John McKenna has never let his disability hold him back. If anything, it’s empowered him to be who he is today.
John has Arthrogryposis Multiplex Congenita, which means he was born with twisted limbs and had to undergo many corrective surgeries as a child. He’s spent his whole life in an electric wheelchair.
When he was 18, he wanted independence and freedom – much like most people at that age. So he left his family home.
But because he needed support and help to be independent, so he went into a place that could offer him care, a disability organisation in Armadale.
A few years later, John moved to Bendigo to be with his girlfriend. But when the relationship didn’t work out, he moved into the only place that could offer him care – Bendigo’s hospital for the aged. He was alone in facility that wasn’t quite right for him.
Moving into an aged care facility in Bendigo was hard for John, “being a young person with a disability who’s achieved quite a lot, my first reaction was “going there is a backwards step” and “why me?” and “how come?” but due to circumstances there weren’t a lot of choices.”
But that didn’t stop John, who saw this as a “stepping stone”. He had 24 hour care, but he was also young and wanted to go out. He was allowed to enjoy those liberties – he loved a late night at the pub.
He wasn’t like the other people living there – they were older and at a different place in life to him.
“Aged care wasn’t an environment where you could show your personality or share your dreams.”
“It was a caring environment, and they very much looked after the seniors – but it wasn’t the place for a 22 year old.”
“I had to be very considerate of the needs and wants of the aged”
Though he had some freedom and a lot of care, it was far from where he wanted to be.
John described himself as somewhat of a “novelty” while living in aged care, as he was closer in age with the staff than he was with the resident.
The staff were able to “have that conversation with a younger person” and John cheekily admitted he “loved being that young guy with young nurses around me”.
But he understood the nature of their job, “I had to respect that they weren’t just looking after me.”
“Overall, the staff were very pleasant and worked very hard. But in those days days there were no options for people that required the type of support that I did.”
To be more social and meet more people his age, John joined the Bendigo Lion’s Club.
It was his first Christmas since joining the Club, where his life changed – he met his wife, Robyn.
It wasn’t easy for the couple, they had just started a new relationship and John was still living in the aged care facility.
Things continued to get better for John when he started to receive funding to help pay for his disability supports.
This meant he could have carers visit him in his own home and help him with day-to-day tasks. He could finally leave the aged care facility and move in with Robyn.
John has always looked for innovative way to manage his everyday, something that most people can relate to.
He eventually got an “assist-dog”, a collie named Jimmy, to help break his dependency on carers.
John even learned to use new and different technologies, like a tape recorder to take notes with.
Not only was John becoming less dependent on carers, but this also gave his wife the opportunity to have more independence.
John has always been busy, and has had an extensive working career. This especially helped him when he was living in aged care, “I was lucky to a degree where I was working full-time in a retail environment.”
“I had my own business, selling medical equipment. It was great.”
It was difficult for John to be living in aged care and working full time.
Unlike the other residents, he was young and he was working in retail, “like any young person running a business, you wanted to share the positives and the type of day you had”
“An aged care environment doesn’t give you that opportunity to come in whistling and excited that “I had a great day” because people were dying or sick.”
He’s been involved in a mix of jobs in the Corporate/Government environments as well as the not-for-profit sector.
Much of his work has been connected with disability, focussing on empowerment for people with disabilities and their families.
In more recent times, John has now turned his attention to aged care – and who better than John who has experienced life in aged care first hand to provide the much needed advocacy that the sector needs.