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Authors: Shane Burcaw
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my fear of not making friends is a universal one. However, in my mind, my wheelchair and disease would be the unfair cause of never making friends.
To combat this imagined scenario from ever becoming a reality, I spent a considerable amount of time obsessing about the way kids would perceive me when middle school started. I bought cool clothing, thinking that if I wore the same clothes as them, they’d have an easier time seeing me as their equal. I continued to let my hair grow, since being rebellious and having long hair would obviously be a sign to people that I was normal. I ran through potential conversations in my mind and practiced asking for help in cool ways that didn’t sound pathetic and annoying.
Things NOT to do when meeting someone in a wheelchair for the first time:
1. Spit on them
2. Tell them how great it is for them to be out in public
3. Hit them
4. Rustle their hair affectionately
5. Kick them
6. Throw them out of their wheelchairs
7. Push them down a flight of stairs
8. Call them “Buddy”
9. Steal their money
10. Challenge them to a foot race
Then middle school started. Sure enough, in my first class of the first day I was assigned a seat next to someone I didn’t know, a pretty girl who was definitely one of the popular girls at her elementary school. Upon realizing she had been assigned a seat next to wheelchair kid, the facial expression that she tried to secretly flash to her friends told me I had already been labeled as weird. My palms doubled their output of sweat. We sat next to each other in silence, as I discovered I was not nearly as brave and socially skilled as I had convinced myself to be in the weeks leading up to this moment. Say something you idiot.
“Hi, I’m Shane,” I said, my voice probably noticeably shaking.
“Hey, Shane, I’m Samantha. Do you like East Hills?”
That was an odd question for a pretty girl to ask. And she asked it with a clear condescending tone in her voice, like she was speaking to a toddler. She already thought I was mentally challenged.
“Yeah, it’s pretty cool, but the hallways are so fucking crowded! I accidentally ran over like four people on the way to class.” Cursing was an excellent way to show social normalcy. She noticed. Her giggle was nervous but genuine, like she wasn’t sure if I was being funny on purpose. I continued, “Hey, could you possibly be my helper for this class? I just need help with small stuff like getting my books out of my book bag. I would do it myself, but I’d probably end up on the floor.” She laughed, a little harder this time. There’s nothing like meeting someone who quickly understands my sense of humor. I watched her facial expressions and heard her voice completely shift over the next few minutes as she began to realize I was a normal kid. My sense of humor allowed her to see past my wheelchair. Getting people to see past my wheelchair was my one of my biggest concerns when I was young. This desire came from not only my interactions at school, but also a particular event during a summer camp for disabled kids that made me question how nondisabled people perceived me.
chapter 16
cripple camp
Right before middle school, I attended a weeklong summer camp for kids with muscular dystrophy run by the Muscular Dystrophy Association, which has helped my family tremendously throughout my life. (There are over forty types of muscular dystrophy, diseases that involve muscle deterioration in one way or another. My disease, SMA, falls under that umbrella.) Camp is one of the MDA’s biggest programs, taking place all across the country every year, allowing thousands of kids with MD to spend a week away from their parents doing things like swimming, boating, fishing, and tons of other stuff that disabled kids might not get to do too often. When my parents asked if I’d like to go, I was enticed by being away from them for a whole week. Sure, I’d be assigned a full-time counselor whose job was to keep me
To combat this imagined scenario from ever becoming a reality, I spent a considerable amount of time obsessing about the way kids would perceive me when middle school started. I bought cool clothing, thinking that if I wore the same clothes as them, they’d have an easier time seeing me as their equal. I continued to let my hair grow, since being rebellious and having long hair would obviously be a sign to people that I was normal. I ran through potential conversations in my mind and practiced asking for help in cool ways that didn’t sound pathetic and annoying.
Things NOT to do when meeting someone in a wheelchair for the first time:
1. Spit on them
2. Tell them how great it is for them to be out in public
3. Hit them
4. Rustle their hair affectionately
5. Kick them
6. Throw them out of their wheelchairs
7. Push them down a flight of stairs
8. Call them “Buddy”
9. Steal their money
10. Challenge them to a foot race
Then middle school started. Sure enough, in my first class of the first day I was assigned a seat next to someone I didn’t know, a pretty girl who was definitely one of the popular girls at her elementary school. Upon realizing she had been assigned a seat next to wheelchair kid, the facial expression that she tried to secretly flash to her friends told me I had already been labeled as weird. My palms doubled their output of sweat. We sat next to each other in silence, as I discovered I was not nearly as brave and socially skilled as I had convinced myself to be in the weeks leading up to this moment. Say something you idiot.
“Hi, I’m Shane,” I said, my voice probably noticeably shaking.
“Hey, Shane, I’m Samantha. Do you like East Hills?”
That was an odd question for a pretty girl to ask. And she asked it with a clear condescending tone in her voice, like she was speaking to a toddler. She already thought I was mentally challenged.
“Yeah, it’s pretty cool, but the hallways are so fucking crowded! I accidentally ran over like four people on the way to class.” Cursing was an excellent way to show social normalcy. She noticed. Her giggle was nervous but genuine, like she wasn’t sure if I was being funny on purpose. I continued, “Hey, could you possibly be my helper for this class? I just need help with small stuff like getting my books out of my book bag. I would do it myself, but I’d probably end up on the floor.” She laughed, a little harder this time. There’s nothing like meeting someone who quickly understands my sense of humor. I watched her facial expressions and heard her voice completely shift over the next few minutes as she began to realize I was a normal kid. My sense of humor allowed her to see past my wheelchair. Getting people to see past my wheelchair was my one of my biggest concerns when I was young. This desire came from not only my interactions at school, but also a particular event during a summer camp for disabled kids that made me question how nondisabled people perceived me.
chapter 16
cripple camp
Right before middle school, I attended a weeklong summer camp for kids with muscular dystrophy run by the Muscular Dystrophy Association, which has helped my family tremendously throughout my life. (There are over forty types of muscular dystrophy, diseases that involve muscle deterioration in one way or another. My disease, SMA, falls under that umbrella.) Camp is one of the MDA’s biggest programs, taking place all across the country every year, allowing thousands of kids with MD to spend a week away from their parents doing things like swimming, boating, fishing, and tons of other stuff that disabled kids might not get to do too often. When my parents asked if I’d like to go, I was enticed by being away from them for a whole week. Sure, I’d be assigned a full-time counselor whose job was to keep me
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