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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.

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6 Comments

  1. Wow, I never knew this! Thanks so much for sharing your story. It’s so heartwarming and awesome that you have such a great outlook and haven’t let your disability slow you down. I can’t believe that about your substitute teacher. That’s pretty horrible of him. I love how you threw the ball at him. That’s fantastic. But seriously, I love how optimistic you are. It’s very inspirational.

  2. This was very interesting to read. Society has come a long way from back in the day when they really thought that just because someone had physical deformities, that person was incapable of learning anything and they were excluded from just about everything. Still, it’s saddening to hear that some people are still so ignorant about the disabled.

    It’s true, being bullied and having it hard when you’re young really does tend to have an effect on you as an adult… And they’re not always as negative as other people assume. When I was growing up in the Philippines, the mere fact that I had curly hair made some kids treat me as if I were different. Most days, I played in the playground with them but on days when some of them felt the particular need to be mean just because I had curly hair, I retreated to the library and read books all throughout recess. I think this is the reason why even though English wasn’t my first language, I think I speak it and write in it fairly well. My grasp of the language helped a lot when I moved to the US when I was in my preteens.

    Anyway, I’m glad that you have the kind of attitude that you’ve taken towards your disability. Some people undeniably let it cripple them (even though they were born with it… they crave for “normality” and fail to realize other things that they’re “normal” in) but it sounds to me that even though there are things you can’t do because of your disability, you’ve made the most of the things that you CAN do. You have always come off to me as a very smart and understanding person. It sounds to me like you’ve pursued knowledge instead of athletic things growing up and you know what? I think you’re doing a very good job at it. 🙂

  3. LOL, I thought I was the only one out there with KFS that was being treated like I was mentally disabled. I was given a whole P.E. instructor to myself since my school district didn’t want me to get hurt by the “normal” children. I loved it, learned to play golf for free at the country club. I’m going to start singing out loud for fun though.

  4. Jayeless,
    well I enjoyed this. You make me wonder what sort of support system is necessary to make it through the difficult school/teenage years in one piece. These are the years in which as I’m sure you know kids can be very cruel (perhaps not realizing or intentionally being cruel) Was there one thing in your mind that stands out as “most important” for making it through? what was that? Thanks!! wb

    • Thanks, WB. Honestly, I can’t recall facing much difficulty at school. As a five-year-old, I vaguely recall facing some teasing, and as a grade six there was some minuscule kid who was so bad at taunting that he was hilarious, but nothing really significant, and certainly nothing as a teenager. Of the little trouble I can remember, it’s usually been adults who’ve irritated me, not my peers.

      As for the “most important” part of making it through, all I can think of is that I know anyone who patronises me is an unimportant person I don’t need to waste my time with anyway. The vast majority of people aren’t like that, so I don’t need to deal with the minority who are.

  5. My daughter also has klippel Feil Syndrome. I very much enjoyed reading your post. Gives me a little insight as to what she might be experiencing.


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