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


This issue contains correspondence relating to Voice of Reason by Megan Davis from Sana Nakata & Daniel Bray, Mark McKenna, Antoniette Braybrook, Daniel James, Damien Freeman, Rachel Buchanan, Henry Reynolds, and Megan Davis.

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

129 pages, Kindle Edition

Published September 11, 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

[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 Swank · 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

[Grant Knuckles · Rating 4 out of 5]

G,day