www.theage.com.au

Albinos think it's time the world played fair

The taunts made it difficult to grow up with albinism, especially when so few people understood the realities of her condition. At times, it became so hard to accept, Ms Parker tried to evade questions about her fair hair and milky-white skin, telling people she only had "some parts of albinism" if they insisted on answers.

Now, at 36, the mother of three and specialist rehabilitation doctor is out and proud. As secretary of the Albinism Fellowship of Australia, she is bringing her people together to share the joys and frustrations of their condition, which is still largely misunderstood.

This weekend, about 70 Australians with albinism will attend the fellowship's annual meeting in Melbourne to hear the latest news on medical interventions to help their sight, as well as practical advice on how to look professional in job interviews, for example.

For Ms Parker, the meeting is also an opportunity for her community, especially children, to feel normal and to help them destroy the myths created about them in books and films.

"Hollywood can't seem to get beyond the square they have albinos in," she said. "They either have supernatural powers or are evil villains . . . It means Joe Bloggs walking down the street might only know of Silas from The Da Vinci Code  the evil, red-eyed villain. And even that is very inaccurate because he's a sharp-shooting, gun-toting dude who drives a car, so the perceptions are all wrong. If you gave me a gun, I wouldn't be able to shoot anything!

"We want to get the message out that we're just a variation of normal. We happen to have very fair hair, white skin and are vision impaired, but that's it."

Contrary to public opinion, people with albinism do not have red eyes, but rather light blue and sometimes violet eyes, which are more likely to turn red in photos because of flash photography. Another misconception is that the condition comes with cognitive deficits. Ms Parker thinks this has stemmed from nystagmus  involuntary eye movement that can speed up with stress or sickness for people with albinism.

Albinism is an inherited condition where the body produces less than normal amounts of melanin  a substance that gives skin, hair and eyes colour. About one in 17,000 Australians is born with albinism and about one in 75 carries an albinism gene. If a carrier mates with another, they have a one-in-four chance of a baby with it.

Ms Parker said she hoped the meeting this weekend, humorously titled SPF2011 (Spectacular Platinum Festival), would be a celebration for people who too often feel stigma.

"It can be a life changing experience to meet other people like you," she said. "The first time I sat through one of these meetings, I wept in the back row. It was such a relief."