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 also don't like the term but maybe like calling a mc spontaneous abortion it will stop being used at some point.

Quite. Everyone is stating as fact that he has persistent low level consciousness when that is one of the things being established in court. The starting point and potential for finishing point bearing in mind the journey that would be necessary to reach that finishing point.

As I've said before I have no opinion on this for the reasons I stated earlier.

'There are lots of medical terms that professionals would not use in front of parents or on the internet'

Yes but the point was the pp said 'did you read the post about vegetative', trying to support the 'disablist' allegations when it isn't, it was used sensitively by a hcp. No amount of 'they used to say retard too' is really relevant.

My problem with the threads is it feels like there is a consensus that the medical and factual position has been established.

A new hearing wouldn't have been allowed but for the letter from the medical experts saying there was new evidence to consider.

The court will decide.

Sorry Ann, what I mean is, the team who have been treating Charlie since his admission to hospital unanimously agree that he has, as has been reported and quoted in pretty much every article about him, 'essentially no quality of life". As far as I'm aware, there is actually no debate about that, and the brain scans done this week seem to confirm that although they are currently being quite (rightly so, IMO) vague about this. The debate comes from a doctor from America saying he believes he can offer a treatment which could potentially change this. It's not quite the same as saying the prognosis of his current condition is debatable, but Im absolutely by no means an expert and can only go by what is being reported in the media and by the official statements released by GOSH.

It's all ever so sad, I keep hoping I will wake up and see news that someone has come forward with a sure treatment for him but of course it just won't happen :(,

But have I misunderstood? 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?

So at the moment only one aside say the scan is clear evidence there is such damage and such a state

Sorry by aside I meant side

Apologies op I know this wasn't what you came onto discuss.

I loved this is my child when it first happened. At that point I had a toddler I was pretty sure had Sen and I pored over the lovely photos

Thanks for the flowers polter. I've had a cup of now and I'm glad I hadn't upset you, bishop.

@MyrtleMaracas
Why the eye roll? Please explain the "right". Thank you.

What is this is my child?

'Its not a word that can be used sensitively , most hcps would know that and get their point across without it.'
In this instance it was. To allege 13 threads are disablist when the only evidence is one hcp said vegetative once is ott.

I agree the courts will decide. I believe people should be a!lower discuss it thiugh without being called voyeuristic etc

blimp it was/is (was?) a mnhq campaign to get people to focus on the individuality and uniqueness of each individual child with sen and there was a lovely gallery of photos to try to help people stop othering dc with Sen.

Calling people Disablist for having a frank and open conversation about an issue as important as this smacks of trying to close down discussion.

Thanks Ann

But is it open if anyone who tries to put the other side feels they get shouted down?

Of course not.
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.
Because it's their opinion, dammit. And they have to be superior to anyone who thinks differently.

You have to have thick skin to post on an emotive subject. It's not fair to say that even if someone strongly and vociferously disagrees with you, they are automatically trying to shut you down, it's not the same thing.

And starting a thread to claim that posters are ignorant/disablist for expressing their views very much does, as blimp says, really belittle any notion of an open and honest discussion. It's very petty really.

@MyrtleMaracas
Not trying to derail the thread, but could you please explain?

Ann

The latest I have read (from today) is that the scan makes for "sad reading" and that the parents were very upset hearing the results (apparently Mr Gard said they were "evil", so what I'm gleaning from that is that Dr Hirano may be agreeing with the doctors that very little can be done to change Charlie's current condition.

What I have read given as the reason for the new hearing is that he is maintaining that there is a small chance the experimental therapy could improve Charlies condition enough to make a "clinically significant" difference in his current state. There is as far as I'm aware no debate about what state he is currently in, regardless of previous MRI's, but I could have missed something.

I so wish little baby Charlies Mum and Dad hadn't gone public then all the frothing of armchair physicians and stalking of fb would never had happened.

I think there is a debate and my understanding is that there is as yet no evidence from the us dr on the latest scan so we don't know what his perspective is. That will become clear on Monday/Tuesday.

But if they hadn't Portia Charlie wouldn't be alive now, so with their view on the situation you can see why they did.