This month, we were very fortunate to sit down with Lisa Cox, a disability advocate and award-winning author, public speaker and media professional. Lisa is changing the way individuals, brands, businesses and the fashion industry embrace people with disability and is fostering inclusion and accessibility, as well as recognition of the individual rather than the disability.
CareAbout’s founder, Kyra-Bae Snell, caught up with Lisa to hear more about her journey so far, her disability advocacy and her exciting new projects.
Watch the interview:
Read the interview transcript:
Firstly, can you tell us a little bit about yourself and your story?
Sure! Sometimes I don’t really talk about disability because I want to just be the marketing professional, but I suppose in this particular instance and given your audience, my disability story is really paramount.
When I was 24, I got a rogue infection (Streptococcus-A) that caused a brain hemorrhage or stroke. So I spent the next three weeks in a coma and two months on life support, and over a year in hospital after that. So the first year, my left leg, all of my right toes, and nine of my fingertips were amputated (I’ve still got my left thumb). I had heart surgery twice, and a total hip replacement. So now I’m in a wheelchair full time and I have a prosthetic leg.
And they’re all the things you can see, I suppose. But there are tons of invisible disabilities from my brain injury, which is permanent. They can’t be fixed with prosthetics, or wheelchairs or anything like that.
I’m 25% blind, my speech has been affected and depending on what time of the day you’re talking to me, I slur my words more or less. I also have Chronic Fatigue and chronic pain – peripheral neuropathy is the fancy word for it. Plus arthritis everywhere; I have the mind of a 20-something but the joints of a 90-something year old woman!
So that’s my health story, I suppose. And that’s why I am accessing NDIS funding and things like that. But it’s certainly not my wheelchair or prosthetic, or any of the visible things that impact my day most. It’s all the invisible disabilities and conditions, which you can’t see.
You’ve written two incredible books, as well as writing prolifically for Huff Post and the New York Times. Can you tell us a bit about your career now and how things changed after your brain aneurysm – what it took to get back to writing and working?
My background was in advertising media. I got my degrees here in Brisbane and then I shipped off to Melbourne, where I was working for a number of years with an advertising agency as a copywriter. So for anyone who doesn’t know what that entails, I’d write headlines or scripts for TV ads, or pick the talent. So without shooting the commercial myself, I’d help with the production to a certain point and make it all happen for my national and international clients. I loved my work! And the fact that I got paid to do something that I loved was even better!
And then the proverbial * hit the fan and I suddenly I couldn’t write anything and all the tools of my trade were gone. My fingertips, my eye function, my complete brain function, my eyesight, things like that. So the very first thing I did when I got out of hospital after that first year, was to get a really cheap laptop and just sit at the kitchen table at Mum and Dad’s for as long as I could each day and taught myself how to type again, with my funny little fingers and eyes and everything like that.
So it’s been a very slow and gradual process, I didn’t come out of the coma and go, “Right! Time to write two books and do all these things and speak to 10’s and 1000’s of people“…I had to get the basics down; feeding myself dressing myself, even learning how to communicate again. It was all (and still is) a slow process, and I’m learning every day.
A lot of workplaces struggle to find the right words or images to talk about and represent people with disability. There’s a lot of fear around doing the wrong thing and offending people in the disability community, or doing it in a way that feels tokenistic. What would your advice be to individuals and businesses around leading the way for disability inclusion?
So going back to your earlier question, I suppose it’s something I should have added. It’s a lot of what I do these days, working with brands and businesses, and teaching them how to be inclusive without being tokenistic. It’s sort of combining my two worlds, my previous professional background in media and advertising marketing, with my acquired disabilities. So I found a way to mesh the two together. And there really is either a misrepresentation or an under-representation of disability.
So previously, we’ve looked at that from a socially responsible point of view, yes; the moral and ethical, right thing to do. But as a business person, and having spent a lot of time in boardrooms with other business people, who only really care about the figure at the bottom – the profit and loss statement – I try and push the point that it’s really, really smart business. Yes, it’s a nice thing to do. But it’s also profitable, and really smart business to include disability for so many other reasons than than just being socially responsible, which of course, is a huge and really wonderful part of it.
But you’re absolutely correct, brands are terrified of being tokenistic. And sometimes rightfully so because there have been some horrible examples of what not to do and things like that. And there’s always an angry person on Twitter ready to tear you to shreds, if you do it the wrong way.
So it’s a bit of hand holding that I do these days, and talk businesses through how best to be inclusive to represent disability without being tokenistic. So a really good example would be, consistency. And that means that, using Instagram as an example, you don’t just put up one post once a year featuring a disabled person or a reference to disability, but instead doing that consistently every week, every month – whatever fits into your posting schedule. Because when we walk out on the street, we don’t just see a disabled person once a year. It’s not a true reflection of our society.
Getting back to my earlier point about profitability, it’s a 20% market share that’s being ignored, because approximately 20% of our community have disability – one in five Australians. And that doesn’t include the millions more who are family members, friends, carers, colleagues, all those people who also want to see their loved one represented. So it’s a really big piece of the pie that their brands are missing out on by not representing disability.
Sometimes, as you know, the moral responsibility people might have is one argument for representing disability well. And often those organizations are already doing it because of personal experience. But the compelling argument for lots of businesses needs to be that bottom line – and by representing the disability community, they can get much higher brand engagement and market share. Would you agree?
That’s exactly right. Advertising that represents disability is decades behind but we are seeing some really great things happen with other minority groups, or under-represented groups – but there’s still more work to be done around disability.
I completely agree. Now, just to shift the topic slightly – at CareAbout, we help to guide people through the highly complex process of applying for NDIS funding or to find supports.
I know you had great people around you to help you navigate your way through the NDIS. Bearing in mind that it’s a highly individual journey and the needs of people with disability are incredibly diverse, what were some key things that helped you and your family through this process?
Yeah, going back to your earlier points, you’re correct. My family helped me and I know I’m very, very fortunate to have especially my husband and my Mum who both do all the paperwork for me – and I know there are plenty of people with disabilities who can handle it themselves – but as a result of my brain injury for me personally, processing organisation paperwork is not my strong point any more.
So I have had assistance with even just first applying for it and all of those sorts of things are really really difficult for me and I am so grateful for my family to step in. I’ve often made the comment throughout the various stages that this is so complex and so difficult for me, and I haven’t got an intellectual disability – I’m just a bit slow with processing. So I often feel terrible for people who do have more complex needs – how the heck are they getting around it, because it’s a nightmare for me! My needs are very different and I do have that support system in place.
But the NDIS has been wonderful for me in so many ways, and for a lot of people with disabilities, but the media, of course, tend to report on the stories that aren’t so good. And there have been some absolutely tragic examples. In my personal experience, I’ve found that getting funding for a new leg or a new wheelchair, or something that they can see, is much easier. Those those sorts of things are very easy to get approved, but they’re not the biggest challenges in my life. As I mentioned before, it’s all of the invisible disabilities – which my my GP and my neurological team will happily tell them about – but getting funding for those sorts of things is certainly much, much harder. And something I think they probably need to address down the track.
Absolutely – that’s a common experience, and hopefully one that the ongoing continuous improvement of the scheme will address because there are big barriers to entry and getting support – so the funding’s there but the access to it is not.
Yes, that’s correct and sometimes in a lot of workplaces decisions are being made for people with disabilities without any people with disabilities at the table in the room. That may or may not be why some of these things are falling through the gaps because they don’t have those people with lived experiences contributing to the conversation.
I suppose to give another example which is different but a similar idea – if you’ve got a bunch of all white men making decisions for people of colour and women, then that’s not okay. The same applies to disability.
Disability is a spectrum and we’re all different but unfortunately that hasn’t always been my experience. I get compared to the last amputee or stroke survivor, or the last person they saw in a wheelchair… but I know I’m nothing like any of them and neither is the next person you see who’s had a stroke, or the next girl missing a leg. So, we are all very, very different even if our medical diagnoses may be similar.
You‘ve already reached so many people already through your advocacy work. What’s next for you?
In the more immediate future in the next couple of months, I’ve got a couple of events coming up. I’m going back to Sydney to speak at Australian Fashion Week. So I’m thrilled that they have asked me to do some consultancy work behind the scenes to make the event itself more inclusive and accessible to people with disabilities. I’m also speaking on a panel down there about inclusive fashion and all the stuff that I’m always on my soapbox about! So that is going to be heaps of fun.
Then I’m coming back to Perth and speaking in another fashion event, which is all about how our identity is influenced by fashion and things like that. So that also will be a lot of fun – and I’ll get to wear some sequins!
Styling You – The Label and Christina Stevens are two brands that I’m doing some work for at the moment – some photoshoots and things like that. So that’s been heaps of fun. Any excuse to put on some some fun clothes and get my hair and makeup done, I won’t say no to!
But I would love to be collaborating with more brands and businesses, who really do want to learn about the really subtle nuances of inclusion, because it can be a bit of a minefield, and I’m speaking as someone who used to be on the other side of the fence, I totally get how uncomfortable it can be to want to say and do the right thing, but just not know how to do it.
I was the 24 year old writer in an advertising agency creating content, writing scripts and going, “Well, I’d like to do that but what if I get it wrong or what if I offend someone? So, no I’ll just do nothing instead.” And that was wrong of me to do nothing, but I do completely understand that fear. So that’s what I’m really trying to help brands and businesses with at the moment, to give them a few steps on how to do it well.