In the last 10 years consumer/survivors have jumped enthusiastically into the digital revolution. Early in the 90's, Sylvia Caras in Santa Cruz, CA, set up one of the first email lists, this one devoted to mental health consumer/survivor/ex-patients, or CSX, as we now called ourselves. The new mailing list was first called "We Are Crazy," and later became just plain "Madness." As more and more consumers came online, the mailing list branched out into an action list, "ActMad," and numerous others, including a list for women called "MadGrrls." Using the Internet has proved to be a powerful tool for exchanging information and networking.
In the last few years, consumer/survivors have moved into paid jobs, both within their newly funded consumer organizations and with the mental health system itself. Many states now have an Office of Consumer Affairs headed by a psychiatrically labeled person. New York, Colorado, New Hampshire, and Florida, all initiated successful projects in which consumers were hired as case managers or "peer specialists." Studies show that case management programs involving consumers in professional-level jobs are successful in preventing rehospitalizations, and increasing self-esteem and other desirable outcomes.
Over the last three decades, community mental health services have shifted their focus from medication and stabilization to psychosocial rehabilitation, offering case management, day programs, housing support, and other services to those already offered under the traditional medical model. Many of these positive changes can be attributed directly or indirectly to the work of consumers in the movement, who have made it very clear that we don't like coercive treatment and we do want a say in what happens in our own lives.
Several states have enthusiastically supported consumer initiatives. New York was one of the first states where the idea of recovery and of consumer-directed services was supported under the auspices of a powerful government agency, the NY Office of Mental Health, which supported a consumer-operated program of technical assistance and consumer organizing to establish a statewide consumer organization. Similarly, the state of Connecticut funds and supports Advocacy Unlimited, a statewide program of education in advocacy. Unfortunately, Florida is not one of those states that encourages consumer-run initiatives.
In Florida, it has taken class action lawsuits to have impact on consumer-operated endeavors. In South Florida, the Sanbourne v. Chiles lawsuit, on behalf of residents at the state hospital, incorporated the consumer perspective and employed a consumer as full member of the plaintiff's team. The new money infused into the system as a result of the Sanbourne lawsuit was instrumental in promoting consumer-run programs in Broward County during the period 1991-94, and it was also responsible for the addition of an Office of Consumer Affairs in Broward County and the introduction of the PATH Project of case management at Henderson Mental Health Center. More recently, the class action lawsuit to close down G. Pierce Wood resulted in the creation of a new network of intensive case management in Central Florida. Still, with lack of government support, Florida's first attempt at organizing a statewide consumer group withered and died about 5 years ago.
Over the years, consumer/survivors have attempted to create a national organization that would have some legislative clout, in the same way that NAMI has developed a powerful national voice for families of people with mental illness. It has not been easy, because even with a few more opportunities for employment, many mental health consumers still live in poverty and disempowerment. In the 1990's two competing national consumer organizations formed, with the goal of pulling people together with a unified voice. These were the National Association of Psychiatric Survivors, or NAPS, and National Mental Health Consumers' Self-Help Clearinghouse, or NMHCSC. These fell apart amidst a lot of nationwide squabbling. Only the Clearinghouse still exists, and is now a federally funded technical assistance center. Two other TA Centers, CONTAC and the National Empowerment Center, are funded by CMHS to assist consumer and provide information. Another national organization, Support Coalition International was formed in 1990 by David Oaks, and is still going strong. The Support Coalition, though, does not appeal to all consumers because of its militant stance. It has picked up the torch from the old consumer movement, and has successfully advocated for a number of issues over the years, especially electroshock.
Two national organizations for the arts were formed in the 1990's - one of these was called Altered States of the Arts and the other, National Artists for Mental Health, or NAMH. Altered States puts on a talent show every year at the Alternatives Conference. NAMH sponsors art shows in New York State and holds an annual conference.
With our new voice on the Internet, we can now talk to each other and send attachments over great distances; it is easier now to plan and to network. We have learned bitter lessons from past experiences, and I dare to hope that someday soon we will be ready and able to come together in an overarching national organization.
As I mentioned earlier, the views of consumer/survivors have already had a positive influence on the mental health system in this country. No longer are people abused and warehoused in large institutions. Consumers are, much more than before, allowed to take an active part in their own treatment, and often even hold paid jobs in traditional programs. Some of the principles of consumer programs have been incorporated in traditional programs.
Self-help and peer support were first popularized by Alcoholics Anonymous, and were adopted by consumer/survivors as the foundation of our programs. The second most important value for consumers is "empowerment." Empowerment is the idea that instead of being "talked at" we want to be "talked with." Empowerment means that we can act on our own behalf and can have control over our own lives. Regardless of the philosophy of a mental health program, the formal treatment system carries the threat of involuntary treatment and coercion, and there is a built-in imbalance of power between professionals and clients. Self-help groups and services are not troubled by this imbalance, for they operate from a sense of mutual help and equality. The concept of "recovery," which also has been in general use in A.A. for at least forty years, is strongly related to self-esteem, hope, and confidence, for these are all essential to healing.
For me, there is one more consumer principle that helped me out over the years, and even contributed to my recovery. This principle is called the "Helper Principle," and it means that when one person works to help another person, then both people benefit. When I started the Portland Coalition over 20 years ago, I was still suffering from severe manic episodes that led to hospitalizations on an almost yearly basis. As I worked as a peer advocate and peer counselor, helping the people that joined the Coalition, I myself gained in strength and well-being. Eventually, my work and my prayers paid off. I gained the self-respect that I had not had before, and my manic episodes ceased.
*** Sharewrite 2002 Sally Clay ***
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zangmo@sallyclay.net.