Disability advocate Lisa Cox is acutely aware that she’s lucky to be alive – as she says, it’s astounding that as a 24-year-old she survived a stroke which left her on life support for two months and thrust her into a future of disability.

It was 2005 when Lisa caught a rare form of the Streptococcus-A virus which led to a sudden brain haemorrhage while she was passing through Melbourne Airport.

“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,” Lisa says.

“They might have turned off my life support. So every day, to be able to advocate for people who perhaps can’t advocate for themselves, is a bloody privilege. It really is.”

Following the stroke, Lisa – a keen sportswoman who had just landed her dream job at an advertising agency – spent a year in hospital, lost her left leg, her right toes and had nine fingers amputated. She also lost some eyesight.

“I've had heart surgery twice and internal hip replacement. They are all the things you can see, I suppose, as disabilities.”

Job seeker

After the heartbreak and agony of her physical losses, Lisa confronted loss and pain in many other forms. One of the most momentous changes to her life was adapting to the realisation that society was now treating her differently, and this included potential employers.

One of the most powerful ways to normalise disability, she says, is via employment, but the reality for many people with a disability is that they are suddenly viewed in a different light.

Prior to having a disability, Lisa would walk into a potential place of employment, hand over her resume including proof of her two degrees, qualifications, and a portfolio of work.

“Fast forward a year or two and I found myself with exactly the same resume, with exactly the same portfolio of work. The only difference was I was wheeling in where I could, if I had a wheelchair access.

“The reactions that I got were substantially different and I 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’ve got disabilities? Physical disabilities? You look so different from what we normally see in media … that can't be right.”

At times, Lisa says, the work offered was ‘dumbed down’ or reduced in some way.

“I know my very first appointment with an occupational therapist who was getting me back into the workforce … he looked through my list of disabilities and said, ‘Okay, we’ll get you a job filing or packing some shelves or doing something really basic.

“And he was an experienced guy working in the field of disability employment.”

Looking out for invisible struggles

“I use a wheelchair and I have a prosthetic leg, but there's a heap going on upstairs – or the invisible disabilities – that you can’t see because of my brain injury,” Lisa says.

“I'm over 25% blind, I have epilepsy, chronic fatigue and I'm very uncoordinated.

“So, there's a lot you can't see and, I suppose, they are the bigger challenges to my day-to-day life, not my wheelchair or my prosthetic leg.”

Because Lisa was dealing with an acquired disability, she had to relearn everything she knew, and she had to learn how to ask for and accept help.

“It was so frustrating and I really had to swallow my pride. I was previously, and still am in many ways, a fierce, ambitious, independent woman.”

In her early recovery days, Lisa couldn’t feed herself, dress herself, or sit herself up in bed.

However, even more disheartening, was the fact that her brain was still functioning at a relatively normal capacity.

“My mind was going 100 miles a minute, but I couldn't even lift my arms and legs. Slowly but surely I just had to relearn all of those important life skills.”

Strong medication for the first few months helped dull Lisa’s physical pain.

“My hands and feet were quite literally rotting off so I was a bit of a space cadet.”

While the outward anguish was clear, the mental distress was another battle.

Lisa’s understanding of mental health, she says, has been a process of learning to “live comfortably with my new brain instead of fighting all the time”.

And she’s now on a mission to speak openly about mental health to reduce the stigma around anxiety and other mental health issues.

“I'm diagnosed with clinically diagnosed anxiety, PTSD, and health anxiety as well. So COVID has been horrible for a lot of people in the disability community, but it's been really nightmarish for people like me who have health anxiety and already are scared of germs.”

Her life, she says, has a clear purpose which is to “serve more people than just myself”.

Making disability more visible

While Lisa worked to adapt to her new life, her new way of being, she found she was most astounded by the way society as a whole treated her as a woman with a disability.

“I’m generalising, but the only two stereotypes we see of disability are 1) if you're a Paralympian and they're awesome people. 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.

“But there is this massive sector of the disability community who are just getting on with life – doing the grocery shopping, cleaning the house, cooking dinner, and taking kids to school.”

Lisa says people label her ‘inspiring’ because she has a disability, rather than for what she has done. But she acknowledges it can be difficult for people without disabilities to know when to use the word.

“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. 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.”

While we still have a long way to go, change is happening. Lisa says this is because we are breaking down stereotypes and expanding the pre-existing narrative around disability with more media channels and more podcasts sharing personal stories.

“We’re making disability more visible.”

Ditch the assumptions

Lisa wants to spread the message that people with disability are all different.

“Just because you know another guy in a wheelchair or another amputee doesn't mean they are anything like me – except for the medical diagnosis.

“Never make assumptions.”

And never speculate that they think their life is over.

“Because that is the stereotype I had when I found out my leg was going to be amputated,” Lisa says.

“I just cried my eyes out and thought, ‘I can’t possibly lead a fulfilling life.’ 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.”

Lisa says it’s critical not to “fall victim” and think about people with disability in a standardised way.

“If you do think in those stereotypes, and you do see someone who is an amputee, they don't necessarily need your pitiful sympathy.

Find out more about what Feros Care is doing to smash stereotypes around disability and work towards a more inclusive and accessible world here.