Dangerous myths persist about people living with albinism, but a community in Malawi has had enough.
A group of children shout excitedly as they chase after the car passing on a gravel road at the foot of Mount Mulanje in southern Malawi.
“Did you hear those kids outside? They are saying ‘the car has taken money, millions of money is passing’ — because I’m in the car,” says Elizabeth Machinjiri.
She looks different to the rest of the passengers in the car, which is heading to Phalombe, about 85km east of Blantyre.
“They think that through our blood they can get riches,” the middle-aged woman remarks.
Looking in the car’s side mirror, Machinjiri pats her blonde afro. She has albinism, a rare genetic condition that leads to a lack of melanin in the hair, skin and eyes. As a result, her coarse hair is blonde and her skin is white, but Machinjiri is a black woman.
People who look like her stand out because most of the African continent’s population is dark-skinned.
“Growing up I learned that persons with albinism don’t live long. While I was at school my friend told me that: ‘Why are you bothering yourself coming to school? You will not reach the age of 40.’ It’s when I got an idea of getting married and having my children before the
age of 40. So I got my child at the age of 13.”
Machinjiri, who is the secretary of the Association of People with Albinism in Malawi, didn’t die at 40. She will be turning 45 in October.
Living in fear
“It seems here in Malawi people do not understand. They think that a person like me doesn’t die therefore we have some magical power in our bodies that can heal diseases. They also think that by using our body parts, our blood, our hair, they can get riches.”
Because of these beliefs, Machinjiri and other people with albinism live in fear. “I am very, very scared, because you never know when a person can just try to kidnap you,” she says.
A recent study by Amnesty International, the global activist organisation, found that people with albinism often face discrimination, which results in abuses ranging from ridicule by family and community members to more serious cases of violence “that include killings, abductions, mutilation and infanticide”.
According to the study, “attacks against people with albinism in Malawi were first noticed around 2009, but there was a marked increase since November 2014”.
The report estimates that at least 18 people have been killed since November 2014; five were abducted and are still missing. The United Nations estimates that more than 65 attacks have been reported to the police in the same timeframe.
[WATCH] Victims of superstition: The dangers of living with albinism is Africa
‘When I grow up I want to be an accountant at the bank,” 14-year-old Chipililo Maiden says, while wrapping his arms around his knees. He buries his face in the crevice of his elbows.
Maiden squirms under the attention of the rest of his neighbours who have gathered under a big tree in the local chief’s yard in Phalombe. But his grandfather, Caverson Maliko, beams with pride.
“At school he is brilliant. He even knows how to use a computer,” says Maliko.
The 72-year-old and his grandson are inseparable — they go everywhere together. Maliko walks Maiden to school every morning and meets him at the school gate in the afternoon for their walk home.
“I enjoy the trips to school,” says Maiden. “I like walking with my grandfather.”
The air is hot and dry but he is dressed in long trousers, socks and shoes. His long-sleeved shirt is torn, revealing pale skin.
Albinism presents other health risks
Melanin is the agent that protects the skin from the sun’s harmful rays and because Maiden has albinism, he does not have any melanin in his skin and eyes.
According to a 2012 article in the journal BMC Dermatology, albinism and exposure to the sun
are leading factors in the risk of developing skin cancers. But he does not have sunscreen, so wearing long-sleeved clothing is the only way he can prevent sunburn.
“But the children at school mock me. When they see me they say: ‘Money, money, money.’ Others say: ‘This one is not allowed here, he must die,’?” says Maiden.
There are an estimated 10?000 people with albinism in Malawi, a tiny minority in the country’s population of 16.36-million people, says Amnesty International official Simeon Mawanza.
But these are not official figures.
The ministry of gender, children, disability and social welfare says it has recently completed a study that is expected to establish an exact number of people with albinism.
Malawi is only one of 23 African countries where “people with albinism face extreme forms of discrimination that include abductions, killings and mutilations on the basis of superstitions and myths about their pigmentation”, says Mawanza.
In February, a teenager in South Africa’s KwaZulu-Natal province was sentenced to 18 years in prison for the murder of his girlfriend after a traditional healer told him that mixing her body parts in muti would make him rich.
Similar cases are increasingly being reported in several villages around Malawi, including Phalombe, since the end of 2014.
“When Chipi was born there were no problems. But since the attacks started happening and we know that someone might try to abduct him. We have to be with him all the time,” says Maliko. “That is why I take him to school. We can’t allow him to go alone.”
Twenty-one-year-old Martha Chipesu narrowly survived an attempted abduction. Last year while collecting water at the local borehole, she heard that someone was planning to kidnap and sell her to buyers in Mozambique.
When Chipesu told her sister what she heard, her sister flew into a rage and kicked her out of her home. Left with nowhere to go Chipesu and her two children went to her church for protection.
“My family came to the church and convinced me to go back home,” she says, fiddling with a piece of rock.
That night, while Chipesu and her children were asleep at home, a man broke down the door. But before he could get to Chipesu he was spotted by neighbours who stopped him.
“When the police questioned the man after he was arrested we learned that Martha’s sister and her husband found someone in Mozambique who wanted to buy Martha. The buyer was going to only chop the parts which he needed and then the rest of the body will be buried and the sister would keep her children,” says Machinjiri.
The Association of People with Albinism works closely with the Phalombe branch of Lawilink, a nongovernmental organisation that helps people living with albinism.
“When we heard about Martha’s story we knew that we had to do something to stop this from happening,” says Annies Luka from Lawilink.
Working with the local chief the organisation held meetings — and an “Albinism festival” in December which was also attended by the police and politicians.
“We wanted to sensitise the community, to show them that these people are just like us,” says Luka.
The ministry of gender, children, disability and social welfare has called for tougher sentences for those who are found guilty of crimes against people with albinism and a national technical committee was established to come up with a solution.
“Work has also been intensified with Interpol police of Mozambique, Zambia and Tanzania to arrest suspects that have crossed borders and address inter-border albinism-related crimes,” says the ministry’s Lulu Bandazi.
She says the state is in the process of reviewing legislations such as the Witchcraft Act, Anatomy Act and the Penal Code to include crimes against people with albinism.
But Mawanza argues that the Malawi government’s response is inadequate, saying: “The police are not properly resourced to investigate all of the cases that are reported.
“For instance, in cases where bones are found, we have asked how the police reunite the bones with the families and it’s not clear because they don’t use DNA testing to verify who the bones belonged to. They say they can’t afford it.”
Mawanza believes the violence is fuelled by the high levels of poverty in the country.
Forty percent of the country’s annual budget is made up of donor funding, but this dried up in 2013 “following a corruption scandal in which government funds were siphoned by some government officials through fraudulent payments and loopholes via the country’s Integrated Financial Management Information System platform, known as Cashgate scandal”, according to the Amnesty International report.
In the World Economic Forum’s 2015-2016 Global Competitiveness report, Malawi ranks 135th out of 140 countries. The situation is exacerbated by the floods that hit the country last year and the drought that caused the state to declare a state of emergency in April.
“If the state does not address the root cause of the violence and discrimination, there is no good chance of winning. Because what we are seeing now is a knee-jerk reaction,” says Mawanza.
Luka believes the meetings held in Phalombe have made a big difference in how people with albinism are treated.
“Since we’ve had those meetings the violence reduced a bit. Before the meetings, people with albinism were mocked and called names when they walk down the street, but that is no longer happening.”
When there are attacks, residents step in and help, she says.
One such example is the attack on Violet Nyalugwe. In February she was walking home from school with her friends when a group of boys followed them.
“They were mocking and shouting, trying to provoke me. But when I didn’t respond they got angry and attacked me. My friends tried to help but they couldn’t,” says Nyalugwe.
The attack was stopped by other residents and she escaped injury. She believes that the meetings hosted by Lawilink have helped.
“Now that I have people from my village to protect me, I am no longer scared.”
Uncertain future for people with albinism
Back in Phalombe, Machinjiri has no illusions about what lies ahead for people like her.
Before she gets into her car to start her journey back to Blantyre, she takes a bag of second-hand clothing from the boot of the car. “I think this will fit Chipi,” she says holding up a faded, long-sleeved T-shirt.
Smiling, she waves goodbye to Luka as the car drives on to the main road. She is not sure when she will come back to the village — Machinjiri relies on her friends to escort her whenever she travels to rural areas. She has to wait until one of them is available.
“The discrimination has always been there, but at first it was silent. I am very shocked that we have these killings in Malawi,” she says throwing a light scarf over her arm to block the sun.
“I never understood why my family was so overprotective of me when I was growing up. My father used to take me to school and fetch me every day. When he couldn’t do it himself, he would send someone to escort me.”
Sitting back in her seat, Machinjiri takes a bite of her sandwich. After a couple of minutes she turns around, points at her 13-year-old grandson in the back seat and says: “Now I have this one to be my bodyguard.”