by Shane Burcaw
Am I saying that if you’re in a wheelchair and you don’t wear shoes, you are an immature social outcast? No, of course not. Unfortunately, the kids at this camp ingrained in my mind the idea that physical appearance has a big effect on how others treat me. I hate to say it, but these kids made me understand how easy it is to look at someone in a wheelchair and write him off as socially awkward because he just doesn’t look normal.
Anyway, after my parents checked me in, it was time to take my luggage to my cabin, and to meet my personal counselor who would be playing the role of caregiver during the upcoming week. I was unbelievably fortunate in that my counselor was the chillest dude ever; he genuinely treated me like I was just one of his friends, which made saying goodbye to my parents a lot easier. Once we got settled and all the parents had gone home, I began talking to the other kids and counselors in my cabin. This is when I first met Tim.
Tim is a few years older than me, so during that week of summer camp, he was probably sixteen-ish, making him one of the oldest kids at the camp. I could tell right away that Tim thought he was God’s gift to the camp. He told jokes that weren’t funny and stories that were obviously not true; the other kids completely bought his bullshit, and Tim loved that kind of attention. The best way I can describe Tim for you is that his favorite band was Limp Bizkit.
We all went outside, and Tim felt it was necessary to show everyone how fast his wheelchair was. Cool Tim, my chair is fast too. Nobody cares. The most annoying part was that Tim was pretty popular among the counselors, but in the fakest way possible. They had to give him attention; he was constantly trying to impress them, and nobody was going to deny Tim the attention he demanded, after all, he’s in a wheelchair.
The fact that Tim had the same disease as me was really what made me hate him. I felt like I knew him better than anyone at the camp. I knew his SMA did not affect his brain and social skills, so why was he acting like such a tool? A tiny voice in the back of my mind kept saying, “You’re not so different from Tim yourself.”
It was so completely obvious to me when the counselors pretended to laugh at his jokes and pretended to believe his stories. Tim seemed totally oblivious to all of this, which made me nervous. Was I misinterpreting the counselors’ interactions with me as being genuine, when in reality they were really just humoring me the same way they humored Tim? Up until this point in my life, I felt like I was pretty good at reading people’s faces and their tone of voice to determine whether they were genuinely interacting with me, or if it was the fake “you’re in a wheelchair, so I’m being nice to you” type of interaction. Tim made me severely doubt myself.
On one of the first days of camp, our cabin went to the swimming pool for the afternoon. This meant that all the counselors had to carry their respective camper into the pool so we could “swim.” Tim immediately started telling anyone that would listen about how long he could hold his breath. I remember asking my counselor to carry me to another part of the pool where Tim wouldn’t annoy us. Tim continued telling everyone about how he was a master underwater swimmer or some bullshit like that even though his counselor wasn’t allowing Tim to show off his skill for fear that Tim would drown.
Later on, a female counselor I had become friends with was holding me in the water. We entertained ourselves by making fun of Tim and his obnoxious stories. I don’t remember exactly how it happened, but she dared me to challenge Tim to an underwater breath-holding contest. I talked to my counselor about it, and he was cool with it as long as I promised to tap his arm when I needed to come up for air.
So we made our way over to Tim and his counselor, and I casually asked Tim if he wanted to see who could hold their breath longer underwater. In retrospect, I have absolutely no idea why Tim accepted this challenge, but he did.
Ready, set, go! Both of our counselors plunged us under the water to start the contest.
At this point, had there been any onlookers unfamiliar with what was taking place, they probably would have called 911 to report two heinous individuals drowning disabled kids in a pool.
I kid you not, within five seconds I noticed Tim start to freak out underwater. His counselor must have noticed too, because he pulled Tim up for air right away. I was going to stay under as long as possible just to make him feel stupid for being such a dick about holding his breath. All of a sudden, from under the water I noticed people scrambling out of the pool. There was obviously something going on, so I tapped my counselor’s arm to come up for air. When he brought me up, I was completely horrified, yet slightly amused. Tim had thrown up in the pool, and was continuing to throw up all over himself as the counselors made a huge deal out of getting him out of the water. This was all too perfect. The vomit started spreading around the pool and everyone was disgusted beyond belief. The camp officials had to cancel swimming for the rest of the day, which upset everyone.
Real smooth, Tim.
Today, I feel pretty awful for hating Tim so much. He was just being himself, and I was too insecure to deal with it. However, this incident in the pool left me with the belief that I was never going to get along with other people in wheelchairs.
Luckily for me, the counselors at the camp soon realized I was slightly different from most of the other kids. We joked around and talked about things that I doubt they discussed with the other campers. On the last night of camp, the counselors let me stay up all night with them, just chilling and eating pizza while the other kids slept. For my 13-year-old mind, that was a pretty awesome experience, and it taught me that I had the ability and social skills to make genuine friends in a situation where they could have just been “pretend nice” to me because I was in a wheelchair.
chapter 17
the dance
Because camp took place the summer before sixth grade, it probably served as a confidence booster when interacting with new people like the hot girl who sat next to me that you read about earlier. As the school year progressed and spring approached, the infamous sixth grade dance became the hot topic of discussion. By this point I had settled in with a group of friends who teetered on the border of the “popular” crowd and the not-quite-as-popular-but-still-sociable-and-genuinely-funny crowd. One of those friends was my cousin Rebecca. Becca is my dad’s brother’s daughter, and even though we are the same age and only live a few blocks from each other, we didn’t see one another very often until middle school. She went to a different elementary school and was involved in sports because she was about 900 feet tall by the age of ten. Her parents were divorced, so our families only saw each other several times a year. We got together for holidays and occasionally on birthdays, but for whatever reason, Becca and I kept our distance at these family gatherings. Maybe she was afraid of my wheelchair, or perhaps I smelled bad. Whatever the reason, we just didn’t interact when our families got together. In fifth grade, I couldn’t tell you much more than Becca’s name, age, and that she was good at basketball. Then we had some classes together in sixth grade and discovered that we both found incredible pleasure in making fun of each other.
Becca and me. Apparently all Burcaws got the “extremely good-looking” gene.
Becca didn’t give two shits that I was in a wheelchair unless she could somehow use my disability to further insult me. Making fun of one another was the crux of our beautiful relationship. I asked her to close her mouth during lunch because her teeth made me gag. She asked if I needed my diaper changed in front of pretty girls. If you were to listen to a conversation between Becca and me, you might get the sense that we hated each other, but we understood that the constant insults hurled back on forth were not meant to be serious.
“Becca, can you get my laptop out of my book bag?”
“Can you stop being helpless and get it yourself?” she said.
“Can you brush your teeth for once?”
“Can you even brush your own teeth?”
As the sixth grade dance grew closer, all of my friends started to get very excited. For the few weeks leading up t
o the dance, our lunchtime conversations went like this:
“Did you hear that Ben asked Laura to the dance?”
“Did she say yes?”
“I don’t know. Laura was supposedly going with Chase, but then they got in a fight because he told Kaity that she was hot.”
“Oh my God! Seriously?”
“Who are you guys going with?” one of my friends would inevitably ask the rest of the table.
“Emily.”
“Hannah.”
“Obviously Taylor since we’ve been dating for three weeks.”
I sat quietly munching on my burrito, laughing when appropriate, joking when it felt right, but generally not contributing much to the conversation. My friends never questioned me about who I was taking to the dance. They all seemed to know I wasn’t taking anyone. I planned on attending, but I was confident that no girl would want to go with me, so I didn’t even bother going through the motions of getting my hopes up only to be rejected. Flying solo wasn’t the end of the world. Some of my friends were doing the same thing, including Becca, who could have taken any boy she wanted, but felt that the whole concept was rather silly. She and I decided to just go together, since we had the same group of friends, anyway.
The night of the big dance had finally arrived. Sweat had penetrated through the quadruple layers of Old Spice and was creating a tiny river down the side of my body, and I hadn’t even left yet. I may have been attending the sixth grade dance with a member of my own family, but that didn’t stop my mind from hyping this night up as a huge milestone in my quest for normalcy and acceptance. Not having a girlfriend to attend the dance with felt lame, but Becca and I would have an amazingly hilarious night despite that fact. Also, in the back of my mind, I held on to the hope of catching a pretty girl’s heart on the dance floor. I needed to be on top of my game.
I had to start by looking fresh. I can imagine getting a disabled person ready for a middle school dance is one of the most obnoxious tasks on earth. My dad knew how big this night was, and didn’t complain as I asked him to shower me, change my outfit several times, brush my teeth, help me do mouthwash and reapply deodorant, and comb my still-very-long-hair multiple times. It took us over an hour, which was an eternity compared to our normal routine of carelessly-grab-shirt-and-pants-that-probably-don’t-match-and-only-partake-in-personal-hygiene-if-absolutely-required. My dad was a champ for putting up with me. As much as I tried, nothing that I did made me feel attractive, which probably had a lot to do with the massive hunk of grimy, rusty metal that sat beneath me. Oh, well. I never envisioned winning a girl over with my looks alone.
My dad drove Becca and me to the dance in our accessible van. We joked along the way about ways that we could convince our friends that we were actually dating. Upon dropping us off, my dad wished us a good time and told us he’d be in the same spot to pick us up when the dance ended.
The school gym was dark and filled with bodies. Smashed into the center of the floor was a huge pack of kids, bumping and grinding to the unexpectedly loud music. Farther from the center floated many smaller groups of friends—some dancing, others talking and laughing. The perimeter of the gym was reserved for loners, chaperones, and the two nerds playing an intense game of Pokemon underneath a set of bleachers. I took in this scene and lost most of the confidence I had worked up. This was clearly an event for able-bodied people, and I’m not sure why I imagined a DANCE would be any different.
I do a mean Robot.
Friends noticed our arrival and sprinted over to us, hugging Becca and smiling and waving at me. Lizz tried to make conversation with me.
“Hey, Shane! Are you ready to dance?” she asked excitedly, performing a few cute little moves in front of my chair.
“Definitely! I’ve been practicing my moves for a few weeks.” I yelled, battling the loud music.
“What?!” she yelled back, leaning closer and putting her ear to my face. I said it again, trying to be louder, but suddenly realizing that my puny voice was no match for the roar of the music. “I can’t hear you! I’m gonna go dance!” she replied.
That sucked. It sucked more to look over at Becca and see that she and a few kids were in fits of laughter over a story one of them was telling. They were all perfectly capable of yelling loud enough to hear each other. My tiny body couldn’t pull it off. From that point on, my interactions became pretty basic. Lots of one-word responses, exaggerated facial expressions (which became my one and only way of eliciting any type of reaction in a conversation), and head nodding. People tell me today that I communicate really well with my facial expressions. I mastered that skill over the course of a few years in middle school, as it became my only way to communicate with friends at all the loud events young people often find themselves at. That night though, I felt particularly robbed of a great time. As my friends became aware of my volume difficulties, they (perhaps subconsciously) stopped trying to have conversations with me.
I danced with them, basically spinning my chair in circles and bobbing back and forth to the beat. We laughed and had a good time, but I couldn’t shake the feeling that I was one step removed from everyone because of my inability to communicate. I pretty quickly gave up on trying to win the attention of any girls. What was I going to do? Nod at them for three hours?
Near the end of the dance, Becca came up to me and said, “Hey, can you let your dad know that I’m going home with Nicole? She’s having a pool party sleepover. I already called my mom, and she said it was fine.”
“Sure!” I yelled, nodding my head. Listening to everyone’s conversation, I gathered that most of my friends were planning on sleeping over at Nicole’s house that night. She was rich and had a beautiful inground pool. Someone eventually extended an invitation to me, but my immediate response was, “I can’t tonight, I have plans. Sorry!” I didn’t have plans, but I didn’t want anyone to know.
The truth is that it was very difficult for me to sleep over at other people’s houses at that age. Sleeping in my chair doesn’t work, which meant I needed someone to lift me into a bed, as well as roll me from side to side throughout the night. Since I had never even met Nicole’s parents, asking them to assume this responsibility wasn’t something I was comfortable with. My other option was to go to Nicole’s and ask my dad to pick me up late so I could just sleep at home. Never in my life have I been able to make this decision without feeling like an enormous burden on my parents, since both of them have to wake up early for work each day. For that reason, my typical response throughout those years of my life was to just pretend I had other things going on. In reality, I’d be in bed by 10:30 p.m. so my parents could get a good night of sleep.
When my dad picked me up from the dance, he beamed with pride and asked if I had a good time. I told him I had, which wasn’t a lie. Despite some of the annoying aspects of my first middle school dance, I was still there, which felt like a big step towards achieving that much-desired sense of normalcy that my young mind so deeply craved.
chapter 18
fun on the short bus!
Normalcy, however, was at times elusive. Luckily, the funniest things in life are the abnormal. Throughout middle school, I was forced to ride the short bus, simply because they were the only buses that had wheelchair ramps. Everyone knows that the short bus is for kids with mental disabilities. Many people do not know that short buses are also for kids like me.
As you can imagine, I didn’t particularly enjoy riding the short bus, especially when I was young and insecure about fitting in with my peers, but as I got older I realized the events I observed on the short bus were hilarious, and my annoying situation became much more bearable. Whether it makes me a bad person is up for debate, but throughout middle school and high school, I spent most of my rides to and from school laughing discreetly to myself in the back of the bus.
Over the years, there were a few kids and particular experiences that have stuck with me. Some are funny. Some are disgusting. They are all completely bizarre. (All
the names have been changed, by the way.)
There was Adam, or as he called himself, Skunk. I kid you not, this kid was so proud of his unbelievable stench that he referred to himself as Skunk. The bus driver, Jim, who knew how to joke around with the kids in a way that wouldn’t upset them, greeted Adam every morning by saying, “Hey, Adam! Have you taken a shower yet?” Adam responded by laughing like a hyena that had just taken a hit of helium, and then screaming, “SKUNKS DON’T TAKE SHOWERS! THEY JUST GROOM THEIR SKUNK TAILS!”
Then Adam would giggle his way to the back of the bus and sit down in the seat in front of me, but on the opposite side of the aisle. It’s important to understand that I had a full view of Adam since my chair was a lot higher than the tiny bus seats, and because he sat across the aisle from me, rather than directly in front. Why is this important? Well, the things that Adam did during the bus ride were even more unusual than his entrance.
