Loading...
INF Seminar Series: Was that a Seizure? Diagnosis in Lived Experience and Medical Practice
Online Event
Details
More information available at: https://www.informatics.uci.edu/explore/department-seminars/
Title: Was that a Seizure? Diagnosis in Lived Experience and Medical Practice
Abstract:
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.
However, computing has historically limited the participation of specific populations from accessing and benefiting from opportunities in the field due to differences in privilege, access, and awareness. The resulting lack of diversity in computing affects who can develop technology and how technology is developed to be usable and accessible for all potential users. Certain technologies, such as desktop applications and touchscreen user interfaces, may be inaccessible for people with disabilities, and A.I.-based technologies may be trained on bias data due to a lack of diverse perspectives. Without diversity in computing, there is a risk that the resulting technology may be created without critical perspectives and may unintentionally provide inequitable user experiences for consumers.
This talk discusses current efforts to expand the participation of marginalized groups in computing in terms of access to education and technology. Discussion of groups includes racial and ethnic minorities, women, people with disabilities, and aging adults. Past and existing interventions helped increase students' awareness, agency, and self-efficacy in pursuing a computing career. Designing and developing technology to be inclusive and accessible for everyone is demonstrated with applications of user-centered design (UCD) to consider the perspectives and needs of future users.
Bio:
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.