In the documentary The Boy from Geita, 13-year-old Adam Robert explains what he hopes to do when he grows up.
"I used to draw," he says. "I had a dream I would one day become a great portrait artist."
Then one day, a man maimed Robert's left hand and hacked off three of his right fingers.
The attack wasn't random. Robert has albinism. His skin is chalk white. In countries around the African Great Lakes region, including Robert's home country of Tanzania, some witch doctors believe that the body parts of people with albinism have magic power.
The film itself has turned out to be a bit controversial. Subjects in the documentary accused Tanzania's legislature of being complicit in the trade of body parts — one of several points that raised the hackles of Tuvalo Manongi, Tanzania's permanent representative to the United Nations.
At The Boy From Geita's premiere at the United Nations this fall, Manongi said to the audience, "I have not seen the documentary you are about to view. However, based on the trailer, the director's statement and briefing from some who have watched it, the documentary exaggerates, generalizes and fabricates several aspects [of albinism in Tanzania.]"
After a BBC investigation in 2008 revealed Tanzanian witch doctors were buying and selling albino body parts, there's been increasing surveillance of the assaults on people with albinism. That spurred Canadian documentary filmmaker Vic Sarin to follow Robert as he recovered from his attack in October 2011, outside his home near Geita.
The attack, covered by the Tanzanian news media, caught the attention of Peter Ash, a Canadian business owner who runs Under the Same Sun, a nonprofit group that has served people with albinism in Tanzania since 2009. Ash, an albino himself, took Robert under his wing and provided safe housing, schooling and reconstructive surgery for his hand.
As the documentary follows Robert's recovery, the film weaves in the personal stories of Ash and other people in Under the Same Sun's care. "Now it is so dangerous that I'm scared to go to the nearest bush to look for firewood — unless someone comes with me," one woman says.
Manongi does not agree. He asserts that portraying albinos living with daily fear is an unbalanced view. "If you live in far remote areas, then there is a risk," he says. "But to suggest that people in Tanzania everywhere live [in fear every day] is farfetched and disappointing. The misconception that as a person with albinism you don't stand a chance once you land in Dar es Salaam is insulting."
There's also a disagreement about the meaning of the term "zeruzeru," a Kiswahili term for albinos. Ash says the term carries the connotation of a worthless, ghostlike creature. Manongi says that's a lie. It's just a word, he says, and all it means is albino.
On counts like these, Ash says Manongi isn't qualified to pass judgment. "He probably doesn't hang around people with albinism for 12 hours a day and weeks on end in [Tanzania] like I do," Ash says.
At The Boy From Geita's premiere, I met Kulwa Mkola, a young woman with albinism currently in Under The Same Sun's care. Four years ago, when she was 15 years old, a group of men entered her home after midnight, severed her right arm and ran off with it.
Under the Same Sun and the Global Medical Relief Fund, an American charity that provides prosthetic limbs, paid for her travel to the United States and medical treatment. I went to see her at the Global Medical Relief Fund's residence in Staten Island, where she's waiting to get an artificial arm.
Mkola has a soft voice and sits with her one arm wrapped around her chest. She doesn't speak English, but she hears the word "zeruzeru" when I ask what it means to her. She tenses when I say it, even before our interpreter begins translating. "In my village, they called me 'birimiru,' which means a white goat," she says. The word zeruzeru is like that, she says. It's like they don't see people with albinism as human. "It feels terrible. I have a name, so why do they call me zeruzeru or birimiru? Why wouldn't they just call me by my name?"
Mkola was not in The Boy from Geita, but like many of the people with albinism in the movie, she feels that the Tanzanian government has done little to help them. "The government isn't doing much to stand for the rights of persons with albinism," she says.
Director Vic Sarin echoed the sentiment. The film, he hopes, will spur Tanzania's government to take greater action to protect people with albinism. "My intention was to take this issue and bring it beyond the shores of Africa, so the pressure builds up on these countries internally and externally," he says. "I think [the problem] is the mindset in the people – that [albinos] are really ghosts and not really people. That's still there, especially in people with no education in little villages where they still practice much witchcraft."
Again, Manongi has another point of view: "Implying that we are so uneducated, we need interventions from abroad, there's nothing more colonial than that. I'm reminded of the 'White Man's Burden,' this attitude that only foreigners can enlighten people engulfed in ignorance and helplessness. We are far better than that."
And Manongi says the government has been working to help people with albinism for years, a point he feels the film neglected. Municipal councils have a mandate to discuss how to provide better security and health care for these people. "This is at times a resource issue," he says. "I will say we need partnerships in order to assist and end this tragedy."
The film implicates Tanzanian politicians as being part of a conspiracy protecting the trade of albino body parts. Members of Under the Same Sun say in the film that politicians purchase albino body parts to bring good luck for an election. "We know that politicians in particular buy the body parts because it's well documented in Tanzania and Africa, the U.N. has confirmed this, there has been an upsurge in the number of attacks and killings in the run-up to elections," Ash says.
Ikponwosa Ero, the U.N. independent expert on albinism and also an official for Under the Same Sun, said in a statement in October that attacks on people with albinism in Africa increase during election campaigns.
Manongi says that statistics from the Tanzanian Ministry of Home Affairs show that killings go down, not up, during elections. But he does note that the problems facing people with albinism in Tanzania are real, and he's thankful Peter Ash's organization helped the boy from Geita get medical treatment. "Adam's experience is one that no human should have to endure. And we need greater awareness and the necessary alliances to help these victims. I also see that better side of [the film]," he says.
Copyright 2020 NPR. To see more, visit https://www.npr.org. 9(MDA4MzM1MjM1MDEzMTg5NTk0MzNmOTQ5MA004))