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 text left me with a question that I actually often find frustrating in the process of research. On page 6, the authors take up the criticism of a Fukushima resident who says: “[W]hat you call research does not give benefits to local people” (Miyamoto and Ankei, 2008, cited in Ankei, 2013, p.24). The authors here suggest adopting or borrowing terms from the field that are used by citizens to create a more “socially robust science” (Bonhoure et al. 2019, Nowotny, 2003). From the authors' point of view, this can be achieved above all by paying closer and careful attention to the language of citizen organizations and the contexts these groups work in. After further elaboration, the authors call for citizen science terms and concepts developed by, for and with citizens to better reflect the values, priorities, and stakes of its main agents and of all concerned parties. But I am not sure that this approach alone would be sufficient to adequately address such expressed criticism. Perhaps one should ask about the expectations of people one is researching with/about in order to enter into a conversation and to be able to understand this criticism. Perhaps the authors will address this point again in further publications. I think to ask oneself how to deal with this criticism methodically and ethically could also be very fruitful for empirical research in general.
This text argues that the umbrella term citizen science has come to describe a variety of organizations and structures that function in a very different way. Not only does the notion of citizen science cover a wide variety of situations, but the term itself makes references to different types of organizations and is not neutral. Japan had forms of "citizen science" which pre-existed the introduction of the English term, as heirs to the development of more engaged scientific practices by politically inclined scientists in the 1970s.
The tensions within the use of the term citizen science and its diverse embodiments take the form of the following: basically, the concept of citizen science in Japan is mostly used in the context of top-down participatory approaches. The organizations that emerged after the Fukushima disaster are much more varied than this and exist within a framework that had been previously developed in Japan. This framework included visions of participatory and democratic science making by citizens, for citizens, and of citizens. They are mostly local organizations that are sometimes but not always affiliated to a network. Some of them cooperate with more formal institutions, while others steer clear of any collaboration with formal science or governments, partly because there is a lot of distrust towards these institutions in Japan, especially since the Fukushima accident.
One of the pitfalls of the reputation that citizen science projects have in Japan is that they are associated with the anti-nuclear movement and are therefore associated with the far left. This causes a need for distantiation from any political association, which some of the organizations studied use.