Psychiatric survivors movement

The psychiatric survivors movement arose out of the civil rights movement of the late 1960s and early 1970s and the personal histories of psychiatric abuse experienced by patients. The key text in the intellectual development of the survivor movement, at least in the US, was Judi Chamberlin's 1978 text On Our Own: Patient Controlled Alternatives to the Mental Health System. Chamberlin was an ex-patient and co-founder of the Mental Patients' Liberation Front. Coalescing around the ex-patient newsletter Dendron, in late 1988, leaders from several of the main national and grassroots psychiatric survivor groups felt that an independent, human rights coalition focused on problems in the mental health system was needed. That year the Support Coalition International (SCI) was formed. SCI's first public action was to stage a counter-conference and protest in New York City, in May 1990, at the same time as (and directly outside of) the American Psychiatric Association's annual meeting. In 2005, the SCI changed its name to MindFreedom International with David W. Oaks as its director.

Common themes are "talking back to the power of psychiatry," rights protection and advocacy, self-determination, and building capacity for lived experience leadership. While activists in the movement may share a collective identity to some extent, views range along a continuum from conservative to radical in relation to psychiatric treatment and levels of resistance or patienthood.

History

Precursors

The modern self-help and advocacy movement in the field of mental health services developed in the 1970s, but former psychiatric patients have been campaigning for centuries to change laws, treatments, services and public policies. "The most persistent critics of psychiatry have always been former mental hospital patients", although few were able to tell their stories publicly or to openly confront the psychiatric establishment, and those who did so were commonly considered so extreme in their charges that they could seldom gain credibility. In 1620 in England, patients of the notoriously harsh Bethlem Hospital banded together and sent a "Petition of the Poor Distracted People in the House of Bedlam (concerned with conditions for inmates)" to the House of Lords. A number of ex-patients published pamphlets against the system in the 18th century, such as Samuel Bruckshaw (1774), on the "iniquitous abuse of private madhouses", and William Belcher (1796) with his "Address to humanity, Containing a letter to Dr Munro, a receipt to make a lunatic, and a sketch of a true smiling hyena". Such reformist efforts were generally opposed by madhouse keepers and medics.

In the late 18th century, moral treatment reforms developed which were originally based in part on the approach of French ex-patient turned hospital-superintendent Jean-Baptiste Pussin and his wife Margueritte. From 1848 in England, the Alleged Lunatics' Friend Society campaigned for sweeping reforms to the asylum system and abuses of the moral treatment approach. In the United States, The Opal (1851–1860) was a ten volume Journal produced by patients of Utica State Lunatic Asylum in New York, which has been viewed in part as an early liberation movement. Beginning in 1868, Elizabeth Packard, founder of the Anti-Insane Asylum Society, published a series of books and pamphlets describing her experiences in the Illinois insane asylum to which her husband had her committed.

Early 20th century

A few decades later, another former psychiatric patient, Clifford W. Beers, founded the National Committee on Mental Hygiene, which eventually became the National Mental Health Association. Beers sought to improve the plight of individuals receiving public psychiatric care, particularly those committed to state institutions. His book, A Mind That Found Itself (1908), described his experience with mental illness and the treatment he encountered in mental hospitals. Beers's work stimulated public interest in more responsible care and treatment. However, while Beers initially blamed psychiatrists for tolerating mistreatment of patients, and envisioned more ex-patient involvement in the movement, he was influenced by Adolf Meyer and the psychiatric establishment, and toned down his hostility as he needed their support for reforms. His reliance on rich donors and his need for approval from experts led him to hand over to psychiatrists the organization he helped establish. In the UK, the National Society for Lunacy Law Reform was established in 1920 by angry ex-patients sick of their experiences and complaints being patronisingly discounted by the authorities who were using medical "window dressing" for essentially custodial and punitive practices. In 1922, ex-patient Rachel Grant-Smith added to calls for reform of the system of neglect and abuse she had suffered by publishing "The Experiences of an Asylum Patient".

We Are Not Alone (WANA) was founded by a group of patients at Rockland State Hospital in New York (now the Rockland Psychiatric Center) in the mid to late 1940s, and continued to meet as an ex-patient group. Their goal was to provide support and advice and help others make the difficult transition from hospital to community. At this same time, a young social worker in Detroit, Michigan, John H. Beard, was doing some pioneering work with psychiatric patients from the “back wards” of Wayne County Hospital. Prior to the advent of psychotropic medication, patients on the “back wards” were generally considered to be "hopelessly sick." Beard began his work on these wards with the conviction that these patients were not totally consumed by illness but retained areas of health. This insight led him to involve the patients in such normal activities as picnics, attending a baseball game, dining at a fine restaurant, and then employment. Fountain House had, by now, recognized that the experience of the illness, together with a poor or interrupted work history often denied members the opportunity to obtain employment. Many lived in poverty and never got the chance to even try working on a job.

The hiring of John H. Beard as executive director in 1955 changed all of that. The creation of what we now know to be Transitional Employment transformed Fountain House as many members began venturing from the clubhouse into real jobs for real wages in the community. Importantly, these work opportunities were in integrated settings and not just with other persons with disabilities. The concept of what was normal was pervasive in all of what Fountain House set out to do. Thus, Fountain House became a place of both social and vocational rehabilitation, addressing the disabilities that so often accompany having a serious mental illness and setting the wheels in motion for a life of recovery and not disability.

Originated by crusaders in periods of liberal social change, and appealing not so much to other sufferers as to elite groups with power, when the early reformer's energy or influence waned, mental patients were again mostly friendless and forgotten.

1950s to 1970s

The 1950s saw the reduction in the use of lobotomy and shock therapy. These used to be associated with concerns and much opposition on grounds of basic morality, harmful effects, or misuse. Towards the 1960s, psychiatric medications came into widespread use and also caused controversy relating to adverse effects and misuse. There were also associated moves away from large psychiatric institutions to community-based services (later to become a full-scale deinstitutionalization), which sometimes empowered service users, although community-based services were often deficient. There has been some discussion within the field about the usefulness of antipsychotic medications in a world with a decreasing tolerance for institutionalization:

"With the advent of the modern antipsychotic medications and psychosocial treatments, the great majority are able to live in a range of open settings in the community—with family, in their own apartments, in board-and-care homes, and in halfway houses."

Coming to the fore in the 1960s, an anti-psychiatry movement challenged the fundamental claims and practices of mainstream psychiatry. The ex-patient movement of this time contributed to, and derived much from, antipsychiatry ideology, but has also been described as having its own agenda, described as humanistic socialism. For a time, the movement shared aims and practices with "radical therapists", who tended to be Marxist. However, the consumer/survivor/ex-patients gradually felt that the radical therapists did not necessarily share the same goals and were taking over, and they broke away from them in order to maintain independence.

By the 1970s, the women's movement, gay rights movement, and disability rights movements had emerged. It was in this context that former mental patients began to organize groups with the common goals of fighting for patients' rights and against forced treatment, stigma and discrimination, and often to promote peer-run services as an alternative to the traditional mental health system. Unlike professional mental health services, which were usually based on the medical model, peer-run services were based on the principle that individuals who have shared similar experiences can help themselves and each other through self-help and mutual support. Many of the individuals who organized these early groups identified themselves as psychiatric survivors. Their groups had names such as Insane Liberation Front and the Network Against Psychiatric Assault. NAPA co-founder Leonard Roy Frank founded (with colleague Wade Hudson) Madness Network News in San Francisco in 1972.

In 1971 the Scottish Union of Mental Patients was founded. In 1973 some of those involved founded the Mental Patients' Union in London.

Dorothy Weiner and about 10 others, including Tom Wittick, established the Insane Liberation Front in the spring of 1970 in Portland, Oregon. Though it only lasted six months, it had a notable influence in the history of North American ex-patients groups. News that former inmates of mental institutions were organizing was carried to other parts of North America. Former ILF member Howard Geld, known as Howie the Harp for his harmonica playing, left Portland to return to his native New York and help found the Mental Patients Liberation Project in 1971. During the early 1970s, groups spread to California, New York, and Boston, which were primarily antipsychiatry, opposed to forced treatment including forced drugging, shock treatment and involuntary committal. In 1972, the first organized group in Canada, the Mental Patients Association, started to publish In A Nutshell, while in the US the first edition of the first national publication by ex-mental patients, Madness Network News, was published in Oakland, continuing until 1986.

Some all-women groups developed around this time such as Women Against Psychiatric Assault, begun in 1975 in San Francisco.

In 1978, Judi Chamberlin's book On Our Own: Patient Controlled Alternatives to the Mental Health System was published. It became the standard text of the psychiatric survivors movement, and in it Chamberlin coined the word "mentalism."

The major spokespeople of the movement have been described in generalities as largely white, middle-class and well-educated. It has been suggested that other activists were often more anarchistic and anti-capitalist, felt more cut off from society and more like a minority with more in common with the poor, ethnic minorities, feminists, prisoners & gay rights than with the white middle classes. The leaders were sometimes considered to be merely reformist and, because of their "stratified position" within society, to be uncomprehending of the problems of the poor. The "radicals" saw no sense in seeking solutions within a capitalist system that creates mental problems. However, they were united in considering society and psychiatric domination to be the problem, rather than people designated mentally ill.

Some activists condemned psychiatry under any conditions, voluntary or involuntary, while others believed in the right of people to undergo psychiatric treatment on a voluntary basis. Voluntary psychotherapy, at the time mainly psychoanalysis, did not therefore come under the same severe attack as the somatic therapies. The ex-patients emphasized individual support from other patients; they espoused assertiveness, liberation, and equality; and they advocated user-controlled services as part of a totally voluntary continuum. However, although the movement espoused egalitarianism and opposed the concept of leadership, it is said to have developed a cadre of known, articulate, and literate men and women who did the writing, talking, organizing, and contacting. Very much the product of the rebellious, populist, anti-elitist mood of the 1960s, they strived above all for self-determination and self-reliance. In general, the work of some psychiatrists, as well as the lack of criticism by the psychiatric establishment, was interpreted as an abandonment of a moral commitment to do no harm. There was anger and resentment toward a profession that had the authority to label them as mentally disabled and was perceived as infantilizing them and disregarding their wishes.

1980s and 1990s

By the 1980s, individuals who considered themselves "consumers" of mental health services rather than passive "patients" had begun to organize self-help/advocacy groups and peer-run services. While sharing some of the goals of the earlier movement, consumer groups did not seek to abolish the traditional mental health system, which they believed was necessary. Instead, they wanted to reform it and have more choice. Consumer groups encouraged their members to learn as much as possible about the mental health system so that they could gain access to the best services and treatments available. In 1985, the National Mental Health Consumers' Association was formed in the United States.

A 1986 report on developments in the United States noted that "there are now three national organizations ... The ‘conservatives’ have created the National Mental Health Consumers' Association ... The ‘moderates’ have formed the National Alliance of Mental Patients ... The ‘radical’ group is called the Network to Abolish Psychiatry". Many, however, felt that they had survived the psychiatric system and its "treatments" and resented being called consumers. The National Association of Mental Patients in the United States became the National Association of Psychiatric Survivors. "Phoenix Rising: The Voice of the Psychiatrized" was published by ex-inmates (of psychiatric hospitals) in Toronto from 1980 to 1990, known across Canada for its antipsychiatry stance.

In late 1988, leaders from several of the main national and grassroots psychiatric survivor groups decided an independent coalition was needed, and Support Coalition International (SCI) was formed in 1988, later to become MindFreedom International. In addition, the World Network of Users and Survivors of Psychiatry (WNUSP), was founded in 1991 as the World Federation of Psychiatric Users (WFPU), an international organisation of recipients of mental health services.

An emphasis on voluntary involvement in services is said to have presented problems to the movement since, especially in the wake of deinstitutionalization, community services were fragmented and many individuals in distressed states of mind were being put in prisons or re-institutionalized in community services, or became homeless, often distrusting and resisting any help.

Science journalist Robert Whitaker has concluded that patients rights groups have been speaking out against psychiatric abuses for decades - the torturous treatments, the loss of freedom and dignity, the misuse of seclusion and restraints, the neurological damage caused by drugs - but have been condemned and dismissed by the psychiatric establishment and others. Recipients of mental health services demanded control over their own treatment and sought to influence the mental health system and society's views.