What if we’re not wrong? (Manifesto for the neurodivergent and differently-able)

The hilarious and heartbreaking thing about many of us with our different brains is…all our waking hours, minutes, seconds are taken up with trying to pass ourselves off as ordinary…in order to be left in as much peace as possible in a ‘predominantly’ ordinary culture.   Whereas Neurotypicals spend their time (many of them) faking mediocre as being extraordinary and unique, while really all being fairly similar to each other…because they can’t step too far out of the pack!…so what if, we just ran with it (or rolled with it…depending)
What would happen if we acknowledged some of the things we get told we’re no good at/good for, are things we actually want nothing to do with anyway…we only think we should do them because human-made daily life tells us we must, but what if we put our best foot/hand/wheel (whatever our physicality) forward and decide to try to give ourselves to our passion, and keep reminding ourselves the ‘doubters’ and questioners might be wrong…or their skepticism comes from themselves and is not actually about us…they’re just projecting their own limitations on us, while needing to clip our wings, psychologically -speaking…because of their own inadequacy!  What would the world feel like for us if we turned to each other for support/feedback and believed the positive feedback we received about ourselves and our abilities?
I find myself increasingly these days using a particular bible quote (I’m not religious…nor am I judging it though)
when dealing with particularly heavy-handed inconsiderate non-compassionate individuals…’forgive them, they know what they do’…you’d be surprised how often it’s applicable (then I avoid them like the plague…but that’s just me)’
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The Big Things (a play about female autism…or is it?)

I’m not a writer particularly or an academic or reviewer so please bear with me…what I am is a late diagnosis (dx) aspergers female (dx at 38,40 now) with a diagnosed autistic mum (diagnosed at 69, just months before me) and I have two sisters with a son each on the spectrum.  I’m also an actress, performer and a member of The Stealth Aspies alongside Paul Wady, Janine Booth and Alain English.  I have pretty strong opinions on the misrepresentation of autistic people onstage (well in any cultural form actually) which is why I wanted to see The Big Things for myself before sharing opinions on it.   I went to see it on Wednesday night and I have taken a bit of time since to work out what to say about it (well about 48 hours anyway). I felt strongly about seeing it because the production company who staged it have received quite a grilling on twitter of late and I just wanted to see the play for myself, i’m not good with an impassioned twitter storm (don’t have the spoons and can’t keep track easily)  unless I really have seen/know the facts…i’m just not that confident.  Also my degree was in devising theatre and performance analysis so the puritan in me wanted to see if it was worth being upset about.  I’m glad I did see it, but I can’t say I enjoyed it. I appreciate the company (Kibo Productions) providing us with tickets and chatting with us after, so thanks to them for that.  It was much appreciated, in a busy week it took extra spoons to fit in travelling over to London to see it so their response to my heading over was hugely reassuring.

The play

I genuinely loved the space, the set, the staging choices and the cast!…there is some lovely (sometimes funny) dialogue in it, it’s an engaging piece, and it’s moving in quite a few moments but then there’s the other thing

The problem

(the big thing!…if you will) the elephant in the room, which is the fact that it’s a story entirely shared with us through the eyes of the man in the relationship, and the woman is autistic (we never hear from her…ie breaking the fourth wall and sharing with us…well not early on enough for it to make any difference to how we feel about her)

The characters

The character’s are called Grace and Malcolm, and the perspective on Grace feels patronising in places,  she seems very crudely drawn, like a theatrical character equivalent of a child’s first draft of an autistic woman…simply there to serve the momentum of the story of Malcolm’s relationship trials and tribulations with the ‘girl on the spectrum’.  We don’t get to know Grace…at all really, her opinion on anything is only shared with us as a complete footnote to their entire story.

The relationship

Malcolm obviously romanticizes Grace from the beginning, which means her charming differences and quirks are presented lovingly to begin with, slightly simplistic but so far so good but once we get into the ‘meat’ of their story ie marriage, motherhood etc increasingly it feels that Grace is shown as not up to the task of being a mum  and because we’re only hearing from Malcolm we don’t get to hear how she feels about all of that, so we have a very unbalanced view.  Most stories come to us through one character’s eyes/experiences ok, that bit’s fine, but when we know

a) autism is one of the most misunderstood ‘conditions’/neurotypes on the planet and

b) the public know next to nothing about autism in women (let’s face it we all may as well have been unicorns ‘til a few years back) it’s a little worrying to have such a traditional stereotype and a negative take on her capabilities in life (ie the culmination of their family  situation due to Grace’s inability to cope) presented to us onstage.

On a personal note Malcolm’s behaviour towards Grace in moments when he didn’t know what was triggering her (and she possibly didn’t know herself….although sometimes she did and he was still unsupportive) was incredibly stressful and difficult to watch and ultimately felt, for someone with the completely other perspective on ‘their story’ like a play about an autistic woman berated into becoming a mother by a selfish unfeeling man who only wanted to hear what he wanted to hear when she spoke, tried to squish her into a box of his expectations, and then nagged/bullied her when, being blind-sided into the position of motherhood triggered her unravelling.

A solution in future?

The question for me is why am I writing this and why does it matter in the scheme of well…anything?… so here goes, I’m going to try to explain my position on the difficulties of this story being told in this way…and the subsequent furore that’s been unleashed, it is unusual for a production company to want to tackle this subject so for that I have to say, good going to Kibo.  However the next step has to be the definite increase in information on the subjects of how varied (if similar in many ways) those of us who are diagnosed autistic as woman, because there were definitely cliched moments from Grace that felt like Rachel (the replicant, learning to be a human) in Bladerunner, also we did experience her as going from ‘meltdown to meltdown’ with not too much nuance in between (whereas we developed a rapport…in theory, with Malcolm) also her obsession with brown and only brown and her ‘other-worldliness’ a lot of the time made her seem like a hobbit or a wood nymph, we’re actually pretty textured multi-layered individuals and unless she’d led a wildly sheltered life (yes indeed, being raised in a hole in the ground) she couldn’t have been that mystified about everything, everything! about being human.  (as someone rightly mentioned on twitter in this discussion recently, adult autistics have learnt things, we learn things and adapt to some extent to get by in the world, we’re not just autistic children who stop developing there)

It’s beyond important to get woman and specifically autistic mothers involved in these discussions, I have an autistic mum but I’m not one, I know my own Mum would have had invaluable insights into the story of she’s have popped over to see it with us.

In good news there will be a Q&A panel about the play tonight actually, I was invited to attend and participate and would really have liked to but I’m unable to, the brill Paul Wady will be there…I suppose this has to be the start of many conversations on these subjects, I was invited to write a response because I feel passionately about this when I chatted with Leo from Kibo, as there is so much food for thought from the play and events surrounding it, this is simply a first response.

Just some thoughts on where we’re at as people in 2016

I have to say this ladies and gents, we definitely live more in a time of social media gone mad, than actual social communities, particularly for those of us that live in cities I’d say.  The media hasn’t helped over the last couple of decades, rather than encouraging friendships between people (because that’s just not ‘sexy’ and doesn’t sell papers) we’ve gradually been encouraged to be suspicious and mistrustful of other people, actually to the point of walking past other humans, vulnerable ones, on the streets, who are homeless because ‘they’ll just spend any money you give to them on drugs’  I know I’m generalising  about that attitude but as a society it’s something of a majority mindset.  We’re so disconnected in some ways, that when someone we are ‘friends’ with vanishes for a long time from FB etc./we don’t hear from them we just don’t think about it, get on with our own busyness/assume they’re busy and if something terrible happens we’re shocked and think ‘that was sudden!’  Here’s the thing, sometimes it wasn’t sudden, we’re just all too caught up in (and stressed with/focused on) our stuff to notice/have the headspace to think about it until something big happens, we all have to deal with too much stuff/information every day and our brains don’t have the headspace to ‘actively care’ too much anymore. A friend of mine, a wonderful humanitarian friend, who’s in her 70’s and who sees how much the world has changed/how much faster it is, and prefers a more personal approach to social contact (ie. we actually see each other, talk on the phone quite regularly rather than FB each other) communicated to me recently about how difficult people around us are having it at the moment, and it’s true.  Things are difficult for lots of us and have been for a long time, depression and other things are on the rise, and with political systems/public services that have not been there/competent to look after us all/serve us properly, for years now, it seems we’re either on our own or we kind of have to check in on each other once in a while…it’s just a thought.   This is quite long, I know, but it’s also important stuff, actual people are important, ‘each other’ is important.  Community existed once, people knew their neighbours, dropped in for a cup of tea and a chat once in a while, now we have Facebook and twitter, and make appointments on social media for phone/skype chats, let’s not get confused, social media should have been an add-on to person to person contact, never a replacement for the people who know us and care about us, and that we love or even just like lots.  Surely we all still have to try to think about that for ourselves. A friend of mine (and other people that I know) recently went under spectacularly and between a few of us, if we’d communicated more/had more information earlier, the signs were there, this was not an overnight thing however this was someone who didn’t/couldn’t ask for help, except for in the most cryptic ways, and there was an assumption that a) they could take care of themselves, and/or b) someone else was there for them/dealing with it c) also because of their condition they pushed some people away but it wasn’t because of who they were, it was because of their ‘condition’  This situation probably happens quite a lot in a manically busy world, it was no-one’s fault, none of us are experts and couldn’t have done anything, but it was shocking to some people as not many people had seen it coming.  The only thing I can think of to do, in the aftermath, is to share what was sad and traumatic and hope that it doesn’t happen to other people I know (and that they know and love, so social media can have it’s wonderful purposes…if anyone does actually read/share this…let’s face it, we’re all very busy)

I considered writing a status update about this subject but actually I’m massively long-winded at the best of times, and also this is connected to subjects I think I’d like to write on more regularly as it’s obviously a sign of the times, for lots of us.

On a positive note I know some brilliant folks who have started creative community projects tackling just these kinds of community/human issues which is exciting and reassuring – Leeds-based Tea & Tolerance https://teaandtolerance.wordpress.com are just one I can think of!    In conclusion guys and gals, I just have to say check in on each other, spare a thought for people you love you’ve not contacted in a while, buy a friend who’s having a bad week a cup of coffee occasionally, 2016 has been a difficult year so far on so many levels, for so many people and sometimes the people you think are doing the most fine are the ones that just find it the most desperately important to seem like they have it all together, because they find it hard to admit they’re having the hardest time.   I have to end this by quoting the Dalai Lama because he just speaks so much sense and because it’s a lovely relevant thought

“Compassion is not religious business, it is human business, it is not luxury, it is essential for our own peace and mental stability, it is essential for human survival.”