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Love Canal, USA

Misria

Residents of Love Canal, in the Niagara Falls region of Western New York, were alerted to signs of a toxic waste crisis involving the lethal chemical byproduct dioxin in the late 1970s. Residents learned about the crisis through news media, community activism and research, and their own visceral experiences – they could smell noxious fumes, noticed black sludge seeping into their basements, and saw children falling ill. Activists and academics carried out community-based research to survey the area in an effort to understand the extent of the hazard and its effects – data that they saw as missing, at the time – in turn generating evidence of changes in health and pregnancy abnormalities. In doing so, members of the community aimed to hold corporate and government stakeholders accountable to evacuate residents, organize remediation, and strengthen scientific studies and interventions to care for residents. Regional health authorities, however, dismissed community-based studies as “useless housewife data”. Activists responded by scrutinizing government and scientific studies, critiquing a lack of ecological validity and trustworthiness. Residents and community groups’ advocacy contributed to their exercise of epistemic authority, the creation of archival records and initiatives tracking the crisis over the last five decades, and wider public attention to Love Canal and other sites like it.

Image Description and Source: "Map showing distribution of symptoms believed to be caused by Love Canal pollutants," Digital Collections - University at Buffalo Libraries, May 1982.

Shankar, Saguna. 2023. "What's the Use of Data? Epistemic Authority and Environmental Injustice at Love Canal." In 4S Paraconference X EiJ: Building a Global Record, curated by Misria Shaik Ali. Kim Fortun, Phillio Baum and Prerna Srigyvan. Annual Meeting of the Society for Social Studies of Science. Honolulu, Hawaiti, Nov 8-11.

Louisiana, US_EiJ Paraconference

Misria

In Louisiana, governing elites have long found it more profitable to deny the connections between health outcomes and the structural inequities of an anti-Black petrostate. Their denial is made possible by the existence of data divergence–that is, inconsistencies between data sets or between a data set and the realities it purports to represent (Encyclopedia of Social Measurement 2005). These inconsistencies range from missing or “undone” (i.e. incomplete or ignored) data (Frickel et al. 2007) to the production of different measures (and the selection of different priorities) by institutional silos. Recognition of the need for public health capacities that address the systems and structures impacting health–especially children’s health–has motivated health equity advocates in Louisiana to fill the data gaps through collaborative datawork, that is, the work of making data meaningful across social and scientific communities. In 2022, a coalition of community organizations, academic researchers, and public health workers led by the Louisiana Center for Health Equity (LCHE), a community-based organization created by a registered nurse, worked together to examine the links between adolescent mental health and disciplinary practices in schools. Ensuring their agendas were informed by community priorities led them to incorporate the contributions of adolescents advocating for better access to physical and mental healthcare resources and the abolishment of discriminatory and punitive disciplinary actions in schools. Their collaborative datawork revealed how data gaps around adolescent mental health are a structuring component of schools’ discriminatory and punitive climates–much as gaps in environmental health data benefit polluting industries. They found that existing figures around adolescent mental health are inaccurate, as many youth are unable to receive an official diagnosis owing to lack of healthcare access. LCHE advocates at a house committee meeting in January 2023 reported that students who exhibit behavioral issues rooted in trauma or mental health more often receive punitive disciplinary actions rather than rehabilitative and restorative services. This work generated the support needed to pass legislation to expand public health infrastructure and access to mental health resources. In June 2023, House Bill 353 authorized the allotment of "mental health days" as an excused absence for students; introduced procedures for schools to connect students to medical treatment and services; and required the Louisiana Department of Education to develop and administer a pilot program for implementing mental health screening, among other changes. By mobilizing advocates and scholars from across the social and institutional silos, LCHE’s collaborative datawork tentatively expanded children’s public health infrastructures. 

Fisher, Margaux. 2023. "Collaborative Datawork and Reframing Adolescent Mental Health in the Deep South." In 4S Paraconference X EiJ: Building a Global Record, curated by Misria Shaik Ali, Kim Fortun, Phillip Baum and Prerna Srigyan. Annual Meeting of the Society of Social Studies of Science. Honolulu, Hawai'i, Nov 8-11.