‘Invisible’ Aids crisis far from over

Members of the Treatment Action Campaign protest outside the Department of Health and Social Development File picture: Ihsaan Haffejee

Members of the Treatment Action Campaign protest outside the Department of Health and Social Development File picture: Ihsaan Haffejee

Published Nov 4, 2014

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There is widespread complacency, ignorance and denial about an epidemic that continues to devastate our country, says Steven Robins.

Cape Town - In her recently published book, Impossible Mourning: HIV and Visuality After Apartheid, Stellenbosch University academic Kylie Thomas analyses the role of art and photography in critically engaging with the pandemic.

Recalling the Aids denialism of the Mbeki administration, she writes about the ways in which the excess of words, images and debates on World Aids Day is accompanied these days by “the invisibility of the lives and the struggles of the majority of people living with HIV/Aids on all the other days of the year”. Just as the daily suffering of the black majority was rendered invisible by mainstream media and public institutions during apartheid, so too have the majority of people living with HIV become “invisible citizens”.

Thomas also reminds us that, as a nation, we have not yet begun the process of mourning the loss of lives and the suffering that so many South Africans have endured as a result of the pandemic. Like the denial of the persisting legacies of apartheid in the present, we embrace Aids myths that tell us that getting drugs on to clinic shelves means we have conquered the disease. Yet, as Thomas notes, the devastation of both apartheid and Aids continue to live with us. She observes that this devastation is “visible through our cities, our hospitals, our bodies, our child-headed households, our affluence, our rapists, our invisible provinces populated by the starving and the sick, our epidemic and through all that divides us still”. If we have not yet begun to mourn the loss and suffering apartheid unleashed upon our society, when will we start to mourn the devastation of Aids, a devastation that is far from over?

The Treatment Action Campaign (TAC) recently released a document with the heading “Aids is not over so neither are we”. Despite the fact that Aids is barely reported on these days in the media, and many donors no longer fund Aids activist organisations such as the TAC, there are clear signs that the crisis is not over. As we approach World Aids Day on December 1, we will no doubt once again be exposed to political speeches and media coverage of the pandemic. But what do these ritualised expressions of public concern really mean if, for the rest of the year, there is widespread complacency, ignorance and denial about an epidemic that continues to devastate our country with an estimated 1 000 new HIV infections each day and 1 000 deaths daily.

In a statement during the 20th International Aids conference in Melbourne earlier this year, veteran TAC activist Mark Heywood launched a blistering attack on journalists, academics, donors and philanthropists who are now in denial about the Aids crisis and have instead turned their attention to other more “sexy” concerns. As Heywood baldly states, not only has Aids become less visible, but new forms of Aids denialism are emerging in South Africa which ignore that “our health systems are in cardiac arrest and that medicine stock-outs are epidemic”. This denial also involves government refusal to provide condoms to schools and its failure to provide adequate TB control and treatment in prisons.

But South Africa is of course not alone here, and global complacency about poverty and inequality has contributed towards making Aids seem as if it is “just another disease of the poor”. Heywood’s angry denunciations were uttered in the context of the TAC having secured only one-third of its 2015 budget (“Cash-strapped TAC on verge of closing”, Cape Times, September 30). Although the TAC played a central role in ensuring that 2.5 million South Africans are now on HIV treatment, donors are no longer interested in Aids activism. It would also seem that many donors, NGOs, researchers and journalists no longer view Aids as a life-and-death matter, and have moved on to other health emergencies such as Ebola in West Africa

In these times of donor and media fatigue about Aids, it is worthwhile remembering the TAC’s central role in advocating for prevention of mother-to-child transmission (MTCT) programmes; challenging Aids denialism and ignorance; mobilising communities to test and initiate treatment; and monitoring the roll-out of treatment, health budgets and drug stock-outs. The organisation also ushered in new understandings of the right to health care and managed to challenge the widespread stigma of Aids. Through TAC and Doctors Without Borders-run treatment literacy and support groups, people living with Aids became lay experts on the science of HIV and treatment.

But the TAC’s campaigns went beyond simply getting drugs into bodies. For instance, it was able to give people living with Aids a strong sense of belonging to a community of activists who supported each other under extreme conditions. At public meetings and TAC annual congresses that I attended, hundreds of activists wore HIV-positive T-shirts and would sing and dance until one of them grabbed a microphone to give testimony. I can recall activist testimonies relating how they discovered their HIV-positive status and learnt about their life-threateningly low CD4 counts and high viral loads. They would narrate how, through treatment, these biological indicators were miraculously reversed. These quasi-religious testimonies would end with statements such as “TAC has given me wings to fly”, “I now preach the gospel of Aids”, “I am like a born again, ARVs are now my life”.

These highly ritualised testimonies of faith, commitment and witnessing helped transform the lethal stigma of Aids into a badge of courage. Activists even used unnerving statements such as “HIV was a blessing in disguise” to convey how, through the support they gained through their activism, they came to make more meaning of their lives after diagnosis than before. These were striking indications that new HIV identities and forms of belonging were being forged during the fight against the pandemic.

These practices of active citizenship have permeated throughout the South African political landscape. Organisations such as the Social Justice Coalition, Equal Education, Section27 and Ndifuna Ukwazi have borrowed and adapted the TAC’s activist repertoires; they too now deploy forms of scientific literacy and data-driven activism to tackle systemic problems in public education, sanitation, policing and other issues that adversely impact upon the poor and working class.

The TAC’s contribution to health activism continued well beyond 2003, when antiretroviral therapy became freely available in the public health sector. Its current campaigns include monitoring the implementation of the National Strategic Plan on HIV and TB; improving ailing provincial health systems; campaigning for the declaration of drug resistant-TB as a public health emergency; and attempting to improve patent laws on essential drugs to promote public health. Despite these campaigns, there is still widespread denial and complacency about the ongoing crisis. Because treatment is available, it is widely believed that Aids is simply another manageable chronic illness, much like diabetes; Aids seems to have become normalised and bureaucratised within a technocratic biomedical system.

During the height of the Aids science wars between Mbeki and Aids activists in the early 2000s, I arranged to meet a senior Western Cape ANC leader to discuss why the Mbeki administration was embracing the Aids dissident position. This leader tried his utmost to convince me that Mbeki was probably taking up the dissident position in order to animate and catalyse the Aids activist fight against the pandemic. While I dismissed this highly improbable apologia at the time, in retrospect it seems there was some truth to the idea that life and death struggles against Mbeki’s denialism did indeed animate Aids activism. A decade after treatment began in 2003, people living with HIV are barely visible in the media and donors seem disinterested in supporting Aids activism. It would seem as if the provision of ARV therapy in the public health system “killed activism” and created the illusion that the crisis was over, notwithstanding massive problems of drug adherence, new infections, 1 000 deaths a day and regular medical stock-outs.

Aids activism is far from dead and buried, and the TAC is busy reinventing itself to address the resurfacing of Aids complacency and denial. For instance, TAC campaigns to fight donor fatigue include a global appeal to raise R10 million and a 10km Soweto Marathon where activists will run under a banner with the slogan “Running for Our Lives”. On December 1, on World Aids Day, the TAC will host an Aids Activist Reunion and Rededication to mark a decade of activism that contributed towards saving 2.5 million lives. These campaigns speak to a need to resist the normalisation and invisibilisation of everyday suffering under the myth that the crisis is over. Not only do we need to mourn the deaths and suffering under apartheid and the Aids epidemic, but we also need to remember the hope that activists were able to generate in dark times.

Watching David France’s 2012 award-winning film documentary How to Survive a Plague helped me to better understand Heywood’s indignant denunciation of current Aids denialism and complacency. The film documents how US activists forced an indifferent and homophobic Reagan administration to take Aids drug research and treatment more seriously. Jack Lewis’s award-winning film Taking HAART tells a similar story of how TAC activists in the early 2000s heroically fought the Mbeki administration’s Aids denialism. In both the US and South Africa, activists helped transform Aids from a death sentence.

Reading Kylie Thomas’s Impossible Mourning can help remind us of the creative ways in which South African artists and photographers have challenged our complacency and denialism about the “invisible crisis” that continues to plague our country.

A luta continua.

* Professor Robins is in the Department of Sociology & Social Anthropology, University of Stellenbosch. This is an edited version of his discussion of Kylie Thomas’s new book, Impossible Mourning: HIV and Visuality After Apartheid, which took place in the English department at Stellenbosch University on October 30.

** The views expressed here are not necessarily those of Independent Media.

Cape Times

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