YDAS Podcast Season 2 Transcripts

Podcast trailer

Paige: This is the trailer for season 2 of the YDAS podcast, which has 4 episodes.

Kat: Learn how to pace, pace yourself and don't get into a boom or bust cycle. If you feel good, then just do half of what you think you can do.

Laura: It took me a long time to learn that I'm deserving of that rest, and I'm deserving of grace and compassion. And so I guess, I just really want to emphasise to other disabled young people that they, too, are deserving of that rest.

Morn: Chat to your carers, or you chat to your school, your doctor, people who know about your situation and who are able to help you.

Laura: If you are an ally of the disabled community, now is the time to show it.

Darcy: And that doesn't have to be difficult either, it can be as simple as just wearing a mask when you're in public spaces.

Heather: There's still a lot to be learnt about this but we've got these great health experts that really are trying to keep us all safe  and well and bringing to us information that they learn as soon as they learn it.

Darcy: It's a never ending battle, but know that there is so much power and love in community care and looking after each other. 

Paige: You can find us on Spotify, Soundcloud and the YDAS website. Be sure to subscribe, follow us and leave a rating or review.  

Episode 1: COVID vaccinations

Paige: Welcome to season two of the YDAS podcast! My name is Paige and I use she/they pronouns. I'm one of YDAS COVID Vaccination Disability Leaders. We’re a group of disabled young people who are leading a project that supports other disabled young people to be COVID safe, access vaccines and get accessible information about COVID-19 and vaccines. 

Before we start, I'd like to acknowledge the Traditional Custodians of the lands on which we recorded this episode, the Wurundjeri people of the Kulin Nation, and pay my respects to their elders past and present. Sovereignty was never ceded and a treaty has never been signed. This was and always will be Aboriginal land. 

This season of the YDAS podcast has four episodes. Welcome to Episode One, where we're talking about COVID-19 vaccines and boosters. I am fully vaccinated. I got my first two doses in 2021 and my booster in February 2022. 

Let me introduce you to Ciri, my co-host for this episode. 

Ciri is a queer, disabled neurodivergent advocate who lives on Wurundjeri country. They are a Year 11 student who is obsessed with cats, bubble tea and glitter. Ciri is passionate about advocating for social justice. She completed YDAS’ Young Leaders Program in 2021 and has since worked on a variety of projects with YACVic and YDAS. She has recently been working with YDAS to create a series of zines about getting vaccinated and staying safe against COVID-19.

Ciri: Hello, thank you for having me. I'm Ciri and I use she and they pronouns and I'm fully vaccinated too.

Paige: Hi Ciri, why did you decide to get vaccinated?

Ciri: I decided to get vaccinated to keep myself, my family, my friends, my community, and like everyone safe against COVID-19. Because anyone can get it and the vaccine helps to build immunity and also to lessen symptoms if you get COVID.

Paige: And why do you think it's important for disabled young people to get their fourth vaccine dose?

Ciri: Although the first and second doses are great and very important, it's important to also get your boosters because they help keep up that protection and also to build immunity against newer strains.

Paige: And do you think that social media campaigns about the vaccine, COVID-19 and mask wearing are accessible for disabled young people?

Ciri: A lot of social media campaigns don't have captions or image descriptions. The vaccination experience could also be more accessible if campaigns shared information about what supports young disabled people can get such as support workers or sensory friendly clinics.

Paige: What platforms and language could people use to ensure disabled young people feel represented?

Ciri: The government can use all sorts of social media platforms to share information and just avoid jargon. Just put it in everyday English.

Paige: Thank you, Ciri. We're now going to have a chat with Heather McMinn.

Ciri: Heather has been working as a Disability Sector Consultant with National Disability Services Australia since 2020. Heather’s role has been to focus on COVID vaccination, prevention and management, which has included sharing information from health experts with Disability Services and people living with a disability. 

Paige: Welcome to the podcast. Heather,

Heather: I'd like to say I'm very excited to be part of this podcast with each of you today and working with YDAS. My pronouns are she and her.

Paige: Thanks so much for joining us today. Our first question for you is why is it important for disabled young people to get vaccinated?

Heather: I think it's important for young people with disabilities to be vaccinated just like it is for anyone else. And I myself have been vaccinated and had my winter dose. And while some people can't have a vaccination because it might cause problems with their existing conditions, for all those people who can, it does offer protection against COVID. And it reduces the risk of becoming seriously ill and needing to go to hospital. And of course, we know that unfortunately, some people do die from COVID.

Paige: So who can get the fourth dose of the COVID-19 vaccine, also known as the winter dose?

Heather: Eligibility of the fourth dose, also known as the winter dose of COVID vaccine, is available to anyone who is living with immune compromised health conditions, and there's a particular list. But it also includes people who are living with a disability. And it really is focused on those people who will have a likely poor outcome if they become COVID Positive. And that's been expanded very recently, to be available to anyone over the age of 16, who has got those immune compromised conditions that are listed. And it's important to speak with your GP about that, because they will be able to determine with you whether or not it's appropriate for you to have that fourth dose or winter dose.

In some cases, children, or young teenagers aged between 12 to 15, who may have had three primary doses of COVID vaccine will be eligible for a fourth dose as well, if they are in that severely immune compromised group, have a disability and significant complex health needs, or have again, that really serious risk of poor outcomes from severe COVID. So that's 12 to 15 year olds who are in that immune compromised group who've had three primary doses. But otherwise, it's really 16 upwards.

If you're living with a disability, or living with immune compromised conditions, definitely talk to your GP about getting that extra booster shot, to just give you that extra protection, in case your immunity is waning.

Paige: Thank you Heather, We were also wondering if the fourth vaccine dose provides protection against the Omicron variant BA.4 and BA.5?

Heather: The fourth dose vaccination does provide, according to the experts, protection against that Omicron BA.4 and BA.5.  It might not be as strong as it has been for other parts of COVID, other variants, but it still provides a level of protection. 

And what the experts are saying, and this is not from me but this is health experts that I work with and keep up to date with, is that BA.4 and BA.5 is a bit tricky. And it does seem to evade some of the immunity that we've got. But you are still better off if you keep your vaccinations up to date. And for some people, that might mean that your fourth dose is actually a fifth dose.

Because people who have immunocompromised conditions living with particular disabilities, or have you know, those poor outcomes that we were talking about before, they may actually have had three original doses of COVID vaccination. And what's happening is that the experts that we hear on the radio and TV, a term called Australian Technical Advisory Group on Immunisation (ATAGI), it's this group of experts that meet together and they're constantly looking at the disease and how it's impacting the community. And they're looking at how people are going with their vaccinations And  when they're becoming sick, how long it's been since their last vaccination, so they're able to see what immunity that's building up naturally, and what needs to be added with vaccination.

And what they're finding is there is a real need for that added vaccination protection, because the COVID virus is really tricky. And it just continues to change. And unfortunately, it continues to change in a way that wants to make us sick. So it's worth listening to the experts if you're able to have the vaccination. Again, I note that for some people, that's not possible. And so there are other protections they need to take.

Ciri: Can you clarify what the difference is between the third dose and fourth dose booster shot?

Heather: So what's happened is, over time, when we first learned about COVID, and they first developed the vaccines, they were able to say, Okay, we need two doses of what was known as the primary course vaccination. But then the disease continued on to develop in the world. And they were looking again at that immunity and they said, “Okay, you need a third dose, we'll call that a booster.” And then they said, okay, for some people, that's when you need that third dose is actually your primary one.

So what's happening is each time, that COVID changes, and the experts are looking at what's happening overseas, and then looking at what we need here. They're looking at whether vaccination needs to be given again. So that's why sometimes we're being told it's now a fourth dose. And they're calling it a winter dose rather than a booster to try and, you know, reduce some of that confusion. But your GP will know, which is the dose you need and when you can have it, including if you've actually had COVID. You can have it three months after you've had COVID.

Paige: So if people don't have a Medicare card, can they still get vaccinated for free?

Heather: Absolutely. Everyone is entitled to a free COVID vaccination regardless of what dose it is. If you're someone who doesn't have a Medicare card, you may not be able to get your free COVID vaccination at all the pharmacies, doctors or vaccine clinics, but you can get it at lots of places. 

And what we'll do is I can provide you with the links to the Victorian COVID vaccination website and the Australian Government vaccination website, to the pages where it identifies what to do if you don't have a Medicare card. And what it actually does is identify where there are particular clinics, pharmacies or GPS, who are happy to provide that vaccination, I think you'll find that's the majority. And you may find that if you ring your local GP or you ring your pharmacy, they might say, Yes, of course, because they just have to fill out some different paperwork.

But the Australian government has made a decision that it doesn't matter whether you've got a Medicare card or not. You can go and have a free COVID vaccination, whatever dose you need.

Paige: That's really helpful. Is there anything else you want our listeners to know?

Heather: What we know from the experts is that the incidence of vaccine side effects and the impact of them is very low compared to the seriousness of becoming very ill with COVID if you're unvaccinated. That's not to say that those side effects aren't important. But the important part is that if you are talking to your GP, they can actually advise, which is the best vaccination for your particular needs. So they can look at what other conditions that you might be living with, and to match the vaccine. 

The other important thing that I've learned from the experts is, and it's probably no secret to anybody, but COVID is going to be with us for some time. And that means that the experts such as ATAGI, and other health experts around the world are looking at how our immunity changes, and how that protection from vaccination changes. So it's likely we're going to need vaccination for some time. And they might recommend we need another one in six months or 12 months, or they might bring out something new. And it's important to keep listening to those experts and their advice. But again, it's important to remember that not everyone can have a vaccination. 

And so that means we also have to listen to the other advice that they have for us, which is about those other things we can do to protect each other. That might be we need to wear a mask, we might need to social distance, we have to all practice really good hand hygiene and infection control. So it's really about having vaccination as part of that toolkit that helps keep us all safe and as well as we can be with this virus that we're still learning so much about. And that's the thing that I find most important for me as I think about my family, my friends, my colleagues, each of you that I'm working with today.

There's still a lot to be learned about this. But we've got these great health experts that really are trying to keep us all safe and well, and bringing to us information that they learn as soon as they learn it. So thank you very much for being able to be with you today.

Ciri: Brilliant. Thanks so much for your time today, Heather.

Paige: We're almost at the end of this episode. You can be a part of the #helpfulfam by taking one for the team and getting vaxed to the max. As Heather said, while there might be some vaccine side effects, they are milder than COVID symptoms and the long-lasting effects of COVID. 

Ciri: We will talk more about the ongoing symptoms of COVID 19, which are sometimes known as long COVID in an upcoming episode. Getting vaccinated is one of the best things you can do for your community.

Paige: Thank you for listening to this episode of the YDAS podcast. We would also like to thank Laura, Jun and Stacy for helping us with the script and audio editing and SYN Studio for letting us use their recording studio. 

Finally, we want to thank the Victorian Government for funding this vaccination project.

To check out other vaccination content for disabled young people created by YDAS COVID Vaccination Disability Leaders, follow YDAS on social media.

Episode 2: Long COVID

Paige: Welcome to season two of the YDAS podcast, which has four episodes. This episode we will be talking about Long COVID. 

I'm Paige, I use she/ they pronouns and I am one of the YDAS COVID vaccination disability leaders. We’re a group of disabled young people who are leading a project that supports other disabled young people to be COVID safe, access vaccines and get accessible information about COVID-19 and vaccines. 

Before we start, I'd like to acknowledge the traditional custodians of the lands on which we recorded this episode, the Wurundjeri people of the Kulin nation, and pay my respects to their elders past and present. Sovereignty was never ceded and a treaty has never been signed. This always was and always will be Aboriginal land. 

I am excited to introduce this episode's co-host, Alexa, a young person who also has a project for our campaign. 

Alexa is a 3rd year medical student passionate about health literacy and public health. Being born with cerebral palsy, she is particularly interested in accessibility and exploring disability from both the medical and social models. Alexa participated in the YDAS emerging young leaders program in 2020 and is keen to continue learning from other disabled young people and broadening her understanding of the varied experiences of disability.

Alexa: Thanks, Paige. Yeah, I'm very excited to be co-hosting with you. And to kick things off, I'd like to introduce our first guest, Kat.

So Kat is queer, trans, immigrant, chronically ill and disabled. They are a third culture city born country dweller living on the lands of the Yorta Yorta nation. Kat is committed to Disability Justice across all intersections of marginalization and oppression. They seek to continually push the boundaries of non disabled and privileged folks’ understanding of disability and oppression. Kat loves connecting people to networks, individuals and information they need to thrive in a gatekept world.

Kat: Thanks very much for having me.

Alexa: Our second guest for this episode will be Darcy, another one of YDAS’ COVID vaccination disability leaders, Darcy is Blak, trans, mad, neurodivergent crip living on Wurundjeri Woi-wurrung Country. They are passionate about seeking community liberation beyond the confines of the colonial imagination. Darcy works across mob disability, queer and trans spaces. Darcy’s key focus across their roles is empowering community through the defiance and destruction of colonial boundaries.

So thank you both for joining us today. So, if we start off with our questions now, Kat, our first question for you - can you tell us more about Long COVID and what it is?

Kat: Sure thing. So the answer about long COVID is probably quite complex, because it's just something that people don't know about, even though we do actually have a lot of information about it. So Long COVID occurs in around 20% of all COVID cases. And that includes any reinfections afterwards. Some estimate that it's anywhere between like 30 to 40%. But we're just going to stick with 20% because that's what the major, like the CDC and the US and stuff is sticking with at the moment. And that's what the evidence is mostly coming out with.

So yeah, like I said, we don't know exactly what Long COVID is. But we do know a lot about Long COVID. So it's not ill defined or unknown. So if you ever hear anybody saying that, just bust that myth and say, there's so much research being done at the moment. 

It's not psychological, it's not in your head, if anybody experiences any symptoms of Long COVID, it's fully 100%, a complex biomedical condition that affects multiple organ systems. So it's basically it can affect almost all your organs in some way, including your veins, including your nerves, all that kind of stuff. 

Long COVID is actually nearly identical to ME/CFS. So that's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. And it's also very similar to chronic Lyme disease. And to date, virtually all research undertaken on Long COVID aligns with or duplicates findings made on MECFS over the last 30 years. So that is actually a really good, in a way, a really good place to start from because actually we have a lot of knowledge about what Long COVID is doing to the body. We just need to find how to treat it or solve the problems in the first place. 

So I guess a good way to talk about Long COVID is, we don't know what it is, but we know what the symptoms are. So people with Long COVID have reported hundreds of symptoms that like 300 to 400 had symptoms sometimes, but we sort of sticking to around 200, just because that's sort of the most reported - the most commonly reported across all the patients. 

Half of the symptoms are neuro psychiatric. So that's to do with the brain, such as fatigue. So that's not just tiredness, that's really deep fatigue.

Sensory-motor issues, so that's like tremors, tingling, skin burning, that kind of thing; sleep issues, headaches, memory loss; post-exertional malaise (PEM), or post exertional symptom exacerbation, which I'll call PEM just for now, and I'll talk about that a bit later. 

Cognitive dysfunction, which some people were also referring to as brain fog. You might hear a lot of people saying ‘I just got brain fog’, ‘I'm just really just foggy’ that kind of thing. The brain fog, cognitive dysfunction can impair people's capacity to just exist in the world, to work, to engage with their family and that kind of thing. So brain fog can involve poor attention and concentration, difficulty thinking, difficulty with executive functioning. So it's things like planning, organizing, even figuring out the sequence of actions like you know, you can open your phone and just go, what did I come here for? I don't know how to open my password manager. And then what am I supposed to do with the password once I have it? You get really confused about a lot of stuff. You have difficulty with problem solving and decision making and very slow thoughts. So everything comes to you really, really slowly. 

And I mean, some of the theories about Long COVID causes are similar to the ones that researchers found. So you know, viral persistence in the body where it's hiding somewhere, and it just means it's multiplying and causing havoc in the body. And that's what throws your body into that sort of sickness behavior, where it's just like, it can't fight off the virus because the virus is still always there. So, like I said, we don't know what causes it, but there is a lot of information that is still being built at the moment for that.

Alexa: Thanks so much for the incredibly detailed response Kat. Yeah, it's so incredibly fascinating how, despite there being so much available information about Long COVID and the fact that it impacts so many people, yeah, it's really fascinating how there's still so many of us who know so little about it. Darcy, do you have anything that you want to add to this discussion about Long COVID? And yeah, about what it is.

Darcy: I guess just going off what you just said, Alexa, about, there’s so much that is known about long COVID, but we generally, as a broader population know so little. That's part of the reason why this podcast is so important because there really has been a lack of widespread communication and education around Long COVID and a resistance to letting people know even that it exists, telling people to look out for it, letting people know what the symptoms are, so that they can be aware of them, and helping people to minimize the risk and or look after themselves if they do experience Long COVID.

And there are so many shortfalls in so many areas, but that's kind of what we're here for is to circumvent that misinformation, lack of communication, lack of education, particularly for disabled young people who are at higher risk and are also less likely going to be able to engage with, you know, medical information that is very heavy with medical jargon that is very inaccessible. So even if people do know that long COVID exists, they do want to seek out this information, it's very, very impenetrable a lot of the time.

So yeah, it's just important that this podcast exists, and that forums like this exist to demystify these ideas and what they are and what they mean, and make them more widely known and relayed in an accessible format for people.

Paige: Oh, wow, that's a lot that we don't know, even though we've been living in a COVID world since 2020. So how do you get diagnosed with Long COVID?

Kat: So really, it's just like, you've got to go to a GP. There’s supposed to be at least one Long COVID clinic in Victoria, but it has an extremely long waiting list and it's really finding a GP who will diagnose you, that's the difficulty with a lot of chronic illness stuff is that it can be difficult to get doctors to believe you. If you say, “I've got continual headaches or I'm anxious or you know, I'm depressed,” then they'll start treating the symptoms rather than going, “okay, did you get COVID?” And maybe let's look at all of these other situations that you were in where you felt strange, you felt weird, you felt too fatigued, all of that kind of stuff, and put it together to come up with like a diagnosis of Long COVID and then an appropriate care plan. 

If the first doctor that you see isn't helping you then keep looking for doctors, find people on Twitter who have Long COVID in your area, ask them about it, find forums, get onto Facebook groups, that kind of stuff, and just keep looking. It can be really exhausting, but getting somebody who believes you and who will help you is really, really important. The validation of knowing that you are chronically ill counts for so much.

Paige: Darcy, do you have anything you'd like to add? 

Darcy: Yeah, so just with what Kat was talking about treating specific symptoms. That's kind of something that a lot of disabled and chronically ill people can identify with, having experienced either before or in the process of trying to obtain diagnoses for particular illnesses. 

A lot of the time, if we aren't able to identify those individual symptoms as something that is linked, then our doctors won’t either. They will treat them on a case by case basis a lot of the time, unless we kind of give them a laundry list of all of those symptoms together, then, depending on how experienced they are in these sorts of areas, and depending on a lot of factors, they might recognize a pattern in that, but a lot of the time they won’t. And that's something that I experienced in seeking diagnosis for multiple different conditions. I didn't know that I had those conditions until someone else who had those conditions identified it in me. 

And I knew that I had all of these individual symptoms, but I didn't link them together because they all seemed unrelated, they were all happening in different parts of my body, I couldn't, like, even identify them as possibly being related because they didn't seem to have any connection to me. But then, once I was able to identify them through someone else, as all being connected, I was able to take that to my doctor and be like, all of these things are happening together, and I think that that's actually one thing, not all of these individual factors. And through that I was then able to get a referral to a cardiologist to seek a diagnosis or immunologist or whoever else.

And that's something that, again, is an important part about the Long COVID conversation because a lot of there are so many people who are experiencing Long COVID symptoms that aren't recognizing that they might be related to either their COVID infection, or related to each other at all. And so I've seen a lot of people just saying, like,” Oh, God, I'm just so tired”, “I just like, haven't been able to sleep”, “I am just constantly exhausted”, and then there are other things that are happening as well, but they don't recognize them as linked.

And so understanding common Long COVID symptoms and how they can present and what your experience might be, is going to be a really important part of recognizing that you have Long COVID and being able to seek a diagnosis for it.

Kat: I totally agree with you Darcy. And it's also, I think something really key to remember with COVID Is that your symptoms can go away completely. And then you can get other symptoms unrelated to the COVID infection, four to five months or longer down the track. So that's something that people need to keep in mind If they do catch COVID. 

Darcy: And just another thing that I wanted to highlight that I just remembered is when you do get COVID, If you can, notify your GP immediately, get it on record, report your test results. Keep evidence of your RAT results.

Get a PCR test if you can and keep records of those results and put them on file, keep a paper trail of them because it's going to be a really important part of your experience -  whether or not you develop Long COVID or not, but particularly if you do develop long COVID. Having that paper trail of your infection is going to be a really important part of that being recognized and validated and also seeking supports for Long COVID.

Alexa: Those are all really great and really important points. Thank you both for sharing. Yeah, I think, just, as you mentioned, it's a shame how the responsibility kind of falls on us to link together our symptoms, and to actively seek these diagnoses, even though it is so important, that the benefits of having this formal validation that this is very real. 

And, yeah, it's a shame because of the difficulty in formalizing these diagnoses. But yeah, I do understand that it is also quite difficult considering, as you mentioned, Long COVID symptoms do affect virtually all body systems. And so yeah, it's definitely a very tricky situation.

So, Kat, do you have any tips for disabled young people on how they can look after themselves, when they have Long COVID, or any post viral illnesses?

Kat: I do. I have multiple what can be considered post viral illnesses. So Long COVID isn't too far out of my understanding. I experience post exertional malaise, the PEM that I spoke about earlier. So what that is, and that happens, with most Long COVID cases, what PEM is, is it's not just symptom exacerbation, what it is, is it sets you back and then doesn't allow you to do anything until you are back to the original baseline. If you keep pushing, then you will keep getting worse and worse and worse. And you will not recover the same way that you would recover, if you did not have an illness that caused that. 

So for anybody who does have Long COVID, it's really learn how to pace yourself. And don't get into a boom or bust cycle. If you feel good, and just do half of what you think you can do. And take a break for 10 minutes or something, sit down for half an hour, see how you feel and then do it a little bit more.

Because you might get to a point where you've, to sort of use an analogy, is just like you've poured too much out of your bucket and then you can't refill that bucket because literally your body has no energy to refill the bucket like, the mitochondrial cells, which are the energy cells in your body are not functioning properly. 

There's a really great campaign by #MEAction, I can give you the link if you have show notes. It's called Stop Rest Pace. And it is definitely applicable to Long COVID folks. So yeah, have a look at that website, look at those things and find other Long COVID people, long haulers, online, and just talk to them about what they're experiencing. Another really great way that you can pace yourself is if you can afford it, if you have access to it, you might not but if you can access a wearable like a Fitbit or something like that, that records your heart rate, then you can say, you know, I think it's around 80 or 100 or something like that, you just set a heart rate value, and you don't go above that. Some people need to leave it at 70 and not raise themselves above 70 their heart rate at all.

So it's just keeping track of your symptoms, what makes your symptoms worse, what you can avoid. And if you can just rest as much as you can, because it's really, you need to let your body take care of itself. And it's telling you to do something and you have to do that. Don't push through. As my biggest piece of advice is just really take it easy, right. If you can, and not everybody will be able to, but if you can advocate for yourself as well, you have the right to look after yourself. And that is a really important component.

Darcy: What Kat was talking about is incredibly important, but also largely very inaccessible for a lot of people. And also just the impact of like hustle culture or stoicism culture that is so deeply embedded within our society and many other cultures is incredibly dangerous, and it kills people every day. And it makes it impossible for people to take sick leave when they need it. It makes it impossible for people to access the care that they need and makes it really really difficult for people who aren't in positions of great privilege to be able to take that rest and pace themselves and go slow and do the things that we need to take care of our bodies as best we can. 

And that's not something that we can fix or, you know, pose a solution for in this podcast, unfortunately. But I just want to acknowledge the significant injustice of the situation that we're in and the complexity of each person's experiences, depending on different and overlapping experiences of privilege, or marginalization and acknowledge that this is something that disproportionately impacts people who have already been left behind by the same systems and structures that were meant to protect us from COVID and from Long COVID.

Alexa: Those are really important points. Thank you for sharing them. Yes. Rest is clearly very important. But as you mentioned, for us to prioritize rest, and to be able to stress the importance of rest, it does, unfortunately, come from a position of privilege, because that's not something that is a realistic option for everyone.

So with that in mind, could you possibly share any ideas or opinions that you might have about how we can prioritize our daily activities in order to, I guess, conserve energy, and do as well as we can, in recovering from COVID and Long COVID?

Kat: Yeah, it's an incredibly difficult adjustment to make when you have something that is essentially an energy limiting chronic illness. Because that's what this is, and it's dynamic. Some days, you can feel really good, some days, you can feel like a piece of dirt on the bottom of somebody's shoe, like it's just so awful. I think it's really prioritizing yourself, first, making sure that you have some kind of access to food, if you can accept help from friends, or family, you know, do that, don't be too proud to seek help.

Don't feel like you're a burden. Because even though you might be a little sick or really sick, you're still contributing to a really important relationship with the people who are helping you as well. And that's part of community care, you know, like, we have to look after each other. And hopefully, people will appreciate being able to look after you, as well, like, I know, friends have always helped me, when I've really needed it, and it's not been a hassle for them. 

But at the same time, internalized ableism, especially if you're new to disability, it’s just such a massive thing, and it can just overburden everything and overwhelm you. So be really gentle with yourself, I think, as well. Recognize that you're going through something that is actually really traumatic. You're changing your life significantly through no fault of your own necessarily. And I think just try to get the rest that you can, the food that you can, try to schedule your chores and do them little bit by little bit potentially, set them for a time where you know you have the next day to recover, for example, or if you do something for 10 minutes, and you know you have two hours to recover. Just set those limits.

Keep a symptom diary, so you can sort of register what is really bad versus what is a little bad and sort of try to schedule your days throughout in that way as well.

Paige: That's really important to highlight and I guess it really does depend on what you're feeling that day. Because it can, you know, as you've said, it can come back five months out, you think you're fine and then no, you have symptoms. 

So our last question is how can we as disabled young people reduce our chances of getting long COVID?

Kat: That is really difficult as well, because a lot of people won’t necessarily have the option to avoid being exposed to COVID and the best way that you can avoid Long COVID is to not get COVID, because even if you're asymptomatic, you can still get long COVID; even if you're vaccinated, you know, it does reduce your chance of getting COVID. But the breakthrough cases are actually increasing as variants evolve. 

So, the best way to avoid getting long COVID is to wear a mask preferably N95 mask or better. So you can get N95 or N100 or P2 or P3 Mask, and make sure that it is very well fitted, you know, try and do your own fit test and put your hand over your mask and blow, and if there's any air coming out, then you know that it's not going to protect you fully.

And wear that as much as you can, everywhere that you can. If you're having conversations outdoors, you know, BA.5 at the moment, is also contagious outdoors. If you're having just a passing conversation with somebody, just keep a mask on just in case. And avoid repeat infections if you do get COVID because as you develop your symptoms, then you actually develop underlying condition, which then makes you more susceptible to future infections and future damage in your body from COVID infection. 

Rest for at least six weeks after the acute contagious phase of COVID is over, allow your body to recover and heal as much as possible without any additional stresses. Think of how long it takes a broken bone to heal, so that’s six to eight weeks, right? Your body is still going through exactly the same thing, maybe even more than that, recovering from COVID. Because you can't see the damage, you have no idea what it's doing in your body, you can't feel it necessarily.

So the whole you know, “no pain, no gain”, complete myth. Do not believe it.

Don't go to the gym because you think that pushing yourself will make you feel better and heal your body faster, it will very possibly exacerbate it and make Long COVID happen. So yeah.

Alexa: Anything you want to add to that Darcy?

Darcy: I'm not sure I have much to add to that. I did maybe want to open up the conversation very briefly to antivirals. I know that a lot of the research is still fairly new. But antivirals are now becoming more widely available in Australia, and can make a big difference for people who do get infected with COVID. They are accessible for people who are disabled and chronically ill. So a lot of this podcast’s listener base will be able to access antivirals. And it's worth having a conversation with your GP, even before you get COVID, to start to develop a plan for accessing antivirals, if you do. 

Kat, do you have anything to add to that?

Kat: That's a really good point about developing a plan with your GP. If you're already chronically ill or disabled, talk to your GP early and start planning what actually happens because I had friends who were on immunosuppressants, and they couldn't access Paxlovid at the time, but the rules are always changing. So you know, just keep in touch with your GP and just know what your access level is at the time as well.

Paige: Thank you, both of you for your awesome responses and for joining us today. Do either of you have any final words for our audience?

Darcy: Um, something that I just want to quickly say, and this is relevant to what Kat was talking about earlier about internalized ableism. And how that can be a lot to do with especially as a newly disabled, a newly chronically ill person: find community.

Community is such an important part of forming and shaping our understanding and perception of ourselves and our experiences. And the more people you're surrounded with, who are like, “rest is really important, and you know, don't overexert yourself,” and all of these sorts of ideas that we've been talking about throughout this podcast that challenge stoicism culture, that's going to make it easier for you to believe it yourself. It's a never ending battle. But know that there is so much power and love and liberation in community care and looking after each other.

Alexa: Yeah, thank you both, again, for your incredible insights today. And thank you also to our audience for listening to this episode of the YDAS podcast. Remember that rest is best. And yeah, please take the time for yourself to rest when you need and as much as you're able to

Paige: Thank you both of you. 

Kat and Darcy: Thank you!

Paige: Thank you for listening to this episode of the YDAS podcast. We would also like to thank Laura, Jun and Stacy for helping us with the script and audio editing and SYN Studio for letting us use their recording studio.

Finally, we want to thank the Victorian Government for funding this vaccination project. To check out all the vaccination content for disabled young people created by YDAS’ COVID Vaccination Disability Leaders, follow YDAS on social media.

Episode 3: Wellbeing and advocacy during COVID

Paige: Welcome back to Season Two of the YDAS Podcast. I'm Paige. I use she/they pronouns and I am one of the YDAS COVID Vaccination Disability Leaders. We’re a group of disabled young people who are leading a project that supports other disabled young people to be COVID safe, access vaccines and get accessible information about COVID-19 and vaccines. 

Before we start, I'd like to acknowledge the traditional custodians of the land on which we recorded this episode, the Wurundjeri people of the Kulin Nation and pay my respects to their elders past and present. Sovereignty was never ceded and a treaty has never been signed. This always was and always will be Aboriginal land. 

My co-host for this episode is Ciri, who joined us in an earlier episode.

Ciri: In today's episode, we'll be discussing how to stay safe in these COVID times. We'll talk about tips to look after our well being and we'll also discuss how disabled young people can advocate for their needs during the pandemic. We're very lucky to have two guests joining us today. Our first guest is Darcy who joined us in an earlier episode and is another COVID vaccination leader. How are you Darcy? 

Darcy: I am good. Thank you. 

Ciri: Our second guest is Laura. Laura Pettenuzzo is a disabled writer living on Wurundjeri land. She is passionate about mental health and accessibility and was part of Express Media’s 2022 Toolkits program. Her words have appeared in various places including The Age and The Sydney Morning Herald. Thanks for joining us today. Laura.

Laura: Thank you so much for having me. I'm so excited to be here. 

Paige: Hi, Laura. Hi, Darcy. Thanks for joining us, we have a few questions we'd love you to answer. Our first question is how are you staying COVID safe during the pandemic? Laura, we'll start with you.

Laura: Yeah, absolutely. Um, so staying COVID safe and continuing to stay COVID safe, even though we're not under any restrictions anymore is really important to me. So basically, I'm trying to minimize the places that I go. That's to keep myself safe and to keep my family safe. I also wear masks, even if I'm outside, and I don't wear a cloth mask, I make sure to wear N95, which is one of the more recommended ones. So it has a seal across your nose. 

I also make sure, of course, to keep physically distanced, and to also wash my hands and sanitize after touching any surface. Yeah, and just to try to be really aware of, I guess, COVID numbers and taking a RAT or rapid antigen test anytime I notice any possible symptoms and checking in with people around me and anyone that I have had contact with to make sure that they're feeling okay. And if they're not, I'll encourage them to take RATs. And I'll also take RATs.

Paige: Of course, that's super important. And Darcy, how about you?

Darcy: Yeah, my approach has been pretty similar. I have been minimizing contact as much as possible, which is something that I acknowledge, I am in a very privileged position to be able to do.

I am able to work from home full-time, I am able to avoid public transport because I have a license and earn a car. And I am able to access things like grocery delivery and having other necessities delivered to me. So there are a bunch of different ways that I am able to limit how often I am leaving the house. I very rarely leave the house because of my own level of risk and also not wanting to increase the level of risk for other people. 

When I do leave the house, I practice similar things I wear an N95 mask, I often won't leave the house unless it's to do something that is either absolutely necessary in which case I'll be very strategic about things like if I absolutely have to go to a supermarket, I will look up their operating hours and stuff online and look at their peak times - how busy the stores are at any given On time, and when they're the least busy - and I will go during those times, I will avoid any high-density environments. And if I'm going to do something that is social, I'll usually opt to do it outside, or otherwise, I'll just not do it. 

So my kind of approach, it has been a very, a very kind of strict isolating sort of approach. And that's based purely on my own needs and risk assessment and the things that I'm able to do to keep myself and other people safe. So yeah, also just keeping an eye out on changing dynamics and circumstances, emergence of new variants, those sorts of things to be able to make that informed risk assessment.

Ciri: Thank you. Even though restrictions aren’t in place anymore, a lot of people in the disability community are still choosing to stay at home as much as they can to avoid catching COVID. What's been your experience, Laura?

Laura: Thanks for checking in Ciri. Much like Darcy said, how they have been kind of only leaving the house when it's absolutely necessary. I've been doing the same thing. So I have a disability, which means that I fatigue quite easily. And I'm very mindful that given that COVID often comes with quite a lot of fatigue, and I would really rather not have that additional, I guess, drain on my spoons. I have been definitely staying home as much as I can, both to avoid catching COVID. But also to avoid spreading either COVID, or just like any other germs that I might have given that at the moment, you know, we are seeing a bit of a resurgence, not just of COVID cases, but of influenza and other viruses.

So I think, yeah, I'm trying to stay at home as much as possible. If I do socialize, because obviously, socializing is important, and I have loved ones that I do really want to see, I try to make sure that I can do that over Zoom or over Teams or using some other virtual platform. 

Again, I'd like to affirm what Darcy said, and acknowledge that I have an immense amount of privilege in being able to access those online platforms, and in being able to stay home and continue earning an income. But yeah, as a disabled person, for me, it's been really scary to be honest, and frustrating, seeing, I guess, the rest of the world go about their lives as if we're not still living in a pandemic. I guess, seeing people act as though the care, concern and very existence of disabled people is of little consequence to them. When their actions mean that we then have to stay at home, we then have to take these measures to protect ourselves. Yeah, I guess that's my experience. Darcy, what about you?

Darcy: Yeah, I definitely echo that sentiment a lot. My experience has been very isolating, very frustrating, very disheartening. And very lonely. And, yeah, sad. Particularly because for me, there's a very high chance that COVID could be a death sentence for me, I genuinely cannot risk getting COVID. 

And I'm very lucky to be able to do the things that I am able to do to keep myself safe. But I also do that out of sheer necessity. I don't enjoy being cooped up in my house all the time, I miss human interaction. I miss my friends and being isolated all the time makes interacting with other people on the rare occasion that it does happen even harder and scarier and challenging for so many different ways. Kind of just like relearning how to be in social situations paired with constantly having to like make quick risk assessments and think about, you know whether the things that I'm doing are worth putting myself at risk of serious illness or death, all of those sorts of thoughts that are going around your head, in addition to other people's apathy. 

And so it's just very, very multi-layered, and kind of coming at you from all angles. And it's also really hard because I have lost a lot of connections and friends and people throughout the course of the pandemic, whether that's through just losing contact, because of being isolated and not being able to keep up with like maintaining connections with people, or because, you know, the pandemic kind of showed people's true colors and how they truly feel about disabled people and other high risk people, and how willing they are to keep high-risk folks safe. And there were, you know, a number of people that I had to kind of cut ties with, because it just hurt too much to know that they were so willing to put themselves and other people at risk knowing that, you know, people that they cared about and loved could, like, you know, don't really have the option to make that choice. 

So, yeah, I don't know, I kind of want to be able to, like put a nice little positive spin on this question. But I think it's best for me to just be completely honest, even if that reality is kind of quite depressing. But yeah, that has been my experience isolating to keep myself safe throughout COVID.

Paige: That feels real, that sounds really frustrating. So how do you two look after your mental health and well being during the pandemic? We'll start with you, Laura?

Laura: Yeah, absolutely. Um, first of all, I just want to say that Darcy I 100% agree with you, hearing your honest words and the truth of your experience, I think, is really powerful. Because experiences like ours, and you know, people who are choosing to -  not choosing to -  have to, I guess, isolate and keep themselves safe, like our stories and our experiences aren't discussed or covered in the media, or you know, they're essentially erased. And so, by sharing your story in this way, you're refusing to have that experience erased. And I think that's really, really powerful. 

And I guess, touching on something Darcy that you brought up around, having to sever ties with people that reminded me of one of the things that I've been trying to do to look after my mental health and well being during the pandemic, which is to say, there are some people who just don't get it. And unfortunately, sometimes, those are people that you love, and people that you care about and want to have in your life. And so sometimes you might have to, you know, minimize contact with those people, because it is just really hard to have people question your choices and question the choices that you need to make for your own well being. 

So, for me, one of the ways that I've looked after my mental health and well being is, I guess, being really careful with where I spend my spoons, and I mentioned spoons in an earlier answer. For anyone who's not familiar with what that means, that comes from The Spoon Theory, which is an idea that a person with chronic illness used to explain their energy levels. So the idea is that everyone has like a cutlery drawer, or like an amount of energy. And so every person has a different number of spoons or different energy levels. So say an abled-bodied person might have 10 spoons in their drawer. So they could do 10 tasks in a day. But for me, with Cerebral Palsy, I might only have 5 spoons in my drawer. So I wouldn't be able to do like 10 tasks in a day, so I would have to choose which tasks I wanted to do. So when I say spoons, I'm basically saying I have to be careful with how I spend my energy. 

So another way that I look after my mental health and wellbeing is. I'm a big reader and a big writer. So I try to read every day. And I try to write in my journal to just like process how I'm feeling. But I guess, on the flip side of distancing myself from the people who don't get it, it's really finding the people that do, finding that community and those spaces where it's safe. And where you feel as though you're not the only one. And you're not alone. And I know, even just being part of this podcast, and being in this conversation, and hearing you share your experiences, Darcy, it is giving me that sense of, you know, I'm not alone. And there are other people who get it. And so I think finding those people, in whatever ways you can, is invaluable. I would love to hear what Darcy has to say. So I'll hand over to you.

Darcy: Thanks, Laura. And, yeah, I guess I'll start by touching on part of your response that really resonated with me, and that was around, surrounding yourself with the right people and with people who do get it.

For me, my kind of social experience with COVID is kind of multi-layered. Because I, prior to COVID, was already Autistic and already, you know, struggled a lot with a lot of different mental health things, and had a lot of trouble with social interactions and was very much depleted by social interactions and had a hard time maintaining connections with people because of the level of energy required. And that just kind of already as a baseline, being a lot more difficult and energy depleting for me, then with the added isolation of COVID, and all of us being not having a choice in being locked inside our houses for you know, like a year, and then watching people kind of rejoice in being able to go out and do things again, while having to continue to be locked inside my house. 

And watching all of the things that were created or implemented early COVID, to increase accessibility, for people who were in lockdown that inherently made things so much more accessible to so many disabled people now start getting forgotten and phased out and scrapped. Like hybrid meetings, or just online meetings or social things like Zoom, game nights and things like that. They were a big thing, when we were all in lockdown, but now that most people are kind of wrapped up in this illusion of going back to normal or being free that's kind of not really there anymore. Because people don't think that people still need it.

It's kind of made so many layers of challenges for me, to the point where sometimes I just feel like it's easier for me to be completely isolated. Instead of like having to go through the really challenging and exhausting efforts to rebuild connections, or, you know, talk to people or organize things with friends. 

But it's also really, really important. And that's something that I like, I'm constantly having internal fights with myself about just doing what's easy or doing what I know I need to do.

And so yeah, for me a really big part of of looking after my mental health or doing my best to look after my mental health is surrounding myself with people who are in similar circumstances who can relate to me and I can relate to them and you know, you can kind of just exist without feeling like you need to justify everything about your existence. It's just that that understanding is just already there. And yeah, just like continuing to seek out those community spaces online. Because there are so many of us, disabled people holed up inside of our homes all across the world who are being forgotten or that people don't want to think about or remember, exist.

There are so, so many of us, and we can still connect with each other. And we can create spaces for us to be able to share our experiences or even just like, share anything. Spaces don't need to specifically be about, you know, the ways that we're struggling, it can just be an opportunity for a group of people in similar circumstances, to just be in a virtual room together and just talk about things.

Paige: So thank you for your very in-depth answers, it was very important to note that mental health, physical health, social health, all these things are all intertwined. And we really have been feeling like disabled young people have been left behind. So how can we advocate for ourselves? And Laura, you can go first.

Laura: Absolutely, I think advocating for ourselves is one of the most important things that we can do as disabled young people. First of all, I want to acknowledge that it's something that we shouldn't have to do. You know, if the world was accessible and catered to us in the first place, then we shouldn't need to, but unfortunately, we live in an ableist society. 

So I think there are lots of different ways that we can advocate for ourselves. And one of the ways that comes to mind actually links to something that Darcy said in their previous answer around the fact that society has unfortunately gone back to a lot of pre pandemic, I guess, structures or procedures, in the sense that things that became, I guess, accepted and normalized during the pandemic, during lock downs, have kind of reverted to what they were before in the sense of Zoom events. So for me, I have a big book where, like, I am obsessed with books and reading and like all things, literary and writing events. And I am honestly sick and tired of having to check every single event that I want to go to, to look for an online option, seeing nothing, and then have to send an email saying, “Hey, I'm disabled, where's your online option?” And then more often than not, I'm just being told that there is, there just is not going to be an online option. 

So I think one way, one way that we can advocate for ourselves is by like, knowing what our needs are, and speaking up about those needs, I acknowledge that that's a really hard thing to do. For myself, as a disabled person, like I, it took me a long time to even be comfortable with the fact that I am disabled, and that I was allowed to ask for the things that I needed. But I think in a time when, like the world is especially erasing us, and just not considering our needs, at a time when a pandemic is rampant. This is when we have to recognize our own needs and - and believe that we are deserving of them. 

And I guess, advocating for ourselves can be as small as you know, talking to our friends about what we need and making sure that our access needs are met when we're socializing. So, for me, as someone who's staying at home, it might be, hey, instead of like, catching up in person, like friend, can we please do this on Zoom? Or, hey, family, like if I really want to visit you for like this important birthday or whatever? Can we do it outside? Can we all wear masks? Can we all like take RATs?

And I guess also understanding that you can advocate in a variety of different ways that suits your communication style and comfort levels. So for me, if I'm really anxious, sometimes verbalizing what I want, and what I need is really hard. So I might go, I'll send a text message instead. Or if I'm in a Zoom meeting, or something like that, I will use the chat function instead of verbalizing. 

We can also advocate for ourselves on both individual and systemic levels. So individual would be things that I was talking about before, in terms of thinking about what we as people need. So it would be me saying I need a ramp instead of stairs, or I need to meet outside. Or we can advocate in a systemic way, by looking at things in the system or like policies and ideas that need changing. And we can advocate by being on committees or like writing letters to like MPs or decision makers. And I guess bringing it back to COVID-19, It could be educating the other people in our lives about the importance of masks, and about things like long COVID. 

And just thinking about the language that is used by individuals and organizations around COVID. There's so much jargon, so much complex language that's used. And the importance of using plain language, or something that's called Easy English, offers benefits not just for disabled young people and disabled people in general, but also for people who live at the intersection of other identities, such as people who don't have English as their first language. Darcy, what are your thoughts on how we can best advocate for ourselves?

Darcy: Yeah, that was a really awesome answer, Laura. I kind of want to add, like a call for non disabled folks in our lives to advocate as well. Because yeah, everything that Laura said was excellent. But at the end of the day, we shouldn't be having to do those things. 

Yeah, I just want to kind of empower people who aren't disabled, to have their disabled friends and families’ backs, and have disabled community members’ backs. A lot of issues around access that we experienced, are to do with supply and demand. You know, because, as we saw at the start of the pandemic, when everyone needs online options, they're very easily able to be made available. But when it goes back to just being a minority of people who needs those options, suddenly, they don't exist anymore. 

So non-disabled people can really have our backs by speaking up on those things, even if they're not things that they necessarily need to access, they should still help in creating that demand for accessibility for everyone. Because people, sadly, a lot of the time just won't listen or care when it's just a few people who are emailing and saying, “Hey, I need an online option for this.” They just don't think that the additional work justifies the outcome, they don't think it's worth it a lot of the time. But if there are more people that are advocating for, you know, those things to be made accessible on an ongoing basis, there's so much power in those numbers. And we need that support. We can't do these things on our own.

Laura: I just want to say that I absolutely, like times 100 agree with what you just said, Darcy. If you are an ally of the disabled community, now is the time to show it.

Darcy: And that doesn't have to be difficult either. It can be as simple as just wearing a mask when you're in public spaces. It's really not inconveniencing you very much. It's not taking up very much time in your day. It's not a high energy task. But you know, when we see the people who are wearing masks and the people who are not wearing masks, that's a really strong indication of who it's safe for us to be around.

Ciri: Those are really important points to consider. This has been a great conversation, but it's almost time to wrap up. Laura, do you have anything else you would like to say to our audience?

Laura: Thanks Ciri. Yeah, I guess if there was one last thing that I'd really like to emphasize, it's just that we are allowed to rest. And I'm saying this to other disabled people, but I'm also saying it to everyone really.

I guess we live in a society where the idea of being busy is almost glorified. It's almost like there's a reverence, you know, assigned to people when you ask them how they are, and they say, busy. Not only do I not want to be the kind of person who responds in that way, I have a disability that means that I can't be and I have had to spend a lot of time actually teaching myself to respect my own limits and my own needs. And understanding that, yeah, maybe I do want to do X Y Z in a day. But there are like repercussions in terms of my energy in that sense.

And so learning to rest, learning to honor the needs of my body, honor the needs of my mind. And and take that time, whether that rest is just having a nap in the middle of the day. Whether that rest is just like having a snack, or like I'm lying down and just listening to a podcast with my eyes shut so that like, you know, the light isn't overwhelming, like whatever that rest looks like.

It took me a long time to learn that I'm deserving of that rest. And I'm deserving of grace and compassion. And so I guess I just really want to emphasize to other disabled young people that they too are deserving of that rest and deserving of honoring whatever it is that their bodies and their minds might need.

Ciri: Awesome. Thanks, Laura. Darcy, is there anything else you'd like to say to  our audience?

Darcy: Yeah, I guess I'll just take what Laura said a little step further and say that rest is not only something that we are deserving of, but it is something that we need.  It is something that is absolutely essential for us to be able to live. And so if you don't let yourself rest at times, when your body is telling you that you need to, obviously, we can't always rest when we need to. But honoring your body's needs as much as you possibly can. If you don't do that, then your body is going to force you to rest at a time that may be even more inconvenient. It's not something that we kind of see a lot. 

And I think that this has kind of, you know, tied to broader social issues that have been in play a lot around COVID. But people treating rest like self care, and this whole kind of culture around self care people doing like, basic things to look after themselves, like bathing, or having a nap, or reading a book. And that being like this, this big thing, where, you know, it's something that we need to earn or something that like, you know, we can get to after we do X Y Z task. 

I would just encourage people to kind of interrogate that a little bit and rethink their ideas of self care. Because those aren't things that you deserve if you are productive enough to earn them. They're things that you need, and they're things that you shouldn't have to justify, or apologize for, or feel any guilt or shame around. They are just simple, basic human needs that we all need to satisfy. And, and respect and not have to do anything to earn.

Paige: That's so important. We've really stressed that rest is best and that, take time for yourself. Because as disabled people, we do need those online options or we need to, you know, take a rest and we need to preserve our spoons. 

So thank you very much to our guests Darcy and Laura, it's been so much fun chatting with you guys. I've really enjoyed doing all this project stuff with you. Disabled young people are the future and their campaigns and projects can really make a difference.

Ciri: Thank you for listening to this episode. Tune in to the next episode where we speak to a disabled young person about looking after their mental health when they had COVID.

We would like to thank SYN for letting us use the studio and recording equipment. Thanks to Jun for his amazing work with the COVID Vaccination Disability Leaders and for editing our audio files. We would also like to thank Laura and Stacey for supporting us during the creation of the podcast script. Finally, we want to thank the Victorian Government for funding this vaccination project.

Paige: To check out other vaccination content for disabled young people created by YDAS COVID vaccination disability leaders, follow YDAS on social media.

Episode 4: Lived experience of COVID-19

Paige: Welcome back to the second season of the YDAS Podcast. I'm Paige. I use she/they pronouns and I am one of the YDAS COVID vaccination disability leaders. We are a group of disabled young people who are leading a project that supports other disabled young people to be COVID safe, access vaccines and get accessible information about COVID-19 and vaccines. 

Before we start, I'd like to acknowledge the traditional custodians of the lands on which we recorded this episode, the Wurundjeri people of the Kulin nation, and pay my respects to their elders past and present. Sovereignty was never ceded and a treaty has never been signed. This always was and always will be Aboriginal land.

Ciri: In our final episode, we'll be chatting with Morn who is a disabled young person with lived experience of COVID-19.

Paige: Morn uses they them and xie/xiem pronouns, is a high school student as well as an LGBT and disability advocate. Previously, they have done work with Escape Velocity, a youth-led transgender advocacy project. They are doing work with YDAS and Women with Disability Australia (WWDA). They can be seen in some of our TikTok videos. 

Welcome, Morn! It's nice to have you on the podcast today.

Morn: Thanks for having me, guys. 

Paige: So, you've had COVID. Can you tell us more about that? 

Morn: Yes. Well, I was COVID-free for about three years, I'd say. And then I made too many “I'm invincible” jokes’. So God decided to give me COVID. I believe I had COVID for about a month, only testing for it officially at the end of the second week. But yes, it was during exam periods, which was quite interesting as anyone in like Year 11 or Year 12 will know that's a very intense part of the year as it is. But yes, that's kind of why I'm here today.

Ciri: That sounds really difficult. Thanks for sharing your experience with us. What was COVID isolation like for you?

Morn: It was quite boring, honestly. For the first two weeks, I was bedridden. I would only get up to you know, go to the bathroom and pick up my good old UberEATS because I was too sick to cook and things. I'm very lucky that I do school online. Well, unlucky because it's for my disability, but school online, that I was still able to, you know, go to classes and keep up with my schoolwork. But it was also very hard to do while you were in this like constant brain fog. And always having the fun thoughts of like, “do I need to run to the bathroom now?” you know, it was quite well, for lack of a better term, quite isolating, you know. I do dancing four to five times a week. And it is just, I lost all contact with that as we didn't do online classes. That wasn't an option anymore. So it was a lot of just being by myself. Luckily, I was able to chat with friends online and through Discord. But it's really just not the same. You know?

Paige: That sounds really tough as it is, did you have access to things like food and healthcare?

Morn: Not to the extent that I needed. So I don't live in a home, I live in a share house, I was very lucky that I had some savings, well saved up. So I could order food and because I was in no position to cook, clean, you know, all the standard stuff you need to make a meal, it was a lot better once I got into hotel quarantine during that third week where I was officially positive. They deliver food to you every day, which makes it so much easier that I just didn't have to think about food. And it was actually really decent. Like I wasn't expecting the food to be decent at all. 

And they had doctors on call. I was able to get prescriptions filled, because I forgot a few things. Because you know, when you get told “Hey, your ride’s coming in half an hour for your week away trip, get ready”, you don't exactly think about packing everything. You pack what you need. And when you have that brain fog, you're not exactly thinking clearly. So I didn't get everything I needed. But they had, you know, doctors and nurses on call that could help me when I got concerned. You know, one thing I had to do is watch my blood oxygen levels. You know, letting them know when I was a bit low and them being like taking notes and coming to check on me and that sort of thing.

Paige: That's good to know. We know that resting is very important when it comes to COVID recovery and what did you do for self care when you had COVID?

Morn: Lots of sleeping, lots and lots and lots of sleeping. Because that's all I really had energy to do, I could do a bit of schoolwork. And then I would have to sleep for two hours. And I would eat then sleep. Once I got into hotel quarantine, though, I was actually able to like, because I had some more energy. I was like taking baths every night.

And they actually have like programs while you're there. Like on Monday, they have BINGO. And then on Tuesday, they had like yoga and stretching and programs. They actually give you a page was like, here's some things you can do to keep you and keep yourself entertained during COVID lock down. Yeah, sort of a thing. And so that's a lot of what I was doing, just looking after myself, not being too harsh on myself with school and everything. Because, you know, I was very lucky that I was getting towards the end of term. So everything was kind of wrapping up. If this had happened more in the middle of terms, I don’t know what I would have done. But yes, a lot of resting and a lot of baths, like a guilty pleasure of mine. You should not see my credit card history with lush, it's really bad.

Ciri: That's great that you were able to do some things for your self-care. Do you have any tips for other disabled young people who get COVID

Morn: Just be nice to yourself is really the main one. Because a lot of my like disability comes with feeling a bit like a bad term bit “bleugh” all the time. So I'm like, Oh, I'm just having a flare up, you can pushed through it, you're fine.” You know, that kind of negative self talk. And it wasn't till I actually saw their head COVID I'm like, Oh, maybe I should be nice to myself. So even if it's even if you think you have COVID It's not like confirmed like, just be nice to yourself, take it easy, you are going to have less spoons, or spell slots as I use, you're going to have a lot less. Well, depending on how bad you get COVID You know, it's going to be very, very tiring. 

Another major thing is building your support, you know. I know some disabled people are lucky enough to have carers  - reach out to your carers, reach out to your school, your doctor, people who are able to - who know about your situation and are able to help you. Because that's one thing I didn't do. And I strongly do not recommend it, not reaching out. Because once again, I was of that mindset of just a flare up, just push through it, you'll be fine. Not knowing that I was battling something that could have possibly killed me. So yes, the main one being just reach out to people who can help you. It’s going to be making your life like 100 times easier.

Ciri: Thanks so much for sharing those with us. Do you have any tips on balancing COVID recovery with your daily life like schoolwork?

Morn: Don't jump in 100% as soon as you get released from isolation. How do I know this? Well, I jumped in 100% after I escaped isolation. Basically, as soon as I was free of isolation, I went back into my routine immediately. Pretty much exactly how it was before I started to get sick. And I did not cope. I was falling asleep during classes. I was struggling to stay awake at dancing, very fatigued, very tired, not having the spoons. 

As I talked about, I believe, in previous episodes, Long COVID is a thing. So even though you're no longer gonna have COVID per se, you need to still look after yourself as if you do have, as if your body is still fighting something because it is. Unfortunately, COVID is not just you have a week and then you're done. You know, it lasts and it stays around. 

And once again, it comes back to: be nice to yourself, reach out to those who can help you, major point of this episode. Because if I reached out to my doctor, I went, “hey, you know all about my disability. Here's what's happened.” He probably would have been like, okay, so I'd recommend this, this and this, you know, reach out and don't dive in and do everything at once.

Paige: That's a big message. I relate to that as well. How can we support our friends if they do get COVID for example, something that could brighten their day like sending a thoughtful message or getting their favorite bubble tea delivered while they're isolating?

Morn: Well, it depends where they're isolating. If you are in hotel isolation, you actually can't get things delivered to your room. But if they're at home, definitely check with them first. Because, you know, you don't want to send them something and them be like, “Oh, I actually can't eat at the moment.” You know? Yes, sorry, but thank you, you know, letters, thoughtful messages, even as trying to set up, not maybe not daily, but even like a bi daily meeting on Discord, Zoom, whatever. So they don't go insane from the lack of social interaction. 

Because that's one thing I found is being locked in one room for two weeks, with at most five hours of social interaction, awake, through classes, and WebEx meetings and those other things, I felt like I was slowly being driven insane. Because I am a very, very social creature. Or even just having a text over, over the phone just being like, hey, no checking in. 

But also remember that they're quite sick. Even if they have small, cold like symptoms. A lot of the time, people do get that brain fog, and that fatigue and that tiredness. So don't be offended if the person doesn't respond. Because I know half the time I'd watch the group chat, you know, been going I'm like, I'm too tired to deal with that. At all. I don't want to even look at that right now. Because, you know, the first week, I couldn't, I could barely look at a phone level and sunlight. You know, it was just that awful headache, that blinding light. That, you know, I wasn't able to communicate with friends, hence me going insane. So yes, just keeping that social interaction with them. Because in isolation, you do get driven insane.

Ciri: Those are great ideas. Now, we've talked about how vaccinations can reduce your risk of getting very sick with COVID in our earlier podcast episodes. If you are happy to share, were you vaccinated when you got COVID? And if so, do you think that helped reduce your symptoms?

Morn: So I had my two compulsory shots. And at the time, third shots were recommended for my age range. Now, I could have had my third shot for quite a while. But I was always, like, “Yeah, I'll get round to it. I'm not gonna get COVID I'm fine. I’ll get round to it,” you know, and then never got round to it and got COVID which  - moral there, lesson! 

Um, I did go through quite a rough time. But I was very, very, very, very, extremely lucky that I wasn't hospitalized. I was close, but I wasn't. I think if I didn't get those two, those first two shots, I would have actually ended up being hospitalized and having to spend goodness knows how long in hospital, which would have just been even worse, I recommend hotel isolation. So I think the vaccinations just helped bring the level of COVID from hospitalization to oh, we're just gonna watch your symptoms.

Paige: That's really important to note. And thank you for such a great conversation and sharing your experience with us Morn. This episode is the last in our second podcast season about COVID-19 and disabled young people. 

I would like to thank our listeners. Thank you to my co-host, Ciri and guest Morn for joining me for the final episode. We would also like to thank Laura, Jun and Stacy for helping us with the script and audio editing and SYN for letting us use their recording studio. 

Finally, we want to thank the Victorian Government for funding this vaccination project. 

I'm so excited that everything came together. I've really enjoyed preparing and researching these podcast episodes for you all. Stay safe, get vaccinated, including boosters. Check out the other projects in our campaign. Keep boosting your knowledge about this ever changing world we live in!