After movie conversation at the Premiere of One of Us, World AIDS Day

[Marie Lamboray]

 

The movie is available here:

https://vimeo.com/asyouopenyoureyes/oneofusen

 

Panel:

David and Jessica: the movie makers (Visual Development)

Jean-Louis: co-founder of The Constellation

Usa: SALT facilitator of the response in Northern Thailand for many years, she also helped David and Jessica prepare the filming.

Participants:

Cyril: The Constellation member from France, formerly working in UNAIDS and WHO

Jan: SALT facilitator in Belgium, working with businesses

Leonie: SALT facilitator in Ghana, working for girl’s equality and education

MariJo: SALT facilitator in Spain, working on HIV, women issues and activism

Valens: The Constellation board member from Rwanda

Alexandra and Jef

And other viewers from Belgium, France, The Netherlands, Pakistan, Rwanda, Spain and USA.

Facilitation:

Marlou de Rouw

 

After movie conversation

 

Leonie: A powerful story that will resonate with many people.

 

Jef: A very touching movie, I feel a connection with the mother-daughter story.

 

Alexandra: For me the main message is that, first, we have to overcome fear…

 

David and Jessica: We had a first draft a long time ago, but continued editing the movie… Watching it now, we remembered what happened behind the scene. The feeling of connection we had with Khun Tew. How everyone was very enthusiastic. A very active community. I wish we could go back!

 

Jean-Louis: Ta Wang Tan is indeed a very special community— a source of inspiration for the Constellation, as we appreciate and transfer what we learned from Ta Wang Tan’s community all over the world.

David and Jessica captured the spirit of the place. The love of a daughter for her mother. The mother transformed by the support of a doctor. From ‘I am nothing, I want to die’ to an active and meaningful life.

Usa, who was accompanying the community in the 90’s is a special facilitator. How many times did we not hear her say: “I did nothing?” but her facilitation is invaluable as she opens the space for Ta Wang Tan’s story to unfold and be told.

Today, in Belgium, our capacity to think, to be in solidarity in our family, with neighbours, with the people who are vulnerable is overlooked. There is fear. There is “psychological shock”, as our Minister of Health lamentably said yesterday. So, what can we do? We can learn from Khun Tew when she says that karma is what it is, but at least we can do our best and try to appreciate strengths here and now. Thank you very much to all.

 

Usa: It is interesting to see the movie about a year or so after the filming and remembering… Congratulations to the team, you have done a great job. It brings back a lot of good memories being there listening to people, and I feel inspired again, thank you for all the efforts. It is an interesting experience to watch it with people from all around the world. There is great solidarity in doing this. I have not done this before, and it is a great feeling. Thank you Marlou for the initiative.

Ta Wang Tan is indeed special. Ordinary people doing their best; it was nothing extraordinary, but they kept at it. In the process, they felt strengths they did not realise they had. They do the best they can because they love each other, and they care for each other. When interviewing people to prepare the movie, I asked them what their big secret was, many people said: “Love.” If we remember the love that we have for each other, we will be alright.

 

Jessica: The energy Usa invested in helping us was extraordinary. Even when she left, she called to help us.

We could feel the love. We saw how united the community was and that the memory of the past was so present. They were prepared for the coronavirus epidemic and reacted positively as we had the opportunity to find out with: EXPERIENCE, Episode 11 of the series Behind the Mask: https://asyouopenyoureyes.com/behindthemask. They have an amazing network.

 

Cyril: Thank you for the invitation and exchanges. I find this very fruitful and interesting. I also want to thank David and Jessica for this video, its quality and how the movie is helpful to understand what The Constellation is doing.

I remember visiting, with Marlou and Jean-Louis, a hospital in Zimbabwe in the late 90s. Nobody dared to talk about HIV/AIDS. People died in hiding. The kind of intervention that Jean-Louis has been trying to promote over the years was the right thing to do. It is very good to see this experience of this community in Thailand that we have followed through the years.

Having spent five months trying to help out WHO African teams against COVID, we are following what is happening in Europe. What Jean-Louis said about the fear and how we are thinking that we are going to solve this through digital tools only is really something… Learning from the experience of HIV/AIDS and the work you are doing stimulating discussions is I think very important. I haven’t seen it, even listening today to the Secretary of UNAIDS’s words, I did not see the link between what we learned and how we worked with communities on HIV/AIDS and today’s crisis. I think that it is very unfortunate.

I am trying to publish a two-pager about this. In France, we have a Ministry of Solidarities and Health, but where are the solidarities in the work against the coronavirus? This is what we could learn from Thailand and the important words of Jean-Louis. There are so many unbalanced and vulnerable groups and populations in France despite all the studies done and findings. It is refreshing to see that there are people in Thailand that have figured this out.

 

Jan: A very impressive movie. I want to congratulate everybody who participated and contributed to this powerful document. ‘Living in fear’ and ‘Living in the unknown’ about how transmission is going on, how is infection going on, is so recognisable… What I take from the movie is community-based training, community-based comforting of each other, community-based restoring of hope, community-based rituals; and I think all of that is very relevant today and tomorrow.

 

Valens: Thank you Usa, David and Jessica for the movie and Marlou for the facilitation. I thought about what is happening today in the Kigali Convention Centre where the Director General of the Rwanda Biomedical Centre and the First Lady of Rwanda were talking about how HIV is still devastating the country: 3000 people being killed by HIV each year in Rwanda. We could not imagine that so many people are still dying of HIV. We can’t compare the stigma people suffered as described at the beginning of the movie to what is now being done during the COVID crisis. Today people are able to cope with HIV/AIDS, they came out of stigma, they came out of bad practices towards those infected. We are dreaming of the times when people will be able to cope with the coronavirus… Not only following the politics. Each person needs to act and contribute for us to be able to get out of this situation.

 

Marlou: Thanks to Karin, the movie was shown today in several refugee’s camps in Uganda and we also had a session with the Young UN with MariJo and Luc in the panel. They were also very impressed especially about the community aspect. If you have ideas to bring the movie and the inspiration forward, get in touch to discuss and brainstorm together. Other screenings will follow during this and next month.

 

Usa replies to two questions:

How was the relationship with treatment in the 20 years gap in the movie?

Ta Wang Tan, as in other places in Thailand, have been receiving antiretrovirals so that has helped a lot of people who live with HIV. Ironically, with access to treatment, the number of people in the group living with HIV decreased. In the movie, Khun Tew mentions that, in the beginning, they started with something like 4 persons. The group expanded to 70 at some point, but, with access to treatment, the number went down. Last year, there were about 7 people still in the group. Most people think that there is no need to be joining the group since they can directly access treatment and some living subsidies from the municipality. They feel that there is no need to disclose their status anymore. They just go to the municipality and register their name to get the help they need. That is why HIV is kind of regarded as one of those diseases that people live within the community. The health volunteer team headed by Khun Wipa at that time till now have been spending a lot of efforts and attention on helping people living with other chronic diseases and other conditions including promoting wellbeing.

How is Ta Wang Tan taking up the challenge of COVID?

So, in a way, they were quite ready to tackle COVID when it came because the health volunteers were there. They have been counselling people in the community. They know everyone in the community. Whenever there is something happening in the community, they visit the family and provide help and the referral. So, they have been doing the same thing with COVID.

 

MariJo: This is something that has kept me a little bit anxious about: how do we keep our health? I have been HIV+ for 25 years. Treatment was a very important thing for me, as for many people, but a few years ago I started to think that, to a certain level, treatment was a tricky thing. Not to individuals, but for the whole pandemic. I think that the same is happening now with COVID. Having known how communities, in the same way as Tew was explaining in the film, help people living with HIV look at the best of themselves to just care for each other because doctors in hospitals could not really care for us because they had no treatment. That is what scares me a little bit; that we link help all the time to treatment. In many ways, the people living with HIV that survived, they survived, at least in the first period, because they had support. People who did not have support did not survive. Treatment is a very good thing for taking care of our bodies but not of ourselves as communities. Once doctors could provide treatment, most of the movement trying to put more human outlook to the HIV pandemic just shifted. Now when people are diagnosed HIV positive the doctor says: “Don’t worry, here are the pills and you can go.” Most of the people do not have any support about what it means to live with the virus. I am afraid that this is happening with COVID too. We are all looking for the vaccines. It is fantastic that we can have a vaccine. But what about all the reflection that we need to do about how we care for each other and how we care for the environment? How do we live our lives? We miss opportunities to just go deeper into thinking about what makes us care for each other. We need to heal our bodies, but we also need to heal our lives in general.

 

Jean-Louis: Khun Tawin cares and he knows that communities, not health centers are the centre for care, the centre for love. In English “care” means both “medical care” and “I care for you”. This is very well shown in the movie. His role is not limited to treatment: there were none, but he still works, he is interacting with Tew. The film also very well shows how benevolent the government is in Thailand, at least in Northern Thailand. What authorities could do, they did. They supported people with AIDS and their support groups. When I came to learn from the response in Northern Thailand in the 90s, national AIDS program authorities and community leaders told me that to stimulate a real response by the Thai people the first thing they did was to stop the UN from projecting fear. Because fear was leading to discrimination. The first thing was to get a clear message on how the virus spreads. And when we deal with COVID-19 in Belgium we have a lot to learn on that score.

 

Jessica: In the 3 hours of interview of Khun Tew, there is a sentence that did not make the cut where she actually says that, especially in the beginning, it was thanks to Khun Tawin’s care, love and attention that she survived, otherwise she would not have made it.

 

Usa: I would like to respond to MariJo’s point. I am recovering from COVID, so I spent about 2 weeks isolating myself in my bedroom, my son in his. At some point, I did feel like COVID is a lonely disease very much like HIV was, isolating yourself from other people, you are trying hard to protect other people and being alone with yourself gives you a lot of time for reflection. A lot of things crossed my mind during these few days, thinking of HIV, COVID and what we learn from one could help for the other. I was also wondering what would have happened if I caught the disease while living in Chiang Mai, in Thailand. Probably, it would have been a little bit different because maybe some health volunteers, not just my family, would have come to visit me, looking for each other and caring for each other in some way. With COVID, as well, we still need to think about how we live with diseases around us and with people around us, and how to look for strengths wherever we are in order to cope with the challenges that we have. We are not always living in fear, we are always living in hope.

 

Marlou: This is the seventh and last episode of the As You Open Your Eyes adventure. Thank you, David and Jessica! You have made us travel from Mauritius to Thailand, touching our hearts with stories. We are very grateful for that.

 

What did the communities bring to you, David and Jessica?

Jessica: It is a difficult question. Lots of things.

David: It is a question very close to why we do what we do. Why we want to make films. And also, why we have been producing these documentaries with you and not with somebody else. It is because, all of us here today, we have sense for looking for the beauty in everything around us, don’t we? The small stories that happen around us that we do not want to be unnoticed. Most of you have been doing this for many years. Maybe some of you write it down, and we have chosen the cameras to collect this and make us feel connected with this beauty around us. We have been able to capture beautiful stories that would have been unnoticed as thousands have happened today and nobody has collected. This is the reason we do what we do. Maybe you have other reasons, but this is the connection that we have with the whole community of The Constellation.

The Constellation also gave us a sense of worldwide connection. We’ve travelled a lot before and we’ve gone on holidays, but when you interview people on their personal experiences and then make something that can touch other people, it kind of feels like a web forming around the world, for me. I met and spoke to so many people about such private issues that it makes me feel connected to the whole world. The Constellation brought us more than the other way.

Marlou: Thank you all for a lovely evening. Keep the love up! Keep the care up!

 

More about Ta Wang Tan here: https://sites.google.com/a/communitylifecompetence.org/a-way-to-acc...

Ta Wang Tan and self-assessment:

Measuring your progress is a job for a team,  https://aidscompetence.ning.com/profiles/blogs/measuring-your-progr...  

The power of the learning cycle, https://aidscompetence.ning.com/profiles/blogs/the-power-of-the-lea... (French in comment)