Raising awareness of life with disability was a driving force behind Cristina Rodert putting pen to paper and sharing her family’s story as part of a new book The Eighteen Point Five – in particular, that of son James who now lives in supported accommodation at Minda.
“I ran for the state election in 2018 for the Dignity Party, which advocates for people with disability,” Cristina says. “One of the other candidates John Duthie is the brains behind all this, he asked if anyone was interested in contributing to writing a book, sharing stories about our lives living with disability.”
Titled after the percentage of Australian’s who live with disability, John was inspired to develop the project following a spinal cord injury when a tree fell on him while attending his children’s sports day.
After reading countless memoirs of famous people who live with disability he wanted to share the stories of everyday Australians and their families.
Cristina, whose son James is non-verbal and has both Down syndrome and autism, joined John as one of 25 chapters in the book, a process she says was both rewarding and challenging.
It was a good process because we were able to reflect on our experience since James was born, we looked back and had to say, ‘Wow, James has come such a long way’.
“Coming from a non-English speaking background the difficulty for me was having to express it myself in English, but it was an effort by the entire family, my husband (Kym) helped in conceptualising everything and my daughter (Hannah) helped as well.
“It was a good process because we were able to reflect on our experience since James was born, we looked back and had to say, ‘Wow, James has come such a long way’.”
Cristina says it’s important to share the stories of people like those in the book, to create awareness and challenge people’s thinking.
“Some people don’t understand the life that we’re going through,” she says. “Some people in the community expect everyone to behave in a certain way, but they may not understand that we’re all different, we all have our own personalities and individual characteristics just like James.”
In the book, Cristina writes of the heart-breaking and difficult family decision to have James start spending time in respite accommodation from the age of 12 and then full-time in Minda Housing’s supported accommodation from 15, but says it has made all the difference.
“I am always grateful that James is cared for at Minda because, to us, Minda is his second family. Minda is a part of our family.
“When James started going to Minda he was still in nappies, and it took until he was 15 for Minda staff to get him toilet trained through a lot of hard work.
“James used to eat a limited range of food, but seeing other kids and what they were eating he learnt to eat a lot more variety.
“He is very affectionate towards his Minda support staff, playing with them, hugging them. We will always be grateful Minda is part of his life.”
Visit eighteenpointfive.com.au for more information and to find out how you can order your copy.
Cristina Rodert with her daughter Hannah, husband Kym and son James.