This is going to have to be a much quicker comment on this subject than I’d like, but I’m swamped so it will have to do. Many of you that know me have been calling to ask what I think about the current fuss over the character with albinism in the Da Vinci Code. The National Organization for Albinism and Hypopigmentation made the news in a big way these past few days for their public statements bringing attention to the typically negative portrayals of people with albinism coming out of Hollywood.
To be honest, it was an issue that didn’t rank very high on my personal radar with everything else currently going on in my life, until, in a moment of curiosity; I surfed the blogosphere and was appalled at pretty much most of what I read from the pigmento world commenting on this issue. (Pigmento is a term coined in albinism-related chatrooms and listservs to refer to people without albinism.)
For starters, I think many people completely misunderstood what NOAH was trying to do. It wasn’t about censorship. It wasn’t about picketing etc. All they did was make the point that people with albinism, more often than not, are portrayed as evil, strange, or weird characters. If the point is never made, how will the trend ever change?
What transported the issue from something on the fringes of my concerns, to something worth blogging about in the midst of trying to get ready for the American Thoracic Society, is the way the pigmento world thinks that it’s funny people with albinism should dare to express a public opinion on the issue.
Hey, it’s a free country, and if they want to make a movie with an evil monk, then those of us with albinism that will have to live with that image for the next God only knows how many years have the right to gripe about it and present the realities of our lives as an alternative image.
Yes, we’re aware it’s only a movie. If it were more than just a movie I assure you the response from the albinism community would be much stronger than a few T.V. interviews pointing out an issue of concern.
But, we all know that popular culture influences the general society. If movies weren’t important, than the civil rights movement would have never pushed for more positive African-American characters in movies and on television shows. Now people write books and academic papers on the evolution of the portrayal of ethnic minorities in the media.
To those who make fun of NOAH, or think we’re just whining, perhaps if you took a few moments to educate yourselves about albinism and what the lives of many people with albinism are like, you wouldn’t be so quick to think you’re being clever.
Personally, my vision impairment was a much bigger point of ridicule growing up than my albinism. But, I grew up in a place where I blended in fairly well and being light skinned and having blonde hair didn’t really stick out that much. (Not to say I haven’t fielded my share of albinism-related rude comments.)
I know many people with albinism, however, who come from places and cultures where blonde hair isn’t “normal” and indeed makes them stand out. While most have supportive families and have adjusted, many have endured a lot of cruelty from their surrounding culture, and sometimes even family. In many parts of the country, and the world, there are various beliefs about people with albinism being cursed etc. Even in Kansas City I’ve been approached on the street by some religious nutter who evidently had been watching me, and decided that I was demon possessed (my nystagmus seemed to seal the deal for him) and needed to beg God to “drive the demon out.” Yes, folks, this happened at the Hen House across the street from Johnson County Community College right here in Johnson County. Because I live where I live, and have the background I have, it wasn’t a big deal. But, for many other people with albinism, these stereotypes only further the negative imagery and beliefs they’re already fighting.
Now, besides all that, I’ll take just a moment to enter a gripe of my own about the media (and as a reporter, this is sort of like making fun of your own sibling.) I’ve been trying to get press coverage about Hermansky-Pudlak Syndrome for years. I’ve pitched all kinds of angles – health, human interest, etc…and never once even gotten the time of day on this life-and-death issue from many of the same media outlets that have devoted space and time to the Da Vinci Code complaints by NOAH.
What I find particularly appalling is the compete lack of interest from media outlets in places with substantially large Puerto Rican communities – given that Hermansky-Pudlak Syndrome (especially the type most common in Puerto Rico) is not only potentially life threatening if you’re unaware of it, but it’s the leading genetic disorder in the Puerto Rican community. Why is it that despite numerous story pitches, press releases etc. to news outlets in Orlando and Chicago particularly, have we never had an ounce of interest? (New York, Chicago and Orlando have the largest Puerto Rican communities outside of the island its self. The New York media has run a number of stories about HPS, perhaps because the HPS Network is based there so there’s a better local angle.)
Hey, if you should be a roving reporter type – I’ve got a much better story for you!
To be honest, it was an issue that didn’t rank very high on my personal radar with everything else currently going on in my life, until, in a moment of curiosity; I surfed the blogosphere and was appalled at pretty much most of what I read from the pigmento world commenting on this issue. (Pigmento is a term coined in albinism-related chatrooms and listservs to refer to people without albinism.)
For starters, I think many people completely misunderstood what NOAH was trying to do. It wasn’t about censorship. It wasn’t about picketing etc. All they did was make the point that people with albinism, more often than not, are portrayed as evil, strange, or weird characters. If the point is never made, how will the trend ever change?
What transported the issue from something on the fringes of my concerns, to something worth blogging about in the midst of trying to get ready for the American Thoracic Society, is the way the pigmento world thinks that it’s funny people with albinism should dare to express a public opinion on the issue.
Hey, it’s a free country, and if they want to make a movie with an evil monk, then those of us with albinism that will have to live with that image for the next God only knows how many years have the right to gripe about it and present the realities of our lives as an alternative image.
Yes, we’re aware it’s only a movie. If it were more than just a movie I assure you the response from the albinism community would be much stronger than a few T.V. interviews pointing out an issue of concern.
But, we all know that popular culture influences the general society. If movies weren’t important, than the civil rights movement would have never pushed for more positive African-American characters in movies and on television shows. Now people write books and academic papers on the evolution of the portrayal of ethnic minorities in the media.
To those who make fun of NOAH, or think we’re just whining, perhaps if you took a few moments to educate yourselves about albinism and what the lives of many people with albinism are like, you wouldn’t be so quick to think you’re being clever.
Personally, my vision impairment was a much bigger point of ridicule growing up than my albinism. But, I grew up in a place where I blended in fairly well and being light skinned and having blonde hair didn’t really stick out that much. (Not to say I haven’t fielded my share of albinism-related rude comments.)
I know many people with albinism, however, who come from places and cultures where blonde hair isn’t “normal” and indeed makes them stand out. While most have supportive families and have adjusted, many have endured a lot of cruelty from their surrounding culture, and sometimes even family. In many parts of the country, and the world, there are various beliefs about people with albinism being cursed etc. Even in Kansas City I’ve been approached on the street by some religious nutter who evidently had been watching me, and decided that I was demon possessed (my nystagmus seemed to seal the deal for him) and needed to beg God to “drive the demon out.” Yes, folks, this happened at the Hen House across the street from Johnson County Community College right here in Johnson County. Because I live where I live, and have the background I have, it wasn’t a big deal. But, for many other people with albinism, these stereotypes only further the negative imagery and beliefs they’re already fighting.
Now, besides all that, I’ll take just a moment to enter a gripe of my own about the media (and as a reporter, this is sort of like making fun of your own sibling.) I’ve been trying to get press coverage about Hermansky-Pudlak Syndrome for years. I’ve pitched all kinds of angles – health, human interest, etc…and never once even gotten the time of day on this life-and-death issue from many of the same media outlets that have devoted space and time to the Da Vinci Code complaints by NOAH.
What I find particularly appalling is the compete lack of interest from media outlets in places with substantially large Puerto Rican communities – given that Hermansky-Pudlak Syndrome (especially the type most common in Puerto Rico) is not only potentially life threatening if you’re unaware of it, but it’s the leading genetic disorder in the Puerto Rican community. Why is it that despite numerous story pitches, press releases etc. to news outlets in Orlando and Chicago particularly, have we never had an ounce of interest? (New York, Chicago and Orlando have the largest Puerto Rican communities outside of the island its self. The New York media has run a number of stories about HPS, perhaps because the HPS Network is based there so there’s a better local angle.)
Hey, if you should be a roving reporter type – I’ve got a much better story for you!
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