"Stigma and secrecy around HIV/AIDS is keeping transport workers from getting tested and seeking proper treatment in Kenya."
This multi-month storytelling programme involved Kenyan transport workers, AIDS clinicians, and union members listening to and telling stories about HIV and its impact on their lives. In 2009, the International Transport Workers' Federation (ITF) came to the consulting organisation Narativ because they wanted to mainstream HIV/AIDS awareness, build knowledge, increase access to treatment, and decrease secrecy and discrimination by strengthening the collective voice of transport workers. The behaviour change communication (BCC) programme was designed to empower transport workers, who have great vulnerability to HIV, to speak out openly about the disease and be ready to take action on their own behalf, consciously altering structures of inequality, subordination, and isolation.
The Narativ strategy was to conduct an assessment of the cultural, social, and political context of HIV infection, as well as the workshop participants, and to provide a follow-up strategy to guide the continued use of the Narartiv Listening & Storytelling Method. Specifically, the process occurred in 4 distinct phases:
- Preparation for entering the field - This involved selecting a union representative who could (i) help to identify candidates for the workshops and to identify subgroups which would be trained in Narativ's storytelling methodology and ii) coordinate logistics in Mombasa. It was very important to mobilise whatever HIV advocacy was already in place within the transport sector.
- Ethnographic assessment - This involved individual interviews and focus groups and observations to select participants and to gather information about the cultural milieu in which the workshops were to take place. "At a meeting in which the storytelling project was presented to approximately 50 union officials, Simon Sang, General Secretary of The Dockworkers' Union in Mombasa stated: 'The worst opportunistic illness is stigma. People need to understand that everyone is susceptible to this disease'. Sang referred to Francis Rua, who had recently told his story in public. 'People were getting moved', stated Sang, 'They were in tears, which means that they were getting the message'. He concluded that 'storytelling can make the biggest impact, even more than the ARVs [anti-retrovirals]"
- Individual story workshops - Narativ used its 1-day workshop model and offered it to 4 separate groups in 4 days in Mombasa, Kenya: truck drivers and dockworkers who are stigmatised as conduits of HIV, members of an HIV-positive support group, doctors and nurses at the Kenya Port Authority clinic, and members of the dockworkers' union and the ITF.
- Collective story ceremony - Narativ brought each group together after they experienced the Narativ Listening & Storytelling Method methodology and created a witnessing ceremony: a large circle to share and listen to stories from diverse voices using the Narativ training. During the ceremony, each of the 4 groups practiced what they had learned in the individual workshops by listening to the real life experiences of the others.
Video was used as means to create an "immediate" advocacy tool. In the story workshops, the choice to tell their story on video was offered to the two most heavily stigmatised groups: the truck-driver/portworkers and the HIV+ support group. In both cases, video was presented as an opportunity for participants to "speak for themselves", to exercise their own voices, and to expand their capacities for personal and collective agency by describing their own experiences.
HIV-positive transport workers in Kenya built upon their training in the Narativ methodology and formed USAFIRI (which means "mode of transport" in Swahili). This is a network that brings together a diverse group of union members who are committed to sharing and listening to each other's stories and spreading the awareness of HIV/AIDS in their communities. "We go where people are and talk to them in their own language. We build trust and they listen to us." The USAFIRI Kenya support network is now being replicated in Uganda, Ghana, and other countries.
The storytelling model trained participants in providing detail about what happened in the workshops - facts which enabled affiliates in other countries to learn about the process and the outcomes.
In the words of ITF: "Stigma and the resulting actual or feared discrimination associated with HIV and sexually transmitted infections (STIs) have proven to be the most difficult obstacles to effective HIV prevention and care programmes and create an ideal climate for its further growth. HIV related stigma arises mostly from fear and lack of awareness and knowledge about the disease and/or hostility and existing prejudices about the groups most affected by it. All these factors make vulnerable people even more vulnerable to HIV infection. Stigma prevents many people from negotiating safer sex, taking tests for HIV and other STIs, disclosing their status to their partners or seeking treatment. HIV positive people face even more stigma and discrimination, and in many cases there are severe violations of human rights, including the right to work."
Organisers say that the stigma reduction storytelling encouraged voluntary disclosure. One USAFIRI member noted: "It became easier to convince the workers to be tested because they saw that treatment worked, and knew the union would protect them from discrimination if they disclosed to their employers."
An evaluator stated: "The achievement most consistently reported by the unions was the fact that the workers are now prepared to talk, to listen, and finally to take action to reduce unsafe behaviour and take up treatment opportunities."
In the words of organisers: "Feedback from participants reinforced our conclusion that by sharing HIV/AIDS stories in public, there is a purposeful enactment of the message that the disease belongs to everyone. Despite their differences, all participants are connected by virtue of their identities as transport workers and as Kenyans. As one truck driver stated, 'When you talk about HIV, you become closer to people and build a community'."
Email from Brett Davidson to The Communication Initiative on January 30 2013; Narativ website, February 1 2013; ITF website, February 1 2013; and "Storytelling Project to Combat HIV/AIDS Stigma and Secrecy" [PDF], accessed February 1 2013.