davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)


The other day I received a letter letting me know that Kent and Medway Wheelchair Services is being privatised (they were worried about this happening when I went through the system last summer). Now in theory it shouldn't make any difference to the service I receive, but, as I noted on Twitter, it does mean someone now expects to make a profit out of my needs/my wheels.

Today the new franchise holder followed my twitter account. Now admittedly it's a new account, but they're following a grand total of 7 accounts, only two of which are individuals, and the other one is Tanni, aka Baroness Tanni Grey-Thomson, parliamentarian, multiple paralympian and the most famous wheelie in the country.

The scary thing is I didn't mention where I lived. They must have pulled it out of the #wheelchair stream from a week ago, figured out I was talking about them and made a note to follow me once their account was up.

Of course that's not remotely likely to intimidate someone from freely discussing the service they depend on.

Nope, not one bit.

(Well, not if you know me, but other people...)

davidgillon: Text: I really don't think you should put your hand inside the manticore, you don't know where it's been. (Don't put your hand inside the manticore)


If you're going to post something marked 'Urgent, please do not ignore' through a letterbox, maybe spend 5 seconds to make sure you have the right house?

And they weren't even close, I live at 41, the letter was addressed to number 49, which is literally the first house in the street...

I just tottered down the road in the freezing rain to put it in the right letterbox. (So of course the rain has now stopped).

*I know it was hand delivered, because a) no stamp and b) I heard them knock and them put it in the letterbox about 6PM last night, but given at that point I'd already gone to bed because of the whole sinus bug thing and was asleep not long after I wasn't about to get up to answer the door and didn't actually see it until this morning.

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
... is me beating my head against a brick wall in response to this tweet from Penny Mordaunt MP, Minister of State for Disabled People:




Yep, that's the Minister of State for Disabled People celebrating World Downs Syndrome Day by saying how 'inspiring' it is that a young woman with Downs Syndrome actually has a job. Disabilityconfident she isn't.

I may have been inspired to a rant about the objectification of disabled people as 'inspiring'.


davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

AKA I came down with another inner ear bug over the weekend. Fairly mild, I'm just very slightly dizzy when I move around, but annoying as I've a few errands I want to run now there's hints of spring in the weather and there's no way I could safely drive. I think I've had one bug or another more than I've been bug free this year, and that may well be true as far back as last September, which is getting boring.

So I mostly spent Monday dozing in bed, which seems to have helped, and there was an interesting sequential dream to keep me amused. 'Sequential' as I woke up several times during it, but the dream picked up once I'd dozed off again.

Slightly futuristic setting, the characters were the high command of Singapore's space navy (?!) until an attack with a WMD took out the top man, at which point his deputy has to take over, said deputy being something of a joke and alleged former crook. Unfortunately for the bad guys he's also Bruce Willis. So cue thorough reprisals, both individually against those who plotted the attack and collectively against them as a nation - I never did work out who the bad guys were, but my subconscious is saying South American. Some of the reprisals were slightly Cthulhu-esque, probably a result of the Laundry Files re-read I've been doing. It's interesting the places my dream-director chooses to go.

Hopefully I'll be over this buf soon, but if not I'll settle for a few good dreams.

davidgillon: Text: You can take a heroic last stand against the forces of darkness. Or you can not die. It's entirely up to you" (Heroic Last Stand)

AKA Life with Dyspraxia.

Stumbling half awake across the living room and kick over a glass left from last night (it was at least on a tray, though if I'd been too lazy to put it on the tray it would likely have been somewhere I wouldn't kick it over - no deed of voluntary housework goes unpunished).

Glass lands roughly where my foot was meant to be coming down, I'm left standing on one leg, the dodgier, wobblier left one, with my foot dangling in mid air while trying to work out where the hell do I put my foot that isn't 1) on top of the glass (pint pot, not likely to end well) or 2) the tray (also not likely to end well).

In trying not to lose my balance, I end up throwing myself headlong across the arm of the sofa and onto the floor beyond, fortunately avoiding the wall beyond that (which I'm still not sure how I achieved, it took a 45 degree change of direction in mid-air).

I escaped with a sore knee, but let's hope that's not an indication of how the rest of the day is going to go.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

The title is what I was called on Twitter yesterday by Times columnist Libby Purves for challenging her article supporting the one by Rosa Monckton in The Spectator advocating that disabled people be paid less than the minimum wage (she's specifically talking about people with severe Learning Disabilities but seeing as a) LDs are a spectrum and b) you're setting a legal precedent the issue is much wider). Purves' article was shocking in its savagery, lashing out at anyone who refused to support Monckton and who argued disabled people are worth an equal wage. She's the only person I've ever seen defend that Tory social neanderthal Philip Davies MP, who even other Tories think is beyond the pale. The one thing missing from Purves' article, any opinion from a disabled person...

As for Rosa Monckton, the fawning over 'friend of Princess Diana' by the BBC was stomach-churning. Perhaps more relevantly, she's the Honorable Rosa, daughter of a Viscount* and married to Dominic Lawson, who is the son of Thatcher's Chancellor, Dominic Lawson, and former editor of both The Spectator and the Sunday Torygraph. She does have a reason to be talking about this, a daughter with Downs Syndrome, so that's her own daughter she's arguing is worth less. But someone whose Twitter profile claims "Champagne is the answer" and is the former chief exec of Tiffanys, never mind the family connections, is arguing from a position of significant privilege**

The argument has been very heavy on the 'we're parents, we have to advocate for our children, we know what's best', which they might have a better chance of carrying off if they weren't trying to shut down disabled people attempting to comment, and apparently completely ignorant that there are a lot of very eloquent LD self-advocates, never mind the whole history of parents campaigning for what they want and not what we want that's wrapped up in the Autism Speaks/Actually Autistic campaigns.

So I've been thinking about this view that we should be paid less than the minimum wage, and I think it comes down to a conflation of two separate problems:

First the idea that disabled people aren't as able, which is an aspect of workplace disability discrimination (and wider social discrimination). This is grows out of the (illegal) demand we all be identical cogs in the production machine. It's based on a presumption of incompetence and defending the right of employers to that view.

The second is a presumption that worth and dignity can only proceed from having a job - that's clearly visible in Monckton's piece. It's probably not entirely coincidental that this has come out in the wake of the Green Paper on Work and Health which preaches a similar view. The reality of disability is many disabled people can't hold down a job. Whether you're averbal, or can argue eloquently is irrelevant. Our worth isn't defined by holding down a job, our worth is equal whether we do or we don't, whether we can or we can't. Society fails disabled ppl when it devalues us over our employment status. And that's what the pay less than minimum wage argument does.

Worth determined by job? An identical cog in the machine? Disabled people worth less? A refusal to challenge workplace disability discrimination?

We've misread the whole discussion.These aren't the views of concerned parents. they're the views of hardline Tories.

*A friend just pointed out her brother, the current Viscount Monckton, was sacked as vice president of UKIP and has views on gay rights so extreme even UKIP would be embarrassed.

** I wouldn't normally make a point based on class privilege, but in this case I think it's central to the discussion - Monckton can afford for her daughter to be paid less, that's not necessarily true of families or individual disabled people in more straitened circumstances.

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Or day and a bit.

I've really not been out of the house much this year, one bug after another and winter weather, etc, so yesterday afternoon I decided I really needed to pop out, at least to the supermarket. So I got myself ready, got the chair into the car, buckled up, turned the ignition, and the car went "wwwrrrrr".

Flat battery, enough power to work the dashboard, not enough to work the starter. I guess I really haven't been using it. It was getting dark at that point, so I left it for today.

Just to add to the fun, I woke up this morning with neckache. My neck is a lot better than it used to be*, but  I'm having a day where I can't decide whether I'm happier with a collar on, or off, which is a real pain in the neck. The pain levels aren't actually that high, but come with associated nausea and a slight light-headed feeling, which isn't my favourite thing.

I missed my chance to snag my neighbour and ask for a jump start, so I had to go for my battery charger, which has a solid record of charging my battery - it's never worked yet. I don't think it has the oomph to charge an actually discharged battery. So picture me fiddling about under the bonnet, while wearing a collar and unable to look down properly. Also picture me confirming 4 hours later the battery charger has kept up its record. I'll see if I can catch my neighbor tomorrow, if not I'll have to dig around and find the contact details for whoever my homestart is with this year.

And to add to the fun I remembered to go out and check whether there was any damage from this week's storms - something was making a disturbingly metallic screeching noise while the wind was blowing. So picture me trying to look at the roof of the house while wearing a hard collar - just as well I have a long garden. The roof of the house is, thankfully, fine. Then I looked down.

The roof of the shed, not so much. Fortunately it's just the tarpaper that's ripped and flapping loose, the wooden roof is intact, but it will still need replacing properly at some point. For now, picture me wearing a hard collar, tacking down a rip that's a foot above my head and as far away as I can reach.

I have a bottle of wine, and I think I'm fully entitled to use it.

* I wore a hard collar 23/7 for pretty much a decade. The root problem was probably a C5/6 disc prolapse, but it just wouldnt get better, As far as I can tell the problem was the way I limped putting lateral stresses on my neck, it finally went away spontaneously when I started using crutches and my limp smoothed out.


davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I know there are several people here who are quite into gaming in various forms, so it's probably worth passing on a fascinating website I just came across (and save myself a link to it at the same time).

PaxSims is run by Rex Brynen, professor of political science at McGill University. His focus is "the development and effective use of games and simulation-based learning concerning issues of conflict, peacebuilding, and development in fragile and conflict-affected states" So you get lots of stuff trying to simulate the intersection of politics, military affairs and humanitarian crises. There's at least one complete game available under the Aftershock link, but it's the reviews I've been finding fascinating, as there are more games in the sector than I'd imagined, ranging from the serious military simulations with added politics (Persian Incursion - Israel tries to take out the Iranian nuclear programme, incidentally the link that brought me here), to slightly more balanced mixes with BCT Command Kandahar, to much more political/resource management focussed with Afghan Provincial Reconstruction. Even better, the reviews are mostly based on having played them, in some cases with his students, and analysing what worked and what didn't, rather than simply having skimmed through the rules.

There's also reviews of books on wargame and game design, which I'm pretty certain [personal profile] yhlee  will find interesting, and a ton of links to related sites
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

Beyond my part in the Spartacus Network response to the Work and Health Green Paper, I wanted to do a personal response as I take a slightly different view of the Disability Employment Gap that Work and Health is supposed to challenge and think it's much more to do with employer/recruiter disability discrimination and tacit government acceptance of the same/reluctance to display employers in a bad light.

I'd set today aside to do that, as submissions have to be in before 11:45PM (and dyspraxic, so bad with deadlines and planning), so of course today was the day I crashed and burned and slept all day because of cumulative fatigue.

The consultation had 46 questions, I managed to answer about 30 of them between waking up and remembering and 11:30PM rolling around which was when I pressed submit (just in time, it wasn't exactly quick to respond).

Which means I couldn't thoroughly respond to Work and Health because it was too much work for my health....

*headdesk* *headdesk* *headdesk*
 


 

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
The multiply-transatlantic parcel finally arrived this morning, the alarums and excursions around it claiming to be delivered last week were due to it being held up with a customs fee - VAT to pay - which I finally got a card telling me needed paying on Tuesday.  I wouldn't have minded the VAT too much if the Royal Mail's handling fee hadn't practically doubled it.

I may have been slighty more wound up about it than I realised as I'd no sooner glanced through the contents and confirmed everything was there* than my body decided I was going to sleep. Now. By my reckoning I'd already had 6 to 7 hours, and my body decided to double that.**

So it's 8PM and I just had breakfast....

I haven't been sleeping particularly well since early January when I came down with that blasted cold, I seem to have been on more of a 30 hour, or 36 hour, cycle than a 24, which keeps you functional, but in a state of permanently too knackered to do anything constructive, not to mention awake at awkward times of the day and it looks like it may finally have caught up with me. Hopefully I can get back to something resembling normalcy now.

* Except for the stuff that went permanently out of stock in the near year it took the main item to finally be published,

** Complete with two*** dreams about starting a PhD back at Lancaster and having a pleasant conversation with the fiercest of my old lecturers. There are also vague memories of being signed up as an officer for World War Three (and Case Nightmare Green from the Laundry Files), but that's down to the reading I've been doing. All of them surprisingly domestic, rather than kinetic.

*** Or one dream, interrupted, as I woke up in the middle of it, checked the time and picked up the narrative again when I fell back to sleep.


 

 


davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

The new Spartacus report, Smokescreen, into the government's Green Paper on Work and Health, is out. I'm listed as a co-author as it incorporates my 'Ticked Off' dissection of Disability Confident, but didn't actually do any work on the main report - which is a monumental, spectacular effort by Caroline Richardson and Stef Benstead.

TLDR: The government want us to see disabled people as the problem in disabled people being unable to work, rather than challenge employers as the actual cause of the Disability Employment Gap.

Executive summary of Work and Health: The beatings will continue until disability employment improves. *Headdesk*
davidgillon: Text: I really don't think you should put your hand inside the manticore, you don't know where it's been. (Don't put your hand inside the manticore)

Just checked the status again. Since our last episode:

 

Date & Time
 
Status of Item
Location

February 10, 2017 , 10:52 am

Delivered

UNITED KINGDOM

 

Your item was delivered in UNITED KINGDOM at 10:52 am on February 10, 2017.

February 9, 2017 , 7:14 pm

Processed Through Facility

UNITED KINGDOM

February 9, 2017 , 12:52 pm

Processed Through Facility

UNITED KINGDOM

February 7, 2017 , 6:24 am

Departed

LONDON, UNITED KINGDOM

I was in the house all day yesterday. I actually took delivery of a parcel for a neighbour just after 11AM. But I certainly didn't take delivery of a parcel just before 11AM, or at any other time.

Seriously unimpressed and will be letting USPS know that.

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

Pretty good article on what Obamacare did for US bendies, and what taking it away might mean. The cost for those with vEDS doesn't bear thinking about.

And what goes for EDS applies to every other chronic illness that previously caused people to miss out on insurance cover.

Because god forbid an insurance company might not make a profit on every single patient.

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Date & Time
 
Status of Item
Location

February 7, 2017 , 6:24 am

Departed

LONDON, UNITED KINGDOM

 

Your item departed a transfer airport in HEATHROW, LONDON, UNITED KINGDOM on February 7, 2017 at 6:24 am. The item is currently in transit to the destination.

February 6, 2017 , 5:11 pm

Departed

MIAMI, UNITED STATES

February 5, 2017 , 3:23 pm

Departed

LONDON, UNITED KINGDOM

February 5, 2017 , 10:22 am

Departed

PHILADELPHIA, UNITED STATES

February 1, 2017 , 10:58 pm

Departed

PARIS, FRANCE

January 31, 2017 , 4:17 pm

Departed

WINDSOR LOCKS, UNITED STATES


So do I stay in on the chance it's going to arrive today, or assume it's crossing the Atlantic, again.

And can I claim its frequent flier miles?

WTF USPS?

Feb. 7th, 2017 12:36 am
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I'm expecting a parcel from the States, which I've been tracking using the USPS website. All I can say is I understand now why transatlantic shipping is so costly.....

February 6, 2017 , 5:11 pm

 

Departed

MIAMI, UNITED STATES

 

Your item departed a transfer airport in INTERNATIONAL, MIAMI, UNITED STATES on February 6, 2017 at 5:11 pm. The item is currently in transit to the destination.

February 5, 2017 , 3:23 pm

Departed

LONDON, UNITED KINGDOM

February 5, 2017 , 10:22 am

Departed

PHILADELPHIA, UNITED STATES

February 1, 2017 , 10:58 pm

Departed

PARIS, FRANCE

January 31, 2017 , 4:17 pm

Departed

WINDSOR LOCKS, UNITED STATES

January 31, 2017 , 4:16 pm

Departed

LOUISVILLE, UNITED STATES

January 31, 2017 , 3:11 am

Arrived

LOUISVILLE, UNITED STATES

January 30, 2017 , 9:49 pm

Departed

WEST PALM BEACH, UNITED STATES

January 30, 2017 , 9:49 pm

Departed

LOUISVILLE, UNITED STATES

January 30, 2017 , 8:25 pm

Departed

WEST PALM BEACH, UNITED STATES

January 30, 2017 , 5:10 pm

Arrived

MIAMI, UNITED STATES

January 30, 2017 , 4:31 pm

Processed Through Facility

ISC MIAMI FL (USPS) 

January 30, 2017 , 6:22 am

Arrived at USPS Facility

MIAMI, FL 33112 

January 30, 2017 , 6:22 am

Arrived at Facility

ISC MIAMI FL (USPS) 

January 27, 2017 , 9:50 pm

Arrived at USPS Facility

BIRMINGHAM, AL 35222 

January 27, 2017 , 8:35 pm

Accepted at USPS Origin Facility

BIRMINGHAM, AL 35210 



davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

I've had a headache every day for the last fortnight, it's not constant, but every afternoon or evening, there it is again. It's not migraine level, but intense enough to be wearing.

My initial thought was it was part of my cold, which seemed to be staging a last stand in my sinuses, but I'm not really getting a lot of other cold symptoms anymore, so I've started thinking that may not necessarily be the case.

An obvious possibility is my new glasses - I switched to varifocals just under a month ago, or a combination of new glasses plus posture - the varifocals are inevitably going to change my ergonomics when I'm reading in a reclined position, particularly precise head/neck posture. The third option would be something otherwise c-spine-ish. I'm not aware of having done anything to my neck, but I've a history of neck issues suddenly popping up without warning, and sleeping with a collar on the other night seemed to help a little, but not enough to be entirely sure.

So I'm going to have to spend a few days experimenting with different combinations of things to see if they make a difference, starting with going back to my old glasses for a day or two.

Bah, this is a headache....
 

 


 

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Crutches)

I did a quiz night with friends on Saturday (which we won, he says smugly) and there was one moment of humour that's worth repeating.

Questionmaster: "What is the largest species of lizard?"

Instant voice from the back: "Trump!"

The table across from us was particularly raucous - they turned up with takeaways and a bottle of gin - and only got louder as the night went on and the level of gin went down. That prompted one of my friends who knew them to note that mass would be interesting in the morning - apparently the two being noisiest were the cathedral's Director of Music and the organist.

There were a couple of answers I was dubious enough about to check up when I got home, and it turns out I was wrong to say John Wayne played the lead in Genghis Khan, it was Omar Sharif. But I wasn't wrong by much, he played Genghis Khan in The Conqueror. And I guessed right that they'd go with Copernicus as the first person to propose the heliocentric hypothesis, but I was right to think it was Aristarchus of Samos, who only beat him by 18 centuries (admittedly I couldn't remember the 'of Samos'). One of my friends was particularly upset that she couldn't remember the name of the Welsh Assembly's First Minister, because 'I'll get teased about it at work' - it wouldn't be an issue for most of us, but she works in the Constitutional Affairs team at the Cabinet Office. Whoops....

It's about a year since I last did a quiz, we used to do them much more regularly. The only drawback to this one was that there were really too many people in too small a space, which made conversation difficult to impossible, but still an enjoyable night.

davidgillon: Text: I really don't think you should put your hand inside the manticore, you don't know where it's been. (Don't put your hand inside the manticore)

I finally caught up on the missed sleep that had turned Friday into a stumbling disaster by sleeping through most of Saturday.

But I couldn't work out why I felt so feverish when I finally woke up Saturday evening, I'd thought my cold was long past that stage and my whole head just felt unpleasantly warm.

I didn't realise what was actually going on until the wee small hours of Sunday morning, at which point I promptly face-palmed myself.

I was supposed to have changed my butrans patch on Friday. I'd just spent 12 hours in opiate withdrawal because I was too stupid to realise I was in opiate withdrawal.

Fortunately it was easily enough fixed once I'd had a new patch on for a few hours, but I really hope this coming week is better than the last one!

 

davidgillon: Text: You can take a heroic last stand against the forces of darkness. Or you can not die. It's entirely up to you" (Heroic Last Stand)

That annoying thing when you wake up pre-dawn and two hours later it's still pre-dawn and you realise you're 12 hours out.

And then two hours later realise it's not the day you thought it was either.

I had to check the modification date on a file I knew I saved earlier to confirm I haven't entirely missed Friday, which means I was so tired Thursday and Friday have merged together in my head. I can vaguely remember thinking I must check Friday's webcomics, which is more confirmation, but I don't think I managed to actually do that. It also explains why there was one less helping of soup in the fridge than I expected at lunchtime.

I can sort of piece it together, Thurday night's sleep was more two or three hours trying to doze followed by eventually giving up and going downstairs, rather than actual sleep, but that led to a crash-dive onto the couch sometime late-afternoon, and staggering to bed sometime after dark. When I woke up and the alarm said 6:30 I definitely thought that was AM, not PM, so at this point I'm really, really glad I rolled over and slept another hour.

But that still means I may only have had 4 hours sleep in the last 56(?) hours.

I'm not sure I'll manage to get back into a proper sleeping rhythm, and at this point I'd even settle for nocturnally awake, until I'm rid of this damned cold, which is clinging on by the claws in the back of my throat and proving annoyingly difficult to get rid of. It's really not much more than sniffles and a cough, but just enough to disturb you as you drift towards sleep.

Meh!!!
 

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