"Nuestra Casa" Educates, Impresses Conference Participants
As I laid my eyes on the nearly constructed “Nuestra Casa,” I was overcome by its presence and potential. The three-dimensional, mobile house — which reflects the life and stories of Mexicans and Americans affected by tuberculosis, their surroundings, and their messages of reality and hope — took a prominent location in the Exhibition Hall at the 40th Union World Conference on Lung Health held in Cancun, Mexico, last December. Many hands, hearts and minds were hard at work assembling what would be an innovative, interactive exhibition that relied on little more than a couple of extension cords to function.
During the conference, 10 people directly affected by TB guided visitors through the modest home, typical of a U.S./Mexico border dwelling, sharing their perspectives along the way. The walls were made of wood scraps, the roof of tin sheeting. Photos and accompanying narratives expressing the experiences our TB participants faced while confronting the disease decorated the walls. TB is a disease that receives little attention compared to the sexy diseases of the day, such as bird flu and swine flu, yet TB kills close to 2 million people every year — roughly 200 people every hour. Nuestra Casa served to fulfill the social commitment to recognize the problem of TB and put it into perspective, to increase the political will to improve prevention and control of the disease, and to reduce the stigma and discrimination experienced by people affected by TB.
Thanks to the generous financial support by ACTION (Advocacy to Control TB Internationally), a multi-country project hosted by RESULTS Educational Fund, 10 TB Photovoice participants from across Mexico and El Paso, Texas, shared their personal stories and photos to visitors during the conference. The TB Photovoice Project provides cameras to TB-affected community members who take photographs that help them identify and improve their communities. Many a tear was shed as our Photovoice participants guided nearly 800 conference delegates through the house and shared their experiences, sparking discussion of common themes and exposure of the root causes of the disease. Delegates were able to jot down their impressions, commitments, and reflections on a simple piece of fabric which participants symbolically hung on a clothesline. Nuestra Casa brought each visitor a consciousness of the social realities and surrounding conditions of TB.
One TB Photovoice participant, Julia, told in Spanish the story of her 9-year-old son, Alexis, who died from TB. I could understand not only her words but grasped the true message she wanted to share by her tone, the sense of deep loss on her face, and by her penetrating gaze as she looked at each of us as if to ask, “How will you move into action with your feet now that you know my story?” She let us know that she did not want any more children to suffer from TB and did not want those affected by TB to be afraid to speak up.
Among Nuestra Casa’s visitors were top global TB officials and decision-makers. Mario Raviglione, STOP TB Partnership executive director, was moved by the experience. “We need to walk health authorities through Nuestra Casa to show where TB thrives and to prove that commitment is the starting point for curing all,” he said.
Tackling the TB problem requires action on multiple fronts. TB elimination requires increased visibility of persons affected by TB, their stories, lives, worries, concerns, vulnerabilities, and aspirations. It requires inclusion, parity, and the participation of persons affected by TB. At the same time, the problem demands sustainable and permanent lines of funding through efficient distribution mechanisms.
At the conference, I attended a session I wish all RESULTS activists could have attended! Experts from the U.S. Agency for International Development noted that U.S. funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria hinges on how Congress values the Global Fund’s efforts and successes. I felt as if they were talking directly to me, saying, “So go to your members of Congress and tell them how essential the Global Fund is for the lives of millions around the globe. If you don’t, how will they know?” I wanted to jump up and say that our RESULTS activists are committed to making members of Congress aware of the Fund and will push for $1.75 billion for the Global Fund in FY 2011. Perhaps I should have spoken, but at the opportune moment, they switched speakers! Yet, I recommitted myself to informing my member of Congress of this essential mechanism.