In many parts of Africa it is dangerous to be born with albinism. The genetic condition – that results in the lack of pigmentation in the hair, skin and eyes – is still strongly associated with witchcraft in some African cultures leading to brutal killings and dismemberment.
In Malawi, in the continent’s southeast, the limbs of a person with albinism are used in rituals as they are thought to have magical powers that bring wealth and good luck. They fetch a high price when sold to witch doctors, and many still hold the belief that the bones of a person with albinism are made of gold.
Considered easier targets, women and children affected by the condition are particularly vulnerable to attack. It is common for parents to withdraw their children from school for fear they will come to harm, and abductions are a frightening prospect.
One mother tells her heart-wrenching story in a video produced by Amnesty International where she explains how a group of men entered the room where she was sleeping with her twins who both have albinism. One of her children was taken from her arms and she was struck by a machete as she tried to hold onto him.
It’s on the rise
According to a report released last week by Amnesty International, the hunting of people with albinism has recently seen a sharp increase. In April alone, four people were murdered in Malawi, one of which was just a baby.
A total 45 cases of murder, attempted murder, abduction and attempted abduction were reported last year, and there is concern the numbers don’t accurately represent the scale of the issue as many killings in rural areas go unreported.
“The case [in Malawi] is one of the most difficult ones right now in terms of the attacks having increased since last year,” the UN’s independent expert on Albinism, Ikponwosa Ero tells SBS.
“The country is going through some very harsh economic times… and they are struggling at the same time with a food crisis and corruption.” This combination is a particularly challenging one as it increases the temptation for a monetary reward for perpetrators and leaves the government “weakened in capacity to respond to the issue,” says Ms Ero.
She adds however, that “what they do have is good political will and everyone has condemned the attacks publically.”
Where poverty comes into the conversation
There is a widespread belief in witchcraft in many communities in Malawi, even among people who identify as Christian and Muslim. However it isn’t only believers who are attracted to the prospect of making money from the sale of limbs.
The abject poverty faced by both victims and perpetrators heightens the risk of attack as “the victim is poor and hence she can’t afford a proper house with a proper door and a proper lock so people can break in easily,” Ms Ero says. “The perpetrator is also poor and maybe he doesn’t care about witchcraft beliefs but he thinks if I can get a limb, I can sell it, I make ‘x’ amount of money.”
The Daily Mail reports that in neighbouring Tanzania, limbs can sell for up to AUD$5,000 and a whole person for as much as $95,000.
Recently there has also been a rise in the illegal exhumation of graves, with Ms Ero saying, “in Malawi, a lot of the cases seem to be graveyard robberies, which shows people probably don’t want to kill someone but they want to make money.”
She notes, however, that little forensic work has been carried on the bodies to confirm their time of death. Amnesty Intentional have expressed concern that “poor police investigations may also have allowed perpetrators of murders to avoid facing serious charges, particularly in cases where suspects were arrested in possession of human bones.
“Amnesty International believes that some suspects charged in 2015 with ‘possession of human bones’ – because police assumed that they had been obtained through grave robberies – may have been involved in the actual killings.”
The feeling on the ground
Ms Ero, who grew up in Nigeria, has albinism herself; however, a recent visit to communities in Malawi left her unable to imagine how people are able to survive in a constant state of fear. “If I go by the situation in Malawi, I cannot imagine,to be honest, what they are going through. I tried to put myself in their position but I got so terrified,” she says.
“There was one village I visited where they were very happy and welcoming [of me] and they had people with albinism gathered, and one of them says next time you come you have to spend the night here, stay with us, and I was like no, no thanks. I love the village and I love village life so I would have taken up the offer if I could but I don’t think I would have slept”.
There was no denying the strong sense of fear among the people gathered and Ms Ero says there was also a lot of anger that not enough is being done to protect them.
“There was one person who stood up and said we need to start killing these people who are doing these things. He basically said something about mob justice and everyone applauded. I was terrified because I understand why they feel that way but I don’t support the death penalty ... they are afraid, they are helpless, that was palpable,” she says.
In some particularly tragic cases, it has been a family member of a relative who organises the attack. Nine-year-old Harry Mokoshini was abducted from his home in February and killed, according to Amnesty International; his uncle was arrested in connection with the murder after his severed head was found by police.
“I don’t know what they’re going through psychologically. It must be hard to just not trust anyone since family has been involved in some of these cases,” Ms Ero says.
Why greater understanding in crucial
The Association of People with Albinism in Malawi estimates that 7,000 to 10,000 people have albinism in Malawi alone. It is estimated that one in every 5,000 to 15,000 people is born with albinism in Africa and as many as one in 1,400 in Tanzania.
It’s a genetic condition that is passed to children when both parents carry the gene and results in visual impairments and a higher risk of developing skin cancer.
“Education needs to be intense and thorough and cross cutting,” says Ms Ero. “Everything changes with awareness. Educating the public on the one hand and then educating people with albinism themselves on the other because they too need to be educated, both formally at school and informally, about their condition, how to take care of themselves, and how to advocate for themselves.
“Some of them have internalised the myths and the lies because there was no other source of information. I know a couple of people who actually believed they were going to disappear because there’s a myth that people with albinism don’t die, they disappear at a certain age.”
Ms Ero also believes that people with albinism should be represented in higher numbers on television advertisements and on billboards in order to normalise the condition and lessen the idea of a person with albinism being “something rare and mystifying”.
The stigma that surrounds them
Apart from the danger to their lives, people with albinism often face discrimination within their communities.
Whenever you have the main population showing skin tones where the contrast is stronger between the general population and people with albinism, then discrimination is often stronger,” Ms Ero explains.
She believes much of the stigma that surrounds the minority has to do with “the shock in appearance of a person with albinism” as well as a “lack of understanding of the condition, how it happens – that it’s a genetic condition alone - and then proliferation of misunderstanding”.
Popular culture also has a role to play with Ms Ero explaining, “If you look at literature, film, how albinism has been portrayed is quite bad.
“It’s people who don’t understand it that write about it. Because albinism is rare, the number one source of information for the average person is this work of art and these works of art have perpetuated misconceptions. It's quite sad that most people encounter albinism with wrong information presented to them so this probably contributes to the stigma.”
What’s being done
Today is International Albinism Awareness day and in Malawi it will be marked under the slogan, “Together We Must End Human Rights Violations Against People with Albinism”.
Ms Ero will also shortly be hosting the first regional forum on albinism where the agenda will involve agreeing on specific measures that will ideally be adopted at an African Union level. She aims to create a “regional standard and something that can be used to hold governments accountable”.
Meanwhile on Twitter, users are sharing the hashtag “Albinism is just a colour” and images of people with the condition to show they are just like everyone else, only with less melanin.