Writer, teacher, and disability advocate Rebekah G. Taussig explores disability as an identity and the importance of representation.
by Rebekah G. Taussig
illustrations by Maia Boakye
This fall I started teaching a disability and literature class to a group of high school seniors. I’d been dreaming of teaching a course like this for years, but now it was real. In the early weeks of the semester, I showed up with my visibly disabled body—scrawny legs resting on the footplate of my wheelchair—lesson plans lined up, eager to pour all the knowledge into their young brains. My enthusiasm was checked by an overwhelming sense of apathy. I was stunned when students couldn’t immediately fathom how studying disability literature might be worth their time.
Every weekday since the start of September we’ve been reading stories and watching films that include characters with bodies and minds that don’t fit typical expectations for “normal,” and I ask, “What does it mean that this character would rather die than live in his impaired body? Can you think of an example of disabled characters in successful, romantic relationships? No? What are the broader implications of these representations?” These kids were born into the twenty-first century. They’ve known that diversity is good and discrimination is bad since they were babies. Yeah, yeah, yeah, we get it. Don’t be mean to disabled people! We should all be equal! But can these ideas possibly feel more tangible or pressing to them than points on a presentation slide?
They know the “right” answers before I ask the questions, but how do we get to the territory beyond the “right” answers?—how do we step into the space of another person’s breathtaking experience?—how do we absorb the sharp pain that comes when someone believes through their spine and into their digits that they do not belong? I wish it were possible to take my high school seniors on a field trip to Manhattan, Kansas, in 1992. They’d file down the stairs of our early-twentieth-century house into the musty basement and find my six-year-old self curled up on the threadbare burgundy velvet sofa, watching my grandma’s VHS-taped soap operas. My legs are strapped into clunky metal braces with brown velcro, and my knees are scabby from crawling around the neighborhood. As I sit on that sofa in the basement, picking at my scabs, eyes glued to the sexy scenes of As the World Turns, I learn which bodies are desirable. As I grow up, every piece of storytelling, from the news to ads in magazines to The Little Mermaid, teaches me where my lopsided body fits. Without asking questions, my little brain observes; thousands upon thousands of images of love and femininity, romance and success, motherhood and power, independence and adulthood flash across my developing brain, and none of them look like me. I wonder if my students would be able to track my growing shame, watch me slowly disappear, more and more disconnected from the world and myself.
By the time I reached adolescence, I had no idea how to imagine myself as any kind of successful adult. There’s an eerie entry in my thirteen-year-old diary, where I describe my future. I wrote pages of tedious details painting a picture of myself in my early twenties. In this world, I lived in a very chic apartment and had a high-pressure but creatively fulfilling job, amazing hair, and a boyfriend I named Nathan, who took me out to dinner and made me sweet-smelling bubble baths.
Theorists, writers, artists, and activists that have flipped my world
Sue Austin Multimedia artist who makes stunning videos of scuba diving in her wheelchair. Watch her TED Talk video, “Deep Sea Diving . . . in a Wheelchair,” for a glimpse of her work.
Eli Clare Author of Exile and Pride. Storyteller, activist, theorist, and poet who explores the intersections of disability, race, gender, sexuality, and class.
Erin Clark Self-created sex-icon, artist, and wheelchair pole-dancer, Erin writes and takes selfies that document her larger-than-life existence. @erinunleashes
Katherine Dunn Author of Geek Love, which flips traditional hierarchies, crafting a world where circus freaks have all the power.
Rosemarie Garland-Thomson Author of Extraordinary Bodies. One of the founding voices in disability studies.
Lucy Grealy Author of Autobiography of a Face. American poet and memoirist who wrote the story of her lifelong pursuit to correct her facial deformities through reconstructive surgeries.
Sonya Huber Author of Pain Woman Takes Your Keys. Disabled creative nonfiction writer and professor who turns her chronic pain into lyric essays.
Alison Kafer Author of Feminist, Queer, Crip. Theorist who writes stunning prose critically examining the relationship between disability and pop culture, current social and political events, and theoretical constructs.
Bhavna Mehta Visual artist who creates paper and embroidery sculptures around disabled bodies. @bhavnaumehta
Aimee Mullins Athlete, supermodel, and activist who navigates the world on two prosthetic legs and sees her physical impairment as an opportunity for imagination. Her TED Talks, “The Opportunity of Adversity” and “My Twelve Pairs of Legs,” are worth watching.
Susan Nussbaum Author of Good Kings, Bad Kings, one of the only pieces of fiction narrated by a collection of disabled characters.
Annie Segarra Artist, activist, YouTuber, and creator of the “The Future Is Accessible” T-shirt line. @annieelainey
Andrew Solomon Author of Far from the Tree. Nonfiction writer and activist who follows his own open-handed curiosity to explore the intersections between marginalized identities.
Annika Victoria Vivacious, disabled, twentysomething artist who blogs and YouTubes about life and her creative projects: annikavictoria.com @littlepineneedle
Eleanor Wheeler Teenage activist and creator of the We Exist Collective. @elliewheels
Stella Young Revolutionary activist who coined the concept of “inspiration porn” in her TED Talk video, “I’m Not Your Inspiration, Thank You Very Much.”
One unaccountable detail in this imagined world is that I am living this posh life with a nondisabled body.
No wheelchairs or braces or feet dragging or accessible transportation or housing accommodations appear anywhere. In fact, the opposite is true. My body fits perfectly into the able-bodied world. I visualized a future body that could slide right into the scenes of adulthood I’d seen performed by Jennifer Aniston or Julia Roberts or Meg Ryan. But imagining my body as gracefully walking makes about as much sense as picturing my future self as a bird or a houseplant. This had never and would never be a part of my future, but this is the picture I sketched. Why? I wonder: did I not know how to imagine my disabled body into the narratives I found the most enticing? I wanted love and beauty and excitement and fulfillment—all of it—and I didn’t see my body creating that kind of life.
How do you explain the power of seeing your own unique form represented in a story to people who’ve never felt the comprehensive absence of it? No matter how tightly I squinted my eyes, I couldn’t see myself becoming any kind of acceptable adult. It sounds dramatic, doesn’t it? But I didn’t know what kind of work my body could do, how I would find a place to live where I could navigate on my own, how I’d ever afford the insurance to pay for my medical expenses, who would ever be willing to love me. The pieces that seemed automatic, essential, assumed for everyone else seemed impossibly out of reach for me. I’m guessing that when you grow up surrounded by stories that reflect you, it’s easier to believe that your dreams for yourself are entirely your own. Why would you notice that the path is already paved when your journey across it is so smooth? By the time I was twenty-two, I’d married the first boy who had shown interest in me, dropped out of school, and given up on any vision for the unique contribution I might bring to the world. As I saw it, being taken care of by a person willing to marry me—a person I loved as a friend, if not as a partner—was the only way I could survive.
We need representation for disabled people for the benefit of those same people, but it’s more than that, too. A couple of weeks ago, a few of my students did presentations on the history of institutionalizing disabled people. They described the practice of relegating these bodies into faraway buildings where we could close the door and forget they existed—a collective physical erasure of an entire group. We’ve exiled these voices from our stories, too—blotted out a vibrant part of our humanity. When I push for more disability representation, part of my motive stems from a desire for disabled people to see themselves as valid participants in culture. But nondisabled people need these stories, too.
A fundamental piece of our human experience is missing when disabled stories are ignored.
These stories are a part of us, whether we acknowledge them or not—they add texture and depth, curiosity and nuance to our understanding of what it means to live a human life on this planet. We are all in desperate need of these stories. All of us.
So, how do we step into this unexplored space? How do we understand the power of representation and begin to feel the weight of its absence? Over the past few months, my students and I have been paying attention. We call out the absence of representation, and we identify where it’s skewed. We find the counter-narratives, and we take note. Or, this is what I hope we do. The curiosity, the urgency, has not yet caught us all. But as I assign the work, as we push through the motions each day, as we examine the stories, pay attention, open our minds, and listen, I’m seeing us change—ideas click into place—bit by little bit. This is the power of stepping into stories and tuning in to the voices that have been hushed. If you’re interested in doing this kind of work, too, I’ve included on page 165 a messy pile of resources that have changed me in one way or another. Some of this we’ve read/watched as a class, and the rest of it I wish we had time to read/watch as a class. My hope is that as we seek out these voices and draw them into our minds and communities, their insights will wash over us, change the way we look at, evaluate, and categorize each other, prompting us to question our methods of determining human worth. I believe there is a better—a kinder, more supportive, creative—version of us out there, and listening to these voices is one way to get there.
artwork and poem by Areeba Siddique