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Stigma of Albinism Coming to Light

By Kathi Wolfe

I didn’t think much about people with albinism (often referred to as “albinos” or “people who are albino”) until I taught poetry to low-income teenagers who were blind and visually impaired in Prince George’s County, Md.

Some of these teens, both white and African American, had albinism. Many faced teasing, bullying and prejudice not only due to their condition but also because of their race and blindness. Since then, I’ve learned that people with albinism encounter varying degrees of stigma and discrimination in this country. But until I listened early this summer to the “Kojo Nnamdi Show,” a public radio program, I had no idea of the stigma, lack of health care and violence that people with albinism face in other parts of the world – particularly East Africa.

Documentary filmmaker Harry Freeland and Susan DuBois, executive director of the Asante Mariamu Foundation, who were featured on the radio show, along with others working on albinism advocacy, recently communicated by phone and email with Independence Today.

According to the Asante Mariamu Foundation website, Albinism is a genetic condition “caused by recessive genes inherited from both parents. It is rare, and even when both parents carry the recessive gene, there is only a 25 percent chance of any child having albinism.”

In the United States, where one out of 70 persons carries the gene for albinism, the website says, about one in every 17,000 people has albinism. In Africa, according to the site and other albinism experts, approximately one out of every eight people carries the gene for albinism, and one out of every 2,000 people has the condition.

In albinism, the body lacks the ability to make pigment, which results in very pale skin, eyes and hair. People with albinism are visually impaired to varying degrees. Some are legally blind, many are extremely sensitive to light, and others can drive if they use bioptic devices. Because of their lack of pigment, people with the condition are highly susceptible to skin cancer from the damaging rays of the sun. With the use of sunscreen and clothing that protects against the sun’s UVA and UVB rays, people with albinism “can enjoy a normal lifespan,” according to the Asante Mariamu Foundation website.

Though people with albinism are often referred to as “albino,” most of those who have it prefer the term “albinism” because it places the person first and the condition second, said Mike McGowan, executive director of the National Or ganization for Albinism and Hypopigmentation. (The group’s website is www.albinism.org.) Using the word “albino” defines someone by a scientific classification, he said. The term “albino” can be “OK within the albinism community,” said McGowan, who has albinism. “They can own the word.”

There is a negative part of human nature that doesn’t deal well with human differences, McGowan said. “There’s varying degrees in the amount of stigma people with albinism face. A person of Asian or African descent has a much darker pigment. If you have albinism and you’re Asian or African, you’re going to look markedly different. Kids with albinism can be teased or shunned. In extreme cases, the lineage of the children may be questioned.”

Albinism is more common in East Africa because the rural tribes there have a more isolated gene pool and because “the society there is less mobile,” according to the Asante Mariamu website.

Around the world, different cultures view people with albinism in varied ways, McGowan said. “In the Pacific Rim, albinism is revered,” he said. “Native American culture reveres people with albinism.”

But in Tanzania and other parts of Africa, people with albinism are often shunned, said albinism advocates interviewed for this article. They face not only health issues (such as lack of sunscreen to protect against solar rays and lack of medical services to treat skin cancer) but violence.

“In African folklore, there has been for a long time a belief that the body parts of people with albinism are magical -- that they bring good luck,” said Don Sawatzky, director of operations for Under the Same Sun (UTSS), a Canadian nonprofit. “Some in Africa still believe that people with albinism don’t die -- they just disappear.”

These beliefs have led to the mutilation and murder of people with albinism in Tanzania and other parts of Africa, Sawatzky said. “Witch doctors have promoted the idea that the body parts -- the skin or hair -- of people with albinism can be used for good luck. Wealthy people will pay for these parts.”

UTSS CEO Peter Ash, who has albinism, founded the organization after he heard a BBC report documenting the murders of people with albinism in Tanzania, Sawatzky said. Reporter Vicki Ntetema, in an undercover investigation in Tanzania, “posed as a businesswomen wanting to purchase body parts of people with albinism,” he said.

UTSS, an accredited United Nations non-governmental organization, has worked for human rights and awareness of people with albinism. Though much more needs to be done, there’s been some improvement for people with albinism in Tanzania, Sawatzky said. “Isolation among people with albinism in Tanzania is growing less. There’s a Tanzania albinism society with chapters in every region of the country.”

With the help of UTSS’ advocacy, in 2013 the U.N. Human Rights Council adopted a resolution calling for “the prevention of attacks and discrimination against people with albinism.” June 13 of this year was the first International Albinism Awareness Day, a designation created by a U.N. General Assembly resolution adopted in 2014.

Asante Mariamu’s DuBois and her husband have two children with albinism. “My kids are lucky,” said DuBois, whose family lives in Arlington, Va. “They’re successful. They’re into sports and the marching band.”

Susan DuBois and members of the Mariamu Foundation/Google She and her husband founded the foundation after watching a segment on the ABC News program “20/20,” DuBois said. The report told the story of Mariamu Staford, a woman with albinism from a small village in the Lake District in Tanzania. In 2008, two men cut off her arms while she was sleeping with her 2-year-old son. The attackers wanted to make money from selling the limbs of a person with albinism. Her son wasn’t injured. After weeks of hospitalization, the woman recovered from the loss of her arms.

After the “20/20" report of the woman’s story aired, volunteers worked to bring her to the United States to receive prosthetic arms, DuBois said. “We weren’t looking to start a nonprofit, but we couldn’t just put her back on the plane!”

Many people with albinism die before age 30 because they have skin cancer, DuBois said. “They don’t have access to sunscreen or know what it does. They don’t know that they should wear long sleeves or hats when in the sun. They don’t understand how to apply sunscreen. Once, a woman who was given sunscreen applied it as a lotion on her baby’s back at night rather than during the day.”

The foundation works to help people understand that albinism isn’t a curse, punishment or contagious and to teach people with the condition how to protect themselves in the sun.

“In the Shadow of the Sun” poster/Google ImagesFreeland made the documentary “In the Shadow of the Sun” over a period of six years. The filmmaker, who’s based in the United Kingdom, had an aunt with albinism, but he didn’t become aware of the discrimination faced by people with the condition in Africa until he was producing a film in Senegal in 2004, Freeland said in an email.

“I was approached by a Senegalese mother; she held out a child towards me and asked me to ‘take this child back to where it belongs,’” he said. “The woman had been left by her husband because she had given birth to a white child. She thought because her child had white skin it must belong to me. The child had albinism.”

Freeland, on his return to the U.K., realized how little people knew about albinism and how few non-governmental organizations were helping people with the condition.

“After a similar experience whilst shooting a film in Sierra Leone, I realized this was a widespread problem across the continent,” he said. “The murders were never my primary motive for making this film.”

“In the Shadow of the Sun” focuses on two people with albinism in Tanzania as they follow their dreams in the face of severe discrimination and an escalation in witchcraft-fueled murder, Freeland said.

One story was of Vedastus, a 14-year-old boy with albinism. “He spoke clearly and emotionally about his life, from the tightness of his skin to the verbal and physical abuse he received day after day,” Freeland said. “He had an inner strength, an underlying innocence and childlike openness.”

Josephat Torner and Harry Freeland/Google ImagesThe other subject of the documentary was Josephat, a man with albinism who had organized a protest in 2007. “I think he saw me as a way to get his message out there,” Freeland said. “I was searching for a positive character, and I knew instantly that he was the one to tell the story through.”

Since its release in 2012, “In the Shadow of the Sun” has been screened on television, in cinemas and in film festivals in more than 60 countries. It has received many international awards, including one in 2013 for best feature documentary at the One World Media Awards.

“After the first BBC television broadcast, Josephat and I received hundreds of emails from people wanting to know how they could help,” Freeland said.

The incredible global reaction to the film led him to establish the charity Standing Voice www.standingvoice.org , Freeland said.


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