Transcript
Fiji is undoubtedly one of the most popular tourist destinations in the Pacific, a place many travel to, just to enjoy the sun. But what many tourists don't realise is that a significant number of locals are trying to avoid it. The worldwide average of countries who have people with albinism is 1 in 17,000. In Fiji, the rate is 1 in 700. This young girl singing with her family is Sisi Qalulu, one of four families in the film who share their experience about what life is like for them. Her parents Edward and Lavenia have four children, two of whom have albinism. Dr Margot Whitfeld is an Australian dermatologist who has been helping to raise awareness of albinism in Fiji.
"It's not known why albinism is quite so high in Fiji. One of the possible theories are that if you livin on an island community for example of 3,000 and even if your family chooses not to marry someone in the immediate family it's possible that five or six generations ago, you may or may not be marrying or partnering with somebody from the same original gene pool as yourself."
Until recently, the huge challenges people with albinism faced in Fiji remained largely hidden. Last year, Dr Whitfeld organised the first Fiji Albinism Awareness Symposium to raise awareness of the genetic disorder. Many families living with albinism attended the Symposium alongside director Christine Nestel who said she had no idea how prevalent it was in Fiji, until then.
"You know, so many Australians go to Fiji for holidays. But when I mentioned it to friends here, you know, people that have been to Fiji, they were just amazed when I said 'Did you realise that in Fiji they have one of the highest rates of albinism in the world?' and they were like 'really?'"
She created the documentary to raise awareness of albinism and to give a voice to some of the families.
"I thought it would be great just to make a short documentary, so that people - you know the families of people with albinism and the people with albinism themselves, they could tell their own stories. That was the idea, so we could see it through their eyes."
The film highlights the difficulties of living with albinism, in a country which knows very little about it.
"Each time was the feeling of difference and suffering from that because the children with albinism are going to school, they've got white skin so therefore they're different. And well in some cases they get bullied but generally they just feel very different. And it's very difficult for people in that situation," said Christine Nestel
"My name is Esala Eseru, I am 14 years of age. At high school it's very hard blending in with other students. Going with other students that are not like me...different colour than me. No I don't catch the bus. Because every time when I go in the bus, as soon as I enter people start looking at me. It makes me feel very, sometimes sad and angry, but I'm used to it."
People with albinism also face challenges in vision and risks to skin damage. They experience reduced sharpness and increased sensitivity to light. Many of the students at Fiji's School for the Blind have albinism and hope to break the ongoing cycle of people with albinism in Fiji struggling in its education system.
"When these people were at school, when they were younger, is that they didn't do well at school because they couldn't see. You know, they couldn't see the blackboard. And because they weren't getting a good education they were ending up having to work. You know, working outside in the fields."
Long-term sun exposure greatly increases the risk of skin cancers like melanoma. Yet Ms Nestel says families struggled with the cost of sunscreen for their children.
"They can't afford sunscreen. I have to admit I was sort of horrified when they said it. And then I had later just went into a few pharmacies in Suva and it was so expensive, Sunscreen. It was like more expensive than here in Australia."
Ms Nestel says there is strong concern among families around how their children with albinism will have access to good healthcare and education. She hopes the film will help gather more support in Fiji for those with albinism.
