Care After Zika: Parenting Disabled Children in the Wake of an Epidemic

This book manuscript is based on longitudinal ethnographic research begun in 2016, which follows a group of families in Bahia, Brazil who are raising children with congenital Zika syndrome (CZS). Beginning in 2015, thousands of Brazilian babies were born with neurological malformations linked to intrauterine infection with the Zika virus. In many cases, these malformations led to severe physical and cognitive impairments and resulted in multiple, life-long disabilities in affected children. Poor Afro-Brazilian women in the Northeast region of the country were the most exposed to the virus and most vulnerable to its reproductive consequences, and they are now caring for their children with nebulous prognoses in a national context of economic and political crisis.

What does it mean to cultivate disabled children’s developmental potential in the face of embodied uncertainty and the continual devaluing of black and disabled life in Brazil? This project is rooted in anthropological methods and modes of analysis but also draws on the critical frameworks of disability studies, feminist and queer theory, black studies, and science and technology studies. I weave these literatures together to interrogate core questions around the cultural and political dimensions of “disability,” futurity and potentiality, bodily permeability and “plasticity,” and the gendered and racialized nature of care work.

This project is currently supported by a Wenner-Gren Post-PhD Fieldwork Grant as well as a Small Grant from the Center for the Study of Race, Ethnicity and Equity (CRE2) at Washington University in St. Louis. I have published on this research in Cultural Anthropology, Medical Anthropology Quarterly and the peer-reviewed, interdisciplinary journal Interface – Comunicação, Saúde, Educação as well as in Somatosphere, Anthropology News, and Environmental History Now.

Birth in Crisis: Humanizing Childbirth in Brazil

My second book project picks up the thread of my original dissertation research, which I began prior to the Zika outbreak. Birth in Crisis is a critical ethnographic account of Brazilian maternal health policy. The Rede Cegonha (Stork Network) program attempted to reduce maternal mortality, combat obstetric violence, and address the country’s “epidemic of cesarean sections.” Rede Cegonha’s design, however, was heavily influenced by the largely middle-class “humanization of birth” movement in Brazil, which promotes low-intervention, respectful birth care and exhorts health professionals to de-medicalize their practices. Drawing on over two years of multi-sited ethnography, the book examines what happens when the universalizing concept of “humanized birth” is translated into policy for Brazil’s universal public health system.

I argue that in taking humanized birth as a guiding principle, Rede Cegonha fails to adequately address racial and gender inequalities that lie at the heart of the very problems the program is meant to tackle. Furthermore, the national program’s goals are often in tension with local concepts and practices of care in Bahia, and the narrow focus on childbirth fails to take into account the larger social, political, and cultural context in which especially Afro-Brazilian women experience pregnancy and birth, and in which reproductive health care is provided. Despite its failures, however, I show that Rede Cegonha’s implementation has nevertheless brought urgency to everyday ethical reflections around not just what constitutes good birth, but also regarding individual and collective responsibility within the broader, racialized moral economies of public healthcare in Brazil’s ongoing economic and political crisis.

This research has been supported by the Wenner-Gren Foundation for Anthropological Research, the Fulbright-Hays program, the Brazilian Studies Association, and the Rice University Social Sciences Research Institute. It won the 2017 Association for Feminist Anthropology Dissertation Award and the 2018 Rice University Center for the Study of Women, Gender, and Sexuality’s Visionary Partners Dissertation Fellowship, and I have published material from this project in Medical Anthropology Quarterly and Anthropology & Medicine.

Selected Publications

Williamson, K. Eliza. 2024. “Habilitating Bodyminds, Caring for Potential: Disability Therapeutics After Zika in Bahia, Brazil.” Cultural Anthropology 39 (1): 9-36.

Williamson, K. Eliza. 2021. “The Iatrogenesis of Obstetric Racism in Brazil: Beyond the Body, Beyond the Clinic.” Anthropology and Medicine 28 (2): 172-187.

Williamson, K. Eliza. 2021. “Interventive Care: Uncertainty and Cesarean Section in a Zika Virus Epidemic.” Medical Anthropology Quarterly 35 (2): 266-284.

Williamson, K. Eliza, Cíntia Engel, and Helena Fietz. 2023 “The Chronicity of Home-Making: Women Caregivers in Dis/Abling Spaces.” Space and Culture 26(3): 468–482.

Williamson, Eliza. “What Comes After COVID-19.” Somatosphere. Series: “Dispatches from the Pandemic” (curated by Christos Lynteris). May 10, 2020.

Williamson, Eliza. “Afterlives of Zika.” Environmental History Now. Series: “Politics of Nature.” January 26, 2021.

Williamson, K. Eliza. “Against Forgetting: Telling Stories After Zika.” Somatosphere. Series: “Histórias of Zika” (curated by Luísa Reis-Castro). January 6, 2020. [Portuguese & English]

Williamson, K. Eliza, and Etsuko Matsuoka. 2019. “Comparing Birth in Brazil and Japan: Social Hierarchies, Cultural Values, and the Meaning of Place.” In Birth in Eight Cultures: A Crosscultural Investigation. Robbie Davis-Floyd and Melissa Cheyney, eds. Long Grove, IL: Waveland Press.

Williamson, K. Eliza. 2018. “Care in the Time of Zika: notes on the ‘afterlife’ of the epidemic in Salvador (Bahia), Brazil.” Interface – Comunicação, Saúde, Educação 22 (66): 685-696. [English PDF / Portuguese PDF]

Williamson, Eliza. 2017. “Whose Responsibility? Reproduction and Care in the Time of Zika.” Anthropology News 57(5).

Williamson, Eliza. 2016. “Humanizing Birth in Bahia, Brazil.” Anthropology News 57(3).

Williamson, Eliza, and Mounia El Kotni. “Childbirth in the Americas: Introduction.” Anthropology News 57(2).