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New MN campaign around children with special needs

(643 Posts)
RowanMumsnet (MNHQ) Thu 31-Jan-13 09:17:22

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

imogengladhart Thu 31-Jan-13 09:27:28

Message withdrawn at poster's request.

mymatemax Thu 31-Jan-13 09:31:45

I love the idea of the campaign

Mayb I would prefer Acceptance is or Inclusion is rather than tolerance

Rather than this is my child... could it be "This is me" that way it could include adults & older children with SN.

TheAccidentalExhibitionist Thu 31-Jan-13 09:38:54

What a great idea. Like everyone else Tolerance is the wrong word. Acceptance and Understanding are better.
We lost a few really good MNetters on that thread so I'm really glad something positive is going to come out of it.

Strongecoffeeismydrug Thu 31-Jan-13 09:45:56

Agree don't like the word tolerance, But I do like this is my child.....he's a person not a DX/disorder

ouryve Thu 31-Jan-13 09:58:21

Tolerance is the bare minimum that even the most misanthropic people should be striving for, isn't it? I prefer to think in terms of acceptance. Acceptance as in these are my children. They're very different from your children in lots of ways that they can't help. Their behaviour is often odd and sometimes very challenging. They are still people with the same right to education, experiences and enjoyment as your children.

coppertop Thu 31-Jan-13 10:01:09

Another vote for "This is me" so that it includes everyone rather than just children.

People with no interest in children are going to automatically switch off at anything with the words "my child" in it.

firawla Thu 31-Jan-13 10:01:51

I like 'this is my child' and yes acceptance sounds better than tolerance.

JeffFaFa Thu 31-Jan-13 10:05:23

not sure if i get to comment as ds dosnt have a dx but i really dislike the world tolerance i dont want ds tolerated i want him understood, appreciated, accepted etc for who he is i like 'this is me'

'Equal' does not mean 'The Same'.

Physical Inclusion does not automatically mean Educational or Social Inclusion.

I don't like acceptance.

Far too many people 'accept' that my child's disability will mean he will never amount to much, and I just don't.

So please don't 'accept' my child. Engage with him, teach him things, make him laugh.

Bet you can't ...

Colliewollydoodle Thu 31-Jan-13 10:29:28

I like " This is Me " I'm a mother of DX and ADA son. " This is My Child" ? hmm too often I felt like saying this could be your child!

inappropriatelyemployed Thu 31-Jan-13 10:36:30

Great. Thank you for this.

I agree with the disagreement on the use of the words tolerance and acceptance. I actually feel strongly that the treatment of children (and all people) with SEN and disabilities needs to be seen in the context of equality. It is about rights not tolerance.

For example, it is too easy for people to see occasional buses with ramps for wheelchairs as an acceptable and charitable concession. We need to reconfigure the debate entirely. It is not about charity or pity or kindness. We should ask what sort of wealthy society allows transport to be inaccessible to people when we have the capability and money for this not to happen?

Equality is not about sameness. It is about non-discrimination, creating a level playing field by giving children additional support and making accomodations etc so that they may be given the same life chances as their non-disabled peers.

I have a research proposal in with a leading children's charity on this very issue at the moment. Data relating to the life outcomes of children with disabilities is frightening. They are far more likely to do badly in exams, employment, suffer exclusion and poverty.

The way we treat people with disabilities is a reflection on who we want to be as a society. They are US. What happens to them affects us ALL.

Inclusion is not about integration or tolerance or acceptance, it is about respecting human dignity, human rights and equality.

HotheadPaisan Thu 31-Jan-13 10:36:40

This is a great idea. Like the 'This is me' or 'This is my child' idea. Or something like 'Inclusion is...', not sure, will have a think.

It does all start with us though, if we don't involve, include, understand and appreciate kids with SNs and disabilities (DS1 has ASD), then who will?

threesocksmorgan Thu 31-Jan-13 10:39:47

why just children?
sorry but this should be about people with disabilities. not just children,.
I do not want people to tolerate my dd, I want them to accept her.
but I do think if MN HQ Are going to back a campaign, they need to get their won house in order first.

EllenJaneisstillnotmyname Thu 31-Jan-13 10:47:38

How about 'Fully included and not just tolerated?'

Also, as my DS gets closer and closer to adulthood I'm understanding the need to for this not to be restricted to children. It's much easier to 'tolerate' children with disabilities than it is adults. sad

imogengladhart Thu 31-Jan-13 10:51:29

Message withdrawn at poster's request.

AmberLeaf Thu 31-Jan-13 10:51:35

This is a good start, thank you.

I also agree that while focusing on children with this being a parenting site is a starting point, our children will grow into adults with disabilities who will be part of society.

I think this must incorperate people with disabilities not just children.

Thank you to Kungfupanda for the initial suggestion and support on that thread.

inappropriatelyemployed Thu 31-Jan-13 10:52:26

Exactly. The last thing you want is a children in need type 'poor little disabled children' campaign. You charitable able bodied folk could make their day with one kind word and £1 in a tin.

We wouldn't like the suggetsion that we 'tolerate' black people or gay people or women. All those equality battles have been going on for a long time and they continue. But on the way, they have changed the way we use language and our attitudes to what is acceptable conduct in society.

We need to see the rights of people with disabilities in the same light, whether children or adults.

That might start with the use of language!

CMOTDibbler Thu 31-Jan-13 10:56:24

I don't have a child with SN. But I do have a parent who has dementia and with her type goes problems with social interactions (ie, she has no social niceties any more), and I see how people treat her - they don't see the woman she was and is, just an annoying, rude old lady.
I'd like a campaign of 'This is me' because its not just about children, its about acknowledging difference through all our lives

I agree inappropriately.

I think that using the 'racial' test is a good way of doing it.

Should we all 'accept' black people?

Well, yes, of course, but I would feel very uncomfortable being part of a campaign that encouraged this in the UK.

What about a campaign where parents sign up to one session volunteering/being educated at a SN activity.

True acceptance comes from being educated.

And if you wanted to be 'revolutionary' about it, you could call the campaign:

'One Day More' !!!

WadingThroughTreacle Thu 31-Jan-13 11:37:01

Inclusion should be taught in schools from the earliest age. In fact, it should be instilled into the children from birth by their parents but that ain't gonna happen That's part of the reason why schools should be inclusive, it's not just about the child with SN, it's about educating the other children. Surely, this would lead to inclusion in the wider world. I am proud to say that I have always instilled it in my older child (long before I knew my younger child had issues). I also know that many parents pull the right faces/make the right noises but behind closed doors, their opinions are far away from that. Sighs.

sickofsocalledexperts Thu 31-Jan-13 11:37:34

I like tolerance - in all sorts of context eg religious, disabilist. But "This is me" is good too and the whole campaign is a supremely fab idea. Happy to comtribute any artickes etc. Maybe ask ricky gervais to chip in, given Derek? Could we add in though an intolerance of abuse using words like retard or mong? With apologies to John Lennon "retard is the nigger of today". Mong is just unconscionable.

Also, as mum to a boy who has learning difficulties as well as autism, could we sort of communicate that terms like mentally retarded or educationally sub-normal (yuk) are now referred to as learning disabilities?

Good on you Mumsnet towers!

sickofsocalledexperts Thu 31-Jan-13 11:45:20

There were some hideous figures published recently about the rise in disabilist hate crime.

It is an anomaly in our society that a gang of teens, however feral, would rarely now shout racial abuse , but would definitely still feel fine to shout "retard" or to kick the head in of the poor, learning disabled child or adult .

Perhaps we can help change the social mores, just as anti-racist campaigns did in the 70s/80s?

Lindsay321 Thu 31-Jan-13 11:49:04

It seems that the parents and family of children with special needs are judged and excluded as much as the children. What about:

"This Is Me/This Is Me" (child/parent for example but has my variables)

I think it covers the child, the adult and the parent or any of their family members who are affected.

threesocksmorgan Thu 31-Jan-13 11:50:41

I agree that inclusion should start a birth, more parents should search out the inclusive baby groups an play groups and so on.
I am anti inclusion in schools. children with sn often drown in MS I know mime would have.
but there are lots of other way to be inclusive,
but it has to be with adults too, disability is for life, not just child hood. and There is even less tolerance for adults with sn.

but I still think mn hq are being hypocritical with this.
they allow vile disablist posts and threads to stand, yet want to campaign !!
surely first off mn itself has to be sorted.

Fantastic idea, I'm in.

I agree that 'acceptance' is better than 'tolerance' but as someone mentioned upthread we wouldn't talk in terms of 'accepting' racial minorities. Is there a way that it can be worded that's more - not exactly aggressive, but assertive? I like 'This is me'.

ProtegeMoi Thu 31-Jan-13 12:06:30

Also so not a fan of tolerance and think acceptance or inclusion would work much better. After all its about accepting our children as valuable members of society and including them in activities as opposed to simply tolerating them because you have to.

'I am anti inclusion in schools.'

I'm not, but it absolutely doesn't work as it currently is. This is the physical/educational/social thing. Inclusion in schools is usually only physical. Child x is IN the classroom, therefore included. Doesn't matter that he hasn't a clue what is going on and ignored by his peers.

Excellent idea, I'm definately in me and dd have dyspraxia and ASD. 'This is me' is great because it covers not just people with SN both mental and physical but also anyone who doesn't fit the stereotype of 'normal'. The lack of respect for people who are overweight or have acne etc. is appaling, why do people think they have the right to shout abuse at anyone else!

threesocksmorgan Thu 31-Jan-13 12:13:40

it doesn't does it starlight. I am always scared of anything that will make people think it does.

LabelsGalore Thu 31-Jan-13 12:17:58

I am going for 'This is me' too.

Child x is IN the classroom, therefore included. Doesn't matter that he hasn't a clue what is going on and ignored by his peers.
@Star, you've just hit a very raw nerve here sad

eggandcress Thu 31-Jan-13 12:20:33

I think this is an excellent idea

Fairness. Equality. Dignity. Respect.

(From "Your Human Rights - A Guide for Disabled People")

AllThatGlistens Thu 31-Jan-13 12:45:04

Another one for 'This is me', I'm a mum with one DS (8) who has autism and Tourette's Syndrome and we're currently going through the assessment phase for our 2.4 yr old DS2 who is definitely heading for diagnosis soon.

I'm generally a calm, well mannered articulate person, but if I have to hear one more person tell me 'what a shame it is' or how he'll 'pick up and grow out of it' I think I'll scream.

It make me murderous, heartbroken and exasperated- the level of ignorance and intolerance out there is sickening sad

Ah sorry Labels, but I think this is a real issue in our society.

Some people tend to think that all you have to do is give a wheelchair user a ramp and then you can go back to ignoring them.

But it is much much worse for those with a hidden disability, because THEIR ramps usually require someone to actively engage with them.

AllThatGlistens Thu 31-Jan-13 12:55:03

Couldn't agree more, my elder DS is just described as weird or gets stared and laughed at if he's stimming or displaying his usual traits.

My neurotypical DD is noticing it now and keeps asking why people don't understand that my DS is different, 'just as we all are Mummy, his brain just works a little differently, why are they looking?'

She's 6 years old.

WadingThroughTreacle Thu 31-Jan-13 13:05:11

But if we take our children out of mainstream school, surely the generation growing up are going to be the same ones tut tutting at the theatre in 20 years' time. This is where I struggle with my own situation. The part of me that is already defeated by the last two years just wants to take my child the hell out and slink off to the local special school away from the stares, the judgements, the avoided eye contact and the (not necessarily deliberate) ignorant comments and be happy again, as I'm sure we would be. But there is another part of my brain shrieking, this is wrong!! All we are really doing is teaching our kids that they are not to be inconvenienced, starting with school. Oh I dunno, maybe not the right time for me to be part of this! We shouldn't NEED a campaign, it should be part of society already.

troutsprout Thu 31-Jan-13 13:09:33

Great idea
Hate 'acceptance' and 'tolerance' though... Both feel like a 'crumbs from the big table ' approach....and that just makes my hackles rise .
I would second the idea that this could be about people with sn. Not just children.
<< goes away to think>>

Instead of acceptance and tolerance how about understanding? Or is that too tricky?

zzzzz Thu 31-Jan-13 13:33:12

I think it's a good idea mnhq. I too look for more than Tolerence.

My first thought was "We're here, live with it", but I am having a tough week (British understatement).

I think it might be better as "We're here, live with us".

I'd also like something like "WE ARE MAINSTREAM" grin

beautifulgirls Thu 31-Jan-13 13:38:05

"This is me, understand me and support me..."

I don't like tolerance and even acceptance doesn't really sound inclusive enough. Definitely agree this needs to be about all people with SN not just children with SN.

HeyHoHereWeGo Thu 31-Jan-13 13:46:06

Another vote for "This is me", though also I do like "This is my child" as, in reverse of the comment upthread, I DO think it is good that if people are ignorant enough not to be touched by "This is me" (Well its not me, I'm perfect, your're a retard") how could they fail to connect with "This is my child" because everyone must surely know that a disability could happen to anyones child at any age?

sickofsocalledexperts Thu 31-Jan-13 13:48:19

What about "We're all in this together"

Heyho I think the problem with "This is my child" is that a lot of people have no interest in children and would just switch off. It needs to be something anyone (from school age children to childfree adults) can identify with, which is why I like "This is me".

I worded that poorly - I think I meant 'empathise with' not 'identify with'.

zzzzz Thu 31-Jan-13 14:07:04

I will give you a talisman…

Recall the face of the poorest and the weakest man whom you may have seen and ask yourself if the step you contemplate is going to be of any use to him.

Mahatma Gandhi

elliejjtiny Thu 31-Jan-13 14:27:39

Is this campaign about all children who have disabilities or just children who have learning/invisible disabilities?

Badvoc Thu 31-Jan-13 14:31:53

Tolerated is a shit word.
Don't use that.
Love stars idea btw.
Because all kids with Asd are just naughty you know.
<bangs head against wall>

ohmeohmy Thu 31-Jan-13 14:48:09

Liking your thinking. I'm in.

Lostonthemoors Thu 31-Jan-13 14:48:27

I like this idea- my goddaughter has ASD and I find it upsetting how lacking in understanding of her people can be.

I like these words from a children's song - don't know if they could be useful:

The more we get together
Together, together
The more we get together
The happier we'll be
Because your friends are my friends
And my friends are your friends
The more we get together
The happier we'll be

Lostonthemoors Thu 31-Jan-13 14:49:26

Don't like tolerance either(sorry)

I like:

Equality
Respect
Mutuality
Understanding
Inclusion
Sharing
Uniting

ouryve Thu 31-Jan-13 14:51:36

Wading. My kids are in mainstream at the moment (I'm about to set the wheels in motion to change that for one of them) and it's not for the benefit of people around them. I want to move DS1 to a non-maintained specialist school for his benefit. Inclusion in mainstream is impossible for him, at the moment, because the very act of being in a room with 25 or more other people is torture for him.

HelenMumsnet (MNHQ) Thu 31-Jan-13 14:52:58

threesocksmorgan

but I still think mn hq are being hypocritical with this.
they allow vile disablist posts and threads to stand, yet want to campaign !!
surely first off mn itself has to be sorted.

We do take issue with that, actually, threesocksmorgan.

It is absolutely not our policy to let vile disablist posts stand.

Any disablist posts reported to us will be deleted.

threesocksmorgan Thu 31-Jan-13 14:56:20

"But it is much much worse for those with a hidden disability, because THEIR ramps usually require someone to actively engage with them."

we need to stop saying stuff like that. if the sn community thinks being in a wheelchair is somehow easier, how the hell can we get the nt world to accept that wheelchair doesn not??
my dd is in a wheelchair, she can't walk, she needs 24/7 care. it is not easier......or harder.

HeyHoHereWeGo Thu 31-Jan-13 15:13:01

How about
"This is ... Life"
or "This is ..normal"

Or would people not get that having a disability is as normal ie natural as normal is average?

HeyHoHereWeGo Thu 31-Jan-13 15:20:14

You know how all the cool kids say "It is what it is" which is like "whatever"
How about "I am what I am"
So under a picture of eg Steve who has Down's Syndrome, you have a short description eg I am Steve. I love football, shouting at the referee, I hate homework, am trying to stop cursing, and love hanging out with my friends. I am what I am. I'm just me.

Maybe I'm trying to skip the basic stage of explaining what disabilities are, and get to the stage of looking past the disability? Are we there yet or should we start at the basic level of - Give each other a break because you never know what the other person is dealing with...

I agree that tolerance is definitely the wrong word. Disabled people don't need to be 'tolerated'; annoying people who listen to too loud pop music through headphones on public transport usually have to be tolerated. Disabled people (of all ages) are just part of society and should have the right to participate in it as much as they bloody well want to.

I can see where ideas about acceptance would be coming from, but I agree it's not the right word either. I think the issue is getting people to accept that disability is not 'abnormal' (or 'abnormality'), rather than getting them to 'accept' disabled people, if you see what I mean. The problem is that using the word will make people think of the latter rather than the former.

'This is my child' (or simply 'this is me', because children are people in their own right) is a much better idea.

I actually quite like the campaign scope have going on about disability in children's books. The gist of this is that disabled people/disabled children should be more visible in children's books - not specifically as 'disabled people' in books about 'disability issues', just 'there' as a perfectly normal part of society. The same principle can be extended to all manner of cultural forms. There is no reason why disability must always be treated as an 'issue' (and disabled people a deviation for the norm).

HeyHo: I really like that idea. Seeing the person rather than the disability is so important, and it helps to show that disabled people are 'normal'.

threesocks. I have absolutely no idea how you came to read my post as wheelchair users have it easier. They have it more VISIBLE.

threesocksmorgan Thu 31-Jan-13 15:35:53

sorry starlight I still don't get it. so it is more visible....because of the wheelchair!!
how does that make any difference?

How about "I am what I am" So under a picture of eg Steve who has Down's Syndrome, you have a short description eg I am Steve. I love football, shouting at the referee, I hate homework, am trying to stop cursing, and love hanging out with my friends. I am what I am. I'm just me.

I absolutely love that idea Heyho.

MmeLindor Thu 31-Jan-13 15:46:35

Good idea, MNHQ

I don't see why we can't have #thisisme and #thisismychild running parallel (thinking of Twitter here)

We interchanged #webelieveyou and #ibelieveyou

It could be the This Is Me Campaign - those who wish to use the term This Is My Child can do so.

Agree with 'tolerance' being wrong

How about aomehing to do with 'special' - my cousin's ex always referred to people he didn't like as being 'a bit special' - which made me so angry.

I'm not special. My needs are.

But does that sound like I'm saying the person is unimportant?

missalien Thu 31-Jan-13 15:47:27

The idea of a level playing field is thought provoking Maybe something sling those lines , "this is my playing field too"

Peachy Thu 31-Jan-13 15:51:18

If I can help in any way please holler: as you know I have 3 with disabilities and also am half a dissertation away from my MA in Autism. DS1 is a teen now and very good at speaking for himself as well (has been on school councils for a while) so feel free if you need anything from him, there was some talk locally about training him as an awareness speaker.

I also share a hatred of the word tolerated. My boys are lovely, they are just my children: same as anyone else. The things that are harder- such as handing ds4 over each day knowing he is terrified of school- are more difficult I guess but I'd never be without him.

As you will know i've had some horrible experiences- being screamed at so badly by a parent for ds1's behaviour that I hadn't even been told about, so ahrd that I was too scared of doing the school run alone for a good while; having people knocking on my door to shout at me for his behaviour; having to watch ds2 (NT) be attacked at school because it was easier than taking on ds1. hearing someone who said they'd stood at school with me the day before referred to as having stood 'in the leper corner'; being approached by parents angry that the boys are taxi'd to their special schools (2 in sn schools, different ones of course- could never be simple); teachers not realising I could hear a call saying that autism is just bad parenting (don't worry, I know different). I've
had ds1 come home with shoe bruises clearly delineated from being attacked by a group with nothing much done. DS1 made to pay for friendship from his lunch money and nothing much done. Plus the rest of course, all manner of crap.

Anything that can be done with should be.

And of course threesocks is right visible SN isn't easier. It's a whole different ballgame in some ways but not easier. We met up last year: it was a challenging meet up as ds4 kept bolting which is scary but at least ds4 could bolt. I'd have to be stupid to not realise where he is lucky.

Peachy Thu 31-Jan-13 15:54:57

Oh- sorry- yes also:

this me me / this is my child- yes

inclusion: only so far. Can be amazing, can be awful, depends on the child. Many disabled children's lives will have a bit of inclusion and a bit of specialist input: ds1 was in MS until 11, now attends a SN provision.

Whereas ds4 attends a MS provision and is drowning but LEA worship inclusion above all else. It's a balance and only one that can be quantified at the individual level.

FancyPuffin Thu 31-Jan-13 16:11:36

Great idea HQ smile

I like the #thisisme

troutsprout Thu 31-Jan-13 16:23:57

I like this from Heyho

"Maybe I'm trying to skip the basic stage of explaining what disabilities are, and get to the stage of looking past the disability? Are we there yet or should we start at the basic level of - Give each other a break because you never know what the other person is dealing with..."

I'd like to think we could already be past that basic stage of asking for 'acceptance' too.

EllenJaneisstillnotmyname Thu 31-Jan-13 16:34:41

elliejjtiny I have read it as being all disabilities. It wouldn't be very inclusive to exclude those with physical or sensory disabilities, for instance. smile I guess the problem with MN and society in general is that there are so many people with ASD and other invisible disabilities that we come to dominate these type of threads.

LabelsGalore Thu 31-Jan-13 16:48:41

I really love 'HeyHo' suggestion.
I am struggling to see how that could work with an 'invisible' disability. How could you capture on a photo the disability without giving it a name? Or would it be OK to do so?
Not sure about all that. I am too new on the scene.

Great idea and I am in 100% But I also don't like the words tolerance or acceptance particularly. Don't tolerate my child, inteact with him and treat him like you would another human being. And I agree with other posters, no-one in the UK today would tell us to "accept" people of a different race (although I do suppose some people could possibly think it is OK to say that about sexuality, which shows how there is still a problem there).

dottyspotty2 Thu 31-Jan-13 16:49:24

Whether your child has a visible or invisible disibilty doesn't make it easier for either parent some invisible disabilities are profound others not some children in wheelchairs are fully reliant on 24/7 care others not please don't make this about them and us its not at all.

Also my son is 18 his autism and LD's haven't disappeared because he's an adult but he's still my child, why can't this campaign be about disabilities from cradle to pensioner.

elliejjtiny Thu 31-Jan-13 16:52:19

Oh good. I have DS2 who has Ehlers Danlos Syndrome and is a part time wheelchair user. He is 4 and is already noticing that he gets different treatment when he is in his wheelchair.

zzzzz Thu 31-Jan-13 16:56:51

Are we writing an IEP for the nation?

So perhaps an NEP???

Should we be asking "is it SMART?". grin

The invisible/visible disability and levels of "seriousness" is a bit of a nonsense for me. I have 2 children with sn. Who looks weird isn't relevant.

If you we're asking me what defines us as a group I would say "ask us what worries us most about dying". Visible/invisible physical or is not the issue IMO

I also wouln't use the word understanding. You don't have to understand someone to treat them equally and behave normally towards them. Hell, I don't understand my DS half the time.

MmeLindor Thu 31-Jan-13 17:08:15

The only thing to think of - #thisisme is going to throw up lots of other tweets - when you use the hashtag on Twitter, you are aiming to collate all the tweets on that subject.

So, eg. MNHQ tweets something about the campaign and uses the hashtag #thisisme - what turns up? Lots of unrelated tweets.

If we have something more unique, it works better. #thisismychild for instance doesn't throw up any other tweets.

EllenJaneisstillnotmyname Thu 31-Jan-13 17:20:05

This is my life?

threesocksmorgan Thu 31-Jan-13 17:25:53

dottyspotty2 so agree. I have always felt that we should all stick together, whatever sn.

WilsonFrickett Thu 31-Jan-13 17:26:29

I think it could use being a little harder-edged to be honest. Been thinking about it today I keep going back to 'we're here, we're queer, get used to it'. (not as in that's what we should use, but that's the tone I think we should be aiming for). I don't want acceptance or toleration for my DS. I want full blooded equality. I want his issues and support to be utterly boring. Because they don't need a second thought.

Liked heyho's suggestions.

What about 'whatever' as a tag line?

skratta Thu 31-Jan-13 17:27:01

Could we have something like Human, as in, we're all human. Or Live My Life?

Or In My Shoes, as in walk a mile in my shoes. So, My name is Ella, I have .... I love singing, dancing and listening to music, especially to Justin Bieber, but everyday I face teasing, humiliation, exclusion, bullying and isolation.Walk a mile in my shoes.

Probably a bad suggestion, sorry if it is. Mile In My Shoes might work better though.

skratta Thu 31-Jan-13 17:28:05

That was using DD3 btw as an example, but it could work for others too?

threesocksmorgan Thu 31-Jan-13 17:28:19

mile in my shoes. Like that
as long as no mention of " walk" wink

Ilisten2theradio Thu 31-Jan-13 17:32:32

I like bothe Scratta's and heyho's ideas.
I hate "tolerance" it is soooo wrong. Everyone wants so much more than that!

skratta Thu 31-Jan-13 17:41:22

Good point threesocks. My dbro would be particularly annoyed about that! Dd3 has no whhelchair, but other less visible difficulties, and they both have and will face so much hatred and disablist comments and actions, it's scary that someone can look at my dd and think 'retard' or my brother and think 'weirdo'. How can anyone connect a beautiful little girl, or my amazing brother, and think that?

skratta Thu 31-Jan-13 17:42:30

Hmm, how about live a mile in my shoes instead then?

zzzzz Thu 31-Jan-13 17:43:41

I used to sing " this little dsname of mine I'm go an let him shine", a bastardised version of happy clappy "this little light of mine".

What about "let us shine".

Personally I don't like lists of humanising characteristics and photo of child.
I prefer things like there are x% people with sn in the population, so if there aren't x% in your church, at your pool, in your cinema, in your office, in your child's class, at your party, you are part of the problem. We are the x% and we are here to stay.

MmeLindor Thu 31-Jan-13 17:46:50

Zzzzz
TheInvisible

That is good - how many of you have been tutted at for taking your family to a cafe. I like the thought of getting in the faces of those who are ignoring you.

theDudes when I suggested 'understanding' I meant as in 'to treat someone with understanding' but you're right, that's not quite what's needed either.

MrsDeVere Thu 31-Jan-13 17:58:39

'Inclusion - Not Just a Word'.

Something I often mutter in my day to day life.

This will be a sensitive and complicated campaign to get right. But I think it is worth it. I am very happy to see a well-known, mainstream parenting site take it on.

zzzzz Thu 31-Jan-13 18:07:29

Sn is not a very exclusive club, anyone can join any time, any place. Race crede gender class anyone at all.....come and have a look at the "facilities" in case you join us one day.

I know a lot of people see someone using a wheelchair and they only look at the chair. Or they see a child with disabilities and only speak to their parent. Or they only see the disability - so a child with Downs syndrome becomes 'that Downs kid'.

So how about something like "Look at me" or "See me" or even "Look into my eyes"?

HeyHoHereWeGo Thu 31-Jan-13 18:10:19

zzz I like the stats approach too.
I suppose I'm thinking that people always want a name -"Whats wrong with her?" "Whats wrong with her legs" "Why does she look funny" and sometimes, if in a genuine conversation, I can have a full conversation with diagnosis, history, name of condition;
but sometimes if its just a random teenager asking, some person passing in the street, well I just want to say "whatever, its just the way she is" "thats just the way she was born" with a shrug that says Get over it.
I kind of like the This is me, so what? tone, and thats what I was trying to capture with my (fake) description of "Steve" that does not name his disability.

If 1 in 52 boys have Autism, and you add the stats for other disabililties, well, the chances of having a child with a disability are actually pretty high, at least, higher than I think the majority of TTC realise.

Then add those who become disabled during the course of their lives. We're not talking insignificant numbers. Do we want these children and adults as part of our society, and contributing to it (I don't mean purely financially btw)? or not?

skratta Thu 31-Jan-13 18:26:44

I like Look Into My Eyes

The reason I think naming the disability is a good idea, is because the disability is part of them. My dd is made up of many things, one part is her disability, just like another is her wonderful personality, the colour of her hair, whatever. I don't want my dd to be talked about as if she was NT as such. The disability is part of her. That's all there is. She's a human being, has a wonderful personality, from my view, though sadly not to disablists, she's my beautiful young daughter. I want them to talk about HER, what she likes. What she loves, what she suffers because of ignorance or disablism, and I feel that not naming her disability is like dismissing it.

She needs equality, she needs people to think and not dismiss her or tease or bully her, and she needs people excepting that when you make friends or talk to my dd, she has a disability. I want them not to care, but I also want them to understand that when you choose to be friends with dd, then that friendship and attempt at understanding includes ALL of her.

I agree with the This is me, so what? Approach, but I want people to realise that the 'me' (or rather, her) includes her disability. As in, I have a disability, who cares?

skratta Thu 31-Jan-13 18:31:52

Yes, stats like that are important. The one in four suffering at some point, I think, with mental health issues brought home to me how important it is to recognise and talk about MH issues for instance. Bringing home the reality, that % of society are being bullied, isolated and discriminated against, because of the way they were born, developed or because of something later in life- something beyond their control, that might affect someone? As in, do you think we should discriminate against % of society because they aren't the same?

KeepOnKeepingOn1 Thu 31-Jan-13 18:31:54

I suggest 'Diversity is ...'

Can be simply completed - 'cool' or not - 'an evolutionary biological imperative' etc

Links to the dance group - maybe they would be willing to endorse a campaign celebrating difference (ooh Ashley Banjo blush)

Can be ended with 'Diversity is me'

Links to the struggles of other oppressed groups

thereonthestair Thu 31-Jan-13 18:34:59

I think this is me is too soft. Personally I think something to point out just how's "normal" disability is. Almost like "nothing special" rather than something special to show that it's not that unusual and then the stats. I do like live a mile in my shoes though, or even live a minute in my shoes... Which in ds case happen to have Afos in them!

thereonthestair Thu 31-Jan-13 18:36:04

Oh and I hate diversity as a tag. I give diversity training for work and it really is an overused term which means very little.

skratta Thu 31-Jan-13 18:42:13

Also, for See Me/look at Me, there could be something like-

Look at me. Past my wheelchair. Past my speech problems. Past your preconceptions. See me. All of me.

Or just...
Look at my disability. Then look better. Look at me .

skratta Thu 31-Jan-13 18:45:04

So, thereonthestair-

Not Special, Just Me?

But I think, to have a name like that, facts would have to be there straight after it kind of sounds wrong.

skratta Thu 31-Jan-13 18:46:25

Or maybe,

More Than My Disability

Peachy Thu 31-Jan-13 18:52:57

When I worked for a national cancer charity we used the 1 in... thing a lot too, it made people realise that actually it's them, people they know- real life. Not just the other people often like to think.

Otherwise you have to be careful: the this is me get over it approach, whilst appealing to my attitude, doesn't work for many with disability who may well be struggling with a recent dx or other confidence issues: the Sn world- we're a diverse group for sure, there's no one way that's right for people to feel about themselves or approach their lives.

I'm being assessed for AS: I've felt a LOT better about how I am since getting a label, it explains so very much; but there are as many people out there who hate labels, think they are manufactured and would hate that idea.

In terms of slogan / # I always prefer the 'no child left behind' type approach or 'every child matters'- a stated aim that is also inclusive. It doesn't say you have to be happy or want a label. I'd much prefer something along those lines. Plus, if you talk about say ASD means this or CP means that- well according to my Paed 60% of disabled children in my region have no label. The best one Is saw suggested anywhere was just #inmyownright? We can always add bits- valuable, wonderful, fantastic, valid, a legend to move it forwards whilst admitting that actually the opinions and senses of self amongst disabled people and carers are as diverse as those amongst the population as a whole

Peachy Thu 31-Jan-13 18:53:32

I do also like lookatme I have to say

Peachy Thu 31-Jan-13 18:56:03

Also a note of caution.

If we go too far down the nothing special road- well certainly my BIL thinks 1 / 52 boys with ASD means it's now NT and not Sn and should stop qualifying for any help, financial social or educational.

My boys aren't 'nothing special', they do stand out as different: they just do. That's fine though, i'd rather embrace the difference.

#embracedifference ?

Peachy Thu 31-Jan-13 19:01:55

Oh the Look Into My Eyes One

nice but no

If you look into DS1's eyes (autism) he will meltdown.

WilsonFrickett Thu 31-Jan-13 19:02:17

See Me was a very successful Scottish Mental health campaign which I believe is still running so I think we should probably avoid that.

I think pictures of cute children is definitely not the way to go - how many times on here do we talk about 'not so cute when they're 30?'.

I'm liking the idea of stats more, or something clever with words. I got an envelope from cancer research today (in a mag) and it said 'Cancer won't care if you put me in the bin' - I was on the way to put it in the bin and it did make me stop and think.

Some other thoughts were:
Disability. Don't make it a dirty word.

Same. Different. Whatever. (#whatever)

And something around adjustment (which is where this all started, wasn't it?), something like 'He can't adjust his face. But you can adjust your reaction.' Will keep thinking. But def agree with pp who think it should be more hard-hitting. I wouldn't be happy with a 'bless the pretty disabled girl' type thing. (not that anyone's proposing that but you know what I mean)

zzzzz Thu 31-Jan-13 19:02:37

"Give a man a fish and he will feed his family for a day....give a man a net..."

"Give a child a TA with little or no guidance and sit him in the corridor to keep him from disrupting your class and he might be adequately babysat for his school years.....give a child focused well thought out differentiated education and intervention and you give him the tools to build a life on"

WilsonFrickett Thu 31-Jan-13 19:03:49

S'not very catchy though zzzzz grin

Peachy Thu 31-Jan-13 19:04:49

Oh and YYY to adults

every child now is an adult

DS3 gets praised for being so huggy

bet they won't when the cute 9 year old is a big 38 year old

zzzzz Thu 31-Jan-13 19:09:38

grin wilson I know it's been a grinder of a week.

I wish people would get that massive intervention is worth it on every level (financial, social, moral) if it gets you even one step closer to independence.

"Help me to do it for myself."

FancyPuffin Thu 31-Jan-13 19:09:48

What about #mynameis

People so often put the disability before the child.

skratta Thu 31-Jan-13 19:10:03

Oh yes, that's a problem!

It's already a problem when people dismiss SN as 'being naughty' or even 'lazy' which my dbro was called once. This needs to be handled carefully. I like #inmyownright because it says everything really. SN isn't NT (can't think of the right word exactly but you know what I mean), it is different for everyone, but more to the point,everyone is different, and 'everyone' includes people with SN.

Peachy Thu 31-Jan-13 19:10:51

zzzzzzzzzz I get where youa re coming from but IME it would go like this:

'Give a child a TA...'

'what? give a child a TA? from my taxes? Maybe if their parents actually taught them how to behave the little brats..'

besides two of mine never disrupt anything, they shut down and get ignored completely instead, ds3 is in a SN School now but poor ds4 has to be carried in screaming every day as he is so scared but LEA only gave him a 5 hour pw statement sad

RowanMumsnet (MNHQ) Thu 31-Jan-13 19:16:58

Hello all

Thanks so much for all the input. We will try to read and properly digest it over the next few days, but you're obviously still in full flow at the moment - just wanted to let you know that we're reading it and will be back.

Oh yes Peachy I should have thought of that! blush

I really like skratta's suggestion of "Look at my disability. Then look better. Look at me".

zzzzz Thu 31-Jan-13 19:21:56

I hate people looking at us all the time.

hazeyjane Thu 31-Jan-13 19:22:42

I think this could be such a good thing.

Two things I want to add, just to be thought about really is -

There are many, many disabled people who have no diagnosis (I think I have seen the figure of 40 % of children with special needs with no diagnosis, but would have to find where I read that!). Or they are on the long, long road of testing, which can take years. With ds (who possibly has a rare genetic condition, but no confirmed diagnosis), I have encountered many difficulties with relation to this status of 'undiagnosed'. I think many people are unaware that is is possible to have severe disabilities but have no name for what is causing those disabilities.

The other thing is the element of fear. I think many people are terrified of the whole idea of disability (in all it's many forms), they can't bear to think about it...the idea of having a child with disabilities, or they themselves becoming disabled is so frightening, that it becomes the unthinkable and then the un-talk-aboutable. The reality is that disability is part of life, people with special needs aren't 'they', 'they' are us.

zzzzz Thu 31-Jan-13 19:25:14

I think giving people the vocabulary to talk about it is helpful. People are scared of offending.

hazeyjane Thu 31-Jan-13 19:26:54

I used to sing " this little dsname of mine I'm go an let him shine", a bastardised version of happy clappy "this little light of mine".

curse you, zzzzz, this made me blub.

'Don't make me want revenge when I am your boss!'

Saw something like this on an Aspergers website.

hazeyjane Thu 31-Jan-13 19:29:15

Sorry, I was actually hunting back through the thread to find this

there are x% people with sn in the population, so if there aren't x% in your church, at your pool, in your cinema, in your office, in your child's class, at your party, you are part of the problem. We are the x% and we are here to stay

^^that is what i think he campaign should say.

determinedma Thu 31-Jan-13 19:29:22

It seems impossible to agree on one particular message. What the parent of one child approves, another disagrees with. How to find a message that will speak to those who don't understand, when those who DO understand can't agree.I like " don't stare at me. See me"

Trigglesx Thu 31-Jan-13 19:29:28

How about "Don't just look at me. SEE me."

mymatemax Thu 31-Jan-13 19:36:33

"get to know me, my name is ..."

Lostonthemoors Thu 31-Jan-13 19:43:17

Would it be good if the campaign actually encouraged the appreciation of people with SN's uniqueness, individual personality and talents by showcasing certain positive projects?

My DH was at a children's farm with DS recently and was charmed by an adult with SN who came up to him and very sweetly asked 'what's your name?' Later he realised they must have a project where adults with SN help out at the farm as he saw the guy again with friends doing some jobs later round the farm - he called out 'hi DHname' very loudly!

Surely that's the kind of thing we want more of?

Grey24 Thu 31-Jan-13 19:46:35

I'm just so glad MN is setting up a campaign/info thing about SN - people might actually take notice of it and be interested by it because it's being done by Mumsnet, which would be so helpful and such a relief - it could make a real difference. Thank you.

HotheadPaisan Thu 31-Jan-13 19:51:48

I'd rather it was called specific needs, special just isn't right. It's not a special need, it's a difference which has requirements in order to be included.

HotheadPaisan Thu 31-Jan-13 19:54:53

One idea - those info pages that are dotted around the site, there could be one with stats and facts and a section on language/ terminology. A myth-busting section too, MN is good at those.

Cornycremegg Thu 31-Jan-13 20:23:21

I think you need to get people to question/look at the assumptions they make.

Most people will probably believe that they are 'inclusive whilst rolling their eyes at the screaming child that can't sit still in the restaurant.

there are x% people with sn in the population - CaFamily says 1 in 20 children, and about 20% of the total population.

I've been googling stats. I found one that says 17% of people have some kind of disability, but only 17% of them were born with it. Could be you next ...

zzzzz Thu 31-Jan-13 20:35:41

The reason I said x% is I have no idea how reliable the stats on line are, but presumably there are people ho know??

Marginalising x% of your population doesn't make sense.

zzzzz Thu 31-Jan-13 20:37:29

And what % are mothers, fathers, sisters, brothers, lovers...of the x%????

PeneloPeePitstop Thu 31-Jan-13 21:40:22

#it'snotcontagious #fightthefear #justlikeyou

ouryve Thu 31-Jan-13 21:48:58

I do like the suggestions of #SeeMe.

It's punchy and it's a command. It's a command firstly to stop ignoring people with disabilities and secondly, to take notice of who they are. And it's a good, short twitter hashtag, because I do find long hashtags both difficult to type correctly and such a waste of characters.

ouryve Thu 31-Jan-13 21:50:53

Actually, maybe it's too punchy. It's rather heavily used.
https://twitter.com/search/realtime?q=%23seeme&src=typd

zzzzz - yes, I only posted the 1 in 20 figure cos I was quite shocked! And I do think people feel that disability is something that happens to other people and therefore doesn't need paying attention to.

WilsonFrickett Thu 31-Jan-13 22:18:00

See Me already exists.

HeyHoHereWeGo Thu 31-Jan-13 22:22:20

I'd rather it was called specific needs, special just isn't right.

Love this^^^

zzzzz Thu 31-Jan-13 22:37:55

Additional needs makes sense to me but it is irritatingly "an" I when you us initials. grin

ouryve Thu 31-Jan-13 22:47:25

What ever tags we come up with, we're going to have to use our twitter and google fu to make sure we don't settle on something that has either been used already or is simply going to get lost in the noise.

WilsonFrickett Thu 31-Jan-13 22:50:39

Doesn't additional needs make it back about the disabled person? They have extra needs, need extra stuff, need extra support. Whereas I thought the original point was 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.

The action has to be on the audience to do something within their own behaviour, I think.

threesocksmorgan Thu 31-Jan-13 22:52:39

I will ask again, why just children?
does disability go away at 18?

HotheadPaisan Thu 31-Jan-13 22:53:02

Yes, inclusion is understanding that.

HotheadPaisan Thu 31-Jan-13 22:54:58

#BeInclusive maybe or #IAmInclusive

HotheadPaisan Thu 31-Jan-13 22:55:52

CSIE might have something useful, I'll have a look tomorrow.

HotheadPaisan Thu 31-Jan-13 22:57:43

And this is why you need the language/terminology guide, people don't always mean to offend or exclude, they just sometimes don't understand or make a mistake or are worried about asking a question or saying the wrong thing.

Just a thought... If there's going to be a campaign for disabled children/young people (or just disabled people), might it not be a good idea to ask them what they would like (rather than asking their parents)? And to get them involved in it all in a meaningful way...

AuntStressie Thu 31-Jan-13 23:14:33

How about 'Don't dis me' as in disability,disorder etc.

zzzzz Thu 31-Jan-13 23:16:09

arbitrary I think that would be beyond my two, but for those who can, of course. I don't think you have to be a parent to have an opinion.

zzzzz Thu 31-Jan-13 23:21:01

I think it's important for people to be made more aware of the law (including me blush ). I've lost count of the number of times mums of toddlers post about not knowing if their children will be "allowed" in ms school.

It's a steep learning curve and the more accurate information you can get earlier the better. How many parents do we tell about How to get a statement, DLA or how to self refer to SALT? How many don't get that information?

Hellenbach Thu 31-Jan-13 23:37:47

Can you see me?
1 in 7 children have special needs.
Sometimes you see the disability and not the child.
Sometimes you see the behaviour and not the disability.
Can you see me?

blackeyedsusan Thu 31-Jan-13 23:58:29

I prefer things like there are x% people with sn in the population, so if there aren't x% in your church, at your pool, in your cinema, in your office, in your child's class, at your party, you are part of the problem. We are the x% and we are here to stay.

anothe vote for this.

2tirednot2fight Fri 01-Feb-13 06:23:28

How about " I matter ". Taking the well used third person every ........... matters and putting the child where they belong at the fore in the first person seems pretty powerful, potentially, to me.

proudmum74 Fri 01-Feb-13 07:13:30

Great idea - as a parent of a DC with a very visible disability, I like the idea of the "this is me" campaign, as strangers rarely get past seeing her disability to see the amazing little girl that she is.

As an idea,I loved the "just like you" campaign created by US high school students to try and promote friendship between 'normal' and disabled pupils

hazeyjane Fri 01-Feb-13 07:56:49

I think if it is to be a campaign about disabled adults as well as children (or children and young adults?) then it would have to be as Arbitrary says, something which involves people with disabilities. However, I am assuming as it is Mumsnet, and specifically Mumsnet Special Needs Children, where this is being discussed - then it would be natural to assume that it is a campaign to discuss children with special needs (specific/additional/super powers....delete as applicable!)

zzzzz Fri 01-Feb-13 08:04:15

Would it work if we didn't explain who the x% are to start with.

The X% are however much more likely to be attacked, excluded, die young, receive poor health care, be homeless, pay so much tax a year, etc....

Then I am the x%, but no explanation as to why.

Then x%, part of your reality.

I think it's generally best to ask (disabled) people of any age about what they'd want and to get them involved rather than to do it all on their behalf. I guess I just feel that if the whole point is inclusion then you have to start the campaign on a participatory basis. If the idea is that we (as a society) should see (and engage with) disabled children, then the campaign should absolutely include them in a non-tokenistic way.

There are lots of academics and activists who do a lot of work around disabled children and young people's participation in society who might be happy to work with MN on this kind of project if they were asked. There are people with experience of working and campaigning with people with a wide range of disabilities who might have ideas about how to make the campaign inclusive as well as about inclusion. And, of course, there are plenty of parents on MN who know how to find out their own children's views on matters that affect them.

zzzzz Fri 01-Feb-13 09:20:05

arbitrary I understand where you are coming from but have some reservations about what you've said.

Some of that is because I dislike the terminology "disabled people" or "disabled children" even with brackets. Person first is becoming more and more important to me. I understand that isnt so much of an issue formothers though, so focusing on the rest.

I'm not sure why you think "they" aren't involved. In my children's case, mn isn't somewhere I let any of my kids hang out because they are school children. I'm sure there are a good x% of mnetters with disabilities.

I do think there are charities/groups who would love to join with mn on many issues/campaigns but I guess how I felt about that would be very dependent on who they were and what their message was. Many of mn sn are very disillusioned with some of the larger organisations.

hazeyjane Fri 01-Feb-13 09:24:02

Aaah, just seen this is in campaigns, and not special needs children - sorry.

I think it should definitely include the 'voices' of children/ people involved, but one of the reasons why I think a campaign like this is important ( and maybe differs from the comparisons to 'racial' issues that were mentioned earlier) is that people with like ds ( partly because he is only 2.7 and partly because he has no speech and limited understanding) need someone to speak out on their behalf.

hazeyjane Fri 01-Feb-13 09:25:31

Sorry, that should be, ' people like ds'

Well the bracketed disabled was mostly because the point is about people of any age. just in this case the people are those often called disabled, as opposed to, e.g. red haired people, or tall people. Although I agree that (with disabilities) would have been a perfectly sensible alternative. While writing it I was thinking more about trying to foreground the people bit (and failing, obviously).

I think my issue is that this sort of thing can so easily become a campaign on behalf of or in which parents speak for, and that doesn't seem to be quite the right thing (IMO). That doesn't mean that the kids should be running free on MN or anything; just that there are other ways that children and young people could be included rather than us all just deciding what kind of campaign we should have on their behalf. MN could ask for advice about how to do this (without tethering themselves to anyone else's agenda). And one source of such advice is all those parents who talk to or otherwise interact with their children every day. MN certainly has plenty of that kind of expertise on hand. I'm just a bit uncomfortable with the idea that it's sufficient for parents to speak for their children.

(I have a disability, fwiw. Although I feel like some kind of fraud for putting myself in that category, which in itself is indicative of the wider problem.)

Hazey: I think I just wouldn't want to under estimate any child just because they have 'SN'. I'm willing to bet that you are good at understanding what your DS communicates to you (in his own ways). I guess I don't want to think that his ways of communicating or being in the world are 'lesser'. They're just different.

And there are lots of children with SN who can articulate their views very effectively. (Something that I'm struggling to do).

hazeyjane Fri 01-Feb-13 09:41:54

And one source of such advice is all those parents who talk to or otherwise interact with their children every day. MN certainly has plenty of that kind of expertise on hand. I'm just a bit uncomfortable with the idea that it's sufficient for parents to speak for their children.

Sorry, I don't understand how you haven't just contradicted yourself, surely MN are doing exactly what you are suggesting - ie talking to the parents 'who talk to or otherwise interact with their children every day'?

Peachy Fri 01-Feb-13 09:47:46

Can ytou see me?- I wonder how someone with a VI woudl feel about that? If someone asks me that and I haven;t got my glasses on teh answer is no. mind I DO have AS and am very, very literal.

I love this littlelightofmine, and I love the bit about if not x% in your Church etc. We have a hobby where hardly anyone in 2000+ participants is black or has SN (my ds1 is an exception, I knjwo of a few others but they are not reated wonderfully). I'd quite like to shoce it up some of their behinds.

Peachy Fri 01-Feb-13 09:48:18

(I shoud point out hobby7 divided into teams or clubs and ours is fine and accepting, we chose carefully)

I don't think so (although I'm not sure I'm being at all clear). There's a difference between asking parents with plenty of experience about how to engage meaningfully with children with a range of different abilities, and just taking what they say about their children to be the same as what their children's position would be. It is good to both listen to what parents want and have children meaningfully involved (which may have to start by asking their parents how that might be done).

Still not making any sense, I bet. Explanatory powers elude me! Anyway, carry on with discussion that makes actual sense...

Peachy Fri 01-Feb-13 09:49:55

U#I have as, i HAVE DISCUSSED THIS WITH DS1 AND DH (dH AHS mh PROBLEMS, ALSO TECHINICALLY A DISABILITY).

i HAVE NOT DICUSSED WITH DS3 OR DS4 AS THEY DO NOT HAVE THE CAPACITY TO UNDERSTAND

Peachy Fri 01-Feb-13 09:50:18

Gosh sorry unintended caps, like I say poor eyesight

Sorry, wasn't trying to be offensive. (Really doing badly here).

hazeyjane Fri 01-Feb-13 09:52:10

Sorry crossposted

Well I spend quite a lot of my day struggling to understand what ds wants at the moment, because every sign is either -'duck' 'hand tap' (can mean anything) and 'taps top of head' (usually means Fireman Sam), but yes I probably understand ds more than anyone else. But when it comes to asking for things on his behalf, I have to use my voice and my anger to get it. I have just filled out the Pathfinder self assessment form, and every question is worded from ds's POV, eg - 'My hopes and dreams for the future are....', 'You can best support me by....' etc. At ds's age it is obviously my job to try and answer on ds's behalf as best I can.

As he gets older hopefully he will be able to communicate his needs better for himself. I think there are definitely older and other children who would be able to speak for themselves - I am thinking of one of the bus threads where Dawndonna's dd came on and wrote a post that floored everyone with it's eloquence and directness. However I guess she wouldn't have been on here without her mum being on here, they were a team.

HeyHoHereWeGo Fri 01-Feb-13 09:57:57

We could start with ourselves, or seeing us as being part of the great proportion that has no idea about disabiility.

So wrt this: 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.

Our campaign could include say Me saying "I understand that the child shouting in the cinema may be really enjoying the film, I understand that just because I dont know why he does that doesn't mean that there is no reason" Or thoughts like "I would never say "all that child needs is a good slap", because I know disability cannot be beaten out of a child" or "I never use the word retard as I know it is offensive and only ignorant people use it"

(I'm thinking back to that panto thread and the fact the some people need the bloody obvious pointed out to them)

(We could even get provocative - Would you call this person a nigger? Thought not. So why would you call that person a retard?)

zzzzz Fri 01-Feb-13 09:58:25

arb I don't think you are being offensive. People are just responding with their own thoughts.

Well, yes. I'm all for parents and children being teams. And absolutely happy for kids who wouldn't understand or get anything out of this sort of thing to just get on with stuff that does matter to them (because their agenda is certainly more important to their lives than mine).

Tbh those kind of forms are exactly the kind of tokenistic bollocks I'd want to avoid. Indeed for 2 year olds any official form worded as if it's actually written by them is generally just stupid.

zzzzz Fri 01-Feb-13 10:00:38

heyHo I like that.

zzzzz Fri 01-Feb-13 10:04:01

When you have sn, what age you are is not always a good indication of where you are with forms etc. For many it will always be a guess as to what their dreams are.

Tbh, even without SN, age is not always a good indication of where you will be wrt forms. I have no idea what I'd put if I was expected to record my 'hopes and dreams' on a form and I'm nearly 33.

TBH, I don't like the idea of a campaign, I have always said you can not raise total awareness of every disability/special need etc etc and what each and everyone looks like and concerns.

Inclusion is exclusion for some.

Something CAF used to always highlight too, a disabled child means a disabled family.

Then for us we will still be the outsiders even among a group of disabled similars, never mind the whole population in general.

Without sounding woe is me, my life/style with DS is horrendous and terribly isolating, I personally feel not even those who think they are going through similar, really are and hence really know. I would not wish this on my worse enemy and I have lots, but then theres many due to DS. However if anyone should want an awareness into our life, living as a disabled family they are welcome to come along.

MmeLindor Fri 01-Feb-13 10:18:46

Arb
I think that it is important that it is an inclusive campaign - at the moment it is mainly posters who have SN or whose DC have SN who seem to be posting on this thread. It can be quite intimidating to take part in a thread like this, because I am worried about using the wrong terminology or offending someone. I would like to offer my help in the Social Media side of things, because that is what I know about.

I am wondering about including DC in this by getting them to write or draw about themselves. If they are not able to do this alone, perhaps a sibling or a school friend could help. We've had girls with SN write for Jump! Mag - I'd be willing to publish a couple of articles on there for the campaign. Sure we could get some more bloggers involved, if you wanted that.

SallyBear Fri 01-Feb-13 10:19:23

I am a person, just like you.

I think that this shouldn't just be about people with social communication difficulties but also those with craniofacial syndromes, Syndromic conditions, life limiting conditions and people with profound disabilities.

my 12 year old can't read or write, in fact he can't hold a pen, he can not tell you about his life..........only through his behaviour

I have to agree with Sally though, it should cover all disabilities, however those with multi disabilities and are challenging and complex will still be outsiders and isolated.

hazeyjane Fri 01-Feb-13 10:34:58

I agree, Sally.

I guess one of the huge difficulties about this sort of campaign is that the word 'disabled' is vast, and covers so many different issues, and levels of difficulty.

The form is designed to cover from birth to age 25, so I guess they have to use fairly vague and wide ranging questions!

I was only saying about it to demonstrate that in a lot of cases parents have to speak for or on behalf of their children (whether because of age, learning disabilty or communication difficulties)

BlueyDragon Fri 01-Feb-13 10:40:09

I don't have any personal direct experience of SN or disability so please don't flame me if I'm clumsy here, but I did have an idea slogan-wise.

Would "This is me. How do you do?". The idea is that the second half expresses the fact that the person speaking is part of society and can/should be treated as such; any picture/sub text accompanying can express the SN and anything else that might be appropriate - whilst not everyone is capable of shaking hands or verbally expressing "How do you do?" you can use whatever goes with the piece to show that different forms of expression are still a greeting and an inclusion in society. Hash tags could be #thisismegreetingyou or #thisisoursociety.

Just a thought.

threesocksmorgan Fri 01-Feb-13 10:47:18

devientenigma sorry but your wasting your time, this campaign will be of no use to people like us.
it is all about the acceptable face of disability, cute kids.
adults and cute kids that don't tick the boxes will be on the outside of it as usual.

hazeyjane Fri 01-Feb-13 10:49:05

wow, i find that quite hurtful, threesocks.

shock

I like 'Don't Dis me' - who said that?

threesocksmorgan Fri 01-Feb-13 10:50:32

why?
this is a campaign for sn children.
I have asked a few times about adults.....no answer.
so it should imo be inclusive, age and sn all included

'Inclusion is exclusion for some.'

dev I don't agree. I think it is BAD 'inclusion' that is the problem.

For some, inclusion is a special school. DS is included in education now he attends one. Before he was IN a mainstream classroom, but he was definately not included in receiving an education.

TBH I feel the campaign will also bring along the trumping and the divide between us parents of disabled kids.

I really don't care if I get flamed for this but there is already a difference between mild, moderate, severe and profound. In how we engage and communicate with.

Then add each and every individual disability the child/person has on top of this, it equates to the differences.

E.G many children with my sons disabilities find it extremely difficult to brush there teeth for one reason or another. However my son also has a heart condition meaning bacteria in the mouth can cause a fatal infection. Now if he was mild learning disability he may be easier to engage and be quicker at being supported iyswim.

however if my DS was to be included in any social setting whether it be his special school or something else, he has already excluded himself. All depends on how you want to perceive whats said.

Well, I got tired of telling the stupid autism outreach teacher that due to spikey profiles, there was actually more of a difference between two children with autism, than there was of two NT children.

She never grasped that and insisted that stupid generic ASD provision suited ALL children with ASD.

I think the same applies across the disabilities. Disabled people are not a homogenous group, and I think that people really need to be educated about this too.

Disabled people People with disabilities - obviously- are not a homogenous group

threesocksmorgan Fri 01-Feb-13 10:59:25

StarlightMcKenzie oh god yes.
I remember a teacher calling dd and others "athotoids" and saying things like..."athotoids do this"
I have yet to me 2 that are the same

I still feel like 3sock in how I don't fit, but then if DS doesn't fit anywhere, why should we.

SallyBear Fri 01-Feb-13 11:04:22

I have two dc with ASD and I have two dc with a craniofacial condition both of whom are deaf with one of them having ASD.

I would like state that there is a huge emphasis on Social Communication Disorders here, but few people seem to see the other face of disability. Those children who endure a lifetime of pain, suffering and ridicule because their bodies fail them and because they "look funny". Children who have had major reconstructive surgeries. Some of these children don't have learning disabilities but they are expected to have a lower IQ JUST because they look different and are unable to speak properly.

Some of these children may never be able to get a job, get married and have children because Society has already written them off.

threesocksmorgan Fri 01-Feb-13 11:05:35

that is why I think we are wasting our time.
all people want is a campaign about children, but their children will be adults one day. and the disability will still be there and so will be horrid stuff.

silverfrog Fri 01-Feb-13 11:08:11

what about 'think again'?

as in: think you can have formed a proper opinion about me from just one look/stare? think again. then onto the 'this is me' side, and 'don't dis me'

think again would cover the panto type situation - 'you think you know why I'm doing this? think again', and could be used to cover many different situations/disabilities.

I agree it is tricky to come up with something snappy that is going to cover all disabilities, as disability is so varied. maybe we ought to be looking at getting a 'brand awareness' going, with different facets to it - kind of a 'mumsnet against disablism' (not v snappy either - am sure others can come up with a better tag), and then whichever angle is being attacked alongside?

I read this thread last night, when up with night feeds, and there were more ideas I liked - will have a hunt when I have a minute - need to rescue ds as he has got himself stuck again!

how about.......don't DIS-ability !!

zzzzz Fri 01-Feb-13 11:27:12

I liked "don't dis me" too, though its a little uncomfortably yooof to slip naturally from my tongue.

I'm surprised at other posters thinking that it should be "about people with all kinds of disability", that "we should let children with disabilities talk for themselves" or that "it shouldn't just be about under 18s".......because I haven't seen anyone suggest that we were discussing a subgroup of sn.

I don't see why we are doomed to end up quibbling about who has it worse.

it already has been zzzzz further up the thread, those with visible disabilities seem to have an easier deal than those with invisible hmm

threesocksmorgan Fri 01-Feb-13 11:30:04

who said it shouldn't be about under 18's ?
not me, I just was trying to point out that I didn't think it should just be about children.

what about the group who have both so don't adhere to the norm of the visible?

troutsprout Fri 01-Feb-13 11:30:47

<< frees hands from between butt and chair>>
Can we please not compare to race campaigns... Or use race to up our cause. I can't see how that helps us.... That one-up-manship.
The thing is some people still do use nigger a lot. I was called nigger on the street randomly from a moving car just recently.
That "would you use the word nigger? " ... Kinda offends if you have recently been on the receiving end of that word . Yes is the answer ... Some would and do.
Ill shut up now.. Coz this isn't about that...

zzzzz Fri 01-Feb-13 11:37:20

But threesocks as far as I know no one said we were talking about under 18s at all.
I certainly was talking about all people with disability, physical, neurological, social, emotional....both born and made, and dependent and independent.

Sometimes I draw from my own experience, so I will in that instance be more focused.

One comment or even 50 highlighting that a particular type of disability should be recognised does not doom us to excluding anyone.

zzzzz Fri 01-Feb-13 11:39:53

No one should be nervous about talking about this. Terminology is a minefield but you don't actually die if you blunder. How will it change if you don't try?

coff33pot Fri 01-Feb-13 11:41:34

Not read everyones ideas yet but how about something like "Living together in Harmony"

silverfrog Fri 01-Feb-13 11:47:12

what about 'live with us'

it could be blunt and edgy - the 'tolerate us' side of things, for situations where people are judging/tutting.

and it could be about inclusion - the way the majority see it, with inclusion in various sports/hobbies/jobs whatever.

or about helping an individual with whatever they need to get on with life, as best they can.

or even better, 'this is me; live with me' - live life to the full with me, help me do what I want, help me when I need it, encourage others to include me, etc etc.

sc13 Fri 01-Feb-13 11:48:02

I like 'Same. Different. Whatever' (can't remember who suggested it).
I think ideally it should be about people of all ages, and cover all disabilities, because the point, as I understand it, is raising awareness. What unites all of us, across visible and invisible, severe or moderate, conditions, is the fact that our everyday life is made (even more) difficult by the lack of awareness displayed by individuals and institutions. Awareness not so much about specific disabilities, but above all about the fact that a person with a disability is a person.

troutsprout Fri 01-Feb-13 11:58:39

I like 'Same, Different, Whatever ' too

threesocksmorgan Fri 01-Feb-13 11:59:05

New MN campaign around children with special needs

zzzzz
it says children

WilsonFrickett Fri 01-Feb-13 12:00:54

I think it was said upthread that it definitely should not be about cute kids. But this thread is stickied on the SN parents board so will attract comment from a lot of parents. And as a fairly high proportion of posters on that board have DCs with ASD/Social communication like DXs it has perhaps become a little skewed in terms of the experiences we're discussing. But I don't think anyone seriously thinks the campaign should be based on cute kids with ASD.

<holds hands sings kumbaya>

zzzzz Fri 01-Feb-13 12:06:53

blush I read that as in "our children" because we are "mums" (sorry any dads etc) not that they were minors.

I'm sorry I just assumed it meant adult children as well. blush

threesocksmorgan Fri 01-Feb-13 12:11:21

but there is thr problem, it is stickied in the sn childrens topic(didn't know that as don't post there) so people will just think of children.
post 18 is an adult

zzzzz Fri 01-Feb-13 12:14:49

Again I read sn children as including children who are adults. Ahhhhhhhhhh I have been living in a alternate universe for YEARS!

LabelsGalore Fri 01-Feb-13 12:15:29

I think MN thought about children with SN because of the infamous thread. Nothing to say that we can't sway them into talking about children and adults with SN.

I am shock at 20% of children having some sort of SN. Which shows how 'invisible' a lot of the SN are.
Also shock at the very high % of children who have some SN but no formal diagnosis.

I really like the education on the % of people affected and the relationship with your church, your cinema etc...

AmberLeaf Fri 01-Feb-13 12:17:40

I saw it stickied at the top of 'active threads'

I also agree that while focusing on children with this being a parenting site is a starting point, our children will grow into adults with disabilities who will be part of society

I think this must incorperate people with disabilities not just children

Thats what I said earlier, this is a parenting site, so I dont think it is 'off' that children with SN is the focal point.

This is just a discussion about what and how this should be done.

This is the time to make suggestions, not to poo poo the whole thing based on one thread title and one OP from MNHQ.

I agree that it would be good to make it about people with disabilities not just children, now is the time to say that!

LabelsGalore Fri 01-Feb-13 12:19:13

I actually think that talking about SN in general is crucial.

All well to try and support our children so they are 'included' but I would want to avoid the trap of people thinking that as soon as these children become adults, then their SN doesn't matter as much (eg even an adult with AS who is 'fully functional' might needs some simple adaptation to his workplace).

which is a whole different scenario to those who won't be able to function as an adult in adulthood or those who will be residential and almost kept away from the world.

zzzzz Fri 01-Feb-13 12:38:59

Mine will function as an adult with sn. He will still be a man.

MmeLindor Fri 01-Feb-13 12:38:59

Why don't you ask MNHQ to change it then - don't know about it being stickied on Children SN, but it is stickied on Active Convos, whihc is where the non-SN posters are seeing it.

Perhaps it has to be more inclusive, if you want us MNetters without experience of SN to join in.

I am very aware that we are all just one step away from a serious illness or accident - it could be any of us.

HotheadPaisan Fri 01-Feb-13 12:39:02

'Everybody matters' might work.

HotheadPaisan Fri 01-Feb-13 12:39:54

CSIE will have some good info - www.csie.org.uk/inclusion/

disagree Hothead based on the fact my son is being left with no support at home 24/7, I have even told every disabled child matters and it wasn't for them, so yes everybody matters, just not my DS.

MmeLindor Fri 01-Feb-13 12:41:58

Everybody Matters is the name of Mary Robinson's recently released autobiography, Hotheaded. She is using that as campaign slogan for climate change.

zzzzz Fri 01-Feb-13 12:48:54

We should be trying to highlight what people with disabilities bring to the world as well. This view that disability is a drag on everything is infuriating.

AuntStressie Fri 01-Feb-13 12:50:58

I suggested 'Don't dis me' as I thought it would be eye catching and a bit provocative because of the street slang. It may catch the attention of younger people which could only be a good thing as ignorance can start early and it's easier to educate youngsters than older people who may be stuck in their ways.

Another suggestion is 'Square pegs' as that's what disabled people seem to be (my ds is anyway).

silverfrog Fri 01-Feb-13 12:53:46

how about 'Let me help you'

but NOT from an able-bodied person helps a person with disablities angle, but from a 'Let me help you re-think/see it differently/see beyond the disability/etc' pov?

could cover jsut about everything with that.

HotheadPaisan Fri 01-Feb-13 12:54:01

dev, I know that is how it is, and it isn't right. I have had real doubts about inclusive education too when it just seemed to mean comply and it didn't come with any support.

Anyway, it is shit, but here's a chance to make a small ripple and I want to contribute to that so I'll try.

NookAndCranny Fri 01-Feb-13 13:13:01

Firstly, I should apologise for not having actually read through the whole of this thread or the one leading to it.

Wanted to say a huge Well Done and Thanks to lovely MN for taking this up. xxx

I have an ASD DS and an NT DD and seem to have spent years trying to get people to treat them as EQUALS. The laws of our lovely country have moved on a long way from the days of just plain old discrimination to a new language of Equality.

It often helps to go with the comparisons of the Black Rights Movements and how they were portrayed in media and public. There's a well known poem, that you might have read that I always try to remember whenever we come up against this really inhumane treatment by the privileged Norms.

I Too, by Langston Hughes (Sorry rubbish at links but it's there if you search)
(Just replace references to skin tones with disability and you're there.

Agree with everyone that ever said that it's about RIGHTS but would add that it's also about humanity and empathy.

NookAndCranny Fri 01-Feb-13 13:17:39
HeyHoHereWeGo Fri 01-Feb-13 13:23:47

I took this whole thing to mean - lets educate MUMSNET.
If all the people who use mumsnet were a bit more aware of the prevalence of disability, and were a bit more tolerant of what others may need, or be going through, well then the world might be an easier place to be.
I imagined that if we target MUMSNET and bring everyones knowledge up a bit, then maybe we all would benefit.
Maybe there would be some fuss on twitter, maybe some of the media would pick up on it and give it a bit of attention.

So perhaps if we think of that, it might guide us?
Similar to We believe you which linked to rape myths, we could have our general tag line, heading, and then a list of ways in which disability can occur, can effect peoples lives, and maybe some myths: Like if you have a physical disability, you have an intellectual one, that most people claimimg DLA are scroungers, etc etc?

I dont understand why this campaign would make anyone feel excluded?
And even if someone doesn't have the energy or interest, or optimism to take part in the campaign, then surely the rest of us could just keep on, and if the campaign is at all successful then everyone will benefit?

I really like Silverfrog's 'Let me help you!' aimed at helping people include us, children with disabilites, parents of children with disabilities and others etc.

zzzzz Fri 01-Feb-13 14:18:12

HeyHo. One of the things I find quite difficult is "just because I have a physical disability doesn't mean I have a neurological one" because I don't see what's so awful about having a neurological one. It's just a different hurdle. sad it's a commonly expressed thought so please don't feel like I'm attacking you, I just hate it.

Lostonthemoors Fri 01-Feb-13 14:20:30

I also thought children includes adult children

zzzzz Fri 01-Feb-13 14:22:33

I wonder if anyone has ever researched which country/region is the best to be disabled in? As in which age the best life experience. It would be interesting to see which factors really impacted people with disabilities lives.

NookAndCranny Fri 01-Feb-13 14:24:32

I think it is about education too. People tend to think it doesn't affect them or those around them.

Figures quoted recently were (VERY roughly):

Diagnosis ASD affects around 1 in 120 children. But this doesn't include how many siblings and other family members are also affected. Many primary aged children will either be related to or know a child living with a disability.

In Blair's Third Way speech there was lots of emphasis on those living with a disability. He quoted something like 17% of children have a form of disability but this figure is much much higher (think about more than double) in adults.

Therefore, acquired disability. So... (really not trying to be alarmist but factual) a healthy child doesn't necessarily result in a healthy adult. Carers UK report a fast growing population of carers.

This is a subject that was involved in quite recently and used in the context of both social inclusion and welfare costs. (Think tabloid influence together with ConDem policy - Ugghh!).

NookAndCranny Fri 01-Feb-13 14:26:56

So maybe not just a case of "Me Too" but more of a Lottery type "It could be You!"

HeyHoHereWeGo Fri 01-Feb-13 14:41:56

Hi, zzz, that one sprung to mind as it was mentioned up thread. I mean like people shouting at blind people because they must be deaf etc etc
I was just trying to see why some people think a campaign would not include them, just trying to tease out what we mean by "campaign".
If it information on Mumsnet then we can be as broad as we like, because we dont have to think of what would make a good image here, or what would be a good sound bite etc

hazeyjane Fri 01-Feb-13 14:55:01

what about 'live with us', it could be blunt and edgy - the 'tolerate us' side of things, for situations where people are judging/tutting. And it could be about inclusion - the way the majority see it, with inclusion in various sports/hobbies/jobs whatever. Or about helping an individual with whatever they need to get on with life, as best they can. Or even better, 'this is me; live with me' - live life to the full with me.

I like this

SallyBear Fri 01-Feb-13 15:00:17

I always think that people should walk a mile in my dc's shoes to understand their life and the struggles that they will always face.

headlesslambrini Fri 01-Feb-13 15:01:26

Havent read all suggestions as on phone but howabout something like

'All it needs is understanding'

zzzzz Fri 01-Feb-13 15:19:10

I think it would help if people understood what actually is provided to families and people dealing with disability.

I genuinely thought that there were plenty of schools specialist and with shit hot inclusion facilities. I genuinely thought diagnosis was relatively straight forwards and that we pretty much knew how to help. I thought the majority of people were kind and accepting and even welcoming. I thought there were lots of options or adults and we cared for people in an admirable way.

I'd like people to know what it's like, because until they do nothing is going to change.

hazeyjane Fri 01-Feb-13 16:03:52

Yes, zzzzz that is very true. I was very ignorant before having ds, despite my mother having worked with children and adults with learning disabilities, and having volunteered in special schools in the Summer Holidays when I was younger.

Dh said it was like when Dorothy was whisked away by the tornado, discovering that ds had sn, waking up and walking through that door......'Toto, I don't think we're in Kansas any more....'

zzzzz Fri 01-Feb-13 16:09:35

So long as its not Holand <shudders> grin

Ah Holland, my old friend.............grin

Can we PLEASE use an image of a dead tulip, or at least have it in there somewhere!!

hazeyjane Fri 01-Feb-13 16:15:52

I know, I can't stand that poem, and it makes me laugh that actually, ds is in Holland now, or at least his DNA is, because that is where the genetics study is based.

MrsDeVere Fri 01-Feb-13 16:20:03

I hate that sodding poem.

Holland: The Sequel

It gets worse........

SallyBear Fri 01-Feb-13 16:23:12

I hate that poem with a passion. My son's HT told me all about how a parent wrote this lovely poem all about Holland and read it out in assembly. DH and I exchanged glances.....

WilsonFrickett Fri 01-Feb-13 16:27:18

OMFG! That's the campaign right there.

Disability. Get used to it. We aren't in bloody Holland any more.

WilsonFrickett Fri 01-Feb-13 16:27:53

Hell NO! We won't go! (to Holland)

Return from Holland!!!!

LOL

SallyBear Fri 01-Feb-13 16:32:07

Ugh. That was dreadful.

MrsDeVere Fri 01-Feb-13 16:33:13

The psych tried to give me a copy of it when DS was dx with ASD. I did this
hmm

MrsDeVere Fri 01-Feb-13 16:35:51

I don't understand that new poem.
It is very confusing.
I.AM.HOLLAND.

What does that mean?

hazeyjane Fri 01-Feb-13 16:36:25

Jesus, I feel quite nauseous.

WilsonFrickett Fri 01-Feb-13 16:40:14

Or it's like the end of Spartacus MrsDeVere?

'I am Holland.'
'No, I am Holland.'
No, I AM Holland.'

threesocksmorgan Fri 01-Feb-13 16:41:01

I can't help wondering what the people of Holland think about it

I should imagine they hate being the consolation prize for a bunch of people wanting to go to Italy.

PeneloPeePitstop Fri 01-Feb-13 16:53:44

Has anyone seen 'welcome to Beirut'? Much better...

zzzzz Fri 01-Feb-13 16:55:01

I can't help wondering what happens if your plane does get diverted to Holland?

grin

I'm not going to fucking symbolic Holand.

WilsonFrickett Fri 01-Feb-13 16:58:29

My DH got diverted to Iceland once.
It was fine, he stayed in a really nice hotel then went on his way the next morning.

<realises is deviating somewhat from the point of the thread>

zzzzz Fri 01-Feb-13 17:01:50

wilson focus FFS! grin

hazeyjane Fri 01-Feb-13 17:04:12

for one moment I thought you meant the shop, Wilson. I was trying to imagine a 'welcome to Lidl's' version......

'what do you mean Lidl?! I signed up for Waitrose!...'

WilsonFrickett Fri 01-Feb-13 17:06:43

Oh Hazey that's brilliant!
You planned to go to Waitrose
But your bus got diverted to Lidl
It's different there
There's only one brand name
But I am here, for you, in Lidl
Lidl will hold your hand.

OK I am stopping now I promise grin

SallyBear Fri 01-Feb-13 17:11:25

Wilson and Hazey. A perfect collaborative effort. Love it!

hazeyjane Fri 01-Feb-13 17:12:32

I.Am.Lidl

SallyBear Fri 01-Feb-13 17:13:51

gringrin

I'm crying with laughter at I.Am.Lidl

I prefer delivery. I booked an ocado delivery, ASDA turned up with 'almost' what I ordered including most interesting substitutions, but hey, sausages are good when you wanted tampons!!

WilsonFrickett Fri 01-Feb-13 17:18:05

The lights are brighter here
You have to do your own packing.
There is no quinoa.
But you can feed yourself for ever for £5.50
The concept of partners does not exist (but let's face it, you better get used to that, pal)
But there is often bargainous cheese.
And we are here, in Lidl.
I am here too.
I. Am. Lidl.

troutsprout Fri 01-Feb-13 17:18:47

I . Am . Lidl
grin

zzzzz Fri 01-Feb-13 17:19:14

One of the things that's so annoying about the Holland poem ( and if I could bring myself to read it again I'm sure a few more would become apparent wink ) is that the very last thing having a dc with sn is is slow, peaceful, boring and predictable! I have never worked so hard, run so hard to catch up, risked so much, felt such highs and lows. I am not surrounded by gentle reasonable Dutch people. I never know where we are going or if I have taken the right path......it's more like round the world in eighty days, without the kudos.

Oh stop it. STOP IT!

<giggling uncontrollably>

I.Am.Lidl

I'm gonna keep that forever, plus the new poem, to hand to the next person that hands me Holland.

troutsprout Fri 01-Feb-13 17:20:15

Slogan sorted mumsnet grin

WilsonFrickett Fri 01-Feb-13 17:21:35

My work is done.

<grabs hazey for a celebratory can-can>

ThreadPirateFanjoBeard Fri 01-Feb-13 17:34:25

Sorry, haven't had time to read all of the above so ignore if repeating what's already been suggested and discounted. Why not go with the words of Temple Grandin: Different, not less. It's succinct and to the point and would cover all disabilities (although she uses it to refer to Autism). I applaud MN for doing this and will be with you on this. Too many people think it's OK to use vile disablist terminology. For one if I have to see the word 'F**kT*ard' used once more on FB I will scream.

sickofsocalledexperts Fri 01-Feb-13 17:43:55

Different , not less

Fab!

zzzzz Fri 01-Feb-13 17:44:16

"If a child cannot learn in the way we teach, then we must teach in a way he can learn" someone posted this earlier this evening and I think it's brilliant. Could we perhaps work on it. Something like,

If a person can't be free in the society we live in, then we must change that society so he can be free.



Oh and Lidl is not the answer! grin

Change free for included perhaps?

WilsonFrickett Fri 01-Feb-13 17:52:05

He can't change his [name of disability] but you can change your reaction.

thereonthestair Fri 01-Feb-13 17:53:09

No. My ds is not different, any more than he is Dutch, special or less. You see the problem as I see it goes back to the label. Some of us like them, and they do help access etc, but some of us hate them. That much is becoming increasingly clear through the hundreds of posts. There have been idea I like and some is hate. Just like the fact there are some other phrases some love and some hate.

But ds is no different to me than I am to my dh etc. (well actually he is probably more like me than dh is given genetics etc). I think emphasising difference would be a mistake.

thereonthestair Fri 01-Feb-13 17:53:35

I like that wilson

WilsonFrickett Fri 01-Feb-13 17:57:00

I think we need to keep coming back to what it is we want to change. General awareness doesn't do it for me, hence 'you can change your reaction' - putting the action on the non-disabled person. I too am a bit uncomfortable with 'different'. It's too close to 'special'. (Although I do still like 'same. Different. Whatever.)

Coming back to my suggestion of just parents of NT children signing up to just ONE session as a volunteer at a group. Just immersing themselves in amongst the children, and the parents there, should surely raise awareness.

I went to a group when ds was first dx, of children with ASD. DS was almost still a toddler so it was at that point an unknown world. Boy did it open my eyes. It was a bit scary at the time if I'm honest, but it has made me much less afraid now.

sickofsocalledexperts Fri 01-Feb-13 18:12:25

I like the volunteering idea Star. Though the head of my boy's school does say she dreads incoming volunteers, as they actually need as much looking after as the kids. I used to feel the same when I managed a division about student interns!

silverfrog Fri 01-Feb-13 18:15:42

how about, simply, 'Change your reaction'?

ie, if it's a negative one, think about why, and do something about it.

if it's a neutral one, then try to do/say something positive

if it's a positive one, then tell the world.

one small step each time, direct and to the point. it makes no difference what the disability is, nor the label.

sickofsocalledexperts Fri 01-Feb-13 18:16:48

Yes I like that too

yes but again the likes of us are still excluded confused

signandsmile Fri 01-Feb-13 18:18:48

pmsl I am Lidl.... oh yes! grin

Yes, but the volunteering thing isn't really about volunteering. Think of it a bit like when groups and things have a 'bring a grandparent' session. This is more like 'bring someone elses parent' session. And rather than the person actually giving up their time to 'help', they are doing it to 'learn' iyswim.

But we are not part of any group. It's still all about nicely fitting disability boxes, those that are usually too complex and challenging are not as easy to come across as they are usually isolated.

zzzzz Fri 01-Feb-13 18:23:33

dev how?

dev, there is no doubt that any affect of any change will take longer to get to your ds. The more complex and isolated, the 'harder to reach' by definition almost. That doesn't mean that attitudes towards him can be changed through experiencing others with disabilities.

FWIW, my ds doesn't attend any SN groups either because there aren't really any for him, but I would still love for people in general to go and experience some, as it will help change their attitude when they DO come across him, or when they are planning his care when I am gone.

yeah I see that but it still doesn't help the likes of DS who fit a few boxes. The perception of his visible disability is different to what you actually receive, then it's all the added complications that people don't see. For example, his home tutor is an autistic specific teacher, however she is learning all about PDA, DS and his medical and physical disabilities.

what do you mean*zzzzz*?

silverfrog Fri 01-Feb-13 18:31:16

'change your reaction' (or maybe even 'change your expectation' - I remember once on a thread someone said they would probably sigh internally if dd1 sat next to them on a plane, as htey would expect to be in for a tedious journey. actually, she travels well, and enjoys aeroplanes, so they would not be any more affected than if I sat next to them. but they expected to be, and sometimes that expectation can be the trigger for a rough ride) woudl work for you and your ds, dev, wouldn't it?

zzzzz Fri 01-Feb-13 18:31:22

I think you massively underestimate what other parents with dc with sn are going through if you honestly think we all fit neatly into little boxes and have happy flappy support groups to go to. shock

silverfrog Fri 01-Feb-13 18:33:02

I've been where you are, dev.

I was bloody lucky that for us it was (relatively) short lived. I spent 3 years virtual prisoner with dd1. and it nearly killed me (no joke). I know a little of what you are going through, and I hope that you are finally going to get the help you need and deserve.

zzzzz I'm sorry but I feel you parents of SN kiddos massively underestimate the life we have with DS!!

silver DS is fine in the car, can go for hours. He wouldn't step into an airport lol

Thats gobsmacked me shock

What I do imagine is the life I have with my other 3 with special/additional needs.

However when you come across someone like DS you will understand.

Right thats it for me, isolate someone further.

Goodbye.

silverfrog Fri 01-Feb-13 18:43:36

I know, dev, it was a clumsy point to use in that post.

dd1 used to be the same as your ds. didn't do/play with anything, didn't want anything other than me to sing to her (nonstop, all day). wouldn't go anywhere without screaming. lots. she was small, so I could bundle her up for the necessary stuff, but we couldn't always do it - the result in her was too much.

for 3 years we didn't go anywhere or do anything. and I still thank god daily that she came through it. because it was nearly the end of me, and of our marriage.

zzzzz Fri 01-Feb-13 18:45:58

I can't talk for the other parents of children with sn, because we aren't really a homogenous group. I know you find your situation very difficult and it sounds extremely hard. Perhaps it isn't necessary (or even particularly accurate) to imply everyone else has it so much easier.

I have never implied it's easier for others!!

I think you too would find my situation difficult and very isolating.

Defo last post from me, in my defense.

Iteotwawki Fri 01-Feb-13 18:51:04

What about something along the lines of the "That's not my..." series?

That's not my child (picture of wheelchair), it's too cold to cuddle.
That's not my child (picture of something related to different disability), it's too (difficult to <action suggestive of positive childhood image>).

With the idea that the disability, whatever it is, doesn't define the person.

Etc. with "that's my child" and a large picture of kids ranging from NT to disabled either physically, intellectually or whatever, all playing together. And a tagline along the lines of - They can see past their limitations, why can't you?

Hope I haven't offended anyone, I have very limited experience of SN children or adults. Apologies if I have the wrong end of the stick.

zzzzz Fri 01-Feb-13 18:56:21

dev what did you mean by,

zzzzz I'm sorry but I feel you parents of SN kiddos massively underestimate the life we have with DS!!

If it wasn't that we ( ? hmm ) couldn't comprehend how difficult your life was because we were experiencing some sort of sn lite.

hazeyjane Fri 01-Feb-13 19:00:50

dev, it just seems as though everytime someone tries to open a door on this thread, you want to slam it shut. Whenever you post, the unbelievable difficulties you face every single day comes across so powerfully. I think that sometimes you post what lots of people don't want to hear, and I think it is really important that people do hear what you have to say, because you and lots and lots of parents have to do this every day.

Hell I don't know what we have in ds's future, I try not to think too far ahead because I have to deal with what we have here and now, but I do know that anything can happen and the rug can be pulled from under you - in the last 2 weeks we have found out that ds has a hole in his heart, may need oxygen at night, has to have a ct scan and may have something wrong with his immune system.

But I do get the impression from your posts on this thread, that you feel as if everyone else has it easier, and that those of us with 'cute kids' or 'sn kiddos' are living in some sort of halcyon la-la land.

hazeyjane Fri 01-Feb-13 19:09:12

Re the campaign - I like the idea that it is about society bending to fit the person with disabilities, rather than them having to bend to fit into society, IYSWIM.

Just thinking about this bit from KungfuPanda's post, that struck a chord -

'Perhaps something along the lines of "Tolerance is..." with different scenarios, all 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.

And a request to people to "sign up" to an agreement to show that tolerance when it is their time to find themselves irritated/disrupted/whatever by disability.'

ok put it like this.....I see kids who have down syndrome getting support and making progress.

I see kids with ASD getting support and making progress.

I see kids with PDA getting support and making progress.

I see kids who are out of school getting the correct help and the correct school.

I see all the issues that go hand in hand, his heart condition, mobility issues etc etc and how the impact on each other.

I see cinema screenings for ASD and wish he could go.

I hear others say they are isolated, what they don't see is while there kid is in school they have some respite.

I could go on and on.

What I don't see is the support and progress for DS as he is too challenging and complex and basically costs too much.

These are the special needs people who are hidden, it's what I strive for it not to happen to my DS even though it's been threatened a few times.

These are the disabilities who will be forgotton, not discussed, not highlighted on a thread/campaign like this.

I'm sorry you all think the worse of me, it was never my intention, so I will sign off now and walk away from MN altogether, maybe 3 socks is right we don't fit.

ouryve Fri 01-Feb-13 19:21:59

Dev. Please don't try to under-estimate what other parents of children with SN and disabilities have to live. I doubt if anyone is seriously doubting the difficulty of your situation, but it's honestly not meant to be competitive.

My boys hardly fly under the radar, anyhow. DS2 is the 4' 6yo, usually on the end of a safety harness, jumping up and down and squealing. DS1 is the one sitting on the floor, loudly ranting about this being the worst shop/house/town/carpark ever and it needs to be closed down and demolished. ASD isn't always "invisible"

Iteo suggested pics of kids playing together. DS1 doesn't "do" playing together. Not with other children, anyhow. If a picture were to truly represent him, his hair would be uncombed, his clothes on rather crooked, or back to front and he'd be completely alone, with his back to you, possibly using his mp3 player, building something incredible with lego.

I'm not going to take umbrage at the idea of kids with SN and disabilities playing together, though. As parents of kids with SN and disabilities, most of only have experience of our own children. And yes, my children can be incredibly cute, but DS1 telling me I need to die because he's overloaded or has to do something he'd rather not? Really not cute.

FFS I am not under estimating anything, I missed a few things out through my stream of tears I'm sorry>

What I meant to add was we all battle for the support and progress made.

Plus I was talking about those in institiutes, yes it still happens.

Right I now where I belong, bye.

hazeyjane Fri 01-Feb-13 19:25:04

No, don't walk away. You are walking away, no-one is pushing you away.

It is awful that you have no support, that you are so isolated. But I know nothing, ds is only 2.7, we haven't even started on this long journey and I have no idea where it is going to go, or how hard or easy things will be in the future. But I read your posts, and realise just how hard it could be, and how much you must be doing for your ds and to get through each day and that is valuable, it is important.

You are damning the idea of a campaign because you say it will not include you and your ds, but it should include disabilities of all complexities. You say that it will only be about cute sn kiddos (sorry combining your and threesocks descriptions) - which just seems to belittle everyone else's experiences.

determinedma Fri 01-Feb-13 19:41:08

Will the campaign include adults with their own particular special needs? My elderly father has dementia and is incontinent. He carries a urine bottle in a black bag and uses it when he needs it. Sometimes he forgets where he is and tries to use it in public. If he sat down next to your sn child, unzipped and urinated would you see confused old man, or a pervert exposing himself. how tolerant would you be of his special needs?

ouryve Fri 01-Feb-13 19:43:06

No one is telling you where you belong, Dev.

No one has suggested a one size fits all portrayal of disabilities. I have 3 boys with ASD in my life and know 2 adults with aspergers. 5 very different people. I have HMS but don't consider myself disabled (yet), despite living with chronic pain (and being one of those people who takes their time and fumbles everything at the checkout - something I know can be the cause of much intolerance from others). I know people with the same diagnosis who are very disabled by it. I would never presume that their experience is the same as mine.

Others, whether disabled or able-bodied, whether they have SN or not, will never know what that experience is unless we tell them. That's half the point of this campaign, isn't it?

AmberLeaf Fri 01-Feb-13 19:46:43

Why so snippy determindma?

Yes if he sat next to my 'sn child' I would assume he had dementia.

ProtegeMoi Fri 01-Feb-13 19:49:15

Dev - that's not always how it works. My son has ASD, ADHD and GDD. He is not given support, he is not making progress.

He gets worse every day and the people who are supposed to help don't. There isn't enough funding, enough time. It's too late for him, he will never improve, accept this is your life now, are all things I am told when I beg for someone to help him.

His speech therapy has stopped, they say its not working and so they can't continue paying for it, his school doesn't want him anymore they can't cope.

That's the whole point of this campaign, don't judge by diagnosis. You say you see a child with ASD getting support and making progress? Well not all of them, just as not all children with Downs will. Some children have complex multiple disabilities and can't be helped, some children are not even correctly diagnosed and so there is no help offered.

cansu Fri 01-Feb-13 19:50:38

I think tbh we all see kids with various disabilities getting support nd making progress. I would think though that there will be children and young adults in each group who are not making progress who are hidden away. I know that ds is sometime just too bloody autistic to fit into the provision for children with asd. That frustrated and upset me for years. I felt on the outside of provision for what seemed to be normal asd provision FFS. I think having a child with a disability doesn't make you an expert on this. We all have a lot to learn.

2tirednot2fight Fri 01-Feb-13 19:55:42

I really don't get how posts can become so unpleasant and leave folks feeling worse than when they came onto the board.

ouryve Fri 01-Feb-13 19:56:11

As an example of including people with multiple disabilities and health conditions, someone I know on Ravelry recently lost her teenage daughter. Her daughter was severely disabled and incredibly poorly and spent a lot of the past few years in hospice and the past year in a steady decline, health-wise. Pneumonia got the better of her, in the end.

Her family had a quiet funeral, after which they watched her favourite DVDs and ate her favourite soggy chinese curry and chips. Her favourite colour was purple and people all around the world wore as much purple as they could that day, in her memory. I still have the sparkly purple toenails (Even though one of her arms was bent in a tight spasm, to the point where her consultant had considered cutting the tendon to release it, she liked having her nails painted) Our ravatars all wore purple, too.

She was far more than just a very poorly girl in a wheelchair with no opinions, likes or dislikes. That's what we're supposed to be getting at, isn't it?

zzzzz Fri 01-Feb-13 19:57:49

grin well determinedma, my ds would probabley get his out too and say seriously "we need a bush" (lord that sounds bad doesn't it), we have a bit of a public peeing issue.

What would I say? Loud braying voice "boys put your willies away. No peeing here". Possibley I am becoming immune to willy waving.

dev I have no support at all from professionals and HE my son 24/7, though for me that isn't as hard as school was.

zzzzz Fri 01-Feb-13 20:01:06

ourvye yes

AmberLeaf Fri 01-Feb-13 20:02:49

zzzzz I was gonna mention something like that too!

It would be either compare, or recite a lecture about what we do in public and what we only do in private grin

WilsonFrickett Fri 01-Feb-13 20:23:00

Yep, he'd get 'no-one wants to look at that!' in exactly my tone of voice.

Dev I don't really know what to say to you. I'm truly sorry that it is such a struggle for you and your family. But this is a campaign and we have a chance to shape it. It can't be all things to all people but it can (possibly) do some good for all people. Does that make sense?

RollingThunder Fri 01-Feb-13 20:54:55

Firstly, I agree with the poster who said we shouldn't imply that it's easier in a wheelchair, or easier if x, y, z! It's just all fucking hard. (Bad week here too)!

Secondly I am coming at this from a hidden disability point of view. Ds1 has asd!

But I really like the idea of a campaign about not being able judge from appearances! You could do it both ways. I.e. nt appearing child, who has profound difficulties and severly disabled looking child who is achieving amazing things.

Possible tag lines; you can't know! Don't presume! I do like 'this is me!'

Also want to second the point that our children grow up and become adults with SEN, who have even less protection and support, it's definitely about adults too!

bialystockandbloom Fri 01-Feb-13 21:12:56

I haven't read the whole thread yet so it may have moved on, but I really like heyho suggestion of using a kind of deal with it tone.

Something like

'I live with my disability. Can you?'

Or (too confrontational?): 'I live with my disability. Why can't you?'

Anyway will read whole thread now.

HotheadPaisan Fri 01-Feb-13 21:13:50

I like 'change your reaction', good fit with chain reaction too in terms of impetus.

threesocksmorgan Fri 01-Feb-13 21:52:06

reading this thread makes me wonder if it is not just the disabled person that needs a campaign, but carers too.
all very well to high light the acceptance of disability, but to ignore how hard it is to be a carer/parent to a disabled person especially in the current political climate.
reading devientenigma's posts high light to me how hard it is when every avenue is closed to you, when how ever hard you try, nothing works.
this is going to be the future for a lot of carers, they need help.
I am reluctant to be part of a campaign that just settles on one issue and will not in the long term really help.
devientenigma I do hope you continue to post, I think people need to know the reality of life for a lot of people with a child with sn

hazeyjane Fri 01-Feb-13 22:02:27

On the other hand I think there could be a danger of a campaign trying to be too wide ranging, and losing any focus of what it is trying to achieve.

It seems a shame to say a campaign is going to fail to achieve anything, before anyone had even decided what the aims of the campaign are going to be!

PolterGoose Fri 01-Feb-13 22:38:31

I agree with hazeyjane if the campaign is too broad it will become meaningless. There needs to be a reasonably tight focus to mean something to those it is aimed at. To cover the full range of disabilities, plus all ages, plus parents/carers is just too huge. I like the idea of focusing on children but that may be selfishly because my ds has disabilities. I'd like a campaign that can be understood by children and young people.

It needs to be specific. It needs to both enlighten people and show how they can make a difference to other people's lives. It needs to bust myths. Just like the rape campaign. Myths like a wheelchair user must be stupid or having a learning disability means you'll never have a job or having ADHD means you're naughty or having an ASD means you have no imagination.

It has to make the point kungfu so eloquently made about people ceding a little of their comfort to enable a person with a disability to enjoy the real world.

threesocksmorgan Fri 01-Feb-13 22:46:14

so you want a campaign for children with sn?

BeeMom Fri 01-Feb-13 22:50:39

Apparently this thread has become heated - I think the idea of a campaign is brilliant, but agree wholeheartedly with hazey that too broad a campaign waters down the message.

The only campaigns that totally fail are those that are dismissed before they get off the ground... BUT carer stress and burnout is an exceptionally important topic and deserves recognition. We fight with all we have for our LOs, and often, at the end of the day there is nothing left for us to give ourselves... when that spirals out of control, the outcome is unpleasant at the best of times... and at the worst, it is tragic sad

OliviaMumsnet (MNHQ) Fri 01-Feb-13 23:01:31

BeeMom

Apparently this thread has become heated (

We certainly wouldn't want to upset anyone, that's really not what we're about.

threesocksmorgan Fri 01-Feb-13 23:12:27

I would just like it clarified if this is going to be a campaign based on children with sn.
if so I can say good luck and walk away

AmberLeaf Fri 01-Feb-13 23:15:40

That wasn't the impression I got from the OP threesocks.

zzzzz Fri 01-Feb-13 23:19:27

I think we're still discussing what it should be about threesocks. What would you like it o be about?

BeeMom Fri 01-Feb-13 23:20:35

Threesocks (please forgive me if I am incorrect and it has different headings elsewhere) but the title of the thread in the SN section is "New MN campaign around children with special needs"

That seems kind of clear... I think. confused

threesocksmorgan Fri 01-Feb-13 23:22:01

thanks. will stop wasting my time then, my dd is nearly 18 so i am well aware that disability is for life.

AmberLeaf Fri 01-Feb-13 23:22:48

kungfupandas quote in the OP says 'children with severe disabilities'

But yes as zzzzz says, arent we still discussing what it should be about?

AmberLeaf Fri 01-Feb-13 23:23:52

I think we are all well aware of that threesocks.

threesocksmorgan Fri 01-Feb-13 23:27:30

AmberLeaf thanks for that.
I won't waste your time any more. just please remember that one day you will be at the 18 plus stage.

'children with severe disabilities' hmm provided your a nodding dog, not too isolated, don't have too much of a combination of disabilities, especially not a mix of physical, neurological and medical, have some fight, a little support, with progress or not.

Sorry got drawn in again but kids like DS will still be hidden and not known about. Hospitalized, institutionalized. Hidden away. Why do I not have a friend online or in RL with similar situations/issues to bounce off? Why do I not find total support on forums of all different kinds? Because they and there families are just as isolated.

Defo last post from me (again) I feel the need to fight this subgroup (which that is what it seems to now be)

AmberLeaf Fri 01-Feb-13 23:39:45

Oh FFS threesocks.

I think my last post indicates that I know that one day I will be at the post 18 stage.

You're not wasting my time in the slightest.

threesocksmorgan Fri 01-Feb-13 23:40:04

devientenigma we might not walk the same walk, but you always have my support

zzzzz Fri 01-Feb-13 23:41:26

Jumping back a little I think stars suggestion that

"If a person can't be free in the society we live in, then we must change that society so he can be free."

Reads better as inclusion not freedom,
If I can't be included in the society we live in, then we must change that society so I can be included.
Perhaps society could morph into school, church, pub, cinema, friendship?

I don't know. I keep asking myself what change/shift would help ds when he is older.

I'd like to give people the vocabulary to talk about disability with more confidence.

I'd like to give people a better understanding of
the diagnostic process,

the true cost of disability and the help that is available (ie the reality of having a child who can't say mama at 3 who gets no SALT),

what educational opportunities there really are for children with sn,

what options are available for our children as they hit adult services

I'd like people to know the names of their local special schools and what happens to the kids when they leave.

I'd like to empower people to challenge poor treatment of people with sn and ask at clubs and businesses and schools why there are no people with sn there

I want people to know how huge the problem is.

threesocksmorgan Fri 01-Feb-13 23:43:26

AmberLeaf sorry I must have misread, thanks

AmberLeaf Fri 01-Feb-13 23:49:13

No problem threesocks flowers & wine

We are all coming at this from a different perspective, but we all experience the problems that this campaign is meant to help challenge.

We need to unite, not divide into sub categories of which type of disability etc.

We all feel pain.

threesocksmorgan Fri 01-Feb-13 23:50:33

I will walk away from this now, I don't have a "child" with sn. I have a adult with sn(well will be very soon yikes)

Whereas for me on top of what zzzzz says with the exception of a 3 year old not getting salt, here it was 7 and not getting salt

How my DS can't access much including special school, making the prognosis for him a lifetime of residential with limited access to home, parents and siblings.

How I'm doing the best to give him by myself the support he needs in order to keep him out of the situation some of the profs would of already had him^^

How I worry when I will lose him, whether that be medically or ^^

bialystockandbloom Fri 01-Feb-13 23:52:33

I had the impression from most of this thread that (regardless of the thread title) most people wanted a campaign to be about 'people' not just children. I certainly would. We all have dc of varying ages from tiny to (almost) adult and I'm sure those with younger dc have looked realised that a disability is usually for life!

Although generally MN is used as a parenting forum overall so the majority of topics and threads are about our children, I took the basic idea of the campaign to suggest doing something about challenging society's attitudes towards disability and disabled people not just children. Not sure why this has become such an issue.

WilsonFrickett Fri 01-Feb-13 23:54:34

I'm startung to find this thread very difficult. I have a 7 yo with a disability. I am well aware that he won't be 7 for ever. But at the moment he is 7 and that is my experience and all I can speak to.

Yes, the original title of this thread references children. But many, many posters have suggested it should have a wider focus, including me. This thread isn't the campaign. It's ideas about a campaign. Can't we all just post in a positive spirit?

Apologies for those who aimed comments at me and I haven't picked up on them. TBH this whole thread has my head banging, I should walk but can't. DS has been kicking off all night and is just about ready to go upstairs. Iv'e had a shit but good week even if it was alone with DS to entertain and converse with hmm

TBF I was sick of my words being twisted by people who should understand at least some of my situ, then getting the slating. Bit if thats what support looks like its not needed.

As for my positive, DS is with me, not locked away in some institute.

zzzzz Sat 02-Feb-13 00:28:36

I'd like people to know that the TA whose funding took long humiliating months to get, is paid a minimum wage, has little or no training in sn, and no power to help, is likely to spend a portion of my child's school day sitting babysitting him in the corridor so the rest of the class can be taught without the teacher having to differentiate her lesson.

MerryCouthyMows Sat 02-Feb-13 08:05:07

I went to a sensory needs group yesterday, and got chatting to a new lady there with her DS. We were explaining to each other a bit of our 'histories'.

When she found out that my Ex (DS2 & DS3's dad) had been dxd with Autism and attended SN school, she started to cry. I was a bit taken aback until she explained that it gave her hope for the future, because she had been told by her relatives that he would never have a 'normal' life, and to realise that my Ex had had a relationship, and two DC's that he is very involved with, made her realise that her DS's diagnosis didn't mean that he would definitely never have DC's or a relationship, that he was still her DS, and he could do everyday things, with a little adjustment.

I agree that 'acceptance' or 'tolerance' aren't the right words. I don't want my DC's to be just tolerated, I want them to be TRULY included in everyday life, not just people giving lip service to inclusion.

This is me / This is my child sounds like a good idea.

MerryCouthyMows Sat 02-Feb-13 08:10:39

I think if the disabilities needed to be included with photos, it could be a little addition at the end.

Like this :

I'm CouthyMow's Dbro. I am in my final year of Uni, studying Environmental Sciences. I like playing computer games, reading textbooks, debating and eating pizza. I enjoy spending time with my Niece and Nephews. I chat a lot on fb too. Oh, I also have Aspergers and Hypermobility Syndrome. Nearly forgot to say that...

MerryCouthyMows Sat 02-Feb-13 08:16:54

I LOVE 'More than my disability'.

That is an awesome suggestion.

I AM more than my disability. I am a mum of 4, I love Formula One, Music, Cross stitching, card making, MN'ing and cooking. I just happen to have Epilepsy, Fibro and RA. It's only one part of me.

MerryCouthyMows Sat 02-Feb-13 09:05:43

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

MerryCouthyMows Sat 02-Feb-13 09:13:37

And now I'm off to shove my first 2 epilepsy pills of the day down my neck, along with 2 cocodamol and 2 ibuprofen. I also have to give my DS2 his nebs, and his Movivol, and give my DD her antibiotics as she has a cardio problem and needs a filling, but can't have it done without preventative AB's.

Oh, and I have to give DS3 his first dose of antihistamine, and do 4 rounds of Physio, one for DD, one for DS2, one for DS3, and one for myself.

And not forgetting that I need to help explain 10yo DS1's extension work to him, as the school just hand him a worksheet meant for Y10, with no explanations. That's HIS differentiation. hmm

MerryCouthyMows Sat 02-Feb-13 09:15:17

And why the Jeff does the [ hmm ] emoticon come up as a sad face on the App? I hope it comes across as a raised eyebrow on the main and mobile sites.

zzzzz Sat 02-Feb-13 09:22:01

I don't like "more than my disability" simply because it puts the disability first.
The more I think about it the less I like Tolerence too.

Perhaps it would help if we could link how big a part of society we are with something known and if possible non threatening/run of the mill. Something like you are as likely to be disabled as work for the Nhs, or have curly hair, or have more than 2 gcse's?

Would it help to explain just how much money is made by people with sn?

Would pointing out that how you treat your most vulnerable citizens is a reflection of how civilised you are? That it wouldn't hurt to be a world leader in this?

sickofsocalledexperts Sat 02-Feb-13 09:33:19

Mnhq - please don't get put off doing the campaign because of some heatedness on this thread. Raising awareness or tolerance or acceptance or embracingness of all disabilities can only be a good thing. Plus, in my previous career in marketing, I was always taught that drafting by committee is hopeless.

Disability awareness training is not effective as it can't cover everything, all scenarios and issues. There will always be a gap. Some of the comments on here by people who think they are aware proves that.

HeyHoHereWeGo Sat 02-Feb-13 09:38:36

Yes I think MNHQ could do with steering this thread a touch.
What do they have in mind for the campaign. Its hardly nationwide billboards is it?
So if its here, on MN, we can have it as inclusive as possible. We can all chip in.
I still like the attention grabbing This is Me, but we can put as much "Did you know" as we like - did you know how little carers get, how little support there can be, that people get shouted in the streets, that people give our children dirty looks if they shout out in the cafe/cinema, that is as much a crime to be disablist as it is to be racist etc etc

Strongecoffeeismydrug Sat 02-Feb-13 09:39:11

Well after reading all this thread I'm liking the short shape to the point
" united not divided "
Just think if it can cause us to all divide and we are all facing similar problems it's not looking good in changing ingrained opinions on people who have never been touched by disability.

dottyspotty2 Sat 02-Feb-13 09:55:37

MerryCouthyMows I'm in a similar position to threesocks my DS is 18 and why not do it about all ages of disabilities as it will include all our children whatever age they may be child or adult. As in the end all our children will be included that way.

How about something like this
People with disabilities ROCK! "Each are different ... expect it, respect it, and accept it!"

zzzzz Sat 02-Feb-13 09:57:10

dev and threesocks MCMs 09:05:43 post this morning seems very well put. I'd like to try and improve understanding for my children, future carers and all people with disabilities. I understand it is an up hill battle, funnily enough I have quite a lot of experience of up hill battles.

I don't have much experience of threesocks as I haven't seen her around much, but dev you have long been one of the posters I look out for on the boards. I don't want to upset either one of you, but my children are not a walk in the park and their futures are of real concern to me now and to suggest otherwise is utterly offensive. Try saying what you would like to see in the campaign, instead of putting down everyone else's ideas.

zzzzz Sat 02-Feb-13 09:58:24

Oooh I like expect, accept, respect. grin

PolterGoose Sat 02-Feb-13 10:15:36

Well said Couthy and zzzzz

I really like those 3 words together too:

Accept - to me it's about we're here, accept me as who I am

Respect - encompasses acknowledgment and understanding and empathy

Expect - covers expectations in services, but more importantly saying don't write off a person because they have a disability, expect more and aim high, disability should not be a hindrance to ambition

without sounding negative, looking like I'm turning the thread or anything else nasty used to me previously, I am just being realistic IME

DS and kids like him are already written off, they cost too much money and lack accountability. There is no respect or expectation and they certainly don't accept.

However I am now resigned to the fact that this will be the case for him and others like him, still hidden away from the world. This is why I have had to have my say. However your right, keep it in the majority. We have no place.

notcitrus Sat 02-Feb-13 10:36:18

I've only read about half this thread, but if we're trying to get adults to change their behaviour, maybe something a bit like the campaign for behaving on London buses (cartoon people of all ages etc saying 'I wont put my feet on the seat' 'and I'll offer my seat to someone who needs it more than me' etc).

So you could have posters etc with someone saying "I don't store cleaning materials in my accessible toilet because then people who need it won't be able to get to the loo", caption Mr X, restaurant owner.
Or "Some customers last week were taking the mickey out of some children at another table, just because they were making a few unusual noises. I told the adults to leave - I'm not having nasty people like that in my cafe"
Or "My colleague has $syndrome. My aunt's brother-in-law's cousin's daughter had that but I don't assume that I know anything about it. I ask my colleague if there's anything I need to do so she can do her job and socialise with the rest of us"
Or a teacher saying "inclusion isn't just about having children in the classroom together, it's about ensuring none of them are bullied or left out, even the ones who are a bit different" (needs some stronger wording)

Or what about a bunch of people with disabilities relating some of the crap they receive from other people, and a caption "We're human. Are you?"

AmberLeaf Sat 02-Feb-13 10:39:37

I like that notcitrus, the examples of what people can do everyday to make things easier for everyone.

zzzzz Sat 02-Feb-13 10:55:23

I like it too. Modelling behaviour makes it much easier to use. <eyes ds>

I wonder what the ABAers would suggest, after all it's their kind of thing just on a slightly larger scale.

HeyHoHereWeGo Sat 02-Feb-13 12:19:43

dev,
please stop giving out to us and telling us that we are excluding you.
Please tell us what you would like to this campaign to be?
You are involved in this thread, though you keep walking away from it you keep coming back.
So please tell us what you would like to see?

LadyMaryQuiteContrary Sat 02-Feb-13 12:25:47

I have a disabled child. He has sensory problems and hyoptonia in his ankles. I'd like people to stop assuming that he's rude if he covers his ears when a baby close by starts to cry, he finds it incredibly painful. I'd also like to ask people to move out of the disabled seats when on public transport if they are asked to. It's hard to ask and I do feel uncomfortable but it's harder when they stare at me as though I have two heads and have just told them to fuck off. My son can't stand; it means the difference between him spending all day at school in pain and then needing to take the following day off school because he's exhausted, and him being well.

This isn't an issue about tolerance, no one should 'tolerate' someone else's differences. Understanding is better. smile

HotheadPaisan Sat 02-Feb-13 13:21:52

We are a million miles away from the kind of support needed by some but we have to start somewhere. This is likely to be an awareness/ support/ myth-debunking thread similar to the We Believe You campaign which ran for a week or two I think but the information remains and the impact was good.

So, what information do we want out there? If you are lucky enough to get respite it's often for two hours a week. Two hours help, a week, when you are dealing with severe sleep and behavioural problems 24/7.

HotheadPaisan Sat 02-Feb-13 13:24:09

Campaign, not thread. The stats on exclusions are very sobering, ditto for work opportunities and poverty.

HotheadPaisan Sat 02-Feb-13 13:27:51

Involve, include, enable maybe.

SallyBear Sat 02-Feb-13 13:31:30

Understanding. That works for me.

LadyMaryQuiteContrary Sat 02-Feb-13 13:44:38

It would help if the Government stopped demonising disabled people as a whole (adults and children). Benefits help people to work and to live day to day. It's going to take a lot of work and a lot of campaigning to alter the public's perception of SN and disability and it's incredibly depressing that MN needs to campaign for understanding in the first place. sad

Haven't read all the thread but just want to add my support, even though I don't have anything to contribute.

ouryve Sat 02-Feb-13 14:47:38

This twitter campaign from earlier this week, illustrates what we're all up against, pretty neatly. Most of the participants are adults who are able to communicate. This is what people who can speak up for themselves are experiencing.
https://twitter.com/search?q=%23heardwhiledisabled&src=typd

BeeMom Sat 02-Feb-13 14:48:44

Paisan I really like involve and include, but "enable" has taken on a really negative tone within the mental health field (to enable is to do something for someone else that they are capable of doing for themselves... often as a method to maintain control over that person).

LadyMary I agree wholeheartedly. Sadly, there are those who will always seek to demonise the difference and begrudge the support required to allow individuals with disabilities to contribute to society. These people are the same ones who refuse to acknowledge the reality that in the blink of an eye, they can go from one side of the "disability" fence to the other. While I have always been active in advocacy for individuals with a disability, as a young adult, I never would have believed that I could actually be one myself (and then subsequently be a mom to 2 children with SN/disabilities, as well). However, I went from competitive athlete and emergency services worker to person with a disability in about a second. During martial arts training, my partner lost his balance and fell on top of me, dislocating my spine and crushing my spinal cord.

It can quite literally be anyone.

LadyMaryQuiteContrary Sat 02-Feb-13 14:57:42

It can, Bee. I was diagnosed with MS two and a half years ago. If I am lucky enough to get a seat on the bus I will give it to my son. I also use my DLA to get him to school because they decided that he didn't qualify because 'he can actually walk'. The pain factor was irrelevant. sad Things do change in people's lives, it just takes a second. No one asks to be disabled and no one asks to have a disabled child. A little understanding is all it takes but it can be hard to see past the end of one's nose sometimes.

moosemama Sat 02-Feb-13 14:58:40

I think the first step is to identify the core purpose of the campaign.

From scanning this thread:

Some people want to raise awareness of the very real problems caused by lack of meaningful support, erosion of rights, reduction/removal of resource and funding etc.

Others want it to be an about raising awareness that people with diabilities are exactly that, people who happen to have one or more disabilities, but are living, breathing, flesh and blood human beings who deserve no less acceptance/equality/understanding than every other living being on this planet.

Some want it to be focus on children who have disabilities, others would prefer to include people of all ages.

For me personally, obviously I would love people to start seeing past the negative propaganda and daily mail type sensationalisation (is that a word?) of disability and the issues that surround it. For them to really listen, see and understand how hard the reality is, not only for the person who has the/a disability, but also for their families and carers - BUT - I think that is a tall order and will only come from a starting point, where people truly accept disability of a fact of life and not something to be marginalised, feared or hated.

Perhaps we should see this not as '^the^' campaign, but as a potential starting point. We could start with something along the lines of the 'we/I am/are here/this is me/us' with the aim of getting people to just stop and think, challenge their own and each others' perceptions of disability and hopefully start to change their attitudes.

Not sure if MNHQ would be up for it, but could we not see it as the drop of ice that starts the snowball? Aiming to build a layer each time, developing the point and raising awareness of the wider issues and how prejudice and discrimination is allowing the rights of people with disabilities to be at best eroded - at worst completely trampled over and destroyed.

In my experience, campaigns from organisations, such as, for example MENCAP, whose role is purely to support people with disabilities, are easy for people to gloss over and ignore, they are fringe, marginal, just like the people they are trying to represent. MN however is a powerful and wide reaching engine, which really can make a difference, by getting people who would normally walk past a billboard or make a cup of tea while the advert is on tv to actually sit up an take notice.

I could be rambling complete nonsense here, as I am not doing too well at the moment with my own, as yet undx, hidden disabilities, but what I can see from reading this thread is that we all want and need a voice, we all care passionately about the fact that people with disabilities need a public face and voice that is real and for want of a better word - normalised (not phrased that well, but I hope you know what I mean) in order for people who wouldn't ordinarily bother to actually stop, listen and think. Yes we have different ideas about what the campaign could mean to us personally, but surely that's something we can work out together?

We need a plan and and understanding of how far the campaign can go - whether it's just going to be a short one-off thing - or if it has the potential to go further and champion some of the very real, serious and scary things that are currently happening in relation to disability in the current climate.

sickofsocalledexperts Sat 02-Feb-13 15:02:08

You speak a lot of sense Moose - v good summary of a hectic thread, and I agree that this campaign can only be a first step, not the whole journey

BeeMom Sat 02-Feb-13 15:43:10

Yep. What sick said.

zzzzz Sat 02-Feb-13 16:03:44

moose brilliantly put.

I've been wondering if asking mnetters to answer an anonymous questionnaire on their understanding of say, what DLA is for, what ASD is, who can park in a disabled spot, what sensory issues are, what happens to the kids at school with disabilities once they leave school, why is it upsetting to be called the disabled kid, etc then addressing the issues most misunderstood, then running it again after a bit. I think if you could give people a score at the end some would be shocked at how little they understand. I also think thinking through the quiz questions could be educational in itself.

LadyMaryQuiteContrary Sat 02-Feb-13 16:16:03

That's a very good idea, zzzzz.

You make perfect sense, Moose. smile

hazeyjane Sat 02-Feb-13 16:34:41

Nicely summed up Moose.

I think that would be a good idea zzzzz. Maybe everybody could come up with a different question, that way it would cover everyone's varied experiences.

ouryve Sat 02-Feb-13 16:53:30

Applauding Moose for summing things up so eloquently thanks

ouryve Sat 02-Feb-13 16:57:51

And that's a great idea zzzzz. I suspect that people are far more motivated to try a survey or quiz than to read some prose which might simply them feel lectured to. They can challenge pre-conceptions in a non-confrontational way.

moosemama Sat 02-Feb-13 16:59:05

blush

Good idea zzzzz. Great way of highlighting misconceptions and myths surrounding disability.

As you say, completing the questionnaire itself would be a thinking/learning/educational process for many and we could use the results of the questionnaire to decide where to take the campaign next.

JakeBullet Sat 02-Feb-13 17:46:41

I am late to this thread however, here's my thoughts.

I would like to see an MN campaign which focuses on disabilities of all ages. Many contributors to MN are either mothers themselves with disabilities or parents of adult children with disabilities. This matters because we need much more awareness around the issue that children grow up....and children who have very difficult needs will become adults with very difficult needs.

The fact that there is little out there to support families who are caring for someone (adult or child) with a disability is a disgrace and the reason we have places like Winterborne View. Why oh why do we have places like this when we closed hospitals down in the 80s having deemed them unfit places to care for people who have physical and/or learning disabilities?

Likewise young people with disabilities still have a place in society and the right to integrate as far as they can and want to....pretending they don't exist does not serve them well.

I am all in favour if this campaign but lets make it inclusive of all people and families and all ages with disabilities. Lets focus on the fact that disability can be very isolating for people.

ouryve Sat 02-Feb-13 18:32:31

I wonder if MumsnetHQ could persuade a high profile business - not a disability charity - to support the campaign and maybe sponsor a prize for the initial survey?

moosemama Sat 02-Feb-13 18:38:16

Good idea ouryve, I was wondering how we could encourage people to click on and complete the questionnaire.

We could do with a high profile business that's highly inclusive/equal opps orientated and happy to employ people who have disabilities.

Do any exist though?

determinedma Sat 02-Feb-13 18:47:57

A very well written and eloquent piece in the much hated Daily Mail today,on the struggles facing a family with a child with special needs.

PeneloPeePitstop Sat 02-Feb-13 18:54:17

Remploy would have been perfect.

* ahem *

I certainly wouldn't ask AToS "sponsors of the Paralympics".

I contributed to #HeardWhilstDisabled. My contribution was
"If your family were racehorses you'd all be shot"

(Courtesy of NHS consultant that one)

MadameSin Sat 02-Feb-13 19:51:10

Words that spring to my mind are: Embrace, deserve and progress. However, I truly believe that real tolerance is not always born from awareness, but personal experience.

TheLightPassenger Sat 02-Feb-13 20:29:05

[shocked] by the tone of some of the posts towards 3socks. Apols if this is a dreadful analogy, but in a way I imagine going through the transition to adult services/leaving school etc must be as stressful as dealing with the pre-school/pre-diagnosis days in many ways, so of course its going to be v prominent to a poster in this position.

Regards the campaign, personally I would like to see something that includes as many groups as possible - including adults with SN, older people, carers, but it's going to be hard to get focus. I suppose my ideal would be for there to be 2 strands for this campaign - hard and soft - so maybe some sort of fact sheet - top ten myths maybe? as starting point, with hard facts and figures re:disabled people and their carers, and the softer, more awareness raising strand re:equality/respect etc.

Isabeller Sat 02-Feb-13 20:36:43

what a great idea for a campaign

'Lets all learn to play nicely'

I would just like to say this thread has upset me so much. It has left me even more isolated and less supported than ever. If you read back through the thread you will find I have done lots of nodding, agreeing, highlighting as well as defending and making people aware of those who are 'barely seen'. You will find a few have twisted my words in a competitive way and others have joined in.

I have never underestimated what parents of disabled kids go through. I have never made this competitive and I have certainly never tried to shut the door on the whole campaign.

This is the last post from me, however I will lurk from time to time just to make sure I'm not getting another slating, if I am I will be reporting it MNHQ.

So I will be off now to battle my night into the early hours with my disabled son, who has numerous medical, neurological and physical disabilities. A 12 year old who is very much delayed and on par with a 3/4 year old. Who fights like I have done 10 rounds with a handful of professional boxers, thanks god DH has a black belt in Karate. There is many times in our life I feel like just driving my car with DS and I in and parking in a lake. This is due to the lack of support from family, friends, professionals. DS has always been special school until the last 3 year where he now can not leave the house or his car. All I have to socialize is the laptop but thats now gone. DS has been disabled from birth and it's been a hard slog from day 1 due to the nature of his disabilities.

However I don't know why I'm justifying myself here, after all what do I know about having kids with SN.

Hope the campaign goes well but hopefully you will remember that not all will be highlighted and the awareness not a true picture of severe disability.

I wish you all well for the future x

Leithlurker Sat 02-Feb-13 21:04:24

Ok only just got here and not had the time to read the entire thread, but I have skimmed and think I have the gist of what people are saying.

First of all let me do a quick introduction. I am 49 year old disabled from birth male. I went to a special school, been employed, got married, have a rare genetic disorder that is getting worse, I have a visible (in other words other people can tell I am "Not the same as them") disability, I am a graduate of a top class university as a mature student, I have spent 20 years as a disability activist.

All the above is not to claim special knowledge or that "I" know stuff, or that my voice is any stronger than any one elses. I said it to indicate that I have some knowledge and experience that I think could be useful.

Firstly yes to a campaign, all people with any type of imapirements (That is the technically correct term.) are feeling very isolated and got at not just by the government but by society at large. This is evidenced by the huge rise in reports of hate crime.

What I want to say is that we must not forget that there is no such thing as a homogeneous group called the disabled exists. This makes a general campaign problematic and can from evidence of the past only further divide different parts of a very disparate community. Did you know that deaf people and some people with mental health problems do not accept that they have an impairment at all? They would reject and be scornful of any campaign that tried to lump them with people they think they have no connection with.

Like wise although individual impaired people and their families may appear to have the same common goals, the reality is that they can be entirely different and want completely different things. Indeed government policy to put more care of relatives at the door of the family will mean that the strides for independence and being able to make decisions will be reduced. Carers and individual impaired people do not want or need the same things, they can and do share many goals but it should not be taken for granted that they should or will support each other.

I am also wary of any campaign that seeks to want to miss the opportunity not to address the fundamental understanding that most socially and politicly aware impaired people have and that is the social model of disability. Not every impaired person supports this theory but it is a marker that all user lead groups look for in their partners to satisfy themselves that others have a basic understanding of the way that society is at the root of the problem not the individual or the characteristics of any given impairment. It is the same as saying that feminism is a way to view the world.

I am not saying that all of the above should derail or stop the idea of a campaign, I am pointing out some pitfall to be avoided that's all. It would have been good to say at this stage the solution would be to partner up with a well known Charity and so avoid a lot of the pitfalls. Unfortunately there lies another pitfall. It is a huge source of frustration and nekkid anger that most of the big charities have accepted money from the government to be involved in things like work fare, or in training programmes, which a large part of the activist movement are criticle of as these charities have put their own financial needs a head of standing up for the people they say they represent. Similarly some of the leading disability charities have vast amounts of income, and huge financial reserves, yet they cut services and employ the worst elements of capitalism like low payee staff and using methods like chugging to raise money which to be honest is an embarrassment to many impaired people. Last but not least, these organisations are mostly run at the top level by able bodied people and always have been, they there for are not representative or indeed democratic.

So I would suggest the full weight of MN be used very simply but most effectively with a very simple message that encourages repsect, and inclusion for all. Calling on those that are not in a minority of any kind to firstly accept that it is they who need to examine their attitudes, and then also call on the government to take the lead in promoting equality of outcome for all. This will challenge their targeting of all the poor for cuts as well as sending a clear message that our society is for everyone equally and that will include a duty on everyone to be less judgy and offensive. Sorry for the essay folks but I hope you see why I thought it important to give some context from the other side of the fence as it were.

moosemama Sat 02-Feb-13 21:16:04

Oh Dev, but that's precisely why I said it needs to be more than just a basic awareness campaign. We need to grab people's attention, make sure they are listening and them tell it how it is - for everyone.

I honestly do not want anyone to be missed out, we need to make sure people are aware of the truth about disability, from those of us who are relatively mildly affected through to people like yourself and your ds, who are totally isolated and marginalised to the extent that you become invisible to those who find it easier not to notice. We need to make sure that people do notice - and care, even if they can't understand all the complexities of every situation.

If you disappear from MN there's even less chance of you being represented and heard. If you stay, you have so much to offer in terms of helping us - and the people this campaign is aimed at - to understand. Imho, that's how change starts, the more people we reach, the more minds we open and change the wider it spreads. For every Mnetter that learns something about disability, there will be at least one child who is brought up with greater understanding and a better attitude towards those of us who are different and so it goes on. Viral marketing with a positive purpose for once.

I for one hear your despair and my heart breaks for you and your family, but that's not enough - I know it isn't. It would be incredibly arrogant and stupid of me and I would be lying if I said I completely understand. How could I, unless I have walked a mile in your shoes? BUT that's what we need to change, we need to find a way of communicating the harsh reality to people who truly have no idea - and without campaigns like this, many of those people have no reason to and every excuse not to even try.

I hope you don't leave, because I think the board will be very much worse off without your presence, but if you really feel we are so far removed from and unable to understand your experience of life and that without living your life, we can't offer any help or understanding then I understand why you feel the need to go.

Take care Dev. x

TheLightPassenger Sat 02-Feb-13 21:29:26

Excellent posts from Moose and LeithLurker.

I don't know what to say dev - don't want to leave your pain unacknowledged, it seems ironic that this thread seems to have left you feeling more isolated.

Leithlurker Sat 02-Feb-13 21:30:52

A much shorter post this time, it is to say that I would not make this about kids with sn as it misses the point entirely of how the view of disabled people changes both with age from cute unproblematic children, to scrounging lazy bastard adults who are disbelieved and made to feel worse about them selves. Also and I am sorry this may offend, but a great many adult disabled people especially ones who acquire their disability in later life will not see any commonality with a campaign from the point of view of careers.

Lastly disability campaigners hate with a vengence children in need as it presents the children as "special" and objects of pity. To focus on children only would allow that narrative to continue or at least be misconstrued as again being a campaign not about human rights for all but about additional rights for some. Bad idea in my view.

moosemama Sat 02-Feb-13 21:41:02

Leith, I wasn't thinking that the campaign should even mention futures and careers, just that if we do end up requiring financial backing for the campaign and the wrong organisation is chosen to back it - ie one that talks the talk, but it's all just lipservice, then it could undermine the real point of the campaign.

I am an adult who has acquired disability in later life myself, so I do get where you're coming from.

Sorry, I perhaps shouldn't be posting on anything this emotive at the moment as am not doing so well cognitively/neurologically.

Leithlurker Sat 02-Feb-13 22:18:14

Mooman I was not replying to anything you said, please do stay and post and I ask not telling people what to do i AM ONLY SAYING THAT THIS IS A massive opportunity I am sure MN do not want to be in a situation where they are attacked by activists by ignoring some fundamentals.

In a way your experience and mine will never be the same but some issues we will face together such as the way the rest of society sees us even though you might have been a brain surgeon, or a top flight athlete in the past, you are now an object of pity and scorn. Children to some extent even though as highlighted on these boards are misunderstood or not given any consideration for being different, still do not have to face the media stereotypes or the hate of tax payers convinced that each disabled person could work if only they tried harder. Or the fact that life gets more complex with age and the desire to lead an age approprite life. This is still going to end up being a carers campaign if it is only aimed at children.

Moosman yours is a very good view and needs herd and shared.

moosemama Sat 02-Feb-13 22:43:35

Brain surgeon or top athlete - I wish! grin Nope just a very ordinary mum of three dcs, two of which happen to have been born with different disabilities.

I'm not sure I agree with your second paragraph entirely, although I do agree that focussing just on the children misses the wider point that we are trying to make.

My dc and I face similar hate on a daily basis from people who resent any extra funding or support that they get at school. I have stood in playgrounds with my children and listened to other parents bemoaning the fact that 'these children' take away funding/resources/teachers time and attention from their own children and how unfair it is, especially as they are most probably not going to amount to much anyway - even with all the extra support. Their children are brought up with a lack of acceptance and/or compassion for anyone who doesn't fit into their nicely packaged stereotypes and as a result make it their sport to, on a daily basis, let our dcs know exactly how and why they think they are 'less than'. In fact it's children just like that who have made my eldest dc's experience of school so miserable for years and left him with an extremely fragile self-image and feeling that it is him that's somehow in the wrong. So I would say my dc do have to face the media stereotypes and hate of tax payers.

... and that's the crux of the matter really. We need to change the attitudes of the parents, so that they can in turn teach their children - to quote a phrase that really resonated for me in your earlier post - "that our society is for everyone, equally".

zzzzz Sat 02-Feb-13 23:03:09

leith I found some of what you wrote interesting. I don't believe that there are "correct terms" and don't describe my children as "impaired". On the whole I feel people should choose there own descriptors if needs be, but generally I call mine by their names wink. I liked your last paragraph though.

I love the vision of "cute and unproblematic children".....mmmmm how can I put this, that is not the pertinence of most of the families that post on the sn boards.

dev I hope it gets better.

zzzzz Sat 02-Feb-13 23:03:55

Not pertinence, experience, sorry iPad typo madness.

MerryCouthyMows Sat 02-Feb-13 23:08:04

I apologise if I seemed overly harsh on Threesocks, but I have been biting my tongue for quite some time. Have been under a lot of stress recently, and have less, um, patience than I usually have.

Dev. I can't begin to imagine what it is like for you to live your life, or for your DS to live his.

What I do know is that there are no services to help me either, my family don't fit in anyone neat little boxes either.

Nobody connects the dots and realised that a family with 4 DC's, 3 with multiple dxd disabilities, neurological, physical AND medical, with the fourth DC about to embark on diagnostic procedures for Aspergers that is HEADED by a Lone Parent who ALSO has multiple disabilities, neurological, physical and medical, is going to be at fucking breaking point...

I may not understand fully how hard it is for you - what you find hard, I may not, and what I find hard, you may not, our experience as Carers will be different just as our DC's experiences will be different - but I have some insight, after 15 years of fighting the system for help and failing.

I hope you don't leave MNSN, you often speak wise words, and we all have times here where we need SUPPORTING more than we can offer that support.

We all have those times where it seems to be just too much to go on.

Like today. I did something I haven't done in 3 years, but was entirely necessary. I took all 4 DC's to town as I needed to buy shoes for all, and bras for DD.

It took just 3mins22secs for DD to have her first meltdown. After 4 shoe shops, a bra shop and finally in Sports Direct, I burst into tears in a sports shop because their fucking LIFT wasn't big enough for DS2's Mac Major AND DS3's pram AND me AND DD.

It was indicative of the fact that it doesn't matter how far disability awareness has come on, nobody nowhere is going to think about a family with 4 people with physical disabilities.

And when the shop assistant repeated for the third time that I could leave the DC's downstairs and 'pop' up in the lift, despite me telling her the previous two times that I can't leave the DC's with her, I exploded into a snotty mess.

How the FUCK do you explain to someone unwilling to listen that THREE, if not all four, of your DC's are on the Autistic Spectrum, and the one in the pram is also hyperactive (probable ADHD) and has multiple, severe, life threatening allergies, is not SAFE to leave with anyone who doesn't know him well (that'd be me or his father only then...) AND my DS2 will have a meltdown if I leave him with a stranger.

The fact was, I needed a lift big enough to fit DS3's pram in (which he needs as he is a runner with no sense of danger), DS2's Mac Major in, me in as I can't get up the stairs, AND DD in to push the Mac Major.

I don't know why I'm explaining all this, except to say that I REALLY understand the isolation, Dev. It eats you inside.

zzzzz Sat 02-Feb-13 23:14:08

Oh merry that sounds vile. I hate it when there just is no logistical way to do whatever you need to do. That said I am in total awe of you....4 SHO SHOPS AND A BRA SHOP AND THEN A SPORTS SHOP....*you da Mama*

WOW just fucking WOW!

WilsonFrickett Sun 03-Feb-13 00:23:59

Children ... still do not have to face the media stereotypes or the hate of tax payers convinced that each disabled person could work if only they tried harder. True. But they do have to face the stereotype that their problems at school are their own fault. And if they just tried harder they'd understand more. And if they were just less of a spakker or a spammer or <insert insult of your choice> then their peers wouldn't hate them. Or they wouldn't actually need to hate themselves.

I have posted repeatedly on this thread that the campaign shouldn't just be focused on children btw. Nor should it minimise the very real issues children face. Just cos they don't read the Daily Hate doesnt mean they don't feel its effects.

WilsonFrickett Sun 03-Feb-13 00:25:38

Apologies for the use of disablist speech ^^. But not for expressing my DS reality.

ouryve Sun 03-Feb-13 00:38:23

Dev and 3socks - you are the experts on your children, at whatever stage their going through just as I'm the expert on mine and everyone else here is the expert on theirs, or on themselves.

We're probably all far more skilled than average as parents. I doubt if any two of us here have identical experiences and perspectives. Whatever the eventual focus of the campaign (and it will need a focus if it's not to simply become ots of people shouting about how unfair life can be), we all have our own perspectives to bring to it.

Yes, my kids are only 6 and 9. That doesn't mean that I don't worry about what will happen if DS2 is still incontinent and impulsive in 10 years and my own health has deteriorated - I'll be in my 50s and I'm already outwalked by many a 60 year old. My eldest is incredibly bright. Yes, that means he could have a great future. He's also highly impulsive, demand avoidant and oppositional to the point of aggression. He could equally be on the road to obtaining a degree or in prison in 10 years.

ouryve Sun 03-Feb-13 00:39:57

3socks - deflation seems to have happened in my post. Sprry. Must get to bed grin

HotheadPaisan Sun 03-Feb-13 08:30:53

Children with disabilities experience that lack of understanding and resentment on a daily basis, it's extraordinary to think they are protected from discrimination, they absolutely aren't.

One approach would be to gather 10-12 stats or facts or snippets that MNHQ could tweet daily when the campaign starts. They could be on children with disabilities and parents with disabilities and parent carers and child carers, that would cover it all.

Simple things like the support a child with a neurological condition resulting in behavioural problem receives is facilitating other children's education as it ensures the teacher is able to teach. It would jave to snappier though.

Also, what is it we want people to do, think, be informed and be supportive. How can they do that? Be told the facts - on things like outcomes for children with disabilities. The exclusion rate for children like DS1 is extraodinarily high, which costs more in the long run than support now.

HotheadPaisan Sun 03-Feb-13 08:40:23

And you have to think about the people who pay attention to MN and will publish the press releases and link to the info, they are expecting to hear about issues affecting children and parents.

This is a great opportunity to effect some change in perceptions, everyone can come up with messages they want to get across.

HotheadPaisan Sun 03-Feb-13 08:42:47

I don't know how you get across the completely unrelenting and often isolating nature of it all. The single thing I have wanted to hear most over the last few years is 'What can I do to help?' Or 'What do you need?'

HotheadPaisan Sun 03-Feb-13 08:49:11

'This is my child' would cover it as it would be about children of any age, ditto for 'This is my Mum, my sister' etc but I'm not putting DS1 out there, certainly not with pics, so I'm not sure how effective that would be. Also I've seen campaigns like that before, I think we have to aim a bit higher than encouraging others to see people with disabilities as human.

Leithlurker Sun 03-Feb-13 08:54:26

My sincere apologise for any offence given to those that think I might have been downplaying the effect of negative attitudes of society with on sn children. Not what I intended at all and I hope to be forgiven in my nexy lifew if not this one.

It has served a purpose tho and that is to highlight that the negative stuff is based on fear, ignorance, bigotry, some hate but I do not believe that many, but more than anything an unwillingness to see impaired people as fully human. I would ask that those who say with every good reason that the children are not immune to the hate speech and the Daily Fail lies, that they so have the prospect of spending far more time as adults as they do children. Important when you throw in to the mix that things like children in need and all the big charities constantly play on the cuteness and the "Children are innocent" angle in order to raise money. As some one said further up this perception is of course far removed from the daily lived reality of all families never mind families with kids who have sn, but it does set up a false and harmful stereotype and public perception that all those on this thread who have talked about lack of support, lack of funding, lack of basic amenities, cuts to welfare. housing, and local services struggle to getacross in the face of such propaganda.

A quick response to Zzzzzz. Yes of course I understand that no right language exists and that no one descriptor will ever be used or should be used to name anything or anyone. Language should be diverse and open to ne used by people how they choose and in a way that they want to. An example would be that I pretty much always refer to myself as a "crip" both to be provocative and as a way of reclaiming language. Not to everyones taste but thats the joy of being an individual.

There is a but though, and it is to be found here en.wikipedia.org/wiki/Social_model_of_disability. The use of the word disabled and it's alternative impaired are part of the politicle social deconstruction of what the experience of being some one with additional challenges many put in place by society, is all about. Many Disabled People's Organisations, activists, and community members get very judge about the use of the word disabled, I have been reprimanded many times for forgetting my self. Frankly I am with you Zzzzz I will call myself what I want. However and this comes directly to the campaign, my whole purpose in writing these essays on this thread (sorry for the length people I was never any good at essay writing) is to ensure that any campaign is not denigrated or openly attacked by the very people it seeks to speak up for. In this instance the Disabled people's movement has been going for 30 odd years, any one wishing to show support even the all mighty mums net showed show that it recognises that and goes along with the general principles of the social movement.

Leithlurker Sun 03-Feb-13 08:58:54

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.

MerryCouthyMows Sun 03-Feb-13 09:23:26

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), s**z, 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.

zzzzz Sun 03-Feb-13 09:57:48

leith I don't have to show support to anyone just because they have been going for thirty years. A lot of older charities have the same attitude.

I don't think we should feel worried about hordes of more right on politicised people with impairments attacking our campaign or thoughts any more than I want people with no experience of people with disabilities so worried they might say the wrong thing they can't converse about anything.

Our voices should be heard. Maybe our language is more simplistic and our ideas more straight forward, but frankly I think that is our strength. The fact that an adult educated man with vast experience of living with impairment could think that my child experiences some sort of cotton wool experience of disability lite means this campaign needs to be done in a MN way.

star and mouthy I loved your posts. Yes I want people to know all of that.

I want them to know that the disability itself is only part of the problem.

Leithlurker Sun 03-Feb-13 10:23:43

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.

Leithlurker Sun 03-Feb-13 10:40:57

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.

sickofincompetenceandbullshit2 Sun 03-Feb-13 10:46:58

[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?

Leithlurker Sun 03-Feb-13 11:04:34

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.

zzzzz Sun 03-Feb-13 11:16:30

leith I didn't say I would ignore anything. But yes I would take my own path in the face of years of experience and dogma. How on earth do you think any of us escaped the "refrigerator mother" type view point if ASD without being o stand up and say "that is not our experience". I don't only want to mak things better to one small part of the whole. You are getting carried away with your own rhetoric. Read the thread.

sickof says it well.

zzzzz Sun 03-Feb-13 11:18:40

Xposted that's ok leith

I think MNHQ are hanging back on purpose to see what we think, which for me seems a good idea.

deadendsvillediva Sun 03-Feb-13 11:19:05

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.

AmberLeaf Sun 03-Feb-13 11:23:00

De ja fucking vu.

zzzzz Sun 03-Feb-13 11:30:41

No ones been excluded, no ones ideas have been thrown out.

IT IS NOT NEWS THAT CHILDREN WITH DISABILITIES GROW INTO ADULTS WITH DISABILITIES.

And particularly not news if you have a very dependent child.

It is not news that some people who post are very isolated.

It is not news that it will be hard work to produce a campaign that "fixes" anything.

I for one would like to try. What about posting some suggestions as to what would be good IYO to include.

deadendsvillediva Sun 03-Feb-13 11:33:40

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.

sickofsocalledexperts Sun 03-Feb-13 11:34:11

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

zzzzz Sun 03-Feb-13 11:42:13

dead it would be easier if you quoted to be honest than I tried to guess what the problem is, though obviously if you don't want to contribute that's fine.

sickofsocalledexperts Sun 03-Feb-13 11:43:52

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

moosemama Sun 03-Feb-13 11:47:08

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?

moosemama Sun 03-Feb-13 11:48:49

Fantastic post sickof.

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

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

SallyBear Sun 03-Feb-13 12:03:26

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.

sickofincompetenceandbullshit2 Sun 03-Feb-13 12:16:14

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]

Leithlurker Sun 03-Feb-13 12:21:10

https://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.

Leithlurker Sun 03-Feb-13 12:24:20

www.seemescotland.org/

Someone up thread spoke about the see me campaign, this is a link to that web page.

sickofsocalledexperts Sun 03-Feb-13 12:24:24

Yes that is great Leith - positive images (as opposed to pitiful/scary/scrounging)

Leithlurker Sun 03-Feb-13 12:28:09

Amber leaf what was your comment at Sun 03-Feb-13 11:23:00 about?

Leithlurker Sun 03-Feb-13 12:29:06

See I can do positive sick of lol.

Leithlurker Sun 03-Feb-13 12:32:15

The notion of rights not charity could be something we could use? That would be all inclusive and allow people to be strong and proactive instead of pleading for things or asking for understanding, we are after all saying this is not our problem the problem is with society as a whole.

AmberLeaf Sun 03-Feb-13 12:35:18

Leithurker, it was me being exasperated at the way this thread has gone. The same way as the discussion on what changes to boards names was needed.

Negativity, when asked for input so that we have some say is so pointless.

It always happens and its always the same arguments.

Accusations are made, and then the accusers say they are being attacked....

Leith, my DS has been out of his special school for over 3 year now. It's for needs that are not being supported. He is challenging and complex. The fight to pick him up and put him there became too much as he got bigger and more aggressive. He has a 'right' to a full time education, where is it?

Again, not me shutting the door on a possible way forward just highlighting my personal experience in how it doesn't work. (do I have to disclaim everything I write!!)

threesocksmorgan Sun 03-Feb-13 12:41:33

sickofincompetenceandbullshit2 outing a name change is despicable,
fine you don't agree with me, but to do that is vile and I have reported your post.
thanks. I will now have to name change again.
nasty and beyond the pale to do that angry

Leithlurker Sun 03-Feb-13 12:43:28

Devient, your point is what I am saying, you child has a right, why is that right not being given. Mainly it is due to the system not having the ability to give your son what his right is. That is just the same as children needing nursery or older people needing specialist care at home.

exactly but when I highlighted his situation I was slated by parents of SN kids one way or another.

This is also just one example of how the 'system' is letting him down but then when I tried to highlight that I got the same response.

Kids like my DS end up in 24 hour supervision, hidden away.....

But this wasn't what was needed.

I never noticed that 3socks, that is bad, I feel for you (((hugs)))

AmberLeaf Sun 03-Feb-13 12:58:13

You weren't slated for anything devient

You just talk about your problems as if no one else has problems and no one else could ever possibly understand, sorry but it is soo patronising.

I know you have it very hard, if I had the power to change things for you I would.

But blaming us here, is so unfair.

AmberLeaf Sun 03-Feb-13 12:59:45

Threesocks, I didn't think your name change was especially secretive?

Sorry you are upset at being 'outed' but the first time I saw 'threesocks' I knew it was you.

I felt slated, alone and what I had to give wasn't needed.

I have said this over and over and will not repeat it.

I have blamed no one, I have merely pointed out our scenario is not whats needed, yet I am in it just as much as the next.

But then with comments about under estimating what it's like to be a parent of a disabled child, what do you expect.

Like I said the other day, we have another 3 kids with SN, this was is different, harder to cope with but hey ho, I hoped my not keep mentioning these I wouldn't sound as patronising.

moosemama Sun 03-Feb-13 13:13:26

I really like this quote from the This is What Disability Looks like website.

"This is What Disability Looks Like seeks to counter messages that disability is a tragedy or inspirational."

It sums up not wanting to be pitied, excused or held up as special, but instead reinforces that disability just is and people who have disabilities are. If all people with all their differences and needs were accepted as simply being part of society, it would go without saying that every person should have their needs met - it wouldn't occur to anyone to even question it.

Dev how can we make sure we get across to people with very little or no understanding what the heart of the issue is for you and your ds? What you are going through is absolutely key to our point.

I was just trying to get my head around what is at the root of the problem. Am I right in thinking that it's down to the strict rules and guidelines ruling out rather than providing what people need? If you don't fit their profile, then they can't/won't help you. Whereas if there was an open assessment process and less shrinking of budgets, arse-covering, tick-boxing and passing people onto the next guy ... and the next and the next, the relevant agencies would be able to get together, assess the full extent of a person's needs and come up with a plan - shared or otherwise to properly support them.

Which leads us back to the whole point about people who have disabilities simply being part of society who have equal rights to everyone else to have their needs (and rights) met.

It's the same problem across the board, with almost every issue. Take the Statutory Assessment process, which is supposed to provide educational support for children with wide ranging disabilities and abilities. If you don't fit their, very narrow, criteria, the door is slammed in your face. Not bad enough - too bad - too complex - not complex enough etc.

It's the same issue, the system is closed, limited and underfunded and there is simply nothing/no-one there for people who don't 'fit'.

How do we get this across to people, who in all honesty, live completely oblivious to the fact that this is even happening?

when it comes to making people aware of disability and our kids, it won't work on here because of all the disablist posts seen. Parents are now defensive and come across quite heated. This is whats not needed but to get away from that here when so much has gone on it will be difficult. Then to bitch amongst ourselves already divides it and could never be pro active. Hope that makes sense.

moose don't worry about us, I would love to help but don't want to come across as everything already used against me. I am a nice person really in an unfortunate position, thats all xx

moosemama Sun 03-Feb-13 13:22:14

But I do worry about you Dev - and others like you.

We all need a voice, we all need to be seen and heard and those who are already isolated need more, not less, help to make that happen.

If you aren't comfortable contributing to the thread, perhaps you could support the campaign through pm or email - or direct communication with MNHQ?

should of said DH has also been through SS etc he is hard work too. if anyone wants to take him on feel free grin

HotheadPaisan Sun 03-Feb-13 13:26:15

But MN want to help change that, they have already improved on disablist and sexist trolling posts, they know it's not a level playing field and not everything or everyone is fair game for thinly-veiled attacks disguised as debate.

I have a glimpse of how it is for you dev, I didn't understand either until I listened to you more and understood more. There's room for all ideas and experiences, nobody has to be quiet or ignored.

HotheadPaisan Sun 03-Feb-13 14:06:56

#AutismFact on Twitter is pretty good, we could model info on something like that.

sickofincompetenceandbullshit2 Sun 03-Feb-13 14:08:01

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

If you look back, that was said in the heat of the moment in response to the comment mentioned.

I do not want DS in resi, we were having a really unbearable time when it was mentioned. Yes it still might happen, I will be gutted, just unfortunate no one saw my sorrow through it. What you are saying about him being hidden away is twisting my words and feelings.

I am not pointing out the crap side of MN and have always said I would hate my worst enemy to be in my position. I am merely defending my feelings and situation.

I gave a positive, my DS is still with me.

Sorry for the quick post.

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

AmberLeaf Sun 03-Feb-13 14:26:54

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

AmberLeaf Sun 03-Feb-13 14:28:48

Who sent that PM then?

Why on earth would you post a PM on a thread anyway?

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

sickofincompetenceandbullshit2 Sun 03-Feb-13 14:36:16

Dev sad I'm honestly not trying to bully you. Nor is anybody else. I'm just trying to point out the vicious circle you're in when you reject any support and then say you don't get enough support, and how wary it makes people. People do want, and try, to support you.

PolterGoose Sun 03-Feb-13 14:36:40

This is getting ridiculous confused

Anyone who was on the thread where kungfupanda posted eloquently about tolerance and ceding a little comfort for the benefit of someone else should understand the seeds of this potential campaign. But instead of a sensible discussion about the issue it has deteriorated into arguments and personal attacks.

sickofincompetenceandbullshit2 Sun 03-Feb-13 14:43:08

Yes. Let's get back to the issues. I like the idea of a campaign that looks at raising awareness of people with all types of disabilities and all ages. I have no suggestions for a slogan but like the idea of one about seeing the person as well as the disability, and the 'it could be you/ you child' idea.

dottyspotty2 Sun 03-Feb-13 14:45:50

But Dev has tried so many different things with her DS nothing seems to work in his case, so I can see where shes coming from try seeing it from her point of view its a bloody hard life she and her family have.

hazeyjane Sun 03-Feb-13 14:59:17

This is bloody depressing. I think the idea of a campaign is a good one, I don't think it has to be world changing, but I think within the parameters of World of Mumsnet, it could be a positive thing.

I know other posters here (myself included) who have been educated and enlightened by posts from people on here (be they parent's, carers or posters who are themselves disabled). But I don't want to be part of something which causes this much conflict on a board which, to me at least, is all about support.

I am a parent of a small child who happens to be disabled, I am not an activist.

zzzzz Sun 03-Feb-13 15:44:34

dotty there is not lack of sympathy for dev and the difficulties she faces.

In fact many of us are quite well placed to imagine what it might be like.

I have found dev s contributions on the sn boards interesting and thought provoking and I like her edginess. However I wouldn't dream of patronising her by not responding to what she says as I would to anyone else, and when she (or anyone else) offends me I think it is totally appropriate to say so.

Back to the campaign

"Ceding a little comfort" is a message I like.

Something like "I can't come half way to meet you, but if you can stretch a little further, I can stand by your side"

"Tiny changes, huge impact"

I just hope that this thread actually gets ideas across for a campaign - that is what this thread is about, debate is good, and we might not all agree. Everyone can have their say, I don't expect people to respond to my every post, if I feel the need to have attention focused on me/ my problems I start a thread asking for advice and support.

Mn are trying to start a positive campaign about sn, and recognition of disability - that is good, not simple, but if it changes opinion, brings about acceptance and compassion without pity, consideration without patronising and makes people see the person not just the disability then surely that is a good start.

Strongecoffeeismydrug Sun 03-Feb-13 16:12:17

This is making depressing reading!
My DS is also very severe,we are isolated,we as a family do suffer and that is why we need to change things!
It doesn't matter one bit whether I or DS have a harder time than you or you have a harder time than us , we have all got one thing in common and that's disability affecting our lives.
And yes originally I did only have children in mind but I'm well aware that DS is going to become an adult and face the same challenges he does now ( probably more ) do can't we just move on and remember the intention of this thread as being something positive...

sickofincompetenceandbullshit2 Sun 03-Feb-13 16:21:40

Agree!

MerryCouthyMows Sun 03-Feb-13 19:15:34

Leith, you don't need to apologise to me. I was just trying to explain that children with disabilities don't receive less discrimination than adults with disabilities, but that a child that is discriminated against because of their disabilities is likely to become an adult that is discriminated against because of their disabilities.

No anger involved, just trying to get across that this issue affects everyone, and even if a campaign is started about children with disabilities, it can grow (just as our children with disabilities do) into a campaign about adults with disabilities too.

I like 'this is me' and 'it could be you'

I'd like it to be a very practical, down-to-earth campaign, rooted in real life examples of things we might do/not do which make life more difficult or unpleasant for people with disabilities and what we could do better, eg. why it's important to get the fuck out of the wheelchair space and what the effects are for wheelchair users if we don't, why it's not on to grumble and tut when a child who 'looks ok' is allowed to skip the queue at the fairground ...

I realise though that this is asking those of you with direct experience to do some educating and I understand if you've had enough of this role.

I'd like the campaign to include children, adults and families.

Leithlurker Sun 03-Feb-13 19:53:28

Thanks Couthy I could not decide if I had upset you or if you were agreeing with me.

tompride.wordpress.com/2012/07/03/toby-young-disabled-children-should-be-excluded-from-schools/

The link takes you to a politicle blog by Tom Pride in which he makes comment on an article written by Toby Young in which he argued that things like wheelchair ramps in schools were a waste of time and money because all inclusive education does is dumb down the education that the able bodied kids get.

He kind of defends himself in this piece here www.nosacredcows.co.uk/blog/2026/my_latest_spectator_column.html:
These are not new articles but they do highlight the mindset that we should go back to hiding people with impairment or looking after them in specalist institutions. In other words going backwards not towards a more equal and fair society.
Whay I would like is for MN to bring people like Toby Young and other influential bloggers and writers to a meeting where they can be challenged, these are the people that are setting the mood music of discrimination and allowing the government to say things like scroungers and austerity.

Additional Needs? No. Additional Rights!

notnagging Mon 04-Feb-13 01:39:18

Toby Young runs a free school now. I hope he's changed his views.

RowanMumsnet (MNHQ) Mon 04-Feb-13 08:51:31

Hello

Apologies for the silence - we need to read through all of this, digest what you're saying and come back to you. We will try to do that ASAP.

Thanks thanks

Leithlurker Mon 04-Feb-13 08:57:43

Take your time Rowan, the "othering" of people with impairments won't be going any where for a while.

MaryBS Mon 04-Feb-13 09:01:31

I don't think tolerance is a good word. Nor is acceptance, as that implies "putting up" with something. What I would like to see is something that embraces seeing the person (adult or child) first, and the disability after. But not (as someone said to me once) "I don't think of you as disabled".

blackeyedsusan Mon 04-Feb-13 10:55:05

talking of putting the child first... NOT ofsted talk of "disabled children" in their reports..

Peachy Mon 04-Feb-13 10:59:55

Here's a start MNHQ

Consider what retweeting Tweet about Richard III - http://bbc.in/11AG758 > It wasn't just a hump-ch, then ;) ' says when put alongside this campaign.

I mean, really?

PeneloPeePitstop Mon 04-Feb-13 11:02:50

All about paying lip service, wasn't it?

ouryve Mon 04-Feb-13 11:35:37

Notnagging he hasn't. No way would I send either of my boys to a school of his.

I just hope that, in the not impossible event that he finds himself sick or disabled and unable to walk, he remembers that he needs to drag himself up the stairs. Just to avoid being PC, like.

Peachy Mon 04-Feb-13 14:09:08

I'd adore opening a free school for kids with ASD / speech issues etc here; I have a building all picked but nowhere near enough cash to do it sad

But a prat like T Young- yuck

As for dumbing down yep, that's why ds1 with his asd is thriving and planning on uni; my mate with severe cp (3 affected limbs and a voca) has a business and graduates this year. He won;t mind me linking, this is him here

notnagging Mon 04-Feb-13 14:41:38

He has & is now expanding into primary. He cant refuse to take children with special needs can he? But it is a free school so Im not sure of the rules.
www.telegraph.co.uk/education/9405989/My-first-free-school-has-passed-the-test-now-for-the-next-one.html

This thread has now made me very uncomfortable on MN. I feel like I can't post or comment to much now. Yes it's been a lifeline for me, especially being stuck in the house 24/7 with DS. However after I tie up lose ends that will be me gone. I don't know if my posts stay even though I'm gone so if they don't it won't matter if anyone sees this or not.

I think the start of the campaign based on special needs and severe disability needs clarity around what special needs and severe disability are.

sickofsocalledexperts Mon 04-Feb-13 14:53:02

Hang on, I thought Toby Young specifically said he wasn't referring to SEN kids in the 2nd article quoted. Let's not hang him without fair trial

notnagging Mon 04-Feb-13 14:57:46

I don't think he would have been allowed to open a free school if he genuinely had thoughts like the ones quoted before but who knows.

Peachy Mon 04-Feb-13 16:08:22

I think he's fairly well known as an academic elitist but no, he wouldn;t be alloed to open a free school that did not accept kids with SN.

But the stats don't seem very inclusive about who generally is gaining admittance (NOT just to his school, to all free schools in general)

Also- and this is a debate I've had with my LEA recently- would YOU want your child attending a school where you knew they were really either unwanted or that the placement did not feel they can cope with them? Because I would not.

RowanMumsnet (MNHQ) Mon 04-Feb-13 16:25:13

Hello and sorry about the echoing silence; we've been mulling. Here's what we think (and apologies in advance if any of the terminology in here is off - as Peachy's response to our RT shows, lots of us here at MNHQ need a bit of schooling in these matters too).

We hear you when you say you want this campaign to be about all people with additional/specific needs, not just the under-18s. Those of you who suspected that we were thinking about the under-18s were right; this is because the thread in question was very much about the behaviour of a young child, and over the years there have been many eloquent posts by parents who are upset or angry about other people's reactions to their children's behaviour.

We're still inclined to make this a campaign about under-18s (although, in the end, if that's not something our posters want, it won't get off the ground and we'll have to think again!) The campaign space is crowded - even in a specific area like disability - and in order to get any traction or attention, you need to think carefully about your angle. Over the years, we've come to believe that we are at our most effective when we campaign on things that are very specific, and which speak to what the media and the public in general expects from us. As a site for parents, we think we could make a fairly big noise in the area of children with additional needs and the perception of their behaviour: it's a very specific issue, one that hasn't been widely addressed, and one that we think could catch people's imaginations.

We also think it has a very specific purpose, which is to get people to consider whether the behaviour they're seeing is 'naughtiness' or something else. Much as this is an idea that's fairly familiar to MNers because of the many debates we've had over the years, we suspect it's a completely novel idea to many in the wider public.

While we can see from the thread that people want a very broad campaign about lots of different aspects of disability, inclusion and perception, in our experience it's much more difficult to get the press and public to take an interest in this sort of thing: without a single, sharp, specific angle, the whole thing risks being written off as a bit vague and unfocussed.

As PolterGoose says: 'I agree with hazeyjane if the campaign is too broad it will become meaningless. There needs to be a reasonably tight focus to mean something to those it is aimed at. To cover the full range of disabilities, plus all ages, plus parents/carers is just too huge.'

That's not to say that the material associated with the campaign couldn't cover lots of the brilliant ideas here (we love the stuff about stats, about language, about the law, about the different conditions and impairments that people can be born with and/or acquire, about challenging 'DLA scrounger' myths, and about equality and respect); we just think we need to be careful about the top-line focus. As we're sure many of you know only too well, many disability awareness campaigns have come and gone over the last couple of decades, many of them without making a big impact.

Anyway, that's our thinking - but it's not the last word by any means. This isn't going to work unless MNers are happy with it. So do let us know what you think.

And we will, of course, give serious consideration to asking Lidl to partner up with us wink

sickofsocalledexperts Mon 04-Feb-13 16:30:35

I agree - I think Mumsnet is basically a brand about mums and kids, and therefore that is the campaign that would work best.