What is albinism to you?
Albinism is just how I was born, how my roll of the dice ended up. It’s an inherent part of myself that can never be removed. Like having curly hair or being bi, it’s just something I had to learn to live with because there is no alternative.
Do you have a parent with albinism?
No, but my grandpa remembered a cousin somewhere deep in my family’s past who was albino
What was the moment you realized you looked different to other people?
I remember hearing “why are you so white/pale” as far back as kindergarten. It didn’t help that I needed an eye patch for about a year back then too, making me look even more different. Also not helping, until I was about 13 I wore these thick, plastic sports glasses. They were nearly indestructable but they also really stood out.
How do you feel about the word “albino”?
Indifferent I guess, whether I like it or not that word is here to stay
Do you consider albinism a disability?
I see it as something that would’ve severely disabled me if I was born in the wrong time and place. I’m extremely blessed to have access to sunscreen, UV clothes, widebrim hats, prescription glasses and sunglasses, and excellent doctors. My childhood eye doctor was a saint, he spent over a decade working on my vision and prescriptions. He brought me from more than legally blind when I first saw him at 5, to good enough eyes to get my drivers license at 16. All of these things allow me to live a relatively normal life and avoid sun damage to my eyes and skin. The most recent reminder I had that albinism can still be disabling was a few months ago. I was driving home from college and a lense popped out of my glasses. I didn’t have my tools to fix it with me and was near the halfway point. I ended up having to (illegally) drive over 2 hours at night with no glasses but thankfully I made it safely.
Do people judge you because of the way you look?
Yes but not as much as most albinos. I’m blessed here in two ways. The first is that ethnically I’m a mix of Celtic and Scandinavian, I would’ve been pale even without albinism. The second is that my specific type of Oculocutaneous albinism isn’t the severe form most people imagine when they think of it.
Do you have vision problems?
Yes, with glassss my vision is about 20/40. I feel like I’ve gotten used to it though and my brain is good at compensating for it. I still struggle to see details from far away but it’s usually not a problem. I always make sure to sit in the front rows of every class I take, I can’t read anything on the board past the second or third rows.
What are things that are harder to do because you have albinism?
The first one that comes to mind is being outdoors and in nature.
What are your thoughts on representation of albinism in media, e.t.c?
I almost never see us depicted in media, and when we are it’s usually negative, the “evil albino” trope. The most recent example of albinism in media that I can remember is the 2020 game Crusader Kings III. Albino is one of many traits that characters can have in this game, from the CK3 wiki “+15 natural dread, +10 same trait opinion, -10 general opinion. With their white hair and red eyes, this character strikes fear in many.”
I’ve always imagined albinos filling the role of shamans, priests, and oracles in fictional settings.
What effects does albinism have on your life?
On a positive note, I always have an easy answer to “introduce yourself by telling us your name and a fun fact about yourself.”
How does albinism affect your love life?
I don’t think it has, or any effect has been slightly positive. My ex girlfriend from high school thought it was cool that im albino, and so does the guy Im with now.
Have you lost opportunities due to albinism?
Usually no, I was stubborn when I was younger and refused to let it hold me back, which at the time also included things like sunscreen and long sleeves. The result was many severe sunburns and skin damage
How common is it for you meeting other people with albinism?
I’ve never met another albino in real life
What stereotypes about albinism do you not relate to?
I don’t think I’m evil
How did you start to embrace albinism?
I guess it just wore off over time, being albino fell into the same catagory as being right handed in my mind.
Have you been able to fully embrace albinism?
I think so, more an acceptance that I would waste time and energy worrying about something that’s outside my control
Do you sometimes wish you didn’t have albinism?
I used to, but now I don’t want to worry about something that can’t be changed.
What are cons of having albinism?
The sun is our biggest enemy. I can’t leave my house during the day without sunglasses. My risk of skin cancer is also much higher because of how unrpotected mine is. Im also always at the mercy of my glasses breaking.
What are pros of having albinism?
I can’t think of any pros unless you’re from a place like Japan where paleness is a sign of beauty.
What are the biggest misconceptions about people with albinism?
Most people see albinism as an all or nothing affair. Either you’re a full blown, white hair and red eyes albino, or you’re not. Im fortunate to have a milder form of albinism that most people have never heard of. My eyes are blue and my hair is light blond, colors that can occour naturally in people without albinism. I think many peoples’ ideas of what albinism looks like comes from zoos and state fairs showing off albino mice, snakes, turtles, and other critters. It’s a strange feeling for me meeting an albino animal, it’s like we have this subtle bond and understanding not normally shared between humans and animals.
What are facts about albinism?
My specific type occours in about 1/10,000 Africans and 1/40,000 non Africans. I somehow ended up being that one in 40,000
What are things to NOT say to people with albinism?
Please don’t ask us why we’re so pale. My skin is not capable of tanning and I would damage it if I tried
Do you love or hate having albinism?
Between those two words, I love it. It’s still an interesting life and I feel like I’ve made the best of what I was given. My eyes may not be good, but Im still fortunate they work at all.
Share your experience as a person with albinism.
My experience is different from most albinos because of the form it took. It was sometimes frustrating to not be percieved as albino, and to have my vision and coordination compared to those without it. When I played soccer in middle school I wasn’t great at it, never fast or quick enough to be a striker. I played mid and defensive usually and actually got pretty decent at it. Unfortunately there were still times I’d mess up because of my vision or depth perception. I felt like someone who was just sloppy and uncoordinated, rather than someone with misrouted optical nerves, poor eyesight, and extreme sensitivity to bright lights caused by an albinism that most couldn’t see.
(Someone sees you in real life, it’s obvious that you are, but they are asking ): “Are you an albino?” Reply savagely.
“congrats, you’re the first person to ever guess Im albino” (not even sarcastic since it’s not immediately obvious im albino)