what ever happened to the This Is my child campaign?

It would be utterly ridiculous and offensive to suggest that I have more right to speak for zzzzz's and Dixie's kids because we share a diagnosis. We should all listen and learn from each other.

I think people becoming positively orgasmic over a tweet or fb post about someone else's baby is very strange

Should have said my relative also has an exceptionally rare disease but not the same one

'A few of the things I find difficult is repeated assertions by people that if their own child were in this position they would choose to withdraw life support and seeming to denigrate the parents' decision not to do so'
Yes I agree and I loathe all the judging of the parents. That isn't disablist though people naively think they know exactly what they'd do in that situation.

Zzz I did see the other thread , trolls do target people and I've no idea why mn can't do what nm do and stop re regging. I've also had people be very unpleasant to me, there are lots of them about on mn unfortunately.

I don't think that analogy holds, rina. As I said earlier severely disabled children and adults who don't have cognition can't be directly consulted by anyone or indeed have the cognition to understand their choices and I don't see how you can speak for them because you have a different disability.

The people who love children with severe brain damage most and know them best and who care for their every need round the clock with very limited support from the state are best placed to decide for them unless there are very strong reasons not to allow this.

The state should only intervene when there is strong evidence the parental choice is not right for the child and this is what the court, not all of us, will decide in Charlie's case.

Anne Presumably your relative hadn't been on life support for 8 months.

every black gay person...... obviously i just meant gay there. I deleted half of one sentence

DixieNormas I can't speak for EVERY disabled person, but I can actually speak for us because I am one!

A gay person can't speak for every black gay person, but they can speak for gay people, and their straight parents can't!

Disabled children have rights, their parents don't

That's a stray x there not a weird kiss symbol

A few of the things I find difficult is repeated assertions by people that if their own child were in this position they would choose to withdraw life support and seeming to denigrate the parents' decision not to do so.

Derision about some of the parents' comments e.g saying they shouldn't be saying they are nursing their child night and day

Saying the parents aren't grateful enough for the NHS care they have received.

Commenting that certrain physical/mental things definitely mean no quality of life

And I feel there is a lot of criticism of those not with the thread majority on the above

From the media reports lots of drivers but of course not all )as I imagine many take the opposite view to CA) did "beep for Charlie"x The thread is a bit of an echo chamber and public opinion is more diverse

I think the threads are grim. 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. Giving examples of people's decisions they approve of - descriptions of the deaths of children that the parents did the right thing; it's all quite ghoulish really.

Sorry when I say birth I mean bath.

Zzzz I agree wholeheartedly. I have learned so much from caring for my relative - it has redefined my idea of what it is to be human and what life is about. My relative seems to recognise no one and essential parts of his brain are so crushed that he can't see. But when you pour water on him in the birth he is obviously experiencing such happiness and he enjoys his life on his own terms. His condition may be life limiting but his prognosis is very uncertain.

'what OP was trying to say was what had happened to the campaign and using the plethora of CG threads as an example of how the tone about disability on MN and in RL hasn't changed. There has been a concerted trolling of SN posters over the last few weeks '

Yes but what others have said is they are 2 completely separate issues. Also, again the CG threads aren't an example of how the tone about disability on mn has changed, they are discussing the ethics surrounding withdrawing respiratory support of a terminally ill dc.

' but I await my ritual trashing for voicing it' It is disagreement, not 'trashing'. Can we have some examples of the 'disablist' comments on any CG threads rather than blanket generalisations?

I have followed the recent CG threads and I genuinely don't see them as ableist. I think the reason they have ran to so many threads isn't about voyeurism but because this case raises so many issues that have struck a chord with lots of people.
I posted on one of the threads that there is a huge difference between someone who is disabled, whether mildly, moderately or severely and someone who is terminally ill.
Yes, Charlie has profound disabilities but those disabilities have been caused by his terminal illness.
When I was a nursing student, I cared for people who were blind and deaf or paralysed but I can honestly say that all those people, despite their frustrations, were glad to be alive and they gave joy to others.
The difference between them and Charlie is that they did not have a tube in their throats forcing air into their lungs thousands of times a day. They were not having their saliva constantly suctioned because they were unable to swallow. They were not having constant seizures. Their organs were not going into failure and they were not getting more bloated by the day by oedema. Charlie's body is desperately fighting to die and is being prevented from doing so by machines. If nature had taken its course, he would have died months ago.
I honestly don't see how raising concerns about this is ableist, I really don't.
It also raises issues about SM. After the initial court ruling, Charlie's parents seemed to accept the decision and asked for a few more days to gather their family to say goodbye. In that time, Trump and The Pope weighed in and CA ramped up their campaign and his parents have gone from accepting the inevitable to arguing that, if Charlie has this treatment, he can make a complete recovery.
There are posters who have spoken movingly about making the decision to end life support for their children who, according to CA, are murderers who didn't love their children enough.
There are GOSH staff being called baby killers and spat at on their way into work.
This story has made lots of people think about their own mortality and what they want to happen if they become terminally ill and many people have spoken about having honest conversations with loved ones and making a living will.
I don't deny for a second that disabled people and parents of disabled children face discrimination and huge challenges but I think the anger at the CG threads is misplaced.

That's mainly what I object to, the disparaging remarks about his parents and supporters, the sneery tone about the CA FB page. I feel both have been toned down in recent days, so even if posters making these points have been shut down, hopefully they have been noted by some.

I also feel that the overall tone (it's impossible not to generalise to some extent with this many threads/posts) is sometimes just too eager, especially when fresh news is expected or delivered. At the heart of this case is a baby and a set of parents who this time last year were happily expecting their baby, who had no idea that he would become so seriously ill, had no idea that they would find themselves in disagreement with their child's doctors or that they would be the focus of a media/social media storm. This may be a more sensible debate than most but I still find some aspects of it distasteful and will continue to report individual posts which I feel break Talk Guidelines.