When Misfortune Becomes Injustice
Evolving Human Rights Struggles for Health and Social Equality
Alicia Ely Yamin

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Contents and Abstracts
Introduction: Allegorizing the World
chapter abstract

Over the years, advocates for advancing economic, social, and cultural (ESC) rights, including health rights, have faced three challenges: (1) the need to subvert entrenched ideas that ESC rights were not real rights, but mere programmatic aspirations; (2) the need to articulate a vision for taking ESC rights seriously in laws, policies, and practices; and (3) the need to demonstrate that doing so could achieve meaningful progress toward social justice. The author argues that while much has been achieved in terms of the first two challenges, this is less true of the third. Drawing on almost three decades of advocacy for the right to health and health-related rights, the author uses sociolegal, deliberative, and critical feminist perspectives as theoretical frames to analyze health as a reflection of power relations and structures and human development as removing "unfreedoms," to use Amartya Sen's term.

1 Indignation and Injustice
chapter abstract

In the wake of reluctant decolonization, disenchantment with radical politics, and evidence of military and authoritarian brutality, human rights became a leading model of empowerment in the 1970's. Yet human rights was confined to a legal approach to change (as opposed to a broader ideological strategy) and focused largely on civil and political rights violations in the so-called public sphere. It did not address many issues so crucial to women's health. This struggle would require shifting understandings of who was entitled to be full subjects of rights and what that required from the state to ensure rights across spheres. The 1970's also saw the advent of widespread access to oral contraception, which led to legal mobilization around contraception and abortion. Further, feminist debates around the world began to contest women's confinement to the "private" sphere and mobilized around rights freedom from discrimination and gender inequality.

2 The Significances of Suffering
chapter abstract

In line with the reigning political discourse of the 1980's of poverty as personal failure, the idea of health and health systems as marketplaces spread in the US, but in global health, empirical data were producing contrary movements linked to primary care and new ideas of children's rights enshrined in the Convention on the Rights of the Child. This new data highlighted the need for interventions to prevent maternal deaths and promote women's health as distinct from children's health. Finally, the 1980's saw the emergence of the HIV/AIDS pandemic, which was treated as a modern "plague" and stigmatized gay men, IV drug users, sex workers, and other marginalized groups in law and practice. This chapter argues that these discourses of health and suffering are inextricably connected to possibilities for constructing health rights. In many ways, this struggle has sought to change the political economy of avoidable suffering.

3 Diverging Parables of Progress
chapter abstract

Following the collapse of the Berlin Wall in the early 1990's, social and transformative constitutionalism encoded new ideas of social contracts. Models of "human development" began to be adopted as alternatives to "development as economic growth." In the wake of the groundbreaking 1993 Vienna World Conference on Human Rights, civil and political rights were reaffirmed as interdependent and indivisible with economic, social, and cultural rights. The 1994 International Conference on Population and Development saw a tectonic shift away from demographic imperatives to a focus on women's reproductive rights as subjects of their own bodies and lives. One year later, the Beijing Conference on Women extended ideas of women's health to include political shifts for equality. These ideas, coupled with the HIV/AIDS pandemic, facilitated a nascent health and human rights movement, while the simultaneous intensifying economic integration, deregulation, and commercialization of debt worked against these same goals.

4 Dystopian Modernization
chapter abstract

Using Fujimori's autocratic Peru and a case on involuntary sterilization to ground the chapter, this chapter describes the dystopian realities that activists faced after the changes made at global levels. Peru's situation serves as a metaphor for the larger global dynamics—both in terms of the zeal with which Fujimori pursued neoliberal "modernization" and its perverse effects on reproductive rights, and in its aftermath. However, violence against women became much more widely understood as an injustice by those actually affected. This chapter evaluates the impacts —direct/indirect, material/symbolic—of deploying human rights in health. A complicated picture emerges from an evaluation of Peru, due to the difficulty in measuring the quality of appropriating agency and rights.

5 Globalizing Crises, Pandemics, and Norms
chapter abstract

Against the backdrop of financial hyperglobalization and economic restructuring leading up to the 2008 crash, national constitutions enshrining health rights were used to advance access to HIV medication and other health-related rights. Looking at South Africa, this chapter analyzes how social and legal human rights activism produced a global movement for enforcing the right to health through judiciaries. This advocacy also led to the restructuring of global health governance during the Millennium Development Goals (MDGs) and reactions to the technocratic MDGs in relation to the conceptualization of health systems as core social institutions. There was also a proliferation of international human rights norms, institutions, and procedures related to health and an increasing tendency toward positivist norms and institutional bureaucracies that led to fragmentation. International forums were also used to set sexual and reproductive health and rights standards, even as they were challenged by a conservative backlash.

6 Inequality, Democracy, and Health Rights
chapter abstract

Referring to the CEDAW Committee's Alyne da Silva Pimentel v. Brazil case, which recognized access to maternal health care as a right, this chapter examines the progress made in normative elucidation of health rights and the meaning of a human rights<->based approach (HRBA) to health. The author describes the application of an HRBA in Brazil to follow-up the Alyne decision but also points to the danger of using HRBAs to paper over power differences. Judicialization of health had expanded beyond a specific disease, and the question had become how judicial enforcement might enhance equity, rather than undermine it. National courts had developed innovative "dialogical" remedies to attempt to bring about collective and structural changes, which required revising traditional institutional roles of courts versus political organs. When combined with social and other forms of mobilization, these opinions have proven significant in advancing health rights in direct and indirect impacts.

7 Power, Politics, and Knowledge
chapter abstract

This chapter opens by setting out the chaos in the current context, with challenges from displacement, continuing inequality, climate crises, and conflict, to argue that these conditions, which swept a wave of populists into power, reflected a crisis in the legitimacy of democratic institutions. The author argues that the Sustainable Development Goals' prioritization of universal health coverage opens possibilities for convergences with organizing health systems around the right to health, if taken seriously, in terms of fair financing, which includes noncitizens; democratically legitimate priority-setting; and effective regulation and oversight. However, the mechanisms of implementation that relied heavily on the private sector for financing and implementation were a continuation of the neoliberal framing of the world. The author concludes by highlighting the importance of states' extraterritorial obligations through multilateral institutions, and over the transnational corporations over which they exercise effective control

Conclusions: Turning Toward the World We Want
chapter abstract

This chapter begins with a vignette from a case at the Inter-American Court of Human Rights, which is now poised to enforce health rights independent of a nexus with CP rights. It concludes that health and other ESC rights can be legally enforceable (as the Inter-American Court case, and many others discussed, suggest). The question is now how best to enforce them and ensure implementation. Second, in health in particular, there is now developed guidance regarding law reform, participatory and multisectoral planning, budgeting, institutional reform and programming, and evaluation, as well as the need to address social determinants. There are also tools to measure the progressive realization of human health and ESC rights. On the other hand, health rights advocates have not yet delivered on robustly egalitarian laws and policies.