In Search of Normalcy
Albinism is a genetic condition that is characterised by lack of the pigment melanin.
It is a sunny day, stunning blue skies. A warm breeze whips tree branches violently and kisses the sweat dotted brows of passers-by. Gideon Mwakina, a radio host on Kibera-based Pamoja FM, takes a stroll in the neighbourhood, minding his own business.
But he is a celebrity in his own right, and people in the neigbourhood call him “Man Gidi”.
Out of the blue, three men emerge and grab Mwakina. “Leo tunakupeleka Tanzania (Today we will take you to Tanzania),” one man tells him.
“I thought it was a joke. But it wasn’t,” Mwakina recalls. Was he scared at the time? “No,” he says simply, “I am safe in Kibera, a lot of people know me.”
And he was. Some of his fans in the area witnessed the threats and soon a mob had surrounded the trio, who still had Mwakina in their hands.
The mob whisked him to safety and the trio were pummelled and almost lynched. Mwakina intervened and pleaded with the mob to let the young men go.
Mwakina is an Albino. And like most people living with Albinism in Africa, because of their pale, white skin, he is conspicuous in the sea of dark complexions. Albinism is a genetic condition that is characterised by lack of the pigment melanin. It is absent in the hair, the eyes and the skin, meaning that people living with Albinism have pale skin and very light hair. But it doesn’t just affect their appearances – the lack of pigment in the skin and eyes makes people living with Albinism highly susceptible to skin cancer and visual impairment.
A 2009 report by the International Federation for the Red Cross and Red Crescent Societies estimated 10,000 people living with Albinism, within East Africa, were displaced and in hiding. Between 2007 and 2009, 44 people living with Albinism, including children, were killed in Tanzania, and 14 others in Burundi. Most of these killings were ritualistic and fuelled by myths and witchcraft.
Some of these beliefs are self-reciprocating, like the idea that Albinos never die, they just disappear. The truth is, soon after an Albino is buried, the body is exhumed to be mutilated and sold – making it look like the person has just vanished.
Others see Albino body parts as hard cash. One hand can be bought for over USD $5,000.
Others think that if they are HIV positive and have sexual intercourse with an Albino they will be cured.
Still others believe a witch doctor can cure whatever cancer they have if they get a corresponding Albino body part.
The strange and mystical beliefs go on.
Living Between Races
In Kenya, there isn’t much information available on Albinos. “No one has ever done a survey on people living with Albinism, or factored it in, in the national census,” says Wambui Kairi, a managing trustee of the Albinism Foundation of East Africa (AFEA). “In Kenya we don’t know how many they are or where they are.”
Isaac Mwaura is an advisor on special interest groups in the office of the Prime Minister, a founder of the Albinism Society of Kenya and a person living with Albinism. He estimates a figure of 13,000 Albinos in Kenya, working with the South African estimate of Albinism occurring in one in 3,000 people and assuming we are of a similar gene pool.
80 to 90 percent of Kenyan children with Albinism attend schools for the visually impaired at primary level.
Kenyan’s numbers are also augmented by the fact that many Albinos from around East Africa, particularly Tanzania, come here seeking a safe haven. While it’s true that Kenyan incidences of witchcraft involving Albinos are close to non-existent, Albinos don’t always find safety within the country’s borders. Instead, they’re often targeted by kidnappers, as Mwakina was, because they can be sold in Tanzania for massive sums of money. And while Kenya is safer for Albinos, that certainly doesn’t mean it’s more accepting. Mwaura’s life hasn’t been easy. While he was fortunate to have a supportive mother and was able to get a proper education, he has faced numerous incidences of discrimination.
“Anyone with Albinism will tell you we always feel alienated. You are made to feel foreign.” Mwaura observes. He recalls an incident when he was waiting for his fiancé in Nairobi’s city centre on a rainy evening. He had sheltered under a building and some street children shouted at him in an ethnic language.
“They said in Kiswahili, ‘Wewe! Rudi kwako! (Go back to where you come from),’” he recounts. They saw Mwaura as a Caucasian. He simply laughed it off, “If I would have spoken to them in Kiswahili I would have scared them off,” he chuckles.
But Mwaura is stunned by the Kenyan attitude towards Albinos today, especially after the wide coverage of the killings in neighbouring Tanzania. He would have thought that with the sensitisation run by the Kenyan press, people would be more aware of Albinism and embrace people living with Albinism as fellow Africans.
Mwaura, however, is able to see the value of this contradictory treatment, saying, “You stand between races as an arbitrator, and you see the folly of imagining that because you are white you are superior. You also see the folly and the hypocrisy of saying because you are black you cannot be racist.”
Like Mwaura, Mwakina also grew up being called “Mzungu.”
“I didn’t like it,” he says in exasperation. His mother was constantly overprotective and never let him work or go to school unaccompanied – something he found very odd, considering his two younger brothers always had those freedoms. Mwakina’s schooling experience wasn’t typical either. In high school, people were curious. “People would walk up to me and touch me,” he explains. But Mwakina is quick to point out that there was an upside – he would always get the girl. “I never thought I would get those beautiful girls in high school,” he chuckles, “But they would always be interested in talking to me. The other boys would wonder.”
A Mother’s Love
Imagine the shock an African mother would experience giving birth to a light-skinned baby, and the obvious assumptions that will be made about her. While awareness of Albinism is growing, it’s certainly not a well-known condition, and many mothers of Albino children are accused of adultery with a white man. The women can be disowned by their husbands, and in some cases, like that of baby Esther Moraa, they are even convinced to kill their child.
Many mothers of Albino children are accused of adultery with a white man.
Dr. Prabha Choksey, an Ophthalmologist and a founding trustee of the Albino Foundation of East Africa, conducted research that revealed 60 to 70 percent of people living with Albinism in East Africa are single parent children or living with their grandparents. A statistic not too farfetched for Eunice Waithera, 23, and her mother Lois Wanjiku, 72.
When Waithera was born, Wanjiku faced some discrimination. People thought she had been unfaithful in her marriage and conceived a bi-racial child. As time went by, however, some members of the community familiar with Albinism were able to assure the family that Waithera had a skin condition.
Out of Wanjiku’s 12 surviving children, only Waithera, the last born, has complete Albinism. At the age of 3, Waithera fell ill and was diagnosed with pongo malaria and meningitis, which caused paralysis. Her right side is still not completely restored and her sight is highly impaired. At age 7, Waithera began schooling – and that wasn’t easy. She attended a village school where she had trouble because of her eyesight. “She was made to repeat classes because she didn’t seem to understand,” Wanjiku explains, “She couldn’t see well.” Later, she took Waithera to the Thika School for the Blind.
“I liked it there,” Waithera smiles, “We all learnt at our own pace. Some of the teachers were also blind so we all understood each other.”
Struggle to See
According to research done by Dr. Choksey, 80 to 90 percent of Kenyan children with Albinism attend schools for the visually impaired at primary level.
Dr. Choksey points out that the lack of pigment in the eye lets a lot of light enter through to the retina. The seeing area of the eye is not developed, and there is no fixation, which causes the eyes to dart from side to side. And this is what causes visual impairment.
“They are not blind. They don’t have to learn Braille. They can go to regular schools,” she states. “Mumbi [Ngugi], Kenya’s first High Court judge living with Albinism, went to the London School of Economics.”
Dr. Choksey ran a study with Albinos in 2007, which earned her an award for outstanding contribution to eye care in East Africa. She was curious to find out if there was a way to have their sight corrected. Looking at her initial sample of 10 people living with Albinism, Dr. Choksey was surprised to discover that they could see relatively well. “Most of them where myopic [short sighted] but had never seen an eye specialist,” she recalls.
Dr. Choksey approached then High Court lawyer Mumbi Ngugi to form an organisation, which later became AFEA. Today, she is a trustee of the organisation and offers her services free of charge to people living with Albinism. Zool Nimji, another founding trustee at AFEA, offered to pay for all the glasses that are prescribed for people living with Albinism. To date, Dr. Choksey’s efforts have improved the eyesight of 550 people living with Albinism across the country.
But it isn’t just Dr. Choksey on a mission to help people living with Albinism; some local artists have also joined in. Colour Kwa Face (Colour on your Face) is a campaign launched by ProHabo Entertainment, a company run by one of Kenya’s popular hip hop artists, Hubert Nakitare, better known by his stage name Nonini.
He was inspired to help Kenyans living with Albinism when he came across a documentary film, In My Genes, produced by Lupita Nyong’o. The film follows the lives of eight Albinos and highlights the challenges they face in day-to-day life – the biggest of which is the need for sunscreen. “It really touched me a lot. And that is what made me start the Colour Kwa Face campaign,” says Nonini.
With his team of 10, Nonini is out to collect 20,000 tubes of sunscreen, which they’ll distribute across the country to people living with Albinism. In the past six months Colour Kwa Face has already received 5,000 tubes and distributed 3,000.
Initiatives like these help Waithera a lot, considering she can’t afford the KSH 1,000- 1,500 pricetag for sunscreen. “I’d rather stay hungry than not have sunscreen,” she says. The discomfort of the sun is so intense that she doesn’t wash her clothes outside, she has to do it in the house. “There is a kind of heat, which is hard to describe, that just saturates my body. It is so uncomfortable,” she explains, her face flushing just talking about it.
Mwakina has attended several awareness seminars run by AFEA, as well as ones by the Albinism Society of Kenya, most of which revolved around helping people living with Albinism better understand their condition. But Mwakina feels that more should be done. “We talk of discrimination, but why aren’t we in the same room with those people who discriminate [against] us?” he asks.
Mwakina also makes it clear that Albinos often struggle to make an income, and Waithera boldly agrees. With the help of a KSH 10,000 grant from AFEA, she set up a knitting business, but she’s not able to access markets to sell her wares.
AFEA has just concluded a 12-month personal development and empowerment programme, which included an entrepreneurship component. Kairi, a trustee, states that the group of six graduates managed to save KSH 57,000 all-told from their weekly allowances of KSH 1,250, all in the hopes of starting their own businesses.
For Waithera, she hopes to one day become a masseuse to complement her knitting business, as it’s something she’s good at. “My sisters come to get massages and they leave happy,” she smiles.
In one of their earlier conversations, Mwaura requested Okeyo to buy a newspaper and turn to page 18. The story was on an event he had presided on in special needs advocacy. He asked Okeyo if she would still like to be friends with someone like him. She was initially concerned, but not because of Albinism. Rather, Mwaura’s designation and position had her a bit intimidated, but once she got over it she was drawn to him.
“Albinism was never an issue,” she explains, “In fact it even arose my curiosity.” When she started seeing Mwaura, she was drawn to meet more people living with Albinism and to understand it better.
While they’ve been together for three years, they did face challenges initially. It wasn’t simply about Albinism – they’re also from two different ethnic groups, which has caused some issues with a few people in and around their families. But both parents were very supportive.
Okeyo was concerned that Mwaura’s mother would not accept her, but to her surprise Mwaura’s mother was concerned about one thing only. “She asked me if I loved her son.” When Okeyo said yes, Mwaura’s mother simply replied, “Anyone who loves my son, I too will love them,” Okeyo recounts.
Mwaura was the first person Okeyo had ever met with Albinism, but for her it was a blessing. “Basically I looked beyond Albinism and I liked what I saw.”
The life Mwaura and Okeyo are planning together is possibly – hopefully – indicative of the lives all Kenyan Albinos will one day lead. Yes, there are special considerations they have to keep in mind, but with the acceptance of those close to them and a growing acceptance in society, the future could possibly hold a simple yet beautiful thing, a normal life.