Katie Chalcraft has been awarded a Winston Churchill Travelling Fellowship and is currently travelling in Malawi and South Africa, exploring the use of arts in programmes working with people living with HIV. This blog is the fourth in a series of journal entries from Katie as she travels.
People Like Us
In 2007 Temwa made a film about HIV in the community. Jumbo, Project Coordinator at Temwa tells me that people love to watch films here. Video shows attract large crowds and people in the community will walk over an hour to get to one of the showings. They have become an effective medium for transmitting health messages. The week before I visited Temwa they were conducting a series of shows across Usisya in partnership with Utu Africa.
The film People Like Us was developed in response to comments from the community that the people in the films saying they were HIV+ could have been actors just saying they were HIV+ for money, they were not ‘people like us’. Temwa set about finding people from within the community living with HIV who were willing to share their testimony on film. They found three people, I interviewed two of them.
Jumbo and I walked in the midday sun along sandy paths and up a rocky mountain path to reach Jane’s house. On her veranda she sat leaning against the wall, her daughter was absentmindedly playing with the marbles from Bau (an African game) young baby on her lap. Jumbo translated for me as I explained to Jane why we had come to talk with her. One of the main motivations behind my research was to find out more about the impact that being part of theatre and visual arts programmes has on people living with HIV. With HIV theatre projects in particular, behaviour change is often evaluated by monitoring knowledge, attitude and behaviour change among the target population. However, I am interested in the psychosocial impact that performing one’s story of living with HIV has on the performer. Whilst I had not anticipated interviewing PLHIV who had been in films, the opportunity arose and I grabbed it. How had being in People Like Us affected Jane’s life, her attitude towards living with HIV, her role in society, her relationships in the community?
Jane glowed with pride when she spoke about her involvement in the film. She explained that the film was an appeal to the general community to know their HIV status. She said that it took a lot of courage to act in the film. In the support groups for PLHIV there were many people but very few were public about their HIV status. She said it took her some time to decide. Some members asked for money to participate in the film but Jane told me she did it for free. “I wanted to show people that it can be done without money. Today people confront me, you did this for nothing, why? I tell them I wanted to give them a message.”
Jane tested +ve in Zambia in 2005 and started on antiretroviral therapy in 2006. She tells me that she had a very good counsellor and all her problems and concerns vanished right there in the testing room. She feels very proud, usually after the film is shown, people come to her home. They see her preparing nsima and digging in her garden and see that she is healthy. She is very proud when people see what she is able to do and how she is able to live, proud of what she has achieved.
I asked if people living with HIV came to her for advice, she said it is very difficult for people to do this because that is automatically disclosing their status and people fear to be laughed at, men say if I say I am HIV+ then I can’t propose love to any woman.
I ask her: what elements do you need to live a full and happy life? She responds: not feeling sick, participating in sports, good food, a leak-proof house, feeling energetic, able to do work, having capital, running a good business, and being able to support family. Jumbo used the training I had provided 2 days previously to run through the batteries methodology with Jane. He used a stick to draw the batteries in the red sand of her yard.
Normally this tool would be used in relation to a programme intervention rather than something as short-lived as involvement in a film. However, it seemed like a good opportunity to talk through how the film had impacted Jane’s quality of life if it had and also an opportunity for Jumbo to put into practice what he had learned.
Jane cited that her emotional happiness had improved due to her involvement in the film – she was happy that people were talking about her status and said that she feels proud when people watch her on the screen and when they come and talk to her about it, it makes her feel better about herself. Following the film she has been approached by a number of organisations to attend trainings – this she tells us has empowered her and also contributed to the increase in her energy levels in the fourth domain of change: Livelihood and Security. Through the trainings she has been exposed to ways to find food and money for her family.
For Anderson, talking in the film about his status was not difficult. His main motivator was his interest in educating people. He started to be open about his HIV status after joining the Zetuwekha support group set up for HIV+ people by Temwa. Following the film he also had many people approaching him, he now calls himself a public figure. He speaks at events about HIV – when people are meeting to play Bau and at funerals. He prides himself on giving correct info about HIV to the people in his community. He says he has seen an increase in the number of people going for testing as a direct result of the film.
I ask where he gets all his HIV info that he is sharing in the community – he tells me he is learning from trainings and a support group. But the support group is not meeting at the moment, they got funding from the National AIDS Commission but, he tells me that the people in the support group who were in charge of the money squandered it, a story that is not unfamiliar in Malawi. I think of the corrupt border guard I encountered who was asking for my jewellery in addition to the extra 5000 Kwacha he was charging me to enter the country. Since 2010, no one meets. He tells me he misses it so much, the group once had over 20 members whenever they met they had an experience, they would learn from each other. He said that after the group met he would always go home happy. I ask him what is the solution? He says Temwa should write letters to the group members and invite members back. For me, his words underline the importance of community in achieving emotional wellbeing.
So what does a good QoL involve for Anderson? Being HIV negative, having a happy family, good food, a happy house, access to medical services, having a fishing net, being able to catch fish, eat fish, sell fish, farm and grow his own food.
Similarly to Jane the reasons for improvement in health were not attributed to the film. However, in relation to emotional happiness he says that now his energy level is at 10 – he has no concerns, no worries and is very proud of what people see in the film People Like Us. As a result of his involvement in the film he took part in positive living training (another Temwa programme) which he tells us taught him a lot, especially about diet and safe sex. Whilst his livelihood was not directly influenced by his involvement in the film he did say that some people do approach him and give him small amounts of money to congratulate him for taking part in the film, which helps.
As mentioned, this was a slightly unorthodox way to test the Batteries Methodology, nevertheless it does seem to demonstrate some genuine positive changes experienced by the two participants interviewed and provided a good talking tool to unpack the reasons behind changes in their energy levels. Consequently I am reviewing the possibilities that this methodology offers, whilst keeping a critical eye on the situation on the ground. So far Malawi, Temwa’s work, their inspirational staff, school children and project beneficiaries have made me realise the value of community here and the determination of people to fight for a better future for themselves.
*FYI – for more info on the Batteries Methodology please contact Harriet Jones at [email protected]
NB –full quantitative data regarding the research gathered using the Batteries Methodology will be available in my full research report
