Melbourne Disability Expo

S1 (Speaker 1)

This is Studio One on Vision Australia Radio.

S2

Hello, I'm Sam.

S3

And I'm Lizzie.

S2

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

00:22

S3

On this week's show...

S2

I catch up with Ben Pettengill and Mike Rowles, known to some as blind and legless.

S3

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

S2

You can email Studio One at Vision Australia-dot-org, that's studio1@visionaustralia.org ... Hello, Lizzie.

S3

Hey, Sam, how are you going?

S2

I am good, this was a longish interview and it went pretty well. Except someone was missing. Where did you get to?

S3

Well, it happened on Wednesday morning. And of course, there was. That was the day that the famous Optus outage happened. So I had no service, no way to connect, and I was fuming.

S2

How did that affect your day?

S3

Well, I had to go to walking group afterwards. I couldn't get in touch with any of the volunteers or anybody else on the walking group to coordinate where we were going to start. I couldn't get my Strava going, couldn't read messages, couldn't do bank transfers. It was a whole debacle.

S2

So do you guys rely mainly on your mobile phones, or do you have any form of landline, say, or internet? At home?

S3

We rely on our mobile. We did have internet, but oddly enough it decided to be sketchy that day as well. So not good.

S2

So without any more adieu, let us now hear from Ben and Mike. Coming later this week we have the Melbourne Disability Expo. Joining me are Mike Rolls and Ben Pettengill, who will be doing a presentation. And I believe you guys are the ambassadors for the Expo as well.

S4

We absolutely are certainly glad to be here with you, Sam. Thanks for having us.

S2

So a disability expo, does that mean that you're showing disability?

S4

I wouldn't say we're. Well, yes, we're showing it because we've got it, but we're we're probably more representing. Right.

S2

So. So it's not a case of look over there. There's a guy in a wheelchair. Look over there. There's a... I'm getting this completely wrong.

S4

Then knocking it completely wrong. But we want to do it in a much more meaningful and and authentic way, rather than that sort of old school tokenistic way of like you say, let's put a guy in a wheelchair and a guy with a guide dog up the front of a disability expo and go right there. The couple of people with disability come on in.

S2

So the expos I've been to usually have it cover a wide degree of things, from adaptive technology to also employment options as well. Is there anything different at this year's expo?

S5

I've been to a few of the Melbourne Disability Expos. They're always wonderful events because they do showcase what people can do in order to improve and enhance, and to make their lives easier to access things that everyday people are allowed to access. Those sort of gaps are filled, and that's a wonderful thing about it. Whether it's a mobility device, whether it's a piece of technology that might help people navigate a certain website or, you know, something to do with their computer technology sort of thing, those sorts of things are on display and gives people a bit of an insight into what's available and what's at the cutting edge for people with disability to make their lives easier, which is a wonderful thing for everyone involved.

S2

You guys both have a very, very different people, but also very similar in how you grew up and also where you are now. As in, you've both acquired your disabilities very different ways, but in both have acquired disabilities. Before you did acquire those disability. Did you have any involvement or did you have any understanding of, say, the disability community?

S5

Well, from my perspective, I would absolutely say no. I had very limited experience with anyone with a disability. I did go to school with a few people, probably in different year levels, to what I was, and I didn't have much experience. I was, I was married into sport and all those sorts of things. My mum was a nurse, so I did get to, you know, sometimes accompany her to her nursing job, sometimes when I was younger and she'd take me around to a number of her patients. 

I remember one of them in particular was a guy who was a mad Catz supporter that was bed bound for pretty much his entire life, and his name was Wayne, and he was a wonderful guy. I was my mom's favorite patient. And he'd you go in there and she'd go, just sit with him and chat with him. And and he could apparently hear everything. He was non-verbal, but he loved to like more than anything else in the world. He'd love to switch on the wireless, as I called it, back in those days. And and listen to his beloved cats. 

But outside of that, to be honest, Sam, I didn't really have any insight into a person with a disability. I I've obviously met them in passing, but, you know, in terms of close interactions and even considering what it must be like to live with disability, I had absolutely no idea myself.

S2

So, Mike, the first year or so as a disabled person, I mean, how did you cope with it? I mean, that was did you feel any sort of loss or did you feel that you were missing out on anything? Oh, absolutely.

S5

Yeah. I think my world was absolutely turned upside down. And that's not understating it. It's it's, you know, in terms of did I feel lost? Absolutely. It was a shuddering process to go through. I was healthy one day. And then I woke up to the news that my life had changed forever. I'd acquired the better part of becoming a double amputee. I had most of my left foot gone, my right leg gone below the knee, and a whole host of other things that I was dealing with as well from a physical perspective. So where is your head at in that moment? 

Well, you're absolutely spinning. I didn't really know which way was up. I didn't know what it would be like to live with an amputation. And right through that process, I was being told by, you know, people like a prosthetist, you know, social workers and these sorts of things and, you know, occupational therapists. I was getting some guidance on what what the future looked like and what that held. And it didn't there wasn't a really wonderful picture painted. It was a pretty bleak outlook. And, and in terms of what was possible, or that was maybe a little bit of what was going on in my own head at the time. 

And then it was off to rehab, where it wasn't necessarily about life and death. It was about, well, now I'm a double amputee. What do I have to do to get up and moving again? And that was a very gradual process. Sam. I didn't just all of a sudden get on a prosthetic leg. In a way. I went there was a whole host of things that I had to consider about gaining my independence back, which took probably the best part of a year to. Just get to the point where I was able to be a little bit more independent and then look towards the future and say, well, you know, how can I? I can't change this situation, but how can I live the best life in spite of it?

S2

You guide your disability through a viral infection, am I correct?

07:18

S5

Yeah. Bacterial meningitis. Yeah, yeah, yeah. So it's a bacterial meningitis, which is something that just occurs very rare and basically send your entire system into shut down. And then, you know, they have to in order to save your life. They've got to amputate. They've got to take away the parts of your body that aren't viable anymore. So they did. And that included, as I said, my right leg, most of my left leg, couple of fingers, bit of my nose. So all those sorts of things, skin grafting all over my body and then dealing with the internal ramifications of the disease as well, as I said, very long process at least a year before I was even able to start looking towards the future and what that what that life, my life now look like.

S2

As someone who still is Touchwood, still has all these bits and pieces still attached. I did find it interesting that you actually had to make a decision to go through a further amputation. I mean, what was the thought process in there and how difficult was it? I mean, I understand, yes, you were in a lot of pain, but I mean, was it hard to actually, again, make the decision to sever another part of yourself away?

S5

Yeah, I think the answer would be absolutely yes. It was something that I was probably, if I'm being honest, wasn't being incredibly honest with myself. About what? That what my life was. I used to make excuses to why the leg, you know, it could always be worse. I used to say, remember, those words used to go through my head. You know, I didn't really want to, you know, face the prospect of having more surgery. For obvious reasons. I'd already gone through an incredible amount of trauma at the age of 18, and jumping back into a hospital bed and undergoing more surgery wasn't the most appealing option for me, so I sort of just put up with it for a long period of time until eventually push came to shove. 

It turns out I've got an infection that's now embedded in the bone, and it turns out it's not going to get better by itself. And it was also, I guess it was affecting my health more broadly. It was complicating things, you know, I was it would make me tired, more fatigued. My appetite was affected. My pain levels were through the roof, my foot would break down and those sorts of things. And I went and saw a range of surgeons and eventually found someone that, you know, really was open, honest and laid down the hammer. And they said, well, you know, well, what do you want to do with your life? And it made me really think for the first time. And I thought, I'd like to become a double amputee, so turned my right side, same as my left side. 

And I underwent that surgery and was probably, if I'm being honest, and probably the best thing I've ever done from a physical perspective, it made me able to stand up pain free and all these, all of a sudden, these opportunities to become more mobile and do more things started to emerge.

S2

And the quality of prostheses has improved a lot in the last 20 or so years. Having travelled with a few amputees myself in my time, I can vouch for that one. I mean, it's maybe not as good as having your legs back, but at least you've got a good amount of mobility now, don't you?

S5

Yeah, there certainly even since 2001 I got sick. So even since then the technology has been pretty incredible. And and it's come a hell of a long way. So yeah, in terms of walking as a double amputee, mobility has been something that has certainly improved with technology, but you've also got to put in a fair bit of time to make the prosthetic legs work well as well.

S2

Don't worry, Ben, we haven't forgotten about you. So good. So tell us about how you lost your sight.

10:48

S4

Yeah, absolutely. For me, first 16 years of my life were very much barrier free and had a quite, a quite a privileged upbringing, very sporty, very outdoorsy basketball, footy, cricket, you name it. I loved it and it was at 16 years old, sitting at the back of my classroom at school, looking at the diagram, the teacher was drawing on the board at the front of the classroom that something didn't seem quite right. And when I say something didn't seem quite right, the diagram just had this slight shimmer. Tiny little bit hazy, tiny little bit blurry. And now I just had that gut instinct, that intuition that we all get from time to time as people. 

When I noticed it more and more from my textbook to then outside the classroom, that something wasn't quite right and called, my parents ran it past them. They were like, well, I had two different experiences with my parents. My old man, my dad, he was pretty relaxed about the whole situation, going, oh, well, we'll just wait and see what happens. And mum being mum, she wasn't so relaxed and we ended up having to go and get things checked out, getting some testing done eventually, later that day ended up at the hospital. Which I'm sure some of some of your listeners would be familiar with. Especially your Victorian listeners. The Idea Hospital. 

Unbeknown to me at the time, was going to become my second home for a little while because the next morning, having been kept in overnight for monitoring and being told by the doctors that it was what they thought a very, very common thing, simply an inflammation of the optic nerve. Very easy fix. Will only take a month and a course of medical steroids, and you'll be back on your way. Everything will be back to normal. The next morning, waking up having lost 98% of my eyesight overnight. Just like that. So that was, as you can imagine, shock. Scary. Confusion. Fear. So much unknown. So much uncertainty. 

And I was pretty numb to be honest, but also didn't for a second think that this was forever. I just thought maybe it's a side effect. It'll be fixable. The doctors will sort this out. That sort of trust in the medical profession and the medical system was definitely overriding the fear of, could this be forever when the doctors found out? As you can imagine, they were in shock. I was in shock. Family was in shock. They did a lot more testing as they as they tend to do. 

And two weeks later, after a lot of different test results came back and the genetic testing came back, we eventually got brought back into hospital and delivered the news that it wasn't the inflammation of the optic nerve that they originally thought it was, that quite common, fixable issue. It was a rare genetic syndrome called Libra's hereditary optic neuropathy, or LHO. And that, again, I'm sure some of the listeners would be familiar with, but essentially 1 in 1,000,000 and got told then and there by the doctors that unfortunately at the time that Libra's was incurable and I was going to be blind for life, essentially.

S2

Does it make you feel better or worse that something is rare? I mean, you both had the same situation as far as that goes.

S4

Oh, look, I think whether it's rare, whether it's whether it's common, I don't think that makes it better or worse. I think it just one of those things. When it's out of your control, it is what it is. 

S2

I mean, you're special though.

S4

Oh, yeah. Special. Unlucky. I don't know which way which way you look at it. I suppose at the time you're thinking unlucky. As time goes on and you learn to embrace different parts of your situation and and really explore what's possible and push the boundaries and the barriers and the limits that sort of society has around people with disability. Then sometimes the opportunities that have come my way and I've been able to achieve sense. Yeah, there is an element of of luck and it is a cool part of who I am now. But there was definitely moments where you, you're wishing it was different and you're wishing you're a little bit more common than, than that rare genetic syndrome was suggested.

15:09

S2

So I mean, I'll ask the same question as I did have Mark there. I mean, having acquired a disability at the age of 16, I mean, did you have much exposure to the disabled world, as it were? Did you know anyone with a disability? Did you have any idea of what the issues were?

S4

Not not a lot, to be perfectly honest. Sam. Very similar to Mike. I went to school with two girls in different year levels who live with Down's Syndrome and was friends with them and and knew of them, but never, never close connection to someone with disability. So it was very much what I saw and heard in the media, and probably the lack of exposure to disability in the media then sort of influences your perception of disability. What people with disability are capable of, what's possible, what's not not possible, all of that sort of thing. 

And I think even though for me it was, what, 12, 13 years ago now, that I lost my sight, even the progression that society has had in that 12 or 13 years has been huge. Like losing my eyesight. Back then I thought, right, what's going to be possible? Not a lot because there wasn't a lot talked about disability, and the majority of what was talked about was always quite negative and limiting, to be completely honest.

S2

Well, I mean, once every four years for about a month, the entire country suddenly realizes that disabled people can actually play sport. So that's the one positive thing you might get every now and again. And we're about to have that over there. What was the impact of sport in your early lives, and have you had much of a chance to actually double your toe back into physical exercise?

S5

Yeah, certainly doubled my toes back into physical exercise. Sam, thanks for the pun, but mate, I realized that there's a few, there was a few things for myself personally that were off the table. I'm not going to be able to go and play rugby union and and break some heads. Not that I could because I'm probably as thin as a pencil anyway. So I even if I had legs, I wouldn't have done that. But I guess some of one of the things that I was passionate about growing up was golf. And that's something that I was able to continue to do. It's a very low impact sport. 

It just involved getting my balance back, and once I was able to get my balance back, I was able to try and hit a ball not very well to start with, but eventually be able to, you know, even to the point now where I have specific legs that I wear for golf, which can give me more mobility and twist in the sockets and those sorts of things. And, and it is a wonderful sport for people with a disability. You know, if you're in a wheelchair, you can go into a para golfer, which lets you, you know, quadriplegic, paraplegic simply tilts you up and you can swing a golf club. And for amputees in particular, I'm very passionate about that. 

I see people, people's lives improve because they get to play a sport that they can still access all areas of the course. You can get around using a mobility device, which is like a cart, pretty much, which are all accepted around golf courses around Australia. And there's a really there's a great movement within that sport. So for me, as boring as it sounds, golf, you know, it was something that I was able to continue to do. And it's helped not only with from physical perspective, but also mental health, like just getting outside, playing something that you can still play quite well. And being around good people is a really important part of it.

S2

Then have we managed to coax you out onto a sporting field since you lost your sight? 

S4

A field probably not so much your traditional field, but plenty of different sporting. What would you call them? Events have definitely, definitely piqued my interest and something that I was very passionate about as well. For me, I'll be completely honest when it comes to sports and like I said, it played a huge part in my life. Prior to losing my eyesight, I was playing basketball literally six seven days a week for a number of different teams and then throw cricket and footy in and around. That sport was very dominating in my life and a huge part of it and post losing my eyesight, it was very much right. How do I get back to that? 

And similar to Mike, it was going to be different. It was going to be back to playing footy or playing basketball in the same team. But staying involved from a social aspect, I think was also very important. So I transitioned quite quickly from playing basketball to coaching. So assistant coaching and then coaching, my coaching, my own teams, not being able to see, but the sort of longer that went on, I think I coached for a further sort of three years after losing my eyesight. The longer that went on, the people I was playing with or played with before lose my sight, they started to finish up and go their separate ways. 

So the social aspect started to drift for me as well, and it was nearly like it was a little bit too close to home and rubbing salt in the wound in a way of what used to be but one sport that I used to do as a hobby, a bit of fun over summer was water skiing and then was able to get into that competitively, so took up water ski racing. After finishing up my basketball coaching career and have ski raced a few seasons since and became the first person with low vision. First blind person to ever water skiing. The southern 80, which is one of the one of the fastest water skiing races in the Southern Hemisphere, in a Cejka on the Murray River. 

So that was something that is a little bit obscure when it comes to sort of sporting interest, but something that I was super passionate about and loved being out behind the boat and yeah, flying along behind it.

21:01

S2

Being able to see what you're doing, is that an advantage or a disadvantage when you're taking on, say, some of the more dangerous things that you've been doing?

S4

Oh, I think there's probably two sides to it. My mum would argue it's a disadvantage because it just gives her more gray hair. The fact that I'm taking on some of these things and not being able to see, but for me, I think it also takes away some of that element of fear as well. So I've gone over to Papua New Guinea a couple of times and cross the Kokoda Track. And since losing my eyesight once, in 2017 and then again in 2019, and some of the tracks over there and the bridges, you're crossing across raging rivers and things like that, there's sort of other people in the group that are having panic attacks or freaking out because they're looking over the side of a cliff and, and wondering what if? 

Yes, whereas I'm not able to do that if if someone's telling me I'm on flat ground, I'll just believe them on. Flat ground or. Oh yeah, it's a bit of a bit of a drop off on your your left hand side, a bit of a drop off could be three metres or it could be 300m. So I think there's definitely some advantages there. Absolutely. I think you're probably a little bit more in tune with your body and how it feels. And the movement when it comes to sport, rather than what's going on around you.

S2

Do you have enough functional vision to say, look down at the ground and see what's down there? No no no no no, that's that's even harder. I mean, that's so, so so I've usually got I've got enough sight to actually do that, at least at a normal pace. When I used to run. Mind you, the, the ground would look completely flat like glass. But that's by the by. That's why I've got a lot of ankle injury injuries, but at least bushwalking and things like that. I used to find that while everyone else was appreciating the scenery, I couldn't actually see the scenery. So I was looking down and not making sure I didn't step into holes or trip over things. Were you able to actually appreciate the full scale of things on Kokoda? I mean, it's often said that you know, why travel if you can't see anything? But in what did you get out of it?

S4

Oh, I got a huge amount out of it. I don't think I would have gone back for a second time if I, if I didn't, and I'm sure people that go over there and can see would argue, well, how could you possibly because apparently the scenery is, is stunning. But it's I mean, I'm sure again, a lot of the listeners would hear the analogy and we live our life in the way in which a lot of people will read a book or listen to the radio. You're able to picture what's going on in that book, and I was able to picture what was going on around me based on the sounds, the the undulation, the feeling, the stories, the descriptions from people in my group. 

And I think there was a lot of powerful things from the stories, the history. And there was probably two points, two places, two significant battle sites on the track itself now are the only two places in the world that I've been to that I reckon without knowing, without being told anything, or I felt the presence of of death and significance in that spot. And they were super powerful and that was not needing to be able to see, to feel that it was very eerie and very powerful.

S2

Then finally, I mean, so as someone who has lost their sight, do you think it's actually better to have actually been able to see normally or to have like myself just have had this eye condition their entire life? I mean, it must have been quite an adjustment. But I mean, do you treasure the actual experience of sight to start out with?

S4

I absolutely treasure it. No, no doubt about it, I think. Yeah, people that can see and have while working 2020 eyes, we definitely take it for granted. I know I did until I lost my my sight, but it's such a tricky question. So I mean, we could probably go back and forth and have this conversation for hours and I get asked the question a lot. I think for me, every single day when I wake up and open my eyes, I know exactly what I'm missing out on. 

However, having a conversation with someone standing at the top of a lookout and then describing the blue sky, the green trees. There's a mountain here. There's a cliff here, there's two eagles flying off in the distance. I can picture all that from being able to see for 16 years, whether it's accurate, whether it's perfect. Probably not, but it's probably close enough in my head. Someone who's born without vision or again, having not been born, I would assume that that's a little bit more difficult to do. However, you don't know what you're missing out on because that's been your normal from from day one, so I don't know what's better or worse.

I'll never say one or the other because I haven't been in both situations, obviously, but I think all I can give is my insight that it's easier to relate. But I also know what I'm missing.

25:57

S2

So as migrants into the disability community, I've asked you how how you thought of us before you would arrived in this place. What do you think of things now in the situation of the well, the way that we communicate with each other and also the plight of people with a disability?

S5

Well, yeah, from my perspective, I feel really privileged to be able to have met some of the people, and there's absolutely no doubt in my mind I would never have met or even associated with them. Not not because not in a bad way, but I probably life situation, circumstance led me to be, you know, around other amputees, around other people with disability and, and people that you get to meet that acquired inspiring. I hate the word inspiring, but they are like I think about some of the things that Ben's done and how he's managed to get through some of his challenges. 

And I can really relate to the way that he thinks about life and the way that he has the ability to sort of, I guess, put something in perspective as large as that is and still continue to move forward and live a really happy, successful life. He's a dad, he's... And those sorts of things. Nothing sort of stops him. And to me, that's a really it's a real privilege to be able to meet people like that. And as I said, if I never got sick on that football trip, I probably wouldn't have had that opportunity. And I'd be I don't know what I'd be doing, but I'd be involved in probably still, you know, regular sport, those sorts of things. So I think in many ways the disability community is quite unique. But also, you know, for the most part really, really supportive. And and you've got some pretty amazing people amongst it then.

S4

Oh, I think for me it's just a part of who some people are no different to the fact that some people have blue eyes and some people have brown eyes. I think from a distance having, like Mike said, not being as closely connected to people with disability. Growing up, you have this perception that people with disability are so different. They they've got so many challenges. Their life must be so hard. But having now lived it for so long lived and breathe it every single day. 

Yes, there's definitely challenges. There's barriers in every single person's situation, and circumstance is different and there's variations of that. But we're still normal people. It's a part of who we are. It doesn't have to dictate or define what we can do, what's possible, what's not possible. If we're sort of focusing on embracing our disability and working with one another to explore those possibilities. I think the disability community on a whole is a lot more normal than people probably think think we are, to be honest.

S2

No worries. So if we want to go and see you guys at the expo, when and where?

S4

17th and 18th of November. And that is at, Mike?

S5

At the Melbourne Exhibition Centre, isn't it? Yep, yep. Absolutely. It's going to be fantastic. So you come along and Ben and I really approachable. So we'd love to speak to each and every one of you. Can't say g'day have a chat. We'll get to around to all the exhibitors as well. And there's a chance to have a bit of a chat on stage here, a little bit more about those stories as well. So it'll be. Yeah, can't wait. It's going to be a good event.

S2

Thanks for having a bit of a chat with me guys. We'll look forward to speaking to you in the future. 

S4

Cheers, appreciate it. Thanks too.

S2

Right. That's it for this week. A big thank you to Ben and Mike. 

S3

And of course, thanks to you for listening. On next week's show, we look at the pros and cons of mobility aids for the blind, from the dog guide to the good old fashioned white cane.

S2

Between now and then, please do get in touch with the show. Whether you have experience of any of the issues covered in this episode of Studio One, or if you think there is something we should be talking.

S3

About, you never know. Your story and insight may help somebody else who's dealing with something similar.

S2

You can email us Studio one at Vision Australia. Org, that's studio one at Vision Australia. Org or even take a look at our Facebook page facebook.com slash VA Radio Networks. This show will be podcast well around about now really. So feel free and have a look and maybe make a few comments. That's it for now. Bye. See you.

30:16

S1

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