Book review: Rethinking Health and Human Rights through Emancipatory Frameworks around Dignity and Well-being

Beatriz Galli

Power, Suffering, and the Struggle for Dignity, by Alicia Ely Yamin, Foreword by Paul Farmer, published by University of Pennsylvania Press, 2016

Alicia Ely Yamin’s book Power, Suffering, and the Struggle for Dignity is necessary reading for advocates, practitioners, and students from any discipline interested in understanding the intersection between human rights and health. It underlines the importance of applying a rights-based framework to health systems, policies, and laws that cause suffering, social inequalities and injustices in countries and regions around the world. The author examines the interdependence between social epidemiology, social medicine, public health, law, sexual and reproductive health, and human rights. She explores the interdependence between health and other human rights including the right to sexual autonomy, bodily integrity, and access to education, clean water, transportation, housing. She highlights the evolving field over time and how the emergence of new identities based on sexual orientation and gender identity demand a holistic approach to traditional human rights, as well as a more emancipatory rights frameworks based on dignity.

In analyzing the human rights-based approach (HRBA) to health, Yamin argues the importance of considering existing patterns of discrimination and inequalities in our societies, and how these patterns are reflected in our health systems. This approach considers health systems as core social institutions, which explains the need to move beyond conventional public health analysis and solutions in order to bring about a social transformation that can impact people’s lives, health, and well-being. It aims toward a social transformation for individuals most affected by power dynamics and is key in promoting transformative relationships between duty-bearers and rights-holders. It also incorporates the notion of accountability in relationships of entitlement, and obligations between, for example, providers and patients and policy makers and citizens.

In describing how a human rights-based approach operates, Yamin touches on issues largely invisible in traditional public health analysis, which is more focused on individual behavior and biological risk factors than the real conditions in which individuals and communities live and experience multiple and intersectional forms of discrimination. Yamin highlights issues relevant to our historical moment in time—a moment when the global movement for sexual and reproductive health and rights calls for the need to place peoples’ human rights and dignity at the center of the new sustainable development agenda. This approach is critical when considering public health emergencies such as the Zika epidemic, massive violations of women’s and girls’ sexual rights, high sexual violence rates, lack of access to safe abortion and contraception, and a host of other issues. It has been more than 20 years since the 1994 International Conference on Population and Development in Cairo, yet women and girls are still experiencing major consequences of states’ continued and systematic neglect in protecting sexual and reproductive health rights.

Sexual and reproductive health rights are central to the global health and development agenda, but the implementation of these rights at the national level has been slow, due to states’ failure in promoting incremental changes to the policy and legal environment. Yamin uses the debate over abortion laws as an example of how a health service, which is only required by women, can be denied based on moral grounds and religious views that create discriminatory barriers to health care, unnecessary suffering, and human rights violations.

Yamin argues that a woman, depending on her race, ethnicity, or where she was born and lives, may not have access to an enabling environment where she is able to exercise her basic human right to reproductive self-determination, including the right to make informed and voluntary decisions about continuing or ending her pregnancy, the right to personal integrity, the right to enjoy sexual autonomy, and the right to be free from avoidable death due to unsafe abortion. She states, for example, that even in countries where abortion is legal based on the right to privacy and autonomy, its implementation is disconnected from the social and economic conditions in which women can exercise these rights. This reality is reflected in the poor health outcomes of marginalized women and girls. It highlights the social and gender inequalities, and discrimination in health care access that continue to happen despite legal change or when governments are not held accountable to peoples’ human rights.

Despite some important public health advances, such as the worldwide decline in maternal mortality, countries are still facing high rates of preventable deaths due to unsafe abortion—especially in middle- and low-income countries, particularly those located in less-developed regions. Women in these societies lack access to safe and legal abortion and have to confront criminal laws, morbidity, or death when they challenge their fate as mothers and caregivers by choosing to end their unwanted pregnancies.

Yamin’s focus on social inequalities, cultural practices, and social norms are key aspects throughout the book. She demonstrates how these factors impact people’s experience of life choices, health rights, and well-being. According to the book’s central argument, enabling women to live with dignity requires “rethinking the nature of the problem as well as the solution.” This is particularly true for an issue such as maternal mortality, which should be seen not only as a medical problem and lack of access to good quality of care, but as a social and political issue. The author reflects on how health systems and political leaders have failed to value women’s health, and how they could instead prioritize women’s health needs through effective policy interventions and resource allocation.

Power, Suffering, and the Struggle for Dignity provides the reader with a strong evidence base demonstrating that suffering is a matter of injustice and not simply the result of fate or divine will. She shows how applying a human rights framework can enable us to shift our thinking and expand our understanding of harmful cultural practices so that we can challenge power relations, especially in such a contested field as sexual and reproductive health and rights. Yamin provides us with examples of successful remedies that have the potential to provide redress and an end to violations of fundamental human rights and dignity caused by extreme poverty and inequality affecting people’s health in practice. She describes how rights-based strategies developed through policy reform programs, law reform, litigation, and social mobilization have the potential to effect social change, while offering alternatives to address pervasive discrimination in health care settings in specific local contexts. Through these concrete examples, she illuminates how human rights are not just abstract principles, but can be materialized through transparent political decision-making processes, judicial decisions, political participation, structural changes, and resource allocations.

Yamin is a global leader in this emerging and evolving field of health rights that challenges conventional public health interventions and proposes new rights-based strategies for social movements as the way to achieve social change. The uniqueness of this book comes from her personal testimonies and reflections as a passionate advocate, which provide a rich narrative of her experiences where she has lived and worked. This close look at the reality in which people live when they are deprived of basic human rights such as sexual autonomy, bodily integrity, access to education, clean water, transportation, housing, and health care, makes us understand why social determinants of health, human rights, non-discrimination, gender equality, social justice, and dignity are inseparable concepts.

Beatriz Galli, LLM, is Senior Regional Policy Advisor at Ipas, Rio de Janeiro, Brazil.