When asked to describe her ten-year-old son, NAB’s Kristy Pinkerton describes a happy, fun and playful person.
“James is very funny and cheeky, and he has an amazing sense of humour,” Kristy said.
“He is very motivated and not afraid to give everything a go – keeping up with his friends on the footy field at school. He can be very stubborn, which is the flipside of being very motivated and he’s growing into quite a good little advocate for himself.”
James has cerebral palsy (CP), a physical disability that affects a person’s movement and posture for life.
Kristy describes cerebral palsy as a condition “where the signals of the brain don’t always land the way they’re intended to.”
It can cause difficulties with muscles and movement, but present differently in different people.
“James has quadriplegic cerebral palsy where all four of his limbs and trunk are affected. It means he has difficulty moving and tightness in some of his muscles,” Kristy said.
“He uses a wheelchair and other mobility devices to help him get around. We use whatever works for him. It’s not important how he gets places, just that he can participate when he gets there. James’ fine motor skills are also affected, so it takes him a bit longer to get his words out, and he uses a computer to write.”
Kristy said that as a parent, it has been a steep learning curve.
“I didn’t have a lot of experience with disability before James was born,” she said.
“James is the closest I’ve been to the experience of a person living with disability. It’s great to understand how he navigates the world, what things make it easier for him and what makes things more difficult for him to participate in activities.”
Every year Kristy participates in STEPtember – a fundraising challenge encouraging Australians to reach 10,000 steps per day during the month of September – all while raising funds to support people living with CP across Australia.
“STEPtember is a great platform to raise awareness of people living with CP and from a wellness perspective it’s a great reminder to get up and get moving!”
“A bit of friendly banter and competition in the office can be good for everyone,” Kristy said.
Beyond the month of September, Kristy said there are many things we can do in our day-to-day lives to help create a more inclusive society for people living with disability.
“From a work perspective we can all try and make sure accessibility is in the forefront of our minds – whatever we do, whether designing a new product or SharePoint site for our teams,” Kristy said.
“If I think about what makes the world better for James, it’s being willing to listen and learn and to ask him questions about his disability. All disabilities are different – there is no one size fits all box – so what’s required to support James and make things accessible to him might be different for someone else.”
Kristy said people always appreciate others taking the time to ask questions and get to know them.
“Most of the people I know with a disability have a pretty thick skin! They appreciate people who take the time to talk to them and see past the disability.”
Mostly, Kristy is proud of James’ perseverance and the young man he is becoming.
“Every milestone James has hit has been better than the likely prognosis we were given when he was born,” Kristy said.
“He’s an amazing little boy and he just keeps persisting until he achieves something. I’ve certainly learned quite a bit of resilience and persistence from him.”
Every 20 hours, an Australian child is diagnosed with cerebral palsy. There is no known cure. To learn more visit the STEPtember website.
