News /Zinman: Consumer, survivor movement still evolving after 40 years

The modern consumer movement has experienced great change since its start in the 1970s and is still evolving today, leading to both new opportunities and new challenges, according to long-time mental health activist Sally Zinman.

In describing the history of the consumer movement, Zinman contrasted the grassroots beginnings of the 1970s with the system culture and policy changes brought about in the 2000s.

"In the beginning, everything was without us, about us," Zinman said. "[Powerholders] never would have thought about including a mental patient in decision-making. Now consumers are employed in the mental health system, have two federally funded National Self-Health Clearinghouses, conduct research on self-help and consumer-run programs, and work with policy makers to create new and amend existing legislation."

The movement was born in a time of consumers uniting, finding, and growing their voices out of the anger and hurt bred by an oppressive mental health system, Zinman said. However, the diversity of voices was not nearly as deep as it is today.

"The 1970s was a time of separatism as a means of empowering ourselves," Zinman said. "But even in that time of social change, nearly all participants were Caucasian. Today, in the county where I work, only 25 percent of the staff of the main consumer organization is Caucasian. The movement is now becoming more diverse and inclusive while also developing a national voice."

While widespread participation provides valuable dialogue and an array of differing perspectives, it also brings about unique challenges, according to Zinman.

"Advocacy gains have created some backlash this decade, and service gains have been compromised at times," Zinman said. "The movement is experiencing both external and internal threats from people who either don't want things done or want things done differently."

For example, the issue of funding and treatment has presented a problem in recent years, particularly in an economic climate of high unemployment and decreased funding for public services.

"Now our consumer-run wellness centers may have a psychiatric and medication component, with doctors visiting occasionally," Zinman said. "There is always tension between preserving our values and getting Medicare reimbursements. There may also be certified peer support specialist but this is a different evolution of the drop-in center."

Despite the inevitable challenges that come from social justice movements, Zinman is confident that consumers will continue to make great strides in the future. She is optimistic about the new programs that are constantly developing, such as trauma-informed care and the role of spirituality in our well-being.

"I have faith and hope in transforming the mental health system to what we've always wanted it to be," Zinman said. "When we started, the common thought was we would always get worse. The concept of recovery wasn't on anyone's horizon but ours. I have seen the gains we've made in the past, and based on that, I can only imagine the gains we will make in the future."

Events by decade:

1970s:

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

1980s:

• Growth of mental health system-funded self-help/peer support programs, early drop-in centers
• Federal government, Community Support Program, NIMH, begins to fund consumer/survivor-run programs
• Beginning of statewide consumer-run organizations (1983, California Network of Mental Health Clients)
• Discontinuation of Madness Network News and decline of radical militant groups
• Discontinuation of Conference of 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, e.g. Protection and Advocacy, Inc.
• Beginning to walk inside, social change from the inside as well as the outside
• More clients, consumers sitting on decision-making bodies

1990s:

• Employment in mental health system as well as self-help programs, including consumers/survivors mental health management level jobs (Offices of Consumer Affairs)
• Big growth in self-help/peer support programs with system funding
• Federal funding of two National Self-Help Clearinghouses to provide technical support for the consumers and self-help programs throughout the country
• Multiple training opportunitiesNoticeable consumer involvement at most levels of mental health system
• Consumer participation and partnership with constituency mental health groups
• Beginning of client-run research, research o self-help/consumer programs, and consumer researchers
• Working with policy makers to legislate and otherwise change policy
• Described as "decade of recovery" (Bill Anthony, editorial in 1993)

2000s:

• All activities of 1990s amplified
• Incorporation of self-help/peer support into system, such as Recovery/Wellness Centers, peer support specialists, and MediCal funded self-help
• Development of mental health services that recognize the significance of trauma and spirituality
• Development of new consumer-driven models such as peer-run respite centers and self-directed careMore diverse and inclusive consumer movement
• Creation of National Coalition of Mental Health Consumer/Survivor Organizations, national advocacy voice for consumer/survivors
• Successful inclusion in the mental health system threatens loss of consumer values
• Backlash against advocacy gains in guise of push to increase involuntary treatment such as outpatient commitment and "leveraged treatment"