When I read that the idea of people with disability being supported to live an ordinary life is central to the work of the NDIS I feel an overwhelming sense of sadness at the mediocrity of it. I see it as a perpetuation of the “soft bigotry of low expectations”. I read recently “low expectations are one of the most subtle yet devastatingly effective forms of sabotage we can do to others and ourselves. Low expectations often masquerade as kindness yet they are the cruelest cuts because they deny an individual their opportunity for greatness.” Did we fight all these years for individualized funding and self-direction so that people with a disability could aspire to an ordinary life? Or did we hope that NDIS might provide the safety net of ordinariness so that people could aspire to greatness?
No doubt that people with a disability and their families have been marginalized as far back into history as we can see and as recently as now. A significant proportion of people with a disability continue to live in poverty, are unable to secure meaningful employment despite being willing and qualified, live in inappropriate housing such as aged care facilities and are isolated from their communities. But surely the aim to live an ordinary life should define the lowest acceptable benchmark.
I’m fortunate in the work I do to continually enjoy the company of people who identify as having a disability or have loved ones with a disability and are actively engaged in defining and creating a better world for everyone. People who are living extraordinary lives not only in-spite of but because of their lived experience with disability.
One of the significant changes to come about as a result of NDIS is an emphasis on capacity building. Overtime this means providers will be required to differentiate themselves by communicating to the disability market how they can contribute to building capacity. Indeed many providers are already talking this approach in their messaging but a quick scan reveals overall a generic promise for an ordinary life. I’m willing to accept that there are people who simply want an ordinary life. In which case there should be providers willing to meet their needs.
But I, on the other hand, don’t want an ordinary life. And I don’t want an ordinary life for my children. I want my children to live lives more extraordinary than they could ever have dreamed possible, just as I have been able to. I recently stumbled across a quote by author Ralph Charell which summarises the polar opposite of the tyranny of low expectations. It says, “Nobody succeeds beyond his or her wildest expectations unless he or she begins with some wild expectations.” Where are the providers for those of us who want more than an ordinary life? Where are the providers willing to set wild, abundant, ambitious expectations for people with disability and their family?