I was at an online meeting of neurodivergent (ND)people recently when I realised how little I blog these days, but how much there is to say about ND experiences under pandemic conditions.
I’m a freelance visual artist, mentor and consultant. I also write extensively, it’s often said in the obligatory artist bio. Except no. Lately, I can’t write. These days I can barely compose a text-based tweet on my once favourite SM platform, and I gravitate towards all things visual, preferring to use Instagram and posting the occasional photo tweet. I’m hoping to break my recent drought with this post, but what’s occurring?
We had gathered to articulate the specifics of the ND challenge in the arts. Not an easy task. We are but one of many marginalised groups and the arts is a tough nut of privilege to crack when it comes to opportunity. Yet there are distinct aspects to the ND disadvantage however slippery at the point of articulation. I’ve long said that we use the same language to describe quite different lived experiences across neurological types. This tripped me up for a lifetime until I grasped it as recently as 2017, in the wake of an autism diagnosis. A ‘common’ language to describe radically different perceptual worlds is a genuine obstacle, because it’s all we have. It’s a hermetically sealed system embedded with bias and assumption.
Too often the ND lived experience will be met with an exclamation of, me too! Our neurotypical (NT)counterparts are listening with NT ears. They can’t help it. We all do and have that, is perhaps one of the most common responses ND’s will get to open expressions of lived experience. It can be quite baffling for us, not to say dispiriting, and ultimately eroding. We know it can’t be true, as otherwise these NT’s wouldn’t be able to navigate the world with such ease.
A well oiled wheel with no grit on the road goes unnoticed when it is always so.
These false equivalences are a natural consequence of the double empathy bind, first coined by Dr Damian Milton. The double empathy bind unlocks the vacuum seal on the NT assumptions embedded in our shared language, and one of the most pernicious fallacies about autistic people – that we don’t have empathy – is rightly lambasted. I can’t do justice to Damian’s theory here, but my takeaways are that we don’t all perform empathy in the same way, and that humans across neurological types can only empathise with what they understand.
This is crucial. What’s needed is more understanding and more listening. I suggest this should be proactive on the part of the dominant NT listeners and would-be empathees. NDs can only do so much of the heavy lifting and we, after all, have the communicative disadvantage in NT spaces.
A further complication in articulating and enabling others to understand distinct ND need is that ND’s are not one. By which I mean that we, as a number, are pretty diverse in profile and need. Moreover, many of us have overlapping profiles, such as autism and ADD, for example. So this will never be a one-size-fits-all conversation. What we will need is flexibility and options.
This meeting was so good, mainly because it’s delightful to be in well moderated ND spaces. It was also productive to my thinking. I found myself writing the phrase cognitive load in the chat box. It’s a vital concept in understanding how our capacities can be worn down by hostile sensory input, interactions and information. When you can’t filter these inputs they quickly build up and cause overload. Pacing out input, simplifying it and allowing for down time is vital in enabling us to participate as equals. It seems obvious, but it is worth saying, when you can’t function you’re unlikely to be in, or stay in, the proverbial room.
Pandemic conditions mean that I’m busier than ever, mentoring and working with organisations, this is because the need is greater and the work is remote and therefore accessible. I have less time to process, but the demand for processing time is greater. Then there’s the pandemic itself, the processing elephant in the room. The magnitude of the pandemic and my feelings about the Government response, are enough to render me speechless most days. Combined with the increased cognitive load in my working life, I feel almost silenced. That makes me sad about my written advocacy.
I feel I have insights worth sharing, which could continue to help in the ND cause for parity and social justice. I meet so many ND creatives in my sector support work and can discern the patterns of lived experience and need, with my innate autistic ability for pattern recognition. I’m itching to share my thoughts, which surface in moments of quiet. Stress on cognitive load eats away at you. Thoughts can’t settle, working memory frays to nothing, the gaps in your ability to function widen. It can take days to recover.
My second chat box golden nugget is the phrase ‘global impact’. By which I don’t mean the pandemic. I wrote it in response to the question of distinctness, as we approached the close of the meeting. ND’s face multiple challenges in an uncertain and largely unstructured sector, which as an environment is an added stressor in itself. I’m interested in viewing the global impact of ND challenge across a lifetime as potentially being an inherent and ongoing trauma, requiring specialised safeguarding, support and recovery. It could be especially useful to consider the concept of global impact in the present circumstances.
In brief, it’s my sense is that it will be vital to any conversation about ND need to consider the global impact of lived experience in the context of the pandemic.
I’m so grateful to Jon Adams and Dan Thompson for organising the meeting as part of the Flow Observatorium Arts Council England funded ND Survey project. Thank you for restoring my blogging mojo!