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.

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.

Ableism separates, isolates, assumes. It’s starved for imagination, creativity, and curiosity. It’s fueled by fear. It oppresses. All of us.

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?

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.

I’m struck by the unfortunate, unnecessary barriers seeping through so many responses. I just can’t imagine how it would work. What a tiny planet to create for yourself. What a limited way to experience love, intimacy, sexuality, partnership, and play. 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? It’s

least, not in the way outsiders expect. 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. Despite all that, my paralyzed legs are the only thing outsiders seem to see.

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?

“Dr. Taussig,” she says, looking me straight in the eye. “I love this school and the people in it, but our worlds can be very small. We need conversations like this.”

downloading it onto my laptop. “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.”

“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.”

Some of us get parts as the Real Citizens of Life, and we strive very hard to hold on to these sparkly roles, terrified of losing our positions, or anxious we’re about to be discovered as frauds. Or some of us hardly realize the role has been handed to us at all. What other part would we play? Most are denied these prominent roles and are sent immediately to the margins.

Inclusion isn’t better just because it’s kinder. 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.

This is one of the profound consequences of having an identity you don’t share with the living, breathing community around you—your family and friends, teachers and mentors. When you’re born into a marginalized community whose members share your identity, you are born into a family that understands and knows. They’ve been through the same things. They carry the insider knowledge, and they can help prepare you.

So here we are, well into the twenty-first century, and how do we assert our inherent worth and value as disabled citizens of the world? So often, 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.

that used to take 120 percent of me. At the same time, my body is constantly reminding me: this system was not made for us. My body is exhausted, stretched, strained, worn down by the speed and pace and particular demands of being a Full-Time Working Woman—in regular ways most of us feel, but also in the ways unique to my specific disabilities.

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

When a system rolls its eyes at those who don’t “pull their weight,” then offers to lighten their load, you don’t trust it. These practices are at odds with “accommodations” and create a confusing, shameful space to work out what it means to take care of your body. Accommodations may be offered in this kind of environment, but they aren’t categorized as admirable; they’re a last resort, an unfortunate option, a generous gift bestowed upon the ones who regrettably need something. How many employees feel safe asking for something that seems to diminish their value in the eyes of the people evaluating them?

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?

“Feminism is better when it’s challenged to be more inclusive.”

We live in a world that rewards women who can push themselves beyond their maximum capacity, but not a single woman alive can maintain that push indefinitely. What perspective might disabled women breathe into this conversation?

Not every feminist icon has to be disabled, but I wonder what we might lose when we look up to only the strongest, fiercest, youngest, and fittest—the ones who don’t seem to age in any meaningful way beyond collecting a few graceful wrinkles and rocking white hair. What nuances and insights are we missing by our selectivity?

Do we lose something when we worship independence and villainize dependence? I get why freedom is everything, but do we miss out on interdependence when we cling so tightly to autonomy? I wonder, what could disabled women add to our conversations about the possibility of being an empowered independent/dependent woman?

Thoughtful reactions take time and reflection. What does the person in front of you actually need? Do you even know? Is this really an individual problem to solve in the moment? Or does this individual encounter reveal a structural change that needs to be made?

Disability and charity have long held hands in a confusing, often dysfunctional relationship that showcases how easily good intentions can slip into exploitation. Charles

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.

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.

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.