Welcome And Why Hidden Disabilities Matter

James Dunn 0:08

We acknowledge and pay our respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability. Welcome to another episode where we will explore a variety of non-visible disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements that benefit everyone. Hi everyone, my name is James Dunn and I'm your host. And like many of the guests on the Sunfire Conversations, I also live with disability, including myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome. On today's show, I'm joined by Yvette O'Dow. Yvette lives in Melbourne on the lands of the Kulin Nation. Yvette was 32 years old when she first showed signs of multiple sclerosis in 1995. She has now lived with MS for over 30 years and has experienced many challenges on her disability journey. Yvette has provided peer volunteer support to other people with MS and has also written a book about her experiences living with MS. Yvette is a passionate advocate for the Sunflower Initiative and for making positive change for anyone living with a disability. Yvette O'Doubt, welcome to the show.

Yvette O'Dowd 1:38

Thank you for having me.

James Dunn 1:40

So take us back to 1995. What did your life look like just before you started experiencing symptoms? And what do you remember about the journey from first symptoms to finally getting that MS diagnosis?

Yvette O'Dowd 1:53

It was actually a really significant turning point for my life before the MS. I had just qualified as a breastfeeding counselor, I was working as a volunteer. My youngest child was about to head off to school. My oldest child was about to head off to high school. I was planning on going back to work and I was busy. I had lots of stuff happening. And um then one day I woke up and I had a pain in my eye, and then my vision started to fade. And I went and saw the doctor who sent me to a specialist and they said I had optic neuritis, which is an inflammation of the optic nerve. And although they didn't say I had MS at that stage, the most common cause of optic neuritis is multiple sclerosis. Um so they sent me away and said, you know, get on with your life. And then I had two more episodes of that. And then five years after the first episode, um I was diagnosed with MS because I had um lost feeling in my foot and that classified as multiple sclerosis. And life changed.

James Dunn 3:15

Wow, so that's a really long time between first symptoms and diagnosis. Is that the same these days or was there something different then?

Yvette O'Dowd 3:25

No. So um I had to meet the criteria of two episodes and two parts of the body, which was then able to be diagnosed. These days they'd give you an MRI at the first sign of anything. A generation before, they used to put you in a hot bath and if you couldn't get out, um, they diagnosed you with multiple sclerosis because that heat fatigue was the diagnostic tool. So we've come a long way.

James Dunn 3:55

Yeah, absolutely. That does sound a little bit archaic. But you were sort of in the middle, so it still took a little longer.

Yvette O'Dowd 4:02

Um, you know, going back to that time, uh, they used to not always tell the patient. So a man might be told that his wife had MS, but we didn't need to bother her with that. Wow. Yeah. So progress is is it's ongoing.

James Dunn 4:19

Yeah, absolutely. So can you remember how you felt when you first heard the words you have MS from your specialist?

Yvette O'Dowd 4:26

Well, I was devastated because um everything I knew about MS was that people end up in wheelchairs. My great aunt had it. And that was that was the only memory I had of her um was seeing her in family videos, films sitting. She was always sitting. So, you know, that was the vision that I had, and I thought, well, I can't how how am I going to live this life if if I'm totally incapacitated? So it was terrifying. And I felt really cheated.

James Dunn 5:03

Well, it sounds like you were really excited about embarking on this next phase of life with the kids at school and and new work opportunities for you, and it would have hit you for six.

Yvette O'Dowd 5:12

Yeah, and I it was so uncertain that I think with some disabilities it happens and that's what it is, and you go forward from there. But I was terrified I was gonna lose sight in both eyes. I was terrified that I might lose the ability to walk. You know, there's bowel and bladder um symptoms that can happen. There's just so many things with MS. It can be multiple disabilities um all at the same time and no ability to know what might happen. So that unpredictability would have been Yeah. Yeah. Very scary. Yeah, definitely. And still is.

James Dunn 5:59

So people often see the visible parts of MS, as you said, if somebody's in a wheelchair um visually deeply affected. But what are some of the hidden battles that people with MS may be dealing with on a day-to-day basis?

Yvette O'Dowd 6:15

You're if I've heard it once, I've heard it a million times, that I don't look like I've got MS, and I often wonder how I'm failing and what I should look like. But I experience all the really common symptoms. So I live with heat fatigue. Um yesterday was a good example. I was I was doing a talk to a group of parents and I just was just a wash with sweat just pouring off me. And that's then my body needs to rest and sit down, and I've got no control over that. I also get um loss of sensation in all sorts of parts of my body, so I'll lose uh feeling in my fingertips or feeling in the soles of my feet, and then I'll also gain feelings that aren't real, so I might feel like my arm's been burned with boiling water. I can tell you exactly what that feels like, even though it's never happened. And my brain is interpreting other sensations and trying to put a picture together based on prior experience. So you get all these random things. Um the other day I just got this buzzing all down my arm. There was nothing there, but my brain thinks something's happening. So there's all these sensory things. I've lost the ability to taste, I've lost feeling on one side of my face. Um, it doesn't affect the function, so it's different to say stroke where where um you know the face will droop, but I'll have no sensation on one side of my face. And that might last for six weeks or so and then goes away. And yet I look fine. I am a chronic fainter um spectacularly in public, um, much to the the disturbance of other people. Spend a lot of time lying on the floor going, I'm okay, don't call an ambulance, I'm fine.

James Dunn 8:15

Everyone's like, but the opposite of the you look fine.

Yvette O'Dowd 8:20

Yes, yes, yes. When I don't look fine, they're alarmed.

James Dunn 8:25

I think most most days I probably meet someone that says, Oh, you're looking well.

Yvette O'Dowd 8:30

Yeah, yeah.

James Dunn 8:31

And it's that awkwardness where it's like, well, I don't want to say I'm not, because that's just negative. But I also can't say I definitely am because that's not true. So it's just sort of l leads to a thing.

Yvette O'Dowd 8:42

Yeah. It's it's like you don't know don't realise how much you get asked, uh, oh, how are you? Like if I answer truthfully.

James Dunn 8:51

Your energy levels, they're they're impacted?

Yvette O'Dowd 8:54

Yes, definitely. Um I don't know if you know about the spoon theory, but um, we've only got so many spoons we can use in a day. And with conditions like MS, we can use a lot of spoons just getting up and having breakfast, having a shower. Um, if I have a hot breakfast and a hot cup of tea and then hop in the shower too soon, the heat fatigue kicks in. I have to lie down for half an hour before I can get dressed. Um the energy becomes something that um is finite, and so you choose what to use it for. And um simple actions that we all do every day can just take everything out of me. Um so I will choose not to do things so that I can use my energy for other things.

James Dunn 9:47

That makes a lot of sense. And it's interesting. I'm now remembering when I was first diagnosed with chronic fatigue syndrome, the specialist said that from an energy perspective, this is similar to MS. There aren't all the sensation issues, or there can be some. But I can completely relate to your spoons theory. I I see it as a battery myself, and it just doesn't get charged properly. Has a very small amount of charge each day, and yeah, you have to work out what you're gonna spend.

Yvette O'Dowd 10:16

And and just like your phone, if it's running too many background apps and it drains the battery extra fast, um, it's the same thing. So if I'm coming down with um a virus or something, that'll knock me out. I've just just come back from something I've had a cold for three weeks. Um my grandchildren had the same cold and they were better a few days later. Um, but that just knocks out my ability to do everything from making a meal to uh getting dressed. There's just no energy for those basic um activities of of daily life. I've had times when the fatigue's been so bad I can't sit upright. I try and I just have to keep lying back down again. And you can't explain it. It's not like being tired and needing to go to bed and have an early night. Um it's it's like your body just cannot function and just needs to shut down.

James Dunn 11:21

Yeah, absolutely. Uh I can only relate to that in relation to the chronic fatigue syndrome. And I know a lot of people in that community tell stories of people saying you're just tired, you just need to take a few weeks off and and take it easy. But it's it's a pervasive, severe fatigue that doesn't go away. It sounds like that's what you're experiencing. And I guess also that would impact things like your focus and cognition memory.

Yvette O'Dowd 11:49

Absolutely. I'm shocking short-term memory. Um, you know, when you've got to you they send you a code, you've got to take that six digits over to the other screen. By the time I get back to the other screen, I can't remember any of the digits. So I have to go back again and try to do it digit by digit. And that that my memory was my greatest asset, and it's become my weakest. And it's just so frustrating. Um little things like exactly where did I park the car, um, what day is it? Uh was I going to see you this week or next week? I used to be able to retain all that stuff. Now, if it's if my Google in my phone doesn't know what I'm doing, I don't know what I'm doing.

James Dunn 12:42

Yeah. I can relate to that. Everything is written down, isn't it? Everything everything that you're going to do is in your notes. Yeah. Yeah.

Yvette O'Dowd 12:50

Yeah.

James Dunn 12:51

And I it's good to have the technology to cope.

Yvette O'Dowd 12:53

Absolutely. I will get a surprise sometimes. I'll be like, really? Oh, I've got to go to the physio. And I've had no working memory that that's happening today. So I'd I just have to rely on all of those um tech reminders like multiple times. These things are coming up this week, these things are coming up tomorrow, these things are coming up in the next hour. Just repeat, repeat, repeat. I get lots of surprises.

James Dunn 13:26

I'm sure. That's a that's a good positive.

Yvette O'Dowd 13:30

It's a thing.

James Dunn 13:32

Have you ever felt any pressure to explain or prove your symptoms to others?

Yvette O'Dowd 13:37

Absolutely. Um in that five years between starting symptoms and being diagnosed, um, I had just gone back to work and I was working five days a week, which was a lot.

James Dunn 13:51

Wow.

Yvette O'Dowd 13:52

I was trying to follow like dietary guidelines for MS and increased exercise and all those things. I was also caring for my aging father who needed support and three children and you know, running a household and all these things. And so life was really hectic. And whenever I mentioned you know, to people, people I'd consider to be friends often, um, they'd like say off-handed things like, Oh, you're gonna talk yourself into it at this rate. Or it's just in your head. Well, it it is in my head because my immune system's eating my central nervous system. Um but you know, just insensitive or people trying to be positive and reassuring. Um about it it look, even even I sometimes doubt it, even with the diagnosis and treatment and evidence. I sometimes think, do I really? You know, because I don't look like someone that has MS. Um, so even I can start to give myself negative feedback, but other people's opinions are very powerful.

James Dunn 15:06

So it sounds like there are lots of symptoms and and a lot of challenges that you face. What sort of support have you got these days to help you out, given the impact that it is having on your life?

Yvette O'Dowd 15:17

There's a lot of uh focus on improved living to help reduce MS attacks. So I have an exercise physiologist who makes me go to the gym. I do hydrotherapy, um, I have regular physio um and uh I see my neurologist regularly. I've just uh finished a two-year course of a drug treatment, and I'm told I may not need any more drug treatments for my MS as I'm getting older. Um apparently aging, your immune system's not as good as it attacking you as it is when you're younger. Well, that's positive. But um, it's a constant work in progress. You know, um exercise is really beneficial to people with MS, but exercise can create fatigue, it can lead to heat fatigue. Sometimes I have to abandon a session just because I've overheated and I need to lie down. Um eating really well is important, but eating lots of fresh fruit and vegetables is a lot of hands-on preparation. And at the end of a very long day, when you're feeling absolutely wiped out, it's easier to have toast. Um, so I have support workers through the NDIS, and part of what they do is um prepare my fruit and vegetables so that I can just cook them, um, so that I'm not trying to stand there chopping things up. So it's just trying to maximize my energy to do the things that I need to do to keep myself going. So it's like a support team in the background.

James Dunn 17:23

Yeah, it's great that you can have that support now, particularly with the NDIS. Yes. So obviously there's been lots of challenges. Um, but it sounds like one positive that's come from the experience is that you're pretty focused on your general health that's outside of the MS, is it right?

Yvette O'Dowd 17:40

Yeah. I decided very early on that I can't control how the MS rolls out. But there's lots of health issues I can't control. Um, so uh I can be a very old person that lives with MS that hasn't died from heart disease, um, that kind of thing. Um I guess too, it it makes you more appreciative of how important our health is. Yeah. So I'm, you know, I'm up there with having all screening checks and I'll take every every everything that's offered to me because I'm not going to allow myself to get sick with something I might have been able to prevent.

James Dunn 18:27

Yeah, I can definitely relate to that. I'm much more focused on my general health than I've ever been. And yeah, I see that as a positive. So what do people who don't live with MS do you think most often misunderstand about their condition?

Yvette O'Dowd 18:42

I've got relaxing remitting MS, which is the most common. That means you can have a relapse, live with it, gradually fades away, can go back to whatever normal is. Sometimes there's a bit of a deficit. Um people are often more aware of progressive MS, where it just steadily gets worse and worse and worse. So uh they don't always understand that I might not be having a relapse, but I still have MS. So all that extra stuff is bubbling away in the background, the fatigue and the brain fog and things there all the time. Um and the relapses are just when this other thing happens. Um so when my third grandchild was three days old, I lost feeling in the sole of my foot, which I'd had before. But over the coming days it pricked higher and higher and higher. And within two weeks it got to my belly button. So I had no sensation on the whole of my lower body. And that was really scary. I was like, how high can this go? Yeah, will this go away? What if this is now secondary progressive and I won't get it back? Um that was terrifying. But again, no one could see this because of the sensation. I could still walk, I could still uh stand. Um, my balance was off a bit because we rely on that sensory feedback a lot. Um, but I was having this private meltdown, and yet it still didn't look like anything was wrong. Um, and I think that's what people don't understand that it is an invisible disability. It's all happening on the inside, but it's still real.

James Dunn 20:58

MS has been part of your life for about half of your life. How has it shaped your sense of identity and purpose?

Identity, Peer Support And Treatment Choices

Yvette O'Dowd 21:06

I was very, very determined right from the start that I have MS, but it doesn't have me. I saw that quote somewhere very early on, and I'm like, that's that's it. I will not be um my disease. Um, and I will not let it stop me doing the stuff that's really important to me. So I'll push through to do things with my grandchildren um because they're only kids for a short period of time, I can have MS later. Um and um I I look at everything as isn't this wonderful? I'm so glad I get to do this right now because I am aware of this thing hanging over me. And you know, if I could go back 30 years and tell myself that you know things now look a lot better than I was projecting them forward. I'd love to do that because I was worried a lot. Yeah. Um and, you know, good stuff's happened. Some stuff hasn't been able to happen. I I twice had to leave the workforce um because of uh the way it was affecting my body. Um so, you know, that didn't roll out as I might have expected. But that's okay. I've done a lot of volunteer work, which I might not have been able to do if it I'd always been full-time paid work. So, you know, swings and roundabouts.

James Dunn 22:40

Yeah, absolutely. And that volunteer work, the MS peer support work that you do, how has that um affected your own journey? Has that helped you?

Yvette O'Dowd 22:49

Yes, because I I was uh running the local MS group, which is a whole lot of people all living with the same disease, none of whom have got the exact same disease. Um people are very, very incapacitated by it. Um other people have really functional lives, and I think sometimes we could get really bogged down in our own experience and not realize that it doesn't have to look doom and gloom. We had a lovely um boy meets girl in my MS group, um, and they got married and it was just lovely. They found each other. Um so we we offered a matchmaking service on top of everything else. Um but yeah, it's it's about you can sit with a group of people that have the same condition as you, and you can complain about the things without people trying to reassure you or make you feel better or or downplay it, or all the other things that we do when we're trying to make someone feel better. Um we'll just all sit around and talk about the ridiculousness of of this condition. Um and peer support is exactly that. It's I my experience and your experience are walking along together. So let's share it.

James Dunn 24:22

Yeah, that's fantastic that you've had such good experiences there. And it is very therapeutic. And I'm sure you probably pick up tips from other people on potential treatments or things that just make things easier.

Yvette O'Dowd 24:34

Yes, even just like, oh, did you know you could apply for this or you could get this sort of help, things like that. Um, I guess it's insider knowledge um sometimes. Um, but we can talk about how different drugs have affected us. Um because we do have a range of treatments available now, but you've often got to choose between two or three that are presented to you, and you just don't know how they might affect you. Um, so talking to people who have used them means you've got a more realistic picture of what it might look like for you.

James Dunn 25:12

Yeah, and I think also because there are a few different options around, I find sometimes the sequencing of trying those treatments can be informed by other people in the community if you've hear other people saying, look, this one hasn't really worked for me and you can't really find too many people who have, then you might put that third or fourth on your list of things to try.

Yvette O'Dowd 25:31

And that's really helpful because trying things takes a lot of effort and you know, these are um quite invasive drugs. Let's let's not try, you know, a string of them in a row if we can be more selective about what we take.

James Dunn 25:47

You mentioned before about wanting to talk to your younger self. So if someone listening to us today has just been diagnosed with MS recently and is frightened about what their future might look like, what would you want them to hear?

Yvette O'Dowd 26:03

Don't panic. Okay, just take a breath. Um, it's not a catastrophe. Um and it's a really good time to have a condition like MS. Um the the treatments that we have now, the goal is that um you don't have a relapse. Um most of them are offering like a 50% reduction in relapses. But the goal is really if if you have a relapse in that drug's maybe not the best one for you, so we'll try a different one. Well, that wasn't that wasn't even on the radar. We now have some really strong evidence of what might lead to MS developing in the first place. So they're they're starting to use words like cure or prevention. Um so it it's it's not what it used to be. And um it's scary, but uh it's not as scary as it was in the past.

James Dunn 27:13

Yeah, that's a real positive. Is there something that you can still do today that you once worried that MS would take away from you?

Yvette O'Dowd 27:20

I really was worried about my vision. Um so by having three episodes like back to back, there was a really strong chance that another one would come along and I wouldn't get the return of my vision. Um that's not happened. I've I've not had um any more optic neuritis since last century. Um, so uh I was really scared that um I'm a visual person, so the thought of not being able to see, not being able to read, not being able to take photos, these are things that are really part of who I am. And that was scary. I would have been more comfortable losing the ability to walk than the ability to see, as it turns out.

James Dunn 28:14

So you've written a book called Granny Has Wobbly Legs. Can you tell us a bit about the book and what inspired you to share your story in book form?

Yvette O'Dowd 28:24

There's a lot of groundhog day in life, and my grandchildren are the same age spaces and gender that my children were. So I had girl, girl, boy, and my daughters had girl, girl, boy, and they're the same age gaps. And so I found myself explaining to another generation why these things were part of my life. Um, and uh trying to reassure the children that this is okay and not scary, but my body does some really silly things. Um, and so I I focused on describing these things in ways that they would understand. And one that we've come up with that's just become part of how we communicate now is if everybody throws questions at me and demands all at the same time, I describe it as you you're all throwing ping pong balls at me. Um, because it just feels like I'm being bombarded and my brain just can't cope with that. So, so uh I've found ways to explain how I experience these different symptoms, but also to reassure them that it's all a bit funny and it's not something to be scared of and to just try and normalize it for them. Um I've explained that you know the cable on my charger is a bit dodgy, so the messages don't always get through. Well, I couldn't tell my own children that. So technology's been helpful there. They understand that I need to recharge my battery more often. Um, so things like that have allowed me to help them to understand and to do it without frightening them because children are scared of what they can't understand. Um, and they're scared of what might happen, they're scared that it might happen to them. Um, and they worry about what nobody tells them. So we need to just be very matter of fact. Sometimes my legs are wobbly, um, sometimes my body just overheats for no reason. Um, sometimes I can't remember what I was talking about. Sometimes I just need to sit down or lie down. Um, and they just understand that that's part of my my brain being silly. Um and I thought, well, if I can help my grandchildren understand, then I can also help other people's children understand what it might look like for them.

James Dunn 31:17

That's great. So you you've really helped to normalize condition, as you said, so they're not frightened. And I love your analogies there with the um charging cable being frayed and the and the and the battery. That's a great way of explaining that to me.

Yvette O'Dowd 31:33

Sorry, technology has helped me explain it more easily to a second generation. Who knows what I'll be able to use for my great-grandchildren. Maybe I'll just explain to them that this is a condition nobody gets anymore.

James Dunn 31:49

That would be great. That's the dream, isn't it? So obviously your peer support volunteering has helped you on your journey. Sounds like the book probably has as well. Just again, part of that therapy for yourself.

Yvette O'Dowd 32:03

Yeah. Yeah. Um, I've also um had counselling with a psychologist to just help to not be angry with yourself for this situation. When you've got um an autoimmune disorder, it's no one to blame. The enemy is your body. Um and it it thinks it's doing the right thing, but it's just completely misread the situation. Um, so there's no you you if you get angry, it's just angry with you, and that doesn't do any good at all. I can be angry at the situation I'm in. Um, but there's no one to blame. I didn't make this happen to myself. Nothing I did or didn't do made this happen. You've just got to be able to work your way through those feelings sometimes.

James Dunn 33:02

And it's really good that you've got the support to help you do that because it's hard sometimes to be able to process those thoughts and having a third person objectively look at it, particularly someone trained like a psychologist, is is great. I've certainly benefited from that as well. So one of our podcast community members has a question, which is what are your favorite accommodations or accessibility measures that have helped you with MS?

Yvette O'Dowd 33:27

Do you know? Um, it's simple things that may not look like they're disability specific. Gosh, I love public seating. Absolutely. Oh my God, if I need to sit down and there's nowhere for me to sit down but the dirt under a tree.

James Dunn 33:47

Um it's raining. That's right.

Yvette O'Dowd 33:50

Oh, it's raining. Um, yeah, we go places and um all the all the seats are in the sun. Well now I get to sit down, but I'm going to overheat. Um, so just really well thought out public seating can make such a difference. Um, air conditioning, um, buildings that are too hot and stuffy can really be feel quite threatening. Um and I will often use my my wheelie walk-up when we go out for a day. Um it's amazing sometimes. We still have shops you can't maneuver around um with a mobility aid. And it's not true anything other than lack of awareness. Um, the people have set those spaces up have no idea that you can't fit through. Um and I've walked out of shops that I really would have liked to have browsed and maybe bought something, but I can't work walk around the space. So just those kinds of things, they're not big infrastructure that that needs lots of investment. Um, it's just looking at the world through the lens of someone who might just need a little bit of extra support.

James Dunn 35:15

Absolutely, which means you need people who have those challenges involved in that design process. And I think that's happening more. And I'm sure that's the reason why these accommodations are getting better. I absolutely love your public seating uh tip, and I think it's probably mine as well. And I know one experience I have with supermarkets, I think it's great that they've now had for a few years seating on the outside of the checkouts so that if you need a break, you can sit there. It'd be great if they had them on the inside of the supermarket too. So you could have a break while you're doing some shopping.

Yvette O'Dowd 35:50

No, um that's a big walk.

James Dunn 35:52

Yeah, that's right.

Yvette O'Dowd 35:53

You know, um it's it's just no one thinks of it. And we we need to ask for it. We need to give them that feedback and say, hey, did you know sometimes we need to sit down?

James Dunn 36:06

Yeah, it's two-way, isn't it?

Yvette O'Dowd 36:07

Yeah.

James Dunn 36:08

So can you tell us about your connection with the Sunflare Initiative and what made you feel it was something you wanted to be part of?

Yvette O'Dowd 36:14

I first saw it, someone was doing a promotion somewhere, and I was like, oh wow, that's that's me. Um and uh I embraced it straight away. And it's been really interesting to watch the awareness of it growing. Um even uh last Christmas we had a local event and um we were going to watch a show in the theatre, and the woman that saw my sunflower lanyard almost grabbed me by the arm and whisked me into a seat. It was like, thank you, okay. Um, we didn't need to have that conversation. Um, you don't need to explain yourself. And I want to reach a stage where everybody recognizes that symbol instantly and knows that despite appearances, um, you might need something extra. You may need to sit down on the train. Um, you might need to um sit closer to an exit or sit under the air conditioner, or you know, you don't have to explain all the why. You can just explain the what. And I think it's just been a really great experience so far.

James Dunn 37:37

I think you you've hit the nail on the head there with one of the big benefits, which is not needing to explain yourself, which is exhausting. Um, can be demoralizing for some people, some occasions. And I think that's one of its big strengths. You mentioned the train there as an example. Has there been any other specific moments where wearing the sunflower made a real difference to you?

Yvette O'Dowd 37:58

Um, I think when I am out and about, and sometimes I will see people look at it and smile, which isn't making any accommodations, but it's just like I see you and I I understand. And um it feels like then that person's an ally out in the world. So if I did need support from somebody and I was out without you know my family or or anyone, that there are going to be people who will be aware of what it is. And if I show signs of needing help, um they would be the people to step forward. So I think it's just that it's like a global understanding that not every disability is really, really obvious. And that the ones that aren't obvious are still valid.

James Dunn 38:51

Yep.

Yvette O'Dowd 38:51

And can be as significant.

James Dunn 38:54

Yeah, absolutely. And you're absolutely right about the goal. I think it is to make sure that the the sunflower symbol is as well recognized as the wheelchair accessibility symbol in the future. And I think that's achievable. It's it's growing rapidly, and I'm sure you experience this as well, that it's just more and more people every sort of month that passes that recognizes and give you the smile or come up to you to see if you need help.

Yvette O'Dowd 39:18

And it's great.

James Dunn 39:20

Always our final question. You've given a few examples already, but what's one small change that individuals or organizations could make tomorrow to improve the lives of people with MS or other life-changing non-visible illnesses?

Yvette O'Dowd 39:33

Being aware that looks are deceiving. Just don't assume that everybody is able-bodied. That's that's all you need to do. You don't need to change your your behavior. You don't have to do anything differently, but just go about your normal life, expecting that you know, some people are dealing with something that you can't see. And just be kind.

James Dunn 40:02

That's a really simple tip, but a a really good one. I think um, like you've said a few times today, there's some really simple things that can um be done um and approaches people can take that make a big difference to other people.

Yvette O'Dowd 40:15

Yeah, there's one simple one that's come in in recent years on our train system. Um, there are chairs that are a different colour. Um the standard ones are blue, and then these ones are orange, and the expectation is that you would give up an orange seat for a person that had additional needs to sit down. Well, that combined with the lanyard, um, they they could put on um the signage um the the sunflower, and then you wouldn't have to even have the conversation say, excuse me, do you mind if I sit down? Um, that would be part of the awareness. And nobody would have to do anything differently. It would just be integrating that into the existing system.

James Dunn 41:02

Absolutely. I think that is the direction it's heading in, and I'm hoping that that will happen soon enough. Thanks, Yvette, so much for joining us today on the podcast. It's been great talking to you. Loved your tips, um, particularly those really simple ones that everyone can be aware of. I love that you haven't made MS become the sort of headline of your life story. Um, and you've got some great tips about how to make sure that it doesn't. I also love how you've shared your experiences with the next generation and you're communicating to them how it impacts you. Because I'm sure that will help in their relationship with you, but they'll apply that across the border in life to other people with challenges that they can't see or don't understand. So that's having a real positive impact. So well done on on the book. That's great. Thank you. And and all your support to um your fellow um MS people over the years. I'm sure that's been having a big positive impact on a lot of people.

Yvette O'Dowd 42:05

Thank you. It's been a ride.

James Dunn 42:08

Thank you for joining us for another Sunflower Conversation. Please keep the conversation going via our website, hdsunflower.com forward slash AU, on Facebook at Hidden DisabilitiesANZ, on Instagram at hidden disabilities underscore ANZ, and on LinkedIn at Hidden Disabilities Sunflower-Australia and New Zealand. You can also visit our website if your organisation or an organisation you know is interested in becoming a Sunflower member. If you would like to submit a question for one of our guests to answer on a future episode, please direct message us on socials or email us at hds events at Bailey House. That's B-A-Y-L-E-Y-H-O-U-S E.org.au. Please help, have patience, show kindness to others, and join us again soon, making the invisible visible with the Hidden Disability Sunflower.