Abstract

The Congenital Zika Syndrome (SCZ) engenders a social mechanism which raises “care for others” to a motto of life. Caring for others is an action strewn with notions of sacrifice and of an ambiguous self-esteem. It is a choice among few options which affects the life of people who face the misfortune of having to decide how to deal with the very exacting demands of children who were born with microcephaly and its associated symptoms. Since SCZ is a new pathology, caretakers and infants have embarked on unknown trajectories concerning childhood growth potential and in search of a better quality of life^(gg The term “quality of life” evokes diverse semantics, expectations and references depending on the perspectives of those who think of it as a “positive end” in itself. We understand that the notions the term brings up vary in accordance with the context of reference included in discourse about such ends.⁾. Examples of limitations imposed upon persons with disabilities and rare diseases point to an uncertain future full of barriers that, generally, appear to be insurmountable. Along the route, one of the symbolic resources which looms as most effective is to hold firmly onto the positive nature of maternal dedication and the regard of infancy and childhood and all their associated relationalities.

This article argues that the practical and symbolic construction of maternity and infancy oscillates among a multiplicity of meanings which mark the obligation of men and women to dedicate themselves as participative caretakers, in a daily reality which ties their lives to an incessant search for diverse causal explanations and therapeutic responses. Invariably, those that follow the therapeutic itineraries suggested by this search are creating multifaceted images of themselves in direct and indirect relation to maternity, to childhood and to biological and social filiation.

This article accompanies the therapeutic itineraries of dozens of caretakers in many different social and life spaces, such as: 1) pregnancy and the institutions which inform families about the presence of the SCZ in the child, 2) the neighborhood and its relational networks, 3) the services of therapeutic institutions, 4) social work and welfare services, and 5) associations that protagonize efforts to improve health services as well as life conditions for the caretakers and the children. Instead of presenting details about social relations and the organization of the specific places that were visited during the ethnographic experience of the research project on “Doing etnography of Care.^(hh SCOTT, R, P et al. "Etnografando Cuidados e Pensando Políticas de Saúde e Gestão de Serviços para Mulheres e Seus Filhos com Distúrbios Neurológicos Relacionados com Zika em Pernambuco, Brasil" (Doing ethnography on Care and ThinkingHealth Policy and Adminiistration of Public service for women and their children with Zika-related neurological disorders in Pernambuco” (MCTIC/FNDCT -CNPq / MEC-CAPES/ MS-Decit No 14/20. Process 440411/2016-5, Approved nº 2.001.642. Health Research Ethics Committee Comité of the Fedral University of Pernambuco. Version for Institutional Links-Newton Fund APQ-0553-7.03/16- Action Ethnography on Care, Disability and Health Policy and Administration of Public Service for Women and Caretakers of Zika vírus affected Children in Pernambuco, Brazil.⁾, we emphasize how different contexts encountered during therapeutic itineraries favor contrasting constructions of notions of maternity and childhood done in accordance with value-ideas (Dumont) emphasized in each context¹1. Duarte LFD. Investigação antropológica sobre doença, sofrimento e perturbação: uma introdução In: Duarte LFD, Leal OF, organizadores. Doença, sofrimento, perturbação: perspectivas etnográficas. Rio de Janeiro: Fiocruz; 1998. p. 9-27..

Necessarily the symbolic and emotional construction concerning life experience of the practice of care points to varying ways of living the human condition related to the SCZ, emphasizing both vulnerabilities and resiliencies for caretakers and for care receivers as they pass through processes of understanding maternity and childhood. Sometimes fully medicalized meanings will be used, and other times efforts will be made to keep distant from the medicalization of the meaning of life, bringing forth questions about the implications of taking on symbolic and material responsibilities of care in which the “vital conjuncture”²2. Johnson-Hanks J. On the limits of life stages in ethnography: toward a theory of vital conjunctures. Am Anthropol. 2002; 104(3):865-80. of SCZ has placed their daily lives.

Therapeutic itineraries, maternity and childhood

Much of the literature on maternity and childhood directly or indirectly derives from the recognition of Elizabeth Badinter³3. Badinter E. Um amor conquistado: o mito do amor materno. Dutra W, tradutor. Rio de Janeiro: Nova Fronteira; 1985. that there is an historical marker which intensly highlights private life in the modern world by neatly separating feminine work as associted to the less-valued reproductive spheres and masculine work to the better paid and, symbolically, comparatively more-valued productive sphere. The following centuries saw the multiplication of social and cultural instances in which maternity and practices of care contributed to the forming of a super-valued composite myth which was “proven” by way of its association to acts of love, tenderness, dedication and sacrifice. Scientists searched avidly into biological and genetic links which were seen as proof reinforcing the division between reproductive and productive spheres by means of a medicalized discourse⁴4. Rohden F. Uma ciência da diferença: sexo e gênero na medicina da mulher. 2a ed. Rio de Janeiro: Fiocruz; 2009.. At the same time a rich theoretical and practical tradition in maternal-child health established itself as one of the most hegemonic medical discourses⁵5. Vilela W, Monteiro S, organizadores. Gênero e saúde: programa saúde da família em questão. São Paulo: Abrasco; Fundo de População das Nações Unidas - UNFPA; 2005.. There is no need to review this literature which is widely available, especially in the form of critical disciplinary perspectives that deal with questions that go well beyond medicine itself⁶6. Santos Neto ETD, Alves KCG, Zorzal M, Lima RCD. Políticas de saúde materna no Brasil: os nexos com indicadores de saúde materno-infantil. Saude Soc. 2008; 17(2):107-19.^,77. Farah MFS. Gênero e políticas públicas. Estud Fem. 2004; 12(1):47-71.. What is most important is to call attention to the repeated questioning of this myth among feminist theorists whose aim is to revert the hierarchical and highly unequal valuing of the sexual division of labor which associates women with the family and with care⁸8. Hirata HS, Debert GG. Apresentação. Dossiê: gênero e cuidado. Cad Pagu. 2016; (46):7-15.^,99. Hirata HS. O desenvolvimento das políticas de cuidados em uma perspectiva comparada: França, Brasil e Japão. Rev Polit Publicas - UFMA. 2012:283-90.^,1010. Scavone L. Dar a vida e cuidar da vida: feminismo e ciências sociais. São Paulo: Unesp; 2004.. In this way feminist theorists include women in the interpretative and legal framework of modern individualism and equal rights for men and women, understanding that dedication to the private or the public sphere should be a question of choice and not an impostition of the sexual division of labor.

It is by way of these tense lines of interpretation¹¹11. Scott RP, Quadros MT, Rodrigues AC, Lira LC, Matos SS, Meira F, et al. A epidemia de Zika e as articulações das mães num campo tensionado entre feminismo, deficiência e cuidados. Cad Genero Diversidade. 2017; 3(2):73-92., that the experience of maternity and childhood is marked while following therapeutic itineraries that may, or may not, contribute to successfully face a quality of life that has been dilapidated by SCZ. “Therapeutic Itineraries” is a complex and holist concept¹²12. Gerhardt TE. Itinerários terapêuticos em situações de pobreza: diversidade e pluralidade. Cad Saude Publica. 2006; 22(11):2449-63.^,1313. Alves PC. Itinerário terapêutico e os nexus de significados da doença. Rev Cienc Soc. 2015; 42:29-43.^,1414. Pinho PA, Pereira PPG. Itinerários terapêuticos: trajetórias entrecruzadas na busca por cuidados. Interface (Botucatu). 2012; 16(41):435-47. which sheds light on searches, not restricted only to the medical field, by people who suffer from pathologies whose solutions seem either out of reach, or simply nonexistent. It helps focus on the signs the body produces and the multiple meanings and interpretations of such signs that are proportioned by diferent alternatives sought along the itinerary, providing frameworks for what might be judged relevant for understanding the life experience through which they are having to pass. The oft-heard therapy of “learning to live with the problem” suggests that the maximum that any path followed can bring in search for help, support or solutions is a partial or paliative act. That leaves things continually open to follow other paths. In the field of medical science a response to this multi-site search by those who suffer, is to value integral health, or simply, integrality, recognizing a diversity of possible contributions. Quality of life, even when desired, is the opposite of the insatisfaction provoked by the fact of having to live with a chronic disease, a degenerative disease, mental illness, persistent hypertension, sickle-cell anemia, disabilities, or other rare diseases and syndromes and hard-to-solve afflictions¹⁵15. Canesqui AM. Olhares socioantropológicos sobre os adoecidos crônicos. São Paulo: Hucitec/Fapesp; 2007.. Following a varied holist or integral therapeutic itinierary is not necessarily the result of an alternative philosophy of life, being better characterized as simply a search for a solution to some specific affliction. Such an itinerary has an extraordinary power to offer contrasting symbologies for the experience of different specific conditions, such as those of maternity/motherhood and childhood, focussed in this article.

Our idea of construction of notions about maternity and childhood along diverse therapeutic intineraries followed as a way of dealing with the consequences of SCZ requires an explanation about the understanding of how to approach disabilities. However complex and unknown the implications of SCZ for infant and child development may be, it is unquestionable that those implications are experienced as “deficiencies” in contexts which do not favor inclusion. The limiting implications of the biomedical priveleged usage of the concept of deficiency as an abnormality derived from a biological disadvantage shadow a more englobing understanding, known as the social model of disability, which conceives having a disability as “a bodily form of being in the world”¹⁶16. Diniz D. O que é deficiência? São Paulo: Brasiliense; 2007. (Coleção primeiros passos).. A symbolic and social reading of the practice of living with SCZ helps to formulate questions about created skills, as well as about exclusion, prejudice and demands of human rights. When Diniz¹⁶16. Diniz D. O que é deficiência? São Paulo: Brasiliense; 2007. (Coleção primeiros passos).^,1717. Diniz D, Barbosa L, Santos WRD. Deficiência, direitos humanos e justiça. Sur Rev Int Direitos Human. 2009; 6(11):65-78. deals with this theme she pays special attention to human subjects not usually conceived of as disabled (especially the elderly and caretakers) to enable her to develop an argument about a social world that brings together the relational repercussions of experiencing lesions, of promoting rights of women and of the elderly and of children. In short, being in the world cannot be restricted to being under the care of professional health workers; therefore, forming notions of maternity and childhood results from a myriad of possible focuses and wider understandings of social processes which make up the world of babies and children with SCZ and their caretakers, be they women or men. With so many ways of discussing perceptions of maternity and childhood it is necessary to choose a guiding idea for our observations. A life course described in generational terms, ever since the seminal work of Van Gennep, identifies a model of stages and phases of rites of passage for all societies in which people pass from one state and/or generation to another, from (pre)birth to post-life. The passage from one stage o another confers values to certain characteristics which mark changes upon the entrance to a new stage. We have questioned the linearity of such passages in previous work¹⁸18. Scott RP. Quase adulta, quase velha: porque antecipar as fases do ciclo vital? Interface (Botucatu). 2001; 5(8):61-72.^,1919. Scott RP. Gerações e famílias: polissemia, mudanças históricas e mobilidade. Soc Estado. 2010; 25:251-84., preferring to follow what Johnson-Hanks²2. Johnson-Hanks J. On the limits of life stages in ethnography: toward a theory of vital conjunctures. Am Anthropol. 2002; 104(3):865-80. calls “vital conjunctures” which permit the understanding of singular and special situations which may lead to stabilization in one stage or to inverted passages which do not obey expected sequencing. This is the exact phenomenon lived by a mother, hopeful that the birth of child will incarnate the expectation of being involved in a sequence of stages that contribute, passage by passage, to assert her qualities as a mother who knows how to bring up a child until she reaches the point of being an elderly mother who must be cared for by her child. An infant with SCZ-caused microcephaly presents a new “vital conjuncture” condition for the mother. The unexpected demands force a reelaboration of contents which convey different meanings to what might be expected as proper practice now that she is a mother of a newborn child with very special needs. Even if it annuls the expectation of linear passages, it demands all that a mother can give! As one mother said “It´s as if you just received a newborn baby and you have to care for a newborn baby all the rest of your life...”

This is when the practice of “caring” takes on far greater attributions than was imagined that it would have, and this caring is much more closely related to the idea of suffering. The first part of a common saying in Portuguese “Being a mother is suffering in Paradise” gains greater importance, and the second part “suffers” an uneasy question. Will it be an unending infancy? Will the child always be a baby? Thinking about who she is as a mother, and who her child with a potentially prolonged infancy is, establishes many possibilities of interpretations forged through therapeutic itineraries they will live together, from context to context.

It is a maternity with an amplified feeling of suffering, since it is impossible to dissociate the experience of disability from the emotion of suffering. According to Duarte¹1. Duarte LFD. Investigação antropológica sobre doença, sofrimento e perturbação: uma introdução In: Duarte LFD, Leal OF, organizadores. Doença, sofrimento, perturbação: perspectivas etnográficas. Rio de Janeiro: Fiocruz; 1998. p. 9-27., the theme of the value of suffering is a foundational condition of societies, and it permits access to “legitimate levels of social conditions”. It is exactly this condition of permitting “access to legitimate levels of social conditions” which introduces a key idea about how to overcome the diminished expectation of rewards coming from the experience of accompanying her child along his/her life course, sacralizing acts of caring. However limited and limiting it may be, such a sacralization can furnish a “legitimate” reward for her, but the construction of such a notion faces a series of setbacks during the process of caretaking. It is inevitable that, by way of the practice of caretaking, so firmly debated in feminist literature and in biomedical tradition, such an access to legitimate levels of social condition will occur in association with the adoption of practices of care related to mothering.

Methodological Routes

Since November of 2016, one year after the discovery of the peak of the epidemic in Recife in 2015, the two basic research concerns have been 1) to accompany the caretakers and their infants in their search for treatment and 2) to understand the organization of State services concerning SCZ from the standpoint of demands for treatment and care. Since we are emphasizing ethnographic research our researchers (13, as well as 6 more from 3 partner institutions), work closely with the two principal associations that bring together caretakers and children with SCZ, We use multifaceted data sources. Our registers include field diaries concerning daily observations from accompanying caretakers and infants and their relational networks formed in diverse spaces (home, health and therapy units, festivities, courses, associations, etc.) as well as doing deeper interviews with people in their networks and in State services. We assiduously attend seminars, workshops and events which present and discuss results of local and national research. All this is complemented by documental internet research and daily following of constant outcoming news about SCZ.

We use all these sources and have decided to protect personal and institutional identities in an effort to reinforce our intention to widen the comprehension of the phenomenon and to stimulate a fruitful exchange of ideas between providers and users of services, as well as researchers in the scientific community, without provoking specific constraints or accusations which might have negative repercussions. This decision does not annul critical atitudes and questioning stances which can contribute to mutual understanding and to more effective actions for all agents involved.

Caretakers, networks and itineraries

As is common knowledge in genealogical rearch, each relational network differs for each person chosen as the point of reference. It is also necessary to emphasize that in each social context for which information is sought there are different priorities for interaction and for meanings, creating many perspectives and possibilities of interpretation which vary in organization according to the involvement with the contexts. There is no intention to establish hierarchies of importance, of chronology, of efficiency or, of any other specific criteria seen while following therapeutic itineraries of the infants and their caretakers. What is sought is a greater comprehension of each context and how it contributes to the construction of complex notions of maternity and childhood.

Conclusions

Following therapeutic itineraries of caretakers of children with SCZ in this work neither had the intention of knowing their capacity to respond to a demand to solve health problems nor of evaluating health services. The intention was to ubnderstand how these routes contribute to a complex formation of ideas about maternity and childhood for women who follow them. These caretakers live a maternity that involves sacrifice and is of supreme value for them and for others, earned through dedication to their children in a radical change of their routines. They create a frustrating expectation that their child may not be able to overcome the harm inflicted on him/her by a little known pathology which promotes dependence at the same time that they participate in enviornments that enhance the sacralization of the attention demanded by their children for all that these children represent. These women are thrown into a highly publicized international whirlwind of commotions. This runs the spectrum from solidary acts by closely related people on their daily-life networks, all the way to international articulations involving governamental and non-governamental organizations active in finding solutions for SCZ-caused problems. In this way, the intensity and visibility of the vital conjuncture that they must face constructs a notion of maternity always associated with extreme dependence on a disabled child, rather than an experience leading to transitions out of childhood. In the most collective sense, their experience goes beyond that of other mothers with children with better-known disabilities, however rare they may be, that are out of the spotlights.

The external sacralization of attention to children occurs in function of what they represent as carriers of secrets to be discovered by Medical Science in its efforts to erradicate diseases and affirm the value of science and of prevention, as well as the image of the nation as able to face pathologies. Nevertheless it is not this sacralization that is important for the mothers, firmly concerned with living a positive maternity and kowing they are excellent caretakers. However many actions may be especially directed to the mothers, caretakers and children, and however sincere the sensitivity of many health professionals and other people, including all levels of civil servants, the symbolic violence suffered by them is severe. Several examples were given of violence in their neighborhoods stemming from the “diifference” of their child; the fragmentation of health services, of intersectoral social services and welfare services which repeatedly assert the poverty, incapacity of caretakers and subject them to enormous efforts; tests of patience and extenuating routines of mobility while hearing non-comforting, if not outrightly accusatory, words on their way to geting to therapeutic institutions!

The sociability they find in associations, which have become more visible with the onset of SCZ, identifies these as places where a maternal dedication opens up doors to overcome barriers and limitations in order to reach a “new level of social condition”, more strongly related to medical and social services, bringing them to act together with social movements and fronts which defend their interests, as well as getting involved in activities which generate income and resources, and participating in festive and enjoyable activities which allow them to think of themselves as valued beyond being caretakers. These are small victories in a flow of enormous and repeted difficulties!

Acknowledgements

Such a dynamic field of study offers many experiences of very important "collaboration" in the understanding of the subject; however, whether it be informality or excess of formality, may not be listed as collaborators, even when we recognize their contribution in the elaboration of our ideas and in access to research sites. For that reason we restrict the naming of our collaborators, beyond those who financed research and represent instituions cited in the text and footnotes, to researchers that collaborated more directly in our research despite even though they did not participate as authors in this text: At the University of Sussex, from the Institute of Development Studies (IDS) – Prof. Hayley MacGregor and Prof. Alexander Shankland; from the Centre for Cultures of Health, Reproduction and Technologies (CORTH), Prof. Maya Unnithan; at the Universidade de Brasilia, Departamento de Antropologia, Prof. Soraya Fleischer; at the Fundação Osvaldo Cruz, Escola Nacional de Saúde Pública, Prof. Jeni Vaitsman, Sandra Venâncio Siqueira; at the Universidade Federal Fluminense, Prof. Lenaura Lobato e at the Universidade Federal de Pernambuco, the administrative assistants, Jeíza Saraiva and Rafael Acioly. We thank CNPq, CAPES, FACEPE and the Newton Fund for financial aupport for the work.

References

Publication Dates

History