JK Rowling new book — chronic illness references

Sarah94 said:
Yeah some of the dislikeable characters were pro-trans rights.
The character who wrote a blog criticising media for ableism and racism and transphobia… turned out to be a paedophile. Subtle.
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Even Reddit, of all places, has banned the "groomer slur". It's the age-old trope that LGBT+ people want to groom vulnerable people (typically children and women) because we're all sexual deviants trying to corrupt the nation/recruit more people/have our wicked way with your sons and daughters.

Some people are less self-aware than they realise, and so repeat such tropes without even realising it. Lack of curiosity is probably an aggravating factor.

This book seems to prove that lack of self-awareness and curiosity is often a root cause for various unconscious biases among people who *think* they're open-minded but aren't.
BTW, worth noting that the framing of “trans rights activists” is used by anti-trans people to essentially mean “any trans person who believes they should have rights”. Rather like the framing of ME patients as “militant activists”.
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This.
TiredSam said:
So what's the correct terminology for those who support trans rights?
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It's the framing more than the words used, I think. The words are rather innocuous on their own, but come with baggage in the same way calling us "ME activists" and "ME militants" has connotations. Why aren't we just pwME?

(It's also supposed to echo "men's rights activists" (MRAs), which is why it's often shortened to "TRAs" on Twitter.)

I did begin writing a media briefing document for #MEAction UK before joining the NICE GDC, so this area is something I've thought a bit about. At least, as it pertains to us.

Media coverage of pwME often positions anyone asking for fairness as an "activist", which has the effect of making us seem radical or extreme.

"Campaigner" is a tad more neutral, and "advocate" seems better still. But I would argue that the best approach is to avoid that framing altogether.

The reality is, the majority of pwME are asking for the same stuff -- it's not actually just a nebulous group of "activists". Portraying it that way makes those who speak out seem like they're on the fringes, rather than representative of the whole. It also makes the message more impersonal.

So the ideal solution would be referring to us as a community/group of people first, and then adding clarity about who else is included, if we're talking about more than just the community directly affected.

So, we'd have "people with ME" instead of "ME activists", and if we needed to broaden it, add "and their carers/allies". If talking about specialist clinicians, we'd say "ME specialists" and we could add qualifiers (some, most, 25% of, etc) to be more specific.

Which brings me onto the BBC stuff. When I did my script editor placement with Sky Studios, I got a bit a bit an insight into the process. The BBC is likely even better than Sky, given its resources and statutory obligations.

The studios all have compliance teams who have to check the legality, safety and inclusion/diversity onscreen. They are relatively thorough, and do seek sensitivity experts when needed.

They do have a lot to look at, though, and it's often the case that there's a small pool of "experts" they'd draw upon -- and I imagine there aren't many pwME able to do this work.

TV is generally much better than publishing because it is more closely scrutinised and the penalties tend to be more serious. There are frameworks and statutory duties that they have to consider, and they do get hit with fines when they get things wrong.

Publishing is better than the press, usually, but that's entirely due to voluntary effort rather than any real oversight. It's very rare for publishers to get in trouble for what they put out into the world, and when they do, it's usually only about libel.

Without the same systems of oversight and accountability that TV or the press has, it only takes one well meaning but poorly informed/naive person for mistakes to slip in.

As for the book itself, and knowing the editorial process from inside, my guess is that JKR either turned in a 2,000-page brick and this *is* the edited version, and/or she argued against every edit, so the editor had far less power than they'd have liked.

There's a point, when dealing with certain types of authors, at which even the steeliest editor can either give in or say, "We have to make these changes or we can't publish your book." It's the final card we can play, and an extreme one, but we have to use it more regularly than you'd expect. And that option isn't available at all when you're publishing JKR, so you're left with just giving in.

Brontë Films will probably have researchers whose job it is to just spend all day deep-diving into a given issue, which often involves contacting charities for advice when dealing with disabilities, so there is scope for our charities to get involved there.

Given they're partnering with the BBC, I suspect that, as a minimum, they will cut most of the obviously stereotypical stuff out, will try to find disabled actors for disabled roles, and may even try to find a disabled writer or editor to give it a glance over.
 
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adambeyoncelowe said:
Even Reddit, of all places, has banned the "groomer slur". It's the age-old trope that LGBT+ people want to groom vulnerable people (typically children and women) because we're all sexual deviants trying to corrupt the nation/recruit more people/have our wicked way with your sons and daughters.

Some people are less self-aware than they realise, and so repeat such tropes without even realising it. Lack of curiosity is probably an aggravating factor.

This book seems to prove that lack of self-awareness and curiosity is often a root cause for various unconscious biases among people who *think* they're open-minded but aren't.

This.

It's the framing more than the words used, I think. The words are rather innocuous on their own, but come with baggage in the same way calling us "ME activists" and "ME militants" has connotations. Why aren't we just pwME?

(It's also supposed to echo "men's rights activists" (MRAs), which is why it's often shortened to "TRAs" on Twitter.)

I did begin writing a media briefing document for #MEAction UK before joining the NICE GDC, so this area is something I've thought a bit about. At least, as it pertains to us.

Media coverage of pwME often positions anyone asking for fairness as an "activist", which has the effect of making us seem radical or extreme.

"Campaigner" is a tad more neutral, and "advocate" seems better still. But I would argue that the best approach is to avoid that framing altogether.

The reality is, the majority of pwME are asking for the same stuff -- it's not actually just a nebulous group of "activists". Portraying it that way makes those who speak out seem like they're on the fringes, rather than representative of the whole. It also makes the message more impersonal.

So the ideal solution would be referring to us as a community/group of people first, and then adding clarity about who else is included, if we're talking about more than just the community directly affected.

So, we'd have "people with ME" instead of "ME activists", and if we needed to broaden it, add "and their carers/allies". If talking about specialist clinicians, we'd say "ME specialists" and we could add qualifiers (some, most, 25% of, etc) to be more specific.

Which brings me onto the BBC stuff. When I did my script editor placement with Sky Studios, I got a bit a bit an insight into the process. The BBC is likely even better than Sky, given its resources and statutory obligations.

The studios all have compliance teams who have to check the legality, safety and inclusion/diversity onscreen. They are relatively thorough, and do seek sensitivity experts when needed.

They do have a lot to look at, though, and it's often the case that there's a small pool of "experts" they'd draw upon -- and I imagine there aren't many pwME able to do this work.

TV is generally much better than publishing because it is more closely scrutinised and the penalties tend to be more serious. There are frameworks and statutory duties that they have to consider, and they do get hit with fines when they get things wrong.

Publishing is better than the press, usually, but that's entirely due to voluntary effort rather than any real oversight. It's very rare for publishers to get in trouble for what they put out into the world, and when they do, it's usually only about libel.

Without the same systems of oversight and accountability that TV or the press has, it only takes one well meaning but poorly informed/naive person for mistakes to slip in.

As for the book itself, and knowing the editorial process from inside, my guess is that JKR either turned in a 2,000-page brick and this *is* the edited version, and/or she argued against every edit, so the editor had far less power than they'd have liked.

There's a point, when dealing with certain types of authors, at which even the steeliest editor can either give in or say, "We have to make these changes or we can't publish your book." It's the final card we can play, and an extreme one, but we have to use it more regularly than you'd expect. And that option isn't available at all when you're publishing JKR, so you're left with just giving in.

Brontë Films will probably have researchers whose job it is to just spend all day deep-diving into a given issue, which often involves contacting charities for advice when dealing with disabilities, so there is scope for our charities to get involved there.

Given they're partnering with the BBC, I suspect that, as a minimum, they will cut most of the obviously stereotypical stuff out, will try to find disabled actors for disabled roles, and may even try to find a disabled writer or editor to give it a glance over.
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Amazing insight - thanks for this!
 
The character Inigo has ME. He is a thoroughly dislikeable character who bullies his wife and teenage children. An overbearing domestic tyrant. Readers are not supposed to like Inigo, or have any sympathy for/with him. In novel writing terms Inigo is not 'a sympathetic character'

Strike is the book's hero. He is a disabled war hero and the private detective investigating the murder of Edie. JKR repeatedly unfavorably compares the words and behaviors of the two characters with ME (one has POTS and Fibro too) with Strike's uncomplaining stoicism about living with his disability. Strike gets on with his life and works at his own detective agency. The two characters with ME do not work, and they talk about their disease and disabilities, unlike Strike.


Here Inigo talks about some of the painful and devastating losses ME sufferers experience. Remember, readers are not supposed to feel sympathy for Inigo, as illustrated by Strikes responses in his internal reflections.




'The Ink Black Heart' Page 759

“I happen to know exactly how it feels to be cut off in one's prime” Inigo continued, “to know that one could have excelled, only to see others succeed while one's own word shrinks around one and all one's hopes for the future are dashed. I was pushed out of my bloody job when this bastard illness hit me.

I had my music, but the band, my so-called friends, made it clear they weren't prepared to accommodate my physical limitations, in spite of the fact that I was the best bloody musician of the lot of them. I could have done what Gus has done, gone the scholarship route, Oh yes. And I had lots of artistic talent too, but this bloody illness means I've been unable to pursue it in any meaningful ...”


...But if Inigo was expecting sympathy from Strike he was disappointed. He who'd once lay on a dusty road in Afghanistan, his own leg blasted off, with the severed torso of a man who'd previously been bantering about a drunken stag night in Newcastle lying beside him, had no pity to spare for Inigo Upcott's crushed dreams.

If [Inigo] Upcott's work colleagues and bandmates hadn't been inclined to generosity, Strike was ready to bet it had been due to the bullying, self-aggrandising nature of the man sitting opposite him, rather than any lack of compassion.


The older Strike got, the more he'd come to believe that in a prosperous country, in peacetime – notwithstanding those heavy blows of fate to which nobody was immune, and those strokes of unearned luck of which Inigo, the inheritor of wealth, had clearly benefited – character was the most powerful determinant of life's course.'
 
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It's all there in that last line. Clearly our problem is we lack character. :banghead:
OK I know this is Cormoran Strike's thoughts, but JKR has set him up to be the hero in these books, so what he is portrayed as thinking is surely a reflection of what JKR thinks.
I haven't and don't intend to read the book, and I know I'm reacting to something taken out of context, but...
 
Trish said:
It's all there in that last line. Clearly our problem is we lack character. :banghead:
OK I know this is Cormoran Strike's thoughts, but JKR has set him up to be the hero in these books, so what he is portrayed as thinking is surely a reflection of what JKR thinks.
I haven't and don't intend to read the book, and I know I'm reacting to something taken out of context, but...
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Or as Dumbledore says to Harry when Trelawney’s prophecy is revealed, leaving the boy feeling like a passive victim of fate: “it is our choices that make us what we are”.

Clearly the author’s view - and downplaying the defining role of chance is in her interest, given that mixing a bit of Lord Of The Rings with a wodge of Enid Blyton had accidentally granted her a lottery-winning fortune.
 
Shadrach Loom said:
Or as Dumbledore says to Harry when Trelawney’s prophecy is revealed, leaving the boy feeling like a passive victim of fate: “it is our choices that make us what we are”.

Clearly the author’s view - and downplaying the defining role of chance is in her interest, given that mixing a bit of Lord Of The Rings with a wodge of Enid Blyton had accidentally granted her a lottery-winning fortune.
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To be fair I think she had plagarised read a lot of E. Nesbitt, R. Kipling, CS Lewis and TH White, though sadly she seems to have missed out Richmal Crompton from the canon of early 20thC writing for young people - otherwise she might have picked up the art of not being so utterly po faced.
 
Lou B Lou said:
The character Inigo has ME. He is a thoroughly dislikeable character who bullies his wife and teenage children. An overbearing domestic tyrant. Readers are not supposed to like Inigo, or have any sympathy for/with him. In novel writing terms Inigo is not 'a sympathetic character'

Strike is the book's hero. He is a disabled war hero and the private detective investigating the murder of Edie. JKR repeatedly unfavorably compares the words and behaviors of the two characters with ME (one has POTS and Fibro too) with Strike's uncomplaining stoicism about living with his disability. Strike gets on with his life and works at his own detective agency. The two characters with ME do not work, and they talk about their disease and disabilities, unlike Strike.


Here Inigo talks about some of the painful and devastating losses ME sufferers experience. Remember, readers are not supposed to feel sympathy for Inigo, as illustrated by Strikes responses in his internal reflections.




'The Ink Black Heart' Page 759

“I happen to know exactly how it feels to be cut off in one's prime” Inigo continued, “to know that one could have excelled, only to see others succeed while one's own word shrinks around one and all one's hopes for the future are dashed. I was pushed out of my bloody job when this bastard illness hit me.

I had my music, but the band, my so-called friends, made it clear they weren't prepared to accommodate my physical limitations, in spite of the fact that I was the best bloody musician of the lot of them. I could have done what Gus has done, gone the scholarship route, Oh yes. And I had lots of artistic talent too, but this bloody illness means I've been unable to pursue it in any meaningful ...”


...But if Inigo was expecting sympathy from Strike he was disappointed. He who'd once lay on a dusty road in Afghanistan, his own leg blasted off, with the severed torso of a man who'd previously been bantering about a drunken stag night in Newcastle lying beside him, had no pity to spare for Inigo Upcott's crushed dreams.

If [Inigo] Upcott's work colleagues and bandmates hadn't been inclined to generosity, Strike was ready to bet it had been due to the bullying, self-aggrandising nature of the man sitting opposite him, rather than any lack of compassion.


The older Strike got, the more he'd come to believe that in a prosperous country, in peacetime – notwithstanding those heavy blows of fate to which nobody was immune, and those strokes of unearned luck of which Inigo, the inheritor of wealth, had clearly benefited – character was the most powerful determinant of life's course.'
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That's unbelievably divisive and stupid on the logic front. I can see why she is loving her character, it provides her a wonderful excuse to write something inferring someone with a prosthetic might think that way and look down on someone with a debilitating condition, which doesn't reflect well on others with prosthetics either. Inferring we all sneer at each other as she might. But it isn't true.

Neither feels appropriate. Guessing she didn't talk to anyone in the same disability situation as Strike either. Smacks of an ablist/disability-hate putting words in the mouth of someone disabled - which is basically what BPS is isn't it. Teach the disabled to perform for acceptance and be self-deprecating and put up with/understand the bigotry they receive is deserved, lest those not disabled have to waste their energy being acknowledging, moral or appropriate.

I've mostly found that it's those without disabilities but who think their life is busy and hard or whatever and find you having one that is actually worse confronting of that belief they have the ones who play the 'no sympathy card' with some contrived BS, often either because they haven't got what they want (and are the type who are takers and have little use once people say no/always consider themselves to be 'put first') or/and aren't coping for whatever reason (experiencing a stressful situation for the first time and not having the skills to realise both can be true where you can acknowledge someone else can also be hurt and it not mean you don't, zero-sum stuff) or just are susceptible to being like that.

Not other disabled people. Or basically just decent, can and will do their own work and give-and-take people - whether healthy, disabled or whatever to be more accurate. Who can see bigotry rather than kidding themselves those being bigoted 'should understand their issues are rooted in something' (then using ideology and nonsense to claim that) and getting frustrated and angry with those they are doing it to who won't be persuaded of that.

Now this final page has been pointed out it feels even further from broadcastable even with amends - on the % of characters rule it feels like all of the characters with disabilities in this book are saying things or described in questionable ways, so hardly 'normal distribution' or 'context-driven' to the story, rather than anchored to disabled/not disabled being the differentiator.

This is just sticking a very poor fallacy onto the disabled world as if they are as petty and poor of thinking straight/well as she is. They aren't, because they've had experience that puts them above her in general and certainly in wisdom and seeing how the world works, which she might want to respect. And having a poorly mum/relative isn't the same situation - it is real , but different to being disabled and the exact situations themselves very varied and complex picture as to what is taken from it and was experienced/exposed to. It can be quite a different angle before you even add in people's different psychologies. Maybe she has missed spotting that difference between 'horse's mouth' and 'not the horse' when speaking for people.

All OK with being stupid can persuade themselves of something they want to, with 2+2=5, but it's their weak need to try and invoke the populus fallacy ['everyone agrees' or more appropriate 'everyone please agree'] or paste their comments onto someone else to infer they are more convincing than they are [source of origin argument], that I find most insightful and fascinating. Like it can be reality if you can persuade someone to say it back to you and you can evade or share responsibility. There's a lot of this in the twitter replies of "my royalty check..."
 
He who'd once lay on a dusty road in Afghanistan, his own leg blasted off, with the severed torso of a man who'd previously been bantering about a drunken stag night in Newcastle lying beside him, had no pity to spare for Inigo Upcott's crushed dreams.
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Hardly the most important point here, but god that is some poor sentence construction.
 
I've always known that Rowling's husband was a doctor but only thought to see if that was relevant to us when I was woken up by last night's storm

According to the GMC he's "registered without a licence to practice"

https://www.gmc-uk.org/registrants/4107884

There's a practice leaflet -

https://assets.practice365.co.uk/wp...s/157/2020/10/ORMISTON_booklet_1.pdf_2012.pdf

showing him as a GP. He seems to have a tendency to woo

Special interests: Pain Management (including Acupuncture), Dermatology (Skin Problems), Homeopathy and Drug Misuse Management.

I don't know if this tells us much. He could just have a vague impression of ME as psychological as many doctors do or, who knows, be best pals with Jon Stone and Alan Carson.

He wasn't a GP until 2006 so could have spent time in a relevant speciality. The search also showed him as director of a lot of companies, but that could normal for people in their wealth bracket.
 
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