OUR REALITIES OUR RIGHTS

Gender Aids Forum (GAF) together with International Community of Women Living With HIV/AIDS (I.C.W) hosted a summit in Durban, KZN Province in South Africa. The theme of the summit was “Confronting Marginalization Together in the Context of HIV/AIDs” One of the marginalized groups that the summit was going to discuss was women living with HIV/AIDS in South Africa.

The organisers felt that women living with HIV/AIDS should be involved during the planning process. Their role was to develop the discussion paper that was used during the summit using their stories and experiences and which forms a part of this article. The paper was adopted and approved by women living with HIV/AIDS during the women’s caucus which was held a day before the summit. This resulted with the launch of I.C.W. – RSA.

Gender Aids Forum (GAF) together with International Community of Women Living With HIV/AIDS (I.C.W) hosted a summit in Durban, KZN Province in South Africa. The theme of the summit was

BACKGROUND TO OUR REALITIES OUR RIGHTS.

Gender Aids Forum (GAF) together with International Community of Women Living With HIV/AIDS (I.C.W) hosted a summit in Durban, KZN Province in South Africa. The theme of the summit was “Confronting Marginalization Together in the Context of HIV/AIDs” One of the marginalized group that the summit was going to discuss was women living with HIV/AIDS in South Africa. The organisers felt that women living with HIV/AIDS should be involved during the planning process. Their role was to develop the discussion paper that will be used during the summit using their stories and experiences.

6 women around KwaZulu-Natal? were identified, approached and they agreed to take part. A one day workshop was held. During this workshop they first identified themselves, how do they see themselves, what does it mean to live with HIV/AIDS in S.A. Then they looked at names they are given or used by the society when referring to them. They discussed how are they or feel being marginalized and by who. They were asked to write their personal stories as individuals. All these contributions were compiled into one paper which was a draft. A teleconference took place to edit and finalize everything about the paper (see below). It was adopted and approved by women living with HIV/AIDS during the women’s caucus which was held a day before the summit. This resulted with the launch of I.C.W. – RSA.

REALITIES & RIGHTS PAPER

We are women living with HIV and AIDS but are so many other things as well.

We are breadwinners, home-makers, activists, mothers, daughters, counsellors, lesbians, community members, leaders, sexual beings, fighters and survivors. We are doctors, domestic workers, accountants, un-employed. We are white, black, Christian, Muslim. Because of these realities some of us are more marginalised than others.

We are NOT victims, an acronym PWA, statistics, vectors, subjects, cases, clients, target groups, beneficiaries. We need to be seen as more than “reproductive machines”.

We are all unique. As women living with HIV we experience many of the same things but we also experience living with HIV and AIDS differently. The lives of rural and urban women are not the same – working women and unemployed women face many different challenges.

Often our own response to HIV and AIDS, and the expectations placed on women by society, echos our tradition role as women. We are seen as only care-givers, to our partners, children and family– we are expected to always put the needs of others before ourselves. This is not good for us – for our health and well-being - it means that not only are we fighting a virus but we are also challenging the system which sees the needs of our children and our partners as more important than our needs as women.

As women are often the first to know or the first to TELL about our HIV status.

We all find out our HIV status in a different way. No matter how prepared we are through counselling, or thinking “something is wrong” the diagnosis is a sickening shock … Here are a few of our stories from the last few years about how we found out our HIV status – most of us without any counselling at all despite this being a recognised right for over 15 years.

"Four years ago, at 33 my life seemed charmed. I was about to be married, I was happy with my academic achievements and the job that I was doing. I was also happy to watch my son growing up. Little did I know that there was a lion at the door – just waiting to bring me down, tear my flesh into pieces and drink my blood. Three weeks before our wedding day, I was admitted in hospital for a lower abdominal pain. I informed the doctor that I was also not happy with the profuse sweating at night. Without offering me a pre-test counselling, he recommended that I must have an HIV test. I nearly had a heart attack when he came back with the result and informed me that I was HIV positive."


"I learned about my HIV status after one of my ex-boyfriends died. He was diagnosed positive there after he committed suicide. We were already not in love by the time he was diagnosed and died.

The doctor came back the following morning with my results, he explained to me that he ran a lot of tests (TB, HIV, anemia and he has good and bad news, I just looked at him, he started off by explaining that PCP pneumonia is a disease that normally affects and kills people with AIDS, my head started spinning, he also told me that the good news is that medicine is so advanced and everything can be treated to some extent. “Do I have AIDS as well” was the first thing I said when I opened my mouth, he said you are HIV+ but advancing to AIDS. He started explaining how they determine whether you have AIDS or you are HIV+, told me about the viral loads and CD4 counts. I stayed in the ICU for 4 longest days of my life, and stayed in the hospital for 9 days."

"Going to the doctor, AIDS was the last thing on my mind I just knew I might be reacting to something ( insect bite, allergy of some kind), but when I listened to the doctors endless questions I started to get worried, and I asked him, why do you keep on asking me this questions, you seem to be implying that I have got AIDS. That is when he told me that there is a possibility that I might be HIV positive and I must discuss with my husband about going for a test. I discussed this with my husband and he was reluctant to go for test, so I went back to the doctor alone - without pre-test counselling the blood was taken and I had to wait for two long weeks, hoping, praying, wishing that it is not so, but the evidence was there in front of me, I could see the symptoms in my husband, somehow I knew what those results would be."

These are painful stories – and we know that every women has her own painful story to tell.

We are often “diagnosed” through our children being sick and being tested. This is often not a decision that we have made – and due to lack of information we are not aware of the implications of our child being tested.

We are often blamed for bringing HIV into the marriage or home, or for infecting our children. There are perceptions in society that see women as responsible for HIV – this is because most of the statistics in the media are of women. It is also because women often die quicker than their partners – not because we are necessarily the first to be infected but because we have less access to health care as women and we are often the last to go for treatment.

We are the best judge of if, and when, we should disclose our HIV status to our partners and our families.

We know that there are often negative consequences to disclosing our HIV status. We remember the life and death of Gugu Dlamini and of many other women who are nameless - who have been killed or abused by partners, husbands, families when they disclosed. Only we understand the implications disclosure will have on our lives and only we have to live with these consequences. It should be our decision and not forced upon us.

We have experienced changes in our relationships because of HIV – many times this has been negative.

"After marriage I fell ill. I went to the doctor and I was diagnosed. I told my husband, he was shocked and angry. From then we were separated."

Some of us have, and continue to experience, support from our partner – whether he is living with HIV or is HIV negative. As a couple we have had to work hard to deal with HIV in our relationship and get to the point of acceptance.

We experience stigma and discrimination when our HIV status is known

"It was very difficult to disclose my HIV status to my family. After a while I started telling people in my family and my friends. At first they did not accept me for who I was. They could not even uses a spoon that I used. But now they have accepted it."

We also know that once our HIV status is known we may be denied acceptance, love, friendship, housing, security, access to treatment, insurance, medical aid, … The consequences of disclosure must be weighed up carefully ..

As women living with HIV we have many fears

We fear death, being sick, attack from the community, not being accepted, the future for our children, not being able to look after ourselves

"I go to bed at night feeling fine, waking up at 2.00am with struggling coughs and stomach cramps. Battling to fall asleep again for the rest of the night. I constantly wake up coughing between short dreams and nightmares of the work I have to do tomorrow. I know I have to wake up at 5 am – just two hours away, and wonder if I will be able to. But I have to. How else do I get the money for medication?"

As women we have many challenges and problems – not all our problems, whether health related or emotional, are due to our HIV status.

Our HIV status has often been an excuse to deny us treatment for other illnesses and health problems that we may have. We may have problems because of our different realities – being unemployed, a lesbian, a sex worker, a wife, a mother that are not related to our HIV status. BUT we know that our stress and worries, whatever there cause do impact on our health – on our immune systems and that we need to deal with our stress in order to remain healthy.


As women with HIV and AIDS we have health needs

We need treatment for opportunistic infections, we need access to anti-retroviral therapy, we need counselling services, we need access to pap-smears, we need treatment that has been tested on and developed for women.

Whilst a few of us are on treatment – many of us are not. This distinction is often made on the basis of economic status – whether we are poor or not, whether we are employed or not

"It is very hard for a positive woman to access services if she also lives in poverty, because not only does poverty weaken her body, but her mind and soul as well. For instance, I remember when I was still unemployed, facing family opposition and attacks, emotional and sexual abuse by the partner who was also the father of my child. It seemed as if the world was closing down on me. I had to depend on him for the food on my table, the child and my medical attention. I felt so trapped. I couldn’t think beyond this situation-instead I was giving myself stupid-good reasons to stick to him-anyway he was footing the bill, where else was I ‘supposed’ to look. Life was bad-very bad. My self-esteem was crushed. Little did I know this was just a ladder to take me up."

For those of us who are luck enough to access treatment, we often have to make lifestyle changes

"I disclosed my status at head quarters on August 26th, 2002, started taking my tablets on August 30th, 2002. I have adjusted my life drastically, from eating well to taking my medication religiously, I am getting my life back that was slowly slipping through my fingers; there is a lot of tablets to take, but what the hell."

We have struggled to come to terms with our HIV status and are learning the hard lessons of how to live with HIV and AIDS

We are the voices of few women who have lived with HIV and are constantly learning to deal with HIV. We have been able to do this through support of other women living with HIV, family, friends…. We know that there are many women who have different experiences, who for many reasons have been silenced. We want to support other women to reach acceptance but to keep fighting for our rights as women living with HIV.
 
When something happens in your life and you do not have control over, you begin to do some introspection and find out what your purpose in life is, I did just that. It has been a fulfilling spiritual journey that I had to make to discover who the real me is and what makes me tick, I have become a stronger person. Yes it was difficult, I went though the emotions of grief, and have come to terms with my status.

"I have been able to recapture my dreams and go on with my life, it is not easy but most of the time it is up to us to make positive decisions in our lives.
SOME TIMES IT IS OKAY TO BE SELFISH AND PUT YOURSELF FIRST !!!!!!!!"

Our rights …

We have the right to be seen for who we are and not just as women living with HIV and AIDS, which trivialises our lives.

We have the right to make our own choices – about disclosure, relationships, pregnancy. Our choices should be made by having the knowledge of the full range of options open to us. We need access to good, non-judgemental, counselling to support us in decision making should we wish.

We have the right to be seen as sexual beings, the right to sexual pleasure, and the right to decide when and how we express our sexuality. We have the right to access women controlled prevention methods that will make us and our partners safer.

We have the right to make our own decisions about reproduction and have our decisions accepted – whether we choose not to have children, choose to have children, choose to terminate our pregnancy. We also have the right to determine the right time for us to have children.

We have the right to safety, not to live in fear of rape, sexual abuse and domestic violence.

We have the right to treatment that is appropriate for women. We have the right to regular pap smears.

We assert our rights to be seen as a critical and vital part of the solution. To do this we must be given the space to fully and actively participate in policy at all levels. Our experiences and insights must be taken seriously – to ensure that responses to HIV and AIDS are relevant, effective and meet our needs. Our full participation requires commitment – on the part of organisations, institutions, ourselves. Whilst many of us have the skills to participate meaningfully, some of us need to be empowered.

In conclusion …

We want to stand together as women living with HIV – in solidarity and advocate for our rights. We stand in solidarity with men living with HIV – and fight many of the same battles – for treatment, for acceptance, for dignity. But because we are women, we also fight different battles ..

We stand in solidarity with women in South Africa – and fight many of the same battles – for an end to violence, gender in-equality. But because we are women living with HIV and AIDS, we also fight different battles ..

We stand in solidarity with people who are marginalised, do not have a place in society, whose voices are not heard.

There is a need for women to come together, determine our own agenda and act in solidarity. We need to make our voices and experiences heard – not just as a token – but to ensure that our experiences inform policy and programme that will improve our lives and the lives of our families.

This paper has been written by Ann, Bongi, Pono, Rose, Thokozani and Thula. It is the voices of a group of women living with HIV in KwaZulu? Natal – telling our stories, the realities of women living with HIV and the hardships we have faced. It also focuses on the fact that in there is life after an HIV and AIDS diagnosis.

We have told our stories to highlight our experiences so that we can begin to act to make our lives and the lives of other women living with HIV and AIDS.