FURTHER STIGMATIZATION, DISCRIMINATION AND DENIAL IN UGANDA

by Sophia Mukasa Monico

In 1997-1998, the AIDS Support Organisation (TASO) carried out a six-month study to establish the forms and determinants of stigmatization, discrimination and denial with reference to HIV/AIDS. The study took place in two districts of Uganda: urban Kampala and rural Mbarara, where TASO had been active for some time. While the findings are not a comprehensive representation of the situation in the country as a whole, there are some conclusions that can be drawn from this rapid assessment. These should help influence policy makers and highlight the need to carry out a more in-depth study into what is known as discrimination, stigmatization and denial (DSD). The findings of the study, which relied more on anecdotal representation rather than statistics, are summarized below.

TASO is one of the first community responses to the HIV/AIDS epidemic in Uganda. It was launched in 1986 as a self-interest driven initiative of 16 people infected or directly affected by HIV/AIDS. It has grown into one of the biggest internationally-recognized organizations in the provision of prevention and care to people living with the disease and their immediate families. It does this by forming partnerships with people living with HIV/AIDS (PWAs) and by empowering communities to handle their own HIV/AIDS issues.

The epidemic in Uganda is not new, and a Demographic Health Survey in 1997 determined that 97% of Ugandans knew about it. In spite of this high recognition, there remain significant pockets of DSD, making DSD an epidemic in its own right, contained within the HIV/AIDS epidemic.

There are many definitions of DSD but it is generally determined by the social dynamics of each community and influenced by, among other things, the stage of the epidemic; the level of knowledge about HIV/AIDS; accessibility to HIV/AIDS care and prevention services; cultural dynamics such as women’s vulnerability to sexual abuse and infringement of their rights; and the response to the epidemic. DSD is also influenced by levels of education, which in turn often influence income. In fact, people with less education often appear more supportive and accepting of PWAs than people belonging to highly educated, white-collar upper income groups. Finally, standards of care are a factor. Often, patients falling ill can no longer take care of themselves and must be cared for by children, in many cases of the opposite sex.

In both regions it was observed that the highest form of stigma was self-stigma rather than community stigma. Whereas community stigma was very high at the beginning of the epidemic, this gradually decreased, especially in circles affected directly by HIV/AIDS. In the late 1980s, some people living with the disease who were registered with TASO testified that parents and especially in-laws aware of their HIV status had evicted them from home. Often this was due to ignorance, with people fearing such things as witchcraft and infection.

By the time the study was carried out, those initially shunned had been accepted again and welcomed into their families. Families were more supportive, especially where additional resources were forthcoming. Community members at large were no longer awed or even overly surprised to hear or see someone with AIDS-related symptoms. Employers, though still lacking understanding, became more tolerant of sick employees. In some cases, strong positive reactions from the government and communities intervened to curtail discriminatory practices such as mandatory testing for employment. 


The Roots of Stigma

The stigma surrounding HIV/AIDS is brought about by a number of factors, particularly shame. Until recently, in most cases HIV/AIDS was predominantly associated with sex. Early prevention messages connected the disease to promiscuity. Even though promiscuity was most often not at the root of infection, people were ashamed of being associated with the disease, both individually and at the family level. Likewise AIDS has been associated with marginalized groups or groups looked down upon by society.

Fear is another factor influencing stigma and has often been fueled by ignorance. For many, witchcraft—the unknown malevolent superpower thought to cause the terrible unexplained disease that eats away at the person—lay behind the epidemic. HIV/AIDS in Uganda is called “slim” and for many, the very appearance of this symptom was enough to send people scurrying in shame.

Fear of losing employment has also been a factor. Due to the long and intermittent nature of the disease, companies have not been willing to support people living with HIV/AIDS. This is rapidly changing, as it has been widely demonstrated—especially by AIDS service organizations such as TASO—that a person can live a purposeful life for a significant period with HIV/AIDS.

Women in particular have faced the fear of being thrown out of their homes. In most cases their partners found out about the existence of the disease in the family through their children, when babies fell ill and died. Again, because of the misinformation circulating about AIDS, the woman was considered the culprit. 

Culturally, promiscuity is accepted on the part of the male partner but not for women. Therefore, a woman who shows signs of infection first or through an ill baby is believed to have brought HIV/AIDS into the family. This is tantamount to a social crime. 

People have also feared that by closely associating with a PWA they would also get infected. This fear is decreasing as communities in Uganda begin to realize that this is not true. Stigma, for one reason or another, was noted in the study as one of the major determinants of discrimination. 

It is strongly believed and empirically supported that Uganda’s enormous response to the HIV/AIDS epidemic, characterized by the country’s openness and strong community responses, has played a significant role in demystifying HIV/AIDS. This has consequently led to diminished denial and has contributed to the decrease in levels of stigmatization, and hence of shame and fear. This in turn has led to less discrimination.

Evidence of the above is embedded in the fact that people now openly seek HIV/AIDS services in specialized organizations such as TASO. Having said this, it has to be recognized that despite the unique comprehensive and quality services provided by AIDS service organizations, only the most economically desperate seek them out. This is because such organizations do not offer confidentiality in the strictest sense. Since these organizations provide services only to HIV-positive people, the simple act of walking through the door is tantamount to declaring one’s seropositive status to all and sundry. Therefore services of these organizations are only sought by those ready to compromise, or to share, their confidentiality. 

Those who can afford services elsewhere, in most cases through medical treatment, often do not take advantage of specialized HIV/AIDS facilities such as counseling, which are not often available through regular health facilities. If they can afford medical care, wealthier people prefer to keep their HIV status confidential for fear of shame, stigma or discrimination. Hence while the poor community of Uganda is facing a decrease in denial, stigma and discrimination and is seeking support concerning HIV/AIDS, the same cannot be said of the country’s elite. 

This brings imbalances in the response and reactions from both the service provider and recipient’s point of view. From a care point of view, failure to seek services by the country’s wealthier population has led to a high level of denial. This in turn has resulted in a poorer quality of life, especially psychologically. From a prevention point of view, Uganda’s wealthy have failed to access available information, or if they do their level of denial inhibits them from transforming their knowledge into action that might help them avoid contracting or transmitting HIV.

It has been suggested that one of the reasons DSD still exists despite human and financial investments in the response to AIDS is that this response has been driven largely by a highly committed community that has already made a significant difference. However, members of this community do not have enough power to influence issues that affect the root causes of the epidemic’s spread. Hence the impact has been superficial and individually-based rather than deep-seated and structurally based.

With timely and continued care and support—a combination of medical treatment, counseling and social support—most people can cope with the burden of the disease. They also manage to share their HIV status relatively easily, which helps them feel their burden is lightened. They have told us that they believe the sharing of confidentiality with those closest to them has improved their quality of life. Some have used this new self-confidence to support others in seeking appropriate care, as well as to sensitize their communities through their own testimonies. For example, they have formed drama groups to creatively raise care and prevention awareness in different communities. This has gone a long way to “lifting the veil” of silence from people who are infected and from the epidemic itself. It has also greatly contributed to restoring hope and improving the lives of persons and communities infected and affected by HIV/AIDS.

The AIDS epidemic in Uganda has changed over the years. A Ministry of Health surveillance report for 2000 reported that infection rates had fallen from an estimated 24% in 1990 to 8.5%-9% by the end of 2000. Antenatal clinics, the major surveillance points, reported a halving of the percentage of pregnant women found to be HIV-positive. The biggest age group reporting a significant decline in HIV infection were those aged between 15 and 24. Much of this is attributed to abstinence and faithfulness, but intensive social marketing of condoms and widespread distribution suggest that condoms are also frequently used.

It is believed that support services for people living with HIV have contributed to demystifying the epidemic, which has led to more people seeking services. This could not have been achieved if the government had not created an enabling environment for NGOs, who are the main providers of AIDS services.

The government’s openness to the epidemic broadened avenues for communities to address AIDS. The high community response—result-oriented, target-specific, very direct and reaching the grassroots, and in close collaboration with the government’s decentralized system—has turned HIV/AIDS into a common topic of conversation. Widespread and constructive advertisements by the government and NGOs contain highly practical guidelines and have helped transform a judgmental attitude into a more supportive one. Church groups also are making a significant contribution to fighting the epidemic. The enormity of AIDS cannot be handled by governments alone. The need for broad partnerships and the inclusion of even more partners is crucial.

Voices from Africa no. 10