New MN campaign around children with special needs

[RowanMumsnet]

Hello

Following on from this, um, lively thread from a couple of weeks back, we wanted to follow up on kungfupannda's excellent suggestion of an MNHQ-backed awareness-raising campaign aimed at - in kungfupannda's words - 'making it absolutely, uncompromisingly clear that in order to fully include children with severe disabilities, people might have to accept a bit of disruption once in a while.'

We were thinking about something along the lines of our We Believe You campaign on rape myths; that is to say, an ongoing awareness-raising project aimed at the general public, rather than a short-term campaign with specific policy requests attached. We would be thinking about pages on Mumsnet itself featuring the experiences of our posters, activity on our Bloggers Network, ye olde Twitter hashtagge, and any press coverage we can grab.

The suggestion on the thread was for the campaign to be called 'Tolerance is...', but we at MNHQ are a little unsure about the word 'tolerance' (which can suggest barely-contained irritation, rather than the kind of empathetic understanding and generosity of spirit we'd all like to see). So we were wondering whether something along the lines of 'This is my child' would work better?

Please feel free to use this thread to give us any feedback and ideas, and generally let us know what you think.

Thanks
MNHQ

I hate autocorrect and being too tired to read back, sorry for the lack of sense in the last. Hope you all get what I meant.

Just seen this. I think this campaign is an excellent idea. I don't have anything else to add at the moment as I need to read the thread.

Thank you MNHQ

I'd like people to know that the law states that children should have their educational needs met requiring Local Authorities and schools to deny need to avoid expenditure.

I'd like people to know that challenge of denial of need increasingly triggers a social services investigation for MBP amongst other things.

I'd like people to know that 1 in 5 children with HFA have either tried or succeeded at NOT becoming an adult due to the stress and poor provision.

I'd like people to know that fighting the above as well as coping with the child usually means an end to careers, family break-ups and subsequent plunge into poverty disadvantaging the children further and making their adult lives harder.

If children with disabilities were protected from discrimination, I wouldn't be told that it would have been better that my DC's were never born, as they are going to be a drain on the taxpayer as I can no longer support them.

If they were protected from discrimination, they wouldn't be getting dragged across a school field by their hair simply because they are not able to run away.

If children with disabilities were protected from discrimination, they would not be called names like R*d (I can't type it in full), sz, m*g etc, when they have a meltdown.

If children with disabilities were protected from discrimination, then I wouldn't get stared at and told I should be able to control my DD when she lashes out at someone whose bag has brushed gently by her while crying angry tears because someone has invaded her personal space.

If children with disabilities were protected from discrimination, I wouldn't get tuts and huffs when I ask for the wheelchair space on the bus from someone with a suitcase or a curtain pole.

If children with disabilities were protected from discrimination, I wouldn't get told that my DS3 is going to be a thief simply because he has grabbed a shiny keyring on someone's bag and he's "obviously not right, so it's not like he will be able to do anything else". He's 2yo. He IS at the 'cute' stage.

If children with disabilities were protected from discrimination, my Dbro wouldn't have been permanently excluded from preschool and only ALLOWED to attend Primary school for half the day right up until he left.

If Adults with disabilities were protected from discrimination, then I wouldn't have been told that I needed to die and stop scrounging one lasie's taxes simply because I had a seizure, knocked her arm, and made her spill a few drops of her drink "That she had paid for".

If Adults with disabilities were protected from discrimination, then more employers would be willing to ACTUALLY employ an adult with disabilities that require adjustments being made. My Ex and I thought about it for hours last night, and aside from the major supermarkets and Charity shops, we couldn't think of ONE shop worker in our entire town that had visible disabilities. Not OBE shop worker that was a wheelchair user. OK some might have hidden disabilities, but I doubt it's many.

My Ex went from job to job, always being let go at the end of his probationary period, simply because of issues caused by his Autism and Dyspraxia. He has now been working in a hospital kitchen for 5 years, and it's the first time since he left school at 16 that he has kept a job for more than 6 months.

So Zzzz you would ignore 30 years of campaigning, lived experiences, politicle and social research and comment to have a campaign that sits out side of what people with impairements have been trying to achieve for themselves. As mothers and relatives of those with sn you have a right to speak on your experiences and those of your relatives, you cannot speak for those who would rather speak for themselves or with people who share the same understanding as them.

No other human rights campaign would ally themselves with those that only want to make things better for one small part of the whole, you either want full civil and legal rights for all impaired people as defined by impaired people themselves or you want to argue a partial and divisive case.

Let me be clear I would much rather we had a campaign than no campaign, I would much rather that it includes all disabilities, all ages, all colours, all creeds. The one thing the movement is very good at is turning on it's self. Why their is no strong common voice coming from disabled peoples movement is that it is riven top to bottom by infighting and people having to fight for recognition and funding. Also it is nigh near impossible to come up with common goals and language. If the MN campaign is only about children fronted mostly by the carers of those children then it will do nothing to help and will be criticised for that as well as missing the point, if thats what you happy with Zzz as a legacy fine. But the millions of impaired adults who are living with out dignity and in fear will not thank you for it. Not juist my view btw go check out Black Triangle, Sue Marsh, Johnny Void, Tammy Gray Thompson, Inclusion Scotland, and many other people who say that we need a see change in public attitude to ALL disabled people not just children.

Rowan at MNHQ you started this ball rolling I think you need to come back and engage with some of the ideas that have been put forward and give some clarity to what it is your thinking of.

What you have said in your OP Rpwn is a rolling series of articles, blogs etc. Sounds fair enough but why, what will it add and who will it be aimed at? Bloggs, the daily papers, radio and tv, are stuffed full of personal stories, the triumph over tragedy, the holding up of the lived experience of disabled children as being one long round of fights and battles, all tend to add to the view of the general public of those with disabilities as objects of pity, this inturn fuels the notion that to have a disabled child is some kind of curse, and that the life of someone with a disbility is less valuable and less meaningfull as an existance than that on a able bodied child/person. This is not as simple as we belive you disability is much more complex because it covers such a wide range of people and experience not to mention how someones impairment can have very different ways of effecting them diffrently from others. Also class, wealth, and other factorsd come in to play. It can be a simple campaign but it is not a simple subject.

[Confused] Did I miss the posts that suggested leaving out 18+ or people with severe or complex disabilities? Lots of hostility here at something that's not even been said - really sad, as I think it's great to have a campaign with the aim of raising awareness, and it would be crap to have that undermined by infighting that seems to have come from pretty much nowhere. There is more that unites us than divides us, surely?

I agree Sickof I apologise again to everyone Zzzz and Mouthy in particular for causing any offence and being a PITA. I did in my last post throw it back to MN as we need some clarity as to what they are thinking and prepared to do, as this in fighting and arguing is not what I wanted.

It is though a reflection of what I have been saying that the activists who have been fighting for years such as myself see things differently and not at an individual level. This needs taken in to account.

I have read through the thread and I do feel a few have been harassed for explaining their personal experiences. The severity of disability and how disability doesn't end at 18. After all this is about children with severe disabilities. It seems that they are not our children anymore at 18 and the more severe the least you want to know. Some on here seem to have disappeared, not to return, which is a shame. How do you know it's not there only support they have in life, thats been cut. You feel it's there choice but if you read properly it's understandable why they chose to go. I believe this campaign will raise a small amount of awareness but it's still not going to be enough. Raising awareness of something so major is hard to do but when the very people who are raising the awareness are eliminating others in the same circumstances you are not going to achieve the right balance of needs to highlight.

De ja fucking vu.

I wouldn't like to post due to the comments I could receive in return. If you read back the thread you will understand what you are saying is not entirely true and I am too better off out of it.

Yes zzzzz - any step in the right direction is better than no step. I don't mind what is says at all - will go with consensus/Mumsnet, just in the interests of getting it done

When the ant-racist campaigners were formulating their first campaign in the 70s, they probably had similar arguments - "this can't just be about black people" ; "what about the Chinese"; "what about me, I'm from Estonia, where am I in your campaign?"

In the end they just had to think: big picture, big message

And after a while the ripples from one pebble started to spread, and the message gradually seeped into general consciousness. It's not perfect, but my God the UK is far less overtly racist than when I was growing up in a small town

That's all - this campaign can't change everything for all of us, but it can start to gently move negative perceptions in society in general towards disability

Oh this is horrible, maybe the idea should just be shelved if is going to be a source of such conflict and distress to some on this board?

I honestly believe that most of us just want to do something to try and create a positive shift in public attitude, at a time when propaganda is doing just that in the opposite direction faster than we can think.

I think many of us feel it's no longer enough to hide in here feeling threatened and distressed and that if we don't at least try, we are just rolling over and giving in to allowing things to get even worse.

It might not work - it might not (and probably cannot) be all things to all people - some people might not like some or all of it - what we have to decide is, is it worth trying anyway?

Fantastic post sickof.

I love the pebbles in the pond analogy - much better than my snowball!

We can't do it all, but we can start the wave and help the ripples spread.

I decided that my MIL (who is an elderly ostrich when it comes to disabilities and prefers to say helpful things like "Ahh bless") needed to come to DS4's Special School Nativity at our big church in town. She had no idea what to expect and walked into an atmosphere that was literally buzzing with noise, music and singing. She sat and cried buckets of happy tears as she saw the entire school perform in their Nativity. Children who are profoundly disabled, kids with ASD, hearing and visual impairments, kids with difficult mobility problems, kids on oxygen, kids with Downs breakdancing to Gangnam Style. It was big, it was noisy, it was joyful. Most importantly for me - It has changed the way she looks at disabilities forever.

I think that aiming our anger at each other rather than at the people who really deserve it is really counter-productive, too. Dev, it's not us who's isolated you; it's your LA and situation. In fact, many of us have offered suggestions and support of ways to get you out of your current cycle of trapped isolation but you don't like the alternatives any more than the current situation.I do really feel for you but your accusations that the people on this board are isolating you are unfair.
3socks, I am more confused by your anger as nobody is saying over-18s should be ignored and yet for years you have said they are.
None of us need to look for reasons to be stressed or isolated.

[NOTE: this post has been edited by MNHQ to remove a reference to a poster's previous nickname]

www.facebook.com/ThisIsWhatDisabilityLooksLike?fref=ts

This might provide some inspiration it's a no explanation given facebook group set up to show Disabled people doing every day ordinary things, the message being their is nothing we are not doing, the only barriers are prejudiced people.

I am not accusing anyone but comments like, I underestimate what a parent of a child with SN goes through is so wrong, it's hurtful and unfair also. I do not need this on top of everything else. I feel it's not a place I can be anymore. It's not that I don't like the ideas on offer to help my situatuion, it's either we have been there and done it or the services just aren't giving. If you feel I am ungrateful for this maybe it's not the place I belong.

shit, got dragged back in, sorry ignore that post from me, I'm not here.