Rooting Out AIDS-Related Stigma and Discrimination

by Yvette Collymore

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(October 2002) A debate over how best to weed out AIDS-related stigma and resulting discrimination is growing within international health circles, as experts try to address these stubborn obstacles to HIV/AIDS prevention and treatment. While there is increased consensus that HIV/AIDS programs must tackle these issues directly, researchers have yet to find an effective means of tracking changes in attitudes toward infected people.

"You have to recognize which kinds of stigma and discrimination are harmful for disease control," explains Dr. James W. Curran, an AIDS epidemiologist and professor at Emory University in Atlanta. "It depends on the country; it depends on the laws, the values, the particular subculture. The issues have to be identified and then they have to be combated. It's like weeds in a garden; you have to keep pulling."

Around the world, reactions to the AIDS epidemic have ranged from silence and denial to hostility and outright violence. Fear of being branded or socially outcast may prevent a person from being tested for the virus or from seeking treatment if he or she has HIV. People who have or are thought to have the virus may be shunned, abused, denied jobs and housing, or refused care and treatment at health care facilities. These reactions hamper prevention and treatment efforts and deepen the epidemic's impact.

Stigma and discrimination are separate, but closely linked, issues that remain among the most poorly understood aspects of the epidemic, according to a recent report by the Population Council's Horizons Program. The study notes that the lack of understanding is related, in part, to the complexities surrounding the two issues, but that the gaps in knowledge largely result from weaknesses in the tools and methods used to monitor the problems.

Finding straightforward definitions of social stigma, the more complex of the two concepts, is one of the many problems for researchers, for while some harmful attitudes are clearly identifiable, many are veiled.

Stigma often relates to people's attitudes toward others, drawing from the classical definition, which refers to a bodily mark that signifies a larger stain on a person. According to sociologist Erving Goffman, in his 1963 book, Stigma: Notes on the Management of Spoiled Identity,¹ the term commonly refers to "undesirable attributes" that are "incongruous with our stereotype of what a given type of individual should be."

Discrimination focuses on the actions, treatment, and policies that arise from such attitudes and which may violate the human rights of people living with HIV/AIDS and those close to them. The term refers to any form of distinction, restriction, or exclusion a person may encounter because of an inherent personal characteristic.²

Just how to assess the size and depth of the problem of AIDS-related stigma and resulting discrimination is a major question. The Joint United Nations Programme on HIV/AIDS (UNAIDS) describes stigma as the "most intangible of phenomena."³ And while many prevention and care programs aim to reduce damaging attitudes, virtually no one has a reliable way of measuring the harmful effects of stigma and discrimination, according to the UNAIDS' National AIDS Programmes: A Guide to Monitoring and Evaluation.

Much of the research so far has attempted to define the problem.

Unraveling the Concept of Stigma

Stigma related to HIV/AIDS feeds off well-established relations of power within society — those associated with race and ethnicity, economic status, sexual orientation, and women's low social status.

"Ultimately, stigma creates, and is reinforced by social inequality," according to UNAIDS. "It has its origins deep within the structure of society as a whole and in the norms and values that govern everyday life. It causes some groups to be devalued and ashamed and others to feel that they are superior."⁴

Traditional attitudes toward women around the world help feed stigma. Stereotypes in which women are seen as subordinate to men socially, psychologically, and economically, help shape the way society perceives HIV-infected women and girls, who often are the main caretakers in the family even when they themselves are ill. In settings where HIV is associated with sex between women and men, women with HIV carry the greater burden of stigma, attracting more contempt and rejection than men do. In many societies, there are reports of women facing abuse and abandonment by husbands who were the source of infection.

Some biological differences between women and men create additional social and cultural responsibilities and consequences for women with HIV. Key among them is the ability of the woman to transmit the virus to her baby during pregnancy, labor and delivery, or as a result of breastfeeding.

A study conducted in Zambia, India, Ukraine, and Burkina Faso found that pregnant women with HIV suffer multiple layers of stigma. They may be devalued because they are women, because they have HIV, and because they are pregnant and have HIV.⁵ Furthermore, in settings where breastfeeding is the norm, the decision by an infected mother not to breastfeed could draw attention to her HIV status, placing her at risk of abuse and ostracism.⁶ The situation for these women is even worse if they are — or are thought to be — sex workers or injecting drug users.

To some extent, the term "mother-to-child transmission" invites negative reactions, since it implies that the woman bears the blame for infecting the child, notes the study of areas in Zambia, India, Ukraine, and Burkina Faso. Conducted by the Panos Institute in collaboration with the United Nations Children's Fund (UNICEF) in mid-2001, the study found that women bore the burden of blame at all the research sites.⁷

"In India, motherhood is perceived as the ultimate validation of womanhood," the study notes. "With the increasing risk of married, monogamous women contracting HIV, it was reported to be common for the woman to be stigmatized and blamed for passing on the infection to her unborn child. Blame is accentuated if a male baby becomes infected, due to the high value already awarded to male children."⁸

In addition to reinforcing social inequities, HIV-related stigma also bolsters age-old fears and prejudices directed at those with life-threatening conditions and those who flout society's rules. The dread of contracting a fatal illness is thus intertwined with the shame that surrounds a condition whose modes of transmission include sexual contact and drug use-two factors subject to judgments about social norms, including appropriate sexual behavior.

For all these reasons, groups long deemed to be at high risk of HIV infection — including sex workers, men who have sex with men, and injecting drug users — may be disparaged at many levels because of their infection, their work, and their lifestyles. In fact, infected people invariably are assumed to belong to one of these groups, while those who are already marginalized may be thought to have HIV/AIDS even if they are not infected.⁹

For researchers, these many layers are difficult to unravel.

"Sex workers, injecting drug users, and men who have sex with men are already stigmatized for many reasons, and they are also closely associated with HIV in many contexts," said Dr. Julie Pulerwitz, a behavioral scientist with the Horizons Program and the Program for Appropriate Technology in Health (PATH). "These are examples of what we call compounded stigma: a cycle of mutually reinforcing stigmas."

The language that surrounds the epidemic also helps reinforce these stereotypes and attitudes. A study by the International Center for Research on Women (ICRW) of community sites in Ethiopia, Tanzania, and Zambia points to the use of derogatory terms to describe those with the virus. The study notes that a person with HIV or AIDS in Tanzania may be referred to as maiti inayotembea, meaning "walking corpse" or marehemu mtarajiwa, which means "expected to die." The research notes that people hardly ever discussed or named HIV/AIDS openly and often spoke of "that disease we learned about."¹⁰

The study found that the choice of terms for HIV in Tanzania and Zambia depended on the epidemic's history in the community and the people speaking, whether a young person, a man, or a woman. The terms also were influenced by popular culture and by HIV education messages.

Persistent myths and ignorance about the ways in which HIV is transmitted also trigger damaging attitudes.

Among students above the age of 18 at a New Delhi high school, those with the most negative views of the epidemic were the least likely to have been exposed to HIV information, a survey shows.¹¹

"They have been conditioned into thinking that only 'bad' people contract HIV," according to the study conducted by Stanford University in California and the Maulana Azad Medical School in New Delhi. The study notes that more than half the teenagers surveyed wanted access to HIV information, "but since they have been told that such education is immoral due to its association with the Indian taboo of sex, they will not ask for it overtly."¹²

Analyzing the Effects of Stigmatizing Attitudes

The harmful attitudes surrounding HIV/AIDS have many consequences, not only for individuals and their families, but also for communities and societies. Stigma-induced actions take many forms:

• Fear of being ostracized by their community may prevent women and men from being tested for HIV, and those who test positive may conceal their illness. Individuals living with HIV or AIDS may internalize the negative responses of others and may feel ashamed, guilty, and depressed and isolate themselves. These kinds of reactions are a major impediment to HIV prevention efforts and discourage those who are ill from taking advantage of health and other services. Support and care from family, friends, and the community are key.
• Families may blame, neglect, or drive away sick relatives in an effort to hide their links to the epidemic and avoid negative reactions. In a Zambian study, researchers learned from a focus group discussion that "during burial, you will find the mouth and the eyes are open, an indication that the person died when there was no one at home to at least close his eyes and mouth."¹³
• Communities, another major source of support, have cast out people with the virus whose infection may be seen as a consequence of sinful, reckless, or decadent acts.
• In the wider society, such institutions as schools, places of work, churches, hospitals, and clinics may help perpetuate an atmosphere in which stigma and discrimination thrive. People who are ill may be denied jobs, schooling, treatment, care, and the right to confidentiality in health care settings.
  In Ukraine, women with HIV were not allowed to use the same gynecological couch as those believed to be free of the virus, a study found. Nurses refused to swaddle babies born to infected mothers for fear of contracting the virus.¹⁴
• Laws and policies may also reinforce negative attitudes and cause individuals and families to be shunned through, for example, compulsory HIV screening and testing, travel restrictions, and even deportations. Laws that seek to protect people's rights may be weak or not properly enforced.

Monitoring Stigma, Discrimination

Local communities have been exploring ways of combating stigma by circulating information, providing counseling, promoting greater involvement of people with HIV in programs, and teaching coping skills.¹⁵ Strategies have also included monitoring human rights violations and enabling people to challenge discrimination. However, a review conducted by the Population Council in 2001 found that researchers still faced major questions of how best to counter the deeply embedded social attitudes and harmful actions surrounding the epidemic.

The reviewers found that relatively few approaches to countering AIDS stigma have been rigorously evaluated, documented, and published around the world, and that approaches have not always been tailored to specific cultural settings or populations.¹⁶ Researchers also note that projects could increase their impact by adopting a comprehensive, community-wide approach that recognized links to other social settings, as opposed to looking at a single context of stigma or discrimination.

One project, based in the Negros Occidental province of the Philippines is cited as an example of a comprehensive approach that addresses negative attitudes and actions that may occur in a variety of contexts.¹⁷ In an area where the epidemic is at an early stage and health workers respond with fear to patients with the virus, the Hope Foundation project offers technical support, training, and information in local dialects. Working at different levels of society, the project targets health workers at municipal and private hospitals, students and new health professionals in the field, as well as religious agencies, academic institutions, counseling projects, and labor groups.

In attempting to measure AIDS-related stigma, many surveys ask hypothetical questions. According to Pulerwitz at Horizons/PATH, the most common way to measure this phenomenon is by testing people's fear of contagion.

"Some of the more widely used international surveys ask questions that mainly tap into fears of contagion, such as, 'Are you willing to share a glass with someone who has HIV?' or 'Do you think that someone with HIV should be allowed to attend school?' However, while this is important, it's only one component of the very complex issue of HIV/AIDS-related stigma," she points out. "Recognizing this problem, the Horizons Program, with its stigma studies, are testing new questions to encompass the multiple dimensions of stigma."

UNAIDS notes that a major problem is the absence of a direct relationship between attitudes and behavior in the context of HIV/AIDS, with major discrepancies between what people say and what they may actually do. Researchers have found that people who express negative feelings about those with HIV may care for an infected relative at home, while others who may deny negative feelings toward people with the virus may openly discriminate against them in such settings as health care centers. Without a more effective may to measure attitudes, hypothetical questions may remain a key part of the process.¹⁸

Major challenges also surround efforts to measure discrimination. For one thing, not all acts of discrimination are obvious. Whereas an employer may fire someone because that person or someone close to them has the virus, the discrimination may take a more subtle form, as in a church or community leader withholding care and support for an ailing individual.

UNAIDS notes that surveys to measure discrimination tend to focus on questions that yield answers of "yes" or "no" — questions that may attempt to ascertain, for example, whether protective legislation exists or is enforced. While such information may help program planners address important gaps, such information will have little effect in attempts to regularly monitor national AIDS programs, says UNAIDS.¹⁹

The impetus for wider research is coming from a number of sources. The UN General Assembly has urged countries to enact and enforce laws and other measures to combat stigma and eliminate discrimination against people living with HIV/AIDS, those close to them, and other vulnerable groups. To this end, UNAIDS has mounted a 2002-2003 campaign that is meant to support national, regional, and international strategies.

In the United States, the National Institute of Mental Health has urged empirical studies that provide data for use by health workers, government officials, and others involved in HIV/AIDS programs. A 2001 international conference on stigma and global health organized by the National Institutes of Health (NIH) also helped increase the focus on the issue. NIH is now pressing for interdisciplinary research on the role of stigma in global health and ways of preventing and mitigating its negative effects.

Yvette Collymore is senior editor at PRB.

References

1. E. Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon & Schuster, 1963).
2. Joint United Nations Programme on HIV/AIDS (UNAIDS), Protocol for the Identification of Discrimination Against People Living With HIV (Geneva: UNAIDS, 2000).
3. UNAIDS, National AIDS Programmes: A Guide to Monitoring and Evaluation (Geneva: UNAIDS, June 2000).
4. UNAIDS and the World Health Organization (WHO), Fighting HIV-Related Intolerance: Exposing the Links between Racism, Stigma and Discrimination (Geneva: UNAIDS/WHO).
5. Panos, Stigma, HIV/AIDS and Prevention of Mother-to-Child Transmission (London: Panos, December 2001).
6. International Center for Research on Women (ICRW), Community Involvement & the Prevention of Mother-to-Child Transmission of HIV/AIDS (Washington, DC: ICRW, 2002).
7. Panos, Stigma, HIV/AIDS and Prevention of Mother-to-Child Transmission.
8. Panos, Stigma, HIV/AIDS and Prevention of Mother-to-Child Transmission
9. Richard Parker et al., HIV/AIDS-Related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action (Washington: Horizons Program, 2002).
10. International Center for Research on Women (ICRW), Understanding HIV-Related Stigma and Resulting Discrimination in Sub-Saharan Africa (Washington, DC: ICRW, June 2002).
11. Suneet Pramanik and Cheryl Koopman, "Examination of the Effects of HIV-Associated Stigma upon HIV Awareness and Education in Teens in India," abstract presented at the XIV International AIDS Conference in Barcelona (July 2002).
12. Pramanik and Koopman, "Examination of the Effects of HIV-Associated Stigma upon HIV Awareness and Education in Teens in India."
13. Panos, Stigma, HIV/AIDS and Prevention of Mother-to-Child Transmission.
14. Panos, Stigma, HIV/AIDS and Prevention of Mother-to-Child Transmission.
15. UNAIDS, A Conceptual Framework and Basis for Action: HIV/AIDS Stigma and Discrimination (Geneva: UNAIDS, 2002).
16. Richard Parker et al., HIV/AIDS-Related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action.
17. Joanna Busza, Literature Review: Challenging HIV-Related Stigma and Discrimination in Southeast Asia: Past Successes and Future Priorities (Washington, DC: Horizons Program, 1999).
18. UNAIDS, Protocol for the Identification of Discrimination Against People Living With HIV.
19. UNAIDS, Protocol for the Identification of Discrimination Against People Living With HIV.