Now that I’ve started paying attention I’ve realised there are hundreds of little papercuts slicing in at me from a hundred directions in my workplace (zero choice in software, short-notice (and often pointless) policy changes, 300 newsletters a year I have to read, module timetabling nightmares, construction noise, random beeping sounds everywhere, nightmare venues, a zillion pointless interruptions just the minute I get into the flow), and I’m really not sure where to get started. The few times I’ve brought something up informally, reactions have been either confused or defensive. I did push for a formal flexible work plan and managed to get a compressed teaching timetable, but the whole process took two years, a half dozen meetings, three separate forms, a huge input of energy, and left me feeling like I was supposed to be deferent and grateful for that systems had been temporarily shifted to run a different way on my behalf. I had colleagues who helped me with this process who were totally amazing about it all, but the process was still pretty deflating, and the end result really wasn’t what I’d asked for, rather it got shifted to a model that other people thought I needed.

What this has left me wodnering about if a useful shift in our approach to accommodation within our organisations is not to emphasise privacy and procedure, but to be relational, discursive and perhaps find ways to draw in a mentor or more experienced self-advocate with lived experience of disability as part of the actual process (e.g. sitting in meetings with you, commenting occasioally, posing questions etc.). My main problem is that as soon as things start to get difficult, I begin to doubt myself and wonder if I’m just special pleading (and there are systems and cultures which press us into this kind of thinking). Having someone with similar experience of the world to sense check a process might be quite useful. And for other people with less tenure and experience than me, I can imagine it might be even more vital.

What tools and techniques do you use to preserve the flow (e.g. work around interruptions), lean in on your monotropic self, and mitigate challenges brought about by co-occurring bits (mood, anxiety, etc.)?

Here’s a first one to get us started: I find it takes a lot of emotional and mental energy to set up meetings. And it’s one of those things which comes at you interrupts flow and requires setup each time. And the consequence of this was that it was taking ages for me to jump in and get stuff organised even for simple one-to-ones. So I started using an online scheduling tool (first calendly.com then cal.com when calendly jacked up prices and went in a non-open direction). I created profiles for my time (e.g. when I don’t want to be interrupted, and also consolidating certain types of conversation so I can get in the flow with a series of meetings).

Using the tool had a learning curve – there were a few months where I had twice as many meetings as I could really handle in a particular interval and I had to tweak. I also found that I needed to create “public” style meeting options and “private” ones, so that friends could book in really any time they wanted with a much less restricted set of options, and certain less exciting work tasks could be put in a very specific bin. It has made a huge difference for my workflow and energy levels each week. I’ve also been pleasantly surprised to see how many (some neurodivergent) friends, colleagues and students were also really grateful to have a low-friction way of setting something up.

Cal.com opens up a website for people to click on date and time to set things up, and then automatically puts it on my digital calendar along with any special information I’ve asked for (which is very useful for one-to-one meetings with students so I don’t forget what they want to talk about). It can also do automatic reminders to people so they don’t forget the meeting and then it’s a robot nagging them and not me which is also nice.

At our University IT services migrated to a new off-premise exchange server setup last year and in the space of a week turned off all access to our calendars for external tools without warning or consultation (at least not any that I’d seen – and I would have provided a response if I’d been asked!). My attempts to explain what a severe impact this had on me fell on deaf ears. So I had three months where my diary and life were in total disarray last Spring. So I don’t use exchange for my calendar anymore. I’ve got another one offsite I use (on my own server if you’re curious). I put a message in my diary for every day of the year which warns people that I don’t use outlook for my diary. The downside is that it’s a pain for colleagues doing meeting requests in exchange. Upside is that I don’t have to worry about IT changing policies on me without consultation in the future, which I’m sure they will do.

I’ve just been reading a WONDERFUL piece of work by Sonny Hallett around diversity and why our organisational cultures resist it. Anyhow – there’s a longer form piece here https://medium.com/@sonnyhallett/counselling-for-different-ways-of-being-b89730c6ca2 which I highly recommend giving a read (also via video here: https://www.youtube.com/watch?v=irIruFqFTMc

Is it just me? I’ve noticed that much of what used to be individual emails are getting wrapped into omnibus newsletters. My working theory is that this arose as a form of communciation elsewhere (maybe the push towards mailing lists as part of a personal platform?) and has since gotten folded back into everyday work spaces and practices.

It took me a while to realise this but it dawned on me last year that this form of communication is a lot less accessible for me and that it’s a problem with noise compounded by a problem with navigation. Here’s the scenario: if I get ten emails, which are each about a single “thing” I can quickly sift pointless noise from important announcements by paying attention to the subject lines, scanning opening lines and deleting before deep dive reading. When it’s in a newsletter, I have to scan in a linear way (worse still, sometimes leaving my email application and the flow of work which pertains there for a PDF reader) and can’t sift as easily for information which is actually for me, or actually necessary knowledge. The end result is that I process the entire thing in great detail.

I think that maybe MS Teams has the effect on me of making all of life like this because there’s not much one can do to “sift” – conversations can’t be easily threaded, so you have to read everything when you’re just trying to find a reply. I’m wondering if anyone else finds this to be a struggle? If it’s just me, that’s one kind of request I need to make. But if there are others also struggling, then maybe there’s good reason to ask if colleagues doing this kind of bundling can do it in a more careful way… Just wondering which I should pursue! Thus are the travails of unmasking, developing a disability identity, and learning on the fly how to request (and be rejected) accommodations from friends and colleagues.

This gets even more oppressive when the people who are driving these changes around sending correspondence in a newly consolidated way start to set rules on how others can’t use alternative forms of communication. Please stop bombarding me with all these short emails – it’s so unhelpful just put it in the “bullitein”! or worse still, requirements about how we must continually attend to notifications on MS teams, leaving our email on at certain times of the day, responding at certain regular intervals etc. The idea that you need to just be open to a bunch of small distractions across the whole day seems about as sterotypically allistic as I can imagine. Different kinds of cognition may require consolidation of work tasks. And this in turn can make a person/worker more happy and productive to work in a neuro-affirming mode.

I’ve had three weeks of great energy, finishing things, starting things, and starting yesterday I can feel my executive function flagging. Big time. And this loops in with increased load of anxiety, insomnia, death spiral of rumination and unhelpful but seemingly inevitable paralysis on 25-75% of the things I need to get done. 🙂 And I’ve observed that some other folks are hitting the wall now too. I’ve been watching this cycle happen to me for a while with a new level of self-awareness and thinking a lot about how to put some supports in place for when these things happen. Or better yet, focussing on forms of work that don’t contribute to the cycle and avoiding those that do. But this is VERY hard to do, in part because, at least for academics, the “lone hero” executive model seems to be default.

I’ve identified two possible long-term wellbeing helping fixes which both require structural change: (1) shared co-leadership so one can pool abilities & inabilities with a colleague (ideally who already knows you well enough that you don’t have to spend months educating them about autism before starting) – (2) (at least for academic staff) working in partnership with support staff to divide up work tasks and planning. Having another person in the loop naturally helps with executive function as someone else can mind deadlines / milestones and chase me if I’m flagging, breaking the loop (sometimes). Both both of these models seem to be REALLY hard to implement in a lot of higher education management structures.

In these organisational cultures leadership can’t be shared, or has unhelpful externalities. It can hamper promotion prospects for your co-leader if they’re more junior (or female) as bias prevents people from seeing achievements as shared. But also workload allocation models prevent this practice as the work doesn’t split 50/50, but ends up being a bit more like 65/65 as there is additional labour in being collaborative (I think the overall results are improved, but the practice is not “lean”). And then sometimes there just aren’t enough people around. And you have to be careful about not using & abusing your allies (if you have them).

I have been successful in forging partnerships with support staff at UOB, and I have massive gratitude for those folx who have been willing to come alongside, listen, and share their energy in making great things happen for students and ressearch projects.

BUT it has become a habitual pattern that when I do find a successful partnership with a colleague where we can divide up tasks in a helpful way, have a change to get to know one another and develop a good flow – within 3-6 months of sorting that out, they’re seconded to a new position in a different team. This has happened to me a half dozen times. And it’s not just inconvenient, but actually there is fallout, as I can’t manage a portfolio solo that I can with collaborators, and then I have to cancel events and walk back activities that I’ve commited to. And it’s hard to explain why this is the case. I’m not sure why so many Universities have such a revolving door approach to support staff teams, but this seems to be endemic. So I’ve found myself starting to avoid forging partnerships like this because the risk is just too high. And you can’t ask a person if they’re going to stay in a post for more than 12 months, as I think that’s impolite?

One of my goals for this year is to get my ambient environmental sounds sorted. It’s been quite revelatory for me to discover how much noise causes persistent baseline stress which saps extra reserves I might need for the “big stuff”. In terms of equipment: I’ve got some conspicuous noise cancelling over-ear Bose headphones which were a surprise guess-what-you’re-probably-neurodivergent solidarity gift from a family member. These are great for total blocking, and provide a certain “don’t bug me with unsolicited small talk” vibe which can be useful when grocery shopping. I’ve also got some Flare “Calmer” earplugs (https://www.flareaudio.com/products/calmer), but to be honest I can’t tell if the effect is real or just placebo. I’d like to identify a good solution in terms of more discreet notch filter / earplug tech for noise nightmares like department away-days and welcome week tea events which always seem to get booked into huge echoey rooms. For the noise sensitive folx on here: what sort of kit have you got that works for you? Has anyone found creative ways to get their equipment funded? Have you managed to get your team to put carpet on walls in all the rooms?

…that misophonia is a thing and that the emerging clinical definition indicates a sharp and involuntary reaction of anger (and not just anxiety etc) in reaction to certain sounds. This definitely explains some things for me!

https://www.entandaudiologynews.com/features/audiology-features/post/decreased-sound-tolerance-in-autism-understanding-and-distinguishing-between-hyperacusis-misophonia-and-phonophobia

One research team made an online test you can take (I love doing tests online!):

https://www.misophonia-hub.org/studies/sussex-misophonia-scale-adults/start

This is the text of a talk I gave to a group of colleagues at the University of Birmingham as part of a really fantastic interdisciplinary workshop on “Imagining Wellbeing” on 12 July 2023. You can download my slides here.

[Slide text during intro] “Any future society that has embraced and been transformed by the neurodiversity paradigm would be distinguished by two fundamental qualities: it would be neurocosmopolitan and it would be neuroqueer… just as heteronormativity can be queered, so can neurotypicality: we can subvert, disrupt, and deviate from the embodied performance of being neurocognitively ‘normal.’ That’s neuroqueering” – Walker, “Towards a Neuroqueer Future”

My presentation is a riff on Nick Walker’s neuroqueer heresies, applied towards thinking together about how we might form ethical imaginaries around digital interfaces.

[Slide text shown during part 1] What are the neuroqueer heresies? There is no normal. Normal is oppressive. We are failing. Difference and divergence is good. Care is complex.

Part 1: theory

First, here’s a way for us to think about different models of wellbeing:

  1. The ways that we think socially and institutionally about wellbeing are troubled by a widespread deference to binaries (well / unwell), which are then purified (purged of outliers who cannot be categorised in a stable way as either) and then moralised – the “bad unwell” and the “good unwell”. There are symmetries here with narratives around blackness, immigration, and gender identity. (footnote 1 below)
  2. These binaries are mobilised (to be fair, usually without malice or intention for harm) by a professional class who manage risk and wellbeing, transforming the idea of difference into a neoliberal capitalist mesh: this is “diversity” for marketing brochures which can be appropriately aligned with “brand” and “image” and correlate to forms of need and deprivation which can be easily categorised, commodified and drawn into a logic of efficient service provision. Bad unwell people are not “easy” to help.
  3. This is a model of care without complexity which deploys models of wellbeing which do provide meaningful benefit for certain cases, but serve to further marginalise, pathologise and economise divergent edge cases. It is important to be aware that this process of punishing outliers is initiated by our accounts of “wellbeing” and inscribed by narratives of successful care.

So there’s a very quick version of social critical disability theory. With this critical apparatus in place, I’d like to – taking a cue like Nick Walker does from Audre Lourde – take these new tools towards the process of dismantling the masters digital house. For the sake of this reflection, I’ll be focussing on “digital” in reference to digitized communication and the software interfaces which overlay it. My argument is that “the interface” in the singular is an anti-diverse mechanism and that our implementation of that tool serves a homogenising agenda of containment for control of divergent body-minds.

The digital can facilitate spaces of divergence and experimentation but digitality can also facilitate homogenisation and economisation. On one hand, we can see a drive from the start of the internet age towards tools which streamline human communication and facilitate connectness.

Part 2: a neurodivergent digital aesthetic

Every design culture which produces digitial tools (e.g. google, microsoft, amazon, and apple) has an aesthetic, a certain kind of visual, and an underpinning ethos which drives that visual presentation enshrined in interface design. These digital aesthetics are a sort of assemblage of cultural norms, notions of beauty and flow drawn out of the lifeworlds of particular kinds of body-minds. When a divergent body meets these assemblages, friction results. Everyone will have experiences with an interface that “just works” and also with interfaces which you find frustrating and disempowering. Claims of neurodiversity force us to appreciate that with respect to any enforced interface, process, built environment or user experience, there are a range of responses ranging from love, mild discomfort and irritation to panic, immobility and breakdown. This can be the case in an obvious way for something like stairs, but it can also be an effect of disability in the context of more intangible mismatches like those found in interface aesthetics. If I am correct about this suggestion that disability justice necessitates a pluralistic approach to digital interface(s), then when interface choices are homogenised and enforced, injustice is the result.

I’m one of the many users who have acute sensitivities to friction in user interface and process design. This is, in part, because autistic body-minds like mine are attuned by flow states and are carried forward by inertia. I often find interface and process design uncomfortable, confounding, and even panic-inducing. Working with a conventional medicalised understanding of disability, one might be expected to conclude that some aspect of this intrinsic functionality represents a form of impairment which needs to be pitied and accommodated through lowered expectations. “Poor Jeremy”, one might say, “just struggles to operate the computer. We should give him extra time to complete tasks.” Nevermind the possibliity that a person might thrive and exhibit forms of expertise in a less authoritarian digital regime.

For the sake of this paper, I am concerned to highlight the symmetry between the ways that disability support and IT services work in large neoliberal organisations. I appreciate that this suggestion may seem a bit exotic or strange. I think that it is important to appreciate the ways that our awareness of inaccessibility is often suppressed. In the context of the digital, we can appreciate the ways that Zara Dinnen speaks of the “digital banal” as a way of pointing to “the condition by which we don’t notice the affective novelty of becoming-with digital media. In other words, “the way we use media makes us unaware of the ways we are co-constituted as subjects with media.” As Dinnen argues, the problem with our use of technologies is that we often don’t notice quite how much they shape us and our patterns of life – all the way down. The consequence of this is that we fail to grasp the imperative behind requests for reform (often re-categorised as “complaints”). Organisational management practices in democratic societies can tend to be weirdly undemocratic (underwritten – I would argue – by distorted forms of natural theology) it can be top-down, homogenising, and driven by a commitment to efficiency. As a number of neomarxist theorists have observed, these neoliberal social formulations can also be powerfully hegemonic: automatically assimilating or obliterating proposed alternative futures as they arise.

We would have to appreciate how the seemingly innocuous “Microsoft Teams” (and I apprecaite that it even feels silly to mention it in a paper like this) is a political instrument driving behaviour management, exclusion and surveillance. The flip side of my claim around the tacit nature of the formulations and social demands embedded in platforms and interface design is that the effects on human outliers of these formulations are vastly underestimated, even suppressed. So, we may want to say that an interface is inconvenient, but we would never allow the suggestion that in some of these hegemonic formulations it causes trauma and that the active perpetration of trauma through social systems is a form of oppression. Can we allow for the ways that the enforcement of a digital interface can cause trauma? Why do we defend our institutional choices around platform and interface so fiercely? I see this institutional reluctance as a form of opposition to Queerness.

Part 3: neuro-queering the digital

In trying to forge an alternative digital imaginary, I turn to Nick Walker (and a fair few other disability justice activists) who call for the work of neuro-queering. This will ultimately require changes on the level of our ontological convictions in order to allow for changes in process and social organisation of work. These are all underpinning changes which will allow us to account for pluralisation and diversity.

A neuro-queer digital has a plurality of interfaces which carry culture, cognition and difference in various ways. There might be a “cozy” choice here for everyone. This requires modular tools and customisation against centralising forms of aggregation. This is because, I would argue (along with other indyweb activists) that the more individual features you stack together which share a particular aesthetic, the more hegemonic that aesthetic becomes. Promoting digital tool modularity, especially with third-party / standards based access to data and application backend, is a digital accessiblity practice inasmuch as it enables end-users to make choices regarding tools that work best for them.

In a related way the hacker/maker community has been a safe haven for neurodivergent techies for years now (myself included) in part because of the accessibility difficulties presented by mainstream options. Accessibility through hackability requires a developer to expose the guts of their system for modification, potentially beyond their own imagined purposes. The utter baseline here is a good API and open-source code, but one can go much further, collaborating with end-users around experimentation and design, presenting early beta with rough edges, and supporting end-user communities to “push back” and make requests.

This sounds simple enough, but it leaves me wanting to ask the question of why most HEI organisations have gone in the opposite direction – adopting expensive proprietary, highly-integrated third party platforms which are selected in the context of covert high-level product adoption processes. And asking this question presses us into wider issues of structural change which are a prerequisite for meaningful digital accessibility.

I want to suggest that two major blocks to the kinds of organisational culture which can support digital experimentation, open tools, and modularity are hierarchy and beurocratisation. The role of the IT Manager (and I say this as someone who has occupied this vocation) as it has evolved is to standardise and streamline management of IT infrastructure. Seen in this way, the key objective here is to maximize interlocking of tools so that costs can be aggregated and potential expense of risks minimised. This results is a push for outsourcing, the enforcement of tool homogenity and surveillance of end-users towards maximally programmatic rule-sets. If we use the definition of accessiblity I’ve defined above, this role can become an agent of digital inaccessibility and a barrier to disability justice. To give another example, in a more complex way, the “Digital Accessibility Specialist” (or the end-users who are co-opted to function as a free proxy for this role) can be made into compliance engineers. If you’re handed the Microsoft model, do you embrace it and seek to make it as good as it can possibly be for your users? This will have the result of further enforcing the hegemony of those tools.

There is a lot of exciting work emerging in creative firms around leaderless teams and more collaborative forms of deliberation around process and design. The digital justice challenge here is to shift the focal point of IT accountability back to all end-users and enable the cultural changes which support such a shift. Costs and liability can be minimised, but if narrow minded cost-benefit calculus drives process, there’s an inevitable hit on creativity, flexibility, end-user satisfaction, productivity (though it is important to be transparent about how such a thing is measured) and ultimately wellbeing for disabled staff. To head towards a concluding point: we cannot undertake these forms of digital life without the requisite political and cultural shifts towards digital justice. Much hinges on what sort of “wellbeing” we imagine and who we imagine it for.

Footnote 1: cf. Aileen Moreton-Robinson, The White Possessive: Property, Power, and Indigenous Sovereignty (U Minneapolis Press, 2015), “Patriarchal white nation-states and universities insist on producing cultural difference in order to manage the existence and claims of Indigenous people. In this way the production of knowledge about cultural specificity is complicit with state requirements for manageable forms of difference that are racially configured through whiteness,” xvii.

I’ve been thinking about Four Thieves Vinegar collective work lately. It’s an inspiring project (at least imho): https://fourthievesvinegar.org/ Social justice meets DIY, design hacking and hardware all towards anti-capitalist access to medical care. But I’ve also been wondering about what it would look like to do this for mental health and neurodivergence. What would it look like if radicals subverted psychometric assessment for the common good in the same way?

I know folx in the community do tend to use open sourced tools like https://embrace-autism.com/ in this kind of way. But what’s the next steps to either (a) develop an instrument that can be authorised for use as a self-certified dx or (b) pry the process out of the hands of monetising forces like Pearson. Truly there are hundreds of thousands of people who are being denied access to legally mandated accommodation and care because they can’t get access to assessment.

Let’s set aside for a moment of course the problems with the notion of “experts” gatekeeping in this way, but hey maybe there’s a hack for that too? Long game I see a lot of promise in the power threat meaning framework (cf https://www.bps.org.uk/member-networks/division-clinical-psychology/power-threat-meaning-framework) but I think we’re a long way off from mainstreaming that approach…

#psychology I’m looking at you here… Anyone want to do a bit of hacking?

I’ve given two talks this summer to colleagues in my school. This arises from work I’ve been doing learning from and supporting neurodivergent students in Philosophy, Theology & Religon departments in an ongoing support/tutorial group since 2020. They’re brave and amazing students, and I’ve learned so much from them! I realised it was high time that I shared some of that information with colleagues, and it was a lot of work synthesising what I’d been thinking about and trying to open it up to others, particularly thinking towards others (neurodivergent or not) who hadn’t been on the self-learning and unmasking journey I’ve been on.

Do please feel free to have a look at the slides and let me know if you have thoughts. I’ll be continuing to revise and present this work.

https://jeremykidwell.info/slides/presentation-20230614-teaching_neurodiversity/presentation-20230614-teaching_neurodiversity.html#1