Emerging Voices LIVE - Models of disability, advocacy and music

SYN ID 0:00
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Freya 0:30
You're now listening to Emerging Voices on SYN with Freya, Sundara, Zach, Rowan, Jacob and Beck. On today's show, we're talking all about how we think about disability, how that thinking differs about... by culture and generation, as well as the different models of disability, a guide to self advocacy and different ways you can get involved with campaigning for yourself and others, how we have seen the community represented in the media industry... and finally, music appreciation. Coming up next is Take Me Home by AB Original. (BRIEF MUSIC) 

That was, take me home by AB Original, Hi, I'm Freya, and you're listening to Emerging Voices on SYN. To start the segment, I went around and asked people at RMIT what they think about disability. (On location:) What does the term disability mean to you?

(unknown speaker, male 1) 1:22
Disability, just... not being able to do certain things.

(unknown speaker, female 1) 1:27
Growing up, I probably thought of it as something that was negative, but so I just think of it in a more... as an umbrella term for so many other things now.

(unknown speaker, male 2) 1:37
Everyone, per se, have limitations, but however, have different powers - superpowers, I would say, than other other people would have.

(unknown speaker, female 2) 1:48
I just feel very [?] or limited ability in any form. It could be like physical, mental, emotional

(unknown speaker, male 2) 1:58
And I believe that... I'm always not focused on negatives, but I was more on the positive side, like what there's hidden talents now so that every people with neurodiversity have.

(unknown speaker, female 1) 2:10
But I think now I've kind of been blessed with having relationships with people who have disabilities now as well. And I kind of don't really think anything anymore, like I kind of just... they're just a person.

Freya 2:22
My support worker and I wrote a shopping centre in 2021 waiting for a lift. It turns out it had broken down. There was a lady already waiting there, and she told me that the technician was on the way. Neither myself nor the lady could use the stairs. I'm a wheelchair user. And, as she informed me, the lady was waiting on a knee replacement that had been put off four times due to COVID lockdowns. It was obvious the lady was having a hard time and needed to vent, so we listened to what she had to say. Her husband recently died of COVID. She had been unable to see her grandchildren since 2019, as they lived interstate and overseas. 

She was finding it increasingly hard to walk, and today she was unable to get one of her medications, as is part of it was a part of a national shortage. Objectively, her life was hard. We talked until the lift was fixed, caught the lift downstairs together, and when the doors finally opened, letting us to continue one of our lives. She turned around, looked me up and down and said, Well, who am I to complain? It must be much harder to live your life. I don't think I could live with a disability. 

I can remember this moment vividly, not really because of what she said, but by what it meant. Why do we see disability this way? Why is my life, a life she knew nothing about, somehow viewed as being tragic? Most importantly, where do our ideas of disability come from? But more than this, what has stuck with me is that, technically, this lady had a disability too. She had mobility issues, faced barriers of physical access and an access in a medical system. But to her, disability was something separate, something worse, something that belonged to people like me. 

This is why the way we think about disability is important. Our views on disability are shaped by our personal experiences, history, culture and society. On this segment, I will discuss how we categorise different ways about of thinking about disability, called models of disability. I'll touch on how perception of disability can be different across cultures and generations, and discuss how language shapes the way we think about disability. Firstly, I wanted to discuss the medical model. Here is a clip from Sam Drummond speaking to his experiences as a young person with disability receiving medical care.

Sam Drummond 4:44
The when I was going for surgeries, they used to break my legs to straighten them in an attempt to get me to walk which which was successful. But looking back on it, you have to ask, Was it worth it?

Freya 4:56
So the medical model focuses on medical treatment and cures. Like in Sam's story, sometimes the focus can be so much on making someone as close to the norm as possible that other things can be forgotten, like in Sam's case, he's pain. This model can help with medical advancements and treatments for unpleasant symptoms. But for disabled people, this way of thinking can make us feel broken and like we are not right for society. The next model I wanted to discuss is the charity model. Here is a quote from Sally Young speaking about the issues of the charity model.

Sally Young 5:30
Yeah, when people in wheelchairs come to school, they usually say, like... inspirational stuff. (LAUGHTER) Yeah.

Freya 5:39
charity model assumes that people with disability need help from others. Disabled people are seen as a source of pity, or, in Sal's case, as inspiration. Historically, disabled people relied on charity to be able to access supports. The charity model can make it difficult for disabled people to have control over their own lives, and it also concern to the person out of disability, for doing good. The next model I want to discuss is a social model. Here's Stella Young again.

Sally Young 5:40
Life as a disabled person is actually somewhat difficult. We do overcome some things, but the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term disabled people quite deliberately because I subscribe to what's called the social model of disability.

Freya 6:27
The social model says that it's not disabled people who need fixing, but society. It challenges the medical model in doing so. Disability and accessibility is the responsibility of all in society. It's not just the responsibility of a disabled person to fit in. The social model says that barriers in society are what disables people the most, and society needs to focus on removing barriers. 

Lastly, I wanted to touch on the human rights model of disability, which says that disability is a natural and important part of society. Society is responsible for meeting everyone's rights, including disabled peoples. But removing barriers, as suggested by the social model, is not enough. We need to focus on long-term inclusion and change for all people in society. These are just some ways we think about disability. How we think about disability can be influenced by many things, including our culture and age. 

You may have noticed that during this segment, I have used the term disabled. This was deliberate, just like Stella, as I use this term rather than person with disability to refer to myself - as I see my disabilities as being integral to my identity, I started calling myself disabled as I wanted to practice not feeling ashamed of my disability anymore. Other people prefer different language for lots of different reasons - which is great. In this way, the words we use when speaking about disability also impacts upon how we think about it. 

To close out this segment, here's an interview with fellow emerging voices presenters, Sundara and Zach, talking about how they think and talk about disability. So I'm here with Sundara and Zach from Emerging Voices - to discuss more about how they think and talk about disability. Sundara, I know you prefer person-first language. Could you explain this for us?

Sundara 8:20
Sure, Freya. I prefer people who are living with the disability instead of disabled people, because I think it's more of a first person-centred than the disability... centred on the disability itself.

Freya 8:39
Awesome. Thank you so much. And Zach, I know you feel we need to talk more about invisible disability. Can you explain why this is important?

Zach 8:47
So yes, I feel that kind of acknowledging invisible disabilities is pretty important, because most of the time when we think about disabilities, or we we perceive disabilities, it's more often the visible ones that the bones we can see immediately, and that often means that we sometimes do tend to have bit of judgment when it comes to people that we perceive do not have disabilities as grants, and then we might kind of have our biases and judgment that stems from there. I think it's really important to kind of educate people on how... people can have disabilities that are not readily invisible to you, and [?] just reserved. We should reserve our judgment. Yeah.

Freya 9:29
I'm Freya, and this is emerging voices on sin. The next song is, They Weren't There by Missy Higgins. (BRIEF MUSIC)

You just heard They Weren't There by Missy Higgins. You're listening to Emerging Voices on SYN. I am Beck, and I am a disability advocate. I'm here to talk about how to start self advocacy. One thing you need to know is your rights. So understanding your rights is this first thing you need to do, contact your local self advocacy group. You can look them up on Google by doing a search. There are many self advocacy groups in Victoria. To name a few, Rainbow Rights Advocacy, Reinforce, Brain Injury Matters and All Abilities. 

I am the representative for All Abilities, and we are based in Warrnambool. If you'd like to join our group, we have our contact details on Facebook. Just type in All Abilities Advocacy. We do self advocacy training, we host meetings twice a month in Toorang, Portland, Warrnambool and Hamilton, twice a month, from 10:10am, to 12pm. You could also watch video, videos around self advocacy. There are self advocacy videos on YouTube that talks about advocacy and also how to how to do training in self advocacy. 

And now a bit about campaigning, you can campaign. You can do campaigns by putting up the story on by using social media like Facebook or YouTube into campaigning your story... or you can contact DARU. Their contact details just start typing in in Google DARU, and they can also help you... campaign a story, your story. If you want to find out more about self advocacy groups and how to contact local self advocacy groups and learn about training and stuff, you can go to the Voices Together website. Just type to Google voicestogether.com.au - and all the information advocacy groups and training information and contact details are all on their website.

Thank you. Okay, next, 9 to 5 by Dolly Parton. (BRIEF MUSIC)

Sundara 11:50
You just heard 9 to 5 by Dolly Parton, which is a good song and a very appropriate song for my topic today. You are now listening to Emerging Voices on SYN with Sundara on today show. We are talking about representation of disability in the media. People living with a disability should have more opportunities in the media. There are currently journalists with a... living with a disability within... the ABC network, people living with a disability should have opportunities in the technical roles as well... more representation in fictional media and storytelling as well, like Bluey, Play School, for example, there is very nice episode called Twitter Boy, which is a Bluey episode. And there's a show by Ellie Mae Barnes called Headlines, also listening to a story by Freya.

Zach 13:02
Okay, so you are happy with Freya to discuss her experiences at the workplace.

Freya 13:07
Thanks, Zach. So... I've had some really good experiences working, I've had some really... unfortunately negative experiences working. I think it can be really hard to ask for accommodations. And I have both visible and invisible disabilities. I'm a wheelchair user, and I do need some help with things like a proper setup at home, and some... I've, sometimes I find that those things are a bit easier to explain than my needs for my invisible disability, where sometimes I can change from day to day, sometimes I might need more breaks or more time to be able to cope with what's happening. 

So I think accommodations can be a thing that can be really hard to work out as a disabled person working, and I found that there's not a lot of help out there. One workplace that I found has been really accommodating, and I've learned a lot about how to work, is, has been like I work in research as a lived experience consumer research partner, and I found that they really valued my input and checked in with me regularly about what it was that I was needing, and they were okay with the fact that that might look a bit different from week to week. And that has meant that I find that I actually do really good quality work when I'm supported well. 

And it's meant that I've been able to take that into other settings and explain what I need, and that when those things are met, I can actually produce, you know, really good quality work that I'm... I think, you know, my experiences as having lived experience of disability has actually made me better in a lot of those jobs, because I have that perspective. So, yeah, I think it can be really difficult. But when you find... someone or like an organisation or workplace that can support you to figure those things out and support you to work out what you need to work your best, it is well worth it.

Sundara 15:12
Come up next is What I Like About You, by the Romantics. (BRIEF MUSIC)

Rohan 15:20
You just heard What I Like About You by the Romantics... you're listening to Emerging Voices on SYN with Rohan and Jacob. We're going to interview each other around music we enjoy, and our different experiences as music fans. Jacob, what's your favourite type of music?

Jacob 15:39
I do like pop, country or [?] rock, but mostly I love just listen to like pop rock music.

Rohan 15:47
Okay, pop rock music. What does that sound like?

Jacob 15:50
Just love the mix of, it's just a mix of pop and rock.

Rohan 15:53
Okay, so about how long have you been into it? For a while? Yeah, I've been into my favourite band for a long time now. That's Def FX, for the last... oh, 30 years, almost. So favourite bands can last a while. What's your preferred medium? CDs or vinyl?

Jacob 16:12
Oh, just, mostly, just listen online.

Rohan 16:14
Okay, so I'm wondering... do you go to nightclubs at all?

Jacob 16:18
I have not been to a nightclub.

Rohan 16:21
Really? Not at all?

Jacob 16:23
They're kind of noisy. And... do you have any music DVDs? I've got a few.

Yeah, I got a couple as well. I think I got about... 55.

Unknown Speaker 16:34
Wow, that's a lot. Again, is it like pop music, another type of genre?

Jacob 16:39
Just a mix of music, but 26 of those CD are country-related.

Rohan 16:43
Oh, right, wow. So would country be like Dolly Parton or Emmylou Harris and things like that, or...?

Jacob 16:50
Yeah, like Slim Dusty, Kevin Rosa, Johnny Cash...

Rohan 16:56
Yep, so a lot of those bands feature line dancing. Do you dance at all?

Jacob 17:03
Ah, no.

Rohan 17:04
Okay... I just wonder whether you catch a lot of trams and trains, like public transport?

Jacob 17:12
I do a mix of both.

Rohan 17:14
Yeah, I just ask, because wondering whether you use headphones on public transport.

Jacob 17:17
I... don't use any headphone because I got no Bluetooth headphones.

Rohan 17:25
Okay... and just with TV shows. Did you ever watch Video Hits or Rage?

Jacob 17:30
No.

Rohan 17:31
I used to watch Rage all the time and end up losing the whole next day because of sleeping the next day. So it's kind of addictive. Dude, and do you play an instrument?

Jacob 17:40
No.

Rohan 17:41
I'm still always learning to do that too, and I think we'll throw to the whole Emerging Voices team, to pitch in and talk about shows and events that they've found to have positive steps towards accessibility.

Zach 17:56
Yeah, I recently went to a cyber security focus conference. And there were, it was quite grounding, because it was a big conference hall, and there was a quiet room available for those who wish to take a bit of a break from northern waters kind of wasted. There was water that was good for you once... very good. And overall, I think it was accommodating.

Sundara 18:21
So I've been to many disability expos. I find the [?] because when there's a person there... to be able to you can ask them where, where their place now, and so on.

Speaker 2 18:40
right, last year I went to the port industrial complex. It's all in one level, so there's no thing upstairs or anything like and the stage was quite high, and you can see really well. So I think it just accommodated everyone very well at the venue.

Freya 18:59
Yeah. Well, I went to Green Day recently, and it was great to see that there was a chill out sensory space that people could go to when it was, you know, too loud or overwhelming. And I found that that was really useful time,

Speaker 1 19:11
that one where I may freak out a little bit once, and it just was a little bit overcrowding and cause I have high anxiety, I had to get out because just too much, because greatly agreed that I had that because of the long papers I've been to. Never have that natural my anxiety... [?]

(unknown speaker) 19:40
Coming up is Electric Avenue by Eddie Grant. (BRIEF MUSIC)That song was Running Underwater by Eliza Hull. This has been Emerging Voices on SYN. Thanks for listening and goodbye. (ALL" Goodbye, yay!)

Freya 20:02
Coming up next is Rising Phoenix by a group of disabled artists written for the documentary on Netflix by the same name. The song mentions some common misconceptions about disability, and I would encourage you to listen. (MUSIC, fading out: There's a young boy walking through obstacles, cut up from minor surgery.....)