Structural Racism as a Fundamental Cause: Caregiving Autism in the Margins during COVID-19

• In Event: Sociology that Advances Equity in Mental Health

Abstract

This paper examines how structural racism operates as a fundamental cause, drawing on the lived experiences of eighteen Black female caregivers of a child with autism before and during the COVID-19 pandemic. Rather than focusing solely on socioeconomic status as a primary upstream factor, this paper theorizes that structural racism operates as a durable organizing system that shapes differential access to flexible resources across healthcare, educational, and labor systems. The demographic characteristics of the sample also support theorizing the embodied experience of caregiving for a child with autism at the margins, using an intersectional lens to show how structural conditions are lived and navigated at the nexus of race, gender, social class, and disability. I argue that the persistence of inequality is not only a function of resource distribution but also of racialized and gendered institutional interactions that structure caregiving burden, labor expectations, and the ability to advocate and be taken seriously in institutional spaces on behalf of their child. The embodied caregiving experience of being Black, female, and, for some, single and living in extreme precarity, intensified these mechanisms of harm and outcomes. The temporal aspect of investigating service inequalities before and during the pandemic also leverages a period of disruption across many institutional systems to show how inequalities endure through shifting mechanisms of harm. Together, this research demonstrate how structural racism functions as a fundamental cause not only of health inequalities but specifically of stratified caregiving labor and access to autism services, thereby expanding the analytic purchase of this theory into the domain of lived caregiving realities and family health inequality.

Author

• Jennifer S. Singh, Georgia Institute of Technology