Author: Eliza Williamson, a cultural medical anthropologist researching reproductive health policy and childhood disability in Bahia, Brazil. You can contact her at firstname.lastname@example.org
Fieldsite: Bahia, Brazil. This piece draws on my observations of a chat group on WhatsApp in which parents of children with Congenital Zika Virus Syndrome share information, resources, and mutual support.
I open WhatsApp and scroll through a chat group of parents—mostly mothers—of disabled children in Brazil. There’s an early morning prayer for strength to get through this “plague,” including a plea to stay at home and a reminder that “God is in command, always!” This is followed by a link to an article explaining how to get emergency assistance money from the federal government. Then a forwarded video clip of an Evangelical pastor preaching unity and faith in Jesus, which is met with several appreciative “amens” and the “praise hands” emoji. Someone posts the calendar of emergency government benefit payments in response to another group member’s request. One of the moms announces that she knows this group is not to be used for sales but that she’s selling Eudora makeup products and that other moms can send her a private message if interested. There appear several photos of children sitting next to colorfully wrapped chocolate Easter eggs, some with chocolatey grins—telltale signs of having enjoyed said egg.
This is a chat group I was added to with permission from the parents in 2016, when I began doing fieldwork with families impacted by the Zika virus epidemic in the northeastern state of Bahia. Since then I have checked in sporadically to see what’s going on, staying in touch especially with a handful of moms with whom I am closest. Most of the children are between 3 and 5 years of age, and they and their parents are majority Afro-Brazilian. Most families live in or around the city of Salvador, the capital of the northeastern state of Bahia.
Since leaving “the field” and beginning a postdoc in the U.S., I’ve checked the group with decreasing frequency, tied up with teaching duties and pressure to get publications into the pipelines. But when the COVID-19 crisis began, I opened the chat group for the first time in a while. I was worried about how this pandemic would impact these families, the majority of whom live in periferias (low-income neighborhoods, more often called favelas elsewhere in Brazil), and many of whose children have immune system and respiratory issues that make them particularly vulnerable to infections like the novel coronavirus.
The messages I described above are mundane, but they reveal something about the lives of the group members. Most identify as Christians and many are Evangelical. A large number rely on government assistance programs to feed their families, and some supplement their income by reselling beauty products (or clothing, or other items) to friends and family. During quarantine for COVID-19, advised not to leave their homes to celebrate Easter with family and friends, they circulated pictures of their children enjoying the spoils instead. More importantly, however, these messages demonstrate the importance of social media for these families, who use WhatsApp especially to share both information and affection.
Since the pandemic began, many of us are experimenting with novel ways of being together apart. Quarantine measures have brought many changes to the lives of these Brazilian families, but the use of WhatsApp to stay in touch remains a constant. As others have pointed out, WhatsApp and other social media platforms are ambiguous territory in an epidemic (or a pandemic). In the beginning of the Zika virus outbreak in Brazil, rumors and false information about expired vaccines and pesticides being the real cause of fetal malformations gained traction in WhatsApp chat groups. I have found that, at least in the groups I participate in, for every unfounded rumor there is at least one person willing to question it and at least attempt to combat it with verified information. In any case, the fact is that WhatsApp is here to stay, and it continues to be an important tool for families raising disabled children in the aftermath of the Zika virus epidemic.
This is a group of people all too familiar with crisis and uncertainty. When congenital malformations such as microcephaly were first linked to ZIKV infection, pregnant mothers and parents of affected newborns were caught completely off-guard. ZIKV was at first thought to be a milder and relatively harmless version of dengue, but the subsequent births of thousands of babies with microcephaly and a range of other neurological malformations proved otherwise. As parents cared for children with this novel condition, they had to seek information in more than one place. Doctors and therapists were learning right along with them and could only offer prognoses and advice based on cases of children with conditions such as cerebral palsy, which many of the CZVS children also have. Uncertainty became a fixture in the lives of these families, for whom there were no solid answers. This is added to the fact that, due in large part to social determinants such as poor water and sewage infrastructure, informal housing, and lack of access to preventive measures for sexually transmitted infections (which ZIKV also is), most of the families affected were already living precarious and uncertain lives long before the epidemic. Indeed, it is this redoubled precarity that makes them some of the most vulnerable to COVID-19.
In many ways because of the uncertainty surrounding their children’s condition, these are also people who are adept at using social media to connect with each other. Whether they are posting or commenting on short narratives and photos on Facebook and Instagram or sharing information, desabafando (venting), and even debochando (teasing or making fun, keeping things light) via WhatsApp, social media was an important way to keep in touch even before COVID-19. Now, however, quarantine has compounded the importance of connecting virtually.
Correria vs. quarantine
Unlike some people with disabilities and chronic illnesses for whom being “housebound” is the norm, my interlocutors are all but required to be hyper-mobile. Institutions providing therapy and medical services, pharmaceutical drugs, orthotic equipment, and other necessities are spread out over the city. Under “normal” circumstances, mothers leave their homes several times a week to take their kids to their various therapy sessions and doctor’s appointments, to retrieve the month’s supply of seizure medication from the hospital or health post, to pick up basic necessities like food and diapers at a local charity organization or the municipal support center, and, frequently, to take their immunocompromised children to emergency rooms when they become ill. This is their daily correria—their exhausting “running around” from place to place to get what they and their families need. Furthermore, most of them travel on public buses to do all of this, exposing themselves and their children to the elements and to hundreds of other people daily, not to mention the inaccessible infrastructures such as broken bus elevators for wheelchair users (which many of their kids are).
All of this correria had to come to a halt in mid-March, when the state of Bahia declared a state of emergency, urging residents to stay at home as much as possible. In fact, both the city and the state of Bahia went against Brazil’s president, Jair Bolsonaro, who as of this writing continues to refuse to approve national quarantine measures or even to take COVID-19 seriously, and who had just fired his Minister of Health mid-pandemic. In any case, Bahia’s quarantine means that regular physical, occupational, and speech therapy sessions aren’t happening, nor are doctor’s visits and intermittent diagnostic testing. And visits to emergency rooms and urgent care facilities—not uncommon for children with compromised immune systems and particularly vulnerable to respiratory infections like pneumonia—suddenly became a lot riskier.
In the WhatsApp group, parents share resources about COVID-19 and how best to protect themselves and their families. PDF fact sheets, a link to download an app created by Brazil’s public health system to inform the public and track possible cases, a forwarded message from a registered infectious disease specialist in the nation’s capital explaining the importance of preventive measures against the virus, a news report on how many confirmed cases Bahia now has, contact information for the local branches of the epidemiological surveillance service, and an announcement that therapy services would be suspended for the duration of quarantine following municipal decree.
They also offer support to one another during episodes of illness and exacerbation of chronic conditions. Rather than potentially expose a child to COVID-19 on a trip to the hospital or urgent care facility, which is where they would usually go, they rely even more on each other’s experiences and homegrown expertise. If a child starts having seizures late at night when doctors and therapists would not be answering the phone, as happened several nights ago, this is where they come to ask for advice from other parents.
WhatsApp is also used to organize actions to assist families in need. For example, a local support center run by the Salvador city government began distributing cestas básicas (food baskets including basic staples like rice, beans, and milk) to families raising children with CZVS. But not all of those for whom they were intended were able to access them. Some families hadn’t updated their registration information at the support center recently enough; others have children whose diagnoses did not include microcephaly, which was one of the (rather arbitrary) requirements of this particular emergency distribution program. In order to help supplement for the excluded families, mothers with more economic means collected donated packages of pasta and crackers and arranged for one of the moms with a car to pick them up from a warehouse and distribute them to residents in the government-subsidized housing complex where many live.
Quarantine as a “two-way street”
What is quarantine like for individual families? I continue to explore this question, but here are some thoughts from one mother who has given me permission to share the content of our recent conversation. I will call her M.
Quarantine, said M., is “a two-way street” (uma via de mão dupla); it has positive as well as negative effects.
There is of course “the boredom and the obligation to be at home and the fear of contamination,” with which many of us can identify. There is also “the absence of a routine,” which has “messed things up [atrapalhado] a good deal” for many families, “since some of the children aren’t sleeping, are irritated…” M. told me that her own son had gone for a full 36 hours without sleeping, which in turn made her “go nuts” (surtar).
Quarantine also means that children’s regular therapy appointments have been interrupted indefinitely. Therapists work with these children on everything from building cervical spine strength to hold their heads up to exercises to encourage development of mouth muscles to chew and swallow food without choking. Thus, quarantine is also “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.” But on the flip side, having to be home all day has provided “a moment where we can take advantage of learning in diverse areas.” Here M. meant parents learning about their children. During a typical day, parents might take their kids to two or more clinical appointments. Since most rely on public transportation and Salvador’s traffic can be a beast, this means several hours at a time na rua (in the street). Often, there is barely enough time to prepare meals at home and take care of whatever other tasks need doing, to say nothing of self-care. Needless to say, this routine is exhausting for both parents and kids. Not making these daily treks frees up a good deal of time for moms like M. to “learn more about my son, try to get some progress [avanços] that the routine doesn’t permit.” “Progress” here refers to child development. Less running around means more energy for her and her son, which can be spent working with him on eating solid foods, practicing using his walker, and stimulating his vision and hearing.
M. has been fortunate to receive “donations” from various people concerned with her and her son’s wellbeing. For this reason, her home is not lacking any basic necessities. (Although she confessed that she misses fast food, which is her weakness, and she also misses being able to see her crush.)
The COVID-19 pandemic in Brazil is expected to peak sometime in June. Despite the President’s failure to apprehend the gravity of the situation and act appropriately, quarantine measures in cities and states will be the reality for a good while longer. Digital ethnography will be of key importance as we continue to track the impacts of the virus and people’s responses to it, but also key is recognizing the multiple ways our interlocutors are already, and have long been, occupying digital worlds to stay informed and stick together in the face of uncertainty.