Disability: The Amputee Cyclist’s Art of Self-Repair

Posted Thursday, 23 May 2019 ‐ The New York Times

I was squiring a visitor from Switzerland around Berkeley, Calif., each of us on one of my bicycles. We crossed the U.C. campus on a Saturday — cyclists can ride across the school’s famous Sproul Plaza on weekends — and we breezed past what appeared to be a fair: booths, tents and banners had been set up on the plaza in celebration of the university’s contributions to the advancement of various technologies. One of the banners caught my eye: “Do you remember when prosthetics weren’t mind controlled?” I hesitated for a second but we were headed for lunch, so I didn’t ask for a halt.
All of my bikes (I have three) have been modified for me — on each set of handlebars, the right lever controls both front and rear brakes. I lost my left arm, as people say, in a backyard accident, a bad fall, more than 50 years ago and use an old-school prosthesis. It’s an over-the-back harness, blue plastic socket, two-speed (locked and unlocked) elbow, a stainless steel “Farmer’s Hook” (Hosmer Model 7LO), with which I’ve done light construction, cooked many meals for many people, operated railroad trains and biked extensively in upstate New York and New England, Britain and, of course, California. When I was in my 20s I began taking multiday bike journeys — touring— and I’ve continued that practice or sport into the present day. I like (or need) to ride far enough on a tour to see the landscape change.
I’m in my 60s now. Usually I ride alone. Sometimes, if rarely, I fall in with a companion for an hour, or a day. On a recent afternoon ride in the Berkeley hills I found myself talking with a man somewhat younger than me. He was amazed — as some people are, “because of your handicap” — that I was riding at all, and as we talked and climbed the topic of touring came up and he was quick to inform me that it was a thing sadly beyond my capabilities, though we had just met. “Typically, disability is viewed as a tragedy,” as my friend the poet Jennifer Bartlett has observed. In her work she notes that disability is no singular thing, no easy appraisal.
No one is ever only one designation. I am rolling disability, Berkeley professor, poet and essayist, father — in no particular order. And I write as a child of the black middle class, the child and grandchild of black doctors and teachers. Looking back, I can see that my upbringing demanded that losing a limb at the tender but quite conscious age of 10, when Jim Crow was still the law of much of the land, be no life-altering tragedy. My sister and I were fitted, from birth, with different expectations for ourselves than the ones that white, mainstream 20th-century America had for us, all this in spite of the thousand ways that culture had of humiliating or debasing us. In droll response to those, James Weldon Johnson wrote in his 1912 book “The Autobiography of an Ex-Colored Man,” “It’s no disgrace to be black, but it’s often very inconvenient.”
That’s what I was taught as a black doctor’s son in the 1960s, that my missing arm was, that very term, an “inconvenience.” (The word was presented to me as a standard; I encountered Johnson, and his layers of irony, much later.)
All of this emerges in various ways in my writing. In the poetry, I do not address disability, at least I do not do so obviously. It is not a topic. In prose, though, my having lost an arm appears more directly. The title of the first book of essays, “Into and Out of Dislocation,” is a quote of a doctor’s appraisal of my left shoulder joint after a cycling accident. (“He gently manipulated the shoulder [and noted] that it moved with surprising ease, perhaps because of the amputation and the weight of the prosthesis, he said, into and out of dislocation.”)
And in a more recent essay collection I address how having a prosthetic arm affected the work I did — in my 50s, my railroading years — on trains: “Is this disability? My mechanical-man-self ensconced in another machine moving across the surface of earth. My cyborg, my amputee, my centaur, my rolling man. Type of the modern! emblem of motion and power! pulse of the continent!” (The italics are from Whitman’s “To a Locomotive in Winter.”)
In many of the testimonies I see written by amputees on the internet these days, I find stories of overcoming the adversity of limb loss. I salute my brothers and sisters and add this column to that tradition. Long-distance cyclist, “difficult” poet, guide to visiting Swiss nationals, train guy.
(But what of the stupefied stares and casual, banal ableism? And that raft of thoughts-that-would-shame-hell and all the varieties of things that some of us keep close to the vest? This column isn’t about those.)
The week before our ride across Berkeley, the ride with which this piece begins, I’d felt the cable that locks and unlocks my elbow snap. I got inside the housing with a flat-head screwdriver and replaced the broken elbow cable with a length of derailleur cable I had in my cache of bike parts. I found an anchor, crimped it into place against a buckle on the upper part of the arm, duct-taped everything into a sleek package and was good to go.
Since I passed that “mind control” banner on Sproul Plaza last year, I’ve read about the science of surgical implants and neural control systems. It’s all quite interesting, but I doubt I could fix such an arm when it broke, and everything breaks. I’ve mounted field repairs on my current prosthesis with materials from bike shops, hardware stores, shoe repair businesses and — once — a lobster pound.
These days, when I stare into my computer screen, I see the sleek metal fingers of high-tech prosthetics and compare them with how I manage the world, the flesh and the devil with my old-school rig and wonder what, in terms of day-to-day tasks, is really gained. (I use a steel farmer’s hook and ride a steel bike. ‘Steel is real’ is the retort to those on lightweight aluminum or carbon fiber machines.) My arm’s design dates from the years after World War I, and I can do rather much of the same stuff that the up-to-the-minute people can do in the videos.
But I guess it depends on what you want or need. And — most important — what your insurance, if you’re fortunate enough to have insurance, will pay for.
I think that James Weldon Johnson’s sentence on inconvenience, published a hundred years ago, has lost no relevance as time has progressed. My decades of work at historically white universities has deepened my understanding of inconvenience in ways far beyond the scope of this column. The inconvenience of having a prosthetic arm that I can usually fix myself, at least temporarily, is — like prose — a different animal, but like color it’s a profoundly visible one that informs my passage through various landscapes, locomotive cabs and English departments.
Is this disability? Last August, on my most recent tour, cycling alone through the beauty of Big Sur, I wasn’t thinking about my right-controlled brakes or varieties of inconvenience or layers of irony. I wanted nothing more than to keep climbing.
C.S. Giscombe is a poet, essayist and professor of English at University of California, Berkeley. He is the author of several books, including, most recently, “Border Towns” and the forthcoming, Similarly, a poetry collection.
Disability is a series of essays, art and opinion by and about people living with disabilities. The entire series can be found here.
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Tag: #Amputation #Prostheses #BicyclesAndBicycling #Disabilities

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