On gender, disability and access [ellie pourbohloul]
The condition of truth is to allow suffering to speak.
– Theodor Adorno
Sarah Jones (1) holds a vision cane in her left hand and a four-prong cane in her right to guide her way into my office. I connect her right arm with my left to stabilize her, and feel a dampness soaking through her polyester shirt. One hundred and sixteen feet and three minutes later, we arrive at the office. Sarah leans her vision cane and walking cane against my desk and uses her hands to locate the armrests on the chair. She slowly takes a seat. She tells me that she navigates her home and city on her own. Blindness overcame her several years ago. Sarah’s husband died last year, and her children tended elsewhere. A doctor’s note says in hurried scrawl that she is fine to get around the city on her own without help.
Every so often Sarah’s lips uncontrollably curl downwards as she tells me her story. Her feet, hips, and spine have been racked by neuropathy and arthritis for almost a decade. A slight shift in her seat sends a jolt through her whole body that interrupts the cadence of her speech. Her voice comes through even and thin. Monotone and sparse, ghostly hypnotic. And underneath that, a sadness her voice could almost contain.
In helping persons with disabilities gain access to public services, I witness the ubiquity of exclusion. How a confluence of social forces— economic, political, and otherwise— act upon differently abled bodies to mark them as such and impede their full participation in the physical and social worlds of non-disabled persons (2). Social systems provide enhanced access and special privileges to those conforming with cultural standards of beauty, intelligence, and fitness (3). And yet, disability is a condition you will experience if dying does not take you first. It allows us to understand the fluidity of identity and that our bodies are always in transition (4). When we take this for granted, we allow and enable demarcations of “their” disabled bodies from “our” able-bodied selves.
There is a particularly challenging space occupied by women with disabilities. Disability and the condition of womanhood have historically been understood as the departure from a valued norm, with inherently inferior embodiment. Aristotle writes: “Anyone who does not take after his parents is really in a way a monstrosity… The first beginning of this deviation is when a female is formed instead of a male” (5). The tangible effects of patriarchy extend to current conversations on healthcare. Recent ACA debates on whether and how much to insure human life and vitality disproportionately affect women and persons with disabilities. Where women and persons with disabilities are socially disadvantaged, there are socially generated meanings assigned to gender and disability that enable disadvantage. Everyone shares some responsibility for social barriers to minorities accessing resources such as healthcare (6). I am often confronted with how much progress can be made and how much more work there is to be done.
At the end of the assessment, I ask Sarah more questions to try to understand the shape of the world she sees. "When I see you, I see shades of grey.... I can see the figure of your face in the distance, but I can't really see it up close. I know you are there. When I look at your face, I see different colors that are all smudged together, like pastels that have been all mixed up.” I listen without responding, because speaking becomes difficult. Sarah’s voice breaks again, and we sit together in silence. She touches my hand, as if to make sure that I am still there, that I am not a trace of someone else. I imagine her touching everything in her home the same way she touches my hand. Sarah apologizes, and tells me she doesn’t trust her senses anymore— the ghosts that live in her body now.
1 Name withheld to protect patient privacy
2 Bill Hughes, Disability and the Body (Blackwell Publishers, 2002), p. 71.
3 Rosemarie Garland-Thompson, Integrating Disability, Transforming Feminist Theory (Indiana UP, 2011), p. 18.
4 “Unless we die suddenly, we are all disabled eventually. Most of us will live part of our lives with bodies that hurt, that
move with difficulty or not at all, that deprive us of activities we once took for granted or that others take for granted,
bodies that make daily life a physical struggle. We need an understanding of disability that does not support a paradigm of
humanity as young and healthy.” Susan Wendell, Toward a Feminist Theory of Disability (Routledge, 1997), p. 263.
5 Rosemarie Garland-Thompson, Feminist Theory, the Body, and the Disabled Figure (Routledge, 1997), p. 279.
6 Rafiya Javed, In All Fairness. Accessed 20 August 2017. Available here.
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