Monday, June 30, 2008

Harriet McBryde Johnson

"A Life Worth Living":

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."

Read the whole thing.

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