Here’s a story of my fallibility and my fear, and my figuring out how I might become a halfway-decent ally.
At 4:30am this morning, I sat in a hotel shuttle, waiting to head to an airport. With my backpack on my lap, I watched a white SUV pull up to the hotel entryway, and a late-middle-age man came out. He unloaded bags. A much younger woman with waist-length black hair also came out of the car. She ran to the shuttle, hopped in, put a handbag on a seat, sat down, then hopped out. She ran back to the SUV, ran back to the shuttle, sat down, left again. Each time she fled, she left behind the smell of her sugar-cookie perfume. The red digital clock on the dashboard ticked past the scheduled departure time. The shuttle driver was talking to the middle age man. The woman returned, wheeling a leopard suitcase.
I figured the middle-aged man was her Uber driver (because two days ago I just came into the year 2009 with my first Uber ride.) The woman finally settled into the shuttle, and the shuttle driver started the engine, and we were on our way, ten minutes behind schedule.
But the shuttle driver drove slowly through the parking lot, scanning the cars. “Oh,” the driver said, sniffing a quick laugh through his nose. “He found a handicapped spot.” The driver was looking to his left. I saw what he saw.
The white SUV was in the sole remaining “handicapped” parking spot, and the late-middle-age man came out of it, jogging to the shuttle.
“Thanks for helping us out,” the man said when he entered the front seat of the shuttle. His hair was the kind of pinkish orange dyed for hopes of strawberry blond. The wrinkles on his face said gray hair would have matched better. As we drove past the white car, I saw that he had no handicapped license plate. No accessibility placard.
“No problem,” the driver said.
We kept driving through the very, very large parking lot, and I noticed that nearly every spot was indeed full, but there were a few available spaces peppered far from the hotel’s entrance.
“We have a six a.m. flight,” the man said to the shuttle driver with some urgency. As in, This is my problem and now it’s yours too.
“Not to worry,” the driver said. “It’s eight minutes to the airport.”
Then the man started talking about his work. “I do business in a lot of countries with dictators,” he said, “and dictators have to….” The shuttle engine muffled the rest.
I wondered what could possibly follow such a verb. Dictators have to work extra hard? Dictators have to be in bed by 11? Was he about to detail the best practices of dictators? The troubling working conditions when you’re the overlord of a nation?
It was 4:40 am, but I was stewing, and I felt in my gut the fiery urge to act.
Indignant Me wanted to reply first: Did you just park in a handicapped spot against the law?! Did you just hog the sole spot near the entrance, the spot guarded by law for someone who needs it, because you think your time is more precious?
I didn’t say this. In moments like these, I’m highly confrontational…but only in my head. I suffer from a conflict-averse disposition.
Gentle Me conjured up this old trick: Sir, I believe you forgot to put your handicap placard on your rearview mirror. This method gives people the benefit of the doubt, and offers them the possibility to rewrite their wrong, but I rarely have the courage even for this. Also, we were already headed to the airport at 45 miles an hour. The white SUV would stay parked where it was for days.
What do you do when your insides want to revolutionize the world but your outsides won’t let you? When you see that things aren’t right but you’re terrified to say so? If you’re like me, you even get shaky before you call your senators. You have to take deep breaths as the phone rings. You let out a huge sigh of relief when it’s done. How can you be a good activist when you’re conflict-averse?
Now’s a good time for me to tell you where I was traveling from—an annual writer’s conference called AWP, which has for years been notoriously inaccessible to writers with disabilities. I observed plenty of improvements at this year’s conference. There were panelists taking seriously the importance of large-print handouts, speakers distributing copies of their talks, moderators repeating questions into the mike.
But I also listened to disabled writers describe a host of problems—among them, a dearth of technology accommodations, not a single keynote speaker (out of 42) identifying as physically disabled, and a convention center entryway made almost entirely of stairs—which, if I’d made my way in this world by wheels, would stand as a hostile middle finger to my presence.
As Michael Stipe sings, You can’t get there from here.
On the day that I left the conference, I read this tweet from Disabled and Deaf Uprising, an anonymous activist collective:
Dear writers at #AWP18 who do not have disabilities/are not Deaf: Plz call the access hotline when the escalators are broken, the parking garage is full, there are no shuttles. Plz ask AWP “why are there no disabled keynote speakers?” Plz start showing up for us.
Three years ago this winter, my daughter Fiona first exited a building on her own. I watched as her one-and-a-half-year-old sister plowed forward on a sidewalk, and Fiona trailed behind with her walker. My arms were empty. It was the first time in nearly 4 years that I left a building without carrying someone.
Gradually she learned to walk without that walker, so yeah, the world of stairs is more accessible to my family now. But when I started raising a kid with a body on the fringes of the bell curve, something happened. That bell curve, with its obsessive cradling of and cooing at The Norm, suddenly gave me the creeps–as did the medical world’s worshiping of it. And the voices of people who live on the fringes of that bell curve, or who fly above it, became not just important but vital for me. Sanity saving.
As a parent to a kid with disabilities, and as a writer about ableism and the body and the way our culture reads bodies, but also as a person who is mostly not disabled, I try to be a good ally. This means I try to be a good listener. And what I hear, when I’m tuned in, are all the ways the world isn’t right, isn’t accessible, for bodies that exist outside The Norm.
How to be a good ally? I appreciate the reminder from Disabled and Deaf Uprising that good allies aren’t just informed: they speak up.
But God, how I hate the adrenalin-induced shakiness. My blood sugar can crash just rehearsing the things I never say.
The shuttle driver pulled up to the airport. The pinkish-orange haired man got out first and opened the door for his young companion. “Come on out, my princess,” he said, and offered his hand. They disappeared.
Once I got settled at my gate, I made the call. I was still scared and shaky, because that’s how I’m made. And I also wondered if this was futile—I imagined whoever waited at the hotel desk at 5 am would not eagerly join me in disability activism. But I decided I’d appeal to corporate interest. It occurred to me that the man was probably using the hotel as a free parking and shuttle service, because nobody needs an airport shuttle from a hotel when they also have a car.
“Oh!” the male voice on the other end of the phone replied when I explained the situation. “Thanks so much for telling us.”
“He’s boarding a plane,” I said, “so that car will be clogging up your handicapped spot for days.”
“No, I really appreciate it,” he said, and I could hear in his tone that he did.
When I got off the phone, I felt a little amazed. Amazed that it had worked, but also amazed at how long it had taken me to conjure this plan: nearly the entire 10-minute shuttle ride. Creative activism isn’t natural for me. My knee-jerk reaction is rage. Yell at the man. Shame him. How dare you? Call him out among the shuttle riders. You ableist, entitled asshat. Again, I only do this in my head. The anger shocks and then fatigues me, ultimately rendering me limp and despondent.
I think our culture primarily offers us rage and opposition as emotional postures for change. Tweet angrily. Tag your enemies. Shame them. Call them out. Or maybe this isn’t culture but biology, our own pituitary gland squeezing out its flight or fight response.
But shame is a useless change agent, as plenty of studies cite. It’s a weapon, a knife-slice into a person’s psychology and soul. Thanks to people like Jon Ronson and Brene Brown, we know shame is toxic. And what I want, in advocating for more elevators at a convention center or more (or any) disabled writers in the position of keynote, is not a more toxic world but a more humane one.
So maybe we’re left with something better than rage: creativity. Clearly I’m not great at this, if my most creative response thus far has been dialing the number for a hotel lobby. But I’m inspired by the idea. At an AWP panel on “Praise for the Disabled Body,” writer Cade Leebron commented that able-bodied writers should spend less time imagining the lives of disabled characters–as is often the case in novels and films–and more time imagining worlds that are fully accessible to people with disabilities. In other words, don’t spend your imagination inventing fictional characters that constrain and oppress. Spend it inventing a real world that enables and includes. It was a strikingly beautiful charge.
When I finally landed in my home airport that day, I was greeted with classical music and the sculptures of Robert Hite, whose work you saw above. Using reclaimed wood and metal, Hite makes weird, somewhat surreal houses and plops them into rural landscapes. The houses look both artful and makeshift. They are wonky and whimsical and even a little Seussian. If they were life-size, they would not be, in any way, accessible. They are in no way models of “universal design.” But—or rather because of that—I saw in them a mockery of our own absurd attempts at building our world, and I felt a nudge toward imagining a better one.
Creativity, in other words, might save us.