Sunday, November 25, 2012

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:
Inside the Mediterranean Biome at Eden. Blue skies, blazing sun, abundant green leaves, people wearing summer clothes.

In November, even inside the Biomes, it's more like this:
Steve kisses me, in the same Biome. We are wearing warm jumpers, the leaves have dropped and those that remain have changed to autumnal colours, and the sky outside is grey and cloudy.

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.
Silhouette profile of a person's face, sipping from a cardboard cup of steaming hot chocolate which they are holding with both hands
Inside the Biome. The bubbles are dark blue with the reflections of lights looking like constellations. Some plants are uplit, others are in shadow

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:
Mostly dark picture with pyramid lantern lit up. Me wrapped up in cold weather clothes and smiling. Some small twinkly lights in the background
And modelling my own handknit hat by the light of my lantern:
Me smiling, wearing a grey knitted hat. My face is yellow and red on the side lit by the lantern, and blue on the shadow side

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 parade. Large white lanterns resembling a tea party, an origami bird, a mushroom. In between the white lanterns, lots of yellow pyramid lanterns. The carriers cannot be seen except as occasional silhouettes

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.
the yellow pyramid lanterns and silhouetted carriers gather around a gazebo covered in white fairy lights, while the larger sculpture-lanterns continue past
lots of people including me, lit by the pyramid lanterns, listening to the Eden Choir

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.
Fire picture of reindeer and the sun

Saturday, August 25, 2012

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
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?

Tuesday, June 12, 2012


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. 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."

Friday, June 08, 2012


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.

Wednesday, May 30, 2012

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:

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

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

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

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

a stitched panoramic photograph of the Eden Project

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

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

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

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

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

Monday, May 14, 2012

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.

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

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

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

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

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

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

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

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

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

Friday, May 04, 2012

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.

Tuesday, May 01, 2012

That's not a compliment

Written for Blogging Against Disablism Day 2012.

Blogging Against Disablism Day, May 1st 2012

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

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

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

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

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

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

Tuesday, April 10, 2012

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.


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.

Wednesday, January 18, 2012

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:; 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.

Tuesday, January 03, 2012

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

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

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

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

all gone
I feel much healthier now.

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