American Ethnological Society annual conference panel discussion
At the most recent American Ethnological Society annual conference, titled "Resemblance", graduate students Chelsey Carter of the Department of Anthropology at Washington University in St. Louis and Bryan M. Dougan of the Department of Anthropology at the University of North Carolina at Chapel Hill organized and developed the panel, "Legitimizing a Less Exceptional Life in Global Public." Panel participants included Didier Fassin (Institute for Advanced Study, Princeton), Savannah Martin (Washington University in St. Louis), Abigail Dumes (University of Michigan), Chelsey Carter (Washington University in. St. Louis), Zoë Wool (Rice University), and Bryan M Dougan (University of North Carolina at Chapel Hill). The panel sought to consider questions of legitimacy and health priorities at the intersections of anthropology, global health, and public health.
The American Ethnological Society is a subset of the American Anthropology Association focused on promoting rich ethnography and relevant, cutting-edge theory in cultural anthropology. This year's annual conference took place in Philadelphia, PA from March 22-24.
Savannah Martin, Says Who? Challenging Authorities on (Bio)Legitimacy as an Indigenous Biological Anthropologist
As anthropologists, we are regularly burdened with the task of demonstrating the legitimacy not only of our research questions, but also of our research methodologies and study populations to various groups, whether they be dissertation committees, academic colleagues, research grant institutions, or scholarly journals. The recognition of research questions or study populations as legitimate subjects of academic interest therefore determines the allocation of tangible resources only to that research which is deemed worthy and of intellectual value. But why is research on certain health issues in specific populations deemed valid or valuable? Who is it that gets a say on what is worthy or “legitimate”?
The determination of “legitimacy” necessitates the existence of an authority with the power to evaluate and recognize such status, but inequities among authorities themselves create inequities in recognition of legitimacy. This results in systemic inequities downstream, including health disparities, biases in public health research, and inequities among even researchers themselves.
Here, I examine the nature of current and past authorities on legitimacy, how they themselves have historically affected and continue to affect which public health questions get asked, how those questions are framed, and how we go about answering them. I present my experiences as an Indigenous Biological Anthropologist conducting research on chronic illnesses in Native American communities as an example of the ways in which the need to assert legitimacy produces a cycle of inequality in the lives of both research participants and researchers themselves, and I suggest an intervention to break that cycle.
Chelsey Carter, Do “Black Lives Matter” in ALS Research? Exploring blackness, biolegitimacy, and evidenced based research after the ALS Ice Bucket Challenge
ALS (amyotrophic lateral sclerosis
) or “Lou Gehrig’s Disease” presents a unique set of biomedical and social challenges given that the condition has no known etiology, treatment, or cure. In my research, clinicians, physician-scientists and the public have suggested that ALS “isn’t a black person’s disease” without biomedical evidence to support their claim. In the United States, ALS affects approximately 30,000 people. According to the ALS Association’s CARE Database, 93% of those living with ALS are Caucasian. Though not specified, the remaining 7% must include: African-Americans, Latino-Americans, Asian-Americans, Native Americans, and others. Nevertheless, epidemiologists have found that 74.8% of ALS patients are white, 9.3% are African-American/black, 3.6% are Asian, and 12.0% are of an unknown race (Rechtman et al. 2015). Based on years of fieldwork, I argue that ALS is not a “white disease” but that the privileging of white bodies in biomedical spaces, non-profit organizations, and social movements like the 2015 ALS Ice Bucket Challenge have delegitimized the possibility and reality that people of color are susceptible and live with ALS. Global public health research has demonstrated relentlessly that black people worldwide have the highest mortality and morbidity rates. Thus, “white diseases” should not only serve as thought experiments for scholars, but also evoke researchers to advocate for black ALS patients in their investigations. This paper explores the tensions between evidence based medicine, epidemiology, lived experience, and medical expertise to offer a U.S. centered analysis of a “racialized biolegitimacy.”