I love an epiphany!
God, being autistic is sometimes an absolute blast. I get to peel back layers of a life time’s accumulation of faulty learning and go, wow! so that’s how it really works…
Recent adventures have got me thinking about ‘social disability’ as an important addition to the terms I can use to help articulate accommodation needs. This could be a sensitive term for some, so here comes the bit where I make the usual disclaimers. As ever in my writing I only speak for myself, and please remember that when you’ve met one autistic you’ve only ever met one autistic.
The point is (however) that each autistic has to work things out for themselves. We mainly have no such thing as aftercare following an autism diagnosis. I’ve been through many a recalibration of my identity since my official diagnosis in March 2016, but my love for the word autism has never wained. I was luke warm on the term neurodivergent for the longest time, but have recently cosied right up to it – it’s so useful and brings much needed solidarity with a wider group. I’ve got a lot of affection for the term invisible disability, but rarely remember to use it (note to self to do more of this). But in almost mint condition is my sudden mental adoption of the term ‘social disability’ which I’m test-driving here. I’m excited by it mainly because I feel the need for clarity and specificity. This is about refining and recalibrating where I am 4 years on from my diagnosis and readying myself to meet new challenges.
It’s taken 4 years for me to absorb that I can never fully compensate for my autism with workarounds, accommodations and self-care. There’s no magic neurological catch-up or compensation that can level out the playing field (ergo it’s the playing field that needs to change, by the way!) I HAVE A NEUROLOGICAL CONDITION ( which affects me in many ways) as well as an identity to forge – and for me the two must go hand in hand.
The penny has finally dropped. It doesn’t matter how much learning I do, or how much I am accommodated, I will remain at core disabled by my hyper intuitive and sometimes scrambled navigational systems. This insight, by the way, does nothing to negate my autism positive position – I see autism as both disability and identity, and find no conflict in this position.
I feel great joy at being me, I love myself and my autism quite fully, right up to the brim in fact. But I will forever spend my days in hostile environments following norms I can’t ever hope to understand. I will always need to use my native intellect and find the will to be assertive and seek adjustments, but I need more than this. I NEED IT TO BE UNDERSTOOD THAT I AM RADICALLY SOCIALLY DIFFERENT – AND THAT I DON’T WANT SUPPORT TO APE YOU OR OPERATE LIKE YOU (if you are a non-autistic reader). This is not rudeness on my part, I’m talking about neurologically based social orientations and needs.
I do a lot of writing, thinking and advocating about autism and the arts, and I encounter a lot of artists who are autistic and struggle with the question of how to place themselves in their professional lives, and in the art world as a whole. There is no such category as ‘autistic artist’ that would fit us all – as stated above, once you’ve met one of us you’ve only ever met one of us. So what kind of beastie are we, and where do we fit, if at all? What does it mean to be an autistic artist?
We return to the conundrum of extreme diversity within divergence, but I believe we can perhaps haul some commonalities out of the possibly infinite variety of minds, though of course I can only truly speak for myself.
A social difference that’s disabling and is life long means the building blocks of learning have been (and will continue to be) different. THIS DOESN’T GO AWAY. Our thinking can run so counter to the non-autistic that we can feel alien even when we appear to be joining in and on side. We’re conditioned to mask our difference and often don’t know how to drop this adaptation. We can also find many points of joyful and genuine connection, but it takes colossal effort on our part to ‘make it’ into the room. Once there, we may well have no idea how to network and ‘makes things happen’. We can learn some of your tricks though kindness and information sharing, but THIS TOO DOESN’T GO AWAY.
So what’s my vision, and what does focusing on the term ‘social disability’ gain? I feel this would be suitably radical and risky. Talking about social disability is usefully uncomfortable and revealing. We reward neuro-normative sociability with popularity and power and we judge those who can’t perform it. In doing so we must sometimes confuse neurology with personality – neither should be judged, but disability is a protected characteristic and requires positive action.
Accommodations are vital, but so is culture shift. Please understand that I don’t want a leg- up to join the ranks, I want to break the current neuro-normative socially biased mould. I feel social disability as a term enables me to pinpoint a very particular aspect of my struggle as an autistic artist. At the forefront of articulating and carving out autistic space and power is where I want to be.
2019 has been a game changer.
I saw the year in with the mighty NUNO (Neither Use Nor Ornament) project, the culmination of two Arts Council England awards to research neurodivergent (ND) leadership whilst delivering a stunning group exhibition in March with some of my favourite people on the planet. This is the beauty of self-led projects, people! You can catch all the action and the artists’ work here.
I’m so thankful to all of the artists for their creative work on NUNO. Susan Kruse, Hugh Pryor, Katherine May, Naomi Morris and Sonja Zelić, also contributed majorly behind the scenes.
I’m also grateful to have had the most wonderful local partners for NUNO at Arts at the Old Fire Station (AOFS) and OVADA, which enabled me to deliver something truly ambitious accessibly. A big thank you especially to Sarah Mossop and Lucy Philips on this score. I’m delighted to be a supported artist at AOFS, and associated artist at OVADA.
Another huge shout out to my WEBworks mentors Miranda Millward and Sarah Mossop is in order – they moved mountains for NUNO and worked so flexibly around my needs. Miranda is now engaged in groundbreaking work at the Iffley Academy School, Oxford, featured in the Durham Commission Report, and also developing her own art practice. I watch with excitement and awe! You can find her beautiful collage work on Instagram @scissorspaperpaste
NUNO succeeded in creating an authentic model for working across neurological types – a particular passion of mine – and I’ve been delighted to continue developing aspects of this model in collaboration with Birmingham Open Media (BOM), both on the Propellor Project and in supporting a new intake of ND Fellows. It’s been hugely rewarding to provide consultancy for funding bids, and to be part of a team invited to seek further funding. Props to Karen Newman, Chloe Lawson and Louise Latter. Watch this space!
A family crisis in mid May listed this freelancer’s ship for a while. I’ve had to work out how to keep work and a creative practice afloat when life takes over. It’s been a work in progress, much assisted by the help and understanding of my colleagues and collaborators – so a very heartfelt thank you to you all! I feel privileged to be involved in so many projects with a caring ethos.
My film commission for the AHRC funded Playing A/Part Project is now fully underway as I edit footage taken in the academic year 2018-2019 at Limpsfield Grange School. I’m so grateful to Professor Shaughnessy and Shaun May at the University of Kent for opportunities to showcase both aspects of NUNO, and Playing A/Part works in progress.
I couldn’t have predicted it but the impact of Playing A/Part on my own practice has been seismic, spawning a new creative project called This Mirror of Mine. My research into Arts Council Funding now includes a Developing Your Creative Practice (DYCP) application, which I’ve begun documenting on my new A-N blog and Instagram. This has set off my social justice antenna and I’m keen to highlight that the 10% success rate for DYCP applications which is almost half of the 2015 success rate for applicants to Oxbridge.
I’ve blogged that applying for DYCP is of professional development value in and of itself. As an artist it’s an opportunity to design the perfect ‘strings-free’ project and to engage in ambitious thinking. In seeking endorsements you may find your best self reflected, which can be incredibly affirming. I’m so grateful to Jeremy Spafford, Director of AOFS, for such empowering words and for telling me what I didn’t myself know.
‘Her generous, collaborative and assertive engagement with us has made a big difference to how we work.”
The opportunity to take up an A-N Travel Bursary to the Istanbul Biennial in September was a particular bright spot. Being invited on the A-N Artists Council delegation proved both huge fun and inspiring. To say that I met the best people would be an undersell, but I don’t want to sound like the ‘orange peril’ so I’ll leave it there! I loved it all. So huge thanks to all the artists on this trip, especially the Istanbul Rebels and my partner in queue jumping – you know who you are! Such trips are a joy and a precious resource. I’m going to sound greedy but, more of this in 2020 please!
Istanbul was followed by my appointment to the A-N Board, a huge honour and truly humbling all at once. I’m excited to take on this role with such a diverse and prestigious team. I’m in it to learn and to contribute to the max! Props to A-N, and to the brilliant Julie Lomax for personally providing accommodations for my participation at Board meetings.
In November Instituto Cervantes, London, commemorated the 80th anniversary of Spanish exile in the UK, and I was thrilled to be invited to present some of my work to an audience deeply invested in this history as either a family member of an exile, or a specialist on the subject (often both!) This wonderful event proved a catalyst to create my own commemorative act of reviewing and showcasing (as an Instagram story) six years of practice responding to this subject as both a family member and specialist. I can’t recommend this type of review enough! So much good has come from it, including finding exciting new artists working on the Spanish Civil War, and gaining new insight into my practice. I’m invigorated and inspired, and I’ve been enabled to renew my commitment to the memory of the exiles.
My ongoing collaboration with the Shadowlight artist Richard Hunt received a major shot in the arm as the Shadowlight group celebrated their 10th anniversary with a major new Arts Council England award for LUMINOUS, their most ambitious project to date! Huge congratulations to the Shadowlights, and bring on 2020!
It was a 2019 highlight to meet the fabulous Dr Dawn-Joy Leong and Peter Sau on a British Council funded delegation from Singapore in late November. The three of us talked so enthusiastically in my freezing studio that we forgot to sit down, and I never quite made it to the kettle despite many offers of hot drinks. We then processed to FILMOxford for further talks with the Shadowlights. I could live from the incandescent glow of this meeting for quite some time and look forward to continuing our conversation remotely.
As I look back on this year I’m happy to have come through some tough times and succeeded in keeping the wheels on the freelance bus without dropping the quality or commitment of my engagement with the many strands of my practice, despite some truly wobbly patches. The game’s changed because I now add carer to the list of my responsibilities, and because the Conservative Party has just won a majority in parliament. The challenges of keeping a creative and socially engaged practice going just got greater, but this also means that it is more needed, which spurs me on.
I’ve ended my year with a new project idea to connect ND creatives nationally, called Beacon. The project is still forming as I write, but it will happen! Watch out for some heartwarming community action, signalling identity and hope in 2020! I’m indebted to Sonja Zelić and Dan Thompson for helping me develop this idea.
I want to conclude my review by saying that there are things I hope to do better but some things which will forever remain works in progress. As an autistic person it is difficult to generate the social glue that cements both personal and professional relationships. Yet relationships are vital to ensuring freelance work continues to flow. I want to thank all of those people who meet me half way, and who don’t mind when I’m absent for months on end only to turn up in their lives at random with the latest bright idea! It’s the in-between stuff I find so difficult, and when people get this I can be my best self. When I’m with you I’m with you 100%.
A final heartfelt shout out goes to Binita Walia my A-N Istanbul twin, who is also my top online engager this year. Thank you all for your support over the year and for reading my review!
Video still of a performance with Arts Council England funding forms 2017-2018.
Autistic author and poet, Joanne Limberg, has described this blog post, first published on WordPress, as essential reading. So I’m sharing it here too. In many ways it belongs more properly in this space – though I am more used to sharing autistically at The Other Side.
I’m autistic. It’s my job to be anxious. Being anxious is one of the things I do best, so I’ve done some good worrying about some of the more recent approaches I’ve experienced from arts organisations who I am not in partnership with.
I’ve started to fear the spectre of tokenism towards neurodivergence in the arts and worry that the direction of Arts Council England’s (ACE) 2020-2030 strategy could even unwittingly fuel such a development. I’m also worried about artists funding in general and for neurodivergent artists in particular, a concern which runs though my piece.
I believe that good practice for working with and supporting neurodivergence in the arts is emergent and there is much to be hopeful about in the coming decade. But I remember reading ACE’s Shaping the next ten years draft strategy document at the consultation stage and wondering what its shifting imperatives might lead to, including the possible contortions on the part of those seeking funding to fit criteria set by ACE. I’ll need to go around the houses to give the context for my specific misgivings regarding neurodivergence, but bear with me and we will get there in the end.
Since completing my own ACE funded pioneer support project for neurodivergent artists earlier this year, I’ve had cause to wonder how the new imperatives might translate at the funding interface for others? What effect might they have on potential applicants? And what of those whose practices and services won’t ever be recognised as “relevant” by ACE but are nonetheless meaningful and valuable?
Cultural historian and commentator on the arts, Robert Hewison, wrote an article A strategy for self-preservation, in Arts Professional, critiquing the Shaping the next ten years strategy thus,
“…it seems Arts Council England (ACE) intends to achieve a transformation from a country where ACE exists to help the arts to one where the arts exist to help the Arts Council.”
I admit that aspects of the document were perplexing to me. Should we now call ourselves creatives rather than artists? By which logic, what of Arts Council England as moniker! Time for some expensive rebranding, perhaps? Must creatives now also primarily seek to become agents of social change to achieve funding? What about the artists whose mission it is simply to make great art – which incidentally the sector/industry relies on? Can we as artists be expected to do all that is required by ACE without becoming something else in the process? I can speak from experience on the latter.
A paper by Susan Jones, The chance to dream: why fund individual artists? lays out the current disparities in the ACE funding system and the paucity of direct funding to artists, without which (I repeat myself ) the sector would dry up.
“The decline in volume and value of direct funding to artists from ACE is unambiguous. Notably in 2009/10 fewer than 2.5% of artists were directly funded by GftA, but by 2013/14 this reduced to less than 1% with DYCP showing a further decline.”
For those who don’t know, Grants for the Arts (GftA) now replaced by National Lottery Project Grant (NLPG) is a general sector pot. Artists must demonstrate audience engagement figures and provide match funding in order to get NLPGs, as well as making the ‘creative case’ for diversity. In my experience the effect on an arts practice is to develop invaluable project management skills (among the myriad benefits) but to lose out significantly on time to make work. Developing Your Creative Practice (DYCP) is a ‘no strings’ award designed to address core NLPG barriers for individual artists. However, DYCP is a tiny pot with only a 10% success rate for applicants, I’m told. The subtext in all ACE’s material on DYCP is that it’s almost impossible to gain this type of funding. I worry. What kind of message does this give to artists!
The stipulations within the previous GtfA, and current NLPG, have already shaped applications and had an impact on what’s produced within the arts in recent years.
In future to achieve funding applicants will need to demonstrate “ambition and quality”, “inclusivity and relevance”, “dynamism and environmental sustainability” – if you can decode what this actually means in practice. As an artist applicant it can often feel as though you’d better offer to tap dance on the roof too – the list of promises made in an application can be legion. You begin to see my point about contortion, which is an especially serious one if we’re to consider the artist and the sustainability of creative practice.
Is, as Robert Hewison seems to suggest, the tail wagging the dog?
So I’m frankly worried about a possible rash of quick-fix funding bids and tokenism at an arts organisation level too, because I’m not sure all are cut out to be ACE’s agents for socially engaged creativity (however laudable and desirable this would be in practice). Also, because I now provide pockets of sector support in this area I know how intensive and specialised the work of building authentic, robust, and meaningful programmes/services for neurodivergent communities can be. I’m immensely lucky in my partnerships, but am also sometimes approached in a tokenistic manner, which is how I know.
Specifically, in the case of neurodivergence then, I must ask where the knowledge base is for working with us? Further, how can the sector provide services that represent a good investment of public funds without such a resource, which I would add should be self-led. Until that knowledge is acquired and those relationships have been built how can arts organisations do the deep learning that’s needed? Enter Jon Adam’s long and at times painful mission to fund the Flow Observatorium hub in Portsmouth as an example of self-led/user-led organising to fill the gaps in sector knowledge and provision.
Interestingly for us ‘next frontier’ marginals – the neurodivergent – Shaping the next ten years coincides with our gradual seepage into mainstream conversations about diversity in the arts. Hence the arts are now peppered with references to neurodiversity, which in itself should be a welcome development but with which I sometimes find myself at odds.
My heart sinks knowing that uninformed bids, featuring neurodivergence, are quite possibly sitting in the Grantium portal as I write. You can understand it. We’re now more visible. I often see neurodivegence tagged in the growing lists of marginalised identities, which is lovely but at this stage of our evolution into public consciousness is often shorthand, or a friendly nod.
What a well-intentioned temptation it could be to throw in support for neurodivergent artists (for example) to strengthen a bid’s “relevance” without understanding the first thing about the need for tailored programmes/opportunties and relational work. I want to write it large, you can’t just offer the same stuff in the same way – the thinking and design around what we need has to come first and can’t effectively be bolted on afterwards.
I worry too that the imperatives for ACE “relevance” may (albeit unwittingly so) create even more barriers for the neurodivergent applicant. I could write reams about this but don’t have the unpaid time to offer up to such a task.
I’m often approached for support with ACE applications and questions about the DYCP in particular – the ‘no strings’ opportunity to focus on being an artists is probably every artist’s dream. My advice until now has been to opt for NLPG, which has a surprising 42% success rate, I’m told. But I’m beginning to wonder if we should all apply for DYCPs to demonstrate our need, rather than be put off by the mixed messages embedded in this opportunity.
I feel incredibly blessed to have gained both GftA and NLPG in my time – a combination of doggedness and good fortune. I know how vitally important these awards are to an artist’s professional life, and I’m confident in saying ACE have invested well in me. I can now give back 100%+. And now that I’m almost at the end of my piece you’ll see that it’s all connected – artists are our industry including the neurodivergent. We need to fund so many more experiences like mine to build the knowledge bases I’m talking about. We also need to be allowed to remain creative practitioners as well as developing such vital sector support skills.
So in the last round of DYCP I submitted an application too, feeling not a little unlike Don Quixote tilting at windmills. It’s a bit like buying a lottery ticket now that I think of it, but as Susan Jones says we artists need the chance to dream – preferably funded.
On all the above, watch this space!
Photo credit Joel Chester Fildes
Do you know how to use the terms neurodiverse and neurodivergent?
What’s in a word? What are four letters between friends, you might well ask.
I myself am no fan of getting hot under the collar about language OR spelling. I’m dyslexic and I loathe being corrected. Way to feel like you’re back in primary school waiting to read to Miss, knowing that you’re destined to fail because your brain (unlike those of your mates) won’t let you.
So I proceed cautiously, but with a passion.
In my heart I know that words matter, though I honestly feel we can go too far. Again, I’ll take care, yet my impulse is to be strident because this is important.
My recent appointment to the A-N Board is an exciting development. An opportunity to help direct the biggest arts organisation for artists in the UK (and possibly even in Europe). I will do so neurodivergently.
I won’t help direct the Board neurodiversely because I am an individual and not a group. We are as a group (species; Homo sapiens) neurodiverse. Ergo, neurodiversity refers to a neuro-ecology. Pretty much think biodiversity, but with brains, and you’re there.
The neurodiversity paradigm is a term coined by Nick Walker, and I would recommend everyone who wants to understand it and the terminology to read his key text Neurodiversity: Some Basic Terms & Definitions. It is short and extremely clear.
Here’s one pithy example:
“Neurodiversity is not a trait that any individual possesses. Diversity is a trait possessed by a group, not an individual. When an individual diverges from the dominant societal standards of “normal” neurocognitive functioning, they don’t “have neurodiversity,” they’re neurodivergent.”
The neurodiversity paradigm is hitting the arts big time. Almost daily I’m astonished to read about opportunities for neurodiverse artists. The other day this was topped by reference to a self-diagnosed neurodiverse artist.
In the first case, technically speaking this reads as an open call like any other. In the second case, it reads like a double negative. Artist discovers they are part of a greater neurological-ecology like the rest of humanity.
I astonish myself by how much these understandable mistakes press my buttons, until I scroll back down the decades of dedicated research (and hard won experience) my current level of knowledge is founded on. This is not like my autistic ‘quirk’ about the status of the Tupperware cupboard (yes, I do have an unusual need for order in this department). It’s because the concepts my community have toiled over and honed for eons are sometimes being chucked about like newly plucked feathers.
I understand. When I was first corrected on this point, by Nick Walker himself, it took time to absorb the difference and get used to using the terms correctly rather than interchangeably, but I have done the work to get there because it matters to the paradigm shift we need to make. As Nick says, this is a social justice issue.
I’ve since developed my own understanding of the importance of working intentionally with neurological-ecology in mind. This I’ve termed ‘group-brain’.
To give an example, for my recent Arts council England funded #NUNOproject I was enabled to lead, and my ‘shortcomings’ were compensated for by the project’s combined neurologies – ‘group brain’. Whenever I needed it, there was a rich pool of talent to draw on, a sea of helping hands, and extraordinary good will to support me in doing my best job. This was possible because we were working openly with an understanding of our neurological profiles across the project, and across neurologies too. No hierarchy, no judgements, and full consideration to optimal working conditions for ALL, regardless of neuro-type.
Unless as Nick Walker puts it, those closer to the “dominant societal standards of “normal” neurocognitive functioning” understand they too form part of our neurodiversity as a species, we neurodivergents will be forever othered and we all miss out.
So I urge you neurodiver-gently to consider the difference. Absorb the language and the process it represents of de-centring neuro-normative brains. I say to you gently, move over, it takes all kinds of brains to make a better world.
In my view, arts organisation need to embrace the depth of learning required to become agents of genuine change. Being smart about language is a good start.
The painting you see before you is literally buzzing. It’s a good representation of my brain right now.
I painted it with great emotion, inspired by a piece of classic Spanish cinema called The Spirit of the Beehive (1972). Bees swarming. Having a bee in your bonnet. It’s all connected. But what do you do when the bees are inside your brain?
Such is the sensation sometimes with autism (I find). I qualify this because it will feel differently to others. We don’t need a bunch of bee-brain theories (or pea-brain theories, to be honest).
That’s why it’s hard to write about the less comfortable aspects of autism – you don’t want to fuel the ‘bad autism’ beast. See! Naughty autism got you, they might say, but I won’t let them. It’s not the autism that’s naughty. I guess I should blame the sillies who tried to tell me I was slow (for example) when it’s quite obvious I am fast (too fast at times). But I won’t do that either.
Increasingly, I’m inclined to believe that these people and many others just don’t know about brains, probably because they’ve never had to think about them (or their brains in relation to others).
Thinking about our brains (and what’s ‘wrong’ with them) is probably the sole preserve of the ‘misfit’. Majority brains don’t have to bother. In my view this labour is advantageous and our ‘misfit’ brains hold many advantages too.
It helps to identify the volume of traffic caused by the bees (ideas), and they don’t always swarm so. They also connect parts that other brain can’t reach.
What interests me about the mark-making activity documented in the painting above is that it narrates the impulses of my mind via the movement of my arm (and hand). The movement of my whole body indeed (because it was suitably frenetic – you won’t know this but I just typed frantic in error.)
I have therefore (in a way I can relate to) shown you the inside of my mind, without recourse to any words. You will see it. You will see my joy and my rage. You will also see my freedom. You have even seen my autism as it is. Dynamic, rhythmic, capable of control (for I have stayed within the picture frame and given you a harmonious dancing surface to gaze at.)
I want to show you more.