albinism — World News, Travel and Social Action

There are many challenges for the Albino Community in Africa including discrimination, social exclusion and neglect.

Albino Child Getting His Vision Checked. IAPB/VISION 2020. CC BY-NC-SA 2.0

Albinism is a genetic disorder resulting in decreased production of a pigment called melanin. It affects the skin, hair and eyes, resulting in light color or no color. One in 1000 Africans have albinism, while in the United States it affects one in 20,000 Americans. People with this genetic disorder have been discriminated against and persecuted in Africa. Children with albinism are sought after for their limbs because witch doctors believe their bodies harness magical powers. Due to the extreme measures witch doctors use to attain children and adults, people with the genetic disorder (albinism) are sent to protection centers.

School Boy with Albinism. ViktorDobai. CC BY-NC 2.0

More than half of the African population believe in witchcraft. Families with children or members who have albinism are oftentimes frowned upon and members of the community believe that albinism is a result of being cursed. Many women are rejected by their partners after giving birth, husbands believing their wives had affairs with white men. Oftentimes, families don’t want to be associated with those superstitions and abandon their children. The rejection continues in school. Children face teasing and discrimination by their peers, and this affects the development of positive self identity. Research has shown that teachers and school administrators lack the specific educational needs and resources for children with albinism. The absence of support and care, drives up rates of truancy among these children. Adults face descrimination as well, especially for individuals living in rural areas where superstitions are heightened. Due to poverty and the need for education, many with the genetic disorder are illiterate and are forced into menial jobs, exposing them to the sun and skin cancer. Those who manage to finish school face discrimination in the work place and are rarely considered for promotions.

Teenage Girl Learning to Type. Alex Wynter. CC BY-NC-SA 2.0

Albino children and adults live in constant fear of being assaulted, kidnapped, murdered or having their limbs cut off. Witch doctors are common in Africa and believe that albino limbs mixed with magical potions are powerful. This belief is prevalent among many rural communities, even in politicians looking to win prospective elections. Witch doctors convince clients that bones and other organs of people with albinism will bring wealth, success and love to their lives. With this belief, clients pay up to $75,000 USD for an albino corpse while limbs can sell for $2,000 USD. For albino women, rape is prevelant. Women and girls are assaulted in the belief that intercourse with them can cure diseases, including AIDS.

As a result of these attacks, protection centers and boarding schools have been created for the safety of albino children. For example, the Buhangija Centre in Shinyanga, Tanzania. The center houses more than 300 children and protects them with guards who stand in front of the gates 24 hours a day. Only families and people who have been given government authority can enter the premises. The school provides an education, dormitory and meals free of charge. Although they provide safety and isolation for the children, the school headmaster Silliman Shabali Cabanya acknowledges this is not a long term solution. He believes society needs to be accepting and allow people with albinism to lead normal lives alongside other members of the community. He says, “keeping them hidden behind high walls and barbed wire is damaging for their development and long term psychological health.”

Young Man Protecting Himself From The Sun. Alex Wynter. CC BY-NC-SA 2.0

Lack of resources are the driving force in the preventable deaths witnessed yearly. Nine out of 10 people with albinism die between the ages of 30-40 due to skin cancer and the absence of sunscreen, hats, sunglasses and eyeglasses. The sun is extremely harmful to their skin and many don’t wear sunscreen because of its high cost. A sunscreen bottle can cost $14 - $19 USD depending on the African nation, about a sixth of the average monthly income in Senegal. In Zambia, medicine can be imported without being taxed, but sunscreen is considered a luxury cosmetic. It remains expensive and subject to tax, says John Chiti, executive director of the Albino Foundation of Zambia. There are some people, like 13 year old Chisha, who didn’t know what sunscreen was until he was admitted to the hospital for skin cancer. Currently, there is no policy that urges the government to produce or distribute sunscreen to people living with albinism. For those who can’t afford it, current solutions include wearing long sleeve shirts and trying to stay indoors as much as possible.

With so many attacks and discrimination taking place against the albino community in Africa, a significant milestone took place last month. Malawi Parliament welcomed the country’s first albino lawmaker, Overstone Kondowe, telling the press, “the victory is a clear demonstration that people are changing their attitudes.” Kondowe will be the first lawmaker to fund a national action plan on albinism.

To Get Involved:

Beyond Suncare is an organization that creates sunscreen for the albino community in Africa and distributes it to rural areas. They help educate and bring awareness to this genetic condition while employing 30 percent of local staff with albinism. To learn more about Beyond Suncare click here.

To support the albino community in Africa click here

CHINA: Love is Blind

Jennifer is a Communications Studies graduate based in Los Angeles. She grew up traveling with her dad and that is where her love for travel stems from. You can find her serving the community at her church, Fearless LA or planning her next trip overseas. She hopes to be involved in international humanitarian work one day.

In Malawi, Mozambique, Tanzania, and beyond, children and adults with this rare condition face widespread violence based on superstition—and fight for the right to live their lives free of persecution.

On the left, a baby with albinism. Kaysha. CC BY-NC-ND 2.0

On January 1 of this year, unknown assailants climbed through the window of Kwenda Phiri’s home in Nhkata Bay, Malawi, and hacked him to death, chopping off his hands and fleeing with them. Their motive? Phiri had albinism, meaning that—due to a rare genetic condition—he was born without pigment in his skin, hair, or eyes. Unfortunately, Phiri’s killing was far from an isolated incident. Across sub-Saharan Africa, people with albinism face physical violence and persecution based on superstition, often leaving them unemployed, isolated, and fearful of even leaving their homes.

Kidnapping and dismemberment, such as in the case of Phiri, is common, as body parts from people with albinism can bring in up to $75,000 on the black market. Witchdoctors perpetuate myths about the magical qualities of people with albinism, and make outlandish claims that their body parts can be used in charms and potions to summon wealth, power, and good luck. Babies born with albinism may be considered a curse and slaughtered at birth, especially in certain regions: in Tanzania, where the condition affects up to 1 in 1400 citizens, people with albinism are called zeru zeru, meaning “ghosts,” and assumed to bleed a different color or be immortal. Such superstitions have fueled more than 520 recorded attacks in 28 countries since 2006; Tanzania had the highest number, at more than 170 incidents. Attackers and witchdoctors rarely face legal action, and not a single buyer in this gruesome segment of the black market has ever been prosecuted.

The Nkhata Bay, Malawi, area, near where Kwenda Phiri was killed. Matthew and Heather. CC BY-NC-ND 2.0

For people with albinism who manage to escape fatal attacks, prospects for education and gainful employment are often dim. In Tanzania, only half of children with albinism complete primary school, and even fewer attend secondary. The condition typically affects vision, leaving children without access to glasses to struggle and underperform academically. Adults with albinism are met with few job opportunities, and often fall into poverty. Women with albinism suffer specific and especially dangerous injustices. Unfounded myths run rampant that sex with a women who has the condition can cure HIV/AIDS, leading to many women with albinism contracting AIDS through this heinous variety of ritual rape. Even after death, persecution persists: Many families whose relative with albinism has passed away do not hold the funeral in public, for fear that the grave might be dug up and the corpse stolen. This practice of quiet, unnoticed burial may also perpetuate superstitions regarding immortality.

Attacks are especially prevalent in certain countries—namely Tanzania, Malawi, and Mozambique, according to Turkish news outlet TRT World. Indeed, Nyasa Times, the online breaking news source that reported Phiri’s murder, stated that “Malawi faces ‘systematic extinction’ of people living with albinism if they continue to be murdered for their body parts.”

The general culture of neglect and harmful behavior toward people with albinism also exacerbates concerns about skin cancer, to which people with albinism are particularly susceptible given their lack of pigmentation. Parents often do not know about the importance of covering up in the sun and copiously applying sunscreen; in fact, some actually take their children with albinism into the sun to intentionally darken their skin, leading to dark-colored pre-cancerous lesions that only encourage the parents to continue. Only 2 percent of people with albinism in sub-Saharan Africa live beyond age 40—largely due to the scourge of cancer—and most children with albinism as young as 10 already have some early form of the disease.

In response to the unchecked spread of skin cancer, a company called Kilimanjaro Suncare, or Kilisun, has designed a sunscreen especially for people with albinism. When the product was released in 2012, it was used to help 25 children; as of 2017, it was being given free of charge to 2,800 people at clinics taking place every four months. Over half of those receiving Kilisun were children.

While skin cancer can be mitigated with appropriately distributed medical care, resolving the culture of violence against people with albinism will be a longer and more arduous process. In its 2017–2018 report, Amnesty International acknowledged the situation of people with albinism in Mozambique for the first time ever, estimating that 30,000 people experienced discrimination for their condition and pointing to a spike in incidents of persecution. In Tanzania, a charity called Under One Sun runs an education program for students with albinism and a summer camp for students who have been abandoned by their families due to their condition, as well as performing public advocacy and outreach through seminars and film screenings. The Albino Foundation offers similar advocacy services in Nigeria, aiming to empower people with albinism and educate the Nigerian and global societies about the realities of the condition.

For some individuals with albinism, art has served as a powerful means to address the injustices hindering their lives on a daily basis. Singer-songwriter Salif Keita—who endured bullying and rejection as a child in Mali due to his albinism, and who founded a global foundation in 2006 to aid those who are afflicted—dedicated a benefit concert in November 2018 to a five-year-old girl with albinism who was kidnapped, tortured, and killed in Mali in May of that year. More than 100 politicians, diplomats, and people with albinism attended the event.

Arriving to Sengerema region in Tanzania, where a life-sized statue dedicated to people attacked due to their albinism can be found. TANZICT Project. CC BY-NC-SA 2.0

In Sengerema, Tanzania, a monument has been erected to honor those who have been assaulted and murdered due to their albinism. The statue portrays a dark-skinned father and mother; the father holds his light-skinned child with albinism on his shoulders, and the mother places a hat on the child’s head to keep them safe from the rays of the sun. Around the monument are etched the names of people with albinism who have been attacked, representing an homage to those lost to the anachronistic attitudes of the past. Standing tall above the ground, the life-sized statue—which was made by Tanzanian artists with disabilities—imagines a possible future in which people with albinism can live safely and normally regardless of their pigmentation.

TALYA PHELPS hails from the wilds of upstate New York, but dreams of exploring the globe. As former editor-in-chief at the student newspaper of her alma mater, Vassar College, and the daughter of a journalist, she hopes to follow her passion for writing and editing for many years to come. Contact her if you're looking for a spirited debate on the merits of the em dash vs. the hyphen.