Thursday, May 29, 2008


Turned down for DLA again.

40-odd pages of my answers to their questions, plus "supporting evidence" in the form of a specialist's report, two pages of prescriptions, five statements from different people who know me in various capacities, contact details for the people I get practical help from, a statement from my last Incapacity review from one of the DWP's own 'healthcare professionals' agreeing that (to put it in layman's terms) I'm pretty disabled and not likely to improve in the forseeable future... on top of which, my GP is supporting my claim. How much more could they possibly want or need?

Co-worker#1 is convinced that it's an administrative error of some kind - that they've lost some of the paperwork, or that there was a big stack of applications in a tray marked 'for rejection' and mine went in there by mistake.

Suggestions from other people have included that the Decision Maker looked at my massive bundle'o'papers and said something along the lines of Stuff This For A Game Of Soldiers, I Want To Be Home By 5pm; or that the daunting-ness of an Appeal is being used to discourage claimants.

I have no idea, and neither does Steve. We are going to Appeal. If nothing else, the outline of reasons given is a complete contradiction of the evidence which I and everybody else signed off as being true. For example, the letter states I am "not at risk of falling". Almost every piece of evidence that was submitted explains in plain language that faints, falls and stumbles are a several-times-a-day feature of my condition and that I regularly injure myself in the process.

Then again, the comments relating to my condition weren't the only items of fiction in that letter. The very last sentence was a beautiful example. In serious, bold font, it told me "The enclosed leaflet contains important information you should read now." Was there an enclosed leaflet? No. Were the nice helpline people surprised when I phoned and said "I have no leaflet"? No. They're sending a copy of the leaflet out to me.


Steve and I have spent a while on the Benefits and Work website and have downloaded a wonderful 16-page pdf about DLA Appeals, full of simple step-by-step information about what happens at each stage. The Appeals process still looks daunting, but at least now it's a known quantity of daunt.

We phoned the CAB (the CAB here is only physically open three part-days a week) who have referred us to a drop-in 'Benefits and Debt Advice Clinic' at a local health centre on Monday.


In other, much much much more positive news - Steve has passed his final CCNP exam with flying colours (a perfect 100% in all but one section where he only got 87% which is still significantly above the pass-mark) so hopefully the general situation will improve soon.

Wednesday, May 28, 2008

A green thing

Georgette the Courgette
Originally uploaded by girl_of_bats
Ladies and gentlemen, meet Georgette the Courgette. Georgette has been given to me by my lovely friend Mandy of the Tuesday knitters. As you will see from this post, Mandy is quite the gardener.

I am not.

I wasn't sure how to respond last night when I was offered a courgette plant. In retrospect, I should have come out with something slightly less blunt than my chosen "what am I supposed to do with this, apart from kill it?" Apparently it's really easy, all I have to do is "pot it on" (wtf?) and "feed it" (bbq?) and when it produces edible fruit, cook it and eat it (lol). The offer turned into insistence and next thing I knew, Steve was driving me home with this plant on my lap.

I really am more Margo than Barbara. Even if I had the physical capacity to dig a garden, I'd still be lacking the inclination. I will do my best with Georgette (the internet has already indicated that courgettes are also known as Zucchini, and that they are amongst the easiest vegetables to cultivate, which is promising) but I suggest that no one holds their breath for an invite to share home-grown dinner with me any time soon.

Sunday, May 25, 2008

Still preferable to Eurovision

Steve gave me a scare yesterday evening.

It started off gently, as these things do. Late in the afternoon, he got a headache, and decided that the sensible thing to do would be to scoff half a packet of biscuits and a paracetamol tablet. He hates taking any kind of medication and only does it when there's no alternative, but it seemed to help a bit, and after a while we started thinking about dinner. We decided that fishfingers held about the right level of challenge for the evening and turned on the oven to preheat.

Steve started on the washing-up, but then he started feeling worse again and went for a lie-down. No problem, I do that all the time. So I took over the washing up, a little bit at a time like I do. About half an hour later I had finished. The oven having preheated, I decided I was feeling well enough to manage to heat up some fishfingers without close supervision, so I called up the stairs to see how many he wanted.

No response.

So I clambered up a few stairs and shouted again. And again. No response. That's quite unusual. Certainly unusual enough for me to think it worthwhile crawling the rest of the way up the stairs to investigate. I found Steve in bed, sound asleep. Aww, bless. I sat on the bed next to him and tried to wake him up.


No response.

"Steve, wake up, it's dinnertime."

No response.

"Steve?" gentle shaking "I just want to know how many fishfingers you want."

No response.

Rather more enthusiastic shaking "Steve, wake up, stop pissing about, this isn't funny."

No response.

So I tried a few more things. The only things that got any kind of physical or audible reaction were very loud noises, vigorous shaking, and pinching him - and even then, it wasn't words, his eyes flickered but didn't open, he didn't try to pull away, he just flinched and grunted. I could not wake him up.

Now don't get me wrong, Steve is the sort of man who has deep affection for his duvet. It's practically impossible to get him out of bed and up and dressed unless there's something concrete that he has to do, like go to work or catch a train. But it's fairly easy to wake him up and he goes from asleep to responsive and brain-functioning really quickly.

Knowing how much he detests doctors and hospitals, I tried another tactic. I shook his shoulder until I got another grunt out of him and then told him loud and clear "If you don't wake up, I'm going to call 999."

No response.

Crap. This really wasn't just a love of the duvet. Something was wrong, and to do nothing and assume he'd wake up in a little while would be tantamount to negligence. But, on the other hand, he was breathing quite normally and wasn't turning funny colours, no blood, no limbs missing, no trauma, and he wasn't totally out-cold-unconscious, so was 999 appropriate?

My first thought was to call the GP, but quite apart from the fact that it was Saturday evening, Steve doesn't have a GP. Heigh-ho, NHS Direct it would have to be.

After 15 minutes on the phone to NHS Direct, giving all relevant details, and prodding and shaking and shouting at Steve as instructed (and still getting no response), the nurse put it to me that this was not normal and that she would like to put me through to a 999 operator in order to send an ambulance so that Steve could be checked over.

I come out with some stupid comments sometimes. But, "I'm sure he'll come round in a minute," after trying to rouse him for close on half an hour, has to be in the top twenty at least. She put me through.

Ambulance Control already had a certain amount of information from NHS Direct, so I just had to confirm my address and stuff. At that point, apropos of nothing, Steve moved. I told the 999 guy this, but he said that even if Steve properly woke up, he needed to be checked out anyway, and that in the meantime, I should stay with Steve, make sure he kept breathing, help him if he vomited and so on.

"No problem," said Mary.

"OK," said 999 guy. "The ambulance is on the way (I'd heard they weren't allowed to say that). Shut away any pets, open the front door of the house, and wave down the ambulance when it gets to you."

"No problem," said Mary. "Thank you. Goodbye."

As I hung up, I realised that it was in fact physically impossible to stay with Steve, in the bedroom upstairs, and also open the front door, which (and I realise this is rather unoriginal) is downstairs. Added to which, it takes me over a minute to get myself up or down a flight of stairs at the best of times. And I hadn't thought to mention this to anyone.

Just to make things even better, at this point Steve stirred again, sat upright, went horribly pale, and fell back down onto the bed again. Well, mostly onto.

Swearing may have occurred. I got him settled, although still not awake, then slid down the stairs to unlock and prop open the door. Then I sat four steps up the stairs, so that I would be able to hear any movement from Steve upstairs or an ambulance outside.

The ambulance arrived a couple of minutes later. I lurched forwards to greet it... as Mr Dazed and Confused staggered out of the bedroom to find out what was going on (well, that's what he says he meant, this being the first part of the proceedings that he has any recollection of. At the time it came out as more "wstfgl?"). He reached the bottom of the stairs at about the same time as the ambulance people. Half an hour of no responses to anything I said or did and then seconds before help arrives, he's up and about. I though only toddlers were supposed to do that?

Poor Steve then got his finger stabbed and a light shone in his eyes and cold things stuck to his chest while he was still barely awake and wondering why there were loud people in green outfits in his house. I think he'd have preferred a cup of coffee. Still, he was steadily waking up more and more, so I was happy about that. I think given a choice between feeling like a wally, and rushing to A&E with an unconscious boyfriend, I'll opt for 'wally' every time.

Eventually, the ambulance people decided that he didn't need to go to hospital but that he should see his GP (ahem) and probably see about getting painkillers that aren't paracetamol-based. I don't believe Steve has any intention of doing anything so sensible, but it was a relief to be able to re-set the evening from 'hospital?' back to the original plan of 'fishfingers'.

He's fine, though. There are two ways of telling.

Firstly, he won't stop teasing me, big meanie that he is. :(

Secondly, the ambulance people left behind the finger-stabbity-clicky thing. It's meant to be single-use. It's not any more. Engineers...

Thursday, May 22, 2008

Finished Object: Birthday socks

Birthday socks
Originally uploaded by girl_of_bats
Hooray, hooray, what a wonderful day, for I have finished my Birthday Socks!

Actually I finished them a few days ago, but what with the miserable weather and everything going on, I didn't get round to photographing them. And what with the miserable Unbloggables going on, I didn't get round to blogging about socks, because really, I have too many things in my life to care about this month which is kind of making knitting accomplishments fade into the back files of my brain. And you can see how bright these socks are - that's some serious fading.

If there's something I'm supposed to be doing for you (writing or making or calling or fixing or whatever) and I haven't done it or I'm late with it, I'm honestly sorry. Odds are I haven't forgotten (Clare and Anne in particular, you are on the Whiteboard of Memory and I will get to it) but a reminder never hurts.

I have also finished and photographed the Top Seekrit Project. I will publish the pictures and the pattern (such as it is) in about a month, when the recipient has recipificated it. Suffice to say I am happy with it, and having a bit of an Umm-Ah about whether I should make another one for myself.

Saturday, May 17, 2008

Careers Advice

My teachers at school had high hopes for me ten years ago, when I finished my compulsory schooling and looked down the barrel of sixth-form. I wasn't a genius or anything, but I was a good all-rounder who was generally in the top five of the class in any given subject, with the exceptions of PE and Design Tech. It was even in the reference my form tutor wrote me - "Mary will be spoilt for choice of which A-levels to take."

If you'd told those teachers that in ten years time I would be scraping almost-minimum wage doing a trained-chimp job where I wear trainers to work, they probably would have looked very confused and checked that you were talking about the same Mary.

But, none of them would have been able to give you much of an idea what I would be doing. I was and am reasonably good at all sorts of things, but nothing has ever stood out enough to indicate a specific career of any kind.

At the moment, I am happy as a CD dispatcher. Some of the most important factors for me working are: that I have a flexible and open-minded employer; that my colleagues are sensible and understanding about my particular needs; and that it will not cause death and destruction if I am suddenly crumple up with a migraine (for instance, I should never be an air traffic controller).

In my current job, I have all of that and more. My boss and co-workers are supportive without being patronising, and if for whatever reason I can't work, then the worst that happens is a customer has to wait an extra day for a CD, which to my knowledge, is not the sort of thing that the fate of the free world depends on. We even have a good selection of drinks and biscuits provided in the office kitchen cupboard. That's the sort of perk that isn't to be taken lightly. Some of the most highly-paid career-people I know are jealous of me, as they feed their 20ps into the vending machines in the corridors of their corporate workplaces to obtain a styrofoam cup of alleged tea.

That said, no one should be surprised that I have no desire to be a CD dispatcher for the next ten years. No matter how lovely the people or the workplace might be, the job itself is tiring*, boring, low-paid, unchallenging, and probably not the best use of those all-rounder skills. Furthermore, since I have no interest in classical music, I have no promotion prospects within my current firm.

But, like my teachers ten years ago, I have absolutely no idea what I should be doing. My tragic realisation that, once I got past the age of 18, no one would give a monkey's about the school qualifications I worked so hard for, has not helped.

Some things I won't be doing no matter what. I'm not going to be an astronaut or a doctor or a lawyer or a rally driver or CEO at Microsoft. It's just not on the cards.

There's the stuff I used to do, "helping disabled and disadvantaged people into training and employment"... I was reasonably good at it and I did enjoy it, but these days I think it would be a little bit too close to the bone. I would flinch at having to deal with the Department of Work and Pensions in my work life and my personal life. In fact, this acquired mindset where I regard the DWP as "to be avoided at all costs", probably prevents me from doing most of the sort of social-care kind of work that would, how can I put this, make my Mother proud.

I can think of a hundred new things I could try (given support as appropriate) but most of them, such as being a teacher or a hairdresser or an accountant, would require me to spend a year or more getting qualified first. That isn't a problem. I'd be quite happy to spend a year or so at college, if I had a goal in sight. But I have no idea what I'd want to study and it seems pointless to study just for the sake of it, to put time an effort into doing a course on no real basis other that it happens to be running at the nearest college.

So for now at least, and until any better plans present themselves, I trundle along with the picking and packing CDs.

* The 'tiring' thing is the big problem at the moment. The 'Christmas rush' hasn't subsided, which is great for the company, but not great for me, as I really cannot maintain this level of daily physical effort. My boss would be happy to consider reduced hours, flexitime and so on, the trouble is that if I dip below 16 hours per week then my wages dip to 'better off on benefit' level. If I was a client of the company I used to work for, then I would be put on Supported Permitted Work which allows people who can only work part-time for disability reasons to keep a certain amount of earnings on top of Incapacity Benefit. But the local DEA (as featured previously) won't help, she just tells me I can work 16+ hours or not at all. I have an appointment with my GP next week, maybe she'll have some ideas.

I am also, god help me, considering Tax Credits, on the basis that if I have to wrangle with them ad infinitum anyway, I might as well do a smidge more wrangling and actually get something for it.

Thursday, May 08, 2008

Poddling Along

Observant readers will have spotted that there hasn't been a great deal of news on the knitting front. However, knitting was what got suggested in the comments to my previous post, so, here's the news: I am still working on the jumper that I started at about the same time I moved in with Steve. I have one-and-two-thirds sleeves left to go, plus a certain amount of sewing up. I am also still working on my birthday socks. It took a month to do the first sock, but I'm still a certain way off finishing the second. Twenty more rounds and then it's the toe decreases, for those In The Know.

There are various reasons for the lack of knitting progress. There was the DLA form-filling, and there was a shoulder injury, and there were a couple of phases where I rediscovered addictions to computer games like The Sims 2 and Settlers. There is also, the Top Seekrit Project.

The Top Seekrit Project is a ******** that I have made for ******. It's ****, just like the *** I made previously, with cute little ******s on it just like on ** ****** ****. I finished knitting it a couple of days ago and now I'm just doing the final sewing-up and blocking. It is just a smidge too big, but I feel quite confident I can find a way around that. I think I have enough of the yarn left that I could make one for myself as well. Tempting.

I can't try it on right now though, because I am covered in sun-cream after a fantastic Day Off Work. It's been the first "normal" day of work I've had from this job, by which I mean, it wasn't because I was sick and in bed, or because I had Plans, or because it was a weekend/bank holiday to be spent cowering indoors from the crowds and traffic (seriously, have you ever tried to propel a mobility scooter through a Saturday shopping crowd? not possible, unless you fit blades to the wheels). It was just a gorgeous day, a weekday, a sunny day. So first I went to Boots, for the purchase of sun-cream, and then, having applied said sun-cream, continued on to the book shop. Half an hour later, I'd finally spent my Christmas Book Tokens, and then it was onwards to the park, where I relaxed in the sunshine or in the dappled shade of the trees by turns, read for a bit, sock-knitted for a bit, and got myself an ice-cream. Mint-choc-chip, as it happens.

It might not sound like much, but it meant a lot to me. It was the first chance I've had to properly go out on my own since starting work. Sure, I go to work, but the taxi picks me up from the door of the house and deposits me at the door of the shop, I can't suddenly decide that I'm going to take a different route, or leave early to do some shopping, or drop a letter in the postbox on my way home. Steve is lovely about driving me places or pushing the wheelchair, but I hate having to be so ask-y, so demanding. So it was nice to just go "I think I'll go over here. Now I think I'll stop for a minute. Now I think I'll go over there," and simply do it, for no apparent reason, without needing to ask someone, or to think carefully about whether I can afford to use up my whole day's energy on such fripperies.

I'm very tired, but very relaxed. Hopefully tomorrow (Friday) I will wake up feeling a bit more refreshed, and then it's an afternoon at work before the weekend-proper.

Tuesday, May 06, 2008

I know, I know

I already did my BADD roundup. But that was before I had read this. Go. Read. Now. Wet yourself giggling. Come back later.

Myself, I am spinning a few too many plates in my head at the moment, lots of Stuff and Thing that is other people's business and thus not so bloggable. I'm sure you know how it is. I will apply myself to making a proper blogpost soon but right now it's not a priority. If anyone wants to suggest topics, that'd be nice.

Friday, May 02, 2008

BADD Blogs Of Note

Following on from Blogging Against Disablism Day 2008, I thought I'd post a list of links to the posts I thought were particularly good, for all those people who for some unfathomable reason might not wish to dedicate several hours to reading each and every one of the huge number of posts submitted to the event. I've read about 70 so far, and despite already having an interest in the event and the issues surrounding it, I'm reaching saturation point.

Having realised, about ten posts in, that I was considering most if not all the posts to be really quite good and making really quite important points - even if I didn't entirely agree with everything being said - I got snippety and have ruthlessly cut this list down to my absolute favourites.

Starting off gently, Rudy at Coping With Disability makes a good, and often overlooked, point in this succinct post about the importance of communication.

Ruth at WheelieCatholic writes interestingly about enabling the ableists.

David at Growing Up With A Disability has written a very engaging post about mistaken identity.

Jeanie at Midlife and Treachery has done a darkly humourous post about the bad habits of ableists.

Cherylberyl at Disaboom has posted her well-researched paper explaining about the Tiny Tim and Supercrips views of disabled people.

And finally (for now), in No Quarter Asked Or Given, Jade Lennox explains how even people who think about how to provide accessibility don't always understand how it is applicable to their world...

I'd also like to quickly say, thank you to everyone who has commented or linked to this blog. I appreciate each and every one. Unfortunately the much-requested t-shirts are currently beyond my competence, but anyone who has iron-on transfers should feel free to go ahead.

Thursday, May 01, 2008

Different but Equal

Written for Blogging Against Disablism Day 2008.

Blogging Against Disablism Day, May 1st 2008

Equal does not mean identical for the same reason that different does not mean inferior, or, for that matter, superior.

Equality, therefore, does not mean giving everyone exactly the same thing, or desperately trying to force one size to fit all. It means giving everyone the same standards (of service, of access, of respect, of quality of life) while recognising the different methods needed to achieve those standards.

Public transport is a good example of this - it's not the only example, but it's one which allows me to make my point. You may have recently read in the news about how all elderly and disabled people in the UK are to get free bus passes. Along with quite a few other disabled people I have spoken to, I'm quite bemused about this.

For starters, there's a load of ifs and buts - little things like No Being Crippled In Public Before 9:30am (they phrase it differently but that's the precis), which is little short of ridiculous to anyone who's ever been told to attend an 8.30am appointment at a hospital twenty miles away.

More importantly though, the bus system is inaccessible to many people. Some, like myself, are completely out - I can't walk or self-propel a wheelchair as far as the nearest bus stop, and although on my better days I could ride my mobility scooter to the bus stop, I wouldn't then be able to put it onto the bus. Others, who can get to the bus stop, then find that there's no space - or more accurately, that there is ONE space that disabled people and parents with prams can fight over amongst themselves. Quite rightly, the bus drivers won't simply have wheelies "squeezing on" because it's dangerous to everyone concerned, so the losers (be they parents, babies, toddlers, children or disabled people of any age), just have to wait at the bus stop, regardless of cold, rain, appointments, feeding or medication schedules, and hope that the single precious space on the next bus will be available.

Or the next one.

Or the next one.

Even once you've got a seat, the problems don't end. For instance, many of the more modern buses have a scrolling display telling you what route you are on and which is the next stop. Very handy. Then someone realised that blind and visually impaired people couldn't read that, so they had the bright idea of an audio announcement for each stop. This, in turn, is causing problems for people who, for various reasons, have difficulty processing an overload of information - it's even stressing out plenty of neurotypical people on routes that have frequent stops.

Bus passes are issued by the local council, and different local councils deal with the issues differently. Where I live, the approach is that if you are eligible for a bus pass, but cannot use the buses, then instead of a bus pass, you get 'tokens' for local community transport. You get twenty trips per year at the special price of 65p per mile. Assuming that every time you go somewhere, you need to get back again, that's TEN local outings per year. As long as it's Monday-Friday, between 9am and 9pm, you book two days or more in advance, and subject to availability of course... oh, and you can't have a bus pass AND tokens, so no getting transport at 65p/mile to the bus stop and freebie-ing from there.

This does not really compare well to Christine and Manju, who are taking a 700-mile tour round the UK for free using their bus-passes. Don't get me wrong, I hope they have a wonderful journey and I think it's great that they're exercising the freedom to travel and explore without worrying about the cost of transport. I just think there's a bit of an illusion that ALL elderly and disabled people could do this if only we were a bit more determined, a bit more spirited. It's simply not the case.

I can't help feeling we'd be a step closer to equality if none of us got free transport, but by the same token, none of us found transport around the local area so expensive that we have to stay at home. Equality isn't one person on a free jaunt around the country while another can't even go to the shops once a week. Equality would be all of us having reasonable and regular access to basic amenities.