A (Sort of) Brief History on Albinism in Film and the Media

Growing up I've had to learn to not only accept my blindness, but the very first thing that has caused it and the adversity society has placed on me and others living with this very thing. What is it you may ask? Albinism (AL-BIN-IZM.)
Albinism is a rare genetic condition that affects every 1 in about 20,000 people born each year. It is one of the most misunderstood conditions because everyone with it is affected differently. There are multiple types, but within those major types there are sub-types. People with the same sub-types are often mistaken with having another, all while trying to explain why some of us can drive with restrictions or bioptics and some use canes or guide dogs, etc. it's a whole bunch of "That doesn't make sense" and "What?" - and folks, this is why medical research is significant, vital at that.

While I could literally write a novel on all the positive and negative things we as PWA's (Person's With Albinism) live and deal with on a daily basis. How different types are physically life threatening internally and externally and so much more. This though is just meant to be a blog, so I'll try to just fit a chapter in. What, too much?

I should start by expressing just how many stereotypes surround this condition daily, or should I say the ignorance that is depicted in movies and cartoons that give people the AUDACITY to spill the " but you don't look", or "I'm so pale, maybe I have albinism too!" cards like we are being mocked. That really grinds my gears. This is when we politely respond with things like "people who have albinism don't share daddy dracula's genetics with the "piercing red eyes" trait" ted talks. All of this just because we don't play the stereotypical part, and most of the time we are still unbelieved after trying to resolve the issue with education.
What exactly are we expected to say other than, "I'm so dearly sorry my genetics didn't mean to disappoint your false accusations?"
Just as Robinson states in her book, "You Can't Touch My Hair" I to, often respond to the ongoing judgement and micro-aggressions with "That's some damn bullshit!" (pg. 11)

Anyone heard of the movie "Powder", or maybe the show "Pinky and the Brain?"
Great! Now I can better explain myself, and clear some things up.
For decades now, the media has depicted those with albinism as having pure white hair, I mean snow white, with red eyes and paper white skin. Though the paper white skin is really the only thing closest to real dipictions. In the movie "Powder" the actor who played a boy with albinism was even glistening like a Stephanie Myer twilight vampire. I mean c'mon, WHAT?! He also has magical powers because of the condition. This I will touch on just a little further down in this post.
Real people with albinism don't at all have red eyes, and although it would be BADASS to glisten like a fictional vampire, the closest thing we share to these is often very pale blue, grey or even purple colored eyes (like myself.)
There is a such thing called "White Albinism" in the oculocutaneous category type, but is even more rare than the condition of albinism itself, and those people also DO NOT have red eyes. People with Oculocutenaous albinism such as myself have and even develop some kind of pigment as they age, it could just be in their retinas, the iris of their eyes, very little in their skin, or even just a tad in their hair, you get my point. The media has unconsiderably degraded and spilled such false information about the condition (mostly particularly in movies and TV shows.)
Let's move onto "Pinky & the Brain", this was a children, family friendly cartoon show in the 90's, consisting of two rats with albinism. Although the show was fictional, it did actually shed some positive insight on the condition. Animals and reptiles with albinism are the only creatures that receive the famous "Albino's have red eyes" trait.
P.S. We prefer the term Albinism over Albino anyday, the second term is often associated with stereotyping or refering to animals born Albino.

Going back to Robinson's book, I too can relate with gradually gaining self-acceptance overtime and had "quite the hair journey." (pg. 28) Before I could accept myself while being called an "old lady" because of my very pale yellow/white hair and before knowing others with the condition and meeting a nationwide family group NOAH (National Organization for Albinism and Hypopigmentation) I went through a "let's see how many colors I can dye my hair" phase, to cover it up. Results? I had only a little bit of pigmentation in my hair (pictures will be below), and dying it black after doing lots of colors was not the best move, my hair is darker now but won't be like that forever. Yes, that is something I'm self-conscious about because of the negative responses and micro-aggressions I've been slapped with for not "looking" the part if I actually have Albinism and my hair used to be different.
Now I just tend to shave my head or pierce something when I have a mental breakdown. Works much better and when my head is shaved, natural hair is to come back, guaranteed. No refunds though, just lots of time to think about new styling techniques.

Back to the point, gradually embracing this rare natural beauty overtime has been a process that I still face and work to overcome, but society has also overtime began to accept and bring inclusiveness to others who live with the condition (i.e. Dove commercials, hiring models and actors with Albinism, etc.) which has shown just how much progress society has made in dissolving degrading, harmful stereotypes and associations.

When people think of "Albino" this is usually what is expected, stereotypical but just with

 more piercing red eyes, am I wrong?

This is "White-Albinism" also known as OCA1, in the same category of 

Oculocutaneous Albinism I was born with.

This is a picture of various shades of Albinism (yes of course 

there are more because no two people share the exact same physical traits of the condition.) This was shared by NOAH to also shine a light on what Albinism actually looks like.

There isn't a set look, but there also HAS to be a genetic diagnosis.

Here is a collage of images taken of me, all at the School for the Blind as

 I was growing up.

It is to show the slightest bit of pigmentation I've developed overtime (really

 just in my hair). You can see the almost stereotypical look on the bottom left.

To help conclude this endless story of mine, spreading such knowledge with others about this condition doesn't just help break negative associations with Albinism, but it also creates a safe zone for so many people, me included.
In certain parts of Africa, people with Albinism are murdered and separated from their families to be used for voodoo practices because we supposedly are "pure" and hold magical powers. Thanks a lot, "Powder."
 These practices include taking babies (newborns), children and even parents away from their families (it is more often multiple people from one family since this is where the highest rate of people born with the condition are), killing then mutulating them to use their bones, as well as other things. Horrific right? It's traumatizing.
Phoebe Robinison touches on multiple aspects of oppresion as well and various forms that face the black community aside from just speaking upon one physical trait in her book "You Can't Touch My Hair." Her strong, yet sassy attitude for advocacy encouraged me to do the same thing with a smaller audience in a much shorter way.
Robinson states at the end of chapter two, that the list she's written "will remind us all to celebrate black hair and black beauty no matter how it's presented. (pg. 52) I hope this very list and the one I've written has reminded and encouraged us all to not only accept but celebrate such differences the universe has gifted us with. Help us all celebrate Black, White, disabled and Albinism beauty in all their shapes and forms.