Fullständig transkription av Talking Vision 640 Week Beginning 29th of August 2022

to meet other people because they might still be the perception out there that having it online, of course, there's nothing like being in person, but that's not always possible. So one of the beauties of having it online is that you can pretty much attend from anywhere, but if you've never been to an online event before, it's not just sitting and watching this and participation involved with this particular time. Absolutely, absolutely stellar. And when you talk, I was thinking that, you know, you can attend in the comfort of your chosen environment, you know, whether it be your home or your backyard or in another chosen place that you're comfortable with. There's no travel and you don't have to worry about navigating from a conference room to the lunch room and then back to the conference room deal. You're not going to make sure I'll leave enough time to be able to get myself from A to B. So I think there's some benefits that have come out of. COVID pandemic, where we can actually sort of look to some of those places and say, well, you know, we can still actually connect with people, we can still engage, we can still learn and participate. And again, in the comfort of your own chosen environment, who should come along? Everyone. Everyone should come along. So anyone who's interested to know more about Blind Citizens Australia and the work and support and assistance that we provide, we really encourage everyone to come along. We feel that there will be something there for everyone, particularly when our members have chosen, you know, we've got the five top position topics that will be on the day. So we really want to encourage everyone to to come and disconnect and learn something new or different. And I have been speaking to Deb Tashi, who is the General Manager of Projects and engagement at Blind Citizens Australia, BCI. Now if you would like more information or to register for BCA Connect, you can contact them toll free on one 800 0360. That's one 800 033660. Or you can email BCI at BCI dot org dot AEW. That's BCI at BCI dot org, dot aew or head over to their website. BCI dot org. That's BCI dot org. And now he is Stephen Jolley in conversation with Ben as part of our. Let's talk about vision loss series produced by Vision Australia. 00:10:05 S3: The onset of vision loss no longer being able to see properly, if at all, can be frightening. Devastating and certainly is life changing. But in time, not all that many can tell of the turn around. One such person is Ben Page. Ben can tell us his story of the lived experience of this life transition. Ben, you've lived with vision loss for most of your life. Tell us that story. 00:10:35 S2: I guess it started with my older brother. He, I think, started having some trouble at school. And so when they did some investigation to try and work out what was going on, they looked at his eyes and found it. Well, he couldn't see what was going on. And at the time when they examined him, they also looked at me

and they looked at my eyes and went, No, it's all good. Don't worry about it. His eyes look fine. Then when I turned eight, a couple of years later, the exact same thing happened to my eyes where it was quite a rapid decline in vision. They couldn't put a name to the condition other than sort of an umbrella term of a cone rod dystrophy. So a bit like retinitis pigmentosa or Stargate disease or macular dystrophy. The areas in which I lost vision were sort of all over the sort of the visual field. So I lost a lot of vision from the centre, which really impacted on my ability to write and read and also to do anything like ball sports. But then I also lost vision from sort of the mid periphery. 00:11:42 S3: So tell us about school already. From about eight onwards you were a kid who had to be treated a little bit differently, get a little bit of special help. How did you feel about it and what difference did it make? 00:11:55 S2: All through school, I would have an integration aide who would sit with me and, you know, help me fill out maths questions, sheets or scribe for me. I think I found that the most easy way to to work would be to dictate what I was going to want written down and have them write that down. It wasn't always great because when you're in a 14 and in a math class where you do not want to pay attention and you've got an adult sitting next to you, you're away from your friends, you've got someone keeping you on task while it's great because it keeps you working and you can't slack off. Yeah, I think when you're 14, that's kind of all you want to do. 00:12:37 S3: So you went through secondary school and you must have gone alright because you went on to uni. Tell us about that. 00:12:43 S2: I always had a huge passion for science. I think biology and chemistry were always my favourite subjects at school. So I went on to the University of Melbourne to do a Bachelor of Science. I think it was kind of a scary transition because I was going from the high school scenario where I had an integration aide sitting with me constantly to having teachers keeping track of what I'm doing and if I have anything over due to the university environment, which is a lot more. Self-Directed and you're expected to be a lot more independent. 00:13:17 S3: So I guess you had to be able to speak up for yourself more. What we often refer to as self-advocacy skills would need to have been developed. 00:13:27 S2: Yeah, absolutely. I think that was sort of key to me. Doing well at uni was being able to talk with the teaching staff and the subject heads to death. I guess first of all introduce myself and they were always so supportive and so eager to make things work for me. 00:13:48 S3: How did you feel you were fitting in with the university life? 00:13:53 S2: I think the biggest social thing I had was through the university. Part of their support they could offer would be academic support workers. These were people who were trained up by the Unis Disability Department to do things like take notes in lectures and sit in with you on tutorials in case you needed any assistance. Rather than them being integration aides, these were always students who were working for the university. They were there to support me, but in a weird kind of way, they were also like a university assigned friend. One of the things the university offered was I could have assisted study time. So taking these academic support workers and going to a library and then working with me to do whatever I needed to get done. If it was ratings, they would read to me. But because, you know, I got along so well with them, it was kind of just like hanging out with a friend. 00:14:49 S3: So what do you do these days? You still studying? 00:14:52 S2: Yep. So I finished my undergraduate degree in genetics. I am now doing a masters in genetic counseling through that course. I sort of realised that while I love genetics and the concepts of it, practically doing all the experiments and things, that wasn't really for me I guess, because partly I didn't really enjoy them. But then also with my vision it was very difficult to perform those tasks. 00:15:22 S3: We all have damn time as well as good time up time, those down days that you have. How do you deal with that? 00:15:31 S2: Yeah, it can be hard sometimes. You while I would say in some ways I've come to terms a lot with having low vision, it's still days when I really feel the impact of it a lot more, particularly when thinking about studying or my career prospects. You know, while I'm good at it and I have all the skills. There are days when I think, All right, well then why would someone choose me for a position when they're in my peers who have the exact same skills, but they can go and file a document where it needs to go. So I think when I start to feel down, it's really that sort of disillusionment with the future, you know, that there would be someone else who could do what I could do, but they can just see, which is why they'd be preferable. And I think those thoughts are really hard because I think it's kind of spirals out into lots of other aspects of your life. If you start to think about, Oh, well, why would someone hire me then? Oh, well, why would I bother going to the gym? Because I'm going to have to walk there and it's going to take half an hour. 00:16:32 S3: So how do you deal with that? 00:16:33 S2: I think talking to people about that, to let people know that this is how you're feeling, whether it's a parent or, you know, someone at the school or someone at uni, like a staff member, because those thoughts are so easy to spiral. It was really important for me to when I start feeling that, I let people know and I can start to talk through those kinds of things. For example, through uni doing my masters of genetic counselling, I would often, especially last year, was feeling really down and really disillusioned just thinking, All right, I can do genetic

counseling, I'd be a great genetic counselor, but everything else around the job is something that's going to be so hard. Why would I get those positions over anyone else? And I think having spoken to people and identifying, that's how I'm feeling. Then I started to work on building myself back up and focusing on things like, Yes, I have low vision, but in a way that lived experience gives me an advantage over people that they can't have. So in a counselling setting I'm automatically going to be perhaps more empathetic or be able to know more about what supports are available for someone who might be going through something. Because I've been there after school. 00:17:58 S3: What sort of support from blindness organisations did you get through your tertiary studies up until now? 00:18:05 S2: Yes, so definitely access to mobility training through guide dogs. While I would be able to navigate to get to places, I think when I was actually there, I knew. Navigation skills weren't up to scratch to be able to really get me to where I needed to go. I had to go to a conference in the city and I found the building all right. But it took me about 20 minutes to find the door. 00:18:27 S3: So how did training from Guide Dogs help you with that? What did they show you? 00:18:31 S2: I think that's when I upgraded to a long cane, as opposed to using an ID cane just through them observing me and sort of talking with me. I sort of realized that I was using the cane more as a long cane, which it's not really designed for and doesn't really have the sturdiness for. So immediately transition to a long cane and even just strategies like not panicking or just taking the time to try and be a bit more observant, just sort of using your own intuition to sort of work out. All right. Where would Adore Be? It would obviously be near somewhere where it's easy to access. So rather than just trying to find a hole to walk through, starting to look for things like tactile tiles or looking for stairs or a ramp or even starting to do things like take my phone out to use my phone camera to extend my range of vision. 00:19:27 S3: What difference has the NDIS made for you? What have you been able to benefit from it? 00:19:32 S2: Having a transport allowance is fantastic. Once I got that, it was an encouragement to start using a lot more things like taxis to get around. Before I would rely on walking and public transport. Being able to purchase some adaptive technology like the program Zoom text that I'm using right now that was all paid for through the NDIS and the kind that I used to get around was paid for by the NDIS. And I guess previously they would tend to be expenses that I would have to pay out of pocket. 00:20:04 S3: Been thinking about someone who has recently gone through that life changing experience of vision loss. What advice would you give to them? 00:20:13 S2: It is usually always support available or a pathway around any difficulties that you might be facing

going through uni and things. You don't know what support is out there until you look and I think people don't know how to support you in the best way until you've had a conversation with them about what the things are that you might need. 00:20:42 S1: And big thank you to Stephen Jolly in conversation with Ben, who is a science whiz and uni student, and he's also a part of Vision Australia's online and audio campaign. Let's talk about vision loss. You can find out more information about let's talk about vision loss and on our website Vision Australia dot org, that's Vision Australia dot org. And each story is accompanied by a. By an interview similar to what you just heard. Then you can make a poll Amy, Britney, Dana, Brenda, Cheryl, and Tony. And if you have a loved one who is blind or has low vision and you'd like to know more about the support available, let's talk about vision. Loss is an excellent audio and text resource for you and you can order your free copy online or call Vision Australia and have one delivered to you. And a big congratulations to the team behind. Let's talk about a vision loss because they have been nominated for a Community Broadcasting Association of Australia Award at the CB II for Best Online Content. So fingers crossed we find out in November if they are the worthy winners. So congratulations to the team behind this fantastic campaign. And here's Francis Calland with the reader recommended. And she's also going to be talking about a Vision Australia Library event coming up on Friday, the night of September. And as Estella has mentioned, keep in mind the 9th of September here at Vision Australia Library at 630 there will be drinks and nibbles available and it does sound like a lot of fun. I have booked today to attend and I'm looking forward to it because these days with everything that's happening, sometimes you don't feel like you get out enough, but that'll be something to look forward to. You can register online for. It's called In Conversation with Solari Gentle, the woman in the library. You just need to fill in your first name, last name, email if you've got one phone, whether or not you need some hearing or augmentation system or hearing loop and also list any dietary requirements. So we know that anybody that comes is catered for. You can go to the events page on the Vision Australia website, the events page and find in conversation with Solari Gentle or ring the library if you need a bit of help navigating this or booking that way. We did talk about the book, The Woman in the Library recently, but let's play a sample now of this literary thriller for strangers, a quiet library, the perfect place for murder. And then there is a scream, ragged and terrified, a bit of silence, even after it stops, until we all seem to realise that the reading room rules no longer apply. Hannah, bestselling Australian crime author, is crafting a new novel that begins in the Boston Public Library. Four Strangers, Winnifred, Cain, Marigold and Wish are sitting at the same table when a bloodcurdling scream breaks the silence. A woman has been murdered. They are all suspects. And as it turns out, each character has their own secrets and motivations, and one of them is a murderer. While crafting this new thriller, Hannah shares each chapter with her biggest fan and aspirational novelist Leo. But Leo seems to know a lot more about violence, motive and how exactly to kill someone. Laodicea is a symbol of the woman in the library. It's narrated by Nick Ravenswood. The account of the body in the public library is plastered across the front page. We pore over it shoulder to shoulder, sipping coffee while we read. We learned that the body was found in Seven Gallery, which was being prepared for an event the next day that the woman's name was Caroline Palfrey. The name means little to an Australian like me, of course. But Cain mutters Brahman as in a cow. I ask, a little confused, as in the social class. He explains that the pulp Fraser from a long line of Brahmins, members of Boston's traditional upper echelons. They're rich. It's more than wealth. He says the Brahmans were integral to the East Coast establishment. They're a culture unto themselves. Surely Australians have their equivalent old family names that are prestigious because they declare themselves to be so. I smile, remembering Margaret Winslow from the board of directors of the Sinclair Fellowship who was so proud of being a sixth generation Australian. In the country of the oldest living civilization in the world, some 60,000 years of indigenous history, six generations had seen the pallid boast. And he actually made it. Waxing lyrical about the property and in Wagga Wagga that her great, great, great great grandfather had claimed in the mid-19th century, the country had cleared and cultivated. Country that belonged to the watery. Probably, I reply, but I don't move in those circles. I believe that's the point of those circles. Does it say what was going to take place in the Chauvin Gallery? I ask as I scour the article myself for the answer. Not really. He points to the relevant sentence. She was found by a cleaner, so the gallery would probably have been otherwise empty. I wonder if Marigold or Whitney her. Speak of devils, Kane says as they walk into the news fete, he waves. Marigold sees him, grabs weight and drags him towards us. Her eyes are bright and her cheeks flushed. She glances at the paper. So you've seen it? Yes. Did you not? No, but we did. That's the woman in the library by Celery. Gentle. Have a listen and come along to the evening where we talk about the book. We listen to salary. And Robert discusses salary is spelled s u l i r i isu l a r i gentle is gnt i double l in t i double l. On Stellar Glory, and that's the program for this week. Talking Vision is a production of Vision Australia Radio. Thanks to all involved with putting the program together. And remember, we love your feedback and comments and if you've heard anything on today's program and you'd like more information, you can contact us at Talking Vision at Vision Australia dot org. And Sam will be back next week. So it's bye for me. You can contact Vision Australia by phoning us anytime during business hours on one 300 8474w6 that's one 300 847466 or by visiting vision Australia dot org that's vision Australia total.