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.
In the 1980s, when then-President Ronald Reagan’s deinstitutionalization of patients in psychiatric hospitals, coupled with cuts in social services, resulted in approximately 140,000 mentally ill people living on the streets in cities across the United States, my mother’s reflective comments took on a special significance.27 My brother had long struggled with mental illness, moving in and out of private institutions. In looking into many of the faces of the people who found themselves suddenly living on the street, it was impossible for me not to reflect on the arbitrary twists of fate that led to the possibility of a life of dignity for my brother compared to a life of squalor, hopelessness, and degradation faced by so many others. It was impossible to maintain the pretense that there was anything essentially different about my brother—or about us as a family—that justified the difference in outcomes, or conferred protection from the fear and loathing with which people with mental illness are routinely regarded in the United States, as well as in other places around the globe.
I argue throughout the rest of this book that defining health as a question of human rights forces us to examine how we make sense of and respond not only to our own suffering or that of our close family and friends but also to that of others, including those living very far away. As humans, we instinctively try to give meaning to our losses as well as to our fulfillment, to create narratives about what has happened to us. Too often we use a kind of self-interested, albeit un–self-conscious, logic about when suffering is “bad luck,” when there is some “implication that God was a party to the outcome,” or when tragedy is simply inevitable because that is the way things are “in those places” or “those cultures.”28 I want us to question that logic.
For example, when U.S. missionary Dr. Kent Brantly came back from Liberia with Ebola in 2014 and was cured at Emory University Medical Center, he gave a news conference thanking God for his survival.29 Undoubtedly inadvertently, the implication was that God may not care so much about the thousands of Liberians and West Africans who did not survive. But God did not cure Dr. Brantly; what cured Dr. Brantly was excellent medical care, coupled with probably an already stronger immune system than many undernourished people in West Africa had.
And I want us to question when narratives are created and too often embedded in laws, around whose suffering matters. For example, a thirteen-year-old girl is sexually assaulted by her uncle, but for her to choose to have a life plan that does not include the fetus she was forced to carry is “evil and selfish,” imposing suffering on the innocent “child.” And isn’t it possible that a sex worker—female, male, or trans—also suffers when raped and has a right to bodily integrity, as well as labor protections?
But I also want to be very clear: I do not believe that human rights are fundamentally at odds with all religious traditions. There is no question that pain, sorrow, and suffering are part of this life, or a cycle of lives. I do not reject the notion that there can indeed be a value in suffering.30 Any parent knows that it is a mistake to try to protect a child from all disappointment and pain. After all, resiliency is crucial to our development as human beings. The needless suffering caused by unfairness in our societies and our world is the subject of this book. And unlike the “glad tidings of great joy” promised in the Bible or other blessings and enlightenment that entice people in an afterlife, a human rights framework emphasizes a universal claim to dignity in this world. It is not redemption but justice that I argue a human rights framework offers.
At the same time, taking seriously the ways in which power structures suffering within and between countries requires rethinking narrow human rights frameworks as relating only to a small slice of civil and political issues, a view that continues to prevail in much of the world. Taking suffering seriously calls for us to challenge what those conceptions of human rights say about our understanding of the role of the state, the demands of justice, and, ultimately, our ways of being together in this broken world.
PART I
Starting Points
Chapter 1
Dignity and Suffering: Why Human Rights Matter
We accord a person dignity by assuming … they share the same human qualities we ascribe to ourselves.
—Nelson Mandela, speech, Cape Town, South Africa, May 10, 2004
Where, after all, do universal human rights begin? In small places, close to home—so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person: the neighborhood he lives in; the school or college he attends; the factory, farm or office where he works. Such are the places where every man, woman and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.
—Eleanor Roosevelt, speech, United Nations,
