Advocacy Section:

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History of the Mental Health Consumer Movement

INTRODUCTION:

In the 1960s and 1970s, social change movements were part of our culture. Inspired by the African-American civil rights movement and civil unrest and resistance, women, gays, and people with physical disabilities organized for social change.

At this time, the big State hospitals across the country were being shut down, and new laws limiting involuntary commitment and its duration were being instituted. For decades, mental patients had been denied basic civil liberties, suffered systemic inhumane treatment, and spent lifetimes locked up in State hospitals.

Anecdotally, once released from these mental hospitals, people began meeting together in groups outside the hospital. These former "patients" shared feelings of anger about their abusive treatment and the need for independent living in the community. Their peers validated their feelings. From these isolated groups across the country, a new civil rights movement was born. It was predicated on the desire for personal freedom and radical systemic change; it was a liberation movement.

 

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The Beginnings—1970s
This decade was a time of finding each other and realizing that we were not alone, a time of militant groups and actions, a time of self and group education, and a time of defining our core values. It was a time of finding and growing our voice out of the anger and hurt bred by the oppression of the mental health system. It was a time of separatism as a means of empowering ourselves.

Activities:

  • Political, militant activism—demonstrations
  • Development and defining of values and positions
  • Annual Conference on Human Rights and Against Psychiatric Oppression held at campgrounds and college campuses, unfunded
  • Madness Network News, news vehicle for communication
  • Small groups—mostly on two coasts, militant names, e.g., Network Against Psychiatric Assault, Insane Liberation Front, and Mental Patient Liberation Front
  • Most common self-description was "psychiatric inmate"
  • Self and group information and education
  • Support, consciousness raising groups
  • Landmark book published in 1978: On Our Own: Patient Controlled Alternatives to the Mental Health System by Judi Chamberlin

    • Principles

    All within the context of a liberation movement for people diagnosed with mental illness, the following examples were some of the principles these groups developed:

  • Against forced treatment
  • Against inhumane treatment—medications, lobotomy, seclusion and restraints, and ECT
  • Sanism
  • Anti-medical model, usually described as anti-psychiatry
  • Emerging concept of consumer/survivor-run alternatives to mental health system
  • Involvement in every aspect of mental health system

    • Transitions—1980s

    The 1980s formed a transitional time:

  • We made major movement decisions that left many of the more purist activists behind.
  • We began the process of reentering the world that had so hurt us.

    • It was a time when new opportunities began, and, not coincidentally, some significant founding endeavors ended. There were indications that many of our goals were beginning to be realized: a transitioning from words to deeds, conceptualizing to implementing.

    Processes:

  • Mainstreaming
  • Centralizing
  • Money from mental health system
  • Collaborations/beginning reentry

    • Activities

  • Growth of mental health system funded first self-help/peer-support programs, early drop-in centers:1983 On Our Own in Baltimore, MD
  • 1985 Berkeley Drop-In Center in Berkeley, CA
  • 1985 Ruby Rogers Drop-In Center in Cambridge, MA
  • 1986 Oakland Independence Support Center in Oakland, CA

    • Federal Government's National Institute of Mental Health (NIMH) Community Support Program began to fund consumer/survivor-run programs:13 consumer/survivor-run demonstration projects funded in 1988

  • Beginning of statewide consumer-run organizations—1983, California Network of Mental Health Clients
  • Discontinuation of Madness Network News and decline of radical groups
  • Discontinuation of Conference on Human Rights and Against Psychiatric Oppression
  • Many mental health system-funded trainings and conferences; first national Alternatives Conference in 1985
  • Rights protection gains/legislation
  • Growth of rights protection organizations—Protection and Advocacy, Inc.
  • Beginning to walk inside; social change from the inside as well as the outside
  • More consumers/survivors sitting on decision-making bodies

    • Fruition of Changes— 1990s and 2000s

    The 1990s marked the fruition of changes that we had sought in the mental health system. Although our basic values remained the same, we rephrased them. Consumer/survivor-run groups, employment, and educational opportunities began to flourish. Attitudes about chronicity began to change to recovery.

    The 2000s have brought an increase of all of the gains of the 1990s. However, advocacy gains have created backlash, and service gains entail compromises: external and internal threats. The consumer/survivor movement itself is becoming more diverse and inclusive and developing a national voice.

    Principles

    The same principles as the earlier days are expressed in positive rather than negative ways:

  • Self determination and choice
  • Rights protections
  • Stigma and discrimination reduction
  • Holistic services
  • Self-help/peer-support programs
  • Involvement in every aspect of mental health system — "Nothing About Us Without Us"
  • Concept of recovery (encompassing all of the above)

    • Activities—1990s

  • Employment in mental health system, as well as self-help programs, including consumers/survivors in mental health management level jobs— Offices of Consumer Affairs
  • Big growth in self-help/peer-support programs with system funding
  • Federal funding of two consumer/survivor-run technical assistance centers to provide technical support for consumers and self-help programs throughout country (in time grew to three centers)
  • Multiple training and learning opportunities
  • Noticeable consumer/survivor involvement at most levels of mental health system
  • Consumer/survivor participation and partnership with other constituency mental health groups
  • Beginning of client-run research, research on self-help/consumer-run programs, and consumer researchers
  • Work with policy makers to legislate and otherwise influence policy
  • Ongoing advocacy gains
  • Described as "decade of recovery" (Bill Anthony, 1993)

    • Activities—2000s

  • All of the activities of 1990s, amplified
  • Incorporation of self-help/peer-support into system, e.g., Recovery/Wellness Centers, peer-support specialists, and medical- funded peer-support
  • Development of mental health services that recognize the significance of trauma and spirituality
  • More diverse and inclusive consumer/survivor movement
  • Creation of National Coalition of Mental Health Consumer/Survivor Organizations, national advocacy voice for consumers/survivors
  • Successful inclusion in the mental health system threatens the loss of our consumer/survivor values
  • Some advocacy losses with push to increase involuntary treatments such as outpatient commitment and "leveraged"

    • System Culture Change

    Evidence of system culture change as a result of consumer/survivor involvement at all levels of mental health system:

  • Consumer/survivor values embedded in Mental Health Services Act, ballot initiative passed into law by CA voters:Voluntary promotion of self-help/peer-support programs
  • Involvement of consumers/survivors at all levels of mental health system
  • Involvement of consumers/survivors as part of and in training of mental health work force
  • Promotion of recovery as a goal

    • SAMHSA's National Consensus Statement on Mental Health Recovery reflects basic consumer/survivor principles.

    Concept of Recovery inspired by and attributed to consumers/survivors:

    "We envision a future when everyone with a mental illness will recover." —Achieving the Promise: Transforming Mental Health Care in America, The President's New Freedom Commission on Mental Health, July 2003"

    Consumers/survivors have initiated new genres of services: Consumer/survivor-run programs and peer-support are essential components of most mental health.

    The scope of our achievements of the past is an indicator of the possibilities for our future.

    Challenge

    We are human beings and we can speak for ourselves. We have a voice and can learn to use it. We have the right to be heard and listened to. We can become self determining. We can take a stand toward what is distressing to us and need not be passive victims of an illness. We can become experts in our own journey of recovery.

    What is the mental health consumer movement? Why is it important to understand its origins? Coinciding with the emergence of other civil rights movements, the consumer movement arose from the need to advocate for changes in the way society viewed and treated people with mental health problems. Early pioneers of the movement overcame multiple barriers and challenges to establish a powerful voice with an enduring message of self-determination and inclusion. Despite the enormous successes of the consumer movement over the last several decades that include a complete re-orientation of the mental health system around the concept of recovery, negative perceptions and attitudes about people with mental health problems are still prevalent. Further, many people are not aware of the impact of the movement on contemporary attitudes or the full range of capabilities offered by people with mental health problems. Discussing the accomplishments of the consumer movement can provide inspiration and hope for consumers and others and spark public awareness of the benefits of social inclusion.

    Over the past 40 years, the national mental health consumer movement has achieved remarkable successes: the growth of rights protection organizations; the establishment of consumer affairs offices in a majority of States; and the recognition of the value of peer-provided services and formalized positions for peers in service-delivery systems. But much remains to be done, including expanding the support and funding for recovery-oriented systems of care and consumer-operated services; increasing opportunities for self-directed care; and ensuring access to and availability of housing, employment, and educational opportunities to guarantee social inclusion for people with mental health problems.

    Goals

    It is both inspirational and amazing that a strong consumer/survivor movement has developed and organized to speak out, influence policy development, and deliver peer support services. Perhaps it will be the energy, determination and vision of consumers/survivors that will bring greater focus and effectiveness to mental health services in the future.

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