Charleston, S.C., attorney, advocate and author Harriet McBryde Johnson died in her sleep on the morning of June 4. Through her writings and books, Harriet has gathered an audience that reaches far beyond her beloved Charleston and our own small, often insular disability community. It will be years before we really understand all we lost when we lost Harriet. We are just now beginning to understand what we’ve gained by having her for as long as we did.
Following are personal tributes to Harriet that represent the breadth of the people touched by her life and her work — from her sister, Beth Ross Johnson, to the man considered by many to be her greatest adversary, ethics professor Peter Singer.
When Harriet was about 10, there was a plan to have her spine fused. At that time she would have gone to the hospital for several months and I would not be able to see her during that time. I stood at the top of the stairs as she was getting ready to go, knowing I should come down and say good-bye and dreading it. I heard someone say to call Beth to say goodbye, and then Harriet said not to make me. As she was bundled off, I was so grateful to her for knowing how hard that would have been for me.
The doctors decided she was too fragile to survive the operation, so she was sent home after a few days. I didn’t get to say goodbye to her this time, either, although I am a lot braver now.
She once told me that the thing she was most concerned about when she died was the crap people would say about her. After reading some of the blogs and comments about her death, I’ve been very moved in the positive way she affected people. But the comments are there about how she can now run and skip through the meadows of heaven. Harriet didn’t share a belief in the afterlife, but we all know that if confronted with a heavenly meadow type situation, Harriet would refuse to scamper as a matter of principal.
I was two years older than Harriet and Harriet had a theory that individuals raised with a disabled sibling come close to understanding what it is like. I heard the pitiful remarks people made about her and I watched the [Jerry Lewis MDA] Telethon, too. But after I finished reading the first draft of her book Accidents of Nature, I had to sit down and have a good cry. So that’s what it is like. Harriet had a way of not just telling a good story, but forcing people to see through her eyes.
She left very little unsaid, and that’s not a joke about her gift and love of gab. Any idea, opinion, or story was written down and e-mailed off. There are no half-finished manuscripts or essays lying about, and in that respect her death seems more like an ending, and not an interruption.
Harriet left me her alexandrite ring and earrings. Not knowing my gems, it took me a while to figure out which ones they were. The examples I Googled had them in a range of colors. I was further confused by the fact that the gems themselves change color depending on the light they are in. Her last gift to me are the jewels she wore on the cover of the New York Times Magazine.
Now what on earth should I do with the Frida Kahlo paper dolls I got her for her birthday?
— Beth Ross Johnson, Harriet’s sister
In 1992 our Jerry’s Orphans’ Telethon protests were big national news: Primetime, the Today Show, Vanity Fair, even the National Enquirer. We got a letter from a woman in South Carolina — long before the Internet craze. Her name was Harriet, she said she had muscular dystrophy, too, and she agreed enthusiastically with the central message of Jerry’s Orphans, that Jerry Lewis is a jackass.
A few months later, Harriet and I, like Bonnie and Clyde, walked into an ambush: an NBC studio in New York City. We were guests on a daytime talk show hosted by a blond woman named Faith Something. It was Harriet and I versus a doctor and some guy in a wheelchair who thought Jerry belonged on Mount Rushmore. Faith Something gave us a pretty good grilling. She said we were ungrateful. The doctor and the Jerry groupie agreed — and besides that we were selfish for trying to sabotage little crippled children. The audience pretty much agreed, too.
I was riled. My blood was pumping. During the commercial break, I yelled at the groupie guy. Through it all, Harriet kept her cool. And yet she was radical. Her delivery was smooth. I’d never been around a radical like this before. I’d never seen such a calm confidence that could so thoroughly disarm the opposition.
Everyone in the world should read her book, Too Late to Die Young. You’ll see what I mean. A quiet tone, but full of radical fire, humor and the proud music of idealism. It gives you strength.
Che Guevarra supposedly said, “The true revolutionary is guided by a great feeling of love.” If you read Harriet’s writing and study her great life, you’ll know what he meant.
— Mike Ervin, New Mobility contributor and fellow advocate
Whoever sat to Harriet’s right at meal time got to help her eat. Frequently that was me. At lunch with some local crip-types one day, a woman beat me to the table and grabbed the right hand seat. This lady is a distant relative of mine and is head of a local crip non-profit.So Harriet asks her to break off a piece of bread in a certain fashion and feed it to her in a certain way. And my cousin said, to my absolute horror, “No, Harriet … you should have some soup first.” I assumed Harriet was going to erupt.”Let’s trade places,” I said contemptuously to cousin Airhead, trying to short-circuit a nasty scene. Harriet cut me off.”Sit back down, Paul,” she said emphatically. And she very calmly, graciously and politely reminded this woman of the finer points of adult crip etiquette. What Harriet realized — and what I had forgotten — was that this woman had a child with a serious disability. The lady was not being arrogant or condescending or demeaning. She was just being a Southern mother.
Harriet didn’t roll around locked in the pissed off position. She was tough as hell, but she was never rude.
So I raise my mint julep to salute my dear friend Harriet Johnson. And offer as a toast words which would surely resonate with her …
— Paul Timmons, coordinator of disability-related, community-building events
The world is a worse place for the death of Ms. Harriet McBryde Johnson.
That may sound a strange thing for me to say, since she described me in “Unspeakable Conversations” as “the man who wants me dead.” But then she immediately added: “No, that’s not at all fair. He wants to legalize the killing of certain babies who might come to be like me if allowed to live.”
That is characteristic Ms. Johnson. She grabs your attention with what looks like a cheap shot, and then restores the balance with a more careful account. (From there Ms. Johnson goes on to disagree vigorously.)
But there is no contradiction in my holding both that Ms. Johnson’s parents should have had the option of ending her life soon after her birth, and that her death has made the world a worse place. It makes a big difference if parents can give their child ample love and support. If they do, she may turn out to have a life as good as Ms. Johnson’s. If they can’t, the child’s prospects are already less good than Ms. Johnson’s — as she herself described, in one of her other powerful pieces of writing, “The Disability Gulag.”
Ms. Johnson and I exchanged e-mails from time to time over the years since our first encounter in Charleston in 2001. She would rebuke me whenever I wrote something she thought misguided, which was more or less whenever I wrote about issues affecting people with disabilities. (Readers of New Mobility may not know that this has been a relatively minor aspect of my work over the past decade.) But I think we respected each other as worthy adversaries, and I like to think that there was even some affection between us.
Having said that, perhaps I should explain why I do not refer to Ms. Johnson by her first name. When we arranged her visit to Princeton University, she raised the issue of how we should address each other. I said that as an Australian, my preference was always for informality, and suggested that I call her Harriet, and she call me Peter. She told me that given the seriousness of the difference between our views, she did not think we could be on first-name terms. I then said that if that was her preference, I was willing to call her Ms. Johnson, and she should call me Professor Singer. She replied that if I wanted her to use that title, I should use “Attorney Johnson.” We ended up with “Mr. Singer” and “Ms. Johnson”.
People with disabilities have lost a feisty champion, and I have lost the sharp critic who in recent years has always been looking over my shoulder whenever I wrote about issues affecting people with disabilities.
— Peter Singer, professor of bioethics, Princeton University
Imet Harriet personally at the 2003 Disability Summit in Charleston. Like many young disabled people, about a year ago, I was out of work. I e-mailed Harriet and told her that I wanted to work for her. I told her that I would do anything she was willing to pay me for. At the time I knew that my request was ridiculous and a bit presumptuous. Harriet’s response was that she wasn’t hiring anyone. However, after that correspondence she recommended several positions to me, and even went so far as to make several personal recommendations on my behalf.Even though my career has taken a different course, I am grateful that Harriet was willing to stick her neck out for someone that she barely knew.
— Joe Hall, Web developer/marketer
I am stunned to read of the death of this amazing, alive woman. This week, I was looking for an interesting non-fiction book and picked up her fine autobiography, Too Late to Die Young: Nearly True Tales from a Life. I could not put it down. I went online to find out more about this Harriet Johnson person and found notice of her death. Now that I had discovered this wonderful person, I find that she has died on the very day I found her. I feel robbed of the opportunity to ever meet or contact her.
I found her insight, often presented with such good humor, so significant to the education of those of us who do not have limiting disabilities. I will never again regard an individual as “disabled” but rather as a person — a human being — with a disability. Harriet, in one day, in one book, on the day of her passing, changed my understanding of having disabilities and created within me a respect for all human life, regardless of any given limitations. I know from her book that Harriet would regard her own passing as a part of life, but my heart goes out to her friends, co-workers and family. How she will be missed.
— Marilee Caliendo, one of many who together form Harriet’s legacy
Good Morning – An Ending
This excerpt is from chapter 11 of Harriet McBryde Johnson’s Too Late to Die Young, published by Picador and distributed by Harry Holt and Company in 2005. The 261-page book retails for $14.
How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come up against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure.
For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.
But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.
I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.
But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about phleasures that may seem a bit odd.
Let me give some examples.
John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know.
A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty.
Barry Corbet, a hotshot para now falling apart, is stuck in bed for several weeks with a pressure sore [Corbet died of bladder cancer in December 2004]. As he lives with one marvelous view, he says life doesn’t go away; where would it go? He says life has never been richer or more juicy.
In an essay on smell, Helen Keller wrote that she could never warm up to another person who did not have a distinct and recognizable body odor.
After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known.
My friend Kermit, a quad on a budget, goes out to lobby the legislature and finds a coffee under way. He can’t grasp with his hands so he makes a legislator feed him a donut. The last lobbyist out removes his clip-on tie.
At a summer camp, a mentally retarded boy badgers a girl in a wheelchair to teach him to play checkers. He knows he’s slow and she’s bored, but he won’t give up. Then something clicks and her expectations make sense at last and he sees the patterns and wins the game. For the smart girl in the chair — for me — it’s a humorous, humbling lesson. For the slow boy, there’s joy in pushing his intellectual limits. The peculiar pleasure is unique to each of us, but it’s also shared; the sharing makes a bridge across our differences.
Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body — imperfect, impermanent, falling apart — is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.
Some people, disabled and otherwise, conceptualize a self distinct and apart from the body. I may have at one time done so. I’m not sure. I know it is somehow possible for me to talk about me and my body as though separate, even though my mind and heart say we are one. At this stage in my life, my body constantly makes its presence known as needed, telling me with an urgent pain to deal with a wrinkle under my seat belt, or reminding me with a tremble or ache or flutter of its desire for food or rest or some other pleasure. Now the body I live in doesn’t only affect me. It is me.
The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.