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Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity

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Overview

Ben Mattlin lives a normal, independent life. Why is that interesting? Because Mattlin was born with spinal muscular atrophy, a congenital weakness from which he was expected to die in childhood. Not only did Mattlin live through childhood, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin’s life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel that he was ...

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Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity

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Overview

Ben Mattlin lives a normal, independent life. Why is that interesting? Because Mattlin was born with spinal muscular atrophy, a congenital weakness from which he was expected to die in childhood. Not only did Mattlin live through childhood, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin’s life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel that he was disadvantaged at all, merely different. 

Miracle Boy Grows Up is a witty, unsentimental memoir that you won’t forget, told with engrossing intelligence and a unique perspective on living with a disability in the United States.

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Editorial Reviews

Library Journal
NPR commentator and freelance writer Mattlin was born with spinal muscular atrophy, a hereditary neurological disorder. He was not expected to live long—about half of the infants who show symptoms of SMA do not live past age two—but Mattlin was one of the lucky ones simply because he lives. This memoir details how he does so, including all the nitty-gritty details that curious readers will find themselves wondering about. He relates the circumstances of his life to the disability rights movement and shows how he benefited from the work of activists to create a world in which he was able to succeed. Mattlin is candid about his challenges (e.g., finding a job, hiring attendants) but he isn't looking for pity, just understanding. He explains, "Whatever I accomplish will not be despite my disability but with it." VERDICT The level of detail in the book may limit the audience to readers with an interest in some aspect of disability, but those who do pick up this memoir will find a unique perspective that compares with Harriet McBryde Johnson's Too Late to Die Young: Nearly True Tales from a Life.—Mindy Rhiger, Mackin Educational Resources, Minneapolis
Kirkus Reviews
Born with a severe neuromuscular condition, writer and NPR commentator Mattlin pens the story of his life so far. In 1962, Mattlin was six months old and still unable to sit up on his own. After years of visits to different medical specialists, he received a diagnosis of spinal muscular atrophy, an inherited disease that causes progressive, degenerative muscle weakness. While most people with this illness are unlikely to live to adulthood, Mattlin's story is filled with details of how he managed to beat the odds again and again. He not only survived childhood, but be became one of the first wheelchair-bound students to graduate from Harvard. He eventually married and had two children. Although he strives to make this memoir as free from self-pity as possible, what comes across is a portrait of a rather unpleasant man. While the author touches on the history of the disability movement throughout the book, the story gets bogged down by a litany of Mattlin's grudges, from the Harvard dorm room he was promised but didn't get, to his disagreements with his father over his financial support. He describes how nearly every personal attendant he's had has failed him--they are variously described as drunk, stupid, untrustworthy, crazy or some combination thereof. Mattlin also describes his sexual proclivities at uncomfortable length--e.g., how he manages to masturbate despite his muscular degeneration and his adolescent attempts at autofellatio, "a dirty little secret of the extremely scoliotic." It isn't until the final pages of the book--during which Mattlin discusses his hiring of an attendant who punctured his "self-righteous emotional shield"--that the author begins to open up in a genuine way. Unfortunately, it may be too late for most readers. Mattlin's life is inspiring, but his attempt at an unsentimental memoir falls short of the mark.
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Product Details

  • ISBN-13: 9781616087319
  • Publisher: Skyhorse Publishing
  • Publication date: 8/14/2012
  • Pages: 208
  • Sales rank: 786,810
  • Product dimensions: 6.10 (w) x 9.10 (h) x 1.00 (d)

Meet the Author

Ben Mattlin was born in New York in 1962 with spinal muscular atrophy, a congenital muscle-wasting disease. He graduated from Harvard in 1984 and is an NPR commentator and frequent contributor to many different financial magazines. He has written on disability and other topics for Self magazine, USA Today, the Los
Angeles Times, and the Chicago Tribune. He has also appeared on
CNN, ABC’s Prime Time Live, and the E!Entertainment Network,
amongst other venues, to discuss his disability-related writings. He currently lives in Los Angeles, California.
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Table of Contents

Introduction ix

Chapter 1 Two Roads Diverged in Apartment 2B 1

Chapter 2 Disability as a Social Condition 9

Chapter 3 Divorce, Bar Mitzvahs, and Preadolescence-Wasn't My Life Hard Enough? 25

Chapter 4 My Unfortunate, Life-Changing Incarceration 43

Chapter 5 The End of Childhood 60

Chapter 6 Maman Est Morte 76

Chapter 7 What I Gained and Lost in College 92

Chapter 8 If No One Notices a Disability, Does It Really Exist? 108

Chapter 9 Becoming More Disabled 128

Chapter 10 Nesting 146

Chapter 11 The Bubble Bursts 164

Chapter 12 The Ghanaian Connection 178

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Customer Reviews

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Sort by: Showing all of 5 Customer Reviews
  • Anonymous

    Posted November 8, 2012

    Just raced through this marvelous book, MIRACLE BOY GROWS UP ¿ b

    Just raced through this marvelous book, MIRACLE BOY GROWS UP – by a terrific story-teller! … Thank you for sharing your life with us. Write more!

    1 out of 1 people found this review helpful.

    Was this review helpful? Yes  No   Report this review
  • Posted September 19, 2012

    Maybe I should not speak for a "3 and 3/4 year old" wi

    Maybe I should not speak for a "3 and 3/4 year old" with SMA, but my grandson's response to Matlin's visuals, asking me to hurry up and read so I can answer his questions, is astounding.
    O. saw the cover. The dialogue began. "That man is big now. He not a daddy."
    "Oh yes he is."
    "How can he hold baby, change diapers?"
    "I'll let you know as I read the book."

    "How he sit on couch? He sit on couch like me? How can his granny put him on couch if he big man?"

    After that first day, I discovered the photos inside the book. O. was so excited that a big man with SMA could "have baby close. Very close ."

    "Oh, he in hospital like me!!!!"

    "I see him sitting on couch as big man. How he get there?"

    I told him I have to keep reading so I can fill him in.

    This book is a wonderful- and I'm only up to 1972. Matlin reveals how perceptive SMA kids are through his own childhood thinking and un-puzzling of situations. Such sensibility resonates with me - as O's granny. What a delight!

    Oh, read on! Read on!

    1 out of 1 people found this review helpful.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted September 9, 2012

    Hanging above my desk, to help me cope with life's little proble

    Hanging above my desk, to help me cope with life's little problems, is a handwritten note that says "No matter how hard it gets, remember--plenty of people would gladly trade places."

    The two biggest jolts I received from MIRACLE BOY were (1.) my life's problems really ARE little; and (2.) Ben Mattlin, who can scarcely move a muscle in his body, is probably not one of those people who would gladly trade places with me.

    Ben's memoir is a touching story of a boy (and man) with an optimistic spirit, a loving family, a heart of gold. His life has contained plenty of both the worst and the best luck that a person could ever expect. By the end of the book, one has the sense that Ben views his colostomy bag the way most of us view our hangnails.

    Full disclosure: I'm a good friend of Ben's half-brother and, by extension, a friend of his parents. But I can count on one hand the number of times I've shared even a few hours with Ben, and the last of these times was many years ago. I like the guy and his family, but it's fair to say that prior to reading this book I barely knew him.

    Those who have a personal stake in the disability rights movement will doubtless be moved on many extra levels by Ben's engaging, readable prose; and by his (sometimes startlingly) candid personal story. But any reader will find it easy to connect with the characters in Ben's life, many of whom would fit nicely into a great novel. The arc of Ben's relationship with his dad is a particularly touching one, revealing both the depth and the complexity of a father's love for a disabled son.

    This book is the funny, touching, and eye-opening work of a great storyteller. Moreover, it reminds us that though life is often hard, it isn't always -- and that's largely up to us.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted September 9, 2012

    Miracle Boy Grows Up is a must read for anyone. Ben Mattlin has

    Miracle Boy Grows Up is a must read for anyone. Ben Mattlin has an incredible ability as a writer to seamlessly weave the many layers of his life into a fabric that is not only a joy to read, but also material rife with life's BIG questions. How do we create true equality in our society? What does equality mean? What does it really mean to be a good parent? We all have our challenges, even physically, but where and why do we decide that some of us are truly "disabled"? Does having what society deems a "significant disability" mean that a person's life has less value? While these are very heavy questions that reader is asked to grapple with, Ben Mattlin's voice as a writer, sharing his many experiences growing up and moving through adulthood, truly connects with the reader. This was one of those rare books that left me sad when it ended, only because I wanted more. And yes, as other reviewers noted, at the very least, it will change how people view people in wheelchairs, or other assistive devices.

    1 out of 1 people found this review helpful.

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  • Posted July 27, 2012

    A must read. Quick, funny, moving, informative, gripping &ndash

    A must read. Quick, funny, moving, informative, gripping – if I do say so myself!

    Was this review helpful? Yes  No   Report this review
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