Judi Chamberlin, one of the founders of the mental patients’ liberation movement, died January 2010 at her Arlington, MA home from chronic obstructive pulmonary disorder, a lung disease, at the age of 65.
Ms. Chamberlin wrote On Our Own: Patient-Controlled Alternatives to the Mental Health System, which chronicled her own dehumanizing experience as a patient in mental hospitals in New York. She contended that patients have the right to make choices about their care, and she argued that their using those rights was integral to recovery. When she moved to Boston in the 1970s, she helped found the Mental patients’ Liberation Front. The group brought a landmark lawsuit against Boston State Hospital. The1975 case established patients’ rights to refuse treatment. In 1985, she helped found the Ruby Rogers Advocacy & Drop-in Center in Somerville, which is run by nonprofessional staff who have had mental health issues. She also worked on projects with the Center for Psychiatric Rehabilitation of Boston University and was co-chairwoman of the World Network of Users and Survivors of Psychiatry from 2001-2004. In 2004, she was named to a panel advising the United Nations on disabilities.
In her last year, Ms. Chamberlin chose to live at home with hospice care rather than going to a hospital. She battled for the rights of the terminally ill to hospice care. The insurance company United Healthcare cut her hospice benefits at $5,000 and she appealed. “Although I apparently haven’t died fast enough,” she wrote on one form, “I do have a terminal illness and will need some method of care.” After an article about her appeared in the Boston Globe, she won her appeal.
She did not want a memorial service. Instead, scores of people lined up for a chance to praise her work at a celebration of her life held at Boston University in August. Ms. Chamberlin, who was in a wheelchair, took the microphone and issued a call for the rights of hospice patients to care. “Even at this last second of her life, she was fighting for change, and it was an absolutely beautiful moment,’’ said Robert Whitaker, author of Mad in America, which chronicles the history of America’s treatment of the mentally ill.
She is survived by her daughter Julie, of Boston, and three grandchildren.
An interview with Ms. Chamberlin by Betty Reid Mandell was published in New Politics, Winter 2010.