It’s Okay if your Disability Bums You Out

In the beginning of my Freshman year of college, an acting professor had an abled bodied student imitate my disability for a performance project. When I along with the others in the class vehemently dissented to this, the professor publicly insisted that I just wanted to see myself as abled bodied, because I resented my disability. Since it was an autobiography through movement, she condescendingly explained, to ask that my story be portrayed by an entirely abled body would be to take advantage of the project to see myself as something that I am not. It was a matter of discomfort with my own body, she screeched in front of my peers. The professor had known me for about 6 weeks.

That’s not true, I said through my anger, my 18 year old sense of self under attack. I’m happy with my body as is, you’re missing the point. I was employing a lifetime of indoctrination of “I’m perfect as I am”, not yet ready to accept that the reason this person’s words stung so much was because there was truth to them. That day in class has haunted me for years, the venomous You don’t like your body bubbling to the surface when anyone or anything brought up that very feeling. No. I would think, steeling myself: You’ve worked too hard on this vessel to be dissatisfied with it.

It wasn’t until very recently that I was able to allow myself frustration surrounding my disability and more specifically, the barriers I face on a day to day basis. I don’t remember a specific moment I really began to accept that ache, but I know that it came along with the realization that I’ve achieved the pinnacle of independent living, and was still jumping hurdles of inaccessibility and ableism. This is, for all intents and purposes, as good as its going to get. I’ve done my work. And I still have Cerebral Palsy after it all. And when things suck, things suck. At this point, who am I putting on a facade of impenetrable bravery for? My movement professor? I’m the one living with and navigating disability, and I celebrate the triumphs, so why shouldn’t I get to cry about it, too?

The answer is that abled society on a macro level, boiled down to several adults in my upbringing on a micro level, are and were uncomfortable. People who don’t have disabilities are often uncomfortable with the subject of disability because it reminds them just how random their own health is, so the fact we disabled people may even have strife with our “misfortune” is just too much guilt to bare. This manifests in an overly positive narrative surrounding disability, especially physical disability. Abled people LOVE stories of people “overcoming” disability, and seeing us fulfill hobbies and goals that abled people do all the time without comment. The constant push of the positive has an anxious quality to it, as if to say See? Their lives aren’t that bad! Look at them, having jobs and hobbies. Must be a sweet life of inspiration- I have nothing to worry about. This ideology is so prevalent that the more grimy parts of disabled experience are not only forgotten about, but erased entirely. As a result, I as a person with disabilities will hide feelings of sadness or resentment, that actually exist side by side to disability pride. Self love and hurt are not mutually exclusive.

And the hurt is as real and consistent as every other part of disabled experience. For every video of a child with disabilities taking those triumphant, tentative first steps, there are a hundred tears that weren’t caught on camera. Enough hiding behind vague theory, though: I recently came face to face with my own hurt. It was days before my 21st birthday, and in the short time I was staying with my parents before school, I got a chest cold that completely overwhelmed my body. Coughing, in spasms, and exhausted, I could barely get out of bed. I had plans to go to meet a good friend of mine from college in a small beach town about an hour away the day before my birthday. I hadn’t seen her in a year, and we had plans to soak up the last bit of summer sun and go out to my favorite restaurant. I was so excited, having hung onto it since we made the plan weeks prior. But the night before I was supposed to catch the bus, I woke up unable to breathe, and had to cancel. That next day into and beyond my birthday, I felt like a shell of myself, barely eating and so exhausted. Meanwhile, my abled friends who I had just done a week of volunteer work with were getting back into their day to day lives which I had a front row seat to thanks to social media. They all just bounced back from a week of hard work and little sleep, whereas that level of exertion was just now catching up to me, and I spun into angst as I began to compare bodies.

When my mom got home from work the day that I was supposed to meet my friend, I was sitting on our dining room bench in the same T shirt I had worn yesterday, with a sea of used tissues around me and a blank stare affixed on my face. “How are you, honey?” she asked sincerely. “Not great.” I said hollowly. “I guess I just really wanted to see Jordanna.” “Mm hmm.” she said solemnly. “And I just…” my voice trailed off for a moment. “…Don’t understand why my friends get to jump back into everything while I’m stuck on the couch. This is not how I imagined 21.” I said, my voice cracking on the last part. My mom looked at me from across the table. “You can cry, baby.” And then I did just that. Tiny droplets that I wiped away quickly at first, and then full on blubbering. I started to talk about my movement teacher, and feelings of being trapped and inadequate in my limitations. My mom listened patiently as I took a breath and said that I loved my abled friends, but sometimes hearing about everything they’re doing just reminds me of what I’m not; what I can’t. And how I don’t tell them this because I want to know about their life, so that sadness builds in me as I remind myself again and again of the difference between myself and them, the difference I had convinced myself I am proud of. When I was done, my mom looked at me and said gently “That makes total sense. I’m so sorry you are feeling all of this.” And then we just sat at the table for a few minutes as I got myself together, and my mom started to tell me everything I am doing, reminding me not to discount my own path.

It is this presence of abled people like my mom that gets me through those moments now; the ability to simply share in harsh realities without jumping to fix anything. So far, disabled adulthood is full of those hard moments. Going back to school as an on-campus resident is reminder after reminder that I’m not like the others in my dorm. And I am learning to allow myself sadness when I’d rather be up and about like the others, while also knowing that on the whole, I love this life. Part of my ability to hold all of that is thanks to a newer, full support system of abled people who have a deep love for me and sit with me in it all.

If you are disabled and reading this; it’s okay if your disability bums you out now and again. It is after all, a dis/ability. To abled people reading this- resist the urge to share that sickly sweet facebook post about a disabled stranger. Fight the urge to solve every problem, and instead practice just sitting with it. And if my movement teacher is reading this- your comment really messed with me for a long time. I wish I had had the courage to tell you the truth then, but better late than never: sometimes, I do wish I was abled, because sometimes, this ‘disabled’ thing is really fucking hard. I’m holding it as best I can. I hope you can, too.

Today, this is where she stands.

~Sonya

 

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