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I'm not evil

I am not “evil.”

I am not a “freak.”


I am not your literary device.

I need to vent. Please indulge me.

I am not possessed by the devil. I don’t have magical powers and I’ve never killed anyone. I don’t dwell in caves (although my eyes are sensitive to light.) Lastly, I can’t conduct electricity.

I am a person with albinism (HPS type 1 to be specific).

Instead, I go to work every day. I pay taxes and vote and participate in my community. I spend many, many hours doing volunteer work. I hate housework and love to paint, mostly watercolors and acrylic. Just like everyone else, I go out with friends, go grocery shopping and although I never actually buy lottery tickets, I still dream about what I’d do with a million dollars. In short – my life is ordinary.

But these myths about albinism do affect me – even if they do sound outrageous and bizarre to the sensible person. Just a few weeks ago a couple of teenagers going down Metcalf yelled “Ghost Freak” out their car window at me. Last year someone claiming to be a devote Christian came up to me near Homers, asked me if I knew Jesus, told me my eyes proved I was “possessed” and told me he thought he could heal me.

Today I’ve got a thick skin about such events. I shake my head and wonder where these people come from?

Last year many of us with albinism were greatly offended by the movie The Da Vinci Code and it’s portrayal of the evil monk with albinism. We were offended when we weren’t laughing at the idea of a person with albinism being an assassin. Most of us with albinism are legally blind and couldn’t shoot straight if we tried.

Today I learned yet another film maker is busily at work on another project linking albinism with evil. And this guy is doing it not too far from where I live.

His name is Sean McEwen and he’s working on a film called “Albino Farm” based on a legend from southern Missouri.

There are many versions of the legend ranging from this beautiful section of Missouri once being home to a secret hospital engaging in horrific genetic scientific experiments, to the farm being a kind of “lepers colony” for people with albinism more than 100 years ago, to the farm being haunted by the ghost of a former caretaker with albinism believed to be an axe murderer. None of the myths are true, of course.

But Mr. McEwen’s film is capitalizing on the myths by creating a horror film and calling it “Albino Farm.”

A summary from the Web site of a horror fan magazine called Fangoria describes the story line as follows:

McEwen will direct and produce (the latter with Joe Anderson, Rachelle Ryan and Barry Curtis) from his own script, which follows the plight of four college students who, while exploring the Ozark Mountains for a midterm assignment on rural America, come face to face with a community of cave-dwelling redneck genetic mutations.

Don’t get me wrong. Perhaps it’s my journalism background, but I’m big into protecting freedom of speech – even speech I personally find horrid, offensive and even immoral. I’ve spent time in places where people don’t have the freedom to be stupid and ignorant, and the price of limiting the idiots of the world just isn’t worth it.

But freedom of speech works both ways.

Mr. McEwen can make his film. But we, as people with albinism, can shout to the rooftops about how we feel about the idea of “a community of cave-dwelling redneck genetic mutations” being associated with the term “albinism.” We can also speak our minds about the businesses that support a project like this as well.

I must confess. Last year when the flap over the Da Vinci Code was at its height, at first I was leery to get into the fray. To be honest, it wasn’t that I didn’t care about perceptions regarding albinism – it was that the type of albinism I have is potentially life threatening and I felt I had more important things to worry about like how to fund research and find a cure.

About the same time, however, I started using “Google Alerts” on Google’s news pages. Among the search terms I selected were the terms “albinism” and “albino.” Suddenly, my e-mail was full of “google alerts” from blogs writing about the National Organization of Albinism and Hypopigmentation’s (NOAH) objections to the film.

Most of the entries made fun of those of us with albinism. We were equated to things like the Society for Left Handed Dentists or other such made-up entities.

But we’re not made up. We’re quite real – and after reading blog after blog of this sort of dribble, I was singing NOAH’s praises for engaging in the battle. The fact that so many people couldn’t understand why this was offensive was only more evidence of the complete lack of understanding of albinism and how many of us have been treated over the years.

Media history is full of protests about how people have been portrayed. Take, for example, many of the early portrayals (and some of the current ones) of African Americans. Just as people stood up to black face and negative stereotypes, so must those of us affected by albinism speak up.

Look what a fervor was created over using the terms "nappy haired hoes" just recently? Why do people get why that's offensive, yet are totally lost by why I might find being constantly portrayed as "evil" offensive?

It is possible to create a scary horror flick and leave people with albinism out of it. Just use a little imagination for a change.

Mr. McEwen isn’t alone.

You’d be shocked at the number of “google alerts” I get from blogs where writers are either thinking through, or actually using their blogs to write stories that have characters with albinism. I could make a career out of trying to contact and educate each of them. I simply don’t have enough hours in the day. At least 99 percent of the time a character’s albinism is being used as a sort of literary device to set them apart from society – to make them seem weird or you guessed it, evil.

I’m sick of it.

I am sick of albinism being used by those who will never have to live with the consequences of their work.

Check it out for yourself.

Here are a few links:

The Albino Farm movie site:
http://www.albinofarmthemovie.com/

The Fangoria Web site article about the project (with lots of names of the movie’s supporters if anyone would like to reach out to them and try to educate them about what they’re doing.)
http://www.fangoria.com/news_article.php?id=3650

Some information about the real farm – check out the links on the lower right side:
http://www.undergroundozarks.com/springlawn.html

And lastly, the guestbook for the film if you’d like to leave a note for the film’s creators:
http://www.foshomed ia.com/advancedg uestbookaf/


Comments

Anonymous said…
Thanks for the telling us about this file. I wonder if this is given as much attention by the media as is/was the Imus story, that the movie would be scrapped.
Mashawna said…
Wonderful writing Heather! You make us proud.

Last I checked, that link to the guestbook was down. Maybe we hit a nerve.

Mashawna

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