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 .

i didn't start this thread to debate about CG.
it is ask mn hq how it works with the TIMC campaign.

I followed the link from the disabilism thread that you posted, samcro

And I've held back from disagreeing so far as you are entitled to your opinion, plus being on your "side" on the disabilism threads, I felt a bit like a hypocrite to be honest, despite being very careful to be sensitive in my posts. And yes - as you said - there have been some posts that were horrible, and they have been deleted. But that's a few posts over 12,000 of them, so many as it is an ongoing court case. We're not discussing something that was a one off two weeks ago, theyve been back in court this morning.

Tinsel, people have been saying on the thread why they don't like it. They have been shut down.
This thread was started. The op is not being listened to but is being told where she's gone wrong.

Tinsel, people have been saying on the thread why they don't like it. They have been shut down

Shut down how? by being asked questions about their views which they don't answer?

How does it tie in, Samcro?

I'm afraid I don't understand the issue but will try to.

The threads are far from disablist and have many parents of disabled children giving fair and frank views.

Samcro's op reads as being about the CG threads in relation to TIMC? Am I reading that wrong?

zzzzz I don't know, you can post very 'assertively' yourself at times.

It's pretty rude to call people who have had similar experiences of a child with a terminal illness, 'ignorant' and 'rubberneckers'.

That will also include the medics,researchers and ethicists on the thread too.

So apologies if I was abrasive but I am getting pretty sick of the critism which consists of little more than shrieks of disablism without explaining why they think it is.

Given the huge social media campaign run by the family, the thousands of tweets, newspaper comments and columns, you want to stop all discussion of it on mumsnet?

Well, given that the CG thread was directly referenced, yes, people are going to insinuate that it was about that.

Though I guess the title is re TIMC, so I guess I see why you'd have that interpretation, zzzz.

Which is it samcro? Just so people don't unintentionally derail in the wrong direction?

Samcro, I replied to you with respect explaining why I didn't believe that posters on the other threads were against people with any form of disability. I linked to this thread so that people on it, with far more experience than I, could also comment.
Please welcome honest debate.

A lot of sentiment on the CG threads is that brain damage is the end of the world, that brain damaged people have no quality of life and that they'd not want their children to have brain damage.

There are posters here who live that life. Their children do have brain damage, they didn't get a choice about it and their children do have an amazing quality of life. That is going to hurt.

The posts are very definite that there is no hope. This is mainly based on media coverage. I don't have a definite feeling either way, I'm too mistrustful of the media to take against the parents' view. I believe though that GOSH are a centre if excellence and are genuinely doing what they believe to be best. But again as a parent I've had bad experiences with medical staff and had to get PALS back up so that also colours my view somewhat. I'm actually so far on the fence my arse has splinters.

Plus 13k posts feels gratuitous.

If I have got the wrong end of the stick re this thread, I'm also interested to know what is going on with TIMC at the moment

Yes. Bishop, that's a good explanation.

Disablism isn't just calling people retards or pushing ahead of wheelchair users or calling autistic kids 'cunts'. It's mostly more subtle and pervasive.

This is a good read and was posted, but largely ignored, in one of the earlier threads about Charlie:
www.rumersrainbow.co.uk/2017/07/myth-of-irrational-parent.html?m=1

I disagree. I've read each and every thread, all 13 of them, and whilst at times I have felt the need to point out that needing a ventilator does not mean no quality of life per se, and being both deaf and blind does not equal no quality of life, and nor does paralysis from the neck down, etc., as so many of our children with PMLD live very fulfilling lives regardless of those things, there does come a point where a combination of severe life-limiting conditions and illness equals no quality of life.

I don't think we can silence discussion about where that line is drawn, when the anonymity that would otherwise be given to a family, has been stripped away be their own desire for publicity.

But who are we (the collective we) to decide in a general way where that line is drawn? It's a deeply individual situation. Again knowledge on this specific case is largely media based, there are health care professionals who don't think it's over yet. When the professionals are in agreement perhaps then but I don't think I'm in a position to draw the line.

'cheer to the poster who called her mates over here.proves that all other debate is not allowed.'
Ironic, because it seems like that on many other threads discussing disability issues.

'The posts are very definite that there is no hope This is mainly based on media coverage..'
Based on the extensive medical evidence presented at court that the media then relay.
Agree with other posters, I've seen lots of posts from people with disabled dc, HCP's and many others and have not seen any disablist comments. They must be deleted very swiftly.
Nobody has said 'brain damaged people do not have a quality of life'.

Also, yes what an awful expression 'rubberneckers' when some contributors are bereaved parents or parents of disabled DC.

So, a TAAT, thinly disguised as interest in a completely different campaign, then.

Shame on you for using this campaign to further your own agenda. A bit like Charlie's Army using the autism awareness photos.

A lot of sentiment on the CG threads is that brain damage is the end of the world, that brain damaged people have no quality of life

no, not "people", plural. Just this individual person given his individual circumstances. I've seen nothing generic about "all" brain injured people on that side of the discussion.

Lougle and BishopBrennan's posts capture the complexity of the issues around the CG case in a nutshell. It is inherently a difficult, emotive subject. I think it's an interesting point made by the OP as to how the TIMC campagin could potentially relate to the lengthy discussion threads about the CG case.

The posts are very definite that there is no hope. This is mainly based on media coverage.

No. I think many who have reached that viewpoint have done so because they have read much more widely than the media coverage (court transcripts, position statements etc.). See the note at the top of the thread, it's all there.