The think-tank, Price Waterhouse Coopers, has released a paper called Disability Expectations,: Investing in a Better Life, a Stronger Australia. It rightly points out that, for the government’s proposed National Disability Insurance Scheme to work, there needs to be an holistic change in the way people with disabilities, their families and carers are seen and supported.
As Governor-General, Ms Quentin Bryce points out in the forward, “The paper highlights the need for a cultural shift in attitudes towards Australians living with a disability; from passive empathy and understanding to actively encouraging and championing a batter quality of life”.
The question must be asked, will such a shift create a culture that is toxic to the idea that euthanasia or assisted suicide are viable alternatives to struggling to cope, especially in a context of facilitating increased individual rights?
A philosophy of normalisation, arising in the 1970’s led to people with disabilities coming out of institutions and being made aware of their rights. Independence became the buzz-word, but this has in fact led to greater isolation. So in the 1980s there was a push to end social injustice and discrimination against people with disabilities and move towards social inclusion and autonomy. We were seen as having the same rights as anyone else, but this belief has let us down.
We find if very difficult, if not impossible, to participate in life outside our homes or other accommodation, and only a fifth of us have support needs for basic self-care, mobility or accommodation met.
We have become experts at waiting – patience is our prevailing virtue – as therapy, equipment like wheelchairs and, especially, supported accommodation, take up to ten years to arrive.
Ageing carers, most often our parents, can’t wait that long to see their childrens’ or other family members’ needs met. They believe allowing others to help us is tantamount to abandonment.
All this is a toxic mix of factors meaning that offers of easy solutions via euthanasia and assisted suicide may be taken up, especially in the context of increased individual rights.
So the paper examines in detail the cultural change that needs to occur, to make introducing the Federal Government’s proposed National Disability Insurance Scheme (NDIS) viable. It is not merely about funding, although this is crucial, but also, more crucially, about attitudes. Unfortunately, these cannot be legislated for, and no amount of public relations campaigns will authentically cause a change in thinking. Only when people with disabilities are more visible, everywhere in Australian society, will our thinking start be more inclusive and accepting.
One goal of the NDIS is to allow people with disabilities greater choice of services, with timely information based on evidence. But the Scheme will fail if one that information were to be about the state-condoned “choice” of euthanasia or assisted suicide. As the paper states, another result of poor information provision might be that people with disabilities revert to choosing already familiar services, perpetuating the current atmosphere of hopelessness that leads to the call for death as release.
The paper includes vignettes from individual’s lives to highlight the current situation and demonstrate how an NDIS might lead to change for the good. They should serve as encouragement for for voices to be heard. They tell of people’s expectations, self-belief, desires and dreams, and how the current culture fails to let them be realised of fulfilled.
Recognition of the importance of “dreaming” and having a life vision is a great aspect of this paper, and it proposes ways of facilitating people to let their dreams be heard.
Resilience and problem solving are qualities of people with disabilities that are seen as capable of being nurtured and related to others. These are not only about finding and testing various solutions to life’s problems, but also about discovering unique ways of approaching challenges, identifying and getting information, and thus acquiring wisdom.
When our unique talents, like these, are recognised, and we are empowered to hand them on to others, who gratefully accept them, then we will be viewed as a crucial human resource of skills, not people that can be easily discarded. If the introduction of the NDIS facilitates this cultural change, it will be a brilliant thing indeed.
Much more could be written about this paper – I commend it to you and hope that readers will comment bring their own experiences to shed light on what needs to be done to help the NDIS a success. Implementation will be too slow in the eyes of some, but in others’ it will be seen as indicating the care taken to get the new system right.
I only hope that, for all its promise, the NDIS does bring about a culture in which fewer Australians might bet tempted to choose death through euthanasia or assisted suicide, should it be offered them.