The first time my friend Ann invited me over to her house, I had to pretend I was a spy. As I spotted her front door, up a staircase partially without rails, I knew I couldn’t get to it without a little ingenuity.
I took a deep breath and looked around. Were there any sticks I could lean on for balance? I once found a sturdy one at the edge of a yard that I used to climb up a sloping lawn, arriving at an entryway as if I were sticking a flag into a peak. There was the time I took off my cardigan to cover my hand so I could gingerly fling myself from the side of a cactus toward the landing of another address. And in the “great greenery incident of 2007,” I leaned on a line of cascading potted plants to get me down to the street.
In the case of Ann’s home, I climbed the flight as if I were scaling a boulder, humming the Mission Impossible theme song to make myself smile and hoping that no one was around to watch.
For as long as I can remember, I’ve let my imagination shield me from the challenges of living with a disability. I was born with cerebral palsy three years before the Americans With Disabilities Act was passed, so I had to learn to walk on rolling ankles and inward-facing knees around the same time public spaces were required to become accessible to me. But the law is spotty in practice, and it’s not unusual for ramps to jut into back alleys or elevators to open down long corridors. As soon as it’s clear that my body isn’t as welcome in a place I’d like it to be, I picture myself putting on a black men’s suit, smirking, and saying, “We’ll just see about that.” (I should probably mention here that my dad raised me on James Bond movies.)
As a child, I interpreted these workarounds as an operation into a non-disabled world, a task that was best accomplished if I remained calm and focused, constantly looking for clear pathways into a subway station, sports stadium, or high-rise building without causing too much of a disturbance. The fact that I could walk for about 30 minutes before needing to rest only gave me a countdown of adrenaline-pumping proportions. Eventually, to blend in even further, I learned how to move without any aides at all.
Homes, on the other hand, are an entirely separate obstacle. There aren’t federal regulations for bungalows or brownstones to follow for accommodations, and wide-set doorways and textured flooring haven’t had quite the same design impact as, say, shiplap and fiddle leaf figs. So, every home I visit is unpredictable — from the hardscapes leading to the front door, to the amount of stairs separating rooms, to the presence of a high-edge bathtub rather than a walk-in shower. And unlike public spaces, where I can feel more anonymous, creating access in private is often done in front of a select audience.
Family members and childhood friends already know that I appreciate their carrying my plate to the table or offering an arm up the steps from a sunken living room, but acquaintances usually have to be asked. In college and into my twenties, I struggled with how to disclose that I might need help. What’s the best way to find out if a third-floor apartment is a walk-up? How should I say that it’s impossible for me to stand for hours on end? I was routinely stressed about the closest available parking, the nearest open seat, and how much to fill my glass so I could still carry it on my own. I tried not to let these considerations show, as I laughed at a joke or told a story, scared that the intricacies of my disability would cast an intimidating shadow on budding friendships and meet-cutes. So, most of the time, I said nothing.
My understanding of my disability in public was also how I learned to internalize it in private. All of those out-of-the-way elevators and ramps, all of the sideways glances and detached formalities that come with finding a way in, was only the outsized version of what I can encounter within the intimacy of a home. When I called myself a secret agent, it was because I felt my disability was something to shroud.
After I met Ann for the first time, she introduced me to a group of women who’ve become a support system for careers, relationships, and where to find the best pizza. As we got to know each other, and I became more comfortable in my skin, I began to talk about my disability over our monthly restaurant dinners — and with their encouragement, publicly with strangers. That’s when Laura sent me a text I had never received before. “Hey! I wanted to let you know before coming to my apartment that there’s one flight of stairs, with rails, leading up to it. Do you need help getting upstairs from your car?”
I know it sounds silly, but I looked at those words for a long time. I was used to solving the puzzle of access on my own, diminishing it into the background of a gathering. This text was Laura telling me to retire from my work as a secret spy, because the act was up: She was on to me. As a friend and host, she wanted to make sure that I would have as much fun as the next guest, whether they had dietary restrictions, pet allergies, or a reluctance to hear spoilers about a new show.
When I told her how much that check-in meant to me, she shrugged and said, “I just wanted to make sure you could be here.” Since then, Ann and others have sent similar texts letting me know where to park, how many stairs I might expect, and to call them if I need backup.
My disability was never something to be ashamed of, even though it took time for me to recognize that. It’s the part of my life that fosters creativity, builds empathy, and allows me to experience the world through a hard-won lens of unfair truths and casual inclusivity. I’m grateful for my cerebral palsy, as complicated as that gratitude may be. When someone invites me into their home with a kind acknowledgement of my disability, including any potential hazards and how they might be able to assist, it’s clear that they want me to show up as my full self once I get through the door. And as soon as I’m there, I can exhale.
Kelly Dawson is a writer, editor, and media consultant. Follow her on Instagram and Twitter. She has also written about making friends and disabled motherhood.
P.S. “Four things I wish people knew about disability,” and what’s the nicest thing anyone’s ever said to you?
(Photo from Kelly’s Instagram.)
Link to original article on https://cupofjo.com/2022/09/22/disabled-friendship/