An Entertaining and Provocative Memoir

books:

	• Too Late to Die Young: Nearly True Tales from a Life Harriet McBryde Johnson Henry Holt and Co., 2005 - 272 pages average customer review:based on 8 reviews view larger image
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highly recommended

a brisk ride into disability rights

The chapters in this book are arranged chronologically, but each is a discrete story. The episodes varied enough so that I was never bored: Ms. Johnson protested telethons, resisted a search of her dorm by the Secret Service, ran for office, served as a delegate at the Democratic National Convention, visited Cuba for an international conference on people with disabilities, argued in a jury trial, and more.

Her views on disability as a civil rights issue aren't presented in a didactic way; they become clear to the reader as she confronts her opponents. I liked being privy to the details of her experience, even though she presents herself as nearly always right. While I read I was thinking that she came off as SO sure of herself that I would find her overbearing and a little obnoxious in person. However, she acknowledges the thorniness, and clearly isn't out to be the reader's best friend.

Other than that note, I felt myself in good hands. I have a better understanding of what it's like to need and live with a personal assistant. I was familiar with the basics of disability rights, but the book got into nuances I hadn't considered-- the pressures and trade-offs in Cuba, where genuine intentions for equality butt up against severe economic limits, for example. And it reinforced ideas that non-disabled people glide over: most of us will be disabled sometime. Disabled people aren't necessarily more "terminal" or "suffering" than the rest of us, because frankly everyone suffers and dies. And if that sounds depressing, don't worry: some of the stories in this book were so funny I had to read bits out loud to my spouse.

This is a four- instead of a five-star review because I didn't feel I quite got a fair view of the author's opponents; it was just a little too one-sided, although that enhanced some of the humor. But the book was still well-written and fascinating. Definitely worth reading.

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A Provocatively Tilted Perspective

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.

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An Entertaining and Provocative Memoir

While I disagree with a fundamental premise argued in the book, I do recommend it for many reasons. First of all, the author can write! She has filled the book with interesting and unusual experiences, described them with wit as well as passion, and she challenges people like me on some basic assumptions and conclusions. I do hope readers of this book will follow up with Peter Singer's Writings on an Ethical Life (referred to in Harriet Johnson's book) in order to hear Singer's opinions in his own words.

Voice of Disability Rights

This has been a good year for disability rights in terms of publications. First, Mary Johnson published Make Them Go Away and now we have Harriet McByde Johnson's much anticipated Too Late to Die Young. Read together these texts provide a powerful one two punch for the disability rights movement in an era which has seen the courts gut the Americans with Disability Act. Both authors have been champions and leaders of the disability rights movement and each are gifted writers.

Harriet McBryde Johnson is a gifted story teller--although I wanted to savor the text and make it last I was too spoiled to do so. I read the book cover to cover the day I received it. Now, I am going back to re-read each and every chapter. Each story told resonates at some level regardless of the subject matter. What truly struck me the most was that my life is not so different, that I am not so unsual, and that the bigotry and discrimination I encounter on a daily basis is no different from what other disabled people face. I am not the only one that is subjected to unwanted attention and grossly inappropriate comments. I am not the only one that found Christopher Reeve comments about disability offensive. I am not the only one who is treated poorly when I travel on an airline. In short, discrimination against the disabled is rampant and it is heartening to know others are experiencing and fighting against this. To know that I have two gifted authors on the side of equal rights lets me not only feel better about myself a feel less alone but know the future, in spite of the courts, will be better than the past.

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Thank You Ms. McBryde-Johnson...

As a child, Harriet McBryde Johnson never thought she would live a long life. At least that is what the telethons on television kept saying. However, she has. Yet, this is not a "triumph over disability" story. It is a story of a woman who is living her life fully. From a law student schooling the University of South Carolina on the subject of civil liberties to experiencing a disability-themed conference in Cuba, the reader is taken on a journey in which he or she just might view disability in a different way by the end of the book.

This book was really powerful for me. I was born with Cerebral Palsy. However, it has not been until the last couple of years that I started feeling comfortable with myself as a person with a disability. I read this book as part of a class I took this semester and I'm very glad I did. Stories like these remind me that disability is not a negative and that we are worthy of full, rich lives.

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reviews: page 1, 2

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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