Sitting Pretty

by Rebekah Taussig

  One elaborate fantasy sequence is recorded in my Anne Geddes diary. Here are the basic details of my thirteen-year-old dream world: I have long shiny hair. I live by myself in an apartment with every hair and makeup product I’ve ever wanted, including spray lotion and yummy-smelling shampoo that costs lots of money. I have a wardrobe of classy pencil skirts and silky blouses for my job. I work in some office overlooking a nondescript city doing something creative that keeps me very busy in a fulfilling sort of way. I have a boyfriend named Nathan who calls me to see whether I can get away from the office for a quick lunch, but I’m just too busy with a series of vague projects, so instead he offers to take me to dinner (the fancy kind, of course). I’m late to dinner, because I’m just so busy and important, but Nathan waits anyway, because he just loves me so much. We have an imprecise kind of fun at dinner, and then Nathan drops me off at home with a Bath & Body Works bag of products that I go use—alone?

  In every scene, there is one doozy of a detail: my body has no trace of disability. Through all of this, Adult Rebekah walks gracefully down the street and up the stairs to her chic apartment.

  Perhaps most striking to me about this fantasy is that it never ever struck me as silly or unrealistic to erase the fundamental mechanics of the body in which I lived. At thirteen, I was already permanently disabled, and yet I felt compelled to leap over this unchanging fact so I could dream up a life of fulfilling work and male adoration. Why?

  Without having the words at the time, this was the universe as I had come to understand it: On the one hand, there were the Real Citizens of Life—the ones this whole planet was built for, who were beautiful and capable and desired. They were the ones who fell in love and had careers and families and dramas at school and stories worth knowing. They were worthy of jealousy, love songs, and starring roles. I knew who they were, because their images flooded every screen, every magazine page, every billboard, every CD cover. They populated the sitcoms, movies, and music videos. They were the cast of Saved by the Bell, Friends, and Dawson’s Creek. They were the Spice Girls and the Backstreet Boys. They were Jack and Rose, Allie and Noah. And then there was me.

  I internalized my role early and continued to be reminded of it with consistent reinforcement. With experience and time, I learned that the best I had to offer society was to inspire the Real Citizens of Life by smiling on the sidelines, being joyful despite my wheelchair. I was a tool for keeping them grateful and motivated to seize their days. I was here to teach them the loftier nuggets of wisdom, like how to live life to the fullest—to provide an opportunity to prove that they were really a good character. I wasn’t here to fall in love, become a parent, broker the deal, crack the case, offer sex appeal, save the damsel, or be president. If I forgot my part—even for a moment—or attempted to audition for another position in the story, there was always another character there to nudge me back to that little piece of tape on the stage marking my spot.

  As I’ve gotten older, I can see it even more clearly—the elaborate stage performance with assigned roles that we, as a culture, perform together. For most of us, we learn how to play our parts as we go along. We pay attention to cues, we watch how the other characters interact with us, we see what happens when we step outside of our designated roles, and soon, we learn the precise parameters of the characters we play in this story. Some of us get parts as the Real Citizens of Life, and we strive very hard to hold on to these sparkly roles, terrified of losing our positions, or anxious we’re about to be discovered as frauds. Or some of us hardly realize the role has been handed to us at all. What other part would we play? Most are denied these prominent roles and are sent immediately to the margins.

  For a good while I really did think I was the only one on the outside. It took some time to realize that others—many others—were there with me. For those of us playing secondary characters, we learn to fit in tiny boxes where we try our best to live without letting our arms dangle too far over the sides.

  When I was about seventeen years old with a freshly laminated driver’s license and a new (to me) 1993 white Buick Century spruced up with simple hand controls, I drove myself to the bookstore. With practiced ease I swung my wheelchair out of the car, attached the wheels, bounced into it, and felt capable and breezy as I pushed myself across the parking lot toward the front doors. When I arrived, a man and woman were already opening the first set of doors to the shop. I thanked them as I moved toward the second set of doors, naturally arriving first. Happily, I opened the second set of doors for them, reciprocating the courtesy I had just been given. As the couple walked through, I heard the woman mutter, not too quietly, “She’s a proud little thing, isn’t she.” I felt the sting and heard myself laugh with surprise. What was that? Even before I had the words, I knew: I had stepped out of line. Silly me! I’d been operating under the belief that I could be the newly independent leading lady, brightly bounding through her story, but I’d already been assigned my role as the Weak Girl, here to affirm to the Real Citizens of Life that they were a thoughtful pair offering a friendly hand.

  In my late twenties, I moved into a little house with two cranky cats, and Micah moved in shortly after. Maybe a year later, after seeing us do life together month after month, my neighbor stopped us on our way out to the movies. “So, I have to ask. Are you two brother and sister?” He seemed genuinely puzzled, which I suppose makes sense, considering he’d seen us holding hands, kissing, and flirting for the previous twelve months. As I’d been busy living out my life as the star of my own romance story, he’d been busy trying to figure out what narrative made more sense: the Helpless Asexual Girl with a boyfriend, or two siblings in love. How far must he stretch his imagination to see me and my chair as a legitimate romantic interest? It seems it was hardly fathomable to him. I took a beat, tilted my head, and looked back at him. “No,” I said, amused and not laughing. “He’s not my brother.”

  During the last year of graduate school, I traveled a lot. Near the end of a road trip culminating in a visit to Albuquerque where I presented my work at a professional conference, I’d driven 2,681 miles across the country. I’d rented cars (always taking the three extra steps required to book one with hand controls), booked hotels, put gas in my vehicles with my own money, and presented my original work to people who cared to listen. (To be perfectly honest, the room wasn’t packed, but you better believe I gave the most animated talk.) I’d found my way around unfamiliar cities and felt my abilities stretch and hold me. As I was filling up a soda on my last stop, on my very last leg of my trip, I was feeling grounded and unstoppable—the star of a story about hard-earned professional fulfillment and personal peace on a solo road trip across the United States. This is also the precise moment a man I didn’t know pushed a wad of ones and fives into my lap. “I was in a wheelchair for two years,” he said. “I know what it’s like.” I looked at his bills, bewildered. Suddenly I was the Begging Cripple of this story, useless and desperate. “No. No, I don’t feel comfortable,” I said, pushing the money away. He kept talking, explaining just how much he understood, how he wanted to help people like me. His confidence in the story he was telling was louder than any other noise in the building. He was intimately familiar with the Begging Cripple role and stood tall in his part as the Compassionate Helper. Meanwhile, my brain turned into a flat white screen, searing and blank. I got back in my car, feeling so small.

  It is a fact that a person with a disability is significantly less likely to be gainfully employed. This represents the lived experience of millions of people. But there are other ways to tell this story, other possible turns this script could take, other scenes waiting to be written. As much as I felt strong and unstoppable on that road trip, I felt just as deflated by the never-ending brawl required to maintain a sense of dignity belonging to a group that is perpetually framed as helpless.

  Here’s a question: What’s more exhausting—being disabled or trying to shake off the roles that other people constantly expect you to fill? (I
’m too tired to answer.)

  Disabled people have been assigned a clear part in the stage performance. We are the recipients of help, in need of assistance, holding out a tin can for charity, here to inspire. Attempting to claim another role, a more complicated part, like the one who accepts and offers a bit of help, one who uses a chair to navigate the world and has sex, one who can’t walk and isn’t asking for your money—even if it’s a role that feels natural and fitting—can surprise, confuse, or even irritate the other people in the performance.

  When you live inside of the story, it can be difficult to see this dynamic. We begin to believe things like “this is just how it is—this is how the world works, like hydrogen bonds or gravity,” forgetting that, while the very first authors of ableism may be long gone (whoever they were), we are still performing these outdated roles and—guess what?!—stories can change.

  One of the spaces where we already and actively workshop these narratives is in the stories we tell on screens, through speakers, and on pages. We’re currently in a time of great revision. We’re opening our eyes to the limited scope of our previous stories and realizing there are way more voices to amplify in our narratives. Things have changed a lot since I was thirteen. It used to be assumed that movies, television, stand-up comedy, and advertising would feature a narrow, celebrated swath of our population, but there’s been a slow shift away from that in the past decade or so. The Clint Eastwoods, Tom Cruises, and Matt Damons are no longer the only ones occupying our screens. Films like Black Panther, Get Out, BlacKkKlansman, and Crazy Rich Asians show that people are excited about good stories told with casts made up of nonwhite folks—and the box office sales and award show wins cosign this shift. While there is plenty of pushback—like men furious at the all-women cast of the 2016 version of Ghostbusters for so violently ripping apart their nostalgic memories from their mini-misogynistic childhoods—films like Ocean’s 8 and Captain Marvel demonstrate a continued investment to disrupt some of the most male-dominated franchises.

  At the very least, the capitalist wheels of society have recognized that diversity sells. More people are gravitating toward inclusion, and where the people flock, so flocketh the money. Millennials and Gen Zers have proved that they are more likely to choose a brand that demonstrates a commitment to inclusivity, and so, in a matter of years, we’ve seen countless brands move in that direction. From Nike to Nine West, Snickers to Crocs, Tylenol to Sephora, more and more companies are choosing to feature the bodies and storylines of people of all sizes, shapes, backgrounds, abilities, gender expressions, skin pigmentations, sexualities, and ethnicities. For some advertising campaigns, like Billie razors and Aerie underwear, this includes so-called body flaws, like stretch marks and body hair. More companies are committing to minimizing or doing away with photoshopping models in their ads, including Dove and CVS. And this inclusivity isn’t always limited to glossy ad pages. Target launched lines of adaptive clothing and “sensory-friendly” home items, including products like weighted blankets and cocoon seats for kids with a range of sensory needs. Microsoft came out with an adaptable Xbox controller that doesn’t demand the same fine-motor precision of previous controllers.

  So, wow, right? Look at all that big, bright, gorgeous, messy, real representation of humanity! Inclusivity is where it’s at, the wave of the future, the place to be. But instead of checking the box on diversity (done!), this hard-earned progress only leads to more questions and considerations.

  Mindy Kaling’s film Late Night gives a brilliant snapshot of disability and storytelling today. It has the gloss and beat of a romantic comedy, but it tells the story of two women in the first and final acts of their careers, ultimately working to make the entertainment industry more inclusive. Kaling’s character, Molly Patel, is a South Asian–American woman who finds herself working with a team of all-white, all-male writers on a late-night show hosted by Emma Thompson’s character, Katherine Newbury. Molly shows up in the writing room with a fresh diagnosis for the show’s growing staleness over the previous decade. She offers new jokes. She calls Katherine to a brave authenticity other writers aimed to erase. What a beautiful illustration of the ways inclusivity makes us richer, smarter, fuller, better. I’m here for this.

  At the film’s end, the camera pans across the new writers’ room that Molly and Katherine assemble. In stark contrast to the film’s early scenes, only like three white dudes are left at the table. The new working space is bursting with vibrant diversity.

  Also: I didn’t see a single disabled body at that table. What a stark reminder that even those most dedicated to inclusion rarely imagine disabled people into the scene.

  Of course, disability is often invisible—present without an obvious signal or quick recognition. Many people with disabilities “pass” as nondisabled. In other words, it’s possible that disability is still part of the imagined inclusive space in the final scene of Late Night. But I don’t think it was on the radar for any of the writers, directors, producers, or performers of the film, because (1) the scene is full of people who are visibly pushing against the white/male status quo, and (2) the story does include one disabled character who plays a very different role in the story—Katherine’s supportive, behind-the-scenes, heart-breakingly sick husband Walter (played by John Lithgow). Walter is a quiet and steady support to his wife (yay!), plays piano alone in the back room during his wife’s glamorous party, and is quite unhappy about the deteriorating state of his body as he ages with Parkinson’s disease. He’s sweet and sad with a splash of victim.

  There’s nothing inherently awful about including this kind of character in a story about two strong women. This film isn’t about husbands, and it’s not about disability, and that’s okay. But Walter’s character and the final scene of the film reveal a whole staff of story-makers who agree that this, right here, is what vibrant, exciting, worthwhile inclusion looks like, and that, over there, is what disability looks like. The two are kept separate, a reality that reveals a team of skilled, educated, informed story-makers entirely unaware of disability as an identity that has something valuable to contribute—an identity worth explicitly inviting to the table.

  It might slip under the radar or exist on the edges, but disability is actually ev-er-y-where in the stories around us. It’s often used as a metaphor (Mr. Potter in It’s a Wonderful Life, Colin in The Secret Garden), as a plot device (Raymond in Rain Man, Melvin Udall in As Good as It Gets), or as a tool to inspire compassion, pity, or “softness” in nondisabled characters and audiences (Tiny Tim in A Christmas Carol, Joseph Merrick in The Elephant Man). Characters with impairments are depicted as either “super-crips” triumphing over life’s adversities (Pollyanna and Forrest Gump) or pitiable, isolated victims who’d rather die than live in their impaired bodies (Maggie in Million Dollar Baby, Will in Me Before You). Oh, and sometimes we get to be villains (Captain Ahab, Captain Hook, Darth Vader) or thrown in the mix as objects to horrify (Doctor Poison in Wonder Woman, Ruben in Midsommar).

  This is not to dismiss the strides that have been made in mainstream representation; shows like Switched at Birth and Speechless do more to normalize the respective experiences of deafness and cerebral palsy than ostracize them, and characters on shows like CSI, Private Practice, and Stranger Things happen to have impairments (shared by the actors performing the roles) that play little part in their active contribution to the plotlines. In 2019, Netflix came out with a genuinely funny, charming miniseries, Special, about a gay man with cerebral palsy that is written and performed by the real-life protagonist of the story, Ryan O’Connell. Marvel just announced that one of its upcoming films, The Eternals, will include a deaf superhero played by the deaf actress Lauren Ridloff. These examples are worthy of celebration but still remain the exception. More often than not, the stories we tell about disability are sappy or eerie or melodramatic or frightening distortions of actual experience.

  It’s more pleasant to pretend this is a problem of the past, especially when looking
at clearly condescending or offensive portraits from earlier eras. But the skewed depictions of disability have only slipped into a twenty-first-century packaging that’s harder to see through.

  Let’s take a closer look at one of the most lucrative international box office hits in history. In James Cameron’s 2009 Academy Award–winning film Avatar, our hero, Jake Sully, is paralyzed during active duty with the Marines and is consumed with longing for freedom from his confinement. This reinforces the ableist belief that one surely cannot live a fulfilling life in a disabled body, especially when Jake’s character finds power and contentment only when he enters an alternate world that restores his abilities.

  To make this conversation even trickier, films doing powerful good for one group of people can simultaneously participate in reinforcing reductive stereotypes for another, as we see in Jordan Peele’s thoughtful, smart, and rightfully celebrated Get Out. Even as the film gives a searing portrayal of liberal racism in twenty-first-century America, it leans on a tired disability trope—the chilling blind villain who will commit atrocious acts just for the chance to see again. It strikes me as a shorthand prop—like a screaming tea kettle or a cloaked figure hiding in the shadows coming into focus—to get the viewer to feel something, only this trope uses a marginalized group of people for an effect.

  And this technique doesn’t seem to be losing popularity. Even Pokémon Detective Pikachu peddles this same narrative to children; the supervillain plaguing the city is an angry Bill Nighy in a wheelchair who recklessly manipulates and destroys, driven by a violent passion to restore his body to its original abilities. Poor Micah regretted sitting next to me in the movie theater as I whisper-yelled at the screen, “Learn how to tell a new story, you ableist toad pots! You’re a hundred years late! This is boring!”