Children living with albinism
By Mark Oloo

Mr John Diongo choked with anger as he stormed out of the lobby at Homa-Bay District Hospital’s maternity wing.

Even with clear skies above, he had nothing to celebrate this afternoon. His joy turned into anguish and hatred. His wife had just given birth to two babies with albinism.

Too many thoughts ran through his mind. The object of his anger is the mockery awaiting him at home and the fact that the newborns would lower his social standing. Diongo believes his wife may have been a cheat for bearing ‘mzungu’ children.

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He vows to divorce the new mother, who will not be the first woman to have been disowned by her spouse for getting a child with a ‘white man’. Newborns with albinism have been routinely killed after birth by parents and midwives as myths on their condition continue, showcasing the aloofness with which the African society treats people with albinism, commonly referred to as albinos.

Since 2007, some 53 children and adults with albinism have been killed by people who believe potions and charms made from their body parts can be used to ensure wealth and good fortune. Many others have been condemned to death, with their arms and legs cut off.

Esther Moraa, born with albinism, was killed by her mother in August 2010. The mother told the court her husband had convinced her to kill the baby since it was bad omen and a disgrace to the family. She was jailed for one year but the husband went unpunished.

According to rights crusaders, the society’s discomfort with albinism is a cause to worry because of the outright discrimination and contempt at all levels. And stung by untiring bias in the last decade, albinos are now re-energised in their course, putting a case to authorities to ensure just solutions to their challenges.

They want the underlying social, medical and political circumstances that compromise the quality of their lives confronted.People with albinism gathered at a forum in Nairobi last week to take stock of their journey ever since their push for fair treatment began.

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At the forum, the Albinism Foundation of East Africa (AFEA) voiced concerns, saying despite decades of public sensitisation, Kenyans with albinism were still facing stiff discrimination across all crucial sectors. This trend, they say, spurs abuses and violations against them.

The foundation’s Managing Trustee Wambui Kairi says fruits of the new Constitution were yet to be realised in as far as threats to albinos are concerned.

“The problem is that people with albinism are not recognized in Kenya. Everyone is turning a blind eye against them. And the Government’s announcement last year that it will help in collecting data and giving us a reliable report on the major issues has not come through,” she said.

The foundation is concerned that despite calls for a headcount of people leaving with albinism by a parliamentary committee last year, the State is yet to act. The audit, if done, would to determine their numbers and set out concise ways of protecting them.

“If the new Constitution is implemented well and Kenyans respect it to the letter, it will be the turning point for persons with disabilities and vulnerable groups, especially those with albinism,” Lilian Wafula, the foundation’s Programme Officer, said.

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During the forum, albinos narrated heart-rending stories on how they were being threatened and mistreated in public places.

More than 100 albinos attended the one-day forum. Threats to their rights include discrimination in employment and education, lack of appropriate medical attention, sexual violence, killings and harvesting of body parts and social stigma.

Two years ago, Albinos were under siege in Tanzania for their body parts, which were being harvested for use in witchcraft rituals. Most of them fled to Kenya fearing for their lives. The threats against them in Tanzania, Uganda and Burundi made headlines, drawing global attention.

Although there are no official statistics, it is estimated the number of people with albinism in Kenya could be more than 30,000.

“Although we are heartened by the recognition of atrocities by governments around the world against people living with albisim, we strongly assert more must be done to stop these crimes against humanity,” says Michael McGowan, President of the Pennsylvania-based National Organisation for Albinism and Hypopigmentation (Noah).

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The lobbies, local and international, believe the solution lies in attacking public fear of difference through positive images and stories, speaking on behalf of the African albinism community to fight for positive change and acceptance.

They have renewed the clamour to have people with albinism accorded special attention beyond the basic rights, as happens to those with physical disabilities. They cite the new Constitution, which obliges the State to protect marginalised groups.

Article 27 of the new Constitution says the State shall not discriminate directly or indirectly against any person on any ground, including race, sex, health status, colour, age or disability.

Albinism is a genetic condition that is often misunderstood by the public and medical professionals alike and is frequently misrepresented by the media. Albinism is an inherited condition that affects about one in 17,000 people worldwide.

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