From Barcelona to Vienna: the delegates who do not know we exist

The city becomes a giant hotel, hundreds of activities happen simultaneously, thousands of people talk HIV, millions of euros are spent - and then, suddenly, everything vanishes again as if the conference had never happened

Marijo Vazquez
15 July 2010

The first International AIDS Conference (IAC) I attended was in Durban, South Africa in 2000. Its theme was “Break the Silence.” There I first became aware of the reality of what an IAC is like, and the sparse connections with any local communities: these huge events are often ephemeral illusions. Over 20,000 global delegates arrive in your city - yet few of them even know that you or your community exist. The whole city becomes a big hotel where hundreds of activities happen simultaneously, thousands of people talk HIV, millions of euros are spent - and then, suddenly, everything vanishes again as if it had never existed.

That IAC was considered a great opportunity for those few lucky activists, like myself, who could afford to attend. But even if it is in your own city, high fees, language difficulties and lack of real involvement make attendance nigh impossible for local women, including HIV-positive women.

These official conferences are largely dominated by academic papers in “abstract-driven” sessions and rarely offer spaces for less academic, less “evidence-based” and more participatory research approaches. So  issues of particular concern to women, such as human rights dimensions to public health, despite many reports of gender violence experienced after HIV-related health care, are often not adequately addressed in the official academic research tracks, since academic researchers rarely research issues specific to women as people rather than women as vectors and vessels.  Furthermore, few international conference organizers prioritise local women’s participation or concerns.

The Durban conference however introduced a qualitative difference in local women’s participation. For the first time, members of the International AIDS Society Women’s Caucus and the International Community of Women living with HIV and AIDS (ICW), to which I belong, cooperated, producing "Women at Durban". This facilitated the participation of local women in the Conference, presenting a free parallel event on themes such as international treatment access, gender-based vulnerabilities of women and girls to acquiring HIV, and prevention of parent to child transmission. Located near the Conference site, this enabled local women and international delegates to meet and learn from each other.

After this positive Durban experience, a group of women in Barcelona involved in the organization of the 2002 AIDS Barcelona Conference met with the “Women at Durban” organisers. Thus “Women at Barcelona/Mujeres Adelante” was created as the Spanish version of “Women at Durban”. It was conceived to act as a bridge connecting the official Barcelona Conference theme, which was “Knowledge and Commitment for Action” with the reality of the groups of local Spanish women who were working on a daily basis in self-help support groups.  We sought to connect the global conference delegates with the reality of these Spanish women’s lives. Oral presentations, debates, skills-building sessions, planning meetings produced four long, full days, attracting hundreds of women to our free parallel event. We included some of the hottest issues addressed at the official venue, such as treatment access for women globally; and other issues which the Conference programme overlooked, including our rights to have relationships and children. 

It’s eight years since the Barcelona 2002 Conference, yet I can still hear some of the Spanish women who participated in “Mujeres Adelante” comment on the impact that our event had in their lives and work:   Mujeres Adelante” ( “women moving forward” ) was a turning point in my work as an HIV activist. It was so inspiring to meet other positive women speaking so forcefully about these issues in an event that we had planned.”

During the preparation of Women at Barcelona /”Mujeres Adelante”, we realised how difficult it was to build from one Conference to the next. Limited funding forces most planning activities into the weeks immediately before the event. These include programme planning and dissemination, and innumerable detailed logistical arrangements, designed to accommodate thousands of visitors to the Zone, both from the main conference and from the general public, with over 50 sessions from around the world, in just over 4 days.  Previously it was challenging to leave a legacy for the participants to the next conference. Now however the organisers are harnessing modern technology to archive both the sessions and all our planning documents for future use. 

Two key outcomes of our discussions was ‘The Barcelona Bill of Rights’, and an open listserv, which identified some of the most relevant issues of HIV positive women and remains a strong advocacy tool, keeping us all connected on these issues globally.

This importance of bridging from one conference to the next, building on work already done and fully reporting on successes and challenges, to support the next organisers, are all key to this sharing process. So the local organisers of previous Women’s Networking Zones, from 2006 and 2008 especially have formed a key part of the advisory group for Vienna preparations.

This year, the Conference returns to Europe. I see old worries resurfacing: how to connect the academic conference to the daily realities of positive women in Central Europe, who are so very anxious about being identified. There are further key questions:  how can we use the Conference to address the issues that affect women in our region while we create links that will help us to find joint solutions? How can we make use of the Conference to contribute to creating a European community of women working around HIV? And what does it mean to be a community when we come from such different backgrounds?

It is not just living in the same region, nor sharing similar problems that makes us become a community. We are a community when we strive together to improve our individual and collective lives. One thing I would like to see from our Vienna work is that we have succeeded in defining our sense of what we mean by ‘being a community’, jointly analyzing and looking for solutions adjusted to the diversity we live in, focusing on our commonalities rather than our differences, mobilizing our own resources and find shared solutions to shared problems.

The dream of embracing women’s real experiences and placing them at the core of these conferences, which we shared at “Mujeres Adelante” was very ambitious. We still have much to do to consolidate our ongoing work to get a better understanding of the realities of HIV positive women in Europe: to establish better region-wide communication channels,  and to strengthen our joint ability to have a stronger impact on the way women’s issues - and in particular the issues faced by women with HIV - are addressed in Europe.

Women in Vienna will be Women moving Forward!






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