Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering our questions about what life is like when
you have a disability. My name is Peter, I have
cerebral palsy, and I'm your host this week, I have
Simone Isles. Simone is the founder of an organization called Disinfluencer.
(00:30):
Her goal her mission is to improve representation for people
with disabilities in all forms of media and also give
disabled people the opportunity to be employed in the space
meanfully and equally. I loved this conversation with Simone and
(00:51):
I hope you do too. So without any further ado,
let's get into it.
Speaker 2 (01:03):
Hi everyone, I'm Simone Isles and I'm the founder of Disinfluencer.
Speaker 1 (01:09):
Thank you so much for being here. Simone. I'm so
excited to talk to you today. So let's start with
the obvious question first, what is Disinfluencer.
Speaker 2 (01:19):
Disinfluencer is a website a platform that helps businesses and
brands be accessible and inclusive. So think talent, stock photos
and d INNI training.
Speaker 1 (01:32):
When you say stock photos, what are they.
Speaker 2 (01:36):
Photos of people with disabilities doing their thing, enjoying their life,
at work, at play with their friends. We have very
little representation in the media. There was just a huge gap,
and I thought, well, I started creating content for brands
and I was making them and I'm air quoting stock
photos or content library content that are brand agnostic. So
(01:59):
any business brand can have access to these beautiful, professional
curated photos to have people with disabilities represented across their
businesses and brands. And on the flip side of that,
as a social enterprise, I also help people with disabilities
who have a desire a dream like there peers to
(02:19):
be content creators or catwalk models or talent in TV commercials,
to get upskilled and have those opportunities and be paid.
Speaker 1 (02:31):
Yes, that old chestnut getting paid is so difficult. We'll
touch on that later on in the episode, but I
know many people will really relate to that of how
difficult it is to get paid when you're a disabled person.
But first and foremost representation, I'm sure we both agree
it is so important, And that's why what you do
(02:52):
a disinfluencer is so important. Because when I think of
stock photos, particularly when I first started out of university
and I was doing some marketing for a disability organization,
all the stock photos were just frankly ridiculous. They were
either in a medical environment that you know, didn't relate
(03:13):
to what the organization that I was a part of,
or there was a person in a manual wheelchair on
the sand in the beach, and for any of us
who use a mobility aid, we know how ridiculous that
photo is, and it just you know, for me, it
would just illustrate the organization was trying to represent disabled people,
(03:36):
but it also just highlighted how much they did not understand.
Speaker 2 (03:42):
Yeah, that's that's so what you said. There is everything
I do. So the first thing was is why do
people with disabilities? Why do they have to be represented
in a state of being cared for or being supported
(04:02):
that is one aspect of their life, even if it
is something that they need a lot of. The kind
of tokenistic person in a wheelchair is not representation. And
I guess what I was saying before. What I've come
to learn is sadly that's all there is, because that's
(04:23):
all there is, yet there's a yearning for more. So
that's what Disinfluencer is doing and obviously work with you know,
I work in the marketing and advertising space, but we're
working with government organizations we're working with advertising agencies, we're
working with designers. People want to do stuff, but they
(04:44):
don't know what to do, so they're doing nothing. So
I hope I can empower them by removing that barrier
of giving you access to these beautiful photos and giving
you some education to empower you to market your inclusion
and accessibility in a positive way. People with disabilities are consumers.
They want to be marketed to. Like, that's kind of
where I started with all this with my sons. So
(05:07):
I don't know why it's like why it's a big deal.
My Josh was actually born with a rare kidney disease
and he's had a kidney transplant, So he was a
very sick baby, like in hospital for years kind of sick.
He had nine months of hemodialysis when he was four
years old before his transplant, which was a live donor
(05:29):
from my husband his dad. When he was about six
years old, he was diagnosed with his intellectual disability and autism.
I'm a graphic designer by trade, and I was working
in marketing, so I've always been a creative and loved marketing,
and so when Josh was diagnosed, like, I didn't work
(05:51):
for years, I've always had this yearning to have you know,
it's always really frustrated me how disability has been portrayed.
The breaking point was I had this inkling and I
tried a few things for so long to do something,
and I didn't know what to do. I had this
whisper in my soul, I guess, and I ignored it
(06:13):
for a very long time. And then it was in
twenty two, twenty twenty two, Hannah Deviny, I'm sure you
can remember, called out Lizo and Beyonce for lyrics in
one of their songs, and I kind of just had
a moment where I got my phone out and I
recorded a voice note which turned into a podcast, and
(06:37):
then from that I just went on this journey of
you know, That's how disinfluencer started. And I inspired also
by Josh who is a TikTok creator and he does
all this really cool stuff on TikTok, Like he'll do
duets and he'll do animations, but he'll draw them in
his book and then he'll film with his camera like
(06:59):
to move to make the animation, and then he'll make it.
And I was just thinking, like he's quite tech savvy,
and it just kind of dawned on me, like when
I was his age, like what I was doing and
working and what he is doing probably that him coming
to that age of getting a part time job, like
what could he do? And I just thought, you know,
(07:22):
back to this whisper, I thought I could create something
as a creative for creatives to express themselves.
Speaker 1 (07:30):
Well, that's an amazing story. And clearly you're such an
ally for the disability community, for Josh in particular, because
getting employed is super duper difficult, even after having degrees
and all these things. Disability really does impact employment. It's
(07:51):
just a known fact. If someone's sitting here as a
creative person listening to this podcast and thinking, you know what,
I've always wanted to be an influencer. I've always wanted
to do something creative online, but you know, I don't
feel like anybody would relate to my experience or I
(08:11):
don't even know where to start. So how does your
organization help people like that?
Speaker 2 (08:18):
So we have an academy. It will launch officially in December,
which isn't that far away, where people with disabilities can
come and they can learn online. We'll have some online
courses and then we'll have some supported kind of master
classes and we'll do heaps of really cool stuff in
the creative space. You can create your own empire. You
(08:41):
can have an Instagram account and you can start creating
content and build up your profile and become an influencer.
So there's more opportunities. Now. I know that sounds really easy,
but within this influencer in our academy, we can support
you with that and help you with training and oppose
skilling and give you opportunities to learn and meet people
(09:03):
and develop your skills. I think there's a really big
opportunity with self employment for people with disabilities. Now I
don't say that lightly because I, as a mum, have
always struggled with the isolation and loneliness. Even as I
work now like I'm sitting, I'll call it my ice box.
It can be quite lonely. And that's why the online
(09:23):
portal is really important because I want to have like
a like a business. It will be a business group
where we will have networking opportunities and opportunities to connect
and have conversations and virtual networking and kind of connect
with other people and learn things. So I think that's
a really untapped opportunity for people with disabilities, and I
(09:45):
guess my mission is to take disability mainstream. And even
though I'm kind of I have a very strategic, top
down approach, as in I'm working and talking to the
big brands. I feel like when we see disability, rap
is it in the media, and we can remove a
bit of that stigma and we can say it's okay
if you don't know, like ask people, you know, if
(10:07):
you're doing a marketing campaign, talk to people with disabilities,
Like if those people had consulted like that what you said,
that kind of photo of someone on a beach in
a wheelchair, if they had consulted with someone, they wouldn't
have created that photo. But they're not consulting with anyone
because they're too scared and they're doing something thinking they're
(10:28):
doing something good and that they probably honestly felt it
was awesome, but it's obviously, like you said, to the
disability community, it's like, well, no one's ever going to
do that, like it's not authentic, and that's the problem.
Speaker 1 (10:42):
I totally agree with you. I think humanizing disability and
making people say that disabled people are human and people,
and yes, our disability is a big part of our lives,
but we're also multifaceted, and we're also all of us
are very different, so you know, we have different interests.
Some of us are really nice, some of us aren't
(11:05):
that nice. You know, we're just like any other human.
I think there's an infantalization that really needs to be
worked out as well, and they think for me, I
often get whiplash when I speak to brands or organizations
that have had no influence by a disabled person before,
because disabled people and the disabled community and their allies
(11:28):
are way over here in the future, you know, not
only if we accepted it. We don't see it as
a negative. We see it as a positive. And yet
when we're trying to work with organizations, they're way back
in the dark ages, so it can be really difficult
to advocate. It feels like you're like I'm hitting my
(11:48):
head against a brick wall sometimes to be like, really,
we're still at this level. There's so much education that
needs to be done, as you say, but I also
I think there's a balance between having that really authentic
reflection as we all want, but organizations are so worried
(12:09):
that they're going to be token stick or they're not
going to do it right, or they're going to get
called out for something on social media. I would love to.
Speaker 2 (12:18):
Hear you repeated one. That's and I guess how I
approach that is. You know, I obviously don't have a disability.
And I say to people that and this isn't my quote,
it's Kelly's Like inclusion is like cheese. You can never
have too much, but some is always better than them.
(12:39):
And I kind of say that to people to break that,
break the ice. Yeah, there's so much stuff you can do.
This like it never ends, but it's a it's a journey,
it's not a destination. And by doing something is better
than nothing. And by doing something and being having that
co creation and that lived experience input at an early stage,
(13:05):
I'm surprised by the appetite to learn. That's why I
created my E learning modules. So we had a casting
agent that wanted to do a TVC of someone on
a treadmill with a prosthetic and I had to say
to them, no, Like a prosthetic leg is a two
hundred thousand dollars leg. People with a prosthetic leg don't
(13:30):
get up and run on a treadmill. As a visual
like that might look cool. But it's like you said,
the people I know with prosthetics aren't running on treadmills.
They're doing yoga or swimming, and I'm like, that's actually
quite dangerous if they were to fall and hurt themselves
or hurt their prosthetic. It's not like they can just
go to the shop and buy another one. And when
I had this conversation with them, they're actually mortified and
(13:52):
they apologized because they didn't think that that was a thing.
And that's okay. That's okay because you wouldn't know that
until someone points those things out to you. You know,
there's other organizations like Shift twenty doing amazing work, and
Henry from Inclusively Made. They've got the production crew that
have some understanding of working with disability. Like it's not
(14:15):
just like token stick. And you might think it's cool
that you're getting, you know, someone with a prosthetic or
someone in a wheelchair in your ad, but I'm like,
the real power is this person actually has this dream,
they've had an experience, and they've been paid and they've
gone to work, and I'm like that's something so many
people take for granted, you know, And that's the power
(14:38):
not the end result, and they're actually shocked. And they're
the conversations I keep having every day to little organizations,
to government, to big brands, and I won't stop having
that conversation. And I feel like one in five people
have a disability. It's a massive market. No one's marketing
to the no one's representing them. So when we can
(14:59):
have representation, we can shift how we see people with disability,
and hopefully that will filter in more than just you know,
TV commercials.
Speaker 1 (15:09):
I feel like I'm preaching to the choir, which is
just so lovely because disability representation is so important. But
I'd love to hear your insights in and around where
you think the representation is needed most now. Of course,
you know, we liked disability representation to be in every
(15:30):
form of media and advertising because I guess what, we're
one in five and you know, we touch everything. We're
part of the community and that should be reflected. But
are there particular gaps that you're really motivated to try
and fix.
Speaker 2 (15:47):
Yeah, there's a few. So obviously there's a lot of
invisible disabilities. You know, if you're to look at my Josh,
he looks like any other teenager. But there's a lot
of complex care that goes on with his trains plant,
So we have the invisible aspect. And then I guess
people with disabilities don't sit in silos. They belong to families,
(16:09):
community groups, sporting groups, even their support groups and networks,
their NDIS providers, they're allied health supporters, their healthcare professionals.
So having, you know, sticking one person in a TV
that has a disability isn't clear representation. Not that it's
token is stick, but it's like there's it's deeper than that.
(16:34):
And I guess finally, the biggest thing I'm working on
is having disability as the hero of the creative And
what I mean by that is my say, my Josh,
for example, he eats meat pies every day. That's his
safe food, that's what he eats. He likes a certain brand.
(16:55):
We will move heaven and earth to go by if
there's a special edition of this product. Now, meat pies
are traditionally, I guess, in media and marketing, seen as
the go to at the footy. My Josh doesn't go
to the footy, and I'm sure I've bought more meat
pies than ten million stadiums. It's a lot of meat
(17:16):
pies I buy. So why, you know, imagine the creative
And I'm not alone here, back to a lot of
kids that have save foods, having creative that speaks to
that person as the hero of the creative when that
day comes. My work here is done not when we
have someone in the mix, but having the creative purely
(17:37):
speaking of that person and their thing and then representing
you know, all the other mums and dads and family
and people out there that are also cooking some ridiculous
same safe feed for their kid every night of the week.
But that's how it is for us. And to have
that as the hero creative. I think the first brand
that does that, they will reap the rewards of that.
Speaker 1 (18:00):
I would be quite intimidated to try and create stock
photos that reflect the disabled life. I wouldn't even know
where to start because it's such a nuanced experience with
so many different elements. How did you go about starting
those stock photos? And how do you do you ever
reflect inaccessibility or maybe ableism.
Speaker 2 (18:22):
That's a really great question, and to be honest, I
have never thought about that. Because I photograph people, I'm
actually working with people that dream of doing this. Work.
So it's not like I'm conjuring up some false image.
I've got these people. I've got these parents in my
DMS that their kids love the camera and they love
(18:44):
to show off, and they've got a really fun personality.
So we work with them and we do their headshots
and build their portfolio and then we put out casting calls.
It's about giving out people with disabilities a paid work experience.
Do you hear makeup get catering, Like we have a
really cool fun day, you know. So it's about empowering them,
(19:06):
giving them an opportunity, giving them money, and the byproduct
of that is we also create these incredible photos that
go in our stock libraries.
Speaker 1 (19:16):
For me, there's always a really big contradiction with this work,
and it's so important, don't get me wrong, but I
often feel like marketing organizations can say, Okay, we need
to tick the multicultural box, we need to tick the
disability box. They put people in an at and think, right,
we've done our job good where you know, we can't
(19:39):
be called out for not being inclusive. And yet they
actually don't have anybody in those organizations that are working
for them, or if they are, they certainly aren't in
positions of power where they can be heard and their
opinions are put into business practices. I'd love to hear
your opinion on that. Sometimes it feels like a little
(20:01):
bit of a bad aid and it's not actually effective.
Speaker 2 (20:06):
Oh I agree. I agree one hundred percent. And that's
why I do the work I do because I think,
you know, unfortunately that's where we're at, but it's changing
and the appetite is there. I think organizations would be
surprised at how many people that do work work for
them that are parents or cares of someone with a disability,
(20:29):
as in their kids. So I think of my husband,
for example, No one his work knows what's going on
with Josh. Now imagine if they did. Imagine if he
felt comfortable to disclose that and there was initiatives where
he was confident that that was embedded in their company culture.
Imagine that. Hopefully they're like thinking about, well, you know,
(20:53):
how can we embed this in our hr How can
we have initiatives that support our staff. How do we
are ask our staff, you know, why aren't our staff
disclosing that their care is until there's some bad thing happening.
And I feel like that is happening now, And that's
that's kind of when I work with people and have
these conversations, I feel like I can leave quite confident
(21:15):
that Okay, my work's done and I'm leaving the building,
but the conversation is still happening because the appetite is
there on what what else can we do? You know?
And they're not scared of or we don't know what
to do, we'll do nothing. They're like, okay, well what
can we do? And they start exploring.
Speaker 1 (21:32):
That there are so much data around disability employment and
the fact that we're really loyal, hard working employees, And
you know, I'm really proud of particularly of how difficult
life can be when you have a disability and how
challenging it is. So many of us are so motivated
to be employed. And going back to what you just
(21:55):
said in and around your husband not feeling comfortable to
disclose about jobs disability, it's like, well, there would also
be people in his organization that have hidden disabilities or
not visible disabilities, and how awful that they can't be
truly themselves. And that's where I think marketing for businesses
(22:17):
to be truly inclusive and use an organization like this
influencer is so important because yes, they're talking to the
market and the consumer, the customer, but they're also talking
to their employees and in the end, is a culture
an environment so important for businesses. It just seems so
(22:38):
logical that they should take these steps to have more
inclusive marketing because it'll have a flow on effect for
the whole organization.
Speaker 2 (22:48):
Yeah, and that's really interesting because when you be when
we start talking about being inclusive, you know, and I
want to use the cliche of a ramp for example,
like it actually benefits everyone. It just doesn't benefit the
people with disabilities. It will benefit everyone in the organization.
And I believe when we can embrace the word disabled,
(23:11):
we can ask people what support they need. But I
feel like there's a lot of like, oh, they're disabled,
we don't know what to do. People with disabilities know
what support they need. They can adapt and overcome, they've
done so much mental gymnastics even before the questions. Ask like,
ask the person what support they need, and they will
be able to tell you and usually be able to,
(23:31):
you know, do some magic to get the support they need,
so you don't even have to worry about that. That's
how Unfortunately, people with disabilities live. And that's why I
think having these conversations is really important, because people like
are still at the start, they're still not sure, they're
scared to say the words, so they do nothing. Where
I'm like AB's saying, like, it's cool, let's have a conversation,
(23:54):
let's do it, and then we do and then we
do it and it's no big deal and people like, oh, well,
that wasn't as hard or as scared as what I thought,
and happy days.
Speaker 1 (24:06):
Thank you for listening to this week's episode. I hope
you enjoyed it, and thank you Simone for your time.
If you did enjoy this episode, could you please share
it with a friend or share it on social media.
It helps more people find the I Can't Stand Podcast.
Don't forget. You can always get in contact with me.
(24:29):
My handle on Instagram is at Peter Hook or you
can send me an email over on I Can't Stand
Podcast at gmail dot com. Thank you so much for listening,
and until next week, have a good one guys. Bye.
(24:49):
I would like to respectfully acknowledge they were wondery and
Bunner wrong people of the call and nation of which
I record the podcast. Today and I pay my respects
to both elders past and present, along with and especially
to those in the First Nations communities who are disabled
(25:12):
themselves