People often confide in me: deeply personal stories about bad accidents and tragedy averted, extensive outpourings about aunts with Multiple Sclerosis or fathers with Parkinson’s. I hear them in the security line at the airport from the agent tasked with checking me, or in a taxi after breaking down and storing my wheelchair with the driver, or, sometimes, simply waiting to cross the street. I have become a lightning rod, a rolling forum for discussions about the fragility of the human condition. The conversation starts with disclosure, “my grandfather had polio,” then moves to a litany of lessons learned or adventures recounted. I nod and then add my perspective, though not everyone is looking for a response. Sometimes strangers query my condition, and I’m no longer offended by direct probes. How did it happen? Will you get better? I keep my answers short and straightforward. And then I wonder why they wonder. The frequency and persistence of these questions points to the paucity of coverage about disability and impairment and the lack of opportunities for people to talk about how they coped or helped with illness and accidents. Enter the wounded stranger with an empathetic ear.
Living in a compact urban area accompanied by an appealing dog has made me a bit of a public figure on my small patch of the planet. To be out and about using a wheelchair is to be a spectacle, an anomaly, a source of fascination. I don’t kid myself. I am representing. So I remind myself that people may be repelled by me or attracted to me. I tend to be the token wheelchair user in the restaurant, the bank, the gallery. I am cool with that, or I’ve become cool with that. One terrible, horrible, no-good, really bad day, I snapped at a young woman giving me the once over as I struggled up a tough curb cut. Her surprised response gutted me. “Oh! Sorry! I was trying to figure out how to ask if you needed help.” There is something to be said about good intentions. Something good. So we talked about etiquette the way I see it. Always ask what might be needed. Never assume you know. Don’t anticipate a request. Be careful with your help.
Traveling through small towns in Italy further changed my perspective. Italians seem to stare. At everyone. Especially foreigners. And definitely Americans in wheelchairs trying to negotiate cobbled streets or Tuscan hill towns. Older men caught my eye and signaled something like approval, or so I imagined. Restaurant owners would send out their strongest waiters to lift me over front steps. Bartenders offered glasses of grappa on the house. Farmers insisted on a few extra tomatoes at the weekly community market. I felt recognized for the effort I was making. No one said, “I share a bond with you because pain and sorrow touched my life, too,” but that’s my read.
It’s naive for me to think I can stealthily go about my business unnoticed. Why would I want to when there is so much to share and so few occasions for sharing? I’m a reminder. A memory jolt. So bring on the memories and the awkward questions. I’ve had practice answering children who want to know whether or not my legs work. I am open to showing anyone how my wheelchair functions. They can even take it for a short spin, if they seem trustworthy. It’s my small attempt to normalize who I am. So I leave some extra time for exploration. I am more patient getting from place to place these days. I don’t do this out of charity but inclination. What might I learn? Who could I teach?
And who are we if not the keepers and compilers of each other’s stories?
You’re not a “wounded stranger” but a Seattle Spartacus. One of your best stories, Randy —loved it.
Beautiful article. Captures perfectly the mobility issues you face and how your fellow human beings should/can respond. The depth of your understanding of both sides of life’s “coin” is outstanding and to be applauded. It was not achieved without much time, effort, true grit and determination.
Love Papa and Mom
This is powerful writing, Randy. Our cities have been so inaccessible, our interactions with people with varying challenges so limited, we are clueless in our interactions. It is hard being a pioneer, the one out in front who clears the brush of our cluelessness, but I am grateful to you for being there and lighting the path behind you.
Hello Randy!
Thank you so much for sharing this.
I live with “invisible disabilities”, as they call them. As I read this, one thought I had was, “I experience some of the same challenges as him, but because my disabilities are not visible, I don’t have the same opportunities…(insert 🙁 here.”) BUT you’ve got me thinking anew about that. I DO have similar opportunities, but I am still learning how to sail those waters. My health challenges are relatively recent (developing over the past few years) so I’m still on a fairly steep learning curve. I often semi-cringe and steel myself when people who are acquainted with my health journey ask the array of questions I get. I am often on guard, since I experience many of these interactions as draining, or feel like the person isn’t really present and has their own well-meaning but frightened or judgmental agenda. I sometimes think I scare them, as in “THAT could happen to me too.”
Thank you SO much for sharing your experience and wonderful writing.
The next time someone “asks”, I will try to remember, take a deep breath and ask myself “What is really happening here?” and try to be open to it.
In gratitude,
Palma
Sterling, you’ve reminded me of the famous “I am Spartacus” scene, a testament to the strength of loyalty. That’s a lesson I learned well from you, Mom and Papa. So thank you. I constantly seek guidance, Cathryn and Palma, to help me transition. But many times I feel like an immigrant, unsure of myself in a new country with bewildering rules. There have been pathfinders like Ed Roberts, Simi Linton, and Scott Rains who I’ve studied and read and met, all of whom have helped me figure out what might be abiding and universal about my situation. I’m so happy to hear that what I write matters and may make a difference.