A Wheelie Good Chat
Welcome to A Wheelie Good Chat, hosted by me, Sam Cole—where real stories meet real conversations about life with a physical disability, and everything in between.
No topic is off-limits. Through candid reflections and honest discussions, I aim to break barriers, challenge assumptions, and inspire a more inclusive world—one conversation at a time.
Whether you’re here to learn, reflect, or simply hear a fresh perspective, you’re in the right place.
Follow the journey on Instagram: @awheeliegoodchat | @sam.bamalama
A Wheelie Good Chat
26. Redefining Respect in Medical Spaces
Through personal stories and reflections, Sam and Joel aim to shatter the stigma surrounding disabilities while highlighting the significance of inclusive healthcare communication. In this candid conversation, Sam and Joel shed light on how Sam's health needs differ from those of able-bodied individuals, confronting assumptions about her physical condition and celebrating the strength she found in maintaining a generally healthy life despite mobility challenges.
Discover the powerful role of respectful and direct communication in healthcare settings, particularly for individuals with disabilities. Sam and Joel delve into how a supportive healthcare environment can enhance their effectiveness. The episode also reveals Sam's frustrations with being overlooked during medical consultations, urging for more autonomy and respect. By sharing these personal insights, Sam and Joel hope to inspire change and foster a sense of belonging for people with disabilities. Let's challenge societal perceptions and advocate for a world where dignity and understanding are at the forefront of healthcare interactions.
Thanks for listening, we really appreciate the ongoing support! Follow the podcast on Instagram @awheeliegoodchat and Sam @sam.bamalama
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https://podcasts.apple.com/au/podcast/a-wheelie-good-chat/id1654431839
Before we begin, we would like to acknowledge the traditional customs of country throughout Australia and the connection to land, sea and community.
Speaker 2:We pay our respect to their elders, past and present, and extend that respect to all First Nations peoples today and in the future.
Speaker 1:I'm your host, sam Cole, and this is a really good chat where we divulge areas of my life yes, even not so PG ones, if you're a first-time listener. Thank you so much for joining a bit of a backstory on myself. I have a neuromuscular condition called dystonia and I started this podcast with my friend Joel to break stigma and normalise conversations around disability within society, so we really hope that you stick around for future episodes. Hello and welcome to my co-host, joel.
Speaker 2:G'day Sam. Pleasure to be back. Took another break, didn't we actually? But back back at it.
Speaker 1:Yeah, and you know I feel like what do they say? Distance makes the heart grow fonder, so hopefully you guys are just fonder for us now.
Speaker 2:Yeah, that was the plan. Just make them miss us more. It was good. How have you been, Sam?
Speaker 1:Yeah, I've been keeping. Well, you know, busy, busy, that's a lot.
Speaker 2:Bus, busy, busy time. Obviously that's a lie.
Speaker 1:You've just been hanging out, you've just been chilling, yeah, chilling like a villain, yeah, just trying like I'll just be, like laying in the sun, trying to get some color on me. Um, because, if you know me, I'm very white. If you would be so kind to call me white, yes, um, you've got some reflective vibes, yeah yeah, yeah, to say the least, but yeah, how have you been keeping joel?
Speaker 2:well, I've been busy, and over here in queensland it's been raining, raining, raining, so no sunshine for us. Over here we're swamp people living in the swamp.
Speaker 1:AKA shrink On today's episode. We thought we would talk about my experience with health professionals and just how they treat me, and just maybe some stories and just comparing to an able-bodied person, like just the different experiences.
Speaker 2:That's it, health. We've all got it, and I think today we're going to dive into what your health feels like for you, how it's different to us or maybe not so different and what kind of experiences you have, because I hate going to the doctor and I can only imagine that anything that would make that experience worse would really deter me, so I don't really want to go at all. So let's dive in. Sam, how would you sort of say generally, your health is at the moment?
Speaker 1:I think I'm a very healthy person. It's just physically that I'm, you know, not, I guess, where I would ideally like to be. It's just the physical side that is more my. You know my qualm. Is that the right word? Qualm we, my qualm? Is that the right?
Speaker 2:word Qualm, we can say qualm, yep.
Speaker 1:Your issue. Yeah, I'm very healthy in my internally.
Speaker 2:I guess we could say that Right. So you're saying, yeah, use a wheelchair to get around. Yeah, you've got some mobility issues and stuff like that, but you don't get sick.
Speaker 1:I'm very grateful that I don't get sick Like I'm not immune, compromised as I know some people experience that and that can really jeopardise their I guess their life, which must become like really scary for them. That's something that I've never had to worry about, which I'm very, very grateful for not having to have that impact my life.
Speaker 2:Is that a common thing with dystonia? Is that a normal thing that in dystonia there wouldn't be any compromised immune systems?
Speaker 1:Well, I guess so, because it's like it's a neuro thing, it's not like a.
Speaker 2:Neurological.
Speaker 1:Yeah, yeah. Well, that's what I've always thought it would be for everyone. I mentioned previously that it's that I don't know too many people with this, or no? Well, I don't know anyone in my life do you get cold every year?
Speaker 2:I get a cold every year, sam. Every year I get sick. I take time off work.
Speaker 1:Not really, and if I do get like the sniffles I'm like I just got a hay fever guys. You know I'm all good.
Speaker 2:That's really the extent of it, just like a bit of hay fever is all you get.
Speaker 1:Yeah, well, that's what I tell myself. Okay, and you know, it's like I'm not bedridden, I'm not like locked away, that kind of thing. It's ridden, I'm not like locked away, um, that kind of thing. It's more just how, like if I'll get anyone else sick, but um, but yeah, I just tell myself I've got hay fever and then she's good to go that's it all right, so generally pretty healthy.
Speaker 2:Doesn't sound like you're in and out of hospital all the time. Yeah, no, right, so pretty sounds like you're healthier than I am. To be honest, I don't know what your secret is. I should know what it is right. Do you find that, like in wintertime, do people sort of get around you a bit more and kind of are worried? Do they assume that maybe you're a little bit more fragile than you are?
Speaker 1:I would definitely have said yes back when I was, you know, a lot younger, like you know teenage years and younger as a kid, but as an adult I wouldn't say so much, which is a good thing. No one likes to be modicodled.
Speaker 2:That's it. That's good, that's good. So what are some of your biggest health needs then? You don't get sick, you don't get the cold. You don't get the flu. You don't get the cold, you don't get the flu. Did you get COVID?
Speaker 1:Only once.
Speaker 2:I got it like three times. Was it bad?
Speaker 1:No.
Speaker 2:No, you were right. All right, really healthy then actually, yeah, fantastic, barely got COVID. What are your biggest health needs then?
Speaker 1:I've got a dodgy knee and it's genetic. Thanks mum for that. When I say a dodgy knee, it dislocates. Yeah, it dislocates pretty easily.
Speaker 2:You're very casual about that.
Speaker 1:Well, I remember the first time I did it I was. I think I was 12 years old, or maybe 13. My brother has done his knee several times.
Speaker 2:It's all the left knee as well, which is quite funny same knee right, okay, yeah, horrible family heirloom that you all get to have these bad dodgy knee. It's not supposed to do that.
Speaker 1:Supposed to stay connected yeah, who would have thought if I was a netballer or whatever, I would definitely have to have some sort of surgery. So all we can say is that my family isn't very sports orientated because we have genetic.
Speaker 2:Yeah it's destiny. Destiny says no, okay, so bad knee. That has nothing to do with dystonia, though that has nothing to do with your diagnosis, anything like that. That's just something that you were just, that's just something that you inherited. Okay, fantastic, so your worst thing is a bad knee, anything else any sort of ongoing health needs well, every three months I see.
Speaker 1:Well, I call him my botox guy. He's actually my neurologist. What?
Speaker 2:okay, he's a botox guy, but he's also a neurologist yeah, I mean is this in a real healthcare facility? Is this some guy like in this backyard hanging out?
Speaker 1:I could do both. No, so I get botox in my body right, you that's you're so right now.
Speaker 2:What do you mean? What do you mean? You get Botox in your body. Where In your face?
Speaker 1:No, I get it in my arm and then in my calf and then recently I've had it in my bottom of my foot, which hurts like a bitch, it just depends. I go in there and he's like, oh, how's your body kind of been going? I'm like, oh, I'm struggling, know, straighten out my arm, for example. And he's like, okay, like let's jump in this area or whatever it may be so it's functional, not cosmetic yeah, yeah you just want sexy calves.
Speaker 2:I'll be like this forearm is wilting a little bit. Can we puff this up? How does the botox help it? Just it. You straighten things out. It helps you mobility.
Speaker 1:Yeah, yeah yeah, exactly. No, no, definitely not pain. Yeah, I've been having Botox every three months since I think I was 19, 20, I want to say and I've been seeing the same neurologist since then and I'm very grateful to have him. He has personality.
Speaker 2:Yeah, and see, he obviously knows your needs well. He knows your condition well. Does that make a difference?
Speaker 1:Oh, definitely, and when I go in there it's very, I want to say, friendly. Yeah, nice way, I'm not having to call him by, like Dr.
Speaker 2:Oi, botox guy. Yeah, yeah, yeah, fill me up, buddy.
Speaker 1:Yeah absolutely.
Speaker 2:How do you feel afterwards? Are you a bit groggy afterwards or is it like an immediate fix? What does Botox feel like?
Speaker 1:Oh no, definitely not groggy after, unless I've had the green whistle. So sometimes I get the green whistle in parts of my body that's going to be painful to inject. So my thumb that can be quite painful apparently. But yeah, most of the time I just go raw dog and I just inject me away.
Speaker 2:So for those of you who don't know, uh, green whistle is a, is a pain relief that you you suck on, and it's green, so it's called the green whistle it probably takes, like, I think, a week to 10 days to kind of kick in, and yeah, so every three months okay, yeah, so every three months you get this. Takes about a week to kick in. This is crazy to me. Does it wear off? Is that we have to keep getting it re-injected?
Speaker 1:yeah, it wears off. So before I had I was going to the gym on a regular basis. I would really notice it wearing off like a lot sooner.
Speaker 2:Right.
Speaker 1:Yeah, but now like it really lasts, I guess before I could like kind of tell when I was G, like probably two to three weeks out, but now I think with my constant gym it's not as like, oh, I need it now, kind of thing.
Speaker 2:Fitness helps. Yeah, great, yeah, it's like a combination of everything. Yeah, that's the same for all of us. Sam, I haven't had any fitness in a while, I've not been in the gym. I'm feeling it crazy. So I mean, you're so casual about this, but I don't know anyone that gets botox every three months. Is that a pain in the ass? Is that like annoying and frustrating?
Speaker 1:you have to go do that no, I think it helps going to see the neurologist because it's not like it's a bit of I don't want to say it's fun. It's a fun environment. Sorry, not a fun environment, it's a relaxed environment. Like I said before, he's not a typical neurologist. When you think of a neurologist, he's not the one that everyone would think of. Sure, definitely not a pain and it's not a nuisance to go, and also it's not a painful as well. But, yeah, it 100% helps. So for that it's really worth it.
Speaker 2:Yeah, I guess what you're saying is if it's a good welcoming environment, it's an inclusive environment, it makes a big difference. I guess I don't really have any health needs that requires me to see a specialist every three months. So I guess I don't really have any health needs that requires me to see a specialist every three months. So I guess that's sort of one area where your life is a little bit different, where you have this requirement, but that doesn't necessarily mean that it's a negative thing, it is what it is.
Speaker 2:It sounds like you're really used to it and it's working for you Great.
Speaker 1:Yeah, and also I feel people who do get cosmetic Botox would go every three months.
Speaker 2:It's not a permanent thing. Do you have to get it reapplied right?
Speaker 1:yeah. So like say, if you get it in your face, like botox in your face, yeah it like would run out after like 12 weeks or three months well, you said your face was very.
Speaker 2:What are you trying to tell me? It's almost like you said, when you get it in your face it's a hint, take it we're gonna pick anybody's heart didn't need to pick a body part, could have just said in your body, you know in your face specifically joel, you will need to get it every three months yeah, thanks, sam.
Speaker 2:Thank you, and that's right well, you know a good neurologist, they can do it for me. So great, hook me up, okay. So really positive experience with with botox guy, which is arguably a better name for him what about other? Health care. Oh sorry oh sorry.
Speaker 1:I just want to say he actually listens to my podcast, which is, you know, incredibly very fortunate. So Shout out to Botox Guy.
Speaker 2:So it sounds like you've had super positive experience with Botox Guy. Well done, botox Guy, for being a legend. What have your experiences been like in other healthcare services?
Speaker 1:Yeah. So thinking about all my previous health professional experience, I guess one that does come to mind is when I've had some treatment. Instead of telling me what's going on or what concerns may be happening to me, they go and get my mum and tell her instead of telling me, because I am the one who's experienced it. Does that make sense?
Speaker 2:Yeah, it's like treating you like a child.
Speaker 1:Exactly.
Speaker 2:Right.
Speaker 1:And I'm very conscious of going. Oh so do you mind telling me what's going on?
Speaker 2:Yeah, normal thing. You'd say yeah. So what do you reckon?
Speaker 1:Before my mum comes and helps me off the bed or whatever it is.
Speaker 2:What would they say? Would they just say nothing? Would they walk away?
Speaker 1:They would respond to me, which is great. If I hadn't asked, they would have gone and got mum and, as they're walking to the room, they would have told her about what's happening. And I'm like I'm 32 years old, 32 years old like, sure my mom is with me, sure she helps me out of the bed or whatever it may be, but it's my health. Maybe I don't want her to know about what's happening in that aspect of me it sucks that you you have to trigger that.
Speaker 2:You're just not. You're not seen as a fully functioning adult straight away. Why a healthcare professional? No less. That's where it's really disappointing. The other thing that I'm hearing there is that even if they tell you, they're probably still going to tell your mum on the walk back. So you're right If you don't want your mum to know about what's going on in your health, for whatever reason. That doesn't need to be a selfish reason. Maybe sometimes your mum has just got a lot on her plate and you don't want to overload her.
Speaker 2:Or maybe there are things that you just want to handle by yourself, but that choice is kind of stripped from you I don't know how I'd feel if my mum, if my doctor called, the equivalent would be my doctor calling my mum after every appointment and giving her an update. I think that feels weird. I wouldn't like that at all.
Speaker 1:Hats off to mum. As soon as she's walking back with the health professional, she comes into the room and she makes eye contact with me, like doesn't make eye contact with them. So then it's kind of like directed towards me and it's like oh, did you, did you know that? Or something like that. So it's not like mum's not hiding it or not getting me involved, if that makes sense.
Speaker 2:Trying to role model and say tell her she's an adult.
Speaker 1:Yeah, go mum. Exactly, yeah, absolutely, mum was a legend oh god, honestly.
Speaker 2:Real shame is that. Is that something that happens in many health care services?
Speaker 1:I would say, more often than I would like to admit yeah but I feel that as I'm you know, as I'm a fully-fledged adult, I can kind of either kind of read it, as they're not educated, or they're awkward, or they're like overcompensating, or whatever it may be as a kid, I would just kind of get angry at them or at mum, yeah, instead of just articulating oh, oh, can you please tell me it's for me, kind of thing yeah, so you've gotten better at uh advocating for yourself over the years definitely, and I guess I've kind of had to yeah, but that's that's almost a little bit sad in and of itself.
Speaker 2:You know, I think if, as an adult, if I went to hospital, I would expect even if my mom was there visiting I would expect them to tell me, and not my mother, I would expect them to ask me if I wanted my mother to be in the space when they gave me that information. I think they would too. I think confidential, confidentiality and privacy and things like that and it just sucks that there's some health care services that they think that you don't get that like those rules don't apply to you because of something you have no control over, and that just sucks. That just sucks. Have you noticed that? Like, do you think times are getting better in that space, or is it a bit hard to tell because you've gotten so much better?
Speaker 1:Yeah, I think I have definitely gotten better at voicing what I want or what I'm not comfortable with, or you know, like I said before, please speak to me. This is about me. I would really, really hope I think I've mentioned this in previous episodes I would really hope that you know society has gotten better in regards to communicating with a person with a disability. Heaven forbid, you know. I think it also depends on their experience with someone with a disability, as well as what area they're in, if that makes sense. So the health professional that I was talking about, with that experience, I'm sure, for what it is, they might not get many people with a disability coming into seeing them as regularly as I would so I guess the takeaway there would be you always treat the person that you're treating yeah, definitely right.
Speaker 2:What would you say? The takeaway, what would be the lesson that you would like to send to healthcare services that are maybe not including you or empowering you in that space?
Speaker 1:It's about something really intimate or private or whatever it may be. It doesn't matter if it's private or not. It should be the person who's receiving the support or the treatment or whatever it may be. You should be talking directly to them because it's about them, and you should be checking if they want their parent or their carer, or whoever it is, to be informed of what's going on. Yes, and I think it's just treating the person with a disability as a person. There may be extra support required, but that doesn't mean they're any less of a person. That's right.
Speaker 2:We've all got needs, haven't we, mm-hmm? When a healthcare service gets this stuff right, what message does that send you as a consumer or as a person?
Speaker 1:Yeah, it makes me feel I'm actually valued. Yeah, and as simple as that. And I think it's really really sad that when I leave a, say, a cafe or a I don't know even a shop that I'm always like, oh, they were so lovely. Why are we speaking so highly of just general communication style?
Speaker 2:Okay, so we're saying that, yeah, it's wrong that it's the exception, it should just be standard, yeah absolutely and I guess we've talked about this in the podcast before but a sense of belonging is important and it's difficult to wake up in a city that tells you all the time that you don't belong, through the way that people treat you or the way the buildings are built, and I think healthcare is just one of those really important spaces where everyone should feel included and should feel empowered. In those spaces and you're very intelligent, you're very capable, just the the way that you look basically is is is what is achieving or what is causing these things to occur?
Speaker 1:hopefully, things are getting better, you know.
Speaker 2:Hopefully people are picking up on these is what is achieving or what is causing these things to occur.
Speaker 1:Hopefully, things are getting better.
Speaker 2:Hopefully people are picking up on these communication needs and that these things do really matter. Having a sense of value and belonging is really powerful.
Speaker 1:Oh, definitely, and I know we've like, as a society, we've got a long way to go. I know we've like, as a society, we've got a long way to go. But these small steps to being more inclusive are so critical to, I guess, normalising interacting with people with a disability in all walks of life. There shouldn't be a wall, jump backwards when someone in a wheelchair comes to the store, or let me open the other side of the door for you when it's I can clearly fit in.
Speaker 2:Just, I don't know, that's probably not really relevant, but you know what I mean oh, but I guess it's like that's almost signaling a little bit it is it's othering yeah, like condescending, like that is very condescending, but yeah yeah, it spotlights your difference in a way that's unnecessary it's unnecessary.
Speaker 1:Yeah, you're like. I'm already aware of my differences.
Speaker 2:Yeah, um, I don't need to be any more highlighted yeah, wouldn't that be funny, though, if you could sort of pretend like you were shocked what, when did this happen?
Speaker 1:I always think like saying something like that, but I'm never quick enough. I'm like oh, hindsight's a wonderful thing.
Speaker 2:Yeah, yeah, that's a writer and put them in like a notepad, have them ready. That's the worst, isn't it? Wait once again. Not that one, not that one. Oh, this one will get for this.
Speaker 1:this is the one that's gonna make you think twice mate, I could see you doing that actually.
Speaker 2:Yeah, honestly nerd, yeah, yep, my little notes app the person who wrote pre-wrote answers to our icebreaker questions. Yeah, I could see you doing this yep guilty. I had to get it right.
Speaker 1:God forbid I get it wrong well, that's all for this episode, guys, I really hope you learned something and, you know, took some point from it. If you have a store or if you are a healthcare professional. Yeah, I hope there was, you know, some form of insightfulness. As a way of thanking you to my co-host, joel, aka the Question, Guy the Question Guy.
Speaker 2:I'm competing with Botox Guy, I feel a little bit. Always a pleasure, sam. Thanks for having me on again.
Speaker 1:Thanks for listening to this episode. We really hope you enjoyed it. If you want to stay up to date, please follow a really good chat on Instagram, where I post the latest, and make sure you're following the podcast on your streaming platform. That's all for this episode. Stay safe, everyone.
