Book Extract: The time of funerals

Section 27, Save SA and Unite Against Corruption activist Mark Heywood has written a book about the fight for social justice in the country. In this extract, he returns to 2003 to recount the terrible toll of Aids and the war between the Treatment Action Campaign, which he co-founded, and the ANC under then president Thabo Mbeki

Get Up! Stand Up! by Mark Heywood

Tafelberg, 236 pages, R260

2003 was the year in which I began to encounter the deaths of people close to me, people with a life force and vitality that I could never have imagined being quenched.

One of them was the Treatment Action Campaign (TAC) poet Edward Mabunda. Edward had grown up in Soweto, but in the 1980s moved to the wretched, poverty-stricken township of Winterveld. At that time, Winterveld had been at the heart of a bitter and violent uprising against the puppet Lucas Mangope’s Bantustan government of Bophuthatswana. Edward was a heroic ANC member who had been part of that struggle. Now he found himself battling the party he had fought for, and was intensely loyal to, over its refusal to provide medicines for Aids treatment, a position that would deny him his life.

Edward lived openly with HIV. He translated his passion and anger into oral poetry that he recited at every TAC march and meeting. The last time he took the stage was at the start of the Stand Up for Our Lives march. In Jack Lewis’ 2012 film Taking HAART the wonderful, vibrant Edward gives a rendition of his poem How can I sing a love song when my sweetheart is dying? By this time, Edward was already struggling with Aids, his legs were swollen and he had been in pain on the Treatment Train travelling from Johannesburg to Cape Town. But there is no sign of his physical pain in his performance.

Almost immediately after showing the march, the film cuts to an interview with Edward incapacitated in a bed at the Johannesburg General Hospital, his body stiff and mummified, explaining why civil disobedience was necessary. ‘We are prepared to die for this National Treatment Plan.’

Several days before his death, I visited Edward in hospital. I was accompanied by Willie Madisha, then the president of Cosatu, and Zwelinzima Vavi, its general secretary. I wanted them to stare death in the face. I wanted them to see Aids to cement their support for our struggle. From his deathbed and in a candida-choked voice, Edward made a heartfelt appeal to the ANC to change its policy on Aids, failing which he called for an escalation in the campaign of civil disobedience against the party he loved. He died on April 9 2003.

Edward’s funeral took place 10 days later. It was attended by hundreds of people. Because Edward had lived openly with Aids, we chose to bury him openly with Aids. This was very unusual. At the time, people were dying like flies, but very few deaths were openly attributed to Aids. The funeral of a TAC leader who had lived openly with HIV provided an opportunity to destigmatise HIV, to show communities that Aids could be a cause for pride and honour, not just shame. To break the silence. Edward’s funeral made manifest all the contradictions and conflicts caused at the grassroots of the ANC by its embrace of Aids denialism. The mourners were divided between TAC activists in their ‘HIV-Positive’ T-shirts and ANC branch members wearing ANC regalia. In the wake of the TAC’s civil disobedience campaign, a palpable tension between the two groups hung in the air. There were fears that TAC activists, most of us from outside the township, might be attacked by members of the ANC Youth League. Sharon [Ekambaram] recalls the day:

“I remember that TAC activists had to stand up to ANC leaders in the community to ensure that Edward was buried as an activist who fought against the ANC’s denialism. This fighting took place in the days preparing for the funeral. The ANC members wanted to bury him as an ANC member and cover up his Aids activism. The TAC members defied the ANC to ensure that he was buried as a leader of the TAC. The Gauteng TAC office produced posters of Edward and Charlene [Wilson, whose funeral was held in Pretoria that same day], which were put up all over the community in honour of both comrades. It was the ‘HIV-Positive’
T-shirts that were prominent when Edward’s coffin was lifted and carried to his grave, as was the case with Charlene and Sarah Hlalele. We always covered the coffin with a T-shirt, which was left on the coffin when it went down. The entire funeral proceeding, while deeply religious, was interspersed with beautiful singing and dancing by TAC activists in ‘HIV-Positive’ T-shirts, worn prominently as a mark of respect and dignity to honour the person who was brave enough to say that they had Aids.”

I attended two funerals that day.

Before driving to Winterveld, I had spent the morning on the other side of Pretoria in the coloured township of Eersterust at the funeral of Charlene Wilson. Hers was another open funeral. Charlene had asked to be buried in her ‘HIV-Positive’ T-shirt. As I looked at her in her coffin, I could still sense her pride. It was hard to comprehend her stillness in death. In life, Charlene had been a raucous, loud, humorous, vibrant coloured woman.

The racial demographic of TAC’s membership reflected the racial epidemiology of the Aids epidemic. Although the new South Africa eschewed the apartheid classifications, and although everybody rightly rejects them as a basis for privilege, sadly race and identities – real and imagined, imposed and inherent – have been internalised and remain very much a part of many people’s sense of self and community. It used to be said that ‘HIV does not discriminate’ on the basis of race. But it does take full advantage of inequality and class. Because of our history, class and poverty overlap with race. And there is, thus far, little solidarity between people across class, or at least little solidarity between rich and poor. As a result, coloured, Indian and white people have always made up a minority of the activists in TAC.

Charlene made up for her minority status with a loudness that drew attention to herself. She was fully supported in her activism by her wonderful mother, Louisa Hobson, as well as by her sister and brother. To be open about HIV infection in a coloured community, where many people regarded HIV as an African disease, was even more unusual. But Charlene and her family were as open as open could be! It was hard to imagine someone more alive than Charlene. I remember watching her give a talk about Aids to students at Wits University and thinking: ‘This woman is so alive that she cannot die.’

But she did. In March 2003 she developed lactic acidosis, the rare but aggressive side-effect of the antiretroviral drug stavudine (d4T) that had felled Sarah Hlalele a year earlier. She was quickly hospitalised. We organised for her to be placed under the care of the wonderful nurse-activist Sue Roberts, but it was too late. I was with her at the moment she died. I thought that I saw a single tear gather in the corner of one eye a minute before her death, as if she was consciously surrendering her life. As soon as she died, I left the hospital to go to a meeting at the TAC office in Braamfontein and tell her comrades of her death. The news was met not with silence, but with howls of pain and grief.


There was a lot of pain back in those days.

The terrible physical pain and emotional puzzlement as to why treatment for Aids would be withheld from activists like Edward Mabunda and Christopher Moraka, and tens of thousands of others, are not understood or felt by the apologists for Aids denialism. Aids was clothed in stigma and fear, so many did not see its terrible human toll. You had to be with me on the frontline to witness the pain. Members of the TAC, particularly its leadership, observed so many deaths that we might as well have been living through a war. I was witness to the carnage; I remember walking through graveyards after burying another TAC member, looking at freshly dug mound after freshly dug mound, mostly of young people and infants, the cemetery no sooner vacated by one group of mourners than it was filled by another. Traffic jams to bury the dead.

This is not something understood by those who, like the Reverend Frank Chikane, wish to reinvent president Thabo Mbeki as a global statesman. In fact, it’s not just that it’s not understood: it’s overlooked or forgiven. Mbeki may be urbane, intelligent and suave. But the fact remains that he has got off scot-free.

A peer-reviewed article published in the Journal of Acquired Immune Deficiency Syndrome has recorded the cost of his embrace of Aids denialism:

“More than 330 000 lives or approximately 2.2 million person-years were lost because a feasible and timely ARV treatment programme was not implemented in South Africa. Thirty-five thousand babies were born with HIV, resulting in 1.6 million person-years lost by not implementing a mother-to-child transmission prophylaxis programme using nevirapine. The total lost benefits of ARVs are at least 3.8 million person-years for the period 2000 to 2005.”

That record cannot be expunged. It will be there until the end of time. It must never be forgotten or forgiven.

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