“This Is What Disabled Looks Like”: The Sometimes Hard-To-See Line Between Visible and Invisible Disabilities

coffeespoonie
Jul 29 · 11 min read

There are disabilities we think of as visible, and disabilities we think of as invisible. (Mental illness? Invisible. Quadriplegia? Visible. Autoimmune disease? Invisible. Blindness, with a cane and guide dog? Visible.) Neat little categories that we are expected to sort our disabilities into, to help others understand better when we explain our experience.

The false dichotomy between visible and invisible disabilities ultimately goes back to an ableist society’s narrow, contrived image of Disabled™. So many of us in the chronic illness and disability communities are painfully familiar with the phrase “you don’t look sick” or “you don’t look disabled.” There are many reasons why this is a thoughtless, obnoxious, senseless thing to say — but not the least of which of these reasons is that the idea of “looking sick” or “looking disabled” itself is fatphobic, ableist, racist, and completely, totally, and utterly baseless.

Disability and illness are infinitely diverse, and therefore so are the ways that they present. Yet the image of a typical Sick Person is someone who society thinks of as checking all the boxes for fundamentally frail: often pale white, and often petite and skinny. The reality, friend, is that the diversity of disability goes so far beyond the popular representations of it, and often doesn’t fit in with one’s contrived idea of what they think disabled looks like (or doesn’t look like).

I have what’s often considered as an invisible disability: a disability that is not necessarily immediately visible, that nonetheless impacts my ability to move and perform what are known as ADLs (“Activities of Daily Living”). Just by looking at me, you might not be able to tell that I’m disabled.

white girl (me!) sitting on floor looks up at camera, cute dog (dovi!) by her feet.
white girl (me!) sitting on floor looks up at camera, cute dog (dovi!) by her feet.
Me, sitting on the floor with my dog.

I also have what is often considered a visible disability. Because sometimes I use a wheelchair, and sometimes the wheelchair kind of gives it away.

Drawing of a white girl (me!) with long brown hair and glasses and gloves in a wheelchair holding a beautiful dog (Dovi Ber).
Drawing of a white girl (me!) with long brown hair and glasses and gloves in a wheelchair holding a beautiful dog (Dovi Ber).
Image of me done by my friend Charlie; formerly @MulhollandDyke on twitter, based off of a portrait series done by my friend Ariel, @Harsh__Babe on twitter.
Tweet with pictures of me in my old wheelchair.

The visibility depends, really, on an innumerable amount of factors. Some visual cues of disability are more immediately obvious to people, such as a wheelchair, visible prosthetic, cane, or service dog. My service dog especially has introduced a level of hypervisibility into my life that was not there before — a 70-pound dog in a red vest that has big letters reading “IN TRAINING” isn’t exactly inconspicuous.

My not-so-inconspicuous puppy at work last week, laying by my wheel in his red harness vest.

Because of this hypervisibility, people often feel entitled to ask me directly about my disability and illness. (While he draws a lot of attention, my service dog also draws a lot of attention onto him and away from me, for which I am incredibly grateful.) But other visual cues can be based on variables that include, but are not limited to: the lighting, the day, the time of day, the weather, whether I’m still or moving, how much medical equipment I’m using in that moment, whether or not I have my service dog with me, and, maybe most importantly, the person who is looking at me and making the judgment. Someone’s experience with disability will determine their mental image of disability, and how much of it they know how to “see.” The problem is that so many nondisabled people have limited exposure to disabled people, and therefore have limited ideas of what disabled can “look like,” and therefore do depend so heavily on signifiers like a wheelchair or cane. (And, not for nothing — oftentimes, you don’t see us because we can’t get into the damn building.)

Advocacy for awareness around invisible illnesses/invisible disabilities has increased tons in recent years, which is great. There are initiatives that include reminders everywhere from the accessible restroom to priority seating on public transportation that not all disabilities are visible.

“Not every disability is visible”. white stick figure with pale blue wheelchair symbol shadow; blue background.
“Not every disability is visible”. white stick figure with pale blue wheelchair symbol shadow; blue background.
“Not every disability is visible”. An example of a graphic for one of the campaigns to increase awareness around “invisible” disabilities.

Stories have gone viral of people who’ve dealt with harassment for using disabled parking spaces and been confronted by the “Disability Police,” as Disabled Twitter often calls them (individuals who devote time to policing who “looks disabled” and takes it upon themselves to punish people who have disability accommodations who don’t “Look Disabled” enough for the Disability Police’s liking — but I’ll come back to this later). All of these initiatives and stories have been a wonderful push against the image of disability that the average nondisabled person might think of, which is often a white, thin wheelchair user with an acquired static disability.

One thing that gets lost in this messaging, however, is that disability (in)visibility is not a binary. It’s not necessarily always Visible or Invisible. Some people’s disabilities are almost always considered invisible; this is particularly true for many people with chronic illnesses and mental illness. Those who have medical devices such as insulin pumps or ostomy bags may consider themselves to have an invisible illness despite having a (semi-)permanent attachment on their body that would be visible any time they were in a standard swimsuit. Things that some people might pick up on, beyond a mobility device or service dog: bags under my eyes, pallor, fingernail ridges, small patches of psoriasis, visible swelling of joints, a peculiar way I hold my wrist or lean against a wall for stability. These are all things that someone could notice, but could just as easily not notice, or would not know to attribute to illness. They’re still technically visible signs. So where exactly is the line between visible and invisible disabilities?

Two side-by-side pictures of model Jearlean Taylor in crop tops with her ostomy bag showing.
Two side-by-side pictures of model Jearlean Taylor in crop tops with her ostomy bag showing.
Model Jearlean Taylor poses with her ostomy bag. (Source: Inside Edition)

This false binary depends on the idea that disability is static and unchanging. That’s just not my experience of disability. I have days when I can walk and kick a ball around for my dog, and I have days when I can’t even stand. These categories of (in)visibilities, and the attempt to sort all disabilities into one or the other, are just completely incongruent with my experience of disability. When I walk, I move with a limp; does that count as “visible”? If I’m seated in my wheelchair, does that suddenly categorically change my disability from invisible to visible? And if I stand up from my wheelchair, it suddenly changes again? What if I have my service dog with me, but I’m walking? What if he’s with me, but he’s not in his vest? These questions seem silly, maybe, but I’m trying to drive home the point that the idea of a solid line between visible and invisible disabilities is confusing to me, as someone whose experience does not match up neatly with either category. I struggle to understand the false binary of visible and invisible disabilities, as it goes back to the fundamental idea of “what Disabled looks like.” In my opinion, some of this push has inadvertently contributed to the construction of a false binary between visible and invisible disabilities, and therefore to a contrived image of “visible” disabilities.

Another problem with trying to discern what constitutes visible and invisible illness is because it ultimately tries to determine what sick “looks like.” It tries to create “looking sick” as an objective, rather than subjective, matter. But the viewer making the judgment is human, and therefore cannot be wholly objective. For example, a study has found what Black patients have long known from experience — actors of the medical establishment consistently underestimate and under-treat the pain of their Black patients. There are also negative stereotypes about Jews as neurotic hypochondriacs (not helped by the representation of Jews in media — thanks, Woody, you disgusting fuck!). Also a component of white supremacy, white women are often coded as being weak and pitiable, and often depictions of people with acute or terminal illnesses who aren’t white men are white children or white women characters. The google image results page for “cancer patient” depicts almost exclusively white women.

Google image results for “cancer patient”. It almost exclusively shows a homogenous image of thin white women.

There’s very limited representation of disabled people on screen. Stories of acquired disabilities get told more often than congenital ones, disfigurement is often codified as evil/Other, and disability characters are often reduced to inspiration objectification plots written by and for ableds, and told through an abled lens. When there are disabled characters, they’re usually white, wealthy, male, and almost always played by non-disabled actors. Which means in the disabled representation we do get, we don’t actually get to see disabled bodies, which means we don’t get to see the incredible diversity of disabled people.

A scene from Me Before You. A white man in an electric wheelchair talks to a white woman standing in front of him.
A scene from Me Before You. A white man in an electric wheelchair talks to a white woman standing in front of him.
Me Before You, one of the more ableist films depicting an abled actor cripping up to play a wealthy, white, cis, het man.

So what does all of this mean for us when we talk about how we as a society conceptualize the image of someone who “looks sick”? What does this mean when we talk about “visible” and “invisible” disabilities? Visible to whom?

Another aspect of “looking disabled” that I want to talk about is performativity and compulsory ablebodiedness. Disabled people are often forced to perform for the comfort of an ableist society that considers disability negative and bad. I find myself excruciatingly aware of my limp and my awkward movements when I have to walk in front of people; which makes me want to hide them as much as possible. I’ll try to walk in a way that appears more normal even if it causes me significantly more pain or discomfort, or costs me more energy. And it does cost a lot of energy to perform ablebodiedness. It’s exhausting. And yet, I still prefer to do this (literally) painful dance rather than simply use a mobility device, because it’s much harder to hide a wheelchair than it is to hide a limp. And it’s not for our comfort, but for the comfort of nondisabled people around us (and sometimes even disabled people, who can project lateral ableism), who may subconsciously view disability and mobility devices as negative and shameful.

Part of the way this idea of shame is perpetuated (and why it’s perpetuated) is that disability is often hidden from the public eye. Disabled people are often segregated (for example, being taught in separate classrooms and schools and being institutionalized). Disabled people often go to great lengths to hide their disability and to “blend in,” and to perform abledness for fear of being identified and labeled as disabled; for fear of the stigma that goes along with it. It goes back to the core fundamental ableist idea of disabledness being Less Than, and that it must be hidden, and that people must conform to an ableist society and perform ablebodiedness. As many people with chronic pain can tell you, part of this performance is a sort of emotional labor: a “mask” that we put on to not look like we are in pain, even when we are, that takes energy and labor to maintain.

On the other side of the same coin, we have people who cannot hide their (in)visible-ish disabilities enough to adequately perform ablebodiedness, and sometimes feel pressured to perform Disability™ the way society sees it. Those who do not wish to face harassment for their (in)visible-ish disabilities by the Disability Police may exaggerate the visible aspects of their disability for the benefit of the nondisabled viewer who may be watching and judging. There have been instances when images have gone viral of someone with a white cane holding a phone in front of their face, insinuating that blind folks 1) experience total vision loss 2) do not and cannot use cell phones. I’ve heard from folks who’ve exaggerated their limps when walking without a mobility device in order to keep from being harassed when using a disabled parking placard. This, too, is a kind of forced performance to fit a narrow image of disability, put on for non-disabled folks’ sake.

The Disability Police are a great source of anxiety for many individuals with less immediately apparent disabilities, and even for those with disabilities that are more immediately apparent (as indicated by an accessibility device, for example). By nature of being people who are Disability Police, these are the same people who buy into these contrived images of disability that we are taught in society. I remember watching TV shows like Psych and Monk and many others, and seeing “gotcha!” moments wherein they prove a disabled character is not “really” disabled by getting the person to stand or admit they have some base level of vision. I’ve had pictures of me circled around on Reddit boards, with people declaring I can’t possibly be disabled because my shoes are scuffed or my legs aren’t properly atrophied for their liking or whatever it may be. We see disability portrayed in absolutes. Society in general simply doesn’t see disability as the diverse thing that it is, and it doesn’t see disabled people as the diverse group that we are.

An image of silhouettes of various disabled people with different mobility devices etc.
An image of silhouettes of various disabled people with different mobility devices etc.
(Source: PiedmontRoar.com.)

So what does all of this mean for us when we talk about how we as a society conceptualize the image of someone who “looks sick”? What does this mean when we talk about “visible” and “invisible” disabilities? Visible to whom? When we talk about what disabled “looks like,”, are we taking that into account? All of that? Everything from the pressure to hide a limp or speech impediment to the variability of disability? Are we considering make-up that we put on to cover discoloration, wigs put on to cover lost hair? Are we considering everyone under the big wide umbrella of the term “disabled”? Are we only thinking of the mainstream representations we’ve had of illness and disability? Are we thinking of ambulatory wheelchair users? Are we thinking of all of this, all at once? I don’t think we possibly can. Disabled looks like so many things.

Models like Jillian Mercado and Aaron Philip are bringing disability into mainstream fashion and challenging society’s idea of what disabled “Looks Like” by rocking high-fashion looks and photoshoots; shows like Special, that feature a main character with CP (written and played by Ryan O’Connell, someone with CP) and actors like Sean Berdy, provide more visibility on the screen; celebrities like Selma Blair and Jameela Jamil are talking about their disabilities and diagnoses, and images of diversely disabled people of all kinds are becoming more common everywhere. YouTubers like Jessica Kellgren-Fozard and Annie Segarra and Chella Man also show up for disability rep; and Annie themselves has raised awareness for ambulatory wheelchair users with their work including a viral hashtag #AmbulatoryWheelchairUsersExist.

All of this is what we need. More images and awareness of disabled folks — of all different disabilities and identities — is the best way to combat society’s contrived narrow image of what disabled looks like. Normalizing us, our medical devices, our bodies, our disfigurements, our movement — no matter how “visible” or “invisible” our disabledness may be to someone — is the best way to show society what disabled “looks like.” That regardless of if I’m sitting, standing, walking, dancing, wheeling, laying down; regardless of if I have on makeup, or if I’m barefaced with dark bags under my eyes; no matter how fat I am; no matter what mobility devices I do or don’t have with me; no matter what I look like: that is what disabled looks like. Because no matter what someone else thinks disabled “looks like,” it doesn’t change my reality of being disabled, and needing accessibility and medical care.

And maybe one day society will learn that all of us disabled folk, regardless of how visible or invisible someone may think our disability is— we are all what disabled “looks like.”

This is what disabled looks like.

coffeespoonie

Written by

zipporah arielle. i write things.

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