Trascrizione completa di Talking Vision 842 Week Beginning 27th July 2026 (Highlights Program)

bit of a problem because when we're trying to do things or advocate, especially through government or applying for grants, people want to know our data and we just don't have reliable data. 00:04:00 S3: Tell us a bit about the impacts that albinism can have on the lives of people with the condition and how are they, as you said, get by independently. And people don't really see the way that they could be struggling inside. But, you know, they live with the condition, they develop coping strategies, all that sort of thing. But how can it impact people? 00:04:26 S4: Well, I guess if I start with what albinism is, there's a lack of melanin in the body, particularly in the eyes. And for some people it's only the eyes. And that's referred to as ocular albinism. But oculocutaneous albinism is a lack of melanin in the body in general. So eyes, hair, skin. We also have foveal hypoplasia, optic nerve misrouting transillumination of the iris. And not everyone, but most of them also have nystagmus. And because it's the basic things of the body which are formed in utero, it can't be cured. But the good news is it's not degenerative. So what you have when you start is pretty well what you have, except for a delayed development for children. So a lot of children, their eyesight hasn't fully developed until they're 5 or 6. So often very young children are legally blind, but they won't be by the time their eyesight has fully developed. So once they go to school, that's about the level that they'll have. But people with albinism are very good at adapting, as are most people with low vision. So certainly some of our older generation had a lot of trouble as kids with education, with jobs, with everything else. But now, because we've got technology, all sorts of things that aid people and also a societal change in attitudes towards people with disabilities. So I think today people have far less issues than what they had in the past. 00:05:57 S3: And the society has improved in some ways, but there are still some misconceptions and some portrayals of people with albinism that are less than complimentary. How do we combat these sort of myths and these stereotypes, and really break through that and gain greater awareness for albinism within the general public? 00:06:20 S4: I think the biggest one, of course, is they have red eyes, and it's a bit like the old fashioned cameras. It doesn't matter who it was if they used a flash, the flash reflected light back so they appeared red. That's exactly what happens in some lighting situations with people with albinism, because there's no melanin in the retina to absorb that light, it flashes back a little bit. But of course, if you know someone who does have albinism, you can see that they've got anything from bright blue to very pale, almost violet eyes, but definitely not red. And people will sometimes say, oh, you can't have albinism because you don't have red eyes. And it's more about misinformation and misunderstanding. Um, the other thing is there was an old fashioned idea that because they were so pale, they must be ghostly. So there's something about that. But I don't think you don't hear that commented on. Now, these days I think it's mainly red eyes are the things. And for a person with full vision, I think if you find that somebody has low vision because you would think, well, gee, if I couldn't see, I wouldn't be able to do that. They assume that those people can't do it either. People with albinism, and they don't realize that they use all their other senses, and they've developed coping strategies over the years. So yes, they can do most things. 00:07:45 S3: Yes, certainly. 00:07:46 S4: Pretty hard to drive a car if you're legally blind. 00:07:49 S3: Yes. 00:07:49 S4: An airplane. 00:07:50 S3: Yeah. 00:07:51 S4: But our members are doctors, physios, lawyers, teachers, um, engineers, all sorts of jobs that you might think they couldn't do. So our engineer who's um lives in Melbourne, He's he's an engineer and he works with a bioptic on his glasses. Quite a big one, but it means he can read all those small plans. Most of them have large screens or multiple screens, so it makes it very easy for whatever job you've got. And of course, at school these days, all kids are using iPads and computers, so our kids fit in perfectly. They're not different anymore. They don't have to sit in the very front all the time because they just take a picture with their with their iPad or even their phone. So yeah, they fit in. 00:08:38 S3: And there's a, a funny story about another person with albinism, ocular albinism only. And, um, as you said that, you know, people don't really think about it because she doesn't have super fair skin and white hair that, you know, people forget. 00:08:55 S4: Yeah, she's a nurse and she visits patients on the ward and she uses an iPad for that just like everyone else does. But of course she enlarges stuff and when she was in the operating theatre, she has several large screens instead of small ones, and she handles instruments in the operating theatre. And other people love the big screens, so they're forever turning it around so they can look at them. And she says, hey, hang on a minute, I really need that. And one instance, she even had the surgeon sort of say, oh, look, we've got to go to another thing. I'll leave you to finish up. And she said, no, no, no, no, I can't do stitches. Oh I forgot you can't see. 00:09:34 S3: Oh goodness. Yeah. 00:09:37 S4: Yeah. And that's typical I think of what happens. But at the same way I have a grandson who races go karts and I don't think people realize that he's got low vision because he wrote a piece for Statewide Vision Resource Center. And he said, I know at turn four exactly when I have to break because there's a crack in the concrete. And I know that, and I know exactly where other cars are by the sound they're making and how close they are and whether they're breaking or not. So he uses his

hearing a fair bit and his memory. He knows every track, every corner, every turn and how long the straights are. So other things just compensate. 00:10:17 S3: Certainly. And Sandra, I understand there's a Melbourne event coming up. 00:10:24 S4: Yes, we're celebrating Albinism Day. Not on the 13th because too many kids have got sport. But on the 14th of June we're meeting at the Croxton Hotel in Thornbury for lunch at 12. Just just a casual event. You pay for your own meal. But then we also have our biannual conference in Adelaide on the fifth and 6th of September, with a bit of a social gathering on the Friday night before. So if anyone is interested in coming to that or to finding out more about it, they can find out about it on our website, which is albinism, australia.org. 00:10:59 S3: Well, Sandra, thank you so much for your time today. I've been speaking to Sandra George from Albinism Fellowship of Australia, all about Albinism Awareness Day and raising more awareness of albinism in Australia and around the world. Sandra, thank you so much for your time today. It was great to catch up with you and have a chat. 00:11:23 S4: Thank you very much. 00:11:29 S2: On Vision Australia Radio. You are listening to Talking Vision. Today we are highlighting some of the great interviews Sam conducted while host of Talking Vision. Now over to Sam for his interview with blind mum Dina Morgan. 00:11:41 S3: I'm here today with mum of two Dina. Dina, thank you so much for your time today and happy Mother's Day. 00:11:49 S5: Thank you, Sam, for having me. Pleasure. 00:11:52 S3: Tell us about your vision and life as a blind mum. 00:11:56 S5: Sure. Well, I have congenital glaucoma, so I was born with this condition. I did have sight through my childhood and then in my early 20s, my vision really progressively got worse. And now in my mid 30s, I'm totally blind. So I've been using a cane for the last 15 years. And, um, yeah, so I've only known being a mum as being blind and I've had to negotiate that with different challenges and its ups and its downs. But yeah, I wouldn't have it any other way. 00:12:37 S3: And um, you're in quite a unique situation, Dina. As I understand it, you and your partner are both blind. So what's that been like for you both to be, you know, navigating that together? 00:12:50 S5: Yeah. So my husband, Thomas is also blind. I always knew I wanted to be a mum, so that was never a question of deciding whether I would have children or not due to my blindness. I knew of other parents who were blind, so I knew it was possible. And I definitely knew it wouldn't be easy. And Thomas was the same. But we really jumped straight into it just after we were married. And yeah, I've utilized a lot of resources, like I've been part of the Vision Australia Tele Link parent group, which was very beneficial when my daughter was six months. I had joined that group, found it really helpful. I also got an OT assessment done before my first daughter was born, just to talk about the house and practical challenges and yeah, so but every phase of, you know, my children growing, it's a new phase and it exhibits with new challenges. But yeah, Thomas and I have got good open communication and we're very good at Self-advocating. Yeah. 00:14:03 S3: When you're saying, you know, you were absolutely both jumping at the opportunity to become parents and there was, you know, never a question about that. Were there any worries or any concerns at all at any point about a couple of little things that were playing on your mind? 00:14:21 S5: I think for me, it was on a practical level, like, how would I change her nappy if I can't see, how am I going to change it? Or how am I going to know when she's sick? How am I going to go out and get her from A to B? I'm very pragmatic, so I think about things in terms of processes and how am I actually going to do this task? What steps do I take? So for example, with the changing a nappy, it turned out not to be a big deal at all. Like with that, for example, I do it like I'm painting something. So I start from the left and then go to the right. And I know that she's all clean and a lot of it's very sensory. So, you know, touching, getting your hands dirty when you don't necessarily want to, but you kind of work things out as you go. And that's what I found, just taking each little task at a time and a thing that I found really overwhelming was getting so much advice from different midwives, friends, other family members, and sometimes getting too much advice can be very overwhelming. So, you know, I took bits and pieces and now with my second, I was a lot more confident, for example, when feeding her with my second one, if she doesn't need all her food, that's okay. I let her take control of her feeding a lot of the time, so I'm not having to feed her where I can't see again. A lot of it's touching and just navigating each situation as it arises. 00:15:57 S3: You talked there about getting all that advice and sometimes a bit too much advice. How's that been like to navigate a few perspectives from other people who perhaps don't understand what it's like to be a blind mum, or they perhaps have a few preconceptions about people from the blind and low vision community and what they can and can't do. 00:16:21 S5: Yeah, a lot of it was, you know, like, for example, I'll get a lot of people saying, wow, how do you do it? How do you manage? And I mean, you do manage because when it's your own situation, you make it work for you. And sometimes I found that getting advice, it wasn't the right advice for me because the person giving me the advice wasn't familiar with the nuances of being blind, you know? Or they'd say things like, oh, well, your mum can help you. And that to me really wasn't helpful because I don't rely on, for example, my mum. I don't rely on her for those informal supports. I mean, she does what she can, but she doesn't do any more than any other grandmother would. And

I just had to filter out a lot of advice and take what worked for me. And that's what I still do now. Um, I have to say, the NDIS for our family has been really great and beneficial. We've made it work for our family unit. So even though I don't have informal support, I do have a lot of support that we've gained through the NDIS, which we're constantly working through and it's evolving our support circle. But yeah, that's been really helpful for our family as well. 00:17:40 S3: And what have been some of the major day to day challenges, perhaps this varies between the two daughters that you have now. Have there been any differences there and sort of different things that you've had to tackle? 00:17:55 S5: Yeah, I guess like any other family, you've got to balance your routines. So, you know, Indy gets to school on time, Heidi gets to crash, and Tom and I, I'm going back to work shortly. And and he works as well. So for example, Thomas does a combination of working from home and working in the office. So the days that he works from home, he'll be more hands on in the morning routine. I have support workers that come in and assist in the morning with the morning routine, getting the girls off to school and off to crash, and then I might do grocery shopping with that support worker, get some errands done. So it's a full schedule and it's, it takes a lot of organization and having that good open communication with Thomas as well. And like I said, we make it work for us. 00:18:49 S3: What have been some of the most enjoyable parts? Because it is quite chaotic and you know, it's all go, go, go for a lot of the time. But have you had a moment to just sit back and think about some really enjoyable times? 00:19:04 S5: Yeah. Well, my eldest daughter now, she's old enough where and she has been very aware of both Thomas and I not being able to see. She's been aware really since she was very little. So her and I, we've always gone out like now and then just her and I will go out to a cafe, grab some lunch, and then we might go to the park. She loves op shopping and just having that time with her, it's so special. She's really sassy and she doesn't take on more responsibility because I can't see. And if she does, it's because she wants to. For example, she says that she's a great guide. She she's my guide and she likes that title. She always says I'm Mum's guide and she loves guiding me around and moving the cane and, um, so yeah, it's a nice age. Even with my youngest daughter, we love bath time. Like that's our little time. She, you know, he's learning to stand in the bath and turn and do a lot of sillies in the bath. But it's a really nice time and a great bond for us to. 00:20:15 S3: What was it like having that conversation if you did have that conversation to begin with, with Indy, was there something where you sort of sat down one day and said, oh, you know, Indy mom's blind or, you know, Mom and Dad, we're both we can't see. But, you know, this is what that means. And, you know, did that sort of explicitly happen or was that implied or they just picked up on that? 00:20:41 S5: Yeah. Look, Sam, there wasn't actually one moment where we sat down and explained it as such. It really happened quite organically. I mean, it was just such a slow progression that her understanding evolved. Like even when she was a little baby. She would point to things, for example, and we couldn't see what she was pointing at. And then she sort of learned to bring things to us. So yeah, and just put things in our hands. And I guess she just learned it was just her normal that both her parents couldn't see. And I guess she just took the cues that we're not going to respond to you if you're pointing. So yeah, she, she kind of just weaved her way into knowing that Mom and Dad can't see. 00:21:33 S3: Have there been any other kind of life hacks or things that have been picked up on that either the kids have put together or perhaps life hacks you and Thomas have come up with over the time to make life just that little bit easier for yourselves. 00:21:50 S5: I guess one thing is being very organized with all our clothing. I mean, we have so much clothing. And Indy now is really proud of the fact that she looks after her room. She puts her clothes away in the correct spot, she makes her bed, and I think she's learned that from me because being a mum who's blind, there's stuff everywhere. Toys are everywhere. So it's important that things have their place, otherwise it can get quite out of hand and I don't want to spend all my time looking for things. So putting things where they belong is really essential. And I think even Heidi, who's only 16 months, I think they've both picked up on that and have will take it on into their own lives. 00:22:40 S3: So what sort of advice would you have for new mums who are blind or have low vision, and they might have a few worries or thinking about how they're going to manage? What would you say to them? 00:22:53 S5: I think it's important to find a network of people around you, whether it's informal supports or formal supports, because it can be quite isolating, especially if you know you don't have that freedom to take out your car and go for a drive, or even just go for a walk. Like it's difficult for me to just take out my daughter, my 16 month old, for a walk by myself. But having someone I can call and say, hey, can we go for a walk or grab a coffee? Try and align yourself with good people that will be there for you. Get support from support groups such as Vision Australia's Tally Link parent groups. I found they were very helpful at the beginning, and that's all done within the comfort of your own home. Speak to the maternal health nurse and if you need a referral to a counsellor or a psychologist. Definitely take it up. It's not a bad thing to ask for help. And there are so many services out there that can help. It's just knowing where to find them. 00:24:01 S3: I've been

speaking today with Dena, mum of two daughters, who caught up with me today to chat all about her life as a mum. 00:24:13 S2: Lastly, here is Frances with the reader. Recommended. 00:24:16 S4: This book is one we've had in the library collection for a little while. It's father Bob, the Larrikin Priest by Sue Williams. This is the life story of father Bob Maguire, a rare behind the scenes look at the much loved people's priest. The enigmatic champion of the down and out was shaped by a lonely childhood in poor circumstances, an early priesthood that collided with the upheaval of Vatican two and working with the army during the Vietnam War. This is a lively portrait of the man behind the resilient social activist and popular media performer who refuses to be defeated by enforced retirement from the parish over which he presided for nearly 40 years. Let's hear a sample of father Bob the larrikin Priest by Sue Williams. It's narrated by Richard Bligh. 00:25:03 S6: The most chilling sound of young Bobby McGuire's childhood was his father's heavy footfall on the front doorstep, followed by the scratch of a fumbled key in the lock as he stumbled home from yet another drunken evening at the pub. The family would hold their breath in fear, waiting to see just what would walk in. Sometimes it would be his dad in a genial mood, animated with ale and conversation, telling jokes, singing songs, reciting passages from Shakespeare and recounting funny anecdotes from his years spent at sea. More often, it would be a dark, smouldering stranger who didn't want to know his kids and could, with his temper on a hair trigger, explode into violence at any moment. It was their mum who was his usual target, and she regularly endured savage beatings. The four children would cower in terror as their father lashed out in an alcoholic rage, frequently leaving his wife cut, bloodied and bruised. Even today, three quarters of a century later, Bobby's older brother Jim, can still picture the handprints of blood left smeared on the walls as she struggled to get away from him and out of the sight of the children. At other times, their eldest sibling, Eileen, found herself on the wrong side of his fists. But Bobby, the baby of the family, has few memories of any of that. I think I probably just blocked it out, he says now. But I do remember the only time my father communicated with me. He'd been away and when he came home, he beat me with his belt. He was always a bad drunk, and that's the only time I can ever remember him taking any notice of me. 00:26:42 S4: And that was a sample of father Bob by Sue Williams. If you would like to borrow that book. If you would like to join the library and find out about other wonderful books they have, you can always call 1300 654 656. That's 1300 654 656. Or you can email the library at library@vision.org. That's library@vision.org. 00:27:12 S2: Thank you for listening to Talking Vision. We'll be back next week with more highlights of the wonderful interview Sam completed during his time as host of Talking Vision. 00:27:24 S1: You can contact Vision Australia by phoning us anytime during business hours on 130847466, that's 130847466, or by visiting vision australia.org. That's Vision australia.org.