What is albinism to you?
Nothing much, just a diagnosis. Sometimes its a cool party fact I use in introductions.
Do you have a parent with albinism?
No
What was the moment you realized you looked different to other people?
My albinism is mild, so not too often. I guess when people pointed out my eyelashes are white.
How do you feel about the word “albino”?
I know some people find it offensive, but I kind of like it. I never really got on the People with albinism bandwagon. To me its kind of cool, sets me apart, and most people think albinism in animals is pretty cool, so when they hear that I have it, they find it interesting. I like calling myself an albino. Family and friends are welcome to do so as well.
Do you consider albinism a disability?
Not really. I forget about it ninety percent of the time, and its rarely stopped me from doing the things I want. Sometimes I use it because its a convenient shortcut to explain what’s up with my eyes, but to me it isn’t.
Do people judge you because of the way you look?
No, generally I get compliments, especially from people at hair salons who think my hair is pretty or my eyelashes are cool. I’ve had my eyes complimented before too, so no one has ever judged me negatively for the way I look .
Do you have vision problems?
Yeah, I think that’s a requirement. Strabismus, astigmatism, foveal hypoplasia and nystagmus to name a few of the issues. My acuity is 20/100 and 20/80 corrected.
What are things that are harder to do because you have albinism?
Mostly just reading at distance. I’m not great shakes at catching a ball either, but I never practiced so, that might be my fault. Oh putting on makeup sucks which is both a visual thing and because they don’t make shades for my skintone or eyelashes.
What are your thoughts on representation of albinism in media, e.t.c?
I have no problem with it. I know a lot of people are mad because albinos are always portrayed as the evil protagonist, but tbh, who wouldn’t want to be a villain with a cool lair and a death ray. If this is a stereotype, I am the reason for the stereotype. Sign me up for albino antagonist Conn because I am there. If anything maybe mention the vision problems more often, its not just an aesthetic, it comes with issues, so that might be the only thing.
What effects does albinism have on your life?
I hate the sun and I can’t drive so I have to use public transport, but plenty of people don’t have a car so that’s not really a big deal for me. Oh, I also have to sit closer to the TV but I don’t mind that so much.
How does albinism affect your love life?
I don’t have a love life, and never have, so I can’t give much on this one, but the rare person who is interested in me doesn’t seem to mind or care, so I don’t think it affects it at all.
How does albinism affect your career?
Ok this one kind of sucks. I have lost out on jobs because of albinism. Especially ones that require a license. There are a lot of things the government has decided I can’t do , which I know I can do but they don’t care. So yeah I probably won’t ever have my dream job, but I’m over that.
Have you lost opportunities due to albinism?
See job question. I tried to join the army twice, but it didn’t work. I don’t know if that is an opportunity I missed but it has cut off some paths for me moving forward.
How common is it for you meeting other people with albinism?
When I was in college I saw one person with albinism and met one. So in the wild I have seen one and talked with one, but otherwise the only other place I have met people with albinism is at locations specifically geared towards people with visual disabilities.
What stereotypes about albinism do you not relate to?
I have never heard any? Except for that we all have white hair and red eyes. I have blond hair and amber eyes, so I guess I don’t relate to that one, but otherwise I don’t know if there are any stereotypes. Maybe I am just out of the loop.
What stereotypes about albinism do you relate to?
Again I think I am out of the loop on this one. I don’t think people know enough to have stereotypes.
How did you start to embrace albinism?
I don’t think I ever didn’t? I am what I am and albinism is a very small part of me.
Have you been able to fully embrace albinism?
Again rejecting albinism would be rejecting reality, and I am not down for that. I like who and what I am so yes. I accept it and there are aspects of it I enjoy. Like how I stand out.
Do you sometimes wish you didn’t have albinism?
I like my hair color/skin/ and eyes, but I would ditch the visual disability any day. I would like to have the aesthetic without the cost.
What are cons of having albinism?
Sunlight mostly, not being able to read thins that are far away, everything is so bright, having to sit at the front of the classroom.
What are pros of having albinism?
I look cool, everyone always remembers me, teachers have to let me use electronics in class because I’m blind, I have a cool fact about myself I can always whip out during those stupid get to know you games.
What are the biggest misconceptions about people with albinism?
That we all have white skin and red eyes. It presents differently in people than it does in animals and a lot of us can look pretty normal if you don’t look too close.
What are facts about albinism?
Our vision is not degenerative.
We all are very sensitive to light (photophobia)
We have less cones on our retinas.
We can see color just fine, maybe even a little better
We don’t have stereoscopic vision (our brains don’t put the pictures from our two eyes together in one picture)
What are things to NOT say to people with albinism?
Why don’t you just get better glasses.
Maybe you should try Lasik surgery
How many fingers am I holding up
Say something to people who have albinism.
Don’t try to be like everyone else, its not going to happen. Time to embrace the fact that you look awesome and work it.
Say something to people who don’t have albinism.
Please ask me questions about it. I love teaching people things, having conversations. I would rather you ask all the questions than not ask anything at all.
Who is your favorite celebrity/character with albinism?
I don’t know any off the top of my head, but I am writing a book with an albino character, so he is my favorite, bit I am biased.
Do you love or hate having albinism?
Its a love hate relationship. Depends on the day and what I am doing at the time. Every time I have to put on sunscreen you better bet I curse albinism for all I’m worth. But when the nice ladies at the salon are complimenting how cool my hair is for the hundredth time, I don’t mind it so much.
Share your experience as a person with albinism.
Honestly pretty good so far. I am an artist and a writer, and I played a bunch of sports in school, and I did martial arts etc etc. So pretty normal all things considered.
(Someone sees you in real life, it’s obvious that you are, but they are asking ): “Are you an albino?” Reply savagely.
Nope, I just left my melanin in my other pants.