In 2013 we visited the Tanzania Albinism Society in the city of Musoma on Lake Victoria, where most of the killings first began. We listened as they told us the challenges they faced, and then asked them to prioritize their needs and help us develop programs to address them. While we fully expected that Physical Safety would be the first on the list, it was third. Second was Skin Cancer, and first was Stigma and Discrimination in their own villages. They told us the most painful part of their lives was being rejected by other members of their villages. They said all they wanted their families and other villagers that they were “just people.” They also argued that this was the root cause of all their other problems: the belief that they were a curse, somehow supernatural, and maybe not even human beings, made it easier to believe that their body parts were “magical.” It also made it harder to get an education, access healthcare, and find work. “What would help?” we asked. The answer was unanimous: Village Education.
And so began a series of village workshops designed to build community understanding of albinism. We called the project Watu Kama Sisi, Swahili for “People Like Us” [link here or below]. We developed a curriculum with the goal of “Changing minds, Changing hearts, and Changing actions.” We hired local drummers to announce the workshops by traveling over “hill and dale” and pausing to announce that we were coming. We usually met in grain sheds, as they were the largest buildings available. An average of 95 villagers attended each meeting.
Change Minds: Friends and videographers Mark & Ericha Gudmastad volunteered to make an educational video for the project [link here or below], and they interviewed a Tanzanian doctor trained in Western medicine and two traditional healers. They emphasized the physical fact that albinism is inherited, and that it affects only the skin, hair and eyes; that people with albinism are born and die and are as intelligent as other people; that albinism is not contagious; and that in every other way, people with albinism are “people like us.” They also warned of skin cancer, and counseled skin protection and early treatment. Finally, the traditional healers delivered a harsh message to villagers watching: “Don’t be deceived by our brothers who tell you body parts will make your rich; it is a lie.” We were grateful that, given the profit being generated by this practice, and the violence surrounding it, they were no doubt putting their lives at risk.
Change Hearts: The video also introduces seven people with albinism from all walks of life, all with different accomplishments and challenges. The pain caused by the stigma and discrimination they had experienced was palpable, and villagers were able to get past their fears and even feel compassion for their neighbors with albinism.
Change Actions: The combination of setting the facts straight about albinism and what causes it, together with identifying with real people with albinism, were a powerful combination. Each workshop generated intense interest and many questions. At the end we challenged villagers to come up with one thing they would do differently, based on what they had learned:
I have learned I can touch an albino without catching it (as he leaned forward to place his hand on the shoulder of a man with albinism).
If my wife and I have an albino baby, I will tell her we will both take care of it, because it is from both of us; and I will also tell all our friends.
Muslims and Christians need to work together, because this is a community issue.
From today, if a witch doctor comes to this village, we will not keep quiet, we will take action.
Now I have to the care of the albinos in our village, keep them safe, and help them where it is necessa