Growing Bold and changing social attitudes

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Lisa is also on the Board of Directors at Just Sociale and is a Disability Affairs Officer at Media Diversity Australia.

Check out Lisa's blog or read her most recent micro-blogs on Instagram.

Lisa collaborates with brands and businesses who share her vision to better the representation in mainstream popular culture. This has taken her back into many corporate boardrooms and even on several fashion catwalks. Work with Lisa

Growing Bold and changing social attitudes:

Pete Timbs:

Welcome to the Grow Bold with Disability Podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most. To help us live bolder, healthier, better connected lives.

Tristram Peters:

I'm journalist Pete Timbs and I'm Tristram Peters. I work for disability service directory, ClickAbility, and I am a wheelchair user living with spinal muscular atrophy.

Pete Timbs:

Today's episode of Grow Bold with Disability is growing bold and changing social attitudes. And our guest is Lisa Cox, an award-winning media professional, author, public speaker, and amputee. In this episode we'll discover just how Lisa lost her leg, her toes and fingertips. How society started treating her differently. What it meant for her relationships and her career. And what she decided to do about it. Lisa, welcome to Grow Bold with Disability.

Lisa Cox:

Hey guys, thanks for having me on. Good to be here.

Tristram Peters:

So, Lisa, let's go back to 2005 and life was pretty good. You are a university graduate. You have two degrees, a Bachelor of Business, Communications and Media. You play lots of representative sport. Have moved into your own place. Have been promoted to your dream job at an advertising agency. And then you suddenly collapse in Melbourne Airport in a rush to hospital. What exactly happened?

Lisa Cox:

Yes. So, life was pretty sweet at the time. I was 24, at Melbourne Airport, flying home to see my family. Working in corporate and advertising agencies. And without any warning, as most strokes and brain haemorrhages are, I had a brain haemorrhage/stroke and went into hospital. After that I was in a coma for three weeks. Life support for two months and in hospital over a year the first time. I’ve been back many times since for surgeries and things.

But during that first year, my left leg, my right toes and nine of my fingers were amputated. I've had heart surgery twice and internal hip replacement. They are all the things you can see I suppose as disabilities and what not. I use a wheelchair, have a prosthetic leg, but there's a heap going on upstairs with all the invisible disabilities you can’t see because of my brain injury. I'm over 25% blind, I have epilepsy, chronic fatigue and I'm very unco-ordinated. So, there's a lot you can't see and I suppose they are the bigger challenges to my day-to-day life than my wheelchair or my prosthetic leg which are things you can see.

Pete Timbs:

So, let's just go back. Brain haemorrhage / Stroke. That's quite strange for a 24-year-old. It is a bit out of the ordinary. What do they think brought it on?

Lisa Cox:

I have no medical background obviously, but it was a rare form of the Streptococcus A virus. So, to this day, no one knows quite how I got the Strep A. Going on what one of the professionals told my parents it’s the sort of thing you pick up the supermarket or just random like a normal cold. But my immune system at the time, while other bodies may have just fought it off, my body just went “Whoa, let's just shut down and go to sleep and let it ruin everything.” It really made a mess of my day.

Tristram Peters:

For sure. I mean, in terms of your recovery, after all that time of hospital and after what you experienced, you had to relearn a lot of things. How frustrating is that? To be relearning things that you were previously able to do.

Lisa Cox:

It was so, so frustrating and I really had to swallow my pride. I had to learn to accept help and ask for help. So, I was previously and still have am in many ways a fierce, ambitious, independent woman and I can do anything.

But then at the start I’d have to ask for help tying my shoelaces or something as simple as that. And I couldn't even feed myself, dress myself, sit myself up in bed. And it was very, very frustrating because as people with different disabilities will know, your brain is still functioning at its relatively normal capacity, but physically your body is really not keeping up. So, my mind was going 100 miles a minute, but I couldn't even lift my arms and legs up a little bit, so it was very, very frustrating and slowly but surely just had to relearn all of those important life skills. Like a toddler I suppose, dressing and feeding myself again and all those sorts of things.

Pete Timbs:

What about your mental health at this stage? How is that? Because, as you say, your brain's working, but your body is not. How did you cope with that mentally as well?

Lisa Cox:

Well for the first few months, for several months, I was on a lot off really, really strong medication for pain. My hands and feet were quite literally rotting off, so I was a bit of a space cadet for several months there. But as people with some sort of brain injury might know, you just suddenly start realizing what exactly is going on. I found myself crying for absolutely no reason. And when I say absolutely no reason, in some ways I had good reason to, but at the time like I said just there being no reason. So, it's really been a learning process for me over several years, learning to live comfortably with my new brain instead of fighting all the time. But with regards to mental health, I know, going back a decade or two anyway, there was a little real stigma around things like anxiety and that sort of thing. So, it's something that I try and speak openly about.

I'm diagnosed with clinically diagnosed anxiety, PTSD, health anxiety as well. So COVID has been horrible for a lot of people in the disability community, but it's been really, really nightmarish, for people like me who have health anxiety and already are scared of germs I suppose. So mental health wasn't great bit I’ve absolutely got a lot better at getting it under control these days.

Tristram Peters:

Yeah, for sure. I mean, in terms of that stigma, it's not just mental health, but also more disability in general. You were thrust into the disability community. What were some of the hardest things to adapt to with your diagnosis and what you were experiencing?

Lisa Cox:

I've written and spoken about these sorts of things with my advocacy work, and I make the point that it's one of the, I wouldn't call it an advantage, but one of the ways I advocate is to compare my before and after life because I have clearer recollections of before than after. So obviously I had changed a lot both physically and all sorts of other things. But what really astounded me more was the way society treated me as a woman with a disability. So, whether that be the employment sector, socially, or so many other ways. Different scenarios obviously call for different examples. But I've written about this, something as simple as getting married or dating and those sorts of things. How publicly I was seen before and then after.

Pete Timbs:

What are some of the stereotypes that you came across or that you still come across?

Lisa Cox:

I suppose if I link it back to something like the media or popular culture, I’m generalizing here, but the only two stereotypes we see of disability are 1) if you're a Paralympian and they're awesome people. No disrespect. And if you are not that, then you must be this really miserable person whose life is over because they're now in a wheelchair. And something to be pitied or sympathy given. And there are absolutely some really, really sad stories out there. I’ve seen them personally through my work. I'm not discounting that, but there is this massive, massive sector of the disability community who are just getting on with life. Doing the grocery shopping, cleaning the house, cooking dinner, taking kids to school with the disability and that part off the community doesn't really get any airtime.

Pete Timbs:

Yeah, 100%.

Tristram Peters:

We're not inspiring for going and buying a carton of milk at the shops, are we? How do we normalise this?

Lisa Cox:

That's exactly right and Stella Young, who a lot of the listeners will know, coined the phrase ‘inspiration porn’, where sort of that objectification of people with disabilities for being inspirational. It can sometimes be difficult for people without disabilities to know when to use the word or something. And I always say, if you wouldn't use it for a non-disabled person then it's probably not right to use it for me. So, if I climb Mount Everest in my wheelchair, go for your life. That's inspiring because anyone who can do that, I think it's pretty inspiring. But if I'm just going down to the supermarket to buy a litre of milk, I don't need to be called an inspiration. I have been, unfortunately, just doing the grocery shopping, going to the gym.

“Oh, it's so good to see you out.”

“Oh, you are so motivating, such inspiration.”

I try not to get on my soapbox and lecture the poor person because I realize it's probably a result of decades of ingrained stereotypes in popular culture and all sorts of things which made them jump to that conclusion and say those sorts of things.

Pete Timbs:

Just while you're on that, have you noticed it's changed, even in the last year, two years, where people are more accepting for people with disabilities, you know. They're in the workforce a lot more. They are on the TV is a lot more. They are on our radios. We're seeing more of them, just podcasts like this, as opposed to what it was 5, 6, 7 years ago, when people were a little bit more ignorant to everything.

Lisa Cox:

I definitely have noticed a change which is so, so great to see. Obviously, we have a long, long way to go. But I definitely have noticed a change. And one of the reasons for that is looking back to who controls the narrative. And by that, I mean, 10 years ago or so, it was only the handful of media executives, for example, who were controlling the narrative around disability. And that is largely how we saw a lot of those stereotypes and things forming. But these days, guys like yourself have their own podcast. Their own media channels. I’ve got my own stuff going on. And we're really getting to change that narrative. Make disability more visible.

Tristram Peters:

In terms of that visibility, one of the most powerful things to normalize disability is obviously employment. With work for yourself did prospective employers treat you differently post your disability.

Lisa Cox:

Oh absolutely, and I've written about this before in that prior to disability, I would walk into a place of employment, hand over my resume, two degrees, qualifications, my portfolio of work. Fast forward a year or two.

I found myself with exactly the same reason, with exactly the same portfolio of work. The only difference was I was wheeling in where I could if I had a wheelchair access. And the reactions that I got were substantially different and obviously didn't always land the job. The fact, especially that I was working in a forward-facing media industry, sort of got a few raised eyebrows that say “What? You? Why? How and why would you possibly want to make yourself visible when you got disabilities? Physical disabilities? You look so different from what we normally see in media, that can't be right.”

Pete Timbs:

Were they giving you work that wasn't suitable for your qualifications like dumbing it down? You just go over here in the corner of shuffle some files sort of thing?

Lisa Cox:

That did happen. That definitely did happen sometimes. I know my very first appointment with an occupational therapist who was on the job of getting me back into the workforce. He sat there and looked through my list of disabilities, what I couldn't do and basically said, and I don't want this to sound offensive, pretty much said,” Okay we'll get you a job filing or packing some shelves or doing something really, really, really, really basic.” Now that's great for some people, it definitely wasn't right for me. And he was qualified, like a really, really experienced guy working in the field of disability employment. So, this, I suppose these low expectations we have of disables people, it's not just something that people really really far removed from the sector have.

Pete Timbs:

Yeah.

Tristram Peters:

Yeah, absolutely. Let's also change tack a little bit. Let's get some goss. What about relationships? How is the dating scene?

Lisa Cox:

Oh my God. Okay, I'll start by saying I'm now quite happily married for over 11 years to an amazing man. Can I swear because it was just terrible?

Dating with disabilities, I suppose in the past I'd met people through work, through sport and all those sorts of things. So, I now didn't play those sorts of sports anymore. I worked for myself. And all my ways of meeting people that I would have normally had really gone out the window. I wasn't much of a bar or club person because I had been run in too many times by drunk guys who just didn't know there was someone in a wheelchair behind them. Um, yeah, I was really fortunate in that I had a disabled friend who gave me the heads up prior to entering the dating world. And I did think on a few dates before meeting my husband. It wasn’t a case of first guy I met who showed interest. Yes, please. She basically gave the heads up and said, “be careful of the ambulance chasers.” At the time that really didn’t mean a lot to me, but I soon found out unfortunately, who the ambulance chasers are. They are the guys, or girls, who want to swoop in and rescue you and be your Savior. Because poor you with the disability life must be so miserable and life will be so much better with them. So be one of the ambulance chasers. And then to be completely honest, I also found the types of guys, not all, but some who were wishing to go on a date with me, how do I say this diplomatically, you got the impression they tried dating all the women in the non-disabled world and that didn't work. So now they are really scraping the bottom of the barrel. Ah shit, if I must. Okay, I’ll date a disabled woman. And it was blatantly obvious to me, and I couldn't get out of those dates fast enough, that they are two that I would definitely warn the guys and the girls out there to be wary of.

Pete Timbs:

You also wrote a really interesting piece for the Mamma Mia website about living with disability and how it equals living with relationship stereotypes and how people have a lot of trouble computing the fact that disability and a fulfilling relationship can actually work. Why was it important to write that story?

Lisa Cox:

Well, for so many reasons, my husband, the number of times he has been confused as my carer. Or people speak to him instead to me when I'm the one with the credit card is just infuriating, I swear. But I wrote that, I suppose to give your audience some context, I've got a wedding ring and engagement ring on my wedding finger and I was in a supermarket or a shop paying for something one day and the woman behind the counter exclaimed, “Oh, you are married. Oh, that's so good to see.” It was almost shock and surprise that a woman with disabilities could possibly be in a fulfilling relationship. And that certainly wasn't the first time it had happened to me. I remember, even when I told people that I was engaged or married, that same shock and surprise and “really”, “wow”, “good for you”.

Pete Timbs:

Inspiration porn almost.

Lisa Cox:

Oh, far out. Once again, I was able to compare my before life with my after life, and I'd been in some fairly long-term relationships before and not once did anyone say “good for you.” And not once did anyone call my partners at the time, “Oh, what a good man,” just for being with me. But my husband unfortunately today is congratulated and praised just for choosing to be with me and choosing to marry a woman with disabilities. It's a little bit, it’s a lot actually, it's a lot frustrating.

If anything, it fuels me to keep doing the work I'm doing in changing those stereotypes and speaking with the non-disability community about those stereotypes rather than just communicating within the silo.

Tristram Peters:

Yeah, yeah, and in terms then of all the work you're doing in changing those stereotypes, what would the one thing that you would want people to know about amputees and disability? What's the one message you want to just get people to realize based on all your experiences?

Lisa Coz:

With disability generally, it's that we are all completely different. So just because you know another guy in a wheelchair or another girl who had a stroke or another amputee doesn't mean they are anything like me – except for the medical diagnosis. In the same way that all Asian men or Indian women or Muslims are completely different. Never, never, make assumptions. The number of times I've had people come up to me and they find out I had a stroke and say, “Oh, my granddad had a stroke, I know all about it.” Oh, my God. You have no idea way. We are all so, so different. I've got some girlfriends in wheelchairs and where we are all good friends, we have completely different tastes in music and those sorts of things. With relation to amputees, I suppose if you either see an amputee or you're about to become one or something, don't assume that that's the end of life and life is over and so miserable. Because that is, unfortunately, the stereotype I had in my head when I found out my leg was going to be amputated.

I just cried my eyes out and I thought, this is it. I can’t possibly lead a fulfilling life now my leg is gone. But that's a load of BS. It's only through lived experience and learning that I can get on with a really great life, even if it only has one leg in it. Don't fall victim to thinking in those stereotypes. If you do think in those stereotypes, and you do see someone who is an amputee, they don't necessarily need your pitiful sympathy. They may be perfectly happy and loving their life. So, you know, if in doubt ask them if you know them well enough.

Tristram Peters:

So, Lisa, as you know, this podcast is called Grow Bold with disability. And we always like to ask our guests what does living a bold life mean to you?

Lisa Cox:

For me personally, serving more people than just myself. I'm so bloody grateful to be here every day. I'm not supposed to be. Medical professionals told my parents I wouldn't be alive in the morning. They might have turned off my life support. So, every day to be able to advocate for people who perhaps can’t advocated for themselves is a bloody privilege. It really is.

Pete Timbs:

Amazing. Lisa, thank you so much for joining us today here on Grow Bold with Disability podcast brought to you by Feros Care. And our listeners can find out more about Lisa, her books, her journey in the links provided in today's episode show notes. Lisa Cox, thanks so much for joining us.

Lisa Cox:

Thank you very much guys.

Pete Timbs:

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organization committed to helping people live bolder lives. We call it Growing Bold.

For over 30 years, Feros has been making it really for both older Australians and those living with disability. To find out more head to www.feroscare.com.au

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