Women and "HIV”
- What Rights?

By Clair Walton, London, England

To what extent are we as individuals allowed our freedoms of thought and choice in our own affairs when labelled with a medical diagnosis? Living with a positive "HIV” test result is more complicated than most because of the element of "transmission”. Whether through sexual or reproductive means, it is deemed by many authorities and some members of society that the individual has a responsibility to prevent "transmission” to another. This is particularly acute when "HIV-diagnosed” women try to exercise any form of protection for themselves and for their children that might challenge the orthodoxy.

There are many challenges to the orthodox view on "HIV” and AIDS - existence of "HIV”, isolation, causation and transmission. Besides the questions that challenge the orthodox view, the concerns many women have to face are valid even within the "accepted” perspective - toxicity of the drugs, risks associated with caesarean operations, interference in the natural process of breastfeeding, as well as labelling and all its implications of a child with an "HIV-diagnosis”.

Those concerns are increasing with more and more women asking where they can get help to assist them in their decision making process. Furthermore, they want to know what they can do if they go against the medical orthodoxy.

Women are challenging, looking for help, and are forced underground because the professionals are not supporting them. Have these women’s concerns been lost with the lobby for access to drugs and "assistance” in not breastfeeding? Certainly the "support” organisations have been lacking in their response or support for the issues raised by many women.

The powerful orthodoxy that has emerged is causing problems for women who challenge. This is an orthodoxy that fails to recognise the short history of less than twenty years and consequently it is unable to obtain knowledge over a generation because the time hasn’t elapsed yet.

From the evidence of talking to professionals and those concerned with these issues in England, it seems many cases generally don’t reach the courts because there is a reliance on bullying or cajoling. Medical professionals are greatly concerned about how they can get those who won’t take the medications to take them, those who breastfeed to stop, and those (within certain "risk” groups) who haven’t tested to test. In addition, "support” organisations complicate matters by advancing cultural arguments for the right to continue breastfeeding and take a high moral stand on how they can help. These maybe convincing reasons for some mothers but for others it is not. Rather, they have a more fundamental concern for the toxicity of drugs and the interference in a natural process otherwise encouraged.

Two years ago a local authority social services in London thought it wise, at considerable expense, to take a couple, where the mother had a positive "HIV” test and was breastfeeding her child, through legal action to force a test on the child. When the High Court ruled in favour of social services, the couple went underground to avoid the child being tested against their will and the implications of that. The "HIV” organisations set up to support them were ineffective, and in some cases said nothing. One has to question their role – to whom are they accountable?

At the same time, in a neighbouring local authority area, a young girl in the care of her aunt was brutally subjected to degrading treatment, burnt by cigarettes and beaten, kept tied up and forced to sleep in the bath. She eventually died, and although social services were aware of the barbaric ordeal she lived through with her aunt the system failed her. When compared to the "HIV-testing” case, one wonders about the priorities these authorities set.

The paradox is that a woman who is pregnant is not just taking decisions about herself. The rights of the child are raised. In England, the unborn child has no rights, as was shown in a recent case where a man was not held responsible for the death following a car accident of a pregnant woman’s unborn child. However, it is a different matter once the child is born. The child is said to have rights. But what rights are we talking about when a baby is subjected to questionable medical interference to medical experimentation, especially when the parents act rationally making an informed decision for their child? In England, the courts are increasingly siding with proposed medical procedures, against loving and caring parents.

Faced with the consequences of medical intrusion against their wishes, where do they go? Who can help in fighting against those professionals who seek to impose their view? We need to distinguish between the organisations that side with the establishment and those that really support the interest of individuals within society. Further, we need to learn to equip ourselves with a broad range of information on any subject that affects our lives as deeply as being labelled "HIV-positive” does. This essentially includes having an awareness of any discourse and knowledge of our basic human rights.

For the time being, however, it seems that anonymity is the best protection. When a woman takes an "HIV” test and a positive result is recorded, she may unwittingly give up control over any subsequent children - a good reason, if she has the choice, not to take an "HIV” test. Or at least, not to have it recorded.