JK Rowling new book — chronic illness references

Kitty said:
What in the name of all the saints is Spoonie culture supposed to be?
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I guess it is: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#4

Rowling clearly gets things completely wrong and her approach is inexcusable.
But I do recognise what I think she has encountered and extrapolated from.

S4ME is a safe place. I continue to be astonished at how it manages to be a friendly, constructive place to talk about ideas and feelings and end up feeling it was worth dipping in, even if on odd occasions one's pride gets a dent or two.

My previous experience with being a board member for another forum brought me into contact with other internet groups where if you did not chant the group mantra you had the very nastiest abuse hurled at you. I know exactly what Simon Wessely was complaining about - I just don't think he had any right to grumble. I got the same stuff, despite trying to be on the patients' side! The nasty stuff one sees on medical Reddit boards has its patient equivalent. One cannot be blind to that. We have encountered here one or two very strange individuals over the last decade who might some of the time appear as stalwart advocates but at other times showed a very different side. I won't say more.

But I suspect that Rowling's picture may be more directly fed by experiences with medical charities. We don't need to go very far to think of hints. We have been discussing cosy groupthink at places like MEA recently. The same used to apply to AfME. Fixed ideas have not been alien to Forward ME either. Maybe Rowling had a bad experience with the MS charity. Perpetual 'patient' chairpersons and the like have often seemed to have remarkably little evidence of having the illness concerned, or at least to have recovered so long ago that nobody could tell.

And these organisations form the main public profile of many chronic diseases. I am not saying in any way that Rowling is justified but I can see how someone might come to her position.

It makes me wonder what it is about S4ME that protects it from any of this. Nobody here uses the forum as an ego trip. Thank God.

It would be interesting to talk to Rowling and try to make her see sense. Maybe that 7M£ of sense we were talking about. Maybe Chris Ponting might meet her on the bus one day...
 
Trish said:
I doubt she did the casting. She doesn't do the TV scripts.
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Sure, but it seems like a basic criteria that most authors would require these days (given the political winds) - that disabled characters in the book portrayed by actually disabled actors.

Yann04 said:
As @obeat previously suggested. Since she’s a billionaire and negatively caricatured pwME, I’m sure she won’t mind funding a 7£ pound study on ME. That’s like, what? 0.1% of her wealth?
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People have been begging her for awareness or funding for years, and only met with silence. I think it is clear what she thinks of ME/CFS...
 
Kitty said:
I know, but it's not a culture, it's just an attempt to explain activity limiting conditions to people who struggle to understand them.
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It's the 'social contagion' idea again, I think. 'All these people can't really be disabled/neurodivergent/trans, they're just latching onto a trendy "identity" because they want attention/secondary gains/an excuse for their inadequacies...'
 
Jonathan Edwards said:
It makes me wonder what it is about S4ME that protects it from any of this.
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Maybe partly that it started as a learning community and has stayed that way? People are willing to call out bullshit, but they've developed ways to do it that aren't aggressive or personal. They don't claim status either.

There's an unspoken understanding that some people are better able to handle direct challenge than others, and that folk new to ME/CFS may arrive with theories that they think are explanations, but aren't.

One of the things that impresses me most is the way new members are led to understand that we really don't have any answers or treatments. It almost seems to be dashing people's hopes, yet they often stick around and pitch into discussions in a positive way.
 
Jonathan Edwards said:
I guess it is: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#4

Rowling clearly gets things completely wrong and her approach is inexcusable.
But I do recognise what I think she has encountered and extrapolated from.

S4ME is a safe place. I continue to be astonished at how it manages to be a friendly, constructive place to talk about ideas and feelings and end up feeling it was worth dipping in, even if on odd occasions one's pride gets a dent or two.

My previous experience with being a board member for another forum brought me into contact with other internet groups where if you did not chant the group mantra you had the very nastiest abuse hurled at you. I know exactly what Simon Wessely was complaining about - I just don't think he had any right to grumble. I got the same stuff, despite trying to be on the patients' side! The nasty stuff one sees on medical Reddit boards has its patient equivalent. One cannot be blind to that. We have encountered here one or two very strange individuals over the last decade who might some of the time appear as stalwart advocates but at other times showed a very different side. I won't say more.

But I suspect that Rowling's picture may be more directly fed by experiences with medical charities. We don't need to go very far to think of hints. We have been discussing cosy groupthink at places like MEA recently. The same used to apply to AfME. Fixed ideas have not been alien to Forward ME either. Maybe Rowling had a bad experience with the MS charity. Perpetual 'patient' chairpersons and the like have often seemed to have remarkably little evidence of having the illness concerned, or at least to have recovered so long ago that nobody could tell.

And these organisations form the main public profile of many chronic diseases. I am not saying in any way that Rowling is justified but I can see how someone might come to her position.

It makes me wonder what it is about S4ME that protects it from any of this. Nobody here uses the forum as an ego trip. Thank God.

It would be interesting to talk to Rowling and try to make her see sense. Maybe that 7M£ of sense we were talking about. Maybe Chris Ponting might meet her on the bus one day...
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We have had such bad experiences in earlier times on the forum, much of it hurled at mods in private. We have worked hard to keep the forum ethos friendly and constructive, to create a safe space.
 
JKR has alienated a large % of her fan base in the past few years . Key actors from Harry Potter have felt the need to state that they do not share her opinions.

My daughter was a huge Harry Potter fan and virtually consumed all the books in primary school . She would not touch anything produced by JKR now.
 
I still use the Harry Potter books to help me fall asleep sometimes. I decided to detach them in my mind from the author. I have read a couple of her books for adults and was surprised at how badly written they are. I got the feeling that the attempt to transfer from children's fantasy to adult fiction had shown up weaknesses and nobody dared edit such a famous writer. I rarely like fiction where it's obviously written as a vehicle to convey the author's opinions and prejudices.
 
I watched the Strike television series last night. The acting is quite entertaining but the script a bit pedestrian and the stuff about the net and anomie pretty obscure.

My impression is that Rowling wants to mix a popular crime story with some mind worm she has about people trusting each other and the way the net has made it easy to avoid even deciding who to trust - just moving on. It all seems a bit self-absorbed. If I get fed up with the net I go birdwatching. Quite often I meet up with some birding chums I trust and we have a good natter. Maybe I should go back to watching David Attenborough but he tends to lay the moral dilemmas on a bit thick too these days.
 
This is a long read, published in 2022. I've just clipped some quotes:

Medium
Alicia Hendley

Sept 22, 2022

https://aliciahendley.medium.com/jk...e-problem-of-misplaced-authority-5cf6a2ab5210

First, what I didn’t find. I didn’t find significant content or themes of transphobia in the novel. Saying this is not granting Rowling absolution for her inflammatory gender critical views, nor does it mean that the GC crowd should pop the corks off their champagne bottles just yet. Because, what I did find (and not one or two examples, but an entire theme) is equally troubling. Threaded throughout the novel, by this highly well-known and influential author, is the dismissal and lazy stereotyping of yet another vulnerable group of people: those who suffer from what are often referred to as “invisible illnesses”.
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The term invisible illness means exactly that: an illness, disease, or condition which is not immediately seen by others, but is as debilitating as those that are easily recognized. The term encompasses many types of chronic conditions, disabilities, or diseases that significantly impact a person’s functioning, but often are difficult to diagnose with a simple test or two.

Despite frequently appearing “healthy”, sufferers often experience serious, chronic symptoms that may impair their ability to consistently complete even routine daily activities. Symptoms are often “multi-system”, and cause significant impairment.

Examples include chronic pain, extreme fatigue, often not improved by rest, sleep difficulties, digestive problems, memory issues, heat intolerance, faintness, a sudden drop in blood pressure, or weakness. Invisible illnesses include autoimmune diseases (e.g., Crohn’s disease, lupus), Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), irritable bowel syndrome (IBS), fibromyalgia, and myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), to name a few. Neurodivergent conditions (e.g., autism), and mental health conditions (e.g., clinical depression or anxiety) also fall under the umbrella of an invisible illness.

Many invisible illnesses are by and large not a part of the general public’s lexicon, and are thus often misunderstood.
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In the years since working as a psychologist, I’ve seen some positive movement within the health care community in terms of both understanding and acknowledging that often complex invisible illnesses such as ME/CFS are valid medical conditions (ME/CFS was previously dismissed as “the Yuppie flu” by health professionals). For far too many who are suffering, however, such movement remains much too slow, with the path towards even obtaining a diagnosis far too long. As a result, any real increase in public awareness or acceptance of illnesses that aren’t obvious to the naked eye, remains at a standstill.
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I know this intimately, having witnessed my daughter go through her teen years experiencing recurring, debilitating pain and extreme digestive problems, which led to numerous, often invasive (and humiliating) procedures, only to have her symptoms trivialized or dismissed (“You should take more walks”; “Baths help!”, “Avoid baths!”, “It’s your anxiety talking–try more therapy!”, “Just think positive thoughts!”, “Practice lazy-8 breathing!”). It was only in the last year that she was diagnosed with fibromyalgia, and, following a week-long hospitalization, also with ulcerative colitis. While yes, therapy definitely helped her to cope with clinical anxiety issues, it did little to reduce the pain that would cause her to double over on the floor, crying out for help.

It is for her, and for others like her, that I am writing this.
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Unfortunately, the term “spoonie” has been used against sufferers to mock or trivialize their experiences, somehow suggesting that if someone identifies as such, they must be defining themselves purely by their illness, with the added implication being that said illness might not even be real. Keeping this in mind, the idea that any author with widespread influence would promote such stereotypes is unconscionable. What writer with power would propagate the belief that a vulnerable group’s experiences are invalid, worthy of mockery and derision?
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Throughout The Ink Black Heart Rowling contrasts people who have valid, visible, “real” illness/disabilities, with those who do not. Between these two groups lies a chasm, the distance between them too large to ignore. Members of one group are described as strong, the other weak. One group is stoic, the other emotional and dramatic. One group desires to “get on with it”, to live their lives “despite” their difficulties, to even excel, while the other not only wallows, but defines themselves by (and perhaps even revels in) being ill, the term “spoonie” tossed around like a football. Can you guess which group is which?
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One of the two protagonists of The Ink Black Heart is Strike, a man with a visible (“real”) disability. He is a private detective trying to find a murderer in this not bad/not great crime thriller. When we first meet Strike, he is described as a man who isn’t conventionally handsome (this is emphasized repeatedly), but still attracts rich, unbelievably beautiful women who are lucky enough to meet him. He is also an amputee who experiences pain and discomfort on a daily basis, having had lost much of his leg during a bomb attack as a soldier. And soldier is the key word. Strike’s disability, while often causing him significant, quite realistic suffering, does not stop him from solving great mysteries. No. Strike soldiers on.
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He goes beyond the call of duty, despite the physical harm he may be causing himself by overusing his damaged leg, bewitching a slew of gorgeous women along the way. Because? That’s what people do who have legitimate, visible disabilities. Do they wallow in their suffering, or demand the compassion of others? No, sir. They don’t define life by their challenges. Instead, they grab it by the balls, often annoyed if anyone deigns to mention their potential limitations. Spoonie-schmoonie!
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A lesser, but still significant character in the book is Vikas. He is described as a young genius, a former child prodigy who entered Cambridge University at the age of 16, obtained his PhD in astrophysics at the age of 23, and who (obviously!) won an international research award before his prefrontal lobes were even fully developed.
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Did I mention that he has cerebral palsy, is confined to a motorized wheelchair, has limited function in his hands, and has to use other forms of communication, other than speaking verbally, to convey his thoughts? Oh, gentle reader. Why should I? After all, he is only doing what anyone with a real, visible disability or illness does. They get on with it. They are resilient, and don’t get stuck in the muck. They refuse to define themselves by their challenges, or let any limitation get in their way. Because? Wallowing is only something people who desperately want to use their illness or disability to gain attention and sympathy do.
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Of course in the real world those with significant visible disabilities can be (and are) as bright, creative, and capable of achieving great things, as those who are not ill/disabled. Rowling describing disabled characters so positively could have been a very good thing, an enlightening thing, had their accomplishments not been venerated at the expense of those with medical conditions that are complex and not so visible. Unfortunately, Rowling instead hammers us over the head with the stereotype of invisible illness sufferers (#spoonies) as indulgent, self-pitying catastrophizers, people who can never stop complaining, and who can never be quite satisfied, like Princess and the Pea.
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Kea is continually described as a young woman who does not “get on with it”. No. In sharp contrast to our swarthy hero, or to the child genius who made his parents proud, Kea drops out of university, runs back to her mother, and hides out in her childhood home. Kea is painted as a 25-yr-old who refuses to grow up, instead seeking validation and attention for her supposed ailments through social media, as well as online communities of fellow attention-seekers. Chronic fatigue syndrome? Fibromyalgia? Some odd condition that involves fainting? Oh, poor, silly Kea. Clearly you are faking, or, at best, exaggerating your circumspect problems, as sprinting out of your home at one point to avoid having to speak to Strike (despite supposedly being bedbound) clearly proves. When it comes to Kea, it’s all about me, me, me!

Thus, by repeatedly implying that visible illnesses or disabilities are the ones that are legitimate, and are associated with resilience, stoicism, and “getting on with it”, while those that are invisible are possibly fake, and are inevitably related to the weak personality of the supposed sufferer, societal stereotypes and prejudice are only bolstered.
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Keeping this in mind, it’s disturbing that the only characters an author of incredible influence creates who have these misunderstood illnesses are individuals who are highly unpleasant, dramatic, histrionic, and likely duplicitous. To the average reader, Kea (or Inigo) may either be their first introduction to people with invisible illnesses, or may serve to reinforce stereotypes they already hold towards family members, coworkers, or acquaintances.

What an injustice Rowling is doing to these individuals, by giving their parents, friends, or family “evidence” that they were right all along, that the extreme exhaustion, recurring pain, or sudden faintness their teen or young adult is experiencing is truly is “all in their head”. And forget calling oneself a “spoonie”, or trying to connect with people online who truly “get it”. Such online communities are clearly toxic to “suggestible” young people, as Kea’s character shows. After all, Rowling said it, so it must be so.
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Again, with great influence comes misplaced authority. And, whether it’s tweeting about trans women being a potential threat to cis women, or creating fictional characters with uncommon illnesses who are self-pitying, attention-seeking stereotypes, the damage is the same.

While I shouldn’t have been surprised by what I found in The Ink Black Heart, I still was. Do better, Rowling. As yes, I read the damn book.
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Trish said:
I still use the Harry Potter books to help me fall asleep sometimes. I decided to detach them in my mind from the author. I have read a couple of her books for adults and was surprised at how badly written they are. I got the feeling that the attempt to transfer from children's fantasy to adult fiction had shown up weaknesses and nobody dared edit such a famous writer. I rarely like fiction where it's obviously written as a vehicle to convey the author's opinions and prejudices.
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I read the Harry Potter books when they first came out as all my godchildren were obsessed with them. My German goddaughter at ten queued for hours to get the English new editions because she could not bear to wait for the German translations. I was disappointed then at how poorly they were written, though you can not doubt her children’s books were brilliant story telling. Though the writing did improve over successive books they are the only books I have read where I preferred the films. I have not read any of her adult fiction.

I decided not to watch last night’s TV dramatisation as I suspected I would just get annoyed. I never understood why she was so insistent on expressing her views on trans issues in a way that seemed designed to trigger controversy. Presumably she feels obliged in some way to strongly put over her views on specific issues but why has she chosen trans issues and now invisible illnesses to be so publicly myopic about?
 
I watched episode 1 last night, and apart from a reference to lupus, nothing was said in the initial episode about ME. I'll be watching episodes 2 and 3 today.

Trish said:
I got the feeling that the attempt to transfer from children's fantasy to adult fiction had shown up weaknesses and nobody dared edit such a famous writer. I rarely like fiction where it's obviously written as a vehicle to convey the author's opinions and prejudices.
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Given that JKR is married to a doctor; that her late mother died in her mid 40s from MS; that JKR has been a patron to the MS Society Scotland and donated £25.3 million for MS research it seems particularly nasty.
 
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Dx Revision Watch said:
I watched episode 1 last night, and apart from a reference to lupus, nothing was said in the initial episode about ME. I'll be watching episodes 2 and 3 today.




Given that JKR is married to a doctor; that her late mother died in her mid 40s from MS; that JKR has been a patron to the MS Society Scotland and donated £25.3 million for MS research it seems particularly nasty.
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Sad to think that for many women pre scan availability MS was an invisible illness
 
JohnTheJack said:
it doesn't necessarily mean they played much of a role in the actual production
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I understand, I worked in a related field. What I was trying to say is that they could have a role.

Any writer who thinks cripping up is unacceptable in the portrayal of their work could say so. Anyone with a platform could help amplify the voices of disabled creatives, whose audience is limited because they're shut out of many high profile jobs.

Not to do so is a choice.

I'm embarrassed about how much my industry historically got wrong on disability representation and access, but at least it understood this. It had got that far by the 1970s.
 
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Reposting from further back in the thread

JKR was the majority shareholder in the TV production company Brontë Film and TV (which she created along with her literary agent) which produces the Strike series. The company is 'Brontë Film and TV'. Her literary agent Neil Blair is still the director of the TV production company.



The Independent March 2023

'JK Rowling production company reports 74 per cent drop in profit'

'The company was established in 2012, and focuses largely on adaptations of Rowling’s work.'

'Rowling founded Brontë with her literary agent Neil Blair. She is the majority shareholder.'
(til 2023)

https://www.independent.co.uk/arts-...owling-bronte-film-tv-net-worth-b2311861.html



Though JKR seems to no longer be an officer/Director of the TV production company Brontë Film and TV.

Now there is still the director, Neil Lyndon Marc Blair, JKR's Literary Agent who is also the single Director of the company 'Ink Black Heart'.


Companies House info:
BRONTE FILM AND TELEVISION LIMITED
https://find-and-update.company-information.service.gov.uk/company/08309584/officers


THE INK BLACK HEART LIMITED
https://find-and-update.company-information.service.gov.uk/company/14398101/officers

.
 
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My main impression watching the clips is that this is as badly written as it's poorly researched. And about as realistic a portrayal of ME/CFS as Reefer madness was of cannabis. So I really don't know why this was even produced. It just looks like someone badly wrote this in a fit entirely to punch down. Some lines are just so random and weird, thrown there just to raise the old anger-o-meter.

But anyway Rowling has spent most of her last decade being a billionaire who spends most of her waking time raging against discriminated people and things that don't affect her life one bit.
 
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