August 6, 2021

Welcome to my crazy life

Grab yourself a drink and get settled in. This is the wildness that is my life. Even when I'm trying to chill, something always happens to me. Through these stories, I hope to give you some insight into my world as a person with a complex disability. I'll be sharing stories of my life and experiences here openly and transparently.

Hey, I'm Jono, and I have Cerebral Palsy. I use a motorised wheelchair for mobility and a tablet for communication. Although I have a disability, I think I'm just an ordinary guy, despite society trying to convince me I'm not.

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Image description: Close up image of Jono smiling at the camera.

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The last five years have taught me you must fight for everything you deserve in this life. It is not always an easy battle to gain independence, especially for someone with a disability. I have gone through the experience of trying to gain control of my world.

The road to taking control of my own life has been a long one, yet I'm still looking for ways to gain more independence each day. I know that I will never stop. I've just moved into the city, which may just be my most significant step towards independence yet.

Moving out of home was the biggest risk I've ever taken, but it was also the best decision I've ever made. I was prepared for it to be a disaster, but if I hadn't tried, then I wouldn't be here. My family was concerned about me living independently and tried to convince me to stay at home. Their intentions were pure, but I needed to put my desires first, and I'm glad I did.

Taking control of my own life has inevitably led me into interesting situations, to say the least. I found myself caught in a love triangle, which didn't end well at all. Everyone around me could see the writing on the wall. Although they didn't intervene, they were there for me when it all came crumbling down. It took me three months to get over it, but I got to know myself and understand relationships on a deeper level. I personally learn the most when I fail or when things don't go according to plan.

A couple of years ago, after hiring new support workers, I realised the previous support I received wasn't necessarily what I wanted or deserved. I had never engaged with support workers that understood and provided a full spectrum of support, not just physical assistance.

Up until then, I thought I was receiving the proper support when I wasn't. The day to day requirements were being met. Still, I underestimated how much support I needed to achieve my goals and ambitions. My new workers actively listened, showed interest and were proactive in helping me to achieve what I wanted to do.

Image description: Jono and a support worker at the football. The grand stands are behind them.

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This realisation changed my hiring process moving forward. With this new mindset, I've been more successful in achieving my goals. I've recently done a lot more public speaking, and with the assistance of my support workers, my presentations have improved. We work collaboratively and discuss areas of improvement in an open and honest space.

I hope this has given you some insight and maybe a laugh or two. This is just the tip of the iceberg. Going forward, I'll be releasing weekly blogs. I used to post regularly but have been on a bit of a hiatus (that's changing!). Feel free to have a read of the others while I get more stories ready for you.

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Blog: The Perfect Home: The Journey and the destination. Image description: Jono outside his apartment building next to a tall brick wall. The brick wall has MQ and the words Melbourne Quarter on it. Over the top of the photo is the title " The Perfect Home: The Journey and the destination".
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