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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 in a clandestine prison during the Argentine Dirty War. He speaks particularly to the experience Rosa had in Mexico:

Nothing can compare to those family groups who were tortured often together, sometimes separately but in view of one another, or in different cells, while one was aware of the other being tortured. The entire affective world, constructed over the years with utmost difficulty, collapses with a kick in the father’s genitals, a smack on the mother’s face, an obscene insult to the sister, or the sexual violation of a daughter. Suddenly an entire culture based on familial love, devotion, the capacity for mutual sacrifice collapses. Nothing is possible in such a universe, and that is precisely what the torturers know.⁶

Torture destroys any possibility of human agency in the victim through its physical effects; but it also destroys the narrative we construct to make sense of ourselves emotionally and psychologically.⁷ It is this shattering of human agency—and, in turn, of human dignity—that lies at the core of torture and makes it the quintessential abuse of human rights.

In this chapter, I discuss understandings of human dignity, the link between health and human rights, and why human rights matter. The equal dignity of all people is the basis for the notion of universal human rights. Dignity requires the conditions that enable one to govern one’s self and exercise ethical as well as physical independence within a specific social context; it also requires us to respect the humanity in others.

There is an important link between torture—the classic violation of human rights and dignity, defined in more detail later in this chapter—and health, in terms of both the severe physical and psychological impacts on victims as well as the frequent use of specialized knowledge by health professionals in carrying it out. Moreover, some abuses in health care—through the manner in which services are inflicted and through the denial of treatment—rise to the level of what is considered “torture or cruel, inhuman, and degrading treatment” under international law. The common thread among these different facets of torture and inhuman treatment is that they stem from, and result in, a denial of the full humanity of the victim.

I go on to argue, however, that confining our focus on torture to the actions of state agents, whether police or health personnel, reflects an inadequate conception of human rights and state responsibilities—especially if we are concerned about the health of women and children. Women and children overwhelmingly face abuse in the private sphere, and applying a human rights framework to health must enable us to redress that suffering. The annihilation of self that occurs when an adult is tortured by strangers is only one kind of assault on dignity; it can be just as awful when children are raised to internalize a sense of themselves as inferior or defective—a sense of themselves as less than fully human or even deserving of abuse—before they are able to acquire any degree of autonomy. Thus, human rights frameworks need to be empowering, as well as protective, of agency across multiple spheres.

Human Dignity: A Universal Concept with Varying Conceptions and Implications

Recognition of the dignity inherent in all human beings is the basis for human rights.⁸ Across countless cultures and philosophical as well as religious traditions, there is a concern for the “equal dignity of the human person,” which is set out in the Universal Declaration of Human Rights and in many other international documents. Dignity has been assailed as meaning different things to different people. As the late legal philosopher Ronald Dworkin argues, dignity has fallen into “flaccid overuse.” Yet, at its core, the principle of dignity is most often explained in terms of requiring that people be treated as ends and not mere means. Thus, torture is the ultimate example of reducing victims to being means—means to obtaining information, exacting revenge, or expressing discrimination toward or contempt for a certain group.

The liberal philosopher Immanuel Kant was a leading articulator of this meaning of human dignity: “Everything has either a price or a dignity. Whatever has a price can be replaced by something else as its equivalent; on the other hand, whatever is above all price, and therefore admits of no equivalent, has a dignity. But that which constitutes the condition under which alone something can be an end in itself does not have mere relative worth, i.e., price, but an intrinsic worth, i.e., a dignity.”⁹ Kant’s insight has implications for how we relate to others as well as to our own lives. That is, if life has objective, intrinsic value, then it follows that both your own life and the lives of others have that value. It is not just you who can possess dignity while other human beings are slaves. Out of respect for your own dignity, you must treat yourself as an “end”—or an independent subject. At the same time, out of respect for the dignity of others, you must treat them as ends in and of themselves, and not as means for your own benefit. Kant’s notion that we should be able to universalize how we wish to be treated implies that achieving dignity in one’s own life requires respect for humanity itself, which is fundamental to the concept of universal human rights.

Many scholars have pointed out a conceptual dilemma here: if dignity is intrinsic, it should not need protection through laws and policies.¹⁰ Yet violations of human rights, such as torture, clearly constitute affronts to dignity, and the purpose of reflecting human rights in law both at the national and international levels is to protect people’s dignity. Despite this theoretical dilemma, I believe that, on a commonsense level, the notion that every human being possesses an intrinsic worth and that this worth should be recognized by other human beings and enshrined in our laws and social arrangements can be compatible with the idea that, sadly, too often it is undermined in practice.

Much has been written critiquing the Westernized individualism of modern human rights, sometimes with ample justification. However, this concept—the fundamental dignity of all human beings and the prescription to treat people as ends and not means—is not just a Western philosophical concept. Kant’s proposition that we cannot adequately respect our own humanity unless we respect the humanity in others has strong resonances with a number of religious and cultural traditions. The Bible’s “Golden Rule,” for example, calls on people to treat others as they would want to be treated. Similar notions regarding seeing others as full human beings can be found in the beliefs of Jewish thinkers, such as Martin Buber, as well as in Sufi and Hindu traditions. Buber writes about the distinction between relationships grounded in treating others as “Its” or objects—and fuller “encounters” with others as subjects or “Thous.”¹¹ In a similar vein, the rule of dharma in Hinduism basically states, “One should never do that to another which one regards as injurious to one’s own self.”¹² “Namaste,” the common Indian salutation, is a humbling acknowledgment of being on equal standing with the person greeted.

In African traditions, there is the notion of “Ubuntu,” which can be roughly translated as “I am because we are.”¹³ Ubuntu is found in diverse forms in many societies throughout Africa; among the languages of East, Central, and Southern Africa, the concept of Ubuntu captures a world view about what it means to be human.¹⁴ Desmond Tutu, the South African archbishop emeritus and Nobel Peace Prize laureate, explains that, on an interpersonal level, Ubuntu means that every person’s humanity is bound up in each other.¹⁵ For his part, the scholar Kwame Anthony Appiah, who has West African—Ghanaian—roots, associates his attachment to the idea of dignity with his father, “who grew up in Asante, at a time when the independence of its moral climate from that of European Enlightenment was extremely obvious.”¹⁶ Appiah goes on to note that those Asante conceptions depended on a sense of one’s own dignity being connected to the dignity of one’s fellow citizens.¹⁷

In stressing universality, I do not want to overstate the claims to uniformity: the essential human qualities that support a claim of worth, dignity, and shared humanity vary across philosophical and religious traditions. In some, there may be a concern for the sentience and the capacity of fellow humans to suffer (and in some philosophers’ arguments this would extend rights to animals as well);¹⁸ in some religious traditions, there may be a focus on the quality of having a soul. In a modern human rights framework, dignity is reflected in the human capacity for agency, or self-government, which enables a person to make (and take responsibility for) choices and decisions about one’s self and the course of one’s life.

The kind of self-government necessary for human dignity need not—and, in my view, should not—be understood as autonomy in a vacuum, isolated from societal context. This book is not a philosophical treatise on the nature of our constitutive attachments to others or the voluntariness of our relation to our own ends, which are deeply contested among different philosophical traditions. I believe that both extremes—excessively individualized rights schemes and the kind of cultural relativism that rejects the plasticity of human social arrangements and dignity as a value—are overly rigid.

On the one hand, neither communities nor cultures are stable and monolithic. Reified assertions of unchanging cultural norms empty them of their political content and disconnect them from the realities of how they are used to prop up all sorts of inequitable social norms and power hierarchies.¹⁹ We must recognize not only that communal ideals shift over time but also that the notion of a community as a closed circle of group harmony is also false and disregards the multiple identities that we each carry within ourselves.

I am the product of two different religions, national and class backgrounds, and ethnicities, and therefore it may be particularly easy for me to see the false necessity of ascribing one particular identity to any given individual. More generally, however, rigid notions of identity—of gender identity, for example—disregard the multiplicity of meanings that a particular identity (such as gender) has for diverse people. Indeed, the construction of collective identities, based on gender, as well as ethnicity, religion, and race, for example, is a continual and ongoing process, not one definitive event with constant flux stemming from the inherent conflicts within each group.²⁰ As Kant proposed, we humans have the capacity and duty to examine our conscience, which unites out thoughts and feelings, and that capacity can allow us to resist dominant moral codes and create the possibility for reform.²¹ If we believe in human dignity and the capacity of human beings for choice and agency, it follows then, as I discuss in later chapters, that we cannot accept that identities and roles imposed on people are immutable. In the decades of my doing this work, there have been many times in the most “traditional cultures”—from deep in the Amazon to remote African villages—that I have witnessed transformations in self-understanding about the role of women, which in turn produced changes in behavior with spouses, children, and others, and eventually led to modifications of expectations and group practices. Or sometimes it is judicial decisions, such as the Atala decision by the Inter-American Court of Human Rights, that can destabilize social narratives of identity even in a devoutly Catholic context such as Chile regarding the assumption that the “best interests of the child” means a lesbian cannot have custody.²²

On the other hand, I also recognize that true self-government requires the power to make meaningful decisions for one’s self within the thick networks of relationships in which we actually live. This requires a conception of being human that acknowledges that we are all embedded in social contexts, and exercising ethical independence in our lives requires navigating the relations in those contexts. As philosopher Charles Taylor argues: “Discovering my own identity doesn’t mean that I work it out in isolation, but that I negotiate it through dialogue, partly overt, partly internal with others.”²³ A dynamic relationship and mutual dependence exists between an individual and the conditions as well as between an individual and other people—children, sexual partners, community members, and so on—that allow an individual to develop into a full person.²⁴

Throughout the rest of this book, I argue that a human rights framework based on a notion of dignity as including a respect for the humanity in others contains within it an understanding of our inescapable interconnectedness as members of multiple communities and societies. That interconnectedness, in practice, is shaped by different power relations that affect the possibilities for some people to live with dignity, and in our invariably gendered, racial-ized, class relations, our identities are enacted and reenacted continually in ways that can reinforce or can transform the status quo. Therefore, experiencing dignity is inextricably linked with participating in (re)shaping the conditions of our society, and with who gets to count as a full and equal member.

The narrow liberal idea of rights based on atomistic autonomy is, as we discuss in this and later chapters, connected to an idea of the liberal state. In the nineteenth century, traditional liberal state, male, property-owning, adult citizens were conceived of as free and equal. The role of the state was seen principally in terms of preserving their autonomous liberty, through police, military, and judicial protections. A more modern conception of the state as a welfare state, or a “social state of law” (estado social de derecho), recognizes that the diverse citizens in a society cannot exercise their liberties freely, or participate fully in society, without some background equality in distribution of resources and opportunities. No subject more than health rights illustrates the need to adapt traditional rights analyses, as former South African Constitutional Court Justice Albie Sachs stated: “Health care rights by their very nature have to be considered not only in a traditional legal context structured around the ideas of human autonomy but in a new analytical framework based upon the notion of human interdependence. A healthy life depends upon social interdependence: the quality of air, water, and sanitation which the state maintains for the public good; the quality of one’s caring relationships, which are highly correlated to health; as well as the quality of health care and support furnished officially by medical institutions.”²⁵

This is the challenge of developing emancipatory rights frameworks concerned with dignity: they must navigate an understanding of our identities as socially constituted and yet also allow for individual agency; they must strike a balance between recognizing that identities are not preassigned, essentialist, and immutable, yet also not so fluid as to be readily changeable; and people must be protected by the institutions of the state, yet also must be empowered materially by the state and enabled to express different aspects of themselves freely.

Violations of Dignity and Rights: When Do We Stop Treating People as Fully Human?

Torture, as Dworkin writes, “is designed to extinguish that power [to make decisions], to reduce its victim to an animal for whom decision is no longer possible. That is the most profound insult to his dignity … it is the most profound insult to his human rights.”²⁶ That is precisely what happened to Héctor Quijano.

Conversely, it is impossible to torture someone whom one sees as a fully human being. It is not the case, as some people think, that torture is generally committed by sociopaths, untethered by conscience, but rather that humans have a seemingly infinite capacity to justify inhuman actions to ourselves. Sociologists and psychologists have studied the different conditions, at societal, institutional, and individual levels, under which certain people can be dehumanized by others to the extent that it leads to torture. For example, Erving Goffman writes about the “mortification of self” and breakdown of normal social behavioral expectations that occur in “closed institutions” such as military boot camps, prisons, or psychiatric hospitals.²⁷ Other scholars have pointed to the existence of a tendency to blame the victim, or what Ervin Staub calls a “just-world view”—the belief that the person being tortured must have done something terrible to deserve what is happening to him or her.²⁸ This was true of the atrocities committed by the military dictatorship in Argentina and the abuse committed by the police in Mexico, as well as the “enhanced interrogations” conducted by the U.S. government in Iraq, Afghanistan and elsewhere. It is not just evil people and psychopaths who torture other human beings; structural factors foster the dehumanization of a certain group of individuals and allow perpetrators to stop seeing the victims as fellow human beings. Genocide is the ultimate expression of the denial of humanity of an entire group or population.

Torture, although perhaps the quintessential violation of an individual’s human rights, is of course far from the only deprivation of civil and political rights that denies dignity and people’s ability to carry out life plans. When we lack the freedom to elect our government or the freedoms of association, information, and movement, or if we face detention without due process, our ability to govern our lives—and in turn our dignity—is deeply affected.

Historically, people have been treated as less than human on the basis of differentiation with respect to particular aspects of their identity, which is why nondiscrimination is a central tenet in human rights law. For example, the U.S. Constitution originally accorded slaves the status of three-fifths of a person.²⁹ And to this day, racial discrimination permeates U.S. society, police, and the criminal justice systems, as well as every point in the U.S. health care system.³⁰ To be born black in the United States, according to critical race theorist Patricia Williams, writing in the 1980s, is to “embody” an otherness in relation to being born as the white self, and it is a threatening otherness that must be controlled or repressed. To this day, we have examples in the media all the time of how being especially a young black male in America is still a marker of dangerousness to be contained, from Florida to Ferguson, Missouri. For “blacks”—as Williams deliberately referred to a set of social actors—rights are a “magic wand of visibility and invisibility, of inclusion and exclusion, of power and no-power. The concept of rights, both positive and negative, is the marker of our citizenship, our participatoriness, our relation to others.”³¹

In the Spanish colonies, there were theological debates about whether just the black slaves brought from Africa or both they and the indigenous people of Latin America lacked souls, because the possession of a soul was thought to define “humanness.”³² Historically, a narrative of femininity in parts of Latin America is deeply tied to a vision of criolla women of European heritage as “clean and modern” as opposed to indigenous women who were thought to be dirty and animal-like.³³

Women generally have historically been—and still often are—treated as less than fully human, as chattel or children or even on a par with animals.³⁴ Women in many countries are still denied the right to inherit land and are required to obtain consent from men for certain medical procedures. And throughout the world, cultural norms and practices regularly define women not in terms of their humanity but in terms of their sexuality, which is to be managed and controlled. Women are the objects of both desire and misogyny, and in seemingly equal measure seem to need to be protected or repressed, rather than treated as subjects with rights, including to sexual pleasure.

One principal way in which women’s ethical and legal subjectivity is diminished is through laws and practices that reduce them to mere means for reproduction and childrearing. As Betty Friedan said, “There is no … full human dignity and personhood possible for women until we assert and demand the control of our own bodies, over our own reproductive processes…. The real sexual revolution is the emergence of women from passivity, from thingness, to full self-determination and dignity.”³⁵ Among other courts, the Colombian Constitutional Court has explicitly used a “dignity” argument to strike down draconian abortion restrictions. In 2006, the court reasoned that to not leave any exceptions for the life and health of the mother, or for rape or incest, reduces the woman to being “a womb without conscience.”³⁶ The Argentine Supreme Court was even clearer in striking down restrictions on abortion in the case of sexual assault: “From the notion of human dignity comes the principle that establishes [women] as an end in an of themselves and not merely a means or instrument of reproduction.”³⁷

People with various disabilities have also been denied full human status by discriminatory laws as well as by social norms throughout history that dictate certain physical standards for humanness as well as define “normal” behaviors.³⁸ Indeed, it is only in the last twenty to thirty years that the international human rights movement has begun to take seriously the violations of dignity faced by people with disabilities, including mental disabilities. Laws reducing “imbeciles” and “lunatics” to some less-than-human status, depriving them of control over basic decisions in their lives, including reproduction, were more the norm than the exception historically, and they continue to be in force in too many countries.

Historically, laws enshrined distinctions between citizens and others of lesser status based on property ownership as well—and across much of the world today, we still consign vast swaths of humanity to being less than fully human in practice, if not law, merely because they are poor. Stop at virtually any traffic light in Dar es Salaam or Freetown or Mumbai or Lima—or a hundred other cities across the globe—and there will be an immediate assault of beggars parading their misery in exchange for a handout. We, the well-off, who walk along or drive by in cars with the windows rolled up, tend to look right through the beggars, avoiding their eyes. However, the destitute and ill—trapped by their seemingly inexorable invisibility as human beings—often go to lengths to make themselves seem more pitiful and deserving of charity than the rest. Societies in which we tolerate these manifestations of tremendous inequality and extreme poverty structure this relationship between the well-off and the very poor, fostering systematic dehumanization that makes dignity impossible. Confronted endlessly with this visual barrage of deformities and desperation, the people in the cars or rushing by on the streets invariably stop seeing the extremely poor as fully human but rather as objects that inspire compassion at times and undoubtedly contempt and loathing at others.

And one step removed from the street—on the web, on our TV screens, and in our newspapers—the masses of people displaced by war or earthquakes, starving to death, or stricken with terrible diseases, which should have been preventable, are paraded before us; CNN, Al Jazeera, and the BBC are constantly feeding us some new atrocity or humanitarian crisis, as our ability to empathize and see the people on the screen as equal human beings grows ever more tenuous.

In human rights we used to believe that simply drawing attention to a horror would be enough to make people take action. Yet, the spectacles of misery all too often fail to focus our attention on the ways in which our social and economic arrangements systematically create the situations in which some people are treated as means rather than ends—with grave effects on their health, as well as on their dignity. As Susan Sontag writes, “The imaginary proximity to the suffering inflicted on others that is granted by [these] images suggests a link between the far away sufferers and the privileged viewer that is simply untrue, that is yet one more mystification of our real relations to power.”³⁹

But in this inexorably interconnected world, we are not innocent spectators of suffering in our own countries or across the globe. For example, what if wages in a country are too low for laborers to exercise choice about their life plans while the wealthy live in palaces? And what if people in the United States or Europe are relying on the cheap labor provided in Guatemala to harvest sugar or in Bangladesh to make clothing—under conditions that make it impossible for them to live with dignity? Do we not owe those strangers the treatment that we would wish for ourselves, and shouldn’t we insist that our governments apply appropriate trade and labor regulations in the countries from which we import products? What level of concern for “the other” is feasible, or required by respect for human dignity, in our globalized world?⁴⁰ My intention in these pages is to encourage readers not just to have a knee-jerk reaction of sympathy, which as Sontag notes, “proclaims our innocence as well as our impotence,”⁴¹ but to explore how a rights framework might make us rethink what we owe each other as full human beings, through the laws and institutional arrangements we devise at national and global levels.

Dignity, Health, and Human Rights

Dignity, health, and human rights are intimately connected. In a classic 1994 article, Jonathan Mann and colleagues described three dimensions of connections between health and human rights. The first dimension relates to the health impacts that result from human rights violations—especially, in their discussion, civil rights violations such as torture. The second dimension involves the impact of health policies, programs, and practices on human rights—again in their original conception, with a focus in particular on civil rights. The final dimension, and one that I discuss at length throughout this book, involves the recognition that health and human rights are integral dimensions of, and can be complementary approaches to advancing human dignity and well-being.⁴²

Let’s start with the recognition that human rights abuses, such as torture, are not only violations of human dignity but also quite evidently bad for people’s health, as is clear from the Quijano case. As director of research and investigations for Physicians for Human Rights (PHR) in the 2000s, I supervised PHR’s investigation into the health effects of the so-called “enhanced interrogation techniques” that the George W. Bush administration was using on detainees in the “war on terror.” In 2006, the Bush administration was claiming that these techniques did not constitute torture because they did not meet the threshold of pain and suffering required under the UN Convention against Torture, which the United States had ratified and implemented through domestic legislation.

In day-to-day conversation, we often use the word “torture” quite loosely. In international law, Article 1 of the UN Convention against Torture sets out four essential elements of the definition of torture: (1) intentional infliction; (2) of severe pain and suffering (physical or mental); (3) for a specific purpose (that is, to obtain information, intimidate, punish, or discriminate); and (4) with the involvement, instigation, consent, or acquiescence of a state official or person acting in an official capacity.⁴³ The severity of pain and suffering must pass a certain threshold level. However, judging whether a specific action meets that threshold depends on all circumstances of case, including duration; intensity; physical and mental effects of the action; and gender, age, and state of health of the victim. The PHR investigation, based in part on in-depth interviews with former detainees, clearly demonstrated that the techniques used did constitute torture.⁴⁴

The investigation into these so-called enhanced interrogation techniques reinforced that, given the right circumstances, normal individuals have a seemingly infinite capacity for the basest of cruelties, often believing that such behavior is directed at achieving some higher objective—in this case, information about the “war on terror.” Moreover, medical professionals, despite having professional duties of loyalty to patients, are not immune from succumbing to instrumentalizing people to achieve some “higher” goal set out by the state.⁴⁵ Additional investigations by PHR demonstrated the extent to which health professionals—psychologists, in particular—had been involved in the development and application of the enhanced interrogation techniques.⁴⁶

The second dimension of Mann and colleagues’ paradigm involves the effects of health policies, programs, and practices on human rights. Quarantine, “shelter in place,” and isolation policies can certainly violate civil liberties and create discrimination and stigmatization, if not carefully tailored, which became all too apparent at different points in the Ebola outbreak that began to spread quickly in 2014 in West Africa. International law recognizes exceptions for public health and public order, and the Siracusa Principles and other international documents have been developed to provide criteria to reduce inadvertent discrimination and disproportionate restrictions on civil rights during public health emergencies.⁴⁷

For now, I want to focus on the centrality of not reducing people to means in a human rights framework, as we are concerned with people’s dignity. Syphilis experiments, for example, were systematically carried out for forty years on African Americans in the United States.⁴⁸ The Tuskegee Syphilis Study, conducted from 1932 to 1972, was a research study on the outcome of untreated syphilis on hundreds of African American men in Georgia. The study participants were essentially on a decades-long deathwatch, as the study officers did not treat their advancing and deadly syphilis. A fundamental distinction between a human rights approach to health and a conventional utilitarian approach is that whatever the objective may be—a cure for syphilis or the promise of some other medical breakthrough—it can never justify treating fellow human beings as mere means to that end.

Again and again, in health as well as more broadly, we see that the most egregious abuses are committed in the name of some higher purpose. Mann felt that inadvertent discrimination was so common in public health that it should be assumed, and need to be disproven.⁴⁹ Moreover, it is not coincidental that, as in the case of the syphilis study, research abuses commonly affect populations that are discriminated against, marginalized, or vulnerable.

It is important to note that the Tuskegee study represented an appalling breach of a number of ethical standards in public health, in addition to the human rights violations it entailed. And in the aftermath of the scandal it caused when the public realized what had been going on for decades, the United States adopted practices and institutions to manage the use of human subjects in research.⁵⁰ Almost all countries in the world now have some institutions that conduct ethics review of medical, public health, and social science research involving other human beings.

Torture and Cruel, Inhuman, and Degrading Treatment (and Other Abuses) in Health Care

The manner of provision of health care, as well the failure to provide health care, can result in practices that rise to the level of torture, or cruel, inhuman, and degrading treatment, as they are defined in international law. In the context of health care, steep asymmetries of power are inherent—consequently, massive suffering and dehumanization are all too easily accepted and even normalized. For example, labor-and-delivery wards across the world have distinctly veterinary qualities to the care women are being provided, where basic issues of privacy, respect, and common consideration for human dignity are too often lacking.

Also in the reproductive health care context, forced sterilization has been found to constitute torture.⁵¹ The UN Committee on the Elimination of Discrimination Against Women (CEDAW Committee), for example, has noted that decisions about one’s body and reproductive capacity are essential to being able to live the life one chooses, and depriving a woman of these capacities strips her of essential dignity.⁵² And again, it is no coincidence that discriminated against populations, such as the Roma in Slovakia and the indigenous women in Peru, who are already treated by society as less than fully human, can end up being targeted for sterilization by the health system.

Denial of access to treatment can also deny women of fundamental choices over their lives and has been found to constitute torture when such denial produces severe pain and suffering. For example, in the case of KL v. Peru, a young Peruvian girl was forced to carry an anencephalic fetus to term because of the interpretation of restrictive abortion laws.⁵³ After giving birth to a baby that had no brain, KL was forced to breastfeed the baby during the four days it lived. KL was later diagnosed with severe depression that required psychiatric treatment.⁵⁴ The UN Human Rights Committee found that Peru had subjected KL to “cruel and inhuman treatment” and reasoned that in preventing KL from having a therapeutic abortion, KL’s severe suffering was entirely foreseeable.⁵⁵

Denial of care can be direct, as in the case of KL, where it emerged as an open conflict between her petition and the decision of the hospital. But denial of care that rises to the level of “inhuman and degrading treatment” can also be achieved through laws, policies, and regulations in which there may be no open conflict between the patient and facility. For example, the denial of access to pain relief, if it causes severe pain and suffering, can be considered “cruel, inhuman or degrading treatment” under international law.⁵⁶ But there is a gap between international norms and national regulations, as well as between public and political attitudes. That millions of people around the world continue to die of cancer and HIV/AIDS and other conditions, in excruciating pain every year, is related to how we understand the cause of that suffering and the state’s responsibility for taking measures to redress it.

Let me give an example of what the denial of pain medication means to an individual person. When I was living in Peru I got to know Dolores, a young woman who lived in the Cono Norte section of Lima. Before any gentrification began, the Cono Norte was a large slum area far removed from the picturesque poverty that tourists like to snap photos of in rural villages. The area Dolores lived in was filled with bleak cement structures, half constructed and chaotically set out on unnamed, unpaved streets, made more gray by the perpetual foggy mist, or garrua,⁵⁷ that blankets Lima. It was a long time after she got sick before we knew Dolores had cancer. She coughed, her throat hurt, her glands were swollen. She saw doctor after doctor but was unable to get an accurate diagnosis—the doctors took her money and prescribed ineffectual cough syrups and antibiotics, and when these failed to work they told her it was a manifestation of psychological repression. She was told she would be cured if she could only learn to voice her anger. It got worse, she lost her voice, and it hurt so much to swallow that she stopped eating solids. Finally, she was diagnosed with esophageal cancer. By this time, it had metastasized; chemotherapy was ineffective. But even when she knew that she was dying, the health system still failed to provide her with the pain medication that might have allowed her to die with some dignity.

Dolores died in agonizing pain; having lost her voice, her face, disfigured by the agony, wore the perpetual expression she felt, frozen for weeks in a “howl” and reminiscent of the Norwegian artist’s famous painting.⁵⁸ Her parents had set up a bed for her in the room next to the living room. Although she had previously taken care of everyone else in the family, family members now took turns feeding Dolores through a tube, cleaning her bedpan, and washing her body so that it would not get sores. Dolores spent her last months unable to sleep and wracked by anxiety and depression, as well as physical pain. I visited Dolores multiple times as she deteriorated and witnessed the center of this family’s home become transformed into a site of grief and anguish. It was unbearable for me, let alone her parents and the rest of her family, to see her suffer so much—and to be completely impotent to alleviate any of her misery.

The intensity of Dolores’s pain, and that of many terminally ill patients like her, is as world-destroying as that inflicted in some forms of torture. Yet it need not be this way. Most of this book, like most of my work, is concerned with the conditions under which people are born and live, but dignity has everything to do with how people end their personal narratives as well. Palliative care is part of allowing people to die with dignity, as is the choice of euthanasia under some circumstances.

Even from a purely utilitarian perspective, dying in unbearable pain should not happen to anyone in the twenty-first century. Morphine is an inexpensive drug and although palliative care would not be prioritized by conventional cost-effectiveness measures, as the dying do not recover, health economists are beginning to rethink those metrics in relation to pain relief.

But some might argue that the state is not responsible for Dolores’s suffering in the same way that a state agent is when torturing, as in the Quijano case, because the source of the pain is internal to the person and not caused by the health care system. Yet it was completely foreseeable that Dolores would end up in such pain, and morphine is an economical medication that easily could have been administered to allow Dolores to die with dignity and with little or no pain. We expect the state to undertake a wide array of actions to prevent what are the predictable consequences of not providing pain medication. Consider, for example, that we call for our governments to provide traffic signals because the resulting motor-vehicle accidents and injuries in the case of not doing so are entirely foreseeable. Similarly, the omission of providing pain medication can be considered an affirmative act, an act for which the state should be accountable through administrative and legal mechanisms. Dying patients do not get access to pain medication because health care workers are not trained in pain management or because regulations on controlled substances prevent their prescription and accessibility in the health system.

How we understand the reason for people’s suffering is crucial to enabling us to apply transformative human rights frameworks to health. If morphine and other pain medications are cheap and effective and if the failure to make those medications available and accessible results in the suffering of millions of terminally ill and other patients every year, we need not accept that suffering as “natural” or inevitable. Once we see how this inhuman treatment is caused by human decisions it follows that the laws, policies, and regulations that fail to take account of the claims to dignity that people in immense pain are forced to endure must be changed as a matter of justice, not just compassion.⁵⁹ Under international human rights law, states have the obligation to prevent as well as punish and redress torture and cruel, inhuman, and degrading treatment.

Human rights groups have campaigned successfully to change laws and regulations regarding access to palliative care across multiple countries.⁶⁰ When Human Rights Watch and other organizations have done so, they have argued that first, it is reasonable to expect that a state will not interfere with the delivery of palliative care to a patient; that is, they will not create undue barriers, through regulations or otherwise, to access. Second, the state has an obligation to ensure the availability of essential medicines, of which morphine is one recognized by the World Health Organization. Third, all states should implement a national public health strategy and plan of action; even if they cannot provide pain medication to everyone immediately, palliative pain relief should be part of that strategy and plan of action. And fourth, states are obligated to train their health personnel in pain management, which is part of making the medications accessible in practice. If these steps were instituted across the world, millions of people would be saved immeasurable suffering.

Torture and Suffering in the Private Sphere

One way to expand the domain of rights is to reinterpret both what it means to act and how we understand causal responsibility. Inaction by the state should be seen as action when, as in Dolores’s case, the effects of such inaction are entirely predictable and preventable and we can identify reasonable measures for the state and other duty-bearers to take. Another way to expand rights and the responsibility of the state is to expand our consideration of assaults on dignity experienced in the so-called private sphere.

As I mentioned, in a narrowly circumscribed liberal paradigm of rights, freedom is seemingly exercised in a vacuum. Individuals in the liberal state are assumed to be “free” so long as the state does not force them to do something against their will. This is how we have traditionally thought about the right to be free from torture—as a shield from police (as in the Quijano case), as well as other state agents, including those in the health sector. Rights are conceived, in Roberto Unger’s words, as “a loaded gun that the right holder may shoot at will in his corner of town.” This view of rights in terms of isolated autonomy largely construes society and community as artificial constructs—rather than as processes through which our full identities emerge as individual human beings, as I suggested earlier.⁶¹

The idea implicit in such a view, that “every man’s home is his castle”—that rights only protect from infringements in the rigidly defined “public sphere”—is particularly inapposite for women and children who suffer the most direct violations of their rights within the “private sphere” of the home. For decades, feminists have pointed out that it is impossible to establish a true democracy in a society if each home is a dictatorship within which women have no rights. The “personal is political”—the “private sphere” is porous, and abuses of power exercised in the private sphere do not allow certain people to be genuinely free in any sphere of their lives. The same is true for how we raise children. The realization of children’s rights requires many public and societal changes. But it also fundamentally requires changing relationships within families so that decisions taken in children’s names or on their behalf are justified to them, and justifiable in terms of their “best interests.”⁶²

Taking seriously the suffering of women, children, sexual minorities, and others requires a shift in the conception of rights and ensuing state obligations from the way in which they were set out in theories of the traditional liberal state. For example, both women and children are far more likely to face cruel, inhuman, and degrading treatment from domestic abuse than from police officers. In Tanzania, for example, three-quarters of children are subjected to physical or emotional abuse by the age of eighteen.⁶³ Nearly a third of girls are subjected to sexual abuse,⁶⁴ and not just in resource-poor settings, or the “developing world.” In the United States, in 2014, when it came to light that pro-football star Adrian Peterson had inflicted a “good old-fashioned whoopin’” on his four-year-old son, many rose to his defense as merely standing up for traditional authority, despite the sequelae of that punishment resulting in the child’s treatment in the emergency room.⁶⁵ This kind of torture is often every bit as brutal as that suffered at the hands of state agents and, more often than not, children are witnesses to the violent abuse of their mothers or siblings—just as in the Quijano case, as Héctor’s mother and sister were forced to be. But in “private” settings—schools, homes, churches—the victims are often forced to see or even to live with the perpetrators, day in and day out.

International law, as well as domestic law in many countries, has evolved to address the obligations of states to protect people from abuses within the private sphere. For example, the UN Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), promulgated in 1979, and the Convention on the Rights of the Child, which was promulgated a decade later and as of 2014 has been ratified by every country except for the United States, South Sudan, and Somalia, transcend this rather artificial public-private divide and call for states to take responsibility for changing social practices that affect women and children, respectively.⁶⁶ Subsequent normative development takes this evolution further, including extending obligations of nonstate (that is, private) actors.⁶⁷ Moreover, in most countries there are national laws against domestic violence, at least against women if not children; and in some there are criminal prosecutions of perpetrators, and NGOs and agencies dedicated to helping survivors.

An enormous gap remains, however, between what the laws say and the pervasiveness of these forms of torture and abuse in practice.⁶⁸ Just as with other forms of torture and inhuman treatment, the health impacts of intimate partner violence (IPV) are pervasive and irrefutable. Physical impacts of IPV include high rates of arthritis, chronic neck or back pain, chronic pelvic pain, stomach ulcers, hypertension, and frequent headaches.⁶⁹ Some of the mental health effects include higher rates of depression, anxiety, post-traumatic stress disorder (PTSD), suicidal ideation, and substance abuse.⁷⁰

Perhaps even worse, women and children who suffer from domestic violence too often believe they deserve the torture to which they are continually subjected. For example, in a global survey conducted in 2005, approximately two-thirds of women who had been subjected to domestic violence believed that it was appropriate for their husbands to hit or beat them for reasons that included not completing housework, disobeying their husband, refusing sex, and actual or suspected infidelity. A husband’s most common justification was suspecting a wife of being unfaithful.⁷¹ Further, women who are subject to abuse have little or no control over household resources, and little education.⁷² Therefore, their opportunity structures severely limit their ability to exert agency.

In the case of domestic violence against children, it is often not that the torture shatters an already formed world or a fully constructed sense of identity; rather, emotional, physical, and sexual abuse prevents them from forming a sense of themselves as full human beings in the first place. Sometimes such abuse relates to condemning or castigating a child’s expression of sexuality or gender identity as he or she is just beginning to have a sense of how that fits into his or her personhood. As I have stressed, we human beings construct the meaning of our lives every day through the small interactions we have with the people around us.⁷³ When people or society mirror a confining or contemptible picture of themselves, it ends up, as British sociologist Steven Lukes notes, “imprisoning them in a ‘false, distorted and reduced mode of being.’”⁷⁴

This process of internalizing domination is what leads so many girls—and members of sexual minorities and other marginalized groups—to see themselves as less than full human beings, with no claim to equal dignity. These are often the girls who then tend to believe they “deserve” to be beaten or neglected or abused in other ways as women; these are the members of sexual minorities who end up living under a cloak of shame and self-loathing. Recognizing this process of internalized domination, and its enormous health consequences, demands that our rights frameworks not only provide protection from abuse and access to entitlements, but also rethink the resources necessary to overcome internalized barriers and thereby create new opportunity structures for people to claim their dignity.

Changing laws and institutional practices is an important part of changing the common script through which we create our material and social realities as is ensuring equal access to endowments such as education and employment. But part of applying an empowering human rights framework to health and promoting a human rights culture must also entail changing the mirror that is held up to our private worlds, as those mirrors also create narratives for our lives and the conditions for developing our identities. Transforming our societies so that everyone can be accorded dignity requires actively working through both education systems and campaigns targeting popular culture to change how we see and relate to one another within those “small places”—close to and within our homes—“where human rights begin.”

Concluding Reflections

The Quijano case as it developed was just the tip of an iceberg, which allowed me, together with Mexican colleagues, to bring a case in which we documented how PJF agents were involved in repeated instances of torture and other abuses of fundamental human rights. Yet, rather than being investigated or prosecuted, the perpetrators were transferred around the country, and even sometimes sent to serve on UN peacekeeping missions. The case created a scandal when the revelations were made public to a U.S. congressional committee holding hearings on the possibility of the signing of NAFTA and to the UN Committee Against Torture, which subsequently issued a scathing finding.⁷⁵ Other outrages also surfaced around the same time with respect to the PJF. Eventually, the then–attorney general of the country, Ignacio Morales Lechuga, stepped down and was replaced by the then-director of the National Human Rights Commission, Jorge Carpizo MacGregor. The PJF agents named in the report were suspended or fired, if not fully investigated or sanctioned for the abuses they had committed. In terms of broader reform, the National Human Rights Commission instituted a policy of tracking all agents allegedly involved in human rights abuses, which it continues to do to this day.⁷⁶ Of course, torture and abuse by the PJF did not stop there; indeed, over the years with increasing drug-related activity in Mexico, it may have increased. But that is the constant challenge of human rights work, and it does not mean that holding some officials to account and changing policies is meaningless. Far from it; it shows us that incremental changes are possible—and, as I argue throughout this book, these incremental advances can trigger further changes and open different spaces that lead to new struggles, often with different sets of actors, but also can lead to greater transformation.

During the years I lived in Mexico, Rosa slowly began to piece together fragments of her broken world. She and her husband moved out of Mexico City to a resort community. They opened a business renting jet skis and diving equipment to tourists. She got pregnant and had a child. Nothing would ever be the same again, but she managed to reestablish a kind of equilibrium. If someone met her in later years, it might not even occur to them that Rosa had not always been this woman who engaged in easy pleasantries with her tourist clients, that there was a time when she had been a very different woman, with different dreams for her life. If anything, understanding what had happened to her family as an injustice and having it recognized and acknowledged publicly as a flagrant violation of fundamental human rights enabled Rosa to make meaning out of the horror, and in turn to move on.

I got to know another family who was denied even that level of emotional closure. My husband and I lived in Mixcoac—a working-class neighborhood of Mexico City, a block away from the Lucha Libre, the professional wrestling ring. It turned out to be the perfect neighborhood for a human rights lawyer. When PJF agents sat outside our door day and night, knocked out the streetlights and wiretapped the corner pay phone as well as our house phone (this was before cell phones), we acquired a certain status among the neighbors, all of whom had their own problems with the universally hated Mexican police. There were no washing machines at the time, and Gabriela came to Mixcoac to do our laundry once a week with her three-year-old daughter, Josefina, in tow.

Gabriela and her sister, Patricia, had had a tough life, growing up in an impoverished household often without enough food. Becoming domestic workers is often the only option for girls who grow up in the circumstances of Patricia and Gabriela. Armies of young girls across Latin America—and much of the rest of the world—work in conditions with almost no labor protections in practice. If they are fortunate enough not to be abused physically or emotionally, they can easily still end up being oppressed by their own insignificance in cruelly indifferent societies, as happened to Gabriela.

As we got to know each other, Gabriela increasingly confided in me about her abusive husband. Sometimes she would ask for a little extra money if she had to pay for a place for her and her daughter to sleep away from him for a night or two, and sometimes the results of an “argument” would be visible on her body. I urged her to move out on more than one occasion, but the reality was Gabriela could not afford to leave; she had no other options.

One week Gabriela failed to show up for work. Patricia called that night; she wanted to know if her sister had shown up. Patricia was worried. She said Gabriela had called her the day before saying that she was scared for her life; her husband had beaten her terribly and threatened to kill her. This was not the first time he had made such threats, and I tried to reassure her that Gabriela had likely taken Josefina away for a few days.

But Patricia’s worst fears proved to be correct. A few days later Gabriela’s body was found, having been beaten badly. Josefina was missing. Although we were told that there was physical as well as circumstantial evidence that pointed to him, Gabriela’s husband was never charged, an omission that seemed directly related to his being friends with the police in the district. Josefina was never located.

We stayed in touch, albeit sporadically, with Patricia and her daughter. I knew Patricia would never recover from the murder of the sister with whom she shared everything or from the disappearance of her niece. The years passed and Patricia dedicated herself entirely to her daughter, and she was as proud as any mother could be. But in some important way, the impunity in Gabriela’s murder and Josefina’s disappearance, and Patricia’s sense of powerlessness, had taken her life from her too; there was a background of grief that made her into someone she would otherwise not have become.

When I lived in Mexico, the impunity of the police and military for torture and other abuses, including homicides, was shocking. The security forces not only were not serving the protective functions they were supposed to fulfill in a democratic state but also had become predatory; it was largely the poor like Gabriela and others in the working-class neighborhoods such as Mixcoac, who suffered the toll of their abuses. Nevertheless, there is even greater impunity and, too often, public acceptance of poor people being mistreated in health facilities, and deprived of essential care. And despite tremendous advances, far too many women and children are subjected to abuse and neglect of all forms within homes—across not only Mexico but the world.

Applying a meaningful human rights framework to health requires transforming our narratives of people’s suffering, as well as transforming the ways in which power is exercised to deprive people of power and dignity, whether through acts or omissions and whether in public or private. In turn, as I discuss at length in later chapters, it requires identifying the contours of the state and societal responsibilities needed to transform those conditions, and the social, political and legal opportunity structures for different actors to do so.