Are people actually broken?

(or is divide and conquer just normal now)

One of the great positives in the sea of excrement that has flowed since 2020, has been the way social media has connected clinically vulnerable, and otherwise covid cautious people around the world.

As the real life people retreated, the relief of finding others (albeit virtually) who were in similar circumstances has been palpable.

There were academics and medical people who cared by virtue of their professional rigor, individuals who cared by virtue of their position in their community, and many many people who cared because they lived with or loved someone who lived with a medical condition that made them vulnerable to adverse outcomes from covid infection.

Slowly but surely, our algorithms did the good work and brought us into each other’s virtual realms.

Some of those connections were able to spread mercifully (and cautiously) into everyday life.

Some have become invaluable online friendships.

Most remain as super effective virtual receptacles of validated, aggregated and vital information.

Super helpful. Super vital.

Especially given the reality that most of us were living - where real life social shifts meant that the vast majority of our real life people were gone.

I could be wrong but I think for most of us, the social media peer group have been very much like a cool drink in the middle of an unrelenting desert.

A calming force in a world that now feels like the absolute opposite.

And as much as I find my increasingly virtual social life vital, the fact that I am somehow supposed to be cool with the majority of my human interaction being typed and video chatted makes me a bit stabby.

Virtually, of course.

(me being stabby)

…

Covid has been a uniquely shitful addition to the lives of the clinically vulnerable.

For most of us, life wasn’t exactly easy prior to 2020.

Depending on what we, or our loved ones were handling, everyday life was a juggling act of medical treatment and its consequences, advocacy on multiple fronts, keeping the bills paid and dealing with the impacts of all those things on our interpersonal relationships.

For yet others in the cautious/vulnerable community, 2020 or thereabouts was the beginning of this multi-layered dance when covid became long covid.

Apart from a mostly unwanted ninja level information bank of medical stuff, the thing that unifies most of us in this community is a deep need for other people.

It is physically and emotionally impossible to keep your chronically/acutely ill self or a loved one, alive without other people.

People to help with logistics, people to be the experts, people to listen and give us a safe place to fall.

Because falling may not be what we want to do, but it’s something we really really have to do on a more regular basis than your average bear.

…

For most of us, watching our people either retreat or becoming a clear and present danger was not fun.

More than just not fun in the ‘oh crap my friendship/relationship has ended’ normal life kind of way, it was a ‘my circumstances are no longer compatible with other people’ kind of way.

Quite literally, the opposite of having a person shaped place to fall.

As it became clear that public policy and social structures were also veering away from differentiating to accommodate the vulnerable, the tides rose a little higher for a lot of us.

Because that took away the logistics people and the experts.

So now we were looking at juggling knives, without gloves or a medical team on standby.

Or indeed an audience even remotely interested in the difference between their knife free existence and ours.

(me, doing life)

…

People often say, what did you do before covid? What’s so special about this virus that has made you all ‘I must hide at home and avoid the rest of the world?’

For everyone in the clinically vulnerable community, the answer is going to be slightly different.

But the underlying elements are the same.

Life has thrust all of us into a spot we didn’t expect but have learned to accommodate.

It’s a place where the everyday risk assessments have been replaced with a series of Venn diagrams.

‘What is happening?’ (not sure, could be this, could be that)

‘How do we treat it?’ (not sure, try this, try that)

‘How do we stop it from getting worse?’ (not sure, but if this happens… try this, try that)

There are rarely definitive answers, but if there are, you respect them like your angry grandfather.

Mostly, staying safe and well is about recommendations.

Covid related recommendations have come to centre around immune, neurology and organ and vascular risk.

So, if the condition you live with centres around these things, your troops start to assemble.

If you have medical issues around immunisation (aka a history of non-response or injury), the tanks start to appear.

If you have lived a life of medical mystery (not as airy fairy or rare as you might think), where medical professionals are accustomed to scratching their heads as yet another crisis unfolds, then your natural default is shelter in place.

The added kicker in 2025 is that your one safezone – the hospital, is no longer in fact safe.

So if you do push the boundaries of avoidance, then the help you need comes with even more risk, not just for you but for the people you rely on (if you are lucky enough to have such people).

…

It’s understandable that if you haven’t lived a life that previously involved health related life juggling, then all this caution seems a bit crazy.

Obviously, I think the complete lack of caution that I observe in many people is certifiable, but I do get that the fact I haven’t walked into a shop in years now is unusual.

What remains inexplicably un-understandable, in my opinion, is the aggression, suspicion, derision and insensitivity that has come flying at people who are already working hard to maintain some kind of equilibrium.

Even more vile, is the lack of respect for the clinically vulnerable that has informed policy decisions around covid mitigation from the point when we coined the phrase.

Last week, out of the UK covid enquiry came the extraordinary admission from the head of the UK vaccine taskforce, that clinically vulnerable Britons were ‘deprioritised’ during decision making processes around vaccination and prophylactic protection.

While few governments have had the fortitude shown by the current British government in launching a comprehensive review of their pandemic related practices, there is little doubt that governments around the world made (and continue to make) similar decisions with similarly grotesque motivations.

It would be naïve to think there is not symmetry, geo-politically in this realm. In fact, if governments weren’t talking to each other in a situation like this, there’d really be something to worry about.

…

Speaking of which… now we are at the beginning of 2025.

The Trump v2 era.

Wherein the leader of the gang is backed by his tech bro Avengers.

Where words that offend, prickle, challenge or inconvenience the powers that be are expunged from the internet and mechanisms which protect individuals from attack are dissolved in the pursuit of ‘free speech’.

This sociological shift is centred right in the middle of the last place where those who have been squished like bugs on the windscreen of public health can gather for support.

In the last month, the word ‘covid’ has been removed from the names of massive online groups full of the clinically vulnerable. There’s been encouragement to choose words carefully in posts and replies, lest the group be flagged as going against ‘community guidelines’.

At the same time, many of these groups have become increasingly fractious, with people scuffling around in misery competitions, questioning who really needs support, in anticipation of the already limited resources disappearing altogether.

It’s the social media equivalent of 1984 meets the Hunger Games.

All while the rest of the world are living in a Nancy Meyers movie like nothing is going on.

…

If online life (aka most of life for the clinically vulnerable) is destined to become Covid Fight Club (first rule: don’t talk about covid), then untold thousands of people will lose one of the last threads (see what I did there?) keeping them intact.

Forgive my histrionics, but this is really starting to feel personal.

So, I’m trying to fight back.

…

I’ve started trying to re-build bridges in my real life.

It’s not easy, given that every single person comes with a level of risk, but it feels pretty necessary.

This weird hands off state of being seems pretty permanent now, and as awful as that feels, I have to at least try to dilute the cesspit of negative emotions that has become my social psyche.

I’ve reached out to some people, re-established contact where I can, slowly tried to initiate conversations that will hopefully build some bridges.

It’s been interesting to see how people who see themselves as NOT at-risk navigate covid risk, what drives their decisions in living the kind of life I cannot, if there is any kind of internal reconciliation about the impact of their behaviour on people like my son.

On one of these, outdoor, socially distanced outings recently, someone who was biblically close to me (clearly not in the religious sense, because me) managed to open up a little about his reaction to my situation.

What became blindingly clear is that by the time our connection imploded, there was zero leeway given for the weight of pressure on me as I watched the world slowly turning its back on the only person I am duty bound to love.

He felt that him constantly bending around the implications of disability, chronic ill health and the added covid risk may well be tolerable but its impact on me should never have found its way into our interactions with each other.

In essence, because he was trying, he was a good guy (and to be fair, he was) but, I, struggling with the realization that the world would not blink an eyelid if my son died and therefore not always at my most pleasant or balanced, was clearly not. At least, not enough.

It was a kick in the guts to hear this, but it’s also incredibly enlightening.

Because in this conversation I really didn’t want to have but very much needed to have, I think I have uncovered the reason why seemingly good people can individually and systematically write off the needs of the clinically vulnerable.

…

Most people are doing the best they can, rolling through each day and taking whatever punches come at them.

For most people, life is transactional.

You give something, you get something in return.

Or maybe it’s Newtonian - for every action, there’s an equal reaction.

• Work hard, reap the rewards.

• Be healthy, live longer.

• Give a little, get a little.

It works, right?

But it’s not like that, if you’ve been visited by the chronic health fairy.

For us, it’s a much more nuanced game, no matter how much you want it not to be.

• Work hard, pay all your money to doctors and ancillary support.

• Be healthy, but know that your healthy is not other people’s healthy.

• Give as much as you can, but know for sure that you can’t possibly return in equal amounts.

It’s not just a nuanced game, it’s a pretty much impossible one.

And more importantly, the point of the game is different.

Clinically vulnerable people and their loved ones, don’t choose to be so focused on life and death, we HAVE to be.

Quality of life and the avoidance (wherever possible) of death are our forever dance partners.

Other people do not think like this, because they do not have to. Life is just life. Live it, enjoy it as much as possible, don’t worry too much about the limitations.

If I could get people to understand anything it is that clinically vulnerable people, like many other marginalised people, live in the limitations.

It’s not a choice, it’s a requirement.

Because the implications of NOT being cognisant of risk are too great.

We don’t want to grovel for accommodations and differentiations, but we have to.

We shouldn’t have to beg for respect, but we do.

We don’t want to be siloed into hidden virtual (and now at threat) communities just to feel understood, and yet we are.

And like it or not, all of that has an impact - logistically (obviously) but also emotionally.

It shifts the frontiers.

…

Which brings us to Peter Gabriel.

On the day I learned that he didn’t kick off this song repeating the phrase ‘She’s so boomp-ti-ay’.

I don’t know why that made sense to me, but to be fair, his pronunciation of ‘Jeux’ is weird.

…

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Hans plays with Lotte, Lotte plays with Jane

Jane plays with Willy, Willy is happy again

Suki plays with Leo, Sacha plays with Britt

Adolf builds a bonfire, Enrico plays with it

Whistling tunes

We hide in the dunes by the seaside

Whistling tunes

We're kissing baboons in the jungle

It's a knockout

If looks could kill, they probably will

In games without frontiers, war without tears

If looks could kill, they probably will

In games without frontiers, war without tears

Games without frontiers, war without tears

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Andre has a red flag, Chiang Ching's is blue

They all have hills to fly them on except for Lin Tai Yu

Dressing up in costumes, playing silly games

Hiding out in treetops, shouting out rude names

Whistling tunes

We hide in the dunes by the seaside

Whistling tunes

We're kissing baboons in the jungle

It's a knockout

If looks could kill, they probably will

In games without frontiers, war without tears

If looks could kill, they probably will

In games without frontiers, war without tears

Games without frontiers, war without tears

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Jeux sans frontières

Songwriters: Peter Gabriel

Games Without Frontiers lyrics © Real World Music Ltd