by Shane Burcaw
During high school, I never once went to the nurse’s office to use the bathroom, because that would mean the middle aged school nurse would have to handle my shwang, which in my mind was far worse than holding it all day. Besides, I can hold my pee like it’s my job. However, none of my teachers knew this, so when Becca and I got tired of sitting in class, I politely asked to be excused to the nurse’s office, and Becca would escort me because I said I needed her to come with me, and nobody ever questioned that line of reasoning. Then we would walk around the school until we felt like we were pushing the limits of how long it should take me to pee.
Similarly, we often came up with ridiculous reasons for why I needed to leave earlier than five minutes before the end of class at the end of the day, such as, Shane has to get his jacket on, or the elevator is broken so we have to go outside and around the school to get downstairs, or Shane has to pick up something from the nurse. We could pretty much do whatever the hell we wanted by involving the nurse’s office in our excuse. Teachers automatically believed any reason I needed to go to the nurse, which I had marked up as a plus for being disabled.
Okay, so maybe I didn’t really mature very much in high school, but I had a good time!
In ninth grade I ran for class president and had to give a speech to the 600 kids in my class to persuade them to vote for me. Up to this point in my life, only my close group of friends knew that I was a completely normal person that happened to be in a wheelchair. Everyone else assumed that my wheelchair meant I was socially inept. Anyway, I wanted to start high school by making people aware that I was not either of those things. The following is an exact copy of the speech I gave on election day. I almost got in trouble because I didn’t read the speech I had handed in for the teachers to check. I don’t know why I still have this saved.
sup im shane. i like to skate, i run track and field and i am on the freshman swimming team. at least.… i was until the accident.. anyway my buddy called me and told me a tsunami was about to hit and wipe out all humanity. so i decided to grab my surf board. holy hell was that a mistake. while on a 75 foot wave i crashed into a cement wall. it is still unknown how and why there was a cement wall in the middle of the ocean, but that is not an important detail. when i awoke 4 years later from my coma, i was informed that i would never be able to walk again. i became a better man because of it. and in case you are stupid, the entire previous section is completely fictional. but for real i am in a wheelchair and if you decide to judge me for it, i will not hesitate to run you over until I’m sure you’ve stopped breathing. Vote for me!
People went crazy, and I won the election by a landslide.
High school turned out to be much easier than I had anticipated. When I was in eleventh grade, I signed up for dual-enrollment classes at the local community college because I wanted to “get ahead” and be done with school as fast as possible. I had to take two placement tests, reading and writing, before they would let me sign up for Intro to Psychology. I was very nervous because these were college placement tests and I was only in eleventh grade, but they were ridiculously easy.
Here is a sample question from the test:
Which sentence uses a period correctly?
A. I. Like. To. Eat. Pizza …
B. I like to eat pizza.
C. Pick B
D. Seriously, B is the correct answer, and you should pick it.
I finished the tests and printed out the results; I got a 100 percent on the writing and a 98 percent on the reading because the story about salmon migration patterns made me want to break the computer with my face.
Then, I had to take the test results to an old woman at her desk on the other side of the room so she could review my scores and tell me if I could sign up for the class I wanted. I drove over and awkwardly handed her the paper because I can’t really hand people things; I just kind of push them off my lap. She took it and said, “Okay, honey, let’s see how you did,” as if I was a toddler that had just used the toilet for the first time.
Her face instantly changed to astonishment and she said, “Wow, I didn’t expect this!”
“Uh, what?” was my reply. Was she joking? The salmon I had read about could have passed those tests. Then she realized how rude she had sounded and quickly added, “We just don’t usually get scores like this! Congratulations!”
I know my body looks fucked up, but I honestly feel like there is no physical indication that would lead people to think I’m mentally disabled, and scenarios like the above are funny, but incredibly annoying. But instead of letting it bother me too much, I had fun with the misperceptions many people had of me.
That same year there was a day when my friend Jon rode the short bus back to my house with me to chill after school. We were bored so he suggested we go on chatroulette.com. For those of you who have never heard of chatroulette (come out from under your rock), it is basically a web site where you can video chat with random people from all around the world. A majority of the people who use the site use it to satisfy their exhibitionist fantasies. In other words, you get paired up with lots of old, fat dudes jerking off. I wish I was joking. However, every once in a while you get the opportunity to have an actual conversation with someone from another state/country, which can be pretty interesting.
We went on chatroulette to see if we could find any good-looking girls to talk to, and to neither of our surprise, it was mostly dicks. Whenever we did come across fully clothed, normal people they usually said something along the lines of “What is wrong with that kid’s head?” because like I mentioned before, my head is disproportionately large compared to my body. A douche bag British kid asked me to pull my sleeves down because my skinny arms were creeping him out. We decided I would scare away any girls that we might potentially have the chance of talking to, so Jon positioned the laptop so only Jon could be seen in the chat window, our plan was to introduce me if someone seemed cool enough to not flip out.
Using this method, we came across a girl who looked to be about our age, and Jon started making small talk with her. I think she was from New York, but I could be wrong. She wasn’t drop-dead gorgeous, but she wasn’t ugly; her looks really had nothing to do with it at this point, we just wanted to talk to someone other than an old man penis. She told him she was bored too because she had to babysit her sister until her parents got home.
I whispered to Jon to introduce me and let me come in to the video. Jon was a jokester, so he capitalized on this opportunity to do something funny. He told the girl that he happened to also be babysitting someone—his mentally disabled cousin. Initially, I think he just said it to fuck with me.
When he turned the camera to me, I put my T-Rex arms close to my chest, crossed my eyes, and tipped my big head to the side. She completely bought it; there was no reason not to. I can make myself look very deranged. She also expressed how bad she felt for me and how nice Jon was for babysitting me. I sat there pretending to drool.
To be completely honest, I don’t know which one of us thought of our next move, so I will say we both thought of it/agreed to do it. Jon said something along the lines of “Yeah we are on here trying to find some boobs because this little guy has never seen them, but we’re only finding old men on here.” I made a sad face.
Try to understand how hard we were both resisting laughter at this point. The girl replied that I was so cute and that all the old men also repulsed her. In the heat of this comedic moment, Jon asked her if she felt like showing his mentally challenged cousin her boobs. I didn’t know what to do so I just kept my mentally challenged face on and tried my absolute hardest not to laugh; I just wanted to see her reaction to his question, and then I would stop and reveal that I was messing with her and hopefully she would find it funny.
As if this whole situation was completely normal and happened to this girl all the time, she stood up, took the laptop into her bathroom, AND TOOK HER SHIRT OFF. Hello boobs.
Jon fell off the chair he was sitting on. I started noncoheren
tly apologizing repeatedly in between laughs of disbelief as I closed the Internet browser as fast as my T-Rex arms would let me.
I had just pretended to be mentally challenged to make a girl show me her boobs. I don’t know if it gets worse than that in terms of abusing a disability.
We sat there stunned for a lengthy amount of time. Then we decided we were the worst people on earth and promised never to tell anyone ever.
chapter 21
an ode to darla
My insurance company covers a new wheelchair every six years. I’m guessing they didn’t just pull that number out of thin air—although it wouldn’t surprise me—but I’m sure there was some research that found a wheelchair’s life expectancy to be about six years. Imagine if that was your job: find out how much damage this wheelchair can take before it falls to pieces. I want that job. But I digress … (God, I love that phrase.)
Midway through high school, I became eligible for a new chair. For a few weeks, my parents, as well as my physical therapist, argued with me about getting a new one. Believe it or not, I really didn’t like changing wheelchairs. I pretty much hated it. But when I told people this, it took them some time to understand where was coming from. I said the word new but they heard the word better. However, new was not always better when it came to the seating arrangement that was such a crucial aspect of my everyday life.
One of the reasons that I was so against changing wheelchairs was that the able-bodied people who assist in the wheelchair selection and customization process have trouble understanding the intricacies of how I sit. For instance, a big point of contention was the fact that I lean so far to the right and put almost all my body weight on my right rib cage. It was a completely acceptable problem for the therapists and wheelchair representatives to be concerned about. However, and this is a big however, I physically can’t hold my head up or move my arms if my body is adjusted even several inches to the left. When I explained this to them, they essentially ignored me and played the we’re-specialists-so-we-know-better-than-you card. It was extremely frustrating, as they lifted me from one chair to the next, while I knew just by looking at each chair that it wasn’t going to work.
They said things like, “Well maybe if we reclined the chair, your body would naturally rest on the backrest rather than your side. Or maybe we should look into a head strap that will hold your head in place since you can’t hold it up when you’re in the proper position.”
I responded, “But I would literally have to be almost fully reclined all the time, and I can’t drive that way, so that wouldn’t work. Also, I definitely do not want a head strap.” Then came their line that filled me with so much anger that my eyes teared up, “Well, Shane, we might just have to compromise on this one.”
It felt like they were ignoring everything I said. On top of that, to be told I was going to have to wear a head strap from then on, with no say in the decision, was more belittling than you can imagine. The fact is, the specialists were usually wrong. They’ve been telling me since I was four that I’m going to get skin breakdown from leaning on my right elbow all day, and that we should look into a bunch of different methods to take pressure off my elbow, methods that would render my right arm unusable. Every six years I fought them off and somehow convinced them that my elbow would be fine. Twenty-one years of leaning on my right elbow have gone by, and guess what, not once have I had any breakdown of the skin.
With a new wheelchair on the way (a process that would take four to five months because of stupid insurance hassles) I felt like the proper thing to do was take some time to honor the valiant life of my soon-to-be old wheelchair. We’d been through a lot together; some fun, some shit, but all worth remembering. So I wrote her this letter:
Dear Darla,
The time has come to say goodbye. But before you go, let’s reminisce about all the memories we’ve shared.
I don’t actually name my wheelchairs, which always astonishes people. My wheelchair became Darla about fourteen seconds ago.
There were the countless feet that we have run over together. Most of the time it was an accident, but sometimes we did it on purpose and disguised it as an accident. Other times we ran over feet because people asked us to, not in a fetishy kind of way, more of a, “Run over my foot I want to see if it hur—OH GOD! GET OFF! GET OFF!”
There was the time we stayed outside in the summer downpour against all reasonable logic, and you broke down for three days. I had to sit in a very old, very uncomfortable, manual wheelchair while you were being repaired. Andrew parked me in the corner and told me I was in timeout probably a hundred times during those three days. Without instant Netflix, I probably would have died.
There was the time we were in the car together, not strapped in (because we like to live on the edge), and mom had to slam on the brakes and you rocketed towards the front of the van, since I had also forgotten to turn you off. I broke my big toe as we collided with the driver’s seat, so that was a learning experience. We still don’t strap you in, though, because we still like living on the edge, but at least I now remember to turn you off.
There was the time you threw me out of your seat when I ran over a soccer ball with you. The broken femur I suffered put me out of commission for a month. I still kind of hate you for that, but forgiveness is a process.
There were all the times we were an awesome street hockey goalie. Your 400 pounds of steel and brute force, combined with my catlike reflexes and determination to win made quite an impressive team.
There was the time the street in front of our house froze over and we had races on the ice until my entire body was frozen solid.
There was the time I missed the birth of my first-born son because I forgot to charge you the night before. (That never happened, but I have missed countless events because I’m an idiot and almost never remember to re-juice my battery at night.)
There was the time I burned holes in your controller interface because I wasn’t paying attention while playing with fire. That’s what I get for having such a fascination with fire.
We have traveled hundreds of miles together. We went through puberty together. We made friends together. I can never thank you enough for all that you’ve done for me. You will never be replaced. You will never be forgotten.
Unless, of course, if my new chair is a lot cooler.
chapter 22
femur destruction
When I was in eleventh grade, I was forced to take an adaptive physical education class, much to my dismay (I just wanted to be in a normal class with my friends). This class consisted of two mentally challenged students and me. Not to imply that there’s anything wrong with people who are mentally disabled, but honestly, both of these kids consistently smelled like they had atomic bowel movements simmering in their pants, and all they ever talked about was Disney movies. (Don’t get me wrong, I love Disney, but I don’t need to hear the storyline of Finding Nemo recounted to me over the course of an hour every single day of the week.) It was difficult for me to be enthusiastic in that situation, especially when my friends relentlessly joked that maybe I belonged in that class.
Gym class has always been a challenge for me. When I was younger, I could safely integrate myself into whatever game our class was playing with only some minor adaptations. My friends always picked me to be on their teams. I never had to experience the trauma of being picked last. If we played a game that was particularly difficult for me, like Frisbee football or gymnastics, I would happily offer to sit out and be the “coach,” which basically just meant sitting on the sidelines heckling and critiquing my friends’ performances. But as we matured and entered high school, the level of play and competitiveness increased significantly. More often than not, I would voluntarily choose to sit out and watch. If I did play, I knew that I would be a weight for my team to carry, ultimately hurting their chances of winning. Losing sucked, and I didn’t want to be the one responsible for it. At the same time, it started to become dangerous for me to participate in f
ast-paced sports now that my friends were much taller and heavier than me. There were several occasions where I narrowly avoided death when students crashed into the side of my chair.
After a few days of the new adaptive PE class, I got over my distaste because I realized that I would be able to participate a lot more in this class, since I didn’t have to worry about volleyballs or basketballs flying at my face at ninety miles an hour. There were no competitive games in this class. We went bowling and played beanbags and did modified versions of aerobics. Our gym teacher, Mr. Kremus, was an awesome dude who shared my love for sports, so we often chatted about the Phillies while the other students played. My aversion to adaptive gym was further soothed when a few older cheerleaders volunteered to help out in the class. I stopped chatting with Mr. Kremus and spent most of the class talking to them.
On a particularly warm day in October, our gym class decided to go outside. Usually this meant a painfully boring nature walk around the perimeter of the high school, but for whatever reason I asked if we could bring a soccer ball out to mess around with, which is kind of ironic in hindsight, since Mr. Kremus was the only one in the class who could actually kick the ball.
We went to the tennis courts and Mr. Kremus took turns rolling the ball to each one of us. My method of passing the ball back to him involved driving my chair at the ball and bumping it with the front base of my wheelchair. I quickly became bored and asked him to give me some full-court passes that I would attempt to control and then pass all the way back. Piece of cake. All was going well and the cheerleader teacher assistants were impressed with my driving abilities. Then my gym teacher decided to kick me a different ball that we had brought out. This ball was much softer than a normal soccer ball, so by the time it reached me on the other side of the court, it was carrying very little momentum, not enough for me to pass it all the way back to him. I stopped the ball with my wheel and then backed away from it until I was about twenty feet away so I could gather some speed before I made contact with the ball.
