In the wake of the latest NDIS reforms, I’ve been hearing a familiar refrain: that we need to rebuild the “community supports” that existed before the scheme. The sporting clubs, arts programs and local services that supposedly made it easier for people with disability to take part in community life.

It is an appealing and convenient narrative. It is also, for many of us, a fiction.

Before the NDIS, inclusion was not the norm. It was patchy, fragile and often conditional. The 2009 Shut Out report described lives marked by isolation and constant negotiation for access to ordinary aspects of community life. The Productivity Commission later found a system that was underfunded, unfair and deeply disempowering. One that rationed support and left people dependent on whatever informal networks they happened to have, assuming they were lucky enough to have those at all.

I know what that felt like. I lived it, and spent years advocating for access to the arts. That’s why I can say with confidence that the rhetoric of “inclusive communities” never matched the reality for me or for many disabled Australians.

My husband and I are both blind. If we wanted to go to a concert, perform at an event, or take our young children to the beach, it was rarely as simple as deciding to go. It meant navigating a maze of informal arrangements. How we would get there, manage equipment, move through the space, buy food, keep our kids safe and get home again. Even when it all came together, there was always a low, persistent anxiety that something would fall apart.

That constant vigilance is what is now being quietly reintroduced into this conversation, and I have no desire to return to it.

No one is proposing to remove social and community participation supports altogether. But we are already seeing a gradual tightening: fewer hours, narrower interpretations, and growing pressure to rely on informal support. It is subtle, but its impact is anything but.

A common example I often hear is the suggestion that people with disability should attend events, like a football match, with friends rather than paid support. It is often framed, by nondisabled people who have never had to navigate it, as a vision of genuine inclusion.

I find this deeply unsettling.

It assumes your friends share your interests. That they are available. That they can take on the practical work of navigating crowded spaces, managing logistics and ensuring safety—without strain or consequence. And it assumes that asking them carries no emotional cost.

What this ignores is the unseen labour beneath it: deciding who to ask, how much to ask, how not to overstep; ensuring your presence does not become someone else’s burden; managing your own enjoyment alongside a careful monitoring of theirs.

That is not inclusion. That is dependency, dressed up as belonging.

For many of us, the NDIS changed this in ways that are hard to neatly articulate. Beyond simply providing services; it altered the texture of everyday life.

For the first time, participation could be planned with certainty. I could decide to go somewhere without constructing an elaborate web of contingencies. I could enter a space without that low-level hum of anxiety about whether I would be able to leave safely or navigate what lay ahead.

So the difference is not only practical. It is psychological.

It is the difference between scanning constantly for what might go wrong, and being present in the moment. Between negotiating your existence and simply living it.

To return to a model built on goodwill and informal support is to ask people with disability to resume that vigilance. To accept that participation is conditional and dependent on the generosity of others.

That is not a step forward. It is a regression.

None of this is to minimise the importance of inclusive communities. Sporting clubs, cultural institutions and local organisations should absolutely be places where people with disability are welcomed.

But inclusion cannot be built on expectation alone. It requires structural change.

Disability Representative Organisations have been clear: sustainability matters, but not at the cost of shifting risk back onto people with disability. Reform must be part of a broader package that builds foundational supports, strengthens safeguards, invests in independent advocacy, and implements the Disability Royal Commission’s recommendations.

Crucially, it must be designed with, not for, people with disability.

That means genuine co-design, characterised by shared decision-making from the outset, where lived experience shapes the problem, the options and the outcomes. Without that, we risk repeating the same cycle: policies that look reasonable on paper but fail in practice.

If the government is serious about reform, it must be equally serious about how reform is done. Reform must protect social and community participation supports within the NDIS and pair this with meaningful reform to discrimination law, so that access to community life is not optional.

We do not need to rebuild the past. We need to refuse it.

That’s because once you have experienced what it means to participate on your own terms, to make ordinary decisions without negotiation, apology, shame or fear, you come to realise this is not a luxury.

It is the baseline.

And the task now is to ensure this is not the exception, but the expectation—for everyone.