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September 2023

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It's just SO predictable. Last week: new policy. This week: actually, lol, we didn't mean it. You can't trust a thing they say.

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I'm really sceptical of the "AI has no right to be trained on my books". I think a US court might rule this as "transformative" (and, therefore, fair) use. EU courts: who knows?

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Some legend is watching STAR TREK: VOYAGER on the dialysis ward. I can hear the theme tune!

It's the first episode, Caretaker. I recognise the script.

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I am personally glad that AI is ingesting my works as it means it's more likely to say things that echo my worldview. If we can get rid of everyone else's writing from it, that would be ideal.

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The thing about the "free speech absolutists" is that they never have an important political point to make. They just like upsetting people because they are playground bullies who never grew up. They hide behind enlightenment political principles to antagonise and that's it.

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Braverman. From an immigrant family. Perhaps she is right and *she* is the threat.

Narrator voice: she is not right and this view is disgusting

H/t to @ernestopriego for the pic

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It's two weeks, I believe, until I switch to home haemodialysis and SLED (sustained low-efficiency dialysis), which is where you do long, slow overnight sessions. It's much gentler on your body, more like what your kidneys do naturally, and generally has better outcomes. Hurrah!

Basically, the default hospital schedule of 3x per week for 3-4hrs is a massive compromise. It's trying to pack a week's worth of kidney function into 12hrs per week. SLED gives you more like 30% kidney function equivalent.

They've told me that, with SLED, I could have a decade or more of life expectancy, so it's a big deal. They've tempered that, though, by reminding me that infections still pose a huge threat to my life.

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Next time someone tells you "yeah, but daleks can't do stairs" take the opportunity to school them on how this is a societal choice/disablement rather than the fault of the dalek's impairment.

Critical dalek disability discourse.

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Mary Beard: ‘The last thing I’d want is a world in which we all agreed’

Isn't this kindof a rash statement? I mean, if we all agreed on kindness, generosity, and helping others, the world would be a much better place.

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Actually had a really nice weekend. Coffee outside as we went for covid + flu vaccines. Wrote 1.2k words of Star Trek: Voyager book. Did the seance tech (see previous post). Cuddled the new doggy. Could be worse!

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My weekend is building an electronic, voice-activated nineteenth-century-style séance simulator using a raspberry pi and some AI for an art/performance exhibit in Leeds. How's yours?

Power ON

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OK, so the results are in. If you have terrible hip pain when sitting and are waiting for a hip replacement, I recommend:

1. Try a kneeling chair. They can hurt your shins but do work.
2. Get a good cushion that suspends your coccyx.
3. Get a footstool - this worked best for me!

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Private Eye thinks this is funny, but it's actually a perennial problem with all hospital clinics. Even if you tell reception that you are deaf, they still just call your name.

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Citations and addressability

What is the point of a citation? As Anthony Grafton puts it in his history of the footnote, "the culturally contingent and eminently fallible footnote offers the only guarantee we have that statements about the past derive from identifiable sources. And that is the only ground we have to trust…

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Tomorrow's excitement? The dialysis machine, christened The Dalek, is being delivered to the house. I have to wait a bit before I can start doing it at home, but it will be such a relief not to spend 18 hours per week in hospital.

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My search history is a mixture of Star Trek, queries about legal matters pertaining to wheelchairs, and computer programming 😂

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It's all go tonight. I've cleared a SAD (Sensor Air Detector) and TMP (Trans-Membrane Pressure) alarm each on the machine. Feeling like I should get some dialysis competency medal.

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So many people's modern work is total bullshit.

Three people opposite me on the train to dialysis have been talking about seed funding small brands for 30 mins. I have no idea what industry they even work in.

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It's definitely happening! Little Robyn, the tri-pawd rescue, comes to us in the first week of October. She lost a leg in an accident but still has time for smiles.

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Got a geeky little hobbyist project underway at the weekend. Raspberry Pis really are extraordinary little hobby machines.

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Hospital have reopened possibility that my rheumatoid arthritis is actually ankylosing spondylitis.

This condition, v similar to RA, is much more common in men. I do not have the genetic marker that 90% of cases have, but apparently the 10% who don't have the more severe form.

The primary manifestation of this condition is back, neck, and shoulder inflammation and severe pain leading to fusion of the vertebrae.

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It's great that the government has backed the right to a second opinion in the NHS (Martha's Rule). Now, could we also have the right to a first opinion?

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Something we easily forget in the academy: the general public STILL thinks it's strange/unusual for academics to study works of popular culture.

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Why Lever Press?

My next book, tentatively titled Star Trek: Voyager: Critical and Historical Approaches to Ethics, Politics, and the End of the 1990s is now under contract at Lever Press (title definitely needs some work). This, for me, is very exciting. An open-access press with an innovative funding model -- so…

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Called into hospital today. Tiresome. They have at least let me do my dialysis early. Did the whole setup under the watchful examining eye of the ward sister, who said I scored 100%. Which means I should be able to do it at home soon!

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To put it mildly, and in technical terms, I am "fucking glad" I won't have to have Peter Hilton - who thinks the solution to sexually inappropriate behaviour is for victims to ignore it - as my anaesthesiologist.

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Last night we finished our third watch-through of the entirety of Star Trek: The Next Generation. Next up is First Contact and then Voyager for the fourth time! This now counts as research.

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Unless you were with them/an actual alibi for the time of the purported offence, it seems very rash to leap to the public defence of someone for sexual abuse allegations just because you like them or their work.

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Retract this!

Today's big news is that Crossref has acquired the Retraction Watch database of expressions of concerns and retractions and has made it openly accessible to anyone who wants to use it. I'm waiting for full confirmation of the license or public domain dedication under which it will be released, but…

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The problem for disability rights campaigners: if you are too unwell to speak up in public, you are never heard. If you speak up in public, you aren't deemed unwell enough to merit empathy.

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Hurrah! I've just signed a contract to write the open-access book Star Trek: Voyager: Critical and Historical Approaches to Ethics, Politics, and the End of the 1990s (title DEFINITELY subject to change) with Lever Press. Excited!

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Feeling better than I have done in about a year or more. Thanks tocilizumab and dialysis! Now reading & writing every day. I find that setting a target word count - relatively low, say, 600-800 words - is a good way to make progress. But I don't exceed it. Hit the target & stop.

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Private Eye reporting that the UK government didn't send a single representative to the UN Inquiry into its treatment of disabled people (which is a catastrophic set of human rights abuses - no exaggeration).

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I saw something the other day saying that universities shouldn't accept cash payments for rent or fees because it encourages money laundering. Err, hang on. Cash is legal tender. Either we use it and you can pay with it or we abolish it (which I don't think we should).

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Reinfusion is important in haemodialysis, because about a pint of blood - or 1/10th of your total blood volume - is in the machine at any time. You don't really want to lose that much although some machine alarms indicate that you just have to take the hit and abort.

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Also, at last, the doctors have prescribed me dermal pain patches. I think they're fentanyl. This is good because, at present, my pain meds are being dialysed out.

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Today we're having the first step in our home conversion done to allow haemodialysis. Step 1 is electrics. New distribution/RCD board, uninterruptable power supply, emergency light (so you can see to reinfuse external blood if there's an emergency in the night).

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I *think* I have worked out how to minimise the pain and nausea from haemodialysis.

1. Take anti sickness pills preemptively 30 mins into the session.

2. Take painkillers preemptively 1hr into the session.

We also discovered that the reason I was so sick the other week was due to an infection that the dialysis was aggravating. Because of tocilizumab this doesn't show up as a fever or blood changes.

3. Drink caffeine/tea _at the end of the session_ once dialysis has finished.

4. Drink more caffeine/tea mid-way through the session when the headache begins to build.

5. Do NOT take opiate painkillers after the 1hr mark. Seems to induce nausea.

Nope. Didn't work.

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Points mean prizes

This morning I gave the third of my keynote talks this week at the Janeway conference: The Lower Decks. It's been quite a week and I am exhausted with my kidney failure.

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A kind gesture that costs little is to tell someone who has had to reschedule something for reasons beyond their control - say medical appts - that the new time "works better for me anyway", regardless of its truth.

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Tonight, it's dialysis. Tomorrow AM, keynote #2, at @sheffielduni OpenFest. First got to shift this terrible dialysis hangover!

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The thing that distresses me re critical AI discourse is how quickly defenders flock to using "intellectual property" as a defence. If this leads to further backlashes against open knowledge dissemination, I'll be very disappointed.

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New wheels

Well, it finally happened, as Queen once sang. But I am not going "slightly mad" as the song professes. Instead, I have decided that the time has come where I need a wheelchair to get around. My arthritic hip damage is substantial and painful -- and it's stopping me going places. I rarely want to…

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Gave an interview earlier re shielding and told the interviewer about our box of "things to do when shielding is over". We haven't yet been able to open it.

@1goodtern

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There's a guy who looks like John Cleese on the dialysis ward. Bit awkward. I mentioned the war, but think I got away with it.

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Global pandemic. Government: children missing a single day of school is enough to scar them for life and to damage their social interactions forever.

Schools closed because of threat to life re. concrete crumbling. Government: ah well, we don't really want to spend on it.

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This morning I am reading @DrFrancesRyan's Crippled: Austerity and the Demonisation of Disabled People. Quite frankly, it is literally making me cry with rage. Even when you know how bad it is, seeing it written down and laid bare is the most challenging read in a long time.

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A friend sends a depressing leaflet. The library in Lewisham will be closed for 2 years so that it can become a... "business hub".

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Does anybody have any advice on good cushions for those waiting for a hip replacement, with constant aching? Asking for me.

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Coming soon... “Contains scenes of mild peril”: the state of digital preservation across seven million articles