Review of Metagnosis: Revelatory Narratives of Health and Identity

Danielle Spencer's book, "Metagnosis: Revelatory Narratives of Health and Identity," does many things. It is a work of autotheory, putting Spencer's own embodied narrative in constant conversation with the testimony of others along with a remarkably diverse set of critical and theoretical approaches. In the book, Spencer coins a new term, "metagnosis", which occurs when one is newly diagnosed in adulthood with a lifelong condition. The book explores Spencer's own metagnostic experience involving her eyesight along with chronicling the experiences of others to highlight the ways in which newfound knowledge of a diagnosis can in itself transform us.

Born with strabismus—"misaligned eyes," Spencer is practiced at negotiating the meaning of having a non-normative visual experience and presentation. For the most part, growing up with the condition and frequently subjected to medical attention because of it, Spencer remained largely unconcerned about whether or not she saw differently. But, as the book chronicles, in adulthood, after enduring subpar medical treatment and a series of frustrating surgeries, Spencer is additionally diagnosed with a different visual field condition, homonymous hemianopia, that was likely sustained in infancy, but which up until the diagnosis neither she nor her various doctors had detected.

Spencer describes how she discovers in her orthoptist's office that she can see only half of the visual world of each eye. This discovery leads to a deep ambivalence on Spencer's part—which includes feelings of physical vulnerability, shame that the condition had gone unnoticed for so long, as well as relief for not having to suffer through the stigma and exclusion that may have come with the additional medical diagnosis in childhood. It also leads to a theoretical examination of the limited narrative and theoretical resources that avail us in trying to make sense of such revelatory experiences and the frustrating inexplicability that such transformative experiences can have for others. This intimate narrative approach democratizes theory. As Spencer says near the end of the book, [End Page E-1] "[k]nowledge is not simply illuminated, but is itself profoundly informed by our way of looking." [306] Metagnosis invites us to inhabit Spencer's own way of looking as she engages in critical theoretical analysis of the epistemic and practical stakes related to medical diagnosis and other identity altering revelatory discoveries.

The book is also a work of profound interdisciplinary engagement, bridging conversations happening across siloed academic and cultural spaces. The book draws widely and creatively from biomedicine, medical humanities, philosophy, disability studies, cultural studies, literature, film, oral history, and personal narrative. Ultimately, Spencer argues that metagnosis, the experience, "is largely about navigating different forms of knowledge." [20] The book critically interrogates the insights growing out of multiple disciplines with respect and attention; each of these disciplines is treated as a possible source of knowledge, albeit fallible and incomplete. It will be an important resource for readers from multiple perspectives.

Finally, the book is responding to a kind of epistemic injustice, that is, to a systemic and distinctive wrong done to people in their capacity as knowers and inquirers.¹ Specifically, the book habituates us as readers to attend to and work towards mitigating the hermeneutical injustice we (and others) may face as biomedical subjects—that is, as people to be diagnosed. Hermeneutical injustice, a term popularized by Miranda Fricker and critically developed by theorists like José Medina, Luvell Anderson, and Kristie Dotson, is the phenomenon where a person is unfairly disadvantaged in their capacities to make sense of their own experience.² Hermeneutical injustice happens when certain stories remain untold, not merely because people are systemically excluded from and discredited within the collective discursive community, but also because -as a result of this exclusion and discredit - people lack the shared language to actually tell their stories in a way that makes sense to them.

At its core, the book's project is to identify and provide a new shared language. The book offers us the narrative resources needed to make sense of a distinctive kind of diagnostic experience that has heretofore remained conceptually obscure and personally isolating. In naming the experience of metagnosis, Spencer writes...