I argue throughout this book that the core of applying a human rights framework to health involves understanding that patterns of health and suffering reflect power relations as much as they do biological or behavioral factors. If HRBAs, or human rights frameworks generally, are to be meaningful to the people on whose behalf we purport to work, they must strive not just to analyze but to remedy what Paul Farmer calls the “pathologies of power” that produce gross inequities within and between our societies.12 When we begin to rethink power relations and to question the root causes for our own and others’ suffering, it “de-naturalizes” both the biological individualism of the medical and health fields and many of the societal arrangements that perpetuate poverty, inequality, and violations of human rights; we see that these forces do not “just happen”; that they are neither “natural” nor inevitable acts of God. Thus we can begin to reexamine what it means to say that something causes someone’s illness or condition, and also look at what produces certain distributions of power and privilege in society. We can begin to question prevalent narratives for thinking about poverty, inequality, human rights, and health that we often take for granted.
Many of these questions have no easy answers. No area of human rights more acutely poses queries about what is required of society for individuals to live lives of dignity than health. Think, for example, of the baby born very prematurely, who is kept “alive”—in some very limited meaning of that word—in a hospital in the economic North at inordinate expense to the public’s coffers, or of the person with terminal cancer in a middle-income country whose “few more months” may cost more than what it would to immunize the majority of children in a rural community. Where do the boundaries of social and state responsibility lie? These are some of the questions of life and death with which we need to wrestle honestly and sincerely, and without empty sloganeering, if we care about applying human rights frameworks to health.
Further, we need 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
