Sitting Pretty: The View from My Ordinary Resilient Disabled Body

by Rebekah Taussig

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

This!

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?

All of this!

“Learn how to tell a new story, you ableist toad pots! You’re a hundred years late! This is boring!”

Disabled folks appear everywhere in our stories but are almost completely rejected from writing rooms, directors’ chairs, and acting gigs. The ones being represented are not consulted or included.

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.

Your preconceived notions are not our reality.

So, yes, let’s agree that disabled people are an essential, vibrant part of our world, and they deserve to be treated as such. But if we stop the conversation here—if we think this is all there is—we haven’t moved much farther than the “right” answer—Diversity and inclusion are good! Don’t be mean to disabled people! 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.

Let us tell our stories.

Some of my sick days were tied up with the unique pains of my body. At least once a month, my back and side would surge with raging nerve pain that flared every time I spoke or took a deep breath, let alone moved my whole body. Some of it was surely wrapped up in anxiety and depression. I felt like a glaring typo on the text of my high school, a clear outsider, the thing that did not belong. I’m certain there were others who felt this way, too; I just didn’t know how to see them yet. And of course, navigating through a world that doesn’t operate with your disabled body in mind is simply exhausting. I didn’t understand the web of factors pushing me back into bed day after day. Instead, I just felt like a giant, incompetent failure.

But qualifying for government healthcare is contingent on remaining poor. In other words, 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.

To get the health care you need you must stay broke and that’s a shame!

Before this moment, I had no idea these ideals were lurking just beneath the surface. I didn’t know how good it would feel to fit into 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.

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. I’ve lost mobility since I started this job. I’ve developed a cyst between two vertebrae in my lower back that has invited new levels of pain and spasticity in my body.

Exhaustion is a real thing as much as I try to fight it.

As a culture, Americans are pretty well convinced that disability is something they’ve figured out. In fact, this was a puzzle solved years ago. How could ableism exist when we’ve memorized the rules? Don’t say the R-word; don’t make fun; disability doesn’t define anyone; just try to be helpful; and the rule that guides them all: Be kind. I’ve seen so many people perform these creeds in one form or another.

Memorized the rules, but never really gotten to know the people.

This is the power of the one-dimensional, deeply embedded, ableist script in our culture. Some bodies are Victims, others are Heroes. Some bodies need help, other bodies give help. We tell and retell these stories, and we feel really good when we do. Not only is this story common, it’s cherished, revered, beloved. Like royal weddings or animals of different species cuddling, we cannot get enough of stories that involve kindness and disability. I know this because of the internet.

But here’s the problem: we have ignored the perspectives, stories, and voices of disabled people for so long that their actual needs, feelings, and experiences are hardly acknowledged, let alone understood, at all. Our default impulses draw us firmly and consistently into the perspective of “able-bodied helpers.” We look through these people’s eyes so regularly, are so eager to identify with them, so ready to celebrate their generosity that we forget to ask even one of the many questions hovering around the disabled recipients of “help.” Like, how did this experience feel to you? Did you want anyone’s help? Was it even helpful? What needs did you actually have in this moment that remained ignored or misunderstood? What could be put into place that would anticipate this need so that you aren’t forced to be dependent on the kindness of a random stranger who may or may not be there next time? Did you know you were being filmed or photographed? Do you want those images shared? All over the entire internet? Did this moment make you feel like a spectacle? How many times have you been put in this position before?

These kinds of articles and social media posts refuse to look at the big picture. They don’t unpack why there is such a social stigma around taking a disabled person to a school dance or why airlines will happily accept money from patrons like Tim Cook when they don’t have any plans in place for accommodating them.

Why is this a feel good blanket for the able bodied?

“Hi, Rebekah. I was sitting at that table over there,” she points to a spot across the room, “and I felt God put it on my heart to pray for you. Could I pray for your healing to be able to walk?” Her smile is steady and sweet, and my head explodes with the word “No.” No. No. No, no, no, I do not want you to pray for my healing. As if my “happy ending” won’t come until I move from place to place with legs instead of wheels? Lydia can see the effects of childhood cancer on my incapacitated legs, but she can’t see anything else.

This drives me nuts!

(It’s steep. Also, I never work out. Also, gin and tonics.)

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.

Give us a seat at the table.

I’m used to waiting three times as long or not having a place at all.

Hear hear!