"More than just a pound of flesh"?

It is time to move beyond the 'objective' evidence base to rights and justice for women with HIV. Will the International AIDS Conference in Vienna next week make a difference?
Alice Welbourn
15 July 2010

Next week the biennial International AIDS Conference comes to Europe again, this time in Vienna. Entitled “Rights here, right now”, it will enable us to turn the world’s spotlight on what is happening with HIV and women in Europe.

Although there are more women with HIV in Europe than ever, scant attention is paid to this by anyone. In W Europe, 29% of all new HIV diagnoses are through heterosexual transmission; in Central Europe the figure is 53%. And 20% of the 400-500 HIV positive babies born annually in St. Petersburg are abandoned for fear of gender-based violence. The global crisis of women and HIV remains enormous. Yet women’s rights in relation to HIV are still ignored by many at UN level and by most governments also. The recently launched UN Plan on Women’s Health  has immediately been criticised for lacking a women’s rights component. Meanwhile, there is lengthy UK press coverage of Barbara Harris, who is promoting sterilisation of women drug users, women with HIV in Africa and poor women in Haiti. We have much to ask of this conference as we seek to right all these wrongs against women.

Why is it so difficult to place women’s rights on the agendas of the UN and  policy makers? Firstly, as Helena Kennedy clearly articulated, laws made by men just don’t work for women and do not begin to do justice to women’s rights. For instance, a custodial sentence can have an even harsher effect on the children of a woman sent to gaol than on those of a man. Families are far more likely to split up if a mother is imprisoned, with lasting and devastating effects on both the woman and her children. Yet laws rarely recognise this.  

Secondly, as Harvard Professor Sofia Gruskin explains, public health policies, whilst supposedly gender neutral, instead may mask a whole range of different qualitative issues which, when subjected to the human rights lens are often found to be badly wanting.  For instance, it is not enough just to count numbers of men and women who receive HIV-medication and then announce that more women than men are receiving this, as WHO’s HIV Department does. Indeed, it is breath-taking that WHO calls women “slightly advantaged” in this respect, when so many also face the attendant trauma of an HIV diagnosis during pregnancy, with all that this implies. Hidden behind this are the facts that it is almost entirely only women of reproductive age who are receiving these drugs through programmes to prevent “vertical” transmission of HIV through childbirth. Moreover, these figures do not reflect the quality of these services, which often lead to women experiencing violence from health centre staff or from their families – or both. Yet because there is, to date, little "formal" documentation of these issues, this information, though widespread and consistent, is dismissed as “anecdotal” because it isn’t yet in the academic literature, so does not form part of the evidence base.

Thirdly, and leading on from this, research agendas for HIV are largely defined, led and funded by organisations in the US and W Europe. These are mainly health-based agendas, designed to increase access of people with HIV to Western health services. However, as with the old adage about statistics, so with the evidence-base: the results you get are defined by the information you feed in. If the questions are not defined by women with HIV, if women with HIV are neither party to what research gets funded or to the ways in which  research is conducted, small wonder that most of the evidence base is actually entirely missing the point about the reality of positive women’s lives. Researchers and health staff may think that increasing positive women’s access to western health services is identical to improving their quality of life – but this is rarely so. As I have explained elsewhere, if health centres merely treat women as vectors of disease and as vessels for producing new babies, not only are the women – but our children also – going to suffer the consequences. Yet no health service, government or Western donor funding these services has, to my knowledge, yet accepted accountability for the gender violence perpetrated directly or indirectly against women – and thereby their children – in the name of these public health policies. Despite their pronouncements that such public health policies are promoted in the name of the Convention on the Rights of the Child, it will be interesting to see what will happen if children who have experienced the many negative effects of these policies on their own families one day claim compensation from their governments – just as the “stolen generation” of Australia have now rightly done.

At the recent Washington “Women Deliver” maternal health conference, the Gates Foundation announced new large funds to address women’s maternal health. This is great news in part, but the role of HIV in relation to maternal health and mortality was barely addressed at “Women Deliver”, despite recent reports that the largest cause of maternal mortality, in Southern Africa at least, is HIV.  The difficulty with all these funding strategies and related policies is that they still view women just as bio-medical beings rather than in our entirety as people who are equal but different to men.  Focusing on women’s bio-medical health is of course a good thing globally, hard enough though that is to achieve. But focusing on this alone is the “illusion of inclusion”: there is still a huge gap between sex-disaggregated approaches and gender-disaggregated approaches in the world of science, clinical research, policy formulation and practice.

So there are many deep questions at stake in Vienna around women’s rights. Vienna only has one openly positive woman, despite being one of the world’s most cultured cities. It also hosted the UN World Conference on Human Rights in 1993, when women's rights were first recognised as being human rights. As Charlotte Bunch, founder of the Center for Women’s Global Leadership, explains:

“Women were primarily seen as part of the social and economic work of the UN, and women’s rights were only rarely addressed in the human rights arena before the 1990s. The change in this perception came most forcefully at the UN World Conference on Human Rights in Vienna in 1993.  With the cold war over and the issue of rape in war gaining media coverage in Bosnia, women seized the opportunity to demand attention to women’s rights as human rights.  They organized across the North-South divide …. to ensure that the Vienna Declaration and Programme of Action included a strong affirmation of the rights of women as universal human rights, and in particular for the recognition that all forms of violence against women are a violation of human rights"

The Conference led to the appointment of a UN Special Rapporteur on Violence Against Women in 1994, who challenged governments to outlaw this. Moreover, gender integration has since been incorporated into human rights treaties. The issue of sexual rights has also been addressed, through the Vienna, Cairo and Beijing World Conference documents.  So it is fitting that we come back to Vienna now for this conference entitled “Rights Here, Right Now.”

However, with the firm hold of the “objective” evidence base discourse on HIV, how realistic is it that an international AIDS conference can be open to such debates? Sadly, as Columbia Professor Ida Susser also argues, we hope for much but still fear not. Six scientific tracks drive the main conference programme, all resolutely committed to showcasing presentations which adhere to the “formal evidence base”, rather than to a human rights agenda. Thus, for reasons explained above, we are likely once more to experience a conference which feels as if it is two parallel tracks of a railway line, with the train and all its passengers which depend on these tracks, hurtling without any connecting points, into a bleak future. The track lines on which we run seem destined never to relate to one another – and the train is destined for violent derailment for women in particular, rather than gentle future travels for all..  

What can be done to encourage these two lines – “science” and the relentless rhetoric of the formally constructed “objective” evidence base on the one hand – and the reality of women’s lives in their messy, holistic, wholesome rich entireties on the other – to link to one another, to connect and to recognise their equal and complementary roles? Without an evidence base at all, we would indeed be lost in a quagmire of uncertainties, and would have nothing on which to defend our belief in Darwinian evolution, for instance, or our defence of harm reduction programmes. A certain taxonomical classification of the world around us is, therefore useful – a creation of some sense of order out of random chaos. At the same time, however, we in the West especially have become slaves to such taxonomies, believing them to have an objective existence of their own, rather than recognising that an evidence base is only as good as the questions researched by those who have created it. Scientists, donors and policy-makers alike are over-committed to a belief in the objective neutrality of scientific research, instead of encouraging us all constantly to question our assumptions about the political dimensions to what we reify and deify as “science”.

This is where the human rights agenda comes in because this does offer us a way forward, in that doctors and scientists might just listen to lawyers (ie fellow professionals) when they traditionally find it difficult to listen to lay people - especially their clients. This may sound harsh – and thankfully there are a goodly minority of serious exceptions to this rule. Yet the traditional male hierarchies of medicine, the law and the UN run deep in all our societies, and courageous are those individual (female) clients of either profession who dare to question those whose services they seek. 

There is also the good news that the International AIDS Conferences also have a parallel, free “Global Village” where different “Networking Zones” have the freedom to explore these and many other complex social, economic, political and psychological issues, liberated from the more narrowly defined confines of the conference “proper”. In our Women’s Networking Zone, there will be 4 and a half packed days of over 50 sessions, full of lively debate, sharing of experiences, film, workshops and stories, which will enable women from around the world, sex workers, drug users, positive women, lesbians, married women, widows and young women – and a whole mixture of yet more “categories” – or at least those who can afford to come – to share and celebrate our own lived experiences of what works for us, rather than approaches pre- and pro-scribed for us by others. One early session brings  together academics and women’s rights activists, to explore the issue discussed here. Its working title is “More than just a pound of flesh? – Beyond the Evidence Base:  Rights and Justice for Women”.  Although Portia won’t be with us herself, we hope that her wise words of caution to the court in Venice, that not a drop of blood should be spilt in the extraction of a pound of flesh, will be heeded by the conference delegates of Vienna also. Portia was a wise woman indeed. There are many of her offspring around the world. We just need to remember to listen to them all.




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