By Babs Verblackt writes for Citizen News Service (CNS)
The TB Photovoice Project, the winner of the 2010 TB Survival Prize, started as a one man’s way to deal with the loss of his beloved ones to tuberculosis (TB). By now, it is touching the lives of many people around the world. They help through pictures and narratives to empower and raise the voices of persons and communities affected by the disease.
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, the prize this year went to TB Photovoice.
The TB Photovoice Project provides cameras to community members who are affected by TB. They take photographs that help them identify and improve their communities. The photographs and their stories represent what is happening in the participants’ lives . It will serve as a point for discussion about what can be done to change the present situation with regards to TB, adherence, support, stigma, education and related issues. These photographs and their accompanying narratives give a face and voice to TB.
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.
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.
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.
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.
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 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.
Rachel C. Orduno, 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.
“For people who are going through treatment, TB survivors, it is really important to share with other people,” Orduno stresses.
For Orduno that motivation came from being a group, having people to share ideas and the feeling of having something to contribute.
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,” adds Orduno.
Babs Verblackt – CNS