Spirituality and Recovery from Mental Disorders

LESSON 2
The Consumer Movement

History of the Consumer Movement

There is a growing movement throughout the United States (and the world) of people calling themselves consumers, survivors, or ex-patients--who have been diagnosed with mental disorders and are working together to make change in the mental health system and in society. The consumer movement grew out of the idea that individuals who have experienced similar problems, life situations, or crises can effectively provide support to one another. According Sally Clay, one of the leaders of this movement,

The Consumer/Survivor Communities began 25 years ago with the anti-psychiatry movement. In the 1980's, ex-mental patients began to organize drop-in centers, artistic endeavors, and businesses. Now hundreds of such groups are flourishing throughout the country. Our conferences (many sponsored by NIMH) have been attended by thousands of people. More and more, consumers participate in the rest of the mental health system as members of policy-making boards and agencies.

When it began, there was an initial hostility toward the mental health system, but the consumer movement has evolved into a recovery model that encompasses everyone involved in caring for people with mental disorders.

From around the country, people who had been in treatment for schizophrenia and other forms of serious mental illness began coming out of the shadows and identifying ourselves. We were no longer willing to remain hiding, quietly suffering the ridicule and hostility that too often characterize people's reactions to serious mental illness. Slowly, we began to organize, forming local, state, and then national organizations for recovering persons and our allies. We advocated, trying to regain our rights as human beings. For the most part, the more articulate consumer-advocates felt that professionals, who so readily dismissed our point-of-view when we had been patients, were not to be trusted. Many of us felt we could make it "on our own." And why not? All of us had been diagnosed with having serious mental illnesses...About twelve years ago, however, some consumer-advocates began to suggest that many of us, particularly those who were most disabled, could not so easily make it "on our own."We suggested that most of us did indeed need other people: family members, friends, and often the help of experienced mental health professionals.
Frederick J. Frese

The importance of the consumer movement has been recognized and documented by mainstream mental health, such as in the Surgeon General's Report.

A history by the consumer organization--National Empowerment Center

Case Example and Advocate

Frederick Frese,PhD is a vocal example of the recovery model. Thirty years ago, he was locked up in an Ohio psychiatric hospital, dazed and delusional, with paranoid schizophrenia.

In March of 1966, I was a young Marine Corps security officer. I was responsible for guarding atomic weapons at a large Naval Air base and had just been selected for promotion to the rank of Captain. One day, during a particularly stressful period, I made a "discovery" that certain high-ranking American officials had been hypnotized by our Communist enemies and were attempting to compromise this country's nuclear capabilities. Shortly after deciding to reveal my discovery, I found myself locked away in the seclusion room of the base's psychiatric ward, diagnosed with schizophrenia. This was the beginning of my official life as a person with serious mental illness. After about six months I was released from the psychiatric ward at the U.S. Naval Hospital at Bethesda, Maryland, and from the Marine Corps. During the following ten years I was repeatedly re-hospitalized and released from a variety of psychiatric facilities around the country. Most of these hospitalizations were involuntary.

Twelve years later, he had become the chief psychologist for the very mental hospital system that had confined him. Along the way, despite 10 other hospitalizations, he married, had four children and earned a master's degree and doctorate. He is currently an active consumer advocate for the recovery model.
The full story of Frederick J. Frese, PhD

Stigma

The stigmatizing of people with mental disorders has persisted throughout history. It is manifested by bias, distrust, stereotyping, fear, embarrassment, anger, and/or avoidance. Stigma leads others to avoid living, socializing or working with, renting to, or employing people with mental disorders, especially severe disorders such as schizophrenia. It reduces a person's access to resources and opportunities (e.g., housing, jobs) and leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking, and wanting to pay for, care. In its most overt and egregious form, stigma results in outright discrimination and abuse. More tragically, it deprives people of their dignity and interferes with their full participation in society.

National Stigma Clearinghouse Antistigma home page
This Clearinghouse tracks stigmatizing stereotypes of mental illness in the media and provides information about stigma to concerned activists. It focuses on inaccurate images of mental illness in news, advertising, and entertainment media but also include articles and news on stigma.

The Roots of Stigma
The Surgeon General's Report on Mental Health includes a section on stigmatization of people with mental disorder.

Online Support Resources

Mutual support is another foundation of the mental health consumer movement. Throughout the the world, consumers are creating self-help groups (also called support groups, peer-run services, consumer-run services, and alternative services).

National Mental Health Consumers' Self-help Clearinghouse
This consumer-run national center serves the mental health consumer movement. They help connect individuals to self-help and advocacy resources, and offer expertise to self-help groups and other peer-run services for mental health consumers. Self-help groups have proven to be effective on a number of levels:

The act of joining together with others who have walked in your shoes enables individuals to recognize that they are not alone.
Individuals in the mental health system often do not have the support of family and friends. Self-help groups can provide the support that may be missing from these other systems.
Self-help groups offer a safe place for self-disclosure.
Self-help groups encourage personal responsibility and control over one's own treatment. Because group members are actively helping others, they gain a sense of their own competence.
In contrast to the professional/client relationship, members of self-help groups are equals.

The Clearinghouse has developed the Freedom Self-Advocacy Curriculum, a complete set of free online training materials for teaching consumers how to advocate for themselves.

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