Category: Disability

Surf’s Up

I don’t plan on doing this regularly, but just wanted to give a quick heads-up about COVID numbers in the UK.

As you can see, we are well and truly into our second wave, with numbers now on a par with the initial wave. I’m using our government’s official source (as at 24/9) for these graphs, and the different colours you see represent the different countries of the UK. There is speculative talk in the media about a second wave happening in the future, if we’re not careful. I’d suggest that it’s here already, wouldn’t you?

Deaths, however, have not followed suit. There will be a lag between contracting the virus and death, so I am wondering whether we are just looking at that lag, although there was no great lag during the first wave. Time will tell, I suppose.

Locally, my area has very few cases, but that was always the case. If we do see a spike, it is a cluster of three or four people. I heard on the news tonight that Glasgow University alone was dealing with more than a hundred cases, so I think I’m getting off lightly.

Personally, I’m still as locked-down as I was back in March – it’s not so much being unable to go out, it’s more having no overriding reason to go out, and choosing to stay home.

I was prompted tonight because I looked at the numbers for Italy, whose government seems to have done a far better job of keeping a lid on this second wave.

Cheap

Just watching the News here. The main items, of course, are UK news.

Boris Johnson.

They knew about him before he became mayor of London. They certainly knew about him afterwards. Like his cousin in the US, former advisors made small fortunes with their revelations. Unable to grasp the detail. A bit of a buffoon.

But he has charisma. Oh, the applause he received when he promised to lie in front of the bulldozers if they started digging at Heathrow Airport.

When he happened to campaign on the right side in the Brexit referendum (and it was a margin call) he became impossible to ignore. He was promoted to the cabinet, and was a part of the government which… approved the new runway at Heathrow. But no matter, talk is cheap. Say one thing, do another. Talk is cheap.

But he has charisma. Conservative MPs elected him their leader. He has charisma. He unified the party. With a straightforward message on delivering Brexit, he won a General Election. Decisively. He has charisma. He’s now trying to row back on the original Brexit agreement, but no matter. Talk is cheap.

COVID. Takes us all by surprise. We appreciate the value of Test and Trace. We will test some more. 10,000 per day, by the end of the month. We miss that target. So we increase the target to 25,000. We miss that target, too. Early on, Johnson promises a “world-beating” Tracing App. Nothing materialises, world-beating or otherwise. But no matter, talk is cheap. But over the months, testing increases, quickly at first, but more slowly between May – September. The “second wave” has been promised since July.

Testing is being shown as woefully inadequate. “Nobody could have predicted the need”, says a Johnson supporter. “We predicted it in March”, say the WHO. But no matter, talk is cheap.

But it is worldwide. Peru’s president: we will defeat the virus. Echoes of Winston Churchill. I bet their public love them for it.

Now tell us how. Talk is cheap. India has a says it has a refreshingly low death rate. Because it isn’t counting them all. Talk is cheap.

Excursion

I went out for my first post-lockdown coffee yesterday. We went to the coffee shop, a friend and I, in a nearby village. I had not seen the friend since pre-lockdown.

Outdoors. Apart from having 10 or 15 people within 10 or 15 yards of me (nobody too close, not even my buddy), I figured that the risk was no greater than having friends come sit in the garden. It was even better for me, because I didn’t have to go into the shop to order – my friend did so. Although I suppose if he picked something up in there, he’d likely have breathed it in my general direction afterwards. We didn’t wear masks – we are only mandated to wear them here when we go into a shop.

So we followed the UK’s rules. I’m not too sure, how closely the UK’s rules match the science, so I wanted to be happy for myself. Before I agreed to meet him, I satisfied myself about the state of the virus locally. In the last available figures, week ending mid-July-ish, there were 11 deaths in our region. The week before that, there were 7. The week before that, 17. All in the same ballpark. Our region is the south west of the UK – probably 10-20,000 square miles? a big number. If you imagine dividing the UK into about 8, that’s us. And me and my space is, what, a square yard?

My friend… Well, my friend is an old cycling buddy. Up until corona, he was a director for a well-known, UK charity. In charge of all new development, nationally. At the very start of this, he figured that for the next few years, new development would be a thing of the past, so figured he was living on borrowed time. He’s roughly retirement age anyhow.

But they kept him on through lockdown, even though he was at home, and they only made him redundant last week.

We had a weird conversation, about my own mobility. As we both love cycling, he suggested an electric bike, or trike. I said that they were good ideas (I’ve thought about this a lot) but that the holy grail would be a new car, an automatic (uncommon in the UK). And with anything, I would not be prepared to spend any cash until I was bringing money in.

– will the state not buy you a car?

– You’re joking, aren’t you?

I told him that instead of receiving the thousands (GBP, USD, EUR, any currency you care to choose) to pay for a car, immediately after the stroke I was awarded GBP 10 per week because I could hardly walk. When the state assessed me a couple years ago, they decided I must be walking better by now, so reduced that portion to zero. I still get additional benefit because I can’t use my hand, but we’re in the same ballpark.

My friend knows somebody, apparently, up in Yorkshire, a long way from here, who has terminal cancer, and needs to travel around 20 miles (presumably a few times a week) for treatment. They are probably pretty rural, they probably have no public transport – outside of London, it is not good in the UK. Anyway, he says that the state awarded them a car.

I mean, if this is true, there are probably discrepancies between this other case and mine. I never really got any treatment once I left hospital, so there is no ongoing relationship between me and the health service.

But I thought it was interesting that even my friend, who as a charity bigwig will have seen hardship cases, believes that when something happens, the state will come to the rescue.

Anyway, I took a few photos yesterday, it was a lovely day.

Rushed

Used to be that I could go from undressed to out in about 20 minutes, including a shower and a shave, but I’m slower these days. After the stroke, it could take me easily over an hour, and now it is somewhere in between.

I’d had a conversation with my wife about going shopping today – I was tied up with my charity work this afternoon, so I said that if she went in the morning, I would go with her, but I had to stay home after lunch.

This morning, about 8AM, my wife came and said that she was going shopping at 9:30AM. So just to give myself as much time as possible, I stopped what I was doing and got into the shower. I was done and dressed in 30 minutes. I made the mistake of saying that I was dressed to my wife.

Thinking I had an hour before we went out, I set about uploading my blood sugar data from my glucometer to my computer. That’s a manual process, reading the numbers off the monitor and typing them into the program, plus I was behind a couple of weeks. Still, I had an hour…easily long enough. So I started copying numbers.

Unbeknown to me, however, my wife had got dressed (I bath at the start of the day, she at the end) and in fifteen minutes she was out waiting for me in the car. Needless to say, nowhere near enough time, so I had to abandon my task.

We got the shopping, and my plan was that when we got home, I’d take my meds and eat my breakfast – my insulin absolutely requires that I eat breakfast, lunch and supper. My wife had other ideas – she wanted me to join her doing some gardening when we got home. I had a window of just a couple of hours before I had to start calling clients, so was not best pleased. I ended up gardening and cutting my hand. With the meds I take after the stroke, cutting myself is not good news. One of them comes complete with a black skull-and-crossbones on the label, for exactly that reason. This bloody scratch took an hour before it stoppedcbleeding.

Tick tock. As it was, the gardening I got done was minimal, but I got my calls done okay. But one of the effects was that I didn’t take part in a couple of prompts today. Shit happens, and I’m wanting to scale back my posting anyway.

The calls complete, I went to the fridge to grab a snack. The fridge, of course, was full after our shop. And the thing I wanted was behind a couple of other things. Try doing this one-handed! I had to take things out of the fridge and find somewhere to put them, just as pre-cursors to getting what I wanted.

This happens a lot now. I can’t do this, because first I need to do that, I can’t do that because first I need to do the other, and so on. And I end up with this whole daisy chain. It really pisses me off that I have to do all these tasks, unrelated to the task I actually want to perform. I guess I’ve just been doing this my whole life and just coping, but now I notice.

Like today. I’m carrying all of this food, one-handed, but there are no surfaces available. So I have to put all these things back in the fridge, then find myself having to first clear a space. When I finally get to what I want, I then have to put everything back into the fridge!

I don’t normally write about my stroke effects these days, but I do get value from looking at posts from years ago to see how I’ve improved. Let’s hope that one day, this post will be one of them!

When I take part in prompts, by the way, one of the things I like is to read the posts of the other respondents. I mean, put a 1,000 word post in front of me, or a ramble, and I’ll pass, but mostly, I’ll at least attempt to read things. Taking part is not just a committment to write something, but a committment to a fair amount of reading, too, especially when some of the prompts I take part in can have forty other respondents. I suspect that’s just me, I don’t know if anyone else does this. But at least by not writing anything, I don’t feel so bad about not reading anything. I guess I’ll never know… Tonight was strictly an evening for chilling by the TV.

And relax…

Had a bit of a learning experience this evening. We’d had a bottle of wine on the side for months. I must have brought it in for some occasion, but we didn’t get around to drinking it.

For one, I used to be a wine buff, although I don’t drink much now. For two, we went on our honeymoon to the Corbières region of southern France (if you know your French geography, the Carcasonne area). On our honeymoon, we drank wine from the Chateau Grand Moulin (a moulin is a mill). Okay, in the grand scheme of things, there are more prestigious wines than from the Corbières region, but this wine was delicious. It was a red which my wife actually liked – she didn’t normally drink reds.

We enjoyed the area immensely, and a couple of year later we holidayed again in the region, for a full two weeks. I made a point of seeking out the chateau, met the patron, and we bought a case to bring home. Mixed – reds, whites, rosés. Over the years, we have chipped away at this wine, we’ve holidayed in other areas such as Bourgogne and Bordeaux, so have collected many wines, directly from the producers, over the years. But I must’ve brought a bottle of a 2002 rosé from the Grand Moulin into the house at some point to drink. Which never happened.

I finally got tired of looking at this bottle, so started chilling it a few days ago, and determined to start it, at least, with my evening meal this evening.

I’d never given it any thought before, but how the **** does someone open a bottle of wine, one-handed?

I dug out an old corkscrew:

but no, I could screw it in, but didn’t have a hope of pulling it out again. So, how was I going to have my glass of wine, since currently I am home alone?

After a bit of head scratching, I decided to root through another drawer, and after an exhaustive search, found a different type of corkscrew:

I still can’t operate it one-handed, but a hand and a chin does the job nicely.

Ah…delicious. But, the hoops I must jump through. Still, must be time for another glass…

Cast Off

Disabled is a funny old word. What exactly is disabled? Nuts and bolts? What’s the difference between disabled, and a bad arm, bad leg, depression, etc? Well, one measure is whether you’re in receipt of the relevant benefit, and the UK’s main disability benefit is called PIP, Personal Independence Payment. It’s a form of Newspeak. They cut people’s bus services, then tell them they’re independent. Go figure! But I must not get bogged down. In theory, parliament sets the rules, and they are implemented by the benefits agency, the DWP (Department of Work & Pensions).

At least, that’s the theory. When the DWP makes a decision, people often appeal that decision because they feel it is wrong. Almost 3/4 of these appeals are successful. As far as I can tell, if the DWP were implementing the rules properly, then that figure would be in the region of 0. Okay, it’s never going to be that low. Every case is a judgement call, so you’re bound to get some of them wrong.

And, believe it of not, I do support their aim. With any benefits system, disability, immigration, whatever, you’ve got to have some sort of test. A high jump, where if you jump over the crossbar, you qualify for the benefit, and if you don’t, it’s I’m sorry… Political parties will disagree exactly how high that crossbar should be, but they all agree that thee should be one. Otherwise you’re either giving the benefit to everyone or to no-one.

I was debating with somebody once about whereabouts that crossbar should be. Quite reasonably, she suggested that expert medical opinion should play a part. Quite often, they ignore medical opinion and…did I mention how many people appeal and win through?

But there’s the rub. I have only had one appointment with a doctor in almost four years since the stroke. Even that one appointment, three months after discharge, the main purpose was to tell me that I was on my own, that no further help was available. Further? I was left wondering what help I’d been given in the first place! It left me thinking that if I were a consultant, earning magebucks per year, it might really harm my job satisfaction to have a dozen years of healing experience under my belf, and to be stuck with telling people all the time that I couldn‘t, or rather, did not have the resources to, help them. If it weren’t for the fact that I was earning megabucks.

Of course, I have had contact with the NHS over that time. I take meds every day so need to restock those regularly, for starters. And I’m quite happy to get blood tests – I’ve learned myself what the results mean. And, bear in mind that my wife is a diabetic nurse. But as for visits to the local surgery, I try to keep those to a minimum. For one, I was on meds prescribed by these guys when I had the stroke, so how preventative was that? Okay, be reasonable, it might well have happened anyway. True, it might, but isn’t it suspicious that every one of my meds was changed while I was in hospital? Almost as though I was on the wrong meds to start with! Even since the stroke, I was told by a receptionist there that she wouldn’t help me to get some form printed off – at the time, getting to the surgery was just about my limit, so I was not best pleased that my journey had been fruitless. That particular episode resulted in a complaint, but I doubt I was taken seriously. So when wife asks me if I want to go to their Christmas party, it’s always a curt, No, thanks.

Taking medical advice on board is fine, but a lot of disabled people are cast off by the system, to sink or swim for themselves. They don’t see doctors for long periods – disabilities are generally long-term, so this could be years. And, they likely won’t have seen their hospital doctors since they were discharged.

Nice People

Story on TV this morning. An altercation in a car park. A dad parks in a Disabled space with his son. Dad is not disabled, but son is. Invisible disability, was it hypomobility? They display all the correct documentation to be in the space.

You don’t look disabled, wades in Mr BigMouth, to the father.

What the nice people did:

  • He tries to explain that they have used that particular space because of the son
  • He tries to explain that the son has a Blue Badge.
  • He tries to explain to the guy about the son’s disability
  • When the father gets home, he tweets about the incident.
  • It is subsequently picked up by media outlets, and the story broadcast, including on the Breakfast News. There are all sorts of spurious things brought into the debate – what is wrong with the child, that he also happens to be autistic (the public possibly (very possibly) has a vague understanding of autism, but not a clue about hypomobility) why that particular ailment warrants a Blue Badge, that there were other spaces in the car park, etc. etc.

What I’d have done:

  • F*** Off, you ignorant *******.

I’m sorry, but in such a situation I lose my normal, suave (????), mega-composed self. I’m not going to be nice here – people will afford me my rights with good grace, or I will simply take them anyway. Good grace is optional. By any means necessary. That somebody displays a Blue Badge is the only criterion required for them to use a Disabled space.

I had to jump through hoops (or rather, to show that I couldn’t jump through hoops 🙂) to qualify for my Disability Benefit. This boy will have had to do the same. Every recipient of the benefit has to do the same. We all have to prove that we get this benefit in order to qualify for a Blue Badge. If we then subsequently park the car in a Disabled Bay, then as long as we display the badge, it is nobody else’s business. I’ve done all the explaining I am required to do already.

I apologise for the rant. I expect that by posting on here I am already preaching to the converted, and I appreciate that things might not have happened exactly the way the Dad recounted. But this post might one day be found by search engines.

Have I Got News For You

Well, no, actually, because I’ve stopped watching the UK political satire show Have I Got News For You.

It happened a few weeks ago, I wanted to let the dust settle, but still feel as strongly now.

The incident which precipitated my decision happened online, rather than on tv. They posted a photograph of the Tory leadership debate. At the time, Sajid Javid was one of the contenders. The photograph showed him sitting awkwardly on his stool. The caption read along the lines, “And you trust him to run the country?”

Here, I make the leap that running the country requires a degree of intelligence. It is a leap of faith, I know. But the point of the joke was to imply that somebody with this physical “foible” (beforehand, I never even knew there was a proper way to sit on a stool) he was unfit to do this intellectual task.

I’m afraid I thought of all the disabled people who have been told they are not fit to do a job because of their disability. Of all the black people who’ve been discriminated against, simply because of the colour of their skin. That they are disqualified from something, for reasons totally unrelated. That it is dressed up as satire does not make it right. This is real life, not satire. Past and present tense. These words harm real people.

So, I said something.

You should have seen the hatefulness of the responses! Because Javid wasn’t disabled, attacking his physical characteristics was ok. Even if they were unrelated. (I have no idea whether Javid has some kind of disability or not, if he does, he certainly doesn’t disclose it, but he might quite reasonably hold the view that it is nobody else’s business).

Even that for finding this not-at-all-funny, I was an example of everything that was wrong with the country. I wonder how much charity work that guy did? how many people he helped each week? (Actually, I knw the answers to these without even asking, since nobody who does voluntary work would describe someone in such a way.) The comments reminded me, I’m afraid to say, of people who joyfully laughed at nig-nogs on Seventies UK TV, until society told them it was wrong. Wrong is wrong, something might be commonly acceptable, but that doesn’t make it right.

There is another point, here. At what point does fun (satire, say. Sport is also a good example, I’m old enough to remember when we’d never play with the South Africans) stop, and you take the matter more seriously? I leave that one for you to ponder.