By Cat Rodie
Carly Findlay wishes that the strangers who stopped her in the street would just say ‘hello’. The 37-year-old appearance activist has spent her whole adult life fending off comments that range from well meaning but ignorant to downright rude.
“When someone sees me in the street, they’re so shocked, or surprised, or fearful of my appearance, that they forget their manners,” Findlay tells MiNDFOOD.
People ask; ‘why do you look like that?’, ‘have you been sunburned?’, ‘is there a cure for that?’ or they say ‘I couldn’t handle looking like you’. Others just openly stare at her.
Findlay lives with a rare skin condition, ichthyosis. It is a genetic disorder that affects around one in 200,000 babies. It makes her skin dry and painful and it requires daily treatments. Findlay is susceptible to skin infections, which often result in hospital stays. It also affects her appearance; hence the barrage of comments she gets from strangers whenever she is in a public place.
In her memoir Say Hello Findlay, who lies in Melbourne, has laid bare her experience of being disabled and visibly different. Weaving her own story through commentary on ableism, she hopes that the book will challenge the way non-disabled people think about disability.
As an activist, Findlay has been very vocal in calling out ableism when she sees or encounters it. “Ableism is discrimination towards disabled people. It includes social as well as physical created barriers. But it’s also about the attitudes, and the discrimination that we encounter,” she explains.
“I find the level of service, or the level of interaction I get is so different. People forget how to behave. You shouldn’t forget how to behave when you meet someone a little different.”
At times, the discrimination faced by Findlay has descended into abuse and trolling. In 2013 a photo of Findlay was posted on Reddit. Describing the moment in her book she writes; “My worst fear had come true. I was the subject of ridicule on the internet.”
But showing her grace and tenacity, Findlay decided to fight back – posting a lengthily reply to her trolls, educating people and claiming back her own story. The story made international news.
On the flip side of discrimination is what Findlay describes as ‘inspiration porn.’ “It’s a term coined by Stella Young, a disability activist, writer, comedian, who passed away in 2014. It means the objectification of disabled people for the benefit of non-disabled people.”
You don’t have to go far to see examples of ‘inspiration porn’, in fact Findlay notes that the mainstream media often feature these types of stories. “It’s often of stories about non-disabled people helping disabled people, without giving the disabled person a voice of their own,” she says.
How can we change the status quo? For Findlay, the answer is education and representation. “If you don’t know what’s going on with disability right issues, you shouldn’t really consider yourself progressive or inclusive,” she says. “Disability’s often the last thing, the forgotten part of diversity.”
‘Say Hello’ by Carly Findlay is published by HarperCollins Australia and is now available in all good bookstores and online.