Overwhelmingly sad news today: Harriet McBryde Johnson has died at age 50.
Image description: The photo shows Johnson in a flowered-print navy dress looking toward the camera. She sits in her wheelchair, though the image is a close-up focusing on her and not the chair. Johnson leans forward, right elbow on knee, chin in right hand. She’s a middle-aged white woman with dark hair in a very long braid trailing over her shoulder and into her lap. She’s not quite smiling, but looking interestedly back at you.
The Post and Courier of Charleston, SC, provides a preliminary notice, with a more formal obituary expected soon (the NYT will have something too, I hear):
Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.
“She worked yesterday. It’s a shock to everybody,” said friend and attorney Susan Dunn.
She was born July 8, 1957, and had been a Charleston resident since age 10.
She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live. . . .
Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to “the charity mentality” and “pity-based tactics” of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.
The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, “I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”
Some of Johnson’s writings:
Unspeakable Conversations in The New York Times, February 16, 2003 — The magazine cover story featuring her debate with Peter Singer on disability and personhood.
The Disability Gulag in the NYT, November 23, 2003 — On escaping the institutionalization that threatens so many disabled people.
As New Mobility‘s Person of the Year in 2004, article by disability activist Mike Ervin
The Way We Live Now: Stairway to Justice in the NYT, May 30, 2004 — On the U.S. Supreme Court ruling on Tennessee v. Lane.
Overlooked in the Shadows in the Washington Post, March 25, 2005 — Harriet on Terri Schiavo. (Same article also published at Slate and in audio at NPR)
Too Late To Die Young: Nearly True Tales From a Life, her memoir, published in 2005. Reviewed by Ragged Edge, excerpted in AARP Magazine, and included in a roundup of memoirs by disabled women at Disability World.
Accidents of Nature, her youth fiction book about a sheltered 17-year old girl with cerebral palsy who attends a summer “Crip Camp” and confronts how her physical differences and the accompanying ableism affect her interactions in the world. She and a friend also confront the ableism itself.
Speaking on video about Medical Ethics at Insights TV for the United States Holocaust Memorial Museum. The first section at the link is “Perspectives on Antisemitism,” with Harriet McBryde Johnson directly below as part of the “Medical Ethics” section. Clicking on the link by Harriet’s photo and below the headline introducing her brings a pop-up window that includes a full transcript. Here’s the direct link to that window and transcript.
Wheelchair Unbound in the NYT, April 23, 2006 — Johnson writes about speaking at the U.S. Holocaust Memorial Museum.
Alas for Tiny Tim, He Became a Christmas Cliché in the NYT, December 25, 2006
A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon at disability activist Laura Hershey’s site Crip Commentary
13 Questions at BBC’s Ouch! on May 12, 2008
The Gimp Parade has an index label just for Johnson, and Barry has discussed her writing a number of times at Alas, A Blog.
More links posted as available.
Update: There are links to blog tributes in the comments below, as well as this more complete (and more ableist in language) obit in the Charleston Post and Courier.
Friends of Johnson have created this website dedicated to her life and memory.
Cross-posted at The Gimp Parade
Oh, so sad. I loved her writing. That Peter Singer thing was killer. One of the great ones is gone.
How did I miss this woman’s writing when she was alive!??? (well, most of it – I have vague recollections of reading the Slate article)
The Singer thing is, indeed, awesome. Yeah, I had to read Singer in college.
A sad day indeed.
Normally, I’d be thinking something like “good thing she died before she became unable to communicate”, and got to bow out before losing what little she had left… but in her case, I think she’d have rather lived longer anyways.
I suppose I’ll have to rethink that mentality.
Harriet Johnson was an incredible warrior, a brilliant attorney and a gifted writer. She always made us think differently about disability issues and exposed our prejudices with wonderful Southern charm and wit. She will be missed.
She’s done some fantastic work in her day, both for rights and recognition. Sad as it sounds I hope that her passing leads to more people following links like those above and extends the benefits of her work beyond today.
You’ll be missed Ms Johnson, hopefully even by those that didn’t know of you before today.
Silence is foo said: Normally, I’d be thinking something like “good thing she died before she became unable to communicate”, and got to bow out before losing what little she had left… but in her case, I think she’d have rather lived longer anyways.
I suppose I’ll have to rethink that mentality.
If there is one thing Johnson stood for, it was the embodiment of the need for people to rethink that mentality. And not just in her case.
She won’t be forgotten. The work she did will continue to help the rest of us who are still here.
Rest in peace, dear Harriet!
I’ve regularly taught her “Unspeakable Conversations” in college philosophy classes. Her work and her writing was amazing. This is very sad news. She was wonderful.
I had the honor of driving Harriet around for most of her errands in the last year, and the truth be told, she did worry about not being able to communicate. She said she made her living with her voice, and wondered what she’d do without it. And on the lighter side, she hoped she’d never have to wear a pair of glasses. But she had so, so much left, and I guess I thought since she made it this far, she was going to just keep going. I miss her already.
Kelly, I’m really sorry for your loss.
The Post and Courier has posted a fuller obituary online now. Nothing from the Times yet.
She was an incredible woman, and the writer of some of the best nonfiction I’ve ever read. This is a terrible loss for her family and friends, and also for anyone who cares about disabled rights, or about good writing.
More blogging on Johnson today:
Media Dis&Dat
Disabled Soapbox
Not Dead Yet.
Disaboom.
Cripchick
F.R.I.D.A.
Beyond Chron
I realize that, for people who knew her better, this is a terrible tragedy… but if you look at the achievements of her life, it’s hard not to be proud of the society we live in today.
50 years is far too short a life, particularly for a woman as gifted as her… but she lived a full and successful life, and one of decent length. It wasn’t too long ago that neither of those things would be possible for someone with her level of disability. Obviously, there is a hell of a lot more to do in terms of acquiring and protecting rights and support for the disabled… but when you see somebody like that, you have to be impressed with what’s been done so far.
50 years is a pretty damned good, given the circumstances.
The world is better for her having lived her life as she did.
Ah, damn. What a loss to all of us.
if anyone gets some time, there is an amazing cspan interview with harriet. everything she says in it is beautiful, funny, and so insightful.
http://www.c-spanarchives.org/library/index.php?main_page=product_video_info&products_id=191646-1&showVid=true
while I was reading some of Hariette Johnson’s beautiful words last night I was not only appreciating her writing and eloquence, but I was also appreciating this blog for introducing me to so many wonderful people I was ignorant of . . . Harriet McBryde Johnson, Jill Bolte Taylor , Mildred Loving, and more.
So . . . Thank you all! you enrich my life.
Thanks for the link farm, Kay (and Amp). A great resource on a sad day.
It was her writing that really changed my thinking about end of life issues. My views are much more subtle and humble than they used to be, and her writing really helped guide me there. Pretty damned insignificant on the list of ways she made the world a better place, but I appreciated it.
Harriet will be remembered. In every heart she touched, in every life she changed, in every thought she inspired, her love lives on. In remembrance of what an incredible person she was.
Harriett and I served on the Board of Directors for Protection and Advocacy here in S.C. I was utterly stunned and terribly saddened by her passing. Nevertheless, I celebrate her life and accomplishments, a life lived on her own terms, and in the manner she dictated. While a mighty voice has been silenced, I have a feeling she left this earth also on her own terms. As far as I know, she left with only one goal unaccomplished — to outlive Jerry Lewis!
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She was my aunt and she was a beatifully talented and brilliant person. For those of you who knew you understand what I mean when I say she was stronger than anyone I know. She stood up to every challenge she faced and she knew exactly how to make a whole group of people smile. Always the entertainer, she was filled with stories and jokes. She helped many people in different ways ranging from bringing a smile to their face or demanding wheelchair access to buildings in the Charleston area. She will be missed so much. Thank you to all of you who have left such kind comments.
I found Harriet McBryde Johnson soon after my own grandson was born with a major heart situation. I hate the word “defect”. Just as Ms. Johnson was appalled by how kids appeared on Jerry Lewis’s telethon, I wonder how my grandson feels when he hears that he has a heart “defect”. “Does that mean that I am defective, like an appliance that must be sent back?”, he might think.
His mother, while studying to become a nurse, used Ms. Johnson’s article about her meeting with Peter Singer as the basis for an essay written for one of her nursing courses. Ms. Johnson, you are still with us.
can anyone tell me the specific neuromuscular disease she had? My daughter has Friedreich’s Ataxia. this disease sound slightly similar. i was wondering if that’s what Harriet was diagnosed with. thanks. Fran