Making the invisible visible: Disability representation that matters with Simone Eyles

Laetitia: Welcome to Neurodivergent Pulse, where we explore the often misunderstood world of neurodivergence with experts, parents, teachers, and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host, Laetitia Andrac, AI expert, neurodivergent mum, and founder of Understanding Zoe.

Laetitia: This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was, and always will be Aboriginal land.

Laetitia: Hello, Simone. Thank you so much for joining Neurodivergent Pulse Podcast.

Simone: Thanks for having me, Laetitia. I'm really excited to be here.

Laetitia: It's always a joy when I see you. We always have, like, this kind of beautiful connection, and we've never met in person. We've only met online. Oh my goodness, we haven't, have we?

Simone: No. We will meet one day, yeah.

Laetitia: Yeah, we will. It will happen.

Simone: It will happen. But it's been a few years since we have been following each other's work, you know, from my previous business, and I've always been a fan of what you're doing with Disinfluencers.

Laetitia: So before we start the interview, I just want you to share about Josh and the billboard you crowdfunded with his face on it, and the line, "I would buy from him," which is a beautiful piece of marketing. So can you take us back through the moment Disinfluencers stopped being an idea in your head and something that you feel like, "I had to build it," and what part Josh played in that?

Simone: Yeah. Okay, so I can remember the exact moment. So Disinfluencer was just a podcast, and it was called something completely different, and I wanted to have a conversation. As you know, I had a previous life. I had a tech startup and all of that, and what people didn't know is I had that business because I accidentally created it because I couldn't go to work anymore because I had Josh, who is Autistic, intellectually disabled, and he's also had a kidney transplant.

Simone: So he was a very sick baby. So, I have a marketing background. I've got a degree in graphic design, and I always hear, and everyone will know this, you hear disability in the media through a lens of advocacy, especially now with all the NDIS changes and neglect and abuse and whatever. And those stories are valid and important, but where's the light to that shade?

Simone: So there was a conversation from Hannah Diviney. I don't know if you remember. She called out Lizzo and Beyoncé for having some ableist lyrics.

Laetitia: Oh, yeah. I remember that.

Simone: And that, that sparked,

Laetitia: Yeah.

Simone: a conversation in me because I'm like, "Why is the news always about this?" And so I started this podcast, and I started having this conversation, and then I guess, you know, like The Alchemist says, the universe will support you.

Simone: So, I had Jane Kaye, who is the founder of Birdsnest, in my car park when I was living down the far South Coast. Birdsnest is based in Cooma, and she was in my car park, and I'm a big fan of Birdsnest, and I literally jumped on her, and I'm like, "Hey, you know, why don't you have any kind of diverse talent models?"

Simone: And she said, "Well, we'd love to. Like, how do we do that? Where do we do that?" Now, in all fairness, Birdsnest already had, like, an accessible website. They were already doing the things. And then, so we did a shoot for Birdsnest and another brand, which was very, an incredible experience, and I started talking to more brands and asking that question.

Simone: I'm like, "Where is your diverse talent?" And the brands would be saying to me, "Well," where do we go to get them?

Laetitia: You're right.

Simone: So that's when Disinfluencer went from, like, I'll create some content because I wanna see that, I would buy from him, back to the billboard, to, you know, you can't be what you can't see.

Simone: And I feel like as a mum, I don't see my kid or my family represented in any media or marketing or advertising or the news. And I obviously have that background. And yeah, the billboard was supposed to have Katie, in it, who was featured in the Birdsnest campaign. Katie is a young woman with Down syndrome.

Simone: She's my friend's daughter, who loves fashion. And what I find is not only do we not have the representation, but if you do see someone with a disability in the mix, they're usually on the outside, like they're kind of tacked in on the side. They're not the hero of the campaign. So the billboard was all about putting disability front and centre, and speaking to, you know, a segment of the market, a massive segment of the market that is literally ignored in media and marketing.

Laetitia: Mm. Thank you. So inspiring. Thank you for sharing that. I love how you started from a personal story, but then opened it to the whole community and really impacting positively the whole community. As we know, like one in four are disabled, and indeed we don't see any of them in the media, in the representation, or sometimes it's a bit tokenistic.

Laetitia: It's like, oh, we put this one,

Simone: Yes.

Laetitia: as you said, you know, in the corner or at the back and so on. So, yeah, and on top of that, 96% of disability are invisible. So,

Simone: Mm.

Laetitia: most disabled and neurodivergent children grow up never seeing themselves and, as you said, their family and all of that. It's, like, really interesting how we could see greater supermarket catalogues and school campaigns and, you know, cereal box or holiday ads, having disabled individuals.

Laetitia: And I know that through our own journey we've been invited to some events within the disabled community, and I love how my daughter get exposed to all form of disability. And,

Simone: Mm.

Laetitia: unfortunately, if you don't grow up seeing this, this is where ableism exists, right?

Simone: Yes.

Laetitia: It's really,

Simone: Yes.

Laetitia: so, I love that.

Laetitia: So from where you see it, because I started, like, giving my sense around from where I see it, not having this diversity being visible, but what is the actual cost of this invisibility for the child and for the parents raising them?

Simone: I think the biggest thing is that someone with a disability doesn't sit in a silo.

Simone: They belong to a family and a community, and I always think about my daughter, and she's, she's eight, and she has,

Laetitia: She's so,

Simone: She has empathy and she has understanding, because it's normal in our house. And I guess, I really hate that word, but I guess when you deal with disability, especially like with Josh, for example, like Josh has always been a very sick kid.

Simone: Like he's got a major. He's currently in organ failure and having dialysis. He's got a Port-a-Cath in his chest. He's had a kidney transplant. He's covered in scars, but you don't see that. And back to that invisibility with his neurodivergence, you know, he's got, I'm gonna say, weird but normal eating habits.

Simone: And yeah, so I think, I always talk about Josh and his love of meat pies and eating meat pies. Now, from a marketing point of view, we see meat pies marketed as at the footy, I'm air quoting, at the football, at sports. Now, our family, we don't do sports, because of all those reasons. And I can tell you right now, I have bought enough meat pies to fill seven stadiums and feed every person in that stadium with a meat pie, but I have not seen that marketed.

Simone: And I guess for the neurodivergent community, and to answer your question from a commercial point of view, there's brands and products, and people with disabilities are consumers like everybody else.

Laetitia: Yeah.

Simone: And no one is marketing to them, and I see that as a huge gap and a huge opportunity. And I guess I talk about the meat pies and the food, for example, is I'm trying to take disability mainstream. Everything you said about the ableism and if you aren't exposed to it now, if we have the big brands being accessible and inclusive and having representation, not as tokenistic, but as like purely led from curiosity and inclusion, we will see a change because they have massive influence in pop culture.

Simone: So that's kind of what I'm doing. I'm trying to really go top down, just little old me over here. But it's working. We're getting cut through and I, again, I was always shocked and when I do get the opportunity to pitch or present to a big brand, they are curious and they are saying to me, "We want this.

Simone: We need this." And they're scared. They don't know what to do. They don't know what to say. And I'm like, "Well, I'm the mum, so I understand that bit and I understand the marketing and the business bit, so come to me and let's do the thing and make it happen."

Laetitia: You know what? Let's have this big ask energy. If anyone is listening to this podcast and you know of a big brand that is safe food for your child, just go, and or is safe food for yourself and you identify as disabled, just kind of reach out to them and connect them with Simone.

Laetitia: It's like we want to see, you know what you said about the meat pie? For us it's a cheese stick, and for some people,

Simone: Mm.

Laetitia: it's a nuggets, and for some people it's like, with feeding differences, we have those safe food which are really part of the day-to-day and a must,

Simone: Yes.

Laetitia: in every single lunchbox, in every single meal, and we don't see that representation.

Laetitia: So that's such a good point and such a big inclusivity angle that needs to be taken rather than, you know, just sprinkle and, oh, let's put one image there, and then we feel good. So let me just move through the, actually the fact that you're not just advocating for inclusion, you're actually building infrastructure.

Laetitia: You have the stock library. You have the talent roster, and we actually used one of your beautiful talent for a campaign with Understanding Zoe. You have the agency arm. Like, what was missing and that you've learnt through your experience, your lived experience as Josh's mum? What is the kind of thing where, you know, it's like with Understanding Zoe, no one else can build it the way I built it because it's coming from my own lived experience.

Laetitia: What's coming from your lived experience and what have you learnt from one another with Josh and your experience?

Simone: Yeah, great question. So like I said, it just started with a conversation. I wanted to have a conversation about, you know, where are the good, positive, like, white, fluffy news stories.

Laetitia: Yeah.

Simone: And then it turned into, well, why don't my brands I love, why don't they have any diverse talent?

Simone: And then I guess what happened with when I did the shoot with Birdsnest and I did some shoots for some other big brands, it was an incredible opportunity and it was also, I'm not a photographer, for starters, so these big brands, they have contracts with agencies. Like, I just can't go in and do their advertising campaign for them.

Simone: And what really clicked for me was there's two things. The content could be brand agnostic, so that's where the stock library came about. I kind of thought, "Okay, instead of pitching me do a campaign for a brand," I'm like, "I can just create the content and any brand can use it."

Simone: And the flip side, which, you know, is as a social enterprise, back to you, Katie, back to my Josh, there's people out there that have dreams just like their peers to be influencers, to create content, to do creative writing, to work, to walk runways. Where are their pathways and opportunities to employment in the creative industries?

Simone: So, I could spend three days talking to you about the messages and inboxes I get from parents of little kids, to people themselves, to adults whose have parents as carers, coming to me that their kids love the camera. They have like a vibe, you know? They really wanna work and have opportunities to do this kind of work.

Simone: And so it kind of turned into this social enterprise model of we do the work, we create the impact on a commercial lens forward-facing, but behind the scenes we're giving people pathways and opportunities within this industry to develop skills for employment and we pay people for everything we do.

Laetitia: I love it. As I've said, I've always been a huge fan of what you are doing.

Laetitia: And when we met, it was way before I was on my journey with Understanding Zoe. It was when I was running my other business and consultancy. So I just love what you stand up for. And, you know, it's so important to go one step further in, you know, in making the invisible visible, which is a big,

Simone: Yeah.

Laetitia: research that we've done, and we called it Making the Invisible Visible, and we used data to, you know, kind of make the invisible visible. I find, like, you use picture,

Simone: Yes.

Laetitia: and human to make the invisible visible. And so there is, like, this beautiful mission that you have, and actually a huge part of Disinfluencer is invisible disability and chronic illness as well.

Simone: Yeah.

Laetitia: Which is where so many neurodivergent folks sit, and they constantly talk, they get told, sorry, "You don't look disabled. You don't look Autistic. You don't look." You know, it's like they do not look sick because maybe you're catching them on a good day, you know, and it's chronic illness.

Laetitia: Mm-hmm. And this is just something that annoys me so much. But I'm going to go to the question. So what do you want the parents of those kiddos or those adults who are, you know, identifying in those invisible disability space to know, about when, through representation, we can help visibility to happen?

Simone: Yeah, I think it's really important. The invisible disability is always a challenge. I get casting directors calling me all the time, and they'll say to me, "I want someone with a hearing aid," or, "I want someone with a prosthetic." They wanna visually see it, and I guess it comes back to that, like you said, the data.

Simone: Like, I think it's 96, 92% of disabilities are invisible.

Laetitia: 96,

Simone: yeah.

Laetitia: 96, yeah.

Simone: Yeah. Yeah. So, and that's why when I put, when I did the Josh's billboard, I stated, you know, what kidney disease, Autistic. I think Dylan Alcott does this exceptionally well with his podcast, Listenable. He will say the person, the guest on his show, and he'll say their disease.

Simone: I deliberately don't do my images and stock around wheelchairs or prosthetics or whatever. We are very people-centric. Because what I'm trying to do is, and I feel like it's working, is people with disabilities are people just like everybody else. So when you book a campaign or you're looking for a shoot in our stock library, we have tiles of all of our artists, like, this is Katie, this is Sam, this is Josh.

Simone: Like, all of our people have their names in, next to the photo so you know that they're people. And I feel for me, to answer your question, I've gone about it the wrong way, but when we work with people. So when I work, we did a shoot in Newcastle with a brand, and we had the team on site with us for the shoot.

Simone: Now, when the team come, they've never usually, like, been with a whole bunch of people with a disability, and that's where the impact happens because they see these people with their peers. When you get a whole bunch of people with disabilities together that don't have to explain themselves or justify themselves or tell their horror story or their life story, they're just kind of on the job doing their thing, like, that magic happens.

Simone: But for the client, they can see the impact of, okay, like, okay, you know, I thought I was getting some kind of cool marketing shots for the brand, but I can see these people and I can see them for who they are and get to know them. And that's a really micro level, but that has that kind of impact of, you know, I know that person would've went away and she's told everyone she knows about her experience with us on set.

Simone: And that is where we make the change because it's not until you kind of have a connection in real life with someone. And I guess that's another problem as well, that the kind of segregation of people with disabilities or the stigma with, you know, if you're neurodivergent or whatever.

Simone: But it's like when you just hang out with these people and you just get to know them, they're just people like everyone else. I'm like, okay, they might just eat a meat pie every night. Like, who cares? You know? Like. And that's kind of what I'm trying to do with my work, is I'm trying to do it, live it, and share that experience with people so then they can carry on my work and my impact through those conversations, because it is really hard to

Simone: Like, you look at my Josh, and he just looks like a teenage kid, but take his shirt off, he's got two tubes in his chest, he's got scar tissue all down one side of his body that can't no longer be accessed, including his arm. He's got a hockey stick scar from his transplant. And yeah, he is also, you know, intellectually disabled and Autistic.

Simone: He goes to a support school. Like, he needs care, so. But to look at him, you would never know that. And you could. Josh is non-verbal, but he will talk to you, but he. I often say to people, he'll say, "Yeah, yeah, okay, whatever." And I know that he's just saying that to say that. But I'm like, if you asked him to ask you what he said, he wouldn't respond to you.

Simone: So it's like, you know. And once people know that and get past that, I feel like that's where the impact is. And yeah, that's why we need to have more representation and more of those experiences because I feel like once people kinda hang out with a bunch of neurodivergent or chronically ill or disabled people.

Simone: They're just like everyone else. Like Josh, I say all that about Josh, I don't mean to be disrespectful to him, but I also know he is particular with his food. He likes certain brands of clothes, like his peers, like he's influenced by pop culture. He likes certain music. Like, he is doing all the other, like most of the things that other teenage kids are doing, you know?

Simone: But no one is marketing to him, and I feel like, back to the big brands, I feel they have that power of influence through pop culture. You've seen it a bit, like we've seen some actors in Bridgerton,

Laetitia: Yeah.

Simone: limb difference. Like we've seen a little bit, a sliver, but we need it to be like one in five of that, not like a sliver once or twice a year.

Simone: We need that in everything. We need it, and not on the periphery, like we need it more integrated front and centre.

Laetitia: Yeah. I agree with you. It's true that we start seeing a sprinkle, but what's interesting is then how much is told about that sprinkle, you know? Whether it's Bridgerton, whether it's, oh, I forgot now.

Laetitia: Oh my gosh. I forgot the name of the movie. With the green witch.

Simone: Ah, it's Wicked.

Laetitia: Wicked, thank you. Yeah. Oh my God, I forgot the name of this movie that the girls absolutely love. But yeah, it's really kind of, we are on the precipice, I guess, of,

Simone: A transformation, or this is my hope, you know, a revolution,

Laetitia: Yeah.

Simone: or something really shifting so that the representation is really matching the reality,

Laetitia: Yes.

Simone: rather than, you know, just being there for feel good or do good. It's like let's do it.

Laetitia: And I love what you said about when we gather in community and with other people, there is this sense of safety,

Simone: Yeah.

Laetitia: that, you know?

Laetitia: I know, like, I love to go to the Yellow Ladybugs Conference in Melbourne, which I'm going to very soon, which is a not-for-profit that we sponsor, which is for girls and women and non-binary who are Autistic. And such a beautiful event to be part of a community where we are all together, and there is, like, stemming in the room, and people allows themself to look after themselves and do what they need.

Laetitia: Mm-hmm. And I wish it was more mainstream. When I go to other conferences, I'm just like, "Where are my people?" And then I have to,

Simone: Yeah.

Laetitia: hide, and I have to find a sensory room where very little of those conference are actually having this, you know?

Simone: Mm-hmm.

Laetitia: I talked about South by Southwest, which didn't have any space for us.

Laetitia: So it's just like thinking about how can we bring this mainstream rather than the other way around. Really important. I love what you said. So let me close that interview. If a parent is listening to this, or an adult is listening to this, and they're constantly advocating, fighting for their kiddos or for themself, where do you want them to start?

Laetitia: What is one things that they can do this week so that they can, you know, really feel like something is changing and, you know, how can they save their spoons, basically? What is your advice?

Simone: Yeah, I think just, you know, speak your truth. And I think for me, I'm still overwhelmed by all the people that come to me.

Simone: Like, I don't have a disability at all, but I feel like I can have a good voice for that. I feel like the advocacy matters, but you have more influence than I think a lot of people have more influence. And I feel like back to that commercial lens, like, you know, we need to start kind of rallying and telling our brands like, "We love you," like, "Market to us."

Simone: Like, "We are here." Like, "Don't ignore us." I feel like there's a bit of power in that. And, of course, like, they can just come to our website and follow us on socials and hang out with us, and that's cool too.

Laetitia: Yes. So for those of us who, those of them, sorry, because I actually know really well about you, but how can they join the movements?

Laetitia: Where can they connect with you? Can you share a bit about that? And this will be in the show notes as well for everyone to click through.

Simone: Yeah. So, on our website, disinfluence.co is the best place to start. If you go, you'll see our talent and our influencers, but down the bottom you'll see how you can join.

Simone: Anyone can join. I do not say no to anyone. I will warn you that there is a big gigantic form you have to fill out, and I know we all hate forms, but if you wanna be represented as an artist, I do really need to know your shoe size. It's a thing, it's an industry thing. The things you learn, the industry's a bit of a Wild West out there.

Simone: But yeah. And I guess the process for us is, like I said, we do the stock library, but what we do is we try and if we don't do your photos, at some point we hope to, you know, we will do your photos, we will pay you, you'll have a portfolio, and then we can represent you for, as talent to put you forward for TV commercials.

Simone: Something really important that I'm doing now that still isn't kind of cutting through, but I'm gonna say it out loud to make it happen, is, like I said, casting directors come to me and they're like, "Oh, we want someone in a wheelchair," or, "We want this." And what I'm doing is I'm seeing the briefs for the casting.

Simone: If someone in my talent roster fits the brief, as in age, sex, location, I'm putting my people forward, and I really love that, and people appreciate that. So I'm not just here to cast you in the disability role, I want my people to be cast like their peers in the main character roles. So that's kind of back to my mission of what I'm trying to do.

Simone: And yeah, I think, you know, you don't need any experience or anything. If you have a dream, if you love being in front of the camera, like, you know, Disinfluence is definitely a pathway for you to explore that for yourself and your family or your kids, to, you know, get some work and work in the industry.

Laetitia: I love it.

Laetitia: I love it. Thank you so much, Simone, for joining the podcast today, for being such a supporter of our mission with Understanding Zoe, and for everything you do with Disinfluencer. I'm very grateful for you.

Simone: Thank you, Laetitia. Thank you so much.

Laetitia: Welcome to another Pulse from Zoe. Hey, Zoe. We are talking about getting together with other Autistic children or adult.

Laetitia: How does it feel for you to surround yourself with neurokin?

Zoe: It feels nice because they feel a little like me. They're misunderstood by many people.

Laetitia: Hmm. And what do you love the most in those moments with them?

Zoe: Well, we share basically the same feelings sometimes, and we feel like we understand each other.

Laetitia: Hmm. Thank you, Zoe, for this Pulse.

Zoe: Thank you.

Laetitia: That's a wrap for Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it. You can learn more about our platform at understandingzoe.com. Thanks for listening.