Lifeboat: Disability, Humanity and the NDIS

Quarterly Essay #91

by Micheline Lee

What ails the NDIS?
Caring or careless? In this powerful and moving essay, Micheline Lee tells the story of the National Disability Insurance Scheme, a transformative social change that ran into problems. For some users it has been "the only lifeboat in the ocean," but for others it has meant still more exclusion. Lee explains what happened, showing that the NDIS, for all its good intentions, has not understood people with disabilities well enough. While government thought the market could do its job, a caring society cannot be outsourced. Lee draws deeply on her own experience, on diverse case studies, as well as insights from moral philosophy and the law. She begins by considering what it is to be disabled. And since to be disabled is part of the human condition, she also considers what it is to be human.
This is an essay about common humanity and effective, lasting social change.
"Unless you change how people think about things, you're not really going to change their actions or responses.""How people understand disability transforms how they respond to it. When they saw us as cursed or contaminated, they banished us, euthanised us or left us on the streets to perish. When they saw us as requiring protection, they institutionalised us. When they saw us as defective and in need of a cure, we were hospitalised and medicalised. When they saw us as tragic, they treated us as objects of charity. Now the NDIS has given us a new consumer." Micheline Lee, Lifeboat

Genres: Nonfiction, Disability, Politics, Australia, Essays, Audiobook, Current Affairs

108 pages, Paperback

First published January 1, 2023

About the author

Micheline Lee was born in Malaysia and migrated to Australia when she was eight. She has worked as a human rights lawyer and before taking up writing, as a painter. Her first novel, The Healing Party, was shortlisted for the Victorian Premier’s Literary Award and is currently longlisted for the Voss prize.

Reviews

[Carly Findlay · Rating 5 out of 5]

Lifeboat: Disability, humanity and the NDIS by Micheline Lee is essential reading for politicians, policy makers, disability service providers and disabled people and their families.

The NDIS had so much promise, but it hasn’t delivered.

I’ve written a response to this essay, which will be in a future QE.

[Jessica Moncur · Rating 5 out of 5]

Eye-opening and immensely important. Very well written. Glad to be better informed on this subject.

“Impairment is your biological or individual condition, while disability is structural and caused by the barriers and discrimination in society”.

“In practice, what produces disability is the interaction of your condition or impairment with a [non-inclusive] social environment”.

“We are disabled by society as well as by our bodies”.

[Lisa · Rating 4 out of 5]

I read Micheline Lee's Lifeboat, Disability, Humanity and the NDIS when it arrived, but I didn't get round to reading the letters section and writing a review.  With the release of the NDIS review by Bruce Bonyhady and Lisa Paul, events have now overtaken me, so I refer you instead to this review at The Conversation by Helen Dickinson.  She notes that Lee's essay weaves together personal testimony and detailed analysis of history and policy, and for me, it was the personal experiences and conversations that gave the essay its power.  It's a window onto the reality of a scheme that promised much but failed to deliver, even though its eye-watering costs have now blown out to an unsustainable level.

One of the most vivid examples in Lifeboat occurs when Lee's flight is cancelled at Sydney airport. We've all had this happen and it's annoying — but for most of us the fact that our luggage is already on the plane and can't be unloaded for security reasons doesn't matter at all. But for Lee, strapped into one of those skinny airline wheelchairs that fit between the aisles, waiting four hours for the next flight, it's something else again.  She can't move this chair herself, and it's hard to keep her balance.  She calls out for help but nobody takes any notice.  Would it really have been so difficult for them — to retrieve her chair so that she could do what you or I might do — browse around the shops, get something to eat, have a drink at the bar and maintain a sense of independence and dignity until she finally gets to board the plane?

Lee's essay still resonates even though the review has been released and looks promising.  It's still well worth reading.

[Harsh Nat · Rating 5 out of 5]

Excellent book. It is so meaningful to hear from disabled people about the system that shapes their lives.
My standout was mid way when Micheline describes the NDIS as a market business model where as the solution actually lies in society taking responsibility for its most vulnerable population and changing the culture to address their needs…
So much of disability care is riddled in our culture.
What the price of living a life!?…

[Ash · Rating 5 out of 5]

These reflections are disturbingly vivid and several times I was brought to tears. Why are we so cruel? What was worse is that people with a disability are simply ignored. A piece so many people would benefit from reading. But they won't.

[Tanya · Rating 3 out of 5]

So much required to make ndis work the way it was intended

[Joel D · Rating 4 out of 5]

I'm reviewing this essay from the lens of: how worth reading is this essay three years later in 2026? It's a bit of a rough standard to apply, but I guess this review is intended for an audience who is reading it in 2026 or later — not in 2023.

With that in mind I'd say: this essay has plenty to offer! Quarterly Essays are pretty hit and miss and this one is not a miss. I think Lee does a good job of bringing in her personal experiences to help give colour and insight to the reader, while also zooming out to talk about experiences of disability and the NDIS more broadly.

The essay serves as a good general overview of the NDIS — how it was designed, the intent, some of the history, and then where it is going wrong. I actually really appreciate how frank and honest Lee is about the pitfalls with the NDIS as it currently stands. She is less interested in the sheer cost (fair enough) and more on the lack of quality supports for participants. So that's a good perspective, particularly in 2026, where so much of the criticism is just about budgetary impacts and less about what is actually happening for participants.

I also thought it was good how Lee brings out this idea that the NDIS was almost a distraction from more fundamentally addressing ablism in society: that a bunch of people get lots of paid supports but we need broader changes to how things work.

That said I then found the essay ends quite suddenly and it feels like it doesn't quite give a clear conclusion. Lee sort of ends by saying that we need an NDIS that is more grounded in rights and a commitment to the dignity of each individual with disability. This is all well and good but it feels like it dodges some of the trickier questions: what does this NDIS actually look like? Does it have 600,000, 760,000, or 900,000 participants? How much funding is there for community participation? It's not like it is Lee's fault that she didn't engage with these questions three years ago, but they illuminate what the essay seems to be missing to a contemporary reader.

With all that in mind I'm actually bumping my review from three to four stars because I do think this essay has plenty to offer and is a great entry point for understanding the NDIS strongly strengthened by the anecdotes and personal experience that Lee weaves throughout.

[Jenny Esots · Rating 4 out of 5]

A sobering read that shines a beacon of light on the beginnings and roll out of the NDIS.
I did not have any input into the origin of the NDIS, or maybe I did, as I have been navigating disability services in my work as a registered nurse for over forty years. Plus have personal experience with supporting people in my family with a disability.
I have been acting as a support person on the NDIS for several years and it has been a godsend to have this level of support.
The roll out may have been a total work in progress - and the support industry has struggled to supply all the services needed - and there has been examples of fraud and horrifying neglect, but the majority of people receiving the services have been very grateful they can determine what they need and how it is delivered.
Micheline Lee has a lifelong disability and long experience with the genesis of the NDIS. Her recollections, examples and analysis are sorely needed.
Australia is providing a lot better services for people with a disability, but there is more to be done to recognise people with a disability as fully accepted members of our world.

[Simon Preuss-Kearney · Rating 5 out of 5]

Very informative and engaging book, from a person with lived experience of disability.
I really appreciated Lee taking the space in this book to highlight that the NDIS is an insurance response to disability, rather than the traditional association with charities or welfare. Her account gives context to what having a disability was like prior to the NDIS, why it was brought into being, what it promised to do, what the program actually did, and what is planned for the future.

I found her account to be engaging, emotionally open and honest. I am better informed now and I encourage anyone to learn more about the strengths and problems with the NDIS.

[Loki · Rating 5 out of 5]

It's both inspiring that we've come so far, and heart-breaking that it has taken so long and there's still so far to go: the squandered opportunity, indeed, the unfolding tragedy that is Australia's NDIS scheme, here put under the microscope. Definitely worth your time if you're a thinking, breathing human who intends to vote in this country.

[Darcy French · Rating 4 out of 5]

A really solid QE. Powerful, evocative and deeply personal. Both inspiring and mournful, there is so much work to be done. I am so grateful Micheline drew on human rights principles and thinking throughout this essay.

[Tallulah · Rating 4 out of 5]

Really good run down of the NDIS I didn't know enough about. Had no idea it was built on the concepts of insurance and neoliberalism. How anyone thinks the free market can deliver something like disability services is utterly beyond me.

[J S · Rating 5 out of 5]

Superbly written and engaging outline of disability supports and the NDIS. Thought provoking, enlightening and brilliant use of real people and their stories to bring the hard hitting message home. Thank you for writing this.

[Baylee · Rating 5 out of 5]

This was an excellent read. It’s so relevant to the world we live in now. If you want to understand the necessity behind disability advocacy then read this. It’s an excellent read and I highly recommend.

[Rueben · Rating 4 out of 5]

3.5

[Luke · Rating 5 out of 5]

Conscience, heartfelt and spoke directly about the core issues. As someone who often works alongside the NDIS, I learned a lot about how it is supposed to function.

[Andrew · Rating 5 out of 5]

Essential reading for everyone who wants to learn about disability in Australia.

[Diana · Rating 4 out of 5]

The lived experience stories are powerful, and the message that NDIS treating people with disability as consumers in a capitalist system isn’t going ensure full rights for people with disability.

[Braden · Rating 4 out of 5]

A good, emotive yet educated take on the NDIS, how it benefits society and areas for improvement

[Ella Pia · Rating 4 out of 5]

Honestly a really heartbreaking read that encapsulates some of the problems with the NDIS well.

[Grant Knuckles · Rating 4 out of 5]

G,day