Kirsty: [00:00:00] Hello and welcome to Enabled, the podcast where we talk about, normalise and celebrate disability and mental health.
We've got a very cool episode coming up today, Colin.
Colin: Very cool.
Kirsty: Yeah, because today is International Day of People with Disability. [applause]
It's the first time I've used that.
Colin: Wow.
Kirsty: It's the 3rd of December.
Colin: That's very high tech.
Kirsty: Thank you.
Colin: Is it the 3rd of December already?
Kirsty: Yes. So 3rd of December, which is a Sunday, so we're interrupting our usual scheduling to bring you this program. And only good things can happen on a Sunday, right? Great.
Great Sunday. And we're also partnering with Port Macquarie Hastings Council to bring you this program.
Colin: Uh huh. That's right. We are.
Kirsty: Which kind of, I mean, it sort of shows you that this day, it's kind of a big deal.
Colin: Yep. Yeah. Big deal.
Kirsty: We should probably talk about that because we've said on this program a couple of times, one in five Australians have a [00:01:00] disability, which means many, if not most of us will either have a disability or we know and love someone or probably many people with disability.
So I feel like we all kind of have skin in the game and hopefully, hopefully, we're all invested in making the changes that need to be made in the world so that people with disability aren't disadvantaged because they're living in a world that's not made for them.
Colin: That's right.
Kirsty: And I love that Port Macquarie Hastings Council are also committed to that.
And they actually brought the guests to us, didn't they?
Colin: They did. Yeah.
Kirsty: So who do we have on today?
Colin: Hugh and Nate Castelli.
Kirsty: Yeah, so Nate Castelli is the youngest guest we've ever interviewed.
Colin: Yeah, that's right.
Kirsty: 14 years old. So that was pretty cool to sort of talk to the younger generation. He's also non verbal.
Which was a very interesting element to bring to a podcast, you know, an audio medium.
Colin: That's right.
Kirsty: But like anything, like anything in the world, there are adjustments that can be made to make this space accessible [00:02:00] and we made those adjustments and it's a really cool episode. I'm excited, we are excited for you to hear it.
Colin: We are.
Kirsty: Happy International Day of People with Disability. Keep listening. We've got Hugh and Nate Castelli coming to you now.
…
Hi, Nate. How you going? Good to have you. Thanks for being here. Now we have, I don't know if you remember last time, but we were really enjoying playing with the different sound effects on the soundboard.
Do you remember that? Do you remember these ones? Ready? Do you remember how it changes how my voice sounds?
Nate: yeah.
Kirsty: Do you remember? Is this one your favourite?
Yeah? This one?
Hugh: What does it do to my voice?
Kirsty: Ready? Alright, off you go dad.
Hugh: How does my voice sound? What do you think? Does it sound normal or different?
Kirsty: Try again.
Hugh: Different?
Kirsty: Ooh, is that how Dad normally sounds? Alright.
So who have you got with you today? You've got Dad. Hello Hugh, how are you?
Hugh: I'm well, how are you doing?
Kirsty: Good, thank you. Nice to have you here with us today. So [00:03:00] Nate, we did send you some questions in advance, which I should say.
We do for a lot of people. Most people do want us to sort of send them some sort of an idea of what we're talking about. Not Colin, he likes to go on the fly, which I don't really understand.
Colin: Yeah, that's fine by me.
Kirsty: Yes, everybody else likes to be prepared. So I'm with you, I like to have the questions done in advance.
So you have been able to upload your answers onto your talker prior to the interview. But here we go, here's the first question.
So Nate, you're non verbal. But that doesn't mean you can't communicate, does it? Can you tell me all of the different ways that you communicate?
Nate: Hi, there are a few ways I can communicate.
I use some sign language. And I have this talker.
Kirsty: Awesome.
Nate: I also use gestures and body language.
Kirsty: So, Nate, can you tell me about your talker?
Nate: My talker is awesome. It is hard, but I'm getting better.
Colin: It sounds to like you're getting better me.
Nate: Lots and lots of words that I can use to say what I am thinking.
I like that it will give me independence. I won’t have to rely on anyone for my communication.
Kirsty: Yep. That's amazing.
Colin: Yeah, that's awesome. It really is.
Kirsty: Good job, Nate. I'm going to ask Dad a couple of questions as well, in the mix of all of this. So what's the journey been like to get this assistive device?
Hugh: It's been a bit of a long process. A process of elimination, trialing a few different types of programs. And variations of devices over the years. To where we are now. And finding therapists with the [00:05:00] knowledge of it and learning it ourselves has been a task.
Kirsty: Yeah, absolutely. After Nate was born, you learned sign language, is that right?
Hugh: As a family, we made a decision early on in Nate's life, that we would use whatever we could to help him in his communication. This started with like, keyword sign, when he was really young. So like, signs for eat, drink, finished, things like that. And when he was in year one at school, I did an introductory course in Auslan, which went on and on and ended up with Certificate 3 a few years later.
Kirsty: It's amazing. I love sign language. I just think it's the coolest thing ever.
Hugh: I want everyone to know it.
Kirsty: Right?
Colin: I'd love to do it.
Kirsty: It's the best. I've done a keyword sign course, but it blows my mind that Auslan is its own sort of grammatical structure. It's totally different to the way we speak in English.
This is called a LAMP device. Is that right? Language Acquisition Through Motor Planning.
Hugh: 100%.
Kirsty: You, your wife and Nate obviously have all learnt how to communicate through this device?
Hugh: So the best way for [00:06:00] Nate to learn it was for us to model the use. So we had to learn as he went along.
Kirsty: Exactly. Because that's how we all learn language, isn't it? Through people modeling it to us. So at home, you guys are all communicating to each other through this device. So really, there's multiple languages going on in your home at any one time, is that right?
Hugh: Yeah, absolutely. There's electronic, vocal and silent communication going on at any one time.
Kirsty: What kind of difference has this device made, the talker?
Hugh: As he accepts the use of it more, it's giving him more and more independence and his confidence is growing. And so is his cheekiness.
Kirsty: So Nate, as I said, we sent you these questions in advance, so you have been able to upload your answers onto your talker prior to the interview. So all you're really having to do now with us is kind of hit a button or two and your full answer comes through. But it's not usually that fast, is it?
Because you can't preload answers to every question [00:07:00] that you get asked in life. In real time, if I were to ask you a question now that you haven't got in advance, how long does it actually take you to answer a question using your talker?
Nate: Sometimes it can take a while.
Kirsty: Yeah, but because it takes you a long time to answer, does that mean I shouldn't ask you?
Nate: No. Please ask me. Even if I can't answer, I'd like the opportunity to try to.
Kirsty: Yeah. And do you find that when people have a question about you, they don't usually actually ask you, they ask Dad, or they ask someone that you're with?
Nate: It depends who it is, but yes, most of the time that happens.
Kirsty: Mmm. How does it make you feel when that happens?
Nate: Yeah.
It makes me sad and a bit frustrated.
Kirsty: Yeah. So Nate, can you tell [00:08:00] me about your disability?
Nate: I don't see myself as any different to other kids, but some things like running and jumping are harder for me to do.
Kirsty: And what do you want to say to other kids or adults about what it's like to be you or what it's like to have a disability?
Nate: I just want to laugh and have fun like everyone else. I just need a little bit extra time and help. It is who I am. Good and bad. Everyone has challenges. Some people's are just bigger than others.
Kirsty: I love that answer.
Colin: Yes. So what are your favourite things to do, Nate?
Nate: I love my sport, athletics and [00:09:00] swimming, but I am also starting to sail, which is a new challenge.
Colin: Ooh. So you've been sailing?
Nate: Yeah.
Colin: I love sailing.
Kirsty: That's so cool.
Colin: Recently, you went to the state championships for Little Athletics and the Port Macquarie Hastings Council helped you out to attend that with their sporting fund that can provide financial assistance for local athletes. What was it like for you to go along to the state championships?
Hugh: It was actually the Nationals. National Championships.
Kirsty: Oh my goodness. Excuse me. Sorry, Nate. We have undersold you.
Colin: Where was that?
Hugh: Melbourne.
Colin: Wow. Hey, the Nationals.
Nate: It was an amazing experience where I was able to meet other athletes with a disability from all around Australia.
Kirsty: Nice.
Colin: What do you really love about sport?
Nate: It is [00:10:00] fun. I meet new people and learn to do things I didn't know I could do.
Kirsty: I've never had that experience with sport. Finding that I could do things that I didn't know I could do. It was more realising what I can't do when I play sport. So I'm very impressed with that, Nate.
Colin: Who is your favourite sports star?
Nate: I think Ryley Batt is amazing and Bennett Powell too.
Kirsty: Absolutely. Who was the second one?
Hugh: Bennett Powell.
Kirsty: Bennett Powell. Who's that?
Hugh: He's a local guy. He does triathlons. He's got cerebral palsy. He does triathlons, rides bikes, runs. He's just, he's a little inspiration for him. Big inspiration, because he's a big fella.
Kirsty: We're so keen to get Ryley Batt on the podcast, except I would be so nervous I wouldn't know how to speak. But we'll have to look into this other guy as well. That's really cool.
Colin: Paralympics in the future. What do you think?
Nate: Yeah. That would be amazing. [00:11:00] Maybe.
Kirsty: That'd be so cool.
Colin: Now, I've been told that you also do dancing.
What kind of dancing do you do, Nate?
Nate: Jazz.
Kirsty: Oh. Jazz dancing.
Hugh: Modern sort of dance.
Kirsty: That's so cool.
Colin: Wow. I did breakdancing…
Kirsty: As if you ever did breakdancing! We were talking just before, I've been teaching my kids lyrics to the seminal classic Ice Ice Baby and Colin was like: Oh, do you know the dance?
I was like: Show me. And he wouldn't. There's no way you've ever done breakdancing.
Colin: I'd break something if I did.
Hugh: Hey, that would be a real break dance.
Colin: It’d be a big breakdance. I'm past that.
Kirsty: All right.
Colin: So what do you love about dancing Nate?
Nate: I love music and moving to it and learning new ways to move all the time.
Kirsty: Very cool.
Hugh: Are you a good dancer?[00:12:00]
Can’t say you aren’t.
Colin: He's shaking, he's shaking his head so he must be a good dancer. I'm waiting for him to bust a move here.
Kirsty: Yes, you and Colin will have to have a dance off after this and we will absolutely have to film it.
Colin: Ice Ice Baby on. Let's do it. All right.
Kirsty: Oh, he’s doing it!
Hey! There you go. That's awesome. Good job, Nate. I love that. You do love dancing, don't you?
Colin: So let's talk about school. What's school like for you, Nate?
Nate: School became a hard place to be and I stopped wanting to go.
Colin: From your point of view, Hugh, give us your perspective on, like, Nate's school experience, perhaps, and what the disability section in schools is like.
Hugh: So, unfortunately, Nate doesn't fit into a box the way the education department would like. So, it's been a bit of a battle and at times to get a [00:13:00] level of funding that's required for him to maintain his education.
Colin: So you've decided to homeschool?
Hugh: We've been toying with the idea of homeschooling for a little while.
It was never really a serious discussion. Until something happened at school that caused him to stop wanting to go. It was totally out of character for him. We've had him in tears in hospital when the doctors told him that he couldn't go to school for that day, he had to stay in hospital. Yeah, so we reworked our rosters between us.
And we've just recently got the go ahead to start the homeschooling journey.
Kirsty: Amazing.
Hugh: Where we hope we can give him the necessary skills to get on with his life.
Kirsty: And were you able to figure out what it was that caused that?
Hugh: Nah. He has just said, through his talker and through his signs, sad and, and hurt.
So we can't say definitively what happened. We're just assuming that there [00:14:00] was something with another student that obviously went unnoticed by staff. But it just built and built to the point where... And thankfully, it stopped with him just not wanting to go to school and it didn't progress. Other than that, we don’t know what has happened.
Kirsty: How does that feel as a parent though, to know that your child has undergone some sort of trauma and you don't know what it is?
Hugh: Devastating. I can't, I can't put it in words. Like he had sleepless nights, so we had sleepless nights. And just. Why are you crying, buddy? What's going on? And then for him to get dressed, ready for school, then go back to bed and say, no, I'm sick.
And he couldn't go on like that.
Kirsty: No.
Hugh: There was no point forcing the issue to the point where, yeah, he would potentially do something that...
Kirsty: This is a reality for so many parents, especially parents of disabled kids. And a lot of them don't have an option. They're not able to rearrange their schedules.
They're not able to do anything else. Yeah, [00:15:00] I mean, it's the schooling system is really broken in a lot of ways, but especially for kids who do need that extra assistance.
Hugh: And it's like I say, if you're somewhere outside of the box, you find it very hard to get into the box.
Kirsty: Exactly.
Nate: He's learning, but it is fun, and I am not so worried now.
Kirsty: There you go. That's good. So Hugh, why is your life better with Nate, and what makes you proud of him?
Hugh: He's my life, like, yeah.
Nate: [sound]
Kirsty: That made him happy. You like this answer, don't you Nate?
Hugh: He's got so much drive and determination and cheekiness.. Like, I know I'm biased, but if everyone had his amount of persistence and tenacity, along with his compassion…. Sorry.
Nate: Cry?
Hugh: Can you read it for me?
Nate: Nah.
Kirsty: Nah? That was very clear. Good job.
Colin: That was very distinct.
Hugh: You're alright mate. Um, yeah so, if everyone had his amount of persistence and tenacity, along with his compassion and empathy, the world would be a much better place.
Kirsty: Absolutely. Yeah. Awesome. How would you say being Nate's Dad has changed you?
Hugh: It's made me more aware of the people in our community with differing needs and how we as the general public can be all a little bit more understanding of others.
Kirsty: Yeah.
Hugh: Have to be.
Kirsty: Absolutely. It has to happen. Alright Nate, question for you. Are you ready? So Nate, what makes you the most proud?
Nate: Maybe my determination to try new things.
Kirsty: That's cool. That's a good one. What’s your favourite thing about Port Macquarie or your favourite thing to do in Port Macquarie?
Nate: The people. Most I have met try to help and encourage me.
Kirsty: That's awesome.
Hugh: There are some good people in Port.
Kirsty: Yeah, that's, [00:17:00] I love that answer. All right. So this episode, it's a big episode that we're doing. It's for International Day of People with Disability, and we're doing it in partnership with Port Macquarie Hastings Council, but they are right now working on a project to ensure that the facilities and outdoor spaces and resources in Port Macquarie are accessible to all people.
Accessibility benefits everyone. So it's super important. So we've got an opportunity now to give the council feedback, they're definitely listening to this podcast, so you know they will hear you. What would be one thing that you would change to make Port Macquarie more accessible to all people with disability?
Hugh: I think they're on the right track, um, so it's not so much change, but maybe a broader option of facilities and events. Um, and with that, more funding and initiatives suitable for youths and young adults. There are options for the young, young kids, and for adults, but there's a bit of a vacuum in between.
Yeah. So, a transition from kid to adult.
Kirsty: Yeah, as [00:18:00] in, in events that they run?
Hugh: Yeah. And, and facilities where they can, the events can be held and obviously just. Things to do. And, yeah. Some increased community input in decision making.
Kirsty: Yeah, absolutely. I think that is currently their plan is they, they want to get people in the community with lived experience to help them audit different facilities.
Because that's what you need. You need the lived experience. Because I don't know. I can't walk into a venue and go, oh, you know, this is not going to be accessible for wheelchair users or somebody needs a change space over here. I don't know that.
Nate, you have been unreal. Thank you so much for coming on our podcast.
You've been the best guest. And thank you Hugh as well.
We're very excited about this episode. It's going to be awesome.
And thanks everyone for listening to Enabled and we'll catch you next time.
Colin: Bye bye.
Hugh: Thank you very much.
Kirsty: Thank you guys.