I feel as invisible as my disability

I don’t want your pity, I just want to be treated like everyone else

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Why do I have to shrink myself down to fit in? Maple Sukontasukkul / The Peak

by Olivia Visser, SFU Student

If someone asks me how I am, I tell them I’m fine. I am not fine. My neck can hardly hold the weight of my head most days. My stomach hurts every time I eat. My entire body has a constant baseline pain that never seems to decrease. Some days I can’t stand for more than a few minutes at a time. Usually, my disability is so overpowering that all I can do to cope is pretend it isn’t there. Truthfully, being disabled makes me feel infinitely small. How can I fit into a world that gives me no space to be myself?

Over the years I have learned, mostly out of necessity, to give myself adequate love and care. Part of self-love is allowing yourself to be visible, but sometimes I make myself invisible to please others or make things easier for myself. I’m slowly unlearning this behavior. Part of unlearning this is acknowledging disability is a part of life. Maybe it’s not always the greatest part of life, but it is a very common human experience. Yet I still feel like I have to shrink myself down from time to time. 

For example, elevators can be tricky to maneuver without my cane. I try not to assume that someone doesn’t need the lift, because I expect the same level of respect for myself. However, what should be a quick trip to catch my bus can turn into 10 minutes of waiting for the elevator. It’s especially frustrating when, for that 10 minutes, I’m standing behind groups of friends who just want to skip the stairs. Being invisibly disabled sometimes feels like I need to forcibly take up space instead of having it immediately accessible, just like any other able-bodied person. I don’t like to forcibly take up space, so I pretend that I’m okay. I pretend that I’m like everyone else. I wait for the elevator, and I miss my bus, because I can’t afford to risk any additional pain.

If I do make my bus and need to take a disabled seat, people often glare at me. Why would a young person without a mobility aid need to use accessible seating? I can stand, but it isn’t always easy for me and is often painful. Having a guaranteed seat close to the door can be a game changer for me. Multiple times, I have hurt my wrists holding onto the railings on the bus. By the end of a long day, my body can be in excruciating pain. 

Yet, I am still terrified of taking up space. I feel like it isn’t mine to take. I worry that I don’t deserve it because sometimes I have better days and I can force myself to stand if needed. Days of pain from standing and holding on are sometimes better than the judging eyes of strangers. I don’t really know why I do it to myself — the imposter syndrome from disability is very real. Between struggling to convey the severity of my symptoms to doctors, to getting friends and acquaintances to understand without pitying me, the easiest thing to do sometimes is act like nothing’s wrong.

If I need to wear a brace, people at work and school will continuously ask me invasive questions about what it’s for. I understand their curiosity because I have it too, but sometimes I hate feeling the need to fulfill people’s “need to know.” The truth is a long and complicated answer that I usually replace with “I just hurt myself.” Most people don’t want to hear about someone’s genetic disease or they don’t know how to respond if I do tell them about it. More importantly, they aren’t entitled to that information if I’m not offering it up. To avoid long, awkward, and repeated conversations, I make myself invisible again and again. 

Since currently, society is not generally accessible — I hope for the normalization of disabilities and all their intricacies. The last thing that I want is pity from strangers. Instead, I just want to be seen and heard for who I am, disability and all. Moreover, I want to feel like I can take up space without being questioned about my legitimacy. 

For the sake of this article, I use the term “invisibly disabled” because it most accurately describes my experiences. It does not entirely account for the dynamic nature of disability and the many nuances therein. Disabilities are never truly invisible. If you know someone well enough you can spot their signs: mood changes, displays of discomfort, oversleeping, undereating, the list goes on. Disability looks different on everyone and is endlessly fluid.

I hope that in time people lose the impulse to shrink themselves down to meet a social standard — which should adapt to include those with disabilities. This can only come through a long process of self-love and affirmation, as well as a more widespread social effort to normalize the complexities of disability. Allowing people to comfortably take up the space they need is a process that requires practice and understanding, but small changes can make a big difference in the lives of your disabled peers. If you are able to take the stairs, take the stairs. When you’re on the bus, leave the accessible seating open. Most importantly, try not to assume that somebody doesn’t need the resources they use.