Writing Again

Through this experience in Panama, I have found myself less and less inspired to blog, as I'm sure you have noticed. I apologize to those of you reading, and I am thankful that somehow I have still managed to hold your interest in some way.

This week I am beginning the process of writing a paper for an anthropology journal called Interventions. The journal is looking for submissions about disability and colonialism. This seemed a fitting topic for my latest research. My original publication on albinism argued that the condition should be considered a disability in Uganda according to the modern, social definition of disability, which takes into account society and environment. My work in Guna Yala has been looking into the history of albinism and how that condition has been understood from before colonialism until now. What a perfect way to marry the two subjects.

The idea of the paper will be to explain the importance of understanding albinism from a disabilities perspective. From my experience, traditional lenses used to study albinism, such as race theory or genetics, fail to encompass both the medical and social implications the condition has on the individual. I have also found issue with many of the anthropological and journalist writings on the subject of albinism, particularly in Guna Yala. These writings tend to be one of two extremes. Many romanticize the ancient Guna beliefs surrounding albinism, and minimize, if not completely ignore, how those beliefs prevented people with albinism from fully participating in their own society. Contrastingly, other writings vilify the Guna people for their past practices of infanticide against persons with albinism and people with disabilities, without explaining the mentality and societal reasons behind such practices.

This paper will be the first to present the history of albinism from a perspective of disability. I believe it will help others understand Guna people with albinism throughout history, not as a foreign and removed case study of the past, but as people with whom we can relate.

Family of Alejo and Lucianna of Ustupu
Taken By Rick Guidotti, Positive Exposure

So far I have an outline of the paper and a few segments written. I'd like to share a few quotes from the paper to give you a summary of its eventual contents.

"The Guna people of Central America have one of the highest rates of albinism in the world. Around the world, the condition of albinism inspires a fascination among humans that has manifested in a variety of societal responses throughout history, from ostracism to divine reverence." 

"From colonialist times, continuing to today, studies on albinism have focused on the larger implications the condition has on race and genetics. But how do the people most directly affected, e.g. Gunas, and especially Gunas with albinism, understand and deal with the condition? And how has that changed over time?" 

"Over several hundred years, people with albinism faced varying degrees of disability within their society as a result of the changing social interpretation of the condition. While the medical condition has not changed, those born with albinism have faced incredible obstacles to life-participation. The social disability of albinism among the Guna was exacerbated by colonialism but has since been rendered practically non-existent by internal efforts and neo-colonialist influences. Through the history of albinism in Guna Yala, Panama, one can track three significant understandings of the condition within Guna society, which have determined its level of disability."

Overall, I want to present a perspective of the Guna as an indigenous culture which I believe is sadly overlooked by many foreign writers:

"Guna people are not a helpless society that has bended and folded without agency to the demands of external forces. Instead we must look at them as a culture that has molded itself in reaction to experiences with their environment, which include, but are not entirely determined by, interactions with colonialism and neo-colonialism."