Remembering Assimwe (Albinism in Tanzania)

On the night of May 30^th, a two and a half year old little girl named Asiimwe Novati was abducted from her home in Bulamula, a small Village in the Kagera Region of Tanzania. Two men were able to gain entry into the home under the guise of needing salt to help remove venom from a snake bite.

 As the mother handed them the salt, one man grabbed her by the neck and restrained her while the other man went after her daughter Assimwe who was playing on the living room floor. The men then fled with the child leaving the mother in a horrified panic.

Why was Asiimwe taken? It is because she was born with Albinism, a set of inherited conditions that cause people to have less melanin than normal. It results in a lack of pigmentation in their skin, hair, and eyes. Their appearance is quite striking, especially to someone who has never seen someone with the condition before and especially in Africa where most people are very dark.

The only thing I knew about Albinism before coming to Tanzania was from Hollywood. People with albinism are usually portrayed as caricatures in movies. “Albinos,” which is considered by many to be a derogatory term, play the role of the strange protagonist (think the movie Powder), or a mysterious villain (think “Silas” in the Da Vinci Code). Other than what I’d seen on the big screen or the occasional headline about some animal being born with the rare condition, I was clueless.

Due to genetic factors, Tanzania has the highest rate of Albinism in the world with 1 out of 1,400 Tanzanians having the condition. Albinism is considered a disability because of the lifelong physical impairments that affect a person’s vision and skin, which in turn can impact participation in daily life. What’s more is that the condition is heavily stigmatized. People with Albinism are often referred to in prejudicial terms and ostracized, making it even more difficult for them to survive socially and economically in a country where relationships are currency and many people live hand to mouth.

Although Tanzania has made significant progress in promoting education about Albinism there are still problems. Despite some people believing that Albinism is a “curse,” there are those who believe superstitiously that body parts taken from someone from Albinism can be used in witchcraft to create potions, amulets, etc., that will provide them with vast wealth and power.

This sounds crazy and it is, but I’ve learned from personal experience since living in Africa to not underestimate the sway that witchcraft has in this culture. It permeates almost every aspect of business, relationships, and societal constructs. It usually isn’t talked about openly, but it is always there. My wife often sees keloid scars from burns that witch doctors have given to children with disabilities to “heal” their condition. Despite continuing education and a mountain of government advisories, witchcraft and superstitions surrounding people with Albinism are not easily removed.

On June 17^th, the body of Asiimwe was discovered in a bag that had been tossed into a roadside culvert. Asiimwe had been brutally murdered and was missing both hands, eyes and tongue. Most likely, the murderers wanted to sell the body parts to wealthy buyers in East Africa who have been known to pay tens of thousands of dollars (a fortune here in Tanzania), to assist them with their political or business ambitions.

Tanzania is coming up to its election year in just a few months. Several people I have spoken to are concerned that there could be more murders as politicians vie for influence. The local community of people with Albinism is terrified, and rightfully so. This is the second known murder of a child with Albinism this year. It is suspected that there are other murders that go unreported due to the fact that they often take place in rural areas where there is less government protection and people are afraid to speak up.

If you want to support efforts to help people with Albinism and to help eradicate the discrimination and violence against them, please consider checking out these two organizations:

1) www.underthesamesun.com

2) https://www.standingvoice.org

As a footnote, we will now be featuring Albinism as one of the main agenda topics at our upcoming disability advocacy and awareness conference. It has the potential to the be the largest conference of its kind in Tanzania. After what happened to Asiimwe, bringing people together with disabilities and promoting human rights seems to be even more important (and more urgent) than before we started.

 Planning the Pamoja Conference