Referring to the stigma he faces in Somalia for having albinism, 25-year-old Elmi Bile Mohamed says, “People tell me I’m a cannibal and I’ll eat their children. They’re terrified of me.”
Mr Mohamed has struggled to find accommodation in the capital Mogadishu since leaving his rural home in the central Hiraan region. His brothers also suffer from the condition.
“We were constantly insulted and tortured by our community. We were beaten up and mocked for the pale color of our skin, hair and eyes,” he says.
“I thought I would find a better life in Mogadishu, but I was wrong.”
Mr. Mohamed searched and searched for a room in a shared house, but was rejected every time.
Eventually, he paid $30 a month to live in a warehouse in the Hamar Weyne neighborhood, the oldest part of the city.
“People think I’m cursed,” he says. “They often throw a mixture of salt water and raw eggs on my doorstep, thinking it will protect them from me.”
Mohamed eventually found a job as a cleaner in a restaurant and earned between $1.40 and $4 a day.
It did not take long.
He was fired after customers stopped eating there because they feared he would infect them with albinism, even though it’s not an infectious disease but rather a genetic condition.
“I went from restaurant to restaurant looking for another job, but nobody wanted to hire me,” he says. “I ended up on the street holding up a sign with my phone number on it so people could make donations through mobile payments.”
The money he earns from begging is rarely enough to cover his meals and rent, let alone the sunscreen and glasses he needs to protect his sensitive skin and eyes. People with albinism have little or no melanin, the pigment that colors eyes, hair and skin and provides protection from the sun.
“I can’t afford to buy sunglasses,” says Mohamed. “There is so much dust and highly polluting traffic in the market I beg. My eyes are in constant pain and my vision is deteriorating rapidly.”
“Sometimes people give me their leftovers to eat. Other times I have nothing.”
Mr. Mohamed’s dreams of fleeing to Mogadishu to earn money to send to his family, especially his albino brothers, have been shattered.
It is not clear how many people with albinism live in Somalia because no data is available. The country has been plagued by conflict and instability for more than thirty years, making it impossible to collect reliable information.
Earlier this year, about 80 families with albinism in Mogadishu came together to form an association, Somali Albinos, which they hope will raise awareness about their plight and help reduce stigma.
So far, they have received 86 bottles of sunscreen from Somali women living in the diaspora.
It is recommended that people with albinism wear high factor sunscreen, protective clothing and sunglasses to reduce exposure to sunlight.
Their lack of melanin puts them at increased risk of sunburn and skin cancer. It also leads to eye problems, as melanin is involved in the development of the retina, the thin layer of cells at the back of the eye.
“Other Somalis with disabilities have formed organizations that lobby for aid from the government and international organizations,” said the group’s president, 40-year-old Mohamed Abukar Abdiqadir. They now have rights. We do not.’
“I was elected leader of our association because I am a hero and I never give up,” said Abdiqadir, who has six children. Like him, they all live with albinism.
He collects a living by selling dried and canned food from a cart at the Hamar Weyne market. He always wears a hat to protect himself from the bright sun.
“The reason people hate and fear us is ignorance,” he says.
“The harm and discrimination we face should not stop us from fighting for our rights and feeding our families. When Somalis learn about albinism, they will realize that we are human beings like them.”
For now, the prejudice against people with albinism is so severe that children with the condition are rarely educated.
“I took my kids out of school because they were stoned to death every day,” says Asha Gele, whose two sons have albinism.
“Their sensitive skin was badly damaged by the rocks people threw at them, so now I keep them in all day,” she says. “They won’t get an education, they won’t learn how to play with other kids, but at least they’ll be safe.”
The family pays $40 a month to live in a makeshift two-bedroom house in the Huriwa district of northern Mogadishu. The walls and roof are made of old cloth and broken, rusty corrugated iron, not enough to keep the sunlight from streaming in and burning the children’s skin.
“I used to earn decent money selling vegetables at the market,” says Mrs. Gele. “I had to give up my business to stay at home with my children. Now we struggle to make ends meet on the four to six dollars my husband earns daily as a rickshaw driver.”
Ms Gele says her marriage is on the rocks because her husband blames her for giving birth to children with albinism. He accuses her of bringing bad luck to the family.
“The people I love most – my husband and my relatives – avoid my children. My own brother keeps his distance because he thinks they will infect him with albinism,” she says.
“But I will always be by their side and defend them no matter what. I will be patient and I will never neglect them. They didn’t choose to live like this.”
