• Allies Think We Understand Ableism, but I Didn’t Until I Was Disabled

    I’ve always been close to people with disabilities, and I always thought of myself as an advocate. As a child, I learned sign language so I could talk with my grandmother, because I realized that lip reading put all the effort on her. Then when I was 10, my older sister suffered a car accident that left her permanently disabled with a traumatic brain injury, and I started to learn about helping and interdependence. And now, I’m a step mom to a wheelchair-bound, paraplegic boy with spina bifida. I’ve witnessed his barriers to access more times than I can count. I’ve carried him or his chair across unfriendly terrain in campgrounds, in old European cities, in and out of cars, up and down stairs — and witnessed other people carry him. I’ve gained perspective from having him in my life. I’ve gained a lot.

    But I never got it. Not really.

    It turned out that for me, proximity didn’t equal comprehension. I liken it to, as a queer woman, hearing well-intentioned straight people talk about how they have so many gay friends, they feel like a gay person themselves. But no. They’ve never been forced to perform their gender. They’ve never been fired from a job for having a photo of their partner out on their desk. They’ve never been chased by a carful of drunk dude-bros while fearing for their lives.

    And that was me: believing that proximity and goodwill equates to knowing. I was so confident in that knowing that I spent years researching and writing about disability (both my novels have protagonists with disabilities). Yet, I never truly understood what it was like to be a person with a disability in the world. Until I became one.

    From the age of 10, I had a fascination and a passion for going fast on two wheels. My first was not mine, it was my older brother’s — a motorized mini bike that I was not permitted to ride. But I hung around him and his friends when they rode on a circular path they’d made in the woods, in hopes I’d get a turn. When my turn finally came, I opened the throttle on the straightaway and didn’t slow down in time to make the turn. I crashed into a tree and flew over the handlebars. I was hurt, but nothing was broken and I didn’t have any major cuts. I limped back to the minibike and checked it over with terror. Shaking with adrenaline, I lifted it and started it and all was well. I finished the course more cautiously and never told my brother about the crash, for fear he wouldn’t let me ride it again.

    At age 14, I got a yellow Motobécane pedal moped. At 18, I got my first motorcycle, a red and silver Honda 550 classic. I taught myself how to ride it in the parking lot of my apartment building. It was my sole source of transportation, even during the bitter winter months. I remember riding in the tire tracks of cars on snow- and ice-covered roads to my college then, upon arriving, peeling off three pairs of gloves from my numb hands and taking at least an hour to thaw out.

    Fast-forward 22 years and I got the motorcycle of my dreams: a yellow Ducati Scrambler. When I was 22, long before the 2018 Ducati Scrambler existed, I imagined a motorcycle that looked exactly like it: same color, same curves and shape. The number one reason I was excited to move to San Diego from Boston was because it meant I could ride this motorcycle year round. We went about 9,000 miles together in about a year and a half.

    Our romance was cut short when someone hit us with his large, inflexible, metal box on wheels. The kind of vehicle that dominates roads and coughs up too much poisonous exhaust for carrying just one little body. We both knew that it should be the other way around — motorcycles should be the dominant presence on roads with cars being the rarer exception. The driver who hit my yellow Ducati and me with his vehicle told the police he didn’t see us. How could that be? After all those heads we turned?

    I’m sorry it had to end so violently, but great loves like this don’t end without tragedy.

    My dream bike didn’t survive this tragedy and I just barely survived. I survived with injuries serious enough to scare me off of motorcycles forever. The following were the longest ten seconds of my life.

    Anticipating impact, I closed my eyes and lay the bike down to the left. That’s when my left sacral-iliac joint came apart and my left thigh tore open down to the bone. Then the bike hit the car and I slammed crotch-first into the steering column, crushing my pubic bone to shards. Then I flung forward, again over the handlebars, hands outstretched, the impact breaking both arms. My body flipped over 360 degrees to land on the hood of the SUV, bleeding fast. I raised my right arm to see why it hurt so much and saw splintered bone and blood, my right hand hanging off by soft tissue. Blood coursed out from between my legs, too, and I panicked.

    A man who said he was a doctor approached me and used my bootlaces as a tourniquet. I’d almost worn my laceless Vans. He calmed me down and told me the more I panicked, the more blood I would lose. So I calmed down, I breathed with him, I stared into his face and told him how much it hurt. By the time the paramedics arrived, I’d lost so much blood, they couldn’t detect my blood pressure. They gave me two units right away in the ambulance and two more in the trauma bay at the hospital. I underwent 18 hours of surgery in total. I spent six weeks in hospitals. I was told I may never re-gain full use of my right hand, which had been re-attached. I was told I might never walk normally again and that I would always be in pain.

    The orthopedic surgeon who rebuilt my pelvis warned me I would be in a wheelchair for at least six to nine months after leaving the hospital. In preparation, I visited my home with my physical therapist and my occupational therapist, and they made suggestions for how to make it more accessible. Nearly every space was too small for a wheelchair. I lived in an in-law suite behind the main house I shared with my family, and the yard in between was now impassible for me. I called my friend who was handy and he made a path for me with plywood. But then there was the shower. How would I get in and out with two casts while in a wheelchair? And what about the toilet? There was not a single thing I could do on my own. My partner stayed with me part of the time and helped, but she had her son to take care of, too, so couldn’t do it all. I flew my mom out to stay with me and activated my network of friends to piece together increments of assistance in an effort to approximate my regular life while never being alone.

    The first time I left my house after returning home was to attend a doctor’s appointment. I was astonished to discover how wheelchair unfriendly everything is. If curbs are cut at all, they’re too far apart, causing me to have to wheel myself up a long stretch of open road until I found one. The first movie I went to see was Oscar-Nominated Shorts and I parked my wheelchair in the very back because all the closer seats were down some stairs. Then, when leaving the movie theater in my wheelchair, all the people who could walk moved faster and filled up the elevator before I could get there. I sat at the end of the line waiting for the elevator. By the time I got to the top of the line, a crowd of faces stared down at me from inside the elevator as they waited for the awkward moment to pass and the doors to slide closed. None were willing to take the stairs. None were willing to make room for a person in a wheelchair.

    Stairs were everywhere. Intellectually, I already knew about this from being about with my step son, but experiencing it first-hand exposed just how much work it is to go out and do anything when you’re a non-ambulating person. I couldn’t access my favorite massage therapist because he was on the second floor of an old building, which enjoyed official historical status that allowed it to be excused from federal ADA laws. This meant the building was not required to bear the expense of installing an elevator. I’m sure when they applied for the historical status that would grant them this exemption, they weren’t feeling malicious. They weren’t hoping to discriminate against people who physically cannot use stairs. More likely, they wanted to save the expense of installing an elevator. But being the one stuck with the reality of that decision — unable to access the second floor of the building — I wondered why, rather than qualify as exempt, they couldn’t instead be granted funding to help make their old building accessible without marring its beauty.

    The worst time was when I was alone and planning to use a rideshare service to get home. It was a noontime recovery meeting in a church I’d never been to before. After the meeting, I talked with someone for a long time while everyone filtered out. We were the only people left in the end and my new friend asked me if I wanted a ride home. “No thanks,” I said, feeling determined to do this one small thing on my own, and then I went to the bathroom. When I came out from the bathroom, the entrance to the building was closed for construction. So I went to the back exit and a small flight of stairs faced me. I wheeled to the front again and it was shuttered and closed with nobody in sight to re-open it. I returned to the back exit and tried to get creative. I was permitted to put pivot weight on my right leg, which was my only grace. Had I been paralyzed and non-weight-bearing like my step son, there would have been no way for me to exit.

    I locked the chair and used my right leg to stand and carefully lower myself down onto my butt. There on the concrete with the faint smell of urine and the cigarette butts, I pondered my next move. I couldn’t bear weight on either hand (both were in casts), so my right leg and elbows were all I had to work with. I slowly and painfully bumped down the stairs to the bottom then stood again on my right leg. Standing, holding my left leg aloft and gripping the handrail with my left (less injured) hand, I trembled with adrenaline and a film of sweat covered me. I looked up at the wheelchair and realized I had no way to get it down and get back into it. I considered struggling my way back up and quickly disregarded it, as either way, I’d have to yell for help, and I was already exhausted. I turned toward the parking lot and shouted, “Help!” Just as someone saw me and started toward me, I heard a noise and half turned to see the wheelchair coming down the stairs right toward me. I grabbed the handrail harder and braced myself for impact. The chair crashed into the back of my legs and I fell back into it. I’d almost been knocked foreword, where I would have had to use my arms to break my fall and re-injure them both in the process, or else smash my face into the concrete.

    Sooner than predicted, my orthopedic surgeon gave me the green light to begin walking again with a platform walker after spending only three months in a wheelchair. The walker posed a similar yet altogether distinct set of challenges while navigating public places, crossing streets, and attempting to access elevators. Inching across the street at the pace of molasses was particularly anxiety-producing, as my PTSD-riddled imagination could feel the impact of a car, see the blood, the dismembering. But thankfully, I didn’t have to spend too much time with the platform walker before I was permitted to put some weight on my left leg again. And several weeks after that, I walked again, unassisted.

    My first steps on my own two legs were slow and with a severe limp. Still, it felt like more freedom than I’d ever known. More, even, than I remembered feeling while speeding along on two wheels.

    Despite knowing intellectually what many people with disabilities lived with, I had no real idea what it was like for people who aren’t ambulatory. Just because I was temporarily disabled doesn’t mean I could ever understand what it’s like for my stepson, my sister, my grandparents. Their barriers to access don’t ever let up. And the irony is that all of us are really only seconds and inches away from fully comprehending that.

    The thing about disability that I never really understood until I experienced it is that there is no escaping vulnerability. There is no escaping the necessity of asking for help. It was a constant exercise in both humility and confidence — the ability to self-advocate by clearly stating my needs and what kind of help I required. This was a proverbial double-edged sword, because as difficult and time consuming as it was to do anything or go anywhere, I was able to experience meaningful moments of interdependence with family, friends, and perfect strangers. In the act of needing help and being helped, we feel the presence of something far greater than the simple sum of its parts.

    I know a little better now about the challenges that the most vulnerable members of our communities face every day. It’s easy to feel disdain for the current federal administration’s blatant discrimination in favor of able-bodied people (and white people, and wealthy people, and straight people). And yet, it’s but a mirror, reflecting a broader sentiment of American culture. And all able-bodied people, well-intentioned or not, are complicit. From city planning to architectural design, the world is a hostile environment for a person with limited mobility. Most architects and engineers who create the world we move around in do not take different abilities into consideration. Ableism is woven into urban spaces and the minds of able-bodied people as deeply and indestructibly as white supremacy and patriarchy. Gravity, even. How would environments be designed if there were not this ever-present, predictable force at play? What if it wasn’t at play for everyone?

     

    Elizabeth Earley is the author of two novels: A Map of Everything, a Lambda Literary Award finalist, and Like Wings, Your Hands, which won the Women’s Prose Prize at Red Hen Press and the American Fiction Award for best LGBTQ novel. Earley is also an editor at Jaded Ibis Press.

     

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