Living With Albinism

Albinism is a rare genetically inherited condition, that affects one in 17,000 people in the UK, and causes a reduction or complete lack of pigment (colour) in the skin, hair and eyes. This can result in pale skin that burns easily in the sun, virtually white hair, very severe short sightedness, and photophobia (severe sensitivity to light). It is inherited at random and can affect people from any ethnic background. Most albino children are born to non-albino parents who both carry the albinism gene. While some feel very conspicuous, others feel invisible in their own culture, as if they don’t belong.

John Ferguson spent two years photographing people affected by this condition. Typically, all those photographed for this project have their own very personal, intriguing, and sometimes traumatic stories. This project aims to highlight how living with albinism really is, and in doing so, enlighten and educate the viewer. Not enough is known about the condition or about the everyday circumstances affecting people born with it.

Apart from the physical challenges of albinism it also brings social and cultural challenges. People with this condition face discrimination, violence, ridicule, and even dangerously superstitious legends that cost human lives. Hollywood has also played its part in helping to portray albinism in a negative and misrepresentative way. From ‘The Molepeople’ filmed in 1956 right up to the ‘The Da Vinci Code’ in 2006, Albinos have been portrayed as villains, murders, hideous monsters, a product of incest, merciless and violent. There is also a misconception that all albinos are scary, mentally challenged, and a freak of nature.

Albinism affects every race and creed, from Australasia to Europe, Africa, North & South America, and China. Indeed, in some African societies the killing of Albinos has been taken to new extremes, where people have been murdered for their body parts as ingredients in rituals for magic potions.

Darnell says, “I really don’t like being albino, I hate it! People used to say, cool, you have the best of both worlds – you are black with white skin. When in fact it’s the opposite. Being black and albino you get the worse of both worlds. I am too black for white people and too white for black people! My eyesight is terrible, it’s like 20 over 200, which means that what you can see from 200 feet away I can only see from 20 feet away. It gets worse as you get older.

The eyes are like the coolest thing. Standing out is one thing, but then having a disability – that really knocks my confidence. Sometimes they ask what would you really like, your eyesight or your pigment? Most of the time I would rather have my eyesight. Other times I wish I didn’t stand out. Then you get all those clichés like ‘it could be worse’. In all honesty, I am the ‘could be worse’ for you. Why should I have to stand next to someone with no arms and legs to say ‘it could be worse’?! On an everyday basis, I am the ‘could be worse’.”

Ayo Note 18, Osimo 15 (centre) and their sister Atinuke 13, moved from Brixton in South East London to Barnet in Hertfordshire five years ago. Their parents moved because of their wish for a better education for the children. Their mother Faith Unoarumhi, originally from Nigeria, wishes she could now go back to Brixton. The children also wish to go back.

“The children here are set in their ways and ignorant. They are more accepting in Brixton. They broke my first son’s (Ayo) confidence. He’s a very bright child, but it took them three years before they realised how intelligent he is. They didn’t have any learning support system running in the school. So, Ayo, with his bad eyesight, didn’t receive any help with his reading. He cannot read small, printed letters. During one of his exams, he had to wait 40 minutes before his examination papers were found.” Faith says the school is brilliant, “but only if you don’t have a disability. I could have taken the school to court many times, but my other two children would have suffered even more.”

She feels the school has failed her children because of the school’s inability to understand their learning difficulties. She says that her complaints have made a difference for her two younger children at the school as their grades have risen. Ayo is flourishing and his confidence is back now that he’s moved to Barnet college.

21-year-old Victoria Adegoroye is from Leytonstone, East London. She is photographed here with her friends in Southwark. Adeola was born in Nigeria, her parents Esther and Tunda moved to England when she was two months old. She currently teaches at a local nursery school and plans to move on to university next year. The one wish Adeola would really like, is to have good eyesight.

“I would love to drive and have my own car. Because of my condition, I’m not allowed to drive any motor vehicles. Everything else in her life is fine. I’ve had years to get use to my condition, and as long as I wear my sunglasses on sunny days and I wear my sun cream, I have no problem.”