I have albinism, a genetic condition that causes a lack of pigment in the skin, hair and eyes. This means I have very fair skin, bright blonde hair and blue eyes (blue, NOT red). Oh, an far from perfect vision. When I say “I have albinism.”, some people look at me funny. When I say “most people are more familiar with the word Albino.” Often a light bulb goes off. “Oh, I went to school with an albino.” Or, “My husband’s, sister’s, brother-in-law’s daughter is albino.” Many in the albinism community recoil at being called an albino. It doesn’t phase me so much, but that is a post for another day.
For me, albinism is an inconvenience. It is a pain slathering on layers of sunscreen, wearing a hat everywear and wearing sunglasses even on a cloudy day. BUT, at least I have sunscreen to protect my skin from skin cancer, I have contact lenses and glasses that help me see well enough to drive. I do not have the ultra rare kind of albinism that comes with medical complications. Nor, do I fear for my life every time I leave my house.
Since 2007, at least 53 (probably more) people with albinism living in Eastern Africa have been violently murdered for their body parts. The victims are tortured and killed by violent means as folklore often requires the killer to drink the blood of their victim to ward off dangerous spirits. The corpse is then hacked to pieces and sold to witch doctors for use in potions and salves.
I’m sorry, to be graphic, but the story is THAT disturbing.
According to ABC News, the story was broken by a BBC reporter who went undercover to try and expose the heinous crimes. It has been slow in starting, but there is a movement a foot lead by several non profit organizations including NOAH, Under the Same Sun, and Positive Exposure to shine a spotlight on these atrocities and force the governments to hold those responsible for these crimes accountable for their actions.
For more than a year NOAH has been working with ABC news on a story about albinism. The final product will air tonight on the ABC News show 20/20. There are stories of Americans with albinism, but most of the show is devoted to the crisis in Tanzania. There are preview clips here. From what I can gather this show is NOT suitable for a family audience.
I’m a little uneasy about the content of the show. For the most part, albinism is a rare and misunderstood condition. The lack of vision presents a real problem, but most of the challenges arise from our society’s intolerance of difference. I’m glad the situation in Tanzania is getting some attention. People with albinism there live a life very different from mine in so many ways. I hope that while they highlight the challenges that people with albinism face, they also show that people with albinism are not doomed to a life of suffering (at least not in the U.S.).
If course the irony of a segment about people with a visual impairment on a show called 20/20 isn’t lost on me.
Tune in an let me know what you think.