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 necessary
We knew a 3-hour intervention would not be enough to make lasting change in a community, so we ended each workshop by asking if there were volunteers who wanted to continue to work on this issue. About 15 people from each village responded. They made their own Action Plans, including one or more of the issues raised in the workshop: Reducing Stigma, Preventing Cancer, Educating Children with Albinism, and Indoor Work.
A year later we invited two people with albinism from each village to meet with members of the Tanzania Albinism Society. The question was simple: “How have things changed since the workshop?”
I can walk down the road now, without people calling me names
People now allow me to sit at a food stand with them and even eat with them
I feel safer now because I know my neighbors, and especially the village leaders, are looking out for me
Our committee argued with the headmaster and now students at the local school can wear hats, long-sleeved shirts and long pants, even though they’re not the official uniform
Children are now allowed to sit in the front row in class, so they can see the blackboard
I can now go to the local dispensary (clinic) for care; before they wouldn’t let me in because there were no nurses who were willing to take my temperature.
[You can read more significant responses from the workshops and follow-up evaluations under xxx on this website.]
Between 2015 and 2018, we trained more than 4,400 people in 63 villages.
This work was a partnership of many people and organizations: the Mennonite Central Committee, Rotary International, the Mennonite Church of Tanzania, the Tanzania Albinism Association, Traditional Healers of the Mara Region, and village, district and regional governments of Tanzania.
We are working hard to secure funding to continue this work!