The consumer/survivor movement

On this plate (6 sections)

Who gets to speak for people who use mental health services? The consumer/survivor movement answers that people with lived experience should speak for themselves, and it grew out of the same decades that saw large hospitals shrink. This page covers where the movement began, the words its members use for themselves (which differ, and which the editors list without ranking), its main ideas, and how some of them reached peer support and public policy.

Where the movement began

An Oregon university archive describes the psychiatric survivors movement as emerging from the social unrest and civil rights movements of the late 1960s and early 1970s, among people who had experienced human rights violations in the mental health system. A 2012 review of recovery in the United States likewise says the movement of people who called themselves "ex-patients" grew up around deinstitutionalization, as people who had been institutionalized organized to assert and protect their civil rights.

The 1990 history places the start at approximately 1970. Among the earliest groups were the Insane Liberation Front in Portland, Oregon (1970), the Mental Patients' Liberation Front in Boston (1971), a Mental Patients' Liberation Project founded the same year, and the Network Against Psychiatric Assault in San Francisco (1972). In Vancouver, the Mental Patients' Association began running a drop-in center and residences within months of its founding in 1971. A newsletter, Madness Network News, ran from 1972 into the mid-1980s and was soon run by ex-patients alone.

The first Conference on Human Rights and Psychiatric Oppression took place in 1973, and attendees rejected the sponsoring professor's proposed name, "The Rights of the Mentally Disabled," as stigmatizing. From 1976 the conference was limited to patients and ex-patients, and it was held yearly through 1985.

The words people use

There is no single agreed term, and the sources are open about the disagreement. The 1990 history reports that "ex-patient" was controversial because it seemed to accept the medical model, that Madness Network News promoted "ex-psychiatric inmates," and that other groups used "consumers" or "psychiatric survivors." It adds that "inmates" and "survivors" signaled the more militant stance.

The 2012 review describes a split in orientation. People who called themselves consumers were somewhat more accepting of the medical model and tried to influence the mainstream system. The survivor strand was committed to building alternatives. The review also states that each individual remains free to choose a label. The editors use "consumer/survivor" as a shorthand for the whole movement.

Core ideas

Self-determination sits at the center. The Oregon archive says survivors rejected being treated as objects to be assessed and insisted on a right to make decisions about their own care, and some used the banner of "Mad Pride." The 1990 history lists the groups' shared principles: mental health terminology was treated with suspicion, attitudes that limited opportunities for patients were to be challenged, and members' anger toward the system was treated as legitimate rather than as a symptom. Its two main activities were advocacy and self-help alternatives to psychiatric services.

The slogan "Nothing About Us Without Us" expresses the participation principle. The United Nations Secretary-General's 2004 message called it the motto of the international disability movement and said persons with disabilities are the best experts on removing barriers to their participation. A European group of users and survivors of psychiatry uses the same words on its website. The UN message presents it as the motto of the wider disability movement, and it matches the demand of users and survivors to be present where decisions are made.

From protest to peer support and policy

The movement's influence is easiest to trace through participation. The 1990 history reports that activists demanded places at official forums, packed public hearings of the President's Commission on Mental Health, and pushed a federal community support program to acknowledge funding for patient-run services. The Commission's 1978 report noted that many of these alternative groups were wary of being classified as mental health services.

The 2012 review follows later steps. A national conference for consumers called Alternatives was first held in 1985. A 1999 US Surgeon General's report asserted in a national policy document that recovery is possible. In 2003 the President's New Freedom Commission called for a consumer-driven system. By 2010, 25 states had a way to reimburse certified peer specialists through Medicaid. The practice itself is explained in What is peer support?, and the wider idea of speaking up is covered in What is mental health advocacy?

Disagreements and limits

The movement was never a single voice. The 1990 history notes organizations with very different positions, from those who adopted the illness model to those who rejected it, and says most patients and ex-patients probably identify with none of the groups. It also criticizes a large organization made up mainly of relatives, which it describes as embracing the medical model and promoting wider use of involuntary commitment. That is the history's characterization, not a neutral finding. Relatives would describe their own history differently, and that perspective is set out in Family advocacy and the role of carers.

The movement also overlaps with disability rights. The 1990 history notes that the Americans with Disabilities Act, signed in July 1990, covers people with psychiatric disabilities. For the treaty that now frames many of these arguments, see The UN Convention on the Rights of Persons with Disabilities. The institutions that the early groups reacted against are described in Asylum reform and its critics, and dates appear on the timeline.

The short version

The consumer/survivor movement began around 1970 when former patients formed their own groups, publications and conferences. Its members disagree about names and about psychiatry, but they share an insistence on self-determination and participation. Peer support and recovery-oriented policy are among the places where those ideas have been absorbed. Anyone weighing a treatment choice should talk with a clinician or a qualified adviser rather than rely on a history page.