Thursday, June 12, 2008

Voluntary Self-Commitment

I caught this editorial this morning and was saddened to hear that Harriet McBryde Johnson passed away June 4, 2008. She was a woman who wrote extensively about the parallel worlds created by the abled for those who are labeled disabled.

Harriet's words provided inspiration for me when I was feeling gloomy about the future prospects for my daughter. I would re-read her articles and book for strength and inspiration to refocus on whatever the issue was at hand.

Most of the time, it was her words I would cling to when I felt I was losing my grip on reality over the changes in legislation and how it would impact my daughter's future. Or how it wouldn't affect her at all.

If you click on the title above, you'll be linked to the "Disability Gulag" article she wrote advocating for home health care instead of institutionalizing people through "voluntary self-commitment" which is the catch 22 of all time.

Here is the editorial as it was printed in the New York Times today:

A Life of Quality

Published: June 12, 2008

In “Parting the Waters,” his history of the early civil-rights movement, Taylor Branch recounts how a teacher of Gandhian resistance, James Lawson, would tell his students not to curl passively into fetal balls when segregationists came to beat them up. It only made them more brutal.

“This was a way to get livers kicked in and backs broken, he said, recommending that resisters try to maintain eye contact with those beating them.”

I thought of that when I learned of the death of Harriet McBryde Johnson, who looked at the world with an unflinching, sometimes withering, gaze. What many saw when they looked at her was a scrawny woman with a twisted spine who got around with a power wheelchair and lots of help. What she saw was a world that refused to make room for the severely disabled, one that looked at people like her — if it looked at them at all — with horror, hostility, condescension and pity, a sentiment she hated.

Ms. Johnson, a lawyer who was 50, died on June 4. She was an eloquent defender of the rights of the disabled. She came to wide attention through The New York Times Magazine, in essays she wrote about her confrontations with the philosopher Peter Singer over his defense of killing disabled infants at birth.

Ms. Johnson, an atheist, was unmoved by religious appeals to life’s sanctity. Instead, her rebuttal boiled down to a simple: How dare you? How dare you decide that certain people with limitations are nonpersons with no right to exist? How dare you presume to define “quality of life,” for me or anyone else, to set the value of a disabled life lower than yours, or to conclude that such a life lacks the potential for happiness and dignity because you cannot imagine how it could?

The disabled certainly suffer. But everyone does, Ms. Johnson argued, and if the disabled face extra hassles and indignities in life, well, remedies for those things are all possible, and should be provided. Instead, the world is run by and for the nondisabled, and those who don’t measure up are infantilized, ignored and stockpiled in institutions that Ms. Johnson called “the disability gulag.” She feared being sent to it in her later years.

Ms. Johnson was enraged by injustice, but not susceptible to hatred or despair. To her, Mr. Singer was a monster, but she realized that the unenlightened also included many of her own friends, colleagues and relatives. She decided that “it’s not in my heart to deny every single one of them, categorically, my affection and my love.”

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