When I was 11 years old I was diagnosed with a degenerative condition. My parents were told there were no treatments available and an optimistic life expectancy was 20 years of age. Last year, I exceeded those early expectations by celebrating my 30th birthday. It turned out that the doctor who gave me this bleak prognosis, didn’t actually know much about my neurological condition. With no medical advice being offered, my family and friends really stepped up to help me navigate life with a disability. Finding out about accessibility issues in a wheelchair, and including me when I felt so isolated. As my condition and my needs progressed, I lost so many abilities. I thought it would stop when I couldn’t walk anymore, but then I discovered that I needed help getting into bed. When I couldn’t dress myself anymore unaided, my support system made me feel like I still mattered. This was important, especially as I reached the stage of being classified as someone with a ‘high needs disability’. A term applied to someone needing help with most of their physical activities.When you need help with daily activities, like showering, eating, and dressing, you often find yourself in undignified situations without privacy. I am one of the lucky ones in Australia, because I avoided aged care homes in my 20’s. Somewhere that a few of my friends wound up. Young people living in aged-care homes, without choice or independence in this country is pretty oppressive for a first world country.
Jamie-Lee with plants behind her