It’s not actually that complicated, the Border-born woman like so many others shares what she’s wearing on social media. 

But unlike Instagram ‘influencers’ no one is splashing her photos in magazines or papers – no matter how stylish she dresses. 

Instead, sharing her outfits and images is a subversive act, in defiance of a world that wants to medicalise and ‘other’ her.

But Ms Findlay would rather people saw her clothes, not just her genetic skin condition and has started a Melbourne International Fashion Festival runway, Access to Fashion, to bring together those with a disability who love fashion. 

“By putting our photos on the internet, by taking part in this social media space, it’s a political act because so much of the time we’re told our bodies aren’t supposed to be seen by people,” she said.

“I really love fashion, I really love wearing different clothes, especially bright clothes and posting them on Instagram.

“There’s a real community of people on Instagram, Facebook and social media in general who enjoy fashion and share what we’re wearing – particularly disabled people – but you don’t see that in magazine or mainstream media.

“So we’re making our own media.”

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Ms Findlay said in many ways the fashion industry is inaccessible to people with disabilities, physically in accessing stores, how staff react to disabilities, or mentally in representation. 

She said being inaccessible is bad business. 

“We’re one fifth of the population, the ‘disability dollar’ is quite big,” she said.

“But if you bought a magazine, consumed any media or went retail shopping, you would think that the disabled population was almost non-existent, or only existed in a medical setting.”

Ms Findlay said visibility helps prevent people thinking of those with a disability outside the medical realm.

“An example of being medicalised is I will give a speech at an event I will tell my own story on my terms and I will talk about how I’m often medicalised and how my body is up for discussion,” she said.

“After that speech when people come say hello they will ask me extremely personal questions that they don’t ask the other speakers like ‘would you consider aborting your baby?’.”

The Access to Fashion event will run in September.