At least 13 people with albinism have been killed in the last two years, according to the UN. Actual numbers are likely higher. Superstitions or myths about the albinos' magical powers fuel these attacks.
MAPUTO — When Momade Ali Faque was born, he was rejected by his father in the first few days of his life and abandoned in the streets of Mozambique’s northeastern city of Nampula. He was soon rescued by his grandfather who found him covered in dust. His fragile health condition led him to drop out of school in the ninth grade. He suffers from acute visual impairment and feels discomfort and pain if he stands in the sun. His eyes burn and his skin is hypersensitive. He has a genetically inherited condition resulting in the lack of melanin pigment in the hair, skin and eyes causing extreme vulnerability to sun exposure. Faque has albinism.
People with albinism are more susceptible to the harmful effects of ultraviolet radiation. They can be distinguished by their skin tone, twitchy eyes, and have white or no hair.
Some people in society find it hard to accept them.
Faque grew up being bullied and discriminated against. He had an inherent musical talent, which eventually helped him make a living and survive. In the music world, Faque is widely known in his country.
In his songs there's always an overt or underlying message against racial discrimination. Faque devotes most of his time to raising awareness about albinism.
“There are deeply rooted prejudices and myths. People believe that albinos are like diamonds and need to be killed. They have superstitions but they do not know what albinism is,” says Faque explaining that this is not a communicable disease but a genetic disorder.
A worsening situation in Africa
For albinos, sub-Saharan Africa is a hostile place. They live in constant fear in countries such as Tanzania, Malawi and Mozambique, where they are hunted down and face being mutilated, raped and abducted.
“People with albinism are kind of sociological outcast,” says Ikponwosa Ero, the UN Independent Expert, a human rights advocate for albinos. The 37-year-old Nigerian lawyer, who also suffers from albinism, was the first to be appointed in 2015 by the Human Rights Council to examine the socio- economic conditions of people with albinism.
“These people remain consistently outside of development plans because they are not necessarily being considered as a group that needs help. We are talking about the intersectionality of both appearance and disability, and years of historical neglect. There has been very little attention on this group if any,” Ero says.
An albino child is seen as a burden on the family. Society tends to believe in rumours and myths such as albinos are evil spirits and having one in the family is a sign of bad luck. As a result, they are neglected by their own families.
“When I go to these countries, I only have to ask one question, "How is life for you with albinism in your country?’" Ero says. "And in most situations, their first reaction is to break down crying. They say that nobody has ever asked them (about their well being). Even me, as a person with albinism, I don’t expect that. It is very intense what they go through.”
In some African societies, albinos can be targeted for their blood, hair and body parts as these can be worn as charms which are thought to bring prosperity. But others see them as ghosts.
Ero points out that many families with a albino member do not conduct funerals in public as they fear their graves might be dug up and their corpses stolen. “They bury the person quietly without putting a visible mark on the grave so no one takes the body. Over time people say that they don’t die, maybe because people are hiding their funerals.”
Besides there is an unfounded myth that having sex with women with albinism could cure HIV/AIDS. “You have a lot of women with albinism that have contracted AIDS through this kind of ritual rape,” says the UN expert.
If albino children are lucky enough to survive, many of them do not go to school or have to drop out as was the case with Faque. Hence their ability to earn a decent wage is affected.
Raising awareness through music
In the mid-90s, when Faque was in his 20s, he ventured into the world of music and moved to the capital Maputo to hone his love for music. By working as a street seller, roasting peanuts and preparing tobacco, he earned enough to buy his first guitar. He soon began to perform on the streets and record his songs on cassette tapes.
“I enjoyed singing in the streets and I realised that some people were cheered. I began learning on my own with music books. When I received a plane ticket as a donation to fly to Maputo, I was able to launch songs and had them played in the Radio Mozambique,” Faque says.
Through his musical style, a mix of rumba and the traditional N’sope and Tufo of the Macua people from the district of Angoshe, he earned a reputation of being an exceptional musician who also fought for the rights of albinos.
One of his most famous songs he wrote in 1991 is named "Kinachukuru," which is about intolerance.
“The lyrics reveal my childhood. This song is a message thanking God for giving me strength. In this song, I lament for myself being abandoned and despised by my father because I was an albino,” he says.
Faque is now 51, in his second marriage and the father of three daughters. He currently lives with his wife Zulmira and the 12- and four-year-old Fatima and Felicidade (meaning ‘happiness’ in Portuguese) in a two-bedroom house under construction in Marracuene, a town on the outskirts of Maputo.
Though he enjoys the sun, he needs to cover up and never forgets to use sunscreen. Faque relies on donations and the help of friends to obtain skin creams or to go to ophthalmologist for eye checkups.
“I have a serious visual impediment because of the lack of melanin in the eyes. I have to wear spectacles that adjust with the luminosity of the environment. A lot of people have embraced me and taken me to ophthalmologist appointments.”
Lack of information and public policies
There is scarce information available on people with albinism. A 2006 study from the World Health Organisation (WHO) estimated that prevalence of albinism suggests the existence of tens of thousands of people living with this condition in Africa.
This scientific research reiterated the need for the increased awareness of and public health interventions for albinism in order to better address the medical, psychological and social needs of this vulnerable population.
An overall estimate of albinism prevalence ranges from one in 5,000 to one in 15,000 people. There were cases reported in which prevalences were as high as one in 1,000 for selected populations in Zimbabwe and other specific ethnic groups in Southern Africa.
In some countries such as Kenya, Tanzania and Namibia, censuses have been conducted on the albino population, but this has not been taken place yet in Mozambique.
Nuno Bento, the executive delegate of Kanimambo, an Albinism Support Association founded in 2016, says the Mozambican government has taken a step forward in setting up an inter-governmental commission led by the Ministry of Justice and the Ministries of Education and Health to draft welfare policies for albinos.
“We have done an incisive work in schools so that the teachers are aware of the visual impairments of pupils with albinism and put them in the front row near the board in the classroom. Just by doing that, it makes a big difference in their learning process. We also co-ordinate medical missions to offer free of charge appointments with physicians for children and adults to especially take care of the skin and their visual condition,” says Bento.
For the first time Amnesty International acknowledged the situation of people with albinism in Mozambique in its 2017-2018 report. It estimated that 30,000 people with albinism experienced discrimination and were ostracised as well as incidents of persecution have increased.
At least 13 albinos have reportedly been killed “although figures are likely to have been greater,” according to the study. Most killings took place in the central and northern provinces of Mozambique, the country’s poorest regions.
The UN expert agreed that although Mozambique had progressed, the country was still far behind in implementing public policies.
Faque dreams that one day his country will embrace the people with albinism. “Not only in material terms with sunscreen and spectacles, but in sensitising the society so that they know that an albino person is no different from any other human being," he says. "We are as normal as anyone else.”