The New Kinship Imaginary
While our research initially targeted what we are calling the “cultural innovators” who are reshaping schools, diagnostic categories, and media representations to accommodate children with disabilities, we noticed that all of these projects were deeply informed by the “paradigm shift” families experienced as they realized their lives didn’t map easily onto pre-existing models of American domesticity. “Cultural Innovation in Special Education,” the title of our current fieldwork, sprawls in many directions. Despite our best efforts to contain it, such differences are promiscuous violators of the walls erected by medical manuals and school bureaucracies. In addition to the “visual activism” of the films discussed below, our work tracks the sites where the landscape of learning disability is transforming most rapidly. Our multi-sited research includes:
- Fieldwork in neuroscience and epidemiological psychiatric research labs, where scientists search to understand brain differences among children;
- Interviews with heads of schools and programs which are particularly accommodating to children who struggle with conventional educational skills and demands;
- Work with families whose children have Individualized Education Plans (IEPs), the Board of Education-assigned passport to special education services, in order to understand their perspectives on the janus-faced gifts and poisons of having a child labeled and remediated;
- Ethnographic analysis of and participation in the visual and narrative mediation of what we call the disability Media World;
- A rapidly changing mediascape, from activist documentary to reportage and experimental works to social media such as YouTube, to new medical imaging technologies such as fMRI, which is increasingly used in brain research on cognitive differences;1
- And engaged participation in the building of “transition programs” for students who have grown up with the institutionalized benefits and burdens of Federally-mandated Special Education labels, only to find themselves without continued support or a clear pathway towards a fulfilling adult life as they leave high school.
In terms of families, our data set is drawn from a sample of over forty interviews conducted in 2009-10 with mothers who we contacted or who contacted us via several Internet support groups for families involved in special education in the New York area where an announcement of our research project appeared. While all those we interviewed consider themselves to be strong advocates for their children, most are not oriented toward more formal activism with one or two exceptions. While all our interviewees had to have computer access in order to respond to our call for interviews, most were of modest economic background. Additionally, the sample “snowballed” beyond Internet group members as interviewees spontaneously passed on our names to friends they had made in the process of getting services for their children. We were particularly impressed and moved by the desire many women expressed to be interviewed and have their struggles formally acknowledged via our work. Many spoke compellingly about the need for the stories of families such as their own to be heard by a broader public. Although we did not sample initially for diversity, the people who volunteered as research subjects were drawn from all five boroughs and represented multiple racial, ethnic, class, and educational backgrounds. Approximately 30% of our sample is African American; about 15% is Hispanic.
- Faye Ginsburg, Lila Abu-Lughod, Brian Larkin, eds. Media Worlds: Anthropology on New Terrain (Berkeley: University of California Press, 2002). [↩]
