Sunday, January 17, 2010

Judi Chamberlin - Requiem for a Hero

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."

Judi Chamberlin belonged to a generation of antipsychiatrists who got in the face of psychiatry and changed it. Equally, she helped shake patients out of their fatalistic mindset to one of feeling empowered. In early Dec 2008, Judi established a blog, Life as a Hospice Patient. She was dying of COPD (she never smoked). Now she had a new cause to fight for - the right to die in accord with her simple wishes. But her fight was never her own fight. It was always our fight as well.

Judi’s initial activism focused on the rights of psychiatric inpatients, but, as hospitals closed, her focus shifted to the needs of outpatients, then she expanded her reach to those with physical disabilities. 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.

Hospice care imbued Judi with new insights. In one blog entry, she noted:

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.

In another piece, she 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.

On Jan 12, she wrote:

Marty should be home soon, and he said he is bringing me all kinds of goodies from the Jewish deli and grocery store in Brookline, which is right near the hospital. I'm glad I have my appetite back! I've eaten soup and ice cream and cookies, and I'm eager to see what he's bringing me for dinner.

Those were Judi’s last public words. She died last night. She left behind a family and no end of friends and admirers. She was 65.

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