Look at her hair' – I wish albinism didn't make people stare
Recently, while walking to the library, a fellow student loudly shouted “look at her hair!” as I passed by. When you have albinism – like me – university can be a challenge.
The condition affects one in 17,000 people in the UK, according to NHS statistics. I have type 1 oculocutaneous albinism, which means I have no pigment in my hair, skin, and eyes. It also affects my eyesight.
Ellen Renton
At university I often meet people who know very little about the condition. Many ask bluntly how I managed to dye my hair white and why my eyes move from side to side (a symptom of the condition called nystagmus). Others have ill-informed ideas shaped by myths and media misrepresentations and so ask me why my eyes aren’t red.
But instead of abuse, we need support and greater awareness at university. My eyes grow sore and tired from reading all the books required for my English literature degree. I also find it hard to contribute to a tutorial discussion when I can’t see the faces of my classmates. However, I learned to adapt my studying habits; I use magnification technology and ask for help from the university’s disability service when I need it.
Other aspects of university life are harder. I moved into a flat in a new city, and even seemingly simple tasks became arduous during those first months.
Cooking was complicated by illegible sell-by dates and cooker dials. I also had to search hard for quiet places to cross roads – all of which was difficult because I couldn’t read street signs or see traffic coming in my direction.
Like everyone else, I am keen to make the most of social opportunities at university, but I have sometimes struggled. Many students would cite fresher’s week as a highlight of their time at university, but the barrage of faces, flashing lights, and slurred, insensitive questions about my condition gave me a different experience.
This problem isn’t specific to me. “It’s a student experience devised with the able-bodied in mind and so a lot of the events are inaccessible to me,” explains Eva Doherty Roe, a second-year French and film student at the University of Glasgow, who also has albinism. “It’s also really uncomfortable to have to explain a visual impairment and how it affects you within the first half hour of meeting someone.”
The United Nations has declared that the 13 June is International Albinism Awareness Day to promote global education about the condition and reduce the level of stigma surrounding it. This is necessary because people with albinism face discrimination in many forms: from “evil albino” characters in Hollywood films to ritual attacks on people with albinism around the world.It wasn’t until I became a student that I was struck by the enormity of the task faced by albinism rights campaigners and the importance of global awareness. I grew up fielding rude comments and stares, but I didn’t expect to have to deal with them every day at university, on top of the challenges of my physical symptoms.
The slogan for this year’s awareness day is “celebrate diversity, promote inclusion, protect our rights,” and I believe that as places of learning and cultural richness, universities are as good a place as any for the shift in attitude towards people with albinism to begin.
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