The International Day of People with Disability was 3 December. Andrew Hilton writes how his life has been touched by courageous close family who lived with life-challenging conditions.
Long and personal rant follows. Apologies in advance. A great day to celebrate success. But also a day to get angry. And make changes.
I grew up with two amazing aunties (twins) who each suffered a severe form of osteogenesis imperfecta (or brittle bone disease). I say suffered, because it was horrible for them.
The disease defined their lives and their opportunities. Growing up poor in Fiji, they didn’t have access to the medical care and early interventions that would have given them independence.
My dad had a serious brain injury as a young man – transforming his capabilities and his personality. While he received a good deal of medical attention at the time of his accident, he had minimal support for most of his life – occasional neurologist appointments, but no support for his behavioural or mental health challenges.
We fix people when they are broken, we do rehab. But we need to do more to help people live their best lives. Which is harder, and more expensive.
This is why we need an accessible NDIS. This is why we need support services. This is why we need investment in complex care. This is why we need free, accessible and stigma-free mental health support services. This is why we need a disability support pension that helps people live independently and with dignity.
This is why workplaces need to be truly welcoming, beyond making accommodations. I’m extremely grateful for the support I received in my darker days, allowing me to be where I needed to be, to give support and to grieve without worrying about work.
PS: Please follow the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability https://lnkd.in/geaT7XUw
But don’t think this is just about bad people doing bad things. We have under-funded, under-regulated and neglected social infrastructure.
A bad system will beat a good person every time.
A good system is resilient – it handles mistakes, it notices when people do wrong. Any root cause analysis that says “human error” is wrong. Let’s do better.