It’s a miracle

The other day I was having an email exchange with a student who used to be in one of my uni classes. We were talking about how we’re both so close to the finish line, when she commented that ’It’s nothing short of miraculous that you’ve made it this far.’
I know this is meant as a compliment. Her intentions are good, and I’ve already touched upon how the fear of saying the wrong thing around disability needs to die. Still, is my making it through university really that mind-blowing? She then went on to say that ’I’d have found the challenges you’ve faced insurmountable.’
This is one reason I’d rather keep my identity a secret: I wouldn’t want this person feeling like she offended me here. She didn’t. I actually receive these strange compliments quite frequently, often from strangers. What she’s basically saying is that not only have I achieved a Masters, I’ve done it while living with a disability, which is doubly impressive. At least that’s how I’d phrase it. I wouldn’t go near the word ’miraculous’, however. Imagine Jesus running out of magic miracle tricks in the Bible.
’You’ve just turned the living-room into an entirely new planet. What’s next Jesus?’
’I shall obtain a Masters degree over the course of 3 years.’
’…and I shall do it  with one hand tied behind my back!’
Look, it’s true that it takes me a bit more physical effort to complete a piece of work than someone who types 700wpm. But here’s the thing: it’s normal for me to type slowly. I’ve never experienced it any other way and I’m happy and comfortable with my unique technique. On top of that, my mind functions normally so I’m not defying any laws by using my intelligence. In a way, it’s selfish what I’m doing. I’m not in university to prove a point or inspire anyone. I’m just looking to progress. My journey up to this time is rooted in luck. Apparently I was almost placed in a special education class in infant school, which would’ve hindered my learning. I’ve had good opportunities and, yes, I’ve had to work to gain more. Most people at university have.
I don’t detest this kind of compliment, it just weighs so much on the assumption that I’m usually chained down by my disability, that I’m breaking the norm of disabled people locking themselves away from the world to contemplate the misery of life. Rather than being about me, it’s about how people imagine I should be. Thus instead of leaving me feeling proud of my accomplishments, it leaves me wondering exactly how bad people think my life has been/is. What does she mean when she calls my challenges ’insurmountable’? What does she imagine these challenges are? One time I experienced this traumatic event where I would blink funny if I thought too much about blinking – faced with such a devastating obstacle, would my student friend immediately throw herself off a cliff? This is the part that annoys me if said by a clueless stranger. ’I couldn’t do what you do’ they say, implying that if their weak brain was in my magnificent body AT BEST they wouldn’t bother exiting their house – to which I ask ’How do you know this?’ Although what I’d really like to say is ’I couldn’t live with your useless head weighing me down.’



I’m pretty damn cute. Tweety Bird cute, that is. I can’t help it. My cuteness can cause kittens to melt into a patch of fluff. It’s part of disabled life to be cooed at every so often. Being deemed cuter and sweeter than the average kid had its quirks when I was 5. Teachers only told me off if I’d murdered someone. I could murder my brother and he’d still get the blame.
Being (apparently) cute when you’re 24, though? It’s a pain in the ass. I’ve had strangers my own age pat my head. I’ve had strangers my own age tell me I remind them of their 4-year-old bloody daughter. Feel your libido shrink to a shrivel as, on a night out, various drunk people ask you where your parents are tonight, whether they know you’re out, and how you’re probably such a good lovely inspirational sweetheart of a son. Let me call my boyfriend over so we can patronise you together, as a couple.
’Look at you chatting up my girlfriend,’ laughs her boyfriend who looks younger than me, ’I’m so jealous.’
Maybe some people need children so badly they’d mother a brick back to full health. Hell, sometimes I stop what I’m doing in a public place and think, ’Shit, what I just did was probably cute by some onlooker’s standard.’ As I write this I’m on holiday. I went swimming earlier today, and I need armbands to help me float. Add that to the fact that I backstroke like a wonky penguin and you know that one or two pensioners looking on needed therapy to accept I wasn’t their grandson. Not that I care. Armbands are easy to pull off if you imagine they’re there to conceal a pair of Rambo knives, or that you’re The Rock wearing elbow pads or something.
People should pay attention to those blockbuster films. Disabled people are evil, not cute. All those evil disfigured villains, watch how they live their lives. Maybe then, instead of seeing puppies in my sweet anime eyes, strangers will see people tied to chairs with dynamite sticks stuck up their asses, screaming helplessly as I light a match. Not so cute now, am I?

(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.

Appreciating the small things

So I just watched this program about a woman trying to deal with terminal cancer. Yes we’re talking mortality again, sorry. No, actually we’re talking life. One of the people this woman talked to – a man living in constant uncertainty about his future – emphasised the notion of being in the moment, going out of your way to notice the small, often overlooked delights. So here are some things off the top of my head that tickle my cells, when I take the time to observe.

Bubbles. Look at a soap bubble and you’re looking into a mini mirror of reality, so small, so fragile yet capturing a trippy reflection of the immediate setting. Bubble baths are particularly cool because you get to stare at thousands of the things, and then pop some in celebration of the temporality of everything. I think the bubble bath bottles should give up on pretending there’s health benefits involved. Just say ’This product is stupid fun and utterly pointless. Enjoy.’
Shoes clipping upon hard floor. In a busy town centre, feeling a bit stressed? If you were me I’d tell you/me/we to listen to the beats of feet on the street. Seriously, whether someone’s walking fast or slow, they usually produce a consistent rhythms of clops. By the way, say ’clip-clop’ out loud. How nice does that alone sound? It’s an incredible verbal take on what I’m referring to here. One foot clips, the other (to my ear) clops. Even if a person looks miserable trotting around in the rain, their trotting betrays them with its lively rhythm. Oh, and don’t underestimate the beauty of a well-timed scuff either. A busy town could now resemble a pleasant ’clip-clopping’ orchestra.
The car window raindrop race. It’s been too long since I did this one. I’ve always been good at withstanding long car journeys and I owe a bit of this to the viewing spectacle I discovered as a kid. The big blob aligns next to the thin drop, who will reach the bottom of the car window first? The two roll down at equal speeds, picking through stationary raindrops as they go. But what’s this? The thin drop is now racing down its trail, eating up all its stationary predecessors, fat and fast. Meanwhile, big blob took a wrong turn and ended up on a dead-end trail: with no stationary drops nearby to pull it downwards, poor blob is having to crawl its way along. Basically think Pac-man (if eating dots made Pac-man fat) with the gameshow Tipping Point (if the discs could go through some of the pins).
I’ll leave it there for now. I’ve proved myself insane enough (or is that inane? Autocorrect asks smugly). I’m off to watch raindrops dribble down the window for an hour.