Ukerewe African Albino Society
"We do not melt in the rain, we do not disappear- we live and die like normal people"
"If you keep on thinking about what people say about you or do to you, you will have tears on your cheeks forever."
Introduction
Southern Africa's Children has been working with a community of people with albinism on Ukerewe Island since 2003. People with albinism are not integrated in African society and in Tanzania today generally they are believed to be cursed or have supernatural powers and in the last twelve months (2008/2009) 53 people with albinism have been brutally killed for witchdoctor potions and ritual ceremonies. Children with albinism suffer hugely as they are stigmatised from birth often by their own families.
Albinism affects 1 in 20,000 people worldwide. According to TAS, (The Tanzanian Albino Society), there are 4,000 albinos officially registered but they estimate that the real number is between 173,000 and 270,000 people with albinism living in Tanzania today.
Albinism is an inherited gene disorder. The albino gene is recessive and stops the production of pigment in the skin, hair and eyes. People with albinism suffer greatly under the African sun and those that do survive birth often die at a relatively young age due to skin cancer.
Southern Africa's Children has chosen to work with The Ukerewe Albino Society. In 2006 Southern Africa's Children gave the funds for a survey to be carried out on Ukerewe islands by members with albinism, to find other people who are perhaps being hidden away by their families or experiencing fear and stigma. The survey found 53 men, women and children with albinism. This is a large concentrated number for one area and suggests that the prevalence rate of people with albinism on Ukerewe Island as 1 in 4,000.
The Ukerewe Albino Society on Ukerewe Island are keen to work together to prove their self worth and not be a drain on society, encouraging the community to understand their self worth and empowering them to help those most in need.
If you would like to receive a copy of the survey findings please email Jennifer here.
The Ukerewe Albino Society are keen to work together to prove their self worth and not be a drain on society, encouraging the community to understand their self worth and empowering them to help those most in need.
Southern Africa’s Children is working in partnership with the Ukerewe Albino Society to construct The UKerewe Umoja Community Centre.
The overall aim of this project is to improve the relationship of individuals with albinism and their neighbors and ultimately integrate albinism into society.
If you would like to be sent the Ukerewe Umoja Community Centre proposal please email Jennifer here.
Quotes
- More than anything he prays for a companion to share his life with.
- 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.
- He is overwhelmed with life and often wonders why "they didn't just kill me when I was born".
- In Vedas village it is a belief that people with Albinism float on water.
- Asked what he would do if he could do anything, his answer was "I want to go far away from here".
- A small 'boy like' figure climbs over some rocks and disappears into his log cabin. Always alone he takes comfort from darkness.
- "My only friend in the world was my Albino sister and now she is dead."
- As we made our way through alley ways carved out from stalls piled 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.
- She has a quiet strength about her and simply flashes us a smile and marches on through the crowds.
- "When I saw my baby my heart filled with love, I was so happy. The doctor offered me poison to kill my cursed son but I would never do it"
- Officially 53 people with albinism have been brutally killed in Tanzania over the past two years, many of them children.
- The average life expectancy for persons with albinism in Tanzania is 30 years, with only 2% living beyond 40.
- In the USA and Europe it is estimated that 1 in 20,000 people have some form of albinism. In Tanzania however, it is 5 times as common with 1 in 4,000 being affected.
- There are 18,000 recorded people with albinism in Tanzania, however the Tanzanian Albino Society believe there are as many as 170,000 in total.
- Ukerewe is the largest island in Lake Victoria, the largest inland island in Africa, and the seventh largest lake island in the world.
- The Umoja Centre is unique, as it will offer access to essential services for the whole community as well as meet the needs of and empower the Ukerewe Albnio Society.
- Umoja is the Swahili word for 'unity' and 'togetherness'.
- "Her greatest enemy used to be the sun, now she walks in fear wherever she goes"
- "These killings are shameful and distressing to our society' Mr Kikwete The President of Tanzania"
- "...belief that potions made from an albinos legs, hair, hands and blood can make a person rich" "Mrs Kway-Geer is the first Albino MP in Tanzania"
- 173 witchdoctors have been arrested since March (2008)
- Buyers from as far away as DRC, Burundi, Kenya and Uganda believe the legs, genitals, eyes and hair of people with albinism can help them achieve instant wealth' (Source: The Guardian 16/11/2008)
- An albino hand is selling for two million shillings (GBP1,200)' (Source: The Guardian 16/11/2008)
If you are interested in supporting any of these projects then please do contact Jennifer Walker on 01933 664091 or via email. Alternatively click on our "How to Help" page.
