I imagine, at one point or another in your life, you’ve wondered what it’s like to be in a wheelchair. Maybe you have a relative or close friend who uses one and you’ve tried to imagine what his or her life is like. Maybe you saw a total stranger on the sidewalk using a wheelchair and the gears in your brain starting cranking. Maybe you hadn’t thought about it at all until you read the first sentence of this paragraph and now it’s all you can think about. (You’re welcome!) The point is that it’s a natural thing to wonder about. And it’s also something that I — a noted person in a wheelchair, as a result of a spinal-cord injury to my C4 vertebrae — am uniquely qualified to explain. Or, at least, to try to explain. There’s really no way to get to it all at once. It’s really quite a lot. But we might as well start somewhere, so let’s start here…
Being in a wheelchair is like being famous. I mean, kind of. There are some differences, obviously. For example: Did you guys see that piece in GQ a little while back about the appearance fees famous people collect to show up at night clubs? Lord Almighty. It said Scott Disick — a tiny, barren moon orbiting Planet Kardashian — used to rake in $80,000 a night to sit on a plush couch and sip Grey Goose while an emaciated tattoo aficionado provided the soundtrack by bonking a few keys on his Macbook. What an incredible country. So I suppose being in a wheelchair is not exactly like being famous, because no one has approached me with a deal like this yet.
But there are some similarities. Two, that I can think of off the top of my head. So at the very least, being in a wheelchair is a little like being famous.
The first way being in a wheelchair is a little like being famous is that people really don’t want to say “no” to you. Famous people get this treatment for business reasons (keep the famous people happy so they keep coming and normal people will want to come to be near them) and/or personal reasons (“Guyssss Jennifer Lawrence called me ‘sweetie’ when I told her the coffee was on the house. Do you think I should ask her out?!”), whereas I get it, generally, because people do not want the person in the wheelchair to be sad.
This is a problem for a couple reasons: One, because I spent 23 years before my spinal cord injury as an able-bodied doofus who was filled to the brim with bad ideas. People told me no constantly, and justifiably, to the point that I came to rely on it as my check against doing something stupid. Without it, I’ve had to start relying on my own judgment and moral compass to help sort the good ideas from the bad. This is not a sustainable option. If I know anything about myself, it’s that I can’t be trusted.
But the more important reason it’s a problem is because that reaction, the wanting to work hard to say yes to me, often comes from a place of pity, which I hate. In fact, I hate it so much that one of my favorite interactions since my injury was with a rude woman in a coffee shop who, after I warned her that she might want to move her purse so I didn’t run over it on my way out, loudly announced, “You better not. It’s Coach!” After a string of 500 or so consecutive people saying things like, “Oh my, I’m sorry. Let me move it,” like they owed me an apology for their perfectly rational behavior, it was nice to be treated like an asshole by a total maniac. She didn’t see me as a disabled person to be pitied. She just saw me as some idiot who might ruin her Coach bag. (Which, to be fair, I was.) It might have been the most normal anyone has ever treated me since my injury, and as weird as it all sounds, it kind of made my day. So thanks, you materialistic loon, wherever you are.
That’s not to say there aren’t perks in all this, though, or that I’m not enough of a hypocrite to exploit them every now and then. When I went to see The Book of Mormon in Philadelphia a while back, the woman taking the tickets made the man in front of me dump out an entire cup of Starbucks coffee because the theater had a policy about not allowing outside food or drink. When I rolled up next, I gestured to my half-empty bottle of Dr. Pepper and said, “I need this for my medicine.”
Her response: A very sweet “Of course, baby” as she waved me through.
Now, here’s the thing: I did not need it for my medicine. I had already taken my medicine. And even if I hadn’t, I also had a bottle of water that I was sneaking in inside a bag strapped to my chair. I would have taken the medicine with that. To be honest, I’m not even sure you can take medicine with Dr. Pepper. I’ve been skittish about combining soda with things ever since I saw those Mentos videos on YouTube. The truth of it all was that I just really, really wanted that Dr. Pepper, and I took advantage of her kind, sweet heart to make sure I got to keep it.
Maybe I should feel worse about that. I don’t know. The theory I’ve been operating under is that there’s a lot of bad stuff that comes with being disabled, so if my disability can also help me enjoy the last sips of a refreshing soft drink while the rest of the parched audience waits for intermission, then fine. That feels right to me. But then again, maybe it’s one of those unchecked bad ideas I was talking about earlier, and now I’m on a slippery slope that ends with me becoming a manipulative sociopath who supports himself by using his disability to grift the elderly out of their retirement funds. That’s also a possibility, and I won’t know until it’s too late, because you were all too polite to step in early enough to stop me. This is why you need to say no to famous people and people in wheelchairs sometimes. To protect your Nana.
The other way being in a wheelchair is a little like being famous is that people tend to stare at you in restaurants. Oh, did you think we didn’t notice? We definitely noticed. Denzel Washington and I both saw you peeking at us and quickly looking back at your salad when we turned our heads toward you. Come on. You’re better than that. You should have snuck a glimpse by angling your water glass toward us and looking at the reflection. You get sloppy like this while you’re doing surveillance in Budapest and you’ll end up getting dragged out of the restaurant by one of notorious crime lord Victor St. Aspen’s henchmen, who will have shot you with a tranquilizer dart and explained to the maitre d’ that he’s stuffing your limp body into the backseat of a town car because you “had too much wine.” Next thing you know you’ll be hanging from your feet in one of St. Aspen’s warehouses while a shark-eyed interrogation expert named “Dr. Sword” is in front of you sharpening his instruments. I’ve seen it a million times.
So try not to stare, if it can be avoided.
I do get the impulse, though, and I know it’s not malicious. It’s a curiosity thing. Sometimes the eyes pick up something slightly outside the ordinary and the lizard brain jumps to “WHAT’S THAT? WHAT’S GOING ON? KEEP LOOKING, EYES” before the rational part can initiate the emergency override. But man, let me tell you this: I don’t care who you are, you are going to become really self-conscious about the way you eat soup once you realize two or three people keep sneaking glances in your direction. Like, you get all, “Are they looking at me because I’m in a wheelchair or because I’m eating my soup wrong? Oh God. Oh no. It’s because I’m eating the soup wrong. Have… have I been eating soup wrong my whole life? This explains so much,” which makes enjoying your bowl of crab bisque quite difficult. So again, just do your best. That’s all Denzel and I are asking.
But here’s where it gets tricky. Let’s say it’s not you who is staring. Let’s say you’re handling it all very well and being cool about it. (Good job!) But let’s say you’ve taken your precocious 5-year-old son — named, oh, I don’t know… Brocksly — to dinner with you, and in addition to staring, he is also pointing his tiny ketchup covered fingers at me and saying “Mommy! Daddy! Look at the man’s chair!”
What’s your move now, hot shot? Sprint out of the restaurant without your child, start driving southbound as fast as you can, and just make camp and start a new child-free life wherever you run out of gas? That’s certainly one option.
You could also quietly lean in and say, “He needs the chair to get around because his legs aren’t as strong as yours and mine,” or something like that. Anything that answers their question and normalizes the situation a bit. I think the key is to have a plan for the question going in, just so you don’t end up panicking and saying, “Stop looking at that man!” or “Leave that man alone!” The message of those, whether you’re trying to convey it or not, is one of exclusion, and one that highlights the idea that they shouldn’t interact with people who look different. That’s always a shame, because from my experience, kids can be cooler with it all than most adults if you give them a chance.
Case in point: My friend’s 5-year-old. His dad and I have been friends for over 15 years now, so he only knows me as a person in a wheelchair. He’s also adorable, and very smart, and one day he just walked up to me, said “Claude Monet painted landscapes,” and then marched off like it was the most obvious piece of information in the world. Very few things will make you feel like more of an uncultured swine than the realization that a 5-year-old knows more about art history than you do.
Anyway, the last few visits I could see the wheels turning in his brain as he looked at my electric wheelchair, so it wasn’t a huge surprise when he finally asked about it a few weeks ago.
“Uncle Brian,” he said, because he calls me “uncle” and I melt into a blob on the floor every time he does. “Why do you have that chair?”
I explained it to him as simply and honestly as I could. Something like this: “Well, a long time ago, I hurt my neck very, very bad, and now the messages from my brain that tell my arms and legs to move can’t get there because they get stuck in the broken part. I need the wheelchair to help me get around, because I can’t walk or run or jump like you.”
“Oh,” he said, before pausing for a second or two. The wheels were obviously turning again, though, because after that 2-second pause he looked back up at me with a quizzical eye and said, “How fast does your wheelchair go?” Then we raced in the hallway of my apartment building, and after he beat me handily he ran up to my buddy and announced, “Daddy, I beat Uncle Brian’s butt!”
I love that guy.
So, what did we learn here today? Well, hopefully you got a little insight into what it’s like to be disabled. And what it’s like to be famous too, I guess. That was my goal when I set out to write this. But I also got sidetracked a few times and veered off into tangents about celebrity appearance fees and restaurant surveillance techniques and the bodies of work of famous French impressionists, so maybe you learned those things, too. In any event, here to help.
On the other hand, and I admit this last one is a long shot, maybe you’re the woman from that Book of Mormon show in Philadelphia a few years ago, and you just learned that I lied to you about that Dr. Pepper I was bringing in “for my medicine.” Oh man. If that’s the case, um… sorry? I promise I didn’t spill any on the floor, if that makes it any better.
