This ethnographic study of a low-income neighborhood in the northeastern state of Ceará analyzes the complicated and compromised realities of Brazil’s universal health care system, pointing the way toward more successful planning of future reforms.
Series: Louann Atkins Temple Women and Culture Endowment, Book Thirty-nine
In 1988, a new health care system, the Sistema Único de Saúde (Unified Health Care System or SUS) was formally established in Brazil. The system was intended, among other goals, to provide universal access to health care services and to redefine health as a citizen’s right and a duty of the state. A Right to Health explores how these goals have unfolded within an urban peripheral community located on the edges of the northeastern city of Fortaleza. Focusing on the decade 1998–2008 and the impact of health care reforms on one low-income neighborhood, Jessica Jerome documents the tensions that arose between the ideals of the reforms and their entanglement with pervasive socioeconomic inequality, neoliberal economic policy, and generational tension with the community.
Using ethnographic and historical research, the book traces the history of political activism in the community, showing that, since the community’s formation in the early 1930s, residents have consistently fought for health care services. In so doing, Jerome develops a multilayered portrait of urban peripheral life and suggests that the notion of health care as a right of each citizen plays a major role not only in the way in which health care is allocated, but, perhaps more importantly, in how health care is understood and experienced.
- Chapter 1. Pirambu: Historical and Contemporary Accounts of Citizenship in a Favela
- Chapter 2. A History of Welfare and the Poor in Ceará
- Chapter 3. Democratizing Health Care: Health Councils in Pirambu
- Chapter 4. Prescribing Knowledge: Farmácia Viva and the Rationalization of Traditional Medicine
- Chapter 5. Favors, Rights, and the Management of Illness
- Chapter 6. Public and Private Medical Care for a New Generation in Pirambu
- Conclusion: A Politics of Health
In 1988 Brazil adopted a new constitution that defined health care as a right of all citizens and the responsibility of the state. It further established a new health care system, the Sistema Único de Saúde (SUS, Unified Health Care System), which dramatically transformed all aspects of the way health care was practiced, from the way funding was allocated to the categories of citizens to whom medical care was extended to the very way that health itself was imagined.
Brazil’s transformation of its health care system was a profoundly radical step, not just in the context of the country’s emergence from twenty years of military dictatorship but also in a global context of widespread reevaluation of the welfare state leading to a shift to privatized models of health care throughout Latin America and the world.1 As such, Brazil’s reforms have been the subject of extensive analysis and political debate, and its consequences have been measured and assessed.2 What has received less attention are the insights that health care reform offers into more general questions about the nature of universal rights, social belonging, and citizenship in the everyday lives of individuals, families, and communities.
This book is an ethnography of health care reform in the state of Ceará, a midsize state in Northeast Brazil. In it I investigate the meanings and possibilities of new ideologies and practices of health care. I focus on a population for whom the reforms were intended to matter most: the residents of Brazil’s peripheral communities,3 in this case, on the margins of Fortaleza, Ceará’s capital city. The reforms associated with the SUS have increased access to medical care and technologies for low-income residents in Fortaleza and elsewhere in Brazil (Victora 2011); they have promoted new models of citizen participation in the formulation of health care policy (Coelho 2007, Cornwall 2007). Yet these reforms emerged in the context of neoliberal economic policies that encouraged the ongoing privatization of health care and consequently weakened the country’s already fragile political culture of civil rights (Caldeira and Holston 1999, Holston 2008, Scheper-Hughes 2006).4 At the local level, the SUS reforms have become entangled with residents’ visions of community activism and their future-oriented aspirations, both of which have grown out of experiences of exclusion from political and economic structures.
The complex relationship between a formal right to health and the ways this right is experienced within a community became evident early on in my fieldwork. Some of these complexities are encapsulated in the following story. Several months after arriving in Pirambu, the community where I lived and conducted most of my fieldwork, an older man named Benito Antonelli came to stay with my next-door neighbor Elizabete. Benito was from Crato, a small town in the far south of the state of Ceará. Elizabete was his second cousin. Some time prior to Benito’s arrival, a young schoolteacher in Crato who knew Benito wrote to Elizabete on his behalf and asked if he might stay with her in Pirambu for a short time while he was seeking medical treatment in Fortaleza. The city, she wrote, would have sophisticated medical care accessible even to “pessoas bem pobres” (very poor people) like Benito. Elizabete agreed to host him, and Benito arrived shortly thereafter.
When Benito arrived he was already in poor health. He had what he said was an ear infection and had waited almost two months at home in Crato before deciding to do anything about it. The day after his arrival, Elizabete took him to the nearest primary care clinic, where a nurse’s assistant carefully washed his ear, covered it with pads of gauze and adhesive tape, and recommended aspirin for the pain. That was the first medical attention his ear had received. He was instructed to go to a local medical clinic to be seen by a doctor.
Several days later Elizabete and I accompanied Benito to the clinic a short bus ride away from the neighborhood. We took a number from the receptionist and sat in the hot, open-air waiting room for most of the morning. While we waited, Elizabete marveled at the clinic, which apparently had been built only five years earlier. She explained, “When I first arrived in Fortaleza [in 1961] we were just starting to get [public] health clinics in the favela. We protested a lot back then because before that there was nothing. You might as well have been in the interior.”5 As I was to learn in the course of our many subsequent conversations, she was an active participant in Pirambu’s social movements during the early 1960s; she was also one of the few residents I met who explicitly linked the construction of the new health clinic to the Sistema Único de Saúde.
By the time Benito’s number was called that morning, the doctor had left for the day, and we were instructed to return to the clinic the next day. It took several more visits before Benito was finally seen, by which point he was told that his case looked “very serious and complicated.” He would need to see a specialist and was given a referral to a doctor at one of the city’s main hospitals. The clinic’s doctor gave Benito a prescription for a pain reliever that was supposed to be available for free in the clinic’s pharmacy. Elizabete didn’t bother to stop, however, as she assured me the pharmacy’s shelves were almost always empty.
That evening Elizabete narrated the day’s events to her twenty-twoyear-old daughter, Fabiana. She asked Fabiana to call her boyfriend, who worked as a driver for a family she described as “gente boa” (good people); the man was an administrator at the hospital to which Benito had been referred. “Maybe he’d find a way to get Benito in a little earlier,” Elizabete reasoned. “He can’t wait here in Fortaleza for too long, and his ear is getting worse.” The call was apparently made in the next several days and an appointment set for Benito to go to the hospital the following week. I couldn’t accompany him on that visit, but Elizabete said later that the doctor suspected a cancerous tumor and wanted to do blood tests and an MRI. More appointments were made for the next few weeks, but Benito would have to wait two months for the MRI exam.
One evening Fabiana began complaining to me about the public health system through which Benito was getting care. “It’s so typical,” she said, “all this waiting and the incompetent doctors. Why can’t they just tell him what’s wrong?” She continued, “Look, it [his medical care] has cara de favela.” This phrase, literally “face of a favela,” was one I was to hear often during repeated field visits to Pirambu to describe anything that was particularly ineffectual or dilapidated.
In the fifth week of his visit Benito turned visibly worse, becoming unable to swallow anything and complaining of severe pain. Although he had not yet completed any of the medical tests advised by the doctor he’d seen at the hospital, he decided he would nonetheless return to Crato. Elizabete asked him if he was sure, if he didn’t want to try to get an earlier appointment for any of the tests; perhaps they could find a way. But he demurred, and the next night he left by bus for Crato.
When I discussed Benito’s case sometime later with a doctor who worked in Pirambu, he only shrugged and said, “All the people here want is drugs. They think that is what medical care is. This is why our work is so hard. We’re trying to provide something else—preventive medicine. We try to teach people how to take care of their bodies so they won’t need so many drugs in the long run.”
Reflecting on this sequence of events, I was initially surprised by how much medical care an impoverished man like Benito received during his relatively short stay in Fortaleza, a city he had never before visited. On the other hand, I had to agree with Fabiana that in the end, relatively little was accomplished. Benito had been seen by several doctors but never given a diagnosis; his tests remained incomplete, including blood tests and an expensive MRI exam; and he left without any medication or hope for a cure. Perhaps most surprisingly, Benito himself seemed content when he left the favela. He defined his visit as a success and remarked pointedly on the quantity and quality of resources he had received while in Fortaleza.
I highlight this story because it puts into relief that health care is never only about finding a cure, negotiating treatment, or allocating resources. It is also a site at which social class, generational tension, aspiration, and citizenship are expressed and reproduced. In the months following Benito’s departure I continued to return to a series of questions: How had Benito, living in the rural backland of a relatively poor Northeastern state, come to imagine Fortaleza as a place that would have accessible medical care? Why was Fabiana’s perspective on the public health care system so different from that of her mother? And what was entailed in the doctor’s vision of preventive medicine, and how was it connected to the rights discourse that I was beginning to observe in selected venues in Fortaleza?
Each of these questions could only be answered when I considered the daily structuring of class, gender, and generation in the favela as well as the historical origins of putatively new concepts such as democracy and citizenship. Participant observation and extended interviews over many years in the same field site allowed me to observe social patterns that illuminated the broad relationship between health and citizenry. By grounding my research in one particular community, I hope to contribute an ethnographic dimension to discussions of health care reform that have largely focused on quantitative assessments of outcomes and expenditures and consistently have framed Brazil’s neoliberal economic policies as independent of or irrelevant to the constitutional claim for health care rights. It is an examination of precisely the other, ethnographic themes that I argue will help us to understand if and to what extent a “right to health” is rooted in peripheral residents’ ideas and practices of health care.
Human Rights as Cultural Practice
One way of thinking about political rights, civil rights (sometimes referred to as social rights), or even more broadly human rights is as a cultural practice that organizes an individual’s relationship to the collective life of which she or he is a part (Preis 1996). Viewing rights as a form of practice shifts attention away from deliberation over the moral worth of abstract models and toward an understanding of how rights are put to work in people’s everyday lives. Like all cultural practices, rights find their meaning in situated contexts that an ethnographer must elucidate in order to understand how they enter into the life-worlds of individuals and social groups.
As I discuss in chapter 2 of this book, the Brazilian welfare state that emerged under President Getúlio Vargas during the 1930s organized its benefits scheme in terms that suggested an ethos of mutual responsibility across social classes and generations. One of the basic premises underlying this form of social protection was that the risks inherent in living and working in a market-based society could and should be reapportioned from those who were protected from risk and economic uncertainty to those who were less fortunate and unable to bear those risks alone (S. Brooks 2008). In practice this reapportionment was restricted to private-sector workers who through their contributions of labor and taxes were repaid by assistance from the state in the form of medical care, unemployment wages, and retirement funds (Holston 2008).
During the 1930s and 1940s Pirambu was just emerging as a community, and few of its residents were members of the classes of laborers who benefited from the social protection schemes conceived by President Vargas. If we look at newspaper coverage of that time, however, journalists report that starting in the early 1940s residents began to lobby for a broad spectrum of civil rights, including the right to ownership of the land on which they were living, reliable transportation, running water, electricity, and access to basic health services.
This activity—public demonstrations for services from a city that had yet to recognize personhood, let alone citizenship—is a form of cultural practice that uses public appearance to draw attention to the contradictions in the arrangements that exclude them. Both Hannah Arendt in her classic 1951 work, The Origins of Totalitarianism, and James Holston in his 2008 ethnography of insurgent citizenship in urban Brazil have referred to this practice as advocating for the “right to have rights.” Although not a formal model of “rights,” it is world-changing nonetheless: by acting as if they had the rights that they lacked, residents of Pirambu managed to actualize aspects of civil equality to which they aspired, such as access to legal housing, cleaner water, public transportation, and medical clinics. Holston summarizes this activity during a later period, the 1970s, in the city of Sao Paulo: “In this performance they produced a transformation in the understanding of Brazilian citizenship itself of great social consequence, from a distribution of privilege to particular categories of citizens to a distribution of the right to rights for all citizens” (241).
More than a century after the initiation of the welfare state and in part as a response to the decades-long swell of activism among the urban poor, the Brazilian government partially amended the practice of selective reapportionment of worker benefits by turning one category of benefits, health care, into a right of citizenship rather than of employment. Ideally this amendment affirmed the principle that with regard to health, society ought to provide security to all members of the Brazilian nation-state regardless of their ability to contribute remunerative labor to the state. But in practice Pirambu’s older residents rarely sought health care on these terms, and younger, more affluent residents of the community tended to eschew the idea of a collective good altogether in favor of consuming the medical care of their choice. In writing an ethnography of health care reform and of the rights it is purported to enact, I have drawn attention throughout to the disjuncture in the ideal and the practice of health care rights in Pirambu and to the historical origins of both abstract concept and social practice.
From Patronage to Neoliberalism, Ceará’s Turnaround
When politicians in Ceará, the Northeastern state where I conducted my fieldwork, began adopting and promoting the health care reforms associated with the SUS, they did not claim to be improving Brazil’s welfare state. Instead they touted these programs as replacing the much older system of patronage that dominated the Northeast for generations. In 2003 Fortaleza’s secretary of health commented in a radio interview at the Universidade Federal do Ceará, “Health institutions used to be run by the mayors. Now with small councils in the communities, people are more involved [in health care matters], so they start demanding things.”6 The secretary was referring to the system of unequal exchanges and dependencies pervasive in Ceará in which mayors of small towns would often run municipal dispensaries where the rural poor could avail themselves of medical care in return for the appropriate vote. As I discuss in greater detail later in the book, Ceará’s politicians and medical professionals repeatedly stressed to me that they were interested in a transition in the understanding of health care from a favor to a right.
International coverage of several innovative health care programs that Ceará adopted in the wake of the new health care reforms also drew attention to the erosion of state patronage and aristocratic privilege. Among the publications that touted Ceará’s advances were Newsweek, The Economist, the Christian Science Monitor, and the New York Times. Carefully avoiding any mention of the country’s landmark transition to a rights-based model of health care, these articles commended instead Ceará’s sudden turnaround from an impoverished, paternalistic Northeastern state to a model of good governance intent on replacing networks of patronage with merit-based employment and educational opportunities. The reporters of these articles saw the shift toward “good governance” as enabling Ceará to move from the near-bottom to close to the top of Brazil’s twenty-six states in terms of child-health indicators such as vaccinations, duration of breast-feeding, and child visits to pediatricians.
In extolling the moral virtues of vanquishing a corrupt regime, the articles explicitly celebrated the neoliberal political policies that were enacted to support Ceará’s extensive health care reforms in the form of public-private partnerships. An article in the New York Times, for example, describes Ceará’s development formula as “an aggressive attack on social ills paired with an equally aggressive courtship of private investors.” In the same article the reporter lauds the glamorous new Fortaleza, already evident by the mid-1990s, that went from a “northeastern dust bowl, with nothing to export but its population of workers” to a “beachfront city, full of European tourists and foreign investors, imported cars and a thriving fashion industry.” I witnessed this transformation of Fortaleza firsthand; over the span of 1998–2009, during which I conducted fieldwork, every visit seemed to land me in a glitzier, ever more gentrified city with a wealthier and more entitled citizenry.
Although some of the newfound wealth seeped into the favela in ways that I track within this book, patronage and dependency have continued to dominate social life in the favela. Politicians made hopeful claims that the new regime of democratic and political rights would sweep away such instituições antiquadas (antiquated institutions), but older residents I knew in Pirambu continued to describe their social and economic superiors in terms of being bons patrões (good bosses) or maus patrões (unreliable or malevolent bosses). Bons patrões, depicted as kind, just, and generous, were carefully cultivated despite the potential of civil rights to directly provide the very forms of protection they sought from their superiors.
Reciprocity among family members, friends, and neighbors also dominated the tempo of life in the favela. Household goods, food, medicine, and acts of care circulate continuously between homes in Pirambu. Contributions are solicited for residents in desperate straits, and sharing good fortune is expected. I rarely heard residents suggest that they had too little to be able to give to someone else who might need it more, and this ethic is one of the few that I observed transmitted unfailingly between generations.
In the domain of health, both patronage and reciprocity continue to structure social practice. A sick uncle might persuade his niece to contact the family who employs her as a maid to see if they have connections at a certain hospital. The neighbor of an ailing single mother will start a collection for medications, bus fare, and child care, not stopping until the need is met. The new health care system is intended to disrupt this older model of seeking care—by authorizing the pursuit of health as an inherent right belonging to each citizen rather than a product of social interactions mediated by one’s position in society or in a local community. As a result, community residents confronted a health care system rooted in an ideology of individualized human rights layered on top of a social life deeply embedded in older systems of patronage and reciprocity and a neoliberal economic context that celebrated market exchange and individuals’ abilities to fulfill their own needs and interests. Depictions of how residents navigated these multiple, overlapping, and often contradictory doctrines form the core of this book.
That Which Is Taken for Granted
When I arrived in Pirambu for the first time in 1998, it took me a long time to identify the public health care clinics that dotted the favela as places people went regularly for care and assistance. Part of this had to do with how seamlessly they blended in with the commercial and residential buildings on the streets. Low-slung, often without any formal placards announcing their purpose, health care clinics in Pirambu rarely stood out. But my initial inattention to the clinics also had to do with the way residents seemed to make little of the relatively robust network of neighborhood clinics. Nor did they appear startled that although getting their children through secondary school was often a dubious proposition, they could attend neighborhood clinics and even specialty hospitals without paying fees. It was this nonchalance, though, that eventually did attract my attention.
In Outline of a Theory of Practice (1977), Pierre Bourdieu uses the term “doxa” to denote that which is taken for granted in any particular society.9 Doxa, according to Bourdieu, is the experience by which the natural and social world appear as self-evident or, as he succinctly puts it, what “goes without saying because it comes without saying” (167). In Pirambu, the existence of public health care clinics was largely taken for granted and appeared self-evident to residents. It was only when I started asking older residents who had been involved in the social movements of decades past to describe how the health care clinics had come about that I began to recognize the origins of the clinics as decidedly not self-evident and to learn about the extensive social and political activism required to bring them into existence.
Part of what most interests me with regard to health care reform in Ceará is the doxa that was created in its implementation and those that it replaced. Sean Brotherton, a medical anthropologist, has described this process in Cuba; he notes that “the socialist health care doxa has saturated people’s everyday lives and mundane practices, producing statefostered expectations and feelings of entitlement of particular forms of biomedical health care” (2012, 6).
But we can think of examples closer to home: the slow and uneven process of persuading Americans that smoking is bad for them or that seat belts must be worn while driving or that taking one’s child to the doctor for immunizations is an important and even necessary part of parenting. All of these initiatives require not just political will and public implementation but a change in doxa, in people’s attitudes about how they could and should behave and consequently in how they comport themselves. The success, I would argue, of any one of these public health campaigns required that they become a normalized, unremarkable part of everyday life, that they become “embodied,” to use an anthropological term.
Fully realized health care reform requires a similar shift in doxa, as was explicitly recognized by health care officials in Ceará. While ushering in the reforms that accompanied the 1988 declaration of health care as a human right, administrators and state politicians in Ceará talked about the ways people would have to think anew about health care, as a right, not as a favor, or in terms of prevention instead of medical cures. But what these officials were not necessarily prepared for was the rapid commodification of medical services in Brazil that was exploding as the reforms were being implemented. These newly commodified and privatized health care services were increasingly attractive to a younger, consumer-oriented generation in the favela who aspired to services like dental care, caesarian sections, and private health care plans.
Thus, just as health care officials were working to build a doxa rooted in ideals of human rights, community participation, and preventive medicine, younger citizens living in the favela were beginning to pursue a vision of health care that revolved around notions of consumer freedom, individual choice, and self-enhancement. In documenting this clash of ideals and aspirations, I hope to contribute to a rich body of anthropological scholarship in Brazil that recognizes the extent to which medical services have become a key indicator of social difference among the urban poor (Béhague, Gonçalves, and Dias da Costa 2002; Biehl 2005, 2007; Edmonds 2004, 2007, 2010; McCullum 2005; Sanabria 2010).
To attend to this broad set of concerns I use descriptions of medical decision making, or what is known as health-seeking behavior, to capture changing expectations among Pirambu’s residents about what health care could and should be and more broadly about what responsibility the state of Ceará or the city of Fortaleza has to its poorest citizens. I understand medical decision making to be a form of social reproduction; from the perspective of residents of Pirambu, various forms of medical care and treatment and of types of political participation around health care propose genuinely different accounts of personal identity and morality (Brodwin 1996). Thus when residents decide to seek private medical care instead of going to a local public clinic, ignore invitations to health care council meetings, or activate networks of patronage in order to access public medical care, they are engaging in acts of self-definition that reproduce individual ideas about health, community, belonging, and exclusion but also structural forms such as the levels of social class in the favela and the two-tiered health care system in which they are enmeshed.
A Right to Health is organized into two parts. In chapters 1 and 2 I describe the historical emergence of categories—democracy, citizenship, preventive medicine, public health, and participation—that constitute contemporary social life in Pirambu. In chapters 3 through 6 I investigate specific examples of health care reform, medical decision making, and community activism in the context of intergenerational tension in Pirambu.
In chapter 1 I describe how residents of Pirambu came to understand themselves as citizens of Fortaleza and to speak about their social and economic aspirations as civil rights, including the right to accessible health care. I contrast this historical account of citizenship in Pirambu with descriptions of how the practice of citizenship is being reformulated by a younger generation in the favela. In chapter 2 I trace the relationship between welfare assistance and the poor, describing how public health became a goal of the Brazilian state, the emergence of the public and private health care sectors in Ceará, and the local social movements that helped to extend health care to peripheral communities around Fortaleza.
In chapters 3 and 4, respectively, I examine two programs that arose as a result of the health care reforms in Fortaleza: democratic councils designed to involve a broad array of citizens in the creation and implementation of new health care practices and Farmácia Viva, a public health program devoted to ensuring the correct and scientific use of traditional medicine. I use an examination of the health councils and Farmácia Viva to highlight tensions and shifts in Pirambu in concepts such as participation, health, and preventive medicine.
In chapters 5 and 6 I explore the generational divide in the practices and discourses that have surrounded medical decision making in Pirambu. I suggest that paradoxically the universal right to health guaranteed in the 1988 constitution is being undermined by a new generation of young favela residents for whom health care appears to be neither a favor nor a right but rather something that, in its privatized form, has become an aspiration. In my conclusion I analyze contemporary social movements in the favela that have shifted away from protests directed at achieving social equity and toward expanding individual freedom to exercise choice. These shifts in the practice and form of social activism help to explain some of the contradictions observed throughout the book in the history and current unfolding of health care reform in Ceará.
Notes on Method
I lived in the community of Pirambu from October 1998 through August 1999. In the fall of 2001 I spent another three months in the community, and I returned again for two-month periods in the summers of 2005, 2007, and 2009. The decade span of fieldwork visits allowed me to track shifts that I saw emerging there in terms of how residents were defining themselves, their political views, and their health care practices as well as broader changes in the community such as how social movements were evolving. Repeated visits to the field enabled me to form close friendships within several groups of residents, which helped me to develop something closer to an insider’s perspective on the favela than might have otherwise been available to me.
Several additional circumstances were important to how I conducted my field research. During my first period of fieldwork I lived with an older woman, Isabella Ribeiro, and her thirteen-year-old adopted daughter, Vera. Living in such close quarters with the same two people throughout the first part of my research meant that the world I got to know in the favela was, at least at first, largely their world. I came to know their friends and family members, I frequented their favorite markets and snack shops, and I visited the schools and religious institutions they attended. Although I broadened these experiences during the latter months of the first period of fieldwork and ultimately was able to sustain broader networks of relations in the favela, my research is unquestionably conditioned by the formation of these initial relationships.
I arrived in Pirambu under the direction of Adalberto Barreto, a psychiatrist and professor of social medicine at the Universidade Federal do Ceará who had spent nearly a decade advocating on behalf of the community and providing mental health services for its residents. My connection to Adalberto had several advantages. First, he was generally well liked within the community, and thus I was almost immediately accepted and looked after by the residents he knew in Pirambu. Second, Adalberto was extremely well connected to the medical community in Fortaleza, which made pursuing interviews with public health agents and government officials much easier than it might have been.
Finally, toward the end of my first period of fieldwork in Pirambu I met six young women friends from the neighborhood who took it upon themselves to rescue me from what was perceived as the very dour work of conducting interviews and following people around to their various medical appointments. Excursions to the mall and nearby beaches soon followed, and as I grew undoubtedly happier in daily life in the favela, I also came to understand more about the community in which I was living. Much of what I have written about an emerging, younger, and more upwardly mobile class in the favela is based on my interactions with this group of women and their extensive network of friends and family members. Though the daily practices and ideologies I observed within this milieu were not representative of “average” favela life, it was certainly a robust and increasingly vocal segment of Pirambu’s population and serves as a reminder, as scholars who work in urban peripheral areas of Brazil have commented, that these communities are composed of multiple social and economic classes (Caldeira 2006; Holston 2008; Perlman 1976, 2010).
The bulk of the ethnographic data upon which I base this book is composed of the illness narratives, medical case studies, and life histories I collected during my fieldwork. The collection of these data required participant observation and intensive formal and informal interviews. Once I had lived in the community for several months and had come to know people on a more intimate basis, I asked if I might accompany them on future visits to doctors and clinics. I was rarely turned down, and the poverty and duress under which most residents of Pirambu suffer meant that there was rarely a shortage of opportunities to accompany someone to a clinic visit or to observe them in the midst of medical decision making. The case studies I compiled for this book are drawn from a total of approximately fifty such studies I collected during my multiple stays in Pirambu. Most people requested that their real names be used, and that is what I have done with the exception of several residents described in chapters 1 and 6 who requested that names of their choosing be used instead.
In addition to observing medical decision making and recording life histories of those involved in the decisions and of their immediate family members, I spent my time becoming acquainted with the public and private health care system of Fortaleza. On every trip to a hospital or medical clinic I made with a resident of Pirambu, I met with someone at the medical institution and would often return the next day or week for follow-up interviews. At Farmácia Viva, the focus of chapter 4, I conducted interviews with the program’s staff and recorded observations I made at several of its clinics.
Fortaleza’s political elite was small and accessible enough that I managed to speak with many people who worked at the top level of the city’s health care delivery system. Living in the favela while I was conducting research meant that I was constantly traveling into Fortaleza from the same starting point as residents themselves. Though not an insider by any means, I believe I acquired an additional kind of knowledge by taking the same buses residents of Pirambu took, often arriving at interviews sweaty, tired, and uncomfortably thirsty and returning at night, descending from the bus back into the dense atmosphere of the favela.
The final data upon which I base this study are derived from the archival research I conducted about the history of Pirambu and the popular social movements out of which the favela and its social services emerged. I must stress that I was particularly fortunate in this endeavor in that Pirambu has an office, the Centro Popular de Pesquisa, Documentação e Comunicação (CPDOC), specifically devoted to the compiling of historical and statistical data about the favela. The office was small but contained reams of material about the community compiled by social historians, regional scholars, and students and professors from Fortaleza’s two research universities. Most low-income communities do not have the benefits of such a detailed written history, and the center serves as a reminder of the high degree of external involvement in Pirambu as well as the self-consciousness and political awareness of many of its residents.
“This excellent ethnography . . . will appeal to many audiences and lends itself well to undergraduate teaching. What is particularly attractive about the book is its deft handling of ethnographic evidence: it shows rather than tells. This approach is gratifying because it trusts the scholarly reader to draw suggestive connections to multiple bodies of contemporary theory rather than hammering together an ambitious theoretical armature with a few slender tacks of ethnographic detail. It is inviting to the student reader because it is a lively, funny, touching read – full of memorable, evocative description and incident – that students will readily be able to mine for social theoretical points. . . . Jerome’s analysis offers keen insight into the current political situation in Brazil.”
Canadian Journal of Latin American and Caribbean Studies
“[A] compelling and timely ethnography…A Right to Health combines a detailed history of Brazilian health care with compelling illness narratives.”
Journal of Latin American and Caribbean Anthropology
“Weaving ethnography and historical material, this book shows how low-income Brazilians have actively demanded, pragmatically secured, and sometimes rejected rights to healthcare. This carefully researched and clearly written work illuminates the changing and complex relationship between health and citizenship in Latin America.”
Alexander Edmonds, Professor of Anthropology, University of Amsterdam, and author of Pretty Modern: Beauty, Sex, and Plastic Surgery in Brazil
“The citizenship project in Brazil since the constitution of 1988 has become a critical case study. Recently, along with Cuba, it has provided a model to other Latin American countries that have incorporated health as a fundamental right of citizens and implemented universal health systems. This book is a timely analysis of the Brazilian case, and, I think, the first from this point of view in anthropology.”
Kathleen Musante (DeWalt), Professor of Anthropology and Public Health and former Director, Center for Latin American Studies, University of Pittsburgh; author of Nutritional Strategies and Agricultural Change in a Mexican Community; coauthor of Participant Observation: A Guide for Fieldworkers; and coeditor of The Cultural Feast: An Introduction to Food and Society