The cost of COVID

Kurt Fearnley: We've produced this podcast on Awabakal Land and we've spoken to people living and working on Aboriginal land across Australia. We pay our respects to the elders, past and present.

Kurt Fearnley: Hi I'm Kurt Fearnley, Paralympian and proud person with a disability.

Sarah Shands: And I'm Sarah Shands, Mum of a beach loving kid with a disability

Gillian: I just love the waves and I can't wait to surf. Can we go now?

Kurt Fearnley: Hold on there! We have a podcast to make.

Sarah Shands: The last two and a half years eh?

Kurt Fearnley: Yep, they've been a lot. Remember when we were all in it together?

Sarah Shands: Yeah — It's hard to believe that was less than 3 years ago — It definitely feels longer than that. But at the same time, in under 3 years scientists have managed to developed multiple vaccines and effective treatments for this disease.

Kurt Fearnley: So while most Australians are back to their pre-pandemic life of coffee with friends, dinners out and holidays, there is part of the community still in isolation.

Thousands of Aussies with chronic illness and disability remain at home because even with the vaccinations, boosters and all the medical treatment in the world if they caught COVID, they could become very sick; maybe even die.

This is the reality that El Gibbs wakes up to every morning. Her medical team have warned her that if she caught COVID it would be very bad for her. In November and December 2021, she wrote a quarterly essay for Meanjin about how COVID has changed her life.

El Gibbs: I often talk about that essay, like it cracked open the feelings box. And so I wrote a lot of it at like five o'clock in the morning. I was very busy when I was commissioned to write that essay. And I would get up early, and I make a coffee. And I put on very loud music and write. I think that it was the first time that I really thought about the impact of the previous 18 months. And I had spent most of the time during COVID Just working really hard And almost pretending like it wasn't happening to me, or not acknowledging how difficult it was for me. So to actually turn around and write about my own experience. It's not something I usually do, and it was very challenging to do. One of the things that happened when I was writing that essay was that a lot of disabled people, particularly younger disabled people would say to me that you were writing about how I felt. So I know the way I was feeling was the same way lots of disabled people were feeling. These conversations were common in my community but we don't have them out loud any more because no one wants to hear them. No one wants to hear from us Anyway, I'll read bits and we'll see how we go:

"The pandemic has been a brutal reminder that disabled people don't matter. Living through this, as a disabled person with a very wonky immune system, has been a reminder that my life doesn't matter to most.

Where I do matter is in my disability community, the community of folks at such risk of this deadly disease who have rallied and worked together to protect ourselves. After two years of the pandemic, of the lockdowns, of the forgetting and the ignoring and the gut-wrenching fear, my nerves are sanded raw, jangling now at the slightest breeze of change. A new variant is announced, restrictions for me creep back in, and I'm left to wonder if this is how it will be from now on. No more music, no more crowds, no more indoor anything really, and no more footy. For the rest of my life.

I lived in two worlds during COVID. One that suddenly got more open and inclusive, where I was asked to talk at events, on television, to Senate committees. I pasted lipstick on, and calmed my frizzy hair, adjusting a badly fitting shirt, so I could tell the world that disabled people needed help. Then I would scrub it all off, limp to the kitchen and face the anxiety swarm about there being no food.

Non-disabled people talked about how hard being in lockdown was, how much they missed seeing people, how difficult they were finding being on screen all day. This was my life they were talking about, my exact life. I wavered between anger at their thoughtlessness and ignorance of disabled people's lives, but also a sinking realisation that yes, my life is hard."

Kurt Fearnley: The pandemic has been truly devastating for the disability community. For my community.

Sarah Shands: It has been devastating Kurt, And one of the biggest issues for people with disability has been the shortage of disability support workers. Before the pandemic hit, it was bad. And now, it's at a crisis point. Carl Thompson is the Director of Sort Your Support, and shares what it's like to be left without a Disability Support Worker.

Carl Thompson: I always hear the gate open and, and then my dog often starts barking so that's a good, a good sign that someone's there. And then they let themselves in. Normally my partner will be gone by that point because she goes to work earlier than me. If there's no support worker around it will be a bit of a surreal feeling. The hours are ticking along and then I might eventually check my phone and realise that it's, you know, quite late and then, I would have had a message on my phone, someone's saying, you know, Carl, I've got a positive test result. I can't come in. I'm so sorry and then I have to scramble to find someone. And if I don't have anyone come In I can't so much other than sit in my bed and play on my phone.

I've had mornings where it's taken me hours and hours and hours to try and find somebody to come in and help. And that had meant that, you know, have to, you know, really hold on, you know, going to the bathroom, you know, doing some close calls, nearly having to, you know, wet the bed and things like that.

It's still quite, quite scary and quite lonely, kind of just sitting there, you know, being at the mercy of waiting for someone to be available.

Sarah Shands: Change is desperately needed. But it's not going to be easy. A recent Parliamentary Report into the NDIS Workforce found the sector was facing a shortfall and needed to grow by an astonishing 83,000 staff in the next two years to keep up with demand.

Kurt Fearnley: The new minister for the NDIS, Bill Shorten is aware of this issue and convened a NDIS Jobs and Skills Forum to talk about what's needed to deal with it. He's on the record in a recent ABC article saying:

"The government was committed to increasing the number of workers in the disability care sector to support participants to live the life they chose."

Sarah Shands: The impact that COVID has had on people with disability is so wide ranging. Vaccines and antivirals have been game changers — giving most people a good chance of surviving the disease. But we are now living in a time where there are very few public health measures in place to prevent the spread of COVID. So for many people with chronic illness and disability it means that there is a real risk of catching COVID. Professor Nancy Baxter is the head of the Melbourne School of population and global health at University of Melbourne and thinks more can be done to make our community safer.

Dr Nancy Baxter: We need to say, we understand this, we have taken away protections in society that we know protected you. So we need to make sure that you have access to the best possible prevention of serious disease. So that would be making sure we inform and provide ready access of disabled people to all the boosters. And also to make sure there's ready access to to antivirals, so that if a disabled person is eligible for antivirals, and gets COVID, that they you know, have a script in hand or script at their pharmacy, and the drugs kind of on their way to them as soon as possible so that there aren't people with disability that are missing out on that. And also that we make sure that workers that work with people with disability, you don't have access to things like n95 masks, know how to use them have paid sick leave so that if they have COVID, they don't have to make that decision about exposing person with disability versus feeding their family and that they're still supported testing. I get that the world has moved on. But if the world has moved on, they should be prepared to invest in those individuals who are most at risk, actually having something tangible that helps them through this.

Sarah Shands: And Dr Jodie McVernon, of the Doherty Institute agrees.

Prof Jodie McVernon: I think that's one of the things that COVID taught us was that we'd all got pretty lacs, about really basic things like hand hygiene, you know, with sort of lapstone workplace cultures about people going to work when they're sick, and those sorts of things. And really, you know, I think we've got a clearer sense of our collective responsibility. And our personal efficacy to protect ourselves from infections through some fairly simple behaviours really to to distance ourselves from people who are sick when appropriate, but also, you know, how we can reduce our likelihood of contracting infection. And, you know, obviously, mask wearing is another adjunct to that, that can help to reduce an individual's risk of becoming infected, or someone who is infected passing on if there are people that they need to see.

Sarah Shands: So what's needed is a real culture shift where it's okay to stay home if you're sick.

Kurt Fearnley: But more than that we need workplaces to see that people can work from home and be productive members of the team

Jodie McVernon: I think people had an opportunity to prove themselves. So I do think there's much greater room for negotiation and that that should continue to be an aspect of workplace cultures. I know, as a parent who works, I've always been happiest and most productive when I don't feel a conflict between those elements of my life. And obviously self care is critical for both mental and physical health needs for people to be productive in the workplace.

Sarah Shands: As Jodie McVernon says — we've had the forced experiment — people can be trusted to work from home. So it just seems ridiculous that people are fighting to be allowed to continue doing this. Emma Henningsen works at the Australian Network on Disability.

Emma Henningsen: And I speak as a woman with disability as well. So I speak from personal experience for years, we were told that wasn't an option, we were told it was untenable. And ultimately, it was found that as soon as everybody needed to do it, that we all kind of worked out how to do it. I think businesses in terms of maintaining their inclusion and maintaining their kind of diversity and supporting people with disability just need to remember that we've had the capacity to provide adjustments. They're not actually that big of a leap for organisations to provide and that people with disability have the right to access adjustments to complete the essential requirements of their role.

Sarah Shands: What an amazing opportunity we have right now. To not take the easy road and go back to the good old days of slogging it out at the office with a couple of cold and flu tablets on board. And this kind of cultural change will be a step in the right direction for creating a more inclusive society. But as El Gibbs points out that's not the direction we're heading.

El Gibbs: It just feels very difficult when we're increasingly having in person events to talk about disability. You know, I was talking with one of the people that I'm working with about A potential in person event in a few weeks time in Canberra. And you know, we've talked about how to make it safe for me. Because it's an important event for me but yet, there is no online option.

Kurt Fearnley: As Australia opens up and restrictions are decreasing, community transmission will also likely increase. So what does this mean for people with disabilities?

Sarah Shands: Well there's an inquiry underway, being chaired by Dr Mike Freelander an MP who spent many years working as paediatrician.

Dr Mike Freelander MP: One of the things I'm interested in if people with disabilities are more likely to have COVID and long COVID. And if they are any protective mechanisms we could put in place that might help them get out into the community rather than stay cocooned at home.

Kurt Fearnley: With Covid here to stay this inquiry will look at what measures can be put in place to protect people that are at higher risk of becoming extremely sick or even dying from COVID. So Mike, what kinds of measures are you looking into?

Dr Mike Freelander MP: I'm convinced there are things we can do. And that may range from things like improving air quality and in workplaces to maybe there's some areas where we should be wearing masks to protect people who have risk factors. In healthcare more hospital in the home ambulatory care type services, taking pressure off our hospital emergencies where lots of people gather, who have infections, you know, all those sort of things can help. And I'm sure there are some quite systemic ways we can we can manage this better. And the purpose of our inquiry is to actually give that advice to the government.

Kurt Fearnley: Without preempting the committee's findings what kinds of measures are you looking at?

Mike Freelander MP: So I think it's really important that we look at the at risk groups and see what we can do to protect them and in deed we know some of them, people with disability but also people that may be immunocompromised. I don't want to tell people to isolate more and more . I don't thinks that's a good thing for people mental health.

Sarah Shands: So in this time of COVID let's not lose sight of the why. Why do we want to create a community that all people can safely live, work and engage in? Emma Henningsen reckons it benefits everyone.

Emma Henningsen: You want a diverse workforce, because you get diversity of thinking you get diversity of knowledge and experience. And people with disability come with incredible experience, incredible knowledge,incredible abilities and resilience. And you want us on your team! You want us there! Because ultimately you want us at the table so that we can create change within your organisation. If these last two years have taught us nothing, it's that organisations have the capacity to to switch everything around if they need to.

Kurt Fearnley: For years people with disability have been campinging, requesting, demanding flexible work arrangements. And we've been told time and time again — it can't be done — it's too hard. But the pandemic showed that it can be done. So let's not fall back into old habits. Let's take the things we've learnt over the past few years and do better.

Sarah Shands: Well that brings us to the end of the first series of Let Us In. Kurt, what do you reckon, where are we at with disability in Australia today?

Kurt Fearnley: We've made some huge leaps forward with housing policy — most new builds from 2023 will be way more accessible. But we still have a segregated education system and there are near daily stories of discrimination by airlines and airports towards people with disability. So, while we're making progress, there is still a really long way to go in some key areas.

Sarah Shands: One thing I found remarkable about talking with people from the disability community about all of the different issues that we've covered in this first season, was the esteem that they hold past advocates and activists in, I think the phrase that I heard time and time again, was were standing on the shoulders of giants. And that to me, shows just how this community takes its history seriously, and wants to celebrate and acknowledge all of the hard work that has been done up until this point.

Kurt Fearnley: I love that about the community, I think that is actually born out of the community, only fighting the battles on their own, like out of that isolation has been bought this really, really warm culture that just respect all the battles that have happened in the past because also, we know that there are plenty battles to happen in the future. I want to thank everyone that has helped shape this podcast and also thanks for listening to the battles and thanks for being a part of the next one.

Sarah Shands: Keep an eye out for the Auslan versions of Let Us In. That should be out later this year.

Kurt Fearnley: This podcast has been produced with the support of the Melbourne Disability Institute and the University of Melbourne. The Executive Producer is Sarah Shands of Point 5 Productions.

Sarah Shands: That's me.

Kurt Fearnley: fact checking by Lisa Herbert. Big thanks to Blythe Moore, Phill Ashley Brown, Simon Scoble and Nicole Bond. Sound Engineer is the brilliant Grant Wolter.