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Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity [Kindle Edition]

Ben Mattlin
4.8 out of 5 stars  See all reviews (89 customer reviews)

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Book Description

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.


Editorial Reviews

Review

"Mattlin is candid about his challenges (e.g., finding a job, hiring attendants) but he isn't looking for pity, just understanding.  ... Those who do pick up this memoir will find a unique perspective that compares with Harriet McBryde Johnson's Too Late to Die Young." --Library Journal

"Quite delicious ... Mattlin's timing is perfect, never over-analyzing or dwelling too long on any one subject. ... A compelling writer... poetic without being sentimental." - Roxanne Furlong, New Mobility magazine, January 2013

"Born with a severe neuromuscular condition, writer and NPR commentator Mattlin pens the story of his life so far... 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." -Kirkus Reviews

"An insightful, poignant, light-hearted and often hilarious memoir ...  Mattlin's resilience, his curiosity, and his steadfast refusal to see himself as a victim are inspiring; his prose is deft, wry and self-aware.  Like many of the best memoirs, this one brings you inside a beautiful mind."  - Jay McInerney

"Ben Mattlin could be called many things: Iconoclast, sidesplitting, and wise, among them.  Tn Miracle Boy Grows Up, Mattlin demonstrates perhaps his greatest skill--as a master storyteller."
 - Lawrence Carter-Long, National Council on Disability

"Mattlin tells the fascinating twin stories of his own life and the history of the disability rights movement. ... Deeply intelligent, utterly honest, funny, irritable, raunchy, companionable ... it is a love story, the story of a son, a father, and writer.  This book is a pleasure."  - Elizabeth McCracken

"In Miracle Boy Grows Up, Ben Mattlin spins the limitations of his genetic disease into literary gold. He tells his story with grace and candor, each beautifully crafted sentence illuminating not only his rich inner life but also the complex history of the disability-rights movement."  - Hamilton Cain, Author of This Boy's Faith

"Fantastic! Funny ... interesting ... beautifully done!" - Jolie Mason, "Access Unlimited," KPFK radio, March 13, 2013

About 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 financial magazines. He has written on disability and other topics for The New York Times, 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, among other venues, to discuss his disability-related writings. He currently lives in Los Angeles, California.

Product Details

  • File Size: 830 KB
  • Print Length: 208 pages
  • Publisher: Skyhorse Publishing; 1 edition (April 26, 2013)
  • Sold by: Amazon Digital Services, Inc.
  • Language: English
  • ASIN: B008TSNRLO
  • Text-to-Speech: Enabled
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  • Lending: Not Enabled
  • Amazon Best Sellers Rank: #203,009 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
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Customer Reviews

Most Helpful Customer Reviews
27 of 27 people found the following review helpful
5.0 out of 5 stars Gives knowledge and hope to those who read it September 12, 2012
By Emery J
Format:Hardcover|Verified Purchase
I came across Mattlin as I was desperately searching for information on "mixed ability" relationships. My partner has SMA and has since a child and I am able-bodied (or TAB). I was worried about whether or not we could make it work, whether I would be able to handle it; the list of worries go on and on...This book eased my worries, but also gave me more than just information on mixed ability relationships. The historical research and presentation about the disability rights movement fostered my interest in disability advocacy and gave me a thorough background of the movement.

Mattlin's story is about him growing up and, like I said, the disability rights movement. He shares the challenges that he faced in a time where people with differing abilities from the mass culture were still stigmatized and discriminated against. Throughout the book, both the readers and Mattlin learn just how lucky he was to come from the background he did. A few times, he gets a glimpse into the world of other disabled people at hospitals, rehabilitation centers, camps, etc...He discovers that not all of them have parents who advocate or even want them. You learn of the case of "Baby Doe"--two parents were allowed to starve their child to death because it had a disability. Luckily for readers and for Mattlin, that did not happen to him. There are now legal protections against this, but there is still a cultural battle against prenatal testing and the ability to abort a child simply on the fact that they will be disabled (I go back and forth on this as an extremely pro-choice person). For someone who didn't really know much about the disability rights movement aside from the ADA, Mattlin provides a great explanation of what happened, when it happened, and the context in which it happened.
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18 of 18 people found the following review helpful
5.0 out of 5 stars It's hard to be a superhero in a wheelchair September 5, 2012
Format:Hardcover|Verified Purchase
As a kid, Ben loved physically invincible superheros, but being born with spinal muscular atrophy put a crimp in that as a career plan. That's what the book is about.

Written in a warm and funny style, Ben talks about the situations created by his health, his interactions with those more ambulatory (but less funny) than himself, and the obstructing curbstones of love and parenthood that we all might face.

I'd recommend this book to those who:
1. know someone in a wheelchair, but don't know how to act around that person
2. have an interest in disability rights
3. are ambulatory, for now anyway
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14 of 14 people found the following review helpful
5.0 out of 5 stars More than inspiring. September 18, 2012
Format:Hardcover
I have always enjoyed books dealing with the triumph of the human spirit, stories about people overcoming huge challenges and coming out on top. But Miracle Boy is so much more. Superbly written with insight and humor, author Ben presents a gripping tale of his and his family's incredible journey. I read it on a long plane ride...got home exhausted but stayed up finishing it. Miracle Boy has indeed grown up...and into a fine writer. May he continue to share his literary gift for inspiring, informing, educating...and most of all, entertaining readers. Looking forward to "Miracle Boy Goes to Hollywood."
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12 of 12 people found the following review helpful
5.0 out of 5 stars Illuminating, Humorous, Powerful Autobiography September 22, 2012
Format:Hardcover|Verified Purchase
Ben Mattlin is a professional journalist, a Harvard graduate, husband to an attractive accomplished woman, and father to two daughters, and he lives in Los Angeles. So by any reasonable standard, he is a disgustingly accomplished human being with a pretty sweet existence. Far worse, he has accomplished all this without ever taking a step. He complains about being seen as a heartwarming inspirational story by people who don't know him, but if you ask me, he need not worry. To be frank, his story made me wonder what the hell is wrong with ME and what I have been doing with my own life. Tip: Don't let your spouse read this unless you want him/her to start looking askance at you 24/7 with a gaze that clearly says, "Why are you on that couch watching Dog the Bounty Hunter when you could be running down freelance work or publishing an extremely flattering portrait of me?"

All right, now to be serious about this very, very good book.

"Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity" is a revelatory account of the author's life (to date) against the broader background of the revolution in recognition of disability rights in the United States. If you are like me, you will have had very little previous consciousness of this neglected movement, which has been quite comparable in scale and significance to the other great civil rights struggles of the past century. (We've all heard of Martin Luther King and Gloria Steinem; until this book, I had never heard of Ed Roberts or the Rolling Quads.)

51 million Americans have some sort of disability; as Mattlin notes, each of us is merely temporarily ambulatory.
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9 of 9 people found the following review helpful
5.0 out of 5 stars Real Life, Real Honest September 27, 2012
Format:Kindle Edition|Verified Purchase
Get past the title. This isn't the schmaltzy yarn about a "super crip" that Miracle Boy suggests. And though the author makes many references to his evolving relationship to the disability rights movement, it isn't a strident, pedantic lecture about social justice. At its heart, Miracle Boy is a disarmingly honest accounting of the author's struggle to create and maintain the kind of normal, independent life we all wish to have.

As the father of two disabled adult children, I understand full well the barriers Mr. Mattlin faces each day, most of all the critical importance of having pleasant, honest, dependable assistants to maintain full independence.

Miracle Boy accomplishes the primary purpose of any well written memoir. It allows you to understand what it is like to live in another's shoes.
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Most Recent Customer Reviews
5.0 out of 5 stars I loved this book!
Told in the present tense, this is Ben Mattlin's personal story juxtaposed with developments in the disability rights movement. Read more
Published 18 days ago by Laura R. Mitchell
5.0 out of 5 stars A remarkable look at the life inside a disability with a parallel...
I love memoirs. The vicarious experience of another's life has never ceased to fascinate me. A good memoir will enlarge my vision and understanding of the human condition. Read more
Published 2 months ago by M. DeAnn Morris
5.0 out of 5 stars Gave me a new perspective
This is a candid and no holds barred (sorry if that sounds clichéd) book. It made me laugh and cry as I explored the world through Ben's perspective. Read more
Published 4 months ago by Julie Turner
5.0 out of 5 stars I recommend this book
I laughed, I cried, I am enlightened. Very honestly written and I'm happy to recommend this book. Complements to the author.
Published 4 months ago by Mom in OK
5.0 out of 5 stars Enjoyed every page; really well written.
Really well written. I enjoyed every page. Really eye opening for me to read the struggles of growing up as a disabled person. Read more
Published 6 months ago by Marcel E. Meth
5.0 out of 5 stars Extremely Important Perspective
Mr. Mattlin's candid and real writing is powerful, and enlightening. On top of that it was very interesting to read about his life. Read more
Published 7 months ago by RAarka
5.0 out of 5 stars Fascinating, Loved it!
This book was on a list of required reading for an exam in an HR course. We were to choose one of the books and I picked this one since my girlfriend works with disabled children... Read more
Published 9 months ago by mitchell
5.0 out of 5 stars From cover to cover, brilliant
Ben Mattlin has written a thoughtful, sensitive, elegant, humorous and honest account of his amazing life. Read more
Published 11 months ago by Alicia
5.0 out of 5 stars Honest and Insightful
Although I won't give it away here, I must say that the final line in this book made me want to laugh and tear up with joy at the same time. Read more
Published 13 months ago by Charles Freericks
5.0 out of 5 stars Extraordinary book - a literary voice telling a story worth listening...
A writer no less than Jay McInerney praises the book, editors at CNN decide to feature Ben Mattlin and all other reviewers here at Amazon consistently recommend the book as deeply... Read more
Published 13 months ago by Anne Clasen
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More About the Author

BEN MATTLIN is an NPR commentator and a frequent contributor to INSTITUTIONAL INVESTOR and FINANCIAL ADVISOR magazines, among others.

He's written for THE NEW YORK TIMES, SELF magazine, USA TODAY, the LOS ANGELES TIMES, the CHICAGO TRIBUNE, and WashingtonPost.com, and is a former contributing editor at the late WINDOWS IN FINANCIAL SERVICES, DEALMAKER, BUYSIDE, and INDIVIDUAL INVESTOR magazines.

Non-print credits include the Mark Taper Forum, Blonde and Brunette Productions, and the children's television program BIKER MICE FROM MARS.

He has a nice butt, too, but you'll never see it because he's always sitting in a wheelchair.

Born in New York City in 1962 with spinal muscular atrophy, a congenital muscle weakness, Mattlin graduated cum laude from Harvard University in 1984.

His writing about disability-related causes led to appearances on ABC's PRIME TIME LIVE, CNN, and E! Entertainment Network, and radio interviews on KKFI and KPFK, Los Angeles, and KSLC, Salt Lake City. He's also been quoted in THE WALL STREET JOURNAL, U.S. NEWS & WORLD REPORT, and PENTHOUSE.

Mattlin blogs at www.benmattlin.blogspot.com (please follow!) and occasionally Twitters.

His memoir, MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, will be out in August 2012 from Skyhorse Publishing.

He lives in Los Angeles with his wife, their two daughters, a cat and a turtle.

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