Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Tuesday, 27 September 2022

The Queen's Cousins

Fell down a bit of a rabbit hole last night and find myself needing to put in my tuppence-worth, quelle surprise.

I remember watching The Queen's Secret Cousins (2011) and it annoyed me as misrepresentation at the time. I was reminded of that irritation during the recent coverage of the death of HM Queen Elizabeth II where the tale got wheeled out again.

So last night, set off by a vague reference, I found myself looking to see if there was any further information and I found this rather lovely review from The Guardian (source: https://www.theguardian.com/tv-and-radio/2011/nov/17/tv-review-the-queens-hidden-cousins) which all the quotes in bold are from.

"The voiceover whispered of "dark secrets". Only none were forthcoming in The Queen's Hidden Cousins (Channel 4); unless by secrets you include a story that was all over the tabloids in 1987." 

There's almost a quarter of a century between 1987 and 2011; it's not unreasonable to think that a lot of viewers in 2011 had never seen or heard of the scandal. I was 9 years old in 1987 and disinclined to read tabloids. Nowadays a lot of the tabloid reading adults in the UK weren't even born in '87! Certainly it's been no secret for many, many years but it's still getting trotted out intermittently as a 'shameful scandal' against the Royal Family although none of the people involved are in any way Royal - the late Queen Mother (1900-2002) was Royal by marriage, not by birth, and this is her family.

I would like to take a look at the idea that The Queen Mother was in any way culpable for her nieces treatment. Sure, she was a patron of Mencap (a charity for people with learning disabilities) but at a familial level was it really anything to do with her?

Let's start with the Bowes-Lyon family tree (source: https://www.youtube.com/watch?v=ngRK08NpoNo): Elizabeth Bowes-Lyon, later The Queen Mother, was the ninth of ten children; from them she had 23 nieces and nephews. The eldest of that generation was only 10 years her junior.

The cousins in question were Nerissa Bowes-Lyon (1919-1986) and her sister Katherine (1926-2014), the children of her brother John (1886-1930). Not only was this brother fourteen years her senior but there were four other siblings between John and Elizabeth. 

Obviously all families have different dynamics but from everything I've seen over the years siblings usually have closer relationships to same sex siblings who are also close in age. It's not particularly remarkable that Elizabeth may not have been especially close to John. Siblings don't always stay in close contact anyway. 

My mother has a brother and sister - she had a fairly good relationship with her sister but no contact with her brother for years now. My father has three brothers - all close in age - and he has nothing to do with any of them.

There were certainly a large number of other family members who could have but did not interest themselves in Nerissa and Katherine but no one's mentioning them, I assume because they're not Royalty.

"Maybe the Royal Family's apathy towards Katherine and Nerissa was catching"

If anything it would have been the other way about - if the Bowes-Lyon clan had interested themselves more maybe the Royals would have also. Families can be estranged for any number of reasons and <<<UNPOPULAR OPINION>>> perhaps it's more toxic to expect people to be close just because they're related.

Aside: So much has been made of the Duchess of Sussex cutting her attention seeking toxic father Thomas Markle out of her life but people (and MSM) choose to ignore that Thomas has never met Ashleigh and Chris Hale, his grandchildren by Meghan's half-sister Samantha (Ashleigh is approximately 37 while Chris is about 35) and estranged from her other daughter, Noelle Rasmussen. But the narrative is all poor Thomas, cut out of Archie & Lilibet's life. I'm certainly not disputing the poor Nerissa, poor Katherine narrative but they had Bowes-Lyon and Trefusis relatives before the House of Windsor and there might well have been other factors at play. Just using this as an example that interpersonal relationships are frequently complicated and the media doesn't always present a balanced perspective.

This is WITHOUT factoring in that the Queen Mother was a wife with young children herself (the late Queen Elizabeth II and her cousin Katherine were the same age), her husband's family and her Royal duties. To my way of thinking the idea she should have known Nerissa and Katherine's fates is a bit of a stretch, especially as families often tried to hide how disabled their children were.

The Royal Family proper (i.e. the lines directly related to the monarchy) are not insubstantial in themselves. The Queen Mother had in-laws, and the late Queen Elizabeth II had another seven cousins on her father's side (source: https://www.youtube.com/watch?v=b6F5JC9Ut3I). There are also more distant cousins such as those via Edward VII or Queen Victoria who may well have taken precedence over their Bowes-Lyon relations with the young Princesses Elizabeth and Margaret Rose.

All things considered I don't find it at all remarkable that The Queen Mum (allegedly) didn't know what became of two relatives out of so many. She had plenty else going on in her life.

"Surely someone must have noticed that the women had disappeared"

WHY?! Neither Nerissa or Katherine would have lived at all publicly. They would not have gone to school, or have been debutantes, or simply attend family events. Who exactly would have missed two young women who had probably not been seen since early childhood?!

John's widow Fenella (nee Trefusis - this is relevant later) is described as having been 'a leading guest' at the wedding of Princess Elizabeth & Philip Mountbatten in1947 (17 years after John's death; source: https://en.wikipedia.org/wiki/John_Bowes-Lyon) but it does not necessarily follow that the family were close. A lot of people include close relations in their wedding parties... and never speak to them for decades. 

As an aside to my own familial experiences I have far less cousins but even in these days of social media I have little idea where they are, what they're up to, if they've put any kids in institutions... How much do YOU know about YOUR extended family?

"Katherine and Nerissa Bowes-Lyon, then aged 15 and 22 respectively, had been secretly placed at Earlswood mental hospital in 1941 by their parents"

Well, that's blatantly untrue, isn't it?! Their father John had been dead for 11 years, all that time Fenella was raising her four surviving children alone; she never remarried. Also, define 'secretly'? They didn't make it public, it was later reported (quietly) that they had died... but there's a subtle difference between secrecy and privacy. Secrecy makes it sound underhanded, and perhaps it was. But it could just have been a private family matter no one felt like sharing.

"If the family had stayed together for that long, what was the breaking point? It must have been something quite dramatic."

Also nonsense in my humble opinion. Any parent of a severely special needs child (let alone a lone parent, let alone two special needs children, let alone trying to balance the needs of their other kids) can reach breaking point over nothing at all. Eventually an awful lot of carers burn out.

It is also worth noting that in 1941 Nerissa and Katherine's sister Anne, then 24, was recently married and had her first child that year (Lady Elizabeth Shakerley 1941-2020). Is it possible that the sisters were hospitalised so that Fenella could be an active grandmother, or perhaps their disabilities made them a risk to the new baby. Just because someone is mentally disabled it does not follow that they are passive or inactive, physically incapable of doing harm; indeed, some mentally disabled people can be dreadfully violent.

Fenella Hepburn-Stuart-Forbes-Trefusis was 52 in 1941. She was likely getting to old to physically care for them any more. She may well have felt that they would be happier and more settled in an institution. Perhaps she had health issues of her own (as many carers do) and was concerned that her daughters ought to transition to a hospital before her own death.

Second guessing the strains which Fenella was under is vague at best but remember that the 1940s were not only a different age culturally speaking but also technologically - there were no communication devices for the non-verbal, wheelchairs and other aids were primitive at best, even basic care needs like laundry would have been quite burdensome without modern appliances. Certainly Fenella was better placed than most but that does not infer that she had it at all easy.

"None of this would have mattered so much if there had been any attempt to discover why the two women were placed in care in 1941, as this was the one part of the story that was genuinely still a mystery"

They were placed in care because they were non-verbal and estimated to have a 'mental age' of six years - isn't that enough of a reason? I assume the author, John Crace, means what medical condition(s) led to this unhappy situation... But between their medical records being justifiably private and the lack of genetic diagnostics when they were young it's very unlikely a definitive answer could ever be provided.

A different Anne, Anne Tennant, Baroness Glenconner had her engagement (to the future father of Diana, Princess of Wales) broken off after "his father objected to the match on the grounds of "mad blood", as one of her grandmothers was a Trefusis" (Source: https://en.wikipedia.org/wiki/Nerissa_and_Katherine_Bowes-Lyon)

This is no mere paranoia about heredity, but based in fact. I mentioned earlier that Nerissa & Katherine's mother was a Trefusis, I have shown an example of another Trefusis descendant having her engagement called off due to the family's reputation... Fenella had five children - two disabled, two healthy, one who died in infancy. Her only sister's story followed the same pattern: Harriet Hepburn-Stuart-Forbes-Trefusis (1887-1958) married, in 1910, Major Henry Nevile Fane and had seven children (source: http://www.thepeerage.com/p1246.htm#i12451): three disabled, three healthy, one who died in infancy. There was quite plainly something wrong in that family and potential suitors were understandably alarmed.

The three disabled children of Harriet were also, eventually, life patients at Earlswood - Idonea (1912-2002), Rosemary (1914-1972) and Etheldreda (1922-1996) (source: https://www.tatler.com/article/real-story-nerissa-and-katherine-bowes-lyon-the-queens-cousins-the-crown-season-4). It is perfectly possible that Harriet and Fenella having between them five daughters with similar, if not identical disabilities, may have chosen to send the young women to Earlswood together. While apparently cutting off all contact with the five girls it was likely a hard decision; very few parents get up one morning and decide to write their kids off completely. It's also worth noting that popular thought at the time was to make a clean break of it - that it would be distressing for the disabled person to see family members and not be taken home with them, it would likewise be extremely painful for the family members leaving them behind.

It seems improbable that a birth-injury disability such as cerebral palsy would (a) not be recognised as such and (b) affect at least five of twelve cousins (after all, we don't know whether the two who died in infancy would have been similarly affected or not). Much more likely is some genetic illness although what motivation would there have been for seeking a diagnosis at such a late stage when their siblings children, and indeed THEIR children, all appear to have been unaffected. Sure, there's curiosity but realistically only Katherine could have been genetically screened, the others having died before such testing was widely available. Even if she had been screened that does NOT guarantee any answers. 

"If the 85-year old Katherine had made her first ever public appearance on the Buckingham Palace balcony: that would have been abusive"

Obviously this was a scenario that was never going to happen - as a Bowes-Lyon she would not have got a balcony spot in a month of Sundays. But even if it had been an option I agree with Crace; it would have been abusive. While hiding people with disabilities away is, thankfully, largely done away with there is nothing admirable about putting them on display to be gawked at like in old freak shows. Like I said earlier - there's a big difference between secrecy and shame, and privacy and protection.

Maybe their family did them dirty but it was in line with societal norms of the era and judging them by the standards of several generations later is pointless. Also, no one has ever really addressed whether Earlswood was a good, bad, or indifferent place to be. I also think this sort of story is immensely unhelpful to struggling carers who may need to consider residential homes

Perhaps we need to consider empathy before judgement, especially in a historical context where little can ever be certain. 

Monday, 4 November 2019

On Perspective

Today I got a bit of grief for not understanding a joke.
It goes like this:

So the main thing is that I have never heard this myth that people having olfactory hallucinations during strokes smell burned toast.
It really helps if you've heard the story the joke is dependent on. But I still don't find it 'funny' unless you factor in that burned toast in the ocean is just soggy bread. And that's not exactly hilarious either.

Perspective is a huge thing too and strokes aren't especially funny. Illnesses, diseases, medical conditions in general...problematic. It's one thing to watch a disabled person make jokes about their own condition - people are allowed to poke fun at themselves, it's when people poke fun at others it starts to get difficult.


So, having seen this do the I retweeted it with the following: 
I've seen this one do the rounds several times and it's no good
I have to ask... WHY IS IT (allegedly) FUNNY?

Probably just me being *sensitive*
but I don't find anything about strokes funny.
The @thelifeofsharks twitter account retweeted me with the (partial) comment: 
We’re sorry you don’t understand the joke.
We’re not for everyone.
Wow, 'I'm sorry you don't get the joke' is such a non-explanation for why you're 'joking' about a very serious issue. 
Another tweeter replied: 
i found it funny, and ive had strokes before. it's set up well,
and uses the toast thing effectively to make a joke
that even i can laugh at
Look, I'm happy for you. I don't know what kind of strokes you had or why but I see from your bio that you're pretty young - maybe that has enabled you to make a good recovery or maybe you're just in a really good headspace to accept what happened to you because, again, perspective is a pretty important factor.

This, for example, is MY perspective.
When I was 6 years old my grandad had a stroke*. They didn't have MRIs or whatever in those days and there's no good way of defining different severities of stroke anyway. He lived another 16 years pretty much in one room like a prisoner in his own home. He had a poor quality of life; he died in 2000 aged 91 - of complications from the catheter he'd had to use because of the stroke.
His wife died less than 3 months later, also of stroke, but then she was 95.
Their youngest daughter, my mother, worked her ass of all those years to keep them in their own home - doing all their groceries & laundry, doing the middle-of-the-night call outs when he fell. My dad did all their gardening and DIY.
My mum had her stroke* on 16th April 2018 aged 73. She has been affected far worse than her father was - he could stay in his own home with assistance, meals on wheels, carers in twice a day... My mum has to have someone with her 24/7 which is me (with a little help from my daughters & dad - when they're available).
See, this doesn't just wreck the life of the person it happens to. I had to give up my own life, my hopes & dreams to care her. And if that sounds callous I don't much care - I did not have a happy childhood and I never had a great relationship with either of my parents. I hadn't long graduated, my youngest kid was recently off to uni - I was finally gonna get my life back. Unfortunately, for both of us, I'm an only child and my mum's partner wasn't up to the job. So now I'm stuck at home being a domestic drudge on zero income living my worst nightmare. The things I have seen and done in the past year and a half...
*We're fairly sure both had subsequent strokes (I think they were confirmed at autopsy in my grandfather's case; my mother is terrified of all things medical so we've pretty much nursed her through the 'episodes')

So yeah, I'm glad that the stroke-survivor who responded that they found it funny is in a position to do so. But that's far from true for all. For many people the position is utterly devastating. You won't find my mum laughing about her funny incontinence or the fact she chokes when she eats or drinks or the million other shitty things she has to endure every damn day. I'm not laughing either, I cry myself to sleep most nights wondering what I did to deserve this karma.

Brain damage* is horrific however it happens but somehow I think it must be a little easier to accept if there's a terrible accident or something. The thing with a stroke is that there's not an outside cause, your body can just do it to itself. My mum was watching TV for heaven's sake! If she hadn't has a partner to phone and raise the alarm...well, she'd have ended up like Michael.
Michael lived down the road from us. Back in the spring his neighbour called his ex wife (my godmother) because she was concerned...he'd been dead a considerable time. I hope to God he dropped dead of a heart attack or something but he could've had a stroke and just lain there 'til he died of dehydration. Maybe there was a reason no one cared about him in life but it's a horrible way to imagine someone going.
*Only in the past couple of weeks did I become aware that there's also such a thing as a spinal stroke - so you can end up permanently and completely paralysed for no damn reason.

I'm certainly not gonna say I speak for any stroke survivor when I'm not one myself; I'm not even gonna claim to speak for any other person whose life has been affected by stroke. Maybe I am being an over sensitive snowflake but this is my reality.
For some people a stroke is little more than a TIA - a 24 hour scare. Some have more serious experiences that require a longer recovery time. Some people will never fully recover; some don't even get a partial recovery but remain seriously impaired as long as they live. Some will die. And they're all called stroke, regardless of whether you can live a fairly normal life, go back to work etc...or whether you're left catastrophically disabled. Lumping all stroke-survivors (and their loved-ones) into one category like that is just nuts when it's a ridiculously diverse set of circumstances.

  • Dead within 28 days of stroke - 28%
  • Dead within one year of stroke - 41%
  • Dead within five years of stroke - 60%

Source: https://www.saebo.com/stroke-statistics/

  • Around 2% of the UK population is a stroke survivor.
  • Stroke is the UK's 4th biggest killer (1 person every 13 minutes) and the leading cause of acquired disability.
  • 1 in 8 deaths worldwide is caused by stroke.

Source: https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2017_final_1.pdf

I find the statistics pretty hard reading though:
About half get a brain scan WITHIN AN HOUR of arriving in hospital, almost 9 out of 10 patients have a brain scan within 12 hours. At 18 hours in they were still insisting it couldn't possibly be a stroke and finally agreed to do a scan 'just in case'.
In Scotland 8 out of 10 people are admitted to a stroke unit within 24 hours. We're in England, my mum waited a week for a bed to become available.
And then the shit about therapies and rehabilitation - everything stopped dead as soon as she was discharged. No physio, no speech therapy, nothing.

So yeah, forgive me if I don't find it funny.

Monday, 23 September 2013

Cop Out

Yesterday I was packing some things away in the attic which is how there came to be a pile of old newspapers in my bedroom.  They were acquired newspapers so when a headline caught my eye as I was getting ready for work this morning I stopped to have a read.
The newspaper in question was The Daily Telegraph of Monday, September 9, 2013.  The headline read: Your test favours fat men over fit women, police told.
What it came down to was this; "ninety three per cent of men passed the test, despite half of all male candidates being overweight.  Just 60 per cent of women finished within the time limit, though only a third were overweight."
Well, first allow me to address the absurd assumption that fitness and weight are synonymous.  That.  Is.  Absurd.
I was first told I was overweight at the age of 11:
Yeah, cos I look so fat there...goodness, I'd kill to be anywhere near that skinny again!  Anyway, eventually I did get very heavy indeed hitting my all time worst in April this year and yet I'm fitter than you'd expect.
Five years ago I found myself, a morbidly obese asthmatic, comfortably able to out-swim a 'healthy weight' friend; two years ago my GP recommended I get less exercise as my 25,000 steps per day work pattern was ruining my feet; a year and a half ago I busted my right knee trying to beat my then thirteen year old daughter at limbo...  Muscle weighs more than fat and weight does not equal fitness.
But what really gets me about this article is the sexism.
Not from the allegations that "male officers gather around while the female recruits bounce and jiggle and run around, and they're wolf whistling and clapping" (if a police candidate of either gender can't hack a bit of harassment they have no business being in the job) but from the assumption that women deserve special treatment.
And I quote:

  • It is "clearly" biased to expect women to finish within the same time as men
  • The gates were not wide enough [for women], so men with slinky snake hips could weave through quite easily
  • Women also made almost twice as many errors on the "body drag" task, which relies on upper body strength

What the fuck?!  Not so long ago women were fighting to prove themselves equal to men, to be allowed to do a 'man's job' and now some dumb-ass behavioural scientist (yes, I mean YOU Professor Craig Jackson) thinks women deserve extra time and modifications to tasks which are based on the job successful applicants will be required to do.  Excuse me?!  Is the real world going to give a female police officer more time to chase a suspect or provide more space between obstacles for her hips???  Of course not!
It's unfashionable to say so but men and women are NOT equal.  Women are not, on average, as strong or as fast as male counterparts...just look at the Olympic and world records for things such as 100m and weightlifting.  It's not the police fitness test that is inherently unfair but biology.
The test itself is called the Gender-Neutral Timed Obstacle Course (GeNTOC) and the clue is in the name...gender is not a factor in this test.  Gender should not be a factor in your ability to do your job either - the 60% of women who pass the test are equal to the 93% of men who pass as both can do the job they're training to do.