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

it is going about the process?

      In Chapter 6, I return to Latin America. Through a story of rural health promoters from Puno, Peru, I explore the complex and challenging subject of participation in health. A fundamental aspect of a human rights framework is that people are not treated as passive recipients of goods and services but as participants in decisions that affect their well-being. I argue in this chapter that to understand meaningful participation in a human rights framework requires understanding where power resides and how power operates to keep people from challenging inequity, even when their health and well-being are at stake.

      Active participation depends on the conditions for pluralistic democracy in a liberal state, including transparency and access to information. It is important to remember that participation also includes the voice of health professionals who are themselves often silenced within hierarchical and punitive health systems. However, I argue that effective participation that leads to mobilization for transformational change also requires going beyond liberal understandings of power to challenge how discourses and agendas, as well as boundaries for participation, are defined. Indeed, human agency and dignity are constrained in many ways that are invisible, and setting health and other priorities based on people’s subjective assessments of their own suffering, as is done in conventional public health, may in fact entrench unfair background conditions that reduce people’s own expectations for their lives. Ultimately, enabling people to participate in ways that challenge their own internalized subordination calls for the development of critical consciousness.

      In Chapter 7, based on a discussion of a young, disabled woman who died of pregnancy-related complications in KwaZulu-Natal, South Africa, I examine the implications of a rights framework’s demands that equality and nondiscrimination be placed at the center of a public health and development agenda. The South African context illustrates sharply how intersecting forms of discrimination, based on race, disability, gender, and other axes of identity, conspire against diverse people living in poverty to deprive them of life choices.

      A focus on equality has dramatic implications for public health and mainstream development. Conventional public health all too often remains in the thrall of health maximization, which measures “success” using averages and aggregate statistics, often based on achieving the “biggest bang for the buck.” From a human rights perspective, national averages are not sufficient in measuring impact; disparities among populations can be more revealing of the obstacles underlying the achievement of well-being for certain historically disadvantaged groups in society.

      This chapter further explains that the principle of “equality” in human rights has different faces. Formal equality requires equal treatment for similarly situated people and is closely related to demands for universalization of services. However, substantive equality acknowledges that in fact all people do not have equal starting points, and therefore different measures are required to achieve equal enjoyment of health and other rights. Conventionally, the human rights community has been overly reticent about taking stands regarding social inequality, which is a profound social determinant of population health. Not only is there increasing empirical evidence that social inequality is bad for our health, but I argue that the equal concern and respect for people, which meaningful substantive equality requires, demands as a normative matter certain degrees of economic equality and the macroeconomic policies that achieving such conditions would entail.

      Yet fairness in health is not simply a matter of addressing income inequality or social exclusion, as it might be in relation to other rights; it also depends on considering other factors, such as the severity of a person’s illness. After all, we have some notion that very sick people should be given priority in terms of resources over people who are suffering from relatively trivial conditions. Similarly, we consider comparative effectiveness of different interventions because to ignore efficiency considerations entirely has not just economic consequences but also equity consequences in terms of how many people end up suffering. Because even reasonable people will disagree on the relative weight of these different factors, addressing inequality in health requires a process that enables meaningful deliberation among those affected.

      Chapter 8 examines human rights obligations beyond borders and begins with the story of a woman’s death in a district hospital in Tanzania, a highly aid-dependent country. So many of the causes of people’s poverty and ill-health in the global South are a result of global institutional arrangements and decisions taken beyond their national borders—in Washington, D.C.; New York; London; and even Seattle, Washington. Human rights law generally considers the relationship between people and national governments, which by itself can obscure the important actors and forces that have influence that cuts across national borders and boundaries. But this has begun to change.

      This chapter explores differing concepts of global accountability and health governance, as well as a variety of emerging efforts to hold donor states responsible for extraterritorial obligations, in order to make advances with regard to the health of the poor in the global South. I discuss not only traditional forms of international aid cooperation but also the role that unjust institutional arrangements play in systematically putting some countries at a disadvantage in relation to others. I close the chapter by returning to a fundamental theme of the book: What is at stake in competing narratives of “sustainable development,” which will be the future development agenda?

      Finally, in the Conclusion, I reflect on what it can mean to apply a human rights framework to health—as opposed to other frameworks for social change—and why people who are concerned with social justice should care. Through the story of a boy I met in a psychiatric hospital in Argentina, I come back to the main message of this book: With the concerted efforts of people around the globe, another world is possible.

      There is no recipe or magic bullet for the realization of human rights to health for all people. Throughout this book, I emphasize that progress can be and has been made. But meaningful human rights frameworks and HRBAs are about social transformation, which demands struggles for power and not “pleas to have human rights conferred” by the state.²⁶ Those struggles are inherently political, messy, and complex. Transformative change does not follow a linear path. Indeed, the ever-increasing array of toolkits to “show people how to apply HRBAs” will end up being counterproductive if they imply that to do so is akin to following a generic, technocratic formula. As I suggest in the later chapters, versions of human rights already coexist far too comfortably with neoliberal economic paradigms and are easily palatable to those who benefit from the status quo. If HRBAs to health, and human rights frameworks more generally, are to fulfill their promise in changing the systems that perpetuate inequality and injustice, they must subvert entrenched and insulated institutions and what have become virtually hegemonic views of the world. If rights are to be useful, they should play a role in destabilizing both norms and practices that deny certain people equal respect and concern. This book is not a manual on HRBAs to health; it is, on the contrary, a call to hold onto the radical possibilities of applying human rights frameworks to health.

      When I began my work on health and human rights, an eminent international expert dismissively informed me that to spend my time promoting a legally claimable right to health—and maternal health in particular—was as useful as dedicating my life to knitting coats out of butterfly wings. As we see in these pages, a lot has changed in the twenty years since that moment. But there is still an enormous amount of work to do. If we collectively hold onto the emancipatory potential of using a human rights paradigm to promote social justice, I am convinced that we can transform, albeit incrementally and with inevitable setbacks, the landscape of global health and rights.

       Concluding Reflections

      My mother never failed to say “there but for the grace of God go I” whenever we passed a homeless person on the street in New York City. I only came to realize much later that, in her case, it was not a way of eliding the social and economic policies that distinguished her—our—fortune from theirs. Rather, it was a practice of mindfulness, an acknowledgment of the human being in front of her, and a reminder to be compassionate on a daily basis.