Harriet McBryde Johnson

From Philosopedia

Harriet McBryde Johnson (8 July 1957 - 4 June 2008)

Johnson, an attorney and disability rights activist, was born in eastern North Carolina and lived most of her life in Charleston, South Carolina.

Because of a neuromuscular disease, she used a motorized wheelchair but practiced law and wrote in numerous publications about her work and condition.

When Pete Singer in 2002 expressed the view that parents ought to have the right to euthanize their disabled children, she challenged him in a debate and wrote Unspeakable Conversations about her opposite viewpoint.

As chairwoman of the Charleston County Democratic Party, she sided with Congress during the Terri Schiavo case, in which the subject of how to deal with individuals who have been diagnosed with being in a persistent vegetative state (PVS).

She opposed Jerry Lewis, whose annual muscular dystrophy telethon raised money. She objected to the program's commercials, for example of a young boy who died from the disease and keft his toy soldiers "without a general." Lewis then went on record with the Chicago Tribune, saying he disagreed with her. He would find meeting her, he exclaimed, as being like meeting to make peace with Hezbollah or Iraq insurgents in Iraq. She called his telethon as based on "the charity mentality," objecting to its "pity-based tactics."

In 2003 Johnson was named Person of the Year by New Mobility, a magazine for active wheelchair users. She commuted to court at high speed in her motorized vehicle, observers noticed. In "Unspeakable Conversations," she wrote,

I used to try to explain that in fact I enjoy my life, and it's a great sensual pleasure to zoom by power chair on those delicious muggy streets, that I have no more reason to kill myself than most people. But it gets tedious. God didn't put me on this street to provide disability awareness training to the likes of them. In fact, no god put anyone anywhere for any reason, if you want to know.

She described herself, according to the Charleston Post & Courier as a "disabled, liberal, atheistic Democrat."

Johnson died in her sleep at home on June 4, 2008.

Her obituary in The New York Times included the following:

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.

Published Works

"Return to Cuba," (New Mobility, May 1998)

"Power Dressing," (New Mobility", December 1998)

"A Celebration for the Day of the Dead," (New Mobility, October 1999)

"Conventional Wisdom," (New Mobility, September 2000)

"Unspeakable Conversations," The New York Times, 16 February 2003)

"The Disability Gulag," The New York Times,November 2003)

"Stairway to Justice," The New York Times, May 2004)

"Not Dead at All: Why Congress was Right to Stick up for Terri Schiavo, Slate, March 2005)

"Schiavo’s Disability Rights," npr, March 2005)

"Overlooked in the Shadows," washingtonpost.com,March 2005)

Harriet McBryde Johnson, Too Late to Die Young: Nearly True Stories From a Life, (2005)

"Wheelchair Unbound," The New York Times, April 2006)

Harriet McBryde Johnson, Accidents of Nature (2006)

"Alas for Tiny Tim, He Became a Christmas Cliché," The New York Times, December 25, 2006)

"13 Questions," BBC Ouch!, May 2008)