The first time my friend Ann invited me over to her house, I had to pretend I was a spy. It was a spring morning seven years ago, so sunglasses were probably the only thing covering my face. But as I looked toward her front door, up a flight of stairs partly without rails, I knew I couldn’t get to it without a little trickery.
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 farm, which I used to climb up a sloping lawn, arriving at an entrance as if putting a flag into a top. There was the time I took off my cardigan to cover my hand so I could carefully swing from the side of a cactus towards another spot. And in “the great vegetable incident of 2007,” I leaned against a row of bubbling potted plants to get me down the street.
In the case of Ann’s home, I climbed up the flight like I was conquering a boulder, hummed the Mission Impossible theme song to make myself smile, and hoped no one was watching.
For as long as I can remember, I have 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 inverted knees around the time public spaces became accessible to me. But the law is spotty in practice, and it’s not unusual for ramps to stick into back alleys or elevators to open down long corridors. As soon as it’s clear that my body isn’t as welcome somewhere as I’d like it to be, I picture myself putting on a black men’s suit, laughing and saying, “We’ll see.” (I should probably mention here that my father raised me on James Bond movies.)
As a child, I interpreted these solutions as an operation into a non-disabled world, a task best accomplished if I remained calm and focused, constantly looking for clear paths into a subway station, sports stadium, or high-rise building without causing very disturbing. The fact that I could walk for about 30 minutes before I had to rest only gave me a countdown of adrenaline pumping proportions. Finally, to blend in even more, I learned to move without any helpers whatsoever.
The housing, on the other hand, is a completely separate obstacle. There aren’t federal regulations for bungalows or brownstones to follow for housing, and wide doorways and textured floors haven’t had quite the same design impact as, say, shiplap and fiddle leaf figs. So every home I visit is unpredictable – from the harsh surroundings leading to the front door, to the amount of stairs separating rooms, to the presence of a high-sided bathtub instead of a walk-in shower. And unlike public spaces, where I can feel more anonymous, creating access in private often happens in front of a select audience.
Family members and childhood friends already know that I appreciate them carrying my plate to the table or offering an arm up the stairs from a sunken living room, but acquaintances usually have to be asked. In college and into my twenties, I struggled with how to reveal that I might need help. What is the best way to find out if a third floor apartment is a walk-up? How can I say that it is impossible for me to stand for hours? I was routinely stressed about the nearest 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 while laughing at a joke or telling a story, afraid that the intricacies of my disability would cast a frightening 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 the out-of-the-way elevators and ramps, all the sideways glances and detached formalities that come with finding a way in were just the opulent version of what I might encounter in the intimacy of a home. When I called myself a secret agent, it was because I felt that my disability was something I should celebrate.
After I first met Ann, she introduced me to a group of women who have 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 own skin, I started talking about my disability over our monthly restaurant dinners—and with their encouragement, in public with strangers. That’s when Laura sent me a text I had never received before. “Hi! I wanted to tell you before I got to my apartment that there is a staircase with rails leading up to it. Do you need help getting on top of 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 and diminishing it in the background of a gathering. This text told Laura to back off from my job as a secret spy because the plot was over: She was onto me. As a friend and host, she wanted to make sure I would have as much fun as the next guest, whether they had dietary restrictions, pet allergies, or an aversion to hearing 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 to tell me where to park, how many stairs to expect, and to call them if I need backup.
My disability was never something to be ashamed of, although it took me a while to acknowledge it. 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 am grateful for my cerebral palsy, however complicated that gratitude may be. When someone invites me into their home with a friendly acknowledgment of my disability, including any potential dangers and how they might be able to help, it’s clear that they want me to emerge as my full self when I come through the door. And as soon as I’m there, I can exhale.
(Photo from Kelly’s Instagram.)