Introduction: Human rights and global health special issue

ABSTRACT

The emergence of the field of health and human rights during the closing decades of the twentieth century offered the promise of an important shift of perspective within global health. It has been increasingly questioned, however, to what extent the health and human rights framework has indeed succeeded in ushering in a new era of global health governance and justice, as the topic has remained marginalised, marked by regional inequalities, and often dominated by legalist visions and global North perspectives. The articles and commentaries in this special issue seek to create a space where a number of other perspectives and voices can be part of the discussion. They add new perspectives and offer roadmaps for how to rewire the ways in which knowledge is constructed and relationships are formed in the field of health and human rights. In doing so, they present important possibilities for how to build a more just and egalitarian field.

KEYWORDS:

• Human rights
• global health
• health justice
• public health
• collective health

The relationship between global health and human rights is long and complex. At some level, it can be seen as having been problematised since the very earliest historical roots of the field, associated with the development of ‘tropical medicine’ in the late-nineteenth century. Precisely because tropical medicine was a product of what has been described as ‘the age of empire’ (Hobsbawm, 1987) – a product of the colonial encounter between Western imperial powers and the people and places that they colonised – the field has always been built around fundamental inequalities and power differentials (Anderson, 2006; Brown, 1976; Fisher, 1978; Packard, 2016). Thinking critically about power and inequality, and their relationship to health and illness, was therefore a fundamental challenge even before the notion of human rights had been articulated as a means of confronting the inequities that have been present as part of the earliest attempts to think about health on a worldwide scale.

These issues began to be conceptualised and articulated far more clearly as the field of ‘international health’ was invented at the end of World War II (Packard, 2016). In the ruins left at the end of the War, it is hardly a historical accident that both the adoption of the Universal Declaration of Human Rights and the creation of the World Health Organization took place in the same year, 1948, signalling the potential development of new tools and institutional spaces through which health inequities on a worldwide scale might be addressed. But once again, geopolitical tensions – and especially the wars of independence and the break-up of colonial empires together with the decades-long struggles of the Cold War – created deep barriers to truly realising aspirational goals such as health for all by the year 2000 (Cueto et al., 2019; Packard, 2016). Indeed, important analyses of the history of human rights have suggested that it was only in the 1970s and the 1980s, during the waning years of the Cold War, that human rights began to take on their contemporary meaning as a political force (Moyn, 2010).

It was precisely during this period that the field of international health began to give way to what would ultimately come to be defined as ‘global health’ starting in the late-1980s and the early-1990s (Brown et al., 2006; Packard, 2016). The newly emerging AIDS pandemic had much to do both with the invention of global health (Brandt, 2013) as well as with the self-conscious articulation of human rights as a framework capable of addressing inequities in health and mobilising health-related social movements to combat stigma, prejudice and discrimination (Aggleton & Parker, 2002; Maluwa et al., 2002; Mann, 1994; Parker & Aggleton, 2003). Similar developments could be seen as well in the field of population studies, as critiques developed above all by the feminist movement pushed in the direction of rethinking an earlier focus on population control and creating a new emphasis on reproductive and sexual health and rights (Corrêa, 1997; Lane, 1994; Petchesky, 1995). Byy the late-1990s, treatment access activists focusing on HIV and related health challenges had also acheived major victories by articulating access to medications as a fundamental human rights issue (Altman, 2000; Parker, 2010; Youde, 2009). Indeed, more than ever before, the 1990s could be seen as the decade when the field of health and human rights came of age as both a full-fledged area of academic specialisation and a powerful force motivating social movement mobilisation around struggles for health equity (Grodin et al., 2013; Hunt, 2016; Meier & Gostin, 2018).

Over the course of the 2000s and the 2010s, this growing field of health and human rights has grown in important ways. But it has for the most part taken shape at the periphery of the mainstream of global health rather than at its centre. Especially in the global North, it has tended to be seen as less relevant than more technical approaches. Even in topical areas where it once played an important role, such as the response to HIV and AIDS, it has tended to be marginalised by a growing focus on the biomedicalisation of the field (Aggleton & Parker, 2015; Kenworthy et al., 2018; Moyer, 2015). Once considered central, human rights have all too often been given little more than lip-service, and over the past decade, they have almost completely fallen out of the most important indicators of success (Kenworthy et al., 2018; Kippax & Stephenson, 2016). And while health and human rights and health and social justice have been seen as especially important issues in at least some public or collective health traditions in the global South (Borde & Hernández, 2019; Krieger, 2003; London, 2007, 2008; London & Schneider, 2012; Vasquez et al., 2019), public health researchers and practitioners from the global North have often appeared to be largely unaware of (and sometimes even uninterested in) epistemological, theoretical and empirical research traditions from the South (Connell, 2007; Santos, 2016; Santos & Meneses, 2019).

The Covid-19 pandemic laid bare the continued unequal and exploitative nature of relationships between the global North and the global South (Khosla & Gruskin, 2021; Parker & Ferraz, 2021). As Fofana notes in her critical analysis of Africa’s place in global discourses and actions surrounding the pandemic, it also exposed ‘the persistent influences of colonialism and coloniality in the field of global health’ (Fofana, 2021, p. 1155). The profoundly unequal roll-out of the global Covid-19 vaccine strategy and innumerous problems with Covax are perhaps most emblematic of these continued limitations. Despite widespread mobilisation and publications by some of the most respected global health organisations and institutions with proposals for global health legal frameworks and policy paths for more equitable distribution (for a couple of examples, see Amri & Logan, 2021; Beyrer et al., 2021; Gostin et al., 2020; Sekalala et al., 2021), based on the data as reported in the New York Times vaccine tracker (https://www.nytimes.com/interactive/2021/world/covid-vaccinations-tracker.html) as of mid-September of 2022, only 23% of the population of low-income countries has received at least one dose of a vaccine, compared with 82% of high- and upper-middle-income countries. Even among the most vulnerable populations in these countries the numbers are not much better; the World Health Organization’s July 2022 report found that only 28% of older populations and 37% of health workers in low-income countries had been vaccinated (WHO, 2022). Sadly, as has now been well documented both in academic research and in investigative journalism, the important advances achieved by a health and human rights perspective in relation to treatment access over the past three decades (Kapczynski, 2019; Wolff, 2012) have been largely undercut and abandoned in the response to Covid-19,with the active collaboration of many of the most important actors in the neoliberal governance structures that currently dominate the mainstream field of global health (Altindis, 2022; Banco et al., 2022; Fofana, 2021; Rimmer, 2022; Zaitchik, 2021).

The context of the crisis that the Covid-19 pandemic both uncovered and helped to create is thus an ideal time work towards bringing human rights back from the margins to the centre of the political debate in the field of global health. This must, however, be more than just a global North or legalistic vision of human rights; it must recognise that the same broader economic and political processes that hampered the achievement of a more equitable global health system over the past three decades have also seriously impaired gains in the field of health and human rights (Flores, 2009). It must also be attentive to other voices, the historical remnants of colonialism and the normatisation of hierarchies that marginalise voices, knowledge and epistemological visions that fall outside of the dominant, European and North American centred paradigms of global health and human rights (Pires, 2016).

The collection of articles and commentaries in this special issue seeks to contribute to this process by creating a space where a number of other perspectives and voices can be part of the discussion – especially (though not exclusively) - people who are working at the intersection of the social sciences, public (or, in Latin America, collective) health, human rights and contemporary global health research and practice. We see the contributions as adding new reflections and perspectives capable of offering visions of how to build the field of global health as a fairer and more egalitarian field, and at the same time, examine the potential for thinking, action and interaction of the field of human rights with that of global health. The articles are situated in the articulation between research and analysis in social and human sciences, international relations, human rights, population studies and public health. While the majority are written from the Latin American context where we are both based, they each situate their analyses historically within international health and human rights frameworks.

All of the articles address how epistemological, social and political challenges linked to the global health agenda are not restricted to biomedical knowledge or related strictly to disease and care practices, but rather involve specific aspects and knowledge about social, political, economic, cultural and environmental conditions, and the very definition of health as a human right. José Ricardo Ayres examines the challenges and possibilities of incorporating a human rights perspective into the construction of knowledge in the field of health. In looking at the tensions between the construction of technical knowledge and daily practices in the fields of medicine and health more broadly, in addition to the potential of human rights frameworks for interpreting the meaning of health, Aryes points out how hermeneutics offers a way to link the normative character of health to the practical issues and dimensions of human rights.

In looking at the relationship between science, health and human rights, Kenneth Camargo explores the challenges of a critical approach to science in a ‘post-truth world’, asking how we can effectively democratise science without opening it up to the deliberate manipulations that have been increasingly present in the production of misinformation, widespread conspiracy theories and denialism, especially in the context of the Covid-19 pandemic. Camargo also reinforces the importance of strengthening bridges between general audiences and fields of scientific knowledge, both to increase understanding and keep science ‘in check’. Indeed, as Perez-Brumer and Silva-Santisteban point out, the Peru ‘vaccinegate’ scandal showed that there are good reasons to be concerned about how science is conducted during a pandemic. They note that the lack of clearer guidelines for emergency and conditional uses of vaccines in clinical trials and guarantees of rights-based access post clinical trials opened doors for corruption and continued abuses by those in spaces of academic and political privilege in global health science. They note that the outrage around vaccinegate, while justified, also served to further reduce public trust in vaccines, the public health system and science – shifting the debate to one about corruption rather than the need for drastic improvements in public health infrastructure and the cruelty of what has been called ‘vaccine nationalism’ (Kahn, 2020).

Profound limitations in public health infrastructure coupled by intentional negligence and necropolitics (Mbembé, 2003) of what has been frequently termed as the genocide of Brazil’s indigenous communities in the Amazon form the backdrop of Jose Miguel de Olivar, Dulce Meire Mendes Morais, Elizângela da Silva Costa, Francinéia Fontes, Michel Furquim, Bruno Ribeiro Marques and Flávia Melo’s article. Highlighting the activism of indigenous women in the northwest region of the Brazilian Amazon region who developed the campaign, ‘Rio Negro, We Care’, the authors – who were directly involved and implicated in the campaign – note that an effective response is one guided by a complete reorientation of the dominant scientific-political regime (that prioritises ideas such as ‘unification’ and ‘universalization’) towards an indigenous cosmopolitics (Stengers, 2018). Such a vision favours plurality and multiplicity and a form of ‘care’ that rather than medical or technical, is a collective arrangement of organisations and state actors mobilised by their connections to common fights.

Pedro Cunca Bocayuva, also writing from the context of the ‘humanitarian catastrophe’ in Brazil during the pandemic, focuses attention on the favelas of Rio de Janeiro and the intense mobilisations of communities in the face of government neglect and State violence. He details the project, Covid-19 in the Favelas, an initiative that brought academic, public health and social movements in five of Rio de Janeiro largest favelas together, and eventually gained financial and organisational support from the Rio de Janeiro State Legislature. Connecting the right to life to the right to the city, and actions that move from the periphery to the centre rather than vice versa, he calls attention to the importance of considering spatial dimensions and embodied collectivities as central to any effort to produce sustainable and healthy urban territories.

Francisco Ortega and Manuela Rodrigues Müller turn much needed attention to the field of mental health and human rights. They point to the ways in which calls to protect the human rights of people living with mental illness in Global Mental Health often is focused on individual, as opposed to community rights, prioritising western concepts of autonomy and treatments. The Brazilian psychiatric reform movement, on the other hand, grew alongside the country’s sanitary reform movement and as such heavily focused on community and intersectoral care strategies firmly grounded in human rights language, social participation and collective rights. Ortega and Müller compare this activism with the strategies used by associations of families of individuals living with autism and ADHD in Brazil who have largely chosen to pursue individual rights and advocate to define the conditions as disabilities as a way to expand access to specialised services; a strategy that relies heavily on the country’s judicial system to guarantee mental health care.

Miriam Ventura, Luciana Simas and Luiza Lena Bastos delve into Brazilian judicial system exploring the intersections between the right to health and access to justice in the context of claims made at the Rio de Janeiro State Department of Health’s Dispute Resolution centre. In their analysis of interviews conducted with claimants, they found persistent barriers and failures of both the health and judicial systems. At the same time, interviewees expressed a strong sense and knowledge of their rights to health and responsibility of the state to provide access and quality care to them, indicating a strong disconnect between what is stipulated in law and what happens in practice.

Five of the articles focus on gender, sexuality, health and human rights, making connections between intense international and national spheres of activism and the challenges of guaranteeing hard won rights as waves of conservatism in politics and the (re)medicalisation of public health programmes have led to staggering setbacks on national and local levels. Simone Diniz and Cristiane Cabral trace the women’s health movement activism in Brazil from the 1980s, noting how advancements in conceptualising women’s health from the perspective of integrality – in which women’s health was not synonymous with reproductive organs – became less and less central to health programmes as policies became increasingly guided by neoliberal trends favouring individual, as opposed to social and intersectional frameworks, for reproductive rights. In her interview with Laura Murray, Sonia Corrêa provides a historical and transnational perspective on the connections between advancements in reproductive rights at the Cairo International Conference for Population Development (1994) and Beijing World Conference on Women (1995) and the emergence of anti-gender politics. In her overview of the genealogy and ramifications of anti-gender politics, she provides a critical analysis of their geopolitical connections and the disastrous effects they’ve had on sexual, reproductive and social rights.

Kseniya Kirichenko and Agnieszka Król also turn their attention to United Nations conventions, looking specifically at the Convention on the Rights of Persons with Disabilities (CRPD) and Committee on the Rights of Persons with Disabilities (CteeRPD), which monitors the Convention. As people that are actively engaged in the international human rights networks, they apply a queer intersectional approach to analyse to what extent the LGBTI subject and rights had emerged, or not, as a priority in the Convention’s discourses. While they note important advancements – largely due to civil society engagement – they also conclude that much still needs to be done to queer disability rights in international law and point to questioning the processes through which the law marginalises certain bodies and minds as a place to start.

Laura Murray, Mauro Brigeiro and Simone Monteiro document advances in the discursive fields of human rights and HIV prevention with sex workers in the late 2000s and early 2010s, noting how unfortunately there have been few concrete initiatives advancing the kinds of structural and political changes endorsed by the international sex worker movement and some international agencies. Using Brazil as a case study, they note the ambiguous and often paradoxical nature of sex workers’ place in HIV prevention: on the one hand, sex workers are listed as priority groups for biomedical interventions yet largely left out of such focused interventions and research projects. On the other, large research projects that have been conducted concur that structural approaches such as decriminalisation and stigma reduction are key to preventing HIV, yet there is comparatively much less investment in these types of interventions. Similar to the other articles drawing on Brazilian case studies in this special issue, they highlight the dire consequences of the combination of moral crusades and neoliberal economic policies that characterize contemporary conservative politics, noting the urgent need for more active dialogue and engagement between social movements and the State.

Mary Ellsberg, Margarita Quintanilla and William Ugate trace decades of the women’s movement activism and the role of feminist research in contributing to shifting public opinion and laws in Nicaragua around violence against women. In comparing a series of previous studies, they found that women’s acceptance of IPV decreased sharply and that television and activist campaigns produced to address gender issues and violence against women had a far reach. The combined results present compelling evidence for the importance of social movements and State-Civil Society partnerships to reduce violence against women. Sadly, the results came on the eve of increases of extreme State violence and political and economic crises in Nicaragua, which, as the authors report, has made the continuation of this work increasingly difficult, if not impossible.

Taken together, the articles in this special issue make a compelling case of both the extreme importance and fragile nature of the relationship between human rights and health. In each context, the authors detail how health claims mobilised social movements and an international political agenda that linked health to democratic demands for citizenship, social justice and human rights. At the same time, writing in the throes of the Covid-19 pandemic, the authors document substantial gains that have been systematically and violently attacked – or simply forgotten, which is itself perhaps a form of symbolic violence (Santos, 2000; Seffner & Parker, 2016) – in recent years. They thus also make explicit how the health of individuals, populations and the environment reflect the inequalities and social injustices perpetrated by political, economic, and cultural practices of domination that have come to define many aspects of the contemporary landscape. We end thus turning to the histories of the social movements highlighted in this special issue, that in the face of great challenges and extreme injustices trailblazed new ways to face inequalities of power and creatively mobilised resources to construct greater equity, solidarity and emancipatory epistemologies. We turn to them, however, not for inspiration, but rather as concrete roadmaps for how to rewire the very ways in which knowledge is constructed and relationships are formed in the field of health and human rights. This, it appears to us, is the only way to truly shift the paradigm for both global health and human rights.

Acknowledgements

We would like to thank all of the authors for their important work and valuable contributions to this special issue. We would also like to thank the participants in the ‘International Seminar on Global Health and Human Rights: Critical Perspective on the Construction of the Field’ for their presentations and insightful discussions which greatly influenced the development of the special issue. The Seminar was held in Rio de Janeiro in November 2019 and organised in collaboration with the Laboratório Interdisciplinar de Direitos Humanos e Saúde, Instituto de Estudos em Saúde Coletiva, Universidade Federal do Rio de Janeiro (Interdisciplinary Laboratory for Human Rights and Health, Institute for the Study of Collective Health, Federal University of Rio de Janeiro) and the Associação Brasileira Interdisciplinar de AIDS (Brazilian Interdisciplinary AIDS Association), with support provided by the Brazilian Conselho Nacional de Desenvolvimento Científico e Tecnológico-CNPq (Brazilian National Council for Scientific and Technological Development), Call for Proposals ARC n° 06/2018 L2, Process 403561/2018-3. Special thanks to Carla Rocha Pereira, Miriam Ventura, and Simone Lima for their help and support in the organisation of this project.