Disability Studies Community Blog
Book and Media
Review by Hannah Bingham Brunne, Oklahoma State University, Email: firstname.lastname@example.org
Keywords: metagnosis, biography/memoir, identity, selfhood, medicine, identity, adult diagnosis
In Metagnosis: Revelatory narratives of health and illness (2021), Danielle Spencer introduces and establishes the concept of “metagnosis:” “the revelation of a long-standing undetected condition effecting a change in the terms of knowledge.” Spencer’s definition goes on to include sub-definitions in terms of both medicine and identity. Along with coining this diagnostic and narrative term, Spencer uses the text to argue not merely for the existence of metagnosis, which she succinctly proves within the first chapter, but also that metagnosis has its own particular experiential and narrative structure, along with making arguments regarding disability, illness, and the mutability of identity.
Spencer gives several relevant examples as she establishes the concept of metagnosis, including late-life ASD diagnoses or self-diagnosis like the cultural and self-diagnosis of David Byrne, Talking Heads frontman, with ASD, or her own later-in-life revelation of having had an infant stroke, which effects her (known) visual impairment in ways she did not know or understand before the “change in knowledge” of the metagnosis. This topic of adult diagnosis that changes identity or the way someone looks back at their life or sees themself makes this an especially relevant topic, with the number of adult ASD and ADHD diagnoses rising daily due to awareness-raising on social media sites like Tik-Tok, Instagram, and Twitter. However, this is at its core a book for disability studies specialists, not laypeople with metagnosic experiences; despite the wide appeal of the concept itself, another volume needs to be written for the non-academic audience in order to spread an understanding of metagnosis to the larger metagnostic audience.
Spencer arranges the book in four parts: Metagnosis, Sight, Seeing Metagnosis, and Looking Forward. In the first section she sets up and establishes her term as well as the shape and scope of the book and its interdisciplinary focus. In part two, she moves on to her own metagnostic memoir, alongside establishing her concept of “blindsight:” being aware of an absence of consciousness. However, it is this section where Spencer uses philosophy to tie together her memoir with metagnosis that is most difficult to follow for the non-specialist or even for those in disability studies who are less familiar with specific philosophic concepts.
Part three begins her investigation of metagnosis, disability, and identity, delving into the “epistemic renegotiation” involved with metagnosis and metagnosic identities. Here she turns from the medical definition to the identitarian definition, comparing metagnostic accounts of ethnic genetic revelations from genomic testing companies as well as adult stories of gender transition. However, as a cis person, Spencer’s use of transgender as a metagnostic example, while apt, feels vaguely transmedicalist in a text centered on health and identity. As a whole part three feels underdeveloped, perhaps because it is less central to her arguments about health.
Finally, in part four, Spencer enumerates extant metagnostic narratives, such as ASD and ADHD memoirs, several of which she examines. She concludes with a discussion on metagnosis and identity, arguing that metagnostic freedom comes from learning that identity can and does change over time, something readers can learn from metagnosis, both as a concept and the text.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.