All In - Episode 3

Shannon 00:00

Adam, welcome to all in the show that celebrates the incredible world of disability, arts and culture where creativity knows no bounds and voices are amplified. My name is Shannon, and I will be one of your co hosts.

Adam 00:20

My name is Adam, and I will also be one of your co hosts.

Nicky 00:24

Hello. My name is Nicky, and each week we will dive into all things disability, arts, advocacy and culture, from

Adam 00:32

spotlighting under represented voices to discussing issues that matter to people with disabilities like us. We're here to shake things up.

Nicky 00:41

This week, we will be joined by musician magnets and Fauci Otis from valid to talk about the importance of disability advocacy. Get ready

Shannon 00:51

for a ride through creativity, community and change, because in the world of everyone's invited

Adam 01:02

first though, welcome to our arts and culture segment access all where we celebrate the vibrant world of disability creativity, from Visual Arts to groundbreaking performances. Each week, we will be spot lying talented artists who are breaking barriers and redefining what it means to create

Shannon 01:21

today, we are highlighting the incredible musical artist magnets, magically blending ethereal harmonies with the touch of attitude. Magnets is the captivating solo project of multi disciplined artist Siobhan maginity, trained as a pianist from the age of seven. She was raised on the soothing sounds of Enya and the raw intensity of whole her journey took her through various towns across Australia, but it was in Melbourne that her passion for indie pop truly came to life. We spoke to Siobhan this week via zoom, starting to feel it all is out of me. Thanks for joining us today.

Adam 02:05

Magnets has a brand new record out diplocusis. Can you tell us about the making of it?

02:13

Oh gosh, it's been years in the making. I feel like everyone only sees the sparkle and the glitter at the end, but it's been two years of development from production all the way through. It's a long journey.

Adam 02:24

Yeah, yeah, that's, I guess that's the magic of independent music. Pig, of course, who are your biggest influences?

02:36

I reference her a lot. Enya is a big influence for me. You can hear her in the vocal layering, just because she's probably the first musician. I was like, Oh, wow, that I remember hearing. But other more contemporary ones, Juliana Barwick was a big influence for the last few songs, probably more of the direction I feel the music would go in in the future.

Adam 02:56

Nice, yeah. And how does having a disability influence your music in general,

03:02

influences everything. Influences when I can create, how I can create, what I create. It's yeah, it's within me. And the music is inseparable of me. So it is all connected.

Adam 03:16

And you can hear those tones throughout your music as well. It's so beautiful. One of the ways you hope your music impacts people, both with and without a disability,

03:28

I guess, well, for individuals who don't have a disability, who are they? I mean,

03:39

I feel like it's yeah for those people, I hope that it educates and opens a conversation of compassion. And then for people that have a disability, especially one that relates to the experiences I have, I hope they feel seen or understood or connect with it in some way that says, yeah, oh gosh, I feel like that too.

Adam 03:57

Yeah, being heard is I mean, obviously it's one of our phrases we reference quite often here, and I love that answer. What are some of the biggest barriers that musicians with a disability face in the industry?

04:14

I think a big one is isolation. It's not as easy, potentially, for us to participate in a lot of the events or access, either physically or energy wise, the world around us. So for example, my show coming up in December is a matinee, intentionally, because my energy levels are, gosh limited as they are doing a headline show at 11pm isn't accessible for me, so I just didn't want to do it. And

Adam 04:44

you've got two quite important shows coming up. Obviously your headline one, and then also, yeah, over the dead over our dead body performance, too.

04:54

Really excited about that one. They'll be. They're very different shows. So I hope that the. Audiences gravitate to what they prefer over our dead body is like very intimate, only a couple songs each artist stripped back gorgeous and celebrating bakehouses efforts to install a giant lift for accessibility in their venue. So very proud. But then the daytime launch on the first of December is like full band energy. So it really depends what you're after.

Adam 05:22

Yeah, something for everyone, hopefully. And yeah, what's your favorite song on the record?

05:28

Ah, anxiety is my favorite song. It actually is the most calming song on the record, but I just think it's so beautiful. And it also flexes my classical muscles, which, you know, I write indie pops. So Everyone just assumes that you write in four chords all the time. But I'm like, Yeah, listen to me write in 15 four time signature.

Adam 05:47

Yeah. And obviously, with the reference the name at the start of this interview with diplocusis, for people who may not know, I mean, obviously I had a couple of cracks that blading had to pronounce and to start off with. But for people who might not know, can you give a bit of a just a example of what it is?

06:12

Yeah, absolutely. It's a condition where the cochlea, the organ of hearing, is injured, and so sounds enter the ear, but at that part that the Cochlear is injured, it splits into two, so you hear an echo, and the Echo is quite dissonant. That makes it very hard to pitch music. It's actually the reason why they think some people are tone deaf. They might have been born with it, so they just can't pitch so I've had to work very hard to retrain my ear and lean in on the muscles to kind of hone in on a pitch, but it's much more difficult now than it was. Yeah,

Adam 06:48

thanks for your time here. It's been really appreciated. And back to the studio. Yay. Thank you.

Nicky 06:57

You can listen to magnets new record on all streaming platforms as well as band camp, we think you should give her a listen. She's fantastic. Thank you so much. Magnets for joining us.

Shannon 07:09

This week, we are reviewing the ABC series plum. Plum follows TV personality Peter the plum lum whose life is turned upside down after a brain disorder diagnosis, struggling to reconnect with his family. He's guided by the spirits of famous poets to find his voice and confront his past. Nicky, you've watched this, what were your thoughts on it? So initially,

Nicky 07:34

when I read plum was going to be showing on TV, I was quite excited, because there's such an under representation of brain injury. In this case, Peter lum has chronic traumatic encephalitis, which or encephalopathy, I apologize. We assume that that's significant only to the sports community, because we hear about it in NRL and slowly into Australian rules. However, CTE can affect anyone who has repeated brain injuries, repeat, you know, repeated post concussion syndrome. And unfortunately, with CTE, it can't be diagnosed till post mortem, but we do see the symptomology. And the symptomology of CTE is very similar to a lot of brain injuries, like strokes, aneurysm ruptures, all of those sorts of things. And from my lived experience of just eight years ago having a newly acquired brain injury, I was really hoping the representation would open up a lot of dialog, not just about CTE, but brain injuries in general, and I felt like it really missed the mark. From a disability perspective, I felt a lot of aspects were too tokenistic. It was much more about toxic masculinity, alcoholism. You can't tell the difference between the brain injury symptoms and the alcoholism a lot of the time. And Janet Anderson as to Tanya was the warmest, beautifulest character, absolutely. And it's great to have you know transgender actors, but it felt tokenistic. Did it ever? Yeah, the same thing happened with crystal Nguyen as a wheelchair user, I love the disability representation when it's done well, but this felt like it was trying to shift the perspective of masculine, toxic masculine NRL communities as as being much more accepting. And I felt like it's really self indulgence. Oh,

Shannon 09:39

I could not agree more with you on that. It was like you said it was very tokenistic. It was like, Oh, here's a sheet. Let's tick this box. Let's tick that one. It felt very disingenuine. It was even for the first three episodes, I felt it really hard to connect with the characters. They almost felt like character. To Choose. Oh, they were not really people, and it just seemed so totally unrealistic. I mean, even things like, you know, going on about the little milks, and I'm thinking, who hasn't seen those in the cheapest motels ever? It was all these little things. It just wasn't built well. And I felt that that was detracting from the real issues they had this focus on this whimsy. I don't know. I mean, how do you feel about

Adam 10:25

it? I mean, yeah, if this was released probably about 20 years earlier, then it would probably fit in with the time of representation that we had at that time. But the fact we're now in 2024 it it's a bit too up the sharkies, you know, kind of rugby, band locker room, and also, yeah, the strange blur between not the clarification is not clear in the first few episodes, in particular, the clarification not clear if, and in particular whether, in the first episode, when he was working in the airport as one of the baggage carriers, he has a lapse. But it it's, in my opinion, it's not clear whether it's from the brain injury that he is suffering or the alcoholism issue that he'd been suffering for the previous Yeah,

Shannon 11:31

see, I mean, I suppose with that particular scene, I wonder if that was a creative decision. I mean, for me, it came across as the CTA, yeah. I suppose at the time, we got to look at the fact that it was alcoholism was being blamed and everything else. So I wonder if that was an intentional blurring and maybe a creative decision again. But I think we deserve better, right? Yeah, and look,

Nicky 11:53

I do understand from a masculinity perspective, as far as the show kind of theme went that avoiding the acceptance or the symptoms of the brain injury are hard, and there were some camera angles that were good that showed the sense of confusion, you know, some of those dizziness and the loss of balance and all of those things that you first have to start adjusting to. So you can see some of the adjustment without the acceptance. But again, it was so hard to distinguish. Is is this alcohol related, or is it, is it brain injury related, or the intertwining of the two?

Shannon 12:36

Well, you can catch plum on ABC or an ABC eye view you're watching all in valid is the Victorian peak advocacy organization for adults with intellectual disability. They develop training, information and resources to empower people with disabilities who are often underrepresented and denied a voice in important discussions.

Nicky 13:05

We are joined by fionciotis, who is the CEO of valid welcome. Fion. Can you tell us how valid originated?

13:13

Sure. So valid was set up in 1989

13:18

at that time, a lot of people with intellectual disability in Victoria were in institutional settings or living in institutions. And there was a big push at the time to close those and to get people out of them into the community. So valid was really instrumental in lobbying for that to happen. And then, as it did happen, it became government policy in working at all the arranging, all the all the programs that enable people to get out of the institutions and into the community.

Adam 13:49

And speaking of that community aspect, why do you think people with disabilities need organizations like valid? Yeah,

13:57

I think it's to help them to have a voice. So I want to say help. We are mainly constituted of people with intellectual disability. Most of our workforce, we're a small organization, but we have about 45 people currently, I think, and most of them have a disability, and a lot of our work is geared at not speaking for people, but to transfer skills and build confidence and knowledge that enables people to advocate for themselves and to speak up for themselves. So I think we play a really key role. We have lots of different programs and projects, all of which are aimed at, as I say, giving people the voice, allowing them to advocate for their own rights, not to do that on their behalf.

Shannon 14:42

And why do you think it's particularly important for people with intellectual disabilities to be giving given the tools that they need to advocate? Look, I think people

14:50

with intellectual disability are often something of an invisible disability, and so they have, you know, particular. Circumstances and issues that they struggle with. They suffer discrimination. They're often left out of decision making, because the capacity to be involved in decisions is questioned. And so a lot of you know, historically, a lot of things have been done for people with intellectual disability on their behalf, and they've been left out of the decision making or making arrangements that affect their own lives. So as you're probably aware, there's big push in recent decades for people to say what they want in their life, to be given the tools and the knowledge and the confidence to exercise those rights and have a say. And Val has been a big part of that, and we continue to be a big part of that. It's critical that all people with disabilities, but including people with intellectual disability, are involved in the circumstances of their own lives. That's a basic human right, and

15:54

that's what we're about at Val would autonomy is so important. Absolutely, what type

Adam 16:00

of training does valid offer? Yeah, we have different

16:03

kinds of training. Some of it is for family members who have a family member but who does have intellectual disability. But most of it these days is for people with intellectual stability, and it's all about the skills in all kinds of different practical situations to be able to, as I said, exercise your right to control your own life. And some of that is around employment. Some of it's around different situations like health. And some of it is more general to do with living you know, living circumstances generally. The common bottom line is that, as I said, it's about people making choices, making decisions about their own lives, and equipping them with the tools and the confidence to be able to do that such

Adam 16:51

an important thing to have. Absolutely yeah. We

16:53

think so. Yeah.

Nicky 16:54

What do you hope will improve for people with disability, with self advocacy and the support of organizations like valued,

17:03

yeah, great question. Look, I think things have improved and are improving, but on the other hand, people with disabilities in Australia still face enormous challenges, I think, and enormous obstacles, and it shouldn't be that way. I mean, we could do a lot better than we're doing. There's lots of reforms being talked about as a result of the disability Royal Commission and as a result of the review of the NDIS, yeah, and that's Welcome to talk about change. But what we're really mindful of is how that changes is brought about, how it occurs, and the track record there, I have to say, isn't brilliant. You know, governments have a habit of saying, yeah, when it comes time, we'll, we'll co design, we'll talk to you. And then, for some reason, they don't, you know, decisions have been made. That draft bill is going up to the parliament and is being voted on. This is the way things are going to be, basically, and and then it comes back to our community comes back to people that, you know, that's what it is, and that's not how it should be. People should be, at the very least, consulted with, ideally right in there, at the where the decisions are being made and before that, where the alternatives to what the current situation is are being developed. So around things like, how are these new foundational supports going to work? They're a key reform. A lot of people are still in the dark. What will they be? How will they affect my life as a person with disability, and not just the information about that, but the capacity to get in there and have a say about what they should be, what they will be, of course, yeah, and that's just, look, there's bits and pieces of consultation, there's a little bit of talk happening, but I don't see a systematic effort on the behalf of any government in Australia, including the Federal Government, and government here in Victoria, to really involve people in the development of the new approach and to consult with them in a genuine way and to design a new system in a genuine way with people with disabilities. We've got a long way to go on that Fion

Nicky 19:08

at the end of last or this financial year just gone, a number of advocacy agencies lost all of their funding, which meant that they've had to close. That's put a lot of pressure, I imagine, on other advocacy groups. How has that affected? Valid,

19:26

yeah, it affects us. It affects most groups. I think

19:30

we have these systems in place in Australia, which are very time limited. They're very bits and pieces. You know, there are these well respected, well functioning disability advocacy organizations, and they're constantly having to think, where is our next fund? A bit of funding coming from? Can we go for that? Can we go for this? What about philanthropy? They spend half their time chasing these little bits and pieces of money. A better system would be to support them properly, OK, make sure they're run properly, make sure they have all the right governance for. Financial accountability, all that sort of thing. But when that's in place, fund them properly so they can get on and do their work, not spend half their time looking for the next dollar. And I see very good organizations being hit by funding cuts. I see others that are so, you know, so affected by these limitations that they're considering closing their doors. Others have had to lay off really good staff. I know that in valords case, as the end of the last financial year drew near, it was touch and go for us, where they would have to lay off our really great community development team. The ILC funded project was coming to an end. We didn't know if there was going to be another in the end. Right at the very end of the financial year, we were told, yep, okay, you've got another project, and we could keep our team on. So that's happy ending, but the members of that team could be under, you know, could be forgiven for walking away due to the uncertainty. Yeah, I don't know if I've got a job next month, so I'll go find one where I know I've got a paycheck coming in. So it's just not a great system. You know, there's and if we're replacing the ILC system, which I think is acknowledged to be quite flawed, with a new foundational support system, I hope that's also an opportunity to make the funding for the sector just much more reliable and predictable. It's really

Shannon 21:19

difficult. But look, valid does such an amazing job, and you know, it's been such an honor and a privilege to have the chance to speak to you today in the studio. Really want to thank you for speaking to us and carving out some time to let our audience know what your organization does and shed a bit of light on the difficulties that organizations such as valid are currently experiencing. So thanks for having me here. Thank you for your time. And if you'd like to find out more about valid, you can visit their website@valid.org.au

Adam 21:57

For those of you that have just joined us, you're watching all in where we focus on disability arts culture and the issues that matter to us. This week, we are reviewing Arts Project, Australia's brand new exhibition, bold

Nicky 22:14

for many disabled artists, merely partaking in the contemporary art world is a bold and courageous act

Shannon 22:21

in celebration of APA s 50th anniversary, bold highlights artists whose unapologetic self expression and instinctive practices give rise to powerful, confident work,

Adam 22:33

one of the things that I personally loved about it was being able to access it all online, which is such a great step for people that may not be able to access it otherwise. But I just want to put it to you, what did you think of both the fact that it's online and accessible there, but also the whole project itself?

Shannon 22:57

I mean, for me, the fact that it was online is probably the most important thing for me to take from this. As a person who is immune compromised and has long advocated for better online inclusion for people with disabilities, this is just honestly, it's the bee's knees. It made me so excited that something had been made accessible to more people through this, this methodology, you know, it's constantly shunned that we need to move away from online again because, you know, the lockdowns are over, and therefore it's not important. And I'm constantly finding myself having to remind people that not all people with disabilities can leave their homes. Some of them are actually still stuck in their homes. There is still an ongoing pandemic that's not spoken about, and so a lot of people are still playing it cautious and wanting to still access the arts, but they just can't do it because it's not brought to them. It's not where they're at. So this was just a breath of fresh air. I mean, it was just an amazing exhibition. It was really thoughtful, really well laid out, just even the layout itself was really, really nice, absolutely, and it was really pleasant to look at as well. And the way they captured that virtually, I was really impressed with how they did that so that you could really immerse yourself in the artwork as if you were there. I did access it virtually, as opposed to going in person. And honestly, I really did feel like I was there. It was really well executed, yeah? And,

Nicky 24:28

you know, so easy to get the information so you're not having to scroll back somewhere else, yeah, you can. It was just so easy to use. And you know, I don't want to say it was just joyous, like, you got a lot of the sass as well. There's lots of layers. It was such, I'm really impressed with bold, yeah. I

Shannon 24:49

mean, I see Sass is a bit of joy. Anyway, I always think being sassy is joyful. So for me, you know, they kind of do correlate. But, yeah. I mean, what do you think one of the

Adam 24:59

things. I really loved about it. There was one of the exhibitions that had, like parodies of famous that was so great to see, like a different perspective of existing art pieces in that joy

Shannon 25:17

reinterpretations, yeah, I loved that piece. That was fantastic. Yeah, yeah, yeah. To catch the bold exhibition, you can go to www.artsproject.org.au

Nicky 25:33

disability representation is so important to us. Yeah,

Adam 25:36

that's so right. Having our voices heard matters

Shannon 25:40

we want to thank our special guest magnets for joining us, and Fionn ski Otis from valid I am Shannon, I

Nicky 25:49

am Adam, I am Nikki. And you have been watching all in to find

Adam 25:54

out more info about all in visit Powerd dot media, see

Shannon 26:00

you next week, because When it comes to all in everyone is invited.

26:05

You.