Disability Dialogue - Belonging

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Elly Desmarchelier 1:05
Hello and welcome. My name is Ellie Desmarchelier. I'm a 32 year old woman. I have got very bright copper hair, and I'm wearing a navy jacket. I'm a determined disability rights campaigner who has been involved with the Disability Dialogue for a number of years, and I get the pleasure to welcome you to our first open dialogue of 2025 - an initiative of the Disability Dialogue. The Disability Dialogue is a project to promote inclusive, collaborative disability conversations. 

Before we start, I want to give a shout out to our partners: DANA, inclusion Australia, the Melbourne Disability Institute and Alliance 20, and a shout out to Powerd, Community Broadcasting Association of Australia and Vision Australia. This will be a discussion about making friendships and building community. It is the first of three discussions we are having around the idea of belonging and community. We have chosen to focus on this topic because when we have asked our community what supports are most important to them, it was the idea of personal connection that kept coming up. 

So we thought this was something we needed to understand better. Because after all, a sense of belonging is core to a great life. I want to begin by acknowledging the traditional custodians of the land on which we gather. I am on the land of the Yuggera and Turrabul people. I recognise their continued connection to the land and waters of this beautiful place, and acknowledge that they never ceded sovereignty. I respect all elders and ancestors and any First Nations people here today. 

For those who have not been to one of our events before, welcome! I'm so excited to have newcomers - that's really exciting. We have designed these events to be inclusive, accessible, collaborative, respectful, and, most importantly, fun. We will also be posting the full event to YouTube, so if you're watching it later, you can still put your ideas in by using the comment section in YouTube. We'll also be using Zoom features today, so please feel free to introduce yourself in the chat and ask any questions in the Q and A feature. 

So we have a great playlist for how things are going to go today. We are going to start by talking about the ideas of friendship and community with our panellists. I love our panellists. Firstly, Emma Myers - a screenwriter, editor, journalist and disability advocate based in Canberra. She is Powerd's inaugural Disability Rights and Political Reporter, and is passionate about educating audiences about the intersection of womanhood, sexuality and disability through the media. And Todd Winther is a self described political nerd - me too, Todd! - with an academic background in political leadership, party politics and disability policy, who has taught these subjects at multiple universities. Todd, spends every day of his life fighting for political and human rights of people with disabilities. 

We're then going to hear from Dr Sally Robinson and Kim Callahan about research into the benefit of belonging and friendship. I'll introduce them more a little later on. And finally, we're going to look at a program that has been developed to give young people the chance to build connections. I love this project. It's about leadership and advocacy with Saranna Schultz and Megan Lampa. But let's get going. We're not messing around here. Let's start with our panel and an icebreaker question: I want to ask each of you, do you have a best friend? And if so, where did you meet? Emma, have you got a best bud?

Emma Myers 5:44
I think I do. We. We only met... feels like a lifetime ago, but we really only met on New Year's Eve last year and through mutual acquaintance and I've never... I've never felt like I do about this person. We can talk for hours on end without drawing a breath and... yeah, it's really refreshing because they... don't care about my disability, which is amazing.

Elly Desmarchelier 6:26
Awesome. What about you? Tom BFFs with anyone?

Todd Winther 6:30
Yeah, my closest friend I met around ten years ago, as is the case when you work in the disability sector. We work... we met at a meeting with a politician, actually, to discuss funding for more home and living in the NDIS. And that the interesting thing about our friendship is that she lives in a completely different city, so the majority of our friendship is online communication.

Elly Desmarchelier 7:01
I'm the same Todd - my BFF is.... I'll give a shout out to Elle from DANA, and like, I've only ever met Elle once in real life, and that was only this year, but I think we've been talking on the phone for like, five years now... and I think that's a way a lot of disability friendships are - like you don't actually meet in person very often, but we're always talking on the phone... and it doesn't matter what your help is like, you can always have a great phone conversation. And... yeah, but you know, it just so happens that you don't meet up in person that often, and... but a follow-up to both of you, kind of on the back of what I just said around... doesn't matter what your health is like... what are some of the things you... that get in the way of maintaining friendships for you, Todd?

Todd Winther 8:01
Mainly it's just logistics - personal care issues, like we're getting up to Easter weekend as we're doing this webinar, and I'm seeing my family on the weekend, and we're going out to eat at a restaurant. Knowing that event is happening on the weekend, I have to prepare my body and organise transport and do all those things three or four days in advance - many of which people without disabilities wouldn't recognise as extra work, it would just be taken for granted. And a lot of those things take preparation, both physically and mentally, and lots of preparation with logistics. So that really is... disadvantageous for me to... leave the house and be part of the community on a regular basis.

Elly Desmarchelier 8:58
Yeah, transport's a big one for me, I agree there - which is interesting... given our lineup, and we'll talk about it a little later on. But Emma, what about you - what are the things that get in the way of maintaining friendships for you?

Emma Myers 9:14
I guess... I guess a bit of internalised ableism on my part, I... but also a lack of understanding on... friends who don't have a disability. It's a case of, do people really want to hang out, or are they just inviting me out because they feel some sort of pity for me, or... just a range of things. But I think it comes down to... not giving in to that internalised ableism and just going with the flow when... people do ask you to attend things. But...

Elly Desmarchelier 10:11
But as I said, Emma, either way, they're damn lucky to have you.

Emma Myers 10:15
Yeah... I know. And they know it too. I'm pretty cool...

Elly Desmarchelier 10:23
(LAUGHS) You're pretty damn awesome, that's for sure. I'm lucky to call you a friend. My friend. I count you as a friend.

Emma Myers 10:27
Oh yeah - so I was just going to say, I will say before... working in the disability sector, I didn't really know anyone with a disability who I got along well with, so it's just been a breath of fresh air to actually say, Man, I love all of our advocates out there in the world. They're all incredible.

Elly Desmarchelier 10:56
Yeah, I have to say, people with disability make the best friends. That's my controversial opinion for the day, my provocation. Now... before the event, we asked people to feed in their experiences in a survey, and I just want to share some of the responses that we got. We asked two questions at the very beginning... the first one was, I have a group of friends I can rely on. 23% said No, 77% said Yes. And we also asked them, if I have a problem, I have a friend that I can call. 20% said No, 80% said Yes. To both of you, do these figures ring true to you? I guess it looks positive from the outset, but there's still a quarter of people who say they don't have a group of friends they can rely on, which is not what we want to see in our community. So that did stand out to me. Todd, what do you think? What does the... what do these numbers say to you?

Todd Winther 12:08
Two things here... I know the survey incorporated experiences from able-bodied people as well as those with a disability. I'd be interested in, to see the stats for people who filled in the survey that exclusively had a disability. But another thing is, as well, different people define friends in a different way, particularly in the internet age. So we have this concept of Facebook friends or Instagram or Tiktok followers... it would be interesting to drill down and find how we define friends. And if you're a person with a disability, those survey results aren't surprising, because I think it demonstrates, although we've had a continuing conversation about disability in this...disability inclusion in this country for more than a generation, it goes to show that we've got a long way to go in fostering and building social connections and breaking stereotypes about what people with disabilities can do in the mainstream community?

Elly Desmarchelier 13:22
Yeah, and can I just break down a big myth that I find people with disability believe in, which is that social media followers equals friends. I have, like, almost daily, someone with a disability message me and go, I wish we could be friends, but you must have so many friends - like, given your social media following, and I'm like, I can count the number of friends I have on one hand. Like, social media following does not equal friends... and so, like, just because somebody has a large social media following does not mean they have a lot of friends, that's not a translational thing. What about you, Emma, what do you think about those figures that we just saw up on the screen?

Emma Myers 14:12
Well, to echo Todd's comments, I'd be really interested to see the stats of just the participants with a disability who answered those questions. Because I think the question, Do you have a group of friends that you can rely on? - I mean, what classifies as a group? Do you mean, does it mean, do you have five people that you can turn to... like a panel of people you can turn to to say, to ask them for advice or anything? But... in the case of... like you said... I can count on one hand the amount of people that I can turn to if I need someone to talk to - and I'm perfectly okay with that, I'd rather have a small network of intimate relationships than 500 virtual friends, because... I think you get more genuine interactions.

Elly Desmarchelier 15:25
Well, when we asked you to share something about a close friend, we got some beautiful answers. Here are just a few on slides. One quote was... My closest friend I have met at school or in the workplace, one of my closest friends to someone else is of a similar age and shares similar interests to me. We've been friends for decades and have supported each other through good and bad times over the years. She's like family to me, and I'm very lucky to have her.

I wanted to also acknowledge those people who shared their struggles to find friendship. We're here to talk about this together, and some people said they didn't have a friend, and I want to acknowledge those people - we, I've had times in my life where, you know, I haven't had a friend, and that's a really hard experience, so... that was definitely something that came through in the survey. So if you said that, you're not alone. When we asked people, What... does friendship mean to you? We got some beautiful responses. I wish I could share them all. A few key ones worth sharing on the slides... 

Someone you can lean on in tough times, as well as good ones... Someone that you can share stories, support and expect honesty from.... Someone just said, Everything... And then the final quote is... My friendship is so important to me as it gives me a sense of belonging. It is really nice to know that I have someone that I can talk to about anything and that they will never judge me. And... we also asked, Do you need support to make new friends? And 34% said Yes, or sometimes, which is interesting. There's like, an idea out there that people with disability always need support to do something. Only 34% said Yes, or sometimes, Todd, do you just want to quickly talk to that?

Todd Winther 17:36
Yeah. I mean, with the prevalence of the online communication we were talking about earlier, we've got this stage of... it's really easy to make... superficial connections. The challenge is to go somewhat deeper and find common interest, both within the disability sphere as well as outside the disability sphere. If I put my political hat on for a moment, this is one of the steps that basically supports the fact that the NDIS is doing its job by promoting social and community participation - but it's also reinforcing the idea that the job is not done and policy itself can't provide the full solution, and we need to continue to work towards full integration with people with disabilities in society so they can feel comfortable being seen and heard.

Elly Desmarchelier 18:43
Finally, we followed up with, What kind of support would help? And it wasn't actually, you know, support workers and...that kind of thing, it was about.... I did use about where to find people with similar interests, more information about social events or clubs, to meet new friends... free and accessible venues to meet offline, which I think is really interesting. We know that the level of poverty amongst people with disability is much higher than the rest of the population, so somewhere free to meet offline is really important. And then that idea of confidence, that I... will be welcome in a new group, a belief that I have something to contribute - so that... inner self belief. 

So those were your survey responses - thank you to everyone who took part. Now I'd like Sally and Tim to... pop up on my screen to talk about their research into loneliness. Welcome, both of you. Sally Robinson is a Professor of Disability and Community Inclusion at Flinders University. She does research with children, young people and adults with disability about what helps them feel safe, well and happy at difficult times in their lives. She also works with government and organisations about how to listen to things that matter to disabled people. Tim Callahan is a community researcher at Flinders Disability and Community Inclusion. He brings together his experience of intellectual disability and his interest in understanding and sharing information. 

Sally and Tim, do you want to get start by giving us a short visual description of yourselves?

Sally Robinson 20:38
Thank you Elly, and hi everybody. Tim and I are sitting here together in my room at Flinders. We've got nice, bright artworks on the walls... and a table in the background. I'm a woman in my 50s. I have red hair - not quite as vibrant as Elly's - and glasses. Tim, do you want to describe yourself?

Tim Cahalan 21:02
I'm Tim, I'm in my late 30s. I'm... also a self professed political nerd, and I like to read books and go to cinemas, and I'm wearing a dark T-shirt with the [?] logo on it, and I have light brown hair.

Elly Desmarchelier 21:23
Wonderful. Well, why don't you two get started on your presentation?

Sally Robinson 21:27
Thanks very much, Elly. Hi everybody out there... thank you very much for inviting us to speak today. Tim and I are going to talk about some research that we did that was shaped and guided by people with intellectual disability - and while both of us are disabled people, it's really important to us that we're talking to you about this work, because it brings the voices and the perspectives of people who otherwise might not be speaking at today's webinar into the room.

Tim Cahalan 22:05
So the people who worked on the project was Sally Robertson, here who headed up, and Jan [Idol], who... was living in Adelaide at the time, but now lives in Sydney, works at.. is it the University of Sydney?

Sally Robinson 22:23
Yeah, anyway... New South Wales...

Tim Cahalan 22:24
... And myself, and... we will meet with a... focus group every... I think was it, how often will we meet with them?

Sally Robinson 22:37
Oh, quite often...

Tim Cahalan 22:38
Yeah, quite often, through the project.

Sally Robinson 22:40
So they'll be brought to life in the video that we'll show you just now, which talks about how the project was really shaped and guided by people with intellectual disability all the way through. We're... the video goes for a bit longer, but we're just going to show you a snippet of it now. Thanks.

(Video) 22:58
(Sally:) I was really keen to build a project that was... generated from the priorities of people with intellectual disability. So we went and consulted with organisations in South Australia that involved people with intellectual disability in their governance, in their employment, in their advisory structures, and loneliness came out as a priority. 

(Ian Cummins:) We've been lonely all your life... so yeah I don't ever talk to anybody at all. Best part about doing this project, the ideas we got from us, you that's why other people won't call... lot of people disability won't talk about loneliness. On this project, yeah, they open up. Yeah. Normally see that in the disability area. They normally keep it to themself. 

(Sally:) Purple Orange really got on board very strongly. We approached them first of all to see whether they were interested in asking people to get involved in an advisory group and helping us with recruitment for the project. But they really jumped feet-in, and they were really integral to the running of the project, people told us that we shouldn't be sitting and dwelling in What does this experience of loneliness look and feel like, but we should be focusing on What helps to resolve it. 

(Libby Crawford:) I like to help make people not feel lonely, that's my passion... help make people not feel lonely. Talk to people, get in touch with them, and... talk about why they are lonely, with them. 

(Sally:) We went into the project knowing that loneliness was a problem. There had been very little work that asked people with intellectual disability what their priorities for change were. It was really important that our focus was on what's going to improve the situation - but also on making sure that we shared the message accessibly. One of the really great impacts of this project has been being able to see how the results resonated with people with intellectual disability who listened to the presentations of the reports. 

As a result of the research, people who were members of Our Voice and members of Purple Orange talked together about what they wanted to do about the work. They decided to make videos about their experiences and share them more broadly with other people with intellectual disability. So to see that grassroots impact was incredibly rewarding. (Ian:) We need our voice out there... and I look at it all, I'm part of it... more people that, people with disabilities out there, so that...they'llopen up. That's the best part about it.

Sally Robinson 25:53
So that gives you a little bit of a flavor of how important people were to the way that we did the work. And Tim and I just want to talk to you a little bit about what people told us in the research and what was most important to them. So if we could just put up the slides, just to guide us for a few minutes in that... so we can talk to you about what we learnt. There were four areas which affected how people felt included or excluded, you know, what sort of sense of belonging people had. 

And they were about... interaction, participation, personal security and the attitudes that other people had. So the first one, interaction, really is about... you know, interactions are the things that help all of us - because they help... the interactions we have with other people help to grow trust and help build social connections with other people. And there's a lot of research that shows that when you have positive interactions, they really help us to grow more confident and contribute to our feelings of well-being. And some people talked about positive interactions that they had, but people talked about a lot of times when they had interactions in their communities and workplaces... and also in the homes that weren't so positive. 

And everybody in this research, unfortunately, talked about times when they felt lonely because they were disregarded or disrespected or overlooked - and people felt because of that, that they were treated as not having value - and that, of course, really affected people's confidence. And people didn't just sit with those feelings, they did things about this. And so the things that people did to counter those feelings, in... to do something about those bad feelings... they talked about how they really valued the encounters that they had in places that felt safe for them. 

For some people, there were things like a favourite cafe that they went to, or spaces that they went to a lot that felt safe, they might be family members' home, or a workplace that they really valued... and for people who'd had negative experiences, friendships were incredibly important. So the small... group of friendships that people might have, or one friend that the person might have, mattered a real lot. They were very, important. So the next part, about participation - the things that people did - and you know, how people got out and about in their different worlds and communities - were a really important pathway into how people were heard and how people took part in their worlds. And people in our research talked about how going to familiar places helped them to feel confident. 

And they talked about the feelings of anxiety that, of course, everyone has when they go to new places and meet new people. But people talked about sometimes how that level of anxiety stopped them from going to new places and meeting new people. People really liked being invited to events and being invited to new places. It was important to be invited to new things... and having things that you like to do, and a way to do them, really helped. So having a pathway into new places and meeting new people was really important. 

Some people, of course, needed support to be part of things - and having support that was provided in a way that worked for you was a real key in being able to bridge the anxiety that you feel about going somewhere new and getting... moving from something being new and making you feel anxious, towards it being something that's familiar, and something that helps you feel part of part of things. 

And so the things that people did that helped them get from something being new and anxiety-provoking to being something enjoyable and... that helped them be involved in things, were building on interests that they had, joining groups where they didn't feel so on the spot, and making trends through that, the kind of activities and the interests that they had. 

The third one, about personal security, was... a really tricky area - and I guess this is probably an important point to say to people, we're aware that lots of people have these issues. It's a sensitive area, and please do look after yourself as you're listening to this part of the presentation. Lots of people talked about feeling left out and feeling excluded and lonely because of the way that other people acted towards them, and the sorts of things that other people said and did. When people had been treated badly, it really affected their confidence, and it made people feel unwelcome in their communities because of this. 

It was hard for people to talk about this... and we talked a lot in the research about how this was down to other people, often - but it wasn't other people who were bearing the consequences... of the sort of behaviour that other people had. And the things that people did when these kinds of things had happened that made them feel excluded and feel lonely, was to focus on the trusting relationships that they had. 

And it took a long time for people to build trusting relationships and when people's relationships were damaged, it took a long time to recover from that - and it was a really important thing to find out about research - that not everybody had people who they trusted in their lives, and when people didn't have people who they could trust in their lives, or those trusting relationships, that was really difficult thing. 

And then the last one was about attitudes. And people talked about their own attitudes, and the way that they felt things like being underestimated by other people or not well understood by other people. People talked about... like we heard earlier, people talking about how other people with disability make the best friends because they understood what was going on. People had, you know, really... didn't tend to underestimate in the same way as people without disabilities might. 

And then other people's attitudes - especially for people who received a lot of support from paid workers. Poor attitudes of paid workers affected the quality of support that people received, and that really affected them. And not being taken seriously or not feeling listened to, obviously affected people and how close they felt, or how well-heard they felt by workers and by their families. And when people were faced by negative attitudes from other people, it was hard to find ways around that. So people felt frustrated. 

Some people had a very proactive approach, a very forward looking approach to that, and they did education themselves about the ways to turn around attitudes - which we thought was amazing... but it was very frustrating. So, just sort of coming towards the back end of our talk today, what does this mean, then, for improving loneliness, for doing something about it? People in our study, our research, said that there were two main things that really helped them avoid feeling lonely and helped give them a sense of belonging and inclusion. 

The first one was having a purpose, and the second one was feeling valued and respected - and sitting alongside those things that helped people personally, people had shared priorities for the wider community to change. People didn't see that it was then that had to change, of course, not. The wider community really needs to be more friendly and welcoming on a personal level, but also at a general community level, to recognise and to respect people with intellectual disability as equal people with equal rights. I'm going to turn to Tim now to finish off, because people had really clear advice, didn't they? Three bits of advice?

Tim Cahalan 34:16
Yeah, their advice for everyone was to treat everyone as equal, listen and communicate clearly, change attitudes, see the person not the disability, be friendly, support us to be included... and...

Sally Robinson 34:42
And then there was advice for organisations, yeah, to make changes.

Tim Cahalan 34:46
And their aadvice was to... for disability-ready places, to be accessible always. People with intellectual disabilities can have a say, support human rights, connect to communities and support people at work.

Sally Robinson 35:09
And then finally, people with intellectual disability had advice for other people who might be in the same position...

Tim Cahalan 35:17
Yeah, to speak up, don't give up... get involved with self advocacy... find and share information and share an interest or a hobby.

Sally Robinson 35:31
And then... I'm sorry this slide is a bit busy, but I didn't know if people might want to take a screenshot of that or to come back to it later... but you can find the videos about loneliness that our voice members made. There's a link there. The videos are fantastic that people responded to after they've been involved in this work. There's an easy-read paper about this research, and then there's an academic article as well that says the same thing, again, in $15 words. I'd look at the easy-read if I was you. That, sort of, is the end of our presentation. We might hand back to you, Elly, and just say thank you very much.

Elly Desmarchelier 36:15
Thank you, both of you. That was fantastic. I think we've put the wording from that last slide into the Chat. So if you're looking for the links... that we were just talking about, they're in the Chat. That was such a wonderful presentation, I have some questions for you if you're happy to take some questions, but I might bring back Todd and Emma as well, who can feed into some of these questions. But my first question is to Sally and Tim.... if, given your research, if you could just scrap all supports and services and start from the beginning... and design them to best promote friendship and community, based on what people with intellectual disability told you, how would you design them?

Sally Robinson 37:09
You got ideas? What do you want me to start?

Tim Cahalan 37:12
Ah, you can start.

Sally Robinson 37:13
And you you chip in?

Tim Cahalan 37:14
Yeah.

Sally Robinson 37:16
I think what people really told us often was that they wanted anybody who provided support for them to be a bridge for them into relationships that they really wanted - rather than to try to be the relationship. People struggled sometimes with support workers who would... say, Let's go and do this activity together, or Let's go and go to the movies together. Or, you know, Let's go and do the shopping together, or whatever. And... supports, which... where workers didn't understand that their role was to facilitate or make the link for somebody into what they wanted, which was really genuine connections to other people who were in it, because they really wanted the friendship relationship. 

And so if I was, if I had a magic wand and I was redesigning, I would redesign in a way that... organisations and workers really understood what it meant to make a connection, and to build a bridge into what people actually really want, to feel a sense of belonging to something bigger. What do you reckon, Tim?

Tim Cahalan 38:33
Yeah, I think.... that sounds about right.

Sally Robinson 38:36
(LAUGHS) You got the easy end of it. Is there anything that you would do differently?

Tim Cahalan 38:40
I... can't think of anything.

Sally Robinson 38:45
We'll come back to you.

Tim Cahalan 38:46
Yeah.

Elly Desmarchelier 38:47
I wanted to ask... Emma and Todd, what were your main takeaways? So, Todd?

Todd Winther 38:55
Well, much of the research backed up what I think we all feel about seeing beyond the disability, being part of the community. We're still amongst the first generation of people with disabilities that haven't been segregated and marginalised historically, and we're in this interesting phase where we're sort of heading in the right direction, but the evolution hasn't been fully complete. And a point that I think is interesting is that the NDIS was designed as a social and community policy, but is purely seen by external people, particularly the media, as an economic program. And how do we measure the value of social inclusion, and the value of friendship, and the value of full community participation? 

And that's why Sally's and Tim's research is fundamentally important because it gives the community... an opportunity to say to the government, Here - here's what we're doing for social and community inclusion and government policy is making a difference, but the sector is driving social change, and that's really important.

Elly Desmarchelier 40:27
That does bring me to a question for you, Sally and Tim: is the NDIS actually measuring the right thing?

Sally Robinson 40:35
I think that's a really big question, Elly... I'm not sure if they're still measuring this. I really hope they're not, but I used to support young people who... in their NDIS planning meetings, and it used to be such an intensely painful question when NDIS planners used to ask people, How many friends have you got, and has this changed since your last plan? And it was such a dreadful question to ask, because counting the number of friends that you have, and whether the number of friends that you have has changed over time, is completely the wrong question - for any of us, because it doesn't measure what the quality of friendship is or how friendships are enacted. And you all talked about that so beautifully, and... at the beginning of the webinar. 

And you know, it really doesn't talk to what friendship means or or how, what sort of things we get out of friendship. And you know.... what sort of meaning we we take from our friendships is different for all of us. So in terms of friendship and sense of belonging, I think it's... these things are quite hard to measure, but counting numbers is not the way to do it.

Elly Desmarchelier 42:06
Sally, I have, sorry, I have one more question, and then I have a question specifically for Tim... so Sally, how do you measure the quality of a friendship?

Sally Robinson 42:17
I don't know, I mean, I'm a qualitative researcher, so I'm always going to want to ask somebody how they feel about it. So I think it's hard to... and I would always be wanting to measure somebody's satisfaction in how they feel, or somebody's sense of fulfillment in how they feel about their connections. And I'm always really interested in taking a very broad approach in how we understand that, as a researcher. But I mean, I can, I would answer that as a researcher. 

For a social policy like NDIS to measure that, I think we need to look at it in terms of broader measures about life satisfaction - not just in measuring friendship, because friendship and connection and sense of belonging, and the way that we feel about our embeddedness in community, all of those things are sort of other... and like they're meshed together. And I don't think we can pull out just one of those things and say that... if we measure just one thing, like the example I gave was number of friends... it might be an indicator of something, but you can't just pull it out and count it by itself as something that is... someone's life is great if they've got X number of this or Y number of that.

Elly Desmarchelier 43:37
Tim, the research showed that attitudes is really important. If you wanted to send a message to the community about attitudes and what attitudes are good attitudes, what would you want to say to the community?

Tim Cahalan 43:59
That's on the... don't underestimate a person with a disability... and... from personal experience, if... if they're pointing... if they're looking at someone because they look different and the person doesn't... person with disability seems to be ignoring and doesn't notice, don't assume that they haven't noticed.

Elly Desmarchelier 44:34
Yeah.

Tim Cahalan 44:34
Yeah. But also that, just know that they will, everyone with a disability has got a lot more to offer than meets the eye.

Elly Desmarchelier 44:48
Absolutely, as I said, we make the best friends, Tim. Emma... with your political hat on... what do you think... the, you know, the government should be taking from this research in terms of, you know, policies and... how it changed, how it informs projects? And what did you take from this research that you thought of, you know, this really should be informing the policies and and projects of the government?

Emma Myers 45:25
I think of the research is... I want to say groundbreaking, but it isn't groundbreaking in the notion that we we all kind of feel the same way, but I think it is groundbreaking on paper to then present to the people who make the policies and how important social interactions actually are to our day-to-day lives - and... I think it's equally as valuable. In the case of co-design, genuine co-design, a lot of the people I speak to say that the government isn't doing enough when it comes to co-designing support systems and updating policies that really affect us a community. They're chucking the phrase co-design around so much, but they're not actually... but a lot of people feel like they're actually not being heard, even when they're contributing. 

And so I think that this will go a long way to kind of... hopefully improving government processes for disability support and wider social support.

Elly Desmarchelier 46:59
All right. Well, on that note, I want to thank our panel, and thanks Sally and Tim for your contributions. It's been a wonderful discussion - thank you so much. We're running out of time, so I now want to invite Megan and Saranna from the CP Active Change-makers program. I love this program, I get to host the live webinars every fortnight. Thank you both for joining us. It's great to hear from other people's perspectives. So tell us how you became friends through CP Active Change-makers. Take it away.

Saranna Schultz 47:37
Thanks, Elly. I might even back up a step, just in case anyone isn't familiar with CP Active, and the Change-makers. Basically, CP active is the advocacy or activism arm of Cerebral Palsy Alliance, and it's a network of people with all different kinds of cerebral palsy interested in advocacy and amplifying our voices for change. Young Change-makers is one of the things under it, where we learn how to advocate, I suppose, at the... simplest level, and some of the ways that we might do that, and also the safety nets, if you will, that we have underneath us.

Megan Lampa 48:35
Yeah... absolutely. I think when we just connect together, we're so much stronger. It's like, you know, when you get a bunch of little sticks together and you think like one little stick is not going to make a difference, but if you add them, then we're stronger when we bind together for our different experiences and... to have that, just start learning from each other and pumping each other up and be like, Yes, of course! Like, obviously! You know, someone will say, Oh, I know of others' experiences, but like... having trouble with this issue... it's like, Oh yeah, right? Experiences too. I'm not alone!

Saranna Schultz 49:33
That's exactly what it is. It's that sense of... for me anyway, it's the sense of, I'm not the only one like me - which, growing up, I clung on to flamingos, because that was the amount of people that I had around me, that I could find or see that looked like me. And... so it's, it's people that think like you, that have had similar experiences that are there... and that can go, Yep, me too!

Elly Desmarchelier 50:04
Also that... combined passion for advocacy and for trying to make the world a better place. You all share that passion. Isn't that right? Like, is it that joint passion for wanting to make change that brings you together?

Saranna Schultz 50:23
Absolutely. A lot of what we do is advocacy from and like those Young Change-makers, is... one thing underneath it, but we've got campaigns and petitions and I suppose, active work that we try and do to make a difference and to make things better for the... next generation of people with cerebral palsy or people with disability. For example, I've met with a couple of the politicians and that, around some of our campaigns. So yeah, lots of advocacy, lots of working together, putting our voices together, and as you said, Megan, combining all of our sticks so that we're stronger.

Megan Lampa 51:12
I love a good visual.

Elly Desmarchelier 51:13
I can attest to the fact that your individual sticks are strong to begin with. You are all incredible young people...changing the world all by yourself. But together, we are a force for good... I'm very proud to be part of Young Change-makers. If you know a young person with cerebral palsy, make sure you get them involved. Todd and I can probably both talk to the fact that political advocacy is an incredible way to bond with other people. In my young days, as a teenager in my early 20s, politics is a way of me finding friends with shared values. So I can understand that, and there's lots of people that do that. Advocacy is incredible because you find people with similar values. 

So thank you so much, Megan and Saranna for joining us, and for all our speakers and audience for a great discussion. We're going to collate all the feedback from this event in the Chat and make sure we take it on board. I know a feedback survey is not the sexiest thing in the world... Do I really have to fill in another form or another survey? But this is our first open dialogue of the year, and we want to make it better and more exciting and more engaging and more fabulous and have even more people to come. 

So that's why we have a feedback survey that we'll post, in the Chat... and we would love it if you could please fill in the feedback, and let us know what we could do to make this even better. If you loved it, tell us you loved it - we love great feedback. And we'll also be sending it to you, with a recording of this in case you want to send it on to someone who would enjoy the discussion. 

Our next event will focus on transport and mobility. As I said when we were discussing transport, it's such a hindrance to stopping friendships from growing, because getting to different events is so difficult with transport. Transport is such a huge issue for people with disability. So our next event is going to be on transport and how that helps or hinders a sense of belonging. It will be on the 16th of May, so please save the date at the link in the Chat. 

Thanks so much for being part of this engaging chat. I would like to see the chat go on...      I look forward to seeing you next month. I'm Elly Desmarchelier. You have a great day, and I'll see you very soon. Thank you.