By Nick Young with Elone Natumanya
The skin of seven year old Hayaki Kefa’s right ear has bubbled and burst into painful and unsightly sores. This is not the symptom of some rare illness but simply a bad case of sunburn, to which she is highly susceptible. For, although she is a normal Ugandan girl in every other way, Hayaki is also an albino child, lacking the skin pigment, melanin, which not only affects skin colour but also provides protection from the sun’s rays.
Hayaki’s parents, Matayo Watumba and Sicola Mutonyi, are poor farmers in Mbale District. Much too poor to afford the sunscreen lotions that white tourists in Africa lather on their skin. Instead, Hayaki’s parents buy her hats to shade her from the same sun that ripens their crops.
Yet, all too often, her playmates in the village steal the hats to tease her. Such casual unkindness is a sad omen for a life that that seems destined to be tough.
Now, however, an Elgon Foundation for Persons with Albinism hopes to bring some help—or, at least, some self-help—to melanin-deficient children and adults scattered in the districts clustered on the slopes of Mount Elgon.
No-one knows for sure how many Ugandans suffer from albinism but most estimates put the number at between three and six thousand.
The Mount Elgon region NGO was established last year and is led by several young activists who, despite the handicap of their own medical condition and the widespread social prejudice it arouses, have managed to get a foot on the professional jobs ladder.
Secretary of the new group is Musa Kimaswa, aged 28, who works as an Accounts Clerk with Budduda District government while also studying in Mbale for an accountancy qualification. The brothers Phillip and Joseph Makasi, 34 and 31 respectively, are teachers in a private primary school. They are determined to make sure that children with albinism get a fair chance to complete their education.
Many Ugandan children with albinism make a good start at school. Isaac Kilongo, a chirpy eight year old from Mangabo village, who enjoys nothing so much as kicking a banana leaf football around, is doing well in his Primary-2 class. He tested fifteenth out of around 60 classmates last term. Agatha Natumye, a ten year old from a neighbouring village, could boast more if she were not so shy. She came seventh last year in a class of similar size.
But very few Ugandan children with albinism progress beyond primary school to gain the knowledge and skills they need to live full and independent lives.
One reason is that schools rarely make allowances for the special needs of these children. As well as being hypersensitive to the sun, they have sore and sensitive eyes which are invariably very short-sighted. Pupils in class cannot see the blackboard and so struggle to learn.
Moving on to senior school is also daunting because, in a new place and among new classmates, children with albinism encounter more prejudice than in their home communities.
Mukuma Shaban, now aged 31, stopped school after Primary-7 for that reason. He is more or less accepted in his village, he says, “But if I go to a new place people fear and shun me.” He has travelled to Mbale, the regional centre no more than 30 kilometres away from his home, only once in his entire life.
Fear stems from ignorance. Sicola Mutonyi explains that “People fear something bad may happen if they touch an albino’s skin.” A common superstition in rural areas is that when albinos die their bodies simply disappear—suggesting that they are not fully human.
For their part, people with albinism have every reason to fear strangers. In recent years, “Something erupted and they started sacrificing people like us” says Doreen Kiboni, a thoughtful and well-spoken woman who attended secretarial college in Mbale for one year before dropping out because of problems with her eyesight.
Murder of albinos, for supposedly magical purposes, has been documented in Tanzania and Burundi. Most people we spoke to said that this hasn’t happened in Uganda. But the fear is always there, and this reinforces the isolation of people with albinism, who seldom venture beyond their own villages.
A remarkable woman who does not herself suffer from albinism, 34 year old Sherry Nambuba, played a key role in founding the new NGO. She is blind and has long been active in associations for the blind in her native Mbale.
In 2008 Sherry met and befriended a young woman with albinism. She then began informally to make contact and network with other albino people in the area, including Musa Kimaswa and the Makasi brothers.
Late last year they obtained support from Action for Disability and Development—a UK-based NGO with a Uganda branch that Sherry knew—to convene in Mbale a “general assembly” of people with albinism. They were expecting a couple of dozen people to attend, but well over eighty turned up.
Since then, the group has been carrying out “sensitisation” activities but also drafting a plan of action for future work.
With the great majority of members coming from poor, farming families, improving livelihoods will be a major challenge.
“When government brings in programmes like NAADS it is very hard for people like us to participate,” says Musa Kimaswa. He hopes the group will be able to help its members to access special government funds targeting people with disabilities. But, he adds, “We will also need to provide some guidance and training so people know what to do with the money.”
Indoor work is much the best for people who are so sensitive to sunlight. At present they generally cope with farming by getting up before dawn to tend their gardens, returning home as early as they can. But, in a country with so much youth unemployment, chances for other jobs are strictly limited.
Nevertheless, Phillip Makasi says the group hopes to link up with an albinism NGO in Kenya which has had some success in making jewellery from bones and brass.
Vocational training and opportunities are especially important for families where more than one child has albinism, and this is indeed quite common.
Because albinism is a hereditary condition, passed on in particular genetic combinations, couples who are not themselves affected often have more than one albino child. Constant Wanasiba has fathered no less than five children with albinism: Pius, aged 20, Brotus, 18, Monica, 16, Nanjala, 14, and Bena, 7.
They are a close family, but lead a hard life farming just one acre of land.
It will be a vast task to, as the Elgon NGO hopes, “transform the lives” of families such as this. But a small start has been made.
Click here for a report by World Health Organisation researchers on the prevalence of albinism in Africa.
Click here for a report, compiled in 2010 by an Amercian researcher, on “Oppression Through Omission:
The Human Rights Case of Persons with Albinism in Uganda”
Click here for a blog by the Norwegian mother of a child with albinism. For several years she has been supporting work by another Ugandan NGO for people with albinism.