Sitting Pretty: The View from My Ordinary Resilient Disabled Body

by Rebekah Taussig

This is the shame that attaches so easily to a body that doesn’t fit, the shame that buds, blossoms, and consumes when you believe that your existence is a burden, a blemish on the well-oiled machine of Society.

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. This is a prerequisite to having, living in, being a body.

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.

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;

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?

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 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?

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

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.

If we’ve never seen it, is it even possible?

If I haven’t seen it, is it even possible? Of course it is. You have the power to create, to imagine, to build and rebuild. There are so many more stories waiting to be written.

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

When I look back and evaluate the most limiting, painful parts of my life, or even, more specifically, the hardest parts about being disabled, it’s just not my legs. It’s stigma, isolation, erasure, misunderstanding, skepticism, and ubiquitous inaccessibility. And that part—right there—is the social model understanding of what it’s like to live in an ableist world when you’re disabled.

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 internalized my role early and continued to be reminded of it with consistent reinforcement. With experience and time, I learned that the best I had to offer society was to inspire the Real Citizens of Life by smiling on the sidelines, being joyful despite my wheelchair. I was a tool for keeping them grateful and motivated to seize their days. I was here to teach them the loftier nuggets of wisdom, like how to live life to the fullest—to provide an opportunity to prove that they were really a good character. I wasn’t here to fall in love, become a parent, broker the deal, crack the case, offer sex appeal, save the damsel, or be president. If I forgot my part—even for a moment—or attempted to audition for another position in the story, there was always another character there to nudge me back to that little piece of tape on the stage marking my spot.

What’s more exhausting—being disabled or trying to shake off the roles that other people constantly expect you to fill?

Disabled people have been assigned a clear part in the stage performance. We are the recipients of help, in need of assistance, holding out a tin can for charity, here to inspire. Attempting to claim another role, a more complicated part, like the one who accepts and offers a bit of help, one who uses a chair to navigate the world and has sex, one who can’t walk and isn’t asking for your money—even if it’s a role that feels natural and fitting—can surprise, confuse, or even irritate the other people in the performance.

This idea that disabled people exist with one sole desire, one holy passion, one desperate fixation on an able body, is overemphasized and obsessively repeated. This doesn’t mean there aren’t any disabled people who want cures; even people who are pretty content in their disabled bodies sometimes wonder about life with a different body. But it often consumes the character’s entire purpose in the plot, with very few alternate narratives to complicate or counter it. It’s an old, uninformed, one-dimensional read on disability that burns on the stinky fuel of nondisabled fears.

In a world without any pictures pairing success and wheelchairs, cute boyfriends and paralyzed legs, glamour and disabilities, I didn’t know how to imagine my disabled body into the stories I found enticing. I knew I was real, knew I had a story to live, knew I wanted love and beauty, excitement and fulfillment—I just needed the body to match.

much of my adulthood—from the big dream to the gritty mechanics—has been about starting from scratch, building from the ground up, and adapting as I go.

I live in a culture that uses my form as a symbol, a shorthand, an illustration for something else—weakness, captivity, and victimization or super strength, triumph, and feel-good inspiration.

Even if I do claim a narrative all my own, when I go out in public, I can feel others’ stories written all over my body—stories I did...

We should bring disabled perspectives to the center because these perspectives create a world that is more imaginative, more flexible, more sustainable, more dynamic and vibrant for everyone who lives in a body.

Disability can give us new stories for navigating an ever-changing world. New stories like: Maybe hard work has its limits. Maybe your efforts aren’t the best barometer for predicting your successes. 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 true love can be tender and caring and steady. Maybe some shit just happens, and it’s not for a greater good, but maybe you’ll find a way to be okay anyway. 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.

Like most camps, it wasn’t accessible. This didn’t surprise or even upset me. It was totally what I expected, what I always expected, from the built spaces around me.

It’s scary to look the facts in the face: my body is vulnerable, impermanent, and only wearing down.

Life feels too hard. I can’t do this. And right there, curled up in the hospital bed at the age of twenty-two, I decide to give up. I’m not going to try—to find a career or a place in this world, to fight for plans to move out on my own, to pay my own bills, to strive to build a life of my own. I will shred any budding plans I might have had for my life and sink deep into the role of invalid like a warm, lethal bubble bath.

the standard (ableist) equation of worth: Hours + Production + Wages = Value. This equation is loud, powerful, and everywhere. Those of us who don’t work as many hours, who don’t “produce” as much (whatever that means), whose wages are lower, or (gasp!) rely on others to survive—we are categorized as a drain, a burden. This ableist model tells us that the human body is a work machine whose value is determined by its production—like a toaster that can toast six slices of bread instead of just the usual two. The more you do, the more hours of overtime you work, the less sleep you get, the more duties you fulfill, the faster you get the work done, the less help you require, the more you’re worth.

I see us try to play by the rules that weren’t made for us, try to fit, mask our needs, ignore our bodies, and push harder, harder, harder to prove that we have something to offer. We throw ourselves into the belly of the beast, the very force calling all of the most punishing shots.

I’m torn, because being disabled and having any job at all is a gift that defies statistics—that counters the very real lived experience of so many folks with bodies that don’t fit. I don’t want to fritter away that gift or express ingratitude for being invited to participate. Nor do I want to suggest that many employers (mine included) wouldn’t do whatever is required to accommodate my disabled body. So why don’t these “special accommodations” feel more empowering? Why do they remain so hard to swallow?

For starters, there’s a contradiction between saying a workplace is inclusive even as it participates in the larger cultural values that celebrate everything a disabled body is not. There’s something unsettling about offering accommodations for an “exceptional” body when the entire system surrounding that body is built on the assumption that more and faster and harder and higher is fundamentally, inherently superior. When you applaud your employees only for arbitrary measurement of work—arriving early, leaving late, never taking sick days or time off, or showing up on the weekend—when you always push for more—production, happy hours, publications, softball teams, cases, meetings, tasks, involvement, spirit, extra—you do not demonstrate an appreciation for those who have a need, who say no, enforce boundaries, or require flexibility—the very stuff of accommodations masked under different names.

In some ways, “special accommodations” insist that the current setup is just fine, thanks. They cling to the idea that only a few outliers can’t fit into the mold, ignoring the fact that even those who can make it work might be better off with a more flexible model. The very notion of “special accommodations” relies on the belief that really, there are only a few who don’t slip easily into the narrow mold of a nine-to-five schedule, five days a week (clock in! clock out!), getting “sick” only a specific number of times each year, recovering from giving birth and being ready to separate from a newborn baby in a predetermined set of days. So many of us agree to these rules, even as we know we don’t thrive there. We’re rewarded when we fit tidily into the parameters set before us, so we pretend, mask, and go along with it as best we can. Those who simply cannot fit are highlighted as outsiders who need something extra to make it work. Instead of looking at the larger, varied collection of humans on a team and creating a structure that accounts for their real experiences, needs, desires, and motivations, so often work systems prefer to dispense the smallest portions of flexibility t...

My dad was my first, most formative picture of Work. He embodied everything the prototypical worker is expected to be. But I have to wonder what parts of himself he would have been able to keep and nourish, how he might have flourished, if he’d been allowed a more imaginative structure. I can almost see it—a world where the breathing, bleeding, exhausted, stretched, and strained human body is invited into the circle, allowed to exist in all its variant forms. What flexibility, what efficiency, what connections, what salves might we find there?

Not being invited at all came with a distinct bite, but an invitation meant that I would need to contort myself into a role that never seemed to fit, an exercise I found to be—more than anything else—exhausting. And after all that effort, I still usually left the party feeling like a drag on all the good party times.

When my sisters talk about fighting morning sickness, whether to Pitocin or not to Pitocin, Ergobaby versus Babybjörn, weaning and baby weight, I find myself relating more to my twelve-year-old nephew and his dramatic retelling of seeing a coyote in his backyard last night than the women around me.

For a long time, I’ve said I don’t want kids, but the more complicated truth is, I don’t know whether I can have kids; I can’t trace where my desires end and my coping mechanisms begin.

A smile on a disabled woman is a feat, a wild victory, a triumph despite. When I smile, people stop to say, “Your smile is just beautiful.” They applaud. They shed tiny ableist teardrops from the corners of their eyes, so moved by any glimmer of happiness they see from me. But my smile isn’t some kind of tremendous accomplishment, some desperate, victorious climb to the top of a mountain.

internalized ableism”—the act of adopting the very ideology, absorbing the precise disdain, practicing the same disregard that is already harming me.

I’m not raising my hand for me. There’s a big, beautiful population of folks who want—who deserve—to be included, too, and raising my hand for us feels different.

What happens to womanhood when we always idealize the most able, the most “successful,” the most independent?

do we miss out on interdependence when we cling so tightly to autonomy?

you live in a community where disability is framed as tragic, sad, and inferior, then claiming not to see that so-called defect feels like a favor. We try to extract the disability from the person, because we think disability is ugly, and the rules tell us that this separation is nice.

Deep within our cultural understanding of what it means to be a human with a body, we position disability below ability and at odds with health, beauty, wholeness, success, and happiness. But I don’t need my paralyzed legs to be erased in order for me to be seen as able, healthy, beautiful, whole, successful, or happy.

So when I think about a kindness that does good to those on the receiving end, I’m not thinking about the person who hands me a napkin when they see me trying to reach the pile located on a high restaurant counter; instead, I’m thinking of the person who notices the napkins are out of reach for anyone who is shorter, uses a wheelchair, or can’t stretch their arms and changes the location of the napkins. A kindness that brings about meaningful ease and access will lead to sustainable, systematic, empowering changes that make the world more accessible for more people.

The goal is not to avoid falling or needing help. The goal is to be seen, asked, heard, believed, valued as we are, allowed to exist in these exact bodies, invited to the party, and encouraged to dance however we want to.

If you want to be genuinely, actively, real-deal “kind” to disabled people, invite disabled voices into your organizations, businesses, and programs. Allow disabled people to perform in more roles than the grateful recipient of generous philanthropists. Recruit disabled engineers and dancers and office administrators and comedians and lawyers and speakers and teachers to participate in your world, and do your best to make that world accessible to them. And if we insist on using the “kindness” word to describe this kind of inclusion, we have to recognize that inclusive “kindness” isn’t just a favor extended to disabled people; including disabled people is a kindness for all of us. Because listening to voices that are typically silenced brings to the table nuance, endurance, creativity, beauty, innovation, and power.

I don’t know where my personal insecurities end and ableism picks up. Who would I even be if my body were allowed seamless access to my city, my community, my friends’ houses? I mean—really—what would happen if I stumbled onto some alternate universe made perfectly accessible to me? It’s hard to imagine such an unfamiliar flow of confidence, self-assuredness, and ease.

How can anyone feel the rejection, reach, and urgency of inaccessibility if the entire world has been built with them in mind?