08 Aug Better Protection for Africans with Albinism
Abuja – As children, Ikponwosa Ero and Martha Mganga were discriminated against, harassed, and abused because of their very light skin and almost white hair. The women, however, persevered through the misery and are now fighting, each in their own way, for the rights and well-being of people with albinism.
What was no more than normal for her peers, such as playing outside or going to the store, was a torture for the now 39-year-old Ero from Nigeria. “’Is it really necessary?’ That was always the key question before I went outside. The walk from home to, for example, the local store and back was always characterized by harassment, abuse and verbal abuse,” she recalls, adding that shopkeepers regularly did their utmost not to touch her fingers while paying.
People in the street also regularly tugged at her skin and hair, and sometimes there were blows in class when she did not read the text on the blackboard well enough, not because she could not read but because she, like many other people with albinism, did not read well. “It was very difficult. As a child you don’t understand why people hate you so much.”
Ikponwosa Ero from Nigeria protects the human rights of albinos as a special UN envoy. Ⓒ UN
Growing up was also an absolute hell for Tanzanian Martha Mganga. In addition to the problems that Ero faced as a child and teenager, she was also abused by family members and later by the man to whom she was married off at the age of seventeen. Four years after the forced marital commitment she jumped to desperation in the river, hoping to drown. “I didn’t want to be a burden anymore for my family,” she says.
Despite the misery both women are grateful today. They are still alive. In some communities, babies with the genetic pigmentation disorder are often murdered after birth, Mganga says. “We are often seen as cursed and bringers of misfortune.”
This superstition has taken another conflicting turn in the last ten to twelve years. Although people with albinism are still seen as the perpetrators of doom, their body parts would at the same time have magical effects, for example in financial terms. “Some men also think that unprotected sex with an albino woman heals them from HIV,” says Ero.
Malawi was regularly in the news in that regard in the past year. One of the most recent victims was 14-year-old Goodson. The boy was dragged into a car in February this year by armed attackers. His body was found a few days later without hands, teeth and genitals in a river. In the end, the teenage stepfather confessed to the murder. “They had promised me 800,000 kwatcha ($1,050USD). A market for body parts had been found and I would get the money right away,” the man in court said.
The abduction of Eunice Nkhonjera also made the front pages. The girl of one and a half disappeared a few months ago in the middle of the night when she was sleeping at home. Nobody knows what happened to her, but they fear the worst.
The two children are just two of the 600 African albinos that, according to the UN, have been abducted, abused and murdered since 2007.
As if this is not enough, albinos have to deal with another danger: the burning sun. Because they have little or no melanin in their skin and eyes, the chance of burning, skin cancer, and eye problems is very high. Sunscreen, sunglasses and protective clothing offer a solution, but are too expensive for many people in Tanzania, where 47.7% of the population live below the poverty line of $2USD per day. “One bottle of sunscreen with a factor of 50 can easily cost 50,000 Tanzanian shillings ($22 USD),” says Mganga, who has undergone skin cancer surgery ten times in recent years.
The Anglican ministry leader refuses to stop and take things easy. Instead, she has been running Albino Peacemakers since 1986. This organization takes care of about 125 children between the ages of five and nineteen by accommodating them in specially selected public schools and boarding schools where they can be themselves without danger and stigma.
Martha Mganga: “We are often seen as cursed and bringers of the accident.” Ⓒ Lahash International
“This takes into account their special needs such as protective clothing, sun hats, and sunscreen,” she says. That costs around $800USD per child per year. “Through the American organization Lahash International, 25 of our 127 children are now sponsored. We cannot do our work without them,” says Mganga, who has also established a mobile clinic where albinos from the Arusha area can have their skin checked for free.
In the meantime, Ero has been traveling as a UN envoy to protect the rights of people with albinism since 2015 to ensure that governments protect people like her and Mganga better and tackle those behind the manhunt of albinos harder.
That seems to be paying off. Many countries such as Malawi, Mozambique and Kenya have developed national action plans in addition to tightened laws to protect albinos. “Kenya is the most progressive as the government makes budget money available every year for the well-being of people with albinism,” says Ero.
That money is spent to distribute sunscreen, sunglasses and protective clothing to poor albinos. “Kenya has even appointed someone who works for people like me within the National Council of Disabled People. It is impressive. No other African country does that.”
To sponsor a child through Lahash, visit lahash.org/albino-peacemakers
Special thanks to Miriam Manaak for the permission to reprint her article.