YDAS Podcast Transcripts

Cindy: Welcome to the YDAS COVID-19 podcast. This episode is all about disability pride. I'm Cindy and I'll be hosting today's episode with Mac and Emma.

Mac: Before we begin, we would like to acknowledge the traditional custodians of all the lands we call home and extend our gratitude to the Elders who have told their stories, sung their songs, and danced their dances here for more than 80,000 years.

It is a privilege to tell our stories on this land. Sovereignty was never ceded and no treaty has ever been signed. This always was and always will be Aboriginal land. 

Emma: Our guest today is Chloe Hayden. Chloe is a 23-year-old YouTuber, horse rider, online influencer, singer, actor, and autism advocate from Outback Australia. Through her YouTube videos, online and live presentations, her strong presence in the autism space, her merchandise, blogs and songwriting, Chloe's message of different not less is reaching a worldwide audience and showing people globally how they too can live their very own fairytale.

Cindy: Welcome, Chloe. It's great to have you here!

Chloe: Awesome. Thanks so much for having me, guys. I'm so excited! 

Cindy: Our first question for you is, what does disability pride mean to you?

Chloe: I think for me, disability pride means having an acceptance and understanding in who you are and what that means. I think for the longest time we've been taught to fear disability and to fear difference.

Society decides on what is aesthetically pleasing and what kind of quirkiness and what differences and things are strange to us or are deemed acceptable and appropriate.  

And I think for me, disability pride is not trying to change myself to fit into societal norms and to tell us what we have to be, but understand that who I am is exactly who I'm supposed to be. And that my differences don't make me less, that if I choose and if I want to focus on what the positive sides of my differences are, they can become my superpower.

With that being said, also not taking away the fact that disability is a thing, and not trying to be someone that you are not. Not trying to say that everything's great and everything's awesome. I think society has this very stereotypical, very odd view on disability. That first of all tells us, if someone says they're disabled, everyone's like, no, no, you're not! Or like, oh, you just need to try harder or you just need to do this, that, or the other.

Or if I say I'm disabled, because my disability isn't physically - you can't see it, it's an invisible disability - people will be like, oh, you just need to do better, it's not really that bad. I think people have this really odd idea of disability and think that it's automatically a bad thing. And that just because we're disabled, that it means that we're less or that we feel less, but that's not what it is.

We can be disabled and absolutely thrive and absolutely love who we are at the same time.

And I think the biggest thing about disability pride is understanding that who you are as exactly supposed to be, regardless of anyone else or anything else.

Emma: That's an amazing response Chloe, and that really resonates with me. I think trying to have disability pride and that journey to it is very complicated. And there are so many setbacks. And sometimes you might take like one step forward, two steps back.

But I really resonate with you saying how people constantly told you weren't disabled when you were. That has been something that I've been experiencing the past few years. And I was very adamant for quite a while that I wasn't, that I just had a chronic illness and it wasn't a disability.

And it has been the past two years, that I have realised that and really embraced it. And having that questioning from people really doesn't help. And it really invalidates your experiences and the struggles that you have. Thank you so much for that response.  

Chloe: No worries!

Cindy: Yeah, I resonate with that so much, like, kind of a little bit opposite to you. I have a very visible physical disability, ever since I was born. And even in that context, it is really hard to find acceptance, especially when you're so young.

And you kind of go through this kind of weird, delusional phase where you're like, oh I'm not disabled, or like, oh yeah I'm disabled, but it's like a small part of me and I'm not too disabled. And that kind of offsetting that is such a weird part of the journey, but I think it's a really important part. 

Mac: Yeah, I'm kind of the combination of the two. So I have a physical disability. I'm a wheelchair user so it's pretty obvious, but mine was very sudden and out of the blue. I practically woke up one day and needed to use a chair. And so for me, disability was a word that was kind of thrusted upon me in such a negative association.

And it wasn't a word that I could self-identify or choose compared to my other identities. So, it's this really bizarre experience of like, I don't like agreeing with what other people tell me I am, I am very stubborn. But then realising that just because they're using it in a bad way doesn't mean that really is what it's about. And really, they don't have the right or they shouldn't have the ability to choose how we should define the word. It's actually the disabled community and us who ultimately should have the final word. 

Emma: Yeah, and I think we talk a lot about pride in different aspects of our lives. I think it's a really powerful thing to be able to embrace that, which actually leads me on to my next question that I have for you, Chloe. It's about what your journey was like to developing disability pride, because we know, it's a very hard thing. And it's an ongoing process. So I would love to hear about it!

Chloe: Yeah, 100%. I think I was lucky in the fact that I had very, very supportive parents, who even before I was diagnosed as autistic and ADHD, always really, really encouraged me to be who I was, regardless of what society told me.

So as a kid, there would be things that I loved that was maybe a bit odd for my age, or things that I really, really struggled with, which was odd for my age, and that people my age and much younger than me were able to thrive with doing.

And my parents never tried to force me into something I couldn't do or things that I couldn't handle. They pushed me, but they would never force me into doing things which they knew wasn't something that was going to bring me happiness or get me any further in life. They have always encouraged what I could do and were always very, very positive with me being autistic even before they knew that autism was a thing.  

So that was definitely a privilege, that I was able to have parents that were so supportive of me, right from the get-go. Even before we even knew that there was a get-go in the first place. But with that being said, when I first got diagnosed as autistic, I was 13-years-old and in typical Gen Z fashion, went to the internet.

And I Googled a lot of these articles, and the only things I would read were these clinical scaremongering articles designed by psychologists or by parents of autistic kids. They were making out my mind to be a really dark, scary, clinical place that wasn't a safe place. It wasn't a kind place. And it was terrifying.

And the only time you'd ever hear of autism was in a really negative contexts. In media, it was always some old cisgender white man who was a complete stereotype of autism. In the news, it was always these like fearful articles about autism. In the playground at school, it was always people using the word autism as an insult.

So it's hard to be prideful in your disability when the only context you have on your disability is these awful, horrible, scary things. For a really long time, I was like, I don't want to tell anyone I'm autistic. I don't want to tell anyone I'm disabled, this is weird. I don't want to be associated with this.

And I had that really deeply internalised ableism that so many disabled people have because society tells us one thing that isn't actually true or correct whatsoever. But as humans, we take things at face value. We take things as this is what we say, so this is what it must mean.  

It took a really long time. Learning to find that safeness and sanctity within my disability came after a lot of time. First of all, making a blog post. That's how I started everything I'm doing now. I wrote in this blog post, because I was terrified and didn't know anyone else that was disabled.

And I, you know, put out a call out on the internet and saying I'm terrified and I have no idea who I am and what I am. And if there's anyone else that's like me. And it wasn't until I started seeing all of these people coming back going like, yeah I'm autistic too and it's hard, but things are going to be okay.

And then also seeing like my idols that happen to be autistic. You know, you look at anyone that's in the top of any sector, whether it's you know, music or art or science or math or writing or whatever it is, I can guarantee you they are neurodivergent.

And after I was able to go, okay well, the things that society is telling me that autism is - that it's scary, and it's clinical, and I'm not going to amount to anything - that's not true. This is what real autism is! 

And it was me getting out into the world and me realising who I was was okay because of seeing all these other people and because of you know, starting to do all the work I'm doing now, that I was able to become prideful in who I am.

Now I have parents ask me all the time, if you could, you know, take a tablet if there was a tablet or a vaccine that was created to make you not autistic anymore, would you take it? Absolutely not!

I love who I am and I am who I am because I'm autistic. Being autistic isn't a hindrance to me. Yes, it's a hindrance because of what society tells me it is. But it doesn't hinder me as a person. It doesn't hinder what my abilities are.

Because of being autistic, I'm able to do all these wicked things that I have achieved, which I can guarantee a lot of people twice or three times my age wouldn't be able to achieve. And I'm able to do that because I'm autistic and because I found pride in my disability.

Cindy: Yeah, I resonate with that so much, like having kind of going through life having cis white men tell you, this is what you should experience and this is what's going to happen as a step-by-step guide of like, you should experience this and then you'll do this. And that's just so demeaning. It's like, am I not allowed to experience what I am experiencing? This is wrong.

I'm so glad and happy that you had supportive parents. It's just a wild thing to me, because I look, I didn't exactly have not supportive parents coming from a culturally and linguistically diverse background. It is not the most common thing to kind of experience quite supportive parents, especially in the world of disability. Because disability is just viewed differently.

And for me it took quite a while to kind of accept that. But their view of me is still of love. But it wasn't what I needed. And I think you touched on this, I think we, in the disability community, find such support and love from kind of found family.

And people we like to surround ourselves with, people who understand us, is such a heart-warming thing on the journey towards kind of disability pride and the ongoing process of disability pride. 

Emma: Yeah, I think whenever we have an idea of what disability looks like, I think it has always been centred around cis het white men. And I think then if you are the slightest bit out of that, there's so much disbelief from people that you could be experiencing these things.

And I know, there's so many stories of people, you know, talking about their experience with their disability. And it's just being dictated by cis white men, telling them they're not doing it right.

And there is no right way to be disabled. There's so many different ways and even within, you know, the same disability. You might have the same disability as someone else, but it presents so differently. And I think you really touched on that well about how amazing support from family is, and how having a supportive community really does wonders in helping us with disability pride.

And I think that's something I found this year and has done absolute wonders for my life. I'm such a better person in the past six months just from finding that community. 

Mac: Yeah, I was much like you the second I got my diagnosis. I was off to the internet to get some advice. And it was completely horrendous. It was all about how your child is not going to be able to be independent, they're going to be living with you for the rest of your life. And they're going to be a burden. It's going to be horrible, and they're not going to have a quality of life.

And so it was this big shock of, oh my gosh this is going to suck, because I had no other knowledge. I was like, this is going to suck so much - how am I supposed to be prideful within myself? And it was same for you.

The second I kind of connected with community and got to meet some other disabled people, I realised, actually the stuff I learned on the internet is completely different to the reality, which is often because those people who write it don't represent how others live and the way they experience the world.

Yet their perspective is often the overall representation for the community. And it is a journey, and it has lots of ups and downs. And I think that's important to acknowledge that it's not linear. And every day you take it day-by-day, and eventually get to a point where it's kind of a neutral perspective.  

Which leads us to our final question for today's podcast, which is, how can we support others in their disability pride journey?

Chloe: I think the most important thing is to understand that different doesn't mean less. And like I said before, who you are is exactly who you're supposed to be. You were put in this world for a reason. All of you inclusive - not in spite or because of a disability. It's all you and always will be you and who you are is amazing!

And I think the more that we have, first of all that representation, the more that we have positive, accurate, media portrayals of us. The more that we have positive, accurate community groups representing us. The more that we have people in our lives, that support us and love us and accept us. And people that we know and that we're friends with, that we connect with that also have disabilities. The more it becomes mainstream.

I think the biggest thing with our society is we see mainstream as the norm, that we see mainstream as how it's supposed to be. And if we create disability to be in the mainstream as well, which it already is - if we create it to be the mainstream and make it more normal than society is currently telling us it is - it's so much less terrifying.

It's much less scary, and so much less of a big deal to be able to find that acceptance and find that self-worth and that self-love. And it's a difficult thing. Like, it's a really hard journey to find positivity and acceptance for yourself when you don't fit in those normal realities, regardless of what minority group you fit into.

But find your community groups, find people in your life that love you and care for you and support you, because of who you are, not in spite of who you are. When you're on Instagram and TikTok and Facebook, get rid of the people on your feed that are unkind and uncomfortable and promote this able-bodied mentality that everyone feels like we should have.

Follow disabled creators, follow bipoc [Black, Indigenous, People of Colour] creators, follow people on your page that are representing your diversity. And I think the more that we create diversity within ourselves and within our own lives and our own fairy tales, the more that we can start to see it as a society as well. 

Emma: That's an amazing response! And I know I'm going to be taking on some of the feedback that you've just said - sorry, the advice you just said.

I know I have had such a big shift in my life when I started filtering through my Instagram and who I follow. It's so much more of a positive experience now, because I'm seeing myself reflected, but I'm also seeing other communities reflected a lot more. And it's really great to hear other people's stories and, you know, trying to figure out how I can be a better ally to them as well.  

So, thank you so much for your time today! It was absolutely incredible to have a chat with you. You're making waves in this disability space, and we really are honoured to have you here today. So, thank you! 

Cindy: Thank you! Just for all the listeners out there, this podcast was an amazing experience for all of us. We've been head nodding the whole time! We hope you enjoyed this episode of the YDAS COVID-19 podcast. Check out our other episodes while you're here. They are on our website.

Mac: We'd like to thank Anhar and SYN for their help with editing and the recording of this podcast series. We would also like to thank Is and Laura for their excellent facilitation of the COVID-19 Working Group. 

Mia: Welcome to the YDAS COVID-19 podcast titled Reasonable, Necessary and Essential. This episode is all about education. I'm Mia and I'll be hosting today's episode with Emma and Lee. 

Emma: Before we begin, we'd like to acknowledge the traditional custodians of all the lands we call home and extend our gratitude to the Elders who have told their stories, sung their songs, and danced their dances here for more than 80,000 years. It is a privilege to tell our stories on this land. Sovereignty was never ceded and no treaty has ever been signed. This always was and always will be Aboriginal land.  

Lee: Our guest today is Is Hay! Is Hay, pronouns they/them, is a disabled, queer, mad and trans young person living on stolen Wurundjeri Woi Wurrung country. They work in the youth and disability spaces advocating for the mass policy change their communities need.

They're also a writer using prose or nonfiction to explore topics around disability, awareness, education, and pride. They are passionate about making education and employment systems not only accessible, but affirming and welcoming for marginalised people. 

Mia: Welcome, Is. Our first question for you is, how did you self-advocate and get the adjustments you need at school and university?

Is: Well, firstly, I often didn't because it was not accessible. So, I started a TAFE course at the beginning of 2021 and had to drop out of said TAFE course because it was not accessible. And the adjustments I needed, either weren't available or it was not easy for me to even know that I could get those adjustments.

Definitely did all the self-advocacy I could and asked people for things and requested them, and yet still was not given that. So I think my self-advocacy, I believe was strong, but it's not just about me getting the adjustments I need. It's about systems and educators being able to provide that to me or not provide that to me.

So I do my best to use my voice and like speak up. But often that's not enough to break down the education system.

Emma: Yeah, I absolutely couldn't agree more. I know that when I was looking for my education accommodations, I only knew about them because of like the medical system and my family looking into it for me. So thank you so much for answering that.

With COVID-19, what are your thoughts about the accommodations that were made available during the pandemic that were refused when disabled people asked for the same  adjustments in the past?

Is: Yeah, I have so many thoughts about this. I was lucky enough to write an article with The Age about this at the beginning of this year, talking about how COVID-19 was terrible for disabled people, but also gave us things we've been asking for for decades. And that we don't want to go back to the inaccessible world just because abled people want to and like COVID is scary, we don't want to think about it.

So I think a really big one is things like working from home, like being educated from home - all those different things that we've been told, that's ridiculous, how dare you? That's not getting the same education! And then overnight, it was like, this is a priority, we need this, we have to do it.

So that was like incredibly, kind of frustrating to hear that when they view something is a priority, things can happen overnight. So, we're like actively not a priority.

And so while it's like a terrible situation, hopefully being able to like utilise, hey, look what we can do if we put energy into it and move forward from that to be able to continue doing that in the future, is what I'm hoping for. But it can't just be disabled people asking for these things, because we're not enough of a stakeholder for people to want to change.

So, making sure that we get our abled allies to say, hey you should do this, as well, because they're more likely to be listened to.

Lee: Yeah, I think going off on that, like, how it really made us realise how accessibility is so easy. It's just not a priority for a lot of people, unfortunately. And now we have a different kind of question for you.  

What should education around disability look like? Another way to think of it might be what should others be taught about disability and creating accessible environments?

Is: Very convenient question for me, because my ultimate plan for my life is to like write all of the curriculum and reform it after a revolution, you know. So I think what it would first look like is it's written and delivered entirely by disabled people. So not some random like able bodied, old white man being like, this is the definition of disability.

Like, we can't have that, that's not what disability education is. And I think it's also gonna take a lot of work about acknowledging what disability is, so it's not just like, here's how you be accessible to a wheelchair user. It's like a really like comprehensive understanding of this is who disables you - it is society, it is not your body, it is not like buildings. It is society for not doing those different things.

And so, having that be like the framework and from like the social model and the human rights model of understanding of disability. And it will be entirely led by getting cool disabled young people to go into schools and be like, here's how you do better - that's the bare minimum - do it!

And those kinds of things, and hopefully helping a lot of young people actually realise they're disabled as well. And they're entitled to accessing our community, accessing supports, like engaging in these spaces and challenging the systems. So like, I hopefully have a lot more years of like coming up with what it actually looks like, but I hope it'll be big and scary for abled people.

Mia: I'd like to right now volunteer to be your note taker. For that entire process, please, also for the revolution. That sounds like a hell of a lot of fun.

You and I are both people who graduated high school in recent years. And it can be quite alarming for anyone, but I definitely found it to be quite challenging navigating being a disabled young person, having to enter a completely new environment and re-advocate for a bunch of my needs all over again.

What's your advice for disabled students going from school to university or TAFE? And how can they get the support and adjustments they need?

Is: Yeah, definitely lots of thoughts as someone who attempted to make that switch and then wasn't able to. I felt lucky in that I was privileged enough to even graduate high school.

So, I got the things I needed to like, get my certificate, though it was like very inaccessible and hard. So, thinking about entering another education system, another education setting, all of that was terrifying. And then I was proven right, by the fact that it was not accessible for me.

So, I think like, the first thing is knowing that you don't have to settle for anything less than, like accessible, inclusive, affirming environments. Well, that might mean that like, yeah, you don't get to engage in an education system or a particular like institution.

I think that that can actually be really helpful knowing that you don't have to exist in this like terrible, inaccessible space where you have to compromise your identity and your needs.

So, knowing you don't have to enter tertiary education or a specific institution, just because it has prestige. And then also, like doing your best to get other people on board to help you. So, it's not just you like yelling at a brick wall to get better things.

It's like eight people yelling at a brick wall, trying to get better things and utilising as much people power, and as much abled people power as you can, to get the things that you need. And, knowing that you don't have to settle for things that are unacceptable. You don't have to accept them saying no. You're allowed to keep fighting. 

Emma: I think that's such a good point to say that we should, you know, think about what our needs are. And our needs aren't this extreme thing and they should be catered to. Because, I mean, without them, we can't do things, as you've said.

I know I had a recent experience where I actually couldn't go to university this year, and I was wanting to go to university to continue my education. But they were being very horribly ableist to put it very short. And I couldn't go because I had to draw the line in sort of what I needed and what was a safe and inclusive and accessible environment for me, which is a very hard thing to do, especially when you're young.

So yeah, and talking about accessibility outside of the academic space. So, how can accessibility go beyond academic needs to pastoral care and extracurricular activities for those in high school and or university?

Is: Yeah, incredibly big question. Because I think, like accessibility is viewed as a tick box. It's like, cool, do we have an elevator - sick, we're accessible. And that like doesn't even discuss like how academia is inherently inaccessible.

Like, just because you can sit that exam does not mean that the institution of being in academia and studying and existing in that space is, like, safe for you. Because I think that's what the key thing is, accessibility isn't like acceptable, its safety.

So, viewing it that way, I think is really important. But even like, beyond like academia, having it be like community, and like engagement in spaces that are optional, and that are on your interest, not because you have to do this as a part of your course or because you feel obliged to because society thinks you need to study.

So, I think a lot of it needs to be reframing as like, cool like we want disabled people in our extracurricular activities, but also like, here's how we can make extracurriculars specifically for this community.

Also, here are the assets that disabled people provide. So, I was a better debater, because I had had to advocate for myself my entire life, which meant that I like was a really effective public speaker. So then, like my high school team benefited from me, being on the team.

So, having all of those different, like institutions and like extracurriculars recognised. Like, hey not only do you want these people, they actually like bring out lot for us.

Not that we should need to be like exceptional to get invited, but having that be the framing so that they don't even just like tick the box of like accessibility, but they're like, here's how we can make it affirming for you.

So having that, like mindset be at the back burner, though, that is much easier said than done.

Lee: Yeah, I do agree with you that unfortunately, it is a lot easier said than done. However, I think what everyone here has highlighted is the benefit that disability brings to education of just the entire community.

And I think what we've also highlighted is that in terms of education, in terms of academics, accessibility not only needs to be at the core, but the peripheral. So what I mean by peripheral is all those extracurricular activities, sort of like debating, as Is said, and how that actually benefited Is’ team that Is actually had to advocate for their needs all the time.  

So, I don't know how to say that, but I think you'll get what I'm saying. And I think what I mean by the core is kind of your classic kind of academics, which is often inaccessible. And I think we all have our stories, and the majority of people listening probably will too.  

But thanks for joining us today Is. This brings us to the end of the episode, unfortunately. 

Emma: And thank you so much everyone for listening in. Check out our other episodes for more great interviews with members of the disability community. We have some great episodes. They're very exciting, so please go listen. 

Mia: We would like to thank Anhar and SYN for their help with recording and editing this podcast and Is for the excellent work facilitating the COVID-19 working group, as well as Laura for coordinating this project.

Mia: Hello and welcome to Reasonable, Necessary and Essential, the YDAS COVID-19 podcast. I'm Mia and I'll be hosting this episode with Emma.

Emma: Thanks Mia. Before we begin, we'd like to acknowledge the traditional custodians of all the lands we call home and extend our gratitude to the Elders who have told their stories, sung their songs, and danced their dances here for more than 80,000 years.

It is a privilege to tell our stories on this land. Sovereignty was never ceded, and no treaty has ever been signed. This always was and always will be Aboriginal land.

Today, we have with us Chloe Sargeant. Chloe Sargeant is a Sydney-based writer, reporter, illustrator, radiantly queer scallywag, noodle enthusiast, and one half of the Chronically Fully Sick podcast!

She is currently writing a book about living with fibromyalgia, and you can find her at @ChloeSarge, that is @CHLOESARGE on Twitter and Instagram.

Mia: Thank you so much for joining us, Chloe!

Chloe: Hi, thank you so much for having me. It's so wonderful to speak to so many other radiant scallywags that are wonderfully disabled and chronically ill!

Emma: Amazing! So to start off, I would love to ask, how can disabled young people self-advocate and more easily navigate the healthcare system?

Chloe: Well, I think one of the things that really sort of changed my way of thinking and sort of helped me out when I was struggling to navigate the healthcare system with trying to find diagnoses, and all of that kind of thing was kind of changing my way of thinking about, you know, I'm a very sort of justice driven, left wing kind of person. And I'm like, no they shouldn't be treating us like this!

And while that is 100% true, we do have to kind of think about a day-to-day situation where we do have a healthcare system that is unfortunately quite stacked against us a lot of the time, which is an  unfortunate truth.

So, I guess the way that I started navigating the healthcare system was by kind of going on the offensive as opposed to the defensive.

So, my advice for disabled young people is to be armed with as much knowledge as you absolutely can. Do enormous amounts of research and homework on your symptoms and what you think your diagnosis may be, and all of that sort of stuff. Just arm yourself with as much knowledge as possible.  

So if a doctor does turn around to you and go, oh well, I'm not sure about that, then you can go, oh well, it could be X, Y, Z. 

And I think the top tip that I was ever given as someone with chronic illness is that so many doctors will quite often refuse to test you for certain things just out of pure laziness. And that's, you know, we're all nodding our heads. Like we know, we know that that's the story time and time again.

And a lot of chronically ill people especially, we will be able to relate to that story. But the top tip that I was given was that if a doctor ever turns around to you and says, oh no, well, I'm not going to test you for that. Turn back around to them and say, oh great, well, if you could note down that you refuse to test me for that, that would be great. And if you just say it very firmly and very forthright, it will shock them and they'll go, oh okay, maybe I could, like 99% of the time.

So, it's unfortunately about navigating a healthcare system that is, you know, quite against us a lot of the time. So, arm yourself with knowledge and just try to go on the offensive as much as possible.

Mia: You're so right! I honestly think that there's a note on my files at my GP's office that says something along the lines of don't mess with her.

Chloe: Love that!

Mia: After a rather assertively written letter to their manager.

Chloe: Absolutely! And assertiveness is something that like particularly women, assigned female at birth people, like trans and gender diverse people, tackle - they have to face a lot of the time. When we're being assertive, we - they - get told that we're being rude or hysterical or all that sort of thing.

But just remember that you are well within your rights to be assertive. Be forthright and be firm. If you come off being a total bitch then so be it, you know.

Mia: I totally agree. On that note, but on the flip side, how do you think that medical professionals could improve the way that they communicate with disabled young people?

Chloe: Well, I think the only piece of advice that I could sort of, like feasibly give, is just listen to us.

You know, we see so many medical professionals that when we try to speak about our experiences and our symptoms, and you know, what we go through on a day-to-day basis, - we just get cut off. We don't even get the opportunity to speak about this.

They're not getting the whole story if they do that. And so they may be diagnosing or treating us incorrectly because they're not listening to what we're going through.

So yeah, I think, realistically, the only thing I can really- I'm not a doctor, I'm not a medical professional - so staying within my lane, that is, that's really the only piece of advice I could give. Because, you know, if you're not listening to your patients, then why are you even a medical professional to begin with?

Emma: Yeah, I know, the furthest I've gone and like the best outcome I've had with my diagnosis, figuring out what's, you know, what my health is like, is when doctors have listened to me. But I still think I've never had that full listen to because I know, there's plenty of things still, that I'm undiagnosed with, that they just don't take seriously from me.

And it's, it's really hard when you are trying to have that conversation with your doctor, and they aren't listening to you when you're paying a lot of money a lot of the time, because these are specialists that, you know, charge exorbitant amounts.

Chloe: Yeah, I just paid my week's worth of rent to be able to go see you, and you didn't listen to a word I was saying...

Emma: A lot of it isn't covered by you know, government rebates or any of those things, and they've been cutting a lot of Medicare as we all know. So, on to the next question. I know you have spoken about this before, but I would really love to learn a little bit more about how you do it.

So, as a chronically ill person, how do you navigate things like unsolicited advice and other things? Other people's opinions on your health management. Because I know we all get comments telling us to do things. I would love to learn about how you've gone through it.

Chloe: And here's a big question. How much time do you have?

Yes, oh, when you are chronically ill, you do you do tend to get quite a few -  and right now I'm even understating -  you get constant bombardment of people's opinions on your health and how you should be treating it and unsolicited advice. And the 'have you tried yoga?' and all of that sort of thing.

And yes, I have tried yoga. Yoga is great, but it does not cure my nervous system malfunctioning and sending incorrect pain messages to my brain.

So look, it depends on the situation for me now. If it's a complete stranger, I tell them in the rudest terms possible to rack off because my body is absolutely not the place for their opinions. And they need to go sit back down at the pub and stop giving me opinions. Because, you know, it's just not their place.

But if it's someone, most of the time, it's someone that you love - your family or friends or that kind of thing. And because they've got really lovely intentions when they're saying it, it's so hard to turn around and be like, bugger off, you know what I mean?

I think the thing that I started doing was kind of creating a little bit of a short spiel about what my illness is, and how I'm treating it. And basically, like, memorising that spiel, like I'm an actor, that's like auditioning for a role.

Yeah, like it is just as soon as you sort of firmly and forthright go, well actually I've got blah, blah, blah, and I'm doing this, this and this to treat it. People just kind of know what they're doing. I think the thing that I've learned is that able bodied people always tend to think that we're not doing enough to treat our chronic illness and that's because able bodied people have this lovely view of health in the world. They think that if they do everything right then they will never get sick.

And that, we know full well, that that is not the case. You know, you can do everything right and still get sick. You can do everything right and, you know, your illness still flares up. We know that's not reality, but for them they think that I must not be doing enough to treat my illness because I'm still sick.

But trying to explain that to them is, I will say, damn near impossible. So I wouldn't go down that route, but just sort of having a little spiel that you can really firmly and forthright go, nope, this is what I have, this is what I'm doing.

And usually, they kind of go, oh alright, well you know, she knows what she's doing and blah, blah, blah, I'm sorry, I'll shut up. Most of the time. There's some real determined people out there to tell you everything about your body. But that's my tip.

Emma: There's definitely so many people giving comments all the time. I think I've tried every single diet possible and every single type of supplement possible. The amount of money I've spent and now I'm at a point where I'm like, I'm not doing it anymore.

Chloe: Totally! And it is so expensive to go through all of that. If you tried everything that every single person suggests to you like 'only a drink celery juice' or whatever the latest thing that Gwyneth Paltrow says will cure everything. If you tried all of those things that people suggest, then you would be just as sick as what you are now, because the vast majority of these things do not work and are wellness woowoo ridiculous things.

But it's also super expensive to go through and trial all of this stuff and all of these fads and it's impossible to try them all. It's impossible to feasibly believe that some wellness woowoo thing is going to cure my nervous system malfunctioning. It's bizarre, but good intentions, I suppose. But god, it’s frustrating!

Mia: I will never stop laughing at the person who suggested I take up running as a hobby when I use a cane to walk, as if running is going to do anything except make me fall over.

Chloe: Yeah, running will fully send me to the hospital. Like, if I tried running or like cardio exercise - like all pain specialists that I've ever seen in my life have been like, don't do that. That's a bad idea for you. But god, people love to suggest it, don't they?

Yeah, the worst one I've been suggested was a man came up to me in the pub and asked me if I'd ever tried urine therapy. So, drinking my own urine! That was the worst one I've ever been given. So, take that as you will. People love to suggest some crazy shit!

Emma: I think we need to now go, wait, have you tried that, though, has it improved your health? We just need to push it back on them. And get their insight into it.

Chloe: He reckons that he had one mate with fibromyalgia and it had cured them of it. So you know, it's always that one friend of a friend with fibro, that it's worked for them. But you know, anyway, I decided not to drink my own pee, just so everyone is across this.

Mia: That goes quite well into our next question!

Chloe: Oh, good.

Mia: With people like that existing and with a healthcare system that is quite brutal and quite difficult to navigate and overwhelming. How do you manage to maintain perspective and like stay connected to community and find some joy and lightness amongst it all?

Chloe: Look, I struggled with this for a really, long time because, god, like it's one of those things that like when you're chronically ill, it's not just one little thing that gets you down. Because we deal with so many constant things and constant bombardment of opinions and health things and all that kind of stuff.

Eventually it drags us down a bit and look, joining a lot of online groups was one of the things that really helped me. I admin a group called Chronically Fully Sick the same as my podcast. And that that group has absolutely been a lifesaver for me.

So yeah, finding community is the number one tip that I would give and I did that via the internet, which is the easiest way to do it in this day and age. But yeah, I think number one - finding the community in the first place. Internet is the number one go to! 

Having perspective is like, finding some joy and staying light. That is a really, tough thing to do. And that's why I and my friend Jo decided to start our podcast. So many of the podcasts that are about disability and chronic illness and that sort of stuff are either a bit sort of doom and gloom-ish.

Or they're just like about facts and news and that kind of stuff, which are all incredibly, super important. But we just wanted something that was a bit silly and a bit light and just finding the laughter that is, you know, all of the ridiculous things that we have to deal with, with chronic illness.

A lot of them are really, really funny, but they're hard to laugh at when it's just you by yourself. So, we wanted to create something that was just the two of us having a bit of a vent and a bit of a bit of a laughing sesh about a lot of these situations.

So yeah, we have that podcast out, which is just us like having a laugh about all of these things. Because I think if you don't have a laugh, you do end up getting a bit dragged down by a lot of these types of things. So yeah, that's what I did. But you know, I'm sure there's a lot of different ways.

Mia: Well, thank you so much for joining us for this chat today, Chloe! It's been absolutely lovely to talk with you about all of these things.

Chloe: Thank you so much for having me!

Mia: And I look forward to going and continuing to binge your podcast.

Chloe: It's very silly. We have a segment called quack watch, where we just highlight someone that is peddling some woowoo nonsense that they are selling to chronically ill people like ourselves and we've found some pretty interesting stuff. So far, there's been a celery juice, the urine therapy people like I was telling you about. There's some interesting people in the world, that's for sure!

Mia: Sure, so well, we hope everyone enjoyed this episode of our podcast. You can check out the other episodes while you're here.

Emma: And a big thank you to Anhar for her help with editing and recording this podcast. Thanks also to Is for their excellent facilitation of the COVID-19 working group and to Laura for putting this all together. So, thank you so much!

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