Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

I agree with samcro and whoknows a bit tbh. I have contributed a little to the earlier threads but now there are 10 threads all basically rehashing the same things over and over again and as we have just seen, someone being called a troll for daring to wonder what there is to say that takes up 10 threads. Chasing any dissenting voices off the thread is what CA do. The constant plucking of comments from CA to sneer at here also doesnt sit right with me. Anyone who posts to object to that is called a "head girl " and told that they should push off and stop trying to control what people post.

And not every post has been calm and measured. I've reported quite a few for some awful comments about connie and chris.

Charlies army members aren't falling, by the way. A week or two ago it was around 50-55k. now its 62k.

the sneering at posts by CA members

On that point I strenuously disagree with you.

There is an absolute need for the social sanction of derision and disapproval to curtail the mushroom-like growth of SM groups that spring up around contentious events/news stories.

I've watched said social sanctions slow and then rewind the growth and heat in other similar SM Outrage groups in other circumstances. Combatting them with fact over fiction and strongly worded disapproval that pulled a good number of otherwise reasonable people back from the brink of being swept away by the group-feel.

Peer pressure is often (and rightly) criticised when it is part of the process to get people to do stupid/dangerous stuff. However it is supported by evidence as a tool to raise personal standards, as well as lower them.

The widespread disapproval and derision of CA's tone and content will do nothing to curtail the hardcore members. But they are relatively few. The bulk of members are reachable and many will find themselves more inclined to employ their inner brake in the face of the social sanction of being disapproved of by association.

The disapproval must of course avoid falling into the same trap as the SMOGs, otherwise they become exactly what they disapprove of. But we throw away peer pressure/social sanction of disapproval of SMOGs (social media outraged groups) at our peril. Because at the current time we have no other effective tools to limit their excesses, nor the extent to which their emotion/social offerings have a virus-like ability to spread and increase their numbers.

Longer term I think we need to address the emotional and social elements that provide the attraction and fuel for the hardcore memebers of the groups. The bulk of people in them cannot be dismissed as evil, stupid etc. They likely have a range of unmet needs and as societies we all benefit if fewer people feel that SMOGs are the only option they have in terms of meeting their needs.

If the family can discuss, distort and tweet the details but nobody else can, then we'll already be halfway to the parental ownership of children that they're arguing for

Exactly this, several people have posted to say that these threads have been found through searching online for a more measured discussion.

The mainstream media are not reporting with any accuracy, the CA page bully anyone who puts a different point of view across and these threads have had medics, nurses, parents of dc in PICU and ethicists posting.

I have decided that in future I am going to ignore the head girl comments and the ones who want to divert to a bin fight.

Sadly, barrelling in with wildly inflated and untrue criticism to threads one doesn't approve of is a well known tactic for derailment to force MNHQ to delete as a 'bunfight'. It would be unfortunate if that occurred, not that I am saying it has already.

I have read every one of these threads and have found them to be incredibly helpful and informative vs the information to be found in the MSM. Thank you.

Like everyone else, I have huge amounts of sympathy for Charlie's family and of course, for Charlie himself. I have a 6mo boy (and a 5 and 4yo) and I find myself looking at him and thinking 'what would I do if it was you?'

While I do not support some of the routes the parents have taken, they are inexperienced parents, it is their first child and they (I believe) are doing what they feel is right although I agree that they seem to have lost their way and are not being supported by people with their or Charlie's best interests at heart. I am sad for them as I remember my hopes and expectations when I had my first baby and perhaps they have yet to come to terms with the fact he will never smile at them, call them mummy/daddy, roll over, walk or go to school and all the little milestones we take for granted with healthy children.

The tragic irony of this case (I haven't seen anyone else mention this) is that the people they are aligning themselves with, the US pastor & lawyer, pro life groups, the ex UKIP spokesman, even a lot of their supporters are all very right-wing. (and probably gives us some idea of their own political leanings)

Were this case to end up being a catalyst for change in favour of a more right wing approach, which is suspected to be the agenda of some of the supporters, and in fact, appears to have subtly influenced the narrative on CA, (mostly ordinary people that rely on an NHS in its current format I might add) i.e. State control is bad, private is good, the ability to pay should mean the ability to choose etc the outcome for Charlie would be far worse than the outcome under a socialist NHS.

I know it's a tenuous link but Inadvertently by choosing the support they have, the parents are helping a cause that would mean IF Charlie got the treatment and improved by say; 10% and could breath unaided, (which would be touted as proof the experts are wrong and that the state should not Have ultimate power over parents/bill
payers choices) and we see the threatened NHS decline where we end up with privatised healthcare, C&C would be unable to fund the long term care that Charlie would need and no insurance company would touch them. Not to mention all the other children born later that they would pull up the ladder for treatment on.

Sorry for long lost, I'm not sure I'm
Making as much sense in writing as it made in my head! Just wanted to put it out there.

Neonrainbow samcro has done this on several threads, if not every one. It's pointless and goady and I say that as her 'friend' (under a different name) from years ago on the SN boards.

Saucery, exactly, it's a well known tactic for getting a thread pulled.

I will sneer at the CA posts all the while they advocate violence. I won't sneer at them for having a different viewpoint...however uneducated or badly spelled that might be.

...and again. I wish ...so wish ...I could wave a magic wand for those parents to make everything go away for them...for Charlie to have that lovely healthy existence that he should have done were it not for this genetic disease.

Best totally ignored, rabbitnothare. That way there is no accusation of 'bunfight' to be had.
Everyone is entitled to their opinion and to express it on a thread. Sometimes you just can't agree and that is fine. Best to Hide and Report if you think it breaches community standards.

But i think she's got a point. even if shes trying to be goady, i most certainly am not, and im not trying to start a bunfight to get the thread deleted. I agree with the general stance on here - charlie should be let go peacefully, connie and chris have my abject sympathy, and they need a lot of good support. What i dont think is necessary is pages of posts nitpicking at charlies army posts, even if they are ridiculous. Perhaps they aren't as highly educated as people here and don't have the opportunity to exercise critical thinking. Sneering at charlies army is hardly going to get any of them to think harder about the facts of the case is it? If they stumble across this thread they're going to see that a group that they're part of is being ridiculed and laughed at and that's hardly going to engage anyone is it?

Thanks for the new thread

I dunno, Neonrainbow, I think that is doing a disservice to people who aren't highly educated or equipped with critical thinking skills who don't blindly follow an online mob and refuse to accept the facts of the case when presented to them in an accessible way. Not having a certain standard of education doesn't mean you can't read and take on board simple facts.

There is one section of CA that I really can't get my head around.

I mean the parents & family are scared and desperate (and have backed themselves in to a corner)

I get that if you've never cared for a ventilated person, even a baby, you won't understand how much work is involved. That if you've never been involved in medial research/ethics you might not understand what exactly is wrong with Charlie and why they can't just give him the medication.

That some people have deeply held religious beliefs and some have more self serving motives.

It's the ones that have children under the care of GOSH that I can't understand. I can get my head around them joining in the beginning, the thought that 'that could be us' must have run through many of their minds. But why they've stayed members with all the vitriol aimed towards GOSH??

Either they do believe that GOSH are trying to kill a child, so why haven't they removed their child from their care?

Or they don't believe that and they're shit stirring, and if they love their child so much why are they making life more difficult for the people trying to help their child??

Because it will be, all the staff will be feeling extra pressure. There will be extra work protecting other patients from all of this.

And if GOSH do lose money/donations because of this it could impact on their child's care in some way.

Is it the element of not been able to see the consequences of their actions??

Are they so blinded by being part of a 'community'?

I just don't get it

someone being called a troll for daring to wonder what there is to say that takes up 10 threads. Chasing any dissenting voices off the thread is what CA do.

ONE person, who by her own admission was upset, said "troll". Half a dozen of us took issue with the word despite disagreeing with the thrust of @Samcro's criticism. It's hardly comparable to a CA groupthink pile in, is it?

I don't think that (for the most part) it has been "sneering" @Neonrainbow. It's disbelief.

a personal friend? he only popped up last week

its as ba as that pro lifer saying love you to c an c!

The CA facebook page is of academic interest to me because as an academic, one of my two core research areas is vey broadly speaking centred on social media + parenting + healthcare and health communication. The discourse and the nature of the rhetoric on the CA page ties into the conversation of the growing rise of populism in Western democracies and the role of social media in shaping and supporting populist stances. The participation of populist figures (Trump, Farage, Pence), the selective use of populist media sources (Fox News Daily Mail), and the hailing of populist media personalities (Katie Hopkins Piers Morgan) - are some of the many ways in which CA is a fascinating case study of what happens when populism meets social media meets online patient-support.

So from that perspective of the CA page amongst other pages getting my focused academic attention - I think these threads are very useful in countering said populist discourse. Here - right here - is another social media space where that kind of rhetoric is being countered, critiqued and more social-democratic viewpoints proposed. That's important for public debate and dialogue. That's why it's not just a matter of whether 1 thread could have said it all about all the information at hand - it's not about information - the dialogue itself on these threads - the process of discussion itself has a critical social function at a time when populist rhetoric has taken over a lot of public attention in Western democracies. That's why these threads are really useful and important.

Serf turf if I have upset so many even though I apologised maybe its best I don't contribute anymore to this thread.

@SerfTerf

I think we will have to agree to disagree then. The vast majority of the posts ive seen quoting CA is in a "can you believe how stupid these people are" kind of a way. Sometimes accompanied by a comment to that effect. Its just unnecessary. The ethical debate is a very interesting one so it's a shame some posters are sinking to that level. I'm clearly in a minority here, i know that. But i dont think posting stuff like that does the debate any good.

@Sostenueto you're fine. I understood where you were coming from and what you were defending. It was only the T word that was contentious. Your posts have been really interesting and valuable. Don't go anywhere.

Interesting that some posters feel there's a gap between what's said here and what's said in the mainstream media. Listening to various current affairs programmes on Friday, I heard quite a lot of mention of the online abuse doctors were getting and how GOSH are only acting in the best interests of the child.It would be a brave public figure who criticised the parents though. I'm really become disgusted with their behaviour after the fiasco in court this week and Connie's claim of expertise.

Thanks serf turf but best if I really think for a bit before I post instead of being so reactionary.

Sostenueto unfortunately we are held to far higher standards on here than the rest of the entire internet.

Ignore the goading and carry on posting. I thought that the academic's post was interesting and is exactly what I meant albeit written to a far higher standard than anything that I could ever do.

It is counteracting the echo chamber of one view.

I agree with Neonrainbow. There has been some excellent, reasoned debate on these threads on a very emotive issue. Some really informative posts and i hope that continues.

I don't think there is the need for the constant reposting of comments from the CA thread; it feels uncomfortable to me that some seem to be stalking the threads, and the mocking of their comments. I don't agree with anything they say, but comments such as (and I can't remember the exact words) 'CA probably wouldn't be able to afford private healthcare anyway' are unnecessary. Because we disagree with their comments and consider them stupid they must be poor? That is not reasoned debate. I'm not really bothered about CA's views - I've not met a single person in real life who agrees with them.

For me it is only about Charlie and his best interests. Just my view and I know others will disagree.

I guess I will now be called a troll or told to jog off.