Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanityby Ben Mattlin
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
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.
- Skyhorse Publishing
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- 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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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!
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!
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.
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.
A must read. Quick, funny, moving, informative, gripping – if I do say so myself!