The hunt is on to find WA’s super-power babies.
Photographer Rachel Callander, who lost her two-year-old daughter Evie to a rare chromosomal condition in 2010, is searching for local subjects for a book featuring positive images of babies and toddlers living with disability.
It follows a successful run with her Super Power Baby Project book in her native New Zealand.
Ms Callander said negative language around disability was crushing hope for parents already struggling with bleak outlooks for their children.
She now educates medical professionals globally, with a paper she produced titled Effective Communication in Healthcare.
“The phrase used with Evie was that she was ‘incompatible with life’ … it’s brutal,” she said ahead of Monday’s International Day of People with Disability.
“Then they said if she did survive, which was highly unlikely, there would be severe mental retardation and there were congenital defects, skeletal abnormalities and a whole bunch of other things.
“There is so much fear and so much uncertainty, trauma and shock and everything seems to be ‘dis, dis, dis’.
“It’s like being pulled back into a dark place when you’ve just crawled out.
“It takes time to first come to grips with it and then establish what life actually can be. But when you’re constantly battling these words, it can take a lot longer and you have to fight that …What I’m trying to teach health professionals is that there is a better way of saying it.”
Ms Callander will team with Perth Children’s Hospital-based Kalparrin, WA’s biggest community of families caring for children with disability and additional needs, to produce her book in Perth and mark the centre’s 30th anniversary.
National Disability Services WA manager Julie Waylen said the power of language and Ms Callander’s work was more pertinent than ever given the rollout of the National Disability Insurance Scheme.
“So often people with disability find themselves required to focus on what they can’t do in order to get the support they need,” Ms Waylen said. “Words and language can be very powerful and can have a significant impact, so a balance is needed.
“ There are also lessons for the broader community in the way we view disability and the importance of focusing on the achievements and contributions people with disability make.”