19 December 2016

On guard. I'm aware of the need to manage other people's reactions towards me.


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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  1. Definitely time to find a new cleaning agency, Carly. I'm sorry that you have to experience this.

  2. You know what? I truly hope (because I am pollyanna and I have not had to deal with what you have had to deal with in people throughout life) that you are sent (by whatever means - agency or divine) a cleaner who is the absolute right person to clean for you. Step it up at the agency regarding what they are doing to meet the needs of their client - it isn't good enough...

  3. Interesting,I experience the same things in my electric wheelchair, people look at me like I'm from another planet,women will sometimes walk away from a sales counter when I approach.
    Yet when I have my companion dog with me I'm more people see me as less threatening, And yes I can confirm my dog picks up more chicks than I do

  4. Carly, I am horrified at the actions of both the individual and the agency. If I could wave my sword of fire and smack back the bastards on your behalf I would. As the breadth of the world lies between us can I just offer you recognition. I see you. I see the micro-aggressions and see your ongoing battle in facing them.

  5. I told you before I always get away things from your blog for my own life and I don't have a visual difference (apart from looking "lesbian" appearently..But never mind). I know this being on guard through my autistic son. It isn't visual, but it's a difference that shows when he speaks to people, mingles with kids, or has a meltdown in public that appears not "age appropriate" to people (usually sensory issues). People will stare, wonder, snigger, or, and it can be just as annoying get all curious and interested - "autism aware" - about it. Then sometimes I engage (education!Opportunity!) and try to correct (they blab on about all a the stereotypes..). But it's exhausting. It is NOT acceptance. Even the totally positive reactions can take away from the context the encounter, the conversation was actually about. And I don't want to be on autism awareness duty all the time. And if my son doesn't want to make his whole life about autism advocacy and education, he shouldnt either. I am sorry this happened to you with the cleaners and all the other incidents..Constant guard..Must be exhausting :(

  6. I thought about you and your recent posts about being guarded. We are conducting interviews at my office and it's my job to go out to the reception area and greet the candidates. Because it's winter here, my hands are very rough and dry so I find myself not offering to shake the hands of the people when I go out to greet them, which I suppose could be considered rude. I didn't even realize I was doing that until today. Why am I ashamed to shake their hand? Lots of people have dry hands. Anyway, I'm going to try and make a conscious effort to extend my hand no matter what so thank you for once again giving me a new perspective. You always make me think...in a good way. :-)

  7. Good article. As an excleaner I'm also concerned that the cleaners have such different standards that you can tell it's not the same person. Perhaps the two situations have the commonality of not caring enough.

  8. Thanks for sharing. I do not know what it is like to be visibly disabled. I experience hidden disabilities. I feel the need to hide it as well as I can, conflicting with wanting to be proud of my wonderful disability tribe and bringing their potential to light. But ableism is sooooo pervasive that sometimes when people find out you are disabled their ears close and their perception of you becomes coloured. And so what if sometimes we might be "bitter" are we not allowed to have feelings? My unique little brain does some things really well (well above average) and other things poorly but I still have normal emotions and being treated like an incompetent person hurts - as being stared at and mocked I'm sure does too :(

  9. Unless someone has experienced these thing themselves Carly they cannot understand. Having grown up with a sickly mum and now having a daughter with allergies I can empathise with you. It's tiring and difficult, only wish people had more empathy xx


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