Escape from the Country
Hi, I’m Jack Wason, I’m 19, I have Duchenne Muscular Dystrophy and grew up on a farm in central NSW where I lived with my parents and my younger sister.
All my schooling was completed at the local central school which I caught the bus to everyday. I graduated high school in 2019. My experiences with living in a regional area with a disability were extremely positive, the support I had received from my family, friends and teacher’s aide ensured that I could achieve all I wanted in life.
Growing up with MD honestly seemed very normal, all my friends included me in everything they did. They knew me before I needed a power chair and they adapted to it with me and always helped me when I needed it. The best thing I could do was to focus on what I could do, not what I couldn’t do, and this all helped me to stay positive and ensure that I had a great time growing up.
I have since moved to Wollongong and am living at Kooloobong Village on campus accommodation at the University of Wollongong. I am studying Computer Science which is something that I am very passionate about. I live by myself now with a whole team of support workers to assist me with personal care, cooking and daily living activities.
My interests and passions are; researching anything to do with technology, watching sport, playing computer games and hanging out with my family and friends. I have developed an interest in assistive technology and will look to use my knowledge to make more developments in this area.
I was completely set on studying Computer Science at university when I left school, as I was very interested in coding and computer programming. So far, my experiences in my studies have showed me I made a great choice and I am finding computer science very enjoyable.
I have been a “tech head” for as long as I can remember. I have built my own desktop computer and a GameBoy that operates via a Raspberry Pi and I hope to complete more projects like these in the future. In year 11 and 12 at high school I attended work placement at Appiwork in Bathurst where they are developing “Everywhere Venues” where venues can be listed and rated by how accessible they are to people with a disability. This was extremely eye opening as it showed me what a future workplace might be like.
I am now in the second semester of my first year. Due to Covid-19, study moved online. After only 5 weeks at Uni, I moved back home to the farm to study. When second semester was starting and the Covid-19 cases had mostly disappeared in the Illawarra area, I decided (for my sanity) that I would move back as I wasn’t able to see many people other than my family out on the farm. I had also had a taste of independence and was keen to get back to it and complete the second semester online from there.
The main service I use to manage my care is Mable. Mable is a platform where the person wanting care can list a job request. The support workers who are signed up to it can view the job and request to meet, and then join the team to provide support and care. As for equipment issues, I can contact the local medical equipment place, where I hire my equipment from. Since moving to Wollongong, I have started taking more responsibility for my specialist appointments at the Prince of Wales Hospital, which I now attend independently with a support worker.
My move all became a reality after my mum put up a mercy call of sorts on a NDIS Facebook page and a support coordinator from Wollongong replied and said he would be interested to meet us and to take on the challenge. From then we met him and discussed the whole idea and what was wanted to be achieved.
He utilised Mable to find the support workers for personal care and daily support. After finding suitable candidates he got me to decide who I wanted to support me. For the overnight care that I sometimes need, Mum and I found other people who are attending uni in Wollongong (either living at Kooloobong or living nearby and they can stay the night in my room). I have managed the move very well, as all the support has worked out. The staff at Kooloobong village have been extremely accommodating and they have fitted the doors with remote opening so I can access my room independently.
Having a scribe for my HSC exams was a challenge, especially for maths as I hadn’t had a whole lot of experience having one. It is a bit strange having to tell someone else all the equations and solutions! I overcame this by having weekly practice in class with my scribe in the lead up to the official HSC exams. The school was also able to organise a scribe who had some idea about the equations and terminology I was going to be using in the maths exam. Both combined to give me an excellent experience with having a scribe for a maths exam.
In 5 years’ time I plan to have had a few years experience in the computer science field and will be looking to build my own company that specialises in creating assistive technology applications that can help people with disabilities in rural areas to live their best life. I think who better to do this than somebody who has experienced it.
If I only had one thing that I could say to other young people with neuromuscular conditions it would be, focus on what you can do, not what you can’t do, then you don’t get bogged down with feeling like you’re missing out on life. Look to the now and the future, try not to worry about what you were once able to do in the past. Work hard towards your life goals and dreams and take advice from others in your position, although everybody’s experiences are different. Ensure that you get all the support you need, because it is out there, and you should be taking every chance to make things easier for you to complete.
One life hack I can share would be use a transfer band and board until you can’t, as I found it so much easier than using a hoist.
Thanks for reading my story, I hope that I can inspire other young people with MD to work towards their dreams. You CAN achieve them and go higher.
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