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 womens 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
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 hasnt elapsed yet.
From the evidence of talking to professionals and those concerned with
these issues in England, it seems many cases generally dont reach
the courts because there is a reliance on bullying or cajoling. Medical
professionals are greatly concerned about how they can get those who wont
take the medications to take them, those who breastfeed to stop, and those
(within certain "risk groups) who havent 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
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
womans 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
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
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.