COVID-19 Chronicles: Episode 1 “Solitary times in an information vacuum”

COVID-19 Chronicles:  Episode 1                       “Solitary times in an information vacuum”

If there’s one thing that raising an undiagnosed kid has taught me, it’s that living with uncertainty is hard. Not being able to imagine what the next year, month, week or even day might bring means that normal daily life is awkwardly bookended somewhere between denial and panic. You can fill the shelves with plenty of good stuff in between, but there are still days when the bookends themselves stand taller on the shelf than the many wonderful narratives they frame.

Today, the bookends seem to have grown like beanstalks after a long night of nourishing Spring rain. Somehow disarmingly taller in the morning, caricatures of the tiny seeds said goodnight to just the evening before.

Except these are the beanstalks of nightmares. Far uglier and more spectre-like than even the ones dreamed up by our infant selves after a particularly theatrical fairy tale reading before bed.

For many of us who have vulnerable family members, whether that’s a disabled child, a relative in treatment for cancer, or loved ones with long term conditions, we have been oscillating with greater frequency between denial and panic for some weeks now. Hoping that this viral colossus would swerve, or spare us, but with a rising, racing panic in our chests, galloping ever faster as the deafening silence from our government casts us further and further adrift.

Just a few weeks ago, gentle jokes flew around in offices and coffee shops about quite fancying the idea of two weeks at home. Not so much liking the idea of catching coronavirus, but if we had to hunker down for a bit, just imagine how organised our cupboards would be, the books we could read, the box-sets we could get stuck into… Even with the slightly alarming prospect of having to entertain the kids, it seemed to be a minor inconvenience, a distant and not too unpalatable concept.

For my own part, I had imagined that because we have a disabled child in the family, we might move on preparations a little earlier than most. Stocking up the cupboards, getting ahead on work projects, and being ready for the inevitable announcement that schools were to close. Special schools first, of course, because so many more of the children are vulnerable.

I trusted that this announcement would come well ahead of the threat of the virus itself. Many of us with disabled children thought the same. Cautiously ready, expecting to have to start our Easter holidays two or three weeks early.

Except it’s now Sunday evening, following a week of national lockdowns and school closures in just about every country but ours.

Three days ago our Prime Minister stood up on television and told the nation that ‘many more of us will lose loved ones before their time‘.

The medical and science experts who flanked him said nothing of how to avoid this human annihilation from happening, talking only of flattening curves by washing our hands, keeping football fans in stadiums and their loyal Tory fans off cruise ships while propping up the NHS by keeping schools and general society open for business while the virus sweeps through.

There was little talk of protecting those most at risk from this novel coronavirus.

Still nothing has officially emerged since that time to advise those most at risk, despite a rising death toll and exponential case growth against a backdrop of ever-decreasing diagnostic testing in the community.

However, government rhetoric since that day has erroneously cemented in the minds of media and the general population that ‘vulnerable’ is solely interchangeable with ‘elderly’ in the face of COVID-19. We are told (albeit informally for now), that soon our over-70s will be asked to keep themselves at home for months while this virus sweeps through like an interminable hurricane.

And yet our young vulnerable people, children with heart conditions, disabilities, epilepsy, respiratory impairments, are – according to current government advice – supposed to be packed off every day into what may be an invisible front line, the open beaches of public transport and school communities, where the silent hurricane could make first landfall.

Much has been made by our government leaders of having to set the country onto a war footing to see through this challenge.

And yet when we truly were last on a war footing as a nation, we protected our children and our most vulnerable from the front line. Not because they were the prime target of our enemy, but because that’s what civilised, humane societies do. 1.5 million children, pregnant women and disabled people were evacuated to safer locations in just two days.

Today, the threat we face is different but perhaps equal in magnitude and potential for suffering and loss of life. But we find ourselves in an information vacuum. Adrift and othered by the popular discourse that this is a ‘mild illness for most’, ‘children don’t seem to be badly affected’ and that we must ‘protect the elderly’.

We find ourselves nowhere.

As a parent of a disabled child who has no diagnosis, this is familiar territory. We are not a central part of any conversation. Sitting on the fringes of the disability community because most of us are not disabled ourselves, overlooked at the school gates because our experience of parenthood is so different, invisible in the workplace because we fall unceremoniously down the gaps between both parental and carers policies (where they even exist).

We are well versed in taking decisions to protect ourselves and our children and in doing so in isolation, because we do not fit the mould. We are well practised in spotting threats as they loom on the horizon and doing what we have to do to keep our children safe and well.

Often our instincts speak with razor sharp accuracy to pinpoint what needs to be done, well before the voices of medical or educational authority around us see it for themselves. We have witnessed them acting too late, too many times, to look to them now with unguarded faith.

With this experience behind us, and seeing more of the same as our government shapes its next Swiss-cheese tidings to the population in face of this new threat, it is with a familiar heavy hearted certainty that many of us will not be sending our children to school tomorrow morning.

We simply cannot trust our government to give the right advice to keep our vulnerable children safe.

Are we forgotten, or are we deliberately left out to perish?

I don’t know.

But with Darwinists and eugenics-sympathisers holding the rudder as we steer our ship through this storm, it feels safer to jump overboard while we can still swim for the shore and find a place to shelter while the hurricane passes.

If you’re a moderate, community-minded Tory, please think twice at the ballot box on Thursday

If you’re a moderate, community-minded Tory, please think twice at the ballot box on Thursday

I see you, quiet, generous ones. Hello there, people who like to do the right thing.

I see you, diligently working at your job, volunteering at weekends, stopping to chat to the lonely old chap at your local shop.

Because that’s what decent people do, right?

You have worked hard all your life. Raised a family. Played your part in the school PTA. Paid your financial dues to society.

Because that’s what decent people do.

You will put an x next to your Conservative candidate’s name on Thursday.

Because that’s what decent people do.

Maybe you have a few niggling doubts, though you don’t know where else to place your faith but in the blue box.

Maybe, like so many others, you are exasperated by the political landscape we find ourselves in, but your fear of a Labour government is ingrained like lead running through a pencil.

Maybe, you fear that if you don’t vote Conservative, we face economic collapse and a mushroom cloud of nationalisation.

Maybe, you are an actual real live person who isn’t Boris Johnson and who just wants to get Brexit done (although I’m yet to actually meet one, so ‘hello’ if you’re reading).

Maybe you earn over £80,000 and simply don’t want to pay more tax (and to you I say go right now and find one of the online calculators that will show you how little extra you will really pay).

Corbyn is your Cryptonite. I get it.

And here, I will let you into a little secret. I don’t love Corbyn either. And I am not naive enough to think that the only party to have dark forces within its depths is the Conservative party.

But as a parent of a disabled child who is stuck in the quagmire of a safe Tory seat I have to tell you it’s like inhabiting one of those existential nightmares where you scream and scream but no sound will come out. Like wading through quicksand, sinking a little further with each step. Or both. Like rubbing your belly and patting your head at the same time while reciting the alphabet backwards, but less fun.

I am at a total loss as to how, in a part of the country so inhabited by the generous of heart and the thin of pocket, an immense blue tide is expected to wash over us once again. Many of us here who long to see our little forgotten corner of Cornwall coloured in red, yellow or green are expecting to find ourselves in familiar discomforting territory, scraping our faces against the sea bed, engulfed beneath the wave.

So here I am instead, behind my laptop screen, doing my best Celine Dion inspired lyrical soprano and asking you to think twice before you vote Conservative on Thursday.

A thin, reedy but not yet despondent warble.

Are you thinking ’bout youuuu, or us?

Because this Conservative party has shown its true colours. And they are not the colours of morality, tradition, stability, responsibility or prudence that so many have chosen to vote Conservative for in the past.

We know this Conservative campaign has been littered with lies and deceit. That 88% of Tory campaign ads on Facebook contain misleading information (compared to Labour’s 0%).

We also know what Boris Johnson, and many of his colleagues think of sick, vulnerable and disabled people.

Only last week, we saw Sally Ann Hart, the Conservative candidate for Hastings and Rye (Amber Rudd’s old seat), say at a hustings event that disabled people and those with learning disabilities should be paid less because some “don’t understand money”. This is the same candidate who is under investigation for Islamophobia and for liking a Nazi phrase on social media.

In the summer, Nadine Dorres, was appointed by Boris Johnson as mental health minister, after having sparked outrage in the disability community when she publicly used the term ‘window lickers’.

The examples of hate speech and ableism are endless, and easy to find.

Most concerning, though, and eye opening to the future we may succumb to under this Tory party are the many questions coming to the surface about Matt Hancock, Secretary of State for Health and Social Care.

Just this week, as he was dispatched like a carrier pigeon on speed to put out a political fire oop North that began with an over-worked A&E department in Leeds and a small boy with flu, he managed to simultaneously stoke the fire and lay a smouldering pile of his own.

The Matt Hancock shaped mess started with a bare-faced falsehood about ‘hoards of Labour activists’ descending on Leeds General Infirmary, one of whom ‘threw a punch’ at a political aide. These falsehoods flew so far as to reach both BBC and ITV’s political editors before they had to retract and apologise. (It transpired from some on-the-ground video footage outside the hospital that in fact there were just a couple of people on bikes, and no fisticuffs.)

The mess then really started to give off a pungent stench when social media erupted with multiple posts claiming that the whole incident with the youngster in A&E had been staged, which were then quickly revealed to be trolls and bots spreading untruths that were shown up by the hospital’s own statement and apology for the boy’s standard of care. One such troll happens to be a personal friend of Matt Hancock.

And so is her son. Who, if you dig deeper, also happens to be a member of some highly questionable far-right, white supremacist groups. All there to see on social media, on his personal account. This is real life, not hearsay.

And so I ask, do we want government ministers who fraternise with far-right, white supremacists? Should we be concerned about that? Or let it brush over us, write it off, after all, this stuff always exists on the fringes of politics, right?

I mean, I’d quite like to sit back and just ignore all this political guff, and get on with raising my family in peace. And yet I cannot ignore the rumbling, unsettled feeling about the direction in which we are moving.

Because it isn’t on the fringes anymore, it’s right there in plain sight. And I am worried.

I am worried about a health minister who has far-right, white supremacist connections. Particularly one who also happens to be proposing full genetic sequencing for all babies at birth.

Because we know what that particular cauldron of far-right white supremacy and genetic medicine stirs up.

It begins with the far-right infiltration of government.

It is facilitated by advancements of medicine and apparent breakthroughs for people with disabilities. Offers of help and hope for diagnosis and treatment for families with disabled children.

Last time this particular sequence of events occurred in Western society, it ended in genocide.

And here in the UK, right now? The Deciphering Developmental Disorders and 100,000 Genomes projects are falling over themselves to gather genetic data from families just like mine who have a disabled child. Giving us hope for answers and access to help. We have been on one particular study for seven years, our entire family’s genetic information somewhere in a lab in Cambridge, with no answer in sight.

Forgive me if I’m more than a little sceptical of the parallel timing of the rise in genetic medicine alongside the swing to the right in our politics.

Forgive me if I’m more than a little bit frightened, of what a far-right, white supremacist sympathising government or society may end up doing with this information.

In America, we are already seeing the development of DNA based dating apps that are designed to eliminate genetic conditions. Surely that’s a good thing though, right?

Well, no. Actually. And for those in any doubt, a quick read of this academic paper “What is immoral about eugenics?” should clear up any questions.

The existence of difference in our human population is now very much at stake.

If you can get behind the paywall, actor Sally Philips has written an excellent piece in The Times about how raising her son (who has Down Syndrome) has shown her the importance of making every type of human feel valued.

If we cannot measure and appreciate our human value in spirit, soul and love and instead we create a world where humans are valued for their physical and mental aptitude or economic output alone, I fear very much for where we will be.

And so I hold on to hope that the decent people will think twice about the future we are creating when they choose which box to put an x in on Thursday.

The prospect of a modern day pre or post natal Aktion T4 programme happening right here in our country now doesn’t seem ridiculously far-fetched if we continue being blindly tugged further and further to the right.

To those not in our shoes this may seem like catastrophising, it may seem like adding 2+2 and getting 5. But we are living in unusual times where we have seen governments quite willing to break the law to push through an agenda. Where personal greed and the manipulations of wealth appear to come first in public life, before the primary duty to serve the needs of the people.

This is so much more than just a Brexit election. Behind the Brexit smokescreen, there is an ideological choice to make. We are truly at a fork in the road. But one that is easily missed amidst the fog.

And that’s why I’m asking you to think twice.