Living well is the best revenge

A review by Mary Johnson

Protests of the annual Jerry Lewis Labor Day MDA telethon run like a leitmotif through Harriet McBryde Johnson's Too Late To Die Young. Those of us who have known Johnson for years know her for -- and possibly because of -- these protests. She announces them on listservs. She rallies the troops for other protests around the nation. In the book they become, more than events on the calendar, a way of letting the reader understand something about Johnson, and about the way she sees herself being in the world.

"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."

But a funny thing happens: expecting death turns out to be a good thing -- especially when one doesn't die. "Living our lives openly and without shame," she writes near the book's final page, "is a revolutionary act."

Like almost everything in this masterfully paced and structured book, the Telethon stories and the "when I die" stories are their own tales, but they are also a way of talking about issues and perceptions that people who have disabilities are confronted with again and again. Because of the skill Johnson brings to her writing, Too Late To Die Young serves as both a memoir and a kind of revolutionary act itself. The latter may become fully clear only when one has finished and closed the book.

"I'm talking mainly about getting people to drive my van," she says in her Southern voice. But note that "mainly": she's also talking about getting people to do something quite more complex than driving a van.

Subtitled "nearly true tales from a life," Johnson's memoir comes a little more than two years after the 40-something Charleston, SC disability rights attorney and activist burst onto the nation's literary scene with her February, 2003 cover story for the New York Times Magazine -- an article that may have broken that publication's record in recent years for causing a stir. "Unspeakable Conversations," her tale (retold in the book) of her meeting and subsequent debate with well-known Princeton philosopher Peter Singer, generated an unparalleled amount of commentary on the magazine's online forums and in its letters to the editor.

The article still reverberates. Singer "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." Invited to Princeton to debate Singer, Johnson argued "that the presence or absence of disability doesn't predict quality of life."

Too Late To Die Young certainly proves that point. If nothing else, her book shows what a rich and full life one can have as a crip -- shows that, like anybody's life, what predicts quality is generally tied to socionomic status and education. Not disability.

"I am set apart not by any basic realities, but by perceptions -- theirs and mine." This seems the book's overarching theme. The chapter "Art Object" is the story of her contretemps with the New York Times Magazine photographer sent to record her image for the "Unspeakable Conversations" article. But in Johnson's recounting of the test of wills between a New York artist used to seducing her subjects into pliability before the camera and the immovable object that is the attorney Johnson at her finest, we see both the mindset of the "uppity cripple" -- which most of us will cheer -- and its very unsettling effect on those not used to power in wheelchairs coming from driver rather than battery.

"Protesting is contrary to the teachings of Charleston's civil religion, politeness," she tells us. But she's an uppity crip, and her book is a manifesto for uppity crips everywhere: "I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle."

The book's jacket flap says that publication of Too Late To Die Young "marks the arrival of an unforgettable American voice." And it is that, for sure. But for those of us in the disability rights movement, it's more than that: it's one of our voices. Through that skilled narrative voice, we come to know Johnson the radical activist, the courtroom persuader, the prima-donna ("You're easy to deal with," her father tells her. "As long as you get exactly what you want and no one gives you any shit.").

Maybe you have to be privy to the crip movement to get some of the humor, but Too Late To Die Young is funny -- in some places hilarious. It's fun, too, to think about what the book will say to the "unaware." Her first chapter was excerpted in the March/April AARP magazine; the book has a good shot at reaching a lot of people. What will they take from the book?

People read into most books what they want or expect to find. It seems to happen more with crip books, because, it seems, people simply can't take in -- still, even today, they can't take in -- the shifted realities of crips' lives seen from the inside out (and Johnson's book has more of these reality-shifting moments than most). Still, it makes you wonder how people learn anything new.

What effect will her retelling of Jerry Lewis's infamous (among crips) 1990 Parade article (the "half a man" article) have on the Lewis image and the Telethon problem? Will readers finally become enraged? Will they finally understand? Johnson recalls the article -- and the message the MDA promotes -- as a "kick in the stomach":

Didn't Hitler's Germany prove the danger of denying full personhood based on genetic characteristics? I'm astounded that anyone, even the likes of Jerry Lewis, could put his name on such a thing. I'm astounded that any magazine, let along a "non-controversial" commercial outlet like Parade, could run it. Don't they hear the bigotry?

But Johnson quickly answers her own question: "No they don't.

"When bigotry is the dominant view, it sounds like self-evident truth."

How will Johnson's view of the Telethon as a form of "child abuse" ("they're still sentencing children to death on live TV, in the presence of the children and their families...No matter that they mean well. No matter that it seems to be bringing in tens of millions of dollars. That only makes it worse.") go over among readers who are not part of the disability community she knows so well?

Johnson is a revolutionary, but not a wild-eyed one. Those readers who take the strong talk to be "wild-eyed" -- and there will no doubt be some who do -- only show how much of a disconnect now exists between disability culture and the mainstream. If her pronouncements seem over-the-top to readers, it is only because disability culture is so unknown. The things Johnson says about telethons, about disability rights, about perception, have been said many times (although never as crafily) within crip rights circles for years.

It's a safe bet that Johnson knows exactly what she'd doing, and is in fact quite clear-headed about it. And its cost. At the end of her "Honk if you Hate Telethons" chapter, she writes,

This discussion is too real, too rich, too much our own, to offer for public consumption. It's not ready for the streets of our hometowns or the studio in New York or the gates of Ninevah. The public audience is not ready for this discussion. We are.

It is an observation about the 1990s message offered up from her anti-Telethon comrades around the country. But as with virtually everything in this book, it is about more than that. In this case, it could as easily be about this book itself.

Conversion is hard. More often than not, people confronted with things they'd just as rather not be confronted with will lash out.

It may be that people not privy to disability movement consciousness simply won't know what to do with Johnson and her observations. While they may be impressed with her life, they may not be able to move beyond their own stereotypes, stereotypes that put every cripple into the either "tragic" or "amazing" category. For them, of course, Johnson will be in the "amazing" box. But if readers miss what she is saying due to their own closedmindeness, then it is they who will be in the "tragic" box.

Posted 4/18/2005

Mary Johnson (no relation to Harriet McBryde Johnson) edits Ragged Edge Online.

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