Once when I was on my way to work I asked for a seat on the train, because I was sore. The man refused, kicking up a fuss. He asked me why I need a seat, I said I was disabled, and I’m off to work. He said because I’m working I must not be disabled, and so didn’t need a seat. No one spoke up.

A little while after that, someone served me at the post office through the after hours pigeon hole. She was visibly scared of me as she opened the door. And when I asked her if she was scared of my face, she said no, and then returned with my mail, saying , “I’m really sorry, I wasn’t expecting it”,

The next year I sat on the train, looking at my phone, and the woman sitting next to me glanced over, saw me, and gasped. She got up and left. She was embarrassed but I was humiliated.

Earlier this year a group of young girls were staring at me in a cafe, and after a lot of me smiling, trying to make conversation, and then eventually telling them that staring is rude and I’d like to eat brunch and talk to my friend in peace, the adult who was with them told me she’s not their parent, that she works in disability, and that one of the girls has a certain medical condition – as if that justified the behaviour.

And then there’s the countless taxi drivers who have refused to take me, because they’re scared of my face. Sometimes they tell me but mostly they make an excuse that can’t be proven as discrimination. But I know it is.

When someone shows you that they’re scared of your face, it is devastating. I can’t explain the exhaustion and self consciousness that comes with this – even as a confident adult, expectant of this behaviour.

And then, when I write about it online, I get that secondary ableism as i mentioned the other day. People doubting that it happened; saying I’m overreacting or lying; suggesting that person had a bad day, or that I expect too much; or that of course kids are going to be honest and say they’re scared of my face. It makes me not want to share my experiences publicly.

I hope that the posts I’ve shared this Face Equality Week (and in Ichthyosis Awareness Month) have helped you think and change your behaviour and perceptions, and believe us.

I’m not posting this to gain sympathy. I am absolutely aware of my privilege compared to many others – and I can say that (perhaps because of my public profile) the majority of interactions I have with strangers are positive. But it doesn’t mean these encounters, and then the gaslighting that comes when I talk about them, don’t hurt.

Has this post helped you or made you think? Will you use it your school or workplace? Please consider buying me a drink.