'Beauty comes with a sense of conformity': writer reflects on body positivity as a disabled person

Today, there are more disabled people in commercials, in movies and on television than ever before. 

Writer s.e. smith, who uses the pronoun they, says while that shift may look like progress to some, such representation doesn't always show the full picture.  

"On the one hand, yes, it is extremely exciting. But on the other hand, there's kind of a specific vision of disability that gets represented in pop culture," smith said. 

According to the Northern California-based writer, disabled people in popular media are often depicted as having more visually noticeable disabilities like wheelchair users or people with visual impairments. 

This means that many people are left out of the conversation, particularly those with less obvious disabilities.

"A pretty big percentage of disability is actually what some people call invisible or non-evident disability," they said. "Where you see someone sitting on a seat on the train who looks just like a non-disabled person, or you see a popular actress appearing on a daytime talk show, and she looks like a non-disabled person, but maybe she has a mental health condition or maybe she has a congenital illness that is not visible."

This erasure often leaves many people with fixed ideas about what disability "should" look like, and the ways that disabled people should move through the world.

Here's their interview on Tapestry:

Mary Hynes: So the [disabled] people we are seeing are not very representative of a larger community?

s.e. smith: For sure. And [non-evident] disabilities are very poorly represented, as are disabilities that I kind of think of as the ugly beautiful; the disabilities that make people really uncomfortable to look at. The classic one is people with facial differences, who still encounter tremendous stigma out in public because you never see them in pop culture. Or you have people with "disfiguring disabilities" that are very, very evident. And so those people are still hidden away.

MH: You've identified this kind of pressure for people to hide their disabilities and to present themselves as close to being able-bodied as they can. What does that pressure look like from where you are?

SS: Well, it can look like a lot of different things. Certainly, when it comes to beauty standards, the beauty standard is non-disabled, right? It's someone who is symmetrical, who has all of their limbs, who moves in ways that are "normal" - someone who can walk and run and swim, someone who can speak and hear and see. 

You don't want people staring at you and turning you into the disability that they're seeing instead of engaging with you as a human.- s.e. smith

And so for a lot of disabled people who either have non-evident disabilities or can pass, there's a lot of pressure to look like that. Maybe it's [that] you don't use your cane, even though it's actually a really high pain day, because you just want to walk through downtown San Francisco and not be stared at. Or, maybe it's you wear a scleral shell on your eye, so that it's not obvious that you have a severe cataract. Or it's choosing not to use a wheelchair — even though you actually would be more comfortable in one — because you don't want people staring at you and turning you into the disability that they're seeing instead of engaging with you as a human.

MH: I want to ask about something you wrote recently. "Non-disabled people often seem to believe that bodies like theirs are the pinnacle of accomplishment, and that the work of finding beauty is about finding ways to compare ourselves to them." Tell me what you mean there.

SS: There's this tremendous pressure to look non-disabled because the assumption that being disabled is bad. Why would you want to look disabled or why would you if you have limb loss? Why would you not want to replace a missing limb with one that looks and works just like a quote unquote regular limb? 

 So we get this pressure in the doctor's office. [Like] if you get fitted for a prosthesis, they're going to give you a flesh tone, very boring, lifelike hand or leg. You see it in the way that purveyors of medical equipment interact with the disability community, [so] there's a lot of "This very discreet and no one will notice" with something like an ostomy bag. And the assumption there is that being disabled is something to be ashamed of and have something to hide and so all the products marketed to our community are designed to hide our disabilities as much as possible.

MH: How much of that is in the service of you, the person who's going to be using this? And how much is in the service of making onlookers comfortable and never making an onlooker ill at ease or uncomfortable?

SS: That is definitely a big factor. There's a lot of desire to make disabled people sort of fade away into the background. And that's like, well, we are human beings. We don't need to camouflage ourselves. You know, I'm sorry that you're non-disabled and you feel uncomfortable about that, but that is really not my responsibility.

MH: Was there a time when you were confronted by that message that you should aspire to have a face a body that's different than it is?

S.S.: Once I started using a cane full time, it was very interesting to see the way that people interact with me and how That has shifted, because there was a lot of "Well you weren't using a cane last year" or "Well sometimes I see you don't use it around the house, do you really need to take it with us?"

MH: What impulse is at work there, when someone would have you leave the cane at home? What's going on there?

Non-disabled people very much feel like everything about our bodies is their business.- s.e. smith

SS.: Non-disabled people tend to exert a lot of ownership over disabled bodies in a lot of very different ways culturally. And part of that is because for a very long time, we were institutionalised if we could not conform with non-disabled ideals of how brains and bodies functioned. And some of that is also a situation [where] disabled bodies are a constant topic of conversation. [So] if you are out in public and you are visibly disabled, children are going to point and stare at you. Or just this morning, I was talking to a colleague who's a little person who was dropping her children off at school and she said one of the parents started snapping pictures of us as we were crossing the street. And does that parent do that to every parent who's dropping off their kids? I'm betting not. So, non-disabled people very much feel like everything about our bodies is their business, whether they are asking us what medical treatments we're getting or not getting.

MH: I want to quote you here. "We want to carry sparkly canes to sew custom pouches for our medical supplies, to wear crop tops with our ostomy bag showing, to show our facial differences." Can you tell me a little bit more about that impulse to do the exact opposite of hiding or passing?

SS: So, a big part of that is rooted in the Disability Pride movement, which is not just that disability is a value-neutral thing that can happen to anyone, and has all sorts of ramifications. But more specifically, that disability is part of our identity and we are proud of that. And we are delighted to live in a world where we can be alive. Fifty years ago, people like me would be dead. I think that's pretty bad. And that's pretty cool that [this is] not the case anymore. So these really defiantly aggressive, in-your-face depictions of disability are really critically important for ourselves and our sense of pride in our community.

MH: You've written quite a bit about finding beauty in the so called "ugly." And I want to ask you more about that. I'm interested in what draws you to things that many people would typically describe as not beautiful, not attractive. What's the attraction there for you?

SS: Well, it's great that you note that "ugly" is subjective because it really, really is. But this is the sort of thing that I think about; who gets to define beauty and who gets to decide that something is or isn't beautiful. And what about people who actually aren't interested in being beautiful? Because often beauty comes with a sense of conformity. And maybe people just want to be ugly and rock out with their bad selves, whatever they might look like. And so then it kind of becomes a question of whether ugliness is something that is put upon you, or something you want to claim for yourself. 

MH: Well how big an act of rebellion is that to say: "take your beauty and take it away. I'm not even interested and I'm I am ugly and I rock it." How rebellious is that in the year 2020?

We built these movements for people that society said was ugly.- s.e. smith

SS: I think that a lot of movements around body positivity and reclaiming bodies — and making space for different people who live in different types of worlds — have really been co-opted to the point that I [may] see a conventionally attractive white lady on Instagram talking about body positivity. And I'm just like, no, that's not what this is. And so part of the rebellion almost is reclaiming this and saying, "No, we built these movements for people that society said was ugly. And for people who society said, don't belong."

And in the case of the disability community, sometimes very explicitly, we hear "I'd rather be dead," or you know, "I can't believe your parents didn't get an abortion." And so for us, it is a really intense act of defiance and an assertion to the right to stay alive and to live in society. And so it is really important to separate this from the watered down body positivity that has been floating through the ethers for the last couple of years. Because there is a significant difference between "Oh, I'm an attractive, nice looking person who is wearing a crop top onstage" versus, "I am a 500-pound power wheelchair user who uses a ventilator." That's a very different thing. And one of those things, people are pretty comfortable seeing on national TV, and the other one not so much.

MH: What role does community play in kicking standards of beauty to the curb among disabled people?

S.S: So for one thing, a lot of disabled people have never actually been in a space that is just filled with disabled people. It is a huge and momentous moment. Most of us can remember the first time it happened to us, of being just completely surrounded by people like us who understand our experiences.So, I think a big part of finding your people, and a big part of what your people do for you, is creating a space where you have space to breathe. And just be yourself, and just be in your body and [don't] stress out about performing for non-disabled people, or making sure people don't feel uncomfortable around you.