The Tuberculosis Survival Prize is given each year by the Tuberculosis Survival Project, with support from the Lilly MDR-TB Partnership. The prize, an annual award of USD 2000, is awarded in recognition of innovation in TB/MDR-TB advocacy and social mobilization by individuals, groups or NGOs working in the field of HIV/TB or TB/MDR-TB. During a ceremony at the 41st Union World Conference on Lung Health in Berlin, Germany (November 11-15) the prize this year went to TB Photovoice.
The TB Photovoice Project provides cameras to community members (survivors, caregivers, friends, family) affected by TB, who take photographs that help them identify and improve their communities. The photographs and their stories represent what is happening in the participants' lives and serve as a point for discussion about what can be done to change the present situation in regards to TB, adherence, support, stigma, education and related issues. These photographs and their accompanying narratives give a face and voice to TB. There are initiatives in among others Brazil, Mexico, Thailand and the United States. The Stop TB Survivor award enables the project to start up a TB Photovoice in Kenya too.
Romel Lacson, founder of the Amaya-Lacson TB Photovoice Project, was personally affected by the disease, losing both his wife Claudia Amaya and their newborn daughter Emma to tuberculosis meningitis in 2004. "The project was sort of my reaction to that," he said at the sidelines of the conference. "I did not have TB myself but my family and my wife's family were providing care of her throughout the time she was in hospital. We felt very isolated, very disconnected from the world. When Claudia passed away it turned my life upside down. I had to try to make sense."
Over the years, the various initiatives - in partnership with local organizations - gave different meanings to TB Photovoice. "They have a basic foundation for it but depending on the mission of the particular organization and on the coordinator who is implementing and facilitating it, it really takes a character of its own," Lacson says. Yet there are core aspects that remain, such as photography, using images, narrative storytelling, dialogue, group discussions and ethical use of the camera. "Part of the training is to instill a sense of responsibility of the photographer that they take pictures that don't invade people's privacy or are not going to hinder any kind of confidentiality of what happened."
Eva M. Moya is involved with setting up TB Photovoice projects throughout the U.S.-Mexico border and in Mexico. With resources of the Amaya-Lacson Foundation a pilot TB Photovoice (Voices and Images of Tuberculosis) Project in the United States-Mexican border region was started in 2006. "We immediately realized we had to do it in a bi-national fashion,” Moya recalls. “It is a border community where tuberculosis knows no boundaries, where it doesn't need a visa to travel north or south."
Two groups of persons affected by TB were formed and received training, setting up photo galleries within four months. Policy and decision makers were invited and witnessed the work of the participants, and were asked to make commitments. "One of the beauties of this methodology is that you can actually see commitments," Moya says. "Which you can follow through time with decision, policy makers and health authorities so that there could be improvement. Whether it is in the area of access of services, in the leveraging of resources, or in making services much more focused on the person and services that are free of stigma and discrimination."
Through a partnership with Project Concern International SOLUCION TB the TB Photovoice (Voices and Images of Tuberculosis) initiative now includes nine projects in Mexico. Galleries that continue to move between communities. It was followed by Nuestra Casa, a three-dimensional house that reflects the life and stories of people affected by TB.
TB Photovoice asks its participants to be critical of their own community and their reality. "We ask them to tell us what it is that they see, to explain what is happening in their lives, to indicate where the problems, issues and challenges are. And then to be able to work with solutions," Moya says. Eventually many participants become activists. "There is a lot of overcoming of fears, sometimes of embarrassment, of distress, of sadness, of actually even rage, because several of our participants were unfortunately misdiagnosed. And they sort of transform that into a very powerful experience and they say well, we need to let the larger community know. It is very powerful when the story comes from the person affected and is presented to decision and policymakers, because it comes actually from the perspective of having lived the experience."
Rachel C. Orduño, one of the first participants in the U.S.-Mexico border project, lived the experience. She was diagnosed with TB in 2006 after three years of many misdiagnoses. Her treatment lasted 9 months. Her (at that time) 3 year old niece also had active TB and six other family members were treated for latent TB. Orduño remembers feeling helpless, frustrated and angry because of the misdiagnosis. Participating in the TB Photovoice Project altered these emotions.
"For people who are going through treatment, TB survivors, it is really important to share with other people," Orduño stresses. "For me TB Photovoice was first and foremost a support group. We gave each other advice and support and direction. The activist and advocacy aspect of it came later, once we felt like we can do something about it: we can't just ask the medical establishment to take care of us, we can't expect the government to look after us, we need to do something."
For Orduño that motivation came from being a group, having people to share ideas and the feeling of having something to contribute. "Now I don't see the power differential of the medical expert and the patient," she says. "Now it is the medical professional who got a lot of training plus the persons affected by the TB experience, the experience that makes us the experts. And seeing how we can be partners in developing a lot more effective treatments, how to reach the public at large and the public services."
The project even helped diminish her feelings of guilt. "That is something else that people don't tell you, that sometimes you feel very guilty for transmitting the disease to your most loved ones," she says. "I learned that for every year that I was untreated and had active TB, I could have infected 15 other people. So I may have possibly caused 45 infections. However by speaking up now, by spreading the word that we can do something about it, every one of us, all of us who have been directly been affected by TB and every medical professional and everyone who knows their story, we can all contribute. We can all try and do our best to recognize the symptoms and just be aware that TB is out there everywhere in the world. Anyone that breathes is at risk so everyone has a moral obligation and it would be a public service to do your part to contain it."
Babs Verblackt - CNS
(The author is a freelance journalist and a Fellow of CNS Writers' Bureau)
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