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I live with my partner Sheila in one of CPA’s supported independent living homes and we love it there. It’s a big home, fully accessible and in a really convenient spot close to the beaches for us to enjoy life, we love to go shopping together and watching NRL and the Sydney Swans. And it’s conveniently close to the shops and public transport. The staff help me with getting in and out of bed, personal care, medication, mealtime. Sometimes they support me with outings, however, I go out a lot on my own. Occasionally, I go into the city on my own to see a sporting event with my family.
I was diagnosed with cerebral palsy, GMFCS level 4, when I was a year old. I’ve been part of the CPA community pretty much my whole life. I also work at CPA in the Finance team. Just like any relationship, it’s mostly great as well as sometimes frustrating!
I would advise parents whose child has been diagnosed with CP to find the right therapies for your child and get the most appropriate equipment for them. I say this because I‘ve done the full gamut of physiotherapy, occupational therapy and speech pathology. I also use assistive tech to maintain my independence and help me communicate- such as the trackball on the computer, cochlear through mobile phone, a customised wheelchair, iPad, and an air mattress. What would have been really useful to have is some kind of device to help me talk to people on the phone. Maybe somebody from Remarkable (CPA’s disability tech startup) will invent that!
A common misconception is if you’re a wheelchair user you’re incapable of living a full, normal life. But that’s not true. Also, people tend to focus on what you can’t do, rather than what you can do. When people ask me why I am in a chair I tell them I was born disabled and can’t walk very well. Neither can I transfer on my own, hear well or feed myself. But, I CAN use my hand to operate my controls and hold the phone. I CAN work on the computer very well and am very good with numbers, hence my job in Finance at CPA. And I CAN also be happy and live a great life. I’d describe myself as being easy going, cheeky, and social. I love being around people.
Keen to find out more about cerebral palsy? Head to the “What is cerebral palsy” web page for more information and to watch the video explainer series.
