Power, Suffering, and the Struggle for Dignity. Alicia Ely Yamin
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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