“One of the focuses [of Narrative Medicine] is to try to elevate the voices of people who are traditionally disempowered in these spaces.”
On episode 172 of The Quarantine Tapes, Paul Holdengräber is joined by Danielle Spencer. Danielle’s most recent book is Metagnosis: Revelatory Narratives of Health and Identity. Danielle and Paul talk about how her book examines the phenomenon of learning as an adult about a longstanding medical condition.
Danielle tells Paul about the inspiration that led her to write this book and explains how the book fits into her field of narrative medicine. They discuss the relationship between medicine and storytelling and how examining that relationship can help to address some of the ongoing issues with the healthcare system.
Danielle Spencer is a scholar and writer, author of Metagnosis: Revelatory Narratives of Health and Identity, just released by Oxford University Press. Metagnosis names and explores the experience of learning in adulthood of a longstanding undetected condition, such as mid-life ADHD diagnoses.
Sparked by her experience working with David Byrne (who self-diagnosed with Asperger Syndrome; Spencer was Byrne’s Art Director for a decade) and then animated by her own metagnostic experience, the book explores the ways metagnosis subverts customary terms and categories such as disease, disability, etc., and often prompts its own distinctive narrative arc. Drawing upon a wide range of sources—from Aristotle to Blade Runner—the book also situates metagnosis in relation to genetic revelations and the broader discourses concerning identity. Spencer proposes that better understanding metagnosis will not simply aid those directly affected, but will serve as a bellwether for how we will all navigate advancing biomedical and genomic knowledge, and how we may fruitfully interrogate the very notion of identity.
Spencer is the Academic Director of the Columbia University Master of Science in Narrative Medicine Program. Narrative Medicine is a method of fortifying clinical practice with attentiveness to narrative as well as an evolving transdisciplinary field which investigates illness, health, healthcare, and social justice. Her scholarly and creative work appears in diverse outlets, from The Lancet to Ploughshares, and she is a co-author of Perkins-Prize-winning The Principles and Practice of Narrative Medicine (OUP, 2017). Formerly artist/musician David Byrne’s Art Director, Spencer holds a B.A. from Yale University, an M.S. in Narrative Medicine from Columbia University, and a Ph.D. from Johannes Gutenberg University Mainz. She is a 2019 MacDowell Fellow and 2021 Yaddo Fellow. Spencer lives in New York city.