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The Politics of Metabolism analyses the racial ideas that underpin the metabolic syndrome as a new biomedical construction that aims to transform how contemporary medicine understands and treats metabolic health problems. It explains how metabolism serves as a site for the kind of society that simultaneously manufactures health problems and their remedies, deploys race as a way of concealing inequality, and constructs powerful ideas like metabolic syndrome to sever the relationship between body and society.

Made to Hear reveals the structure and culture of the systems we have built to make deaf children hear. Based on an ethnographic investigation of families who adopt the cochlear implant (CI) for their deaf child, this book describes the experiences of mothers as they navigate the healthcare system, the professionals that work with them, and the influence of neuroscience on the process. The book focuses not on the Deaf community’s argument against adopting CI implants, but on the multiyear endeavor that parents undertake in its implantation. Every year, thousands of families obtain a CI for their deaf child and begin the process of habilitation. Thus, rather than taking a side in the debate, the book uses empirical evidence to evaluate the arguments made by both sides. What unfolds is a description of a broader social context in which science, medicine and technology are trusted to vanquish disability and how mothers are expected to use those tools. Since the CI has become widely available, ‘good mothers’ get one for their deaf child and commit to years of intensive therapeutic labor. What quickly emerges is the power of neuroscientific explanation and the ubiquity of discourse that suggests mothers are engaged in a battle for neural real estate. Made to Hear reveals that implantation has the central goal of controlling the development of the deaf child’s brain through building synapses for spoken language and inhibiting those for sign language, placing the politics of the neuroscience front and center.

Group homes emerged in the United States in the 1970s as a solution to the failure of the large institutions that, for more than a century, segregated and abused people with intellectual and developmental disabilities. Yet community services have not, for the most part, delivered on the promises of rights, self-determination, and integration made more than thirty years ago, and critics predominantly portray group homes simply as settings of social control. This book presents an ethnography of a New York City group home based on more than a year of field research. The text shows how the group home needs the knowledgeable and voluntary participation of residents and counselors alike. The group home is an actual workplace for counselors, but for residents group home work involves working on themselves to become more autonomous. The book reveals that rather than being seen as the antithesis of freedom, the group home must be understood as representing the fundamental dilemmas between authority and the individual in contemporary liberal societies. No longer inmates but citizens, these people who are presumed—rightly or wrongly—to lack the capacity for freedom to actually govern themselves. The text demonstrates that the group home depends on the very capacities for independence and individuality it cultivates in the residents. At the same time, it addresses the complex relationship between services and social control in the history of intellectual and developmental disabilities, interrogating broader social service policies and the role of clinical practice in the community.

Multiple Autisms investigates the emergence of autism as a genetic disorder and why the search for autism genes became a research priority for private and public funding agencies in the U.S. since the late 20^th century. This research is based on nine years of ethnographic observations, analysis of scientific and related literatures, and over seventy interviews with autism scientists, parents of a child with autism, and people on the autism spectrum. This book maps out the social history of parental activism in autism genetics, the scientific optimism and subsequent failure of finding a gene for autism, and the shift to viewing autism as multiple entities resulting from hundreds or thousands of genes interacting at the molecular level. The analysis also takes into account the social impacts of translating autism through a genomic lens from the perspective of people living with autism and their families. This book shows how despite the billion-dollar pursuit of finding a gene for autism, the understanding of this condition remains elusive and the utility of genetic information has limited value in the immediate lives of people living with autism.

Testing Fate looks at the racialized history of Tay-Sachs in the US and UK in its construction as a Jewish disease from the late-nineteenth century through to the present era of geneticization, where people are increasingly expected to make the “right” kinds of medical-genetic choices, including the choice to be screened for genetic disease. Taking Tay-Sachs as its exemplar and with a view to exploring what these developments have come to mean for human agency, the book demonstrates that authentic, free choice in genetic-decision-making on one hand, and responsible biocitizenship in a context of exclusion on the other, are a contradiction of terms.