Living Life At Crotch Level: What It's Really Like To Be In A Wheelchair

I don’t want you to feel sorry for me as the poor, young, disabled girl. I don’t want you to look at me as this inspiring hero. I am neither of these things.
Publish date:
August 7, 2013
disability, how not to be a dick, wheelchair

Everyone stares. No, that’s not an exaggeration, I mean EVERYONE.

If they aren’t staring, they’re purposefully trying to look away, or they have their gaze set on the few feet above my head where I’m sitting, and that’s even worse. Like hello, I’m kind of hard to miss.

I can forgive you for staring. It’s a human’s natural response to look at something that’s different to try and decide if it’s going to attack you, and seeing a healthy-looking, young girl in a metal tank with light-up wheels might pose as some sort of threat. But I’m not going to hurt you. In fact, I’M the one on defense ALL THE TIME, because YOU are going to hurt ME.

What makes it so bad aren’t the stares or lack thereof, it’s the words that come stupidly spewing out of your mouth. You’re going to comment on my appearance right away, because it’s probably a shock to you that I’m not deformed and I’m in a wheelchair. You’re going to tell me how pretty and “normal” I look, and I’m going to want to punch you in the face for it. You can argue and say, “But you really are pretty.” Well that’s great, but until my ass got stuck in a chair, no one went out of their way to comment on how I looked on a daily basis.

That’s the thing –- you go OUT of your way for me. You’re going to jump in front of an already opening door to hold it for me and you’re going to expect a positive response. For a moment, you feel like a hero helping out the poor, disabled little girl, and I’m sooOooO glad I was able to assist YOU in your good deed of the day.

But, guess what, now YOU are in MY way and you’re standing in the doorframe that my wide-load already has a hard time getting through. Here’s something you might not have thought about -- maybe I can do it myself.

I’m not trying to be misleading, there are plenty of things I can’t do that you can, like walk around, for example, but I can open a door. If you want to be a decent person and hold a door for the person coming in after you, that's fine, but if you want to give me a little extra push up the hill, I’m going to consider that harassment. Would you be touching me if I weren’t in this chair? If the answer is still “yes,” then you might need to reevaluate your decision-making process.

If there’s something I can’t do, I will ask for help. This does not happen often, but sometimes I have to. If I happen to ask you, a stranger, for this help, please feel free to say “no,” just like you did to that homeless person. Granted, you might not think I’m going to ask for money, but being a poor college student with a shit load of medical bills might just drive me to that point some day. And guess what? You won’t know this, because I’m STILL a STRANGER. So, if you say “no,” my world will keep on spinning. I’m not going to take it personally, and I’ll find someone or something else to reach what I can’t grab off the top shelf.

This brings us to another point. I might be at the grocery, just inches away from reaching what I can’t while sitting, and I will STAND UP to grab it. Yup, you read that right. I can STAND! Sometimes I can even WALK! But for the most part, if I’m not in bed, I’m in my wheelchair, not by choice. And even if it was my choice, it’s none of YOUR business, and does not require any comments or questions on your behalf.

I’m a little more understanding here, I get it, people EXPECT you to be paralyzed if you’re in a wheelchair. Thankfully, I’m not! But the slew of all my other health issues keeps me dependent on one. What I don’t understand is when people are offended when they find this out. One word that’s been used, to my face, to describe their shock is “betrayed.” Lady or sir, I don’t know you, and frankly, I don’t care what you do with your legs, but if I saw you stand out of a wheelchair I would be excited for you, not condemn you!

Maybe you’re different, and you’re not going to be appalled if you see me out of my chair. But you are still curious. And you’re probably wondering out-loud, “What is wrong with you?”

To this I answer (in my head), “What is wrong with you?”

If ever you find yourself in front of a person searching anxiously for the right thing to say or ask, STOP. Don’t say anything at all. Take a deep breath, and remember, “Hey, this person is a human being with their own life and privacy” and in my case, I just have a different means of transportation.

Thankfully, it’s your lucky day, and I’m all about the awareness of my condition, so go ahead and ask ME. I speak only for myself about this. I’m about as similar to other people in wheelchairs as I am similar to other people with blonde hair.

So, personally, I’d rather you ask me what’s wrong, than just stare and judge and make your own assumptions. But be prepared for a lengthy medical diagnosis which you’re not going to understand or my attempt at a sarcastic, joke of an answer at which you won’t laugh at until I do, confirming that “YES, that was a joke, and I WISH I were just faking it.”

But no, I really don’t want to hear the bible verse that’s going to cure me, or how your grandma’s in a wheelchair, or how you stubbed your toe once, so you obviously know what I’m going through. But because I’m polite, I’ll listen and smile, and you’ll leave feeling better about yourself.

And here we are, after our little interaction, and one or more of these things have most likely happened. Like I predicted, you’ve done more damage to me then I have to you. But here’s another little secret, you didn’t just meet the real me. I prepare myself for ignorant interactions like these so that I don’t spend every day hurting.

I don’t want you to feel sorry for me as the poor, young, disabled girl. I don’t want you to look at me as this inspiring hero. I am neither of these things. I have simply learned to adapt and survive -- something we are ALL born with.

Bottom line, I’m not apologizing for making you feel uncomfortable when I roll up. I’m not apologizing for the few extra minutes it takes for the bus driver to get me on with the lift. I’m not apologizing when I’ll (hopefully) someday be out of this chair. I’m not apologizing for your ignorance, and I’m done apologizing for my disability.

My LIFE should not be an inconvenience to YOU.

And if it is, then I am sorry, because you’re missing out on a hell of a ride.