100k

00:07 S1

This is Studio 1 on Vision Australia Radio.

00:16 S2

Hello, I'm Sam...

00:17 S3

And I'm Lizzie.

00:18 S2

And this is Studio 1, your weekly look at live from a low vision and blind point of view - here on Vision Australia Radio.

00:23 S3

On this week's show, Vision Australia is running its 100 K Your Way fundraising campaign in April.

00:30 S2

I talked to two of the ambassadors who have very different approaches to fundraising and blindness in general. I also catch up with VA's fundraising and marketing manager, Ian Finlayson, who explains what all this is actually about.

00:43 S3

As we always say at this point, please do get in touch with the show. Whether you have experience of any of the issues covered on this week's episode of Studio One, or if you think there's something we should be talking about. You never know. Your story and insight may help someone who's dealing with something similar.

00:59 S2

You can email us - studio1@visionaustralia. org - that's studio number one at Vision Australia dot org.

01:05 S3

Or feel free to drop us a comment on our Facebook page at facebook.com slash VA Radio Network.

01:14 S2

So to kick things off, I'm joined by Dale Pierce. Hello, Dale.

01:19 S4

Hey. How are you today?

01:20 S2

I am good, as early as it is today. Your journey with blindness has been a fairly quick one, from what I gather.

01:28 S4

Yeah. So that almost two years ago or just over two years ago... I'm 49 now, so at 47, lost sight in my left eye... overnight, it was a central retinal vein occlusion. So basically, a stroke in the eye is the simple term. Went to bed with a headache and woke up with no sight in my left eye. Worked through all that process, through doctors and some laser surgeries and things. And four months later I was at work and the right eye started to let go. So I was awake at that time, so rushed to the hospital, got some treatment, so we saved a little bit of sight in that one. That was coming to May of 2023. So we're not even two years into being legally blind yet. So yeah, it's been a very, very rapid journey.

02:16 S2

Wow. I mean, that would be quite, quite an adjustment as well. I mean, you... I'm presuming you had normal vision to start out with.

02:23 S4

Yeah. Oh, well, glasses like, you know, half the population, but yeah, definitely I was, I had normal sight and was happily running my own business as a freelance chef and consultant in the hospitality industry, and was ticking along fantastically. And then things went slightly pear-shaped.

02:42 S2

I can imagine. So you've got a small amount of vision. Is it workable? I mean, is it something that's it's... all vision is useful, but I mean, is it useful for for you now doing what you're doing?

02:52 S4

Yeah. So I had to quit my job because I was a chef by trade, so the hands-on stuff was not practical. It's not safe for me to be in the commercial kitchen, but I'd still do a tiny little bit of consulting here and there to help some people out. And it's about relearning and adjusting to life, I guess, as a fairly significantly visually impaired person. So, you know, I've got all the tech around me that helps me navigate the world and all those type of things. I've got my seeing eye dog, who I've had for seven months and she's amazing. 

So in terms of that, I can get out and about and be independent and all those things. Learning computer skills is the the biggest step that I'm finding so that I don't have to look at a screen. So it's learning to use Jaws systems and things like that so that I can not stress the eye out anymore, so that when I do go into some more serious work, that I'm not going to lose any more sight if I can help it.

03:52 S2

Well, yeah, that's something that the big, wider world doesn't really understand much... is eyestrain. So the less vision you have, the more you've got to use what you've got. And yes, you can get migraines from it. And the ever-lovable visual migraine. Have you had one of those yet?

04:07 S4

Oh, yes. So... numerous. And... I'd started work, and last year for a little bit, just to test the waters and the... I actually dropped sight significantly through that process. And the doctors went, Yeah, you probably should sit back down and rest it for a little bit. So we're back in the healing process and you will restart the journey on employment, like serious employment, down the track.

04:33 S2

So I'm guessing Vision Australia has played a fairly large part in the last few years of your life.

04:39 S4

Yes... Mum's actually legally blind herself. She's got macular, so... and late 60s, early 70s she got macular. So I've been dealing with Mum's vision loss when, even I had sight. So talked about Vision Australia lots. Had a little bit to do with Mum's work through... with them to help with magnifiers and some OT work and things like that. So I knew about VA anyway, and as soon as the sight dropped significantly and that day I got told, Yep, it's not coming back, you're legally blind, it was pretty much straight to VA on the phone. Let's... what do I need to do? Help with NDIS, help with Centrelink, all those things. And then it was assessments to see what services I could access so that I could start being independent again. 

So VA has been a huge part over the last couple of years, and part of that as well is peer support. So I'm also I'm very much an advocate. I have been in hospitality and I went, Well, I might as well continue that in my new life as vision impaired. So I'm on the client reference group for Vision Australia as well. I've jumped into that very quickly. And it's not just about me speaking up and going, This is what vision impaired people need, but it's also the peer support I get from the others in the group that are amazing from, and all sight levels from 100% blind to probably a bit more than what I've got. So it's fantastic to be able to chat to that group regularly as well, so as a peer support factor.

06:16 S2

I think that is probably the most important thing. I mean, I've went through the special education system in the Northern Territory, and the biggest thing I got out of that was dealing with other people with a vision impairment. And because all the eye conditions were so different, we sort of learnt tricks and tips off each other. So I mean, yeah, it's... nice to see that that is still very much a factor in... well, for want of a better word, new blinds like yourself.

06:44 S4

Yes... and you can feel free to call me that. I'm a newbie in the world compared to most people in the group and all of that. So yeah, it was, it's... I'd start to learn things and I guess I'm... because I'm quite out there, I'm still teaching. I may be throwing some ideas at the others that they go, Oh, you did that. And I'll go, Well, I give it a shot. So... I think so we sort of mix and match in how we go, but it's a really, really amazing group that I'm in, and it's led me to a lot of new contacts within Vision Australia and also the blind - low vision community as well.

07:17 S2

Has there been any surprises on your again journey? So anything that sort of happened or that's really sort of surprised you and you're going, I really wouldn't have thought that... would have, you know, been the case or, you know, whether it be good or bad?

07:32 S4

Well, I guess the big thing that's always got me is you actually know, there's humility and great humanity in people of all ages and all races and all everything, because as an independent person, I never public transported it. I was in my car, I was... I never asked for help. I was a man. I say, that looks like... so I never reached out as much as what I have now. And the beauty of being more vulnerable, I guess, is that you have to ask those questions of people you don't know in the street, and you can't see their face, and you don't know what's going on necessarily. 

And I've had anything from teenagers, guys and girls all the way to the elderly and anything in between... the burly construction workers, you name it all go, Hey, do you need a hand, or are you okay? Or, you know, and most of the time I'm okay. But sometimes I go, I'd really love a hand, you know? Or Can you point me in the right direction? So I guess that humanity that I think a lot of us probably think is lost a bit because, you know, some generations go, Oh, that generation's just, you know, they're insular and do what they do and don't care and all that... but reality is, they do. It's just a matter of no-one asks because they don't think they need to.

08:58 S2

Early next month, Vision Australia begins its fund raising exercise - so 100k Your Way. And the idea is to fundraise, to get sponsors, to sort of find out how people like us get by, because we tend to exercise a lot more anyway. So, but you're doing things just a little bit differently, aren't you?

09:18 S4

Yeah. So I exercise a lot. And I found running is a very useful tool for me, not only to clear my head, but it obviously helps my cardio system and my vascular, which is part of what went wrong with my eyes to start with. So that's how I actually got into running. I wasn't a runner before slight loss. So this is very new to me as well. So I get out and I run and, you know, jog and do trail running and all the weird and wonderful things out there. And I was fortunate enough that because of my work with Vision Australia that they know about me and what's going on, and they asked me to be one of the climate ambassadors for the Vision Australia's 100 cool way, which is amazing. 

And... because I can do 60 or 80 Ks a week a lot of the time with my training, I think, why don't I just do it all in one day? So I've put myself a serious challenge of doing the whole 100km in one day on a treadmill. And my support worker, who's my running guide as well, is joining me. So we'll be doing 200 Ks. 

S2

Wow. 

S4

Mm, at a minimum. And he... and hopefully we get a lot of people at the gym that we're doing it at in Ballarat, which is the Planet Fitness at Delico. They have come on board and been amazing to open up their doors for the entire day, free of charge to anyone who wants to come down. And hopefully we do a lot more than 200 K's. But the aim is to start at midnight, and we're not going to stop until we're there. So we've got our breaks and lunch and dinners and probably a nap somewhere in the middle. But the aim is to be finished, hopefully around 6 p.m. at night.

10:59 S2

Having been a runner myself, there are some benefits to it, but also, well, my ankles, I got to admit, are shot. How is the soft tissue injuries been going?

11:08 S4

I have had some minors - and oddly enough, about three weeks ago I actually in a trail running training run that I had... at a local sort of Mount Buninyong, which is the local hill here in Ballarat. I actually took a bit of a rolled ankle, so I've been doing that a little bit. But at the same time there's probably not a bad thing because I was pushing pretty hard and a bit of a rest has helped the rest of the body catch up, I think, to be honest. So yeah, so I'm going to be fighting fit ready for the 1st of April. And... yeah, we're just going to take our time. And if it takes a little bit longer than we expect, that's okay. We're not setting a hard time limit of this is what has to be done. So if I need to take an extra hour's rest or walk it a bit slower, or jog a bit more, or whatever it may be, that's what the day is going to be.

12:01 S2

So if having a disability teaches you one thing and that's limitations and and the beauty of having a having those limitations is knowing how to surpass them as well. I mean, that's that's been my observation anyway. I mean, what do you, what would you think of that statement?

12:13 S4

Totally agree. Most people have resilience built in. Once you start having disability, that resilience factor amplifies, I believe because you do have to figure out, overcome, adapt all of those things and just push through, whether it's a system, whether it's protocols, whether it's just life in general. Some days to get to the shops, you've got to figure it out. So when I build that into my running and stuff, I'm not fast. I know I'm not fast. I plod along and do my thing, think. But at the same time, I figure it out and I get there. 

And that's I guess the, like the whole factor is I can do it. It's just a matter of how long everyone can have a shot at it, and maybe not the full 100 Ks if you're not ready for it. But everyone can jump on a treadmill and do a kilometre, and that's what I'm hoping of that day. People can go, He's done that in a in a day. Let's get our 100 Ks done. Let's throw some money at Vision Australia so that they can support other blind, low vision people.

13:17 S2

And of course we will be supplying links to your page on the on the podcast notes. And so people can keep an eye on how Dale goes from one runner to another. Dale, it's been nice speaking to you and... run.

13:30 S4

Well, yeah. Thanks so much. Appreciate it.

13:34 S1

This is Studio 1 on Vision Australia Radio.

13:40 S2

We are joined by Ian Finlayson who is the general manager for fundraising and marketing. How are you today? 

S5

I'm very, very well. 

S2

I understand it's been a busy day.

13:50 S5

It is always a busy day at Vision Australia, Sam, we have high ambitions and lots to achieve.

13:57 S2

So this 100k Your Way - how long has this been running for? How many years?

14:03 S5

You know, around about its third or fourth year. And it is a... wonderful, wonderful activity that we encourage the community to participate in, whether you're blind or have low vision or you've been a supporter of Vision Australia's for a long time, it's a wonderful activity. Obviously, it practices great physical fitness. The challenge, as the word says, the event name says it's 100k Your Way through the month of April each year. So we're... actively recruiting participants right now, who will basically take on that challenge. And they can walk, run, swim, jog, roll if they need - 100 Ks, Your Way as the event name so aptly says.

14:48 S2

Is there a general idea behind this? I mean, how does this relate to, say, Vision Australia clients?

14:52 S5

Certainly. Well, Vision Australia is a is a not for profit organisation and we rely on about 40% of our annual turnover is through the generosity of the Australian public. So there's many ways to support an organisation, whether that's a donation to an appeal, whether that's participating in our community events and or supporting our philanthropy efforts or through corporate sponsorship, etc.. So this is just one of the various ways that people can show their support of Vision Australia, raising vital funds. 

We we need to raise, probably in the vicinity of about $45 million every year to support the services that we provide to about 40,000 people across Australia, many of whom are not eligible for either, say, the [?locks] of the NDIS or covered by the Commonwealth Home Support Program. Our desire is to get services and products in people to people in need, regardless of their funding.

15:56 S2

So are you taking part in it?

15:58 S5

I am, I am, I'm an avid golfer, so I believe that golf actually qualifies. So I'll be putting my... sort of steps in on the golf course, but I'll also do some... rather interesting nature walks during the month of April. My days as a runner, Sam, are long gone.

16:18 S2

I don't join a club... well, I did last year was, well, it didn't really change my routine at all and still managed to get up to 100 - consisted of simply walking to and from work, as it were. I mean, so, I mean, the life of a blind person tends to mean that you do a lot of walking anyway. But have you heard any interesting stories of yourself? I mean, we've already spoken to Dale and we've spoken to Jess, who are approaching things from extremely different angles, but have you heard anything of any other interesting ways that people are going to their 100 Ks?

16:49 S5

Oh, I think there's... we we actually were... trying to encourage in our first couple of years as people taking different pathways each, each and every year or indeed, you know, not doing the same walk every day, putting a little bit of variety into it. So, you know, I travel reasonably extensively for work, through our vision Australia being a national organisation. So you might find me on the Burleigh Heads headland, walking a... nature walk. Not today, of course, with...  obviously, Cyclone Alfred. But, you know, I might... sneak a walk in there or I might be down on the Mornington Peninsula doing my walking or playing playing golf on the Melbourne Sandbelt. So there's many ways that you can walk 100k.

17:36 S2

Well, if anyone is listening and wants to either take part or donate, is there any way they can go to either on the internet or wherever else?

17:45 S5

Yeah, certainly. So our website where all the information is present is 100kyourway.org - indeed, that's the best place for you to go and find that find the information. What we're looking to do is to raise vital funds that can support... Australians of all ages and support our services to those people in need, raising vital funds. Last year, we had close to 1000 people participate, so we'd love to be able to meet and exceed that level of participation. And you can do it in many ways. You can do it as an individual or as part of a team. 

And indeed, we've had a number of people within Vision Australia. In fact, Vision Australia radio over in Perth... had put a team together and were one of our most prolific fundraisers last year. So, you know, our shout out is to businesses, also individuals or teammates and sporting clubs or indeed work colleagues across Australia getting together and taking the challenge on together. And... as I said, often teams doing this together will encourage each other to to go that extra mile, or should I say kilometre.

19:03 S2

Indeed. Now the fundraising has started already, but the aim is to make this a major thing for April, I believe.

19:12 S5

You're right. So the actual physical challenge itself... well, it starts to tick over on the 1st of April. So the challenge is 100 Ks your way in the month of April. Many people meet and exceed that target.

19:27 S6

Ian Finlayson, thank you so much for joining us and good walking.

19:31 S7

Thank you. Sam.

19:35 S2

Hello, Jess.

19:36 S8

Hello. How are you going?

19:37 S2

I am specifically good. But how are you? And how is Lena?

19:43 S8

Yeah, we're doing really well. Lena actually started kinda yesterday. Three year old. Kinder. So we're just navigating that and... getting her used to... being a big Kinder girl.

19:55 S2

Before Lena was born, had you had much to do with disability or blindness?

20:01 S8

Not directly. Before we had children, I was working as a pediatric nurse, in Melbourne. So I had encountered a few children here and there that had blindness in addition to what they were coming into hospital with. Some were having, you know, squint repairs and that sort of thing. And so I hadn't really had much to do other than that, other than sort of caring for kids, having surgeries and things. But as for anything else, not really. No.

20:30 S2

I'm presuming that this whole experience has been quite an eye-opener for you.

20:35 S8

It really has. Yeah. It certainly. Yeah, we've learnt a lot through it and we're still learning every day.

20:41 S2

I... and I've talked to my own mother, and when... and she said people seem to think that if you have a disabled child that it's... you feel limited, but it's quite the opposite. It actually opens up... the world to you. Have you found the same thing? Have you learnt a lot?

20:58 S8

Oh, 100%. You know, with with Lena and, you know, learning the way that she navigates the world, it's really opened up how we can do things for other people to make their lives easier with disabilities. And, you know, we're thinking about a lot broader things than what we usually would if we didn't have Lena.

21:18 S2

And I'm guessing you've learnt some of the hurdles that people like ourselves face.

21:22 S8

Oh, 100%. Unfortunately, yes. But... you know, we try and embrace the lessons that we learn in those... and what we overcome and try and teach our kids, you know, that we can do hard things and just to keep going.

21:36 S2

So maybe you can talk a little bit about Lena. So when she was born, how long was it before she was diagnosed?

21:42 S8

So Lena was born in 2022. And she came out with a mop of silver white hair and we heard sort of the whispers around, you know, the midwives and things. And then the midwife came in and said, We'd really like to get two pediatricians in to have a look at Lena. And, you know, we think she might have albinism. And we kind of went, Okay, well, you know, if she does, she does if, you know. Yeah, great, get her checked out. That's fine. So the pediatricians came in and stripped her off and checked her over for about 20 minutes to half an hour. And they just sort of looked at us and walked out and left us with this screaming baby. 

And the midwife goes, No, she doesn't have it. They've said she doesn't have it. And we went, Okay, no raises. Oh, thank goodness. You wouldn't want one. You wouldn't want to, you wouldn't want a baby with albinism. Oh my God. Just thank God. And we kind of went Oh well she doesn't have it. Okay. No worries. And then we got to six weeks old. And being a pediatric nurse previously, I was... and she's our third baby, right? We're sort of left thinking her eyes aren't doing what our other kids were doing at this age. She wasn't tracking objects. She wasn't making eye contact. So, yeah, we headed off and got some babies for an ophthalmologist and a pediatrician, and and by the time we saw them, Lena was 20 weeks old.

23:04 S2

So what was the role then of Vision Australia in the earlier times and also now?

23:09 S8

So Vision Australia, we were in contact with them really early on in the diagnosis journey, and they basically just gave us so much reassurance, early intervention strategies, how to make our home work for Lena, you know, blinds, you know, ways that we could reduce visual clutter, reducing eye fatigue for her even at an early age, just so that we could really get her kicking goals right from the start. And they've just been with us ever since. So it's been amazing putting us in contact with other parents, support groups, getting us along to play groups, song play classes, even over zoom. 

Because we we don't live near Vision Australia's head office, where they do have the playgroups. It's a bit of a drive for us. So making it accessible over Zoom so that we could even just do song play with Lina with the Vision Australia group. So it's been... fantastic. It's been invaluable. We couldn't put a price on it, honestly.

24:08 S2

Has there been anything that's actually surprised you for good or for bad, about one the services available, but also about life from a blind and vision impaired person's point of view?

24:21 S8

What surprised me is Vision Australia is just how much they can give us with resources. You know, they've offered us family counselling. They've offered like the early intervention. They offered just so much at speech on [?em], you know, all these different services that we wouldn't even have thought of if we didn't have Vision Australia guiding us along the way and saying, you know, Lina's really good with this, but what do you think about this? Do you think maybe we could get her to see an OT? 

Maybe, you know, even as a nurse, when it's your own baby, you're just, you're not thinking. You... just want to do everything you can. And without Vision Australia, you know, giving us all these options and all these resources and all these services and just even the support groups, you know, talking to other parents with kids with vision impairments, it's just it's a whole nother world that you just would not have thought of unless you were actually living it.

25:20 S2

And yes, that's on the other side of things, having... a vision impaired child, has there been anything that's actually really surprised you again, for good or for bad?

25:27 S8

Lena is... she's amazing. She is so stubborn and so capable and just nothing stops her. Regardless of the vision impairment she will... she does have the most severe, she has.. okay, 1A - so the most severe form of albinism. But unless I told you if she had a beanie on and you wouldn't even know if you didn't see the white hair. If you didn't know, you wouldn't even be able to tell because she just tackles literally everything head on and does not let anything stop her. 

And as for the negative is just maybe just trying to change people's minds of like the stigma of having a child with albinism. We live in a fairly small town and, you know, we we take her out to the shops or we're at the park or something and, you know, people are like, Oh, is she a, you know, and they use a word that we don't really like to use... and we kind of have to step back and advocate and educate and it's just yeah, some people have really disappointing views and opinions on people with albinism, you know, that they've might have pulled back from their it tends to be older people and you know, they always go, Oh, I went to school, I went to primary school with one of those. 

And you know, just one of those. And you just think, Oh, she's a toddler. You know, she's a... little girl. She's still a little girl, regardless of all this.

26:54 S2

Well, one of the perks of being a parent with a visually impaired child... and I'll tell you a personal story. Here was... some of the earliest photos that I've seen from my own mother was me, apparently after I snuck out to a playground. I'm all of what, one or something like that. But I couldn't see to my... standpoint, I had snuck snuck out. But of course, my mother had eyes on me the whole time, and so I was able to see me sneaking into the playground, playing on the the equipment and took a few photos, and I was obviously completely oblivious of it. Have you had any experiences similar to that?

27:33 S8

Look, Lena does like to get herself into mischief. There's been times that we've... we recently moved house, and I was using a stepladder just to clean, you know, walls and bits and pieces. And I watched her just climb this ladder. Just didn't think anything of it. Just felt her way through it. And all of a sudden, she was at the top and she went, Look at me, man, look what I can do. And I thought, Oh, you're giving me a run for my money. You know. But she just, you know... we have a swimming pool. She just launches herself off the edge of that into our arms. Doesn't even care if we're going to catch her or not. Just... she just gives it her all. She's just... nothing stops her.

28:16 S2

She sounds like an amazing person. And I hope that she is allowed to expand that fearlessness. That... sounds like... I mean, it sounds like you are also wonderful parents as far as that goes, allowing her to experiment and try new things.

28:32 S8

We... just sort of we've never labelled or limited our other two children who don't have albinism, so we just don't see why we need to try and put Lena in this box of, You can't do that. You shouldn't be doing that, you know. Unless it's dangerous, of course. But, you know, we're not going to say to her, You can't do swimming sports at school because, you know, you've got a visual impairment. You can't take a dog for a walk because you've got a vision impairment. You can't... we're not going to be doing that. It's just... not the way. We just want her to have every chance to experience everything that we can give her, and that she wants to try to do.

29:10 S2

So... let's move on to the 100k Your Way. So you're taking part in this event. What are you up to for April?

29:19 S8

Yeah. So we've been slowly chipping away. We're getting a bit of an early start. It's been really good actually. It's getting my husband... a bit more motivated to go for walks and runs and things like that. So it's been fantastic. We're just really looking forward to it being really successful for Vision Australia.

29:35 S2

Well, we'll of course post a link to your page on our podcast notes and... well, I wish you all the luck in the world as far as this goes for all three of you, I suppose. Or is the entire family taking part?

29:47 S8

We're all taking part. So the five of us, plus we have some family and friends who are jumping on board. So it would be really good, it'd be really good. We just want to be able to give back to Vision Australia, because they're going to be in our lives for the rest of Lena's life. Like, this is what we we just feel is the bare minimum that we can give back to Vision Australia for doing so much and continuing to give so much to us as a family. For Lena.

30:13 S2

Thank you very much. It's been a joy talking to you.

30:16 S8

No worries.

30:17 S3

Thank you.

30:19 S2

That's a wrap for this week. Thank you to Jess, Dale and Ian.

30:23 S3

And of course, a thank you for listening.

30:26 S2

As usual, you can find this episode on Apple, Spotify, Google or your favorite podcast platform.

30:31 S3

On next week's show, we'll be chatting with Holly Andrew, who is the director of Abundance Productions, about how her company supports artists with a disability.

30:41 S2

But between now and then, please do get in touch with the show. Whether you have experience of any of the issues covered in this week's episode of Studio 1, or if you think there is something we should be talking about, you never know - your story and insight may help somebody who's dealing with something similar.

30:55 S3

You can contact us via email at studio1@visionaustralia.org - that's studio number one at Vision Australia dot org. Or of course you can search for us on your social media, whether that be Facebook or Instagram by looking for VA Radio Network. We want to hear from you.

31:13 S2

Until next week, bye for now.

31:15 S1

Vision Australia Radio gratefully acknowledges the support of the Community Broadcasting Foundation for Studio 1.