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Intro: Choice and Control, a podcast celebrating people with disability. In this season we're talking about access, inclusion, and the National Disability Insurance Scheme. This podcast series is brought to you by Carers Queensland, NDIS Local Area Coordination Partner in the Community.
00:23 Jodie van de Wetering: G’day, I’m Jodie van de Wetering. Today, we're talking to some Queenslanders with Spina Bifida. Later this episode we'll meet Rainey, who’s helped make an important service more accessible to Central Queensland kids, and she's taking on the big boys in her new basketball wheelchair. But first we're chatting with Jaydon, David and George. They're all peer mentors with Spina Bifida Hydrocephalus Queensland. Their job is to support others going through life, and the workplace. So Jaydon, how do you get into that line of work?
00:54 Jaydon Cowan: I became a peer mentor because I was ringing SBHQ regularly. To put it bluntly, I was bugging them for anything: I was willing to volunteer, or if I could get a job, I just wanted to be a part of the organisation, like from the working point of view.
01:15 Jodie: And what was your employment history like before coming here?
01:16 Jaydon: I'd only had one, technically, one paid job many years ago. So like six years ago, I think it was, I was a receptionist for, technically 10 years, but only paid for one year.
01:33 Jodie: And how about you David, how did you come to be involved in the peer mentoring program?
01:36 David Swift: I applied for the job. I was given a heads up by the social worker there, Sonia, that there was a project coming up and I should look into it, apply for it. And I got it
01:48 Jodie: As well as the peer mentoring, what else are you doing with yourself David?
1:52 David: What else am I doing? I have been an avid gardener. Work-wise, I’m a group convener, voluntary, for Queenslanders with Disability Network, that's a once a month gathering that I host.
02:07 Jodie: And how about you, George? How did you come to be involved in peer mentoring?
02:11 George Kambouris: Well, my story goes back quite a few years. I've been part of SBHQ for many, many years. I've been on the Board of Directors for the Association, I've been a long-time member, long-time supporter of it. Like David and Jaydon, I found out about it through talking to one of the social workers, one of the OTs who said ‘we've got a mentoring role coming up’, and I also applied for it.
I also used to run my own little business called Living on Wheels, which was mentoring and lifestyle and programs for kids with disabilities. So that's how I came into the mentoring role, wanting to give back to the community and the Association that helped me a lot along the way.
02:56 Jodie: What does the role involve, as a peer mentor?
03:00 Jaydon: Lots. It involves having good communication skills, knowledge, how to interact with other people and help them through their obstacles. And we did resume writing and cover letter writing and interview skills. I personally learnt lots of computer skills, because when I first started I did not have very good computer skills knowledge.
03:29 David: I would say it's developing the mentee relationship and taking a journey with a mentee where they can discover what employment goals are achievable for them and really give them a chance to get the details and decide on what their future jobs might look like.
3:56 George: But also, I think it's on a different level too, it’s on a personal level, you know? It's supporting them in a way that I can achieve things if they work towards things. Setting goals: daily goals, or weekly goals, or monthly goals, or anything that will motivate them to achieve what they want out of life instead of just thinking that all they do is sit at home. So it's helping motivate them to, you know, be a part of the community, be a part of their family, be a part of whatever's happening in the world and not just letting the world go by.
04:44 Jodie: And how important is that mentor-mentee relationship with somebody who has that same experience of the world and has the same challenges?
04:55 George: It's very important. Looking back to when I was trying to get through life at the same time, I've had a mentor and now since I was 14. He's been my sporting mentor and that sporting mentor has followed me throughout my life, and it's helped me through out. Even though it’s sporting, my sporting career has helped me throughout my life to be able to communicate with people, to be out there with the community, not to be sitting at home all the time and wondering, what's happening with everybody else and why am I sitting here, why am I not outside doing things with people? So it's very important that people with disability have that involvement, inclusion within the community to be able to fulfil their life and not sit at home and let it all go by.
05:49 Jodie: Is it rewarding? Are you seeing some wins?
05:53: Jaydon: Yes.
05:53 David: Yes.
05:53 George: Yes.
05:54 Jaydon: Definitely. One of my participants came in and she had a very – I'm going to use the word ‘negative’, I'm sorry if that's not the right word – negative opinion of herself. And she was like, ‘I can't do this’ and ‘I can't do that’. And I was like, ‘Well, you can, you just maybe can do it differently from some other people, not everyone's going to do it the same way’. And she just didn't have a lot of confidence. So I showed her that she was capable, and she could do things. She was legally blind, and she left our course touch typing. I thought that was just amazing, because here’s me who can see and I can touch type. So I was so proud and so excited for her. It’s those things that I'm sure some people take for granted and it may seem small, but it's not, it's such an empowering, wonderful thing. And just having those things happen, it's amazing.
07:01 George: And it does rub off. When they do succeed, it does rub off, and that does make you feel like you've been able to help someone. If you can help just one person it's been worthwhile. And so this mentoring program and working with SBHQ is everything I’ve ever wanted out my working career.
07:21 David: I’ve found it, it's a journey of awareness raising about how to go about work, and how to organise yourself for work. I've had seen people who I've taught and mentored, with my assistance actually figure it out for themselves: what they need to do to actually be at a desk, and what they need to do to be organised for a day, which can be a significant challenge for lots of people with spina bifida hydrocephalus.
07:58 Jodie: And if you've come from a place under the old system where there were low expectations, where it was assumed you weren't going to be able to have a job or be independent, you’ve never been given an opportunity to demonstrate what you can do.
08:10 George: It's all about inclusion, it’s community-based, it’s employers interpreting what you can do given the opportunity. Everyone can do their best or above that, but they've got to be given that opportunity to do it. If they're not given the opportunity, they won't be able to do it. I think that's where we come in, is that we've been able to help the community or participants have that opportunity to come in and learn how to do things in the office. And hopefully, go out into the real world and be able to be a part of the community, be a part of a business, be a part of whatever they want to be a part of.
08:55 David: One of the things that I've seen is a growth in motivation once people make a start on something. And very often we we've had a little bit of a challenge in how do we get people to start things, and we all had a way of going about it. And what I've noticed is once they start, because I’ve said, you know, start anywhere, and once they start and get that sense of achievement rolling.
9:24 Jodie: Just getting those little runs on the board to get you started.
09:26 George: Exactly. Just for an example I had an 18 year old who had never worked before, and never been given the opportunity to work. And he's been out of school probably since last year and because of one thing after another, and then COVID came in, he hasn't been able to get that opportunity to learn what to do about resumes, cover letters, how to put himself out there, what to do when they get contacted. You know, it's a big learning curve for someone like an 18 year old. Probably a learning curve for a lot of people, but having someone who's just come out of school and never had to worry about writing a resume, never had to worry about cover letters, never had to worry about looking for work, now having to look for work – I think that's where we have been able to help this person. And now hopefully by the end of this year, they will have a job. It might be the first one, it doesn’t really matter where it is, they just want a job.
10:26 David: One of the mentees I've had has actually gone on to TAFE College. He decided during the length of the course with him he wanted to become a copywriter and he's gone on to TAFE College. He’s also joined a TAFE College program that's about employment. So what we're providing in my view is the first step up, that then leads on to bigger things. And I think that's really the right role of doing the project.
10:54 Jodie: Let’s move back and take a broader view: in the team's experience, is society getting better at accepting, including, and respecting people with disability?
11:05 Jaydon: I think it's trying, it's a really hard question to answer because in some aspects, yeah, I’ve seen heaps from improvements. Like having things down at the beaches now, so we can wheel in and go for a swim. I just last week went to my favourite shop, that for years has not been wheelchair friendly. Like, they have their stuff everywhere, you can't get through the aisles, I don't even know how people walk through them. And then I went last week, and they're completely wheelchair friendly now.
I'm like “What made you do this?” and they’re like “You nagged us every time you came in,” and I was like, “I'll take it! Thank you!”
So yes, people are trying, there are improvements, but there's also a really long way to go. There's also a long list of places that just aren't ready for us yet, which is sad. Times are changing. We've been around for a while, I feel like they should be up to date, but I guess they’ll get there.
12:05 George: With the inclusion and accessibility, they have come a long way. All three levels of government have come a long way, but I think there's a long way still to go. Private enterprise is trying to catch up. Everyone's trying to catch up, everyone's trying to do the right thing, but we still have a little way to go to make sure that everything is accessible and everyone included. We’ve got to have that conversation. We've got to start that conversation as peer mentors, and I think it's in our role to start that. It just needs to be talked about more often. I think once we've talked about it more often, it's going to get out there, and get out there, and get out there, and it'll work. I think if you've got the right attitude and you've got the right communication and the openness to let the inclusion work, that's what it's all about. But if they haven't got the right attitude, it's going to take a bit longer to get things done.
13:05 Jaydon: Agreed.
13:06 David: I think by an example, our mentees are seeing how to build those relationships in the workplace, where they can actually work effectively or contribute to teams. Simple things like how do I work around the photocopier and make sure somebody else gets photocopying done in the way they need it done. And the skills of listening and so forth. That's the real stuff that we're doing around inclusion in a workplace setting.
13:36 Jodie: Rainey is a young Rockhampton resident who also has spina bifida. She inspired Life Education to modify their iconic van that travels around doing school visits, to make sure all children can access Harold the talking giraffe. I caught up with Rainey and her mum, Amber, to find out how it all happened.
13:54 Rainey Countryman: I had to crawl up the stairs, and it was very hard and it took a lot of effort. But it wasn't that many stairs. It was really hard, but now I don't have to do that. We got a lift that I could go on with my chair, and then I could just get into the Life Education van in my wheelchair.
14:20 Jodie: So what was he involved in letting Life Ed know there was a problem, and getting it fixed?
14:25 Amber Countryman: Actually in this instance I didn't have to do a thing, which is unusual because we feel like sometimes you have to fight your whole way through life to just to get the same opportunities as everyone else. Whereas in this instance Liz, the educator of the Life Education van saw there was a problem. She actually took it on herself to ask permission to film Rainey crawling up the stairs and then use that as part of the grant application. Wrote a great grant, was successful, and it all got installed and done.
So that was wonderful from a parent's point of view, not having to do all that work because man, we've got enough to do already, with disabilities and stuff, we're already overloaded. So for her to do that, and then to be successful and this problem to be solved without any input from me at all, was amazing. So it's a great outcome for everybody. Not just Rainey but all the kids with disabilities who are going to use that Life Education van, who have the right to the same fun and learning. In that Life Education van is different to what they learn in school, and they deserve to have that too. So yeah, it's great.
15:32 Jodie: Is there a lot of fighting involved in being a parent of kids with additional needs?
15:39 Amber: Look, there is. I've had a few battles I've had to go through, like just getting footpath access, or even one issue somewhere where they washed the bins out over a path. Rainey’s wheelchair’s got to go through that dirty water and then she's wet and dirty all day. And I'm like, ‘well, that's not happening’. To dodge that we had to go the long way and go up a hill and around the long path to have the same access as all the other kids. And it's taken me a few years to get some action on it.
Sometimes you don't want to have a fight. You've just got too many other things to deal with, but look, it's happened. It took a few tears, actually, was how I got it done in the end, but look, we got it done. And all the medical stuff we've got to deal with, sometimes you're just not listened to and you have to really put your foot down. So yes, there is a bit of fighting involved. Standing up for yourself, really.
16:28 Jodie: Does that get easier with practice?
16:30 Amber: I don't know if it does, actually. Some people think you're doing it for attention, or to be known, but really we just want to have a normal life too, you know? So I think a lot of it's to do with attitude, and worrying about what people think about you, but sometimes you've got to go ‘you know what? Stuff it, this ain't good enough and I'm going to do something about it.’ So, yeah.
16:54 Jodie: When you do get those wins, like the Life Ed van, like getting decent footpath access, it makes all the fighting and the angst worth it.
17:01 Amber: Yeah. You can just get on with it, you know, just like everybody else is allowed to just get on with it. That’s all we want is just a bit of ease in life to do the things that we need to do. And yeah, it just makes everything a lot easier and happier and appreciated. Really. We're a lot more grateful, I think, as a community, just in general grateful for being alive and having a good life because you have that crappy stuff that you got to deal with and it makes the good stuff so much better, you know what I mean?
17:35 Jodie: And since you've come over to using the NDIS, what sort of support has that provided?
17:41 Amber: To be honest paperwork-wise my life is so much better. Someone else does the paperwork. And all the funding comes from the one place, so you’re not chasing it from 10 different places. That's awesome, because as I said, we've got enough to do already. We've got all these extra care needs. So that's great is to have the plan managers there to sort it, and they know what they're doing. I don't need to put the research in to know how to do those things. So that's great. We know we're sorted and we don't have to worry about if we're going to have everything we need to get through.
Stress is a big deal in this lifestyle. So anything that can be done to reduce that stress – in the long term, it's all about mental health too. I really do appreciate particularly all that paperwork and stuff is just taken care of, the bills are sorted, and we've got what we need. I mean, isn't that what everyone wants, you know, in life? So yeah, it’s a big deal and it's really appreciated.
The other thing is equipment. If we need it, we get the assessments done, we get the equipment. It’s just smooth sailing. We've got our helpers at Carers Queensland and we just do the assessments, they sort it, they do their side of the paperwork, done! It's just so much easier. So we've got a trike for Rainey that we get out and about with, we've got a basketball wheelchair on the way, which is awesome because Rainey loves basketball and she goes there every week. We've almost got the chair here, it should only be a couple of weeks away. It’s going to be pink and aqua, I think.
19:21 Jodie: That sounds fantastic. I think I had a pair of netball shoes in the similar colour scheme that was about Rainey’s age, so highly approve. Hey Rainey, could you tell us a little bit about wheelchair basketball?
19:32 Rainey: It's really fun. I have a lot of teammates, and they're all older than me and I'm the youngest one. They help me with things that I don't know if I need help with it. I have once knocked over one of my teammates in their chair. And I've only done that once. It was really funny because all of my teammates were cheering and clapping.
20:00 Jodie: And what sort of difference will having that wheelchair make?
20:03 Rainey: It'll be better because then I'll get to have my own, and I wouldn't have to borrow any.
20:11 Jodie: So Amber are you about to take on another hat as the sports mum?
20:15 Amber: No mate, I’m not sport at all. That’s Rainey’s Dad’s allocation there. He’s quite good with sport and he's interested in it. I think he actually joins in sometimes when they go to basketball as well. To have Rainey’s own chair, it will actually fit her, because the ones we have to borrow are old chairs, they’re other people's and were measured for those people. And so we kind of try and strap Rainey in and it's not a great fit. We don't want to cause further physical issues, we've got enough. So to have a wheelchair that's actually built for her, that will be great.
20:50 Jodie: Because she mentioned she’s the youngest, I'm also guessing she's probably the physically smallest of the players?
20:56 Amber: Exactly, exactly. She's doing well. She gets out there with all these guys, and a couple of young girls there too, they get out there and rouse about, and they've got smiles on their face, loving it. It's really good fun sport to watch, actually. I enjoy it. Yeah.
21:10 Jodie: So as peer mentors, whose own lived experience is going to be really relevant for kids like Rainey, what advice do our team of mentors have for the next generation?
21:19 George: Everyone's different. Everyone has a different way of communicating. Everyone has a different way of thinking. At that age it was hard, because you were, you weren’t seen and you were never heard as well. Good on her for speaking out. If she speaks out, that's great.
Speak out, but if it's not helping contact us so we can support and help. Get other support around you, get family involved, get friends involved, talk to your local government.
21:54 David: And make as many connections as you can. You're not actually alone and you're not different. You sit with your peers. Your friends are also your allies in getting access, and you will live within your friendships and your family going right forward. So sit there.
22:17 Jodie: Just thinking about that, that raises a really important thing. How important is it, both as mentors and just as colleagues and as humans existing in the world, how important is that feeling that somebody else has got your back?
22:30 Jaydon: Oh, it's everything. It is very important. I can't imagine going into the world and not having someone there beside me essentially, metaphorically or literally, to support me in whatever I'm trying to achieve. I think it's very, very vital because it's scary. You know, sometimes it can be very scary and knowing you have that person’s support is, it’s everything.
Thank you once again for tuning into Choice and Control, the Carers Queensland podcast.
For more information about Carers Queensland, the National Disability Insurance Scheme, or the Local Area Coordination Program, please connect with us online at carersqld.com.au. Or you can catch up with us on Facebook at facebook.com/CarersQueenslandNDIS.
We hope this podcast can become a place for people with disability to share their experiences and their stories. So, if you have a story you think we should know about, please contact us via the Carers Queensland Enquiries Line at 1300 999 636, or via email at email@example.com.
Until next time, thanks for listening.