Attitudes - about disability - episode 1

Angel 00:02

Welcome to the Attitudes podcast. This podcast is the brainchild of Attitude Foundation and Northcott to chat about attitudes about disability. In 2021, the University of Melbourne published a nationwide survey on Australia's attitudes on disability, which will be the focal point of our season one.

I'm Angel Dixon, your host. I'm a person with disability. I dedicate my time to furthering the inclusion of people with disability. I'm a model and the former CEO of the Attitude Foundation. In an effort to bring life to the numbers in this survey, each week I'll be joined by current and former board members and one friend of the Attitude Foundation to discuss one of the survey's findings.

Today, I'm joined by Emily Dash and we'll be discussing the topic that 78% of people agree that people are unsure of how to act around people with disability. Welcome, Emily.

Emily 00:52

Hello Angel. Thank you for having me. I really appreciate it.

Angel 00:56

And I'd love Emily if you could introduce yourself before we get going.

Emily 01:00

Absolutely, so my name is Emily Dash, I'm a writer, actor, producer across theatre and screen and I am very proud to be on the board of the Attitude Foundation as a director.

Angel 01:20

All of our board members of Attitude Foundation are all across Australia, but today I am in Queensland on the Gold Coast in the land of the Yagamba people.

Emily 01:30

I am coming to you from Sydney, New South Wales and on Gadigal country today.

Angel 01:38

Emily, today I was hoping that we could dissect one of the survey topics that I guess is close to all of our hearts, but I imagine you have a lot to say about this particular topic. And the topic is that 78% of people agreed that people are unsure how to act around people with disability. The first thing that strikes me is it's a very, very large number. Is it shocking how large the number is or based on your life experience do you find it not surprising?

Emily 02:14

It's not at all surprising. I wish I was more surprised. I think lots of people are, as a person with disability, lots of people have always been unsure how to approach me. And I think the key with that is people haven't had much exposure to people with disability.

Emily 02:38

So rather than risk saying the wrong thing, they, you know, put me in a box, not literally of course, I've never been put in a box, but you know, they make assumptions. And that can be anything from asking intrusive personal questions to invading my personal space to outright exclusion and discrimination.

Emily 03:15

And the ramifications of that, I think it's important to say can range from sort of mildly annoying to devastating and unfortunately in some cases even deadly. For example, personal questions that I get asked, how do you have sex or what happened to you or what's wrong with you or those kinds of things.

Emily 03:53

It's just not anybody's business. The other one is invading personal space, certainly things like people just reaching out and touching my hand or if I'm in my manual wheelchair, pushing my wheelchair without asking me or trying to give me a hug or, you know, when I don't want one, people get very sort of touchy -feely, I think, with people with disability sometimes.

Emily 04:31

And consent is a huge important issue. The way that I like to talk about it is that our bodies, our minds and our lives as people with disability are constantly up for discussion. So, we talked about, but we’re never really talked to. And the problem with that is when people say things about us or think things about us without our consent or our participation, then they get it wrong.

Angel 05:15

I love how you've phrased that, that we're always talked about but really talked to. But it's interesting because when you are spoken to, it's either inappropriate or it comes at a time that it's not wanted. In those uncomfortable interactions that you experience, Emily, is there anything in particular that you could tell people how to resolve those interactions?

Emily 05:45

Please don't be afraid to make mistakes. And I think when you're thinking about how to act around people with disability, I think that the simplest, most practical advice I can give you is just to ask them and just be open about just say, you know, I want to do the right thing here, but I'm not sure what that is. I don't want to be offensive or anything, but, you know, I'm just wondering, you know, will you help me? Will you tell me what you need? And most of the time people are gonna be more responsive to that than to you just jumping and making a wrong decision.

Angel 06:48

That's so important. I hear from so many people in my other work, which is a researcher around disability stuff, that people really just want to be acknowledged before anything else. So there are so many people with disability out there that talk about saying hello first before saying what's wrong with you. And even that slight tweak in acknowledgement makes someone more open to a conversation. I wonder how you feel about that.

Emily 07:29

Yeah, absolutely, and more likely to respond to the question that you actually want to know.

Angel 07:39

There are a lot of colloquialisms, maybe that's not the right thing, but in Australia there are a lot of phrases that are just part of connection and community that unfortunately come across very badly for people with disability like, oh no, what's happened to you? Or, you know, those kinds of comments. Would you say they need to go out the window? Or would you say they're okay?

Emily 08:10

Lots of people have different views on this and very strong views on this. I think that as much as possible, we should try to remember to be conscious about our language, but as with anything, people trip up and make mistakes. I'm not a big fan of the cancel culture. I think it has a place, but I think it can be problematic. I'm a pretty open person and I think most people are open to people who can see that you are trying to muddle through things, because we're all just muddling through life, right?

Emily 09:15

And no one gets it right all the time. No one really knows what they're doing. So if you can just meet us in that sort of space, you're more likely to have a more authentic and comfortable interaction that will hopefully start you on a journey to becoming less uncomfortable.

Angel 09:39

That's so, I'm having, you're blowing my mind right now, Emily. I'm piecing all of the things that you've said together and thinking that we do talk about these interactions as a very one-sided, maybe othering experience, like it's the person with disability against the person without disability and the whole connection happens when we can recognize each other in that experience.

Emily 10:06

Absolutely and like I'm an expert in my own personal experience of disability as you say but in regards to other people's disability I try to do my best to learn and educate myself but I make mistakes and are unintentionally ableist towards people and what you do is you acknowledge that you don't make a big deal of it you try to repair the damage and you move on.

Angel 10:37

I'd love to hear your take on why you think those attitudes exist and why you think going back to this survey finding that number is so high.

Emily 10:50

I certainly think that there are other contributing factors. I think that probably a lack of exposure is the biggest one. I think once you have exposure, you might not get things right all the time. But you at least have some prior knowledge to lean on. I sort of tout that by saying that once you know one disabled person, you know one disabled person.

Angel 11:20

You don't know all disabled people.

Emily 11:22

So that's another issue but I think that another issue which is sort of related is the lack of representation of disabled people or people with disability that we see in the media because you know as we like to say if you can't see it you can't be it and if people don't see people with disability in the sort of front and center then of course people gonna think that we're difficult to deal with or scary or overwhelming or whatever the case may be.

I think there's another thing that happens where people confuse experience with disability with living with disability. So with the experience of disability from my perspective is the fact that I am a person with disability who comes up against attitudinal or other barriers every day my parents for example have lived experience of being parents of someone with a disability which is a completely valid perspective and it's a very important perspective that needs to be addressed alongside but it certainly is not lived experience of disability you know the same goes for people working disability support sectors or education all of those perspectives are completely valid as long as they are complimented at some point at least by the lived experience of people with disability so yeah I think that conflation can be an issue sometimes where people get misinformed.

Angel 13:43

And how do you think that those two things being conflated quite often, how do you think that plays out in day-to-day life? When you're in those interactions where people are coming to you and they're confused based on the survey again, how do you think that filters down the line?

Can you almost tell, because people with disability have a really fine-tuned lens, I feel like I can almost tell how someone's perception of me has been developed over time by them just saying one single phrase or doing something inappropriate. It's like I can see how exclusion has, or you know, historical legacies of disability have come through the line down to them and it's presented to me in that moment.

Emily 14:35

I think a lot of these attitudes that we're talking about originate from good intentions. A lot of it starts from very early on, say if children are born with disability and very well -meaning medical professionals or such, diagnose them in terms of what you can and can't will or won't be able to do. Those attitudes can be, as you say, fed down the line. I think organizations that work for with people with disability have a great role to play in some instances, but also by their nature sometimes rely on the barriers that people face personally in their daily lives and when that gets presented to people, they think that is the dominant narrative. And it can be, but there's also a plethora of things that people experience alongside that. I like to say, you know, life with a disability is hard.

Emily 16:08

I know as a person with high care needs, that life with a disability can be very, very challenging. And I think it's detrimental to try and wash over that, which I think sometimes we do. But I think there needs to be space for both what is essentially trauma of having a disability and constantly coming up against social barriers and joy, because these two things can coexist.

People with disability have very, very joyous lives and we would have significantly less challenges if those attitudes would change.

Angel 17:03

It's so important. I mean, the work that we've been doing at Attitude within media, which we hope extends into daily life, like you've discussed, but the work we've been doing is to try and change those media portrayals of being really polarized from either being total victims or complete inspirations and bringing it to a more balanced place of we are real people with a diversity of life experiences and emotions and all of the things that everyone has.

Emily 17:41

And that's why I'm very sort of conscious about all the organizations that I work with and for, whether that be Attitude or any of the, you know, any of the things that I do, I make sure to only work with people that understand that duality of experience, that yes, there can be challenges, but at the same time, there's also joy and hope.

Angel 18:14

I'd really like to lean into the joy and hope just for a second. I know you apologized for being too deep, but I like the deep bits. Can we lean into, I mean, if we go to the philosophy of life, that real philosophical idea that life has to be light and shade, because otherwise without one, we wouldn't know the other. And I wonder what that means to you as a person with disability when you're talking about joy and hope and all those things.

Emily 18:48

Well, it's funny. I have a saying that I'm kind of known for and it just sort of organically happened one day when I was at the theater. I was with a friend and she, we wanted to get ice creams in the interval of the theater show and I just forgot that feeding someone can be very difficult without making a very big mess.

Angel 19:28

Particularly with ice cream, there's a time constraint!

Emily 19:34

So we were laughing and trying madly to, you know, clean up everything before the lights went down again. And my friend, Julie, she said she admired my determination in eating the ice cream just because I was like, oh, you know, I'm just gonna go for this and love it. And I, so randomly, philosophically, I said it was kind of like my life. She said, what do you mean? And I said, life is like eating an ice cream. It's often difficult, sometimes messy, but always enjoyable if you know where to find the sweetness in it.

Angel 20:24

I think there's your memoir right there.

So coming back to the survey, I love to hear people's theory of change based on their experience of the barriers and the enablers that they experience in their daily life. What's your personal theory of change? Does it mesh with attitudes theory of change at all?

Emily 20:54

I'll start with my personal theory of change because I think you'll find that it matches up with what we do at Attitude. I just really think that disabled people having the opportunity to take up space and to be seen and heard and to define themselves on their own terms is important to change and I think the media and storytelling has a really important role to play in that because I think storytelling and authentic inclusive storytelling is a way to break down barriers and enable people to lead the lives they want to lead and I think that challenges, stereotypes and is a really great place to start.

Emily 22:15

When people are moved or entertained, they're far more likely to be open to ideas that might be challenging or confronting I've found in my experience so storytelling is a really great non-judgmental non-confrontational way to do that.

Angel 22:43

And getting down into the nitty-gritty of that, given the work that we do at Attitude Foundation, how do we do that? So changing the narrative, I guess, is just one part of accessibility and inclusion in media. How do we do that?

Emily 23:02

I think just by providing opportunities, providing pathways for people to do what they want to do, I think is an important place to start.

Angel 23:18

And have you found that there have been barriers to you along those pathways?

Emily 23:25

Yes, as I have sort of mentioned those attitudes are not only just in my personal life but in my professional life as well so that you know I'm nearly in my 10th year of professional practice and I'm still having to go on to projects and spend quite a lot of time proving my worth and my ability to make a contribution and make value, creative decisions…

Angel 24:11

Gosh, Emily, your value is incredible and anyone would be lucky to have you. Can you imagine how much more impact you would have if you didn't have to go through that rigmarole every time?

Emily 24:23

I have to make it clear and say this is not every project I've worked on but there's still a long way to go till people just accept that I'm an artist in my own right. Particularly people I've never worked with before.

Angel 24:43

I guess, you know, some people would be listening to this as a person without disability and go, well, that's true of any job, you know, you sort of have to prove yourself. But we go back to those attitudes and we go, no, there is this layer of, you know, messy stuff that's on top of that generalized, this is a new job I need to prove myself.

Emily 25:06

But if you're dealing with people with disability in the arts, I think there's a place for the arts in terms of therapy and recreation and the, you know, the benefits that it can have for people. I do think I've seen that be really beneficial. But I think that people look at all participation and contribution to the arts by disabled people through that lens. And so if someone sees me on a film set, they're likely to go, ah, isn't that nice.

Angel 25:53

Emily, this has really reminded me of an experience of mine. And I feel like I have to share it right now. So for those who are listening who don't know, I was once a model and I was participating in, it wasn't LA, it was Melbourne Fashion Week. I'd gone down to Melbourne for Melbourne Fashion Week and we were in the makeup chair doing my makeup, getting ready. And the lead makeup artist came over to me and tapped me on the shoulder and said, wow, this must be such an experience for you. Are you excited?

Angel 26:37

And I was like, well, you know, it's it's not as exciting as LA Fashion Week. There was certainly more involved in that, but you know, the fashion this year is kind of exciting, I guess.

Emily 26:52

Oh my god, that's so good, and I also just love your response. And so, yeah, that's exactly what I mean. Obviously, all people have to prove themselves in new jobs, but there's almost an added layer to that that we have to break through.

The way that I should have said this at the outset, the way that I look at it, is that disabled people have to work twice as hard to be seen as half as good. Yes, and I'm very good at my job. I'm not a modest person.

I'm good at my job, and I will be very excited for the day when I don't have to spend ages and ages convincing people that I am good at my job.

Angel 27:57

I think, honestly, your work speaks for itself and the more we can get you out there, the sooner that will happen.

Emily 28:05

Forgive my immodesty but sometimes you just have to, yeah, for the sake of being free.

Angel 28:13

Thanks for joining us. This has been the Attitudes Podcast. If you'd like to learn more about the survey, visit the University of Melbourne website or head to the Attitude Foundation website for more information on us.

Angel 28:28

This podcast wouldn't have been possible without Matt Field from the Attitude Foundation and Alex Varley from Northcott, hosted by me, Angel Dixon, produced by Lucy Griffin and edited by Simon McCulloch and Evan Munro-Smith.