Faye Ginsburg and Rayna Rapp participated in “Marginality and Exclusivity in ART Practices,” a panel discussion at The Scholar & Feminist Conference 2009, “The Politics of Reproduction: New Technologies of Life,” held on February 28 at Barnard College in New York City.
Listen to a podcast of “Marginality and Exclusivity in ART Practices.”
As veterans in the study of the politics of reproduction, we would like to propose that the topic of this special issue, Critical Conceptions: Technology, Justice, and the Global Reproduction Market, be expanded temporally to account for how such practices reverberate through the life cycle, beyond the immediate concerns usually associated with the word reproduction. In our current work, we examine the life course consequences for families, extended kin networks, and broader encompassing communities when reproduction “goes awry.” In particular, what happens when fragile infants are born and sustained through the interventions of neonatal medical technologies? Many of these children now survive who might not have in the past, especially those born at low birth weight after the use of assistive reproductive technologies (ARTs). Of those, approximately 25% emerge with lifelong disabilities, which may range from global impairments to subtle cognitive differences that don’t show up until children enter school.
Our research explores the lifelong consequences of this situation: the steadily increasing use of neonatal technologies, most notably neo-natal intensive care units (NICUS), but also less heroic medical interventions such as infant and pediatric versions of portable oxygen, pharmaceuticals, and alternative feeding systems. These enable a much larger range of medically challenged infants to survive. We argue that such “disruptions of reproduction” have unanticipated socio-cultural effects in the daily lives of those engaged in using them as one moves through the life cycle. We are engaging this very broad theme through the specifics of our current field research, looking at cultural innovations in the world of learning disabilities in New York City. Our work suggests that this remarkable “epidemic in learning disabilities” (as some call it), cannot be understood apart from the politics of reproduction that characterizes the present moment in the developed world. The statistics suggest that the extraordinary rise in the LD population—currently about 15% of all U.S. students, doubling every decade since the 1970s—is in large measure due to this expanded medical horizon. Our focus on this under-recognized dimension of expanded health supports in the “niche of reproduction” raises important questions regarding the relationship between medical technology and social justice.
With more and more premature and medically compromised infants surviving, the consequences of technological interventions are felt most intimately and significantly in the lives of families, often far beyond the temporal limits of neonatal wards, at least in western countries where these technologies have become routinized. Now, as American families are no longer encouraged to institutionalize their atypical babies, as was the norm until the 1970s, it is not simply reproduction, birth, and early infancy that are disrupted. As babies with disabilities grow, many assumptions about kinship relations, domestic cycles, and community membership are challenged as well. The arrival of disabled infants into families, in most cases, rearranges presumed narratives of “normal” family life, as parents, siblings, extended family, and a broader community learn to reframe expectations of everything from developmental milestones, to introducing sign language and ramps in places of worship, to discovering what constitutes a “least restrictive” educational environment. Learning the ropes of living with disability is often fraught with resistance and prejudice; struggles inside and between families, communities, and institutions frequently entail expensive interventions in situations of scarce resources as is dramatically apparent in the battles fought by parents of children with autism to get state funding for costly education.
Over the last three decades, people from diverse cultural standpoints have been struggling to craft a counter-narrative and political project inclusive of people—and especially children—with disabilities who had been marginalized in segregated social spaces. Their activism has been crucial to legislative, juridical, and policy transformations that laid the groundwork for the recognition and inclusion of students with LD. These include the following:
- Deinstitutionalization brought several generations of children and young adults into their families and communities, requiring a range of supports for their care, including the accommodations necessary for them to have a “free and appropriate public education.”
- Access to education was enabled by disability rights legislation beginning with the Individuals with Disabilities Education Act in 1975 (and periodic reauthorizations), followed by the passage of the Americans with Disabilities Act in 1990. The systematic conflation of the segregation of children by race and special education was challenged through further litigation.
- The rise of special education including educational psychological testing, and its expansion beginning in the 1970s intersected a longstanding debate about “Why Johnnie Can’t Read” and energized by Cold War concerns about American education.
- The growing medicalization of atypical children emerges with the rise of neuroscience and child psychiatry; these fields catalyze the experimental and routinized use of pharmaceuticals as the “solution” to the “problem” of cognitive and emotional difference.
- Positive, complex, and more realistic media representations of people with disabilities—which had been almost completely absent from the American public sphere—began to emerge in the late 1970s in film and television, with a notable paradigm shift in 1989 with the four-year run of the ABC television series Life Goes On, the first to have a major character with Down Syndrome. This representational landscape expands dramatically with the proliferation of social and user generated media in the 21st century.
These large-scale transformations in the American public sphere are necessary but not sufficient explanations for the rapid expansion of the diagnosed population as well as popular awareness of those with “special needs.” As anthropologists we argue that the cultural changes creating “an LD world” are far more complex. Innovation occurs not only in courts and classrooms but also in other arenas, from media to medicine, most notably in the intimacies of domestic life, usually organized through kinship relations.
