WEBVTT - Talking Vision 712 Week Beginning 22nd of January 2024 0:00:13.208 --> 0:00:18.968 From Vision Australia. This is talking vision. And now here's 0:00:18.968 --> 0:00:20.948 your host, Sam Colley. 0:00:23.578 --> 0:00:26.668 Hello everyone. It's great to be here with you. And 0:00:26.668 --> 0:00:29.638 for the next half hour, we talk matters of blindness 0:00:29.638 --> 0:00:33.268 and low vision. Welcome to the program. We've got a 0:00:33.268 --> 0:00:35.548 little bit of a different show in store for you 0:00:35.548 --> 0:00:39.418 this week as we present a few interviews from the 0:00:39.418 --> 0:00:43.918 carnival day, broadcast live from the opening day of Midsummer 0:00:43.918 --> 0:00:49.318 Festival at the Alexandra Gardens in Melbourne. Midsummer is the 0:00:49.318 --> 0:00:56.308 preeminent festival in Victoria for the Lgbtqia+ community, and today 0:00:56.308 --> 0:01:00.568 we've got three interviews from the guests on the program 0:01:00.568 --> 0:01:05.878 over the three hours. Starting off with Blind Ambassador Karen 0:01:05.878 --> 0:01:11.368 Negroni followed up with Nilsson Govan from Vita Veritas, who's 0:01:11.368 --> 0:01:14.758 here to tell us all about some audio. Describe tell 0:01:14.758 --> 0:01:18.958 us of the festival. And last but certainly not least, 0:01:18.958 --> 0:01:23.698 we're joined by Lina mona from women with disabilities Victoria, 0:01:23.698 --> 0:01:27.538 who are committed to creating a safer and more inclusive 0:01:27.538 --> 0:01:32.308 state for women with disabilities. I hope you'll enjoy this 0:01:32.308 --> 0:01:41.808 special Midsummer Festival edition of Talking Vision. And now his 0:01:41.808 --> 0:01:45.408 man test with Karen test kicked off the interview with 0:01:45.408 --> 0:01:49.308 Karen by asking him about his low vision journey. 0:01:49.488 --> 0:01:52.698 Absolutely. So I live with Usher syndrome. That's a combination 0:01:52.698 --> 0:01:56.688 of retinitis pigmentosa that causes blindness and partial hearing loss 0:01:56.688 --> 0:01:59.028 as well. So you're probably going to see me walking 0:01:59.028 --> 0:02:01.968 around with my cane and my hearing aids in. It's 0:02:01.968 --> 0:02:04.758 a degenerative condition. So I was diagnosed when I was 0:02:04.758 --> 0:02:09.738 about 13. And now at 37, I have less than 3% 0:02:09.738 --> 0:02:11.688 of sight remaining. And in a few years that'll be 0:02:11.688 --> 0:02:15.738 gone too. But you live with what you have, and I, 0:02:15.738 --> 0:02:19.428 you know, I can't can't even think of being happier 0:02:19.458 --> 0:02:21.108 other than having a disability. 0:02:21.288 --> 0:02:24.018 It's an interesting, you know, it's because I was born 0:02:24.018 --> 0:02:26.958 blind and so I never had any sight. And so 0:02:26.958 --> 0:02:28.668 I never really knew, you know, what it was like 0:02:28.668 --> 0:02:30.618 to have sights that must have been quite an adjustment 0:02:30.618 --> 0:02:31.188 for you. 0:02:31.188 --> 0:02:33.738 You know, that's a really interesting question. Someone actually asked 0:02:33.738 --> 0:02:36.438 me once, would you rather be born blind or born 0:02:36.438 --> 0:02:39.198 sighted and lose your sight? And I didn't know how 0:02:39.198 --> 0:02:41.478 to answer that question to be honest with you, because 0:02:41.478 --> 0:02:43.968 I was confused. So I looked it up and then 0:02:43.968 --> 0:02:46.518 I started watching stuff on YouTube, and there was this, uh, 0:02:46.518 --> 0:02:48.738 talk show where they had a fully blind person that 0:02:48.738 --> 0:02:51.588 was born blind, and someone who has retinitis pigmentosa that 0:02:51.588 --> 0:02:54.018 has lost their sight over time. And the person that 0:02:54.018 --> 0:02:56.208 was born blind said, I would rather be born blind, 0:02:56.208 --> 0:02:57.978 because if I lost my sight over time, I'd be 0:02:57.978 --> 0:03:00.768 really pissed off. And then the person who was born 0:03:00.768 --> 0:03:03.348 fully sighted and started to lose their sight said they 0:03:03.348 --> 0:03:06.558 would rather be born sighted and lose their sight slowly 0:03:06.558 --> 0:03:09.288 over time because at least they got to see something. 0:03:09.288 --> 0:03:12.138 So I would yeah, like to throw that back onto you. 0:03:12.138 --> 0:03:13.458 What do you think about that? 0:03:13.668 --> 0:03:16.638 Well, I think I agree with the with the born blind. 0:03:16.638 --> 0:03:18.348 In some ways it would have been lovely to see 0:03:18.348 --> 0:03:20.178 some of the wonderful things in, you know, being able 0:03:20.178 --> 0:03:22.278 to see things like sunsets and colors and, you know, 0:03:22.278 --> 0:03:24.078 rather than just imagine them. But also it would have 0:03:24.078 --> 0:03:25.938 made my life so much difficult, so much more difficult 0:03:25.938 --> 0:03:28.668 if I had lost my sight later. So, yeah, I 0:03:28.668 --> 0:03:31.128 think I think it sounds like we're, you know, we're 0:03:31.128 --> 0:03:33.468 happy with we're happy with how life turned out. Yeah. 0:03:33.468 --> 0:03:34.728 Which is a good thing. Yes. 0:03:34.728 --> 0:03:35.958 It's a great thing. 0:03:35.958 --> 0:03:36.498 Absolutely. 0:03:36.858 --> 0:03:39.228 It's tricky for me because I'm right in the middle. 0:03:39.228 --> 0:03:42.918 I've always, um, had, um, that problem where I've just. 0:03:42.918 --> 0:03:46.548 I have had vision conditions my whole life but been, 0:03:46.548 --> 0:03:50.718 you know, regarded as quote unquote, not blind enough, but, um, 0:03:50.718 --> 0:03:54.348 I think being able to see artworks and scenery and 0:03:54.348 --> 0:03:58.128 landscapes and things, at least having those memories that have 0:03:58.128 --> 0:04:00.468 stuck with you for the rest of your life, just 0:04:00.468 --> 0:04:03.378 in some ways that can cheer you up. In some ways, 0:04:03.378 --> 0:04:05.718 you just think back to a good time when you 0:04:05.718 --> 0:04:09.258 had that sort of experience. But, um, it is definitely 0:04:09.258 --> 0:04:11.988 a very tricky question because, um, as I said, with 0:04:11.988 --> 0:04:15.438 some with low vision, at some it's right in the middle. But, um, 0:04:15.438 --> 0:04:18.948 Karen will come back to you. You've mentioned previously the 0:04:18.948 --> 0:04:22.068 need to come out twice. So could you explain what 0:04:22.068 --> 0:04:22.818 that's about? 0:04:23.118 --> 0:04:27.168 Absolutely. So, well, first things first, I meant mid-summer. So 0:04:27.168 --> 0:04:30.648 the obvious first one is being gay. Uh, I think 0:04:30.648 --> 0:04:34.038 growing up, um, back then, there was a certain perception 0:04:34.038 --> 0:04:36.558 that if you're gay, you're supposed to be flamboyant or, 0:04:36.558 --> 0:04:39.648 you know, you've got to be loud and out there. 0:04:39.648 --> 0:04:42.048 And for me, I didn't fit that mold to me. 0:04:42.048 --> 0:04:43.728 I just looked at myself as a normal guy who 0:04:43.728 --> 0:04:46.938 happens to be gay. So when I met people, you know, 0:04:46.938 --> 0:04:48.468 it was like, oh, well, you don't look gay or 0:04:48.468 --> 0:04:49.788 you don't act gay. And I was like, what does 0:04:49.788 --> 0:04:52.668 that even mean? And then the second closet being, because 0:04:52.668 --> 0:04:55.308 my eyes look normal, and then people see me with 0:04:55.308 --> 0:04:57.708 a cane and when my cane is away, when I 0:04:57.708 --> 0:04:59.598 used to manage without my cane and I would tell 0:04:59.598 --> 0:05:01.848 them that I'm blind, they wouldn't believe me. So I 0:05:01.848 --> 0:05:03.978 would have to sort of convince them and explain the 0:05:03.978 --> 0:05:06.618 whole blindness is a spectrum thing to them, and it 0:05:06.618 --> 0:05:08.868 almost felt like coming out of a closet, because I 0:05:08.868 --> 0:05:11.478 hid my blindness for a really long time, because I 0:05:11.478 --> 0:05:13.188 felt a sense of shame. I'm not going to like 0:05:13.188 --> 0:05:16.008 growing up, you know, as a gay guy in a 0:05:16.008 --> 0:05:18.108 world where there's so much emphasis on the way you 0:05:18.108 --> 0:05:20.718 look now, you add to that having a disability that 0:05:20.718 --> 0:05:22.788 requires me having to use a cane. So I felt 0:05:22.788 --> 0:05:24.918 a sense of shame back then. Obviously, I don't feel 0:05:24.918 --> 0:05:27.258 like that anymore. But yeah, I did feel like I 0:05:27.258 --> 0:05:29.028 had to come out of the blind closet because I 0:05:29.028 --> 0:05:31.368 would have to hide it, uh, because I didn't want 0:05:31.368 --> 0:05:32.928 to be judged. And then I would tell people and 0:05:32.928 --> 0:05:34.248 then explain the whole thing. 0:05:34.248 --> 0:05:36.078 Would you say there needs to be a bit more 0:05:36.078 --> 0:05:38.208 awareness of blindness and low vision still? 0:05:38.208 --> 0:05:40.878 Absolutely. This is why I'm on a mission to raise awareness. 0:05:40.878 --> 0:05:44.148 And I started my work as an advocate about two 0:05:44.148 --> 0:05:47.448 years ago, and that started from me having to give 0:05:47.448 --> 0:05:50.688 up my marketing career, a career that depended extremely on 0:05:50.688 --> 0:05:53.598 my side because I was a graphic designer, a filmmaker, 0:05:53.598 --> 0:05:56.508 and when I reached the stage where I could not 0:05:56.508 --> 0:05:58.698 use a laptop. Now, don't get me wrong, blind people 0:05:58.698 --> 0:06:02.268 can use laptops, but blind people cannot use a graphic 0:06:02.268 --> 0:06:05.778 design software like Photoshop or film editing software. That's quite complex. 0:06:05.778 --> 0:06:09.318 So I had to quote unquote, retire from that career. 0:06:09.318 --> 0:06:11.448 And then I felt like I sort of hit rock bottom. 0:06:11.448 --> 0:06:13.308 That was not a really good time for me mental 0:06:13.308 --> 0:06:17.118 health wise, because I really felt lost. And that was, 0:06:17.118 --> 0:06:20.418 I guess, my calling when it came to being an advocate. 0:06:20.418 --> 0:06:22.878 And I was so sick and tired of people telling 0:06:22.878 --> 0:06:25.368 me that I don't look blind, and that came with judgment. 0:06:25.368 --> 0:06:28.428 It wasn't, you know, uh, some people said, you don't 0:06:28.428 --> 0:06:30.168 look blind, as if it's a compliment. I'm like, what 0:06:30.168 --> 0:06:31.878 does that even mean? And I said, would you tell 0:06:31.878 --> 0:06:34.758 someone from China, you don't look Chinese? Would you tell 0:06:34.758 --> 0:06:36.948 someone from America, you don't look American like, you know, 0:06:36.948 --> 0:06:39.858 what does that even mean? And that's what led me to. 0:06:40.788 --> 0:06:43.368 Raise awareness. And I guess that's why I'm sitting here today. 0:06:43.368 --> 0:06:46.188 So I'm glad it worked out in that sense, you know. 0:06:46.488 --> 0:06:49.038 Well, you know, um, one of the, the main themes 0:06:49.038 --> 0:06:52.398 for this live broadcast is really talking about the intersectionality 0:06:52.398 --> 0:06:56.088 between the queer community and the community of people with disabilities. So, 0:06:56.088 --> 0:06:58.548 I mean, as, as a gay man with a disability, 0:06:58.548 --> 0:07:01.188 I mean, what are some of the the challenges that 0:07:01.188 --> 0:07:02.298 you've been faced with? 0:07:02.538 --> 0:07:04.398 I could write a book. I mean, I don't even 0:07:04.398 --> 0:07:08.208 know where to begin. There's, you know, there is so 0:07:08.208 --> 0:07:11.298 much judgment out there. It's it's so like it's not 0:07:11.298 --> 0:07:14.358 for the faint hearted. I've said this before, you know, uh, 0:07:14.358 --> 0:07:16.668 a lot of people think people with disabilities are weak. 0:07:16.668 --> 0:07:18.378 And I'm like, dude, like, you have no idea how 0:07:18.378 --> 0:07:20.598 hard it is. Like, if you have a disability and 0:07:20.598 --> 0:07:23.658 you're out there living life, you're strong. Like, don't ever 0:07:23.658 --> 0:07:25.788 underestimate a person with a disability. 0:07:26.118 --> 0:07:29.748 And do you think every person living with blindness or 0:07:29.748 --> 0:07:33.318 low vision should be an advocate for their community, or 0:07:33.558 --> 0:07:36.048 what's your sort of perspective on that? 0:07:36.318 --> 0:07:39.588 So look, I will say this, I'm really passionate about it, 0:07:39.588 --> 0:07:42.318 but it's it takes a toll on your mental health. 0:07:42.318 --> 0:07:43.158 You know, it does. 0:07:43.158 --> 0:07:43.518 Yeah. 0:07:43.518 --> 0:07:45.918 When you're constantly talking about it, there are days where 0:07:45.918 --> 0:07:48.888 I get tired and, you know, because I don't have 0:07:48.888 --> 0:07:51.078 a big following at all like that on social media, 0:07:51.078 --> 0:07:52.548 but like I do have a bit of a following. 0:07:52.548 --> 0:07:54.378 And like, if I don't post, you know, for a 0:07:54.378 --> 0:07:56.478 couple of days, I'll get messages that you okay, you 0:07:56.478 --> 0:07:59.418 haven't posted. I look forward to your messages. And there 0:07:59.418 --> 0:08:02.358 are times where I hit, uh, I guess, um, fatigue 0:08:02.358 --> 0:08:05.358 as an advocate. And I don't think it's for everyone. 0:08:05.358 --> 0:08:07.458 You don't have to be an advocate if you want 0:08:07.458 --> 0:08:10.098 to be an advocate, be an advocate. But my only 0:08:10.248 --> 0:08:13.308 my only suggestion is be proud, you know, don't don't 0:08:13.308 --> 0:08:16.038 live in shame. Uh, you are who you are for 0:08:16.038 --> 0:08:18.198 a reason. And this is your destiny. And, you know, 0:08:18.198 --> 0:08:20.958 that sounds really philosophical, but you don't have to be 0:08:20.958 --> 0:08:23.838 an advocate, but don't live in shame. And it's also 0:08:23.838 --> 0:08:25.968 not easy to not live in shame, because I lived 0:08:25.968 --> 0:08:27.258 in shame for a long time. 0:08:27.258 --> 0:08:29.298 And you know that that message, you know, don't live in. 0:08:29.448 --> 0:08:32.148 I mean, that's just that's applicable to to everything that 0:08:32.148 --> 0:08:35.298 we are celebrating and promoting and raising awareness of today. 0:08:35.298 --> 0:08:37.878 So I mean, that's just a fantastic quote. So you 0:08:37.878 --> 0:08:40.398 moved to Melbourne last year. Is that right? 0:08:40.398 --> 0:08:42.288 Correct. Uh, February last year. 0:08:42.288 --> 0:08:44.598 So I've been here for about almost a year now. 0:08:44.718 --> 0:08:48.078 So have you felt welcomed by the Melbourne queer community 0:08:48.078 --> 0:08:50.058 or maybe a bit on the outer? What's what's been 0:08:50.058 --> 0:08:51.258 your experience with that? 0:08:51.258 --> 0:08:54.888 Absolutely. So look, back in Perth, I was really bad gay. 0:08:54.888 --> 0:08:56.868 I didn't do a lot of gay things. I didn't 0:08:56.868 --> 0:08:59.088 go to gay festivals. Didn't do, didn't do. 0:08:59.358 --> 0:09:01.098 Okay, I don't know. You know, there's. 0:09:01.098 --> 0:09:03.528 Such a thing. Trust me, I was not I was not, 0:09:03.528 --> 0:09:05.628 you know, one of those people that was out there 0:09:05.628 --> 0:09:08.448 at pride events and. No, not at all. Um, and 0:09:08.448 --> 0:09:10.788 I think partly to do with my side. And then 0:09:10.788 --> 0:09:15.228 I was approached by, um, a lovely person called Emma 0:09:15.468 --> 0:09:19.008 from Chillout Festival in Daylesford, and she invited me to 0:09:19.008 --> 0:09:22.578 attend as ambassador when I was in Albany in WA. 0:09:22.578 --> 0:09:24.978 And that sort of opened my eyes. And that's when 0:09:24.978 --> 0:09:27.708 I was first introduced to the queer community in Melbourne, 0:09:27.708 --> 0:09:31.188 and so welcoming and so lovely. And, you know, I 0:09:31.188 --> 0:09:33.378 just sort of started thinking I had this fear in 0:09:33.378 --> 0:09:35.508 my head that I'll be judged, you know, for being 0:09:35.508 --> 0:09:37.698 a person with a disability. And now look at me. 0:09:37.698 --> 0:09:40.968 I'm sitting at midsummer with you awesome people talking about 0:09:40.968 --> 0:09:43.668 life as a gay blind person, you know? So I'm 0:09:43.668 --> 0:09:46.848 so thrilled, uh, and I'm a little mad at myself 0:09:46.848 --> 0:09:49.248 for not doing this sooner, but I think everything happens 0:09:49.248 --> 0:09:50.748 for a reason at the right time. 0:09:51.018 --> 0:09:53.928 Certainly it does. And it's a it's a new year. 0:09:53.928 --> 0:09:56.538 I don't know if some new year, new year kind 0:09:56.538 --> 0:10:00.168 of New Year's resolution time, but, um, are you energized 0:10:00.168 --> 0:10:03.018 or exhausted at the thought of fighting the fight? 0:10:03.258 --> 0:10:08.598 What are you talking about? I'm always exhausted. Even sometimes 0:10:08.598 --> 0:10:11.088 I'm so exhausted from being exhausted. You know, like, it's 0:10:11.088 --> 0:10:12.468 just one of those things where I just want a 0:10:12.468 --> 0:10:14.838 day off. Absolutely. And then after the day off, you 0:10:14.838 --> 0:10:16.518 want a day off because you had a day off. 0:10:16.578 --> 0:10:17.088 Day off from. 0:10:17.088 --> 0:10:17.568 The day off. 0:10:17.598 --> 0:10:20.478 Yeah, yeah. Look, when you live with a condition where 0:10:20.478 --> 0:10:24.378 you can't see and you can't hear properly, it's quite taxing. Uh, 0:10:24.378 --> 0:10:28.518 it gets quite tiring. Um, and, you know, as an advocate, 0:10:28.518 --> 0:10:30.558 I feel like I have to be strong for other 0:10:30.558 --> 0:10:33.408 people all the time. Uh, so does, you know, there 0:10:33.528 --> 0:10:35.778 are definitely times where I feel so tired that I 0:10:35.778 --> 0:10:38.778 just need to hide in my house with the doors closed. 0:10:39.138 --> 0:10:39.708 Yes. 0:10:39.708 --> 0:10:42.498 Yeah. Of course, I sometimes feel exactly the same way, 0:10:42.498 --> 0:10:43.038 if I'm honest. 0:10:43.038 --> 0:10:43.308 So. 0:10:43.698 --> 0:10:46.008 Yeah, I'm sure that's wonderfully validating for a lot of 0:10:46.008 --> 0:10:46.518 our listeners. 0:10:46.518 --> 0:10:47.298 Absolutely. 0:10:47.298 --> 0:10:50.598 It's okay to be antisocial. It's okay to not want 0:10:50.598 --> 0:10:51.498 to see anyone. 0:10:51.498 --> 0:10:54.438 Yes. And can you tell us why you decided to 0:10:54.438 --> 0:10:57.438 become an ambassador at this year's mid-summer? 0:10:58.278 --> 0:11:01.338 Well, I, you know, well, firstly, they asked me and 0:11:01.338 --> 0:11:03.738 I'm thrilled. And I guess the reason I'm thrilled is 0:11:03.738 --> 0:11:07.578 because a young Karen would have never believed that a 0:11:07.578 --> 0:11:11.868 disabled Karen would be an advocate at such a big 0:11:11.868 --> 0:11:15.198 gay festival, you know? So when the opportunity came along, 0:11:15.198 --> 0:11:17.598 it was just like it wasn't even a, um, I 0:11:17.628 --> 0:11:21.198 was like, yes, yes, yes, yes, yes, because I want 0:11:21.198 --> 0:11:23.268 to be that person that I didn't have when I 0:11:23.268 --> 0:11:23.808 was a kid. 0:11:24.378 --> 0:11:25.548 Of course. Absolutely. 0:11:25.548 --> 0:11:27.588 Well, I'm sure young, I'm sure young Karen would be 0:11:27.588 --> 0:11:31.428 extremely proud. Um. Of what? Of what older Karen has achieved. 0:11:31.428 --> 0:11:33.588 Yes. Minus the weight gain. But, yeah. 0:11:33.978 --> 0:11:35.238 We've all done that. 0:11:35.238 --> 0:11:36.798 Oh. So. Yeah. 0:11:36.798 --> 0:11:41.498 Uh, especially after, um, the festive season. All the wonderful 0:11:41.498 --> 0:11:44.198 meals and bits and pieces and, you know, letting your 0:11:44.198 --> 0:11:46.688 hair down and having having a bit of fun. 0:11:46.688 --> 0:11:48.998 And that's what Carnival is about, really. It is it 0:11:48.998 --> 0:11:51.908 is celebrating the diversity in in our community is what 0:11:51.908 --> 0:11:54.998 Virgin Australia is also about. And, you know, people of 0:11:54.998 --> 0:11:59.108 all shapes and sizes, genders, sexualities, you know, abilities, you 0:11:59.108 --> 0:12:01.298 know that that's what today is all about. And that's 0:12:01.298 --> 0:12:04.628 why we're so happy to be celebrating the just how 0:12:04.628 --> 0:12:06.638 glorious that is 100%. 0:12:06.638 --> 0:12:09.938 And you've talked about young Karen, which is, ironically, the 0:12:09.938 --> 0:12:12.998 old Karen, but we'll work that out later. But how 0:12:12.998 --> 0:12:16.718 can we follow 2024? Karen, you know, how can we 0:12:16.718 --> 0:12:17.648 support him? 0:12:17.648 --> 0:12:20.138 Well, when I find that, I'll let you know, uh, 0:12:20.138 --> 0:12:22.208 because I can barely keep up with what's going on. 0:12:22.208 --> 0:12:25.928 But what? I guess I'm on a mission now to 0:12:25.928 --> 0:12:30.098 do things that I didn't think I would do. Perfect example, 0:12:30.128 --> 0:12:33.068 being sitting here today at a midsummer festival as a 0:12:33.068 --> 0:12:35.918 proud gay man with a disability. So my my plan 0:12:35.918 --> 0:12:38.888 is to keep going. I am blessed to have, uh, 0:12:38.888 --> 0:12:42.068 two jobs, one being at Guide Dogs Australia, which is 0:12:42.068 --> 0:12:46.418 where I get to share my lived experience to raise awareness, 0:12:46.418 --> 0:12:49.268 and then my own job, which is life as an advocate, 0:12:49.268 --> 0:12:52.568 which is where I get to create content with my 0:12:52.568 --> 0:12:55.388 own twist, because I'm not one of those serious advocates, 0:12:55.388 --> 0:12:58.238 and I often get in trouble on Instagram because my 0:12:58.238 --> 0:13:00.518 sense of humor is a little strange. I guess. You know, 0:13:00.518 --> 0:13:02.888 I would post things and then people either love it 0:13:02.888 --> 0:13:04.478 or they're like, dude, what are you what are you doing? 0:13:04.478 --> 0:13:07.778 That makes no sense, you know? So I guess 2024 Karen, 0:13:07.778 --> 0:13:09.788 you can follow me on Instagram if you like. It's 0:13:09.788 --> 0:13:12.158 just my first name, last name with an N in 0:13:12.158 --> 0:13:15.968 the middle. So it's Karen and Granny, and, uh, what 0:13:15.968 --> 0:13:18.458 I do is I share my life as someone with 0:13:18.458 --> 0:13:22.118 retinitis pigmentosa usher syndrome. I use my graphic design skills 0:13:22.118 --> 0:13:25.538 to simulate what it is that someone like me does see, 0:13:25.538 --> 0:13:28.868 and I found that that's really helping people that have 0:13:28.868 --> 0:13:32.168 family members that have retinitis pigmentosa, because now they can 0:13:32.168 --> 0:13:35.228 actually see what they love once. See if that makes sense. 0:13:35.228 --> 0:13:37.808 It does. No. It's been an absolute pleasure to chat 0:13:37.808 --> 0:13:42.158 with you today, Karen. I've been speaking today with Karen Nagorny, 0:13:42.158 --> 0:13:46.358 a blind ambassador from the Midsummer Festival, who joined us 0:13:46.358 --> 0:13:50.348 today to chat all about his wonderful advocacy work. Karen, 0:13:50.348 --> 0:13:53.078 it's been a pleasure to chat with you. Um, yeah. 0:13:53.078 --> 0:13:54.218 Thank you so much for your time. 0:13:54.218 --> 0:13:54.728 I don't want to. 0:13:54.728 --> 0:13:55.208 Leave, though. 0:13:55.208 --> 0:13:57.698 I'm having so much fun. I know I miss you. Oh, 0:13:57.698 --> 0:13:58.598 we could talk forever. 0:13:58.598 --> 0:14:08.998 But unfortunately, we've got to go. I'm Sam Cole, and 0:14:08.998 --> 0:14:13.498 you're listening to this special Midsummer Festival edition of Talking 0:14:13.498 --> 0:14:19.018 Vision on Vision Australia Radio, associated stations of RPM and 0:14:19.018 --> 0:14:23.248 the Community Radio Network. I hope you enjoyed that interview 0:14:23.248 --> 0:14:27.148 there with Karen Negroni. If you missed any part of 0:14:27.148 --> 0:14:30.178 that interview with Karen or you'd love to listen to 0:14:30.178 --> 0:14:34.168 it again. Talking vision is, of course, available on the 0:14:34.168 --> 0:14:40.648 Vision Australia Radio website at RVA radio.org. That's RVA radio.org. 0:14:40.678 --> 0:14:44.128 You can also find the program on the podcast app 0:14:44.128 --> 0:14:48.088 of your choice or through the Vision Australia library. And 0:14:48.088 --> 0:14:51.958 now his man Tess with Neil Gunn. Tess began the 0:14:51.958 --> 0:14:55.798 interview with Nil Gun by asking her about when the 0:14:55.798 --> 0:15:00.058 organization was founded and what prompted them to get it 0:15:00.058 --> 0:15:01.078 off the ground. 0:15:01.108 --> 0:15:04.408 It was formed in 2020, but it is off the 0:15:04.408 --> 0:15:07.738 back of a 25 year career in disability arts and 0:15:07.738 --> 0:15:11.968 working as an inclusive arts practitioner, collaborating with lots of 0:15:11.968 --> 0:15:16.828 diverse artists and makers, including people and performers and artists 0:15:16.828 --> 0:15:21.538 who are blind and have low vision. And come 2020. Yes, 0:15:21.538 --> 0:15:24.058 during the pandemic. What a time to form a company. 0:15:24.058 --> 0:15:28.018 It's a not for profit bringing along the amazing staff 0:15:28.018 --> 0:15:32.548 that had been working with over time and improving inclusion 0:15:32.548 --> 0:15:36.778 of accessible events in festivals across performing and visual arts. So. 0:15:36.778 --> 0:15:40.678 Oh wow. So once we were trained by the then 0:15:40.678 --> 0:15:45.658 access Coordinator, Janine Sidhu and Katrina Gab, we were absolutely 0:15:45.658 --> 0:15:50.548 passionate about bringing accessible arts to the independent, small, medium 0:15:50.548 --> 0:15:52.408 and big arts sector. 0:15:52.408 --> 0:15:55.468 And now tell us a little bit more about the 0:15:55.468 --> 0:15:57.568 carnival day guided tours. 0:15:57.898 --> 0:16:02.698 The carnival day guided tours, uh, tailored. So there's no 0:16:02.698 --> 0:16:05.548 formal tour as such, but that the tours can happen 0:16:05.548 --> 0:16:09.388 at any time upon request, by prior arrangement, by ringing 0:16:09.388 --> 0:16:14.368 the access hotline, and also finding us at the information tent. 0:16:14.578 --> 0:16:17.908 We want to tailor it to the. Because there's so 0:16:17.908 --> 0:16:20.548 much to experience at this carnival that it can be 0:16:20.548 --> 0:16:22.288 tailored to people's interests. 0:16:22.288 --> 0:16:25.648 That's fantastic news, because there's so many different things for 0:16:25.648 --> 0:16:29.458 people to discover. So really exciting to hear that, um, 0:16:29.458 --> 0:16:32.338 people can have their own unique experience. 0:16:32.338 --> 0:16:36.418 It certainly is very, very tailored to, you know, the individual. 0:16:36.598 --> 0:16:39.748 It's fantastic. And I mean, is this the first time that, 0:16:39.748 --> 0:16:42.298 you know, these tours have been made available at midsummer. 0:16:42.418 --> 0:16:45.748 In the carnival context? Um, no, it's been we've been 0:16:45.748 --> 0:16:48.448 available and on site every year for the past, I 0:16:48.448 --> 0:16:51.148 think three years. And prior to that there was a 0:16:51.148 --> 0:16:55.018 design tool by description Victoria back then that also attracted 0:16:55.018 --> 0:16:58.558 a large volume of people in a group based experience. Um, 0:16:58.558 --> 0:17:01.828 we we are still sort of raising community awareness, as 0:17:01.828 --> 0:17:05.488 you know, about the accessibility and inclusion at festivals like this. 0:17:05.488 --> 0:17:09.448 And so I think, um, after this year, conversation could 0:17:09.448 --> 0:17:13.618 be had around, you know, really designing a more formalized 0:17:13.618 --> 0:17:16.948 tours whilst keeping the individual sort of tailored tours going 0:17:16.948 --> 0:17:17.578 as well. 0:17:17.578 --> 0:17:18.148 Okay. 0:17:18.148 --> 0:17:20.818 And, um, no. Go on. How do you think Midsummer's 0:17:20.818 --> 0:17:23.788 going in their efforts to be more accessible? 0:17:23.788 --> 0:17:26.878 I feel that midsummer have a lot of integrity in 0:17:26.878 --> 0:17:31.498 their intentions and their commitments, and they demonstrate that in 0:17:31.498 --> 0:17:35.398 really tangible ways. And the ways that they express that 0:17:35.398 --> 0:17:38.398 is by involving the community, the blind and low vision 0:17:38.398 --> 0:17:45.508 community from weather advisory groups or consultants, um, engaging different artists, um, 0:17:45.508 --> 0:17:50.878 and increasing programming of accessible events and that consultation and 0:17:50.878 --> 0:17:53.668 being led by the community as well, in terms of 0:17:53.668 --> 0:17:58.228 their interests into what would be really suitable, um, to 0:17:58.228 --> 0:18:01.828 offer the community in terms of their, you know, training. 0:18:01.828 --> 0:18:05.188 And it's an organisational approach and there is a really 0:18:05.188 --> 0:18:09.688 big saturation. It's not one area of the organisation that 0:18:09.688 --> 0:18:14.038 is sort of upskilling and improving their capacity, their capabilities 0:18:14.038 --> 0:18:17.398 and their confidence. But all tiers, from top to bottom, um, 0:18:17.398 --> 0:18:21.568 right down to our volunteers. And, you know, there's resources 0:18:21.568 --> 0:18:24.568 and that attitude, which is the most important one, which is, 0:18:24.568 --> 0:18:28.768 you know, continuous improvement like that feedback loop is so 0:18:28.768 --> 0:18:32.878 important in terms of how access evolves in the arts 0:18:32.878 --> 0:18:35.488 broadly as well as across Midsummer Festival. 0:18:36.328 --> 0:18:39.428 So there's an exciting event happening on the 1st of 0:18:39.428 --> 0:18:41.758 February at the Art centre at the Overflow Theatre. Tell 0:18:41.758 --> 0:18:42.478 us about that. 0:18:42.478 --> 0:18:46.258 So the production is called overflow, which is taking place 0:18:46.258 --> 0:18:50.248 at the Arts Centre Melbourne, um, specifically at the Fairfax 0:18:50.248 --> 0:18:55.018 Theatre on the 1st of February. And overflow premiered in 0:18:55.018 --> 0:18:58.438 London in 2020, and it's followed by an Australian season 0:18:58.438 --> 0:19:02.518 in 2022. And it's coming back again this year. Critically acclaimed, 0:19:02.518 --> 0:19:07.748 it gives voice to trans identities and. Written by Travis 0:19:07.988 --> 0:19:12.248 Benza and directed by Dino Demetriades. And in terms of 0:19:12.248 --> 0:19:15.578 Travis's quote, they say club toilets have taught me more 0:19:15.578 --> 0:19:20.378 about sisterhood than any book. Oh well. And so the 0:19:20.378 --> 0:19:23.558 stage is set as a toilet, as a cubicle where 0:19:23.558 --> 0:19:26.828 Rosie is inside, and there's all these different encounters and 0:19:26.828 --> 0:19:30.218 monologues and stories that are told in that space. 0:19:30.248 --> 0:19:30.818 Oh my God. 0:19:30.938 --> 0:19:34.958 Yeah, that sounds incredible. Unmissable. And just finally nail gun. 0:19:34.958 --> 0:19:38.798 There's a couple more exciting events going on the Victoria's 0:19:38.798 --> 0:19:42.788 Pride Travelling Touch Tour, and also the Nocturnal Hot and 0:19:42.788 --> 0:19:45.968 Bothered Tactile Tour. So just to wrap up, tell us 0:19:45.968 --> 0:19:46.928 a bit about them. 0:19:46.958 --> 0:19:49.718 Well, I want to talk about Victoria's Pride Travelling Touch 0:19:49.718 --> 0:19:52.628 Tour because it follows on from the success of the 0:19:52.628 --> 0:19:55.148 inaugural one that we ran last year. It was booked 0:19:55.148 --> 0:19:58.598 out like overnight like hotcakes. And so we're running it 0:19:58.598 --> 0:20:01.658 again this time, you know, again with that community feedback, 0:20:01.658 --> 0:20:05.468 a little bit longer with more interaction with different artists. 0:20:05.468 --> 0:20:11.738 But it's essentially curated to encompass art, music, roving performances, 0:20:11.738 --> 0:20:16.808 tactile and participatory activities, going into different bars and businesses 0:20:16.808 --> 0:20:19.718 and really getting to be immersed in that community, that 0:20:19.718 --> 0:20:24.458 street party, the atmosphere in a really guided and supportive 0:20:24.458 --> 0:20:28.178 and fun and dynamic way. So that takes place on Sunday, 0:20:28.178 --> 0:20:32.288 the 11th of February, 1:00 to 5:00, and you can 0:20:32.288 --> 0:20:35.768 get more information and download the flyer from the midsummer 0:20:35.768 --> 0:20:40.088 Victoria's Pride website. And we are asking people to book 0:20:40.088 --> 0:20:42.398 in because we know it can get booked out. And 0:20:42.398 --> 0:20:46.328 by contacting me for your booking, you can also request 0:20:46.328 --> 0:20:47.588 a guide as well. 0:20:47.588 --> 0:20:50.318 Certainly get in touch with Nail gun. Get in touch 0:20:50.318 --> 0:20:54.968 with Veritas. There's an absolute plethora of amazing tours to 0:20:54.968 --> 0:20:57.908 get involved with, so thank you very much, Neil Gunn, 0:20:57.908 --> 0:21:02.918 for creating better accessibility of the Carnival space. It's just 0:21:02.918 --> 0:21:05.498 been an absolute pleasure to catch up with you today 0:21:05.498 --> 0:21:06.758 to hear all about it. 0:21:06.878 --> 0:21:08.078 Thank you so much. 0:21:11.378 --> 0:21:14.618 And now here's my end of it with Lena. I 0:21:14.618 --> 0:21:18.308 began by asking Lena to give us a brief history 0:21:18.308 --> 0:21:21.278 of women with disabilities. Victoria. 0:21:21.458 --> 0:21:23.198 Our organization started in. 0:21:23.198 --> 0:21:26.528 1995, where a small group of women in the state 0:21:26.528 --> 0:21:29.438 came together, realizing that a lot of their needs weren't 0:21:29.438 --> 0:21:33.158 being advocated for, and they decided to do something and 0:21:33.158 --> 0:21:36.398 got incorporated. And we've been powering through ever since. We've 0:21:36.398 --> 0:21:39.068 got a staff base of about 50 members of staff 0:21:39.068 --> 0:21:43.088 now who work all across the state in community inclusion teams, 0:21:43.178 --> 0:21:46.148 workforce development teams that we work to make other workforces 0:21:46.148 --> 0:21:49.928 more accessible and inclusive for women with disabilities, as well 0:21:49.928 --> 0:21:53.558 as running leadership programs across the state, both in town 0:21:53.558 --> 0:21:56.168 and in regions far and wide across Victoria. 0:21:56.198 --> 0:21:58.268 Great. And can you tell us about some of your 0:21:58.268 --> 0:22:00.188 organization's recent wins? 0:22:00.218 --> 0:22:02.678 For sure. One that comes to mind, especially relevant to 0:22:02.678 --> 0:22:06.518 midsummer is a event that our youth experts ran. So 0:22:06.518 --> 0:22:08.888 that's a group of young women and non-binary people with 0:22:08.888 --> 0:22:12.158 disabilities who are aged between 18 and 25. They put 0:22:12.158 --> 0:22:14.378 on an event at the Pride Center last year called 0:22:14.378 --> 0:22:19.688 Prior to Conversations, and that celebrated the intersectionality of being 0:22:19.688 --> 0:22:23.198 queer and having disability. And it was a beautiful event 0:22:23.198 --> 0:22:26.138 and everybody just really enjoyed the day. And we've got 0:22:26.138 --> 0:22:29.318 a recording of it that people can look at online 0:22:29.318 --> 0:22:32.828 or listen to, and we've got promotional materials that were 0:22:32.828 --> 0:22:35.858 created for the event at our store here at the carnival. 0:22:35.888 --> 0:22:39.098 Okay. Now, Lena, we're gonna talk about yourself for a 0:22:39.098 --> 0:22:42.308 little bit. So just if you'll indulge us, what is 0:22:42.308 --> 0:22:46.058 your specific role at women with Disabilities Victoria for people 0:22:46.058 --> 0:22:46.508 out there? 0:22:46.508 --> 0:22:50.648 Yeah, thanks. So I manage Gender-Based Violence Research and Evaluation 0:22:50.648 --> 0:22:54.458 at Women with Disabilities Victoria. So I cover three different 0:22:54.458 --> 0:22:57.008 programs that are about prevention of gender based violence, as 0:22:57.008 --> 0:23:00.908 well as creating research links around those topics for the organization. 0:23:00.908 --> 0:23:04.988 So our programs provide training for workers who work across 0:23:04.988 --> 0:23:08.378 the state that are looking to prevent gender based violence 0:23:08.378 --> 0:23:12.338 in a systematic way, as well as creating more accessible, 0:23:12.338 --> 0:23:15.878 inclusive workforces. So making it possible so that women with 0:23:15.878 --> 0:23:19.208 disabilities can take part in those organizations as well. And 0:23:19.208 --> 0:23:23.078 to do that, we create resources, factsheets about preventing violence, 0:23:23.078 --> 0:23:26.558 about the specific forms of Gender-Based violence that women with 0:23:26.558 --> 0:23:30.038 disabilities experience, and what we can do to challenge ableism 0:23:30.038 --> 0:23:31.478 and sexism together. 0:23:31.808 --> 0:23:34.358 Awesome. And what does it mean to women living with 0:23:34.358 --> 0:23:37.238 disability to have a resource like that you've got? 0:23:37.298 --> 0:23:40.958 Well, as a woman with disabilities myself, I know it's empowering. Like, 0:23:40.958 --> 0:23:43.718 we can see our voices included in the resources that 0:23:43.718 --> 0:23:47.318 we make, and they are more accessible. They found in 0:23:47.318 --> 0:23:50.468 a wide variety of formats, and it means that it 0:23:50.468 --> 0:23:53.648 was seeing these resources around and seeing more people take 0:23:53.648 --> 0:23:56.168 them on and take on our training means that the 0:23:56.168 --> 0:23:58.808 world can be a little bit safer and more inclusive, 0:23:58.808 --> 0:24:01.118 and that we will be listened to and believed when 0:24:01.118 --> 0:24:04.688 we report violence or challenge what we experience when people 0:24:04.688 --> 0:24:08.648 are being ableist or are perpetrating violence against us. 0:24:09.128 --> 0:24:12.728 And Lena, what is your main motivation for being at 0:24:12.728 --> 0:24:16.088 Carnival today? You've spoken a bit about it there, but 0:24:16.088 --> 0:24:18.848 what sort of drives you to, you know, get involved 0:24:18.848 --> 0:24:19.988 with these sort of things? 0:24:20.168 --> 0:24:22.568 I guess my main motivation would be that we're here 0:24:22.568 --> 0:24:25.388 in the community. Women with disabilities are part of every 0:24:25.388 --> 0:24:29.318 community of Victoria, and we want to celebrate who we 0:24:29.318 --> 0:24:33.848 are loud, proud, queer, wild and we want to access 0:24:33.848 --> 0:24:37.388 all parts of queer spaces. I went to an event 0:24:37.388 --> 0:24:40.658 last year hosted by inclusive. Rainbow voices is a new 0:24:40.658 --> 0:24:45.758 organization specifically for queer people with disabilities and I. It 0:24:45.758 --> 0:24:48.698 really resonated to me how there's so many organizations or 0:24:48.698 --> 0:24:52.748 disability spaces that aren't super accessible for people who are 0:24:52.748 --> 0:24:55.808 also queer, and there's so many spaces in the queer 0:24:55.808 --> 0:25:00.158 community that aren't accessible for people with disabilities. And so 0:25:00.158 --> 0:25:04.058 just by taking up space and showing that we exist, 0:25:04.598 --> 0:25:09.188 and that we are creating resources that fit into that intersection, 0:25:09.308 --> 0:25:13.088 and that we are challenging the ableism that we experience together, 0:25:13.088 --> 0:25:17.048 and also learning more about who is in every community. 0:25:17.318 --> 0:25:19.328 That's really important to us. Yeah, yeah. 0:25:19.448 --> 0:25:22.208 And do you feel that queer community living with disability 0:25:22.208 --> 0:25:24.518 get the support they need from the wider community? I mean, 0:25:24.518 --> 0:25:27.128 you've touched on it there that you're providing resources for 0:25:27.128 --> 0:25:29.018 the community to be able to support. Do you feel 0:25:29.018 --> 0:25:30.758 there's still a lot of work to do in that space? 0:25:30.758 --> 0:25:33.668 That's absolutely more that our organization can do, that other 0:25:33.668 --> 0:25:36.398 organizations can do. And to me, the first thing that 0:25:36.398 --> 0:25:39.518 we can do for our community is by showing up, 0:25:39.518 --> 0:25:43.418 listening and taking on feedback about what can we do better. Yeah. 0:25:43.418 --> 0:25:46.538 So absolutely, there's more. And we're listening. 0:25:46.538 --> 0:25:47.318 Yeah. Awesome. 0:25:47.318 --> 0:25:51.308 And Lena, just finally, um, some exciting things to look 0:25:51.308 --> 0:25:55.178 forward to in 2024, I'm sure from a women with 0:25:55.178 --> 0:25:59.828 disabilities Victoria standpoint. So what is coming up in 2024 0:25:59.828 --> 0:26:01.238 for people to look forward to. 0:26:01.238 --> 0:26:04.718 Are so many things, um, some that would probably be 0:26:04.718 --> 0:26:08.348 of more interest to me than others. But the first 0:26:08.348 --> 0:26:10.358 couple of things that I can think of, we have 0:26:10.358 --> 0:26:14.518 the having. Conference. Members of the Community Inclusion team are 0:26:14.518 --> 0:26:16.258 taking part in that. I don't have the date off 0:26:16.258 --> 0:26:18.028 the top of my head, so I'm sorry. You'll have 0:26:18.118 --> 0:26:21.178 you'll have to Google it on your website. Um, and 0:26:21.178 --> 0:26:25.108 there's also a really wonderful, uh, International Women's Day event 0:26:25.108 --> 0:26:29.128 on March 6th, and our guest speaker is about to 0:26:29.128 --> 0:26:31.768 be announced, I believe. So grab your pen and paper 0:26:31.768 --> 0:26:34.198 and write that one down in your calendar. It's not 0:26:34.198 --> 0:26:35.038 to be missed. 0:26:35.068 --> 0:26:38.308 Lena, thank you so much. I've been speaking today with 0:26:38.308 --> 0:26:43.378 Lena molnar, the Prevention of Gender based Violence project coordinator 0:26:43.378 --> 0:26:47.638 at women with disabilities, Victoria. Lena, thank you so much 0:26:47.638 --> 0:26:49.618 for your time today. It was a pleasure to catch 0:26:49.618 --> 0:26:51.478 up with you and hear all about your work. 0:26:51.478 --> 0:26:53.608 Absolutely. My pleasure. Thanks for having us. 0:27:00.118 --> 0:27:02.878 And that's all the time we have for today on 0:27:02.878 --> 0:27:08.368 this special Mid-Summer Festival edition of Talking Vision. Talking vision 0:27:08.368 --> 0:27:12.388 is a production of Vision Australia Radio. Thanks to all 0:27:12.388 --> 0:27:16.228 involved with helping make the show happen and as always, 0:27:16.228 --> 0:27:19.318 we love your feedback and comments, so do feel free 0:27:19.318 --> 0:27:23.788 to get in touch on Talking Vision at Vision australia.org. 0:27:23.788 --> 0:27:29.188 That's talking vision all. One word at Vision australia.org. But 0:27:29.188 --> 0:27:32.698 until next week it's Sam Culley saying bye for now. 0:27:36.438 --> 0:27:40.488 You can contact Virgin Australia by phoning us anytime during 0:27:40.488 --> 0:27:49.368 business hours on one 308 40746. That's one 384 746 0:27:49.368 --> 0:27:54.588 or by visiting Vision australia.org that's Vision Australia call.