Flying over the city of Caracas for the first time in the mid-1990s, I looked down to see the bright lights twinkling on the hillsides surrounding the city, lighting up the earth below. I remember feeling a mixture of excitement and nervousness as the plane descended. I had read about the ranchos, the poor neighborhoods of makeshift houses forged into the hillsides and clinging precariously to the land. They have been variously called dangerous and violent, dirty, ugly, unhygienic, and illegal and noxious, among other terms. Those descriptions were very different from what I was seeing from this altitude. Contrary to those negative images, while flying over these hills all I could think of was how majestic the lights looked encircling the valley of Caracas. I eventually came to know just how problematic those hillsides would be for many of the health professionals I met with over the years. The ranchos, as a metaphor for middle-class angst in the face of perceived symbolic and geographic encroachment by the poor, the “violent,” the “illegals,” and generally the “uncivilized,” would become apparent as I settled into this bustling city. The houses perched on hillsides looking as though they might slide down at any moment, crowding one atop the other and begging for a space to exist—those were the houses where many of the women I would later meet lived.
By 1975 the urban population in Venezuela was estimated to be around 82 percent, and this trend from rural to urban continued to accelerate. Although all cities experienced this ballooning growth, by 1989 Caracas was by far the largest city, with 3.5 million residents, and Maracaibo, the second largest, had a population of 1.35 million (Haggerty and Blutstein 1993). Along with this urban growth, the ranchos, which at the time housed between six hundred thousand and seven hundred thousand people, quickly grew into barrios (poor neighborhoods), in the process becoming a point of contention for many middle- and upper-class Caraqueños. One Venezuelan health official whom I interviewed remarked that the barrios represent the “ruralization of the urban by the poor”—a place where immigrants, some of them undocumented, live in what are deemed to be “unhealthy” conditions. According to him, this “ruralization of the urban” occurs when people keep living in their “rural cultural ways” in the city. They are what he calls conformistas, or conformists, people who conform to what they have, not wanting to better themselves or their position in life. He further described the city as being two in one: “one which people know about” (the urban city) and “one which is unknown” (rural-urban barrios). Given this description, “urban” Caraqueños generally view the barrios as mysterious, backward, underdeveloped, and unruly places in which the threat of violence is great (Moreno 2016). More important, the perceived violence of the barrios is viewed as a threat to the urban (middle and elite classes) Caraqueños (Coronil and Skursky 1991). By contrast, the city center of urban Caracas represents modernity, development, progress, and a sense of order. Moreover, this same health official lamented the fact that, “unlike in other cities, which have their poor areas on the outskirts of the city, where they are not visible, ours are visible, we are surrounded.” These views, which embody class, nationalism, and modernity, set up many of the themes that I encountered while conducting health-related field research in Caracas. Along with gender, social class is paramount for understanding Venezuelan configurations of cervical cancer and, in a broader sense, health and illness.
When I first arrived in 1994 to begin an ethnographic study of cervical cancer patients in two oncology hospitals, I found myself in the middle of a political climate of neoliberal austerity and uncertainty. President Carlos Andrés Pérez was under house arrest at the time, accused of corruption. Economic and political instability, along with neoliberal policies integrated into the health-care system, had largely wrought a structure that met the needs of neither the most vulnerable nor increasingly the middle class. It was clear that Venezuela’s public health sector in general was at a crucial period, amid social, political, and economic turbulence; this wealthy oil-producing nation with a stable democracy on the global stage through the 1960s and 1970s produced violent episodes and political instability during the 1980s and 1990s. The timely political instability led me to one of the central questions that drew me to Venezuela: How was public health affected by austerity, and could a connection be drawn with Venezuela having some of the highest rates of cervical cancer in Latin America? As I had already developed an interest in cervical cancer through my previous work—particularly in relation to the social construction of disease and gender—Venezuela offered another dimension to study, namely neoliberalism and cancer. When I began my research and focused on the interactions of patients, doctors, and nurses during treatment—one of the components of my study—it became clear that the political landscape was critical to what I was observing in the hospitals and the public health literature I was analyzing. I began to notice a pattern: the narratives circulating about cervical cancer risk in the public health literature—as well as among administrators and physicians—fit quite well with neoliberal policies that, in a broad sense, emphasize individualism, less government involvement, and privatization of health care. Neoliberal policies that started taking root in the 1980s were shaping health care across Latin America. Since then much has been written about how these structural adjustment policies backed by the World Bank and the International Monetary Fund failed to deliver the health care benefits promised (Homedes and Ugalde 2005a, 2005b; De Vos 2006; Hartmann 2016).
The more I witnessed, the sharper my focus became on what was taking place politically and how it manifested not only in state approaches to health care, but even in the relationship among patients, doctors, and other hospital workers. What emerged is a multilayered ethnography about women’s experiences with cervical cancer in Venezuela, the doctors and nurses who treat them, and the public health officials and administrators who set up intervention programs to combat the disease. At the same time, I have contextualized the experiences and interactions of patients, doctors, and health administrators historically, tracing the relationships among nationalism, modernity, and neoliberalism to show how the cultural politics of cervical cancer risk in Venezuela developed through the othering of behaviors marked by the intersections of class, race, and gender. As Virginia Dominguez asks in her work on cultural politics, it is important to understand the strategic social and political uses of culture: “When is it that one sector of society invokes a cultural argument to explain a social, political, or economic reality?” (1992, 21–22). In terms of cervical cancer in Venezuela, one of the ways in which risk was conceptualized, particularly during the time I was there in the 1990s, was in regard to culture and cultural difference; specifically, physicians and health care administrators pointed to a lack of culture and a lack of hygiene among female patients. Importantly, these risks were also encoded in the public health literature distributed to educate women about the disease. Medical health personnel framed the material largely as a concern about poor women being at risk for cervical cancer because they lacked the ability to properly receive, digest, and act upon medical prescriptions for healthy citizenship. In making sense of the connections among nation, race, gender, class, and health in Venezuela, I am concerned with the political uses of culture in health discourse (Wailoo 2006, 2012) and the implications of this discourse for medical interactions and patient healing.
At one level, this work is a vehicle presenting the narrative testimonies women provide of their varied experiences—their personal suffering, pain, distress, confusion, meaning making, resilience, and strength in the face of cervical cancer. It is about their multiple concerns coping with cancer (e.g., family, work, finances, sexuality, mental and physical well-being) and the microlevel interactions between patients and their doctors. The women’s personal stories reflect their grappling with the uncertainty of their health amid the everyday anxieties, for many, of conditions of poverty. One cannot, however, begin to understand women’s experiences in the hospital setting as they sought explanations and underwent treatment without attention to the broader social contexts of race, class, and gender relations. I analyze what it means for the women to confront a disease they generally know little about and that, simultaneously, stigmatizes them as social marginals, burdens on society, and ultimately as threats to the health of the modern nation. In doing so, we understand the problem of cervical cancer in Venezuela and the experiences of women who are afflicted within this broader framework.
At another, macro level, this project is also about the social and cultural configurations of a disease that emerge within a nexus of class, race, and gender relations. In particular, I examine the medical discourses surrounding cervical cancer that characterize women who are diagnosed with it (or who are “at risk” for it) as backward, uncultured, unhygienic, and promiscuous. The cultural politics of cervical cancer in Venezuela during the 1990s, therefore, is largely about how women are constructed as social dichotomies that either contribute to the nation or detract from it: clean or dirty, sexually appropriate or promiscuous, cultured or uncultured, civilized or uncivilized, to name just a few. By conducting interviews with public health administrators and health-care providers and analyzing the content of newspapers and public health documents and education materials, I argue that ordinary and mundane social and medical welfare projects are significant sites for understanding some public health intervention programs as instruments through which modernization practices are scientifically legitimized and where nationalist cultural politics intersect. Just as important, the microlevel patient-doctor interactions I observed were mediated by the scientific discourses surrounding cervical cancer. Indeed, these interactions cannot be fully understood without this multilayered approach.
When I returned to Venezuela in 2008, the political climate had changed dramatically following the election of Hugo Chávez nearly a decade earlier. As I write these words, remembering those early days compiled from field notes and persistent memories, I am struck at how so much changed since the narrative of “problematic” barrios during the neoliberal 1980s and 1990s became the epicenter of a Chávez Bolivarian revolution and rallying cry for social justice for the poor and disenfranchised. My return marked a contrast to an ethnographic project grounded in a neoliberal time and place. That same geographic space of sparkling lights that first caught my attention is at the center of this work in many ways. The lights below, as I once again flew over the city, seemed to take on new meaning, representing the margins coming to the center and challenging social, political, and economic invisibility with their bright glow. David Smilde and Daniel Hellinger (2011, 9) note:
The largest segment of the Chávez coalition has come from within the masses of impoverished Venezuelans existing on the margins of formal citizenship (Roberts, 2003). These supporters are not strongly ideological. Rather, their support is based upon a perception, and in most cases a lived experience, that for the first time they have a government that prioritizes their plight and fights for their interests.
Returning to Venezuela, I wanted to account for a political climate that had changed substantially and to see whether this had also resulted in a shift in the cultural politics of health and disease. It was a unique opportunity to examine the state of cervical cancer representations, discourse, and care in light of the change in the social and political circumstances since I had completed my original fieldwork. Much to my delight, I was able to talk with some of the same physicians and administrators whom I had interviewed over a decade earlier, and I also met new health-care providers and administrators who were working in the two oncology hospitals that I had known so well, as they were once a part of my daily routine.
A Brief Reflection on History, Class, and Venezuelan Society
In Venezuela, class difference—and the regulation of the lower classes in particular—has historically been tightly linked to the national goals of modernity, progress, and development (Coronil 1997). Many affluent Venezuelans saw the need to regulate the poor, whom they perceive as a threat to social and economic progress. This sentiment targeting the poor had been particularly pronounced since the 1980s, because of the social, political, and economic problems that brought about instability in the county (Levine and Crisp 1995). During the Caracazo, for example, in February 1989, when hyperinflation and economic insecurity brought protest and looting throughout Caracas, “the middle-classes thought the poor were about to come hurtling down upon them from the surrounding hills to loot and pillage their homes” (Mac Gregor and Rubio Correa 1993, 105). The poor as threat is a persistent theme in Venezuelan society and one that will come up repeatedly throughout this work as I explore the configurations of a disease among women.
To contextualize, it is necessary to briefly trace how Venezuela, a wealthy oil-producing nation, struggled to locate itself within the realm of modernity while at the same time experiencing economic and political instability, which in the past decade and a half has pushed the nation more toward third-world “underdevelopment” than first-world “development.” After 1958, with the end of Marcos Pérez Jiménez’s presidency, Venezuela enjoyed a relatively stable political system with democratically elected presidents. For a brief time the petroleum boom of the 1970s also helped fuel economic prosperity for some. In 1977, the per capita income of Venezuelans was boosted to an all-time high, and the ranks of the middle class swelled. As Mahmood and Mutaner (2013, 63) note:
This was the result of a political pact between the major political parties in 1958, known as the Punto fijo. While the country was experiencing this stability in the political realm, the system was exclusionary for the majority of the population. The sidelining of this majority sentiment started becoming obvious in the 1970s and 1980s. Venezuela is predominantly an oil-based economy. A small, elite group had tightened its grip on this major source of economic power with close ties to political power. Exclusionary policies started creating profound social inequities which, along with other macro-economic crises, brought the level of people living in extreme poverty to 54% by the end of the 1980s.
Moreover, in the mid-1980s, during the presidential terms of Jaime Lusinchi (1984–1989) and Carlos Andrés Pérez (1989–1994), serious economic crisis and political scandals implicated the presidents and several of their ministers, setting the stage for civil unrest and violent protests (Ellner 1994). Pérez, though speaking a populist discourse and promising a return to the economic stability of the 1970s, instead implemented a plan known as El Paquete, which rested on recommendations from the World Bank and the International Monetary Fund (IMF). This plan included “privatization of public enterprises, reduction of public expenditure, liberalization, and deregulation . . . as well as providing a greater opportunity for foreign oil companies to exploit Venezuelan oil” (Mahmood and Mutaner 2013, 63). As Hartmann (2016, 2146) documents:
The Latin American debt crisis of the early 1980s, coupled with US-supported dictatorships and democracies, resulted in a wave of neoliberal and structural adjustment policies developed by economists from the United States and Latin America alike. The International Monetary Fund (IMF) and the World Bank perceived mounting public debt to be a result of state inefficiency, bloated social spending, and economic policies that hindered the market economy. In exchange for economic loans, these 2 organizations required Latin American countries to adopt a suite of neoliberal ideological reforms that cut social spending (particularly in the health sector), reregulated the economy in favor of free and open markets, privatized state-owned corporations and services, and opened borders to foreign investment.
These policies generated popular mobilization against him, which led to his removal and to that of his successor, Rafael Caldera, who maintained the same neoliberal trajectory. The most significant of these events of public protest included the Caracazo that left hundreds dead (Burggraaff and Millett 1995) and two attempted coups: one on February 4, 1992, and a second attempt later that year, on November 27. In May 1993 the Senate voted to suspend President Pérez after he was indicted for misuse of public funds.
When Pérez was placed under house arrest on charges of corruption, the mood of the country was, among other things, that of embarrassment. When I arrived in 1993 to begin my preliminary research, the topic was of considerable chagrin to many Venezuelans I spoke with, from taxi drivers to doctors. One taxi driver told me, “I don’t even want to talk about it, it’s an embarrassment to the nation that such a thing could happen.” Venezuela, a country that prided itself for being one of the Latin American countries with the longest history of democracy and a wealthy oil-producing state, was experiencing a great blow to its national honor. Many Venezuelans asked, “How could this happen to such a great nation?” Coronil (1997, 389) has traced this demise, noting:
The Venezuelan state has presented itself as the miracle worker that could turn its dominion over nature into a source of historical progress. But largely because much of its power is borrowed from the powers of oil money rather than being produced through its master over nature, the state has been limited to magic performances, not miracles. By analyzing the enactments that have constituted it as a magical state, I have examined its historical transformation during this century, tracing its role in the frenetic rise of Venezuela as a financially wealthy oil nation and its no less violent fall as an indebted third-world country.
If these economic and political crisis were not enough, in early 1994 banks across Venezuela began to collapse. At the beginning of the year, monetary authorities shuttered Banco Latino, the country’s second-largest bank (Goodman 1995).
Well before the political and economic upheavals of the presidencies of Luisinchi and Pérez, though, the continuing legacy of the Punto Fijo political pact, along with excess spending of Pérez’s first administration (1974–1979), which was carried on by the governments of Luis Herrera Campíns (1979–1984) and then Luisinchi’s administration (1984–1989), set the country up for grave economic problems. Throughout these years, Venezuela’s economic system had been based on massive subsidies, extensive government controls, artificial employment, and highly distorted protectionist trade policies. As a result, the economy experienced major structural damage, rendering the distribution of income and wealth increasingly inequitable (Goodman 1995), with only the Venezuelan elite benefiting from the economic policy. From 1980 to 1992 it is estimated that average Venezuelans lost over half of their purchasing power. In addition, the late 1970s to the early 1990s saw individual daily caloric intake drop from 2,651 to 1,350 and the proportion of the population under the poverty line increase to 64 percent. The number of poor increased from 7.8 million in 1987 to 9 million in 1989. When I arrived in Caracas in late 1994 to conduct my research, I found myself in the middle of the economic, social, and political crises that had been in the making for decades.
Against this background, Chávez’s social democracy represents a transformative political change from the earlier administrations’ focus on privatization and austerity. The Chávez administration, which began as a social democracy and gradually shifted to what Chávez himself described as the socialist Bolivarian Revolution (Smilde and Hellinger 2011), rejected neoliberal privatization in the economy broadly and of medical practice in favor of social medicine more narrowly. The administration developed a number of new ministries meant to provide a larger role for government in areas such as health, education, and housing. One of the greatest changes in health policy was the development of the Misión Barrio Adentro program (Inside the Barrio), which put community clinics in the barrios of Venezuela—the barrios that had been virtually ignored in terms of health services during previous administrations. The shift marked an embrace of horizontal community-based health care that took up the recommendations put forth in a document known as the Declaration of Alma-Ata drafted at the 1978 International Conference on Primary Health Care in the former Kazakh Soviet Socialist Republic (Paluzzi and Arribas Garcia 2008). This document was the first of its kind calling for a global health initiative, “expressing the need for urgent action by all governments, all health and development workers, and the world community to protect and promote the health of all the people of the world” (WHO 1978).
The Inside the Barrio program included bringing approximately twenty thousand Cuban doctors to Venezuela to work in the barrios and health clinics around Caracas to serve the poor and those who had no access to private or military-based clinics. Because such striking changes had taken place, I returned to examine whether such transformations in public health were also reflected in discourses of disease, particularly that of cervical cancer, since I had last been there. In light of the cultural politics of health care that had shaped the previous period, the opportunity to consider how disease discourse could transform along with a radical shift from neoliberalism to social democracy (and eventually socialism) is important for understanding just how this political transformation can affect definitions of disease and ultimately national responses to health care.
Specifically, during the neoliberal period, risk centered largely on individual behaviors that were classed, raced, and gendered in ways that reinforced broader goals of reduced government in health care in favor of an atomized approach that would allocate fewer resources to the health-care system. After all, if the framing of risk was such that largely behavior, rather than structural inequities, put people at risk—marginalized people, in particular—it would make perfect sense to construct “at risk” populations as ultimately tasked with keeping themselves healthy and to blame them, rather than an inability to access preventative health care, if they got sick. By contrast, under the Bolivarian democratic framework established by Hugo Chávez, I found that disease risk discourse is conceptualized as a structural problem, rooted in what medical anthropologist and physician Paul Farmer (1996, 369) describes as structural violence, “a series of large-scale forces-ranging from gender inequality to racism and power—which structure unequal access to goods and social services.” Although the political uses of culture still figure prominently—largely in reference to calls for a return to Bolivarian roots of the pueblo—the focus is not on individual responsibility but, rather, on state responsibility to health. Thus, in returning to Venezuela, I was interested in determining how risk factors for cervical cancer shift along with political changes. I argue in these pages that risk factors for cervical cancer in Venezuela are, at least in part, a product of place. In other words, the risk factors that I documented in the mid-1990s, during my initial fieldwork research in Venezuela, were cemented in the context of the Venezuelan neoliberal climate. The political orientation of the Chávez government that came into power after the political upheaval of President Pérez also corresponded to a shift in health and disease discourses, including that of the risk of cervical cancer. The implications for women’s health in microlevel interactions with physicians and in the broader context of public health are contingent on configurations of not only risk but also what it means to think about health in terms of individual responsibility versus social responsibility.
The opportunity to look at another possible shift in the cultural politics of health and disease occurred after the death of President Chávez on March 5, 2013. He embodied the very definition of charismatic leader, and there was speculation in political and media circles as to whether the interim president Nicolás Maduro, who had been vice president under Chávez, would be popular enough to win the special presidential election on April 14, 2013. Maduro would run against Henrique Capriles, a Venezuelan politician and member of the right-leaning political party Justice First and a lawyer by profession. A Capriles victory could mean another change in the political landscape, having implications for the public health sector. In the end, Maduro was elected in a narrow victory. Capriles filed an electoral dispute with the Supreme Court, asking for an audit of the electoral register. In an interview he gave to El País on May 10, 2013, he exclaimed: “They stole the election from me. Those guys stole the elections.” A ruling was given in favor of Maduro, and so, for now, the socialism of the Chávez era continues with Maduro, likely a continuation of health policy that continues to build on social medicine.
Currently, we also see growing oppositional response to the socialism of Maduro and the Bolivarian Revolution. It is not easy to define the opposition, as the intervening years since the death of Chávez and the election of a less-than-charismatic leader of the revolution—in the figure of Maduro—has coalesced disparate groups of people in a seemingly unified front. Even though we can point to former middle-class Venezuelans who were already on the edge of losing economic ground, they aren’t the insurgent citizenry (Holston 2008) who have demanded inclusion and fought for equity from the periphery of poverty. What will happen with the insurgent citizenry who formed the base of the Bolivarian Revolution as the neoliberal narrative of capitalist privatization increasingly encroaches on the narrative of equity through a focus on equality? The lens of equity asks us consider policies that bring the periphery to center. The narrative of equality is to treat everyone the same, which requires those at the periphery to keep struggling with the social, cultural, and political inequities they were dealt. The current political moment in Venezuela also necessitates the next step in acknowledging the neoliberal framing and querying the future of the Bolivarian Revolution.
Why Cervical Cancer? A Woman’s Disease
The study of “women’s diseases,” as such, has a long and at times controversial history. Much scholarly work has focused on the practices of US and European physicians and scientists in their treatment of women’s bodies as objects and the development of specialized knowledge and procedures. For example, Barbara Ehrenreich and Deirdre English (1978) presented a history of medical procedures performed on women “for their own good” that have adversely affected women’s lives, including women’s sexuality and reproduction. Emily Martin (1987) explored the development of obstetrics and the technological tools created to deal with the “problems” of childbirth in its medicalized form. Scholars have also examined the historical circumstances of the emergence of gynecology as a medical specialty and the consequences of this development. Elizabeth Sheehan (1997), for example, looked at the influence of a Victorian doctor in the implementation of a “harmless operative procedure”—clitoridectomy—to cure hysteria, insanity, and epilepsy. Moreover, women’s reproductive and sexual body parts have historically been associated with psychological disorders (and the naming of psychological problems) such as insanity, depression, and hysteria, among others.
There are many works (I have mentioned only a few here) that stand as testaments to the tenacity of medical projects that have been inscribed on women’s bodies for the regulation of women and women’s diseases. I emphasize the “otherness” that the category of “woman’s disease” creates in marking women’s bodies as somehow dangerously different from those of men, particularly those bodies of nonwhite and nonheterosexual women (Somerville 1997). To this end, scholars of colonialism have addressed the ways in which “native” female bodies, particularly in discourses of biomedicine, have been viewed as sexually, physically, morally—and ultimately naturally—threatening to colonial bodies (Vaughn 1991; Comaroff 1992; Whitehead 1995). “Women’s diseases” raise the specter of threat, mystery, and danger that has been associated with historical understandings of women, their bodies, and their fluids (Douglas 1966). What this scholarship has in common is that medical knowledge is not taken as an a priori starting point from which to discern “truth” about bodies and disease. It is this cultural embeddedness of meanings associated with so-called women’s diseases that partly drew me to the study of cervical cancer in Venezuela.
As I worked on analyzing the ethnographic interviews from my graduate student work on beliefs about cervical cancer among physicians and Latinas in the U.S., what came from the interviews with doctors set the stage for my interest in the social construction of medical knowledge. I was particularly fascinated by the perceptions surrounding cervical cancer, as they were embedded in a moral discourse that focused on women’s perceived “nonnormative” hypersexual behavior. At the time, scholars were looking at the moral discourses surrounding HIV and AIDS (see Patton 1992). I was familiar with that literature but was quite surprised to see the extent to which socioculturally constructed ideas about women’s sexual behavior were such a part of what some physicians were saying about the risks for cervical cancer. For example, the word promiscuity was presented as a medical risk factor, but it is marked with morally judgmental social meaning and is often associated with a negative notion of women’s hypersexual behavior (Martínez, Chavez, and Hubbell 1997). Men’s sexual behavior is not typically judged in this way—except when referring to the behavior of gay men during the early part of the AIDS epidemic, when they were often described as having a not only deviant but an out-of-control sexual lifestyle. Focusing increasingly on the moral discourse surrounding women’s sexuality in relation to cervical cancer, my interest in the problem of cervical cancer grew, and I knew that I wanted to work on it. This led me to look at high rates of cervical cancer in Latin America and to my eventual fieldwork in Venezuela.
Disease and Embodiment
While anthropology has been historically geared toward the study of “folk” illnesses, there has been increasing attention paid to the study of biomedically defined diseases such as cancer, high blood pressure, hypoglycemia, and tuberculosis (Martínez, Chavez, and Hubbell 1997; Wood, Jewkes, and Abrahams 1997; Chavez et al. 1995; Balshem 1991; Hunt, Browner, and Jordan 1990; Garro 1988; Rubel and Garro 1992). These projects take as a premise that biomedical illnesses carry cultural meanings, like so-called folk illnesses, and are therefore suitable objects of anthropological study. One of the overarching goals of the literature has been to unmask the cultural assumptions inherent in biomedicine and to demonstrate how these assumptions are embedded in the creation and transmission of medical knowledge and practice (Comaroff 1982; Wright and Treacher 1982; Scheper-Hughes and Lock 1987; Martin 1987; Gordon and Lock 1988; Kuipers 1989; Lindenbaum and Lock 1993; Lupton 1994). As Gordon (1988, 19) has noted:
While biomedicine has successfully created and hoarded a body of technical knowledge to call its own, its knowledge and practices draw upon a background of tacit understandings that extend far beyond medical boundaries. . . . It draws upon and projects . . . understandings of personhood, society, morality, and religion (what is sacred and profane).
This emphasis on understanding medical practice as a cultural practice is necessary for problematizing the disease of cervical cancer. The research presented here takes as a basic premise that medical practice cannot and should not be divorced from cultural experience. Implicated in medical practices and representations of disease are judgments about morality, social class, gender, and race. Rosner (1989, 241) has argued this point quite succinctly:
To assume that scientific practice today tends to lower the importance of moral and social judgments is naive. Any number of medical historians have illustrated that social class, race, sex and ethnicity are all critical factors in determining professional decisions regarding treatment and care.
When the medical field began taking this charge seriously and started to research issues such as racism in medical encounters, a number of studies corroborated the racism and potentiality of racism in medical encounters (see Smedley, Stith, and Nelson 2003; Hardeman et al. 2016). I take this argument further by adding that these judgments are made not only in regard to treatment and to care; in many cases, they represent the definition of disease, which includes its accompanying risk factors. As a scientific institution, medicine appears to generate medical evidence solely from scientific fact. In practice, however, medicine cannot extricate itself from the sociocultural milieu in which it is produced. To understand how, for example, diseases are historically configured—or even how biomedicine has come to enjoy a certain privileged position in most parts of the world—requires understanding medical discourse and practice as a social construction. The social construction of cervical cancer in the context of neoliberalism enables us to interrogate the production and circulation of disease knowledge that goes beyond the medical context. In this case, the discourse of cervical cancer risk is where the convergence of these seemingly separate localities (of scientific medicine, politics, and culture) are made visible. It is not my goal to enter into the debate of science versus culture; it is a debate with no victors and nothing to gain. My only attempt is to reveal—without, I hope, re-creating boundaries—the shared places and spaces that this division may serve to obscure.
Why Cervical Cancer in Venezuela?
The more I studied the epidemiological research on cervical cancer, the greater my awareness grew of the global scope of the problem of cervical cancer. Worldwide, cervical cancer is the second most common cancer in women. It is particularly high in those areas that are deemed low- or middle-income countries (Sahasrabuddhe et al. 2012). Rates of cervical cancer in Latin America and the Caribbean are four and a half times higher than in the United States and Canada. In Venezuela, cervical cancer is the third leading cause of death among women (behind cardiovascular disease and gastrointestinal cancers); it is also one of the most curable cancers if caught in its early stages (WHO 2013). Thus, one of the great tragedies of cervical cancer in Venezuela is the devastatingly high mortality rates for a disease that is largely preventable and curable through early detection. Poor and working-class women bear the brunt of this cancer because they are particularly likely to end up with advanced cancers that are more difficult to treat and to cure owing to lack of access to health care. Cervical cancer is also among the most preventable cancers, yet it has the highest mortality rate among women in Venezuela. At the time I started my field research, human papillomavirus (HPV) was thought to be related to this cancer, but the connection was not as well established as we know now, with particular types of HPV most likely causal agents in the development of the disease. Thus, greater interpretations for risk were available at the time of the initial fieldwork. Nevertheless, the ambiguity, at the time, does not negate that gaps were filled in with perceptions of risk that have relied on raced, gendered, and classed constructions. In fact, when I returned in 2008, a time when certain strains of HPV had been causally linked with cervical cancer, narratives were still circulating among some physicians and the Venezuelan Cancer Society that relied on those constructs.
A Comment on Emotion
The word cancer evokes emotion—usually fear—in most people. I would be remiss to not acknowledge emotion in fieldwork, given that my work took place in two oncology hospitals, and I was surrounded by human fear, sadness, pain, and suffering, as well as hope. The uncertainty related to diagnosis, treatment, and outcomes were part of my daily interactions with women I interviewed and even those I just chatted with in the waiting rooms. At the same time, their emotions elicited emotional reactions and empathy in me. How could they not? Many days after being at the hospital, I felt exhausted and drained. In retrospect I am sure that much of this wrenching personal experience had to do with what I was seeing and hearing and the emotions I was absorbing. Some days were at times also fraught with those in-the-moment methodological and ethical decisions that ethnographers have to make, even if we feel ill prepared to do so: Should I say something? What, exactly? Should I help? How, exactly? If I do so, will I be stepping on someone’s toes, so to speak? Even not acting in the moment is a decision. Navigating power dynamics can be especially tricky in the midst of ethical and emotional situations. One of the very definitions of ethnography is our lack of certainty in our surroundings. We aren’t in the controlled environment of a lab. Instead, we are observing and interacting with the ebb and flow of daily life. We also become part of the environment that we study, and our presence can be disruptive in a range of ways, small and large, as can our integration.
During my fieldwork, I experienced many emotions that I could not have written about at the time. The perspective granted by the distance of years, however, has enabled me to analyze with a balance of retrospective clarity. No one ever discussed emotions with me as part of my ethnography training. I learned about interview techniques and methods, but the psychology of fieldwork was virtually absent. And so I naïvely began my project immersed in the world of cancer, having neither consciously thought about nor prepared myself for the emotions it would bring. Until relatively recently, the emotions of the researcher have largely been ignored and left undertheorized (Hedican 2006). Davies and Spencer (2010) bring needed attention to the subject in Emotions in Fieldwork. They argue that emotions can strengthen our work by providing insights in a similar way that psychological self-awareness does. Hedican (2006, 6) argues that it is integral to ethnographic research:
Emotional work is part of the epistemology of qualitative methods. . . . It is therefore not only a state of being but also a process by which knowledge is a product of our processing of information as individuals. In the social sciences, there is a tendency to focus only on overt behavior, as if this were the only significant aspect of the research endeavor . . . an examination of our inner experiences, especially in terms of our attempts at emotional introspection, is an equally important aspect of sociological enquiry.
When we can step back and acknowledge both the emotional and intellectual aspects of fieldwork, we are able to do better work. Negating the empathy and emotions that connect us to other people at the core ignores the humanity of our interactions. Throughout this book, I reflect on the role of emotions during my fieldwork at various intense episodes: as I discuss talking with women who were dealing with the uncertainty of diagnosis, as I held the hand of a woman who I knew was likely going to die, as I sat bedside a twenty-seven-year-old-woman with advanced-stage cancer who I refused to believe would die and, more directly personal, as I navigated sexual harassment and my research thinking if I angered the well-established male doctor I could lose my research project.
As I explore in various relevant chapters, acknowledging my emotions was important for the observations and descriptions that I analyzed and reflected on in the act of writing this book. This process of introspection has provided methodological clarity as well. The psychological practice of sitting with our emotions and analyzing them before acting has important implications for our daily lives, including the way we go about our lives in “the field,” as we are prone to calling it. As researchers we may not pay enough attention to the fact that we are emotionally reacting to and in concert with the people we study. These internal observations affect the external ones that we weigh so heavily. It makes sense then that we include them as integral to our research and writing. Although my fieldwork in oncology hospitals with women diagnosed (and potentially diagnosed) with cancer may be thought of as more connected to emotion and empathy than other fieldwork unrelated to health, life, or death, the desire for human connection is a part of all types of fieldwork. It is an obvious and notable gap that we do not discuss the emotional aspect of our work, given that what psychologically healthy human beings most desire from one another—and a fundamental aspect of our behavior—is social connection (Lieberman 2013). We may feel joy, pain, grief, fear, loneliness, embarrassment, and other emotions as we spend weeks, months, and years connecting with others in our ethnographic fieldwork.
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