Albino Stories

Albinism Stories

Written by Mr Harry Freeland, 2006.

VEDASTUS ZANGULE:

Each day children line up for morning assembly before entering their classrooms. They chant and dance to a rigid drumbeat, bringing the school together as a unit. When Veda lines up the other children immediately push him out. He walks to another line, only to once again be pushed out and rejected. He tries another, and another. Until finally, defeated, he walks home. When kids in the village go fishing they tell Veda to come with them, in case their boat sinks they can climb on his back to prevent them selves from drowning. In Vedas village it is a belief that Albinos float on water.

This young boy deeply affected us and was the most difficult character to leave behind. He sat in front of us as a child, but told his story as maturely and as poetically as if he were a grown man. He spoke clearly and emotionally about his life, from the tightness of his skin to the verbal and physical abuse he receives day after day. His story is a vital one and on top of this daily struggle, Veda's mother is dying of Aids. He will soon join the many other Aids Orphans suffering across Africa.

ALFRED KAPOLE:

Alfred sits in the front seat of the car. His dark shades make him appear ten years younger than he is. He heckles and shouts out at people as we drive past them, cracking jokes and amusing us with his infectious laughter. Although often serious in his tone, it is not uncommon for Alfred to belch half way through a sentence and carry on as if nothing had happened.

Alfred Kapole is 44 years old. He has a non-Albino wife, Sikuzania A. Kapole age 25 and two non-Albino children, Judith A. Kapole aged 10 and Passikazia A. Kapole aged 3.

Alfred is the chairman of the Ukerewe Albino society. Proud of his duties, he cycles for miles from his home in a remote part of the island to attend any necessary society meetings in the main town of Ukerewe, Nansio.

Alfred has a rare gift of being able to break down all language barriers, encouraging communication with a simple laugh or a smile. This natural ability was not only helpful to our communication, but when entering villages where some people reacted badly to the survey or our presence his reaction was so effective when calming the situation. When conducting the survey Alfred appeared to come into his own once counseling others, sharing his own experiences, listening to theirs and making people realize they were not alone.

Alfred is in great health for an African Albino of his age. He is the oldest Albino we know of on the island and lives life extremely positively. Recently I heard Alfred had been asked to become the chairman of the Mwanza albino society on mainland Tanzania. This will be a great honor for Alfred, although I hope he doesn't abandon his duties at home.

ALPHONCE KAJANJA:

Under the shade of the trees, amongst the small patches of light dancing on the dusty mud floor, Alphonce stands with his shirt tucked in and trousers pulled high. Like a boxer he lifts his homemade weights up and down. He voraciously punches the air and moves from side to side as he explains how he is the strongest man on Ukerewe and probably the strongest Albino in Tanzania.

At 38 years old, he is the only remaining Albino child of Nyansatu Bwire (Grandma Kajanja). He has a non-albino wife and they have three non-albino children. It is much more common for an albino man to marry a non-Albino women, but it is very rare that an Albino woman manages to marry a non-Albino man.

Alphonce is full of stories. Growing up as a Kajanja family member he is thankful to his mother for the way she brought him up. She gave them strength and confidence to believe they were no different from anyone else. He talks about his brothers and sisters who died of skin cancer and what it was like as an African growing up with white skin.

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Alphonce is one of the only Albino men on the island to have a job, working as a fishmonger at the market. It was not an easy journey for him to reach his position, as he had to fight several men before being accepted and was given the right to a patch to sell his fish. Because of the stigmatization there are often days where he hardly sells anything.

Whilst filming on Ukerewe, the rains began and Alphonces house collapsed. His family were left with nowhere to sleep other than in the remains of his empty half fallen down house.

MUSA MANYASI:

As the sun rises, Musa walks slowly behind a herd of cows, swinging his arms uncomfortably as he walks. He has a shirt tucked into his trousers and a hat pulled down over his eyes. His frame appears so skinny that his shirt blows in the wind as though its not attached to his body. Musa is deeply lonely and longs to be loved. More than anything he prays for a companion to share his life with. He says "Women laugh and shout at me when I ask them if they will be my wife"

Musa is 20 years old. Abandoned by his parents when he was just two, he has had little if any contact with them since. He remembers seeing his mother just once since she left and she would not touch him. He now lives with his uncle and 13 other children on a remote part of Ukerewe Island.

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Through a worrying lack of education and care, Musa has been made to work out in the hot sun. As a result his skin is red raw and his lips are swollen. He is segregated from the rest of his cousins and is forbidden to share their cups and plates. He planted two trees and sold the wood in order to buy himself a set of clothes, a bowl to eat out of and a cup to drink from. These are his only possessions.

His nickname in his village is "Muzungu", which translates from Swahili as 'white man'. It is a word often used when a white westerner is seen.

He is overwhelmed with life and often wonders why "they didn't just kill me when I was young".

PASCHAL MERUMBA:

A small 'boy like' figure climbs over some rocks and disappears into his log cabin. Always alone he takes comfort from darkness. His albino sister recently passed away, described as his "only friend" Paschal pines for her and the only true human connection he now experiences is that of taking care of his dying father in a neighboring hut.

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"My only friend in the world was my Albino sister and now she is dead."

"When I found my sister dead, people in my village had left her in the hut to rot. The same will happen to me, but nobody will be there to touch my body"

Out of grief and desperation Paschal has tried to kill himself two times by drinking battery fluid.

He lives and works by the Lakes edge, pulling in nets with the young village boys as the older fishermen refuse to fish with him. His skin has been so badly beaten by the sun that his face looks wrinkly and tight, his eyelids are so sore that his eyesight has almost disappeared completely.

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Paschal had a very bad cough when we found him, which worryingly resembled the symptoms of TB. Paschal described his sister who recently past away also had a cough before she died. Pascal is in desperate need of medical attention.

FELISTA AND KEVIN:

Felista is 20 years old. She moved to Ukerewe Island after marrying her husband 2 years ago, as it is customary for a Tanzanian wife to move to the husband's family home. Shortly after making this move, Felista gave birth to her first child, Kevin. Upon discovering that his son suffered from albinism Felista's husband immediately rejected the child and placed blame on Felista and her ancestors. Her mother in law tried to persuade her to kill the child, a practice that still occurs in rural parts of Africa. As Felista refused to do this, her husband abandoned her and she was made to leave her home. Alone, with no family or friends she found herself homeless with a young child to look after.

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We found this to be a common occurrence on the island. Mothers of albino babies are often the most victimized. Dammed by their husbands and lacking any kind of education regarding their child's condition, they struggle to cope and often abandon or feel that they have no other choice but to dispose of their 'cursed' child.

In this case, Felista and Kevin were lucky to be taken in by a Samaritan. However we were aware of how worryingly temporary this aid was for Felista. The Samaritan was an alcoholic and often could not feed the pair.

Felista trusts no one with her son. She is continually heckled as she walks through the streets. We witnessed this when walking through a small bustling fruit market. As we made our way through alley ways carved out from stalls pilled high with crops, sharp eyes and verbal abuse followed Felista, who had Kevin strapped to her back wrapped in a cotton scarf. "I know what you have under there" they taunt. But Felista adores Kevin and will not give up on him. She has a quiet strength about her and simply flashes us a smile and marches on through the crowds. She tells us that Women often spit on the floor in front of her and call her names. She says, " I even cut Kevin's hair regularly so people cannot steel it as there are myths that the hair of an Albino will stop women giving birth to there own Albino child'.

When the Samaritan could no longer afford to care for Felista and Kevin, Felista new she had to find the money and travel home to her family on the mainland. It was a long journey and she was uncertain whether her parents and siblings would accept her child when she got there.

Since we returned to the UK, we hear that Felista has made the journey home, only to discover that her family had split. Her mother had become mentally unstable and her uncle refused to take care of her because of Kevin, she therefore had no choice but to return to the island. Kevin is now 1-year 8 months and life is still an uphill struggle for this young mum.

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