By Thomas Hill
The field of global health has expanded rapidly over the past decade and this has led it to be increasingly linked to the field of international development policy and practice. According to a United Nations Development and human rights for all report fifteen percent of the world or 1 billion people live with a disability and eighty percent of those live in developing countries. The cost of caring for a person with a disability is prohibitive to most families and the stigma involved with having a child with special needs is stressful, as well. With so many people suffering from some form of disability there is no doubt that it is a global health issue and warrants increased universal attention, especially as we witness high levels of population growth in developing countries like Peru.
It took an internship last summer with Awamaki, a non-governmental organization (NGO) working in Ollantaytambo, Peru, to open my eyes to how marginalized people with disabilities live and function in a third world country. As an organization working with indigenous Quechua women artisans and entrepreneurs, Awamaki promotes capacity building by teaching the women technical, adminstrative, and leadership skills. . This connects the women to global marketsall the while allowing them to continue to live in their customary ways. After spending time with these women in their villages and witnessing their daily hardships, I began to speculate about their general health and access to quality healthcare. Those at Awamaki fostered this interest and soon put me in touch with My Small Help (Mi Pequena Ayuda), an NGO which works with disabled and impoverished children in the greater Ollantaytambo area. With overlapping constituencies and entwined relations, both organizations work with many of the same families. Although these two organizations share information, knowledge about disabilities and their accompanying services in rural Peru are inadequate.
Information sharing between NGOs is perhaps an underutilized practice and will become more important when resources are stretched due to population growth. In places like the Sacred Valley of Peru where there are large populations of needy peoples, those NGOs working in close proximity need and should cultivate close relationships. A positive working relationship allowed Awamaki—when Awamaki had a healthcare team—to refer needy clients to My Small Help. Because of erratic government funding, NGOs will be looked upon to pick up the slack, thus necessitating information sharing.
With increasing numbers of disabled and needy people, My Small Help seems to have an insurmountable feat ahead of them in their quest to provide basic human rights to those living with a disability in the Ollatayambo area. The typical person My Small Help provides for has cognitive, physical, or a combination of both ailments. To add to their problems, disabilities in this area, like other third world countries, often are ignored by virtue of families being embarrassed by their handicapped child. Furthermore, although Peru has laws protecting individuals with disabilities, the country has been plagued with human rights violations committed against disabled adults and children. In her research Shana R. Cohen points out that many who are disabled are prevented from taking part in society or are oftentimes institutionalized.
An example of the hardships one goes through living in Peru can be seen with the My Small Help patient named Vilma. Vilma lives in the small town of Huilloc in in the Patacancha Valley near Ollantayambo. At 25 Vilma suffers partial blindness, along with other cognitive ailments, stays home alone for hours at a time while her single mother works to provide for them. Vilma’s problems are more than just superficial; an inaccurate birth certificate has prohibited her mother from receiving government assistance. Vilma’s life would improve vastly with an amended birth certificate, but the cost and time associated with wading through an implacable bureaucracy has proved to be unaffordable to her mother
Vilma is just one example of those who are forced to suffer the plight of being born with a disability in a developing country. My Small Help provides many services to their clients; however, money alone is not going to change the life of these individuals. As things go people like Vilma live in a society where parents feel like a child with a disability is a curse, so it will also take a great deal of education as well.
In addition to growing populations and many countries’ inability to properly care for their disabled many families lack the resources to care for their family members or they are humiliated that they have a disabled child. There should be a concerted effort to bring those with disabilities into the public sphere in order to confront the issue. More support should be funneled to NGOs in the field like My Small Help. The support should be in the form of funding for educating families on how to care for their disabled family member and funding to educate the communities in which they live. This education will come from those without a disability interacting with those who do.