Mental Health Advocacy, From Then to Now

Since the beginning of time, we have seen and read about the grotesque and inhumane "treatments" imposed upon people who experience emotional / psychological distress -- called by those who believe in the medical model of "mental illness."

Through the ages, mental patients have been subject to torture -- called "treatment" -- which has included being shackled to walls of dungeons, put in tanks of ice-cold water, spun in chairs for hours, and, more recently, seclusion (isolation), most often without clothing; restraints (being strapped to a bed with leather restraints, often in a spread-eagle position); forced "medications" (powerful psychoactive drugs); forced labor (called "industrial therapy" or some other term), and, sometimes, electroshock, which has become a more popular form of treatment, after going "out of vogue" for a period in the 1970s' and early 80's. There are also reports of the return of lobotomies, particularly at one hospital in Massachusetts. If you have seen "One Flew Over the Cuckoo's Nest," almost all people who have experienced hospitalization in a mental institution agree that it was an accurate depiction of life on a psychiatric ward--then and now.

The history of advocacy -- which literally means "speaking for another" -- is also long, beginning with Clifford Beers' book "A Mind That Found Itself," and Dorothea Dix, who attempted to help make mental hospitals at least somewhat cleaner and safer.

Today, advocacy for people who have experienced the mental health system is still in its infancy, though it has been in existence in various forms for decades. Advocacy began, in its most pure form, by ex-mental patients, who, in those early days, called themselves ex-inmates. . . and some still do. It began with small groups spontaneously springing up in Northern California, New York, Massachusetts, and Kansas, in the late 1960's. Early advocacy efforts were simply groups of former mental patients meeting together in church basements or each other's apartments doing what the women's movement termed "consciousness-raising." These people moved from victimization to action, and early advocates -- Judi Chamberlin, Howie the Harp, Sally Zinman, Su and Dennis Budd, and many others--staged acts of civil disobedience, such as chaining themselves to the gates of mental hospitals; forming a human chain at an early-1970's meeting of the American Psychiatric Association (30,000 members strong), preventing conference attendees from entering; picketing later APA meetings (a picket is planned for this year's meeting in San Diego); and "liberating" people from mental hospitals, by simply entering and taking the person out.

These pioneers were truly the early heroes of the movement which is now called mental health advocacy. Their actions spawned the publication of the first national publication by and for mental patients -- the "Madness Network News," published in San Francisco for approximately 10 years. With virtually no money, no foundation grants, and no outside support, groups began springing up throughout the country. Some of these became oriented toward self-help and mutual support, others retained their roots in opposition to psychiatry; most were a hybrid of both. A conference called the International Conference on Human Rights and Against Psychiatric Oppression was held annually, often at campgrounds or college campuses, organized and run by activists in this growing movement.

In the late 1970's, the federal government began to take notice, and encouraged states to support these groups through small grants. The Community Support Program was developed within the National Institute of Mental Health (now the Center for Mental Health Services), and it was charged with involving more people who had experienced psychiatric services in policy making and program development. The term "consumer" came out of this, and in 1984, the first national Alternatives conference was held -- a meeting of people who'd experienced the system first-hand, and offered workshops to each other on how to start self-help groups, how to raise funds, and other topics relevant to self-help.

However, this conference also marked the beginning of the split between "consumers" -- those who were primarily clients of Community Support Programs (day treatment centers, local supportive services, and who willingly took medications, etc.), and ex-patients -- who now call themselves "psychiatric survivors" -- who reject the system, and especially oppose "forced treatment" of any kind. Forced treatment is the legal means by which people are committed to psychiatric facilities; the most recent incarnation of forced treatment is "outpatient commitment," which is a legal method to force people to take medication, even while living on their own. Outpatient commitment now exists in some form in most states, promoted by the National Alliance for the Mentally Ill, a group of family members, mostly parents, of adult children who are diagnosed as mentally ill. Unfortunately, all federal funding comes with strings attached, and this short-term infusion of federal dollars was, in part, responsible for a "split" in the movement (between "consumers" and "survivors"), and for the demise of some otherwise independent organizations, such as the National Association of Psychiatric Survivors and the "Madness Network News." What has remained are "consumer" groups, frequently dependent on state or federal money for their survival. Nonetheless, many outspoken "survivors" still remain active and involved in the larger movement.

In the meantime, advocacy programs were being formed in some states, with state or county funding. One of the earliest internal advocacy programs was founded in Minnesota, where Bill Johnson -- a disgruntled and disheartened social worker at Fergus Falls State Hospital -- convinced the administration to allow him to open an "advocacy" office." In Pennsylvania, lawyer David Ferleger sued the state on behalf of all the residents of one state hospital -- and won. Ohio had also established a "patients rights" service. Additionally, the Mental Health Law Project, now called the Bazelon Center for Mental Health Law, in Washington, D.C., was attempting to impact mental health services by taking on individual cases and class action suits which would impact the system. A group of these advocates, many of them lawyers, met and, in 1980, formed the National Association for Rights Protection and Advocacy.

In 1985, Congress, under the leadership of Senator Lowell Weicker of Connecticut and Rep. Henry Waxman of California, held hearings about conditions in state mental hospitals and other treatment programs. In the first and only piece of social legislation put forth during the Reagan years, a bill was passed to create a formal advocacy program in each state and territory to serve people with psychiatric disabilities. Most of the programs (called PAIMI -- Protection and Advocacy for Individuals with Mental Illness) became part of the already-existing advocacy programs for people with developmental disabilities, which had been established in the mid-70's. However, some became part of state agencies, and a few became independent, freestanding agencies. Funding was minimal, and services were limited to those who were currently hospitalized, or who had been hospitalized within the past 90 days. Nonetheless, perhaps the most important impact this legislation had was that it required that at least 50% of the membership of the Advisory Councils to each PAIMI program be current or former recipients of mental health services, or their family members. (Some states initially tried to circumvent dealing with "mental patients" and only recruited family members, so regulations were later developed to require participation from consumers, psychiatric survivors, and ex-patients.)

It is important to note that none of the advocacy programs discussed are affiliated with the Church of Scientology's "Citizen's Commission on Human Rights," which opposes psychiatry, but for its own reasons.

While PAIMI programs have had some impact during their ten years' existence, they have also been criticized for not becoming more pro-active, for not involving more 'activist" ex-patients on their Advisory Councils, and for filing few legal actions. Part of this, of course, relates to their Federal mandate. And, to their credit, some PAIMI programs have been extremely supportive of local groups, ex-patient advocates, and the psychiatric survivors' movement.

In the meantime, NARPA now exists as the only independent advocacy organization in the country. By its bylaws, at least 1/3 of the members of its Board of Directors must identify themselves as current or former recipients of mental health care -- at present, the ratio is 2/3. The membership is an unusual mix of attorneys, non-legal advocates, and ex-patients -- with many people whose roles overlap. At least two NARPA members are attorneys who have also been incarcerated in mental hospitals. NARPA publishes a quarterly newsletter, "The Rights Tenet," and holds an annual conference which brings together the "best and brightest" -- offering cutting-edge information to its members and allies. A turning point occurred at a NARPA conference in 1988, when feminist author and scholar Kate Millett was the keynote speaker and, for the first time, publicly spoke of her incarcerations in mental hospitals in the U.S. and Ireland, and spoke poignantly and passionately of her own philosophical struggles with the current "medical model" of mental health treatment. Few of us knew, then, that Kate was, at that time, withdrawing from her dependence on lithium. She went on to write and publish The Loony-Bin Trip (Simon and Schuster, 1990), and credited meeting others at the NARPA conference for helping in her recovery.

NARPA's next annual conference will be held in [New Orleans, Louisiana, September 6 through 9, 2023]. Keep checking NARPA's website for updates. For additional information about NARPA or the conference, write: NARPA, P.O. Box 855, Huntsville, AL 35804 (or Contact NARPA on the Internet. An all-volunteer organization, NARPA seeks contributions to help with the costs of conferences. We work hard to keep fees and hotel costs to a minimum and we typically offer subsidies to people living on fixed incomes or disability payments who would otherwise be unable to afford the conference fees. We are currently conducting a fundraising drive, reaching out to individuals as well as foundations.

NARPA also offers a video documentary called "Crazy Women: Madness, Myth, and Metaphor," which features Kate Millett, Judi Chamberlin, Sally Zinman, and other female leaders of the movement discussing their experiences and psychiatric treatment. Please feel free to contact NARPA at the address above if you're interested.

Rae Unzicker, 2001