On January 16, 2010, behavioral health lost one of its fiercest advocates for consumer rights. Judi Chamberlin—who experienced the mental health system during depression treatment—had been fighting chronic pulmonary lung disease, which she chronicled in her blog, Life as a Hospice Patient.
After experiencing the violation of fundamental rights that the mental health system inflicted upon consumers in the mid-20th century, Chamberlin went on to advocate for these rights alongside other ex-patients through protests and the formation of consumer-run mental health services. She co-founded the Mental Patients Liberation Front with her peers in Boston in 1971, a group dedicated to achieving equal rights for both in- and outpatients and reducing the stigma attached to psychiatric disorders.
Chamberlin chronicled her experiences in the state mental health system in her book, On Our Own: Patient-Controlled Alternatives to the Mental Health System, published in 1978. Her direct, audacious challenge to professionals in the field caught the attention of Boston University’s Center for Psychiatric Rehabilitation, which recruited Chamberlin to its advisory board in 1979. Judi Chamberlin. Photo by Tom Olin.
“Judi always denied this, but the reason I asked her to serve on our advisory board is I heard she destroyed grand rounds at one of our teaching hospitals here,” says William Anthony, PhD, Executive Director of the Center for Psychiatric Rehabilitation. “I thought she would certainly bring a different dimension than most of our professional advisors.”
Relations between Chamberlin and her professional colleagues were tense at first, resulting in disagreements between Chamberlin and other staff members at the Center. “Her reputation for confrontation far exceeded who she was. She was so much of a builder and sometimes erroneously perceived as someone who destroyed,” Anthony recalls. “But it was in a constructive way, to make things better. She did that so well.”
“In the early meetings, she was definitely provocative and challenging,” says Marianne Farkas, ScD, Director of the Center for Psychiatric Rehabilitation. “It was definitely kind of a contentious first meeting because she really believed in the empowerment of individuals with psychiatric disabilities.”
Tensions grew as Chamberlin sought common ground with other advisory board members, notably family members of consumers. “They were a very divided lot, the consumer movement and the family movement,” Farkas recalls. “The consumer movement felt patronized by the family members, and family members felt that the consumers were out of control. All of this was playing out at our board meetings and we were trying to learn from both groups.”
Farkas recalls one of Chamberlin’s early concerns: “She would come out of the state hospital and she would have to go to the day center. And in the day center, everything was scheduled according to the institution’s idea of what was important. So every time she came out of the hospital, she’d have to go to cooking class even though she was a gourmet cook.
“She could teach cooking, she could run cooking schools. But they didn’t care about that because she had come out of the psychiatric hospital and was living in a halfway house, and this was part of the deal. You had to have cooking class,” Farkas says. “I always loved that story because it was, for me, the essence of what was wrong with the system at the time. But she was able to make it human and concrete.”
As board members recognized Chamberlin’s innate ability to humanize the efforts of the professional staff at the Center, personal tensions quickly dissolved into close partnerships that would aid the advancement of the consumer movement in the U.S. and the rest of the world.
“Justin Dart, who was the architect of the Americans with Disabilities Act, said to me, ‘The best thing you ever did in your career was making sure Judi had a telephone and a secretary,’” Anthony says. “He’s probably right about that; it gave Judi a mechanism and made it easier for her to get her message out.”
Until her death, Chamberlin served the Center as a Senior Consultant on Survivor Perspectives, traveling the country and the world to spread the knowledge she gained through her experiences and advance the consumer movement. Frequently, Farkas asked Chamberlin to partner with her on international training projects. The two shared their experience and knowledge in countries such as Hungary, Sweden, and France to help improve the state of existing mental health systems and foster the development and growth of national consumer movements. And over that time, says Farkas, “I went from being a representative of professionals and people who don’t understand to being a lifelong friend.”
Farkas also recalls Chamberlin’s other unique personal qualities. “Beside the fact that she was courageous and determined, she was also very innovative,” Farkas says. “She worked in the cross-disability movement, and I don’t know too many other survivors who are doing that. That’s a pretty courageous stance to take because there’s a feeling in the disability community about keeping separate.”
As the end of her life grew nearer, Chamberlin allowed her innovative side to take over once again and planned a celebration of life party in lieu of a funeral.
“Judi actually put it on at BU in August 2009,” Anthony says. “She decided she better have a celebration while she was still around, so she had about 200 of her friends and colleagues from all over the country come.”