Engaging with the Right to Health: Ethnographic Explorations of the Right to Health in Practice

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Over the past 25 years, right to health legislation and policies have gained prominence in health systems around the world. Following the 1948 Universal Declaration of Human Rights and the Constitution of the World Health Organization (WHO), as well as the International Conference on Primary Health Care that led to the Declaration of Alma Ata in 1978, right to health language began to appear in national constitutions and in specific health-care policies and programs in response to local and global concerns around health inequalities. However, serious questions remain about how right to health principles should be implemented, the potential effects of such implementation, and whether governments can guarantee the right to health through legal mechanisms.

While promoters of the right to health have noted its ability to confer access to affordable health services and health-care equality among citizens, skeptics have questioned the emancipatory potential of rights-based approaches to health, given their parallel implementation within a global neoliberal agenda that places pressure on governments to transfer responsibility for health-care provision to the private sector. Alongside this history that interweaves local and global health policies, scholars have recognized that right to health principles are also immersed in philosophical, political and legal discussions about the nature of human rights and the international regimes built around them. Such discussions involve unfinished debates about the universality of human rights, the place of the sovereign state in an international regime, and the legal and political standing of “second generation” (social, economic and cultural) and “third generation” (collective and environmental) human rights.

Scholars and practitioners looking at the right to health from legal, public health or health systems perspectives have documented its implementation in different contexts, and have debated its effectiveness in improving health outcomes in contexts where health expenditures compete with other societal priorities (Grodin et al. 2013). These debates are immersed in broader, long-standing discussions of whether and how human rights principles can be used to mitigate the effects of capitalism within the modern nation-state (Collier 2001; Marx 1884; Moyn 2010). At the heart of these discussions is a deeper question about who the “human” is in human rights. Whether this “human” is found in the multitude, the people, the refugee, the citizen, the passive subject, or the political subject, is itself shaped by conceptualizations of how the social and the political are articulated.

Karl Marx, for example, understood human rights as being “the rights of egoistic man, of man separated from other men and from community” because rights separated the citizen from the human (Marx 1884:16). Arendt (1979) foresaw a paradoxical consequence of human rights: that they can only materialize through the state apparatus, which institutionalizes collective aspirations for equality, and which leads to the loss of human rights when those institutions begin to see individuals as homogeneous subjects. Agamben (1996, 1998) takes Marx’s and Arendt’s critiques of human rights further, to argue that modern nation-states need to constantly redefine the limits between political and social life, between citizen and human, and between life and death; they ultimately do so through three types of power – sovereignty, discipline, and government – that function simultaneously and interdependently. Finally, Rancière (2004) and Žižek (2005) argue that it is precisely the definition of the limits between political and social life that politics is about, and therefore the definition of the contents of human rights, as well as the “human” in human rights, need to be constantly renegotiated. In response, anthropologists have consistently argued that these debates need to be illuminated by ethnographic investigations of human rights in practice (Goodale 2007; Goodale and Merry 2007; Wilson 2006, 2007).

Medical anthropologists looking at the right to health in practice have highlighted the importance of looking at the state mechanisms to determine what is included in and who is deserving of human rights, and they invite us to pay attention to the specific dynamics between national and supranational, state and non-state actors involved in configuring the right to health. Farmer (2005) has argued that human rights advocates need to embrace practical and technical public health solutions if they want to address the urgent human rights crises they are concerned about. He has insisted that health and human rights shape each other through structural violence, which is why poor and marginalized people worldwide are most often subject to human rights violations and health inequalities. Didier Fassin has stressed the institutionalized power relations implicit in right to health calculations condensed in the concepts of biopolitics and biolegitimacy (Fassin 2009, 2011). These conceptions point to how human rights are implemented through state institutions that make political or moral decisions about whose rights are to be fulfilled, a practice that has itself been illuminated by the work of Sarah Willen and her concept of deservingness (Willen 2011). Comaroff (2006) warns against the reification of the notion of state as a sovereign who decides who lives and who dies, and reminds us of the importance of the institutional and political context that shapes and is shaped by notions of rights and health. To emphasize the different worth given to different people in relation to the right to health, anthropologists have also introduced the notions of biological citizenship (Petryna 2002) and pharmaceutical citizenship (Ecks 2005). The pharmaceuticalization of the right to health has been documented (Biehl 2013; Biehl et al. 2012) when medicalized notions of health are addressed through the judicialization of a constitutional right to health. Implementation of right to health policies has shown tensions between public health aspirations, privatization of health care, and social exclusion in the context of health sector reforms (Abadía-Barrero 2015; Abadía-Barrero and Bugbee 2019; Cerón 2018; Jerome 2015).

Against this background, we offer ethnographic examples to explore how right to health as policy, principle, and practice is evolving within specific health systems around the world, and to interrogate the utility of the concept of the right to health as a theory, a legal tool and a platform for social action. The contributing authors examine the relationship between global and local health policy and various interpretations of the right to health in the context of particular health-care systems. All authors pay particular attention to the modes of governance within which the right to health operates, and to how the practice of right to health may strengthen notions of individualization, commodification, and judicialization of health and health care, while also increasing civil society’s ability to carry on social initiatives. Taken together, the authors illustrate the importance of ethnographic research on the practice of the right to health around the world, by demonstrating that the right to health operates as a flexible and mobilizing metaphor in a wide range of settings and used by different actors for diverse goals.

The articles by Lucia Guerra-Reyes, Priscilla Magrath, and Lynn M. Morgan examine the importance and role of a constitutional right to health when using litigation or health policy to redefine and make concrete the right to health. One of the unintended consequences of such work has been the increased the focus on evidence production, accountability and the use of numerical targets. For example, Magrath shows how Indonesia’s government implementation of health policies portrayed as fulfilling the right to health through the development of partnerships between biomedical health-care workers and traditional midwives fail to address long-standing inequities between the two types of practitioners. Moreover, the right to health is understood by government officials in charge of its implementation as aiming at improving the utilization of biomedical services, despite women’s preference for home birth and traditional midwives. An analogous paradox is presented by Guerra-Reyes, who dissects the implementation of public health policies aimed at improving maternal health among indigenous women in Peru through strategies described as culturally appropriate. These strategies were developed on the assumption that maternal deaths would decrease if more indigenous women gave birth in institutional settings such as clinics and hospitals, and therefore health-care providers were evaluated on the basis of the percentage of women who gave birth in such facilities. As a result, health-care providers with an eloquent discourse about respect for cultural preferences as a component of women’s right to health would simultaneously withdraw food aid and cash transfers to coerce women to give birth in hospitals and clinics. The right to health in both Indonesia and Peru thus reproduces existing inequalities and justify measures that increase social exclusion.

Morgan’s article points to a different type of paradox. Costa Rica has been upheld as a health system that promotes universal health coverage, and for having a strong record of promoting, protecting and fulfilling human rights. This reputation derives from the overturning in 2012 of a decision of the Costa Rican Constitutional Court in 2000 to ban in-vitro fertilization, citing the inviolability of life from its conception; its overturning by the Inter-American Court of Human Rights was based on the violation of several human rights, including that of women’s right to health. While this case illustrated the legal contestation of human rights, Morgan shows that the debates are rooted in complex transnational ideological struggles about sexual and reproductive rights, and political economic disputes over trade liberalization.

The articles by Jennifer J. Carroll, Elizabeth Farfán-Santos, and Jessica Jerome examine the effects of local political cultures on the willingness and ability of institutions to pursue the principles of the right to health. Carroll describes how the Russian occupation of Crimea led to administrative measures aimed at banning medication-assisted treatment programs for patients with opioid use disorder. The administrators’ primary motivation for dismantling the programs was to assert Russian sovereignty over the occupied territory by distancing themselves from programs supported by Europe; in the void left by the programs removal, users’ health rapidly deteriorated. The Costa Rican and the Crimean cases show how local health-care rights are shaped by larger transnational political, economic and ideological disputes that are often neither about health nor rights.

Farfán-Santos presents the experience of an undocumented Mexican mother, Marta, in Texas’ health-care system. Immersed in an environment of political exclusion and social alienation that makes her feel under constant threat of detention for her immigration status (Klein 2017, 2019), Marta manages to advocate for herself and her children while navigating a constellation of constantly changing governmental and non-governmental programs. Through her experience, Marta has embodied a habitus shaped by resilience and strain with which she reckons threats and opportunities for herself and her family. In contrast, Jerome uses archival evidence to document the emergence of free health-care clinics in Chicago in the late 1960s, as well as their subsequent removal and replacement by Federally Qualified Health Centers by the city’s Board of Health. By highlighting the stark contrast between Chicago’s free health centers of the 1960s and the health-care services offered by contemporary Federally Qualified Health Centers, Jerome reveals the impact that the gradual shift in the U.S. health-care safety net from guaranteeing a right to health to merely expanding access to health care has had on low-income urban residents’ experience of health care as well as on our conceptualization of health care as a technical rather than a political problem.

Taken together these articles do not suggest a monolithic direction towards which health-care rights around the world are headed, nor do they offer a uniformly progressive or conservative assessment of their implementation. Rather, they attest to the importance of viewing the right to health as a set of practices: juridical, economic, political and cultural that shape the flow of health-care resources to particular persons and social groups. The emphasis the authors in this volume grant to practice helps us to understand health-care rights as dynamic social constructions, which change over time as a result of social and political struggle. As editors, we urge anthropologists to continue their investigations and documentations of the specific ways in which health-care rights are implemented, and the many unintended consequences of their application. The right to health, along with models such as Primary Health Care and Universal health Care is a potent ideology of health that continues to be contested and reframed as it is applied throughout the world. Anthropologists are ideally situated to question the received categories from which these concepts spring, examine their underlying assumptions, and document the diverse effects of their implementation.

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Notes on contributors

Alejandro Cerón

Alejandro Cerón is assistant professor of Anthropology at the University of Denver. He is interested in the social and cultural aspects of health, and his research explores the intersections of health systems, sociocultural epidemiology, public health practice, and the right to health.

Jessica Jerome

Jessica Jerome is associate professor of Health Sciences at DePaul University. Her research documents the impact of right to health legislation on the experiences and health care outcomes of low-income urban residents in Brazil and the United States. She is the author of A Right to Health: Medicine, Marginality and Health Care Reform in Northeastern Brazil (2015).