The cleaner was due today. Last time they came, they were scared of my face and left.
There is usually a different cleaner each time. I know this now I work from home, and also because of the varying quality of the cleaning.
Part of me wanted to stay home, so I could greet them, smiling in a friendly way, and monitor their reaction.
Most of me wanted not to be home to avoid being on alert, avoid the explaining of why I look the way I do and trying to make a stranger feel comfortable about my appearance.
I do just want to get on with my day - do a good job of the work I'm required to for my day job. But I know I'm aware of the need to manage other people's reactions towards me.
This is tiring.
I acknowledge that of course this doesn't happen all the time, and the majority of interactions are positive.
But when something like the cleaner being afraid of my face and leaving the job happens, or when I'm abused by a taxi driver, or even when I'm surrounded by high pitched children demanding to know what's wrong with me I can be on guard. I notice sniggers and glances from my peripheral vision. I see the gaping mouths and hear the sudden silence as I enter their space.
I jot down the cab numbers before I've put my seatbelt on, and I put a smile on so as to not scare the children.
These are the things I've become accustomed to doing because I look different.
I try to be polite at all times. But I cannot guarantee that I will respond to each microaggression (or outright discrimination) in a chirpy, educative way. But that's often expected of me. Often by people who experience Ichthyosis - as a carer, and sometimes a patient.
"You should have welcomed this opportunity to educate," I read. It's bitterness, they tell me. There's also the idea that I'm not comfortable with my appearance if I see stares and comments and fear as negative experiences. (Wrong.)
There is the peanut gallery of people who look on the bright side. Usually people who have never been judged by their appearance alone. "They probably didn't mean it." "It's natural to be curious." Even the "Maybe you're taking things too personally?"
And then there's always my own high achieving self telling me that the way I respond will shape a stranger's experience of dealing with a disabled person or someone with a facial difference. I might be the person to make them never want to interact with someone like me again. It's a huge responsibility to get it right. Amd I don't want to be seen to be scary and difficult. That angry red woman. Because I'm not.
The cleaner never came today. I will be on guard another day. And I wonder if something came up, or word has got around the agency to avoid the angry red woman who cried discrimation.
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