Facing death, a plea for the dignity of psychiatric patients
From the Boston Globe
by Carey Goldberg
Sunday, March 22, 2009
“NOTHING ABOUT US Without Us.”
That is the motto of a grass-roots movement that has carried various names over the last generation, but has always revolved around a single principle: self-determination for people diagnosed with mental illness. Call them psychiatric patients or consumers or survivors, they are fighting together to gain more control over their treatment, and more say in the mental health system overall. And they have won some striking successes in recent years, gaining more input into official policy and creating new jobs for people who, 12-step-style, have recovered from the worst of their illness and now want to help others in crisis.
The mother of that movement, many people would say, is Judi Chamberlin of Arlington.
Chamberlin was hospitalized against her will for depression in 1966, and shocked by how she was treated. Her seminal book, “On Our Own: Patient-Controlled Alternatives to the Mental Health System,” came out in 1978, and became a manifesto for the movement. Chamberlin’s activism for patients’ rights spanned the next 31 years, and evolved with the history of mental health treatment in this country.
At first, in a system that relied heavily on state hospitals, she focused largely on protecting inpatients’ basic rights. As “deinstitutionalization” took hold and the hospitals emptied, she focused more on outpatients’ needs for services and dignity as well. She also joined forces with activists for people with physical disabilities, and extended her reach internationally, helping push a treaty on disability rights that the United Nations passed in 2006.