In Italy, like in many European countries, we rarely talk about HIV. If we talk about it, it is about what happens in “foreign countries”, like Africa, far away from us, in spite of the fact that within our borders over 148,000 people live with the virus and over a third are women. So here I want to talk about how HIV has affected me as an Italian woman, and also to look at the efforts of people living with HIV in Italy to create an environment which is culturally and politically more supportive.
I was diagnosed HIV positive in Italy in 1997, a few days before my thirtieth birthday. ‘Why me? Why Me?’: was the question that kept bouncing in my head. I found it terribly hard to make sense of what had happened. I was terrified and full of shame…It took me many months to speak to my closest friend. That is how strong the power of stigma was, and unfortunately still is for many women who get diagnosed today.
Internationally we very often speak of how gender inequalities and cultural gender norms make women vulnerable to HIV, but this is seldom spoken of in Europe. Personally I think it had a lot to do with how I became HIV positive in Italy. As a young woman I had to deal with a quite a lot of depression, emotional instability, and low self–esteem. Using drugs, hiding behind a ‘tough’ mask was what I used to protect myself and deal with my emotions. However I didn’t acquire HIV directly from using drugs, it was the social and cultural environment around me that highly enhanced my vulnerability. I was educated, I came from a very liberal family, my mother was a feminist. In theory I should have had all the information and skills to avoid such a tragedy.
However, growing up in a catholic country, with a very patriarchal structure meant that the women’s liberation movement had had only a superficial impact. Women in places of power are still rare today. Yes, my mother had fought for the right to contraception, abortion and divorce, but as young women, in the 80’s, our status was still very determined by having a partner and being subservient to male figures. The assumption was that we were ‘liberated’ and sexually available. However, as a young woman, getting condoms wasn’t easy. They were only available in chemists, and it was embarrassing to ask for them in front of many other people queueing up for their prescription. If you tried to initiate condoms with your partner you would find a lot of resistance, you would be judged as either a slut or a fun spoiler. As a young woman, you couldn’t win. We didn’t have any female-initiated prevention methods, and female condoms didn’t exist, or I had never even heard about them. I feel that things are not much better for young women today, who get sexualized from an even younger age, and live in a country were the sexual exploits with extremely young women of our ex prime minister took a very long time to cause his demise, and are still condoned by many people.
After my diagnosis I was never offered any social support or information on HIV. In Italy, social services are virtually non-existent and in times of a crisis the family is expected to be your main source of support. This obviously leaves a lot of people terribly isolated, as for many it is still really hard to discuss HIV within the family. For me it was impossible, as my mother had died and my father had advanced dementia. How did I survive? I had to leave… I escaped to London, where finally I started accessing a women’s group at Positively Women, now Positively UK. I became more involved with the organization and started working there especially with drug using women and women in prison. I also started doing more political work and joined the International Community of Women Living with HIV (ICW). In 2004, together with Carmen Tarrades and Fiona Pettitt who worked at ICW offices in London, we established our first UK positive women’s network, PozFem UK, which had the aim to skill up women living with HIV to be able to influence policy and the media in order to promote the rights of women living with HIV.
In 2005 I decided to go public about my HIV positive status: I felt that the personal was Political, with a capital P, and I thought that being open about living with HIV could make my advocacy work more effective and challenge more powerfully prejudices against women with HIV. I am painfully aware that openness is still impossible for many women who live with HIV who often have access to limited support and need to protect their loved ones from stigma and discrimination. I also started participating in more international conferences, to speak about PozFem and our success in enabling HIV positive women to move from isolation to involvement. One day, at the end of a presentation I was approached by Margherita Errico, who is now CEO of the Network Persone Sieropositive (NPS) in Italy. She congratulated me on my presentation, but also scolded me: ‘You ran away… But not all of us can…Things are still very hard, but we are getting organized.” Through Margehrita I started getting back in contact with other people with HIV in Italy. NPS has done a lot of work both to provide information to people living with HIV on treatment issues and their rights, as well as influencing policy. Last year we were able to organize several sessions at the International AIDS Conference in Rome on sexual and reproductive health and rights of women living with HIV. NPS, WECARe+ (Network of Women living with HIV in Europe and Central Asia) the Athena network came together to highlight good practice and discuss what still needs to change to ensure our SRHR are met world-wide. At one session Rosaria Iardino, one of the founders and leader of NPS, was able to denounce how positive women in Italy are still struggling to become parents and are even pushed into having abortions. NPS is working hard on those rights abuses, but there is still a long way to go. What are the challenges ahead? “The epidemic continues growing among women, 44,3% of all new diagnosis are among migrant women. We need new approaches to community work, which is culturally appropriate, in order to reach also those women who are most marginalized” states Margherita Errico. How this is going to happen in the economic meltdown of Southern Europe it is still unknown. It is definitely not a priority for the Italian government who also, at the international level, failed to fulfill its commitments to the Global Fund.
On the positive side the new developed integration of NPS with the global community of women-centred HIV activism means that they have taken part in the Bristol-Myers Squibb-funded SHE (Strong HIV positive Empowered) progamme, which has produced a self-help toolkit to provide peer support for women living with HIV in clinical settings. The toolkit was written by a collective of women living with HIV and other activists from the UK and provides a structure to facilitate group sessions on the many psycho-social issues women with HIV have to face: for example dealing with a diagnosis, starting and sustaining a relationship, having a good dialogue with the healthcare professionals and so on. Most notably, the toolkit has a section on understanding human rights, and using them to advocate for improvement in services and policies that affect women living with HIV.
The Italian website for the SHE was made available on line at the end of June and hopefully will provide a useful tool to strengthen the support needs and develop the capacity to advocate for human rights of women living with HIV in Italy today.
Italian version of this article here.
Tthis article was firstly published by Open Democracy as part of their special coverage of the International AIDS Conference 2012 AIDS Gender and Human Rights