"And this is important...why?"
EXCELLENT question.
That question that looms behind all that you do, specifically if what you do is research.
Great, good to know, why should I care?
Lately I am having trouble answering this question. I have learned SO much about the Guna people and about how albinism is understood and treated here in Panama and Guna Yala and how that has drastically changed through the past few decades. But now I am questioning what value there is in that information besides the exotic interest value.
When I mention my research people usually seem quite interested in the material. I find a lot of that has to do with the fact that many people I interact with outside of Guna Yala have little to no knowledge about albinism within the human race. I have become a good story teller. I can tell you all about people who have albinism in Uganda and people who have albinism in Guna Yala and how different those two societies treat the condition. Most frustrating though is the morbid curiosity in the huntings that recently began in the Lake Victoria region of eastern Africa. Many react with shock, astonishment. Disturbingly, they seem more entertained than anything.
After presenting my work on albinism in Uganda to a group of peers at Beloit College, a professor explained to me the idea of "death by culture." While the main point of my paper was that people with albinism in eastern Uganda have more to fear from the sun than they do from hunters, the take-away by most of the audience was "Ugandans are hunting albinos". You take an already exoticized population of "Africans" (because yes, they are considered one people by many) and you add a further unknown of "albinos". Mix in some good ol' witchdoctors and you've got yourself a damn fine interest story. And this is precisely what the media and many organizations who work with albinism have banked on. "Save the albinos! Stop the killings by their African brothers!". People seem all too eager to believe that those poor Africans are just so ignorant they hunt their own people; it's in their culture.
What is only mentioned in passing, or maybe not mentioned at all is that these killings only began in 2006 as an economic ploy by a small group of people. Additionally, the purchasers of the potions made by these witchdoctors are incredibly wealthy, paying as much as $75,000 US dollars for what they believe might bring them more fortune or win an election. They are NOT your average east African. MOST Ugandans and east Africans are outraged by the killings. We cry outrage that around 75 people have been killed by these huntings while the majority of people with albinism, a number estimated at 150,000 in Tanzania alone, will not live beyond the age of 30 because of skin cancer.
SKIN CANCER. This death could be prevented or at least staved off for another couple decades with education. With the knowledge to use, and the access to, covering clothing and sunscreen.
But people don't want to hear about that. Death by basal cell carcinoma isn't nearly as interesting as being hunted. Tragically, if people took interest, we could easily prevent the deaths of THOUSANDS of people. But what is missing is knowledge and initiative. By and large Ugandans still fear people who have albinism and many people with albinism have had no way of learning some of the basic ways to prevent skin cancer. As a result, people with albinism in Uganda and much of east Africa are socially rejected and die at an early age (but not by hunters).
The purpose of my work initially was to determine if there was something in Guna Yala that we were missing in Uganda – something that enabled the Guna people to accept albinism; something that allowed people who have albinism to become leaders within their own society rather than feared outcasts. Once found, the task would be to somehow translate that into Ugandan societies.
What I have determined is rather simple: Education and visibility. Gunas were exposed to the condition as a result of their high rate of albinism (1:145). The establishment of schools gave people who had albinism a future. Since they couldn't safely work in the fields or fish as traditionally all Gunas did, they could now become educated professionals: teachers, lawyers, and authors. This success also worked to increase people's exposure to the condition, allowing them to interact with people who had albinism in a capacity that would foster respect.
The story of how people who have albinism have gone from being killed at birth to now, being political leaders is an interesting one to be sure; but what does it have to teach us that we don't already know? The Uganda Albino Association already knows they need to educate the public about albinism and that they need to get more kids with albinism in schools and more adults into jobs.
While this blog is typically a one-way form of communication, I would love to hear from the people reading this what they see as important about this research. Perhaps I need some fresh eyes to see the value in what I do. I would hate to think that I am wasting U.S. tax dollars to learn something we already know in theory when that amount of money could have bought thousands of bottles of sunscreen, and saved a lot more lives.
