03/08/2026
I've spent the last couple of days going back through the hearing schedules from the Senate inquiry and something has been bugging me ever since.
There have been six days of public hearings.
Six days of hearing from government departments, the NDIA (like what the actual?! That’s a whole other post!!), the NDIS Commission, universities, researchers, economists, providers, allied health organisations, peak bodies and advocacy organisations. CEOs. Executive Directors. Professors. Commissioners. Policy experts. “Experts.”
Then there were the actual disabled people. Their parents, carers & advocates.
The people in that room who couldn't leave the decisions behind when the hearing ended. We became the "lived experience panel."
I remember feeling the room shift. They spent hours hearing from "experts", then suddenly it was time for the "lived experience panel".
I don't know why that hit me so hard, but it did. Maybe because I'd never really stopped to think about what that language actually says. It says there are different kinds of expertise. Institutional expertise and disabled expertise. One gets introduced with titles. The other gets introduced with trauma.
The Government keeps telling us disabled people are at the centre of decision making, yet we spent days watching "the experts" and in between for an hour each day we got to the "lived experience panel".
Maybe I'm overthinking it, but language matters. Structure matters. Who gets introduced as an expert matters.
There’s a hierarchy of expertise. If you work in disability, you're an expert. If you research disability, you're an expert. If you write policy about disability, you're an expert.
If you’ve spent YEARS navigating disability and a system that constantly demands you justify your existence... apparently that's just "lived experience".
Most disabled people, their families and carers that I know know the NDIS Act better than a lot of the people making decisions about it.
We know Tribunal decisions because we've had to use it to challenge ridiculous decisions. We know policy because every time it changes, our lives change. We know what happens when funding gets cut because we're the ones left desperately trying to fill the gaps. We know how to take chump change and stretch it further than a rubber band. We know the loopholes because sometimes they're the only thing standing between our families and disaster. We know where the system breaks because we're the ones who fall through it.
We also know where the real wastage & overspending is happening, but that’s a whole standalone series!
We didn't choose to become experts. The system made us.
Imagine needing a PhD in your own oppression just to keep your shower chair.
It sounds ridiculous, but that's exactly what so many disabled people, parents and carers have been forced to do. None of us woke up wanting to learn the NDIS Act, Tribunal decisions, Operational Guidelines or disability policy. We learnt because we had to. Because every piece of knowledge gave us a better chance of keeping our supports, keeping our jobs, keeping our kids in school, keeping our independence or simply surviving another review.
They learnt about disability. We learnt BECAUSE of disability.
The irony isn't lost on me either. We were apparently the "lived experience panel", but many of us have become accidental lawyers, economists, policy analysts and advocates simply because survival demanded it.
Titles confer authority before someone has even opened their mouth. Disabled people don't get that privilege. We have to earn credibility every single time we speak. Then defend it. Then defend the fact that we're defending it!
When a CEO speaks passionately, they're respected. When a Professor speaks passionately, they're respected. When a policy expert speaks passionately, they're respected.
When disabled people speak passionately about legislation that will fundamentally change our lives, we're emotional. We're angry. We're biased. We're "too close". We're thanked for sharing our "lived experience".
They walk into the room with credibility. We have to earn ours. Every single time.
For decades the disability rights movement has fought under the banner 🔥 Nothing About Us Without Us 🔥
Somewhere along the way we've accepted something much smaller.
We've accepted waiting until everyone else has explained us before we're handed the microphone.
That's not Nothing About Us Without Us
That's Nothing About Us... after everyone else ™️
There are six standing members responsible for scrutinising this Bill, and participating senators could also attend the hearings.
Yet when it came time for us to give evidence, there were three senators physically sitting in front of us, two appearing by video and one wandering in towards the very end of our designated hour.
We flew across the country at our own expense, took leave from work, organised support workers, left our kids and stood in front of Parliament to unpack some of the hardest parts of our lives because Parliament asked us to.
After everything people had sacrificed just to be there, it was a bit jarring to look up and see so few senators in the room.
Maybe I expected more. I don't know. But public hearings aren't just another meeting in the diary. They're one of the only opportunities ordinary Australians get to look the people making decisions in the eye and say, “This is what your legislation is going to do to my life."
They are one of the most important parts of parliamentary scrutiny, and I think every senator on that committee should have been there to hear us.
Watch the news coverage over the next few days. It'll quote the organisations. It'll quote the CEOs. It'll quote the departments. Disabled people will become the emotional story.
We keep saying disabled people are at the centre of the NDIS. Maybe it's time we stopped proving it with slogans and started proving it with structures. Stop introducing us as the "lived experience panel" after everyone else has spent hours explaining us. Stop treating disabled expertise as something different from every other form of expertise.
Recognise us for what we’ve always been. Because there are some kinds of expertise no qualification can bestow.
We are the experts in our own lives. We are the experts in navigating the systems we’ve had to survive.
