CAR CHIING LDR EN
for
On the River
Rita de Cรกcia Oenning da Silva and Kurt Shaw, Organizers
Results of the Baseline Study: The health of children in rural areas of the state of Amazonas
C
r e v i R e h t n o n e r d l i h C r o f aring
Results of the Baseline Study: The health of children in rural areas of the state of Amazonas
Organizers Authors
Rita de Cácia Oenning da Silva (Shine a Light/UFSC) Kurt Shaw (Shine a Light) Deise Lucy Oliveira Montardo (UFAM) Rita de Cácia Oenning da Silva (Shine a Light/UFSC) Kurt Shaw (Shine a Light) Georgia Silva (Ministério da Juventude) Rosillene Fonseca Pereira (UEA-São Gabriel) Inara Nascimento Taveres (UFAM-Benjamin Constant) Willas Dias da Costa (UFAM)
s r o s i v d A General dvisors Area A Financing
Marcos Antônio Pellegrini (UFRR) Maximiliano Loiola Ponte de Souza (UFAM-FioCruz) Theresa Menezes (UFAM) Maria Helena Oltolon (UFAM) Renato Athias (UFPE)
2013
Bernard Van Leer Foundation
Shaw, Kurt and Oenning da Silva, Rita de C谩cia (Orgs). Caring for Children on the River. Santa Fe, Floriano贸polis, and Manaus: Shine a Light e UFAM, 2013. Creative Commons 2.5 copyright, 2013. This book maybe copied and reproduced if recognition is given to the authors and publisher. Cover Design: Kurt Shaw Cover Photograph: Inara do Nascimento Tavares
s t n e t oC n
Table of Contents
Looking after kids: an introduction to research on Amazonian childcare practices
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Chapter 1: The production of the person and the health system in Amazonas Chapter 2 Health in Rural Areas of the Amazon: Anthropological Contributions Chapter 3: Data and Detours: Research on child health in the archives of the state
15 29 39
Chapter 4: Santa Isabel do Rio Negro Chapter 5: Lรกbrea Chapter 6: Atalaia do Norte
57 71 85
Chapter 7. Analyzing the data: Toward a Baseline for future evaluations Chapter 8. Film analysis Chapter 9: Eddies of Power: Health administration and local hierarchies in the Amazon Chapter 10: Proposals for Action
105 119 129 145
Biographies Bibliografia
155 159
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n o i t c u d o r t nI
Looking after kids: an introduction to research on Amazonian childcare practices
W
Rita de Cácia Oenning da Silva
hen we accepted the challenge to do a large research project on how families and institutions care for rural children in the state of Anazonas, I was with my family in São Gabriel da Cachoeira along the Upper Rio Negro, researching children's performance and narrative. It was October, 2012. It is with an example I heard there that I would like to introduce this book. I heard many stories from a Tariano family who had moved from Iaueretê to the Tiago Montalvo neighborhood in São Gabriel, and many of them dealt with how to conceive and care for a tariano. These precautions and prescriptions start with conception and go on for years, both building the child within the culture and keeping the culture together and coherent. Seu Fernando, Dona Bernadete, their daughters Iauareté is a town situated indie the Upper Rio Negro Hildete, Isoneia, and I talked over these issues for Indigenous Reserve on the border with Colombia, between the Uaupés and Papuri rivers. It plays an impoprtant role in many hours over the months we were in São Gabriel. indigenous narratives and myths, being called the "jaguar waterfall." Dona Bernadete explained that when they In this place the Diorã taught several indigenous groups how to were first married, she and her husband had three practice shamanism; the areas is now inhabited by the Tarianos, babies who died one after the other when they Tukanos, Tuyukas, Hup'ta, Pira-tabuia, Wanasno, and Arapasso, among other indigenous groups. were still tiny. During those years, the Tukano and Tarianao people in Iauaretê had been the target for intense missionary activities to force the indians to stop their traditional practices and religious activities. Dona Bernadete said that her fourth child also looked like she would die in the first days of her life. A family member was visiting them at the time and recommended that Bernadete see if
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book one day and burned it, for she saw how this war was destroying her husband and family. Fernando's magical ability had not gone unnoticed, however. His father in law, a Tukano, trained him in blessing instead of cursing. In this way, he learned to protect his children even before their birth; he still uses this knowledge every day. People often come to consult him in São Gabriel, where he provides his blessings for free, accepting only a gift at the end as a way to close the circuit of reciprocity (Wright 2005, Garnello 2013). Dona Bernadete, looking back over that difficult time, says that their real mistake was to give up the wisdom of their ancestors to trust in the medicine of the Salesian nurses.
Santa Isabel doRio Negro 4
Foto: Rita de Cácia Oenning da Silva
"this wasn't really a case for a rezador." (A reazdor, literally a "prayer" practices a traditional form of medicine in the Amazon, surrounding the child with ritual protection and often prescribing herbal medicine and other folk remedies) Until that time, Bernadete had always taken her babies to the salesian sisters for care, but they had always died. Gerardo Andrello, one of the most important A shaman came to the researchers in the region, explains "Both family home and told them protestant and catholic missionaries how to care for the child. He considered the big house, the rituals, and the flutes of the Jurupari to be Satanic elements explained that the family had that had to be torn from indigenous life." been the victim of witchcraft Since the 1920s, Iauaretê, where Seu Fernando they were and his family came from, has been the center because remnants of one of the of this effort as a seat for one of the Salesian missions. It was a "catechesis and civilization last important Tariano center" where indians were forced to tear families in Iauaretê. The down their big houses, give up their Tarianos, an aruak group ceremonial relics, and abandon their rituals. living largely among In the 1980s, all that was left of the Tariano Indians were four small communities built Tukano speakers, are around the salesian mission (Andrello called "Sons of the undated, 3) Lightning" and considered to be powerful and dangerous warriors; they play an important role in the mythology shared among 22 or more ethnic groups in the upper Rio Negro. Dona Bernadete followed the shaman's advice, and her sick child pulled through. The couple now have four children -- three daughters and a son -- and several grandchildren. To avenge the death of his first children, Seu Fernando found a book on Tariano witchcraft and began to practice it. he told me that he "waged and suffered an invisible war" to defend himself from his enemies. No one will say publicly that he is a witch, explained Seu Fernando, but the results are evident to everyone, so it was not always easy to tell who his enemies were. Dona Bernadete found the sorcery
Every culture develops ways to care for its children. No people could survive without techniques to safeguard and form children, and many cultures begin these precautions even before a child is conceived, as they prepare the parents and the community for the arrival of new members. From the first days of anthropology in the Amazon, visitors have remarked on the special care that the natives put into childcare. Thedor KochGrünberg, who traveled through the northern Amazon in 1903, described the way that an arawak-speaking Kobéua family prepared a place for a new being in the world. They needed to follow certain precautions to avoid illness in the baby: Even before he arrives in the world, the baby enjoys the care of mother and father. Beginning one month before birth, a Kubéua woman may eat any bird or fish except the pirarára, which could harm the baby in many ways. Quadrupeds, especially the tapir, the capybara, and the deer are all strictly prohibited. A closely regulated diet is one of the ways that indigenous people avoid illness. (2011, 484)
It is the mother and father who must take special care for their diet and activities during pregnancy and the first months of a child's life. Amazonian indigenous people see small children and parents as cosubstancial: they share the same substance, so what happens to the parents also happens to the child. Koch-Grünberg observed this idea among almost all of the peoples he observed, though always noting small differences among them. Things that enter parents' bodies, excess effort, proscribed sexual acts, prohibited activities, contact with some animals, and even the weather could all affect the fetus and then the small baby through his or her parents. Only after some months of life, when the body of the child has "closed", will the baby be ready for new challenges in relation to the world. After a child can eat alone, new proscriptions emerge as a way to protect the child in a new phase. These practices protect the child in symbolic and physical ways, but they also strengthen the group by cementing ritual practices and common beliefs and actions. Care to get children through the first years of their life is certainly universal. The details and the understanding of this care, however, are not
universal. Each group defines the techniques necessary to form and socialize a new being, even as these ideas are shared and exchanged with other cultures and social actors. The Amazon is a network of ideas and trade, and though some groups have chosen to seclude themselves from national culture, they still relate to other indigenous groups and learn from traders and intermarriage. We also see that all cultures relate these practice of childcare and childrearing to the idea of what it means to be a person and how one constructs a person. In other words, communities use these practices with the goal of producing people based upon their ideals. Each group will, of course, do this in its own way. As Geertz points out, "People are, more than anything else, varied… being a human is not to be Everyman or Anyman, but to be this particular type of man. And without doubt, men differ." (1989, 64-65) Geertz insists that humanity is not only varied in its expressions, but also in its essence. Even Western biomedicine, seeing health only through the eyes of biology, has come to see the way that care and precautions for the person impact genetics and the body. Moshe Szyf and Patrick O. McGowan (2010) at McGill have drawn quite a bit of attention as they have shown how habits and environment can change even RNA replication. Experience does not modify the actual genetic code, but it does change the way that it functions and relates to protein and enzyme production, thus having a long-term and profound effect on behavior and biology. These changes and dynamics occur in utero as well, meaning that care for the fetus before birth is, in fact, essential to childcare (Syzf and McGowan, 2010). “An organism's behavioral and physiological and social milieu influence and are influenced by the epigenome, which is composed predominantly of chromatin and the covalent modification of DNA by methylation. Epigenetic patterns are sculpted during development to shape the diversity of gene expression programs in the organism. In contrast to the genetic sequence, which is determined by inheritance and is virtually identical in all tissues, the epigenetic pattern varies from cell type to cell type and is potentially dynamic throughout life. It is postulated here that different environmental exposures, including early parental care, could impact epigenetic patterns, with important implications for mental health in humans. Because epigenetic programming defines the state of
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This book looks at how families and institutions in the rural Amazon create and care for people -- in this case, very small people -- before their fifth birthday. It presents the results of the Baseline Project "Children's Health in rural areas of the state of Amazonas," developed by Shine a Light in collaboration with the Anthropology Department at the Federal University of Amazonas (PPGASUFAM) and financed by the Bernard Van Leer Foundation. It strives to understand how children are cared for along the rivers of Amazonas, first by their families and communities, and then by public services. We conducted the research in three rural municipalities -- Lรกbrea, Santa Isabel do Rio Negro, and Atalaia do Norte -- and found both commonalties and differences among these areas. We have tried to understand how and what children eat in different moments of their growth, the path that they take to a cure (the therapeutic itinerary), access to potable water, sewage and waste, the most common illnesses they face, the dynamics of daily childcare, healthcare before, during, and after childbirth, community involvement in childcare, access to the formal medical system, perception of the quality of healthcare for children and pregnant mothers, the games and play of small children, and other issues. We have always taken care to understand the inter-dynamics of traditional, family, and community health- and childcare, as well as services now offered by the state and other institutions. In this way, we offer data for a Baseline to measure and evaluate
Santa Isabel doRio Negro
Foto: Rita de Cรกcia Oenning da Silva
expression of genes, epigenetic differences could have the same consequences as genetic polymorphisms. Yet in contrast to genetic sequence differences, epigenetic alterations are potentially reversible.(Szyf e McGowan, 2010).
future actions in the state of Amazonas to provide better access to healthcare and better support for families. We offer quantitative and qualitative data in order to understand the different contexts in which children are cared for, a subject that has, until now, been little studied in the Amazon. In order to reflect on this information, we have largely used tools from anthropology, working to understand the point of view of families that live along the remote rivers of the state. We have used official statistics from the DataSUS, the Brazilian census, and other government sources, but the most important numbers emerge from the more than 300 interviews with families with more than 500 small children in the three municipalities we
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researched. This is the basic source for constructing the Baseline. The results of this study emerge in the following chapters.
h c r a e s e The R
The Research
In often to understand how families in the rural Amazon care for their small children, we needed to understand the diverse local ideas about health and wellness, and then how the families connect to supports and healthcare offered by the government. For this reason, the baseline research was developed in many different communities in the three municipalities. The foundation of the study are more than 300 interviews with mothers and fathers, accounting for more than 500 children under five years old. The interview was based on a questionnaire seeking both qualitative and quantitative answers. We also used open interviews, focal groups, and conversations with leaders, civil servants, shamans, health agents, teachers, and others who understood the health care needs of the community.. The questions were developed by the research team as a whole in a week of meetings before the study began. In Santa Isabel do Rio Negro, the study was developed in many small villages -- Tabocal do Uneuixi, Matozinho, Areal, Chile, Maricota, Boa Vista, Uábada II, Cartucho, Tayaçu (São João II), Massarabi -- and in the neighborhoods of São José and São Judas in town. The first four villages are indigenous, but lie outside of formal reservations; the six other villages are inside the First and Second Middle Rio Negro Reservations. These villages are multiethnic, with individuals and families who identified themselves as coming from 12 different tribes: Baré, Baniwa, Dessano, Piratapuia, Arapasso, Tariano, Tukano, Tuyuka, Yanomami, Karapanã, Kuiawï (previously called the Nadëb). Each community elects an administrator --
the reference point for relationships with visitor and the government -- and has a health agent and some school teachers. Santa Isabel is part of the North Amazonas meso-region and the Rio Negro micro-region. The census records 19, 292 inhabitants, 90% of which are indigenous. There are many missionaries in the area, especially salesian catholics. Santa Isabel covers an immense areas (62,846,237 square km), but even the distant population keeps a close connection with the town center, whether going there to sell agricultural products (manioc, sugar cane, pineapple), to buy industrial goods, to use medical services, or to get access to government benefits. Rural to town migration has grown recently as families look for better education and better access to the health system. The health care in the villages we researched is conducted by the Special Indigenous Health District DSEI) of the Middle Rio Negro, with a health team in the town of Santa Isabel. In Lábrea, interviews were conducted in the Fonte neighborhood and in the rural community of São Paulo, 12 hours up the Purus River from town. Researchers talked with 88 families responsible for 151 children under 5, speaking with whomever was in the house caring for the children. To facilitate the research, we collaborated with many local organizations and associations, including Focimp (Federação das Organizações Indígenas do Médio Purus), Cimi (Conselho Indigenista Missionário), OMIMP (Organização das Mulheres Indígenas do Médio Purus), Dioceses of Lábrea through the Pastoral da Criança, Paumari e Apurinã indians, the Secretaria de Saúde of Lábrea, and leaders of the Bairro da Fonte/Terra Solidária and the Comunidade São Paulo. In contrast with the other regions researched in this study, the south of Amazonas has a much longer history of colonization and integration with the world economy. The Purus and Madeira rivers were a key part of the rubber boom at the end of the 19th century, which brought a temporary prosperity, but also led to the massacre of many indigenous groups. As a consequence of this history, we see extraordinary inequality in the city.
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Lรกbrea sits along the edge of the growing deforestation frontier coming from the south of the Amazon, causing deadly conflicts between traditional people and lumber and ranching interests. Land tenure is extremely complex, and even land reform settlements organized by the government are harassed and threatened by death squads. Media and prosecutors regularly accuse local politicians of corruption especially with education and health funds. Rural areas are annually flooded, but the most dramatic threat to public health is the Black Fever of Lรกbrea, now called Hepatitis Delta, which first emerged in the area several decades ago. The majority of victims are boys and young men.
s a n o z a m A
Researched Communities
and caboclo populations, and digestive illnesses cause malnutrition and death. The health system in the municipality has not functioned well for many years, making it impossible for people in the region to cure illnesses that would be much more easily addressed in other parts of the country. The research in Atalaia focussed on rural families that have either migrated to or are passing though the town center, where they are explosed to new germs and viruses. Atalaia and the neighboring towns (Benjamim Constant and Tabatinga in Brazil, Leticia in Colombia and Santa Rosa in Peru) also have to deal with the dangers of a triple border, where guerrillas and criminal groups dispute power and militarize daily Santa Isabel do Rio Negro life.
In addition to families living in the town of Atalaia do Norte, we also studied two rural communities in the municipality: the Kokama indian settlement of Sรฃo Pedro do Norte and the Atalaia do Norte Assentamento do Boiรก. We also interviewed Mayuruna, Matis, and Kanamari families passing through Lรกbrea town to access government services. The study occurred in April, May, and June of 2013, with interviews of 150 families who had 219 children under 5 years old. Epidemiologists and health professionals recognize that the Vale do Javari, an immense and largely undocumented region, suffers one of the most severe health cries in Brazil today. Epidemic levels of malaria and hepatitis have decimated indigenous
Rural Communities Municipal Center Research Center
Archival research was done by Georgia Silva, who examined government databases to find evidence of health and wellness for small children. She then compared these statistics with those supplied by the municipalities to compare different data sources.
We engage in a careful analysis of the data derive in all of these research areas. None the less, the research was primarily anthropological, examining not only the numbers, but also the meanings of health and wellness for the families who participated. This method demands more than interviews, but a real effort to live with the community and to understand and observe its
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quotidian practices, as well as people's thinking outside of the constraints of the interviews. This ethnographic observation was, unfortunately, quite brief due to the project deadline; though we do not have the luxury of providing a dense description (Geertz 1989), this time in the field does allow for a good description and analysis of the way people in each community view health. The analysis is varied, depending upon the skills and interests of each area researcher, but the final result -- in written, photographed, and video form -teaches much about the current situation of children in the region and the way that their families and communities understand health and illness. We chose the three Though this research uses data and municipalities to be researched for statistics as a way to understand several reasons: geography and childcare in the region, it is not a formal epidemiological study. The selection of difficulty of access, foci of endemic the sample, for instance, is not random illness, obvious cultual and as would be demanded by formal economic conflict, difficulties in epidemiology. access to the health system, and extreme poverty. The research areas were chosen not because of their representativity nor as a random sample, but as a way to illustrate some of the most serious problems that any health policy must address. If public policy can deal with the issues in these three municipalities, it should be able to deal with less complicated areas as well. From the first days of the research project, we have worried about the representativity of the sample. As such, when we first calculated the results and found that more that 80% of the families in each municipality receive the Bolsa Familia, a government benefit conceded only to families in extreme poverty, we began to worry that we might be looking at a particularly excluded -- and therefor non-representative -- subset of the population. It is interesting, then, to cross-reference statistics from the census with statistics from the Bolsa Família. In Atalaia do Norte, for instance, the IBGE registers 2885 homes; according to the Bolsa Família, 1945 (67%) of these get the benefit. In Lábrea, even more families get the Bolsa Família, and in Santa Isabel, the number rises to 78%, almost exactly
the percentage found in our research. Given that we only interviewed families with children between 0-5, which skews our data set low, we can say that though the families we interviewed are extremely poor, so are almost all of the families in these three municipalities. Within each municipality, researchers chose the groups to be studied based on a number of criteria: previous access to the communities, cultural diversity (caboclos, indigenous people, blacks, migrants, etc), and the group's willingness to participate. In all cases, researchers first visited the communities to speak with leaders and some families, and sometimes with a meeting of the entire village or community. We only continued with the research if all involved would accept. The support of local institutions was important in ever case study: in Santa Isabel we counted on the help of the foram FOIRN -- Federação das Organizações Indígenas do Rio Negro -and the Associação das Comunidades Indígenas do Rio Negro (ACIR), CAIBRN. In Lábrea, we have already commented on important collaborations with various associations, and in Atalaia we are thankful for the support of the União dos Povos Indígenas do Vale do Javari – UNIVAJA, and its sub-associations like the Organização Geral do Povo Mayuruna – OGM, Associação Marúbo de São Sebastião – AMAS, and the Associação Geral dos Povos Kanamary do Vale do Javari – AKAVAJA, all indigenous organizations. In addition to the formal approval of all of these representative organizations, we arranged for the local mayor or a representative to approve the presence of the researchers in the field. We registered the research on the Plataforma Brasil, a national database of studies involving human subjects organized by the National Ethics-in-Research System (SISNEP) in order to be evaluated by the Ethics Committee at the UFAM and by the National Research Ethics Board (CONEP). The project received a positive review in the region. We are awaiting a final decision by the CONEP.
In the Index of Human Development produced by the United Nations, we see that Santa Isabel and Atalaia are among the least developed in the country. Atalaia is the third poorest municipality in the country and Santa Isabel the 11th. They are the two poorest in Amazonas. Lábrea is only a little higher on the list, but still in the 5% of poorest towns in Brazil. (Atlas da ONU)
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Each of these area researchers was supported by an outside advisor, who read the text and suggested changes. In Lábrea, Willas da Costa had the constant support of Thereza Menezes, the UFAM professor who coordinates research along the Purus. In Atalaia do Norte, Inara counted on the help of Maria Helena Oltolon, also a professor at the UFAM and a specialist on the Vale do Javari. In Santa Isabel, Rosilene Fonseca was advised by Renato Athias, professor at the Federal University of Pernambuco and one of the greatest national specialists on Maku ethnic groups. Each area researcher also had the funds to hire a local assistant or assistants, and a boatman to move along the rivers. Each researcher could choose his or her own assistant, based on the needs in that particular field study. In Lábrea, for instance, Willas hired another UFAM graduate student, Rancejânio Guimarães, knowing that he knew and understood local people well. In Santa Isabel, Rosilene hired four assistants for different phases of the research: Elio F.Pereira, a Piratapuia indian with a Masters in Education from the Pontífica Universidade Católica
Daughtersof memthbeeRirsofo tNehergersoearch teamswim in 10
Foto: Rita de Cácia Oenning da Silva
Area researchers were chosen based on their previous insertion in the region: we needed people who were already working in the area and understood local dynamics and local people. This eased issues of contact and consent in each region, an important issue for a project with such a short deadline. Some academics have justly criticized short term research project as being unable to faithfully represent the complexity of remote areas (Minayo and Coimbra, 2005), but by working with researchers already on the ground, we largely overcame this serious problem. The researcher in Santa Isabel was Rosilene Fonseca Pereia, MA in Anthropology from the UFAM and a Waikana Indian born and raised in Santa Isabel. Rosilene defended her masters thesis, a history of changes in childhood in her tribe, in 2013. In Lábrea, the lead researcher was Willas Dias da Costa, a doctoral student at the UFAM and a member of the team for the New Cartography of the Amazon who had long worked in Lábrea. Inara Nascimento Tavares led the research team in Atalaia do Norte. Inara has an MA in Anthropology from the UFAM, has long researched in the region, and was, at the time of the research, assistant professor of Anthropology at the regional campus of the UFAM.
in São Paulo, lma Fernandes Nery, also a Piratapuia, with a diploma in Indigenous Project Management and an MA in arts from the UFAM, Eliana Saldanha Pedrosa, an Arapaço indian who managed many projects for the FOIRN and has an MS in non-profit administration from the Salesian University of Amazonas, , and Elzamar Cordeiro Venâncio, a Tukano with a degree in Dental Hygiene. Finally, Inara Nascimento contracted three locals to help her: Chapu Matis, a Matis indian youth; Charles Siqueira, a recent graduate of the UFAM in anthropology, and Gildete Félix, studying for her BS in education and the cook at the local high school. The team was led by: 1. Kurt Shaw, who has a BA in Philosophy from Williams and a Masters in Classical Languages from Harvard; he is the founder and director of Shine a Light. 2. Rita de Cácia Oenning da Silva, PhD in Anthropology from the Federal University of Santa Catarina, Postdoctoral Fellow in the Anthropology Department at the UFSC, and co-director of Shine a Light 3. Deise Lucy Oliveira Montardo, Chair of the Anthropology Department at the UFAM and coordinator of research for the Brasil Plural Think Tank. The coordinators brought together the research team, designed the research model, advised the researchers in the field, organized two conferences for the participants in Manaus, brought the project to the Ethics Committee, and wrote the final version of this book. Shine a Light administered the finances for the project and did the accounting work. The general structure of the project was advised by two nationally recognized experts on Amazonian healthcare and epidemiology, who worked with us to develop the research model, to understand the results, and to revise the final text. Maximiliano Loiola Ponte da Souza won his doctorate from the
Oswaldo Cruz Institute and is now a researcher for the Amazonian branch of that governmental organization. He is a specialist in Collective Health, with an emphasis in the Social Sciences of Health. He currently researches indigenous health, the anthropology of health, and mental health. Maximilaino participated in the first conference that organized this research project and helped to design the model; he has helped with every step from that time. Marcos Pellegrini has his MD from the prestigious University of São Paulo, and then MA and PhD in anthropology from the UFSC. He has a vast background in planning and organizing health systems for indigenous populations in the Amazon. He is currently a professor in the medical school of the Federal University of Roraima, where he also gives classes in Anthropology. His research ranges across Health Anthropology, Ethnology, and Indigenous Health. Marcos participated in the second conference for this project and his assistance was essential in the data analysis and the crossreferencing of statistics from the three area researchers with official data. The research project also proposed to produce audio-visual material to help understand and express the health needs and concerns of families who live along the rivers of the Amazon. Kurt Shaw and Rita de Cácia Oenning da Silva were in charge of this part of the research project: Kurt filmed in all three areas, Rita in Santa Isabel do Rio Negro. The videos were always filmed by children (and in some case, helped by adults) in each region. Ethics is a central issue in any video project. We do not simply ask for a release to be filled out: local people take the camera in their hands, select the subject they wish to film, choose the manner in which they want to film, and make the movies themselves. In this way, local people show what they believe to be important. Children, excited by the new technology, are often the first to learn to use the camera. Because each community is different, the films each group made vary in style, theme, and quality. In Santa Isabel, children generally chose to film themselves and their daily activities and stories. In Lábrea and Atalaia, they
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Caring for Children on the River: results of a baseline study on the health of rural children in the state of Amazonas, is divided into ten chapters. The first chapter, "The Construction of the person in Amazonas, and its relation to the health system," written by Rita da Silva, begins with
ideas and world views held in common by different groups we studied. Ideas of personhood, the concept of the body, the care of the self, and the relation of cosmology to health are essential issues that one must understand before proposing to modify public policy in the region. da Silva examines the diversity of health and childcare systems in the Amazon, seeing them as semantic networks. She emphasizes the need for real and respectful dialogue between diverse systems of knowledge and power as way to develop new strategies for healthcare along the rivers. In the second chapter, "Health in Rural Areas of the Amazon: contributions from anthropology," Deise Lucy Montardo revises the bibliography on the anthropology of health in indigenous and cabolco communities. Her synthesis shows that rural people in the Amazon conceive of health and heal sickness in a dramatically different way from European medicine, and that few reform proposals have taken these differences into account. In the third chapter, "On Data and Detours," Georgia Silva first relates the history of health reform for children in Brazil. She then moves on to transmtit and discuss the data in public archives, dividing them by
Rio Javari
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Foto: Inara do Nacimento Tavares
more often filmed stories that their parents wanted to tell. In all cases, what the people have to say and what they choose to show teaches us quite a lot about the daily life and health of children in the rural Amazon. Chapter Eight gives a detailed analysis of all of the films that accompany this book. Video production allows local communities to speak in a way that can be heard in academic and policy circles, something that would be uncommon without the tool. It also opens the opportunity for a counter-gift by which the researchers thank the participants for their help. Rouch (1979) and Peixoto (1994) point out the importance of showing the film to the community that helped to make it. Once the films are completed, we return them to the communities so that they can see and evaluate the way we edited the work they have done. Seven films were finalized for this project: Cuidando da Gente (Tabocal/ Santa Isabel do Rio Negro), Escrito na areia (Tabocal/ Santa Isabel do Rio Negro), O agente de Saúde (Comunidade de São Paulo/ Lábrea), Sou Bilingue (Bairro da Fonte, Lábrea), O boto sequestrador (Beira Rio/Lábrea), O Rezador (Bairro da Ponte/Atalaia do Norte), Banhos (Bairro da Ponte/ Atalaia do Norte).
contributes an analysis of the seven films made during the research process. In chapter nine, "Eddies of Power," Kurt Shaw reflects on hierarchy and power in the Amazon, proposing a theory to show how public health has become a legitimating force for nefarious leaders. He shows how the Amazonian philosophy of leadership joined with federalism to facilitate and even promote corruption and inefficiency in the healthcare system. The final chapter brings together a series of proposals for action that emerged from the research. These proposals range from the tiny to the utopian, but we believe that all are possible and effective ways to improve healthcare and childcare for rural Amazonian children. As we have stated before, we focus throughout this book on the care given to children younger that five years old. We chose this age group for two reasons: first, the Van Leer Foundation wishes to invest in care for small children. Second, the government uses the category of birth to 4 years, 11
Givingfilmsback to thecommunity: SĂŁoGabriel daCachoeira 13
Foto: Kurt Shaw
region and by municipality. The great contribution of this chapter is the thoughtful critique that Silva offers of data collection systems and practices. For instance, one of the most important statistics for the formulation of public policy on children, infant mortality, turns out to be extremely unreliable in rural Amazonas. By showing how data are collected, the chapter allows us to understand where and why they fail‌ and where they are, in fact, useful. The next three chapters relate the case studies in three municipalities, looking at dynamics and statistics on the ground. Chapter four examines Santa Isabel, chapter five focusses on Låbrea, and chapter six on Atalaia do Norte. The seventh chapter brings together the data from the previous four, cross-reverencing and comparing the data to provide a global analysis of the strengths and problems of child care and health care in the state. Here, we develop the statistics which are the essence of the baseline. Chapter nine
months, and 30 days old as its smallest division; as such, to compare our data with that of the state, it was important to use this age group. We remember, however, that childcare is not so easily grouped into ages or regions, and that children move back and forth between many roles in health and childcare. Caring for children is not just about kids until their fifth birthday: it involves the dynamics of complex community life.
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1 r e t p a hC
The production of the person and the health system in Amazonas
W
Rita de Cรกcia Oenning da Silva
hen we examine the anthropological literature on the peoples of the Amazon (Garnelo, 2003; Langdon, 2004; Pelegrini, 2004; Athias, Cesarino, 2011, 2008; Pereira; 2013; Athias, 2003; Ochoa, 2004), we see that they share certain categories and notions which we need to understand before beginning to think about care for children in the state of Amazonas. One cannot talk about childhood in the region without reference to the notion of the person, the Amazonian vision of the world, the local idea of cure; we need these ideas in order to understand the idea of health and healthcare in that context. I do not wish to examine these ideas for every indigenous and ribeirinho group we studied for this book, since that effort would demand much more work and space than we are capable of in this short research project. I do want to draw attention to studies done on groups in the region that help to elucidate the information and data we gathered in our own research in Atalaia do Norte, Santa Isabel do Rio Negro, and Lรกbrea. The notion of what it means to be a person has been a topic of anthropology since its origins. Marcel Mauss ([1938] 2003) began reflection on the subject when he tried to develop a genealogy of the notion of "person", showing it to be a notion that is historically constructed in any given society. "The idea of the person, the idea of an I, deals with categories of the human spirit. We all believe it to be natural and clearly defined in the depths of our conscience, a perfect basis for the moral world that emerges from it," (2003:369) but Mauss wishes to show that this "clear idea" is, in fact, a historical construction. Just like the idea of human rights, a recent development in the history of human though, the person would also be a historical artifact, the product of social relations and the human imagination. Louis Dumont (1885[1983]), largely following Mauss, tried to understand the divisions between the individual and society in the Indian caste structure, comparing it to modern European ideas of the same division. In
15
this way, he proposes a genealogy of the individual: individualism is a dominant modern value largely in contradiction to the "holism" valued by more traditional societies. Bronislaw Malinowsky directed his attention to how the care that the Trobrianders of Melanesia invested in their children developed the sense of person in this new members of the community. He was particularly concerned with reproduction and procreation, so he looked carefully at how people understood fertility, sexual life, and rites of passage. (1922, 129, inter alia) He also studied the same themes in the Mailu islands in 1914, looking at beliefs and customs around procreation and pregnancy. (1914:1948) Margaret Mead, studying in the same area of the world (Bali), looked more carefully at how the social practices of a group actually formed the way that a body is moved, molded, and lived in. Using these ideas from Dumont and Mauss, and then putting them in dialogue with new ethnographies of the people in lowland South America, Anthony Seeger, Roberto da Matta and Eduardo Viveiros de Castro showed in their article "The construction of the person in indigenous societies" (1979) that this concept of the person centers much of the thinking and social structure of native Amazonian groups. The text marks a transformation of Brazilian anthropology, pointing it toward reflection on the body as a key element in the elaboration of cosmology: "This emphasis on corporeality is found in the middle of a wider concern for the definition and production of the person by society." (1979:03) "The physical production of individuals is inserted in a context that always looks at the social construction of the person, which is to say, members of a specific society. The body, as we westerners define it, is not the only object (or instrument) society has to involve itself in the building of the individual: we also see naming practices, ceremonial identities, theories of the soul: all of these are associated with the way that different tribal groups understand the human being. The body, affirmed or negated, painted and perforated, secluded or eaten, always plays a central role in indigenous ideas about the nature of the human being." (1979:04)
Many authors before and after this inaugural text have noted the peculiarity of the idea of the body in native Brazilian
though, thinking of specific rituals, shamanistic techniques (blessing, recovering the soul of the sick man, sucking out an illness), corporeal practices (painting, masks, piercings, seclusion), songs, narratives, and many other activities. In this context, the person is an interrelated being, not an individual. Unlike the modern individual described by Dumont, the person in Amazonian culture exists because his other exists, because his social group made him. Amazonian ethnographies show how these corporeal practices are both essential and remarkably diverse in the process of constructing a person: they are the precautions and actions one must take in order to make a human member of a society. These practices involve theories and actions to conceive babies, a theory of illness, the role of bodily fluids in social symbolism, food prohibitions, body ornaments, and many other things. (Seeger et all 1979, 03) Myth, ceremonial life, and social organization all rotate around these practices of fabrication, decoration, transformation, and destruction of the body. "The physiology of body fluids -- blood, semen -and the process by which the body communicates with the world -- food, sex, speech, the senses -- seem to underly the considerable variation we see in South American societies." (1979, 11) Among the studies the authors cite are many on the Tukano of the Rio Negro (many of whom participated in our research in Santa Isabel), who "offer a clear example of how a group uses body and sexual symbolism to think the society and the cosmos." (1979, 11). More recent studies have shown how important it is to think the interconnection between I refer here to the bibliography cited by Seeger et all, such as perceptive codes Reichel-Domantoff's work on the Desana, Croxker on the Bororo, and and Overing-Kaplan on the Piaroa of Venezuela, among others epistemologies (Seeger et al 1979, 3). The vast recent work on agency, the self, the person, corporeality, alterity, and Shamanism in Lowland South (sound, sight, America has been excellent. To cite some authors: Anthony Seeger, smell, taste) to Elsje Maria Lagrou, Jean-Pierre Chaumeil, Robin Wright, Philippe find how art and Erikson, Marco Antonio Gonรงalves, Eduardo Viveiros de Castro, beauty build a Renato Athias, Sonia Maluf, Rafael Menezes de Bastos, Jean Langdon, Laura Perez Gil, Pedro Cesarino, Luiza Garnelo way that people
16
university educated medical professionals. In many of the indigenous and ribeirinho groups we studied, the child is understood as a novice who -- just like an adult who is learning -needs careful control and constant investment in order to educate him or her in how to move in these natural and supernatural worlds. In all three areas we studied, we heard the phrase "to close the body" as one of the most important parts of childrearing and child health. Viveiros de Castro points out that "among the ArawetĂŠ, a child is born with an open body, and paternal substances penetrate h/er body. Blessings must be repeated for many months and at any sign of illness, and they will be even more important when the parents begin sexual activity again, or begin to drink manioc beer." (1986, 447) Rosilene Fonseca Pereira is both a Waikhana indian and a trained anthropologist; in her masters dissertation, she looks at the peculiar way that her extended family deals with issues of childrearing, showing how children are cared for from the moment they are conceived until they are born. "Birth is understood as a passage from a good world to a dirty world full of sickness. The family must prepare a place with bharceyĂŠ (the complex of blessings and sacred narratives) where the baby will
Santa Isabel doRio Negro 17
Foto: Rita de CĂĄcia Oenning da Silva
see themselves and fabricate their identity (Lagrou, 2007; Montardo e Wilde, 2011; Cesarino, 2011; Menezes de Bastos, 2007, 2006 ; Silva, 2013). Where westerners often think of art as a form by which individuals express themselves, in the Amazon art is a way in which people construct themselves, society constructs them, and they construct society. Even such basic biological functions as eating and sex are related to the building of social networks, as we see in the concept of consubstanciality. We seem to see in many of these ethnic groups the idea that the body is fluid, that flows of substances, things, and forces enter and leave the body and radically affect the being and state of a person. We see worry about withccraft, magic, the gaze of the other: breaking social rules can harm the health of person and her neighbors and even cause death. Health and illness are not about the internal functioning of an individual body, but the relations between many people. As such, health demands constant personal and social control. The construction of the person is relational, not only with other people, but with other natural and supernatural beings, meaning that maintaining health involves relations with animals, humors, and the substances that make up the cosmos. Clearly, this idea of the body is not shared by most
be protected from evil things. During the whole pregnancy, the maternal and paternal grandparents will share this information with the parents of the coming baby." (Pereira 2013:49) "The bharceyé is considered an immensely important protection that will accompany the little waikhana from the creation of the world through birth, the process of the formation of a nirhinonrriré (the name given for a person from birth until 14 years) and then on to adulthood, wedding alliances, migration through the jungle into new streams, rivers, and new places with new dangers. It protects when a person creates new farms, builds a home, travels on the river, or even makes domestic tools." (Pereira 2013:49)
If the family does not take these ritual actions, the child may die, since "without a bherceyé immediately after the birth of a child, the hiorkiêmarsawirirhê will be furious and make noise so that the ear shakes, and the whaimarsãwirriré, the beings of water, will come to take the baby." (2013:55) In other cultures studied in this research, we often see reference to the danger of the evil eye, caused by envy and hunger, often even when the guilty party doesn't want to do it. The evil eye is another motive for "closing the body" of the baby so that these evil flows (the gaze, objects, liquids, spirits, strange substances) can no longer enter the body to disturb health. Chupadores or "suckers" are a medical specialist in the area: they suck these strange substances from the body to return it to health. They mediate between worlds as a way to negotiate a cure. Other recent studies in the Amazons offer important resources for understanding the results of our research, showing how complicated the notion of the person, health, and childhood are for people who live in the region. (Pereira, 2013; Cesarino; 2011; Ochoa, 2004; Saéz, Gil e Naviera, 2003). Among the Marubo of the Vale do Javari (a group studied by Inara Nascimento in this volume), Pedro Cesarino draws our attention to the idea of the "multiple person" who is connected with his doubles. To be healthy, a person must maintain a good relationship with his doubles and the rest of the universe: if not, not only will he become sick, but the rest of the community will as well. Cesarino says that the Marubo cosmos is
characterized by multiplicity and multi-positionality (being in many places), "an infinite series of personified replications, a personified myriad." (Cesarino 2011:33) At least four different kids of beings inhabit this cosmos: Human people (the marubo, called the 'living'), hyper-humans (yove spirits), infra-humans (yochi ghosts) and extra-humans (animal people). Extra-humans like plants and animals can flow into yove spirits and yochi ghosts. A person may be a momentary entity or singularity, but he is never an individual. For Cesarino, the poetry and song of the marubo are essential, because the beautiy of the art calms the unpleasentness of the doubles of a sick person. Oniska, the title of his book, refers to the state of a person who is sad or nostalgic because he is far from his social network For this reason, he will get sick. Among the Paumari, who live in Lábrea, a child must go through the ihninka ritual when he or she is born. "The ritual consists in the presentation of the soul of the child to the spirit of food. After the birth, neither mother nor child may consume anything before its ihnika has been realized, and if they don't, both will soon sicken, because the food passes through mother's milk. If the ritual is not practiced, the soul of the child will instantly become the captive of the food spirit. In this way the Paumari child in the visible world can become sick and die." (Ochoa 2011, 22-3)
The child will be the target of many protective rituals, but he or she must also learn to control h/erself and control the natural and supernatural world. The must "incorporate" techniques of self-care that will ease their social and biological life. Luiza Garnelo, writing on the Baniwas of the Upper Rio Negro, says that "Socialization of new group members emphasizes the extercize of self-control, aesceticism, the cultivation of sobriety and the control of individual impulses (Garnelo 2003, 131.) In the south of Amazonas, the Yaminawa of the Purus have the same idea as the more famous Kaxinawa: "A wise person is one who understand his whole body, associating different knowledge with different parts. Knowledge lies in the heart, in the liver, in the hands. One learns only when ingesting and rejecting certain substances: the diets and trials to which the body is submitted allow it to assimilate powers (through the stings of wasps and ants) and make it lighter, cleaning it (with boa constrictor
18
The Baniwa of the Rio Negro say that knowledge is inscribed on the heart, and to be able to remember, one must discipline daily life with not too much sleep, early waking, farming, and sleeping early after a bath. Learning to play musical instruments, dance, and participate in rituals also helps this "inscription" on the heart. I learned this information from the Shaman of the Baniwa community of ItacoatiaraMirim, and registered it in the film "Inscribed on the heart." (Silva 2013A). The Matis, neighbors of the Marubo in the Javari Valley (one of Inara Nascimento's field assistants was from this community) are often visited by Mariwin spirits during their rituals. These spirits discipline children, a serious contrast to the patient and kind treatment given to children by human adult Matis.
willingly accept the beating -- and the smallest children always run -- he will be taken by force by adolescents amount him, so that the Mariwin can strike him. Each stick may be used only one time, and once they are all used up, the Mariwin slowly leave, slouching backward (Erikson 1987, 102-3). The Matis say that the sticks combat laziness. When children are less than two years old, the Mariwin only force them to walk, touching their feet with staves wrapped in leaves. This rite is designed to promote the well-being of children (Erikson 1987, 103). The Mariwin will also strike pregnant women, just like the way that a godmother will pretend to beat a newborn child or an uncle will beat a women about to enter into menopause as way to promote continued fertility. (Erikson 1987 107 and 109, apud Melatti 1992)
The lessons given to children, which teach them about life and the self control of the body, are certainly rituals, but more than anything else they are daily disciplines: taking a bath in the river, playing to strengthen the body and learn to enjoy healthy movement, learning to dance and swim and fish, to plant and harvest. These activities mold the body and teach it to move in certain ways. Children also help with daily chores from a very young age, learning from parents and peers, and caring for each other. This knowledge is not written on paper, but in the concrete movement and action of everyday life. This also means that they learn to deal with conflict, to be with people and be angry with them, to celebrate in a festival and mourn or persist in difficult moments. Children work in the fields with their parents, though their work
Atalaia doNorte
"Their faces covered with ceramic masks, their bodies anointed with mud and covered with the leaves of jungle ferns, the Mariwin break into the big house, slouching and carrying bundles of palm branches. They do not speak, making only a deep and fearsome growl, comprehensible only to some people present. They stroke children between two years old and adolescence; if a child will not
Foto: Inara Nascimento Tavares
feces or certain kinds of honey). Shamanic training will transform the body of the apprentice through rigid alimentary and sexual diets, the ingestion of shamanic substances, long vigils, pain and suffering. These practices make the body strong, resistent, light, bitter, and powerful." (Saez, Gil, and Naviera, 2004)
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follows their age and ability, and they are always accompanied by the parents; in this way they learn to make their lives for the future. Children learn fishing in the same way, or how to make manioc flour. The actions mark the body and movement of a child as well as teaching how to do something; for this reason scholars talk of the "incorporation" of knowledge as way to be happy. In fact, the area researchers observed this fact in all three municipalities: the day to day joie de vivre of children.
iD sease
Disease as an experience and as an event
Each culture has its way to understand and socialize children and their formation as people; each culture also has a particular way of understanding illness and forms of cure. The subjectivity or experience of the sick person is part of the illness and part of its cure. Jean Langdon, writing on the Siona of Colombia, points out that illness is an experience with a given cultural system. Illness is not a static category, but a process of sociocultural construction, a "process that involves negotiations among the many actors involved, a choice of therapy, and evaluation of its efficacy -- a cycle that will continue until the illness is understood as cured." (Langdon 1995, 10). She continues,. "When different actors in the process have different knowledge, the number of diagnoses will increase considerably, based on experience and interest. In a given group, not all members have the same knowledge, due to differences in age, sex, social role‌ and also because of social alliances and networks. When we consider a situation in which various ethnic groups live together and have access to western medicine, things get even more complicated. Each stage of the process will be characterized differently by each of the participants ion the negotiations, until finally they agree on a diagnosis and treatment, each one of them contributing and conflicting with different experience and knowledge." (Landgon 1995, 10)
We see this phenomenon quite clearly in the interviews with parents about how they go about diagnosing and finding a cure for their children's
health problems, making a preliminary diagnosis and then taking children to one specialist or another as they see fit. If a child is quiet, doesn't want to play or smile, then something is wrong. But what? How does one seek through the events that might have caused the illness to find the problem and thus the cure? Most parents will begin with treatments they know and have used in the past, things like baths, herbs, and ointments, but they will also seek advice from family, neighbors, and friends. If things do not work, the parents will soon seek a traditional doctor like a rezador or shaman. At the end of the line, patents may seek a doctor or a nurse, especially if the rezador indicates that it is the correct path for the illness. In one interpretation, the therapeutic itinerary is detective novel in search of the cause of the illness; once they have found that, they will know what treatment will work. Nonetheless, attempted treatments are one of the key clues to finding the disease's etiology. So just as the idea of the person is socially constructed and different in different cultures, so too is disease: it is a complex of experiences connected with a network of meanings (Good and Good 1994; Langdon 1995, Pellegrini 2004). Buchillet and Garnelo, studying the Baniwa, understand this phenomenon in an interesting way: "The logic of the taxonomy of illness must not only match the mythic system that explains its origin, but also show how it is reproduced. In this way, the classification of illness among the Baniwa is related to a complex of conflicts into which humans and non-humans are locked." (2006:236)
In order to understand the meaning of illness, Good and Good highlight it as a "semantic network" that serves to connect meaning and word, so that the meaning is not produced through a fixed connection between signifier and a "real thing" in the physical universe, but is in fact a network of symbols built through interpretive action. (Good and Good 1982, 147) By putting the symptom that disturb the patient into a network of meaning, the doctor, the shaman, or the community and the patient come to understand and situate the experience. It can be shared, and in this way more easily
20
cured by reference to the experience of other people: it becomes a situation that can be put into a story. Good (1994) sees semantic networks as a way to connect cultural values, while at the same time seeming to be biological and natural. He argues that it is "a cultural model that doesn't only reflect and refer to specific parts of social live, but actually generates them. In American medical culture, for instance, body size has long been associated with self control." (Good 1994, 172) To expand on this idea of the semantic network, Good and Good (1982:147) see illness as an experience to which each particular subject gives meaning, but this meaning comes from relations with other people and a network of signification already present in the cultural milieu. It is a reality built of interpretations and signification, built on the meanings established within certain cultures and subcultures. It is not a univocal concept, but a product of interconnections and perspectives, conflicts between cultures and meanings to establish the "real meaning." (Good 1994, 172) In this perspective then, western biomedicine is only one of many ways to understand illness and cure. The symbols are compressed into the medical lexicon, and the diversity which gave birth to them are compressed and forgotten. Good (1994) like Langdon (1995, 2000) see illness as a oral and bodily narrative thats comes together as a certain disease, a text read by a reader or community of readers. In every case -- even in the history of western medicine -- this is a process in which many ideas speak. Especially in a context like that of the Amazon, Western medicine can never be a "unique" health system, but must understand that it will always compete with the ways that local people and cultures see, experience, and understand the symptoms that discomfort them.
h t l a e H s ' n e r d l i Ch
Child health and its problems in the Amazon
Over the last decades, Brazil has addressed the issue of children's health with great success., as we see in Chapter 3 of this book The country has reduced child mortality dramatically from what it was in the 1990s, and many municipalities have produced systems to offer exemplary care for pregnant women and young children in health posts and hospitals. Education, exams, vaccines, and doctor's appointments have all become a part of the quotidian life of young children in many parts of Brazil. However, the picture is not so rosy when we look at different regions of the country, including the interior of the Amazon. Many rural and favela children continue to be born and grow up -- and sometimes die -- without access to any of these services. The problem is both regional -- some areas are better than others -- and class-based -- certain groups remain outside of the priorities of local governments. Inequality of access is a major problem in Brazil, and Western medicine does not get to every child when he or she needs it. On the other hand, as we have see above, there is also a problem in the missed encounter between Western and traditional medicine, even when national policy declares the need for differentiated services for indigenous and other cultural minorities. (Confalonieri 1989) As we will see over the course of this book, families who live on the banks of the rivers of Amazonas use a great diversity of resources to guarantee the health of their children, including Western biomedicine. They know that what matters in the end is getting better, and they are willing to engage in sacrifices to make this happen. Traditional people have reached out to biomedicine as a resources but we seldom see the opposite occur, even when there is good evidence that other types of medicine can work in certain cases and certain diseases. We see one problem when remote groups are exposed to western
21
people at very different ends of the social hierarchy (Langdon 2011). The result of this exchange of germs without an exchange of ideas is clear in the interior of the Amazon, with common outbreaks of malaria, hepatitis, tuberculosis, and even STDs like AIDS. Because the problems are not treated or treated poorly, they sometimes metastasize into new and uncontrollable problems, like Hepatitis Delta, which began in Lรกbrea as a mutation of Hepatitis B, and now threatens many other areas (there is a also an outbreak of Hep Delta in South Asia, but is is probably an independent, parallel mutation). The lack of resources and staff applied to the problem is clearly an issue, and the distance between families and difficulty of access are indeed serious problems. However, even if the people were able to come together, it would make little difference were they not able to communicate, to cross their semantic networks to categorize disease in a way that everyone can understand and treat.
Santa Isabel doRio Negro
22
Foto: Rita de Cรกcia Oenning da Silva
illnesses like the flu, malaria, and hepatitis, as well as -- to a lesser or greater degree -- the system of interpretations that can help them to understand those illnesses or not. This situation will become a crisis when -- as is often the case -- these groups do not have access to Western medicine as well. Another problem happens with these medical systems are deaf to each other, or more commonly, when university trained doctors refuse to listen to local ideas about health and illness. Before affirming any simple division between "White Disease" and "Indian Disease" (Pellegrini 2004, 237), we should understand that these are overlapping and inter-colonizing systems; traditional people use medicine and interpretation from both camps in searching for a cure. The following case study offers us tools for understanding the complexity of an encounter between a family from the river and health professionals trained only in Western biomedicine. We should always remember that we are not talking only of a conflict between two systems of knowledge, but also of power inequality between
y d u t S e Cas
Benin Matis: When things go tragically wrong
I will go into detail on the case of a Matis child from the Vale do Javari, because I believe that it illustrates well the conflicts and lack of understanding characteristic of the current impasses between health systems. When we began this research project, the media in Amazonas publicized a polemical accusation by health professionals at the Amazonas Children's Hospital against 22 year old Tekpam Kana Matis. His son had been interned in the children's hospital with pneumonia, and the father was accused of making his health worse, even trying to kill the boy. The baby had been in the ICU for more than 5 months when, under mysterious circumstances, he appeared with strange wounds on his body, according to a report in the newspaper A CrĂtica. (Farias 2013A) The reporters pointed to an attempted infanticide. The case soon won national attention, especially in social networks, where Matis and other indigenous groups appealed to the public to understand how they were victims of the medical system. With this pressure on the hospital, the discourse turned to the possibility of negligence on the part of the nurses and included stories of violence and self defense between the different actors in the drama. Two weeks late, A CrĂtica revisited the story, now telling the story from the perspective of the Matis family. The father and mother (Tumi Machopa Matis) explained that their son (Benin) had first caught a flu, which had become pneumonia. They insisted that their action shad nothing to do with infanticide, but that they had been attacked when nurses found small wounds all over the boy's body. "The story of Benin began five months ago, when he was born as his parents traveled toward Atalaia do Norte in a canoe; they were on the way to town to vaccinate their five your old child. In the indigenous health center, the newborn first caught the flu, which then turned to pneumonia. They spoke no Portuguese and there was no translator on hand, so they did not
understand what was happening as the whole family was sent to Manaus by the DSEI of the Vale do Javari. "'During the two weeks we were in the health center, my son got sick,' explained the mother. 'The flu. Then they sent us to Manaus and we stayed at the west end first aid center. Then to the Children's Hospital. The doctor told us the boy was tired. The nurses told us not to touch the boy, that only they could do it. Then he was in the ICU for two months. His heart stopped. The doctor told us that we couldn't be with him anymore and we didn''t see him.'" (Farias 2013B)
The case is emblematic of the complex situation faced by the people who live along the river. The most important Matis medical treatment is the "Frog Vaccine," in which tree frog poison is placed on or injected into the body of the The frog vaccine is produced from the sick person to scretions of the Phyllomedusa bicolor frog, and results stimulate the in small wounds on the arms and legs of the immune system treated person, so that the poison penetrates into into action. The the blood. Though the treatment is prohibited in idea is similar to Brazil, it has been exported to alternative medicine many homoepathic centers in Europe and the USA. "It is associated cures. Many with the ayahuasca cure and with alternative medicine," said Beatriz Labate, visiting professor at people who know the Program on Druf Policy at the CIDE in the Matis, Aguascalientes, MĂŠxico. (Minuano, 2013) including the area researcher for this project, conjectured that the family had probably tried this treatment on the child, something that was understood as an attempt at infanticide by Western doctors and nurses. Western medicine want to protect and rest the body so that it can recover -- as the doctor told Tumi Matis, the boy was "tired" and needed rest -- but the Matis provoke the sick person to make him or her react and be stronger. This way of caring for themselves is essential to the group and how it sees itself: as strong and resistant. For a Matis family, to spend five months in a hospital must have been unthinkable. They were far from family and anyone who could speak their language, and far from the Matis doctors who would have treated them and their child. They were permitted none of the rituals that would have closed
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"Pano, Aruá, and Arawak groups created the frog vaccine as a part of their impressive natural pharmacy. They also use psychoactive substances in religious rituals, coca (Erythroxylum coca) , Marapuama (Ptychopetalum olacoides) and Guaraná (Paullinia cupana) prepared with Brazil nuts, "Precious bark" (Aniba canelilla); as an antiinflamatory, and natural antibiotics like Paratudo (Pffafia glomerata), Andiroba (Carapa guianensis), , and Cat's toenails (Uncaria tomentosa). They also use Carapanaúba (Aspidosperma nitidum) and Pau d'arco (Tabebuia avellanedae)" (Wikipedia). Moacir Haverroth's excellent compilation of texts on indigenous health care practices is also an important reference here. the body of the child, and in a new place they could not control their food or their seclusion. Cesarino, speaking of the Marubo, close relations of the Matis, points out that "another problem with Western medicine is the distance from the community. They know that their family will be forced into the disastrous system of public health and that they will suffer from nostalgia (oniska). The doubles of the Matis cannot accompany them out of the jungle, so their soul will become distant from their bodies, so the body will be alone and weak when they are at the hospital." (Cesarino 2011, 260) The Matis mother was making a tremendous sacrifice to her own health and sanity by staying in the hospital with the child, something that the medical team probably poorly understood. Things became even worse when the doctors and nurses, unaware of traditional Matis medicine, then accused the mother of the grave sin of infanticide, an accusation that would fall not only on Tumi Matis, but also on her whole tribe. Several years ago, UNESCO worked with a group of Matis to develop educational posters about indigenous health; there are certain problems with the project, but this comment is fascinating: "A long time ago, really a long time ago, we got sick with our own diseases. When someone had a
headache, we had a medicine in the jungle and we put it on their heads. Lots of bleeding, we used medicine from the jungle and it got better. The old people knew how to use herbs to treat illness. Pain in the liver, and they used frog vaccine. Headache, and the shaman sucked it out. They were our diseases, and the shamans helped the patients get better with our treatment. That's how the old people say it was once. But today, our diseases and white disease go all mixed up. The shaman says he wants to cure it, but he can't. Some people who want to get better do, but others who get Nawa illnesses don't. That is what I have seen… Today, that;s how it is. We get the Nawa illness and we don't get better, that's what I see. We try to get better, but it doesn't cure it, thats how it is. (Matis 2012, 27-8)
I see the tragic case of Benin Matis as a motivation to promote a real dialogue between different ideas of health and cure, a dialogue based on the idea that more than one valid medical system treats people in the region. In this way, we may be able to find new semantic networks to deal with the "mixed up diseases" that the Matis lament. As Pellegrini writes, referring to Langdon, "Disease as an event must be perceived in its individual character, not a universal as Western biomedicine sees it. Illness is bullt from the multiple meanings given the the signs associated with it in a world of plural medical systems and unequal political forces. (Langdon 1994a, 15-19)" (Pellegrini 2004, 237) It would be useful to try to open a negotiation with the medical corps in Amazonas, given that native and ribeirinho families have made the first step of seeking out the public health system, even knowing the problems that persist in it. Children are taken to the city, far from their parents and family members, destabilizing the life of the whole community -and here we should remember that this instability is one of the major causes of illness in many groups in the region, like the Baniwa. When they finally get to the city, they find themselve accused as criminals because of their medical practices. This conflict between medical worlds makes the chance of cure -- already improbably because of the weak public health system -even more distant. Marcos Pellegrini is a doctor who has spent his entire career trying to work out ways to build a medical dialogue between these systems, and he believes that doctors and nurses can be made aware of the strength of local
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medicine and the consequences of their own action. The dialogue with anthropologists has helped in this process. However, the real interlocutor here is not the anthropologist, but helping the doctor to be able to listen to and respect the voices and bodies of the people in local communities; the anthropologist should only open the door and make the first steps of communication possible. "Anthropology can ease a change in perception, so that professionals can understand that their system is not the only one that will work in every given case. They need to understand that the efficacy of medicine is culturally marked off, which should help them to understand their role better. In this process, they come to understand that a disease is an event that happens in the life of a child, not just something that goes on in his body." (Pellegrini 2004:237) The National Health Foundation (FUNASA), at the request and demand of many indigenous and minority groups, has from time to time attempted to build this kind of dialogic space. The idea of "differentiated healthcare," present in the 1988 Constitution, is the basis for these conversations, and the implementation of the DSEIs in 1999 also followed this logic (Langdon and Garnelo 2004). Maj-Lis Foller attempts to bring the practice under the rubric of intermedicality, a process of conversations and negotiations between these different groups, looking to create a healthcare alternative for populations that continue to use traditional medicine while wanting access to Western medicine as well. Diversity and dialogue among medical systems should allow a new knowledge to emerge. However, if this dialogue is to have an impact on the ground, doctors and other medical professionals who work in the area must, from the beginning of their training, learn to be sensible to different medicines. Today, they often learn that nonwestern medicine is something primitive and ineffective, best overcome and forgotten. Such a belief is both false and unproductive when working with communities that use traditional medicine, so health professionals must learn to be open to the possibility that others have something to teach them. It is extremely difficult for medical professionals, with their closed
education teaching the absolute truth of their methods, to then desconstruct this knowledge and listen to the other. Learning to value the values of the other is no simple thing, and it requires leaving one's own subjectivity and certainly to the side. Nonetheless, we propose exactly this kind of dialogue, both through this book and in future projects, At the end of this text, we propose a number of ideas that may help to establish a space for intermedicality and conversation. One of Amazonas's great riches is its diversity, which shows us how people are able to create and re-invent their own existence. This cultural wealth is clearest along the remote rivers of the region, but the culturalmedical conflicts are clearest here, as well. Along the rivers, caring for children involves relations with bacteria, but also with animals and plants, with the community, and with the supernatural world‌ but local people find the interaction with national institutions like schools and doctors even harder. Doctors who have trained in Boston or São Paulo may see the childcare system in the rural Amazon as precarious, but we should remember that it is always easiest to see what the other lacks; a Matis family in the hospital in Manaus will just as quickly see the lack of community, care, and work to make a sick person react and become stronger. It is often hard to recognize the cure that the other is able to enact, the symbolic efficacy of other health systems. For many years, the national health and educational system has criminalized and marginalized traditional ways that indigenous and ribeirinho people care for their children: we see this in the case of Benin Matis, but also in the prohibition on child labor, essential to rural education in the Amazon. As a result, we have only shot ourselves in the foot, eliminating exactly the educational and health resources that can lead to effective childcare. By understanding and valuing local knowledge, we stimulate new dialogues and new ways to care for children in the constantly changing and flowing world in which people along the rivers live. In this way, medicine can, as it promises, not only treat but also prevent illness. We can see in Atalaia, Låbrea, and Santa Isabel that indigenous and
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ribeirinho groups use and maintain creative and effective techniques to care for children in a difficult context, even as their contact with national society has brought them new diseases and challenges. To overcome these new challenges, we must be open to a real dialogue that will challenge our assumptions and values, something that is never easy, but which is clearly necessary. Simple willingness to speak and listen is an essential first step: as Bakhtin teaches, each enunciation can open up an unexpected chain to follow. Such a dialogue also demands further research and understanding, so that we can see how local people use and mix medical knowledge, how dialogue already happens. With these lessons, a more intense dialogue will be possible. To close, I return to the idea of the construction of the person, put on the Amazonian stage by Seeger, Viveiros de Castro, and da Matta, where they point to the centrality of the body as a way to think humanity in the Amazon. In 1979, the article served as a polemic against anthropologists who through they were studying "primitives in straw huts." Amazonian people were most often defined by what they lacked: no clans, no complex lineage, no political structures‌ analytical categories developed in Africa, Asia, and Melanesia made these groups seem lacking in everything. This idea of anthropology defined the fluidity, corporeality, and lack of organizing principles of lowland South America as a problem. Seeger, Viveiros de Castro, and da Matta's manifesto refused this perspective, and saw these "lacks" as virtues and strengths. In this way, they opened new ways to understand the Amazon and new ways for Amazonian people to see themselves in the midst of national society. (da Silva 2013B) Inspired in this manifesto, we want to see the practices that indigenous and ribeirinho families have developed to care for their children not as signs of problems or lacks, but as a real strength. They have learned to construct children as persons in a world where this is increasingly difficult. This strength should be the beginning of a dialogue around children's health. We do not take lack as our analytical axis, not even for people who live in some of the most difficult and remote areas of the Amazon, areas forgotten and abused by the state and national culture. In spite of their struggles against western disease, cultural colonialism, loggers, ranchers, and even death squads, they survive and even thrive. Their children laugh and play. We must learn to learn from them, listening to their voices and their bodies.
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2 r e t p a hC
Health in Rural Areas of the Amazon:
Anthropological Contributions
W
Deise Lucy Montardo
hen we think about health care, we often think first of health problems, disease. Health care follows this logic in Brazil today, because in spite of the health reforms of the 1990s to focus on prevention, we still think mostly of the treatment of disease. In this text, I will draw a panorama of the contributions that anthropology has made to thinking about health and health care in the North of Brazil. In most cases, these studies have involved indigenous groups, but I also make an effort to include the smaller number of studies about ribeirinho and caboclo communities. I want to emphasize from the beginning, however, that the differences between these populations are not as great as they might seem from a distance. Perhaps the most important health issue in the region, addressed by almost every researcher, is the comprehensive traditional health care system. In order to think about health in the region, we have to think about traditional medicine. To cite only one example, Athias (2003) points to the central role that illness plays in HupdĂŤMaku myths, through which initiated men have the capacity to "blow" or bless a cure. Illness that has come with contact with europeans, however, finds no cure in myths or in traditional practice. Athias points out that in this context, "when local people mix the medical practices of traditional groups and Western groups, the medical system must be careful to develop its thinking along with them." (2003:9) The Brazilian constitution of 1988 guaranteed "differentiated care" for indigenous people, bringing a large number of anthropologists into the field of indigenous health. Langdon insists, then, that we remember that "health anthropology developed along with health reform in Brazil. Taking advantage of theory developed in Europe and the
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"During the years of the implementation of the DSEIs as the basic structure for health care, indigenous medical policy took up very little space on the national scene. Financial resources were insufficient; public health as precarious; the state did not invest in a data collection system to understand the epidemiplogy of indigenous people; few local or regional commissions were developed to implement the policy of social control…" (2004:39)
Langdon contrasts the general chaos around indigenous health with the National Program against AIDS and STDs, which began work in 1995, with greater autonomy and with much of its resources coming from international donors. Many NGOs and universities participated in the Program, and in 1999, it extended its innovative work to treating indigenous alcoholism. In spite of this interesting experiment, however, most indigenous health care continued to be chaotic. In large part, Langdon diagnoses a political problem: when something worked on a small scale, it was almost always ended with the change in municipal administrations every four years. (2004:40) Langdon shows that as indigenous people and the formal medical system come into contact, "Indians reinterpret and appropriate parts of Western medicine… the limits between traditional and bio-medicine are permeable, making the therapeutic itinerary even more complex and meaning that people evaluate care on many different grounds, not merely on what works." (2004:45) Unfortunately, few medical professionals are trained or able to see the complexities and nuances of this fascinating mixture of medical systems. Langdon then lauds the concept of "intermedicality" as
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Foto: Rita de Cácia Oenning da Silva
United States, Brazilian anthropologists came to see these medical systems (generally categorized as indigenous medicine or popular medicine) not as the vestiges of a folkloric past, but as dynamic cultural systems." Looking at medicine in this way also helps us to understand that modern bio-medicine also develops as "the result of historical, cultural, and political processes." (2004:34-5) The SUS (Sistema Único de Saúde or Unique Health System) emerges from the health reform of the 1990s, "oriented by two principals that transcend particular groups or classes: universal and egalitarian access to health care and 'social control,' community participation in health decisions." (Langdon 2004:36-7) When Brazil recognized itself as a Pluricultural Nation -- through the 1988 Constitution -- and signed onto the UNESCO Tolerance Principles in 1995, it committed itself to a directed subsystem for indigenous health care. Here, Langdon reminds us that "indigenous health policy insists that health care is a complement, and not a substitution, for traditional medical practices. In Brazilian law, we see the explicit concern to mediate official health policy with indigenous 'self-care' as defined by Menéndez (2003)." (Langdon, 2004:37) In 1992, the Second Indigenous Health Conference proposed to create the Special Indigenous Health Districts (DSEI), a policy finally implemented in 1999. Langdon describes this implantation in words that might still be applicable almost 20 years later:
a solution, describing it as, "appropriations of discourses and knowledge between local and global hegemonies, intercultural negotiations and the production of hybrid medicine. Anthropology is built in this intermedical space, implying constant negotiation and construction." (2004:48)
Dominique Buchillet's work interests us her because of her criticism of quantitative analysis of indigenous health. Biomedicine and indigenous medicine, she argues, categorize and know health and disease through different taxonomies. A complex of symptoms might inspire a certain diagnosis for a Western doctor, while traditional medicine could separate and treat each problem in a different way. Here it is useful to think about the information about diarrhea gathered in the different areas we researched for this book. "Tariano and Desana Indians in IuauratĂŠ categorize diarrhea into different etiologies and different phases of life. For example, they point to the common diarrhea suffered by a child when h/er mother becomes pregnant. Mothers understand this diarrhea as a manifestation of jealousy of the new life in the mother's womb, and do not see it as pathological. In other cases, they see diarrhea as the symptom of another illness, like malaria, and treat it as a part of the treatment for that problem. Western medicine, in contrast, tends to treat diarrhea as itself." (2004:61) In contrast, "a doctor may consider a symptom to come from various different problems, while the patient as a singular manifestation of an underlying illness. For a doctor, 'cough' is a simple symptom, while many patients will see it as tuberculosis." (2004:63) Buchillet also points out that the symptoms and clues of indigenous illness may change over the course of the disease. Diagnosis will be more fluid, based on clinical factors, but also on "many extra-medical issues: repeated dreams, conflicts in the community where the sick person lives, the proximity of a pregnant or menstruating woman, a shaman's memory, a lightning strike near the patient's home, etc." (2004:61-6) In our research, we also saw something Buchillet considers important: different taxonomies of doctors. There are many different kinds
of traditional health "professionals" (and amateurs), and people both self diagnose and refer themselves to the specialists they find most adequate. "We must understand the semantic dimensions contained in the medical terminology of natives and westerners, to understand what they mean for local populations, which sentiments and interpretations are associated with the use of specific terms." Buchillet goes on to offer examples, where the words used for a diagnosis carry a heavy weight because of the interpretation understood by the natives, she concludes that "in diagnostic terms, we must understand indigenous gnosology, to know how indians name, categorize symptoms, and group pathological entities. We cannot merely limit ourselves to western definitions of the pathology. Without this kind of mutual clarification, control and prevention efforts organized and planned ahead of time will not be adequate to the illnesses recognized and understood by local populations." (2004:63-4)
Until now we have addressed the concerns of indigenous populations, but our research also incorporates many ribeirinho people, as well as unrecognized indigenous groups and those living outside of demarcated indian reservations. Many also live in small cities. Perhaps the most intersting ethnogrtaphy of these populations has been done by Wawzyniak (2008), who tried to understand the internal logic by which ribeirinho people understand illness and look for treatment through public health systems. He shows that they bring these diverse systems together in a special logic, responding to public policy through the lens of their own cosmology. we must understand indigenous gnosology, to know how indians name, categorize symptoms, and group pathological entities. We cannot merely limit ourselves to western definitions of the pathology. Without this kind of mutual clarification, control and prevention efforts organized and planned ahead of time will not be adequate to the illnesses recognized and understood by local populations." (2004:63-4)
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things] can be found only in a cosmological system that postulates the permutability of beings among themselves -changing from men to animals to demiurges to objects -- through a permanent changing of appearance." Only in this way does he believe himself capable of understanding the power of the "evil animal eye", and the treatment for animal haunting and the cosmology of the forests when many enchanted beings make their home. (2008: 28) Wawzyniak continues that "illness caused by 'animal haunting' is intimately related to the capacity of permutation [engeração] of the body. A demiurgic being has the power in his gaze to disorganize the world or a person to the degree that he will be altered, sickened, or attacked by an 'animal." (2008:29) Viveiros de Castro's idea of perspectivism is essential to developing this interpretation of ribeirinho tbought, but Wawzyniak also uses the idea of "physical-moral perturbation" used by Duarte (1986) "to designate illnesses that simultaneously affect inter- and intra-personal plane, resulting in a differential construction of the person. This phrase was first
Santa Isabel doRio Negro
30
Foto: Rosilene Fonseca Pereira
Wawzyniak explains that he became fascinated by the issue after hearing and seeing cases of the power of enchantment by various different beings who were able to transform their appearance and change the behavior of people and social systems. "I often heard stories of these beings, using the terms 'engerar' [come to being, transform] and the animal evil eye. These illnesses seemed a consequence of people's disrespect for certain restrictions on the use of natural resources in the people's environment." (Wawzyniak 2008: 14) I will go into detail to describe Wawzyniak's rich research, because I believe that it provides some of the most important clues for understanding the research that will follow in this book. He begins by showing that many or most illnesses in the lower TapajĂłs River "come through the gaze of beings able to transform themselves into something other, and this capacity is defined by the word 'engerar.'" This word, for Wawzyniak, serves as the key to understanding the ribeirinho ideas of health, person, body, and environment, as well as the social practices involved in maintaining these spaces and beings. "The meaning of [these
difficult to see the animals to be hunted. In contrast, once summer has arrived and the rains have used for the 'nervous disorders' of the urban working class, but it now can ended, the 'water is less' and the fish withdraw into lakes and smaller rivers. It is then easy to be used in a much wider way to talk about the relational and social throw a net 'to catch lunch' and then go home. The summer also allows better access to turtles and consequences of illness. Duarte, however, limits himself to the dualistic idea their eggs, which people eat when they can." (2008:57) of the human being -- physical and moral -- but the concept is also useful to understand trance and possession states where people understand other Wawzyniak speaks of child care from well before birth, when dimensions of being." (2008:31) "mothers or widwives massage the fetus through the womb ('pregnancy He goes on to use the ideas of Heraldo Maués (1997) to suggest that rubs') to see how the child is doing. Local people believe that the child the evil animal eye is a kind of evilness, a force that takes possession of 'grows from the head up and from the feet down,' and that with massages, people, animals, objects, or even emotional states, all in the midwife can tell order to disturb the harmony of amazonian life. This whether the child is Until the child is 2 months old, s/he will be disruption is central to the Amazonian notion of formed as he should be considered an "animal" or a "thing": a living being disease. to be born. Certain that is not yet human. The baby is a being in food is already transformation (engeração) who will be formed "It is not always easy to identify the causes of the physical discomfort prohibited and associated with the animal evil eye: intense headaches, pain in the stomach, through constant changes. After birth, one must promoted for pregnant becoming pallid, losing weight, toothache, slow loss of understanding and pass the baby through a process of humanization, direction, nausea, green stools, and vomit. Headache is the principal women to help in the which is done through corporeal practices. "The complaint." (2008:32) 'formation' of the new body must be submitted to regular and periodic person, and her physical fabrication events" -- fabrication here understood When he asked people how they would know if the effort and the care she as "a complex of interventions on substances that cause was really the animal evil and and not something takes with her body are connect the body and the world" (Viveiros do else, they explained that the only way to be sure was to all observed. 'All of Castro 1987:31) that make the body adequate for see which medicine worked. (2008:38) this has an influence on social purposes. "Abstaining from certain foods The change of seasons -- another regular the baby in the mother's and the time of seclusion permit the strengthening permutation -- also influences the flow of disease and womb." (2008:112) of the body and escape the contact with health on the Tapajós River: people believe that the The author continues substances that can cause illness… This transitions from one season to another by saying that until the precautions must be followed from birth to death. child is 2 months old, "are the sickest, especially the coming of winter, the 'dirtiest and sickest While the baby is still carried, one must take s/he will be considered time.' People complain most of eye infection and diarrhea at this time, special care because of its fragility, watching out especially among children… As the water enters into flood stage, the fish an "animal" or a for quebranto, the evil eye, nerves out of place, disperse into many places, and men must travel long distances to fish, often "thing": a living being going to the middle of the river, which may be 15 km wide in this season. and 'fallen breath' (a type of fright)." (2008:112) Though trees often give fruit at this time, thus attracting animals to be that is not yet human. hunted, movement is difficult in the flood, and the rain and clouds make it The baby is a being in
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transformation (engeração) who will be formed through constant changes. After birth, one must pass the baby through a process of humanization, which is done through corporeal practices. "The body must be submitted to regular and periodic fabrication events" -- fabrication here understood as "a complex of interventions on substances that connect the body and the world" (Viveiros do Castro 1987:31) that make the body adequate for social purposes. "Abstaining from certain foods and the time of seclusion permit the strengthening of the body and escape the contact with substances that can cause illness‌ This precautions must be followed from birth to death. While the baby is still carried, one must take special care because of its fragility, watching out for quebranto, the evil eye, nerves out of place, and 'fallen breath' (a type of fright)." (2008:112)
Wawzyniak's work allows us to understand several important points for our research. The first has to do with the precautions that a mother-tobe must take with her body before, during, and after pregnancy. This care will make the child healthy. In many cases, a diagnosis of the newborn's health will not come from observing the child h/erself, but by observing the development of the father and the mother. This may help us to understand the lack of some reporting on childhood illness. In many cases, for instance, the child need not eat prohibited foods for them to harm him or her. If the mother easts them, they will pass through her milk to the child, because they share the same substance. (2012:113) When it comes to the care of parents for their children, the difference between perceptions of health professionals and that of mothers was clear both to our researchers and to Wawzyniak:
playing by him- or her-self in the water or on the beach. Hours of going to and from steams are also closely watched so as not to 'irritate' the 'owners' of these places." (2008:114) "The body of the child is regularly caressed, whether while on the mother's lap, in the bath, removing nits and lice, and while being rocked in the hammock. I often saw grandmothers sitting with the children on their laps, giving them a massage as they talked in the shade of a tree. Massages continue through the like of an individual, and are an important technique of body modeling." (2208:114)
Another factor that we find in our own research and in Wawzyniak's analysis is the double medical system: one group of illnesses to which one has recourse to doctors, and another set to which one has recourse to rezadors and shamans. He mentions that of the many illnesses that may touch a child who lives on the banks of the river, most are considered to "take the person over. They change the sick person to the degree that s/he no longer perceieves the world in the same way and they take h/er away from the 'animation' of life: work, sex, hunting, fishing, studying, flirting, fun. Talking of illness is really a way to talk about life and the body, because as they narrate stories of illness, they also tell about day to day life, the present and the past. In this way I learned when an illness was the result of a (supernatural) 'animal attack'. The stories separate illnesses for 'curers' and thos for doctors, without making an opposing relation between the two. It is more to think about how to prevent the problems." (2008:127) Wawzyniak lists a great number of local illnesses, but not all of them apply to children. Some that do: 1. Sometimes children "freeze" into immobility after a fall, a slip, or a strike. It is easy to diagnose these problems. (2008:127) 2. "Quebranto," a kind of human evil eye, is very common in children. Wawazyniak cites Dona Gracinha, a local woman: "Mothers are very careful about that, and we hear them talk about it a lot. It happens like this: a person comes in late for lunch, and they are very hungry. It's three or four in the afternoon. The mother won't let that person see a little one, because it will cause
Health professionals often say that ribeirinho families pay too little attention to their children, but these children are with their parents constantly, in everything they do, especially while the child is nursing. The mother will only leave the child while he or she is sleeping in the hammock, and this only if an older relative is watching. After the child can walk, s/he will be left more at liberty, but only with an older brother, and never leaving the close proximity of the mother or grandmother. When they go to the "port" to bathe, wash dishes or clothes, the small children will always be close by and closely watched. Grandparents are also always present, and sometimes will even adopt the small children as "their own"; regardless, they keep the children in contact with tradition from their first days of life. During my time in the field, I never saw a child of less that eight years of age
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will be frightened. The first sign in pain in the navel or umbilical cord. As with quebrante, the child will feel pains and diarrhea. The rezador must also diagnose the problem through a test blessing. He will hold the child upside-down and 'bless it to the navel;' afterwards the child will be put on his feet, and the rezador will pretend to pull his hair three times." (2008:128)
quebranto. Mothers are very careful about that." (2009:132). Wawazyniak continues on to say that tiredness, hunger, and admiration also cause quebranto. "Dona Maria das Neves, a women from Maranhão married with a man from the Tapajós, is a blesser, and she explained that quebrante is caused by hunger associated with the 'force of admiration'. Quebrante is not always the result of a conscious act or desire; in fact it is much more comman when a tired or hungry person simply sees a child. It is as if the fainting or weakness of another person could be transferred to the child. The problem can also be caused by a person known to have a 'crazy eye' or an 'evil eye'. People with these 'eyes' 'can't look at anything, or it kills;' they can affect the quality of food, remove energy from people and beings. This kind of quebrante can even kill a child, and must be treated by three rezadores. 'You have to have three blessers to kill that strong quebrante!' Mothers seek out the rezadors when their children are weak and fainting, constantly crying, when they are yellow, when they vomit often; fevera and diarrhea can also be symptoms. As is the case with many other illnesses, the rezador will do a test prayer as a diagnosis." (2008:132-3)
Atalaia doNorte 33
Foto: Inara Nascimento Tavares
3. "Vento caído is another common illness. Lifting a child quickly above the head is considered the main cause; the child
As he continues, Wawzyniak explains that local medical specialists consider their skill to be a "gift" they have been give to cure, which "obliges them to work with people's health. For people along the river, this 'gift' explains healer's skills and attention much better than any ideas around education or training. Healers, blessers, 'pullers' and midwives have a gift 'from their birth… it's a part of their bodies. It's there to do that. You can't lear it from anyone.'" (2008:139) Training plays almost no role, but the gift demands constant "practice, experimentation, and observation; specialists can learn techniques to suck out illness, smoke it out, to use medical herbs, to massage the fetus, and to pull the child during birth." (2008: 141-2)
Wawzyniak also dedicates a complete chapter of his doctoral dissertation to the role of community health agents, explaining how this role became central to public health in the Amazon and how agents mediate between traditional and Western medicine. Here, he has a more extensive bibliography with which to work. "If they want to fulfill all of the requirements placed on them by the
medical systems. There are many concepts of health and illness in the Amazon, and without a better understanding of this diversity, "one-sizefits-all" public policies will continue to be the (ineffective) norm. We have seen, for instance, that government policies to promote day-care work in large and industrialized cities; in the rural Amazon, the shared child care system between parents, grandparents, and the extended family works quite well, allowing resources to be directed to other ends. The next chapter of this book shows another important need in future research: improving state data collections systems and making them work in the Amazonian region . These systems do not take local definitions or categories of health into account. In this next chapter, Georgia Silva shows how parameters and categories established in other regions of the country fail to address the issues and problems of health in the Amazon. If we wish to develop effective public policy for children in rural areas, we must understand the way that their families understand and deal
Santa Isabel doRio Negro
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Foto: Rita de CĂĄcia Oenning da Silva
municipal government and the health teams, the health agents must make a huge effort. The must deal with health as professionals while also caring for the health of their own families, planting and harvesting their own fields, going to constant meetings, taking courses‌ They often told me that they had no time to care for themselves and their own families: 'If you want to work with health, you have to have health,' many said. They face the challenge of being people who live in the community, people who use the health care system, and acting as a part of that system. This implies vulnerability, suffering, and daily labor risks." (2008:116) We found the same situation in the three municipalities we researched in this project. The work of the health agent is immense and demanding, but it is unsupported by the local government, given little training, and poorly integrated into plans for attending health care needs. I close this chapter emphasizing the need for a larger number of qualitative research projects on children and traditional medicine, especially as they deal with the way that people work their way through the different
with health, with what it means to be sick or well. In this way, we can not only develop effective policy, but also train health agents and health professionals so that they can provide better care for children and collect more accurate data on the transformations in the state of children's health.
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3 r e t p a hC
Data and Detours:
Research on child health in the archives of the state
I
Georgia Silva
n her May 2013 article in the Lancet, (Chan 2013) Margaret Chan, the Director the the WHO, points out that infant morality has dropped worldwide over the last 20 years, from 12 million in 1990 to 6.9 million in 2011. Infant Mortality Rates are one of the most effective indicators to reflect on child health; many studies have shown a clear connection between economic development and a low child mortality rate. Paes el al (PAES-SOUZA 2013), writing in the same edition of the Lancet, review the effects of the Bolsa Família and the Family Health Strategy (Estratégia Saúde da Família) in reducing both social inequality and in reducing child mortality, especially morbidity associated with poverty -- diarrhea, respiratory infections, and measles -- in children under five years old in Brazil. In the midst of these positive signs, what can we say about health among small children in the rural Amazon? Do these children -- whether indigenous, ribeirinho, or from quilombos -- live in conditions that promote their healthy growth and development? What does a local viewpoint say about the requirements of a realized life for children? In the rural Amazon, will these children have an equal chance to realize their human potential, to experience and contribute to social justice, as Chan asks in her article? This archival research intents to expose a panoramic view of the conditions of life in the rural Amazon, looking at the -- often weak and inaccurate -- public data on health and hygiene collected by the Brazilian government. These data inform the public policies of the Brazilian government, and as such must be examined and criticized carefully in any attempt to understand the present and future of health care for children in the Amazon.
37
Children's Health in Public Policy
In the last four decades, Brazil has advanced in the development of programs and strategies to provide health care for children. In the 1980s, the Government began the Programa Assistência Integral à Saúde da Criança (PAISC), (Program for complete health care for children), which used a epidemiological model to address the worst and most stirking causes of child mortality. It was based on five principles: 1.Promoting breastfeeding and improving food quality in the first year of life 2. Diarrhea control 3. Control of childhood respiratory illnesses 4. Immunization 5. Documentation of size and weight as a way to direct health care resources. (Mello e Figueiredo, 2007).
In the 1990s, after the general health reforms and the implementation of the SUS (Unique Health System), the federal government created the Family Health Program in 1994. The programs's strategy was based on action areas, with home visits and emphasis on prevention, recuperation, rehabilitation, and health maintenance.
In 1996, we see the creation of Integrated Attention to Childhood Illnesses, directed to improving human resources for family doctors and nurses. The new strategy also reorganized health services and education in the family and the community, so that all people could hypothetically help to identify and address health problems, especially among young children. (BRASIL, 2002). Again, the program proposed to reduce child mortality throughthe reduction of infection or seriousness of infectious diseases: diarrhea, pneumonia, intestinal parasites, meningitis, tuberculosis, malaria, measles, and even nutritional deficiencies. The strategy also promised to guarantee health care for children younger than 5, and to promote preventative health care. High rates of child mortality continued, so in 2004 the Federal Government established the List of Commitments to Complete Child Health Care, and the Reduction of Child Mortality. The new strategy looked to interdisciplinary actions through a grassroots health team; attention to mother and child health; continuing education for health teams working with children, and the organization of "lines of care." (BRASIL, 2004) These actions of focus on education and primary health care. In 2006, the National Survey on Child and Women's Health, conducted in 13,000 homes, of which 629 were in the North of Brazil, and some 30% were rural, found that the majority of deaths in children younger than 5 were caused by parinatal issues, respiratory infections, diarrhea, and malnutrition. There were also a great number of deaths whose cause was not known, an issue
FarmacinhaCaseira,Rio Purus 38
Foto: Willas Dias Costa
y c i l o P c Publi
will will find many times in this chapter. However, thanks to emphasis on dropped 39%, reducing the child mortality rate from 26.6 to 16.2 over a prenatal care, breastfeeding promotion, vaccines, and family health decade. education, child mortality rates had begun to decline. (Brasil, 2008) As we observe the changes in policy and actions for child health, we In 2006, the Federal Health Ministry launched the Stork Network, see an increasing commitment by the federal government and by the states to thus intensifying actions to benefit mothers and small children; the Network overcome the terrible statistics on infant mortality. We see these priorities in proposed to implement a new model for childbirth and child health, a healththese actions and in new investments, in the transformation of the health care network that would guarantee access, good care, and would resolve model, in the Family Health Strategy, home visits‌ all of these actions persistent problems with child -- especially neonatal -- mortality. The dovetail with UNICEF ideas to reduce child mortality. Ministry's four year plan from 2012-2015 promises to However, the national Though we have no good studies on "Promote integral health care to mothers and children through research developed over the last nutrition in the areas where we the Stork Network, emphasizing eras of high social three decades and cited here -worked, a careful national study in 2009 vulnerability." (Conselhos de Saeúde 2013) The Ministry qualitative and quantitative studies documents well the nutritional deficits reports that 4983 municipalities in Brazil have joined the that have helped to establish of indigenous children in Brazil: These initiative and that the budget for the program will be 9.4 billion national and state policies -- have studies on indigenous children's reais in 2014. not included the rural areas of nutrition have revealed high rates of Within the state of Amazonas, the State Child Health Amazonia in a systematic fashion, chronic malnutrition, often much higher Care Program has recently been approved by the majority of nor with a large enough sample to than those in similar socioeconomic municipalities. The Program proposes to work together with make informed policy decisions. groups who are not indigenous. (Leite et the Stork Network to improve well-being in early childhood, After mentioning the difficulty al., 2007; Santos, 1993; Santos & and to reduce child mortality through intense health care of access to the region, low Coimbra, 2003) It is not unusual to see initiatives with pregnant women and newborns. On a state population density, and high costs, under-weight and under-height level, the Program has neither the resources to monitor national studies fail to include the measurements in 30-50% of children less implementation and results, nor does it have the money to region in their statistics. The than five years old. (Cardoso 2009, 32) implement a robust and effective program of structural change. situation in rural areas looks According to Katherine Benevides, the director of the unfocused and nebulous through Program, in 2013 the state plans to develop and release a State Policy for the data, except in a few directed studies looking at a small sample: for Early Childhood, based on the National Policy on Child Health. As of the example, a study of nutrition in a school of 130 students on the Solimþes date of this publication, this Policy is not yet public. River. According to UNICEF's state of the world's children report in 2013, The National Survey on Child and Women's Health (2006), for Brazil stands in 107th place in childhood mortality -- where #1, Sierre Leone instance, points to a grave problem in food security in the North and (185/1000), is the worst, and San Marino, at #195 (2/1000), is the best Northeast of Brazil, but the data provide very few details on rural areas in (UNICEF 2013). Between 2000 and 2010, the number of child deaths the North; in fact, the sample included only 629 families in the North, all of
39
them in urban or suburban areas. Though Brazil is becoming an increasingly urban country, thus justifying to some degree the methodology of these studies, they play into the logic of "demographic lacunae" that have played an important role in moving populations from the South and Southeast to "empty" parts of Brazil really inhabited by indigenous people. The same logic has denied basic health care and public services to many rural people in the North. In spite of the conclusions of the study -- high levels of food insecurity in the North of Brazil -- there is no evidence from rural areas to corroborate this hypothesis. The idea of "low population density, "residual population", or "demographic lacuna" -- all used to justify the exclusion of rural areas from national statistics -- makes the lacks and weaknesses of the state in rural areas -- along rivers, deep in the jungle -- invisible. Confalonieri (2005) examines the way that these stereotypes about the Amazon have contributed to the problems in the area: 1. Low demographic density: This idea has justified federal and state governments in their promotion of migration from the South and Northeast to the North, bringing them into intense conflict with the traditional inhabitants of these areas -- conflicts that fill the headlines in Brazil today. 2. High levels of rural-urban migration. Census data make clear than in Amazonas, as in other regions of the country, the median age of migrants lies between 20-29. We might also mention that the idea of intense migration further justifies the idea that the Amazon is full of "empty space" ready to be colonized. 3. High population concentration in state capitals. Though quite correct, this idea directs almost all health care and other public services to Manaus. 4. Large populations of "traditional" people (ribeirinhos, extrativistas, indĂgenas, quilombolas, seringueiros). For logistical, economic, and ecological reasons, it is very difficult to
provide public services to people who live in the jungle and along the rivers and igarapĂŠs of the Amazon; urban technologies simply do not work in these spaces. The profoundly different ontology of these groups from Western thought also makes it difficult for the state to involve itself in a dialogue on adequate ad appropriate technologies, using local knowledge. Data on demography has a concrete impact on the life of people in every region of Brazil, determining public policy and public investment. As such, a discourse -- and resultant statistics -- based on the "demographic lacuna" or "residual populations" will immobilize human and financial resources, especially because policy planners know that changes in the region will have no impact on all-important national statistics. The low level of appropriate technology development and the near complete absence of public services -- potable water, sewer, trash collection -- come as a result of these skewed data, and have a negative and powerful impact on health in the rural Amazon. As such, statistics and censi in the Amazon are not "mere numbers" but a concrete cause of children's health problems in the region.
d o h d l i h Early C
Early Childhood health in the Amazon
It is a hard task to provide a baseline of health conditions, founded on previous demographic and epidemiological research on rural areas of the state of Amazonas. The health information produced by public facilities are not reliable for a series of reasons: 1. Low coverage in data collection 2. Lack of trained professionals to collect information 3. Low coverage in health care 4. Lack of health professionals 5. Lack of infrastructure for communications
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In this context, even the most basic statistics, like live births and mortality, are untrustworthy. Ours is not the first study to criticize these statistical problems. The underreporting of vital events (live births, stillbirths, deaths) is a reality in Brazil (Romero, 2002; Schmid, 2009), and underreporting hinders the construction of core indicators on mortality and infant mortality, making it impossible to have any "real" knowledge about the health status of a population (Schmid, 2009). Cardoso et al (2005:1606) documented improvement in the Mortality Information System (SIM) and the National Live Births System (SINASC) in recent years, but they also acknowledge the underreporting of deaths at high rates, an error rate of "20.0% for the national average and about 40.0% for the North and Northeast regions, being more significant in children under one year and in the elderly." Birth Certificates have been free in Brazil since 1997, but underreporting continues high, especially in some regions of the country. Schmid (2009) points out that the Brazilian Census estimates that the North and Northeast do the worst job at registering live births, even after the National Civil Registry Campaign. She gives several reasons for these statistical problems: 1. Cultural issues, including the lack of knowledge of the consequences of not recognizing paternity and the need for registration to gain civil rights. 2. Geographical issues, especially the great distance that rural people -- among them the families in the rural Amazon here studied -- must travel to get to a Notary Public, as well as the costs implied in that travel. 3. Socio-economic status, especially lack of education, reduces families' perception of the need for official documents. 4. Institutional problems include a lack of enforcement of the free birth certificate law, the lack of networks to support
children, and the absence of Notary Publics in many municipalities. The information that emerges from this chaotic and inaccurate system is what public policy professionals use to create their strategies. The numbers are then manipulated to justify certain actions, so we cannot ignore them; however, we need to look at these official statistics with a critical eye, not seeing them as objective data reflecting a real situation. As I continue this essay, I will use my own experience as s researcher in rural Amazonas to explain the challenges and inaccuracies of official documentation.
n o i g e R aD ta by
Data by Health Region in the Amazon
2010 Census data count 3.483.985 people living in the state of Amazonas, 728.429 in rural areas. 728.429 are male -- 37.222 less that one year old and 151.286 between one and five -- while among 1.730.806 females, 36.156 are under one year old and 146.651 are between one and five. Data do not relate how many rural people are between zero and five, because the database does not select for these variables. The census also provides a breakdown by city. For the three
41
municipalities studied in this book, we see the following data: We can compare this information to data collected on social assistance programs (attached chart). When we compare the data collected by the census in 2010 with the 2013 data from the System for Indigenous Health (Siasi), we see the consequences of bad data collection, especially looking at ethnic make-up for Atalaia do Norte and Santa Isabel. In both municipalities, the majority of the population is indigenous, implying a different structure for health care. The indigenous health system demands services by district, rural "Multidisciplinary" indigenous health care teams with a nurse, dentist, nurse assistant, doctor, and and indigenous health agent. Unfortunately, the census and the Health Ministry seem to be out of dialogue on their numbers. If we look at 2012 data on Lábrea, we see a substantial difference between numbers of indigenous people. The Siasi (Health Ministry) collects information on indigenous people in villages and reservations but not in the city; the Census should collect information on both urban and rural indians. However, the Siasi numbers are much higher than the census data, when in fact they should be substantially lower. Even if we accept a three year difference in the research dates, the difference -more that 1000 people -- is inexplicable. Cardoso et all (2005) reflect on the challenges of including color and race in vital statistics like birth and death, because people cannot self-identify in any category. Nevertheless, these racial categories have been adopted slowly over the last fifteen years by the Health Ministry, allowing professionals to establish clear criteria. We also note than in the care of census data and participation in the health network, people can self-identify,
overcoming the challenge addressed by Cardoso and his team. When we compare official data with information gathered on the ground, statistic become even harder to believe. For instance, the Mortality Information System shows 10 deaths of children in 2011 in Atalaia, nine of them being indigenous children. The indigenous communities of the Vale do Javari, part of Atalaia do Norte, are notorious for their poor health reporting and poor health care. In 2010, the DSEI (Indigenous Health District) dealt with an fatal outbreak of diarrhea and malnutrition among indigenous children, and anecdotal evidence have pointed to the deaths of 23 Kanamari children that year. The Bipartisan Coadministrative Commission of the State of Amazonas implemented Resolution 59 in June, 2011 to revise the regional plan for health. There are now nine regions and 18 micro-regions to divide health reporting in the state: Upper Solimões, Around Manaus, Rio Negro and Solimões, Madeira, Juruá, Purus, Mid-Amazon Triangle, and Lower Amazonas. For this study, the three most important are Upper Solimões (Atalaia do Norte), Around Manaus (Santa Isabel do Rio Negro) e Purus (Lábrea). Though these regions were designed to facilitate reporting and policy planning, both the Seminar for Health Managers (2013) and the Qualisus Network diagnostic (2013) show that the data express more inconsistencies than information, especially considering the size and incoherence of the regions. For example, the Around Manaus region includes the capital and nearby municipalities -- where people have access to excellent hospitals and a network of health care -- but also the indigenous areas of São Gabriel and Santa Isabel, 800 km from the capital and with demographic, ecological, and epidemiological conditions that have nothing to do with those in Manaus.
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with 130,122 (58%) living in towns and 93,972 (42%) in the countryside. In None the less, we must deal with the data as documented by region, addition to Atalaia do Norte, the region also includes the municipalities of because it is tabulated that way by the state government. Let's look first at Amaturá, Benjamim Constant, Fonte Boa, Jutaí, Santo Antônio do Içá, São the Upper Paulo de Olivença, Tabatinga, Tonantins, with Atalaia categoriezed in the Solimões Categorized in the Tabatinga subregion, along with Tabatinga, Benjamim Constant, and São region, where the same region Paulo de Olivença. In addition to municipal health resources, three we can indigenous health districts (DSEI) also work in the region: DSEI Médio compare Santa Isabel Solimões, DSEI Alto Solimões, and DSEI Vale do Javari. these statistics The region to which Santa Isabel was assigned, Around Manaus, also with those Manaus includes the municipalities of Manaus, Presidente Figueiredo, Rio Preto da generated by Eva, Iranduba, Careiro da Várzea, Careiro Castanho, Manaquiri, Autazes, the Qualisus Nova Olinda do Norte, São Gabriel da Cachoeira, and Barcelos. These areas diagnostic. have extremely diverse characteristics: around Manaus the populations are The Network urban or riberinho, while in the middle and upper Rio Negro, inhabitants are for Better largely traditional and indigenous. The Purus region, of which Lábrea is a Heath Care in part, has a greater demographic consistency, made up largely of small towns the SUS -connected by the Rio Purus: Lábrea, Pauini, Canutama, Tapauá e Boca do Qualisus -- is Acre. a project to The data recognize a very weak water distribution system, with contribute to 46.6% of families with regional health networks. It The municipalities of the Upper Rio Negro were not included in the access to running water works to construct a unified Around Manaus region because of geographical proximity. This (not purified water) and health strategy between states heterodox joining was built on the decision of policy planners who only 2.6% of the and municipalities through timesaw that no hospital in the area could serve as a reference for population with sewers limited resources. Though these high level health care. There is a military hospital in São Gabriel, or septic tanks. Among data are aggregated, they do however, and it works closely with the state health system in 2885 homes in the town provide important information Manaus. However, to get to this hospital from Barcelos requires a of Atalaia, this number about sewage and potable water, long up-river trip, taking almost as long as a trip to Manaus (these drops to 0.7%. Among which allow for a comparison are some of the geographically largest municipalities in Brazil). the rural population, 0% with the other municipalities There are reasons to link these municipalities to Manaus; the have a sewage hookup. studied in this book. decision, though problematic for data collection, is a response to Without proper sewage 224,094 people live in the the weak health infrastructure in the region. (Souza 2013, 7) treatment, human waste Upper Solimões Health Region,
Health Regions
43
is deposited directly in rivers and igarapés. We see the results of the consequent water pollution in high rates of intestinal infection, hepatitis A, and intestinal parasites. Unfortunately, these statistics are common in Brazil, where of the 1636 municipalities considered "rural," 95.5% have inadequate public sanitation systems; none the less, Atalaia has particularly bad conditions. In Lábrea, for instance, 4.9% of rural homes have an adequate sewage system (IGBE 2011), more than in urban areas of Atalaia. Though many communities do not collect water in the same places they defecate or bathe, drinking water is almost inevitably contaminated. High water season is accompanied by diarrhea and malnutrition (often caused more by parasites and illness than by lack of food), as well as hepatitis, which health workers believe infects children in early childhood. The 2011 census also provides good information on water and sewer in schools, further strengthening the argument on the paucity of basic sanitation. In Lábrea, 83% of schools get their water directly from the river, while in Atalaia the number is 69% and in Santa Isabel, 75%. In 2012, Brazilian municipal elections brought new mayors and city councils into town halls around the country; the new elected officials brought new health secretaries with them. In order to teach these secretaries about the public policies for which they would be responsible, the government sponsored a seminar for municipal health managers; during these meetings, they learned about the demographic and epidemiological profile of their regions, their role as policy organizers, and how their work could improve the health conditions of their municipalities. At this meeting, the health administrators examined many statistics about the Health Regions in Amazonas. I annex here the data they were
provided about live births; regions pertinent to this book are highlighted. We see a generally stable portrait here, with the exception of Atalaia do Norte, where there is s spike in 2009 and 2011, perhaps more the result of data collection that real changes. .Within the regions, we can see a migration to municipal centers for childbirth, as well as an increased number of families who move to the center to get easier access to government benefits like Bolsa Família and notary publics. In the Upper Solimões, because of high levels of Hepatitis B, C, and Delta, health professionals actively promote hospital birth, and many mothers, fearing contamination through vertical transmission, accept migration to the city for childbirth. In collaboration with the NGO Health without Limits, in 2011, I researched health and health services among the Kanamary in the Vale do Javari indigenous reservation. The Kanamay have the third most hepatitis in the Vale and have high levels of gonorrhea and syphilis -- 21 cases of syphilis among the Kanamary in 2010, of a total of 78 cases in the whole Vale Reservation. While on-the-ground researchers report a steep increase in hospital births, official statistics show a less dramatic change. We note that Upper Solimões continues to have the lowest out of hospital birth rate in the state. Unfortunately, data do not distinguish between vaginal and cesarian-section births. As we see in the firtst chart on the next page, there is a rapid drop in the percentage of hospital births in Atalaia in 2009 and 2011, the same year that we saw a rise in the absolute number of births. The conjunction of these two data sets indicates that in those years, elevated presence of medical professionals in the rural areas of the municipality were able to provide a more accurate count of the real number of births. The years of these
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Percent of Births in hospital
first child born before 20. State planning documents express the problem in this way: Teen pregnancy is an important problem in Amazonas, especially when we note than in 2011, 27% of births were to women less than 20 years old. In some regions -- Purus, Juruá, Madeira, Triângulo e Negro/Solimões -- this number climbs over 30 %. Teen pregnancy in the 10-14 year old counts for 7% of the births to women under 20, with serious problems in Japurá (Triangulo) with 20%, Nhamundá (Baixo Amazonas) with 16%, Tapauá (Purus) and Anamã (Rio Negro and Solimões) both with 14% and Atalaia do Norte (Alto Solimões) with 13% [my emphasis]. (SUSAM, 2012:08)
The percentage of babies born to teenagers increased moderately in Percentage of Births by age range every region of the state between 2008-2012, with statistics are important, the highest numbers happening in the Purus because -- according to Region. The State Heath Ministry is concerned local leaders -- 2008 with these births because of dangers associated marks the year that DSEI with early pregnancy: late access to pre-natal care health professionals and a high level of premature births. None the stopped coming into the less, the state statistics do not divide data by age in communities regularly, as statistics on premature births, so we cannot see well as failing to have whether these general trends are also realized in sufficient medication, Amazonas. staff, and logistical supplies (gasoline, hospital gloves, etc). After 2010, the We can see that the number of premature births doubled or DSEI in the Rio Negro, serving São Gabriel, Santa Isabel, and Barcelos, tripled in almost every region over these five years, something began to serve sick people only at the territorial posts. In São Gabriel, only
five of 19 posts were used regularly by health teams, while other teams came to the posts only briefly to vaccinate and provide emergency services. While working in the Rio Tiquié during this time, I met with several communities that had not seen a doctor for more than a year, and where a nurse came only one day every six months. With this reduction in staff and home visits, the number of "rescues" -- emergency trips to the municipal center for hospitalization -- increased dramatically. The State Health Secretary expressed worry about teen birth rates. High birth rates in the area are largely due to the social and cultural practice of early marriage, with young women marrying between 15-18, with their
Teen Pregnancy Rate, 2008-2012
45
unexpected given the health system's increasing emphasis on pre and post natal care. As such, we suppose a sub-register of data in previous years, when the 12-18% numbers were probably already true. In recent years, one national program has modified almost all statistics on childhood: Bolsa Família. Because parents need to register their child and provide health data to the state to continue the benefit, this information now enters the official register with less error. Percentage of Premature Births
y t i l a t r o nI fant M
Infant Mortality in the State of Amazonas
In 2009, then-Governor Eduardo Braga and the mayors of Manaus, Boca do Acre, Borba, Coari, Itacoatiara, Manacapuru, Maués, Parintins, São Gabriel da Cachoeira, Tabatinga, Tapauá and Tefé signed the Pact for the Reduction of Infant Mortality. These 12 municipalities had shown the worst statistics on infant mortality in the state, and has thus been considered the most important cities for federal investment. The states of Brazil's Northeast and eight other states in the North also participated in this initiative, gaining human, financial, and technological resources as a way to achieve the UN Millennium Goals. The North and Northeast of Brazil were responsible for almost half
of all infant (0-1 year old) deaths in Brazil between 2000 and 2007, with the majority of these deaths attributed to avoidable causes: pre-and post natal care, lack of access to health care, and lack of healthy water for cleaning and consumption. As we have seen many times, the municipalities of Amazonas have completely inadequate sewage and water treatment systems and weak health networks. Over those years, improvements in care through the Family Health Strategy did have an impact on child health, however. The numbers here presented should be read as parameters not entirely faithful to the situation on the ground, given sub-reporting in rural areas. High indigenous populations also traditionally cause under-reporting in infant mortality. None the less, we should look at the statistics, which place Amazonas somewhat above the national infant mortality rate of 13.9. We see that Alto Solimões has one of the worst rates -- varying quite a lot year by year -- while Purus has shown a gradual elevation of mortality rates. In Atalaia do Norte, the Indigenous Reservations have demanded intense attention to reduce child mortality. In 2010 the DSEI of the Vale de Javari entered a state of emergency after Kanamary indians occupied the local indigenous health center to demand better care, especially bacause of malnutrition along the Rio Itaquai. According to Kora, president of the AKAVAJA (Associação Kanamary do Vale do Javari), just from April to December of 2010, there were 17 deaths in this small region, including 12 children. We should also note here that the region depends upon a collaboration between the Health Ministry, the International Labor Organization, and UNICEF to reduce child mortality and to prevent STDs, hepatitis, and AIDS. The group Amazonaids, a collaborative alliance between UNICEF, UNAIDS, Fundação Alfredo da Mata, the Special Secretary on Indigenous People, and the national nework of people living with HIV, presented a study, based on tests of 20,000 indians in the region, showing a 2.3% syphilis rate and a 0.13 HIV infection rate. As we return the the statistics on child mortality, we see that in 2009
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Pact has had any positive results. Along the Madeira River, infant mortality rates remained relatively stable until 2011, when they began to increase. Though reporting is always a possible cause, here we can also suggest a number of other issues in this region: the construction of the Jirau and Santo Antônio hydroelectric dams, deforestation, water quality reduction, and new migration. In the Around Manaus Region, we see a gradual decrease in child mortality, but once again data on the upper Rio Negro are hidden among the larger numbers of the capital. During my years of work in the region, I perceived a lack of longand 2010, soon after the implementation of the Pact for the Reduction of term health initiatives after 2010, and the glaring under-reporting of Infant Mortality, we see a drop in mortality rates in several regions: Baixo children's deaths. I would characterize the health projects in the Upper Rio Amazonas, Entorno de Manaus, Médio Amazonas, Purus and Rio Madeira. Negro during this time as discontinuous, irregular, ineffective, and not costStudies over the long term have shown that the areas where child effective. malnutrition is worst -- and thus where the remedies proposed by the Pact When we look at the causes will have the slowest impact -- are along the Rio Negro of death among small children (Marinho et al., 1992; Yuyama, 1996; 1999; Alencar et Infant Mortality Rates, Amazonas (less that one year old), we see a al., 2001). Unfortunately, by grouping together the disturbing statistic: numbers municipalities along the Rio Negro with Manaus, we are that vary from 0 to 68.8% in unable to observe this issue with detail. the "poorly defined" category; In 2011 and 2012, we see uneven increases in though the state average is child mortality rates in Purus, Juruá, and Upper 9.3%, in many municipalities, Solimões. Given that Tapauá and Boca do Acre, along the cause of death is undefined the Purus, and Tabatinha, along the Solimões, are in more than half of all cases. priority municipalities, the opposite should have This failure comes in great part occurred. Perhaps the change is, as we have seen many because of the lack of qualified times in this study, more the result of reporting than of medical professionals to sign a realities on the ground. Regardless, other regions, like death certificate, especially in Around Manaus, have maintained s certain statistical rural areas. According to stability, and until the State releases numbers official statistics, all child deaths municipality by municipality, it will be hard to see if the
47
are categorized in Atalaia do Norte, while 18.2% are not defined in Lábrea, on the Upper Rio Negro, I observed that the health professionals followed and 20% in Santa Isabel. government guidelines more than local needs. Among the Hupd'äh, on the I have observed that when health teams are not present in rural or Rio Tiquié, it is obvious that the most urgent problems for young children indigenous communities, or when only the Health Agent is present, deaths are skin diseases, parasitic and intestinal infections. However, the health of young children will only be recorded if the children are taken to regional team dedicated almost all of its efforts to doing pap smears as a part of the hospitals before their death. Statistics will show only children who died in Cervical Cancer Prevention Program. Though the team was present during a institutions, not those who died at home. In many rural areas of the state, diarrhea outbreak, which they had the tools and the knowledge to address, one must travel 10 days by boat or even more by foot -- as in the case of the they fulfilled only their burocratic duty to get pap smears. After two years, Yanomami of São Gabriel and the results of these tests Santa Isabel, or in Roraima -never arrived in the The case of the Kanamary explains the challenges in order to reach a municipal Hupd'äh community. of STDs and AIDS in the region. This group is highly mobile, center. Few sick children will moving along the Juruá, Itaquai, and Javari Rivers and survive such a voyage. In this In order to understand context, only a collaboration the conditions under maintaining reciprocal alliances through constant visits with the Army, which has which health for marriages and work exchanges. They may stay in any one helicopters, would be able to professionals work in region for up to six months. The circulation between rivers save the life of dying children rural areas of Amazonas, is complemented by a smaller circulation of people along or even register their deaths. I sent questionnaires to their own river. Health professionals have pointed to this Families in quilombos, all coordinators of the mobility as a major factor and challenge in providing Extractive Reserves, and along Children's Health health care around sexual and reproductive health, STDs, the rivers of the region face Program of Amazonas. vaccines, and registration. When I did fieldwork in the area, similar issues around mobility, Unfortunately, only I saw clearly how this happens. A fifteen year old girl while having fewer resources representatives from returned from the Rio Jurua to her village pregnant, and than indigenous people -- who Tefé, Itamarati, São was diagnosed with gonorrhea. However, by the time her at least have the Health Gabriel da Cachoeira, exam was done, she was already in movement to another Districts. The health teams Boa Vista do Ramos, São region. We see here how the movement of indigenous who work in these regions have Paulo de Olivença and peoples can trouble any simple plan to bring health care, little or no training in on-site Caapiranga responded. and how careful policy planning must be. data recording, so it is very None the less, these difficult to get accurate responses offer us some epidemiological data on these distant areas, a fact that has clear consequences insight into the way public health policy for children is carried out in rural in health care projects. For example, when I was working with a DSEI team areas of the state.
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100% of the respondents informed us that the greatest challenge for organizing health care is transportation of health professionals to rural areas. Half of the municipalities have Family Health Teams with access to rural areas; in Caapiringa, for instance, two health teams travel once every two months with a doctor and a nurse, as well as providing vaccines and doing health education work. Details on this work, unfortunately, were not forthcoming. All of the municipalities employed Heath Agents through the Federal Community Health Agent Program, but this does not imply home visits by trained professionals. Every municipality surveyed placed reduction of child mortality as a top priority, and listed the same issues around morbidity: respiratory infections, malnutrition, and chronic and acute gastroenteritis. These responses reflect national priorities, and only repeat the need to improve public sanitation. These causes of death are also easily treatable with quality home health care. Child Mortrality Rates, Brazil, 2008-2011
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s e i t i l a p i c i n u M Studied
Atalaia do Norte
The 2012 Census found 1,250 children under five living in rural areas of the municipality, accounting for 15.1% of the rural total. Census data did not distinguish between indigenous and non-indigenous children in rural areas, though this information might be available through the rural Health Teams. Atalaia do Norte has 15 public health centers, including two Basic Health Units, a hospital, and a number of mobile sites available to the Indigenous Health System. Three of these centers are administrative and do not provide health care. There are four Family Health Teams in the municipality, providing home visits, as of May 2013. These Teams are all general, with specialization for ribeirinhos, rural inhabitants, etc. Health Teams that work with indigenous groups are not registered in this database. The census provides a number of interesting data points about Atalaia, as we see here in the attached chart. As we can see, schools and homes have extremely inadequate systems of sewer and water. The Mortality Information System provides interesting, if not always helpful, information on morbidity for children under one year old. As always, before looking at the data is is important to remember data collection problems in rural areas, which make it extremely difficult to develop an epidemiological profile. The DataSUS compiled the data on morbidity, using the
International Disease Classification System (ICD-10); it is available on the following page. We see that the the principal cause of infant mortality is perinatal complications, marking the time between the 22nd week of pregnancy until 7 days after birth. These problems include complications to pregnancy, death
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in childbirth, birth trauma, respiratory and cardiac problems caused by birth, hemorrhages and other blood problems, endocrine syndromes, and issues around perinatal hypothermia. "Certain conditions in the perinatal period" is a kind of catch-all category for death in the first days of a baby's life, making it difficult to distinguish the essential problem.
Disease Classification, ICD-10
s e i t i l a p i n u M d Studie
Lábrea
The 2012 Census counts 13,494 people dwelling in rural areas, 1,894 of them between 0-5 years old. The city has seven health centers: Centro de Saúde Lábrea, Centro de Saúde Edval Ventura dos Santos, Centro de Saúde Francisco Fernandes da Silva Chico Breve, Centro de Saúde Raimundo Domingos de Souza, Centro de Saúde Sebastiana Maia de Souza, CEO Rosa Campos Ribeiro and the Unidade Hospitalar de Lábrea. Different from Atalaia do Norte, administrative centers are not included in official data, but only those that provide direct care. The municipality has 13 Family Health Teams, none of which are clearly distinguished by speciality, and 71 Health Agents. Morbidity of children under one year old is registered in the attached chart. As in Atalaia do Norte, Perinatal Conditions are the largest cause of death. We should note that XVI (Perinatal Conditions) and XVIII (Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified) are among the most poorly defined categories, and together account for 78% of all deaths. When we look at sanitation data from the 2010 census, we see issues similar to those in Atalaia do Norte.
Number of child deaths per year and Category, Lábrea
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s e i t i l a p i c i n u M d Studie
Santa Isabel do Rio Negro
Number of child deaths per year and Category, Santa Isabel
The 2010 Census found 11,290 people living in rural areas of Santa Isabel, of which 2,069 were under five years old. Further census data show serious deficiencies in public sanitation. National data records eight health centers in 2013, three of them in indigenous reservations: Laboratório de Próteses, Posto de Saúde Massarabi, Posto de Saúde Municipal Tapuruquara, Posto de Saúde Nazaré do Enuixi, Posto de Saúde Serrinha, Secretaria Municipal de Saúde de Santa Isabel do Rio Negro, Unidade Hospitalar de Santa Isabel do Rio Negro and Vigilância Sanitária de Santa Isabel do Rio Negro. Morbidity data, as in Lábrea, tend toward the poorly defined XVI and XVIII categories. As in the other two municipalities in this study, the most common category is the catch-all "perinatal conditions."
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Conclusions
d. Education and training in epidemiology and health records for health professionals in the medium term e. Larger portion of Family Health Strategy dedicated to rural areas; until now, most of this money has been invested in city centers.
Archives, government information systems, and the academic bibliography can provide some information about the epidemiological profile of the three municipalities on which this study centers. Though the collation of data by regions and the serious problems in registration should give us serious doubt about the usefulness of these data -especially as they are used, often uncritically, by policy makers -- we can use this information to propose some actions in rural Amazonas. a. Invest in better systems for gathering correct and honest vital statistics, which function for families that live in the interior of Amazonas.
f. Investment in infrastructure that resists the climate and weather of the region.
Santa Isabel doRio Negro
b. Develop local research on health and nutrition, so that public policy can respond to the diverse needs of children in extremely different ecological and economic areas.
Foto: Rosilene Fonseca Pereira
s n o i s u l c Con
c. Investment in design, monitoring, evaluation, and social technologies for the State Children's Health Program, prioritizing municipalities with extensive rural areas.
g. Investment in sewage and water, based on the possibilities and resources present in small towns and rural areas, as a way to reduce parasite, intestinal problems, diarrhea, etc. h. Though State concerns about teen pregnancy may not take regional culture into consideration, sexual and reproductive health of young women is an issue, and should be on the table as a part of policy strategies.
i. Frightening levels of hepatitis infection in the Vale do Javari merit serious investmentes in containing the outbreak. These actions
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must be based on local and indigenous understanding of food and sexuality, and must consider the needs of men -- less likely to seek professional care -- and women. j. Investment in Health Centers and infrastructure in rural areas, accessible without days of travel to municipal centers k. Investment in communications, radios and the internet to improve the transfer of health data, to reduce interpherence by municipal authorities, and to direct attention to disease outbreaks in rural areas.
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4 r e t p a hC
Santa Isabel do Rio Negro Rosilene Fonseca Pereira
T
his chapter takes as its goal a new understanding of the way that families in rural areas of Santa Isabel do Rio Negro care for their children and relate to the formal health care system, as the first step in a process of expanding these children's access to public health and sanitation. In order to advance this research, in April, May, and June 2013, I interviewed 92 families, with more than 150 children between 0-5 years of age in rural communities of Santa Isabel. This text begins with a contextualization of the region, its political and social organization, and then develops an analysis of the data before moving on to assess the results and offer conclusions. Santa Isabel is located in the extreme north of Brazil, and borders on the municipalities of São Gabriel da Cachoeira, Barcelos, and Maraã, as well as having an international border with Venezuela. Several of the communities researched in this study lie within the Middle Rio Negro Indigenous Reservations I and II, administered by the Association of Indigenous and Ribeirinho Communities, itself part of the Lower Rio Negro Indigenous Coordinating group, an ally of the more famous FOIRN (Federation of Indigenous Organizations of the upper Rio Negro). In the 2010 census, the IBGE counted 18,146 inhabitants in Santa Isabel, previously named Tupuruquara. Of these people, more than 90% are indigenous (ISA 2006). The research took place in the rural indigenous communities of Tabocal do Uneuixi, Matozinho, Areal, Chile, Maricota, Boa Vista, Uábada II, Cartucho, Tayaçu (São João II), Massarabi and in the neighborhoods of São José and São Judas, close to the town center. The first four communities lie outside of official indigenous reservations but are clearly indigenous, with many different ethnic groups living there. The other villages, equally multi-ethnic, lie within official reservations. Families participating in
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colaboration with the Secretary of Health for Santa Isabel, asked formally if they wished to participate. I had already known many of these leaders through our work together in the ACIR, CAIBRN, or the FOIRN. These organizations helped with the free use of an aluminum boat with a powerful 40 hp motor, essential for quick movement over the long distances between villages. In addition to me and my assistants, the project directors, Kurt Shaw and Rita da Silva, also accompanied me in research incursions into Tabocal and Boa Vista. I interviewed any family in the communities who wished to talk with me, even if their children fell outside of the age range of this study. Those who did not have children between 0-5 are not included in the stats that follow, though their ideas do play a role in the qualitative analysis. The following graphic illustrates the number of families interviewed in each community, along with the number of small children that are members of those families. The data collected in this study come from closed and open ended interviews with parents, health agents, and local leaders. We also accompanied many families in their day to
y g o l o d o h t Me
Methodology
Over the course of this research, I interviews eight health agents and 92 families -- 72 rural and 20 in the town of Santa Isabel. In most cases, I began by contacting local leaders and health professionals, then -- in
Areal Boa Vista Cartucho Chile Maricota Massarabi SIRN Tayaçu Tabocal Uábada 2
TabocaldoUneuixi
Foto: Rita de Cácia Oenning da Silva
the research identified themselves with many different indigenous groups: Arapaço, Baré, Baniwa, Dessano, Nadëb, Piratapuia, Tariano, Tukano, Tuyuka, Yanomami, Karapanã, and Kuiawï. In general these communities live on fish, manioca and its derivatives, and seasonal fruits: abiú, cucura, pineapple, ingá, bacaba, açaí etc. They organize themeslves by electing an administrator who is responsible for dealing with the government and with visitors; previously, this position had been called the "captain, as is common in other communities along the Rio Negro, but the name was changed by the 1996 city government, run by Brigadeiro Sérgio da Silveira Cardador; he did not like the military tone of the title and changed it to "administrator". Health agents and teachers also play important leadership roles. Health care is administered by the Special Indigenous Health District for the Rio Negro (DSEI-Rio Negro), which has its principal offices in the ex-Salesian hospital in the town of Santa Isabel. The first four communities studied are part of the Nazaré base of the DSEI, while the other are part of the Massarabi area.
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day activities in order to observe and understand the quotidian dynamics in rural areas. As I interviewed parents, their small children were almost always present, cared for by parents or older siblings. I almost never saw a child walking alone through the villages: they were always in groups or with their parents or families. Support from local leaders was essential for the success of the semistructured interviews. I also had the support of four field assistants, welleducated young indigenous leaders from the communities I researched. They were Elio F.Pereira, a Piratapuia indian with a Masters in Education from the
Pontífica Universidade Católica in São Paulo (and my brother) Ilma Fernandes Nery, also a Piratapuia, with a diploma in Indigenous Project Management and an MA in arts from the UFAM, Eliana Saldanha Pedrosa, an Arapaço indian who has managed many projects for the FOIRN and has an MS in non-profit administration from the Salesian University of Amazonas, Elzamar Cordeiro Venâncio - a Tukano with a degree in Dental Hygiene. Before any interviews, I always spoke with community leaders and to village meetings, explaining the purpose of the research and our hopes for its impact. I then visited the communities for interviews based on the
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scheduling availability of local leaders, the health agent, and the families. I then analyzed the data points through statistical analysis and by crossreferencing the statistics with the qualitative interviews.
Results
Results and Reflections
The DSEI installed health posts for low-level problems in each of the two poles of attention: Nazaré and Massarabi; health professionals go to these posts briefly for pre-programmed appointments with the community. In contrast, Health Agents work full time in the communities, and are almost always community members. Hypothetically, the agents receive careful training -- though they say there has not been any education for the last three years, so new agents were never trained -- in first aid and in diagnosing which sick or injured people should be taken to health posts or the hospital. Several of the health agents -- they have asked their names to be withheld -point out that the professional DSEI health teams have made their work much harder by complaining that they take too many patients to posts and the hospital. Today, thanks to these criticisms from health professionals and to the lack of training, many health agents told me that they no longer know how to diagnose what is a really an emergency and what is not. "Can we only take people to the hospital if they are dying?" one asked. In order to control the health agents' use of emergency service, the DSEI may refuse to reimburse them for gasoline used in these trips, thus making it impossible to return home to work. Health agents also report that in recent years, the DSEI has failed to provide them with the hypocloride they distribute for water treatment and with basic first aid kits. DSEI staff with whom I talked attributed this problem to lack of financial resources, but health agents do not have access to budgets, so we cannot confirm this. The following story illustrates the problem faced by health agents
when it comes to emergency care: Diroá (not the child's real name) was playing marbles one day, and suddely he swallows the marble. He was choking and couldn't breathe… His father ran for the health agent, and the agent saw he couldn't solve the problem on his own, so he got the motor and the canoe and off they went to the hospital. Now, Dioá has always been afraid of doctors, so he pretended he could breathe, he nodded and faked that he was OK when the agent asked him, but he could barely breathe. In his faking, he started to sing like kids do… and out pops the marble from his throat. They had almost made it to town. The agent thought, 'what now?' No one is going to believe this. How am I going to explain it? I'll have to pay the gas to get back home, 'cause they'll think I just came here for the fun of it.
Cases like these are uncommon, but they cause great amounts of stress in health agents, because they do not know how to deal with them and feel that they will be punished monetarily and professionally for lapses. Resource use and distribution was a constant cause of complaint. The families themselves dis not show much trust in the professional health teams that would occasionally visit them. They felt that the visits were very brief, and that the form of contact -- the team would sit with the whole family or sometimes the whole community together -- made them ashamed to bring up more complicated or intimate health problems. "People are ashamed to talk in front of everyone in the community center. The teams should stay more time and talk with people on their own terms." These visits have clearly not built up the trust that local people need in order to talk through their health issues. People in many different communities pleaded for longer and more careful visits. A Nadeb woman told us, "It would be better if they could pay more attention to people, stay here longer and listen, and not just run around like chickens with their heads cut off." A Kuaiwá woman in Boa Vista explained that the health teams don't seem to understand the rhythms of the villages. "If a family is working in the fields, they won't wait to talk with them. They just go on to the next place, and we get no care." A Baré woman in Massarabi said that the health teams speak exclusively with men: "They should talk with women and children if they want to know about our health." Clearly, many health teams do not understand the schedule or the
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social dynamics of the communities they serve. People in the villages are extremely busy with fishing, planting, harvest, and food preparation and preservation: without these constant activities, they and their children will not survive. Many people complained that the health teams believe their work to be more important than the daily life of the community, and that everyone should simply drop everything when the health team arrived. The health teams also appear poorly prepared to deal with the interethnic reality of the villages, where inter-tribal marriage is common -- and in some communities, obligatory. The case of the Yanomami along the river is illustrative here: unlike the Tukanos or Tarianos, the Yanomamis were traditionally not exogamous: they would marry only within their tribal group in the mountains. In my research, I thus was surprised to find Yanomami families in Tabocal and Ilha do Chile. In one case, a Yanomami woman married a man from one of the communities I researched when he was employed in the military close to a Yanomami village. She is now pregnant and will return to her village to give birth close to her family and her four other children from a previous marriage. The indigenous families deal quite well with these intertribal Didn't complications, but the health system does not. This newborn reply baby, for instance, will be registered twice, further complicating already difficult epidemiological reporting (see chapters 3 and 8). Health care itself is also confused: there is a special health team that deals only with the Yanomami, and some families commented that it would come to a village, treat the Never Yanomamis in the community, and ignore requests for help from other sick people. The rapid movement of families from one community to another also confuses the health system. One mother who had lived in Tabocal told me that after she and her husband had argued during a festival, she took her children back to her own family in another village. Teachers, angry that she had taken her children out of school, removed her name from Bolsa FamĂlia eligibility. The
health team then ended up vaccinating her children two times, one in each village. I believe that these cases illustrate the failure of cultural training and understanding among health teams, especially as concerns the many different types of indigenous families. These children move with their parents -- who, following Rio Negro tradition, often migrate -- and depend on the work of their parents for food and attention. The complex dynamics around food -especially fish, the base of the local diet -- appears to be especially absent in the thinking of these health teams.
Food
When we decided to ask families if food was scarce in any particular moment, the question was designed to think about seasonal variations. Unexpectedly, many Is there ever a time you lack food? mothers offered another kind of answer: "We only lack for food when their dad goes on a bender," declared one mother. "When the dad drinks," a grandmother said, "that's when his wife and kids have no food. Other people have to help then, and now that he's drinking a lot, the kids suffer." A Tuyuka mother from another community told me, "When he drinks, then we depend on my eleven year old. He climbs the trees and picks açaĂ, and then we at least have something to eat." Though
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communities in the reservations have made efforts to limit access to alcohol, fish is the metonymy for food: game fish like Aracu, Pacu, and Matrinxá are it is readily available outside of the reservation. In some communities so important -- especially to the men who catch them -- that they stand in outside of the reservation, we saw some men drinking rubbing alcohol, a for all food. At one village, I asked an older man, known as a good problem so serious that fisherman, if he could sell any fish to us. "None around, it's rough," When is food lacking? no one seems willing to he replied. My research assistant and I then walked down to the edge address it. of the river, where we saw many small fish, and my research assistant Didn't reply When we speared a nice traíra. We walked back to put the fish on the fire, and followed through to ask the old fisherman said, "Sure, there are traíra, but we only eat those if there was less food at where there's nothing else!" Clearly, the category of "food" does not During the any time of the year, a have the same taxonomy in indigenous and Western cultures. We flood Only If you Never surprising 59% said "yes". should not, then suppose that when families say that food is scare don't fish Given the durability of during the flood, that it means that calories are not available. It is manioc farinha (the base simply that the best food, certain types of fish, are harder to catch. of the diet) and the I was reminded in these exchanges of a phrase from a ripening of many Tuyuka myth I heard as a girl: "The Rio Negro was never a river of cultivated fruits at hunger. The god of plenty gave everything to his people: resources, different times of the practices, techniques, knowledge…" (Higino Tuyuka, 2008:51). This year, this response seemed unexpected. The response of a Piratuia woman story reminds us that people along the river have always prided themselves in Cartucho helps understand the answers: on their knowledge to feed themselves and their children. When we look at the graph to the left, we see that the majority of There isn't enough food when the buia-acú comes around, the river's flood. Truth is, food is only people who say that food can sometimes be scares, cite the buia-acú (flood) as lacking if you don't work for it. The harvest is rich when you work here. But when the river is full the time it is scarce. During this time, many small fish that serve as bait are it's hard to find fish, you can only catch them at night. That time of the year, from May to June, there aren't so many fish. harder to find, and large fish withdraw into the igapós (the forest flooded by the rising river). Only a small number of people -- probably the In May through August, fish are harder to catch, because the river is "marupiaras," a nenheengatu word refering to great hunters -- claimed that the high and they have many places to hide. In November, December, and buia-açu didn't cause a problem, while people from the town, less dependent January, some men also complain that fishing is not as good. In general, on their fishing skills, didn't have much to say about the issue. however, these issues vary from community to community and from fish to fish: small fish like pupeca and curubiça, generally roasted in leaves, are still available even in the worst times. I soon found that when people said "food is scarce," the really meant "food is scarce if you don't work for it." There is a linguistic issue at work here as well: for many river people,
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Childbirth
pass on information and know-how to their daughters, and where maternal or paternal grandmothers officiate over blessings and child protection rites. People in rural communities consider these ritual blessings as the first and most important care offered for a newborn, as we will see below. After a good number of interviews, it became clear to me that the Women who live in town generally give birth in the great majority of children above five years old -- and Who cared for you when you were pregnant? hospital with the help of nurses and professional midwives; I did not hear a single case of home birth. Nuclear Familia Extended Family Shaman thus not formally a part of Grandmothers in Cartucho and Tabocal explained Health Agent Doctor Friends Others this study -- had been born in the blessing process in detail: Immediately after the baby's the rural villages with the help birth, the family will call on a person who knows how to pray of local midwives, over the child with tobacco, tar, and smoke. Both child and grandmothers, and shamans. mother will be smoked. The mother will then carry the baby These same people would care to a specialist to bless and breathe over the small body. For a for the new mother after birth. week after the birth, the mother and father must stay closed In contrast, the indoors with the baby, the "resguardo", translated here as majority of children under five seclusion.. The mother may not eat anything considered to be years old were born in slimy (catfish, fish with spikes, piranha, honey; salted fish is hospitals in S達o Gabriel or also generally prohibited). Traditionally, the blessing Santa Isabel. In early professionals would even smoke the area pregnancy, mothers still counted on the help of traditional where the mother and baby would first medicine, but as the gestation came to term, they would come to Blessing is considered bathe. "You have to bless them, you have depend more and more on health agents and nurses. Upon the to be supremely important to," one grandmother explained. "The return to their communities, traditional structure swould once because it helps to protect whites have a different way, so maybe it again take over. Of the few cases where babies are still born in the the bvaby and h/er whole doesn't hurt them not to bless, but if we communities, it seems most common that it happens before term, family. If the family does not don't bless the baby, things go bad." when mothers are going to or returning from the fields, bathing in the follow the seclusion rules, Hospitals do not respect these cultural river, or even in transit to town. In these cases, mother and child are everyone runs a risk... traditions, something shocking to both new cared for by close relatives. Some women still choose to give birth in mothers and their own mothers (the the community, often those who are especially adept themselves at babies' grandmothers). Immediately after birth, mothers and babies are herb-lore and traditional medicine. Diegues (2000) defines this traditional forced to take a bath, and they believe that this weakens the child and the knowledge as knowing and know-how, combined with respect for the natural mother. Food prescriptions are also not attended to. "In the village, we world, transmitted orally from generation to generation. In the communities always watch after food. For a week, the mother only eats cream of manioc, I studied, this kind of knowledge demands close knit families where mothers
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and that only after being blessed. The father can also only eat blessed food. You have to be very careful with a baby's health!" These social practices have been adapted to begin after the return to the community, and now vary between four days of seclusion for the father, up to 40 for some mothers. In the time they are shut up with the child, neither father nor mother may make a physical effort. They may not make fire nor carry heavy weights. After the father's seven days of seclusion are over, he will prepare the food for the mother. They dedicate the moment to the newborn child, taking every possible care. The blessing is particularly important because it protects the child and the family. Those who do not follow the alimentary, ritual, and closing prescriptions put the health or life of their child at risk (Dutra 2010: 138). A Tariana woman in Cartucho explained that "You have to get the shaman to bless the mother, father, and child. Then seven days of seclusion for the father, and 40 for the mother." In Massarabi, mothers also insisted that one had to take particular care of the child's navel and umbilical cord, and that the mother could never go out in the dew of nightfall. "By blessing the baby, you can make sure that it won't cry too much over it's navel and umbilical cord." In the town, we see few of these rituals for protecting babies; the mothers there spoke most of the need to vaccinate their children, to keep them clean and bathed, to keep mother and baby well rested, and to look after the umbilical cord. Only one person spoke of blessing the baby, so people continue to have some memory of the practice, but it is no longer common.
Comida da Criança
It is interesting to see how the diet for small children is different in the town of Santa Isabel from in the villages. The above table summarizes the most common foods listed in town, in villages outside the reservations, and in villages inside the reservations. Until six months of age, most babies only nurse; after that, their diet will be supplemented with manioc porridge. In the villages, a shaman will always bless the child's first solid food, generally fruit, game fish (catfish or piraĂba), small fish with scales, and sometimes meat. Soon afterward, mother
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Water
will add açãí juice to the diet, as well as wild birds like toucan and parrot. A Baré woman in Boa Vista insisted that japu (a type of oropendula with an amazing song) "is the best food of all for kids." When teething, children eat fish, manioc cakes, manioc flour, tapioca, and fruit. "They can eat slick fish when their teeth start to show." Other mothers said that when children The Rio Negro drainage is the largest river on the left bank of the begin to walk is another landmark, allowing new foods: açaí juice, bacaba, Amazon; it begins in Colombia, where it is called the Guaínia, is connected buriti fruit, and manioc porridge. to the Orinoco through the Cassiquiare canal, and drains 71,438,267 Other people interviewed said that between six months and a year of hectares. The plurality of families interviewed for this study get their age, children could begin to eat anything, as long as it was blessed. Other drinking water directly from the river and do not treat it. Health agents have, informed me of certain prohibitions. "Kids cani't eat slick fish (with leather in Tr the past, distributed sodium hypocloride, but this is uncommon today, in ea skins instead of scales), because people say it spoils them," an older part because the DSEI does not provide ted Water Baré woman informed me in Cartucho. One of her colleagues added W enough to the agents. at e r prohibitions on catfish, caiman, and turtle. I heard similar ideas in Fa Only two of the villages have wells -uc other communities as well. It appears that the age of four marks an et Areal and Cartucho -- where the first was Ra important new stage: "Before that, they can only eat blessed fish. After in dug by missionaries and the second by Sp r in that, anything goes." researchers who wanted to give something g St r ea Though there are fewer fruit prohibitions, some do exist, like back to the community. At the time of my m that against ingá: "When a child has a cold, it will get worse if he eats research, the Cartucho well was not used ingá," a mother told me in Boa Vista. This mother, and many others, because the pump had been burned out. take extreme care with feeding their children, always observing what The great majority of mothers and River Well happens after they eat new fruits and fish. fathers do not believe that water can cause I saw very few differences between the different communities, illness in their children: 63% said that it in spite of regional, ecological, and ethnic differences. In town, however, care around food was greatly reduced. I saw that indigenous Does contaminated water Which illness? people who had come to the town continued to practice food prohibitions make your child sick? and blessings, but that they did not wish to talk about these traditional Others practices. In town, mothers were willing to talk about child care only in terms that would make sense to a university educated doctor, unlike the Diarrhea repeated emphasis on blessings that I heard in the countryside. Another major difference between children's diet in town versus in the villages is that several children in town spent some time in public or private day care centers, where their mothers did not have complete control over their eating.
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does not. Of the 31% that affirm the connection between contaminated water and illness, 63% of them think it causes diarrhea.
Illnesses
When asked what sicknesses their children had suffered, mothers and fathers reported 18 different health problems, as we see in the adjacent chart. The most common problems were flu, diarrhea, malaria, vomiting, eye pain, fever, toothache, and skin problems. Several families also reported that their children never got sick. Most mothers described these illnesses as having occurred in the past, but I did see several sick children while I was in the field. Among the
families I interviews, , no one reported a child's death in the last five years. I gathered the information at the lower left of this page about the six deaths of children than people mentioned. Food and ritual are the two most important ways that people in the villages make sure that their small children don't get sick. Many parents also spoke of the importance of the mother and father being secluded with the child during the first weeks of its life. Others talked of "closing the body" of the baby. "You have to take the child to the blesser when the kid is tiny,
Number of illnesses, organized by community
Reports of Children's Deaths
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Flu
Malaria Pneumonia Nothing Vomit
t al To iaรงu a 2 Ta bad bi U รก as s ar a ho M r tu c l Ca boc a s t a Ta a Vi Bo RNN SI ile a C h a r ic o t M
Ashthma Coqueluche Skin Headache Bellyache Fever Throat Anemia Chickpox Diarrhea Stomach Toothache Eye Head wound
or when scared," a 37 year old Baré mother told me in Cartucho. while her Desana neighbor insisted on "blessing the mother too, watching out for what food you give the child, and keeping the parents secluded after the birth." The child's body will be "closed" through the bharceyé ritual, which will make him or her immune to the flow of "evil things" like illness, accident, and poinsonous animals. This process happens when the kumu (blesser, shaman) places a kind of spiritual wrap around the child to prevent bad things from passing into the child's "open" body. Many parents pointed out that when new parents did not practice the weeks of seclusion after the child's birth, many bad things could happen. A Baré woman from Cartucho told me the following story that worried her deeply:
"This distance comes about in great part because of the general tendency of today's society to accept only knowledge constructed in the academy, and in part from the incapacity to understand and think through the values and decisions taken in other cultural contexts. (Rozemberg 2007:98)
This value placed on academic knowledge may help to explain why families in the town often continue traditional practices but don't want to talk about them: the disconnect between experience and the knowledge of the other is clearest in town. We should think about the seclusion and other social practices when we consider the way that health teams work in the community.
"Está bem..."
We see here a clear disconnect between cultural norms and bureaucratic demands. We see the same situation with the paternal seclusion, which few employers, doctors, or other professionals see as important. In some cases, fathers have been able to leverage the idea of paternal leave into seclusion. One father told me that his child was often sick because he had not been allowed to participate in the seclusion.
Areial
Foto: Rosilene Fonseca Pereira
When I had my last child, I was studying. I wanted to keep the seculsion, so I went to the teacher and ask to be excused for the 40 days. She said I had to have a note from the doctor. So I went to the doctor and he said no. So I couldn't keep the seclusion."
When asked if their children are well, almost all of the families said that they were; only a few mothers, whose babies had diarrhea or the flu, responded to the contrary. Being well seems associated with eating well, playing and relating well to other children in the community, being happy to go to the river to bathe, and their excitement at jumping, running, and playing. When children withdraw from these games and from their friends, their mothers see them as unwell. I cite one of the more interesting comments in full here: My daughter is well, she's a pain in the butt. She runs and plays and is happy. I don't like her to play in the mud, but jumping in puddles makes her so happy. She performs well, likes to play with her brothers and sisters and her friends. She makes friends easily and she likes taking baths, eating good food. She's great with her friends. Sundays, she and her friends are always out playing.
These comments summarize many ideas I heard about what it means to be a healthy and happy child.
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Looking for a cure
Who first cares for your health? Nuclear Family Shaman Doctor
Extended Family Health Agent Friends
to outside experts: "One time my twins always died. I took them straight to the shaman, and he said they had manatee disease.. The shaman covered them with pitiĂş fruit and they got better, but it's only that kind of shaman who can cure it"
"My daughter is ten now, and she was normal when she was born, but when she was three months old, she got sick with fever, and when a storm came she just passed out. The health team said I had to take her to Manaus, but there in the hospital she didn't even more, She was going to die. I didn't want her to die in the hospital, so I found a man who could bless. After that she got better, even if she never learned how to talk. Whatever: she is my daughter and I love her as she is.
When parents see their children sad, listless, or not wanting to play, they begin to suspect illness; when they play and eat and nurse and crawl, they are seen as healthy. This difference helps parents to diagnose a problem. The first step will always be home remedies. If these herbs and other techniques don't work, the parents will seek out a rezador (local holy man or woman) and then, as a last resort, go to the health post. Local cures are also often seen as prevention: "When he was only two, he got so sick I took him to the shaman. The shaman closed up his body, and he's been healthy as an ox ever since." This path is not constant: The flu is almost always treated and cured at home, while emergencies and accidents merit direct attention from the health agent, as was the case with the boy who swallowed the marble and another boy who swallowed ant poison. Some other cases, like the two listed below, pass outside of traditional medical knowledge and must be passed on
Massarabi 68
Foto: Rosilene Fonseca Pereira
In the villages, children play in many places, though perhaps most often along the edge of the river: swimming, playing in canoes, splashing. They often play in the shade of community fruit trees and love to climb trees in the village or at the edge of the river. Children also play in the fields where they go when their parents are working. They are always with their parents, something quite common in rural indigenous families, which both protects the children, passes on culture, and educates. I almost never saw a solitary child in the villages. When ask to list children's favorite games, parents reported: canoe, ball, soccer, dolls, earth, drawing in the sand, monkey, slingshot, marbles, hopscotch, "sparrow", and inventing their own games. Older children play these games outside, while younger one may be kept inside, especially if their parents are working indoors. I found some children who never play outdoors.
Both sets of parents explained that the problems first emerged because they had failed to observe all of the ritual care that they should have after childbirth, so they tell other parents to take these precautions seriously. To care for a child is to watch after its food, make sure it is blessed, and to close the body. Most parents only take their children to the formal health system when other cures don't work. Home remedies are the first step, then the shaman or rezador; only when they cannot resolve the problem will the family go the health post. A BarĂŠ woman from Cartucho told me, "Last year my six year old got diarrhea, and I tried everything but she didn't get better. Finally we had to go to the health agent and we all took her to the hospital."
beneficiaries buy in his store. Rural and town families face the same problem. Almost no-one knew of the conselho tutelar.
Most patents found getting a birth certificate and live birth certificate to be simple. Most say that they were treated well when they went, but many complain that they had to spend many days in town to wait for the documents, and that food and housing were difficult. The most common problem was that the clerks spelled given or family names incorrectly. Most families get the Bolsa Familia, those that live in the villages and those that live in town. Unfortunately, the only ATM where they can withdraw their benefits is in a store, and the store owner demands two reais for every use of the machine and makes
Tayaçu 69
Foto: Rosilene Fonseca Pereira
It's just that she never learned to eat, just to drink milk."
s n o i s u l c Con
Conclusions
The communities I researched in the middle and upper Rio Negro probably represent well the issues faced by many villages in the Amazon, perhaps even many indigenous communities in Brazil. Issues of seasonal food variation, problems with potable water and treatment, and infrequent medical attention are challenges in health care and public health for many rural people. I believe that most of these problems do not have their roots in bad public policy, but in the inadequate realization of the policies that are on the books. Several simple solutions could make a huge impact in the lives of these communities: 1. Drilling wells and providing mechanical pumps (and the know-how to fix them) 2. Health education in the villages 3. Training health teams in respect for local communities 4. More frequent and longer visits by health teams 5. Accurate census of village populations, to better stock medicine, first aid kids to health agents, and water purification drops 6. Treatment for low-level illnesses in the villages 7. Better collaboration with the Pastoral da Crianรงa
These small-scale measures could have significant impact on community life and health. In general, however, the DSEIs and other health organs must first take their own policies and projects seriously, actually doing what they are responsible for, and what they say they do.
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L
5 r e t p a hC
Lábrea
Willas Dias da Costa Thereza Cristina Cardoso Menezes Rancejânio Silva Guimarães
ábrea sits on the banks of the Purus River in the Southeast of the state of Amazonas. The region has been the scene of many experiments and failures in the history of Amazonian development, and brings together a diverse mosaic of indigenous groups, the intense presence of rubber-tappers and other extractive industries, and the attempt to integrate the region with the rest of Brazil through new roads. With the migration of poor people from the Northeast into the region in the inter-war period, the Purus also served as the cradle of new social groups like ribeirinhos and extractivistas. The Purus valley has long been occupied by many indigenous groups. From the date of European conquest through the 19th century, the area was little explored, represented on maps only as a line running parallel to the larger Madeira river. In the 17th and 18th Century, there was a limited penetration into the river drainage as people looked for the "drugs of the jungle" -- spices like urucum, clove, cinnamon, pepper, cacao, guaraná, nuts, and other luxuries in the Portuguese economy -- but these explorers stayed largely below Lábrea, and did most of their work by enslaving indigenous labor (Reis 1997). Several jesuit missions into the interior failed. However, the end of the 19th century, with the industrial revolution and the need for rubber, changed everything. The Brazilian government promoted the exploitation of the rich rubber trees of the middle and upper Purus, and supported efforts to improve navigation on the river both to get laborers to the trees and to bring the rubber down river to Manaus. In the 1870s, droughts in the Northeast of Brazil served as an additional incentive for the first huge wave of migration into the area, as the government promised quick wealth to men willing to work tapping rubber. Very quickly, Lábrea became one of the most important rubber producers in the state.
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as tappers were forced to migrate into the towns and cities of the region: at this time, Lábrea grew quickly, as did Manaus, Porto Velho, and Rio Branco. Other tappers moved into small communities at the edge of the rivers to have better access to commercial routes, while others began to cultivate the beaches along the river as the flood receded every year.
Rubber tapping led to violent conflicts with the indigenous population. The rubber trees were distant from each other, demanding paths and roads through the forest where the indigenous people lived. Encounters between rubber tappers and indians were often violent, and some indigenous people had to flee deeper and deeper into the jungle in order to flee the migrants, their guns, and their diseases. Other indians were forced to work in the rubber industry. During this time, we see the first reports of malaria, now endemic to the region. From the end of the 19th century until the 1980s, the Purus continued to be an essential rubber center, but with 1980s and 90s, serious change came to Lábrea. The Federal Government changed its long standing support and promotion of rubber tapping; without easy credit and price supports, few rubber barons were able to continue their work with the profits they had come to expect. The rubber industry collapsed. With the end of rubber as a way of life, many men who had worked
s i s y l a n aD ta A
Research on Children in Lábrea
We conducted the data collection for this project in May and June of 2013, working in the Fonte neighborhood of Lábrea and in the village of São Paulo in the Extractive Reserve of the Middle Purus. We registered interviews with 88 families who had 151 children between 0-5 years of age. The researcher and his assistant worked together on the questionnaires; Willas Dias -- doctoral student at the UFAM -- was the lead researcher, and Rancejânio Guimarães -- masters student at the same university -- was the assistant. Both are doing their academic research in Lábrea. The researchers walked through the community of Terra Solidária, part of the Fonte Neighborhood, and spoke to the parents or caregivers of small children in almost every home in the community.
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Food
We saw clearly that familes in both the town and in rural areas base their diet on fish and manioc flour. The Purus is an extremely rich region for fish, and local fishermen told us that something like 60% of the fish sold in Manaus come from this river. Coomercial fishing has taken a toll on the fish stock, and we heard complaints from many fathers that it is harder and harder to catch fish to feed their families. They say that they see many fishing boats from Manaus and even from other states. It is difficult for traditional hook and net fishermen to compete with the technological sophistication of these modern fishing fleets. When the rivers rise and make fishing more difficult, many families in Terra Solidária depend on canned
food.
TerraSolidária
Foto:Willas Dias da Costa
In the process of the research, we partnered with many local organizations, among them the Focimp (Federação das Organizações Indígenas do Médio Purus), Cimi (Conselho Indigenista Missionário), OMIMP (Organização das Mulheres Indígenas do Médio Purus), and the Lábrea Diocese, especially its Pastoral da Criança. We also worked with indigenous groups from the Paumari and Apurinã, with the municipal health secretariat, and with neighborhood associations. We chose these two regions to research because of the high percentage of small children and because of the importance of the relationship between the countryside and the town; Terra Solidária is the home of many recent rural and indigenous migrants. An indigenous reservation shares a border with the community (TI Catitu) and people in the rest of the town call it "Indiantown." The community was developed recently by local Augustinian priests who saw the need for housing for rural migrants; they created Terra Solidária with help from donors in Spain. These homes are given on a year-to-year basis to poor families, with renewal guaranteed if they don't break the community rules.
71 of the 88 families interviewed said that mother's milk is the prime food for small children; however, this fact seems to emerge more from traditonal practice than from the government programs promoting nursing. When children stop nursing, they move quickly to a diet very similar to that of the adults in their families, especially fish. We generally interviewed people in the morning and the afternoon, and during both sessions, we were able to observe how people cooked and ate. As we watched the preparation of lunch, the principal meal of the day, we saw that fish and manioc flour were indeed the principal source of nutrition. With the increase in the number of families that receive the Bolsa Família, some families also add rice, beans, and pasta bought in the store. In both Terra Solidária and São Paulo, many families have fruit trees in their yards, an important part of the diet. We occasionally saw children eating industrialized food -- cookies, crackers, canned food -- but this is uncommon. In many cases, children ate
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only fish. Fathers spend a great part of their time on the river to catch this daily food; for this reason, we were able to interview very few fathers. They were seldom present during the day. When the river is low, we heard that a good day of fishing can provide fish for two days of meals, but in higher water -- as when we were in the field -- catching sufficient fish requires long hours of work. Some fishermen sell their fish in the streets of Lábrea, but most fishing is subsistence. When we ask if there was ever a lack of food for the families, most people talked of the flood, when fish are harder to catch. Others, more dependent on the Bolsa Famíla for their income, mentioned the end of the month, when the money from these benefit had run out. Very few people reported that they prepared for these problem times; it seems not to be part of the culture to worry about these lacks before they happen. Volunteers from the Pastoral da Criança weigh and measure children to chart their growth; in interviews with these volunteers we heard different conclusions. Some volunteers reported that almost all of the children they charted fell within the median, while others were concerned at the high level of malnourished children. We believe that the volunteers are poorly trained in understanding their measurements: they are trained to measure, but not to evaluate. Official data from 2004-2011 claim that malnutrition in Lábrea is under 2%, but even the most sanguine volunteers dispute this data.
State Programs
Few people in Terra Solidária get a monthly salary, and almost all that do are employed temporarily by the mayor's office. City Hall offers employment based on political demands and in exchange for political favors; they do not make a formal employment contract and can terminate employment at any time for any reason. Given this situation, it is not hard to believe that 81% of the families we interviewed get the Bolsa Família. The families report that the system generally works well, though many mothers
complain that the benefit is insufficient to buy food for a whole month for a large family, especially when the flood makes fishing more difficult. Many people in the center of the town complain that the streets are full at the beginning of the month when families come from rural areas to get their money from the banks. When asked about documentation for children, most people said that the process was easy and quick. When we went to a notary public, we saw that families of newborns are, in fact, quickly and well attended. We found only problems for children born far from the town. These families might delay months between visits to Lábrea, and seldom would they have a livebirth certificate, easy to get in the hospital but a real challenge in the interior. Only 11 families (12% of the total) were unable to get a live birth certificate, but all of them were in rural areas, where the midwife was not permitted to (or did now know how to) emit the certificate. Without this certificate, it is hard to get a Birth Certificate in the Notary Publics. And without a Birth Certificate, the child will have no access to Bosla Família. In some cases, the Notaries would accept vaccine documentation or a baptismal certificate, which then made it possible to get the all-important Birth Certificate. Mothers-to-be are aware of this problem, and many of them changed their birth plans to facilitate documentation. Many reported that they came to town for the last weeks of pregnancy so that they could give birth in the hospital and ease their access to documents and the Bolsa. They reported that before the Bolsa, when documents were not so important, they would often wait for years, and allow several children to be born, between bureaucratic visits to town. Indigenous families reported that they also got the RANI (Register of Indigenous Birth) and that the document came through the FUNAI easily and without problems.
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Childbirth
medical care. We noticed in many different contexts that people have never learned to complain about the service offered by public institutions. It's bad, but they always expected it would be. When we asked what would be a good standard of health care, again many women did not wish or know how Many of the question in the interview had to do with care for to answer. Several women asked for more attention from the doctor, a larger mother and child before, during, and immediately after childbirth. We number of doctors, better attention in discovered that 69% of mothers had no pre-natal care. In the health posts at night, and more addition to this worrisome number, we also saw that women and Who looked after you careful diagnosis of health problems. health agents are very concerned about the weakness of when you were Though most people were not emergency services if something goes wrong. many young pregnant? accustomed to criticizing, these mothers also complained of insulting treatment in the hospital. answers -- and the tone of many It appears the the age of the mother has a great impact on people who did not wish to respond -how she is treated in the hospital: young women get less attention made it clear that very few people were and are often victims of severe prejudice. We heard stories from really satisfied with the care they saw several different teenage mothers that the nurses would literally offered in the hospital or the health jump on their stomachs in order to force the fetus from the womb. post. Others complained of insults and abuse. "Hurt now? Shoulda When we asked who cared for women thought of that before you fucked around!" one young woman said during the pregnancy, we got the she heard from the nurses. "Now you'll get what you deserve, little Family Husband Mother Midwife Me Shaman Nurse Doctor following answers: whore," a nurse shouted at another young woman. This kind of abusive language was not something that happened only with single Where was the child born? mothers, but also with young married women and even indigenous Who helped you in the women, whose culture encourages early marriage and reproduction. hospital? Women over twenty years old told another story: they were Home generally much more pleased with the quality of their treatment. Doctor They also said that when they complained, nurses and administrators Family heard their complains and tried to do something. When we asked Nurse these older women how their treatment could have been better, seven Hospital Midwife of them requested more attention from doctors, and not just nurses and auxiliaries, while six said that nurses needed to learn how to deal with the public better. Many women did not want to respond to this question, either not knowing how or not being able to criticize
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Nurses appear as the most common professional pre-natal caregivers, looking after 36% of pregnant women who said they had care, but even more women depended principally on their families (45%). 14% of pregnant women got care from midwives, who both oriented and cared for them. In the city, few women talked of midwives, but in the Did you get Post-Natal Care? countryside it was the most important support. It is interesting to Yes note that while 75% of No women gave birth in a hospital, only 28% of these listed a doctor or nurse as the most important person who accompanied them at this time. We know that doctors and nurses are present in the hospital during childbirth, so this datum confounds our expectations. We see two possible explanations: first, that professionals simply are not present and are not doing their job. The second is that their presence doesn't merit the name of "care" or "support." What is certain is that this statistic gives a shocking portrait of the hospital when women give birth. 32 women -- 37% of the total who responded to the question -- had suffered a miscarriage. Of these 7 suffered two miscarriages and four suffered three or more. Many of these women, especially those with multiple miscarriages -- live in communities far from the town and its health care system. Here we should also mention how the promotion of hospital birth -- both explicit and through the need to get documents easily -- has weakened the traditional care given my midwives, grandmothers, and other women who know about pregnancy.
When we asked "what are the first precautions that one should take with a newborn, many women didn't, at first, know how to respond. As we explained better, women talked of many different things: nursing, vaccines, baths and hygiene, care with the umbilical stump, feeding, care in holding and moving the child, avoiding ill people, care with sun and wind, not to go out in the first months of the child's life, and teas and herbs to avoid illness. These responses mix traditional medicine and modern occidental knowledge about newborns, though modern medicine seemed generally less present. We saw that knowledge passed on by their own mothers -- the babies' grandmothers -- was an essential aspect of knowing how to deal with the challenges of a newborn. Many of the women interviewed here had their first child when they were teens, so the experience of their mothers was essential to looking after their babies. In spite of the positive stories we heard form several older mothers, the general portrait we saw is that pregnant women receive terrible medical care in Lรกbrea. In the countryside, though there are more problems with miscarriage, women speak of their midwives with respect and gratitude.
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Medicina e Crianças
1. The two communities where we worked have health agents with years of experience, people who are dedicated to their work. In both of these communities, the Pastoral da Criança is very strong, with many volunteers. Both of these groups -- the Pastoral and the Agents -care deeply about vaccines, and they make sure that families get their kids vaccinated.
If medical care for pregnant women is poor in Lábrea, we can say little better for the care given to small children. We can see, for instance, that when parents take their children to the doctor's or the hospital, fewer that 30% of them were ever seen by a university trained doctor. When we look at these stats more carefully, the results are even worse than they appear: many of the positive responses came from indigenous families, who participate in 2. The Federal Government runs the vaccination program, while the a parallel medical system. Fifteen families said that they had gotten a municipal health foundation -- rife with corruption, patronage, and doctor's visit in their homes, and another 15 had seen a nurse, but almost all inefficiency --runs the hospital and health posts. There is real, of these families were either Paumeri or Apurinã. Of independent oversight and accountability When your child is sick, whom do you the non-indigenous families in Terra Solidária and São in the vaccination program, something seek out? Paulo, almost none had gotten a visit from a doctor at completely absent in local home, and very few had even been able to see a administration. professional when then went to the hospital or to a Family health post. It is interesting that while the system does not Shaman When we look at this data in conjunction with work for most poor families, when asked they Doctor Hospital the information about childbirth, we seem to see a still say that they depend on doctors, as we see Pharmacy medical system without doctors or other in the adjacent chart. Health Agent professionals. The contrast between this answer and the Information on dentists points to something number of children actually seen by doctors in even worse: when asked if their children had even been to the dentist, 20% striking: more that twice as many mothers say they go to the doctor when of mothers said yes, but when we followed through, we found out that six of there is a problem, than the number of children who were ever cared for by these cases had been children who went to the dentist's office because their a doctor. We believe that the response marks a kind of ideal or wish: if the parents were being treated, not because the children were cared for. With system actually worked, we would like to see doctors for health care. this in mind, we see that only one in 10 children had any kind of dental care. When we look at the responses with more care, we see that the In contrast, the vaccination program functions well. 95% of children therapeutic itinerary is quite complicated. In almost every case, the trail were up to date on their vaccines, and of those who were not, almost all of starts with a mother observing her children (though in 5 cases, mothers them lived far from the municipal seat. conceded that the grandmother is the first to make a diagnosis). They say Why does the vaccine program work, while health care is such a that they know their child is sick when he or she "no longer wants to play" or disaster? We offer two hypotheses for this essential question: "is sad and quiet." Other mothers pointed to lack of appetite as sign that
77
ComunidadeSรฃoPaulo
something was wrong. No family measures if the child has a fever. When we asked mothers what makes their children healthy, 49% weren't able to respond. We don't know quite what this means: it may be a communication problem between the interviewer and the mothers, that they simply didn't understand the question. It might also indicate that they did not have a preventative What do you do to keep your child healthy? approach to health, and did not act in a way to Prayer keep their children from Tea Good Food getting sick. Among the mothers that responded, Hygiene Pharmacy we got the numbers Medicine represented to the left. Nothing Inside people's homes,
Foto:Willas Dias da Costa
Illnesses in Lรกbrea
Pneumonia Diarrhea
Flu
Vomit Parasites
Ear
Fever
Asthma Malaria Vento
Alergy
Airless
Hep B
we observed that mothers and fathers really did quite a lot to keep their children healthy. Many (often at the recommendation of the Pastoral da Crianรงa) kept small gardens with medicinal herbs. Hygiene was also very important, as was sufficient food. Perhaps, however, mothers do not connect these practices with the prevention of illness. Though mothers talked of many different illnesses that their children had suffered, most of the problems fall either into the category of flu or diarrhea, as we see in the chart above. It is interesting that though diarrhea is one of the most common health problems, very few families connect it with bad water. Malaria appears as the third most common illness, but it is perfectly possible that many people who spoke of flu or fever were really referring to malaria, which can have very similar symptoms in children. In conversations with parents, we saw that many parents take their children with them on long expeditions into the jungle, where they harvest Brazil nuts, rubber, or other goods. In these areas, malaria is endemic. In many of the poor neighborhoods of Lรกbrea, one sees malarial mosquitos at twilight. Respiratory illnesses like asthma and pneumonia occupied a lower point on the list, but the fifteen cases are notable when compared to the other two municipalities we studied, where few parents told the researchers
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about a lung disease. It would be worthwhile to understand why this would have a higher incidence in Lábrea.
use the hypocloride, few understand the connection between contaminated water and diarrhea. And of this percentage, many live in São Paulo, where the agent makes a big deal of education on water. When we compare these data, we wonder whether people use the hypocloride simply because they are used to obeying authority, or perhaps because they trust the health agent. It also may be that many people say that the put the hypocloride in the water, Though water and sewage are very problematic issues in Lábrea, we because they know that is the "right" answer, but in fact they don't do what do see some small efforts to deal with the problem. When the Diocese of they say. Lábrea began to build Terra Solidária, Because Terra Solidátia was constructed by the church in for instance, it drilled a well. The well recent years, the architects considered the issue of sewage. This is How do you prepare drinking water? provides water to alternative streets, two very uncommon in Lábrea. When they build the homes, the hours at a time, but it is not purified or church and its Spanish funders put a pit outhouse out back. In Hypocloride treated. Though this is hardly a perfect rural areas, the river is the bathroom, though many families did solution, it is much better than we saw in make a point of saying that they get water far from where they other neighborhoods, where people excrete. Nothing depend on water from the river or on their own efforts. There is no municipal water works. In the rural area there are Boil Filter no wells: people who live there say that the municipal government tried to drill, but that since they are on the floodplain, it did not work. Rural families get their water from the ricer, from local streams, or from the rain. Many families themselves treat the water before the drink it, As we talked with mothers and fathers in Terra Solidária and São something we did not see in other municipalities. Paulo, we observed many children who were seriously ill: diarrhea, malaria, Health agents in Terra Solidária and São Paulo not only distribute parasitic infections, fever, allergies, flue, anemia, and even epilepsy. hypocloride religiously, but also make sure to teach people why it is Nonetheless, 90% of the families told us that their children were "well," a important. As we see in "The Health Agent" in the video portion of this contrast that makes us think. project, educating on water quality demands repetition and pressure, as well First of all, it is clear that mothers and fathers in Lábrea see illness as as a relationship of friendship and trust between the health agent and the a normal part of childhood. Kids get sick, but then they get better. Parents family. Most people say that they don't like the taste of hypocloride, but they see their children's illness as something that comes and goes. When we still use it. asked parents to compare their kids with other children, most they said that Another strange datum in the research is that though most people their kids were in better shape than other kids. Second, it appears that there
Saneamento Básico
O dia-a-dia da criança
79
woman to find work in Lábrea than it is for a man -- but they lament that without a day care center or another way to look after their kids, it is impossible. Though child care in Terra Solidária seems traditional at first, the families differ from traditonal families in the lack of grandparents and other extended relatives. Many of these families are recent migrants from the countryside, either the Indigenous Reservations or the banks of the Purus. They came to the city in search of the Bolsa Família or for better or continuing education (high school only exists in the municipal seat). The extended family -grandparents, aunts and uncles -- did not migrate along with them. The families often return to their rural homes, keeping up an important link -- important for social and alimentary reasons -- but while in town, the cannot count on the support of their extended families. In Terra Solidártia, parents are not happy with the places where their kids can play: 92% demanded better places for children. Today, the home is the most common place where little kids play, and parents complain of the limited space and the lack of alternatives. Some children also play on the street, but their parents worry about cars and motorcycles; some also go to the river or a nearby steam with older siblings. Parents tell us that their children enjoy many different kinds of play,
TerraSolidária
80
Foto:Kurt Shaw
is also a lower expectation about children's health than we might find in other communities, so an illness that might worry a middle class mother could still be defined as "well" in Lábrea. Saying that a child is "well" might mean that at that moment, he or she isn't suffering from anything really bad: it doesn't demand serious worry from parents. This low expectation about child health may be positive in comparison to the worry of many parents, but it also means that few parents demand more from the health care system. Kids are supposed to be sick, so parents don't demand better care to make them well. The same would be true in terms of demanding clean water, sewers, or other public health measures. Finally, though they may have low expectation about health, parents in Lábrea do see childhood as a time of play and fun. As long as kids are able to play with others, laugh, and have fun, parents will say they are well. As a general rule, mothers care for children most days. Fathers leave in the morning to fish, and mothers stay at home cooking, cleaning, and looking after the kids. In 21% of cases, grandmothers or aunts care for the children, and in 7% of the families, older siblings are the prime caregivers. Only in one case did we see a child cared for by an unrelated neighbor. The logic of care, then, is quite traditional. Nonetheless, many mothers told us that they would like to work outside of the house -- in fact, it is easier for a
though most of them talked about playing with toys: dolls, play dishes, cars, and balls. Since many of the families in Terra Solidรกtria are recent migrants from the interior, the excess of cheap plastic toys is a positive novelty. We also noted a common local game among both girls and boys: simply running. They mark out a distance and then race each other repeatedly. In rural homes, toys are less common, but children play at other things, like swimming and climbing trees. Many families requested a plaza or playground in the neighborhood. The Lรกbrea central plaza, about half an hour from Terra Solidรกria by foot (perhaps more with a passel of little kids) attracts the attention of children and teens: on weekends the place is full of strolling families, young couples, visitors, a soccer tournament, and -- most Where does your child play? important for little kids -- a playground made of Yard Home inflatable games like slides and trampolines. Street Though parents know River of this park, they try to stay away, in part because of the distance, but mostly becasue they know they can't pay the price charged for the games.
s w e i v r e t In
Health Agents
The second part of the research project involved interviews with health agents. As with all professionals we interviewed, these two people asked to be kept anonymous for fear of consequences on the job.
Rural
Though he works in a rural area, this health agent lives in Lรกbrea, which means that every month, he must travel 12-16 hours in a small motorized canoe to get to the community. He then spends three days to a week in the community, talking with the families who live on the banks of the Purus. He has worked almost 20 years as a health agent; he loves his work and feels it to be important. He described his work as education, passing out hypocloride, and dealing with small medical issues. When asked about the challenges of his work, this agent first spoke of gasoline; it requires a lot of fuel to get back and forth between the community and town. In previous administrations, he often went for months without getting enough gas to do his work; for quite some time, they didn't even provide a motor. When this happened, he had to use his own money to buy gas to get to the community. Fortunately, this municipal administration has provided the gas he needs to do his work. Water is the key issue for this agent. He points out that the communities where he works have no wells because the are on a flood plain, so the only solution the health department gives is the distribution of hypocloride. He believes that distributing filters would be a much better long term solution. There is also no sewage system and no outhouses. People
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women ask for her help as they pass through pregnancy, as well as for women's health and issues around small children. Childbirth in the community is more rare every year, as more and more women prefer to give birth in town. Some of this change has come because of doctor's advice, and in part it depends on the ease of documentation for the Bolsa Familia. Only one child has died in the community in the last half dozen years. He was ill and his mother took him to the hospital by boat, but he never recovered. The agent believes that the mother's inexperience at diagnosing a serious problem made things worse, so today, he makes a great effort to educate new mothers and to accompany newborns. No women have died in childbirth since the agent began to work in the community.
In Town
AOnça quemeu avôcaçou 82
Foto:Kurt Shaw
burn trash and use the river as a toilet. The agent reported that though traders on the river have recently started to sell rice and beans, fish and manioc flour continue to be the base of the diet. Because the economy is subsistence, people have little disposable income with which to buy goods other than what they produce. During the six month dry season, the harvest is rich, thanks to an excellent agricultural system based on the soils left by the withdraw of the flood. Farmers need not cut a single tree, add fertilizer, or use pesticides: they simply plant and weed, then harvest squash, zucchini, tomato, beans, peas, manioc, and many other farm products. Families do not commercialize their harvest, and it lasts for only half of the year. The rest of the time, people continue on what they can store safely, as well as fish and game. Because of the agricultural system, there are no malnourished children where this health agent works. The health agent recommends pre-natal care for all pregnant women, but he recognizes that to get professional care, they must go to the municipal seat. In general, women use the local midwife as a caregiver for the first months of pregnancy, then at about six month of pregnancy, they will go to town. As birth approaches, many go to live in town with friends or relatives, so they can give birth in the hospital. The midwife does not live in the community, but in the indian village on the other side of the rive; many
The in-town health agent has worked the same job for four years, but it recently changed dramatically, because the new municipal administration requested that agents now pass by the houses every day, and not just weekly. This change occurred to better monitor patients who have been released from the hospital. It also helps keeping up with doctor's appointments and documentation. The health agent
complained of the lack of emergency services, pointing out that there was no ambulance to get sick people or pregnant women to the hospital. Telephone service seldom works in the hospital, and almost never in the health posts. He also commented that the health system is poorly prepared to attend children with malaria, though many of them catch the disease while they are with their parents in the interior. Where the agent works, water comes from a well. There is no sewage system, not even a septic tank, and no garbage collection. The agent collaborates with the Pastoral da Crianรงa to distribute a dietary supplement to young children, many of whom are underweight. He complained that few people follow his advice on public health, failing to treat their water and not using medicine and eating as he teaches. People are very reluctant to put hypocloride in their water because of its bad taste. This health agent always recommends that pregnant women get professional pre-natal care and to get vaccinated. He passes by their homes each day to encourage them to see the nurse at the health post. He says that postpartum care is offered at the hospital, as well as all neonatal tests. Without research in the community served by this agent, we do not know if these efforts have had better results than in Terra Solidรกria, where few women get pre or post natal care. He does not know of any babies or mothers who have died during his tenure, but he says that ten years ago, things were much, much worse.
s n o i s u l c Con
Conclusions
Lรกbrea is a conflict zone: conflicts between whites and indians, between traditional people and the new industrial agriculture coming from the south, between the more comfortable traditional townsfolk and the new rural immigrants who come in search of education and public services. Leaders from the Extractive Reserve told us they live under death threats from the ranchers who want their land, and only the Forรงa Nacional -- police and soldiers from other states who volunteer to defend them -- keep them alive. Labor relations seem like a nightmare left over from slavery: many people we interviewed inform us that they go into the jungle for 3-6 months to gather nuts and other forest products. They finance the trip with a loan from a local "boss", who will then demand payment with usurious interest and pay them almost nothing for their harvest. Each year, the debt of these rural workers only grows. According to the census, the top quintile earn 60% of the income of the city, while the bottom quintile makes less that 1% of that total. These statistics are twice as bad as they were in 1991. In this context, it is hardly surprising that health care is terrible in Lรกbrea. The municipality is in the middle of a conflict over who has the right to resources, whether natural -- fish, land, minerals -- or the government resources that come into the town. The traditional elite that has always dominated politics has yet to see a convincing reason to share these public resources with the people who live in rural areas or in peripheral neighborhoods.
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Part of our research does not represent a real portrait of Lรกbrea: the unique situation that led to the construction of Terra Solidรกria means that it has better water and sewage than many communities in the town. In the rural area of Sรฃo Paulo, a dedicated and experienced health agent gives support that few other rural communities enjoy. The results of this study are damning, but had we done them in other communities, they would have been even worse. Our research in Lรกbrea shows that the work of a good health agent can make a real difference in the life and health of small children. But it also shows that the formal health system, robbed of its resources by incompetence, corruption, and conflict, can truly fail the people.
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6 r e t p a hC
Atalaia do Norte
T
Inara Nascimento Tavares
he research conducted in Atalaia for Norte reached 150 families with more than 415 children; in the age range of 0-5 years old, there were 219 children. Interviews were conducted in April and May of 2013. In addition to residents of the town of Atalaia do Norte, we also interviewed families in two rural areas, SĂŁo Pedro do Norte and the BoiĂĄ Settlement. We also interviewed groups of Kanamari, Mayuruna, and Matis indians who live in the countryside but who were in Atalaia during the time of the research. The research team included me, a professor at the local campus of the UFAM, and three young intellectuals from Atalaia: Chapu Matis, a high-schooler and Matis indian; Charles Siqueira, a recent graduate in anthropology from the local campus of the UFAN; and Gildete FĂŠlix, a teacher's college student and the cook at the local school. This team discussed and debated the questions and learned to apply the questionnaire, using both quantitative and qualitative methodology. Because it is a small town, the researchers already knew many people, and they used this familiarity with the community as a way in. They also adapted the language of the questionnaire to better serve the local dialect, and Chapu Matis translated it into Mayoruna and Matis. When introducing ourselves to families, we always began by saying that we wished to "chat about kids"; we then registered the results of these conversations in field notes, which then were analyzed into the statistics that follow. With rural and indigenous families, we used a focus group methodology; among the Matis, we spoke with a group of three families encompassing 30 people, and then with Chapu's family. With the Mayoruna, the group was similar: 30 people divided into three extended families. With the Kanamari, again three families, with 25 members.
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The first two conversations occurred in the houses where the rural indians stay while in town; the final conversation occurred in the FUNAI. In the community of São Pedro do Norte, we spoke with a large extended family and interviewed several other families. São Pedro is a Kokama village, though this identity is in dispute with the FUNAI and with other indigenous groups. In the Boiá settlement, the focus group was with many families, in the fields where people were working. This community is migrant: during planting and harvest, they live in the settlement, while at other times they may live in town. We chose several particularly vulnerable neighborhoods in town. The Portelinha and Olaria neighborhoods, as well as part of the Centro, are very vulnerable to floods. The Ponte (Bridge) neighborhood is built on stilts above the water, with bridges instead of streets to connect the homes. The choice of neighborhoods came largely as the result of conversations with the municipal health council. The map on page 89 shows the "urban" areas of the town and the neighborhoods on which we focussed our attention. In addition to the concentration on these neighborhoods, we also did interviews in all areas of the town
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The Municipal Health Council, a 20 members civil-society and government collaboration, provided formal approval for the research; unfortunately, local politics were extremely unstable at the time of research, because the new Mayor had not yet appointed a health secretary and many health workers had been fired. We attempted to speak with all of the government programs in the city -- the town health secretariat, the Indigenous Health Secretariat, the health posts, and the hospital -- but because of these political problems, it was impossible to arrange a meeting. In many cases, there was simply no one on staff. As such, we learned of how these projects work through the staff members who still worked there from the previous administration.
Results
Results and Reflexions
Are they well?
"How is your child? Do you see him to be healthy and happy? How would you compare him or her with other kids in the neighborhood and in the world?" These questions were designed to break the ice and build camaraderie between the researchers and the families. Few families, even when their children were visibly sick, said that their children were unwell. Instead, most said that their kids were well and happy, with comments like:
Daiane, 2 years old “Yes, she's happy and well. She just has the chickenpox" Jânio, 2 years old “ Jânio is sick right now, but it doesn't happen often. He's in good shape!”. Ana, 4 years old and Carlos, 5 years old “They are healthy, because they don't suffer from any serious illness.”. Gabriele, 4 years old “Gabriele is healthy, and she doesn't get sick often. Just fever and flu. She's got a cold now.”. Kimberli, 4 years old, Laila, 3 years old and Lavínia, 4 months old “They're well, because they weren't born with any defects.”
We also heard some parents complain of poor health:
Luciana, 4 years old “She's not very healthy. She's always got a stomach ache.” Michelle, 1 year old “Michelle is always sick, always has the flu!” Hellen, 4 months old “Hellen is always sick, and you can't ever find medicine in the city pharmacy, not even respiratory therapy.” Bruno, 2 years old and Raina, 1 year old “They aren't well. They have the runs.” José Carlos, 2 years old “He is really sick and needs to take a prescription medication, but now there is none of it at the pharmacy.” Thalison, 1 year old “He's not well. Thalison has malaria.” Nataly, mother of Michelle, 1 year old - Professor, flu isn't for a doctor, for the hospital. I know the medicine they give at the health post, so I give it myself. Inara- But if it gets worse? Nataly: Oh, that's when I get worried. But that's how it is. There's so much badly cured flu here, that it's always around. They always have the flu.
These responses reveal serious problems in the health system (many families complain of the lack of medicines in the public pharmacy), and they also point to the most common symptoms of illness: fever, flu, diarrhea, and vomit. Seldom do mothers talk about the underlying illness that might cause such symptoms, just the symptoms themselves. Many people believe that the flu is seasonal, and comes with the rain. The common believe is that it isn't rain that cases illness, but being out in the dew at that time of year. When asked to compare their children with others, we got a large range of answers: Vitória, almost two years old “She is happy, she plays, she's intelligent. She's better off than many kids who don't get enough attention from their parents."
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João, 5 years old e Laura, 2 and a half “They are happy, they run and play. They're better than other kids who go swimming in the sewage.
Daiane, 2 years old “She's always fighting, but when she goes to the neighbor's house, she's always the smartest.”
Maria Eduarda, 4 years old “She's different from most of the kids on the bridge, because she doesn't like to play with everyone sles.”
Naiara, 2 years old “She's smart and keeps talkig, which is different from the neighbor's boy, who is much more quiet.”
Adrian, 2 years old “ He's just like other kids.” Sebastião, 3 years old. “He's the same, because no one is better than anyone else.”
These answers made us so interested that we turned them into a game at the final party to celebrate the research, where we distributed staple food to the 150 participating families. We asked the mothers (and one father) to write what they thought was special about their children. The attached photos are from the event.
Marlon, 4 months old “He's so happy and laughs all the time. I see so many other babies who cry and cry.,”
In a town where envy is feared and can express itself in the form of the evil eye, most families did not want to compare themselves to others. The most common responses we heard were like the following Antônio, 2 year old e Antonieta, 10 months old “My kids are the same as everyone else's. I wouldn't know how to compare them.” Manoel Carlos, 3 years old “He's just like the other kids.” Jorge, 4 years old “They are the same, because all kids are the same.” Natanael, 3 years old “He's like the other kids, because noone is different.”
Festa dasFamíilias 88
Foto: Inara Nascimento Tavares
Cristiane, 4 years old e Thalia, one year old “They're such bad kids, not like the neighbor's boys.” Ralf, 1 and a half “He's skinny. I try to make him gain weight, but he's always skinnier than the other kids.” Bruno, 3 years old “Man. is he smart in comparison to the other kids!” Samuel, almost 2 “He's always fighting. He gets close to another kids his age and he bites them. I don't see other kids do that.” Talita, 4 four years old and Julio 4 years old “In some ways my kids are better off than others. They have food, clean clothes, shoes… many kids don't have even that!”
ChildCare
2. Who watches after your kids during the day, at night, when things get tough? Who is around in the areas where they play? Are any of these people paid? Almost all child care is centered on the extended or the nuclear family; in most cases mothers and grandmothers are the day to day caregivers. At night and on weekends, other people (fathers, the grandparents, uncles and aunts) would give the parents a break and watch after their kids. Many mothers take GED classes at night, so they depend on others to watch after their kids. Older brothers and sisters also play an important role in childcare, especially for short parental absences, but even in these cases, there are always adults around. Some parents complained that the Conselho Tutular (the civil society/ government collaboration that oversees children's rights in Brazilian towns) had "butted in" far too much in this area. Some parents had been accused of "abandoning" their children: Mirian and Antonio, parents of Antonio (4 years old) and Antonieta (almost 3)) “It's a pain. They don't let you spank your kids and they tell you how to rear your kids. It's a mistake, and you can see the results with all of these kids lost in drugs.”
Raimunda, mother of José, one and a half years old. “I don't like that the Conselho gets in the way of how you raise your kids, so that now you can't put your kids to work, and that's a mistake. If kids don't learn to work the land, they don't know how to work, they don't know how to do anything.”
Though there were few "professionals" who
watched after children in this research, many mothers and fathers did pay a grandmother or an aunt to each after the kids, or occasionally a neighbor. The payments range from 50 to 300 reais a month. 3. Where does the child play? How could these playspaces be better? What games do they most like to play? With whom do they play?
The area beneath the town center is an area easily flooded by the rivers, with no sewage system. Houses are connected by bridges built by the people who live in the neighborhood. Families are frightened of letting their children play alone, because they may fall into the water. Though no family said that it had happened to their own children, everyone believe that many children had died that way.
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Children play at home, in the yard, on the porch, and around the house. One doesn't always see adults close to the children playing, though adults in the interviews insisted that there was always someone "watching out." When we came to the homes to "talk about kids", children would always receive us on the porch (a characteristic architectural feature of the homes in Atalaia) and then continue with their playing. Parents spoke often of the danger of the street and especially of the bridges. Though no mothers or fathers said that their own children had died in this way, most said that they knew other kids who had drowned after falling from the bridges or in the yearly
Ralf, 4 years old “He plays at home. I wish we had a big yard with a fence so he could play outside.”
Many mothers told us that rain does not cause the flu or a cold: the dew that comes at night does. One often sees children and teenagers running through the streets and playing in plazas during rainstorms; their parents believe this is fine. flood. Parents also expressed their fear of being struck by a motorcycle or having their children stolen. People shared a consensus that the street is dirty, sick, and dangerous. Even so, mothers cannot keep their children from playing on the street in the afternoon. Many parents told us of their fear of having children stolen. News stories have reported some cases of kidnapping in the area, and many parents mentioned a case of a child who had been stolen, and his body then "filled" with packets of cocaine to be transported across the border. When we asked the Conselho Tutelar, they informed us that there had been no known cases in Atalaia. Children play mostly with family and neighbors, and they have many games. Parents all agree that in the absence of good public spaces, the area around the house is the only one that is appropriate for children to play. Vitória, almost two years old “She plays in front of the house with José, her cousin who is 2. She runs, yells, plays with dolls. It would be great to have a playground.,"
Antônio, 4 years old and Antonieta, almost 3 “They play at home. It would be better if the house were bigger, or if we had protection against the flood." Izabele, 4 year old “Izabele is different from most girls, who want to play with dolls. She wants to play only with kites.” José, almost 2 years old. “He plays in the house, in a pail of water.”
Bruno, 4 years old. “I wish we had a yard to play in, because we don't.”
Isabele, 5 years old e Jânio 2 years old “They play in the house, in the yard. The street is so dirty! It's important to play in a clean place. In the yard, they play with balls.”
Jorge Daniel, 3 years e Hellen, 4 months “The house is on stilts, so they play under the floor, with the planks and the dirt. It isn't a good place to play, because there are so many cats and dogs with diseases. They also love to run, to play with sticks.”
Gabriele, 4 years old “She plays in the house and sometimes here in front. I'm afraid for her to fall in the water, because we're on the bridge. She loves to play with dolls." Rafael, 14 years old, Ana Flávia, 8 years old, Ana Carla, 3 years old, Natalina, 1 year old e Bruna, 1 month old. “They play here at home, on the bridge. It isn't right, and I'm afraid that they'll fall in the water or someone will take them.”
Mateus, 4 years old e Marcos, 3 years old “They play inside, because I don't let them go out. I wish we had a yard, with a fence. They like to watch clowns on the TV, to hear music.” Igo, 3 years old “He plays inside. If we had a playgorund here in Atalaia, that would be good.”
As we see above, many parents wanted a playground for their children. A private amusement park is set up in the Atalaia Plaza every weekend, with trampolines, an inflatable slide, and a pool full of small balls. Parents pay from 3 to 5 reais for 10 minutes of play. Besides this space, there are three basketball-soccer courts in town, all administered by the schools. Most of the time, they are used by teenagers and adults. "If you have eight kids, that playground means 40 reais for 10 minutes! Then there's a snack for them. I can only do that every once in a while, because it is terrible for a mother to see her kids who want something so much, and she can't give it to them. I don't even take them to the plaza anymore so I don't have to see them cry for what they can't have." - Ruth, mother of 8 children
Maria Eduarda, 4 years old “She plays in the house with her dolls and with the little dog she calls Cuddles. He's just a baby, too. I wish we had a good porch, a big one, because she doesn't like to play alone. ”
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Cuidados
4. When your child is sick, who do you see? And if that doesn't work? The therapeutic itinerary described in Atalaia do Norte starts with the family, then moves on through rezadors and other traditional doctors before reaching the formal medical system. The rezador is the keystone of the path that families travel to find a cure for childhood illness. Most of these illnesses are categorized as "quebrante" (the breaker"). "Fallen arch, the evil eye, and quebranto are illnesses known across Brazil, but seldom treated by western medicine. These illnesses are divided into local categories, with specialists to cure them and recognize the success of this cure. (Langdon and Wiik, 2010). In Atalaia, quebrante (the local form of quebranto) is divided in the following way:
to be taken to a rezador, and not "Doctors' illnesses." “It depends on the illness, When its a case for a doctor, I take him to a dorctor, When it's for a rezador, I take him to a rezador.” Charles e Danicélia, parents of Charles Luan, 1 year and 7 months.
“First we take her to the rezador, and if that doesn't work, we go to the doctor.” Janayra and Dangelo, parents of Natally, 1 year and 5 months.
“First I go to the doctor. When that doesn't work, I know the rezador will fix it.” Eliza e Raimundo, parents of Greice, 7 years old, Francisco, 5 years old, Raimundo, 3 years old and Augusto, 4 months.
“The rezador doctor, he'll know what the illness is, and if it's a praying illness like quebrante, deep eyes, then he'll fix up the medicine there at home.” Maria José and João, parents of Cristiele, 4 years old e Maria Eduarda, 8 months.
Fright quebrante: "That's when there's a sharp sound, or the child falls." -- Juanilde and Adicley,parents of Cassia, 3 meses. "When people sare a child by making loits of noise." - Cláudia e Lorismar, parents of Thaivany, 4 years old and Thalison, 1 year old..
Fallen wind quebrante. "Fallen wind is when someone picks up a child and puts him upside down, or when you carry him over your head." Maria José and José, parents of Sebastião, 3 years old.
Evil Eye Quebrante. "It happens when people look at the child with a desirous or envious eye." ” Leidiana and Amisterdan, parents of Danley, 11 months.
In conversations with parents, we learned that the symptoms of many types of quebrante are fever, vomiting, diarrhea, and weakness. These symptoms can also poiint to other illnesses. None the less, they are generally considered part of the "prayer illnesses"
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Foto: Inara Nascimento Tavares
Hunger quebrante: "It happens when a hungry person looks at the child, wants to make the child happy." - Eliene and Fransciso, parents of Fransciso, 1 year old.
“First the rezador, then a doctor, and in the worse case, tea.” Nariane and Fábio, parents of Wilison, 2 years and 8 months.
“First I go to my dad. Then maybe to the doctor, then to the rezador, who will know what to do.” Célia and Edcharles, parents of Natally, 3 years and 5 months.
“First I try teas, then the rezador, and if that doesn't work, I go to the doctor.” Carmem and Ilton, parents of Ricardo, 10 years old, Luan, 8 years and Iego, 4 years old.
“I go to the rezador and make teas. I never take them to the doctor.” Socorro and Charle, parents of Francisco, 3 years old.
We made a preliminary map of rezadors in Atalaia and finally managed to speak with five of them; in their turn, they told us of another 15. All are men and women rom 50-90 years old, and some are in constant
Have you ever gone to a professional doctor?
Stillfrom thefilm "ORezador"
movement between town and outlying villages. We tried to invite all of them to a focal group, but we did not succeed. The rezadors with whom we spoke told us that praying is a gift, and as such, they have to provide their services for free. They share home remedies and herbal cures with each other, but some also keep tight tabs on certain cures passed down from generation to generation in the same families. Because the skill is a gift, all of the rezadors we interviewed agreed that they could not transmit their knowledge to other people. They could pass on ideas about teas and herbs, but not how to intervene through prayer. In many cases, families only decide to go to the doctor after the rezador has referred them to the formal medical system. Because of these referrals, almost all of the people we interviewed had seen a university educated doctor at least once, when the rezador was not able to cure the problem. People did, however, complain of these doctors in a way they did not complain of the rezadores, and they mentioned that often when they went to a health post or hospital, there was no no one there because the municipality had failed yes to contract staff. A small number of mothers and fathers interviewed reported that they did not take their children to
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rezadors because it was prohibited by their religion: these were largely members of evangelical or messianic sects. In all of these cases, however, the religious groups had replaced traditional curative prayer with a form that fit inside the religious precepts. “We are evangelicals, so when it is a prayer illness, we resolve it at home.” Rosalina and Alessandro, parents of Izabele, 4 years old; Estefany, 3 years old; Rebeca, 2 years old, and Thaeme, 3 months. “I don't believe in the rezador, but in the Bible. I pray on the Bible to cure my children.” Maria Cristina and Eurismir, parents of Helida, 8 years old and Marlon, 4 months.
The Peruvian town of Islandia floats on the Rio Solimões, and has a border with Benjamin Constant. To get there from Atalaia do Norte takes an hour: first to Benjamin Constant by road, generally by shared taxi (there is no bus) and then to Islandia by boat. By the cheapest form of transit, the trip costs from R$40-50.
“I look for a doctor, and if that doesn't work I go to the church for the prayer group. We also use home remedies. I don't believe in rezadors because I'm evangelical.” Antonia and Berlamino, parents of Ana Sabrina, 1 year and 4 months..
“I'm the doctor for my kids. We are israelites, and we know the prayers for when someone is sick." Izaias and Anita, parents of Bruno, 3 years old and Ester, 1 year old.
Because of the failed formal medical system in Atalaia, many people also seek medical care in nearby cities like Benjamin Constant and Tabatinga, or across the border in Leticia or Islandia. To go to other Brazilian hospitals, parents need a formal referral from the hospital in Atalaia. Parents say that when all else fails, the doctors in Leticia are the best option, because they are very skilled, if private and expensive. Some parents even told us that Brazilian doctors themselves suggested that the parents seek out care in Leticia because of the precarious situation of public health in Atalaia.
People often go to Islandia, the floating town over the Peruvian border in order to visit a cheap dentist and to buy medicine. People do not seem to evaluate whether the medicine is safe or if the service is good. It is simply cheaper. 5. How do you know if your child is healthy? Who says that he is well or not? What do you do to keep your The Colombia city of Leticia has a child healthy? border with Tabatinga. It takes two hours to get there: Atalaia to Benjamin People by taxi, then a fast boat to Tabatinga and define a well a moto-taxi across the border into child with many Colombia. Round-trip runs from R$66different terms: 120 per person depending on the speed he or she is of the trip. happy, plays, talks, eats well, doesn't cry. The lack of these signals is what begins to worry parents, at which point they often first ask their own parents if they think there is a problem. Recognizing quebrante is clearly a task delegated to older and wiser heads. In order to maintain good health, the majority of parents talked about food. “I keep them clean and don't let them put dirty things from the floor in their mouths.” Mariluz and Mauro, parents of Maiara, 4 years old and Willian, 1 year old..
“O give him baths, make sure he eats well, and don't let him get dirty.” Ariane eand Josirley, parents of Anderson, 3 months.
“I clean the house, I watch their food. I always wash the vegetables and I watch out for rats, because there is no sewer here.” Nilo and Orfita, parents of Cristal, 5 years old and Sara, 2 years old.
“I keep him clean and always brush his teeth.” Carmem and Ilton, parets of Iego, 4 years old.
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“I watch out for food, and I always make sure they have shoes and are clean.” Oziane and Júlio, parents of Ana, 4 years old and Julia, 3 years old.
When asked about food, parents generally divide it into two categories, things that are healthy and those that are "junk food" or very fatty.
“There are some foods we don't give them, like fatty food and slimy food.” Francisca and Antonio, parents of Catarina, 3 years old; Maria, 1 year old e Gabriel, 2 two months old. “He eats fish and no meat. Fish is good for you. He also drinks milk.” Ivoneande Jânio,parents of Jânio, 2 year old.
6. What illnesses has your child had? When?
Bairo daPonte
“I give her good food with lots of vegetables, and I have a little garden with chives, onions, tomatoes, and some other things to put in her food.” Glória and Rafael, parents of Raquel, 4 years old.
“I alwasy look out for food, and I don't let lunchtime pass by!” Maria and Francisco, parents of Rosiane, 3 years old. “I give him lots of mineral water and passion fruit juice, but only what I make at home. In the street, you have no idea what you'll get.” Vânia and Jonas, parents of Jonas, 10 months old. “I don't let them eat junk like candy and chips. I only give good food to my children.” Maria Aparecida and Raimundo, parents of Ana, 4 years old and Carlos, 5 years old.
“I don't let her eat junk, because lots of candy isn't good for her."” Kena and Jacil, parents of
The most common illnesses reported were chickepox, flu, and quebrante (generally meaning Number of children who have suffered from each disease diarrhea). A majority of the Quebrante families reported that thir children Malaria had only suffered Vomit from prayer diseases. Fever, Colic colic, vomit, and diarrhea are seen as Fever common in children. We heard Chickenpox several reports of malaria, including several children Flu younger than one year who had suffered from the illness more than once, and of pneumonia. We did not hear of any cases of hepatitis, even though many of the families reported that there were adults in the family who had died of or were recovering from the disease. Foto: Inara Nascimento Tavares
“For him to eat well, we have to prepare his food differently from ours. He can't east pasta with sauce, so we pull his out before we put on our sauce. He always takes a vitamin C pill with his morning bath, and once a month I take him to the health post to weigh him.” Charles and Danicélia, parents of Charles Luan, 1 year and 7 months.
Gabriele, 4 year old.
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Sewer and water
7. Where do you get water to drink? Do you prepare it in any way? Does the health agent distribute anything to purify water? Has water caused any illnesses in your child?
“I get water from the faucet and sometimes from the rain. The water from the faucet is treated.” Zilanda and Junior, parents of Bruno, 3 years old. “I get water from the municipal system. I just filter out the dirt because it is treated.” Audilene and Carlos, parents of Mebí, 3 years old.
Where do you get water to River + Hypocloride Rain
Faucet Water and sewage are serious problems in Atalaia, Benjamin Constant, and Tabatinga. The Ministério Público has already entered into a lawsuit to force the municipalities to implement projects for drinking water, and the state government has plans for several water treatment plants in the “The municipal system. I Upper Solimões. Nonetheless, we see little impact of these actions on the just filter the mud.” ground in poor neighborhoods of Atalaia. Erondina and Manuel, parents of Lara and Clarissa, 2 years old. The project for regional development “I get water from the rain. I filter it and then put in hypocloride.” Elizângela and "In a civil lawsuit, the Ministério Público has shown that of Amazonas, in Jonas, parents of Vitória, 1 year and 10 months. the Federal Government budgeted 58.3 million reais for sewage colaboration with the and water treatment in indigenous communities, but only 44 Though some families put hypocloride (sometimes thousand was properly spent. In a judgement from the bench, World Bank, proposes the federal judge Marília Gurgel, in Tabatinga, gave the provided by the health agent) into the water, most families various actions in government 30 days to begin emergency implementation of a believe that the municipal water system is treated and healthy, if public investment and plan to bring potable water to indigenous communities in the muddy. public works for Upper Solimões and Javari Rivers. In the case of failure to do Some families also remove the mud from the water so, the fine will be set at 5,000 reais a day." (Ministério Público water and sewage. 2013) through "stones" provided free at the water treatment plant. The state government These "stone" are pellets of aluminum cloride used to precipitate brags that "In Atalaia the dirt in the solution and adjust the pH of the water. It clears mud from do Norte, the new water system is 100% complete, jumping from 4700 to the water but does not purify it. 21,400 km of water piping. It advanced from a 200,000 liter capacity to an 800,000 capacity." (Amazonas, 2013). The press release does not mention "I use the municipal water system. I put in the stones, since the water is already treated." ” that the water provided through these pipes is not potable. Rosenildo, father of Julio, 4 years old. Neighborhoods close to the center of the city now get water piped “I get water from the faucet, put in the stones, and cover it well. ” Silvana and Raimundo, parents directly into their homes, some every day, some on even or odd days. of Luis, 9 years old; Maria Saldanha, 4 years old; Ainara, 2 years old e Juliana, 11 months. Families keep large tanks to store water for days when it is not provided.
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“I get water from the faucet, but I put in the stones and solium hypocloride.” Nataly and Hescar, parents of Michele, 1 year and three months.
“I get the water from the rain. I put in the stones and then hypocloride.” Abigail and Eliseu, parents of Jorge Daniel, 3 years old e Hellen, 4 months.
The project for regional development of Amazonas, in colaboration with the World Bank, proposes various actions in public investment and public works for water and sewage. The state government brags that "In Atalaia do Norte, the new water system is 100% complete, jumping from 4700 to 21,400 km of water piping. It advanced from a 200,000 liter capacity to an 800,000 capacity." (Amazonas, 2013). The press release does not mention that the water provided through these pipes is not potable.
People believe the water to be treated, but it is not. It merely comes in pipes to their homes. Some families had used hypocloride at the recommendation of the health agents, but because it lseave a bad taste, many have decided just to use the stones to make the water clear. Few people believe that water causes illness in their children. Many parents see the connection only when they are told by a doctor.
“The water in the faucet is dirty, and we had diarrhea all the time. Then the doctor explained it.” Ruth and Charlei, parents of Rafael, 14 years od, Jéssica, 10 years old, Charlene, 8 year old, Ana Flávia, 7 years old, Ana Carla, 3 year old, Natalina, 1 1 year old and Bruna, 1 month. “They had diarrhea. The doctor told us it was because we didn't put hypocloride in the water.” Arlete and Raimundo, parents of Victor, 4 years old and Vitoria, 2 years old.
“I used to give them water from the municipal system, but then they got diarrhea and the doctor said it was from the water, so now I just get water from the rain.” Maria and Francisco, parents of Rosiane, 3 years old
8. Where is the bathroom? We interviewed 150 families. Of these, only 35 (23%) had a pit toilet at their house. Our question generally confused people, because the answer was obvious: they used the area behind their house to defecate and urinate. “Behind the house there's a little wood hut to take a bath and other necessities.” Maria José and Dyoyr, parents of Daiane, 2 years old.
“There's no bathroom, hut we ask to use the neighbor's.” Mariluz and Mauro, parents of Maiara, 4 years old and Willian, 1 year old. “The bathroom I have is just to bathe. For those necessities I go to my neighbors.” Silvana and Raimundo, parents of Luis, 9 years old, Maria, 4 years old, Ainara, 2 years old, and Juliana, 11 months. “I go into the jungle for those activities. To bathe it's that hut behind the house.” Eliza and Raimundo parents of Raimundo, 4 years old and Augusto, 3 months old.
Behind the houses, families generally build an outhouse where there is a faucet and a number of tanks to store water. There will be a washboard for laundry and a sink for dishes; this is also the "bath house." On hot days, children will spend the whole day in this space, immersed in buckets of water. At Bathrooms (inner circle: IBGE night, people urinate and defecate here, Outer: This baseline) and then in the morning the areas is cleaned and the waste dumped in the Pit Toilet river. Women use criolina for cleaning, because they believe it kills bacteria and worms. No Even when homes are more Bathroom solidly built of concrete or brick, people continue to use this kind of an outhouse. The bathroom will be the last space to be considered and built when a new home is
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constructed. Homes beside the river or on stilts above it are also worrisome. Defecation and urination happen at the same place that people gather water for drinking and washing. Most people understand that this is not entirely healthy, but they continue to do it anyway.
9. Can you explain what the child eats, and how that changes from birth to four years? Is there a time of when food is lacking? What do you do to watch after the child at this time? “She only stopped nursing at 3, but since she was six months old she has eaten banana mush. Now she eats what everyone does, fish stew… we just don't give her sausage. We always have enough food, and if not, well, we can get by with egg soup." Luzia and Manoel, parents of Priscila, 4 years old. “He stopped nursing at 2, but since he was six months old he eats baby food. Soup, broth, fish,
“She'll eat anything you give her, but we try to give her lots of fruit, banana, pupunha, things we have around here. She's eaten like that since she was six months old, banana mush and other fruits that kids like.” Maria Aparecida and Raimundo, parents of Ana, 4 years old.
“He never nursed, only drank milk. Now he eats whatever we have, 'cause there is no money to buy what he wants. Sometime food from the market is lacking, but never fish. We always have fish broth.” Socorro and Charles, parents of Francisco, 3 year old.
Outhouse andclothesline
Food
Foto: Inara Nascimento Tavares
beans… but I never give him the grains, just the broth of the beans.” Francisca and Paulo, parents of Natanael, 3 years old.
“He still nurses, but he began to eat food when he was six months old: bean broth, crushed potato, chickenm, rice, pasta.” Adais and Josué, parents of Alex, one year old.
Many parents told us that the child would "eat whatever" and "is not picky"; this was a point of pride. People did not understand the word "diet", at least not in the idea of a "balanced diet." "His diet? It's whatever we have," said Socorro, the mother of Franscisco. Though we did not ask about the season when each fruit is ripe, many parents mentioned this fact. One fruit will be edible one month,
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another the next. When we were in the field, people were harvesting açaí, and people ate almost only that. Some parents were concerned that "he just drinks açaí all day long and won't have anything else!" Some families in town understood the lack of food to mean the lack of money. At the end of the month, the money from the Bolsa Família would run out, and so would the ability to buy food at the store. Most families run up debts in small markets and then pay them at the first of the month. In markets, mothers generally buy canned goods, food that is easy to prepare, and pickled vegetables and meats. Many children prefer store food What does your child eat?
to food from the countryside, especially ramen noodles. “He east porridge and eats ramen. That's all he wants to eat.” Izaias and Anita, parents of Buno, 3 years old and Ester, 1 year old. “She still nurses, but since six months she eats banana porridge and ramen. Today she wants to eat ramen and won't eat other things.” Natavidade and Shubert, parents of Luiza, 2 years old.
Banana Mush Ramen Fish broth Sausage Banana Bean broth Pupunha Beans Rice Pasta Potato Chicken Açaí Spam Eggs Canned fruit Vegetables Cream of Wheat Hot dogs Fried plantains Ground beef Farinha Láctea Farofa Chips Pop
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Nursing Stopped at 6 months Stopped after 18 months
“When she was a year and a half old she began to eat ramen, and that's what she most likes now.” Dácia and Antoniel, parents of Darieli, 2 years old.
“If we don't have anything else, I give them ramen.” Maria and João, parents of Victor, 3 years old; Vinícius, 2 years old and Vanessa, 1 year old.
When families go into debt at the end of the month, some markets demand the Bolsa Família card as collateral. They will then charge usury on this loan; we often hear of a $50 debt becoming $80 or $100 when it was paid only a week later. People seem to understand that this is illegal, but we heard that many indigenous people still fell victim to the scheme.
Medicine
10. Has your child ever gone to the doctor? To another health professional? How many times in the last two years? Has a doctor even come to your home? What about a dentist? We were surprised to hear that of all the families we interviewed, 135 (90%) had received a doctor's visit at home. These visits always came at moments of serious health problems, when it would be necessary to take the patient to the hospital. However, many of these visits were not directed toward the children. The visits of health teams and health agents were not regular. Most families we interviewed criticized the health agents as untrained and nosey; they got in people's business where they shouldn't and gossiped all the time. One of their most important jobs, to mediate relations with the hospital or health post, they never did. Many families told us they had fought with the health agent and would not even speak with them. In spite of these tensions, it appears that the malaria tests implemented by the health agents and the health inspectors work, leading to quick diagnosis and treatment. Even when the families hate them they do accept visits for malaria tests. Many families go often to the hospital and the health posts. Some families have gone as many as 20 times in the last two years. Given that preventative medicine is not a priority in Atalaia, we can assume that these visits to the hospital correspond with serious illness. Few people have taken their children to a dentist, and those who have only did so in the case of an emergency. Many went to Islandia in Peru where treatment is cheaper. Some parents report than in the past the schools did dental education, but now they have stopped doing so.
11. Who looked after you where you were pregnant? Did you lose any children before they were born? What are the first things you should do to care for a newborn baby? Did you have and medical help after the child was born?
How many times has your child gone to the doctor in the last two years? At least Once
Five times 20 or more times
Conversations about pregnancy and childbirth generated hours and hours of conversations. Mothers remembered their pregnancies with laughter and regret, talking of morning sickness, cravings for certain foods, the way that they would prepare the home and clothes for the new baby‌ these questions provided many of the best moments during the interviews. The loss of a child, whether in pregnancy or after birth, was clearly a taboo. Mothers seemed to associated the idea of "loss" with some failure on their part, or on the desire not to have a child. This lack of wanting the child was seen as a sin, and often the cause of losing or failing to conceive a child. In spite of this taboo, 40 mothers did tell us that they had suffered a miscarriage. Many told us they felt guilty, while others admitted that it had been a relief, in spite of the fact they knew they would be judged by friends and neighbors. At least five mothers who suffered miscarriages continue to
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S達oPedro doNorte
Foto: Inara Nascimento Tavares
give tribute to the babies on the Day of the Dead, calling them "little angels," making a tomb, and putting flowers there. In many interviews, this series of questions inspired the interviewees to ask me why I did not have children. "At your age, lots of women have two, three kids," I heard from many. When I explained that I planned to have children only at 30 or 40 years of age, once I was professionally and financially stable, they asked how I had been able to do this. At this point, they became the interviewers, asking about contraception. I soon learned that few women in Atalaia knew much about birth control. One of the few health professionals willing to talk with the research team was the birth control nurse at the health post. She told me that many women sought her out because they did not want to have any more children, but that they said they could only use contraceptives if their husbands didn't know. The same nurse told us that many women would come for a first prenatal visit but then would never return. "Sometimes we hear through the grapevine that a woman miscarried, or we hear it though a health agent, but I never heard of a woman coming to the health post afterward." 35 of the mothers interviewed had given birth through C-Section,
but vaginal birth was much more common. Many mothers told us that when they went to the hospital, no doctor was present, so they had only the support of nurses. Many women were terrified by the chance that a doctor would not be present when the time to deliver came. Many mothers told us that in addition to or in place of the pre-natal care, they went to rezadors. "Quebrante can go through the mother to the baby, so you have to be careful," we heard several times. When asked about the first precaution for a newborn, we mostly heard stories about the belly button and umbilical stump. Mothers and fathers were very careful to avoid inflammation and to make sure it fell off at the proper time. The body of the baby was maintained, in large part, through the umbilical cord, Prenatal Caregiver even after birth. Other mothers told us how Father, important it was to be careful Profesional, 21% of the gaze in the first days 32% after a child'd birth. Babies are very vulnerable to the Grandmother, evil eye, and can get quebrante None 6% 21% from many desiring eyes. They suggest that no baby be seen in the first week of its life. After this date, it will be protected with a special leaf bath and can be seen by the family. Few mothers had postnatal care, and only when the birth was complicated or dangerous. Many mothers do take their children to the doctor for neo-natal care, but seldom do they themselves seek out a doctor
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Sister 3%
Professonal Post-Natal Care? Doctor, 25%
Health Agent, 2% None, 68%
or accept advice to take vitamins or medicines. 12. Is your baby up to date on his vaccines? Did you get a certificate of live birth and birth certificate? Have you registered the baby with the government in any other way? When a child is born in the hospital, it is quite easy to get a live birth certificate. Parents then take this certificate to the nootary public to get a birth certificate. Unfortunately, the notary does not always have the proper offical paper on which to emit the certificate, and we heard of delays of up to two months in getting the certificate. Indigenous families get the RANI (Indigenous Register) through the FUNAI. This document can then be used to get a birth certificate. It is common for indigenous people to get a birth certificate only when they apply for the Bolsa Família. Most children have their vaccines up to date. 13. Do you think that you and your children get good medical attention? What would good medical attention be? "My wife had terrible care when she gave birth. The girl was almost born in the corredor because no one paid attention to her." Manuel, father of Julia, 4 years old. “It might be better if there were doctors in the hospital, or a pediatritian for kids, someone who knew women's health." Francisca and Alex, parents of Alex, 3 years old and Alexandre, 2 years old. “It would be better if the ambulace came when we called, instead of two hours later.” Auzira and Raimundo, parents of Ruiam, 2 years old. “It might work if everyone were treated the same, without distinguishing race and color. I wish there were doctors and medicine.” Elizete and Márcio, parents of Marcinho, 4 years old.
“The care was terrible. No doctors, just nurses, and they were so rude. Maybe if there were a doctor, the nurses would treat people with more respect.” Luzia and Manoel, parents of Priscila, 4 years old.
Most people agreed on what would be good health care: to be seen quickly, to be treated with respect, and to find a cure. Almost everyone agreed, as well, that all of these elements were lacking. Preventative health care is not common in Atalaia. People go to the doctor when they are sick and when nothing else works; the last resort is to go to the hospital. They arrive in awful conditions at the hospital, and the hospital -- without infrastructure, doctors, medicine -- refers them to the center in Benjamin Constant, Tabatinga, or Manaus. Most families do not want to go, but the medical professionals force them. "If they send someone to Benjamin or Tabatinga, maybe they come back. But if they send them to Manaus, they are dead for sure." IV fluid inspires a superstitious fear in many people: they say that it is fatal. Many people whose family members have died in the hospital blame it on the IV fluid, and the rezadors confirm this belief. Many people, upon seeing that they will be put on an IV, will refuse treatment. We suggest a hypothesis to explain this fear: when people go to the hospital, they are already in very bad shape. In general, the hospital does not have the staff or the supplies to give effective treatment. The sickest of people are given IV fluid, and have a much greater chance to die. The IV is then blamed as the cause of death. Though almost everyone criticized the health system as a whole, most pointed to one doctor or nurse who actually did his or her job. They keep track of the schedule of the professionals at the hospital to make sure that the competent figure is on staff when they go to seek help. We also saw that the hierarchies in the hospital are important. Many people said that when doctors are around, the nurses are less arrogant and more helpful. People also generally preferred treatment with senior staff: "I want to be seen by the one who commands, not the one who is commanded." We wonder if these hierarchies do not also have something to do with the contempt many people feel for the health agents, clearly the low men on the totem pole.
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Bolsa FamĂlia
We heard of three common benefits: Bolsa FamĂlia,, young citizen (given to teens in state high schools), and pensions. 130 families (87%) get the Bolsa FamĂlia, and most of them get the maximum amount (306 reais). In some homes, we saw three mothers and families, and when the Bolsas of all three are collected, it comes to a decent sum of almost $1000. Technically, there should be only one Bolsa per household, but mothers have found a way around the problem. When asked for their address at the Bolsa office, one mother will say, "123 Bridge Street, Apartment A", the second will say "123 Bridge Street, Apartment B", and so on. In the end, the rule has little effect. Families generally use the Bolsa to buy food, pay rent and electricity, and sometimes to buy refrigerators on the installment plan; some stores in town accept the card as proof of income. Though illegal, some people use the card as a down payment for large purchases. The store holds onto the card and gets the benefit each month, until the debt (and interest) are paid off. The practice is, as one might imagine, usury. Many families say they know they are being taken advantage of, but they don't denounce the problem because it is the only way they can make large purchases.
s w e i v r e In t
Interviews with health professionals
The lack of health administrators made interviews with health professionals very difficult, but we did manage to interview some staff members, as long as we promised to keep their names anonymous. The nurse who works on birth control issues at the health post has worked there for three years.; she teaches about birth control and gives condoms and pills, as well as helping with prenatal care. She believes that he work would be better if she had the materials she needed to do it.
In April and June, the nurse was working with 85 pregnant women, but 12 of these were Peruvian and did not have a SUS card. She cares for these women, but cannot document them on her stats. Of those for whom she keep paperwork. 58 of them (79%) are younger than 25, and 27 (37%) are younger than 20. Of this young subset, none had ever used a contraceptive. Mothers older than 25 were all in at least their second or third pregnancy. This nurse also explained that the municipality is divided into 20 subregions, and each has a health agent. All of these agents were fired when the new mayor took power, and they have not yet been replaced. It then takes time for these agents to get to know the families in their region. She does not know when the agents will be in place, nor when they will meet with the rest of the health team. There are also 14 health agents who work in the villages along the river, and, due to political pressure, some of these agents were not fired and continue to work. The conditions for health agents are precarious. There is no money for boats or gasoline and not enough medicine to take to the villages. There is no infrastructure in the communities, and the agent often sees patients, gives medicine, and cares for people in his home. The agent serves as doctor and nurse in these communities. A second nurse, the head of the Family Health Program, told us that the Hospital is in desperate need of reform. There are four rooms, an area for treatment, a reception area, and a bathroom, and there is never enough space. The municipality does not contract enough staff, and there are always delays in contracting.
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i r a m a n a Os K
The local Health Council asked us to meet with a group of Kanamari peindiansople who had come to Atalaia; FUNAI and the Council suggested that we speak with them about issues of children't health, due in part to a recent lawsuit by the Ministério Público demanding that the "FUNAI and the DSEI study and report on the current health conditions of Kanamari children, especially after the deaths of so many by malnutrition in recent years." We created a focus group for the Kanamari, using the same structure we had used in the rest of the research, and adding other issues that they deemed important; we then passed on the results of this conversation to the government agencies responsible. The Health Council, two of whose members are Marubo indians, then worked the Kanamari leaders to organize a meeting at the end of May. The date was chosen because of the large number of families who come at that time to get the Bolsa Família. We met with 25 members of 3 families at the offices of the FUNAI; we met representatives of the Massapê, Bananeira, Remansinho and Estirão do Cumaru villages, all of them on the Itaquaí River. Very few Kanamari speak Portuguese, so we were accompanied by two translators, José Ninha Kanamari, head of the Itaquaí post for the FUNAI and Valdeir Kanamari, a young Kanamari now studying in Atalaia. Though I coordinated the meeting several other UFAM professors also participated: Tattyana Pantoja (biology), Gabriel Zanatta (forestry) and Thelma Freitas (agronomy). We brought together these experts thinking that the issue of malnutrition would be best addressed by people who understood farming, fishing, and hunting. We began the meeting in two smaller groups, talking about food and planting. We were surprised to hear that there was actually an excess of cultivated food, fish, and game. In the rainy reason, hunting is more difficult, but in the summer, there is plenty of fruit, manioc, and game. The Kanamari divide illness only into two categories: vomit and diarrhea. These symptoms do not have causes. Children die of these two problems, and the Kanamari understand that vomit is contagious. "If it is Kanamari vomit or diarrhea, the Kanamari know how to cure it, but if it is a nawa illness, we need nawa medicine", Valdeir Kanamari told us, but we heard the same phrase in many mouths. White illness needs white medicine. "The problem is that all illness is now nawa illness," Valmeir continued. "Once upon a time we had the cure, but now we don't." Pregnant women must follow many food proscriptions in order to keep the fetus safe. They may not eat many kinds of fish and game, which are supposed to promote miscarriage. The Kanamari believe that their traditional illnesses are passed on from animals, and as such they cannot eat the flesh of those animals. Mothers told us that when babies are in the "breast time" they are most vulnerable to illness, but once they are in "teeth time" and can eat solid food, they are less likely to die. When Kanamari children get sick, their parents first look for herbal medicine in the jungle. If this doesn't work, they go to a shaman. The shaman will drink a tea that allows him to see the origin of the sickness. Since Kanamari illness is always caused by animals, if the shaman does not see an animal in his trance, he knows that the illness is a nawa illness and must be cured by the nawa. Though the dialogue was made more difficult by translation, it certainly gave us food for thought. The Kanamari are traditionally nomadic, and as they come to town, water and sewage problems may be particularly troubling to them. When the notes from the dialogue are complete, we will submit them to Kanamari leaders, the FUNAI, and the Ministério Público.
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s n o i s u l c Con
Conclusions
This study provides detailed descriptions of childcare in Atalaia do Norte. Here in this conclusion, I would like to step back and emphasize what I believe to be the most important issues: water, the rezadors, and indigenous health. The conditions of water in Atalaia are terrible. The water system brings unhealthy water directly into people's homes, and they believe that it is potable. The excessive use of the stones certainly has negative health effects. Few people understand the connection between contaminated water and diarrhea, vomit, and fever. We believe that the rezadors play an important role in the health ecology of Atalaia, but they could do even more to teach families about health and hygiene, and to refer children to the formal health system. People trust the rezadors and see them as an essential part of the curing process, so their support could be an important step in bringing the people and the health system together. We also saw that many people use the rezador when the formal health system is out of medicine or when no professional staff are available. Mapping the rezadors and putting them in touch with the health agents could be a useful measure to bring these actors together. The rezador could teach the health agent how to relate to the community, and the health agent could serve as a mediator to the formal system. Finally, through many people say that indigenous health care takes traditional medical practices into account, we saw no evidence of this. Health professionals are not trained to see or understand indigenous health practices, and they generally have contempt for them. As such, indigenous patients are often the victims of symbolic violence and misunderstanding. indigenous people then fail to trust the professionals they need to resolve the new illnesses that they face and which their own medicine has no way to treat. Indigenous people constantly complain of the contempt they see in health professionals. Various proposals at the end of this book propose to deal with this problem, but we want to add the fact that in Atalaia, the excellent anthropology department at the local campus of the UFAM would be an important resource for training doctors to respect and understand indigenous medical traditions.
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7 r e t p a hC
Analyzing the data: Toward a Baseline for future evaluations
T
Rita de Cรกcia Oenning da Silva and Kurt Shaw
he research that gave birth to this book had two clear purposes: to understand the dynamics of how parents and institutions care for small children in rural areas of Amazonas State, and to construct a baseline to evaluate future public and NGO policies. In this chapter, we want to cross the data streams from three rivers -- the Negro (Santa Isabel), Javari (Atalaia), and the Purus (Lรกbrea) -- with the official data provided by the government, in order to create this baseline. Before we began this research, both we researchers and our funder had imagined that infant mortality and morbidity would be the two key elements in this baseline. Unfortunately, we learned over the course of this research that these statistics, essential in constructing public policy for children anywhere in the world, are full of errors, confusions, and even bald lies in rural Amazonas. The first part of the chapter argues, surprisingly, that infant mortality cannot be the baseline for future evaluations. After examining the problems of mortality as a metric, the second part of the chapter looks for other statistics that might serve a similar purpose. The results offer a new path to develop and evaluate actions and public policy in rural Amazonas, with more care and honesty than had previously been possible.
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y t i l a t r o nI fant M
Problems with the data on Infant Mortality
Academics, the state, and aid organizations all use infant mortality as one of the fundamental data to evaluate progress and development in policy around children. For this reason, we were sad to see the numerous problems with this simple datum in the Amazon. We begin with an all-too-representative example: when speaking with health agents in Atalaia do Norte -- people who demanded anonymity before speaking with us, for fear of their lives and jobs -- Inara Nascimento learned that upper level public servants punished health agents for submitting death notices. Paperwork informing the death of Infant Morality data from the UN a child would gain Millenium Goals on Atalaia: Note special punishment. the extreme annual variations Bosses would take the notebooks in which health agents registered mortality and morbidity, as well as weight and nutrition, and would then forge new data. We can see the consequences of this practice in official statistics. According to the data that Atalaia supplies to the SUS -- numbers that will eventually become part of reports on the UN's Millennium Development Goals -- from 2009 to 2010, infant mortality skyrocketed:
from 25.6 per 1000 to 84.6 (Portal Atalaia, 2013). Though we do know that the Kanamari Indians faced serious health problems that year, it is much more probable that the death rate has to do with measuring: in 2010 many health missions came into Atalaia from outside. They counted actual deaths of children, and local bureaucrats could not falsify the data as they had in previous years. We see the same pattern in 2002, when the mortality rate went through the roof, not because of any new problems, but because of the implementation of the new DSEI, with independent doctors on site. (Menegola, 10) When there are no doctors in the Vale do Javari, one cannot sign a death certificate with the cause of death, so it is easier and politically more convenient pretend the death never happened. The doctors in the temporary missions, however, did not fear punishment from local bureaucrats, so in 2002 and 2010, we got a more accurate portrayal of the real situation in Atalaia. Even the number of births -- essential to calculate the denominator in the child mortality statistics -- is doubtful in Atalaia. The birth rate varies from 15 to 31 over the 2000-2005 half decade (DataSUS, Atalaia), a variation far outside of the statistical mean. Ivone Menegola, a doctor and epidemiologist who works in the Yanomami reserves, reflects on this problem in her "Note of the mortality of indigenous children." The variation in the birth rates observed in the last two years doesn't have any one explanation, but we know it is very improbable that a stable population like rural indigenous people will have a dramatic drop in natality in one year. Like in the case of mortality, it is much better to look at institutions: are they absent because of the a change in the outsourcing partner? Was the health team fired or changed? Poorly prepared health teams with little connection to the community and no skill in indigenous languages will have a much harder time finding and registering births and deaths of children, even in indigenous groups with closer contact with national society." (Cons贸rcio 2009, 5)
Health agents in Atalaia do Norte also complained that their bosses would take away the notebooks in which they registered the height and weight of children. We see in the UN Millennium report that the malnutrition rate -- case of a third of infant mortality (UNICEF 2008) -- fell
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from 11.1 to 0.4% in Atalaia over Nutrition data from the UN three years in the early 2000s, and Goals Portal. Note the has since stayed at that low stable unlikely fall from 2001rate. Academic literature is very 2003 clear about the high rates of malnutrition among the Kanamari and other indigenous groups in the Vale do Javari -- a problem caused more by parasites and worms than by lack of food -- so it it much easier to see this datum as the result of political manipulation than as a representation of the facts on the ground. In Santa Isabel, we heard similar stories: data forging, punishment of health agents for reporting death or malnutrition, and document loss. Though no one would go on the record to denounce the crime, it appears that when a new mayor took office in 2013, one of his first acts was to erase all of the statistics on the computers in the hospital. When we look at UN Millennium data from Santa Isabel, we see a drop in malnutrition that almost exactly mirrors the drop (and even year) in Atalaia, and even more radical year to year variations in infant mortality: a climb of 516% between 2005 and 2006, for example. (Portal, Santa Isabel, 2013) In addition to political problems -- what appears to be a conscious and coordinated effort to modify data to look good on the Millennium Goals Reports -- we also see major problems in training and simple geography. When a child dies in a small rural village or isolated home, it is unlikely a doctor will be nearby. In these traditional communities, few people worry about a death certificate before burying a child: mourning is more important that paper. A health agent may or may not register the death -- and since in many municipalities all of the health agents will be replaced with the coming
of a new mayor, there are always long gaps in time when no agents are in the communities. When we consider morbidity, the issue is even worse. If we add together the data from the three municipalities we studied, between 2008 and 2011, 158 children died. Of these death, 68% are classified in the two vaguest categories: "Some problems in the peri-natal period" (Category XIV) and "Symptoms, signals, and abnormal laboratory findings not otherwise categorized." (Category XVIII). This information does carry important insight -- perinatal deaths by definition happen in the first seven days of life, suggesting a need for better prenatal and neonatal care -- but they do not really categorize the cause of children's deaths. As a result of the errors in these data points, we see grave equivocations in the development of public policy: for instance, Atalaia do Norte, perhaps the city with the most serious crisis in the country when it comes to child health, was not even included in the "Infant Mortality Reduction Pact" signed by 12 municipalities in Amazonas. The Federal Health Ministry also gives funding priority to municipalities with serious problems with malnutrition, but neither Atalaia nor Santa Isabel were on the eligibility list for special funding. From the beginning of this research, we distrusted official data on infant mortality. We had expected to find more accurate statistics from our own on-the-ground research, only to find other challenges. The area researchers documented reports of almost no child deaths, especially in recent years. In fact, we often heard rumors of dead children, but it was always "other people's kids" -- a fatal outbreak of dysentery along the Rio Euneuixi in 2010, the Kanamary children in 2010 and 2011, the child of a neighbor who just moved away‌ But no one reported the death of her own son or daughter. We observe an interesting phenomenon in Låbrea, something with parallels in other areas of the Amazon. Several years ago, a team from the New Cartography of the Amazon -- organized by Dra. Thereza Menezes, an
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advisor on this baseline -- was in a meeting on the banks of the Purus River when a family came in with the tragic news that their son had died in the boat on the way to the meeting. For two hours, it was impossible to talk of anything else… but then suddenly, no one spoke of the death again. Afterward, speaking of the child was a complete taboo, prohibited by social pressure. Shame and guilt also play a role in the decision to inform a researcher about the death of a child. We chose the phrase "Did you ever lose a child" as a euphemism to avoid remembering the pain of a child's death, and asked the question at the end of the interveiw, so that the mothers would feel comfortable with the researchers. As a result, we believe that mothers avoided the issue because of shame more than because of sadness. To lose a child appears to be the fault of the mother, something that she would not wish to share with a stranger who has come to her house. A second issue complicates any questions around the death of children in the Amazon: infanticide. In the past, some of the groups that participated in this study -- both indigenous groups and caboclo communities -- have practiced infanticide, and from time to time Brazilian media pay heavy attention to a case of infanticide. Last year, Facebook and other social networks burned with the news of the death of a Maku child (the Maku live in São Gabriel and Santa Isabel on the Rio Negro) and a Zuruahã (in Lábrea). Our research consciously avoided the subject, but when a researcher begins to ask about the death of children, many indigenous and traditional mothers may fear the purpose and results of such questions. Finally, among many Pano tribes (who live in Atalaia and Lábrea), among the Tupi-Guarani (who live almost everywhere in Brazil), and in many traditional communities, talking of the dead is not simple or objective. Speaking the name of the dead may bring back his "double," spirit, or ghost. It may also be considered an offense to the memory of the dead, an act that keeps the spirt from moving along its path to the beyond. For each ethnic group, these beliefs are different, but we feel confident that these cultural taboos made out research much harder.
Thanks to some careful epidemiological studies in the literature (Santos and Coimbra 2003, Consórcio 2009), we have ralatively good data on infant mortality on a small scale over a limited time. These studies indcate that the years with the worst numbers (98.8 per 1000 in Santa Isabel in 2006, 84.6 in Atalaia in 2010) come closest to the real statistics. Nevertheless, these numbers then drop to the unbelievable 13 or 19 in Santa Isabel in 1999 or 2005. With this unlikely variation in official data and our own incapacity to register clear statistics, we can say that mortality and morbidity are not trustworthy statistics upon which to base future evaluations.
e s a B e d a h n i AL
Building the baseline
Without good data on infant mortality -- and with health records systems that have been compromised by political problems and cultural taboos, problems what will not be easily resolved -- we must find other metrics to offer useful and accurate evaluations of future projects and policies for small children. Here we propose four areas of analysis, themes upon which our study and official numbers can give reliable and good statistics: Pregnancy and childbirth, the illness chart, the therapeutic itinerary, and water and sewage.
Childbirth
Though we cannot trust official data nor our own study to count the infant mortality rate, we do have firm and trustworthy statistics on issues that are closely linked to child mortality: miscarriage rates, perinatal death, and the percentage of women who have pre- and post-natal care. Our study also provides excellent subjective information on the way that pregnant women and new mothers perceive the health care system, which can help future studies understand changes in attention to these issues. Let's look at each of
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Relation between miscarriage and infant mortality rates (Woods, 2006)
these categories individually. There is a strong correlation between miscarriage and infant mortality (Woods, 2006), especially when the miscarriage happens in the last trimester of the pregnancy. The relationship here is not causative, but both problems can be understood as results
of the same complex of issues: poor maternal Percentage of health, malnutrition, and the lack of prenatal care. Our research documents miscarriages child deaths in the perinatal phase well in all three communities, with similar and convincing results: 20% of mothers in Santa Isabel suffered a miscarriage, compared to 37% in Lábrea and 27% in Atalaia do Norte. When compared with WHO charts, these number fall well within the expected range. There are some problems with data collection on miscarriage rates in our research: different cultures define miscarriage in different ways and have different levels of comfort to talk about the issue: we believe that these cultural differences play some role in the difference in rates between Santa Isabel and Sta. Isabel Lábrea Atalaia
Percent of mothers who have miscarried
Lábrea. In Atalaia do Norte, answers to the questionnaire make it clear that some respondents confused miscarriage and abortion: the same word describes both events in Portuguese, and since abortion is illegal, women are clearly less comfortable talking about it. Nonetheless, we believe that the statistic on miscarriage is an important one, especially when examined together with the stats we address in the following paragraphs. The second valid number for developing a baseline on child and maternal Sta. Isabel Lábrea Atalaia health is the perinatal morbidity rate. As we noted, this statistic is not actually very useful for thinking about the cause of death, because it does not actually list the illness or problem that killed the child. However, the number does show Percentage of clearly that these babies died in the first women with no pre seven days of their lives. In Lábrea and or post natal care Santa Isabel, more than half of children who die before their first birthday actually died in their first week of life (57% and 52%, respectively. In Atalaia, where we have much more reason to distrust the numbers, the number is 27%). This is an extremely high percentage, higher than in many parts of south and southwest Asia where perinatal death has become a theme of national concern. (Lawn 2005, Jehan 2009). Reducing these perinatal deaths would certainly reduce overall infant Sta. Isabel Lábrea Atalaia
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mortality. International epidemiological studies have shown that Percent of each type of illness, by community that "Globally, the main direct causes of neonatal death are estimated to be preterm birth (28%), severe infections (26%), and e o Nort asphyxia (23%)." (Lawn, 2005), and all of these problems can be d a ia addressed, if not completely solved, with good prenatal care and l a a re good attention in the maternity ward. We know that this datum At b Lรก is limited and does not include information on perinatal deaths in Pneumonia Diarrhea rural areas where doctors are not present, but a reduction in the Flu Vomit l Parasites number of perinatal deaths can only be a good sign. e b Ear ache a Is Fever a t In this context, we should note the extremely poor pren Asthma Sa Malaria and post-natal services in the three municipalities. In Santa Vento Caido Alergies Lack of Air Isabel, 42% of women did not receive pre-natal care, and 63% Hepatitis B Chickenpox did not get post-natal. In Lรกbrea, the numbers are worse: 47% Colic Quebrante Eye ache without pre and 69% without post-natal care. Atalaia was the Toothache Skin illness worst of all, where almost 70% of mothers got neither pre or post natal medical attention. This lacuna in health care is certainly one of the major reasons behind the high levels of perinatal mortality. This complex of data, bringing together information for our research with official government statistics, offers an accurate is a good thing, we must remember that these numbers do not really measure baseline for evaluating the health of mothers and newborns. None of the illness, but the perception of illness. For this reason, changes in these statistics numbers would be sufficient on their own, but together they offer a may be useful to measure the prevention of illness, but they can also show reasonable portrait of neonatal health. social changes in the understanding of illness.
Illness Table
The table of illnesses registered by the research team can also be a useful tool to develop a baseline, but we need to use this information carefully. Modification in the percentage of illness that children suffer can mean many things: though a reduction in the number and severity of illness
The list of illnesses that concerned mothers and fathers of small children shows exactly how complicated the taxonomy of health is in the Amazon. If we look at Santa Isabel and Lรกbrea, for instance, we see very high numbers of children suffering from diarrhea, something we would, sadly, expect in towns with no access to potable water. In Atalaia do Norte, however, a community with even worse water and sewage, not even one person talked about diarrhea. When their children suffer from soft or liquid excrement, mothers in Atalaia don't talk about diarrhea: they talk about quebrante. This isn't just a terminological question: when a child suffers from
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quebrante, mothers will point to other causes of the illness (the evil eye, category of malaria (now only 7% of the total) or in a new category about contact with a hungry adult, etc) and will look for other medical resources in hepatitis. Respiratory illnesses form only a small part of the illness table search of a cure (the rezador instead of a doctor (2%) but they are worth noting for two reasons. or pharmacist). First, the government of Amazonas identifies In the same way, mothers in Atalaia point respiratory illnesses at the second largest cause of Percent of illnesses, categorized in much more to vomit and fever than do their peers infant mortality (Portal Amaz么nia 2007) but also Western terms in other towns. In European medical thought, becausealmost all of these illnesses were reported vomit and fever are symptoms of an underlying in L谩brea, indicating the need for special care in illness, but in Atalaia -- strongly influenced by this region. Pano indigenous thinking -- the symptom is the illness. For the same reason, chickpox takes a high In the small urban areas of the Amazon, and place on the list, while hepatitis and malaria -even in some towns, we can imagine a heath much more serious and endemic problems -- are system in which doctors are always available, but seldom mentioned. Why? Doctors who work in in villages and remote homesteads, primary care rural Amazonas know that malaria and hepatitis will always depend first on the people who live are common, but few parents are able to diagnose there. Treatment for flu, diarrhea, colic, and many the sickness with those words. What Western other childhood illnesses will always be in the medicine sees as a symptom, they see as the illness. hands of mothers, fathers, and grandparents. Chickenpox, unlike these complex illnesses, is easy Doctors and other medical professionals will be a to diagnose because of the characteristic rash. supplement in moments of crisis, emergency or For this reason, we must understand the an unknown problems. illness system of every community, as we For this reason, one of the most worrisome explained in the introduction to this book. Only data in this study is that lack of basic knowledge Respiratory Digestive Flu and Cold Chickpox Malaria afterward can one translate the complex of about endemic illnesses in the region. As we have symptoms and problems -- their health taxonomy analyzed many times in this book, few people -- into terms that Western medicine can understand. understand the intimate connection between contaminated water and After we translate across illness systems, we can see that the health diarrhea. In Atalaia, the illness is even categorized in the folk-medical term problems for small children in the Amazon are quite clear -- and in some of quebrante. Though the treatment recommended by rezadors and blessers cases, easy to resolve. More than half of total illnesses mentioned by -- ritual cleanliness, liquids, breastfeeding, prayer -- can work as a treatment caregivers are digestive, almost always caused by contaminated water. Flu for diarrhea, the local etiology that sees diarrhea as the result of the evil eye and colds take second place (34%) but it is important to understand that part impedes prevention efforts. of this category -- perhaps a large part -- should really be included in the It is also interesting to see how many mothers point to the flu or
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colds as one of the most serious illnesses their children suffer. Any parent can understand this datum: seeing a baby with the mucus and fever of the flu can be terrifying. However, as we mentioned above, doctors who work in the Amazon have seen that these symptoms are often caused by malaria instead of the flu. However, malaria is still a new illness in many parts of the Amazon, especially in remote indigenous communities, and it had not yet been culturally assimilated into folk wisdom. Not knowing the real cause of their children's illness, many parents will seek the wrong kind of treatment. For this reason, though a future analysis of changes in this illness table may be very productive, it mist be done with caution. A reduction in the number of reported cases of flu and an increase in the number of mothers reporting children with malaria would seem, on the face of it, to be a serious problem, caused by a new strain of the disease or the failure of mosquito control efforts. However, it might also be seen as an improvement in health education in the region, allowing parents to make more accurate diagnoses. If a family can distinguish malaria from the flu -- and thus seek out the correct treatment -- this should be seen as a real advance. In the same way, very few mothers and fathers mentioned parasites or intestinal worms, but we should not read this silence in a sanguine fashion. Doctors who work in the region tell us that almost all children in the rural Amazon have intestinal parasites, an infestation that causes diarrhea, weakness, anemia, and malnutrition. This problem, however, is not yet a part of cultural discourse on illness, unless diagnosed by a professional doctor or nurse. For this reason, if more parents mention parasites in future studies, it may actually be a good sign, pointing to a better understanding of the causes and cures of common childhood illnesses. The illness chart is a good resource for a baseline, but only when analyzed in conjunction with quantitative research on how people perceive, understand, and diagnose the illnesses suffered by their children.
TherapeuticItinerary The third useful data complex that emerges from this study is the therapeutic itinerary of families in the rural Amazon. When the child of middle class parents in an urban area gets sick, normally her parents will discuss the problem and perhaps search for symptoms on the internet. Based on their preliminary evaluation, they may take the child to the doctor's office. If the illness is serious, the doctor will almost certainly have the last word on diagnosis and perhaps on treatment. In the interior of the Amazon, the path people take through the medical system is different. In these three municipalities, we saw similar routes of healthcare: when a child is ill, the parents will almost always first consult their own parents. If family counsel can't resolve the problem, the parents will seek out a traditional doctor: these figures may have different names -- shaman, rezador, healer, midwife -- but the function is similar. Using traditonal medical "folk" knowledge like herbs, prayers, hygiene, and rituals, the traditional doctor will try to diagnose and cure the illness. If he or she fails, the traditional doctor may then decide to refer the case to a western doctor or to a specialist in local health. Health agents -- paid by the government and part of the formal health system, but generally close to the people and its traditions -- play a complex and difficult role along this path. When the agent is well connected and well respected in the community, he or she generally shows respect for traditional medicine, asking for the help of women who know medical plants and referring "cultural illnesses" to the local professionals who know how to deal with them. This agent will also orient -- and sometimes accompany -sick rural people as they try to find their way through the confusing bureaucracy of the formal health system. Here we should note that when a sick child finally arrives at the
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Rural Family
Urban Family
hospital or health post, make sure these INTERNET it is not always a doctor women made it to the who sees him or her. hospital. Health agents and Here, the nurses are more health agent's work ASK THE GRANDPARENTS common. We see that inside the system is the majority of families again important. He (75%) across the study helped people get their AGENTE DE SAÚDE SPECIALIST REZADOR have taken their SUS cards, he children to a university introduced them to PEOPLE WHO KNOW educated health doctors, and he helped HERBAL MEDICINES professional, but in them fill out paperwork Santa Isabel, for and deal with GRANDPARENTS instance, only 43% of bureaucracy. Many children were actually women in Lábrea seen by a doctor. complained of awful treatment by doctors, but we seldom heard this Clearly, future evaluations should measure the access that rural complaints from rural women whom João had accompanied to the hospital. children have to university educated doctors. None the less, we also must To evaluate future projects, we believe it is important to measure examine the training and competence of other people the child will meet people's knowledge along the therapeutic itinerary. Do they know who to along the therapeutic path, something that will not always be easy to evaluate seek out when they have different problems? Does the health agent know quantitatively. For example, we were impressed with the good and respectful the proper specialist for the problem? Can this agent (and other first relations between the health agent of São Paulo (Lábrea) and the blessers responders) identify common symptoms, knowing which should lead to the and midwife who also serve the community. They all trusted each other and malaria specialist, the midwife, the rezador, the western doctor or nurse? In knew which problems should go to different medical "specialists." João the three communities we researched, it is clear that mothers are very good Silva, the health agent, told us in no uncertain terms that many mothers at diagnosing traditional illnesses and putting their children on the correct complain of health problems like "fallen wind" (vento caído) and "fright" path to a cure: they know how to get cure for the evil eye, for fallen wind, (susto); had they taken their children to the health post or hospital with these for quebrante, and for the flu. Even with a serious problem like diarrhea, problems, they would have been laughed out of the place. The rezadors, mothers seem to have found an effective -- if not always medically approved however, know how to deal with the problem, and the child would get better. -- path. Considering the high number of children who suffer from diarrhea In the same way, the midwife from the indian reservation across the river and the terrible quality of drinking water, it is surprising that more children knew perfectly well when complications to pregnancy demanded the advice do not die from diarrhea. Between the work of the rezadors and the of a Western doctor, and she would always talk with the health agent to diarrhea solution distributed by some health agents (and in pharmacies)
DOCTOR
PARENTS
PARENTS
REZADOR
DOCTOR
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something is working. We are much more concerned with the path to a cure when children become ill with diseases that are newer or have not yet been culturally assimilated: malaria, hepatitis, parasites. The local culture has not yet come to a way to understand and treat theses problems within their quotidian social practices.
WaterandSewage This research project offers important contributions to understanding the tragedy of water in the Amazon. In Brazil, we often boast of the Amazon basin being the greatest reserve of fresh water on a thirsty planet, so it is hard to imagine that potable water is unavailable in most of the region. Nonetheless, it was in fact one of the major problems in all three municipalities. There is no systematic water treatment even in huge cities like Manaus, let alone in small rural communities. We can only describe this situation as one of public calamity, a chronic disaster area in which the only way to get clear water is to import it in plastic bottles from São Paulo. Local administrations appear to have little or no concern for water purification; in one case, when a mayor put some effort into constructing a small water treatment plant in Santa Isabel, his successor immediately shut it down as a way to undermine future support for a rival. In the uncommon cases that individual families treat water, they do it most often with sodium hypocloride, distributed through health agents (though not always available). This treatment cannot serve as a long term solution, however: the government often fails to provide the drops to health agents, few families use the drops, and everyone who uses them complains of a terrible taste.
Among the hundreds of families interviewed for this study, only three (less that 1%) say that they drink treated water, and all of them are in the urban area of Santa Isabel (there is a certain reason to doubt that they are correct, given the recent closing of the Santa Isabel water treatment plant). Also in Santa Isabel, 31 families drink water from wells with water ranging from potable to unsafe. Some families in every municipality use rainwater. However, the great majority of children in these areas, as in the rest of the Amazon, drink contaminated water. Unfortunately in Atalaia do Norte -- the only place in this study where most of our sample had municipal, piped water -- the hundred families that drink water straight from the faucet all believe that it is treated, while in fact in comes straight from the river. Considering this natural and political disaster, it is no coincidence that more than half of all illnesses cited by mothers are vomit and diarrhea. The one counter-example comes from Lábrea, where the health agents in the two communities we researched make a great effort to educate about and purify water (78% of interviewed families say they Do you use hypocloride? use hypocloride). In São Paulo and Terra Solidária, 34% of illnesses are digestive. In Atalaia, where the water quality is terrible and only 10% of families use hypocloride, 53% of mentioned illnesses are digestive. Even on a small and informal scale, teaching people how to purify their water makes a difference in the health of children. We see equally worrisome data on waste Atalaia Lábrea Sta. Isabel
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management. The Brazilian census gathers information on the sewage system in every Brazilian home, and the results are calamitous in all of the areas we researched. Only 5% of homes in Lábrea have adequate sewage, 7% in Santa Isabel, and not a single home in Atalaia. Rather more have what the census calls "semi-adequate" sewage systems; our research helps us to flesh out these categories.
community planned and built as charity by the catholic church. They provided an outhouse with a hole in the ground behind each house. Though the families in the neighborhood are even poorer than average in Lábrea, this sewage system is among the best in town. In the rural communities, the bathroom is the river or the jungle.
3. Santa Isabel. 1. Atalaia do Norte. In According to the Bathrooms the Ponte census, Santa Neighborhood, Isabel has the aia ia a l where houses are highest number of Atal a At l b el a e a e b s r I a built on stilts over homes with ta Láb nta Is Sa n a S the river, several adequate Semi-adequate families have an outsanitation, and our Inadequate Adequate house connected by experience in town a bridge. A hole in confirms this data. the floor or seat goes In rural areas, the directly into the situation is more Baseline river. People get mixed. In some IBGE water from the river communities, the in almost the same situation is the place, and children swim and bathe in close proximity to where same as in Lábrea or Atalaia: the bathroom is the river or the jungle. everyone defecates and urinates. As only a few families built these However, in Tabocal and Cartucho the communities have built outhouses, other people ask to go through the houses and use them. community outhouses, and other villages are considering similar In neighborhoods not built over the river, it is common to have a solutions. shack out back for going to the bathroom, but there is no hole or septic tank. Excrement lies on the floor until someone collects it and Sewage is a serious problem in all three municipalities, clearly a takes it to the river. In rural areas, the bathroom is either the jungle causative factor in the high levels of diarrhea, digestive illness, parasites and or the river, which is a little healthier than the situation in town, but (in the case of Lábrea and Atalaia) hepatitis. For most families, there is little not much. difference betwen water used for excrement and water used for bathing and drinking. 2. Lábrea. Much of the research was conducted in Terra Solidária, a We are also extremely concerned by the lack of recognition that
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s n o i s u l c Con
There are huge and chronic problems in the collection of epidemiological data in the state of Amazonas: the lack of trained professionals in rural areas, the decision to define rural Amazonas as a "demographic vacuum" in national research studies, the interference of politicians and bureaucrats, and the low capacity to diagnose illness and morbidity. All of these factors make it almost impossible to use official figures as the basis for a baseline for future evaluations. Nonetheless, we identified four areas that can serve as a foundation for such a baseline: pre- and post-natal care, changes in the illness chart and the therapeutic itinerary, and the question of water and sewage.
Conclusions
Prenatal and childbirth: In the municipalities we studied, more than half of registered child deaths occur in the perinatal period. The data that our team gathered on the high number of miscarriages and the poor pre and post natal care corroborates that this issue is a serious problem. Analyzing these metrics diachronically will create a strong basis to evaluate the health of children when they begin their lives. Illness chart: The illness chart we developed over this research project offers a powerful tool for future evaluations. A reduction in the number of cases of diarrhea is a clear goal, and should go hand in hand with water and sewage reforms. The change in other illness categories cold also teach us interesting things, though this data must be analyzed carefully: a reduction in the number of cases of flu and an increase in malaria cases could indicate, for instance, that families have improved their ability to diagnose common illnesses. An increase in reports of parasites should also indicate better consciousness of health problems. Therapeutic Itinerary: Very few mothers and children have access to professional doctors, and it would be positive to see this availability increase. However, understanding and knowledge is equally important here: do mothers and fathers know where to
Boa Vista,Santa Isabel doRio Negro 116
Foto: Rita de Cรกcia Oenning da Silvas
water causes digestive problems: this disconnect is present in all three municipalities.
take children when they suffer from different health problems? We have perceived that many mothers know how to deal with traditional illnesses of the region, but they are very weak at diagnosing and treating diseases that come from contact with the modern world, like malaria and hepatitis. Water and Sewage: Though the Amazon is the greatest basin of fresh water in the world, none of the researched communties have potable water. The populations does not understand the connection between dirty water and the digestive problems their children face. In this area, both our work on the ground and the numbers from the Brazilian census serve as an excellent baseline for watching change. The families we studied in Atalaia, Santa Isabel, and Lรกbrea are not a true random sample of life in the Amazon. As such, it would be important to return to these or similar communities if evaluators want a reliable metric for observing change in children's health in the Amazon.
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8 r e t p a hC
Film Analysis
Rita de Cรกcia Oenning da Silva and Kurt Shaw
O
ver the course of writing this book we have made an effort to speak intermedically, constantly translating between Amazonian and European ideas of health, illness, and health care. In the seven films we made during the research project, this dialogue is even more intense, because here local people speak for themselves, using concepts of health, hygiene, and daily life that may sound strange to foreigners. These films offer an extremely rich well of ideas and challenges, but they are not always easy to understand, so we use this chpater to work through the content of the films and what they contribute to a general understanding of care and children in the Amazon. For each film, we begin by narrating how it was made and then go on to use the language of the film to address issues in Amazonian child care and health that we have not considered in other parts of this book.
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Written in the Sand
When we (Kurt Shaw, Rira da Silva, and Helena da Silva Shaw) arrived in Santa Isabel, Rosilene Pereira had only just begun her research in the municipality. For this reason, we accompanied her on trips to various communities to see if they would be interested in participating in the research and in filming several videos. We spoke with leaders in Cartucho, Boa Vista, and Tabocal do Euneuixi, and Marlene, the administrator of the final village, enthusiastically asked us to come to her community. On an iPad, we showed a series of films we had made with other children around Latin America and promised to return two days later. When we returned on Wednesday, the village was ready for filming. After a full day of games, talks, and filming -- all of them animated by Helena, who, at two years old, wanted to know all of the children in the community -we were tired and sweaty. With a group of twenty 1-12 year old kids, we sat in the shade of a jambo tree to rest, and we asked if anyone had a story to tell. Leidiana dos Santos Miranda, a ten year old girl, told us she had a story to tell. Her narrative serves as the basis for
the film. In the past, we have animated many children's drawings into cartoons, but in Tablocal we hadn't brought enough paper or pencils for 20 kids. What we had was a flat area of white sand and a bunch of branches that had fallen from the tree. We invited all of the kids to draw characters from the story, and then we photographed their art. Cutting and pasting in Photoshop created the basis of what would be a very interesting aesthetic for the movie. The film tells the story of a turtle who was walking through the mud when a tapir stepped on him and forced him down into the muck. Only after many years did he struggle his way out. He went to find the shit left by the Tapir long before, and asked, "Where is your master?" "My master went away two years ago." The turtle continued to look for the tapir, asking yet another shit he found. "My master went away two years ago." And so on with the story: each excrement brings the turtle closer to the tapir, while also showing him the geography of the jungle: woods, streams, islands, the river. Finally the turtle finds his enemy sleeping on the ground. The turtle bites the tapir's scrotum, and though the big animal struggles and struggles, it cannot escape. Finally, exhausted, it dies and falls
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into the water. Once he has won, the turtle calls his friends and family for a celebration. "I'm nine years old today!" he declares. Tall tales are a traditional teaching tool among river people, and this one points to two very important facts: the beings in the day to day life of a child come to life and take an attitude: they talk, desire, and have a perspective on the world. The shit also talks, a very important detail. It isn't an abject thing to be sent away, but -- for people who depend on hunting -an important clue to follow. These children live with the excrement of people and animals in their everyday life, and they know that it speaks in many different words, where their master is, how long ago it was left, if the being who left it is healthy or sick… Predatory animals have a different relationship with shit than we moderns. It is interesting that most of the conversations with the shit happen near the water: streams, rivers, wetlands, floodplains. People who live along the river know that they must take special care with these places, especially the streams and springs where they get drinking water. As populations grow and move from one place to another, the traditional care with which they treated excrement may have been reduced, but in stories, it is still something to be thought through. The girl's narrative style is excellent, for storytelling is prized among the Nadeb. Children know that a storyteller must speak with grace and efficiency. They must please the audience. They make the
story speak to the audience: for instance, the turtle has his ninth birthday at the end, the age of many of the children who spoke and listened. The slowness of the animal is shown by the repetition of the story, but this narrative device also shows the animal's persistence. The same day that Leidiana told this story, many other kids also told a tale, but not all of them grabbed the audience's attention. Others knew how to please the public, but they didn't speak well or loudly enough to record. Leidiana, on the other hand, was able to use the story to teach and learn. It is a useful tool to consider when we think of educating children and their families about health.
Caring for people
The other film we made in Tabocal gives clues for helping us to understand the relationship between food, health, and the seasons, issues that all of the areas researchers addressed in their chapters. For this reason, we'll use this space to think about what the film means for understanding the day to day life of children, and how their fun undermines any simple opposition between work and play, study and games. It's hard work to climb an açaí palm. You can't get açaí, essential to the Amazonian diet, without sweat and a little bit of blood and danger. However, as
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we see in the film, climbing the açaí palm is also a game, and children treat the activity in the same way that an urban kid sees a playground: laughing, challenging each other, showing off. Also as in the case of a playground, part of the joy of the climb comes from the encounter with danger and the pride of overcoming something difficult. Smaller children learn the game on smaller trees, scrambling up to gather ingá and jambo. In the modern world, we have learned to divide the fields of human activity (or children's activity): here, we work; here we rest. Children learn in school and play in the playground or the yard. We recognize an apparatus to mark off these areas, whether the primary colors of the playground or the white walls of a hospital. In the interior of the Amazon, like in many traditional societies, this division doesn't exist. The same space has many purposes and the same activity is done for many ends. The jambo tree in the common area of Tabocal is where little kids play, and where they drew in the sand. It is also a place to learn, where storytellers tell myths from various tribes. Kids learn to climb the tree and teens harvest the jambo to feed their families. It is interesting to see how rural families deal with the new division of spaces when they move to town. In both Lábrea and Atalaia, small businessmen have taken over part of the public plaza to create for-profit playgrounds with trampolines, slides, and other colorful toys to draw kids' attention. The price doesn't seem high to families used to paying 20 reais for a movie ticket, but paying 2 reais for 7 kids will force a mother to spend 20% of a month's Bolsa Família. In order to avoid conflict, mothers make an effort to keep their kids far from the plaza, effectively reducing their chance for leisure and social capital. The plaza, already marked off as a place for the rich, becomes an even more segregated place. In both Atalaia and Lábrea, mothers responded to the problem by requesting playgrounds and parks in their neighborhoods. The games in the plaza teach them to desire the
new things of the modern town, but their excluded social position makes them demand that these things be public and communitarian. The film in Tabocal shows us that childhood at the edge of a river never functioned like that, but as they move to town, mothers are clearly aware of the need to rethink spaces for children.
Banhos
The brief film "Baths," set in Atalaia do Norte, emerged from an interview between Inara Nascimento and a young mother who had come to Atalaia from the town of São Paulo de Olivença, several days down the Rio Solimões. In Atalaia do Norte, baths are not a common treatment for
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childhood illnesses, but their were in São Paulo, and the young mother wanted to keep up the tradition that her grandmother had taught her, because she saw that it worked. Inara asked her if she would be willing to make a film when Kurt arrived in town, and she accepted. Her sons and daughters learned to use the camera and filmed the conversation with their mother. Many people think of the Amazon before the arrival of Europeans as a series of isolated and disconnected tribes, but archeological evidence and oral history shows exactly the opposite. The rivers provided great roads for movement, with commerce in products, ideas, people, and medicine. "Baths" shows that these local exchanges are still strong: when neighbors began to see that the baths did good things for kids, they asked their new neighbor to teach them, to share ideas and medical knowledge. The mother now needs to call her family in São Paulo de Olivença to ask for the leaves she needs for the different baths -- they don't grow in the jungle around Atalaia -- which strengthens the connections between the distant towns. Another interesting reflection that emerges from the film is the difference between bath water and drinking water. The water for the baths must be ritually and really pure, but as the mother explained this fact, her sons were swimming under the house, right next to the outhouse where the whole neighborhood goes to the bathroom. The family takes water from that same place to drink. So while people may be capable of understanding the need for pure water in a ritual-medical context, that does not help them to understand the relation between contaminated water and childhood diarrhea.
O Rezador The Rezador is one of the most interesting films in the collection, not only because of its content, but also because of the way it was made. As they researched child health in Atalaia, Inara and her research team were impressed by the constant references to rezadors ("Prayers") in the Ponte neighborhood. Whenever a child was sick, mothers would first take them to the rezador. Nurse, doctor, hospital… they were always later steps after the rezador had given his or her recommendation. Nonetheless, it wasn't easy to talk with a rezador. Knowing that the formal medical system has contempt for them, few are willing to talk about their work to a stranger. Inara went to talk with many of them, so much so that she soon became known as "The woman who wants a rezador but doesn't have a sick kids to pray over." And when she finally found the person whom every mother said had cured her child, the person would say, "No, I'm no rezador. I say a couple of prayers, but you should really talk to so-and-so." So-and-so would then refer Inara to someone else, and on and on down the line. While Kurt was in Atalaia, we interviewed several women who said that a certain rezador had saved the lives of their babies, so we invited two older siblings of one of the cured babies to look for Seu Raimundo, the most famous rezador in the neighborhood. We found him, a bent old man with a flash in his eyes, walking slowly along the bridge that led from his house to land. The children greeted him and Inara explained that we wanted to speak with him. "Me?" he replied with real humble curiosity and surprise. "A useless old man who knows a little magic? No good that, ma'am." We persisted, and Seu Raimundo invited us into his house to talk. Seu Raimundo wan't very good at reflection on what he did or how it
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worked. He explained is as the result of the effort of "the Mother in Heaven and the Sainted Apostles," a phrase he repeated many times. He claimed that all he did was to call on the intervention of these demiurgic figures; he did, however, recognize that making this call was a gift that not all people have. It demanded time and patience, for the saints would only respond after many prayers and many repetitions. It soon became clear that prayer was not the only thing that Seu Raimundo did, though it certainly was the thing he thought most important. He would diagnose the illness that the child was suffering, and not only at the first meeting, but also each prayer and when the child would arrive for a new session; normally there would be three each day, at morning, afternoon, and all night. When a mother came with a child, he would always evaluate whether he was the right person for that problem, and in many cases he said he was not: the mother should seek out a specialist rezador or should take the child to the hospital. "There are some ills I can cure, but others are only with a doctor," he explained. If his prayers did not seem to work, he would re-think his diagnosis and then refer the child to another rezador or to a doctor. He seemed to be a kind of triage agent in the neighborhood. In the intervals between prayers, he would also talk with the mother about what the child needed: pure water, tea with certain herbs, more time nursing‌ These were often similar to recommendations mothers would have gotten from a doctor.
We don't have space here to understand why the work of a rezador is efficacious: a doctoral dissertation would be necessary just to start the debate. Certainly the prayers have a symbolic power, they strengthen the ties between mother and child, give hope, and keep an eye on a child in the hardest times. The rezador also offers home remedies like rehydration salts, more mother's milk, or tea. Most importantly, mothers believe in the rezadors and they say that their action works. They complain about the hospital and the health posts, the arrogance and incompetence of doctors and nurses‌ but we never heard a complaint about a rezador. Normally, the rezador is a specialist in children's health, though some also deal with gynecological problems. It seems that the rezador is able to "close the body" -- a local concept on which Rita da Silva elaborates in the first chapter of this book -as we see in the the first case in the movie, the tiny baby whose head was about to open. Even so, Seu Raimundo also knows quite a bit about adult health: he explained that for many years, he worked as a rubber tapper, and in the barracks where many men lived together, infectious disease was rife. He was famous in the rubber camps as a man who could diagnose and cure illness with teas and herbs, and became an amateur doctor. He told us that this experience was more important than any formal schooling to understand health.
Still: ORezador
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Sou Bilingüe
"Sou Bilingüe" (I'm Bilingual) tells a well-known story: children of indigenous families who live in the city, where few people speak the same language as do their parents. Edilson Paumeri expresses the anxiety, shame, and confusion of children living between two worlds: we heard similar tales from many families who had come to town in Atalaia or Lábrea. Even in rural villages in Santa Isabel, language is a fraught issue: in a community like Tabocal where people come from 10 different tribal groups, Portuguese and Nenhengatu come to be the lingua franca. The teaching methodology of Sou Bilingüe is problematic: teachers instruct Paumeri and Apurinã as if they were teaching English and German, with lessons in grammar, syntax, and conjugation. We have seen similar problems among many indigenous groups who want to hold on to endangered languages. The great thing about the program -- and especially about its founder, Edilson -- is that it deals with the aesthetic issues around language. People in the city -- and in many cases, even indians who have been there for a generation or more -- make fun of indigenous speech as "ugly" and "primitive." This judemental ear, as if a fashion maven were looking at someone in old and ripped clothes, shames indigenous children. In this context, insisting that the paumeri and apurinã languages are
Still: Sou Bilingue
beautiful is essential. Teachers insist that the language is hard, that whites never lear to speak it right, and that kids should be proud of their words and their people. If they succeed in this goal, the organizers of Sou Bilingüe will have done much to improve the lives of indigenous children in Lábrea.
OBotoSeqüestrador
As we motored up the Purus on our way to make the video "The Health Agent" (described below), we saw many river dolphins in the water. In the community of São Paulo, after I (Kurt) spoke with several hunters who were coming back across the river with a deer and an agouti, I saw three elegant dolphins swimming slowly up the river, using their sonar to find fish. I commented on how I admired them to the boatman, a young caboclo names Louro. "Yeah, but you gotta watch out," he told me. "Really?" I asked, confused. "You work with kids and you don't know? The dolphin likes to steal kids for himself." With that, he told the story of a child who had been kidnapped by a dolphin. Later, I asked him to repeat it for the camera. At the end of the trip, as we were disembarking at the port of Lábrea, Louro told me "If you want to meet the boy, he lives on the other end of town. He's big now. I can take you there, and he'll tell you everything." Though my plane was scheduled to leave in an hour, I didn't want to miss the chance to meet a boy who remembered his time as the prisoner of dolphins. We caught a taxi and went straight to the boy's house. The door was attended by a tall man with a cleft palate so severe he would barely speak. On his upper lip grew a cancer or cyst that extended beyond his nose. His wife appeared in the window opening and asked us
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what we wanted. She remembered Louro, the son of her old boss, and greeted him dryly. Louro told her the story of the dolphin and asked if her son was around to tell it from his pint of view. No, the mother responded. He was at school. I then asked her if she wanted to tell her memory of the event. "When the boy got lost?" I nodded. "He got lost, Five days. That's it." Her phrases were short and broken, but it was clear that she did not want to talk. I thanked the family, said good bye, and returned in the taxi to the hotel and then the airport. "Another time when you come," Louro said as he departed, "I'll fix it with the boy. He's my friend. He'll tell the truth." After the magical realist encounter with the boy's family, I first wanted to interpret the strange story of the dolphin abduction psychoanalytically: the strange face of the father and his inability to speak must have reminded people of a river dolphin. The tale represented a conflict over custody between mother and father. A few weeks later, talking over the film with Thereza Menezes -- an anthropology professor at the UFAM and an expert on the Purus -- made me re-think my simple analysis. "In Lábrea," she explained, "the river dolphin represents the boss." If this were true, then the kidnapping of the boy could be an implicitly critique of the alienation of labour in the rubber economy. The boss robs the worker of his rubber, his money, his youth, his health… even his son. And to get the son back, the mother even had to pay
Still: OBoto Sequestrador
ransom. It was an interesting interpretation, even if it was odd that the son of the boss would offer this critique of the relations of production. What is certain is that families that live on the banks of the Purus see the river as a source of desire and danger. Without the rivers, no one survives in the Amazon. Water is fish and transport, fertilizer for the fields and an ambulance that takes your son to town when he is sick. It is also the space for recreation and leisure: like children everywhere in the world, kids in the Amazon love to play in water. However, the river is dangerous. A father who lives close to São Paulo pointed across the Purus and said, "There, where the stream comes into the river, it's full of caimans. Big ones. Last year I killed a 17 footer. No way I let my kids play alone in the water!" The constantly shifting currents of the fast moving water also scare parents. Though we took beautiful photos of children playing in the water in the Euneuixi near Santa Isabel, we should not fall into a romantic illusion about the river. It is dangerous, and the story of the kidnapping dolphin illustrates that
The Health Agent
Before I arrived in Lábrea, Willas and Rancejânio had already developed a friendship with João Carlos da Silva. He and his family had migrated to Lábrea four years before to make it easier for his children to go to high school: before that, they had lived in a small community about three days upstream. João's wife was a volunteer in the Pastoral da Criança and had been very helpful to the researchers, and João himself had introduced Willas and Rancejânio around the community. Though João now lived in Lábrea, he continued to work far upstream. Each month, he would get into his long-tail canoe and motor twelve hours to get to São Paulo. These long and tense trips had left him
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with a herniated disk and terrible pain in his sciatic nerve. "I love my work," he told me one afternoon as we stood outside a house in Terra Solidária, waiting for Willas to finish an interview. "But the agony of 12 hours in the boat…" He sighed. "I have to go again on Sunday." My sciatic nerve went off because of a bad way I carried Helena, not from the altruism that had herniated João's spine, but I knew how the pain must be on that trip. "Listen," I said. "I want to see that community. I have the money to pay a fast boat. How many hours to São Paulo with a 40 horsepower motor?" "Three." "It hurts less than twelve. We could go together. If you like, I can even make a film about your work as we go." João accepted. He even liked the idea: he had worked as a health agent for almost 20 years and knew he was good at it. It would be a chance to share his knowledge and experience. I won't recapitulate all of the lessons from the film here; João Carlos does it much better in his humble and inspiring way. The basic point of the movie was to show the good impact on a remote community when its health agent does his job well. First, prevention makes a huge difference: with his emphasis on hygiene and clean water, João Carlos has managed to reduce many common childhood problems like diarrhea. Even more important, though, is that now people in the community know that they can trust someone when it comes to health. A malaria agent can diagnose malaria and even prescribe medication. Pregnant women know that they can continue to work with the local midwife, but when they need it, João will go
with them to the hospital. Mothers and fathers explain problems to the agent, and he helps them understand whether it is a problem for the rezador, for the malaria agent, for someone who knows herbs… or whether it is time to take a boat to the hospital. João Carlos also connects São Paulo with the world "out there" and with the government, helping to get documents for the Bolsa Família, a SUS health card, and getting people in touch with the church or others who might be able to help with non-medical problems. Beyond that, he brings news from Lábrea and "The other São Paulo," explaining the plot of soap operas that people get on their parabolic antennas but don't understand without any experience of the city. He also helps people to understand fair prices and trade, so they aren't made victims of the commercial boats that ply the river. Sadly, there was no more sunlight to film as we talked with the older couple that gave us a space to hang our hammocks for the night. They complimented João Carlos for hours and as he prepared to sleep the old man said, "I've lived here for 40 years. I love this place. But I tell you this: if João gives up this job, I'll have to move to the city. I couldn't stay here." A good health agent doesn't just care for the health of children and adults. He makes rural life possible in the midst of modernity. In the interview that became the basis for the film, I didn't ask João Carlos what had made him such a skilled health agent. He is a humble man and I don't think he would have liked the question. Even so, I'd like to reflect a little here on that question: what does it take for other health agents to have as big an impact as João Carlos?
Still: OAgente deSaúde
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The first fact is simple: 20 years of work. After years of working on the banks of the river, João knows how to diagnose problems in the blink of an eye. With the description of a couple of symptoms, he knows if a child should be tested for malaria. He knows different kinds of diarrhea and what causes them. This wisdom comes only with many years of experience. Twenty years of work also means that he has built years of trust with the people of São Paulo (not 20 years; for many years he was health agent in his own village). Mothers and fathers don't just trust him: they see him a friend, and not just a professional who comes by their homes from time to time. With these long years of work, he has also won the trust of health professionals in town: when he brings a patient in, they listen to him and know to treat the patient well. Unfortunately, few health agents ever get the chance to have so many years of experience: new mayors almost always fire all of the health agents to put their supporters in their place. Neither João Carlos nor I understand how he escaped these mass pink slips, but he has. Second, João Carlos sees his work as a mission, not just as a job. When Marcos Pellegrini, an advisor to this research who has worked in the Amazon for decades, saw this film, he said, "That dude was trained by the church. The CIMI or the Youth Pastorate, one of the left wing parts of the church. You can hear it in his words and see it in his eyes." And in fact, 20 years ago in the upper reaches of the Purus, it was progressive sectors of the catholic church who trained health agents. People who have stuck with the work over those twenty years have a serious commitment to their work. It is an ethical service to the community. João Carlos earns a decent wage: 900 reais a month. He may be one of the best paid men in Terra Solidária. Nonetheless, he often spends much of his salary to buy gas to travel to São Paulo. The current mayor has provided gasoline for his work, but it wasn't always that way. Finally, João Carlos is a good health agent because he knows how to listen and to respect. After years of work with trained medical professionals, he no longer believes in quebrante, fallen wind, or the evil eye. "You can't prove that sickness with science,": he told me off camera. "But you see that children suffer from them. And parents suffer even more. The rezador prays, the shaman does his magic, and the kids get better. So I say, 'Go to the rezador.' But when I know it's something else, I send them to the hospital. That's serious stuff." He keeps up a good relationship with the rezador and the old women who know herbs. "I did my studies on what works and what doesn't." He collaborates with the midwife to watch after pregnant women. This respectful relationship with families and traditional medicine makes the community trust him, and it makes them understand that when he says it is time to go to the hospital, prayer and herbs aren;t going to cure the problem. In many places, health agents don't do their jobs. In Atalaia, many people don't trust the agents: they say they gossip and don't know what they are doing. Party hacks often get the job and get a salary for doing nothing. But two days with João Carlos da Silva show the difference that a health agent can make. When the system works, it make a huge difference in the lives of children and families in rural areas.
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9 r e t p a hC
Eddies of Power
Health administration and local hierarchies in the Amazon
M
Kurt Shaw
ore than twenty years ago, after seeing the climactic changes on the lands where they had lived for the last century, a group of Kokama indians made a dozen huge rafts and floated down the Solim천es River toward the Brazilian border, whence their oral history said they had fled in the late 19th century. Twenty families then paddled up the Javari River and won permission from the mayor's office in Atalaia do Norte to build a community on a bluff above the river, some hours by canoe above the town center. Over twenty years of work, they had built the prosperous village of S찾o Pedro, with a community church overlooking the curve of the river. Inara Nascimento -- head researcher for the project in Atalaia --, Nilo Panduro -- a local Kokama leader --, and several families who had left the community so their children could continue their education all traveled up the Javari by motorized canoe. For Inara and I, the trip wold be an invaluable way to understand health in rural areas of the municipality, while the Kokama families saw a free opportunity to visit their parents and grandparents, and to eat good country food. After we helped out with the manioc harvest and the preparation of lunch, Inara and I walked through the community with Nilo -- born in S찾o Pedro but now a resident of the town center -- to ask questions about heath conditions in the village. The houses were strangely empty, and soon we learned that just that morning, two full canoes had paddled down the river toward the hospital; more than ten people had malaria. "Last year, we had a health agent, and he could do the test and even give us medicine," a church elder explained. But then the new mayor took power, and he fired everyone. It's been months since we had a health agent." "That mayor there?" I asked, pointing to a political poster on the wall; I had seen similar propaganda in
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many homes in the community, now eight months after the election. "Yes," he responded, without a thought of the tragic irony that the candidate the community had supported had taken away one of the community's most important resources. In the brief time that the researchers for this project were in the field, the mayor of Atalaia do Norte fired every health agent. The mayor of Santa Isabel do Rio Negro fired 75 rural teachers. People complained a bit, but in the way that one complains of the weather: unfortunate, but part of life that you can't do anything about. After speaking with the church elder, we moved on to another house. Nilo knocked on the door to ask if we might talk with the parents about their children's health. The people who lived there -- Nilo's distant relations -- firmly refused to talk with us. Offended, Nilo walked back to us and directed his steps to the next house. "I made the mistake of talking about 'indians'" he said. "This family doesn't want to be Kokama any more." "Why not?" I asked, thinking that perhaps they hoped to overcome prejudice associated with the name, or to be seen as more modern. "It's that they think we -- the leaders of the Kokama Association -they think we're earning our bread at their expense. We're not. I never earned a cent as the vice president of the Association. But they see us with a canoe, gas‌ they think we must be rich." In the Amazonian communities where we did the research for this project, power doesn't work like we learn in political science classes. Power has other dynamics and does other things. In this essay, I would like to begin with these two anecdotes about the Kokama as a way to think a new theory of power in the Amazon, seeing it as based on a system of resource flows where the abuse of power is easy or perhaps even obligatory. Thanks to the huge popular protests against corruption in 2013, criticizing corruption has become fashionable in Brazil. As we know, corruption is common in many countries, rich and poor, but these protests
and the reflection that has accompanied them have shown a particularly Brazilian style of corruption, and that universal theories of political morality may not be helpful in finding a solution. Normally, we understand corruption as something outside of the norm, a crime emerging from the perverse will or desire of a political agent or group: it appears a subjective act. Though many people will call the problems associated with the misuse of health resources "corruption," I want to argue here that it is not a subjective or moral problem. It has to do with the encounter between federalism and the philosophy of power in the Amazon. The government, failing to understand how the distribution of resources serves as the basis of power in the region, has created public policies that make corruption and inefficiency almost inevitable at a local level. If we want to develop truly effective policies, we must understand the way that this power works, so that these political dynamics do not, once again, serve as a sand bar upon which our hopes for change are shipwrecked.
? n o s r e p a e k a m e oH w do w
How do we make a person?
Over the last decades, anthropology in Lowland South America has put a lot of effort into understanding a question that, at first, seems to have nothing to do with an essay about corruption in the health system: how do we make a person? In Amazonian thought, the formation of the body -- through painting, piercing, exercise, etc -- is the way that one creates a person. In the fundamental text for these studies, the argument is presented thus: "In fact, this emphasis on corporeality is situated within a wider concern: the definition and construction of a person by society. The physical production of personas is inserted in a context that thinks the social production of persons: this is to say, members of a specific society. The
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A person does not exist simply through his biological function, but through the way that corporeal and cultural practices inscribe this person within a certain society. "Person" is not an objective or independent "thing", but is dependent on the social relations established through marks on the body, words, and interpersonal activities. On the Upper Rio Negro, the arrival of Portuguese colonists mixed up this way of constructing the person. In his excellent history of the region, Gerardo Andrello notes that in the 19th Century, debt came to serve as the road by which a person was built: taking a loan from a white trader was the essential first step on that road. (Andrello, 75-89, 98) At first glance, this idea seem ridiculous: for a modern capitalist subject, debt seems to take something away from the person instead of adding something to him. In order to understand this contradiction, we have to understand the way the colonial context, where indigenous men (and they were mostly men, seldom women) took out loans in order to buy machetes, guns, and other tools from the traders. This practice inscribed the indian
as a subject both among whites and among the indigenous people, establishing a news series of social relations in which the "person" -- in both the practical sense of subject as the etymological sense of "mask" -- could emerge. For the indian who interacted with the whites, the essential act was to sign his name, literally inscribing his identity in the official economic system. With this signature or "x", the "savage" came to exist for the Portuguese, for the State, for the economy. Today we still see the force of this naming: Having a birth certificate, ID, or RANI Indian Card is the first step on the way to being part of Brazil, to gaining the rights of a citizen. The name, written and registered, marked the event of "coming to be a person." Economically, debt also continues to be important. On the roads and rivers of the Amazon, we still see traders who carry dozens of products and will sell anything on the installment plan. Their products are important, but it is equally important that the vendor -- or the man who comes to demand the next installment -- can call a name and put a person on the map. When the Rio Negro was colonized, the indian would have a relationship with the priest or with the trader; that person would, in his turn, mediate the relationship with national society. Andrello mentions in passing another interesting phenomenon that illustrates this mediating role:
Santa Isabel doRio Negro
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Foto: Rita de CĂĄcia Oenning da Silva
body, as we Westerners define it, is not the only object (and instrument) through which society forms individuals: it also has to do with naming rituals, ceremonial identities and groups, theories of the soul‌ all of these are associated with how different tribal groups construct the human person. The body, affirmed or denied, painted and pierced, shut up or eaten, comes always to occupy a central position in the way that indigenous societies view the nature of the human being (Seeger et al 1979: 4)
indigenous people would ask any passing white person to baptize and name a baby, thus gaining a Portuguese name and a kind of godfather or patron to mediate relationships with the colony. (Andrello, 99) By taking out a debt, the indigenous man would also interfere in the construction of personhood within the indigenous community. Eduardo Viveiros de Castro revolutionized anthropology when he showed that for many Tupi-Guarani peoples, the most important element in forming a person is to make oneself other, transform oneself into something different. As we have seen above, adorning the body as a toucan or jaguar forms part of the construction of personhood, marking and transforming the body. It is important that this process is not about a mark or a disguise: it allows a person to see the world through new eyes. Painting himself as a jaguar and stalking through the jungle as a cat teaches the indian man to see the wood with a new perspective. (Viveiros de Castro, 2003) Much of the creativity of Amazonian culture emerges from this effirt to transform perspective by transforming the body: in cannibalism, for instance, the real purpose is to ingest the perspective of the fallen enemy (or friend). Many wars have the express purpose of "robbing the songs" from another tribe, so that when I sing my enemy's songs, I will begin to see the world as he sees it. (Vivieros de Castro 2003, 274-7). In this way, when an indian man takes out a loan from a white trader, begins to speak his language and use his things, we can see it as a way to become a person in terms of national society. But as he wears a new mask and extends the range of perspectives through which he can see the world, the indigenous man also gains personhood in his own community. Finally, as we will examine in the next section, the tools and goods he brings into the community -- knives, weapons, silverware, pots and pans -- serve as a way to control and manipulate resource flows. These flows will provide him with status and prestige in his own community.
s w o l f g n Managi
Managing resource flows
Today, in many indigenous or traditional communities in the Amazon, the ability of local men (and sometimes women) to manage resource flows from the state and from other organizations confers power and status. In 2012, when we began to work in the small pluri-tribal village of Itacoatiara-Mirim, close to the more urban part of the town of São Gabriel da Cachoeira, we organized our work though Seu Luiz, the "Master of the Big-House " [mestre de maloca]. With resources from the Culture Ministry, the Federal University of Amazonas, and the state oil company Petrobras, Luiz and his family had built a traditional big house in Itacoatiara and had managed to recover many traditions that were at risk of extinction. For many people in the community, the big house had become a cultural and social center for the village. Nonetheless, Luiz was not the only leader in the community: there were also two evangelical pastors, elders from other tribes, city councilmen who counted on votes from the community, the health agent, the representative to the Federation of Indigenous Organizations of the Upper Rio Negro… In this complex context, Luiz strengthened his hand by managing resource flows. He and his son Moisés had learned about the RFPs and written proposals by which the state distributed money, and they did very good work inserting themselves into this world. Moisés took the job of health agent, which mean that health resources like medicine and access to the hospital also passed through the family. Another son was elected "capitão", responsible for relations with the city leaders. Even we, as we brought food for the kids in our video classes and the symbolic recognition of the camera, came to the community through Luiz and the big house. This situation is quite common in traditional Amazonian villages. It fits into the way they have long worked.
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"Santos Granero (1990) points out that in indigenous amazonian societies, political power is based in ritual knowledge, the ability to promote productive and reproductive processes. These 'production rites' give political authority to those who can realize them, because they are necessary acts to promote fertility, birth, prosperity, harmony, and well-being; everything necessary for social life. The monopoly over this knowledge is what distributes the control over the principal means of production in these societies -- which is to say, people (1990:30)" (Garnelo 2003A, 33)
through the family on the way to the people. With his A Thousand Years of Non-Linear History, the Mexican philosopher Manuel de Landa showed the power of applying ideas from non-linear mathematics -- commonly called chaos or complexity theory -to the social sciences. He begins with the math of resource flows in an open system: as in a river, resources do not flow calmly and quietly. They pass over banks, they create eddies and rapids, and their internal dynamics cause turbulence. A pattern that appears stable and constant may be only one of many possible stable states, an "attractor" as these mathematicians say.
The leader is the person capable of managing the powers of the world (and of other worlds) to bring health and well-being to the community. Traditionally, the "ritual knowledge" to which Santos Granero and Garnelo refer is shamanic power, developed through ayahuasca or other methods of accessing dreams and other worlds. Today, however, bureaucratic knowledge is equally important, because it serves to Something similar happens in Brazilian favelas. In an understand -- and then win -interview with the reporters from the internet-based news resources from the state. channel FavelaNews, a young reporter commented that In Itacoatiara-Mirim, this "Once upon a time, the kids in the neighborhood would look situation has not led to at the big drug dealer and say, 'that dude's the man. But now corruption. Luiz and his family that we're taking the videos from one community to another, do not rob material resources kids and teenagers are starting to regognize another kind of that they should pass onto the person. They say, 'that dude plays a mean forr贸. I saw him on community: in fact, their efforts TV.'" When black Americans talk about The Man, -- the person have brought many new who has the full right to be called a "person" -- they are resources to the people of talking about powerful white people. In the brazilian favela, Itacoatiara, bringing symbolic "The Man" is the actor capable of managing resource flows and material benefits to the from outside to inside. "Once upon a time," only the drug village. Nonetheless, we have to boss -- who brought money from rich addicts into the favela -recognize that this system serves had the right to be called The Man. However, with the as the basis for the power and presence of a new news channel, local artists could status that Luiz and his family manage the flow of social recognition, another essential enjoy in the community. They resource. In the past, artists could draw attention to the have captured the flows of favela, but their new visibility amplified their power. resources so that they must pass
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"Ilya Prigogine revolutionized thermodynamics in the 1960s by showing that the classical results were valid only for closed systems, where the overall quantities of energy are always conserved. If one allows an intense flow of energy in and out of a system (that is, if one pushes it far from equilibrium), the number and type of possible historical outcomes greatly increases. Instead of a unique and simple form of stability, we now have multiple coexisting forms of varying complexity (static, periodic, and chaotic attractors)" (de Landa 2000, 14)
It will be extremely productive to look at the ecology and politics of the Amazon through this lens. We have already seen how an indigenous community depends on the money, food,
Current system for resource transfers to and symbolic resources that come from outside, but we muncipalities should also remember that the geography of the Amazon also flows. Rivers dominate the landscape, and anyone who paddles across the rivers in a canoe will feel the hidden Federal Government Diverse sources of resources eddies and turbulence that run beneath the apparently tranquil surface. Understanding and awareness of the way the river flows is what gives the Amazonian boatman his authority and salary. Fish, the principal protein in the Amazonian diet, hide in the eddies of the rivers, and men must know where to throw a hook or a net to catch them. The Purus River brings the rich soil of the Andes down into the Amazon, fertilizing the bed of the river that the locals will use as a farm when the flood recedes. In a world where the principal form of wealth is State Government gold, a rich man is someone who possesses many things. In the Amazonian world of flowing resources, what matters is the ability to manage these fluxes, to develop an eddy around oneself. A person wins power and prestige -- or, in the City Government words of Viveiros de Castro, creates himself as a person -when he becomes indispensable to the system that distributes these resources. With this, after a long detour through the theory of Local Powers the person and non-linear math, we return to the questions of power and corruption in rural areas of the Amazon. Towns in the region, as in all of Brazil, are not autonomous or closed systems: they get a huge part of their annual In each of the three cities where we researched for this book, we budget through transfers from the state and federal government. The heard the same complaint: when a new mayor is elected, he fires all of the Amazon River begins in many parts of the Andes and then flows down to doctors, nurses and health agents, so he can put his people in their places. the sea; in contrast, the river of monetary resources springs only in Manaus Atalaia do Norte, eight months after the election, still didn't have even the and BrasĂlia. Power, prestige, and even personhood -- being "The Man" -most rudimentary health or bureaucratic system -- and this in a city where emerges from the capability to direct, distribute, and detour these the vice-mayor is a doctor! In European political theory, this practice resources. would be senseless, but when we think about politics as the manipulation
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of resources, it is perfectly logical. The function of the politician, in this theory of power, is to direct resources to his supporters, not to provide services to the whole population. In a world where resources are insufficient, this political strategy is quite common. Scholars of Haiti write often about the "politique du ventre" (the politics of the belly): in a country where there is simply not enough food for everyone, politics is a battle to determine who will have the right to distribute limited resources to his people. (Farmer 2004; Fatton 2002; Fatton and Dailey 2003) In Haiti, the county is truly so poor that politics almost has to function like this, but in the Amazon, the situation is not nearly so dire. Along the Purus River, peasants talk constantly of the rich harvests from their land and their river, and though the Solim천es and the Negro are not quite as rich, people can live well off the land. When we talk of health resources, though we would not want to say that there is enough money, the resources certainly aren't as scarce as they appear to patients in the useless hospital and health posts of the region. I suggest, then, that the political elite in towns in the Amazon must create scarcity, causing a crisis to then "solve" it. They may fire all of the health agents to make space for their political supporters, but they also need to remind everyone what happens when there is no health care in town. This fraudulent crisis, then, shows the people how much they depend on the politician, strengthening his political support and building up his status and personhood. The politician is indispensable for the system and as such merits re-election. We might even wonder if normal, banal corruption -- taking money for personal use from public coffers -might have the secondary benefit of reducing the resources that can be passed on to the people, thus justifying their limited (and politically motivated) distribution. During a conference of indigenous health agents in Santa Isabel do Rio Negro (3-5 April, 2013), we heard repeated complaints about the lack of gasoline for health agents to get to remote communities. Certainly, the amount of gas needed to get to these villages is immense, and federal
bureaucrats seldom budget enough money; it takes a lot of gas to get an agent into the field or a patient to the hospital. However, as we listened to the agents outside of the meeting, we heard regular rumors that in many cases, the agents didn't have enough gas to get to the communities because they had given it to political candidates. The agents didn't necessarily get anything in exchange for their gift -- they mostly just got promises from the candidates -- and their action really brought them more problems than benefits. They couldn't do their work, and they opened themselves to charges of corruption. So why did they give away their gasoline? Many health agents had the same hope as the politicians they supported: to make themselves necessary to the resource distribution system -- in this case, by being useful to the powerful politician. Not every health agent falls into this trap, of course, but some of them saw the future benefit of resource distribution to their communities as worth the risk. This low level corruption seldom works, because politicians in the Amazon know how to eliminate any threat to their monopoly on resource amangement. For instance, in a place where medicine serves as a basis for political legitimacy (Santos Granero 1990), a doctor could find the authority to lead the political opposition. Knowing this, mayors spend huge amounts of money -- and publicize their expenses -- to hire doctors from S찾o Paulo or Rio. They pay a couple of months of salary, then pay a little too late, then reduce the salary, then stop altogether. Finally, the doctor returns home. The city will never sign a contract with the doctor, pay social security or taxes, or anything else that would allow a doctor to claim worker's rights. A doctor is essential for health care, but the mayor can't allow any particular doctor to occupy this role for too long. A doctor can't be allowed to be a stone in the river with its own eddy, because that would undermine the resources managed by the mayor. Let's return, then, to the Kokama Indians who no longer wanted to be Kokama because they thought their leaders were earning their bread at the expense of the community. Normally, we think of corruption as
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anarchic form of grass-roots power. However, as new flows and brokers enter the equation, the eddies of power move to new places and subvert this traditional democratic leadership structure. The eddies of power no longer circulate around those who can persuade, who make of their lives an example for others, or those who listen to their people and to the voices from other world. Instead, power comes to lie with those who can manipulate the state: people who are not chosen by their communities and who need not live a life of moral example. The research for this baseline study was a real challenge because of the fear we encountered in almost every public servant we met. Few municipal health secretaries responded to Georgia Silva's questionnaires, and some even dodged her phone calls. When she managed to talk with them. they confessed that they feared to lose their job if they told the truth. Only one health agent would talk with us without the guarantee of anonymity, and doctors and nurses gave the same response. All of the people who work in the system recognized that they have to make up or clean up the data before they submit it to the state and federal governments. Without a doubt, their fear of losing a job is well founded. However, I'd like to suggest
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Foto: Rita de Cรกcia Oenning da Silva
getting rich from the public treasury, but we can see that corruption doesn't always work like that in the Amazon. Much to the contrary: in many cases health agents, indigenous leaders, and other brokers between local communities and the state suffer much more than they benefit from their positions. They spend their own money and time to go to endless meetings; they give gasoline to political candidates in hope that it might benefit their people. What they win in the process is not necessarily material benefits, but personhood. They win recognition by the state and they become resource brokers, eddies and points of turbulence in the flow of resources to their communities. The problem with this form of corruption isn't only that it makes it difficult to get resources to the people who need them. It also transforms and corrupts the local systems of power: with the arrival of new resources and new brokers, the strange attractors of chaos theory become even stranger. Many anthropologists who study leadership in the Amazon point out that leadership there whas always been based on example and moral suasion (Silva 2103), and the culture of these communities depends on this kind of leadership. Their philosophy and way of living together emerge from this almost
that this fear reflects a magical thinking about the way that the state distributes power and resources. For indigenous and ribeirinho people in the Amazon, the functioning of the state is a black box. They see politicians and they see results. Nonetheless, the system of RFPs, proposals, resource transfers, and auditing is so complex -- and so obscure -- that no one manages to understand the connection between the action of the politician and the result on the ground. Here we aren't talking about little things: schools, hospitals, roads and other essential government services emerge from these opaque processes. Put together the importance of these actions with the impossibility of understanding them, and people begin to see politics as magic, and they come to respect and fear the leaders/wizards able to make this system work. Robin Wright, one of the most respected anthropologists working on the Rio Negro, tells the story in this way: Illness -- especially sickness produced by human action (witchcraft) -- are normative mechanisms for regulating power. Leaders find themselves sin an extremely vulnerable position, like historical prophets and mythical heroes, because they will be the targets of people who want to level or invert traditional power relations. This is why the Baniwa are at a crossroads of history: in order to
get the resources that have been denied them for so many years, they need to slacken their insistence on leveling and egalitarian government. New leaders must have the space and power to negotiate changes, or they sacrifice their leadership. (Wright in Garnelo 2003A: 10)
The modern health system, with its new techniques and resources, threatens the traditional manner of apportioning power in the Amazon: though Wright refers to indigenous communities, we could say the same of caboclos and other traditional groups. Medicines, doctors, access to hospitals… all of these resources now flow along new courses, causing new eddies and floods in communities where political power is legitimated by health care. Leaders fear to lose their power, but because they don't understand how these new flows work, they see it as a magical thing, a spell that might turn against the wizard -- the politician, the leader, the broker -at any moment. As we saw in the first part of this essay, the Portuguese colony did not recognize individual indians, but only related to the trader, who would buy and sell with representatives who would come to trading posts. As the Kokama who long longer wanted to be Kokama looked at their world, they saw a similar logic at work. They wanted to be recognized like any other
In a research and film project among the Sáliva -- an indigenous tribe of the Colombian Llanos, sharing many characteristics with groups along the Rio Negro -- we were surprised to see that the president of the Sáliva Association was the person who least practices the rituals and quotidiana activies of his people. He spoke Sáliva badly, lived in a brick house, didn't eat Sáliva food, and spent the whole day drinking pop and watching TV. He even sold beer out of his house, something that all of the other people we talked with agreed was doing great damage to the tribe. Why, we asked ourselves, would the Sáliva possibly elect this person to "represent" his tribe? After working along the Rio Negro, I think I understand what was going on. Though he shared little with his people, the president -- as the "whitest" of the indians -- seemed most likely to be an effective advocate among the whites. The problem appeared when the community began to confuse identities: had he been seen merely as a resource broker, all would have been fine. But as president -- The Man who represents the people -- he became instead a role model for personhood and action.
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y d u t S e Cas Santa Isabel doRio Negro
citizen, but the Brazilian government treats indians as children, seeing them only as a group and relating to leaders and brokers. In that way, only the representatives won personhood, and not everyone in the community. The Kokama family wasn't ashamed of being indian: they continued to practice their culture and their religion, and they didn't move to town. They were simply tired of the need of a wizard-broker to manage the resources of the government and -- not understanding the black box of public money -- imagined that they could go straight to the source of the magic. They wanted to stop being Kokama because they saw that identity as a barrier -- a cause of turbulence -- for their relation and recognition by the state.
Foto: Rita de Cรกcia Oenning da Silva
Outsourcing Indigenous Health
Political theory declares contemporary governments to be "representative": the people elects councilmen, representatives, senators, a president to represent their ideas and interests, and those representatives will serve the good of the represented people. This idea lies far from the reality of Amazonian politics, where politics isn't legitimated by representation, but by the distribution and management of resources. Nonetheless, the concept of representative government continues to operate. Indigenous leaders and brokers claim to represent their tribes when they negotiate with the FUNAI (Indian Bureau) or other parts of the state. Leaders in Extractive Reserves use similar rhetoric. And the Kokama who no longer wanted to be Kokama thought that their representative was winning the recognition that they themselves deserved. When we understand the aporia between these two concepts of power in the Amazon, we can better understand why public health policy has so often failed. Here, I will analyze the way that the federal government outsourced health care for indigenous populations, but this critique could be leveled even more damningly against the way that local municipalities administer federal funds. In the 1990s, the Federal Government began to develop a new strategy for indigenous health care. Garnelo tells the story well: All of these factors brought about the Special Indigenous Health Districts (DSEI) in 1999. To make these Districts work demanded an immense commitment of human and financial resources. The financial resources were there: from 1999-2004 the federal budget for indigenous health care varied between 180,000,000 and 250,000,000 reais, something like R$500 per person per year. This sum is three times higher than for the general Brazilian population. However, the human resources problem was harder to address; in spite of the available budget, the National Health Foundation (FUNASA) had neither the quantity or quality of
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In the Vale de Javari and the Upper Rio Negro, health care was outsourced to new, small indigenous organizations: the Indigenous Council of the Vale do Javari (Civaja) and the Federation of Indigenous Organizations of the Upper Rio Negro (FOIRN). These organizations had been small and relatively informal, with tiny budgets and only nascent administrative capability‌ and suddenly the federal government began to transfer millions of reais to them. There was little training or consulting in the process, so the organizations hired who they could and who they knew: mostly family and community members. The result -- a fiasco -- was ordained before the first real was spent. It is much easier to write a post-mortem for failed public policy than it is to design effective ones, but I think it is worthwhile to dwell on two significant problems of this outsourcing: the government's failure to prepare the organizations, and the general confusion on the part of indigenous administrators. The government never trained administrators in effective management or accounting, nor did it provide the contacts with advisors who could have helped. I think, for instance of Shine a Light, the NGO I run. Many people who participated in the outsourcing We have staff with of health care to indigenous organization do not doctorates and Ivy have such a negative perspective on the League educations, but experience, to the degree that perhaps the term "failure" is misapplied. Some indigenous leaders we would have no idea remember it as a fascinating experience and an what to do if our important part of a process of training new budget ballooned 100 forms of leadership. (Luciano, 2006) times overnight. The
Santa Isabel doRio Negro
Foto: Rita de CĂĄcia Oenning da Silva
staff to provide direct health services. At the recommendation of the 10th National Health Conference, the practical arm of the FUNASA was systematically dismantled, and its physical plant and staff were passed on to the municipal health services. This happened from 1994 until 1999, when it was suddenly responsible for indigenous health care. The only solution the FUNASA could find to provide health care in indigenous villages was to outsource activities and services to municipal governments, indigenous organizations, and some NGOs. They assumed full responsibility for health services in indigenous areas. (Garnelo 2006:137-8)
government expected, however, that small indigenous groups would be able to do just that. On the other side of the equation, some indigenous leaders were certainly corrupt in the traditional sense, but the greater problem was their attempt to use these resources to transform the power structure of their communities. By putting family and allies in administrative power, they hoped to create new eddies and turbulence around new authority figures. After this failure, the Health Ministry decided to continue the policy of outsourcing, but now chose as a contractor the CaiuĂĄ Evangelical Mission, based in Dourados, Mato Grande do Sul. This NGO now provides health service in the Rio Negro, the Javari, and many other regions of the country, and is the third largest beneficiary of government
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lSo utions?
Solutions?
Earlier in this essay, I developed a metaphor between the Amazon River and the state resources that enter the Amazon: both are powerful rivers full of eddies, flats, waterfalls, and hidden currents. Transforming health resoureces into a smooth flow would be just as hard as calming the waterfall at S達o Gabriel da Cachoeira. There will always be turbulence, chaos, and strange attractors. The problem in the Amazon today is not so much that eddies and turbulence exist, but that the current flows benefit a small group of leaders and not the general popluation. We do not propose to create a frictionless system, but one where the turbulence serves democracy and the health of the people, instead of helping only a small elite who gather resources around them in the name of their communities. In Brazil's arid Northeast, Coronelismo caused problems similar to
Atalaia doNorte
Foto: Inara Nascimento Tavares
funds to an NGO. "The institution received R$71 million from the Health Ministry through the FUNASA, in order to serve about 30,000 indians." (Dourados News, 2012) In traditional terms, the MIssion is not corrupt: even its harshest critics say that it accounts for ever cent it spends. However, it certainly uses its position to manipulate an eddy of resources around itself and the church. We see a similar process occur in municipalities, often with even worse results. (Athias, 2004). In small towns, mayors, administrators, doctors, and even health agents see these federal resources as an opportunity to develop eddies around themselves, increasing their own importance and power in the local context. In this way, they try to make themselves indispensable.
those I have been describing in the Amazon. Brazilian Federalism created a system in which the federal government gathers the greatest part of taxes and then transfers a budget to municipalities and states, a system easily appropriated by the people who control the transfers. In the Northeast, the Coronel -- a local big man, descendent of a military leader or landholder -- would gather resources from the State and then pass part of them on to the people in the form of public works or charity. The people would come
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to depend on the Coronel, and would give him their votes as mayor or and favelas of Brazil, the Bolsa Family has created new strange attractors senator. The highest form of this system of cleintelism and patronage was for the relations of power. Antônio Carlos Magalhães, Senator and Governor of Bahia. who Traditionally in small amazonian communities -- both indigenous centralized all resource distribution through himself. he made himself so and caboclo -- health care was largely based on local resources and essential to the function of the state of Bahia that when he died, knowledge: some people knew how to find and prescribe medical herbs, leadership and civil society so fell apart that the homicide rate nearly some women worked as midwifes, and some people worked cures that doubled. (Ratton 2011). might be called "magic." Mothers and grandmothers were confident of According to a recent study, the public policy that has done most to weakening resource transfers in the Bolsa Família coronelismo is the Bolsa Família, simply because the money for the benefit is paid directly to mothers, without passing through state or municipal coffers. (Rego and Pinzani 2013) Federal Government According to Rego, the Bolsa Família is revolutionary because "The money comes in the name of the mother, with her password and she goes straight to the bank. She doesn't have to ask a favor of anyone. It's hugely different from if she had to ask the money from the mayor." (Rego 2013B). Rego adds that now, the women who get the Bolsa have the chance to give something to others, not simply to accept charity. This offers them a new dignity. Bolsa Família changed the flow of resources in Brazil. Eddies and turbulence continues to exist, but now they are millions of little whirlpools around each poor family -the mother, especially -- who can now pass Beneficiaries those resources on to small businesses, child care providers, farms… whomever she needs to buy from. In the economy of small towns
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their ability to cure most of the illnesses they would encounter in their families, knowledge that was passed from generation to generation and community to community, and small scale traders brought medicinal plants from one village to another. The arrival of the SUS, with modern and professional medicine, improved health care for many people and offered cures for many illnesses that used to end only in death. However, we must recognize that this new system also disrupted the traditional health system and the way that it distributed power and prestige in the communities. In the towns we studied, it became clear that most people now distinguish between modern and traditional illness, and they follow different paths to a cure depending on how they diagnose the problem. Turu Matis, a young Matis indian who dreams of studying medicine in the University, told us "For Matis illness, we have Matis cures, but for Nawa (White) illness, we have to find a Nawa cure." In this context, mothers try to distinguish traditional illnesses like the evil eye or fallen wind from modern illnesses like malaria and hepatitis. The first type of disease merits a trip to the rezador or traditional healer, while modern illnesses require a visit to the official medical system. As we see in Inara Nascimento's chapter in this book, it is very interesting to see how many rezadores see part of their role as refering sick children to Western doctors when they know the symptoms merit that kind of attention. We should also note that many mothers and fathers trust the rezadores much more than they do Western doctors, and will accept care from the formal system only when the rezador recommends it. At first glance, this double system of health care seems problematic. In the best of cases, it is redundant and inefficient, and in the worst case scenario, many mothers are taking their kids to witch doctors. The name of the SUS -- the Unique Health System -- expresses the modernist dream that one system will be the best solution to every problem. Counter-intuitively, I'd like to suggest that these redundancies and inefficiencies are one of the most important strengths of the Amazonian health system, and that any future reform has to preserve the
multiplicity of medical knowledges. I argue below that this double system advances the interests of democracy and public health. The utopian project of the SUS is a friction-free health system, where knowledge and resources go directly from the center to the patient, but we know that such a plan is unlikely to work in the Amazon. At each level of funds transfer, (Ministry, FUNASA, State, Municipality, DSEI, health post‌) small or large eddies will appear so that people can develop and show their power and importance. Even the famous and lauded social controls -- community health councils, oversight boards, etc -- can and should re-think the way these resources are used, createing new eddies and inefficiencies. Here, though, I'd like to think about how this vertical metaphor of resources that flow from BrasĂlia to the margins robs the people of their autonomy and pride. "He's the only one who understands health care," one mother told us about the (absent) doctor in town. Inara Nascimento found something similar in a series of women who said they would only accept care from "the doctor who commands others, not the doctor who is commanded." The Federal Government, proposing to break the cycle of corruption, has created a series of rules and processes to reduce the misuse of public funds, demanding well-written proposals, audits, and signatures from everyone involved. Sadly, however, with each new document to be filed, the presence of certain professionals becomes even more indespensible. It isn't easy to write proposals, develop budgets, account for spending, and bring together all of the documents demanded for a complete proposal. The number of people who can do such a thing in a small city is normally limited to one or two. Public servants who know how to "dribble through the bureaucracy" (to use the soccer metaphor current in Brazil) become more and more important with every new rule. Without them, the resources don't flow. In this way, measures to reduce corruption actually centralize power in the few people capable of dealing with the rules. And as these people are more and more important to making an essential system (like health care) function, it is less likely that
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capacity of local healers to deal with it. When we think of politics, this they will be audited and carefully overseen. attitude is also important: when ordinary people are able to resolve their Popular Education has dealt with the problem of knowledge own problems, they win the sense of pride and autonomy essential to the centralization well: after centuries in which formal education and political functioning of any democratic system. exclusion have taught the poor that they know nothing and can do nothing, Many current political analysts think of public policy as a series of Paulo Freire insisted that the first step is not to teach the poor person, but problems. The role of the state and the intellectual is to engineer the to show him that he already knows a lot. By reversing the hierarchies of easiest and most efficient solutions to these problems. This is the power, the excluded person learns that he knows more than he knew he technocratic dream: that everyone has already agreed on the goal of life, knew, and that he can teach. and the only real challenge is figuring out how to get there. In the terms I In the area of public health, this strategy could be powerful, have developed in this essay, this kind of a political philosophy want to especially in communities where traditional medical knowledge is not yet find the smoothest way for resources to flow from point A to point B. lost. Clearly, a poor woman living on the banks of the Rio Purus does not Here, however, I have know how to do brain surgery, tried to argue that technocratic but she does know how to treat Clearly, a poor woman living on the banks of solutions -- budget transfers, diarrhea and flu and she the Rio Purus does not know how to do brain RPFs, the Federal system -probably knows how to diagnose surgery, but she does know how to treat have political consequences. the symptoms of malaria better diarrhea and flu and she probably knows how to They can either promote or than many doctors. Far from diagnose the symptoms of malaria better than impede the democracy and any doctor or nurse, this many doctors. Far from any doctor or nurse, autonomy of small knowledge -- and the confidence this knowledge -- and the confidence to use it -- is communities at the most basic to use it -- is immensely immensely important for daily health care. It level. The current important for daily health care. doesn't matter how many times we reform health technocratic solution to the It doesn't matter how many care in Brazil: there will never be enough money problem of health care times we reform health care in to put a doctor in every tiny village on the banks delivery in the Amazon has Brazil: there will never be of the Rio Javari. At the end of the day, in these had perverse and poisonous enough money to put a doctor in remote places, people have to take responsibility results in indigenous and every tiny village on the banks of for their own health care, using the formal ribeirinho communities in the the Rio Javari. At the end of the health system when the problem goes beyond the Amazon, promoting an day, in these remote places, capacity of local healers to deal with it. authoritarian and corrupt local people have to take responsibility political system. for their own health care, using The proposals that we the formal health system when include at the end of this book the problem goes beyond the
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deal with may problems and try to strengthen many different actors, but they have one common theme: the awareness that no resource arrives in a community without political consequences. Those who can manage and administer these resources will gain power and personhood, which will in turn cause resentment and transform the political system. Before making any kind of political reform, it is essential to evaluate if these changes will promote autonomy and popular democratic participation or -- as has been the case until now -if these resources will actually reduce the alternatives and power of poor people -- be they indigenous, caboclo, black, or anyone else -- living along the rivers and in the forests of the Amazon.
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0 1 r e t p hC a
Proposals for action
B
efore we began the research that would lead to this book, almost all of the people on the research team had extremely low expectation for what we would find in the rural Amazon. We knew of the horrible health conditions in the Vale do Javari and high level of infant mortality there; we had heard stories of the Black Fever of Lรกbrea (later renamed Hepatitis Delta); we had read of the political problems with the implementation of the DSEIs. For this reason, the most surprising fact about this research is that, in spite of the political catastrophe that is health care in the state, a large number of people in the rural Amazon are able to shore together reasonable health care from the ruins they find around them. This "success", if that is the right term, is the result of the creativity and persistence of families who want their kids to be healthy, and not because of the formal health system. The proposals we present here are not a prescription for health care in the Amazon, but instead a point of departure for a future conversation about how to address health care needs in an immense state with huge challenges around transport, professional training, communications, and human resources. We begin with "what already works", taking advantage of local capacities and reforming public policies that have emerged from good ideas, but that have not yet had good results. Over the course of the research, we found four areas where a directed investment can leverage major changes. We divide our proposals into the following areas. 1. Direct health care and the health agent 2. Reforming funding and administration
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3. Water and Sewage 4. Direct Action
eH althcare
We separate our various suggestions for action based on these categories.
Direct Healthcare and the Health Agent
Training the health team
The role of the health agent is one of the most important developments in providing healthcare to rural areas of the Amazon. When these agents know what to do and do it well, their work makes a huge difference in the lives of people in the communities they serve. Unfortunately, it is generally a wasted resource: in many municipalities, the health agent is a reward offered by new mayors to their political supporters, and seldom are agents properly trained. After four years, new agents who dedicated themselves to the work and finally understand what they are doing, will be fired by the newly elected mayor from a rival party. In other proposals to follow, we will look at ways to overcome the problem of these mass firings, but here we want to look at training health agents. Less contemplated in public policy, but equally important, is the training of other members of the health team: doctors, nurses, and administrators. While it is probable that health agents need to learn more about anatomy and pharmacology, trained medical professionals certainly need to know more about local culture, local ideas of health and illness, and the way that they treat their illnesses. At the end of the 1990s, an extremely productive and successful
project among the Yanomami trained complete health teams through the popular education methods of Paulo Freire. The project opened conversation and debate about how everyone could learn from each other: not just the agent from the doctors, but also the doctors from the agent, and everyone from the midwives and shamans in the community. As is common in the north of Brazil, this experiment was abandoned by subsequent administrations, but the people involved in it still work in the SUS and in universities around the region. This experience could be reactivated and adapted for other areas of the Amazon. Training like this can transform the work of agents, doctors, and nurses all together, creating a dialogue among different forms of knowledge and certainly having a large impact on health care for children. A1. Differentiated training for medical professionals. Though the Federal Mais MĂŠdicos project, which brings international doctors to work in underserved areas of the country, has been roundly (and probably unjustly) criticized by the medical establishment, it has opened an important debate on the poor preparation that most Brazilian doctors have to work in areas like those we researched. Doctors and nurses with hopes to become rich without getting their hands dirty will have no chance in the rural Amazon. It is necessary to build both the desire to work in remote communities and the knowledge that would allow them to do their job and to learn from the diverse groups that live there. Disciplines like health anthropology and popular health are essential measures to undermine the mystique of Western medicine and to understand that other forms of treatment can also work. These ideas can also show the wealth of local knowledge and practice. The best doctors who work in these regions know how to listen to and respect; when they talk, it is not to destroy the traditional knowledge of rural people, but to find a common ground for building new ideas and practices. We propose, then, an investment in these professionals while they are still medical and nursing students, so that they can understand and act in these areas of Brazil. A technical school
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associated with the SUS might also be able to address some of these problems, training new doctors in the region and also offering Associates Degrees to health agents. We spoke with many rural and indigenous youth who expressed their desire to be doctors or nurses, and this space might be a good transition into a formal education in these fields.
Digital "Where there is no Doctor" The book Where there is no Doctor has been an essential tool for travelers, people working in remote areas, and health agents around the world. In the Amazon, we noticed that health agents always carry their smartphones with them -- even if there is no cell signal -- but they almost never carry a book. An app for cell phones, with clear instructions for nondoctors to deal with common problems faced in the Amazon, could provided an important crutch for health agents in the field. One could develop this app in many ways, but we believe that in the Amazon, where people face many special and unusual health problems, the following idea might be productive. A small group composed of an experienced health team (doctor, nurse, health agent) and a film team would go together to an extremely remote community. The group would deal with the problems it found and film the treatment for each health issue. In general, these problems will be the same ones that health agents face in their day to day work, so after organizing them by symptoms, we could develop an index so that health agents could look the proper treatment for many different problems. When a health agent encounters a problem that he or she has not seen before, s/he has the app as a reference: with a couple of finger taps, one would have access to information about how to treat diarrhea, how to bandage a wound, and when it is necessary to get a patient to the hospital
urgently. Given that phone signals are weak or non-existent in most of the Amazon, it would be important that this app be self contained, without needing a signal to function. Though agents could use their own smartphones to host the app, it might also be interesting to collaborate with one of the international tech companies that work in the Zona Franca de Manaus: Samsung, Nokia, and Foxconn (which makes iPhones for Apple) all have factories in the Amazon and might see this as a form of social responsibility or an interesting marketing opportunity.
Rezador Networks
In all of the communities where we worked, traditional doctors -rezadors, shamans, midwives, healers, and older men and women who know herbs and baths -- play an important role in day to day health care. Medical and anthropological literature recognizes that their cures work to treat many problems that western medicine also addresses -- diarrhea, colds, infections -- but they also treat many local ills that university trained doctors will not take seriously but which worry mothers and fathers greatly: the evil eye, quebrante, fallen wind, fallen arch, the fat eye. What we had not expected was the way these traditional doctors also referred patients to the formal medical system. Rezadors can cure many things, but the good ones know the limits of their capacity: they know when it is problem they can't treat. In those cases, they pass the patient on to university trained doctors. What we see here is a kind of autochthonous triage started by the mothers of ill children, and it is important not to institutionalize the process. We don't believe that having a rezador inside a health center or hospital will work. However, it would be very useful to train them to better recognize illnesses that the formal health care system treats well: to distinguish, for instance, between the vomit and fever of malaria and the same symptoms for
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quebrante. If rezadors understand the health system better, they will also be able to orient mothers and fathers better about where to go to deal with specific problems. In Atalaia do Norte, we saw that families diagnose almost all cases of diarrhea as quebrante and take the child to the rezador. In many cases, the treatment offered by the rezador works: in addition to prayer and attention, he will also suggest clear water, rehydration salts, more time to nurse. However, it is also important to teach rezadors that other problems, like contaminated water, can also cause diarrhea so that they can pass on this knowledge to mothers. They could also be trained to recognize life threatening diarrhea that merits a direct trip to the hospital. Distinguishing diagnoses around malaria and hepatitis could also be very useful for making sure that children get the right care. Doctors and nurses also need to understand the importance of rezadors and other traditional doctors in the day-to day-health care of poor and rural people. When a Matis child arrives at the hospital with skin burned from frog poison, these burns don't mean abuse: it is a local cure building on homeopathic ideas of health, as we see well in chapter one of this book. When people don't have sulfametoxazol, grandmothers know that tea made from guava leaf helps to stop diarrhea, and doctors should know that. And finally, the people who work at the front desk of the hospital need to know that when someone says, "The rezador told me it is urgent," it probably is a real emergency. Training and seminars could be extremely useful to bring together health professionals from both sides of the formal-traditional divide.
Receiving Center
In the three cities where we researched, we observed a complex phenomenon: at the beginning of the month, many indigenous and ribeirinho families arrived in town to get money from the Bolsa Família.
They spend the money to pay debts, to supply food and goods for the family… and then have no money to buy gasoline to return home. They wait for a month in town -- in Lábrea, living in the homes of family in Terra Solidária; in Atalaia, sleeping in their canoes -- and then after getting the next benefit, return home. The consequences for health, for education, for planting and harvesting, for fishing, and simply for the dignity of the families, are clear. People of good will in the towns seek ways so that these rural families need not suffer in this way. However, we should remember that one of the most difficult challenges of health care -- especially preventative health care -- in the Amazon is the simple movement of people. How can the doctor, nurse, or health agent get to the rural child? Until now, almost every proposal has been based on the movement of the health professional, but with the Bolsa Família, suddenly these rural families are coming to town every three months. They are already in the city, close to university educated health professionals, so why not take advantage of the fact instead of combatting it? A Bolsa Famíla Receiving Center could sit next to the port of these rural towns, where families arrive before walking to the bank to get their money from the ATM. At these centers, a doctor or nurse could see the children as they come, focussing especially on preventative check-ups and health education, two aspects of the health care system that have been weak until now. Other professionals or volunteers could orient mothers on the use of the money from the Bolsa, helping them to work out a budget that would leave enough money top buy gasoline to get back home. They could also teach consumers' rights and help mothers suffering the abuses of unscrupulous store owners who charge usury, demand possession of the Bolsa Card as collateral, or otherwise take advantage of rural women who have money for the first time. Case managers could also help with other issues relating to the government, from getting documents for children to legal and land tenure issues. A tutor could help older children with homework or teach lessons that students miss because of these long family
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trips to town. Little kids could play in the space. Such a project could be financed by the state or federal government, or perhaps a pilot could be done with foundation or private funds. However, considering the problems we have documented when federal funds are passed through municipal coffers (where it is almost always abused and detoured to private ends), it would be very important that local government not administer such a program.
Endemic Disease Agents Malaria is a plague in the rural Amazon. During our visit to the village of São Paulo in the Vale do Javari, ten percent of the population had malaria at that moment. In São Paulo, along the Purus, more than 20 people tested positive for Viivax Malaria in the month prior to our visit. Other rural communities will tell similar stories. Though local people do not fear malaria as a life threatening illness, they complain of the suffering, the lost time in bed -- when they could be working or being with their families -- and the delays in treatment. For instance, in the Upper Javari, if a person has malaria symptoms, a health agent will first take a blood test. Next, he has to wait for a canoe heading downriver. The canoe may take seven to fifteens days to arrive, depending on the strength of the motor, and then the lab may do the test quickly… or not. Then, another 10 to 20 days to return up the river. Finally, seven days of treatment. It isn't unusual to lose 50 days between the first symptoms of malaria and the cure, all of this time suffering, unable to do anything, and worried about possible death. And many people go through this every year -- or more. If we look instead at São Paulo, where a volunteer serves as the Endemic Disease Agent, everything is different. A sick person comes to the agent (or the agent gets to him: in the case of São Paulo, Seu Zé is both the Endemic Disease Agent and the school bus driver, so he sees everyone every
day), pricks a finger for blood, and in 15 minutes knows the diagnosis. Seu Zé has the medicine on site and a clear chart for dosing, so the person leaves with medicine already starting to work. In four days the person will be back on his feet, and done with the medicine in seven. The difference for quality of life and for people's work and economic well being is immense. It also costs much less, because there is no need to spend excessive money on gas to get the tests back and forth. The Agent can also be a volunteer. Expansion of this program is essential.
Comunicação com Agentes de saúde
The movement of health teams in the interior of the Amazon isn't the only hard thing: communication also is difficult or impossible. Though some communities have pay phones with satellite connections and others have radio telephones, we heard many stories of broken or unserviced equipment. There is little money budgeted for repairs, and few people know how to fix technology. By improving communications between remote health agents and doctors in health centers, the investment could reduce the need to take sick people to hospitals, and take the responsibility for such a decision out of the hands of health agents, who often feel incapable of deciding. Contact with a doctor would also allow remote prescriptions, instructions of how to deal with unexpected problems, support in crisis, and the possibility to identify disease outbreaks quickly. Investment to repair old technology -- and to teach local people how to do it themselves -- would be possible and useful, but it is also worthwhile to look at new, less expensive, and less fragile technology. The Delone Inreach SE2, to take just one example, allows one to send and receive text messages through satellite telephony, but with a much lower cost than satphones ($10 per month, plus $300 for the equipment).
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y c i l o P c i l b u P g n i t n e m e l p Im
Implementing Public Policy
In the chapter "Data and Detours," Georgia Silva shows clearly that both Federal and State policy around children's health emerge from good ideas and progressive principles. The state has thought about and invested in public health in the region. However, all of these good ideas for policy get shipwrecked on the shoals of local politics, as Kurt Shaw shows in Chapter 9. To get good health care to children, we must address administration.
Points of Health As we saw in Chapter 9, the federalist system of resource transfers from the central government to municipalities has largely been hijacked by coronelismo: avery actor in the system wants to create a little eddie around himself to concentrate power and status. The Bolsa Família has done much to undermine this logic at the individual level, and at the level of organizations and institutions, the Points of Culture project has had the same impact. The Points of Culture pass resources and recognition directly to the people and groups who make culture, skipping over traditional transfers of power and domination. We suggest Points of Health to mimic in the health field what the Points of Culture did for the arts. Local health actors could propose direct projects of the most varied types, as long as they address the needs of underserved populations. A Point could be created by a health team of a doctor, nurse, and several health agents, but it could also be a lone agent or a shaman recognized as an essential resource by his tribe. Clearly, the resources available to each project would depend on the capacity of the people involved, but a doctor, a midwife, and a rezador could all get the same
symbolic recognition. This idea requires extensive development before being proposed formally to the federal government: there are political questions, accounting and auditing issues, and concerns around evaluation to be addressed. Nonetheless, we believe that the idea of Points of Health could be a very useful frame to re-think the current problems of health administration in Brazil. It could never take the place of the current system, but it could fill in lacunae and gaps where the the system has not been able to function.
Labor Legislation
In the previous chapters, we have often denounced the politically motivated mass firings of health agents and health professionals by newly installed mayors. They will then fill these jobs with political supporters, friends, and family, under the vague but official labor category of "Trusted Position" (Cargo de Confiança). In this situation, there are no formal job searches, official employment, or workers' rights, so the few doctors who were even willing to work in such remote places soon get frustrated and leave. Many mayors make a big deal of the money they spend to hire a doctor from São Paulo or Rio de Janeiro, but then they never sign a contract with the doctor. After a couple of months, the salary comes late. Then the salary drops. Then it never comes. The doctor returns to São Paulo bitter and angry. Though we have diagnosed the illness in the health system and have found the "vector" -- as they say in malaria prevention -- we do not feel capable of recommending the proper treatment for the health system. Administration and funds transfers are complicated in Brazil, and changes in them demand a care and a clear understanding of the political demands of the situation.
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As such, we propose a conference on administration and funds transfers in Amazonas, where academics, NGO personnel, and public policy professionals could examine the problem and propose new laws and policies to overcome the issue. The conference could take as its goal the production of a legislative agenda of public policy and labor law changes, which could then be submitted directly to the House and Senate of the State of Amazonas.
Ombudsman and Routes for Whistleblowers
Many people who work in the health care system in the municipalities understand where and why it has failed. However, they are terrified of talking, knowing that blowing the whistle will get them fired, destroy their relationships with power brokers or -- in southern Amazonas -- even get them killed. Our research did not have the support of the government not powerful institutions, but government employees would only agree to speak with us after a guarantee of anonymity. There must be a way, whether inside the state or outside it, for people to denounce corruption and abuse of power, and where people know that their identity will not be exposed -- and that their accusations will get attention. An ombudsman inside the Health Ministry is a possibility, but also a parallel institution monitored by the Federal Police and the MinistĂŠrio PĂşblico: Wikileaks is an interesting model here.
Radio Program People who did not depend on the state for their salary were not as fearful of telling us about problems in the health care system, but they did doubt whether their criticism would have any effect. In the rural Amazon, many families don't have a TV; if they do, they often only turn on the generator to make it work for an hour at night so they can watch a soap opera. In this context, the radio -- especially the RĂĄdio Cultura station -- is a privileged medium to get news and understand what is going on in the rest of the Amazon. People listen to the radio a lot, and then talk about what they hear, especially when the news has to do with people like them. A decentralized radio program could be an interesting space for denouncing problems in the health care system and lauding successes. A radio program could include telephone calls from people along the rivers, short stories by young journalists (several groups are funded by UNICEF), and some professional reporting. Denouncing problems will win attention from the government and the police, but it should also incite social shame. Compliments for doctors and health agents who are doing their jobs well could also insulate them from bureaucratic revenge, as well as stimulating best practices. The program could also include educational spots talking about symptoms and cures, where to go for help, and other health issues. We would suggest a comedy program, since people in the rural Amazon pride themselves on an excellent sense of humor and because it would be a way to reduce the weight of bad news. Humor also allows one to say hard truths in less painful ways and to shame corrupt and incompetent leaders. It should create new expectations for competence, now that people understand what is possible and how they can demand better. There might also be a short radio soap opera that would play a role in the program, since people in the rural Amazon love the genre. If the program were well run,
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we believe that it could have a major impact on education, health, and the perception of indigenous and ribeirinho people. The program could take up certain issues in different weeks, such as STDs, water quality, health programs, services the federal government finances that don't make it to you, etc.
On the Boats
Ribeirinhos, indians, and people from quilombos in the rural Amazon inevitably come together on the riverboats that carry people and cargo through the state. In the seven days that it takes to get from Manaus to Lábrea or Atalaia, people pass the time talking, watching TV, gossipping, and complaining about politics. When they arrive at their destination, they share what they have learned with friends, family, and neighbors. The riverboat isn't just a medium of transport: it is a medium of communication. The TV and DVD are always on in the boats, and people come together to watch movies or TV shows. A soap opera produced for the medium, something that would last only 15 minutes to fill the intervals between the Hollywood and Hong Kong films one sees on the boats, would be an interesting way to convey new values and knowledge about health. Incorporating the same themes in the radio soap opera (above) would make for an interesting synergy.
Public and Press Relations
When local news becomes national or international, bureaucrats and public servant start to pay attention and do something. This happened with street children after the massacre at the Candelária church, and it happens today with international news about violence in the favelas. Though a contract with a Public Relations firm might seem excessive, it could serve as a lever to force implementation of many new public policies.
r e w e S aW ter and
Water and Sewer
In every part of Amazonas, whether urban or rural, drinking water is a problem. Excrement is a problem. Diarrhea was the first or second most mentioned illness in every municipality surveyed, and parasites and hepatitis are chronic problems in the region. Nonetheless, most rural people don't even understand the connection between contaminated water and diarrhea. In order to offer long term solutions around child health in the Amazon, we have to address the issue of water.
Technological Resources Complaining about water in the Amazon is nothing new: almost every text and study on health in the Amazon beats again on the same key, and Atalaia do Norte has been the site of dozens of theses, dissertations, and experiments on clean water. The problem, however, continues. We believe that the basic problem lies in the fact that the Amazon is so diverse that no single, simple solution will work for the whole state… and governments prefer single, simple solutions. In some cases, a well works in a rural community: in the village of Areal in Santa Isabel, a well works well and helps to avoid many health problems. Along the Purus, however, people live on a floodplain, so wells only bring up dirty water. Some families have the discipline to clean their roofs and rain barrels, allowing them to drink clean rainwater, but other families can't organize themselves this way. Mothers in São Paulo along the Rio Purus put hypocloride in the water they give to their children, but mothers in Atalaia find the stuff distasteful and don't use it. If health agents were well trained, they could offer a multiplicity of
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solutions. Each kind of water treatment and purification system should be seen as a tllo in a big box, and different contexts demand different tools. A health agent who understands these tools and knows the families in the community where she works can advise each family on what might be best for them, and help them to build what they need. This "solution" demands training, intelligence, and flexibility (and flexible funding!), but it might be the only way to address this diverse problem, especially for children whose immune systems are still developing.
Investimento PĂşblico Though it is no solution for isolated villages and homesteads, small towns can and must learn to treat water.
Educação
Few people we interviewed were able to connect contaminated water and diarrhea. We believe there are several reasons for not putting two and two together: i. Water is essential to life, and in the Amazon, you simply can't find potable water. Knowing that it is impossible to overcome the problem, people have to continue believing that there is no problem. Rosilene Pereira points out, for instance, that if she continued to ask questions about water, almost everyone recognized that it could cause diarrhea. They had learned that fact at one point. However, without a way to get clean water, this knowledge could never become a part of their active practice. ii. The educational campaigns that teach people about clean water don't match the world view of Amazonian people.
We think that several solutions presented here may help people see that there are possible ways to get clean water. Overcoming the second problem demands an ideological shift in education, one to which perhaps the radio and boat-based soap operas might be able to contribute. Education about water needs to be funny and needs to speak the language of health that people use in the rural Amazon. The film "Written in Sand", presented as part of the DVD for this baseline, tells the story of a tortoise who hunts for a tapir, using its scat to track it. The film is light and funny, but it tells something essential about the way that the Nadeb people think about excrement. A project of children's narratives about poop might be an excellent way for people to think how they relate to their excrement and what that means for water. The stories should also take on damaging myths -- like the idea that water is pure just because it comes out of the faucet -- head on. These narratives could be animated as cartoons and shown as a part of the riverboats project, turned into children's theater, or made into children's books. A collaboration with the school system might be very productive as a part of these educational efforts. In many villages, the health agent and the teacher are the only representatives of the government: they know each other and often work together in social or indigenous movements. Strangely, however, health agents and teachers seldom collaborate in the communities where they live and work. A series of books and videos on health and water could be used in the classroom, and then health agents could do workshops in the fields or the river. Such a collaboration could teach about health at the same time that it promotes a more collaborative and protagonistic form of education and health care. Here, we should also touch on linguistic concerns. These materials should be available not only in native language but with a local way of thinking. Developing these materials will have little impact if they don't interact with the community's know-how. Here, the methods of Paulo Freire would be very important: producing these materials with the people who live
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n o i t c iD rect A
along the rivers, and not for them.
Durable Food Production
Direct Action
Several issues can be addressed directly in river communities, working with health agents or independently. These direct actions should be done in conjunction with work training health agents, treating water, etc.
Parasite Treatment All parents know about intestinal parasites in children. Kids play, they put dirt in their mouths. They learn the tastes and consistencies of the world and also develop a strong immune system. They swim and splash, which is a form of play and a way to understand different elements. Both water and dirt, however, mean parasites. Regular treatment for parasites could be very important to improve nutrition and digestive health. Among the Kanamari, for instance, several years ago many children died from malnutrition: this problem was not caused by lack of food, but by parasites stealing the children's nutrients before they were digested. Marcos Pellegrini, a doctor who had worked for a long time among the Yanomami (as well as advising this project) says that one of the most productive things he ever did for the community was parasite treatment. These small measures can have a big impact.
Most groups that live along the rivers use manioc flour as a year-round staple. Manioc is grown in the summer and then turned into flour, which lasts the whole year round. Though this food is a good complement to fish and provides enough calories, it lacks many important vitamins and minerals. By working with local agricultural specialists and nutritionists, it would be valuable to find other foods that could be preserved from summer to summer. Nuts are a good alternative, as well some fruits and greens. The Pastoral da Saúde and Pastoral da Criança have developed a flour commonly called farelo that mixes a number of different grains. When added to the diet of small children, it works as a good supplement. Similar research could do much to diversify food supplies for children along the rivers of the Amazon.
Research on Local Medicine
This Baseline research did not propose to understand or evaluate local medical treatments for diarrhea, vomit, fever, and many other problems faced on a day-to-day basis -- let alone the regionally specific ills of quebrante, fallen wind, and the evil eye. Academic researchers, medical pirates, and teams from Fiocruz and Embraba have made it clear that many herbal remedies from the Amazon are extremely powerful. A formal study of the efficacy of these local resources and treatments could teach us where ribeirinho and indigenous medical systems really need the supplement of Western medical knowledge, so as to better direct resources. This kind of research can also be an important aspect of campaigns to teach university educated medical professionals of the importance and validity of local medical practices.
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Biographies of the research team
s e i h p a r g o i B
Rita de Cรกcia Oenning da Silva, Helena Iara da Silva Shaw, Kurt Shaw, Willas Dias da Costa, Rosilene Fonseca Pereira, Inara Nascimento Tavares, Deise Lucy Oliviera Montardo, Georgia Silva
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Rita de C谩cia Oenning da Silva was born to a family of displaced rural laborers in the South of Brazil; her parents had little to give their children materially, but inculcated the value of education and learning. Curious to know hoe light bulbs functioned, she asked intense questions of science teachers, questions that would eventually take her to an MS in Chemistry from the UFSC, where she also worked on projects to bring science, art, and popular education together. In 1994, she also earned a diploma in theater, and worked for several years as a professional actress. In 1990, da Silva helped to found the NGO CECCA, where she worked as an art educator in photography, theater, and perception. Work in excluded populations drew her interest to anthropology, a field in which she finished an MA in 1998 with a thesis on children who lived on the streets of Florian贸polis and their families. Since 1999, she has been a professor of anthropology at various universities, and was a visiting scholar at the University of New Mexico in 2005 and won a prestigious Wenner-Gren anthropology grant in 2006 to complete her PhD research on child street artists in Recife. After finishing her doctorate, she joined Kurt Shaw as co-director of Shine a Light, where they work with art and social change for marginalized children and teenagers in many different countries. In 2012, she began as post-doctoral fellowship through the Brazilian National Science Foundation to study art and performance among migrant indigenous children in towns and cities of the Amazon, a project that opened the possibility of this Baseline study. She is married to Kurt Shaw; their three year old daughter, Helena, accompanies them on their research. They live in Florian贸polis in the south of Brazil. Kurt Shaw was born in an academic family in the United States, where one of his father's roles was to recruit native american and international students. He grew up largely in a small rural town, but in the mid 1980s, the church he attended elected to give sanctuary to family of Salvadoran refugees. Church members stood in the church door 24 hours a day to impede government and migration officials who wanted to expel the family because of Ronald Reagan's support for the right-wing Salvadoran government. This experience inspired a fascination for Latin America and an understanding that even small groups could impact the foreign policy of the United States. During college at Williams, Shaw did his junior year abroad in Chile, and then graduated with a degree in philosophy; he then won a Fulbright to study popular and revolutionary groups in Central America and Colombia. After some time at a Washington think-tank -- working on governance issues in Chile and US-Cuba relations -- he began post-graduate work at Harvard. Uninspired by the intellectual climate there, he began to work with street children first in New Mexico and then in New York City. In 1997, he founded Shine a Light in order to help small NGOs working with street children to share their knowledge and experiences. In collaboration with organizations in almost a dozen countries, he developed more than 20 Digital Workshops to teach best practices with street kids, child soldiers, indigenous children, and child labor. Among his books are Agony Street (on street children and politics), Theater of War, Cinema of Peace (on making movies with ex-child soldiers) and Toward a General Theory of the Street. He is married to Rita da Silva, with whom he now directs Shine a Light. They have a three year old daughter, Helena Iara. Helena Iara da Silva Shaw, at three years old, has already studied drug gangs in Recife, run-away slave colonies in the south of Brazil, and urban indigenous children along the Rio Negro. Her presence in the field always inspired curiosity and interest from children and their parents, and her ideas have often helped her parents understand art and music on the margins of society. Helena loves music and drawing, and often will set up a tripod in order "to make a movie about Baniwa women."
Deise Lucy Oliveira Montardo lived for many years in Florianópolis, where she studied social sciences and worked as a researcher at the museum of the UFSC. She went on to do a Masters in Archeology at the Catholic University of Rio Grande do Sul, where she studied indigenous funerary remains. During that time, she also studied theater and music and became passionate about modern dance. Montardo studied guarani music for her doctorate, which eventually became the critically acclaimed book "Through the Mbaraka: Guarani music, dance, and shamanism." Since 2006 she has been a professor at the Federal University of Manaus where she teaches, advices doctoral students, and organizes the Nucleus on Guarani Studies. She is the Amazon coordinator for the Brasil Plural national think-tank.
Inara Nasciemento was born in Manaus to a family whose ancestors came from the whole world, including Japan and indigenous tribes of the Amazon. She first studied social sciences at the UFAM and then did an MA in Anthropology, which helped her to gain new perspectives on the rivers and jungles of the Amazon, as well as its political life and indigenous groups. Since 2011, she has lived in Benjamim Constant in the Upper Solimões River, where she has been a visiting professor at the local campus of the UFAM. She organized the Kokama Linguistic and Cultural program in collaboration with the UnB (Brasilíia), an effort to bring Kokama indians into the university to study themselves and the world. Inara has worked closely with the indigenous movement of the region, an experience that has oriented her academic research and her politics.
Rosilene Fonseca Pereira's family is of mixed Paratapiua and Arapaço descent; she was born in Santa Isabel do Rio Negro. From the time their children were very young her parents saw education as the route to social ascension, so from primary school on, they sent Pereira to boarding schools run by nuns, first in Santa Isabel and then in São Gabriel. It was a terribly difficult time for her, but her education was good, and daily interaction with whites and nuns taught her what it meant to be an indian in Brazil. When she was sixteen, soon after graduating early from hight school, Pereira joined the young leaders of the newly formed Federation of Indigenous Organizations of the Rio Negro (FOIRN), where, in 2000, she became the first woman elected as president. She created the first department of indigenous women in the organization and developed new ways to valorize their work both economically and politically., including the founding of the Wariró art center and gallery. She did her MA in anthropology at the UFAM, where she studied care for an narratives about children in different moments of Waikhana history. She financed this study with a Food Foundation Fellowship, important for her personal and professional development.
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Willas Dias da Costa was born to a poor family in the Amazon; he first studied to be a high school teacher, where he encountered the diversity of indigenous and other ethnic groups. He got his BS in education from the UFAM and worked for many years as a teacher and high school principal, before moving on to work in the lower Purus River, where he found himself fascinated by the cultures of the south of Amazonas. With this new interest in mind, da Costa returned to Manaus to study anthropology at the UFAM, where he joined the Purus team of the New Cartography of the Amazon. He is currently a doctoral student at the UFAM, where he studies power and labor relations in rural production in LĂĄbrea.
Georgia Silva has always been surrounded by traditional medicine. Her extended family in ItajaĂ, Santa Catarina, includes many rezadors and blessers, and she used this experience as a jumping board for an MA studying traditional medical practices in Brazil's northeast. For the last eight years, she has worked in non-governmental and governmental organizations in the Amazon, facilitating communication and dialogue between the formal medical system and traditional ways of healing. Born in the south, trained in the northeast, and with many years of work in the Amazon behind her, Silva has recently been asking, "Where now?"
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