Fighting a World Not Built for Me as a Disabled Young Adult

Everyone who meets me likely suspects that I have a disability, unless they think I use an extremely expensive custom wheelchair for fun. That plus my chronic illnesses have impacted my life a lot.

Some of that impact has been positive. I mean, I’ve befriended a lot of awesome, fellow disabled and/or chronically ill people whom I’d hate to have to live without. And I suppose there’s the whole “I’ve learned to appreciate things” thing, and many of my current hobbies may not be in my life without it, etc. But that’s not quite what this post is about.

It’s hard to deny that my GPA and AP exam scores could’ve been much higher without transverse myelitis, and I could’ve participated in so many more extracurriculars. Where would I be in my running career if I were still able-bodied? Plus I’ve dropped more classes than I care to admit during the last five years because between hospitalizations and long flares causing me to miss weeks of school at a time, it can be incredibly difficult to keep up sometimes.

I’ve tried my best and so far, for the most part, I haven’t been unsuccessful. But it hasn’t been easy, and I feel like I’ve barely done anything other than school; after sophomore year, my only extracurricular was choir, and I never got a job in high school. I rarely even hung out with friends during the week, because I needed a two-hour nap after school every day in order to have just barely enough energy for homework. Meanwhile, so many people are able to do it all and, as a result, I feel so inadequate. I feel like they’ve surpassed me in every way because, for everything I accomplish, my [incredibly smart, gorgeous, and driven] friends have achieved that plus 10 other amazing things.

And that was just high school. If my freshman year of college taught me anything, it’s that life just keeps getting more and more difficult as time goes on which is, admittedly, the exact opposite of what I hoped for. I’m still only 19, so I know that I can’t speak for all stages of life, but I can express my experiences and thoughts and fears.

See, right now, I’ve been thinking, and I realized just how scared I am for the future. There are many reasons for this — some most human beings can relate to — but at this moment, the most prominent is my fear that I won’t ever get a good job. I just so desperately want to be a Physician Assistant but realistically, will I be able to achieve that goal? Or will all of that schooling (assuming I make it, which will be a battle in and of itself) be for nothing?

You might think that this is an irrational fear, especially if you know me well and therefore actually see me as an intelligent, “normal” human being. But as dramatic as I can be sometimes, I know this fear is valid, and I’m not the only disabled person who worries about it. I’m afraid employers will take one look at the wheelchair (and/or crutches) and sucky hands and decide I’m not competent. And it’s true that, technically, I probably can’t bring as much physically to the position as my able-bodied counterparts. But I’m smart, and I’m determined, and I am able to adapt.

Just ask my mom — at 13 years old, newly paralyzed, with no hand function, no right arm function, and very, very little left arm function, I was stubbornly determined to learn how to feed myself. In eighth grade, I shakily scribbled most of my own notes with my weak, non-dominant hand, refusing to rely on the assigned note-taker next to me. At 15, sick of relying on other people, I figured out a way to tie regular shoelaces by myself.

I’m not saying I’m super amazing or anything; I’m just saying I know how to adapt and I know what I’m capable of. I’m not in any way worried that I’ll be physically unable to be a PA… I’m just afraid other people will think so, because they don’t know me at all. Instead, all they’ll see are my physical limitations (which are getting worse and worse), and I’m afraid my able-bodied competitor will be chosen over me every time, despite the fact that it’s technically illegal to discriminate in that way.

And even if I manage to get a job… Well, the fears don’t stop there.

I’m receiving a near-failing grade in one of my classes this past semester because I missed the last three weeks of school due to being hospitalized, and my professor just didn’t think I could finish such a large amount of missed work over the summer. This is sucky, but overall not that big a deal. However, what if next time, instead of a low-level course that I technically don’t need for my degree and can easily retake, it’s a job? What if I’m eventually fired because of things I can’t control, because I’m “sick” more than most people? I can try my best to not require hospitalization and work through days when my pain and fatigue flare so much that I can barely lift my head off the pillow, but I already tried that this year and you can see how well that worked out for me.

When it comes to my abilities, I usually don’t say I “can’t” do things (besides, like, run. Or jump. Or do a chin-up) because I hate feeling weak and especially hate when people pity me. But these fears are becoming increasingly real as I get older — especially as my body fails me more and more — and I hate that I have to be afraid that other people’s ableism could potentially inhibit me from following my dreams.

I wish more people saw me for who I am. I don’t see myself as particularly “strong” or “inspirational.” I mean, I am disabled. I am chronically ill. I definitely won’t deny that, as those things are a huge part of me. But I’m also just a 19-year-old girl who loves singing, writing, and swimming. I am a college student who is fascinated by the human body and modern medicine. I am a daughter and sister who loves and values her family more than anything else in the world. I am sensitive, empathetic, “too” kind, creative, hard-working, stubborn, independent, determined.

Yes, my disability is a part of me, but it isn’t the only part of me. I just hope that the people I meet — employers, bosses, colleagues, society — will eventually realize this, because I’m just so, so sick of fighting against a world that’s not built for me.

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