Real Life

Living with albinism: I love the skin I’m in

Allan Witana sheds light on his often-misunderstood condition

Auckland great-grandfather Allan Witana has a quiet giggle when people ask where he’s from. The 71-year-old speaks fluent te reo and identifies Maori as his native tongue. His parents are Niuean, yet he was born with golden hair, milky-white skin and translucent blue eyes.

“I keep a lot of people guessing, eh, Mum?” says Allan, smiling across at his wife of 48 years, Isabella Witana, 67. “And I don’t mind that one bit.”

Allan has a rare genetic disorder known as albinism, which affects about one in every 17,000 New Zealanders. People with albinism don’t produce enough melanin – the pigment that determines skin, eye and hair colour – and as a result can have hearing and eyesight issues, plus highly sun-sensitive skin.

Although Allan looks strikingly different from his whanau, he shrugs off questions about how albinism has affected him. “Black face, white face – it’s all the same really,” he says.

Allan and Isabella are well known in their community of Mangere in South Auckland. “Some people call us icons,” giggles Isabella.

A singer and guitarist in bands from the ’60s to the ’90s, Allan is best known for playing with the Rising Stars, the resident band at Ellerslie’s Best Western motor inn.

The vision-impaired couple met in their youth at the New Zealand Foundation for the Blind in Parnell. For 46 years, they’ve lived in the same ex-Housing New Zealand home, raising their four children – Neville, 48, Angela, 46, Selina, 45, and Leyton-John, 42 – and many of their 22 grandchildren and three great-grandchildren.

The couple’s home is jam-packed with mementos and family photos jostle for space on the walls. In each portrait, Allan’s is the only fair face.

“Sometimes one of the moko will ask, ‘Why do I have a poppa that’s white?’” he says. “But it is what it is.”

Allan’s parents met on a boat coming out from Niue in the 1940s. He inherited the albinism gene from his father, and he has uncles and brothers who have also been affected. Although none of Allan and Isabella’s children have albinism, some may be carriers.

Allan was seven when his mum died and he was adopted into a Maori family who lived on a farm in Pukekohe, south of Auckland. He says the family tried their best but had no understanding of his condition. “No-one had heard of albinism – they just knew I was a different colour,” he recalls.

Without sunblock, Allan’s sensitive skin burnt and blistered. The nuns at school tried lanolin, which made it worse. His vision was so bad, he could hardly see the blackboard.

“I would get out of my seat, run up to the front of the class, try to read the board and then run back,” Allan recalls. “The teachers thought I was being naughty and the kids threw chalk at me.”

He was sent to a school for the deaf, then another for children with behavioural issues. “The nuns knew there was something wrong, but they didn’t know what,” explains Allan. “In those days, if you were different, you were hidden out of sight.”

Among his Maori-speaking community, he began to be called “kehua”, which means ghost.

Many of Allan’s whanau were raised in the same home he’s lived in for 46 years.

“As a child, I’d walk down the road and all the adults would say, ‘Ko ta mai te kehua,’ or, ‘Here comes the ghost.’”

When Allan was 10, a nurse at school picked up his vision impairment and he was sent to live at the NZ Foundation for the Blind. For the first time, he met other kids with albinism.

“I remember thinking I was in a good place. Brown or white, we were one big family.”

Also at the foundation was Isabella and five of her siblings. She belonged to a big family of 12 children – half of whom had been born with cataracts.

“We didn’t like each other at first, did we, Mum?” asks Allan. “Yeah, we did,” replies Isabella. “It’s always been me and you, Dad.”

The vision-impaired couple married and raised their four children together. Allan didn’t let his eyesight hold him back, playing in bands while working jobs as a cleaner, assembler and handyman.

“We just got on with it, eh, Dad?” says Isabella. And 60 years on from the day Allan first arrived at the Blind Foundation, Aotearoa is a far different place for people with albinism.

Today, Allan is a member of the Albinism Trust, established in 2007. The trust and the Blind Foundation provide support and resources for people with albinism.

As well as vision impairment, a key issue is avoiding sunburn, which can cause irreversible skin damage and cancer. Albinism Trust National Organiser Allen Little explains that although people with albinism stand out in the crowd, the condition is often misunderstood and influenced by old wives’ tales.

He says, “We encourage people to ask questions and get the information they need.”

For Allan, a lifetime of living with albinism has provided a rich tapestry of experiences.

“I stand up to speak Niuean or te reo on the marae and I see people all looking sideways at each other,” he smiles. “There’s nothing wrong with living life with a few surprises”.

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