Albinism: ‘Just a normal human being’

Henriette Lamprecht – When people see people with albinism, they see bad luck and poverty.

“Even if we’re not presidents and ministers, we’ve made our parents proud. We’re not limited, people limit us,” says Bino (Matthew) Haihambo (33), who was born with albinism.

Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. It occurs in all racial and ethnic groups throughout the world.

Bino never actually thought he was different to others, only that he had to stay out of the sun, he says.

“I have the same dreams, the same aspirations as everybody else.”

Bino was born in the Omutundungu village in Okalongo in the Omusati region, where his parents still reside. Due to discrimination within the community, his parents decided to send him to boarding school in Keetmanshoop.

“We grew up hearing bad fairy tales about albinism. Due to cultural beliefs people in the village see people with albinism differently. Some see it as good for witchcraft, while others say it is bad luck to have such a person in the community. It’s all due to ignorance and religious beliefs.”

According to Bino he didn’t experience any discrimination while at school and was given the support he needed.

“I was given extra notes and sat in the front of the class.”

With the help of the Michelle McLean Children’s Trust he received his first pair of glasses in grade 5.

Although the school environment catered to his specific needs, Bino feels more needs to be done to educate and also empower teachers.

“The teacher is also from a community with certain beliefs and values. If you haven’t been exposed to children with albinism and their specific needs, it also makes it difficult for them. Some of us have fast minds and slow vision, some are hearing impaired. Teachers are dealing with two types of difficulties where the child can’t see them and or can’t hear them.”

A solution would be for the education system to present teachers the opportunity through tertiary education to empower themselves to educate children with albinism appropriately.

Bino attended the school for the visually impaired in Windhoek for a month, but felt he didn’t belong.

“I can hear and see. I felt it was more for slow learners. I was told to read with my hands and I was wondering if I’m being prepared for when I go blind.”

As an entrepreneur he’s a jack-of-all-trades. His company involves everything from construction to events management to logistics.

“Now the community sees I’m just a normal human being.”

However, not enough is done to empower people with albinism in Namibia, says Bino.

“There is a day and a week for albinism when sun lotions and hats are distributed. Even though I’m grateful for that, people are also destroying the albinism community by giving them grants. This makes them dependent because they now only want handouts.”

According to Bino only one type of sunscreen is distributed to all people living with albinism.

“Do you really want to say our skins are all the same? Is it really a case of one size fits all? This is nonsense – who came up with that concept?”

It’s important to differentiate, says Bino, as people with albinism are from different backgrounds, races and have different religious beliefs.

Another concern is that not many people with albinism are in positions of power to actually sustain themselves.

Although people with albinism are encouraged to apply for jobs because it falls under what Bino calls “the government’s window dressing for people with disabilities”, not much happens after that.

“Disability is actually such a broad term. It really needs to be dignified in such a way that it caters for all people with disabilities.”

Another myth is that people with albinism have impaired vision, which Bino quickly dispels.

“I’ve travelled this country and all the regions by myself and without a driver.”

The biggest myth according to him is that people with albinism are weak.

“We’re not weak people. I run a lot of entities and I run them successfully. After seeing my work, people start respecting me for what I do. It’s not what people hear about you, but what they see you do. Respect is not deserved but earned.”

Bino says successful people with albinism are out there, but just not visible to those who have no interest in albinism.

“I haven’t seen people with albinism being integrated and given a fair chance to prove themselves. We’re out there, we have experience.”

The change should start in our own working environments, says Bino.

“You walk into an interview and people see you differently. This is where the challenge lies. I grew up in an environment where you’re seen as nobody. This makes it very difficult to come out and show who you are.”

Bino tries to practise what he preaches in his own company, giving people the benefit of the doubt and thereby a deserved chance.

He calls president Hage Geingob’s Harambee Properity Plan to eradicate poverty a noble idea.

“We are however so many different people who need to be assisted differently. Everyone can’t be placed in the same box. Every person has unique features and what applies to one person doesn’t necessarily apply to others.”

Bino and his three brothers all have albinism, but while he has carved out a sustained living for himself, the same doesn’t apply to his brothers.

“The difference is that I rebel against handouts. That’s what makes me successful.”

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