New MN campaign around children with special needs

[RowanMumsnet]

Hello

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

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

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

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

Thanks
MNHQ

I 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.

Understanding. That works for me.

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.

Haven't read all the thread but just want to add my support, even though I don't have anything to contribute.

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.
twitter.com/search?q=%23heardwhiledisabled&src=typd

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.

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. 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.

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.

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

Yep. What sick said.

That's a very good idea, zzzzz.

You make perfect sense, Moose.

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.

Applauding Moose for summing things up so eloquently

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.

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.

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.

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?

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?

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.