Stigma of Albinism Coming to Light
By Kathi Wolfe
I didnt 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 Georges 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, Ive 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
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 suns 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 groups 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
There is a negative part of human nature
that doesnt deal well with human differences, McGowan said.
Theres 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 youre Asian or African, youre 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
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)
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 dont die -- they just
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, theres been some
improvement for people with albinism in Tanzania, Sawatzky said.
Isolation among people with albinism in Tanzania is growing less.
Theres a Tanzania albinism society with chapters in every region of the
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 Mariamus DuBois and her
husband have two children with albinism. My kids are lucky, said
DuBois, whose family lives in Arlington, Va. Theyre successful.
Theyre into sports and the marching band.
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
wasnt injured. After weeks of hospitalization, the woman recovered from
the loss of her arms.
After the 20/20" report of the
womans story aired, volunteers worked to bring her to the United States
to receive prosthetic arms, DuBois said. We werent looking to start
a nonprofit, but we couldnt just put her back on the plane!
Many people with albinism die before age
30 because they have skin cancer, DuBois said. They dont have
access to sunscreen or know what it does. They dont know that they should
wear long sleeves or hats when in the sun. They dont understand how to
apply sunscreen. Once, a woman who was given sunscreen applied it as a lotion
on her babys back at night rather than during the day.
The foundation works to help people
understand that albinism isnt a curse, punishment or contagious and to
teach people with the condition how to protect themselves in the sun.
the documentary In the Shadow of the Sun over a period of six
years. The filmmaker, whos based in the United Kingdom, had an aunt with
albinism, but he didnt 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.
The 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
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