5 Things I Learned After Getting My Wheelchair

That’s right. I’ve spent my entire life relatively able-bodied and walking around, and now I use a wheelchair pretty much any time I leave my apartment. My limbs are weak and prone to aching and chronic pain, so I use a wheelchair to conserve the energy in my legs. It has been 237 days since I first started feeling pain and weakness in my legs, and I don’t know if I’m ever going to get better. Here’s what I’ve learned so far:

People stare. Like, a lot.

This was (and still is) the hardest thing to get used to. I went from being 5'6" when walking around to about 4'5" while seated in my wheelchair. It’s very natural for humans to look at others’ faces while out and about, but if you’ve ever used a wheelchair or had a similar visible disability, you’ll know that suddenly everyone’s eyes are trained on you. After a while, it gets very awkward meeting someone’s gaze, and then watching them quickly look away and pretend that they weren’t staring at you, and then you look away and pretend that you aren’t embarrassed having someone stare at you, and you both just feel silly.

I felt studied, and scrutinized, even if they never even said a word to me. In my mind, I think they’re wondering, “She looks young, she looks healthy, why is she in a wheelchair?” I always get self-conscious when adjusting my legs or transferring in and out of my car, because people can instantly see that my legs clearly aren’t paralyzed, so why should I be in a wheelchair?

It took a few weeks until I found my first life hack as a wheelchair user: stare at people’s abdomens. Staring at the ground while wheeling around doesn’t really work, being a wheelchair user means constantly being aware of your surroundings. So, if I stared at people’s abdomens rather than their faces, I wouldn’t catch them staring at me. I still know they are staring, I can see it in the corners of my eyes, but this way I don’t embarrass them by getting caught staring and I don’t have to see the pity on their faces.

Pushing a wheelchair is hard work.

This can probably be credited to a bit of internalized ableism, but I never considered just how difficult and straining it can be to push yourself around all day. I use a manual wheelchair, a fairly light one, a little over 30 pounds, but that's still almost 200 pounds of weight that I’m moving using just my arms. Arms that, by the way, aren’t that healthy either. Arms that aren’t immune to chronic pain and fatigue, swelling and aching in the joints especially.

The first few weeks I got so tired. My arms just burned after pushing myself through a couple of hallways. I had a handful of lessons with a wheelchair instructor who taught me how to correctly handle myself and keep my pushes as efficient as possible to save my strength. Even still, it took a long time to build up the muscle.

After several months of being in the chair, my arms have gotten relatively strong. I no longer tire out from pushing myself around, although hills and ramps will always be a struggle (more about that later). I’ve also gained callouses on my hands from constantly enduring pressure from my push-rims. The first few weeks of pushing my chair were difficult, dealing with blisters and bleeding as well as fatigue and pain. Now, I proudly show off my callouses as trophies of my hard work.

Being pushed is not very fun.

This one may not resonate with other wheelchair users and is likely connected to my strong need for independence and inability to ask for help. Personally, I hate being pushed in my wheelchair. I hate being perceived as helpless and weak (even though at times I am helpless and weak) and hate not being able to decide exactly where I go. Being pushed is often necessary due to terrain, amount of people, fatigue levels, etc., but I will always prefer to push myself. And when I do need someone to push me, I prefer it to be a close family member or friend.

Being pushed around, literally entrusting your mobility to another person, is an incredibly anxiety-inducing action for me, which is why it’s difficult to entrust my well-being to any random person. Again, I don’t know if other wheelchair users experience this, I just know I prefer to be in charge of my mobility as much as possible.

The exception to this, however, is children. The only children brave enough to approach me in the wheelchair are family, but when they ask to push me around, or race me with another child? Absolutely. They may not be able to push me very fast but they will try with all their heart and have the most fun doing it, too.

Not all ramps are created equally.

I specifically remember watching a video on Instagram a few weeks before first becoming sick. The video was a wheelchair user showing off an outdoor lift in a big city. There was a large flight of stairs, and in the middle, a place where a wheelchair user could wheel on, get lifted to the top, and then wheel right off. I remember thinking, “Yes, this is cool and innovative. But why would you bother with a ridiculously expensive lift when a ramp can be installed for a fraction of the price?”

Oh, how I ate my words. Very quickly after getting my wheelchair, I learned that ramps are useful, but also very frustrating. What looks like a slight incline while walking can actually be very difficult on wheels. But still, not all ramps are created equally. Some of them are slight and easy enough for me to wheel up without breaking a sweat. Others are more difficult, sometimes involving several tight bends and steep inclines that take an embarrassingly long amount of time to wheel up, especially when your walking friends are just awkwardly waiting for you.

And other ramps are downright impossible. At my university, there is only one accessible entrance to a specific educational building, and it is all the way at the top of a massive ramp, both long and steep. I still have not managed to get up all the way on my own. So, every time I have a class in that building, I wait until a strong-looking person comes by and ask them to push me up the hill. Yes, it is usually awkward, and no, no one has ever declined to help me before, but it’s the best option I have. I would kill and die for a fancy expensive lift like the one I saw in that Instagram video so long ago.

Accessibility is something we don’t talk about enough.

It is true, we are getting better. Newer buildings are built with specific guidelines in mind to make them more accessible, but that doesn’t mean it’s a perfect system. In some buildings on my campus, there are no accessible bathrooms for me, so I have to exit the building and go to the one next door just to use the restroom.

Grocery shopping is incredibly difficult, as many stores have gotten rid of their small plastic baskets, instead favoring larger carts (that are proven to cause customers to spend more). Unfortunately for me, that means unless I bring a large basket with me, I can only buy as much as I can carry on my lap. Not to mention that I need help whenever anything is higher than my fingertips can reach. Needless to say, grocery pickup services have been a lifesaver.

Bathrooms are also difficult. It seems like every time I try to use a bathroom with four regular stalls and one accessible stall, someone has chosen to pamper themselves by pooping in the accessible stall. And, once I’ve taken care of my business, I have to find a sink that is low enough for me to wash my hands, close enough to a soap dispenser, paper towel dispenser, and trash can, so I can avoid pushing my wheelchair while my hands are wet. And I try my best not to block the flow of restroom traffic with my chair, although that can’t always be helped.

There are so many different facets to accessibility that most people don’t even consider because they’ve never had a reason to. Once you become disabled or become close to someone who is, your eyes become opened as to how inaccessible the world truly is. It was only after I made friends with several people with achondroplasia that I realized how the world is so inaccessible to them. It was only after I met and spent time with someone who is blind that I realized how much more effort has to be put into safely existing in public.

I encourage you, kind reader who has so graciously listened to my frustrations, to learn more about accessibility and inaccessibility. Take on one facet or two, don’t try to tackle disability and accessibility as a whole. Think about how you could help battle inaccessibility in your own day-to-day life. Maybe learn a couple of signs or point out accessibility issues in the building you work in. Yes, it’s a systemic issue, but change starts small.

That’s five things I’ve learned so far since getting my wheelchair. Maybe in another 237 days, I’ll have five more things to write about. But until then, it’s one push at a time.