This article originally appeared on VICE Netherlands
Albinism is a pretty well-known condition. What's not such common knowledge that it can involve much more than just pale skin and whitish hair. There are two main forms of albinism – one that affects just someone's eyes, and another that affects the skin, hair and eyes. There are four common types of that last form, Oculocutaneous Albinism or OCA. Someone with one type can have very white hair, pale skin and light-coloured irises, where another type is less severe and might not affect the hair. Albinism also often goes with nystagmus – involuntary eye movements. In the UK, approximately 1 in 17.000 people have the genetic condition.
Rosa de Groot, a 23-year-old from The Netherlands, has OCA 2, which means her hair is light and she has nystagmus. I spoke to her about what life is like if you're albino.
VICE: What was the moment you realised you looked different to other people?
Rosa de Groot: I've always known that I'm different. My sister has albinism too and my parents were always open about it to us. In elementary school I had a table at a special angle so I could read without having to bend over my desk all the time. But I specifically remember one moment talking to my mum one time when I was about nine, and saying something to her about having a car when I was grown-up. "Rosa," she said, "you'll never be allowed to drive a car."
What bothers you most about having albinism?
The most annoying thing is that I can't make out things at a distance. Once something is more than 20 inches away, it's blurry. It's just very frustrating, for example, when I'm taking a train and I have to stand extremely close to an information board to see where a train is going. I've often missed trains because I want to make sure I'm getting on the right one and have to walk all the way back to the information board. And friends or acquaintances tend to get insulted when they say hi to me from a distance but I don't say it back because I don't see or recognise them.
Have people ever been afraid of you because of the way you look?
Not afraid, but some people do get uncomfortable when they don't know how to look me in the eye. My eyes tend to go in every direction at once, and that's always the first impression people have of me. Some people gather from that that I have albinism; others just assume that I'm not right in the head.
What are the dumbest questions you get?
I find it particularly stupid when people ask me if glasses wouldn't help me see better. If they did, don't you think I would be wearing them? Another annoying one is: "Aren't your eyes red?" You can see clearly that they aren't, so why ask, moron? I usually try to politely laugh it off, though.
Does your condition stop you from doing things other people can do?
It has been very hard to find a job. During my gap year I applied for so many but was rejected everywhere because of my poor sight. I can't work in a restaurant, for example, because I can't see depth. I can't tell if people have finished their meal, while walking around with a tray filled with breakable stuff isn't a great idea either. I hate it that the moment people find out I'm albino they don't want me any more. One time, when I applied for a job as a cashier in a supermarket, they were so nice and positive over the phone and that changed completely the moment I walked in for the interview. The guy asked about my eyes immediately, and when I told him I have albinism, he said: "Okay, never mind then."
Do you ever try to hide it?
I never wore any mascara until I was about 20. When I don't wear it my eyelashes are white and there's not much expression in my face. I've considered dying my hair, too – not to mask anything, but because I'm curious what my hair would look like, because it's colourless. If I dye it red, would it be this extremely red colour?
Would you ever be attracted to an albino yourself?
Other than my sister, I've never met anyone else with albinism. The idea of two of those white heads walking down the street together just seems weird to me, but it would totally depend on the person. I don't pay that much attention to people's looks because I know from experience that it's more important to see someone's personality.
Do you ever go on holiday to sunny places?
Sure, I love going to Spain. I don't melt away completely when I'm in the sun for more than two minutes, and I don't burn to a crisp. I just use a lot of sunscreen – SPF 30, all day long.
What are the pros and cons of having albinism?
I'm not happy about my eyesight, because of what people say and just the fact that I can't see as well as other people. But I'm really happy with my hair colour – it's pretty and unique. When I go on holiday I get comments about my hair colour all the time. People call me Lady Gaga and want to take pictures with me.
Albinism is a genetic condition; how would you feel if your children inherited it from you?
There's about a 30 percent chance that I pass it on to my children. It's a difficult decision, because I know how hard life can be when you have bad eyesight. Having albinism does give you a different perspective on the world and I definitely think it's a beautiful thing. But I might find it troubling for my child to see so little, be bullied and not able to find a job – like me. I studied journalism for two years, and I spent those years bending over my laptop too deeply, which led to chronic pain in my back and neck. I worked so hard to pass my classes that I might have fucked up those muscles forever. I wouldn't want my child to have to go through that, too.