Abstract

This article aims to revisit a constellation of responses to guarantee reproductive justice for women and girls during the Zika crisis in Brazil, that were conducted by Anis - Institute of Bioethics, a Brazilian feminist NGO. We argue that intersectional feminist lenses and gender-sensitive responses are necessary to build effective efforts for women and girls during a public health emergency. As such, we present three concomitant and intersectional learned tactics we used to fight for reproductive justice during the Zika crises, but also in its aftermath: 1. To build storytelling narratives that portray the disproportional effects of the crisis on women and girls; 2. To produce evidence-based data to catalyze advocacy strategies for legal and policy review; 3. To promote movement building opportunities and sharing power through community mobilization activities. We assume the importance of providing immediate evidence and gender sensitive framings to inform real-time public health responses. Advocacy efforts should not be seen as fragmented strategies, since ensuring reproductive justice demands a comprehensive and transformative framework that include solutions for multiple aspects of real-life experiences.

Keywords:
Zika virus; Reproductive Justice; Advocacy; Intersectional Feminism; Community Mobilization

Introduction

The devastating long-lasting consequences of the Zika outbreak have disproportionately affected the most vulnerable populations in Brazil (Diniz; Brito, 2018DINIZ, D.; BRITO, L. Uma epidemia sem fim: zika e mulheres. In: RIFIOTIS, THEOFILOS; SEGATA, J. (Ed.). Políticas Etnográficas no Campo da Moral. Porto Alegre: UFGRS Editora, 2018. p. 169-181.; Santos ., 2018SANTOS, B. M. C. et al. Zika: an ongoing threat to women and infants. Cadernos de Saúde Pública, v. 34, n. 11, 8 nov. 2018.). This effect mirrors what epidemics typically do: exacerbate inequalities. Children with disabilities and women bear the greatest burden. Researchers and activists have discussed that the long-term impact on these populations is exacerbated because sexual and reproductive health care is often ignored during emergencies and humanitarian crises (Ambrogi; Brito; Diniz, 2021). In Brazil, the demands of the Zika crisis remain relevant and are worsened by the COVID-19 pandemic. In 2020 alone, according to the Brazilian Ministry of Health, 1,007 new cases of children suspected of being born with Congenital Zika Syndrome (CSZ) were reported in Brazil – an average of more than two cases per day. Brazilian authorities did not report any epidemiological data during 2021.

In 2015 and 2016, Zika became a ordeal for pregnant women who feared getting sick and risking serious complications from vertical transmission. In February 2016, the World Health Organization (WHO) declared Zika-related microcephaly and other neurological disorders a public health emergency of international concern (PHEIC). It was the first time that such a declaration had been made for a mosquito-borne infection with specific reproductive effects. Although Zika infections had been reported in 87 other countries and territories as of July 2019, Brazil was the epicenter of the crisis and its consequences (WHO, 2019).

The Zika emergency turned out to be a mirror of inequalities in Brazil, of gender, race, socioeconomic status, disability, and region (HRW, 2017HRW. Negleted and unprotected: The Impact of the Zika Outbreak on Women and Girls in Northeastern Brazil. [s.l: s.n.], 2017.). Authors have already pointed to the centrality of gender norms to health, including the need to include gender as an important determinant of health in a global perspective (Davies; Bennett, 2016DAVIES, S. E.; BENNETT, B. A gendered human rights analysis of Ebola and Zika: locating gender in global health emergencies. International Affairs, v. 92, n. 5, p. 1041-1060, 2016.; Hawkes; Buse, 2013HAWKES, S.; BUSE, K. Gender and global health: evidence, policy, and inconvenient truths. The Lancet, v. 381, n. 9879, p. 1783-1787, 18 May 2013.). In contrast, the experience of the Ebola outbreak, for example, highlighted the lack of a gender perspective in emergency responses in West African countries (Harman, 2016HARMAN, S. Ebola, gender and conspicuously invisible women in global health governance. Third World Quarterly, v. 37, n. 3, p. 524-541, 3 mar. 2016.). Similarly, in Brazil the public responses to the Zika outbreak were not accompanied by intersectional and gender-sensitive efforts (Davies; Bennett, 2016DAVIES, S. E.; BENNETT, B. A gendered human rights analysis of Ebola and Zika: locating gender in global health emergencies. International Affairs, v. 92, n. 5, p. 1041-1060, 2016.; Wenham ., 2020WENHAM, C. et al. Gender mainstreaming as a pathway for sustainable arbovirus control in Latin America. PLOS Neglected Tropical Diseases, v. 14, n. 2, p. e0007954-e0007954, fev. 2020.).

In response to the Zika crisis, Anis – Institute of Bioethics, a feminist NGO based in Brazil, created a constellation of responses to fight for reproductive justice for women and girls during the epidemic and its aftermath (Brito; Rondon, 2020BRITO, L.; RONDON, G. Zika in Brazil: Reproductive Justice in Response to a Humanitarian Crisis. Brasília: 2020.). Inspired by the Black women’s movement, we understand reproductive justice as a demand for the protection of women’s rights embedded in a human rights and social justice framework (Ross, 2006ROSS, L. Understanding Reproductive Justice: Transforming the Pro-Choice Movement. Off Our Backs, v. 36, n. 4, p. 14-19, 2006.). Advocacy strategies embedded in a reproductive justice commitment link sexual and reproductive health and rights with broader social justice efforts. On this basis, for example, we advocated for access to abortion, but also for a universal cash transfer for all women and children affected by the epidemic, along with access to specialized healthcare for children with disabilities. The combination of all these strategies, which could be seen as contradictory by some (Mohapatra, 2019MOHAPATRA, S. Law in the Time of Zika: Disability Rights and Reproductive Justice Collide. Brooklyn Law Review, v. 84, n. 2, p. 325-366, 2019.), is a fundamental representation of our understanding of what an ethic of reproductive justice ethics requires in a crisis such as the one caused by the Zika virus.

The purpose of this article is to revisit Anis’ actions. We argue that intersectional feminist lenses and gendered responses are necessary to build effective efforts for women and girls during a public health emergency. Intersectional feminist lenses in the health agenda have been proposed to advance gender equality (Davies ., 2019DAVIES, S. E. et al. Why it must be a feminist global health agenda. Lancet, v. 393, n. 10171, p. 601-603, 9 fev. 2019.; Kapilashrami; Hankivsky, 2018KAPILASHRAMI, A.; HANKIVSKY, O. Intersectionality and why it matters to global health. The Lancet, v. 391, n. 10140, p. 2589-2591, 2018.). We understand intersectionality as an ethical perspective for analyzing regimes of power that oppress, exclude, and violate certain groups of people in order to maintain privileges for other groups (Crenshaw, 1989CRENSHAW, Kimberle. Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics. University of Chicago Legal Forum, v. 1989, n. 1, article 8, 1989.; Sariola, 2020SARIOLA, S. Intersectionality and Community engagement: can solidarity alone solve power differences in global health research? Am J Bioeth., v. 20, n. 5, p. 57-59, 2020.; Brito; Santos; Rego, 2022). As we understand feminism as a lens of inclusion and diversity, the intersectional feminism recognizes the multiple factors that can violate rights – such as race, gender, geography, age, disability, poverty, and many other aspects that intersect and exarcebate inequalities. In this sense, intersectional feminism takes into account the diversity of voices and experiences of those who experience gender-based oppression and discrimination in different ways (UN Women, 2020UN WOMEN. Intersectional feminism: what it means and why it matters right now. July 2020. Disponível em: https://www.unwomen.org/en/news/stories/2020/6/explainer-intersectional-feminism-what-it-means-and-why-it-matters
https://www.unwomen.org/en/news/stories/... ).

Therefore, we present three intersectional tactics to promote a gender transformative change during a public health crisis. First, building storytelling narratives that portray the disproportionate impact of the crisis on women and girls; second, producing evidence-based data to catalyze advocacy strategies for legal and policy review; third, promoting movement-building opportunities and power-sharing through community mobilization activities. These are all based on our experience and can be understood as a case study of how to apply the reproductive justice framework to the advocacy strategies of a feminist NGO in the Global South. We recognize the importance of providing immediate evidence and gender-sensitive framing to inform real-time public health responses. Advocacy strategies are central to ensuring the protection of the rights and needs of women and children affected by epidemics. During a public health emergency, advocacy efforts should not be seen as fragmented strategies, as ensuring reproductive justice requires a comprehensive and transformative framework that includes solutions to multiple aspects of real-life experiences (Ross, 2006ROSS, L. Understanding Reproductive Justice: Transforming the Pro-Choice Movement. Off Our Backs, v. 36, n. 4, p. 14-19, 2006.).

During a crisis like the one caused by Zika, this lesson was even more important, as it was necessary to demonstrate in our actions that sexual and reproductive rights are not in conflict with the rights of people with disabilities (Mohapatra, 2019MOHAPATRA, S. Law in the Time of Zika: Disability Rights and Reproductive Justice Collide. Brooklyn Law Review, v. 84, n. 2, p. 325-366, 2019.). On the contrary: a framework of reproductive justice and disability justice simultaneously requires the protection of the different ways of experiencing the body, care and dependency, as well as special attention to the conditions in which people live their sexuality, reproduction and access to resources and rights that protect motherhood and childhood. In all sections, this assumption can be understood as the basis of our mobilization.

Building narratives: women and girls at the center of Zika crisis

At the onset of the Zika outbreak, despite the excessive media coverage of Zika’s impact on infant development, women, girls and their needs were not at the center of the narratives. Instead, they were secondary characters in the frame of the war against mosquitoes and the diagnosis of microcephaly (Ophir; Jamieson, 2020OPHIR, Y.; JAMIESON, K. H. The Effects of Zika Virus Risk Coverage on Familiarity, Knowledge and Behavior in the U.S. – A Time Series Analysis Combining Content Analysis and a Nationally Representative Survey. Health Communication, v. 35, n. 1, p. 35-45, 2 jan. 2020.). The “microcephaly outbreak” was reported in the daily newspapers with updated figures about the births of “small-headed babies” and the silent resignation of their racialized and impoverished mothers. The focus was on the children’s disabilities, including images of malformations and the discussion was about “a lost generation” (Porto; Costa, 2017PORTO, R. M.; COSTA, P. R. S. M. O Corpo Marcado: a construção do discurso midiático sobre Zika Vírus e Microcefalia. Cadernos de Gênero e Diversidade, v. 3, n. 2, 30 jul. 2017.). While disability was inappropriately portrayed as a tragedy, little was said about the violation of the rights of women and girls who experienced the anguish of pregnancy during this period in Brazil. On the other hand, there were reports of elite families who were able to choose to migrate abroad for the duration of their pregnancies (Butti, 2016BUTTI, N. Mulheres estão tomando medidas radicais para fugir do vírus da zika. Rede Globo, Fantástico, Rio de Janeiro, 07 fev. 2016. Disponível em: https://globoplay.globo.com/v/4795068/. Acesso em: 29 jan. 2023.
https://globoplay.globo.com/v/4795068/.... ).

The mainstream narrative, which excluded the voices of the most affected populations – that is, women and girls, especially the most vulnerable – reveals the structural neglect that intersects gender inequality with other inequalities. Texts and images in a news frame produce meanings about the Zika outbreak, but the meaning produced by the mainstream media was far from the impact of Zika on those most affected. Researchers and activists have already shown that the Zika epidemic turned out to be a humanitarian crisis that particularly affected women of reproductive age, who face greater and historical layers of vulnerability (Ambrogi; Brito; Diniz, 2021). Clearly, these women are very different from the majority of women who were effectively heard by the media at the onset of the emergency, who could travel abroad, or who had access to information and contraception to avoid becoming pregnant during a health crisis.

Reshaping the mainstream frame to place the most affected women at the center of the discussion should be an important strategy for media coverage. To shift the mainstream narrative about Zika and its consequences, Anis’s team worked with partner journalists to disseminate women-centered stories and make women and girls the protagonists of stories. From 2015 to 2020, 735 articles referencing Anis’s work on Zika were published in the national and international media (Brito; Rondon, 2020BRITO, L.; RONDON, G. Zika in Brazil: Reproductive Justice in Response to a Humanitarian Crisis. Brasília: 2020.). These articles included interviews with the Anis team, data from our qualitative studies or stories from the women with whom the team worked with.

Since the beginning of the epidemic, our team had been working along with women in several affected communities and, so we were able to have access and document their daily lives. Between February and March 2016, a few weeks after the WHO announced that Zika was a Public Health Emergency of International Concern (PHEIC), the Anis team traveled to the epicenter of the country’s epidemic to collect and to share the stories of women surviving Zika. Our first step was to produce a documentary about the stories of five of these women (Diniz, 2016aDINIZ, D. Zika. Itinerante Filmes, 2016a.). Narratives from the field are useful for enlarging our ethical toolkit about other realities (Diniz, 2019DINIZ, D. Enlarging bioethics imagination in humanitarian settings. Developing World Bioethics, v. 19, n. 3, p. 124-125, 2019.). Hearing women’s voices can allow different actors to imagine how problems are actually experienced. Multiple sources of narratives should be used to expand people’s imaginations about their moral concerns and move them to take action.

Participatory visual methods, such as digital storytelling, can be a powerful tool for documenting the voices and needs of those most affected. Digital stories privilege the narratives of participants and have the potential to represent their experiences in a first-person perspective (Gubrium; Hill; Flicker, 2014). In this context, participatory methods have been identified as a democratic and consolidated technique for transferring power and generating information centered in the communities (Packard, 2008PACKARD, J. ‘I’m gonna show you what it’s really like out here’: The power and limitation of participatory visual methods. Visual Studies, v. 23, n. 1, p. 63-77, 2008.). During the Zika epidemic and on its aftermath, Anis’s team worked to build the opportunities to portray women, girls, and their families as storytellers who have the primary control over what information is important to share to expand the imaginations of other audiences (Diniz, 2019DINIZ, D. Enlarging bioethics imagination in humanitarian settings. Developing World Bioethics, v. 19, n. 3, p. 124-125, 2019.).

After the epidemic, Zika faded from the public conversation, but we continued to tell stories about the ongoing impact of this health emergency on the lives of women and families. We did this primarily by linking Zika-related rights violations to other issues on the political agenda, to ensure that the demands of the most affected populations gained visibility. These objectives have become a permanent commitment to the communities we have worked since the Zika outbreak in 2015 (Brito; Rondon, 2020BRITO, L.; RONDON, G. Zika in Brazil: Reproductive Justice in Response to a Humanitarian Crisis. Brasília: 2020.). For example, in 2019, the Anis team contributed to the production of an in-depth media piece and minidocumentary for a Brazilian newspaper about women in central Brazil who are living with children affected by Zika (Contaifer, 2019CONTAIFER, J. 2019. As mães da zika abandonadas no coração do país. Disponível em: <https://www.metropoles.com/materias-especiais/as-maes-da-zika-abandonadas-no-coracao-do-pais>.
https://www.metropoles.com/materias-espe... ). This wis a region of the country that Zika was not thought to have reached, so the goal of the coverage was twofold: to show that the epidemic’s impact was more territorially widespread than previously thought, and to showcase the different needs that caregivers and children face as they grow up.

In 2019, Anis’s team also produced short videos featuring stories of women living with the long-lasting consequences of the Zika epidemic. The short videos have allowed for greater reach, engagement, and distribution on social networks. The videos are available on YouTube, with subtitles in Portuguese, English, and Spanish. Three storytellers were featured in the short videos. Ana Lúcia Mota is the grandmother of Dayara, a child with congenital Zika syndrome. She reflected on the importance of the community association in Alagoas, Brazil, for securing social rights and access to health care (The Legacy of Zika, 2019aTHE LEGACY OF ZIKA in Alagoas: Ana Lucia and Dayara [S. l.: s. n.], 2019a. 1 video (1’28”). Published by the channel Anis - Instituto de Bioética. Disponível em: https://www.youtube.com/watch?v=Fd6OVPCGSrY&list=PLf-Oz5dUh_niYt8DbLCkCRuCQlTa_ovun&index=34. Acesso em: 29 jan. 2023.
https://www.youtube.com/watch?v=Fd6OVPCG... ). Alessandra Hora is Erik’s grandmother and a community leader. She spoke about how the creation of a grassroots association of women affected by Zika was instrumental in strengthening women’s community engagement (The Legacy of Zika, 2019bTHE LEGACY OF ZIKA in Alagoas: Alessandra and Erik [S. l.: s. n.], 2019b. 1 video (2’17”). Published by the channel Anis - Instituto de Bioética. Disponível em: https://www.youtube.com/watch?v=Fd6OVPCGSrY&list=PLf-Oz5dUh_niYt8DbLCkCRuCQlTa_ovun&index=34. Acesso em: 29 jan. 2023.
https://www.youtube.com/watch?v=Fd6OVPCG... ). Lenice do Nascimento is the mother of Enzo, a school-aged child affected by Zika. She spoke about the importance of a school that is accessible to children with disabilities, and how school has played an important role in allowing her to plan for a return to paid work (The Legacy of Zika, 2019c).

Of course, none of these strategies alone guarantee policy transformation. However, it could be argued that they have not only contributed to a more skilled and diversified public debate on the issues most affected by Zika – women and girls – but also the visibility and leadership of these women in their persistent struggles for their children’s rigths to health for several years after the onset of the crisis. In 2022, for example, many of these women were leaders in the struggle to pass a law prohibiting health insurance companies from limiting the list of procedures available to their children – and they were successful (Utida, 2022UTIDA, M. Movimentos sociais de todo Brasil lutam pela derrubada do ‘rol taxativo’ e aprovação do PL 2033/22. Mídia Ninja, Brasília, 28 July 2022. Disponível em: https://midianinja.org/news/movimentos-sociais-de-todo-brasil-lutam-pela-derrubada-do-rol-taxativo-e-aprovacao-da-pl203322/. Acesso em: 29 jan. 2023.
https://midianinja.org/news/movimentos-s... ).

Evidence-based information to build advocacy strategies

The production of evidence about a public health emergency or humanitarian crisis is fundamental to understanding the magnitde of its impact on the most vulnerable populations. In addition, demonstrating the extend of rights violations resulting from the outbreak, accompanied by the faces and voices of women and girls can play a transformative role in embedding reproductive justice ethics in approaches to an epidemic. From this perspective, we aimed to produce evidence-based data to catalyze advocacy strategies for legal and policy revisions to protect the rights of those most vulnerable to the long-lasting consequences of the Zika epidemic. One of Anis’ initial strategies was to persuade the Brazilian state to provide evidence of how it had protected women and girls most vulnerable to Zika. It quickly became clear that there were no specific policies for this population in the country. Qualitative research was then initiated to gather additional evidence that could advance advocacy strategies (Diniz, 2017DINIZ, D. Zika in Brazil: women and children at the center of the epidemic. Brasilia: [s.n.], 2017.).

To collect such evidence, a case study was conducted in the state of Alagoas , one of the states at the epicenter of the epidemic, which has both the lowest Human Development Index (HDI) and the highest teenage pregnancy rate in the country. In December 2016, guided by a list of the municipalities that had reported cases to the Brazilian Ministry of Health, we listened to the stories of 54 women (Diniz, 2017DINIZ, D. Zika in Brazil: women and children at the center of the epidemic. Brasilia: [s.n.], 2017.). At that time, there were 86 women in the state of Alagoas whose children had a confirmed Zika-related diagnosis. The study allowed the Anis team to document the violation of rights in the lives of women and children, which has been exacerbated by the Zika epidemic. The study found that most of the women affected were young and Black, and that three out of four experienced their first pregnancy during adolescence and had little schooling. Half of the women were not using any form of contraception, even though they did not intend to become pregnant again. Despite their need for social protection, many were not covered by social programs and did not receive adequate health care (Ambrogi; Brito; Diniz, 2021).

But during a public health emergency, it is not enough to show that an epidemic violates rights – it is also necessary to demand that these rights be fulfilled. Based on the evidence gathered during the case study, Anis also presented a report with policy recommendations for different spheres of government at the municipal, state, and federal levels (Diniz, 2017DINIZ, D. Zika in Brazil: women and children at the center of the epidemic. Brasilia: [s.n.], 2017.). The report also led to the creation of the first task force in the state of Alagoas to review the cases identified by the epidemiologic surveillance system - children from rural and urban areas were referred to the reference hospitals for additional testing. More than 60 cases that had been discarded at the beginning of the epidemic were re-evaluated, and almost half of them were confirmed cases and then included in the state’s efforts (Brito; Rondon, 2020BRITO, L.; RONDON, G. Zika in Brazil: Reproductive Justice in Response to a Humanitarian Crisis. Brasília: 2020.).

Anis’ research was also central to strategic litigation strategy during the Zika epidemic. Proposing strategic litigation actions in local or international courts can be a relevant tool in democracies to ensure state accountability for failures to protect the most vulnerable populations from public health emergencies (Biehl ., 2019BIEHL, J. et al. Judicialization 2.0: Understanding right-to-health litigation in real time. Global Public Health, v. 14, n. 2, p. 190-199, 21 fev. 2019.). In August 2016, Anis together with the National Association of Public Defenders (ANADEP), submitted a petition to the Brazilian Supreme Court to protect the rights violated by Zika (STF; ANADEP, 2016). The demands submitted to the Supreme Court were based on a holistic perspective of reproductive and disability justice. Both individual and collective remedies were requested for several demands, such as the implementation of social policies and a universal income transfer program to protect women and children affected by Zika and access to specialized health care for infants and children with Congenital Zika Syndrome (CZS). For the general population, but especially for adolescents and women of reproductive age, the case demanded access to family planning programs with distribution in the public health network of long-term reversible contraceptives. For pregnant women infected with the Zika virus and in psychological distress due to the epidemic, the Supreme Court case demanded the right to choose to terminate a pregnancy in order to protect one’s mental health, given that the Zika virus subjects infected women to intense suffering in the face of uncertainty about the effects of the infection on their pregnancy.

Working with various experts, Anis’s team was able to add substance to these demands by using reliable evidence on the impact of the Zika epidemic that was being produced in real time. In a coordinated effort to organize evidence for advocacy, several technical opinions written specifically on the issue were attached to the initial petition to the Brazilian Supreme Court (STF; ANADEP, 2016). Anis researchers with disabilities also participated in the debate, producing analyses on the convergence between feminisms, abortion rights, and the protection of life and autonomy of people with disabilities, without resorting to criminal law (Guedes de Mello; Rondon, 2020GUEDES DE MELLO, A.; RONDON, G. Feminism, disability, and reproductive autonomy: abortion in times of Zika in Brazil. Somatosphere, p. 1-17, 2020.).

Between 2016 and 2020, the Brazilian Supreme Court was scheduled to rule on the Zika case four times. Even though the court did not issue a final decision, each time the case was placed on the agenda, it provided a new opportunity for more public discussion about the multiple claims of the lawsuit. For example, in 2019, the return of the Zika case to the Supreme Court's agenda for the third time prompted lawmakers, with Anis’s support, to introduce a legislative proposal aimed at expanding access to income transfer benefits for families affected by Zika. This was a unique opportunity to expand reproductive justice for women and their families by exploiting the tension between the two branches of power. The conservative sectors were forced to back down on the proposal to create a lifetime pension for Zika victims – largely because they wanted to avoid the abortion debate that was part of the court case. However, the pension provides another remedy for women and families affected by Zika and is particularly important given the exacerbation of inequality and poverty affecting these communities as a result of the COVID-19 pandemic (STF; ANADEP, 2016).

The pension law entered into force in early 2020 (Resende, 2020RESENDE, S. Senado aprova MP que dá pensão vitalícia às crianças com microcefalia causada pelo zika, G1, Brasília, 05 fev. 2020. Disponível em: https://g1.globo.com/politica/noticia/2020/02/05/senado-aprova-mp-que-da-pensao-vitalicia-as-criancas-com-microcefalia-causada-pelo-zika.ghtml. Acesso em: 29 Jan. 2023.
https://g1.globo.com/politica/noticia/20... ). The enacted law, 13,985/2020, which regulates the access to the permanent cash transfer benefit for children diagnosed with CSZ, did not include ideal language, as it requires that children who access it also be also eligible for the Brazilian Income Transfer (BPC). There is an extremely low income requirement for families to access the BPC benefit – the family income per capita should be less than ¼ of the Brazilian monthly minimum wage (i.e., U$ 60 per person/month). In practice, this means that families will not be able to receive both benefits, because if they receive the life pension, they will automatically no longer meet the criteria for receiving the BPC. On the other hand, many families that face daily with "catastrophic expenses" for childcare, but do not meet the criteria to receive the BPC, will also not be able to receive the benefit of the Lifetime Pension (Santos; Rosario, 2020). Anis is still struggling in the Brazilian courts to expand the interpretation of this law for universal coverage of all Zika victims. Nevertheless, as it stands today, it at least guarantees a permanent cash transfer benefit to the most vulnerable families, without the need for periodic verification of their socioeconomic status.

In late April 2020, the Zika constitutional case was placed on the agenda of the Brazilian Supreme Court for the fourth and final time. This time for a virtual ruling due to the need for social distancing. With the public attention focused on the pandemic and the political crisis, the case was dismissed on procedural grounds, that is, without any analysis of the merits of the claims (Gomes, 2020GOMES, J. C. A. Opacidade do plenário virtual, Zika e censura nas escolas: obstáculo ou estratégia? Jota, 12 May 2020. Disponível em: https://www.jota.info/stf/supra/opacidade-plenario-virtual-zika-censura-escolas-12052020. Acesso em: 29 jan. 2023.
https://www.jota.info/stf/supra/opacidad... ). One of the main arguments for the rejection was the fact that the Brazilian National Congress had already approved the lifelong pension. Even though the other demands of the case remained unresolved, this was taken as a sign that there was no political negligence to be overcome by the court. That is, there was no political interest at the time in addressing the other issues. The case was closed, but it left its mark on the ongoing struggle for reproductive justice in Brazil. Not only did it help advance a legislative debate on social policies for Zika-affected children and families, but it also contributed to the broader Brazilian debate on reproductive injustice and abortion (Schossler, 2016SCHOSSLER, A. Zika esquentou debate sobre aborto no Brasil, DW, 03 fev. 2016. Disponível em: https://www.dw.com/pt-br/zika-esquentou-debate-sobre-aborto-no-brasil-afirma-imprensa-alem%C3%A3/a-19025285. Acesso em: 29 Jan. 2023.
https://www.dw.com/pt-br/zika-esquentou-... ). It was only after the Zika lawsuit that it was possible to present the first constitutional case to decriminalize abortion in Brazil, filed by the Socialism and Liberty Party (PSOL)in 2017 with technical support from Anis, and still pending in 2023, sparking ongoing debates on the issue (Jota, 2023JOTA. 2023 será o ano em que o STF julgará a descriminalização do aborto? Jota, Brasília, 03 feb. 2023. Disponível em: https://www.jota.info/opiniao-e-analise/colunas/sem-precedentes/2023-sera-o-ano-em-que-o-stf-julgara-a-descriminalizacao-do-aborto-03022023. Access on: 12 jun. 2023.
https://www.jota.info/opiniao-e-analise/... ).

Evidence-based public policies have been presented for decades as an important mechanism for improving the health and rights of populations (Chhetri; Zacarias, 2021CHHETRI, D.; ZACARIAS, F. Advocacy for Evidence-Based Policy-Making in Public Health: Experiences and the Way Forward. Journal of Health Management, v. 23, n. 1, p. 85-94, 31 mar. 2021.). However, the disproportionate impact of public health emergencies on the lives of women and girls has been neglected by public authorities. In this context, advocacy strategies to disseminate evidence play a key role in amplifying the strategies to create conditions to guarantee gender justice and human rights to those most affected, even if in non-linear ways, including losses – such as the mistrial of the constitutional case – and unforeseen debates.

The Brazilian state has not yet provided satisfactory responses to the Zika crisis, and its negligence has been exacerbated by the denialism officially adopted by the Brazilian government during the COVID-19 pandemic, which once again had a disproportionate impact on women and girls. The alarming maternal mortality rates were only the most visible facet of this effect (Diniz; Brito; Rondon, 2022; Souza; Amorim, 2021). Nevertheless, the lessons learned from the Zika emergency should serve as a reminder of the possibility of uniting social research, litigation, and advocacy to continue to make visible and demand accountability from the Brazilian state in the protection of women and girls and gender equality, a task to which Anis remains committed (Rondon; Diniz; Benvindo, 2022; Santana ., 2022SANTANA, J. et al. Renda básica do zika à covid-19: amparando as trabalhadoras do cuidado em emergências humanitárias. Áltera, n. 14, p. 1-28, 2022.; Santos; Rosario, 2020).

Movement building for sharing power

The World Health Organization defines community engagement for health as “a process of developing relationships that enable people of a community and organizations to work together to address health-related issues and promote well-being to achieve positive health impacts and outcomes” (WHO, 2017WORLD HEALTH ORGANIZATION. WHO community engagement framework for quality, people-centred and resilient health services. Geneva: WHO, 2017.). While this concept may be new to the health literature, but it is important to recognize that women have historically protagonists of solidarity for social justice during public health emergencies and other humanitarian crises (Nunes, 2021NUNES, N. R. D. A. The power that comes from within: female leaders of Rio de Janeiro’s favelas in times of pandemic. Global Health Promotion, v. 28, n. 2, p. 38, 2021.). They have developed multiple solidarities in their communities and, as a result, have been agents of social change. We understand that no effective or just response to the long-lasting consequences of the Zika epidemic would be possible without listening to and understanding women’s experiences and needs, both individually and collectively. With this in mind, the categories of community mobilization and movement building are the ones that most accurately define the work we have committed to engage in - more so than community engagement, which could be understood in terms of creating community ties, that are still non-existent or fragile. We argue that both terms more fully reflect the community arrangements and leaderships necessary to overcome barriers in restrictive contexts.

Strengthening local leadership strategies – whether by promoting training, capacity building, or facilitating linkages with other relevant actors – is a key part of building stronger movements to ensure reproductive justice. In this regard, Anis’ team also worked with women and girls from the affected communities to promote community mobilization and movement building in support of women’s rights. Through community mobilization activities in the areas most affected by Zika, we understood that it was not possible to separate the health needs from social protection demands. For example, it was not posible to demand access to health care without also demanding urban mobility and transportation, or to demand the protection of women and girls reproductive choices without ensuring access to income and social protection programs for children with disabilities. The complexity of these demands was reflected in our constitutional case mentioned earlier.

Anis also worked as a facilitator to strengthen the mobilization and leadership of women’s movements in the struggle for their rights and needs. The Zika epidemic in Brazil demonstrated a well-known aspect shared by grassroots communities: women’s knowledge is empirically rooted in their daily experiences (Diniz, 2016bDINIZ, D. Zika virus and women. Cadernos de Saude Publica, v. 32, n. 5, 2016b.). Nevertheless, the Zika epidemic and its aftermath also revealed a poverty trap that plagued families living with historical inequalities and burdened by multiple layers of vulnerabilities (Diniz, 2017b).

Combining social science research and community mobilization, Anis’s goal was to bring women’s rights and needs at the center of the public debate in Brazil and in Latin America. Anis’ teamwork during the Zika epidemic, but also in its aftermath, demanded a continuous presence in the communities, which allowed us to share power to build women’s confidence and strengthen community mobilization for health and rights. Between 2017 and 2020, Anis team held 70 information access meetings with more than 800 women and health professionals in 10 Brazilian states (Brito; Rondon, 2020a). These workshops were instrumental in strengthening community leadership and raising awareness among health professionals about sexual and reproductive health issues during the Zika outbreak. By engaging with women and families, we were able to produce educational materials that addressed the most common questions about unmet sexual and reproductive health needs, as well as materials about the social services to which families are entitled to and the rights of women and children with disabilities. The Anis team also provided technical support for the creation and formalization of four community associations of women and families affected by Zika in different Brazilian states, a fundamental tool for building capacity for autonomous local advocacy and movement building. The community associations continue to be active in their states, promoting various activities ranging go from providing services to the community and promoting celebrations, to advocating with public authorities to guarantee rights and improve policies.

The Anis team has been in constant contact with women and families affected by Zika and their associations, even during the COVID-19 pandemic. This was possible due to the fact that, in the scenario of the Zika virus epidemic, several WhatsApp groups were created by mothers and women caregivers of children with CZS, in which Anis researchers also participated, answering questions about access to social rights and sharing informative materials on different topics (Ambrogi; Brito; Rego, 2022). These mobile instant messaging groups were created by women in several Brazilian states to share knowledge and experiences about the routines of caring for babies, but also as a tool to struggle for health and social justice (Carneiro; Fleischer, 2020CARNEIRO, R.; FLEISCHER, S. Em Brasília, mas em Recife: atravessamentos tecnometodológicos em saúde, gênero e maternidades numa pesquisa sobre as repercussões da epidemia do vírus Zika. Saúde e Sociedade, v. 29, n. 2, 11 maio 2020.). These virtual groups became a community space for sharing and distributing power among the women and girls affected by Zika. Mobile phone apps as virtual connectors have been reported as a powerful social mobilization strategy and a health information tool, especially in vulnerable contexts during public health emergencies such as the COVID-19 pandemic (Caperon ., 2021CAPERON, L. et al. Identifying opportunities to engage communities with social mobilisation activities to tackle NCDs in El Salvador in the context of the global COVID-19 pandemic. International Journal for Equity in Health, v. 20, n. 1, p. 1-13, 9 out. 2021.; Ekzayez ., 2020EKZAYEZ, A. et al. COVID-19 response in northwest Syria: innovation and community engagement in a complex conflict. Journal of Public Health, v. 42, n. 3, p. 504-509, 18 ago. 2020.).

Women and their families affected by Zika have faced two epidemics in the past seven years. The COVID-19 pandemic also disproportionately affected women as caregivers of children with CZS. The struggle for disability rights and the emergency cash transfer for social and economic justice was on the agenda of women leaders of community associations. Social protection interventions, such as the cash transfer, have been documented as an important intervention to improve health and equity for the population (Rasella ., 2013RASELLA, D. et al. Effect of a conditional cash transfer programme on childhood mortality: A nationwide analysis of Brazilian municipalities. The Lancet, v. 382, n. 9886, p. 57-64, 6 jul. 2013.). During the COVID-19 pandemic, an important achievement spearheaded by civil society and progressive parliamentarians was the right for women who were the breadwinners in their families to receive twice the amount of the emergency assistance benefit (Agência Senado, 2021AGÊNCIA SENADO. Mulheres provedoras com direito a duas cotas poderão receber auxílio retroativo. Senado Notícias, 11 jun. 2021. Disponível em: https://www12.senado.leg.br/noticias/materias/2021/06/11/mulheres-provedoras-com-direito-a-duas-cotas-poderao-receber-auxilio-retroativo. Acesso em: 29 jan. 2023.
https://www12.senado.leg.br/noticias/mat... ). In this context, WhatsApp was an important tool for community mobilization and engagement. Women used the mobile app to share experiences and support each other in registering and applying for the emergency cash transfer - especially considering the barriers these women faced in registering on the official platform provided by the Brazilian state (Santana ., 2022SANTANA, J. et al. Renda básica do zika à covid-19: amparando as trabalhadoras do cuidado em emergências humanitárias. Áltera, n. 14, p. 1-28, 2022.). The Anis team also registered the main barriers faced by families and prepared a document that was shared with federal government representatives to improve this policy.

Conclusion: amplifying advocacy perspectives for reproductive justice

After more than seven years of mobilization around the multiple health and social justice needs exacerbated by the Zika epidemic, it may be possible to say that the intersectionality of the demands that were at the heart of the Zika crisis are now more visible than before. The strengthening of the leadership of women from the communities most affected by the virus and the qualification of the public debate on sensitive issues are significant and sustainable gains for the continuation of the struggle for reproductive justice, social justice and disability justice in Brazil.

In the approaching post-pandemic world of COVID-19, these gains will be instrumental in guaranteeing the rights of women and girls. We know that there will be no effective or equitable response to public health emergencies without listening to and understanding women’s experiences and needs. Combining social science research, community mobilization, and multiple advocacy strategies, including litigation, a feminist response must place women’s rights and intersectional needs at the center of the public debate in Brazil and in Latin America.

Defending such ideas the day after a pandemic and the defeat of an authoritarian government that had devastating effects on the country's health indicators, especially for the most vulnerable populations, may seem counterintuitive. There has undoubtedly been a setback, including in gender equality indicators, and many of the demands listed here have still not been met. However, we would like to insist that the legacy of the mobilization around Zika has not disappeared and, on the contrary, provides a relevant framework of strategies and the continued empowerment of women leaders who can and must lead the reconstruction of policies that have justice and care at their core, and where reproductive and disability justice intersect and reinforce each other.

While at times a partial victory on one demand, such as the lifetime pension for Zika victims, may be combined with a delay in other debates, such as the dismissal of the lawsuit, which at the time prevented a more substantive discussion on reproductive injustice, access to contraception and abortion, we would still insist on the importance of advancing them all together as part of the same comprehensive reproductive justice framework. Possible strategic choices to prioritize one demand over another are necessary in the face of unequal political opportunities and the pressing needs of the most vulnerable women and girls, but this does not delegitimize the underlying argument of the interconnectedness of all of them. In contingent and unstable circumstances, we create and reinforce the ethical compromise with the protection of all forms in which people live their sexuality, reproduction and access to resources and rights that protect their life projects.

We presented some examples of how the Anis team has worked on advocacy tactics that include three main aspects: gathering evidence to transform public polices and reframe mainstream news narratives, promoting feminist litigation to protect and expand rights and reproductive justice, and cultivating spaces for mutual learning and power sharing. At the same time, it is important to note that Anis’s team did not work alone. Complementary strengths and capacities were leveraged alongside with a variety of partners from a progressive ecosystem that includes women and their families affected by Zika – and the strengthening of this ecosystem and its continued work during the COVID-19 pandemic and beyond is a gain from this process.

Advocacy wins are multiple, and they do not just happen when a law is passed or a court case is won. Shifts in public opinion that make previously ignored issues more visible, or the repositioning of previously unasked questions, can also be understood as wins, although they must be continuously mobilized to produce concrete changes in people's lives. Even losses in advocacy strategies constitute a relevant memory in the struggle for rights, tensioning the hegemonic framework of exclusion and providing vocabulary and tools for the continued struggle for justice. It is our duty, however, not to be satisfied with these partial victories: we must carry forward the lessons learned forward and not allow the continuing effects of the epidemics to be forgotten.

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