You know that trend going around on TikTok with Folding Chair by Regina Spektor as the background music? “I’ve got a perfect body, but sometimes I forget,” has been ringing in my ears for the past two weeks. I love the song. Regina has been one of my go-to artists since Freshman year of high school, but the discourse surrounding this song is what has been sticking to my mind like a post-it note. 

Almost everyone using the song technically fits the beauty standard. Slim, tall-ish, white, eurocentric features, able-bodied. Now, of course everyone is entitled to their feelings about their body, regardless of whether or not they fit into the beauty standard. But, each TikTok video started to look the same. I wanted to see wheelchairs, walkers, prosthetic limbs, canes, walking sticks, anything that might make people do a double take and realize that disabled people have perfect bodies, too.

So, I thought about why that appears to be too much to ask. Why don’t we see more disabled people in trends and discourse about body image? Or even body positivity? Even after participating in this trend myself–after trying to look at my body as something beautiful and not a half-working, half-worthless bag of bones–this is the only conclusion I could come to: It has never been safe for disabled people to talk about their bodies outside of a hospital, therapy clinic, or doctor’s office.

It’s obvious to many people how underrepresented disabled people are in mainstream media, but what I don’t think is obvious is the effect that this lack of representation can have on young disabled people’s view of their bodies, or at least, my body. 

I’ve dealt with body image issues since middle school. 7th Grade to be specific. But it wasn’t your typical Mean Girls-esque “my nail beds SUCK” kind of deal. I became hyper-aware of how my body was perceived by my able-bodied peers. I was self-conscious about how I moved around, how I took up space, how my body made other people feel. I was insecure about my collarbone, my hips, my knees, my legs, or any area that my disability highlighted, whether that be the actual disability itself or things caused by my disability. 

I’ve been underweight my whole life, and when my disordered eating began to take place as a result of trauma, my weight became more of a prevalent topic in my daily life. Now, I’m well aware that skinny, lanky bodies are sought after, and even though skinny-shaming is harmful, it will never have the same systemic impact that fatphobia does. But, my skinniness contributed to my fear of “looking” sick. Of being one of “those” disabled people. ”Those” meaning the disabled people that have to take medication, have surgery, or any other physical factor or experience that made it more obvious that they were disabled or sick. (This was a fear rooted in my own internalized ableism, and a fear that didn’t really make sense for me considering that everything that was going on with me was visible and physical-I guess I just didn’t want more attention put onto me. I was already examined by strangers enough.) 

The discussion around my weight started as part of preparation for a surgery. It was not an easy pill to swallow when a neurologist looked right into my family’s faces and said that if I went under anesthesia at the weight I was back then, I could die. I never truly took the time to look at my weight or my body as a “bad” thing until someone said it could be the cause of my death. 

But, even before that day, I had still fallen into this pattern of thinking that my body made me unattractive, unwanted, and something to be left ignored or alone. It just felt obvious. All of my friends started being pursued romantically in ways that I wasn’t. I was asked out as a joke by the boys in my grade because apparently the idea of taking the disabled girl out on a date was something to laugh at. Everyone around me made it silently apparent that my body wasn’t wanted by other people. People would stare at me like they had just seen the most unfortunate circumstance a person could be in, and the comments that were made didn’t help either: “I’m so sorry honey, I’m praying for you.” Like my body was something to be prayed away, and my God, even though I was pre-pubescent and not even old enough to drive, I wanted to feel like a first kiss was guaranteed. But at that point, I felt like I would be lucky to even hold someone’s hand. 

I started doing theatre in the 6th grade, and every time we would end a show, a cast party would be held, and we would all watch it together. But, my scenes were the only scenes I would try my hardest to never watch. Of course, someone would end up yelling out my name and I would have to look, and what I saw made me squirm. My knees were glued together, my clonus, or involuntary rhythmic muscle contractions, shone on full display, as well as the tiny bruises on my calves from constantly losing my balance. I was disgusted with myself. 

“I look weird,” I whispered to the laughing castmate next to me.

“I don’t think so,” she responded, shrugging her shoulders with her back perfectly straight and knees nowhere near touching.

Yeah, of course you would say that, able-bodied girl with beautiful hair and maybe an even more beautiful boyfriend.

And if we look at the facts, I’m not the only one who has experiences like these. According to the National Eating Disorder Association, research shows that many members of the disability community feel extraneous amounts of pressure to have what society deems a “perfect body.” What can we assume causes that? Not just the lack of disabled representation in the media, but also the way we are represented, even though it’s rare. 

The bodies of disabled people have been used for jokes, shock value, to gather pity from the audience, to make the main character look like a better person. It’s no wonder me and so many other young disabled people can’t stand the way we look. We have been taught passively for years that our bodies are disgusting, worthless, or not worth praising. The environment that kind of representation creates for disabled people is something that is unlivable and unhealthy. 

So how do we fix this?

Like many people, I don’t have a specific or straight-forward answer. But here’s where we might start:

Invite disabled people into conversations about body image. Start creating safe spaces for disabled people to talk about and show off their bodies, Start examining the way we approach topics like body neutrality and body positivity. No, it’s not realistic to love your body all the time, and no, not everybody has a fully functional body that is perfect at going from room to room, but our bodies are beautiful. Our bodies are worth wanting and worth celebrating.