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

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

by Harriet McBryde Johnson

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With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life

Harriet McBryde Johnson isn't sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy

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With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life

Harriet McBryde Johnson isn't sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant. By the time she realized she wasn't a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community.

Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms. And along the way, she defies and debunks every popular assumption about disability.

This unconventional memoir opens with a lyrical meditation on death and ends with a surprising sermon on pleasure. In between, we get the tales Johnson most enjoys telling from her own life. This is not a book "about disability" but it will surprise anyone who has ever imagined that life with a severe disability is inherently worse than another kind of life.

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Editorial Reviews

Library Journal
As a seven-year-old diagnosed with a neuromuscular disease that required her to use a wheelchair, recalls Johnson, she found Jerry Lewis's Muscular Dystrophy Association (MDA) telethon imbued with such a sense of pity and doom that she felt she must die young. Now a feisty middle-aged attorney and disabilities rights activist still using a wheelchair, she realizes that it is "too late to die young" and continues the advocacy that early exposure to the "pity approach" inspired. Her honest and engrossing memoir is full of lively vignettes that reflect her experiences as she takes on the nondisabled world with bravado, stubbornness, and a bit of Southern charm. From her first demonstration against the MDA telethon to her celebrated debate with Peter Singer of Harvard, who has stated that killing a disabled infant is not morally equivalent to killing a person, this lady pulls no punches. An entertaining look at an activist who insists on living life her way, disability or no; strongly recommended for most collections. [See Prepub Alert, LJ 12/04.]-Ann Forister, Roseville, CA Copyright 2005 Reed Business Information.
Kirkus Reviews
Selected episodes from the life of "a tiny wheelchair woman with a certain amount of mouth," as disability rights activist Johnson describes herself. Johnson not only practices law in Charleston, S.C., specializing in disability issues, but she's a force in the Democratic Party in Charleston and leads an annual protest against the Muscular Dystrophy Telethon, which, she argues, stereotypes people with disabilities as hopeless cases. The present memoir grew out of an article ("Unspeakable Conversations") that ran in the New York Times Magazine in 2002 and is reprinted here. In it, Johnson describes her encounter with Princeton bioethicist Peter Singer, whose position that euthanasia should be legalized in the case of severely disabled newborns has aroused the ire of proponents of disability rights, among others. Johnson holds her own against Singer, as she does against the forceful photographer sent by the Times to take pictures of her for the article. Other chapters briskly and wittily recount her low-budget campaign for a seat representing Charleston on the county council in 1994 (she lost), her misadventures with the Secret Service as a delegate to the 1996 Democratic convention, her courtroom appearance as co-counsel for the plaintiff in a case under the Americans with Disabilities Act (she won), a visit to Cuba for a disability rights conference, which she covered for New Mobility magazine and a disastrous trip in 2001 to a disability convention in Tucson, where a fall from her wheelchair sent her to the emergency room and required an air-ambulance trip back home. The word "frail" scarcely describes Johnson's physique, for she weighs only 70 pounds, has a spine so twisted by musculardystrophy that it can't support her and relies on others for the most basic aspects of daily care. But blunt, stubborn, proud, resourceful and smart are words that do describe her indeed. A remarkable portrait of a woman who is proof that the disabled can live lives filled with purpose and pleasure.
The Washington Post
There is a small but discrete literature by writers who have experienced personal or family tragedy: William Styron on his depression, Reynolds Price on his paraplegia, Kenzaburo Oe on his brain-damaged son. . . . To read these stories can deepen everyone's humanity. Too Late to Die Young can proudly take its place among these other important books.
Ragged Edge Online Mary Johnson
Masterfully pace and structured . . . Too Late To Die Young serves as both a memoir and a kind of revolutionary act itself.
South Carolina) The Post and Courier (Charleston
Johnson's rich, descriptive writing, humor, and Southern cadence make the book entertaining, thought-provoking, and meaningful.
The Tampa Tribune
She insists on being her own complicated person, a Southern lady, for instance, as well as a socialist, an atheist, a lawyer, and a born storyteller with a wicked sense of humor. . . . But her writing is so vibrant, so interesting, and so funny that you can't help but feel as if you're in her world, sitting beside her and hearing her story for yourself.
Adrienne Rich
A wonderful mix: a keen mind, exuberance, activist politics, along with a special brand of Southern women's wit.

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Product Details

Holt, Henry & Company, Inc.
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Read an Excerpt

From Too Late to Die Young:
Susan gets me on gospel radio because she likes the guys at the station. They're jokey and jivey and very Christian. I like their studio. It's all eight-track, 1970s technology. No fancy electronics here; the engineer turns dials and flicks mechanical switches. On one of their cartridges that's been reused and relabeled countless times, I lay down my spot:

I'm Harriet McBryde Johnson. I'm running for Charleston County Council.

You might know me as the wheelchair lawyer who pickets the telethon. People ask me why I do that. The answer is, human dignity is not for sale.

Why am I running for County Council? Because government, too, should treat every citizen with dignity and respect.

When the base closes, what kind of community will we be? If you want a voice in what happens, vote for me, Harriet McBryde Johnson, and the Democratic ticket.

I'll do my best for you.

"'I'll do my best for you,'" one of the radio men repeats. "Is that your slogan?"

It sounds pretty weak I think. "I don't think so. I don't think we have a slogan yet. Maybe we'll run a contest. Got any ideas?"

On departing, I give them the latest edition of the Temporary Campaign Brochure. I don't ask for a copy of my tape. I'd have no way to play it, and eight-tracks are in short supply. Every cartridge is needed in the Lord's service.

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