6 and ½ years on a dung-hill; life in Specialist Disability Accommodation
In this book I propose to include edited versions of posts I have made to On Line Opinion (OLO) (www.onlineopinion.com.au), John Menadue, ProBono, The Conversation, DesignForAll, and my personal blog.
My aim in this book is to affirm vital principles that need to be better understood and implemented if the National Disability Insurance Scheme (NDIS) is going to be of benefit and fulfil its mandate; so that care doesn’t become careless.
What I have to say in this book should be of assistance to people like myself who not only need heightened levels of care, but also encouragement to “keep going”. If we are to maximise the potential we have, we need to grit our teeth (if we still have teeth) and rise to a big challenge even though we face severe deterioration. What I have to say is aimed to encourage people to keep on pushing the case for disability justice!
But what I have to say is also aimed at those providing a service to people with disabilities. I’m wanting to address all who are involved in disability care, whether they are in one-on-one relationships giving care, or whether they are professionals, social workers or those with medical and nursing expertise. My book is also aimed at those managing facilities that look after communities and groups of people. So, I am giving myself a wide focus in this book.
At times readers will say to me “Hang on! That’s a bit over the top!” I apologise if I hurt anyone with what I say, but my aim is not to win a fight, but to present a case.
And my case can be understood by the following points:
1. In this book I want to write about myself as a severely disabled member of this community. I want to tell a story about my goals and about the hurdles I have had to overcome in recent times. I have already written and published about my earlier life. Now I want to write as my strength and sight gets weaker. In recent times I have had to confront further disappointments and I want to share some of those to explain just how crazy life can be with the deterioration of my bodily condition so that readers can better understand. I’m wanting to write to assist those who are keen to ensure that care doesn’t become careless.
2. I am also wanting to write about some negative tendencies I have encountered, and continue to encounter, and which need to be overcome. I have experienced these in the care that is given to support people like myself. I’m aware this might read as if I am simply just whining, and it’s not always easy to explain what seems glaringly obvious to me. There are some things that need to be avoided if care is not going to become careless. Some of these tendencies are-
2a. Stereotyping within the disability sector; this can be enforced by standardized policies.
2b. Treating people with disabilities as ‘customers’; this is a very spurious term, especially concerning the care people with severe disabilities (who have high support needs) ought to receive.
2c. Treating people with slurred speech as if they have a mental deficiency. Adam Vogel (2015) wrote in ‘Speech disorder is an invisible form of disability’: How we sound influences how we are perceived physically, intellectually and morally. For individuals with a speech disorder (e.g., slurred/slow speech, stuttering), those biases are often intensified leading to substantial social impact beyond the speech disorder itself.
3. And so I am giving advice not just to those I know but also to those forming policy, making laws and framing legislation. I am giving advice about the principles that should govern schemes like the NDIS. Disability is not easily lived with let alone overcome. For the NDIS’ success, it will require a greater contribution from all citizens to support all who are directly involved. And this book is my contribution.
Thank you to Bruce Wearne for his empathy and understanding in helping me with this piece. And the ‘thank you’s do not end there. Chrissy, my academic support worker in helping me with editing, reading and writing.