An Uncertain Cure: Living with Leprosy in Brazil
Rutgers University Press, 2009
US $23.95 (Paperback)
Reviewed by Lauren Schleicher, Wayne State University
An Uncertain Cure: Living with Leprosy in Brazil by Cassandra White is a thoughtful and well-detailed exploration of the possible reasons for the existence and continued spread of leprosy in Rio de Janeiro, which follows in the vein of earlier work by Paul Farmer and João Biehl. A highly stigmatized disease, leprosy has decreased in prevalence over the last twenty-five years due to the development and availability of multidrug therapies, however, the disease persists in places with large numbers of socially, economically, and politically marginalized people. In her ethnographic study, White draws connections between historical and contemporary factors associated with poverty that contribute to the continued spread of leprosy. Like many anthropologists who study the spread of infectious diseases White examines how structural inequalities limit the agency of impoverished and lower-income Brazilians living in Rio who seek leprosy treatment in public health clinics. The book emphasizes the need for healthcare workers and the general public in both affluent and resource-poor countries, to increase the focus on early detection as a means of preventing the spread of chronic infectious diseases like leprosy.
White spent one year in Rio de Janeiro conducting her fieldwork. During that time, she focused her research on public health posts, MORHAN (a non-governmental organization dedicated to the elimination of Hansen’s Disease [leprosy]), former leprosariums, public schools, and favela communities (shanty towns). The bulk of her work was conducted in referral centers where leprosy patients were being treated. Although originally interested in issues of treatment adherence, through participant observation at these centers and her discussions with healthcare professionals, White began to wonder if “treatment abandonment” adequately explained why leprosy continues to spread in Brazil. Thus White seems to tacitly agree with many critical anthropologists who argue that “noncompliance bestows an artificially inflated agency on populations who are making health care decisions in the tightly constrained context of extreme poverty,” (Greene, 2004). After seeing 144 patients and conducting 41 in-depth interviews, White hypothesized that late detection was more crucial to the spread of leprosy than non-compliance (White, 14).
During her research, White found that the leprosy patients she interviewed did not passively accept their disease or the suffering it caused. She noted that these patients “not only cared about getting better but were actively engaged in the process of returning to health” (White, 28). White draws on Bourdieu (1986) to argue that, “humans are capable of making individual choices and of taking action using the tools at their disposal or in some cases, seeking out new tools and ideas they can use for this purpose” (White, 27). However, like Paul Farmer (1999), she feels that a patient’s actions are limited by structural inequalities in their daily lives that restrict access to resources. For instance, White explores how the historical inequalities stemming from the colonization of Brazil by the Portuguese in the 1500s and the importation of African slaves not only introduced leprosy into the Brazilian population, but continues to contribute to the contemporary socioeconomic disparities that reduce the agency of low income Brazilians. Although many researchers have noted how poverty contributes to the spread of disease, poverty itself does not cause leprosy. Instead, White explains that leprosy continues to spread amongst Rio’s urban poor in spite of the development of multidrug therapy due to its association with certain types of living conditions and extreme maldistribution of wealth at the national level, delaying or altogether preventing treatment interventions. White asserts that despite misdiagnoses by clinicians, limited access to healthcare services, miscommunication with doctors who do not adequately explain leprosy reaction and possible medication side effects, as well as having to navigate local understandings of leprosy often leading to stigmatization, all of which contribute to delays in treatment, the patients she interviewed were not “passive agents in their health care” and actively sought to become well again (White, 131).
Overall, An Uncertain Cure is a unique contribution to the critical anthropological literature detailing the impact of social forces on the spread of infectious diseases, specifically in regards to the impoverished communities who are most affected. Although White’s research is entirely focused on leprosy in Brazil, her work is relevant to any circumstance where limited agency due to structural violence limits resources and eclipses citizens’ basic human rights. White, like Farmer, is clearly advocating for social change when she explains that, “we should all care about poverty and ill health in other countries because the people in those countries are not separate from ‘us,’ ” (White, 186). However, given that White’s sample population consisted almost entirely of patients in treatment for leprosy or leprosy reaction, the “illness narratives” she uses to represent “success stories,” which she argues offer insight into ways to improve “the leprosy experience for others in Brazil and elsewhere,” are somewhat limited (White, 150). Recently, João Biehl and Amy Moran-Thomas (2009) warned that “explicit evocation of personal narratives is part of a critical activists’ toolkit—all of which has powerful implications for public mobilization, but also limitations in terms of addressing singularity.” They ask, “what is the slippery trade-off of the representational strategy of idealizing lives and aggregating cases, and how do the sentiments that this strategy is designed to evoke fit into a larger idea of politics” (Biehl & Moran-Thomas, 2009)?
An Uncertain Cure offers a detailed analysis of leprosy as it affects poor communities in Rio de Janeiro. White admits that her research falls short of being a comprehensive study of leprosy in Brazil as her sample represents patients who were receiving treatment at the public health clinic. In spite of this, White is still able to show that the patients she interviewed were active agents in their efforts to regain their health, but that due to the contingencies of everyday life, treatment often fails. White concludes that efforts to control the spread of this disease must address the structural inequalities that limit the agency of the poor and contribute to delays in treatment—without this attention, leprosy, a curable disease, will continue to spread.
Biehl, J. & Moran-Thomas, A. (2009). Symptom: subjectivities, socials ills, technologies. Annual Review of Anthropology, 38: 267-288.
Farmer, P. (1999). Infections and inequalities: the modern plagues. Berkeley: University of California Press.
Greene, J. A. (2004). Therapeutic infidelities: ‘noncompliance’ enters the medical literature, 1955-1975. Social History of Medicine, 17(3): 327-343.