Last Wednesday, the GROW team attended an HIV/AIDS sensitization session in Lamogi sub-county led by Franny, our project coordinator. This was the first such session to occur in the village; though the community members had been educated on HIV/AIDS, they had never come together to discuss their perceptions about the disease or how those living with HIV/AIDS should be treated. Our previous post talked about the experiences of HIV positive mothers in different communities; this session gave us insight into other perspectives.
Franny first asked the group of almost 100 people why the rate of HIV seemed to be increasing again (as a reminder, Franny told us that the rate has risen in the past two years from approximately 6.3% to 7.3%). The community members raised several valid points. Several discussed the tendency of younger members to go to clubs, get drunk, and have unprotected sex, thereby spreading the disease. Others discussed the possibility of increased testing being a reason: since awareness about HIV/AIDS is spreading, more people are getting tested and finding out their status. By this logic, the actual number of people living with HIV/AIDS (PLWHA) is not increasing, but the reported number is. Many members of the community seemed to think that antiretroviral drugs were actually facilitating the spread of disease. As one woman said, “Before, people with HIV/AIDS were easy to identify. Now, thanks to drugs, they all look healthy, so you can’t immediately tell someone’s status.”
This discussion led to suggestions on how high levels of HIV/AIDS could be reduced. Some of the responses were quite shocking for the GROW team, despite the fact that we had been warned beforehand about the community’s attitude towards the disease. One man said that people who identified as HIV positive should be put in separate government housing with signs indicating their status. Others suggested that PLWHA should have signs or stamps on their clothes that are immediately visible. A few others said that ARVs should stop being distributed, so that those with HIV will be “wiped out”. At one point, a man stood up and said that women were the ones responsible for bringing HIV/AIDS into households. This is not to say that all members of the community thought this way, or that none of them had valid suggestions. A few members insisted that sensitization and awareness sessions such as ours continue and become more widespread. One man argued for reproductive health to be part of the local school curriculum. Several members also pointed out that due to fear of discrimination, or that someone at the hospital would recognize them and share their status with their community, many people remain unaware of their status and do not get treatment while unknowingly spreading the disease.
It was interesting to see how Franny handled each statement throughout the session. Whereas I and a few other members could not help but grimace slightly at some of the responses, Franny simply nodded and listened, addressing factual inaccuracies as they came. For example, when talking about ARVs, Franny informed the community members that sometimes, after prolonged ARV usage, a basic HIV test can return negative results. Because of this, PLWHA will discontinue taking medication and either die or become very sick. Franny talked about alternate indicators such as CD4 counts and viral loads, and was backed by examples from community members of people who had died after stopping ARV treatment. She continually engaged the villagers, facilitating open discussion between them and welcoming all perspectives. When we had finished the discussion and Franny asked for the members’ opinion on the session, they all said they had enjoyed it and would spread what they had learned to other members of the community.
I wanted to write about this session because of how strongly I felt while it was happening. I can’t speak on behalf of the other GROW team members, but I found it very hard to contain my anger while listening to the discussion. Several times, statements such as “people who are HIV positive should be branded” were met with cheers or laughter. I found myself wondering how people could be so completely lacking in empathy, especially after having met and reading about the wonderful and inspiring HIV positive mothers that our project targets. However, after reflection with the GROW team and watching Franny work, I realized how unconstructive my anger and judgment were. It was so important for us to be at this session, to see what kind of starting point GWED-G has to work with when conducting such sensitization campaigns, and appreciate the difficulties they face in changing attitudes toward HIV/AIDS in different communities. I also understood that dismissing opinions that I find disturbing or wrong doesn’t make them disappear. As hard as it may be, bringing these opinions to light and discussing them amongst community members is an essential first step to destigmatization. Even in this initial session, the community became more informed about inaccuracies in their assumptions and moved, at least slightly, towards thinking more openly about HIV/AIDS.
I think it’s also important not to demonize people who hold such beliefs, despite having at first done so myself. It discourages engagement with their opinions, and prevents constructive discussion. Granted, there may be some members whose opinions on HIV/AIDS can’t be changed, but the reason Franny was able to engage with the community as a whole so effectively was because she didn’t react with animosity toward any of their statements. The same can be said for any argument. It’s much harder to convince someone of a contrary opinion when feelings of disgust or condescension permeate the conversation. Maybe that’s why GWED-G’s sessions seem to be so productive. In Franny’s case, the community seemed to really like and trust her, which no doubt made the discussion much easier.
The session as a whole was very enlightening. I personally gained a lot of perspective on how GWED-G’s process works. We hear so often in GlobeMed about the damaging attitudes towards HIV/AIDS, and about the success of GWED-G in changing this in several communities, but it was interesting to see what the “in-between” entails. More than anything on this trip, I’m learning about how many challenges GWED-G and their target communities face in destigmatization, which makes their successes all the more incredible. I can’t wait to learn more about our project with the GROW team and begin to really understand the different needs of each community. In the meantime, we’re continuing to meet inspiring people and enjoy the many sights and delicious food that Gulu has to offer, all while getting completely spoiled at Pamela’s house. Keep reading for more stories from the field!
GROW team out.