Full Transcript for Get connected with `Connect up`

to thank Nina, who will be hearing from shortly, who is a keen listener to the program, and a special hello and shout out to her. And if you are like Nina and you listen regularly and you would like to be part of the program, please get in touch. And I'd love to hear from you sometime. Anyway, now we will hand you over to Nina and Craig to tell us all about the Connect Up app and program. And this week we have two guests in the studio, and we are going to be talking about a new project, a new app, and a website called Connect Up. And the guests we have in the studio are Craig Thompson. Hi, Craig. 00:04:25 S3: Hi, Simon. 00:04:25 S2: And we also have Nina Marie Butler. Hi, Nina. Hello, Craig. I'll start with you. Can you tell us firstly, what the Connect Up app is and your involvement with it, please? 00:04:36 S3: The Connect up is an app which was designed, um, for people with disabilities to, um, connect socially with people close to them. Um, you know, people with disabilities and carers, I should say connect socially, um, and through physical activity. Um, and it also works through a web, you know, it's also a web based app as well. So, um, people who find it easier to use, use computers can access it there. And the idea is, is that we're trying to help people expand their social networks, but also participate in a little bit more activity as well. 00:05:09 S2: What was the impetus for getting this app and project up and running? What was the motivation to do that? 00:05:15 S3: We've started a long time ago with some discussions with some people at Carers Western Australia, um, in terms of some of the things that they'd seen in the people that they work with. Um, but the things that really drove it from, I suppose my perspective as a, as an occupational therapist and a researcher is, um, that social exclusion or being, you know, being socially isolated is, um, as bad a negative impact on your health as smoking. Um, and the same thing with, um, same thing with low levels of physical activity. So they're, they're really modifiable risk factors for um, poor health. Um, so we wanted to look for strategies for people to connect, um, so that they can hopefully be more, you know, have a greater social network. So they're not as socially isolated, but also build some, do some physical activity and like everyone, um, you know, we're all attached to our phones. Um, so we, we, and it's certainly an area of opportunity in terms of looking at how we can help people connect in that in that way. So lots of conversations with, with carers, WA and other people with disabilities and other and carers looking at what they wanted to see. 00:06:27 S2: So Craig Thomson, you're currently with Curtin University, is that right? 00:06:31 S3: That's right. Yeah. So I, I teach occupational therapy and I do research in the area of. I do a lot of research in co-design with with people with various disabilities. And that's why I'm involved in the connector project. 00:06:45

S2: And I believe there are, um, backing support from other universities across Australia. 00:06:50 S3: There are. So, um, we also have, um, in, in the project, we have researchers from University of Melbourne, Deakin University, University of Queensland and Swinburne University as well. I think um, it's a very broad network. Um, and we even have some involvement from um, some, some from the CSIRO to help us with, uh, the, you know, the development of the app and how we can utilise that, make most of that going forward. 00:07:20 S2: I've downloaded the app, I haven't done anything on it yet because I haven't gone through the process of trying to find people and so on. And I've looked at the website, it looks pretty good over my time. Even before apps and websites. There was newsletters. This idea that people with a disability are isolated, lonely and inactive is not new. And it's true for whatever reason, many people with a disability are not connected and are inactive. So what's the difference with this new Connect Up app and what are the main aims like? Connect up? It does sound like other things, and it does have a hint that it might be a not a dating app, but a social connection app, but your connection with a purpose would that be? 00:08:07 S3: I think connection with the purpose is most definitely true. It's the idea that you're trying to find people who have similar interests to you. So when you when you do go and actually set up your profile, you'll identify what types of activities you're interested in, um, how far you're interested to travel and move. Um, and then it will actually suggest some people who could be connections for you. But the major difference between this and, um, you know, some of the other apps or programs that might be out there is that, you know, while we started with an idea, it's been driven and, and designed and influenced by people with disabilities and carers as well. So if they told us that they wanted colours to change, if they wanted a different features, we would, um, to a point, we would make those changes so that it's an app for people with disabilities and carers as opposed to a very, an open app. And as we were going through the co-design process, we would ask, you know, why is why is this important? Um, and a lot of people were saying, well, the key thing is that it's authenticity about the information that's in the app. Um, so I, if, if I was using the app, I can go and identify some, you know, a place where I might go and meet people and actually, um, outline exactly what it's like to to visit there instead of what's actually on the web. What's on the website. Because sometimes it'll say, yes, we're, we're disabled friendly, we've got a, we've got a ramp, etc. but when you get there, you find that the ramp is stuck on the edge. You have to access it by, you know, going all the way around the edge of the building. Disabled toilets are hidden away and they can't be accessed. 00:09:52 S4: Or if they're like. 00:09:53 S2: This building we are broadcasting from today, there's a cafe downstairs that has an accessible toilet that's also used as a storeroom. 00:10:01 S3: And also it has a change table in there for changing your baby's nappy. So it's not really I mean, that's one of the other things that people wanted to be able to actually say, what is it really like? Because, you know, people with disabilities were telling us that they go to places and then they find that the reality is actually they say there's an Akron parking bay or there's several, but it's it's actually a long way from the entrance or it's actually not as accessible as what people like to portray it on the website so they can give the warts and all. This is what it really looks like and would be really like to visit. 00:10:34 S2: Now I'll bring in Nina. Nina, can you introduce yourself and how did you get involved with this project? 00:10:39 S5: Well, I'm Nina, um, I'm a disability advocate, and sometimes I am also a writer and a speaker. I joined the Connect Up project in, I think, February 2025, when they were actually beginning the build process of the app. I was actually introduced to the project by a friend who had a friend already involved. And so she said to me, I think this is something that would be right up your alley. And it was, um, so I went to the first meeting and wasn't thrown out. So I'm still involved. 00:11:23 S2: And just to explain the nature of your disabilities, uh, because you have a variety of different things going on. Nina? Can you tell the people what your main disabilities are, please? 00:11:33 S5: Yes. I am deaf, blind, and I've been deaf blind for about 17 years. Um, but my overall disability is called incontinentia pigmenti, which no one's ever heard of. It's very rare, but it involves general muscle weakness and nerve thing. So occasionally I twitch and that sort of stuff. It impairs my ability to walk great distances. So today I have my walking frame with me, which I lovingly call Cecilie. Um, but sometimes I also use a wheelchair. 00:12:10 S2: You're the second person I've met that's named their walker. I find that quite intriguing and fun. Um, there is a debate in the blindness circle about decorating and bedazzling and so on. White canes. It's a whole movement. And there's very gorgeous pretty women across the world who want to be glamorous and who are blind and have sparkly white canes. So, Nina, how do you find this app? Have you been using it? 00:12:39 S5: Um, yes, the app itself I don't use on the phone. I use it on the website. Um, because I use jaws software, screen reading software, and it's just easier for me to use it via the website than the app. It will do everything I need it to do, but mainly my interest is in finding out whether places I want to go are going to accommodate me, or looking for places that will accommodate me that I might not have been to before it. You know, it does take a little bit of effort sometimes to

organize yourself when you've got a disability to get somewhere, but also to psych yourself up to leave the house and then to get to a venue and find that after you've psyched yourself up, that it's not going to work for you and you've gone there for nothing is really disappointing and annoying. So that's my main interest. Um, but I also like the idea that I can put my $0.02 worth in as well and talk about how venues or activities are for me with my specific combination of disabilities, I might have, um, a different perspective that someone else hasn't had and vice versa. So we can learn from each other. 00:14:06 S2: Craig, I'll bring you in at this point. Can you tell us the main key features of the Connect Up app and project? 00:14:14 S3: I mean, you sort of mentioned it at the beginning, so I'm probably the one of the main features is the ability to connect between individuals. Um, so when you create your profile, you can, you can form connections and friendships. There is a text chat function where you can chat with with people you connect with. You can also do that within a group. Then. Then some of the other main features are there's a, there's a map which we can, we can add events and comments in the map. And then there's a calendar of events. And in that we, we can get information from various websites. You know, we scrape the web and, and it, it updates automatically of events that are in certain areas using disability sports groups and things like that. But also, you know, a user can create an event that they invite people to and organize that and they can have the choices of how those things are organized, but they can create that and put that on there. And as Nina was saying that people can for events and activities and places that users can rate, um, rate how accessible it really was, you know, it's not just giving it a star rating or it's five, five stars. It's it's giving ratings on the aspects of the venue, which is important, which were deemed important by our Co-designers. Mhm. Such as accessibility. And the other the other thing I should say is that, as Nina highlighted, that we. The other thing we pull into the into the app are things like where, believe it or not, there's, there's a database of where disabled parking bays are and disabled toilets and they get populated into the app. So, you know, there's some general information stuff which is there, which is populated into the app and you can turn some of those features on and off. People can change the colours and font size and those sorts of things to make it easier to read. Yeah. And as Nina said, the the website works much better than much better for a screen reader. Yeah. Um, so we've tried to include as many accessible features as we could within the, within the tight constraints of our budget. 00:16:18 S2: One of your colleagues who I spoke to on the phone about this when we were getting this set up, talked about that chat function and the the social aspect of it. Now, I was intrigued to find out about that because we do know that you this is aimed for people with disabilities. And some of those people are very vulnerable, especially if they are already isolated and really hanging out to meet new people. I believe there are safeguards within this, especially regarding the chat process and the connecting process, like it's monitored and so on. 00:16:50 S3: I mean, within it, there's, um, one, we set up the, um, the guidelines in terms of what, what's expected in terms of the members of connect up in terms of what, um, what behaviours are promoting, which is, I suppose you know, all about inclusion and um, being kind etc. to each other, you know, we, we do need someone to let us know that there's some been some, um, something that was inappropriate. Um, and then they can let us know and what happens is that we then go and investigate it, but initially that suspend the other person's account, and then we will investigate and see what's see what's actually happened. And because it's a, it's a text function, we can actually, um, go back and review all of those things in terms of what was said and actually follow up from there. You know, we had some co-designers that wanted either a voice, voice chat or a video chat. Um, and if we were to use that, it would mean actually we'd have less opportunity to go and investigate what actually happened because those, those voice or video chats disappear and we can't check what's happened, what was actually said. So if it was said that someone was being inappropriate, you know, we can actually remove them from the app. And so that they don't, you know, continue to do that. Um, because that was the safety quite rightly, is one of the most important aspects that people ask for within this. And we're going to do the best we can, and we're going to continue to work on that because this is the first iteration of the app. And we'll no doubt find, um, new things that we need to do, whether it be related to safety or other features as well. So we'll see where it goes with that. 00:18:27 S1: You're listening to In Plain Sight on Vision Australia Radio with Simon Cheung and me, Andrew Williams. Our guests this week are Nina Butler, a disability advocate and design consultant for Connect Up, which is a new app and online platform co-designed for people with disability and carers. And Craig Thomson, researcher at Curtin Uni and co-creator of Connect Up. And now it's back to Simon, Craig and Nina. 00:18:53 S2: So, Nina, you spoke earlier about a friend recommended you going on to this co-design panel and process for this particular project, because it was right up your alley. So give us a little bit of background. Nina, I've looked you up on the internet. You have a bit of a presence there. You have a blog, you have other things going on. Can tell us a little bit about yourself and some of the other interests that you have. 00:19:15 S5: Well, I'm, um, funny looking and because I'm funny

looking, people make assumptions about my capabilities, and because of that, I have a bit of a fire in my belly to prove that what someone looks like or how someone presents isn't necessarily gospel. So yes, I do have a blog. It's called Inner Musings of a Funny Looking Kid, and I write about my experiences as a funny looking person in a normal person's world. So, you know, highlighting discrimination or inappropriate contact, that sort of stuff. And I like to be part of projects like this because it allows people with disabilities to not only meet each other and make friends and, you know, compare notes and know that they're not the only person experiencing discrimination or isolation or anything like that. But they're also it gives us the ability to be out and about. And I think the more a person with a disability, any kind of disability is out and about, the more quote unquote normalized it is and the less of a novelty we become. And I think the novelty aspect of it is what drives the discrimination or the unwanted help or unwanted attention. So I think if we can, quote unquote, normalize being out and about and accessing the community and, um, make it more accepted that if there's a ramp or if there's, you know, an accessible anything, it benefits everybody. It's not just something that you've put there so that you can be woke and I can join in if I want to. It's something that. It means that I'm included and I'm thought of. And I'm a normal person, just like everybody else. You know, I'm respected in the same way that someone else is. 00:21:35 S2: With your experience using the website for Connect Up, you say you're a Jaws user. We've only just met today. Your vision is quite low. How do you find the website? In regards to accessibility. Ah. I often find those interactive maps to be quite tricky and not as interactive as they're designed to be. With my vision and the method, I use a computer. And so can you tell us your your experience, not just with the map, but with the website itself? 00:22:07 S5: Well, the interactive map is probably the least accessible thing because by design a map is a visual tool, but you can go from pin to pin. It'll tell you there's a pin here, so you can go and have a look and see what that pin is. You can um, it's easy to with the tab or the, the arrows up and down, and it'll take you from pin to pin. It'll tell you that there is um, something there to look at. So then it will open it and you can read any reviews or you can read what that specific venue lists as their facilities or their accessibility accommodations and gives you the option as well to leave a bit of a review about what your experience was. 00:23:00 S2: Craig, did people from the back end review the reviews? Because that is, uh, problematic sometimes, isn't it, when people might we hear about that give a bad review about a restaurant just because they had one bad day and didn't like it? Does it ever get reviewed? 00:23:17 S3: I suppose it's down to the users in a way to to flag that a review is um, say inappropriate. Um, and there's an opportunity to flag that up and we can, we can remove that. One thing I do want to stress is that, for example, you're giving you the description a little bit of how she uses her, the screen reader to me as a researcher and trying to make this as user friendly as possible. That's absolutely invaluable. Yes. Um, because, you know, I while my vision is not perfect, but I can correct it with glasses so I can, so I can manage that. I wouldn't know what, what Nina's experience was. Um, so yeah, I've got to say every single time we were meeting as a researcher, we were learning heaps and heaps of information about what people wanted, what worked, what didn't work, and, um, all sorts of different workarounds that people might have had to do in the past. But hopefully we don't have to do in the future. 00:24:10 S2: Craig so I'll just ask you to explain some of the how it works. So like I logged in, I used all my real names and birth dates and everything like that. Tried to be a good person. I don't know if I put in that I'm vision impaired. I did choose some recreational activities, leisure activities that I like, including dancing. So when I logged on to the website again, after I did all that sign up process, it came up with a recommendation near me for ballroom fit. Now, is that because Ballroom Fit is the only registered dance troupe? Or somehow, does the app know that I'm visually impaired because it's reading my data? How did that actually work? 00:24:50 S3: No. So I mean, it, um, looked at what you flagged as your interests. Uh, it's not, we're not specified based on disability. And in fact, that was one of the things that the, the co-design group wanted. They didn't want people to be defined by their disability. They wanted to be connecting with people because they had similar interests. Um, so ballroom fit is an organization, um, which is registered with registered in connect up as well. So the other groups of people that can register are organizations. Now they effectively apply to go in and we vet them and allow them into the system as as appropriate. So it will have just matched up. It said what organisations run some. 00:25:33 S2: Dancing. 00:25:34 S3: Dancing for for that are accessible that um, you know, cater for people, um, with various disabilities and you know, so. Darryl. Darryl Davenport from Ballroom fit. Hello. 00:25:46 S2: Thanks for recommending this conversation. 00:25:48 S3: I mean, Darryl's actually been a great supporter of, of us in terms of, um, joining in when, you know, we have a meeting every year where we invite every, all the researchers from around the country who invite, um, people with disabilities and carers to the co-designers to come and organisations as well. So Darryl's come in and given us again, some amazing pieces of advice about what we can do and how we can set it up to develop the app. Um, to answer the original

question, it's not hasn't somehow picked up that you're vision impaired. It's not we don't have, we don't, there's no, um big brother trying to work those things out. It's just gone off. What were your preferences? 00:26:26 S4: Okay. 00:26:26 S2: So can I ask how do people, individuals and how do groups register become part of this, especially groups? 00:26:35 S3: Well, they either go to the they go to the website, which is ww.connect.org.au. Um, and they scroll down and there's a button there that says um, join, um, and it will ask you which category you're falling into and you'll fill in your profile details. If you're a regular person like you, me, Nina, you know, we, we put in our details of us personally and, um, put a photo in there. Um, and these photos in our age were actually some of the safety features people wanted. So they see that it's a real individual. This is who, who I'm meeting in terms of their age and then sends you an email to then verify your account. Then you're set up as an individual. The organization's very similar apart from it then goes through, you know, gets doesn't get activated immediately get gets sent through to um, Dom who is the, you know, will go and review that. And um, if, if the person's from a real organization that really exists that really is working for people with disabilities or for carers. She'll activate that. Um, and then they can then start, you know, putting things into the app. That's what the, the organisation's there to effectively say, uh, like Darryl Baldwin would say, I'm running a certain event on in, you know, in High Wycombe and it's at this time you can come along. 00:27:54 S2: Nina, when you after you got through the co-design process. And I really like the everything I've read about the co-design process and what you've told us so far. What were some of the interests and hobbies and leisure activities that you put down as your your things that you like to do? 00:28:09 S5: Um, well, dancing was one of mine. Um, I think lots of us said dancing, but that was on my list. Also, at the time I was training for the city to surf, so I had walking as well, and my interest was walking tracks specifically. So not necessarily in the neighborhood or even in a stadium, but, you know, at a park. And I am a regular gym user and a regular Pilates. 00:28:44 S4: So how did. 00:28:44 S2: You find this in regards to doing something like the gym, for instance, and using this type of system, rather than hiring your own support worker to accompany you to the gym? Can you compare and contrast those types? Two little experiences? 00:28:58 S5: Well, with me, I need to have because of my blindness, but also my mobility issues. I need to have a support worker or a companion with me when I'm out in a new place. So regardless of whether I meet someone on the app to do it with, I would also have to take somebody with me. But it is, I think, comforting to know that when you meet somebody on the app and you connect with them and, um, find that you have a mutual interest in a specific activity or sport that they are already open to the idea that your body might move in a different way and they might need to make accommodations for you. So for me personally, it is a bit of a. 00:29:56 S2: Extra bonus. 00:29:57 S5: A bit of a bonus because it means that, you know, there's lots of activities that I would love to do, but I'm a bit slower at doing them. 00:30:06 S2: I think what. 00:30:06 S4: You've highlighted. 00:30:07 S2: There, Nina is you can have a paid support worker with you who understands your physical needs and your emotional needs and whatever you need support for. But then you can also then go along for someone who has an expertise in the activity. So just saying that we need to finish up now. Nina, could you leave us with something that you'd like to tell people about yourself and this app, please? 00:30:31 S5: Um, well, I really like connect up because as I say, it gives me, um, the option of the ability, I should say, to connect with other people, but to do physical activities that I might not have thought were possible. Um, and the confidence to do them because I know that even if I'm meeting with another person with disability who has a different disability to mine, they may, you know, be more open to waiting a few minutes for me to catch up to them, etc.. So I would definitely recommend that everyone gets on board and, you know, sign up and have a go. You know, you can use it as much or as little as you want. And it's, it's not a, it's not a confronting in your face app. So, you know, you can take it at your own pace, which is what I like. 00:31:24 S2: Thanks, Nina. Craig, something you like to finish up with in regards to the connect app and project for me? 00:31:31 S3: You know, one of the things I'm passionate about is people being able to do the things that they want to do regardless, um, of, you know what that is, no one should have a, you know, society putting limits, limits on them. Um, from my perspective, it would be amazing if connect up allows people to meet new people and, and find new things. If it helps even one person's enough. But what I, you know, what I'm hoping for is that we can, um, gradually, you know, we've rolled this out in WA and we're aiming to roll it out through in other states and hopefully that we'll get can be used by people with disabilities by and care and carers so that they can actually connect and um, you know, get something out of it. Um, any small numbers is great, but um, you know, I think as Nina said, if people, you know, give it a go and explore it, if it's, if it's not for you, then that's fine. But I think just, you know, taking that opportunity, that's what I hope people get out of this. 00:32:30 S2: Okay. So that's all we have time for. I really recommend people having a look at this website and app, uh, and the connect up app. We will, if you're listening to the podcast, we will put the details of that on our show notes in our podcast description. And if you're on the radio and you didn't catch all that, contact us here at Vision Australia Radio Perth and our In Plain Sight email, which is in plain sight at vision australia.org. And we can find out more. So I'd like to thank Craig Thompson from Curtin University, who's representing the Connect Up project. And Nina Butler, and thank you both for coming in and telling us all about this wonderful project. Thanks a lot. Thanks a lot, guys. And that was really great. Thanks for joining us once again on In Plain Sight and Vision Australia Radio. Look forward to speaking to you next time. Bye for now. Cheers. 00:33:31 S1: That concludes in Plain Sight for this week. Join us at the same time next week on Vision Australia Radio, VA radio Digital and online at VA radio.org. You can also listen on demand by searching for In Plain Sight by Vision Australia Radio. Wherever you get your podcasts, or ask your smart device to play in Plain Sight by Vision Australia Radio. Thanks for listening. 00:33:55 S2: Thank you.