Albinism is a rare genetic condition that affects the pigment of the skin, hair and eyes. For Karice Baker-Quow, the hardest part was not just fitting into society, but being shunned from her own black community. By Cynthia Lawrence. Photos by Richard Williams (www.121photos.com)

Albinism runs on both sides of my family: my uncle also has it, as did his late mother. I was about five years old when my parents first told me that the reason my skin was white was because I didn’t have any pigment. But I’ve always known I was different. I have to keep out of direct sunlight because no melanin in the skin means I could suffer really bad sunburn. My eyesight is bad: my optometrist told me I have 50 per cent less vision than the average person. So when I was at school, I had people from the Royal National Institute of the Blind to come and help me. I had large-print books and I sat at the front of the class, but the other kids didn’t give me a hard time.

The problems began at secondary school. The popular consensus from the children was that if you were light-skinned, you thought you were better than anyone else or stuck up. If they didn’t think that, then they would say I must be using some skin-lightening cream. The teenage years are awkward enough, but when you have albinism it’s even harder to try and fit in.

It was hurtful and made me introverted. I had really low self-esteem and stuck with the friends I knew. I didn’t go out of my way to meet new people. For a long time I took the abuse, but everybody reaches a breaking point. I started questioning those people about what they knew about albinism. Of course, they couldn’t answer. I would say, “Instead of bringing up negativity, why don’t you just ask me?” When I broke it down to people that way, they realized they’d handled the situation badly. I’ve actually become friends with some of those people! When I’m out, most people just stare. It does get frustrating, and I just want them to leave me alone. But if I’m in a good mood, I just smile at them. I’ve felt rejected by both the white and black communities. Ironically, most of my grief has come from black people. It’s more hurtful not being accepted by your own people. The common perception was that I must be mixed with white or should pass for white. When I was 12, I learned how to corn-row my own hair, and somebody commented that I should start straightening my hair. White people would come and compliment me about my hair, but black people would say the opposite. Things like, “You’re so pretty, if you straightened your blond hair and wore blue contacts, you could pass for white”, but for me that was never, ever an option. I was never into the whole passing-for-white thing and found it totally offensive.

I was raised to have more self-respect. My parents and uncle made sure from a young age that I was under no illusion about my race. My dad’s family are from Montserrat and my mum’s family from St Vincent. I was taught to be proud of the fact that I had a long, beautiful, rich history that I should embrace. Society dictates that you have to look a certain way to be beautiful, and that way is an un-African way of looking. What’s wrong with being African? I think there is a lack of education in the community about being black and proud – saying it and feeling it are two different things. I would consider myself a conscious member of the community. I go to various social events and meet different people.

Now at 23, I’ve gained confidence and have excelled academically and socially. The challenges are more about other people and how they perceive me, but you can’t change people’s perceptions. I’m not in a relationship, but if it’s meant to happen, it will. My ideal man would have to be a black man who is aware of his cultural heritage. In the last few years I haven’t been ready for a relationship, but that was more due to not having the time or the inclination. I do fear rejection, but no more than any other woman, and now I feel I can let my guard down.

There are no social networks in the UK, but I do want to set up a support group for black albinos because the issues we face are different from those of white albinos. If I could change myself, I probably wouldn’t. Although it would be lovely to have perfect eyesight and to have the melanin, on another level being albino has helped me see things from a different perspective. For example, I’m more understanding with regards to people with special needs and people’s feelings.

I would have been a completely different person had I not been an albino. I’m more culturally aware because I’ve had to give a lot of thought to where I stand with regards to my race and culture. In doing so, I learned how to love myself and can see how destructive self-hate can be for anyone, not just those with albinism.

For further information, visit www.albinism.org