The following extracts highlight some of the main issues relating to identity, culture and context, such as: men and masculinity; fertility; gender relations; positive relationships; religion; childhood; abuse; politics; resistance; coping; and support.
Many of the narrators describe moments of intense despair and hardship relating to their early experiences of diagnosis living with HIV. Many (but not all) then describe a journey of survival and hope supported by friends, family and others living with HIV, as well as access to essential services and treatments.
The diversity of the individual stories within the collection highlights the complex and holistic nature of the HIV epidemic, touching on many dimensions of an individual’s life as well as the social and cultural context that it permeates.
Culture is something dynamic
To me culture is something dynamic. We must start to see the dynamics. There is no culture which says women must be undermined, women must be beaten. There is no culture like that.
My culture, the African culture, the Xhosa culture, respects women. Women are seen as co-partners all the time but unfortunately along the line it has been destroyed by some men to advance their interests as men. It has come time to unwind the truth of culture itself.
You must have listened to a programme yesterday about lobola [bride price]; people are complaining lobola was part of our tradition. It is a dowry, I paid lobola; I was not paying money to buy my wife but I was expressing to her family a thank-you for moulding and shaping a woman like this one. The amount I paid is not her worth, but it was my human endeavour to say thank you to the families.
Patrick (male), member of Engender Health, South Africa
Handshake of a lifetime
Sometimes people treat me differently and in the beginning my family was very overprotective of me.
Once I was walking with a Muslim man in Cape Town. I started talking to him about HIV and asked him how he feels about people who are HIV positive. He said according to their beliefs someone is HIV positive when they have committed a ‘sin’, and that they stone such people to death. I said to him that it is not a sin to be HIV positive. He said he will never touch a person who is HIV positive.
As we walked on, I thanked him for the conversation and took his hand for a handshake. I said ‘Sir, you have just touched someone who is HIV positive.’ He went to pull his hand out of mine. I said “No sir, nothing will happen to you – you can greet me.” And you know what? He gave me a hug and said thank you.
Jo-Ann (female), member of TAC, South Africa
We need more men
The men in our community are too scared to talk about their HIV status. I only know of, say, three. Three in our community that are open about their status. And we need more men – we really need more men.
Gerald (male), member of TAC, South Africa
I have been unemployed. I felt bad because I couldn’t provide, as a man with a family, for my girlfriend and my child. I had to provide for them at the same time as looking after my mother. I had to make ends meet.
John (male), member of Khululeka, South Africa
A hard time getting food
I have never been employed in my life up to this stage. Not even as a maid. The only job I did was self-employed, selling my meat… I am really having a hard time when it comes to food. With those drugs you need to have food. That is why you always see me coming to a support group, to meetings, hoping to get meal maize. But no, I am really having a hard time with food.
Karolina (female), member of ICW, Namibia
I started seeking the churches that offer spiritual healing, because I knew that for me to overcome this I needed to have God or Jesus within me. I needed to pray.
I can’t tell you how many churches I went to that year – you would not believe it. I went to so many churches and the messages I was hearing put me off, because they were saying if you read in Revelations this disease is going to come and all those people have this disease, it is God punishing them. It made it even worse, because I started to believe that God was punishing me.
I went there to seek spiritual healing, but before I could even interact with anybody – the pastor or priest or whoever – the negative message meant I said to myself I am not even going to talk to anybody because they are going to point a finger at me – maybe chase me out of the church because they see me as sinner [laughs]…
Why should they judge me? Why should they judge me instead of supporting me, embracing me? I said it’s not worth going to a church when I know I am going to hear a negative message. I would rather pray by myself and seek a personal relationship with God and I have found that for me it works.
Jeni (female), member of ICW, Namibia
The church fights stigma and discrimination
The church has brought a change into my life and the church is trying to fight against stigma and discrimination. It also encourages you that you are still a human being. Jesus Christ loves you, and also God loves you.
Maria (female), member of Lironga Eparu, Namibia
Talking about sex
I tell my children to really protect themselves, especially when it comes to sex. I am not telling them not to have sexual intercourse; I tell them to use condoms. They listen to me.
One of them did come, one of the boys, to ask advice. I felt proud. I felt good because he does not want to make mistakes. I know that he wants to have sex but first he wants to get information.
Karolina (female), member of ICW, Namibia
If we were [HIV] negative, we would do it every day [claps hands and laughs] but we are limited. We use condoms, male condoms, but every time I get a sore because it’s rubber. So we tried female condoms, which were OK, but at the end we saw that it fell off and it has gone inside the vagina! So I don’t know how safe that is.
That is why I am looking forward to the microbicide development. If it comes and it works really well, I think it will be a life-saver for us, both male and female.
Female, member of ICW, Namibia