Left: photo by Katy Grannan for the New York Times Magazine.
Harriet on the photo: The New York Times Magazine cover has been described as beautifully disturbing, and most nondisabled people seem to see it that way. I'd prefer to call it disturbingly beautiful, but I'll take the other way around if I must. The disturbing part happens inside people's heads; this unconventional body, draped and lit and posed like a fashion model, apparently floating in space in a power chair, disturbs preconceived notions, makes people question what they think they know. The beautiful part? Well, that's me. Objectively seen by Katy Grannan.
I'm three or four years old. I'm sitting on the living room floor, playing with dolls. I look up at the TV and see a little boy. He's sitting on the floor, playing with toy soldiers. Then he's in Little League; he stumbles on his way to first base. He visits a doctor. His parents are sad. He's in a wheelchair. Then a bed. Then I see the toy soldiers. No boy. An unseen narrator says, "Little Billy's toy soldiers have lost their general." It's a commercial for the Muscular Dystrophy Association. As the narrator makes the pitch, a realization comes to me: I will die.--both quotes above from Too Late to Die Young, by Harriet McBryde Johnson.
Is it really one of my earliest memories? Or was it manufactured by my imagination? I don't suppose it matters. Either way, it was the truth. It was my truth.
I'm a little girl who knows she will die, but I don't say anything; I don't want to distress my parents. Somehow, though, my mother realizes. "That boy," she tells me more than once, "has a different kind of muscular dystrophy. Girls don't get it." Maybe, I think, but he looks a lot like me. And pretty soon I see little girls on the telethon and hear that girls, too, have "killer diseases."
I don't know the word, but I figure my mother is in denial.
By the time I am five, I think of myself as a dying child. I've been sick a lot. There is some discussion before they decide to send me to kindergarten. I am glad they do.
When I die, I think, I might as well be a kindergartner.
45 years after she entered kindergarten, expecting to die, Harriet McBryde Johnson has died. She illustrates the danger of sentencing people to death: just maybe, they won't die. And then what happens?
What happened is that Harriet became a first-class hell-raiser, using her background as a genteel, educated southerner to work for the rights of other people. She was the lady who gave Jerry Lewis hell every year. She was the lady who debated Peter Singer. She was an uncompromising disability-rights lawyer who influenced the younger generation with her kick-ass ways.
She was, in short, something else. We have lost a powerhouse-activist, and if I may say so, a southern treasure.
She was beautiful, as Katy Grannan clearly saw. I saw her that way too. In fact, I can well remember the first time I saw Harriet McBryde Johnson on an NBC-news show criticizing telethons, well over a decade ago.
As my regular readers know, my mother was disabled, and consequently, I was raised right. I don't stare at people, ever. But... well... Harriet was quite different--you didn't stare out of abject rudeness, you simply wondered where her body was... her elbows were right on her wheelchair-seat, making her torso seemingly disappear. You involuntarily did a double take. (One got the impression she was quite used to double, triple, quadruple takes.) At first, I thought she was like Johnny Eck, Boy with Half-a-Torso, and then I saw her tiny legs and feet, wearing the same hippie Chinese Maryjanes I do.
I have never forgetten her meticulous, careful, lawyerly phrasing: "I have problems with telethons as an institution," she explained, very simply and with tremendous poise and dignity. INSTITUTION! That was the word I needed to hear. Her protest against the Jerry Lewis telethon wasn't about him personally (even if he is a dick), and it wasn't about the droves of caring moms staffing phone banks, collecting money at PTA meetings and taking donations. This was about an INSTITUTION--and when she said that, it all clicked for me. This is a racket! I thought. Donate a few bucks, assume you are doing the right thing for the kids and... then forget all about it. No lasting changes in the health care system take place, no kids learn to co-exist with disabled children as equals. It's about pity = money. And where does the money actually go? Not to actual disabled children, who need wheelchair ramps and other similar useful stuff, but to scientists who are promising to prevent more disabled people from being born in the first place.
Meanwhile, there are people who could use that money in the here and now, for housing-modifications, payment for medical bills, special-needs education, etc. "In reality," Harriet said, "many of the people contributing would likely be surprised to know where their money goes. They often believe they are helping pay for the children's medical bills, for instance. Just ask them."
And yes--I always believed that, too--before Harriet said otherwise on TV.
Partly because of her striking beauty and southern poise, and partly because she represented a political breakthrough to me, I never forgot her. And when I went to parties where clueless able-bodied people said, "Do you believe they are demonstrating against JERRY LEWIS now?!? Political correctness has gone too far!" I would repeat everything she had said, starting several pretty good discussions in the process.
She made the case, so politely, so southern. Who could argue?
Peter Singer is one person who might argue.
I am not able to discuss him rationally, for a variety of reasons, but Harriet took him on in two debates. Then she wrote about the events for the New York Times Magazine, turning herself into something of a star. The article was titled Unspeakable Conversations, and she shows her southern barbed wit throughout. For instance, she is well aware of the reactions to her appearance:
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.She describes her first debate with Singer, philosopher and professor of bioethics at Princeton University, who has a number of supposedly utilitarian, pragmatic views on disability (which basically come down to: euthanize them like stray kittens when they are infants):
I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn't die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don't know what to make of us.
He responds to each point with clear and lucid counterarguments. He proceeds with the assumption that I am one of the people who might rightly have been killed at birth. He sticks to his guns, conceding just enough to show himself open-minded and flexible. We go back and forth for 10 long minutes. 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.And then, she is shocked (as I often have been, too) when she scratches the surface and finds Peter Singer holds a view of disability right out of a Hallmark greeting card, while he nonetheless claims scientific/philosophic objectivity:
To Singer, it's pretty simple: disability makes a person "worse off."She is speaking colloquially, of course; Harriet never "had enough" of arguing disability rights. And she ended up debating him at Princeton, too.
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.
Pressing me to admit a negative correlation between disability and happiness, Singer presents a situation: imagine a disabled child on the beach, watching the other children play.
It's right out of the telethon. I expected something more sophisticated from a professional thinker. I respond: ''As a little girl playing on the beach, I was already aware that some people felt sorry for me, that I wasn't frolicking with the same level of frenzy as other children. This annoyed me, and still does.'' I take the time to write a detailed description of how I, in fact, had fun playing on the beach, without the need of standing, walking or running. But, really, I've had enough.
Harriet's obituary in the Charleston Post and Courier also reminds us of her lifetime of activism in the Democratic Party:
She was chairwoman of the Charleston County Democratic Party executive committee (1988-2001); city party chair (1995-2000); secretary of city party (1989-95); national convention delegate (1996); president, Charleston County Democratic Women (1989-91); County Council candidate (1994); and a certified poll manager.Harriet, we will miss you. I know you at least wanted to outlive that sanctimonious ass Jerry Lewis! I am aware that you were a proud atheist, but my belief is that people like you get to heaven for doing good works.
And I hope you will look down and bless us as we continue the work you started.