Sunday, March 22, 2009

Judi Chamberlin: Still Going Strong

Judi Chamberlin's Wikipedia entry describes her as an "anti-psychiatry activist." If so, hers is a voice of conscience, an influential one that has helped shape both the mental health and disabilities conversations over the last three decades.

Judi was hospitalized against her will in 1966. In her own words, from an article on the National Empowerment Center website:

"Being a patient was the most devastating experience of my life. ... It was clear that my thoughts, feelings, and opinions counted for little. I was presumed not to be able to take care of myself, not to be able to make decisions in my own best interest, and to need mental health professionals to run my life for me. For this total disregard of my wishes and feelings, I was expected to be appreciative and grateful. ..."

Her initial activism focused on the rights of inpatients, but, as hospitals closed, her focus shifted to the needs of outpatients, then she expanded her reach to those with physical disabilities. She has frequently crossed swords with psychiatry, but out of concern for keeping psychiatry honest.

In a debate with E Fuller Torrey MD over the controversial issue of compelling patients with severe mental illness to take meds in certain situations, Ms Chamberlin noted that many people do not choose to be patients and that:

"With regard to outcome, there is little objective evidence that [schizophrenia] is improved by neuroleptic drugs. In fact, there has been little change in outcomes of people diagnosed with serious mental illness over the past 100 years, despite claims that neuroleptic drugs are specific treatments."

In a piece for the blog, Voices of Recovery, she wrote:

"I really believe that it's those of us who were considered the most ill, the most non-compliant, the most trouble, we're the ones who have the fastest track on getting better, because there's always that part of us saying, 'No, no, no. I'm not going to take your vision of what my life is going to be. I'm going to stick to my own vision of what my life is going to be.'"

In 1992, she received the National Council on Disability's Distinguished Service Award of the President of the United States, and helped push a treaty on disability rights that the UN passed in 2006.

Now, at age 64, Judi is in hospice care. She is dying of obstructive pulmonary disease, an incurable lung disease, most commonly caused by cigarettes (she never smoked). For someone largely confined to bed and reliant on oxygen, Judi is amazingly active. In a March 14 blog entry, she chronicled a day spent with fellow advocates and a radio show she participated in, observing that:

"I really enjoyed talking about the issues that I have worked on for so many years, and using the model I have been developing linking how hospice services are delivered with the kind of mental health system we envision."

Hospice care has imbued Judi with new insights, and she's wasting no time in getting out her message. In another blog entry, she notes:

"Again, I can't help contrasting this with the mental health system, where often what people want is very practical stuff, like finding a place to live, and instead they have to jump through all kinds of hoops because someone else decides what's most important. That approach makes the person feel even less in charge of his or her own life."

And in an interview in today's Boston Globe:

"The hospice model puts the patient in the center. What matters is what the patient wants. And then the various people who are the staff - the nurses and social workers and others - are there to support their choices. They're not there to impose their ideas."

In a blog entry from yesterday, Judi observed:

"I don't believe in an afterlife; I think when I die it will just be a return to the same nothingness as before my birth. I believe that the only 'afterlife' is the way one lives on in people's memories, and it has been so gratifying to me to hear from so many people who appreciate the work I've done and the positive effect I've had on their lives. So I feel confident that I will live on in the memories of many, many people, and that thought gives me great comfort."

In the meantime, life goes on. From today's blog entry:

"Ted really enjoyed the casserole, which was as good as I remember. ..."

Check out Judi's blog: Life as a Hospice Patient

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