Dr. Cheney is attempting to answer the following question: What can we learn from the residents about their experience in living with asthma, and can this help us understand the disease?
There are very few hospitals in the area around the Salton Sea--only two in Imperial County and three in the Coachella Valley.
The "Disparities in Environmental Exposures and Health Impacts" project has four goals:
New and Alamo Rivers - transboundary movement
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)
Archiving is always political
"Observers of community archives have tended to distinguish between those politically and culturally motivated endeavours acting to counter to the absences and misrepresentations relating to a particular group or community in mainstream archives and other heritage narratives and those whose the inspiration is not so directly or overtly political or cultural, but rather is a manifestation of a shared enthusiasm for the history of a place, occupation or interest. Whilst it is an important distinction, the authors would also contend that even in the most nostalgic and leisure-orientated community archive projects there is something inherently political in individuals and communities taking an active role in the re-telling of their own history." (2013, 5)
Archivial imaginaries and futures:"Community-based archives may act as sites of resistance and subversion in the present and a map for future aspiration as much they are interested in documenting the past (Appadurai 2003)." (2013, 9)Independence as vulnerability"One of the consequences and dimensions of this commitment to independence and sustaining autonomy is the resulting dependence on the significant personal sacrifice (financial, physical and mental) of key activists and a network of volunteers, arising from great emotional and political commitment to the collections and their impacts. As we have already noted this commitment is both an enormous benefit to the archive but also a potential vulnerability with regard to the long term stability, succession and sustainability." (2013, 12)
Second wave community archiving
"[D]evelopments in the web and social technology were a significant factor in what in the UK we might term the second wave of community-based archives and heritage activities in the late 1990s and early 2000s." (2013, 13)
Search for definitions and the 'institutional gaze'
"[W]hy are “we” (and here we are referring not only to academics in archival studies, but also to archival practitioners) so focused on formulating definitions of and making distinctions between mainstream and community archives and their endeavors? For the most part, “we” are not the voices of, or even representing “community archives”– although that line is becoming more blurred with increased numbers of professionally-trained archivists coming from and returning to these communities. We are the ones applying the term “community archives” to these diverse social, political and cultural initiatives and we are the ones viewing their inception and flourishing as some kind of phenomenon or movement. But are they really, or is that our projection, possibly because we recognize how these initiatives address the shortcomings of our more traditional archival constructions and practices?" (2013, 14)