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Author- Shane Burcaw Release Date: April 30, 2019
Disclaimer: (I received this ARC from Net Galley. My opinions are unbiased and my own)
Fact number one: Shane Burcaw is funny!
I really love that right from the beginning of this book we can get a feel for who he is, realistic and downright relatable. It is one of the things that keeps you reading because he's not pretending to be someone he's not.
Most of the chapters of this book deal with different experiences in his life and how those experiences are colored by SMA (Spinal Muscular Atrophy). The important thing to remember is that he is not to be pitied, he is here to educate you about how you see people with SMA or disabilities in general and how that sometimes can be hurtful, even when it is not the person's intention.
He talks of moments were Reddit considered a picture of him with animals a sob story, or how people see him and pray on him because they think he can't speak, or the fact that when they see him and his able girlfriend they immediately assume she is his nurse. I can't even begin to imagine going through that with strangers who claim to be well-intentioned on an everyday basis.
Other moments give you an insight into things you take for granted, like your feet, your sense of security, your ability to roll over in bed if you are uncomfortable. Some of the chapters where he mentioned feeling insecure in his home, I read full of dread. I could feel his fear, the way he described it and it is crazy to remember that he couldn't have moved to save himself regardless of what the situation turned out to be.
I am being purposely vague because all his stories are spoilers so I don't want to ruin the experience of reading this book for you. I liked that every story ended with a lesson whether it was a good or bad experience. Also, you never feel burdened by the topic of the book even though he is talking about very serious things and situations in his life. It is a testament to his personality and style of writing, that you can go through this book smiling at his revelations, or awwing at his girlfriend Hannah who seems to be a great human like he would say, instead of crying at some of the injustices he faces.
Rating 3/5 ❤❤❤
I enjoyed learning about his life and seeing the world from his perspective. I also think this book is a great resource for other people with SMA or people looking to understand how they might be coming across to disabled persons. I personally had an issue with the writing style because it was a bit stop and go. I would feel like I was getting into a story and then the chapter would be over. The experience format is cool because it feels conversational but it had no coherent order in the book, so I just felt like I was reading about random experiences, in bits and pieces. That's just me though, so I encourage you to read this book if it sounds interesting to you. If you are looking for a light read that teaches you a lot, this book is definitely it.