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Advocate For People With Mental Illnesses Dies

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Advocate For People With Mental Illnesses Dies

Remembrances

Advocate For People With Mental Illnesses Dies

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RENEE MONTAGNE, host:

Judi Chamberlin died over the weekend. She was a leader in a movement that took inspiration from Martin Luther King Jr. and other heroes of the fight for civil rights. Judi Chamberlin helped start something she liked to call Mad Pride, a movement for the rights and dignity of people with mental illness. NPR's Joseph Shapiro reports.

JOSEPH SHAPIRO: In 1966, Judi Chamberlin was 21 years old and seeing her doctor because she was dealing with a deep depression.

Ms. JUDI CHAMBERLIN (Founder, Mad Pride): After a while, he suggested I sign myself into a hospital because I was just not functioning, I was so depressed.

SHAPIRO: That's Chamberlin, telling her story on Madness Radio, a program by people like Chamberlin who call themselves psychiatric survivors.

Ms. CHAMBERLIN: And I just thought, oh, a hospital's a place where you get help. And you know, I'd been in hospitals for surgery and things like that and didn't think of it as having anything to do with your fundamental rights. So I just said, OK, I'll try it, and very quickly found out that once you sign papers to go in on a voluntary basis, but then you can't leave when you want to leave, which was absolutely shocking to me.

SHAPIRO: She got out of that state hospital, she recovered, and she eventually moved to Boston, where she started working with other ex-patients. They called themselves the Mental Patients Liberation Front. David Oaks came to the group in the mid-1970s.

Mr. DAVID OAKS (MindFreedom International): When I arrived at this storefront in Cambridge, Massachusetts, I was a senior Harvard student, had been locked up five times, so I was referred by Harvard to volunteer there. And I walked in, and it was a little, radical, ragtag group, Mental Patients Liberation Front. And Judi was right in the thick of folks - just really warm, community organizer.

SHAPIRO: Oaks now runs his own advocacy group, MindFreedom International.

Mr. OAKS: One thing that she immediately helped teach a lot of people was basic 101 about mental health liberation, that we're equal, that we have rights.

SHAPIRO: In 1978, Chamberlin published a book called "On Our Own." It argued that just the ability to have some say in your own treatment was a key part of making that treatment work.

Chamberlin's book became a manifesto for other patients. But it influenced lots of people in the mental health establishment, too. Today, notes David Oaks, it's common for people with mental illness to have a say.

Mr. OAKS: Most U.S. states now have an Office of Mental Health Consumer Affairs, or something to hear the voice of mental health clients. And it certainly is people like Judi that did that.

Chamberlin traveled the world as an advocate, even in the months before her death. More recently, she faced another illness: lung disease. And when her insurance company said she'd exhausted her hospice benefit, she feared going into a nursing home.

She started a blog about her fight to die at home. Last Saturday, she died as she wished: at home, in her favorite chair, surrounded by friends and family. She was 65.

Joseph Shapiro, NPR News.

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