(December 2002) Stigma and discrimination remain a major fact of life for the estimated 29.4 million people with HIV in sub-Saharan Africa and for the more than 11 million children who have lost one or both parents to AIDS. Whether it is a worker afraid of being fired from a job or a woman terrified of losing her children and her home, well-founded fears exist for many with the virus. But despite agreement that stigma and discrimination must be overcome to turn the tide on the epidemic, communities and governments in Africa — as elsewhere — continue to struggle to protect people’s rights and dignity.
“The national AIDS plans of several African countries explicitly recognize the public health imperative underlying the promotion of human rights — an achievement in itself. Yet few governments actively promote or assist a rights agenda in relation to AIDS,” Mark Heywood of the AIDS Law Project at the University of Witwatersrand in Johannesburg has written in SAfAIDS News.
At the same time, the Joint United Nations Programme on HIV/AIDS (UNAIDS) notes that the real battle in Africa against AIDS takes place beyond the scope of governmental authority — in families and villages, where discrimination tends to be intensely personal. Reactions to the virus may be in the form of school children shunning others on the playground or in-laws spurning the widow of a son who died from an AIDS-related illness. A June 2001 meeting in Tanzania that sought to set a research agenda for stigma and HIV/AIDS in Africa described stigma within the family as being among the most subtle and debilitating forms of this problem and the hardest to address.
In the international arena, much has been done to frame HIV/AIDS as a major challenge to the human rights of those affected. Governments from around the world, including Africa, adopted a declaration at a special session of the UN General Assembly in June 2001 in New York that by 2003 they should enact, strengthen, or enforce measures to eliminate all forms of discrimination against infected people and other vulnerable groups. The right to nondiscrimination is also enshrined in a number of international instruments, including the Universal Declaration on Human Rights, the International Covenant on Economic, Social, and Cultural Rights, and the African Charter.
Nevertheless, negative reactions to people with HIV/AIDS persist, reducing the quality of life of millions. The stigma associated with HIV and AIDS causes some people to deny the risks of infection and avoid being tested, while others hide their infection, shun friends and family, and avoid seeking support and treatment. If their HIV status is revealed, those with the virus may be ostracized, refused treatment and care, or even face abuse and violence. The 1998 stoning to death of South African community volunteer Gugu Dlamini after she publicly disclosed her HIV status on World AIDS Day is one of the starkest examples of the negative attitudes related to AIDS. Such attitudes increase the epidemic’s impact on individuals, families, communities, and nations.
In South Africa, where one in nine people live with HIV, the AIDS Law Project reports that the main source of complaints over the years has involved employer discrimination and HIV testing that is performed without regard to confidentiality, people’s informed consent, or pre- and posttest counseling.
“Medical and employment malpractices are a main source of complaints and have remained fairly constant over the years,” notes the AIDS Law Project, a nongovernmental organization (NGO) that offers free legal advice and works to prevent discrimination against people with the virus. “It is interesting to note that a great number of cases involved the combination of irregular medical testing with that of employer discrimination.”
Employer discrimination may take many forms. The Southern African Development Community (SADC) has pointed out that some companies dismiss workers with the virus or hire only those believed to have a low risk of infection. In addition, many medical insurance schemes offered by companies have no HIV-related medical benefits, and some industries have even proposed overhauling their medical benefits schemes to get around anticipated HIV/AIDS expenditures. The Human Rights Monitor, produced by the Zimbabwe NGO Human Rights Forum, notes that some infected people have been denied promotion because it is felt they may die at any time.
Vulnerability to HIV and the related stigma and discrimination are linked to existing inequities and stereotypes, including racism, poverty, intolerance, and inequality between women and men. As such, the worst affected are already the most disadvantaged, whether on racial, gender, or economic grounds. In sexual relations between women and men, a woman’s safety may be compromised by a man’s opposition to condoms, the potential for abuse and violence in the relationship, and dependence on a male partner for economic or social support. At the same time, the woman may bear the blame for spreading the disease, regardless of the circumstances.
In sub-Saharan Africa, issues of gender as well as poverty, a lack of economic opportunities, limited access to education, information, and services, and traditional norms and practices significantly increase a woman’s vulnerability to HIV and lie at the root of her experience in trying to cope with the related stigma and discrimination.
Women make up the majority of adults (15-49 years old) in this region who live with HIV/AIDS — 17 million out of a total of 29.4 million, or 58 percent of all adults with HIV in sub-Saharan Africa, according to UNAIDS estimates for 2002. UNAIDS also reports that in some sub-Saharan countries, prevalence among teenage girls is five times higher than for teenage boys.
Studies show that ignorance related to HIV and AIDS is a major factor in the vulnerability of the region’s young women. Research by the United Nations Children’s Fund (UNICEF) found that among girls 15 to 19 years old, 70 percent in Somalia and more than 40 percent in Guinea Bissau and Sierra Leone had never heard of AIDS. However, a study in Zimbabwe by the United Nations Development Fund for Women (UNIFEM) indicated that even when women know about HIV/AIDS, “their economic dependence on men left them feeling ‘helpless’ to negotiate safe sex.”
The Swaziland Example
In Swaziland, a landlocked country of 1.1 million people, national government actions reflect a traditional society grappling to address an epidemic that had claimed one or both parents of an estimated 35,000 children under age 15 by the end of 2001.
In early 2000, the country’s parliament considered two motions that, though they were ultimately defeated, highlighted the prejudices and misconceptions facing people with HIV. One motion sought to create camps to quarantine those with the virus; another proposed sterilizing all infected residents. While these motions failed, the parliament did pass another to have miniskirts banned in schools, a move that appeared to distract from any real debate on prevention and education programs.
In 2001 the king announced a controversial five-year sex ban for women of marriageable age. Young women are expected to wear traditional tassels to show their virginity and are forbidden from wearing pants. This ruling is being promoted as an anti-AIDS move.
Urging greater openness and discussion of the rights of the Swazi people affected by the epidemic, a 2000 study sponsored by the United Nations Development Programme (UNDP) directly addressed these kinds of reactions.
“On a one-to-one basis, particularly at the domestic level, the reality is that people living with HIV/AIDS are stigmatized, discriminated against, and rejected,” according to the report Human Rights, Ethical Issues, and HIV/AIDS in Swaziland. Moreover, the study states, stigmatization and discrimination have contributed to the silence and denial about the HIV/AIDS epidemic in Swaziland “and has resulted in the epidemic being driven underground, contributing to the unprecedented spread of infection.”
The study shows that workers have been fired when their HIV status was discovered. It also noted, however, that many large companies are trying to address the epidemic “ethically” and to support sick employees.
Workplace policies and practices are guided by a 1998 Swaziland policy document on HIV/AIDS and the prevention and control of sexually transmitted infections (STIs). International guidelines, such as the International Labour Organization Code of Practice on HIV/AIDS, also play a role. The Swaziland policy document calls on the government to promote information and education programs to dispel myths and fears about HIV/AIDS and to promote the rights of people. However, no specific anti-discrimination laws have been instituted to protect those with the virus.
Likened to a “Switzerland” of Africa for its low regional and international profile, this kingdom of rolling hills and forests is tucked between Mozambique and South Africa and has a gross national per capita income of US$1,300 (compared with US$2,900 for South Africa), by World Bank estimates. A British protectorate until 1968 when it became independent, Swaziland’s largely homogeneous population comprises mainly Swazi people who speak Siswati and English.
Swaziland is a modern African country whose people have held steadfastly onto its traditions. The capital, Mbabane, has two gleaming, well-trafficked malls, while local merchants continue to sell their wares along the roadsides. The famous Umhlanga or “Reed Dance” festival is now being used by NGOs trying to promote messages of safe sex, HIV/AIDS, and gender rights.
Swazi Initiatives to Counter Stigma and Discrimination
With estimates of those infected with HIV at 170,000 or 33.4 percent of people 15 to 49 years old, Swaziland is among the most AIDS-affected countries in the world. In 1999, King Mswati III declared HIV/AIDS a national disaster. Later, the government established a Cabinet Committee on HIV/AIDS as well as an HIV/AIDS Crisis Management and Technical Committee, which was disbanded after it issued its national strategic plan at the end of 2001. The king formed a National Emergency Response Committee on HIV/AIDS (NERCHA) in 2002, which is administered by the prime minister’s office. NERCHA oversees implementation of the Swaziland National Strategic Plan for HIV/AIDS 2000-2005 and administers US$1.3 million in AIDS funds.
The strategic plan outlines a framework to guide a broad-based, national response that focuses on three areas: risk reduction (for infection); response management (for care, treatment, and support of those affected); and impact mitigation (to address the far-reaching effects of the epidemic on Swazi society). Under response management, the plan is to address stigma and discrimination to create a better environment for people with the virus. The strategies for accomplishing this include passing nondiscrimination legislation; developing policies to protect the rights of people with HIV/AIDS; educating communities to support those with the virus; ensuring that those who are affected receive counseling; and training community volunteers to provide care, support, and counseling.
There have been other initiatives. In early 2000, local leaders launched a national chapter of the Alliance of Mayors and Municipal Leaders on HIV/AIDS in Africa, which aims to work with the government, NGOs, the private sector, and local communities to limit the spread of HIV/AIDS and reduce the social and economic impact of the epidemic in towns and cities. In their declaration on HIV/AIDS, these local leaders address discrimination by committing to “raising awareness and changing attitudes on stigmatization, denial, rape, incest, multiple partners, and other unsafe practices.”
As part of a program to incorporate the HIV/AIDS work plans of all 11 municipalities, local leaders are being trained to address issues of discrimination and stigma and to be knowledgeable advocates on HIV/AIDS in their communities. The entire program is supported by a US$1.06 million grant from the African Capacity-Building Foundation, established and funded by the African Development Bank, United Nations Development Programme (UNDP), African governments, and bilateral donors.
Small initiatives are also coming from people with the virus. In 1993, people with HIV and AIDS formed the Swaziland AIDS Support Organization (SASO), whose goal is to share information and encourage support for people affected by the epidemic. With about 60 members and offices in three towns, SASO focuses its efforts on behavior change, support, information sharing, advocacy, and uprooting the stigma and discrimination faced by people living with HIV/AIDS and their families.
Government Focuses on Swazi Women and HIV/AIDS
The Swaziland government readily acknowledges that women have an increased vulnerability to infection. According to its policy document on HIV/AIDS, the reasons for this include:
- Limited knowledge and access to information about HIV/AIDS and sexually transmitted infections (STIs);
- Women’s economic and social dependence on men; and
- The asymptomatic nature of STIs in women, a factor known to hinder treatment and facilitate the spread of HIV.
The government recommends increased access to information and counseling and training in self-esteem, assertiveness, and decisionmaking to improve women’s negotiating position in sexual relationships and urges a review of religious and cultural traditions that can hurt women.
Gender studies by the UNDP have focused on some of the cultural practices that have added to women’s vulnerability to infection. For example, Swaziland is a polygamist society that allows men to have multiple wives and sexual partners. There are also arranged marriages and widow’s inheritance, whereby women whose husbands have died move in with their brothers-in-law who then become their surrogate husbands.
The research also found that the culture fosters submissiveness by women and male dominance. Swaziland’s women are considered legal minors: They cannot own property, enter into contracts, or receive bank loans without a male relative.
Setting the Agenda, Addressing Silence and Denial
The dynamics of stigmatization and discrimination in African societies are complex and not easy to overcome. Ignorance and misinformation intertwine with gender inequities, poverty, weak health care systems, and local customs. There is general agreement that African leaders in all areas — local, national, religious, and traditional — have a clear responsibility to encourage discussion, publicly acknowledge the ways in which they themselves are affected, and take other steps to address the silence and denial.
Although stigma and discrimination may never be eliminated, African government officials and researchers agree that interventions should aim to build responsibility and accountability. Experts attending the 2001 meeting held in Tanzania to set a research agenda on stigma and HIV/AIDS in Africa recommended action in four areas:
- The family: Responding with home-based care and other programs, bearing in mind that children face unique challenges and should be active partners rather than passive recipients in any intervention.
- Health care settings: Developing discharge and referral systems that are sensitive to people’s need for privacy; developing codes of ethics and professional conduct for health care services; and offering forms of redress when violations occur.
- The religious sector: Identifying language and doctrines that may be stigmatizing and promoting caring and nonjudgmental alternatives.
- The mass media: Developing media standards for journalists who report on HIV/AIDS; holding communicators accountable for reporting on the epidemic accurately, sensitively, and in a nonstigmatizing manner through the use of countrywide or region-specific monitoring mechanisms; and providing resources for sustained communication on HIV/AIDS that specifically addresses stigma.
The Blue Print for Action report published in July 2002 by a Global HIV Prevention Working Group, convened by the Gates and Kaiser Foundations, cites stigma as an obstacle to scaling up proven prevention strategies. In sub-Saharan Africa, openness and destigmatization will be crucial to efforts to curb the spread of this disease. At the same time, many agree that more research is needed to better understand the underlying causes of people’s negative responses.
Margo M. Kelly is a program development specialist and freelance writer based in Washington, D.C.
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