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, New York, March 27, 1958
I graduated from law school with an Echoing Green Foundation Fellowship to bring human rights cases from Mexico to international tribunals and treaty monitoring bodies.1 One of the first cases I worked on involved the annihilation of nearly an entire family. Francisco Quijano Santoyo was allegedly engaged in drug trafficking and was involved in a shootout that resulted in the death of a police officer. The next day, antinarcotics agents from the Federal Judicial Police (PJF, according to the acronym in Spanish), the Mexican equivalent of the FBI, surrounded the family’s house in Mexico City and exterminated two of three other brothers: Jaime and Erik. In human rights language, that kind of murder by state agents is referred to as “extrajudicial execution,” a rather technical term for the bloodbath that occurred in this case.
Another brother, Héctor, was injured and detained after the shootings and eventually tortured to death. It was a particularly brutal torture; the PJF agents cut out Hector’s tongue with a small knife and attached electrodes to various parts of his body. Eventually he died of cardiac arrest. But what made Héctor’s torture almost unimaginably horrendous to me was that the PJF forced his mother and sister to listen to and watch parts of it, which is of course a torture in and of itself.
Six months afterward, Héctor’s father, Francisco Quijano Garcia, who had been campaigning publicly for an investigation into the deaths of his sons, was himself disappeared; his body was found months later at the bottom of an unused well. The police accused an associate of Mr. Quijano Garcia, but the man, who was convicted of homicide in the case, stated he had confessed under police coercion.2
I got to know Héctor’s sister, Rosa, quite well. We were about the same age. We’d both just gotten married. I felt like my adult life and career were just beginning. Her life as she knew it had just ended; her world had been shattered.
I learned from Rosa something that I have heard repeated by torture victims too many times to count in the intervening years: the most awful thing about torture is not the physical pain, as intense and unbearable as that can be; the most awful thing about torture is that it destroys a person’s sense of herself and her world.
Elaine Scarry has described the “unmaking of the world” that occurs through torture.3 Focused on the effects of the physical pain, Scarry explains that “as in dying and death, so in serious pain the claims of the body utterly nullify the claims of the physical world.”4 Anyone who has experienced it knows that intense pain makes us small; rather than feeling our bodies in space, space and time are limited by our bodies. The physical pain experienced by torture victims destroys the world they project as well as the one they know. “This unseen sense of self-betrayal in pain, objectified in forced confession is also objectified in forced exercises that make the prisoner’s body an active agent, an actual cause of his pain.”5 Pain, as Scarry writes, is a central part of that destruction of one’s world.
But, as I learned from Rosa, personally experiencing physical pain is not always a prerequisite. Seeing a loved one being tortured and being impotent to stop the pain can also unmake one’s world. In Prisoner Without a Name, Cell Without a Number, Jacobo Timerman relates his own experiences as a prisoner