18 July 2017
18 July 2017 - Written by Gemma Padley
Sanne De Wilde embarked upon an epic photo journey that took her across the other side of the world to explore the rare genetic condition, achromatopsia, or ‘complete colour-blindness’.
At the end of 2015, Belgian photographer and artist Sanne De Wilde travelled to Pingelap and Pohnpei: two islands in Micronesia, a country in the Pacific Ocean comprising hundreds of islands and islets. She spent a month there, dividing her time between Pingelap and Pohnpei where a high percentage of inhabitants have the genetically inherited condition, achromatopsia. Not only are those with the condition unable to see in colour, they also suffer from a painful intolerance to bright light and an inability to see fine detail, says De Wilde.
Pingelap has become known as ‘the island of the colourblind’, and it is believed that in the 18th century the king of the island carried the achromatopsia gene and contributed to the spread of the condition.
De Wilde, whose work often explores themes that include geographically or socially isolated communities, collective identities, and genetic "trails", found out about Pingelap when a young Belgian achromatopic man got in touch after hearing her speak on Belgian radio. “The man sent me an email saying ‘I have a story for you’,” the 30-year-old recounts. He told her about a travelogue by neurologist and writer Oliver Sacks who first wrote about the phenomenon in his book published in 1996. Inspired by what she learned, De Wilde decided to embark on a trip to the region to make a body of work, which she later named after Sacks’ book, The Island of the Colour Blind.
In her project, which she recently published as a book with Hannibal Publishing and Kehrer Verlag, De Wilde photographed across the two islands, including 40 of the achromatopic islanders. She shot in black and white and using infrared photography in “a metaphorical attempt to envision how people with achromatopsia see the world.” Later she asked members of a Dutch organisation for achromatopsia to paint in colour onto her black and white images, "adding another layer of working with the people and having them project their vision onto my images not knowing which colours they were using."
For the Belgian artist, the project, which was recently shown as an interactive installation at Les Rencontres d’Arles in France, was about exploring what she experienced through photography, conversations, myths, and storytelling rather than using a factual, research-based approach. “I’m not a scientific researcher, I’m a visual researcher, a photographer,” she says. “I didn’t study achromatopsia in all its scientific aspects; I studied it visually and learned through first hand experience.” Part of what she discovered was that there is a lack of knowledge and education about the condition - where it came from and how it affects people - among island inhabitants, she explains, although others are more informed and do what they can to help those with the condition.
De Wilde herself worked with the Dutch organisation for achromatopsia to try to find ways to help, but "the organisation advised me that bringing lenses is not a solution as there is no educational infrastructure [and] if people use the lenses incorrectly it might cause more [damage],” she says. “I hope to find someone to fund a solution in the future and go back, this time not empty-handed.”
Sanne De Wilde is a Belgian photographer currently working as a freelancer for ‘De Volkskrant’ and living in Amsterdam, Netherlands.
Gemma Padley is a freelance writer and editor on photography, based in the UK.
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