Monday, June 9, 2008

When Disability is a Death Sentence - Literally

In the most accurate sense of what disability means, skin color is not often an issue that jumps out at us from the news media. While we still live, unfortunately, in a world where skin color can often lead to prejudice, oppression, and even abuse, these evils are rarely provoked because of "skin color disability."

However, there is at least one instance where skin color does mean disability in the medical sense: Albinism. People with albinism inherit a genetic disorder characterized by the presence of little, if any, melanin and other skin pigmentation in their skin. They are especially susceptible to severe skin damage; most often skin cancer from exposure to the sun. Many have characteristic vision problems.

A medical disability, no question.

However, albinism is often also a difficult social disability in societies where physical appearance can mean the difference between being included or excluded based on a person’s physical characteristics.

Such is the case in Africa and many other developing countries, where people with albinism are seen, depending on who you are talking to, as either a curse or a blessing. Either way, Africans with albinism lose.

Yesterdays New York Times carried a heartbreaking story from Tanzania documenting the increased murder of Tanzanians with albinism because their body parts are prized for witchcraft potions.

Disability as death sentence.


Difficult enough that you live in a part of the world where your life expectancy is pitifully short (even by African standards) because there’s no money for sunscreen lotion (to say nothing of no education on how to manage the condition).

Difficult enough that your very visible medical condition marks you not as a human being, but often as the ingredient of some allegedly magic brew.

Difficult enough that you are an economic prize – but only after you have been mutilated or killed for your precious body parts.

Hats off to the Tanzanian Government, which has acknowledged the problem. They’ve taken some very aggressive steps to combat this horror – police protection, and the appointment of a person with albinism to the national government, for example.

The Tanzanians could go much further, though. 

How about the Tanzanian Government continues its good-faith efforts by signing the newly ratified UN Convention on the Rights of People with Disabilities? This ground-breaking international human rights agreement was meant to address exactly this kind of disregard for human dignity.

Let's hope it does so.

This sad and horrific story, at the very least, reminds us that we obviously have much work to do wherever disability prejudice is found.

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