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  • Writer's pictureMina Phillips

Albinism in Uganda: the children who live as targets

In 2009 the United Nations released a documentary named Deadly Hunt: Albinos in Tanzania. It brings awareness to the stigmas and societal belief systems which cause those with albinism to have their basic rights challenged in most areas of their lives - and this starts from the day they are born. I recently spoke with the team from SCOSP (Site for Community Services Program), a Ugandan non-government-organisation which offers support and protection to children with albinism. While they say that they are seeing a positive shift in their communities, there is still a long way to go.

Children with albinism in Uganda
Image courtesy of SCOSP

What is albinism?

Albinism is a genetic condition which affects the levels of skin, eye and hair pigments in a person. As a result, those with albinism usually have very pale skin, hair and sometimes eyes. The condition makes those with albinism particularly susceptible to sunburn and skin cancer - hats, sunblock, sunglasses and enough shade are therefore extremely important to their wellbeing. Eyesight problems are also common for those with albinism. Without the appropriate vision support, it can be difficult to receive an education.

Community belief systems

In Uganda, some people believe that those with albinism are either cursed or that their body parts contain magic which can result in wealth. As a result, many people with albinism experience ostracism from a young age and live in fear of being attacked and dismembered.

Abandoned at birth

These belief systems can affect a person with albinism from the day they are born. Such was the case for Treasure, a now three year old girl who was abandoned by her father at birth.

“When I gave birth to an albino child, my husband climbed the house and removed all the roofing and told us to leave his home as he went back to live with his parents”, explains Treasure’s mother, Ronah.

Children with albinism in Uganda
Image courtesy of SCOSP

Risk of kidnapping

As is shown in the United Nations’ documentary, it is not uncommon to come across people with albinism who are missing limbs. In the documentary, a 28 year old woman named Miriam is fed by her mother while her three year old son stands next to her. She was brutally attacked in the night, when she was seven month pregnant, by a group of men who cut off her arms using a machete - likely men who believed or profited from the belief that albino body parts can bring wealth when converted into a potion.

The same horrific acts occur in Uganda, causing those with albinism to fear for their lives, daily. Children are particularly vulnerable, explains one mother of her albino daughter Anne.

“Anne is a very beautiful and caring child. After school, she loves to go to fetch water out for cooking from the spring and washes the dishes. While at the spring, Anne fears that she will be kidnapped one day.”

Ostracised in schools

For many albino children, visual limitations can make school difficult. This is further complicated by local belief systems. While some children with albinism report that they have friends that they can play with, others report being rejected by their peers who discourage others from playing with them also. Moving to and from school can be a terrifying experience in itself, as some children fear being kidnapped. One child, Gilbert, explains that he doesn’t accept lifts to and from school because he fears for his life.

Career limitations

For the children who complete school, the next challenge is being accepted into their chosen career path. Career choices can be limited by the sun, as outdoor work can be extra challenging and dangerous for those with albinism due to sun exposure. Eyesight problems are also a challenge, as one recent graduate, Susan explains. She finds it difficult to find work as a teacher. “Schools reject me”, she explains. “They say, “how can someone who doesn’t see teach our children?”

“The sun here is too hot”, she adds. “I often find it hard to go about my work since I get sunburnt all the time. I also come from a poor family where it has been a struggle to get a good education.”

Children with albinism in Uganda
Image courtesy of SCOSP

What SCOSP is doing to change this

Since its beginnings in 2010, SCOSP has been working with albino children and their families to support them in living a safe life where their human rights are respected. To achieve this, they also put much of their time and resources into trying to change local views surrounding albinism. According to Timothy Ansingwire, who has been working for SCOSP since 2014, there are small changes occurring within the local community.

“They come to us asking rather nice questions like: How many albinos do you have under your care? or How can they be helped to live longer?”

Other areas of SCOSP’s work includes providing children with albinism with educational and vocational support, supporting albino children’s welfare through healthcare support, sunscreen provision, providing glasses for those with limited vision, rescuing and supporting albino children following attacks, supporting families who have children with albinism, and more. However, the organisation has limited resources and cannot provide children and families with all of the support they would like to be able to.

How you can help

“With your donation and sponsorship, you give them tuition, school uniforms, books, meals, clean water, sanitary pads, school supplies, education and so much more!”, tells Timothy. “You further provide them with an opportunity to fulfill all of their dreams. When they grow up, all of them have ambitions and some want to save lives just as you have saved theirs.”

Further ways that you can support the work of SCOSP include:

· Funding awareness programs

· Donating sunscreen lotion and glasses

· Supporting fundraising efforts

· Donate office or field equipment such as cameras, printers, or vehicles

· Support local income generation for self sustainability of SCOSP

· Sponsor a child in school monthly, quarterly or annually

· Build a home for a family with a child with albinism

· Help generate income for albino families

· Write proposals and grants for SCOSP

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