I’m participating in something called “Partners in Policymaking.” It’s a training program, and I can’t describe it any better than it describes itself: “Wisconsin Partners in Policymaking is a six-session advocacy and systems change training program designed to develop a group of future leaders across the state, who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life.”
Um, okay. I guess I’ll try to be a future leader <she says sheepishly>. It seems like a tall order for an under-achieving dropout like me. But I’m fifty years old, so maybe it’s finally time to make something of my life. I’ve got some big ideas on stuff I’d like to accomplish in this arena; but as Anthony says, “we’ll see.”
He means, I always have big ideas. It’s a question of whether I follow through.
Our first assignment for the Partners training was to learn and write a page about a disability leader. I chose Judi Chamberlin from the list we were given, because she was an advocate on the mental health front. This is the battle Jesse faces in the years ahead. I did some research, read about Judi’s life and work… And then felt even more like an underachiever.
Being an underachiever, I figure I can double dip — not only have I written my assignment for the Partners training, but it can double as today’s post. So here’s what I wrote (with some personal annotations in brackets). Just about every paragraph begins with “Ms. Chamberlin,” but I’m not sure how to fix that. This is, after all, about her. May this brief and shallow outline of Judi Chamberlin’s life inspire you, as my research about her activism has inspired me:
In 1966 [the year I was born!] Judy Chamberlin, then in her early 20’s, voluntarily checked into a psychiatric facility for severe depression. After several voluntary hospitalizations, she was diagnosed with schizophrenia and confined against her will for five months. She quickly learned that she had no legal rights as a psychiatric patient, and she witnessed many abuses. [When we checked Jesse in to Rogers hospital for intensive out-patient therapy, we were required to sign a ton of documents, including one that gave Rogers the authority to hospitalize Jesse without parental consent if they deemed it appropriate, and to medicate her without parental consent if she was so hospitalized! In 2016! A condition of outpatient treatment! Imagine! At the time, we signed it. I still don’t know why. We should have said no. Anyway, back to Judi:]
After Ms. Chamberlin was discharged, she moved for a time to Canada, where she observed people with mental illness participating in a self-directed care model, using funds provided by the government. When she returned to the United States, she joined the still-developing psychiatric patients rights movement and became a fearless, passionate advocate for self-determination, working to end human rights violations within the mental health system and to create survivor-based, non-coercive treatment and support systems.
Ms. Chamberlin was a founder of the Ruby Rogers Advocacy and Drop-In Centers — self-help centers staffed by former psychiatric patients. She was a founder of the National Empowerment Center, also run by and for survivors in pursuit of recovery, empowerment, and hope. Ms. Chamberlin was a leading influence in the Mad Pride movement, which seeks to reclaim terms like “mad” and “psycho” from mis-use. [So I’m not alone in wanting to own these words — I’m still partial to “Crazy Nation.”] In the 1990’s, Ms. Chamberlin joined the board of MindFreedom International, a coalition of grassroots organizations advocating to end human rights violations against and coercive treatment of psychiatric patients, including forced hospitalization and medication, restraints, seclusion, and electro-shock therapy. From 2001-2004, Ms. Chamberlin served as co-chair of the World Network of Users and Survivors of Psychiatry.
Ms. Chamberlin wrote a great deal during her decades of activism. In 1978, she published “On Our Own: Patient-Controlled Alternatives to the Mental Health System.” In it, she spoke of the importance of self-determination and self-direction in treatment. The book has become a seminal text in the development of the survivor movement. Among other things, Ms. Chamberlin coined the term “mentalism,” to describe discrimination and oppression of individuals because of a real or perceived mental trait or condition. She challenged the negative assumptions faced by psychiatric survivors — incompetence, helplessness, unpredictability, and violence — and the patterns of treatment arising out of these assumptions. [The term hasn’t come into general use. Some things I read suggest it’s been crowded out by the idea of “stigma.” But stigma is about societal attitudes, while I think Chamberlin was trying to get at something more institutionalized with her use of the term.]
Ms. Chamberlin participated in drafting the National Council on Disability’s federal report, “From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves.” Published in 2000, the report focused on the continuing plight of psychiatric consumers. The cover letter from the NCD captured a fundamental ideal underlying Ms. Chamberlin’s lifetime of work: “We look forward to the day when the label of psychiatric disability has no more effect on people’s rights than does the existence of any other disability label. Until that day, NCD believes that people with psychiatric disabilities will remain among the most underprivileged and disadvantaged of American citizens.” [This is really intense food for thought. I need to ponder for a long time.]
Ms. Chamberlin never stopped being an advocate. Even her journey to death provided her with opportunities to continue her activism for self-determination. She became a staunch advocate for the patient-centered model of hospice care; and she herself died at home with the aid of hospice care, surrounded by friends.
[I hope I can go out in style like that too. Way to bring it in strong, Ms. Chamberlin.]