Feature
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Viewing ourselves - are the media blind?
"I want people not to be nervous of blindness," says Camille Guy, "so the more images of us that are shown in the media, the better."
Camille was working as journalist before she lost her sight and is only too well aware of how the media typically portray blindness. "We're either the tragic figure going blind, the plucky person who's coping, the miracle cure - they love that one - or the extraordinary inspiration. I want to be presented as being like anybody else."
Camille acknowledges that the dilemma is the media are generally not interested in the ordinary and that being "different" gives her opportunities to raise blindness awareness.
She took part in an Inside-Out programme recently with two other disabled writers. Screened at 9.30am on Sunday mornings, how many people were out of bed and watching?
One of the show's presenters, Minnie Baragwanath, agrees that disability is rarely mainstreamed but says nonetheless that the programme is a good thing, that it gives people with disabilities the opportunity to give their own perspectives. "Other parts of the world don't have a dedicated programme ... Not everything has to be integrated. Celebration of uniqueness is a positive thing, in balance with being ordinary. It's about having the choice to mix in both worlds - disability and mainstream."
Camille points to the value of mainstreaming blindness. "People often don't know how to relate to someone who's blind," she says. "They avoid me. If a blind character, say, was a regular on Shortland Street, then everyone would feel they almost knew someone who was blind."
Being represented or participating in a film or TV programme is only part of the equation. Actually gaining control of and directing the medium is where empowerment lies.
Anthony Cook is a former employee of the Foundation who has gone on to research aspects of visual representation of blind people. (See more on page 19.) He comments, "When Māori get hold of a camera and make films about themselves, those films have an entirely different flavour than ones made by Pakeha. Because film and TV are such visual mediums it's been difficult for blind people to represent themselves."
He agrees with Camille that representations tend to focus on the individual who, he says, is often rescued from the depths of despair through the intervention of a kindly, sighted person.
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"When the breakthrough is caused by a sighted person's interactions it takes the responsibility away from society to remove the societal barriers to equality," says Anthony. "It absolves us sighted people of our responsibilities."
Stereotypes are also created when people are depicted solely as their medical condition. This happens particularly when that condition is a highly visible one.
Last month, a documentary on albinism was screened on TV3's Inside New Zealand. Its producer was inspired by the work of a New York fashion photographer who spent years creating images of human perfection, and then gave it all up. Rick Guidotti was in hot demand by companies such as Revlon and Yves St Laurent. His life changed one day through a chance encounter with a 15 year-old African-American at a Manhattan bus stop. She had albinism. He stopped to ask himself if there was a definition of beauty beyond the vacuous perfection of supermodels.
"As a fashion photographer I was always told who was beautiful. Beauty is defined by fashion editors", he says.
Rick's first photos of women with albinism, "Redefining Beauty", appeared in Life Magazine in 1997.
It had been a challenge to convince the national US albinism support group, NOAH, to support his aims. "Exploitation was a big issue," Rick says, "so it had to be a collaboration."
Since then, the not-for-profit Positive Exposure project, his full-time commitment to changing ignorance and celebrating diversity, has grown by leaps and bounds. He travels the world creating a network of information, stories and energy, and says he has yet to find a country in which albinism does not occur.
Albinism is a genetic condition that reduces or eliminates pigmentation in the skin, hair and eyes. It is frequently associated with partial sight loss. The worldwide incidence of albinism is 1:20,000, (but in Panama it is 1:25).
Rick's gift of being able to reveal people to themselves in their unlimited potential is a powerful antidote to demoralising social images. In his photographs many subjects see themselves for the first time as someone beautiful, as someone - not as a medical condition, or a freak of nature.
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Alan Little invited Rick to present his stunning work at the Foundation in Auckland while Rick was here in April participating in the documentary. Through this he aimed to start the first albinism support group in this country. About 50 people turned up to see vibrant images of others with albinism ranging from 3 months to 96 years, from continents as diverse as Africa, Asia and the South Pacific.
"The only limitations are the ones you accept. It's all our responsibilities to change stigmas," Rick says. "People come first, then their condition. That's the stigma we're challenging."
After the presentation Rick photographed several people who attended, some of whom took part in the TV3 documentary.
Minnie Baragwanath strongly believes that charities such as the Foundation have a huge responsibility in their media campaigns to portray positive images, not messages of dependence and pity. "How is that advancing anyone's status in the community?" She points to the "Like Minds" mental health campaign as an excellent model in this country of breaking down barriers. The campaign showed talented, respected New Zealanders telling their stories of mental health problems.
Alongside this, she sees a need for the media to balance its focus on the cult of the individual with more in-depth reporting, exploring what disability is. In her role as disability officer for Auckland City Council she says, "We make sure that every communication that goes out to the public has a strong social model context, that gives a greater understanding of what factors, for instance in the environment, either create disability or remove those barriers."
Minnie completed a Communications degree at AUT and says that disability awareness was not covered in the training. "It should have been. We covered so many other areas."
Such training would provide a greater understanding of the finer distinctions of blindness and vision-impairment.
To contact the Albinism Trust, ph: 06 368 8484 or email: albinism@inspire.net.nz