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Breath & Shadow

Winter 2021 - Vol. 18, Issue 1

"Disability Dissonance"

written by

Alex Blank

The Oxford English Dictionary defines disability as an ‘inability; incapacity; weakness.’ Almost all of those are negative words—the latter being negative in its own right.

I never considered myself disabled. I have two arms and two legs, a working brain and an overactive heart. I am fine. Sure, I’m overwhelmed to a point of paralysis when I’m around people for too long, or when overloaded darts are being thrown at all of my senses. I’m exhausted from always trying to over-exist in a certain way, instead of simply being. I seem to be over-everything, really, rather than under.

‘I’ve always felt different’ seems to be an expired kind of narrative. Because of that, I didn’t want to assume that I needed any sort of special treatment. I have to suck it up was my mantra. It didn’t matter if I felt suicidal; it was my fault that I was at a war with my own mind, that I couldn’t forgive myself for being somehow intangibly “different.” I couldn’t forgive myself for not being able to prove that I was different.

In 2019, by the end of February, I had dropped out of university. I decided to change my degree, so I re-applied to other institutions for other courses, and got accepted. I dropped out in the middle of a semester, though, and they let me stay in my student halls for the rest of the academic year, so I had a few months left in London to spare.

I was lucky. I could have done anything my heart desired—I could have met new people, I could have travelled, I could have gotten a job or volunteered. I didn’t do any of those things. Instead, I created a routine that locked me in a loop and protected me from any sort of change or interaction.

I signed up for various online courses, and I also worked on a novel (without believing it could ever turn into one). I went to a different coffee shop each day, treaded new routes in the city. I’d been going through a draining period of bulimia at the time, and keeping food in the house was too dangerous, so I had to resort to coffee-shop meals throughout the day, and ready-made supermarket food for my evenings at home. Everything was a one-time thing, and yet everything was stagnant. If not disabled, I was certainly disposable.

I re-started university in September 2019. In term two, I signed up to work as a university advisor at an event aimed at teenagers interested in a particular industry. It consisted of professionals coming in and talking about their work, as well as tasks students were asked to complete in small groups. The job was easy enough: ticking names off while students arrived, giving them a wristband and a handbook. I managed to prepare for every single aspect of the job. Well, almost.

Another thing I was expected to do was to create a fun and welcoming atmosphere, to exude excitement and have a smile glued onto my face. That, I’m sorry, is something I cannot do, as it turns out. I don’t know how to smile without a context. What was even worse was the expectation to mingle and ask them questions, such as: Are you getting along well? Do you have an idea for how to approach this? Do you need any help? And do not forget to smile!

It can’t be that hard, I thought, and it wasn’t. I only had to run to a bathroom stall - because my body was clenched and my eyes jittery - twice, only twice. I only had to almost trick another university advisor into going to the room full of students, while I could remain near the registry and watch over everyone’s bags, once, only once; except for the fact that I protected my registry shift all morning, so the afternoon was for me to work. Instead, I sat in that room, a registry / common room, looking at one of the groups. They were in the middle of creating a video for their assignment: cooperating, having fun, being together. As people do.

I am not incompetent. When given a task, I can be the most responsible, reliable and professional person out there. When one of the participants was suddenly in post-surgery pain and wasn’t capable of explaining where she’d left her bag, I was the one who remembered where she’d been sitting, so I rushed towards the lecture theatre and brought her the bag. I was in my action shoes. I knew there was something I could do that wouldn’t have to involve putting on a mask or smiling for no reason.

When it came to mingling, though, I couldn’t do it. Every time I came over and asked: ‘Are you doing okay?’ each group looked angry at me for doing so. They were very accommodating and chatty with all the other student advisors—but not me. At some point, I found myself standing at the bottom of a lecture theatre, like a performer on a stage, and I noticed a few individual students staring at me. They knew. They knew that, contrary to the others working at the event, I didn’t belong there. So I ended up in a bathroom stall. Twice.

For irony’s sake, the closest bathroom turned out to be one for those with disabilities, which has now become a possibility that cannot escape me. After millions of articles read and videos watched, and after psychiatric appointments survived, I keep asking myself: Am I, to some tiny extent, that word?

By that word, I mean autistic.

By inviting this possibility, am I disrespecting those with actual, tangible, uncontrollable disabilities? Am I only making this up? On the other hand, how can I control the paralysis overtaking me? How can I control always running away and hyperventilating? How can I explain years of isolating myself from every single opportunity, because I was too terrified of facing my spontaneity’s incompetence?

On some level, the space laid out for me on the spectrum may not seem dire. I will suffer through it, and then I will wake up and try again. And again. But I don’t think this is how it works. My capacity to withstand those limitations is finite. I’m afraid that one of those days, I will become too contracted to do things. I will go back home and I won’t say: ‘I will never do this again,’ as I usually do. What I will finally resort to is: ‘I will never do anything ever again.’ And I’ll stick to it, because alienation is too tempting not to grasp, if the temptation of it is already out there, voiced out, witnessed by my plush lemur and the calendar on the wall, marked with future plans written in pencil and later rubbered out.

I don’t want to dramatize or present myself as someone incapable of performing the easiest tasks. I know I can do things if I have a clear task, if I’m passionate, if I don’t feel like I’m a burden. Most of all, if I get to be alone to do it. But I also know there is something in me, flowing through my veins, that paralyses me, something I don’t know how to control. Should I let it slide, should I suck it up? Or should I listen to my body? It’s quite trendy these days, I suppose, the ‘listen to your body’ premise, whatever it means.

The way I see it, I have two options. I can either acknowledge and face a scenario where I decide to give up, and, consequently, embody an actual invalid, never leaving the house and shrinking my zones of comfort. Or, I can speak out about my limitations without trying to brush them off, and hope that people around me will understand. That they won’t look down on me, and consider me lazy, privileged, stupid, or incompetent. That I will feel allowed to exist on my own terms, without having to apologize for every step I take. That I won’t be terrified of using the words ‘high-functioning autism,’ which still doesn’t come naturally to me.

Or maybe I’ll stick to writing articles, stories and essays in my room, without looking anyone in the eye. That seems easier.

A London-based student on an autistic spectrum, Alex has been experimenting with various forms of writing for the past few years. Through prose poetry, journalism, fiction and so on, she’s continuously finding and refinding her voice. She’s a culture & lifestyle editor and writer for Roar News, and her work has also appeared in publications such as HuffPost UK, Strand Magazine and Heliopause Magazine.

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