Person of the Year. Harriet McBryde Johnson: A Life Well Lived

Photo by Wade Spees / The Post and Courier

Harriet Johnson has cracked the invisible wall that separates the disability community from mainstream America. Her debates with controversial bioethicist Peter Singer, her cover story in The New York Times Magazine and the response it engendered, and her forthcoming memoir have placed in the popular consciousness the seminal disability issue–the right to exist. Others with disabilities have been celebrated for their brilliance in a particular field (Stephen Hawking) or for their high-profile struggle to overcome disability (Christopher Reeve). Johnson’s achievement, however, is all the more remarkable because she is a woman in a society dominated by the male viewpoint, because she was relatively unknown except in disability circles, and because–by force of will, intellect, personality and skillful writing–she has persuasively challenged the myth that people with disabilities are of inherently less value than nondisabled people. For this considerable accomplishment, New Mobility has chosen Harriet Johnson as our Person of the Year for 2003.

For the unsuspecting reader sorting through their Feb. 16, 2003, New York Times Magazine, it must have been a jolt. There on the cover of the Sunday magazine was 70-pound, 46-year-old Harriet McBryde Johnson all scrunched up in her wheelchair. Wrapped in one of her many shawls, she sat–elbow propped on knee, chin propped on fist like Rodin’s The Thinker, with a Rapunzel braid flung forward over her shoulder. Across the front of the photo it read: “Should I Have Been Killed at Birth? The Case for My Life.”

The best description of the Harriet Johnson captured in that photo can be lifted from the text of her cover story, “Unspeakable Conversations”:

It’s not that I’m ugly. It’s more that most people don’t know how to look at me. The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that’s the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I’m Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin. When, in childhood, my muscles got too weak to hold up my spine, I tried a brace for a while, but fortunately a skittish anesthesiologist said no to fusion, plates and pins–all the apparatus that might have kept me straight. At 15, I threw away the back brace and let my spine reshape itself into a deep twisty S-curve. Now my right side is two deep canyons. To keep myself upright, I lean forward, rest my rib cage on my lap, plant my elbows beside my knees. Since my backbone found its own natural shape, I’ve been entirely comfortable in my skin.

Johnson’s essay was about her two encounters with Peter Singer, the infamous Princeton University philosophy (bioethics) professor. Perhaps his best-known work is Animal Liberation,the sacred scripture of the animal rights movement. But Singer has also written, and reiterated often, that parents who give birth to babies with disabilities like Johnson’s (muscular dystrophy) ought to have the right to have those kids euthanized. You might say he has tried to legitimize the idea of replacing them with a better model, as this passage from his book, Practical Ethics, makes clear:

Suppose a woman planning to have two children has one normal child, then gives birth to a hemophiliac child. The burden of caring for that child may make it impossible for her to cope with a third child; but if the disabled child were to die, she would have another. … When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the hemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.

Singer has devoted a lot of time in his writing and speaking to delineating an “ethical” rationale for this sort of dangerously shallow disability bigotry.

Johnson chose not to picket Singer or shout him down. Instead, they engaged in a cordial but passionate debate in which she offered herself as a living example of the folly of Singer’s disability/quality-of-life assumptions. That’s more her style. Her most evident quality is a bemused South Carolina charm, which makes it all the more disarming when her sharp wit and wry humor rises to the surface.

In the New York Times Magazine article, Johnson’s prose discombobulated readers as much as her picture, some blissfully so. On the Times online message boards there were about 600 responses. Her e-mail box was stuffed full of reader reactions within hours of when her story appeared.

Johnson enjoys the mountains of Colorado with fellow disability activist and writer Laura Hershey. "The life of a butt wipee is interesting, adventurous, eventful," she often says.

Johnson enjoys the mountains of Colorado with fellow disability activist and writer Laura Hershey. “The life of a butt wipee is interesting, adventurous, eventful,” she often says. Photo by Jenifer Kam,

“Their minds were blown,” she says. “I’m repeatedly amazed by how little most people know about disability.” Two parents who were awaiting amniocentesis results wrote that they were rethinking their decision to abort the fetus if a disability was revealed. “A neurosurgeon wrote that he had been making life and death recommendations and now he realizes he doesn’t know enough. It was pretty sobering, really. I hadn’t set out to do anything like that. To me it was still the story I tell my friends in the car. It was a first draft.”

A woman in Midland, Texas, was so inspired she made anatomically correct Harriet paper dolls, complete with Scarlet O’Hara and princess dresses.

Johnson is not a professional writer. She works as a lawyer in Charleston, S.C., mostly helping people who have been denied Social Security and other public disability benefits with their appeals. “The rhythms of it suit me well,” she says. But she scored much bigger than the few writers who have ever tried to convince a mass audience “that the life of a butt wipee is interesting, adventurous, eventful” as she puts it. It wasn’t just the inherent drama of her story that resonated but the literary skill with which she told it. Every passage of her account of the debate with Singer draws you in deeper while provoking thought of what it means to be disabled:

Are we “worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. 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.

Says Carol Gill, assistant professor in the Department of Disability and Human Development at the University of Illinois at Chicago: “It was a ground-breaking article. It was incredibly reassuring and pride-making to see a really gimped-up woman on the cover of The New York Times Magazine. She may not have changed Singer’s mind, but she changed a lot of other people’s minds.”

Katherine Bouton, deputy editor at The New York Times Magazine, edited Harriet’s piece. She says, “Her prose is clear and elegant, alternating between deeply moving personal passages, very funny observations and astute analysis. Her subject matter was fresh and of great importance. We admired her generosity toward Peter Singer, her total lack of self-pity, and her intelligence, which shines throughout every paragraph.”

Within a few weeks of her essay’s appearance, Johnson signed with a literary agent and began fielding book deal offers. She ultimately signed with Henry Holt and Company to write what she calls “a lively memoir in stories.” Deb Brody, senior editor at Henry Holt, secured the book deal. “I read The New York Times Magazineeach Sunday,” she says, “but the truth is, it’s rare that a cover story captures or holds my interest. When I started the article, I expected her to crucify Singer. Instead, she surprised me–and I’m sure most of her readers–by presenting an almost affectionate portrayal of the man. She got me thinking about the issues, but not in a dry, policy-driven manner. As Harriet says of herself, she’s a storyteller, and this is what came through on the page. I realized though, that in addition to having the stories to tell, she’s a real writer, and that, above all, was what gave me the idea for a book.”

Every Labor Day weekend, Johnson takes to the streets of Charleston in protest against the Jerry Lewis telethon.

Every Labor Day weekend, Johnson takes to the streets of Charleston in protest against the Jerry Lewis telethon. Photo by Susan Dunn.

As for the writers that excite her, Johnson says, “I’m a nut for Salman Rushdie. But I don’t write anything like him.” Her style has been shaped more by oral storytelling. “Telling stories is a big part of Southern culture. I have been surrounded throughout my life by great storytellers. My mother is probably the most important influence on my style. Her best stories carry you on a long ride, at just the right pace, with dashes of ironic humor. She happens to have a Ph.D. in comparative literature with an emphasis on the short story, but she learned to tell stories from the people around her, including her mother.”

Both Johnson’s parents are retired college professors. Her father taught Spanish at the Citadel. “But he’s not at all a military man.” She describes the home she grew up in as politically progressive and herself today as a social democrat.

Johnson served for 11 years as secretary, then chair of the Charleston Democratic Party in a state symbolized by the legendary conservative, Strom Thurmond. “My mother’s family going back, they’ve been all kinds of nefarious things, but no Republicans ever. My parents tried to teach their children that justice is a very important quality. And of course the disability experience made those ideas real to me. I was on the receiving end of prejudice and discrimination. I knew what it was like from a very early age.”

Until age 13 she attended segregated schools. One was a separate wing of a regular school with a separate entrance, divided off by tall bushes. “It was really a good, happy situation for me but I wouldn’t recommend it to anyone else. It was very much unstructured. They left me alone so I read books and wrote book reports. I was a big dog in that environment, I guess.” But for the less motivated and intellectually curious, it was mostly a “custodial service” with very little meaningful education going on. There wasn’t even a library.

As a quarantined little girl, what did she think her future held? “I thought I would be dead. I thought before I die I’ll probably live very quietly at home.”

High school was the exact opposite as she transferred to a conservative, white private prep school with high academic standards and no other disabled people. “I was absolutely miserable. It was a major case of culture shock. There’s a certain freedom in having your own place, where you’re not the minority, where you’re not there on their terms with their permission.” But she knew leaving the segregated school behind was necessary. “As long as we’re separated, we’re never going to have a serious education.” So she hunkered down and graduated in three years.

One of the segregated schools was run by Easter Seals and Johnson had been asked to do the poster child bit. Even at that young age she wanted no part of it. “I thought it was beyond ridiculous. I knew it was all lies and it was all about pity.”

That’s another reason Johnson is well-known around Charleston. Every Labor Day she gathers friends, family, whomever she can, and stages a civil but adamant protest against the Jerry Lewis MDA Telethon.

Her attitude toward activism is, “You don’t know how something will work till you try it. Get into a problem and try some crazy thing and see what happens. If you think about what’s the worst thing that could happen, it’s usually not as bad as doing nothing at all.”

Though she prefers the high road, she has great admiration for those who scream and yell and throw their bodies on the line. “The insiders get heard because of the barbarians at the gate.”

On the day the article came out, Harriet signed about 50 copies at an autograph party arranged by a lawyer friend. It was a tea and sandwiches type of party at a Charleston restaurant.

This day came about by a series of accidents. One Saturday night in 2001, the phone rang at the home Harriet shares with her parents and her brother Ross, the youngest of her four siblings. The call was from Laura Hershey, another well-known writer in disability circles who uses a motorized wheelchair. Quick response needed. Not Dead Yet, the disability rights group that kicks butt on the assisted suicide/euthanasia front, just learned Singer would be lecturing in Charleston the next day.

No time to do anything other than just show up. Johnson sat quietly as Singer presented to the crowd what she calls his “replacement baby theory.” She writes: “Even as I am horrified by what he says, and by the fact that I have been sucked into a civil discussion of whether I ought to exist, I can’t help being dazzled by his verbal facility. He is so respectful, so free of condescension, so focused on the argument, that by the time the show is over, I’m not exactly angry with him. Yes, I am shaking, furious, enraged–but it’s for the big room, 200 of my fellow Charlestonians who have listened with polite interest, when in decency they should have run him out of town on a rail.”

When he was finished, Johnson took the mike in the audience and challenged Singer’s thesis that someone like her is necessarily “worse off” than someone like him. Singer calmly defended himself. He didn’t back down.

Johnson mentioned this face-off in the year-in-review letter she stuffs in her Christmas cards. She sent one to Singer. He sent an e-mail reply and a back-and-forth ensued, much of it a continuation of their exchange in Charleston. Eventually Singer invited her to come to Princeton for a more formalized point counterpoint. Harriet was reluctant to accept. She’d heard the voices of activists who think it’s dangerous to dignify Singer’s garbage with a response.

I’m among them. To engage Singer in polite scholarly debate can give credence to the illusion that his conclusions are scholarly and our right to life is a legitimate subject for debate. Singer’s disability writings are as intellectually refined as a sappy telethon profile, as absurdly anachronistic as eugenics propaganda. They’re embraced because they tickle a longing among the most arrogant members of his privileged class to find a palatable rationalization for kicking us inconvenient rabble down the trash chute. The way to show him the same respect he shows us is to fiercely heckle him.

After heavy negotiation on debate ground rules, Johnson accepted. She figured the ethical debate will continue on with or without her point of view, so she might as well strike whatever blows she could. And besides, there would be a great story to tell and to write.

She squared off with Singer once in a lecture hall and once at a smaller dinner gathering. In “Unspeakable Conversations,” she writes, “Singer is easy to talk to, good company. … I’ve come to believe that Singer actually is human, even kind in his way. … But,” she concludes, “like the protagonist in a classical drama, Singer has his flaw. It is his unexamined assumption that disabled people are inherently ”worse off,” that we ”suffer,” that we have lesser ”prospects of a happy life.”

After returning to Charleston, Johnson says, “I started telling the story right away. But I couldn’t bring myself to write the article. I couldn’t get anything going with it. I was trying to write a critical essay that would make an argument. But when it came down to writing, I didn’t have the stomach to do another one of those. Then I wound up writing the story I had been telling.”

It came out to 10,000 words. Knowing it was long, she sent it to former New Mobility editor Barry Corbet, “thinking he might direct me to a small piece of it that might be turned into a publishable essay.” Much to her shock, Corbet told her to leave it alone and send it to a big time publication.

“When he told me this,” she says, “we had a little bit of a fight. I said nobody is going to want to read a 10,000-word story by a writer they never heard of.”

“Methinks the lady, much as I love her, doth protest too much,” says Corbet. “There’s a lot of difference between thinking it should be cut to enhance its appeal to publications and actually wanting to cut it. What I saw was a richly developed story with back stories that were essential to understanding it. Losing the back stories would be losing the story. And I was impressed how generous Harriet was to Singer without giving away the farm. It was such a flawless piece that I saw no reason to mess with it.”

Corbet gave Johnson some leads. She said to herself, “That’ll be an education for him. Once they refuse to read it because it’s too long and it’s by a writer they never heard of, maybe he’ll go ahead and tell me how to rewrite it like I wanted him to.”

The first submission–to The Atlantic Monthly–yielded an encouraging rejection. “I was surprised and pleased to get such praise,” says Johnson. The second landed her in the Times.

From within the disability community, what little negative reaction she received was to the passage where she describes how, during the dinner debate, the propped elbow that’s the fulcrum for her arm movement slipped out, leaving her hanging sideways. Since Singer was sitting beside her, she asked him to straighten her back up.

In her essay, Harriet recounts a phone conversation about the elbow affair with Hershey: “She is appalled that I let Singer provide even minor physical assistance at the dinner. ‘Where was your assistant?’ she wants to know. How could I put myself in a relationship with Singer that made him appear so human, even kind?

I struggle to explain. I didn’t feel disempowered; quite the contrary, it seemed a good thing to make him do some useful work.”

Gill says, “I’m less sanguine about it. I’ve seen enough of the psychological literature on prejudice to know that proximity doesn’t always lead to understanding. It’s just as likely he could’ve been repulsed.”

Johnson expected more public criticism than she got for not depicting Singer as a monster with fangs. Gill thinks she more effectively exposed the warped side of Singer’s nature by capturing the dichotomy. “It’s good to show that he can be kind to animals and want to kill disabled people.”

One public figure, Charles Colson, the Watergate crook turned born-again Christian, was critical of both Singer and Johnson on his Web site: “Ms. Johnson, obviously an able advocate, wrote that she doubted whether she had bested Singer in the exchange. The reason is that, as an atheist … she has no moral basis to refute Singer’s deadly logic so long as she embraces his premises about the origins of life. Only the Christian ideal, that all life is sacred because it is created in the image of God, provides an unassailable answer to Singer’s reasoning. It’s the only sure basis for protecting people like Harriet McBryde Johnson from a moral calculus that reduces them to non-persons.”

“Colson’s answer,” replies Johnson, “is not an answer at all, let alone an unassailable answer, unless you happen to believe in the Judeo-Christian god. I don’t. I uphold the value of life as an important foundation to building a just society, the kind of society that’s fit to live in. The idea is so useful that I don’t worry about whether it is ‘true’ in some ultimate or transcendent sense.”

Philosophical arguments aside, Johnson has moved on to the writing of her memoir. One story she included in her book proposal was about President Ronald Reagan’s visit to her law school campus. The stage was set up right outside her apartment window and the secret service told her to clear out for 12 hours. She refused.

The book about her life will be written in a style Johnson describes as “Extroverted. … It’s story-driven. It’s not introspective. I try to be clear and direct. I like humor. I like very emotional turns.”

Johnson is not stuck on herself as a writer. When I asked her what she really really really likes to do, she said, “I like being in my office.” No matter how high her literary stock soars, she can’t imagine ever giving up her law practice.

“I think it’s important to do real work with real people,” says Johnson. “Somehow the writing just doesn’t seem real.”

“I am awed by Harriet’s talent and knowledge,” says Corbet, “and I hope the Times piece is just a stepping stone to the greater recognition I think she deserves. Damn pity she just wants to be a Southern lawyer!”

Whether lawyer or writer, Harriet McBryde Johnson’s life and the issue she has so skillfully framed will remain intertwined in the public conscience. And a much wider–and wiser–audience than she has ever addressed waits, hoping to learn more about both. “To justify my hopes that Singer’s theoretical world … won’t become real,” she concludes in her essay, “I’ll invoke the muck and mess and undeniable reality of disabled lives well lived. That’s the best I can do.”

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