JK Rowling new book — chronic illness references

I have been trying to find a way to express the difference I see between minorities of the sort @Jonathan Edwards listed - deaf person, cancer survivor, elderly etc. And the difference between those minority characteristics and pwME, trans people and some other groups.

I think the difference is that there are loud voices in current society who pronounce pwME, trans people and some other minorities as inherently bad people.

It sounds fine to say we shouldn't ask for special treatment, but that implies we are already treated as normal human beings, not as some kind of monsters.
 
I suspect the characterisation was always there in the public perception. I see Wessely largely as an opportunist who took advantage of a public prejudice.

I am not suggesting that Rowling's targeting of identity issues is the main problem. I am just suggesting that it may have a specific origin in experience of charity work and that may be a lesson.
 
Trish said:
I think the difference is that there are loud voices in current society who pronounce pwME, trans people and some other minorities as inherently bad people.
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There is some of that, but is there also a sense of some of their difficulties being...self-inflicted? A choice?

I overheard a conversation in a queue a few years back, when a woman was saying they didn't see why trans people had to make such a fuss over it. The snatches of conversation suggested they viewed it as an identity some people adopt as an attention-seeking behaviour. Seeing @Trish's post reminded me of it, and that people with ME/CFS have also been accused of attention seeking.

It's a particularly nasty way to drive more wedges in: acceptable/not acceptable identity, deserving/not deserving disability.
 
Her curious reference to "spoonie culture" makes me think her views on this have their origin in exposure to some rather toxic social media & other online groups, rather than deriving from any sort of charity work (those who have spent a little time browsing both Tumblr and Reddit will know exactly what I mean). I suspect she views "spoonie culture" as a form of social contagion.

It would be reasonable to engage with the BBC about their depictions of those with different illnesses & disabilities and how this may lead to greater stigma in the minds of members of the public; we already deal with far too much of that, and do not need BBC dramatisations making things any worse for us. I do not think any value will come of trying to engage her directly; it may well be counterproductive to pique her interest in this any further.

Also, far too much public & media attention is paid to the opinions of billionaires qua billionaires. She is the author of some apparently captivating children's stories & popular fiction; that does not make her an authority on any other subject.
 
Trish said:
I think the difference is that there are loud voices in current society who pronounce pwME, trans people and some other minorities as inherently bad people.
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There are lots of reasons for being considered a bad person, Trish, like being a socialist, which I am. Like making money for big Pharma, which I have. And be assured, Deaf People are treated as stupid, unco-operative, deliberately lazy about social interaction and making unreasonable demands on others - even by wives at times.

There is a difference of degree, certainly.
And the medical profession have completely failed to support the ME/CFS community.
 
Trish said:
I don't think the problem is advocacy gone wrong for ME/CFS. At least I don't think that's the major problem. think the characterisation of pwME as lying scroungers AND as inherently bad people is rooted deep in the BPS view, coloured by the false accusations about us being dangerous activists and decades of BPS media coverage saying we could get better if we tried.
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Hence the comment about Edinburgh neurology .
Casual chat informs perceptions insidiously
 
I watched the series there was only one mention of someone having ME that I registered- the grumpy father who was a wheelchair user and was killed eventually by the son. The person he was grumpy with was his wife who referred to him having naps and he pointed out he has ME. The wife was dippy.
I’ve not read the book but on the basis of the TV adaptation I didn’t take anything as particularly concerning. The focus was the to me bewildering online world and also on Strike being in a lot of pain and self medicating with painkillers and booze and the unrequited feelings between the 2 main characters. I don’t think the majority of viewers would have taken away much if anything about ME other than perhaps the guy was a wheelchair user.
 
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NelliePledge said:
I watched the series there was only one mention of someone having ME the grumpy father who was a wheelchair user and was killed eventually by the son. The person he was grumpy with was his wife who referred to him having naps and he pointed out he has ME. The wife was dippy.
I’ve not read the book but on the basis of the TV adaptation I didn’t take anything as particularly concerning. The focus was the to me bewildering online world and also on Strike being in a lot of pain and self medicating with painkillers and booze and the unrequited feelings between the 2 main characters. I don’t think the majority of viewers would have taken away much if anything about ME other than perhaps the guy was a wheelchair user.
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Really ????

You think that Inigo and Kea are typical ME sufferers? Or even outlier ME sufferers? In 30 years I have never encountered ME sufferers anything like Inigo or Kea.

The aggressive Inigo shouting at and bullying his family? How many people with ME do you know who shout at and bully their kids while aggressively pronouncing they have to avoid infection?

Edit Add: .....You do know that sick/disabled people are themselves bullied in excessive numbers. Sick/disabled people are bullied by carers, by neighbours, by professionals. The figures do not indicate that sick/disabled people are bullies, the figures state that sick/disabled people are the victims of bullying.

That image is a very old trope used in movies and fiction - that sick/disabled people dominate and control everyone in their environment with their unreasonable and excessive demands - it is an old and well worn denigratory trope.

How many people with ME do you know who sprint to the pub while being too sick to get out of bed?

#
The first character with ME, Inigo, loudly and pompously announces "I have Myalgic Encephalomyelitis!" when Strike and Robin arrive to interview the family. He belligerently refuses to shake hands with Strike, pronouncing he has to avoid infections.

Huh? We don't announce our illness, we hope no one asks. We hope they think we have some kind of other/or generalised illness and that we don't have to say the name - due to cultural prejudice about ME.

I have NEVER encountered PwME announcing refusal to shake hands on the grounds of avoiding infection. Never. Never anyone doing that before Covid, when early on all citizens were advised to not shake hands.

.
 
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I only saw one clip with no other plotline to distract me @Kitty, or maybe you went for the kettle and missed this bit I got so hung up on for lack of balance, or being wondrously blithe maybe you are just not bothered by grownups being particularly silly, i can't guess:

Below is the clip that confirmed to me the hearsay I tend to agree with, from people who – unlike me – had read the book, saw the tv, followed the controversialising news, tho not all of the same opinion

In this clip I see the character portrayed as - or - is much more than grumpy. I have known people in various very difficult conditions and circumstances some of whom apparently can’t help bullying others in easier times too, but its easy enough for that kind of bully to behave when they want to, there is another kind that losses the rag for real, but I don’t believe this portrayal, in this clip, is of someone having a bad hair day and in my observation that is not how people behave because they are in pain. Many people can get irritable at the drop of a hat, normally, but are not so aggressive either and they don't turn their family into whipped dogs and try to intimidate strangers

To me its an alien value system I can't fathom, and it obviates my values

I may seem sensitised by exposure but it took me a long time observing it cropping up everywhere to realise that such rude bullying is not excusable, a bereavement is no excuse either, and as a daily habit its .... getting oneself murdered. Thats too many murders of intolerable disabled characters with no one of their ilk around to show balance. "Wimpy" women can be villified too. Anyone and everyone can be villified. I hear that children are torturing animals for fun taking torturer-selfies to post on social media.

As children we were terrified by tales of the unimaginable "spastic looney monster" and all the ill and disabled were literally locked away so we saw no balance, all we saw was absence. Shall we say I had no role model. The next generation was threatened with the gypsies but I didnt become a gypsy

Over many months I have failed to defuse a viciously hostile neighbour by calling it grumpy to its face with real affection. It seems I don't have the knack. I hate being slagged off as an embittered hostile intolerable soul because I simply don't agree with someone dogmatic. It is confusing to have this stereotype wrongly projected onto me and reinforced over decades by village gossip and official propaganda. And then i get upset when a fictional "real bully" is taken as representative of M.E.

Am I taking this movie too personally ? I could not share a house with someone that stroppy.

If there were other characters with M.E not being portrayed, with intent, as over-indulged and bitter, that would have been nice, and I would not take this one personally. If anyone here with M.E / CFS or Long Covid behaves like the father portrayed behaved in this clip, then I doubt they would admit to it. I don't see how the BBC Medical Advisor managed to convince them that ill people get bitter when its ME / CFS otherwise they are ... astrophysicists ?

On its own the clip about the daughter remains ambiguous, its not clear to me if it might be showing someone who suffers, grieving, or someone histrionic, or if her relative is being reduced to a nervous wreck by the various strains of caring in a vacuum and.or by the daughter misbehaving (which is what I had expected reading other posts).

Two very put upon women and we are not progressed from The Bill etc (the crippled parent or child driving their relative to understandable murder). It scares me. Mobs scare me.

I don't want to gang up on JKR just because she drips some populist poison. I am not sure if it is bitterness or what in her or in me, but its plain as day that the BBC owe us a balancing act to honour their own guidance, and we can fling all guidance and health and safety too out the window like its snowflakes but it wont all melt away though it might need more balance too. Sorry - its not us doing the defenestration

Ps since reading the last post i am reminded of a very shocked friend who can tolerate a telly and found it hard to believe the tv news that people were actually attacking other people because they were wearing face-masks, which did not surprise me so much after listening to some fomentation on the radio, so yes, hygiene is another aspect that is generally disliked by rabble-rousers and here it is being attached to the stereotype, there is intolerance of hygiene. Its all too convoluted for me to encompass.

Personally I always offer my hand and find people on the whole a bit put out probably because i am wearing a face mask, so we know the real fear of the real germ is still out there, underneath. I do wash my hands after touching anything (or anyone) getting routinely exposed to other people. If easier I leave things untouched in a corner for three days or so

Adam pwme said:
https://twitter.com/user/status/1868735191008919890
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I haven't seen this show other than the clip in the last post I just watched. That doesn't seem that bad? Might even say quite impressive for mainstream TV.

One of the cops: Kea got ME and had to move home and live with her mum. That's enough to make anyone bitter.
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That he didn't say "Kea says she got ME." already had me kind of astounded. No she definitely got it, according to this guy.

Mom: She has good days and bad, that's the nature of her condition.
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Another unexpected line. Her condition isn't just a constant level of fatigue.

Mom: I've paid for so many specialists. And..god it's been impossible.
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Kea's not refusing help. Help just isn't there in the specialists.

Mom: "The stress you are causing is..."
Strike: "...terrible for her."
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Strike: "How you feeling?"
Kea: "Not good. Once the adrenaline goes, the exhaustion really hits you."
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Both good.

Strike asks why she contacted another patient online.
Kea: I asked him for some advice.
Strike: Your mum pays for specialists. Real ones. Doctors.
Kea: Yeah.. but he has lived experience.
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That last part is what the linked tweet seems to have an issue with. I don't see a problem.

They've established that she has a real condition and that she does see doctors and they don't help. (Edit: If anything, they're making him look dumb for asking it right after her mom told him about the doctors. The show is playing dumb to give her an opportunity to answer.) So that line isn't trying to say "real doctors would help you, you're pointlessly wasting time online."

Plus, he's a cop. (I think. Seems like a cop show.) It's a question that makes sense to ask when investigating a crime, and it gives an opportunity to let viewers know that people with ME/CFS find value in connecting with other patients.

I think this whole scene is an instance of him, and by extension the viewer, being taught about ME/CFS. For someone who has only ever experienced problems that can be treated by doctors, it might make very little sense to seek someone on a forum for help if she's got a team of specialists she sees.

I wish she said it differently than "lived experience" though. Sounds awkward in regular conversation. Does anyone talk like that?

Kea doesn't seem particularly disagreeable in this scene. She's just casually chatting.

I'd say this little bit is quite good.
 
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Hence my ambiguity in the context of other scenes reported and in the nuances I was looking for by then, so I could see what I would love to see - the illness portrayed, but also I could see other impressions as if looking through the eyes of someone with the opposite confirmation bias. As one does. As happens. (Seeing through the eyes of another who is looking to see an emoting fake)

Not sure why this character couldn't admit to the connection with the other character but plenty of reasons arise to keep a private life private and also be wary of being seen to fraternise, though as its a crime drama its suspicious already..

For me it remains to be seen if this is illuminating the predicaments or caricaturing them. Given my sense of ambiguity the character may or may not emerge as the balance required by the other character

In the first frame I was not sure if it was the detective or a lankier youth with an accent talking as a personal friend about sympathising with some bitterness. In the next scene the detective looked older. and sounded different

Yes I had primed myself to expect and suspect the worst of this character, and it sounds like the character throws some portentous wobbly and cannot easily be understood by the mass audience supposed to be understanding the varying mobility once mobilising - the allegation was that the character appears to be faking it and that this is derived in the context of a JKR history

Yes there are several amabassador points made as long as they aren't inverted later as happens in detective stories, so even if not priming myself to suspect the character I'd be scrutinising all characters as potential suspects to start with and including the detectives

".... lived experience" though. Sounds awkward in regular conversation. Does anyone talk like that?"

Yes in UK professional circles doing community engagement to engage the community its used routinely in speech (and maybe not just for health matters), also iused in the communities' own writings, and it appears to be used as if the communty asked for it, but no its unheard of in speech otherwise around here.

So that could be one of the alleged signs that the character is falling into "grouo-speak" as if in a cult

The theme of interest as reported seems to be a study of undue media influence (if any) which is a theme that alarms everyone, tho we don't all agree on which is the unpalatable groupthink (eg 8 info-wars on you-tube)

Yes I agree "Kea doesn't seem particularly disagreeable in this scene. She's just casually chatting". I remain ambiguous

Thankyou @forestglip for watching and checking it out, got this much further now...
 
bicentennial said:
obviously questionable that one ill person would want to communicate with another despite having a doctor to communicate with instead
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It feels like a reasonable line of inquiry in an investigation, especially for someone unfamiliar with this condition. Get her to explain exactly why they're talking. Maybe he understands and is just seeing if she might slip up in her explanation that might indicate it's more than what she says (which she did).

I stuck an edit in the middle of my last post saying the show also may have been "playing dumb" here to give her the opportunity to answer for the audience's benefit.

Edit: That "lived experience" phrase is the only red flag for me. I'd like to see if that turns out to be just bad writing or the "culty group-speak" you suggested.

Edit 2: Maybe they meant for her to say it weird because she's currently hiding something and flustered and trying to give the "right" answer?
 
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forestglip said:
I haven't seen this show other than the clip in the last post I just watched. That doesn't seem that bad? Might even say quite impressive for mainstream TV.


That he didn't say "Kea says she got ME." already had me kind of astounded. No she definitely got it, according to this guy.


Another unexpected line. Her condition isn't just a constant level of fatigue.


Kea's not refusing help. Help just isn't there in the specialists.



Both good.

Strike asks why she contacted another patient online.


That last part is what the linked tweet seems to have an issue with. I don't see a problem.

They've established that she has a real condition and that she does see doctors and they don't help. (Edit: If anything, they're making him look dumb for asking it right after her mom told him about the doctors. The show is playing dumb to give her an opportunity to answer.) So that line isn't trying to say "real doctors would help you, you're pointlessly wasting time online."

Plus, he's a cop. (I think. Seems like a cop show.) It's a question that makes sense to ask when investigating a crime, and it gives an opportunity to let viewers know that people with ME/CFS find value in connecting with other patients.

I think this whole scene is an instance of him, and by extension the viewer, being taught about ME/CFS. For someone who has only ever experienced problems that can be treated by doctors, it might make very little sense to seek someone on a forum for help if she's got a team of specialists she sees.

I wish she said it differently than "lived experience" though. Sounds awkward in regular conversation. Does anyone talk like that?

Kea doesn't seem particularly disagreeable in this scene. She's just casually chatting.

I'd say this little bit is quite good.
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I think the Kea part has been improved from the book. From what I've read, in it she's stroppy and slamming doors. On tv she seems sick and sad and it's quite sympathetic. On the other hand her suddenly leaving the house implies she's faking it, like Inigo, though she's not shown sprinting away. And that's contrasted with Strike's leg now bothering him so he has to lie down and then hobbles away in pain. I also think the line about 'real doctors' is Rowling having the last word through Strike - Kea is allowed her say, but we're to take away that her opinions about her life are misguided.
 
We had dinner with my daughter on Christmas Day and she repeated her yes answer to my question is JKR horrid to PWME/CFS in the book.

But it may be important to remember that most of the characters are murder suspects and so many of them have dark sides. One is physically abusive to wife and children. The victim's boyfriend is a cheat and a liar. Others are fascist skinheads, and so on. One of them is an actual serial killer. Inigo is, in contrast, just rude. He has every right to avoid shaking hands. It is a very insanitary habit.

Running off despite a wheelchair is of course necessary to make these people plausible murderes too.
 
Also people with ME being fully dressed and their hair combed when someone unexpectedly turns up! Inigo is supposed to have just been 'napping' but he's dressed including a BUTTONED shirt.

I've watched most of it and I'm not sure the plot makes sense. Some of the characters, including Kea, only seem to be there to provide a link to someone else.

However it's been edited down from a book as long as War and Peace so maybe that's inevitable. But that makes Inigo's rant stand out - it's quite long and doesn't advance the plot. To include it makes it seem that portraying people with ME negatively is a key theme of the tv series as well as the book.

Lou B Lou said:
Really ????

The first character with ME, Inigo, loudly and pompously announces "I have Myalgic Encephalomyelitis!" when Strike and Robin arrive to interview the family.
Huh? We don't announce our illness, we hope no one asks. We hope they think we have some kind of other/or generalised illness and that we don't have to say the name - due to cultural prejudice about ME.
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Yes, of course we only tell people that if absolutely necessarily, ironically especially in medical settings.
 
tornandfrayed said:
Also people with ME being fully dressed and their hair combed when someone unexpectedly turns up! Inigo is supposed to have just been 'napping' but he's dressed including a BUTTONED shirt.
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I think that depends on severity. I was able to shower and dress most days and work part time when my ME was mild. I dressed every day except when crashed. Now I live in nighties.
 
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