The first time my friend Anne invited me 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 partly railing staircase, I knew I couldn’t get through without a little ingenuity.
I took a deep breath and looked around. Were there any sticks I could rely on for balance? I once found strong on the edge of a yard on which I used to climb a slashing weed, and came into a doorway as if I were sticking a flag on top. There was a time when I took off my cardigan to cover my hands so I could very cautiously push myself from the side of a cactus toward landing another address. And in “The Great Evergreen Incident of 2007,” I leaned on a row of cascading pot plants to lead me out onto the street.
In the case of Anne’s house, I climbed the plane as if I was climbing a rock, honking the Mission: Impossible song to make myself smile and wishing no one was there to watch it.
For as long as I can remember, I let my imagination protect 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 at the same time that public spaces were required to be accessible to me. But in practice the law is intermittent, and it is not unusual for ramps to go into back alleys or elevators to open up long lanes. Once it becomes clear that my body isn’t welcome where I want it to be, I imagine myself wearing a men’s black suit, smile, and say, “We’ll just see that.” (I should probably mention here that my father raised me on James Bond films.)
As a child, I interpreted these solutions as practical in an undisabled world, a task that is best done if I remain calm and focused, constantly looking for clear paths in a subway station, sports field, or high-rise without causing too much disturbance. . The fact that I could walk 30 minutes before I needed to rest just gave me a countdown to my adrenaline-pumping rates. Eventually, to blend in more, I learned how to move around without any helpers at all.
On the other hand, homes are a completely separate obstacle. There are no federal regulations for bungalows or brownstones to follow on accommodations, and wide doorways and woven floors didn’t quite have the same design effect as shiplap and fiddle leaf figs. So, every home I visit is unpredictable – from the hard surfaces leading up to the front door, to the amount of stairs separating rooms, to having a high-edge bathtub instead of a walk-in shower. And unlike in public places, where I feel more anonymous, creating access in private places is often done in front of a specific audience.
Family members and childhood friends already know I appreciate them carrying my plate to the table or offering their arm up the rungs of a sunken living room, but acquaintances usually have to be asked. In college and in my twenties, I struggled with revealing how I might need help. What is the best way to tell if a third floor apartment is a waiting room? How do I say that it is impossible to stand for hours on end? I was routinely nervous about the nearest available parking, the nearest open seat, and how much to fill my glass until I could still carry it on my own. I tried not to let these considerations appear, for I laughed at a joke or told a story, afraid that the intricacies of my disability would cast a frightening shadow on the emerging friendships and encounters. So, most of the time, I didn’t say anything.
My understanding of my disability in public was also how I learned to accommodate it in private. All those lifts and ramps out of the way, all the side looks and separate formalities that come with finding a way in, were just the mega version of what I could encounter in the intimacy of a home. When I called myself a secret agent, it was because I felt my disability was something I had to shroud.
After I first met Anne, she introduced me to a group of women who have become a support system for jobs, relationships, and where to find the best pizza. As we got to know each other, and became more comfortable in my own skin, I began to talk about my disability during our monthly restaurant dinners—and with their encouragement, openly with strangers. That’s when Laura sent me a message I’ve never received before. “Hey! I wanted to tell you before coming to my apartment that there is only one set of stairs, with rails, leading to it. Do you need help getting from your car to the top floor?”
I know it sounds silly, but I’ve been looking at these words for a long time. I was used to solving the access puzzle on my own, and reducing it to the back of the pool. This text was Laura telling me to retire from my job as a secret spy, because the deed is over: She was on me. As a friend and hostess, she wanted to make sure I would have just as much fun as the next guest, whether they had dietary restrictions, pet allergies, or reluctance to hear spoilers about a new show.
When I told her how much this check-in meant to me, she shrugged her shoulders 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 to expect, and to call them if I need a backup.
My disability was never something to be ashamed of, although it took me a while to realize it. It’s the part of my life that boosts creativity, builds empathy, and allows me to experience the world through a hard-earned lens of unfair facts and accidental totality. I am grateful for cerebral palsy, such gratitude is complicated. When someone invites me into their house with a gentle acknowledgment of my disability, including any potential risks and how they might be able to help, they clearly want me to be completely myself as soon as I walk in through the door. And once I’m there, I can exhale.
(Photo from Instagram Kelly.)