Simone Eyles On The Ability Of Media Representation To Bring Beauty And Light To Hidden Disabilities

Simone is the inspiring Founder of Disinfluencer, a ground-breaking initiative dedicated to fostering inclusion for people living with disabilities, neurodiversity, and chronic illness, in the media and entertainment industry.

Her personal journey as a mother, caring for her son who underwent a kidney transplant after being diagnosed with a rare disease, fuels her unwavering commitment to seeing a world where 1 in 5 individuals with disabilities are represented and empowered.

Through her social enterprise, she hopes to offer meaningful employment opportunities and increase the representation of people with disabilities in mainstream media.

Through Disinfluencer, Simone will reshape the media landscape to reflect the true diversity of the human experience.

Simone discusses why Australia is failing its diverse communities by not investing in or practicing representation, and how businesses can be more inclusive of people with disabilities at home, in the workplace or online.

Highlights from the interview (listen to the podcast for full details)

[Indio Myles] - To start off, could you share a bit about your background and what led to your work in diversity, inclusion, and social impact?

[Simone Eyles] - My background is in the marketing industry, and I have a degree in graphic design. I specialised and completed my Honours in photography.

When my son was born with a kidney disease, he was very sick and needed a lot of treatment in hospital. I obviously couldn't go to work during this time, and this was about 10 years ago.

I then accidentally started a start-up, which was incredible and awesome. However, it was just a means to an end; it gave me a bit of purpose, so I wasn't just the mum of the sick kid. With where I am today, it's weird because I ignored the whisper in my heart for so long to do something in this space.

I’ve always wanted to do something creative, commercial and empowering, because as the mum of a child with a disability, I have a massive network. I love digital communications, and I didn't know what this impactful work would look like, but then I found social entrepreneurship, and I haven't looked back.

As a mum of a child with disabilities, I don't see people with disabilities represented in the media. If you do, it's usually through the lens of advocacy or neglect. While this is important, where is the beauty and light to that shade? That's why I developed Disinfluencer into what it is today, so we can have people with disabilities represented in the media in an empowering way.

As the founder of Disinfluencer, can you share more about this social enterprise and what solutions you are developing?

At Disinfluencer, our social purpose is to help people with disabilities gain meaningful employment. There are people with disabilities who dream of walking runways, being content creators, journalists, or stars in TV shows. My inbox is full of comments from other parents saying all of this, but where do people with disabilities go to do that?

I think of my son Josh, who is a bit of a TikTok creator. He's great at animating and creating content (not that he wants to do this as a job), but where can he go with that?

He's autistic and intellectually disabled, he's likely not going to go to university, so where is his pathway to explore his creativity? As a mum, I'm also happy he's on TikTok creating content, not just consuming it, and there are a few things there I’d like to explore.

Obviously, this all sounds warm and fuzzy, but it comes at a huge cost. The flip side is we engage with brands and businesses to help them create inclusive content. We help them with their diversity and inclusion measures in their workplaces so they can have more inclusive content and practices across their digital channels.

This funds our social impact, which is supporting people with disabilities to explore their creativity and become job ready. We manage a stock library, talent, and a few influencers; we’ve created this mini circular economy that has a social impact but also helps fuel our mission of taking disability mainstream.

What communities have you identified in Australia that are underrepresented in the media, and what impact does this lack of inclusion have?

One major underrepresented community is people with invisible disabilities. I think again of my son Josh, he's had a kidney transplant, he's autistic, and he's intellectually disabled.

If you look at him, he looks like any other teenager, but he has scars all over his body from years of treatment, and obviously he had his kidney transplant when he was only four years old. He has a massive hockey stick shaped scar across his torso from this transplant.

I’m talking about his kidney transplant because a transplant isn't a cure, and every day he's taking medication, immunosuppressants. We are constantly suppressing his immune system, so his body doesn't reject that organ, and that has its challenges that impacts our life.

Every day, without fail, he needs this medicine. One of the medicines is refrigerated, which that impacts our ability to travel. People don’t know and they don't see that.

If you think back to COVID, everybody could see the impact of the virus, but Josh getting sick is even more impactful because he is immunosuppressed. He gets everything and he takes twice as long to recover. I'm trying to educate people about chronic illnesses, and even after COVID, everyone has forgotten how for example going to work sick can impact others.

If we look at the data, one in five people have a disability. The biggest disabilities in Australia are invisible, and when I say that you probably just think of mental illnesses. I’m using the word disability quite generally here, I'm talking about physical, mental, emotional, and then medical disabilities

It's not that everyone needs to go out and tell people about all of their problems, but because these conditions are invisible, I don't think people can have empathy. If they were to see or know about these invisible disabilities, we'd have more empathy in our society and the world would be a better place.

That's something I've struggled with, because how do you show something invisible through an image, which is what we do? I'm always talking about trying to educate people, and that's why my e-learning materials are important as well.

There's not much data about this, but if you think about the workplace, there are people who aren't disclosing whether they have a disability. We are seeing a lot of media coverage about career-oriented women in executive positions who are coming out with an ADHD diagnosis.

It's empowering that they have that opportunity, because it makes sense to how their brain works.

If workplaces become inclusive, staff would stop masking or not disclosing their disability. They would even become more open about if they're caring for a sick child or an elderly parent, and I think that would generate social capital. People could have a bigger impact in their workplaces and careers, because people don't understand disability.

On the flip side, you don't know what you don't know either, so it's about filling that gap. I feel like disability is the final frontier. It's not that it's taboo, but no one talks about it because people are awkward and don’t want to say the wrong thing.

They don't want to upset anyone, and while I don't have a disability, I'm over here representing my community, the people who I have known and loved for over 17 years. We’re desperate to be included and for you to ask how you can support us.

Why is representation an important step in creating a more equitable society, and how can people more meaningfully create inclusive spaces for diverse people?

This is a great question, and it’s something I’m passionate about because you can't be what you can't see. In my space, I'm working with businesses and brands who want representation.

They want it so much, but where do they go to get it? Representation will help us reduce stigma, stereotypes, and barriers. Unless you know or love someone with a disability, you don’t realise that people with disabilities are isolated.

My son Josh, he goes to a special needs school. He's in his own little cohort and classroom, but he does mix a little bit with mainstream schooling. People and especially mothers see other people in the media and advertising.

I'm a mum, I'm spending money and buying products, but I don't see my son, or our family represented in any of the brands I'm spending money on. That's a lost opportunity, because one in five people have a disability. That's a $13 trillion global market, 4.4 million Australians. Can you imagine the impact it would have if a brand you know and love started using someone with a disability, someone who is exactly like someone else you know and love?

It's about being seen, that's all people want. They want to be seen, heard, and included. They don't want special treatment, and through my work I've been surprised because I had this assumption no one wanted to see this, but trust me, the brands are desperate for this.

As an AMP Foundation Tomorrow Maker, you’re currently getting support to develop and grow Disinfluencer. What have been your reflections and learnings from the support to date?

The AMP Foundation is part of Disinfluencer’s DNA. Without the AMP Foundation, I would not be talking to you today, and I say that because I didn't know what a social enterprise even was before this program.

There were so many things I didn't know about, and through the AMP Foundation and working with Impact Boom, I became so hungry to learn about social entrepreneurship. I was desperate to do something. I wanted to create a business, but I knew how hard it is to create a business.

I'm a busy mum, I have little time and resources, so having that support was crucial. I'm not doing this for money, I'm doing this for impact. With the help of the AMP Foundation and Impact Boom, I can develop a framework to measure my impact so I can be held accountable for my impact.

What I mean by that is if we talk about social entrepreneurship, I have clients, a brand and the business, but I also have my beneficiaries, the people with disabilities who I help. I am now able to clearly articulate that, and I know that a social enterprise must be profitable.

I need that money to help my people with disabilities become job ready, it’s this missing link I've been looking for. Without the AMP Foundation and Impact Boom, I honestly don't think I would have started or lasted in this sector. I've done a lot of work with their help; I've now got my Social Traders certification. I didn't even know what it was, and now it brings me more opportunities.

I can have conversations and clearly articulate what my impact is, and who my beneficiaries and clients are. I need to be sustainable to measure and achieve my impact, and all the people who support me like the AMP Foundation and Impact Boom can see that I'm here saying we want representation.

We want people with disabilities in employment, and I can clearly state things like this month we're helping seven people appear in TV commercials. That's paid employment for people with disabilities, and we're doing our job.

What advice would you give to an entrepreneur or advocate who wants to help others through starting a social enterprise?

I would say there are so many great people doing good things. I would recommend starting by checking out The Business for Good Network and Impact Boom. Even just listen to this podcast, I've learned so much from this podcast. There are so many organisations in Australia who can explain to you what social entrepreneurship is. It’s exciting times for social entrepreneurship in Australia.

A lot of people hear about this movement and use it as a throw away statement. People say they are working in business for good and impact, but unless you are measuring and delivering that, there's a difference between telling a warm and fuzzy story and having data, numbers and figures.

Explore all the organisations you can find in this space, there is heaps of free information out there. Start your journey, decide on the business model you’ll use to make money and how you'll pay for and create impact. Don't make it too complicated, just start doing your thing and exploring certifications.

I only got my certification a month or two ago, it took me a while to define my business model to then be able to clearly apply for my Social Traders certification. There are heaps of information available, so explore and start developing your idea.

Have a crack, if you're here to do good work and make an impact, you'll soon find the right people and network who will cheer you on and support you with whatever help you might need.

What inspiring projects or initiatives have you come across creating a positive change?

I'm going to shout out Grow the Future here in Bega. They grow food and help disengaged youth through employment. They started in a paddock and now they have more than one farm, and they also have a little market. I think it's great, because being out in the sunshine and nature (especially for disengaged youth) is amazing.

They can take a seat and watch their produce grow and be sold which is cool. The founders are the nicest guys you'll ever meet, and everyone in social entrepreneurship is super nice. I want to mention Grow the Future because they’re working locally here in Bega. I live in Bega, and they’re working hard on circularity and developing the circular economy.

There are lots of exciting things happening here, people are starting to think about the environment and becoming reconnected. It’s cool to have that work literally in my backyard, from big global brands to teeny tiny social enterprises like mine and Grow the Future.

To finish off, what books or resources would you recommend to our audience?

This is an oldie, but I've got to give it a shout out. I'm going to say The Alchemist. I love this book, and I think it's a book you read and something out of it every time you read it. I’m mentioning it now because I used it in my pitch for the AMP Foundation showcase. I used the famous quote about how once you decide, the universe conspires to make it happen.

Once I made the decision to go all in with Disinfluencer, the universe literally conspired to help me. I found the AMP Foundation, Impact Boom, and now I'm part of the Business For Good Network. I've received my Social Traders certification, but 18 months ago I didn't even know about any of these opportunities.

I sat on this idea for a long time, I wasn’t sure whether to do it. Once I said that I was going to do this, everything happened. It’s one of my favourite quotes and it’s just a great book about how along your journey the universe will help you.

I know that's a bit woo, but once you decide to do something, the universe will conspire to help you. Even if you fail, you don’t; you always win because you learn.