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And she did lift me into the car, and it was suddenly so liberating — that she could lift me, and we could get in the car and go somewhere and didn't need to rely on anybody else. Ever since, there's been a constant balancing act. So we just assumed we would have children [and] do all the normal things. We did it not without some trepidation — figuring out what I could contribute as a parent. I think my real strength was entertaining the kids, telling them stories — I became a storyteller. There are a lot of aspects to being a parent, and I wanted to be a part of that — and I think I am and have been and continue to be an active, involved parent.
Read an excerpt of Miracle Boy Grows Up.
Accessibility links Skip to main content Keyboard shortcuts for audio player. Many infants with the disease don't live past age 2, but Mattlin went on to attend Harvard, get married and have kids. Facebook Twitter Flipboard Email. August 31, 3: Heard on Morning Edition. It's just baby steps from calling me inspirational. Which I'm used to, of course, but still. The next day he again comments on how much he enjoys my "positivity" and wonders what keeps me going.
You don't get angry? Gradually, it sinks through my self-righteous emotional shield, burnished by the disability-rights movement to rebuff all but the most specific forms of praise.
There's something different about what he's saying. My earnest young employee is commenting not about something over which I've no control — the fact that I've lived my whole life with a severe neuromuscular condition — but about my attitude, an attitude I've adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might've asked the same question if I didn't have a disability! I could've asked him the same question. An immigrant from a poor country, working his way through school, dedicated to helping others.
This time the attendant is inspiring me! Usually the "you're so inspirational" business is followed by something like, "You should write a book about your life. It would be so inspirational for so many people! Then you could go on Oprah! Nothing against Oprah, but let survivors of abuse, cancer, or war coax tears from readers' eyes.
Yet Jerry doesn't resort to the book-and-Oprah spiel. What he does do, that morning and for many others that follow, is get me talking. And that's when I realize something.
I do have a lot to say. And I do have a personal history that's not the same as everybody else's. It's a story of luck and persistence, by turns ordinary and extraordinary. And, upon further reflection, I come to see how closely my story tracks a surge of unprecedented advances in medicine, technology, and civil rights that people with disabilities have enjoyed and harnessed. Indeed, the synchronicity between that movement and my own is surely more than coincidental. Maybe it's my age. There comes a point when you get too old to care what other people think. 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: 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.
This part was with 5 stars. Miracle Boy Grows Up: 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. Book Summary Miracle Boy Grows Up describes how the author, an NPR commentator and professional writer who was born with spinal muscular atrophy, was expected to die in childhood but who with the support of a growing disability rights movement became one of the first students in a wheelchair to attend Harvard. Ben was born with a serious, crippling health problem. This review has been hidden because it contains spoilers. In fact, as a child, he didn't identify at all with others who had disabilities.
Ben Mattlin has become a fine writer. Aug 02, Elizabeth Davis rated it it was amazing. This review has been hidden because it contains spoilers. To view it, click here. An incredibly honest, unvarnished memoir. My four year old son has Spina Bifida and I picked up this book after reading Mr.
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 t An incredibly honest, unvarnished memoir. 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.
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. Jul 11, Jessica rated it it was ok. 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 muc 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 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? Well, there I can't be so sure. Sep 09, Melissa rated it it was amazing. 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 d Miracle Boy Grows Up is a must read for anyone. 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. Oct 22, aizjanika rated it really liked it Shelves: 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 writt 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.
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. 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 Humorously and intelligently written. 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. Not for young readers. Jul 24, Windy2go rated it liked it. 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 I am guessing about the date I read this book. It was a well-written book with a lot of food for thought. Sep 26, Shelby rated it liked it. I think it's cool that Mr. 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 That being said, I really admire the Mattlin family--especially ML. Sep 16, Logan Honea marked it as to-read. I would recommend this book, because it is a very inspirational and motivational book. This book is a first-person point of view of somebody who struggles with medical issues. It is an intresting way for him to communicate his ideas and struggles.
Ben Mattlin shows a great amount of perserverance, strugges, strenth, and love that helps get him through this hard time. In this book Ben shows that you can really do anything you out your mind too.
Jul 22, Adrienne Mann youmans rated it it was amazing. 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. Mattlin, for your honesty, humor, and openness. Oct 31, Ron rated it really liked it.
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. Not for me Aside from the unfortunate editing errors that I couldn't help but notice in the Kindle edition, this book simply failed to grab my attention.
It was a little too dry for me. Jan 23, Michele rated it it was ok Shelves: I wanted to like it.