Harriet Johnson, 50, Activist for Disabled, Is Dead
John R. Polito, 2007
Harriet McBryde Johnson
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.”
Using a battery-powered wheelchair in which she loved to “zoom around” the streets of Charleston, Ms. Johnson playfully referred to herself as “a bedpan crip” and “a jumble of bones in a floppy bag of skin.”
Rolling into an auditorium at the College of Charleston on April 22, 2001, Ms. Johnson went to the microphone during a question-and-answer session to confront Peter Singer, a philosopher from Princeton, who was giving a lecture titled “Rethinking Life and Death.”
Professor Singer had drawn protests by insisting that suffering should be relieved without regard to species. That, he said, allows parents and doctors to kill newborns with drastic disabilities, like the absence of higher brain function or an incompletely formed spine, instead of letting “nature take its course.”
In Professor Singer’s view, infants, like other animals, are neither rational nor self-conscious.
“Since their species is not relevant to their moral status,” he said, “the principles that govern the wrongness of killing nonhuman animals who are sentient but not rational or self-conscious must apply here, too.”
Ms. Johnson had been sent to the lecture by Not Dead Yet, a national disability-rights organization. Describing the event in The Times, she wrote: “To Singer, it’s pretty simple: disability makes a person ‘worse off.’ Are we ‘worse off’? I don’t think so.”
She added: “We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.”
An e-mail exchange followed that encounter in Charleston, leading to an invitation to debate Professor Singer at Princeton on March 25, 2002. Their two encounters were the subject of the 8,000-word Times article, which brought Ms. Johnson considerable attention in the disability rights movement and from the general public.
“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.
Humor laced her writing. The “crippled children’s school” she attended as a teenager, she wrote in a Times Op-Ed article in December 2006, once considered staging a play based on Charles Dickens’s “A Christmas Carol.” But who would be Tiny Tim?
Ms. Johnson quoted directly from the Dickens book: “Alas for Tiny Tim, he bore a little crutch, and had his limbs supported by an iron frame!”
“Alas!” Ms. Johnson exclaimed. “A little crutch! An iron frame! In our world, the crutch-and-brace kids were the athletic elite. They picked up the stuff we hard-core crips dropped.”
Some thoughts-- the NYT is still clinging to that expression -- 'the disabled.' When are they going to get it?
Also, why are three paragraphs in her obit about Peter Singer? Huh?