0227/2025 - The dramaturgy of a health emergency: Women’s lived experiences of the Zika epidemic in Brazil
A dramaturgia de uma emergência sanitária: as temporalidades vividas por mulheres na epidemia de zika no Brasil
Autor:
• Debora Diniz - Diniz, D - <d.diniz.debora@gmail.com>ORCID: https://orcid.org/0000-0001-6987-2569
Coautor(es):
• Luciana Stoimenoff Brito - Brito, LS - <l.brito@anis.org.br, luciana.sb@gmail.com>ORCID: https://orcid.org/0000-0001-8752-2386
• Arbel Griner - Griner, A - <agriner@princeton.edu; arbelgriner@gmail.com>
ORCID: https://orcid.org/0000-0001-7641-3686
• Patricia Kingori - Kingori, P - <patricia.kingori@ethox.ox.ac.uk>
ORCID: https://orcid.org/0000-0001-5420-2183
Resumo:
The official calendar of a health emergency has a direct impact on affected populations, particularly at the times of beginning, peak, end, and after the end. According to the World Health Organization, the Zika virus epidemic was a public health emergency between February and November 2016. The disease is now classified as an endemic arbovirus in several countries in the Global South. In this article, we analyze the chronology of the epidemic for three women affected by Zika in Alagoas, Brazil, who became pregnant at the beginning of the health emergency and whose children died between two and four years after the end of the epidemic. Our focus on the lived experience of these three women complexifies the linear dramaturgy of time in health emergencies. We aim to demonstrate how the health emergency calendar is an artifact that shapes political subjectivities, but also how it simplifies the lived experience of affected women, particularly in the times after the end.Palavras-chave:
Zika epidemic; health emergencies; women; temporalities; Brazil.Abstract:
O calendário oficial de uma emergência sanitária impacta diretamente as populações afetadas, em particular os marcos temporais de início, pico e fim. Segundo a Organização Mundial de Saúde, a epidemia do vírus zika foi uma emergência de saúde pública entre fevereiro e novembro de 2016, cujo fim resultou na classificação da doença como uma arbovirose endêmica. Neste artigo, analisamos a cronologia da epidemia para três mulheres afetadas pelo zika em Alagoas, Brasil, cuja gravidez ocorreu no tempo do início da emergência sanitária e cujos filhos faleceram entre dois e quatro anos após o decreto de fim da epidemia. O enfoque na experiência vivida das três mulheres complexifica a dramaturgia linear do tempo nas emergências sanitárias. Esperamos demonstrar como o calendário epidêmico é um artefato para a construção de subjetividades políticas, mas não conforma a experiência vivida das mulheres, em particular o vivido depois do decreto de fim de uma emergência sanitária.Keywords:
epidemia zika; emergências sanitárias; mulheres; temporalidades; Brasil.Conteúdo:
Introduction
In February 2016, the Zika virus was announced as a global health emergency for women of reproductive age. The emergency was declared by the World Health Organization (WHO) and attention was focused on women from a region poorly known on the international scene –northeastern Brazil, a vast territory where the country was formed by sugar plantations and the enslavement of people of African and Indigenous descent. It was there, where Brazil is most unequal, that the world epicenter of the Zika epidemic was made for nine months for the WHO, for eighteen months for the Brazilian Ministry of Health, and for a chronology embodied in the lived experience for the women infected by a tropical disease of everyday life, whose children were born with congenital Zika syndrome.
The Zika virus was unknown in Brazil, but it was added to the large and diverse population of local arboviruses. Dengue fever, yellow fever and chikungunya were also found in the lands of the Zika epicenter. In the second half of 2015, it seemed as if women were coming down with another virus or an allergy, as they had spots on their skin and a mild malaise. Some of them did not even report getting sick during pregnancy. They were experienced in tropical diseases and used to the mosquito as a common inhabitant of their daily lives.1 The surprise was the small-headed newborns, first described as fetal microcephaly and later as congenital Zika syndrome. A previously unknown risk to biomedicine, Zika is also transmitted vertically from the pregnant person to the fetus or through sexual relations with partners infected with the virus.2
A health emergency is narrated as having temporal milestones of beginning, peak and end. The chronology is imagined, as Charles Rosenberg described it, in a "dramaturgy" by those who have the authority to determine the timing of emergencies –in Brazil, the Ministry of Health, and, globally, the WHO.3 The time of onset is marked by the magnitude of its impact on the population, whether due to the disease's novelty, lethality, or contagiousness. The time of beginning also signals the urgency of the responses, whether to prevent the spread of the disease, to care for the sick or to seek solutions, such as research, vaccines or treatments. Authors voice some critics to the linear dramaturgy.4,5,6 There are health emergencies deemed to have started late, as in the case of Covid-19, while others have had both a delayed start and a controversial end, as in the case of Ebola.7,8,9
With the announcement of the end of the Zika epidemic by WHO, the dramaturgy has lost the imagery attraction of graphs with numbers of infected women and photographs of children with small heads. The bulletins monitoring the epidemiological situation of Zika infection or suspected cases of congenital Zika syndrome in Brazil have become rare: the data that used to be released weekly or monthly are now compiled every six months or almost annually. In epidemiological terms, Zika has become an endemic disease in a country full of arboviruses that afflict women of reproductive age.10,11
Between 2015 and 2023 more than 22,000 children were reported with congenital Zika virus syndrome, of which 3,742 were confirmed and 2,877 are still under investigation. The remaining cases are considered inconclusive, discarded or excluded.12 In 2024, 539 cases were reported as suspected, of which 12 had a positive laboratory diagnosis for Zika. In 2024, more than 11,000 women of reproductive age were reported as infected with the virus.13 This has created a time of silent continuity that biomedicine refers to as the reality of "neglected diseases".14 In addition, new health emergency calendars have been announced, and the Covid-19 pandemic has become the world's dramaturgy. Zika has become a disease of affliction for women from a distant territory or from an older past in global health calendars.
The Zika epidemic has conflicting temporalities for women and for health policies: a woman falling ill with Zika during pregnancy was a biopolitical event if the child was affected, particularly with signs of microcephaly at birth. Otherwise, the incident of a pregnant woman falling ill passed as irrelevant to the epidemic calendar, as seem to have been the cases of women infected by the Zika virus who suffered a miscarriage (or now repeated with the Oropouche virus), whose stories have disappeared from the chronology of the epidemic. Without the affected children, the women's illness was an unanswered incident in the epidemic calendar, demonstrating the complexity of telling the story of the Zika epidemic from the perspective of the time lived by the women and not just by that of the women intertwined with their affected children.
Our research team has conducted ethnographic fieldwork with hundreds of women, from a time situated before the official emergency began in Alagoas, and continuing beyond to the after the end of the official calendar of the Zika epidemic in Brazil.15 In this article, we present the temporalities experienced by three women whose children, born at the peak of the official calendar, died between two and four years after the end of the epidemic. We seek to understand how the temporalities of motherhood and politics are intertwined with the dramaturgy of emergencies. The experience of grief was used to anchor the end of the period of care.
Methodology and ethics
In 2016, even before the Brazilian government mapped the extent of the epidemic in Brazil, our research team traveled around the state of Alagoas in search of women and newborns who had been identified as affected by the Zika virus. We interviewed fifty-four women in their homes, and from this map we began national and local work to support the creation of family associations and published recommendations for public policies to protect women and children.16 We worked to build associations in the states of Alagoas and Rio de Janeiro, and since then we have maintained an ongoing relationship with the women and their families.
In Alagoas, the ethnographic work was combined with legal and policy advocacy –with the Associação Família de Anjos (AFAEAL), we work in partnership with the Judiciary for access to specialized or permanent health services, such as home care; for access to social benefits, such as income transfers and public housing. In Alagoas, thirty-two women moved to live as neighbors in housing complexes as part of the Minha Casa Minha Vida project (the result of the Association's political action), in a communal, political and affective experiment to create new zones of life during the covid-19 pandemic. Two of the three women in this article live in the same community.
AFAEAL has 278 registered families of children with congenital Zika syndrome. Of these, fourteen were born after the WHO declared the end of the epidemic and, of the total number of children in the Association, twelve have died. We have visited almost all of the families connected to the Association at their houses, participated in celebrations, public events and advocacy activities. We have built an extensive archive of interviews, documents, court cases and medical records, photographs and films. For this article, we conducted home visits and online chats via WhatsApp to explore the chronologies from the pregnancy to the deaths of the sons and daughter. The transcripts were reviewed by the three women, which led to new conversations. The interviews were conducted individually, and in two cases, the partners, who were also the parents of the deceased children, participated in some of the interactions. Their narratives were complementary to those of the women but were not used as analytical material for this article.
The ethnographic accompaniment was permeated by disruptive events, such as the children's prolonged hospitalizations, the Covid-19 pandemic or mourning the loss of a child. Our presence was characterized as accompaniment-witnessing.17,18 One of the authors of this article is a clinical psychologist, and in incidents suggesting mental distress, immediate care responses were offered, and the women were referred to long-term mental health care. We believe that the long-term bonds of trust and belonging between the research team and women allowed the accompaniment to be part of an authorized coexistence cultivated by both parties. As Ana Carla, one of the three women whose story is told in this article, said, "Your testimony is like a memory of what I experienced with Mikael and other women from the Association".
In qualitative research, anonymity of participants is a form of protection against stigma or adverse effects. We believe that care for intimacy and respect for self-image should guide ethnographic research and writing. However, as we have discussed in other contexts, not all ethnographic research assumes that anonymizing is protective; there are instances in which not naming disappears people's lived experience.19 In agreement with the women, this article presents them by name and image: we selected the photographs with them, and they were the first to review the text and with whom we discussed our arguments. The framing of the photographs was also agreed with each woman individually and with all of them collectively. Together we corrected facts, memories and perspectives. The authors are fully responsible for the arguments.
The research was reviewed and approved by the Human Sciences Research Ethics Committee of the University of Brasilia under the CAAE number: 63604016.4.0000.5540. Methodologically, we used long-term ethnographic research to follow the lived experiences of the three women from the time they fell ill with Zika to the present day. We listened to the women tell their own stories, and interaction in the form of scripted questions was rare. In these years of fieldwork, there have been different forms of informed consent and image authorization. For this article, written informed consents have been given for the conversations, article and photographs.
The three women are Ana Carla da Silva, Dayane Alves and Cleidiane Cavalcante. They are Northeasterns, African Brazilians, young, and have interrupted their studies or precarious paid jobs to take full care of their children. They were beneficiaries of income transfer programs and users of the Brazilian public health system. With the women, we agreed that a short chronicle would present the chronology from the time they became ill with Zika to the time after the death of their sons and daughter. The writing of the chronicle was participatory and is an experiment in feminist ethnography in which we write about the women and with them.20 In writing about the women’s experiences, we used the verb temporalities in which each of them described the mothering her deceased child. Some women present themselves in the present tense as "I am a mother", others as "I was a mother"; or "I have two children" or "I had a daughter and no longer have children". In the section "The calendars", we follow the intertwining of the epidemic dramaturgy with the lived time through the categories "Incidents", "Interpretations", "Responses" and "After the end". We return to the elements of the chronicle and add fragments from conversations about times and chronologies, indicating which woman voiced them.
The three women and the children
Ana Carla is married to Paulo Henrique and is the mother of Miquéias Henrique, 13, and Mikael, who died at the age of 6. She was 22 when she felt ill in the third month of her pregnancy. The red spots covered her body and burned in the heat of night. "I had spots on every corner of my skin, except on my head," a topography different from that of her son Mikael's congenital Zika syndrome: in her, the disease was quick and superficial on the body; in him, it was permanent and profound, his brain, reduced “to a blade”, stained white. Because of the spots on her skin, Ana Carla went to the doctor twice, who prescribed an ointment for allergies and to treat what was diagnosed as scabies. The spots lasted three days. As the pregnancy progressed, the television news began to show children with small heads and stories of women getting sick with spots on their bodies. Zika was a new disease for a woman who was born and lived surrounded by mosquitoes in a rural settlement on the Northern coast of Alagoas. In the last of three ultrasounds she had when she was eight months pregnant, the doctor was silent as he positioned the machine on the fetus's head. Ana Carla and her husband do not know what the doctor saw. The report made no mention of the child's microcephaly. At birth, Mikael was immediately sent to the ICU. The health care team recommended that Ana Carla "not get attach to her son", because his chances of survival were remote. As long as he lived, Mikael was kept in intensive care at home or in the hospital, and the family rejected anyone who "gave their son time to live". The family keeps several objects of Mikael, but the cap he used when last hospitalized has a special meaning (“it still has his smell”). Ana Carla gave birth to Mikael on February 6, 2016, and buried him on February 5, 2022.
Dayane is the mother of Maria Cecília, 4, and Emerson, who died at the age of 2. She was 18 when her husband developed Zika in the third month of her pregnancy. With little information available, Dayane was told about the importance of using insect repellent during pregnancy but was unaware of the sexual transmission of the disease. She had no symptoms of Zika, and none of her prenatal ultrasounds showed any changes in fetal development. When Emerson was born, "he just had a small head". In the urban favela where she still lives, in Maceió, the capital of Alagoas, there have been no other cases of Zika or of other "special children", and Emerson generated a lot of curiosity in the community. After Emerson's death, Dayane became pregnant again during the Covid-19 pandemic, despite advice from her family and neighbors about the risk of a new child being affected by Zika or by the new virus. It was as if Emerson's Zika genesis was updated with each new pregnancy or public health emergency. Doctors did not offer answers to Dayane's concerns, saying they knew little about the effects of sexual transmission of Zika and how long it remained in the body. The uncertainty involving the new pregnancy made it difficult for Dayane to bond with her daughter after she gave birth and separated from her partner. Dayane is the only one of the three women who is a single mother and does not live in the housing complex, though she is still active in the WhatsApp group of the Association. She keeps Emerson's maternity clothes. Dayane gave birth to Emerson on December 8, 2016, and buried him on May 28, 2019.
Cleidiane is married to Eder and was the mother of Katlyn, who died when she was six. She has no other children and is trying to get pregnant. She was 19 when she fell ill in the first months of her pregnancy. She had red spots on her body when "did not even know I was pregnant", despite having a menstrual delay of more than three months. During an ultrasound, the doctor told her that "the little body didn't match the size of the brain", because the fetus' head was much smaller than expected for almost six months of pregnancy. At the same appointment where the baby was diagnosed with microcephaly, she also found out that the baby would be a girl. During her pregnancy, she was referred to a specialized rehabilitation center. The diagnosis saddened her, and she considered giving the baby up for adoption. Katlyn was born prematurely, so small that she "fit in a shoebox". Looking at the girl transformed the affection Cleidiane felt, "she was a piece of me. I would take great care of her, and I gave her a lot of love". Our first conversation with Cleidiane took place shortly after she gave birth, which left her too vulnerable to participate in the research. Her partner was then our main interlocutor. In subsequent conversations, she became the narrator of hers and Katlyn's story. For Cleidiane, her daughter’s death was the end of a cycle of love and care, which is why she insists on saying that "I would rather not dream about her"; "With death, there was an end, and I don't want to have any memories". Motherhood is an experience of the past, "I was once a mother, but today I don't have children". She keeps no material things of Katlyn’s, the pictures she took are with the father of the child. Cleidiane gave birth to Katlyn on February 21, 2016, and buried her on August 15, 2022.
The calendars
Incidents
In Rosenberg's dramaturgy, "the peculiar texture of any epidemic reflects the continuous interaction between incident, perception, interpretation and response".3 The spots on Ana Carla’s and Cleidiane's skin, a disease with a superficial and ordinary topography on their bodies, were incidents considered irrelevant by the health care services and were also ignored by the women once the symptoms disappeared. With the birth of the children with microcephaly and the biomedical interpretation of the causality of the vertical transmission, the incident gained a new perception.22 But if the incident, perception, and interpretation altered the timing of the beginning of the lived experience –the birth of the child becoming the causal event for the risks of Zika in pregnancy –such linear and retroactive chronology did not become the only interpretation the women use to situate their lived experience in time.
The timing of the epidemic coincided with the time the women’s illness from a historical perspective, but not with their lived experience. The three women fell ill in the first months of the epidemic, according to the WHO, or in the prologue of its beginning. It is only in retrospect that the women recognize themselves as "sick with Zika" at the time of the outbreak. For them, the beginning of the epidemic affliction was the ultrasound, as it was for Cleidiane, or the delivery, when they are described as mothers of a "special child". When causalities are reconstituted, calendars intertwine, and the bodies of women and children are interpreted by the science of Zika as a single subject for analysis.23
Even with the declaration of the global emergency that marked the time of the outbreak, there was a normalization of bodies already accustomed to being afflicted by mosquitoes or tropical diseases: they would be like ordinary incidents of life in that environmental, racial, and class geography. The three women were not diagnosed with Zika during pregnancy; Zika was a disease in the news, not imagined in their own bodies. They lived through the months of pregnancy during what has been described as the peak of the epidemic's dramaturgy in Brazil, and not even with ultrasound images suggesting fetal microcephaly, as was the case with Ana Carla and Cleidiane, was the Zika hypothesis considered by doctors.
A disquieting aesthetic tension existed between what the disease was in the women's bodies and what it manifested in the children's genesis: for the former, it was a rapid and acute topography; for the children, a permanent, chronic and deep scar. It was only with the overlapping of time for the construction of the newborn's "clinical history" that the ordinary illness of pregnancy was re-signified as Zika: the three women experienced their afflictions as nameless viruses, skin diseases, or pregnancy complications. It is the genesis of the child crossed by the "congenital Zika syndrome" that demarcates the creation of a continuous time for the three women: that of the domestic clinic of motherhood that allows the child to survive, indifferent to the uncertainties or pessimism of science.
Interpretations
The event caught by Ana Carla's husband, in which the doctor avoided showing Mikael's head on the ultrasound screen, suggests a discursive conflict that permeated the peak of the health emergency. Despite the excess of public circulation of images and narratives, in the clinical care offered to women there was a discursive containment –as if uncertainties of science about the effects of the Zika virus prevented tending to the common needs of women during pregnancy and puerperium. Ana Carla was kept apart from meeting Mikael until he was three days old and forbidden to breastfeed him; Dayane left the maternity hospital without any information about the implications of Emerson's microcephaly; Cleidiane experienced acute psychological distress after giving birth. In contrast to the public intensity of communication, to the three women, healthcare teams offered the suspension of words and of time to come. In a biographical novel about mothering a child with multiple disabilities and extreme dependency, Ada d'Adamo speaks of a rule of silence, that she describes as “the great exit”.24
When the numbers of maternal deaths from Covid-19 hit Brazil, Dayane was pregnant with her second child: her two pregnancies matched the calendars of the country's health emergencies. For Dayane, Zika time did not end with Emerson's death, as she felt uncertain about the temporality of the virus through sexual transmission. In addition to the risks Covid-19 posed to pregnant women, Dayane rejected any certainties of time biomedicine offered. The doctors constrained the period of re-infection to a "six-month" window since her husband became ill, but she did not believe a temporal precision could apply to a virus that had been until recently unknown to science.
Ana Carla offered a category to explain how silence, time and uncertainty intersected around Mikael's birth and in relation with the healthcare teams. In the Association in Alagoas, Mikael was the newborn with the most severe congenital Zika syndrome (and the first child to have free public access to home care services and public housing): "People gave my son time to live". "Giving time" meant calculating survival, estimating imminent death, which would require distancing Ana Carla from her son, preventing her from breastfeeding, for example. "Give him time" came to mean Mikael's prognosis of a short life, which is why Ana Carla would hear from neighbors or family members not to “create attachment" to the child. The advice was like a protective order against imminent grief.
"Creating attachment" is an expression known to Brazilian culture of affection and care. Ana Carla reminded us of how it is used to describe the relationship between humans and non-humans: the life cycle of a domestic animal is weighed against the decision to adopt it into a family, since a shorter life span than humans could lead to a projection of suffering once the pet dies. By "giving Mikael time", the health care team kept quiet about his condition or even made it difficult for Ana Carla and her husband to get close to the child. "I had to explain to them that having a child with special needs is not the end of the world. It would have been easy to just say: 'Your son is special'. I wanted them to stop counting Mikael's days. They should stop giving him time to live. What were they afraid of? That I would abandon him? Or that I would suffer?"
Ana Carla refused the emptiness of time and the silence that the health care teams imposed on her son –so she took on intensive care outside the control of the hospital. With the AFAEAL association, Ana Carla began the dispute about who would take care of Mikael and where –if at home or in a hospital intensive care unit. With other women, a domestic science for Zika was set in motion, giving shape to “the clinic of motherhood”, and to an intense exchange of information through online WhatsApp groups. The course of congenital Zika syndrome was unknown to science, and the women were pioneers in identifying, documenting and sharing the first convulsions, heart failures, or tube-feeding techniques. The search for the health care services only took place after the domestic science had been verified, a knowledge produced by each woman with her child in the daily practice of the clinic of motherhood.
The three women recall different situations in which the medical professionals treated their children as “disillusioned” by health care teams with the future or having no chance of survival, and the mothers were the ones “to save” them, granting them back time to live. Ana Carla lists three situations in which the home care staff left her son to die, and where she was the one who insisted on taking care of him. The resuscitation techniques she used to save Mikael were learned from virtual classes on YouTube or from other women, through WhatsApp groups. Amidst such continuous time of caring, living in a communal space allowed for a time and a space for survival to unfold, especially when life with Zika intersected with the Covid-19 pandemic. Understanding the importance of communal living, the Association demanded priority access to families affected by Zika to housing offered by Minha Casa, Minha Vida, a project funded by the Brazilian federal government. Thirty-four women affected by Zika received free housing and are now neighbors in the same urban housing complex. Receiving the benefit binds the beneficiary to living in the house and to not selling it for at least ten years.
The house was already a space of confinement before the Covid-19 pandemic imposed social distancing rules. Limited accessibility for wheelchair users is a reality in peripheral urban neighborhoods in Brazil, and it is no different in the community housing buildings where the women now live. Even though the houses are located on the ground floor to facilitate the circulation of wheelchair users or of arm-carried children, a new geography of care was put into practice with the Covid-19 pandemic. The three children's so-called "pre-existing respiratory condition," common in children with congenital Zika syndrome, required reducing the living space to the bedroom of the house, in order to avoid the risk of Covid-19 infection.
Ana Carla, Dayane and Cleidiane described the Covid-19 months as a time of defiance to hospitalization. Every child’s respiratory complication, a recurrent event linked to the syndrome itself and to the dependency on the medical devices, was assumed by the health care teams to be a potential Covid-19 infection, even though no tests were performed to confirm the disease. The children were hospitalized only when in severe clinical conditions, as the women anticipated that without the domestic clinic of motherhood, the children's survival could be shortened: "It seemed that Mikael had no right to a hospital bed during the pandemic," explained Ana Carla.
Answers
It is as political subject that the three women use the official chronology of the epidemic to demand the right to care for the kids: they are victims of Zika, and their children are "special". The beginning and the peak of the health emergency coincided with the pregnancy and the birth of the children. In the political sphere, women dispute the chronology of the end –the end, declared by national and global health policies, is not the end of lived experience nor of life needs. On the contrary. The lived experience of mothering a "special child" extends to "after the end" of the official calendar.
If the language of "special child" is considered outdated by the social movements of people with disabilities in Brazil, this is not the case for the women of the Association. "Special" is not a qualifier for the child, it is part of their ontology. The compound "special because of Zika" is the inscription of the genesis and permanence of the epidemic's effects on women and children. This is how the official calendar is strategically adopted by the women for political advocacy –the beginning of the emergency is a temporality where the dramaturgy of the health emergency and of lived experience meet, but the end is a contested mark.
The women adopt the epidemic calendar to situate the life needs of their special children: the “special” condition was caused by Zika. The epidemic calendar operated as a frame of power that allowed the negotiation of women's political subjectivity. "Special doesn't mean better than anyone else, much less privileged. It's just that she's different, and Zika caused it," Cleidiane explained. Mothering a special child positions women on the epidemic calendar but also brings them closer to other women with atypical motherhood, that is, with different times and marks that set a calendar of care in a disablist social order.25
For all three women, it was the domestic clinic of motherhood that kept their children alive. The hospital was described as a place where "special children are rejected", and where women are alienated from care. As they recounted the deaths of their children, the three women told of their reluctance to hospitalizations, and explained that a "medical error" for Dayane, a "medical negligence" for Cleidiane, and "neglect" for Ana Carla accelerated the deaths of their kids. For them, the children did not die within a natural life cycle imposed by the congenital Zika syndrome; no natural "end" was imagined under the domestic clinic of motherhood. According to the mothers, Mikael, Emerson and Katlyn died in an accelerated time because they were "special children" in the hospital.
The end of the epidemic calendar was a time for the constitution of the political subjectivity of women –the "mothers of Zika", as they are called– and for the creation of dozens of women's associations dedicated to defending rights. The Alagoas Association is one of the most active in Brazil and was a leading voice both in the process of including Zika-affected children in the main cash transfer benefit program for the extremely poor in Brazil (Continuous Cash Benefit, BPC), and in the drafting of a federal law for financial reparations for children affected by the Zika epidemic. The three children were beneficiaries of the BPC, which provides a minimum monthly wage (approximately U$300). For the women, enrolling the children in the BPC program meant not engaging in paid work, in order to ensure the family income would not go above the poverty line. The intensive and continuous care the children required also kept the mothers away from the labor market. When the children died, the benefit was suspended, impacting families and neglecting the women, whose paid work plans had been suspended by years of caregiving.
In 2016, at the beginning and peak of the epidemic, conversations about financial reparations for the impact of Zika on women's life plans and children's health were not tolerated: compensation made Ana Carla feel that "it seems like I'm rejecting my child”. It was only “after the end” of the epidemic, with the actions of different associations in the country and the political projection of women, that the reparation law for Zika children started to be discussed. The restrictive interpretation that the cash transfer is exclusively for the disabled child and not also for the caregiver has placed women in an even more precarious situation: in addition to families’ income dropping significantly, women lack the qualification and experience expected in the labor market. The discussion about the lack of protection experienced by caregivers of children with disabilities or people affected by health emergencies is on the agenda of political negotiations in Brazil, with the Association playing a strong role.
Bill 6064/23 was vetoed by the federal government and sent back to the Senate. The bill considers affected children as the subjects of the right to reparations, excluding women. Ana Carla, Cleidiane and Dayane consider reparations for children fair; they do not see a separation between what happened to the children and what happened to them. However, they contest the assumption that the child must be alive in order to be entitled to reparations. The value of the reparation is estimated in U$10,000 for each child, which is a significant amount for the families.
Recognizing the right to reparations for Mikael, Emerson and Katlyn is more than a financial claim made about the impact of a preventable epidemic on their children; it is above all a political identification of the three women in the historical moment of the Zika epidemic in Brazil. It is also about Zika-affected women and their lived experiences: “reparations”, they say, "are about what happened to us and our children, and it doesn't matter when they were born or died”. In other words, there is a demand that the effects of the epidemic calendar remain in place, even for women whose children have already died, on whom an undeniable "end" could be projected, or for children born after the end of the reparation calendar as prescribed in bill 6064/23.
After the end
Ethnographic accompaniment has allowed us to problematize how the epidemic calendar shapes political subjectivities for political advocacy or financial reparations, but also how lived experience of motherhood and mourning extrapolates the linearity of emergencies dramaturgy. Dramaturgy times are political events and go beyond the epidemiological descriptors of risks and urgencies of the biology of diseases or of the population's need for care. In the case of the Zika epidemic, the emergency’s official calendar did not begin when the first pregnant woman fell ill with an unknown arbovirus in Brazil; when the first newborn with microcephaly was born; or when science published a paper demonstrating the vertical transmission of Zika. It was only after the emergency calendar was declared that the time of biopolitics and the time experienced by the first communities and people affected could be juxtaposed. In other words, it is with the official calendar that people come to exist politically, as subjects with needs legitimized and recognized by the political power.
Dramaturgy is a narrative framework in which different elements are combined to delineate the short, long, interrupted, or cyclical periods of a health emergency. The dramaturgy signals that a disease has reached the biopolitical scale of a pandemic or epidemic, that it has become endemic, or that it has been eradicated. Once placed on a dramatic narrative, a disease moves financial resources, academic research and news; national and global public health policies; affections and behaviors such as mourning, fear, xenophobia, or solidarity. However, there is a growing body of analysis that suggests that the dramaturgy framework is inadequate for understanding the impact of health emergencies on different countries, communities, or affected people.
The subjectivities that emerge from lived times are not linear as the framework of dramaturgy of health emergencies imagines. In the case of the Zika epidemic in Brazil, women's times oscillate between dialoguing with the official chronology, ignoring it, or even rejecting it. With this study, we hope to have contributed to a growing research agenda on temporalities and health emergencies, particularly on the meanings experienced "after the end" by affected people and communities.
Acknowledgements:
This work was supported by the Wellcome Trust, 225238/Z/22/Z.
Debora Diniz is grateful for her stay at the University of Tokyo, especially to Professor Akinori Hamada.
Rights Retention Statement:
This research was funded in whole or in part by The Wellcome Trust, 225238/Z/22/Z. For the purpose of Open Access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript (AAM) version arising from this submission.
References
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In February 2016, the Zika virus was announced as a global health emergency for women of reproductive age. The emergency was declared by the World Health Organization (WHO) and attention was focused on women from a region poorly known on the international scene –northeastern Brazil, a vast territory where the country was formed by sugar plantations and the enslavement of people of African and Indigenous descent. It was there, where Brazil is most unequal, that the world epicenter of the Zika epidemic was made for nine months for the WHO, for eighteen months for the Brazilian Ministry of Health, and for a chronology embodied in the lived experience for the women infected by a tropical disease of everyday life, whose children were born with congenital Zika syndrome.
The Zika virus was unknown in Brazil, but it was added to the large and diverse population of local arboviruses. Dengue fever, yellow fever and chikungunya were also found in the lands of the Zika epicenter. In the second half of 2015, it seemed as if women were coming down with another virus or an allergy, as they had spots on their skin and a mild malaise. Some of them did not even report getting sick during pregnancy. They were experienced in tropical diseases and used to the mosquito as a common inhabitant of their daily lives.1 The surprise was the small-headed newborns, first described as fetal microcephaly and later as congenital Zika syndrome. A previously unknown risk to biomedicine, Zika is also transmitted vertically from the pregnant person to the fetus or through sexual relations with partners infected with the virus.2
A health emergency is narrated as having temporal milestones of beginning, peak and end. The chronology is imagined, as Charles Rosenberg described it, in a "dramaturgy" by those who have the authority to determine the timing of emergencies –in Brazil, the Ministry of Health, and, globally, the WHO.3 The time of onset is marked by the magnitude of its impact on the population, whether due to the disease's novelty, lethality, or contagiousness. The time of beginning also signals the urgency of the responses, whether to prevent the spread of the disease, to care for the sick or to seek solutions, such as research, vaccines or treatments. Authors voice some critics to the linear dramaturgy.4,5,6 There are health emergencies deemed to have started late, as in the case of Covid-19, while others have had both a delayed start and a controversial end, as in the case of Ebola.7,8,9
With the announcement of the end of the Zika epidemic by WHO, the dramaturgy has lost the imagery attraction of graphs with numbers of infected women and photographs of children with small heads. The bulletins monitoring the epidemiological situation of Zika infection or suspected cases of congenital Zika syndrome in Brazil have become rare: the data that used to be released weekly or monthly are now compiled every six months or almost annually. In epidemiological terms, Zika has become an endemic disease in a country full of arboviruses that afflict women of reproductive age.10,11
Between 2015 and 2023 more than 22,000 children were reported with congenital Zika virus syndrome, of which 3,742 were confirmed and 2,877 are still under investigation. The remaining cases are considered inconclusive, discarded or excluded.12 In 2024, 539 cases were reported as suspected, of which 12 had a positive laboratory diagnosis for Zika. In 2024, more than 11,000 women of reproductive age were reported as infected with the virus.13 This has created a time of silent continuity that biomedicine refers to as the reality of "neglected diseases".14 In addition, new health emergency calendars have been announced, and the Covid-19 pandemic has become the world's dramaturgy. Zika has become a disease of affliction for women from a distant territory or from an older past in global health calendars.
The Zika epidemic has conflicting temporalities for women and for health policies: a woman falling ill with Zika during pregnancy was a biopolitical event if the child was affected, particularly with signs of microcephaly at birth. Otherwise, the incident of a pregnant woman falling ill passed as irrelevant to the epidemic calendar, as seem to have been the cases of women infected by the Zika virus who suffered a miscarriage (or now repeated with the Oropouche virus), whose stories have disappeared from the chronology of the epidemic. Without the affected children, the women's illness was an unanswered incident in the epidemic calendar, demonstrating the complexity of telling the story of the Zika epidemic from the perspective of the time lived by the women and not just by that of the women intertwined with their affected children.
Our research team has conducted ethnographic fieldwork with hundreds of women, from a time situated before the official emergency began in Alagoas, and continuing beyond to the after the end of the official calendar of the Zika epidemic in Brazil.15 In this article, we present the temporalities experienced by three women whose children, born at the peak of the official calendar, died between two and four years after the end of the epidemic. We seek to understand how the temporalities of motherhood and politics are intertwined with the dramaturgy of emergencies. The experience of grief was used to anchor the end of the period of care.
Methodology and ethics
In 2016, even before the Brazilian government mapped the extent of the epidemic in Brazil, our research team traveled around the state of Alagoas in search of women and newborns who had been identified as affected by the Zika virus. We interviewed fifty-four women in their homes, and from this map we began national and local work to support the creation of family associations and published recommendations for public policies to protect women and children.16 We worked to build associations in the states of Alagoas and Rio de Janeiro, and since then we have maintained an ongoing relationship with the women and their families.
In Alagoas, the ethnographic work was combined with legal and policy advocacy –with the Associação Família de Anjos (AFAEAL), we work in partnership with the Judiciary for access to specialized or permanent health services, such as home care; for access to social benefits, such as income transfers and public housing. In Alagoas, thirty-two women moved to live as neighbors in housing complexes as part of the Minha Casa Minha Vida project (the result of the Association's political action), in a communal, political and affective experiment to create new zones of life during the covid-19 pandemic. Two of the three women in this article live in the same community.
AFAEAL has 278 registered families of children with congenital Zika syndrome. Of these, fourteen were born after the WHO declared the end of the epidemic and, of the total number of children in the Association, twelve have died. We have visited almost all of the families connected to the Association at their houses, participated in celebrations, public events and advocacy activities. We have built an extensive archive of interviews, documents, court cases and medical records, photographs and films. For this article, we conducted home visits and online chats via WhatsApp to explore the chronologies from the pregnancy to the deaths of the sons and daughter. The transcripts were reviewed by the three women, which led to new conversations. The interviews were conducted individually, and in two cases, the partners, who were also the parents of the deceased children, participated in some of the interactions. Their narratives were complementary to those of the women but were not used as analytical material for this article.
The ethnographic accompaniment was permeated by disruptive events, such as the children's prolonged hospitalizations, the Covid-19 pandemic or mourning the loss of a child. Our presence was characterized as accompaniment-witnessing.17,18 One of the authors of this article is a clinical psychologist, and in incidents suggesting mental distress, immediate care responses were offered, and the women were referred to long-term mental health care. We believe that the long-term bonds of trust and belonging between the research team and women allowed the accompaniment to be part of an authorized coexistence cultivated by both parties. As Ana Carla, one of the three women whose story is told in this article, said, "Your testimony is like a memory of what I experienced with Mikael and other women from the Association".
In qualitative research, anonymity of participants is a form of protection against stigma or adverse effects. We believe that care for intimacy and respect for self-image should guide ethnographic research and writing. However, as we have discussed in other contexts, not all ethnographic research assumes that anonymizing is protective; there are instances in which not naming disappears people's lived experience.19 In agreement with the women, this article presents them by name and image: we selected the photographs with them, and they were the first to review the text and with whom we discussed our arguments. The framing of the photographs was also agreed with each woman individually and with all of them collectively. Together we corrected facts, memories and perspectives. The authors are fully responsible for the arguments.
The research was reviewed and approved by the Human Sciences Research Ethics Committee of the University of Brasilia under the CAAE number: 63604016.4.0000.5540. Methodologically, we used long-term ethnographic research to follow the lived experiences of the three women from the time they fell ill with Zika to the present day. We listened to the women tell their own stories, and interaction in the form of scripted questions was rare. In these years of fieldwork, there have been different forms of informed consent and image authorization. For this article, written informed consents have been given for the conversations, article and photographs.
The three women are Ana Carla da Silva, Dayane Alves and Cleidiane Cavalcante. They are Northeasterns, African Brazilians, young, and have interrupted their studies or precarious paid jobs to take full care of their children. They were beneficiaries of income transfer programs and users of the Brazilian public health system. With the women, we agreed that a short chronicle would present the chronology from the time they became ill with Zika to the time after the death of their sons and daughter. The writing of the chronicle was participatory and is an experiment in feminist ethnography in which we write about the women and with them.20 In writing about the women’s experiences, we used the verb temporalities in which each of them described the mothering her deceased child. Some women present themselves in the present tense as "I am a mother", others as "I was a mother"; or "I have two children" or "I had a daughter and no longer have children". In the section "The calendars", we follow the intertwining of the epidemic dramaturgy with the lived time through the categories "Incidents", "Interpretations", "Responses" and "After the end". We return to the elements of the chronicle and add fragments from conversations about times and chronologies, indicating which woman voiced them.
The three women and the children
Ana Carla is married to Paulo Henrique and is the mother of Miquéias Henrique, 13, and Mikael, who died at the age of 6. She was 22 when she felt ill in the third month of her pregnancy. The red spots covered her body and burned in the heat of night. "I had spots on every corner of my skin, except on my head," a topography different from that of her son Mikael's congenital Zika syndrome: in her, the disease was quick and superficial on the body; in him, it was permanent and profound, his brain, reduced “to a blade”, stained white. Because of the spots on her skin, Ana Carla went to the doctor twice, who prescribed an ointment for allergies and to treat what was diagnosed as scabies. The spots lasted three days. As the pregnancy progressed, the television news began to show children with small heads and stories of women getting sick with spots on their bodies. Zika was a new disease for a woman who was born and lived surrounded by mosquitoes in a rural settlement on the Northern coast of Alagoas. In the last of three ultrasounds she had when she was eight months pregnant, the doctor was silent as he positioned the machine on the fetus's head. Ana Carla and her husband do not know what the doctor saw. The report made no mention of the child's microcephaly. At birth, Mikael was immediately sent to the ICU. The health care team recommended that Ana Carla "not get attach to her son", because his chances of survival were remote. As long as he lived, Mikael was kept in intensive care at home or in the hospital, and the family rejected anyone who "gave their son time to live". The family keeps several objects of Mikael, but the cap he used when last hospitalized has a special meaning (“it still has his smell”). Ana Carla gave birth to Mikael on February 6, 2016, and buried him on February 5, 2022.
Dayane is the mother of Maria Cecília, 4, and Emerson, who died at the age of 2. She was 18 when her husband developed Zika in the third month of her pregnancy. With little information available, Dayane was told about the importance of using insect repellent during pregnancy but was unaware of the sexual transmission of the disease. She had no symptoms of Zika, and none of her prenatal ultrasounds showed any changes in fetal development. When Emerson was born, "he just had a small head". In the urban favela where she still lives, in Maceió, the capital of Alagoas, there have been no other cases of Zika or of other "special children", and Emerson generated a lot of curiosity in the community. After Emerson's death, Dayane became pregnant again during the Covid-19 pandemic, despite advice from her family and neighbors about the risk of a new child being affected by Zika or by the new virus. It was as if Emerson's Zika genesis was updated with each new pregnancy or public health emergency. Doctors did not offer answers to Dayane's concerns, saying they knew little about the effects of sexual transmission of Zika and how long it remained in the body. The uncertainty involving the new pregnancy made it difficult for Dayane to bond with her daughter after she gave birth and separated from her partner. Dayane is the only one of the three women who is a single mother and does not live in the housing complex, though she is still active in the WhatsApp group of the Association. She keeps Emerson's maternity clothes. Dayane gave birth to Emerson on December 8, 2016, and buried him on May 28, 2019.
Cleidiane is married to Eder and was the mother of Katlyn, who died when she was six. She has no other children and is trying to get pregnant. She was 19 when she fell ill in the first months of her pregnancy. She had red spots on her body when "did not even know I was pregnant", despite having a menstrual delay of more than three months. During an ultrasound, the doctor told her that "the little body didn't match the size of the brain", because the fetus' head was much smaller than expected for almost six months of pregnancy. At the same appointment where the baby was diagnosed with microcephaly, she also found out that the baby would be a girl. During her pregnancy, she was referred to a specialized rehabilitation center. The diagnosis saddened her, and she considered giving the baby up for adoption. Katlyn was born prematurely, so small that she "fit in a shoebox". Looking at the girl transformed the affection Cleidiane felt, "she was a piece of me. I would take great care of her, and I gave her a lot of love". Our first conversation with Cleidiane took place shortly after she gave birth, which left her too vulnerable to participate in the research. Her partner was then our main interlocutor. In subsequent conversations, she became the narrator of hers and Katlyn's story. For Cleidiane, her daughter’s death was the end of a cycle of love and care, which is why she insists on saying that "I would rather not dream about her"; "With death, there was an end, and I don't want to have any memories". Motherhood is an experience of the past, "I was once a mother, but today I don't have children". She keeps no material things of Katlyn’s, the pictures she took are with the father of the child. Cleidiane gave birth to Katlyn on February 21, 2016, and buried her on August 15, 2022.
The calendars
Incidents
In Rosenberg's dramaturgy, "the peculiar texture of any epidemic reflects the continuous interaction between incident, perception, interpretation and response".3 The spots on Ana Carla’s and Cleidiane's skin, a disease with a superficial and ordinary topography on their bodies, were incidents considered irrelevant by the health care services and were also ignored by the women once the symptoms disappeared. With the birth of the children with microcephaly and the biomedical interpretation of the causality of the vertical transmission, the incident gained a new perception.22 But if the incident, perception, and interpretation altered the timing of the beginning of the lived experience –the birth of the child becoming the causal event for the risks of Zika in pregnancy –such linear and retroactive chronology did not become the only interpretation the women use to situate their lived experience in time.
The timing of the epidemic coincided with the time the women’s illness from a historical perspective, but not with their lived experience. The three women fell ill in the first months of the epidemic, according to the WHO, or in the prologue of its beginning. It is only in retrospect that the women recognize themselves as "sick with Zika" at the time of the outbreak. For them, the beginning of the epidemic affliction was the ultrasound, as it was for Cleidiane, or the delivery, when they are described as mothers of a "special child". When causalities are reconstituted, calendars intertwine, and the bodies of women and children are interpreted by the science of Zika as a single subject for analysis.23
Even with the declaration of the global emergency that marked the time of the outbreak, there was a normalization of bodies already accustomed to being afflicted by mosquitoes or tropical diseases: they would be like ordinary incidents of life in that environmental, racial, and class geography. The three women were not diagnosed with Zika during pregnancy; Zika was a disease in the news, not imagined in their own bodies. They lived through the months of pregnancy during what has been described as the peak of the epidemic's dramaturgy in Brazil, and not even with ultrasound images suggesting fetal microcephaly, as was the case with Ana Carla and Cleidiane, was the Zika hypothesis considered by doctors.
A disquieting aesthetic tension existed between what the disease was in the women's bodies and what it manifested in the children's genesis: for the former, it was a rapid and acute topography; for the children, a permanent, chronic and deep scar. It was only with the overlapping of time for the construction of the newborn's "clinical history" that the ordinary illness of pregnancy was re-signified as Zika: the three women experienced their afflictions as nameless viruses, skin diseases, or pregnancy complications. It is the genesis of the child crossed by the "congenital Zika syndrome" that demarcates the creation of a continuous time for the three women: that of the domestic clinic of motherhood that allows the child to survive, indifferent to the uncertainties or pessimism of science.
Interpretations
The event caught by Ana Carla's husband, in which the doctor avoided showing Mikael's head on the ultrasound screen, suggests a discursive conflict that permeated the peak of the health emergency. Despite the excess of public circulation of images and narratives, in the clinical care offered to women there was a discursive containment –as if uncertainties of science about the effects of the Zika virus prevented tending to the common needs of women during pregnancy and puerperium. Ana Carla was kept apart from meeting Mikael until he was three days old and forbidden to breastfeed him; Dayane left the maternity hospital without any information about the implications of Emerson's microcephaly; Cleidiane experienced acute psychological distress after giving birth. In contrast to the public intensity of communication, to the three women, healthcare teams offered the suspension of words and of time to come. In a biographical novel about mothering a child with multiple disabilities and extreme dependency, Ada d'Adamo speaks of a rule of silence, that she describes as “the great exit”.24
When the numbers of maternal deaths from Covid-19 hit Brazil, Dayane was pregnant with her second child: her two pregnancies matched the calendars of the country's health emergencies. For Dayane, Zika time did not end with Emerson's death, as she felt uncertain about the temporality of the virus through sexual transmission. In addition to the risks Covid-19 posed to pregnant women, Dayane rejected any certainties of time biomedicine offered. The doctors constrained the period of re-infection to a "six-month" window since her husband became ill, but she did not believe a temporal precision could apply to a virus that had been until recently unknown to science.
Ana Carla offered a category to explain how silence, time and uncertainty intersected around Mikael's birth and in relation with the healthcare teams. In the Association in Alagoas, Mikael was the newborn with the most severe congenital Zika syndrome (and the first child to have free public access to home care services and public housing): "People gave my son time to live". "Giving time" meant calculating survival, estimating imminent death, which would require distancing Ana Carla from her son, preventing her from breastfeeding, for example. "Give him time" came to mean Mikael's prognosis of a short life, which is why Ana Carla would hear from neighbors or family members not to “create attachment" to the child. The advice was like a protective order against imminent grief.
"Creating attachment" is an expression known to Brazilian culture of affection and care. Ana Carla reminded us of how it is used to describe the relationship between humans and non-humans: the life cycle of a domestic animal is weighed against the decision to adopt it into a family, since a shorter life span than humans could lead to a projection of suffering once the pet dies. By "giving Mikael time", the health care team kept quiet about his condition or even made it difficult for Ana Carla and her husband to get close to the child. "I had to explain to them that having a child with special needs is not the end of the world. It would have been easy to just say: 'Your son is special'. I wanted them to stop counting Mikael's days. They should stop giving him time to live. What were they afraid of? That I would abandon him? Or that I would suffer?"
Ana Carla refused the emptiness of time and the silence that the health care teams imposed on her son –so she took on intensive care outside the control of the hospital. With the AFAEAL association, Ana Carla began the dispute about who would take care of Mikael and where –if at home or in a hospital intensive care unit. With other women, a domestic science for Zika was set in motion, giving shape to “the clinic of motherhood”, and to an intense exchange of information through online WhatsApp groups. The course of congenital Zika syndrome was unknown to science, and the women were pioneers in identifying, documenting and sharing the first convulsions, heart failures, or tube-feeding techniques. The search for the health care services only took place after the domestic science had been verified, a knowledge produced by each woman with her child in the daily practice of the clinic of motherhood.
The three women recall different situations in which the medical professionals treated their children as “disillusioned” by health care teams with the future or having no chance of survival, and the mothers were the ones “to save” them, granting them back time to live. Ana Carla lists three situations in which the home care staff left her son to die, and where she was the one who insisted on taking care of him. The resuscitation techniques she used to save Mikael were learned from virtual classes on YouTube or from other women, through WhatsApp groups. Amidst such continuous time of caring, living in a communal space allowed for a time and a space for survival to unfold, especially when life with Zika intersected with the Covid-19 pandemic. Understanding the importance of communal living, the Association demanded priority access to families affected by Zika to housing offered by Minha Casa, Minha Vida, a project funded by the Brazilian federal government. Thirty-four women affected by Zika received free housing and are now neighbors in the same urban housing complex. Receiving the benefit binds the beneficiary to living in the house and to not selling it for at least ten years.
The house was already a space of confinement before the Covid-19 pandemic imposed social distancing rules. Limited accessibility for wheelchair users is a reality in peripheral urban neighborhoods in Brazil, and it is no different in the community housing buildings where the women now live. Even though the houses are located on the ground floor to facilitate the circulation of wheelchair users or of arm-carried children, a new geography of care was put into practice with the Covid-19 pandemic. The three children's so-called "pre-existing respiratory condition," common in children with congenital Zika syndrome, required reducing the living space to the bedroom of the house, in order to avoid the risk of Covid-19 infection.
Ana Carla, Dayane and Cleidiane described the Covid-19 months as a time of defiance to hospitalization. Every child’s respiratory complication, a recurrent event linked to the syndrome itself and to the dependency on the medical devices, was assumed by the health care teams to be a potential Covid-19 infection, even though no tests were performed to confirm the disease. The children were hospitalized only when in severe clinical conditions, as the women anticipated that without the domestic clinic of motherhood, the children's survival could be shortened: "It seemed that Mikael had no right to a hospital bed during the pandemic," explained Ana Carla.
Answers
It is as political subject that the three women use the official chronology of the epidemic to demand the right to care for the kids: they are victims of Zika, and their children are "special". The beginning and the peak of the health emergency coincided with the pregnancy and the birth of the children. In the political sphere, women dispute the chronology of the end –the end, declared by national and global health policies, is not the end of lived experience nor of life needs. On the contrary. The lived experience of mothering a "special child" extends to "after the end" of the official calendar.
If the language of "special child" is considered outdated by the social movements of people with disabilities in Brazil, this is not the case for the women of the Association. "Special" is not a qualifier for the child, it is part of their ontology. The compound "special because of Zika" is the inscription of the genesis and permanence of the epidemic's effects on women and children. This is how the official calendar is strategically adopted by the women for political advocacy –the beginning of the emergency is a temporality where the dramaturgy of the health emergency and of lived experience meet, but the end is a contested mark.
The women adopt the epidemic calendar to situate the life needs of their special children: the “special” condition was caused by Zika. The epidemic calendar operated as a frame of power that allowed the negotiation of women's political subjectivity. "Special doesn't mean better than anyone else, much less privileged. It's just that she's different, and Zika caused it," Cleidiane explained. Mothering a special child positions women on the epidemic calendar but also brings them closer to other women with atypical motherhood, that is, with different times and marks that set a calendar of care in a disablist social order.25
For all three women, it was the domestic clinic of motherhood that kept their children alive. The hospital was described as a place where "special children are rejected", and where women are alienated from care. As they recounted the deaths of their children, the three women told of their reluctance to hospitalizations, and explained that a "medical error" for Dayane, a "medical negligence" for Cleidiane, and "neglect" for Ana Carla accelerated the deaths of their kids. For them, the children did not die within a natural life cycle imposed by the congenital Zika syndrome; no natural "end" was imagined under the domestic clinic of motherhood. According to the mothers, Mikael, Emerson and Katlyn died in an accelerated time because they were "special children" in the hospital.
The end of the epidemic calendar was a time for the constitution of the political subjectivity of women –the "mothers of Zika", as they are called– and for the creation of dozens of women's associations dedicated to defending rights. The Alagoas Association is one of the most active in Brazil and was a leading voice both in the process of including Zika-affected children in the main cash transfer benefit program for the extremely poor in Brazil (Continuous Cash Benefit, BPC), and in the drafting of a federal law for financial reparations for children affected by the Zika epidemic. The three children were beneficiaries of the BPC, which provides a minimum monthly wage (approximately U$300). For the women, enrolling the children in the BPC program meant not engaging in paid work, in order to ensure the family income would not go above the poverty line. The intensive and continuous care the children required also kept the mothers away from the labor market. When the children died, the benefit was suspended, impacting families and neglecting the women, whose paid work plans had been suspended by years of caregiving.
In 2016, at the beginning and peak of the epidemic, conversations about financial reparations for the impact of Zika on women's life plans and children's health were not tolerated: compensation made Ana Carla feel that "it seems like I'm rejecting my child”. It was only “after the end” of the epidemic, with the actions of different associations in the country and the political projection of women, that the reparation law for Zika children started to be discussed. The restrictive interpretation that the cash transfer is exclusively for the disabled child and not also for the caregiver has placed women in an even more precarious situation: in addition to families’ income dropping significantly, women lack the qualification and experience expected in the labor market. The discussion about the lack of protection experienced by caregivers of children with disabilities or people affected by health emergencies is on the agenda of political negotiations in Brazil, with the Association playing a strong role.
Bill 6064/23 was vetoed by the federal government and sent back to the Senate. The bill considers affected children as the subjects of the right to reparations, excluding women. Ana Carla, Cleidiane and Dayane consider reparations for children fair; they do not see a separation between what happened to the children and what happened to them. However, they contest the assumption that the child must be alive in order to be entitled to reparations. The value of the reparation is estimated in U$10,000 for each child, which is a significant amount for the families.
Recognizing the right to reparations for Mikael, Emerson and Katlyn is more than a financial claim made about the impact of a preventable epidemic on their children; it is above all a political identification of the three women in the historical moment of the Zika epidemic in Brazil. It is also about Zika-affected women and their lived experiences: “reparations”, they say, "are about what happened to us and our children, and it doesn't matter when they were born or died”. In other words, there is a demand that the effects of the epidemic calendar remain in place, even for women whose children have already died, on whom an undeniable "end" could be projected, or for children born after the end of the reparation calendar as prescribed in bill 6064/23.
After the end
Ethnographic accompaniment has allowed us to problematize how the epidemic calendar shapes political subjectivities for political advocacy or financial reparations, but also how lived experience of motherhood and mourning extrapolates the linearity of emergencies dramaturgy. Dramaturgy times are political events and go beyond the epidemiological descriptors of risks and urgencies of the biology of diseases or of the population's need for care. In the case of the Zika epidemic, the emergency’s official calendar did not begin when the first pregnant woman fell ill with an unknown arbovirus in Brazil; when the first newborn with microcephaly was born; or when science published a paper demonstrating the vertical transmission of Zika. It was only after the emergency calendar was declared that the time of biopolitics and the time experienced by the first communities and people affected could be juxtaposed. In other words, it is with the official calendar that people come to exist politically, as subjects with needs legitimized and recognized by the political power.
Dramaturgy is a narrative framework in which different elements are combined to delineate the short, long, interrupted, or cyclical periods of a health emergency. The dramaturgy signals that a disease has reached the biopolitical scale of a pandemic or epidemic, that it has become endemic, or that it has been eradicated. Once placed on a dramatic narrative, a disease moves financial resources, academic research and news; national and global public health policies; affections and behaviors such as mourning, fear, xenophobia, or solidarity. However, there is a growing body of analysis that suggests that the dramaturgy framework is inadequate for understanding the impact of health emergencies on different countries, communities, or affected people.
The subjectivities that emerge from lived times are not linear as the framework of dramaturgy of health emergencies imagines. In the case of the Zika epidemic in Brazil, women's times oscillate between dialoguing with the official chronology, ignoring it, or even rejecting it. With this study, we hope to have contributed to a growing research agenda on temporalities and health emergencies, particularly on the meanings experienced "after the end" by affected people and communities.
Acknowledgements:
This work was supported by the Wellcome Trust, 225238/Z/22/Z.
Debora Diniz is grateful for her stay at the University of Tokyo, especially to Professor Akinori Hamada.
Rights Retention Statement:
This research was funded in whole or in part by The Wellcome Trust, 225238/Z/22/Z. For the purpose of Open Access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript (AAM) version arising from this submission.
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