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

by Ben Mattlin

No one thought Ben Mattlin would live past childhood. But that didn’t stop him.

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.

Genres: Disability, Nonfiction, Memoir, Biography, Biography Memoir, Social Justice

234 pages, Kindle Edition

First published August 1, 2012

Reviews

[Michele]

Hearing the author on NPR moved me to laugh and cry. If his book is half as good as his speaking ability, it will be worth reading.

[Laura Mitchell · Rating 5 out of 5]

I loved this book! Told in the present tense, it is Ben Mattlin's personsal story juxtaposed with developments in the disability rights movement.

Mattlin was born in 1962 with spinal muscular atrophy, a severe condition that usually results in death long before adulthood. But Mattlin didn't die young, and thanks to a great deal of tenacity, creativity, family support and, yes, money (his own, his family's, and government programs), he attended and graduated from Harvard, married, fathered two daughters, and carved out a career as a writer and NPR commentator.

Now, I should say here that as a woman living with a disability myself (though much less severe than Mattlin's), I have long abhorred what I call "supercrip stories." You know—those "inspiring" tales of people with disabilities who do outstanding things. That's not to say that there aren't people with disabilities who deserve admiration for what they achieve. There are many of those, and I believe Ben Mattlin is one.

But this is not a supercrip story. And though discrimination and accessibility problems like those described here have affected most people with disabilities, this book is not an attempt to describe the full range of disability-related topics. Miracle Boy Grows Up is an honest and revealing memoir of a man with a severe disability, told against the backdrop of the developing disability civil rights movement.

Once a poster boy for the Muscular Dystrophy Association, Mattlin was unaware of the disability rights movement early on. In fact, as a child, he didn't identify at all with others who had disabilities. "I’m not so badly off as many people think I am," he says, recounting his views at the time. "I’m not. I’m not like other handicapped kids!"

But that attitude would change. (Years later, he would write a commentary critical of the Jerry Lewis telethon's "pity party" approach to fundraising.) While recounting his own battles to get the things and services he needed to live the life he wanted (the kind of life that most non-disabled people take for granted), he points to significant developments in the disability rights movement along the way. We also see how the movement helped elevate his own awareness of how a disability-unfriendly social and physical environment around him added to his physical limitations.

Reviewer's Disclosure: This book mentions some people I have worked with and some events in which I participated in my own efforts as a disability rights advocate. Among those is a panel presentation I did with Ben many years ago. (I think that was in 1998, but I'm not sure.) However, although I worked with Ben on some disability-related matters for a while, I never knew most of what he reveals here.

Ben is very honest in this book, openly stating some thoughts and attitudes that led a Kirkus Reviewer to criticize him for including " a litany of … grudges, from the Harvard dorm room he was promised but didn’t get, to his disagreements with his father over his financial support." The reviewer also complains that Mattlin "describes how nearly every personal attendant he’s had has failed him…."

These comments reveal more to me about the reviewer than about Mattlin's book. Failed promises of accessibility, financial problems and difficulties finding reliable, trustworthy and compatible personal care assistants are very real and sometimes life-threatening challenges for people with severe disabilities. Another subject that Mattlin addresses openly and frankly is sexuality, challenging the perception that people with disabilities are uninterested in or incapable of having sex. Mattlin should be applauded, not criticized, for showing how all of these issues have affected him.

I highly recommend this candid and engaging book to people both with and without disabilities.

[Ashley · Rating 5 out of 5]

Ben Mattlin was born with spinal muscular atrophy and grew up to write a book that has changed my perspective on those with disabilities and impairments forever. There is a great part of me that wants to call this book inspiring but I recall that Ben never wanted to be an inspiration. Throughout his entire life he only wanted to be equal and accepted. He discusses his disability due to spinal muscular atrophy very directly but is sure to convey to the reader that he never let it stand in the way of him leading his own life.

Ben's candid writing made me laugh out loud during some of his tales and then there were the moments when he made me cry. When he told the story of Baby Doe I wept. I told my husband and we both sat there simply wondering how anyone could treat a poor defenseless child that way. Ben remarked on the little things that used to bother him. For example, when he and his wife would go out to dinner the server would ask his wife, "And what will he be having?" Ben's mind was not disabled! He could speak for himself! He only had trouble with muscle control. It was insulting. I hurt for Ben. Here he was, an intelligent, humorous, kind, friendly, and yes, inspiring, person who was being treated as though he couldn't decide on his own dinner.

I have already recommended this book to everyone in my Education program because of the insights that it gave into the world of someone with a disability who wanted nothing more than to be accepted as equal.

[Tamar · Rating 3 out of 5]

I very much liked to read about being disabled in a different way than I am, and I think it gave me a lot of insight into living with attendants and into being a full-time wheelchair user. It also gave insight into the development of the disability movement and how so many things I take for granted had to be fought for and didn't exist when Ben Mattlin was young. Quite shocking!
What also shocked me is how Ben Mattlin, as the privileged person he is in all aspects other than his disability, still gets so much in debt. It makes me very anxious about how it must be to live with his disability when you're from a less affluent family, when you're Black, and/or an immigrant, and/or when you're a woman. I guess many people still ended up institutionalized. Wonder how that's now?

I do feel that he could have written more about his wife as a person. She very much feels like a flat character and I don't get much insight into her side of the story. Same goes for Mattlin's daughters.

[Alexis Pullen · Rating 3 out of 5]

Ben Mattlin's memoir of his life as a disabled person with SMA is an engaging, quick read. Despite the subtitle, the book only tangentially follows the disability rights revolution and Mattlin's involvement later in his life. As a child, Mattlin is sheltered from other kids with disabilities, by his affluent, New York family. It's interesting to see how his own prejudices towards disability, as well as blindness towards his own limitations evolves over the span of his life. I enjoyed his perspective, as well as his honesty and vulnerability. Still, I couldn't help but feel the tinge of hostility, irritation, and anger in his writer's voice throughout the work. I came away feeling less like he's incredibly optimistic, but more that there's something he's not saying. The most important point that I take away, as someone who has worked with severely disabled individuals, is the critically important nature of a support system. Mattlin repeats how lucky he is, and how he would not have survived his hospitalizations without his wife's loving care, and the emotional and financial support of his family. Most people are not so fortunate when faced with severe disability, and are left to the mercies of "the system". This underscores what I think is Mattlin's larger point about the ongoing and necessary work for awareness and equality of disabled rights.

[Lee Tyner · Rating 4 out of 5]

Probably more like 3.5 stars. The story is very compelling and very genuine (I sharply disagree with some of the other reviews). It is true that he wasn't always a follower nor agent of the movement, but so what? It's his right, just as it is to an able bodied person. The story is also very revealing and eye opening not just to how he dealt with it, but how society places a stigma on the disabled in ways you may not have considered. This part was with 5 stars. However....

A chronic problem with his writing style is verb tense. He'll drop into 1970 yet use present tense and then comment about his attitude in modern day and then drop back into 1970 all the while with present verb tense. This problem was throughout the book and left me confused, or at least slowed down, several times wondering: Then, or now? This issue was worth 2 stars.

Last, at times I felt like I was a hamster in a wheel reading the same thing over and over, waiting for him to get on with his point, and/or get out of the weeds and quit chasing rabbits. This seemed more prevalent the further into the book I read. This issue was worthy of 3 stars.

All together: 3.5 stars.

[Jessica · Rating 2 out of 5]

I feel as if subtitling this book "How the Disability Rights Revolution Saved My Sanity" is a bit disingenuous, as the author admits time and time again that he didn't even notice or care about the disability rights movement until he was in his late 30's-early 40's.

I'm left with "meh" feelings about this book - I admire the narrative of never give up, always ask, be assertive, and don't assume. On the other hand, I'm just left out in the cold and can't really find a connection. I wonder how much different this narrative would have been, or if the person would have been ever able to tell their tale, if he hadn't been born into a relatively wealthy family who had the financial and emotional resources to care for him. Has Mattlin triumphed over adversity? Hell yes! Has he had it as rough as other disabled people who didn't enjoy his relative privileges afforded by money (attending Harvard, father getting him writers jobs for investment banking magazines/firms) and access to health care? Well, there I can't be so sure.

[Warhammer Grantham · Rating 3 out of 5]

Did you want to read inspiration porn about a disabled person with an unconquerable outlook on life? Ok then look elsewhere. Ben Mattlin offers a brutally honest but amusing memoir of his life growing up with SMA(Spinal Muscular Atrophy), and building the attitude required to live with it as a combination of upbringing and stubborn necessity. Ben chronicles his life as a kid in a wheelchair, going to Harvard right as the disability rights movement was happening, falling in love, and getting a career. Throughout the whole book, the author's voice draws you in to the mind of the boy who becomes a man, all while dealing with a great deal more that folks who can move about under their own power, have to deal with.

[Julianne Smith · Rating 5 out of 5]

I am so grateful for miracle boy. I literally just finished it. I'm 32, live in the mid-west and have had SMA all my life. Except for SMA, our backgrounds are quite different. However, I understood much of the experiences Ben Mattlin generously described. I enjoyed the journey he allowed my to follow from childhood, college, parenthood and beyond.
It's rare to find a humorous yet strong voice who speaks about disabilities in a way that is so easily accessible. I'm recommending this book to anyone who wants to understand disability through our own eyes.

[Becky Roper · Rating 4 out of 5]

This memoir written by a severely disabled man chronicles his life along with the advances of the disability-rights movement. While not an activist himself, he benefited from, and is most appreciative of the advances. I most enjoyed his clear-eyed telling of the challenges of his life, and I appreciate the thought-provoking suggestions of how we can all deal with the disabled.

[Mindy · Rating 3 out of 5]

Fascinating memoir. Recommended for those interested in disabilities or who enjoyed Harriet McBryde Johnson's memoir.

(Library Journal review assignment)

[Cay · Rating 1 out of 5]

Not very well written. Last 30 pages were better.

[Anna McFarland · Rating 3 out of 5]

Book 19 mircle boy grows up by ben mattlin
No updates on titles or authors
Rating 3/5

Summary: Ben matlin is a normal person. Except he is sma spinal muscular atrophy. It's the weakening of muscles in the body. He describes the events of his life from his birth up to the present.

What I thought of it: I am not a person who reads autobiographies. I'm more of a person who likes to stay in a fantasy world. More specifically I like stories that can be believable but are not actually happening. This one was interesting. I felt like for a book that was about a guy you had a disability he didn't focus on it as much. To the point where he doesn't even say what he fully has or he was diagnosed with it until the first chapter. We know he does have a disability or something because he needs an attendant but that's about it. Instead I feel like he focuses more on like just everyday life around him. What's it like going to college trying to find a job after school meeting his wife and having kids ect. He does all that mixed in with how his disability plays in. I guess what I wasn't expecting was when moments when he would talk about dot-dot-dot yeah that's how I'm going to put it. There were moments where I would literally cringe and I was wondering why he put that in there. But there was some good humor I'll give him that much. I did like the fact that the book brought up some of the stuff we talked about in class like moral disability perspective about where a person has a disability because of sin as well as the part about about screening to see if an unborn child has Down syndrome. It wasn't the best book I ever read but wasn't the worst. It was a good book for this assignment. PS this is just a little funny extra I finished the book and my boyfriend asked if he could do the review and I said what what you can say about this book and he was like oh well it's the best book ever it can also be worn as a hat LOL

[Kathryn · Rating 4 out of 5]

I hesitate to give this four stars because it didn't have a consistent tense and point of view. It's a memoir that is written in the present tense, which is a risky decision. Once he started including occasional commentary from contemporary Ben instead of past Ben, things got muddled. Similarly, it is written in the first person for the most part, but also discusses groups and events that he didn't participate in. The overall effect was often confusing.

In the end, I bumped this up to four because of its unique tone, dry sense of humor, and candid portrayal of even the most vulnerable aspects of living with a progressive disability. I especially appreciated his descriptions of his evolving sense of identity and complicated relationship with the disability rights movement. I think anybody who copes with chronic health conditions, especially those without a cure, will relate to parts of his experience.

[Diane · Rating 3 out of 5]

Against all odds the author lived, while most children with his disability do not. Hard to read, but was quite informative and changed my mind about children with disabilities.

[Julia Rodas · Rating 3 out of 5]

Admirably crafted narrative, interesting life, worthwhile reading, marred by casual racism, worsened by audio emphasis on imitated “dialect” voices…

[Barbara · Rating 3 out of 5]

Why does everyone except his wife have a name? So this is what goes on in the mind of another person.

[Rori Rockman · Rating 4 out of 5]

The introduction was so important to my reading experience. In it, the author very clearly states that he is not intending for his story to be in any way inspirational. He's an ordinary guy with an ordinary life; however, he has a disability that introduces some challenges in his life and provided him with some experiences and stories that others might be curious to hear about. This book is about all the big ways that he's the same as anyone else you're likely to meet, and all the small ways that his life was a little different.

The reason this was so important is because I've read some memoirs by disabled people that were billed as "inspirational," and I never felt inspired reading their story, and at the end of the book I thought "What was the point of that?" But Mattlin does a great job of satisfying my curiosity. He does not shy away from intimate subjects like describing how he masturbates or describing another person's role in helping him get to the toilet to have a bout of diarrhea. I am so grateful to him for this. As someone interested in the disabled community, I know a lot of disabled people feel offended at overly personal questions and consider them an invasion of privacy. And of course everyone has a right to privacy, but the fact remains that people are curious and if you are willing to share stories about the topics people are curious about, it certainly is appreciated!

It was interesting to see the ways in which his disability affected him that I hadn't much considered, and also the ways that it didn't affect him that much. For example, Mattlin spent a lot of time talking about times when he was left in an uncomfortable position. When I consider full-body muscular weakness, I think about how difficult it would be to eat or go to the bathroom or entertain myself. But I don't typically consider how often I make a slight adjustment to the way I'm seated, or shift the way I'm lying in bed, and how agonizing it would be if I couldn't do it myself and the person helping me couldn't correctly position me. Another thing he talked about was the difficulty in doing research at the library as a student: even if someone gets you the reading material and turns the pages for you, you can't highlight passages or take notes or place sticky notes -- all that stuff has to be verbalized, which disrupts the flow of reading.

The main surprises for me were how little his disability seemed to affect his ability to make friends or date. Particularly considering that he was born in the 60s, when disabled people were still encouraged to remain invisible and hide any disability as much as possible, I would have considered an obvious and severe disability to be more of a hindrance than it seemed to be for him.

I do think the book got weaker as it went on. At first Mattlin seemed to be picking out highlights from his life that made a good story, whereas later on he seemed to be more recounting too much detail of any major event in his life. But even at the end, I still read every word.

[Lizzie · Rating 4 out of 5]

I most enjoyed Mattlin's strong, caustic voice during the raw and raunchy sections of his memoirs, which lifted the curtain on some of the most private aspects of his life. I was expecting a bit more of Movement history- there's not a lot here aside from scattered factoids about contemporary events (including a Judith Heumann shoutout, natch). Mattlin is unsparing and few people come off rosy and fresh- not his deliberately clueless brother, or his occassionally obliviously cruel father, or the parade of bumbling and often criminal assistants, or even his callow, sex-obsessed teenage self pursuing tail for the self-gratification and self-affirmation of it all. It was all very real, and told straight up, adding to the generous lashing of humor. I loved the parts with his mom to bits.

Despite portraying a deeply intimate marriage that weathered a variety of physical, financial, and psychological stresses, Mattlin does not do a good job with the romance. ML is clearly a center point of his life, and yet he chooses to keep many of the dynamics of that relationship under wraps, a delicacy that is all the more shocking for his cheerful disregard for traditional boundaries around the pitfalls of the human body. It is not often you read someone with no physical bashfulness but with some very high emotional privacy fences.

Mattlin's greatest asset is his voice, which enlives even the most mundane of moments. I believe I have also been primed for exactly such a voice narrating many of these same scenes of awkwardness, rejection, growth, and survival by all too many years of reading Lois McMaster Bujold. There were several eerie echoes of my favorite space opera romantic adventure hero, rebounded again by Mattlin's nerdish love of many things sci-fi.

A very quick read, compulsively readible, and completely worth it.

[Diane Lybbert · Rating 4 out of 5]

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.

[Anne · Rating 5 out of 5]

A writer no less than Jay McInerney praises the book and editors at CNN decide to feature Ben Mattlin...I can only add that I could not stop reading "Miracle Boy Grows Up".

In 1982 Ben Mattlin is admitted to a closed creative writing seminar at Harvard - not an easy feat for a sophomore - yet he is aware that he hasn't found his voice yet. 30 years later, writing his book "Miracle Boy Grows Up", he has finally found his voice.

It is a literary voice telling a story worth listening to: Ben Mattlin was born with spinal muscular atrophy, a genetic disease that confines him to a life in a wheelchair.

In his memoir, he describes his life in which he beats the odds: becoming a pioneer in his elementary school and his high school in New York and then Harvard. Ben Mattlin is among the firsts to attempt and accomplish a life in a competitive world created for able bodied people.

Ben Mattlin describes how he learns to navigate uncharted territory - although he sometimes feels "unmoored, lost at sea" - he succeeds at graduating "cum laude", moving to California and finding his career as a journalist. He also becomes an advocate for disabled rights.

One cannot but admire his extraordinary courage, persistence and ability to overcome obstacles.

Words certainly are his friends - he is an intelligent and perceptive wordsmith. Ben Mattlin has become a fine writer.

[Elizabeth Davis · Rating 5 out of 5]

An incredibly honest, unvarnished memoir. My four year old son has Spina Bifida and I picked up this book after reading Mr. Mattlin's NYT article "When Wheelchairs Are Cool". Throughout the book, the author charts the disability rights movement as he himself is growing up. I found this integrated history fascinating, especially when he described the waxing and waning influences as the various disability organizations struggled for relevancy and funding.

I found the passages about the struggles to hire, train and retain competent attendants therapeutic because we have also struggled with this delicate task. These relationships attempt to replace bodily functions that most people take for granted and are fraught with so many issues.

Mr. Mattlin's parents feature prominently in the book. It was heartbreaking for me to read about how his mom worked to instill a sense of responsibility over the wheelchair seatbelt to four year old Ben. I know that desperation over trying to get a young child to understand the vital importance of physical care. I learned something important from how his mother taught him to speak up for himself and advocate for his needs. I plan to work more on this important life skill more with my own child.

[Melissa · Rating 5 out of 5]

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.

[aizjanika · Rating 4 out of 5]

I rated this book four stars, because the author was able to share his deeply personal story in such a way as to make it seem almost universal. It's a human story--a coming-of-age-and-growing-older story that many will identify with, but he also shares the details that make his story and his perspective unique and compelling. I also enjoyed the parts about the disabled rights movement that were interspersed throughout.

I was bothered quite a bit, though, by the fact that the entire book is written in present and sometimes future tense. This can work well in some cases, but in this case, I found it grating and at times quite confusing. I'm not a fan of writing everything in the present tense like a Choose Your Own Adventure novel unless it really works for the narrative. In this case, I don't think that it did.

Overall, though, this was a quick and very engaging read. I set aside other books I was reading and read this in about two days. I highly recommend it in spite of the problems mentioned in the second paragraph. I think it's well worth reading.

[Rachelle · Rating 4 out of 5]

Humorously and intelligently written. A refreshing reminder that life is about loving, selflessness. Includes a recount of the change in American society, both legally and socially, in regards to individuals with disabilities from the perspective of a severely handicapped individual (whom you will often forget has a disability as he adheres to his mothers wisdom to never indulge in self-pity and to always take responsibility for himself). Yes, he does reveal some of his harsh views of those with learning disabilities at the beginning (as some readers have expressed concern for) but that is only his naive perspective during a younger period in his life and he will share with the reader how and why his views matured. Disclaimer: Not for young readers.

[Windy2go · Rating 3 out of 5]

I am guessing about the date I read this book. I must have forgotten to record it. What stays with me from the book is how amazing the author seems, confined as he is to a wheelchair throughout his life, yet generally determined, capable, and optimistic. His parents gave him the great gift of not treating him as if he were any different than his physically healthy brother. In turn, Ben Mattlin goes on to take a leading role in the disability rights movement. It was a well-written book with a lot of food for thought.

[Cristina Nolasco · Rating 5 out of 5]

Beautifully written book! The style of Ben’s writing made me feel as if I were listening to him in person. He communicated his thoughts in a very relatable way. He demonstrates perseverance and his will to project his ideas and use his talents. I was inspired by his sense of humor used when encountering himself with challenges that some of us may never experience.

I read this book before working with people with disabilities. It was refreshing and enlightening challenging us to be more conscious and less dismissive with how we live our lives and work with others.

[Shelby · Rating 3 out of 5]

I think it's cool that Mr. Mattlin introduces the reader to some of the big names in 'disability theory'/'disability thought'? I read the first half of the book really quickly, but the second half just started to wear on me for some reason. Someone's life is someone's life, and it doesn't seem right or fair to say that you didn't 'like' their story... but there was just something that bothered me about this book. That being said, I really admire the Mattlin family--especially ML.

[Ron · Rating 4 out of 5]

A memior by Ben Mattlin who tells of his life experiences as a victim of spinal muscular atrophy, a crippling nerve affliction that left him completely paralyzed and a quadraplegic. Told with honesty and candor, Mattlin brings into focus the dreadful reality of such a condition, both on himself and his family, but also what can be achieved through will power and determination. An outstanding book.

Kindle book. (L)

[Adrienne Mann youmans · Rating 5 out of 5]

A well-writen and important book. Lets us in on the obvious truth that people with disabilities are accessible and relatable, just like the rest of us. As with all infrequently encountered variations from whatever 'norm' we inhabit -- whether race, culture, religion, sexual orientation, etc. -- we need exposure, to counter our reflexive xenophobia. Thanks, Mr. Mattlin, for your honesty, humor, and openness.