We’d been in a conversation with one of his co-workers for a good bit, listening to him talk about his time in seminary and the online courses he was currently taking. I was genuinely interested, asking all of the follow-up questions, like I do, when the guy took a quick detour and started asking how Micah and I met. Did I mention to him how vulnerable I had felt dating online with a disability? I don’t know what prompted the next part of the conversation, but even before I recognized what was happening, I started to feel the room disintegrate around me. “I just really commend you, man,” the co-worker said to Micah. At first, we were both confused. Our nodding slowed, our faces scrunched just a bit. Why did Micah deserve praise? “For dating her,” the co-worker clarified. “A lot of guys wouldn’t even look at that profile. That says a lot about you.” I heard myself wholeheartedly agreeing. “Yeah, he’s a special one!” I shouted up at the man who’d just made me feel so small, giving Micah a little punch in the bicep. Chuckle, chuckle, chuckle. I continued smiling and chatting all night, all the while wanting to disappear. I felt so foolish, showing up to this party with confidence, assuming Micah’s co-workers would see me as anything more than evidence of his benevolence.
As the night went on, I drank more gin and tonics, and by the time Micah and I were making our way to the parking lot, I had found my indignation. I rehearsed for Micah the tongue-lashing I should have given his small-minded co-worker, and that night in my diary, I drunkenly wrote: “to the little toad who wanted to give bonus points for dating a girl in a wheelchair: fuck you, you tiny dick-rag in the back of a dirty drain with sick-ass fish. Fuck you.” I’m not exactly sure of the precise image this insult is supposed to call forth, or what sick-ass fish have to do with any of it. But what strikes me here is twofold: (1) the sting of his ignorance still cut me deep, even after years of unpacking my disability, coming into my own, finding genuine love, and growing in self-worth. With four swift sentences, he still possessed the power to completely undo me. And (2) I no longer saw myself as the sole source of the problem. With an hour and a splash of alcohol, I moved through my own self-loathing to locate the problem outside of myself. And even if I hadn’t figured out how to navigate that shift yet—even if I handled it with rage and a filthy mouth—it was a step away from making my body a perfect host for shame. I was able to recognize that this guy lacked understanding. That he could imagine only the stories he’d already been told, and in those stories, disability was only ever linked to sad defects, broken bodies, and dashed hopes.
When I think about our Favorite Men of Reddit and their response to the question “Would you date a woman in a wheelchair?,” 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 our affinity for familiarity that traps us. Our impulse to adhere to that which came before. To stick with the script, follow instructions, keep with the norms. I think the assumption is that this will keep us safe. But the truth is, of course, that we are never safe. On the surface it sounds bleak, I know, but there is something liberating here, too. Thrilling. Inspiring. Anytime we open up our hearts to another person, we risk it all, and keeping our hearts closed is the most straightforward guarantee for loss.
I was much quicker to know that I wanted Micah in my life for the long haul. He took a little longer, and that stung. It also felt true to his careful approach to life, and probably a bit more reasonable than my flash, bang, boom approach. But even after we both felt comfortable using the word “forever” with each other, we weren’t settled on the choice to get married. For me, marriage was wrapped up in the default route to life. I’d been there and had jumped out as quickly as the law allowed. Getting married meant an ostentatious wedding where I didn’t feel present or real—it was trying to fit into a role I’d seen play out countless times in stories that didn’t represent me. How could I hold on to my distinct self under a structure as powerful and loud and established as marriage?
At the same time, I felt myself longing for a ritual, a day to mark, a ceremony with witnesses, a pocket in time and space to set down intentions with this miraculous, ordinary person I liked the most. Was there a way to build our own structure? To reimagine what two people can be to each other? To wipe the slate clean and create something from scratch? Did we have to do this thing like anyone we’d seen before, or could we use our unique quirks and rhythms as the guide?
In some ways, I think my disability is the force that disassembled the template to begin with. Then I found a person who already wanted something different, too. From the way our bodies reach for each other to the expectations we have for the future, we are open and curious. Together, we used our blank slate as an invitation for play and imagination.
I didn’t want a flashy ring or a one-way proposal. We chose a day to mutually recognize what the other person meant to us and declare our intention to commit to a very large building project together. We made collage wedding invitation zines using magazine clippings and thread. We invited only our families—the people who had known us since we were fresh and small and would still be there when we were wrinkled.
There was no aisle at our ceremony, and I definitely didn’t walk anywhere. My chair was a part of all the photos, an extension of me, a part of our romance. My dress was short, form-fitting, and all lace. (I also bought it for $7 at a thrift store three days before the ceremony.) Micah wore a pink floral short-sleeve button-up with a lavender tie, and we rented the rooftop of a building on the edge of downtown. We asked two of our favorite friends, Alyssa and Maren, to officiate, my sister to speak good words around us, and Micah’s sister to say a blessing. We all sat in a circle as the sun went down. Micah and I wrote a song together that we sang at the ceremony. It’s kind of like a vow song, but mostly a reminder of why we chose each other. A song to get in our heads, to sing in the shower or while we’re cooking or when we’ve forgotten why we’re together. A song to come back to us year after year.
Yesterday morning I slept in later than Micah. I’m always sleepier than he is, and on weekends, he gets up first and feeds the crying cats or washes the dishes that have inevitably piled up throughout the week. I rolled out of our bedroom in a giant sweatshirt with my big wooly socks and my bangs sticking straight up like an eighties rocker. I found him working on the computer in our study. Our cranky orange cats were snuggling on the couch behind him, and the rain was making padding noises on our windows. I reached my arms out for him. He moved over to me and climbed onto my lap, straddling me. This is not a scene that has been choreographed in any love story that I’ve ever seen—rom com, drama, or otherwise—but I nestled into his chest, breathed in his scent, and felt the muscle ropes along his back. (And somewhere out in the world, the tiny minds of Our Favorite Men of Reddit simultaneously exploded.) This was our space, our story, our love. I rested there for a good moment and savored us.
3
More than a Defect
“Today we’re going to talk about two models of disability—the medical model and the social model.” I’m talking loudly, pronouncing each word with precision and care, and using my hands to push invisible ideas through the air as a group of high school seniors find places for their backpacks, lean back in their chairs, and whisper loudly to each other about whatever important events happened since they saw each other a few hours ago. I try to signal that we’re getting started by ignoring the buzz and diving in.
Sitting in my wheelchair, I’m at eye level with them, and some have to crane their necks to see me as I push myself back and forth in front of the class. “When I talk about models of disability,” I say, “I wan
t you to imagine that each model is like a different set of glasses you put on.” I place an imaginary set of spectacles on the bridge of my nose. “One set of lenses draws out a particular set of details, while the other set reveals something entirely different.”
During my time in graduate school, I’d given a handful of lectures and presentations on these ideas to college students and academic peers, but this is my first time teaching high schoolers, my first time teaching a disability-focused class, my first time seeing a group of kids five days a week as we work through this material. One month after I defended my dissertation on disability studies and creative nonfiction, I took this job teaching English at an independent high school. I hadn’t been in a high school classroom since I was a student in one, well over a decade before, and I’d never been a student in a high school that expected as much from its students. I was recklessly breaking the unspoken rules of the community (don’t assign seniors a paper so close to their college application deadlines, don’t write page-long comments on report cards, don’t take it personally) and the silent, consistently reinforced values (succeeding, winning, perfecting, more, higher, better, best!).
Instead, my headspace was entirely wrapped up in the work I’d devoted myself to over the previous three years—reading and breathing, writing and dreaming about disability theory, working with texts that felt as supernaturally powerful to me as the Bible had when I was a fervent teenager. By the time I graduated, I saw myself as the chosen disciple who would go forth and teach the people the Truth I’d been given. I was confident that the rampant ableism I felt coursing through the world would be remedied rather simply through education. The problem was just that people hadn’t received a clear presentation of the right information. And wouldn’t you know—I had that information! We were so close to revelation.
One of the greatest appeals of the job was the ability to design my very own semester course for the seniors. I spent the rest of the summer dreaming it up—“Cripples, Freaks, and Invalids: The Marginalized Body as Seen in the Stories We Tell.” I marveled at my great luck in finding a job where I could fulfill my purpose so directly. I agonized over cuts to the reading list and crafted the perfect activities that would allow my future students to really experience the content of the course. I was a bit intimidated to teach this particular group of teenagers. Our school was known for producing the very highest standardized test scores and sending its students off to all of the Ivy Leagues. I worried that they’d chew through disability studies too quickly—that I’d run out of ideas for them to think through.
“So, the medical model and the social model: two sets of lenses that show you the same scene in different ways. One lens, the medical model, is the default set. This is the way we typically look at disability—the way we’ve looked at disability for a really long time. When you see through this lens, you immediately see the disabled body as a problem that needs to be fixed.” I click to a slide with a rough sketch of a woman in a wheelchair sitting at the bottom of a flight of stairs. She looks haggard and frazzled. Her hair is a bit of a mess. In the back of my mind, I wonder whether my students see me in this image—helpless, powerless, ineffectual—but I don’t have time to reflect on it. This isn’t about me; this is about giving them some new ideas to try on.
“Approached using the medical model, this woman and her wheelchair are the only problem that needs fixing. This perspective fixates on the deficiencies in the individual. Maybe there’s a cure for her legs. Maybe we can figure out a way to get her upright so she can walk up those stairs. Or maybe she should just try to find another building.” I slap my hand against her illustrated legs, my own paralyzed ones resting beneath hers on my wheelchair’s footplate. This explanation seems to make easy sense to them. The medical model feels obvious. What other way is there to look at it?
“But the social model sees this scene differently,” I explain, excited to share the big reveal, a shift in perspective that had changed everything for me. “Instead of fixating on disability as The Problem, the social model focuses on the experience of disability, the context of disability, the environments creating disabling moments. The social model looks at this image and says, ‘Let’s shift our focus from the woman in the wheelchair to the building with only one point of access. How limiting!’ The social model says, ‘Let’s build a ramp! An elevator! Let’s redesign this building with fewer stairs, and while we’re at it, let’s open up this floor plan!’” I’m practically singing this part of the lecture, having a dance party in my own head, skipping rapidly over ideas that have lived in my limbs and shaped all of my disabled days for the past three decades. Isn’t this fun? Isn’t this life-changing?!
In the middle of my euphoria, I glance back at my students. The vibe of the entire group seems to have shifted without my noticing. I see squinted eyes, blank faces, scrunched brows. Some of them look entirely skeptical. My heart starts racing, so I talk faster. I hadn’t wanted to bring myself into this, but I’m scrambling for something that will make these ideas feel tangible to them. I reach for a simple example from my life and pick out only the most basic facts. “Okay, so, for example: When I arrive at school, I’m able to push a button that opens the door, I ride an elevator to the third floor and enter this room, no problem. I have complete access to the spaces I need to enter. What could have been a ‘disabling experience’—the inability to enter a building—has been remedied in this case.” They continue to stare back at me with no visible evidence of understanding. “Does that make sense?” I ask, trying to sound casual, hoping they’re just hiding all signs of comprehension.
“Yeah . . . but. The disability is still there. It’s not like it just disappears,” one boy says. I notice how he avoids linking me to the disability itself. I picture the disembodied “disability” hovering somewhere above me, then diving off to haunt some other unsuspecting body.
“I see what you’re saying.” I nod vigorously, wanting so much to affirm any attempt to engage these ideas. “What’s your name again?” I’m still getting to know these kids, still trying to keep all the floppy-haired boys straight in my head.
“Adam,” he says.
“Adam! That’s right.” Star of the soccer team, Adam. Drives a shiny new sports car to school, Adam. “Okay, so Adam brings up an important distinction between disability and impairment. He’s right—the impairment in my legs still exists, regardless of elevators or ramps. They don’t walk, won’t walk, will never walk like yours do. And chronic pain makes this tricky, too, right? The limitations of pain aren’t necessarily solved as easily as attaching a ramp to the side of a building, and, in a lot of tangible ways, the impairment it brings debilitates from the inside out. But for now, let’s start with the simpler example of a paralyzed person getting to the third floor of a building. When I take an elevator up to our classroom, the need for walking has been eliminated. My paralysis isn’t really a problem in this context. I’m not limited in any meaningful way as long as I have an accessible route to get here. In fact, right now in this room, we’re all seated—there’s no meaningful difference between my body and yours.” The kids look even more confused than they did before. I’m starting to feel like I’m giving a lecture on how the royal family are immortal shape-shifting lizards. The uncertainty I feel from my students makes me question myself. Their resistance to these ideas is disorienting.
Because they’re not comprehensively wrong. There is a layer of their narrative that makes sense. There are parts of my body that feel like a problem I’d like to fix. Even as I type this, I’m having a particularly high pain day, and my legs won’t stop spasming—they jerk and tense, stiffen and shudder—and the computer resting on them keeps getting bumped around. If I’m being perfectly honest, living with this pain is infuriating. I’ve been working hard to find a way to manage these symptoms, and all of it—the pain, the spasms, the quest for relief—is exhausting. But this layer of truth isn’t the one we’re focusing on as a class, because it’s the overwhelming defau
lt. 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. And here’s the key: When I trace the most painful threads in my story, when I gather the most defining memories of my life, these legs of mine are not The Most Debilitating Problem. At 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 person is either disabled or not,” another floppy-haired boy says. His tone is sharper than mere confusion. He sounds irritated, maybe even combative, and his sentiment seems to resonate with others. My head is swirling with a hundred ideas and examples and scenarios and questions to push against this common oversimplification, and in an instant, they tangle.
I don’t understand. If any demographic has the capacity to digest abstract theory and try on alternate ways of looking at the world, I expect it to be the ones sitting in this room. They’re members of a generation so much more open to recognizing the unique position of any given identity, an age overwhelmed by unchecked idealism, a distinct group of youths known for their intellectual capacity. Am I an awful teacher? Or, just delusional? Has my personal connection to this material totally distorted my ability to think clearly about it? My mind is spinning, but there are twenty sets of eyes on me, all waiting for me to explain myself.
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