A lawyer in South Carolina since 1985, Harriet McBryde Johnson helps facilitate benefits and civil rights claims for poor and working people with disabilities. For more than 25 years she has been active in the struggle for social justice, especially disability rights. Born with a type of muscular dystrophy (a congenital neuromuscular disease), she has always needed assistance to walk, dress and bathe. She has also traveled to Havana to cover a disability rights convention, served as a South Carolina delegate to the Democratic National Convention, chaired the City of Charleston Democratic Party and contributed regularly to The New York Times Magazine and a variety of other press.
Remembering how a TV commercial for the Muscular Dystrophy Association made her feel condemned to death as a child, Johnson now holds the world endurance record (fourteen years without interruption) for protesting the images of pitifulness portrayed in the Jerry Lewis telethon.
In 2002, Johnson was invited to lecture at Princeton University as a guest of Peter Singer, a well-known bioethics professor who has proposed that babies with disabilities—like the baby Johnson once was—be lawfully killed at birth. Never one to shy away from a debate, Johnson loaded up her power chair and headed to Princeton to speak alongside the man who considered lives likes hers avoidable mistakes. The trip yielded a lively discussion between the two and also inspired her to write one of recent history’s most provocative New York Times Magazine cover articles, “Should I Have Been Killed at Birth?” The response from readers, publishers and agents wanting more of her story was overwhelming, leading her to produce the unconventional and often humorous memoir Too Late to Die Young: Nearly True Tales from a Life. The following is an excerpt.
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.
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 my truth. It is 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 die a kindergartner.
I’m in a courtroom at the defendant’s table. I look up at the bench and hear the judge sentence me to death. A gasp rises from a faceless crowd. They’re shocked, astonished. I’m not. I’ve known all along. There’s no question of guilt or innocence, justice or injustice. It’s simply a fact. It’s hard to understand, but true. I will die.
How old am I when that dream first comes to me? Eight, I think.
The death sentence hangs over my childhood like a cloud. Beneath the cloud, I live a happy child’s life. Why not? A daughter of graduate students who become teachers, I am well tended by a succession of black women. My sister, Beth, two years old when I arrive on the scene, generally tolerates me with good grace; three brothers come along for me to boss. The TV regularly brings me Dick Van Dyke, Andy Griffith and Bullwinkle, and one person in a wheelchair, Dr. Gillespie, who fulminates and barks orders at handsome Dr. Kildare. I lay LPs on the turntable and soak up the sounds of Joan Baez and Los Hermanos de Vera Cruz. There are books with beautiful pictures. To try to fatten myself up, I get black beans and fried bananas. To fry my brain, Alice in Wonderland. All these things are great pleasures, then and now. But then and now, life has a certain edge. I know it will not last.
When I am thirteen, I read Orwell’s 1984 and calculate how old I’ll be then. No way, I think. I go to a special school and then a normal high school and study hard, but I have no fantasies of a future. I study because somewhere along the way I’ve developed a competitive streak and because studying, too, is a pleasure.
And besides, I think, when I die I might as well die educated.
I’m watching an old Dracula movie on TV. I’m twelve, old enough to know this is cheesy pop culture, and yet it speaks to me. Like any preteen I pick up, without fully understanding, the latent sexual charge: The count’s perverse seduction of the Englishman’s fiancée is weird sex safely disguised as weird violence. But for me it’s not only about strange passions under the moon, bats passing through tight cracks, moaning in canopy beds or even all that neck-biting. For me, the best part is when Professor Van Helsing, the expert from Amsterdam, taps his pipe and explains, “They are called the Undead.” The professor’s presentation has the dull rationality of a graduate seminar. Dramatically, it’s agony. But I love it. It gives meaning to the crashing ending, that moment when they drive the stake through Dracula’s heart. For Dracula, there is no heaven or hell, no rebirth, no haunting. It’s dust to dust and vanishing in the wind. Ah! Beautiful!
I’ve accepted the reality of death so early it’s hard to imagine life without it. But figuring out what it means is another matter. I look to conventional religion and try to think of death as a one-way ticket to a perfect place. With a naturally legalistic mind and a smattering of Catholic doctrine, however, I conclude that the odds are against a straight shot to heaven, especially since Thought Crime counts. And anyway, who would want perfection, having known the gorgeous squalor of the Carolina Lowcountry?
There are mystical and occult alternatives. Hauntings, auras and energy fields. Reincarnation. Time warps, parallel universes. Returning to the Oversoul. But none satisfies me. It’s Professor Van Helsing who speaks to the fundamental tragedy of refusing to die; it is Dracula’s end that shows the way out.
And what of Dracula’s bride? The feminist view is that she pays the price of breaking convention in a patriarchal society. For me, her story means something else. When the tale starts, she is beautiful, healthy, engaged to be married—normal in every way. But she, too, gets a stake in the heart. She shows that death is not only for people like me.
It comes in a slow dawning, this idea that death is for normal people too. In childhood and youth, I am personally acquainted with only a few dead people, but there are lots of them around—they live in family stories. At our Thanksgiving table, my mother speaks of Great Aunt Harriet’s dinner rolls, which always came out of the oven just as the family sat down to eat. Great Aunt Harriet died nearly twenty years before I was born; the black people who made those rolls, and timed them so perfectly, are dead, too. As we spoon out the oyster casserole, my grandmother tells how Uncle Oscar found a pearl in his oysters and set it in a gold tiepin. Then someone, maybe someone born after Uncle Oscar died, remarks that of course it happened to Uncle Oscar, because he was rich and drew more riches like a magnet.
So rich uncles and hospitable aunts die. I will die. It is only one more step to infer that everyone at our table will die, too. What amazes me is that the others seem oblivious. They seem to think that dying is only for the terminally ill, only for people like me.
I don’t see myself as morbid or obsessed, but I think about death a lot. I know it isn’t normal, but my relationship with death becomes part of me. I can handle it, even if normal people can’t. I decide to be discreet, like Dracula, and live quietly among normal people. No need to trouble them with details. No need for them to know about the coffin I keep in the basement.
I start being vague about my medical diagnosis. Rather than owning this or that form of muscular dystrophy or this or that type of muscular atrophy, I say I have a muscle disease. I don’t want others to connect me with the dying people on the telethon. I figure if I let people peek in my basement, they’ll jump to the wrong conclusion. They’ll define me as one of the undead, an unnatural creature, not really alive but feeding on the lifeblood of others. Or, alternatively, they’ll make me a pity object, one of Jerry’s Kids—someone to make them grateful they are not like me. By setting me apart as a death totem, they can avoid looking in their own basements where their own coffins wait.
I know I am as alive as any of them, and they are as mortal as I. I am set apart not by any basic realities, but by perceptions—theirs and mine. They insist on dividing the world between the living and dying; I insist on both at the same time. Why not?
I study, play, work, find a place in a family and a community, and enjoy the many delights that continue to fall on me. As my body continues to deteriorate, my life looks more and more normal.
At twenty-five I leave the cozy comfort and familiar dysfunctionality of home and family to go to law school. I figure, I’ll be twenty-seven when I finish; if I go now, I can probably practice for a couple of years.
By this time, the thought is almost subconscious: when I die, I might as well die a lawyer.
I’ve just turned thirty. I’ve been lolling in bed for nearly three weeks; I say I’ve strained my neck, but really it’s major depression. Just before my birthday, my mother had brain surgery; she’s come through it beautifully, but I’m terrified to think I could actually outlive my parents. I’m put further adrift by the sudden death of the crazy German doctor who nursed me with pea soup and sausages when I refused to go to the hospital with pneumonia. Now I remember how he kept vigil at my bedside so my parents could sleep and then fell asleep himself. As I listened to his deep barrel-chested rumble, I imagined he was snoring in German. In the middle of the night, in the middle of a medical crisis, that snore made me smile and know again that life is a great gift, worth hanging on to. Now, in my depression, the memory makes me smile again. But then I sink back down.
Maybe sink is the wrong word; it feels more like rising. It has that kind of intensity. Is this a midlife crisis? Should I now take stock? Deal with my disappointed expectations? My thoughts race by, but I manage to grab them and take a look. I find they are coherent. I’m bonkers, but rational. I know what’s bothering me: my plan to die young hasn’t worked out. I wonder, what would I have done differently if I’d known I would live so long? What do I do now? My thoughts take on the structure of a song, a song with too many verses. But there’s a simple chorus, repeated over and over: it’s too late to die young.
The time comes and I tell them my neck is better. I go back to work and all of life’s routines, but some things have changed. I went in bed agnostic and came out atheist. When the next medical crisis comes, I find I can hear the death sentence without dread. The lessons of Little Billy and his toy soldiers, of Dracula and his bride have gone from my head to a deeper place. I have taken death into my heart.
I decide to talk about the coffin in the basement. As an experiment, I confide to two nondisabled woman friends that I am genuinely surprised to be alive at age thirty.
“I had no idea,” one says. “I’ve never thought of you that way.”
“Absolutely not,” the other agrees.
They refuse to believe I am under a death sentence. I am pleased my reticence has been so effective, but I also wonder if it will ever be possible to get real.
Then I reconsider my childhood death sentence and decide I have been the victim of a fraud. Sure, I am mortal. Yes, I will die. But I have never been terminally ill the way I was led to believe. I study the telethon and try to understand its peculiar power. It spews out the same old messages—killer disease, life ebbing away, before it’s too late. As I hear the death sentence pronounced on another generation of children, I wonder how many have actually been killed by the predictions. How many have suffered pneumonia without vigilant parents or a crazy German doctor with pea soup? How many have died for lack of a reason, when a reason was needed in the middle of the night, to hang on to life? Worst of all, how many have lived and died without learning to value their own lives?
I join the telethon protest and oppose physician-assisted suicide. I want people to know our culture is playing fast and loose with the facts. While anyone may die young, it’s not something you can count on. You have to be prepared to survive.
Among allies in the disability rights movement, I start hearing things I don’t expect. “We’re not dying,” some comrades say. “We’re disabled, not terminally ill.” Even in the movement, denial rules. It’s not only nondisabled people who shy away from what’s in the basement.
I decide to embrace the death sentence. No need to fear it; no need to hasten it. Mortality is something all people share, a unifying force. Every life, whether long or short, is a treasure of infinite value. These things are true, I figure, and it’s my job to say so.
When I die, I might as well die honest.
by Harriet McBryde Johnson
From Too Late to Die Young: Nearly True Tales from a Life. Copyright 2005 by Harriet McBryde Johnson. Used by Permission of Henry Holt & Co., Inc. All rights reserved.