“There aren’t special scissors in the real world.”
I discovered my love for literature and creative writing during my senior year of high school in Mr. C’s AP English class.
It was the only class I could physically attend, and even then, I usually only made it once a week — sometimes less.
I used a lightweight suitcase as a backpack to roll so I didn’t have to lift it and risk hurting my joints. I sat in a cushioned teacher’s chair because the students’ chairs were too hard and left bruises on my spine.
The classroom was not accessible. I stood out. But there was “nothing more” the school could do for me.
Mr. C wore a cow costume every Friday and played Sublime on the stereo and let us study, or write, or read. I wasn’t allowed to have a computer to take notes on and I refused to have a scribe, so I mostly sat there, not wanting to bring any attention to myself.
One day, Mr. C strolled over to me, lip syncing to the song blasting, and squatted down next to my chair. The air smelled like chalk and old books. I shifted in my seat.
“On Monday we’re going to decorate a huge poster board with our favorite quotes from Sir Gawain,” he said. I sat up a little taller, nodding, feeling important that he was telling me this — that he came over to talk to me. He bobbed his head to the beat and opened his mouth:
“We’re going to all sit on the floor to draw, so you should skip out for this one, and I’ll just email you the homework. Don’t worry about it.”
Mr. C patted the back of my chair and started singing louder as he walked away.
There were accessible options, of course. We could put the poster on a table at my height. I could draw part of it up there, or on a separate sheet, and attach it later. We could do a different activity that didn’t involve fine motor skills or bending down. I could type something up. I could, I could…
If I had said something, I would’ve been too much of a bother. If I asked for an accommodation, I would be burdening a teacher I loved.
I deflated. Sunk lower into my chair. My body wasn’t important enough for that. I didn’t think I was important enough — and, worse, I didn’t want to be.
Our world, our country, our streets, our homes, they don’t start off accessible — not without thought, not without a request.
This reinforces the painful idea that disabled bodies are burdens. We’re too complicated — too much effort. It becomes our responsibility to ask for help. Accommodations are both necessary and an inconvenience.
When you move through life able-bodied, it seems that the proper accommodations are already in place for disabled bodies: ramps, elevators, priority subway seating.
But what happens when the ramps are too steep? The elevators too small for a wheelchair and a caretaker? The gap between the platform and train too jagged to cross without damage to a device or body?
If I fought to change everything that wasn’t accessible to my disabled body, I would have to mold society between my warm palms, stretch it like putty, and reshape its very composition. I would have to ask, make a request.
I would have to be a burden.
The complicated aspect to this feeling of being a burden is that I don’t blame the people around me. Mr. C had a lesson plan that I couldn’t fit, and that was okay to me. I was used to excluding myself from inaccessible events.
I stopped going to the mall with friends because my wheelchair couldn’t fit in the stores easily and I didn’t want them to miss out on discount dresses and high heels. I stayed home with my grandparents on the Fourth of July because I couldn’t walk the hills to see the fireworks with my parents and younger brother.
I consumed hundreds of books and hid under blankets on the couch when my family went to amusement parks, toy stores, and concerts, because if I had gone, I wouldn’t have been able to sit up for as long as they wanted to stay. They would have had to leave because of me.
My parents wanted my brother to experience a normal childhood — one with swings, scraped knees. In my heart, I knew I needed to remove myself from situations like these so I wouldn’t ruin it for everybody else.
My pain, my fatigue, my needs were a burden. Nobody had to say this out loud (and they never did). This is what our inaccessible world showed me.
As I got older, put myself through college, lifted weights, tried yoga, worked on my strength, I was able to do more. On the outside, it seemed that I was able-bodied again — wheelchair and ankle braces collecting dust — but really, I had learned how to hide the pain and fatigue so that I could join in the fun activities.
I pretended I wasn’t a burden. I made-believe I was normal because it was easier.
I’ve studied disability rights and advocated for others with my whole heart, a passion that burns extra bright. I will scream until my voice is raw that we are human, too. We deserve fun. We like music, and drinks, and sex. We need accommodations to even the playing field, to give us fair, accessible opportunities.
But when it comes to my own body, my internalized ableism sits like heavy stones in my core. I find myself tucking away favors as though they’re arcade tickets, saving up to make sure I can afford bigger ones when I need them.
Can you put the dishes away? Can we stay in tonight?Can you drive me to the hospital? Can you dress me? Can you please check my shoulder, my ribs, my hips, my ankles, my jaw?
If I ask too much, too fast, I’ll run out of tickets.
There comes a point where helping out feels like an annoyance, or obligation, or charity, or unequal. Whenever I ask for help, my thoughts tell me I am useless, and needy, and a thick, heavy burden.
In an inaccessible world, any accommodation we might need becomes a problem for the people around us, and we are the burdens who have to speak up and say, “Help me.”
It’s not easy to bring attention to our bodies — to the things we cannot do in the same way as an able-bodied person.
Physical abilities often determine how “useful” somebody can be, and perhaps this thinking is what needs to change for us to believe that we have value.
I babysat for a family whose oldest son had Down syndrome. I used to go to school with him to help him prepare for kindergarten. He was the best reader in his class, the best dancer, and when he had trouble sitting still, the two of us would laugh and say he had ants in his pants.
Craft time was the biggest challenge for him, though, and he would throw the scissors on the floor, rip up his paper, snot and tears wetting his face. I brought this up to his mother. I suggested accessible scissors that would be easier for him to move.
She shook her head, lips tight. “There aren’t special scissors in the real world,” she said. “And we have big plans for him.”
I thought, Why can’t there be “special scissors” in the real world?
If he had his own pair, he could take them anywhere. He could get the task done in the way he needed because he didn’t have the same fine motor skills as the other children in his class. That was a fact, and it is okay.
He had so much more to offer than his physical abilities: his jokes, his kindness, his antsy pants dance moves. Why did it matter if he used scissors that glided a little easier?
I think a lot about this term — the “real world.” How this mother confirmed my own beliefs about my body. That you can’t be disabled in the real world — not without asking for help. Not without pain and frustration and fighting for the tools that are necessary for our success.
The real world, we know, is not accessible, and we have to choose whether to force ourselves into it or try to change it.
The real world — ableist, exclusionary, constructed to put physical abilities first — is the ultimate burden on our disabled bodies. And that’s exactly why it needs to change.
Aryanna Falkner is a disabled writer from Buffalo, New York. She’s an MFA-candidate in fiction at Bowling Green State University in Ohio, where she lives with her fiance and their fluffy black cat. Her writing has appeared or is forthcoming in Blanket Sea and Tule Review. Find her and pictures of her cat on Twitter.