Jeanne McArdle is pursuing a CPA in Narrative Medicine at Columbia University and writes frequently about disability and chronic illness.
Therese Wolfe’s lyrical essay “On Perseus’ Wings” (Intima, Spring 2022) echoes many of the themes of my own essay “Coming to Terms: A Metagnosis” (Intima, Fall 2022.) We both wrote of chronic illness: hers is multiple sclerosis; mine is classical Ehlers-Danlos Syndrome.
Despite many other indicia of disability, we both can walk—though not reliably enough to keep up with the people and activities around us. For both of us, walking represents the dividing line between abled and disabled, and we see ourselves on the abled side of that divide. Neither of us uses a wheelchair to mitigate our limited strength and mobility.
At least initially, I didn’t believe that I deserved a chair. I thought wheelchairs were exclusively for paralyzed people. In my mind, disability was profound, static, and visible; it wasn’t characterized by fatigue and weakness that forces you to choose from a narrow menu of activities because that’s all you can manage without collapse. But a narrowing of choices, a shrinking of existence to the little you can safely manage—that, too, is disability.
We love to slice and dice the world into clean categories, preferably ones that are easily seen. I think that is why we focus so much on wheelchairs as a marker of disability. Walking is one of our first independent acts. Walking represents freedom and autonomy. An impaired ability to walk brings up metaphorical frames of helplessness and powerlessness, echoing our cultural (mis)conceptions of disability.
Symbolic as wheelchairs and walking are, though, wheelchairs are just tools. Imagine denying yourself glasses until you were legally blind or hearing aids until you were totally deaf. Imagine waiting until you were frostbitten before putting on a pair of gloves. We should all be able to use whatever tools we need.
Wolfe seems to view her illness as a challenge to her dignity. She wishes “to stand tall and dignified.” She writes, “Dignity: that quality or state of being worthy. Yes, I want dignity and I want it badly.”
I once felt that way, too. My viewpoint now is different. Dignity is not something others bestow. Dignity is already ours, to claim and to hold. We are no less worthy when we walk unsteadily, when we fall, when we use a power chair, when we need to rest. We can be proud and command respect exactly as we are.
Jeanne McArdle is pursuing a CPA in Narrative Medicine at Columbia University and writes frequently about disability and chronic illness. McArdle administers a support group for people with genetic connective tissue disorders and hopes to use the practice of narrative medicine to help chronically ill people find and tell their stories effectively, especially in a medical context. McArdle's work has appeared in Wordgathering, The Comstock Review, and the New York Times’ Tiny Love Stories column and anthology of the same name. McArdle holds degrees from Cornell University and Siena College, and worked as a technical writer at General Electric. McArdle lives in Central NY with her husband and service dogs.