About 5 years ago I was studying to be a jeweller. I was also working as a casual relief teacher in several different special needs schools. Every winter this one particular school would call me in to teach in the same class for a week while the regular teacher was on camp.
The first year I taught there I met a boy called Dylan*. What struck me most about Dylan was that he was running around and playing football and carrying on perfectly fluid conversations with the staff, a bit unusual to see at a high-needs special school. I asked one of the other teachers about him. She told me he had a degenerative disease similar to Muscular Dystrophy which basically means that his muscles were slowly deteriorating until eventually he’d die. Probably before he was 20 years old. I’d never met someone like this in a special school before. He was a completely cognitive, active, behaviourally appropriate 15-year-old. Wearing trendy sneakers with gel in his hair. We spent the afternoon playing an intensely competitive game of basketball.
The second year I taught Dylan, he was in a wheel chair. He could still push himself around but his speech had begun to slur. He could still tell me to shut up when I teased him about his stupid sideways cap and he could still try to convince me to let him watch M-rated movies in class. He could also still bear weight on his legs just enough so that he could go to the toilet on his own. It sometimes took him 45 minutes to do it, but he did it.
The third year I taught Dylan he was in a motorized wheel chair that he controlled with the little movement he had left in his arms. He could no longer eat and had to be tube fed. He also couldn’t see anything unless it was ten centimetres from his eyes. I put my face inches from his and with a big smile I said ‘Hey Dyl! Where’s your lame baseball cap?‘. His eyes focussed and unfocussed and focussed again. The corners of his mouth twitched upwards in a brief smile. I heard the faint words drift from his stiff lips ‘Shut up!‘. He was still in there. Later that day the burly male assistant in the room needed my help to take Dylan to the bathroom. When he was settled on the toilet he beckoned me to come close to his face. He whispered in my ear ‘Please turn around.‘ I quietly excused myself and asked the assistant to yell for me when he needed help getting Dylan back in his chair. I’m really not an emotional person at all. I never cry. But that moment broke me a little. Dylan broke me a little. This gorgeous, funny, intelligent young man whose body was failing him. Failing him to the degree that he hadn’t taken a shit or piss on his own for the last two years. This amazing kid, who at the age of 17 politely asked a young woman (who was hired to help him) to leave the bathroom so he could maintain a tiny shred of independence in our short friendship. He held on to every scrap of dignity he had until his body literally ripped it away from him. He never stopped trying. To do things that most of the world don’t even notice that they’re doing.
I don’t like to write about that part of my life because it’s not mine to own. I don’t feel that I have the right to tell the stories of these kids and their families but Dylan’s a really cool kid. He’d think it was awesome if he knew I wrote about him, like he was famous or something.
He doesn’t know it but he serves as this constant reminder to me to harden up. If I get cranky because I don’t want to go to the gym, I think of Dylan. If I don’t get a part in a play that I auditioned for, I think of Dylan. If I don’t land an awesome writing gig that I really wanted, I think of Dylan. I get to walk, run, dance, fall over, get hurt, have sex, earn money, travel and hopefully grow old. I’m not a person who takes anything for granted but if I ever catch myself having a moment where I’m feeling a little too sorry for myself, I think of Dylan. I don’t have this bullshit hero complex where I feel like I have to succeed for him but I feel like he’s taken away my option to not try. Honestly, it’s really hard to complain about having gained a few kilos when you’ve spent the day with a kid who can’t chew because his facial muscles have deteriorated. It doesn’t matter if I fail or hurt myself or make a mistake. Because failure is a privilege and I’m so lucky that I have a body and a mind that lets me do that.
And at the end of the day if I can take a shit in peace without the help of two strangers, it’s a bloody great day in the life of me.
* Name changed to protect identity.
P.S I recently read this fantastic article by Stella Young called We’re Not Here For Your Inspiration about able-bodied people using people with special needs as their ‘inspiration porn’ as she calls it. I’m not into inspiration porn at all. Dylan is an inspiring person. Not an inspiring person with special needs.