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Showing 1-10 of 88 reviews(Verified Purchases). See all 127 reviews
on September 12, 2012
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.

The other facet of his story is about his personal life, which for my purposes, was initially more important (this is now not the case. I love everything about the book!). A stone is not left untouched; Mattlin discusses his childhood background, his Big Deal (the spinal fusion he received), his parents' divorce, going to Harvard, his mother's struggle with ovarian cancer, struggling to find work and trustworthy caretakers, his personal life with his wife, and much more. From the sections about his wife, I learned about how his family made/makes it work--I now know that there is an example out there! Mattlin says towards the end of his book that he wanted ML, his wife, to preview the book and correct him if he was wrong about her perspective--she declined. I so wish that I could hear her side of the story, too. It would be interesting to see how they both reflect back on their life together.

Overall, a fantastic book. Mattlin's voice, yes he found it, makes you want to keep reading it (half a day, one sitting for me). His educated research doesn't give you that feeling that most autobiographies give you, that feeling that they just sat there and made up a bunch of shit for it to sell. You get the feeling that he's talking to you and trying to convey important messages. But you'll have to read it to find out what they are! :)
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on September 22, 2012
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. Decades of agitation and demands by courageous people with disabilities simply to be recognized for what they are -- fully human beings deserving of respect and all the rights and opportunities any American citizen should expect as a matter of course -- have changed this country for the better, allowing it to tap the potential and energies of this extremely large segment of the population. More important, like its predecessors and other contemporary civil rights movements, it has brought this country and all of us just a little closer to our founding ideals of equal justice under law, and universal opportunity for life, liberty, and pursuit of happiness.

But the account of the civil rights struggle hardly dominates the book, nor is that what makes it truly memorable. It's Mattlin's unsentimental straightforwardness and unsparing honesty about himself and the everyday material facts of his existence that lends this book its power and, occasionally, its deep humor. Everything he has accomplished has been made more difficult by his disability; but that disability seems to have been more than offset by a singular ability: an uncommon level of personal determination and a steadfast refusal to be put off by obstacles that would almost certainly deter most "normal" people.

Yet as "Miracle Boy" has grown older and his physical abilities, like a lot of ours, have very gradually degraded, his perspective on the world in general and his fellow people with disabilities in particular has broadened, and his ability to be introspective about himself has deepened, to the great benefit of his readers.

He'll never be a fireman. But he's a heck of a writer. Read this book; you'll think, you'll feel, and you may even learn something. But for Ben's sake, try not to be inspired...and try not to be too jealous.
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on September 5, 2012
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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on September 27, 2012
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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on November 13, 2014
Books such as this one remind me why I love memoirs so much! Ben was born with a serious, crippling health problem. Growing up with parents who encouraged him (and helped him) to find ways to move around in his world, he gained self-confidence and maintained a wonderful sense of humor about himself and his world. He finished public school, and made friends. He always had a heart for words and writing, and when he entered Harvard University, he wrote some articles for different magazines. Some of his works were regarding his disability, some were not. He spoke with his editors and prospective employers over the phone, and never mentioned that he was wheelchair-bound. As he grew into adulthood, the civil rights movement had moved from race to other discriminatory issues, including physical/mental disability. He became involved in the movement, writing articles and seeing more and more accommodations for the disabled in the public arena. He married, and fathered two little girls. His wife became his primary 'assistant' (he didn't like the term 'caregiver', and with all of his paid assistants he maintained the employer/employee relationship, never taking on the 'victim' role). Ben had years of good health (relative to his disability), and some times of serious problems requiring hospitalization. Through all of life's ups and downs, Ben moved forward and sought to maintain his productivity even in the face of increasing weakness and disability. Brutally honest about his life and his body, the book gives great insight into a strong personality trapped inside a fragile body. Loved it.
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on September 25, 2012
This is a can't-put-it-down book--the prose whips you along, characters enter and leave with vivid specificity, and insights and confessions both high and low coexist in an anti-inspirational narrative that inevitably inspires. This cheeky ivy-leaguer with what many would consider one of the worst medical diagnoses out there--SMA (spinal muscular atrophy)--provides dead-pan accounts of a New York City upper westside childhood; a bumpy ride through Harvard (those cobblestone streets); inevitable job discrimination and prejudice; the catastrophic consequences of the loss of one thumb muscle (i.e. porn freezes on the computer screen); evil and angelic personal care attendants; horrific hospital stays;and, oh-my-god, a heart-stopping love story. And then there's his willed, verging on the snarky, resistance to the disability civil rights movement pressing in on all sides, coupled with his profound relationships with some of the greatest leaders of that movement. I LOVED this book. File it in the category: the personal-is-political-makes-great-literature.
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on November 5, 2012
The book is details the struggles of an almost totally disabled individual to adapt and continue to live life as much as possible. The author grew up just prior to most of the laws requiring schools provide education and opportunities to handicapped children. So his parents and the author had to be insistent and often he was the only person in his environment in a wheel chair. The story is one of persistence and overcoming challenges. Ultimately the author graduates from Harvard, marries and has children. One of the most enlightening things I found in the book was the detailing of the need for his care--things that most of us are unaware of or would think about needing. The book informs the non-disabled community about how much effort it requires to overcome all the obstacles.
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on May 28, 2015
I enjoyed this book far more than I anticipated I would enjoy it. Truth in advertising: I read it because it was on my Kindle and I was traveling. It was on my Kindle because it was on some feed for books? or I bought it for my daughter? I don't remember? But there it was and I was on an airplane without WiFi. I am a physician, and was on vacation, so I wasn't really thrilled about reading anything related to work, sickness or disease. Ben, not surprisingly as a Harvard educated journalist, wrote fluidly and well. He was able to show, not tell. The description of trying to do research prior to the internet age without being able to write down his thoughts on index cards was an image that struck me. I recently had a brief spell on crutches, and have studied Cambridge, so the thoughts of managing those hallowed halls without full mobility truly gave me pause. Regardless, that isn't what made me give this a five star review. Ben made me laugh. I found myself relating snippets of the book to my family days later. That is telling of a tale well told.
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on July 8, 2014
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.

At the end of his memoir, Ben Mattlin, almost in passing, tosses off the names of three of his favorite writers of memoir: Frank McCourt, Mary Karr and Augusten Burroughs. They happen to be among my favorites as well.

Ben Mattlin resides, in my opinion, side by side with the best of the writers of memoir.

Like McCourt, Karr and Burroughs, Mattlin is scrupulously honest and matter-of-fact; he writes with clarity and vigor; and he has life-lessons worth sharing.

Woven in the narrative is the history of the disability rights movement. What we now take so for granted--the ramps, for example--were basic rights hard won. I was reminded of Reagan's opposition to items like the ramps on the basis of cost. The human reality, evidently, is that it is hard for most people to empathize and identify with "the other" and their basic needs.

Yesterday, just before I finished reading this book, I watched the recently released documentary LIFE ITSELF about Roger Ebert, the movie critic, who lost his entire lower jaw to cancer. Later it struck me as a sort of serendipity that I was experiencing Mattlin, a man whose mouth area is (almost) the only viable body part left after all the other parts have shut down over the years and another man, Ebert, who had lost precisely that part. Both men, Mattlin and Ebert, soldier(ed) on, dealing with the randomness of their respective afflictions in the absolute best way they can/could, making the most (to be trite) of less than ideal situations. Both men find/found ways around their limitations to continue to contribute meaningful works of literature and writing.

I highly recommend this book because, in my opinion, reading about real people, in real situations can create in the sensitive reader a heightened appreciation for others, for "the other." I am moved Mattlin's curiosity, his ingenuity, his drive to learn and grow, his intelligence, his sense of humor,his humanity.
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on May 24, 2015
The title "Miracle Boy" might suggest the book is an account of some saintly, offer-it-up (oh, sorry, that's Catholic) guy who is almost other-worldly in his courageous attitude toward his major disability. Hell, no! Ben writes about his life in a wonderfully brisk and sassy, at times even profane, style that the reader can practically feel. Humor? Absolutely, in almost every chapter. Pathos? Yes, but it's not slathered all over the book. Sex? There's sex, all right, both partnered and--uh, otherwise. As for the courage part--damn right, but he hardly has a choice in playing the cards he was dealt and he recounts what it involves in a casual and off-hand way, not as tragedies, but as problems to be solved. In this book you meet Ben, in all his physical helplessness, mental agility, and emotional health. Get it and read it and love it.
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