Right from the start, HIV & AIDS was associated with certain risk groups. Most often these were marginalised sub-populations living, or rather surviving, outside mainstream norms. They included counterculture communities such as prostitutes, gays and lesbians, and the historically marginalised black minority community in the United States of America. The region worst affected by the HIV & AIDS pandemic, Africa south of the Sahara and particularly southern Africa, is seen as the epicentre of the epidemic and as such cannot be exempted from global marginalisation. The region also exhibits a fair amount of pre-HIV & AIDS stigma directed towards individuals not conforming to societal norms. This phenomenon has confounded efforts to address the pandemic.

In a seemingly heterosexual Africa, homosexuality is disdained. In most African countries homosexual ‘perpetrators' are subjected to sodomy laws, with penalties ranging from a possible prison term to even a death sentence. Homosexuality itself is a taboo; hence such liaisons are most often covert. It is common for individuals to be labelled based on their lifestyles, sexual orientation and HIV status respectively, and such individuals are subjected to human-rights violations and discrimination. This labelling and ostracism of ‘risk groups' create systematised stigmatisation and discrimination, and serves to differentiate between ‘them' and ‘us.'

This CAI discussion paper explores HIV-related stigma and discrimination, how it influences attitudes and behaviour, and how it impacts on the effectiveness of interventions intended to mitigate the devastations wrought by HIV & AIDS.

What is HIV-related stigma and discrimination?

Before the advent of HIV & AIDS, Goffman described stigma as an undesirable or discrediting attribute that an individual possesses and that reduces that individual's status in society.

In an area with high levels of HIV-related stigma, a positive HIV status, perceived or confirmed, devalues an individual to the extent that he or she receives a derogative label and is subjected to exclusions, ostracisms, ridicule and human rights violations. This is exemplified by the prejudice and negative behaviour directed towards individuals either suspected or known to be HIV positive.

What evokes HIV & AIDS-related stigma?

The sexual connotations of HIV & AIDS have caused it to be associated with sexual indiscretions, taboo behaviours, denial, secrecy, silence, irrational fear, discrimination, and the perception of infection as ‘just reward for wayward behaviour.' HIV is perceived as the just lot of individuals who behave contrary to social values: promiscuous people, prostitutes, and gays and lesbians. As such, confirmation of a sexually transmitted infection with the magnitude of HIV also evokes self-righteousness - blame and judgment, and assumption of the guilt of affected individuals. Consequently, infected individuals are held responsible for their illness and not considered worthy of the sympathy and support of family and community. The debilitating and disfiguring nature of HIV & AIDS also facilitates stigma and discrimination. Thus, an HIV-positive test brings with it uncertainties - especially the fear of the unknown for the individual in his or her shifting surroundings.

The effects of HIV-related stigma

Stigma and discrimination are detrimental to HIV & AIDS responses and interventions. Stigma can also be internalised. This leads an individual to accept his or her own ‘worthlessness,' which further reinforces denial and silence. Sometimes it engenders fear within the individual perceived to have been diagnosed with HIV. Some individuals, either suspected of having HIV & AIDS or having disclosed their positive status, have been ostracised by their immediate families and the community they live in, and consequently have been subjected to prejudice, ridicule, oppression and - even worse - gross human rights violations. Some have been grievously assaulted and killed. Such was the fate of Gugu Dlamini, a National Association of People Living with HIV & AIDS (NAPWA) activist who publicly disclosed her HIV-status and paid for it with her life when she was stoned to death in 1997.(2)

More recently, a South African national newspaper, The Times Live, featured an article titled ‘AIDS Rumour Kills 5; Mom driven to poison four young kids, then herself.'(3)The nation was shocked by reports of the terrible HIV-related and stigma-induced suicide and murder incident. Nokuzukla Mfiki, a 37-year-old mother of seven, killed herself and her four youngest children after a rumour circulated through her village that she was HIV positive. The rumour led to a campaign of ostracism and ridicule by members of her community in the rural areas of Lusikisiki in the Eastern Cape.(4)

HIV & AIDS intervention

HIV-related stigma and discrimination undermines preven¬tion efforts in communities by entrenching a reluctance to know one's serostatus. People living with HIV become afraid of disclosing their status, even to family members and sexual partners, for fear of retaliation. HIV & AIDS-related stigma generates persistently low perception of individual risk and a false sense of security, because only those considered to belong to risk groups are seen as vulnerable to the disease. It further prevents individuals in such ostracised groups and in communities themselves from seeking and utilising information about risk reduction. It also discourages responsible changes in sexual behaviour, since such changes might raise questions related to an individual's status.

HIV & AIDS-related stigma therefore undermines the ability of individuals and communities to protect themselves, which increases everyone's vulnerability to infection. For example, a woman in a sexual liaison may not be assertive in negotiating safer sex, and therefore she may end up pregnant and/or HIV positive. Later, she may not visit an antenatal clinic for fear of being tested for HIV, diagnosed positive and enrolled in a Prevention of Mother to Child Transmission Programme (PMTCT), through which her sexual partner and others might find out about her status. Consequently, if she is HIV positive, and takes no prevention precautions during pregnancy and birth, her child will very likely be born HIV infected and she herself will run the risk of HIV complications and early death. Stigma fuels the spread of HIV & AIDS because it erects barriers to prevention by hampering the effects of HIV & AIDS interventions and negatively impacting on access to HIV-related services such as testing, support and treatment.

Dealing with HIV & AIDS stigma

HIV & AIDS-related stigma must be recognised and addressed. Levels of stigma are synonymous with levels of ignorance about HIV & AIDS. Therefore it is imperative that HIV & AIDS-related knowledge, awareness and practices include interventions to mitigate stigma.

Strategies aimed at reducing stigma must incorporate policies and programmes based on a comprehensive human rights approach. Also, in order to counter stigma, implementers must employ intervention strategies premised on a multiplicity of stakeholders and participatory initiatives - from planning and implementing through the evaluation stages of policies and programmes. Both communicators (senders) and receivers must actively participate in interventions. A client-centred approach that is sensitive to societal norms and which balances power must be developed. This approach should be characterised by gender sensitivity, audience segmentation and audience-appropriate messages to influence attitude and behaviour change that will positively influence awareness and stigma levels. Most importantly, such interventions must feature evidence-based programming and must be sustainable and result-orientated. The same needs to be applied to peer-education training and peer education itself.

Greater involvement of people living with HIV & AIDS (GIPA) in de-stigmatising the condition is vital to bringing the message to the community and to acting upon it. The GIPA components of peer support and support groups, peer education, advocacy, public education, disclosure and positive living emphasise that HIV & AIDS, and not people living with the disease, is the problem. Knowledge stimulates a positive counter-response: "...those directly affected are integrally involved in decision-making processes, as well as in planning and implementing diverse strategies"(5) such as those outlined above.

Conclusion

In the end, HIV-related stigma reinforces ignorance and pre-existing stigma. It devalues individuals by socially marginalising them, and negatively impacts on HIV mitigations meant to counter the epidemic. Marginalised individuals are gagged and become voiceless, while HIV is left to spread unabated. This results in higher incidences of transmission, re-infection, late or no enrolment in treatment, opportunistic infections, drug resistance, drug-resistant tuberculosis, non-adherence to treatment, and high mortality rates - all of which could have been avoided with early diagnosis, treatment and adherence, complemented by the eradication of stigma.

Written by: Tumelo Itumeleng Nxumalo (1)

NOTES:

(1) Contact Tumelo Itumeleng Nxumalo through Consultancy Africa Intelligence's HIV & AIDS Unit (hiv.aids@consultancyafrica.com).
(2) Barrett-Grant et al., "HIV/AIDS and the law," AIDS Law (2001).
(3) Malungelo Booi, Lubabalo Ngcukana and Sashni Pather, ‘AIDS rumour kills 5: Mom driven to poison four young kids, then herself,' Times Live, 1 September 2009. Available at http://www.timeslive.co.za.
(4) Gouge, J. et al., "Stigma, identity and resistance among people living with HIV in South Africa," in Journal of Social Aspects of HIV, 6(3): 95.
(5) Morrison, K. "Breaking the cycle: Stigma, discrimination, internal stigma and HIV," in USAID (2006): 10-11.