By Callie Long*
Being open about living with HIV can still be daunting and damaging, even some 30 years into the response to the virus. The pernicious stigma that cleaves to testing positive, remains one of the main barriers to a truly effective response. While billions of dollars have been spent over the last few decades to tackle HIV and AIDS scientifically and medically, with huge gains in prevention and treatment, social and cultural barriers still remain in what is the greatest epidemic in modern history.
It is within the realm of the social and cultural that the faith-based community has been tested most severely, often being forced to confront the implied questions of morality that have been such a part of this polarizing disease. Within this context, the World Council of Churches Ecumenical Advocacy Alliance (WCC-EAA) and the International Network of Religious Leaders Living with and Affected by HIV or AIDS (INERELA+) joined with the Global Network of People Living with HIV (GNP+) and UNAIDS to launch the Framework for Dialogue in August 2013. The framework would be a tool driven by eight principles to facilitate dialogue and joint action between people living with HIV and religious leaders. All dialogue would be country-owned and evidence-based. The dialogue would be people-centred and not do harm, and promise equal and meaningful participation by all, while being innovative in scope and nature. And the dialogue would be action-oriented and happen in a safe space free of judgment or discrimination. To date, the strategic framework has been initiated in seven countries, including Kenya and India.
Jane Ng'ang'a, national coordinator for the Kenya chapter of INERELA+, says that the framework helped plumb the depths of issues related to effectively addressing HIV in the faith community. “When we held the first dialogue, we were surprised by the issues” that were raised by people living with HIV, “to the extent that they felt that they were not being meaningfully involved in faith communities.”
Many people living with HIV said that the level of involvement often amounted to being asked to “come and sing us a song,” said Ng'ang'a, which was supposed to translate into being involved. “When they expressed some of these issues, then the religious leaders realized there was a problem”, including the fact that some groups within the faith community were still left behind. Once again, stigma rears its head. “Women who have lost their husbands to AIDS” face “a lot of stigma in faith communities. Every time another married woman sees her speak to her husband, there is trouble. Single women in the church and especially those openly living with HIV” also encounter stigma. Using the framework meant that “we were able to unearth some of these hidden issues fueling stigma that were not being addressed.”
A people-centred approach that is all about action
Ng’ang'a notes that looking at evidence through a faith lens was important. “The Kenya Stigma Index Survey (2013) reported stigma and discrimination at over 45% at the national level. Within various counties it stands at different levels.” By bringing hard data to the table, and creating a safe space in which to have a dialogue and hear from people living with HIV about their personal experiences “was very powerful. Of course, religious leaders listening in, they were shocked.”
Ng'ang'a notes that part of the reason why people were shocked was that many had simply not thought of the extent stigma impacts the lives of people living with HIV. “That interaction, that dialogue process, was very important. We were able to come up with joint actions that religious leaders have been able to implement together with people living with HIV.” One of the most powerful actions, according to Ng’ang’a, is advocacy which, while started at the national level, has taken hold at grassroots level.
Across the ocean in India, Dr Asa Herwadkaer, who is a board member of INERELA+ and the Asian Network on HIV and AIDS (AINA), said the framework methodology first makes it clear that there must be equal participation between the networks of positive people, and faith leaders as the dialogue is developed. “[Equal representation] is something that one knows we have to, but usually it is not followed” she said. It meant that everyone participating shared a “platform for understanding the framework.” The next step will be to make sure that it plays out nationally as a “basis for dialogue”. The Art of Living Foundation has expressed willingness to host the event.
The founder of the Art of Living Foundation, Sri Sri Ravi Shankar, has been very supportive of interfaith dialogue and a compassionate response to HIV for many years. Herwadkaer recalled an earlier request to Art of Living to host an interfaith meeting on HIV in 2010. “We approached His Holiness Sri Sri Ravi Shankar for a meeting and instead of the 70 or 80 leaders that we proposed, he said “Let’s call everybody” and we conducted one of the largest interfaith meetings on HIV with 350 faith leaders positive delegates and international delegates. It was the largest summit on HIV in India in 2010.
Gaps that remain
Dr Herwadkaer believes that ensuring equal space for all as foundational to the framework is the right approach. However, “the only thing is that people are not really aware of it”, which means involving leaders from faith-based organizations and people living with HIV networks globally to make sure that word gets out about the initiative.
Ng'ang'a notes that one of the big gaps identified is the need to support the process so that the joint actions can be implemented fully and documentation of impact well articulated. “What came out was very beautiful and good recommendations, but we have only been able to implement about a third due to lack of resources.”
Although critical, it is “not just enough to hold the dialogue.” She recommends that once the dialogue has happened, people should look to the implementation of the actions, “because this is what will change the narrative of stigma.”
*Callie Long is a media development practitioner, journalist, and organizational communicator with a special focus on conflict, health and AIDS advocacy.