Sitting Pretty

by Rebekah Taussig

  As feminism creates more space—as it evolves, expands, and grows in richness—I think it’s becoming less a conversation about men and women and more a force to disrupt the crustiest, most established power structures. This stronger feminism asks who has power and who doesn’t, where does that power come from, how do we disrupt the great disparity between the powerful and powerless, and what are alternate ways to access power while caring for each other? I think we sometimes make claims about the experiences of “all women,” because we live in a world that is so often dismissive of those on the margins of established power. These stories should be heard and amplified. But I also think there are many more stories to add to the collection we have started. Nuance is harder to rally around or shout from a megaphone, but it’s also sturdier and more sustainable. When we shout “Ask any woman!” I think we should. Ask. Listen. Adapt. Expand. It feels risky, I know. But so do swim parties.

  7

  The Complications of Kindness

  I am a magnet for kindness. Like the center of a black hole, my body attracts every good deed from across the expanse of the universe to the foot of my wheelchair. I move through parking lots and malls, farmers’ markets and airports, bookstores and buffets, and people scramble to my aid. They open doors and reach out their arms to help, they offer prayers, grab my handlebars for a push, watch over me, and hold out wads of cash.

  Okay, so not every single person who comes within my orbit suddenly sprints to my service. There are plenty of people who don’t seem to notice me, and some people who are actually repelled by my magnet. They look down, pull their bag or their child closer to them, draw their legs up to their chest as I roll by. (Yeah, it doesn’t feel great.) But it’s the abundance of kindness that gets me all tangled. It’s the fly that won’t stop buzzing, won’t hold still long enough for me to swat it, won’t die.

  It’s harmless, really. What damage can a tiny fly do? But then why do I feel like tearing down the house every time I hear its familiar buzz? And here’s the real nasty cherry on top of the fly: more than any other subject I write about, people do not like what I have to say about the complications of kindness. Because how could kindness be anything but good? What do I possibly want from the people if not kindness? And really, what kind of ungrateful hag must I be to complain about people trying to do nice things for me??? I’ve talked enough with folks to know—this conversation is uncomfortably disruptive.

  * * *

  As a culture, Americans are pretty well convinced that disability is something they’ve figured out. In fact, this was a puzzle solved years ago. How could ableism exist when we’ve memorized the rules? Don’t say the R-word; don’t make fun; disability doesn’t define anyone; just try to be helpful; and the rule that guides them all: Be kind. I’ve seen so many people perform these creeds in one form or another.

  Like the folks who try to do me a favor by keeping me separate from this disabled body of mine: All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair! I don’t think of you as disabled. It’s meant as a kindness, but it feels like erasure. These words handpicked to soothe the wounds of disability are weapons themselves, reinforcing the deep-seated belief that beauty and value can’t coexist with the deviations we all know I embody.

  I think I understand how it happens: If you live in a community where disability is framed as tragic, sad, and inferior, then claiming not to see that so-called defect feels like a favor. We try to extract the disability from the person, because we think disability is ugly, and the rules tell us that this separation is nice. But do we attempt to extract thinness, Ivy League education, or wealth from a person? Of course not. We see these characteristics as inherently positive. Maybe individuals hold on to these features as part of their identity, maybe they don’t, but as a culture, we don’t take it upon ourselves to graciously inform people that we see past their fit bodies, fancy diplomas, and piles of cash. There is no urgency to ignore thinness, no discomfort in recognizing education, no knee-jerk desire to erase wealth. Deep within our cultural understanding of what it means to be a human with a body, we position disability below ability and at odds with health, beauty, wholeness, success, and happiness. But I don’t need my paralyzed legs to be erased in order for me to be seen as able, healthy, beautiful, whole, successful, or happy.

  Time and time again, people in my life and readers of my work become uncomfortable with, ruffled by, and hostile to the stories I share about sitting on the receiving end of “kindness.” Maybe it’s because so many of us claim “kindness” as one of the most important qualities a human can possess. Disrupting our understanding of kindness is a direct threat to our sense of self and understanding of the world around us. But as a veteran Kindness Magnet, I’ve found people’s attempts to Be Kind can be anything from healing to humiliating, helpful to traumatic. It’s complicated.

  * * *

  At least eight times a day, I yank and throw, pull and twist my wheelchair in and out of my affectionately beat-up 2007 Toyota Corolla. After more than a decade of practice, the entire ordeal takes about thirty seconds. In my head, I make these familiar transfers with grace and badass agility, but the reactions of kind strangers suggest otherwise.

  On this particular day, I’m on my way into a coffee shop to grade papers. I’m assembling my chair like a wizard—I’m in the zone—when I hear a man yelling at me from across the parking lot. I tune him out. I’m used to pretending I don’t hear people calling after me in parking lots. It’s safe to assume he wants to help me, and I have decades of data to attest that he will not be able to make this routine even the slightest bit easier for me. I went through a phase in my early twenties when I used to let people try to help me. “Why not let them get that bright-smile boost that comes from playing the Good Samaritan?” I thought. But it usually took about six times as long to teach them the moves I could do so easily myself. My benevolence for my wannabe caregivers didn’t last very long.

  So I’m in the middle of putting my chair together, and I can still hear the man yelling across the parking lot. Now I’ve got the body of the chair on the pavement by the driver’s seat, and I’m reaching into the back seat for the first wheel. I’m swift and strong and capable. I’m sure it must look difficult for someone who’s never seen it, but I don’t falter. The wheel is firmly in my grip when my peripheral vision catches a glimpse of the man running toward me.

  “Don’t fall! Don’t fall, don’t fall!” he shouts. His hands are reaching toward me.

  I pause and stare at him. I’m indignant and amused. Why does he think I’m falling?

  “Oh, I’m fine!” I say. “See?” I pull the body of the chair upright and begin to slip the first wheel into position.

  The man sways on his feet, seemingly torn. I might look fine, but surely I’m not. “Ehhhh,” his face strains as he watches me. I quickly assemble the second wheel, flip the chair to face me, and stand up to transfer. “Ehhhh,” he groans again, and, as if he can’t restrain himself, he cries again, “Don’t fall!”

  I hop into my seat and grab my bags. I’ve lost my patience. I’m no longer trying to be pleasant. I’ve used my words and demonstrated through action: I’m fine. Why doesn’t he see that? He rushes to open the door for me. I roll my eyes.

  In my three decades of being disabled, the main messaging surrounding disabled people is that we’re supposed to Be Nice to them (or maybe, its close cousin, Don’t Be Mean). Regardless of our age, socioeconomic background, or education, we learn that disabled people need protection and assistance. If a disabled person is being made fun of, the Kind Person intervenes to say, “Stop that!” Or better yet, punches The Bully in the face and yells “Scram!” while The Bully scuttles away. The helpless disabled person becomes an opportunity for the Heroes and Villains to define themselves. If a Kind Person sees a disabled person struggling, they try to intervene. Offers their seat. Reaches out. (Especially if that disabled person isn’t begging for money on the street or asking for mo
re government funding to support their independence. Somehow these versions of help for the disabled tend to be categorized very differently from the cute little white woman in the parking lot of a Target putting her wheelchair into her car by herself.) One of my high school seniors articulated the feeling beautifully in one of our class discussions: “If I’m in public, and I ignore a disabled person who seems like they need help, I look like a dick. So I help, because I don’t want people to think I’m a horrible person.” From where I sit, he’s not the only one who feels this way.

  This is the power of the one-dimensional, deeply embedded, ableist script in our culture. Some bodies are Victims, others are Heroes. Some bodies need help, other bodies give help. We tell and retell these stories, and we feel really good when we do. Not only is this story common, it’s cherished, revered, beloved. Like royal weddings or animals of different species cuddling, we cannot get enough of stories that involve kindness and disability. I know this because of the internet.

  If you want to make a story go viral, find a disabled person and film yourself doing something really nice for them. (Okay, but don’t actually do it!) This precise formula works, again and again. There is a whole genre of sensational internet stories just about cheerleaders and football stars asking disabled kids to the prom. Go ahead, Google it—you’ll see: “High School Football Star Becomes Internet Sensation After Taking His Disabled Best Friend to Prom and Leading Her in a Slow Dance” (the Daily Mail), “This Student with a Disability Got Asked to the Prom in the Sweetest Way” (Buzzfeed), and “‘When Pigs Fly’: Girl Asks Boy with Special Needs to Prom” (NBC4). Apparently, we love this shit.

  In the summer of 2018, another story of kindness and disability exploded across the internet, appearing in sources from BBC News to the New York Times. In each retelling, we are brought into fifteen-year-old Clara Daly’s experience. She was sitting on a flight when she heard the call, “Does anyone know sign language?” She learned that the flight included a deaf and blind passenger, Tim Cook, and the airline staff had no way to communicate with him. Daly had started learning sign language about a year before, and as she signed words into his palm, she became the conduit between Cook and the rest of his surroundings, telling him the time, getting him water when he was thirsty, and chatting with him during the boredom of their flight. There are four photos snapped from their encounter that day taken by a passenger who posted the story to her Facebook page. Her post was shared hundreds of thousands of times within the week. In three of the four photos, the camera focuses on Daly. She is the star of the shot, the face our eyes are drawn to. These images reappear in every news article. Daly’s face is young and bright. Her blond hair and glowing cheeks look almost otherworldly under the light pouring in from the windows. Cook’s face is obscured. We see the back of his head, the side of his beard on the edge of the cropped photo. He’s presented as the side note, the shadow on the margins, the incidental object in the frame. The original viral Facebook post has since been taken down, but the author remembered the moment as a “beautiful reminder in this time of too much awfulness . . . that there are still good, good people who are willing to look out for each other.” Daly herself expressed bewilderment over the viral status of the story.

  In an interview with his local news station, Cook said he’s used to isolation and thanked Daly for reaching out to him. This detail added a sprinkling of heartbreak to the story and remained unexamined. The title of the article wasn’t “Deaf and Blind Man Sheds Light on Social Exclusion for Disabled Communities.” The article didn’t include a whiff of interest in solving the problem of disability stigma or social ostracism or even how to make airplanes more accessible for disabled folks. In fact, it seemed to hold tightly to the assumption that of course someone in this body would be isolated. More than anything, the actual events that unfolded were transformed into a gooey celebration of the forty-five minutes when one pretty girl talked with one disabled man on an airplane so that its readers could get the feeling of being wrapped in a hug. The whole world isn’t fucked! Thank god.

  I get it. The world is dark and scary, and we need more feel-good “news stories” to counteract the shitshow of current events. These news articles didn’t attempt to fix the problem of ableism, but are they really so bad? I mean, isn’t any form of reaching out, trying to help, being there for another person worth celebrating? The world is teeming with cruelty and hate—can’t we pause over the bits of kindness we find?

  But here’s the problem: we have ignored the perspectives, stories, and voices of disabled people for so long that their actual needs, feelings, and experiences are hardly acknowledged, let alone understood, at all. Our default impulses draw us firmly and consistently into the perspective of “able-bodied helpers.” We look through these people’s eyes so regularly, are so eager to identify with them, so ready to celebrate their generosity that we forget to ask even one of the many questions hovering around the disabled recipients of “help.” Like, how did this experience feel to you? Did you want anyone’s help? Was it even helpful? What needs did you actually have in this moment that remained ignored or misunderstood? What could be put into place that would anticipate this need so that you aren’t forced to be dependent on the kindness of a random stranger who may or may not be there next time? Did you know you were being filmed or photographed? Do you want those images shared? All over the entire internet? Did this moment make you feel like a spectacle? How many times have you been put in this position before?

  These kinds of articles and social media posts refuse to look at the big picture. They don’t unpack why there is such a social stigma around taking a disabled person to a school dance or why airlines will happily accept money from patrons like Tim Cook when they don’t have any plans in place for accommodating them. In their attempts to celebrate something that looks like kindness, articles and posts like this only reinforce an old, punishing story that keeps disabled people on the outside, at a distance, and in the background.

  * * *

  I’m about seventeen, and I’m taking a school bus to St. Louis for a weekend youth group trip along with my boyfriend Sam. We’re there as “leaders” for a group of middle schoolers, and twelve hours in, I’m already exhausted. We’re scheduled to walk through some touristy St. Louis caves. They’re clearly inaccessible, and I relish the thought of having an hour-long break.

  As the group lines up near the entrance of the tour, I casually mention that I’ll just meet them by the exit.

  “Bek! I’ll just carry you!” Sam says. Sam carries me a lot of places, and usually, it’s welcome and easy. There are places my wheelchair can’t go, and Sam’s body becomes an extension of my own as we roam beyond the “handicapped accessible” bounds. I like that about us. But this time, I’m tired. Also, I don’t give a shit about these caves.

  “Sam, it’s like a mile long in there,” I say. “Don’t be ridiculous.”

  “Aw, that’s nothing!” he says, flexing his biceps like a cartoon superhero. He spends most of his days impersonating Mel Gibson in Braveheart. Carrying a girl through a cave would be very on-theme.

  “No, really. I’m tapping out of this one,” I say. “It’ll be a nice break.”

  “Would you please just let me carry you?” Sam asks loudly. A few other people are listening now.

  “I really don’t want to,” I mumble, trying to keep this a private conversation.

  Sam kneels in front of me, looking up with his round kiwi-green eyes framed in dark lashes. “Please let me carry you,” he says, quietly now.

  “Aww,” a few girls say in unison, close behind us.

  I look from Sam to the cluster of girls watching us to the side. Why do I say yes? Who am I trying to please? What good do I think this will do?

  We leave my wheelchair with one of the guides, and I wrap my arms around Sam’s neck as he grabs my legs. We start the long hike through the dark, damp caves. One hundred feet in, I know I’ve made a giant mistake. My chest and cheek rest against Sa
m’s quickly dampening back, and my arms and neck quickly start to ache. As we reach a tight corner, Sam bends down, and I see the bright white light of a camera flash behind us. I turn around to see one of the girls who gushed “Aww” a few minutes before, winding the film of her disposable camera. She continues to take pictures of Sam carrying me through the cave throughout the tour, more interested in the performance of hero and damsel than the caves themselves. If this had taken place today, would we have become another viral internet story? I can see it now: “Brave Boy Carries Disabled Girl Through Cave: There’s Hope for Humankind After All!”

  The trip in the cave feels like climbing across the circumference of the moon. With the thump of each step, I wonder whether my shoulders will pop out of their sockets. I feel like a piece of luggage, a deformity growing off Sam’s back. When we finally make it to the other side of the cave, we have to wait a couple of minutes for my chair to arrive. Sam helps me prop myself against a wall as person after person congratulates him on carrying me so far.

  “Dude, that was incredible,” they say. “I can’t believe you carried her that whole way.”

  Sam doesn’t make a big deal out of it. Even so, I don’t want him to touch me. When my chair finally arrives, I reach for it like my own mother.