Rayna Rapp, a medical anthropologist at New YorkUniversity, is the author of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (Routledge, 1999). The book is particularly concerned with how women of diverse racial/ethnic, class, religious, and national backgrounds interpret medical information about prenatal testing, what they understand disabilities to be, and which ones might be worth an abortion. The mutual and changing co-construction of biomedicine and family life lie at the heart of this fieldwork-based project. Her more recent work has moved in two related directions: with a research team, she has examined how new genetic knowledge is made when a gene is found, querying the contributions of bench scientists, clinician/physicians, and patients and their families, all concerned with three conditions for which genes were found in the 1990s: achondroplasia (the most common form of dwarfing); Marfan syndrome; and EB (a family of often-lethal blistering skin diseases).Additionally, along with her colleague, Faye Ginsburg, she is beginning fieldwork and ethnographic analysis of the cultural meaning of the "epidemic" in learning disabilities in the USA. Here, too, sociocultural diversity in diagnosis, services, and educational outcomes is a central focus; a concern with media as a site of social activism and cultural familiarity is at the heart of this project, as well. Thus: science, media, kinship, and education become categories of cultural production, social experience, and anthropological scrutiny in this ethnographic endeavor.

Two relevant articles:

  • 2001. “Enabling Disability: Rewriting Kinship, Reimagining Citizenship”. Public Culture 13 (3) 533-556 (with Faye Ginsburg)
  • forthcoming, “Enlarging Reproduction, Screening Disability” in Marcia Inhorn, ed. Disrupted Reproduction. BergenHahn. (with Faye Ginsburg)

Potential Essay Contribution:

ON THE VISIBILITY AND INVISIBILITY OF LEARNING DISABILITIES: WHAT MAKES THEM PUBLIC, WHY MAKE THEM THE SUBJECT OF ANTHROPOLOGICAL INQUIRY? Fifty years ago, the social terrain of education, occupation, and family forms excluded “public intimacy” with disabled members in the USA. Now, children and young adults with disabilities are far more publicly visible, and “special education” has become an expansive terrain of public debate, consciousness, and innovation. “Learning disabilities” is the fastest growing (and arguably, the most controversial) diagnostic category within special education. This rapid social change engages subjects as intimate as family responses to diagnoses; as philosophical as the diversity of thinking styles which lie behind “All Kinds of Minds” (title of a best-selling book on the subject); as sociological and biomedical as the existence of NICUs that save the low birth-weight babies of the poor and the privileged alike; as culturally mainstreamed as the Hallmark Hall of Fame and Disney Channel TV movies featuring heroes with disabling conditions. The rise in “Learning Disabilities” is centered in the realm of US education. But it also builds upon contributions from diverse social domains --civil rights struggles and legislation; the growth of the biomedical and neurosciences; the rise of school psychology; media activism; kinship changes in all their racial-ethnic, class and religious diversity in the US context-- all play a part in growing public awareness of special education and the role of children and young adults with “special needs”. Based on incipient fieldwork with scientists, educational and media innovators, legal and parental activists, this paper examines claims of universalism (notably: in the biomedical and cognitive sciences and in pedagogy) in relation to the US cultural context within which this highly mediated and stratified transformation is taking place. It also queries the role of ethnographic analysis in making learning disabilities publicly visible, reflecting on the methodological traditions and limitations we bring to our chosen projects.