The Oxford English Dictionary definition also leaves little room for one vital piece of the story: disability is shaped just as much, if not more, by context than by the body. For example, before spectacles were invented, our population included a much greater number of people categorized as blind. Technology has changed the experience of so many bodies, and as eyeglasses have become integrated into our fashion industry, the stigma around vision that deviates from the “ideal” 20/20 has shifted. (In fact, I’ve owned a decent number of fake eyeglasses in my day. It’s a real thing.) We don’t tend to equate a person wearing glasses with “disability,” even if that same person would have been considered disabled in another time and place.
And finally, people are often shifting in and out of a “disabled” state; they break a limb or get the flu or have horrible period cramps or become pregnant or (gasp!) age, and suddenly they find themselves experiencing disabling limitations. If we live long enough, all of us, without exception, will become disabled. This is a prerequisite to having, living in, being a body. The idea that some of us are firmly fixed in the “able-bodied” category is a fiction. A world built on speed, productivity, more, more, more! and far too few bathrooms (and bathroom breaks) does not consider or care for the actual bodies we live in. In other words, ableism affects all of us, whether we consider ourselves disabled or not. Because the disabled body is most powerfully affected by ableism, it is the first to cast a light on the structure, to resist and protest it, to call for its public execution, but we’re all living under its dictates. Ableism punishes all of us.
In its most boiled-down, squished together, simplified form, ableism is the process of favoring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look, or need differently from that vision. Often, the greater the deviation, the greater the discrimination. In other words, ableism is one possible answer for a young girl seeing herself as valuable as a princess one week and deflating into shame and self-loathing the next. (Thanks for all you do, Oxford English Dictionary, but my definition is better.)
Without using the “ableism” word, I tried to communicate some of this to David. He was nodding along, but I could still feel the chasm between what I know in my blood and my bones and what I’m able to hand him. It’s like we grew up right next to the roar of Niagara Falls, but at some point I moved to a cabin in the quiet woods, and now I’m back home, yelling over the noise, trying to explain how overwhelming it is, but David can hardly hear me or the waterfall. What words could I gather to make David feel the rumble surrounding us?
Ableism thunders in the background of every conversation, every story, every building. It’s the atmosphere we breathe, a body of principles, rules we live by. We learn its tenets like we learn about good and evil: with subtle and consistent reinforcement. Not only do we avoid questioning them, it doesn’t even occur to us that there’s anything to question. Ableism pushes assumptions like: Some bodies/minds/modes are inherently and always preferable to others. Hearing/speaking is always better than deafness/signing. Bipeds walking is definitively preferable to paraplegics wheeling. Each of us has a “whole,” “unmarred,” “perfect” body that we were meant to have; the paralyzed, autistic, deaf version is just a sadder, lesser version of that original intent. (This tenet is wrapped up in narratives of fat, aging, gender-nonconforming bodies, too, of course.) The worth of a body is measured by its capacity for work and/or the longevity of life it’s able to sustain. Bodies are products; scars, breaks, and changes in function make that product less valuable. Dependence is inferior to independence. Only some bodies require help, and those bodies are a burden. It’s only practical to shape the world with the “majority” in mind (and there is such a thing as a majority). Disability is always, only a deficit; the world would be a better place if we could figure out a way to eliminate it entirely. And on and on and on . . .
If you find yourself nodding along with any of these ableist beliefs, that makes sense. They’ve been a part of our daily diets since infancy. They’ve made us terrified of aging, wrinkles, belly fat, age spots, sagging skin, and stretch marks. They’ve turned us into work machines who regularly abuse our bodies to demonstrate our value—sleep less, work harder, always! They’ve made us ashamed to ask for help, to take medication, to use mobility aids. They stifle our capacity to imagine other ways of being in the world. In order to be okay, we must always strive to be the ideal human: young, smooth, tight, fit, radiant, spry, boundless, unstoppable, independent. Because if we start to spill out of this tiny little mold, what will it mean? Who will we be?
It takes hard work and intention to undo these ideologies. They’re loud, insistent, and reinforced at every turn. In fact, the concept of ableism is so deeply entwined with our culture, and, by extension, the wiring of my own self-perception, that sometimes it can be difficult for me to name. I can bend to its insistence just as much as anyone else. Just yesterday I whined to my co-worker about my aging face. “I don’t even want to look in the mirror!” I said, covering my face with my hands and making a charming bleh sound. Yeah, I’m not the picture of post-ableism enlightenment you’ve been looking for.
Pinpointing the elements that make up an atmosphere of ableism can feel distant and abstract, like knowing the elements that make up oxygen versus knowing what it feels like to breathe in and out. How do I take you through the inhales and exhales?—the way it feels when it’s not just a formula in a textbook but an experience that shapes your every day?
Ableism constricts whenever I look for affordable, accessible homes in Kansas City (are there really only three?) or try to navigate the puzzling world of Medicaid in an attempt to keep living. I feel ableism straining my body under the rigidity of inflexible work systems that do not make space for, understand, care for, or believe bodies in pain. I feel the confines of ableism whenever I take the three steps from the driver’s seat to the gas pump and forget to breathe in my concentration to make those three steps look as normal and steady as possible, even though it’s much easier for me to drag my feet and swing my hips across the same distance. Ableism recommends I put myself through pain and expend extra energy to make sure those strangers walking out of 7-Eleven with a Slurpee don’t stare at me, pity me, mock me for the way I move my body.
I wanted David to feel this with me. How do I upload a life of memories, a dictionary of definitions, a planet of feelings? How many times would he need to see people avert their gaze, pull their children back, or fall over themselves to dive fifteen feet out of my way or frantically scramble to open a door lest I attempt to open it myself before he’d know what it means to be both invisible and in the spotlight? At what point would the staring start to make him feel unsteady? How can I take him with me through every grocery store where half of the items tower above my head, every obstacle course sidewalk, each maze between me and the ramp at the back of the building next to the garbage dump, every bar and bank and café with counters so high they erase me from the room, every restaurant and airplane where the toilet is entirely inaccessible to me? Would these field trips illuminate why I started to believe I didn’t belong, wasn’t welcome, didn’t have an invitation to be here? Would it solve the puzzle of a smart, competent girl becoming convinced that she’d never be able to join a workforce that exists on this planet? What hour could he live with me that would give him a glimpse of the power health insurance has over my life?
I ask these questions, not just for David or because I want to understand myself, but because I know I am not the only one who has been relegated to the outside, assigned to the seats designated for Others. So many of us grew up (and continue to exist) under crushing systems—racism, sexism, ageism, classism, homophobia, size discrimination. These structures are like factories pumping out blueprints, designs, infrastructures, tools, and stories that shape our world. They have been running for so long, shaping our cultural history and current landscape, that
a lot of us don’t even notice the billows of smoke jetting out of their industrial-sized stacks. They are fueled by the worth and power stolen from whole communities. They distort our sense of self, keep us quiet, and make us feel both small and like we’re an enormous problem, both invisible and put on display, both a spectacle and swept under the rug.
This act of thievery can be loud and violent, or quiet and sneaky. There are ways these oppressive systems overlap, feed off each other, mirror one another, and there are also ways they remain uniquely distinct. As a white, cis-gendered, straight woman who grew up in a middle-class family, I won’t pretend to understand most of these structures intimately. Even in my disabled body, I carry a world of privilege. From where I sit and what I can see, though, shame seems to be a bestselling product pumped out of all of these crushing systems.
So how do we open the eyes of someone already on the inside to what’s happening on the outside? Can we trace the ripples well enough to name the larger patterns? As much as numbers put me to sleep, sometimes they capture the scope of the problem in a way a string of observations can’t. So here’s some data on the United States gathered by Cornell University in 2017: At the time of the study, a person was well over twice as likely to live below the poverty line if they had a disability. The average annual income for a disabled person was $25,400 less than for a nondisabled person. About 80 percent of nondisabled people were employed, compared with 36 percent of disabled people. We could pull many different insights out of these numbers, but one thing is clear: there’s a gaping, fundamental disparity between the choices granted to disabled and nondisabled folks.
Then again, numbers catch only so much. Ableism can be hard to hold on to or pinpoint, because it morphs. It lives in distinctly personal stories. It takes on ten thousand shifting faces, and for the world we live in today, it’s usually more subtle than overt cruelty. Some examples to start the sketch: the assumption that all people who are deaf would prefer to be hearing—the belief that walking down the aisle at a wedding is obviously preferable to moving down that aisle in a wheelchair—the conviction that listening to an audiobook is automatically inferior to the experience of reading a book with your eyes—the expectation that a nondisabled person who chooses a partner with a disability is necessarily brave, strong, and especially good—the belief that someone who receives a disability check contributes less to our society than the full-time worker—the movie that features a disabled person whose greatest battle is their own body and ultimately teaches the nondisabled protagonist (and audience) how to value their own beautiful life. All of these are different flashes of the same, oppressive structure. Ableism separates, isolates, assumes. It’s starved for imagination, creativity, and curiosity. It’s fueled by fear. It oppresses. All of us.
When I was small and just learning how to do life in my body, I didn’t hesitate, didn’t hold back, didn’t worry how it would look, didn’t look for cues or ask for a line. My imagination ruled. I saw no incongruities in being both a puppy rolling around in the mud and a poised princess. I wore dress-up gowns on afternoon trips to the library and drew magic-marker purple diamonds across my forearms and shins. I didn’t wonder what dancing could or should be; I moved my body to music and called it dancing. I used the shelves and cabinets in the kitchen to climb onto the counter, and crawled headfirst down the hardwood stairs at top speed. I scooted around the neighborhood on a red tricycle with streamers flowing out of the handlebars. I was entirely free to be, driven by the innovation my body inspired. This is the wild emancipation I wish for all of us—a world where we are all free to be, to move, to exist in our bodies without shame; a world that isn’t interested in making all of its humans operate in the exact same way; a world that instead strives to invite more, include more, imagine more. That world sees the humans existing on the margins and says, You have what we want! What barriers can we remove so we can have you around? What do you need? How can we make that happen?
“When you grow up in a world that doesn’t see you or welcome you or include you or represent you, you believe the world isn’t for you,” I finally told David. “It’s for all the other people.” The ones being seen, welcomed, included, represented. This is why I want to unbury the stories, to bring them into the light, to let them breathe in the open air. Because our stories matter. Not only are we a part of this, but we’re a vital missing piece.
Thank you for asking, David—and anyone who’s reading this book. Even more, thank you for doing your best to listen, even when my words feel unfamiliar or uncomfortable. Here’s to building new narrative pathways through our brains, our spaces, our stories. Here’s to dismantling ableism, building a bonfire from its pieces, and toasting marshmallows over the flames.
2
An Ordinary Unimaginable Love Story
I got lost in a Reddit thread recently. As one does. The conversation started with one woman’s question for the men of the community: Would you date a woman who is in a wheelchair? She wondered because, after eighteen years of using a wheelchair herself, she’d never been in a romantic relationship or on a date. She went on to explain her solid credentials: good sense of humor, sharp and bright, “not ugly.” Despite such a winning personality, she suspected her romantic status was a direct result of her disability. She wanted insight from the insiders: How do I make guys more comfortable with me? How can I be seen as a regular person?
This woman’s question generated 415 comments. As you might imagine, the conversation that ensued is a treasure trove of gems. It includes a collection of cringy wheelchair jokes (if a guy isn’t interested, just run over him with your chair!), overt and cloaked ableism (we assume disabled people are nonsexual until told otherwise, so if you want to connect with a guy, you’re going to have to learn to tell dirty jokes so we know you’re a sexual being), many, many, many questions about sex (no, but REALLY, can you have sex?), blanket oversimplifications (I don’t see disability!), and a few earnest attempts to unpack a gut aversion to dating someone in a wheelchair. The most common anxieties, however, were clear: Will I have to become a caregiver? and WHAT. ABOUT. SEX? Some of my favorite concerns: I worry that she’d make me feel guilty when I go hiking; I don’t think I could date a woman in a wheelchair because of all the extra planning it would take to go to the movies; it wouldn’t work out, because I have a spiral staircase in my house; I hit on a girl in a wheelchair at a bar one time, and she was nasty to me, so . . .
In the midst of this male-dominated conversation, the single woman who started it all chimed in. I’m pretty sure she replied to each and every comment on this thread, and every time, no matter how ignorant or crass or nonsensical they were, she wrote a thoughtful, charming, diplomatic response. She gave an LOL for their cliché jokes, she soothed their guilt when they confessed their most shallow impulses, she affirmed their gut aversions as normal and understandable. She presented herself as endlessly open-minded, willing to listen, eager to try out their recommendations. She remained flexible, self-assured, playful. I could almost hear her voice—light and warm, putting everyone in the room at ease.
The eeriest bit for me was how much I heard my own voice in her words. The familiarity of relentlessly prioritizing everyone else’s comfort over my own took my breath away.
Through her untiring, soothing charm, I started to see it: we’re circus performers, riding bikes across tightropes, juggling oranges while singing opera, and we make it look natural, easy. The impossible, relentless task of making other people feel comfortable with our disabilities—of helping them see us as human without making them feel threatened or shamed—is stunningly familiar. The elaborate dance moves required to be accepted by the gang, to get an invitation to the party, to be chosen for the team—the woman on the Reddit thread was an absolute master. The social superpowers she wielded in this conversation reminded me of so many disabled people I know.
Disabled people are expected to cope with their own social ostracism, to handle being misunderstood and misrepresented, and
at the same time to put at ease those who perform the ostracism. In order to be seen as equally human, we have to find a way to be seen on the fringes by those already firmly situated on the inside, to make those who would otherwise ignore and erase or misread us feel comfy and cozy and entertained while we attempt to delicately challenge their assumptions.
This dynamic is only heightened when it comes to dating. The task of connecting with another person is layers deep for any human being. But when you add disability into the mix? How do I persuade you I’m human like you? But also, how do I get you to feel comfortable with the ways that I’m different? How do I show you, while maintaining unwavering class, that I am a sexual being? How do I hold all of my own anxieties while also managing yours? How do I flip your ignorance into a joke that educates, entertains, and doesn’t make you feel threatened? Meanwhile, for plenty of disabled folks, the stakes couldn’t feel higher. For so many, this is the battlefield that rests between here and finding love, partnership, family, a life they want.
Sitting Pretty Page 2