FIGHTING THE STIGMA
B. C. activists, doctors help African albinos who’ve been brutally attacked.
In late 2012, Vancouver plastic surgeon Dr. Mark Hill gave a Tanzanian boy with little hope in life the chance at an education by replacing his thumb with one of his toes. He is now able to hold a pen.
The boy, who has albinism, was 12 years old when hit men paid by a witch doctor chopped off his right thumb, two of his fingers and badly injured his opposite arm. They were after his body parts, worth thousands on the black market due to a deeprooted belief that they are endowed with magical powers. His parents were complicit in the attack.
This fall, Hill and a medical team from the University of B. C. will travel to East Africa, donating their time and expertise to help victims of similar attacks.
Pursued for their body parts
Albinism is a genetic condition that results in a lack of pigmentation in the hair, skin and eyes, causing an extreme sensitivity to the sun and bright light. Discrimination against people who have the condition in Africa is widespread, takes many forms and dates back hundreds of years. Many people believe the body parts of a person with albinism possess magical powers capable of bringing great wealth when used in potions procured by witch doctors.
But it is only in the last few decades, with the advent of market economies, that witch doctors have been able to capitalize on the stigma to turn a quick profit, says Surrey businessman Peter Ash, who founded the charity Under the Same Sun in 2009 to improve the lives of people with albinism in Africa.
Ash, who has albinism himself and says he was beaten up as a teenager because he looked different, felt he had to do something after he learned of the attacks several years ago while watching an undercover BBC report.
Under the Same Sun has documented 128 killings and 174 attacks on people with albinism in Africa since 2009. The true number is likely much higher. Tanzania alone accounts for 139 of those reports.
The trade in albino body parts is lucrative. An arm will fetch about $ 3,000 US; an entire body is worth about $ 100,000, Ash says. Witch doctors procure them for rich politicians or businesspeople and hire hit men to carry out the attacks. It is not uncommon for the hit men to then pay parents to leave their child unattended or identify a time and place when they will be vulnerable.
“The kids are deeply rejected and stigmatized by their parents,” Ash says. “In many cases, the mothers are abandoned by the fathers when the child is born because the father blames the mother for bringing the child into the world, even though genetically both parents have to carry the gene for albinism to produce a child with albinism. They don’t know that. So the mother gets blamed and there’s this idea that there’s a curse in the village.”
The situation can be compared to someone offering a Canadian tens of thousands to kill their rabid dog, Ash explains.
“It’s going to harm somebody. It’s not something I want in my life. Yes, it’s my dog, but it’s rabid and I’ve got a chance to make $ 100,000 here,” he says, noting that the average income in Tanzania is $ 800 a year.
One boy’s journey
It was Adam Robert, the Tanzanian boy who had his fingers cut off, who brought Ash and Hill together.
When Ash met Robert in northern Tanzania, he was moved by the boy’s plight and asked what he could do to help.
Robert had two requests. He did not want to go home, because his parents had been party to the attack. And, he wanted to go to school, but because of his missing fingers, found it impossible to hold a pen.
When Ash returned to Vancouver, he got in touch with the hand surgeon who had operated on his wife several years before. That surgeon suggested Robert might be a candidate for a toetothumb implant and that Mark Hill was the surgeon to do it.
“In the world of hand surgery, it’s like a triple bypass,” Ash says. “It’s the most complex hand surgery you could ever do.”
Ash had Robert’s medical records sent from Tanzania and showed Hill photographs of the wounds. Hill was convinced he could help.
Ash arranged for Robert and a translator to travel to Vancouver for the procedure. Hill assembled a team of surgeons, anesthesiologists and nurses, all willing to donate their time. Vancouver General Hospital donated the operating room, medications and equipment. It took almost 14 hours and when it was over, Robert could once again write his own name.
Local doctors help out
Each year, Hill visits Uganda as part of a UBC medical team to treat burn victims, who often injure themselves around outdoor cooking fires. Last year, having been moved by Robert’s plight, he made a side trip to neighbouring Tanzania. There, he examined victims of both machete attacks and skin cancer, a condition to which people with albinism are particularly prone, especially when parents leave children out in the sun in an attempt to darken them.
Hill says he was horrified by what he saw.
“It’s so hard to believe that that actually happens on Earth; parents sell their kids to get chopped up,” he says.
He recalls being struck by the way children with albinism carried themselves, keeping their heads down and avoiding eye contact “like a dog that’s been beaten.”
He was not able to operate at the time because medical facilities in Tanzania are not set up for it. When the UBC team returns this fall, they will arrange to do the surgeries in Uganda, where such facilities exist.
The team will consist of four surgeons, as well as residents and hand therapists, who will donate their time. They will also bring surgical supplies, including sutures and anesthetic. In the two weeks the team is there, they hope to do between 40 and 50 operations, Hill says. Of those, one or two will be attack victims, some will be cooking- fire related and others have to do with congenital deformities and non- healing motorcycle injuries.
Hill’s long- term goal is to set up a training program for plastic surgeons in Uganda, where there are just five to serve a population of 36 million, roughly the size of Canada. Tanzania, with a population of about 50 million, has even fewer, he says.
Fighting the stigma
But while Hill and his team can help heal the physical wounds, they are powerless to address the root of the problem: the stigma that relegates people with albinism to sub- human status.
Under the Same Sun is working to change that. The charity provides funds for children and youth with albinism to attend private schools and university in Tanzania, and is directly supporting 320 students, Ash says. Some of the graduates have gone on to prestigious careers as government economists, journalists or teachers. Given time, Ash hopes future graduates who live and work in all walks of life will change the way society thinks about people with albinism.
Albinism is 10 times more common in Tanzania than Canada, but the stigma surrounding the condition is by no means confined to Africa, Ash says. People with albinism are typically portrayed in popular culture as disturbed killers with white hair and pink eyes, he says, citing films such as The Da Vinci Code and The Matrix Reloaded.
“Every single movie in the last 30 years that Hollywood has released that depicts a character with albinism, the character always is evil,” he says. “You can’t really separate that from what goes on in Africa. There’s a global stigma in every culture that people with albinism present themselves, because we exist in every ethnicity.”