Or misleading.
I am afraid I remain one who is very sceptical of the whole FND construction, however packaged. It is just the same old psychosomatics in slightly different hat, with none of the serious underlying problems actually addressed in any meaningful way.
Genuinely very sorry for desperate vulnerable patients who I regard as having been preyed upon by the FND 'experts' and naively led into this cesspit, then used to deflect it all from proper scrutiny and expand the unearned empires. They are not the first patients to be used in this way, and they won't be the last, and it is not their fault at all.
But continuing to defend it is also not an answer to their problems. It will only end in terrible loss and grief for them. The longer they put off asking the hard questions about the whole FND concept and practice, and accepting the real answers (or lack of them), the harder it will be for them when they find out the truth about it, about how much of their lives they allowed to be wasted by it.
More selfishly, their defence and promotion of this stuff also has consequences for others that the FND gang are trying real hard to gain unjustified authority over, like people with ME, and we most certainly have a right to robustly defend ourselves against it. If that means offending some FND patients, so be it.
I don't enjoy saying this stuff one little bit. I would rather be completely wrong about the FND project. But I fear the evidence says otherwise.
I couldn't agree more. In fact it has taken me this long with ME/CFS to see all of these parts just in time for watching it all play out almost in identical form here. So I can see all the intentions and pragmatic compromises of 'we'll build from this' and so on. But them not realising that bone thrown is a trick potentially. And that if the power issues aren't fixed and the wrong area dallied with (who have no intention of compromising long-run even if patients think they'll learn and change it from there) it just drags back down other progress by the way the lump and dump is used to do a snakes and ladders on the same demographic who get bucketed.
There is a big discussion to be had with bystanders, and with those 'inside' the community, and in particular those who set up business or whatever with 'good intentions' (genuinely) 'just doing their best with what they have to offer' (but of course their business only being in the area they do/want to do so it would only ever be supply-led)
And that discussion covers topics that disability bigotry
is and includes people deciding 'that's good enough as a bone to throw for x they can half that as their life and they should shut up and be pragmatic and a
good patient'
It's a dangerous game of compromises and trade-offs for survival for those patients dumped into all of this, and you are correct in flagging that the issue is that crushing systemic issue ploughing on through and people are left so desperate that they are having to make chess-moves just to live another day that mean the system can't be tackled by them. So there is a real failure and choice from those on periphery happily not stepping in and ergo saying this is OK and the same old revolving power-issues playing the same things out again. And yes it won't end until we all, with different conditions, actually get together and tackle the proper thing: chronic illness, particularly for women, not being excluded from the health service and research and so on.
and most bystanders or supporters will not admit that to themselves or others and noone holds them accountable to the fact that by choosing to say nothing they are OK'ing an unnecessary reduction to someone getting a tiny % of a life where the disabled person is in a close to coercion-control situation of 'object to the theory and you lose the thing that means you survive' isn't far off the dystopian literature type stuff. And NO it isn't OK or sufficient, it is disgusting - and the next thing they do is start telling lies to themselves about the truth of that person to cover-up their own conscience, just to compound the horror.
Yes I agree when you are so disabled you can't fill in a form or do a phone call and all the bystanders whistle and at best give you a chat of helpful advice suggesting how you should do these tasks you've noted are impossible to survive (and probably before ill did ten times as much for them) then it is a step up if the support
seems a bit more specific to the needs. But it is fundamentally coming from a bad place which agreed has terrible implications for some who needlessly have been dragged into it or sacrified (eg those with ME could indeed have energy issues and get bucketed into something that doesn't help them and makes their lot even worse in theory for some) even if people are making those sort of unenviable collateral damage, better than the alternative type exchanges.
We indeed all need bystanders and allies to step back and so no to this abusive situation where patients are getting deliberately bucketed - in order to sew division and confusion (as part of it as well as to ensure that good research can't be done by specialists because it has been lumped)
within the community. And we need them to stop signing off a dystopia as 'OK' and acceptable for others on the flawed fallacy of 'because it is 10% better and some might actually survive even if it destroys them as a person compared to the threat we hold of just leaving you to slowly die'.
Because that's what this really is and we are potentially watching - all dressed up in self-deception of people who might genuinely have good intentions and all that nosense of 'make the best of a bad situation' - individuals who are being bullied and put in hell in order that a few of them will compromise and do their duty as the 'advocate' for the only pathway of survival out. Or them dancing with a devil only a bit and they have a strategy out to rectify it but don't realise said devils have all the energy and power and they are just being toyed with etc. It's painful to watch but only a little of this is about the health condition, it is just a repeat of a system issue that layers all of this 'stuff' on top.
And there is a big discussion about what underlies this -and yes I do think they won't can't see it but it is misogyny seaming under all of this, even if the surface is women making a nice little living of coaching or whatever with good intentions. The
system has chosen to refuse to allow for proper areas to be set up in these functional specialisms required for all these femal-heavy serious diseases and bystanders have accepted some awful watching a slow-car crash repeated premise where whatever the condition or the label it's just a free-for-all for the same old not a lot to offer parasites recycling their bigotry under the guise of pretending it is help, and it all being about 'all women with anything chronic need is to be taught to live better and stick a smile on their face as they lead a lesser life'. Whilst there is a pretence of a health system based on the assumption that because it exists for certain other conditions and other demographics this 'other universe' somehow isn't untrue. And sadly this 'other universe' isn't cheap either and is a whole business area that is much more badly organised and less regulated but supports a lot of jobs and patients are coming up against that too.
I know that will be critiqued as deliberately of extremes and it isn't just male-female but I do think that is the bigotry that needs to be tackled underneath it because that is what men and women bystanders accept for other women (and some men who get illnesses that by virtue of all this get accepted under that same banner), as well as plain disability bigotry - because I don't think things are great for other disabilities either. So would we call it 'paternalism' and 'lesser voice assumed for no good reason' type stuff? But yes we need to take this 'other health system' out of the hands it is in with the well-intentioned 'aspire' courses and people making money out of 'offering something to relax' justified on the 'something better than nothing'
