* * *
That semester, the voices of skepticism in the room swallowed me whole, but distance also allows me to recognize all the students, like Sophia, who were willing to imagine and explore this space with me. While I struggled to keep them in my line of vision at the time, I now hold on to my memory of those kids with gratitude and hope. It’s almost embarrassing to remember the squishy ease with which I lost myself teaching this class. How little pushback I could withstand before I doubted my thirty years of firsthand experience, my PhD in disability studies. I had leaped into this with the greatest naivete, with no preparation for the pain of teaching material with such high personal stakes to a group of teenagers, most of whom hadn’t thought more than thirty seconds about disability in their seventeen years on earth; all of whom were consumed by college applications, a bunch of other classes, and a host of extracurricular activities; none of whom had electively signed up to take this class.
Now, it’s so much easier to see: When I first introduced my students to the social and medical models of disability on that afternoon early in the fall semester, I wasn’t teaching them something I just pulled from the standard curriculum. When I brought them disabled characters and writers to analyze, I wasn’t cobbling together ideas found on an English teaching blog. Like a kid bringing a handful of precious roly-polies she’d found buried in the damp beneath the heaviest rock in the yard, hands open cradling her delicate treasure, I was sharing with them some of the most personal, most earth-shifting ideas I’d gathered from my time in graduate school, from the entirety of my life. I hadn’t realized the tenderness swathed around my academic training, and they, of course, had no way of comprehending these fragile layers.
Back when I was nearly a year into my PhD program and moments away from quitting the whole damn thing, I read my first bit of disability studies. I was sitting in my ugly green velvet chair, weary with academic-speak, disillusioned by how little any of this seemed to matter, entirely uninterested in the stiff and stifled ideas I was sacrificing sleep, financial stability, and my well-being to study, when I opened an email from a friend who’d sent me an attachment he thought I might be interested in reading—Lennard Davis’s introduction “Disability, the Missing Term in the Race, Class, Gender Triad” (from his book Enforcing Normalcy: Disability, Deafness and the Body). On the surface, this title sang the same pompous tune of the twenty other articles I’d read that month. (Why so many lists of three and colons, academia?) At the same time, even just seeing the word “disability” printed in an academic title with such authority stirred me. It was published when I was nine years old, and here I was, nearly twenty years later, 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.” I was stunned. What was he saying? It was as if I’d spent years acting my part in an elaborate stage performance, squinting under a relentless spotlight I hadn’t even known was there, baking under the heat of one steady lamp, unable to see past the edge of my paralyzed legs. Wasn’t this just life? Suddenly, the spotlight moved to my left and I could see the set behind me, the chairs in front of me. What was this feeling? This relief? Disability isn’t just me? Located in my scrawny legs that drag instead of lift? Carried in the scars running down the length of my spine and the edges of my hip bones? Disability is something that expands beyond me? That involves everyone? This was my first experience hearing someone describe the forces that had remained entirely invisible and wildly powerful throughout my life. I’d always sensed people in an audience, other actors on the stage, and an elaborate set, but no one else confirmed they existed, so I’d tried to ignore them.
I lapped up his words as he continued, “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.” The words sent tingles down my face, shoulders, arms, and through my pores. They caught me in the back of the throat and sprouted through my tear ducts. What if I wasn’t just a broken version of a whole person? What if I wasn’t “the problem,” the burden, the thing to fix? I could feel the physics of the universe shifting around me. This was my very own Truman Show moment, only the big reveal brought with it relief and power.
My brain was sparking, my heart was thumping, I couldn’t slow down, I just kept devouring the words until I ran straight into a story that made me stop. Davis explained that the “impulse” to gawk at, push aside, erase, or eradicate the disabled body is not an inherent human trait. This is not some deep-seated “survival of the fittest” drive designed to keep us alive. Instead, he argues that this reaction to disability is learned. To illustrate, he tells a story:
One student told me that her mother had no fingers on one hand. As a child she had never considered this particularly strange, and she was always surprised when strangers stared at her mother’s hand. To her it was a loving, caressing hand that she might joke about, kiss, or hold. The point is not that she was habituated to what others might consider a horror, but that she had not received the instruction to cast the hand away.
The image felt like a thwap to my gut. I recognized the intimacy between the child and her mother’s hand. I felt it in my own bones. The familiarity released a valve holding back my tears, and once it was turned, I couldn’t shut it off. This comfort, this affection, this safety between the disabled body and the ones who love it was a feeling I’d felt before, a long time ago. This was me with my family, with my siblings, scrambling around like puppies in a box. In our backyard on my hands and knees, dragging myself up to the top bunk, sitting with my legs bent in unexpected directions—to the siblings who grew up with me, I was always, simply Rebekah: their little sister who talked like a baby much too long, hogged the sugar bowl at breakfast, and scabbed up her knees crawling around the neighborhood. The memory of this easy, comprehensive acceptance crushed me. It still does—to close my eyes, feel its gift, and know there’s no real way to get back to that exact place.
That night, Lennard Davis took me through my introduction to the social model of disability, point by point. In a process that felt like actual sparks of magic, his words became a tool I could use to dismantle some of the sturdiest narratives that had dictated my self-perception, my life choices, my interactions with the people around me. These were stories that had been reinforced over a lifetime, stories that had ingrained in me the very mindset my students found themselves nodding so comfortably along with, the perspectives that had done tremendous work to silently, steadily place the labels of Defect, Burden, Outsider, and Problem around my neck. The medical model had taught me early and consistently that my body—my presence in any given space—was an object to puzzle over, poke for study, push to the fringes, and try to fix.
The medical and social models of disability aren’t theoretical to me. They are just as much a part of my days as gravity or Netflix. They are always, always there. I’d expected my students to feel this with me, to access these theories the way I had, to experience them with the same sensations. Of course, this was never going to happen. Could never happen. And if I’d known my expectations, I could have prepared myself for this. But I hadn’t realized just how tangled up my most vulnerable life stories were with these theoretical models until I tried to teach them. As I sat in front of those kids, pointing to slides with bullet-point definitions, I was also carrying personal scars inflicted by the medical model over a lifetime. They saw a definition to write down in their notebooks, but for me, the medical model wasn’t just a theoretical ideology. I’d absorbed it into my own body. I’d believed it more than anyone.
I wasn’t sure whether I could bear to teach a class on disability studies ever again. My first semester proved just how difficult it could be to recognize and value an understanding of these two lenses, let alone practice looking through them. Althou
gh I still believed that grappling with these ideas in a classroom was vital work, I wasn’t sure I had the fortitude for a second round.
* * *
On the last day of class, I mention that this might be the last semester I work through this material with students, and some of them seem surprised, which takes me off guard. It’s my first clue that they really don’t understand what this class has been like for me. It highlights how differently we experienced these months together. As much as they’ll never be able to grasp what it felt like for me to sit through our conversations, I’m certain I’ll never know what they took from the class. I often find myself wondering, though: Will any of our discussions or readings come back to them as they get older, experience more, interact with more people, get some distance from childhood, have their own children? Will they surprise themselves by the perspectives they’re able to offer in conversations about representation or healthcare? Will they even remember where these ideas first sprouted?
One of the other English teachers I work with says that teachers’ fists are full of seeds, and we spend our days throwing them across the concrete pavement, never knowing when or where one of those seeds will take root or what plant might start pushing its way through the cracks. I haven’t decided whether I find this picture comforting or not.
I do know that being the only visibly disabled body in a room of seventeen- and eighteen-year-olds while trying to persuade them to care about school, let alone about the real experiences and representations of disabled people—to challenge all they think they understand about bodies and norms and identity—is a recipe for discomfort. For all of us. I’ve learned that the dismantling of ableism can be a violent process, and bearing witness from your front row seat probably means you’ll end up catching some of the blows. I saw my own idealism drain in this space and felt the loss. I also know that discomfort can be a sign of growth. And I think growth is worth discomfort. (Usually? To a certain extent?) At the end of the day, despite the darkness and loss, the strain and bruises, I do see that I grew, and I don’t think I was the only one.
So, like a genuinely reckless person who can’t have lost every shred of her idealism, I decide to give the class another go. This time, though, I make some fundamental adjustments. I intentionally provide more possible points of connection for the kids. I take care to protect myself a bit more. Instead of focusing exclusively on the disabled body, I expand the curriculum to look at the narrow scripts we’ve written for other bodies, too, like gender-nonconforming bodies and fat bodies. I use the medical and social models of disability as tools to investigate a broader set of questions exploring the notion of “cures” and “fixes.” I ask questions like: How much of the human body do we want to cure? What should be fixed and what should be left alone? What is the purpose of categorizing bodies, and what do we lose when we do it? What do we lose when we fixate on a cure? Is physical health more important than well-being, mental health, or pride in one’s identity? What is normal, and is it an ideal goal?
On the first day of class, I ask the group whether they have any idea what this course is going to be about. No one does. Here we go! I prepare myself for another semester with uninterested, unengaged students.
During the first weeks of the semester, I assign them a series of articles from the disability section of the New York Times written by a few disabled writers thinking through what “cure” means to them. At first, our conversations sound like a taped recording of the previous semester: It’s foolish to push against a cure that would make life so much better for everybody. Disabled people shouldn’t feel threatened by a push for a cure—they don’t have to get it if they don’t want it, so why do they care?
Then, without any prompting and seemingly out of nowhere, one of my students brings the conversation to a very personal place. He tells the story of getting diagnosed with attention deficit/hyperactivity disorder (ADHD). He talks about medication and identity. He describes what it feels like to be in his brain from hour to hour, the unique challenges it brings, but also the joy and abundance. His story adds life to our discussion. It also sparks more stories.
Apparently, we quickly learn, four other students in our class of fourteen are diagnosed with ADHD. They all start telling their own stories, how it felt to be diagnosed, and what it feels like to be in their bodies. Some of them express a sense of pride and identity in having ADHD, while others say it is entirely insignificant to their sense of self. Some say they’d never take medication for it, while others say medication has changed their lives. Our conversation runs over into the next class, and we have to pull ourselves away from it. Not everyone participates, but for most of the group, we discover so much more to ask and share. This becomes a class pattern. We always run out of time to explore.
The last weeks of the semester are my favorite, because I send students out on their own to investigate the ideas discovered in our class. “It’s your turn to interrogate this impulse we have to pathologize and fix some bodies and accommodate others. Where else do you see this happening? What patterns do you see unfolding around you?” They come back with so much—more bodies, more connections, more questions. They ask: How does rhetoric dictate the way we look at fatness? What drives us to pursue cosmetic surgery, and is this a bad thing? Is makeup a medium for empowerment? Does the cosmetics industry reinforce beliefs in our bodies’ insufficiencies? How do we navigate the burgeoning field of gene therapy and “designer babies”? Who gets to decide what traits are worth propagating? And how?
I don’t know how to measure what this group will take with them from our time together. I have no clue whether they’ll remember the medical and social models of disability when they set off to their college campuses next year, whether any of these ideas will come back to them when they vote in their first elections, or get their first jobs. I do know that we explored a whole lot of shit together. That we went on a roller coaster ride of rethinking some of the most deeply ingrained beliefs we carry as a culture. And this is not small.
* * *
I’m not teaching this class again for a while. I’m ready for some distance, ready to try something new. But a couple of weeks ago with my ninth-grade English class, we were working through a book when I started to notice that the social and medical models of disability felt relevant to the story, so I decided to give the lenses to that group of fourteen-year-olds. Because who knows what plant might start to push its way through the cracks? I adapted my slides to be a bit more ninth-grade friendly, I told more stories, I used the same image of the woman at the bottom of the stairs, and I didn’t expect the information to transform their souls or worlds. They listened attentively, they did their best to apply it to the book we were reading, and most of them didn’t seem to grasp the big picture.
And then. Three days later, Claire calls out to me while the class is getting settled. Claire is a ball of nerves. She’s usually trying to sneak her phone out during class and can’t stop chatting to whatever human person she’s sitting next to, especially when I’m giving instructions. In other words, she doesn’t stand out as a kid I’d expect to remember all that much from her English class.
Today she says, “Dr. Taussig! I saw this ad that reminded me of what you were talking to us about the other day.”
“Oh, yeah?” I say, trying my best to listen to her while I take attendance. “What ad?”
“It was for this adaptive controller thing?” she says. “It didn’t have so many buttons, and it had this smooth surface, and they had all these kids with disabilities that were playing video games with it, and it was just like we were talking about.”
Suddenly, I forget about attendance. “The Xbox adaptive controller?” I ask. Poor Claire has just become my reason for teaching, my life’s fulfillment, my favorite thing.
“Yeah, yeah!” she says.
“Claire! That’s a perfect example of what we were talking about!” I feel like hugging her, and I might cry right there. “I mean, instead of just assuming video g
ames aren’t for disabled folks, they played with the setup to invite more players to the game! And the adaptive controller makes playing video games so much more accessible for so many more people, right? Old people or people who are less coordinated or someone just learning to play the game!”
“Yeah. It just reminded me of what you were talking about,” she says, not quite matching my wild-eyed intensity, maybe a tad bewildered by my overwhelming, face-splitting enthusiasm, but I feel fine with that, because I see the smallest bit of green pushing through the concrete.
4
The Real Citizens of Life
I don’t think I was the only middle-school girl obsessed with imagining my life as an adult. What will I look like? Where will I live? How many bridesmaids will I have, and what will my wedding dress look like? Living in a pre-Pinterest world, I cut out pictures from magazines that helped me imagine my beautiful future life—pictures of happy brides and sophisticated women with shimmering hair and smoldering men with well-fitted suits—and taped them onto my closet door, tucked them into the frame of my dresser mirror, and glued them to poster board that I labeled with silvery gel pens.
Sitting Pretty Page 7