I understand all of that but telling your story in person to a politician hits differently to a social media campaign.
As I say I have no issue with the campaign per se, I’m just fed up of being asked to talk/video/photograph myself and talk about myself.
There is certainly a place for telling people’s stories in campaigning, but I feel it’s becoming hackneyed. MP’s tell stories of named constituents in parliamentary debates, charity adverts always focus on a named person experiencing an issue (“Sarah has to walk three miles to a well for water…” or “Robert is only four but has never been able to see…”)
Social Media is full of people telling others their story.
It might be different outside of the UK but for me, it’s been done, and done, and done.
I’m the one who has done and done and done it and nothing has changed, I’m no better off. What does it say, when we all repeatedly tell our stories and nobody cares?
Agreed. And it’s not even like there is being something added by those asking going through a process of ‘getting to know’ so picking up on issues they mightnt have known those more severe or those working are getting thrown at them repeatedly or are the least well known or understood or misunderstood aspects to then build on what is a request for making the private and personal public with some promise it will be to some avail that it never is.
I think it is a good point to make that this is a significant sacrifice being requested particularly of the most ill and then there ends up being an attitude as if the less ill help the most ill rather than the other way around when it’s their privacy (and therefore safety) being used but then what is pushed for off the back off that gets taken out if their hand. It’s not an individual offering to stand behind a severe personal going to a meeting with an elected official and spend hours helping them to tell their story just to that person and ensure that person doesn’t ignore it and the effort was worth it for that ill person as what they individually needed for their situation was sorted. Not in this situation.
The most ill often don’t get heard even in the community of what needs to be done , change their priorities sorted and them listened to on the carefully nuance. In the uk the discussions ‘for us’ led to everyone 5yrs in just saying the severe bit could wait again to be discussed probably because no one round that table was severe. Because who gets the voice and seat clearly makes the difference whatever the intentions of ‘of course we will do it for you’ . Well once they’ve given a story how do we know the bits we emphasised were important weren’t ignored and what things we said internally weren’t cherry-picked and deaf-eared. What just hand it over and lose control of our own narrative and how someone else uses us?
Because there is nothing else being the excuse if we ask questions - despite the energy involved for us doing that was inordinate and more than the less ill person asking for it is being asked to sacrifice?
It’s asking ill people to offer their stories, and to do the effort of those themselves and the ownership of that ‘capital’ then be
Ing for something which isn’t based on their individual needs. It would be one thing if them were asking to meet ill people as mediators to check what it is that they need their charities to be doing for them and to make sure they’ve got the nuance right if what would be right for certain groups but not for eg iller or milder as we are a diverse group - hence the nuance. And why things are supposed to be informed and then curated
So I think it’s absolutely right that people ask questions. Those who are illest are not obliged to keep doing this (it’s a huge ask making them more ill and vulnerable they do only on a ‘there’s nothing else so trust/cross fingers it won’t be wasted by those asking for it this time’ and then hope those people ‘do the work’ and ‘use it right’ which is making them do a blank check on the argument’noone else is making promises/asking’ rather than actually having a more specific answer before and giving them a real option)
And we have an obligation that if we use those most ill as a story when we aren’t as ill that we ask ourselves why and check we are using that for them and not just as a warning tale for those not as ill yet wanting to focus on their situation. Whilst leaving those worst off with nothing different other than the energy gone and the privacy gone and no control over how they themselves are discussed because that contract wasn’t made clear before they were asked to hand that over on what basis.
Everyone knows they can tell their story , privately, to a representative- if they are well enough to do so. And that when they do they can at the same time be asking for a certain action/ doing it for a reason.
There might be some power if there is that same ‘good idea’ in the ask that makes it more possible it will be a yes it will happen but also that whatever it is has been well thought through in order that it is actually helpful and not another eg treatment that harms etc. (Which has been the ongoing issue).
So I think this absolutely does need to be discussed. Discussed at a more genuine and honest level than what has come back where the specifics I’ve just from a few minutes mentioned have had the work done and are discussed not very ill people just again being told publicly to do the work again with the actual work making it doable and worthwhile missing.
We do have a funny situation in the community where those most ill find what they do and are asked for or contribute is dismissed as ‘not work’ and ‘not experience’ and ‘not skills’ and not things only they can offer and isn’t respected and those less ill just ask for it then call whatever they decide to do with it ‘work’ as if it’s more than the former. Well it isn’t if it isn’t getting the nuance of it and isn’t getting the needs of those being asked to put stories across right and taking the time to hear the complexities of what would make something actually helpful vs not . Or worse if what is asked for on the basis of using their stories isn’t what they wanted. Or who they are. Which is misrepresenting then.
And why you don’t just do knee jerk send in your sob stories without actually having a stage where people are properly heard privately and campaigns being composed on how best to achieve a move forward. That’s just saying ‘look at these poor people’ to justify what? A charity existing that does what for them ? Those questions need answering first don’t they?
And then why can’t the campaign be about what x charity is doing, asking for or sorting y and how they’ve done the work to make sure it’s the right thing and nuanced to really help not just be ‘doing something’ and then those who it would transform the lives of being able to talked on how it does that. And who they are and why it matters to them.
If it is a Medicaid issue to do with invisible illnesses then is this specific to that , and why does it need to be public at first rather than indeed more survey based to really hone down more precisely who needs what and where things go wrong in access etc.
Then if campaigns that are either to public or to government are made then the issue peoplecmightnt understand exists can be better explained by careful messaging so those on the receiving end understand what the issue is . This is putting the load on a few individuals to try and get those across instead when the bigger organisation isn’t and yet it’s just ‘their story’ not them trying to within those doing the job the bigger organisation isn’t isn’t doing .
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