Sitting Pretty

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. (There are other complications and particular abuses attached to those who are born into a community with shared oppression, but collective insider knowledge seems to be a unique gift, as well.) People with disabilities are usually born into families that don’t share their disability or know anything about the world they live in. Family members can learn, but they’re starting from scratch. I didn’t know anyone who’d navigated their own adulthood from a disabled body, and I’d never seen it depicted meaningfully on a screen or a page. I’d never talked with a disabled woman about falling in love or how she chose her partner, didn’t know any inter-abled couple who could model or describe this part of their relationship, had never heard anything about programs that might have helped me find a job or get some health insurance. In my universe, this was the Wild West, and I was the only cowboy of my kind, trying to live on drips of water from a prickly cactus.

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.

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.

I still remember hearing about the guy in his class who teased Sam, saying, “At least my girlfriend can run.” I read the words now, and they have the sting of one sad, crumpled red cup—it’s empty and weak. Yay for you! A girlfriend who runs! Sounds like a great time. You must be so happy together, what with the running she does. Even Sam didn’t seem too bothered by the joke at the time. But I remember turning the sentence over and over in my head—at least my girlfriend can run. Because, of course, it tapped into so much more than just running. Girls who run are the girls worth catching. They use their running skills to twirl and walk down runways and have all the fun in bed. Girls who can’t run might as well be old ladies living in nursing homes that smell stale and sad.

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.
Like the folks who try to do me a favor by keeping me separate from this disabled body of mine: All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair! I don’t think of you as disabled. It’s meant as a kindness, but it feels like erasure. These words handpicked to soothe the wounds of disability are weapons themselves, reinforcing the deep-seated belief that beauty and value can’t coexist with the deviations we all know I embody.
I think I understand how it happens: If 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. But do we attempt to extract thinness, Ivy League education, or wealth from a person? Of course not. We see these characteristics as inherently positive. Maybe individuals hold on to these features as part of their identity, maybe they don’t, but as a culture, we don’t take it upon ourselves to graciously inform people that we see past their fit bodies, fancy diplomas, and piles of cash. There is no urgency to ignore thinness, no discomfort in recognizing education, no knee-jerk desire to erase wealth. 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.

“Okay, but think about this—think how important it is for white feminism to be dismantled,” Maren says. “Feminism is better when it’s challenged to be more inclusive.”
It’s easy to agree with her. A feminism that considers the injuries and oppressions of only white women ultimately punishes women as it continues to participate in racism. I can also see that when feminism equates womanhood with vaginas, it continues to fuel the harms of transphobia. When feminism expands its understanding of what it means to be a woman, it’s made stronger, better, richer.

I can’t trace where my desires end and my coping mechanisms begin.

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

Micah asked me about my wheelchair. Gracefully, with care and curiosity in the middle of a back-and-forth thread about pain and empathy, he wrote: “You mention in your profile that you’ve used a walker and a chair since you were young. Is that something that has taught you empathy? How has it shaped your life? Maybe it’s a ridiculous request, asking you to fit such a large matter into a typed message, and maybe there’s a more polite way to be curious about such a situation, but curious I am, and so I ask.” His question, his tone, his word choice delighted me. I treasured his genuine curiosity. Not a greedy grab for gory details, but humble interest. An acknowledgment that he didn’t know what it meant to me, and he wasn’t about to step in and try to fix anything. He simply extended an invitation for me to share my stories. I couldn’t have crafted the inquiry better myself.

My story probably wouldn’t include romance. I wasn’t a good fit for partnering with another person. And truly, that was okay with me. I liked my story as it was. I liked who I was on my own. This was a hard-earned space I’d created for myself, and I was grateful to rest there.