American mental health advocate/activist Judi Chamberlin was a powerhouse, a beacon in the fight for equal rights for people with mental illnesses. A psychiatric survivor, she was considered the "grandmother of the mad pride movement."
She died peacefully, at 65, on Saturday in her Arlington, Massachusetts home after a long fight with lung disease.
For the last two years, Judi was a hospice patient, living with Chronic Obstructive Pulmonary Disease (COPD) for which she never had any risk factors. She never smoked.
She discussed her medical history candidly on her blog, Life as a Hospice Patient, where she wrote courageously and with brutal honesty, giving a voice to a group of people you rarely hear from – people who are dying in hospice care.
Yet despite her illness, Judi lived out loud every moment of her life and never stopped fighting for people's civil rights, especially people with mental illnesses. That was her fight.
Notice of her death will not be carried in the mainstream press. This is a tragedy. She left her mark on the American mental health care scene and touched the lives of people with mental illnesses around the world.
Her obituary is posted on the NPR website where you can also listen to a short radio version. You can also hear Will Hall's 2006 in-depth interview with her on Madness Radio.
Her book, On Our Own, was published in the U.S. in 1978 (later in England and in Italy) where it is considered a manifesto by people with mental illnesses fighting to be treated in hospitals and by health care professionals with the same dignity and humanity as people with physical illnesses.
Judi was a founding member of the National Empowerment Center and was a Senior Consultant on Survivor Perspectives at the Boston University Center for Psychiatric Rehabilitation.
She was originally treated in a state mental hospital for depression in 1966.
"Very quickly, (I) 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," she said, according to the NPR obituary.
"She got out of that state hospital and moved to Vancouver, British Columbia, where she lived with other people who'd been diagnosed with mental illnesses but who'd then gotten government money to develop their own treatments.
After recovering, she moved to Boston and started working with other former American psychiatric patients who "wanted to change the system." In many ways, she did.
She published widely, travelled far and inspired hope in people all over the world.
I'm sorry I never met her.
Wow, what an amazing woman. To write from hospice must have taken great commitment to reaching others. Thank you for pointing me to Judi Chamberlain's blog. I look forward to exploring it, and appreciate the background information your post provides.
Posted by: WillSpirit | January 19, 2010 at 07:54 PM
Hi Will,
Judi not only wrote while in hospice care, she campaigned for the rights of hospice patients to be able to live and die at home and receive the funding and supports they need to be able to do so.
You're right. She was an amazing woman. Remarkable. She helped to further the modern recovery movement which is founded on principles of self-determination and peer support. There were other tangential influences, but she was definitely one of them.
Google her and read about her. I barely scraped the surface.
Thank you for your comment.
Speak soon.
sln
Posted by: Sandy Naiman | January 20, 2010 at 09:00 AM