How to Start a Revolution, erm, maybe…

On Saturday I went to the AGM of the National Autistic Society. Our family are members and have done a number of things to support the charity over the past couple of years from being featured in their donor mailings to busting a gut doing the Tough Mudder…

It was thrilling to hear how their ‘Too Much Information’ campaign, to which my autistic daughter directly contributed, has broken records in both reach and response, touching millions of people: members of the public and members of parliament alike, and I believe it has seeded long-term change for the better.

The main thing that struck me at the AGM was that (even at a London venue) I thought attendance would be higher.  I am not underestimating the efforts involved for parents or autistic adults, in leaving the house for several hours, travelling to London, being in a large group… it was my first AGM so I’m not sure what I should have expected.

I definitely expected to see more young independent autistic adults.  Any, in fact.

I am conscious that some autistic adults are critical of the NAS and that its support of parents and families of autistic people is sometimes perceived as to the detriment of the autistic person themselves.

The society was originally formed by parents and they do continue to have a strong voice but I think it must also be acknowledged how far the NAS has come in recent years to ensure that the ‘actually autistic’ voice is heard loud and clear.

This is a small charity, what they achieve is far greater than the sum of the parts, and having met many of their staff and key supporters (autistic and not), I am awed by the passion, commitment and tenacity they all invariably demonstrate.  Chief executive Mark Lever acknowledged that they get it wrong sometimes but, for me, their openness to listen and learn is applaudable.

On the train home, it got me thinking about when I was in the sixth form at school.  We went on a visit to the Houses of Parliament and the MP who volunteered to speak to us and take questions was Ken Livingstone (don’t groan, bear with me).

Politics to one side, one particular thing that he said has always stayed with me.

He explained that his personal beliefs were not the same as those of the Labour Party; but of the large political parties who had any real significant chance of making a difference, it was the best fit for him, the closest to his beliefs.  Easier to try and influence change within the party to better suit his ideologies than stand alone.

He took the responsibility of being a member of the Labour Party and an elected representative very seriously.  He clearly understood the difference between his personal values and beliefs and his duty to deliver upon the mandate set by those who elected him, under the banner and promised policies of his party, the Labour Party. That did not mean, however, that he ever stopped trying to convince his colleagues within the party to move further towards his own personal philosophy and beliefs when they formed the policies of the future.

He understood the democratic process, within and outside the party.  He understood the importance of idealism and also the need for pragmatism, cooperation and even simple participation if anything significant is to be achieved at all.

There is nothing wrong with freedom of speech nor outright disagreement with the status quo, but to catalyse change, it’s not always what you say but how you say it, when and to whom.  The system may be broken, but it’s often easier to change it from within than simply reject it wholesale.  That is often the boring, bureaucratic way to start a revolution that sticks.

I don’t like where we’re at generally in the world.  The divisive politics either side of the Atlantic, unpleasant and even violent behaviours from vindicated winners and disenfranchised losers alike.  Democratic process seems to be losing its way.

Sometimes I feel that in our modern social media enabled world, there’s a growing expectation that you can start a revolution via your iPad from your sofa.  There’s also this sharp change in behaviour and etiquette online where it appears that the ‘normal rules'(?) of respectful debate and discourse tend not to always apply.  I count myself sometimes guilty in that.

We watch refugee kids dying on beaches and we join Facebook groups and tweet and hashtag and petition but our governments’ stances are not changing one bit.  It’s too easy to click a button, sometimes you have to engage more deeply, enter a discourse and hold onto it tenaciously for as long as it takes.

I’m well aware that blogging isn’t discourse.  It’s more akin to muttering under one’s breath at a bus stop.  Twitter is no more successful (yet) at securing societal change than Speakers’ Corner at Hyde Park.

I think it’s important for everyone who seeks to quickly and decisively further the awareness, acceptance, understanding (argh, those words) of autism and who wants to campaign for autistic rights to note that National Autistic Society works to an agenda set by its members and membership is open to all.

You then get your voice heard by, and as part of, the leading autism charity in the UK and one of the most forward-thinking and respected autism charities in the world.  You get support to form a local group, receive training, provide peer support to others.  You can campaign under a recognised and trusted brand (sorry, but there’s no denying it helps), change the conversation, educate, dispel the myths and break the stereotypes…

Most importantly, you can vote for your preferred local representative on the NAS National Forum, elected individuals from the membership who represent member views directly to the board and trustees (and staff).

So, you could start a revolution the traditional way from the ground up or you could join an organisation that already has a clear and respected line of communication with government, policymakers, major employers and cultural influencers.

I think I’m correct in saying that there are currently about 20,000 members. If a significant number of motivated autistic adults joined the National Autistic Society, the membership would easily be in the majority autistic, as then could be the National Forum. It could be “nothing about us without us”.

As I have said, there’s no other agenda, just the one set by the members.  It will be bureaucratic and there’s process involved but that’s because there’s also transparency and accountability.  I am one of those “autism parents” and until my daughter reaches majority I expect to have an influence on society’s promise to her, sorry, I do.

I would however be thrilled to be the wind beneath the wings of intelligent, articulate, autistic women who are the role models I seek for my daughter; I have no real agenda of my own other than that everyone’s voice is heard and recognised via a managed democratic process so we move forward together in consensus.

Working with a national organisation, it might take a longish while to feel that your views and priorities are reflected as you would hope them to be but (with no disrespect to anyone) it would probably happen a lot quicker than us tweeting and retweeting each other and agreeing amongst ourselves almost in a vacuum on Twitter whilst the Joe Public majority are sitting on Instagram looking at a Kardashian butt.

Just a thought… There are loads of ways to start a revolution, I’m not saying this is the best… back off to the bus stop to sprinkle cake crumbs and chat to the pigeons again.

Photo Credit: wonderferret Flickr via Compfight cc

3 thoughts on “How to Start a Revolution, erm, maybe…

  1. Hi Jill,

    I hear you and this is written in the spirit of thinking out load with morning coffee. My instant thoughts…

    I honestly think for many it is a question of spoons and for others one of trust. We need trustworthy allies, but more than this we need to lead and self-direct so that blunders like the recent NAS Christmas ad just don’t happen.

    While this still comes from a national lead organisation it feels a bit more than rubbish and is extremely off-putting. The TMI campaign has been highly successful in wider terms but NAS does nothing to woo adults with this kind of crap.

    The stress of managing to get to and get through an AGM and subsequent impact on preceding and subsequent days has to be set against the effectiveness of that participation. Maybe many adults make that calculation and feel its not worth it?

    Some of us would not even know the AGM was on (I include myself in this category).

    Too many assumptions I think exist about how and why we might wish to take part in this kind of ritual or that it is in any realistic way accessible to us (this is not a criticism of your post btw but a general point).

    I agree Twitter is a vacuum and it depresses me to realise how much of a bubble blogging etc represents – but it is self-led and builds community democratically with significant impact on our everyday lives. My peers are my mentors and guides. I don’t need NAS for this and NAS do not connect with my life on a personal basis.

    I think this may be about how personally connected and invested adults feel with NAS as an organisation – and perhaps many of us just don’t.

    Not sure what the answer is but self-direction is what most appeals.

    Thank you for the thought provoking read!

    Sonia xxx

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    1. …and as ever thanks for the brilliant challenging response!

      Not in defence of (at all!) the Xmas campaign… apparently the “aha” moment that is pro-autistic plays out over the later stages of the campaign…

      *Sighs*

      Suffice to say IMHO it is a very shite campaign by any advertising standard and exemplary of how these things play out beautifully and impactfully on mood boards in a creative presentation in an office setting and totally fail in real life.

      I think many brands need to go through the learning curve of thinking that people are *that* engaged and will see/hear a complete convoluted message delivered over time/media and then realising they’re not… waste of money…

      The NAS is flawed. Most large organisations are… You can’t expect perfection from any human nor group of!

      I judge them on their intentions (that are increasingly headed in the right direction) and allow for an amount of cock-up … few of the staff there are doing it as a ‘day job’ they mostly have a family member or multiple with autism.

      But equally I hear ya back!!

      I am in an amount of turmoil as autistic rights campaigning has become a true passion for me that I find hard to ignore but I concede it’s also an outlet that keeps me going (hesitates to do the “autism parenting is harder than normal parenting” and get shot down and burned eternally via Twitter (!), but my parenting experience IS ‘much more intense’ at least than many of my peers) and without some kind of frequent interaction with the gentler side of the online autistic (not autism parenting) community I would be lost…

      …yet, I don’t ‘belong’ and can feel very unwelcome (indirectly) from some of the more militant campaigners who just don’t see it’s anything to do with me.

      I suppose it depends on what you seek – personal support, societal change –
      I feel really concerned that an “autistic only” approach that excludes (and inadvertently alienates) parents in difficulty could set things back tons, especially in today’s political climate.

      …and I think the flexibility of my principles and morals so that I can “use” things as a leg up to “get on” is perhaps very NT?

      I don’t know!

      I am trying to find time to learn more about intersectionality. I think that’s ultimately the only way forward post-Brexit and Trump… everyone who feels marginalised and does not have equity comes together against the prevailing majority rule and fights…

      I might just stick to craft 😦

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      1. Oh – I tried to import my responses in red within our text but it hasn’t happened – hope you can pick out my bits Jill & TYSM for the chat. xx

        …and as ever thanks for the brilliant challenging response!

        It’s good to talk Jill – thank you for the honest response.

        Not in defence of (at all!) the Xmas campaign… apparently the “aha” moment that is pro-autistic plays out over the later stages of the campaign…
        *Sighs*
        Suffice to say IMHO it is a very shite campaign by any advertising standard and exemplary of how these things play out beautifully and impactfully on mood boards in a creative presentation in an office setting and totally fail in real life.
        I think many brands need to go through the learning curve of thinking that people are *that* engaged and will see/hear a complete convoluted message delivered over time/media and then realising they’re not… waste of money…

        There is no excuse for drip feeding that story line to the public in that ad – and this does (along with the other personal issue which you know about) erode trust. It is the thinking about autism that is flawed – the execution of it just compounds the poor concept.

        The NAS is flawed. Most large organisations are… You can’t expect perfection from any human nor group of!
        I judge them on their intentions (that are increasingly headed in the right direction) and allow for an amount of cock-up … few of the staff there are doing it as a ‘day job’ they mostly have a family member or multiple with autism.

        Look at the power structure and who is being paid what, for example. Look at how I was treated, how autistics have had to push to be paid well historically speaking. And look at who is driving the debate on a civil rights.

        But equally I hear ya back!!

        I am in an amount of turmoil as autistic rights campaigning has become a true passion for me that I find hard to ignore but I concede it’s also an outlet that keeps me going (hesitates to do the “autism parenting is harder than normal parenting” and get shot down and burned eternally via Twitter (!), but my parenting experience IS ‘much more intense’ at least than many of my peers) and without some kind of frequent interaction with the gentler side of the online autistic (not autism parenting) community I would be lost…

        I am also a parent. I see my job these days as building resilience as an urgent priority. I had zero support – I know how intense the parenting is and don’t underestimate it. Campaigning as a mission is helpful if you consult and let autistics lead I think – you’re good at this. We need you.

        …yet, I don’t ‘belong’ and can feel very unwelcome (indirectly) from some of the more militant campaigners who just don’t see it’s anything to do with me.

        Some of this misfires and can seem negative. I personally don’t agree with sections of my community at all. However – they have a right to their anger a voice – it’s really incredibly tough for autistics and many don’t have the privileges someone like me enjoy. I would be murderously angry with the NT world had I not had so much love in my life.

        I suppose it depends on what you seek – personal support, societal change –
        I feel really concerned that an “autistic only” approach that excludes (and inadvertently alienates) parents in difficulty could set things back tons, especially in today’s political climate.

        I’m not so sure we hold anyone or anything back.

        Conserving energy and surviving are my priorities at the moment – this must be true for so many of us. Also after diagnosis there hasn’t exactly been an avalanche of people wanting to know what it means for me to be autistic – NT who know me don’t ask. If the people who know me can’t engage in a conversation about autism then what chance with strangers/general public?

        …and I think the flexibility of my principles and morals so that I can “use” things as a leg up to “get on” is perhaps very NT?

        Autistic people are very capable of being flexible because we are logical. If we can see the point then we can adapt our thinking and behave accordingly. Don’t be fooled by our gentle demeanour 😉 These may be more fear driven issues and those of trust for autistics?

        I don’t know!

        I am trying to find time to learn more about intersectionality. I think that’s ultimately the only way forward post-Brexit and Trump… everyone who feels marginalised and does not have equity comes together against the prevailing majority rule and fights…

        Intersectionality is a great idea.

        Spaces between ND & NT are also essential to mental wellbeing for autistic people – though I feel sad there is so much conflict and alienation. But I’m not so interested in building bridges as I was before my diagnosis.

        I might just stick to craft😦

        I have to accommodate NT people everyday of my life and yet I am not accommodated by anyone unless I make waves of some kind. This is exhausting. Sticking to craft is pretty attractive right now! xxx

        Like

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