Question for #ActuallyAutistic and #ADHD ers, as well as UK HE specialists and lawyers… I’m wondering if it is a breach of the UK 2010 equalities act to deny students reasonable accommodation until they have formal diagnosis of their neurodivergence?

I gather waiting lists for diagnosis are in some local authorities more than 3 years (eg an entire University degree) and the diagnostic instruments authorised for use in most cases (eg ADOS) are known to be significantly flawed (disproportionately denying diagnosis at rates of greater than 2x to non-male, non-cis and non-white folx).

I’ll post later on a deep dive I’ve done into HESA data on underreporting of invisible disabilities in British Universities which is pretty shocking.

But my key curiosity for now is whether it would be reasonable to suggest that Universities are risking viable legal action based on their disability and accommodation policies. It seems that the moral arguments are often less effective than procedural and legal ones, so just vetting tactics of resistance that work within these cultural dynamics…

For those who are wondering, you can find the specifics of the act re: disability here: https://www.gov.uk/definition-of-disability-under-equality-act-2010. A disability which qualifies is “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”. I know of some conditions which are de facto be self-certified, but this has always been problematic for autism which is far more medicalised and controlled as a category.

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I’ve been thinking quite a lot this summer about Autism/ADHD and digital accessibility. I’ve experienced a huge amount of personal friction and stress around the various digital tools we’re given, the instability around our offering, etc. but have struggled to articulate what exactly the underpinning source of that challenge is. I suspect there will be some conflicting or diverging needs coming from colleagues navigating similar impulses in different ways. One key issue, I think is that the current model works off of stereotypical presentations and is not drawing actual ND people into the design process.

One of mine big frustrations is when IT tools change their layout just “cause”. I am constantly cursing “try the new outlook” messages which keep popping up with increasing aggressiveness. When I know where stuff is, I can use it really efficiently. When stuff gets moved around, esp. without warning, but also without any functional benefit (e.g. rebranding), it takes energy to reorient, and then friction for several weeks as I get used to the new pattern. Way too many spoons for something that has no link to actual changes in work practice or productivity.

Approaching software from a ND perspective, interface design is really important. Good design has a kind of flow which can make work a joy. I don’t think this is unusual or uniquely neurodivergent as we’ve all worked with an app that made us want to throw a device across the room. But, bad interface design can be literally painful for ND folks to navigate (there is scholarly literature around good UX practice here). All that to say, putting in the time to learn an interface is a major investment of energy. With that in mind, I completely resent unnecessary interface changes that aren’t attached to feature enhancements. Changing the “look” of a piece of software for the sake of an arbitrary rebranding exercise may seem innocuous for many people, but it can actually be a pretty cruel thing to inflict on autistic end-users. So it’s with this in mind that I’ve got a question for the experts here… Microsoft wants me to “try the new outlook for Mac”. I have tried it and prefer not to bother as it is an unnecessary cosmetic change. Microsoft pretends that I have a choice not to adopt this change, but then badgers me with reminders every time I open the app. I have changed and reverted back several times as these “hints” escalate to enforced demands. TBH, if Microsoft can’t figure this all out I’m going to just have to find another email client, as this is the third arbitrary redesign in the Outlook UI in 5 years.

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I’ve spent part of the day yesterday looking into HESA data on staff and students who are reported to HESA for their annual data collections as having reported a disability. The results are pretty stunning.

Quick headlines – general:

According to HESA data, reporting re: invisible disabilities is astonishingly (at least to me!) low. The HESA categories are not great, but bracketing out concerns there for a moment, here’s what we have:

“No known disability/unknown” (falling very slightly year on year until last year) – 2014/15: 95.67%, 2020/21: 94.04%, 2021/22: 94.22%

“Mental health condition” – Sector wide this is reported as a disability for less than 1% of all staff on typical contracts and seems to be falling: 2020/21: 0.93%, 2021/22: 0.77%

“Social communication/Autistic spectrum disorder” follows a general upwards trend:

2014/15: 0.04%, 2015/16: 0.04%, 2016/17: 0.05%, 2017/18: 0.06%, 2018/19: 0.07%, 2019/20: 0.09%, 2020/21: 0.11%, 2021/22: 0.12%

Brief commentary:
Upwards trends are nice, but if we apprecaite that actual prevalence is probably 2-5% of the population, at this rate, the sector wouldn’t even get to 1% until 2075. We can and should have a chat about whether staff should feel like they need to report their autism as a disability, and maybe in a perfect world we wouldn’t need to. Or maybe in a perfect world disability wouldn’t be stigmatised and there wouldn’t be a downside to asking for accommodations. In any case, we are looking at rates of reporting that are exponentially below the actual rates of prevalence (prevalance of “mental health” e.g. low mood or clinical anxiety is generally accepted to be in double digits). Similar realities seem to hold for “Specific learning difficulty” (which I think is meant to be a proxy for dyslexia) and “Another disability, impairment or medical condition” categories. I’m not sure where ADHD is hiding in there

I was inspired to poke around in this data by a recent study by colleagues in the USA, which examined the increase in Autism prevalence data. cf. here: https://www.spectrumnews.org/news/u-s-autism-prevalence-continues-to-rise-as-race-and-sex-gaps-shrink-new-stats-show/

As many of you will be aware, prevalence data around autism spectrum conditions has been a soul-destroying ground for conspiracy theories and dissemination of false narratives about an “autism epidemic”. A range of researchers have refuted this over the years, but this study in particular emphasises the way that prevalence figures are increasing primarily due to improvements in diagnosis to counter bias around sex and ethnicity in diagnostic tools. It has become widely known that (obvious in retrospect given the spectrum concept!) that autism presents differently for different gender identities, and historically autistic Black and asian youth have been diagnosed with low IQ instead of autism, so the pool skews towards persons racialised as white as well.

Quick headlines – intersectional elements:

When we compare prevalence (and I’m just going to use autism as an example here, but we could do others) we see signs of this inequality: For 2021/22 AY, female staff = 0.08% reporting, male staff = 0.11%, roughly a 40% difference. That’s not great and seems to confirm that prevalence in reporting maps onto more general gender inequalities. If we look at ethnicity, it’s even more severe. Only 0.04% of persons who report their ethnicity as “Asian” also reported being autistic. These numbers are so small that they are statistically unreliable as HESA anonymises by rounding to 5s. So in 2021/22 only 5-10 people in the ENTIRE higher education sector, this is all staff both non-academic and academic reported autism as a disability. For staff who identify as “Black,” the count in 2021/22 is 0. This means that whomever was being counted as the 1-5 persons in 2020/21 either left the sector or stopped being counted.

The same patterns hold for students:

HESA data for UOB students from 21/22 shows only 0.20% of “Asian” students (6-10 total) 0.30% of “Black” students and 0.87% of “white” students identify being autistic as a disability. Again, for UOB students in 21/22, 0.40% of Female students and 0.96% of Male students. Among students who put down their sex as “Other” for HESA data sector wide 3.24% also reported autism as a disability.

For every category where I looked at UOB data against sector averages, UOB is below the median Half of the sector wide averages in some cases. This intensifies quite sharp questions I already had around why staff (like me!) choose not to report a disability to Uni HR, and by extension equality around who gets to access accommodations, and behind the scenes, cultural and structural injustice around access to diagnosis. It also sharpens questions raised above around the importance and salience of self-diagnosis.

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I’d like to argue for a pluralism of human rationality, that is, that different persons deploy forms of reasoning which are structurally quite different from one another. Such a statement seems, on the face of things, to be obvious, and so it is interesting to note how we do not seem to deploy it in everyday interactions.

What are these differences and how are they constituted?

The first form I’d describe is a difference between working from ideas vs. working from problems. I’ve encountered this in my own daily practice, with scholarly colleagues reflecting upon the ideas they find in books, deploying them as forms of arguments in a relatively free-standing way in debate. In my own mode of reflection, ideas must be situated in some kind of problem or solution context. This is not part of an intellectual programme by which I mean to establish the importance of context through a form of stubborn refusal to engage with ideas lacking in context, and it is important to establish this as many scholars I know do engage in this tactic (with my blessing). What I mean is that I cannot process information coming from various sources without being able to place it in the context of production, that is, why did this information come to be, what prompt, problem or challenge provided the catalyst for the production of this information. If I do not possess this knowledge, everythign coming at me feels very slippery and only with great and artificial effort can I put it in places which synthesise it as information and locate it within a space of understanding (and by extension long-term memory) and comprehension, as opposed to pure noise which fades away quickly.

Now it may be tempting to describe this experience as a problem, a deviation from the norm, or a disability requiring accommodation. Much of my formal learning has treated me as such (albeit implicitly in most cases), where the expectation of proper cognitive functioning was to find ways to translate information coming to me and do so in a way which was as seamless as possible for the person delivering it. This is the way that our culture of disability and accommodations can often reify difference as pathology. The trouble with this is that processing information in the way that I do is clearly not inferior in many ways. To give a few examples, because my mind is constantly looking for a problem and the context for a range of phenomena, I am a skilled diagnostician, often detecting issues intuitively ahead of others, and with more intractable problems, I am able to very quickly deploy deduction and inference (in ways that colleagues who have different ways of thinking are unable to follow without slowdown and narration) in a systematic way towards an understanding of what is happenning. Pedagogical researchers have pointed to the benefits of problem-based inquiry as a mode of teaching and learning which can embed knowledge in more practical and enduring ways for a wide variety of learners. This situation where accommodations for autistic persons can serve as a kind of “rising tide which lifts all boats” strikes me as an important thing to observe. If the unique traits which are being singled out are a problem, and by extension niche and exotic, why is it that forms of accommodation actually deploy a wider range of benefits?

This is just one of many possible examples of ways that processing information and the process of aquiring understanding can be constituted in quite different ways. For some people with the condition known as synesthesia, information is processed in terms of colours, and by extension, things with colour can literally “speak” to them. Some persons with autism have a special facility for intuitively connecting with and communicating with animals. While much attention has been devoted to the ways in which autistic communication can be “overly” literal, there are other forms which veer towards indirect significations of meaning. In some noteworthy cases, people speak using allegories and metaphors in the foreground, leaving co-communicators to process the signification of meaning.

What does this mean for us? I think there is a need to consider first how our own forms of thought and developing understanding represent a unique constellation of processes. We reach understanding with others by constructing bridges out of that uniqueness and into another which is foreign to us. That we do this every day and in every interaction is usually utterly transparent to us, until we reach forms of difference which are more challenging to bridge and require additional work. Sometimes there is a complete breakdown in understanding or communication, which has been represented in the “double empathy” problem. But breakdown in communicaton ought not be seen as a disability in one person, requiring adaptation on their part or accommodation on the part of the receiver, but an unusal level of challenge for a completely regular process.

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so there has been a lot of noise about the flight from birdsite, justifiably so. But I’m left wondering… when are we gonna raise similar protest around the ways that academia.com, researchgate.net, elsevier platforms (like PURE) are enclosing community and dampening FOSS development around sharing of research. The work is just starting folks!

I’m just gleefully watching birdsite go down in flames and wondering, how do we prep the fedi ground for when this happens on fb? Pixelfed is a totally obvious alt to insta, peertube clear victor over yt, and no one wants to replace tic-toc. But I’m intrigued that fb alt options are diverse and generally none well adopted.

Also, for the coders and academics on here, I’m wondering when we start to galvanise protest of proprietary and non-federated repositories. The tech is *out there* e.g. gitea instance federation being worked out and CKAN server federation concept developed more than a half decade ago. But we keep allowing our orgs to pay license fees for walled gardens rather than embrace commons… strange….

For those who are curious about this, see more on CKAN federation here: https://ckan.org/features/federate/ and git activitypub federation here: https://discourse.gitea.io/t/forgefed-federation-in-gitea/1157 #librarians take note!

Worth noting for those who are curious about running your own self hosted git repo which can federate with friends, a gitea fork called forgejo (which runs codeberg) is getting pretty close: https://codeberg.org/forgejo/forgejo/issues/59

I wonder what folks out there are doing for code repo? I’ve noticed a lot of migration away from now-Microsoft owned GitHub to places like codeberg. Looks like self-hosted platforms getting closer to federation and social sharing in a decentralized way… Am currently on gitea, but looking around and wondering. What are you on?!

I’m wondering if colleagues in education have been watching the #OpenBadges space? I’ve long been interested in certifying students as the develop transferrable skills in our classes (e.g. visual communication, web design, survey design, etc.) using badges they could deploy alongside their diploma. There’s so much EdTech distractions around monetising the concept and it seemed to stall some years ago. Just wondering if there’s a good option that I haven’t noticed.

One example here: https://openbadges.org. But not sure if this has been used in (non-monetised ways in) Higher Ed?

The whole field seems ripe for federated open access disruption. Reminiscent of DNS and SSL cert provision, trying to enclose digital commons by glueing revenue generation to FOSS technologies. Universities have expertise and infrastructure to selfhost and develop cert auth, creative talent for visual design. It seems absurd to pay edtech startups to develop and even more ironic to squeeze tuition paying students to “certify’ their learning rather than approach as value-add.

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I’m an amateur anthropologist at best, having taken the plunge as a post-doc in 2015. Having not taken Anthropology 101 (or 701 for that matter) I was left to consult with colleagues in various departments on the best mode of induction. Aside from “do the work” (e.g. fieldwork), a common piece of advice that I received was to read ethnographies. A lot of them. One common adage, particularly in US anthropology departments, is that a PhD student should try to read 100 ethnographies. I’ve not quite gotten there myself, yet, but found the principle to be a good one. Don’t start with the technical manuals and methods handbooks, though do consult these as well. Start with practice and studying the practice of others. In passing this advice along to students and other researchers, I’ve often been asked how to find ethnographies and get started on this journey. I’ve gradually accumulated a list of works based on my own interests which includes folks like James Frazer, Emile Durkheim, Bronislaw Malinowski, Marcel Mauss, Margaret Mead, E.E. Evans-Pritchard, Claude Lévi-Strauss, Mary Douglas, Victor Turner, Gregory Bateson, Roy Rappaport, Clifford Geerz, Talal Asad, Roy Wagner, Maurice Bloch, Paul Rabinow, Bruno Latour, Arjun Appaudurai, James Clifford, Lila Abu-Lughod, Keith Basso, George Marcus and Donna Haraway. I’ve also been delighted to discover the work of more recent “greats” like Saba Mahmood, Anna Tsing, Veena Das, Stephan Helmreich, Paolo Gerbaudo, Gabriella Coleman, and Michael Jackson. You can see my interests here in more-than-human anthropology, science & technology studies, netnography etc.

There are specialist areas not represented in the list above where you can do a deep dive – into visual ethnography or auto-ethnography (two other interests of mine), and it’s not hard to find a few recent journal articles on a given methodological niche and the trace citations backwards to the key reference points in monograph form.

If you’re looking to get into the field, it’s also worth keeping an eye, or reading backlists arising from the various anthropology prizes. This includes prizes awarded by the Society for Cultural Anthropology (including the Gregory Bateson prize).

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My current take on least subverted options for digital chat:

1. Matrix
2. Mastodon, GNU Social, Diaspora (e.g. activitypub)
3. See “honourable mention” below
4. Telegram / Signal / Keybase (centralised but virtuous)

Honourable mention (exciting, but still a bit experimental):

* Secure scuttlebutt
* DAT

“yuck” – Please don’t make me use:

1. FB messenger / whatsapp
2. Facebook
3. Twitter
4. LinkedIn
5. Instagram
6. etc., etc., etc.

I also think it’s really time to revisit human communication technologies as public utility. Seems like this should be a first
principle. To be clear I do not mean a “utility” controlled by our emerging fascist democracies, but true *public* as in developed and maintained transparently in the commons.