It was a clear message to the nation that AIDS attacks indiscriminately and that there is no shame for a family that loses a loved one to AIDS. Mandela could have remained silent but he knew there were bigger stakes at play and that this was an opportunity for him to educate the nation, yet again, about a subject that was close to his heart. ‘That is the only way of making an ordinary illness ordinary instead of following those who are not well-informed,’ he explained.
The Stigma Index Survey referred to above found that although HIV related stigma and discrimination is still prevalent, this is lower than previously estimated and lower than most other countries in Europe, North America or Africa. This is good progress in the right direction
Stigma and discrimination are driven by the instinctive reaction we have when we face death, and confronting a person dying from any disease conjures up our worst fears and prejudices. The decline in stigma recorded in the survey is due, in large measure, to the wide availability of antiretroviral treatment and the dramatic impact it has had in reducing AIDS mortality. AIDS is no longer seen as a death sentence and the public attitude has changed.
Mandela was well aware of the link between stigma and the provision of ARVs. In March 2002, when he made a public call for the provision of ARVs for pregnant women during a visit to the Baragwanath Hospital in Soweto, he also spoke out about the stoning to death of Gugu Dlamini in one of the most horrific cases of HIV related stigma at the hands of men in her own community of Kwa Mashu.
The open and honest way in which we have come to terms with a major epidemic that now affects more than 6 million South Africans has also helped to reduce stigma. We talk openly about HIV even though it has the added stigma of being a sexually transmitted disease. In this regard, the role of the Treatment Action Campaign must be emphasised. The leaders and members of the TAC played a major role in putting a human face to HIV. Over more than a decade of being out there in the public eye and not in the dark shadows of homes and hospitals, the TAC has made the public understand that AIDS affects every community and infects indiscriminately.
Nowhere else in the world will we see the thousands of TAC activists, their members and supporters, wearing the now famous T-shirt of the TAC with the words ‘HIV POSITIVE’ emblazoned across the front in bold capitals.
Mandela himself donned the famous T-shirt of the TAC when he visited the country’s first ever public sector ARV site in Khayelitsha in December 2003. Photographs of the ‘old man’ in the TAC T-shirt went viral. This was a Madiba moment reminiscent of the day he did the same with a Springbok Rugby jersey. On that day he won the heart of every white South African. On this day he sent a message to the nation that he was on the side of people living with HIV.
The impact of Mandela’s public display of equal treatment and physical contact with people living with HIV, together with the kind of public disclosures of Edwin Cameron, Zackie Achmat, Masi Makhalemele, Prudence Mabele, Vuyiseka Dubula, Vuyani Jacobs and hundreds of HIV positive South Africans, has had a major influence on the levels of stigma recorded by the Stigma Index Survey referred to above.
The SANAC Stigma Survey makes a distinction between externalised stigma – stigma inflicted by a community on an individual – and internalised stigma which is self-inflicted, for lack of a better word. It found that PLHIV had made important life decisions because of their status. One third had decided not to have children. About fifteen percent decided not to get married and a similar proportion decided not to have sex. Sadly, 11% expressed suicidal feelings and 5% said they would not seek help if they became ill. SANAC has launched a campaign to address internalised stigma and working with government and NGOs to increase psycho-social support to PLHIV to address internalised stigma.
On the day of his birth, when he would have turned 97, we remember Nelson Mandela for the unique way he made us understand that we had to battle against stigma and discrimination if we wanted to win the war against AIDS.
This article first appeared in The Star newspaper on 16 July 2015