Redefining Disability: Changing the Story

By Lisa Cox

It’s been almost 20 years since I had my stroke, aged 24. I was a fit and healthy non-smoker with none of the usual risk-factors for a brain haemorrhage.

I loved my career copywriting in the advertising industry, winning awards for my work, being promoted and all the other hallmarks of a successful career. But everything changed that morning when, at Melbourne airport flying home to see family, I collapsed.

Like many stroke survivors, I don’t remember this time, the months before and after that day have also been wiped from my memory. Unfortunately, however, my family recall that time very well. Mum, dad, my younger sister and brother were told to fly to Melbourne immediately because I was not expected to be alive in the morning. I was put in an induced coma for three weeks and life support for two months.

Every cell in my body had died and every organ shut down. At one stage, my parents were told that they may need to turn off my life support and the head of the largest intensive care ward in the southern hemisphere said that I was, “by far the sickest person there.”

Tests revealed that my stroke had been caused by a Streptococcus-A infection which was, as another specialist put it, “bloody bad luck.”

My stroke was really just the catalyst for the proverbial hitting the fan and things really snowballed from there. My skin now resembles a patchwork quilt with all the scars and missing pieces. Surgeons amputated my left leg, all my remaining toes and 9 fingertips. I also head heart surgery twice and a total hip replacement. Today, I use a wheelchair full-time and wear a prosthetic leg.

Because of the scarring on my brain, I had acquired multiple invisible disabilities including epilepsy, vision impairment, constant nerve pain, chronic fatigue and poor proprioception. Anxiety and PTSD have also played a large part in my life since stroke and the symptoms of my neurodiversity have become worse (such as memory, focus and concentration).

In the early days of recovery, I had to learn everything again. Brushing my own teeth, dressing and feeding myself, even sitting up in bed by myself. It all had to be relearnt. But these days, I am 100% independent, except for the driving and walking parts.

I sometimes catch myself thinking about the single events or collection of moments that made my life play out the way it has.

I vividly recall that day in hospital when they told me I was going to have my leg and 9 fingertips amputated. I’d be physically disabled for life.

Or the day they told me I was now over 25% blind and would have to spend the rest of my life in a wheelchair.

To be completely honest with you, I was devastated. But I later realised that was because I had over 24 years’ worth of media stereotypes in my head.

Stereotypical messages that told me my life was doomed to be one of deep sadness and to evoke pitied – unless I became a Paralympian of course.

There were also those stereotypical messages that told me and the rest of society that people like me (with disabilities) would never get married, find meaningful or gainful employment, have a social life and so much more.

If these were the thoughts going through my head, I assumed the same was true for many other people in our society.

Unfortunately, my assumptions were correct, and I experienced, first-hand, the affect that these stereotypes were having on social attitudes all around me.

Suddenly, I was being congratulated just for being out in public.

People reacted with visible shock upon discovering that the gorgeous, well-dressed man standing beside me was indeed my husband and not my carer. Their jaws really hit the floor when I told them we met after my stroke, initial hospitalisation and many surgeries

I was being told that I was brave for going to the gym and remarkable just for doing the grocery shopping, going travelling or doing other very ordinary things.

Of course, nobody was being malicious, but it was clear that society really didn’t expect much from me now that I had disabilities.

Mark Twain famously said that the two most important times in your life are when you are born and when you find out why.

“Find your why” is often thrown around as a cliché but that’s only because there’s so much truth in it.

My why has become to challenge and change the discourse around disability for current and future generations.

Every year, thousands, if not millions of people are having a stroke, acquire a disability or being diagnosed with neurodiversity like Autism or ADHD. Every year countless numbers of parents are told their child has been or will be born with disabilities.

I don’t ever want any of them to feel like I did in 2005. Be it in the healthcare system, employment space or somewhere else.

Looking down at my body, wrapped in hospital pyjamas, I knew there was nothing I could do to change my visible and invisible disabilities. But I could use my professional background to help change the way disability was being represented in mainstream popular culture like advertising, media, marketing, fashion and film.

These industries are so incredibly influential when it comes to shaping social attitudes. I’d spent so many years creating visibility for my clients, their brands, products, services and messages. I know that those same principles could be applied to public perceptions of disability.

I wasn’t a lawyer, doctor, engineer or politician so I decided to stick to what I know best – the business of disability representation.

I sat with a friend one day and brainstormed parts of popular culture where there was little or no representation of disability, or where that representation was stereotypical, tokenistic and damaging.

If I could have waved a magic wand, I would have gone straight to political leaders or Hollywood and the Disney executives, but I was only one person. My friend reminded me that the fashion industry was, as she put it, “low hanging fruit” but also incredibly powerful when it came to shaping social attitudes.

I researched Fashion Weeks around the world in places like Milan, New York, Paris and others. There had been models with disabilities on those catwalks for years. But in Australia when we were on the world stage, disability was completely absent.

Despite having no experience of the inner workings of the fashion industry, I contacted the organisers and with others, created Australia’s first Fashion Week in 2021. It wasn’t the biggest thing to ever happen for disability human rights, but it was a small movement in the right direction for inclusion. I’m proud to say that this inclusion in the fashion industry is still happening today and growing.

Having once been unable to speak or write, I recognised the immense privilege in having those skills retuned to me and I was even more determined to use my voice to create change – not for myself but for the generations of people with disabilities that would come after me.

In 2022, I did a TEDx Talk about why diversity is good for business and outlined the benefits of disability representation in advertising. In my experience, the business case for disability was missing from the conversation and if history was teaching us anything, it was that the current method (all about the charity model of disability that focused on deficits and doom or inspiration porn) wasn’t working.

The saying goes that, “what other people think of you is none of your business,” and I agree with that to a point. While I couldn’t care less what my trolls and lurkers have to say about me, what people think about me as a person with disabilities and what people think about the disability community has quite literally become my business today.

I love to collaborate with others, around the world and across Australia, who share my vision for change. Together we work towards systemic, sustainable solutions. I’m following the incredible work of amazing disability advocates that came in the decades before me. I am absolutely thrilled to see the new generation of changemaker coming through as well!

I’m currently doing my PhD with Griffith University and researching how visibility of disability in advertising (on both sides of the camera) can shape social attitudes and improve our social outcomes, such as employment.

Since my stroke, I have met and married the world’s most incredible man and we are living back in Brisbane with our dog, Louis. I loved my life before the stroke, but I still love it now, albeit with significant challenges. It shouldn’t have taken me dying twice in hospital to realise the fragility of life but here we are!

Read more blogs from Lisa here.