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Inside Parliament, Fighting for the Future of the NDIS.

The first thing I notice when I arrive in the little box room where I’m scheduled to testify against the government, is the weight of the door. It’s not a door I or anyone in a wheelchair, would be able to open on their own, especially not when you’re trying to move through it at the same time.

The next is the thickness of the carpet. It’s three layers deep and my wheels sink into it like quicksand. I’m not strong enough to move on my own.

I make a joke to my support worker that being faced with a mortal enemy (carpet) right before you go head-to-head with the government is a hell of a welcome.

I lock eyes with Senator Jordon Steele-John and find myself wondering not for the first time, how he manages this place. The overt and subtle ways that Parliament itself and its processes are decidedly unfriendly, some might even say hostile to people with disabilities.

Case in point: our community was only given a two-week window in which to submit evidence for the Senate inquiry into the Albanese government’s ‘Securing the NDIS Bill’. A Bill that threatens to destabilise the lives of hundreds of thousands of people and their families around the country. I won’t get into the details here (you can watch my speech for that) but to give you an idea of just how scary this Bill is, our community mobilised fast enough to produce 4,000 submissions and 3 days’ worth of hearings. That’s how much is at stake.

Once again, I’m reminded of how privileged it is when people say they don’t care about politics or find it boring to think about/get involved with. What a luxury. One I will never have, every breath in my body, an inherently political act. Defying broken systems, steel barriers and a bar of expectations for people like me.

Every single piece of evidence given, says this Bill is a bad idea. Without exception. That it is reckless, careless and entirely devoid of what the government claimed they were trying to do; address the fraud and mismanagement rife within NDIS providers. In order for that to be true, at least one of the reforms would have to target them and not us, the participants. The people who need the NDIS.

I consider myself a typically very polite person. I’m warm and bubbly, well able to strike up a conversation with anyone no matter what. It’s a kind of legendary family skill, passed down through generations.

That day, in front of those Senators, the warmth turns to ice. I am not polite, refusing to engage in small talk or yield even an inch. It’s not entirely conscious, but I’m angry. Furious, even. That disabled people are being forced yet again to defend our right to exist. To be out in the world. This is 2026 and we deserve better.

When the Senate Committee thanks me for coming, I say, simply; “The lives of my community depended on it.” They don’t know what to do with that, my anger, my resolve, my refusal to soften my edges. I’ve been told to prepare for questions at the end of my speech. None arrive. No one has anything to say.

When I was preparing what I would tell them, I imagined each of my sentences like a sharpened arrow, deliberately poised to strike. It seems they’ve hit their targets. I was afraid, but I did it.

The Health Minister doesn’t like my conviction that if the Bill passes, people will die. It’s not an isolated message, instead echoed over and over by experts and others with lived experience, but he denies the truth of it repeatedly. What else does he think will happen when people’s ability to leave their homes becomes so dramatically restricted?

Our warnings are so dire and so unforgiving, the pressure so relentless, that the Bill doesn’t pass. At least, not yet. We’ve been given more time. More time to organise and share and demand better. More time to keep adding to our mountain of evidence until it becomes an avalanche, impossible to ignore.

I’m incredibly proud to know our community did that. Harnessed our collective power and worked towards a common goal.

I’m also incredibly grateful for anyone who used their political capital in Canberra to slow this down. Maybe humanity will prevail, after all…

But the fight is not over. The work is not done, and the disabled community can’t do it alone.

So, if you are reading this, get ready. We need you. Educate yourself. Use your platform if you can. Be brave, even though it is terrifying.

Why? Because it matters. And the only way to get to the world we want to live in is to work for it.