Almost every aspect of the daily life of African people with albinism is dictated by their rare and unfortunate condition – a quirk of genetics which means they lack normal pigmentation in their hair, skin and eyes. It makes for a life which most of us would find agonizing, even unbearable.
The initial work in this project was published in January in Stephen Robinson’s online exhibition and in Part 1 of this Leica Camera blog in March (see Life in the Shadows Part 1). Since then, online visitor numbers now total over 214,000 from 114 countries. So here’s Part 2.
Media coverage of this important human rights issue is surprisingly limited and usually restricted to reports of the extreme cases involving mutilation and murder. So this reportage seeks to show the every-day persecution and abuse suffered by those Africans who live with albinism. The Canada-based ‘Under the Same Sun’ organisation campaigns for greater awareness, understanding and action on albinism. It’s representative, Don Sawatzky, says:
“If the attacks and killings stopped today, most of the hardships related to albinism, especially on the African continent, would carry on as if nothing had happened. The stigma, discrimination and skin cancer-related suffering & deaths that affect the everyday life of a person with albinism, would still be agonizingly difficult for most.”
“While the psychological trauma related to the…terror of wondering if you are being hunted by family, friend & stranger for your body parts would subside, the profound marginalization would still be there in full force.”
‘While most people with albinism in Africa live with the fear of being attacked due to their albinism…the vast majority never will be. On the other hand, most will die prematurely of skin cancer…. In Tanzania less than 10% reach age 30 and only about 2% will live to celebrate their 40th birthday, due to skin cancer.” Matilda was one of the subjects pictured in Part 1 of this blog. She died in May, after falling ill recently with skin and blood pressure problems. The exact cause of her death is not yet known. She was 31 years old.
Some who saw the online exhibition have now set up an action group in Zambia, which has started to fund raise and give support to some of the most needy cases.
“This project came about as a result of, very occasionally, seeing people with albinism walking on the African streets, usually alone and under the shade a large umbrella. Who are these people; what are their lives like; how and where do they live?
The research, investigation and photo work has taken about 6 months so far, mostly full time. First, the people had to found and contacted, talked to and their stories & involvement requested. I had thought I would find a few people with albinism and make a small reportage. But then it was shocking to discover just how prevalent albinism is in Africa – and how very many people there are hiding away as a result of the persecution and health risks that come with their condition. So the project was suddenly much bigger.
The work is accompanied by the subjects’ own words – to tell their story and bring attention to what is a major, but tragically ignored, human rights issue. Very few people know about this, and when they hear it, they are usually horrified that it exists in this 21st century. Strangely, the mainstream media & press give very little coverage to what is a very serious human rights issue.
Of course all serious photography is about light and how it’s used. But the subject matter of this project much more so. The subjects’ lives and daily routines are dictated by light and shadow, by being outside or inside and by conscious decisions about moving from one to the other. As the work progressed, use of the same environmental motifs came about – strong light and deep shadow, doorways, windows, curtains, alley-ways, and the like.
This is all available-light photography done at and in the subjects’ homes and work places. Waiting to be ignored and trusted before making the shots was an important element. Also using only the minimum of equipment – a Leica M9-P and only two lenses, 50mm and 35mm. The photographs are un-cropped, full frame, showing what I saw through the viewfinder. I think things are more real that way.”
Gift (age 7, not at school)
Gift lives with her mother in extreme poverty in one of the poorest shanty townships. From an interview, Gift’s mother, Sharon, says (translation):
“Gift…was born as an albino. After her birth, the nurse said she’s an albino and I told her father that I have an albino baby. He said he cannot have an albino child and he told me that I am on my own and that’s how he left me and my baby. I named her Gift because she was my gift from God and my husband.
I didn’t know how to take care of her – I was selling vegetables with her on my back without knowing that I am damaging her skin. I am staying in a very small house with no plaster, so flies and mosquitoes are biting her. As a result she started having sores, rashes and ringworms etc. That’s how the problem of the skin started, as young as she is. As a single mother, still I am not managing to take good care of her because I don’t work and because of her I’ve stopped selling vegetables…people say that for me to have an albino I am cursed including the baby. I am being laughed at and the child too. They’re calling her names that she looks like an animal because of the dotted skin. Some are calling her a woollen doll etc.
My family cannot eat with my albino girl. They cannot share anything like cups, spoons, bath tubs etc. They say her mouth looks like a pig, so they can’t share anything with her. She’s being neglected by my own family and her father. As she was coming out to urinate it was night time. People screamed at her thinking she was a ghost.”.
Dalitso (age 15, school pupil)
“I was born an albino child, when my father saw me that I am an albino my father was very-very confused angry of me Dalitso then my father told my mum that we are going to have a devoced [divorce]. Because of me Dalitso been born an albino, the same day that I was born, the nurse who was on duty was also confused of what was happening… to my father so from that time my father divorced my mum because of me Dalitso.
So I was taken care (of) by my mum along. My mum loved me so much. So she took me in… lion’s school for the visually impaired…. I passed my Grade 7 examination …then they is a person named doctor mwansa who work with people…who doesn’t see very well on board. then doctor mwansa told my mum that your son Dalitso is not blind person he is just like us it is just only one thing which is missing in Dalitso’s body which is merranine [melanin] which determines the collar [colour] of the skin.
Then I came back to …(and) am at …Secondary School… and I will always be praying to God to protect my mum and my family and also me Dalitso from [with] all of his kindness. I am now 15 years old, and I don’t know the face of my father because he my father didn’t want to see me face to face up to this time it’s only my mum who is doing everything for me. I love my mum with all of my heart she is the most wonderful mum I ever seen in the World only God who knows what is happening to my family.
I don’t want to see my father because of his stupidite [stupid] manners because a normal father can’t abandone his son Dalitso. We are four children in our family Dalitso, sister bertha (Bertha) and sister waka [Waka] and one last brother from other father brother winter [Winter]. I hard passed in a hard life”.
Hope (age 23, unemployed)
Hope says in an interview (translated):
“I am an albino who was abandoned by my dad because of my albinism. Thank God mum took good care of me in the absence of my father. Mum tried so hard for me not to feel neglected and she tried so hard for me not to have sores.
The problem I have is sight. My sight is very poor that I even failed to complete school. At school, because of my short sight, the teacher who was teaching me failed to understand and accept me. I was being discriminated and humiliated. The teacher and the other pupils were calling me names which hurts. I was playing alone at school, eating alone, sitting at the desk alone while they were calling me a doll, ghost etc. It made me stop going to school because I was the only albino at that school. As an albino I’ve discovered that you cannot survive without education.
People only come to love and accept you as an albino when you have something to give them. When I … used public transport and where I was sitting it was a two passenger seat. I was sitting there and where I sat people were afraid to sit with me. They preferred to take another bus than sit with me. I felt bad. What a cruel world.”
Tesiya (age 12, school pupil)
Tesiya lives with her uncle, who writes:
“Tesiya was born in 2003… After discovering that the child was an albino the mother waited up to 3 months and she ran away she left the baby with the father. The father to Tesiya is my immediate brother so he brought her to me. From 3 months old up to date I was the one looking after her.
She was being laughed at by our own family and they say she is a curse to the family. People were laughing at her saying she’s a doll. Some were saying she looks like a pig. Some were saying she’s a ghost.
When she started school the pupils were afraid of her. Even the teachers were afraid of her because she is an albino.”
Donald (age 50, Deputy Head Teacher)
Donald says, in an interview (translated).
“I was born on 24 June 1965…I was born an albino. It was not easy in those days to see an albino. There was a lot of stigma so (people said) my mother was like a curse to her family because she accepted to nurse an albino child.
In those days sunscreen was nowhere to be seen so I was having skin problems such as sun burns. I found it a challenge in education especially seeing the [classroom] blackboard. Teachers at that time did not accept and understand me as a pupil. Being the only albino at school, my fellow pupils were laughing at me, calling me names. As a married man, it has not been easy for me as an albino. My in-laws will not eat with me and they tell my wife that she’s a curse [because she is married to an albino].”
Emililo (age 44, unemployed)
“I was born 44 years ago … I was born as an albino. So it (was) not strange because I am not the only one in the family. We’re three.
I grew up in the village whereby they didn’t even know how to take care of me and the rest. I started developing skin problem. When I was 10 I was having sores, and there was no treatment. Sores turned into deep wounds so that’s how my Problem started. They discovered that I have cancer.
I cannot marry because Ladies are scared of me because of Cancer. I cannot be employed because of my situation. I can’t use public transport; people say I do stink. People are afraid of me. I’m just staying alone and no one to look after me. My skin problem or I’d rather say Cancer has made people run away from me.”
The online exhibition of the work done to date on the project can be seen at: http://www.wildfotoafrica.com/index.php/new-work/life-in-the-shadows-exhibition
In the first 3 weeks since the Life in the Shadows: Albinism in Africa exhibition was published online, the visitor numbers have totalled over 50,000 from 105 countries.
About Stephen Robinson:
Stephen Robinson is a professional photographer operating from his Zambia base. He was born in England in 1952 and moved to Africa in 1975. He makes his living doing assignment photography for commercial, mining, agricultural, environmental project and donor-aid project clients. This work extends beyond just photography to include his production of photo-based marketing and communication materials. His aerial work and his specially-developed panoramic landscape techniques are used to illustrate the ‘big picture’ scale and scope of his larger clients’ projects and investments. Such work includes the production of custom made, fine art corporate photobooks.