On a mission to empower people with albinism
• ‘They are not mistakes. They are not cursed. They have purpose.’
The Tuesday afternoon sun glints off the windows of Etuna Guest House in Ongwediva, casting warm hues across the room as Prince Eliaser Moses leans back in his chair.
Moses agreed to sit down with Namibian Sun this month to talk about his life and what it means to live with albinism, in honour of World Albinism Day, commemorated annually on 13 June.
Speaking with calm conviction, his voice is soft, but his words carry the weight of a story rooted in the fight for dignity for people living with albinism.
I had not met him before, but his presence is undeniably striking – not just because of the condition he was born with, but because of the quiet strength that surrounds him.
Moses reflects on his childhood with a smile. “I was privileged,” he said. “I grew up in an environment where people with albinism were taken care of. I felt unique, special and accepted at home.”
Unlike many others living with albinism, Moses' early years were filled with love and protection. His mother, understanding the vulnerability that came with the condition, shielded him from the harsh sun, ensuring he stayed safe indoors and avoided strenuous work that might expose his sensitive skin.
“Everyone showered me with love. Though I wanted to play, to herd cattle like the other children, my family, especially my grandmother, ensured I was safe,” he recalled.
An unsafe world
But beyond the warmth of his home, a harsher reality awaited. As Moses grew older, he stepped into a broader world where many like him were not so fortunate.
“I became an activist because I saw others with albinism live a completely different life from mine,” he explained.
His expression tightening, he adjusted his chair and sat up straight as though to really draw my attention.
He continued: “While I was loved, others were shamed. Bullied. Left to feel less than human. It just didn’t sit well with me and that is when I decided I had to do something,” he said.
Moses underlined that the stigma many people with albinism face – from being ostracised at school to being viewed through the lens of dangerous superstitions – is far from harmless, it puts their lives at risk.
“Children are teased for having low vision. They are told they can’t see far. They are bullied and made to feel unwanted. As a result, some grow up struggling with low self-esteem, battling not just the sun but society itself,” Moses said, adding that “I chose to be their voice. To remind them they are not mistakes. They are not cursed. They have purpose.”
Saving lives
Albinism is a genetic condition marked by a lack of melanin, affecting both skin and eyesight. One of the gravest challenges is exposure to the sun – without melanin, the risk of developing skin cancer is dangerously high.
For this reason, Moses is backing a push for the World Health Organisation (WHO) to include sunscreen on its list of essential medicines for persons living with the condition.
“We need sunscreen like others need insulin. Health is a human right. WHO must add sunscreen to the list of essential medicines. This will save lives,” he said.
Living with purpose
Moses noted that the superstitions surrounding albinism – such as the belief that families with albinos are cursed – are not only deeply saddening but can also devastate lives.
“They say we don’t die – we disappear. They say our bones and teeth are used for rituals. These beliefs have made people with albinism targets,” he said, his voice barely above a whisper.
He paused and then continued: "I have not seen anyone disappear. But I have seen lives taken. Futures stolen.”
This fear, Moses said, casts a long shadow – especially in countries where myths about albinism are still tied to witchcraft and money rituals.
It’s noon, and we must wrap up the interview. Moses – activist, advocate and light-bearer – continues his mission.
Not just for himself, but for every child born with albinism. He carries this mission forward in his soon-to-be-released book: 'Beyond the Skin: Understanding Albinism with Pride and Purpose'.
- [email protected]
Moses agreed to sit down with Namibian Sun this month to talk about his life and what it means to live with albinism, in honour of World Albinism Day, commemorated annually on 13 June.
Speaking with calm conviction, his voice is soft, but his words carry the weight of a story rooted in the fight for dignity for people living with albinism.
I had not met him before, but his presence is undeniably striking – not just because of the condition he was born with, but because of the quiet strength that surrounds him.
Moses reflects on his childhood with a smile. “I was privileged,” he said. “I grew up in an environment where people with albinism were taken care of. I felt unique, special and accepted at home.”
Unlike many others living with albinism, Moses' early years were filled with love and protection. His mother, understanding the vulnerability that came with the condition, shielded him from the harsh sun, ensuring he stayed safe indoors and avoided strenuous work that might expose his sensitive skin.
“Everyone showered me with love. Though I wanted to play, to herd cattle like the other children, my family, especially my grandmother, ensured I was safe,” he recalled.
An unsafe world
But beyond the warmth of his home, a harsher reality awaited. As Moses grew older, he stepped into a broader world where many like him were not so fortunate.
“I became an activist because I saw others with albinism live a completely different life from mine,” he explained.
His expression tightening, he adjusted his chair and sat up straight as though to really draw my attention.
He continued: “While I was loved, others were shamed. Bullied. Left to feel less than human. It just didn’t sit well with me and that is when I decided I had to do something,” he said.
Moses underlined that the stigma many people with albinism face – from being ostracised at school to being viewed through the lens of dangerous superstitions – is far from harmless, it puts their lives at risk.
“Children are teased for having low vision. They are told they can’t see far. They are bullied and made to feel unwanted. As a result, some grow up struggling with low self-esteem, battling not just the sun but society itself,” Moses said, adding that “I chose to be their voice. To remind them they are not mistakes. They are not cursed. They have purpose.”
Saving lives
Albinism is a genetic condition marked by a lack of melanin, affecting both skin and eyesight. One of the gravest challenges is exposure to the sun – without melanin, the risk of developing skin cancer is dangerously high.
For this reason, Moses is backing a push for the World Health Organisation (WHO) to include sunscreen on its list of essential medicines for persons living with the condition.
“We need sunscreen like others need insulin. Health is a human right. WHO must add sunscreen to the list of essential medicines. This will save lives,” he said.
Living with purpose
Moses noted that the superstitions surrounding albinism – such as the belief that families with albinos are cursed – are not only deeply saddening but can also devastate lives.
“They say we don’t die – we disappear. They say our bones and teeth are used for rituals. These beliefs have made people with albinism targets,” he said, his voice barely above a whisper.
He paused and then continued: "I have not seen anyone disappear. But I have seen lives taken. Futures stolen.”
This fear, Moses said, casts a long shadow – especially in countries where myths about albinism are still tied to witchcraft and money rituals.
It’s noon, and we must wrap up the interview. Moses – activist, advocate and light-bearer – continues his mission.
Not just for himself, but for every child born with albinism. He carries this mission forward in his soon-to-be-released book: 'Beyond the Skin: Understanding Albinism with Pride and Purpose'.
- [email protected]
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