(At a mirror): Are you staring at me?

Humans are curious creatures. We spend a lot of our lives staring at things. I’m staring at symbols on a screen right now. If a wasp comes too near, I stare at it pleadingly and hope that it spares me. Hell, I stare into blank space just to pass the time. People, mainly children, sometimes stare at me to pass their time. I don’t blame them. I mean, you should see me. I’m a delicacy, an enigma which even I can’t figure out. But it used to be different. I used to dream of dislodging their eye sockets and selling them back via personalised joke-shop glasses.
No, I was actually quite a sane kid. The staring wore me down though. At age four I was on the ropes, downing sweetshop vinegar bottles to escape it all. At five I was found in the school playground, lost in the circular chalk maze on the floor, following the unbroken loop in and around and in and around. I’d go shopping and kids would stare. I’d go to the beach and they’d stare. In the park I’d spot kids peeping from behind trees, while braver ones stopped in front of me to gawp. At what? At my wheelchair, I concluded. Wheelchairs should be a hazard, since even when empty they freeze kids to the floor. I was a dumb kid. Optimistic, but dumb.
I was a dumb teenager too. I think I was thirteen when it hit me that the place I live, Wales, is right next to England on the map, not across 300 miles of sea in Ireland. I was one of many clueless teens with an MSN Messenger account where only the deepest of conversations were held, the first of which I remember fondly:
Me: Hi
Them: Hi, lol
Me: Lol
Them: brb
Me: k
Me: u bak yet?
I chatted to school friends who I saw five days a week, so there wasn’t much to say. Then I received my first webcam. It worked at about five frames a minute but it worked. It meant I could have the same brief conversations with school friends, only now it came out of our mouths. Soon friends of friends were adding me, until I was chatting with strangers (of the same age, promise) who fancied seeing my actual face. My views were to be challenged again. On webcam I’d be sitting in my computer chair, so according to my logic people wouldn’t notice my disability.
’Stop moving.’
’Y u move so much??’
’What’s up with ur face?’
The straight answer to these questions? Cerebral palsy and/or spasms, but I phrased it differently at the time:
’I’m disabled and screw you for being so insensitive.’ And then I’d switch off the webcam and block and delete the contact. Insensitive? Looking back, what I was actually asking was ’Why did you have to notice my disability?’
The people who didn’t get blocked were those who worked out straightaway that I had a disability, and so were less direct with their questions. Nonetheless, the webcam brought up the subject of difference again. I was forced to face facts: kids weren’t just staring at my wheelchair, they were staring at me and the effects of my disability. Cerebral palsy wasn’t something I could hide. It was in my movements, it was in the slight slur of my voice, it was in my curled-up hand.
Kids stare at me because very few, if any, of the people they know move as much or in the same way as me. They’re probably seeking a reason for it. Just as they wonder why the sky is blue, they want an explanation as to why ’the man acts like that?’ Or, the more common one, ’what is he doing in a wheelchair?’ Let’s look at possible answers to the former question, since it’s more fun:
Why does the man act like that?
’He’s trapped in an illusionary world in which he is covered in a wave of flies which continuously heal, reform and mutate while he swats at them… But he’s learned to love the flies so it’s okay. Really. Don’t cry.’
Or, ’The man is constantly moving because he’s figured out a way to acquire and maintain the fitness, strength and energy of a Bruce Lee/Hulk super-form. He has so much upper muscle mass that his legs cannot bear it, hence the wheelchair.’ This one should be true. I’m looking at you, science.
Or you can be boring and not terrible and just say my disability causes me to act in a different manner to the questioning kid. I’m not doing it on purpose, nor does it infer anything good or bad about my personality.
The one thing I wouldn’t recommend is telling them to simply ’stop staring at the boy in the chair’ before snarling at them and pulling them away by the wrist. I’ve witnessed this reaction too often. 1) If you are going to say this, at least call me a man. Gentleman and a scholar would also suffice. There’s no excuse now that I wear hair on my face. 2) When parents react with anger, it suggests to me that it is the parents themselves who are embarrassed and uncomfortable with my awe-inspiring presence. Sure, sometimes it does suck to be stared at and a few years ago I would’ve challenged your kid to a duel, but by getting angry all you’re teaching them, I’d theorise, is to view me (and others with visible disabilities) as someone to avoid and maybe even fear: ‘If you stare or show curiosity, wheelchair guy will punch your teddy bear, take all her children into hostage, and bite the heads off passing strangers.’
It’s better, I think, to let them stare, let them ask questions and then answer those questions. As for adult starers, well what can you do? Search YouTube for ’people sitting around in wheelchairs’, maybe? No, I’m not going to deter adults from looking at me. Some adults are hesitant to even glance at me. Maybe their parents tugged them by their wrists when they were kids. Or maybe they dislike having their heads bitten off.


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