Rayna Rapp, a medical anthropologist at New York University, 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.