Disabled bodies, stereotypes, and gaps in the system

It has been so long since I have written, that I barely know where to start. So I may as well start with why it’s been so long.

April 6th 2021 was the one year anniversary of the death of Ann Marie Smith, a woman with a disability who died as the result of an absolute failure of a system that was meant to ensure her care and safety. Ann Marie Smith died in hospital due to malnutrition and sepsis as the result of being left by her carer to sit in a cane chair for over a year. As the news headlines unfolded, everyone questioned how could this happen today? 1 year on from her death, ‘Purple Orange’ shared a podcast interview with a woman whose story shows how easily it can happen. You can listen to it here.

As a woman with a disability myself, the story of Ann Marie Smith’s death hit me hard, as I also rely on disability services. I’ve been quiet about the anniversary of Ann Marie Smith’s death up until now, because of recent events which really highlighted how vulnerable people with disabilities are, or at least can be, and how easy it can be to become another statistic.

I’m a wheelchair user, and at the time of April 6th, I was seeking treatment for some weakness in my left arm. The joys of having a disabled body. This investigation led to further investigations of a possible fracture in the arm (which was thankfully ruled out), but this turned into a discussion about potentially needing to use a power chair in future. While the idea of a power chair may seem awesome to some, it was a path I was not wanting to go down. I rely on my strength for my powerlifting and therefore want to keep my upper body strong and active with my manual wheelchair. In the end, my Occupational Therapist and I agreed to test one out just to see what I was looking at down the track if I needed one. Although I wanted to acknowledge the anniversary of Ann Marie mith’s

death, I felt it was not the right time as my brain was in the middle of dealing with the frustrations of my disabled body.

The time to explore the powerchair option unfortunately came around much sooner than I expected, which only exacerbated things. 5 weeks ago I found myself in emergency calling my OT to organise a rental power chair thanks to a broken leg, fractured in multiple places as the result of an accident with my wheelchair, falling out and it landing on my leg on the way to a Sunday brunch with my partner. While I won’t bore you with all the details of the past 5 weeks, I will point out a couple of the observations I made, highlighting how far we have to go in society.

1. The NDIS does not know how to deal with disabled patients in the private health system, highlighting the stereotype that people with disabilities do not have private health insurance.
2. The Transitional Care Program is not an appropriate option for people with disabilities when the only rehabilitation options exist within nursing homes. We need rehabilitation facilities built specifically for us because disability and aged care are not the same thing, nor do we have the same needs as older Australians. It is also not acceptable to expect a young adult to be in an aged care setting where there is not appropriate mental stimulation. Without an appropriate environment, recovery can be negatively impacted.
3. Without the ability to advocate for oneself or to have a network of people around you who can advocate for you, it is very easy to become another statistic.

It’s one thing to read about the things faced by people with disabilities due to an inadequate and broken system which fails to see people with disabilities as anything other than a bureaucratic category, but it’s another to actually live it. This experience has highlighted to me how easy it is to become a vulnerable person. People with disabilities generally do not like to be lumped into the vulnerable category as a whole because it conjures negative stereotypes, but in reality, our position as vulnerable people is something that can happen very quickly. One of the ways to overcome this is for disability inclusion to become the responsibility of all of society,