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COMMUNITY SYMPOSIA
Closing Comments 29 June - 3 July, 1998

PART 2: COMMUNITY RENDEZ-VOUS CLOSING CEREMONY, 2 July 1998
as  presented by MaryJane Musungu (Zambia)

Introducing the Rapporteurs
Winston Zulu is a charming man from Zambia. Rita Arauz is a fiery Nicaraguan. Carsten Schatz is a silly queen from Germany. Noi Apisuk is a soft-spoken activist from Thailand. Bebe Loff is a legal Masai warrior from Australia. Lisa Heft is a crazy woman from the United States who never shuts up. I am MaryJane Musungu, a stubborn Amazon from Uganda. Our job has been to travel through the conference and gather information and impressions of the community tracks threaded throughout the conference. We define ourselves around process, so that is what we will speak to today. The conference has been full of complexities. There has been joy, and conflict, and rage, and growth. If we summarise 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.

Telling Stories
So instead we tell stories; we gather impressions…to define an experience. We will also share with you some of the resolutions that came out of networking sessions and symposia.

One rapporteur was at a session with a panel full of community members; and he imagined that somewhere else in the conference at the same time there was a panel full of scientists…and that it would have been so nice if the scientists could have been there together with the community in that very moment to help exchange ideas and answer questions. This reflected to him Bridging the Gap. It would be helpful to create situations in the conference, which are not only presentations of papers but also venues for dialogueue between people living with HIV and AIDS and the scientific community.

Objective Science and Subjective Experience
Along similar lines, members of the community symposia on long-term survival with HIV proposed that the International AIDS Society and UNAIDS make a sustained commitment to bridge the gap between objective science and the subjective experience of people with long term HIV.

We noted a bit of frustration, that some forums seemed to consist of people talking about the situations in which they were finding themselves and not moving ahead. The Vancouver conference and this conference built upon each other; in Vancouver many felt it didn't yet feel like "One World /One Hope"… so now we try to build a Bridging of the Gap. It is impossible to bridge these gaps in a week, but it is possible to identify the gaps. One of our biggest achievements is that people are willing to talk about these gaps, making recommendations and resolutions to solve this challenge and even setting timeframes to see how we are progressing towards the solutions.

Research Methodology and Respect for the Dignity of Research Participants
Many participants in the community symposia expressed their concern that some of the research presented seemed to be done for the sake of research, or followed questionable methodology. In some cases the participants in research, the people, had not been provided with an understanding of the research (and in some cases, did not know they were being researched). Many felt that they had not been given advice about risk reduction techniques, nor were they informed of the research outcome.

Decision-making that Reflects Diversity
Several resolutions came out of these meetings and symposia. One resolution put forth from the networking group of gay men and other men who have sex with men was an agreement that current HIV and AIDS decision-making networks do not seem to reflect cultural, religious, economic and sexual diversity.

The Information Gap
The Africa regional meeting identified an information gap. They proposed a resolution about gathering, accessing, and disseminating information.

North and South Solidarity Leading to Treatment Access
Some conference participants feel that people have been given a chance to ask questions and in doing so identify areas of action; possibly not action plans but areas needing action. For example, the issue of provision of information is as important in the south as it is in the north, and reflects a respect for autonomy in treatment choices. However, access to treatment and treatment information must be fought for by people in the south and people in the north in solidarity. And it is not just a matter of access to treatments but also access to information; access to occasions for exchange. Connection between people. Connection between policy and action. This sort of dialogueue exists uniquely in the community aspects of the conference.

Cultural Understanding
The North America regional networking group put forth a resolution to work towards increasing knowledge and understanding of the cultural contexts in their region.

Collaboration
The traditional, alternative and complimentary medicines symposium identified the need for traditional medical practitioners to collaborate with biomedical personnel. This symposium resolved that since over 75% of people with HIV and AIDS world wide use complimentary and/or natural therapies, traditional, alternative and complimentary medicine must receive a higher percentage of global health funds.

The networking meeting on community-based research recommend that such gatherings as these be used to bridge the gap between discussions on community-based research, theory, methods, practice and ethics in both the science tracks and also the Community Rendez-Vous process. Bridging the Gap begins here.

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 people with AIDS. 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 man's issue…but he makes it his issue. We may be different but we have to fight together for our rights because, as this man says, the next one might be me.

One resolution that came out of the migration networking meeting was that the third world is also inside the rich north. They call on the third world people living in the north to demonstrate their solidarity both to people living with HIV in their communities and also to transform the call of Bridging the Gap into the practice of solidarity with the south.

From Disorganisation to Results
And now to the process. At some points in the conference, some meetings seemed extraordinarily disorganised. But the spirit was marvellous and the process of change has been assisted.

Some networking meetings resulted in specific recommendations. People communicated and then took action. This is what makes community so unique.

We Take Action

We take action.

For example, the Latin America and Caribbean networking session agreed to organise a community forum in the next Pan-American AIDS Conference. We take action.

The International Community of Women with HIV and AIDS networking group resolved that they need to keep contacts with the Global Network of People with AIDS board, and work together to ensure that by January 1999, there exists good collaboration at grassroots level between local groupings of those two networks. We take action.

Of course, networking also happens in the science community. But a conference setting is an unusual experience for some conference participants…and enormous things come of it, like an interest in forming alliances with other groups and a desire to strengthen networking capacities. We take action.

Many of you have been coming to these conferences for a very long time. Maybe you dinosaurs are frustrated because some of the sessions have been too elementary and perhaps for some others the methodology has been too rigid. For you little chickens, coming to a conference at all may be a new and unusual experience. Some of you may have had your very first experience flying on an aeroplane to get here. Standing up and presenting in an environment such as this for many of us forms part of the empowering process. This is an amazing thing.

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 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 agonisingly 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. In the last seven days, we have had 5 regional meetings, 6 networking meetings, 14 community symposiums, 46 skills building sessions, 4 cultural events, 8 orientation sessions, and even more happening spontaneously. Perhaps this conference marks the continuing of a change, and is not an end in itself.

Regional Meetings
All of the regional meetings identified five common concerns:

• Problems related to access to appropriate treatment in almost all countries of the world.

• Need to improve advocacy skills and practice relating to the human rights of people living with HIV/AIDS and communities affected by HIV/AIDS.

• Lack of funding for HIV/AIDS community-based initiatives, as the epidemic gains strength each day and resources to fight it become scarcer.

• Members of target communities must be involved in the design and delivery of programmes directed to them.

• Need for expanded, cost-effective and reliable means of communication and capacity building sustain improved communication.

The symposium on human rights made recommendations for the improved documentation of HIV-related human rights abuses and the implementation of mechanisms for proper monitoring.

Several resolutions coming out of these meetings, including the skills building workshops and the Asia Pacific working group, can specifically inform future conferences. Other input from symposia and workshops noted that some of the physical structure of the rooms, seating, and sound systems made it difficult to achieve what might have been otherwise achieved. They recommend that the conference organisers bear this in mind. Also while some participants felt that the skills building sessions offered them essential basic tools, others felt that they did not cater to the different levels of participants' experience. We are hopeful that the Durban 2000 conference can build on what's working here.

We want to highlight the following aspects of the resolutions and present them as recommendations to the core organisers of the conference:

Human Rights Documentation Monitoring

1 - UNAIDS work with the office of the High Commissioner for Human Rights to establish and promote mechanisms for the documentation of HIV-related human rights abuses or omissions and best practices at the national and international levels. This includes a special rapporteur on HIV/AIDS and human rights and a task force to monitor the application of the UNAIDS guidelines on HIV and human rights.

Durban 2000 - How to Bridge the Gap

2 - The International AIDS Society (IAS), in conjunction with all conference co-organisers, ensure that at Durban 2000, symposia, round table discussions and rapporteur summaries in conference plenaries be used to bridge the gap between discussions on community-based research, theory, methods, practice and ethics in the Community Rendez-Vous and in the general conference proceedings.

Autonomy - Equity - Solidarity
We repeat that we feel strongly that the provision of information is as important in the south as it is in the north, and reflects a respect for autonomy in treatment choices. Access to treatment and treatment information must be fought for in the south, and the north must show solidarity with the south on this issue. It is not just a matter of access to treatments but also access to information; access to occasions for exchange.

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. It is community. And real personal learning comes at this conference for many people from doing rather than from listening. We are doing many good things…and we have many things to learn. Indeed, the best part of these conferences is the hallway conversations. Well, aeroplane hangar conversations. 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.

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.

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