Micheline Lee describes working as a lawyer and being rejected by a client as soon as he sees her. “He told the manager that he needed a lawyer who would look the part in court.”

This is an all-too-common experience for disabled professionals. We’ve been told our whole lives that we should fit in, make ourselves useful: in Lee’s words, “deny and overcome.” Then, when we do, we find out there’s a certain view of what a successful person looks like – and it isn’t disabled.

Lee’s experience with a client highlights the unspoken reality disabled people face every day. We hear so often that Australia is the land of the “fair go,” but what does that actually mean? Does it mean that everyone should have the support they need to live a life they love? Or does it mean everyone gets treated the same, even when that means unequal outcomes?

Lee is sceptical of the whole concept – and who can blame her? It is with this scepticism that she analyses the current state of the National Disability Insurance Scheme.

Perhaps the greatest strength and the greatest weakness of advocating for disability rights is that everyone says they support them, from shelf stackers at the supermarket to politicians. Even in today’s polarised environment, it’s only someone right on the outer fringes who would say “I’m against disability rights” out loud.

But when it comes to the crunch, will they willingly reach up to the top shelf to help us get an item? Will they support our right to lead as meaningful a life as theirs? The reality is that people with disability can’t count on the answer to this question being yes. We strive for independence, but too often it is labelled as stubbornness.

It was with this doubt in our minds that we realised our humanity wasn’t enough to get the NDIS over the line. In our society, a life is not worth as much as others until there is economic output. And so we embraced an economic model.

Lee describes sector elder Bruce Bonyhady’s light-bulb moment talking to then deputy prime minister Brian Howe, who advised him to frame disability policy as risk insurance and investment rather than welfare. The spectre of Bonyhady looms large over Lee’s essay, like the Architect from the Matrix, who creates a system that keeps the machines powered and the humans at bay through the construct of choice. Lee invites us to sit with Bonyhady’s description of the choice faced by the scheme’s creators. “Insurance appeals to people’s self-interest in a way that human rights don’t,” he said. “Some people see human rights as something that a minority goes on about too loudly and so an emphasis on human rights might have risked rejection of the NDIS.”

Without Bonyhady, we may not have the NDIS at all. He worked with thousands of other disability activists to advocate tirelessly for this life-changing policy. The choice they faced was critical to its sustainability – tell the story of how every human is equal or sell the scheme as one of economic efficiency.

It took us decades of thinking about disability in new ways to get to the NDIS. We passed the word from person to person, any way we could, that the disadvantages experienced by people with disability are the barriers put up by society – a lack of ramps, inaccessible toilets, strobe lighting, a lack of plain-language information.

Julia Gillard called the NDIS “the greatest change to Australian social policy in a generation.” Yet to sell the social change to our neighbours, it was framed as an economic reform. As suggested by Brian Howe, it was called an insurance scheme.

Perhaps the existential problem the NDIS faces goes to the heart of insurance as a concept. You insure yourself against something bad happening – a crash on a road, a fire in your house, an unfortunate mishap with your pet labradoodle. Nobody said it better than the late Stella Young: “We have been lied to about disability. We’ve been sold the lie that disability is a bad thing. Capital B, capital T. It’s a bad thing.” You get insurance so a bad thing doesn’t happen.

People without disabilities bought the NDIS because they didn’t want the bad thing to happen to them. People with disabilities knew this. We’ve always known the risk that a fair go doesn’t include actual equality. This was the trade-off to lifting our standard of living towards that of the wider population.

Fast-forward to now and we are seeing the results of a human rights scheme built on sandy foundations that sidelined human rights. The economic imperative of the scheme’s structure has inevitably seen a retreat towards disability as a medical diagnosis – away from the social model of disability that informed its creation. It is a scheme we should be grateful for as a charitable act by the taxpayer.

I’ve heard the suggestion that the I in NDIS should be changed to Investment.

In my opinion, that too falls into the trap of seeing a person as a dollar figure. We are not people but consumers, left to the whims of providers. We are not contributors to a successful society but burdens on the taxpayer. Our independence is reduced once more to stubbornness.

The ultimate question that Lee’s essay asks is this: what is the future of the scheme?

It also asks: Is disability a normal part of what it means to be human? Is it something our society can embrace not for its economic opportunity (although Lee points out that the numbers do stack up) but for the fact that we are your friends, children, parents and neighbours?

While putting people with disability at the centre of decision- making is key – and is in fact required by international law – the burden of the answer must fall to people without disability. Compare Lee’s legal client to the woman she encounters at the airport. An airport security staffer tells Lee she should have a support worker with her to lift her bag onto the security conveyor belt. This situation clearly wouldn’t have happened before the NDIS. The woman behind Lee mutters, “Unbelievable,” and lifts the bag up.

The wider population can’t be bystanders waiting for people with disabilities to do the heavy lifting. It’s not on us to fix the holes that opened up because people without disabilities were assured the NDIS was in their self-interest. Yes, we need to fix the scheme. But human rights must be at the centre.

Lee writes that “it is through acceptance of our universal condition of vulnerability that the attitudes in our society which cause segregation are most likely to be changed.” To be human is to be vulnerable.

“Disability was something I had to deny and overcome,” Lee says. “This mindset influenced the way I tried to live right up until my twenties.” This rings true for so many people with a disability. We have already been on the journey of accepting this. It’s up to others to come on that journey too.

So, to those wanting to know how to fix the scheme: read Lee’s essay and be like that woman at the airport. Shake your head and mutter, “Unbelievable,” while lifting the NDIS to where it should be – with human rights at its heart.