Carly Findlay, who grew up at Walla and Gerogery West, is a proud disabled woman who doesn't want to change or hide her face:
In December last year, my former house cleaner was so scared by the sight of my face that she walked out of my house - without cleaning it. She didn't know how to handle my appearance, her supervisor said. The cleaning agency dropped me as a client when I used the D word one too many times. But their behaviour was discriminatory. Of course, they didn't think so.
It took a couple of months to find a new cleaner, and each one I communicated with, I felt the need to explain my facial difference and apologise for my skin.
Since that incident, I've had some awful reactions to my face. Some reactions are more extreme than others, but in some way or another this is what I deal with daily. And I never get used to it.
I've had a stranger laugh at my face several times at a music show. Her friend justified the behaviour when I called it out by saying it's because she hasn't seen someone like me before.
A young man commenting on a photo of my friend (also with a facial difference) and I via Instagram told her to get plastic surgery and take a more attractive photo next time. He was mortified when I made his (already public) comment into a new post on Instagram, and informed me he's never said anything like this before. Of course he's a nice guy - a nice guy who made a conscious choice to tell strangers to change their face.
I'm told it's understandable people are scared of my face, when they haven't seen it before. But I'm getting tired of this excuse.
For you, it might be the first time you've seen someone with a facial difference. You're surprised, shocked, disgusted, pitying, curious, scared and even amused. I see the range of emotions on your face in the first few seconds of our interactions. Your face moves in slow motion. But for me, living with a facial difference, and your reactions - are my every day. And responding to rude, curious, and even sympathetic and concerned questions is tiring.
Strangers who ask me if there's a cure for my skin condition aren't coming at it from a medical perspective. They don't even consider the pain; they just couldn't imagine what it's like to look like me, and hope my face can be fixed (and yes, they've told me this too).
These questions are like bullets. One after the other. And the people asking them have no idea of how inappropriate they're being. They feel entitled to an explanation.
I have the type of Ichthyosis that makes my skin fragile - it's a wonder I'm so resilient.
When I speak of the reactions some people have to my face, my friends are shocked. They don't believe it. But these things do happen. Some people think it's their right to know what's wrong with me, and expect me to be polite when answering them.
So when I was asked to appear in the second season of ABC's You Can't Ask That, I jumped at the chance. I loved the first season, and thought this could be a good way to publicly address the questions and comments I frequently receive from strangers who cannot deal with my facial difference.The questions asked of me on You Can't Ask That are all questions (or variations of) that I've been asked before. I get asked a combination of ridiculous, funny and rude questions most weeks.
Once, a man on the train asked if I'd been licking lollies - "is that how your face got so red?"
Another time, a woman in an African restaurant asked if I wore "traditional African makeup" to dine at the restaurant. I don't know much about traditional African makeup, but I don't think it's anything like my face, and as if I'd appropriate African culture anyway.
I've been told my face would be too much for a group of young children to handle, so it was best I didn't attend a Cubs group meeting. I attended anyway. And the Cubs loved me – one 7-year-old even wrote me a thank you card for teaching him about diversity.
While I know You Can't Ask That teaches viewers about our conditions, I also wanted to make the audience uncomfortable. I wanted to show them how tense, upsetting and shocking it can be when people like me are asked these confronting, intrusive questions. I want them to think twice about the appropriateness of asking.
You Can't Ask That is about marginalised and misunderstood people taking ownership of these questions, and raising the broader communities expectations about us. So many friends have said what an important show this is. We're being seen, heard and valued – when most times people either want to stare, look away, ridicule us or ask inappropriate questions.
"I'd like to be inconspicuous when I'm going about my day, but instead I am extremely 'visible'," my friend, Ellen Fraser-Barbour, told me. She stars in the show too.
"On a daily basis, I'm stared and pointed at because of the way I look; people make blunt and hurtful assumptions about my disability and speak down at me in a patronising and demeaning way", she said.
For Ellen, going on the show "was my way of having a voice, adding mine to the many valued diverse perspectives about what it is like to live with facial difference and my way of dismantling stigma and discrimination."
The facial difference episode (I haven't watched it yet - I'm saving it for the TV screening) shows viewers that these questions and assumptions about us hurt.
And in fact, we do take selfies, and we're OK with our unique appearances, even when others aren't – or don't expect us to be.
- Carly Findlay is a proud disabled woman who doesn't want to change or hide her face. She writes at carlyfindlay.com.au, and tweets @carlyfindlay.
- The facial difference episode of You Can't Ask That airs on ABC, 9pm Wednesday May 3, and is also on ABC iview.