Sitting Pretty: The View from My Ordinary Resilient Disabled Body

by Rebekah Taussig

I played with words like “wheelchair” and “cripple” and “disabled” until I landed on the feminine, the playful, the subtly subversive @sitting_pretty—a name to highlight that I am moving around down here and doing just fine.

disability is shaped just as much, if not more, by context than by the body.

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.

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.)

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.

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 started praying each night on a bright star, then wishing every night at 11:11 for this unfathomable dream to come true. (When willing a miracle into the world, it’s important to cover all your bases.)

I started telling everyone who cared to listen (and some who didn’t) that I didn’t want to get married when I grew up. I proclaimed the business to be a distasteful one. Because, if you decide to become an Old Maid, it’s one hundred times less pathetic than if you’re forced into Old Maidenhood against your will.

As I scrolled through his profile, I felt tiny little lovebirds flapping around my head. First, he knew how to write a sentence, including the proper use of a comma between two independent clauses connected by a conjunction, which was pretty much a seduction dance in my book.

Instead of disability as the limitation, what if a lack of imagination was the actual barrier?

In some ways, I think my disability is the force that disassembled the template to begin with.

It’s so much easier to see the one disabled person and say, She needs a cure so she can fit into our world! It’s much less common, much harder to recognize, We need to change our world to fit more people.

A group is marginalized because society marginalizes them. Society also has the power to change that. What would it mean for disabled folks if society saw us as acceptable, equal, valuable parts of the whole?

(Why so many lists of three and colons, academia?)

“Disability,” I read, “is not an object—a woman with a cane—but a social process that intimately involves everyone who has a body and lives in the world of the senses.” I was stunned. What was he saying? It was as if I’d spent years acting my part in an elaborate stage performance, squinting under a relentless spotlight I hadn’t even known was there, baking under the heat of one steady lamp, unable to see past the edge of my paralyzed legs. Wasn’t this just life? Suddenly, the spotlight moved to my left and I could see the set behind me, the chairs in front of me. What was this feeling? This relief? Disability isn’t just me? Located in my scrawny legs that drag instead of lift? Carried in the scars running down the length of my spine and the edges of my hip bones? Disability is something that expands beyond me? That involves everyone? This was my first experience hearing someone describe the forces that had remained entirely invisible and wildly powerful throughout my life. I’d always sensed people in an audience, other actors on the stage, and an elaborate set, but no one else confirmed they existed, so I’d tried to ignore them. I lapped up his words as he continued, “the object of disability studies is not the person using the wheelchair or the Deaf person but the set of social, historical, economic, and cultural processes that regulate and control the way we think about and think through the body.” The words sent tingles down my face, shoulders, arms, and through my por...

One of the other English teachers I work with says that teachers’ fists are full of seeds, and we spend our days throwing them across the concrete pavement, never knowing when or where one of those seeds will take root or what plant might start pushing its way through the cracks. I haven’t decided whether I find this picture comforting or not.

And in case this isn’t clear, let me emphasize: more is at stake than hurt feelings, irritations, and misunderstandings. Stories written about marginalized people embed themselves in our culture and are used to justify our politics, to arrange our school systems, to determine a hospital’s budget. They enter our private homes, follow us into libraries, classrooms, airports, restaurants, courthouses, swimming pools, doctors’ offices, churches, bars—these skewed, melodramatic narratives shape our cities, our communities, our social interactions. They precede us, follow us, and are almost impossible to shake. When we arrive at job interviews, go to the grocery store, show up at a fertility clinic or adoption agency, create online dating profiles, get pulled over by police, entrust our bodies to medical professionals, pick up our kids from school, enter a place of worship, we are moving through a world where our image is shorthand for something incompetent or unreliable, helpless or dangerous, not worth living or inherently wrong, sinful or contagious, impotent or taboo, perverted or sexless. And these manifest into tangible results from neglect to hate crimes, condescending laughter to sexual assault, unwelcome prayers to exorcisms, pity to assisted suicides, infantilization to police violence, dismissal to invasive medical procedures, familial rejection to domestic violence, idolization to social isolation. I get it—movies are entertainment. But these stories connect to thous...

Maybe the state of your body isn’t actually the ticket to happiness. Maybe when someone’s difference scares you, that’s the precise moment to lean in, shut up, and listen.

Maybe there aren’t happy endings, maybe life is more like a bowl of soup flavored with contentment and angst, victories and heartbreaks, joys and defeats, rage and peace, and maybe it’s a special thing when you get to share that soup with anyone.

We don’t want to include disabled perspectives just because it’s nice or fair to the “handicapped” people. We want to weave these stories into the collection, we want to consider disabled folks as worthy of their own, ordinary storylines, because without them, we are less robust, less flexible, and less equipped for the ride we’re already on. So, yes, representation is nothing short of everything.

I saw my dad going out of his way to save seventeen cents on milk, even as I sat in a wheelchair that cost more than his car.

More of us than we’d like to believe live one emergency room visit away from bankruptcy or avoid getting that lump checked because it’s probably nothing and who can afford to pay just to be safe? There are those who will be paying off medical bills into old age from the motorcycle accident they had in their early twenties or the open-heart surgery performed on their newborn baby. In case you can’t quite tell where I stand on this issue: this is some bullshit. The single most universal trait we all share is having a body, and all of us, no matter what, are susceptible to the frailties of that body. All bodies age, weaken under the power of germs, viruses, diseases, pain, and injury, require intervention and maintenance, rebel and go rogue. All of our bodies are at risk (some much more than others), and there could not be more at stake. This is inescapably true—and yet. Not all of our bodies have the same access to care, and let’s be clear: all of our bodies deserve care.

in order to have health insurance, a lot of disabled people are forced to choose between hovering near the poverty line or trying to find and survive a full-time job that accommodates their bodies and includes health benefits—a unicorn within the disabled community, where fewer than one in four people is employed full-time. With this setup, the relentless need for good health insurance can shape major life decisions for those who live in bodies that require regular medical care.

I don’t want some misogynist using it as justification for future catcalls. (Not that I imagine a large population of misogynists will ever pick up this book, let alone make it to this chapter. But still! Imagine the one! Dear sole misogynist reading this book: you do not have permission to use my secret memory as justification for hollering at anyone in the street.)

Nuance is harder to rally around or shout from a megaphone, but it’s also sturdier and more sustainable.

I’m fine—I promise! Can you see how fast I’m moving? Can you tell how many times I’ve done this? Can you see how capable I am? And then I hear him. Such a simple, casual sentence. “Looks like you’ve got this,” he says. I look up. “Yes!” I say. “I really do.”

Like anyone else, disabled people are both capable and in need of some help. Just like every other human, their competence and needs are unique.

When I say “included,” I don’t mean just the dressing room designated as the “accessible” space or the handful of first-floor apartments across an entire city designated as the “accessible” units. Access is more than the moment one disabled body bumps into one accommodating object. Access is a way of life, a relationship between you and the world around you; it’s a posture, a belief about your role in your community, about the value of your presence. There’s a fundamental difference between the experience of the person who wakes up taking for granted that they will, of course, have access, and the one who wakes up and wonders whether they’ll have access, how they’ll find or fight for their access, what they’ll do when they don’t have access.

Since I can’t stand up for a shower very well, I reconfigured the space, hanging plants with hearty green leaves and winding vines along the shower curtain rod above the tub. Even today, I stare up at the vines curling above me during a soak and feel like I’m in a jungle. Home! The place where I feel inspired, free to create and dance and make messes and simply be—the place that swaddles me in stories and vibrant life.

Because inaccessibility over time equals . . . what, exactly? It’s more than a string of inconveniences. It’s more powerful than a missing ramp here and an elevator there. (Although, good lord, I am grateful for every ramp and elevator I see. Always.) My experience of inaccessibility is cumulative. It’s more than a line of targets to knock down. It’s a way of being in the world, or just outside of the world. It’s a blaring message on a loudspeaker to tune out. An ideology to survive.

In this future, we will not be encouraged to silence our bodies. Instead of rejecting and abusing our bodies to fit into the boxes, our boxes will be bigger and malleable. This future doesn’t only recognize but honors the fact that our bodies grow and tire and rebel and tremble and fight and change and scar and defy categorization. This future won’t appear out of thin air; we have to create it—little by little—as we practice listening to, caring for, and respecting all of our bodies. Please. Let’s create this world for each other.