Brazil’s president, Jair Bolsonaro, has stated publicly that COVID-19 isn’t a problem for his country because Brazilians are characteristically tough. So tough that they can “jump into a sewer…and nothing happens” to them (Ortega and Orsini 2020). This blithe affirmation from the country’s highest leader is especially troubling since it is precisely infrastructural inequities like open sewers that expose Brazilians to many of the infectious diseases that kill and debilitate them—dengue, Chagas disease, tuberculosis, Hansen’s disease, cholera, chikungunya, and more recently the Zika virus (see Ferreira et al. 2020). Clearly, one need not bathe in sewage to become sick, disabled, or even die from structural inequality.
Much has been said about the effects of COVID-19 itself on bodies, populations, and health systems, but we are only beginning to think through the impacts of the response. The lockdowns and near economic standstill that characterize the “full stop” (Caduff 2020) will have aftershocks for years to come, and those aftershocks will surely—not to say inevitably—be unevenly distributed.
My current research centers on what comes after—not COVID, but the Zika virus (ZIKV). Since 2016 I have been working with families in the northeastern state of Bahia, Brazil who are raising children with Congenital Zika Virus Syndrome (CZVS) (see also my contribution to the Histórias of Zika series). This syndrome consists of a particular pattern of neurological malformations affecting sensory, motor, and cognitive development. Some of the children with CZVS have died, usually as a result of respiratory complications such as pneumonia (making the current COVID-19 pandemic especially worrisome). Most are still here, however, and many of them have multiple, lifelong disabilities. They will need care over the long term. The ones providing this care now are mainly women—their mothers, and/or grandmothers, and/or aunts, sisters, and other female kin. Fathers participate too in many cases, but the bulk of the care labor undeniably sits squarely on women’s shoulders. The ZIKV outbreak was concentrated in the Northeast region, at least in part because of poorer sanitation infrastructure and other indicators of social inequality, and 8 in 10 of those who gave birth to children with CZVS are black or brown. Many live in urban favelas or periferias (shantytowns or low-income neighborhoods), if not in poor rural areas. Since leaving Brazil in 2019, I have continued to be in touch with Bahian families primarily via WhatsApp, Facebook, and Instagram.
Like parents around the world, my interlocutors in Bahia had to adjust to the reality of being at home with their children 24/7. Like other families, they are constantly trying to find ways to keep their kids occupied, well fed, and sufficiently entertained (preferably with educational content)—all while making sure there’s enough money for the things the family needs and keeping their own spirits up. But for families with disabled children, lockdowns also mean that vital therapeutic activities, from occupational therapy sessions to equine and hydro-therapy, have been put on hold. Parents of children whose survival and wellbeing depend on regular therapy sessions and clinical visits are seeing sometimes drastic changes in behavior and wellbeing, as an anonymous author poignantly described in the case of her 8-year-old autistic son.
Stopping therapy and other activities is a reality for most if not all families, regardless of income, race, and location of residence. However, there are differences. Those with fast internet connections at home are more likely to reap the benefits of telehealth visits, whereas those who rely on faulty internet and/or cheaper cell phone data plans are less likely to do so. Those with cars have a much easier time transporting their children to clinics and hospitals if necessary, whereas those who rely on public transport risk heightened exposure for an in-office doctor’s visit. Those who live in middle-class areas have the luxury of isolating themselves in apartments, whereas those living in favelas find this nearly impossible. As many have now pointed out, far from being a “great equalizer,” COVID-19 exposes the structural vulnerabilities that make some populations more vulnerable than others to the effects of disease and its long-term effects (e.g., Ansari 2020; Bourgois et al. 2017; Tremain 2020).
The sudden diversion of health resources to COVID-19 response is killing people, not from the coronavirus, but from conditions for which they are not getting the care they need. This is especially true for underfunded, overburdened health systems in both the Global South and the Global North that have long been the victims of neoliberal austerity measures (Carney and Ostrach 2020). Death is certainly one outcome, but there are many others as well.
The impacts of quarantine on families raising children with CZVS are numerous and diffuse. One consequence is certainly the suspension of therapy sessions for an indeterminate amount of time. According to the virtual pamphlet issued by Brazil’s Ministry of Women, the Family and Human Rights, people with chronic illnesses “cannot stop ongoing treatments,” Yet that is precisely what many have had to do. One mother told me that the CBD (cannabidiol) oil her daughter had been taking to help control her epilepsy had run out and she couldn’t get more because the supply chain had been disrupted, so she’d had to go back to using the less effective (for her daughter) but more readily available prescription drug she used to take. Others expressed heightened anxiety about their children’s respiratory illnesses. One evening, around midnight local time, a mom decided against a trip to urgent care with her son who was inexplicably having multiple seizures despite having been given his usual dose of Rivotril, seeking advice instead in a WhatsApp chat group of other moms raising children with CZVS. (WhatsApp has been a kind of lifeline for these parents since very early on. Thankfully, the seizures soon subsided and the woman’s son was fine.)
“If possible, suspend trips to rehabilitation clinics,” advises the Ministry of Health pamphlet. This has been less a matter of choice than an imposition. Both public and private rehabilitation centers have shut their doors during lockdown. Some therapists continue to offer telehealth visits, but with something as hands-on as occupational or physical therapy, the effectiveness of online sessions is questionable. And, as one mother confessed to me, quarantine is “therapeutically complicated, since it shows that in most cases we don’t know how to deal with the limitations of our children, from physical therapy movements to simple play.” For small children with CZVS and other developmental disabilities, lost time can have long-term effects.
As I’ve discussed elsewhere (Williamson 2018), guidelines for early intervention issued by Brazil’s Ministry of Health say that the period between zero and three years of a child’s life is when brains and bodies are most malleable, and that intervention during this time is key for helping the child reach their maximum potential in the future. 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” (Brasil 2016, 9-10; my translation). UNICEF similarly alerts that for all children, “[i]n the brain-building process, neural connections are shaped by genes and life experiences – namely good nutrition, protection and stimulation from talk, play and responsive attention from caregivers. This combination of nature and nurture establishes the foundation of a child’s future.” For children with disabilities, the organization affirms, focused intervention is even more vital. Thus early childhood, as Michele Friedner (2020) recently noted, becomes an “emergency” period that demands that parents and professionals “ACT NOW,” launching into specific, almost predetermined therapeutic trajectories to give their children the best possible chance at life. Friedner asks, “What happens when a pandemic…throws a wrench in these trajectories? What other trajectories are possible and how does the discourse [of emergency] disallow other possibilities?” It is certainly worth questioning such discourse and the perhaps ableist and ethnocentric assumptions embedded within it.
In fact, most of the Brazilian children born with CZVS are now around four years old, and have therefore transitioned out of early intervention programs to longer-term therapeutic routines. For international health authorities, however, this doesn’t mean they’re out of the woods: the World Health Organization, based on recent neuroscientific evidence, extends the critical time, defining the early childhood development period as up to eight years of age. What kinds of stimulation and therapeutic intervention are kids with CZVS missing out on during quarantine? How is “missing out” unevenly distributed? And, what will be the long-term impacts on their development, their health, and their families’ wellbeing? With Friedner, I believe the current impossibility of certain kinds of treatment may open up an opportunity to productively question the framing of early childhood intervention as an “emergency.” What other possibilities emerge in the absence of institutional care? How might these possibilities themselves reflect longstanding patterns of inequality? The same mother who worried about lacking the skill to effectively handle therapeutic stimulation, herself a single mother whose ex-partner (and her son’s father) does not participate in his care, also said that being home all day with her son meant she was able to “learn more about [her] son, try to get some progress [avanços] that the [normal] routine doesn’t permit.” Since the “normal” routine involves running around the city to multiple appointments per week—a rhythm of life that is utterly exhausting for both children and parents—having to stay in place was in some ways a gift. This mother’s insight hints at “other possibilities” outside institutional regimes of therapy, or at least outside the draining daily trajectories many of these mothers and children. But it may also point to the hegemony of the discourse of “progress” as a taken-for-granted “good,” and it certainly indicates the deeply gendered nature of the labor of achieving children’s developmental progress.
As of this writing (May 4, 2020), according to official government data, Brazil now has over 101,000 confirmed cases of COVID-19 and over 7,000 known COVID-related deaths. Yet the actual number of cases is almost certainly much higher than the published numbers indicate due to underreporting. Testing has so far been done only on those who present symptoms (and, according to some reports, only on those whose symptoms persist and worsen), and discrepancies between the federal government and the states in counting tests administered has muddled the real numbers of people being tested, indicating that there may in fact be even less testing than the federal government is reporting. Scientists from around the country estimate that the number of actual cases is more than 1.2 million, and the Oswaldo Cruz Foundation (Fiocruz) has shown that the number of deaths in Brazil has doubled every five days, on average (see also this Reuters story in English from mid-April).
“What comes after the end of a disease is more often than not relegated to epilogues and usually comes up as an afterthought to the master narrative. Yet, diseases are often imprinted on the bodies of survivors, societies and cultures,” writes Dora Vargha (2016). I was doing fieldwork on an entirely different project when the Zika virus hit Brazil. While I collected quite a bit of data on the epidemic (indeed, it was difficult not to, as I was working on an ethnography of maternal and infant health policy), I knew that what was needed, at least as much as theorization of the epidemic itself, was sustained attention to its aftermath. (I am joined in this endeavor by a number of Brazilian anthropologists working in different parts of the country: Soraya Fleischer, Silvana Matos, Rosamaria Carneiro, Barbara Marques, Flávia Lima, Raquel Lustosa, Luciana Lira, Debora Diniz, Marta Moreira, and Anahí Mello, among others.) If we are to understand the full extent of the effects of the COVID crisis in Brazil, and especially on its most vulnerable (or vulnerabilized), we will need to closely examine, as Vargha contends, what happens afterward. The social sciences and humanities will be vital in attending to long term impacts (Reis Castro and Nogueira 2020; Rodrigues and Lira 2020).
We are all hoping that we will come to the end of COVID-19, at least in its current pandemic proportions, sooner rather than later. But infectious disease, as disability scholars like Catherine Kudlick (2014) have pointed out, has temporalities that exceed the limits of control and containment. So, too, do the methods used to control and contain. Much remains to be understood about the effects of lockdowns, many of which may not become wholly perceivable until weeks, months, or even years later. For Brazil, unless there is a radical change soon, the outlook is grim. Bolsonaro, a science denier who has repeatedly clashed with the World Health Organization, has now replaced the Minister of Health who had handled the pandemic from the beginning with one who has said that he is in “complete alignment” with the president. Others in Bolsonaro’s Cabinet have defended the President even as he continues to make callous pronouncements about the pandemic’s effects and berate governors and mayors for implementing quarantine measures.
After the Zika virus outbreak of 2015-16, families living with the virus’ long-term consequences had to struggle for their rights. Five years on, they are still struggling. It remains to be seen how this government, and the ones that follow, will address the ramifications of COVID-19 as well as the effects of containment measures.
Eliza Williamson is a cultural anthropologist who studies reproductive health care and disability in Brazil. Her first book manuscript tracks the implementation of maternal and infant health policy that seeks to “humanize” childbirth during a time of economic, political, and public health crisis. Her current research project attends to questions of care, disability, and the body in the aftermath of the Zika virus. She lived in Salvador, Bahia from 2015 to 2019, where she conducted her dissertation fieldwork and began working with families impacted by the ZIKV epidemic. She is currently a Postdoctoral Teaching Fellow in Latin American Studies at Washington University in St. Louis.
 In previous publications I have used different terms to refer to this syndrome: first SCAIZV, using the acronym for the Portuguese Síndrome Congênita Associada à Infecção pelo Zika Vírus (Congenital Syndrome Associated with Zika Infection), then CZS (Congenital Zika Syndrome). I have chosen to use the acronym CZVS here and in future publications because it more accurately represents the condition. While SCAIZV reflects the generalized uncertainty of the medical science at the time I was writing then, scientific consensus now points more conclusively to ZIKV as the main cause of fetal neurological malformation. CZS leaves out the word “virus,” which may cause confusion since Zika is also the name of the Ugandan forest where ZIKV was originally discovered in the 1950s.
Many thanks to Jean Hunleth and Anahí Guedes de Mello for their feedback on an earlier draft of this piece. Any remaining errors are wholly my responsibility.
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