JICHO

 

Living with albinism...

Vince is a normal yet unique human being; he has albinism, a genetic condition that means that his body has a partial or complete loss of pigmentation of the skin, hair and eyes, forever making his life in sub-Saharan Africa difficult.

This is his story, from tragic beginnings to amazing success, all because of the kindness of one woman and something as simple as a pair of glasses.

 

As we all sat down in Dr Choksey’s eye clinic, I filmed the children waiting for their routine check-ups on the Tuesday that Dr Choksey left free to see her patients with albinism. Each of them took no notice of the camera, except for this little girl - such a powerful, unforgettable look. Their names were also unique; one girl was named ZAWADI which translates as “The Gift” in Swahili. They are all remarkable characters in a sad story of neglect and death in Sub-Saharan Africa for people with albinism, but seeing and talking to them just showed what was blindingly obvious: that they are normal people caught up in hardship and a stigma gone too far that often results in killings and amputations.

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This is another photo I took during one of the monthly eye exams. The room we’re in is very unassuming, apart from a bright-orange chair tucked in the far corner. It’s in this chair that some of those with albinism - who have often experienced a life of prejudice, poverty and superstition - finally have a chance at a normal life. Their ophthalmologist Dr Choksey knows every name, every face, like they’re family. They call her mama. As the unassuming room goes dark with a flick of the switch, the girl in the chair puts on her glasses and begins to read from the only light source; a handheld eye test chart. She does so closely at first, out of habit because of her poor eyesight, then slowly but surely she begins to pull the writing away from her face, reading with greater confidence. The eyes still twitch from the intense light, but they seem more focused, braver; all because of a simple pair of glasses that she was given for free.

 

Dr Choksey’s clinic offers a respite from one of the more hidden afflictions of albinism, their eyes. Albinism is a lack of pigmentation in the skin, hair and eyes of those affected, resulting in the increased risk of skin cancer and very poor eyesight. It’s the latter that robs them of a normal life, and because of it children are often shipped off to schools for the blind despite having the ability to read up close. Free glasses prevent this harsh outcome, changing the lives of children and adults with albinism for the better.

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 But many of the people I spoke to throughout filming this documentary believe that not enough is being done to help, and some even believe there is still deep corruption in the distribution of aid from the government as simple things like suncream aren’t reaching those who desperately need it.

In the years since filming this documentary, I've been told that there's been little change.

 

TOM
HANNER |

FILMMAKER

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tomhanner@hotmail.com
(+44) 7919 200234

Based in Bristol/London