what ever happened to the This Is my child campaign?

[Samcro]

i thought it was done to educate people on children with disabilities...
yet here we are with thread 13 about CG full of rubberneckers making disablist comments about brain damage Or should I say ignorant comments.
why is mn hq not saying hang on a minute this isn't in the spirit of the site and reminding posters of the TIMC Campaign .

Yes but all the furore is upsetting

Yes but people who believe their child shouldn't die do many desperate things including remortgaging their house for last ditch treatment etc. I am sure they were desperate.

Yes but as I said the debate isn't about what his current state is, its about whether it is ethical to treat him once you way up his current state vs the realistic chance of any improvement, is all I'm getting at.

Haha, sorry cross posted, there is a lot of "Yes but" going on here.

I don't think anyone is judging the parents here. Their despair must be all consuming and despite objectively finding their behaviour sad, I can't spend one second judging them for it because what they are going through is the epitome of a living hell to me.

What I strongly object to, as do many others, is some of the public attitude surrounding the case, particularly the CA movement which through social media are bullying and abusing GOSH and any other people involved in the Charlies case who do not agree that it would be ethically sound to move him to the US for experimental treatment.

No worries. I'm going to bed in a minute but my understanding of the factual position is:

• GOSH believe he has irreversible and serious brain damage
• US dr was more equivocal
• US dr believes his treatment can deliver 10% chance meaningful improvement
• GOSH think not.

The US dr will give evidence. The judge will decide and then we'll know.

cross posted again

Yes they are obviously desperate and my thoughts are with them and their little one and family. I just hate to see them looking so awfully upset and cannot imagine how Id feel in their position.
It's up to the courts too decide though and not social and mainstream media.

The link earlier from Polter is really good.

Really thoughtful and worth reading.

The 'this is my child' thing seems to have become 'this is someones child' and then 'this is their child'. TBH I suspect it's less to do with personal convictions of those involved, and more 'this isn't an easy PR-able campaign' and slooowly it slides into obscurity.

Not dead, just forgotten, and unloved. More, consigned to the back of a cupboard than put in the attic, I hope?

Maybe it can be brought out of the cupboard and dusted off?

Sorry, I am going to do that annoying thing of saying, 'I'm out' ....and then coming back in.

I just wanted to point out 2 things

1. This is now another thread about the CG case
2. If the TIMC campaign is dusted off, there will just be another rehashing of all the arguments and niggling that there was at the time over the actual campaign itself, it disappeared up its own arse before it even became a thing (for me anyway), and sadly lots of people on the sn boards left afterwards. I have no issue with MNHQ, I think they were trying and do try to be as supportive as possible.

I thought the dr from us had said the previous scan (not the recent one) showed no clear evidence of irreversible brain damage. We don't yet know what he thinks about this scan?

It isn't what he said, if you look at the judgments. An early MRI scan didn't show such evidence, because it is the nature of the cellular damage caused by this illness that it won't; however, he accepted that the EEGs showed severe encephalopathy.

Because the majority are 'right' don't you know, making assumptions about things which have yet to be decided and making sweeping generalisations about the worth of a brain damaged life

But, if you had read the threads, Bishop, you would know that this isn't the case. You blame someone upthread for making generalisations about the people posting there, but you keep doing it yourself.

Like any thread in MN, it features people who come at it from all different viewpoints. I, for example, have never been on the FB threads, and am principally interested in the legal and ethical issues; including the difficulties that have been thrown up by the involvement of social media. But you've decided that, apparently, the post is fully of people who fit this characterisation when the evidence simply doesn't bear it out.

I' ve read the link to TIMC. I have to say I'm completely baffled as to what is has to do with discussing the Charlie Gard case

The mother of my relative with PMLD commented on how rarely you see images of children with PMLD in the public sphere - e.g. they would rarely be used for marketing etc. She felt it's because people don't want to see children like her lovely son. it would be nice to see an everyday family dealing with the reality of a severely disabled child depicted in the occasional advert etc.

Your viewpoint is perfectly valid and reasonable, zzzzz and thank you for voicing it.
I think where the clash has occurred is that 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.
It's not about quality of life. I fully understand that a debate about that can often not take into account entrenched disablism in society. I consider MNHQ's actions (deletion etc) where this has happened to be appropriate.

We aren't going to get anywhere with shifting perceptions about disability with TAATs and personal,attacks, sweeping generalisations about 'all posters' etc.

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.

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.

'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?

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.

Sorry when I say birth I mean bath.

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.