Growing up with a disability is a very hard thing to do.
It often feels, at least in my experience, like you’re living in a world that isn’t made for you. You’re either ostracized for your differences or called things like “special” a lot.
I’ve got to tell you: there’s nothing “special” about sitting down for 27 years. My butt just hurts on a more frequent basis.
The truth is, we’re not all that different from each other — but here are some things you should know about life with a disability.
We’re not scary, I promise.
Film has painted a very unflattering and unrealistic picture of disability and disabled folks. We’re either shown as mad scientists or “freaks” that are only called upon when our superpowers can save the world.
The closest thing I can identify with is a Transformer; I have human qualities, and I’m attached to 300 lbs of metal (too bad I don’t turn into a luxury car). But as cool as Charles Xavier and the X-Men are, I can’t measure up. It feels like being perpetually stuck as the new kid in high school. I still can’t quite fit in.
Whenever I’m out in public and I ask for help, there are people who act like they don’t hear me, or they choose to walk away quickly.
You’d think that I’d just shot lasers from my eyes or something. However, I’m just a gravitationally challenged girl who needs help reaching the top shelf. I really don’t bite.
It’s OK to ask questions.
The very same people who ignore me in public are the ones pulling their children away when they point out my differences or ask questions.
The best thing to do when you don’t know is to ask. I love to answer questions from kids because they’re so curious and innocent all at once. I’ve been asked everything from if I sleep in a bed to whether “wheelchair people” can go to McDonald’s. (In case you’re wondering, the answer is yes to both.)
It’s very entertaining to discover what children consider to be pressing matters in life.
It’s important to keep an open dialogue about differences, because not only does it make children more aware, but it also keeps their minds open. Many adults ask questions too, and that’s OK. However, if a grown person asked if I could go to McDonald’s, I just might give them a funny look.
Just like a parent who gets tired of a child constantly asking why, sometimes we don’t feel like answering things, and we’ll tell you when. But I’m honestly like an open book — the only difference is that my spine has a slight curve.
We have brains.
Sometimes, no matter how many questions I answer, I’m still greeted with baby talk and wide smiles, as if to say “that’s nice, sweetheart.”
It’s true that with each disability comes a certain amount of “damage,” but it’s unjustified to pin it on our intellect. I constantly have to bring up both my college and university degrees to prove my intelligence to complete strangers.
What should be a simple conversation turns into something as difficult as a qualifying round in the Olympics (which I definitely did not train for).
It’s important to know that even if someone cannot communicate in the usual way, they still have intelligence and a story worth knowing; just look at Stephen Hawking!
We’re not here to inspire you.
One of my least favorite things to hear is how inspirational I am.
There’s nothing inspirational about sitting down for the better part of 26 years. Yes, it does come with a lot of hardship and difficulty, but I’m simply doing the best I can with my circumstances.
Imagine this: You’re going to the bar with your friends on a Friday night because you’ve had a hard week. Before you can even settle down to have a drink, someone comes up to you and states how inspirational it is that you came out to have a good time just like everyone else. But it’s my leg function that’s broken, not my social life. I even do stand-up comedy… without the “stand-up” part.
So many people have come up to me and said that they will live their life to the fullest now that they’ve met someone like me. I just can’t understand it because I’ve achieved a great deal while sitting down — and if you want to get technical about it, I’ve half-assed many things because I can’t do them in an able-bodied way.
The only thing of note that I’ve done is skip leg day for 26 years, and I’m doing just fine.
The worst thing you could possibly give me is a standing ovation. For one, I could never return the favor, and standing ovations remind me how short I am. Everyone, disabled or otherwise, is doing the best with what they’re given.
There aren’t really any perks.
Complete strangers have laughed and noted that it must be nice to sit down all the time.
Nope. You get stiff and pretty much prematurely old. Even the parking spots close to storefronts are too few and are often filled by people who shouldn’t be there.
And every time you have to fill out the form for a parking permit, they essentially ask you if you’ve been cured. No, I’m still waiting for that miracle.
The buttons that are supposed to help us are poorly placed, don’t work, or are absent altogether. The only thing harder than pushing a pull door is trying to push yourself while pulling a door open.
I do have an advantage, though. While everyone else is getting old and gray and losing their capabilities, I will already know what that’s like and be ready to give advice. Some form of disability comes for everyone, eventually. So while you’ve got the time, be kind and aware.
Although you’re reading my perspective, there are many others that I can’t even begin to speak to. It’s important to keep an open mind when it comes to people in all walks and wheels of life.