Sitting Pretty

by Rebekah Taussig

  These moments add up—so rapidly and consistently that I barely notice the added weight. When I take a beat and look around, I don’t know where my personal insecurities end and ableism picks up. Who would I even be if my body were allowed seamless access to my city, my community, my friends’ houses? I mean—really—what would happen if I stumbled onto some alternate universe made perfectly accessible to me? It’s hard to imagine such an unfamiliar flow of confidence, self-assuredness, and ease.

  * * *

  The summer I moved back in with my parents drifted into fall, and finally, one of my desperate, late-night searches for a place to live brought up a little house with manageable rent and only a few front steps. I thought, If I can find a way up that curb, and we build a ramp, maybe this could work? I arranged a visit with the landlord. Micah bumped me up the front steps and through one of the two front doors. I took one look around, and my heart swooned. Home!

  The landlord told me the house was built in 1895. All of the doorknobs were wobbly, and cracks were creeping up the walls and across the ceilings. It had a farmhouse kitchen sink, a free-standing claw-foot tub, and plenty of unexpected quirks (like that extra front door and ancient knobs on the vents and locks). I eyed the bathroom, and although I couldn’t fit my chair through the door, the landlord said he’d throw up a few handrails. I could picture myself sitting on the edge of the tub while I brushed my teeth at the sink. The real miracle was the washer and dryer located on the main level. In my previous house—as in most old houses—the laundry unit was located in the basement, so I’d been taking giant piles of dirty clothes over to my parents’ house every other week for ages. A washer and dryer I could access in my own home! It was a palace. A few weeks later, I moved in and set to work making it my own.

  Based on the design and (overwhelming lack of) flair breathed into the vast majority of tools and spaces deemed “accessible,” I imagine it’s assumed that disabled folks don’t really have taste. If you need access, surely the desire for style has been canceled out. Accessibility must necessarily be the sole, all-consuming, number one priority, erasing any other possible preference or desire. “Beggars can’t be choosers!” and all that. You’ll take the glaring metal bars, cement walls, and brown Velcro, and you’ll be grateful! Of course functionality is important. You might even say vital—I can’t live somewhere that I can’t get into. But I’m also a person with very specific preferences about floors and lighting, wall color and door frames in my home. I don’t want just a shelter I can enter and survive in. I want a space that feels like home. Don’t you?

  Micah and I bought three flimsy, laminated bookshelves from the thrift store and spray-painted each piece on the front porch in the middle of the night. We gathered a bunch of old magazines, cut out piles of pictures, and pasted them onto pots and into collages for the walls. I placed my southwestern cactus lamp next to the giant Greek mythology painting with the gold frame, because I liked the way the colors meshed. Since I can’t stand up for a shower very well, I reconfigured the space, hanging plants with hearty green leaves and winding vines along the shower curtain rod above the tub. Even today, I stare up at the vines curling above me during a soak and feel like I’m in a jungle. Home! The place where I feel inspired, free to create and dance and make messes and simply be—the place that swaddles me in stories and vibrant life.

  Before I get carried away, and you start believing in happily-ever-after, it’s important that we look at this house in its entirety. I love my cracking, wobbly home, but it’s not a perfect picture of access. I park my car on the street, so I have to pop my wheelchair up on the curb, and I don’t make it every time. Then I push myself up the steep ramp to my front door, which can be slow and grueling. Things fall off my lap, and it really sucks when it’s raining. I can’t fit my wheelchair in the bathroom, and my exquisite, freestanding tub is not an ideal setup for easy transfer. Falling is pretty routine.

  Sometimes, after spilling my groceries trying to get up the ramp or slipping in the bathroom, I’ll start another Craigslist search. I’ve reached my limit! I’ll think. But quickly, the discouraging search to find a new accessible home I love and can afford brings back the warm fuzzies for where I am.

  For now, I’m willing to pay the toll of the curb to feel cozy and inspired in my home. This is messy, works-for-now, finding-my-own-weird-way access, while not throwing aesthetics out the window. This is the balance I’m striking. For now. And for all of the intricacies, roadblocks, and trade-offs embedded in my own story, I see a library full of other stories—other ways folks with disabilities have managed to navigate the spaces they occupy. I don’t know how many have landed in nursing homes. Who has died before their name made it to the top of one of those waiting lists? Who is going into debt, feeling ostracized, accumulating guilt for leaning on others? I don’t know what badass accommodations people have built for themselves, what beautiful spaces have been dreamed into existence for disabled bodies and minds. I don’t know all these stories, but I know each of them is full and complicated and deeply personal.

  I understand that my city isn’t actively trying to send me the message that I’m unwanted. The businesses in this area aren’t forbidding me from spending my money there. My community isn’t actively trying to make me move back in with my parents. That can’t be said for a lot of groups of people throughout history and even today. Instead, the message I hear the most is something more like, “We’re just not thinking about you at all”—a sentiment that intends no harm even as it dismisses an entire population.

  * * *

  After waiting so long for the accessible dressing room, I feel empowered to use my voice. As I place my items on the checkout counter, I smile at the clerk and ask to speak with a manager. I am not a threat! I just want to have a friendly chat, my chirpy voice tells her in a frantic attempt to avoid slipping into the weather-worn role of Angry Cripple Versus Defensive Store Manager.

  I don’t know what I’m hoping for—that they’ll put a lock on the door so you have to get a sales associate to let you in? That they post an extra threatening sign below the already existing “accessible” symbol?

  “I just wanted to run something by you, so you and your staff can be aware,” I say, smile fixed, treading so lightly. I explain that the accessible dressing room is often being used for extra-long fashion shows with pals. She is apologetic. Indignant, even. “That shouldn’t happen,” she says firmly. She seems to really feel it. I’m relieved. She heard me, I think.

  “Next time you’re in the store,” she says, “let us know, and we’ll make sure that room is available for you.”

  Wait, what? My hands tingle. The sturdy, clear communication I thought we were having completely dissolves. This is the solution? I imagine trying to flag down a staff member every time I visit the store. The awkwardness of getting their attention while a line of customers waits. Trying to explain the situation from the ground up to a new person each time. Shopping with the pressure of knowing they are keeping a dressing room open just for me.

  It reminds me of the bakery in Westport with a lift outside the building that can be operated only with a key they keep inside. “Just call us when you’re waiting outside. We’ll send someone out to get you!” Or the crepe restaurant in Westside. After pushing yourself up the ramp attached to the side of the building, you find a locked door with a keypad. “Just send a friend to open it from the inside,” they say. And what if I’m alone?

  This moment in the thrift store waiting for the accessible dressing room is connected to a thousand other moments that—all together—weighs approximately one thousand pounds. But to the manager? This is a rare occasion. An unexpected hiccup in her week. Some disabled woman asking for a special favor each time she visits the store. It requires a small adjustment, an easy accommodation. Problem solved!

  But to me and, I imagine, the aging woman who waited for the accessible room with me, this is an everyday, everywhere experience—the battle that follows the previous bat
tle and precedes the next in our ongoing attempt to occupy space in the world.

  “This isn’t just about me,” I tell the store manager. “This happens to everyone who comes in your store and needs that dressing room.” She keeps nodding emphatically, sweetly even. The conversation fizzles into both of us repeating ourselves. She thinks she has heard me. I leave the store and get in my car, deflated. She didn’t hear me at all.

  * * *

  In that moment, talking with the thrift store manager, it felt clearer than ever—why stores are built the way they are, why nondisabled people perpetually occupy the few spaces designated for disabled bodies, why an entire city hadn’t thought to build spaces for disabled folks to live in, why it’s so hard to achieve genuine change: the vast majority of nondisabled people don’t see—and certainly don’t feel—the experience of disabled folks. There are others who recognize the textures of inaccessibility—fat and queer folks, so many aging bodies, people of color and those encountering language barriers, anyone who knows poverty—all have an extra set of fears, costs, and concerns.

  But so many others can step into a new restaurant or bar without worrying whether there will be a spot where they can pee, and when they pop into that public restroom, they’re presented with five stalls made with their bodies in mind. They can click “accept” on an evite without researching venues and texting the host to come up with an elaborate game plan for getting in the door. They can get on and off public transportation, visit a new city, travel from here to there without researching accessibility in advance. (Do you know how many destinations provide any information about accessibility at all? Have fun on Google with this one!) They can book a hotel room without worrying whether they’ll really be able to use the shower or sink once they get there. They have access to every kind of seating in the theater, stadium, coffee shop, bar. They can try on clothes in pretty much every kind of dressing room ever made. When it’s time to move, they have more than literally one option. How can anyone feel the rejection, reach, and urgency of inaccessibility if the entire world has been built with them in mind?

  Because inaccessibility over time equals . . . what, exactly? It’s more than a string of inconveniences. It’s more powerful than a missing ramp here and an elevator there. (Although, good lord, I am grateful for every ramp and elevator I see. Always.) My experience of inaccessibility is cumulative. It’s more than a line of targets to knock down. It’s a way of being in the world, or just outside of the world. It’s a blaring message on a loudspeaker to tune out. An ideology to survive.

  Some days, I feel too vulnerable to leave my house, too fed up to subject myself to the gamble of strangers interacting with me, too tired to fight to occupy a corner of space. Inaccessibility over time tells me that I do not matter, am not wanted, do not belong. This land wasn’t made for me. So I stay in, keep to myself, avoid, cancel plans, carry anxiety in each fold and bend of my body, feel very alone and trapped and helpless. I also cope. I write, laugh, develop deep friendships with a safe few, find the movie theaters and coffee shops I can access and go to them one hundred times in a row, and sometimes I allow myself to be lifted up and down a flight of stairs. There are days I talk over the loudspeaker that says I’m not welcome, when I refuse to be invisible and silent. Sometimes, I even forget how hard this is. All of this is true at the same time.

  Whenever I share a story about a shop that has a dumpster in its accessible parking spot or a restaurant that keeps its accessible entrance locked, people are quick to indignation, channeling all of their rage at this one business, listing all sorts of things I should do, or they would do, to demand accessibility. You should call this number! I would tell off that person! Some days, I have a bit of that fight in me. Especially when I can see the big picture—that this isn’t just about me. Those days are the days I can talk to the manager about the problems I see with the thrift store’s accessible dressing room. But the rest of the time?—it feels like getting out a toothbrush to clean a filthy house when I’m still trying to find a way to breathe in these rooms full of toxic fumes.

  Even so. I choose to have faith that we are getting there, making our own weird way to an accessible future—a space that supports all of us. An accessible future is shaped by the fundamental understanding that we all have bodies, that those bodies are different from one another, and each is worthy of profound admiration, care, and respect. The aging body, the female body, the body in pain, the injured or sick body, the fat or short or asymmetrical body, the racially stigmatized body, the body that needs to use the bathroom, the blind, deaf, paralyzed, tired, nonbinary, hungry, bleeding, transitioning, seizing body. Every single one. In this future, people won’t be punished, shamed, isolated, excluded, cast to the fringes, or told to go around the back or to find another toilet because of that body.

  Bodies—in all of their variant forms—will be considered, allowed, and welcomed. Our vast differences will be thought of as we design our structures: our buildings, our healthcare, our transportation, our mobility aids, our roads, our governments, our clothing, our classrooms, our spaces of work and play, our notions of love and romance, parenthood and friendships. In this future, we will not be encouraged to silence our bodies. Instead of rejecting and abusing our bodies to fit into the boxes, our boxes will be bigger and malleable. This future doesn’t only recognize but honors the fact that our bodies grow and tire and rebel and tremble and fight and change and scar and defy categorization. This future won’t appear out of thin air; we have to create it—little by little—as we practice listening to, caring for, and respecting all of our bodies. Please. Let’s create this world for each other.

  Epilogue

  As I worked on each chapter of this book, I kept wishing we were in the room together so I could hear your stories and questions, too—so we could think through all this together. And now that we’re at the end, I especially wish we were face-to-face, because I have this pressing thing to say to you: thank you. For sitting with all these words, for receiving all of these stories, for making space to think through these ideas. Even if—especially if—parts of this book confused you or you found yourself sometimes talking back. You are some kind of miracle to me.

  So, where do we go from here? How do we step into this unexplored accessible future together? How do we understand the power of representation and feel the weight of its absence? I believe we have to start with listening. We allow someone else’s experiences—even when they differ from our own, especially when they differ from our own—to matter. We think critically about old, established narratives. We knock over some of the artificial boundaries we’ve invented for ourselves and see where the water flows. We try out new paths, and when those don’t work, we find other ones.

  If you’re interested in doing this kind of reimagining, I’ve included below a messy pile of resources that have changed me in one way or another. I discovered some of this during my graduate work, some I read/watched with students, some I found through the cosmic powers of the Interwebs. This list is not exhaustive or focused, but it is entirely personal—I’ve included only creators/creations that I’ve spent time with and continue to think about today. 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; and prompt us to question our methods of determining human worth. I believe there is a kinder, more supportive, creative version of us out there, and listening to these voices is one way to move in that direction.

  Activists, Artists, and Very Cool People

  IMANI BARBARIN

  Creator of the powerful #WhenICallMyselfDisabled hashtag, Barbarin writes about the world we live in from the perspective of a Black woman with cerebral palsy. Whenever anything disability-related appears in the news or pop culture, I always want to know what Barbarin has to say about it. Follow her work at https://www.crutchesandspice.com.

  EMILY LADAU

  Disabled writer, speaker, and
podcaster (check out The Accessible Stall podcast! It’s worth your time), Ladau sees through all the bullshit and voices nuanced, honest insight into conversations being had about disability today. I mean, I referenced her work so many times while I defended my dissertation that it would have made for a great drinking game.

  ALICE WONG

  Wong is on the front lines of a movement as the director and founder of the @Disability_Visibility project (a collection of oral histories from people with disabilities), she started #Crip Lit (Twitter chats for disabled writers) and #CripTheVote (a nonpartisan movement to bring disabled voices into our politics), and she cocreated the Access Is Love project (an initiative to reframe and promote the expansion of access). She’s a big deal, and you want to listen to what she has to say.

  STELLA YOUNG

  Revolutionary activist who coined the concept of “inspiration porn” in her TED Talk “I’m Not Your Inspiration, Thank You Very Much.” Young is no longer with us, but her voice still carries so much power in the disability community.

  Books

  ELI CLARE, PRIDE AND EXILE: DISABILITY, QUEERNESS, AND LIBERATION (1999) AND BRILLIANT IMPERFECTION: GRAPPLING WITH CURE (2017)

  Storyteller, activist, theorist, and poet who explores the intersections of disability, race, gender, sexuality, and class. I can’t teach anything related to disability without bringing Clare into the conversation.