Doctoral Dissertation Resarch Hedwig: The Cultural Politics of Fetal Alcohol Spectrum Disorders and the Diagnosis of Difference

roblem Statement: Fetal Alcohol Spectrum Disorders (FASD) are reported to be the leading identifiable cause of mental retardation in the United States and Western Europe (Burd and Moffatt 1994). Alaska has the highest rate of FASD in the United States (Egeland Ct al. 1998) and rates for Alaska Native populations are reported to be significantly higher than other racial/ethnic groups in Alaska (Schoellhorn and Podvin 2002). The proposed research will examine ethnographically how a diagnosis of FASD influences patterns and relations of family, kinship and indigenous identity for Alaska Natives and structures access to and utilization of health, educational and vocational resources. The researcher will document the everyday life strategies that Alaska Native adults diagnosed with FASD and their adoptive families utilize to manage the stigma of disability and the everyday life challenges of impairment. Methods and Analysis: To address the proposed research questions, I will employ a mixed methodological approach, including disability and life history narratives, participant observation in the context of parent navigation, FASD camp, grand-families support network at Volunteers of America and a variety of other public and professional settings, and semi-structured interviewing. I will collect disability/life history narratives and interview (N30) Alaska Native adults 18 years of age and older who live in Anchorage and have a diagnosis of FASD (15 who live with non-Native adoptive parents and 15 who live with adoptive natural grand-families) and an adoptive parent for each (N=3 0), for a total of 60 interviews. An additional 10 interviews will be conducted with key community leaders, including health professionals, parent navigators, tribal health administrators and other community members with insight into FASD and disability in Anchorage. Collected data will be coded in accordance with the sub-topical themes identified for each of the three primary research questions (i.e. impairment-disability, health, education, vocation, family, kinship and identity) and organized for analysis using the “Nvivo 7.0” qualitative data management software. Intellectual Merit: This research will contribute to four primary areas of social science inquiry: medical anthropology, disability studies, reproductive health and indigenous studies. It will be the first to examine ethnographically how a diagnosis of FASD alters patterns and relations of family, kinship and community and influences the experience of disability for Alaska Natives living in Anchorage and their adoptive families. As a critical mode of engagement with both medical anthropology and disability studies, this research will advance scholarship concerning impairment- disability, as a critical axis of socially marked difference, health inequality, and the ways in which interactions of multiple locations of difference and otherness pattern health experiences and outcomes. This research will also contribute to the growing scholarship of anthropologists concerned with reproductive health and the racial, cultural, and gendered politics of accusations about fetal exposure to alcohol with respect to minoritized groups. Broader Impacts: Anthropologists working in a number of different health settings will find that FASD is a critical lens through which impairment-disability and the dynamic interplay between structural constraint and individual agency can be examined. Research findings will be particularly useful to the FASD diagnostic team at South Central Foundation, the parent resource team at Stone Soup Group and the grand-families network at Volunteers Of America, where understanding the broader social and cultural implications of FASD diagnosis could enhance interactions with Alaska Native individuals, families and communities, thereby contributing to improved health, educational and vocational outcomes and creating greater opportunities for meaningful inclusion.