For this installment of the Top of the Heap series, I spoke with Elizabeth Lewis, who is a doctoral candidate in anthropology at the University of Texas at Austin, as well as a disability writer, blogger, and advocate.
For several months now, I’ve been thinking about the relationship between ethnography, narrative nonfiction, and fiction, and the possibilities for navigating between those genres ethnographically. I am in the process of weaving together several overlapping projects on rare and undiagnosed disabilities in the U.S., and my current writings explore how diagnoses animate everyday life and unsettle historical understandings of disability-as-difference. It sounds clear enough, yet I’ve been plagued by nagging questions of form and voice, as well as function and translatability. As always, I turned to my bookshelf for answers.
My booklist these days centers on three categories: popular writings on disability, ethnographies, and an additional “Other” group consisting mostly of works from disability studies and the history of medicine. I just started Nathaniel Comfort’s The Science of Human Perfection, a fascinating exploration of the history of medical genetics and eugenics in the U.S. My research focuses on undiagnosed disabilities and, for this population, genetic technologies can be a critical tool for obtaining diagnostic information that was unimaginable in the recent past. What do genetic explanations do and mean for disability populations that are so small, sometimes with only one or a handful of cases of a particular syndrome known worldwide? How does this new knowledge potential intersect with the complex history of eugenics and disability?
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.