Sunday, 11 July 2021

Dave


Dave, my brother-in-law, has just died after living with Parkinson's for several decades. What follows below is not the whole story of Dave by any means, just the bits I remember best. (We're remembering him
by suggesting donations to Parkinson's UK.)

I’ve known him for more than fifty years. It was a bit of a surprise when I worked that out; I hadn’t realised that I was so old. I was about 18 when he married my sister, the first occasion I’d ever been to in proper formal dress. My parents insisted on that sort of thing.

He was doing a PhD which our dad teased him about; our dad teased everyone about everything. Dave took it in good spirit; I wish I’d learned from him. But then he didn’t have to live with the old bugger.*

Once Dave had finished his PhD, he got a job at Portsmouth Poly as it was back then – I told you it was a long time ago – teaching maths and stats. Dave did everything with enthusiasm. I’ve worked with a few statisticians in my time. I’ve never known anyone get as enthusiastic about stats as him. He was equally enthusiastic as a teacher, and I am sure there are many hundreds of students who have reason to be grateful to him. He developed a lot of research projects in his time as well, and moved into the field of statistical modelling of chemical reactions. If you have any idea what than means, please let me know. Actually there is somebody in the family who does, his son, Ben, who inherited Dave’s way with numbers. Ben saw the light, however, and moved into an entirely different field when it came to making a living.


The Parkinson's was with him for several decades. It was a few years before it was properly diagnosed and he was able to get the appropriate treatment. He lived with it for many, many years. He had a life and he lived it well. He continued for many years to cycle into college. He went on working, researching, teaching, contributing and enjoying his food. He dabbled in many things. Well, when I say dabbled, he put a lot into it – a railway line in the garden, astronomy – proper astronomy with a telescope on wheels, sailing, a human mix of joy in nature with scientific precision. And the curiosity of the researcher never went away. After retirement and with his Parkinson's well advanced, he got interested in a problem somebody told him about to do with yachts, keels and sailing positions. There must be a mathematical model for this, he thought, and began to examine the problem with a computer programme. I never heard whether he solved it, but for him I don’t think solving it was ever the main motive. He just liked messing around with things and with numbers and seeing what they would do together.

He was always good for a chat, liberally sprinkled with dad jokes. We didn’t agree about everything. He supported Chelsea. I mean….


He also continued with his life the way he always had done, not letting the Parkinson's get in the way of that. There were meals out and holidays, even cruises. I would get pictures from time to time which I might have thought were designed to make me jealous if there was an ounce of malice in either Dave or Julia. Nearly every picture we have of him involves a sun hat. He would cook; and when I say cook, I mean cook, not just opening tins, but starting from scratch. I remember him, with a considerable tremble, cooking butternut squash soup, then sashaying across the kitchen with a pan full of boiling soup, everyone else diving for cover, and Dave filling the bowls from the pan without spilling a drop.

One of the treatments offered in later years was brain implants, which involved the head being screwed into a vice and then holes drilled in the skull to insert electrodes. The patient has to stay awake during the operation so that at the crucial time they can tell the surgeon what they feel when the electrodes are wiggled around. The patient is required to keep talking to the surgical team throughout so that they can tell he’s still OK. This was a situation tailor made for Dave, an opportunity to tell Dad jokes for four hours without anyone begging him to stop.** The operation worked, though not as well as it might have done. Moving on from it involved kicking rolled up socks around the house. I have no idea why, but Dave took to it with some gusto.

I was last able to see Dave a good couple of years ago. He was communicating then very slowly with an alphabet sheet, but with his mind fully sharp, and able to absorb and engage.

Covid changed the world for everybody, but particularly for people with any kind of disability or chronic condition. And their carers. With Dave worsening, Julia had to look after him largely unsupported, and with her own bodily issues, for many months. She had to do all the cooking and housework, see to his medication, pick him up when he fell, communicate with him with painful slowness whenever necessary. It was a very dispiriting and undeserved end period for a life lived with such verve. The final decline was mercifully brief, and a shock to all of us. We’d known for a long time that it was coming, but after living with Parkinson's and a gradually worsening body for thirty years, Dave seemed indestructible. He wasn’t, but our memories of him will be.

*   *   *   *   *   *   *   *   *   *   *   *

*My sister reminds me, quite rightly, that Dad was actually liked by a lot of people, and that Dave and he got on very well. My relationship with him was not typical.


**A Dave joke

An American tourist eats at an Italian restaurant one day.  He tells the waiter, “I want a steak. Done just right. Not too well done. Not too rare. Just, tchk, in the groove.”

The waiter goes into the kitchen and says to the chef, “There’s a bigga Americana tourista. He wantsa a steak. Done notta too well, notta too rare, just, tchk, inna da groove.”

The chef says, “OK, He can havea da steak, notta too well done, notta too rare, just, tchk, inna da groove.”

The steak is delivered. The tourist wants vegetables. “Not too mushy, not too crunchy. Just, tchk, in the groove.”

The waiter goes into the kitchen and says to the chef, “Tha bigga Americana tourista wantsa vegetables. Notta too mushy, notta too crunchy, just, tchk, inna da groove.”

The chef says, “OK, He can havea da vegetables. Notta too mushy, notta too crunchy, just, tchk, inna da groove.”

The vegetables are delivered. The tourist asks for roast potatoes. “Not too soft, not too hard. Just, tchk, in the groove.”

The waiter goes into the kitchen and says to the chef, “Tha bigga Americana tourista wantsa roast potatoes. Notta too soft, notta too hard, just, tchk, inna da groove.”

The chef says, “OK, He can havea da roast potatoes. Notta too soft, notta too hard, just, tchk, inna da groove.”

The roast potatoes are delivered to the table. The tourist says, “OK, I’d like some gravy. Not too thick, not too thin. Just, tchk, in the groove.”

The waiter goes into the kitchen and says to the chef, “Tha bigga Americana tourista wantsa gravy. Notta too thick, notta too thin, just, tchk, inna da groove.”

The chef finally loses patience. “You tella da big American tourist. He canna kissa my ass. Not onna da left cheek, not onna da right cheek, just, tchk, inna da groove.”

Monday, 14 June 2021

What to do with a repentant brexiter

 When somebody finally says they regret having voted for Brexit, we are confronted by the problem that there is on the face of it so little that we can do that's positive. Even if we have a repentant Brexiter in front of us, "I realise I was wrong", the automatic response is "It's too f****** late now, isn't it???" and to say so shoutily because there is no other relevant emotion to fit the moment.

So we need to construct something positive to move on with and get the Bregretter to engage more positively with whatever might happen next. As far as Brexit itself is concerned, it really is too late. That is a large part of the problem when confronting the future. The Remainer knows the battle is lost; the Bregretter is confronted by knowing that they can do nothing to undo the decision they made in 2016. The upshot is collective helplessness - a helplessness on which those who brought us Brexit feed.

Getting back into the EU on the terms we had is a chimaera. We're not going to get back in on those terms. If we do want to get back in, we will need to build a majority in favour of rejoining on third country terms, and the majority will need to be big enough and stable enough for the EU to take us seriously. That is going to take a very long time.

But Brexit was not the final goal for the Brexiters; it was always only a stage in the game for them. They are still here, they have nowhere near finished, and they are still prepared to lie, cheat and steal to get what they want.

Our Bregretter, usually, has to start by admitting to having been conned. That in itself is quite a hard thing to do, and especially hard if there is no apparent upside to the admission.

So, perhaps, stage one of the conversation is to say gently, "You were conned weren't you." If they're still a bit reluctant about it, you can say, "It's all right being conned. They've been lying for forty years. They've had half the media on their side, telling their lies for them for all that time. It's not surprising a lot of perfectly intelligent people were taken in."

(As an aside, when somebody complains about the effects of Brexit, it is perfectly legitimate to ask them if they voted for it. The trick is to do it in a gentle and friendly tone.)

They might say, "If only I could vote again". Even if they don't, you can say, you can't get that vote back, but you can be better prepared for next time.

"Because you have to realise there is going to be a next time. The next thing they're going to do is soften you up for trade deals that weaken our workers' protections, or maybe our environmental protections. They'll be working on softening you up to back selling off the NHS. And they'll do it exactly the same way - they'll lie to you, they'll plant stories in the papers, they'll tell the same lies over and over again, and they'll do it for years if they have to. They lied about the EU for forty years to get their way.

"So what are you going to do to stop yourself from falling for it again?"

You might debate around that for a while. (At this point a point of beer probably comes in handy.)

And at the right moment, you say to them. "It's going to take an effort. You can't just say to yourself, 'I won't let it happen again'. You've got to work at being prepared. You've got to start noticing how the right wing press works. Better still, stop reading the Mail / Express / Telegraph - they lie to you all the time. If you're not prepared to give them up, then what you're saying is you don't mind being lied to, and you're setting yourself up for being conned again next time. So you need to be prepared to do some hard work - and I can help you with that.

And then the conversation continues....

The TL;DR version of this is, every Bregretter can be a project. But the aim of the project is not first and foremost to get us back into the EU. The aim of the project is first to turn us back into a democracy.

Addendum

What about those who voted for Brexit and haven't changed their minds? Debating with them (not "arguing" with them, but "debating" with them) has both purpose and benefits too. Firstly, people do change their minds, but they don't change their minds over something like this as a result of one conversation. It happens most often over a period of years as a result of many, many conversations and experiences. Yours might be one in the chain that leads to a change of heart. You will never know, but, if you choose to do it, it's still worth doing. Secondly, when you debate with someone, particularly on social media, you are not just talking to them, you are talking to everyone who reads the conversation. Even if the person you are talking to is apparently a brick wall, others may not be. The first rule about talking to convinced Brexiters, though, is that is should never be compulsory, whatever the putative benefits. Do it if you choose to, but never feel that you have to.


Saturday, 30 January 2021

Read Paul Garner

 If you want to understand ME (and I won't blame you if you don't want to), you should read Paul Garner's piece in the BMJ, and then you should read the comments after it.

Paul Garner, an experienced and respected professor at the Liverpool School of Tropical Medicine, specialising in infectious diseases, has written about his recovery from long Covid. He also states that he met the criteria for ME/CFS. He used positive thinking, most likely in the form of the Lightning Process, though he is unspecific about that. He then claims to have "looked down the barrel of the ME/CFS gun and disarmed it", a sentence he is quite proud of, as he uses it in his tweet signposting the article.

Not surprisingly, he has been met with consistent contradiction from ME sufferers and specialists who know what they're talking about. What was noticeable to me is the measured nature of the responses. There is anger, not surprisingly, and there is some robust language, not surprisingly, considering that he has just told millions of people that their illness is all in the mind. He is met with polite, albeit vigorous, rebuttal from people with ME, from their carers and from medical professionals who work in the field. I am deeply impressed with everybody who replied to him, because it feels so degrading to have to say, yet again, ME is real. It is not just in the mind, it is not something you get over by having a positive attitude, any more than a broken leg is. Hope can help, but it is not a cure. And when you've hoped for twenty years, and you still don't have a cure, hope feels a bit bankrupt.

Garner's article is a prime piece of gaslighting, perfectly carried out. He phrases his article very cleverly, never quite saying "if I did it, you can do it too", but that is the thread woven into everything he says. Perhaps in the enthusiasm of his newly recovered life he doesn't realise what he has done. I hope so. But I am surprised that a professor of such experience should not have investigated and understood the medical science behind ME, and equally surprised that such an eminent academic should so misunderstand the difference between anecdote and data. And I am surprised that the BMJ should give its powerful platform to such a medically and scientifically illiterate piece of writing.

To Paul Garner: You may have disarmed the gun for yourself, Paul, and I am glad for you that it happened. But you just made the gun blow up in everybody else's face.

To everybody else: if you read his article, and then the comments on it, you may have a much better understanding of the awful, physical, bodycrushing, mindsearing, emotionwrenching reality of ME.

Monday, 4 January 2021

Let's fix this country first

 I have thought for a while that Brexit is not just about Brexit. Leaving the EU is only a step on the way for fundamental Brexiters to get what they want, which is to turn Britain into a neoliberal paradise – Singapore on Thames is exactly what they want. That being the case, populism is not going to disappear, because it is still the primary tool for securing that end. Farage has already switched from Brexit to covid: he is adept at latching on to anything that stokes resentment, and we will continue to see the politics of resentment at high intensity for years to come.

For that reason, I think Nick Tolhurst here is right about future prospects but wrong about strategy. I’m coming to think more and more that figuring out how to rejoin the EU is the wrong focus, for two reasons. The first is that the populists will use it against us very successfully: it will actually do us more harm than good. The second is that if we are to be acceptable as renewed members of the EU we have to fix this country first. We have massive problems – the voting system which denies power to people, the Parliamentary system which denies power to MPs, the media system which allows newspapers to tell lies without consequence, the tax system which allows rich people to find all sorts of ways to protect “their” money, the economic system which promotes inequality (and inequality kills, as we are seeing ever more with Covid), etc, etc, etc.

This is a long term struggle. (The Brexiters have spent forty years refusing to accept the result of the 1975 referendum and plotting for this moment.) In some ways we should view it like a military campaign. Don’t fight battles you can’t win – if we focus on re-entry to the EU now, we will not win that battle, we will merely give strength to our enemies. And secondly, you don’t just slam in and fight a battle when it is offered, you first shape the battlefield – you organise your army, you build up supplies, you send small elements to nibble away at your enemies’ strength, you pick when and where you are going to fight. That takes a great deal of organisation and preparation. And you always start with what you have now, not with what you wish you had, So we start with this country, here and now – it’s rotten voting system, its rotten economic system, its rotten political system, its rotten culture which promotes argument over conversation.

So my feeling is we should work on our internal problems, which is a massive job in itself, and let the gravitational pull of the EU gradually repair our relationship to the point where we can begin again to talk realistically about our integrated future.

I end with a titbit: a very interesting thread by German historian Helene von Bismarck on why Brexit does not signal the end of populism.


Sunday, 22 November 2020

Forty years in the making

 First published in LibDemVoice 22nd Nov 2020

Liberal democracy is in crisis, particularly in the UK and the USA. In the UK we are perhaps bemused at how we could have come to elect such a corrupt, cronyistic and incompetent government, and in the USA there is much debate over how the Trump lump has not gone away despite four years of Trump’s Twitter tantrums.

There is a tendency to view this as a short term phenomenon – what went wrong four years ago, six years ago, even ten years ago. In my view this has been coming for forty years. It has not been inevitable but, during the neoliberal period (roughly from the 80s till today), social forces and personal decision making have moved us steadily towards the situation we now find ourselves in.

In a nutshell, the elevation to power of Thatcher and Reagan marked the start of what was seen to be a move towards freedom, opening up societies all over the world to the liberating forces of the market. This had two sides, globalisation, an ineluctable social force beyond the power of individuals to affect, and the strategy of global elites both old and new, to use globalisation to create new wealth and power for themselves. They have been very successful. So it turned out to be a move towards freedom for some, but by no means all. The elites used liberalism as their watchword, while ignoring the principle of liberalism that their freedom is only valid in so far as it does not compromise other people’s freedom.

At the same time there has been a steady corrosion of community and democratic values, partly because the new markets require it (they don’t work without precarious labour) and partly because of media elites who found that telling lies worked, and political elites who did not care to confront them. People sold on consumer capitalism found easy answers to all the ills in their lives in the lies told them by the media. Rupert Murdoch and Hugh Dacre, among others, spent decades preparing the British public for the Brexit lie. They have succeeded in making many people’s lives precarious and hoodwinking them into blaming others for that.

The reason this perspective is important is that it sheds light on our immediate future. The Trump lump and the Brexit lump are not going to go away. Their defining feature is resentment, honed over forty years. It won’t disappear just because Trump has blown himself out and Brexit has happened. (Farage is already looking for new ways to foment resentment by attacking lockdown.) If we want to make our countries more liberal again, then we have to look at long term solutions as well as short term ones – there is no quick fix for a problem that has been forty deliberate and persistent years in the making.

We still need our short term activity. We can and must fight to win elections and to influence policy. But we also need a long term strategy as deliberate and persistent as theirs has been. The epitome – and the nadir - of the liberal attitude was the remain campaign in 2016, the most disastrously disorganised and inept campaign I have ever been involved in. We deserved to lose. Our biggest mistake was expecting the voters to be sensible. That did not happen and will not happen again until we make it happen. We must seek to persuade over a long period of time – a drip, drip of persistent, deliberate and targeted conversation over many years, if we want our countries ever to be generous again.

Thursday, 15 October 2020

A good read but a flawed conclusion

 Larry Elliott on Britain's covid crisis, a good read but a flawed conclusion, particularly in his observation that in a crisis people change their behaviour. He's right they do, but in different ways, which is why his comparison with Sweden is wide of the mark.

"Scientific models suggested that Sweden would suffer 96,000 Covid-19 deaths in the first wave, owing to its government’s decision to have only mild restrictions, but they presupposed that Swedes would carry on as before. They didn’t, with the result that the death toll is fewer than 6,000..."

The implication - which Elliott does not follow through on, as his focus is mainly on the economics - is that a similar light touch would have had similar results in the UK. I doubt that very much. Sweden embarked on its light touch policy knowing that it could rely on the large bulk of the Swedish population taking sensible steps to preserve not only their own lives, but other people's too.

We cannot, unfortunately, make that assumption about the British population. For forty years, since Thatcher, mainstream influence in our society has been bent towards encouraging people to live lives of self based consumerism, to consider nothing but their own desires. Many people have not followed this path, but far too many have.

We are at the end of forty years of Thatcherite induced consumption based individualism, of which Johnson and Cummings' government is the apotheosis. Some large proportion of our population have accepted what they have been told, that permanent hedonism is their right, and no killjoy is going to come between them and their day out.

We do need our government to change the way they do things. It's not actually about competence. The government is capable of being competent. But competence requires time and energy, and this government doesn't care enough to put the effort in. We need our government to care. That on its own will do a lot to defeat covid. But it won't solve our basic problems. For that we need to change our society, our economy, our politics, in fact our way of life. We need to move away from unbridled consumption and individualism towards a more human centred way of doing things. 

Friday, 6 December 2019

Christmas instore torture


Every year I have a tussle with Tesco when they start playing Christmas music instore. I ask if they are going to play it all the time, and they say we have to, head office tell us to. When I contact head office, they say it’s up to the manager. This dialogue has replayed in different ways every year. This year I decided to ask them some questions. It took two goes on their email contact service due to a character limit of 1000. Below I quote my original query and their reply.

It’s quite ironic to see a reply of this nature just as they have announced joining the yellow lanyard scheme (which Customer Services refer to in their reply).

The tl;dr version of both is this.

Me:
- I find the music played instore at Christmas distressing. Does it have to be on all the time?
- You know some of your staff hate it. What care do you have for their wellbeing?
- You know some disabled peope are triggered by noise. What consideration do you have for them?

The answer I got was basically:
- we don’t care about our customers (We do not need customer approval to play Christmas songs in store”)

- we particularly don’t care about disabled people (“if you do have an issue with the music, or the levels of the music, then this can be raised in store, and this will be changed based on the stores discretion”. Every store manager I have ever spoken to says they have no discretion.)

- we don’t care about our employees either (Should staff members have any issues with the music, then , as with our customers, this will be taken into consideration, based on each store.” - I have spoken to a number of staff members over the years, including this year, who hate it, but who can clearly do nothing about it.)

- so stuff you (politely).

What the answer actually says looks quite reasonable. But it is uniformly contradicted by what store managers have told me over the years, that they have no discretion. It also fails to answer the questions I ask about the reasons for the music being played (because it’s Christmas time???) and fails to answer why it has to be played every minute the store is open.

Later edit: and the attitude is contradicted by Tesco Scotland, who have taken a step in the right direction: https://pipedown.org.uk/tesco-extends-its-quiet-hours/

Here’s the full version of my message. (The one Tesco got was slightly different, as I had to trim it further to fit within the character limit, and I did not keep a record of the trimmed version.)

* * * * * * * * * * * * * * * * * *

I discovered today that it is once again the time of year when you inflict on your customers the annual mental torture known as "Christmas" "music".

I am sure that some of your customers appreciate it, and probably a large majority don't care either way. But for a minority, myself included, the experience is, as I described it above, torture.

During the summer I was unfortunate to enter the store when there was some kind of charity event on involving three days of dance music. I had to leave rapidly, and the duty manager, to do her credit, came out to speak to me about the experience. She said she had worked in stores which had a regular stimulus free time weekly, which for me would be a great boon.

I know I will not change your policy on this - I have tried each Christmas for several years and had dismissive, inaccurate or unbending responses. But would you please answer some questions. These follow in the next email.

Follows last email
1) What evidence do you have that your customers so enjoy the music that they need it for 3 weeks continuously; and, do you any evidence at all that having the music on helps your bottom line?

2) Does it have to be so relentless? Does it have to be on every hour of every day for the whole of the next 3 weeks?

3) How do you discharge your duty of care to your employees? Maybe some enjoy it or just zone it out. But for some it is torture having to listen to that noise for 8 hours on end. Uncontrolled sound is a major factor in causing mental stress. Do you have any care for reducing the stress on your entire shop floor workforce?

4) How do you discharge your duties under the Disability Discrimination Act? I do not have a mental disability, just a pronounced and physical aversion to this kind of noise. But many people with autism and related conditions are triggered by extraneous sounds. What steps have you taken to make your stores as welcoming to them as to other people?

Rob Parsons

* * * * * * * * * * * * * * * * * *

And here is their reply:

Dear Rob,

Thank you for contacting me, I hope you are well.

I was very sorry to hear about your concerns over the Christmas music being played in store.

We do not need customer approval to play Christmas songs in store, just as we do not require customer approval to play music throughout the rest of the year. Is this something that affects you throughout the year?

This music is played, because it is the run up to Christmas, and not because it has any sort of affect on our bottom line. As with most retail stores, we will play festive music during the festive period. Should staff members have any issues with the music, then , as with our customers, this will be taken into consideration, based on each store.

I am not sure why you would raise the Disability Discrimination act, as this is irrelevant. As with all of our customers, if you do have an issue with the music, or the levels of the music, then this can be raised in store, and this will be changed based on the stores discretion. We simply do not have the foresight to predict when disabled customers will visit the store, so changes will be made on an as needed basis.

In various stores, we have arranged quiet hours, for people with these exact difficulties, as we realise that with some disabilities, this can have a huge impact on them, so we do try to accommodate these issues where we can. We also have a sunflower lanyard available, for people with invisible disabilities, so that colleagues can be made aware of any issues that may be present.

If you do experience any issues with the music being played in store, I would advise that you raise this with management in store, as they will be able to help make your store experience better.

Kind regards