Neurodiversity

(Edited from a draft first published on Kiltr a month ago)

This was my last post on Kiltr. I may pop back up again later, possibly sooner with an account for a current project or two than is likely for a personal one. For the most part, its not them, its me.

I’ve mentioned once or twice, while posting and in comments, that most of my posts have been exercises in cognition. I’m not sure everyone understood what I meant by that so I took a little time to explain before I left because its relevant as to why.

If your not aware of the concept of neurodiversity, the neurodiversity paradigm or the Neurodiversity Movement, perhaps understanding something about them will give you a little context, help me explain and move on to show how they all, those exercises in cognition and the neurodiversity ‘troika’ influenced my decision.

New paradigms often require new language. Neurodiversity has only really been used as a term since the late 1990s; it describes the diversity of human brains and minds, neurology, the infinite variation of neurocognitive functioning within our species. Neurodiversity is a biological fact. It is not a perspective, an approach, a belief, a political position, or a paradigm. Thats the neurodiversity paradigm, not neurodiversity itself,

Neurodiversity is not a political, social justice or activist movement, thats the Neurodiversity Movement. When an individual diverges from the dominant, often unnecessarily prescriptive, societal standards of ‘normal’ neurocognitive function, they are neurodivergent.

The neurodiversity paradigm provides a philosophical foundation for the activism of the Neurodiversity Movement, which is a social justice movement seeking civil rights, equality, respect and full societal inclusion for the neurodivergent.

The Neurodiversity Movement is not a single group or organisation. Having grown out of the Autism Rights Movement, there are still some overlaps between the two but they are not one and the same. The Neurodiversity Movement seeks to be inclusive of all neurominorities and there are some who advocate for Autism Rights but cannot rightly be considered part of the Neurodiversity Movement because they still consider autism to be a medical pathology or ‘disorder’, a view at odds with the neurodiversity paradigm.

Being neurodivergent means having a brain which diverges significantly from dominant societal standards of ‘normal’. It is a broad term which can describe mostly or entirely genetic and innate neurodivergence or it can describe neurodivergence which occurs as a result of brain/neurology experience, or some combination of both. Some forms of innate or largely innate neurodivergence, are seen as wholly intrinsic and pervasive factors on an individual psyche, personality and way of relating to the world. The neurodiversity paradigm wholly rejects the pathologising of such forms of neurodivergence and the Neurodiversity Movement wholly opposes any attempts to ‘get rid of’ or ‘cure’ them.

Other forms of neurodivergence, like some forms of epilepsy or the effects of traumatic brain injuries, can in many cases be 'removed' from an individual without also erasing fundamental aspects of the individual. In general, the neurodiversity movement does not reject the pathologising of some of these forms of neurodivergence but also recognises the nuances of more subtle forms and individual cases. Whilst the Neurodivergence Movement does not wholly reject consensual attempts to ‘cure’ some of these aspects of neurodivergence, it also recognises the dangers inherent in attempting to do so in those more subtle forms or in a non consensual situation. The movement most definitely and actively opposes any and all forms of discrimination, including and often in particular those aspects of discrimination which are difficult to recognise from positions of dominant social definitions of ‘normal’ (neurotypical), against any neurodivergence.

The terms neurodivergent and neurodivergence were coined by Kassiane Sibley, a multiply neurodivergent neurodiversity activist. Other aspects of the lexicon have been added as understanding and necessity have grown.

A neurominority is a population of neurodivergent people about whom all of the following are true:

1.They all share a similar form of neurodivergence.

2.The form of neurodivergence they share is largely innate and is inseperable from who they are, constituting an intrinsic and pervasive factor in their psyches, personalities and fundamental ways of looking at the world.

3.The form of neurodivergence they share is one which the neurotypical majority tends to respond to with some degree of prejudice, misunderstanding, discriminmation and/or oppression (often facilitated by classifying that form of neurodivergence as a medical pathology).

I have two strains of refractory Frontal Lobe Epilepsy. There are 265 people in Scotland with Frontal Lobe Epilepsy who are refractory, or resistant to medication, and are not candidates for surgery because their root epileptiform is in an area of the Frontal Lobe too deep or difficult to access without causing damage to other areas of the brain. People with epilepsy in this category are a neurominority.

For me, the innate nature of how epilepsy affects me didn’t become fully apparent until six years ago. The unusual, often bizarre seeming to neurotypicals, seizure patterns and high occurrence of seizures during sleep mean misdiagnosis or failure to diagnose until later in life is a fairly common occurrence. This also means it is not unusual for people with Frontal Lobe Epilepsies to find their diagnosis is only prompted when the seizure patterns have become more entrenched, virulent and debilitating. This also makes resistance to medication more likely. It further means a difficult route to understanding and management of seizures for the individuals concerned.

Whilst I’ve written fairly extensively about epilepsy in general, my personal social experiences of living with epilepsy in Scotland and of the crisis in epilepsy provision across our nation too (The Politics of Sleeping Pts 1 & 2, first published on Kiltr and republished on this blog give an overview), there are some aspects which I have deliberately omitted to mention. Explaining a few of them may elucidate my reasoning here a little more.

Discovering, at the age of 41, that I had been having seizures in my sleep for most of my life was disorienting to say the least. It made sense of the ‘random’ (clearly when my seizure activity during sleep had been higher and ‘spilled’ into waking hours, albeit briefly) times before then and increasingly so in the lead up to diagnosis, when seizures occurred whilst I was awake. What was particularly harsh and disturbing to discover, from my very first fMRI scans, was that a large part of the issue derived from a very clear, actual handprint on my brain, with three fingers digging deep into the frontal lobe. It grew even less palatable to discover on my first testing for genetic markers of inherited epilepsies that I also had an underlying Autosomal Dominant Epilepsy, a variant of male inherited seizures which when untreated or undiagnosed often lead to violent outbursts. There was a sick irony here in that my ‘handprint’ was extremely likely (I have no way of confirming with no family connections to verify further) was left there by a violent, undiagnosed father, who my mother left when I was just eighteen months old when he ‘lifted his hands to the bairn’.

A further exacerbating factor in me arriving at a point where I have between 40-120 seizures every single day, with the only way to keep them at the lower end of that scale being extremely careful management of how virtually everything can affect my levels of GABA and seizure threshold also has a sad irony to it.

A further, far more recent head trauma is likely to be responsible for the significant slowing I have over my left temporal lobe and is the reason why, when I secondary generalise, my seizures also act like temporal lobe seizures. The trauma was inflicted by an ex partner who, in a flashback moment, mistook me for her violent ex partner lying in bed and attacked me to the point of extended hospitalisation with a marble-based antique phone.

The ‘thumb of the handprint’ also leads to occasional occipital lobe activity to exacerbate everything else. I dont say any of this to garner any sympathy, merely to explain more in depth, in lieu of promoting a greater understanding generally, the nature of my neurodivergence and of how there are many instances where neurotypicality can become neurodivergent; it could happen to anyone. 

Before all of this became clear to me, I had a relatively successful career as well as a fairly adventurous life. I brought my son up as a single parent. I worked my way through two degrees, my first PhD and various design qualifications. I'd lived a good few years in other countries. I'd made a lot of art and music.

When the seizures started hitting harder, faster, more debilitating, I had been building up a fairly unique arts hub, which I had sunk my savings from my previous job into. I’d worked with a local property owner in my hometown and after a couple of years things were getting somewhere. It had helped me realise a dream of owning and running a design and music studio as well as opening a boutique organic cafe with the love of my life.

I have none of those things now (except the love of my life) as a direct result of the impact of the seizures.  I have other things instead.

I founded a non profit company three years ago now based on the neurodiversity paradigm and inspired by, drawing on, my own experiences socially and of trying to access absolutely necessary, but not always easy to access or obviously forthcoming, social and clinical services in Scotland as a person with epilepsy, which I intended to use as a representative force for people with Frontal Lobe Epilepsies as a neurominority. I wanted to utilise all of my varied skill set in such a way as to benefit the company and its aims whilst hoping to minimise the impact of that on managing my own seizure thresholds and patterns.

The model which was developed for the company, proving fairly successful, was to provide a discrete graphic and web design service as well as social media management/marketing and SEO for third sector clients at significantly below market rates. I’d worked in design and marketing for long enough to know how much could be trimmed from the bottom line and still make a profit whilst freeing up budgets for our clients by not overcharging, a virtuous circle.

Initially working alone, I trained others with epilepsy who were having difficulty accessing employment to work on aspects of the contracts. The profits made were/are used to provide other much needed advocacy for people with epilepsy in Fife, the Lothians and Perth & Kinross, anything from helping with training, CVs or benefit applications to helping compile and fight hate crime cases, to the simple things, like dropping in some healthy, hand made, microwaveable meals to someone struggling to feed themselves whilst their seizures cluster. They also pay for my second PhD, which is ‘A Political Ethnography of Frontal Lobe Epilepsy in Scotland’ in hopes of directly influencing future NHS and social policy on epilepsy.

You might wonder how I manage all of this whilst having an average of 80 seizures a day. The simple answer would be, with great difficulty.

In this regard, whether the good folks at Kiltr know it or not, Kiltr has provided a beneficent public service. Here’s where I get round to explaining a bit more of that cognition thing.

Most of my days begin in secondary generalised seizure, with simple and complex partial seizures having clustered tighter whilst I have tried, inevitably unsuccessfully, to sleep. This is an extremely disturbing and disorienting way to start your day, even without the cumulative issues around failing cognition just due to the insurmountable sleep debt of never sleeping more than two hours a day, without the exacerbating, debilitating nature of seizures. There are days when the overall impact of cumulative sleep debt and seizures affects my cognition to the degree where I cant recognise my loved ones or my home. Sometimes the upset of that can send me straight back into another cluster of more violent seizures.

In order to function at all, it has been necessary for me to develop a system of management for my issues with cognition on waking, both to avoid this and the increased possibility of continued clustering of seizures throughout the day, instigating cycles which can seem never ending if allowed to perpetuate. Tipping over the 80 seizures a day often leads to much worse cognition, in turn leading to accidents, frustrations, all of which leads to a much higher likelihood of me having to be hospitalised for my own safety. The patterns of hospital routine do not settle my clusters, in fact tend to exacerbate them.

So I have developed patterns of familiar behaviour to repeat on waking which do not cause frustration and more often than not lead me into sharper cognition and fuller functionality. Because some of the gist in doing this is to enable me to do the good works I have set out to do, much of which involves me writing and/or designing, before I am fully aware, most days, I am sat in my home office doing aspects of one or the other.

Now, what comes out of my addled neurodivergent brain at that point is mostly disjointed words, notes, ideas and scribbles/sketches. Somewhere in them though, when I look again a little later, there will be some sense, a theme or at least the germ of an idea. When I notice that, I hook onto it, write or draw (with pen, pencil or mouse) some more. Almost directly parallel to me developing this system of cognition management, I discovered Kiltr..

Kiltr, as a new media platform, gave me a safe space within which to make something a little more of those cognition exercises. Every single piece I’ve written here began that way; ideas I remembered, things significant to me, sometimes just a little snippet of cultural effluvia I have ultimately felt worth sharing, which emerged as I fought back to cognition. In order to utilise the system for best benefit to me, I have deliberately set about gathering supplementary evidence for and prepared for presenting ideas in a similar way I might in my academic work, just in a more informal and (attempted to be) more entertaining way. Working through writing the pieces has geared up my cognition for my work on virtually a daily basis and I can never thank Kiltr enough, for both providing an open platform which would allow scope for this and for encouraging and disseminating my writing further. Thank you and thank you again, Brian Hughes, for setting the ball rolling on all this Kiltr thing, Brian Beadie and Erik Sandberg in particular.

Kiltr may have been unaware of the public/private service it was doing but it also seems many of its users, and of course those yet to find it, are unaware fully of its multifarious benefits. As a model, Kiltr was in there as a Scottish variant to platforms like Medium relatively early on in social media based development. It requires content to survive though. Content produced by its members.

Models like that depend on something I am forever wittering on about to my SEO and SMM clients – reciprocity. I’ve tried over my time on Kiltr to read and like as many posts as possible. I may not have wholly agreed with the content every single time but I fully appreciated the effort to put something together worth publishing on the platform. How many of you have put up a post and thought, no one realy bothers, I only got two likes, whats the point!? How many people read posts on Kiltr directed there from other platforms without even needing to be a member or signing in? How would you know? How many people post their stuff up on Kiltr but never click a like on anyone else’s posts, even if others always click on theirs? How many newbies to Kiltr make their first post, no one clicks like so they decide not to post again or they think their efforts weren’t much cop, maybe even give up on the thing they were posting about, even though quite a few people may have read the post? Reciprocity for Kiltr, internally and across other platforms, and for other Kiltr members, will only see it going from further strength to strength. Just saying.

Kiltr defines itself as a new media platform, it is not strictly a social media site but it does utilise some of the tools of social media, mainly its means of promotion and in comments sections. I have always found it frustrating when users have attempted to use Kiltr more in the manner of 'traditional' social media since I have also found this to undermine the cohesiveness and community of the new media platform model.  Just because it has 'social' in its descriptor, doesnt mean it makes us a more social animal, social media is generally 'healthier' for businesses, advertising and big data than it is for individuals and does not necessarily create civic, civil, social, inclusive spaces, often the opposite.

Perhaps I misunderstood but I always saw a Habermas-ian impulse to the kind of virtual civic space created by Kiltr. In the same way that academics could publish claim and counterclaim, I saw the potential to circumvent the divisive traits of social media by avoiding the knee jerk reactionism of excessive trolling of articles or profiles. If you disagreed with something you could just publish a counter piece.

This was actually extremely important to me, since I’d found those impulses in social media to be detrimental to my neurology. You may have noticed I write on some fairly weighty matters and have not a few worldly concerns, as well as the stuff which I just find academically or culturally interesting. They are all subjects dear to me which I am rarely not thinking about, clearly even when my neurology and cognition fail me in so many other ways.

Now imagine, if you will, a situation where someone who rarely publishes anything detailed but comments a lot and often at length on social media, comments regularly, belligerently, on others' articles and subjects, commented on articles I wrote.  Try to remember in that imagining the cognitive situation the pieces were conceived in and how precious they might sometimes feel. So imagine then a situation I find myself in all too often where, after having worked myself into full cognition, I have spent almost all of it again in a day, often with some disturbing and harrowing impacts if the day has been spent in our advocacy office or in ethnography collection working alongside other people with epilepsy. I’m trying to relax with what little cognition I have left and look to see if anyone has liked or commented on my pieces, there are comments like that.

I can’t rely on myself to reply in a way which reflects the fullness of my cognition or understanding of the subject but there is more than an overwhelming necessity to do so. As my cognition wanes and seizure pattern intensifies, neurological tics occur in interictal periods.  Neurologists call iot 'forced thinking'. I retain information I’ve seen, read or heard and it repeats on a loop between seizures, more so as the seizures tighten in clusters, it feels like an alien invasion of my neurology. So I try to reply as fully as i can and close matters, to most comments, to avoid this. Anything ‘unfinished’ will be the loop for that night.

Avoiding this is difficult to do if the person commenting is tinged with the belligerent persistence associated with social media trolling and ignores attempts to explain why it is dangerous for me to persist, both in terms of where my cognition may lead me in reply and in terms of interictal impact later, which in turn can lower my seizure threshold. Still they persist despite pleas to stop and urging to publish their comments in another piece rather than on mine.

I consider the failure to understand the explanations, or wilful ignorance of them, the wilful ignorance of neurodiversity and a hallmark of the inherent privilege and complacency of neurotypicality. The risks involved to my person through the direct physical repercussions of other people’s ignorance is the main reason I don’t do much personal social media, I have to keep myself safe and their opinion really isn’t worth the risk. I also have a tendency to always be the guy speaking out against any form of bullying, wherever I see it, online or in the real world, and have taken too many risks to do so. Social media is where cowardly bullies lurk aplenty behind keyboards, neurotrash weilding neuroprivilege like virtual claymores, cutting through to the actual.

Kiltr wasn’t like that, isn’t like that. Some members, an extremely small minority are, a very small percentage of the time. Compared to other platforms Kiltr is still a veritable civic and civilised oasis!

Unfortunately though, just such a situation arose between this writer and a chief representative of where I found that noisy minority. I tried a few different tacks to minimise the impact of what I see as a distinctly male, infantilised approach to debate. To my shame, on one occasion I even resorted to mirroring their behaviour; in my slight defence I fairly soon realised the futility of the gambit, relented and published a counter piece. I have never been afforded the same courtesy.

When someone grows increasingly belligerent whilst becoming more reductive in their reasoning, following an oversimplified syllogistic logic (‘Most climate change science is derived from studies of increases in levels of CO2/ I know CO2 is a only trace constituent gas in the atmosphere therefore most climate change science must be wrong – including this writer for agreeing with it’) and ignores pleas to not comment any further, refuses to prove their convictions by publishing anything, but continues to hector and badger repeating the same lines in other ways, to the point where, not for the first time, I have not only had an increased seizure count as a result but have found myself calling out their redundant arguments between seizures, for nearly three days, I simply can’t take the chance their ignorance may impact in the same fashion again. I have far more important things to do.

If you've found yourself here, thanks for reading, for considering what may be a widened lexicon for you.  Try to be understanding of the neurodivergent and the constraints of neurotypicality, maybe more so in the froth of social media, support the neurodiversity paradigm and the Neurodiversity Movement in all its guises by promoting greater understanding and speaking out against discrimination and discriminatory practices wherever they may lurk.