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The International Community of Women Living with HIV/AIDS (ICW)

The International Community of Women Living with HIV/AIDS (ICW) is the only international network of HIV - positive women and has 5000 member s worldwide. Our vision is a world where all HIV - positive women:

  • Have a respected and meaningful involvement at all political levels, local, national, regional, and international, where decisions that affect our lives are being made;
  • Have full access to care and treatment; and
  • Enjoy full rights, particularly sexual, reproductive, legal, financial and general health rights , i rrespective of our culture, age, religion, sexuality, social or economic status/class and race.

Here we feature the story of Sthemiso, an ICW member, whose experiences powerfully illustrate why the sexual and reproductive rights of HIV - positive women are a key focus of ICW’s advocacy work and communications. For more information about our work and for copies of our publications please seeour website or get in touch using this e-mail: .

My Story of Motherhood: Reproductive Rights and Wrongs

We all know that life circumstances change and feelings shift. Perhaps something that you felt certain about five years ago is not necessarily so certain now. Sthembiso* tells us the story of her daughter, born when she was only a girl. She describes the stigma of being the HIV - positive mother of a disabled child who she now knows is also HIV - positive. She explains why previously she did not want another baby. Today her life is very different and she longs to have one.

For me motherhood is a complex issue. I have an HIV - positive child who has another, completely separate disability. I feel guilty each time I talk directly about her. My daughter was born in 1993. In 1996 I had a stillborn child. In 1998 I had a termination of another pregnancy and was pushed into being sterilised. At the same time I was living with no hope for treatment, had an abusive partner, and was jobless with no real home of my own. At that point I would have said I absolutely did not want to have any more children.

When I went into labour , we were building a little mud house outside the main house. When I felt the pain and saw things coming out I told my mother but she insisted that I work even harder. I had to fetch and carry a 25-litre container of water from the tap at the main house. (That mud house is where my daughter and I ended up sleeping because my mother did not want the noise of the baby to disturb her.) I worked the whole day mixing the mud, fetching the water and cooking. According to my mother this was to help the labour process. Obviously I couldn’t complain – I had committed the worst sin ever by falling pregnant at 16 without being married. My parents were doing me a favour keeping me at home when they could have rightfully kicked me out. After 3 pm when the pain was unbearable my mother allowed me to have a bath and to take a taxi to the clinic – on my own. When I got there they shouted at me for arriving late.

After being examined they called an ambulance – I needed medical attention at the hospital. But the baby came before the ambulance. She was a girl and she did not cry – I was told she was too tired. Finally we were ferried to hospital where she was kept in the nursery for five days. I only learned nine months later that loss of oxygen at birth caused her disability. I do not want to blame my mother but there is a part of me that says if she had not made me work so hard, things would have turned out differently. Had she sent me to the clinic earlier my daughter would probably not be disabled. I would have felt better had she at least accompanied me to the clinic. I do not know why I am writing this. It is the first time I am actually acknowledging this disturbing reality of my life.

Changes and challenges

My life has changed now. My daughter is almost 15. She is in care after I realised it was the best option for her as her needs are becoming more complex the older she gets.

It was after coming to terms with my HIV diagnosis, meeting other women in similar situations, and beginning a new life, that the desire to have another child cropped up. Having another child (if I do have one) would give me the opportunity to enjoy being pregnant by choice and to be a mother in different circumstances. I think of my daughter , too; I am her only family. What will happen if I die? I would pass on peacefully if I knew that I was not leaving her alone no matter how long it took her sibling to grow enough to understand there is a sister who needs love and nurturing.

My desire for another child has thrown up many challenges. The first is to get a partner. I am in my 30s, have HIV, a disabled child, and I am a feminist. HIV helped me to discover myself as a woman and I am finding it really hard to find and keep relationships with men. I have explored in vitro fertilisation (IVF) as an option. It turns out that male partner participation in treatment is essential. One boyfriend agreed to take the treatment with me. However, he refused to go for a fertility test, arguing that he did not need to as he already has children. In the end he went after I negotiated and traded off a fair degree of my power in the relationship. The results showed that his sperm count was low and he needed fertility treatment for the IVF to be successful. He did not receive the news very well, and he blamed me for bringing it to his attention. A couple of months later the relationship was over.

The question is, do I wish to meet another man and tell him my story, beg him for his sperm and loose some power in the process? The answer is, I would rather not, but what choice do I have? Maybe I should try the sperm bank, but will they take me if I disclose my HIV status?

Pain and Joy

All those years ago when I was sterilised I felt as though I was being punished and judged. I did not want to have a child then. But I did not want to be sterilized either. Recently my doctor suggested that perhaps we could reverse the sterilisation. Two weeks ago I learned with shock that the sterilisation was irreversible. I am still dealing with this. I have not lost hope. I will continue to explore the options and the possibilities I have.

I draw strength and support from a woman living with HIV who is in a similar situation. We talk and cry over the dramas as they unfold. I always claim my case is the worst, but she tells me no, because she is married and hasn’t told her husband she was sterilised. If she had revealed this, her husband’s family would not have paid lobola (bride price) for her. She is worried about what will happen to her if she discovers her sterilisation cannot be reversed either, as this is her only solution.

As I live and grow with HIV, I see other women with HIV having healthy children. I feel joy and pain when I learn that someone has had a baby. I do not go anywhere near baby shops. I avoid places with infants.

I love my daughter very much, I love her gorgeous smiles, I enjoy the way she creatively uses her body to communicate her needs, wants and emotions with me using MAKATON (a communication technique she uses as she cannot speak). I enjoy the way she propels her wheelchair to dangerous places in the house to attract my attention, the way she is self-aware, how she will not take on another activity before you clean her hands, how she will behave when she sees another disabled child, how she is when I am with her alone or with her carers and teachers, how she learns and copies games from able children and imitates them using the abilities she has, and how she recognises anything said and sung in her home language Zulu although she has not spoken or lived in a community that speaks the language in years. I love the way she portrays my character and how our interests and behaviour are the same sometimes. I love reading her school reports. Dear daughter. I cannot begin to say how grateful I am that she’s almost fifteen. My daughter and I are very lucky. I know many children in her situation no not have access to what she has.

HIV has become less of a worry as far as my desires are concerned. I am on treatment and receive high quality care. All my medical professionals are supportive. My state of health is excellent. Unlike many women, I have access to information, services, resources and support. For me the most stigmatising thing was having a disabled child and having HIV. Now with support and love from other HIV - positive women, and professionals, I am surviving that double stigma. There is no way I could be brought down by the stigma of being HIV - positive and pregnant.

*Sthembiso’s name has been changed . Source : ICW News 34 -please link to