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Beat It! 1999 Episode 1

In this the first episode of Beat It! 50 people infected and affected by HIV joined the Beat It! team to discuss their expectations of the show. They also discussed disclosure, stigma and discrimination. This stigma and discrimination in society was made evident by the episode's Special Report which looked at the murder of Gugu Dlamini in December 1998 because of her HIV positive status.

Mercy Makhalemele: Welcome to your first Beat It! programme.

Sipho Nhlapo: Siyanamukela ehlweleni lokuqala iBeat It! phecelezi yinqobe. {isiZulu} [Welcome to the first episode of Beat It! - just beat it.]

Mercy Makhalemele: Yinqobe yihlwelo lami nawe kuze sazi ukuziphilisa ngengciwane lengculaza. {isiZulu} [Beat It! is our guide to better living with HIV and AIDS.]

Sipho Nhlapo: Beat it! is your guide to better living with HIV/AIDS.

Mercy Makhalemele: Hi, my name is Mercy Makhalemele born and bread in Ndofire for those of you who don't know it, that's Meadowlands. I have been involved in the HIV/AIDS struggle as a person who is living with HIV/AIDS for six years.

Sipho Nhlapo: Hi, my name is Sipho Nhlapo born and bread in KwaThema, Elandstown. I've been a political activist since the generation of 1985; I'm also a person living with HIV. Beat It! is your programme, it is aimed at everybody living with HIV/AIDS including our families, our partners and our broader community.

Mercy Makhalemele: Sipho you know okwa manje {isiZulu} [at this time], we know of three million people living with HIV/AIDS in South Africa, bakhithi kulelilizwi lethu {isiZulu} [my people in our country], and for years we've been hearing about HIV/AIDS as a death sentence. As if there is nothing out there that could help me and you who are living with diseases to struggle and beat HIV/AIDS.

Sipho Nhlapo: Yebo kunjalo ke {isiZulu} [It's like that] Mercy, but Beat It! will talk to us about what we can do to stay healthy. We will look at what foods we can eat to help our bodies, how we can reduce our stress levels and what medication we should be receiving.

Mercy Makhalemele: Beat It! will defend equal rights of people who are living with HIV, ngisho wona amalungelo wabantu {isiZulu} [yes, I'm talking about human rights] and yes, our sex life doesn't end when the doctor tells us we have HIV. So let's be open about it and talk. Beat It! will encourage and support openness to the community.

Sipho Nhlapo: Usho etshweni we ke {isiZulu} [That's it] Mercy, to kick off Beat It! We have invited into the studio 50 people living and affected with HIV/AIDS, their partners, families and friends from all over the country to talk about their expectations of Beat It! and what they feel are the biggest challenges facing the HIV/AIDS community and our country.

Mercy Makhalemele: You know Sipho I got to know about my HIV status through my pregnancy but I gave consent. So let's hear from the audience; ukuthi {isiZulu} [that]. How did you get to know about your HIV status?

Thembi Nhlimba: My name is Thembi Nhlimba from Mlazi. Mina angaze ngithole iphepa the time bangitshela ukuthi ngiposithivu first abazange bangiteste, batesta ingane base bathi ewardini kugcwele abantu ingane yakho inengculaza kosho ukuthi nawe unayo. {isiZulu} [I was never given any consent paper to sign the time they told me that I'm HIV positive, first they did not test me but my child and then in the ward full of people they said to me your child has AIDS and it means even you, you have it, just like that.]

Audience 2: Kithi kubenenkinga nje ngoba it was surprising ngoba abazalibami baze before mina gazi ukuthi ngiHIV posithivu. Ukhe wayibona into efane njengaleyo uma wazekucala ukuthi ngiHIV positive. {isiZulu} [At home there was a problem because it was surprising that my parents knew before me that I'm HIV positive. Have seen something like that, my mother new first that I'm HIV positive.]

Mercy Makhalemele: Parents get to know first about their children's HIV status.

Seabelo Kgarosi: I did not know what HIV was by that time, I did not know whether it was dangerous or not, I just said yes, then I went for it, the results were positive. I didn't receive pre-test counselling.

Mercy Makhalemele: Before your test and after did anyone speak to you about it.

Joyce Malupang: My name is Joyce Malupeng, mine is also a different story, I was raped and I was breastfeeding a two month old baby. They did not tell me ukuthi [that] they were going to take blood form me for HIV test and for me it was difficult because abangitshelanga lutho [they didn't tell me anything] and the only thing I knew about AIDS it was that Iyabulala [that it kills] so I was scared ukuthi [that] I'm going to die. {isiZulu}

Sipho Nhlapo: You know Mercy I still clearly remember how difficult it was to come out with my status for the first time. There were all this questions that who I should tell, when I should tell them and what would I say. I would like to hear from the audience as to who was the first person you told about your HIV status.

Audience 5: The only person I told about my status was my parents after testing positive.

Audience 6: The person was my husband because he was my sex partner and how I got to know about my HIV status was through going to take insurance policy and I wasn't explained anything, there was no pre-counselling, there was no signing of consent form. I gladly went for the HIV test because I did know much about HIV at that time in 1992 and my results I was just telephoned and told that I must just go to my doctor, to my nearest doctor, I went with my husband to the doctor, and the doctor said I'm sorry that I have bad news for you going to die in four days, I'm sorry in four years, in four years time you will die that how I got to know about my HIV status but I didn't let it affect me at that time but my husband was very much affected it really did affect him, he didn't want to disclose he didn't want to go any further than that.

Seabelo Kgarosi: When he met me, he was afraid to tell he was HIV positive because he feared that I would not fall in love with him and he was alone for a long time, he was lonely.

Mercy Makhalemele: Is there your family member here your friend or your partner or who?

Audience 6: Yes, I'm fortunate in that, I've been supported today by my family, my wife and my children who are not HIV positive.

Mercy Makhalemele: In the audience, in the family...

Audience 6: Yes in the audience, my wife is just behind me.

Mercy Makhalemele: Oh wow! So let's just hear because I think this is where when we talk about the community it is family, family is community. Let's just hear how is it to accept a person, how do you feel?

Audience 7: I'm Hildegard and I would just like to say I am still negative, my children Natalie and Garth all negative and eh only my husband that is positive. And we, it was hard in the beginning very, very hard but I have accepted it.

Sipho Nhlapo: I have come across people who were quite surprised to find out that, I and many others are still living a relatively health life. People bakwethu ngithanda ukwazi [I would like to know] what is your impression, do people understand what is the difference between HIV and AIDS. Yebo, mfhowethu? [Yes guys?] {isiZulu}

Audience 8: Yebo, mina ngingu Ozzy wakhamhlathswa, KwaZulu Natal. Ngi ncabanga inkinga ekhona engiyitholayo emphakhathini waKwaZulu Natal hikuhlukanisa phakathi kwe HIV ne AIDS. Abantu ababheki ukuthi, uma uHIV uhumuntu osengaphila, bazi nje ukuthi umase unengciwane soneAIDS uhumuntu ofanele ubemncane, use unelenkinga ubukheka umncane. So they don't believe semabakubona u philile uhumuqemena. That's the problem ekhona njengamanje. {isiZulu} [Yes, my name is Ozzy Mhlathswa from KwaZulu Natal. I think the problem that I'm finding that here in the community of KwaZulu Natal there is no distinction between HIV and AIDS, people they don't look at it that if you are HIV you are a person who can live, they only know that if you have the virus you have AIDS, you need to look thin unhealthy, you have that problem that you are thin. They don't believe when they see you healthy and strong. That's the problem that we have at present.]

Audience 9: Abantu abaningi ngephela bakholelwa ukuthi , babone umuntu oHIV ufile. Ngesikhati ngishonela ngumtwana kwaba yisikhathi baqala ukhobana umuntu oneHIV uyashona. {isZulu} [Many people really believe that; they must see a person who is HIV positive dead. The time my child passed away that was the first time they saw and believed that when you are HIV positive you die.]

Sipho Nhlapo: I get the impression that there are people out there who deny that HIV/AIDS exists. What do you think? Do people take HIV/AIDS seriously?

Audience 10: Abanye banokuthi masiya izindaweni siyofundisa ngathi ukuthi siyaphila nalo igciwane bathi hayi niyabheda nina, "Nithengwa nguhulumeni ukuthi sizothso ukuthi nine gciwane." {isiZulu} [When we go to other places to educate people about ourselves, people who are living with HIV, they say that we are talking nonsense; "You've been bought by the government because you don't look like people who are HIV positive."]

Audience 11: Our people ne, bakholwa ngokubona. Bazokutshela ukuthi abakaze babone umuntu oneHIV. {isiZulu} [Our people, they believe in seeing. People will tell you that they have never seen an HIV person.]

Seabelo Kgarosi: My father-in-law is a traditional healer, so he knew about his son's HIV status and he knew what he was going through, so he called me and said I'm pregnant with a snake.

Mercy Makhalemele: Abantu bacabangani nje emphakhathini. {isiZulu} [What are the myths about people who are HIV?]

Audience 12: And actually what they say, you must get a person who is younger than you like umuntu onathirteen years [a person who is thirteen]; oyivirgin [virgin] and then you sleep with that person and then boom it's all over. {isiZulu}

Sipho Nhlapo: Do we agree here that this is ignorance or society ignorance?

Seabelo Kgarosi: From that night, I never had sex with my husband again because he was afraid of being bitten by a snake.

Sipho Nhlapo: Manje [Now], let's take a look at this Beat It! Special Report on the death of AIDS activist Gugu Dlamini and afterwards we can get your comments and reactions on the issues of ignorance and discrimination. {isiZulu}

Special Report - Gugu Dlamini

Mercy Makhalemele: Ignorance and discrimination usually goes hand in hand as was the case in the murder of Gugu Dlamini who died in KwaMashu, KwaZulu Natal on the 12th of December 1998. In the following report we pay tribute to this HIV/AIDS activist whose murder highlights the need to fight ignorance about HIV/AIDS and campaign for openness.

Narrator: People die needlessly everyday because of AIDS, many because they simply cannot afford to pay for medication and treatment. Some die because of prejudice and hate. Because of the hostility and discrimination they encounter most people with HIV/AIDS are living in fear or silence. Among our three and a half million people living with HIV/AIDS it is still difficult to find more than a few hundred people living openly, free of harassment.

Musa Njoko: We have more women who are open about their HIV status than men. I don’t know if that explains to us the issue of men being in denial more than women or being even more ignorant about the disease.

Prof. Ronald Louw: People coming out about their status are going to be pioneers; they are going to be breaking new ground.

Narrator: During 1998, NAPWA, the National Association for People Living with HIV or AIDS, and the KwaZulu Natal Department of Health encouraged people with HIV or AIDS to disclose their status and encouraged local communities to except them.

Narrator: Gugu Dlamini was a 36 year old single mother from Kwamaneza a township near KwaMashu. She was one of the volunteers of the provincial Department of Health Campaign, inspired by the disclosure of others, Gugu publicly declared her HIV positive status and worked on behalf of the disclosure and acceptance campaign in her township. She became an outspoken anti-AIDS activist.

Dudu Dlamini (Gugu’s mother): She came and said I’m HIV positive and I’ll be coming forward to tell people the truth to help them and I meet a lot of people who’ve got the same thing I’ve got, but they look healthy and they told me it is helping to come forward. I said, “You think you will be okay?” “Your friends they…” She said, “No I don’t care about my friends now I care for my life.”

Promise Mthembu: She went on radio, she was threatened; there was no support and the she disclosed on World AIDS, the event that was held on the 26^th. She said that there were threats but there was no support, there was no one to take that up.

Dudu Dlamini: She’d keep on phoning and coming to tell me, she cried. She said the people they come, they threaten me.

Jabulani (Gugu’s boyfriend): Some of the people they didn’t like her, to stay with her even they don’t want her to touch them or to drink together with them.

Captain Zondi (Head of Detectives, KwaMashu): People around in the area they accuse her of coming out clean and clearly that she was HIV positive. Saying that now the image of the place is damaged through her coming out clearly to say she is HIV positive.

Prof. Ronald Louw: Any threats against an HIV positive person, threats against their physical safety or their life, I think the threats are totally unacceptable. Never can we tolerate that.

Promise Mthembu: We are not dangerous. It is them, people who are HIV negative that are dangerous to us. If you get threatened; if you get thrown out of your house there should be some kind of support that you get and the police should support us as well because she (Gugu) reported to the police that she was being threatened but there was no action.

Narrator: Gugu Dlamini was assaulted twice on the 12^th of December 1998. First in the afternoon she was punched by a man after a campaign workshop in KwaMashu. Witnesses reported this assault to the police at the KwaMashu Police Station who sadly failed to respond to this situation. Afraid to go home alone and waiting for police to arrive Gugu came to this shebeen near her home. She told people here of the attack on her, she named the man responsible and warned that he might try to kill her. Later that evening in the same shebeen, Gugu was again confronted by a man who physically attacked her. She was taken outside and battered unconscious.

Jabulani: I hear the story. When they hit her they asked her: “How many people they die with you?”

Narrator: After the attackers were done they sent a message telling her boyfriend: “You can come fetch your dog. We are finished with her.”

Narrator: Four hours after an ambulance was called Gugu eventually reached a hospital.

Mandisa Dlamini (Gugu’s daughter): Igama lami nguMandisa wakwaDlamini, nginomunyaka ongu13. Ngaye ngazitshela nje ukuthi angase ashone. Ngangithi umhlambe ngutswala hlambe bekha phuzile, ngoba bekha phuza, bengithi nje uziphuzele, bengingayithseli hlambe angase ashone ngoba sathisifika bekha phefumula, sathi sifika lana edlini samugeza kahle, samusula, samulalisa ebizi ahona nje. Ekhuseni bangithi ngiyavhuka bathi seka hambele bamuyise esibhedlela KwaMashu Polyclinic. ePolyclinic bamudlulisela eKing Edward Hospital, eKing Edward base bamuyisa eWentworth Hospital. Lasathi siyaya nomamkhulu kuhulesithathu bathi ushone ngonsumbuluko. Sabuya sizosho la ekhaya. Angiphathekanga kahle nga phatheka kabi ngokuzwa lokho. {isiZulu} [My name is Mandisa Dlamini. I am 13 years old. I never thought she was going to die. I thought she was drunk because she used to drink. We didn’t think it was serious. We washed her and put her to bed. In the morning when I woke up she was not there. They had taken her to KwaMashu Polyclinic, from there to King Edward Hospital and from there to Wentworth Hospital. She stayed in the hospital. We visited her on the Wednesday, and they told us that she had died on the Monday. We came home and told the family; but I was still not feeling good.]

Captain Zondi: The people with HIV must be looked after and we must be seen sympathising with them. So, the community at large we feel they are with us (people living with HIV/AIDS); and we hope this incident will not happen again.

Prof. Ronald Louw: The community’s response has been that the police have appeared to have not followed up the investigation with the seriousness that we feel they should have.

Kitty Barrett (Lawyers for Human Rights): The reaction to Gugu’s death has been slow. I think from the community and from the legal system it appears from what I’ve heard. And I think that is the danger; it does appear to sanction her death, it does appear to be another example of you bought it… Often People’s reaction to HIV is that people who are infected is that they brought it upon themselves. Gugu needed immediate protection, Gugu needed immediate relief and now she needs immediate action and those working on her behalf need action from the courts. Again we see how our court systems and our legal systems let us down.

Prof. Ronald Louw: The HIV/AIDS issue needs to become a human rights issue. We need to see it as much more than an education issue, much more than a safe sex issue, it’s a political issue, it’s a campaigning issue, it’s an issue affecting everybody in their daily lives.

Promise Mthembu: The killing of Gugu Dlamini was a challenge or a wake up call to us, people living with HIV and AIDS workers.

Musa Njoko: What makes me angry is that the people who killed her are, again its men. We have more women who are open about their HIV status than men. I don’t know if that explains to us the issue of men being in denial more than women or being even more ignorant about the disease.

Narrator: Almost one year after the killing of Gugu Dlamini anti-AIDS activists were outraged at the fact that the murder remains unresolved.

Mercy Makhalemele: But this is not the end of the Gugu saga. In life she received little support and you know it seems that in death she is not supported either. It is vital that Gugu’s killers are brought to justice. If Gugu’s death goes unpunished it will send out a message to those living with HI virus that it is indeed not safe to come out with their HIV status.

Sipho Nhlapo: We urge everybody who is watching this programme to write to Mokothe Ndimtye the Attorney General of KwaZulu Natal and demand that the case be investigated properly. While we are still on the topic of discrimination we would like to know from the audience was Gugu the only one or have anyone of us today has been discriminated against? What other experience can you share with us?

Audience 13: In our townships we have problems when you are walking in the street especially ukuthi maba kwazi ukuthi unengculaza, uzobazwa bathi nangu lomfana onengcgulaza; en kelk akekho right [when they know that you have AIDS, you will hear them say, here is this guy who has AIDS; actually his not right]. Ngake ngagijimiswa habantu bafuna ukundibulala ngoba nginengculaza [I was once chased by people wanting to kill me because I have AIDS] and I mean uyibheke [look] at this thing. And mina [me] what I'm doing is to try and help them ukuthi bazi ukuthi umuntu oneHIV u bony [that they must know that a person who has HIV is not bony or whatever because that is what they are looking for] or whatever. {isiZulu}

Audience 14: Into eyenzakhaloyo ukuthi e, if abantu sebazi ukuthi uneHIV posithivu ephakhatini, benza ngathi bayakuthanda sometimes, ngoba sebaya undersitenda ngokukhuluma nawe ngeke bazebathelekheke but behind your back balokho bathi uyabona. Mhlambe uzothi uyahamba esitaladini kuthiwa thatha TKZEE, [People who know you are HIV positive will be nice to you but, behind your back they will gossip. If you are walking in the street they will shout: “There goes TK Zee [three letters – HIV]”, because that’s what they call HIV now.] And it is hurting to a person who is HIV positive. I mean ukuphuma kwako ukusho ukuthi [if you’re coming out] you are different, you are something else nje, ayikho [there isn’t] something special ngazi ukuthi bayithatha kanjani [knowing how they are reacting] and wena [you] on the other hand you are trying to tell the people HIV is not about dying. {isiZulu}

Sipho Nhlapo: One of the most common areas about discrimination against HIV people occurs when we go to hospital. Itini imibono yenu? {isiZulu} [What is your impression?] Do people living with HIV/AIDS get the treatment they need?

Audience 15: Okay ngingu Bongani KaZuma khona eMarizburg, ngisebenzela isibhehlela saseLadysmith eProvincial Hospital. So odokotela isikhathini esiningi ibengaba umuntu uHIV positive banbona ene sebazi amaresult ake bayamuthsela ukuthi abanayo icure ukuthi bamusize makhahambe ayohlala ekhaya,so izokwazi ukusizakhela ekhaya. {isiZulu} [Okay, I am Bongani Zuma from Maritzburg, I working in a hospital in Ladysmith at the Provincial Hospital. So doctors most of the time if a person is HIV positive, they see and know your results, they tell that person that we can’t cure you, they say that person must go home, so that they can be helped at home.]

Audience 16: I was ill in 1996 and I went to a state hospital, I was very, very ill and they wouldn’t admit me and I had to go to a private doctor and to a private hospital and I’m still trying to pay off those bills.

Audience 17: Then you take people to the hospital, you sit there from the morning until the following morning and you walkout with two panados with this person and they tell you don’t get excited as the counsellor it mustn’t affect you. At your clinics people get told take your TB treatment how can people swallow thirty tablets without food and the clinic says they are delinquents, how can you be a delinquent when you are hungry, is it the AIDS or is it the hunger killing you? What is it? Hunger and attitudes.

Seabelo Kgarosi: When I tell him about our HIV/AIDS status he answered me very simple that: “Yes, I know because I have been diagnose in 1991”; and that feeling of anger came in me, if I could have got more power or a gun with me I could have shoot him, I could have shoot him the very same time because he knew and he never told me and here we are now and the child is suffering.

Mercy Makhalemele: How can we encourage openness if outside the people are still thinking the way they are thinking, people are still behaving the way they are behaving, how are we going to be able to encourage openness?

Audience 18:We need to support abantu abaHIV {isiZulu} [people who are HIV] positive, when we go out to our community, when we doing our information, we need to create dialogues, we must not go microwaves because otherwise we going to end up with people not understanding and we need to create dialogues in family, say there is a person who want to disclose or distribute in the family. In our support group we going to that family, we use other people who are infected to go to the family and say don’t look at that one who is infected in your family look at this five people who are here, who have disclosed in their families who have been supported.

Audience 19:I think the government must take its part, the community must actually fight to make themselves heard, we the positive people must actually fight; make ourselves heard that we actually want to steal treatment because that is a drawback, people not want to be open because they feel why should I be open, why should I have my status known if nothing is going to happen.

Seabelo Kgarosi:If he could have told me, I could have married him because I loved him so much. I could not afford to miss him because of his HIV status.

Mercy Makhalemele:Well folks that was this weeks Beat It! programme, here we are talking openly about HIV/AIDS with people that are living with the disease as we all are and it’s not bad, so Beat It! and spread the word guys not the virus.

Sipho Nhlapo:Yes, there are thousands of us still living in isolation about our HIV status. This makes it difficult to get the information that you need for a better and healthier life. The more people are informed about HIV/AIDS the better. Like we said at the being of the programme this one is for all of us. So if you have a story or experience you want to share or you need advice or information. Let us know you can contact Mercy or Sipho at the number given below.

Mercy Makhalemele:So catch up with our next programme which will bring you reliable information on nutrition, medication your right nje ngomuntu ophila nesifo sengculaza {isiZulu} [as a person living with the virus] and a special report on the government intention to make AIDS a notifiable disease. And remember together we can Beat It! kau fela {Sesotho} [Everyone].

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