In the East African country of Tanzania, misconceptions can be tragically powerful.
A rumor has spread like wildfire in some areas of the country -- and
across the region -- that children born without skin pigmentation are
imbued with a special sort of magic. Some say that if you hack off their
arms, steal their blood or even take their lives, riches or luck will
come your way.
This belief has led to the murders of dozens of persons with
albinism, or PWAs. (They are often referred to as albinos, though
advocacy groups tend to reject this term as pejorative.) Those who
escape death may lose a limb and be doomed to live the rest of their
lives with a disability, to say nothing of the stigma.
As a result, PWAs in East and Southern Africa live their lives in
constant danger. Albinism is a genetic disorder that affects skin tone
and eyesight -- it does not affect development or mental capabilities.
But some Tanzanians have trouble seeing beyond the physical differences;
they refer to PWAs as
zeru, a Swahili word that means vapor or
ghost. Attackers’ consciences are eased by a pervasive belief that
their victims cannot die physically, since they are spirits to begin
with.
The fight against these deadly prejudices is international in scope,
and advocacy organizations in Tanzania and around the world argue that
awareness is the key to preventing the senseless violence against
innocent men, women and children with albinism.
A Shocking Pattern
Violence against PWAs has been going on for years -- perhaps even
centuries -- but it first erupted into public consciousness on an
international level in 2008, when a BBC World News reporter named
Vicky Ntetema went undercover in Tanzania to investigate the phenomenon.
Her reports got the attention of Peter Ash, a Canadian businessman with albinism who formed an advocacy organization called
Under the Same Sun, or UTSS, to address the issue.
Photo: Reuters/Katrina Manson
Peter Ash of Canada, founder of Under
The Same Sun, holds a boy with albinism in Mitindo Primary School in
Nyawilimilwa, Mwanza region of Tanzania.
“It was disturbing to me, so I began to research more,” Ash said. He
founded UTSS in 2009 and has since forged a relationship with the United
Nations. “I’ve been to Tanzania 12 times now in the last four years. We
now have an office staff there with 20 workers, 15 full-time, and about
half have albinism.”
The United Nations worked with UTSS staff to gather data for a Tuesday
statement condemning violence against PWAs.
“I strongly condemn these vicious killings and attacks, which were
committed in particularly horrifying circumstances and which have
involved dismembering people, including children, while they are still
alive,” U.N. High Commissioner for Human Rights Navi Pillay said.
The statement included examples of atrocities committed against PWAs
over the past two months. A 7-year-old boy was ambushed by attackers who
cut off his arm and killed him, as well as his grandfather, who had
tried to prevent the attack, on Jan. 31. A mother had her arm amputated
by a group of men on Feb. 5; she had been sleeping beside two of her
four children. A 10-year-old boy had his arm chopped off by two
assailants as he was coming home from school on Feb. 15.
Those reports, compiled by Ash’s team, have once again brought the
issue to international headlines. That’s a major victory, since
awareness is key in the ongoing fight against PWA discrimination. But
getting the word out in Tanzania itself is challenging due to a lack of
connectivity, especially in rural areas where the problem is most
pronounced.
From The Ground Up
Tanzania does have some capacity to deal with this issue. The country
operates as a multiparty democracy, though a single bloc called Chama
Cha Mapinduzi has dominated the government for decades. Although the
electoral process is generally fair, corruption impedes the government’s
functionality. Civil society is constrained by widespread poverty, and
the country is home to several nongovernmental civil protection groups
such as the
Legal and Human Rights Center and the
Tanzania Albino Society, both based in the commercial hub of Dar es Salaam.
The administration, led by President Jakaya Kiwete, has taken steps
to cut down on discrimination against albino citizens. Kiwete has spoken
out against the violence; he also nominated a woman with albinism,
Al-Shymaa Kwegyir, to serve in parliament in 2005. The next PWA to serve
as an MP, Salum Khalfan Barwany, was elected by a popular vote in the
Lindi Urban district in 2010. Moreover, dozens of witch doctors have
been arrested for peddling destructive myths about PWAs.
These are encouraging signs -- with better awareness efforts, the
portion of the Tanzanian population that condones terrible atrocities
against PWAs will continue to shrink.
Photo: Reuters/Emmanuel Kwitema
Elias Stariko, back left, sits next to
wife Farida Bwire, as he holds their son with albinism at the Golden
Valley English Medium School, a school sponsored by Under the Same Sun,
in Geita, Tanzania.
But as Pillay noted on Tuesday, there is still a long way to go. “As
well as physically protecting people with albinism, the government needs
to take a much stronger and more proactive approach to education and
awareness-raising campaigns to combat the stigma attached to albinism,”
she said.
The problem has deep roots, Susan DuBois, founder of a Virginia-based PWA advocacy organization called
Asante Mariamu, said.
“The government has been responsive, but they are very touchy about
this issue, because it’s such bad press and also because the witch
doctors are so deeply engrained in Tanzanian society. It’s really a
tough issue to navigate,” said DuBois, who has two children with
albinism.
“Traditional doctors or healers serve a great need in their
communities, especially where there is limited access to health care.
But there are some who have taken a dark turn. They have created this
black market; they claim that the skin, eyes, organ, tissues or blood of
people with albinism can be turned into potions that will confer wealth
or luck. As a result, there have been about 100 attacks on people with
albinism over the last five years and more than 50 deaths. We suspect
the numbers are actually higher, because nobody reports these things.”
Like Ash, DuBois was inspired to help after encountering media
reports of atrocities in East Africa. A woman named Mariamu Staford was
profiled on an ABC news program in 2009, and DuBois tuned in to watch.
She was both touched and horrified by what she saw.
Staford, a Tanzanian, had lost both arms and an unborn child in a
vicious attack that nearly cost her life. DuBois and her husband, Doug
DuBois, helped transport Staford to the United States, where she was
outfitted with prosthetic arms. Staford was also introduced to a local
U.S. congressman, Rep. Gerald Connolly, D-Va., who went on to sponsor a
bill that was passed in Congress in 2010, condemning PWA abuse in East Africa.
Mariamu, now back in Tanzania, is now using her prosthetic arms to
write, knit and help other PWAs who struggle with isolation. It’s a
story DuBois would like to see repeated may times over.
“Asante Mariamu is a small organization, and Tanzania is so big and
mostly rural,” she said. “It’s not well-connected in terms of Internet
or roads or trains, so it’s going to take a long time to change this.
It’s not going to happen overnight.”
Multiple Threats
The challenges people with albinism face go beyond discrimination and
persecution. In fact, their biggest mortal threat is not violence but
cancer -- unpigmented skin is ill-suited to deal with radiation from
sunlight. That’s why it’s rare for people with albinism in Africa to
survive past the age of 40.
“Skin cancer is a huge problem,” Ash said. “I have no melanin, a
natural substance in skin that protects from UVA rays. Exposure to the
sun, especially in really intense heat and in areas where farming is
common, is very dangerous. A lot of Tanzanians with albinism haven’t
been educated about the need to wear long-sleeve shirts, and they have
no access to sunscreen. But skin cancer is completely preventable.”
The susceptibility can result in sores and tumors, which can increase
the risk of being shunned by a family or a community. Related illnesses
can also make it hard to perform physical labor, which leads to the
cruel assumption that PWAs are inherently incapable or even lazy. In
that way, health concerns only add to a vicious cycle by entrenching
erroneous public attitudes about albinism.
Photo: Reuters/Alex Wynter/IFRC
A child with albinism poses at a picnic
organized by the Tanzania Red Cross Society at the government-run
school for the disabled in Kabanga, in the west of Tanzania near the
town of Kigoma on Lake Tanganyika.
PWAs also suffer from vision problems -- many, like Ash, are legally
blind. “In North America there are resources available, but in Tanzania
the problem is they go to school and can’t see the blackboard,” he said.
“Teachers already have their own notions, so they just assume these
children aren’t smart enough.”
As a result, children with albinism don’t get the tools or attention
they need, creating yet another vicious cycle by limiting access to
education.
UTSS and Asante Miriamu have worked to spread awareness about skin
damage and visual impairments and to disseminate the very simple tools
-- sunscreen, magnifying glasses -- that can be used to address these
challenges. Both organizations have also raised money for scholarships
to put children with albinism through school.
“It will be harder in Tanzania to say, ‘Look at those useless
people,’ once they are successful, contributing members of society,” Ash
said. “People with albinism will one day take their rightful place in
society, and these days will become a distant memory.”
Long Way To Go
People with albinism in rural areas of Tanzania are often isolated
within their communities. But in urban spaces, they generally have
better access to support groups.
The
Tanzania Albino Society
in Dar es Salaam is one testament to the determination of local
organizations to push for change, but the going is tough. Although the
society has received grants from the government, they have been small
ones.
Considering that so many atrocities against PWAs occur in remote
areas far from urban centers, advocates argue that more resources are
necessary in order to reach those communities one by one. But Tanzania
is one of the poorest countries on Earth, with a GDP per capita of about
$532 -- and it has other problems to contend with, including low
infrastructure, hunger, HIV/AIDS and malaria.
“Given the challenges that East African countries are already facing,
albinism is really a small part of it,” DuBois said. “A lot more kids
lose their lives to malaria every day than to albinism. So I recognize
that ours is a narrow issue, but nonetheless we’re deeply committed.”
She adds that, although her organization and others have been active in Tanzania for a couple of years, change is coming slowly.
“There has been steady movement, and I do think we’ll see a tipping
point after a few years. But we’ve seen attacks as recently as the past
few months, so that’s very upsetting," DuBois said. "I feel a renewed
sense that we really need to get the word out. It’s not over yet. It’s
not done.”
Photo: Reuters/Amar Jamal &
Japhet Felix displays his handwork during Tanzania Albino Day celebrations in Dar es Salaam, Tanzania.
Habari zote na Amar Jamal yahya 2013-2014
Na: Mwandishi wetu
TUNU: Napenda kumuita The Perfectionalist. Huyu ni mama wa mtoto mmoja, anaishi nchini Marekani. Ni mpole na anapenda kusikiliza watu. Anapenda kuchukua muda kabla ya kutoa maamuzi ya jambo analopenda. Ni mtafutaji na amekuwa akiniita baby.
SUNNA: Huyu ana visirani kama mdogo wake Wema. Anaishi Marekani. Nampenda sana, ni mcheshi na napenda kumuita majimaji kwani anapenda sana kula…yeye ni bata ndefu kwa kwenda mbele.
NURU: Ni mama wa watoto watatu, ameolewa na anaishi Dar. Napenda kumuita kubwa la maadui kwani hakuna kinachoshindikana kwake.
