Grattan’s Summer Series: Micheline Lee on Lifeboat: Disability, Humanity, and the NDIS

Each year Grattan selects its best books of the past 12 months as recommended reading for the Prime Minister and all Australians over the summer holidays. In this summer series, we discuss some of the works on the list with the people who wrote them.

In this special podcast, Hannah Orban and Alastair McEwin discuss the Quarterly Essay, Lifeboat: Disability, Humanity, and the NDIS, with author Micheline Lee. The essay explains what it’s like to live with disability in Australia, the big improvements that the National Disability Insurance Scheme has brought about, and the challenges that remain in accessing and using the NDIS.

Transcript

Hannah Orban:

Today in our summer podcast series on Grattan’s Prime Minister’s Summer Reading List, we’re discussing Micheline Lee’s Quarterly Essay, Lifeboat: Disability, humanity and the NDIS. It’s an essay we recommend everyone reads, especially Australia’s leaders. In it, she discusses what it’s like to live with disability in Australia, the big improvements that the National Disability Insurance Scheme, or the NDIS, brought, and yet the challenges that remain in accessing and using this scheme.

The tension between human rights and financial sustainability and in the persistent stigma against disability in Australian society. It’s an eloquent, gracious and fascinating essay, and we reckon everyone should read it. Of the 4. 4 million Australians with disability, only about 14 percent or roughly 630, 000 people are on the NDIS.

So most Australians with disability do not get support from the NDIS. Those who are in the NDIS can get great support, although clearly that’s not a universal experience. So disability is a big part of our lives as Australians. And with the advent of the NDIS, disability is a critical policy area too.

I’m Hannah Orban, an associate in Grattan’s disability program. And I’m here with Alastair McEwen, Senior Fellow of the Disability Program. We are so pleased to have Micheline Lee here with us to discuss her essay. Hi Micheline and hi Al.

Micheline Lee: Hi, it’s a real privilege to be here with you Hannah and Alastair.

Hannah Orban: So we’ll jump straight in, Micheline, you’re a writer, a former human rights lawyer, a mother and a person with disability. How does having a disability affect all the other strands of your identity?

Micheline Lee: I’d have to admit, that I wasn’t always the disability rights activist that I am now.

And if you’d asked me this question when I was in my early twenties, I might have defensively said, I’ve never let my disability hold me back. I rise above my disability and overcome it. And I’m just as good a lawyer or mother as anyone else. That’s because I had been affected by society’s stigmatisation of disability, and also responding to my own upbringing, where my parents, who became fundamentalists when we came to Australia, believed my disability was the work of the devil and I needed to be healed.

So when I was younger, I saw my disability as a defect, and something I had to deny and minimise in order to fit in. When I started as work as a lawyer I lost almost two hours every day just going to the toilet because my workplace didn’t have an accessible toilet and I had to go to the shopping centre where they did have one so I’d have to work extra at night at home after work.

To be accepted to adopt my son I had to minimise my disability. But through learning and living, I discovered the lies in the prejudices I had absorbed. Disability is not an individual defect. Disability, vulnerability is part of being human. Part of normal human variation. The problem is society that is built only for a very narrow conception of able bodied and autonomous being.

In fact, no one is autonomous, we’re interdependent. Living with a disability has helped me become very aware of how discrimination and exclusion works. It’s made me a better human rights lawyer. It’s also made me question things more and embrace diverse views. I think it’s made me a better mother too.

My son says he likes hanging around with me for the disabled parking. Well, but more seriously, he says that seeing that everyone has struggles has made him more accepting of himself and others. And as a writer, without the lived experience of disability, I wouldn’t have been able to write Lifeboat. I’ve told other people’s stories and my own in as real a way as I could.

People don’t like to talk about their own vulnerability and I’m no exception to that. And that’s what made it so difficult writing the essay. However, I knew it was important to open up because so much is written in a very academic and abstract way and we need to see, you know, the flesh and blood in all of this.

Alastair McEwin: The NDIS is a remarkable disability policy, both in Australia and globally. And yet, throughout your essay, you describe so poignantly the difficulty people face in accessing and using the NDIS. Can you tell us about what your life was like before the NDIS and how it’s changed with the NDIS?

Micheline Lee: I couldn’t walk from an early age and my, disability is a progressive one. and all my life I’ve remembered this fear of becoming more and more dependent, and as I grew older I, I feared having to go into a home at the stage where, I needed. you know, around the clock care. in the last 20 years I’ve needed more daily care and that has increased with time.

Before the NDS, there was state based disability supports. There was no entitlement to have the disability supports you needed. I was on a waiting list for supports because budgets, during that time weren’t allocated to need. They were just arbitrarily set. when I was finally assessed as needing a certain number of hours, only half of, those hours could actually be, be funded, and I struggled to get to work and to be showered and to have my daily needs met, and I also struggled to afford the very expensive disability equipment I need and I had to apply to a charity, for instance, to pay for the hoist I needed, to transfer me from my wheelchair. But now the NDIS is based on need. there isn’t this arbitrarily set, it, there’s an assessment and, there’s supposed to be choice and control, and, all reasonable and necessary needs, are supposed to be met. So choice and control is a really big thing with, um, the NDIS, goal.

Before agencies were provided with the funding and they decided what care you need. I remember applying for funding to go to the pool with a carer and I only needed one carer, but the agency told me I needed to have two carers to operate the hoist that helps me into the pool. but since we can’t afford to give you two carers, you can’t go to the pool.

For others it’s had a much larger impact. Young people have had to live in nursing homes because the care hasn’t been available for them in their own home or elsewhere. And now we have individual funding so that individuals can go out and buy their own services. And for those who can navigate the scheme and the market, the NDIS has given more choice and control.

The NDIS has been life changing for many and for me I have been better off. Overall, I don’t fear now being put in a group home if my disability progresses to the point where I need round the clock care. And I can choose my support workers. Choice and control is still limited because of the way the NDIS has been designed, so for instance, because I need a lot of customisation, for my electric wheelchair, it’s been very difficult for me to find a provider who will actually do this work because there’s not enough profit in it.

In fact, I’ve been searching for the last two years and still not found a provider For me a scheme is not effective if it doesn’t reach those who are more difficult to reach and the NDIS hasn’t delivered and in some cases, it’s been detrimental for those most marginalised.

The review has, has acknowledged these things. The scheme is inequitable, very complex and difficult to access. People are at the mercy of the market to buy the supports and services you need, We depend on a market driven scheme where services flow where profits are to be found, and where an individual’s needs are seen as too complex, difficult, or they live in remote areas, even when they have the funds, they can’t convert those funds to actual services and supports.

And there are a few safeguards and supports to make sure people are actually receiving good and safe disability supports. As Hannah was saying before, as a result of governments putting money into the NDIS, they’ve neglected people with disabilities not eligible for the NDIS. NDIS and community and mainstream services have been neglected, people not eligible for the NDIS have had services that were formerly in the community, discontinued,

Hannah Orban: it’s telling that, there is still so much to fix in the NDIS. You know, we’ve come a long way since the state funded system, um, where, you know, as you say, half of what you needed was approved. And now, you know, you’re meant to have choice and control within the market, but the market isn’t really delivering enough options for people.

And so, you know, there are thin markets everywhere, particularly in rural areas, but even in the cities, and for certain types of services. There’s still a long way to go in, in getting that market stewardship right. And foundational supports, which they announced in the NDIS review as being sort of a solution for, people with disability who are not in the NDIS,foundational supports are meant to be a solution for, many millions of Australians with disability,but we don’t really have a sense at this stage of how they’ll run and what they’ll cover, and when they’ll be available. Micheline, you, you spoke really eloquently about the ways that the NDIS has changed your life in comparison to the state run system and, and some of the issues that remain, you know, what are the kind of best and worst things about the NDIS

Micheline Lee: The best thing is that for the first time, we have an entitlement to reasonable and necessary supports, and the size and scale of the NDIS, is a testament to the commitment of Australians to, more equity, it’s also a testament to, or an acknowledgement that segregation is a serious problem in Australia and that we need these goals of inclusion.

The worst aspects of the NDIS for me, is that, as I was saying, it’s inequitable. and, the broader changes to society have been neglected. We’re disabled by our bodies and by, um, the barriers and the inaccessibility of society, and you don’t increase inclusion, just by focusing on the individual.

You need these broader changes made, and as you were saying, that’s something that’s been, acknowledged by the review, which is great. We’ve seen an NDIS that had the goal of participation but, um, it hasn’t actually increased participation, and many people with disabilities still live very segregated and isolated lives and I understand that, that the number of group homes, segregated group homes haven’t decreased, and there are many people with disabilities who live their lives, with really only their paid support workers, in their, in their social circle.

So Bill Shorten coined the word lifeboat, the NDIS has been, treated like a lifeboat where you either get on this individual. lifeboat, or, you’re not going to be saved and we don’t want saving, we want a more, inclusive society.

Alastair McEwin: Thank you, Micheline. I’ll ask the next question. Before we do that, it’s interesting to reflect on how government and politicians come up with interesting analogy. So we’ve gone from the lifeboat, the only lifeboat in the ocean, and we’ve also heard it being described as an oasis in the desert. So it’s interesting they used, you know, geographic and natural, you know, phenomenon to talk about, uh, what is fundamentally something really quite personal.

That should also be recognized by all of society as something that is integral and essential for disabled people to be able to participate.

In terms of participating in society, the question I have for you, Micheline, is in your essay, you write about a trip to Byron Bay, where your flight was delayed and the airline didn’t bring your wheelchair to you, which you needed to get around. And in that instant, you decided not to take a support worker with you.

Can you tell us about why you decided not to take a support worker with you and what this incident showed you about the NDIS?

Micheline Lee: So I, remembered really wrestling with whether I would take a support worker with me because I knew there were risks involved. but I wanted to save NDIS money but, most importantly it was a kind of, of protest, um, for me.

I don’t want to have to go everywhere with a support worker. I want to know that we are in an inclusive caring community. And since the NDIS, there has been this perverse effect that instead of society becoming more inclusive, they’ve said, leave it to the NDIS. There seems to be this expectation to always have a support worker with you.

So the staff in the airport on that day kept asking me, where was my support worker, rather than provide the help as they would have in the past. And it means a lot to me, this notion of, a society that you can trust, where you know you can go out,and people will be inclusive and helpful.

In my daily life, I manage to stay at home by myself because I, I have neighbours I can call on if I have a fall or other problems. When I’m out and about I often drop things or need to get something out of my bag, which I can’t do by myself. Rather than have a support worker with me all the time, I’d rather be able to ask passersby and people in the community to lend a hand.

It’s better for everyone. Older people, children, people whose first language isn’t English, someone having a hard day. If society caters for vulnerability and doesn’t see it as something you always have to buy individual support for. Some people need intensive personal support, but others are needing more of this support simply because the community isn’t accessible.

So for example, having more accessible public transport will mean people with disabilities don’t have to rely on their support workers to drive them around. That will save money, and it’ll mean that you’re out and about in the community more. So, we want the NDIS to be a service that actually helps people participate rather than separate.

Alastair McEwin: I think it was very striking, Micheline, in that, from that essay, how you described really well the perception that nearly everyone had in the community that the NDIA is the 100 percent solution for every disabled person and therefore there should be almost an NDIS thing attached to everyone. So I think that was a really important thing that you described in your essay and it helped me to also think about how can we now challenge Particularly where even politicians seem to have taken that, that message themselves.

Oh, the NDIS will fix it. The NDIS will solve all the problems. So I think we’ve got a long way to go in terms of just challenging head on the very reason why the NDIS was established in the first place.

Micheline Lee: And Alistair, your work on the Disability Royal Commission was, fantastic and the emphasis that you put on the need for that cultural change and the, um, the need for, society and governments and people to, to understand that disability is, is just a core part of, of society, um, and needs to be treated as such.

Hannah Orban: Throughout your essay, Micheline, you really draw out this tension between the NDIS as an insurance model and the human rights of people with disability. And right now, the financial sustainability of this scheme is really front and center.

For, um, commentators and for the government, and you know, the disability community is also really concerned about budget cuts, understandably in this, in this climate. What do you make of this tension between financial sustainability and human rights and what do you think policymakers should do about it?

Micheline Lee: Of course we want the funding for the NDIS to be used well and managed well and be effective in achieving better participation for disabled people. Often when they say something is sustainable or not, seems to depend for government on whether the taxpayer sees it as value for money.

We understand many Australians are struggling at the moment. But at the same time, the government is considering tax cuts for the wealthy, so a lot depends on priority. So much depends on whether our society really recognises people with disabilities as equal, whether they see it as a core part of society that disabled persons can take part like everyone else.

Or whether it’s framed as an add on or a financial burden. Policymakers bend over backwards to show the business case for human rights. To show the money saved through more education, employment, and less hospitalisation of disabled people. And yes, there is a strong business case for human rights.

But what I think we should be doing more is emphasising that the government needs to govern for all and not discriminate and that we don’t want to live in a community that excludes disabled people. All those benefits of a society, education, employment, public transport, social life, they need to be open to all.

If government is not going to treat disabled people equally, it has the burden of proving why not.

So funding for disability and support and inclusion must be seen as a core part of running society and not something that’s threatened whenever looking for areas to cut spending. The next part of the NDIS will be a test. Um, the NDIS review, review has identified, um, that sustainability of the NDIS is, is a priority and at the same time it’s, recommending that billions more are needed to make schools and communities more supportive and inclusive, so that the NDIS, doesn’t cost so much.

So it is really fundamental that, our society do have the understanding that disability is just a core part of how society has to run.

Hannah Orban: You know, as you were pointing out before with accessible transport, there’s been this shift towards expecting the NDIS to do everything. And, you know, it can’t, it can’t do everything. It can’t do all policy. And it certainly can’t change attitudes by itself, either.

And so, you know, it’s really time to look not just at the NDIS but you know, all of society and other policy options as well.

Alastair McEwin: And if I can just jump in and say, yes, accessible transport is quite a common example when, for example, if I speak to, uh, you know, policymakers or to lawyers and often they’ll say, oh, well, we need more accessible taxi. Now, recognising that every single person who has a mobility issue may not be able to use public transport, but I think there is a very strong argument for saying if we make public transport much more accessible, I think you will find that many more people who have wheelchairs or mobility aids, will use public transport if it was accessible.

Micheline Lee: Absolutely. Um and I think research has been done on that. And it’s not just people with mobility disabilities, it’s, it’s people with cognitive impairments as well that be designed, so that there is ease of, of use and, and it’s a, a fantastic way of being part of the community.

Alastair McEwin: Yeah, so I think there’s a lot, there’s absolutely a lot that we can, uh, do there.

So perhaps, Micheline leading on from, moving on from that in terms of more broadly, what do you think the outcome will be, both for people with disability and people without disability, of getting the NDIS right?

Micheline Lee: First of all, supports will be provided that actually responds to our capabilities and what we can actually use. At the same time NDIS will be seen as just one part of the solution and it will work in tandem with the removal of barriers in society. it’s important that, it will be people with disabilities leading the way on the changes and having their voices heard.

We’ll see disability and vulnerability becoming less stigmatised. This will make it better for everyone. The fear that people have of becoming dependent and losing their dignity or choice and control in life will be much reduced. Another vision is that there will be much more participation and inclusion.

Things like segregated living and schooling will be seen as a thing of the past. And disability will be seen as part of normal human variation.

Alastair McEwin: Thank you. And I think also, you know, that mind shift, perhaps also from government. You know, and I think, you know, 10 years ago when we reflect on when the NDIS was first being established. I heard constantly many politicians say, oh yes, the NDIS will solve everything, as I mentioned earlier. I think also we’ve got to really challenge, I think, that notion that, as you’ve just described, the NDIS should just be part of, you know, everything that’s happening in society, and not just the one thing for disabled people.

Micheline Lee: Yes, because that really does go back to the medical model of disability, doesn’t it, which is very entrenched in our society as seeing disability as an individual problem rather than society having to change to be more inclusive.

Hannah Orban: Micheline, as a last question, I mean, we would love to keep chatting to you, but I know we, we can’t chat for as many hours as I would love to, but if there was one thing you wanted readers to remember from your essay, what would it be?

Micheline Lee: I think that we so often have the right goals. But then when we create our designs and perform the implementation, we go back into old cultural ruts of thinking. what I really aimed for in my, essay was to, to, to challenge that old approach, and to bring some cultural change, I suppose.

The message that I wanted was embrace disability or vulnerability as part of being human, as part of you. Then open your eyes and feel outrage at how society excludes and disadvantages people who don’t fit into the narrow conception of able bodied norm. And now start building education, buildings, transport, social services and all our structures to be inclusive, especially for the most marginalized.

Hannah Orban: Thank you so much, Micheline, for joining us on the podcast to discuss your wonderful essay, Lifeboat, Disability, Humanity, and the NDIS, which is on Grattan’s Prime Minister’s reading list for 2023. Prime minister, if you’re listening, please read this essay.

It’s enlightening as it is moving. and Thanks to our listeners for joining us too.