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Anglicans helping families accept children with albinism in Tanzania

Posted on: June 12, 2015 10:54 AM
Martha Mganga and her husband Edmund Mganga working to end stigma against people with albinism in Tanzania through the video “Watu Kama Sisi” (“People like us”).
Photo Credit: Albino Peacemakers and Mennonite Central Committee
Related Categories: children, human rights, iafn, Tanzania, UN

By Ilona Sabera for ACNS

“Peace starts at home. Albino children need to be accepted by their family first, then the village and finally the government,” says Anglican Martha Mganga, director and founder of Albino Peacemakers, a non profit organisation based in Arusha, Tanzania. Martha has been educating families about albinism and rescuing people in danger for almost 30 years.

The first United Nations designated International Albinism Awareness day on 13 June is expected to bring over 20,000 people to Arusha. Albinism is a genetically inherited condition where the pigment that normally gives colour to skin, eyes and hair is absent. Tanzania has one of the highest rates of albinism in the world with one in 1,400 people having the condition and a total estimate of 33,000 people.

Rescuing children with albinism in Tanzania

Tanzania is also one of the countries where people with albinism are being persecuted and killed since witchdoctors claim their body parts bring luck and prosperity. A total of 156 attacks against people with albinism, including grave robberies, have been documented since 2009, of which 75 resulted in death, according to a report by the non-governmental organisation Under the Same Sun.

Martha travels from village to village in response to people’s calls for help. A return journey may take several days. On one occasion, after riding a motorbike for 150km to a village of the Maasai tribe, known for a high number of attacks against people with albinism and killings of albino infants, she found a mother taking care of her five-year-old son, Musa, who lives with albinism and who had been injured by his father. Martha had to take the boy to the police and to the hospital by motorbike. However, when the police issued an arrest warrant for the father, local village leaders were reluctant to implement it. “They told me ‘We will be discussing Musa, but he could already be dead’, recounts Martha. “They said, ‘You have to take him to your home’. And they gave Musa to me for good.”

Musa is not the only child with albinism taken care of by Martha and her husband Edmund Mganga if it proves impossible to help families to accept and protect their children with albinism. She continues: “Two weeks ago I found a seven-year-old John, 20 km from Arusha. He did not know how to shake hands and was dirty. His parents were not caring for him. We took him to our home and to school. No one asks for him.”

There are times when more than ten children are staying in the Mgangas’ home. Some of them later go to boarding schools, others are returned to their families. As there are no state boarding schools nearby, Martha has to send children to private ones, but neither she nor the children’s families can always afford the fees. Girls with albinism may face a double threat. Martha recently rescued a 12-year-old Maasai girl with albinism who was being forced into marriage.

Health, education and work opportunities

“Being albino is a curse from God”; “albinos do not die, they disappear”; “when you touch an albino, you become one.” These are some of the false beliefs popular in many rural parts of Tanzania. Adults and children with albinism face discrimination and stigma in families, schools and village communities.

Martha herself, who was the first child with albinism born to her parents, suffered from abuse in her family. “My father thought my mom got pregnant with a white man. He used to beat her. People said our family is cursed”, she says. Martha had to face discrimination in school as well: “Teachers refused to teach me and other children were afraid of me.” Now she explains people that both parents must carry an albinism gene to have a child with albinism.

Despite difficulties, Martha went to an Anglican college in Nairobi and on her return was employed by the Diocese of Mount Kilimanjaro. After overcoming personal challenges, Martha wanted to help other families: “I had to go and visit all the houses and tell them they are part of God’s creation, and not there by accident. I found some very sick albino children, with wounds caused by the sun. I took them to hospital and looked for safer schools for them.”

People with albinism need constant protection from the direct sun. Albino Peacemakers informs families of health conditions associated with albinism and when possible provide hats, sunglasses and sunscreens gathered from donations. Many people with albinism in Tanzania die of skin cancer before reaching the age of 30, which could be prevented by properly covering their bodies.

When a child with albinism fails exams, “parents feel their time is wasted”, explains Martha. People with albinism have poor vision so they cannot see small print on exam papers. Children with albinism have the same intellectual capacity as other children and Martha points out that teachers need to be informed of their particular needs. There is no state support for this in Tanzania.

The Albino Peacemakers’ director is convinced; “These people can achieve if they are given an opportunity.” Martha is proud that a student with albinism from the University of Dodoma Educational College will soon go for a year-long exchange programme to work as assistant teacher in the USA with the support of Mennonite Central Committee.

People with albinism struggle to find work. Albino Peacemakers has started a sewing cooperative for women with albinism and mothers of children with albinism so they can earn and work indoors. Marta says when people see clothes made by a person with albinism they are surprised. She has more business ideas: “It is my plan to sit with young boys and think about what they can do. They need to start small projects, like keeping chickens or a goat and sell what they produce.”

People like us

Watu Kama Sisi ("People Like Us") is a documentary video produced by Albino Peacemakers with the support of the Mennonite Central Committee. It breaks misconceptions about people with albinism showing educated, happily married and working people with albinism who share their personal stories. Traditional healers are also shown in the video condemning witchdoctors and killings. During her travels to Tanzanian villages, Martha shows the video and does not shy away from answering any personal question in order to spread awareness.

A friend suggested to Sada Kaema, a woman with albinism, that she sell a finger to end her poverty. “God created me this way for a reason. I just cannot chop any of my body parts to enrich myself. I don’t mind struggling. I am sure one day God will bless me with richness,” she speaks with confidence in the Watu Kama Sisi video.

Alongside a number of state and nongovernmental organisations, Albino Peacemakers will take part in the event in Arusha to celebrate the first International Albinism Awareness day on 13 June. It will provide an opportunity for students with albinism to show their talents, sing and perform and break misconceptions.

The International Anglican Family Network (IAFN) is a forum for the exchange of information about the challenges facing families in different countries and cultures and the practical work being undertaken by churches and individual Christians. To learn more, like the IAFN Facebook page or subscribe to IAFN News

Ilona Sabera is Communications and Research Officer at the Anglican Communion Office.