Top positive review
40 people found this helpful
Gives knowledge and hope to those who read it
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! :)