“The disability community should be represented at all levels of leadership”

Disability advocate and writer Laura Pettenuzzo shares why she thinks it’s important to have lived experience at the helm of the National Disability Insurance Scheme (NDIS).

The disability community is the only minority group that anyone can join, at any time. Most – if not all – people become disabled as they age. So it’s arguable that most people are only temporarily non-disabled. Taking that into consideration, along with the fact that disabled people constitute approximately 18 per cent of the Australian population, we should be represented at all levels of leadership. 

We should especially be represented in the leadership of programs and services that directly support us.

We could have had that representation, as disabled Senator Jordon Steele-John recently contested the position of Deputy Chair of the NDIS Senate Committee. As a senator for a minor party, The Greens, Steele-John was never likely to get the role - appointing him would have gone against convention and the committee’s rules. But rules can be changed. 

When both major parties chose not to change them - and elected Labor’s Libby Coker as Chair and the Liberals’ Hollie Hughes as Deputy - they missed an opportunity both for the disability community and for non-disabled people too.

The NDIS is, at its best, revolutionary. It’s changed my life and made it so much easier for me to participate in my community. With the help of support workers, I can visit my family and friends in a COVID-safe way. I can access therapy as often as I need it, as well as support with household tasks that are difficult for me due to my cerebral palsy. 

Many others have not been as lucky, and mass NDIS funding cuts have increased. Appointing Steele-John as Deputy Chair of the NDIS Senate Committee would have shown the disability community that we were heard. It would have affirmed the value of lived experience within and beyond the NDIS. It would have offered hope to so many in the disability community. 

Image: Senator Jordon Steele-John

Steele-John’s appointment would have had broader implications, too. In a society built by and for non-disabled people, disabled people are faced with enormous physical and attitudinal barriers to our success. We’re not expected to succeed, so when we do we’re defying ableist understanding of our capability. We’re inviting non-disabled people to treat us as their equals, to recognise us as talented, resourceful, imperfect and undeniably worthy members of society. 

Steele-John’s appointment would have proved all that and more, but as he wrote on Twitter, we still have “so much opportunity to call for what we want: true representation and authentic leadership. Nothing about us without us!”  

We have another opportunity for disabled leadership of the NDIA: there will soon be a new NDIA CEO and Chair. The disability community and our allies are hoping that we will be given choice and control over the scheme that promised to deliver exactly that.

I’ve written about the importance of lived experience and disabled leadership before and I will keep writing about it. I will keep pushing for change, along with so many other advocates, until the disability community – my community – has fair and equal representation.