Sharing the real stories of people with disability

23 November 2015

She doesn't like being called 'an inspiration', but it's hard not to be impressed by the determination of Jo Ragen who has been nominated as a finalist in the 2015 National Disability Awards.

Image: Department of Social Services 

A Research Associate in the Faculty of Health Sciences, Jo is recognised for her contribution to improving the lives of people with disability through founding ‘Wishbone Day’, an international community awareness effort for people with Osteogenesis Imperfecta (OI).

“The story around osteogenesis imperfecta or brittle bone hadn’t changed since I was diagnosed as a child and that really annoyed me,” said Jo who teaches and researches at the University of Sydney.

“Parents were still being told doom and gloom and that their children would never have the opportunities others do. The narrative needed to change and that’s where Wishbone day came from.”

“I’ve studied, had relationships, play sports and am now pursuing a research career and I wanted people to know my story and all of the other very normal and extraordinary things people living with this condition are doing on a daily basis.”

Launched in 2010, Wishbone Day is celebrated annually on the 6 May in 90 countries across the globe under the motto ‘Awareness makes a difference’. The focus is on people sharing their own personal experiences.

“Now when parents google OI they are greeted by a whole community of amazing people sharing their stories and getting on board with what is possible for people with disability.”

“I’m most inspired by the impact this has had in developing countries like Pakistan where parents are standing up and arguing that their children should be at school just like everyone else.”

Jo credits her study and background in community development, allied health and education for the skills needed to start up the initiative. She is currently completing her PhD at the University of Sydney and is an investigator on a number of research projects including the Sydney Playground Project, exploring the benefits and restrictions to play for children with disability.

Acting Dean of the Faculty of Health Sciences, Professor Michelle Lincoln said the University was proud of Jo’s achievements.

“This nomination is evidence of the great work Jo has been doing in the background for some time. We are really proud of her work on this front and also value the experience and perspectives she brings to our teaching and research,” she said.

The 2015 National Disability Award winners will be announced at a ceremony on Wednesday, 25 November at Parliament House in Canberra.