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Yorkshire Labour councillor forced to stand down after flare-up of chronic fatigue since having her first child - due to 'archaic rule'
- Thread starter Sly Saint
- Start date
It's an issues with many other job areas too:
- if workplaces can't find ways to ensure that all types of people are represented then it is a vicious circle of the environment more and more favouring the ablist.
I don't know the details of this particular one, but in todays day and age there really should be a lot more options further on for remote and paired/deputy type things.
If noone who has an enegy limiting condition can have roles where they can input into the set-up to make things more so that those with energy-limiting conditions have a voice then, given most who don't can't be bothered to hear the 'complexity' (it ain't that hard after they've bothered to listen, just diffeent to putting in a ramp) won't get it right, it will never be understood.
I will note too that we've an issue for those who are severe vs being represented by less severe pwme even often - because they assume they can imagine the difference when they can't. And there are very different needs and expeiences - for example the 'comes into my face rudeness' that since I got more severe happens because of the BPS rhetoric and the voice issues meaning that people who pretend they are nice people to others realise they can get away with once they think you won't be believed if they are out of order to you for no reason begin to do. Like that 'nice old man' who walks past and shouts a trope at you and gets in your face, because they know they can lie to someone else's face and say 'ohhh but I meant it nicely, bless em with their being emotional it must be the wrong end of the stick' basically being given permission to now be abusive to us by that effect that others can choose to now doubt the sick person's testimony.
Those who are less severe tend to not just not get this because they aren't there yet but also don't believe it because they fall into the trap of thinking as they also have ME then it must be something particular to the other person (and not due to the level and the fact that person can't avoid it coming at them because they don't have good days where they can defend and advocate etc, unless - and they can advocate if in an environment surrounded by those who seek to understand what they are communicating ie make it easier rather than hard to get their words out).
Putting people in positions that are only calibrated to their disability in drone work, and not in 'say' and 'power' is increasingly important to stop this paternalism from happenning. But it does seem to make for a difficult dilemma in those who are on the other side of the coin and think it is somehow discriminatory to re-organise certains jobs and rols to remove the 'work' part (as they see it) whilst keep the 'input' part. Someone who hasn't experienced it though cannot replace someone who has I now realise, and unless that is underlined then even those who have experienced it get dorwned out and not listened to by things like 'well if you can't contribute the legwork' etc being a barrier to voice participation.
I know that is all lengthy but it makes me think that for energy-limiting conditions then a new adjustment, like when you see on TV programmes in the US where a deaf person might have a senior role and an interpreter with them, is possible and just for some reason not thought of. For example if you had pros who could be great at the admin (and great at being a genuine advocate ie listening to understand) paired with the person who can input the thinking and knowledge and experience - which perhaps allies could begin to try and work out how to oversight and develop - then we'd have genuine energy-limiting condition specific ways of being represented?
- if workplaces can't find ways to ensure that all types of people are represented then it is a vicious circle of the environment more and more favouring the ablist.
I don't know the details of this particular one, but in todays day and age there really should be a lot more options further on for remote and paired/deputy type things.
If noone who has an enegy limiting condition can have roles where they can input into the set-up to make things more so that those with energy-limiting conditions have a voice then, given most who don't can't be bothered to hear the 'complexity' (it ain't that hard after they've bothered to listen, just diffeent to putting in a ramp) won't get it right, it will never be understood.
I will note too that we've an issue for those who are severe vs being represented by less severe pwme even often - because they assume they can imagine the difference when they can't. And there are very different needs and expeiences - for example the 'comes into my face rudeness' that since I got more severe happens because of the BPS rhetoric and the voice issues meaning that people who pretend they are nice people to others realise they can get away with once they think you won't be believed if they are out of order to you for no reason begin to do. Like that 'nice old man' who walks past and shouts a trope at you and gets in your face, because they know they can lie to someone else's face and say 'ohhh but I meant it nicely, bless em with their being emotional it must be the wrong end of the stick' basically being given permission to now be abusive to us by that effect that others can choose to now doubt the sick person's testimony.
Those who are less severe tend to not just not get this because they aren't there yet but also don't believe it because they fall into the trap of thinking as they also have ME then it must be something particular to the other person (and not due to the level and the fact that person can't avoid it coming at them because they don't have good days where they can defend and advocate etc, unless - and they can advocate if in an environment surrounded by those who seek to understand what they are communicating ie make it easier rather than hard to get their words out).
Putting people in positions that are only calibrated to their disability in drone work, and not in 'say' and 'power' is increasingly important to stop this paternalism from happenning. But it does seem to make for a difficult dilemma in those who are on the other side of the coin and think it is somehow discriminatory to re-organise certains jobs and rols to remove the 'work' part (as they see it) whilst keep the 'input' part. Someone who hasn't experienced it though cannot replace someone who has I now realise, and unless that is underlined then even those who have experienced it get dorwned out and not listened to by things like 'well if you can't contribute the legwork' etc being a barrier to voice participation.
I know that is all lengthy but it makes me think that for energy-limiting conditions then a new adjustment, like when you see on TV programmes in the US where a deaf person might have a senior role and an interpreter with them, is possible and just for some reason not thought of. For example if you had pros who could be great at the admin (and great at being a genuine advocate ie listening to understand) paired with the person who can input the thinking and knowledge and experience - which perhaps allies could begin to try and work out how to oversight and develop - then we'd have genuine energy-limiting condition specific ways of being represented?