Governments, the UN and Human Rights groups step up advocacy
When Moses Swaray stepped onstage to sing “Amazing Grace” in the auditorium of the Unity Conference Centre in Monrovia, Liberia, the audience, including President Ellen Johnson Sirleaf, stood up to applaud; some wiped away tears.
Mr. Swaray, who is living with Albinism, beat 11 other finalists to win the 2007 edition of A Star is Born, the national talent hunt organised by the United Nations and the Liberian government.
President Sirleaf warmly embraced Mr. Swaray on stage, calling him “a blessing to our country.”
Mr. Swaray might have been killed as a child had his father heeded the warnings of a close friend to get rid of the infant because Albinos have supernatural powers and bring misfortunes to a family.
People living with albinism suffer from abnormal skin pigmentation resulting from a hereditary inability to produce melanin in their skin cells, according to the US National Library of Medicine. Melanin is a dark pigment that is responsible for producing skin, hair and eye colouration. Albinos suffer from vision problems and are susceptible to skin cancer.
While growing up, “some people treated me as less of a human being because they believed I had supernatural powers,” Mr. Swaray told Africa Renewal in an interview. Having relocated to the US some years ago, he is now a highly sought-after gospel artist within the African diaspora community.
Not all albinos in Africa have the same luck and talent as Mr. Swaray. Malawian authorities announced that between January and May 2016 alone, six albinos were murdered, including 17-year-old Davis Fletcher Machinjiri, who had gone to watch soccer.
The human rights organization Amnesty International quoted the Malawian police’s description of the gruesome murder of Mr. Machinjiri: “About four men trafficked him to Mozambique and killed him. The men chopped off both his arms and legs and removed his bones. Then they buried the rest of his body in a shallow grave.”
There are superstitions in some parts of Africa that albino body parts bring wealth, power or sexual conquest, and that having sex with a person living with albinism cures HIV and AIDS. Attackers sell albino body parts to witch doctors for thousands of dollars, according to Amnesty International.
In Tanzania, some 75 albinos were reported killed between 2000 and 2016.
There have also been reports of albino killings in South Africa, although such crimes are less common there than in Malawi, Tanzania and Burundi. Last February, a South African court sentenced a traditional healer to life in prison for murdering a 20-year-old woman living with albinism.
The Office of the UN High Commissioner for Human Rights (OHCHR), the UN agency that deals with human rights issues, reported in 2016 that albino hunters sell an entire human corpse for up to $75,000, while an arm or a leg could fetch about $2,000.
Alarmed by rising incidences of albino killings, the UN Human Rights Council (which works closely with OHCHR) in June 2015 bestowed on Ikponwosa Ero, herself living with albinism, the title of “Independent Expert on the enjoyment of human rights by persons with albinism.”
In an interview with Africa Renewal, Ms. Ero termed the albino situation in Africa “a tragedy.” She referred to the 7,000 to 10,000 albinos in Malawi and thousands of others in Tanzania, Mozambique and other countries as “an endangered people” facing a “risk of extinction if nothing is done.” Tanzanians call albinos zeru zeru, meaning “ghosts.”
People living with albinism are found in every country. In the US, one in 20,000 persons has albinism, while the figure is generally believed to be one in 1,500 in Tanzania, and one in 5,000 to 15,000 in other sub-regions of Africa, according to the BBC, which acknowledges a lack of full-scale studies of the albino population.
Lacking pigmentation, albinos are particularly vulnerable to what advocacy groups call a “silent killer”—skin cancer. Sixmond Mdeka, a Tanzanian reggae star, has been battling skin cancer since birth. Mr. Mdeka told the BBC, “I used to go all around without protective clothing. I was burned by the sun everywhere.…Sun is our number one enemy.”
Without the right treatment, up to 90% of albinos die before the age of 40 in Africa, medical experts say. Mr. Mdeka, who is almost 40 years old, is already experiencing health complications. Doctors operated on his left ear last September to remove a facial skin cancer called melanoma.
There are very few health services in Africa to manage albinism, and many of those living with the condition cannot afford badly needed sunscreen and protective clothing. For example, a bottle of sunscreen that lasts for two weeks sells for about $15 in Tanzania, a country where most people live on less than $1.50 a day.
Threats to albinos’ lives are compounded by “exclusion, stigmatization and denial of basic rights such as the right to education and health,” according to Amnesty International. Ms. Ero recounts her childhood experience: “Isolation and stigma came from peers and adults, including name-calling and mockery, and exclusion from certain community activities.”
She didn’t receive support for her impaired vision, and was sometimes flogged when she tried to explain her difficulties in a classroom.
“I went through high school without glasses and struggled very hard to see the writing on the blackboard,” recalls Mr. Swaray.
“Even mothers of children living with albinism are often abandoned after being accused of infidelity or…deemed accursed or abnormal. Whole families can be excluded or ostracised for having a member with albinism,” says Ms. Ero, who is now advocating for “massive and sustained public education.”
Raising awareness to debunk albinism myths may change some people’s attitudes, but Ms. Ero lists other practical steps countries can take, including dedicating “an office and budget to the issue, creating a telephone hotline to report crimes and threats, regulating ‘witchcraft’ and traditional medicine practitioners, among others.”
“It’s time African governments paid attention to how albinos are treated. It’s time we all spoke out. We need actions,” insists Mr. Swaray.
Governments and other organisations are already taking actions. Under the Same Sun (UTSS), a non-governmental organization with offices in Tanzania and Canada, is distributing educational materials in Tanzanian schools that dispel the myths surrounding albinism.
To raise awareness of albinos’ plight, the UN named 13 June each year as International Albinism Awareness Day. Every September is Albinism Awareness Month in South Africa. Earlier this year South African model and inventor Mala Bryan introduced a doll with albinism. Named Alexa, the doll is intended to help change misconceptions around albinism.
Some countries are stepping up efforts to prevent attacks on people with albinism. Mostly due to Tanzanian police interventions, albino murders dropped from 22 in 2008 to 11 in 2015. Ms. Ero commended the Tanzanian government and civil society for providing visual aids and other assistance to albinos.
“There have been positive measures [by the Tanzanian government] to address witchcraft practices, including the registration of traditional healers, [but] full oversight over their work has still not been achieved, and confusion still exists in the minds of the general public between witchcraft practice and the work of traditional healers,” Ms. Ero added.
Malawi’s President Peter Mutharika and other top government officials have condemned attacks on albinos. In 2015 the government announced a National Response Plan and appointed a special legal counsel to assist with investigations.
While she commends the Malawian government’s response plan, Ms. Ero pointed out that “the absence of resources attached to the plan has drastically delayed its implementation.” And Amnesty International notes that while some perpetrators have been convicted, most of the country’s crimes against albinos are still unsolved.
Albino rights groups are hopeful and eager for people to understand albinism and accept those with the condition. Albinos are just like everyone else, says Mr. Swaray. “When I look in the mirror, I see a man on his way to greatness; I do not see an albino,” he quipped.
Written by Pavithra Rao.