Revelatory Narratives of Health and Identity
Oxford University Press, April 2020 [In Press]
Met•ag•no•sis, n. [/ˌmɛtəˈnəʊsɪs/]. Etymology: from μετα- across, changed, different, after + γιγνώσκειν to learn to know, perceive.
1. The revelation of a longstanding undetected condition effecting a change in the terms of knowledge.
a. Medicine. Diagnosis of a previously unobserved pathology, such as becoming aware that one is colorblind. May also occur when the diagnostic classification has shifted, as with the emergent and changeable category of autism spectrum disorders.
b. Identity etc. Revelation of knowledge bearing upon selfhood, such as genetic testing indicating genealogy differing from one’s prior awareness.
Bridging memoir with key concepts in narratology, philosophy and history of medicine, and disability studies, this book identifies and names the phenomenon of metagnosis: the experience of learning in adulthood of a longstanding condition. It can occur when the condition has remained undetected (e.g. colorblindness) and/or when the diagnostic categories themselves have shifted (e.g. ADHD). More broadly, it can occur with unexpected revelations bearing upon selfhood, such as surprising genetic test results. Though this phenomenon has received relatively scant attention, learning of an unknown condition is often a significant and bewildering revelation, one that subverts narrative expectations and customary categories. How do we understand these revelations? In addressing this topic Spencer approaches narrative medicine as a robust research methodology comprising interdisciplinarity, narrative attentiveness, and the creation of writerly texts.
Beginning with Spencer's own experience, the book explores the issues raised by metagnosis, from communicability to narrative intelligibility to different ways of seeing. Next, it traces the distinctive metagnostic narrative arc through the stages of recognition, subversion, and renegotiation, discussing this trajectory in light of a range of metagnostic experiences—from Blade Runner to real-world mid-life diagnoses. Finally, it 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.
“In this important and compelling volume, Danielle Spencer charts complex questions of self and identity, of normality and exceptionalism, exploring with elegance and skill the links between theory and personal experience. Her work is brave, lucid, and insightful.”
— Andrew Solomon, winner of the National Book Award; author of National Book Critics Circle Award-winning Far from the Tree: Parents, Children and the Search for Identity
“Unlike any other book I’ve read, Metagnosis is hard to describe but easy to praise. Radiant with originality, deeply researched, ever absorbing, this thrillingly ambitious hybrid of medical, cultural, and personal history is also a work of passionate imagination.”
— Sigrid Nunez, author of The Friend, winner of the 2018 National Book Award
“Metagnosis is a brilliant, nuanced, and exciting exploration of the multiple ways people come to understand a medical 'condition.' Moving deftly from one discipline to another as she examines their various epistemologies, Spencer pries open her own story and the stories of others. She interrogates the grand cultural narratives and reductionist models that have shaped medicine and exposes their limits, their meanings, and their politics. This is a book that blasts apart conventional categories and pushes its reader to think again. I loved it.”
— Siri Hustvedt, author of The Blazing World, long-listed for the Man Booker Prize and winner of The Los Angeles Book Prize for fiction
“Effortlessly moving from theory to practice, from lived experience to philosophy, this book is both an astute analysis of the history of medicine and a stunning prediction of its future. In Spencer’s wonderfully insightful and highly analytical prose, diagnosis is not the end of a search for knowledge but only its beginning. Metagnosis is an invaluable resource for medical practitioners and patients alike. A stunning book and a rare achievement.”
— Mita Banerjee, author of Medical Humanities in American Studies: Life Writing, Narrative Medicine, and the Power of Autobiography
“Metagnosis is a landmark study and imaginative contribution to work at the interface of biomedicine, humanities, cultural studies, and personal narrative. Making compelling and insightful links, the book represents an impressive maturation of the fields of narrative medicine and health humanities. Spencer’s lyrical prose is a pleasure to read and deeply empowering for all of us who are, or soon will be, navigating the worlds of medical diagnosis and personal life choices.”
— Bradley Lewis, author of Narrative Psychiatry: How Stories Can Shape Clinical Encounters