Power, Suffering, and the Struggle for Dignity. Alicia Ely Yamin

Chapter 2 begins with another example from my early days of human rights advocacy work in Mexico. During the course of investigating an atrocity by the Mexican military in a remote region of Chihuahua state, I found myself watching an infant die. Stunned by the mother’s lack of indignation over her child’s death, I argue that extreme poverty cannot be seen as a “background condition” but should be understood as just as much a violation of human rights as acts directly committed by state agents. The powerlessness wrought by extreme poverty is as devastating as that inflicted through torture, and the effects are the foreseeable result of human decisions about policies and programs at multiple levels. Yet even when there are obvious health consequences, we still too often fail to appreciate the human causality and state responsibility that lie behind these deprivations of dignity.

      International law has advanced significantly in terms of eroding unhelpful distinctions between civil and political (CP) rights and economic, social, and cultural (ESC) rights, as has the jurisprudence of various national courts. Indeed, in both international and some national law there is now a concept of minimum essential levels of ESC rights necessary to life with dignity, as well as implications for leveling the playing field. However, just as with reframing state obligations regarding the private sphere, there is still a long way to go to change public understanding of ESC rights so that they are seen as real rights. I argue that to do so requires examining our assumptions about prevailing neoliberal economic paradigms and state responsibilities, as well as about the ways in which power prevents people from exercising freedom in practice and the consequent implications for how we think about justice.

      In Chapter 3, I argue that conventional approaches to medicine and public health also require rethinking. Describing an incident that occurred early in my public health career in Haryana, India, I illustrate the limitations to empowering people through conventional public health approaches that treat social determinants—such as caste, gender, and racial hierarchies—as “distal,” or background, factors, as opposed to the proximate behavioral causes on which most interventions as well as research focus.

      Applying a human rights framework does not and cannot mean ignoring the need for access to biomedical advances. As Paul Farmer argues, the right to health must include the “right to sutures”—and blood, essential medications, and other supplies.²³ At the same time, a meaningful HRBA also calls for contextually grounded strategies to chip away at the power structures that perpetuate patterns of illness and suffering. These are all too often relegated to background conditions that cannot be touched in the short term in public health planning and policies; as a result, they never get addressed. After distinguishing between a right to health and the application of an HRBA or a human rights framework to health, which includes these social determinants that relate to other rights, I explore how such an approach, which builds on work in social medicine and social epidemiology, demands a fundamental shift in the way that health is generally understood in mainstream medical and public health practice.

      In Chapter 4, starting with a story from the remote jungle “department” (state) of El Chocó in Colombia, I emphasize the significance of health systems within an HRBA to health. Health is largely a result of social determinants that go beyond the health sector. However, health systems reflect the patterns of discrimination and inequalities found in the overall society; alternatively, they can also help to facilitate greater substantive democracy. Health systems lie at the core of the realization of the right to health, as well as of HRBAs to health. In a rights framework, a health system is understood as a core social institution—“akin to the justice system or a fair political system”—rather than a delivery apparatus for goods and services.²⁴ So, for example, a society in which rich and poor alike feel that the health system is fairly prioritizing their needs is a more just society than one in which rich and poor are treated in different institutions with different standards of care—simply because of access to money.

      A fundamental distinction of an HRBA to health systems is a focus on accountability. Arguing that an HRBA requires a “circle of accountability,” Chapter 4 describes how such an approach would differentiate it from a conventional approach at each stage of the policy cycle, from the initial situational analysis through planning and budgeting processes to program implementation and monitoring and review mechanisms to remedies.²⁵ Returning throughout the chapter to the context of Colombia, I outline a systemic judgment by the Colombian Constitutional Court in 2008, which called for restructuring the health system along rights principles. I highlight the importance of that historic judgment, especially to the extent that it arguably destabilized entrenched assumptions and interests in the Colombian health sector and triggered a chain of varied effects. Throughout the book, I emphasize that applying a human rights framework in a transformative way aims to change dynamics of relationships between the public and the state to a relationship of entitlement and obligation and to dis-entrench patterns of power and privilege, which systematically deprive some people of their health and other rights. At the same time, I note challenges for meaningful change that continue to exist in the Colombian context.

      In Part II, “Applying Human Rights Frameworks to Health,” I examine specific aspects of HRBAs to health, and human rights frameworks more broadly, and I make more explicit how human rights frameworks can be applied by different actors to produce social transformation, providing examples throughout. As Part II develops human rights concepts introduced in Part I, readers may find these chapters somewhat more academic than those in Part I. However, it is precisely my intent that the explanation and application to the stories I introduce will make these legal concepts more accessible to nonlawyers. Human rights–based approaches require a broad, multidisciplinary response that depends on all of us, whether we are legal, development, or public health practitioners; professionals as well as ordinary citizens.

      A fundamental part of the argument I make in these pages is that the divide between theory and practice is deeply fallacious; how we think about global health problems shapes what we do about them. It is useful to analyze specific conceptual elements of HRBAs to unpack what they imply in practice and to determine where both the theoretical and practical dilemmas lie. In showing how human rights tools and strategies to health have been deployed in concrete contexts by different actors, I note that many examples are partial, effecting only incremental changes. Yet that need not be discouraging, as changes in certain choice situations and relationships of power can trigger a cascade of changes, which in turn create meaningful improvements in the enjoyment of health and other rights by many other people.

      Chapter 5 begins with a story of a maternal death in Sierra Leone, one of the poorest countries on earth and which was ravaged by a brutal civil war for many years and most recently has been decimated by Ebola. In what may seem a somewhat unlikely context, I return to the importance and meaning of accountability within a human rights framework. Perhaps what a human rights framework uniquely adds to other work in public health that is focused on social determinants lies precisely in the definition of relationships between rights-holders and duty-bearers. This identification of duty-bearers, in turn, permits the creation of a framework for accountability, including judicial recourse.

      I stress, however, that accountability cannot mean adding remedies to broken systems. Real accountability calls for changes not only at multiple levels of decision making regarding health or, as described earlier, the establishment of a circle of accountability across the policy cycle but also across different relationships of entitlement and obligation: providers and patients; programmers and policy makers; policy makers and parliamentarians; elected governments and citizens. Further, in this chapter I explore not just different mechanisms but also different aspects of state obligations for taking positive measures in human rights; that is, for what is the state accountable? How