Elizabeth Hoover is an anthropologist and associate professor of environmental science, policy and management at Berkley, who long claimed to be native (receiving grants and research access under this assumption) but has recently admitted otherwise. She has a PhD in anthropology from Brown University with a focus on Environmental and critical Medical Anthropology.
Katsi Cook, Mother’s Milk Project, collecting samples of breast milk: “Katsi has described this work as “barefoot epidemiology,” with Indigenous women developing their own research projects based on community concerns and then collecting their own data.” (90) - 61? – used a private lab to analyze samples because women did not trust the New York State Health Department
“Barefoot epidemiology” is a concept borrowed from China’s “barefoot doctors”—community-level health workers who brought basic care to China’s countryside in the mid-twentieth century. Hipgrave, “Communicable Disease Control.” According to a “workers’ manual” published by the International Labour Organization, barefoot research is often qualitative, and qualitative research is not the standard approach for conducting health studies, which tend to be based on laboratory experiments and clinical findings. See Keith et al., Barefoot Research” (294)
Civic Dislocation: “In many instances Mohawks experienced what Sheila Jasanoff calls “civic dislocation,” which she defines as a mismatch between what governmental institutions were supposed to do for the public, and what they did in reality. In the dislocated state, trust in government vanished and people looked to other institutions . . . for information and advice to restore their security. It was as if the gears of democracy had spun loose, causing citizens, at least temporarily, to disengage from the state” (118)
“Dennis Wiedman describes these negative sociocultural changes and structures of disempowerment as “chronicities of modernity,” which produce everyday behaviors that limit physical activities while promoting high caloric intake and psychosocial stress” (235)
Third space of sovereignty: “This tension that arises when community members challenge political bodies while simultaneously demanding that they address the issues of the community has been theorized by political scientist Kevin Bruyneel, who describes how for centuries Indigenous political actors have demanded rights and resources from the American settler state while also challenging the imposition of colonial rule on their lives. He calls this resistance a “third space of sovereignty” that resides neither inside nor outside the American political system, but exists on the very boundaries of that system.” (259)
“Akwesasne residents’ main criticism of the Mount Sinai study was that at its conclusion, the researchers packed up and left, and community members felt they had not received any useful information.” (76)
“As scholars of tribal health risk evaluation Stuart Harris and Barbara Harper explain, among most tribal people, individual and collective well-being comes from being part of a healthy community with access to heritage resources and ancestral lands, which allow community members to satisfy the personal responsibilities of participating in traditional activities and providing for their families.” (96)
“By placing “race/ethnicity” on a list of diabetes causes without qualifying why it is there, the CDC neglects the underlying root cause—that race/ethnicity is often associated also with class, education, levels of stress, and access to health care and fresh foods.” (231)
“Chaufan argues that to counter the focus on the medicalized aspects of diabetes, which has led to the individualization and depoliticization of the issue, a political ecology framework needs to be applied to the disease, one that is concerned with the social, economic, and political institutions of the human environments where diabetes is emerging.39 Such a framework would highlight how diabetes rates among Mohawk people are influenced more by changes in the natural environment and home environments than by genetic makeup.” (231 - 232)
“Understanding community conceptions of this intertwined “social and biological history” is important because, as Juliet McMullin notes, examining the intersections of health, identity, family, and the environment helps to “denaturalize biomedical definitions of health and moves us toward including knowledge that is based on a shared history of sovereignty, capitalist encounters, resistance, and integrated innovation.”61 The inclusion of this knowledge can lead to the crafting of interventions that community members see as addressing the root causes of their health conditions and promoting better health.” (249)
Hoover’s book is an analysis of the material and psychosocial effects of industrial pollution along the St. Lawrence River, which runs through the Mohawk community of Akwesasne. Hoover focuses on resistance to private and state efforts at land enclosures and economic rearrangements. Hoover shows how legacy of industrialization and pollution (GM and Alocoa, primarily) ruptured Mohawk relationships with the river, and incurred on tribal sovereignty by disturbing the ability to safely farm, garden, raise livestock, gather, and recreate in ways fostered important connections between and amongst people and the land (“ecocultural relationships”). Hoover describes how confusion about risk and exposure is culturally produced and develops the "Three Bodies" analytic framework to show how individual, social and political bodies are entangled in the process of social and biophysical suffering.
Hoover also highlights how in response to pollution, Mohawk projects of resistance emerged - a newspaper, documentary films, and community-based health impacts research. Hoover conducts a comparative history of two research projects tracking the effects on industrial-chemical contamination on Akwesasne people and wildlife: the Mount Sinai School of Medicine’s epidemiological study in the 1980s, which failed to engage Akwesasne people in the production of knowledge or share results meaningfully, and the SUNY-Albany School of Public Health Superfund Basic Research Program study (in the 1990s and 200s), which ultimately began incorporating key theoretical and methodological principles of CBPR.
The authors review literature on the datafication of health, which they identify as the way through which health has been quantified on a number of different scales and registers. They focus primarily on the datafication of health in clinical health care and self-care practices, rather than medical research and public health infrastructures. From this literature, they identify three key themes: datafied power (the ways through which data permeates and exerts power over forms of life), living with data (focused on datafication as an intimate form of surveillance, and a technology of the self), and data-human mediations (which emphasizes the nonhuman elements mediating datafication dynamics and experiences—such as algorithms, data infrastructure and data itself).
In examining literature on datafied power, the authors acknowledge a lack of scholarship on understanding data and datafication in terms agency, rather than simply power and domination. For instance, data is sometimes mobilized in “creative and even pioneering ways (Rapp 2016)” (265).
They describe literature on “living with data” as increasingly focus examining the social, narrative, and affective dimensions of data practices and experiences (e.g. work on the “Quantified Self,” a group seeking self-knowledge through numbers – a form of relationality that might be described as datasociality). Some scholars have argued that data can render “‘feelings and problems more tangible and comparable” (Sharon & Zandbergen 2016, p. 11)” (267). Some have also acknowledged as well a “curious resonance between the vision of empowered, resisting individuals that many ethnographers of self-tracking celebrate, and the rhetoric of consumer empowerment found in discourses of digital health (Schull 2017, Sharon 2017)” (267).
The literature on data-human mediations emphasizes the agency, liveliness and/or performativity of nonhuman elements—essentially, how they structure and shape the possibilities for action. For instance: “as social expectations of normality and health become embedded in tracking devices’ target numbers, presentation of scores, and gamified incentives (Depper & Howe 2017, Whitson 2013), a “numerical ontology” comes to suffuse everyday practices and “the ways in which people relate to their own bodies” (Oxlund 2012, p. 53; see also Jethani 2015, p. 40)” (269). Perspectives and action can be enabled or disabled by wide variety of factors: the design and performativity of data technology software (user interface, operational and analytical algorithms), hardware (devices, sensors), data itself (as illustrated in different ways), and data infrastructures (labs, data centers, serve and cloud storage, and networks that organize how data is stored and circulated). An analytically constructive focus in this literature has emerged by applying the concept of “assemblage” as a way of tracing how data moves: “where it flows, where it finds impasses, how algorithms act on it along the way” (270).
Lastly, the authors identify scholarship on “data activism” as an emerging focus on exploring how data technology capacities might be employed to promote social justice, collective action, and political participation, as well as to challenged dominant norms and ideologies: “Individual self-tracking data, for instance, can have social and political potential when it is pooled to identify health inequalities, collective environmental exposure, or disparities in quality of life (Gabrys 2014).” (271)
children were tested for lead poisoning and their was a correlation between those who had lead poisoning and those who were homeless or a victim to poverty.