HIV and the Media

One of our greatest struggle as people living with HIV is how the media represents us. Most times we are either victims or threats. Those limited and distorted views of HIV fuel stigma and discrimination.

Because of this PozFem UK – our national positive women network- has put a lot of effort in preparing us to deal with the media. We have had several trainings that focused on public speaking, delivering key messages and engaging with the media. In one of our last meetings we talked a lot about how we could be more proactive and more visible. One of our dreams is to have a group interview in which we could tell our stories,  and also speak about of how we have developed into a group of activists. We really would like to highlight how the struggle for PLHIV to be accepted as equal and valued members of our communities, is part of a larger battle for equity, equality, and human rights.

With World AIDS Day coming on the First of December we are getting quite a few requests to be interviewed, but I have still failed to seduce a journalist in this idea of a group interview. Anyhow, I have received  some requests for individual interviews and I disseminated them among PozFem members.

Last week I put one of PozFem  coordinators, L, in contact with a female journalist – a freelancer- who initially seemed really sympathetic. I gave L our guidelines on how to carry on interviews safely and effectively and I encouraged her to go ahead with it,  but to be cautious, and really think through what she wanted to put across. On Friday she called me really distressed because the journalist had somehow convinced her to give her a picture of her and her partner and now wanted to sell the story with the picture to The Mirror! L was really distressed, she regretted having given her picture and she was sure it wasn’t her wish for that kind of tabloid to manipulate her story. She was particularly worried because  she had recently moved house as a consequence  of AIDS related hate crime, and she was really frighten of this happening again and of the consequences on her children and family. I called the journalist and somehow I managed to talk her out of it. L was really upset since she really wanted her story to be out, she was determined to challenge the myths and stereotypes around this virus,  so she was really disappointed when it proved impossible.

To win peoples minds and hearts so that they feel able to show support and solidarity to those of us who live with HIV it is crucial to engage  with the mainstream media, however this is a real challenge, because we need to also protect ourselves and those we love. What can be done? How can we do it?

Women in Europe Vienna 2010 and Beyond

On the last week-end of October I was back in Vienna to participate to a meeting among HIV+ women in Europe. Most countries were represented including some ex-USSR and Central Asia places (it is very very bad that I don’t remember the name of all those places…I know), Russia, Ukraine, Lithuania, Poland, Albania, Armenia, Portugal, Spain, Italy, UK, Germany were represented,  and possibly a few more I can not recall right now.

So it was again a room full of women with HIV from all different parts of Europe, many languages, many experiences…but also many similarities.

One of the aims of the meeting was to start getting organized so that we can increase women’s visibility and influence at next International AIDS conference in Vienna in July 2010. We also discussed at length to identify key issues to  highlight in July.

On the first day we had an overview of the different situations in different countries, and each woman made a 10 minutes presentation about what is going on an the work that they are doing there.

Needless to say the reports from Eastern Europe were quite chilling. The women from Russia were among the youngest in our group, mainly in their early twenties, but nevertheless, you could see really motivated activists. Russia has one of the fastest growing and largest HIV epidemics in Europe. The official numbers from the government are  low, few hundred thousands, however WHO estimates there are over 1.000.000 people living with HIV and 38% of those are women. The women at our meeting highlighted that even if heterosexual transmission and intravenous drug use are the main routes of transmission , shockingly, some women also get infected in hospitals, because of lack of universal precautions. They also talked about the  immense lack of resources,  especially for women in prison, who don’t have absolutely any access neither to prevention or treatment.

Stigma and discrimination are rampant in Russia, and among the general population there is still  the false perception that HIV only affects drug users and prostitutes. If the women are drug users and want to access HIV treatment they need to register as drug users and this puts them at risk to lose custody of their children. Therefore women often, get really sick and die, because trying to access medication could lead to being separated from their children.

Something that was really shocking for me is what has been happening in Albania. I know that it is one of the poorest country in the EU, but it is also really close to Italy, just a few miles across the water. I couldn’t believe the story one woman told. A mother of 4 children, 3 of them HIV+. They all got diagnosed after her husband  (who had never disclosed to her) died of AIDS in 2004. Two of the children were also really sick, and nearly died because they couldn’t get treatment. I just can not believe that this was happening a few miles from Italy in 2004. This woman fought like a lioness for her and her children rights to treatment, and for once this story has an happy ending and they got their meds in the end and survived. She is now one of the heads of the movement for the rights of PLHIV in Albania.

We had about 10 hours of sharing, it was very very emotional, but also inspiring, it was amazing to learn about the resilience, courage, strength and focus of all of those women.

Some of the main outcomes of the meeting were:

• Setting up a formal network of women living with HIV in Europe and Central Asia, we are hoping to raise funds to register it in Germany. Several women from the meeting stepped up to be on a interim board of directors.

• We drafted a ‘reporting card’ which we want to use to highlight key issues and problematic areas for women in their European countries.

• We started working collecting information among young women (up to 18 years old) in the different European countries.

• We discussed and gave our inputs for a booklet on the 10 reasons why criminal transmission of HIV hurts women.

• We started organizing around setting up a Women Networking Zone in the Global Village – the area of the conference which is open to everybody (also people who can not afford the conference fee)

• My colleague SS – who also works for PW, diagnosed in prison only a few years ago, and has now evolved in a committed activist-  was offered to collaborate in the writing  of a plenary session for Vienna 2010 about PLHIV in prison.

Of course this is a very poor summary of the rich discussion which went on, but I hope it can give an idea of what amazing meeting it was.

This meeting wouldn’t have been possible without the tireless work of Alice Welbourn and Armandine Bollinger from the Salamander Trust, Tyler Crone from Athena Network and  also without the help and warm welcome of our Vienna hosts  Sabine and Wiltrut.

A full report of the meeting is available on the Salamander Trust website here:

http://www.salamandertrust.net/index.php/page/WomenInEurope&CentralAsia/

Inspiring

Last week at the  Treatment Advocacy training organized by Ibase that I am attending we had a very special speaker: Vuyiseka Dubula, a South African woman who is now the General Secretary of TAC (Treatment Action Campaign).

Vuyiseka spoke of her journey from being diagnosed really young in Khayelitsha, a very poor area of Cape Town, and how joining TAC and becoming a treatment activist changed her life. She has had a baby in 2006 who is HIV negative and she is now part of the leadership of TAC, having started as a volunteer and a receptionist. You can learn more about her and other HIV positive heroes here.

Three key points from her long speech were:

1) To develop support and recognition as and advocacy group it is essential to have a campaign with clear objectives

2) A successful campaigning organization needs to have a strong grassroots foundation. It needs to provide, education, skills and support in the community. Even if the organization disappears or is exiled, the work at the grassroots level will stay and grow. This was something TAC learned from ANC (African National Congress), during the struggle against apartheid.

3) Ultimately our goal is to have en equitable health system. We want justice. We are starting by fighting for HIV medication, but it is a much larger struggle. The competition between AIDS services and primary health services is not a real issue. We are developing a better and more just health system by advocating for HIV treatment. It is all part of a larger struggle for justice and affordable and accessible health for all.

Vuyiseka will be talking on ‘Debunking Denialism an the Fight for Treatment’ at Amnesty International in London on the 11th of November at 7 pm. For more information check Amnesty International.