Ria Bridges is an ex-pat Brit currently living on the east coast of Canada, along with 5 cats and a glorified budgie named Albert. When not reading and reviewing books on bibliotropic.net, Ria can often be found obsessively playing video games, being an amateur photographer, or experimenting with various fibre arts. Ria dreams of someday writing something of publishable quality, and then finding the courage to actually follow through and try to get it published.
by Ria Bridges
The sound is loud enough to travel beyond the closed door of the training room, to reach the ears of the employees siting in the lounge, startling one. “What was that?”
“Some girl in the new-hire class,” is the reply.
A third person pipes up. “Meep Girl. Yeah, she’s got some medical thing that makes her do that, I guess.”
The first person laughs. “Seriously? There’s no such thing, right?” She pauses, considering. “Is there? That’s just so weird!”
I’m sitting nearby, quiet, half afraid to speak up because I don’t want the focus of the conversation to shift to me, cowardly in the way that I won’t say, “It’s called Tourette’s syndrome, guys, and I’ve got it too.”
Tourette’s is one of those conditions that gets largely gets ignored except for extreme cases, and then the media seems to like making a big to-do over the whole thing. Most of my exposure to my own condition came initially thanks to TV. I remember an episode of Oprah that involved kids with Tourette’s, sitting in chairs and making animal sounds, twitching hard enough to be called flailing, and most of the conversation was about how hard it was for the parents and very little actually got addressed to the kids about what it was like for them. Most media that gives us a voice usually gives us a voice liberally peppered with obscene phrases and swear words.
I’ve always thought it was telling when the only people who have talked to me about my condition are the ones who recognize it because they themselves have it too. What does this say, exactly? A bond of twitchy friendship, forged by a mutual disorder whereby our brains latch onto something – a movement, a sound, a word – and just keep running with it? Or does it say more about the people who see the signs but have no idea what it could mean because all they’ve ever seen of Tourette’s is the media-hyped extremities, coprolalia and flailing and acting like a misbehaving toddler.
I’ve been told my some people that I don’t have this condition because I don’t act like that. I’ve been told that I can’t possibly have a mild case of Tourette’s because “You’re either hitting yourself and in constant sourceless pain, or you’re not. There’s no mild version of that.”
It’s rare to see a character in anything where their condition isn’t played for laughs, usually by presenting a severe form. Violent motor tics and rampant coprolalia (interestingly enough, literally means shit-talking), which actually only affects about 10% of us, though you’d never know that from media representation. It’s like people are saying, “Go big or go home; if it’s not obvious and intrusive, it’s just not worth talking about.” Maybe we get a Very Special Episode of something to show how normal and misunderstood we are, usually with the help of big-hearted soul who is so kind to befriend the lonely little twitchy weirdo in the corner.
Me, bitter? No, not at all!
Me, I have verbal tics. Usually it can sound like I’m imitating an animal, often a dog, which has led to the wonderfully self-deprecating joke that I’m barking mad. I will also say words at random times, such as when I was waiting for a bus and suddenly blurted “Pud-pud!” (in context, I was previously discussing how that ought to be a nickname for one of my cats), or last night while browsing Facebook, I found myself shouting, “Fruit!” No context to that one, I’m afraid. I also have motor tics, most often with my head twitching to one side, or my hands flapping and twisting, sometimes to the point where I actually can’t do anything anymore until they twitch themselves out and I can get back to doing such complicated things as holding a pencil, or typing without it looking like I just smashed my head off the keyboard repeatedly.
I can joke about it. But it’s also embarrassing. It’s awkward to be sitting on a crowded bus and to suddenly bark. It’s one of many reasons why I prefer written communication to spoken – Tourette’s doesn’t demonstrate in writing, and even though as I’m typing my head is still twitching, none of that comes across unless I say so.
Which brings me to the point I want I want to make. “Nothing comes across unless I say so.” Special Needs in Strange Worlds is an awesome column for, among other things, shedding light on he darker areas of disability, the parts that are still shadowed because they’re not always obvious, and we don’t always wear our struggles on our sleeves. But that doesn’t mean we don’t struggle. And part of the struggle is a lack of understanding drawn from a lack of decent representation. When Sarah asked me to write something for this, it took me ages to figure out what I wanted to write about. Do I talk about my experience with my ex-tumour? Do I talk about my neurologically-based hearing problems? How about severe social anxiety, or phobias people don’t take seriously, or chronic pain?
But what I eventually landed on was this. A condition that, when it’s explored in media, it’s nearly always explored for humour value. Neurological comedians. The voice we’re often given isn’t our voice, but the voice of somebody who wants to speak for us, and that person thinks we’re rudely hilarious or hilariously rude. But we all need a chance to speak for ourselves, to hear our own voices talk about the things that are important to us. The first step on the path to acceptance is education, and the first step to education is getting the information out there for people to find.
Most people didn’t even know “Meep Girl’s” real name. They just called her Meep Girl. It was easier to shrink her down to one characteristic than it was to find out anything about the person she is. Somehow in their minds, this was less offensive than calling someone Gimp Girl, or Fatty. I can’t help but wonder, if I’d been less adept at hiding my outbursts, would I be Twitchy, or Barker, or some other nickname that recognizes me solely by an involuntary brainfart that I can’t correct.