When Misfortune Becomes Injustice
Evolving Human Rights Struggles for Health and Social Equality, Second Edition
Alicia Ely Yamin, Foreword by Sakiko Fukuda-Parr


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. While much has been achieved in terms of the first two challenges, a shrinking political space under which ESC rights can be realized has limited progress on the third. Drawing on decades of advocacy for health-related rights, as well as revelations from the COVID-19 pandemic, the author uses analizes global health issues as a reflection of power relations within and between societies.

Chapter 1: Indignation and Injustice
chapter abstract

Human rights became a leading model of empowerment in the 1970's. Yet human rights was approached from a legal standpoint (not a broader ideological strategy) and focused largely on civil and political rights violations in the public sphere, within nation-states. It did not address women's health nor economic struggles more broadly. The 1970's also saw the advent of widespread access to oral contraception, which led to legal mobilization around contraception and abortion. Feminist debates began to contest women's confinement to the "private" sphere and mobilized around rights, freedom from discrimination, and gender equality. The chapter describes reproductive justice advocacy in Argentina. It also explores the structural inequalities, which were made evident during the pandemic, that continue to affect women, children, and LGBTQ+ persons disproportionately.

Chapter 2: The Significances of Suffering
chapter abstract

In the 1980's the idea of health and health systems as marketplaces spread in the US. Through international institutions, neoliberal policies relating to privatization, deregulation, and labor flexibilization, spread in the rest of the world. The 1980's also saw the emergence of the HIV/AIDS pandemic, which was initially treated in the West as a gay "plague," stigmatizing marginalized groups. HIV/AIDS activists changed the prevailing narrative and, through advocacy, forced changes in institutions, laws, and research practices. In many ways, the ongoing struggle for human rights in health has continually sought to change the political economy of avoidable suffering. This chapter argues that these discourses of health and suffering dictate how we conceptualize what we owe to one another as human beings.

Chapter 3: Diverging Parables of Progress
chapter abstract

The trans-sectoral UN conferences of the 1990's advanced understandings of the implications of the interdependence of all human rights, including sexual and reproductive health and reproductive rights. They endorsed "human development" as opposed to simply "development as economic growth." Following the collapse of the Berlin Wall in the early 1990's, social and transformative constitutionalism encoded new ideas of social contracts. However, the second parable of 'progress in the world' during the 1990's was very different. Under a narrative of state modernization, intensifying economic integration, financial deregulation, and waves of privatization, among other things, the spaces in which these rights could be realized closed. Understanding both sides of the story is essential for understanding how rights can be vernacularized (translated in socio-legal practice) and effectively enjoyed in practice. Rights set out in international law are essential for strategic rights praxis.

Chapter 4: Dystopian Modernization
chapter abstract

Using a case study from Fujimori's autocratic Peru and a subsequent maternal death, 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. A focus on reducing maternal mortality reinforced the recursive relationships between national and international levels in reproductive governance, as development paradigms shifted from the political and institutional changes emphasized in the 1990's to narrow, depoliticized goals, targets, and indicators under the Millennium Development Goals. However, subsequent political and legal mobilizations by indigenous women and allied activists in Peru demonstrates the impact of using rights in constructivist ways to enable subaltern groups to appropriate their agency over their bodies and the institutions that govern their lives.

Chapter 5: Global Crises, Pandemics, and Norms
chapter abstract

This chapter analyzes how social and legal human rights activism produced a global movement for enforcing the right to health in relation to HIV/AIDS in South Africa, relating that struggle to the problem of unequal access to vaccines and therapeutics during the COVID-19 pandemic. Earlier advocacy showed that it was possible to remake the architecture of global health institutions to include a wider understanding of rights holders. However, global health governance became permeated by philanthro-capitalists and corporate influences. International human rights norms, institutions, and procedures related to health proliferated, and an increasing tendency toward positivist norms and institutional bureaucracies lead to fragmentation. The chapter raises cautions about these positivistic approaches, which may displace attention from the structural impediments to achieving global health justice.

Chapter 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 elucidating health rights and the human rights-based approach (HRBA) to health. The application of an HRBA in Brazil to follow-up the Alyne decision is described, along with the danger of using HRBAs to paper over power differences. The question had become how human rights strategies have been and will continue to be adapted given political institutional dynamics in health and legal systems. Critical lessons emerge from what has worked and what has not in the design of structural judicial remedies and HRBAs. It is argued that health rights cannot be advanced without meaningfully democratic processes and institutions that can be held accountable.

Chapter 7: Power, Politics, and Knowledge
chapter abstract

The chapter argues that circumstances such as forced migration/displacement, deepening social inequality, climate crises, and conflict, which swept a wave of populists into power, also reflected a crisis in the legitimacy of democratic institutions that had been building for decades. Neoliberal architectures of development assistance and global governance constrained multilateral cooperation during the pandemic, producing a "vaccine apartheid." The chapter argues that advancing health rights depends upon re-envisioning health systems so they function fairly in plural societies, even when there are deep disagreements over which claims the state should recognize and prioritize. The chapter argues for experimentalist legal and social movement strategies to address the national and global dimensions of shared responsibilities for social determinants of health care and a revised system of development finance based on global public investment.

Conclusions: The Struggle for the World We Want
chapter abstract

This chapter begins with a vignette from the Poblete Vilches v Chile case at the Inter-American Court of Human Rights, in which the Court for the first time enforced health rights independent of a nexus with civil and political rights. The conclusion then goes on to review achievements in applying human rights in health that were summarized within each of the chapters of the book, as well as where efforts have fallen short. After listing principal take-aways from each of the book chapters, the author concludes by sharing reflections on how we should approach engaging in transformative human rights praxis with respect to health.