Defense Date: May 6, 2022
Public Presentation Date: May 20, 2022
Submitted to Rutgers University for a Ph.D. in Communication, Information, and Media, This is about the body, the mind, the academy, the clinic, time, and pain is an autoethnographic webtext that is approximately 255,000 words in its entirety. I arrived at this project in late 2014, as I recovered from an emergency appendectomy that compelled me to rethink my desires and needs as a student and scholar. I’d begun the program with an interest in digital subcultures and transgression; I’d just passed my qualifying exams in May, despite internally bleeding for the duration of my reading, writing, and oral defense. Between teaching, resting, and rehabilitation, I tried to process what had happened to me, and the more I processed, the more I realized that my research interests had shifted to something more profoundly personal and lived, a set of experiences so common to me that I’d almost forgotten how uncommon they are to nondisabled white people. Having narratives imposed on me. Having my patient-scholar expertise undermined in the clinic on the grounds that I’m not a physician, that I have a “hypochondriac” diagnosis, that I’m a nonwhite, “well-appearing” woman. Having to suppress my misabled ways of knowing, being, and communicating to conform to the formats demanded by the clinic and the academy. Having to perform my chronic illness into visibility to satisfy biomedicine’s ocularcentric imperative. Having to question the validity of my neuroqueer ways of knowledge- and sense-making. Having to insist that I am able to communicate about my pain, even when I am in pain, over and over, because I am typically disbelieved.
The clinic wouldn’t believe me, and the academy demanded a charade I could no longer keep up. That these two systems were mutually, even cooperatively hellbent on excluding bodyminds like mine never seemed clearer to me, and with my recent brush with death, the stakes never felt higher.
The ruptured appendix that almost killed me made it increasingly difficult for me to put the mask of normalcy back on, whereas writing a cybertext—instead of traditional academic work that harms me to produce—was relatively frictionless. For one, it allowed me to write in ways that mirror how I think and create: in interactive stories whose narratives I can pore over, repetitively, in search of another ending; in gardens of forking paths whose logic is most apparent to me when their original labyrinthine structure remains intact. For another, it facilitated an immersive experience of the interruptions, boredom, frustration, and joyous revelation that accompany chronic pain. And finally, it allowed me to structure the project in a way that culturally aligned with my knowledge about pain. To quote from the manuscript, “The neuroqueer navigational acts of the cybertext and decolonial quality of Indian aesthetic rasa [or indescribable essence] is what drew me to pitch this dissertation as a cybertext.”
Once I decided that this project was autoethnographic, I knew that I wanted readers to “work in the registers of fibromyalgia, fatigue, and fog to construct the story” via “consumption strategies that render the narrative unstable, unpredictable, and emergent,” such as hyperlinks, interruptive multimedia content, and interactive texts and paratextual materials. As my experience of pain is inseparable from my identity as an Eelam Tamil American with intergenerational trauma, I chose to code-mesh, incorporating the Tamil phrases and terms I heard growing up and sometimes think in; to use parables like the ones that inform my knowledge-making; and to structure the project like an ancient Tamil epic.
As I think through and live my experience by traversing and re-traversing it via multiple pathways, I tried to write it with more pathways than I can anticipate. It contains a total of 6 kandams (Tamil for chapters) and 141 padalams (sections), which may be navigated according to the comprehensive reading order preferred by the author; the shorter, more linear reading order that demonstrates theoretical rigor as traditionally conceived; or an order of the reader’s choice. These padalams consist of traditional scholarly writing; lyric essays annotated with marginalia; artwork; and interactive games, clinical notes, timelines, interpretive exercises, and patient intake forms. I tried to write each padalam, or section, as a stand-alone piece, thematically organizing them into kandams as well, so that readers could choose their own way forward, to their frustration or relief.
This is about the body, the mind, the academy, the clinic, time, and pain is a capacious title for a sprawling project. I see these items as inextricably intertwined for the chronically painervated subject. It’s difficult to pinpoint a single argument for such a project, which follows a broad set of choppy queries, such as: “What can a body do? What language does it speak, or what language is used to speak for it? How does the vulnerability and contingency of/in my chronically pained body echo structural flaws in society and mass culture? How do (mostly) accepted alternative practices, like bodywork, acupuncture, and body modification reconstitute the relationships between body and self, pain and personhood, client and hands-on practitioner? And by experimenting with the sensory hierarchy, simulating contingency, and intervening with technology, how might we learn to differently and more expansively express and receive articulations of pain typically unrecognized by both medical technology and the untrained human eye?”
This project theorizes relationships among discourses around the ailing body, biomedical technologies intended to render visible chronic pain, and the compulsory able-bodymindedness of academic culture and its writing conventions. Through analysis of discursive artifacts, such as imaging reports, pharmaceutical rhetoric, self-monitoring technologies, and academic interchange, I show how techniques and institutions converge to bring the scholar-in-pain under the biomedical and academic gaze. From pain questionnaires to requirements within the academy, institutions and standards seek to quantify pain in ways that minimize chronicity, contingency, and idiosyncrasy to craft acceptable, visible experiences of pain and its embodiment; chronically pained subjects must conform to these understandings in order to be believed. In this project, I analyze and examine my analysis of my pain as both a patient and a scholar to de-individuate the singular experience of chronic pain and recover what is desirable and resistive about the ontology of fibromyalgia. I consider how meanings are made around a queer Eelam Tamil fibromyalgic woman scholar’s bodymind in biomedical and academic settings in order to excavate broader cultural relationships among chronic pain, ocularcentrism, Euro-Western and Tamil sensory hierarchies, and decolonial ways of knowing.
Set against the general experience of disempowerment in medical and academic institutions, this project seeks to undermine dominant discourses that frame pain as an unknowable, alienating, and individuating state and chronic pain as involuntarity, or a fate worse than death. Such discourses are perpetuated by the institutionalization of pain management approaches that emphasize ocularity at the expense of the other senses, a standard Euro-Western scientific vocabulary for pain, the conflation of neurotypical disembodied scholarship with authenticity, and radiological, interpretive, and epistemological techniques intended to locate, visualize, and erase fibromyalgia. Consequently, the institution has increasingly, and problematically, narrowed the parameters for embodied self-experiencing and public articulation of intractable, incurable pain.
Attending to the relationships between fibromyalgia and ocularity, particularly in the wake of digitization, I deconstruct individual moments in how the queer Eelam Tamil fibromyalgic woman scholar is perceived and constructed as a failed body, medically and academically, and how she subverts or exploits those constructions. Ultimately, this project aims to emphasize the need to reconfigure fibromyalgic subjects as nonexpendable people, whose disability doesn’t make impossible a dynamic, joyful, and desirable existence, and to replace biomedical logics of cure with the goals of the disability justice movement: care, access, and radical, collective love.
The captioned video below depicts how a reader might interact with this project, overlaid with an audio recording of my public presentation. The muffled sound quality is an artistic choice, intended to slow your comprehension until it mirrors mine. The transcript, which includes video and audio descriptions, includes in the comments several salient (and quotable/citable) excerpts from the pieces shown in the video.
This dissertation is not yet published as a whole, but excerpts have been published in various scholarly and creative publications, including “Notes to self,” “The author is in pain,” “The author draws a blank,” “Pages that touch back,” “The successful text is not always the one that murders me to protect you,” and “(Un)professionalizing chronic pain through academic dress.” Material has also appeared in “‘A way of life that is not entirely unfortunate’: The peripheral cunning of chronic pain” and ” What we see when we digitize pain: The risk of valorizing image-based representations of fibromyalgia over body and bodily experience.”
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