Abstract #146  -  Community-based advocacy for PLWHAs through testimonials
Authors:   Presenting Author:   Mr Pelletier Vincent - AIDES
Additional Authors:  Ms. Marjolaine B้nard,
Aim: Most of the PLWHA that AIDES supports, express the need to talk about HIV in private and public settings. Testifying is a way for PLWHA to talk about the issues which concern them: their affective needs, the effects of treatments and poor resources. Testifying is therefore a means to make the general public, and more specifically politicians, able to understand – by identifying themselves if possible - the realities that PLWHA have to face. But, even now, testifying presents several risks, as today PLWHA cannot tell their positive status without the fear of being rejected or discriminated against.
Method / Issue: In AIDES, the possibility to disclose or not is a big issue. We decided to create a working group with two goals: to think about a framework which would support people who want to testify and how to help them become actors of their own advocacy. The group consists of actors of AIDES who have already had experienced of testifying. They worked on ways to accompany people so they could choose to testify freely giving them all the information they need to make the decision. The participants have thought about what they would gain and what they would loose when they testify as individuals or as part of a group. With the experience of everyone, the participants highlighted some recommendations and processes and created a guide in 3 parts: preparation, support and evaluation. The guide also offers methods which enable people to choose to testify, to prepare the testimony with personal and common goals and to take stock. The second part of the project is to organise a workshop between PLWHA and journalists in order to produce recommendations for each part.
Results / Comments: Testifying has a few positive effects: it can strengthen self affirmation; help people to rebuild their self esteem, and make sense of being positive, which can also be part of a collective strategy with political goals. In order to make the testimony more efficient, the strategy must be prepared: • Anticipate and plan opportunities to testify • Learn how the media works and communication skills • Think about conditions of testimonies • Prepare personal and collective goals Effects of testimony in daily life, profits and risks, direct and indirect – e.g. consequences on relatives - have to be considered before testifying. This preparation could help PLWHA to evaluate the risks induced. A few frameworks should be built in order to secure PLWHA: juridical and ethical frameworks, coaching and monitoring. Participants highlighted the interest to work collectively on the testimony, trying to make the PLWHA advocacy actors as experts of living with HIV.
Discussion: The next step is to go forward, the group wants to work with journalists as opinion leaders and vectors of social change. They are in the best position to relay to the public what PLWHA have to say. To work with them about their ability to listen is an important lever to make expression of PLWHA more powerful.
Go Back