The modern movement of human rights, born in the aftermath of the Holocaust in Europe, involves the world's first efforts, necessarily incomplete and partial, to define the societal preconditions for human well-being. For this reason, promotion of human rights became one of the four principal purposes of the United Nations (UN), founded in 1945. Subsequently, the Universal Declaration of Human Rights, adopted by the UN General Assembly in 1948, provided a list of those societal conditions considered essential for well-being, peace, and health.
The Universal Declaration of Human Rights and subsequent human rights treaties and documents describe what governments and societies should not do to people, such as torture or imprison arbitrarily or under inhuman conditions, and what governments and societies should guarantee for all people in the society, including shelter, food, medical care, and basic education. When and where human rights and dignity are respected, there will still be social distinctions, but all will be ensured of a basic minimum standard in which their individual potential can be freely and fully developed.
With the emergence of the AIDS epidemic, modern human rights discourse provided a coherent conceptual framework for identifying and analyzing the societal root causes of vulnerability to HIV, a common vocabulary for describing the commonalities that underlie the specific situations of vulnerable people around the world, and clarity about the necessary direction of health-promoting societal transformation. For the first time in history, in the context of the global HIV/AIDS epidemic, human rights issues are centrally important for the design and implementation of public health strategies for prevention and control of an infectious disease. The strategic linkage between HIV/AIDS and human rights has proceeded through two distinct phases, reflecting a deepening awareness of the complexity of interactions between human rights and health.
The first phase focused on the problem of discrimination, stigmatization, and marginalization of people infected with HIV, people with AIDS (PWAs), and members of population groups considered at high risk for HIV infection. Around the world, since the epidemic was identified, HIV-infected people and PWAs have been frequently subjected to various levels of stigmatization, covert and overt discrimination, and even violence. They have been excluded from school, work, scholarship opportunities, travel, marriage, housing, and access to medical and social services.
Such discrimination, although unfortunately typical of societal responses to epidemics, was identified as counterproductive in the setting of HIV prevention. Reports from communities and countries around the world indicated that when people had justified concerns about being identified as HIV infected, they avoided contact with the health and social service system; thus, the effectiveness of public health efforts to prevent HIV transmission was diminished. As a result, a public health rationale for preventing discrimination against HIV-infected people and PWAs was developed by the Global Programme on AIDS of the World Health Organization (WHO).
This approach, officially adopted by the general policy-making body of the WHO in 1988, did not result from an ideological commitment to human rights within the public health community. Rather, it reflected pragmatic concerns about the adverse effects of coercive approaches to HIV prevention. In essence, discrimination and other violations of human rights were seen as tragic and preventable effects of the HIV epidemic. Thus, for the first time in history, a firm and specific commitment to preventing discrimination against people infected and affected by an epidemic became an integral part of the global strategy for epidemic control.
The second phase of the relationship between human rights and AIDS started in the late 1980s and has been further refined during the intervening period. With the accumulated experience of HIV-prevention efforts along with observation of the progress of the epidemic, a connection was identified between the level of respect for human rights and dignity and vulnerability to HIV infection at both the individual and population level.
Appreciation of the connection between human rights and AIDS has emerged through the concept of vulnerability, or the extent to which people are, or are not, capable of making and effectuating free and informed decisions about their health. A person who is able to make and effectuate free and informed decisions is least vulnerable to HIV; the person who is ill informed and who has a limited ability to make and/or carry out freely arrived-at decisions is most vulnerable.
From this perspective, analysis focused on the societal preconditions for reducing vulnerability to HIV. The first efforts involved identifying factors that were grouped roughly into three categories: political/governmental, sociocultural, and economic. Political factors include inattention or a lack of concern about HIV/AIDS and governmental interference with the free flow of complete information about HIV/AIDS. Sociocultural factors involve social norms regarding gender roles and taboos about sexuality. Economic issues include poverty, income disparity, and the lack of resources for prevention programs.
Once identified, these contextual factors became potential objects of focused public health work and activism by nongovernmental organizations. Thus, specific governmental actions were challenged, specific social norms were highlighted and opposed, and economic constraints on successful HIV-prevention work were identified. Nevertheless, the effort to deal directly with these societal factors influencing HIV prevention had several important, limiting characteristics.
First, such efforts focused exclusively on HIV/AIDS, challenging, for example, a proposed regulation requiring mandatory HIV testing, discrimination against gay men in the context of HIV and insurance, or the lack of resources to sustain successful HIV-prevention programs. Second, this work lacked a coherent conceptual framework; consequently, economists, political scientists, anthropologists, and others promoted their specific disciplinary perspectives. Thus, there was no consistent and accessible vocabulary to speak of and to compare societal determinants of vulnerability among people as diverse as commercial sex workers in India, injecting drug users in the United States, street children in Brazil, and adolescents in sub-Saharan Africa. Without a coherent conceptual understanding and vocabulary, only the differences and local particularities were seen. Finally, the approach to the societal determinants of HIV vulnerability was essentially tactical, rather than strategic: there was no consensus about the ways in which the societal factors needed to change to reduce vulnerability to HIV.
Insight regarding the critical societal conditions was then derived from two lines of evidence: the evolution of the epidemic and an analysis of the reasons for inherent limitations in the existing HIV-prevention approach. First, further analysis of the evolving HIV epidemics in countries around the world revealed a feature of the epidemic that had previously been unknown, unknowable, and hidden. HIV has reached communities and countries in many different ways; where and among whom HIV entered defines the early history of the epidemic. Thus, in the United States and France, white gay men were first affected; in Brazil, first cases occurred among members of the jet set in Rio de Janeiro and São Paulo; in Ethiopia, AIDS was initially noted among the social elite.
However, with time, as the epidemic matured, it evolved and moved along a clear and consistent pathway that, although different in its details within each society, nevertheless had a single, vital, common feature. In each society, those people who, before HIV/AIDS arrived, were marginalized, stigmatized, and discriminated against became over time those at highest risk of HIV infection. Regardless of where and among whom it may start within a community or country, the brunt of the epidemic gradually and inexorably turns toward those who bear this societal burden. Thus, in the United States, the epidemic turned increasingly toward minority populations in inner cities, injecting drug users, and women. In Brazil, the HIV epidemic expanded rapidly, predominantly via heterosexual transmission, in the poor slums of Rio de Janeiro and Sao Pãulo. In Ethiopia, HIV became concentrated among the poor and dispossessed. The French have a simple term that says it all: HIV has become a problem mainly for les exclus, or "the excluded ones" living at the margin of society.
In addition, detailed analysis of limits and failures in existing prevention programs suggests how societal forces influence vulnerability to HIV. For example, married and monogamous women who receive the normal benefits of HIV-prevention programs such as information, education, access to testing and counseling, and condom availability may nevertheless be at risk of HIV infection. Indeed, in some countries, being married and monogamous is considered a risk factor for HIV infection.
To understand this apparent paradox, the real-life situations facing women must be appreciated. For example, the recommendations given to women (and men) to reduce the number of sexual partners as part of risk reduction fails, in the real world, for several reasons. First, many women's risk is related to their primary sexual partner's behavior. Second, having multiple partners may be necessary for survival. Third, women often lack control over their sexual relationships. In marriage, the pervasive threat of physical violence or divorce without legal recourse or legal rights to property may totally disempower a woman, even if she knows about AIDS, condoms are available, and she knows her husband is HIV infected. Clearly, therefore, the central issue is the inferior role and subordinate status of women, and the disadvantages created by society cannot be redressed through individually focused information and education or HIV-specific health services.
This relationship between how people are treated within a society, risk for HIV infection, and inadequate HIV/AIDS care is something that has been known for a long time, but it has been difficult to address directly. Yet, once the major determinants of vulnerability to HIV/AIDS, as with other health problems, were seen as societal, it became clear that because society is an essential part of the problem, a new analysis and action at the societal level would be required. In other words, because disease and society are so interconnected, attempting to deal with the disease without also influencing the society would be inherently insufficient.
Fortunately, entirely outside the domain of public health or biomedical science, a series of concepts and a framework for identifying the societal preconditions for health had been developed through modern human rights discourse. This discourse led to the recognition that, more than any framework inherited from traditional public health or biomedical science, the human rights framework offers public health a coherent, comprehensive, and practical framework for analysis of and action on the societal root causes of vulnerability to HIV/AIDS. Promoting and protecting human rights is therefore inextricably linked with the ability to promote and protect health. Although human rights progress obviously will not prevent all preventable illnesses or premature deaths, a greater realization of rights and respect for human dignity will reduce or even eliminate the major societal contribution to this burden of disease, disability, and death.
These ideas have challenged the traditional public health approach to HIV/AIDS prevention and control. Incorporating a human rights dimension into HIV/AIDS prevention means that, in addition to implementing strategies directed toward individual risk reduction, specific rights whose violation contributes to HIV vulnerability need to be targeted for action. These rights may involve the right to information, to equal status of women and men in marriage or its dissolution, to medical care, or to nondiscrimination. Public health must then work together with those official, nongovernmental, and private individuals and groups already struggling to promote respect for human rights and dignity within each society.
Human rights work in public health is not a substitute for traditional public health activities. Adding a human rights dimension to HIV-prevention work has major advantages and also creates several difficulties. Major advantages include acting at the deeper level of societal causes, so as to help uproot the epidemic; linking health issues with the mobilizing power of human rights; expanding the ability of people to see the connection between a rights issue and their health; enhancing the capacity for cross-disciplinary work within a larger commonality of interest; and revitalizing global thinking within the collective response to HIV/AIDS.
Some potential difficulties include the inevitable accusation that public health is "meddling" in societal issues that go far beyond its scope or competence; the unfamiliarity of public health workers with rights concepts and language; and a desire by public health workers to "own" the problem of HIV/AIDS. Finally, issues of human rights inevitably involve a confrontation with government and other loci of the status quo in each society.
Yet, because the goal of public health is to ensure the conditions by which people can be healthy, and given the evidence that societal factors are the dominant determinants of health status, it is clear that to work for public health requires working for societal transformation. Linking human rights with health offers a coherent vision and analysis for societal transformation and adds the critical societal dimension to traditional public health work, which, all too often, stops at the threshold of addressing real societal issues.
In summary, AIDS has become the crucible with which new ideas about the relationship between health and society are being tested and explored. The discovery of the relationship between health status and the extent of realization of human rights and respect for human dignity will not only help guide future, more effective HIV/AIDS-prevention and care strategies but also has already yielded valuable insights for a fundamental revitalization of public health in the modern world.
Feminism; Gay Rights; International Organizations; Queer Theory; Social Construction
discrimination, equality, freedom, human rights, United Nations (UN), Universal Declaration of Human Rights, World Health Organization (WHO)
Kirp, David L., and Ronald Bayer, eds., AIDS in the Industrialized Democracies: Passions, Politics, and Policies, New Brunswick, New Jersey: Rutgers University Press, 1992
Mann, Jonathan M., Daniel Tarantola, and Thomas Netter, eds., AIDS in the World, Cambridge, Massachusetts: Harvard University Press, 1992
Mann, Jonathan M., and Daniel Tarantola, eds., AIDS in the World II, New York: Oxford University Press, 1996
McKenzie, Nancy F., ed., The AIDS Reader: Social, Political, Ethical Issues, New York: Penguin, 1991
Sieghart, P., AIDS & Human Rights -- A U.K. Perspective, London: British Medical Association Foundation for AIDS, 1989
United Nations Commission on Human Rights, Protection of Human Rights in the Context of HIV and AIDS, UN Document E/CN.4/1994/L.60 (March 1, 1994)
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.
The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.