Cake (picture-heavy)

For reasons too complicated to explain, I found myself committed to baking a cake for a friend in another country who isn't going to be here to eat it any time soon. The only relevant part of the backstory is that I was meant to make a cake some months ago and made a bloody great mess on the floor instead. It's almost like I got DLA for a reason.

Nevertheless.

Part One was done in advance. I found a recipe, of the sort that tells the cook to get an adult to help them with the oven, and went and bought the stuff I'd need.

I think eggs and butter were the only things I had in the house anyway, and I didn't have enough of either, so I purchased the whole recipe. Using mostly supermarket-own-brand ingredients this came to about £15. Admittedly I have a lot of stuff left over - flour, sugar, icing sugar, vanilla essence - but I'm really unlikely to use any of it. Even if we just add up the things that were entirely used up it comes to over £8. It would definitely have been cheaper, in monetary terms, to just buy a cake.

Nevertheless, again. This is not about eating cake. This is about making a cake.

Greasing the cake tin wasn’t too traumatic. Measuring ingredients was a bit okay if a little messy at points. Creaming the butter and sugar brought me back to that whole "DLA for a reason" thing. But that's okay, because the difference between making a cake and cooking a meal is that I can take as long as I like to make a cake, and it doesn't matter if it's the only thing I do today (I will now stop banging on about DLA. I'm just always worried, when I post about my biannual adventures in cookery, that someone's going to try and use it to report me).

Adding the eggs to the butter and sugar was… well it started okay and then I thought it looked a bit lumpy, but no matter how much I stirred the lumps wouldn’t go away, so I figured, it’s butter, it’ll have to melt when it cooks if nothing else, and pressed on, adding a tidge of vanilla essence, a tidge of milk, and the sifted cocoa and self-raising flour.

The resulting dough was tasty… uh, did I say tasty? I meant it looked tasty. Yes. Looked. Having no great cake-making expertise I did wonder whether it was meant to be dough. If it was meant to be batter then I’d done something really badly wrong at the measuring stage. But I was too messy to Google it, or to take pictures and ask Twitter. So I kept going.

Wrangling the wodge of dough from the mixing bowl was awkward, and then it kind of sat in a big sticky messy lump in the middle of the cake tin. It didn't really look like any kind of proto-cake so I sort of splatted it out a bit. Not squished it flat or anything, but made it a bit more circular and more evenly shaped. I probably should have taken a picture before it went into the oven, but it was already in the oven when I realised that, and even I know you're not allowed to keep opening it.

The time it took to bake was longer than the time I needed to find instructional videos on how to check a cake is done and how to get it out of the tin. I have a springform cake tin with a removable base, so getting the cake onto the cooling rack was remarkably easy. A couple of people have already expressed jealousy about my cake tin. Seriously, it cost less than the cake ingredients. If you enjoy baking, and are frustrated by normal tins, then just get one.

And lo! Cake! Properly baked, not dry, not burnt, not soggy!


There was, however, one small problem.

At just an inch and a half in height, the stage of the recipe that called for cutting the entire cake in half horizontally was going to be more of a challenge than this novice could handle. Happily, I'd been looking for a way to avoid that particular challenge anyway, so it didn't take me too long to decide that actually, I'd just cut the cake in half the easy way, and stack the halves into a semicircular cake.

I mixed up the filling and while that was chilling in the fridge, I had my lunch:


It was very tasty.

Finally, it was time to assemble the cake.

From this side it pretty much looks like chocolate mousse with cake somewhere in the middle...


... but from the other side it looks much more cakelike.


If I was doing it again, I would probably try and get a smaller cake tin. I also think that while the whole raspberries look good on the top, for inside the cake, making it a sandwich of chocolate filling on one side and raspberry jam on the other would work better than thick chocolate filling with whole raspberries added.

I have a great sense of accomplishment for having successfully made a cake. All things considered, though, I probably won't be doing it again. The cost of ingredients, the pain, the time, the cleanup, are just all too much for what's basically a pretty mediocre cake. In future I will continue to outsource all of my cake requirements to the lovely experts at Sweet As.

Eden Project - Time of Gifts

(picture heavy)

Steve recently finished what I shall tactfully describe as a "gruelling" work contract (and yes, that is putting it mildly) which took a toll on both of us, and we decided that we were owed a little break before getting into the fun of preparing for Christmas and trying to figure out where our life goes next.

Given a free choice of anywhere to go, nine times out of ten I will pick the Eden Project (the tenth time I will beg to stay in bed and be brought cups of tea). In the last year we've been to Cornwall three times, and on each occasion we've visited the Project for two or three days, and I still always feel sad to leave.

Last time we went was in May, when it looked like this:


In November, even inside the Biomes, it's more like this:


I still get a great sense of peacefulness and well-being from the Project. And the access. Oh, the access. No being sent round the back, no staff tutting at you if you can't keep up, no "special" holding pens areas, no leaving you sitting by the bins while they try to find out if anyone knows where the keys for the service lift have got to. Universal design, access is front doors and main paths all the way. The slopes can be a bit of a workout and there is a certain amount of mileage involved in getting around the place, but they have scooters and powerchairs which can be booked in advance. November being the off-season, they weren't all booked out, so at the gate I was politely offered the option of using one of their powerchairs "if it would be easier." More importantly, my choice of sticking with my own chair was accepted without fuss.

As he tends to, Steve took hundreds of photographs of all sorts of beautiful plants, flowers, sculptures and suchlike, and I'm sure soon he'll load them up to his Flickr stream which will be much better than me trying to describe. But he's let me pop a few onto my own Flickr stream so that I can blog this.

The second day of our stay, the Friday, was the beginning of the winter celebrations at Eden, which they call the "Time of Gifts". There is, of course, a Father Christmas with a cohort of elves and a stable full of actual reindeer, much of which is centred around the Sami people of Northern Europe. I was more interested in the goings-on within the Mediterranean Biome, though - storytelling, music and craft activities particularly. There are definitely worse things to do on a Friday afternoon than to sit and make Christmas decorations and chat with a bunch of friendly strangers, listening to live music and surrounded by the gorgeous smells of Mediterranean plants. As it got darker, Steve returned from his photography spree and brought me a hot chocolate to warm me up while we listened to the evening story and music.



Then it was time to leave the Biome and get ready for the lantern parade. There were large sculpture lanterns being carried mostly by staff and volunteers, but anyone who wanted could join in the parade with a pyramid-shaped lantern on a stick, with a candle inside it. Anywhere else, I'd have assumed I couldn't participate. At Eden, no one batted an eyelid. So here I am, in front of the big Christmas tree outside the Core, carrying a lantern wedged between my legs and my wheelchair, waiting for the parade to start:

And modelling my own handknit hat by the light of my lantern:


The procession began with large sculpture-lanterns coming down the ZigZag path towards the Core building, where we were waiting. It was an impressive sight, although with a slightly hairy moment as a nearby child forgot to pay attention to his own lantern (my reaction of "excuse me! please don't set fire to me!" made me realise just how incurably English I can be). As the sculpture-lanterns and their accompanying drummers came past, we were filtered into the procession. It was quite a strange experience to be actively participating in something like this, being one of lots of little bits. There was a very carnival atmosphere.


The procession wound around the gardens outside the Biomes, lit by flame torches with occasional groups of non-participating onlookers. It ended by a gazebo of fairy-lights, where the Eden Choir were waiting to perform. Since the wheelchair makes me an honorary short person, I was ushered to the front with the kids so we could see.



Listening to the Eden Choir was lovely, and some of the drummers joined in ad lib. Then there was a short and unexpected burst of fireworks which sent Steve whirling around to try and catch a shot:


Finally, this lovely piece of fire art, lit while the choir sang, reminded me very much of the Paralympic closing ceremony which meant that in a strange way it reminded me of summer again.

Bad Sexual Etiquette

Warning: this post is about rape issues.

If you are affected by rape issues you may wish to visit the Rape Crisis website (England and Wales).




It doesn't really matter who he is. Maybe he's your boyfriend, of weeks or months or years. Perhaps he's the old schoolfriend who you met again a few hours ago downstairs at the party. Perhaps he's a "friend-with-benefits" who you've known for years. Maybe he's your husband. Maybe he's the man you don't want your husband to find out about. Maybe you've had sex with him before, maybe not.

It doesn't matter. He's a nice guy. You have no reason to think badly of him. Your taste in men is surely not that bad. You've dumped plenty of idiots and refused to even consider dating plenty more. This one has passed the filters, and you want to have sex with him.

That said, you want to use a condom. Again, it really doesn't matter what your reasons are. Maybe you want to avoid disease. Probably, you don't want to risk getting pregnant. Perhaps you're feeling aware that it would, for whatever reason, be awkward for you to try and get hold of the morning-after pill. Maybe you're on the everyday pill but you missed one, or are just wanting that extra layer of reassurance.

So you're kissing him, and both of you are enjoying it, and you want to have sex, but you slam on the brakes and one way or another you raise The Condom Question. And despite the hormones and desires and excitement, you refuse to go any further until he's agreed and there's a reassuring square foil packet sitting ready on the bedside table (or the dashboard, or the refreshments trolley in the company boardroom, hey, whatever works for you).

Then, with gleeful abandon, the brakes, and the rest of your clothes, can start coming off. You're excited. You're aroused. You are spread out, relaxed, enjoying all sorts of foreplay and eager to have wonderful, enthusiastically consensual, penetrative sex.

And he's between your legs
Oh!
kissing his way up your body
amazing kisses
making you feel fantastic
and suddenly
no, he can't be
he's pushing into you
he wouldn't
and the little foil packet is still sitting there, unopened.

"No!" you say, and your voice sounds like it's coming from a long way away, so you try again, "no, we need to use a condom..."

"It's okay," he says, his familiar, nice-guy face smiling over you.

"No, it's not okay!" you shout? whisper? not even sure any more and you try to push him away but your muscles won't work properly even as he caresses your useless spaghetti arms and gently, almost lovingly, but quite firmly enough, holds them down over your head, and tells you to relax I would relax if you would just put the bloody condom on because he's not going to come in you.

As if that makes much difference. You were awake in sex-ed class, you had it drilled into you that pregnancy and disease are possible from pre-ejaculate. You're certain that at this point in your life you don't want to deal with the mental and physical strain of a pregnancy, or an abortion, or childbirth, or raising a child, or giving a child up for adoption. This is not a risk you wanted to take.

But "no" hasn't worked and I can't move and my mind is whirling too much to give a lecture on sexual health issues...

His face is still over yours. He's still smiling, still kissing you, mistaking your panic for pleasure. He tells you that he wants to feel you orgasm like this orgasm? I'm not even turned on any more and with a shiver you realise that if you can't physically force him off you then the only remaining option is to fake it, get it over with, quickly as possible, minimise the risk, get him off me.

So you breathe, and you try to ignore the little voice that's screaming getoffme getoffme getoffme and you say oh, mmm, yes, NO! and flex your Kegel muscles as best you can until oh thank god he's convinced, and he withdraws, and the smile on his face tells you that your faked orgasm has reassured him that you actually really enjoyed that experience when in fact you're lying there still and boneless and in shock, trying to process what's happened.

He didn't come. Do I still need the morning after pill? Would I even be able to get hold of it without admitting what's just happened? Am I prepared to take the risk? How do I arrange a sexual health screening without anyone finding out? What's an abortion actually like? First things first, what's the date, how long until my next- WHAT THE FUCK IS HAPPENING NOW?

What is happening now is that he's pushing into you again, and this time he's wearing the condom, and you are expected to be grateful for this can't be happening, can't be happening, can't be happening you feel sick and your stomach muscles clench and you gasp for breath and this is also interpreted as excitement and finally he comes and he withdraws and this time you practically leap off the bed and get your clothes back on and you're out of the room in ten seconds flat even though your arms and legs still aren't quite doing what they're told.

He follows you. He's the clothed, smiling man who not half an hour previously was an entirely nice chap, talking to you and making you smile and showering you with affection.

He doesn't think he's a rapist.

Do you?

Problem?

The big line being pushed by our beloved government this week is about "problem families" and the need to "crack down" on them. The right-wing press have seized on this, breaking out charming descriptors like "Britain's worst scumbags". There are apparently 120,000 of them, costing Our Brave Nation £9bn every year. Even the supposedly-neutral BBC agrees, although by now their oft-used phrase "according to ministers" basically translates as "you might want to take this with a pinch of salt."

So, what makes a "problem family"? How do we define the country's "worst scumbags"?

Well, that's where it all gets a bit runny. No one's quite sure where the figures of 120,000 and £9bn have come from - those ministers so keen to make these assertions aren't so keen to have their assertions examined and have not been forthcoming with their sources. Fullfact.org have given it their best shot and come up with the 117,000 families in England classed as "Families with Multiple Problems" as the nearest likely contender. The definition of that is clearly set out. An FMP is a family that matches at least five of the following seven criteria:

• No parent in the family is in work
• Family lives in poor quality or overcrowded housing
• No parent has any qualifications
• Mother has mental health problems
• At least one parent has a longstanding limiting illness, disability or infirmity
• Family has low income (below 60% of the median)
• Family cannot afford a number of food and clothing items.

This quite surprised me because by that yardstick, I spent most of my teenage years in an FMP. My mother was not in work (1) due to her longstanding limiting illness, disability or infirmity (2) which meant that once my father was gone, we were a single-parent family reliant on state benefits which were a low income (3). We had difficulty affording proper food (a regular meal was "pasta and gravy", no meat or vegetables, which I didn't even realise was unusual until I was 19) and most of my clothes were second-hand (4). And our house was in a pretty awful state of repair, cracked windows and dangerous electrical wiring being two of the simpler issues (5). Ding, Family with Multiple Problems.

Eric Pickles, the Communities Secretary, has been ranting about these families not in terms of their circumstances, but in terms of their behaviour - crime and social disorder, truancy, alcohol abuse, and "ruining the lives of their neighbours".

Hmm. My sister and I were never in trouble with the police, we always had a parental note on the rare occasions when we missed school, the only alcohol in the house during our teenage years was the occasional bottle of wine given to our mother as a gift, and we got on well with the neighbours on both sides. We performed well in school, engaged in extra-curricular activities, got home by our curfew and were basically normal, boring, well-behaved kids.

Which on one level is admittedly irrelevant. My personal circumstances are anecdote, not data. To examine the data, go back to the Fullfact article, which is excellent in that regard and links back to all manner of primary data sources, and indicates that the number of FMPs which also have children exhibiting problem behaviour is closer to 46,000.

What I can say - anecdotally - is that while my teenage self would have accepted the descriptor "Family with Multiple Problems" as an unpalatable but undeniable truth, she'd be rather upset by the idea that to live with those problems was interchangeable with behaving in an antisocial or criminal manner. When getting home at 5pm after doing her homework on the school computers with a bunch of other kids in similar circumstances, she'd be quite put out by Mr Pickles' view that children like her needed to get their truancy under control. When babysitting, for free, the child of someone who volunteered one evening a week at a social group for people with learning difficulties, she'd be quite angry to hear Prime Minister David Cameron assert that people like her and the person she was babysitting for were creating "a huge amount of social problems, for themselves but also for the wider community".

Please, please, please, can we stop conflating "poverty" and "immorality", "lives with problems" and "is a problem", and "not in paid employment" and "does nothing of any use at all."

Timing

I often feel quite frustrated about the poor synchronicity between my physical capacity to do things, my opportunities to leave the house, and the weather. For instance, when it's sunny and I feel good and I want to go out and get stuff done, but I'm stuck indoors. Or when my work desk is clear, the weather is okay, and Steve/my PA/someone else is loading my chair into the car for a gleefully-anticipated trip somewhere, but I feel awful and wish I could go back to bed.

So it's with a sort of wry satisfaction that I am sitting here, admittedly in quite a lot of pain while feeling really quite unpleasant with medication side effects, but listening to the rain thrash down outside, snuggled up in a fluffy jumper and the safe and certain knowledge that the nearest I need to get to going Out There today was this morning when I brought the milk in.

There's not even much I need to do In Here.

I'm dopey and tired and I can't sleep for pain, but at least for once my brain's not filling itself up with all the things I should or would rather be doing.

'Cept maybe make another cup of tea.

First Anniversary

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:



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.





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.

This is a technical document

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.



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...

Naidex 2012

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.

That's not a compliment

Written for Blogging Against Disablism Day 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.

Inaccessible Accessibility

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.

I'm confused by the BBC

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.

Healthy Eating With Mary

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.


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.

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.


My next addition provides much-needed calcium as well as offsetting the cocoa level of the dish. Yes, it's 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.



I feel much healthier now.

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

Disabled, not dead

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.

Second lesson

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?

Riding for the Disabled

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.

Restrictions Apply

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.

Repeat

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".

RAF Cosford

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.



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.

Wedding Venue: Stoneleigh Park

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.

Wedding: the Aftermath

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.