Over the summer of 2016, I conducted an independent interdisciplinary research on Albinism in Ukerewe Island of Tanzania which is nicknamed 'Africa's Albino Island' for the large number of PWA living there (see map for location). My research was part of the IB program's compulsory Extended Essay which is a formal research report required for graduation however more than that, it was my chance to explore my passion of social activism. I had already participated in the UN conference on albinism and had unearthed a lot of the stigma encountered by this vulnerable group that I had not ever known before despite being born in Tanzania. I was curious to understand why there was a higher ration of PWA (people with albinism) in Tanzania specifically and how the mystification of albinism has evolved over the years post-NGO awareness campaigns. I collaborated with the Ukerewe Albinism Society and Standing Voice to travel to Ukerewe Island where I spent approximately two weeks interviewing and conducting personal visits to most of the residents who had albinism. Not only did I learn about the different entangling aspects of my hypothesis such as the major influence played by tribal intermarriages and the occurrence of albinism on the island but I also built a meaningful connection with the local community of PWA who helped me discover that this was my calling: I loved research and I loved social activism, I knew I wanted to pursue these two areas of studies through public health or a similar field. However I also learnt how challenging it can be to conduct interviews when you are emotionally invested with the community members. I often had to re-visit sites since I was unable to hear the stories some PWA shared with me that included the tragic loss of their family members, abandonment or amputations. Following my research experience, I wrote for London School of Economic's Amnesty International group, who published my article titled 'Imprisoned by my skin' on their website. I also decided to look into studying genetics at university after being awarded the International Leaders of Tomorrow Award by the University of British Columbia. Ps: I've attached only the abstract to my research as an accessible document since I'm still attempting to publish my work however if you would like to view the document in full, feel free to contact me. |
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