As Bertie and I get back to our table, the lights are dimming and the program is just taking off. I’m soothed by the pictures of the park they’re building. Universal design! Everybody wins! This is why we’re here. They describe their mission, and I applaud. Then the gears shift to the “entertainment” part of the evening. They introduce the first performer with a video. He’s a musician with a disabled sister. The film captures their closeness, their mutual affection. Then the musician brother comes onstage. He sings a few songs, we applaud, and I’m confused. Why this musician? Why the video with the disabled sister? Are we supporting the sister by supporting her brother? Does the sister give the brother credibility to sing at a charity event? Were there no disabled singers available to perform at this gig? What is happening?
Then the dancers come onstage. A group of teenage girls in matching leotards and streamer skirts prance onto the stage, each pushing a girl in a wheelchair. My entire body tenses. I sense a quiet, cold uneasiness move through the people sitting around me, and I wonder where their discomfort comes from. I imagine it isn’t the same as mine. As I sit at my table, the only visibly disabled adult in the room, I’m thinking of my seven-year-old self, learning to swivel and spin in my first wheelchair. It was hot pink, and I loved the way it glided and spun, responding to the slightest pressure of my hands. I turned up Amy Grant on the radio and danced with my whole body and chair. I pieced together my own wheelchair dance routine with wheelies and backward zigzags. I imagined starting my own wheelchair dance classes. I loved to dance, and I danced hard, until my seven-year-old dreams were choked by the shame I learned to feel for my own body and the weird way it moved. That’s not dancing!
I can barely breathe as I watch the girls onstage. The walking girls push the seated girls to the front, then begin the dance routine behind them. They move their arms and legs to the music, jumping and swaying, spinning and cascading in sync, while the girls in wheelchairs sit, fixed and planted at the front, some of them smiling, one of them waving her arms. In the middle of the performance, the dancers begin to push the girls in their wheelchairs around the stage. What is the purpose of this part of the performance? Is it for the benefit of the audience? Or the girls in their wheelchairs? Is this fun for them? I wonder, have these girls in their wheelchairs made up their own dances at home? Why can’t we see those? There’s a lot I don’t understand about the scene unfolding on the stage, but one thing is clear: the girls on their legs are framed as the dancers, and the girls in their wheelchairs are used as props.
I don’t know whether the girls in their wheelchairs enjoy their part in this performance. At least one of them seems to be having a great time. I do know that similar childhood rituals left their scars on me, even though I lacked the language to express the harm at the time. Sitting in the audience, watching this awkward dance, I’m now thinking of my nine-year-old self. Still with my hot-pink wheelchair, I sat with my mom on the stages of churches in front of audiences. I knew I was there to testify to God’s unending goodness. I didn’t quite know the meaning behind the words I was saying, but I knew a story was unfolding behind me that was much bigger than me. Just like the girls sitting at the front of the stage while the real dancers pranced behind them, I had been the smiling child-prop in performances, too.
After the dance number, the auction begins. This is the reason all the fancy people have gathered. This is my first real-life auction, and I’m enthralled by the hypnotic rhythm of the auctioneer’s chatter. He’s drawing out money from all the leather wallets and jeweled clutches like a human magnet, and the giant tally of funds accumulating slowly grows on the projected display behind him. As the evening goes on and donations thin, they start to bring some of the girls in wheelchairs back out onto the stage. They’re young—no older than ten or eleven? One by one, each girl talks about how excited she is for the inclusive parks. One of the hosts, a man in a tuxedo, bends down with his microphone to ask one of the girls whether she has anything to say to the fancy people. “Please give us money!” she shouts. The room rumbles with sophisticated chuckles.
As I drive home that night, I feel gross. I want to celebrate the accessible parks, purely and simply. I don’t want to be the crank, endlessly making a fuss over the problematic shortcomings of people just trying to make the world better. Why can’t I just feel good about all the money they raised and move on? I genuinely believe the organization wants to make the world more inclusive for disabled folks. I also think they illustrate just how deep the roots of ableism run. Putting disabled people in the position of beggars is an old, punishing narrative, and while it’s been known to prompt the feelings that lead to donations, it also perpetuates the ableism this organization strives to combat. It keeps disabled people in the position of helpless, small, and Other. We dismantle ableism and create inclusion when we flip that script—when we demonstrate that disability is a blurry, shifting category that prompts more care and flexibility and access for every human body. Even so and at the very same time, it’s hard to hold on to the big, unwieldy picture when there are folks who need mobility aids and ramps and access—and they need them right now. The big picture asks for changes that take ages to accomplish, and we rarely have the luxury of waiting.
Days later, I still can’t shake the feeling. I write a draft of an email to the woman running the organization, but in the end, I don’t think I even consider sending it. I can’t bear to criticize that lovely, well-intentioned woman.
* * *
After the man yelled “Don’t fall! Don’t fall!” across the parking lot, I got a cup of coffee and pulled up to a table with yet another stack of student papers to grade. I stared blankly out of the window, my mind running loops of complaints about all those ableists making assumptions and making me feel small. When I finally snapped out of my reverie, I realized I was running late to meet my friend Joe for a movie. He would be meeting me at my house in a few minutes. I rushed to my car, whipped the chair apart, and drove home at illegal speeds.
When I saw him waiting for me in my driveway, I rushed into apologies for being late. “Good grief, I’m so sorry, Joe! Why am I always late everywhere all the time? Before we leave, I just have to grab something from the house real quick, oh, but Joe, you wouldn’t believe the man in the parking lot today!” As I plunged toward the house, I recounted, with the animated speed provided by caffeine and adrenaline, the man’s obtuse assumptions about my capabilities. “He just kept yelling, ‘Don’t fall, don’t fall!’ at me!” I said. The sun was bright, the air was warm, and I felt strong and powerful as I recounted the man’s absurdity in light of my obvious strength and agility. I arrived at the bottom of the ramp that led up to the back door of my house, and like an obnoxiously sunshiny cartoon character, I threw up my arms and shouted, “Isn’t it beautiful today?!” My front wheels hit the edge of the ramp, and I felt my body flying through the air. Time slowed enough for me to form the thought, “Oh, you’ve got to be fucking kidding me,” just as my knees hit the concrete. I had fallen, hard. The worried man in the parking lot had just arrived two hours too early.
Joe and I giggled over the irony. I got back into my chair. We went to the movie.
This was not the first time I had fallen. Not by a long shot. There was the day in eighth grade when Bertie pushed me full speed across the grass as we hit a lump of dirt. I catapulted out of the chair, and Bertie froze as teachers rushed to the scene. The day I held my baby niece in my arms, feeling strong as I leaned against the wall just as my legs gave out and we both crumpled to the floor. She howled as I passed her off to my sister and sped to a back room where I could cry alone. The first time I fell in front of Micah, leaping from my chair and dramatically, ungracefully smacking my butt against the stack of books piled next to the bed where I had intended to land. How many times had I fallen in the bathroom, my wet feet slipping just before I heard the thwack of my tailbone on the tiles? So, yeah. I fall a lot.
Several years ago, my friend Amanda and I were crossing th
e street when my front wheels hit a crack in the road and I flew out of my chair in the middle of the crosswalk. My knees hit the ground, and my brain burst into one hundred different thoughts, one of which was an impulse to immediately console Amanda. I’m so used to people panicking when my disabled body pushes itself to the spotlight. (Don’t fall! Don’t fall!) I was desperate to convince her that I was really okay.
Instead, it went like this: I scrambled back into my chair faster than I had fallen out of it, and Amanda took a beat. She didn’t hover or shout, didn’t seem anxious or dramatic. She just watched me settle back in my chair and then said, “You are a fucking badass.” After a lifetime of using a wheelchair to get around, I’m used to being told I’m helpless, even when I know my strength. But Amanda recognized grit in a scene most people read as weak. She caught hold of my slippery dignity, protected it while I climbed up into my chair, and then handed it back, intact.
When I imagine the shape of kindness that actually feels like kindness, it necessarily includes the pieces of this moment with Amanda: dignity and an unwavering understanding that falling is not the worst thing that can happen to a person.
The goal is not to avoid falling or needing help. The goal is to be seen, asked, heard, believed, valued as we are, allowed to exist in these exact bodies, invited to the party, and encouraged to dance however we want to.
I still think about that gala. How do we win at a game where our status as “loser” is already written into the rules? How do we represent disability with nuance over the roar of viral “promposals” from the captain of the football team to the disabled girl in his class? These are the stories people want to hear about disability, and yet they’re the stories where disability exists only as the shadow hovering on the edge of the frame, here to make the nondisabled helper at the center of the story look good and feel hopeful. But I think this is the very place where nondisabled people have the power to do the most good for everyone, disabled and not yet there. If you want to be genuinely, actively, real-deal “kind” to disabled people, invite disabled voices into your organizations, businesses, and programs. Allow disabled people to perform in more roles than the grateful recipient of generous philanthropists. Recruit disabled engineers and dancers and office administrators and comedians and lawyers and speakers and teachers to participate in your world, and do your best to make that world accessible to them. And if we insist on using the “kindness” word to describe this kind of inclusion, we have to recognize that inclusive “kindness” isn’t just a favor extended to disabled people; including disabled people is a kindness for all of us. Because listening to voices that are typically silenced brings to the table nuance, endurance, creativity, beauty, innovation, and power.
8
What I Mean When I Talk About “Accessibility”
The day my friend Joe proposed to my best friend Bertie, I felt a lot of things. I was happy they were happy. I was proud of myself for keeping the proposal a secret (Bertie’s mom didn’t think I could do it, and I did it, goddammit!), and I couldn’t wait to help Bertie plan her wedding (although, she didn’t actually need an ounce of help from me, having the best taste of any real-life human I know—really, you should have seen her wedding dresses—plural). And yet, among the giddy squeals and overenthusiastic Pinterest pinning, there was also a pang of sadness. I knew this meant moving out of the house Bertie and I were sharing.
Four years before, I’d left my marriage to build a life on my own. I’d been living solo in a subsidized apartment, buying my own groceries, cleaning up my own messes, and, for good and bad, spending so much time alone. I finished my bachelor’s and master’s degrees and started my PhD program in that apartment. For the first time, I felt capable and in charge of my own story. So when Bertie said she needed a roommate, it felt like a dream coming true. Here I was building a life that I wanted to live in, and it was sturdy enough to expand and explore. I worried about being able to afford paying rent on a place that wasn’t set aside for poor, disabled, and/or old folks, and I wasn’t quite sure we could even find a place that was accessible, but I took a leap, because it felt like the universe was on my side.
We searched for a few tense months. I felt heavy waves of guilt for making Bertie’s search so much harder—with any other roommate, she’d have infinitely more options. (Seriously, search for any kind of housing on any website. Then adjust your settings to include “accessible” housing—and presto!—watch all the options magically disappear.) But right before we were about to ditch the plan and set Bertie free to move on to an alternate plan that didn’t include her disabled sidekick, we found a little two-bedroom house on Rainbow Boulevard. The house had a few stairs leading up to the back door and one more big step just inside. Bertie was confident that her engineer dad could build a handy ramp (which later proved to be a much more complicated project than either of us imagined—I mean, truly, a real-life puzzle—thank you, Bob!). We told the landlord we’d take it. It felt like a lucky find, but I also felt like we’d put in the time. It wasn’t until later that I understood just how lucky we’d been.
The house was right across the street from a Chinese takeout restaurant and a vet hospital with a vibrant animal mural painted on the side of the building. Bertie found a bright orange vintage sofa on Craigslist, and we set to work filling the place with books and succulents. We threw themed parties and complained about our days over wine and popcorn. We drank lattes and ate noodles on the porch (but never sat on the porch swing, because my brother-in-law installed it with the caveat that it couldn’t hold the weight of a real human, and we should never ever try to actually swing on it if we valued our lives). I made passive-aggressive comments about the dishes left in the sink, and Bertie started sleeping to the sound of two fans to cut out the noise of my cats getting restless at three in the morning. This was the single adult lady life I’d wanted but hadn’t believed I could live. I saw myself as a pilot who’d guided her plane into the perfect landing.
And then Joe proposed, and he and Bertie decided they didn’t want a long engagement, and before I’d even gotten used to seeing that giant ring on her hand, they were looking at houses together.
“What should we do with the orange couch?” she asked me. “I don’t think we’ll take it with us to our house.”
I concentrated on painting my nails, trying not to cry. “Well, we can’t just donate it for some boring person to buy!” I said, sounding like a sixteen-year-old version of myself appalled at my out-of-touch mother and her inability to understand what was at stake here. The orange couch was sacred!
As Bertie dove into wedding planning and picking out rugs for her new house, I dipped my smallest toe into the shallowest pool of home hunting for myself. I was reluctant, a little pouty, and at times just plain sad. Every time I opened my laptop to test the waters, the sparse options dampened my already weak motivation. Again and again, I clamped the laptop closed, until suddenly, I noticed it was March and Bertie was moving out in May. My moping started to tangle into anxiety. It was time to get serious.
I pinpointed my parameters. It had to be affordable on a graduate-student budget (can we even call it a “budget” when the paychecks are that small?), and I had to be able to get in and out of it. If I could move around the space without enormous barriers, that would be cool. Not the most demanding parameters the viewers of HGTV have ever seen, I imagine.
I started asking around to my mom and my sisters, my closest friends and their boyfriends, my boyfriend and my dad. Have you heard of any places? Do you know anyone moving? Have you seen any “For Rent” signs? They’d send me Craigslist and Apartments.com listings and track down leads from friends of friends. Joe and Bertie spent a whole afternoon driving around town visiting places with me. I had a whole network of loving, smart people on the lookout. Something had to materialize soon.
We visited affordable apartments with dirty bathrooms and carpets, one accessible unit per building (that might be available in a month or two?), and no access
ible parking. There was the unit that was advertised as accessible but actually had street parking on a steep hill and trash bins located across a street with no curb-cuts. After a few months of looking, there seemed to be three basic categories of housing:
Places that were affordable but inaccessible (with parking, laundry units, and bathrooms I couldn’t access and a nice sprinkling of stairs)
Places designated for low-income, disabled people with waiting lists in the hundreds (I’ve had my name on three waiting lists for subsidized developments like this in Kansas City, and my name hasn’t reached the top of any list in four years. One place actually sends me letters each year, asking whether I want to keep my name on the list, and I keep saying yes, because, by the time I actually make it to the top—in ten years? fifteen?—who even knows where I’ll be or what I’ll need)
Places that were brilliantly accessible (with sleek floors, wide doorways, and elevators) and spectacularly unaffordable
After several months of scouring the internet, my then-boyfriend Micah and I (we hadn’t known each other for even a year yet) decided to drive up and down the streets of Kansas City (and all its sprawling pockets) looking for any space that might work. Maybe there’d be a magic unicorn building hiding behind a big tree? We hoped. That night we drove around, listening to Vampire Weekend’s new album and talking about my upcoming French exam. The hours passed as we made our way across the city, but we hadn’t spotted one place to look into. Seemingly out of nowhere, Micah started crying. “How is it possible that this city doesn’t have any place for you to live?”
Sitting Pretty Page 17