|Uganda: HIV and AIDS-Related Discrimination, Stigmatization and Denial (UNAIDS, 2001, 36 p.)|
Reported responses to discrimination, stigmatization, and denial in terms of HIV/AIDS were of three main types. First, there were responses of an individual nature. These included revealing one's HIV/AIDS status to family and community members. Importantly, disclosing one's status in this way was found in some cases to diminish the stigma associated with the condition. As reported in a counsellors' focus group in Mbarara,
"One lady who had AIDS had earlier been rejected by the relatives and the community. But after she went public and declared her serostatus, those who had deserted her now come for assistance and guidance on how to cope with AIDS." (This same woman subsequently became part of the AIDS Education drama group in TASO.)
Another described the following experience: "Declaring one's status gives you a sense of self-worth. It removes a spirit of isolation and self-condemnation and increases love and care from other people" (Person with AIDS, no details).
In these two cases we can see how acknowledging one's serostatus may lessen both the felt and enacted components of HIV/AIDS-related stigma. Many other similar examples were given by research respondents. For some women, an additional perceived benefit of sharing their serostatus was that it lessened the likelihood that men would approach them for unwanted sexual relationships.
Nevertheless, it was clear from interviews and focus group discussions that respondents from rural communities were less likely to reveal their seropositivity than those from urban ones. In rural areas, openness may be constrained by gossip, by inadequate HIV/AIDS prevention and care, and by the absence of adequate support systems for people with HIV/AIDS. More intensive educational work and other activities may be needed in rural communities.
Some respondents did not have the strength to be fully open about their condition. For them, a more secluded and often isolated life was seen as the only option. They avoided situations where DSD might occur. According to a male counsellor in Mbarara District, "Somehow psychologically, they still feel that they will not be accepted by members of the public. That they will be looked at as people whose behaviours have deviated from the others in society."
The power of counselling to support people in confronting HIV/AIDS-related DSD and in being more open about their serostatus was a recurrent theme throughout our study. In a focus group in Mbarara, one person told us, "Once you have been counselled, you don't mind about people's comments and reactions against you." However, other responses to DSD suggest that counselling needs to be consistent and ongoing if it is to have a tangible impact on the lives of people with HIV. One counsellor in Mbarara told us how his clients responded to HIV/AIDS-related DSD:
"Actually, most of them at the beginning feel like dying, feel like committing suicide, because, you know, being tossed around. Everybody doesn't want to handle you, everybody doesn't want to help. They have suicidal, I think, suicidal tendencies. They feel like, "I wish I could die!" "(Male counsellor, Mbarara District)
At the family and community levels, respondents reported that HIV/AIDS-related DSD had lessened as more families became affected, and as support was more forthcoming. In a focus group in Kampala, one man said, "Many people (families) have lost their dear ones. It is due to this reason that they come to help with the situation and not to stigmatize and discriminate against people with AIDS." In a similar group discussion in Mbarara, a man reported: "My family and relatives from the time I revealed my serostatus have been supportive, sympathetic, and caring. I was delighted that my family accepted me. They advised me to go to TASO for long life, care, and support. One of them organized a TASO counsellor for me." Although this sounds positive, it should be remembered that the responses women received were likely to be very different from those accorded to men.
Many health staff have been reported as taking active steps in their own institutions to challenge HIV/AIDS-related DSD. In Mbarara, some health workers were even planning to have money deducted from their salaries every month to demonstrate their support for people with HIV/AIDS. As the administrator of the local hospital explained, "Health workers in this area have a socio-medical committee specifically aimed at addressing the social aspects of persons living with AIDS. They are proposing to fund it by deducting some money from their monthly salaries."
A key informant in Kampala pointed out that "The attitude of health workers towards people with AIDS and HIV is positive [now] because almost everybody has been affected. Nearly everyone has lost a relative, a friend, or a neighbour." Equally, the fact that those who give care have not become HIV positive has encouraged others to become care-givers within the community. This suggests that, to challenge DSD, it is important not only to provide information but also to "model" best practice to some degree.
As mentioned earlier, efforts have been made at the governmental level to enact legislation to protect people with HIV/AIDS from discrimination and to promote a more compassionate and caring response. While an evaluation of the impact and effectiveness of this legislation was beyond the scope of this study, the existence of a clear legislative framework to promote the human and civil rights of people living with HIV/AIDS is a crucial component of any programme to lessen HIV/AIDS-related DSD.