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Authors: Shane Burcaw
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alive for the week, but living without them still felt like a step towards independence. However, at that age, nothing made me more uncomfortable than being surrounded by other people in wheelchairs. I desperately wanted to show the world that I was normal despite my disability. Looking back, I think this frame of mind was further solidified by my week at summer camp.
There was another kid at this camp who had the same exact disease as me; we shall call him Tim. I’m going to try my best to be as honest and fair as I can when I describe Tim, but you have to understand, during this week of camp, Tim was my archfuckingnemesis. I hated Tim. Today, I realize I probably didn’t give him enough of a chance, and my opinion of him was shaped by my 13-year-old mind, so there is a good chance that Tim is actually a very cool dude (doubt it). However, this was certainly not the case back then. We’ll get to Tim in a little bit.
When I arrived on the first day of camp, the first thing I noticed was that all of the other kids were, or acted, younger than me, which instantly gave me second thoughts about letting my parents leave me here for a whole week. I could smell immaturity in the air. While my parents got me signed in with the camp officials, a bunch of wheelchaired-kids chased each other around, wielding balloon swords. It was obvious that a few of them were young enough that balloon-sword fighting was an acceptable and normal thing to be doing. However, a couple of them were at least as old as me, if not older, and it bewildered me how they were getting such a huge kick out of PRETENDING to stab other kids with their balloon swords. I remember wanting to scream at them, “It’s a balloon! It won’t hurt if you stab each other! What are you guys even doing?” I immediately disliked every kid at the camp.
Another observation I made in the first few minutes of arriving to camp was that almost none of these kids had shoes on. Some had only socks; most just let their bare feet flop around in the breeze. All of them had severely atrophied ankles like me, but I wore splints that held my feet straight during the day and over my splints I wore normal shoes. I wore shoes because I often went out in public, where wearing shoes is the socially acceptable behavior. Additionally, I was well aware that my atrophied feet look weird to other people. Gross, atrophied feet hanging out for everyone to see were just another reason for people to be hesitant about engaging me as a normal human being. I started to feel extremely uneasy as it dawned on me that none of these kids understood this concept. My young mind started racing. This meant that these kids probably didn’t have too many friends, which meant they probably didn’t understand how to have normal human interactions, which was why they were all acting so immature! It all clicked in my mind. Look, I feel completely fucked up for thinking this way and for judging all of them so quickly, but if I’m going to be 100 percent honest with all of you, I have to admit that my judgments were actually pretty accurate, which blew.
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
There was another kid at this camp who had the same exact disease as me; we shall call him Tim. I’m going to try my best to be as honest and fair as I can when I describe Tim, but you have to understand, during this week of camp, Tim was my archfuckingnemesis. I hated Tim. Today, I realize I probably didn’t give him enough of a chance, and my opinion of him was shaped by my 13-year-old mind, so there is a good chance that Tim is actually a very cool dude (doubt it). However, this was certainly not the case back then. We’ll get to Tim in a little bit.
When I arrived on the first day of camp, the first thing I noticed was that all of the other kids were, or acted, younger than me, which instantly gave me second thoughts about letting my parents leave me here for a whole week. I could smell immaturity in the air. While my parents got me signed in with the camp officials, a bunch of wheelchaired-kids chased each other around, wielding balloon swords. It was obvious that a few of them were young enough that balloon-sword fighting was an acceptable and normal thing to be doing. However, a couple of them were at least as old as me, if not older, and it bewildered me how they were getting such a huge kick out of PRETENDING to stab other kids with their balloon swords. I remember wanting to scream at them, “It’s a balloon! It won’t hurt if you stab each other! What are you guys even doing?” I immediately disliked every kid at the camp.
Another observation I made in the first few minutes of arriving to camp was that almost none of these kids had shoes on. Some had only socks; most just let their bare feet flop around in the breeze. All of them had severely atrophied ankles like me, but I wore splints that held my feet straight during the day and over my splints I wore normal shoes. I wore shoes because I often went out in public, where wearing shoes is the socially acceptable behavior. Additionally, I was well aware that my atrophied feet look weird to other people. Gross, atrophied feet hanging out for everyone to see were just another reason for people to be hesitant about engaging me as a normal human being. I started to feel extremely uneasy as it dawned on me that none of these kids understood this concept. My young mind started racing. This meant that these kids probably didn’t have too many friends, which meant they probably didn’t understand how to have normal human interactions, which was why they were all acting so immature! It all clicked in my mind. Look, I feel completely fucked up for thinking this way and for judging all of them so quickly, but if I’m going to be 100 percent honest with all of you, I have to admit that my judgments were actually pretty accurate, which blew.
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
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