April 8, 2005

Stories of a Charmed Life

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Review of “Too Late to Die Young: Nearly True Tales From a Life,” Harriet McBryde Johnson,” Henry Holt & Co., 2005, 272 pp.

Harriet McBryde Johnson does not suffer fools gladly. She regularly protests Jerry Lewis’s telethon for Muscular Dystrophy. She was appalled at the sight of the newly-crippled Christopher Reeve featured as prime time speaker at the 1996 Democratic Convention. Harriet has never been able to walk, dress, or bathe without assistance, due to a congenital neuromuscular disease. Yet this almost-50, feisty Southern belle lawyer and disability rights activist simply refuses to abide Lewis’s patronizing “support” for the disabled, or the use of Reeve out on the DNC stage as a token “crip.”

I first met Harriet at a National Lawyers Guild convention years ago. She doesn’t exactly blend in with the crowd, with her tiny 70-pound frame draped in a shawl, hunched over in her ubiquitous wheelchair, chin resting on a delicate curled-down hand, ample earrings dangling beside her long braid. Harriet rolled on to the national literary stage with her debut on the cover of the New York Times Magazine and the accompanying story of her unlikely debate with Princeton University Professor Peter Singer, advocate of the “genocide” of disabled babies. That article is reprinted in slightly different form as one chapter of Harriet’s book, titled “Unspeakable Conversations.” It begins: “He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along, and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.”

The heart of Harriet’s argument is that disability does not predict quality of life; people are not fungible. She asks, what about mixed-race babies who are as unadoptable as babies with disabilities? Singer, according to Harriet, will not draw the line at race, just at disability.

A self-proclaimed atheist, Harriet objects to Singer’s characterization of his critics with reference to religious terms such as “the doctrine of the sanctity of human life.” One cannot consign Harriet to the same box as the religious right – both pressed for Terri Schiavo’s case to be reviewed by federal courts, but for different reasons. In a recent article, Harriet argued, “Despite the unseemly Palm Sunday pontificating in Congress, the legislation enabling Ms. Schiavo’s parents to sue did not take sides in the so-called culture wars. It did not dictate that Ms. Schiavo be fed. It simply created a procedure whereby the federal courts could decide whether Ms. Schiavo’s federally protected rights have been violated.” Whereas conservatives allegedly premise their position on the “right to life,” the pro-choice Harriet opts for pure self-determination: “If we assume [Ms. Schiavo] is unaware and unconscious, we can’t justify her death as her preference. She has no preference.”

When asked about assisted suicide, Harriet replies, “choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life.”

Harriet chides those convinced the disabled “suffer” from their disabilities. She loves life. Her day is meticulously organized around how she will get out of bed, bathe, dress, eat, go to the bathroom, and roll down the street to her office. Described in the book as “self-centered, smart, active, funny, argumentative, sociable, engaged, loving, vain, forgiving, and ready for adventure,” the “Harriet character” takes the reader inside her bony skin, on a unique ride.

The memoir begins with three- or four-year-old Harriet playing with dolls on the living room floor. She sees on TV a little boy playing with toy soldiers on the floor. He is in a wheelchair, then a bed, then he’s gone. “Little Billy’s toy soldiers have lost their general,” says the unseen narrator. He had Muscular Dystrophy. Harriet realizes that she, too, will die. In her recurrent dream, a judge sentences her to death. “The death sentence hangs over my childhood like a cloud,” writes Harriet. “Beneath the cloud, I live a happy child’s life. But then and now, life has a certain edge. I know it will not last.” Harriet intones, “I’ve accepted the reality of death so early it’s hard to imagine life without it.”

Living under a sentence of premature death has not slowed Harriet McBryde Johnson one whit. “An awareness of death fosters appreciation for the stuff of life.” She has unexpectedly reached middle age. “In the last twenty years or so, I’ve lost most movement in my arms and several fingers; in the last four years, I’ve lost the ability to swallow most solid foods and so much flesh that I am coming to look like the skeleton I will someday become. Yet, day by day, my physical deterioration has been slow, downright gentle. If the next twenty years are like the last, I’ll be old. It certainly could happen.”

Harriet has always been a force to be reckoned with. In 1983, Ronald Reagan visited her South Carolina law school. Harriet’s sign read, “Ron steals from the poor & gives to the military.” Before the President’s arrival, Harriet refused to consent to a routine security search of her room unless she could be present. The Secret Service was no match for Ms. Johnson. Under the watchful eyes of Harriet, and Karl Marx, the agents conducted the search. Harriet’s mother had given her the Marx poster because she thought a girl in student housing should have a big picture of a man over her bed.

Not one to mince words, Harriet, when told the first President Bush was speaking to foreign leaders in New York when she flew there to appear on NBC, mused, “I think there are still a few foreign leaders he hasn’t thrown up on yet.” His son has evidently taken care of the rest.

Harriet’s character has been shaped by her disability, in spite of her disability. She is a fearless warrior, honest to a fault, tender as a kitten. The Southern charm of her hometown Charleston, and of Harriet herself, colors her stories. A consummate storyteller, this inimitable woman has created a heart-warming page turner.

Last October, Harriet was honored at the National Lawyers Guild convention with the coveted Ernest Goodman Award. It is granted each year to a lawyer engaged in legal struggle against financial, political or social odds to obtain justice on behalf of the poor, powerless or persecuted.

Harriet has been a tireless fighter for the oppressed. The problem, she says, is not disability. It is discrimination and prejudice. She worked to win passage of the landmark Americans with Disabilities Act in 1990, and continues the battle to render its promise a reality.

A woman who prides herself on making waves, Harriet thrives on living and loving. “When I die, I might as well die alive,” she writes. “When I die, I might as well die striving after wind.”