NAIROBI (TrustLaw) – In Kenya, ignorance and prejudice against people with albinism is so great that one mother left her baby, Amos, out in the sun, hoping that he would turn black.
By the time he was five-years-old, he had skin cancer.
He later died.
Such tragedies inspired Mumbi Ngugi, 49, to set up the Albinism Federation of East Africa, which is working to improve the lives of an estimated 2,300 to 8,000 Kenyans with the condition.
People with albinism lack the pigment melanin, which absorbs ultraviolet rays. This makes their skin and hair white and their eyes white or pinkish.The gene is inherited from both parents.
Extremely sensitive to the sun, they need sunscreen to protect themselves from cancer. Lack of pigment also can lead to poor vision, requiring glasses.
The social stigma is equally damaging.
“The hardest thing about albinism is the attitude of the community towards us,” Ngugi told TrustLaw.
“The ones who don’t understand what our capabilities are; that we will not contaminate your food; that albinism is not catching.”
Ngugi has defied the odds to become a successful lawyer and human rights advocate.
She attributes her success to luck, downplaying the immense challenges she has overcome.
LIVING IN THE SHADOWS
One of her earliest memories is walking to Sunday school in her village, trailed by mocking laughter.
“You begin to hide very early. You want to hide to shield your skin from the sun but you also want to hide to shield yourself from what people say,” she recalled.
“It really begins to get to you and it can really shut you down in a sense, emotionally, even physically, because you are not able to interact, to relate to people.”
Unlike 90 percent of Kenyan children with albinism, Ngugi was not sent to a school for the blind to learn Braille, thanks to her mother’s insistence that she could see.
Although she couldn’t read the blackboard, Ngugi learned to make her own notes or copy from her desk-mate.
“I would hope they had good handwriting,” she joked. She went on to study law at the prestigious London School of Economics.
A MOTHER’S LOVE
Ngugi’s uneducated mother faced immense stigma. Neighbours said she had slept with a colonial officer, the only white person they had ever seen.
“In-laws and other women around her would laugh, ask strange questions. ‘What do you feed this mzungu (white person) of yours?,’” said Ngugi.
“I think it’s easier for me than it is for my mother,” she said, with characteristic modesty.
“The ability to accept your child and to bring it up with the rest of your children and to love it in the same way… it’s hard,” she said.
In Kenya, 60 percent of children with albinism grow up in single-parent homes. Fathers usually walk out, unable to accept their own babies.
Mothers sometimes abandon them too.
“I know of mothers who had a very difficult time even bonding with a child with albinism because the reaction of the people around you makes you feel like you have given birth to a monster,” said Ngugi.
“There are mothers who can’t wait to get rid of their children into those special schools. There are teachers in Thika [School for the Blind] who tell me some children never go home because their parents don’t want them.”
Some parents of children with albinism do not take them to school at all, believing they are mentally retarded.
IMPORTANCE OF ACCEPTANCE
Self-esteem is a huge problem for most people with albinism.
Dehumanising names worsen their self-image, like “albino” and “zeruzeru”, a Tanzanian term which means that the devil exchanged the real child for the one with albinism.
The most recent nickname is pesa, Kiswahili for money. In Tanzania and Burundi, more than 100 people with albinism have been murdered or maimed for their body parts. People believe that they can be used in witchcraft to bring wealth.
While Ngugi accepts herself today, it has been difficult.
“When I was 20, I would be ashamed and embarrassed about the fact that I couldn’t see.
“I am comfortable with it now. It’s not perfect but this is it really. This is me,” she said.
“It still gets very uncomfortable when you go to a strange place and the whole world wants to stare at you. But I don’t wish I was black. I wish they understood so they would stop all the staring.”
The AFEA is lobbying the Kenyan government to provide free sunscreen to people with albinism, which Ngugi estimates would cost Ksh25 million ($300,000) a year – much less than radiotherapy.
The organization wants children with albinism to attend mainstream schools and be provided with glasses and large type text so that they can read.
“The challenge is on all of us to make a difference so that the children who are born with albinism can lead a better, more fulfilled life without fear of being murdered for their body parts or developing cancer and dying before they are 40,” said Ngugi.