AIDS: what drove three decades of acronyms and avatars?

With so much written about AIDS and HIV, and more recently anti-retrovirals (ARVs), it is sometimes difficult to remember a time before these acronyms, or to trace their transitions from signifiers of death to symbols of the struggles for hope and life.

The dominant narratives linked to the understanding of AIDS has shifted and changed over time. It moved from an idea that AIDS was the disease of “high-risk groups” to the idea that it was the result of “high-risk behaviours”. More recently, it has highlighted more complex discussions about problems such as sexual violence as a driver of infection.

The introduction of ARVs, the increased entrenchment of health and human rights, and the mass mobilisation of people affected by AIDS, has also altered the narrative.

What has formed over the years are changing “faces of AIDS”. Initially, it was white, gay, men, and more recently it is black, heterosexual, women. Rather than allowing for more nuanced understandings of the social, economic, political and historic factors contributing to the response to AIDS, these dominant narratives have often created or reinforced stereotypes of difference.

As with all health concerns, in the world before AIDS had been named and HIV identified, neither the research nor the reports were neutral or free of the global and local politics of the time.

How it all started

It was on June 5, 1981, that the Morbidity and Mortality Weekly Report first reported on the deaths of five young men from pneumocystis carinii pneumonia. They were described as “previously healthy” and defined as “active homosexuals”.

The weekly report was published by the Centre for Disease Control and Prevention- in the US. From this first report, the centre has remained an important source of information about health concerns for countries around the world. Its findings and ideas were significant in shaping research and understandings about AIDS in South Africa.

In addition to the weekly report, journals such as The Lancet were also reporting a rare form of cancer, Kaposi’s Sarcoma, affecting gay men.

As information was gathered about the new health concern, it was colloquially referred to as GRID – “Gay Related Immune Deficiency” or “Gay Related Immune Disease” as if there was something intrinsic about being gay that made people susceptible to it.

Reinforcing stereotypes

Research and information collected remained concentrated on white gay men but cases were also identified among women, children and heterosexual men. The term GRID was clearly pointless and by 1982 the new health concern was named AIDS – Acquired Immunodeficiency Syndrome.

None of the research at the time looked at the commonalities among people that might account for the illness, nor did it raise questions about masculinities and men’s sexual health and practices.

Instead, categories of people who were apparently at increased risk of having AIDS where identified as “high-risk groups” informally known as the Four-H Club. These were homosexuals, Haitians, haemophiliacs and heroin users. There was a later addition – hookers.

As a result, AIDS avatars such as “the homosexual”, “the prostitute”, and “the drug abuser” were created, drawing on long histories of social and medical prejudice and othering of certain groups of people. In the same way, the effects of scientific racism facilitated the construction of “the sick African” as another avatar.

The avatars shaped both research into AIDS and the public, politicians, and policymakers' perceptions of it.

These avatars created a hierarchy around exposure and reinforced divisions between apparently “normal safe majorities” and people with HIV or people dying of AIDS. It inappropriately divided people into those at risk (unsafe) and those not at risk (safe).

The avatars drew on existing stereotypes and reinforced them, reflecting existing prejudices or social attitudes relating to sexuality, sexual orientation, race, class and gender.

With attention focused initially on the avatars, the most obvious point – that HIV could be transmitted between people in the absence of safer sex practices, equity, or bodily integrity – was lost.

AIDS activists protest outside the US consulate in Cape Town.Mike Hutchings/Reuters

The strength of these avatars, insufficient effort at exposing how and why they were constructed, and a lack of critical reflection about what they revealed about society and research, were to have a deadly effect in South Africa.

The long, unresolved histories of using stereotypical avatars allowed those histories to be deployed in defence of AIDS denialism and in the controversy that followed. This delayed the national roll-out of ARVs.

While South Africa currently has the largest ARV programme in the world, the delayed national roll-out, which started in 2006, significantly slowed the country’s progress. South Africa currently has one of the highest HIV-positive ratios in the world – more than six million people live with HIV.

Continuing to change the faces of AIDS

For all the positive changes that need to be acknowledged, the spectre of AIDS avatars still requires attention.

The AIDS narrative has been significantly altered. But the world has been unable to completely shake the AIDS avatars. It manifests through stigma and discrimination and creates a further challenge in the struggle of people living with and addressing HIV to be seen, heard and allowed to live.

Observing the shifts in which groups of people become the face of AIDS is interesting. But if it is only observed and does not facilitate a more critically questioning exploration of why, how, and for what reasons this has happened, it is essentially meaningless.

We need to be able to identify which structures of power and privilege help create and maintain the avatars and determine why some of the most obviously oppressive structures – like patriarchy – have not been sufficiently undermined.

Until this is achieved, the politics of AIDS and avatars will continue to ensure the maintenance of social injustices for the next three decades.

Carla Tsampiras has received funding from the National Research Foundation of South Africa.