CJ grew up with her grandmother and says her “childhood was something very wonderful”. She dropped out of school when diagnosed HIV positive and, although she hasn’t changed as a person, “I have had to live a different life: a life of living positively”. She has found strength in her Christian faith, and benefits from supportive friends: “I am a very lucky person.”
CJ talks about ICWs work to put pressure on governments, and draws inspiration from its international status: “With an organisation like the ICW I think we still have a voice. Because it’s not just one person or one country, it’s… women united, fighting for the same common goal”.
She feels that discrimination has reduced as people have access to more accurate information. But more needs to be done to reduce ignorance and stigma surrounding HIV, and”to see people fulfilling their potential”.
I am 28. I was born in Windhoek but grew up in the north with my grandmother. My childhood was something very wonderful. I came to learn a lot of things: how to live with people from different backgrounds; how to respect people whether they are rich or poor.
I learned to care for other people, because in our community we love to support each other. It doesn’t matter whether we are blood related or not. We just learn to be there for one another. I have such wonderful memories – I wish you could see what is going on in my heart, now that you have brought up the things of my childhood.
I started school in the north and stayed until Grade 6. I was supposed to continue to Grade 7, but in 1994 I decided to go to Windhoek to start school there. When I was in Windhoek my mother told me that she couldn’t live with me, that I must go back to my grandmother in the north.
With that I went back and somebody found me a [new] place in school, but in the process I just dropped out, I don’t know why. I just didn’t want to continue. In 1995 I started school again, in Windhoek. I stayed with my Auntie [first]. In the same year I went to my father’s house, and ended up living with him until now….
A loving and supportive grandmother
For me it didn’t make a lot [of difference, not having a relationship with my mother] because my grandmother was like a mother to me. She was there for me 24 hours a day [face lights up]. When I was sick she was there for me. And she provided for me. My grandmother was not earning any money – we just made oat cakes and sold them, that was how she supported me. But I was quite satisfied and happy, because of the kind of love I received.
I was the only one who grew up with my grandmother, so I was very spoiled – I got everything. When other family members came, I had a tendency to tell them, ‘This is my house and I do what I want, you go to your house to do what you want.’ I was very young, they were family, but I was sort of trying to protect my own space….
Getting sick; being tested
I continued school up to Grade 12. I had to drop out of school because I was very sick. I was between hospital and school, hospital and school. In the beginning I didn’t know what was wrong with me – I just had a skin rash. One day I went to the hospital and the dermatologist just ordered me to go for an HIV test.
It was easy for me, because I was already of thinking of going to do a test by myself. I was given the day to get the result – it was a Monday, the 23rd of June. My class was in the afternoon, so I had the whole morning to go and get my result.
When I went there I wasn’t really nervous, I was just very calm. They asked me the same question they asked when I went for the test. I think they just tried to make me calm – you know they know the result, but I didn’t know what it was going be. Then they just told me… ‘it has reacted’.
Now, I didn’t know what that meant. So, I went back to the school’s physical science staff and found out that the result must be positive for it to react. I was given my answer. I just said ‘thank you’ and went out. I decided to go home. My mind was just a little confused. I was not angry… just a little bit confused. At that time I was about 25…
Strengthened through faith
[After the test] the very first person I told was the Lord. That’s the very first person I shared it with… In 2002, [not long before,] I remember going to the dam. It is a wonderful place, where fish are and the birds come in. I was just sitting on a rock – I think I was facing east.
And during that time I got something like a vision of myself: skinny, no hair, sick with AIDS. And in that vision I actually cried out, ‘Lord Jesus, help me’, and he came and picked me up. It didn’t make sense to me at the time. But when I found out that I was positive I realised that maybe this was how God was speaking to me. And I wasn’t afraid, because I saw Jesus come and pick me up…
‘I came to understand my value’
Since I tested positive] not much has changed in me. I learn to live with what I have and what I don’t have. From that time I have had to live a different life: a life of living positively; a life of looking after myself; a life where I have to educate myself about HIV and AIDS.
So my life is somehow changed, but not a lot. Even protecting myself from things like STDs, that is something I already did before I knew my status. My social life was almost the same as now. I had already made the decision to be celibate. I would have chosen to remain a virgin, but unfortunately I couldn’t, I had already had a sexual experience. But I chose at least the second time around to live on my own….
I am not [in a relationship]. My reason was I came to understand my value as a human being, and my value as a woman. I came to understand that whenever you sleep with a man it’s like you married that man. And with that in mind, how many guys do you think you can sleep with? It just doesn’t make sense, because every time you sleep with somebody you give part of your life to him or her.
To me that is like devaluing myself – putting my value down and putting the value of other people up. I decided ‘no’, I am going to wait. Although right now I am HIV positive, I have faith that I am going to live a normal life, I am going to have my own family, and I still continue to live this way.
Helping women to live positively
ICW only works with women – not all, but the majority of them are HIV positive. I think part of the reason why ICW is only working with women is because sometimes women are the ones who are being suppressed by their partners. When one of you is HIV positive you want to disclose, but you are afraid that the other person is going to harm you. You try to be quiet, you become afraid. And ICW helps people be able to speak about their status openly; be able to live their lives positively, with no fear.
You just bring people together – when you have many people from different backgrounds they all have different ideas. With that, we come up with ideas on how to help each other, how to deal with situations. When women in the community know they are HIV positive, they normally try to say ‘Let us use a condom’, but the husbands say ‘No, I don’t want to use a condom.’ That’s when we teach our people: ‘You have the right to say no to sex; you have the right to your own life – to enjoy your life in the way you want it.’ When you educate people like that they will understand.
Involving men and members of government
The ICW is working with all different organisations. Sometimes we do have one or two men who come to our meetings. Being a member [of ICW] is different, but when we work with another organisation and have a meeting or workshop, then there are maybe one, two or three men. When you educate these men they are going to send the message abroad to other men, because when you teach a person you teach a whole nation.
ICW is also working with the government. We sort of have a wonderful ground rule that we will try to bring our problems to them. Compared to just hearing me, or being in the newspaper or seeing something on TV, when they see us – real people who are infected coming to them with our issues, even asking them to help us with projects – then they do understand.
‘I came to know my rights’
In my young life I didn’t belong to any [social groups or movements]. I was more like an independent person, on my own, doing what I loved doing… [But now] the ICW means a lot to me. Through the ICW I came to know a lot of things, like my rights as a human being and as a person who’s living with HIV and AIDS. [I learnt] that I do have the same rights as somebody who’s not HIV positive to, for example, education, working opportunities, whatever other people are having. If it wasn’t for the ICW I probably wouldn’t have known all of this.
The ICW is not only based in Namibia – you find it in Africa and the Pacific, in Asia and in America and Europe too… And knowing that it’s not only Namibian women, has given me the voice to speak up. It’s given me a reason to move on and to reach out to other people.
‘We are like a super-power’
For example, in Namibia we have a wonderful government. It is providing us with treatment, we don’t have a problem. But we do have countries like Zambia and Zimbabwe where people don’t get ARVs. We have places like Botswana where they don’t give ARVs to foreign people.
But with the ICW we can at least come together, for example at a workshop or just a meeting. And when you take people from each country throughout the world, and we come together as women and we discuss and say ‘Look we still need to go somewhere, we still need to put pressure on the international community’ – we are like a super-power.
We still need to put pressure on governments. We still need to put more pressure on African leaders. Countries like Angola and Zimbabwe, they are rich but how do they use the money? There is a lot of corruption in our governments.
The people who are HIV positive are the poor people. The majority of these are women, young women and our small children. But with an organisation like the ICW I think we still have a voice. Because it’s not just one person or one country, it’s…women united, fighting for the same common goal.
The potential of the media
ICW is a new organisation in Namibia. I think they probably started last year or the year before, so there is still a lot more to happen. At the moment I don’t think they are [involved with the media], but they do involve the all the ministers in our government. [But] I believe very much there are a lot of things that the media can do. Number one, a lot of our people – maybe 99 percent – listen to the different radio stations in Namibia. And that is actually going to give us the power and the strength to reach them and to make a difference.
The second thing is those silent topics you don’t talk about…there are certain things that the media don’t discuss that have to do with HIV people, for example human rights… With the media on our side I think there’s a lot that the ICW is going to achieve regarding education, trying to help women especially. Because most of our women…I don’t think we will know our rights as people unless somebody comes to us and says ‘You have the right to say no to sex to your husband.’
‘Discrimination is about lack of information’
Back then, like in the old times, [discrimination] was really a big issue. In those days if you were HIV positive, especially if you were sick, the moment you tried to join other people, for example at the tavern or the shebeen, they would move away and leave you to sit on your own. People tried to call you names, like lesbian or gay or ‘whatever’ – just treat you very bad. But now people are no longer like that. For example, most of my friends are non-HIV people.
I think the whole issue of discrimination is about lack of information. In the beginning when we came to know about HIV, we had this idea that it’s transferable from one person to another… people didn’t give out the right information, that it is only transmitted through sex and blood…. There was not enough information regarding things like… will you be a friend of an HIV person who has a sore? Some people would say ‘I am not going to sit there because he’s got a sore’ – but this sore is not bleeding. Now with the amount of information we are getting, discrimination is become less and less.
My friends are very open people, or should I say very caring and supporting. I actually call myself a very lucky person. When I was very sick and having skin problems my friends would come and sit with me. They will come and talk with me, asking are you OK, do you want this, do you want that? Just imagine, somebody called me from Germany – calling me, who am I to be called? – it’s just the type of friends I have. They are so caring. They support me financially and emotionally, they are there for me.
The desire to empower, to see people fulfil their potential
One of my visions in life is to make sure that my generation will not become infected through me; that’s one of my goals. And the other one I have is a desire to empower woman through information. Because I believe when you educate women, you educate the nation. Without education a lot of our people still are in ignorance. It is because of absence of information and education up to this day that we hear 40 million people are HIV positive. And every single day, because of ignorance and lack of understanding, people are still being infected.
In the future I would like every government to start treating people equally; to see people fulfilling their potential. In today’s life our young people who are HIV positive… there isn’t much chance for them to go school or get a job. You have these companies that say ‘give me your blood sample’ and when they find out you are HIV positive they turn you down. And sometimes you are very talented; you have the capability to change people’s lives.
My message [to those who are still HIV negative] will be ‘Please, with all my heart, don’t let yourselves be infected.’ HIV is not something that you can be infected with today and tomorrow it’s gone, it is life-long. Not everybody’s going to be lucky to live the way we are. And not everybody is going to be able to take it the way we are taking it. Because this is tough, it’s a tough disease…
This interview has been specially edited for the web and cut down by more than half. Some re-ordering has taken place: square brackets indicate ‘inserted’ text for clarification; round brackets are translations / interpretations; and dots indicate cuts in the text. The primary aim throughout has been to remain true to the spirit of the interview, while losing questions, repetition, and confusing or overlapping sections. Extracts from these interviews also appear under the key topics; these extracts pull together relevant comments and in a few cases include sentences that have been re-ordered or cut from the edits.