2014 - Ongoing
"There is a saying used in El Salvador that is rooted in mysticism; when the birth of a child with a birth defect is observed, family and doctors will say, "mordido por la luna" - or bitten by the moon to explain the visible anomaly. In El Salvador, there is a significant population of people that will likely never be able to receive the surgical treatment they need for birth defects and other severe physical conditions alike. The barriers to access extend beyond income and socioeconomic standing -- often surgeons will refuse treatment because they lack the specialized skill, equipment, or adequate teams to take on specialized procedures. Many of those that are able to afford their surgeries are denied them anyway; surgeons face challenges within the government in seeking funding and advocating for better equipment. These factors deeply and detrimentally affect those that need specialized surgical care in their personal lives. Many that have a distinct physical deformity or affliction are nearly barred from their societies, and are ostracized if they are not able to contribute to society in the expected ways such as production and labor. They face extreme difficulty beyond their physicality and the emotional trauma that 'being different' implies-- many are forced to travel internationally to the States or to Europe to receive their treatments. They lose their jobs, leave behind family and must find financial support to enable them to travel and stay out of their home country for significant periods of time. Those that are able to find help within their country may not make the "priority list", meaning that although their condition may be severe, if they are stable, they must wait. My work illustrates the struggles behind this lack of service for the population of El Salvador and also brings to light the resilience in the people that must fight for necessary services. Many will fall through the cracks in a societal, governmental, and political system that is designed to serve only those that are healthy and "able-bodied". While there are many factors at play here, I have chosen to focus on the people of El Salvador and their stories in hopes of providing answers to the question - what is life like with a physical deformity where help does not exist?"