Unraveling: Remaking Personhood in a Neurodiverse Age comes out in early 2020 from the University of Minnesota Press. Here’s some text from the book proposal:
Unraveling has three aims, with potentially overlapping constituencies. First, it attempts to articulate a materialist theory of subjectivity. It does this in tandem with its second aim, which is to develop a language of materialist subjectivity derived from neuroscience, and, especially, family and individual experiences with neurological disabilities. The development of this language is in pursuit of its third goal, that of an anti-normative bioethics that focuses less on value and meaning – captured in things like the discourse of ‘quality of life’ – and instead pursues ideas of connection, facilitation, and animation. These terms – and others – are drawn from the primary sources the text engages with, which include family and individual memoirs of neurological disabilities and monographs written by neuroscientists over the course of the 20th and early 21st centuries. My readings of these texts are informed by my ethnographic research with neuroscientists, psychiatrists, and disability support groups, which appears occasionally in the text; primarily the book focuses on the textual analysis of these memoirs and monographs in an attempt to draw on a publicly available collection of evidence that can be accessed by interested readers.
The memoirs and monographs are drawn from a wide variety of largely American families and scientists over the 20th and early 21st centuries. The scientific monographs include work from contemporary scientists like Antonio Damasio, to Sigmund Freud and Harry Harlow, to Felix Guattari and Jose Delgado, all of whom, in some fashion, offer ways of thinking about the relationship between the brain, communication, and disability. Their ideas also echo concerns in American neuroscience, and can be deployed to develop contributions to a materialist theory of subjectivity. The family memoirs that I draw from include those of families with members diagnosed as autistic, individuals who experience hearing loss, and families who have a member with significant brain injury, including stoke and coma; they too offer ways into conceptualizing materialist modes of subjectivity through their experiences with communication, caregiving, and the demands of everyday life. In each of the memoirs, difficulties in communication on the part of family members is treated as an indication that there is something wrong with the brain. These families and individuals are theory producers and I use their experiences to develop the core ideas throughout the text. Taken together, these sources point to a shadow vocabulary that can help to conceptualize neurologically-derived personhood differently, and to articulate a set of bioethical concerns for the facilitation of non-normative persons.
The memoirs I focus on include: CeCe Bell’s El Deafo, Henry Kisor’s What’s that Pig Outdoors?, Paul & Judy Karasik’s The Ride Together, Ron Suskind’s Life, Animated, Josh Greenfeld’s A Child Called Noah, Peyton & Dianne Goddard’s I am Intelligent, Michael Schiavo & Michael Hirsch’s Terri: The Truth, Paul West’s The Shadow Factory, and Diane Ackerman’s One Hundred Names for Love. These were selected from over 60 memoirs written by Americans in the 20th and early 21st centuries, all of which focused on family members diagnosed with a “neurological disorder.” Their assemblage demonstrates how the category of the “neurological” has changed over the 20th century, and offers an alternative history of neuroscience and psychiatry.