Noah Barlow is determined to speak up for young people with disabilities and make sure they are seen and heard. Liam McNally spoke with Moorabool Shire’s remarkable Young Citizen of the Year.
“I feel it is time for everyone to lift our expectations of what we think people with a disability can do, because it’s always more than you think.”
This was 12-year-old Noah Barlow’s call to action as he addressed an audience of community members, councillors, as well as state and federal MPs during his speech accepting the Moorabool Young Citizen of the Year Award on January 26.
Noah said he “can’t even describe” how “awesome it felt to be recognised”.
“But, I feel like we’re just getting started. There’s so much more we can do as a community to make things better for people with disabilities,” he said.
In his speech Noah said he finds himself being “underestimated a lot of the time”, that people “see the wheels and think that I can’t do”.
It doesn’t take much interacting with Noah to know that he is not to be underestimated.
A quick conversation demonstrates more energy, intelligence, and cheek than the majority of 12-year-olds in their first year of high school, along with the self assuredness of someone who has had to “fight for, or find a way to do things differently that most people take for granted”.
Some of his favourite things are Star Wars, Lego and playing junior wheelchair AFL and basketball, but Noah has also grown up with what he called “a whole list of upgrades” – autism, ADHD, dyslexia, Tourette syndrome and “the big one”, Mitochondrial disease.
When he was 7 Noah was diagnosed with Mitochondrial disease complex 1, a rare genetic disorder that robs the body’s cells of energy. The diagnosis came with a life expectancy of just 10 years.
The diagnosis hasn’t prevented the Bacchus Marsh boy from achieving more in his 12 years than most people do in a lifetime.
Noah pours energy into projects that help others. He is the captain of Noah’s Ninja’s, a group of 68 locals, but nationally is 791 ninjas strong, who have raised more than $236,000 for the Mito Foundation through The Bloody Long Walk.
He is the co-founder of Voices Podcast, in which children tell stories for other children in hospital so no child is left without a bedtime story.
He has contributed to a book by television and radio personality Melissa Doyle, 15 Seconds of Brave: The Wisdom of Survivors, and has authored his own children’s book, Beryl the Ninja Chicken.
Noah said that in all his endeavours, he wants to “help other kids like me to know that we can do anything with the right support.”
Noah’s mother, Kat Barlow noticed his altruistic tendencies from a young age.
“Noah was about five years old when he talked to another little kid, a stranger in a waiting room, there having an X Ray,” Ms Barlow remembered.
“She went from being very upset to cruising into the room to take her ‘inside out photos’.
“Having been through so much, he didn’t think twice about helping others and he never has.”
Noah was also instrumental in setting up the first ever junior wheelchair AFL team, which began with a school assignment.
At 10 years old, he and his classmates were assigned to write exposition pieces on why kids should play sports.
Noah decided to write his on why “every child” should be able to play sport.
In his exposition, Noah implored the AFL to set up a junior branch of the Victorian Wheelchair Football League (VWFL) that operates in the same way as Auskick, highlighting that 4.5 per cent, or 211,200 children in Australia have a disability.
“That’s a lot of kids who don’t have the same access to sport as ordinary kids,” he said.
“I wanted to be able to play in a kids’ team, just like my mates do.”
The article was posted on social media where it garnered a great deal of attention, including from Chris Henderson who plays for the Richmond wheelchair team.
Last year, the AFL junior wheelchair league played its first season, in which Noah won the grand final for the Richmond Tigers.
“It was exhilarating,” Noah said, “I loved it.”
Noah was awarded the 2022 Robert-Rose foundation VWFL development medal for his efforts, and was invited to the Brownlow to receive his award.
As resilient as Noah appears he concedes that living with mito “is very hard at times”.
Late last year, Noah suffered his ninth stroke, which damaged his spinal cord, leaving him permanently using a wheelchair he previously only needed periodically.
In the face of setbacks like this, Noah said he “just gets on with [his] life”.
One of Noah’s biggest frustrations though, is living in a world he feels hasn’t been designed with people like him in mind.
Ms Barlow said that in our society people “say a lot without actually saying anything” about people with disabilities.
She gave examples of seeing places without ramps like schools or even the floor of parliament.
“If you don’t build a ramp, there’s an expectation that there’ll be no disabled people in that role,” she said.
Since his award, Noah and his mum have been liaising with council, working towards making it more accessible for everyone.
“They’ve been awesome,” Noah said, “They’ve always had great intentions.”
Moorabool council community strengthening general manager Leigh McCallum said officers from the community development team met with the Barlow family recently to gain feedback on making events, programs, and public spaces more inclusive and accessible for people with disability.
“Noah Barlow is an inspirational young person, and council is keen to look at opportunities for Noah to be involved in our planning for all abilities, particularly in his role as Young Citizen of the Year,” he said.
Noah closed his Young Citizen of the Year speech by stating that “finding another way does make us different but different doesn’t mean we are less.”
“Different just means we have to find our own way and as a community we can do even more to include people with disabilities in the conversation about how we can make sure everyone matters. Nothing about us without us,” he said.
“Thank you to everyone who sees me for who I am, thank you to all those who keep helping
people who are different and awesome. Thank you for this amazing award and I hope to keep working with Moorabool to make things even better for everyone.”
