Sharing Stories

Abstract

The focus of this study is the role of health narratives play in mobilization when shared among community members experiencing exposure to air pollution from numerous sources of industrial pollution. Grounded in the practice of community-based participatory research, The Stories Project (as the collection of narratives has been colloquially named) highlights various aspects of both the process and outcome of community and academic partnerships. Drawing attention to the process illustrates the complexity of such relationships in the field, and how an understanding of these relationships is vital to successful engagement of community members in such studies. The process of storytelling became the tool for successful mobilization in this community. Narratives became strategies and vehicles for social justice. Throughout, the reflexivity of the researcher also informed the process. It is this complexity that serves as the primary focus of the study, for intertwined in a reflection of storytelling and empowerment is the role the researcher plays in such outcomes.

Disability Research Principles

“…Such fractures are what Morris (1992) calls alienated research. A common response across the literature is the call to strengthen the voices of those who are marginalized, to develop alternative understandings of disability or difference, and to resist dominant discourses that reinforce (neoliberal) tenets of individualism and independence (Arstein-Kerslake et al, 2020;LeBlanc & Kinsella, 2016;Newbigging & Ridley, 2018;Robinson, 2016;van der Weele, 2022). How this can be done, however, becomes easily complicated.…”

“…Scott (1991) also addresses how interpretation and inclusion of experience is always partial and, therefore, requires an analysis of how knowledge is produced in ways that give meaning to experience, as it is experienced. Such an analysis is echoed by scholars who advocate for critical reflexive practices that challenge dominant assumptions about how knowledge is produced and who is involved in its production (Arstein-Kerslake et al, 2020;Coons & Watson, 2013;Karnieli-Miller et al, 2009;LeBlanc & Kinsella, 2016;Newbigging & Ridley, 2018;Rice, Harrison & Friedman, 2019;Robinson, 2016;van der Weele, 2022). Recall how Jones considered where to locate herself in her research, her "proximity to disability justice," leading her to cede ground to deserving leaders of the movement.…”

“…What is required to ensure that communities-paid or not-are more than informants (Dutta et al, 2022;Fraser, 2017;Robinson, 2016;Stone & Pristley, 1996), and that their wealth of knowledge is not distorted in translation? Arstein-Kerslake et al ( 2020) recommend ensuring that research findings are made accessible to diverse communities.…”

Using the Community Engagement Framework to Understand and Assess EJ-Related Research Efforts

“…When communication was bi-directional and partnerships were formed on each aspect of the project from development to solution, collaborative engagement was realized [40,43,53,55,56,[65][66][67][68][69][70][71][72][73][74][75]. Shared leadership was exemplified when community concerns were prioritized, diverse coalitions were formed, and final decision making was made at the community level [45][46][47][48]50,[76][77][78][79][80][81][82][83][84][85][86]. The highest level of engagement, described as community-led, was demonstrated when communities set their own research questions, selected partners for collaboration, and managed the implementation of solutions and dissemination of findings [87][88][89][90][91][92][93][94][95][96][97][98][99].…”

A Scoping Review of Capacity-Building Efforts to Address Environmental Justice Concerns

“…The article by Cohen et al [79] discusses the application of community-driven hypothesis generation/testing, the training of community surveyors, and collection of environmental health survey data to document and quantify neighborhood concerns. The article by Loh et al [109] describes community-based research efforts that entail the training of residents to monitor and collect particulate matter samples to document air pollution "hot spots" contributing to high rates of asthma. The article by Green et al [100] details the implementation of a comprehensive community-based environmental risk assessment involving the facilitation of focus groups to assess the relevancy of strategic initiatives and social action materials.…”