The History of the Mental Health Consumer/Survivor Movement
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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.1
What is the mental health consumer/survivor movement? Why is it important to understand its origins? Coinciding with the emergence of other civil rights movements, the consumer/survivor 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/survivor 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/survivor movement can provide inspiration and hope for consumers/survivors and others and spark public awareness of the benefits of social inclusion.
Over the past 40 years, the national mental health consumer/survivor 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/survivor-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.
This teleconference provides a context to help consumers/survivors and others understand the origins of the movement, the challenges that members of the movement have encountered and overcome, and the societal advances gained through effective advocacy. This movement set the stage for efforts to support individuals in their personal recovery and to strengthen support for continued systemic change.
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. 2
This training provides:
- a framework for understanding the origins and importance of the consumer/survivor movement, including the role of the arts and social inclusion’s connection to history;
- information about the challenges and obstacles the consumer/survivor movement has encountered and how they have been, and continue to be, overcome; and
- an understanding of the movement’s accomplishments and next steps.
1 Deegan, P. (1996). Recovery as a journey of the heart. Psychiatric Rehabilitation Journal, 19(3), 92
2 Campbell, J. & Leaver, J. (2003). Emerging New Practices in Organized Peer Support, p 1.
Gayle Bluebird, RN
Gayle Bluebird, RN, has been active in the consumer/survivor movement since the early 1970s. She is a peer coordinator for the Office of Technical Assistance (OTA), part of the National Association of State Mental Health Program Directors, in Alexandria, VA. She conducts training at hospitals all over the country, promoting dialogue and communication between providers and service recipients and the development of comfort rooms. She has written and edited two manuals—Participatory Dialogues and Reaching Across With the Arts—with funds from Substance Abuse and Mental Health Services Administration (SAMHSA). In 2006 she produced and edited a film/video entitled “Leaving the Door Open: Alternatives to Seclusion and Restraint,” also for SAMHSA. Most recently she completed Paving New Ground: Peer Roles in Inpatient Settings, a guidebook on developing peer roles that is available through OTA.
As one of the few remaining and active founders of the national mental health consumer/survivor movement, Susan Estelle (Su) Budd has a unique perspective that brings the founding principles of the early days to today’s movement. She has expertise in movement history, organizational development, and peer/mutual support systems. Su has been a consultant to a variety of established mental health organizations and agencies including the National Institute of Mental Health, the Center for Mental Health Services of the Substance Abuse Mental Health Services Administration, State departments of mental health, local mental health centers, consumer/survivor-run organizations, and the Kansas Governor’s Mental Health Planning Council. She is a contributing editor of Reaching Across: Mental Health Clients Helping Each Other. Su is currently the director of the Leadership Academy sponsored by the Kansas Consumer Advisory Council for Adult Mental Health, the statewide consumer/survivor organization in Kansas.
Sally Zinman is a consultant primarily working as a consumer relations specialist with the Office of Consumer Relations, Alameda County (California) Behavioral Health Care Services. Active in the mental health consumer/survivor empowerment movement for over 30 years, she founded the Mental Patients' Rights Association in 1977 in West Palm Beach, Florida, that developed an all-volunteer, client-run community center and shared living space. From 1997 to 2007, Zinman was the executive director of the California Network of Mental Health Clients, a statewide client advocacy organization that she and other clients founded 26 years ago. Zinman’s commitment to the rights of people with mental health problems comes from her own experience in the mental health system. Working for the self-determination, freedom of choice, and empowerment of others who followed her, she has dedicated her life to ensure that what happened to her as a person labeled "mentally ill" would not happen to others. Sally co-edited and wrote articles for Reaching Across: Mental Health Clients Helping Each Other (1986) and Reaching Across II: Maintaining Our Roots/The Challenge of Growth (1994), used throughout the country as manuals for understanding and starting self-help programs.