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

Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity - Ben Mattlin 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 attended school with other children and even says that in some situations he was considered popular. He had friends and hung out with them just like any other kid. He went to movies and had crushes on girls in class. He was a normal kid but he just happened to be in a wheelchair.

He graduated from Harvard University. He got married. He fathered two children. He lived a relatively normal life in so many ways, but then, there were the struggles.

He had to hire attendants to live-in and help care for him. He was unable to wash himself, dress himself, or turn himself over at night. At times, he struggled with finding someone trustworthy. I can't imagine the feeling of terror he must have felt to wake up in the middle of the night and realize his attendant had snuck out and he was all alone.

He struggled to find a job. At one point a potential employer even made the remark, "Yes, but you would be here to help us, not for us to help you" and turned him down for a job. Poor Ben.

Yet he defied the odds and overcame the obstacles. There was never any keeping him down!

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.

Yes, this book is absolutely a 5-star book. I couldn't find a single flaw in it (except for one small typo early in the book which I quickly forgave). 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.