Podcast: Rethinking Sick Leave

Steph: Hello and welcome to Rally, a multimedia mag on a mission. In this episode, we're taking a critical look at Australia's current sick leave policy, and how people with chronic illness and disability have to work within a system that wasn't built for them.
We’ll hear some stories from those who have experienced the consequences first hand:
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“...and I fainted on the floor and I went and told my manager and they said “Oh, you know, go home”. And I didn't get any shifts after that.”

As well as stories from workplaces that have actually made adjustments to suit their employees’ health needs:
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“...in the meantime, they installed an umbrella that you would have in an outdoor café above my desk, so that I was able to sit and work without getting light migraines”

We’ll learn from those campaigning for better policies:
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“We want a minimum of five days paid leave for employees who experience reproductive health matters. We know five days isn't going to change the world but we think it's a start"And get advice for those who still have to work with a disability or illness while we wait for these policy changes:
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“And that would be my advice: if you feel safe, do invest that time because I think having a manager that understands and is supportive can actually be pretty career changing.”

--end cold open

Hi I'm Steph, one of the editors at rally magazine.
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The podcast you'll be listening to today was recorded on the lands of the Wurudjeri and Bunurong people of the Kulin nation. We acknowledge them as traditional owners, paying our respects to elders past and present and recognise that sovereignty was never ceded.

Welcome to our very first podcast episode.
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I have to say that I had a lot of fun with this topic. After speaking with some really intelligent and thoughtful people that you’ll get to hear later on the podcast, I’ve walked away with insights and learnings that I just know I’ll carry throughout my working life. And I really hope these perspectives have the same impact on you.

We’ve heard a lot lately, discussions around menstrual leave. And the importance of these life-changing benefits psychologically and also economically. And while it’s an incredible step forward for people with periods, it opens us up to a conversation around sick leave alternatives that accommodate for more than just menstruation.

According to the Australian Bureau of Statistics, in 2021, 47 percent of Australians were estimated to be living with at least one chronic condition. Which means that nearly half of the population needs support beyond the current model of sick leave.
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-- end intro

Steph: So to begin, let’s better understand the current legal working rights here in Australia in relation to accessing sick leave. I sat down with Leon Harper, a solicitor at Young Workers Centre. Leon, why don’t you start just by telling me a bit about yourself and your professional background, and what are the current employee sick leave entitlements at a national level.

Leon: My name is Leon. I'm a solicitor at Young Workers Centre, we’re a community legal centre that specialises in employment law, advice and representation to young people in Victoria. So we do a lot of work around workplace safety, both physical and psychosocial hazards, as well as a lot around harassment, discrimination, including disability discrimination.

Under the national employment standards, which is the baseline safety net that applies to most workers in Australia, its [that] permanent full time employees are entitled to 10 days pro-rata paid sick leave - so that accrues over the course of the year. If you're part time, then it'll accrue at the base of your part time. So if you're doing four days a week, then effectively, the mathematical breakdown is eight point four [days] or something like that. If you're casual, you're not entitled to any paid sick leave at all.

The baseline that applies to most people is really extremely limited. Employers can ask for evidence if you're going to take paid sick leave. My experience is that most employers interpret this as that they have to ask for evidence every single time and they'll be very inflexible about that.

So I think a lot of people with chronic illness will have had the great experience of rocking up to [their] closest drop-in medical centre everyday to get a new medical certificate for the flare-up that [their] having. Especially if you're not fortunate enough to have a good GP, which is also really difficult because a lot of GP's who will be willing to give longer medical certificates will not be bulk billing. So there also ends up being an element of socioeconomic injustice as well.

In my experience, my GP isn't bulk billing and for a long time when I was studying and sort of living on Centrelink, a good chunk of my income was just going towards being able to pay for sessions with her, which is a terrible position for someone to be put in. The ten days pro-rata paid sick leave is really low for anyone.

Covid really laid bare how limited even the standard sick leave entitlements that we have. Employers can allow you to take additional periods of unpaid sick leave. But as well as being unpaid, this can be potentially destructive both to your place in the workplace and even legally your entitlements. There was recently a (in my opinion) terrible decision by the Fair Work Commission about cases of unfair dismissal, [which] has a minimum employment period of six months. This decision said very clearly that periods of unpaid sick leave didn't count towards that six months. So this was a person who I think had been working somewhere for about six and a half months, but in the middle had taken a period of unpaid sick leave and they were therefore deemed ineligible for unfair dismissal because of that unpaid sick leave. So it has a lot of really terrible follow on effects. Yeah, I think that the minimum protections that we have, they're better than some countries, but they're really not fit for purpose.
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Steph: I also spoke to Amity Mara, a lawyer and social justice campaigner who speaks to her own experiences with the shortcomings of our sick leave systems, and people’s attitudes when it comes to managing work and wellbeing with a chronic illness. As Amity explains, our current systems really only exist to support acute illness.

Amity: My name's Amity, she/her pronouns. My background here comes at it from two different angles: being neurodivergent and autistic myself, but also having chronic illness. I have a ‘lived experience’ investment, I guess, in this issue. But also I, in a previous part of my professional career, was an employment lawyer.

Sick leave at the moment is kind of built around acute sickness. It's often post-fact, [i.e] you are sick and so you have the sick leave. Whereas often the best way to manage chronic illness, or to manage ongoing mental health conditions and stuff like that, is pre-emptive days, right?

Let's say it's mental health and you feel yourself sort of on the edge and you're tinkering, it’s [saying] “Okay, I'm actually gonna take a pre-emptive mental health day and I'm going to go on a bushwalk because that's something that really gets me out of my head, and eases my anxiety or eases my depression”, or whatever it is.

And I think at the moment there's a lot of shame and stigma almost around taking pre-emptive days. And when you only have 10 days, you can't really afford to do that in most cases. It's the same with chronic illness, right? For me, there are signs that I'm going to have a flare-up that I will notice. And if at that point I can [say] “Well, my pain level at this point is [at a] zero. But actually, I know that taking a day off work [and] curling up with hot chocolate and just lying in front of the TV is actually going to be really helpful, and it’ll mean that in two days my pain is not going to be [at a] seven”.

But if I just work through because at the moment I am ‘fine’, in two days' time I know I am going to be really bad. And I think basically that this also allows for us to pre-emptively take care of our bodies in a much bigger way that I think is particularly relevant for chronic illnesses and chronic conditions, because a lot of it is management rather than just dealing with a flare-up once it's already happened.

Steph: So we’ve recognised that there are some shortcomings in the current model of leave – 10 paid sick days per year for full time employees which really just focuses on acute illness – for example, you catch Covid or the flu. And if you’re a parent then you also need to consider carer’s leave in those 10 days when your children will inevitably be sick.

So I want to delve a little deeper and talk to people that have experienced first-hand the challenges with managing their health and work under these policies. Let’s first hear from Róisín McGee and her experience with endometriosis

Steph: What has been your experience both in the past and currently with managing your health with invisible illness and continuing to work as well.

Róisín: When I was diagnosed with Endo, that was at 21. At that stage, I had already had it for many years but unknowingly. And I had been getting migraines and I had issues as a teenager where I used to faint a lot. And I was working a retail job and I fainted on the floor - and I was a casual - and I went and told my manager and they said “Oh, you know, go home”. And I didn't get any shifts after that. I just, I was never put on the roster again. That was a casual job while I was in high school, so it hurt my feelings, but I wasn't going to be really struggling because I wasn't relying on that to survive. But for so many people, if you get taken off a roster unceremoniously like that, your entire life would just flip upside down.
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Steph: Finding an employer that is understanding and accommodating of your illness or a disability is pretty hard to come by. And as Leon shares, it’s additionally challenging to find a job with hours and physical demands that won’t render you even sicker than before.

Leon: I also have lived experience of disability and chronic illness. So I have fibromyalgia, which is a lovely chronic condition which really limits my ability to go outside and participate in society as much as I'd like to. I've been sick since probably  11 or 12.

Entering the workforce was similarly really difficult for me. My first couple of jobs were working at Woolworths and then working in an office. And in both cases I actually really enjoyed the work, but I was just physically wrecked by the process of having to go out, commute to work, be in an office, and have this incredible sensory overload for all this time.

I think also on a logistical level, a  lot of employers don't understand. In some ways it's probably improved with the pandemic, though for me it's probably also improved as I've gotten older and I'm not looked at as a whiny kid as much anymore. For me, there's also an interesting element, so I'm transgender. I transitioned midway through my law degree. So most of the jobs that I've done since qualifying as a lawyer I have presented as male. But prior to that, when I was presenting as female, there's definitely a gendered element around the way that people treat you if you have an invisible disability. I was definitely looked at as ‘a weak little girl’ essentially, or just whiny or not able to take it. I constantly got asked in retail jobs where I was working if I was just on my period or something like that, and that's why I was ‘having a sook’. Which is just terrible and obviously not questions that are generally given to male-presenting people.

I mean, that said, I'm sure if I had grown up male-presenting, there would be all sorts of elements of toxic masculinity that would have made it really difficult too. But anything like this is really intersectional. There's particular gendered impacts on women. And I'm sure that there will be particular impacts on people of colour as well that I, as a white person, am not being subjected to like that. Depending on the power that you have or that you're perceived to have, your pain and your experience is more or less legitimate.

Steph: As with everything, it all gets even harder when we consider intersectional experiences. Amity, who has already spoken to her identity as neurodivergent, is also a trans Tamil woman from Sri Lanka and shares more of her experience of power dynamics in the workplace.

Amity: I think I've had a mix of experiences, both good and bad. Early in my career, I think it was much harder to have those conversations, like when you’re junior [and] you're trying to prove yourself. Particularly for me, I'm a brown trans woman and [there’s] the adage of “when you're a brown woman, you have to be twice as smart and do twice as much work”. When you're brown and trans, that's maybe about seven times as much.

Steph: And that’s math! (They laugh.)

Amity: The power dynamics that played out in the early points of my career, not only by being junior but also because of points of identity, meant that a lot of those conversations were really hard to have. And I was often stuck in this cycle [where] I would do really well for 18 months in a job, and then I would get pretty severe autistic burnout. There was often very poor literacy and understanding in organisations of what autistic burnout is, which I think also goes to that power dynamic point, right? That there are certain issues that people will have a better understanding of than others, and it's often the more mainstream ones where people, institutions or employers are likely to be more lenient [with] than others. And so I found, yeah, particularly early in my career, having conversations around autistic burnout was really challenging.

And a lot of [the response was] “Oh, you're just tired. Like, take a day off and then you'll be fine”. And well, that’s not quite going to work – if I am working a full day and then having to go sit in the dark room for the rest of the evening before I go to bed, that's not manageable. And that was the stage I got to a couple of times.

So I got into this cycle: I burn out, then quit my job, have a couple of months off and then get a new job and [I’d] start all over again. But as that bad cycle continued, at certain points I started getting promoted, I started getting more recognition, I started getting a bit more institutionalised power within organisations. As I moved up the ranks, I was then much more able to have conversations around what I needed, [I] was much more able to set my own deadlines. Once you’re a manager and you're in charge of your deadlines and you can move things around a lot more, it's a lot easier.

I was one of the many people who, after the initial couple of lockdowns in the pandemic, [said] “Okay, I'm quitting my job, I'm doing consulting. This is terrible. I need more than four weeks annual leave and two weeks personal leave. I'm going to take jobs when I feel like working, have that flexibility, [and] work on the hours that make sense for me and my body”.

And honestly, it just changed my life. I've done consulting at various points in my career, but I think doing it with the intentionality of not using it to progress my career or necessarily doing it to make the most amount of money I could, but [instead] actually doing it with the intentionality of being able to restructure and reclaim my time for it to suit how my body and my brain works. Yeah, it was just the best decision I've ever made, really.

Steph: I’m so happy to hear that that just clicked into place for you.

Amity: Totally, and I think it’s funny in a slightly depressing way that it took a global pandemic for me and lots of other people to choose ourselves and to put ourselves first. But it’s really great to see that lots of people got there, and are getting there.

Steph: I think hearing these first-hand experiences from people just trying to manage their illnesses and disabilities, it’s pretty clear our current workplace model is failing to meet the diverse needs of its employees. And while that might feel less than inspiring,  I wanted to shift now to organisations who are doing things better. So we’re not talking about the bare minimum 10 paid sick leave days. Instead, what other models can better support employees and also benefit business.

I spoke with Kate Marshall, the Assistant State Secretary of the Health and Community Services Union, also known as HACSU, on their advocacy work with organisations within that sector as well as the entitlements they’ve included in their internal policies.

Kate:  We represent people in Victoria who work in the disability space or the mental health space. Given that they are caring industries, we are predominantly a female dominated union, so I think there's over 70% of our members are female. And really it's something that has come up prior to Covid actually where we were hearing from women who were using their personal leave (or sick leave, in the old terms) to care for children or parents, then had no sick leave for themselves when they actually needed it. And I think Covid was one of those things that exacerbated it even further.

We had women telling us that they were suffering from conditions like endometriosis, polycystic ovary syndrome, [people] going through menopause and experiencing extreme night sweats, not sleeping, extreme menstrual pain for no apparent reason other than that’s just how their menstrual cycle works, people going through IVF. All these people were taking leave without pay, or sucking it up and working through the pain that they were experiencing. What we wanted to do with this clause that we've written and we're really pushing into employment agreements (and we really, really want to make government policy as well), is levelling the playing field for women by introducing extra leave days when it comes to these sorts of matters around reproductive health.Or flexible working arrangements where you're able to say “I didn't sleep because I had a massive night sweat, I'm going to start a couple of hours later so I don't come to work with fatigue, and I don't make mistakes”. So we really want to bring awareness and break down those silos [around] conversations on things like fertility, menstruation, menopause [and other] taboo subjects.

What our policy is, is that we want a minimum of five days paid leave for employees experiencing reproductive health matters. And this is for the purpose of recovering from an episode that they're having, attending speciality appointments or getting treatments and the like. We know that five days isn't going to change the world (we really didn't want to scare the horses), but we think it's a start.

And also having the flexible working arrangements there so that people can come in late or have access to an air conditioner, or have a longer lunch break and work later on in the night, whatever may work. But having that conversation be open, that they need those flexible working arrangements and what that may look like, because that will look different for everyone.

Around pregnancy loss, what we've looked at is that after 20 weeks you get special parental leave, but if you lose a pregnancy at 19 weeks and 6 days, there's nothing there for you. So what we really wanted to do was put in some policies or clauses that look at when an employee loses a pregnancy between one and ten weeks that they're entitled to five days of paid pregnancy loss leave as well as their partner. But if they lose a pregnancy between 10 weeks and 19 weeks and 6 days, they get 10 days of pregnancy loss leave. And the reason for that is obviously that the pregnancy is further developed along the line, and it may need medical intervention to assist a miscarriage or have a termination. The pregnancy loss leave has been far more accepted by employers. I think because it's a lot harder to say no because there is actually something physical they can see, and a loss that's been felt. The reproductive health and wellbeing leave has been harder to get across the line.

Steph: Such an interesting point, [that] it’s easier to onboard people for the pregnancy loss policy because it is something that is physical. Whereas something that people can’t see - which is I imagine so true of anyone living with an invisible illness, chronic illness, invisible disability trying to explain to someone something that they can’t see and even pain that is not acute - it’s just interesting that if it’s not your experience, it’s challenging for people to connect with that and a bit harder to onboard people.

Kate: We're hearing the same excuses that we were hearing around family and domestic violence leave when that was first introduced – that it's going to be expensive and people are going to take advantage of it. It hasn't been expensive and in fact, it's the opposite. People who are entitled to take family and domestic violence leave haven't been taking it, it has not been taken advantage of. And we actually think the same thing will happen with reproductive health and wellbeing. It'll take a while before it picks up and people feel comfortable really using it. But I just think it's of the utmost importance that it does become a staple in employment contracts. And I would love for it to become a state or national policy where this is put in, because I think it's about time that we stop shaming women's bodies for what they do naturally.

We're talking about reproductive or chronic illnesses to do with reproductive health, but the same goes with other, as you say, invisible disabilities and mental health conditions as well.  You don't necessarily want a day off, but you need to admit to yourself that you need a day off. There is a lot of evidence out there, there is a lot of research particularly in the mental health space, about why having time off is important and having a day off here would mean that you are less likely to have 10 days off in a year’s time when things really hit a breaking point. I think approaching it early and making sure that you talk to your employer and let them know that this is the reason why you need the time off, and actually that it’s a benefit to them [if you] take the time off now [is crucial].

Or even if you don't want to take the time off [it’s important] to have the capacity as we were speaking about before. Throughout Covid we've learned that many people can work from home, and having that flexibility to be able to be in your own comfortable space and continue to work from home if necessary. But I also think it's important that if you don't feel comfortable going in and speaking to an employer by yourself, you bring a representative, you bring a support person with you.

Because I think sometimes a lot of people can be, quite rightly especially with mental health conditions, very consumed by what they are going through. And having that space and that someone next to you who is able to bring the conversation back to the room [helps], I guess.

I think that opens the door for silos to be broken down across all invisible disabilities and invisible conditions, to be able to have that conversation, that open and honest conversation. It allows the employer to actually understand what's going on. And maybe they didn't realise what was going on and maybe can do something in your workplace to make things more comfortable, [like] negotiate or working from home arrangement or shift rosters around, whatever it may be, to help that person feel comfortable in the workplace and stay in the workplace longer.
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Steph: Introducing alternative sick leave models is just one of the solutions to becoming a more inclusive workplace. It’s also important to acknowledge that those extra days of paid sick leave are just as beneficial as flexible working arrangements and open communication about what each employee really needs.  

Róisín, who you heard from earlier, is actually another employee at HACSU working as their Media and Communications Officer. So you’ll get to hear her first-hand experience with their inclusive sick leave policy.

Róisín: When I was diagnosed with endometriosis when I was twenty-one, I was working a part-time job alongside uni. I was working two or three days a week depending on my timetable during the semester. Despite my endo story, and getting to that point of diagnosis, being quite stereotypical, my experience of the workplace wasn't stereotypical in that [they were] so incredibly supportive. I was part-time, so I would have only been entitled to six or eight sick days in a year. So I had used up that sick leave and had gotten to the point where a couple of months after my surgery and diagnosis, the pain had actually gotten worse. I ended up taking something like a week or two of sick leave and I just put it in as unpaid leave because I figured I'm out of sick leave. But our payroll manager noticed I had gone in for unpaid sick leave.

She spoke to my direct manager and together they went to the CEO and said “Hey, Róisín’s going through this. We know she's had the surgery [and] we have precedent where we've given additional sick leave to people in this situation and we think that we should give her some additional leave”. And they gave me all that unpaid leave that I had taken, they paid me back for that, and then they topped up my sick leave to make sure that I would be able to take it if I needed it going forward. I think I nearly cried when they told me they'd done that because I felt so supported.

As a result, I also did way better in that job than I would have otherwise because I wasn't forcing myself to come in when I was really unwell, I wasn't stressing out about it. When you stress out, if you've got something like chronic pain, you stress, you tense [and] the pain gets worse. It's a whole negative spiral. So I think knowing that I was supported made me a better employee because I wasn't sitting there stressing about it in the back of my head. I wasn’t worrying about my bills. I knew that when I was at work I could just do my job. And as a result, I did great – I was able to do good work, I was able to be happy with the work I was doing.

[This] can also be a source of guilt for a lot of people with chronic illness, if you're not being as productive as you think you're meant to be. Even if you're not getting pulled up on it by anyone else, even if you're meeting your job description, if you're someone who wants to do better and you can't do it, it's frustrating. I think you can feel quite guilty and feel like you're letting others down. So knowing you’re supported helps you manage your health better, helps you manage your finances better, and it helps you actually be a better colleague and a better employee.

Working at HACSU, we’ve got the campaign for reproductive health and wellbeing leave (five days a year for reproductive health issues). What I’ve found is that since I’ve started working at HACSU, I’ve actually taken less sick leave than I have at previous jobs. I was actually going through some files the other day and I was comparing different jobs I've had. I've been really lucky in that my last few jobs have all been incredibly supportive, they've all supported me to take sick leave. But at HACSU, I’ve got access to that leave but I’ve also got access to flexible workplace arrangements. And I think those are so incredibly key, because if you have to be in the office at 8.30am, and you wake up at 6am with excruciating pain and you can't move, you're not going to be on time. But if you know that “Okay, I can go back to sleep for an hour, I can do some stretches, I can use heat, I can do what I need to get through this and I can be in for 10 o’clock. Then, I can just work a little bit later and it all balances out”. Whereas when I've been somewhere where [the mindset was] ‘you're in or you're not in’, or if you're taking sick leave it’s basically for the day as opposed to taking an hour or two of sick leave and just working a slightly shorter day. When you wake up, you're not just dealing with the pain or the flare or whatever is happening. You're also dealing with the stress of thinking “Okay, should I call my manager? Should I call in sick? How long can I call in sick for? How long would it take me to get to work? Maybe if I got a taxi instead of getting the tram, then that would maybe help the pain”.

If you know it's okay to be a little bit late, it allows you to actually think about your health and not just how you are going to get to work on time. So as a result of that flexibility, I've taken so much less leave. And other people in the office have flexible working arrangements, too. And when that's just the standard, it’s better for me as an individual worker, it's better for my managers because I'm doing better work. I'm not trying to force myself to come to work when I can barely think straight. If [I’ve] got a migraine, I literally can't see. I do design work, if I can't see, I can't do my job, it's not practical for me to be in the office, and it’s actually ridiculous for me to try and force myself to come in. But it's also better for my co-workers because it means when I am in the office, when I am in meetings with them, I'm actually engaging properly and I'm able to concentrate on that. It gives you a better work-life balance because when you're at work, you think about work. When you're at home, you think about home, you’re not stressing about getting to work on time. And when you’re at work, you’re not thinking in the back of your head “Oh, I’ve got this going on, I’m trying to deal with this”, or you’re not getting distracted by symptoms. I think that’s really key, access to flexible work arrangements is so important.

Steph: We love hearing about workplaces going above and beyond to support their employees. Leon also shares the more hopeful side of his experience.

Leon: I'm also now at a very supportive workplace who are very understanding about my medical issues, but it's been really challenging. And even as a lawyer, I know that it would be very difficult for me to, say, go into a law firm environment where people might be working 60, 70 hours a week and have to be in the firm at all times. For me, as with other people who've had these kinds of illnesses, the real silver lining of lockdown and Covid was actually work[ing] from home being much more normalised. That's been a life changer for me. I was never able to work full time before, and now I'm able to work full time because I do three days in the office and then two days at home. And that's enough for me to be able to look after myself, but also be able to get that really valuable time in the office with my colleagues.

I've been really fortunate to have, especially in my current role, a really supportive, immediate manager who has always really gone to bat for me, for any sort of issue that I've had, whether it's needing to work from home or other adjustments. I've found something that's really helped me is working out beforehand, by myself, or by talking to sympathetic workmates, or our delegates / health and safety representatives in the workplace, is what the solution to the problem is beforehand. So not just saying “The problem is [that] in my office there's really harsh fluorescent lights. The solution is [if we can] find some way to block the light or turn off the light”. And in my particular office, that's been quite an ordeal that my employer has actually been really fantastic at dealing with. We have these motion sensing lights that cannot be turned off. There's no off switch. If you block them, then the fire alarm goes off and it triggers an alert automatically. So for about three months, I had the poor building services manager at my workplace coming in, trying everything to turn off these lights. And in the meantime, they installed an outdoor umbrella that you would have in a café above my desk, so that I was able to sit and work without getting light migraines.

And it's a very wacky solution, it was a very fun conversational piece to everyone who came through. But that's the slightly out-of-the-box thinking that a good employer will be open to, to find a way that you can work safely and that you can continue to do your work. I mean, other things that I've spoken to clients about [are] even just things like having ergonomic seating, having longer rest breaks, having screen readers or screen magnifiers. Something that I use for everything is a chrome install that has dark mode on. And if you come to an employer with a solution, from an interpersonal perspective, it makes the conversation go that much easier. But also from a legal perspective, it sounds terrible, but it's really useful ammunition if things subsequently go bad. Because it means that you can say “Well, look, I asked for this reasonable adjustment”. In disability and discrimination around disability or workplace safety, asking for reasonable adjustments and setting out the reasonableness of that adjustment is really useful legally.

Steph: Even without structural policy changes, people in positions of power at workplaces can play a huge part on an individual level to better support people. Amity highlights the importance of being the empathetic leader she needed as a junior employee.

Amity: As I kept moving up, and then when I started getting to the director level, and I was really managing the whole team and driving policy and stuff like that, that was really cool. At various points I've managed big teams and I basically told the people I managed “I think limited sick leave is a scam. I think it's one of the most ableist things around”. So what we often do is we just don't log our sick leave. So, people are taking days off, but in theory they haven't taken any.

And it was just our little act of rebellion. And because it was in our team, because we could move stuff around, we could shift deadlines, we were able to do that really well. And oddly enough over a couple of years, this was a team where you were able to get the most amount of diversity, where you were getting people who had chronic illnesses, who were able to stay in these jobs and work. You were able to get the trans people who would come in because they knew if they had days where they had a really bad gender dysphoria flare up, they could disappear and they didn't have to explain anything, they didn't have to go through a whole process. And it was really beautiful and really amazing. But in that situation because you're working outside of the structure to what it's formally allowed, It's very dependent on your individual manager or your individual director. And, when I'm in those director roles, I always think about being the director I would have wanted when I was junior.

Steph: It’s so valuable hearing some of these really positive stories. When I opened this podcast I talked about taking these lessons with me throughout my work life. I think that anyone, whether or not you have a chronic illness or disability, you’re a business owner, manager, even colleagues can hear these stories and the takeaway is to open up the lines of communication, ensuring everyone feels supported in the workplace.

So where to from here? We’ve just heard all of these great experiences, but we know that while there are workplaces doing really great things, the challenges that are placed upon individuals with chronic conditions are still so prevalent. I posed a closing question to each of the interviewees from today. How can we see change? How can we make an impact to better support people in the workplace? Does it need to happen at a federal level or can it start with individuals and organisations? Here are Róisín’s thoughts.

Róisín: The first thing to probably note is that if you're an employer, you have people working for you who have chronic conditions. There may be some very specific fields with fitness tests and stuff, but nearly 50% of Australians have at least one chronic condition. And when you consider a lot of people without chronic conditions are under 18, they may not be working. When it comes to working age people, it's almost a guarantee that you have at least one person in your staff or one of your co-workers, someone in your team, who has a chronic illness. And if you want people to do good work, they need to be given the tools that they need to do good work.

I think there’s two ways to look at it. [First], making sure that you're doing the right things, making sure that people are supported. I think it's just the right thing to do, it's the human thing to do, it's the empathetic thing to do. But secondly, in terms of productivity, return on investment [and] employee retention, if someone is feeling overly stressed in their job because they've got a chronic condition [and] they're trying to hide it in the workplace [or] they’re trying to keep up appearances eventually they're going to burn out and you're going to have turnover in that role. Whereas if someone has the support they need, then they're going to be happier in their personal life, they're going to be happier in their work life, they're going to do better. It's a win-win for everyone, regardless of whether you're looking at wellbeing or your bottom line, it’s a positive for all of them.

A lot of chronic conditions are classed as disabilities. I think we often have a very narrow view of what a disability is. We think about people using mobility aids and people with visible disabilities. But there are so many more disabled people that you see every single day that you have no idea are disabled. Some people might not choose to use that word or identify [as] it, but regardless of whether you identify as being disabled or living with a disability or not, you do have protections against discrimination. You have the right to ask for adjustments in the workplace. You have the right to take your sick leave when you need to take it. So  reading up on your rights and being familiar with those is really important. It can also give you a little bit of comfort as well, that if you do need to have a chat with your manager [to say] “I've got this thing going on, it would be really helpful if I could work from 10 to 6 inside of 9 to 5”. Knowing in the back of your mind that you do have that protection [to prepare] for those conversations is really important.

It's always a little bit unfair that you might have to educate other people. But I think it's getting better, as more people educate, it spreads out. And there's a lot more awareness with employers nowadays of people with chronic conditions, people with disabilities, and how to support them not only to meet your legal obligations, but also just to do the right thing as an employer.

Steph: As for Leon, while he thinks it would be great to see legislation in this space, the greatest impact can actually be seen in workplace culture.

Leon: I think it would be great if we did see federal movement on it but unfortunately, I don't necessarily see right now that there's that much legislative and political will towards it. It seems like the arenas that these kinds of conversations are happening in is more around a right to flexible working arrangements [or] a right to work from home, which is also fantastic. And for some people like myself, for some people with invisible illness and disability, there's a lot of days where in the past I would have taken a sick leave [day] that I actually am genuinely fine to work from home, I just can't get on a train for two hours. But that doesn't help people who are genuinely unable to work for those periods and who might need to just be completely bedridden or might have brain fog that's too bad to open up their emails. I think that it's sort of de facto right now, it's falling to individual organisations to do. And I think that that's really problematic because different organisations will have different capacities, different priorities. Even if I were to assume the best of employers, which in my line of work I don't generally do, but if I were to assume the best, that still places a pretty immense burden on individual employers and on individual employees to negotiate with their employers. The burden that that would place on your outer suburbs cafe or something like that, for the owners to be able to essentially eat paying out a lot more sick leave. Through individual negotiation with staff that could also open you up to accusations of favoritism. It can have a lot of follow on effects. I think it would be fantastic if greater sick leave were legislated because legislation provides clarity. But I don't see there being a strong will towards that yet.

Something that allows for more flexibility around days that can be taken off is certainly a huge part of it. Some sort of legislated system, perhaps in regulations about being able to provide ongoing medical certificates would certainly short term save a lot of angst and difficulty for people with ongoing conditions who might have to otherwise pop back to the GP every week or so. An expansion of and a clarification of protections around disability discrimination, it can be done. There are the federal level and state level laws around discrimination and harassment, and these are often very different state to state. There's not always a lot of clarity around what is considered to be a disability. Having clearer laws and having something like a bench book or a large resource that's available to employers around accessibility and around providing sick leave, I think would be really, really helpful.

But it’s also a cultural change. I think having a strong union presence, and having a strong presence of health and safety representatives who are educated and trained about working with workers with complex chronic illness and invisible illnesses is really important. I was a health and safety rep (HSR) for a few years, and in the training that I did, we covered complex health conditions, helping workers who have invisible illnesses and disabilities. I'm not sure if all the accredited training for being HSR has that, but having that kind of expertise in the workplace and building a culture of respect for diversity because actually having a lived experience of chronic illness can give you so much insight, and make you actually quite good at certain parts of your job. Not to toot my own horn, but I think I have quite good time management and I think that's because I always know I could be two days from a massive flare-up. So having that kind of experience of having to manage your body like that does actually teach you skills that are valuable in the workplace.

I think a really important first step is for employers to be able to educate themselves about conditions that their workers might have. The joy of the Internet is that there's so much material out there. Some of it is crap, but a lot of the time you'll have people talking about their experiences with something like fibromyalgia, their experiences with endometriosis, their experiences with complex PTSD, with all different kinds of invisible illnesses and disabilities. Reading those kinds of people's experiences, [sure] that's just one person's experience [and] it’s not going to be representative, but if you don't understand that at all, it can put you in more of a mindset for empathy and make it easier to then talk to the person. And I think also talking about it in a respectful way, not in an interrogation, is important. Being able to say, “What do you need? What's going to make it easier for you to do the job?”. I think for an employer to be able to look at position descriptions or KPIs and say “What is actually non-negotiable here? and how can we make sure that you are doing that while doing it in a healthy and safe way?”.

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Steph: Kate from HACSU adds that from her experience working with organisations on employee contracts, there are actually a lot of benefits to a business that supports its workers’ needs.

Kate: As far as EBA’s [are] concerned, when we go in to negotiate an employment contract with employers, a lot of employers will say “It's a cost, it’s a cost, we don't like the cost”. There have been a few stand up employers who have incorporated [it] into their agreements. I can name disability providers Yooralla and Possability as two who are doing some fantastic work in seeing that there's a gap in this space, seeing that they've got seasoned female workers that they want to keep, that they want to assist, that they want to help. And they also want to be an employer of choice. And this is a big thing when we look at or speak to people coming into the sector, even though they may not need reproductive health and wellbeing leave, even if they don't have chronic health conditions, [even if] they're not planning on going through the IVF process, [etc.] They see it as an attractive condition, even though they're not going to utilise it. They see that the employer is actually willing to listen to what their employees want and put such progressive clauses into their contracts. I think that's of the utmost importance as well, is that employees feel that they're able to have this space and able to have conversations as well, it changes the whole narrative. When someone comes in and says “Oh, I can't come to work today, I've got a headache”. As an employer, you can sit there and say, “Oh, they're off again, how many headaches do they actually have”. When you've got context around it and you realise “Hey it's not a headache, they actually can't stand up in the morning without vomiting into a bucket because of how much pain they’re in”, it makes sense and you want to help them. We've got it at HACSU. Some of our employees have utilised it. They're more productive. They're also far more open in talking to us as employers to say, “Hey, this is what I need”. We now know why [and] we are understanding of why. So, it's also breaking down those silos.

Steph: And finally in posing this big question of ‘what’s the solution?’ to Amity, she had a lot of thoughts. Not only that people can offer value beyond their productivity statistics, but that the more we talk about what it is that we need from our employers, the more we can start to change these bigger-picture systems.

Amity: I think actually the people who are best able to manage their bodies are people themselves (wild thoughts, truly revolutionary things we’re throwing out). Unlimited sick leave really allows for people to be able to manage their own needs within a system that supports them; without feeling the guilt, without feeling the pressure of knowing you only have X amount of days, use them how you can. Whereas the way our current system of work is set up is you just go, go, go, and you're expected to be at the same level of productivity, at the same level of operation, basically the entire time other than these four weeks of annual leave and two weeks of personal leave every year. And that's just not how the human body actually works.

The way I’ve described it when I'm talking to ‘business-type people’ is [that] it's actually just an investment in your employees. You're actually investing in them. Let's say you're a business owner, let's say you’re a corporation, one of your biggest expenses is recruitment and training. For basically any major corporation, recruitment and training is a huge expense. And when you have high staff turnover because people are burning out, because you don't have adequate support for people with chronic illness because they're leaving their jobs, that expense goes up and up and up. But actually if you’re able to retain your staff, if they are happy, even if they are taking “more sick days”, in all likelihood, your bottom line is doing better because those people are happy at work [and so] they're going to be doing better work. Because they're happy, as [we] said, they're not having to quit their job or they're not having to take huge chunks of time off because they're better supported throughout the journey. Which is also similar [to] all the studies that have gone on about the four day work week have found. That actually, companies [that] have put in a four day work week have more productivity than companies who work five days.

As I said, it's not all about productivity. But, even in that frame of how they think about it, it's not more time equals more productive. At that stage, it’s already a false narrative. But also this idea that your productivity, your output equals value. It's rubbish, both in [the] way that humans are so much more than our jobs (which I do feel really strongly about). But it's also rubbish, [in the way that] when I think about when I was a director at organisations, the value that people bring to teams is so much more than the direct output that goes towards their key performance indicators, right? It's [more] like “What do they contribute to the key culture? What ideas are they bringing to the table? How are they challenging the dynamic and moving us forward and allowing us to grow?”.

So many things that people bring don't necessarily count as an output and don't necessarily fit into being measured how many hours they are working in a day or in a week or in a year.I think my advice would be [to] only have the conversation if you feel safe having the conversation. If you are not in an environment where you feel that level of safety, I don't think it's worth it. [In this case, it might be better to] work out other ways that you can support yourself or if possible, extract yourself from an unsafe environment. If you do feel safe, it’s worth being as honest and upfront as you can be. Particularly in instances and in organisations that may have poorer literacy and understanding of chronic illness or neurodiversity or whatever the case may be.

I think in order for them to trust you [and] that you are going to be able to use the supports well and still deliver, you have to trust them [too] and take the time to really explain it. We talked about employers investing in their employees, [and] I think often to move employers forward towards more progressive policies, employees need to invest in their employers and the journey that employers are on, around educating them and around holding a bunch of that burden. Which does really suck. It sucks to have to hold the burden of educating someone who is paid more than you. And it should actually be their job to make sure that you have adequate support. It really sucks to have to hold that emotional and time burden.
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But I think about it by taking it slightly out of the employment context, and think about [in the frame that] this is actually about relationships. This is about building a relationship with your manager or your boss. Building relationships involves trust, they involve investment and they involve a give and take of burden that at some point is uneven. And so that would be my advice: If you feel safe, do invest that time. Because I think having a manager that understands and is supportive can actually be pretty career changing, in this context. And it's also advice I often give people when they're looking for jobs.

One of the key things to [think about is to] choose your manager, not just your job. And who your manager is going to be has such a huge impact on what you experience in that organisation. Take the time to have a follow up conversation after an interview with the manager, take the time to get to know them and get the vibes. Because particularly when it's stuff like this, particularly when it's stuff that's a little more outside the mainstream conversation and understanding, having a manager that's on-side and supportive, yeah, it's pretty vital.The other thing I would add is to join your workplace union. We've talked a lot about power dynamics, and I think unions are a good way of not fully evening out the power dynamics, but limiting them to an extent. Because when you can negotiate for better policies and entitlements with your colleagues, with your co-workers, [there’s] safety in numbers, right?
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There's a greater ability to negotiate for better stuff when you're in a group. And unions can be really helpful and supportive in that. Talking slightly differently, not about unlimited sick leave, but about gender affirmation leave - we've been able to get gender affirmation policies at two different organisations I worked at through the union. They've been pretty sector-leading policies [that allow] six weeks off for gender affirmation procedures, which is really important, right? Because if you need a gender affirmation procedure and the doctor is saying you need six weeks, what is your two weeks of personal leave going to do for that? And even if you take those two weeks and take your four weeks of annual leave, that’s all your leave for the year. And then you’ve spent [all of your leave] recovering, let’s say it’s a surgery (though it obviously doesn’t have to be a surgery), that even if you get a cold or you have a mental health problem, you’re out of days. Then you’re in the realm of trying to take unpaid leave, and then you have financial issues, then it’s a whole system.

In an ideal world our politicians step up and create systems that serve all of us, and serve all the different needs people have within society and not just white rich political donors want. In the absence of that or in the meantime, while we work to improve our political systems, I think there's some really awesome work that can happen on multiple levels. One is in your individual workspaces where, obviously if you're an employer, you can just change your policies and make them better. If you're an employee and you can unionise and negotiate better policies, either through an EBA or just a policy process, and win better entitlements for yourself, that can be really good. And that's what we did with the gender affirmation leave at some of my workplaces that I was talking about. And that can often have ripple effects, right? [For example], if a lot of workplaces in a given industry or a given sector are negotiating, say, for a four day work week or for unlimited sick leave, in this case. If more and more workplaces are willing, then the union as a whole, that represents all of the workplaces in that sector, [can see] “Okay, this is a key demand that our workers are feeling”. And then they try and negotiate that sector-wide with all [of] the employees, and all [of] the employers. And then you can win really amazing things throughout a whole sector. So for example, this isn't to do with annual leave, but if you work at a university you get paid something like a 17.1% superannuation. Which is incredible. And that went through [the same] process, where individual universities started negotiating that.

Then, I think it's the NTEU that covers uni employees, [could say] “No, this is a sector-wide issue. Let's negotiate with all the unis”. In the sector I work in, which is social services, we now have transferable long service leave that carries from employer to employer. That's a sector-wide win that we've been able to get. And so [you can see] that there’s a real power [when] we build from the ground up, of individual employers then to industries and sectors. And then ideally, at some point, politicians get the idea and they [realise] “Oh, maybe this is important, maybe we should do something”.

Steph: They say communication is key and I think that’s one of the resounding takeaways from each of our speakers today. What I especially loved about Amity finishing up there is how individuals advocating for themselves or advocating for others can have a flow on effect within organisations. But also as new policies become widespread within industries, actually influencing federal movements.

Thank you to our four guest speakers for taking the time to share their own experiences as well as giving us hope for a better, more supportive future in the workplace.

If you connect with any of these experiences, I hope you feel seen and I really do encourage you to share this with others. If this has been a really eye opening conversation for you, much like it was for me, I also really encourage you to share the podcast, because the more we open up these conversations, the more we welcome empathy and change.
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If you want to dive deeper, visit our website at rallymagazine.com.au to see, hear and watch more stories from people with chronic illness and disability in our first edition. You can also follow us on socials, we’re everywhere as @rally.mag. And finally, there are some extra resources linked in our show notes as well as where to find and support our amazing guests today.