New MN campaign around children with special needs

[RowanMumsnet]

Hello

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

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

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

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

Thanks
MNHQ

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)

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.

[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.

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

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.

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

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.

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.

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.

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.

Brain surgeon or top athlete - I wish! 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".

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.

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 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.

Apologies for the use of disablist speech ^^. But not for expressing my DS reality.

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.

3socks - deflation seems to have happened in my post. Sprry. Must get to bed :o

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.