Stories of a Charmed Life

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Stories of a Charmed Life

By Marjorie Cohn

t r u t h o u t | Book Review

 

Friday 08 April 2005

 

Too Late to Die Young: Nearly True Tales from a Life

By Harriet McBryde Johnson

272 pp. Henry Holt. $23.

 

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. "

 

Marjorie Cohn, a contributing editor to t r u t h o u t, is a

professor at Thomas Jefferson School of Law, executive vice president

of the National Lawyers Guild, and the US representative to the

executive committee of the American Association of Jurists.

 

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