Greiner, Rosamund Sophia; (2024) Gender, disability, and care: an ethnographic study of Congenital Zika Syndrome in Barranquilla, Colombia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

The 2015 - 2018 Zika virus epidemic in the Americas resulted in the births of thousands of children with microcephaly, brain calcifications, and other damage to their nervous tissue. The cluster of symptoms associated with in-utero exposure to the virus has since been named Congenital Zika Syndrome (CZS). Many children born with the condition have significant additional care needs, and for most of them, their mothers provide the majority of this care. This thesis is an ethnography of families raising children with Congenital Zika Syndrome in Colombia, and the mothers in these families are the primary participants in the research. I adopt a critical perspective to explore the interlocking themes of gender, disability and care through an analysis of their experiences of caring for a child with CZS. I explore the gendered division of labour that concentrates care work with the mother, and how this intersects with ableist discrimination against the child. I illuminate the barriers these women face as they try to access healthcare and education for their children, and their responses to these barriers. I discuss how mothers conceptualise their child’s disability, and how they themselves experience discrimination and disablement, mediated by their caring role. Finally, I will examine how they experience time and think about their future with their child, in both individual and collective terms. In this thesis, I draw on a range of disability theory, feminist perspectives, and decolonial thought, with a particular focus on Latin American Critical theory. I contribute a more complete theorisation of CZS as a disability. I also demonstrate how the intersection of gendered oppression and disability discrimination shape these mothers’ experiences. I find that examining the interconnected experiences and embodiment of mothers and their children together is essential to arrive at a fuller understanding of the experience of raising children with CZS.

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