Another common trope affirms that disabled characters are always longing for a “whole” body through a fantasy sequence—a moment of respite from the burden of disability to relish a “pure,” working body, even just for an imaginary moment. Fox’s celebrated Glee includes the scene where Artie (Kevin McHale) jumps out of his wheelchair for a full dance sequence; James Marsh’s 2014 Academy Award–winning film The Theory of Everything shows Stephen Hawking (Eddie Redmayne) getting out of his wheelchair to walk across the floor and pick up a woman’s fallen pen; Guillermo del Toro’s gorgeous 2017 Academy Award–winning film The Shape of Water includes a musical number during which our mute protagonist Elisa (Sally Hawkins) is suddenly able to sing her heart out. With each fantasy sequence, time slows down, and the characters exit the confines of their ordinary lives for an alternate paradise where everything is finally made right—the lighting changes, the music swells, and the viewers are able to take a deep breath and bask in a vision of the way things are supposed to be.
The fantasy sequences depicted on the screen feel so distorted from reality that it took me some time to even recognize the possible overlap with my own thirteen-year-old fantasy sequence scribbled into my diary. How is my vision of a future, walking self any different from Eddie Redmayne playing an aging Stephen Hawking, lifting himself up from his wheelchair to pick up a pen on the floor? The fantasy is held up as some kind of culminating, heart-throbbing moment to capture this character’s deepest longing—if only, it whispers, hand clutching heart. The amount of screen time, the tone of the music, the altered lighting place these moments on a pedestal that hardly seems comparable to my very ordinary, fleeting childhood daydreams.
More than anything, I see one fundamental difference between these on-screen fantasies and my thirteen-year-old musings—my diary dream wasn’t wrapped up in having legs that obeyed my every order. I just wanted the kind of story that seemed exclusively available to nondisabled women. I wanted a fun, challenging job. A boyfriend. A cool apartment. I didn’t know the girl in the paralyzed body could have that. My fantasy sequence was caught up in a complex social context—a tiny fluff of a moment in the great scope of my life navigating an ableist world. It wasn’t about my legs. Nondisabled storytellers don’t seem to get that.
This idea that disabled people exist with one sole desire, one holy passion, one desperate fixation on an able body, is overemphasized and obsessively repeated. This doesn’t mean there aren’t any disabled people who want cures; even people who are pretty content in their disabled bodies sometimes wonder about life with a different body. But it often consumes the character’s entire purpose in the plot, with very few alternate narratives to complicate or counter it. It’s an old, uninformed, one-dimensional read on disability that burns on the stinky fuel of nondisabled fears.
Maybe one of the most striking, blatant distortions of disability was brought to us by the nondisabled television personality Kylie Jenner in her 2016 photo shoot featured on the cover of Interview. Dressed in a black leather bustier and stiletto heels, Jenner sits in a gilded wheelchair with a posture some described as resembling a lifeless sex doll. Jenner’s image depicts disability as purely passive, as if her wheelchair is her cage, when in real life, wheelchairs are empowering, liberating tools for so many people. More than anything, I’m amazed by just how many people cosigned this project. Every detail of this image from the early days of its conception to the final execution was curated and crafted by a team of editors, stylists, and photographers. It passed through so many potential gatekeepers who apparently didn’t consider what this photo shoot said about the real experiences of actual disabled bodies.
It makes perfect sense, though. Disability appears on screens and magazine pages like an unfamiliar puppet version of real life, because the team telling these stories—the writers, directors, and actors—are almost always only guessing at the reality. They’re fumbling in the dark, observing from a distance, trying to make sense of something with their imaginations alone. I’m not interested in making rigid rules—actors may only represent experiences they’ve lived!—but it’s important to look at the very loud, destructive, default pattern that has been in the works for years. Disabled folks appear everywhere in our stories but are almost completely rejected from writing rooms, directors’ chairs, and acting gigs. The ones being represented are not consulted or included.
The semester I watched Me Before You with my students in the disability and literature class, I was stunned by their reactions to the film. When I gasped in horror, they gushed and cooed at the sweet love story. I felt a profound disconnect between our viewing experiences, and I didn’t know how to fill the gap. They watched the man in a wheelchair move across the screen, watched him fall in love, watched him decide to end his life—and the images didn’t scrape the same tender wounds. They couldn’t see what I saw, couldn’t feel what I felt. How do you invite another person into a lifetime of moments—a million tiny stings? How do you translate the sharp pain that comes from seeing your secret fears confirmed—that your life really is a tragedy? What words do you choose to communicate the weight of believing—through your spine and into your digits—that you don’t belong?
I wish it were possible to take my high school seniors on a field trip to the suburbs of Overland Park, Kansas, in 1999. We’d file down the wrinkled carpet of the narrow hallway to my bedroom and find thirteen-year-old me sprawled across my bed, surrounded by magazine cutouts of airbrushed models. My atrophied legs don’t match my muscly arms, my rib cage shapes an asymmetrical trunk, and my knees are scabby from falls and bumps. As I record my dreams in my Anne Geddes diary, they’re filtered through the hundreds of vivid stories I’ve absorbed by my thirteenth year.
On this impossible field trip, we’d take a tour of my earliest memories sitting on the couch in front of The Little Mermaid and binge-watching my grandma’s recorded stash of As the World Turns ; we’d observe as I watch hours upon hours of music videos on MTV and every John Hughes film; we’d study my late-nineties obsession with the Spice Girls and Christy Turlington, and we’d chart exactly where I learn which bodies are desirable and which are not, which stories are brought to the center and which are pushed to the margins, who belongs and who doesn’t.
I’d point out to them that in my earliest consumption of the stories around me, I instinctually assumed that my story belonged with all the other Real Citizens of Life. Why wouldn’t it? I felt like I belonged at the center of my own story. I saw myself alongside Claire Danes and the Olsen twins and Sarah Michelle Gellar. The more time I spent out in the world, though, the harder it was to see myself in that light.
Then we’d travel back to the morning I start kindergarten, and they’d watch as a short yellow school bus pulls up to our house. They’d watch my face when I get on and find myself surrounded by a group of people I don’t recognize. I’d expected to ride the bus with the kids I knew would be in my class. Am I on the right bus? What universe am I in? But this was the bus designated for the disabled kids, I learned—kids I’d never met and didn’t go to school with. Even by the tender age of six, thousands of images of love and femininity, romance and success, independence and power had flashed across my developing brain. None of them looked like this scene before me on the bus, but apparently this was my story.
If my students and I could take this field trip and observe it all unfolding from a distance, I wonder whether they’d 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 the age of my students, my diary offered a snapshot of a mind developing in a world that hadn’t made space for it. Just like my imagined future with a boy named Nathan and legs that could walk up stairs, I visualized a future body that could slide right into the scenes of adulthood I’d seen performed by Julia Roberts and Meg Ryan. In a world without any pictures pairing success and wheelchairs, cute boyfriends and paralyzed legs, glamour and disabilities, I didn’t know how to
imagine my disabled body into the stories I found enticing. I knew I was real, knew I had a story to live, knew I wanted love and beauty, excitement and fulfillment—I just needed the body to match.
A lack of representation shaped my perception of a possible future abstractly and broadly but also tangibly and specifically. In a very practical sense, I didn’t know what it looked like for a body like mine to be physically intimate with another body—how would we hold hands as we strolled down the street together? How would we embrace at the airport after a long absence? How would we tumble into bed together? I didn’t know how a stylish, accessible home looked—what do I do with all that cupboard space I can’t reach? What about rugs that catch on my wheels? How do I gracefully carry a coffee cup from my kitchen to my living room without making a giant mess? I didn’t know what kind of job I could have—could I really be a teacher? What would it look like for me to command the attention of a classroom when I sit so low to the ground? These are all things I’ve figured out (mostly—I still spill a lot of coffee), but none of them was shown to me first. So much of my adulthood—from the big dream to the gritty mechanics—has been about starting from scratch, building from the ground up, and adapting as I go.
I live in a culture that uses my form as a symbol, a shorthand, an illustration for something else—weakness, captivity, and victimization or super strength, triumph, and feel-good inspiration. Even if I do claim a narrative all my own, when I go out in public, I can feel others’ stories written all over my body—stories I didn’t and would never choose for myself. I feel like I’m speaking the same language but somehow my words get pulled and picked and sorted until they fit into someone else’s narrative. Our stories continually reduce disability into something small—a trinket to manipulate—as if an experience as sweeping, rambling, layered, contradictory, ordinary, vibrant, and human as disability could be reduced to something so one-dimensional.
And in case this isn’t clear, let me emphasize: more is at stake than hurt feelings, irritations, and misunderstandings. Stories written about marginalized people embed themselves in our culture and are used to justify our politics, to arrange our school systems, to determine a hospital’s budget. They enter our private homes, follow us into libraries, classrooms, airports, restaurants, courthouses, swimming pools, doctors’ offices, churches, bars—these skewed, melodramatic narratives shape our cities, our communities, our social interactions. They precede us, follow us, and are almost impossible to shake. When we arrive at job interviews, go to the grocery store, show up at a fertility clinic or adoption agency, create online dating profiles, get pulled over by police, entrust our bodies to medical professionals, pick up our kids from school, enter a place of worship, we are moving through a world where our image is shorthand for something incompetent or unreliable, helpless or dangerous, not worth living or inherently wrong, sinful or contagious, impotent or taboo, perverted or sexless. And these manifest into tangible results from neglect to hate crimes, condescending laughter to sexual assault, unwelcome prayers to exorcisms, pity to assisted suicides, infantilization to police violence, dismissal to invasive medical procedures, familial rejection to domestic violence, idolization to social isolation.
I get it—movies are entertainment. But these stories connect to thousands upon thousands of personal, painful stories clustered under a very real oppressive social structure backed by the momentum of hundreds of years.
So, yes, let’s agree that disabled people are an essential, vibrant part of our world, and they deserve to be treated as such. But if we stop the conversation here—if we think this is all there is—we haven’t moved much farther than the “right” answer—Diversity and inclusion are good! Don’t be mean to disabled people! Inclusion isn’t better just because it’s kinder. We should bring disabled perspectives to the center because these perspectives create a world that is more imaginative, more flexible, more sustainable, more dynamic and vibrant for everyone who lives in a body.
The undeniable fact is that we all have bodies that make messes, fluctuate in size, cramp and bloat, rebel and disobey, break and heal, break again and heal all wonky, hurt and age, speak to us, work for us, get tired, grieve, and rejoice—but mainstream narratives tell us that our bodies aren’t that complex. They exist in the extremes: thin women who eat greasy cheeseburgers every day but never gain an ounce, badass fighters who roll over the hoods of cars with ease, couples who have simultaneous orgasms in positions anatomically impossible for real sex—or, bodies that are devastatingly sick, only fat, and entirely broken. How many of us see ourselves reflected here? Our actual experiences exist in the thousands of spaces between.
Disabled bodies have always been a part of our collective story, whether we acknowledge it or not—and right now, they’re a largely untapped reservoir, waiting to add texture and depth, new jokes and plotlines, curiosity and nuance, adaptability and access to our understanding of what it means to live together on this planet. As we reach for narratives that test the boundaries of identity and reimagine the expectations of gender, race, and sexuality, disability is ready to contribute to a conversation that challenges old paradigms and asks new questions about what it means—what it could mean—to be human.
Disability can give us new stories for navigating an ever-changing world. New stories like: Maybe hard work has its limits. Maybe your efforts aren’t the best barometer for predicting your successes. Maybe the state of your body isn’t actually the ticket to happiness. Maybe when someone’s difference scares you, that’s the precise moment to lean in, shut up, and listen. Maybe true love can be tender and caring and steady. Maybe some shit just happens, and it’s not for a greater good, but maybe you’ll find a way to be okay anyway. Maybe there aren’t happy endings, maybe life is more like a bowl of soup flavored with contentment and angst, victories and heartbreaks, joys and defeats, rage and peace, and maybe it’s a special thing when you get to share that soup with anyone. We don’t want to include disabled perspectives just because it’s nice or fair to the “handicapped” people. We want to weave these stories into the collection, we want to consider disabled folks as worthy of their own, ordinary storylines, because without them, we are less robust, less flexible, and less equipped for the ride we’re already on.
So, yes, representation is nothing short of everything.
5
The Price of Your Body
Tim Taussig got his first job as a bank teller when he was twenty-one years old. He’d just married my mom a few weeks before, and with his early earnings, he purchased a trailer that spanned eight feet by thirty-four feet (counting the hitch). He worked as an employee of this bank for the next forty-three years and eight months. Every single morning I lived with him, from my infancy to adulthood, my dad rose at 4:30 in the morning. He threw on his clothes, sometimes in his sleep, and took a prayer walk through our neighborhood, regardless of snow, rain, or whether or not his babies had been up all night. He came home, took a shower, ate a disgustingly healthy breakfast, combed his hair to the side, put on his suit, and was on his way to the bus that would take him to work by 6:13 (a bus he never missed once). He worked in his office all day, five days a week. No heading in late to work or taking an early afternoon off. I think the man took half a sick day in his entire career, and then, only when his body was protesting with a high fever and hacking lungs. My mom was sure he was dying. Why else would he stay home? He returned each night at 6:17 in time for dinner with his wife and six kids. His unflagging routine felt more constant than the trees growing in our yard or the beams holding up our house.
I watched all this carefully and with growing awe. When I was little, I would wait for him in the front yard, practicing dance routines with my walker as the minutes ticked closer to his return home. As I got older, I’d stir when I heard him leaving the house. I could see the pitch-black night through my curtains. I’d turn over in my bed, and as I fell back asleep, I wondered how he managed to operate in a world where nighttime is your morning. I never w
anted him to know how late I’d slept in on a Saturday. When I bumped into him in the kitchen, his T-shirt sweaty from his just having mowed the lawn or his arms full of grocery bags, I’d pretend I’d been up for hours—I had only stayed in bed because I was reading. No decent person would sleep away that much of the day!
While my dad continued his rigid, unwavering routine, I started to miss more and more school. When my CD alarm clock started to blare the A Walk to Remember soundtrack at 7 in the morning, I was exhausted and anxious. Lifting my head felt like swimming across a freezing lake. At least once a week, there was a day when I wasn’t sure I could manage to get dressed, let alone sit through seven classes. I started to fall behind in school, and the more behind I got, the more I fantasized about living in a cave. I’d pull my comforter over my head and pretend I lived in deep dark solitude. I didn’t see a clear or easy reason for these patterns. I didn’t have the flu or strep throat or cancer. I just felt ill-equipped for the task at hand.
In the second month of my freshman year of high school, my school counselor called me into her office because I’d been missing so many days of school. “So what’s going on?” she asked me. I don’t remember her tone, but I know I received it as accusatory. Before she’d finished her question, hot tears were spilling down my cheeks faster than I could wipe them up. “I don’t . . . I . . .” The words caught in my chest. I struggled to push them out of my mouth, to take a deep breath. I could hear myself gasping, hear her telling me to breathe, just breathe. She sounded far away, like she was mumbling to me from the next room. My own voice was so much louder—it sounded frantic and high-pitched, but my rational mind couldn’t figure out why. Stop it! Get in line! Just calm down and do the things! I felt furious with myself for failing to keep up, to manage the basic tasks all my peers seemed so able to handle. I don’t remember any of the words I managed to get out, but the counselor talked with my parents, and together they decided I should drop two of my classes and finish out high school with an adapted schedule. I was so relieved, and so ashamed.
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