How it Felt to Use a Wheelchair for the First Time
For those of us with ankylosing spondylitis (AS), standing and walking for long periods of time can be very painful — so, many people with this condition use mobility aids like canes or wheelchairs. Personally, I don’t use a mobility aid. However, as my disease progresses, I may become an ambulatory wheelchair user. But until then, my disability is invisible — no wheelchair to signify that I’m disabled. I can pass as able-bodied and avoid a lot of the judgement that wheelchair users face daily.
I couldn't stand in line
But last summer, for the first time, I briefly experienced what it’s like to use a wheelchair. I was at a theme park with a group of friends. There was a ride we really wanted to go on, but it had an hour-long wait. The line didn’t appear to be moving quickly, so I knew I’d be standing in one spot for way longer than my body can handle.
I considered waiting on a bench outside while my friends went on the ride (as I had done before for the same reason), but I really wanted to try this ride. I spoke to the employee at the front of the line and they explained that the only option for people who cannot stand in the line is to borrow a wheelchair — as opposed to some other theme parks, which have options for people with disabilities such as waiting in a “virtual queue” (waiting the entire time without having to physically stand in the line).
I was scared
I was hesitant about the idea. I was scared what people would think when they saw a young person in a wheelchair, without a leg cast or visible disability. Would they think I’m lazy? Would they think I’m a fraud when they saw me stand up out of the wheelchair at the end of the line? I also felt embarrassed that I needed to use a wheelchair in the first place. My internalized ableism was roaring.
I wanted to be like the rest of my friends and go along with their plans, instead of complicating things by needing accommodations. I wanted to be a girl at a theme park, not a girl in a wheelchair at a theme park. But I knew that I could either decide to get over it, or miss out on a fun ride because I was ashamed. So, I sat down in the wheelchair and my friends pushed me into the lineup. They were very supportive, which lowered my anxiety about the situation.
I was visibly disabled
We were only waiting for an hour, but in that hour, I got a glimpse into my future if I do become a wheelchair user. I noticed the inaccessibility of the world as the wheels got caught on ridges and corners throughout the queue. Luckily, I didn’t receive any rude comments or questions from strangers — but it still felt strange, watching people look at me, wondering what they were thinking. Were they pitying me? Were they whispering to their friends that I looked perfectly fine? For the first time, I was visibly disabled. It was like standing naked in a room of fully clothed people. I couldn’t blend in and pass as able-bodied, as I normally do. I couldn’t protect myself with my privileged exterior — I was just as disabled as I was before using the wheelchair, but now, it was showing.
I often hide it
It helped me realize that I still hold some ableist beliefs myself. Clearly, I haven’t fully accepted my disability yet, as I felt so much discomfort from other people seeing that I’m disabled. In my day-to-day life, I usually hide my disability in public spaces, whenever possible. I live in a fantasy world where I’m perceived as perfectly healthy. There is great distance between my disabled identity and my able-bodied exterior. Something about the wheelchair made my disability seem real and permanent and public — and that gap suddenly closed. I realized that maybe I’m not as comfortable with my disabled identity as I’d thought, because so often, I hide it.
This experience also taught me that there is no winning with invisible disabilities. When I don’t use a mobility aid, I sometimes wish I did, so people would see that I’m disabled and take it seriously — allowing me to have a seat on the bus when I need it, for example. But when I did use a wheelchair, I wished to look “normal” and not draw attention to myself. It’s a complex situation that wouldn’t exist if there was more awareness of invisible disabilities and less stigma around disabled people in general.
I'm glad I used a wheelchair
I got to the end of the line, returned the wheelchair, and got on the ride — it was totally worth it. I'm thankful that I had the option because I know without using the wheelchair, I wouldn’t have been able to ride the ride. I’m also glad I got a taste of the experience of having a visible disability and worked through my embarrassment. If I need to use a mobility aid again in the future, I hope that I'll do so with confidence. I don’t want disability stigma to prevent me from living my life to the fullest.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?