Contested Illnesses: Citizens, Science, and Health Social Movements

Co‐created environmental health science: Identifying community questions and co‐generating knowledge to support science learning

“…We argue that when working with underrepresented communities, the burden of relating to the traditional scientific communities should not be the goal and absolutely not be placed on the learner. We argue the opposite, to support just science teaching and learning and social transformation, a co‐created model is needed, but needs to extend the value and uses of science and incorporate a diverse toolbox to address the political, economic, and social structures that create disproportionate environmental health burdens for communities of color and communities in poverty (Brown, 2017; Corburn, 2002; Cordner et al, 2012). Also, along with technical and scientific knowledge, community driven work conducted in partnership with a university should also leverage their proximity to the power and prestige of a university, which may be an invaluable resource for academic allies to leverage on behalf of EJ communities.…”

“…Furthermore, conventional intervention, health promotion and education strategies have largely failed to mitigate the sources of environmental health risk for EJ communities because the strategies often address health at the individual behavior level rather than interacting with relevant social, cultural, and political contexts (Masuda et al 2010). EJ communities may possess nuanced knowledge of local sources of environmental health risk, but lack regulatory enforcement or formal channels to pursue action (e.g., Brown, 2017). Due to the history in EJ communities and lack of trust between community members and decision-makers, these communities frequently: (1) do not trust the data being generated by officials, (2) experience technical elitism; expert control over their community concerns and observations, (3) have limited scientific literacy, which prevents engagement with and ability to interpret data and combat expert biases, (4) suffer from information disparities, which are the knowledge differences between the potentially affected community and government and industry stakeholders (Emmett & Desai, 2010).…”