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Originally appeared in the Good Reading newsletter, June, 2008.

Honoring a Remarkable Modern Advocate

In her New York Times article, “Unspeakable Conversations” attorney, disability advocate, and author Harriet McBryde Johnson wrote, “For those of us with congenital conditions, disability shapes all weare. 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.We have something the world needs.”

Harriet McBryde Johnson 2

Harriet had a congenital neuromuscular disease that led to significant spinal curvature and a very, very thin body. She lived much longer – and achieved a great deal more – than many expected. She died in her sleep after having put in a full day at the office.

Living in Charleston, SC, McBryde Johnson had been chair of the local Democratic Party (yet struggled to gain accessibility commitments at national conventions), and she was a community player as much as a key disability advocate. She was a woman of southern charm capable of fierce honesty, willing to speak truth to power.

Among her targets: The Jerry Lewis Telethon (for failing to convey that the child she was could become the woman she was), eugenics promoter Professor Peter Singer of Princeton University (whom she debated in public on the question of whether she should have been killed as a baby), and anyone who dare claim to judge her quality of life based on her significant impairments.

Her memoir, Too Late to Die Young: Nearly True Tales from a Lifewas published in 2005. The Washington Post reviewed it saying, “With a voice as disarmingly bold, funny, and unsentimental as its author, this is a thoroughly unconventional memoir that shatters the myth of the tragic disabled life.”

I’ve had the honor of meeting and working with many key disability leaders, but sadly, never Harriet – while her name and exploits continually crossed my radar. My work builds on hers, and her life modeled our core message: it’s the person, not the disability that matters, and we musn’t waste the potential we all have to offer.