Albinism

The Danger of Living with Albinism in a Highly Superstitious Society

Five years have passed by, but the memories of his brother are fresh in Nixon’s mind. We met Nixon Lugadiru, a father of six, with albinism. While he speaks openly about his condition, he is clearly still very distressed by the circumstances in which he lost his elder brother, Enoch Lugadiru, almost exactly five years ago. Enoch died after an attack in the dark of night. Nixon is certain it was carried out by human traffickers who ascribe “special powers” to the organs of people with albinism and aim to profit from harvesting their body parts. Nixon fears he could suffer the same fate. It is a fear that is particularly strong around the time of elections in Tanzania, when campaigners may want to boost their political fortunes. Just ahead of last month’s voting in the neighbouring country, a Kenyan girl with albinism was abducted and has not been seen again. Born to two teachers into a well-to-do family of four children – all with albinism– Nixon lives in Hamisi Constituency in Vihiga County. About a kilometre away from his homestead, Gaimodi Forest is clearly visible. It is a refreshing, eye-catching green expanse, perfect for the appreciation of nature. The forest, spectacular as it is, reminds Nixon of his fondest memories of time shared with his brother. “When we were initiated in that forest,” he says, pointing in the direction of the breath-taking expanse of trees. “My brother took care of us (other initiates). He inspired us and told us to always read books.

I miss him. His death created a vacuum in our family.” Those memories are roughly pushed aside by shocking thoughts of October 2015 – a few days before elections in Tanzania. Nixon, 51 years old at the time, woke up to a heart-wrenching morning. He found Enoch lying in a pool of blood on his bed at home. The mud house where Enoch was attacked and his grave, right in front of it, remain constant reminders. “He was attacked in his own home at night. They cut his hands, his neck and cut off one of his fingers. He also had a deep cut on his ear,” Nixon says, describing the wounds using his hands. They rushed him to hospital. Barely two weeks later, before the family could come to terms with the atrocious attack, 56-year-old Enoch, breathed his last. A post-mortem showed he succumbed to his wounds. The family didn’t understand why anybody would want to kill a friendly, humble man who was loved by his neighbors and community, who were the main clients for his fumigation services. “My brother was a simple man. He used to walk with a knapsack pump, to fumigate people’s homes. It was a big shock, people entering his house and attacking him. We wondered how somebody can do that to him,”Nixon said. He could only think of one reason.

The attackers wanted to harvest his organs, but were ambushed before they could accomplish their mission. “They wanted to take his body parts because that time there was an election in Tanzania. This has been a very big blow to the family. My late mother’s health deteriorated after this happened to us and she died. You see, we are people who have been living here since my father married my mother, so we have been asking, why should this happen to us,” Nixon asked. With each passing day, Nixon fears he could be next since those responsible for his brother’s death roam freely, and are probably still in his neighbourhood. “The police came … (but) they have never given us the results. We have gone to the police several times to check on the investigations, but the killers are free and enjoying. I am still very bitter. Justice must be executed,” he said.

Nixon dreads leaving his home unaccompanied, because of the nasty jibes and derogatory remarks hurled at him in public, where some do not recognise him as a human being. “If a person with albinism is spotted, you see people pointing fingers at you shouting: ‘This is money – there is a million (shilling) person coming.’ We become traumatized, because people are looking at us as money. They make remarks like: ‘I will take you to Tanzania’.” His hope is that more sensitization will be done, for the community to understand that persons with albinism are fellow human beings – with full rights to life – and that their body parts have no “special powers”. “Why should you kill somebody with albinism so that you can get rich and win an election,” he asked, referring to the vote in Tanzania that just took place, and the election five years ago.

Nixon says that despite having albinism, he and his siblings were lucky to attend good schools and enjoy care and protection by their parents – both teachers. Robinson Mukhwana is also with albinism, but never had that parental love and care. We met him in Kisawai, a village tucked in the extreme interior of Kitale town, an agricultural area popular for maize production. The magical scenery of breathtaking Mount Elgon and Cherengany Hills, bounded by lush trees and bushes, created a mood of tranquillity with abundance of clean air as we drove on the highway, before diverting to join a rough road leading to Kisawai. The beauty spreads from hill to hill, valley to valley, with traces of homesteads and large fields with maize harvested carefully into bundles. Mukhwana never had the privilege to enjoy the scenery. Right from birth, he faced rejection and discrimination – even from his own family. He grew just as trees sprout and survive, unattended, in wild forests. And he was barely five years old when his entire family abandoned him. His father was the first to leave, because of the ‘bad omen’ that had befallen the family. The bad omen was Mukhwana, a little bundle of joy born with albinism in 1988. “My family left me because of this circumstance. We were born twins and my father couldn’t stand me. He said, ‘let the white child (Mukhwana) die and let the black one live’,” helearnt from his mother. The heart-breaking remarks came when Mukhwana and his brother were barely a year-old. “The black one died and the white one remained. And because of that, my father disappeared,” he recalled.

Three years after that, Mukhwana’s mother and his three sisters also left. Too innocent to understand, Mukhwana was abandoned. He recalls a night when a hyena almost killed him, adding: “…But God was there. A good Samaritan rescued me.” Afraid to continue living on his own, he tried to find a life with sympathetic strangers. But life became unbearable once more, pushing him to live as a street boy in Kitale Town. He was again rescued and taken to special schools, where he completed courses in computers and being a Disc Jockey (DJ). A few years after he had started working, he made friends with 28-year-old, Nathan Mutei. Their friendship blossomed and when Mutei promised Mukhwana a job in Tanzania, he was over the moon. They left Kitale by bus for Mwanza. In their hotel in Mwanza, Mukhwana overheard Mutei talking on the phone about “a human being and not a bone”. He still had no idea who the human being was – and what he had meant about the bone. “There is a guy who came to the hotel and told Mutei: ‘I told you I want a bone, not a full a human being.’ Then Muteitold the guy: ‘If you want bones, give me like two hours, then I will give you the bones’,” Mukhwana said. The buyer left, but called Mutei again a few minutes later. Mukhwana would later learn that the buyer on the phone had told Mutei he had changed his mind and wanted a full human being, instead of bones, and there was no reason to kill the human being he had brought. Later that afternoon, Mutei told Mukhwana to pack his things, since his new ‘boss’ would fetch him so that he could start his new job. “Mutei came with my boss and I asked the boss why he had kept us waiting for so long. The boss didn’t respond,” Mutei recounted. “So after I picked my bag and when I turned to the direction of my boss, I saw him holding a pistol on Mutei’s head.” He was shocked. When he asked the boss what was wrong, he showed him a bag filled with Tanzanian bank notes. The “buyer” introduced himself as an investigator and the rest of his police team, who by this time had stormed into Mukhwana’s room. They left for Mwanza police station where Mukhwana was told that his ‘good friend’ was an evil man with a criminal history. “The officer told me that they had been looking for Mutei. It was not the first time he had trafficked people with albinism. I was the third. The first was a body of a three-year-old girl from Kibomet in Kitale. The second, he took a 23-year-old boy from Matise in Kitale – the boy had been cut into pieces. I was showed a bone of the 23-year-old. It was at the police station. I was told he wanted to sell me like he sold the other two,” Mukhwana said. “I felt bad. I felt I was not like other human beings. I felt like I didn’t want to continue living under the sun again.” But despite the terrible trade, Mukhwana, now 32, says he is not afraid – because of the support he gets from the friends he has made since his ordeal. Their bonds are close and his trust strong enough that they are the people he now calls “family”.

In August 2010, Mutei was convicted and sentenced to a 17-year jail-term and a fine of more than $50,000 for trafficking Mukhwana. According to court documents, Mukhwana was to be sold for more than $250,000. Through the help of the Albinism Society of Kenya, Mukhwana received support and counselling that helped him come to terms with his close brush with death – planned by a man he called a friend. And Isaac Mwaura, a Kenyan Senator who heads the Albinism Society, said the shocking abductions continue –most recently of a child who disappeared, suspected trafficked, shortly before last month’s Tanzanian elections. “It is a problem we have tried to address all the way. What we have noticed is that it happens around elections, especially Tanzanian elections, you see there is an election in Tanzania and there is the loss of that child. We need to know what is happening there.” In the last decade hundreds of people with albinism have been attacked and mutilated or killed in sub-Saharan Africa – many of them for body parts intended to be trafficked for use in rituals or traditional medicine. Echoing John F. Kennedy’s words: ‘the price of liberty is eternal vigilance’, Mwaura says, “we got to keep the vigil so that tomorrow we do not have the stories of Robinson Mukhwana, Gabriel Kinyajui, Bianca Chacha, Adrian Simiyu, Bosibori ... including Enoch Lugadiru recurring in our day to day lives, because it actually beats the logic. It fights the psyche of that collective sense of being a human being.”