The idea that some lives matter less is the root of all that is wrong with the world.
—Paul Farmer1
As competent human beings, we cannot shirk the task of judging how things are and what needs to be done. As reflective creatures, we have the ability to contemplate the lives of others [and] the miseries that we see around us and that lie within our power to help remedy. . . . It is not so much a matter of having exact rules about how precisely we ought to behave, as of recognizing the relevance of our shared humanity in making the choices we face.
—Amartya Sen2
THERE ARE TUNNELS UNDER HARVARD LAW SCHOOL that connect the buildings and are lined with student lockers. Before she became a US Supreme Court justice, Dean Elena Kagan had begun to reimagine public space as part of transforming the experience of being at the Law School—not only adding better lighting and framed posters in the tunnels, but also a volleyball court that turned into an ice-skating rink in winter outside the student center.
But in September 1988, that was a long way off and the tunnels were grim. It was the first day of my first year, and I had retreated to this underground labyrinth to contemplate having been the first student called on by a visiting professor of contracts, who seemed to believe the purpose of the Socratic method was to humiliate as much as edify. A classmate, who on that first day had already established himself as someone to be looked up to, stopped by my locker and said, “Hey, you did great!” Seeing my dubiousness, he added with a broad smile, “No, really. . . . How’d you know ‘e.g.’ was short for ‘exempli gratia’ anyway?”
Over twenty-five years later, I watched that same classmate, Barack Obama, who by then had graying hair and furrowed brows, in Dallas as he delivered one in a long line of speeches he had had to give as the first African American president of the United States after mass shootings and murders of Black men by police. In this case, five police officers had been shot dead and nine others injured in Dallas, Texas, on July 7, 2016, at the very end of a peaceful Black Lives Matter protest.3 The shooter was a psychologically unstable Black former marine. Many politicians would have used the occasion to pander to fear. President Obama did not. In his speech in Dallas, he asked:
Can we see in each other a common humanity and a shared dignity, and recognize how our different experiences have shaped us? . . . [W]ith an open heart, we can learn to stand in each other’s shoes and look at the world through each other’s eyes. So that maybe the police officer sees his own son in that teenager with a hoodie [and] maybe the teenager will see in the police officer [his parents’ values].4
It was a magisterial speech, one that spoke to the aspiration of recognizing our diverse but equal humanity, which lies at the heart of deploying human rights for social transformation.
It was the kind of speech for which President Obama had become famous, the kind of speech that eight years earlier might even have made us believe in the possibility of a ‘post-racial America.’ But, looking back, Obama’s mobilization of policy did not match his mobilization of language; the structural drivers of race-based wealth, health, and education inequality had continued to grow unabated. Moreover, we had witnessed hundreds of shootings of Black Americans by the police, a seemingly endless tide of racially motivated violence against multiple groups of people of color, and the ferocity of racist hatred unleashed during the administration of Donald J. Trump. In retrospect, the ‘audacity’ of that hope came to seem cruelly naïve.
This book grew out of a critical reflection on a professional career spent pursuing the narrative behind Obama’s speech, not just or even primarily in the United States, but around the world: the narrative that all of us are capable of connecting to the otherness within ourselves, and in those around us, and of uniting around ideals of our shared humanity rather than reflexively recoiling in prejudice or fear. Advancing the right to health and economic, social, and cultural rights has entailed making space for not just racial otherness, but the otherness of gender, ethnicity, and the many other axes of our socially constructed identities. It has also meant confronting the challenges of advancing common human interests, such as defeating a pandemic and stemming climate change, posed by the profound social and economic inequalities that systematically foster indifference to the suffering of others.
An incantation to “look at the world through each other’s eyes” can of course produce a hollow tolerance from our own narrow perspectives. Empathy can easily become a way to congratulate ourselves for feeling the sorrows of the world. Or it can become a performative gesture if it is not accompanied by creating the structural conditions that enable diverse people to be treated as equals under law and in practice. For example, white supremacy in the United States is not a matter of individual racist attitudes or even subconscious biases; it is imbricated in every institution in our society. Moreover, dismantling white supremacy requires relinquishing the privileges of whiteness just as much as recognizing the rights of people of color. The same applies globally: the remedy for the raging neocolonialism in global health that the pandemic has laid bare about vaccines and beyond is not charity—it is structural reform and reparative justice.
If taken seriously, however, the idea that we as individuals, our democracies, and our world are enlarged by dialogue among equals with differing views and life experiences has radical transformative potential. Genuinely seeing the dignity in the other, ascribing the other with our own human qualities—and conversely ascribing what we see as their human qualities to ourselves—is the basis of all human rights, both in relation to health and more generally.
It was in many ways during my time at Harvard Law School in the late 1980s and early 1990s that great expectations for the potential role of international human rights rose to prominence on the world stage. The idea of international human rights was exploding—in the news media and as a scholarly field. Although in 1989 the Chinese regime acted with swift repression to put down the protests in Tiananmen Square, later that year we all sat glued to our televisions watching the Berlin Wall fall and Nelson Mandela walk free from Victor Verster Prison in 1990. These events not only shattered assumptions about the global political order but also opened apparent possibilities for purposefully expanding the use of an international legal framework that aspired to promote greater justice in the world.
The world was changing before our eyes, and it seemed possible that we could develop human rights law in disruptive ways to combat deeply rooted social and economic injustices, which many of us had until then protested through the politics of the street. When the Gulf War broke out in the spring of 1991, a group of friends and classmates created the International Study Team on the Gulf Crisis to assess the impacts of the US invasion on civilians using an explicit human rights framework, weaving together legal, public health, and social science expertise to document the resulting deprivations of water, food, sanitation, and healthcare access in terms of economic and social rights.5 That study team became the Center for Economic and Social Rights (CESR) in 1993, which I went on to contribute to through reports, fact-finding delegations, and then through serving on the board, eventually as vice president (2001–2008) and as president (2009–2015) succeeding Philip Alston. At the time, virtually all international human rights scholars and organizations were focused on civil and political (CP) rights, such as freeing political prisoners and exposing abuses. Economic, social, and cultural (ESC) rights were derided if not dismissed by the Northern-dominated international human rights movement. Some of us—at the time, primarily advocates from the global South—nonetheless insisted that the promises of the Universal Declaration of Human Rights could only be achieved if human rights norms, institutions, and procedures were deployed to regulate economic inequality and deprivation, just as the expansion of suffrage and other civil rights had diffused political power.
Over the decades since the fall of the Berlin Wall, those of us who have dedicated ourselves to advancing ESC rights have faced at least three challenges in scholarship and advocacy.6 First, we would have to subvert entrenched ideas about rights: notions that ESC rights were not enforceable legal rights, but mere programmatic aspirations. In health, doing so required changing formal legal norms, but also reconceptualizing causal responsibility for patterns in social determinants of health as well as access to care. Second, we had to articulate what it would mean to take ESC rights seriously in laws and practices. A right to health is not a right to be healthy. But it is not at all obvious what shifts conceptualizing health as a right implies across different contexts in terms of policy and legal frameworks, let alone national health strategies and budgets, program design and appropriate remedies for non-compliance. Finally, we sought to demonstrate that applying rights in health could contribute to fostering greater egalitarianism in our societies, and world.
This book is an account of facing those evolving challenges over the last few decades, with respect to health-related rights in particular. It is a reflection on the extent to which coming to apply a human rights framework to health, and ill-health, was able to convert a narrative of “misfortune to be endured” to one of “injustice to be remedied.”7 Multiple assessments of international human rights have been written in recent years, both by avowed skeptics and by cheerleaders. This is, however, an insider’s account of a particular aspect of the human rights story—applying human rights to global health—in which I conclude there is indeed “evidence for hope” but, as exposed by the ravages of the pandemic, “not enough.”8
In a previous book, Power, Suffering, and the Struggle for Dignity: Human Rights Frameworks for Health and Why They Matter (hereafter referred to as Power and Suffering), as well as in other writing, I have suggested that a transformative engagement between health and human rights requires critically rethinking conventional approaches to both human rights and public health.9 In many ways, this book is the continuation of my thinking in Power and Suffering. Accounts of the evolution of HIV/AIDS, sexual and reproductive health, and other topics into rights issues have addressed pieces of the narrative from different country or disciplinary perspectives. We are missing some of the most significant features of the story of creating health as a matter of rights. These most revealing, and often most challenging and frustrating, parts of the narrative lie precisely in the points of intersection and friction between different fields—law, medicine, and health; human rights and economics—and between their methods and epistemic models.
Further, this account tracks the recursive relationships between “lived experience” of health-related rights and the evolution of development frameworks and legal norms—and how these synergies and dissonances evolved over time. Among many other things, we saw during the pandemic that some of the carefully constructed normative edifices in international law crumbled like sandcastles when the first waves of COVID-19 hit. Thus, this book fills in some of the many gaps in this complex history and does so in a way that enables extracting lessons about using human rights critically for progressive social change in health and beyond.
While many examples are drawn from women’s health, which is the path I have walked, there is a larger point. The recognition of a specific population’s rights implies a reconfiguration of what it means to assert dignity claims and who is considered an equal member of the political community. Take marriage, for example: if same-sex couples can marry and receive all of the attendant legal benefits, this redefines what the institution of marriage means for everyone. Likewise, if the health needs of women with intersectional identities are integral to the right to health, this changes the design of health systems for everyone. A truly subversive struggle for health and other rights should be profoundly destabilizing to the status quo, which requires more than invoking the protected status of an ever-growing list of categories of persons. Rather, it continually calls upon us to think harder about challenging the interlocking structures of power—racial supremacy, patriarchy, biomedicine, economic constructs—that shape our social institutions and assign differential value to categories of humans.
My central argument is two-fold. On the one hand, normative and institutional evolution has been extraordinary in health and other ESC rights and has over these decades advanced efforts to curb traditional forms of tyranny and discrimination, as well as to create new discourses of equality, the purposes of the welfare state, and the boundaries of inclusive democracies. Many of these advances indeed have been forged in women’s health rights and sexual and reproductive health and rights (SRHR), which have expanded understandings of rights, the porousness of the border between the public and private spheres, and how societal power structures influence health for everyone.
Further, although the pandemic revealed the precarity of many advances, human rights conceptualization and advocacy have not only achieved normative and rhetorical change, as some critics claim. The application of human rights in health has also been crucial to saving actual lives, from HIV to maternal mortality to mental health; improving health outcomes, conditions, and care; enhancing dignity and equality; and easing burdens of stigma and discrimination in practice. Indeed, many places that fared relatively well in terms of trust in government, equity, and social cohesion during the pandemic, including very low-income settings such as Kerala, India, reflect wide implementation of human rights principles in policies, public discourses, and institutional practices, including commitments to gender equity and social solidarity.
On the other hand, even as we advanced new understandings of who could participate as full members of society and what equal enjoyment of health rights meant in practice, the possibilities and political space necessary to advance a robustly egalitarian health rights agenda were shrinking. That is, just as health and other ESC rights claims were being theorized and articulated, in international instruments and reformed constitutions, the potential for democratic responses to those claims was being crippled by the global embrace of neoliberalism, which encoded a series of free market-oriented reforms designed to reduce state influence in economies. From the late 1970s onward, we have seen the effects of ever-deepening inequality within and between countries; the hollowing out of safety nets and social institutions, including health and education systems; the increasing gap in life chances and choices between waged laborers and the masters of capital markets; and the failures of public and multilateral institutions to address global crises such as conflict, forced displacement, and climate change.
As public resources were privatized for personal gain, growth in private capital outpaced growth in public capital, concentrating power in the top echelons of society and distorting political agendas across the world. After decades of these tendencies, the institutionalized social order that the pandemic struck was characterized by a “deeply predatory and unstable form of social organization that [had liberated] capital accumulation from the very constraints (political, ecological, social, moral) needed to sustain it over time.”10 Just before COVID-19 erupted, Oxfam announced that 2,000 billionaires owned as much wealth as 60 percent of the world’s population,11 and their interests were not well aligned with those of the rest of humanity. And when the pandemic struck, the world found out quickly that we were not “all in this together.”
During the pandemic, some billionaires and multimillionaires amassed exponentially greater fortunes while swathes of humanity lost lives and livelihoods and lacked access to lifesaving vaccines as well as food, adequate housing, and other social support. The pandemic reversed earlier gains in poverty reduction, pushing over a hundred million people into poverty—a historically unprecedented increase in global poverty that had cascading effects on food insecurity, school attendance, and health. Essential health services were widely disrupted by the pandemic, as was long-term care for chronic conditions, rehabilitation, and palliative end-of-life care, disproportionately affecting older people and people living with disabilities.
But the health effects of this evolution in national and global political economies were observable long before the pandemic. In different chapters, we will see mass sterilizations of indigenous women in Peru justified by a need for economic growth, barriers to HIV medications based on intellectual property regimes, chronic illness in coffee plantation workers caused by toxic food production, and widely disparate and gendered health outcomes due to increasing privatization of health systems across the world.
Moreover, trade liberalization, intellectual property rules, deregulation of private capital flows, and labor market “flexibilization” (a form of deregulation) came to be accepted by many governments as well as intellectual elites as the natural order of things. As public resources and capacities became ever-more constrained by structural adjustment and austerity, the path to “modernization” in health and beyond was increasingly paved with private sector solutions and philanthro-capitalist charity. Some autocratic regimes eagerly colluded with policies promoted by international financial institutions (IFIs) and powerful governments; others found themselves hamstrung by economic conditions previously negotiated or created. In addition to everything else, the “cruel pedagogy of the pandemic”12 exposed the mendacity of that neoliberal narrative, and that our exceptional dependence on market-based solutions is part of the problem, not the solution.
To be clear: there is zero nostalgia for some mythical romanticized past in this account. It is duality that I am interested in: while we were advancing health and other social rights, the dark side of the multilateral economic order was limiting the very space in which those rights could be realized. To use human rights to promote a robust agenda for health and social justice, we first need to understand “how things became what they are,” in Nietzsche’s expression. Then, based on a clear-eyed analysis of both the critical ground we have gained and why we have fallen short in other respects, we must reenergize the aspirations of a world where everyone enjoys health and other rights in practice. Working toward a social order that includes economic justice both within and across borders calls for critical praxis and experimentalism. Elaboration of positive norms within the bounds of international human rights law is an essential component, but alone cannot produce the transformations we seek. To tackle the structural inequalities in our institutional order, we in human rights need to work across other fields of law, as well as geographic and disciplinary borders. The task ahead requires experimenting with creative militancies, and unsettling orthodoxies not just in dominant macroeconomic and sociocultural constructs, but also in the constellation of overlapping fields related to health and human rights.
This account begins in the 1970s and traces developments over the decades since then. By placing this narrative in historical perspective, we can understand better the iterative nature of deploying rights for progressive change in health and beyond, as well as the contingency of normative developments. Given the multiple crises we face today iterative approaches may seem unappealing to many impatient readers. Although I share that fierce sense of urgency, history shows us that revolutions do not tend to yield the kinds of profound social and cultural transformations that both protect and advance the interests of diverse groups which are central to the world we want.
Chapter 1 situates the beginning of the account in Argentina during the civic-military dictatorship (1976–1983), and explores the factors that led human rights to become the dominant model for human emancipation; it describes the implications for health, and women’s health in particular, of how human rights issues were circumscribed in law and practice. In Chapter 2, we turn to the 1980s and examine how an embrace of neoliberal policies reconfigured the relationship between the state and markets, with ensuing effects on health and rights. Chapters 3 and 4 describe both the aspirational hopes for human rights in health and beyond that emerged with the thawing of the Cold War, and at the same time the tightening of neoliberal global governance during the decade of the 1990s. Situating the account in Mexico and Peru respectively, we see how subsistence farmers and indigenous communities were excluded from the vision of modernization that many states pursued. Yet these cases illustrate the power of human rights frameworks in enabling subaltern groups to articulate the causal drivers of their situations and to become agents of change.
Chapter 5 discusses how at the turn of the millennium, the HIV/AIDS pandemic underscored the global health security risks of infectious disease spread, while the catastrophic effects of economic volatility were evidenced in the rapid spread of the 2008 financial crisis around the world. Grounded in southern Africa, the chapter discusses both remarkable successes in establishing an enforceable right to health and implications of the marked proliferation of health-related human rights norms, institutions, and procedures during the 2000s.
Turning to Brazil and the landmark case of Alyne da Silva Pimentel, Chapter 6 analyzes the advances in elaboration of human rights–based approaches to health. By 2015, judicialization of health-related rights had also advanced at the national level, but with contested effects on equity in Latin America. The Brazilian context reveals how important enshrining health rights can be but also how democratic dysfunction and gaping inequalities constrain rights strategies from producing greater social transformations. Chapter 7 begins in 2016, with the adoption of the Sustainable Development Goals, and brings us through the pandemic years. The chapter focuses on what COVID-19 and government responses to it revealed about connections between health, health systems, and democracy, and concludes by exploring the demands of global health justice moving forward.
It would be impossible to set out a comprehensive account of the normative developments across regional and national contexts, let alone in international law. Moreover, scholars and practitioners who have actively carved out this terrain, including many of those with whom I have worked, have already told or would tell a very different story.
That is not my objective here. Trying to do justice to the complexity, this book explicitly weaves together multiple threads as different factors evolved. These factors range from epidemiological conditions and empirical knowledge to the advent of scientific and technological innovations, from social movements and alliances to legal mobilizations; from institutional leadership to funding for health systems and aid architectures; and from international law to development paradigms. It is the interactions among these factors that have shaped the path we in health and ESC rights have taken, the challenges we have encountered, and the future we face today.
It is not just that no single gaze can explain how we got to where we are. It is also that the silo-ing of disciplinary perspectives and systems for the production of knowledge in those disciplines, from law to economics to public health (and even sub-disciplines of human rights and global health law) stymies our collective capacity to see the ways that barriers to change in our institutional order relate to one another. My hope is that synthesizing ideas from multiple domains throughout the book will allow a wider group of readers to connect the dots as to how different events and developments are related.
The why question—why readers from diverse backgrounds should care about applying human rights in health—is best conveyed through what rights deprivations mean in real people’s lives. Here, as in other writing, I use stories to humanize the often dense and arid discussions of health systems, international law, and economic models. Using stories invariably involves the politics of power and representation, especially when the accounts relate to experiences of marginalized and vulnerable people. The stories from countries around the globe are explicitly recounted from my perspective, with awareness of my own positionality, and are based on contemporaneous journals and field records, together with additional research.13
In our personal lives, we tend to see the cascading effects of life-changing moments in hindsight. But it is imperative that we collectively reflect on the world-altering COVID-19 pandemic. The stories we tell about the sprawling pain diverse people experienced and continue to experience—and why—will define the future we create. These stories are not captured in statistics of disease and death, legal analyses, or policy reports alone. Many are “ordinary” tragedies and traumas that go uncounted: the tears of loved ones we could not wipe away and the hugs we longed to give; the grief over a partner forced to die alone; the despondency of a teenager who started to cut himself; the unrelenting loneliness of an elderly woman; the sense of abandonment of an intellectually disabled man whose family could not visit him in his institution; the hopelessness of a single mother who lost the housecleaning job she used to support herself and her children; the desperation of families who could no longer pay their rent; the despair of those consigned to suffer with long COVID-19 in the shadow of massive government indifference; and on and on. These are stories about important parts of our lives that were robbed during the pandemic, which in turn speak to what we value and who we are as human beings in ordinary times.
Of course, not all of what happened to individuals, communities, and countries as a novel coronavirus swept across the planet amounts to injustice; discerning when misfortune becomes injustice is the point.
1. Quoted in Tracy Kidder, Mountains beyond Mountains (Random House, 2004), 294.
2. Amartya Sen, Development as Freedom (Oxford, UK: Oxford University Press, 1999), 282.
3. Manny Fernandez, Richard Pérez-Peña, and Jonah Engel Bromwich, “Five Dallas Officers Were Killed as Payback, Police Chief Says,” nytimes.com, July 8, 2016, https://www.nytimes.com /2016/07/09/us/dallas-police-shooting.html.
4. Katie Reilly, “Read President Obama’s Speech from the Dallas Memorial Service,” time.com, July 12, 2016, http://time.com/4403543/ president-obama-dallas-shooting-memorial-service-speech-transcript/.
5. International Study Team on the Gulf Crisis, Health and Welfare in Iraq after the Gulf Crisis: An In-Depth Assessment, archive.cesr.org, 2019, http://archive.cesr.org /downloads/Health%20and%20Welfare%20in%20 Iraq%20after%20the%20Gulf%20Crisis%201991.pdf.
6. Philip Alston, UN special rapporteur on extreme poverty and human rights (2014−2020), sets out a similar framework in UN Human Rights Council, Report of the Special Rapporteur on Extreme Poverty and Human Rights, UN Doc. A/HRC/32/31, ¶12 (April 28, 2016).
7. S. v. Baloyi and Others 1999 (1) BCLR 86 (CC) 29/99 ¶12 (Sachs, J.) (S. Afr.).
8. Kathryn Sikkink, Evidence for Hope: Making Human Rights Work in the 21st Century (Princeton, NJ: Princeton University Press, 2017); Samuel Moyn, Not Enough: Human Rights in an Unequal World (Cambridge, MA: Harvard University Press, 2018).
9. Alicia Ely Yamin, Power, Suffering, and the Struggle for Dignity: Human Rights Frameworks for Health and Why They Matter (Philadelphia: University of Pennsylvania Press, 2016).
10. Nancy Fraser, The Old Is Dying and the New Cannot Be Born: From Progressive Neoliberalism to Trump and Beyond (Brooklyn, NY: Verso Books, 2019), 37–38.
11. Claire Coffey et al., “Time to Care: Unpaid and Underpaid Care Work and the Global Inequity Crisis,” briefing paper (Oxford, UK: Oxfam International, 2020).
12. Boaventura de Sousa Santos, “La cruel pedagogía del virus” (Buenos Aires: CLACSO, 2020).
13. Informed consent for all field research was obtained pursuant to ethical review board procedures both at US institutions and in countries, and names of people not already in public legal or other records have been changed to protect identities.
PRESS