Project 46 is a special project with a new partner called Standing Voice based in the UK. Standing Voice defends the rights of people with albinism in Africa. This incredible and unique organization amplifies the voices of people with albinism, giving them tools to build their own futures.

Albinism is a genetic condition that reduces melanin pigmentation in the skin, eyes and hair. Melanin is really important because it protects your skin from sun damage, so people with albinism have a higher risk of developing skin cancer. They also often have poor eyesight caused by a lack of pigment in the iris, and suffer from Nystagmus (say: na-STAG-mass) which causes their eyes to "shake" or move rapidly.

Without intervention, many people with albinism in Africa die very young from skin cancer and their visual impairment is linked to school failure and poverty. 1 in 3,000 people in Africa have albinism and face significant stigma and are ostracized because of their appearance. 

Many communities believe them to have special powers and sadly they have been targeted for their body parts by those practicing sorcery and witchcraft, so they can use them as ingredients for magical potions. A staggering 772 witchcraft-related crimes have been recorded against people with albinism since 2006. Tanzania and Malawi have reported more cases than the rest of Africa combined.

Our givers will be supporting Standing Voice’s Vision Program to deliver clinical care, education, and training to treat the visual impairment of 400 people with albinism and develop the capacity of their optometrists and teachers in Malawi and Tanzania. We are so proud to be partnering with an impactful organization and look forward to witnessing the empowering work they are doing across Africa.

Project Scope

Country: tanzania

# Served: 400+

Need: $21,720

$22 provides a person with albinism with comprehensive service of eye care and education

MAY & JUNE UPDATE

Mashaka Tuju was born in Mwanza, Tanzania to a family with 8 siblings, with him being the only one with albinism. From the moment he was born, Mashaka experienced mistreatment due to the stigma around his condition.

Because he was the only albino child in the family, his father believed that he was born as a result of an extramarital affair had by his mother, which led to their divorce when Mashaka was just 5 years old. 

His community held lots of superstitions about his condition from women thinking if they came too close to him they would end up with an albino child, that he was strange, held magical powers and could see in the dark. Many relatives would throw needles at him in the dark and tell him to find them and when he couldn’t, they would beat him up. 

In a school of 600, Mashaka was the only child with albinism and was treated differently by students and teachers which affected his performance. Finally, the headmaster intervened to make sure he could see the chalkboard, and thereafter he started to excel in his studies, especially in math, and other students would even ask him for help on the subject. 

Mashaka remained committed to his studies despite the daily 30km walk to and back from secondary school. Every day that walk to school placed him at risk of encountering violence from judgemental peers and sun damage to his fragile skin.

In 2009, Mashaka finished his education, married and went on to qualify as a primary school teacher. He taught at an inclusive school for students with intellectual and hearing impairments along with students with albinism- just like him. Thanks to Standing Voice, he was able to attend university, something he couldn’t afford before, and he is now an Education Support Officer. 

“Teaching is my favorite thing to do. Teaching is where I can share myself to the benefit of my students and colleagues. I can make sure students with disabilities are given priority and receive the attention they need. I want to be a voice for students with disabilities,” said Mashaka.

Photos by Ebrahim Mirmalek.

APRIL UPDATE

Preparations for the clinic are going smoothly, and many assistive devices such as monoculars have already arrived. The team is in the process of coordinating the cutting and preparation of hundreds of lenses for distribution.

In addition, the team has begun printing educational books and banners. We are so excited about what’s to come in the upcoming weeks. 

Paschal’s Story: The Gardener 

Ukerewe Island, Ukerewe, Mwanza Region, Tanzania

Paschal has experienced many hardships due to the fact he was born with albinism. His own mother thought he was cursed and starved him of nourishment. He was rejected by his community, and this stigma did not allow him the opportunity to attend school. 

“My life was spent in darkness,” recounts Paschal describing what life was like before he became involved with Stand Voice Tanzania, “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.”

And Paschal was right. After being attacked in 2013 by a group of men in order to obtain his limbs for witchcraft rituals, Paschal met Alex from Standing Voice, who had heard about his ordeal. Stand Voice provided him with a house in a safe community surrounded by friendly and welcoming people. 

“Where I live now is much safer. I feel secure and lead an independent life. I've never received threats here. I interact with others, ” said Paschal. 

“Before Standing Voice, my health was very poor. I used to be in the sun a lot, so my skin was really burnt. I didn't even have a hat. I was in really bad shape. My eyelids were so burnt I couldn't close my eyes properly for two years.” 

Standing Voice provided  Paschal with eye surgery, so he is able to close his eyes now and has improved vision. His skin is in much better shape too. 

Although Paschal still faces obstacles, the quality of his life has improved dramatically thanks to Stand Voice, whose goal is to defend the human rights of people with albinism in Africa. He is now employed at the Umoja Training Centre created by Standing Voice.  

Picture credit by Imogen Freeland