How is the Research Going?

...An excellent question, to which I know I have given some unsatisfactory respuestas. So let's try it here.

As I explained to one friend, research is like trying to move a big boulder: I'm pushing my project and throwing emails left and right, and starting to get some budging, but it takes a while to get the metaphorical rock going. Within the next few months I expect it to feel something like this.

Method
Right now, my method is to email people and organizations that have any tie to, or might have any interest in, my project. I explain, in Spanish, that I am a Fulbright researcher (that's right, name-drop!) from the U.S. who is here to continue a project begun in Uganda on persons with albinism. Early on I name-drop mutual contacts or high profile people I have spoken with who this person may know. Just to add to my legitimacy, I will usually include a link to the paper I published on albinism in Uganda, and a link to a spanish blog written about my work (The blog is a translation of an article originally written in english by Barry Comer).


The purpose of this email is to hopefully score a face-to-face interview. I am currently afraid of phones because mine has a poor signal and I pay by the minute. Additionally, it is VERY difficult for me to understand Panamanian spanish when I cannot see the person (or more likely, when they cannot see the confused look on my face that is universal for, "Slow down and please pronounce all of the words in their entirety!").

The Meetings
The meetings I have had are partially informal interviews, but mostly just a continuation of the introduction process. Through these interviews I get a vague idea of what the person's expertise and relevance to my project will be plus their personal understanding of the issue. It also allows me an opportunity to employ the method of "snowballing". This is a term in research that essentially is me asking, "So who else can you get me in contact with?"

The Contacts
Rotary Club: I began my face-to-face meetings by attending a meeting for the Panama City Rotary Club who is currently working on a project entitled Ibegwa, that addresses the medical needs of Guna's with albinism. This meeting led me to some very helpful people, but primarily to...
Dra. Gioconda: The Good Doctor, as I am now calling her, is a dermatologist who has been working with Guna's with albinism for decades. She has graciously welcomed me into her home and will hopefully be allowing me to assist her with her work in San Blas, Guna Yala. Additionally, she has put me in contact with some of her friends, namely...
Fanny: Fanny is an Guna activist for environmental and women's rights. She also has a granddaughter with albinism, which makes her personally interested in the social and medical issues surrounding the condition. Fanny has met with me and spoken at-length (and in-spanish) about the issues that Guna's who have albinism face beyond medical concerns. She and Dra. Gioconda are working on putting me in contact with Diwirgui Anastacio Martinez, the head of the local organization, SOS Albino.

Awiber: Awiber is a Guna man with albinism who manages a school for Guna kids in the city. Originally I got in contact with him through a woman by the name of Elisa Julia, who has worked extensively with Jeambrun Pascal, the only person I know so far who has done an extensive investigation into Guna's with albinism.

Captain Kevin: I met the Captain while staying at Luna's Castle. He heads sailing tours in Guna Yala along with his wife. I got to speaking with him about my research and it piqued his interest. He has many connections with different Guna communities and he has offered to take me on a tour of the less touristy islands where I would get to specifically speak with people who have albinism and would get to talk to the Guna about spending extended periods of time there.

Importance
It is critical that when I go into the Guna communities I have a sort of ambassador to vouch for me. That is why making these connections is so important. I can't just show up in Guna Yala and expect anyone to want to talk to me. Kevin has a long history with these communities, as does Dra. Gioconda, even though they are both Wagas, or outsiders. Awiber and Fanny are both Guna, and so have connections to other communities as well as different insights.

Preliminary Results: Contradictions
I obviously have nothing definitive to say, but already the informal interviews have been enlightening. I have two different opinions regarding the social aspect of albinism. Awiber and Captain Kevin both remarked about the seamless integration of persons with albinism into Guna society. Sometimes their condition even grants them a preferred status in society. Meanwhile, both Dra. Gioconda and Fanny tell me stories of ostracism and familial rejection of persons who have albinism. This mirrors the information I found in my preliminary research before coming to Panama: whether or not persons with albinism suffer any social rejection varies greatly depending on the author. However, there is agreement that before the mid 1900s, the killing of babies with albinism was commonplace.

The Big Questions
These preliminary interviews have led me to 3 major questions:
1. What changed around the mid century to end these killings?
2. How MUCH changed regarding the Guna acceptance of this condition?
3. Why is there such a contrast in opinions regarding #2?

More and more this paper is becoming anthropological, however, there will still be a political aspect of the study. As a comparison to my paper on Uganda, I must determine whether or not the condition of albinism is considered a disability and whether or not there is a need for such categorization under the law.

Thank you all for your interest in my work. It is wonderful to be able to share my interest with so many people around the world.