My name is Shane Burcaw, and I live in Bethlehem, PA. I was born with a disease called Spinal Muscular Atrophy that causes my muscles to waste away as I get older. I have been in a wheelchair since the age of two. Besides that, SMA has given me the supermodel physique you see in my photo. You should see me in heels.
I'm writing to tell you about my new children's book that was just published last week. It is a picture book called “Not So Different.”
Growing up, being in public meant dealing with constant stares from other children. Most kids rarely see people in wheelchairs, so when they saw me, their eyes opened wide and their jaws dropped with wonder. And since kids also have little capacity to filter their thoughts, the stares were often accompanied by silly questions like: “What’s wrong with you?” “Why are you small?” “Why do your arms look funny?”
There’s nothing wrong with curiosity, but I didn’t understand their curiosity as a little kid, which made it hurt. Constantly being treated like a mysterious spectacle as a child definitely impacted how I felt about myself. I’d sit at the dinner table and ask my parents why other kids were so confused by me. My story is not unique; I’m willing to bet most people with a physical disability know the feeling of being gaped at by little kids.
Fast forward twenty years to today. I’m 25 years old, and a large part of my career involves speaking to children about my disease. It’s one of my favorite activities, and I’ve learned so much along the way about how children understand disability. Today, instead of shying away from their questions as I did years ago, I invite kids to ask me whatever they are wondering about my life. The questions I get range from profound to bizarre: “Do you ever get bullied?” “Why is your head so big?”
“Not So Different” answers many of the most common questions that kids have about living with a physical disability like mine. It’s full of wacky pictures demonstrating how I live my day-to-day life, and it teaches kids that although I might look a little different, and do things a little bit differently, the truth is I’m just a regular person like them who is really not so different!
My goal is that parents and teachers will use this book to help children develop a deeper understanding of disability and life in a wheelchair. I believe that so many of the social stigmas surrounding disability come from an innocent lack of knowledge. I want to change that, and you can help by sharing this book with as many kids and parents as you can.
As of right now, “Not So Different” is available most places books are sold, but if you’d like a signed copy and want to support our nonprofit organization, you can preorder through our web store: https://laughingatmynightmare.com/shop.
Every purchase from our web store benefits Laughing At My Nightmare, Inc., which helps us spread our message at even more school speeches!
I hope you enjoy!