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Beat It! 2000 Episode 6

The Beat It! team spoke to Jabu Ngumane, diagnosed positive in 1994, and his family about his status and coming to terms with it. In the Special Report women’s reproductive rights, femidoms and women’s equality was discussed. The conclusion to the report was that by addressing gender inequality society will prevent many new HIV infections. In the Support Group the members discussed their active sex lives post-HIV positive diagnosis.

Paddy Nhlapo: Heita everyone out there, welcome back to Beat It! So, Mercy how was your week?

Mercy Makhalemele: I had a good one but you know life is not easy these days living in the world with HIV makes it very complicated, that’s why we are discussing the whole question of reproductive rights this week.

Paddy Nhlapo: You know so many men still don’t want to be told to use a condom.

Mercy Makhalemele: So often women are unable to protect themselves. Reproductive rights is all about taking control of our bodies and our sex life, without which we will never really be able to stop the spread of HIV, the virus that really causes AIDS.

Paddy Nlapho: Recently femidoms, that’s the female condom made its appearance, but what do women really think of these femidoms? Can they be used without men objecting to them?

Mercy Makhalemele: You will find out more in our Special Report on reproductive rights.

Paddy Nhlapo: After the break the Support Group gets into sex and a positive person, let’s catch you later.

Profile - Jabu Ngumane

Jabu Ngumane: Ukuqala kwam uku-diagnozwa it was ngo-1994, umangi-finda out. Bengine syphilis {IsiZulu} [I was diagnosed in 1994, it was because I had sypillis that I was diagnosed], it was rotating coming and going, so I didn’t know what was really happening. Well I went to one of the doctors in the township, Doctor Thlelani, and he diagnosed me for HIV/AIDS. I did not get pre-test counselling before and I did get other counselling after I found out I was infected. Same year, ’cause this other guy he is a doctor I went too, I won’t disclose his name and then I went to him and told him that I found out that I was infected and I want you to make another test so that I can be sure. After the test he told me that I won’t live for more than two years. So, I tried to commit suicide in 1994. I woke up in a hospital, then that’s when I got counselling at Ga-Rankuwa Hospital when I meet Sister Mudilahadi with Martin Maleti the late, its when I got whole counselling and the whole hope of living with HIV and AIDS. It was very difficult for me to come and disclose at home, but fortunately my mother got to know before. How I don’t know.

Mrs Ngumane (Jabu’s mother): Azange kubelula ukwamukela, kwaba nzima. Ngizwa ubuhlungu ukuthi umtwanam ngizomthini, but uNkulunkulu mkhulu, uNkulunkulu is great. Bazomamkela kanjani ngoba mina sengithukile, kwaze kwafika is’khathi ngakhuluma nobaba, ngamtshela, ubaba wathi akunankinga umtwana wethu lona, angeke simlahle. Ekufanele sikwenze la ekhaya as from today, simnike uthando oludlula olu besimnika lona. {IsiZulu} [It was not easy. It was hard. I was in pain, not sure what to do for my child. God is great. How would the family accept him? I had been shocked. Then the time came to speak to his father who said there is no problem, he is our son. We cannot disown him. Starting from today, we should give him more love than before.]

Jabu Ngumane: I have seen some changes in my life since I have become positive, I have change many things, I have change life strategy, bad things anymore, I don’t go around doing mischief, like maybe if I was not infected I was going to do but what I like about to be HIV positive is that you do enjoy life to the fullest because you know where you going to end off.

Mrs Ngumane: Abantu bayamangala ukuthi why uJabu angafi, why uJabu angapheli. {IsiZulu} [But here in the township people are wondering why Jabu is not dying, why Jabu doesn’t grow thin.]

Jabu Ngumane: Uyazi {IsiZulu} [You know] what’s happening, when you know that you are HIV/AIDS positive it’s a fright to the community.

Jabu’s Sister: Okay as uJabu angubhuti wami, mina the only thing I can say thina siyamthanda la ekhaya. Asimthatheli phantsi, asithi une-AIDS, siyamthanda, asithini ngoba ngubhuti wami and there is nothing wrong with being HIV positive. {IsiZulu} [Okay as Jabu he’s my brother, the only thing I can say is here at home we love him. We don’t look down on him. We don’t refer to him as having AIDS, we love him because he’s my bother and there is nothing wrong to be HIV positive.]

Jabu Ngumane: Ja, besiyo-disclosa [We went to disclose at a] disclosure and acceptance campaign and I went there, you know, when you’re strutting in the ukhe wabona nje after the show uhamba esitrandeni this guys come and say: “Nayi le outie le besikutshela ukuthi inegculaza.” [street, these guys started saying: “Here is the guy we said has AIDS.”] So why maybe they say that, is I’m the one who is bringing HIV/AIDS in the township or whatever, that is way maybe they try to hit me and kill me. Okwamanje ayikho into engikuyo [At the moment] I am not in a drug trial. Into engiyi sebenzisayo [What I’m using now is] I treat myself. Into engiyi sebenzisayo, yinto engigulagayo khona manje, [What I’m sick with, like right now] I got flu, I only take something for flu, I don’t go and take other things that I don’t know what they are going to do. {IsiZulu}

Mrs Ngumane: Esibhedlela bangitshela ukuthi ngingalinge ngimphe umuthi wesintu, ngingalinge ngimphe isiwasho, umuthi wabantu abakhonzayo, okay asimniki umuthi wesintu. {IsiZulu} [At the hospital they told me never to give him traditional medicine, I must never give him medicine from spiritual healers, we don’t give him those.]

Jabu Ngumane: I don’t have a support structure that I attend; my only support structure is here at home with my family. About my sex life, okay I got a partner she’s stay in Themba well she knows that I’m infected but she’s not infected. We met then but we are still doing the something that I know safe sex, save life and sometimes I’m abstaining, I got sometimes I usually stay for more than four to five months but she understand, ja she understand. I’ve got my reason that why I have to spend most time in sex than in love because if you are in love it does not mean you must have sex. My message is that abantu aba-infected keep on living, forget about death, yazini ukufa uNkulunkulu ukubekile, its going to stay there ukufa. {IsiZulu} [My message to the people who are infected is keep on living forget about death because death there is death it is natural], but what I would like is people who are HIV positive stop to infect and affect other people so the best message: safe sex, safe life.

Special Report - Reproductive Rights.

Promise Mthembu: As a young woman, I have HIV because I had no access to the information that could change my behavior. I had no control of my sexual life and could not insist on safer sex.

Leisl Gerntholtz: I think part of saying that HIV positive women shouldn’t get pregnant is this kind of patronising notion that women who are HIV positive will just go and get pregnant and have lots of HIV positive babies.

Promise Mthembu: It is us who don’t have access to femidoms and microbicides in order to have control our sex life. Why is this female condom so expensive?

Support group member: This is nothing new on how to use the female condom, the principles are the same, are the same as using the male condom. What you do, you have to look the expire date in the male condom and then there is the arrow where it show one where to break the pack, this is how you open it, after opening it you take it out, hold for me thank you. Then you shake it down, then the ring which is on the bottom you make a figure of eight or you make an eight then one should have a way and means on how to insert it, so now I’m going to show you how to insert it, I’m going to use my hands, you make the figure of eight or the eight then you insert it then you push it using the other fingers up until the top part remains on the pubic hair of the female and then during the procedure the female should help, so that the male is not getting outside the condom should help during the insertion to hold so that they are able to protect themselves.

Group member 2: The following week ndeza kwi-support group ne-boyfriend yam, seza sihamba sobabini. The next week, kengoku sisuka apha egroupini wathi kum, icebo kukuba masitshate. Uyavelana nam, akayekanga ukundithanda, njengoba ndipositive. So yenye yezinto ezindenza ndomelele. Noba u-positive, kubonisa uba ubomi kuwe abuphelanga xa u-positive. {IsiXhosa} [The following week I went to the support group with my boyfriend, we came together. The next week after we came to the support group, he said, the best thing is to get married, because he feels for me, he has not stop loving me, even now when I’m HIV positive, so these are one of the things that strengthens me, even if you are positive it shows that life doesn’t stop when you are positive.]

Leisl Gerntholz: I’m certain women who are HIV positive have the same reproductive rights and they have the same rights to have reproductive autonomy and the rights to make decisions about reproduction as women who are not HIV positive. Issue is not whether they have the right to bare children because they clearly do, it’s their rights around having access to information and ultimately their rights to having treatment.

Group member 2: Njengoba ndivile ukuba i-AZT iyanceda kakhulu, nam ndinawo umdla uba ndingaba nabo abatwana. Ngoba ndiyazi ukuba bazosinda ukuthi bawundle ubomi be-negative, so ngenxa ye-AZT ndinakho ukuthi ndibenabo abatwana xa ndifuna. {IsiXhosa} [As I heard that AZT help, me too I would like to have children also because they would be able to negative and enjoy life. They will be HIV negative because of AZT I want to have children.]

Group member 3: To use a male and a female condom at the same time, it’s a waste of condoms, because a female condom prevents pregnancy and STD including HIV/AIDS together with the male condom so one partner must use a condom not both partners.

Group member 4: Some people can think that a female condom is very strong, so maybe it differs from a male condom. Like we say one round one condom also to a female condom the same thing applies, a female condom even if is strong enough it should only be used once.

Group member 5: Most of the, I mean in nowadays since we are exposed to female condoms. There is a huge demand and which also shows that people are keen to use it.

Group member 6: The women are having more freedom they can have their own condom which they are sure that this is really something that is mine and maybe the is no one who can make a whole out of it or what, if he doesn’t want my partner to use it its either you just leave. I’m having a say now in my body.

Group member 1: Where I’m living there is a lot of informal settlement there is a lot of activity; we are surrounded by lot of mines there, so you even see the males coming to fetch the female condom, for their partners. So seemingly the female condom is accepted mostly by the both, by both parties unlike the males turn to say it makes me tight when I’m putting on the male condom. This one both parties are excepting it.

Group member 7: The Department of Health in Mpumalanga has bought the amount of female condoms. This female condom was given out to certain clinic and to the peer education project in Mpumalanga but now they are exhausted we do not have any female condoms presently available.

Leisl Gerntholz: HIV positive women and men who choose to be sterilised based on their status can do that no one can force anyone to be sterilised based on their status. The nurses and doctor should only be presenting that option as a choice as one of the range options.

Group member 8: Before males used to have an excuse saying that male condom or condoms are some of them are small in size, but now just having a mere look at the size at the female condom you could see every man can be accommodated in the female condom. So now I just want to see those male who’s got the big stuff now.

Leisl Gerntholz: There is presently as far as we know from the best of scientific knowledge an intervention strategy that is cheaper and effective and that is the provision of Nevirapine to pregnant women that is the way many, many babies lives can be saved and presently government is not implementing that strategy. We know that women, we make the right decision if they are given the right information, if the have appropriate counselling, if they know what the risk are of the baby, I don’t think any woman in the world knowingly will bring a child to the world were they know that child going to be sick and possible die at the very young age.

Mercy Makhalemele: You are watching Beat It! Imagine how great it would be if could just use a quick loop and know that we would be protected, but the money isn’t going to finding cheap and solution to prevent the spread of HIV.

Paddy Nhlapo: You see that’s where you and all of us come in. If have to keep the pressure up to the government and big pharmaceutical companies to do the right thing, you can’t just sit back and hope that alles sal reg kom, konke kuzolunga, ngo tla luka. Afrikaans, IsiZulu, Sesotho} [Everything wil be fine.] So now is on to our Support Group where we discussing sex and a positive person.

Support Group – Sex and a positive person

Adeline Mangcu: The thing is; is the way whole thing about infection about HIV/AIDS was introduced to us. First, I don’t want to lie, I actually felt filthy, so the only thing you can do, is don’t have sex.

Mercy Makhalemele: I didn’t see myself having a sexual relationship in my life ever, I thought well I’m not interested, but as times when of course, you know, things change, we learn, we teach each other, you meet people who have gone through sexual problems and traumas and how one was able to come out of that and one had to learn how to go about it and the most important thing was the fact that awubandi {IsiZulu} [you are not cold].

Adeline Mangcu: The public, the community, the neighbours, friends, people you live with have no idea that actually, I’m a human being who is supposed to have sex, it went around that actually I am spreading the HIV virus. I mean how could I go out into the entire country and say: “I’m living with HIV and go out of my way to kill someone”, I just couldn’t take it and is been happening going on and on, I don’t know whether they understand that sexual rights are human rights and I am a human, start there from human and then HIV, I don’t understand, maybe people who have been lucky enough I know girl who actually got married after she was diagnosed that she is HIV positive and came up and disclosed but for me is bad experience, I will buy myself a couple of dildos, is it the one I can wear around with me, when I’m shopping, and going through the airport it goes beep beep beep, I say okay fine, fine, yes oh yes, well you can strip search me now. Sex is about life, you know what HIV did? It actually destroyed one beautiful thing that you can enjoy without a lot, is actually the healing thing in anybody’s soul. HIV destroyed sex for me.

Faghmeda Miller: I will say today’s age and time you should treat anyone as being HIV positive. I been infected through my late husband that doesn’t mean I hate men, but I don’t think I will ever get married again and also I don’t feel like going through explaining to your partner that you have this disease and he must protect himself and all that. So I rather just be myself and stay alone and abstain from sex, okay I do also feel sometimes I wish I had a child, I wish this, I wish that sometimes you want to have sex, but you should control yourself that is how I feel.

Paddy Nhlapo: A young man that I was counselling right? This young man is somebody who has casual sex, positive person, meets this person in a bar they go home hop into bed there was nothing penetrative but they like had oral sex, ball of a good time leaving the morning, now the person with which this young man has spent the night discovers that this young man has HIV and start screaming about it and calling people and saying: “Ja this person did tell me that they were HIV positive and bla bla bla, and I also infected myself with this person.”

Busisiwe Maqungo: Awunode ubhalwe apha ebunzini, kuthiwe u-HIV positive. Nabani, nabani umuntu odibana naye, usenoba HIV positive. Kufuneka nawe uthathe i-responsibility, yokuba uzi protecte, you are going to play this game ngeyona ndlela e-safe kakhulu. {IsiXhosa} [It’s not written on your forehead that you are HIV positive. Anybody you meet could be HIV positive. Don’t just look at a person. You must take responsibility to protect yourself and know you’re going to play this game very safely.]

Marius Thomas: My condom is now part of my skin. Jy weet as ek nie, waar ook al ek gaan sal my condom saam met my wees want mens weet nooit wanneer en hoe; maar die belangrike ding was dat nou omdat ek met die virus lewe wil ek nie graag hê iemand anders moet deur die selfde goed gaan as ek nie. {Afrikaans} [Where ever I go, my condom is with me because you never know. The important thing is, now that I’m living with the virus, I don’t want other people to go through what I’ve gone through.]

Sindiswa Godwana: Mna emveni ndifumanise uba ndine-HIV, zange ndibenawo umdla we-sex, ndingayihoyanga ke tu. Inoba kwaqengqeleka inoba about two months. Kodwa emveni koko, ndazixelela uba bubomi. I-sex yenye yobomi, ubomi buyaqhubeka but ndisebenzisa i-condom. Qha, into endizixelele yona, xa ndinothi ndidibana ne-partner entsha, ndizixelela uba ndawuze ndiyixelele into yoba ndinjena, phambi kobana siqubheke nge-sex ndimxelele before. Ukuba akandamkeli, ndizobe ndizixelele ukuba ebengandithandi kakade. {IsiXhosa} [After I found out I’m HIV positive, I lost interest in sex. I didn’t think about it for about two months. But afterwards I told myself that there is still life, sex is part of life, so I started again but now I use condoms. Also, I told myself if I get a new partner I will disclose. I will disclose to him before we engage in sex. If he doesn’t accept me, I’ll know that he doesn’t love me.]

Paddy Nhlapo: It’s not necessary for me to go on telling every single person that I meet and want to have sex with or agree to have sex with that I’m positive. As Antoinette was saying, you know having casual sex I mean, you tell this person okay, just when you meet them and they run away or you tell them shortly to bed before you hop into bed and then he runs away or they run away, you know that kinda thing, people need to take responsibility as we’ve all said.

Adeline Mangcu: As long as you give me that ever ready I will be fine, I’m not very choosey.

Mercy Makhalemele: It’s Red Noose and Red Ribbon time again. Each week we give someone or a group who has disregarded the rights of HIV people the Noose and the Red Ribbon to someone who has done good work to someone on behalf of the positive community. Who gets the Noose this week?

Paddy Nhlapo: One practice that really should be abolished is research spending which mainly reflects the interest of rich people and man, when it comes to diseases of the poor, tuberculosis and yes HIV which does cause AIDS, pharmaceutical companies are just not prepared to put cash for cheap researchable accessibly solutions like Microbicides. Did you know only one new tuberculosis drug has been developed in the last 30 years and that was only in the last year or so. Government must influence research agendas in health, so those things like microbicides that would be cheap and accessibly are developed. So this week we would like to give the Noose to the idea that when it comes to health cash is king.

Mercy Makhalemele: Now for the Red Ribbon this week. We would like to recognise work of the AIDS Consortium in Gauteng, there is so much talk about network and coordination and so little about delivery and anyone who has actually been to an AIDS Consortium monthly meeting and seen so many reps from different organisations pulling into offices to get updates to what is happening on the ground. We realize the value of these meetings, recognitions of the quality work done by the AIDS Consortium keeping people of all sectors up dated a Red Ribbon to all of you guys.

Paddy Nhlapo: That’s the programme for this week we really appreciate hearing from you, so contact us with your news, your views and your comments at the numbers given on the screen below. Sizonibona {IsiZulu} [We’ll see you] next week. Tuesday at 18:05.

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