Earlier today I was struggling really hard to put a watch on my wrist and it occurred to me that if I was someone else, someone with two perfectly functional hands, I’d probably be able to get this watch on my wrist in thirty seconds flat and it would never occur to me that there were others out there who find it next to impossible to complete this seemingly simple task.
I have a condition called Klippel-Feil Syndrome. I don’t mention it very often because for some reason, I rarely remember that I have it. I’ve had it all my life and the thought of not having it is unimaginable to me. It’s like, someone born in a country without ready access to modern technology isn’t going to spend all their time thinking about how they don’t have a computer. That’s just their life. Well, it’s the same with me.
But occasionally, something happens — even something as minor as wanting to put a watch on my wrist — and, frustrated, I’m forced to recognise I have a disability. It took me ten minutes to get this damn watch on, and even now it is on, it’s on pretty loosely and keeps sliding around. So annoying.
Having KFS isn’t terrible, though. It can be really terrible — it can cause blindness, deafness, neurological issues, multiple organ failure, and so on and so forth — but I didn’t get it that badly. Many of the bones and joints in my right arm are malformed. My shoulder and my wrist are both malformed. I have four fingers on that hand. Elsewhere, my right lung is really small, my spine is “twisted” (whatever that means, because I don’t know) and my head is tilted thanks to the “twisted” spine. That’s it. It’s all superficial, physical stuff except that I have reduced lung capacity. Nothing to threaten my quality of life, anyway.
There are several things I can’t do, but seeing as I don’t even try to do them, they rarely remind me of my disability. For instance, I can’t drive. Do I care? Eh, not really. Walking and public transport work just fine. If I want to drive (which I begrudgingly guess I do…) I will have to get a car specially modified for me to be able to drive it one-handed. This is pretty much the entire reason why I haven’t bothered applying for my learner’s permit yet. I’m not buying a car before I even work out whether I can be bothered learning to drive, and yet there doesn’t seem to be an alternative.
What used to irritate me a lot when I was younger, but which isn’t much of a problem any more, is people assuming that I’m intellectually disabled. Most infuriating thing ever. It makes we want to punch people in the face. At the very least, I want to scream at them and demand to know just how many years spent living in a cave was required to create that level of ignorance. Assuming my mind is defective just because my arm is? How does that work?
But I know they’re not malicious and that these infuriating people actually think they’re being tolerant and understanding, so instead of punching them in the face, I politely steer the conversation to matters through which I can demonstrate my immense intelligence. I use lots of long words and ask something intellectual — usually something about foreign politics — and they’re usually too intellectually challenged themselves to understand what I’m talking about, and then they get flustered and ask stupid questions like, “Do you go to school????” I mean geez, of course not, you stupid people. These are the Dark Ages and my parents are still trying to track down the fairies who abducted their healthy child and replaced her with the demonspawn that is me. And demonspawn don’t attend school.
Once I even had this infuriating substitute teacher for PE who thought he was being really considerate by asking me, “Do you know how to throw a ball??”
I stared at him, dumbfounded, for a couple of seconds. “Yes,” I told him.
“Are you sure?” I nodded slowly, and he went on, “Hmm, well, just in case, let’s brush up on this, okay?”
So then he demonstrated to me how to throw a basketball. I couldn’t believe he was doing this. When he handed the ball over to me, and patronisingly said, “Now you have a go,” I waited for him to step back and then “accidentally” threw the ball into his leg. He confiscated the ball off me and decided I was incapable of participating in the class. Good times.
As I recall, I’m pretty sure that was around the same time I decided there was absolutely no point in me trying to participate in PE, and I refused to do so any more.
Being disabled has its advantages. Firstly, I was allowed to quietly drop PE. I explained that there was no point in me taking a class in which I could barely participate, and my PE teacher and coordinator and everyone agreed and for a year, I did not take PE. Then I got re-added to the class, and my new PE teacher insisted that I choose a sport to practise. It could be any sport I liked, but I had to choose something. At first I was annoyed, but then he suggested that I might like walking.
Secondly, I really don’t know how different a person I could be if not for this disability. For instance, when I was little I wouldn’t learn to walk, so I learned how to read and speak instead. Perhaps it’s possible that if I’d been learning to walk, I wouldn’t have been as interested in knowledge as I was, and wouldn’t have accumulated so many random facts in my head. I also tend to think my personality would have been completely different. When I was little I endured some bullying about my disability, but I was quick-witted and developed strategies to outsmart such bullies. This meant it was no fun to bully me — I actually remember one particularly stupid bully (four years younger than I was) throwing a tantrum about how I wasn’t getting upset and how it wasn’t fair — and no one bothered. But maybe, if I hadn’t had to hone my snark abilities during primary school, I’d be less predisposed to snarkiness now. Wouldn’t that be horrible?
Being disabled sometimes excuses me from the requirement of following certain social norms as well. If I can bear the thought of others thinking I’m intellectually disabled, I can sing along to my iPod and flash goofy smiles at strangers and everyone leaves me to skip along my merry way, figuring I don’t know any better than to act in such an abnormal way. Of course, I do. I just don’t care sometimes. I don’t try to use this as an excuse to ignore really important social norms, though, and I wouldn’t advocate doing so. We have to have some consideration for others’ delicate sensibilities.
To be honest, I don’t consider my disability to be a bad thing. It’s just part of who I am, and such an intrinsic part of who I am that I rarely bother mentioning it. That doesn’t mean I’ll take offence if others ask me about it, either. I would much rather people asked about my disability than ignorantly assume I’m intellectually disabled. It’s not like it’s a choice between two evils, either: I seriously don’t mind people asking. If you want to know, I’ll happily tell you. It’s not a horrific, shameful thing, it’s just… well, Klippel-Feil Syndrome.
