Since the Zika virus hit the headlines in 2015, thousands of children and their families in Brazil were affected and have been living with the consequences, such as the intense daily care, therapies and treatments needed, ever since. Five mothers whose lives have been completely changed as a result of the impact of the Zika virus on their children share their stories of strength, survival and love in a series of short films they have written, co-produced and co-directed.
The films highlight how disease outbreaks, like Zika or Covid-19, not only have enormous impact on individual families but also expose and are shaped by the inequalities – economic, social, health and more – in which they emerge.
As likely in Covid-19, the caring responsibilities and economic hardships caused by Zika fell on women the hardest and the poorest and most vulnerable communities. They shine a light on the capacity of communities to respond to these challenges and learn from the Government response and the need for carefully designed state support around housing, education and social protection, as well as health.
The short films were produced as part of a project to promote well-informed dialogue and collaboration between affected groups and service-providers about the biological, social and emotional effects of Zika.
The five mothers, all with children with the Zika Congenital Syndrome (ZCS), bring to the forefront their emotions about the daily discoveries, routines, mobility struggles, work, barriers and dedication that characterise their lives.
Susana Lima, 28 years old from Recife, Brazil, mother to three year-old Wilian who has ZCS, says “Regardless of the seriousness of his disability we have to love our children and fight for him to the end.”
“He fought hard to survive so I fight for him”
A Trail of Life, created, written and directed by Susana Lima
Daniel, My Miracle, created, written and directed by Jaqueline Vieira
My Warrior, Tom, created, written and directed by Andrea Avelino
The Love of a Father, created, written and directed by Crislene Feitosa
The short films were made by the women with support from the Centre for Family, Gender and Sexuality Studies (FAGES) at the Federal University of Pernambuco. Until March 2019, the Institute of Development Studies (IDS), along with the CORTH research centre at the University of Sussex, and the Federal University of Pernambuco had a joint Newton Fund Institutional Links grant which sought to promote dialogue and collaboration between affected groups and those working in the health and other services about the biological, social and emotional effects of Zika, and to examine the state support provided. UFPE received additional funding from the Brazilian government by way of CAPES at the Ministery of Education, CNPq at the Ministery of Science and Technology and DECIT at the Ministry of Health.
Project Research Officer Isabele Bachtold reflected on the lessons that can be learned from the Zika outbreak to help inform government responses to the Covid-19 pandemic in a recent webinar organised by IDS with partners in Brazil. Project lead Professor Russell Parry Scott from FAGES also joined the online discussion.
Watch Isabele Bachtold at 16 mins 42 secs in this video.
You can also learn more about the project and hear from the researchers who worked on it here.