ISOLATED: A 12-year-old Malawian girl at her home in Nkole. Six people with albinism have been killed in Malawi since December. Picture: Gianluigi Guercia  / AFP
ISOLATED: A 12-year-old Malawian girl at her home in Nkole. Six people with albinism have been killed in Malawi since December. Picture: Gianluigi Guercia / AFP
RIGHTS CRUSADER: Ikponwosa Ero fights for the rights of people born with albinism. Picture: AFP
RIGHTS CRUSADER: Ikponwosa Ero fights for the rights of people born with albinism. Picture: AFP
Being born with albinism can be tantamount to a death sentence, if not worse, especially in sub-Saharan Africa.

These members of the community suffer the most extreme forms of human rights violations, attributed to the myth their body parts are a source of good luck or presumptions they are a curse to families.

Most harrowingly, they are hunted for their body parts and even their waste is collected for ritual purposes.

A majority of people with this congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes, are women and children.

They also face entrenched discrimination and stigma, extending to their family members.

A trend has also emerged whereby parents and relatives collude with syndicates in the killing of people with albinism.

In Mozambique, it is believed masterminds operate in a secretive but powerful cross-border network akin to that of drug barons.

In Malawi, the UN fears that people with albinism are on the brink of extinction following relentless macabre attacks.

Gilbert Daire, former president of the Association of the People with Albinism, cheated death recently when a mob tried to gain access to his Lilongwe home with the intention to kill him.

They fled the scene after neighbours intervened.

A 17-year-old boy with albinism was not so lucky. He was choked and hit to death with a sharp object.

He was attacked by a renowned businessman, becoming the 19th recorded albino to be killed across Malawi since 2014.

In Tanzania, where albinos represent one in every 1429 births – the highest rate in the world – some politicians aspiring for office in the 2015 polls were accused of buying body parts of albinos for witchcraft and purported lucky charms.

In a recent South African landmark court case, a traditional healer was sentenced to life in jail for masterminding the killing of an albino woman whose body parts he assured would bring luck to three co-accused.

The trio has also been imprisoned.

These are among 600 attacks that have occurred around Africa in the past decade, with almost two-thirds of the victims being children.

It is against such horrors that the UN appointed Nigerian Ikponwosa Ero as its first independent expert on the enjoyment of the human rights of persons living with albinism.

The UN’s Human Rights Council created the position in 2015 to focus attention and provide much-needed information and discussion on the issue.

Ero’s duties include identifying, exchanging and promoting good practices; engaging in dialogue and consulting with states and stakeholders regarding the issue; and gathering information on violation of the rights of those living with albinism.

In an interview, she said she had become aware of her condition, that affects one in 15000 people in sub-Saharan Africa, at the age of 4.

“The impact of the difference was better understood around the age of 7,” she said.

“I quickly learned that I often caused people to react with a mixture of mockery, derision, disgust, laughter or amazement.”

Initially, she was confused and asked her mother to explain why she was different.

“For all I cared, I no longer wanted to be different – now that I saw the consequences.

“She gave me some explanation which really helped at that time including: ‘God made you this way so others – who are not God – have no right to question or mock your appearance’. This helped me accept myself on an intellectual level, but I remained weak in the face of taunts from many people.”

The name-calling is most vivid in Ero’s memory.

“I could virtually not go anywhere without being called a name associated with albinism: Afin! Oyinbo pepe! Unfortunate European!”

She remembers children and at times adults chanting songs deriding her.

“These events often came with feelings of helplessness. How do you even start to defend yourself against others that often outnumber you?

“Essentially, it became very clear to me that upon encounter with anybody, my albinism would (understandably) be the first thing they saw and it would unfortunately be the only brush by which they would colour my personality and define expectations of me.”

However, there were a few people who reached out.

“They seemed colour-blind when they met me. They introduced themselves and just started conversing like I wasn’t different,” Ero said.

“This often threw me off at first and then a deep sense of appreciation would often follow. Interestingly enough, I have ended up making friends in both groups: the mockers and the colour-blind.”

She said one of the most horrendous violations she had heard about was how a 12-year-old boy with albinism had been attacked by someone who had conspired with his biological father and his stepmother.

He ultimately survived but lost one arm and his other hand was seriously maimed.

His amputated arm was never found. It is presumed that it was sold for use in a witchcraft ritual.

“There are other stories of attacks targeting persons with albinism which are worse than this, but which I cannot even bring myself to describe.

“However, I believe justice is rising for all those who have been victimised by these practices.”

Inspired by her personal experiences, Ero, a lawyer, has spent the past decade involved with issues regarding rights of people with albinism. Among her prominent roles is being the international advocacy and legal officer for Under the Same Sun, an NGO with a focus on albinism.

Ero, who is based in Canada, has published extensively on the issue, including a handbook on rights for people with albinism, and a guide on albinism for educators.

“My experiences have certainly formed part of who I am today. From them, I learned that, first, quantity does not mean truth or rightness,” she said.

“Just because so many people decided to mock me due to my albinism does not mean they were right.

“I learned to be patient with the rough start that sometimes accompanies some eventual good relationships. Above all, these experiences among many others have fuelled my passion for the work I do today at the UN Human Rights Council and around the world.”

She added: “I never knew I would ever be in this position, but I suppose that is the most interesting fact of life: the unpredictability of most things.

“For me, my current role is a calling or vocation. Essentially, it is something that I sense I ought to do. I look back and see that – while I did not notice it at that time – God was preparing me for this role.

“Everything, from personal experience to my education, has come together to provide me with many tools to serve.”

Ero’s mandate is to tackle the issue of attacks against persons with albinism with an end goal of stopping them completely.

This includes addressing relevant issues such as discrimination, stigma and other root causes of attacks, including harmful spiritual and cultural beliefs and practices.

“We are making good but slow progress,” she said.

“I am optimistic though because most governments are willing to co-operate with my mandate for example.

Many citizens have also shown a high amount of resolve to end the attacks.

“The political and collective will is present generally, but converting these into concrete, effective and sustained results remains the challenge.”

However, Ero believes there is reason to hope.

“Records of attacks seem to be reducing in the aggregate even though they continue in some specific countries.

“There are also some investments being made by government, civil society activists and myself in terms of filling gaps in law, raising public awareness, and improving self-advocacy among persons with albinism themselves.”

In conclusion, Ero hopes to leave the position at the end of her three-year term with the attacks against people with albinism eliminated, and with having ensured that steps are established to prevent and treat skin cancer, which kills far more people with albinism than physical attacks.

She also hopes that people with albinism will be more empowered to engage the international community through their growing number of civil society groups.

“I also hope significant inroads will have been made to address and stamp out the root causes of attacks, particularly witchcraft-related practices which have spurred the attacks.” – CAJ News