I’m Done Punishing My Disabled Body for Your Comfort

Before I knew I was disabled, that word meant wheelchair, impairment, inability 

The word “disabled” was my cousin Brenton, his feeding tube, his seizures. It was impolite to point out our differences because we always said that all kids are the same. Except the ones who aren’t. They aren’t different, though. Not the same, and not different.

When I was diagnosed with Ehlers-Danlos syndrome (EDS) at age 13, I clung to this gray area: not the same, and not different. My lax limbs, the pain that vibrated in every single one of my joints, in all the gaps between my bones, this was not normal. Through therapies and school and counseling, I realized that I always had one goal in mind, which was to be able-bodied once again.

I wasn’t particularly athletic before, but did the usual gymnastics and dance that many people with EDS fall into. I always had the growing pains, the nights where I pushed my shins against the cold metal of my bed’s guard rail for relief. And I had the unexplained injuries too, sprains and twists and deep, lava-like bruises.

Once the pain hit at the onset of puberty, I came entirely undone. I have a ridiculously high pain tolerance but there’s only so much daily trauma your body can take before it shuts down.

This was understandable. Acceptable. (For the most part. Until it wasn’t.)

Able-bodied people get a little frustrated when we don’t want to push past the pain

I hear you. You want to make sure that I’ll be able to keep walking, that I’ll be able to drive, sit at school desks, keep up the “normal functions” of my body. Atrophy would be disastrous, I suppose. And god forbid this starts to impact my mental health. Depression? Let’s walk it off.

This doesn’t mean that we shouldn’t maintain our exercises. Our physical therapy (PT), occupation therapy (OT), aqua therapy. In fact, getting regular treatment and strengthening the muscles around our joints might help some of us to prevent future pain, surgeries, and complications.

The problem happens when the “right” way to do this disability, chronic illness, pain-all-the-time thing means getting our bodies to a place where they appear abled, and where we put our own comforts and needs aside for the comfort of others.

That means no wheelchair (the walk really isn’t that long; we can do it, right?), no talk of pain (nobody really wants to hear about that rib that’s sticking out of my back), no symptomatic treatment (only characters from films swallow pills dry).

Navigating an inaccessible world is an inconvenience, one that takes planning and mapping and patience. If we’re ambulatory, can’t we just save you a little time: push through the pain, leave those crutches at home?

When the intent is to comfort you, I am the “right” kind of disabled

At times in my life as a disabled adult, I was the kind of disabled that helps you sleep a little bit better at night.

I had chronic pain but didn’t talk about it, so that meant it wasn’t really there for you. I was managing health conditions with minimal medications. I was exercising a lot, and you were right about yoga! All that positive thinking!

I was walking and got rid of those mobility aids. I know that you are all worried about that darn atrophy, so I only took the elevator to the second floor in secret.

I even went to college, did the straight-A thing, ran a few clubs, wore heels to events, stood and talked. Of course, I was still disabled during this time, but it was the “right” kind of disabled. Young, white, educated, invisible. The kind of disabled that wasn’t so public. Wasn’t so inconvenient.

But pushing my body to be abled wasn’t helpful to me. It came with a lot of pain and fatigue. It meant sacrificing my ability to actually enjoy activities like kayaking or taking that road trip because the goal was just to make it through. Finish the task, uninhibited.

Right before I was diagnosed with EDS, my family and I took a trip to Disney World. I was in a wheelchair for the first time, borrowed from the hotel. It was too big and had a ripped leather seat and a giant pole on the back to identify where it was coming from.

I don’t remember much from this trip but I have a picture where I’m propped in that wheelchair, sunglasses hiding my eyes, hunched in on myself. I was trying to make myself so small.

Eight years later, I returned to Disney for a day trip. I posted a before-and-after picture set on all my social media accounts. On the left was that sad, small girl in a wheelchair.

On the right was the “new me,” the “right” kind of disabled person: standing, no mobility aids, taking up space. I captioned this with the flexing arm emoji. Strength, it said. It was a message for you to say, “Look at what I’ve done.”

Not pictured in the post: me, vomiting an hour in from the heat and my blood pressure dropping. Me, needing to sit down every few minutes from exhaustion. Me, crying in the bathroom stall because my entire body was aching and screaming and begging me to stop. Me, quiet and small for weeks after because that one day, those few hours, knocked me down, broke the pain scale, and put me in my place.

It took me a long time to learn that what I was putting my body through was not preventive care for me. It was not for pain treatment. And, genuinely, I couldn’t care less about atrophy.

All of this? This was so that I could be the “right” kind of disabled to feel a little less guilt, to burden others less, to be good.

The truth is, I’m not your definition of a “good” disabled person

You won’t see my face up on a poster with the phrase “What’s your excuse?” or “Inspire others.” I don’t do things “right” anymore, unless I’m doing them only for me.

So, I don’t exercise when I need to save my energy for school or work. I take naps as needed throughout the day. Sometimes, cereal is my breakfast, lunch, and dinner. But when doctors ask if I’m getting in cardio, a healthy diet, strengthening routines, I nod and tell them, “Of course!”

I count cleaning as movement for the day. My posture is atrocious but I position myself however I can for momentary pain relief. I’ve stopped covering my yawns on Zoom meetings.

I take the elevator whenever I can because the stairs are just not worth it. I use my wheelchair at the zoo and the mall, and when the handles catch overflow from tight aisles and objects fall to the floor, I let my companion pick them up.

When my body is swollen and angry in the heat, I cover myself in ice packs and take too many ibuprofen. Every day, my joints dislocate and I groan on the couch. I toss back and forth. I complain.

I don’t take vitamins because they’re too expensive and I truthfully don’t notice a difference. On bad pain days, I allow myself moments of self-pity and sips of white wine.

I’m not ever going to run a marathon. I’ve heard of CrossFit but I’m broke and disabled, so there’s your answer. Walking will never be painless. If I need a leg day, I’ll worry about that on my own time.

I will not be doing the heavy lifting. I’m going to have to ask for help, for favors, for you to accommodate me.

My body is not easy to understand. It’s not cute and neat. I have permanent polka dots on the insides of my elbows from IVs and blood draws, and stretched-out scars, and knobby knees that turn in when I stand.

It’s important that you know that I am disabled. That you really understand what that means. That you accept my disabled body as it is. No conditions, and no “right” way to be disabled.

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 fiancé 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.