JK Rowling new book — chronic illness references

I think the TV production much easier could have gotten away with keeping the BID community from an earlier book if they would have wanted. They left it out.

 

Not a particularly interesting contribution from me; but I always thought her writing was terrible once I got to the age of about 12!
I'm of the age that "grew up" with the Harry Potter books - the first one came out when I was starting primary school and the last one around when I was finishing secondary school. Boring simplistic terribly written nonsense!

 

Allowing that others have suggested it might not be such a good thought -- as far as timing I think the release of the book presents topicality that will be soon lost.

I'm not sure I would cast the question as between heading off at the pass or forcing a different portrayal, but rather about setting down a marker by saying "we are here and we'd like you to think about us should you come to consider giving the latest Galbraith novel a TV treatment".

Addressing the BBC and the Production company on the basis of BBC guidelines shouldn't raise any issue of trolling - there's no issue of demanding censorship or attacking the book, just a matter of simply saying people with ME/CFS are a community and that we have legitimate concerns about how we and the illness that affects us are perceived as per the Guideline.

I should say that as someone who hasn't been able finish reading a work of fiction in over 20 years, I'm not well placed to make an informed comment on the book - although perhaps all that's needed is a broad familiarity with how Galbraith has dealt with the facts of ME/CFS and how he/she has presented PwME. Anyway I'd happily defer to anyone else who is energised to send the relevant letters.

 

There should be no need to get into any 'silencing'. There is an issue related to BBC producer guidelines which both the BBC and the producer have a moral obligation to consider - simply asking for assurance that the relevant consideration takes place isn't cancelling anyone.

I wouldn't equate Rowling with other 'controvertialists' - whatever her failings she has made an impact on the world which many people have reason to value: https://www.borgenmagazine.com/facts-about-j-k-rowlings-charity-work/

Rowling is the locus of a £billion business and we should be concerned to influence that business and/or its partners if that is beneficial to the interests of PwME, though of course seeking that influence should be carried with all due care and attention.

 

If we are to tackle this matter at all, it would probably be best to do so when it is out of the limelight.

A simple FOI request shouldn't be labelled as harrassment. The history of ME is littered with examples of how expressions of legitimate concern have been portrayed in ways they shouldn't be. It is what our opponents do.

 

It's not much different than the first episode of House where they mock chronic illness. The show had medical advisers, it's not that they saw nothing wrong with it, it's that it's perfectly normal and how it's done in healthcare.

Hard to see something wrong in something that's seen as normal.

 

House aired 2004-2012 and some things in the TV-industry have changed quite a bit since.

 

I wonder how you film Twitter posts.

"No one will be seated during the spellcheck scene!"

 

you film people reading them with the phone screen in view, or you have them rolling up the screen in front of the scene, while the actors etc remain relatively still. They did it a lot on 'Jane the Virgin', although granted it seems the sheer amount of posts is unusual, but i'm sure they'll find a way to do it

 

Yes, I suppose that on-line correspondence has been depicted on film since “You’ve Got Mail,” and maybe before that. The Sherlock series did a creative job when it came to depicting “texting.”

[ I wonder if, in the film adaptation, the antagonists will only be enemies on-line, while in real life they unwittingly fall in love. Sort of an inversion of “The Shop Around the Corner,” or, uh, “You’ve Got Mail.”

Hey, it could happen! ]

 

The bulk of the messages depicted in the book are not tweets. They are private channel chats in a poorly-described interactive game based on the cartoon. I don’t think JKR has any interest in gaming, or any idea what games are like, but this one involves avatars wandering around completing tasks and chatting to each other.

So it would be fairly easy to find some visual way to liven up the text exchanges, as @JemPD says.

The basic problem for anyone adapting the book is that it is far too log and the number of suspects is unmanageable. You’d normally solve this by crunching a couple of characters together, which might be a useful opportunity to ditch Kea. She is by far the most problematic character in ME/CFS depiction terms, and doesn’t really do that much to drive the plot along.

 

Kea is not the only character with ME. Inigo also has ME.

Inigo is married to Katya (Katya was volunteer PR person for the murdered, stabbed woman Edie. Katya still does PR for Edie's creative partner who is in hospital, paralysed by stab wounds, but still alive)

The detectives Strike and Robin visit Katya to interview her for clues as to the murderer. Katya portrayed as put upon, bullied by Inigo, self sacrificing, and now the sole breadwinner in the middle class family of ill husband and son, 12 year old daughter. They have made all the doors electronically operated so Inigo can get about, spent a large amount to accommodate Inigo's illness, and it's implied this, together with loss of Inigo's earnings has left the family in financial trouble. Katya and Inigo's 12 year old daughter Flavia is clearly pushed out and neglected due (the author makes clear) to Inigo's illness.

The Inigo character is horrible, angry and controlling and a bully. Thanks JKR.




Transcript of detective Strike and Robin meeting Inigo:

'A man in a wheelchair emerged slowly to the accompaniment of “The show must go on” by Queen, playing in the room behind him.

Puffy faced and yellowish of skin, he had untidy grey hair and thick lips that gave him a petulant air, and wore half moon glases perched on the end of his nose. There were flecks of dandruff on the shoulder of his thin maroon sweater. And his legs showed signs of muscle wastage.

Without seeing either Strike or Robin he addressed his wife in a slow quiet voice which gave the impression of a man who spoke only with immense effort.

“Well its a total mess, barely turned a penny's profit this month”



Then, as though his vision was time lagged, he gave what Strike considered a slightly hammy performance of a man who only just noticed there were two strangers in the room.

“Ah excuse me, just trying to make sense of my wife's accounts”

“Darling, you don't need to do that” began Katya, in evident distress “I'll sort it out later”


And looking up at Strike he said

“And you are?”

“Cormoran Strike” said the detective, holding out his hand

“I don't shake I'm afraid” said Inigo, unsmiling “I have to be exceptionally careful about germs”



“Ah” said Strike “Well this is Robin Ellacott

Robin smiled. Ingo stared back at her poker face, and Robin felt she had committed a social solecism

Strike and Robin sat down facing each other on opposite sofas.

From a side room which contained a day bed and a desk, Freddie Mercury was singing “Outside the dawn is breaking but inside in the dark I'm aching to be free”


It seemed to Strike that Inigo's entrance into the room had been highly contrived, perhaps even down to the grandeur and melancholy of the song still playing. From putting down his wife's business in front of strangers, to his implausible pretense that he had forgotten or didn't know that Katya had an appointment with two detectives, to the unsmiling way he had offered his justification for not shaking hands, Strike thought he sensed a thwarted, even embittered, will to power.



“An accountant are you?” Said Strike

(... more conversation I didn't get written down)


…. Inigo's 12 year old daughter enters the room,


“What did I tell you Flavia?”

Flavia “Not to come”

Inigo “Not to come anywhere near ME!”

“I have to be exceptionally careful about viruses”, Inigo explained to Strike.


Inigo to 12 year old daughter Flavia “GET OUT!”





Again. Thanks a bundle JKR.

@Shadrach Loom gives an overview of the Inigo character in post #22

 

If JKR wanted to create a character that inverts the statistica1 rea1ity that disab1ed peop1e are far more 1ike1y to suffer domestic abuse and physica1 and emotiona1 contro1 from their partner or carer than a hea1thy individua1, why did she chose an a1ready stigmatised i11ness for this man in her story1ine? Why not choose an i11ness that most peop1e sympathise with? Nothing about this depiction fits with a severe ME sufferer, it has no basis in rea1ity. For this reason I can't he1p thinking she either has some axe to grind or is an incredib1y 1azy writer who can't be bothered to do even a minisu1e bit of background research when creating her characters.

 

The type of trope above makes me feel like people think disabled and sick people having needs, like door openers and being careful about viruses, makes us rude or cruel, because we «impose» those needs on others. This extreme, exaggerated way he is behaving is how a lot of society feels about people needing accomendations. In an abelist point of view there’s no difference between politely asking for what you need or shouting at your daughter to get out. It’s the «having needs at all» part that is the rude and unacceptable part.

 

While PwME have every right to criticise portrayals of PwME in fiction I think it's important to differentiate between a one or two individuals within a novel, play, film etc where those characters are not necessarily emblematic of the group or class or gender to which they are presented as belonging, and a construct within a work of fiction that is intended to characterise a whole group or class or gender in a profoundly negative way via the characterisation of a few individuals. This is not a new debate: Is Shakespeare's Shylock antisemitic? Howard Jacobson takes a deeper view

My own sense is that a written work is substantially different from live audience theater, and even more so from mass audience broadcast of TV or film. Of course a novel can be a vehicle of prejudice but the nature of the interaction between author and reader seems substantially less charged than when actors interact to give life to a scene. So I don't care much what Galbraith has written, I am though concerned about how it may be translated into a theatrical performance for TV or film.

 

An author should be free to express his or her views, if they are within the law. Whether a public service broadcater funded by a licence should is an entirely different question. Could the BBC, in these days of wokery, even contemplate it.

 

Not just the BBC - Ofcom rules apply to all licensed broadcasters in the UK: The representation and portrayal of people with disabilities on analogue terrestrial television - this seems to apply to all licencees including digital even though the doc hasn't been updated.

"Key issues that were suggested to increase acceptance of inclusion centred on realistic portrayals and the avoidance of stereotyping. The study also identified facilitators for the greater acceptance of disability which included:

• Matching – portraying people with disabilities as similar to people without disabilities;

• Likeability – creating emotional connections between a character with a disability and the audience by portraying shared qualities such as achievement and humour;

• Incidental inclusion – representing people with disabilities on-screen in incidental roles where their disability is not a focus; "


And on the Ofcom site - although BBC research: People with physical disabilities

"Everyone feels sorry for that character… in drama shows with people with a disability they are down and hate their life… most people with disabilities just get on with it and live their life just the best they can and so I’d like to see that.”

 

The problem is that they dont see PwME as "people with disabilities", hardly anyone does. By PwD they mean blind/deaf/MS/CP/amputees etc - the people they see at the paralympics.
We on the other hand, are 'those people who're tired all the time and make a lot of fuss about it - who seem to want the mantle of 'disabled' or to be seen as being very ill, but they look fine to me'.

That's how your average person sees us, and it seems this book will only reinforce that. At best.

<sigh>

 

The UK Equality Act 2010

Definition of disability under the Equality Act 2010

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

The Equality Act 2010 doesn’t apply to Northern Ireland.

https://www.gov.uk/definition-of-disability-under-equality-act-2010#:~:text=You're disabled under the,to do normal daily activities.




Disability: Equality Act 2010 - Guidance on matters to be taken into account in determining questions relating to the definition of disability (HTML)


Meaning of ‘impairment’
A3. The definition requires that the effects which a person may experience must arise from a physical or mental impairment.

A disability can arise from a wide range of impairments which can be:

• 
  
  • impairments with fluctuating or recurring effects such as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression and epilepsy

https://www.gov.uk/government/publi...relating-to-the-definition-of-disability-html

 

Thanks for posting this - it is really useful.

Also makes me think that it is quite a powerful list when you consider the BPS focus on 'personality characteristics' (and making new ones up indeed - as 'perfectionism' isn't really a real personality description as per the science of psychology or a real disorder) and how they are used mainly for marketing purposes I suspect.

A good analyst re: brand could indeed assess the BPS marketing - and I was thinking the other day that some ME collective should be looking at the 'PR' and logging all adverts, articles etc and indeed the 'aspects portrayed' (potentially separating into BPS and non-BPS) which is what many organisations would do. This way such advertising campaigns (who cares what else they pretend them to be) could be mapped out, and once we've mapped what they are pushing as 'who we are' the authenticity and evidence-base for their 'branding' of 'ME patient' they pushed this interrogated.

Of course I'm talking about stigma, but it's bigger than that really and certainly isn't just about destigmatisation but stopping the stigmatisatoin campaigns in the first place, and labelling tropes as tropes etc.