‘Say hello’

Carly Findlay and how she teaches us respect and empathy for those who look different

Carly is a writer, disability and appearance activist and speaker at the upcoming Australasian Medical Writers Association Conference. She is based in Melbourne.

Sometimes people can be insensitive and rude. Carly Findlay experiences this first hand almost every day. Most of the time people probably don’t mean it. They are curious. They want to know why Carly looks the way she does. Her facial skin is red and shiny. Carly can’t recall how many times people on the street have asked her questions like ‘What happened to your face?’ or ‘Did you get sunburnt?’ People often start questioning Carly before they even say hello. They stare and point at her. They give her the feeling of being different.

Carly lives with a rare genetic skin disorder called ichthyosis, which comes in many different forms and regularly causes her severe pain. Its most pronounced symptom is dry, scaling skin all over the body that can become easily infected. The skin lacks its protective ability to retain moisture. The moderate to severe form occurs in about 75 out of 10,000 babies born per year. Treatment focuses on the alleviation of the symptoms such as keeping the skin moisturised. A cure is currently not available. The social consequences of the disease can be even more challenging. Many patients experience isolation, low self-esteem and depression. Carly learned to accept her body as it is. She says one of the hardest things about living with ichthyosis is the way strangers commonly treat her.

Early on Carly decided that she didn’t want to remain silent about her condition, the medical aspects as well as social challenges. So, while she was doing her Masters of Communication and working for the Australian Taxation Office, she began writing on her blog about her life with ichthyosis. This was in the late 2000s. Now she is an accomplished writer and speaker. She has written pieces for The Guardian, The Age, Sydney Morning Herald, Daily Life, the ABC and many others.

She is also a regular speaker at conferences, writer’s festivals and the ABC radio. For one of her interviews with the ABC in 2012, a journalist introduced her as appearance activist and she decided to stick with it. In addition, Carly runs disability awareness training for organisations and schools. She received numerous awards for her published articles, her blog and outstanding engagement for people with disabilities.

Currently, Carly is finishing the writing of her first book. It is a memoir and will be published in early 2019. It’s called Say Hello. She decided on this title as she wants people to do just that, rather than stare, say something rude, or be at a loss for words when encountering people with a facial difference, skin condition or disability.

As a speaker of the upcoming conference of the Australasian Medical Writers’ Association Carly wants to promote more integrity in reporting about ichthyosis in the media. Articles on the disorder are often dominated by sensationalism rather than pure information. Carly wants to challenge the audience to change their attitude towards those suffering from ichthyosis and any other condition that makes them look different. People with disabilities should be treated with respect and empathy.

To read more about Carly, her work and her book, please visit her website: http://carlyfindlay.com.au