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

to be willing to follow the implications of the conclusions about what justice in health would require, which I argue often demands that we rethink our approaches to both global health and human rights. For example, I believe we should all feel outrage at how arbitrary it is that the woman in Chiapas could have easily died (and all too many women do) while my own miscarriage meant simply a minor medical procedure. If we share that visceral indignation, even when the suffering is across borders— “out there”—we first need to understand what factors underlie that arbitrary difference in life chances; what makes it injustice rather than tragedy; and what opportunity structures exist, for different actors, to change those circumstances. And then, we need to act. This book is a call to begin to remake our institutions, and social and legal arrangements, at national and global levels, as a matter of what we owe to one another as full human beings with equal dignity.

      Much of this book discusses women’s and children’s health, both because they have been the focus of my own work and because they are particularly sensitive reflections of patterns of justice and injustice. Poverty and inequality are inscribed in the malnourished, and too often stunted, bodies of children. Show me a profoundly malnourished child and I will show you factors of social and gender injustice within the family; in the community; in access to information, health care, and education; and in the food-security policies, budgeting priorities, and legal and policy frameworks of the country.

      Or take maternal mortality. As I have often emphasized, maternal mortality is not principally a medical problem; it is primarily a social problem and a problem of political will at both the national and international levels. Hundreds of thousands of women and girls are still dying every year in the global South not because we do not know how to save them—we do, and we have for well over half a century—but because their lives are not valued, because their voices are not listened to, and because they are discriminated against and excluded in their homes and communities and by health-care systems that do not prioritize their needs.¹³ Those are issues of fundamental human rights and social justice, and rights therefore need to be at the center of responses.

      Amazing advances have been made not only in the conceptual clarification of HRBAs to health and development in recent years but also in the evolution of the right to health itself. A flurry of recent books on the right to health in international law and in regional perspective attests to the intensity of activity, as well as to scholarly attention.¹⁴ Yet an enormous gap exists between theoretical discourses and practice. Human rights frameworks and HRBAs remain marginal in mainstream development as well as in health policy and programming across much of the world. Not only is the enjoyment of the right to health a very distant dream for most of the world’s inhabitants, but even the idea of an enforceable entitlement relating to health care and public health protections seems disturbingly irrelevant to most discussions about health and development that take place at national and global levels.

      Now that we have a clearer idea of the concepts and principles that characterize an HRBA to health, I believe that we need to translate that knowledge for development economists and governmental policy makers, for health practitioners, and most of all for the people whose lives and well-being are affected. We need to make human rights frameworks relevant for them by making explicit assumptions regarding how social change happens and how applying a human rights framework to health would make a difference in practice.

      Human rights are all too often thought about by health professionals and the public as abstract principles or as relating only to laws and policies. On the contrary, as I make explicit throughout this book, applying HRBAs should change decision making, and in turn opportunity structures, in specific ways at multiple levels of government and throughout the stages of the policy cycle. One aim of this book is to illustrate how human rights frameworks are relevant to the decisions that policy makers, providers, programmers, activists, and judges face in their daily work and in turn how human rights strategies can be deployed to produce changes in normative recognition, policy processes, and social mobilization, which ultimately have the potential to create social transformation.

       Addressing the “So What” Questions

      In addition to showing how human rights frameworks can be operationalized in practice, we also need to address the “so what” questions in a broader sense—Why should people care about applying human rights to health? Why do these frameworks matter? I believe that to answer these questions adequately requires the development of an empirical evidence base with respect to their impacts. Human rights frameworks and HRBAs are still reasonably new, but now that we have a better sense of common elements of what they include, we need to move beyond hortatory invocations of their importance to establishing what difference they can make in diverse people’s lives. I argue throughout this book that establishing and measuring impact must go far beyond merely pasting some indicators that might be easy to grasp—such as “respectful care”—onto traditional public health programs. Developing such an evidence base also requires new methodologies to capture the full impacts and, more broadly, lessons of applying human rights frameworks, which go beyond standard public health outcome and process measures.¹⁵

      Trying to point to value added of human rights in conventional health programs is enticing, as we want national governments to adopt HRBAs; yet I fear it will ultimately be self-defeating because applying human rights principles will not necessarily accelerate progress in conventional measures. In addition, doing so reduces human rights to a purely instrumental value. Throughout these pages, I argue that a meaningful HRBA cannot merely repackage a conventional public health program. On the contrary, applying an empowering human rights framework to health transforms the evaluative space—the outcomes of interest as well as the process. For example, as discussed in later chapters, if we take seriously that human rights require shifting power dynamics, as I suggest, then we need metrics to assess political and institutional changes, shifts in public perceptions, and changes in outcomes.

      What we measure reflects what we care about. Therefore, answering the “so what” question also necessarily calls for engaging in a dialogue with people outside the human rights field about normative questions—about how things should be, about what we should care about. The “so what” question inevitably leads to discussions about the purpose of health policies and programming in particular and of social and economic development more generally—and even about the nature of power and justice. In applying a human rights framework to health, in the context of maternal health, for example, we do not care simply about averting deaths. Rather, from a human rights perspective, women and girls have the right to live lives of dignity, which includes enjoyment of their sexual and reproductive health and rights (SRHR) as well as other human rights. As part of enabling them to do so, we should ensure that they have the conditions to go through pregnancy and childbirth safely. But applying a human rights framework also requires giving them meaningful choices throughout their lives, which go far beyond the health sector.

      The great majority of women who die from pregnancy-related complications have lived lives marked by poverty, deprivation, and discrimination. From the moment of their births, these girls and women often face a funnel of narrowing choices whereby they are unable to exercise meaningful agency with respect to what they will do with their lives, how they will express their sexuality, how much they will be educated, with whom they will partner, when they will have sex, whether they will use contraception, and finally—as in the case of the woman in Chiapas who was suffering a miscarriage—what care they will get when they are pregnant or delivering, even when their lives hang in the balance. Applying a human rights framework to health in the context of maternal health, demands opening spaces, by shifting the opportunity structures—the resources and barriers—different actors face—to enable these women to live with dignity.¹⁶ Answering the “so what” question requires fundamentally rethinking the nature of the problem, as well as the solution.

      I also argue throughout this book that to effect transformative social change we need to shift thinking not merely in relation to health, as large a challenge as that is, but in relation to the demands of human rights. Part of the distressing disconnect between the normative development of human rights law relating to health and what public opinion and public policy in many countries reflect, relates to narrow conceptions of human rights—as civil and political rights only—and