UN - International Albinism Awareness Day

Mwigulu Matonange, who lives with albinism and one arm after the other was severed at 12 years old for witchcraft in Tanzania, listens while attending the United Nations conference on albinism, marking International Albinism Awareness Day, Thursday June 13, 2019 at U.N. headquarters. The conference themed "Still Standing Strong," recognize, celebrate and stand in solidarity with persons with albinism-- a genetic condition that results in the lack of melanin pigment in the hair, skin and eyes, and to support their cause for human rights. (AP Photo/Bebeto Matthews)

I was waving down a taxi on the side of a dusty road in eastern Africa.

A car stopped and I stepped inside. We greeted each other in Swahili. His name was Peter. He asked what I was doing in Tanzania. I explained that I was doing a project on albinism.

“Albinos?” he said. “I’ve heard that albinos are not really people, but that they are ghosts. I’m not sure if that’s true. What do you think?”

I explained that albinos are just regular people.

“Their bodies don’t produce a usual amount of melanin which leads to pale skin, eyes, and hair. The condition is inherited from their parents’ genes. Would you like to join the interview and help translate?” I asked.

He agreed.

When we arrived at our destination, we met Mariamu. She was a 29-year old African with white skin, yellow hair, blue eyes, two hooks instead of hands, and a perpetual smile. Mariamu detailed how she was awakened one night by a man entering her house. He brutally cut off both her arms with a machete, and stole them.

She went to the United States to receive prosthetic limbs. She uses the limbs to make sweaters on a loom. Her single biggest joy after receiving the prosthetic limbs is holding her son. She mentioned that her attacker briefly went to jail, but is out now. I asked how she felt about that.

She smiled bigger and responded, “If I meet with him, I will peacefully talk with him, and when he goes to heaven, he will be forgiven.”

Peter was quiet for several minutes on the way home. He finally looked at me and said, “Now I know for certain that albinos are people. I want to tell my friends who they are and what they have been through.”

International Albinism Awareness Day was June 13th. Like Peter, I want to tell my friends what is happening and how they can help.

Oculocutaneous albinism (OCA) is a genetic condition in which lack of pigmentation affects the eyes, skin, and hair. Only about 1/37,000 Caucasians and 1/10,000 African Americans have OCA. About 1/1,400 people in Tanzania have this condition.

Persons with albinism in Tanzania face difficulties with harmful myths, discrimination, health conditions and poverty. One myth is that body parts of a person with albinism can make people rich or successful. Leg bones can be used as metal detectors to lead to gold, hair can be sprinkled in the water to catch fish and bones can be put into charms for luck and fortune.

I met with a Tanzanian reporter who went undercover to various witch doctors pretending to be a business woman. She told me that the clients purchasing body parts are affluent people who consult with witch doctors. The witch doctors recruit uneducated and impoverished people to perform the killings. They tell the people they recruit that the presence of an albino in the community is causing famine, flood, or other problem. They convince them that they are killing a ghost and that the ghost cannot die or feel pain. More than 70 people with albinism have been killed since 2007 in Tanzania.

Additionally, myths about albinism lead to social discrimination and isolation in the family, school, and community. One myth is that sex with a person with albinism can cure AIDS. This misconception has led to girls with albinism being raped. Several people I interviewed told me that their fathers abandoned their mothers when they were born. They explained this is due to the belief that children with albinism are the result of sexual intercourse with a white man.

One woman I spoke with tearfully said, “My teacher was against me, my father was against me, the community was against me, only my mother (loved me).” These myths lead to psychological challenges and abuse.

Persons with albinism also deal with problems related to their eyes and skin. Eye problems associated with albinism include nystagmus (quick back-and-forth eye movement), strabismus (lack of ability of both eyes to stay focused on the same point or to move together), sensitivity to light, extreme nearsightedness and other visual problems. Persons with albinism often develop freckles, moles, spots, and sunburn when exposed to the sun. Some studies suggest that most Africans with albinism die from skin cancer between age 30 and 40. Lack of education about the signs of skin cancer, availability and affordability of sunscreen, and cost of transportation and medical care exacerbate the problem.

It is difficult for persons with albinism to find employment. Outdoor jobs are dangerous due to susceptibility to sunburn and skin cancer, computer jobs are difficult due to vision problems, and entrepreneurship may not be feasible if the community will not buy their products.

As one man said, “They would not touch anything I touched because they were afraid I would infect them with my color.”

I learned many things from my friends with albinism in Tanzania. First, be inclusive of those not in the majority. In my community that includes religious minorities, persons with disabilities, LGBT+ persons and others.

Second, be forgiving. As one woman declared, “Today, I would like to announce the forgiveness we feel towards those that have harmed us. We have no pain in our heart towards you.”

Her example inspires me to let go of perceived injustices from my past.

Third, be aware of what is going on in the world and help where you can.

Fourth, invite others to help.

If you would like to know more, listen to my podcast interview here: https://un-uninformed.com/podcast/albinos-in-africa.

Donate to an organization that helps here: https://www.underthesamesun.com.

Dr. Sarah Hall is an assistant professor of public and community health at Utah Valley University.

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