/ 8 June 2017

Memoirs of an activist: ‘The real heroes of the HIV struggle are still unknown’

Section 27's directorm Mark Heywood
Section 27's directorm Mark Heywood

The executive director of public-interest law organisation Section27, Mark Heywood, was a founding member of the Treatment Action Campaign and helped to lead the struggle for HIV treatment in South Africa. In his new book, Get Up! Stand Up! Personal Journeys towards Social Justice, Heywood recounts how the war was won — and its costs. In this edited excerpt, he describes the run-up to a landmark 2002 court case, brought against the state with the help of Sarah Hlalele, that forced the health department to begin providing HIV-positive pregnant women with antiretrovirals to protect their babies from the virus.

Joe Slovo praised “the hurly-burly of legal practice” as “satisfying and politically useful”. “The adversary system of court confrontation, with its contest of tactics and competing styles of forensic performance, allowed for creativity and some scope for self-expression,” he said. Slovo was right. Law is a wonderful discipline. But most of its practitioners that I’ve encountered remain conservative and hidebound. Law can be as much a straitjacket as a technicolour dreamcoat.

Slovo described the Bar as “basically a posh trade union” and many of its traditions as “something guild-like”. He saw a trial as “a battleground on whose terrain small and temporary social victories could be won”. But he warned that “the honesty and integrity of many of the old-style judges, which made possible the occasional redress of grievance even against white authority, also helped maintain the illusion that equal social justice for all might eventually be attained through the existing framework”.

Law remains a great protector of inequality. Most of the people who practise law do so on behalf of clients whose aim is to maintain the status quo, not to challenge it.

In this context, if it is to be effective, human rights and political lawyering have to challenge the established boundaries. The starting point is not to accept. It is to disrupt. This instinct to disrupt established and complacent orders is something I learned from punk rock, but very few lawyers I know have had the good fortune to make the acquaintance of Sex Pistols singer Johnny Rotten.

In recent years, we have become accustomed to “lawfare” over socioeconomic and other rights in the Constitution. It is amazing how much political dispute goes through the courts, something that causes great chagrin to the ANC leaders, who frequently cite it as being evidence of the “counterrevolutionary and anti-majoritarian” nature of the litigants and the courts.

But in the early 2000s, launching litigation against the ANC government involved taking a very difficult decision. The ANC was still young in government, Nelson Mandela — although no longer president — was still a giant on the political stage, and any sort of action that appeared to be against the ANC could be misrepresented as unpatriotic or worse. A great deal had to be done to persuade even the activist members of the Treatment Action Campaign (TAC) that litigation was a democratically mandated and not treasonous road to follow.

But that is part of the process of the maturing of a democracy and its citizens.

We began to collect the evidence that would tell a court the story of the unnecessary pain and suffering being caused by the irrational decision not to implement a prevention of mother-to-child HIV transmission programme. This evidence was recorded in affidavits, which, in human rights litigation, are repositories for the stories of individuals affected by human rights violations. These stories help to win the empathy and understanding not only of the court but also of the wider public generally.

Thus it was that one afternoon I drove to Sharpeville to meet with a young woman called Sarah Hlalele and ask her if she would support the case and tell her story in an affidavit. I drove into the dusty township and found the little matchbox house where she was staying. Met at the door by a member of the family, I asked to see Sarah.

She pointed to a withered young woman sitting on the floor in a corner of the house, eating soup directly from a saucepan. Sarah had Aids. Sarah had been denied access to antiretroviral treatment and was ill with various HIV-linked opportunistic infections.

Her brother had driven her from her own home, so she was staying with relatives. She was eating from a saucepan because her relatives were afraid of her and would not let her use the household knives, forks, spoons or cups. Sarah was drinking soup because she had candidiasis (fungal thrush) in her mouth and throat, which made ordinary eating and swallowing painful. She was a pitiful sight of lost dignity.

As we talked, Sarah wept and unfolded her tale. She had learned that she had HIV when she was still at school. When she became pregnant, she travelled 60km to Chris Hani Baragwanath (CHB) Hospital for care, rather than to the nearby Sebokeng Hospital, because of fear of being recognised and stigmatised.

Sarah was a member of an HIV support group and had been advised to go to CHB because it was home to the Perinatal HIV Research Unit. By the time Sarah arrived at the unit, the South African Intrapartum Nevirapine Trial (known as Saint) was up and running, proving that the antiretroviral (ARV) nevirapine was both safe and effective in preventing mother-to-child transmission.

Sarah enrolled and told me that, because she lived so far away from CHB, she had been given a single nevirapine tablet to take when she went into labour. But on July 18 2001 she went into labour prematurely.

In her own words:

“Because I did not know that I was in labour when the ambulance took me from home, I did not bring my nevirapine tablet with me. At Sebokeng Hospital, I told the doctor I was HIV positive. But they could not give me nevirapine because it was not available. I gave birth to a boy. They took my baby away because he was very small. I still wanted my baby to have nevirapine after he was born, but because he was so small they could not take him to CHB. I asked for an ambulance, but found out that the hospital had arranged a bus to transport my premature baby to CHB. I felt that this was not safe, so he did not receive the medicine. Now it is too late.”

Sarah’s son was named Kgotso. That day, as she told me her tale, her body was racked by bursts of sobbing. This made her appear even more pathetic and tragic. But by giving her story and becoming one of the first brave women to trust the Constitution, she began her own process of recovery and empowerment. That afternoon she took the first steps on a journey towards reclaiming her dignity.

One of the strengths of the TAC was our media profile. One of the weaknesses was that most reporting focused on Zackie Achmat and me. As a result, the real heroes of the TAC struggle are still largely unknown. The stories we were telling second hand should have been sought from and told by women like Sarah, Vuyiseka Dubula, Busisiwe Maqongo, Hazel Tau, Joanna Ncala, Portia Serote, Linda Mafu, Portia Ncgaba and many, many others. Each will have a different personal story with common themes. It’s not too late.

In Cape Town, Vuyiseka Dubula was one of the activists at the forefront of the TAC. She pioneered the TAC’s treatment-literacy campaigns and in 2010 was elected our general secretary. In the years after Vuyiseka joined the TAC her daughter, Nina, was born — HIV negative. In 2013 she ran and completed the 89km Comrades Marathon. We crossed the finishing line together, hand in hand, in 10 hours and 53 minutes. In 2014 her son, Azania, was born — HIV negative. In 2017 she will complete her PhD.

Over the nearly two years that I knew Sarah, I witnessed the unfolding petals of a new personality. The person I first encountered as a shrivelled human wreck came back to life. If Sarah had lived, the story she would have told would have been similar but different. We’re all variations on a theme.