'When I say I'm disabled, people don't think I am'

Appearance activist Carly Findlay wants to change how Australians think about disability. Her ongoing work in the advocacy space has now been honoured with a Medal of the Order of Australia.

Medal of the Order of Australia recipient and appearance activist Carly Findlay.

Medal of the Order of Australia recipient and appearance activist Carly Findlay. Source: SBS News

She’s a writer, speaker, and activist who has garnered tens of thousands of followers on social media.

She’s fought online trolls, taken a taxi company to the Australian Human Rights Commission and written her own book.

Carly Findlay’s disability has never stopped her, something, she tells SBS News, goes back to her childhood.

“I think that my parents have really helped raise me in a way that I'm proud and confident.”

“I think my dad probably regrets me being too assertive,” she jokes. 

Writer, speaker and activist Carly Findlay.
Writer, speaker and activist Carly Findlay. Source: SBS News

The 38-year-old was born with a rare genetic skin condition called ichthyosis form erythroderma, which leaves her skin incredibly dry and red.

She says some people don’t consider her ‘disabled’ because they see disability in “another way”. But, she says, all disabilities look different.

“I'm disabled by society's barriers that they put up, by the low expectations of me.” 

“Our bodies aren't disabling, it's society that is disabling.”

Because of ignorant attitudes to her appearance, Carly has often been the target of discrimination or bullying.

Just last month, she took to Twitter to recount the moment a taxi driver harassed her in his cab.

“The driver asked what happened to my face, I said nothing,” she posted.

He asked her multiple times before saying he didn’t want her in his car as he’d “have to clean it”. 

It is shocking accounts like these that have become commonplace for Carly. In 2013 she took a taxi company to the Australian Human Rights Commission after a similar incident.

And while she says this time the taxi company was very apologetic and kept her up-to-date with what was happening with the investigation into the incident, there is “still an issue”, and disabled people are still discriminated against on a daily basis.

Ms Findlay is very active on social media, with more than 20,000 followers on Instagram.
Ms Findlay is very active on social media, with more than 20,000 followers on Instagram. Source: SBS News

“We should be able to get into a taxi and have them take us where to go without them questioning us, our medical history, or being fearful,” she says.

They can be exhausting, and hurtful experiences, but ones that have made Carly even more determined to make sure others don't have to go through the same.

Award shows people 'what is possible'

Her work so appreciated and respected it has earned her a Medal of the Order of Australia for her service to people with a disability - an exclusive list that this year recognised 837 "outstanding and inspirational Australians".

The honour was announced on Sunday. 

From blogging to co-hosting a podcast, and working as the access and inclusion coordinator at the Melbourne Fringe Festival, Carly’s influence in the space can be felt around the country.

Overwhelmed and excited by the honour, she says she hopes “this award can show other disabled people what is possible.”

She wants to use her platform to make people with disabilities more visible in society, and improve the discussion around disability in the country.

“I want to talk about how disabled people need to be better represented in the media … and that employment for disabled people needs to increase,” she says. 

“We need ample chances, equal chances to succeed in the workforce, and in society as a whole.”

'We are here, we are proud'

Carly is currently editing the book Growing Up Disabled In Australia, an anthology of stories from 40 contributors who all identify as living with disability, to be released later this year. 

“So many people think disabled lives are not worth living, that we must be sad, that our lives are a tragedy,” she says.

“That's not true, we are here, we are proud, we are living ordinary, and extraordinary lives.”

When asked what she thinks her biggest achievement has been, she sighs. 

“That’s a really tough one,” she says. 

“I think that my greatest achievement might be defying the expectations of those who think I couldn't possibly like the way I look, or achieve what I have because of how I looked ... and getting on, and doing it anyway."

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4 min read
Published 26 January 2020 at 7:41am
By Stephanie Corsetti, Amelia Dunn