Carly Findlay is a writer, speaker, appearance activist and now author, as her memoir Say Hello hits bookshelves. Carly writes about her skin condition, Ichthyosis on her popular blog as well as various issues around accessibility and discrimination.

In this interview, Carly shares what it’s like to have a visibly different appearance and provides advice and links to helpful resources on how we can all fight discrimination.

The Thrifty Philanthropist: First, please tell us a little about yourself – what does a typical day look like for you?

Carly Findlay: I am an employee and a freelancer. I have a part time job at Melbourne Fringe as their Access and Inclusion Coordinator. On my freelance days, I might be writing for the media or for a book, following up on emails and invoices, or doing podcasts or radio.

I also deliver speeches and training, and this often involves travel. I try to make the most of my time by learning – I do this listening to podcasts or audio books.

Because I get so sore, I am grateful to be able to have such flexible work. And I can do a lot of it from bed. I recently gave a talk about online activism for chronically ill people, while wearing pyjamas. I stood on stage talking about working in the way that makes you feel comfortable. The PJs I wore on stage were far more glam than the old ones I wear at home!

TTP: Some readers may have never heard the term ‘appearance activism.’ How do you explain it and why is it so important to you?

CF: I was termed an “appearance activist” in around 2012, when I did an interview with Ginger Gorman on the ABC. It means I speak out about issues around visibly different appearances – disability, skin conditions and facial differences.

Appearance activism is important to me because I want equality for people with visibly different appearances – in the workplace, in the media, in fashion and in advertising.

People with visibly different appearances aren’t treated the same as other people. We are stared at, ridiculed, and not given equal employment opportunities. We are rarely shown in the media in an autonomous or non sensationalised way. I want to change this.

TTP: How did you first start out with activism? What challenges did you face in getting your voice heard?

CF: I’ve been writing for years on my current blog, though not about my skin condition (Ichthyosis), appearance diversity and disability until about 2009. The response was very positive so I kept writing about it whenever the need arose. That led to writing for a government website and then the mainstream. And writing led to speaking.

Through my work I’ve come to learn so much – by meeting other disabled people and also through extensive reading and participation on social media.

It can be a struggle not to be spoken over by non disabled people – especially parents. It is an absolute privilege to be published in the mainstream, so I’m forever thankful.

The expectation to be polite all the time, and just take discrimination and ableism can also be hard – especially when it’s played out in the media. As a woman – especially as a disabled woman – there’s a pressure to be nice so we aren’t seen as difficult, and future work isn’t threatened.

TTP: Please tell us about your book, ‘Say Hello.’ What will readers learn about your life?

CF: Say Hello is a memoir and manifesto about disability, appearance diversity, pride and resilience. It’s a story of my life from birth until now. However, there are also small stories from other people and advice for both non disabled people and people with facial differences, severe skin conditions and disability.

The main message of Say Hello is literally to Say Hello – rather than asking intrusive questions about a stranger’s visibly different appearance.

People forget their niceties when they meet someone who looks different. They launch into personal questions like, “What happened?” or, “Are you sun burnt?” Or even statements projecting their own feelings like, “I couldn’t handle looking like you”.

These questions and statements often come before a hello.

People are often also scared to look at or talk to me. They might have been brought up being told not to stare or not to speak to someone who’s different. I invite them to say hello.

For many people, it’s the first time they’ve encountered someone who looks like me. They show surprise and curiosity, and often rudeness. But for me, it’s often the fifth time that day I’ve encountered this behaviour. It’s tiring.

I want them to treat me (and others with facial differences, disability, and severe skin conditions) like they treat people they’ve met before – to say hello. I want to have real conversations and not feel their curiosity needs to be satisfied. I’d rather them not ask about my face, but if they must, please, say hello before anything else.

TTP: What other projects are you involved in?

CF: I do speaking and deliver training. I have also organised events – the ichthyosis meet in 2015 and Access to Fashion in 2018. Access to Fashion was a Melbourne Fashion Week event featuring disabled models. We had so much interest from the community and media – raising funds and getting enormous coverage. It was a lot of work, but so much fun. The atmosphere on the day was electric. The community aspect of my work is wonderful.

I also perform occasionally in a troupe called Quippings, and at festivals. I had a great time at the Melbourne Writers Festival last year – doing a spoken word about vicarious trauma.

TTP: What can people reading this do to fight appearance discrimination in their daily lives:
a. if they see it happening around them; or
b. encounter it themselves?

CF: Call it out. Say, “This is not OK”. If it happens on social media, link to articles about why this behaviour is not OK.

Boycott movies that don’t have authentic casting. The term ‘cripping up’ is when a non disabled actor is playing a disabled character.

Amplify the voices of people with visible differences. Share our tweets, read our work, buy our books.

If you encounter it yourself, remember it’s a reflection on them, not you. Write it down. Publish it on social media. Make a formal complaint if you feel comfortable.

Hold your head up high, be proud of your appearance, don’t hide because society expects you to.

Carly Findlay

TTP: What is the next big issue that you’re working to address?

CF: The next big issue I’m working on is having a rest. I feel I worked really hard last year, without much downtime, and I really need to focus on getting some leisure time back in my life.

But activism will always be happening. Issues will always pop up, and I will respond where I can. I never know when an argument on Twitter is about to happen.

My big project for 2019 is working on Growing Up Disabled in Australia – an anthology that I’m editing. It’s through Black Inc Books. We are calling for submissions from a diverse range of Australians who identify as disabled, chronically ill, Deaf or deaf and mentally ill.

TTP: What actions can readers take to play their part?

CF: There are some great resources online:

The Disability Visibility Project website, podcast and Twitter is a good place to start.

Changing Faces supports people with facial differences.

Greens Senator Jordon Steele-John is doing a great job in highlighting the need for a more diverse parliament, and is campaigning for a more accessible Australia.

Check out my list of some of the great books written by disabled people.

I also did a video on tips for journalists and editors for covering disability.

TTP: If there was just one takeaway message you wish you could give everyone what would it be?

CF: Before asking a curious and/or rude question about a stranger’s appearance or body, think about whether you’d like to be asked the same question. It’s better just to say hello than engage in a conversation that’s awkward for both of you.

Say Hello by Carly Findlay is published by HarperCollins Australia and will be available in all good bookshops and online from January 29.

Featured image credit: Kristoffer Paulsen