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 .

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

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

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

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

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

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.

'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.

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

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

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'
Yes well I think saying that ^ about such a sensitive case is pretty shit too.

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'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.

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.

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?

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.