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LET’S GET TALKING:
Voices from around the world

The World AIDS Day (WAD) theme for 2007 is “Understanding Through Communication”. Programmes and projects all over the world are encouraging and enabling enhanced communication at all levels from grassroots to government.

The intention of the WAD theme is to highlight the importance of using open communication to break down the silence around HIV, and to get people talking about HIV in order to increase their own understanding and the knowledge of those around them. This year’s theme also builds on the “you me us” theme used in WAD 2006 as it is a call to action for us all to work together, encouraging everyone to use open communication to help stop the spread of HIV and to prevent stigma and discrimination.

Speaking Freely
Jeni - leaving stigma behind
Jeni has lived with HIV for 15 years. She found out her status after her daughter became ill and tested positive at 3 months of age. After researching the disease on the internet, Jeni started a support group for women in Windhoek: “I could see the frustration they were feeling; they didn’t have anybody to talk to”. She is now project officer with ICW (International Community of Women living with HIV and AIDS), working to mobilise membership and improve communication and to encourage policy development in women’s sexual health. She told Panos Speaking Freely project her own personal story.

Jeni’s story
“First of all I want to tell you that I am a 48-year-old who looks 16. I’ve been living with HIV for 15 years now and I am living very, very positively. I had to get married; I had a child with my first husband. But this marriage was very, very physically and emotionally abusive. He beat me up and he called me very bad names which started to make me... I started not to believe in myself anymore. But in the end I had to get out because it was too much, with the help of my mother and my sister.

Long-distance relationship and diagnosis
Afterwards I met my second husband, whom I am still with now. We met in 1988 it was a long-distance relationship. I think this is the time he got infected...... When I went to the clinic I was told by the nurse that it is a sexually transmitted disease, but I didn’t realise, I thought it was itching in my vagina. So after that I phoned him; I wanted him to explain himself — but you know men! As usual, they always say something — maybe you are using detergent to clean yourself! So I believed him. When the child was born it was healthy, but after three months it started to get sick. I didn’t think anything of it, I just thought it’s normal for children to get sick when young. So one time, I think after six times going to the hospital, she was admitted. They asked me if they could take an HIV test for the child; I said sure — because I was very confident that it was not HIV. The day the result came, I was in the hospital with my child and it was visiting time and the nurse just came in and told me — it was the 1990s — that your child is HIV positive. Just like that, in front of everybody, without even having pre-counselling to prepare me or anything.

Lack of counselling or information; family support
That same day I was told by the nurse I went straight away and phoned my partner to tell him that this, our child, is HIV positive. They also asked me to go for a test and I was telling him that you must go as well so we can know — are we both infected? I waited two weeks [for my result] and again they told me without any counselling. They just said you are positive, you must start planning if you have got other children, because you are going to die — and that was the message.

Staying together and supporting each other
When I came to Namibia, then my partner was so happy that I still accepted him, even though I knew that he is the one who gave me the virus. The reason why I accepted him was because after I started reading, I knew that if we separated, because I was still young, I am still going to need a partner — because I am also a human being. Then maybe I am going to infect somebody else so it’s better stay with him and support each other.
And I lived for 12 years without taking any medication, because my CD4 count was as high as a normal person and I was not sick from that time we started living together and I was in another country where nobody knew me [or] my status. I started to gain weight and to live positively and forget that I am HIV positive. If I was still [in Zimbabwe] maybe I would have died early, because of the stigma and the discrimination.

The comfort of someone to talk to
I started a psycho-social support group in Windhoek, because I was working for the women’s organisation and I could see the frustration they were feeling; they didn’t have anybody to talk to. ...I came across ICW ( International Community of Women living with HIV and AIDS) and fortunately enough ICW were advertising a post for Namibia. So I said I am going to join and I am also going to apply — because my passion is to help woman who are living with HIV and AIDS.

Honest talk challenges stigma
There’s information, but most is in print form and most people are not readers. The messages on the radio are being given by people who are not positive, so how can you attract a woman who is positive to listen to someone who does not know exactly what it means to live with HIV? They should put on people living with HIV, get them to come and talk on one-hour slots, talk about their experience.
I think this will also reduce stigma and violence, because I am sure that if men start hearing women on the radio talking about their experiences, they will start to understand why they need not to be violent against women. We need our leaders to go to the communities and hold meetings, not rely on the radio only, [but] go into the communities whatever language is being spoken and use that language. This is not happening at the moment. And if some of the leaders know that they are living with the virus, they must come out and say I am living with the virus and I am living positively.

Positive messages in the media are important
I think at the moment the media is coming up with stories that they get from other sources; they should invite people living with HIV [to speak]. Just put in something in the Namibian [newspaper] and say we are inviting people living with HIV to come to us or call us, so that we can put their stories in the paper, so that people can hear from people living with the virus.
I think [the media is] important as long as they bring positive rather than negative messages.

A future with everybody talking openly about HIV
What would I want to see in the future? What I want to see is people living with HIV, NGOs, CBOs, the Church, the government — everybody talking openly about HIV and AIDS — so there’s no stigma anymore, no discriminating and HIV/AIDS is taken as another chronic illness like diabetes, high blood pressure, whatever, and people are free to talk about it like cancer say. I would like to see everybody talking freely about HIV, because without us being activist about it, the stigma is going to go on...My personal vision is to see myself being a grandmother [laughs]. Yes, and
still strong. +

Speaking Freely is a report by Panos, www.panos.org.uk

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