*This reminds me, very recently there was a study conducted on the "Kuna" language. The study concluded there there is no "K" sound in their alphabet, thus changing the name to "Guna."
"So what are you studying anyway?"
While many people are satisfied with the answer, "I am studying the Guna Indians with albinism," or even "I study very white people." I have happily had a number of people actually want to learn more. I usually hesitate to dive into a lengthy description for fear that the questioner will quickly regret their question. But if you are reading this, then I assume you want to know more.
One of my advisors in university told me to have 3 sets of answers prepared for just such a question. The first is for the people who are just asking to be polite (see paragraph above). The second is for people who want to know more, but don't want all the hairy details. The third response is an in-depth explanation of your work, for those who seem invested.
The Intrigued
I am studying the medical and social issues faced by persons with albinism amongst the Guna of Panama. In particular I am looking at how the condition is understood and accepted by the Guna community and by Panamanians in general. The study will be used to contrast the issues faced by persons with albinism in east Africa, in particular, Uganda, which is where I began my study.
The Invested
While in Uganda I learned about the issues faced by persons with albinism. Besides suffering from medical issues such as skin cancer and poor vision, persons with albinism are by and large ostracized from their families and communities in every stage of life. This issue is compounded by the fact that the social issues faced by persons with albinism can not be addressed by the government of Uganda due to the current definition of disability which its Constitution still retains. I wanted to study the Guna people because of their unique culture surrounding persons with albinism. Most reports suggest that Guna's who have albinism are accepted into society, and in some cases are even revered and respected because of their condition. The Guna might not have always understood the condition as a genetic mutation and a recessive trait that affects tyrosinase/the melanocytes of the body, but they understood that the condition is not something to be feared. Additionally, they understand that people who have albinism need to stay out of the sun, developing special allowances, such as men being able to work in-doors rather than fish. I am curious to see if there is anything translatable to the Ugandan and east African cultures that can help persons with albinism there find a niche within their own societies. Additionally, I will be looking into the efforts of organizations such as the Panama Rotary Club, who are attempting to address the issue of skin cancer among Guna who have albinism, to see how their methods compare to those of the organizations and doctors I worked with in Uganda.
Where to Begin?
As I mentioned in earlier blogs, I spent many months at home casting my net wide and seeing who would respond. I cannot stress enough the importance of networking. Something as simple as an introductory email has gained me access to some of the top experts in the field of albinism and Guna studies. Before my work in Uganda, I would never have taken the risk of calling an MIT professor from a telephone number I found on the Internet, but people are surprisingly more open to helping others out who share similar interests/
In Panama
Now begins the time where I finally get to meet these people face-to-face. Tomorrow I begin with a visit to the Rotary Club of Panama, who happens to be holding one of their regular meetings. I heard about them through their "IBEGWA project"working with Guna with albinism. I don't really know what to expect, but that is the fun of research. I may end up just sitting and listening to a meeting or I could be asked to give a speech (I am praying against the latter). The trick is to come prepared. Tonight I am writing questions (preguntas), which I may or may not get a chance to use. At the very least I will have made my introduction, and that will hopefully lead to many more interactions with this group.Saturday I have a meeting with a teacher in the city who works with Guna children teaching Guna, Spanish and English. He also happens to be Guna and has albinism.
Depending on how these meetings go, I hope to start planning my first trip out to Guna Yala/San Blas the upcoming week. I met a man and his wife at the hostel who know the area and the people well and who were very interested in my studies. Knowing what little I do about the Guna people, it is good to travel with someone who already has an "in" into the communities if you plan on any in-depth interaction.
Hopefully this answered many of the questions about my research you had. If not, I welcome comments and questions. The point of my research is to enlighten myself and others, so I would love to get any and all feedback.
Buenas Noches.
intriguing
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