When People Judge Me for Being a Part-Time Wheelchair User

There are some things I believe people who’ve never been in a wheelchair will never truly understand. I’m sure there are things I, as a part-time wheelchair user, will never really understand either. In August, I took a vacation with my family to Universal Studios in Orlando, Florida. While I’ve been to amusement parks plenty of times, I’d never been to one this way before. This week, it was me and my wheelchair.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have Ehlers-Danlos syndrome, which is a connective tissue disorder that leads to frequent joint dislocations and chronic pain, among other things. I’ve recently discovered that I struggle a lot with standing for long periods of time, walking slowly, and walking a lot in general. So my family and I decided that bringing along my wheels was the best idea. We put the wheelchair in the car and set out for Florida.

As I mentioned before, there are things that are hard for non-wheelchair users to understand. There are things most people simply don’t have to think about, for example, the type of pavement on the ground. At Universal Studios there is a good amount of ground covered in different kinds of brick to help immerse people in the experience. I’m sure most people love this, and I also think it’s a cool design. The problem is that wheels on cobblestone aren’t the most enjoyable thing in the world. There’s a lot of bumping up and down, as well as jarring motions. There’s no way around that, so my dad pushed me along the cobblestone and artfully placed bricks as I wobbled around on the seat.

ADA compliant wheelchair ramps can be at a 4.8 degree or lower angle. If you’re considering building a wheelchair ramp, the lower the better! If you have a manual wheelchair, it is really hard to push yourself up a grade that high. All week long I found myself at the bottom of ramps I couldn’t get myself up, having to wait for a family member to get me. I’m an 18-year-old girl, and as you might guess I prefer to be able to do things for myself. When I’m using a chair after a lifetime of walking, it takes time to be OK with having to ask where you can go and when you can go there.

When you’re in a wheelchair, going to the bathroom is a little different than usual, if only in the sense that you need an accessible stall. I went into a bathroom once during the week and the disability stall was occupied. I waited outside of it for 10 minutes, and when the woman inside came out, she looked mortified and began to apologize profusely for using the stall. I stopped her and said, “No need to explain, have a good day.” I often use disability stalls when I’m not in the wheelchair also, as I can’t always maneuver around in the smaller ones. Everyone has issues that may not be visible, and it’s important to give people the benefit of the doubt. I wouldn’t have wanted to explain myself and that woman shouldn’t have had to either.

On the subject of bathrooms, some of the disability stalls at Universal have sinks inside of them, for which I’m so grateful. It’s easier to access a sink that’s lower with fewer people around. I was able to wash my hands and leave the bathroom immediately. Once during the week, a mother with her child saw me leave the stall and begin to leave the bathroom, and she said loudly to the young girl, “Even if you were like that, I’d still make you wash your hands.” I’m not going to lie, that hurt. This woman made me feel dirty somehow, despite the fact that I had just washed my hands. You have to choose your battles in life, and that wasn’t one that I wanted to fight. I went about my day and my life, but sometimes I wonder how many people in the world think about people with assistive devices the way she does.

When you’re in a wheelchair, sometimes you get to skip lines. What a lot of people don’t understand about this is that it doesn’t necessarily get me on the ride faster, it just gets me past the part of the line my chair won’t fit through. Then I spend five more minutes getting myself out of my wheelchair and into the ride, at which point the people who were originally in line behind me are now on the ride ahead of me.

People usually don’t care about this, because they can see it’s necessary for you. The problem arises when people see you stand up. Then they whisper and stare because there seems to be this idea that if you use a wheelchair you aren’t able to stand up or use your legs at all. However, that’s not the case for a lot of people like me. I need my wheelchair to avoid standing or walking slowly. No matter how well I feel I am doing physically or how much I go to the gym in a week or walk around my college campus, if I find myself going to a museum, amusement park, or anything else with that kind of movement, you’ll see me in my wheelchair. If I don’t use my assistive device for the time while I’m in these spaces, I’ll need it for weeks after wherever I go because of debilitating pain.

I am very lucky to have a loving support system filled with people who understand my situation. I had a great vacation with only a few (sometimes literal) bumps in the road. People on the outside don’t know me or my story and may make assumptions. I didn’t write this as a complaint, but rather as an explanation and a story. Next time you see someone get up from a wheelchair and walk, don’t make snap judgments. The way to better the world is through kindness, so just do your best.