[D66] Mad Pride

[A.OUT]

Judi Chamberlin, writings took on mental health care
By
J.M. Lawrence
archive.boston.com
4 min
View Original

In 1966 at age 21, Judi Chamberlin was locked in a New York state mental 
ward against her will after the newlywed suffered a miscarriage and 
couldn’t stop crying.

“A depression is something to get rid of and the goal of psychiatry is 
to ’cure’ people of depression,’’ she wrote in a 1978 book that became a 
cornerstone of the “Mad Pride’’ movement among mental health patients. 
“That my depression might be telling me something about my own life was 
a possibility no one considered, including me.’’

Ms. Chamberlin, who wrote “On Our Own: Patient-Controlled Alternatives 
to the Mental Health System,’’ died Saturday at her Arlington home from 
chronic obstructive pulmonary disorder, a lung disease. She was 65.

Described as irreverent and fearless, Ms. Chamberlin’s writings about 
the dehumanizing treatment inside mental hospitals helped galvanize 
patients to become “psychiatric survivors’’ and changed social attitudes 
about their future prospects.

“Her life, her book, her words, her talks were so revolutionary,’’ said 
Dr. Daniel Fisher, executive director of the National Empowerment Center 
in Lawrence, which Ms. Chamberlin helped found.

“The mental health system, for a while, was scared of her because she 
spoke so boldly with no compromise. She would say things that now we 
accept there’s a certain truth to. But back then, it seemed like 
heresy,’’ Fisher said.

Ms. Chamberlin, who was diagnosed as schizophrenic, contended patients 
have the right to make choices about their care, and she argued that 
their using those rights was integral to recovery.

She liked the name “Mad Pride,’’ and her book became the movement’s 
manifesto. “Instead of a pejorative word, they were saying ‘No, we’re 
proud of who we are and so be it,’ ’’ said Robert Whitaker, author of 
“Mad in America,’’ which chronicles the history of America’s treatment 
of the mentally ill.

Ms. Chamberlin, who grew up in Brooklyn, first sought help at a hospital 
but was quickly swept into a series of psychiatric stays. She was 
committed to Rockland Hospital for two months.

“The experience totally demoralized me,’’ she wrote. “I had never 
thought of myself as a particularly strong person, but after 
hospitalization, I was convinced of my own worthlessness. I had been 
told that I could not exist outside of an institution.’’

In an essay called “Confession of a Noncompliant Patient,’’ she said she 
learned to hide her true feelings of despair and anger to win her 
freedom, while she fantasized about former patients evacuating the 
hospital and burning it down. “In my fantasy, we joined hands and danced 
around this bonfire of oppression,’’ she said.

Her first marriage ended after her hospitalization. She eventually found 
recovery in Vancouver at a crisis center run by other mental illness 
sufferers who had won government funding for alternative treatments.

She came to Boston and helped found the Mental Patients’ Liberation 
Front in the early 1970s. The group brought a landmark lawsuit against 
Boston State Hospital. The 1975 case established patients’ rights to 
refuse treatment.

In 1980, Ms. Chamberlin linked arms with other protesters and blocked 
the doors at the American Psychiatric Association Conference in San 
Francisco, said her friend Sally Zinman, who stood with her that night.

Zinman, who lives in Berkeley, Calif., laughed as she remembered how the 
doctors entered the conference through a side door.

“It’s hard to think of her as gone because her influence will keep 
going. She has been so influential in social change that she won’t 
die,’’ said Zinman, who spent 30 years as director of the California 
Network of Mental Health Clients.

Ms. Chamberlin found little help for herself from psychiatric drugs but 
did not oppose medication as a possible path for recovery.

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 at Boston University and was cochairwoman 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 the last year, Ms. Chamberlin battled for the rights of the 
terminally ill to hospice care. She wanted to die at her home surrounded 
by her books and her beloved cats, Gilbert and Oliver, with frequent 
visits from her grandchildren. But UnitedHealthcare cut off her hospice 
benefits at $5,000. 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.’’

By the time the company extended her benefits, Ms. Chamberlin had found 
home care from Visiting Nurse and Community Health of Arlington. She 
chronicled her days on her blog judi-lifeasahospicepatient.blogspot.com.

Her partner, Martin Federman of Cambridge, who met her three years ago, 
also cared for her. “When I first met her, she was still in the peak of 
the work she was doing, and my first impressions were of how incredibly 
focused and committed she was,’’ he said.

On her blog, she wrote lovingly of Federman bringing her meals, 
including her favorite dessert, Junior’s cheesecake from New York City.

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,’’ Whitaker said.

Ms. Chamberlin leaves her daughter, Julie of Boston, and three 
grandchildren. Burial will be private.


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