Living with albinism in Mozambique

According to Amnesty International there are an estimated 30,000 living with albinism in Mozambique who faced discrimination and ostracization last year, while at least 13 people were killed.

Albinism is a rare, non-contagious, and genetically inherited condition which affects approximately one in 20,000 people in Europe but between one in 5,000 and one in 15,000 in sub-Saharan Africa. As a result of the lack of melanin pigment in the hair, skin and eyes, people with the condition are vulnerable to sun exposure. But in parts of Africa, people with albinism face kidnapping, violence and murder based on the belief that their body parts can bring people magical powers, luck and wealth.

For Ikponwosa Ero, the United Nations Independent Expert on the enjoyment of human rights by persons with albinism who visited Mozambique on a fact-finding mission back in 2016, the condition is still profoundly misunderstood, both socially and medically.

“These people remain consistently outside of development plans because they are not necessarily being considered as a group that needs help,” argues Ero, a Nigerian lawyer who became the first UN expert appointed to the position in 2015.

Sufferers face a double marginalisation, Ero tells Equal Times: “Albinism is a unique condition. It is an intersection of disability and colour. Disability has created so many barriers, and when you add the issue of colour, it is a problematic factor in our society.”

Skin cancer is thought to be one of the major causes of death for people with albinism living in Africa, while fewer than 10 per cent of people with albinism live for more than 30 years and only two per cent live until age 40, according to Kanimambo, a Portugal-based albinism support association founded in 2016.

Civil society organisations have indicated that there are thousands of people living with albinism in Mozambique, although exact data is inconclusive and scarce. But the scale of the problems facing people living with albinism has put the issue firmly on the map in Mozambique. In May 2017, a two-day regional forum on protecting albinos from trafficking in persons was held in Pemba, northern Mozambique by the International Organization for Migration, UNICEF and various national and regional government agencies, while the hashtag #TodosIguais (#AllTheSame) helped to create awareness of this issue on social media.

But as this photo essay by Flavio Forner demonstrates, there is still a long way to go. As Inocêncio, one of the people profiled tells Equal Times: “People think that an albino is not a person. We are discriminated against. People think we have no worth.”

A woman with albinism protects herself from the sun at an open market in Cauchena, Tete, west-central Mozambique.
Photo: Flavio Forner

Although there is no accurate data on the exact number of people living with albinism in Mozambique, many live in fear of being hunted down, kidnapped and mutilated. Most albinos in Mozambique do not finish school and have difficulties being integrated in society. There are unfounded superstitions that their blood, hair and body parts can serve as amulets. Sensitivity to the sun also poses a huge problem in Africa, not only for health reasons but in trying to avoid too much sun-exposure, many albinos are unable to work, thus relegating them to a life of poverty and social exclusion.

Inocêncio Machava has been unemployed for the last three years due to the prejudice he suffers as a person living with albinism.
Photo: Flavio Forner

Inocêncio Machava, 45, was born in Maija Cassi in the district of Gaza, Mozambique, and has lived in Maputo since 1986. Although he only studied until grade 9 of secondary school due to a combination of factors such as the country’s 16-year civil war (from 1977 to 1992), poverty and the discrimination he has faced because of his condition, Inocêncio has always wanted to work in the area of environmental justice or social care. But he has been unemployed for the last three years. “I really want to work and find a job but there is too much prejudice in society,” he tells Equal Times.

Inocêncio feels more comfortable walking on the streets when the sun has gone down. This photo was taken in Maputo on 13 June 2018 during the celebration of the International Albinism Awareness Day, adopted by the UN General Assembly in 2014.
Photo: Flavio Forner

Inocêncio says he experienced a lot of prejudice growing up. As the only person with albinism in his family, his relatives and friends ostracised him, and his condition was the excuse Inocêncio’s father gave to leave his family. At school, Inocêncio’s classmates used to spit on him. “People think that an albino is not a person. We are discriminated against. People think we have no worth,” says the husband and father-of-two. This prejudice has followed him as adult. He says that his light skin and extreme sensitivity to the sun makes it very difficult for him to find work. “People think that you are not useful and that you cannot work, just because you have albinism. I have had several job interviews, but I am never offered any posts.” Inocêncio currently works as a volunteer for Albimoz, a local association for people with albinism. But his dream is to finish school and work as an environmental defender.

“Being an albino is no different than any other human being. We have dreams. We want to study and carry on with our lives,” says Aly Faque, a 51-year-old singer who is one of Mozambique’s most revered musicians, as well as being a prominent voice against the discrimination that people with albinism face in his country. Faque is originally from the northern town of Angoche, in the province of Nampula, which neighbours Tanzania and Malawi and has the highest rate of people living with albinism in Mozambique.

In music, Aly Faque has found a way to make a living and share his talent with the world. He was recently named the director of arts for the province of Nampula and says that he will try to foster cultural activities in the region while giving a platform to new local talent.
Photo: Flavio Forner

As a baby, Faque was taken away from his mother and abandoned by the father on the streets. He was later rescued by his grandfather who raised him. It is through art and music that he speaks out against prejudice and spreads a message of respect and tolerance. One of his most famous songs is called Kinachukuru which means ‘I am grateful’ in Makhuwa, one of the main languages of northern Mozambique. In the song, Aly laments his father’s rejection and the poverty he endured as a child. “This song reveals my childhood and the story of my family.”

Aly Faque’s visual impairment does not stop him from playing the piano and the guitar, as well as composing his own songs in Koti, Makhuwa, Portuguese and Swahili. Faque has been making music since the late 1980s when he graduated from the Escola de Música de Nampula, and like his hero, the Malian pop star Salif Keita (who also suffers from albinism), Aly Faque’s life and journey serves as an inspiration to his many fans. “I loved to sing on the streets and people used to enjoy listening to my voice. One day I decided to go to music school,” he recalls.

When he first arrived in Maputo in 1995, 2,000 kilometres away from his home town, life was not easy for Faque. To make a living, he had to do everything from roasting peanuts on the streets and to selling tobacco, all of which exposed him to the sun that causes him such pain. But the boy from Nampula never gave up his dream of becoming a musician. Word of his talent eventually made it to Radio Mozambique, where he was able to record some of his original songs.

Aly Faque is pictured here with his youngest daughter, Felicidade (meaning ‘happiness’ in Portuguese). His daughters are shy but express lots of love for their father and enjoy being around him when he plays his guitar.
Photo: Flavio Forner

As well as finding joy in music, Aly Faque says he is blessed with a happy family life. “My wife is a lovely person, she respects me and understands me.” But he knows that everyone is not so lucky. He has known several people with albinism who have been forced to lead isolated lives for fear of being discriminated against or even hurt. “There are still so many myths. People have beliefs and think that an albino has to be killed. They are superficial beliefs that people nurture. There are so many albinos hiding in remote areas who do not receive any support,” he explains.

Faque says he teaches his daughters Fatima (12) and Felicidade (4) to be respectful and helpful to people with albinism. “My youngest daughter asks me why I look like this and I explain to her that she does not need to be afraid when she sees people like me on the streets.” Faque is also a major advocate for the government to address the needs of people with albinism. Although Mozambique has a national plan designed in 2015, the country still lacks the relevant demographic information and funding to implement the strategies outlined in the plan. “We need strong policies to support people with albinism and to educate society about our condition,” he urges.