By Emma Xerri
At only 25, Maya Pinn is paving the way for disability inclusion across the City of Casey, turning her self-described “over-enthusiastic” efforts into a well-deserved Casey Community Award win as the 2024 Young Citizen of the Year.
As a disability inclusion advocate, business owner and single mother to two children, Ms Pinn has taken matters into her own hands, after her now six-year-old son’s diagnosis with rare genetic condition IQSEC2-related disorder inspired her to seek much-needed change in a flawed system.
“My advocacy work came about after I had to advocate for two years to get genetic testing for my son, Lloyd, after I had done every test known to mankind to find out why he had such a severe global developmental delay.
“The average Diagnostic Odyssey for receiving a diagnosis is seven to nine years, and 30 per cent of children with a rare genetic disease pass away before they’re five. So I think it’s so important that these are caught early on.
“If there’s going to be a life-limiting condition, and there’s no cure right now, then how can we improve the quality of life for the child and their families so that they have the best five years?”
Ms Pinn’s advocacy work began in 2019 when she first connected with Syndromes Without a Name (SWAN) while awaiting her son’s diagnosis.
Five years on, she is still devout in her work with the organisation, moving into a paid administration role, while continuing her volunteer work in peer support by providing advice to families, lending an ear for their diagnosis stories and connecting them with research projects.
Her work with SWAN has also seen her become involved with the Community Advisory Group, through which she has advocated against issues like Discrimination Against Genetic Testing in Life Insurance, which stops life insurance companies from increasing your premium or denying you health or life insurance due to genetic tests.
Outside of SWAN, Ms Pinn dedicates some of the remaining hours in her busy week to the Association for Children with a Disability (ACD), volunteering as a community champion and advocating on behalf of the organisation in issues regarding the NDIS, while offering her experience in the creation of training modules for inclusive playgrounds.
“My six-year-old, Lloyd – who has a rare genetic condition, is in a wheelchair, is non-verbal, has a severe intellectual disability, and is PEG-fed now – has completely different needs from my four-year-old, who is neurotypical and can walk, talk and run,” she said.
“So, how do you include them both in the park at the same time?
“And it’s not just my family that I’m providing this sort of feedback for.
“Trying to keep everything as inclusive and accessible as possible not only suits me but the families around me.”
Supporting her two children and continuing to pursue higher education, Ms Pinn also runs an adaptive clothing business, called RareWear, that aims to “help parents lessen the stress for simple daily tasks like getting their kids ready in the morning”.
“A lot of families don’t even know that things can be easier,” she said.
“So I hope to make mine and their lives easier so we have more time for fun and connection.”
And having just celebrated its first birthday, the founding of her clothing business took place while studying a Bachelor of Health Science full time, which she just finished in 2023, and working at her local auto retail store 25 hours a week.
During this time, she also volunteered with the Royal Children’s Hospital Family Advisory Council, and at the Murdoch Children’s Research Institute, where she is now doing her honours in increasing diversity in Australian genomics, with The University of Melbourne.
“I try to do as much as possible,” she explained.
“I’m not good at being bored, or relaxing for that matter, so I’m very strategic in how I plan my days, weeks and months.
“I’m also really lucky to have such a great community around me in terms of my family, with my parents and sister, and also my best friend, work colleagues and, of course, groups like SWAN and ACD, who have always been really supportive, especially when I need disability-specific advice.
“And I have so many calendars, it’s not even funny. I have two on my phone, one on my email, two physical calendars in my kitchen, and I do a weekly one as well.
“But the key for me in balancing everything is passion. When you’re passionate about it, it doesn’t feel like work.”
Hoping to help lighten her mum’s load is four-year-old Elsie, who has taken the busyness of her little life in her stride, and works alongside her mum to make the things that could otherwise be burdensome more fun, naming Lloyd’s medical devices fun things like Peggy and Tricia, and helping with her favourite job of changing the “Peggy pads” twice a day.
While she is still “shocked” by the award, Ms Pinn hopes that her win can help raise greater awareness for her work and for disability inclusion as a whole throughout the City of Casey and beyond.
“I think my win is a great opportunity to really make a big impact on families in the City of Casey predominantly, but also statewide and nationally, by building a community for children like mine.
“And children turn into adults too, so this way we will have people to turn to when they finish school, and around guardianship.
“This is all information that shouldn’t be kept from these families, and I don’t think anyone should ever be alone. I know what it’s like to feel isolated, so I hope to lessen the mental health impact on families and help them find more people like them.
“Because from my standpoint and experience, we can do a lot better with disability inclusion, and it doesn’t have to be hard.”
