Harriet McBryde Johnson

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Christine Rosen has a worthwhile tribute to the recently deceased disability-rights advocate in today's WSJ:

When Harriet McBryde Johnson died earlier this month at the age of 50 from a congenital neuromuscular disease, obituaries called her a "disability-rights activist." This is far too narrow a description of her life. She was less a traditional activist than an acute social conscience. Ms. Johnson forced us to look at disability in a different way -- not as something that we should seek to eradicate, but as something that is integral to the human condition, a "natural part of the human experience," as the American Association of People With Disabilities puts it.

Ms. Johnson, a lawyer, first earned national attention when she debated philosopher Peter Singer at Princeton University in 2003, an experience she wrote about for the New York Times Magazine. Thankfully free of the ponderous cant that infects so much of bioethics, she was brutally direct when she talked about disabilities, including her own. "Most people don't know how to look at me," she wrote, describing her severely twisted spine and her "jumble of bones in a floppy bag of skin." But she abhorred the "veneer of beneficence" that overlay the arguments of those who said she would be "better off" without her disability. "The presence or absence of a disability doesn't predict quality of life," she argued, challenging Mr. Singer's support of what she called "disability-based infanticide."...

Although they never formed formal alliances (and Not Dead Yet takes no position on prebirth issues, such as genetic selection), Ms. Johnson and her fellow activists often found themselves on the same side of the ramparts as conservative Christians: Not Dead Yet marshaled the support of 25 national disability groups to oppose the attempts of Terry Schiavo's husband to "starve and dehydrate her to death," for example, and defended congressional efforts to intervene in the case. As Diane Coleman, president of Not Dead Yet, told a group in Tampa, Fla., during the Schiavo controversy: "Surely, it will not be argued that the National Spinal Cord Injury Association, the National Down Syndrome Congress, the Disability Rights Education and Defense Fund and all the rest are now or ever have been puppets of religious conservatives." Indeed, Ms. Johnson, an atheist, once chastised Mr. Singer for describing his enemies as a monolith of religious faithful focused solely on "the sanctity of human life."...

In many ways, the truths that Ms. Johnson forced us to confront are easier to dismiss when they come from so-called right-wing religious nuts. Ms. Johnson, with her experience of disability and her commitment to liberal principles, made people far more uncomfortable. Her critique challenged our cultural assumptions about disability. How accepting are we, really, of those who are not able-bodied? "The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist," she wrote. "My fight has been for accommodation, the world to me and me to the world." Yet, despite the lip service we pay to "accommodation" (and the genuine good that comes from legislation such as the Americans With Disabilities Act), we now find ourselves in a disturbing situation: As our scientific powers to eliminate disability grow, our acceptance of disability wanes.

Do read the whole thing, and here is Johnson's NYT Magazine write-up, mentioned by Rosen, of her encounter with Singer .

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This page contains a single entry by Papa-Lu published on June 27, 2008 11:16 AM.

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