This post is part of a series on Politics of Nature, in which contributors explore the diverse and complex relationships of humans and their nonhuman environments, as they are framed by politics, broadly construed. The series showcases the ways in which thinking about, writing about, and acting within nature has affected these relationships.
Almost every day this week, at least one of the children I met in Bahia, Brazil is turning five. These are kids who, about five years ago, were given grave prognoses and predictions of low life expectancy: many mothers were told their babies would die soon after birth, would not make it to their first birthdays, or be “vegetables” for however much time they had left. Birthdays are special for any kid, but reaching this five-year mark is nothing short of miraculous in the eyes of their parents precisely because longevity is simply not a given for children with congenital Zika syndrome.
The discovery and global trajectory of the Zika virus (ZIKV) is now well-documented. It arrived in Brazil around 2014, where it caused the largest outbreak yet seen. What brought Zika to international headlines was not the virus itself, but instead the precipitous rise in cases of microcephaly (small head size due to incomplete brain development) and other neurological malformations between late 2015 and early 2016. Brazil was where doctors and scientists discovered that in pregnant people, ZIKV can pass through the placental barrier and infect the fetus, leading to an increased risk of preterm birth, fetal death, and stillbirth as well as fetal malformations. In utero, the virus disrupts fetal brain cell development, producing the pattern of anomalies now known as “congenital Zika syndrome” (CZS).
The World Health Organization declared Zika an international public health emergency in February of 2016, a status that lasted only until November that same year due to a decline in the number of new reported cases and a slowing of the virus’ global spread. However, this does not mean Zika is “over.” The virus continues to circulate in several regions of the world, and scientists warn of future outbreaks. It also remains a haunting presence in the lives of thousands of families across Brazil. Between 2015 and November of 2020, there were just under 19,492 suspected cases of congenital Zika syndrome reported in Brazil, 3,563 of which have been confirmed.[1] Because of the virus’ impacts on neurological development, most children living with CZS are multiply disabled and will depend on care for the rest of their lives.[2]
Since 2016, I have been following a group of parents and children in the northeastern state of Bahia, who are living in the long shadow of the Zika outbreak. This is the beginning of what I hope to be a long-term ethnographic project that tracks Zika-affected Bahian families over the next several years. My engagement with the families has so far included volunteering at a local support group for families impacted by Zika, informal and formal interviews with parents and rehabilitation therapy professionals, observing “early intervention” sessions for children, and just plain hanging out with parents—mostly mothers—and their kids. During my time in Bahia, and since I left in July of 2019, I communicate with my interlocutors via social media, especially WhatsApp. My research questions focus on the afterlife of the 2015-2016 Brazilian Zika virus epidemic in the bodies and worlds of Bahian families.
At the core of this project is the question: what does it mean to live on in the aftermath of the Zika outbreak? This “living on” takes many forms, and aftermath is multiple. That is, in thinking what comes after, and how this “after” materializes in my interlocutors’ bodies and lives, I am obliged to think of the convergence of multiple, perhaps inextricable, afterlives, of various temporal and scalar dimensions. I am also obliged to attend to processes of becoming in these afterlives, methods of making do, ways of finding joy, modes of attending to bodies in search of the good life—as well as the hardship and desperation that also marks my interlocutors’ worlds.
From birth until three years of age, the Brazilian Ministry of Health recommends that children born with disabilities be placed in early intervention programs in order to encourage “the best possible development” for these children. The first three years of life constitute “the phase in which the brain develops the fastest, constituting a window of opportunities for the establishment of the functions that will lead to good health and optimal productivity in the future.”[3] It is a race to reap the maximum possible benefit from therapeutic intervention while the child is still very young and neurologically malleable. In global health circles, the early childhood period is defined as extending up to the first eight years, “a time of remarkable growth with brain development at its peak.”[4]
As Luísa Reis-Castro has written for EHN before, the Zika virus struck Brazil at a time of political upheaval. Its aftermath is also unfolding in an ongoing crisis. In 2015, the country was already deep into an economic recession, and it would soon see the impeachment of one president (Dilma Rousseff), the unpopular interim presidency of her substitute (Michel Temer), and then the rise of extreme-right Jair Bolsonaro. In 2017, under Temer, the Brazilian Congress passed Constitutional Amendment 95, or what opponents call “the Constitutional Amendment of Death,” which effectively froze public spending on education, social assistance programs, and healthcare for the next two decades.[5] This amendment effectively lays the burden of reigning in the recession upon those already most vulnerable to it, and it bodes very poorly for families who rely on public health services for their disabled children’s treatment—this includes the majority of families living with the embodied consequences of the ZIKV outbreak. Now, the Covid-19 pandemic has even further weakened the already overburdened public health system.
How do parents navigate precarious health care infrastructures being further weakened by public spending cuts, and now further devastated by Covid-19? What will be the aftermath of these austerity measures, of the current pandemic, and of the country’s ever-worsening economic crisis under Bolsonaro?
It is no small detail that those most impacted by Zika are Black Brazilians: one in eight of those who gave birth to Zika-affected babies are Black.[6] Yet this is unsurprising considering Brazil’s pronounced and enduring racial inequality. On average, Black Brazilians have a lower life expectancy than white Brazilians (67 vs. 73 years).[7] Black people represent about 55% of Brazil’s population, yet they make up 75.7% of all homicide deaths.[8] When the government emphasizes the need to encourage children’s developmental potential, what future is being potentialized? Which bodyminds are potentializable?[9] What does it mean for parents and health workers to cultivate these children’s developmental potential in the face of not just uncertain prognoses and systemic attacks on Black and disabled life in contemporary Brazil? What does it do to the bodyminds of mothers to care intensively for their children in a social and political context that does not support them in doing so? How is the current Covid-19 pandemic—and the measures implemented to contain it—shaping this care, and what impact will its aftermath have on the families?
Anthropologist and performance studies scholar Christen Smith (2016a), drawing on Black doctor and community organizer Andreia Beatriz dos Santos, uses the term “sequelae” to attend to “the gendered, reverberating, deadly effects of state terror” that are visited primarily on Black mothers “living in the deadly fallout of the modern, heteropatriarchal, neoliberal, White supremacist democratic American nation-state” (p. 32). Continuing on, “The sequelae that Black mothers experience are the fallout of state violence because like the eventual death caused by the radioactive particles left behind after a nuclear bomb, the slow death that sequelae produce are one of the many pre-determined consequences of this form of terror.”[10] Here, Smith is writing on antiblackness not just in the United States, but also in “another America”: Brazil.[11] Her object of study is Black resistance to police violence, which she has written extensively on in the context of Salvador.[12]
In what ways might the physical and affective sequelae of Zika, in concert with the physical and affective sequelae of state terror that routinely cuts Black lives short, contribute to “slow death”? How might we understand these sequelae as (also) part of the longer “afterlife of slavery,”) and particularly its gendered effects on Black mothers and children? How do these multiple afterlives materialize in the body(mind)s and “skewed life chances” of Black Brazilians living with infectious disease-induced disability? And, might mothers’ practices of care for their disabled children, their insistence on cultivating their children’s potential via rehabilitative medicine, gesture toward a different future?[13]
Families’ practices of care in the face of these adversities raise fundamental questions about human potentiality in contexts of racialized social inequality, as well as care and “cure” of disabled bodyminds and the politics of health in neoliberal regimes of governance.
It is important to attend to the unequal distribution of the afterlives of epidemics and pandemics. And, while always keeping in view the inequities that produce these unequal effects, it is also vital to attend to the worlds that emerge in the wake, and to understand these worlds as heavily shaped through, but not wholly determined by, the epidemic past that is not past. Over the next several years, I plan to continue dialoguing with the Bahian families in my research to understand how Zika lives on, and how the families do too.
[1] Ministério da Saúde do Brasil, “Situação epidemiológica da síndrome congênita associada à infecção pelo vírus Zika em 2020, até a SE 45,” Boletim Epidemiológico 51, no. 47 (November 2020).
[2] Microcephaly, or microcefalia in Portuguese, has become shorthand for the congenital effects of ZIKV, but it is actually only one of the manifestations of CZS. Others include brain calcifications, ventriculomegaly, eye abnormalities, congenital muscle contractures, and hypertonia. Many of the children have seizure disorders, and there have also been reports of hydrocephalus and arthrogryposis. A number of the parents I know also report immune deficiencies and, in particular, heightened risk of respiratory infections such as pneumonia, making the current Covid-19 pandemic all the more worrisome for their families.
[3] Ministéro da Saúde do Brasil, Diretrizes de estimulação precoce: Crianças de zero a 3 anos com atraso no desenvolvimento neuropsicomotor (2016).
[4] See e.g. UNESCO on “Early childhood care and education.”
[5] Fabiana Reinholz, “Emenda 95, o enfraquecimento do pacto social,” Brasil de Fato 3 (October 2018).
[6] Fabiano Maisonnave, “Oito em cada dez bebês com danos do zika nascem de mães negras,” Folha de São Paulo (September 12, 2016).
[7] Leilane Menezes, “Uma chance de envelhecer: Os desafios para garantir longevidade à população negra,” Metrópoles (September 29, 2018).
[8] Agência IBGE Notícias, “População chega a 205,5 milhões, com menos brancos e mais pardos e pretos” (November 24, 2017). I am including both pretos (dark-skinned black) and pardos (light-skinned black, “brown,” or mixed-race) in the category “Black,” as is common practice among scholars of race in Brazil.
[9] Borrowing from disability studies scholars such as Sami Schalk, Eli Clare, and Alison Kafer, I use the term “bodymind” to refer to the inseparability of body from mind, moving away from Cartesian mind-body dualism.
[10] Christen A. Smith, “Facing the Dragon: Black Mothering, Sequelae, and Gendered Necropolitics in the Americas,” Transforming Antropology 24, no. 1 (April 2016): 32.
[11] I’m borrowing this phrase from the title of Edward O. Telles’ book, Race in Another America: The Significance of Skin Color in Brazil (Princeton, NJ: Princeton University Press, 2004).
[12] See Christen A. Smith, Afro-Paradise: Blackness, Violence, and Performance in Brazil (Champaign, IL: University of Illinois Press, 2016)
[13] Dána-Ain Davis, Reproductive Injustice: Racism, Pregnancy, and Premature Birth (New York, NY: NYU Press, 2019); Saidiya Hartman, Lose Your Mother: A Journey Along the Atlantic Slave Route (New York, NY: Farrar, Straus and Giroux, 2008).
*Cover image: Parents with children protesting at a state-sponsored “health solutions fair” in Salvador, Bahia in August, 2017. Photo by author.
[Cover image description: A line of parents standing with white poster board signs with black handwritten lettering, some also holding small children. Their faces are serious as they pose for a local news cameraperson.]