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Siyayinqoba Beat It! 2005 Episode 9 –

Good leaders lead

In this episode we explored the impact of political leaders disclosing that they have lost families members to HIV/AIDS and how the public disclosure of Justice Edwin Cameron was used as an advocacy tool to push for access to treatment for all. Studio guest, Azola Goqwana, shared a youth perspective and debated the role of HIV/AIDS leadership in all sectors of society with Siyayinqoba support group members.

Jason Wessenaar: Hello and welcome to Siyayinqoba Beat It! support group. My name is Jason. In the Siyayinqoba support group we are all living positively with HIV. Each week we get together to discuss issues that affect our lives living with HIV, from positive living to promoting antiretroviral access in rural areas. u-Siyayinqoba uhlelo lwakho lokuphila ngcono ne-HIV. Uma uphila negciwane le-HIV {isiZulu} [Siyayinqoba is your guide to better living with HIV/AIDS. If you’re living with HIV] or have a partner, friend or a family member living with HIV, this programme is for you. This week we are talking about the role of leadership in the fight against HIV/AIDS. In 2002, Madiba brought out the poster behind me, talking about “Good leaders lead”. He was appealing to all of us to get involved and provide leadership in the struggle against AIDS. Today we celebrate what Madiba, Graça Machel, Albertina Sisulu and others have done to provide leadership to promote openness about HIV/AIDS. But what do we need and expect from our leaders, not only our political leaders but leaders at work, church and in sports and entertainment and wherever we may be; and of course from us, people living with HIV/AIDS. Our youth guest today is Azola Goqwana from Cape Town. Welcome Azola. First let’s hear how our leaders have responded to the impact of HIV/AIDS in their own lives.

Good leaders lead in the fight against HIV/AIDS

Nelson Mandela (Former President of SA): And motivate communities and try as much as possible to help them. It’s very important that we should show leadership and we show leadership not only by grasping information but by using that information in order to turn this pandemic around. When I suffered from TB, I announced it and my friend, Walter Sisulu, took my side and he said: “Madiba, these are personal questions, you must keep them to yourself”. But I discussed the matter with him that it is better to always discuss and to state what you are suffering from. Eventually he was a reasonable man, he was our father, he understood how reasonable it is for us to announce what we’re suffering from.

Mangosuthu Buthelezi’s son Nelisuzulu died in April 2004

Mangosuthu Buthelezi (IFP Leader): HIV/AIDS is a priority for this nation. It is a priority and a challenge in so far as more than five million of our people are infected. I even lost two children through AIDS. I found that that challenges me to do something about it, that’s why I’m involved in this struggle to try and counter this pandemic.

Nelson Mandela’s son Makgatho died in January 2004

Nelson Mandela: The only way of making it appear to be a normal illness just like TB, like cancer, is also to come out and to say somebody has died because of HIV. And people will stop regarding it as something extraordinary, as something as an illness for people who are going to go to hell and not to heaven.

Support group

Jason Wessenaar: We’d like to express our condolences to the families of the leaders who have spoken about their sons and daughters who’ve died of HIV but also commend them for opening up about the fact that their family members died of HIV. But I think the question is: “What do you guys think the impact is that our leaders have spoken about how HIV has impacted them in their lives?”

Primrose Mathabatha: The point that Mandela has made about his son’s death has made a great impact even though he only came out because the son died. He could have come out while his son was still alive and say: “My son is living with AIDS” and probably the message would be HIV/AIDS is a reality and it can affect any family, rich, poor, politicians, business et cetera.

Busisiwe Maqungo: It’s right, it could have made a huge impact if they came out while their children were still alive but sometimes it’s not up to them. It’s not Mandela who’s living with HIV, it’s his son. The same thing happened to me before I came out, I always tell people that I never came out about my status while Nomazizi was still alive because I also have to respect her life. Yes, she was a child but still coming out with my status also exposes her. That’s not respecting her. Now, she died, that’s when I felt comfortable coming out because she was no longer in the picture. As much as Madiba would have loved to come out about his son being HIV positive, but still the decision was up to them, if they choose to disclose or not. Whether they decide to disclose or not, their parents could not do it for them. It would have made a huge impact but their parents had to limit their boundaries.

Azola Goqwana (HIV/AIDS activist): I agree with Busisiwe on what she’s saying in the sense that it’s not up to the person who is the parent to come out with one’s status. But what I’d like to say is, aren’t there any leaders in South Africa who are alive, who are living with HIV? For me that would be the biggest question and it gets me very uncomfortable when we only focus on Mandela’s son, what about everyone else in Parliament, what about everyone else in bigger places, why aren’t we speaking about those people? Then it becomes Makgatho’s issue, it becomes Graça’s, which of course would have made a big impact had they come out, then what about everyone else who’s also a leader?

Vuyani Jacobs: Ukufa kwi-HIV kuye kwadala i-impact eninzi, okokuqala abantu babhubhe nje then aba-recogniswa bebhubha. Then okwesibini abantu kwasetyenziswa ukufa kwabo njenge mobilisation tool ukuthi sizawukwenza ukuthi sizo mobiliza and I think Walter was right ku-Mandela to say my son died of HIV. {isiZulu} Dying from HIV has created a huge impact. First, people just died without recognition. Then, afterwards when people died it was used as a mobilisation tool. And I think it was right for Mandela to say my son died of HIV. Still, I have great respect for Sisulu to say my family member died of HIV but the issue is that this leadership that dies of HIV in high standards actually are not really having double because they could have had double impact as you say, like Khabzela did. Khabzela had a very good impact.

Azola Goqwana: But I’m not sure Khabzela had a good impact because for Khabzela to say at that point in time, just because he got sick in studio, then it doesn’t give a chance to the next person who wants to live longer with HIV because people will use Khabzela as an example. I don’t think Khabzela had a good impact, I really do not think so. Maybe he made people realise that HIV is around but not that he was promoting positive living at all.

Vuyani Jacobs: But I believe he had an impact, I say four things. The first one is that he was entangled in problematic political, ideological, denialist programmes of South Africa and he died just like a lot of middle class black people that are dying everyday. And they die denying they have HIV, they are dying not going through the overall process. Now the issue of really living becomes a shared thing because of the access of myself to the public health system and a public health system that demands openness, it actually encourages openness. They are living in a system that encourages privacy of HIV. At the same time his death played a role because people talk about it on YFM. It created a campaign. Of course I would say he died early, he could have lived longer. Then again you have to look at it in another way that he had other problems. He had problems like the ones people in our communities die from which is not getting treatment on time, not trusting that the medication will work and being scared of HIV and refusing to accept that you have HIV. That means his challenges were the same as everyone else’s. For me, I respect that.

Jason Wessenaar: We’ll be back after the break, don’t go anywhere.

Jason Wessenaar: Welcome back to Siyayinqoba Beat It! Support Group, the programme for everyone infected and affected by HIV. Siyayinqoba is very proud to have a long standing relationship with one South African leader who has been very open about his HIV status and is in good health, Judge Edwin Cameron. Edwin disclosed his status when he went before the Judicial Services Commission for a job interview, he didn’t have to do it but he felt the need to take a stand. The next insert is from the Siyayinqoba archives.

Good leaders lead in the fight against HIV/AIDS

Judge Edwin Cameron: For me as a judge with access to treatment, with support of friends and colleagues around me, was one thing to come out because I had a choice. But for most of South African with HIV/AIDS, four million of us, that choice doesn’t exist. I wanted to take a stand because I hoped that my taking a stand, with all my priviledges and advantages, might in some way help to create a climate of openness where other people could also have a choice.

Judicial Service Commission – 1999

Judge Edwin Cameron: This is the statement which I’m reading after my interview before the Judicial Services Commission today. Today I’ve chosen to disclose before the Judicial Services Commission that I’m living with AIDS, I’ve spoken out even though legally and ethically I’m entitled to remain silent, because of talk in the legal community about my health condition which seems best to deal with frontally. The choice to speak is available to me for very particular reasons; first because I have a job position that is secure; second because I’m surrounded by loved ones, friends and family and colleagues who support me; and thirdly because I have access to medical care and treatment that ensures that I remain healthy, strong and productive. For millions of South Africans living with HIV/AIDS, these conditions do not exist, they have no jobs or their jobs would be at risk if they spoke about HIV, and most importantly they do not have access to proper medical care and treatment. For them in a still hostile climate, the choices are strictly limited.

Dullah Omar (Former Minister of Justice): I think that Judge Cameron’s disclosure is extremely courageous, I admire his courage. I think it was very important that we must demonise the whole issue of HIV/AIDS and his disclosure will certainly make a contribution towards public education in this regard.

Judge Edwin Cameron: It is my hope that my decision to speak out today may contribute to a greater climate of openness and caring and to the prospect of proper medical treatment for all South Africans living with AIDS and HIV.

Support group

Jason Wessenaar: What can we as people living with HIV, not just in this room but also people at home, learn from Edwin Cameron?

Zack Smit: We can learn that by him setting an example, they can take on that whole attitude towards creating a leader in themselves, yeah.

Vuyani Jacobs: When I met him the first time, I actually said to him can I see your medication? The reason for that was that he was the first person I would say I knew was taking ARVs and that he was actually very ill and he told me personally how ill he was. And I looked to him based on that and I think it gave me the confidence of taking my drugs on time and taking them religiously. And I take that kind of leadership from him, as a High Court Judge earning a lot of money, openly telling everyone that I can have access to life by buying the drugs. It gives us a lot of questions in terms of why then are we not part of this, why are we not accessing life? Because he openly said that in the conference, that he’s buying life.

Ricardo Moses: My point of view I will say that is also what happened to me when I disclosed in prison, the prisoners also came to me and said you sent a very good message to us and I was the first one who disclosed in that prison. When I left there, there were 12 guys who disclosed. So at the end of the day, the other guys who didn’t want to go and test, I was a role model for them in there, so that is also a message. That’s why I say, if the nurses and all those people, come forward to disclose, then this things can be controlled.

Jason Wessenaar: One thing that I respect is that he used his disclosure as an advocacy for people to access medication, for people to access drugs because he was standing at a position of he is able to get things, it’s easy for him to get things but then he was thinking about millions of other South Africans where at that time, did not have access to medication. And for me, I think that’s one other thing I will take away from that, I’d respect him for that. He used his disclosure to advocate for most of us here on drugs.

Azola Goqwana: I think he had taught a lot of people who are in the same stage or in the same calibre as he is that there is a possibility of you doing a job very well but still live positively with HIV. Like Jason has just said, he was advocating for people to use treatment and he knew his influence and he’s living that. So which is why he knew exactly what he wanted to do, so I think as ourselves, we need to know why we do ABCD not to do it because we want publicity to be on the City Press and that kind of thing.

Jason Wessenaar: We talk more about leadership and HIV after the break. Stay tuned.

Jason Wessenaar: Welcome back to Siyayinqoba Beat It! Support Group. We’re talking about what we as people living with HIV/AIDS can do to provide positive leadership and promote openness and acceptance of HIV in our communities.

Vuyani Jacobs: What I’ve seen, mna ndibone lonto, {isiXhosa} [I saw that] the black middle class like to defend themselves, they like to defend those that are in power. Now, based on that assumption, I would say that is why they die quicker because they end up getting entangled in this issue of the minister saying that the president says that, and they end up more confused. And they don’t access themselves into public services and public health. Njengam uba ndisebenzisa i-public service, phaya ndifumana the best advice, the best education imfundiso eyiyo nolwazi olulo. Because bona bethanda ukudifenda i-system ba-end up beriska ubomi babo. Ndiyayazi for instance kwathina sinetshomi esizaziyo ukuthi zibhubhe nge-HIV ngoba zingakholelwanga kwizinto ezinobanceda. {isiXhosa} [From the public health service I get the best advice and the best information. Because they always want to defend the system, they end up risking their lives. I know we also have friends who died of HIV because of not believing in things that can help them because of leadership problems.]

Jason Wessenaar: Vuyani, to an extent, I agree with you. I think people do have the right not to speak about their HIV status, this much everybody has. My question is why is it that leaders or political leaders and people who are middle class, why are they not opening up, why are they not talking about their status, why are people in the media, the entertainers, the musicians, why are they not talking about their status? Maybe it is a question we need to be asking before we point fingers?

Lihle Dlamini: Ngoba abafundisekile, abazi nje about i-HIV/AIDS. Abazi ukuthi ingena emzimbheni, yenzani abazi ngama-opportunistic infection and all that and it’s up to us thina Bantu from the grass root ukuthi sibafundise ukuthi yini i-HIV. Nabo kumele bezimisele uba, ngoba siyazi sifana noodokotela. [I think it’s because they’re not educated about HIV. They know nothing about HIV/AIDS. They don’t know what happens when HIV enters the body and they don’t know about opportunistic infections and all that. It’s up to us, people from the grassroots, to educate them about what HIV is and they must be willing to listen because we know more, we are like doctors.] We know about HIV, I know the lifecycle of HIV like the back of my hand. And they should be prepared to learn from us as well. If mina ngivolontiya is’khathi sam, my information ukuthi ngiyobanikeza [If I use my time to volunteer and give people information,] they should be willing to learn from us. Bangasibukeli phantsi bathi these are the people from the grassroot and they know nothing, bamele bavume ukuthi bafunde kuthi. [They shouldn’t look at us as people from the grassroots who know nothing. They should accept the information from us.] {isiZulu}

Ricardo Moses: Leadership, hy begin in jou huis so jou kinders hulle kyk op vir jou, So vir my kinders is ek ’n leader deur die feit date k met my status uit gekom het ek is sterk daarin en ek bly daarin en hulle groei daarin, groei in daardie leadership op. My rolemodel wat ek in parliament het as hy, hy’s nie vir my ’n leader nie want hy kom nie uit, die HIV frame werk is daar gesit maar hy werk verby dit. {Afrikaans} starts at home. Your children look up to you. I’m a leader to my children because I’ve disclosed my status. I remain strong and they grow up under that leadership. My role models in parliament aren’t leaders to me because they don’t disclose. The HIV framework exists but they work past it.

Busisiwe Maqungo: Can we be realistic here? Kumntu o just a common person pha e-Mfuleni, e-Site C, kubo i-leader bayazi ingumntu opha epalamente, bayazi ingu-Madiba, nasemntwaneni uba ngaba uthetha nge-leader wazi ingulamntu uphaya. {isiXhosa} [To an ordinary person living in Mfuleni or Khayelitsha, a leader would be someone in parliament, like Madiba. Even a small child knows this and they look up to them for motivation. So they look up to those people for izinto ezizawuba motivate nezinto ezizabanceda apha elantukeni. [for things that will motivate them and things that can help them living positively with HIV.] I’ve been open about my HIV status since I don’t know when, that never triggered anyone from parliament to reveal their HIV status or that of their children. Madiba umntwana wakhe osweleke yingculaza [revealed the status of his son who died of HIV.] That triggered someone from the English parliament, came out and said here I am because of Madiba that gave me courage to come out about my HIV status. {isiXhosa}

Jason Wessenaar: No, but you are talking about somebody in parliament in India, that person can relate to Mandela. Madlamini is a leader for whoever is a leader at that point, a person can relate to.

Vuyani Jacobs: Guys, you agree, you all agree. I think what we’re all saying is that there are layers of leadership and those layers are all important which means that the layer of leadership within your house, because you are a leader within your house, within your family, within your community and then you have the street leaders. And political leaders actually fall within that. There’s leadership of the Ramaphosa’s, Tokyo Sexwale’s, those are the leaderships. Guys, we must be honest, they are leaders because they own big money and big companies. Their families have an impact. If they can come up, I’m not saying them as individuals, them as a class can come up and say: “I have HIV positive and I can live longer.” Look at Magic Johnson, he’s a middle class and a black American and he’s living with HIV for longer, he made an impact.

Azola Goqwana: Vuyani, the minute you generalise leadership, you’re going to have a problem because what you’re pushing us to do is to speak at a certain scale of leadership. For instance, Mbalula, for me, the president of the ANC Youth League is the leader at that level, he is my leader. Therefore, for a kid who’s 13, the person presenting YoTV is a leader to them. Not everyone is thinking economically here, everyone has all sorts of things in their mind therefore we cannot stand here and say leadership has to be parliament, then we’re going to lose it. Speak on your perspective, I respect that as a politician, let me speak on my Arthur ‘sik’ikhekhe’ and leave it like that.

Jason Wessenaar: Siyabulela Azola [Thanks to Azola], the support group nani babukeli emakhaya [and the viewers at home]. We hope that you’ve enjoyed the show and are feeling the Siyayinqoba Spirit, that together we can beat it. If you have any questions, views and comments about the show, please contact us on the numbers below. Join us again next week on the Siyayinqoba Beat It! Support Group. Till then stay healthy and remember we can beat HIV.

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