Melissa Stanford is 14 years old and dreams of becoming a
lawyer. The sixth-grade student lives at a residential school run by the Our
Lady of Kilimanjaro Sisters in northern Tanzania, where she is at the top of
her class and helps the sisters take care of the younger students, some of whom
have physical disabilities. She is quiet and polite with strangers and
compassionate with the younger children.
But Melissa does not look like most Tanzanians. She was born
with albinism, a genetic mutation that means the body is unable to produce
pigment or melanin in the skin, hair or eyes. For unknown reasons, the
condition is 20 times more prevalent in her region of Tanzania than in North
America and Europe. And due to a lack of education, it is shrouded in mystery
and superstition in Tanzania and surrounding countries, leaving people with albinism
particularly vulnerable to attacks.
Local traditions in some parts of Africa hold that body
parts of people with albinism have magical properties that can make people
rich. Witch doctors, who use the body parts in potions, have created a gruesome
trade in which albino limbs can fetch thousands on the black market. Since
2006, 164 people have been murdered and 264 maimed, according to Under the Same
Sun, an advocacy organization for people with albinism based in Canada and
Tanzania that tracks these cases. Many more attacks go unreported.
“There have been beliefs since our grandfathers’ time that
people with albinism are ghosts, that people with albinism are not human
beings,” said Perpetua “Perry” Senkoro, a lawyer who has albinism and works at
Under the Same Sun in Tanzania. “(They think) people with albinism do not die,
they disappear. If I chop off their hand or their leg and bring it to a witch
doctor and he does that voodoo stuff, I can get rich.”
Melissa understands the horror personally. In 2008, when she
was 7 years old, two men broke into her family’s house to attack her sister,
Mariamu, who was 28 and also has albinism. They used a machete to chop off both
of her arms. It took Mariamu seven hours to get medical attention, but she
survived. Since then, both sisters have received protection and care through
the Our Lady sisters and Under the Same Sun.
Activists and widespread media attention have shed light on
the practice in a mission to change superstitious notions about people with
albinism. A documentary called “The Boy From Geita,” about Adam, a young boy
with albinism who survived a vicious attack at his home in the same district as
Melissa, was recently nominated for five awards, including the 2015 Director’s
Guild of Canada award for best documentary. The film also follows Mariamu
Stanford’s story.
In North America and
Europe, about 1 in every 20,000 people have some form of albinism. In Tanzania,
about 1 in 1,400 people have the condition. Experts are not certain why the
incidence is so much higher in Tanzania, especially in the northwestern part of
the country near Lake Victoria, where Melissa is from and where the likelihood
of albinism is 1 in 1,000.
Threat of witchcraft
People with albinism have pale white skin that burns easily
in the sun. In addition to the threat of attacks, they often struggle with
physical challenges such as low vision and skin cancer. In Tanzania, 90 percent
of those with the condition contract skin cancer by the time they are 30,
according to Under the Same Sun. Due to lack of access to medical care, many of
the cases are fatal.
People with albinism are at risk from witchcraft in 25
countries in Africa, including Kenya, Malawi, Burundi, Egypt and Mozambique.
According to a 2009 report from the Red Cross and Red
Crescent Societies, the body of a person with albinism can command as much as
$75,000 on the black market. Limbs can cost thousands of dollars. The gross
national income per person in Tanzania is $920 per year.
Many of these grotesque crimes are reported in Tanzania,
with 159 attacks and 76 killings since 2006. “It’s not just in Tanzania; it’s
all over Africa. It’s just that in other countries people don’t speak about it
so it’s not widely known,” said Senkoro, citing better press freedom and field
research as factors in Tanzania’s higher and more accurate data.
After the attack on her sister, Melissa fled her family’s
home and has never returned. A social worker brought her to the St. Francis
School in Moshi, where Under the Same Sun sponsors her tuition. The Our Lady
Sisters also housed and assisted Mariamu during part of her rehabilitation.
Mariamu attended a vocational school in Moshi and learned how to knit sweaters
using two prostheses. She now lives in Dar es Salaam, while Melissa stayed in
Moshi.
“I want to become a lawyer after I finish secondary school,
because I want to study security laws to protect albinos,” Melissa said. “I
want to tell people not to believe in witchcraft, but it is not so easy to
change their minds.”
‘The fence is not high enough’
The St. Francis of Assisi School for the Abled and Disabled,
run by the Our Lady of Kilimanjaro Sisters, is located in a pastoral village on
the highway from Arusha to Moshi, the popular tourism destination that is the
jump-off point for treks to Mount Kilimanjaro or safaris in the Serengeti
National Park.
The school has 268 students, 42 of whom have albinism and
issues with low vision. Other students have disabilities, including deafness,
total blindness and birth defects, and some have no disabilities but are orphans
or children from disadvantaged backgrounds. The school puts an emphasis on
teaching all the children together.
“When we are
inclusive, it helps the children because there’s interaction,” said Sister Mary
Benedicta Mosha, the director of St. Francis. “When they’re studying alone,
they feel inferiority. They think, ‘Well, I can’t see, so I won’t work, I’ll
just wait for someone to help me.’ But here, they go together, they play together,
and they help each other.”
The residential school offers a solution to children with
albinism who were not attending school. Some were the victims of attacks or had
family members who were attacked. Others were kept home purposefully because
the parents were ashamed or scared.
Even at the school, the students with albinism are still at
risk for kidnapping or attacks. “Here there is a problem with security, the
fence is not high enough, people can just jump over it,” said Mosha. “So we
take turns — nuns, teachers, caretakers — to sleep outside to make sure that
the albinos are safe.”
Mosha knows that it’s not really about building a better
wall, which is only a short-term solution. The real mission is to change
people’s perceptions.
Humanizing people with albinism, village by village
Peter Ash, a Canadian pastor and real estate entrepreneur
who also has albinism, founded Under the Same Sun in 2009. The organization
aims to bring the issue of attacks against people with albinism to wider
attention in Tanzania and around the world. One approach is through sponsored
TV commercials and radio spots in Tanzania, featuring people with albinism
talking about their lives and fears.
But the thrust of their advocacy is done in the most remote
parts of the country, going village by village to explain what causes albinism.
The discrimination stems from the fact that few people understand what causes
the condition, they say.
Albinism is a genetic mutation that happens when both
parents are carriers of the albinism trait. If parents have normal pigmentation
but both carry the recessive gene, the child has a 25 percent chance of having
albinism.
Under the Same Sun visits a different region of Tanzania
every three months, traveling to at least 10 villages and making presentations
for 500 to 3,000 people. The seminars combat misinformation, such as the belief
that if you rape a person with albinism, you’ll be cured of AIDS. The activists
have also encountered situations where doctors refuse to treat patients with
albinism because they’re worried about becoming infected themselves (genetic
conditions are not infectious). But the biggest step toward humanizing albinism
is simply introducing communities to successful, educated, confident people
with albinism.
“The first time we went out for a seminar about albinism, we
were afraid of taking people with albinism with us to remote villages,” said
Vicky Ntetema, a former BBC journalist who was one of the first to investigate
the phenomenon and bring the atrocities to a world stage. Ntetema won the
International Women’s Media Foundation award for Courage in Journalism in 2010
for her work exposing the killings. “But when Perpetua, for example, stands there
and says, ‘I have albinism, I am educated, I went to school, I faced challenges
but I went to school,'” explained Ntetema, “she says, ‘Here I am, I’m a
lawyer.’ And people go: ‘What?! So they’re intelligent also? So they can go to
school?!'”
“People with albinism lack (self-esteem) because from the
time they were born, fingers pointed at them — ‘There goes a ghost, there goes
a curse, there goes a stupid person,'” Ntetema continued. “These people cannot
do anything, they’re just a burden to their parents and their community.’ If
you’re a curse then every natural disaster that’s happening in your area in
your community is your fault. You are to blame.”
The “aha!” moment at the village training sessions, when
listeners start to grasp that people with albinism do not have black magic
powers, comes when the presenters bring out a poster showing how albinism
occurs in every living thing. “When we say that there are animals with
albinism, and plants with albinism, people are like, ‘wow,'” said Senkoro.
In areas where albinism is prevalent, it’s also important to
educate parents and teachers about the disabilities that can come as a result
of the mutation.
One of the characteristics is low vision. But when no one
knows about that effect of albinism, the child struggles in school, unable to
see the blackboard or follow along with the class. The child often ends up
failing tests and needing to repeat grades. The students either run out of
funds or get frustrated and drop out. Now the village workshops include a
section for teachers on how to support students with albinism, ideas as simple
as moving them closer to the blackboard.
Another serious issue is skin cancer. It is treatable with
liquid nitrogen, if caught in the first stage, but a lack of education and
access to medical services means it is often fatal. Many families are ignorant
that children with albinism must wear long sleeves and hats to protect their
skin, and sunscreen is too expensive for most Tanzanians.
Shining a light
Coverage in the local press is also helping to change
people’s minds. The headlines sound too gruesome to be true: Desperately poor
parents sell their children’s fingers. A child is kidnapped and sold by his
uncle. But the simple fact that there are headlines in local papers is an
important first step toward raising awareness, Senkoro said.
Mariamu Stanford, who now lives at a home sponsored by Under
the Same Sun for victims of attacks, became a de facto spokeswoman for victims
when she went to court against her attackers, one of the first to do so.
In 2014, a judge dismissed the case, claiming that, due to
Mariamu’s low vision, she could not have identified the attacker at night.
Mariamu said she recognized the voice of her neighbor, who had lived next door
for seven years and had verified her whereabouts the day before the attack.
She sees the judge’s decision as another example of
prejudice against people with albinism. Today, she is struggling to support
herself, as the prostheses that allowed her to knit no longer fit.
Mariamu’s 8-year-old
son, Elisha, who does not have albinism, says he wants to be a police officer
when he grows up, so he can “arrest all the bad guys who hurt people with
albinism,” she said.
“The reason why there’s a high level of stigma and
discrimination is that they don’t understand about albinism. They don’t
understand why we exist,” Mariamu said. “When ordinary people understand what
it is, they’ll treat us like human beings.”
Melanie Lidman is Middle East and Africa correspondent for
Global Sisters Report and is based in Israel. A version of her report appeared
on the GSR website
Source: Christian Headlines
Photo: Melissa Stanford was 7 years old when her sister
Mariamu was brutally attacked and lost both of her arms. Today Melissa is in
sixth grade and dreams of becoming a lawyer to advocate for rights of people
with albinism.
Photo courtesy: Global Sisters Report / Melanie Lidman
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