April 15, 2018 § 7 Comments
My name is Sonia Boué and I’m an autistic artist. I’ve had a lot of luck in my career lately – which has largely come about using my own autistic methods and working with two truly wonderful mentors. On the face of it I look pretty networked in, but most of my opportunities have come from sharing my work and ideas online. At the end of each project I have to start from scratch, and I have no idea how to ‘use my contacts’ or network neurotypically. The sheer scale of the social labour involved in networking neurotypically is beyond me. This is why I have created a new kind of network called WEBworks, which is autistic in conception and in all it’s various manifestations. It’s for autistic artists and has a focus on professional development and creating access to opportunity. It’s a small pilot project – manageable and yet ambitious. It’s about empowering us all to become more visible and gain parity in the arts.
People are probably attracted to my work because of the intense autistic focus I am able to give to it – my attention is directed at what I do and not who I know.
So it’s been a jolt, and a hugely painful experience to be told by someone from Arts Council England at a recent conference (in a room full of professionals) to just “get networked in.”
Invisible disability is a box you can tick on a funding form to indicate who might benefit from your project, but it remains invisible in terms of just who might be present in a room full of professional people all grappling with the diminishing funding pot in the arts.
Autistic people are invisible as players. We’re so invisible that I’ve unearthed a major inequity in the funding requirements for those like me who aspire to be players. You see, I need big funding for my project, which includes support for WEBworks. Under present funding rules I need to prove why I can’t compete on a level playing field to match fund my project – and make the case that disabled people should not have to match fund their own access needs (and in my case that of my autistic colleagues). Perhaps no-one has thought of this, because no-one like me has ever applied to be a player?
(NB. I have been told ACE rules don’t demand that we match our access costs, and that exemptions exist within the present system – but this is simply not reflected in the mixed messages ACE give to it’s funding interface users).
When I found myself quite by accident at an ACE funding surgery in my local area and brought up the possible problems with match funding for disabled people in general – I was told this would have to be proved. If you just have a foot missing we wouldn’t be convinced.
I let this ableist comment go at the time, but made a mental note – this person needs training – and I (and all my autistic colleagues) hold much of the the missing knowledge.
A missing foot (if you will call it thus) could imply almost any level of impact in a person’s life (invisible disability such as PTSD, chronic pain, fatigue…we just don’t know and shouldn’t assume) which could affect their ability to raise the signifiant sums of match funding required if they are also not networked in. We’re not talking peanuts, we’re talking resource rich networks from whom signifiant favours can be drawn into a project – for which you have to be resource rich yourself to earn them (in ways I, and those like me just can’t be).
I shouldn’t really be blogging. I have my Arts Council application to finish, but this is way too important not to bring to light.
You see something profoundly (if unwittingly) ableist just happened to me, so aspects of Arts Council England’s disabling funding system have literally fallen into place.
I tried to speak about access in the system at a recent arts conference where Arts Council representatives were present.
For context, I rarely go to arts conferences because I find them inaccessible and they often don’t tend to speak to my experience. I don’t generally go about with a large ‘A’ stuck to my forehead, or a, hey, I’m autistic! t-shirt on either. In fairness not many people knew my status (though I did make a point of telling everyone I spoke to). If I go again – as I now feel I must – I will break all my own sartorial rules and wear the t-shirt (with flashing lights if needs be).
But when I raised what I consider to be a very real problem of access I have myself encountered and blogged about on the a-n blog site, I was just not taken seriously by the Arts Council representative. In the time it’s taken me to cut and paste this link I’ve received a comment from another artist. I know I was speaking for many.
“Yes, yes, YES! Keep going! I didn’t know there were diversity officers. Thank you for writing about this.”
Yet when I did speak up I was assured that everyone could have access to this particular service – just like that!
One person who heads a National Portfolio Organisation agreed. We have a regular meeting where you can talk to an Arts Council relationship manager (people who hold key information and can help with an application process) – as though I should perhaps have known about it.
Like the Alf Prøysen character in the illustration above, I immediately shrank to the size of a pepperpot! But something made me go on (I’m autistically stubborn and all about justice).
But you have to be networked in to have this access, I pointed out, without stopping to reflect that this might seem rude. I was contradicting someone who had (oh, to hell with it) contradicted me. As I look back on it now – they were essentially making my point for me.
Well, get networked in! the Arts Council rep replied, as though this were the easiest (and most equitable) thing in the world. That appeared to be the end of my ‘non-point’. I was to join the NPO groups’ monthly meetings, job done.
I felt the room close in on me. I had both humiliated myself and been silenced.
In the break that followed, there was no processing time. One kind person offered to send details of the NPO group meetings, and another told me they too had struggled to get access to a relationship manager.
Then darkness – a film presentation to end the day. An unexpected event. Tears rolled suddenly down my face. Have you noticed how obvious tear wiping can be – so much rustling and grabbing for tissues, and elbows wiggling as you surreptitiously dab at your eyes. I let them roll.
But why tears? People had been nice to me, and the moment had passed.
I cried because the film was just so beautiful. Broken lives were being made whole again through the arts. I cried because I had been disabled by taking a risk and speaking out. The profound silencing of autistic people is historic and deeply painful within each one of us.
I want to talk to all the regional directors of Arts Council England. I want to talk to the director. I would like to tell them about our struggle, and the bias of their systems.
I want them to know how art redeems every aspect of my life and keeps me connected. That I and others like me have so much to give – that we can be players if the playing field is levelled. What’s more we bring authenticity to the table. Truth is that Arts Council need us as much as we need it.
I’m not networked in, I will probably never be so in a recognisably neurotypical way. I rely on people to ‘get’ me and meet me half way. What interests me is how to make the system open and fair.
I want people at the very top of the organisation I apply to funding for to know how hard it was for me to stay in the room at this conference. How hard I have to work to be present, and what it took for me to raise my voice. So here goes.
One of the presentations just goes on and on. Everyone in the room is loving it I think, but the stage lighting sends an never-ending series of blows across my retina. I’m sitting too close to the stage. And the voices won’t stop. So many voices.
I’m caught by surprise. This shouldn’t happen now – the conference is in its opening stages and I have all day to manage. I struggle to find a strategy or any kind of relief. I begin to wriggle in my chair conscious that I mustn’t do this too much or someone will notice. Surely it will stop soon I think, so I try to hang on. But no, it just carries on and on.
I dig into my bag for the the soft tangle brush I sometimes use to rub across my palms to regulate the build-up tension, but by now I’m honestly near screaming point – the option of screaming occurs to me but I fully understand this would break an unbreakable rule. I realise after the event that the voices were too loud – the mics were set at the wrong level for someone with my sensory issues sitting so close to the front of this theatre space – I received information from the sound system which others can filter out. I’m desperate but rooted to my chair. The brush is as effective as a wet sponge. I dig it into my palms but it may as well be in my bag for all the good it does me. The voices just won’t stop – I close my eyes but not for long. Drawing attention to myself is the last thing I want to do. As the presentation draws to close I suddenly remember to pinch my skin under my sleeve and I step out of the storm.
The lighting shifts again and we’re brought back into a room I can regulate myself in more easily. I can appear ‘normal’. There is no visible sign of my distress or the energy it took for me to survive this level of unexpected sensory onslaught. I’ll know in future to sit at the back with easy access to an exit.
I want everyone at Arts Council England to know that telling anyone who begins a conversation by saying that they have struggled with access (in any context and for any reason) to get networked in, is simply not equitable. And I’m sorry, but for invisible disability it’s like telling a wheelchair user to grow a leg.
If you listen bottom up to authentic voices you’ll also discover why not everyone can just speak to a relationship manager.
It’s time for social currency (and who’s got it) to rise up the Arts Council diversity agenda.
An Arts Council award can be a profoundly life changing event in the professional life of an artist. This is what I want for all the artists who are involved in WEBworks.
In fact, I might just attach this blog post to my application. Why not – it sums up the need for my project perfectly.
January 23, 2018 § 20 Comments
Photograph by Stu Allsopp 2018
Don’t bother reading this. Yes – probably this blog post has been written before. Possibly even by me? I’ve written so very many posts since my diagnosis that even I can’t keep up!
Deja vu, reinventing the wheel, this is what comes to mind when I hit the web these days. Voices that have been silenced for a lifetime are compelled to speak, and in so many ways blogging is the perfect mouthpiece.
But I’ve become weary about sharing my life online.
Suddenly – as I approach my two year diagnosis anniversary – the plane is tanking. I’m not giving up on activism. There’s probably just a limit to how long a person can keep going without burning out a little, or even getting burned (which indeed I did in 2017).
Also there is overwhelm. It’s brilliant that the blogging scene keeps mushrooming – but it’s also that much harder to keep up.
And frankly ‘the autism conversation’ can feel a bit Kafkaesque these days. Working to counter prevailing narratives is a hamster wheel. The more you repeat the mantras – not broken, not a puzzle piece, not ‘with autism’ – the more they seem to come back at you.
It can feel like no one is listening – the majority aren’t. Perhaps they won’t or maybe they can’t? This is a question which troubles me greatly.
Yesterday – because my grasp of language is slippery – I found myself looking up the meaning of the following two words.
Realising quickly that I was out of my depth (I don’t really get the genres this language belongs to and I’m keen not to give the ‘aliens’ trope any additional help). But I am left with a craving for a vocabulary to express the inability of non-autistic humans to see us as we really are.
In the double empathy bind Damian Milton describes a difficulty in the communication process which originates from both sides of the ‘neurological divide.’
But I’m left wondering one thing. If I am human (and I am), and if other humans can’t see me as I am, what does this actually mean in terms of my embodied existence?
Why so difficult?
Cleary I’m struggling to identify a feeling. A feeling of being, and yet of not being – a lifelong sense of alienation and wonder(ing). At the weekend I momentarily toyed with the idea of being a replicant. And then thought about it in reverse. What if everyone else was a replicant in this warped narrative of othering? Hah, see how you like that!
Personal truth and authenticity seem to be at the heart of this – along with an uncanny sensation of a shift in time or space between us; a parallelism of embodied experience in which we can’t quite sync enough to grasp the nuance of the other.
And then I get it. No-body actually ‘gets’ anybody else (no matter how close they might feel, no matter how much or how little imagination they might possess). Surely all people really do is transpose their own experience onto others, period? If the embodied experience doesn’t match you have to try harder and ultimately take a leap of faith because you want to. (Tell me if I’m wrong.) I feel that the extraordinary writer Carson McCullers gives us a piercing window on this phenomenon in her debut novel, The Heart is a Lonely Hunter.
This goes for us all and – simply put – among autistic people there can be a much easier fit, and a higher chance of matching experience from which to form a bond. But it’s never a given.
You probably have to feel invested enough, and be willing to go to new places inside yourself to ‘get’ autism as a non-autistic person. You might even have to be prepared to lose your moorings (as autistic people have to among neurotypicals) in order to find the empathy g-spot?
Most people perhaps wouldn’t do this by choice. They might fear never getting back to themselves again (welcome to that one).
I don’t mean to say that there aren’t any neurotypical people who’re willing or able to do this, and do it while also holding on to their own boundaries (this last bit is very important). And god bless those who go for it and succeed. We love them.
But what I do think is that our daily efforts are largely a blank to most people, and the intelligence behind our multiple coping strategies is overlooked. All that’s often visible is the ‘getting things wrong’. Ingenuity, inventiveness, resilience and the sheer courage involved in managing our lives is an unseen entity, and indeed a valuable resource. Neurotypicals could learn as much from us as we are forced to from them.
But I’m beginning to feel it’s not my job to keep saying so ad infinitum. So I’m keeping schtum for a while. I’m not leaping about and waving banners, not until I can work my way through the sinking feeling that I need to try to be effective in other ways.
Ah, and I bet this is another staging post in the late diagnosis journey of becoming. In fact I’m almost willing to put money on it. At the very least I’d like a change of scenery from the hamster wheel.
I’ll still be working behind the scenes, but I’m good with quiet for now.
December 30, 2017 § 8 Comments
A post about unhelpful relationships.
You’re fantastic! I’m blown away by how many of you lovely readers have found your way to this site and even returned multiple times this year. Though I recently hit a dry spell I’ve returned to my stats page with a thrill.
I’m so grateful, because writing on The Other Side has been incredibly freeing for me. As an invisibly disabled person, I know that online blogs can be a lifeline – and mine has enabled me to spread my wings both personally and professionally in so many ways. Having company along the way has been the proverbial cherry.
My golden rules for writing are twofold. I’m careful to write mainly about myself, and try not to speak for others. I also write from experience. This has been vital in finding my voice, and in gaining the confidence to write what’s uppermost in my mind.
Along with some pretty fabulous events and opportunities this year, I’ve had cause to understand my vulnerability in relationships. It isn’t easy to own it.
But this can be a real problem for us – perhaps especially so for the late diagnosed autistic – who may have learned false coping strategies in relationships. We may need to learn a new and very particular discernment in the people we allow into our lives. For some of us it may be news that we even have choices where people are concerned.
It pains me to say that we might more easily be a target for unhealthy advances, but I think we often can be – unless we get wise, that is. In my professional life I’m a mentor to others, and I feel a responsibility to share my growing sense of heightened vulnerability in certain areas.
Apropos of which, I’ve begun to notice a particular type of advance from what I will call the faux enabler, who can present in many forms. Such individuals seek to help others as a way of gaining social currency, or even to obscure their own vulnerabilities. To be fair, they may not be aware of their own motivations – it can be a shock to some of us whose survival has depended on the ability to be deeply introspective and self-critical, that others don’t apply the same rigour to their lives. We ourselves are surely not without fault, but we’re often more prone to fall into self-doubt and try to ‘right’ ourselves (in my experience).
Unfortunately, autism can offer a touch of glamour for such minds. The trouble with this should be obvious, and it often is for family and friends, who may try to warn you that you’re the target of an unhealthy interest. My advice is to listen.
But I’m of the view that gauging the genuine enabler is not as hard as it may seem at first. There are some clear markers. Genuine enablers tend to keep a healthy distance while offering concrete, discernible assistance (of the kind which is actually needed) without making too much noise about it.
The faux enabler, in stark contrast, will zoom in and make constant demands on your attention. At first this can be flattering – you are being wooed. But it’s only a question of time before the intense emotional needs of the faux enabler begin to surface. Once more it may not be obvious. Often we have may have adapted to be kind beyond the norm. We may feel uncomfortable, but still we ignore the warning signs. Mixed signals may be to blame for our confusion – this in itself is a clue. Being ‘nice’ while messing with your head is reason enough to run for the hills.
Yes, giving your attention to such people is to lose your centre of gravity ultimately, because their need to be needed is so vast that you will likely be sucked into a vortex of unhelpful helpfulness. Again, I honestly think this may be unconscious in some cases, but this doesn’t make it any less troublesome to deal with.
Attention grabbers, in retrospect, were always obvious. The thing to grasp is how very smoke and mirrors some people can be – heaping praise and attention on you, while perhaps trying to separate you from a core group of friends and/or dominating all the spaces you might naturally inhabit. This should be a red light, but in the moment it can feel quite natural, and even be pleasurable until you begin to notice that something is wrong. You have been socially seduced with a view to ownership – in the more extreme cases.
The key to it all, I reckon, is to be wary of any person paying too close attention to you, while indulging in blanket flattery. If this is not a romantic relationship apply the brakes at once. It’s important to understand that you don’t have to reciprocate. This is neither unfriendly or cruel. The faux enabler will soon find a new target.
Genuine enablers are usually more discerning and are able to step back into their own lives. Anyone who offers to back you up without such discernment doesn’t actually have your best interests at heart. Deep down what they want is to keep you tied to them.
Manipulation is quite an art, and I’m currently reading an interesting novel called, based on a true story, by Delphine de Vigan. Being fiction (and a thriller at that) it is an extreme and ultimately violent example – but the patterns of faux enablement are spot on.
It plots the trajectory of a relationship which ultimately serves to immobilise and almost destroy the first person narrator. Delphine plays with what she calls “the Real” in her fiction – the book is perhaps autobiographical to a point, but she deconstructs the form as the novel progresses – and you never quite know where the boundaries lie. I was intrigued by this conceit.
In choosing this book, I was conscious of looking for further confirmation of my thinking on this subject (novelists can be so observationally wise).
It’s perhaps important to conclude with the view that faux enablers are not necessarily ‘bad people’ per se. They may have good intentions which are simply maladaptive. This is tricky, because the truly malicious person may be easier to discern and disengage from. In the end it doesn’t really matter – the only thing which does matter is you. Withdrawing from a toxic relationship is more important than being able to make a judgement on another person’s motivations, in terms of survival this is irrelevant information.
Owning our vulnerabilities and self-safeguarding come together, in my view. There is no way around this, but knowing it brings greater fortitude where social manipulation is concerned. Such wisdom is hard won and worth holding on to despite the pain of understanding that we may be susceptible to being played.
So my New Year’s resolution is to take a deep breath, and step back in making new relationships as a matter of course. And I do so hope this post will be helpful to others.
A peaceful and happy 2018 to you all.
NB The photograph which accompanies this post is of a work which focuses Anglo Spanish childhood. The book is an English translation of the poems of Federico García Lorca. Lorca was in-prisoned and executed by the Fascist insurgents under the command of General Franco, who later became Spain’s dictator for almost 40 years.
November 1, 2017 § 17 Comments
I’ll put it out there – I’ve had a very challenging time of it recently.
It’s a funny thing finding out you’re autistic late in life. I still sometimes wake up in surprise at my ‘newfound’ situation – and lately find myself astonished at some random moment in my day when my autism is revealed to me as such.
I thought these ‘quirks’ were just me – and they are. But they are also autism. These are the ways in which being me are autistic. It’s quite glorious and freeing – but I also get to grapple with how disabled I can be in many situations, particularly interpersonal ones.
The other day I stumbled on a new old friend – prosopagnosia – a form of face blindness. I can actually recognise faces and can be remarkably good at remembering where I know a face from (once I rolodex and pin down the exact circumstance in which I got to know the face in question). This is so satisfying! For years this skill even tricked me into thinking I was quite brilliant at recognising faces. It’s a good example of how compensation skills can mask disability.
So, it was surprising to me that some years before my diagnosis, I was presented with a room of 6 years olds whose features I found confusing to the point of blankness. Seen as a group I just couldn’t tell them apart – the fact that they moved around so much didn’t help either! Vestibular issues are at the heart of many of my visual/spatial challenges and so this figures.
More puzzling still was the time I thought a photograph of a man was me. This should have provoked more curiosity on my part than it did – but my bemusement at the time was quite drowned out by the mirth it caused my family who rolled about at my mistake. I myself found it quite hilarious, I must admit.
Looking back I see how contextual my facial recognition is. The evidence before my eyes was suspect even to me. What a big nose I had! What were those shadows on my face? All I could do was shrug at the loss of looks age seemed to bring!
Turns out it was not my nose, and the shadows were sideburns (!) but the point was that it should have been me, because the photograph was taken during a boat trip in which I was there. Other family members appear. They are sitting exactly in front of where I was sitting on the boat, (precisely where the male interloper seems to sit). Working backwards I now realise that it’s the angle that’s wrong – and so I simply don’t appear. Some strange man (who I don’t remember being there) is sitting where I should be! He’s right in front of my niece – where I should be!
Context overrode all visual evidence to the contrary. Blimey!
This episode was brought to the fore more recently when a similar blunder occurred. I mistook two random men in a photograph for two collaborating artists (one of whom took the photograph). Here the narrative which drives their creative project overrode the obvious evidence before my eyes. It was potentially embarrassing – but at least I can now say that I am in some ways quite face blind. My strategies are incredibly honed – and I do hold faces in my mind (I love looking at faces too), but this becomes weakened and breaks down easily it seems.
It’s more evidence of the quite different ways in which I piece the world together, and the myriad ways in which I must work harder and can get left behind.
It also makes me prey to misunderstanding, and frankly abuse. It’s not fun finding out you’re vulnerable to manipulation, but it’s important to face it (and take protective measures).
I’ll end this post on that delicious pun.
September 13, 2017 § 1 Comment
Some days I hear blather.
It’s talking or something else.
You say it.
And we cut the grass.
The wind blows.
She is moaning.
I will meet you at the station.
Ah, but you won’t be there.
Because this is the longest day.
And I won’t swim in the sea,
or even touch it with my toes.