April 28, 2017 § 3 Comments
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.
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
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.
Her writing on autism can be found on, The Other Side
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
(NB this project is about autistic leadership and contributing artists are not autistic)
April 25, 2017 § 14 Comments
Yesterday I learned a great deal about being invisible as a socially engaged artist – in the context of intersecting minorities.
I am an autistic white Anglo-Spanish woman of middle age. My current project in collaboration with Elena Thomas; The Museum for Object Research, does not on the face of it seem concerned with the kind of social and political issues that characterise my practice. The group concept is one thing but our individual practices are another. Social engagement is woven in to what many of us do.
As I arrive in a very particular context to speak to potential parters I’m confronted with the full force of a fundamental project truth. Our project is white, though not without a core of significant diversity. I knew this – but stepping out of Elena’s car I knew it in a more immediate and profound sense.
Our whiteness as a group is accidental – but we must own our privilege and understand this coincidence as part of a wider privilege in the arts, and of course globally. We must own it and act responsibly.
As I surveyed my surroundings I drank in the crumbling Victoriana and sixties high street design with zest. Unlikely juxtapositions that shouldn’t work, that don’t work – but are fascinating when seen in relief. This is history made visible, laid bare.
A nearby mosque, kids on the streets and cars piled up on the pavements crammed along side roads, while the main artery rumbles with heavy buses heading to half remembered places.
This is an area of Birmingham – a city seemingly in a fit of constant reinvention to the point of frenzy. My old home town.
I experience this autistically – knowing that my love for this moment would be considered intense by many. All day I have been touching the edges of an unknowingly autistic childhood. I have stepped into memory like Dr Gloucester – up to my middle – as a series of tangible intrusions.
In another part of my brain, I register my whiteness as an exclamation mark. I feel my autism thus most often – have I let it eclipse my whiteness as I reach deep into a newly discovered identity?
I gather my senses for a meeting. Quickly I must adapt to strangers. This is my autistic challenge – to follow the conversation and decode it in the moment, to sense the tone in the room and become it, to pass as a typical neurologically privileged human. My act is now second nature with aftershow fatigue as the encore.
I have done this now so often. I know how it will go. I will appear as a privileged white woman of middle age and middle class – articulate and lively (unless my energies run down, unless the room fractures through light and sound input, or I am suddenly too cold. Unless, unless…) Unless my words fail.
But I have measured my journey to this moment carefully, I have conserved my faculties (just) by planning. Only my collaborator knows this, and she knows too that my way in to this meeting is for her to lead, while I find my feet.
We talk pleasantly – I find my moments of entry as Elena carries the conversation. But there is a question of fit, of specific community, of reaching hard to reach groups. Yes.
I see it of course – we don’t fit, which is fine. But I won’t be unseen in my struggle. I gather my courage and my moment comes to say to a small group of strangers – I am an autistic artist.
I explain the roots of this project in my autistic practice, and my funding from Arts Council to make a professional template for my work as project lead. My voice almost leaves me but I hold on.
I am met with blank faces.
We talk some more – the topic is back with our hosts’ agenda. This is of course fair and proper. We are in their space.
But I can’t leave this. I have to ask about our intersections – autistic and black, Muslim and autistic. I am met with a level of confusion – I’m told hesitatingly but in so many words that autism is associated with children and is a stigma among these communities. I nod. It’s a hard sell, I say.
Another level of my privilege. To have an autistic community and access to the current wave of thinking on neurodivergence.
I hold my breath and think about my people.
Did I imagine it or did my voice become a little monotone and robotic as I edged across the tightrope of my disclosure?
As I became visible did I become more stereotypically autistic – did I do something so subtle (I have awesome camouflage and acting skills) as to act up to my audience expectations of an autistic person?
It is highly possible, as my finely attuned social calculator calibrated their responses – or lack of them.
Would they now be looking at me anew?
Of course they would. And with somewhat more curious gazes.
I come away with some serious questions. How can our museum become inter-sectionally inclusive? Am I engaged enough with the whiteness of my autism? I want to turn my coat inside out and show you the seams of my difference – my many differences – which like the buildings around me on that windswept afternoon in Birmingham lay bare a history.
This is research at its best. These are the dialogues we must share.
My thanks to our hosts for their input to MfOR R&D thinking and to Elena Thomas for her part in this enriching process.
April 20, 2017 § 5 Comments
Yes, we do have power. My post is not a simplification of wider more intractable structural power imbalances which work against autistics, but rather seeks to address a specific area in which power may be regained.
Society tends to ignore the contribution of autistic workers – both employed and potential workers (for many of us it is said are unemployed largely due to the myriad complications of ableism in our lives). Visible autistics are often cast either as recipients of charity in the workplace or as tech trojans, maths professors and sundry geeks.
There’s also a galling new trend to laud autistic workers (with the help of stereotypes) as work-horses. Honest as the work day is long! Give them a repetitive job and they’re happy! Accuracy means productivity! Wink, wink! Employ an autistic!
I’m very glad people are getting work, don’t get me wrong, but we have a long way to go because so much of this is predicated on neuro-normative thinking – but I better stick to what I know and talk about my own case.
I believe that many of us probably form an invisible workforce, whose skills can’t easily be replaced by others in the market place – because they are not autistic. We are both employees and freelancers – some of whom may also create opportunity or employment for others. Our brains work differently and often originally – we can gain recognition but also do so for others by association, or more darkly though imitation and appropriation. Subtle use of autistic smarts by neuro-normatives is a thing in the creative sector – conscious or not – and it has to stop. We often do not receive recognition or added value for what we bring to the job, in my experience. Neurotypicals can be slow to grasp the deep benefits autistics bring to work, and overlook them as the players they are or could be. Cultural deafness to autistic smarts, and lack of access to the rules of the game are often to blame. This is what must become transparent.
In some sectors – we’ve gained a curious market value but this does not necessarily filter down to us. Inclusion in the arts is hot, for example. We are, in bald capitalistic terms, currency. Our presence in a organisation or on a project can be valuable in terms of funding (invisibly) because we are autistically good at what we do, and (visibly) because we help tick boxes. Boxes mean cash, and thus we are in the narrowest sense ‘tokens’. We may however be used as token autistics unless we watch our backs and realise our market value, and unless we also assert that our market value must be linked to accommodations. This is really the key to what I’m trying to say.
To hook all this together we need first to identify pattern and causation and call time on certain practices. The nothing about us without us motto works so well at every level of our engagement with co-workers and organisations. I have begun asking where the accommodation is, and doing so in open forums when there is no obvious alternative open to me. Social media is one good forum I’ve found for teasing out hidden code and asserting value.
This is not passive aggression – it is the use of accessible platforms for autistics. If the social codes and means by which they are passed on are hidden to us, we may have an option to use open channels when we judge it is safe for us to do so. By which I mean – minimal personal comeback and maximum gain in clarity.
In many cases I’ve been fortunate in finding true allies – but making visible and engaging in ‘clear-speak’ can be effective where commitment or understanding has been less obvious. In the arts at least, people must be seen to be accommodating – SEEN being the operative word.
I believe it is time to stop talking about inclusion or access in neuro-normative terms altogether, because we need less warm fuzz and more hard outcomes. We have to define this in our own terms. We can’t wait around to win the info war on autism to make a living. We need our jobs and our projects to pay us fairly and not kill us in the process. SO what can we do?
Well, we have some serious bargaining chips in certain environments when we find the means to assert that our skills create outcomes (autistic smarts make for invaluable contributions and demonstrably so). Similarly so when our presence as autistics brings in monetary value to organisations in terms of funding. This we bring to the table, thus we must gain at the table. I don’t want a place I can’t use or decode from – I want an accommodated seat where I can be acknowledged and equal.
I am learning not to be confused by the mere appearance of friendliness or put off by other people’s agendas. I’m late diagnosed, hell it’s time!
April 8, 2017 § 8 Comments
Photograph of Sonia Bouè’s Refugee Stack, 2015 by stardaffs.com
SO, something happened.
In collaboration with my trusted colleague Elena Thomas (artist, song-writer, performer and educator), I have asked Arts Council England to support me in creating a document to outline my needs in the workplace. They just said yes! This piece of paper (or more likely powerpoint, video, series of poems, and – oh yes a handy list!) will be my ramp into neurotypcial spaces as an autistic arts professional.
All workspaces are the wrong neurotype for me. All of them. No invisible ramps exist for invisible conditions that I know of. So we have to start talking up visibility and making change happen.
Alongside the challenges of my autistic difference in an often hostile world, I have co-morbid conditions which present me with further obstacles to access. A restricted diet due to functional gut disorder, severe contact dermatitis, and Raynaud syndrome are on the daily menu. I must manage my energies and environments with the greatest of care, and commonly found canteen fare, air con and synthetically perfumed environments can act as enemy agents sending me into a spiral of ill health.
I need control over working conditions but as a freelance this is often a difficult and sometimes impossible challenge. My professional template will be designed to turn this around. A personal breakthrough in managing my conditions has been to gain a diagnosis of autism – at which I learnt that they come with the territory. They’re not autism per se but they come as an attachment and form part of the package.
What this does (in practice) is to bring this trio of troublemakers to heel. I click my fingers to round them up, and we become one. Autistic + co-morbids is the deal with me. I require detailed and specific accommodations in a complex and fast paced milieu – ie the arts!
But of course it is autism – and the myriad disadvantages faced in a neurotypical working context I hope to tackle head on. This is no add-on or postscript to my project. It is the core of my project. If I am to lead and create opportunity for others (my project brings employment among other benefits) then my team must come with me and I feel so lucky knowing that they will. Too long have autistics tagged along or even had their work exploited. Together we may just create a pioneering model.
I feel empowered and grateful – at last I have a way of gaining some leverage and intend to share my learning with other autistic artists who may also benefit.
So how did I get my funding – how did I make this opportunity happen?
- Teaming up with professional and trusted neurotypical allies has been key to this process.
- I have now spent two years of my professional life learning my way around the lower tier Arts Council England Grants for the Arts funding application process.
- Through the combined autistic skills of hyper focus and hyper connective thought I can create effective, coherent and strategic funding bids.
So in addition to my own work, I’m now in a position to offer a consultancy service. I can help to analyse and structure a proposal for a GFTA bid (currently at £15,000 and below, and in the near future for higher tier awards) for individual artists and small organisations. My skills are not limited to autistic/ neurodivergent artists & organisations but this is a specialism.
My services can be hired at an hourly rate, and I can be contacted at firstname.lastname@example.org for more details.
March 27, 2017 § 13 Comments
Some autistics prefer person first language (though many sources suggest this is a significant minority), and some individuals and organisations use both person first and identity first language in an effort to compromise. I believe the latter is unhelpful in tackling stigma, while an insistence on person first language unwittingly perpetuates it.
This post takes as read the equal value of all human life in its infinite diversity, and the neurologically driven right to self-expression for us all. I won’t use functioning labels or talk about co-morbid conditions associated with but distinct from autism.
Autism is understood as a viable neurological difference with a distinct culture. Our contributions to the mainstream are significant but often overlooked. We face prejudice and barriers to access at all levels of social engagement and opportunity.
Blogging about autism sometimes feels like being suspended above a battleground on a rope bridge. The warring factions are often parents of autistic children and autistic adults. Like many other late diagnosed autistics I know, I am both. Other parties such as charities and research bodies (those not autistic led) tend to fall into the same camp as many non- autistic parents. In general, thought on language about and priorities for autism are driven by the non- autistic majority. There is still genuine discomfort in accepting identity first language and allowing the primacy of autistic voices in on the contemporary debates about autism which (crucially) lead policy, resources and research.
When I first dipped into the world of autistic blog writing (as my parent self) I was astonished to find so many adults writing. I hoovered up their words and gobbled them down. For something like four years I read everything I could by autistic adults to find out more about my child.
In the end I found myself. This in itself demonstrates the value of autistic voices – through each other we find ourselves and are coming to the fore.
Perhaps this is why I avoided conflicts (mainly). Occasionally I’d catch a bruise and glimpse the fray. I was a parent but I could see it all so clearly. The adults who wrote generously and eloquently about themselves were my child’s future – and I hope that now perhaps I can be part of the movement for change too.
I want to feel that my voice will count in this struggle for autistic voices to lead. Parents matter greatly ( I’m one – I know) but ultimately only autistics can speak from within about what it means to be autistic. This is bio/logically so.
Yet the spaces between us echo with arguments I can recite in my sleep. Person vs identity first language is a prime example. It is highly symbolic of the struggle for primacy but also an acknowledgement of autism as culture (as a viable neurological difference).
To each group the position on language seems clear. The other day I encountered a non-autistic person who thinks identity first language is rude to their autistic relative.
From this perspective using the word autistic denies the person and puts the focus on disability. (You can only really think this if you hold a negative view of autism and what it is to be an autistic person.)
This non-autistic person also thought it was okay to insist identity first language is insulting.
Personally, I think that was rude.
So the question is how to duck the ire and shift such barriers between us. Momentarily stumped I rewound my brain and located a now distant memory. And sure enough there was once a time when autistic was a harsh word to my ears too.
I reflect that it can sound abrasive (but only if you let it).
THAT IS THE SOUND OF STIGMA. And this is why it matters, and why we need to own it.
We have to get over the stigma to move beyond it. If enough of us use and reclaim the word we can make the kind of hard won advances we’ve witnessed for LGBTQ+ communities.
This is why we push the point and wear identity first as a badge of pride.
I’m not surprised that I’ve come to love the word autistic. No. But I can still (just about) retrace my journey.
Something happened to me as I grew closer to my community – as I grew into my autism – I found I no longer understood the person first position. I’m simply an autistic person at core. No add on autism, just autistic.
I’ve come so far in my travels that not using identity first language now seems the abrasive option. The with autism thing has become impossibly silly to my ears. As in, I think I’ll nip into town with my autism (hope I don’t lose it like those gloves I lost last week!) Foolish I know…
But that’s the trouble. Significant interest groups still experience the word autistic as too harsh and problematic.
I’m trying hard to understand all this as April approaches. I need to see a way through it. What I’d most like is progress through decent conversation. Don’t we need deep engagement with these ideas rather than huffy stand offs?
So as April comes around again I’ll get into brace position for #AutismAwareness, which in my experience is a month long assault course of mainly person first campaigning. Autistic voices work hard to insert their narratives – I’ve often joined in but this year I have no heart for it.
I want no part of this as an endless argument culminating in a mute or block on social media. It’s just too depressing.
So this April will be about the positive small changes close to home rather than the big picture out there. I’ve come an awfully long way but must own that it’s taken a very long time to get here. If I can make just one person stop and think this month it will be good enough for me.
March 17, 2017 § 13 Comments
I’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.
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.
- I identify as autistic rather than Asperger’s.
- Question: can I be seen, heard, understood and respected as an autistic person by others?
- Insight: 2 seems tricky especially as I don’t fully understand me myself yet.
- Identity appears to shift in varying and wider contexts than my own four walls.
- The necessity of passing seems to affect 4.
- Neurodivergent (ND) as a term has both advantages and disadvantages.
- 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.
- I can be badass.
- BUT please – if I forget my manners give me a nudge!
- Note to self. A bag of chips is only ever two blocks away.
- Further note to self. Try not to drown in world events.
- Because even numbers feel right.