Autistic professional development initiative launches.

April 28, 2017 § 3 Comments

Press Release

The Museum for Object Research

– a project born out of an autistic practice.

– Press Release/ Phase 1

The Museum for Object Research has been granted Arts Council funding for research and development.

The Museum for Object Research (MfOR) launched on a-n blogs in 2014 as an innovative online forum for object artists to share resources and develop a network of like minded practitioners. MfOR quickly sparked the interest and enthusiasm of a core group of professional artists who form a unique community around object work as practice.

Objects as cultural signifiers and material memory comprise the artistic focus of the Museum’s work.

The MfOR blog was originated by artist Sonia Boué, who also leads the Museum’s pioneering initiative to create a template for her work as an autistic arts professional. Artist and educator, Elena Thomas is MfOR’s project co-lead and key to the development of MfOR in its current form.

MfOR is an inclusive collaboration, whose work on autistic leadership seeks to develop best practice outcomes.

We seek partners committed to inclusion and diversity for dialogue, venue spaces, and conference participation. We are keen to explore areas of intersection with other minority groups.

The culmination of this initial phase will be our Arts Council funding bid for MfOR – Phase 2. Exhibition, day conference, artists talks, workshops, publications and a project film are included in our plans.

MfOR is based in Birmingham, Oxford and online.

MfOR Team:

Sonia Boué – project lead/ artist

Elena Thomas – project lead/ artist

Simon Meddings – design

Sarah Mossop – curation

Laura Rhodes – film/ photography

Dr Jacqueline Taylor – research/ conference planning/artist

Kate Murdoch – artist researcher

 

MfOR Collaboration:

Sonia Boué

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Sonia is an autistic multiform artist, creative project developer and manager whose recent work includes a film collaboration with Tate Britain.

Her practice encompasses paint, assemblage, video and performance. Objects form the springboard for the many branches of her work, which is concerned with themes of exile and displacement, with particular reference to family history and the Spanish Civil War. A background in Art History and Art Therapy informs her practice.

Born in Birmingham to an exiled Spanish Republican, she grew up between cultures. Family visits to Spain during the final decade of the Franco dictatorship form the bedrock of her practice as she continues to unpack her grandmother’s handbag.

www.soniaboue.co.uk

Her writing on autism can be found on, The Other Side

Elena Thomas

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Elena Thomas is a multiform artist and songwriter, creative project developer and manager. She has exhibited nationally and internationally. Her work comprises textiles, installation, performance and song.

Her object inspired practice encompasses touch, both physical & emotional, and the traces of influence of one person on another that are implicit in the objects and garments left behind. Imagined narratives are manifested in the stitching and the songs.

She has collaborated with producer and songwriter Dan Whitehouse on her recent Arts Council Funded Nine Women project.

Her blog writing on Threads forms a large part of her reflective practice and can be found at elenathomas.co.uk

Exhibiting  Artists

(NB this project is about autistic leadership and contributing artists are not autistic)

Neil Armstrong

Sonia Boué

Dawn Cole

A very ‘neurotypical deficit’.

April 5, 2017 § 27 Comments

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This assemblage piece is a work in progress which I’m developing for a performance.

This post modestly observes that the deficit model for autistic people is neurologically biased. 

For me one of the clearest differences between myself and the neuro-majority is one of pace. In comparison my processing speed can appear snail like – but is this bad?

Generally, I like significantly less volume of input in my life than my NT contemporaries. And I’ve noticed that I like to go deep into the kind of ‘information bank’ I prefer.

In this state experience and thought tends to the profound and considered. Like so many autistics I know I go full on in and bask in the kind of immersion that generates my favourite state, that of flow.

Once in flow I turn what I’m handling this way and that. I see the object of my interest from many angles as I strive to understand it in perfect detail.

What I notice most is the NT habit of fast crawling (ant-like) in a purposeful direction over the surface of things (not saying that profundity is lacking but that the focus appears to be speed and reach). So there is a general hurry to move across the surface and to go wide extending outwards. New places and new connections are made endlessly it seems. They want more and more of this – so that the web of interactions unfolds exponentially, growing larger each day.

I’m talking about tendency with variation of course – there will be NT who like quiet and slow too.

But I hear NT reminding themselves quite often to slow down, go back to base and value the small things and the people who ‘really matter’. In a corner of perception NT know that they can tend to overdo it.

These are two vastly differing vantage points. And that is all they are.

I think this is a perhaps one very good reason why NT can seem to to ignore autistics and don’t quite register our presence.

I write the above in the context of World Autism Awareness Day 2017 – which being deep in a flow state – I missed!

But it’s been an interesting week.

As April rages on unnoticed in my immediate environs I haven’t seen much autism awareness on the streets of Oxford. Not one person I know has mentioned autism.

Zero.

In a way I’m relieved. I’m tired of all the misinformation.

Autism to me is a language and a culture. It’s my identity. But I am yet to fully realise that, or rather what that means in my life.

As the internet groans with blogs and videos, articles and debates this month, I turn to practical matters. I have to live in a neurotypical (NT) world. I have survived all these years. But I want an equal footing in this crazy scrambled world.

While NT life has powered on this week there’s been a quiet revolution in my autistic soul.

I’ve gone from feeling weighed down with the enormity of my task to locate myself as an autistic woman in a world that doesn’t suit my neuro-type, to feeling freed. Its as though I’ve absorbed another level of my difference and come into a clearing.

I know what I want because I have experienced what I want.

Miraculously, l’ve connected with a community of autistic women. This is a new kind of sisterhood.

And suddenly I have the information I need to understand the distinction between friendship and the rubbing along of convenient relationships that can so often masquerade as friendship. Those fickle, brittle ties that are quickly made and broken as convenience moves on elsewhere.

As I analyse this truth I begin to see that the trouble in truly grasping this before has lain in the mismatch of pace and intention. It is perhaps because NT are almost constantly engaged in a subtle form of mapping and networking that autistics can so often become confused about relationship.

NT like this practice enormously but (as an aside) it can cause no end of confusion in terms of purpose and getting things done.

Perhaps I’ve never seen it this clearly because the foil of autistic sisterhood was missing. Isolation from your group is clearly a bad thing from an informational point of view.

Without this knowledge of my group I have been less discerning, but I can at last see things more clearly as I discover more what kind of social shape my neuro-type fits.

I can suddenly see with 20/20 vision that in relationships of convenience (no matter how friendly they seem!) people don’t necessarily have my interests at heart even if I’ve been generous and giving.

So I don’t need to give all those breaks and benefits I tend to rush in with (autistic people can be unusually kind). I’m too helpful by nature and that is frankly exhausting.

Returning to the differences in processing with which I began my piece, it seems to me that as NT move speedily onwards to the next person and the next opportunity they may fail to notice many examples of autistic kindness.

What an unfortunate processing deficit that would turn out to be.

 

 

Did you just call me badass? Autism and identity – a list in progress.

March 17, 2017 § 13 Comments

Photo on 02-03-2017 at 15.35 #2I’m grabbing at thin air. My words plucked from a cloud in which a soup of experiences swill.

It’s true of all my writing that until start to pin my words to the page it’s as good as alphabet soup. Such is the autistic mind (in my case).

Contentious terminology was the subject of my last piece called When only autism will do, for which my favourite comment was a thank you for my badassery! This pleased me more than I can say.

So I’m back again at the coalface – or the cola face (as I just typed before correcting myself). Oh how I would like to be at the cola face right now – with my face in a cola. But I digress.

What I’m grappling with is self-definition but it’s all a bit drifty and hazy (the shifting sands of autism, to switch the metaphor).

But anyway – here I go (and the usual rule applies that I speak for myself).

I’m at an early stage of a late-life diagnosis which probably makes a quite a difference in terms of perspective. If I fall down in what I’m trying to say, I hope my kind readers will help pick me up, rather than throw rotting fruit. Which is kind of where I’m going with this.

So.

Yesterday I bought chips from the chip shop round the corner from my studios. Kaz, the charming chip shop owner (and as it happens extremely talented photographer) was feeling it. It being the weight of world events. He sprinkled some wisdom along with the salt and vinegar. I’m  getting old, he said (we’re roughly the same age). I’ve been mistaken all my life – and I’m praying for us to save ourselves from ourselves (referring again to global matters). I nodded, and left with a warm feeling (emanating from the chips probably) and the final golden nugget; the only thing that truly matters and can save us is love.

And swoosh! Into the sunlit street I bounced, past traffic and trees heavy with pink blossom, clutching the warm package of potato love!

I assume Kaz means self-love is important too. I hope so because I reckon it is.

But it is love in a wider sense (this is old fashioned I know) which I’m finding so missing lately. It’s been replaced by the kind of static you get from a nylon nightie pulled roughly over your head.  Shocking and hateful – or rather hate filled human expressions are what we find reflected in so many media outlets that there are days when you don’t know where to look. Not enough love it seems.

Amidst all this static I find myself with a daunting task – staying afloat and making sense of it all as a newbie autistic. I’d really like to find some clarity about who I am post diagnosis (haha! even my diagnosis of  Asperger Syndrome is contentious).

So I’m making a list I can hold onto, and if it helps anyone else in my situation I’m more than happy to share.

  1. I identify as autistic rather than Asperger’s.
  2.  Question: can I be seen, heard, understood and respected as an autistic person by others?
  3. Insight: 2 seems tricky especially as I don’t fully understand me myself yet.
  4.  Identity appears to shift in varying and wider contexts than my own four walls.
  5. The necessity of passing seems to affect 4.
  6. Neurodivergent (ND) as a term has both advantages and disadvantages.
  7. I’ve decided I like the bluntness of the word autistic better. I like the clarity and ‘shock’ value it brings. I vehemently dislike aspie and autie.
  8. I can be badass.
  9. BUT please –  if I forget my manners give me a nudge!
  10. Note to self. A bag of chips is only ever two blocks away.
  11. Further note to self. Try not to drown in world events.
  12. Because even numbers feel right.

 

 

When only autism will do.

March 10, 2017 § 25 Comments

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Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing. 

This post is about access and exclusion. 

It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.

And if you say thank you very much for all your kindness  but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.

This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody  – unless you fancy a nice slap down that is.

Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.

Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).

What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.

Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?

It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.

SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.

This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.

So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.

This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.

I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.

I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.

I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?

My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.

My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.

And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.

Autistic resilience: talking up competence.

February 25, 2017 § 18 Comments

Version 2

(Work in progress on the theme of resilience, © Sonia Bouè 2017)

This week has been rocky. I want to talk about anxiety.

Anxieties collide sometimes don’t they? Stuff can accumulate and escalate. World events, a health glitch, a seriously upset neurotypical (NT) friend.

(For the sake of clarity. I should stress here that my friend was not upset with me but rather shared their distress with me).

For an autistic person this can rapidly begin to feel ‘disproportionately’ dark.

What I mean is that for autistics the confluence of events within a short time frame is often what proves disorientating, and I’m trying to analyse the cause. I think that probably some of our anxieties are related to what I think of as imperfect information in the moment. I find this a useful phrase when applied to autistic styles of perception in a neurologically  biased  world. It’s the difference between playing poker or chess – in the former the cards are concealed during play and in the latter the whole state of play is visible throughout. In an NT world we’re playing poker.

I’ve added ‘in the moment’ to my sentence signalling the potential to disentangle events in time.  We are not incapable and we are not helpless – with enough space (and/or support) to do so we can process life’s social and emotional  vicissitudes in our own ways.

Autistics process sensory data and social interaction in a multiplicity of different ways from the majority neuro-normative population. This (logically) creates a very different bank of information from which to draw inference and make decisions for autistics. The world hooks up differently around another set of priorities.

But its even more complicated for us than just this – as this majority population is (of course) made up of individuals. Result? A mountain of permutations of ‘missing’ data for autistics to deal with in ‘real time’.

A literal mountain, which I’m going to call Mount Blank. Yes.

And it really is a BLANK until processing kicks in. This can feel like a dense fog laced with school girl dread. But I find that it’s often possible to simply push the feeling away and move on. We can be resilient like that. Perhaps we underestimate just how hard we’re working everyday to keep afloat in a world which does not support our divergent neurologies – and it is this effort which exhausts us.

But back to Mount Blank. Standing at the bottom can make you feel terribly small (echoes of my school days again). Perhaps this is why a series of unfortunate events within a short space of time have the potential to crush the soul – you are a child again. As the mountain of imperfect information grows it can feel as though you’re shrinking before it.

World events overshadow all out lives at present, but I think that for autistics it’s often the ‘micro’ incidents which stack up without us realising their impact.

And the causes of our confusion are not sensory or perceptual alone, they also lie in never knowing if people are saying what they mean – rather than just being polite, trotting out platitudes or worse. These habits of neurotypical obsfucation add to the scale of Mount Blank. Worse still (I might add) is being versed in this culture as an autistic. Oh the tangles! As you venture your polite falsies (as I’ll call them) and tie yourself in lying little knots.

And because no-one quite tells social ‘truths’, when things go wrong or just feel wrong (in the moment) there’s a  tendency to self-blame. Which is especially debilitating. I think this is the point at which self-compassion must intervene. Imperfect information flows from the majority game of choice and not the individual. Withdrawing from play (taking time for processing) and/or researching* the other player’s hand (many ways to do this including talking things over with an autistic and/or NT friend) are strategies  I would consider next time I hit Mount Blank.

But unpicking and thus identifying this pattern* has got to be one hell of a route to resisting it’s effects. Resilience is often knowledge plus practice.

The road to resilience is all about talking up competence – and this begins with me.

*autistic strengths

A foreign country and a bloodhound brain #autism

February 18, 2017 § 2 Comments

img_8675I wake up and I am in a foreign country.

I am not the same shape I used to be. Literally I am heavier – when for decades I was almost too light. Fearing perhaps to occupy too much space. Now I am more certain (though still hovering) and there is more of me it seems.

But this is not the only change.

Each day I wake and stumble to my laptop. News. Views. News.

Click…click…click.

Are we near to armageddon? How near?

I follow trails – endless trails, down endless rabbit holes it seems, which echo with endless bile and all that political chatter. Not idle. No. But quite quite mountainous.

And yet my ‘unusual brain’ (a bloodhound of sorts) hunts on (and on). Seeking patterns to arrive at meanings. This time predicated on fear.

This is what I do. What I was born to do. With a thirst to know.

But it occupies me. Engulfs me. And I was warned not to.

And this is how I come to be in another country – not close but distant.

But somehow the change in me is greater, although you could say that extraordinarily the axis (internal and external both) are spinning (not turning) simultaneously AND in opposing directions. SO that the largeness of it all is rather more than faintly disconcerting.

The shape of me, the shape of IT. IT being a world mediated through the click, click, click of my machine.

Important to understand that the physical spaces surrounding us have not changed. Though they may yet. When bins are not collected, when welfare ceases to exist. When UK becomes officially FU (FUCK YOU) and goes it’s separate ways.

In the same way I don’t want my country to be chained to Putin or his puppet Trump, I do want to live and preach autism as identity, culture, freedom and a right.

What shape is it though (this autism I mean). What shape am I?

And here I am my best friend. My bloodhound brain. Will. Sniff. Sniff. Sniff. Until I know what and how to be.

It is happening – both inside and out. The revolution is coming.

How terrifying and extraordinary (both) to be living in this moment. Of personal discovery and political threat.

I watched a brilliant Up Front programme on Al Jazeera called, The rise of populism: Should we be worried?

My take out is that we can no longer take many of our fundamental rights for granted. In truth disabled people NEVER could.

ACTION is required. And yet it always was. It simply means I. We. Will have more company.

In this sense my timing is good. I. We. Those among us who believe equality of human rights must begin to define ourselves, own who we are and occupy more space.

My search for meaning. To understand. Is yielding results.

No, no. This is not me being engulfed. It is research by immersion.

Autistics own it.

Kick that talk of ‘obsession’ – this is how WE work.

Landscapes of Resistance #Resist

February 7, 2017 § 2 Comments

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Work in progress in my studio.

(This configuration is almost accidental and will change – the hanging doll at this stage has no clear meaning)

How to deal with the political emergency in the so-called United States of America?

I’m working on a funding proposal which means I’m online a LOT. Application is online, I also need to liaise with my collaborator – and then there is pinball brain. The brain I’ve written about before.

And so I click.

And so I see, and see. I read and read. Acres of online print – the Tweets, the links, the lot. I’ve used up my free reads on The Nation and the New York Times, I’m following dozens of US journalists. My need to keep up is voracious.

I question my motives. Is this obsession. Yes. But it is also work for me.

I am understanding at first hand what fascism looks like and how it grows. It’s a crash course in this digital age, and the unresolved hows and whys of European history in the 1930s and 40s are suddenly revealed.

A generation is waking up though we don’t sleep. We’re getting it.

And as I click I see also that resistance is rising. My work is a vigil – like all my other vigils. I am watching. Waiting for justice.

As an artist I do what I can. I march. I make. I write and publish these thoughts.

My laptop and my studio form the sites of my resistance.

Yesterday I made a start with some sketches on improvised boards.

Today I bought 12 canvases for a new installation to be shown in May. I have my work cut out to produce a series which will be called Landscapes of Resistance.

It may not seem much. But it’s all I have.

Where Am I?

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