Critically reviewing disabled artists.

January 9, 2020 § 1 Comment

 

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So last week I went to the fantastic closing event (conference) organised by Disability Arts Online as part of the Contested Spaces exhibition, at the Foundry in London, curated by Aidan Moesby.

Access arrangements were superb and the event was pithy. Succinct, and brimming with content, it was concluded with a quite beautifully poetic performance by Malgorzata Dawidek. Aidan deftly chaired the panel, which featured Jennifer Gilbert, Ashok Mistry, and Elinor Morgan. I came away enriched and energised.

I was especially struck by the lack of critical review for disability arts as a topic – though  I’m a relative newcomer to the field. This is a good moment to say that I’m autistic, and that I can’t claim to speak for anyone but myself, and that I will focus on critical review in my blog post.

Jennifer Gilbert highlighted some shocking examples of ableism in mainstream reviewing of disabled artists, Elinor Morgan suggested strategies for disabled artists to gain access to feedback and build confidence, which might in turn lead to critical review. Raising the quality of our work was also touched on in this context. I will come back to this.

I was pleased Ashok Mistry spoke about having something to loose in engaging with the art establishment for approval – our very difference is precious. It is. Our very difference is our sometimes very ‘marketable’ USP (unique selling point), among other arguably more important things. I can’t think of anything worse than contorting the self to fit in. Surely we need to infect the ‘mainstream’ with our glorious USPs rather than try to second guess it.

I left the building with Artistic Director of DASH, Mike Layward, who kindly saw me to Marylebone Station. I’m indebted to our conversation for helping me articulate what I think I feel about the critiquing of art made by disabled artists, certainly I feel it about the area I know best, autistic creatives. We are all of us outsiders by default unless masquerading as…well…just artists.

Someone (I think it was Mike) had earlier pointed out that Frida Kahlo has been assimilated by the mainstream through the erasure of her disability despite it often being her subject.

Another good point which I hadn’t considered was raised by the panel that critics can be frightened of reviewing us because they might ‘get it wrong’, thereby causing offence and also loosing credibility. Time for some tough love. Do the work. Research the field, don’t avoid it. Yes, it can be quite hard to get it right, but a lack of familiarity with disability issues as an excuse in 2020 looks as weak as a used teabag. Get on with it, because here is where the good stuff often is!

I’m autistic, so as usual I experienced a lot of upside-down thinking about this topic. I so appreciated Ashok’s comment that he’s a professional outsider! Okay, critical review is important. Informed critical review can be vital to a career, but the uniformed critic who’s anxious about getting it wrong isn’t what we need. I say this as someone who supports neurodivergent (ND) artists professionally. Often the job is to unpick the barrage of unhelpful mainstream ‘critique’ they’ve experienced over a lifetime.

These nascent artists need nurture, and perhaps most importantly autistic artists may not find conventional critique/ review helpful as a form – though of course they may benefit from exposure. It isn’t just that we need to build ourselves up. There can be a genuine cultural difference, I’ve found, whereby our need for input is simply that – different. So I think we need a range of methods for evaluating and elevating artists. ND artists may not need conventional critique so much (because it may misread or prove irrelevant to them) to improve the quality of their work, but may perhaps benefit more from access to the kinds of resources which enable better production values. Quality issues (if they exist) may be about being cash poor and unable to invest in materials or production processes. That’s not to say that encouragement and tailored mentoring aren’t vital. They can be. It’s just that the current model for artists’ elevation via critique and review is like the hotel elevator that ain’t working. We often don’t get off the ground floor and I wonder if this resonates more generally for disabled artists? What would really help you, is my question.

Little about the way many ND artists work best is reflected in neuro-normative professional practice. There can be a great deal of unlearning to do in unshackling ourselves from these tyrannies. Perhaps more needed than conventional critique is help in understanding neuro-normative codes. It’s very simple, you can’t be expected to navigate what you can’t see or even begin to process. The current system is completely weighted against us.

So my heart sinks a little at the idea of chasing conventional critiques – though ironically if my most recent DYCP ACE funding bid is successful (very slim chance), I will be doing exactly that thing, but doing so autistically and on my own terms! Surely the best critiques consist of dialogue and if reviewers are frightened then that’s a sign that such a dialogue is lacking.

So, what’s needed first is a culture shift, and projects or initiatives which dare to throw stakes in new ground. Critics need to understand what they’re viewing if they’re to be any good to us. Review isn’t just about exposure, it’s also about framing. Ah yes, and it’s about bums on seats, which is an area I haven’t yet touched on and probably won’t for lack of time.

Ashok unlocked something vital when he talked about the need for us to be allowed to be our ‘messy’ selves (forgive me if I haven’t paraphrased you correctly, Ashok!) For me this is the key to making a necessary 360 degree turn.

Critics need to know what they’re looking at to get it ‘right’ and be helpful. It goes without saying that we need disabled critics and curators, but we need ally curators too. I hope that if some of the Shaping the next ten years (Arts Council England) policies go the right way we may see a real development of ‘hybrid’ ally professionals along with more of us (of course!) I’m very keen on collaboration as a way forward.

In the field of invisible disability (which has a shorter history) I feel we are in a useful moment of transition where disruption can occur (and I hope this resonates more widely with my more experienced disabled colleagues). I don’t think that what we need is judgment on abled/neuro-normative terms, but rather that our products must be allowed to flourish as they need to and be equally valued. What I feel we need is opportunity on our own terms to create what we believe to be good, which may be very different from the current mainstream critical agenda.

We also probably won’t be equal until the boot is on the other foot and the ‘mainstream’ values and seeks out what disabled curators and critics think about its cultural outpourings. Dialogue is all.

I began my 2018 catalogue essay for the Shadowlight Artist’s Arts Council England funded RISING exhibition with the following provocation.

“What if everything you ever thought about learning disability is wrong.”

A power imbalance exists because the ‘mainstream’ gaze monopolises and is uninformed. It creates insiders and outsiders and is extremely outmoded, as Drag Syndrome are currently proving on the global stage in taking it by storm.

I think the conversation has probably moved on already and it’s now for the ‘mainstream’, so-called, to catch-up if it can.

 

Living with ghosts and the value of creative resistance.

December 15, 2019 § Leave a comment

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View of my home with a painting by my father (in 1950) hanging above some vintage suitcases and alongside two works of my own from the Buenos Días Dictador (2018) series.

Those of you who know my creative work will know that I’m haunted. Yes. I live with ghosts.

I’m going to share a secret. I talk to a handbag. I’ve even written letters to it. No, I’m not loosing my marbles. In 2013 my grandmother’s handbag came back into my life and whispered in my ear. From this moment my life changed and my art practice blew wide open. I knew what I had to do, but I couldn’t guess where it would take me. I’ve just commemorated 6 years of works responding to the Spanish Civil War and my family’s political exile. Previously unspoken, I’ve sought to bring to light this history in order to understand my heritage and heal trauma wounds.

My practice has come a long way, but since those first whispers in 2013 – in which the rise of fascism seemed more historic and remote than it does today – a curious echoing of past times has struck me again, and again. Incremental, creeping closer, and ever more distinct, the feeling of deja-vu pervades. It announces itself as a sudden chill, or today as a moment of terror in reading about the multiple ways in which this brand new Conservative administration already threatens to mimic all that our American cousins have endured in their President for the past 3 years. As if we didn’t already know that Boris Johnson was the perfect UK double for Donald Trump.

My 6 year haunting – yes, I live with my art now and am surrounded by ancestor talismans and tokens – begins to feel prophetic. My grandmother has been whispering through her handbag for so long now that sometimes I admit I haven’t always heard her. Life became full at times and I forget to listen, but believe me I won’t be making that mistake again. Abuela (as grandmother is called in Castilian Spanish) is tugging at my sleeve.

I know that she will show me what to do, and this is a great comfort, but she’s taken great care to remind me how quickly the wind can change which is unsettling too. She knows the supreme value of preparedness because she’s survived a Civil War. Abuela will guide me in her gentle way, and then fasten her apron strings to make us cafe Bonbón. She knows how to cajole, but from now on she has my full attention.

The atmosphere of sudden departure is in my DNA. My family fled for their lives from Spain along with almost 500,000  Republican Spaniards when the fascist dictator Franciso Franco seized power in February 1939.

I know that I must ready myself in whatever way I can. History repeats itself, this we know. I’m not prophesying war and catastrophe, I’m obeying the unspoken laws of my DNA. I know I’m not leaving tomorrow, but I’m vigilant and quietly offloading. I have already asked myself what I could fit into packing cases and would there be time and money to ship my work? These are unknowns. A crossing of bridges.

Abuela smiles her approval. I look at the jewel-like object I know I would take with me no matter what. It would be my father’s only known/surviving painting from 1950, shared on Instagram just yesterday @s_boue, which also features in the image above. Abuela pinches my cheeks affectionately, and I’m suddenly taken back to the memory of my father sitting under an acacia tree writing while we were on holiday in Spain in 1972.  He would have been writing something other than his his plays, as by this time he had given up on playwriting for the sake of his mental health. I’ve come to view his exile theatre as creative resistance, and I increasingly see my own work in the same light.

Abuela beams at me. I’m old enough for these truths to be known, but then a shadow passes over us and her face becomes suddenly sombre. Fascism creeps in through the back door, she says with a shudder. I nod. It begins with fear; of what you read in the newspapers and what you can no longer say freely.  I understand now without her saying it that these 6 years have been a preparation too. All this time I have been on a parallel mission of making and packing, and leaving a trail for future generations – as I now realise that my father did in his time.

Life and art are never separate, not even if you try to wrench them apart. It’s been a long time since I wrote in quite this way, but we are living in increasingly frightening and unsettled times. My blog is a call for preparedness, but above all for creative resistance. Finding spaces in which the mind can be free become more vital when our actual freedoms are under threat. Every act of creativity and self-care is a means of survival. Reaching out and organising is what we must do.

 

 

Neurodivergence and tokenism in the arts!

November 18, 2019 § Leave a comment

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Stills from video capture: Sonia Boué, 2017

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!

 

 

 

Neurodivergence – language, the concept of ‘group brain’, and neurological-ecologies.

November 5, 2019 § 1 Comment

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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.

 

 

 

Slick as a seal, I rise – making autistic empowerment visible

October 26, 2019 § 4 Comments

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Well, I try. The last time I used this line (in a poem) I was met by guffaws. My children find me hilarious, a fact I often find bemusing but welcome. I don”t think my head will ever get too big while they’re around to remind me that I sometimes risk being pretentious if not risible.

In my art practice I’m building up to new works, and am encountering new ideas in my other work too. I have many jobs (or many projects more accurately put) to which I can now bring a lifetimes experience of the kind that matches, when so often in the past my experience has been out of kilter. I’ve also been given a creative opportunity which has over the past year blown my practice wide open. These two related events are working a strange kind of magic on me.

We are a sum of all our parts, it’s said, but for autistic people it can be hard to experience the parts as connected. I certainly didn’t until quite recently. This feeling of fragmentation is something I’ve written about before. I think about evolving as an autistic person since my diagnosis in 2016 as a series of incremental steps towards a feeling of congruence. I believe the mechanism involved is the unlearning of unhelpful coping strategies and exploring new more suitable ways of navigating the social world.

With my relatively newfound anthropological lens on life even my mistakes become opportunities for learning. I’m no longer mortified, feeling (quite rightly) that I can’t help being ‘blunt’ at times. I’ve decided I really would like a t-shirt which says, congenitally tactless! I feel it might go down well at parties I will never go to and be quite fun to wear. I’m not the first to notice that people like it if you get in first with the joke and don’t mind having a good humoured chuckle at yourself. But I’m getting ahead of myself.

For some autistics this would feel very alien advice and so I don’t share it as advice (because for many of us being the butt of the joke all our lives has been bad enough without any own goals in this department). I share it as an observation (from a self-confessed privileged vantage point), and because I’ve found that opening up about my areas of struggle enables others to come forward too. This is revealing and, I think, important  – I remain convinced that there are more ND people in the world than the world currently knows about. Also that in accommodating our needs we accommodate others. So privilege and path-beating go together.

As I continue my journey towards autistic congruence, I can’t help thinking that the high incidence of hostility to social difference in our culture can block our ability to experiment and learn early on in life. Accurate perceptions about autism in the non-autistic population are also equally stymied it seems to me. As I’ve said so often before, if the welcome isn’t right we can (unsurprisingly) become contact averse. Like so much misperception about autism this process (in my experience) is an ongoing social dynamic whereas people tend to think of autism as a fixed state of being. This is not to say that I think we need more encouragement to adapt to the neuro-normative society we find ourselves in (this is not what I mean) – simply that with the right knowledge and conditions we can all learn from one another across neurological types.

The discouragement that an autistic person might receive over a lifetime can perhaps be seen as an incremental force in the opposite direction to the one I’ve found myself travelling in since 2016. This is a truly terrible thought. Okay, I’ve always ‘worked on myself’, but it’s become clear I was working with the wrong information. As I said quite recently to a friend – it was like I was paddling along in a canoe and suddenly I was given a turbocharge engine.

I can’t talk about my new work yet, but it makes my pulse race and spurs me on even as we face the tipping point of winter (my life long nemesis!) What I do want to do is offer encouragement to others, wherever you may be in your journey to congruence.

This is why I make myself visible, because in the words of Soweto Kinch on BBC Saturday Live this morning (about 20.40 mins into the programme), you can’t be what you can’t see. This too I want on a t-shirt.

 

 

 

You have even seen my autism as it is.

October 9, 2019 § 1 Comment

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.

A little bowl of love and kindness – taking the strain out of caring.

September 3, 2019 § 2 Comments

This has been an exhausting week. I’m used to caring for my mother part time in her own home where she has all the adaptations she needs. Suddenly the need for me to be on my own home turf coincided with mum saying she was ready to come and visit us in what has been (up until more recent times) her home from home. In a flurry of activity I cleared the clutter, refreshed her linen, and steamed the floors.

It’s been a luxury to spend 7 straight days in one place to be honest, but we’ve struggled at night due to a lower bed frame and lack of accustomed grab rail to help mum get out of bed. There had been no time to get one and no way to improvise a safe alternative. She has nocturia which means myriad trips to the loo at night, which combined with the loss of her mobility aid made for a whole heap of broken sleep for me. You can imagine what helping someone up 6-7 times does to a body, and I could see exactly why she snoozes so much during the day. I now have wrinkles on the bags under my eyes!

I admit I’ve felt mangled, and quite unable to piece together more than a Tweet or two. Oh, it’s been glorious too. Just seeing mum’s face as she took in a loved environment she thought she might not see again was marvellous. I swelled with pride as my little home proved more adaptable than I could ever have hoped. Mum could manage everything but the bed.

I’ve done the obvious and ordered a grab rail which will hopefully arrive before her next stay. These things can never come quickly enough though – where are all the local grab rail outlets when you need them? That said, it is amazing what the body and brain can sometimes do in straightened circumstances. We spent a morning troubleshooting the problem after a particularly ropey night. She worked out – quite spontaneously – that she could grab the bed frame itself and lean on her elbow (practice helped) to swivel round on her side and get her legs over the edge to terra firma. It was a case of now I can and now I can’t for a night or two. This became easier and more fluid an action as the nights wore on. We kind of managed, but her risk of falling is great and one must keep an eye open (from the futon mattress at the end of the bed).

Today I was to drive her home (to her house) after lunch, and feeling slightly less mangled than before I was inspired to make croutons to go with our homemade courgette and black bean soup. It would use up a block of stale bread which had got trapped in the bread bin under a pile of newer slices. The act of not wasting felt good in itself. A cheery drizzle of olive oil was soon guzzled up by the pale hunks, and so I drizzled some more, and then some some more! Croutons know how to take care of themselves allowing me to wander back and forth between various points of interest in the room.

Mum – newspaper on lap – slept peacefully in a chair while my now young people bantered. Granny (mum) helped bring them up when they were tiny, and was a faithful weekly visitor despite the 70 mile commute. One picked out a tune on the piano, the other worked on a drawing. Both hovered over the pan. Smells like sausages!

I chucked some thyme at the croutons, no longer pale and wan they looked crispy and golden. This simple transformation lifted a hearty yet simple soup to new and quite heavenly heights. Delicious! called out three generations. Mum doesn’t eat a lot these days, but she had polished off every single crumb. This felt like old times again when she was at the heart of our little family as the commuting grandma. It was wonderful to have her there again as we really didn’t know if she could manage the environment.

Extreme old age isn’t easy, not one bit. Mum carries it with great dignity but these few days without a bed rail have taught me so much humility. We will all at some point need adaptations (if we’re lucky) and should probably plan ahead. I’m chastened by the unravelling that can take place for want of one simple adaptation.

I can’t really explain it but somehow that lovely bowl of soup set us on our way and mum’s visit feels like a triumph. For want of a bed rail the battle for sleep was lost, you might say, but a bowlful of love and crispy croutons won the day. Next time I’m awake in the wee hours I will try to remember this well.

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