The recent Constitutional Court judgment safeguarding the privacy of people who are HIV positive may seem to be siding with the underdog, but in fact it simply reinforces stigma, writes Jonny Steinberg in Business Day.
Jonny Steinberg writes in Business Day:
SOMETHING disturbing happened in the Constitutional Court earlier this month. Something went wrong in the case of NM and others versus Charlene Smith, Patricia de Lille and another. That two judges dissented from the majority opinion is unremarkable in itself; disagreement about constitutional interpretation is what the court’s work is about. But the dispute here was not about the interpretation of the law. In her dissent, Kate O’Regan argued that the ruling her colleagues handed down was inconsistent with the facts of the case. That was utterly unprecedented. For the first time, the court dragged itself beyond the boundaries of its specialist role and fought over matters that are rightly settled in the lower courts. What happened?
In 1999, several HIV-positive people were recruited to participate in an antiretroviral drug trial at the University of Pretoria.
Soon after its start, some of the volunteers voiced serious concern about the trial. Parliamentarian De Lille became involved in their plight. The university appointed an independent commission of inquiry. At the inquiry, the complainants withdrew their allegations and the subsequent Strauss Report concluded in 2001 that the university had done no wrong.
Later that year, De Lille commissioned Smith to write her biography. Smith read De Lille’s copy of the Strauss Report. It named three of the HIV-positive women who had complained about the trial. What Smith did not know is that the women had consented to testify at the inquiry on condition that their names were not made public. That information was contained in an annexure of the Strauss Report, but the report had been distributed without its annexure.
When Smith’s biography of De Lille appeared, the names of the three HIV-positive women were in it. The doctor who ran the drug trial read the book and informed the three women. They sued for violation of privacy, dignity and psychological integrity. They said word of their HIV status had got out in the shack settlement in which they lived and they had suffered horrific prejudice.
Here is where the court split on matters of fact. O’Regan argued that Smith and De Lille could not reasonably have known that the women required their names to be concealed. If anyone was negligent, she argued, it was those who distributed the Strauss report without its annexure.
The university, a reputable source, had already published the women’s names. To insist that a journalist re-investigate the veracity of information published by reputable sources, O’Regan argued, “would result in unacceptable burdens being imposed on the dissemination of information and have a significantly deleterious effect on freedom of speechâ€ÂÂ.
The majority found the facts to be different. They argued that Smith and De Lille knew the three women wanted their names concealed and deliberately violated their privacy. Alternatively, they knew it was likely the women had not given their consent and published their names in reckless disregard of that likelihood.
The majority’s finding is bracing. Not even the three women’s counsel argued that Smith and De Lille intended to violate their clients’ privacy. Why was the court the only one to see intent?
One can only speculate. The fact that the applicants were among the most vulnerable South Africans imaginable probably played its part. They were poor women, lived in shacks and were HIV-positive. And they had been badly hurt. At a raw emotional level, the court must have struggled with the prospect of ruling against them.
The majority could have stuck to O’Regan’s version of the facts if it had argued that Smith had violated the applicants’ privacy because of negligence rather than intent.
But there was a problem here. Under the common law, violation of privacy because of negligence is not liable. To award damages on the grounds of negligence, the court would have had to develop the common law. For whatever reason, it did not want to go there. It was thus faced with an uncomfortable choice: either find against the three women or cajole the facts into singing the right tune. I think the court chose the latter.
That it did so is unfortunate and not only for the law. In its haste to side with the meek, I believe the court has inadvertently entrenched AIDS stigma.
One of the issues at the core of AIDS stigma is a feeling of self-loathing in those who suffer from it. To have internalised stigma is to persecute yourself incessantly. And you scan the world looking for signs that the persecution you feel within is mirrored from without, that everyone who looks at you sees inside your body and soul and feels disgust.
I am not suggesting that stigma exists only in the imaginations of the stigmatised. That is absurd. But the persecution felt by those in the depths of stigmatisation has a special occult quality to it. That is why across SA, thousands of people with AIDS believe they have been bewitched. AIDS and witchcraft are natural bedfellows: the coupling of sickness and a sense of persecution has always fuelled feelings of bewitchment.
The urgent task of SA’s leaders is to break the cycle of mythology and fear.
The Constitutional Court has done the opposite. Read the majority’s judgment and you will find that both its tone and its strange logic carry something of the spirit of bewitchment. What was at worst a negligent act of omission on the part of a journalist and a politician, the court transforms into menacing intent to do ill. And the power of Smith’s and De Lille’s intent also takes on an almost occult power.
The court tells that the three women suffered terrible prejudice as a result of their names being published: one attempted suicide, another withdrew into herself, the third lived in fear that her family would discover her status.
Perhaps it is true that all of this pain was caused by the publication of the names, but the court did not deem it necessary to show empirical, causal connections. Given the sense of the occult that shrouds AIDS, it should have. The tone of the judgment suggests that there is no need to show causal connections; that having your name revealed will, as a matter of fate, cause an orgy of loathing and violence to come down on your head.
If I arrived in SA for the first time and read the court’s judgment, I would not test for HIV. I would feel safer not knowing my status.
Something went wrong on Constitution Hill.
* Steinberg is a freelance journalist. This piece first appeared in Business Day on 24 April 2007.
