Memorandum submitted by the International
Community of Women Living with HIV/AIDS (ICW)
The International Community of Women living
with HIV/AIDS (ICW) is the only global network run by and for
HIV positive women and girls. ICW's Vision is a world where all
HIV positive women:
(1)
have respected and meaningful involvement at all
political levels, local, national, regional and international,
where decisions that effect our lives are being made;
(3)
enjoy full rights, particularly sexual, reproductive,
legal, financial, and general health rights;
— irrespective of our culture,
age, religion, sexuality, social or economic status/class and
race.
ICW has an international board of trustees,
and members on all continents.
Our members have a variety of concerns about
the issue of AIDS orphans.
A number of our members 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.
They may also fear that the stigma they suffer as positive women
will be extended to their 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 themselves) for passing HIV to their children.
"I always felt guilty knowing that I infected
the baby". (Participant in ICW research)
Most women only find out about their status
when they are pregnant and are often not given full information
about reducing transmission to their children. They may also find
themselves 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 don't think she is infected". (Participant in ICW research)
Even if they know the potential risks associated
with breastfeeding their children, they may fear that not to do
so will provoke comment and suspicion amongst their neighbours.
Other concerns relate to survival. How can HIV
positive women deal with their own health problems as well as
look after their children and cope with the social and material
manifestations of discrimination they 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 don't 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 sell their bodies for sex. They also have
to cope with their own ill-health on top of all the child 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.
Elizabeth's 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 children's 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.
March 2004
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