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close this bookHIV and AIDS Related Stigmatization, Discrimination and Denial: forms, contexts and determinants - Research studies from Uganda and India (UNAIDS, 2000, 44 p.)
close this folder3. Review of relevant literature
close this folderForms of HIV/AIDS-related stigmatization, discrimination and denial
View the document(introduction...)
View the documentSocietal and community levels
View the documentIndividual experience

Individual experience

the impact of HIV/AIDS on women is particularly acute

People’s experience of HIV/AIDS-related stigmatization and discrimination is affected by commonly held beliefs, forms of societal stigmatization, and factors such as the extent to which individuals are able to access supportive networks of peers, family and kin. It may also be influenced by the stage of the epidemic and whether individuals feel they can be open about their serostatus, age, gender, sexuality and social status –among a host of other variables.

Overall, the negative depiction of people living with HIV/AIDS –reinforced by the language and metaphors used to talk and think about the disease –has reconfirmed fear, avoidance and the isolation of affected individuals and, in some cases, friends and families. In a highly stigmatizing environment, people may withdraw from society as a means of self-preservation. This isolation can extend to exclusion from social and sexual relationships and – in extreme circumstances – has led to premature death through suicide or euthanasia (Gilmore & Somerville, 1994; Hasan et al., 1994). More often, however, stigmatization causes a kind of social death in which individuals no longer feel part of civil society, and are no longer able to access the services and support they need (Daniel & Parker, 1990).

Who to tell, how and when, can be a potential source of fear and anxiety among many people living with HIV/AIDS and may prevent individuals from accessing treatment and care (Moynihan et al., 1995; Omangi, 1997). Even where laws have been enacted to protect the rights and confidentiality of people living with HIV/AIDS, few people are prepared to litigate in case their identity will become widely known. Those who are identified as belonging to marginalized and/or minority groups may also worry about the reactions of others, regardless of their serostatus. Fear of telling family members about their homosexuality has recently been cited by some Mexican men as equal to the fear of revealing their serostatus (Castro et al., 1998a; 1998b).

The impact of HIV/AIDS on women is particularly acute. In many developing countries, women are already economically, culturally and socially disadvantaged and lack equal access to treatment, financial support and education. Being outside the structures of power and decision-making, they may be denied the opportunity to participate equally within the community and may be subject to punitive laws, norms and practices exercising control over their bodies and sexual relations. In a number of societies, women are erroneously perceived as the main transmitters of sexually transmitted infections (STIs), which may be referred to as “women’s diseases” (de Bruyn, 1992). Together with traditional beliefs about sex, blood and other kinds of disease transmission, these perceptions provide a fertile basis for the further stigmatization of women within the context of HIV/AIDS (Ingstad, 1990; Peterson, 1990; Mushingeh, Chana & Mulikelela, 1991; Thant, 1993).

some women prefer to remain ignorant of their serostatus or keep it secret

There is clear evidence from recent UNAIDS-supported studies of household and community responses to HIV/AIDS in developing countries (Warwick et al., 1998; Aggleton & Warwick, 1999) that seropositive women are likely to treated very differently from men. Whereas men are likely to be “excused” for the behaviour that resulted in their infection, women are not. In India, for example, the husbands who infected them may abandon women living with HIV/AIDS. Rejection by wider family members has also been reported as common (Bharat & Aggleton, 1999). In some African countries, women whose husbands have died from AIDS-related infections have been blamed for the death. Remaining relatives may also evict the surviving spouse from her home (Henry, 1990). Fearful of such situations, some women may prefer to remain ignorant of their serostatus or may keep it a secret.

Perhaps in consequence, individual denial of risk and vulnerability is not an uncommon response to the epidemic. Such denial may manifest itself in self-distancing from the problem and, in extreme cases, can result in people misperceiving their vulnerability. Denial can also discourage voluntary testing among many people, particularly among members of especially vulnerable groups. This, in turn, may increase the potential risk of HIV transmission within the community (Lie & Biswalo, 1996). Such action undermines prevention, care and support.