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Peeling petals

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Gazing down the final straight towards w-day.

I was a bit panicky over the bank holidays - not about the getting married bit, just about the co-ordinating the wedding bit. I don't think the fuss and drama around the Royal wedding helped at all. I mean, on the one hand, I don't have to try and decorate the entirety of Westminster Abbey with actual real-life still-growing trees, on the other hand, I would love to have access to start decorating the venue a week beforehand and a couple of dozen helpers in hi-viz jackets.

Anyway. Since then, we've settled a lot of the accounts that we had so far only paid deposits on, and we've checked and re-checked the budget to make sure that we definitely have all the money we need for the few on-the-day costs, and having that all sorted out makes both of us feel a lot better. Wedding Zen is returning, and the to-do list is down to chasing the last handful of RSVPs and finishing off a few details.

One of these details is the petals. I had this absolutely terrific idea that a few petals might be a nice finishing touch to the room decoration. There are four options for this:

  • Real petals, fresh, ripped off the heads of actual flowers shortly before the ceremony begins. This option was rejected because no one's going to want to dirty their wedding clothes by ripping up flowers that morning, and also the venue might get unhappy about juicy fresh vegetation getting crushed underfoot and then being left to rot.

  • Real petals, dried, basically pot pourri. This option was rejected because they look manky.

  • Fake petals, fabric. Wild variations in quality and quite expensive. There was also the consideration that the petals may get blown outdoors and the venue have asked us to be sure to only use biodegradable confetti.

  • Fake petals, paper. Again, wild variations in quality, but biodegradable and also a bit cheaper than fabric.


All things considered, I decided to go with paper petals. I ordered them from eBay - about £10 for about 1,000 of them. They're lovely - the colours are pretty, the quality is terrific, they're proper three-dimensional petal shapes, it's exactly the look I wanted.

The only thing I didn't realise, and I'm posting this as a warning to other brides, is that paper petals... well, I'm not sure if it's how they're dyed or how they're cut or shaped or packaged or stored, but the fact is that the fibres are ever so slightly stuck together. It's like when you spill a drink on a book, and then when it dries, the fibres of the pages are slightly stuck. You can pull them apart quite easily, but it also has to be done with care to avoid tearing, and one page at a time.

Or in this case, one petal at a time.

1,000 of the damn things. The box is full of little bags, and each little bag has five compressed stacks of about 80 petals each.

What makes it even more fun is that, once separated, 160 petals is more than enough to completely fill a 2.6l tupperware box. Can't squash them down, that would defeat the object of having bought these nice three-dimensional-shape petals. So they have to be reassembled into stacks, uniform enough to minimise storage space, but also loose enough to ensure that the paper fibres don't meld again.

I'm about three-quarters of the way through, but it is taking FOREVER.

Oops

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Should have seen this one coming, really.

For several years now I've been considered by Social Services to need help in the mornings, to get properly and safely washed, dressed, medicated and generally ready to face the day. We only took it up a few months ago (whole other story), and it has been working well and has made a very welcome difference to my life.

This morning my assistant arrived and rang the doorbell - some people have key safes but since I can usually get to the door one way or the other, we've chosen not to have one. Normally that's fine, but today, the Roomba was running. I did not hear the doorbell. I did not hear the doorbell again. I did not hear the knock on the door or the call through the letterbox. The blinds were all shut (unsurprisingly as I was not yet dressed). The poor woman ended up basically running around the house knocking on all the windows with increasing panic. Eventually she reached the one by which I was sitting, but by the time I'd levered myself up to crack the blinds and see who was knocking, she'd already run back round to the front of the house and was about to call base and ask them to ring me... she was extremely relieved when I opened the door.

We've decided that while the Roomba is a wonderful thing, it's best not run when I'm expecting my care calls.

Guestbook

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The wedding looms ever closer. The craft-project chaos of my lounge is gradually turning into stacks of boxes with neat little contents-lists stuck to them, Evilstevie has confirmed his time off work, and really, everything's on track.

I keep telling myself, and anyone who has a tizzy at me, that the venue is booked and paid for, the registrar is booked and paid for, and we have the rings - therefore a wedding will take place. Everything else is fluff.

But fluff is fun, and today's fluff is the guestbook.

The guestbook isn't really a book. We're doing it in the form of lots of luggage labels, which our guests can write on or otherwise decorate as they see fit, and pin to a line at the reception.

I'd quite like to pre-populate the line, to get the ball rolling. So here's my idea. If any blog readers who aren't coming to the wedding would like to add a message to our wedding guestbook, then pop it in the comments, or email me, and I will be able to print it out and stick it to a label.

I know to new readers this may sound a bit "internet! validate me!" - no. If you don't feel you know us, or you've nothing to say, then there's no need to say anything. It just felt a little bit strange not to include the online side of our lives in our wedding day.

Wedding Ceremony

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Evilstevie and I were married at noon on Saturday, 21 May, 2011.

The day was everything we wanted it to be. Our friends and families all made a big effort to ensure that the day was as relaxed and happy as it could possibly be.

I don't have any pictures yet. There are about 700 pictures on Evilstevie's camera but we haven't had a chance to go through them! The lovely Carie has put up a few of her shots which can be seen on her blogpost here (I'm afraid I can't link them as images).

What we do have, though, is the text of our vows. Evilstevie had gone to a lot of trouble setting up our home server to tweet the vows at the appropriate time (much like he did for the engagement proposal). Unfortunately, this was thwarted by our plan of having our Wii set up at the reception - on the morning of the wedding, in the hurry of extracting the TV, Wii, and associated cables from the heap of tech in the corner of our lounge, the cable connecting the server to the internet got dislodged, and although the script fired as planned, it had nowhere to fire to.

So, for internet friends, here are our wedding vows, and the reading a friend did afterwards. If you want the music as well, here's a YouTube link for my entrance music - Reunion by John Williams, from the AI: Artificial Intelligence soundtrack.

Evilstevie: I give you this ring as a sign of our marriage and a symbol of our love. I will always be there for you, to comfort and support you, and share in the joy and happiness of our love.
Cherish my faithfulness, my loyalty, and my trust, they are yours forever.

Mary: I give you this ring as a sign of our marriage and a symbol of our love. As we face the future together, I promise to be a companion worthy of your friendship. I promise to support your hopes, dreams, and goals. I vow to be there for you always.
When you fall, I will catch you.
When you cry, I will comfort you.
When you laugh, I will share your joy.
On this day, together with our friends and families, we can cherish the memories of our individual pasts, and create new ones, as, through our union, we accomplish more than we could alone.

Reading:A Lovely Love Story by Edward Monckton

The fierce Dinosaur was trapped inside his cage of ice. Although it was cold he was happy in there. It was, after all, HIS cage.
Then along came the Lovely Other Dinosaur.
The Lovely Other Dinosaur melted the Dinosaur's cage with kind words and loving thoughts.

'I like this Dinosaur,' thought the Lovely Other Dinosaur. 'Although he is fierce he is also tender and he is funny. He is also quite clever though I will not tell him this for now.'
'I like this Lovely Other Dinosaur,' thought the Dinosaur. 'She is beautiful and she is different and she smells so nice. She is also a free spirit which is a quality I much admire in a dinosaur.'

'But he can be so distant and so peculiar at times,' thought the Lovely Other Dinosaur. 'He is also overly fond of Things. Are all Dinosaurs so overly fond of Things?'
'But her mind skips from here to there so quickly,' thought the Dinosaur. 'She is also uncommonly keen on Shopping. Are all Lovely Other Dinosaurs so uncommonly keen on Shopping?'

'I will forgive his peculiarity and his concern for Things,' thought the Lovely Other Dinosaur. 'For they are part of what makes him a richly charactered individual.'
'I will forgive her skipping mind and her fondness for Shopping,' thought the Dinosaur. 'For she fills our life with beautiful thought and wonderful surprises. Besides, I am not unkeen on shopping either.'

Now the Dinosaur and the Lovely Other Dinosaur are old. Look at them.
Together they stand on the hill telling each other stories and feeling the warmth of the sun on their backs.
And that, my friends, is how it is with love. Let us all be Dinosaurs and Lovely Other Dinosaurs together.
For the sun is warm. And the world is a beautiful place.

Wedding: the party

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This is me and Evilstevie enjoying our first hours of married life:
Married!

After the ceremony described in my previous post, we bundled into a car with our Official Photographer (Steve's cousin) and went to a more scenic part of the venue to take some nice, couple-y photos. I'd recommend this to anybody. It allowed us to have some time to just cuddle each other and marvel at the fact that we were actually married, rather than having to dive straight in to a busy mishmash of family politics and being congratulated for a ceremony we were still getting our heads around.

This took maybe half an hour or so, and then we headed over for the reception. I had decided ahead of time that I would walk for the ceremony but use the chair for the reception, and I think this was a good idea. Our reception room was advertised as accommodating up to 160 people. Our guest list was about 80 and about 75 came. It did look a little bit sparsely populated - especially as the summery weather saw a lot of people hanging around the outdoor areas - but it also meant that I had plenty of room for manoeuvring the chair, that parents didn't have to worry about where to put buggies, that strangers weren't sitting more or less on top of each other - all of which are good things. If I was doing it again, which I don't intend to do, and if I had a free choice of room sizes that met my other requirements, then I'd probably go for something nearer the "seats 120" capacity for an 80-person guest list.

The reception was going well when we arrived. Rather than a disco drowning out all hope of civilised conversation, we'd opted for quiet chill-out jazz and this worked really well.

We'd invited all the kids (mostly little boys between 2 and 10) to come dressed as pirates. The idea was that this way their parents wouldn't have to fork out for uncomfortable suits that would be ripped and outgrown within minutes. We'd hired a bouncy castle shaped like a pirate ship, complete with giant purple octopus overhanging the prow.
purple octopus
We also had heaps of chocolate coins/pirate treasure on every table, in lieu of favours...
treasure
... and our cake table had several chocolate pirates on the beach, alongside their enormous treasure chest.
Cake table

We did have our Wii set up in one corner to entertain the kids in case of bad weather, or if the bouncy castle was too full. It was set to just scroll through a slideshow in the meanwhile. None of the kids even noticed it.

Lunch was an assortment of sandwiches, and scones with cream and jam. The venue caterers served these in large dishes to each table, a happy medium between the awkwardness of a buffet and the unwanted formality of a plated meal and seating plan. Obviously at this point Steve and I were both making our way around the tables, with the tragic result that I had to eat two scones. Just to be polite, obviously.

You can't put helium balloons and engineers in a room together without there being an effort to get something floating. At our wedding, this was one of the pirate ship table decorations...
The balloon ship
... shortly followed by the Stunt Bride And Groom.
Floating Stunt Bride And Groom

We only had one Stunt Bride and Groom which we really didn't want to lose, but we had plenty of table decorations. With this in mind, when a certain young lady begged for permission to take the floating pirate ship out and launch it... well obviously it's irresponsible and we couldn't endorse it, but we felt equally unable to say no. And it did look beautiful drifting off into the dusk.
launch successful

Technically the bouncy castle was for children only, although at one point Evilstevie and I did, erm, pose on it for wedding portraits that may have had a slight bouncing element.

By the evening some people had left and others had changed into more comfortable, less formal clothes. At Jiva's suggestion, I too had a less formal outfit of black trousers and a white top to get changed into for the evening. This was another one of the Really Good Ideas. My dress wasn't uncomfortable to wear or difficult to manage as wedding dresses go, but it was more effort than my normal clothes and I was starting to get really quite tired. Also, dinner was bangers and mash with vegetables and gravy. Getting changed was definitely a good way forwards.

The bangers and mash had another effect we hadn't predicted. All those little pirates, who'd spent the day hopped up on sugar enjoying sunshine, a big grassy area to play on, and an unlimited-access bouncy castle, suddenly had bellies full of a nice solid hot dinner, and very nearly fell asleep on the spot. It was magic.

The last guests left a little while after 9pm. By that point I wasn't making sense any more, but I was very happy and had enjoyed the most wonderful day.

Wedding: the Aftermath

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There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:
  • I do something active.

  • I feel tired, often rather more tired than the activity warrants.

  • I have a rest.

  • I feel, not 100% better, but significantly improved.

  • I carry on with my life.

  • ... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.


The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.

First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.

We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.

My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.

That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.

One month on and things that are done include:
  • We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.

  • We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.

  • I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.

  • We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.

  • We've had some of the photos back and have been able to print ourselves some copies to show people.

  • We've given or posted all of the thank you notes.


We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.

I also need to do another blogpost or two about some of our vendors who really were exceptionally good.

Wedding Venue: Stoneleigh Park

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Apart from the date and the dress, the other big thing I didn't want to broadcast online until after the wedding was the venue.

In England, you can get married in a church, in a register office, or (since the 1990s) in "approved premises". Since neither I nor Steve have any religious beliefs, it would be disrespectful of us to get married in a church, not to mention meaningless. And there's no parking - not even blue badge parking - at the register office's "Ceremony Rooms", so approved premises it was. This has the other big advantage that you can have the ceremony and reception in the same place.

We had already decided that I would use my chair for as much of the day as possible, and of course there's always the chance that guests may have their own access requirements, so accessibility was important to us. I regret to say that most of the venues in our area either admitted outright that they could not provide proper wheelchair access, or simply didn't bother to respond to my queries. This took us from the choice of fifty-odd venues that a non-disabled bride would have, to a choice of about half a dozen.

Stoneleigh Park, also known as the National Agriculture Centre, is an absolutely unique venue. They've got all sorts of on-site facilities (4x4 offroading? Segways? Helicopter landing pads?) and different styles and sizes of room. Access, while far from perfect, is much better than at many of the other Approved Premises, but what really swung the decision was the attitude of the staff.

You see, there are plenty of wedding venues that hold perfectly "nice" weddings as long as you are having the wedding they want you to have. If you want a lovely ceremony and then reception drinks and then a mediocre yet formal sit-down three-course meal followed by speeches and a cheesy disco, they'll make it happen, but heaven forbid you suggest anything outside that template. They look at you like you've grown a second head or something.

Not Stoneleigh. I'm sure they could do that sort of wedding, and they'd probably make a perfectly good job of it, but it would be a wasted opportunity. They're used to holding Major Events. They're not primarily a hotel, or a golf club, or a village hall. They're a dedicated events venue accustomed to dealing with hundreds, thousands of guests at a time. This means that they aren't scared of doing something different. They pride themselves on flexibility. The only limits were (1) the laws of time and space, (2) the law of the land, (3) imagination and of course (4) money. Not as much money as you might think, though. I mean, they're not a budget option, but their quote was competitive with the hotels and golf clubs who were really offering much less for the money.

The Stoneleigh Park staff were absolutely awesome. My first point of contact was a woman called Rachel and she co-ordinated all the planning for rooms, facilities, liaising with our on-the-day suppliers, making sure we had all the right contracts and invoices, that sort of thing. Whenever I had a problem or a query I could go straight to her, and especially in the last few days when last-minute things popped up, she was wonderfully calm and capable at dealing with them.

The other main staff member we dealt with was a man called Mark who was in charge of our catering, and was our "on the day" co-ordinator. He worked closely with Rachel to be sure he knew what our plan was, and then on the day he oversaw events and, with his team, made sure the day went absolutely smoothly. Armed with a phone, a walkie-talkie, and a little golf-buggy type vehicle for zipping about the site from location to location, he anticipated everything. I haven't seen him in a single photo, yet somehow he was always there if we had a query and the answer to any query was usually "already being taken care of," which gave the day an almost dream-like quality.

There was not a single moment, from the initial enquiry to the post-wedding feedback enquiry, where Steve or I felt our wedding was receiving any less attention than the larger events hosted at Stoneleigh Park.

The level of privacy we had was wonderful, too. There was another event on-site that weekend (a scout camp) but the buildings, gardens, and other facilities we were using were for our private use and completely separate from anything else that was going on. We didn't have to fight town-centre car parking or put up with intrusion from pub regulars. We didn't have to schedule our food around other patrons of the restaurant or try and ignore the decorations from a playgroup. There was a handy on-site hotel, but our celebrations were in a completely different building. It was like having a tiny world set up entirely for the convenience of us and our wedding guests.

So we got our bouncy castle. We had a garden. We had comfy sofas. We had pictures by a lake. We had a cream tea. We had platters on tables rather than a buffet. We didn't need a seating plan. We were able to choose what drinks were served at the bar. Our estimated finish time of "erm, we'll have to see how it goes," was acceptable. They were completely unflappable and didn't say No to a single suggestion, although they often made suggestions that enhanced our ideas with the benefit of their experience, which was very welcome.

I really would recommend Stoneleigh Park as a venue to anyone planning a wedding.

RAF Cosford

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This weekend Steve and I did something completely not-wedding-related. We went to RAF Cosford, a RAF museum in Shropshire.

Getting there was an adventure in itself. We decided to invite our twitterfriend @gentlechaos along and offered to give her a lift. This meant fitting three adults and two wheelchairs, plus all the other "stuff" we were each bringing along for a daytrip, safely and legally and comfortably enough for a 25-mile journey, into a three-door fiat Punto. It was a little bit on the tricky side, but we managed really quite well.

packed in

We also met up with one of Steve's friends who was able to give me a few more photos from the wedding. That was great, but the best bit of it was going around in a group of four like that - two walking and two wheelchair users. It was a wonderfully normalising experience as it meant none of us were the odd one out.

Being an airfield, Cosford starts off ahead of the game on wheelchair access. It's a huge flattish self-contained area and the buildings are huge aircraft hangars with lovely smooth flat floors that are a positive delight to move along. However, to make it even better, they have a small fleet (possibly a fleetlet?) of mobility scooters and a few manual wheelchairs available for no charge. There's also no charge for entry, although there is a small car parking fee (even for blue badge holders) of £3 per car.

There's a brilliant hands-on area with lots of little gadgets and gizmos that demonstrate, and allow visitors to experiment with, the principles used in different types of aircraft. It's allegedly for kids, but most of the people playing with appreciating the demonstrative devices were 5ft or taller.

The Cold War exhibition is particularly striking, with aircraft suspended from the ceilings in a very dramatic (and slightly unnerving) fashion.

Like most museums, there's far too much information to absorb on a single visit, which is a shame because by the time we next go back I'll have probably forgotten most of what I did pick up. On the other hand, it means we'll be able to go back without it being repetitive or boring, even if the exhibits themselves haven't changed.

Repeat

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I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:
  • If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.

  • If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.

  • If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.

  • If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).


Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
  • 7% were incapable of any work (Support group)

  • 17% were able to do some sort of work given the correct support (Work-related activity group)

  • 39% were deemed to be fit for work and were moved onto jobseeker's allowance

  • 36% dropped out of the application process

  • 1% of applications were still in progress


Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".


I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

Restrictions Apply

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Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?

As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.

I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!

My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:

What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."

What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."

What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.

You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.

I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.

Riding for the Disabled

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A few weeks ago, I decided to embark on a bit of an adventure. For ages I'd been trying to think of something new to do that would enable me to get out, get some exercise, meet people, but be in a safe environment and within my own abilities. Eventually I got in touch with the Riding for the Disabled Association and after a couple of false starts (many of the groups listed as being local to me were for children during term time only) I found that the nearest place for an unaffiliated disabled adult to try riding was at Lowlands Farm, in Warwickshire.

Steve took me there for an initial visit which made the whole idea seem a lot more realistic. I was able to propel myself around the site and all of the people were incredibly welcoming and friendly. I found myself really looking forward to giving it a try once the paperwork was complete (a sign-off from my doctor to confirm the basics of my condition, not too complicated, but it took a couple of weeks).

Meanwhile, I attended to watch another lesson. If I'd watched someone who knew what they were doing and had lessons X times a week trotting about being excellent on a horse, I probably would have just dropped the whole idea. I've no desire to compete, or even to excel. I don't want to own a horse or spend half my life hanging around stables. I am not really a horsey person. But instead, I was able to watch the lesson of a woman who appeared to be more or less on the same page as I was but a few months into the process. Benefiting from the stretch and the movement, her posture and muscle tone were improving. That was what I wanted to achieve and it made me even more impatient for my paperwork to come through.

Which brings us to yesterday morning and My First Riding Lesson.

First we got me kitted out with a helmet and then I rolled up the wheelie-accessible mounting block. This brought me alongside Harvey at a height that made it easy to sit on him. That was okay, I was all, hey, check me out, I'm sitting on a horse, how good is this?

Then the lady holding the lead rein started to take us away from the ramp and into the huge barn that is the riding school, and I realised just how high up I was sitting, on a moving animal, without any kind of grab rail. I didn't want to touch the reins in case I did something wrong, so I just gripped the saddle and prayed that we would stop soon. Thankfully we did come to a reassuring halt just inside the school and my instructor started adjusting bits of saddle so that I was sitting properly.

Of the next fifteen minutes, I just have a hazy recollection of going round and round the school trying to follow a thousand instructions at once while moving the whole time. I kept wanting to say look, I would be able to sit up/lean back/head up/hands here/feet there/etc if only I wasn't being jolted around on the back of this moving horse! A lot of the instructions made sense. For instance, it was actually more comfortable when I looked up and didn't lean forwards. But then she'd tell me to bang my heels into his sides and (even apart from the yes-I-know-it's-stupid fear that I would hurt the horse) I'd concentrate so hard on that, I would end up automatically looking down again at my feet/my hands/the horse/the instructor.

Nevertheless. There was an awful lot of support and positive reinforcement in with the continuous flow of instructions - it was a really good demonstration of how it's possible to push somebody in an encouraging way.

Getting off the horse was interesting, too. I couldn't get off the way I got on, with the horse alongside the great big ramped mounting block, because it's all metal and concrete and one wrong move could cause no end of trouble. Instead, one lady held Harvey still, while another stood on my right-hand side to help me swing my right leg up and over the back of the horse. My instructor was on the left-hand side and guided both my legs as I slid down to the floor, and then I stood still for a minute or two with my body against the horse, arms on his back, and the instructor supporting me from behind until the world stopped spinning. Hopefully as I gain a better idea of where I am and where the horse is, I'll be able to do that on my own.

Everyone warned me that I'd be sore the next day, but to be honest, it isn't too bad. I mean, I can feel it, certainly, especially in my back and my inner thighs, but I've woken up with worse pain and the regular ibuprofen that I take anyway seems to be holding it in check. I can still move as much as I usually can, and I've even managed to get a load of laundry done.

Next week's lesson is already booked, and I can't wait.

Second lesson

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I recovered pretty well from my first riding lesson. On day 1 I had sore muscles, but nothing too upsetting. On day 2, my muscles had settled down considerably, but my ME/CFS symptoms (sore throat, headache, etc) flared. But on day 3 I was back within normal parameters.

Today was my second lesson. There were good bits and bad bits.

Things started off well. I got onto the horse correctly and was led into the school. I was sitting much more comfortably, I was wearing different shoes and I think that helped my position. I remembered how to hold the reins, and I felt good and confident and totally ready to balance on top of Harvey as he went round and round the school.

Then I realised that, although the instructor (different instructor today) was going to be walking around with me, Harvey wasn't actually on a lead rein. I was supposed to be in charge of getting him to go and stop and turn.

In many ways this makes sense. A lot of how you're supposed to communicate with the horse about going and stopping and turning has to do with how you sit and conversely how you sit is going to be communicating with the horse. So it's a bit unfair and confusing and counter-productive for all concerned if the horse is being tugged left by the instructor when everything in the rider's body is saying Turn Right (and the newbie rider doesn't realise that's what she's doing). It's also about as safe as it could be - unlike cars, horses don't tend to crash into walls when you get something wrong.

However, all the sense in the world could not quell my rising sense of panic. I wanted to beg them to just let me get "sitting" nailed before I tried actual "riding". I was genuinely surprised when my pride and positivity managed to get in between my brain and my mouth, to morph the phrase "no! nooo! let me off! can't do it! don't wanna!" into "okay, absolutely, so what do I need to know?"

To my amazement, I did manage to persuade Harvey to start and stop and turn and change direction several times. But what we then experienced was a clash between my ability, and the principles of teaching.

Principles of teaching are to keep pushing the student to improve. Sit up straight - good! Now put your shoulders back - good! Now try and have your hands about the same width apart as his ears - good! But don't look at the horse, or at your hands, keep looking where you want to go - good! Let your hips move - good! Aim towards the H - use your outside leg - don't lean forwards...

My ability considered on a scale of 1-10 where 10 is my top performance, probably started at about a seven. I got on the horse, I warmed up a bit, my confidence grew, I got a few things right, and I was functioning at a ten! for ooh, maybe a minute and a half. The demands of the teacher increased. My brain was trying to handle more instructions. My body was getting tired. Gradually my ability dwindled to maybe a three. I was dizzy and not breathing well because I was holding my breath as I tried to follow all the instructions at once. We rounded another corner and I was trying so hard to remember which is my "outside leg" that my concentration on sitting up straight all but vanished, and whichever leg it was, the passable squeezes and kicks I was managing at the beginning of the lesson had turned into rather pathetic flops.

At this point Harvey quite reasonably decided that in the absence of a decent rider or a lead rein, he certainly wasn't going to be taking half-baked instructions from the weak and wobbly sack of jelly perched atop his saddle. His walk slowed to a meander and eventually stopped altogether. With the instructor, the supervisor, and the people who were there for the previous and next lessons all calling out words of encouragement, I got another few metres out of him, but by that point I was just burning with humiliation and wanted to not only slide off the horse, but continue right on into the ground.

Of course the ground doesn't work like that, and neither do horses. It's surprisingly difficult to fall off a large horse when you're sitting comfortably with a leg either side and he's standing still, and given a choice, I'd rather not cover my clothes in grubby sand/sawdust/whatever it is. My chair was still outside by the ramped mounting block and my walking stick was in my bag which was hanging on my chair, so I was sitting up there in front of the audience as I waited for someone to bring me one or the other and help me dismount.

I managed to get down more easily than last time, although I still needed help and was hardly elegant. As I joined the other students, a couple of them made sympathetic noises about how difficult it is when you're first learning... but this didn't help, as my tired and embarrassed brain, a hair's breadth away from bursting into tears with frustration and exhaustion, could only hear that people who'd watched my efforts had found me so utterly incompetent that they could only offer pity about just how awful I was. I paid and booked my next lesson as quickly as I could and then went and sat in the car park so that I wouldn't have to talk to anybody for the half-hour until my taxi arrived.

Of course after getting home and having a rest, a cup of tea, and a spot of lunch, I can acknowledge how ridiculous this was (I could sort of acknowledge it at the time but it didn't help). It's not the job of the other students to praise or encourage me, they were trying to be nice and I was behaving like a bit of a twit to run off and hide from the world. It was my second ever lesson, and I did about as well as anyone can be expected to on their second ever lesson. I can even - grudgingly - accept that I do have an illness with physical and cognitive components, and that my rapidly dwindling ability in the latter part of my lesson was to be expected and will probably happen again.

What would be useful is if any readers who've done/are doing horse riding could give me a clue how long I should persevere before I say "no, clearly I'm not cut out for this and should call it a day." When does it become fun rather than a confusing, exhausting struggle?

Disabled, not dead

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Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...

I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.

But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.

Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*

Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.

Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?

Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".

We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.


* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.

Healthy Eating With Mary

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Hello everybody. I feel that I really should be doing some sort of New Year post, and maybe I'll get to that later, but today, we're going to talk about Healthy Eating, which is very important after the excesses of the holiday period.

This... is a Banana.
Banana

A banana is a wonderful fruit, with lots of lovely vitamins, and counts as one of your five-a-day.

However, while the banana is delicious when eaten fresh and unaugmented, the essence of cooking is to improve upon the raw materials by combining them while retaining the goodness of the basic ingredients.

For this reason, I have added a few chocolate buttons.
Montezuma chocolate buttons
You will notice that the chocolate buttons in the picture are from Montezumas. By using these chocolate buttons I am supporting ethically-trading British artisans, so really this is a contribution to both the planet and the economy - quite apart from the well-known virtues of quality cocoa including its antioxidant properties and its ability to trigger a release of your body's natural endorphins.

However, we again face the problem of core ingredients on their own being boring so I have decided to add a secondary chocolate element to complement the buttons - Ben & Jerry's Chocolate Fudge Brownie ice cream.
Ben & Jerry's

My next addition provides much-needed calcium as well as offsetting the cocoa level of the dish. Yes, it's squirty cream.
Squirty cream
My personal belief is that the satisfaction gained from a good squirt is a restorative to the soul, making this a dish with psychological benefits in addition to the nutritional aspects already discussed.

Finally, a drizzle of chocolate sauce adds aesthetic appeal and pulls the whole dish together.
Chocolate sauce

all gone
I feel much healthier now.

(This blog post completed before the inevitable sugar crash. Apologies for typos.)

I'm confused by the BBC

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The last couple of weeks have seen the Coalition's Welfare Reform Bill (WRB) being voted on in the House of Lords.

There are two main aspects of disability benefits. First is ESA, Employment Support Allowance. This is the money given to people who are unable to work because of illness or disability. Then there is DLA, Disability Living Allowance. This is the money given to people regardless of their income or whether or not they are in work, in recognition of the increased costs that come with disability.

It is possible to get both; it is also possible to be eligible for either one but not the other. I myself get DLA (because I have substantial disability-related costs) but not ESA (because I am working).

Part of the WRB includes plans to replace DLA with PIP, Personal Independence Payments. One of the stated aims of the WRB is to reduce the DLA spend by 20%. Since the DWP's (Department of Work and Pensions) own figures show that fraud is only 0.5%, this means that genuinely disabled people are going to be hit by this - which is why we're all worried.

(Is everyone keeping up with the abbreviations at the back? A cynical person might think that part of the reason for renaming as well as reforming this benefit is to make it far too complicated for the average news column to be able to report on.)

Disability campaigners have been asking for a six-month pause to the WRB so that a proper independent consultation can be carried out, and to start the change slowly with a pilot project to uncover and iron out the teething troubles. We are of the opinion that if the government is going to fiddle about with the benefits that support the most vulnerable, most disabled, and/or most ill people in the country (including many who are terminally ill and only claiming for their last few months of life) they should think really carefully about it and be sure that they will do as little damage to as few people as possible.

Last night, the Lords voted. The government won, by 16 votes, the WRB rattles on to the next stage. The good news is that in order to swing the vote, Lord Freud had to make an awful lot of promises - under oath and on the record - about the implementation of PIP. Our amendments aren't passed, but some of what we were asking for in them has been conceded, and that's more than many of us expected.

What does the BBC have to do with this?

Well, the BBC is confusing me.

First, they ignored the issue. If you were on Twitter, you can't have missed the #spartacusreport hashtag that was top trending in the UK for most of last week. It refers to the Responsible Reform report. Auntie Beeb had time to do all sorts of analysis about middle-class shoplifting, but did not so much as acknowledge our existence.

Then Radio 4's News Quiz did sterling work using comedy to demonstrate exactly how ridiculous the proposals are. Hat-tip to Sandy Toksvig and Sue Perkins in particular.

But from there on in, and in the sections of the Corporation that are defined as News rather than Entertainment, it's been the government line all the way.

For instance, Maria Miller, the person who is laughably job-titled Minister "For" Disabled People, was given unchallenged airtime to claim that Responsible Reform had only used 10% of the responses to the initial WRB proposals. Technically, that's true. There were over 5,000 responses and we only used about 500. Why? Well, the 500 responses we were allowed to use were official responses from "public" people like the Mayor of London (who objected to the proposals on several counts) and organisations like the Papworth Trust, Mind, and Scope (who also objected to the proposals on several counts). The report uses all of the "official" responses to which we were granted access. However, for obvious reasons, we weren't allowed access to the private responses from private individuals. This includes the responses from many campaigners who had written to describe how they, personally, as individuals, would be affected and what their fears were. Yet to hear Miller speak, you'd think we'd cherry-picked a tiny number of supportive statements and ignored thousands of reports in support of the WRB.

Where was the balanced reporting? Where was the skeptical journalist to ask Miller if the thousands of private responses we weren't allowed to use were broadly for or against the government proposals? Why are her vague and often misleading comments allowed to pass unchallenged?

And then this morning, this article (which I'm copy/pasting from in case it gets edited in future, as the BBC often do):
"The government has headed off a House of Lords defeat over plans to replace the Disability Living Allowance.

Ministers want to amend the system to make sure claimants undergo more testing, but opponents say this will mean 500,000 people will lose benefits."


Firstly, the 500,000 losing benefits. The WRB has a stated aim to reduce DLA by 20%. There are 3.2 million people on DLA (source: dwp.research.gov.uk); a 20% reduction is therefore 640,000 genuinely disabled individuals. So we say that the WRB - not the testing - will mean 500,000 people lose benefits partly because it's a nice round number and partly so that no one can accuse us of over-egging the pudding.

Secondly, ministers do not want to make sure we undergo more testing. They want us to undergo different testing (for which they will pay a private company because they think asking our NHS doctors for medical evidence is inappropriate) and they want us to undergo more frequently repeated testing.

We have said that making claimants with incurable conditions undergo frequently repeated testing is a waste of governmental time and money ("no, my leg still hasn't grown back").
We have also said that, particularly with regard to people with mental health issues, too frequently repeated testing causes distress to claimants which may impair their recovery.

We do not pretend, nor have we ever said, that making claimants undergo more testing will mean 500,000 people losing benefits. Those two items don't belong in the same paragraph, let alone the same sentence.

You get the idea. There are scores of examples just from the last two days - far too many to deconstruct all of them. We are not seeing balance from the BBC. First we were dismissed and ignored, now we are being misrepresented as ill-informed scare-mongerers making disjointed and illogical claims that we have never made, while Miller and her ilk are permitted to broadcast spin and propaganda that the WRB itself and the DWP's own statistics disprove.

The reason I feel upset by this behaviour from the BBC when I can usually ignore it from the Daily Mail is the same reason why I feel more betrayed by the 65 Liberal Democrat lords who voted with the government than I do by the 150 Conservative lords. When people or organisations behave in the way you expect, it doesn't bother you - but when people or organisations you believe in let you down, it stings.

We don't expect the BBC to support us, but we expect neutrality, balance, investigation, factual reporting. We're obviously upset that the Lords' vote went against us, but the way the BBC are treating and portraying us only increases the negative image of disabled people and adds insult to injury.

Inaccessible Accessibility

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I am, and have been for some years, a holder of a Blue Badge. The Blue Badge is a wonderful thing for access. My badge is up for renewal in a couple of months, and Warwickshire County Council have very helpfully (credit where it's due) sent me a renewal form and some guidelines.

They need proof of:
  • My name, in other words my marriage certificate.

  • My address, in other words my council tax bill.

  • and my eligibility, in other words my letter confirming my award of Disability Living Allowance including the High Rate Mobility component.

So far no problem.

BUT!

They don't want the responsibility of handling original documents. They want me to send certified copies.

Okay, that's fairly sensible too. I prefer to keep my original documents in my own posession and I appreciate the effort to reduce the risk of losing them.

According to most of the UK, a certified copy is a photocopy of a document that has been verified as being true by a person who holds a certain position of responsibility. A doctor, a policeman, an MP, a civil servant, you get the idea. The Jobcentre made a certified copy of my marriage certificate when I went in to change my name. Or, that proud institution the Post Office will make certified copies of up to three documents for the fairly reasonable sum of £7.15 as part of their passport and identity services.

These certified copies are good enough for most institutions and can be used for opening bank accounts or getting mortgages, but apparently they're not good enough for Warwickshire County Council's Blue Badge scheme. Warwickshire County Council insist that the certified copies must be made by someone who not only fits the usual criteria, but also knows me personally and is not a relative.

(Amusingly, however, I can self-certify my own photograph for the badge as a "true likeness" without it having to be corroborated by anyone.)

I couldn't quite believe it and phoned them to check. The conversation went a little bit like this:
(Me): I'm a blue badge holder. I don't drive. I'm written up as "socially isolated" on my care plan. I don't know that many non-relatives. Can I bring in my original documents to your offices and wait while you copy them?
Only if you know someone here who can confirm that you are who you say you are.
Oh. No, I don't. Well, can I send normal certified copies from the Post Office?
Do they know you personally at the Post Office?
No, but they do proper legally acceptable Certified Copies...
They have to actually know you and be able to confirm that you are who you say you are. We've had to introduce these measures to combat fraud.
But you seem to have made it difficult for precisely the people who the scheme is aimed at! The reason I don't know people is because it's difficult for me to get out and about!
I can't discuss policy. There must be someone. Your best bet is someone who owns a local business. Do they know you at the local shop?
No, they don't know me at the local shop, because I'm a blue badge holder and as such I don't walk to the shop.
Or your bank?
I bank online. I shop online. I work online. I do most things online, because it's really difficult for me to get out and about and that is why I have a blue badge!
If you're working, how about your boss?
I am self-employed. I don't have a boss and I doubt you'd let me self-certify.
Anyone you know through work who runs their business?
Clients? Some of them would be eligible, but most of them have never met me, because I work online, what with the whole being eligible for a blue badge because it's difficult for me to get around issue. They only know me on email and phone calls.
But they know that you're you - they can do it!
May I ask you a question? Imagine you have a business. Imagine you try to project a professional image to your clients of being capable and self-sufficient. Would you feel comfortable placing yourself in a position of need? Giving one of them your disability benefits confirmation letter to thoroughly examine?
er... I see the problem but it looks like that's what you're going to have to do.

Warwickshire County Council, ladies and gentlemen. Recommending that I go whimpering to my clients. Advising me that I am obliged to do this in order to obtain an access tool. Refusing to accept the perfectly accessible and inexpensive identity-checking service offered by the Post Office. Creating additional barriers. Well done, boys and girls.

There is a happy ending. Another disabled person is helping me out. That doesn't make Warwickshire County Council's attitude acceptable.

Now, to take a deep breath and try to rewrite this post in a less ranty form, in the hope that explaining their error to Warwickshire County Council might lead them to change things in future.

That's not a compliment

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Written for Blogging Against Disablism Day 2012.

Blogging Against Disablism Day, May 1st 2012

I try to keep my personal and professional identities separate. When people ask me what I do, and they are potential friends rather than potential clients, I tend to grin and rather flippantly tell them that I write blethers for other people's websites. That's not all of what I do, not by a long way, although it's the favourite part of my job – it's interesting, I'm good at it, and I often enjoy it. But let's face facts, the question “what do you do?” rarely means “please describe to me in detail everything you do with your day,” rather it means “tell me something that will fill this conversational gap, and possibly help me to build my mental image of you.” Telling them with a smile that I write blethers for other people's websites is a short, good-humoured and effective way of filling this hole with the image of a woman who spends her day working in an office, at a computer, the image equivalent of a Visa card, acceptable everywhere.

What does that have to do with disablism? Well, it's about where the conversation will go from there.

Often people feel compelled to congratulate me. Good ways of congratulating a person include phrases like “Hey, that's great!”, “it must be so rewarding to have a job you enjoy,” or even “I wish I could do something like that!”

Unfortunately all too frequently I hear something along the lines of “Great! At least you're doing something with your time, not like all those lazy benefit spongers, half of them aren't what I'd call disabled anyway, I mean if you're doing it, why aren't they?” Often this is followed by an anti-welfare rant rounded off with a baseless assertion that “most” disabled people “won't even try,” and a final verbal pat-on-the-head to me for “giving it a go.”

TOP TIP. The way to compliment me is not to disparage the entire minority group to which I belong. Treating my work, where people pay me money for my skills, as nothing more than a time-filler is also insulting. Furthermore, it would be good if you can avoid waving around the negative stereotypes and slurs which have been applied to me and my disabled friends on a regular basis for the last few years, and while we're at it, please don't attack the welfare system which quite literally saved my life by keeping a roof over my head and food on my table for the first couple of years when I got sick.

I'm one of the lucky ones, and I don't want the price of that luck to be ignoramuses trying to use me as a stick to beat down the people who have not been as lucky in similar situations.

Naidex 2012

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On Wednesday, I went to Naidex National at the NEC, Birmingham.

I have to say, Naidex itself wasn't as good as last year. Last year, I saw all sorts of innovative products and came home with lots of literature and a wish-list as long as my arm. I also picked up goodies like the National Trust's Access Guide, and was able to have demonstrated to me how much more comfortable an ergonomic office chair can be. A number of stallholders were communicating on Twitter, having actual conversations with people who said they were going to Naidex, encouraging them to come and say hi at their stall, and I dropped in on several of them. There were also a few inventor/entrepreneur types there, interested to hear ideas about what products we'd like to see in the future. I felt like I was the target market as a disabled adult in charge of her own home, equipment and finances.

This year was different. Only one company - PoolPods - engaged with me on Twitter. Their product, while I'm sure it's lovely, isn't really relevant to me - but I thought I would say hello anyway. Except I couldn't find them! Step One was easy, finding them in the list of exhibitors, they were listed under "P" for "PoolPods", simple. Stall G82. Step Two was slightly more difficult, trying to find Stall G82 on the printed room plan, but after a bit of hunting I spotted it tucked somewhere at the back of the hall. But Step Three, actually finding that stall? Couldn't do it. There were frequent traffic jams because a small cluster of two or three people standing in front of a stall could block half the aisle. Add to that the lack of signposting or labelling of the aisles (would it be so hard to have North-South aisles numbered 1, 2, 3, and East-West aisles labelled A, B, C?), the manoeuvrability issues of many attendees (wheelchairs don't tend to sidestep well, mobility scooters are often quite long) and the usual pedestrian traffic flow problems (people stopping for a chat on a busy intersection), and it was nigh-on impossible to follow a planned route to a particular point on the map. Nor was it possible to just wander up and down the aisles until you found what you were looking for - the layout was confusing, the aisles weren't continuous, and stalls faced all directions. There were several stalls I saw twice or three times and others I didn't see at all.

The small, interesting vendors with "everyday" disability products (such as Trabasack and DisabledGear) didn't seem to be present this year. I also felt that there were fewer stalls aimed at "people like me". For instance, I saw umpteen companies offering incredible, amazing off-road wheelchairs, powerchairs, hand-cycles and suchlike. We're talking massive knobbly off-road tyres, aggressive-looking LED arrays and exciting metallic paint finishes. That's great, but these aren't the sorts of chairs you can use for your everyday needs. You couldn't ride them into Starbucks, or a high-street shop, or a work meeting, or your kid's school for the parent-teacher evening. They also probably won't fold down to fit in the boot of the average Ford Focus, either. They're aimed at people who are disabled but who also have TENS of THOUSANDS of pounds to blow on leisure equipment over and above what they use every day. This made me feel sad. I mean, on the one hand it's terrific that disabled millionaires have so many choices of how to spend obscene sums of money, but on the other hand, products like comfortable wheelchair jeans are going to be far more relevant for far more people.

But! That was only part of why I went. The other part was to have the opportunity to meet up with other disabled people, and that was managed with great success. One is a very good friend who I have met before on several occasions, and we had a much-needed cup of tea together that in itself made up for the disappointment of the exhibition. Another person I have "known" and considered a friend for many years, but only online, and my PA tells me that my face lit up like a Christmas tree when I saw her for the first time. Others had familiar names and I'm pleased to be able to add faces. Eventually our group - consisting of two powerchair users, two manual wheelchair users (myself included), one person using a mobility scooter, and two people without any visible mobility aids at all - made our way into a well-known pub/restaurant chain for lunch.

Incidentally, I still get a thrill from that. Us being able to go and have lunch together in a pub is concrete proof that campaigning for equality works, has worked, and can continue to work. There's still a way to go, but it would have been unthinkable thirty years ago.

The meal was not spectacular. The company and the conversation were. There's an unusual sense of freedom when socialising with other disabled people, because you can actually go ahead and talk about disability issues without having to draw a diagram of the welfare/social care systems, and without being pitied, and without having to listen to any ablesplaining about how surely X doesn't happen any more, and the real problem is Y, and if you try Z it'll all be sorted out. No one feels the need to make the stupid jokes about running over people's toes and there's no sense of being the "odd one out". For me, it's also really refreshing to socialise in a role other than as "Steve's wife" - Steve is a nice person and so are his friends, and I like spending time with them, but it's a completely different thing to socialising as purely myself.

Of course we're all rather wiped out now. For spoonies, a look around an exhibition followed by a couple of hours having lunch and a chat with half a dozen friends can have repercussions for days on end. It's embarrassing to think about how long it's taken me to write this post. Nevertheless, I still think that despite the disappointment of the exhibition itself, the day was worth it.

This is a technical document

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Well, of course, it isn't, but I could put words like Cisco and network and voice over internet protocol all over it, and then it would look a bit like a technical document. It wouldn't make any sense, but I can't imagine who'd notice.

You see, ladies and gentlemen, there have been complaints. A particular reader is being a Bad Example To The Younger Generation by reading my blog at work, and apparently I must post more often. It's okay, English is unlikely to be the first language of anyone peeking over his shoulder. Yes, hello you. :)

There now follows a diagram. This proves the technical nature of this document which is entirely work related.

graph showing number of passwords you have against times you use the wrong one

Look, I'm sorry. I mean to write more. I also mean to not just write about disability. I want to write more about my life and what I'm doing, but things divide into two groups:
  • Things which are too boring and inconsequential to write about.
  • Things which are quite interesting and I want to write about, but after doing the things, I'm too tired to write about the things until later.
Perhaps I should try doing shorter posts?

Today, I did some grocery shopping online. The best bit of doing online shopping when your brain doesn't work the way it's supposed to, is that when the shopping arrives, you've forgotten what you ordered. It's as if some kind of benevolent pixie sent you £70 of delicious food, and there isn't a single item you don't like!

I also had my laundry done. Yes, that's right - don't tell any of the women in my family, but I use a laundry service for my towels and bedlinen. I am a slattern who does not do her own housework. Or possibly a person who prefers not to injure herself wrestling large, wet, heavy pieces of cloth. Either way, in the morning the nice man picks up a sports bag of smelly linen from my house and in the evening he brings it back, fresh, clean, dry, and neatly folded.

I'm struggling with the paperwork for my assistants at the moment - making sure they get paid, and the monitoring that Social Services conduct to be sure I am using the money properly. I set up my systems really well, and my more lucid self has written out clear instructions for how to do each stage so that when I am not very well, I can still get things done. The problem at the moment is I quite literally don't know what day it is. I have "today" and "yesterday". All other days are confused together in a big tangle. So the timesheets and invoices got in a muddle and weren't submitted at the proper times... I think I've unpicked it, though.

Steve and I have been married for nearly a year and we are wondering what we should do for our anniversary. He's been able to book a little bit of time off work and we're looking at options. We have all these ideas - we'd love to go back to the Eden Project, or alternatively there are a few places in London we'd like to visit, for instance the Science Museum - but Steve is so tired out from work, I think he could sleep for a fortnight. We could just stay home and try to put together our wedding photo album. Right now we have thousands of photographs backed up to multiple storage devices, but unless you count shoving a USB stick into a digital photo frame, no album. There are also several guests who we have no pictures of, which is a bit sad.

The book I'm reading at the moment is Memoirs of a Geisha by Arthur Golden. I have read it many times - I first picked it up in high school. It's a bit of escapism, I suppose. I have the DVD as well, but I think the DVD won't make much sense to people who haven't read the book because it misses out an awful lot of backstory and historical detail. Some of the "historical" detail is inaccurate but then it is a fiction novel.

I don't know. What else? What do you want to know?

Following technical complaint about the diagram above: (written by evilstevie)
This diagram clearly only holds true for a relatively small number of passwords - above a certain point you are either some kind of memory-whizz or use a password-manager program to ensure the right password goes in the right box. This has to be the case as most applications of passwords also have something in place to prevent brute-force guessing of passwords, either a counter or timer (or in some cool applications, both) to make it difficult or impossible for you to try more than a few passwords. At a certain point on the graph you simply get a flat-line as you can't enter any more wrong passwords and you stop making new ones or come up with a new way of dealing with passwords. Also, I'd like to add that Batsgirl's clearly been around me too much when she considers VOIP usable in everyday conversation or blogging...

First Anniversary

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It seems hard to believe, but Evilstevie and I have been married for an entire year.

Truth be told, the year, while not tragic, has not been a terrific one either. His work schedule has involved a level of "out of hours" work rather higher than we had expected and this extra work tends to crop up at extremely short notice - we rarely know in the morning whether we will be having an evening meal together. His workload over the last twelve months has been so heavy that it was January before he was able to take time off work for our "honeymoon" and he is still accruing "time off in lieu of hours worked" faster than he is getting a chance to actually use it. For my part, chronic illness does not respond well to such chaotic routines, so my pain and energy levels are no longer as well controlled as they once were, which in turn means the carefully balanced dominoes of my overall health and ability to Do Things (work, socialise, eat properly, manage disability bureaucracy) have crashed. It's all a bit of a mess, really.

On the bright side, we're very much still hanging on to each other and making each others' worlds that little bit nicer. This is definitely a more positive outcome than the alternative, which would be each of us yelling at the other "this is all your fault!"

And on the even brighter still side, at the beginning of May, Evilstevie came home with the biggest grin I'd seen in a long time and proudly announced that he'd booked the week of our anniversary off work, and we both squeaked and hugged each other and began to make plans.

On the morning of our anniversary, we had a quick photo-session to try out an idea I'd picked up via Ravelry. This was to take a picture of the two of us holding a picture of the two of us from our wedding. We took several - this is one of my favourites, although you can click through to see the others:

me and Evilstevie looking at each other, holding between us a black and white photograph of us kissing on our wedding day

Then next year we print off one of those pictures and do the same thing again... you get the idea.

Photos taken, we packed ourselves into the car and set off to use an outstanding wedding gift from some very generous friends - a night at a luxury B&B in Devon. The weather steadily improved as we drove south and by the time we arrived I was regretting my failure to pack sun-cream and sandals. Instead we got a chance to sit in the shade looking out at glorious countryside, with tea and knitting for me, and coffee and camera for Evilstevie. Dinner in a nearby pub/restaurant was delicious and falling asleep in a beautiful room under crisp, fresh sheets felt like the holiday had properly begun.

The following morning, after guiltily declining most of the humongous breakfast spread on offer in the B&B's dining room, we loaded back into the car to go to one of my favourite places on earth - the Eden Project.

a stitched panoramic photograph of the Eden Project

me sitting in my wheelchair, fiddling with my phone, with the Eden biomes in the background

We first visited the project in January, and if you GiftAid your entry fee then you can get a year's pass to return as often as you like (or at least, as often as you can, because I think I could go every week for a year and not get bored). A brief stop to share the joy with Twitter, and then we spent the morning trekking up and down the outdoor areas, the idea being that if it started to rain, then we could head for the indoor biomes. Of course it didn't rain at all, and by the time we'd decided to stop exploring outdoors and head for the Link, my shoulders were about ready to drop off. We had a break for a late lunch, but I felt that I wouldn't manage much more pushing and that I'd like to just go into the smaller Mediterranean Biome to relax, instead of trying to hike around the larger, steeper, hotter Rainforest Biome. Evilstevie agreed and we made our way across.

That was where we found "the Back-rub team" offering 15 minutes of reiki back massage for £10, which to my burning shoulders and floppy exhausted arms seemed like a wonderful idea.

It really was. I mean, I didn't leap up and dance my way around the citrus grove or anything, but after a bit more of a rest and stretch I was able to not only get around the Mediterranean Biome but in short bursts I managed the Rainforest as well.

That night we crashed out at an unremarkable Travelodge in Bodmin, with the idea being that in the morning we'd be able to head home or elsewhere as the fancy took us. I'm sure nobody will be surprised to hear that in the morning, despite being shattered, we went straight back to Eden - we didn't find the back-rub team but we caught the Storytelling and had a lovely lunch before reluctantly heading for home and a couple of days to recover.

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