Off Limits: When Desire for Intellectual Access is Ruptured
From the Series: Disability as Rupture
Salih Bey was a 60-something-year-old man with beautiful, glassy blue eyes hidden under many wrinkles and bags. His face was completely expressionless. The only time I saw something close to a gesture was his attempt at a failed smile. It was as if his muscles had forgotten what they were supposed to do. His face was scruffy with grey stubble, and his shortish hair had not been cut or combed for a long while. The back of his hair was flattened like a giant meteor crater—a residue of the hours spent on a pillow. Over the 10 days that I saw him he wore the same pale pink fraying shirt. His bare feet were halfway pushed to the front of the cheap plastic slippers he wore all the time. There was a cannula inserted in his right wrist to enable vascular access for the electroconvulsive therapy (ECT) he was receiving four times a week. Whenever Salih Bey was not in bed, he was dragging his feet at an excruciatingly slow pace in endless loops through a corridor of not more than thirty meters.
In April 2022, I conducted ethnographic fieldwork over six days and three nights at a psychiatry ward in Mediterranean Turkey. Based on prior research, I thought I would find some form of resourcefulness, resistance, creativity—the much-cherished aspects of disability which are often the focus of disability anthropology—in this fieldsite, too. But when I arrived, I was confronted with something else. As a disabled ethnographer working in the field of disability studies, I am used to ruptures. I have experienced how disability can interrupt traditional ethnographic methods. For example, with my rheumatic joints I often can’t write fieldnotes as quickly as I need to or at all. Participant observation has also been challenging since it involves actions that I either can’t do or can’t do without pain. But this time, I was faced with something new: that which resists my desire for knowing.
It was not that there were no stories for me to write about; there were too many. There was the story of Salih Bey walking aimlessly while simultaneously claiming that his legs melted (“Ayaklarım eridi”); the Salih Bey in the patient history summarized by the resident who noted “he continuously tries to make himself look bad”; the Salih Bey sitting in a room full of doctors repeatedly saying, “I am done [with life]” (“Ben bittim”); the Salih Bey that the nurses caught secretly eating on mornings when he was scheduled for ECT for which he was repeatedly told to fast. What then was Salih Bey’s story? Was he really finished with life? What about his willingness to find cunning ways to dodge ECT or to walk no matter how excruciatingly? Did he really think that his legs did not exist? What was Salih Bey’s reality? Most importantly, how could I tell what reality was and whether and how it differed from his?
In Academic Ableism, Jay Dolmage (2017) traces how the contemporaneous historical developments of such “total institutions” as North American universities, on the one hand, and psychiatric hospitals, asylums, and almshouses, on the other, are bizarrely similar, yet profoundly different. Both sets of institutions, he writes, are “fully removed” from public space and architecturally confining, but “the subjects in…the college, are elevated. The inmates in the other spaces are confined. Importantly: one studies; the other is studied” (4). I found myself facing this contradictory relationship in the ward. Located on the tenth floor of a university hospital with metal bars on its giant windows, the ward felt like a prison. Few of the patients were admitted of their own will. Newly admitted patients were assessed for their readiness to leave the ward, while others only left the premises at 4:00 p.m. each day for a one-hour “outdoor break.” Under the surveillance of an attendant, patients were taken outside near the hospital building’s entrance—which had little green space—at a time when vehicles filled the air with exhaust, dust, and the blare of car horns. Some patients were tied to their beds after repeatedly breaking the ward’s rules.
What for most patients was a space of confinement was for me “the field.” My status as a researcher gave me the time, financial means, and mobility to travel to Turkey and to engage in fieldwork. As an abled-passing, neurotypical academic, I also had an intellectual carte blanche. To the degree that a schizophrenic patient tied to a bed could not express themself or exert their agency (at least in ways I could recognize), I, the researcher, had unimpeded liberty for my able-mindedness to pick apart, analyze, theorize, and decipher.
What to do with this disquieting imbalance?
In their writing about significantly disabled adults, Don Kulick and Jens Rydström problematize crip and other cultural studies-driven theories of disability scholarship for their “implacable drift away from the least articulate people to the most articulate” (2015, 15). Pushing their important critique further, I wonder what remains unresolved when the least articulate subjects are centered? As Dolmage writes, academia “powerfully mandates able-bodiedness and able-mindedness, as well as other forms of social and communicative hyperability” (2017, 7). What do we do with the academic’s inescapable rhetorical able-mindedness, whose established superiority is only further supported in the company of those considered to “lack rhetoricity,” or are “rhetorically disabled” (Price 2011, 26)? Some scholars have tried to defy the able-minded mandate by writing “mad Black book[s]” that refuse linear progression (Pickens 2019, 22), enacting mad forms (Eales 2016), and producing depression memoirs (Cvetkovich 2016). But even then, one can do so only because one is articulate enough to enact such forms of defiance.
To question the hegemony of intellectual ableism, we must question the very tools we use as ethnographers and scholars. As an ethnographer, I am left wondering: Is my desire for access to knowing simply thwarted in this situation? I also wonder: How might we hold space open for what remains inaccessible, insensible, and unknowable to us academics as we go about our everyday business of making sense of things? What kind of a disability studies becomes possible in the absence of intellectual access?
Cvetkovich, Ann. 2012. Depression: A Public Feeling. Durham, N.C.: Duke University Press.
Dolmage, Jay. 2017. Academic Ableism: Disability and Higher Education. Ann Arbor: University of Michigan Press.
Eales, Lindsay. 2016. “Loose Leaf.” Canadian Journal of Disability Studies 5, no. 3 (October 31): 58–76.
Kulick, Don, and Jens Rydström. 2015. Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement. Durham, N.C.: Duke University Press.
Pickens, Therí Alyce. 2019. Black Madness :: Mad Blackness. Durham, N.C.: Duke University Press.
Price, Margaret. 2011. Mad at School: Rhetorics of Mental Disability and Academic Life. Ann Arbor: University of Michigan Press.