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Tuesday, June 17, 2008

Harriet McBryde Johnson

A little over a week ago, disability rights activist, Harriet McBryde Johnson passed away at age 50.  The New York Times reports,

Harriet McBryde Johnson, a feisty champion of the rights of the disabled who came to prominence after she challenged a Princeton professor’s contention that severely disabled newborns could ethically be euthanized, died on Wednesday at her home in Charleston, S.C. She was 50.

No cause has been determined, her sister, Beth Johnson, said, while pointing out that her sister had been born with a degenerative neuromuscular disease. “She never wanted to know exactly what the diagnosis was,” Beth Johnson said.  The condition did not stop Harriet Johnson from earning a law degree, representing the disabled in court, lobbying legislators and writing books and articles that argued, as she did in The New York Times Magazine in February 2003, “The presence or absence of a disability doesn’t predict quality of life.” . . .

“Her impact came mostly from her writing,” said Laura Hershey, a disability rights activist with several organizations, including Not Dead Yet. “Millions of people by now have read that article, and it was reprinted in her book. Dozens of people who read the article told me, ‘Wow, I never thought about it that way.’ ”  Ms. Johnson’s memoir, “Too Late to Die Young,” was published in 2005. Her novel, “Accidents of Nature,” about a girl with cerebral palsy who had never known another disabled person until she went to camp, was published in 2006.

Born in Laurinburg, N.C., on July 8, 1957, Ms. Johnson was one of five children of David and Ada Johnson. Her parents taught foreign languages at colleges. Besides her parents and her sister, Ms. Johnson is survived by three brothers, Eric, McBryde and Ross.

The fact that her parents could afford hired help was a salient point in another Times Magazine article Ms. Johnson wrote in November 2003, “The Disability Gulag.” Describing institutions where “wheelchair people are lined up, obviously stuck where they’re placed” while “a TV blares, watched by no one,” she called for a major shift from institutionalizing people to publicly financing home care provided by family, friends or neighbors.

“I sometimes dare to dream that the gulag will be gone in a generation or two,” she wrote. “But meanwhile, the lost languish in the gulag.”

Early on, Ms. Johnson was a troublemaker. At 14, at a school for the disabled, her sister said, “Harriet tried to get an abusive teacher fired; the start of her hell raising.” In her memoir, Ms. Johnson describes how, after watching a Jerry Lewis muscular dystrophy telethon while in her teens, she turned against “the charity mentality” and “pity-based tactics.”

Ms. Johnson graduated from Charleston Southern University in 1978, then earned a master’s degree in public administration from the College of Charleston. She graduated from the University of South Carolina School of Law in 1985 and soon went into private practice. . . .

More on Ms. Johnson's life can be found here

http://lawprofessors.typepad.com/healthlawprof_blog/2008/06/harriet-mcbryde.html

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