Side Hustle/ Photography

Living with Albinism

  • John Ferguson

Albinism is a rare genetically inherited condition, which results in a reduction of 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 sight and photophobia (severe sensitivity to light).  Apart from the physical challenges of albinism it also brings social and cultural challenges. They 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.    Typically all those photographed for this project have their own very personal intriguing and sometimes traumatic stories, which will feature along with their portrait.  This project aims to highlight as to how living with albinism really is, it also aims to enlighten and educate the viewer. Not enough is known about the condition or about the everyday circumstances affecting these peoples lives.