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

Pilar felt—and her actual powerlessness—was just as profound as that which Rosa experienced as she watched her brother being tortured. Indeed, when the World Bank published the groundbreaking Voices of the Poor study in 2000, which attempts to understand people’s experiences of poverty through discussions with tens of thousands of poor people around the globe, what came across was that “again and again, powerlessness seems to be at the core of the bad life.”⁷ The very poor are at the mercy of fate, as well as the capricious whims of those in power; when poverty is combined with other axes of identity, such as ethnicity in this case, or gender, race, or caste, the disempowering effects can increase exponentially. Moreover, as the World Bank study showed, being extremely poor not only means going without food or shelter or education, it also often means being treated badly by institutions, such as the health and justice systems, and excluded from voice in those institutions as well as in the larger society.

      Yet the human decisions and human actions that lay behind the death of Pilar’s son seem more obscure, more invisible, than what happened to Héctor Quijano. Once again, how we understand causation and the boundaries of human responsibility lie at the heart of how we respond to different forms of suffering. That is, if we understand Pilar’s son’s death as misfortune or personal tragedy, it elicits a very different response than if we understand it as injustice, for which the ground was laid by human decisions and actions, not by divine will. Although the first perhaps creates sympathy, the second calls on us to translate compassion into political, social, and legal action.

      Philosopher Thomas Pogge writes that extreme poverty—and the suffering and human rights violations that it creates—are intimately connected to our social arrangements at national and global levels: “Severe poverty today, while no less horrific than that experienced by the early American settlers, is fundamentally different in context and causation. Its persistence is not forced on us by natural contingencies of soil, seeds, or climate. Rather, its persistence is driven by the ways that economic interactions are structured: by interlocking national and international institutional arrangements…. We can avoid it … by restructuring national and global legal systems so that everyone has real opportunities to escape and avoid severe poverty.”⁸ It was through experiences such as the one in Baborigame, that I came to feel at a visceral level that for human rights frameworks to be relevant to the struggles for dignity of the great majority of the world, these frameworks needed to provide useful approaches to restructuring those national and global systems.

      In this chapter, I first set out the interconnectedness of all human rights—economic, social, cultural, civil, and political. I go on to explore what it would mean to conceive of issues relating to social and economic conditions—and to health, in particular—as rights, and how doing so is directly related to our understanding of the importance of dignity and has consequences for how we address lack of access to the most basic conditions of public health and health care. I then describe how modern human rights law has evolved, including eroding the differential treatment of categories of rights. But I also note challenges presented by prevailing neoliberal economic paradigms and their relationship to narrow conceptions of rights. I argue that traditional arguments against health and other ESC rights are misplaced, and reveal certain limited assumptions about society, the obligations of the state, and the demands of justice. It is only when we question those narratives that we can develop empowering approaches to human rights—and development—which can better address the root causes of poverty and advance the health and dignity of the most disadvantaged among us.

       Interdependence and Indivisibility of Human Rights: The Right to Health as Set Out Under International Law

      As discussed in Chapter 1, the deprivation of civil rights—through torture or the arbitrary detentions by the military in Baborigame, for example—have severe health consequences. Indeed, health is both the result of the enjoyment of a wide array of different human rights, as well as a precondition to be able to participate fully as an equal citizen in society and to live a life of dignity. It illustrates vividly the importance of thinking about the realization, as well as the violation, of human rights in terms of their interdependence and indivisibility.

      The Universal Declaration of Human Rights, which was promulgated by the United Nations General Assembly in 1948, reaffirmed member states’ “faith in fundamental human rights, in the dignity and worth of the human person and in the equal rights of men and women and [their determination] to promote social progress and better standards of life in larger freedom.” The Declaration includes both CP rights and ESC rights, including the right to a decent standard of living.⁹

      The recognition of all human rights as being inextricably intertwined makes intuitive sense. We cannot think about an active citizenry participating in public affairs if those citizens are uneducated. Conversely, we cannot imagine a meaningful right to work without freedoms of association and information for workers. Further, as in Baborigame, much of poverty is inextricably linked with discrimination along gender, religious, racial, ethnic, or other lines. And it is often a noxious combination of intersecting discriminations, as well as stigma, that entrenches people in poverty and limits their ability to exercise agency.

      In 2014, a long way from Baborigame, I met Paula, whose life story illustrated exactly how these different kinds of rights deprivations combine to limit life choices. Paula was one of the plaintiffs in a court case being brought on behalf of a group of Kenyan women who had been involuntarily sterilized because of their HIV status. She was in her 40s when I met her, with a tenacity that must have helped her through the many hardships and the constant discomfort she suffered as a result of a poorly performed bilateral tubal ligation (BTL). Paula had been born into abject poverty in a village in western Kenya, had been forced to drop out of school after completing primary school, had gotten pregnant multiple times against her will because the successive men in her life had not allowed her to use contraception, and had been infected with both syphilis and HIV. None of Paula’s partners had provided for her after her children were born and she often had to support not only herself and her children but also these men, as well as her grown brothers. She had been subjected to emotional and physical abuse by nearly all the men in her life and, finally, by the health system, which coerced her into having a BTL by threatening to withhold the infant formula and antiretroviral (ARV) medications vital to both her and her child’s survival. Paula’s experience of the funnel of narrowing choices over her life was inextricably shaped by the interactions between her economic exclusion and the brutal gender discrimination she faced which led to lack of education and abuse, as well as the stigma and ignorance surrounding HIV. In real people’s lives, autonomy and entitlements, and different kinds of rights that enable living with human dignity, are inseparable.

      Nevertheless, during the Cold War, CP rights (such as rights to bodily integrity and freedom from torture) and ESC rights (such as rights to work, education, and health) were divided into twin covenants, in which the obligations had very different status under the law. The right to health was treated as an ESC right under international law and was included in the International Covenant on Economic, Social and Cultural Rights (ICESCR), which was promulgated in 1966. Because of the manner in which obligations are worded in the ICESCR, much of the right to health was not immediately enforceable, in contrast, for example, to civil rights, such as the right to be free from torture or cruel, inhuman, and degrading treatment. Rather, it was subject to “progressive realization” in accordance with a state’s “maximum available resources.”¹⁰

      Article 12(1) of the ICESCR, which is the core formulation of the right to health under international law, sets out the right of everyone to the “highest attainable standard of physical and mental health.” Article 12(2) announces steps states should take toward its progressive realization: “reduction of the stillbirth-rate and of infant mortality and [provision] for the healthy development of the child; improvement of environmental and industrial hygiene; prevention, treatment and control of epidemic, endemic, occupational and other diseases; and the creation of conditions which would assure to all medical service and medical attention in the event of sickness.”¹¹

      The distinction between the way CP and ESC rights were treated in the twin covenants reflected and affected interpretation, discourse, and practice under