Positive women human rights defenders

When the world has come to terms with the reality that HIV is not a morality issue, and that it can affect any one of us, it will be time to recognize the dangerous work of these women defneders of human rights.

Alice Welbourn
1 December 2010

We are racing past rolling fields of scattered snowfall, en route to Heathrow airport and Kenya for an international meeting to address the enormity of gender-based violence around the world and the huge impact that it has, both as a cause and as a consequence of HIV. Officials working on National Strategic Plans to combat HIV are gathering together with UN and civil society representatives from twenty countries. Here, as in other meetings in my work as an HIV positive activist over the years, it will be my privilege to meet and feel inspired by activists from many different corners of the globe. There are most certainly positive aspects to this work – to feel, once again, a connection with a global movement of justice, humanity, spirit and compassion. This year to mark the annual 16 days against gender violence, I want to introduce some of these positive women human rights defenders, many with their own violent stories to tell.

The Pacific Islands: Maura Mea and Maire Bopp. Maura is from Papua New Guinea. A former nurse, and a poet, she experienced gender violence at the hands of the health service in which she served. She was tested for HIV while pregnant without her permission. Her first baby was left to die by the health staff. Maura lost her second baby when he was given a live polio vaccine – which should never be given to anyone with a damaged immune system – soon after he was born. Then, pregnant with her third child, Maura was forced to have a termination, and was also sterilized, against her will. This is why we talk about institutional violence in relation to women and HIV. Maura now works for the Australian Government aid programme as their advocacy officer for the international “GIPA” principle – the greater involvement of people with HIV and AIDS for an effective response to the pandemic. Maire Bopp is also from the Pacific. Diagnosed with HIV as a young journalist, she realized very quickly that if HIV had happened to her, then many other of her friends must also be at risk. She resolved straight away to do something about this and set up the Pacific Islands AIDS Foundation, which works for the rights of people with HIV across the Pacific region.

Australia: Susan Paxton, a geologist by training, based in Melbourne. Once diagnosed, Susan decided to study for a PhD, based on developing a training programme entitled “Lifting the Burden of Secrecy”. This programme seeks to support many other positive women – and men – to live positively and openly with their status. Susan was instrumental in supporting the development of the Women’s Asia-Pacific Network , which consists of HIV-positive women from across the Asia-Pacific region. This year Susan launched a film and book, entitled “Diamonds” about many of the women in this network. Susan explains that diamonds are both the hardest substance in the world and the most glittering.

Cambodia: Mony Pen is a young positive woman who describes her life as “complicated”. Having experienced violent abuse as a young girl in a poor community, she resolved, once discovering her diagnosis aged 21, to make sure similar experiences didn’t happen to other women. Mony now works as the social mobilization and communication advisor with the Cambodian Community of Women living with HIV.

India: Kousalya Periasamy was widowed through AIDS-related illness, was thrown out of her marital home by her in-laws, then resolved to found the Positive Women’s Network of India and learn English. When I first met Kousalya, her English was very basic. It is now fluent and the size and activities of the network have mushroomed.

Namibia: Jennifer Gatsi Mallet and her colleagues continue to challenge the Namibian government over the coerced sterilization of many positive women there. The government continues to stall on the court case against them. The personal toll on Jenni and her colleagues shows: whenever with her, her phone is ringing or pinging constantly as women phone or text her for advice or support. Jenni too has lost a child to AIDS-related illness. Yet she wears her many griefs lightly, forever with a smile and a hug for all those around her.

Uganda: Lydia Mungherera is one of only two openly positive women medical doctors in the world. There are, of course, many female – and male – doctors who are positive. But only two women have, to date, openly spoken about their status in the HIV world. Lydia was left on the floor of the hospital where she worked – in another country – as her HIV-related sickness developed and she was expected to die. Thankfully for us, her siblings came and rescued her. Lydia has founded the award-winning Mama’s Club – a peer-based psycho-social support programme for young positive mothers in Uganda. This last week, the Mama’s Club has also just launched its fathers’ progamme, to promote positive involvement of men in parenting skills.

Nigeria: Rolake Odetoyinbo, another journalist, also decided to respond to her HIV diagnosis by doing something to support others. She runs her own weekly TV programme, which enables viewers to call in and ask any questions they may have about HIV. Rolake also used her presenter’s skills to wow the crowd in Vienna at the Human Rights March.

UK: Kate Thomson was one of the first women in the UK to be diagnosed with HIV, in the mid-1980s. She founded Positively Women in the UK, then shortly after that, the International Community of Women living with HIV. Kate now works at UNAIDS in Geneva, continuing to work quietly behind the scenes to promote the rights of people with HIV. Her most recent initiative was the creation of an organization of UN staff with HIV: UNPlus.

Silvia Petretti, an Italian living in the UK, visits women with HIV in prison in London – often their only source of support as they dare not disclose their HIV status to others around them. She has coordinated PozfemUK for the past three years, developing the skills and confidence of a nascent network of HIV-positive woman activists across the UK. Angelina Namiba, her colleague, has created a ground-breaking project entitled “From Pregnancy to Baby and Beyond”. This project, led jointly by women with HIV and London physicians together, trains both positive women and health staff to support women with HIV who have just been diagnosed while pregnant, or who are thinking of having children.

Switzerland: Sophie Dilmitis, in Geneva, coordinates the HIV response of the World YWCA. When her HIV diagnosis was first revealed to all through newspaper headlines at home in Zimbabwe. She went on to develop a training programme which she took into schools to educate young people there about her experiences

Spain: Marijo Vazquez, creator of Creacion Positiva, has recently edited a book documenting the lives of several other HIV-positive Spanish women. Marijo, Angelina and Silvia have also written on openDemocracy about their own experiences of living with HIV.

Bolivia: Violeta Ross is a social anthropologist and the daughter of a protestant pastor. She has challenged many in faith communities and beyond to question their own attitudes and judgments regarding people with HIV in their congregations.

USA: Scientist Dawn Averitt-Bridge started the Well Project, a huge on-line resource for positive women, accessed by users globally. Heidemarie Kremer, the other openly positive woman doctor, successfully challenged the US government earlier this year, who sought to deport her on the grounds of her HIV status. Meanwhile lawyer Heidi Nass, works as a peer counselor in a university medical centre, supporting newly diagnosed women to realize that there is indeed life beyond diagnosis.

This is just a whirlwind gallop across continents. There are many other women working behind the scenes who dare not be named for fear of the consequences. Women have died in the course of their work, such as Zambian Catherine Nyirenda, who was killed by her partner, or South African Gugu Dlamini who was stoned by her neighbours. This work is still dangerous. The threats of violence are real.

One day, when the world has truly come to terms with the reality that HIV is not a morality issue, and that it can affect any one of us, there will be a time to honour and celebrate the lives and work of all these women.

It feels rather ironic that I am travelling to this international meeting from a country without a domestic strategic plan. The numbers of us with HIV in the UK are set to rise to 100,000 by the end of 2011, and we will start this new year without any national HIV strategy at all. The current national strategy for HIV and sexual health in England expires at the end of 2010 and there are currently no plans to replace it, contravening the UK's commitment at the United Nations in 2001 (the 'UNGASS Declaration of Commitment on HIV/AIDS'). We need our government to take note. Now.

It is a moral issue that in England we will very soon have no HIV strategy; that we still have such high levels of stigma against us; that we still consider it acceptable to hold adults with HIV, and their children, in detention centres; that people are left for years awaiting Home Office decisions regarding their immigration status and are then picked up at night, deported within days with a mere handful of the medication they need, which is often not available in the countries to which they are made to return. This makes a mockery of DFID’s widely lauded commitment to “universal access” to HIV medication globally – yet there seems little interest from government circles in this immense disconnect between UK international policy and domestic government practices.

Gender violence is now widely recognized globally as a key cause of HIV. Yet in the UK, despite 25% of all women experiencing gender violence, there is no public discussion of these links. To address gender violence and HIV effectively, we need to challenge and overturn the homophobia which can often drive gay or bisexual men into hiding behind the mask of conformity of a heterosexual relationship. Men’s own fear of being labelled as “gay” also drives many to behave aggressively towards women as a means of establishing their virility. In the 21st century we need to have a far more comprehensive appreciation of what manhood means and doesn’t mean. Effective gender violence campaigns also need to recognize the importance of legalizing drugs in order to develop effective “harm reduction” programmes. Sex work too needs to be legalized, so that women can be supported to be safe and not exploited by punters – or police.

These are the global root issues which have given HIV such an immense grip in so many parts of the world. Deep prejudices need radical measures to root them out.

To read more of openDemocracy's coverage of HIV/Aids read AIDS 2010: Rights Here, Right Now






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