Sitting Pretty

by Rebekah Taussig

  “Okay, let’s try this,” I say, trying to keep my voice chipper and casual. “Imagine a deaf woman who knows sign language walks into a room full of people signing. In this context, she has every ability to communicate with the group, ask questions, express her needs, make jokes. Now imagine that you enter that same room with your hearing ears. Does anyone in here know sign language?” They shake their heads, no. “So when you enter that space, you are the one who lacks access, can’t communicate, is on the outside, right? The person sitting in the ‘disabled’ seat is flipped depending on the context. It just so happens that most spaces are designed for your access, but there are other ways this could go.”

  “But the woman in this scenario still can’t hear,” Adam insists. “I don’t see how her lack of hearing could be considered anything other than a deficit, a biological defect.” The thrust of his emphasis, the sourness of his tone, takes my breath away. I’m aware that Adam’s is a common point of view he’s inherited from those who put these ideas into motion well before he was born—a legacy none of us has fully escaped. I can almost feel Alexander Graham Bell in the room with us, proposing legislation that would keep “deaf-mute” people from marrying and reproducing in hopes that we could rid the human gene pool of these traits. But this might be the first time someone has argued this position to my face. It’s definitely the first time it’s been placed before me in a room full of teenagers as I sit with my “defected” body in front of my carefully crafted slides. Perhaps even more painful than the bite of his words is the silence from the rest of the group. I wait for anyone to challenge him or ask a follow-up question. They don’t, and suddenly, I feel extraordinarily alone and dangerously vulnerable.

  * * *

  When I think back on this conversation now, the original loneliness doesn’t sting so much. I mean, I was asking a group of very young people to rethink their basic understanding of the world. This was always going to be messy. Most of them had only ever considered disability as a catastrophic tragedy, an unfortunate error. Most of them had little capacity to fathom the gain that can accompany loss. Their response to concepts that remain unwieldy for many intelligent adults happened to bruise my forearms, but I’d invited them into that brawl without wearing any armor. I’d been living in an academic, disability bubble, and without realizing it, I’d volunteered to burst it in a high school among kids who had never had to confront these ideas. Some awful shit was bound to surface.

  After that lecture, I went home deflated, embarrassed, and full of dread for the months ahead. With only a few hours left in the day before it was time to do it all again, I started frantically revising my lesson plan for the next day. If this were a movie, this would be the point where we transition into a heart-wrenching but ultimately uplifting montage. The music would build toward a victorious crescendo with clips capturing the leap from confusion to enlightenment, hostility to joy, frustration to smooth sailing. After beating her head against the wall trying to connect with this group of kids, the disabled teacher finds the key! She breaks down their barriers, one by one, and brings disability to life for this group of students. Finally, after buckets of sweat and tears, she watches as their eyes sparkle with hard-earned recognition. Yeah, turns out this wasn’t a movie.

  * * *

  In real life, none of this process is cohesive or linear. Some students find sparkling moments of connection, then seem to lose interest. Some are always on top of their tasks, while others become increasingly agitated and restless. So I spend the rest of the semester throwing everything at the wall, hoping something will stick. I swivel from theoretical and abstract to pragmatic and cultural. I introduce the concept of disability as an identity, and to my horror, one trio of students essentially turns the conversation into a brainstorming session of all the reasons the world would be better if disability were entirely erased from the surface of the earth. I know this was a theoretical exercise for them. For me, I swear, it felt like eavesdropping on the future leaders of the world as they drew up a proposal for the elimination of my community.

  I take what feels like a risk and invite them into my personal world for a day. Maybe I’m the barrier and hearing me tell my own stories will be the connection we need. I show them my Instagram account and take them through some of the pictures and stories I’ve posted there—pictures and stories intended to complicate traditional tropes and invite people into the most personal textures of a disabled life. This makes some of them more engaged and others even more defensive. We watch classic films, clips from Netflix, TED Talks. We spend time unpacking Me Before You, a 2016 film that earned an angry backlash from the disability community by reducing the experience of disability to one very privileged man’s oversimplified desire to die in his quadriplegic body rather than be a burden to the women he loves. We read passionate, articulate critiques from disabled writers about the precise ways this movie harmed the disability community. In response, I read several student papers arguing that the disability community should stop complaining about skewed media portrayals—they’re just stories! They research some of the starkest inequalities in the disability community. Some of them seem stirred by the profound injustices they find, while others seem too uncomfortable to look this in the face. We read a beautifully strange book called Geek Love about a very fictional family of circus freaks, and most of the reactions are bewilderment. (I mean, understood. It’s a delightful book, but true-blue weird.) Mostly, I am flailing, and they seem just as lost.

  During a discussion about a chapter from Andrew Solomon’s book Far from the Tree, I invite them to explore the blurry relationship between illness and identity. Solomon grew up at a time when many people still considered being gay an illness. Later in adulthood, working as a psychologist and writer, he was amazed to find compelling overlaps between his experience as a gay man and the vibrant identity and pride he’d stumbled upon in the Deaf community. Originally, he’d seen deafness as nothing more than a defect. A loss. The more time he spent with those in the Deaf community, the more he listened to their stories, the more he recognized something familiar. Like most gay children born to straight parents, many deaf people are born to hearing parents. Like Solomon experienced in childhood with his own straight parents who longed for him to be straight, he learned that many deaf kids are encouraged, or even forced, to match the hearing world of their parents as much as possible. It’s only later, often in adolescence, that they discover others like themselves and a sense of identity in the characteristic that makes them different. “I thought that if gayness, an identity, could grow out of homosexuality, an illness, and Deafness, an identity, could grow out of deafness, an illness, then there must be many other categories in this awkward interstitial territory,” Solomon writes.

  “This doesn’t feel like a fair comparison,” one of the quieter girls in the class says. She spends most days drawing elaborate doodles in the margins of her notebooks or staring out the window. I’m ecstatic to hear her voice in our conversation.

  “There are definitely limits to this comparison,” I say. “Being gay and being disabled are not the same thing. In fact, there are lots of ways that they’re fundamentally different. But let’s talk it through. What feels unfair about this comparison?” Her engagement with this idea feels fragile, and I try to tread delicately. I don’t want to break the thread she’s pulled.

  “Well, there’s no real reason a person wouldn’t want to be gay. There’s nothing wrong with it,” she reasons.

  “You’re absolutely right—there is nothing wrong with being gay. But it’s interesting your argument hinges on the assumption that there is something inherently wrong with being disabled.” I pause. This is the idea so many of them can’t loosen their grip on. I try another angle. “Right here and now, we can look at being gay and recognize that there is nothing wrong with it. But not so long ago, most people in our society were still sold on the idea that there was something biologically, socially, morally, and evolutionarily wrong with being gay. We bui
lt a hostile environment for gay people to live in, then used that harshness as evidence that being gay was an inferior path to follow. When Andrew Solomon’s parents wished for him to be straight, part of this was a desire to protect him from a life that was surely going to be made more difficult, not because he was inherently defective, but because the world had been set up to punish him. I mean, you guys, being gay was considered an illness in the United States until 1973. Can you believe that? A lot of your parents were born before then. Your grandparents were full-fledged adults living life surrounded by this way of thinking. Things have even changed in your short lifetimes—when you were born, it wasn’t legal in all fifty states of this country to get married to someone of the same sex. That didn’t happen until—what—three years ago? Today, most people in our country see that being gay is just another way of being in the world—another identity worth celebrating—but that wasn’t always the case. And that’s still not the case in a lot of places.”

  “Okay, yes, but all of that is just ignorance,” she interjects. “Bigoted people making life harder for gay people. There’s still nothing inherently wrong with being gay. Like, a gay person isn’t defective. They’re literally just attracted to the same sex. Being disabled is just something in your body not working right.”

  Here we are again, right where we started. My whole body sighs before continuing. It was easy for them to see the value in gay culture, gay identity, gay pride. I wondered why it was so difficult to see even a shred of value in disability. “That’s the crux of it, isn’t it? Is it possible for disability to be anything other than a defect? If identities are built around defining characteristics, can disability represent another form of difference worthy of community, celebration, identification?”

  As my students start packing up their backpacks, I talk faster. “At the very least, it’s worth thinking about the possibility of disability as a neutral category, an experience with highs and lows not unlike those of nondisabled folks. . . .” They break eye contact, already mentally in their next class, running through questions for their upcoming physics quiz. “And on that note, we’ll pick up this discussion tomorrow!” I call after them as they head to their next classes.

  When I think back on this conversation, I wish I had simply said: 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? Although, it’s an impossible game, I’m trying to find the perfect combinations of words to unlock the code. I’m not sure there were any magic phrases that could break all the way through the intricate and constantly reinforced narrative of ableism. That takes time, experience, and a desire to understand, I’ve learned. As the semester continues, it often feels like students are simply becoming more entrenched in their original ideologies. Disability can be only a loss, a defect, a deficiency, a problem to solve or eliminate. I don’t know how to pull out of this cycle.

  But there are moments over the course of the semester that feel victorious. The smallest signs of understanding set off heavenly bells that can ring for days: The afternoon I describe the Capitol Crawl protests in 1990 that led to passage of the Americans with Disabilities Act, and they all wonder why not one of them has ever heard this part of US history. The student who researches the history of institutionalization and concludes her presentation with a stunning, insightful description of the larger patterns of exclusion and erasure surrounding the disability community. The day we Skype with writer, pole dancer, wheelchair-user, and self-proclaimed “International Sex Icon” Erin Clark, and one student asks, “Do you wish there was a cure for your disability?” Erin answers honestly, with raw reflection, self-aware contradiction, and rich complexity, and my students get to witness her waltz gracefully through this gray area without the easy answer so many of them expected.

  Around mid-semester, star-of-the-soccer-team Adam arrives in my office. “I’ve been trying to have an open mind about this class,” he starts, “but I just can’t bring myself to care about anything we’re reading or talking about. I mean, none of this has anything to do with me or will ever matter to me.”

  I don’t know what expression I make with my face or how much time goes by before I speak. I’m not surprised he feels this way. He’s already made his position pretty clear in every conversation and assignment. But I’m stunned that he feels no shame saying it out loud. To my face. When I’d started teaching this class months before, I’d been fully convinced that I was about to teach these kids some of the most exciting, valuable, universally relevant, revolutionary ideas they’d ever come across. I could see a new future just over the horizon, and we were going to build it together with education, collaboration, imagination, and care.

  Has it been two seconds of silence? Twenty minutes? I’m not sure. “Well, Adam,” I finally say. “The fact that you have a body means that this class is relevant to you.”

  “Yeah . . . but I don’t have a disabled body.” He talks slowly, methodically. He seems confused that I’ve missed this most obvious detail.

  “You have a body that meets some form of access or limitation at every turn,” I insist. I can see this from where I sit. While I’m less sure what his limitations are, I can see the buildings and trails, the career paths and media representations that have all been built with him in mind. “That doesn’t interest you?”

  “No, not really,” he trails off.

  He seems as baffled by me as I am by him. He continues to resist, I continue to counter, and our conversation goes nowhere. I take another approach. “Okay, let me ask you this.” If he really can’t find any way to connect with this content, maybe we can think about this from the opposite angle—maybe he can find the curiosity to understand a group whose lives are considerably different from his own. Maybe the goal should be to provide a setting where he can practice caring about people he perceives as categorically, comprehensively different from himself. “If we were reading stories about the experiences of Indigenous people in this country, would you feel more invested?”

  “No, not really,” he says. Wow, this kid has no shame.

  “The experiences of women?” I ask.

  “Well, yeah. I’d care about that.”

  “Why?”

  “Women are a part of my life,” he says.

  Okay, is this kid messing with me now? Or is he doing these gymnastics in his own brain? He’s working so hard to pretend that disabled people aren’t a part of his world—could never be a part of his world—when he literally has a disabled woman for a teacher making direct eye contact with him at this very moment. I’ve never seen anyone work so hard to not care.

  That whole semester, I feel like I’m trying to drive my car up a mudslide. No matter how hard I pump the gas, rotate my steering wheel, or put the car in reverse, my tires just keep spinning, sinking deeper and deeper into the sloppy mud.

  There are some moments—exchanges, expressions, and student papers—that bolster me. I try to focus on the one kid making eye contact during a lecture, or the tiny signs of understanding in the third paragraph of that one paper. One afternoon, Sophia stays after class. She’s one of those kids who’s always smiling and nodding at me during a lecture, even on the days when almost all of her peers are on their phones or doing homework for other classes. Today, as she slowly packs her notebook and pens into her backpack, she’s telling me how devastated she was by a scene in Susan Nussbaum’s Good Kings, Bad Kings. (No spoilers, but it’s about a group of disabled juveniles living in an institution together, and it does not shy away from some of the harshest realities of being poor and disabled.) Sophia’s not the first person to express distress about this particular scene, but her distress seems to live in a slightly different location. Unlike a lot of kids who came into our classroom shocked that they’d been subjected to a book with such horrifying content, Sophia seems upset that the scene represents the experiences of living human beings in our world. I exp
ress as much to her. I’m trying to emphasize the beauty in her empathy, but I’m pretty sure some of my weariness in the class’s general apathy seeps out.

  Sophia pauses. It looks like she’s sorting out what to say back, and I’m immediately uncomfortable. I don’t want her taking on my feelings about the overwhelming weight of indifference in our classroom, so I start rambling about the book, and Sophia interrupts me.

  “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.”

  Her acknowledgment takes my breath away. She doesn’t say that every concept we’ve discussed in class makes perfect, immediate sense, and I know at least part of this course has felt uncomfortable to her. Instead, she insists that understanding the experience of disability is worth our time and energy—a sentiment worlds away from Adam’s determined disinterest.

  Even with glimmers and sparks from curious students who do want to explore and understand—even with Sophia’s powerful acknowledgment—going to class each day starts to feel like jumping into an ice-cold pool. My body stiffens before each conversation. I hold my breath, just trying to survive. Five days a week, eight hours a day. There is no distance, no buffer, no relief from these exchanges.

  After a particularly brutal discussion with one of my classes, I go to an antique shop with Micah. We’ve been there countless times, and it’s usually a happy escape. This day, the entire space feels altered, like I’ve swallowed a pill that throws an eerie wash over everything around me. As I push myself through the cluttered rows of old books and funky lamps, around groups of friends trying on hats and clusters of women peering at price tags through bifocals, I feel my students’ comments pulsing through the crowds: Disability is nothing but a defect. The world would be better if disability were removed from it. While I might have wondered before, I feel certain now: this is what everyone is thinking, what everyone has always been thinking. The past few years I’d been living in an academic bubble, but my students had confirmed what I’d always known in my gut. They’d lifted the curtain and revealed a world that wanted no part of me. I feel anxious and shaky, unwanted and in the way. I can’t warm the chill that has crept into my shoulders. I want to hide. Stop trying. Bury myself in blankets and a steady stream of The Great British Bake Off.