Numerous countries and foundations are admirably desperate to do something to curb the spread of HIV/Aids. If a policy or a model law appears that has been produced by respected "expert" institutions, it is quite understandable that they will rush to make use of them. But what if those policies or laws, although well intentioned in principle, do not work in practice? This is exactly what is happening in the international response to HIV, where a crisis is developing which is increasingly eroding the rights of women. Public health policies and legislation are being introduced which are not actually rooted in women's experiences. As a consequence, their implementation is at huge cost to women, who in their role as primary unpaid carers of their sick relatives, have in fact formed the backbone of the Aids response in the most affected communities.
The 'feminization' of Aids
Dr Rashid Abdulai of the Kumasi Centre for Collaborative Research in Tropical Medicine, Ghana illustrates the public health dimension of this crisis with a case study:
Alice Welbourn is an international activist and campaigner on women's rights and HIV/Aids, and former international chair of the International Community of Women Living with HIV/AIDS (ICW).
"In an HIV sentinel site in Zabzugu, a small remote town in Northern Ghana, Memunatu is pregnant for a third time. She has been advised to take an HIV test. She apparently does not know much about the course and outcome of HIV as a disease. She is tested positive.
Apparently she got it from her husband who had taken tubers of yam to sell in Accra. None of her two children tested positive to the virus. She was advised to come to the hospital with the husband for counseling, which she did. The husband declined when advised to take the test. When they returned home, the woman was branded bad, prostitute, unchaste, and her family was branded as a witches' family. This marked the end of the marriage.
Five years later, as a result of poverty, poor sanitation, malnutrition, constant decline in immunity due to the infection, the woman gets sick very often. She was taken to a nearby village to see the native doctor for treatment. A year later, she died."
According to Dr Abdulai, this story is "the normal scenario for most societies in Africa." As a medical practitioner, he himself "would go in for a legislature that binds every pregnant woman to take an HIV test ... But the question is, after knowing the results what responsibility do health and state institutions have for the welfare of people in similar socio-economic situations like Memunatu? ... It means nothing taking an HIV test if the individual, society or state is not prepared to support HIV patients to live normal and healthy lives..."
Dr Abdulai's concerns are echoed by Human Rights Watch (HRW) in Zambia and by many members of the International Community of Women living with HIV and AIDS (ICW) across Africa, Asia and beyond. A December 2007 report by HRW, Hidden in the Mealie Meal: gender-based abuses and women's HIV treatment in Zambia states:
"Gender-specific barriers that impede Zambian women's ability to seek HIV information or start and continue using ART (HIV drugs) include: violence and the fear of violence by intimate partners, the fear of abandonment and divorce in an environment where women suffer insecure property rights, and property grabbing upon the death of a spouse. These abuses occur in the context of poverty and of a culture that condones male authority and control over women. The final result can be severe ... with dreadful impact on their health and their lives."
So testing a pregnant woman can carry many risks to her, her older children and any unborn child. But the impetus for ante-natal testing comes from a new drive to create an "Aids-free generation" promoted by Unicef, the WHO, and other UN agencies, with the backing of the Bush regime. Some UN officials, who fear being named, have expressed great concern about the continued perception of women "as vessels and vectors" rather than as thinking, caring responsible human beings, on whose healthy lives their children's futures best depend. This quick fix "tick-box approach" has seen qualitative aspects of health care for women - and their children - evaporate.
article forms part of our coverage of International Women's Day under the 50.50 initiative. Also on openDemocracy, in the blogs:
Samia Rahman, "Why Muslim women can have it all"
Abigail Fielding-Smith, "Citizenship is everything"
Also in openDemocracy on HIV/Aids policy and development:
Luisa Orza, "Thinking positive"
Ian Hodgson, "HIV/Aids: beyond stigma"
Patricia Daniel, "Africa and HIV/Aids: men at work"
Cathy Watson, "Uganda: HIV/Aids and the age factor"
Alex de Waal, "HIV/Aids: the next twenty-five years"
Alex de Waal, "The global Aids campaign: a generation's struggle"
Roger Tatoud, "Gendering the fight against Aids"
Tim France, "The United Nations and Aids: learning from failure"
Ian Hodgson, "The price of the ticket" Newly introduced legislation is making the situation worse. Further promoting this public health policy, another US government-led initiative is quietly promoting a "model Aids law" in francophone and lusophone Africa - and other countries with limited links to women's rights activism or to international human rights networks, and are therefore most easy to target. In Sierra Leone, HIV transmission from a woman to her unborn child has become a criminal offence. Here a woman can now face a fine or up to seven years jail - or both f0r that offence. Hardly great for her child's survival - or that of her older children - or indeed the woman herself.
The model law also promotes the idea that health workers should have the right to disclose a woman's HIV status to her husband six weeks after diagnosis. Such decrees violate human rights principles, including UNAIDS' own guidelines on testing and disclosure. There are clearly plans to roll out this law to other African countries. In December, Malawi announced plans to make testing of all pregnant women compulsory. Izeduwa Derex-Briggs, HIV/Aids specialist with the United Nations Population Fund (UNFPA), argued that if the law was passed it would infringe the rights of Malawian women: "Such a law would be discriminatory. Why should it target women and not men?"
A point of contrast here is with the treatment of circumcised men in similar countries. Although male circumcision is now known to protect men against HIV, despite recent reports of the huge risk of HIV transmission from newly circumcised males to their female partners, there are no plans afoot to make testing of men being circumcised compulsory. There is an imbalance both in public health policy and in legislation, which tips the scales heavily against women.
The crisis "at home"
And there lies the crux. This policy and law have their roots in US domestic policy for HIV, which is dealing with another Aids crisis. In some parts of the US, HIV prevalence is equivalent to parts of Africa. 82% of all women with HIV in the United States are Black and Latina women (pdf). Aids is now the leading cause of death for African-American women aged between 25 and 44. Here too, "voluntary" testing of pregnant women, like Memunatu in Ghana, has become the norm. But even though testing might not be compulsory yet, it does not have to be mandatory to be involuntary.
When the state of Michigan started "routine, opt-out HIV testing" for pregnant women, an American Civil Liberties Union study (pdf) examining its effects found that "fewer than half of the women felt very comfortable refusing testing, and one in five did not feel at all comfortable refusing HIV testing". Women who were unemployed, younger or with less prior contact with the healthcare system found it even harder to refuse the test. In Arkansas, which also has an opt-out testing program that doesn't require written consent - which is true for most of Africa and Asia - the study found that "16% of women tested did not even know that they had been tested for HIV." Rose Saxe of ACLU warned that without written consent, 'routine testing' will, in practice, quickly become 'mandatory' testing.
ACLU and others also know that women who are tested without consent are less likely to get the follow-up care that is critical to maintaining good health. Women who are tested because it is mandatory are less likely to be prepared for a positive diagnosis and seek follow-up care than those who choose to be tested. "Whilst the authorities should be commended for trying to increase the number of people tested for HIV, eliminating the only safeguards that guarantee that testing is voluntary and informed does little to ensure that people will receive the care they need" concludes the report.
As someone who myself tested positive for HIV when I was pregnant 16 years ago, when I had no idea that I might be since I felt fit and well, I offer my own experiences. Even though I - exceptionally - had excellent supportive care both from my partner and my physicians, to receive a diagnosis of this enormity when pregnant is quite devastating, and should be acceptable only as a last resort rather than as mainstream public health policy or law. Instead funds should be focused on promoting community-wide, genuinely voluntary testing, so that women - and men - can learn about their status before rather than after conception, and feel wholly supported if they test positive.
One way attitudes could change is for all government institutions around the world, including health ministries and parliaments, to promote the invaluable contribution of their own senior personnel who are already HIV positive to the ongoing work of government institutions. If they in turn - many of them heterosexual men - then felt supported to disclose their status publicly, the huge global gender bias which targets women for testing, test-related violence and rejection - and which then produces more Aids-related orphans - could begin to be redressed.
You may laugh, but it is no more preposterous than the idea of targeting women to be tested - and uncovering all kinds of secrets, lies and gender-based power imbalances in the process - when they are most psychologically, physically and materially vulnerable.
Even in the west, most people experience immense shock on diagnosis and still believe that this means their death is imminent. The liminality of pregnancy and giving birth are one of the key universal rites of passage which define a woman's life in most of the world. This is a time of deep emotion and intimacy, as a woman grows in touch with the unique wonders of creation unfolding inside her being. Yet global public health policy, promoted by the UN - and now legislation too, promoted by the United States - seem to target women at this intensely fragile time.
Women in several countries have also reported that, once diagnosed, they have been unknowingly, and forcibly sterilized, so that they never have the chance to become pregnant. And this despite the fact that, with the right drugs, there can be a less than 2% chance of the virus being passed to a baby. Indeed, in Britain, many positive women are giving birth to perfectly healthy babies.
Laws and policies to curb HIV shouldn't - and mustn't - damage HIV positive women's rights to choose when to have sex or not, nor to choose whether or not to have children. Nor should they damage their children's rights to have a healthy happy mother. After all, the best security for child survival is a healthy, educated and happy mother. We need to use effective humane means to create policies, laws and practices that work for individuals not against them, and uphold their human rights.
ICW, with the Center for the Study of Aids, Mary Robinson's Ethical Globalization Initiative, and the International Center for Research on Women, coordinated a ground-breaking "Parliamentarians for Women's Health" project in four African countries. Jennifer Gatsi, ICW's Namibia National Coordinator, facilitates joint regional workshops between parliamentarians and HIV positive women's representatives. "These women have been able to take their collective, politicised experiences to an audience which has the power to create legislative change" reports Gatsi.
Personally the project has hugely promoted the women's self esteem.. Framing their concerns as political issues, they have also been "taken seriously on the political level." A committed group of MPs have also benefited from the programme in terms of having their eyes opened to the reality of what it means for an entire community, especially the women in that community, to be affected by HIV and Aids, as well as other health issues. They are now ready to represent some of those issues in parliament: "The experience has made me promise myself: ...I must do something." - Honourable Ida Hoffman
It's not rocket science to introduce this kind of programme. It does need immense courage and determination for the positive women involved to overcome the stigma that they have faced in their own lives and to decide to embrace the horrors of their own experiences so that others don't have to go through what they did.
It is said you can tell the level of civilisation of a country by the state of its prisons. I believe you can also judge it by how it treats its women and children. What we have now is a very disturbing spread of judgmental, punitive laws and policies, concocted in board rooms by parliaments, civil servants and public health officers, most of them male, who assume more rights over what happens to women's bodies than we have ourselves. 2008 is the 60th anniversary of the UN Declaration of Human Rights. No-one wants an "Aids-free generation" more than we HIV-positive women ourselves. On the eve of International Women's Day this year, I dream that rather than the spread of HIV, or of more oppressive laws against women, things will change. I propose that we all start to take heed of, to listen to, learn from and act on the courage, wisdom and plain humanity of such women as Jennifer Gatsi and her colleagues. If we all acted on their visions, then policies and laws could be just and humane, treating them, their bodies - and their children - with the respect and dignity which is their right, rooted in the real world of their experiences. An Aids-free generation is possible, if only we all learn to listen to those who most want it for their children.