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The International Community of Women Living with HIV/AIDS (ICW)
HIV POSITIVE WOMEN/GIRLS and ORPHANS
Many of our members are deeply stressed by the issue of AIDS orphans. Many are widowed with children. Positive women often do not disclose their status to their children for fear of distressing or frightening them, or losing their confidence. We may also fear that the stigma we face as positive women will be extended to our children.
I find it easy to speak in forums, to international meetings and political leaders about living with HIV. However, I found it very hard to speak to my own children in fact it is one of the hardest things I have ever had to do (ICW representative)
Women often face blame from family members (or even ourselves) for passing HIV to our children.
I always felt guilty knowing that I infected the baby (Participant in ICW research)
Many of us only found out about our status when we were pregnant and were often not given full information about reducing transmission to our children. We also find ourselves caught between the pressure from health workers not to have children and family pressures to have children.
My husband paid Lobola and he must have a child (Participant in ICW research)
The nurses advised me not to have any children again. I gave birth two years later but my husband became ill and died of HIV/AIDS in the same year. The nurses shouted at me why I did not listen to their advice. I had her because I wanted a child in my life [] the child is healthy and I dont think she is infected. (Participant in ICW research)
Even if we know the potential risks associated with breastfeeding children, we may fear that not to do so will provoke comment and suspicion amongst our neighbours.
Other concerns relate to survival. How can HIV positive women deal with our own health problems as well as look after our children and cope with the social and material manifestations of discrimination we face as positive women?
My husband died in 1992. Life is hard because nobody is looking after me with the children. I am facing problems getting drugs, because I am always on and off sick. I need food and I am unemployed. I dont have a place of my own. I am only using one room with three children. (Participant in ICW research)
Younger women members are sometimes orphans AND HIV positive, through their own birth, through child rape or through having to exchange sex for support. They also have to cope with their own ill-health on top of all the sibling care and household management work they have to do. There is a real risk that they may have to sacrifice long-term health for short-term survival by selling sex.
Elizabeths parents died leaving her with siblings to look after. There was no other way to find money. I started to have sex with anyone who would give me money. I knew all about AIDS [] I had no choice. I had to feed the family and that time I was 18 years old.
For many young women, poverty becomes so extreme that there is no alternative but for them to live on the streets, where they are exposed to yet more danger and abuse.
Many of our members have developed strategies to ensure they and their children can cope. For example, some of our members are involved in training on how to make wills. This is to ensure that their property gets passed to their children on their deaths and is not taken by relatives or other members of the community. Others have created memory books together with their children, filled with family stories and photos, to give their children a lasting idea of their parents and a pride in their personal history.
Our members have developed extraordinary strategies that help them, their children and their communities not only to cope with the impact of HIV but to thrive. However lack of appropriate care, treatment, and support, lack of gender equity and lack of visibility or voice means that HIV positive women and young girls are often unable to look after children whether they are their own, siblings, or other family members. Even when children only lose one parent, family breakdown is an all too real possibility.
ICW calls for the following:
global access to care, treatment and support, for women and girls, as well as for men and boys. This would mean families could stay united and parents could remain productive. Children would no longer lose their mothers and fathers or sisters and brothers, and become destitute through AIDS.
gender equity. This would mean, for instance, that the mothers of orphans are ensured the right to hold on to their children and to their house and land, on the death of the childrens father. Orphan girls should also be enabled to continue with their schooling, on a flexible basis, so that they do not lose out and become unemployable by being withdrawn from school to look after their sick relatives.
a full role of HIV positive women and girls in all decisions that affect our lives. This would allow the insights, experiences and courage of all women and orphans, especially those who are also HIV positive, and doing their best to look after others, to be heard, respected and supported by their communities, and wider society.
Contact address ICW
International Community of Women Living with HIV/AIDS (ICW) Unit 6, Building 1, Canonbury Business Centre, Canonbury Yard, 190a New North Road, London, N1 7BJ, United Kingdom Tel: +44 (0) 20 7704 0606, Fax: +44 (0) 20 7704 8070, Email: HYPERLINK "mailto:info@icw.org"info@icw.org, URL: www.icw.org
International Development Committee Evidence Session on AIDS orphans. UK Parliament, 2004.
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