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

~ (Author) "I'm three or four years old..." (more)
Key Phrases: New York, Secret Service, South Carolina (more...)

Editorial Reviews

From Publishers Weekly

It's hard to believe that one Charleston, S.C., woman, from the seat of her wheelchair, has faced off President Reagan's Secret Service detail, disrupted a National Democratic convention, joined disability advocates in Cuba and—for 13 years straight—protested the Jerry Lewis muscular dystrophy telethon. Indeed, folks with a sentimental attachment to "Jerry's kids" should start at chapter one, where Johnson explains how it felt as a youngster to watch a televised "childhood death sentence" every year. Johnson, who was born with a congenital neuromuscular disease, wants kids with disabilities to grow up "prepared to survive," not merely waiting to die. Equally problematic for the spirited lawyer are media heroes like the late Christopher Reeve, who revived "telethon melodrama" by displaying himself as "a disability object, presumably tragic but brave, someone to gawk at." Johnson, whose law practice specializes in disability advocacy, has a personal assistant, a motorized wheelchair and a supportive circle of family and friends that make her active, satisfying life possible. Readers inclined to feel sorry for people with disabilities, to offer them prayers or a pat on the head—Johnson has endured both—should spare them the very real burden of providing "disability awareness training to everyone who happens by," and read Johnson's feisty book instead.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

From The Washington Post

A person who experiences a terrible personal tragedy and chooses to write about it faces a daunting challenge. Though every detail of the sad and difficult journey is searingly meaningful to the afflicted writer, will anyone else care? Or will the distant reader think the misfortune is merely repellent and shrink away, relieved that so awful a fate did not afflict him?

In Too Late to Die Young, Harriet McBryde Johnson has overcome this problem with her essential wit, humanity and pluck. This is a transporting tale about a determined and attractive woman with congenital neuromuscular disease, who has never walked, who expected to die young and yet who has gone on to a distinguished career in the law, an often fun-filled life as a brassy activist for the handicapped and a rich existence with friends and colleagues in the mossy insouciance of Charleston, S.C.

This is a book full of surprises. Johnson puts us on notice at the outset that she has a wry eye for the "natural" world. She rejects the "formulaic narratives" that we have constructed featuring handicapped people as "stock figures" to be pitied and at the same time praised for their courage and inspiration to others. Though her spine may be horribly twisted, though a simple tumble from a wheelchair may turn into a life crisis, she argues for her humanity in the fullest and most equal sense. She is prickly and feisty. She is not to be trifled with.

And yet there is great value in knowing what the life of a fragile figure, imprisoned in a wheelchair and unable to swallow solid food, is like in modern America, especially the America that has been considerably improved by the Americans With Disabilities Act of 1990. The logistics are formidable: the need for caregivers, the navigation of streets and buildings, the simple acts of getting into bed or going to the bathroom, the desperate risks that may lurk around any corner. Life for the handicapped is pretty elemental.

Johnson escorts us into what she calls "cripworld" or "cripdom" with bubbly good cheer, almost daring us to feel sorry for her. No authority, no impediment seems to stymie her. As an undergraduate at the University of South Carolina, she took on the Secret Service and Ronald Reagan when the police invaded her private space and tried to shut down her protest of the president's visit to her campus. Eight years later when she was assistant city attorney in Charleston, she became a leading figure in a protest against Jerry Lewis and his pity-inspiring commercial telethons.

"We don't want pity," she quotes a fellow protester against the Lewis bathos as saying, "Pity gets in our way when we are looking for jobs and a place in the community."

She fought for her dignity and her space as a delegate to the 1996 Democratic National Convention when she was alternately trampled and then shut in by a cordon of buttocks. "Keep your butt out of my face," she demanded. She deplored the way that Christopher Reeve was used at the convention. "There he is, Charlie McCarthy," she writes. And in 2002 at Princeton, in a quite fascinating debate, she confronted animal-rights philosopher Peter Singer and his genocidal argument that society would be better off if disabled people like her did not exist. The essence of the interchange was the question of whether the life of a disabled person is inherently less happy and valuable. She won.

Her tales are generally told in a chatty style. This works for the most part, though I wish the Southern lady, in turning the tables on all those Yankee writers who have tried to reproduce Southern dialect, had not tried to reproduce the speech of the New York cabdriver. "I take you to Foity-foive Foity-sixth, and if that dun't woik, we can troy something else."

Her foray into elective politics in the form of a run for the Charleston seat on the County Council is hilarious and unforgettable. She ran a contest for a campaign slogan and eventually came up with: "Vote Harriet. What the hell, why not?" Who could resist voting for such a candidate? "Our politics can be ceremonial and stately," she writes about courtly Charleston, "but no one would call them pretty -- even when the azaleas are in bloom." Try putting into that mix a wheelchair atheist with dangly earrings and a platform of gun control, abortion rights and the right to burn the flag. She lost.

When she turns to her role in a court case involving the Americans With Disabilities Act, and later to her debate with Singer, the serious person beneath the chat is fully on display, along with the seriousness of the issues and the discrimination that handicapped people in America face. To make the abstract issues of the courtroom real and immediate, she follows with a chapter on a wheelchair accident that she once suffered at a conference in Tucson. This is a terrifying story. Every movement by emergency personnel had to be just right, with dire consequences for the wrong move, and the medication at the hospital had to be exact for a unique patient. In a curious twist, it was Johnson herself who directed every move, despite being crumpled in a ball on the ground and in terrible pain. She was the one in charge.

There is a small but discrete growing 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, Morton Kondracke on the Parkinson's disease of his wife, Milly. Though the specific nature of the difficulty varies in these books, they all touch on common themes: fear, pity, anger, depression, shame, risk, relation to the outside world. To read these stories can deepen everyone's humanity. But they are also especially useful to the millions who quietly endure the same or worse situations and are desperate for some small insight into how to cope. Toward the end of Johnson's fine book, she is upset that someone has complained about her being a difficult person.

"Oh, no," her father replies. "You're easy to deal with. As long as you get exactly what you want." Brava.

Too Late to Die Young can proudly take its place among these other important books.

Reviewed by James Reston Jr.
Copyright 2005, The Washington Post Co. All Rights Reserved.

See all Editorial Reviews

Product Details

• Hardcover: 272 pages
• Publisher: Henry Holt and Co. (March 10, 2005)
• Language: English
• ISBN-10: 0805075941
• ISBN-13: 978-0805075946
• Product Dimensions: 8.5 x 5.5 x 1.2 inches
• Shipping Weight: 15.2 ounces
• Average Customer Review: 4.9 out of 5 stars  See all reviews (10 customer reviews)
• Amazon.com Sales Rank: #819,815 in Books (See Bestsellers in Books)

Customer Reviews

Most Helpful Customer Reviews

11 of 11 people found the following review helpful:

5.0 out of 5 stars No Snivelling for Nickels, April 11, 2005

By	Michael T. Bailey (Portland, OR USA) - See all my reviews (REAL NAME)

Rarely have I read a book with so many compelling reasons to be read. First, it is a wonderful read, full of fabulous prose, compelling personal stories and humor. Second, it addresses topics that currently transcend just a "disability" story. For people just recovering their sensibilities after the excesses of the Shaivo case, or others of the "better dead than disabled" school the simple "normalcy" of the author's life will entertain, shock and amaze you. This woman is, afterall, just like most everyone else. With the exception that the author does not let you forget that she is a southerner, proud of Charleston, fond of regional cuisine and appaled by such things as confederate flags and pity.

But what makes Johnson's tale stand out is her personal analysis of mainstream culture's preordained attitudes on disability. Whether she is trashing the "telethon-pity-do-gooder' ethos or demonstrating the limits of freedom for a person with a disability in a for-profit economy, Johnson rejects most commonly held views and specifically the "snivelling for nickels" school of so called advocacy that forces people to become more and more dependent on the whims of public policy decisions.

There is nothing tragic here. In fact, Johnson is very, very funny. Disability has been around a long time but rarely has it been portrayed with such honesty, humor and analysis. Do yourself a favor ... read this book!!

9 of 9 people found the following review helpful:

5.0 out of 5 stars A Provocatively Tilted Perspective , August 15, 2005

By	Bruce Cline "Just a Reader" (Littleton, CO USA) - See all my reviews (REAL NAME)

This new book by Harriet McBryde Johnson, a civil rights attorney in Charleston, SC and disability activist, is a must read! Her book, Too Late to Die Young, provides insight into aspects of her life and career, but the author states upfront that "This book doesn't have a tidy message." Ms. Johnson is a gifted writer with a provocatively tilted perspective that is worth hearing. She accurately describes herself as a story teller in the great tradition of southern story tellers. I knew her stories were worth reading when, early on in the book, in describing a German doctor's bedside overnight care, she wrote "Now I remember how he kept vigil at my bedside so my parents could sleep and then fell sleep himself. As I listened to his deep, barrel-chested rumble, I imagined he was snoring in German." Later in the book, Harriet, after having noted that her normal viewpoint of most people is at crotch level (due to her posture), described her first impression of someone she met: "It's love at first sight - at my first sight of his shoes." Wonderful!

This easy to read book (a mere 258 pages) includes the bulk of the text of Unspeakable Conversations, a 2003 New York Times Magazine article she wrote that described her conversations with Princeton Professor Peter Singer about his beliefs that the severely disabled, in some circumstances, can justifiably be killed. Interestingly, she is conflicted about the accommodating and courteous man versus his "evil" ideas. She acknowledges that she stands outside the radical mainstream simply for having engaged Mr. Singer in a conversation. Sundry other topics this self-described "crip" covers are her personal crusade against telethons, her atheism, her battles with the Secret Service, caustically amusing anecdotes from the 1996 Democratic Convention in Chicago, a trip to Cuba, and battles with a New York Times photographer who wants to shoot her nude ("nekkid" in her parlance) and does -- but not for publication, and many more amusing and unsettling stories.

If you want to read a sweet story about a courageous and noble fight against disability that profiles an individual who overcomes great obstacles to achieve self-fulfillment, this IT NOT the book to read. Johnson`s book isn't about her disability (adamantly so)...but the fact that she is disabled inescapably colors her stories in powerful ways. You won't necessarily fall in love with Harriet, her politics, or all of her causes, but I think you will love her passion for what she believes, what she does, who she is, and why she does what she does. Ms. McBryde is a new and profound voice (at least to me) that is worth listening to.

9 of 9 people found the following review helpful:

5.0 out of 5 stars America Needs Crips!, April 19, 2005

By	William B. Loughborough (Goldendale, WA USA) - See all my reviews (REAL NAME)

In her "Unspeakable Conversations" piece, Johnson distills all the Disability Rights Movements' often academic arguments into "We enjoy pleasures...We have something the world needs."

In so doing, she frees herself (and us) from the depressing statistics about bigotry/discrimination/incarceration/murder and instead makes the importance of this human rights struggle's triumph seem to have a chance of success.

It's a completely different approach than Rachel Carson's "Silent Spring" but with any luck could have a similar effect on society.

By telling stories that have been honed through repeated smaller-audience repetitions, she gets the essentially exultant message of our shared humanity across in great style.

If you wondered "why the caged bird sings" (thank you, Maya!), this collection provides lots of answers. From the heights of chutzpah of invoking (with absolutely no basis) a set of bodyguards from the Fruit of Islam through the prima donna encounter with the Times' photographer (and the tasty accreditation of her in the acknowledgements), she lays bare why we hope her rationality/humanity might even sway Prof. Singer from unfortunate sociopath to advocate.

Love.