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June 2025

Why. Don't. These. People. Listen?

You can be in-work and get PIP. It's a welfare payment for disability and the extra costs that incurs. Not an out-of-work benefit.

Luka just managed to nip out the front door when it was open for a second and took himself off for a walk down the road.

He's also discovered that he can jump the stair gate.

Doh.

This is hugely important. It's no conversation about us, without us.

I bet they have the conversation anyway.

The most ridiculous thing that Bluesky lacks is a client that saves your place in the scrolling. That's it. Killer feature.

Honestly, this is the response I've seen, face to face. Even if it's subconscious, a lot of people seem to be of the opinion that if you are disabled, you must have done something to deserve it, or not tried hard enough.

On the welfare bill "concessions": they're sick. Restricting it to new claimants only is meant to get existing claimants on side - "phew! I'm safe" - while throwing the newly disabled under the bus. It's disgusting and divisive. But will also affect existing claimants at reassessments.

The simple fact that most people do not want to confront is that it COULD BE YOU NEEDING IT at any point.

But research shows that this basic fact does not increase empathy with disabled people, because people do not want to believe it.

The whole point of these "concessions" is:

1. The people protesting are on PIP.
2. Make these people feel safe (for now).
3. Thereby eradicate protests.
4. Subject those people to the same criteria at next assessment.

Seems deeply troubling to implement. Friends taking photos of each other. Photographer owns copyright to the snap, but person photographed has copyright of their own likeness in the picture?

Bang on.

Why does it make a difference whether it's new applicants vs those already on it? It's just a craven attempt to get those already on the benefit on-side.

"We're not carrying out an impact assessment on how many people we'll plunge I to destitution because our objective is to get people into work."

But the benefit you are cutting is not a work-related benefit. It's purely to do with disability need.

Appalling video.

This is an irresponsible interview in the context of the coming cuts, because PIP is nothing to do with work. It's not means tested. It's about the extra costs of living while being disabled.

In 2016 - almost a decade ago - I was made full Professor. I then almost immediately had a stroke. Great.

The damage was to my speech perception neurology, which has improved a lot since. But recently it has worsened, again, as they warned it might. I've started using hearing aids once more.

This is frustrating but also cathartic to admit. I was having to ask my wife to repeat almost everything and it was growing tiresome for both of us.

I have a Roger Phonak directional microphone aid and it's pretty darn good. The person I'm talking to wears it and it isolates and amplifies them.

The other problem I had after the stroke was with sight. This seemed to suddenly degrade and be on a downward slope. This had also stabilised but I'm having some strange rapid changes in sightedness now. Worrying but not top of my list of problems right now.

Predictable - as I said last year - but there's a definite conflict. If using the texts is fair use, but having them for that purpose is not, then it's a legal right that it's impossible to use? Or are they saying that to avail of fair use requires a license now?

https://www.theguardian.com/technology/2025/jun/25/anthropic-did-not-breach-copyright-when-training-ai-on-books-without-permission-court-rules

OK, this piece gives some clarification.

It's OK to digitise a print book that you've bought and then train AI off it. You can't digitally pirate a book or use a born-digital copy to which you don't have a license.

https://arstechnica.com/ai/2025/06/anthropic-destroyed-millions-of-print-books-to-build-its-ai-models/

Today, I've rebuilt Knowledge Commons to fix a bug when deleting sites. I've tracked down a strange auth/Bearer token bug I had in InvenioRDM/Flask. And I've fixed a bug in our new OIDC/OAuth flow for refresh tokens. I have to tell Bluesky because Mrs Eve says it's a different language 😂

Today is some serious work digging into the InvenioRDM authentication code while listening to one of my favourite albums of all time

The front cover sleeve and vinyl album record of Fluke's Puppy

One of the other things people don't know about haemodialysis is just how long it takes to get on and off the machine. I do 8hr sessions, but it takes at least 50 mins to set up and 50 mins to disconnect and clean/disinfect. Much closer to 10 hours total.

Also, if there's a fire, you're in trouble. I think I could do an emergency disconnect in a minute, but it would not be sterile (huge infection risk with a central line poking out of my chest) and it would mean I lost a whole circuit of blood and would need to go to hospital.

But anyway, gone are the days of just hopping out of bed. No, it's now 20 mins of syringes, line locks, disinfecting the line, flushing back the blood circuit etc and then 30 mins of disinfect. Good times.

Finally, you can't just let the dialysis machine run longer in the morning if you fancy a lie in. The therapy ends at a specific time and you have to stop the machine then so it doesn't remove too much fluid. Basically, bedtime and wake up become very regimented, time wise.

I did training with Luka tonight and it was very hard going. My back and feet are so inflamed that I had to do lots of the session sitting. They also adjusted the "hide and recall" game so I had a vertical hiding place behind an upright table. But he so loves it. Makes the pain worth it.

I have been saying for ages that US courts are going to rule that AI training is transformative use and therefore fair within copyright.

In immense pain today. Will probably need to do most of Luka's training class sitting down this evening. Me, not him. Though that is one of the commands.

Also had my pip assessment this morning. Have totally no idea what they will say or decide. Have heard so many negative reports.

I mean, you'd think it was quite obvious. If you need a therapy for 14hrs that requires supervision, you have the points. I do 40hrs of dialysis that needs supervision by a carer. Should be quite a clear case? But I just worry it won't be and they'll find something.

Had an email from an advanced high-school student who'd cited my work in her thesis. She had asked whether I could read her thesis on Pound and translation, which I didn't really have time for, but I gave her feedback. The job doesn't make time for encouraging tomorrow's kids, but it's crucial.

"Today, the value of our currency lies in the belief... that the United States is credible and will pay our debts, that we would never default on our Treasury borrowing, either explicitly, by failing to pay, or implicitly, through a huge bout of inflation"

https://www.nytimes.com/2025/06/22/opinion/happy-birthday-money.html

"our economic success rests on institutions that command broad and lasting confidence. Without them the social construct we call money would evaporate and we would all be left holding a pile of beautifully decorated but otherwise worthless scraps of paper"

Whenever we have hot weather, I am bombarded by texts from Southern Water telling me to save water and to use for washing/drinking only. Sorry, SW, but I need to run a dialysis machine overnight. Also, isn't it your job to ensure there's a constant supply? Or just to compensate your shareholders?

Privatizing water - the one thing everyone absolutely needs to live - is one of the stupidest things we did as a culture.

Poor Luka (a dog) is terrified of this morning's thunderstorm. He is charging about the house, frantically, including places he never normally goes, such as upstairs. I guess that makes him Luka on the second floor.

This weekend's reading

This book is way too descriptive for my taste, for the most part. It just gets too bogged down in telling me about episodes I already know. EXCEPT for Chapter 7, on the Borg, which redeems the whole book in my view!

The front cover of Susan M. Bernardo's /The Self and Community in STAR TREK: VOYAGER/".

The world is bleak and our democracies have a serious democratic deficit when it comes to foreign policy (and elsewhere tbh). Just hoping we're not about to experience full-blown WW3.

If you want to do this, such a database MUST be strictly for clinical use, never for sale, and particularly never used for insurance cost purposes.

Also, the police will be slobbering to get all over it.

Basically, could be medically helpful, but so many risks.

https://www.bbc.co.uk/news/articles/c1ljg7v0vmpo

And eugenics.

Thanks to @ernestopriego.com for the link

There's a lot of good stuff in here that can basically be distilled down to: instead of a fancy but really glitchy new tech solution, just hire skilled people (eg translators) and provide support that works. And don't use "it helps disabled people" as an argument for AI.

I would add that I have one quibble: copyright violation is not "stealing" or "theft" and they have different legal contexts. Further, in the US context there is a good chance that AI training is transformative use, and therefore legal under the copyright framework. That's untested as of now.

Good thread on how the questions of philosophy at any given moment tend to spill out into their own disciplinary territory. Suspect there are metaphysical questions asked by some branches of philosophy on which such progress is NOT possible, but an interesting thread nonetheless.

Today's fun is urgent hospital appointments to deal with this wretched anaemia. First up is intravenous iron.

Mrs Eve has not only knitted an emotional support chicken, but now appears to be moving on to geese... They are pretty amusing!

A knitted goose A knitted chicken

Then, furthermore, if there's ever a problem with my dialysis machine, they normally get someone to my house within a few hours. Today I've got its six-monthly service, but I still find this whole kidney team incredible.

I must say, my NHS kidney team are amazing. Blood test at home on Sunday night identifies severe anemia. I've now got an appointment on Thursday for an iron infusion. Consultant has got back to me, via the nurses, to up my EPO hormone which produces red blood cells.

My renal nurse has just written to me expressing concern at my haemoglobin level. 120 to 180 is a normal range for this. Below 120 is anemia. I am at 89, which is apparently pretty low. This will explain why I am so unbelievably tired.

Transparency is only needed where there is distrust. If you trust someone, you don't need them to prove themselves.

The one thing I wish people would learn about people in end-stage kidney failure is about not repeatedly offering drinks!

We have to be on a strict fluid restriction. It's really annoying when someone offers you a drink, you say no, and then: "Aww, GO ON!"

Please stop tempting me. I'm thirsty!

Thomas Pynchon, Gravity's Rainbow
David Grossman, See Under: Love
Jennifer Egan, A Visit from the Goon Squad

honorary mention to Percival Everett, Erasure

No idea why I am doing this other than to procrastinate on book writing :P

I was disappointed not to win the £208m euromillions draw. Apart from helping a lot with my disability (lift in the house), solving all my friends' and family's financial woes etc., I really wanted to set up and run an amazing dog rescue shelter. We'd have sofas for all the dogs and lots of love.

PS: I know the lottery is a statistical illiteracy tax. I still love to dream. And the dreams are always about who and what we could help in the world. Sure, there's some easing of my own problems, but it's really what good we could do. I'd just love to help more unloved dogs (and some people).

Terrible news. I only knew Simon professionally and at a distance, but I will miss his presence, online and in person.

Our poor little 10-year-old tri-pawd doggie Robyn has stage 1 kidney disease! (Ironic as I have end-stage kidney disease.)

In reality, this doesn't mean that much. A bit of kidney function loss. No symptoms. And she is quite old. But we'll put her on a special kidney diet now and go from there.

Robyn, a brown and black dog, here facing the camera with her tongue sticking out

Found out this morning that my dialysis machine definitely does run Linux! Ha! Doom on Dialysis is a real possibility.*

* actually, no way, this thing keeps me alive. I'm not messing with the tech.

#ThanksBrett a belated tribute to @brettbobley.bsky.social. I will never forget the generous invitation Brett extended to me to speak to the NEH team about green open access mandates and how to get there. We eventually had one, almost. The world will be poorer without you, Brett, at the NEH.

It's my wife's birthday today so I am taking the day off work for some elite highbrow entertainment. We are going to the theatre for the first time in half a decade. To see... Kinky Boots The Musical 😂👢

On the spending review:

"there will not be noticeable big cuts but equally nothing will be funded adequately—any new initiatives will be money shifted around within departments"

From Research Professional's "8am Playbook" (which is well worth a subscribe)

So I finally plumped for it and applied for the disability benefit PIP. I now require 40hrs of dialysis per week and need a carer to be present that whole time. This seems to fulfil the requirements.

For this, I now have a telephone assessment. Anybody have any tips or info on what to expect?

Must be because they're "Mickey Mouse" courses and definitely nothing to do with defunding a critical media establishment.

Been reading Jamie Bartlett's /The Dark Net/ this morning - and it's disappointing, for me. Just really about the "dark" areas of the web, using "dark" to connote seedy and unpleasant, rather than actual hidden services.

The cover of Jamie Bartlett's /The Dark Net/, which has the text and some blurbs

I awoke at 5am. This was 45mins before my alarm, thanks to dialysis, so I decided to start doing physiotherapy warmup. I have some newly manifesting back pain that is worst after lying asleep for hours and then trying to move, so the physio has given me a gentle wakeup routine that I must undertake.

We think it is a lumbar tear or sprain. Hence, I was very cautious. Bent my legs ever so slightly with the intention of gently swaying the knees from side to side.

My god. The pain was beyond description. I screamed out and scared the life out of my wife. Honestly, it was awful. A very different type of acute pain to rheumatoid, which is dull, insistent, omnipresent, crescendoing/cumulative. This was intense, sharp, instant, agony.

Thankfully, I eventually managed - with the help of morphine - to get the legs moving, but it's hard to describe how bad this pain is!

I've used LibreOffice since 2008, with only occasional recourse to MS Office for formatting on docs shared with Windows users. Such fallbacks have been increasingly irregular, too. Written 11 books on it. Such good free and open source software, with no AI. Works with Zotero.

The physiotherapist suspects that I have torn a muscle in my back. It's very sensitised and goes into incredibly painful and paralysing spasm at the slightest provocation.

I may need a corset to support it... 🤔

Today's schedule is walking the dogs, adjudication of Cambridge MPhil degrees, physiotherapy, seeing /The Salt Path/ (feat. Gillian Anderson!) at the cinema, another dog walk, possibly some book or blog post writing. Collapse in a heap.

Unrelated Salt Path fact: Jason Isaacs once saw me perform in a play and came backstage to offer me his congratulations on my performance. Career highlight!

It was Joe Orton's /What the Butler Saw/ for those who are interested. A fantastic farce, if shockingly dated in some aspects.

A picture of Gillian Anderson and Jason Isaacs hiking in The Salt Path

OK, so I lied a little this morning. The drugs ARE working and this is incredibly heartening, but the back pain remains terrible.

This is apparently because the rheumatoid arthritis has caused my spinal vertebrae permanently to fuse and this traps the nerves. Hope the physio can offer some help.

I plan to write something about my extreme disappointment of the sale of Amsterdam University Press and the entities it owns to T&F given my OA business model work for some of these presses. Turns my stomach.

"The plagiarism machine?"

"With our specific experiments, we find that the largest LLMs don't memorize most books -- either in whole or in part. However, we also find that Llama 3.1 70B memorizes some books, like Harry Potter and 1984, almost entirely."

https://arxiv.org/abs/2505.12546

Unsure that in my digital role at MSU I need "active violence incident" training, but there you go. Perhaps the greatest advantage of working from home in the UK is that we totally violate US 2nd Amendment rights in this house.

Today I feel HOPEFUL.

My new rheumatoid arthritis meds appear to be... WORKING. This is absolutely incredible! I have spent 3 years now in CONSTANT AGONY without a working drug. The new biological therapy is lifting the pain.

I have a spinal problem separate to this, but it's otherwise blissful.

"many people – particularly early on in their careers – treat peer review as an adverserial process"

However, this is a generally pretty useful post!

Managing home dialysis supplies is a mega complex business. You get one delivery per month and must not mess it up. You need every item, and every item comes in different quantities, so never in sync. You can't just order everything every time. My wife helps me with this and I'm so grateful.

A long and complex list of dialysis supplies

Good morning in the post!

A tici taci CD of Mr BC's new album. Mmm. James Peacocks new book in my book series! And a classic of feminist sociology by Carol Gilligan that I want to revisit.

A CD and 2 books

Sneak preview... I'm doing a big rewrite of our Knowledge Commons ID Management System. Currently designing the work flow for existing users to set their accounts to use new logins...

An email with lots of green and a snazzy highlight block for the verification link.

Friday night at 10pm when I noticed that one of the connectors on my dialysis machine was not wiring up properly was grim. This is, of course, outside service hours, so I've had to wait until this am to solve, though a kind tech spoke to me on the phone on Friday so I could limp through the weekend!

This morning's reading is Helen M Stringer's book on Rachel Speght, among the first female polemicists to write under her own name.

The cover of The Life of Rachel Speght: A Forward Woman

Yes - there's often a subliminal equation between close reading and slow, uninterrupted reading. However, reference materials and social discussion have always played crucial roles - merely enhanced or replaced by various new technologies. Close reading was often an interrupted activity.