As is true for many disabled Americans, my health-care costs resemble pipe bombs that keep blowing up my bank account, leaving it a pile of smoldering ash. As such, I can’t afford a house.
Maya Angelou once said, “Do the best you can until you know better. Then when you know better, do better.” All of us, including the disabled, of course, can do better in myriad ways. I offer my stories for the able-bodied who are interested in knowing how they can do better by their disabled neighbors.
For instance, years ago I lived in a condominium complex where the only elevator had seemingly sprung to life and acquired a mind of its own, like something out of a 1970s horror film. It frequently conked out, inconveniencing everybody, but leaving me, the only disabled occupant, stranded on the fourth floor.
The other 10 owners knew that I was legally disabled, walked with a cane or walker, and lived 40 feet off the ground. But no one ever thought to let me know when the elevator broke, despite my front door abutting the wily machine.
Because I couldn’t traverse the stairs, when the elevator decided not to work, my day would be totally upended. More than once, I had to cancel plans. My dog, in particular, was not amused.
I emailed the others and asked that they let me know when the elevator was out of service.
I received one response. It read, “Do we have to let you know every time?”
I’ve been disabled by myalgic encephalomyelitis (sometimes known by the misnomer “chronic fatigue syndrome”) for 30 years, later developed Stage 3 thyroid cancer and am rarely self-conscious about either illness.
But the absence of understanding from my neighbors back then left me feeling isolated, like I had the word “disability” emblazoned in neon across my forehead. I was the statistically aberrant one. If my schedule was held hostage to the whims of unpredictable levers and pulleys, well, it was clear that it didn’t matter to them, even after I explained that, by law, the building had to maintain its accessibility. (While the Americans With Disabilities Act doesn’t apply to condo associations, if an owner purchases a unit under the auspices that it’s accessible, the condo association cannot alter or impede accessibility.)
I thought about all this recently when a neighbor in my current building knocked on my door, unprompted, to let me know that the elevator on our side of the building was out of service.
“Thanks so much,” I said. “That was really thoughtful of you.”
“Oh, it’s no big deal,” she replied and smiled. “I just figured you’d need to know.”
We exchanged pleasantries from a safe, masked distance and returned to our respective days, but I was grateful for her insight. She didn’t act as if I wanted special treatment because I’m disabled, but understood that the elevator is my conduit to the outside world. Instead of feeling out of place, I felt at home in my home.
Perhaps even more remarkably, in an era filled with so much pain for everyone, I’ve had the great good fortune to become friends with some of my neighbors, who quickly figured out that I occasionally need physical assistance, but who never lord it over me like I’m their ward.
When Seattle had several days of snow in February, they texted me and said, “Don’t worry about your dog. We’ll walk him for as long as you need. Don’t try going out in the snow.” I was deeply moved by their megawatt dose of kindness because I already knew from experience that snow and my walker make for a dangerous combo.
And because I can’t drive, they’ve shuttled me to two physician appointments across town, saving me a small fortune in car fare. Plus, they’ve left homemade chocolate chip cookies on my doorstep, quite possibly the most helpful act of all.
While I can never reimburse them for their time, I reciprocate where I can because I don’t take advantage of anyone’s good will.
When I head to the pharmacy to pick up prescriptions, I text beforehand to see if they need anything while I’m there.
While I’m out running errands, I’ll pick up slices of gourmet pie from the nearby bakery or doughnuts from a superb little neighborhood outpost. (Yes, all of us eat healthily but, really, you can’t adequately convey gratitude with kale. No one wants to unwrap a salad.)
It’s always a little magical when strangers become friends and over the past year, we’ve found our own rhythm. I know what it’s like to live with able-bodied neighbors who don’t understand or care about disability, so it’s such a welcome change to live with those who genuinely get it. (And who also like dessert.)
More than I can convey, I’m thankful for all the ways they help me navigate and I hope their examples spark ideas in other able-bodied neighbors everywhere.