Paschal Merumba has suffered prejudice from the day he was born.
His mother refused to breastfeed her “cursed” baby, the second child in the family born with albinism; the first had already died of neglect. Merumba was thought to have contaminated the community. He was made to eat apart and sleep on the floor.
In 2013, Merumba was attacked by men who tried to kill him. “I was out one evening looking for something to eat when I was ambushed by a group of men,” he recalls. “They tied my arms and legs, hooked a rope round my neck, and began pulling me into the bush. They wanted to cut my head off to perform witchcraft.”
He was saved when a neighbour ran screaming towards the group with a torch.
The health implications of albinism – visual impairment and the risk of skin cancer – are well known. For some, though, social stigma is the biggest danger.
“My life was spent in darkness,” says Merumba. “At my lowest point, I drank battery fluid in an effort to end my own life. When it failed, I said to myself: maybe it’s not God’s wish that I leave this world. Not yet.”
Now 54, his life changed after a meeting with Alex Magaga, who had worked on a BBC documentary, In the Shadow of the Sun, which tells the story of two Tanzanians with albinism. Its success led director Harry Freeland to set up Standing Voice, an organisation based on Ukerewe, an island in Lake Victoria, that defends the rights of people with albinism. Magaga is now its operations manager and Merumba the site gardener.
In parts of Tanzania, up to one in 1,400 people has albinism; the nationwide frequency is closer to one in 2,500. Either way, the figure is significantly higher than in Europe and North America, where roughly one in 20,000 people has the condition. Many die of skin cancer before the age of 40, often after facing oppression based on superstitious beliefs.
“Ukerewe Island was home to a deeply impoverished community marked by segregation and violence: siblings forced to eat from separate plates in the belief their albinism was contagious, women raped because of the myth their albinism cured Aids, and those who died of skin cancer but were denied burial because they were ‘ghosts’ whose bodies would disappear,” says Sam Clarke, Standing Voice’s communications manager.
The myths and misperceptions surrounding albinism in Tanzania are “almost too numerous to count”, says Clarke. Some believe the body parts of people with albinism bestow good fortune. This, says Clarke, has propelled 206 murders and hundreds of attacks across 28 African countries since 2006. In Tanzania, 75 albinos were killed between 2000 and 2016, according to the UN.
The violence, says Clarke, makes for dramatic headlines but fails to tell the full story. “Murders and attacks are really the tip of the iceberg, the most extreme manifestation of a much deeper, much more structural process that damages the welfare of people with albinism across all areas of life.”
A cycle of marginalisation and exclusion can impact several generations, says Clarke. “In Tanzania, the dehumanisation of people with albinism means that services aren’t built to meet their needs: discrimination impedes their access to healthcare, restricts opportunities for education and employment, and isolates people with albinism from their families and communities.”
Today, Standing Voice – which has been active for five years and supports members of the Ukerewe Albinism Society – aims to reconnect a divided community.
“Every day we see how social integration improves health and education, creates jobs, and builds stronger civil support networks to protect people with albinism from future persecution,” says Freeland.
One practical step towards this was the establishment, in 2016, of the Umoja training centre on Ukerewe. Umoja, which means unity in Swahili, offers skills development and economic opportunities to people with albinism and the wider island community; a second chance, in effect, for people who have missed out on an education.
Last year, Alex Booker, a UK-based printmaker, led woodblock printing. This year, he returned with graphic artist Camille Walala and designer and fabricator Simon Sawyer.
The workshops offer a place for the island’s residents to try new things, working alongside one another regardless of the colour of their skin. For those with albinism, it is a chance to build confidence and stronger links with others in the community. Some learn skills that could provide a living.
Previous sessions have resulted in ongoing groups for printers, tailors, photographers, performers, young radio reporters and an arts and crafts club.
Alongside the classes, Walala, whose dramatic pop designs have earned her the name “queen of colour”, helped to restore the centre.
The plan was to add some colour to the buildings, including the water towers, the new radio production lab and the community library. “I wanted people there to feel pride in the centre and the designs,” she says.
Walala received many requests to create designs in people’s homes. “They liked the bold graphics with sharp edges, and so we left a lot of tape so that people could practise and create their own designs.”
Josephat Torner, who has albinism and played a prominent role in Freeland’s documentary, took part in the storytelling workshop. “It’s important for us to have this space to understand each other and to share our hopes and ambitions,” he says. “We are here to uplift one another and to develop our talents, to break the silence by speaking back to the world. We are proving to ourselves and each other that we can talk, we can draw, we can learn: we can do whatever we put our minds to in this fight to build an inclusive society.”
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Vedastus Zangule, who took part in the radio workshops, says he was segregated in primary school because of the colour of his skin: “My teacher either didn’t understand my visual impairment, or he didn’t care. In the end, I was driven out. I stayed at home and taught myself about electronics. I occupied myself by making things, and fixing broken appliances: I was an inventor, a creator. For a long time, I was my only teacher.”
Zangule’s aspiration for an education where he would be “respected and included” was fulfilled with support from the project. Now, after being able to complete secondary education, he has a new dream: “I want to go to media school to train to be a TV and radio presenter. I’m a much happier person now.”
Life has been transformed for Merumba, too. He feels things are changing for people with albinism on the island.
“Where I live now is much safer. My neighbours’ attitude and understanding of people with albinism is improving greatly; we sit together, talking and sharing. I love to socialise with others. Now, I can do that; I have people who love me. I feel secure and lead an independent life.”
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