Informatics Seminar Series
Winter Quarter 2022

Friday, January 28, 2022

“Was that a Seizure? Diagnosis in Lived Experience and Medical Practice”

Megh Marathe
President’s Postdoctoral Fellow of Informatics, UC Irvine & Incoming Assistant Professor of Media, Information, and Bioethics
Michigan State University

This talk examines how doctors and patients distinguish between normal and pathological events through the case of epilepsy. Epilepsy is a chronic illness and disability characterized by recurrent and unpredictable seizures. Seizures are transient events during which people lose control over parts of body-mind function.

I show that the diagnostic boundary between seizure and non-seizure events is fluid, dynamic, and porous in both lived experience and medical practice. Tracing how people obtain an epilepsy diagnosis, I show that people recognize odd events as seizures only in retrospect, through unusual sociobiological and environmental interactions, and with the help of family, friends, and medical practitioners. Turning to medical practice, I show that doctors similarly account for patient-specific, social, and environmental factors that go well beyond the readings of diagnostic technologies when diagnosing seizures in practice.

Further, I show that people with epilepsy and physicians take what I call an expedient approach to classifying seizures. Calling an event a seizure has ramifications well beyond treatment, also affecting people's financial stability, social participation, and life aspirations. Hence, people with epilepsy and physicians seek to postpone or avoid severe consequences, typically by dismissing events that would otherwise be called seizures through informal workarounds that modify the very definition of seizure. By engaging in expedient classification, doctors and patients bend rigid classification schemes to suit the complex realities of people's lives.

This work makes theoretical contributions to scholarship on the politics of classification, lay and professional expertise, and understandings of disability in information science, science and technology studies, and disability studies.

Megh Marathe is President's Postdoctoral Fellow in the Department of Informatics at the University of California Irvine and incoming Assistant Professor of Media, Information, and Bioethics at Michigan State University. Their research seeks to foster dialogue between lived experience and expert knowledge in the domain of healthcare. Their work advances the fields of human-computer interaction, disability studies, science & technology studies; and generates practical implications for inclusive healthcare systems. Marathe's research has been published in CSCW, CHI, TOCHI, ICTD, and Time & Society. They have received fellowships from Microsoft Research, the University of Michigan Institute for the Humanities, and the UC Office of the President for their work on the social implications of medical technology. Marathe received a PhD in Information from the University of Michigan and a master's in Computer Science from the University of Toronto.

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