It’s very easy to look at a person sitting in a wheelchair and just say, “Oh they’re wheelchair-bound.” They’re just pointing out the obvious, right?
Nope. I’ve discovered since I got my first wheelchair, “wheelchair-bound” isn’t really true. For one thing, a great many people I know with wheelchairs can walk, just like me. It’s true that I can’t walk far, but indoors on nice flat smooth surfaces I can get to the bathroom or kitchen. Some days I can even do it without the use of a cane. I still relish these little moments of mobility. It’s been a long, hard road from accepting my first walking stick, to graduating to crutches and now to the final step; into a wheelchair.
The wheelchair isn’t something I’m trapped in. It’s something I use to give me back some of the mobility I have lost. I was terrified the day it got delivered to my house. I cried over it for days… then I actually used it outside.
It was exhilarating. Before, even on crutches, by the time I got to the end of the street I was exhausted; my arms and back were hurting from the crutches, my legs were just plain hurting and what tiny bit of energy I had to go out was gone. This happened every time, even when I was only a few minutes away from the GP! This time, I got to the end of the street… and I still felt like I could stay out! I didn’t feel like crawling back to bed.
My partners push the chair for me outside of the house. I discovered when you leave the house in a wheelchair… the world is not flat! Not a single pavement is actually flat; it’s all a sloping, bendy, bumpy mess. The ramps to get you from road to pavement are nowhere near as smooth as they look from a walking person’s point of view. When you become a roller, those smooth ramps look like huge walls! The nerve issues with my arms mean I just don’t have the strength to push myself that much. I tried a few times, and hurt my arms desperately trying to stop myself careening into the road because the pavement was slanted!
I can usually take over for a little bit when we enter buildings with nice flat surfaces. It’s not much, but having that little bit of independence is amazing (plus, I really like spinning in circles and reverse parking…) I’d been looking at the wheelchair all wrong. To me it was a sign that my mobility had gotten so limited, I couldn’t even use crutches anymore. In reality, it was a device that would improve my mobility and give me back some of the independence I’d lost as my conditions advanced.
Unfortunately, people’s perceptions of wheelchairs tend to put a dampener on my newfound joy. Because they think of the phrase “wheelchair-bound,” if someone sees me move my legs, I get dirty looks.
A few years ago, I fell down a flight of stairs. This resulted in a tiny fracture in my sacrum. For years it didn’t cause many problems, and sorting one back pain from the others is just overly complicated. However, starting about a year ago I began getting extreme pain at the base of my spine that lances horribly down my legs. I can fend this off, but only by standing and stretching. Even with that, if I leave it for too long, I have to be carried to the sofa to lie down. Then over the course of the next few hours I can slowly (extremely slowly) start moving my legs again. It’s incredibly painful, and the longer I sit the worse it gets.
So if I’m getting dirty looks for moving a leg… well you can imagine when happens when I stand up. Even when I’m receiving help to stand and I’m clearly in pain! Even as I am now, having become an “I don’t care what anyone thinks” woman, I still stay sitting far, far longer than I should out of fear of people seeing me stand and passing judgment. Every time I’m out of the house in the wheelchair and I need to stand, images flash through my head of long standing internet-based jokes: i.e. the woman rising from a wheelchair to get a bottle, the text reading “There’s been a miracle in the alcohol aisle!”
The phrase “wheelchair-bound” gives people the idea that every single person in a wheelchair is utterly unable to move their legs, let alone stand. But that doesn’t ring true for so many of us. Out of all the wheelchair users I’ve met, only one cannot actually move his legs at all. Over 20 people I can think of right now are able to stand for varying degrees of time, though they make regular use of a wheelchair. The sad fact on top of all this is that most of these people have been called fraudulent and insulted or verbally attacked by strangers who saw them stand.
I’ve noticed that being in a wheelchair has a habit of giving people leave to talk about me as if I’m not there. People will talk to my partners about me, literally right over my head, as if I’m not there. Even if the conversation is focused entirely on me, they’ll talk to them. More than once I’ve asked the driver to put the ramp down for me to get on a bus. On several occasions the driver has then asked my partners if they can just get me on without the ramp. Usually Vanessa is good at telling the driver to get the ramp down (which shouldn’t be needed as the ramp is there for safety reasons!)
On one occasion the driver ignored my protests of needing the ramp, and said he could get me on even though I was saying I would like to do it myself. He came behind me tipped my wheelchair backwards and shoved me onto the bus with no ramp and considerable force. My chair is not weighted or positioned to let me lift up my front wheels. It’s a lightweight chair, so it’s also a touch shaky. It was the best I could afford and I love it. It just isn’t built to do wheelies and hasn’t got very good shock absorbance. Afterwards, a few people came up (to my partners) to say how nice the bus driver was. Meanwhile, I was still shaking.
Because he saw me as “wheelchair-bound,” the driver decided I couldn’t make decisions about my own safety or mobility. He decided he could take control of my only form of mobility and tip me backwards against my will. Which is terrifying on its own. You know when you’re leaning backwards on chair, supported only by two legs and it feels like you’re falling suddenly? That was the feeling, but worse. After that I was roughly shoved onto the bus, which really hurt. I was also expected to be thankful that the driver was willing to do this for me.
People seem to think they can touch and move my chair without asking. They think that talking over me, to my carers, is acceptable instead of rude (as it would have been seen if I was able-bodied). It also seems to give people the right to assess my condition and disabilities and decide if I actually need the wheelchair, or if I am I just a lazy faker.
I’m still a person. Don’t treat me as less just because I’m in a wheelchair. Just treat me as if you were talking to a real person. Which I am.
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