Tuesday, 31 October 2017


“How we spend our days is, of course, how we spend our lives.” – Annie Dillard

Last week, my friend and fellow caregiving activist Helen Ries and I met for coffee. We were on a mission that day to chat with two remarkable innovators from Australia, Eddie Bartnik and Anne Skordis.

Eddie and Anne are both senior advisors to the Australian National Disability Insurance Scheme or NDIS, and they got us thinking about how the aspiration of living just an ‘ordinary life’ could be a catalyst for both personal and social change.

The NDIS is the National Disability Insurance Scheme of Australia. The website describes it as a new way of supporting people with a permanent and significant disability through giving them access to individualised funding, plans and support. The website reads reassuringly, “If your disability means you need support from another person or equipment to take part in everyday activities and you are under the age of 65, the NDIS is almost certainly for you.” And there is even support for caregivers: 

The Scheme funds supports that families need as a result of a family member’s disability, as well as supports that enable sustainable caring by family members. This includes:
·       family support and counselling due to a family member’s disability
·       building the skills and capacity of other family members to manage the impact of a participant’s disability on family life
·       supports that increase the participant’s independence, as well as supports that enable the participant to enjoy social and community activities independent of their informal carers
·       supports aimed at increasing the sustainability of family caring arrangement, including personal care and domestic assistance related to the person’s disability

Eddie and Anne explained a bit of the history of the scheme and how it came to be. The government wanted to explore value for money in helping Australians with disabilities and their families to live ‘ordinary lives’. The productivity commission (a think tank tasked with evaluating value for money in government programs), produced a report in 2009 called “Shut Out’. The idea was to create wholesale change by switching people with disabilities from welfare to insurance benefits. Furthermore, money would go straight to individuals so they could choose the kind of ‘ordinary life’ they wanted and what supports they’d need to achieve it.

An organization called Every Australian Counts was set up to help people with disabilities and their families navigate the scheme. How is it all paid for? Australian voters agreed to a slight increase in income tax and all the previously designated funds to support citizens with disabilities were diverted to the new scheme.

What interested me the most about the NDIS was its core promise of helping families have an ‘ordinary life’. According to Eddie Bartnik, arguments on the basis of human rights don’t go down well with Australian voters. But the idea of equal opportunity to access an ordinary life was something everyone readily understood. The ‘heart’ of the program for citizens was that ‘disability could be any one of us’ and the ‘head’ was that the deal made sense for taxpayers.

Here at home, the family movement social innovator Al Etmanski uses similar language when he talks about transforming opportunity for people with disabilities and their families in Canada. Al exhorts us to ‘ignite the ordinary’ and he calls politically active caregivers ‘passionate ordinaries’. Al believes that an ordinary life is a noble aspiration and that together, we passionate ordinaries can transform our society for the better.  Al says, “It’s time to pay more attention to the brilliant work of the passionate ordinaries among us. To honour them. To have faith in them. Here’s a resolution: let’s nurture a “resurrection of the ordinary” and end our reliance on the superhero/saviour model of social change.” No one is more ordinary than caregivers and our families. It’s us, he’s talking about.
After our meeting with Eddie and Anne, Helen and I looked at each other. “Are we trying to create a super-hero life for our loved ones with care needs?” we pondered. That day, we two passionate ordinaries decided to ignite the ordinary in our lives and in our families. We decided then and there that an ordinary life is a very good thing.
PS: Thanks to Sue Robins for this image and for her thoughts about 'leaning out' into an ordinary life!  



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