“Oh, don’t worry. It’s okay! We’ll find someplace!” I said, instinctually. I rubbed my hand in circles against his back, willing the weight of inaccessibility off his shoulders. But it was a burden I couldn’t lift. What Micah had believed to be a series of annoying inconveniences revealed itself as a reality much gnarlier, more powerful, and consuming. This wasn’t a pesky problem to bat away. It was a problem that defines and dictates.
As Bertie started to move her stuff out of our house and into her new home with Joe, I had to come to terms with the fact that despite the collaborative efforts of all my people, I still hadn’t found a place to live. I secretly wished Micah would ask me to find a house with him. Our combined incomes would allow for more options. But even as I hoped for it, I felt gross for wanting the progress of our relationship to be determined by my housing situation. So, that spring, as I bought a bridesmaid dress for my best friend’s wedding, I moved back in with my parents at the age of twenty-nine. This was simultaneously a great relief and a profound defeat.
On one hand, I was so grateful to have a place to go. This is not the case for many folks—a reality that felt closer, but still hardly fathomable to me. Had I not been caught by this net of support, there are other ways this could have gone. Disabled folks are often forced into homelessness, nursing homes, or subsidized housing far away from all that’s familiar to them. They can feel like a burden staying with relatives or friends. Sometimes they stay in horrible relationships because they need shelter. I was keenly aware of this.
On the other hand, I was embarrassed and deflated to be moving back home at twenty-nine. I was burrowing into my childhood bed each night, staring relentlessly into the glow of late-night Craigslist searches. It didn’t help that the only bathroom I could access in the house was in my parents’ bedroom. I’d get home late in the evenings and sneak into their dark room, listening to my dad’s snores and trying not to bang my chair into their antique dresser. Micah would come over to watch Netflix (in my childhood bed), and my mom would bring us a bowl of popcorn and a plate of apple slices. (Did you forget that I was almost thirty? Yeah, me neither.) The longer I lived there, the more ashamed I felt. I’d drive home from a day of teaching, pull into my parents’ driveway, and feel about as capable of taking control of my own life as a tween.
* * *
I spend a lot of time at the thrift store down the street, self-soothing by buying the weirdest mugs I can find and cheap, gold-sequin tops I’ll probably only wear once. One day, I’m waiting in line for the single accessible dressing room with an older woman who walks with a shuffle. She sits on the lumpy floral couch beside me, staring blankly toward the rack of tangled purses—prepared to wait. This isn’t the first time we’ve sat here together. In fact, I’ve come to expect the accessible dressing room to be occupied by two friends who can’t bear to separate or someone with a full shopping cart of clothes. Five inaccessible stalls sit empty beside us, their doors gaping open, just in case we hadn’t noticed the unused, and unusable, spaces.
It’s not always obvious who needs the extra space or a place to sit. The designated “accessible” signal features a wheelchair, but that’s not the only type of body with an extra layer of need. On this occasion, though, as the older woman and I sit and wait, we feel it: these two shoppers in the dressing room just want a bigger room, and they want it all afternoon. We listen to them rummage through clanking hangers, chitchatting casually as they put on a full-fledged fashion show for each other. They sound a little sleepy, like they’ve just had a big lunch, and they’re ready for a nap. “What do you think of this skirt?” one asks. I see her feet moving below the door. She takes a few, slow steps in a circle. I can picture her straining her neck to see the view from behind. The blue accessible symbol blares brightly on the side of the door facing me.
“I like it,” the guy says, sounding bored.
“Are you sure?” More spinning.
“Here, try it on with this shirt.”
She drops one shirt into the pile of clothes I’ve been watching accumulate on the floor. There’s a lot of denim.
Twenty minutes later, on a ragey whim, I knock on the door. There’s no response. I hear his voice whisper, “Are they knocking on our door?”
I chime in, “Hey! Yeah! Just wondering if y’all have an ETA. There are two people waiting out here for the accessible dressing room.” I keep my voice light and bright. I’m so careful not to put them on the defensive.
After a confused pause, the same voice says, “We’ve got one outfit left to try on.”
The woman on the couch glances over at me—the first time since we’ve been sitting side by side—and whispers, “Nice!” She gives me a thumbs-up and a wink.
I feel proud of my small intervention. Until I realize it doesn’t matter. The pair proceeds along with the same rhythm, seemingly unmoved by my friendly prompt. When they exit five minutes later, the guy looks over and past us. No words. No eye contact. He has a few clothes draped over his forearm, and he takes long, slow steps. The woman glances at us and apologizes quickly and quietly. She keeps her eyes to the floor as they walk off. Were they embarrassed? Annoyed? Indifferent? Did they talk about this moments later? Will they even remember it happened by the time they get to their car?
Now that I have the space, I rush to try on my handful of dresses. I can picture the woman still sitting on the lumpy floral couch. How long has she waited for this accessible space now? Thirty minutes? Thirty-five? My anxiety starts to simmer. I think I should’ve let her go first. I yank dresses over my head, not taking the time to pull the skirt over my bum before moving on to the next thing. The space is big enough for my whole chair, even with a bench where someone like the woman waiting outside the door might sit. This is better than a lot of “accessible” dressing rooms I’ve seen, which are often either crowded with storage or just big enough for my chair to fit inside, but not big enough for me to put my feet on the ground to pull up a skirt. There aren’t any handrails in this dressing room, though, so I put my weight on the hook used for hangers, trying not to lean too heavily on it. I’ve broken these kinds of hooks before, using them as a stand-in for handrails when they’re designed to hold the weight of only a few sweaters and dresses. It’s hard to be careful when I’m rushing, and I feel it strain under my grip. I gasp and let go, falling back in my chair. Time to wrap this up.
I fly out of the room, shouting “Your turn!” before I’m through the door. The older woman shuffles in with her tiny bundle of clothes to try on. Nothing about this half hour we’ve shared together seems to ruffle her too much. As if this is exactly what she expects from the world. My heart surges. You deserve better! I think. You deserve consideration, respect, the space to try on clothes without waiting half an hour for punkass shoppers to finally tire themselves out! Your aging body is a wonder. A miracle of defiance and survival. There should be a red carpet unfurling two feet in front of your every step! My neck and cheeks are hot. My resentment doubles, enough for her and me. (Why is it so much easier to feel indignant for someone else?)
But if this experience seems routine to her, I have to admit that it is for me, too. I’m used to waiting three times as long or not having a place at all. I’m trained to claim as little space as possible, cautiously and apologetically, to avoid irritating people, not just because I hate when anyone is mad at me, but mad people also tend to be less accommodating. It’s an overly rehearsed scene with lines I can perform in my sleep.
So our experiences overlap, but we seem to receive them differently, and I think I can piece together part of the reason why. As someone who grew up after the passage of the 1990 Americans with Disabilities Act, I have a fundamentally different perspective than most disabled people born much before me. People like my friend Ruby and her husband Bruce, both wheelchair users and rebellious disability activists and advocates, who have been demanding access to participate in their communities since the 1960s and 1970s. Relentless efforts like theirs labored the ADA i
nto existence. I understand that it’s because of the ones who came before me that I’m able to occupy as much space as I do. I want to thank them for every ramp, every lift, every accessible dressing room.
George H. W. Bush signed the ADA into law in 1990, just a few months after around one thousand disability activists showed up at the eighty-three steps in front of our nation’s Capitol, a building that many of them could not enter without elaborate assistance. After hours of speeches and protesting, sixty activists took to the stairs, many of them dragging their bodies up each step, literally demonstrating the spectacle—the social and physical discomfort—required to make it inside the political hub of the United States. Did you learn about this part of our history in school? Neither did I. The country hardly noticed the protests or the signing of the act. It was not a sexy news story. Unless you were one of the activists who had taken to the Capitol steps in an effort to be seen, acknowledged, maybe even valued, or one of the builders under new, largely misunderstood parameters, people didn’t pay much attention.
From where I sit in a post-ADA world, it’s easy for me to detect the overwhelming disregard, misunderstanding, sometimes disdain, and ubiquitous oblivion surrounding the original vision behind this piece of legislation. My students rarely know what I’m talking about when I mention the ADA, and I’ve had medical professionals cock their heads in confusion—What is this A-DEE-A thing you speak of? It’s recorded as law, but it wasn’t a law voted into reality by The People. It was handed to them from on high, and without great marketing. At best, the law quietly insisted that disabled people were humans, too. At worst, it embittered the public against those grabby, demanding cripples. Bit by bit, architecture began to change, not necessarily because our mainstream culture wanted to include a group of people they saw as possessing anything unique and valuable, but because the law demanded it. Owners of public buildings were required to make accommodations that many viewed as frivolous, inconvenient, and much too expensive for the payoff.
In fact, Americans understood and valued the ADA so little that about twenty-five years after it was signed into law, representatives from Texas and California dreamed up HR 620, the “ADA Education and Reform Act of 2017,” which sought to dismantle the bit of relief that the ADA offers by placing even more burden on disabled people to defend themselves and demand their rights to access. In February 2018, the bill passed in the House with 225 yeas and 192 nays. It wasn’t brought to a vote in the Senate, largely due to the efforts of Tammy Duckworth, a disabled senator from Illinois, who led a Democratic pledge to block the legislation. The bill died before going to a vote thanks to one disabled woman speaking up for a community that is still so often silenced. I wonder when or if access will become a concern in the forefront of everyone’s minds, not just the ones who don’t have it.
The revisions being made (or requested) for disabled bodies are often seen as extra. But this perspective holds up only because ableism is built on self-delusion; we tell ourselves the story that accessibility is a concern for only the disabled body, conveniently ignoring every form of access that has been carefully, painstakingly breathed into existence to make life easier for nondisabled bodies.
Let’s take a giant step back and look at this together, like aliens watching from another planet. Someone, somewhere, at some point in time invented stairs, right? And since then, we’ve continued to build stairs, because they’re easier for bipeds than scaling walls or climbing rope ladders. We have cars and bikes, because we want to travel faster and farther than our limited bodies can manage on their own. Parking lots and roads were made because people wanted easier pathways for driving their vehicles. Without intervention on behalf of the human body we’d all be sleeping on the grass, drinking lake water from our cupped hands, living every day of sweltering summer heat and frigid winter snows in all our radiant nakedness. Mattresses, cups, and clothes exist because the human body has limits, and tools make surviving this planet a bit easier. Literally everything that’s been built—every signpost and path out in nature, every building and bus in our cities, every doorknob and chair in your house—was made to accommodate somebody. We stop refining or expanding our accommodations only when we’re satisfied that those we want at the party can get there.
But our accommodations go only so far, because for a good, long while, we’ve cared to include only a specific kind of body/mind in our communities. Conversations about access for disabled folks didn’t even start in the United States until disabled World War II vets demanded job training and rehabilitation after their return. It wasn’t until 1973 that we passed the first piece of legislation that said, Yes, you too. We think disabled folks deserve to exist here, too. Accommodations for disabled people aren’t “special.” At least, not any more special than the world of accommodations already surrounding us. It’s just that, typically, those who already have access haven’t had to think about who is still waiting to be included.
And yet, when we consider disabled bodies as a vital part of the larger group, all of us benefit. When curb-cuts were originally designed, the idea was to create accommodations for wheelchair users. Prompted by the smallest whiff of creative innovation, curb-cuts were imagined into being as alternate options for interacting with our physical spaces, and suddenly, wheelchair users were granted access to more of their own neighborhoods and public spaces. But something else happened, too. Parents pushing strollers found trips around the block a bit easier. And so did people on bikes and scooters, people rolling luggage, vendors with food carts, people in pain who needed to take smaller, more gradual steps. Closed-captioning provides those with hearing impairments a way to access the stories and news delivered through their screens, but it also allows everyone the chance to connect with videos, even when they need to turn the sound off on their device or can’t understand a mumbler. The medical model of disability—the default setting that sees individual broken bodies in need of individual solutions—misses so many opportunities to imagine a more flexible, accessible, inclusive, inviting world for all of us. What innovations might be made to medicine if disabled bodies were seen as conduits for innovation? What possibilities for play are we missing on our playgrounds? What practices might we adopt in our educational systems to facilitate more flexible, more meaningful learning for more students? What ways of being in the world might surface if we were able to lift the stigma clinging so tightly to the disabled body? What would happen if we decided disabled bodies were worth including?
When I say “included,” I don’t mean just the dressing room designated as the “accessible” space or the handful of first-floor apartments across an entire city designated as the “accessible” units. Access is more than the moment one disabled body bumps into one accommodating object. Access is a way of life, a relationship between you and the world around you; it’s a posture, a belief about your role in your community, about the value of your presence. There’s a fundamental difference between the experience of the person who wakes up taking for granted that they will, of course, have access, and the one who wakes up and wonders whether they’ll have access, how they’ll find or fight for their access, what they’ll do when they don’t have access. How do I make this real? Even though I know in my head that I have every right to be here, I’ve also been shaped—from the ground up—by a lifetime of inaccessibility, and because of this, there’s still so much I don’t know about myself.
For instance, I don’t know if I’m a “bar” person. It’s hard to tell. When I roll into a bar, the bartender doesn’t see me—or maybe just the very top of my head, if they’re looking for it. If I’m able to shout loud enough, wave my arms wildly enough to be seen and heard to order a drink, I turn around to a room full of people standing, talking a good two or three feet above my head. When I speak, they don’t hear me. So I shout over the talking and the music, and they lean down, angling their ears to my mouth. They nod and pretend they got all of that.
I don’t know if I like trying new things. I mean, every
part of me wants to say, I do! I love new things! Let’s try more! But then a friend invites me to her birthday party at a new pizza joint, and I spend two hours Google Earthing the spot, squinting my eyes across grainy images, scouring the restaurant’s crappy website for info on parking to assess whether or not I’ll be able to get in the restaurant, and when I can’t figure it out, and my breathing gets short, I send a quick text to say, “I’m not feeling well—so sorry I won’t be able to make it!” Then I spend the rest of the night hitting “next episode” on Criminal Minds and listening to my brain repeat, “What is wrong with you?”
I don’t know if I care enough about my students. Last spring, I got invite after invite to attend my seniors’ graduation parties. My heart sang, Yes! Let’s celebrate! Then I starred all of the invites in my email and waited weeks to respond. In that time, my brain flipped through imaginary visions of each venue and home, all of the emails and conversations I’d have to have to plan how I’d get through front doors or onto patios. I thought about dads lifting me and my chair up flights of stairs or aunts moving end tables or stacks of books or house plants out of my way—all of the quick damage control my body would inspire. My anxiety mounted. I sent out apology emails to each one, saying I was so sorry I wouldn’t be able to make it, never giving the real reason why. I’m not sure how much my absence was noticed, but I felt weak and small, frustrated and disappointed.
I don’t know if I fit in. I feel like an outsider with most people. How much is based on the fact that, as we navigate an environment together—the restaurant or park or bumpy sidewalk—a good quarter of my brain power is put into carrying that cup of coffee without spilling it or keeping my eye on the accessible route? How much of it comes back to the fact that I’m always taking a different path to get to meetings and gatherings?—I’m on the elevator while everyone else climbs the stairs; I’m flying down the ramp while others take the direct route; I’m driving to the conference in my accessible car while they take the train together. Some of this could be remedied if I’d just say, “Hey, someone ride in my car!” And sometimes folks take the elevator with me. But I’m already feeling like the weirdo. Like a middle schooler who prefers to remain under the radar—I’ll just stay invisible over here, thanks! I don’t always have it in me to ask people to join me on my roundabout path.
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