Debora Diniz is an anthropologist and law professor at the University of Brasilia. Diniz’s research draws directly on the narratives of families with children affected by Congenital Zika Syndrome (CZS). She aims to describe and analyse the socio-economic impacts of the Zika epidemic on the lives of families with children affected by CZS. In this presentation she discusses her latest research in northern Brazil on Care, Health and Stigma Among Families Affected by the Congenital Zika Syndrome’.

Video: Debora Diniz - The Legacy of Zika | Wellcome Trust

Diniz has collected narratives and visual documents about the needs and violated rights of women and their affected children, and she aims to investigate how an epidemic like Zika has a gendered legacy in the context of a weak social state. The three main pillars of Diniz’s investigation are:

  • Care - how families, and women in particular, have been coping with the care demands of children affected by CZS

  • Health - how the epidemic has affected women’s and men’s beliefs, attitudes and practices related to family planning, and sexual and reproductive health

  • Stigma - what the various manifestations of stigma and discrimination are that families may be experiencing because of their children’s disability

In this presentation, Diniz discusses how she reached, engaged with and development connections with these communities. She talks about her use of WhatsApp (and more widely the opportunities for engagement through social media) and emphasises the importance of continual engagement with communities beyond defined research projects. Diniz also argues that in the context of, potentially recurring, epidemics, sustaining engagement amongst and within communities is as important as sustaining engagement with researchers.

Diniz has also written a book on this topic, entitled ‘From the Brazilian Backlands to Global Threat’. In the book, Diniz travels through Northeastern Brazil, the region of the country where the 2014-15 Zika virus outbreak was first identified. Diniz aims to trace the virus’ origin and spread and observe its impacts on local communities. This is a frontline account, featuring interviews with doctors and Zika-affected mothers and discussing the reluctance of the Brazilian government to recognise the severity of the outbreak. It also highlights grassroots work by local doctors and mothers in campaigning for greater awareness of the virus, and improving the rights of children born with congenital Zika syndrome.


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