The Discworld Wedding Quotes Project

It's time for another wedding project!

I've been working on this one for the best part of a year. Steve and I are both Discworld fans - you can determine the point at which we moved in together by checking at which point in the series we start to only have one copy of each book in the house - and I wanted to incorporate some Pratchett into the wedding in some way.

The wedding ceremony as described in I Shall Wear Midnight seemed somewhat impractical for a person with limited mobility, and our venue probably would have had something to say about it as well, so I settled for digging up a few choice quotes about relationships.

My first stop was the internet, but googling for "discworld wedding quotes" just seemed to turn up forum after forum where brides and grooms asked if anyone knew of Discworld quotes suitable for weddings, and not much by way of answers.

So I decided to check for myself. One book at a time. Through the currently published canon of 32 Discworld Series books, 5 Discworld for Younger Readers books, and several "extras" such as The Last Hero, Nanny Ogg's Cookbook, and of course, Where's My Cow?. It took a while.

The biggest difficulty is that Pratchett is a master of extended metaphor. You find the most beautiful descriptions of love and relationships, but you also find that you'd have to copy out three sections of five pages each of backstory, most of which would be completely irrelevant text, to explain why something like "but they went the long way, and saw the elephant," is so meaningful.

Nevertheless I now have a document with some 17 pages of Discworld quotes relating to weddings, marriages, and love in various forms. I see no point in keeping this to myself when other people clearly want the information, so I will spread them over several posts and then edit this post to link back to them.

There are some books I haven't checked - the diaries, for instance - and some whose inclusion I'm still unsure about, such as Nation and Good Omens. There will also be quite a few quotes that I've missed. Please feel free to fill any gaps.

Part One
The Colour of Magic, The Light Fantastic, Equal Rites, Mort, Sourcery, Wyrd Sisters, Pyramids, Guards! Guards!, Eric, and Moving Pictures.

Part Two
Reaper Man, Witches Abroad, Small Gods, and Lords and Ladies.

Part Three
Men At Arms, Soul Music, Interesting Times, Maskerade, Feet Of Clay, Hogfather, and Jingo.

Part Four
The Last Continent, Carpe Jugulum, Fifth Elephant, The Truth, Thief of Time, and Night Watch.

Part Five
Monstrous Regiment, Going Postal, Thud!, Making Money, and Unseen Academicals, plus The Last Hero and Where's My Cow?

Part Six
The Tiffany Aching books: The Wee Free Men, A Hat Full Of Sky, Wintersmith, and I Shall Wear Midnight.

Part Seven
The Amazing Maurice (except I couldn't find anything) and Nanny Ogg's Cookbook.

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

Stunt Bride and Groom, complete

Further to my previous post, I am pleased to present the completed Stunt Bride And Groom!



I'm quite pleased with how they came out, really. I think we hit the right level of detail. For instance the Stunt Bride definitely looks like a bride, but her dress gives away only the already-known facts about my dress, namely that it is white and that it is a wedding dress without a train. I am also happy to reveal that my full-size dress is not made out of felt. We considered making the dolls hair and glasses but decided that it was better to keep it at a completely non-detailed "concept" level.

I was wrong about the jacket being the most complicated item. I'd overlooked the facts that:

• The jacket is open at the front, whereas every other item of clothing would ordinarily be done up with zips or buttons. Except I don't have zips and buttons that small, so the clothes that needed to be done up had to be sewn onto the dolls. This involved a lot of mattress stitch and, for Stunt Bride in particular, an undignified experience with a teaspoon up her skirt.
  


• The dolls have metal poles up their bottoms which rather interferes with the proper fit of trousers. I think it took me nearly as long to properly stitch what Steve refers to as the "arse-fly" as it did to do all of the leg seams. However at least Stunt Groom won't get debagged at his wedding reception.

The dolls both balance nicely, Stunt Bride can certainly stand up for much longer than the real bride ever can, and the arms and legs and heads are still poseable, so hopefully they will keep the photography posse amused and we'll get some good pictures.

Meanwhile the happy couple are posing together in our living room, and it's making me feel really happy to look at them.

Edit 19:50 31/01/11 to fix link.

Stunt Bride and Groom

I’ve been stressing out a little bit about the wedding photos. With Steve and many of his friends being keen amateur (and in some cases, semi-professional) photographers, there are going to be hundreds, if not thousands, of photos taken at the wedding.

I don’t photograph well at the best of times - I always have my eyes half-shut, I’ve got terrible skin, my posture is awful, and I’m that kind of overweight that is noticeably flabby but still too skinny (and with too small a cleavage) to be able to wear the stuff at plus-size clothing stores that makes larger people look good. Steve also has a tendency to, in his words, "look dead" in photographs. We have many strengths as a couple but conventional attractiveness is perhaps not one of them.

Over the last year I have seen many, many wedding photographs. Some have been beautiful. Others have been hideous. The ones that scare me aren't the Big Fat Gypsy Wedding ones full of orange faces and enormous pink dresses, because the people in those photos have achieved the 'look' they were aiming for and the fact that I don't find it attractive is irrelevant. No, the ones that scare me are the ones where someone has tried to achieve a look and they haven't quite managed it. Cakes that cost a fortune but look tiny and forlorn. Venue decorations that make you think the venue probably looked better without. And above all, brides and grooms looking tired and miserable.

Looking through yet another set of ugly, depressing wedding photos, I turned to Steve and asked if I could have a Stunt Bride for the piccies.

He said yes. We formulated a PLN.

For Christmas, we asked my parents for a couple of those little wooden poseable artist’s models, which we now have. One is six inches tall and the other is five and a half inches tall. These are our Stunt Bride and Groom. Stage 1 of the PLN was complete.

The next phase of the PLN is to dress them in very rough approximations of our outfits (partly because future-mother-in-law will kill us both if I reveal too many details of The Dress). I'd been planning to get cheap "Barbie and Ken wedding" dolls clothes but then I discovered that dolls are generally bigger than six inches and that dolls clothes are Not Cheap. However I used to make clothes for my dolls all the time as a kid, so I decided it would be worth a try. Discussion with knitting friends brought me to the conclusion that the best way forward would be to buy some squares of felt (soft, durable material without a distinctive grain or bias, unlikely to fray, reasonably cheap to buy in small quantities) and take it from there.

I am happy to report that I have just finished making the Stunt Groom's jacket.


This was the most complicated item and the successful completion has put me in a very positive frame of mind for the rest of the project.

We will therefore have pictures of “the bride and groom” at all areas of our wedding, with all the unique features of our wedding, having a lovely time, without a spot, scar or cellulite wobble in sight… just in case the real pictures are too awful to look at.

I shouldn’t feel this much better for such a silly solution, but I do.

Ugh!

Over the last few months I've been hanging around on a couple of bridal/weddingy forums.

For very good reasons, it's not the Done Thing to out and out criticise other people's wedding choices.

It's acceptable to offer constructive input when asked, and to show respectful interest in the different customs and traditions being observed. That's a good thing. When someone is trying to decide between bows and floral swags to decorate the ends of the pews in their church, it's a good time to offer any experience of those products, but it's not the time to spark a fundamentalist religious debate about whether they should be getting married in a church at all. Tolerance is important in a community and it's great that different people, in different countries, having very different weddings, can all support each other.

This, however, is not a community. This Is My Blog, just like it says at the top of the page, which means it's not inappropriate for me to voice my opinions, and this has been bubbling up inside me for months now. In the interests of civility, I must stress that I recognise that different people have different tastes and if you want any of this stuff at your wedding, you go ahead, it's your wedding. If you are planning a wedding, or you just had one, you may prefer not to read any further. This is your fair warning: you may be offended.

But at last, I must say that I find the following things hideously tacky.

• White hoodies with diamante transfers saying “Bride” or “Maid of Honor”. (American spelling intentional.) Yes, while getting ready for your wedding it's a good idea to wear something warm and comfortable that can absorb any spills. It's good to wear something that is fully front-fastening so it can be removed without disturbing your hair and makeup. But white with diamante? My dear, you will get enough attention today once you're in the dress. Be content.


• Flip-flops with soles that print “Just” and “Married” as you walk along wet sand. My PA spotted these in a craft store and proposed them as the winner of that store's Wedding Tat collection. And believe me, they had some tat.


• Hen parties with “naughty” games and gifts. Well done, it's a (whatever) shaped like a penis. It's not comical, it's not erotic, and the faint air of desperation is unsettling. Lingerie and sex toys can be great, but I can't imagine there's anyone who's actually turned on by pink plastic fluffy handcuffs, or anything with a picture of a cat and “Sex Kitten!” emblazoned across the front.


• Music on the wedding website. Internet access has reached a point where even your parents have it, so a wedding website is no longer necessarily a celebration of self-obsession viewable only by other geeks who aren't invited to the wedding anyway. But automatically playing music is a step in the wrong direction, as are hearts falling across the screen, or anything that won't properly load onto the smartphone of a guest who's got lost on the way to the venue.


• Vistaprint overdose. On the one hand, Vistaprint do a very good line in affordable, fuss-free printing that can be invaluable for things like invitations and RSVP cards. On the other hand, just because they can put your picture on more or less anything, doesn't necessarily mean it's a good idea. The overdosing idea also applies to people who went to a venue dresser for a few flowers/balloons/table decorations, and ended up ordering a twenty-foot-tall inflatable Bride and Groom in the belief that these would somehow look appropriate outside their elegant, classy venue.


• Pretending to be something you're not. This covers people getting married in churches who don't believe in God, people getting married in libraries who don't read, people who order glass carriages and aren't princesses (Kate Middleton got that bit spot-on), and people who order fancy formal meals that they're not sure how to eat. You make some pretty hefty promises on your wedding day - make them as yourselves.

Ohhhhhh, that feels better.

One Month Before Heartbreak

This post is rambling, but that can't be helped. There's just too much to cover.

One Month Before Heartbreak is a blogswarm to try and raise awareness about the consultation on DLA reform, which ends on 14th February. I'd like to encourage anybody, disabled or otherwise, who is bothered by these reforms, to join in.

This post from the Broken of Britain explains a bit more about it, or if you're feeling brave you can download the official DWP consultation document from the DWP website.

The short version is: DLA is a benefit paid to long-term disabled people with significant care and/or mobility needs. It is paid regardless of whether or not a person is working, in recognition of the fact that the expenses of disability are non-negotiable - to give just one example, a working disabled person who finds their budget is tight is probably unable to save money by choosing to get rid of their car and walk places.

The coalition government intends to rebrand DLA as PIP (Personal Independence Payment). As part of this rebranding exercise, the qualifying criteria will be shifted with a stated aim of reducing the caseload by 20%.

As we've looked at before, benefit fraud is only around the 1% mark, and for DLA it's even lower, at just 0.5%.

This means that there's about 19% of the caseload (that's 570,000 people) who are genuinely disabled - not just that, but disabled enough to pass the already stringent tests - and legitimately claiming help with the unavoidable costs associated with disability, who are suddenly going to find themselves up a rather nasty creek.

We don't know who's going to be "safe". The document talks about continual reassessment (at great expense to the taxpayer and great profit to ATOS) even for people with lifelong and incurable conditions.

It talks about withdrawing support from people who use wheelchairs independently on the basis that since the DDA, the whole country must now be fully accessible to wheelchair users and thus there is no additional expense and support is no longer needed. The fact that many of those wheelchairs were purchased using DLA is not properly addressed.

It talks about introducing not just more restricted residency rules, but also rules about "presence" (ie attending regular meetings at the Jobcentre, a far from easy task for a disabled person) to bring it in line with other income replacement benefits and encourage people into work. Except DLA is not a sodding income replacement benefit and has bog-all to do with whether or not a person is working! And what if you are working? Will you be expected to take time off to attend your DLA interviews? Will your employer be expected to just suck it up that you are unavailable?

How am I affected personally? If it hits me, I will no longer have any personal income beyond my part-time self-employed earnings, and as I've already admitted, my business income after business expenses does not cover even the most minimal costs of living. Without DLA, not only will I be dependent on Steve to meet our combined bills like rent, council tax and electricity - I will have to go to him with my hand out for most of my clothes, and when I need a taxi to a medical appointment, or to buy a new prescription prepayment card, or replace my mobility aids.

That's not the point, though. At least there is someone in my life who will, in a crisis, fund the essentials of life. Many people are not so fortunate. They don't have anyone to help them out, or worse, the person who helps them may easily become resentful of the extra costs and start withdrawing support.

Finally...

The single thing I have done in my life which has saved the Great British Taxpayer the most money was getting together with Steve. All of a sudden, they no longer had to pay my housing or council tax, and the care I was deemed to need was greatly lessened by the fact I was living with a non-disabled adult. Then, thanks to the support and stability Steve gave me, I was at last able to get a part time job, which meant I was no longer claiming Incapacity Benefit or Income Support, either, which meant I was no longer entitled to free prescriptions or dental care, nor could I claim back costs of transport to medical or DWP appointments, and of course I was now paying in tax and NI. I still cost the system money, true, in the form of my DLA, the Access to Work scheme, and my little bit of social care. But this is much, much less than it cost to keep me alive as a single person.

I would not have been able to develop this relationship and thus become a working member of society without the independence DLA gives me.

It's not something that's going to persuade the coalition, but the fact remains - a non-disabled person might willingly move in with a disabled partner who is independent and only increases the food bill, but they're not so likely to take on someone with higher than normal expenses and no income at all.

I apologise again for the disjointed nature of this post, the probably appalling grammar, and the fact it's a bit late. As usual for winter, I don't have an excess of spoons right now and I'm using up most of the energy I do have on frivolities like eating, washing, work, and my duties as an employer of PAs (more on that another time).

2010 - A Roundup

January
My PA having left on maternity leave in mid December, in January I began working with a new, temporary, cover PA. I had another ATOS medical examination for my DLA renewal which went about as smoothly as these things can. I gave up on the business support organisations that had been messing me about and got in contact with The Prince's Trust, who were much more positive and useful about things, and helped me to write a business plan.

February
On February 5th I took the plunge and declared my little business “open”. Obviously there was a lot still to be accomplished in terms of developing and marketing, but it meant I was able to start invoicing and earning little bits of money from clients I already knew. As if in reward for taking the plunge, I found out that following my medical I had been awarded DLA “indefinitely” which meant it would likely be several years before I had to go through the process again.

Then, just when I thought life couldn't get any better, Evilstevie whisked me away for a surprise Valentine's weekend, and pulled off the most beautiful, geeky, romantic proposal I ever could have wished for with twitter, automated computer activities, stunning scenery, photographs throughout, and a gorgeous diamond ring. I said yes.

March
Since this was not a proposal for the sake of being romantic, but a real engaged-to-be-married one, wedding planning started with looking at potential venues and crunching through lots of brochures. At the same time, with the business “open” and a business plan completed, I was able to properly apply for, and was assessed and approved to receive, practical and financial help from the Prince's Trust, as well as Access to Work support in the form of an appropriate powered wheelchair.

April
This April I got very much into an online event called Such Tweet Sorrow - Romeo and Juliet, set in the modern age, with the core characters “acting” in real time by posting tweets, blog entries, YouTube videos and other interactive media. Usually you go to a theatre and suspend disbelief for two hours, but this was five weeks of having six additional people popping up in my twitter feed at all hours of the day and night, and audience participation was encouraged and responded to in character. This meant that the fictional, scripted characters were just as “real” to me as many of the people I interact with online in my wider social circle.

Meanwhile the business was still at a stage of mostly waiting on other people, and the wedding planning was at a level of research research research.

May
As usual, May opened with Blogging Against Disablism Day. Becoming increasingly immersed in wedding planning, my post was entitled It's Not Bridezilla To Want Access and highlighted the ignorance shown to disabled brides by the wedding industry. On a happier wedding note, we picked a date and a venue.

I also went to vote - not that it's done any good - and the Such Tweet Sorrow event reached its conclusion.

June
In June the Awesome Wheelchair was delivered and the world opened up for me. Steve was taking a holiday from work and we were able to go on many days out to properly enjoy the summer sunshine, and even took a short trip back to Lowestoft to say hello to everyone there.

June also saw the beginning of an amazing government-backed propaganda campaign against disabled people which laid the groundwork for the increasingly severe cuts to essential services that have been being announced ever since.

July
In July we officially gave our notice to get married, which is an interview where they check all your documentation to make sure that you are who you say you are, and you're eligible to get married in the UK. We also booked our bouncy castle, started buying pirate accessories, and made our Save The Dates.

August
Another wedding-focused month. I learned how to make balloon swords, because we don't want any injuries from people bringing their own wooden/plastic/metal ones. I also went dress-shopping with Steve's mother, which was an accessibility nightmare but happily resulted in the purchase of a lovely dress at a reasonable price.

September
In September I decided to start working on layouts and discovered Google's SketchUp software. I got a bit carried away, which means that yes, on the one hand, we have a to-scale representation of the reception building, with the correct number of to-scale chairs and tables and other items of furniture, all based on real measurements, which can be moved around to try out lots of different ideas. On the other hand, it means I sunk several hours into it and now have what might be called an excessively accurate 3D colour model of all indoor and outdoor areas when really, a bit of graph paper and some post-it notes would have probably sufficed.

Away from the wedding front, I went to the Food Festival with my PA, and had a wonderful time browsing around and enjoying the atmosphere. And Carie knitted a baby!

October
In October the attacks on support and welfare for disabled people became even more definite in the Comprehensive Spending Review. One of the most shocking cuts being made is the withdrawal of DLA Mobility from people living in care homes. We also saw the severe restriction of the Independent Living Fund (with a view to its closure in the next few years), the restriction of contributions-based benefits to a period of one year, shuffles to Housing Benefit which will see many vulnerable people being split off from their informal support networks of friends and neighbours, and drastic cuts to local authority budgets which are having a direct impact on Social Services.

Due to my privileged position as the de facto housewife of a man who earns enough money to keep a roof over our heads, petrol in the car, and food in the cupboards, I am not as severely affected as some. However it is no exaggeration to say that my independence will be affected, and that if I was still on my own, it wouldn't be a question of independence or of quality of life - I would be struggling to survive, and many other people aren't as lucky as me.

November
In November Steve took a permanent job, as opposed to the contracting work he has been doing so far. It has been taking some adjustment to get used to, but it is in many ways a relief to have a regular and predictable income and it has enabled us to push forward with a few more aspects of the wedding planning. My maid of awesome, Jiva, came to see us for a visit and we arranged the cake, tried on the dress again, and made a bit more headway with the planning.

Every 2011 bride I know held their breath as Prince William and Kate Middleton announced their engagement. Eventually they named their day and along with many others I breathed a huge sigh of relief that it wasn't going to clash (and my phone buzzed with “thank goodness! not your date!” messages). We must feel sorry, though, for the people who had already planned to get married on 29th April, who are now wrangling with Bank Holiday issues, London transport/major event issues, and the risk of being rather dramatically upstaged.

December
Early December saw the arrival of Pip's new Littlun (actually a Littlunette) who I am looking forward to meeting at the wedding if not before. As usual, December was largely focused on steering Steve and myself through Christmas. We got off to a flying start - the cards were written and 90% of the presents wrapped before the halfway point - but then illness and weather started to interfere, with the result that our final Christmas card was only delivered on New Year's Eve and we still have a present lurking under the tree. I've also had PA problems - the young lady who went on her maternity leave last year didn't come back, but she also didn't resign or let me know what she was doing, so I'm grinding through the disciplinary process which is a whole drawn-out procedural mess of formal letters and hearings and paperwork that I could have done without. I also found myself writing a guest post for Where's the Benefit when David Cameron made his priorities clear in a sickening if predictable way.

Nevertheless it was a very enjoyable Christmas. We saw in the New Year with friends (although, unusually for us, without fireworks), and we're confident and ready for 2011.

Keeping Warm

I just got my blog stats and found that a lot of people have been turning up here looking for information about help with heating bills.

So, I thought I'd do a recap with information and useful links double-checked for 2010.

There are two types of help with winter heating. One is the Winter Fuel Allowance, the other is the Cold Weather Payment.

The Winter Fuel Allowance is a one-off tax free payment of between £250 and £400 per household. It is paid to everybody over the age of 60 who is normally resident in the UK. It is not means-tested and payment is automatic (Peter Stringfellow got some cheap headlines by offering to give his back). Recipients don't even have to be living in the UK during the winter - it will still be paid automatically even if the recipient is a millionaire who decides to go on an extended holiday in warmer climes for the next few months.

Winter Fuel Allowance is NOT paid to anybody under the age of 60 in any circumstances.

The Cold Weather Payment is a bit more complicated. It is a payment of £25 paid out to eligible people if there is a "period of very cold weather", which is defined as when the local temperature is recorded as below 0 degrees Celsius for seven consecutive days.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment will be made. People do not need extra heating in this circumstance as this is not considered by the government to be a period of very cold weather.

You can find out whether the government thinks your local weather has been Very Cold by using this handy DirectGov tool. Just type in your postcode and then click on the orange "Submit" button that is down and to the right.

My postcode is deemed to have had one period of Very Cold Weather during November. However I'm not eligible for any payment. You see, eligibility is rather more complicated as well.

The over-60s on pension credit get it, on top of their Winter Fuel Allowance. From there on in, it's breadline only. People on Income Support or Income-based Jobseeker's Allowance may be eligible if they also have a disability or pension premium, a disabled child, or a child under five years old. It is also available to most disabled people on Income-based Employment Support Allowance.

It is NOT paid to people on contributions-based benefits, nor is it paid to people on benefits like Disability Living Allowance or Working Tax Credits of any kind, unless they are also on those named income-based benefits and they meet the additional conditions described above.

Both types of payment are automatic - if you are eligible for it, it will be paid. The unfortunate news is that unless you're over 60, you're probably not eligible for anything.

Doctors

I had to go and see my GP today. Nothing's wrong - it's just that every so often there will be a note on my repeat prescription asking me to make an appointment for a "medication review" and then I have to attend.

Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:

Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.

The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.

A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.

The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.

And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.

So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.

Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"

To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.

So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.

Cllr Simon Button

I've been meaning to post this for a while but I kept looking at it hoping I'd imagined it. This is a scan of the front-page article of a local town council newsletter. It's the "winter 2010" issue and was delivered in mid-November.



The article complains that nobody has come forward to help Cllr Button to organise a local Fun Day. In many ways it's like every other self-important council newsletter you ever read. The bit that stands out, though, is the second paragraph on the second column, reproduced here verbatim:

"It is very sad these days that the old Winston Churchill philosophy still stands - "So much is owed by so many to so few". It seems that everybody wants these events, but nobody is prepared to help out. How sad!"

Yes, Councillor Simon Button draws a parallel between the organising of a tiny local "Fun Day" which entertains a few people for an afternoon and raises a small amount of cash for local charities... and the ultimate sacrifice made by thousands of soldiers in WWII as they fought, with their lives, to save not just the UK but the whole of Europe from the Nazi regime.

I'm not big on the politics of war but even I'd consider that kind of comparison both inappropriate and grossly offensive, especially when written for publication by a town council and even more especially when aired in November, at a time when the nation honours those who died.

The Wedding Of The Year

Please don't hate me for bringing up the Prince William/Kate Middleton/engagement thing. Yes, I know, it's already hideously overexposed. Yes, I know, you're sick of hearing about it. I'm sorry.

If it helps, this post isn't about them as such. If I wasn't in the middle of wedding planning myself, then the entirety of my response to the news of their engagement would consist of "oh, that's nice for them," and wouldn't warrant a tweet let alone a blog post.

However I have been nurturing a Bridal Brain since February, so my initial response was "oh, that's nice for them... hang on! Spring or Summer 2011?!? AIEEAAAAGH!!!" Ever since the drive home from Wales back in February, Steve and I have been planning for Spring/Summer 2011 (we've settled on a date in May) and now I am having irrational fears of our wedding being upstaged, sidelined, downplayed, faded out and all sorts of other directional diminishment.

A couple of times I very nearly tweeted "if they steal our date, I'll bloody well kill them," but recent events mean that even though I would only mean this in the figurative sense, and even though it should be apparent that someone with my physical attributes poses very little threat to a healthy Forces-trained male even without a constant bodyguard presence, it would still be a bloody stupid thing to say. So instead I went with "If they pick our wedding date, I'll... I'll... I'll be quite annoyed #IAmNotBraveEnoughToBeSpartacus" and felt like an enormous coward.

I mean, it's bad enough to end up sharing your wedding day with a major sporting event (Wimbledon, World Cup, Test Match Cricket, whatever) that your guests are going to be sneakily trying to keep track of. To clash with the hype of a major royal wedding... it doesn't bear thinking about!

The biggest problem is that, for obvious reasons, I have to spend a lot of time resting, and if I can't sleep, I tend to daydream, and my daydreams aren't always kind to me. This opened my brain to the horrific possibility that if they get married in, say, March, and they have, for the sake of argument, a pirate theme to entertain the kids who are attending, then when people come to our wedding in May and see all the pirate party bags and whatnot, then even though we bought that stuff in summer 2010, it'll look like we're trying to emulate them. Same goes for music, readings, colour schemes, dress style... it's unlikely they're going to have anything like what we've chosen, as they'll be restrained by a lot of protocol, but what if? What if our carefully planned and very personal wedding just looks like a poor imitation of the most highly publicised marriage so far this century?

I know this is irrational! I know that even if they want pirates, they won't be allowed pirates! I know none of our guests will be making comparisons! But Bridal Brain is not conducive to sane, rational thought!

.

..

...

I'll understand if anyone wants to just come back in June.

Back to work

No, not me, but Steve. We had a lovely summer together, but we also have a wedding to pay for, so after his much-needed break poor Evilstevie has trudged back to the coalface of the IT industry to earn us some beans.

It's a bit of a shock to the system, but it's also kind of nice to be settling back into the work-day routines again. I have resumed my wifely task of making him a nice packed lunch every day. "Making" is stretching the point a little as it consists of making some kind of sandwich, putting it in a box, and then adding little pre-packed snacks of varying unhealthiness (from fruit cereal bars to bacon frazzles) until the box is full. But it's something I enjoy doing, and it's something he enjoys eating, and it also gets me points with my future-mother-in-law because while Jamie Oliver would probably scream with disgust, at least it means Steve eats something during the day.

Once Steve and his snacks have gone to work, I've got the house to myself for the day, which is taking some getting used to. Obviously I've been working all along so it's not like we've been spending every waking moment together, but I'd got quite used to the way that every couple of hours one of us would decide to make a cuppa and say hello while we were at it. I'm certainly drinking less tea without him here.

The other thing I'm trying to do (although so far I've only managed it two days out of five) is to try and play on the Wii a bit each day, in the name of moving about properly and maybe even trying to get a bit of weight off pre-wedding. My favourite game for this is Just Dance, which differs from most dance games in that instead of demanding intricate footwork on a floor pad, which would see me flat on my face within about fifteen seconds, it's big movements with your arms and body - you can play it standing still, or sitting down, or on one leg or jumping about the place if that's your thing. There's also a nice warm-up session on it, which I can't manage all of, but I do my best and at least it means I've stretched a bit. Pre-disability I really enjoyed dancing, so this is good fun and the music makes it easier than doing physio in silence.

If anyone else can recommend any good Wii games that move more than just one arm, don't require good balance, and have varying levels of physical impact, please leave a comment. I wouldn't have even known about Just Dance until I happened to hear another crip mention it. I'm a little bit limited on space - 160cm between the TV and the sofa, which isn't enough for me to lie down full length - but beyond that I'm open to suggestions.

Proud of the BBC

I know I've mostly been talking about the welfare aspect of the planned cuts going on. That's because I believe that it's important for people to have the absolute basics of life - a safe place to sleep, food to eat, warm clothes to wear, necessary medical attention, the ability to develop and maintain social contact with other human beings - over and above everything else. Arts and culture is important, certainly, but I don't believe anyone could stand in front of a disabled person and say "I'm sorry you're having to choose between having your heating on and buying food this winter, but we're sure you'll feel better for knowing that the money we're saving on your benefits means that the massive art gallery down the road can stay open. And keep their heating on. You could go there every day to keep warm! Well, you could if we hadn't cut the accessible transport service..."

And the BBC has its failings. Extreme health and safety. Multiple layers of bureaucracy. Their persistent habit of sending threatening letters to houses with no television sets demanding that the licence fee be paid.

Nevertheless, I'm proud of the BBC and agree with every sentiment in this wonderful song:


I do watch TV, and I pay the licence fee, and I'm okay with that. I don't always watch BBC channels but many of the programs I like were originally developed for/by the Beeb and have been bought for repeat by other channels. I also listen to the radio/podcasts, I participate on a couple of messageboards, and I adore the BBC news website. During the Chilean miners' rescue, for instance, the BBC was a definitive source of information. It was clearly laid out, well-presented, low on sensationalism, high on commitment. The feed and the articles were being echoed around international forums as being superior to the coverage offered by other news outlets. The BBC has a lot to be proud of and in turn we can be proud of the BBC!

Mitch Benn's Proud of the BBC is available via many download sites listed here.

Alas, poor Roomba

In November 2007, Steve and I purchased a Roomba robot vacuum cleaner. In our household, it is probably the most-used domestic appliance after the kettle and the microwave. Certainly it gets used much more frequently than any of my traditional vacuum cleaners ever have (even pre-disability - I was never a great housekeeper), the happy result being that when I hit the deck I am able to just relax until I'm able to stand up, rather than lying there trying not to breathe too deeply for fear of inhaling several months' accumulation of crumbs and dirt. It's that independence thing again. If I think the carpets are too filthy to lie around on, I can just push the button and clean them rather than having to beg and pester and nag and cajole and use up favours to get someone else to do it.

Our Roomba is now very nearly three years old. And he is starting to feel the strain. He was absolutely fine until about a month ago, then one day he worked for about ten seconds and then stopped and sang his sad little song of woe. Slightly concerned, I dismantled his user-serviceable parts (oo-er) and extracted several handfuls of fluff from mechanism areas where fluff should not be. One charge cycle later, and he was fighting fit again.

A week later the same thing happened. This time Steve dismantled him rather more thoroughly and removed another handful of fluff from hard-to-reach areas. One charge cycle later, and he was cleaning the hallway with a smile. On his little non-existent face. You know what I mean.

Now we're at the stage where every time we want him to clean, he runs for anything up to a minute before stopping. Then he sings the sad little song of woe and flashes his little red light, then we reset the battery and mess about with the charger and then he cleans one room, gets back on his charging base, but still sings the little song of woe the next time we try to use him.

I fear he is on his last legs. Wheels. Whatever. He's not quite ready for that great WEEE recycling plant in the sky, but (shhh) if he was claiming DLA it would probably be under the Special Rules.

Amazingly, a Roomba 560 (same model) seems to be currently £300 in the UK (or would be if it was in stock). That's particularly upsetting as we only paid £250 for this one when we bought it three years ago! I say 'only', I mean relatively...

If anyone happens to have any bright ideas, I'm open to suggestions. My instinct says to replace the battery, but a new battery is about £60 which is rather too much for something that may or may not solve the problem. So it looks like we'll be pleading and coaxing him into occasional functionality until after the wedding and putting "new Roomba" at the top of the registry.

Abandoned claims

Woke up this morning to see that a certain right-wing rag has surpassed itself in the propaganda it chooses to spout about ESA.

I'm not going to link to it because it will only upset me and every reader.

The headline asserted that 75% of those who claim ESA are found "fit to work".

This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. The article did not split these figures. It did not differentiate between the Support (never likely to be able to work) group and the Work-Related Activity (may, with help, be able to do some jobs) groups of ESA - from reading the article it seems that they are only counting those who meet the Support group test criteria as "genuine". It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".

Legitimate reasons why an ESA claim may be started and then abandoned:

• The claimant dies.


• The claimant gets better, be it a miracle or a new treatment or being bumped up the waiting list for surgery or getting private treatment.


• The claimant, having lost their job, is offered support and a place to stay by their parents or their children. They decide to abandon their claim and re-start it once their move is complete.


• The claimant looks at the highly personal questions on the form and says "you know what, I'll never be this desperate for money, prostitution is less demeaning."


• The claimant wins an insurance or compensation payout that enables them to survive without benefits.


• Due to their condition, the claimant is unable to understand the importance of filling in the form or unable to remember that the form needs doing.


• Due to their condition, the claimant is unable to fill out the forms - perhaps they have a brain injury or learning disability and cannot read and/or write, perhaps they have issues with their hands and cannot physically hold a pen, perhaps they have a mental health condition that causes panic attacks every time they approach the form.


• Due to their condition, the claimant is unable to access support to fill in the forms - for instance they are unable to go out, they do not yet have formal Social Services support, and their CAB is overstretched with permanently engaged phone lines (I have personal experience of urgently needing to get to the CAB but having to wait until support is available).


• The claimant completed the form, but due to their condition, they are unable to travel to and from the medical examination centre alone, and they are unable to secure help and/or funding to allow them to attend. Because their level of impairment does not exist until ATOS say it does, this is not a valid excuse for non-attendance. (I had this issue with my DLA a few years ago).


• The claimant is sitting at home with the heating off, desperately waiting to hear back from the DWP about their claim, which the DWP has lost.

If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.

If you want to imagine the future...

In my last post I spoke about how, thanks to my particularly fortunate circumstances, I should not be too severely affected by the proposed cuts in the Coalition's Comprehensive Spending Review.

I wrote that in the same frame of mind as a parent might hug their warm, safe, living children after hearing about a fatal school bus accident. It's okay. I'm okay. The bad things happened to someone else. It's terrible, but it was someone else.

That emotion dealt with, it's time to acknowledge that I am not so unaffected as I would like to believe. This is difficult for me to post as it involves hard truths not just about my condition but also my business and my relationship, but Bendygirl's video has persuaded me that it needs to be said.

Hard truth #1 is that I am dependent, physically and financially, on my partner. I contribute to the household in the ways that I can, but ultimately, he's providing for me.

I work, yes. I worked for a company for just over two years and now I've been self-employed for about eight months. I have a growing base of satisfied customers, I pay National Insurance, I will be doing a tax return, and each month, the business expenses are met with a bit left over. Go me!

Unfortunately, much as I hate to admit it, hard truth #2 is that the bit left over isn't a very big bit, and nor were my earnings while I was PAYE. It's always been well under £8,000 per year. I simply can't work very many hours and I'm not in a position to raise my rates.

So the long and short of it is that if my relationship fails, meaning that I am no longer housed and supported by someone else, I will have to wind up the business and seek help from the state until such time as I am able to find employment that pays enough for me to live on without demanding more than I am physically able to give.

A lovely big squishy truth now - my relationship is fine. That's why we're planning a wedding. Excuse me while I cuddle that truth for a little while.

I do feel, though, that part of what makes the relationship fine is that we both know we could leave at any time. I'm not with him just because he can pay the bills. We started our relationship in the knowledge that we can both survive as single adults - we choose to be together, every single day. It's not nice to think of exit strategies, but at least I knew that if something unthinkable happened - for example, if he were to hit me or to announce that he was leaving - I would be able to get a taxi to a friend's house and then start phoning Social Services for support. I would be able to claim money for food on an emergency basis, I would have a few hundred quid in savings to see me through for the first week or so, I would have help to apply for income replacement benefits, and thanks to my DLA status I would have to be put in appropriate accommodation.

This is no longer the case.

The Coalition are aiming to reduce the number of DLA claimants by 20% (600,000 people). That's all very well, but the rate of fraud on that particular benefit is just 0.5% (about 15,000 people), which means that there are 585,000 people who are legitimately claiming, whose conditions have not changed, and yet who are going to get kicked off a benefit which is frankly a lifeline. Believe me when I say the bar is already set quite high for who can and cannot get DLA - it's not awarded for minor illnesses. Remember the official disability facts and figures? There are 11 million disabled people in the UK and yet only 3 million of them get DLA. Long-time readers will remember all the trouble I had with my DLA appeal a couple of years ago. Spending the best part of a year trying to fight the system while also trying to cope without the money. It's not to be had for the asking.

(It should also be reiterated that this shifting of the goalposts purely a cost-cutting exercise. DLA has nothing to do with whether a person works or not. Many DLA claimants are in work and paying tax. In many cases, it is their award of DLA that allows them to buy the care and equipment that enables them to continue working.)

If I were to lose my DLA, it's not just the money that would disappear. All sorts of things go with it - daft stuff you wouldn't necessarily think of, like help getting your water if there's an emergency and your street is put on a standpipe, or eligibility for things like Disabled Person's Railcards.

Let's be positive, though, and assume I keep it. Next, I'd need income replacement benefit. This would be ESA, the benefit that is being phased in to replace the old Incapacity Benefit. ESA divides into two groups. One is for people who are never likely to be able to work - mostly people with terminal illnesses with only a few months left to live. This group get full and unconditional benefit for as long as they are ill (in other words, until they die or a miracle occurs). It's a small group - currently about 6% of claimants. The other group is for those who, with support, would be capable of some work, and their receipt of the benefit is dependent on them fulfilling "work-related activities" such as voluntary placements or work experience placements...

Actually that's not quite true. There's a third group for ESA. The third group is those very definitely disabled people whose conditions don't quite fit the boxes. Those with fluctuating conditions. Those who would be considered capable of "mobilising" fifty metres if they had an appropriate wheelchair, even if they do not in fact have such a wheelchair, nor any way of obtaining one. These people are put onto normal Jobseekers' Allowance with all the hoops and hurdles thereof, and drop out of all disability monitoring at the DWP. No specialist support. No reasonable adjustments. Just sanctions if you do not sign on or if you do not apply for enough jobs.

Assume, then, that I would get either work-related activity ESA, or that I would be discarded onto JSA. Finally, I have to find somewhere to live, and this is where it gets really tricky.

First of all, as a person under 35 I would only be eligible for a room in a shared house. Sharing a house is a tricky prospect for a disabled person. You need the people you live with to be able to understand about your disability. You need them to understand, even when drunk, that your mobility aids and assistive items aren't their toys and that you really do need a proper sleep schedule. You need to be able to get help to fulfil your share of the chores, and Social Services do not provide help with housework for people who live with "able-bodied adults". I wouldn't last five minutes.

Of course, you also might need certain adaptations to the property. That's expensive and I doubt councils will fund much of it. So maybe that would mean not having to enter a house-share because it's not physically appropriate. Which means we're looking at temporary accommodation in (a) a hospital or (b) a hotel with an accessible room. It could happen, but it'd be expensive. Perhaps a better solution would be care homes? I don't require nursing care, but it would be a room, and it would be accessible, and the other people would understand my situation.

Heh. Well, yes. That's a solution. It's already a solution for many people. Live in a care home. They remove all your income replacement benefit, and they remove all of your DLA care component, and then they give you £20 a week of "pocket money" to cover anything that's not basic food and bills. Shampoo, conditioner, deodorant, makeup? Pocket money. Clothes and shoes? Pocket money. A laptop computer to enable you to communicate with the world? Pocket money. These things could be considered luxuries, but would YOU employ someone without them?

DLA mobility component is different. People can use that however they see fit. Some people hand it all over and get a leased Motability adapted vehicle. Some people use it to hire or purchase a mobility scooter. Some people use it to cover the difference between what the NHS will pay for a wheelchair, and the price of a wheelchair they can actually use. Some people pool it with others in their care homes to fund an accessible minibus. Some people keep it and use it for taxi fares so that they can do things like, ooh, go into town and sign on or do Work Related Activity as part of their ESA/JSA requirements.

The Coalition intend to axe DLA mobility component for people in care homes. Adapted cars, taxi fares, and in many cases, wheelchairs, GONE. When challenged, the government said that local authorities should be providing transport and daytime activities for disabled people in care homes. These would be the same local authorities who have been told to reduce their spending by 25%...

So if the Coalition's plans are successful, then for the next seven years at least (until I am 35), my choices are to stay with Steve, or to attempt to bounce on a welfare safety net that will be so small as to be negligible. Can I still honestly say that we live together out of choice, when my best case breakup scenario will be either virtual imprisonment in a care home, or living out of a suitcase in a cheap hotel? Ironically, the additional pressure this puts on my relationship only increases the chance of it turning sour. And since neither of those situations are going to enable me to pick up the threads of my life and move towards getting back into employment, it makes me even more likely to remain benefit-dependent for longer.

I say again, for myself as much as for the people reading this, that my relationship with Steve is stable and loving and going nowhere. In that respect I am more lucky than many disabled people who find themselves increasingly dependent on their partners. But one thing you learn with adulthood-acquired disability is that life can change in an instant - I'm scared that the safety net which caught me once, and which I may rely on to catch me again, is being removed.

Cuts

I want to post about the cuts made in the Comprehensive Spending Review yesterday.

I'm not doing so well at the moment, so for the sake of spoons this is going to be short and based on my own experiences rather than linking to statistics and documentation. That in itself is part of what makes the cuts to disabled people so underhanded - we're not all able to fight back in a planned, structured and comprehensive manner.

Personally, at this point in my life, I probably won't be too badly affected for a couple of years. Oh, there are things that I should have that are now disappeared into the long grass, but my extremely fortunate circumstances mean I am not being thrust into heat-or-eat poverty. I know just how lucky I am and I know many others will not be so lucky.

What happened to me was not unusual. One week, I was a reasonably healthy, reasonably fit, reasonably bright young woman with a reasonably well-paid job, reasonable promotion prospects, living in a small but reasonably pleasant bedsit flat and, all in all, living a reasonable life. The following week, I was being sent home from work with what was assumed to be 'flu. Three months and half a dozen failed attempts to return to work later, I was being prepared to accept that my illness might be rather more long-term, and three months after that, my work contract was ended and I was obliged to claim welfare benefits to survive.

I did survive. It wasn't without difficulty, what savings I had were eroded, and I don't know how long I would have kept it up - let's not pretend we lived like princes under New Labour - but I had practical support, an intact National Insurance record, and the wherewithal to challenge the DWP when they cocked up their own rules, and so here I am. I landed on the welfare safety net, but I bounced, and a few years later with a lot of help from loved ones I was able to start earning again.

However I feel very sorry for anyone who goes through that same not-unusual scenario with ESA (thanks to Labour for that) and the cuts proposed by the Conservative/Liberal alliance yesterday. I would not have survived.

The harshest cut? Removing DLA mobility allowance from disabled people who live in residential homes. This is the money that goes towards the difference between what the NHS will pay for a wheelchair and what a suitable wheelchair actually costs. This is the money that pays for taxis to visit friends and family. This is the money that residents pool together to get an accessible minibus for their home so that they can have trips out. I do not understand the rationale for removing it.

SketchUp

I've been playing with another Google toy that I never knew existed. This time, it's SketchUp - a 3d modelling/design program. I discovered it while trying to make a start on the room layouts for the wedding.

My previous experience with 3d computer design begins and ends with The Sims. This is pretty much like someone saying their experience of English literature begins and ends with having read Peter Andre's autobiography - technically it's a book and it involves skills like the turning of pages and the reading of words, but.

Nevertheless, SketchUp is very easy to use and Google have done their usual thing of short, helpful video tutorials. Within a couple of hours, I had produced this:


That's a proper size layout of the room where the reception will be held, complete with the correctly-measured tables, chairs, sofas, bar unit and so on created from scratch (Google do have a "3D warehouse" of ready-made objects but I was having fun). At the moment I'm still populating the room with the various items it needs to contain. Then we'll be able to shuffle them about until we're happy.

Yes, I know I could do this with paper. In fact I bought a pad of graph paper for this very purpose. But a computerised layout won't scatter everywhere as soon as there is a breeze, and I can delete and move lines without making it messy. Plus, I can view it in 3d and in all sizes.

I know it's not exactly *pretty* at the moment, but there is the potential within the program to add colours and textures and shadows and whatnot. I think if I go too far with that my poor little computer might fall over, though, so we'll get the basic layout sorted and saved and then play about with details.

The Hawking Comparison

As the government's attacks on welfare claimants increase, stupid and offensive comments about disabled people are being repeated more and more often. The one which is bothering me today goes something along the lines of:

"That Stephen Hawking bloke earns his own living, therefore benefits should only be given to people who are more disabled than he is."

Yes, that Stephen Hawking bloke does earn his own living, and all power to him for that. However:

1. He is a bona-fide 100% genius, and was already recognised as a genius before his illness was affecting him.

2. Quite possibly because of that genius, he has had access to custom-made adaptive and assistive technology FAR above and beyond the norm. Professor Hawking was using technology in the 80s that is not necessarily available to people with the same condition even today.

3. If the genius aspect was removed - if instead of being Professor Stephen Hawking, PhD, CBE, FRS and however much else of the alphabet you feel like adding, we just had Steve Hawking with seven mediocre GCSEs from the local comp and a bronze swimming certificate - how employable would he be? If the man who holds the workings of the universe in his head were to express an interest in coming to give a lecture at your nearest college or university, it's a fair bet that they would scramble to provide wheelchair access to as much of the campus as possible and make every other adjustment asked for in terms of allowing extra time, ensuring appropriate parking space, and whatever else is in his 'rider'. Would they do the same for someone who had applied for the minimum-wage caretaker's position?

Professor Hawking is a remarkable man and as such he is the exception, not the rule. The only possible answer to "Stephen Hawking has a job, why don't you?" goes something along the lines of "Stephen Hawking has written several best-selling books explaining scientific mysteries which have baffled the finest minds for centuries - why haven't you?"

It's one thing to aspire to the achievements of the most amazing people ever to have lived, but quite another to take them as a benchmark for what is expected of us.

Wedding dress!

Short version for the easily bored: I bought my wedding dress. No, there aren't any pictures.

Long waffly version:
I wasn't expecting to have bought my dress already. Truth be known, I thought it was a process that would take months. But, I felt I should start that process sooner rather than later, so my Future Mother-In-Law (FMIL) and I decided that we would begin dress-hunting once she returned from her summer holiday. While we weren't averse to the idea of second-hand or internet-ordering, we felt it would be a sensible start to try on a few different styles and see what worked on me.

The first issue I had to sort out was the extremely limited access to bridal shops. I phoned all of the ones I could find listed locally. None of the ones in my home town were wheelchair-accessible and only one, maybe two, in the next town over were able to tell me that they had access. Not to be put off, I made August appointments with both of those. One of them cancelled, so eventually we just went to the one remaining shop, which was Eternal Bride in Warwick.

They were lovely. I don't think they were experienced with disability issues and it would have been tricky to get through the store if I was using a more typical bulky type of powered wheelchair, but they were friendly, polite, non-intrusive, and made every effort to accommodate me. I was impressed.

They even managed the Holy Grail of assistance - they asked me what I needed and then they paid attention to my answers.

We tried on loads of different shapes and styles of dresses from the racks and got a really good idea of what works well, and what I should avoid. Then I had a bit of a rest while FMIL and Debbie (the member of staff helping us) went upstairs to look through the sale dresses (three-figure price tags rather than four). They came back with about six dresses, all of which I probably would have chosen myself at that point. And once they'd been tried on, one of them was considerably nicer than the others...

Unfortunately it was a discontinued style so I couldn't simply plan to order it nearer the time, and, due to the fact a huge train skirt won't work with the wheelchair, it would have required some £150 of alterations on top of the not-inconsiderable price of the dress itself. I was tempted, but felt that I should not spend that kind of money without thinking about it, consulting Steve, and going to more than one shop. Debbie very kindly agreed to hold it for us for a few days and FMIL and I started frantically trying to find somewhere else to try dresses.

Since the biggest issue with the dresses in Eternal Bride had been the huge floofy skirts and trains, we decided that our best bet would be to try a department store. We figured this would carry outfits that were more "cream-coloured formalwear" than actual bridal gowns, and perhaps have a more modest price tag. Monsoon, for instance, used to carry a small range of dresses that would be equally suitable on a low-key bride, a grownup taking First Communion, or someone attending a prom. I'd already had a look around local department stores with this in mind, but hadn't found anything, so it was back to the phones. It seems that many department stores now only carry a bridal range at their flagship stores, but I was able to make an appointment at House of Fraser in Birmingham.

Advice: don't bother. It was all £1,000-plus floofy dresses with huge trains, and an added rather baffling feature was that many of the dresses had SHARP beading and sequins under the arms - I didn't even wheel anywhere but after half an hour of trying-on I had loads of angry red marks and scratches on my inside upper arms. Dejected, FMIL and I met up with Steve for lunch in the Bullring, where we spotted Sonique.

Sonique mainly do prom dresses, or to put it another way, they have a huge range of formalwear, in colours including white shades, many of which do not have trains and do not floof out by a metre or more. They're also that bit more affordable. And the staff know their stuff - rather than having us rummage through all of the hundreds of dresses in the store, the lady we spoke to listened to our list of features we liked and disliked and then picked two dresses off the racks and invited us to come and try them on.

Sonique are not champions of accessibility. Like every other store in the Bullring, they have level access built in from the word go, and they have kept their aisles uncluttered. However the changing cubicles are one-person size with no seat and solid swing doors, which meant that since I needed physical help getting into the dresses, I was basically expected to take my top off and then stand propped in the corner of a cubicle with the door open while the assistant got the dress over my head and did it up. I still had my jeans on underneath and I wasn't feeling very impressed...

... then I turned around, saw my reflection in the big mirror, and had the fabled "this is my dress" moment. While I stood there gobsmacked, stick in one hand and doorframe in the other, the assistant looped a matching wrap around my arms and it was perfect.

Trying not to get overexcited, but no longer so bothered about the lack of privacy, I got rid of my boots and jeans and carefully sat down in my wheelchair. It was still perfect. I could still move my arms. I could still breathe and lean and twist as much as I usually can and it wasn't at risk of tangling in the wheels. I stood up again. It was even the right length, and it didn't interfere with where I need my stick to be.

I tried on the other dress, just to be certain that it wasn't simply a case of me being relieved that I was trying on a dress that was comfortable. Nope. The second dress was nice enough as dresses go, but not WOW nice. I put the first dress back on. Miles better.

After a bit of consideration, FMIL and I decided that we'd tried on a truckload of dresses, this was the best one by far, we weren't likely to top it unless we got into the realm of full-on bespoke dresses and even then it wasn't guaranteed... so I bought it.

I'm not at liberty to disclose any major details about it (if Steve finds out what it looks like, FMIL will kill us both) although if anyone's interested, compared against a Dulux colour chart the nearest matching shade is "chalk burst".

I was a little bit anxious about phoning Eternal Bride to tell them I wasn't buying my dress from them after all, but they continued to impress me with her polite, friendly, professional approach and I really can't praise them enough. Even though it was Sonique who happened to stock the actual dress I chose, it was Eternal Bride, and particularly Debbie, who made wedding dress shopping a fun and accessible experience for me, and I'd recommend them to anyone.

Done/arranged/have a PLN:
Registrars
Venue
Food and drink
Photography
Bouncy castle
Balloon swords
Hair (sort of, I have a stylist but not a style) and makeup
Gloves (in progress)
Dress!

Still not even properly thought about:
Ceremony options
Rings
Invitations
All the flowers
Decorative balloons
Shoes, lingerie and jewellery
Nice walking stick
Table decorations
Venue floor plan

Your opinion does not change reality

Yesterday I was reading an article by Naomi Jacobs that pondered a recent piece of research by Scope. According to the Scope research, 91% of Britons say that they believe disabled people should have the same opportunities as everyone else - yet 90% said that they had never had a disabled person come to their house socially.

Naomi pointed out that there are 11m disabled people in the UK and that this dissonance may be due to a poor understanding of disability issues. Yes, marginalisation of disabled people happens, for all sorts of reasons from prejudice and fear to physical access issues. But many people may well have worked with or socialised with a disabled person unknowingly, without understanding what "disabled" actually IS.

This was proved almost instantly in the comments with claims that there "can't be" that many disabled people, almost entirely on the basis that "it doesn't feel right."

Now, okay, CIF articles attract a lot of comments from people who are misinformed (or just trying to be antagonistic). However, Naomi had actually linked to a short and comprehensive document of Disability Facts and Figures(PDF) from the Papworth Trust, it's just nobody had bothered to click on it.

So. Some little summaries.

11 million disabled people in the UK:
6.9 million of working age
770,000 under 16 (83% of disabled people acquired disability during their working lives)
3.4 million people over retirement age.

1.2 million people in the UK are wheelchair users, which for many people is still the definition of disabled. However only 28% of these (about 336,000) are under 60. People often find it easier to accept that an older person may have impairments and often insist that these people "don't count" as disabled.

So if we take the common perception of disability as only applying to people of working age who are wheelchair users... that's about 0.5% of the UK population, a figure I am sure the naysayers would find much more palatable.

However, the DDA definition of disability is

“A physical or mental impairment which has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities.”

This means that as well as covering physical impairments that are visibly obvious to the layman such as the loss of a limb, it also covers everyone with less obvious but disablingly severe conditions such as learning difficulties, sight loss, hearing impairments, and mental health problems. Furthermore:

Medication or equipment (such as an artificial limb) which helps an impairment, is not taken into account when considering whether an impairment has a substantial effect.

Which means that the DDA also covers all the unnoticeable people walking around with conditions like epilepsy or diabetes or heart conditions, who with their medications are perfectly able to live entirely normal lives, but without their medications, would be hospitalised or dead.

All of a sudden, the 11m figure seems remarkably low. We're not "all a little bit disabled" (having to go to bed with a headache once in a while is not a substantial or long-term effect) but we probably all encounter disability much more than we think we do.


Endnote: Please bear in mind that the DDA definition of disability is very different to the one used for assessing disability benefits - for starters, benefits assessments assume that you have taken all your medication and that you have all the access equipment you could wish for (see the imaginary wheelchairs fiasco). So 11m disabled people does not mean 11m benefits claimants.

The Scope research was by ComRes and apparently used a statistically viable sample of GB adults that was weighted to be demographically representative, and 91% of them said disabled people should have the same opportunities as anyone else. Yet according to other research, this positive attitude is not carried through into reality. For example, a 2009 YouGovStone survey on behalf of IOSH (Institution of Occupational Safety and Health) found that 73% of employers would not even consider hiring an older or disabled person and would therefore actively deny disabled people those opportunities. It was spun it as "27% of employers would consider hiring an older or disabled person," as if it's somehow praiseworthy that a whole quarter of employers are prepared to consider meeting their basic legal obligations. We've got a way to go.

Pointless Invention

Today I saw what is possibly the most pointless piece of "time-saving" technology ever.

Sainsburys are trialling Prescription Vending Machines. You log in with your fingerprint and/or ID number, put your prescription into the machine, and get your drugs out.

On the face of it, wonderful. I get pretty much the same incredibly common drugs every four weeks and it would save me about twenty minutes a month if I could insert my prescription into a slot with one hand and pick up my tablets with the other.

Then I saw this BBC piece on how it actually works (that link goes to a video piece, I haven't yet found a written article). I'll do a step-by-step description, with what happens when I use the human pharmacy in italic text and the way the machine works in bold.

I go to the pharmacy counter, write the date and sign the prescription form, and hand it to a pharmacy worker (not the pharmacist) who tells me how long it is likely to take. If it's five minutes, I hang around and wait, if it's half an hour they give me a collection ticket and I'll find something else to do and come back later.
I go to the pharmacy vending machine, write the date and sign the prescription form. I mess about for a little while logging into the system (assuming I'm at a height where I can see the screen, and have a level of vision which allows me to see and use a touch-screen interface). Then I put my prescription into a special envelope (assuming there's nothing wrong with my hands)and post it into the little slot. The machine prints off a collection ticket telling me how long I will have to wait.

So far, the machine is taking longer. But what happens next is even better - and it ensures that the wait will never be as short as five minutes. Let's assume my waiting time is 30 minutes and I've wandered off...

The pharmacy assistant places my prescription at the back of a prescriptions box. The pharmacist himself is taking prescriptions from the front and dealing with them one by one. Eventually he gets to mine. He enters my prescriptions into the computer, to make sure none of them clash (this extra layer of checking by a fresh person and a separate computer is why GPs don't tend to give out drugs directly), measures out the drugs, puts them into a paper bag, seals it with a label with my name and NHS number printed on it, and places it onto a shelf which I believe is organised alphabetically for last name.
The pharmacist at the back of the machine - yes, the machine is dependent on a human being at the back of it - retrieves my special envelope, opens it, and takes out my prescription. He enters my prescriptions into the computer (is this sounding familiar yet?), measures out the drugs, puts them into a plastic baggie with my name and NHS number printed on it, and places this into the machine, which may or may not be organised alphabetically, who knows?

Yes, in true mechanical Turk style, there's still an actual qualified pharmacist doing all the actual work. The machine is just a glorified drop-box. So far the processing system is no more automated than it's been for the last ten years or so. They've just added an extra layer of ID-checking that's going to make it difficult for shorter people, people using wheelchairs, people who have trouble with their hands, people who can't see or use touch-screens, and people who are too ill to come out to collect prescriptions and have to send a friend or assistant. I bet the thing talks as well, just to exclude those with impaired hearing/auditory processing too - they might as well try and get the full house.

Anyway, half an hour or more passes and I come back to the pharmacy...

I confirm my name to the pharmacy assistant. They retrieve my bag of drugs from the shelf of prepared prescriptions, ask me to confirm my address and date of birth, and hand it over. They will advise me of any clashes (for instance that antibiotics reduce the effectiveness of the contraceptive pill) and then off I go.
I log in to the system again, assuming as before that I am able to do such a thing. The machine retrieves my bag of drugs from the high-tech shelf inside, and pushes it into the collection chamber with a little note telling me of any clashes. I open the collection chamber, retrieve my tablets, and off I go.

So it takes longer and is no more reliable than the current system, even assuming that there are no mechanical or software issues with the machines - self-checkout, anyone? Nevertheless their claim that it will enable people to skip the queues is probably correct, as the sick or disabled people unable to use the machine will still be queuing at the normal pharmacy. It's not even as if they'll save that much on staffing costs, as the machine still requires a pharmacist to do the bulk of the work and presumably an operator to empty, fill and maintain the thing.

I love technology but I really cannot see the point of this one.

Credit profiling and benefit claimants

I'm sure everyone has by now seen the articles about David Cameron's latest crackdown on benefits claimants, with plans to pay private companies to rummage through claimants' accounts. I'd refer to his crackdown "on benefits cheats" but that's not really true - benefit fraud, particularly for disability benefit, is at less than 1%, which means that for every one fraudster he cracks down on, 99 genuine claimants, already dealing with poverty, sickness, disability, job loss and whatever other issues have led to them legitimately being on benefits, are being terrified and harassed. He's attacking claimants.

More money is lost through administrative error than through fraud. So it's interesting that Mr Cameron's plan of attack involves rummaging through the personal affairs of claimants rather than training his staff at the DWP and Tax Credits units to make fewer mistakes. Surely staff training is cheaper than investigating millions of claimants?

According to the Citizen's Advice Bureau, there's about £17bn of benefit that is unclaimed because people either don't know they're entitled to it, or can't deal with the application/appeals processes. Perhaps Mr Cameron is aiming to increase the unclaimed benefit with his campaign of "if you claim anything, we're going to have our grubby little paws all over your bank accounts and make your life a misery."

I'm very relieved to not be on means-tested benefits any more (I get DLA but that's for disability-related expenses such as mobility equipment, and not dependent on earnings or work status), as I almost certainly would have had a credit profile with red flags. The most regular things I bought on my credit/debit cards while living alone on IB and HB/CTB were:

- grocery shopping for more than one person and including baby stuff like clothing, food and nappies. (While I lived in Lowestoft, friends who drove would give me a lift to the supermarket. In order to take advantage of multi-buy offers and "spend £100 and get a voucher for cheaper petrol" offers, I'd pay for all our combined shopping in one go on my credit card, and then we'd split it up and sort out the cash when we got home.)

- lots of petrol, plus various car repairs and accessories. (I can't drive, but I often bought petrol for friends who drove me places and wouldn't accept any cash, and for Pip I also covered minor repairs on his car because without it I lost a lot of mobility).

I'd also occasionally buy larger or more expensive items for friends who didn't have the credit card/internet access combination at their disposal. They'd give me the cash, I'd order their (whatever), and it would be delivered to my address - because I was in most of the time anyway, and unlike the post office, they could collect from my flat outside working hours.

So I probably credit-profiled as a car owner/driver who shopped for a household of two or three adults and one or two young children and who had a reasonably high amount of disposable income for personal electronics. Which would be rather at odds with my claim to be a single disabled person, in a tiny one-bedroom flat, too ill to drive, no kids, and a low income.

It's just as well I'm not on IB any more otherwise they would have wasted a *lot* of time investigating me. But these sorts of informal money-saving measures are common amongst people on low incomes or with limited resources.

The other thing that tickled me was the idea that they will be looking for people spending money on gardening or DIY. You show me a person with a long-term medical condition and I'll show you a person who has been told by at least three medical professionals that they should try a spot of gardening by way of occupational therapy.

Geek/crip crossover

I just know that a lot of the readers of this blog will appreciate today's XKCD, even if they don't already follow it.


Description: A person saying "The sleep deprivation madness worsens. Things seem unreal. Am I even awake? Maybe I'm dreaming."
The person approaches a tree with a squirrel climbing on it. The person says "I'm pretty sure I'm hallucinating this tree. But what if I'm hallucinating that I'm hallucinating and I'm actually totally sane?"
The squirrel replies "Listen. I wouldn't worry about that."

XKCD usually adds an extra comment or punchline as alt-text. Today's is "I'm not listening to you. I mean, what does a SQUIRREL know about mental health?"

I loved this strip on so many levels. It's a perfect depiction of the kind of existential worry that you only encounter when you're sleep-deprived and/or drugged up to the eyeballs, when your grip on reality is slightly fuzzed and you start to ponder the nature of reality... after all, if I am hallucinating, I will be the last person to know that my hallucinations aren't real because they'll originate from my own brain! Maybe I'm hallucinating Steve, or hallucinating the internet...

(That's what usually settles it for me. I could not possibly hallucinate even half the stuff I see online.)

(edit for picture width, although I'm still not sure I've done it right.)

Loop

Problem: In pain.
Solution: Take painkillers.

Problem: Cannot take painkillers on empty stomach.
Solution: Eat something.

Problem: Cannot prepare meal, even microwave meal, while in this kind of pain.
Solution: Eat something small that does not require preparation - a couple of biscuits, a bag of crisps, a slice of bread.

Problem: That is not a balanced diet, and if you don't eat the 'proper' food in the fridge, it will go off and you will be wasting money and killing the planet and what about the Starving Children In Africa.
Solution: Eat 'proper' meals as well, including meat/protein, fruit/vegetables, dairy products, and rice/pasta/potatoes.

Problem: Eating more calories than I burn. Cannot afford to buy whole new wardrobe.
Solution: Cut out snacking between meals.

Problem: Cannot take painkillers on empty stomach.

It annoys me that after six years I still get stuck in this loop on such a regular basis.