Beth Cody catches up for an interview with Reggie Sorensen, who speaks about what it means to her to take part in the latest season of Big Brother Australia as someone who lives with retinitis pigmentosa. Beth is a huge fan of Big Brother as well as somebody who shares lived experience with RP, and you can hear a fair portion of their conversation coming up very shortly.
Then later on in the program Sam has the opportunity to speak with Matthew Layton and Sam Rickard from Studio 1 as we kick off Radiothon at Vision Australia Radio for the month of June, and Sam also catches up with Helen Velissaris to chat all about the latest issue of For Your Information, or FYI for short.
We also pay tribute to RPH and Blind Citizens Australia pioneer Neville Kerr, who recently passed away at the age of 82.
From Vision Australia. This is talking vision. And now here's your host, Sam Collins.
Hello, everyone. It's great to be here with you. And for the next half hour, we talk matters of blindness and low vision.
A lot of people. A lot. Well, a lot like you are bringing so much awareness to blindness. And I. I'm just so glad that I got onto the show now. And I'm glad that I'm showing people that you can just get out there and have a go. Yeah, it's really good.
Welcome to the program. That voice you just heard there was Reggie Sorensen speaking about what it means to her to take part in the latest season of Big Brother Australia. As someone who lives with retinitis pigmentosa, Beth Cody recently caught up for an interview with Reggie. And Beth is a huge fan of Big Brother, as well as somebody who shares lift experience with R.P.. So we were very excited to be able to bring the two of them together. And you can hear a fair portion of their conversation coming up very shortly. Then later on the program, I had the opportunity to speak with Matthew Leighton and Sam Rickard from Studio one as we kick off radiothon at Vision Australia Radio for the month of June and I catch up with Helen Bellisario to chat all about the latest issue of fire information, otherwise known as FII for short. I hope you enjoy this week's episode of Talking Vision. And now here's Beth Cody with Reggie Sorensen.
Today, I'm thrilled to be talking with Reggie Sorenson, fellow AP Warrior, Blind Babe and winner of the 2003 Big Brother series. She is one of the returning housemates this year, dubbed royalty for the 21st anniversary season that is currently airing across Australia. Welcome, Reggie. Thank you so much for agreeing to have a chat with me today. I am super keen to hear all about your journey with Big Brother and your journey with retinitis pigmentosa. So I guess I'll start off with the first thing I remember when I was diagnosed was night blindness and having trouble seeing at nighttime. I would really love to know what led up to your diagnosis.
Oh well. Mum was the same thing. It was the night blindness. So they were hammering. How I actually found out that I had retinitis pigmentosa was I was 29 years old when I got diagnosed and I was living in Melbourne and I was training to become a flight attendant at Virgin Airlines and we had to learn how to work with people with disabilities in the training. And a lady came in who was vision impaired and she said she started talking about how she was going blind. And the first thing she said was not she couldn't see in the dark. And I was and I was listening to her and I'm like, oh my gosh, I can't see in the dark either. But everyone used to say to me. Now I can see in the dark. So I just thought that was normal. Anyway, I had a conversation with a lady and she said to me, Go and get your eyes checked. So I went to an optometrist and I said, Now you need to go to a specialist, go and see an ophthalmologist, and they'll be able to go from there. So that's what I saw, an ophthalmologist, and they diagnosed me with retinitis pigmentosa. And at that time, I didn't it didn't sink in. I didn't really think much of it at all. And it wasn't until a few years down the track I moved to here on the Gold Coast, met my second husband, you know, and got married, had kids office, sorry, I had my first. But when May was a baby crawling on the floor, I was tripping over her and kicking her on the floor and about, oh, my goodness. And Diane said, Go and get your eyes looked at again. So I went back to the doctor back here on the Gold Coast, and he said, Dad, do you drive? And I suggest and he said, You need to stop right away. And that's that's when it really like, wow, I'm more God like. And he said, you can't drive anymore. And my eyes were so bad. So that's how my diagnosis came, came about.
It's interesting how you don't really notice it until there's those sort of sort of innocent accidents can happen and they just keep happening.
Yeah, yeah, yeah. Like, you know, when I kept on also banging on into the corners of the table, just getting lots of bruises and. Yeah. And that's, you know, all the joys of having this disease. Yeah.
So did you have much knowledge of what retinitis pigmentosa was beforehand or any family history even?
No, no, I'm sorry. When I was me was about three and I was pregnant with Lucas. I did a story with 60 Minutes and they got all our DNA and we had it sent off. Actually, the DNA bank, I think, was in that bank in Western Australia, which they then sent off to Estonia, I think it was. But anyway, so at that time it came back his, they could not find the link to the you know, where it came from. No one in my family has the disease and it's funny, they have it just this week, really random phone call. The lady rings from Western Australia day night bank 13 years later and said that they've now they've been working on on this batch of testing and my mom was in that group and they said that they found the genome like the link where it's come from. But I won't find it yet because they have to send it to Dr. Burke, the ophthalmologist, and then he'll be able to tell me all about it. So I'm really looking forward to finding out like it where it's come from.
That's yeah, that's, that's crazy. So many years later.
Yeah. Than years later. And because the lady said back then I didn't have the technology like they do now. Oh sorry, sorry. I'm just blown away. Absolutely blown away. Sorry. And she said with my work I found they're doing the stem cell therapy. Yeah. So there's hope on the horizon. I really hope that I'm it's going to be all good news.
Absolutely. I got my genetic testing results back. I think it was late last year. At the end of last year. Yeah. And so I have what is called non syndromic Usher's syndrome. So Usher syndrome is the sight loss from OP and hearing loss is worrying. Yeah, but in a strange kind of twist. I think my my parents were the carriers, so I inherited the gene from them. But just the same with you. I have no family history of of Aki.
Where were you when you how old were you when you were diagnosed?
So I was diagnosed back in 2019 when I was about 22.
Oh, wow. And did you how did your story begin? Did it was it just from that night blindness that you couldn't see in the dark? Is that what made you get your eyes seen, too?
Yeah, when I was maybe 13 or 15 is when I noticed it, and I kind of sat on it for a really long time because growing up, my biggest fear was actually going blind.
Oh, wow.
So I was scared to, you know, acknowledge that changes were happening. And I guess, yeah, it just kept happening and I thought, alright, I have to, you know, finally tell someone and get to the bottom of this.
Oh, wow. Gosh, it's crazy.
It is. Um, so I'd like to switch and then to Big Brother.
Oh, yeah.
So in episode two of the current season, I saw a sort of brief glimpse of you using your white cane, and I just. Yeah, I got really excited and it was really great to see like disability representation in Australian media. So I was really wondering how accessible was the Big Brother House to you as a visually impaired person?
Um, well before going in to the show, like I had producers though it was funny because they were trying to like, I had like Zoom meetings and I couldn't get a real gauge on where my vision was as because I kept saying to them, Look, I'll be okay, I'll be able to do this and they can all. But Reggie, you're blind, you going blind and vision impaired. And I said, look, I was determined to get there and were like, no matter what. So they sent out our producer to my house and they gave me some tasks to do some running tasks and rolling balls along the ground and stacking caps and to get a gauge on where I was at. And the producer went back to the guys in Sydney and said, Look, this is, this is Reggie and this is what she can do. So they were really, really happy with that. And when I got into the house, um, I just had to work my way round like once, once I worked it with the step into the bathroom was, you know, just stays in the backyard. And it took me all right, maybe a few days to to try and get used to, to it. But like it wasn't specifically designed for someone with vision impairment because I used that house prior to making Big Brother VR series before I start was already there. But when I did the task so they would explain to was all in a great what we had to do, you know, if you had to climb up a rope and hang on and so forth, but they would always pull me aside and guide me through everything and I would tell me how far I was off the ground and that would put my kids there or my type one step so I could have a, you know, a guidance of where the step was, things like that. So they were very, very good in helping me with that. Sorry, climbing ivy Ivy things, you know, they go, Reggie, this is how far apart it's going to be. And so now they were lovely with that. They're awesome actually. Yeah.
That's, that's, yeah. That's really amazing to hear.
Yeah.
And I just want to say that I love seeing you on the show so much, your strength of character, your spirit, and the fact that you don't fall into society's stereotypes of what blind or visually impaired should look like. You know, you wear makeup. I love your makeup today, by the way.
I think you acted on.
Those beautiful.
Oh, I.
Think, you know, you're extremely independent and an amazing mum and you're showing the world that. We are so strong and we just wish to be treated like everyone else, you know, with dignity and respect.
Much differently, you know, because there is a big stigma around people who have vision impaired and blind, you know, they just think that, you know, we go to wear the big black glasses and we all have to have a guard dog and we and we can't do anything. And I'm like, this is I'm I'm hoping to raise much awareness about this. And I'm already doing that because a lot of people say like, wow, like Reggie, like you are bringing so much awareness to blindness. And, you know, I'm just so glad that I've gone on to the show and before going on to the show, also, because I had to have medical and medical with the doc mark, the doctors are doctors and all that stuff. And my eye specialist wasn't there the day that I had to have all this stuff done and this other guy was there I've never seen before. And he goes and he goes to me, Oh, no, no, no, you can't do this. You can't do this because it had on the form. Like, I'll be up, heart's climbing ladders, you know. And I said, Yes, I can. I said, I'm doing that. So I said, Sorry, I'm doing this. You're not stopping me from doing this. I'm doing it. And he's go, No, no, no. And then he rang and then then he rang the producers and was saying and I said, Look to the producers. I said, I'm doing this. I don't want someone stopping. This has been a dream of mine to go back on the show regardless, you know, whether I can see properly or not. And yeah, and I'm glad that I'm showing people that you can just get out there and help a guy. We yeah. It's really good.
Thank you so much, Reggie, for chatting with me today. It has been an absolute blast. We've learnt so much about you and your journey with sight loss and your time on Big Brother. I really look forward to watching you as the season moves on and I hate to be a bit biased here, but you have definitely got my vote.
Thanks very much to Beth Cody with Reggie Sorensen there. And if you'd like to hear the full interview, just head to your favorite podcast platform and search for Vision Australia Radio Interview Highlights. Or head to our Facebook page at Facebook.com slash via Radio Network. That's Facebook.com slash via radio network. I'm Sam Cooley and you're listening to Talking Vision on Vision Australia Radio, associated stations of Our Age and the Community Radio Network. If you're enjoying the show and you'd love to find out more like where to find local radio frequencies or a good spot to listen to past programs. You can find all this info and more on the Talking Vision web page. Just search talking vision and it should come up as the first option. You can also find the program on the podcast app of your choice or through the Vision Australia Library. And now back to the program. Today I'm joined by Matthew Leighton and Sam Rickard of Studio One Fame to talk all about Vision Australia Radio's Radio Radiothon taking place from the first to the 30th of June. Matthew, Sam, thank you so much for your time today. Welcome to the show. Oh, thank you. Yeah, thank you for having us, Sam. It's always good when we get to come together at times like this. But I've never met you before, and it's been an auspicious event for. So now why don't we start off with a bit of an overview of Studio One? Could you tell us what the show is all about? Well, so as you know, Sam, most of what Vision Australia Radio does is provide a reading service to sort of level the playing field for people who live with blindness or low vision. And the idea of what you do and what we do is perhaps to give a bit of a platform to people well, to our audience really, and to reflect our audience back at themselves. It's our job to get as many blind and low vision people's voices on the radio as we possibly can. And for us, that normally involves slightly longer, more relaxed interviews than your punchy, uptempo stuff. And yeah, so we've we've interviewed some big names, but we also like to make sure that we get people's opinions on air. Now we'll get onto the topic of radiothon and highlight the important work that Vision Australia Radio does for the community. We're asking people to dig deep and give what they can this month. So could you tell us a bit more about that? Yeah, the thing about radio, Sam, is the people just expect it to be there. You turn on the tap, out comes water. You turn on the radio. Outcomes, music or indeed what we mainly do, which is speech and valuable information services. But it takes quite a lot to make that work. So buildings, equipment, maintenance of said equipment, electricity and you know, most of the reading services we do are the reading is done by volunteers and that's great. And we love the way they donate their time, and I hope we thank them for that enough. But of course, somebody has got to coordinate them. Somebody is going to let them in the building. You know, this does take a team of we have teams of volunteers across the network and volunteer coordinators in Perth, in Adelaide and where you are in Melbourne and you know, running the station. The rough ballpark figure is about $2 million a year. We're well supported by Vision Australia, but as I'm sure you found with the the people that you interview is as I find with the people I interview, we're a stubborn bunch and we like to stand on our own two feet, don't we, Sam? Oh, definitely this much. It's a we don't like. I also don't necessarily like people telling us how to do stuff. You absolutely want to have that independence. That's very true now. Well, sir, anything else you wanted to add? No, just that anything above $2 in terms of donation, we appreciate times are hard and times are hard for all of us at the moment. And and looking to get harder. But any donation above $2 is tax deductible. We're very grateful, if you can if you can give us a little bit of help and all the details can be found at RVA Radio dot org. That's fair radio dot org. And on that note, I think it's time to wrap up for now. So thank you very much to you both. I've been speaking today with Matthew Leighton and Sam Rickard from Studio One all about the upcoming radiothon at Vision Australia Radio, running from the first to the 30th of June. Well. Winter is certainly well and truly arrived with a bang a day or two ahead of schedule. And long time listeners of the show will absolutely know what's coming up next. Joining me today to chat about the latest issue of, for your information, otherwise known as FII. We have none other than Helen Keller SRS joining us today. Helen, welcome to the show.
Thank you, Sam. It's always a pleasure being on Talking Vision. It's wonderful to be here. And yeah, like you say, it's we're in we're in winter at the moment. It's cold. So might as well get something to warm us up intellectually.
Very true. Very true. So, Helen, I understand there's a few things going on. Why don't we start off with a bit of an exciting bit of news? We've got a big employment campaign kicking off.
Yeah, we do. So this is something that Vision Australia has worked quite hard on. We wanted to kind of address the the large gap between people who are blind or have low vision and people who want to have a vision that are working. So unfortunately, you know, employment figures aren't great for our community. We have created this beautiful ad that is quite honest about what it's like being in a job interview if you're blind or have low vision. So I really recommend anyone to kind of go and watch it. It's it's pretty it's pretty interesting. It's it's a little bit daunting to kind of go through it a little bit awkward, but it all works out in the end. But I think it's really important to yeah. Send this off to as many people as, you know, anyone that's in the h.R. Or hiring field. It'll be great to kind of have, have that across the desk.
And we'll be chatting to one of the people who helped make it all happen, Reinier Konopka, on next week's show. So make sure to stick around to have a listen to that one. Now, Helen, another bit of exciting news with some fire bombing that happened. It's not as violent as it sounds. It's actually quite wholesome and exciting. So just, you know, tell us a bit about that one.
Yeah, you're right on this, Sam. It's this thing called Braille bombing. And it's basically people who are trying to learn a bit of Braille, trying to kind of make things more accessible to people who are blind or have low vision. They go around, make some cool little stamps with Braille on it. Some of them read Braille since 29, which I think is when Brown was invented. You know, I love reading that kind of thing. So it's it's been this little event that has created a a thirst for for more Braille around the city. So I'm curious to see if any of your listeners have have caught any of this Braille have seen it in in their day to day. So let us know.
Yeah, they're very interested to hear. And what else is going on from the FBI side of things?
Yeah, there's a few surveys, something that I found quite interesting. The advocacy team at Vision Australia are trying to kind of get some feedback on how the federal election went for people who are voting, who are blind or have low vision. So this is, you know, if you've used the telephone service or you had some, you know, strange or good experiences at the ballot box, we just want to get some information. So we've got that survey that you can complete just as a quick link in RFI. So I would highly recommend giving us some feedback if you've got some interesting stories. And the other survey is from Blind Sports Australia. They're hoping to kind of talk to anyone that is either blind, has low vision, is sighted or has participated in sport, or maybe recently decided not to participate in sport. They're looking to do a major survey around that.
Perfect. Thanks so much, Helen. That was Helen Bell. Cyrus there chatting to us all about the latest issue of, for your information, otherwise known as Ify. And of course, if you'd like to find out more about for your information, you can always had tour of the Vision Australia website at Vision Australia dot org. That's Vision Australia or one word dot org. Or of course you can also ring us on one 300 847466. That's a one 300 847466 and our team will be sure to punch it in the right direction. Helen, thank you so much for your time today. It a pleasure having you on the show.
Thank you, Sam. And yeah, it'll hit inboxes on Wednesday so that will be Wednesday, the 1st of June.
Finally this week, we're sad to report that our patch pioneer and Blind Citizens Australia stalwart Neville Kerr has passed away at the age of 82. Over many years, Neville was a major contributor to the work of Blind Citizens Australia and to the IPH movement, particularly through his work with the establishment and ongoing support of three up H Melbourne. Neville produced and presented more than 1100 editions of his weekly program, then simply called Horizons, and was heavily involved with the recording and broadcast production of material from both conventions and other major events. Neville also served on the Board of the Association of the Blind, now Vision Australia, for around five years in the late eighties and early nineties. Above all, Neville recognised that radio could provide access to many forms of information for people who are blind or have low vision. This week's episode of New Horizons, Bessie's weekly radio programme and podcast will be dedicated to further reflections on Neville Kerr's life and work on behalf of Talking Vision and Vision Australia Radio. We offer our deepest sympathies to Neville's family and many friends. And that's all we have time for today. You've been listening to Talking Vision. Talking Vision. It's a production of Vision Australia Radio. Thanks to all involved with putting the program together. And remember, we love your feedback and comments. You can contact us at Talking Vision Vision Australia dot org. That's Talking Vision or one word at vision Australia dot org. But until next week, it's five for now.
You can contact Vision Australia by phoning us any time during business hours on one 300 847466. That's one 300 847466 or by visiting vision Australia dot org that's mission Australia dot hall.