"But you don't look disabled..."

Transcript

Chantelle Ellem 00:00

Welcome to Season One of Feros Talks Unsaid, Untold. I am Chantelle Ellem, also known as Fat Mum Slim. In collaboration with aged care and disability service provider Feros Care.

We are here to tell the stories no one else tells, give space to the people who have not previously been heard. Sometimes it is uncomfortable and sometimes it is even controversial, but it is always passionate, interesting and ready to unravel a fresh conversation, shifting the way we see diversity and inclusion in Australia.

Invisible disability has been making headlines in 2023 and for good reason. At the Harry Styles concert at Melbourne’s marble stadium, heartbreak high star Chloe Hayden says she was denied access to the sensory room for not looking autistic enough. Australian comedian Em Rusciano who has ADHD and autism join the conversation, only to be accused of faking her diagnosis and leaping on the bandwagon for clout.

As M explained on Facebook, I shouldn’t have to explain myself. Yet this week I found myself having to endure people debating if I’m autistic enough, or even at all, how is that OK? And for those who live with invisible disability, it’s a familiar story. Maybe you’ve been told, oh, you don’t look disabled. Or maybe you’ve been challenged access to a service or a venue just like Chloe Hayden.

Despite an increasing awareness in society, among how various disabilities present and how they impact people, it’s still a lot easier for many to understand visible disabilities. So why is that? And what can we do to change it? Today we’re speaking to disability advocate Lisa Cox, who’s doing some amazing work around visible and invisible disabilities. Lisa Cox is an award winning corporate advertiser, author, TEDx speaker, and internationally acclaimed disability advocate. Hello, Lisa, welcome to the podcast.

Lisa Cox 02:12

Hello It’s great to be here.

Chantelle Ellem 02:14

So you’ve been on the Feros podcast before and told us a little bit about your story. For those that haven’t listened to the episode, can you tell us what happened to you at the age of 25?

Lisa Cox 02:23

Yes, I have been here before and I suppose what’s the thing that’s about my life have changed, but that particular thing has stayed exactly the same. So when I was 24, I was just standing around railway airport waiting to board plane and I don’t remember any what happened next because unbeknownst to me, I had the Strep-A virus raging around my body and it caused me to have a stroke. So they would let me on the plane, fortunately, and I collapsed at the airport, spent the next three weeks in a coma and two months on life support and every year in hospital after that, so the next year in hospital was all sorts of fun. I had my left leg amputated. All of my right toes and nine of my fingertips, had heart surgery twice and total hip replacement. So they’re all the physical amputations and disabilities and things that you can see I suppose, but there are lots of invisible disabilities and scars on my brain and I’ve got a permanent brain injury now and things that you can’t say as well.

Chantelle Ellem 03:37

I’m so sorry that you went through that must have been quite an ordeal.

Lisa Cox 03:42

Sorry your listeners called same but I’m in a wheelchair full time. I have a prosthetic leg and all the old things you can see in my missing thing tips except for one. I’ve still got my left thumb and there are scars everywhere on underneath clothing and those things as well.

Chantelle Ellem 04:04

So your life completely changed after that day.

Lisa Cox 04:07

Completely. So I’m over 25% blind as well and can no longer drive which made a huge impact on things like my independence so I’m pretty stubborn. So I was like a lot of people who– I don’t want to speak at home but you acquire a disability on it. I’d gone into a car and disabilities. I’m fiercely independent, I can do anything but then had to swallow my pride pretty quickly and realize that I can’t do anything so I had to learn to feed myself, trust myself, couldn’t do anything but lie flat and blink and had to be spoon fed and people who’ve had a child I know what it’s like to raise a toddler. That’s what I was like for the few months, first several months of rehabilitation.

So now I’m completely independent, self-care and everything. I’m all good.

Chantelle Ellem 05:11

Yes, you come along.

Lisa Cox 05:12

For several months, it was Yes 24/7 care being rolled at night and I suppose the thing that was, are very different life now.

Chantelle Ellem 05:25

Yes, you’ve come a long way. So following that stroke and life changing experience, you acquired some visible disabilities, which we’ve talked about, but more importantly, or importantly, some invisible disabilities. Can you speak to those challenges that aren’t immediately obvious to people?

Lisa Cox 05:41

Yes, sure. I don’t always speak about these and that’s for no real reason other than often there’s not a lot of time to go into them all and there’s lots of them and it’s really nice for people who see me for the first time they’re like, oh, you’re in a wheelchair, that’s it. S that’s– Well, my voice has been affected and my eyesight that’s as old people really know about and it’s the invisible disabilities impact my life so much more than the physical stuff.

It’s not my wheelchair that stops me going around the world or going to the gym even. It’s all of the invisible disabilities. So apart from having an acquired brain injury, I suffer greatly from fatigue, anxiety, I have a slight so what is so all sorts of problems with my sleep. That’s been happening for years. My sleep, my own speech, obviously and it’s better or worse, sorry, I joke that sometimes, in the afternoons, depending on what time of the day you catch me, I still haven’t compared to a bottle of wine. Depending on if you catch me on a good day or no and I have something called secondary ADHD.

So a lot of my symptoms, they mimic ADHD symptoms, more than they do necessarily brain injury symptoms. So people who’ve got ADHD might recognize a lot of symptoms or be able to relate to a lot, a lot of– Would be able to relate a lot to each other, I suppose. My proprioception is absolutely cactus and that’s for anyone who doesn’t know, knowing where your arms and legs are in space.

So when I go to the gym for example, my exercise physiologist, my trainer, sort of has to say no, this is real leg is this where your arm is and I have to visually look at my arms and my legs to know where they are because that part of my brain has been damaged. So I have no idea when they are but because my vision isn’t great, that’s a bit of a challenge too.

As I mentioned them over 25% blinds, my memory and my concentration aren’t great either but like all– I won’t say like all disabilities again, I’m not that speaking to everyone. This is just my my story. It has its good days and bad days. So I’ll wake up some mornings, and I’m firing 110% but other days it’s just no hurt. So it’s just–

Chantelle Ellem 08:33

More challenging.

Lisa Cox 08:33

Yes, it’s more challenging. So I’ve learned my triggers. I do know what’s– What will encourage a great day and what will not encourage them and that’s a good day.

Chantelle Ellem 08:45

Yes. So how do those invisible challenges that we’ve just talked about make day to day life more difficult? And are they more difficult than your visible challenges?

Lisa Cox 08:55

They are so much more challenging. For me personally they’re so much more challenging. As I mentioned before, it’s not my wheelchair and my prosthetic leg that stops me going to the gym, the shops, seeing friends and family and traveling the world and working. It’s my invisible disabilities that have stopped me from doing certain things.

Yes, it is normal wheelchair that’s for me getting a flight of stairs and it does stop me doing certain physical things but it is often my cognitive challenges and my neurodiversity and those sorts of things. My epilepsy even, I didn’t mention that before which have stopped me from doing a lot more than I thought I would want to do sometimes. I still have the mindsets of somebody who is not me in the body of someone who is me. So I have to rein myself in this home talks and go, no, you have a brain injury can’t do that, stop and my aspirin is to remind me sometimes, don’t say no to that.

Chantelle Ellem 10:15

Yes, you want to do the same things as pre-stroke, Lisa, just to do.

Lisa Cox 10:18

Yes. Not exactly.

Chantelle Ellem 10:20

Do you think we’re progressed as a society in recognizing neurodiversity, and other invisible disabilities? Or do you still think we’ve got a lot of work to do?

Lisa Cox 10:29

I think we are slowly. I think we are started, I think the conversation has shifted a lot. When I think about generations past the comment, the conversation has shifted around things like mental health, generations decades older than me, that certainly weren’t a conversations around depression, anxiety and things like that but it’s wonderful to say I mean, are you OK days and those sorts of things, and people being a lot more open talking about the sorts of things that never would have happened in, perhaps my parents’ generation knows those sorts of generations but when it comes to say, neurodiversity, and those sorts of things, I think we’ve got a long, long way to go and a lot more conversations to be had, because it’s far more new ones, I sways, and there’s a lot more understanding what needs to be happening in those spaces but there are some wonderful advocates out there having those conversations about those sorts of things.

Chantelle Ellem 11:38

Yes, I think we have come a long way and even it depends on who you’re talking to. I have a neurodivergent daughter and in some school settings, if I’m talking to one person, they really get it and so empathetic and advocating for as much as I am but then one incident like last year, she was getting bullied, and I had to go to the police about to talk about it and his leaving words for us were, you need to go and get some help for a diagnosis and it just was like crashing, because I was like, you don’t think we are. Like we’ve we spent thousands every month trying to help her and it just was his lack of understanding. I just wanted to pull him aside and say, let me explain it to you but it’s exhausting but yes, in those instances, we’ve got so far to come.

Lisa Cox 12:18

It is yes and you sometimes, I want to call it the safety of the people that are younger, as to the safety of my for one of a better word, I’ll have to go to the people who know the disability sector and understand whether our disabled is relevant, but they, no, then the language so challenges, and I get it and you can even talk to them openly about whether it’s, your daughter and diagnosis and those sorts of things and it’s safe space, and they wouldn’t say those sorts of things and then every now and then you’ll be speaking to a stranger and they’ll say something stupid like that police officer used go, oh, no, the world is not. We have so far to go.

Chantelle Ellem 13:08

Yes, it’s heartbreaking.

Lisa Cox 13:09

Yes, I know. So but the good thing is that there is progress, there is– It’s painfully slow but it is happening and I will really was happening much faster than it is but every now and again, something happens might be so small, but I have to hang on to that and go, OK, it’s a positive and I look at that and take it as a small win and that’s just fuel for to keep going because if I got caught up in all the negatives and on what’s not going right and what’s not happening, then I swear and have absolutely no–

Chantelle Ellem 13:54

No drive–

Lisa Cox 13:55

To get going and creating change.

Chantelle Ellem 13:57

Yes, there’s hope in the baby steps. I think we just need to know that we’re moving forward at whatever pace and we’re having conversations, which is just key to moving forward and getting people talking.

Lisa Cox 14:07

Yes.

Chantelle Ellem 14:07

So going back to the time of your stroke, you had a successful career in corporate advertising agencies. How did you find the employment journey afterwards? What did that look like for you moving forward post stroke?

Lisa Cox 14:21

It was interesting and it’s humbly bullshit. It was absolutely bullshit and that’s part of the reason I worked for myself now. Sorry, so your listeners can understand. As you said, I was working in advertising and I came out of hospital with this skill set of– I knew I have all this disability and I couldn’t go. I did go back to work in advertising for a little while but because of my disabilities I couldn’t go back in full time. I knew that and I was cool with that but I knew that I still had a skill set and I wasn’t completely useless.

So to paint a picture, I had this this guy come into the house one day and he was the– I don’t know his official channel, but he was getting back into work guy. That’s what we’ll call him and he sat opposite me in the window living room and he was like, right so we’re going to get back to work right and he’ll cut his clipboard, he looked at me and made a few notes and kept looking at me and making more notes and went away and I’m like, right it’s going to get me back into work? And maybe there’ll be somebody in your marketing but not the level I was working at but that’s OK. We’ll understand. I could quite do that but and he came back and he sort of– Basically I forget exactly what job it was, but it was the equivalent of putting shelves and coals or something like that. Really, and I was so heartbroken and all they did was just see this. Yes, a medical diagnosis, a girl, brain Injury, wheelchair that’s it. Just nothing and that I don’t want to shit all over those sorts of jobs because they’re perfect for some people, and they love them and that’s–

Chantelle Ellem 16:23

No, they all have that.

Lisa Cox 16:24

They have value and I really don’t want to be disrespectful of that work to some people. so I thought, OK, all right, I’ll take myself to find some work in in whatever places so I thought Oh, I’ll work for disability organizations. They surely will understand the people with disability have value. So I started working for disability organization in marketing. I said, here’s my resume. Here’s my, everything I’m capable and they weren’t great. There’s a corner sitting at answer the phones and stuffs dumb envelope.

Chantelle Ellem 17:00

Yes. So frustrating.

Lisa Cox 17:03

And this sort of pattern continued. I kept working in– Working for disability organizations marketing departments, all sorts of jobs and I’d go in and say, here’s my resume, and prejudice, I’d walk into places then walk in my resume with qualifications and degrees and qualifications and it was a successful path but now I was rolling in in my wheelchair, same resume, same qualifications, and it was like, Yes, I’ve made you get the job, but it would be not really that sort of, when the quarter give you some mundane task. Like this is bullshit. Yes, this is absolutely bullshit, people with disabilities.

So I started working for myself and the idea was diffuse my lived experience in media marketing, communications. With my lived experience. Sorry, my professional experience media marketing communications, with my lived experience with disability because I saw this gap in the market that the advertising kind of wanted to know how to better be inclusive and representative of disability, but they had no real idea. So the result was this tokenistic stuff that was going out there and they were trying or credit to them that they were putting some stuff out there but they weren’t people with disabilities creating the content, or reviewing it or helping them navigate the nuances of disability language and–

Chantelle Ellem 17:59

It misses the mark.

Lisa Cox 18:55

So that’s what I started doing consulting to agencies and marketers till the lady yesterday want to know how and having come from that background. I was once that non disabled person who was like shit, I really scared of saying or doing the wrong thing and walking on eggshells. So I knew where they’re all coming from so that’s what I started doing and have been doing the so.

When I first started speaking to marketing and advertising agencies are like, by the roof, we’re not going to speak to you. This was 14 years ago when I started doing it, when I started my establishment business but more recently, I believe that thing you spoke you mentioned all those years back, can you come talk to us now?

Chantelle Ellem 19:45

So you like planted a seed and finally got there?

Lisa Cox 19:47

Yes. Like I mentioned much earlier in the podcast, I’m a bit stubborn. So yes, I’m a bit persistent. So I’m very glad that even though it took that long and there were really great people doing similar things here around Australia and overseas as well. So happy it’s finally happening again, it’s on these very small steps, but it’s something.

Chantelle Ellem 20:14

Progress is progress.

Lisa Cox 20:16

A long way to go.

Chantelle Ellem 20:17

I’d love to hear more about the amazing things you’re doing now as an advocate. Can you share some of your recent work to create change?

Lisa Cox 20:24

Well, sure. I didn’t do this one by myself. It was a huge team effort. Again, it’s in the media and pop culture space that was coming from that background of metering comms– communications, and knowing that journalists or content creators by their nature don’t go out of their way to be complete assholes but want to say and do the right thing, but just need some guidance on the right words to use.

So I work with media diversity Australia, for a great organization of working journalists and media professionals, who are helping to transform the media landscape to be more reflective of the society that I started so we put together over three years, we put together a handbook for journalists, who if they’re writing a story about disabled people can know what words we use here, or what phrases why you use or what’s the best way to photograph someone in a wheelchair, or how do I set up my studio in advance for someone with autism, for example, Guardian media, the mini handbook and it took three years because we not only use working journalists. Oh, spoke to a journalist but we interviewed some disability advocates and worked with collaborating with peak disability organizations as well and it was really key to have the voices of people with disabilities review the document and be central in the creation of the documents.

So it wasn’t just this document or written by journalists with no consideration by the people who knew what it was really about. Nothing intersectional as well. So indigenous disabled people and queers [unintelligible 00:22:30] across the board. So that’s a free download on the website as well for anyone else who’s interested. I’ve been using that in my presentations to advertising agencies and marketers for anyone, any content creators in marketing communication who want to represent people with disabilities better to in mainstream popular culture because having spent some time in communications by noting how important words are and even just something as simple as Oh, this was wheelchair bound, or all these risk confined to a wheelchair shaking that to use was a wheelchair user because I’ve told the story before that when I first acquired my disabilities, I was devastated because I had 24 years’ worth of stereotypes to my head. Just the stereotypes that your life is over bought all these things that you’ll never get married, you’ll never find a job, you’ll never this this this because I’ll be confined to a wheelchair. I’ll be bound, I’ll be starting using through years using the right word. Yes, for using the right language it doesn’t have to be wheelchair could be numb. That type of disability as well handled covers this through using the right language. Media are not the source of popular culture, a stone powerful in shaping narrative and social attitudes about disability.

Chantelle Ellem 24:10

Yes, that’s where we learn everything from, isn’t it? Like we take that language and we use that. We parrot that same language. So it’s nice to hear it done right and hear how you want it to be referred to so that’s so interesting, because I would never have ignorantly thought, for sure the difference between the two but I think it’s just so important to keep being curious and not be afraid to get it wrong. Like it’s– I’m sure I’m sure it’s upsetting, but it’s just be willing to learn constantly and just be like, well, this is how we prefer to be and let’s just move forward with that language. Yes.

Lisa Cox 24:47

Oh, yes. I’ve gotten wrong all the time and I just really have the guts to do well. It’s like I pay to make a few mistakes. Yes, if it’s done or if it’s meant with what I am trying to say.

Chantelle Ellem 25:05

It’s the intent, isn’t it? Like if your intent– When you’re intending– You’re not intending to be hurtful.

Lisa Cox 25:10

If the intention is good, yes.

Chantelle Ellem 25:13

Yes, everyone’s just trying to do their best. You can only do better.

Lisa Cox 25:15

That’s right.

Chantelle Ellem 25:16

When– With however you’ve been doing it. So within your intention is to do better.

Lisa Cox 25:16

Right.

Chantelle Ellem 25:22

Now the last thing is I wanted to ask is, what’s the number one thing that you’d want to change about the way as a society, we talk and think about disability?

Lisa Cox 25:29

I would like us to remind us to talk and think about disability, raise the bar and talk and think about it with more optimism but not in an inspirational porn kind of way. So and if any of your listeners don’t know what inspirational Porn was, Stella Young did a fantastic TED talk about it many years ago, and yes, go and watch it. It’s definitely worth watching but people with disabilities are capable of so much more and they’re given credit for. We really are and yes it– We either through the media, projected as this really pitiful in one of two ways.

This really sorrowful, pitiful sort of that or Paralympians [unintelligible 00:26:25] gold and no disrespect to Paralympian, some of them are my good friends, and they’re awesome people. I’ve been that person in the hospital is very sad. So both of those are true for representations, but they’re not the only representations and the full disabilities can be these incredibly ordinary people just live their lives and have families well but they can also achieve incredible things as I’m not talking about an inspiration or porn kind of thing but be like my friend, Carol, who’s a great lawyer, my friend [unintelligible 00:27:22], who is a doctor.

Chantelle Ellem 27:23

Doing ordinary things.

Lisa Cox 27:25

All sorts of incredible things. They’re not just be this sort of stereotypes, but the media dictates them to be so I certainly wish that we weren’t being pigeonholes by the media as being one on thing or another. So that was a very long winded answer to your question.

Chantelle Ellem 27:46

I like that with the power of social media, we get to see, we get to narrate the story a little bit ourselves. It’s not just this media’s story of the PDF of stories or the Olympic gold every four years at the Paralympics, or whatever it is. It’s like we get to see that every day stories and say some normality in living with an invisible disability. There’s more stories about it, which I think we will– I’m really grateful for.

Lisa Cox 28:13

I often say social media is bad for kids but I think it’s if I had kids of my own, I’d put them all on social media, because that’s just disability, but all sorts of diversity, body shapes and sizes and ethnicities and there’s so– I mean, there’s a lot of bad on social media. Yes, it’s just wonderful because the the diversity of opinions and body and body shapes and sizes and everything as well and especially for disability. I mean, I’m incredibly grateful that social media was around after I acquired my disability. It wasn’t straight away, which was probably just well, because of mental going on with my rehab, instead of scrolling through Instagram with died but yes, I’m very grateful for social media now, because I’ve found some wonderful like, 100 friends on that.

Chantelle Ellem 29:09

Yes, to feel less alone. I’m loving the actual language that my kids get from it and about inclusivity. Like, if I was to say anything about my body, they would just shut me down and be like, and I don’t do that often because I’m very aware of it. It’s just nice that they have such a different dialogue and we didn’t learn that as kids like we it was so different. So I’m really grateful for those changes.

Lisa Cox 29:31

That’s so good.

Chantelle Ellem 29:32

Thank you so much for coming onto our podcast and having a chat with us and sharing more about your story.

Lisa Cox 29:38

That’s OK. Great to be back.

Chantelle Ellem 29:42

Next season, you can come along again, we’ll have you back again. Thank you so much.

Lisa Cox 29:47

OK.

Chantelle Ellem 29:58

Thank you for joining us for this episode. It’s a topic that it’s so important to touch on. For more about invisible disability and the work Feros Care is doing on changing perceptions in our local communities, go to feroscare.com.au/podcast.

Disclaimer: The content and views discussed in Feros Talks podcast episode are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.