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Living with a disability through the pandemic

Feb 25, 2021 • 16m 18s

For some people living with disabilities, the pandemic triggered feelings of being different and even dispensable. Micheline Lee on living through coronavirus, and what it revealed about Australia’s priorities.

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Living with a disability through the pandemic

404 • Feb 25, 2021

Living with a disability through the pandemic

RUBY:

From Schwartz Media, I’m Ruby Jones, this is 7am.

For some people living with disabilities, the pandemic triggered feelings of being different and even dispensable. Early signs of civic-mindedness gave way to selfishness and false dilemmas about health and the economy.

Today, Micheline Lee on living through coronavirus, and what it revealed about how Australia treats people living with disabilities.

RUBY:

Micheline, in your piece for The Monthly, you mentioned that the way that you began to feel out in public, particularly in areas where there are dogs, changed as the pandemic hit. I’m wondering if you can tell me a bit about that - about that vulnerability, if you’re happy to?

Micheline:

Oh, yes. So when I was going out for my walks, I use an electric wheelchair that can pick up quite a lot of speed. I have a joystick, and the harder you press the joystick, the faster you go. And I do speed around the place and dogs often chase me. Usually, I don't worry about it. I like dogs. I have a dog.

RUBY:

Micheline Lee is a lawyer and artist. She wrote about disability and the pandemic for The Monthly.

Micheline:

But during the pandemic, I think it was just that some of the anxiety I was feeling and some of the confusion about my own place and how to respond to the pandemic that was actually leaking out, I guess.

And I found that when I went to the off leash areas of parks that when dogs did bound up to me, I didn't have the same calm that I normally did I actually sped up, which of course, made the dogs just want to chase me more. For me, that was a sign that things weren't right. And I think it was triggering a lot of the things that I had absorbed when I was younger and which you hear a lot of people with disability say that often we absorb that kind of shame of being different. And it's as we become older and stronger and and realise some of the myths in society that we find our place.

RUBY:

And can you tell me a bit more about where that anxiety during the pandemic was coming from? What were you hearing in the way that people in Australia - in politics but also everyday people - were talking?

Micheline:

Yes. So the early part of the pandemic, I think there was two different responses.

Archival tape -- Unidentified Speaker:

“Their online brainstorming created corona care.”

Archival tape -- Unidentified Speaker:

“The idea is for us to get in front of people, hard copy stuff for the eldery who don’t go online…”

Micheline:

I saw some a lot of people uniting or working as a community

Archival tape -- Unidentified Speaker:

“It’s a way for people around the country to connect, who are looking to respond to the crisis with kindness…”

Micheline:

And, you know, talking about the strength of community and togetherness and getting through it together.

Archival tape -- Scott Morrison:

“We’re all Melbournians now, when it comes to the challenges we face. We’re all Victorians now.”

Micheline:

But I also saw more blatantly the other extreme of that attitude of every person for their own and, you know, the law of the jungle coming to the fore.

Archival tape -- Unidentified Reporter:

“A stampede of shoppers muscled through the doors of Docklands Costco, inside there’s barely room to move…”

Archival tape -- Unidentified Reporter:

“Well strict new purchasing restrictions haven’t stopped staples flying off the shelves with thousands of panicked shoppers swarming supermarkets right across the country…”

Micheline:

So I experience difficulties in and I know many other people with disabilities were unable to access, you know, all the masks, anaesthetises, even your basic groceries at one stage because it was really a first come, first serve situation where those who could, you know, got to the supermarkets first and cleared the benches.

Archival tape -- Unidentified Reporter:

“Pasta and pasta sauce gone. Flour and sugar in short supply. Along with tinned food and nappies.”

Archival tape -- Unidentified Speaker:

“Anything I can possibly get my hands on - two of it.”

Micheline:

So I started having these feelings about whether the commitment to equality was so superficial that we should be forgotten as soon as there's an emergency.

RUBY:

Mm and so while you were seeing those responses here in Australia, were you also watching news of what was happening overseas?

Micheline:

Yes. So the early part of the pandemic, I think there was a real anxiety spreading through our society because we were seeing images of people dropping dead on the streets overseas.

Archival tape -- Unidentified Reporter:

“Our next report is from inside Wuhan and the details are disturbing. An elderly man in his 60s was seen lying dead on the streets for at least two hours...”

Micheline:

And hospitals overrun.

Archival tape -- Unidentified Reporter:

“They’re fighting a war here and they’re losing.”

Archival tape -- Unidentified Speaker:

“I’m tired of walking into rooms and your patients are dead…”

Micheline:

And we're also hearing stories about like the disabled teenager in China.

Archival tape -- Unidentified Reporter:

“A 17-year-old boy who could not move independently because of his cerebral palsy has died after being left on his own for 6 days…”

Micheline:

Who was found dead after being left for six days because his father, who was his sole carer, was forced into hospital quarantine.

Archival tape -- Unidentified Reporter:

“Unable to get back to his son, his father used the social media platform Webo to plead with members of the public to help as he feared village officials were neglecting him.”

Micheline:

And during this period, we were hearing more of these false dilemmas being raised about saving the jobs or saving the old or the economy or health, keeping people who are more susceptible safe by having more restrictions or or risking more mental health issues. And even in Australia, I had people talking about or complaining about why should everyone have to be restricted because of a few old people.

Archival tape -- Unidentified Reporter:

“Sydney may not be in lockdown but many there claim Australia’s overreaction to the coronavirus had taken away their rights.”

Archival tape -- Unidentified Speaker:

“People just want to have their say and fight for their rights…”

Micheline:

And, you know, quite deliberately, too, there were calculations being made by countries about the extent that the lives of the aged and sick can be sacrificed in order to allow the virus to spread to achieve herd immunity.

Archival tape -- Unidentified Speaker:

“I think all countries, all epidemiologists will agree that herd immunity is the one thing that will eventually slow down the spread of this virus. Nothing else will slow it down in the long term. Either you reach it by people getting infected and people getting well again or people getting vaccinated and the vaccine is so far off...”

Micheline:

So there was that feeling of being dispensable, really. And I feel that it was triggering something in me where I was actually starting to question, you know, am I being selfish, you know, should I be more sacrificial? I was starting to feel guilty that because of people like me who were at high risk, that other people had to have the restrictions. But it was also just the offensiveness of hearing other people make those dichotomies.

RUBY:

We’ll be back in a moment.

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RUBY:

Micheline we’re talking about the false kind of dilemmas that people were talking about during the pandemic. This idea that it had to be the economy versus health for example. In your piece for The Monthly you had this other really interesting example of a false dichotomy - it related to air travel. Can you tell me about that?

Micheline:

So in my essay, I gave an example of a false dilemma that would constantly come up whenever I would fly in an aeroplane. So in nearly every situation I have a member of crew come up and talk me through the procedure if there's an emergency. So they'll say, you know, in the event of an emergency. You should just stay seated in your seat, wait till everybody else has left the plane and then one of the crew will come and get you.

Now, most of the time, I wouldn't say anything because it's just such a job getting onto the plane, making sure my wheelchairs and everything had come on the plane okay. But one time I did say something and about whether it was fair that I should have less chance of survival by having to come off last and the member of crew came back very tersely that the alternative was that I would block the aisle and everyone else would die.

But once I thought about that, it was really quite a false dilemma because it's not really a situation where it's about my survival or other survival, there's actually practical adjustments that can be made. And in fact, some airlines are making these adjustments that you sit the person with the mobility disability next to exits. You make sure that they're in a seat where the armrests come up so you have easier access out of the seat.

So that's an example of the kind of situations we create in our minds where we don't realise that there's actually like some unconscious bias there, so we've created situations where certain groups will miss out or be disadvantaged through, you know, the neglect in old persons’ homes, through the neglect in our hospital system, through the inadequate living conditions in our public housing. So there are actually things that can be done to address these situations. So it doesn't have to be groups pitted against each other for survival. And that society has the responsibility, not to just cater for a very narrow idea of society which, you know, the stereotypical, you know, male, able bodied, affluent, white and that it's not actually natural or the natural order that diversity isn't included.

RUBY:

And that's the kind of the outcome of this kind of thinking, that's the point you're making, that that it puts people against each other and that only benefits, I guess, the people who are at the very top of the hierarchy.

Micheline:

Yes. Yeah. And in my everyday life, I see it a lot. I say there were false dilemmas because it's not one or the other, you have to balance both. So, for example, that dilemma of economy or health, well we know from what we've seen as this Covid has played out, particularly overseas, that the economy will come to a standstill if Covid gets out of control.

RUBY:

And you wrote in your piece of The Monthly that some people in the disabled community are saying that now more than ever is the time in which to challenge that inequality. Can you tell me a bit about that, about why now might be a good time and why some of these issues are now becoming more visible than they were before the pandemic?

Micheline:

Yeah it really has highlighted the opportunities that people have and also the effects of a pandemic and that the outcomes are a lot worse for people who experience any disadvantage. And through that being highlighted, it gives us an opportunity to make sure that we're actually designing our resources, our structures, so that people have fair opportunities.

And I'm actually feeling quite optimistic about the awareness that that this pandemic has raised, because we only have to look at the societies that have put a value on looking after each other. No matter how strong or how vulnerable the person is and you look at how well these societies have performed in the pandemic, and then you look at the other countries that have been more hierarchical and the chaos that has ensued. And I think it's made it much more clear to us which society we want to be.

RUBY:

Micheline, thanks for your time today.

Micheline:

Thank you.

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RUBY:

Also in the news today...

The Federal Defence Minister Linda Reynolds has taken medical leave and been admitted to hospital, in relation to a pre-existing medical condition. She was due to appear at the National Press Club yesterday, where she was expected to face questions about her handling of sexual assault allegations made by her former staffer, Brittany Higgins.

And New South Wales has announced a further easing of coronavirus restrictions, after the state recorded its 38th day in a row with no community transmission. From Friday, New South Wales residents will be allowed up to 50 people at their home.

I’m Ruby Jones, this is 7am, see you tomorrow.

For some people living with disabilities, the pandemic triggered feelings of being different and even dispensable. Micheline Lee on living through coronavirus, and what it revealed about Australia’s priorities.

Guest: Writer for The Monthly Micheline Lee.

Background reading:

Nightclubs, pandemics and our real selves in The Monthly.

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7am is a daily show from The Monthly and The Saturday Paper. It’s produced by Ruby Schwartz, Atticus Bastow, Michelle Macklem, and Cinnamon Nippard.

Elle Marsh is our features and field producer, in a position supported by the Judith Neilson Institute for Journalism and Ideas.

Brian Campeau mixes the show. Our editor is Osman Faruqi. Erik Jensen is our editor-in-chief. Our theme music is by Ned Beckley and Josh Hogan of Envelope Audio.

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404: Living with a disability through the pandemic