Discuss and debate the issues that mean the most to you.
I know people want to ask about it when they meet me. They dance around it, but they can't help but be curious.
When they do ask, “What are you,” or, “What’s your background?” I answer them by saying, "I’m black and I have albinism." Sometimes that’s enough . Most times, they're still confused.
I try again: “I’m albino.” The light bulb goes off for most people once I say the “a” word.
They respond awkwardly by saying, “Oh, I went to school with an albino,” or, “I thought albinos have red eyes.” I’m just glad they know what I’m talking about at that point.
Most people know the word “albino,” but don’t know the actual condition is called albinism, which is the lack of pigment in the hair, skin and eyes.
Growing up, my mother didn’t like anybody to call me “albino.” She quickly corrected them by saying I was light-skinned or really fair. I later understood that she was in some serious denial and that was her way of trying to control a situation that was obviously out of her control.
Because of her issues, I internalized the disdain for word. Besides, when people called me “albino,” it was never in a good context. I’d only heard it in a derogatory manner. I endured a lot of teasing because of my albinism, and the use of that word stung for many years.
I’m certain the media has played a role in perpetuating negative beliefs about people with albinism. There are not many positive depictions in the media of albino characters. They’re usually deviant, mystical or otherwise freakish. Don’t believe me? Check out this list of albino characters in film. I can’t tell you how many times I’ve been called Powder!
The “evil albino” or “albino villain” can be seen throughout movies and in fiction. These images are powerful because they reinforce people’s prejudice towards people with albinism.
Not only are images powerful, but words are too. I suppose that is why I went through a phase when I insisted that people call me a “person with albinism." I wanted to put my personhood before my condition. I thought the word “albino” was objectifying. I felt very passionately about that until I met other people with albinism who referred to themselves as albinos and called each other that as well.
At first, I couldn’t understand how they label themselves with a word that others use with such malice. But when I saw how comfortable they were and how easily it rolled off their tongues, I thought it was bold.
As I became more comfortable with my albinism, I, too, began to refer to myself as “albino.” The word could no longer hurt me because I didn’t give it the power to anymore. I relinquished the painful memories and connotations of the word. It was empowering to say the least. I especially like the way people outside of the U.S. say it. They pronounce it like “albeeno.”
The use of “albino” vs. “person with albinism” remains a hot topic in the albinism community. Many feel that they don’t want to be labeled by a word that has such potential to cause pain. They also feel that being objectified by the condition is dehumanizing. Others have made peace with the word and don’t mind when others refer to them as “albino.”
I think for most people within the community it really makes a difference on who says it (another person with albinism or not) and in what context it is said. Some people might be fine with another person with albinism calling them “albino” but not comfortable with a person outside of the albinism community using that word.
Today I use “albino” and “a person with albinism" interchangeably when I describe myself. People are going to label me as they feel -- it goes with the territory. I think there is power in self-identifying. I am an albino. I am a person with albinism. I am black. I am who I am. No matter what you call me.