Phenomenological approaches to pain have flourished in recent years because pain has been cast as a private experience that shatters language and evades representation. And yet, despite the obvious constraints on apprehending another’s internal states, language is what translates pain from the solitary and unknowable to a phenomenon that is richly described in literature, medicine, and everyday life. Drawing on 18 months of ethnographic fieldwork in a multidisciplinary pediatric pain clinic, All in Your Head: Making Sense of Pediatric Pain builds on phenomenological accounts but situates pain within an intersubjective context to emphasize the relational, everyday means through which chronic pain is understood and managed. Through careful attention to the language of pain—including narratives, conversations, models, and metaphors—and detailed analysis of how pain sufferers make meaning through interactions with others, the book reveals that however private pain may be, making sense of it is profoundly social.
Saving Babies? The Consequences of Newborn Genetic Screening (co-authored by Stefan Timmermans), examines the recent expansion and standardization of state-mandated newborn screening programs in the US. The book draws on three years of ethnographic research in a California metabolic-genetics clinic to describe how parents and geneticists together resolve multiple diagnostic, prognostic, and epistemic uncertainties associated with the introduction of new screening technologies. We argue that, contrary to the position of vociferous advocacy groups, newborn screening cannot on its own save lives. Many other factors must be in place for the putative “benefits” of newborn screening to be realized, and these benefits come with a host of unanticipated consequences—such as deeply ambiguous results and inadequate access to treatment—that have received far too little attention from policymakers. Therefore, newborn screening exemplifies the unsettling paradox of investment in high-tech medicine while ignoring the provision of more basic healthcare needs.
Amidst ongoing debate about health care reform, the need for informed analyses of U.S. health policy is greater than ever. The twelve original essays in Understanding Health Inequalities and Justice: New Conversations Across the Disciplines (co-edited with Michele Rivkin-Fish and Rebecca L. Walker) show that common public debates bypass complex ethical, sociocultural, historical, and political questions about how we should address ideals of justice and equality in health care. Integrating perspectives from the humanities, social sciences, medicine, and public health, the contributors illuminate the relationships between justice and health inequalities to complicate and enrich debates often dominated by simplistic narratives. From addressing patient agency in an inequitable health care environment to examining how scholars of social justice and health care amass evidence, this volume combines the skills and sensibilities of diverse scholars to promote a richer understanding of health and justice and the successful paths to their realization.