|LAST UPDATE: Wednesday, 1 July, 1998 15:27 GMT S U M M A R Y S E S S I O N S ...all the news, as it happens|
Summary of Tuesday, 30 June, 1998
The following is a report from the Community track Rapporteurs. We are from Zambia, Germany, Uganda, Nicaragua, Thailand and the United States. Our job has been to travel through the conference and gather information and impressions of the community tracks threaded throughout this conference. During the first few days of the conference the community rapporteur team posted key outcomes and bullet points on the Internet. But we realized we cannot summarize the complexity of whats happening with bullet points and outcomes. Its like the instructions on the container of AZT; the pills come just in the tin with no counseling, context or support.
The conference is full of complexities. There has been joy, and conflict, and rage, and growth. If we summarize it all in just a few bullet points, we lose the life of the people, all the differences of a culture; the spirit of the conference. So instead we tell stories; we gather impressions to define an experience.
Bridging the Gap.
Maybe the title "Bridging the Gap" has helped us to identify the gap. Between researchers and community people, for example, who hold the key to each other but who seem worlds apart but who are often, in fact, the same people. The community has been meeting to iron out their differences but scientists and people living with HIV/AIDS (PWA) could be speaking more together and comparing notes together. It sometimes seems science and community participants are, in certain cases, not talking with each other, but at each other. And there is willingness on the part of the community to speak with scientists and share with them. What about the gap between community and institutions? There have been rich meetings between organisations representing People living with HIV/AIDS and AIDS Service Organisations here at the conference. Sharing can, however, have many different forms; why havent many decision-makers attended the Skills Building workshops or the community symposia? These sessions address the realities of problems and attempt to find practical solutions.
People who are so very different are working together to create change. In the storytelling symposium, PWA were telling their stories and it made one man from Germany think about how gay men, women, and injection drug users, people whose cultures are worlds apart, have worked together for a common objective as PWA. We must go beyond the gap of cultural differences and work together in a global perspective and a global solidarity to achieve common goals.
Are women included in clinical trials? Hardly. In some countries women with HIV do not have the right to choose pregnancy; they are forced to get abortions. As a gay man with HIV, pregnancy is not supposed to be the German mans issue but he doesnt care. We may be different but we have to fight together for our rights because, as this man says, the next one might be me.
The community is working very hard to bridge its gaps. Possibly because the conference theme is Bridging the Gap it really has made it clear how very wide the gap is. Someone said it is more like a brick that both sides are trying to drill through to find each other. This is a very painful thing but also a very positive thing, because after you are able to identify and define a problem, you can then work on a solution. Perhaps the conference has not been perfect for some members of the community but this is the first time that the institution of the conference has begun to change. Change, especially institutional change is sometimes agonizingly slow and changing a culture is painful, even when it is good change. From the Vancouver conference we learned to include more Skills Building workshops, more overlap in session topics, more explanation of basic science and the importance of making more opportunities for community members to participate and to speak. This conference has gone even further to try and integrate the community into what has historically been a scientific conference. Can you imagine another setting in which the actual people who are affected play a major role in leadership and participation? Perhaps this conference marks the continuing of a change, and is not an end in itself. We are hopeful that the Durban 2000 conference can build on whats working here.
For many in the community, this conference has been difficult. Weve all come together to Bridge the Gap and weve bumped into colliding assumptions. We are trying to change the culture of the conference to include community, and there are growing pains. We have to try, however, to build a new vocabulary for this new mixing of cultures. Not just the language or vocabulary of different countries, but of different experiences and different lives. At these conferences some speak in such cold terms, in cold concepts, in technical language. And yet we also speak of human rights, which is about flesh, and bone, and people. The language of institutions, of research and proposal writing and the language of community and people sharing face-to-face are sometimes different languages. One conference participant thinks of soldiers and military and war in his country, and each time a researcher mentions the "target" population, he shudders. A man from Zambia sits at the long-term survivors session, and he is amazed to see a survivor of 17 years. That would be very unusual in his country. But also, to him a "long-term survivor" is someone who has survived many years without getting HIV.
There is also a contrast in how people feel about what is needed and when. All are concerned that much is needed, and quickly. All are struggling to create better things for the future. Many are talking about crafting a more perfect policy, or a more perfect vaccine. In Africa a woman must make the choice to breastfeed or not it is a personal choice no matter what the official policy is or whether a policy has yet been crafted. We have to understand her choice and understand that human beings do not always fit into perfect policy design. And we do not have time to wait for perfection. Regarding treatment access: most people who are fighting for treatment access at this conference may not be there for the results. " And Id really like to be here for the results", says the man from Zambia.
We have seen many cross-cultural exchanges. In one of the nutrition sections, a woman from Thailand came to an understanding that fasting was not always a nutrition issue or an indication of a nutrition problem, but that in some cultures fasting is a kind of a healing, too. And she will never forget what she has learned. We can acknowledge the diversity and grow from it and build on each others strengths.
There are many magical things happening here; this conference is in an airplane hangar and yet amazing, magical and healing spaces have been created, including a peaceful and beautiful PWA lounge and the wonderful massage oasis and candles nestled in mounds at the quilt space. These are also the human aspects of the conference.
There are many interesting people here from many rich and different perspectives. Look at their faces; hear their stories; listen to the cadence of their voices: its community. And real personal learning comes at this conference for many people from doing rather than from listening. One woman said she felt like she has earned a degree in HIV from the University of AIDS.
The best part of these conferences is the hallway conversations. Thats what you tell the little chickens who are at their first conference. The experience of our rapporteur team is one of those; one very big rich hallway conversation. Maybe the conference in Durban in 2000 should just be held in one big hallway.
We are doing many good things and we have many things to learn. Our knowledge, and our attempts, and our mistakes, and our successes our rage and our joy. All of these will form the structure of the bridge that we create together.