Why Africa's albino are hunted for their body parts
In rural parts of Tanzania, it’s believed albinos don’t die, they disappear.
Witchdoctors have been spreading the belief that albino limbs will make you rich, leading to the poaching of innocent children and adults with the skin condition in Tanzania.
“Many of the stories are the same,” said British filmmaker turned human rights campaigner Harry Freeland.
“These myths, these legends that people with albinism can float on water or see in the dark.”
Harry has spent the last 10 years of his life giving albinos in Africa a voice. He first became aware of the stigmas surrounding the condition in 2004.
“I was making a film in Senegal and a mother approached me with her six month old child,” he said. “She held it out to me and asked me to take it back to where it comes from, assuming because I
was white that it belonged to me in some way. She had been thrown out of her house and accused of sleeping with a white man.
“I suddenly realized that being born white, being born with albinism in Africa could lead to such severe discrimination.”
Harry wondered if a fight for the rights of albinos could be won with his camera. He decided to make a film to raise awareness of the issue and give these people a voice.
“What I quickly discovered when we started rolling was that no one had ever asked them how they felt,” he said.
Harry would spend the next six years shooting his award-winning documentary In the Shadow of the Sun, during which time myth turned to murder.
“The first murder was reported in 2006,” he said. “It was a 34-year-old woman called Arif. She was the first person to be killed in Tanzania.
"We believe the witchdoctors have been spreading the belief that albino limbs will make you rich. So obviously people with albinism don’t just disappear when they die. The reality is they’re being killed.”
Since then there have been 185 reported killings of people with albinism and 297 attacks.
“As the murders escalated the government [in Tanzania] slightly panicked and started putting young children into these special protectorate centres to obviously protect them against the murders that were taking place,” said Harry.
The extraordinary response to Harry’s film inspired him to start Standing Voice, a frontline organisation founded to advance the human rights of people with albinism in Africa by promoting social change.
Standing Voice designs and delivers health, education, advocacy and community initiatives, reaching thousands of people with albinism across Africa.
“In the Shadow of the Sun is a film about being different and I think we found that loads of people could relate to it, because at some point, everyone's felt different in their life,” Harry said. “That’s really become our advocacy tool.”
Standing Voice wants to transform current perceptions of albinism in Africa with the aim of alleviating ostracism. This includes getting children with albinism in Tanzania back into the wider community and out of the government camps.
“It's time for these children to be integrated back into society,”Harry said.
“Some of these camps now have 300 children with albinism. They're surrounded by high walls, guarded by police at night and some of them severely traumatized. And they can't leave."
"They’ve become dumping grounds for parents who maybe want an excuse to not have to care for their child anymore. So we're working really hard with the Tanzanian government to get these children out of these camps and put them into high achieving schools, where they have a chance.
"Given the opportunity, these children can do anything they want.”
Standing Voice also believes in training locals to build local responses to the issue.
“We equip and train Tanzanians to have an impact on this cause,” said Harry. “Our programs are really amazing. We now see 2,000 people with albinism every four months for our skin cancer program."
"We have 800 people enrolled in our vision program. It is amazing what a difference vision devices can make to a child's life. These are kids who couldn’t see the blackboard before."
You can find more information about Standing Voice and how to support their work with people with albinism here: http://www.standingvoice.org/
Putting victims of the attacks back together
Empowering people with albinism has also become a passion for American Elissa Montanti, who started the Global Medical Relief Fund (GMRF) in New York.
The Staten Islander has devoted the past 18 years to aiding seriously injured children from around the world.
Elissa was in her 20s when the deaths of her mother and grandparents within a short span of time had left her stricken with grief. In an effort to overcome the impact of her losses, she reached out to help child victims of Bosnia’s civil war.
She approached the-then United Nations Ambassador from Bosnia with an offer to send school supplies and toys to children there.
When the ambassador responded by reading her a young amputee boy’s letter, Elissa quickly realised there were far more urgent needs of the children in war-torn Bosnia. She immediately began to recruit airlines, hospitals, physicians and prosthetic companies to donate their services.
The writer of the letter, young Kenan Malkic, along with his mother, soon arrived at JFK Airport. Both were welcomed into Elissa’s home. During a four- month stay in the U.S., Kenan received two new arms, a new leg and a new life.
Soon after, Elissa founded the GMRF for children, whose mission is to aid children who are missing or have lost the use of limbs or eyes, have been severely burned, or have been injured due to war, natural disaster or illness.
She has since helped almost 200 kids from 37 countries, and with the required follow-up medical care, this has added up to nearly 1000 visits.
But it was after reading an article in 2015 about five-year-old Baraka Cosmas Lusambo from Tanzania that would change Elissa’s life forever.
As Baraka slept one night, men with knives had burst in and sliced off his right hand.
Elissa reached out to charity Under the Same Sun, a charity committed to ending the discrimination of people with albinism, to see how she could help.
She learned that it wasn’t just Baraka who needed assistance – there were four other Tanzanian kids who were victims of attacks. Elissa didn’t hesitate.
“If we can do it, there’s not a reason on earth why we shouldn’t,” she said.
“I love all the kids I’ve helped, don’t misunderstand me, but these kids are special. The Tanzanian kids, in the 18 years that I’m doing what I’m doing, I have never been so emotionally touched, moved, brought to not to just tears but beyond tears because of these kids, because of the trauma that they had.”
Previously, Elissa had mainly dealt with children who were victims of war or natural disasters. But this was different.
“This, I couldn’t comprehend,” she said. “I could not wrap my head around how another human being can be so deliberate inflicting so much horrendous pain for no reason whatsoever but for crazy beliefs.”
And Elissa found their scars were not just physical.
“I guess it was a matter of trust. Because of the nature of what happened to them and it took them a while to unwind and warm up to you. And when they did, it was just beautiful.
"They knew they were coming here for help."
“It’s more than just a prosthetic, it’s more than just picking up a pencil. It’s a sense of wholeness, it’s dignity. It’s empowering.”
And it wouldn’t have been a trip to New York for these Tanzanian kids without time to play tourist.
“It was the summertime so we had all sorts of fun things to do,” Elissa said.
“BBQs and what not. They ate a lot of hot dogs and hamburgers. But they had so much fun. They were jumping on the trampoline and laughing hysterically going swimming for the first time.”
Before the Tanzanians flew home, they wrote letters to Elissa, thanking her for everything she did for them.
They said it wasn’t something that could be explained in a simple language. Even several months later, their words still bring her to tears.
“This was the hardest goodbye,” she said.
“They gain so much trust in us and really appreciated the difference that we were making for them. But I know that they’re coming back [for follow up treatments] so that made it a little easier.”
For more information about Elissa’s work with the Global Medical Relief Fund for children and how you can help, go to http://www.gmrfchildren.org/
Understanding Albinism
“Albinism is quite rare in the world,” said Dr Murray Brilliant, one of the world experts on the condition.
The geneticist is the director of the Center of Human Genetics at the Marshfield Clinic in Wisconsin. “About 1 in 20,000 people worldwide have albinism. In Tanzania we see about 1 in 2000 people have albinism.
“The mutation is in a gene we call OCA2. It's a bit of that gene is commonly missing in folks with albinism in Tanzania.
"A small change in one gene is literally black or white. We can trace this form of albinism back about 2500 years ago to a common ancestor.”
Dr Brilliant thinks it is crucial for people in Tanzania to be aware of this genetic history.
“Albinism is quite literally the face of their ancestors,” he said. “This is an important part of their heritage. To murder these people is an insult to their culture and their ancestors.”
Special thanks to filmmaker Harry Freeland for granting permission to use footage from his documentary In the Shadow of the Sun.
Footage of Dr Murray Brilliant in Tanzania thanks to My Shocking Story: Albino Crisis.
Some images courtesy of AAP
