What is Albinism?

What is Albinism?

Albinism is an inherited genetic condition which reduces the amount of melanin pigment formed in the hair, skin and eyes. The albinism gene must be present in both parents for a child to be born with albinism, and even if the gene is present in both parents, there is still only a 1 in 4 chance the child will be born with albinism. In America, about 1 in 20,000 people has albinism. I am one of them. Prior to researching this project, I thought the occurrence of albinism was 1 in 100,000 in America. There are places in the world in which occurrences of albinism are as common as 1 in 3,000 people. Most children with albinism are born to parents with normal pigmentation and eyesight.

People born with albinism have poor vision, which is not fully correctable with eyeglasses or surgery. Irregular development of the retina and abnormal patterns of nerve connections between the eye and the brain cause vision problems for people with albinism. Further eye problems often also develop. Examples of other eye problems associated with albinism include nystagmus, the involuntary horizontal movement of the eyes (got it); stabismus, muscle imbalance between the eyes, crossed eyes or lazy eyes (got it too); photophobia, extreme sensitivity to light (trifecta!); refractive error, either nearsighted or farsighted (Yahtzee!) and other problems with the development of the retina and optic nerve routing. Perfect vision is 20/20 and legally blind is anything below 20/200. Uncorrected, my vision is 20/450. Corrected, it's 20/200. Even with glasses, I, like most people with albinism, am legally blind.

For me, the challenges of albinism are an omnipresent wave of slights, petty grievances and annoyances and deep, impacting psychological wounds, all of which will be the subject of this blog, so, happy reading! While I experience myriad, hilarious and, I assure you, very, very entertaining obstacles you will enjoy reading about related to my albinism, rarely are these obstacles a matter of life and death. In Tanzania, on the other hand, people with albinism are hunted, mauled and murdered by poachers with machetes and machine guns. These poachers sell parts of the albinos' bodies to witchdoctors, who in turn use the pale body parts to make potions politicians buy in the hopes of bringing them good luck. There's a lot of information in that last sentence, so go ahead and read it again. I'll unpack it for you by phrasing it another way. In Africa, people with albinism are believed to be magical and politicians are corrupt. In the hopes of getting elected, politicians sanction the harvesting of albino body parts by war lords, who sell these body parts to witchdoctors. The witchdoctors use the albino body parts in potions to bring politicians good luck. This is not some ancient practice, this is happening today, right now. Albinos in Tanzania and Malawi live in constant fear of being butchered, which I suppose puts my bitching about people calling me Grandpa in a slightly different context.

It's not all bad for people with albinism around the world. In the San Blas Islands, an archipelago off of Panama, people with albinism are very common among the Cuna indians. Among them, about 1 in 50 people has albinism. Albinos here are called “Moon People” because it is believed one or both of their parents stared too long at the moon during pregnancy and this lunar gazing resulted in the child being born with albinism. These Moon People are considered special in Cuna tradition, as they have the unique duty of protecting the moon from a dragon who tries to eat it during a lunar eclipse. During such events, only Cuna with albinism are allowed to venture outside and shoot arrows at the moon, specifically meant to slay the dragon.

Albinos don't get such reverence in American culture. The only positive portrayal of an albinistic person in film is a 1995 movie called POWDER, which portrays a socially alienated pallid boy with mystical powers. While I've never seen this movie and thus cannot comment on its handling of a character with albinism, the film did usher in a new era of strangers calling me “Powder” instead of “Grandpa.” Through college, it happened so often it became triggering to the point where being called “Powder” was like my own personal N word.

Most albinistic people in American pop culture are portrayed as evil. In the first LETHAL WEAPON, Gary Busey plays a person with albinism, which is pretty offensive for a number of reasons and makes about as much sense as when Tom Cruise played THE LAST SAMURAI. Busey's character, like the albino twins in THE MATRIX RELOADED, is a ruthless assassin. The problem is, no person with albinism could ever be a successful assassin because we're too fucking blind. As you'll read about in this blog, my vision is so bad they wouldn't let me volunteer for the Army, so the notion of a hitman with albinism is about as plausible as dinosaurs being reverse engineered from DNA in fossilized mosquitos only to run amuck in an amusement park. In THE HEAT, a movie which was praised for its feminism, a leading DEA official is a person with normal pigment playing a person with albinism. Not only could a person with albinism never hold this law enforcement position because of our low vision, but the character, who is explicitly identified as having albinism, is mocked and ridiculed for his albinistic appearance. Evidently, in contemporary America, you can't make fun of a person for their gender, sexual orientation, race, intelligence, appearance, class, culture, political beliefs or skin color, but if he or she has albinism, their blind, pasty ass is fair game.

While albinism only occurs in 1 in 20,000 Americans, it's not what anybody talks about when they talk about diversity. Nobody sees my blindness as a real disability and my skin color isn't seen as diverse, which I recognize is probably because my diversity only makes my skin whiter. As a middle class caucasian, obviously I've not faced the same systemic adversity as many people of color; however, I have faced adversity as a person without color. I know what it is to be mocked for the color of my skin, I know how it feels to be belittled for having a disability and I know how it feels to have the vast majority of people not really acknowledge or care about either because at the end of the day, to many, I'm just a white guy, like everybody else.

In H.G. Wells' “The Invisible Man” a scientist is able to become invisible using his own discoveries, but only because he already lacks natural pigmentation. In other words, his albinistic characteristics help him become invisible. In many ways, this is how I feel as a 36 year old American with Albinism: invisible. But rather than rampage through the city like Wells' evil albino character Griffin, I'm just gonna write a snarky blog about my experiences. Hopefully I won't say anything too inappropriate; though, in the event I do, I plan to blame any off-color remarks on my albinism.

Read on about how I learned to drive: Driver/Driver