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.

Concerns of Consent and Bodily Autonomy

I dare say I've blogged about abortion before but I can't be arsed to look back through everything. Bodily autonomy and consent have been very much in the news lately, particularly with American states trying to pass laws that take women's control of their own bodies back to the dark ages.
For the most part my previous social media posts make my point well enough so I have just copied them up here - my comments in bold blue, other people's quotes in bold dark red. However, if you care to scroll down there are a few other examples of consent being 

A thread I posted on Twitter on 15th May 2019:
I was pro-choice before my parents forced me into an abortion at 8.5 weeks when I was 16 - they had kicked me out, the father walked away and I probably had HG. I am still pro-choice, because no one's choice should be taken from them. #YouKnowMe
As for the idea of 'if you don't want an abortion, don't get one'... No one wants to be pregnant and homeless / broke / frightened / sick / abandoned / abused. No one wants their unborn child to be incompatible with life.
And I'm fairly sure no one particularly wants to be pregnant by rape or incest... Actually, I doubt anyone has ever really 'wanted' an abortion. It's on no-one's bucket list. It's a procedure to take you out of a situation you can't bear to be in.
Something I posted on Facebook 17th May 2019:
Just cos something has a heartbeat doesn't make it alive. Until it is capable of living separately from the mother it is nothing but a parasite. Let's give all the men who think this is a great idea intestinal worms and ban them from getting treatment! ... and ostracise them (like society often does to unmarried mothers) cos they're dirty and gross.
Something I posted on Facebook 18th May 2019:
People who think all pregnancies are blessings... 
(a) have probably never been pregnant, have almost certainly never had complications. Trust me, 9 months of puking is no blessing.
(b) have probably not met many children, have almost certainly never spent an extended amount of time in their company.
(c) have probably never experienced social isolation or poverty, certainly can't imagine being pregnant without a supportive partner and / or family. Or homeless, or broke. Or all of the above.
(d) have very little idea of how unprepared some people are for the lifetime of responsibility. There's a lot more to having a child than giving birth.
(e) have zero perception that some people are pregnant with people they wouldn't want to be anywhere near them or a child - a manipulator, an abuser, a paedophile, a rapist...a relative.
(f) have zero understanding that some people don't actually like or want kids. Quit assuming everyone else wants the same things as you. Live your own bloody life and leave others to live theirs!A thread I posted on Twitter on 22nd May 2019:Men shouldn't have a say on abortion... but neither should 'women'! The ONLY person who should get a say is the individual who is pregnant. [Link to BBC:
https://www.bbc.co.uk/news/world-us-canada-48262238]I don't see why there needs to be a law about what people do with their own bodies. Law can stay out of my choice to have or not have an abortion / a tattoo / a piercing / plastic surgery. Remember when suicide was a crime punishable by death?!I suppose the idea is that some people need to be protected from themselves... like that woman who got a boob job. You know who I mean, third boob woman. [although, thankfully, that turned out to be a hoax https://metro.co.uk/2015/01/27/that-woman-with-three-boobs-has-been-arrested-for-drink-driving-5038779/ sadly many other extremes are true] Mental competency tests before surgeries?!


Over and over I'm seeing posts of no-uterus no-opinion (like having a womb makes you a woman😠) and that men shouldn't have any say in what happens with women's bodies... but women shouldn't be passing laws on what other women can do with their bodies either; there are pro life women - presumably lacking in empathy or even a basic awareness of the dangers of pregnancy & childbirth. It's not a gender issue, it's a personal issue. Personal choice, personal control of your own body - there is nothing more important. 
And for those who cry "but what of the child's body?" - the child has no life beyond its mother, it has no autonomy and no rights. Personhood begins at birth. I did some philosophy for my degree - ever looked at The Violinist thought experiment? Here it is considered a direct parallel to rape: 
https://philosophicaldisquisitions.blogspot.com/2017/03/the-ethics-of-abortion-and-violinist.html but in reality sex can be consensual but that doesn't equate to consensual pregnancy. The Cabin thought experiment in that article says the stranger needs 9 months of care - reality is being told, at the end of 9 months, that you now have to care for that stranger for LIFE. More on that in a moment.
There's also a logical fallacy in assuming the child would WANT to be born. My mother chose to have me... but she quickly realised her mistake. I failed to bring her closer to my father, I upset her neat and tidy world, I was entirely more problematic than she had bargained for. My dad did not choose to have me. I grew up feeling unwanted and it was not nice. Unfortunately I then went on to do this to my own kids as I was in no fit state (as a teenager on welfare, suffering depression etc) to look after myself let alone children (I don't even like kids, I have no maternal feeling) and I begged to place my kids for adoption... no one would listen to me. 
If all pregnancies were forced to go to term what does society do with all the unwanted babies? America in particular has very little support for born children making their predominant pro-life stance very hypocritical. Almost every time the responsibility for that child falls to the mother, and that responsibility is 18+ years rather than 9 months; fathers often pay zero child support. All these unwanted children need to be clothed and fed and housed and educated... and state care or impoverished parents (even those currently able to amply provide would struggle if they were unable to control how many children they have). And then there's the child's mental wellbeing to consider - hard enough to be an unwanted child, a burden - but add to that being the product of rape or incest? That's a lot to assume a kid would want to bear.

Tweet from @AuthorKimberley 7th May 2019:
A man raped an 11-year-old and Ohio’s “heartbeat law” requires her to have his baby yet no law provides for the child's welfare once it’s born.
My response tweets, 9th May 2019:
Lots of offers in the comments to help get the girl to a state where abortion is more freely available... but no one seems to be querying what the girl wants.
Of course it's unlikely a girl wants to have a rapist's baby, it's unlikely an 11 year old wants to carry a child to term, some might argue she is too young to make such a choice but taking the choice from her is a violation too.
It's so easy to assume what someone wants but it's a dangerous way to look at things. Lets face it, anti abortion legislation exists because men fear their 'children' being aborted. They don't want abortion so no one can have it.
Women who support anti abortion legislation invariably seem to comment about their struggles to conceive. Their own desire for a baby blinding them to the desires of others. Or maybe they always lacked empathy. Who knows.
If you order pizza in a restaurant does that mean the family at the next table want pizza too?! Of course not. But over and over you see people arguing that abortion is wrong because they would never choose one. Illogical.
The inability to contemplate sexual violence *might* be from a deep rooted aversion to the topic but more likely it's just ignored by people with fixed ideas and no empathy for others.
Empathy. Freedom to make your own choices. Bodily autonomy. Pro choice must always mean pro CHOICE and not assuming what anyone wants, regardless of what we would do in their circumstances.
I hope this girl gets all the support she needs. I hope she is able to make the right choice for herself and not forced into ANYTHING by anyone, least of anyone the lawmakers of her state.

There are precious few scenarios where anyone should be making decisions about someone else's body, in any sense - in my opinion that power should only apply to non verbal children*, people in comas or the catastrophically disabled. When my parents did their Enduring Power of Attorney documents to put me in charge of things if they became incapacitated (as my mum has) they did not fill out the medical part so I have no control beyond regular next-of-kin rights to say what medical treatments they can or can't endure. In some ways that bothers me as I don't trust the medical profession to make those judgement calls.
What age, or what degree of competence does someone need? To my mind a child of 10 (or even younger) may be entirely able to understand the risks and benefits and be capable of making a decision so why should that choice be denied? Declaring someone incompetent because they have made a decision that doesn't sit well with their doctors or family is pretty darn gross too. 

Parents naturally enough make decisions on behalf of their child - vaccinations, dental treatments etc - but where do you draw the line? For example I personally dislike cochlear implants. A permanent intrusion into a child's skull is apparently better than deafness. Okay, so I'm not deaf but is it REALLY so awful?! My parents consented to squint correction surgery on me when I was 3 years old, something I would not have consented to if it had been held off until I was old enough to have a say. I don't hugely resent that it was done to me but I would rather it had not been. Apparently, much as cleft lip repair is done for functional reasons as much as cosmetic, so too is squint correction - I could have lost my sight in my left eye...but if anyone had asked me they would have known my brain was already rejecting the signals from that eye. Years of deeply unpleasant patching followed surgery but didn't fix it. So basically, in my humble opinion, it was completely pointless other than for cosmetic reasons...and as I am a hideous potato-person that's pointless squared!

Then there are other procedures parents have done to their children; take a sadly routine operation often performed on baby boys for religious reasons or for dubious medical reasons (usually false claims of it being more hygienic or concerns about retraction later on): circumcision.
Here's a story of a young man who, having had a botched operation as an adult, took his own life: BBC 17 April 2019 https://www.bbc.co.uk/news/uk-england-47292307
And here's a follow up story of other men suffering: BBC 12 May 2019 
https://www.bbc.co.uk/news/uk-england-48057183
If adult men can suffer such terrible complications from an operation they chose to have should the procedure be banned entirely? Of course not! There is a world of difference between a person or their parent consenting to a 'necessary' operation and something that is done to a healthy child for archaic or invalid reasons. It is insane for parents to consent to such a procedure other than in the most pressing of medical necessities. If a man of age chooses freely to be circumcised (for aesthetic, or religious reason) then that is his freedom... but even so, how do you ensure that? A man may be under pressure to conform, to do so against his will - just as I was pushed into an abortion. That is no choice either.

Comment found on a YouTube video about birth control (due to concerns about menstrual discomfort) for a severely disabled child 20th May 2019 "I was born with a disability and at age 9 I had [a hysterectomy] done I am now 38 and still not in menopause" Assuming that statement is true... what kind of parents, what kind of DOCTORS do a hysterectomy on a 9 year old unless the kid is catastrophically disabled? A girl who is immobile & non verbal with no chance of improvement (such as the subject of the video) is one thing - she cannot communicate pain, consent to sex or raise the alarm about abuse - but to do that to someone who is capable of commenting on YouTube videos... that's got to be wrong. Even if her disability precluded motherhood, drastic surgery at such a young age is really extreme - who knows what medical advances might be made?
EDIT: Just saw this article which includes discussion of Nazi era forced sterilisation
https://www.bbc.co.uk/news/world-africa-48273570 and felt it ought to be included here. Such 'treatments' need to only ever be used when it is in the best interests of the individual - either medically or if they irrevocably unable to consent to sexual activity.

Which brings me to my last example for today of consent and children:
https://www.bbc.co.uk/news/uk-england-beds-bucks-herts-48311660 
"About 1% of children have genes which put them at high risk, meaning they have a greater than 10% chance of developing type 1 diabetes." So with a 'greater than 10% chance' of developing an illness a five month old baby is going to be used as a guinea pig. What the actual hell?! I'm sure type 1 diabetes is no fun thing but using a (currently) healthy child's body in this way seems to me all kinds of unethical - what if their 'treatment' TRIGGERS the onset of the illness?! 'Greater than 10%' isn't even all that much, if it was greater than 80% or something there'd be a much better argument in favour of this being in that child's best interests.

Consent is the person concerned's right. If and only if they cannot consent should that right be put into the hands of another - a parent, a carer or a court appointed guardian - and THEN consent should be only for that person's best interests - religious circumcision and medical experiments definitely don't come under that heading.
The problem is that we all have very different ideas of what is best. The best person to decide what is best for X is X and if X can't decide, due to incapacitation or extreme youth, whoever acts for X has an incredible responsibility. How you protect X from the poor judgement of Y I have no idea but 'protecting' X from their own (supposedly) poor judgement is to invade their rights. We all have the right to make our own mistakes - we just have to accept responsibility for our actions and not blame others when we suffer regret.