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Towards Critical Studies of Disabilities: engaging Latin American theoretical perspectives on Congenital Zika Syndrome

Rumo aos estudos críticos da deficiência: engajando perspectivas teóricas latino-americanas sobre a Síndrome Congênita do Zika

Abstract

Infection with the Zika virus during pregnancy can cause disability, yet disability remains under theorised in studies on Congenital Zika Syndrome (CZS). Existing studies are largely exploratory and descriptive in nature, and thus a deeper analysis is needed. Where theory has been applied, there is limited engagement with Latin American theoretical perspectives. The social construction of disability, and of caregiver identity in particular warrant further analysis. Understanding that disability is constructed through an ‘ideology of normality’ can help make sense of parents’ reactions to a diagnosis of CZS. Caregivers resistance to biomedical narratives about disability is apparent in the case of CZS and deserves further attention. Consideration has been given to the ways that social location and shared temporality in relationships of care shape caregiver identity. Here I read these together to reach a fuller understanding of how caregivers and the people they care for develop a shared embodiment. An analysis bringing together Latin American Critical Disability Studies with other critical theoretical perspectives can advance theorisations of disability and the experiences of caregivers in their social, political, economic and historical contexts.

Keywords:
identity; parent; carer; disability

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