Micheline Lee’s Quarterly Essay, Lifeboat, is essential reading. Her story of travelling for work to Byron Writers Festival is a deeply personal one, showing her vulnerability and demonstrating that inadequate disability support compromises her independence. It disables her.

Micheline decides not to take a support worker on the way there, to save the government money – but without a support worker, and very little help from airline staff plus a flight delay, the trip turns out to be frustratingly inaccessible – and frightening. She’s without her power wheelchair, which she pleads with the staff is not to be considered luggage. A flight delay means she’s unable to go to the toilet for hours. It’s scary, and deeply undignified – a long way from the choice and control the NDIS was designed to provide. But is the failure here just that of the NDIS or of wider society as well?

The NDIS is a difficult scheme to understand, and even more perplexing is the inconsistency in its application. It makes no sense that the NDIS will support a disabled parent to get showered and dressed, yet won’t support a disabled parent to care for their baby. Just as disability can’t be separated from identity, parenthood can’t be separated either. Prices of mobility equipment increase if the NDIS is involved, much like the wedding tax. And getting approved for the NDIS seems to depend on the case worker you get. It makes no sense and is very unfair.

Most people I know who are on the NDIS haven’t had a smooth ride. They talk about the cumbersome application process, how defeated they are to be rejected by a system that seems to know nothing about their disability, and how scary it is leading up to a plan review. The medical administration of being disabled is enormous; the NDIS adds more stressors.

The deficit model seems to be what keeps many of my disabled friends from applying. It is the main reason why I won’t apply for the NDIS (or the Disability Support Pension, either). You need to prove how disabled you are: how much you cannot do. In the case of the NDIS, disability equals inability.

Only it doesn’t. Disability doesn’t mean someone is unable. Disabled people have skills, hopes and dreams. And when barriers are removed, disabled people can better participate in society. And for me, disability equals pride, identity, community and culture.

The NDIS is supposed to be an investment in individuals, and Micheline writes that some plans reduce in cost with the ambitious goal of the NDIS helping people improve, making us less disabled. But many disabled people won’t get “better.” Many disabilities are progressive. Micheline writes of her own experience of her disability progressing, and the grief and adapting that comes with this.

In Stella Young’s seminal 2014 TEDx Talk, she spoke about how disabled people don’t overcome our disabilities, we overcome barriers. And these barriers aren’t overcome with positive thinking, they’re overcome with accessibility provisions. Stella said: “No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. Smiling at a television screen isn’t going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It’s just not going to happen.”

As Micheline describes, while the NDIS has helped many disabled people, there is also a misapprehension that it has solved inaccessibility across the board. Micheline has observed that people working at services such as supermarkets and airlines have stopped helping disabled people, because it’s assumed that people will have a support worker. That the NDIS has “fixed” it.

The NDIS is not a catch-all. Only 480,000 Australians are on the scheme, and there are 4.5 million disabled Australians – probably more, because many disabled people don’t disclose or identify. And the NDIS should not replace everyday access provisions in the community.

“I don’t want the NDIS to take the focus off the need for society to be more inclusive. The NDIS has helped to minimise the individual effects of my condition. But it has not helped make society more accessible,” Micheline writes. “I don’t want to be confined to my own little lifeboat. I want my community to be open to all and inclusive.”

So do I. The NDIS decision-making process needs to be less arbitrary and more consistent. The medical model of disability needs to be replaced with the social model of disability – where barriers are removed; and it should acknowledge that disabled people’s conditions can deteriorate. As Micheline writes, there should be no shame in asking for help; the NDIS needs to be less punitive and more hopeful for participants.

Micheline Lee’s Quarterly Essay should be read by every support worker, policy-maker and NDIA staff member. The NDIS must be fixed, to deliver what was promised.

Carly Findlay