what ever happened to the This Is my child campaign?

'And then there are the other dozen or more strands being discussed that also aren't simply an obsession over someone's baby dying.'

I agree. People have discussed the legalities, the ethics, who should decide when to stop treatment parents or medics, sharing their own experiences with ill or terminally ill relatives. It is rather simplistic and very unpleasant to say anyone is 'obsessing over someone's baby dying'.

I'm entitled to my opinion and at least I'm not speculating over the date of a death !!!

Much of the interest isn't an obsession over someone's baby dying. It's more generalised than that, it's alarm that there is a growing number of people seemingly believing that facts and expert opinion can be overturned if there's a sufficiently loud social media campaign to shout them down. However, it's being discussed in relation to Charlie Gard because it's just the latest and most visible manifestation of this problem.

Similar concerns were voiced during the EU Referendum and then the presidential race. It's something that is coming up as a problem more and more frequently and has to potential to cause real trouble.

And then there are the other dozen or more strands being discussed that also aren't simply an obsession over someone's baby dying.

I honestly cannot understand the obsession over someone's baby dying

Also fwiw I was attacked by pointing out I could understand the confusion of the parents as they were told conflicting things from different hcps, I said I had looked after many long term vented patients and respiratory support with patients with brain injuries does occur and imo gosh should have looked at not escalating treatment for further organ support, rather than a court case to withdraw respiratory support..

A lovely poster told others to ignore me I was after a fight, purely for putting forward my view in a very non aggressive way.

Its the nature of mn though, lots of unpleasant people about who just love attacking people. It doesn't seem to matter which side anyone is on, on any subject.

I once read a poster saying on an early CG thread that it was disgrace talking about this ongoing tragic case and how could people be like that. I looked at their posting history and they were commenting on the politics of Grenfell and failings of the tories when there were still people trapped in there.
Another poster pointed out their double standards and they of course said it was different. How though?
Tragic events will be discussed at length on chat forums, offensive posts are deleted on mn which is far better than many sites.

Agree with Noeuf and I find posters saying we won't get to know about the court case until tomorrow afternoon extremely distasteful. I really hope the hearing will be in private so the decision will just be known to those poor parents and journos won't be tweeting on twitter about the presumed death of a child

'To me, a developing story is just that - one where there are new developments like a number of court hearings and appeals, press briefings'
I agree. It's ongoing. It's not like it happened 2 years ago and people are still talking about it.

Also, with regard to the 13 threads, I commented on one possibly the 6th or 7th. I'm not still on them saying the same thing over and over. So the amount of threads is due to the huge amount of posters on mn, not the same ones saying the same things.

No, Dixie, it absolutely didn't.

And how on earth is it not news? That's going to come as something of a surprise to, for example, those in charge of the main news channels who reported the GOSH statement about harassment and bullying as their lead item on, um, the news programmes last night.

Ceto loads of that isn't news and certainly not the last few any great detail beyond a Tweet or couple of lines. Recently there's been mainly speculation and I fail to see how so many threads have been necessary. The threads are endless rehashing of posters' views with an add on recently of how much sympathy they have for the parents, to tick that box.

But up to you. I stand by my view the threads every time I look remain posters validating their opinions, congratulating themselves on their cleverness and waiting for anything new to dissect.

Also agree with Dixie a lot of the detail was ages ago.

How bizarre to interpret what I have said about a developing story meaning a new FB post. I must say, that throws a whole new light on your criticisms, Noeuf.

As I've pointed out, I don't go on the CA FB page, so no, I'm not talking about developments in that light. To me, a developing story is just that - one where there are new developments like a number of court hearings and appeals, press briefings or announcements from those involved and the like. In relation to the CG case we've had, recently: the European Court decision; the parents saying they'd been told that they couldn't take Charlie home to die; the parents saying they'd been told one particular date was the date the ventilation would be withdrawn; the announcement that that wasn't going to happen that quickly; the experts writing to GOSH about what were stated to be further developments in relation to the treatment; the short notice referral back to court; the initial court hearing; the US doctor's visit and parental announcement shortly after; the issue about whether further scans would be allowed and the weekend hearing on that; the meeting between doctors; the directions hearing, and what appears to have been a further afternoon hearing when the MRI scan results came out; the GOSH announcement about harassment and threats; and now the forthcoming hearing tomorrow.

But yes, you want to characterise all that as "a new FB post" in order to support your views, go for it.

Ok so to you fast paced and developing is a new FB post. We just have differences of opinion there.

No point commenting, it's an echo chamber and as for no longer commenting on CA - I just looked after seeing your post and that's not really the case.

Whatever though, it's just one distasteful area of the forum.

Ceto it's not a fast paced developing story

How on earth can you say that? OK, there have been times when it's not been that fast, but then threads have slowed down at such times anyway. But there have been numerous developments, particularly over the last couple of weeks.

it's public and going to be commented on.

So go on there and comment. But don't break MN rules by having a TAAT. They have in any event largely stopped commenting on the CA FB pages

Your post makes a lot of sense and raises interesting points, however for personally the OP wasnt about that - to me it's not an argument of whether he is disabled or ill or what these terms mean, more the comment that the posters on the other thread were disablist for - I'm not even sure why? Questioning the quality of Charlies life? Debating the ethics of treating him because of the state of his condition? that's what I gleaned from the post, but of course the points you raised are IMO much more sensible and pertinent than the OP.

WellThis, thatbis very considered and well put.
For me, what sways my opinion towards 'illness' is that his physical condition is not static, it is declining towards an inevitable and appalling conclusion. So not about quality of life, but about the actual life and lack of any treatment to stabilise him in any way, at any point.
The spin put on the case by the supporters is that here is a baby with a disability that the NHS do not want to keep alive. I do not believe that to be true.

Saucery has a good point about the gap in understanding happening:

"some posters feel that Charlie's case is a disability one, whereas others see it as being primarily a terminal illness with no hope of recovery"

I guess I'm confused about what people think disability is and why it's seem as a discrete entity with no overlap with illness, and, even terminal illness?

I confess I'm interested in this for my own reasons, probably more than from the perspective of joining in the debate around the poor little boy and his poor parents.

For my there is a huge overlap between disability and illness, although you can be disabled with being ill and vice versa. There's a huge mushy middle ground which is where so many people live (& die) everyday. It's mostly a cause and effect thing... being ill is disabling. Living with illness and ill health creates the barriers that then society chooses / declines to address.

Do peoples definitions of being disabled exclude being ill?

Do we need another word for people who are:

• disabled and well (easiest one to think of here is sensory disability? Or cognitive disability?)
• disabled due to illness (e.g. Living with chronic illness?) and here's where it starts to get messy, what type of illnesses are included? Having 'a condition', managing a condition? What about a deteriorating condition? Or one that could get better? What are we talking about then? Disability? Or illness? Both? Neither?

And where does the idea of dying come into it? Do people understand that the term disability can or cannot be applied to...

• being ill for a long time
• a life limiting illness?
• a terminal illness in which death is imminent? In months? Weeks? Days? Or an unpredictable 'could come at any time'?

Does being terminally ill mean you no longer can be disabled?

Sorry for the barrage of questions. It feels like understanding this may help me communicate with others so they understand my situation better as I think I'm missing something in the way people tend to think... and it might help understanding on here too?

Ceto it's not a fast paced developing story. It's a group of people searching online for a reason to reinforce why they are right. Some of the posts are horrible, deriding the mother for the expert comment etc. If you lot want to entertain yourselves like that fine but it's public and going to be commented on. In the same way the FB pages is being picked apart.

I've read through some of them, posted on a few but not that recently and tbh I can't see what there is to say anymore.

But it's no different from any other developing news story, is it? When events are developing with different court hearings and various activities and announcements from the family and their supporters, people are going to comment - and obviously there are new things to say about it, because people are talking about different things. That's what baffles me about people complaining about the number of threads: it would be excessive if people were discussing something that happened several months ago and come to an end, but it's a case which has been through several court hearings and appeals and regularly reappears in the News. It's like complaining that people are still banging on about the election 5 weeks after it's been called.

Rina Apples and Oranges. Whilst the parent of a child, any child is working in the best interests of the child, then the parent has the right to make decisions, so long as they remain in the best interest of the child.
Some of us are parents, some of are parents with disabilities, some of us are parents of children with disabilities.

'I think people becoming positively orgasmic over a tweet or fb post about someone else's baby is very strange'
Yes well I think saying that ^ about such a sensitive case is pretty shit too.