Rayna Rapp

Conceiving the new world order : the global politics of reproduction

This groundbreaking volume provides a dramatic investigation of the dynamics of reproduction. In an unusually broad spectrum of essays, a distinguished group of international feminist scholars and activists explores the complexity of contemporary sexual politics around the globe. Using reproduction as an entry point in the study of social life and placing it at the center of social theory, the authors examine how cultures are produced, contested, and transformed as people imagine their collective future in the creation of the next generation. The studies encompass a wide variety of subjects, from the impact of AIDS on reproduction in the United States to the aftereffects of Chernobyl on the Sami people in Norway and the impact of totalitarian abortion and birth control policies in Romania and China. The contributors use historical and comparative perspectives to illuminate the multiple and intersecting forms of power and resistance through which reproduction is given cultural weight and social form. They discuss the ways that seemingly distant influences shape and constrain local reproductive experiences such as the international flows of adoptive babies and childcare workers and the Victorian and imperial legacy of eugenics and family planning.

The Use of Race Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities: A Transdisciplinary Perspective.

The use of racial variables in genetic studies has become a matter of intense public debate, with implications for research design and translation into practice. Using research on smoking as a springboard, the authors examine the history of racial categories, current research practices, and arguments for and against using race variables in genetic analyses. The authors argue that the sociopolitical constructs appropriate for monitoring health disparities are not appropriate for use in genetic studies investigating the etiology of complex diseases. More powerful methods for addressing population structure exist, and race variables are unacceptable as gross proxies for numerous social/environmental factors that disproportionately affect minority populations. The authors conclude with recommendations for genetic researchers and policymakers, aimed at facilitating better science and producing new knowledge useful for reducing health disparities.

Enabling Disability: Rewriting Kinship, Reimagining Citizenship

In trying to portray my son in the literary model known as a novel, I have passed through . . . stages. In the case of a person like him with a mental disability, it isn’t the individual himself but rather his family that has to pass from the “shock phase” to the “acceptance phase.” In a sense, my work on this theme has mirrored that process. I have had to learn through concrete experience to answer such questions as how a handicapped person and his family can survive the shock, denial, and confusion phases and learn to live with each of those particular kinds of pain. I then had to find out how we could move beyond this to a more positive adjustment, before finally reaching our own “acceptance phase”— in effect coming to accept ourselves as handicapped, as the family of a handicapped person. And it was only then that I felt the development of my work itself was at last complete. (Oe 1995: 46, emphasis added)

Refusing Prenatal Diagnosis: The Meanings of Bioscience in a Multicultural World

This article explores the reasons women of diverse class, racial ethnic, national, and religious backgrounds give for their decisions not to accept an amniocentesis or, having accepted one, not to pursue an abortion after diagnosis of serious fetal disability. The narratives of refusers reveal conflicts and tensions between the universalizing rationality of biomedical interventions into pregnancy and the wider heterogeneous social frame work to which women respond in their decision-making processes.

Sex and Society: A Research Note from Social History and Anthropology

“The personal is political” was a central insight of the wave of feminism which gathered momentum in the 1960 s. Within that phrase is condensed the understanding that the seemingly most intimate details of private existence are actually structured by larger social relations. Attention to the personal politics of intimate life soon focused on sexuality, and many canons of sexual meaning were challenged. The discovery of erotic art and symbols as malecentered, the redefinition of lesbian sexuality as positive and life-affirming, and the dismantling of the two-orgasm theory as a transparently male perception of the female body were among the products of this critique.

Chasing Science: Children’s Brains, Scientific Inquiries, and Family Labors

Over the last three decades, an escalating portion of U.S. school children has been classified for special education; those with diagnoses entitled to services now number 15 percent of all public school pupils. At the same time, American scientists have focused increasingly on juvenile brains, studying what one psychiatric epidemiologist labeled ‘‘social incapacities.’’ This article reports on the laboratory labors of two scientific groups: neuroscientists who scan children’s brains in search of resting state differences according to diagnosis and psychiatric epidemiologists who look to epigenetics to distinguish differential diagnostic populations. The article focuses on the medicalization of childhood differences and the harmonies and discordances between what researchers and parents understand to be at the root of children’s learning and social capacities.

Sociocultural differences in the impact of amniocentesis: an anthropological research report.

This research report describes an anthropological study of the social impact and cultural meaning of prenatal diagnosis in New York City. Research parameters, findings and suggestions for designing future prenatal testing services are outlined. The ethnocultural and socioeconomic diversity of those whose lives are touched by prenatal genetic testing is stressed.

A Child Surrounds this Brain: The Future of Neurological Difference According to Scientists, Parents and Diagnosed Young Adults

This chapter interrogates notions of the child and her brain as configured in the laboratory of pediatric neuroscientists, and by parents (overwhelmingly: mothers) of children classified for special education services on the basis of their varied learning capacities and incapacities. Data are drawn from my current New York-based study in a laboratory conducting fMRI research on resting-state differences amongst controls and children variously diagnosed with attention deficit hyper-activity disorder (ADHD), learning disabilities, autism and Tourette syndrome. Parents of children with those same diagnoses struggle with the strengths as well as the school-based weaknesses of their children, and in interviews they picture their childrens brains quite differently than do the scientists. Young adult activists who grew up with the diagnoses of ADHD and learning disabilities appropriate lab-based descriptions of neurological difference to their own purposes, claiming a positive identity for themselves. At stake in the space between these diverse perspectives on childhood difference is the future of human developmental variability as it comes under biomedical research and regulation.

Ethnocultural diversity and genetic counseling training: The challenge for a twenty-first century

The most recent data from the Popula t ion Census Bureau (1990) indicate that the Uni ted States is current ly experiencing its greatest and most diverse ethnic migration since before World War I. As technologic abilities cont inue to increase, more centers are offering genet ic services, especially in urban areas where new immigrants are likely to reside. Additionally, the range of genetic services that are available has also grown. Project ions for the year 2000 postulate that 1 out of every 4 Americans will be a member of an non-Euro Amer ican ethnic group. It is est imated that by the next century more than half of the total Uni ted States population will be of color. This dramatic growth of diversity mandates the training of more genetic counselors who have the knowledge, skills, and awareness to effectively work with and provide services to diverse populations. In this issue of the Journa l , Jon Well and Ilana Mit tman propose a f ramework for teaching genetic counseling graduate students crosscultural issues. While the number of immigrants and ethnic groups in the Uni ted States is rapidly growing, adequate representat ion from these populat ions in the health professions lags behind. Specifically, there is an extreme

The Paradox of Recognition: Success or Stigma for Children with Learning Disabilities

Beginning in the 1970s in the United States, a series of remarkable institutional, legal, scientific and cultural changes helped render visible a category of schoolchildren considered atypical because of their tendency to ‘Learn Outside the Lines’ (Mooney and Cole 2000). Many advocates and specialists — from educational psychologists to business CEOs, from civil rights activists to remedial reading counsellors, from neuroscientists to media moguls — would eventually become involved with the question of ‘Why Johnny Can’t Read’ (Franz 1966 (reprinted 1985, 2000)), weighing in on the reasons behind school failure and policies that might make it more possible for children who did poorly in school to succeed. Many of the children in question, once categorised as ‘minimally brain damaged’ through the 1960s, were increasingly labelled as ‘learning disabled’ (LD), a term that brought with it a series of philosophical, ethical and policy controversies, as they were separated from the categories of ‘mild mental retardation’ and ‘emotionally disturbed’ (Kirk 1963). American middle-class activist parents in particular hoped that this definitional change would reframe certain kinds of learning differences.