52/52

Welcome to the final 52 Project photo!



It's not a great photo, I admit. Like many families we've spent the week of 18-24 December frantically trying to make sure that Christmas runs as smoothly as possible, balancing routine against festivity, working out meals against supermarket opening times, doing last minute wrapping and so on. Just to make it that bit more challenging we went to visit Steve's mum - only for about 30 hours but that means as well as presents there was all the overnight stuff and all the eating stuff and all the stuff in case stuff gets covered in food before, during or after the digestive process... So there have been few photos and even fewer good photos.

Nevertheless. I'm glad that I did this and I intend to do it again next year. One photo a week is a nice amount to spool through and watch the changes. It's been an achievable blogging target and one I would not have managed without the regularity of a weekly post and the inspiration of just picking one photo from the previous seven days.

Optimistically, 1/52

For quite some time now I've been enjoying Carie's 52 Project photos - one photo a week of each of her children. She's doing it again this year and asked if anyone else wanted to join in.

Truth be told, I'm rather intimidated by the mummy blogger scene and while I admire a lot of the events, projects, photos and of course blogposts that happen within... the community appears to be full of overachievers and that's not me. I like taking snapshots with my phone, but I'm not a great photographer and have no burning desire to improve. I like writing, but I prefer sleep, and when I do write, I rarely hit Post. I like cake, but I buy it from a shop. I can knit, but slowly, and not particularly well. My Kidston-fu is lacking. Online mums evoke an even more extreme response of admiration and fear than the cool kids at school did.

But, I have the great privilege of knowing Carie in "real life", and although the tag of overachiever would perhaps not be entirely misplaced... she's just too friendly, pleasant and cheerful a person to be scary with it. And I feel confident that if I join in with her on the 52 Project, she's barely going to notice the quality of my photography and won't give a hoot about my failure to change my blog template since, um, well, ever. She's just going to enjoy seeing Jamie grow in the same way I enjoy seeing Kitty, Elma and Pip grow.

So, I'm taking the plunge and hoping to stick with it. Here goes, with picture number one...



I like this picture because it encompasses all the best bits of having Steve at home with us for the holidays (that's his hand disappearing in the bottom right hand corner). While we tried not to disrupt the routine too much, having lazy mornings of the three of us all playing on the bed together was an absolutely brilliant way to start the year.

BADD 2014

The ninth annual Blogging Against Disablism day will be on Thursday, 1st May. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.

Due to the overwhelming everythingness of last year, I didn't participate in BADD 2013. However, I loved taking part in 2008, 2009, 2010, 2011 and 2012. I'm thrilled that it's happening again in 2014.

BADD is not just for disabled people. If you feel like you have anything to say on the topic, then please go to Diary Of A Goldfish (Blogging Against Disablism Day) to sign up.

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...

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.

The Discworld Wedding Quotes Project

It's time for another wedding project!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One Month Before Heartbreak

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

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

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

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

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

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

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

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

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

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

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

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

Finally...

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

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

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

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

2010 - A Roundup

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And Up Again

I've spent the last month or so having a bit of an ME flare-up, which hasn't been nice. What's positive, though, is that I've been ill for long enough to be able to identify that it's just a flare and deal with it accordingly. In real terms that means doing lots of things for ten minutes at a time. So, a quick run through of my usual topics...

Steve
Is lovely. He's not enjoying the heat very much (he prefers to be cold and add layers) but we've still been out in the sunshine a few times when it hasn't been too stiflingly hot - barbecues, cream teas, going to the park and suchlike.

Pip and The Boy
The Boy is fine and continuing to grow like there's no tomorrow. Pip, on the other hand, is suffering a bad case of Clumsy at the moment and has managed to sustain two entirely different injuries requiring hospital treatment in as many weeks (and on separate occasions). He says the most upsetting thing is that he is currently perfectly capable of making a cup of tea, but lacks the capacity to carry it anywhere. I desperately hope this is not the set-up for a "scald" injury to complete the set.

Wedding
Plans for the wedding are coming along nicely. We have fixed our date in May next year, booked the registrar, made an appointment to give notice, and chosen and booked our venue. We've also forked over the deposits, which means that even if we don't manage to decide on anything else, we now have everything we need in order to get legally married.

However, we haven't paid the premiums for an Approved Premises wedding (extra for venue hire, extra for the registrar to travel, etc) just to turn up in jeans and t-shirts and drag a couple of witnesses in off the street. So there's still an awful lot of planning to be done.

Business
The business is off the ground now, with "real" paying customers who didn't start off as personal friends, a website, some wonderful artwork, and best of all some really interesting jobs. Some boring ones as well, it is true, but one research project in particular I had an absolute whale of a time doing.

I really want to show it all to you, not least to give due credit to the terrific people I've worked both for and with. Also this blog, with regular-ish content, quality comments, and four years of archives, has a respectable Google PageRank which would give my business website quite a boost if I linked the two. But for now at least, I really want to keep my business and personal online identities as separate as I can.

Wheelchair
Allegedly due tomorrow morning. However given the previous issues and timelines so far (applied week1 February, assessed week1 March, approved week3 March, test drive week2 April, placed order and deposit week2 April, now it is week2 June) I am trying to not hold my breath and haven't booked any activities yet. However my friends and I have been coming up with lots of ideas for things I could do, including but not limited to:

• The Cancer Research UK Race For Life next year - I won't be getting a winning time, but I should be able to accompany a friend who is expecting to walk around.


• The Stratford Town Walk which is allegedly both free and accessible.


• Getting a Disabled Person's Railcard and going places by train.


• Going around Ikea and only needing one assistant.

Even if I don't do any of that, though, it will be nice to just go round the block and post a letter without needing help to open the garage or someone else to push or drive me. I fully expect Steve to have stuck a proximity tag on me within a month.

Anger at Current Affairs
Um, let's not. Even if I could whittle it down to just one target, we would be here far too long. Let's just say that I don't feel very represented by the new Cabinet (not that the old one was better) and can only hope that the extraordinary wealth and privilege that they do represent brings with it a sense of noblesse oblige.

2009 - A Roundup

January
As usual, the year began with my birthday, which this year was accompanied by a visit from my mother. I also managed to get everything ready for hiring a personal assistant with Direct Payments and finally placed the advert. I found it very scary as I was desperate to be a "good" employer and worried that I'd get things wrong.

Meanwhile Steve and I found time to go on a number of weekend outings, including trips to the National Sea Life Centre, Birmingham and the Roald Dahl Museum and Story Centre.

February
There was snow in February and I suffered for it, and I'm sure I inflicted some of that suffering on to poor Steve. I had a another job interview but I started becoming very concerned about whether I was getting all these interviews because of my employability, or whether they were "sympathy" interviews thanks to the Two Ticks scheme.

March
In March my local council decided to withdraw the accessible Community Transport scheme which had until then provided the only affordable means of local travel to disabled residents like myself who are simultaneously unable to drive and unable to use public transport.

Luckily for me, I had just hired my PA and, although I had a little bit of difficulty getting my head around having an employee to help me (as opposed to struggling on insisting I can manage) we got on well and quickly developed a smoothly functional working relationship, allowing me to participate in the world a little bit more.

April
April saw a few changes to my working life, as my manager B asked me to take on a few more admin tasks (which meant a bit less of the more physical packing-CDs tasks). I really enjoyed learning the new things I was doing, but didn't want to tell anyone about it because it wasn't a "formal" change, and the main part of my job was still dealing with the CDs. This informality turned out to not be a good thing.

I attempted to argue with the council about the loss of transport provision, but although a number of councillors acknowledged my arguments and promised to attempt to put forward the issues I had raised, nothing came of it. The entire budget has been allocated to over-65s in "rural areas", regardless of their mobility needs - a hale and hearty over-65 who is perfectly able to walk, cycle, drive a car or catch a bus gets help, an under-65 who can do none of these things gets no help.

May
Once again, May started with Blogging Against Disablism Day. I wrote a post about people who assume the right to make our life decisions for us, followed by a roundup of my favourite BADD posts from elsewhere in the blogosphere.

June
In June I was far too busy doing things to actually write about any of it. Steve finished working for a while and went off on his motorbike to the wilds of Scotland, although regrettably the "summer" weather meant that the beautiful camping holiday he had planned turned more into a series of hops between B&Bs and cafes where he could dry out a little and get a hot drink inside him. I, on the other hand, went off to Lowestoft to see Pip and the Boy for a week, and came back gloriously sunburnt despite lashings of high-factor sun cream. In fact my only regret about my holiday was that Pip and I could not have the marvellous roast dinner we'd been planning because it was simply too hot to eat proper meals, let alone cook them.

July
My beloved and trusty laptop finally gave up the ghost after more than three years of almost permanent use. I have a new one, but it runs on Vista (shudder), it's unstable as anything, and try as I might, I just can't love it.

August
Terror came in August, as the government revealed plans to axe certain "disability benefits" that are given to disabled people to enable us to meet the extra expenses that disability incurs, and instead give the money to Social Services to spend on our behalf.

I made another effort to get the council to consider reinstating some sort of transport provision for under-65s who cannot walk, drive, or use the buses - even if only for medical appointments - but again, while I was listened to and agreed with and notes were made by the councillor I spoke to, nothing has been put in place.

Despite this, it was a wonderful summer and Steve and I enjoyed many lazy weekends, often involving a cream tea in some local beauty spot. If it wasn't for the his'n'hers G1s you'd be forgiven for thinking we'd fallen into the 1950s. My friend Carie won several prizes at her Village Show, but my own culinary skills remain somewhat lacking.

September
In September my employment status started to become a bit shaky. My line manager B, who had been responsible for moving me to a more admin-centric role, left the company and suddenly I found myself being assigned much more physically demanding tasks by his replacement. I asked for a clarification of my job role and, if I was expected to do different tasks to the ones I was doing at the beginning of my employment, a new Access to Work assessment.

Meanwhile, I started on a second job for a friend of mine, a couple of hours here and there, working from home to top up my income a bit and improve my CV as well as help her out. Steve also went back to work after his "summer break".

October
October was when things fell apart. My PA informed me that by the end of the year she would no longer be able to work for me, and I got the forms through for my DLA renewal - all 40 pages of it. While attempting to get help with the forms, I got stuck on an outdoor lift which isn't a fun thing to do in October, and I really started feeling like I was drowning not waving...

And then to round the month off, my managers responded to my request for job role clarification and a new Access to Work assessment by telling me that if I couldn't do all the new tasks that I was expected to do, then I would have to start looking for alternative employment. I decided to quit and make it my decision rather than theirs.

November
Somehow I kept on top of things and managed to work my notice, complete my DLA form, and prepare my employer paperwork for my PA's departure. Once I was no longer at work things got a lot easier and I started seriously looking into setting up my own business. I ran into a lot of barriers because of the disability thing - not being able to "pop over" to Coventry for a day's informal workshop every so often meant that I was left to my own interpretation of online materials. There are a lot of helpful PDFs out there, especially on the HMRC website, to help someone trying to set up their own business. Unfortunately there's no way of telling which ones are the useful, relevant ones, and which ones don't apply to you... the worst day of this saw my phoning my mother's house and opening a conversation with "talk to me about something that isn't tax!!!!!"

December
My PA was off sick a lot and I found myself gradually going potty from being stuck indoors on my own all day. While waiting for a referral to a specialist "disability" business advisor (which wasn't all I'd hoped) I set to preparing all the Christmas details, which paid dividends as Steve and I were both struck down with Lurgy in the middle of the month and we never would have managed it as a last-minute job.

Christmas was lovely, with lots of gifts and food and relaxation and monkeys. However the Lurgy seems to have reasserted itself, so unless both Steve and myself have a dramatic improvement in the next few hours, our New Years celebrations are likely to consist of little more than being woken up by midnight fireworks and having a celebratory nose-blow.

Happy New Year to all my readers, and especially to all those who have left comments - you've made a real difference to my life.

Book Review

At the beginning of June, Tom Reynolds of Random Acts of Reality fame released his second book, More Blood, More Sweat and Another Cup of Tea (also known as BST2 for ease of tagging).

I eagerly ripped open the Amazon package, started reading, almost joined gentleman blogger extraordinaire Scaryduck in a typo-spotting spree, and announced my intention of doing a quick review just as soon as I got to the end...

... and suddenly lost more or less all of my ability with words. Seriously. In the last two months Steve's finished working, he's been off on holiday (biking/camping in Scotland), I've been off on holiday (back to Lowestoft to see friends and family), I've finished several knitting projects, I've enjoyed weekly excursions with my PA, been to a couple of parties and generally been living a pleasant and stimulating life, yet all I've managed to blog are a couple of half-baked rambles about my disability-enhanced shopping skillz0rs and a G1 app that I wish existed. I've also had difficulty reading, which is why it's taken me until now to finish BST2.

I'd be ashamed to admit that and probably would have brushed my intent to review under the carpet as "no longer relevant" if it wasn't for the fact that Tom is probably wondering why it has taken me so long to notice that he's been lovely enough to namecheck me in the acknowledgements as one of the regular commenters on his blog, and I'm therefore even more ashamed that I have not in fact been commenting at all since then.

Still. The book is now finished, and a review was promised, and so a review there shall be, half-baked ramble or otherwise.

The first thing about this book is that it's available for free online as well as for cash from Amazon and regular high-street bookshops. I quite like having a tangible copy, myself.

The second thing about this book is that it isn't really a "read it all in one go" kind of book - it's a series of self-contained blogpost-length entries with very little by way of continuity or story arcs. This makes it rubbish as a novel, but fantastic as a book for looking at for ten minutes at a time, while you wait for the bath to run or the oven to preheat. It would also be a good book for the bathroom (insert obligatory joke about soft pages) or to take on holiday, because it doesn't take an hour to "just finish the chapter" or "just see what happened to this person" while someone else is tapping their foot and waiting for you.

It is quite similar in many ways to the first book, as you would expect for an autobiographical account of the same job with the same company by the same person during the same decade. There is a slightly different feel to it though. The first book Tom was quite "angry young man", whereas in this one he seems more cynical, but also more stoical.

That said, if you haven't read the first book or the blog, then odds are you will start to get angry about some of the nonsense that Tom and his colleagues have to deal with day in, day out. I'm sure most of us could put forward a few stories about out-of-touch management, irrelevant targets, and clueless customers, but for most of us, there aren't lives hanging in the balance.

It's not all doom and despair, though. Tom's dry sense of humour provokes more than a few quiet chuckles, and there are plenty of positive encounters, often when least expected. So although you get caught up in the writing and grind your teeth about the morons with the inflated sense of entitlement, you also feel gratified when people's humanity shines through and absolutely jubilant when a life is saved.


Edited 12:08 12/07/09 to update link

Well-meaning Insults

For Blogging Against Disablism Day 2009.



On April 13th, I posted to alert my readers to the annual Blogging Against Disablism Day event. I was umm-ing and aah-ing over what particular topic I should write about - and then, like a gift from the gods, came this comment:

hi mary--
have been reading your blog for a bit, & this is sort of a response to your wanting to have a kid with steve.

it makes me sad to read your struggles, but i would beg you to leave that idea (or even adoption or fostering behind.)

how on earth could you take care of a child when you spend most of your time seriously broken? you seem like a lovely person & to put a child in that position would be cruel no matter how much you craved being a mommy.

please be careful, stay on birth control & accept that your fate is to not be able to go down a maternal road.

best to you. sandy

My first thought was to write a blogpost (or fifty) explaining exactly how Steve and I intend to deal with some of the challenges posed by parenthood, the potential solutions we've discussed about logistics, equipment, safety, human support and so on. But why? This isn't a parenting blog, and until such time as Steve and I decide to take active steps to make a family, there's no good reason for it to become one. Justifying my life choices to internet strangers seems like a poor way to spend my time and energy.

That's when I started to become angry. Of all the topics covered on my blog, from knitting to job interviews, from Social Services to fun days out, how is it that a stranger feels the need to "respond" solely to the idea of Steve and I having a family together - an issue last mentioned several months previously and in the context of a 99 things blog meme?

Simple answer: Disablism.

This wasn't a personal attack on me, or even a well-meant but blundering remark on my life as an individual. It had very little to do with Mary, Batsgirl, aged 27 and living with a boyfriend and a robot vacuum cleaner.

Sandy wasn't thinking about my personal capabilities, or my personal circumstances, or my personal motivations - how could she? I'm hardly the world's most regular blogger and only a fraction of my life is displayed on here. She was writing about a stereotype of a disabled person, or as she put it, someone "seriously broken". When that stereotype was challenged by my offhand mention of a one-day ambition to have a family, she was so shocked by it that she felt the need to "beg" me not to do it.

Sandy was assuming that, as a couple which includes a disabled person, Steve and I would be unable to raise a child.

Sandy was assuming that Steve and I would be unable to consider our own circumstances and resources and make a sensible decision for ourselves, and that it was therefore perfectly okay for her to tell us what we should and should not do with our lives.

Sandy asked "how on earth could you take care of a child?" as a rhetorical question - she wasn't interested in waiting for (let alone listening to) any response before moving straight on to dictating my "fate" because she had already made up her mind that a disabled person such as myself cannot take care of a child.

Sandy cannot open her mind enough to consider that a child who has a disabled parent could be happy, comfortable, loved and well looked after. She considers disabled parents to be "cruel" for inflicting their horrible crippled selves on an innocent kiddie. I suspect she's thinking of the telethon image of a melancholy 'young carer' gazing soulfully out of the window and begging for their childhood back. This article by Lucy Scholl offers a different perspective, as does this one by Laurence Clark.

Sandy was writing about her own prejudices, her own unsubstantiated views, and her own baseless assumptions. Sandy was writing about her fears, her closed-mindedness, and her negative mental picture of disabled people - and then superimposing all that onto me to pre-emptively accuse me of child abuse.

That's disablism.

What's encouraging, though, is that the tide is turning. After responding to Sandy's horrendous comment, I tweeted about how gobsmacked I was, and within minutes support was arriving in the form of blog comments, tweets, emails and suchlike, much of it from friends who aren't politically- or disability-minded. More and more 'ordinary people' are becoming more and more accepting of the idea that a disabled person is every bit as much a person as one who is not yet disabled. As a civilisation we have a lot of that journey still ahead of us, but I take heart from the knowledge that significant steps have been and will continue to be made.

Blogging Against Disablism Day will be on 1st May, 2009

Once again, the excellent Goldfish is hosting Blogging Against Disablism Day on May 1st 2009.

This will be the fourth year running for BADD (see archives of 2006, 2007, and 2008) and the second year I am participating. Well, I say second. My 2008 post is here. Technically I was around for 2007 but I wasn't in a fit state to write anything, and that could happen again, we'll see (currently I am drafting posts and then deciding they're rubbish, it'll be a minor miracle if I even publish this BADD reminder). Of course if anybody wanted to suggest a particular topic or news story for me to pull to bits, get me started, that might help. But better yet would be writing your own post and joining in - you don't have to be disabled and it's fun to be a part of the whole shebang.

If I was a writer, I would say I have writer's block.

I'm not sure what the blogger's equivalent might be. Suggestions in the comments. I have all sorts of ideas and then I open up notepad and all I can manage is one or two horrifically-formed sentences which I would be embarrassed to put my name to. To which I would be embarrassed to put my name. You see? So I'm afraid for now we'll just have to settle for this rambling hotch-potch of miscellaneous Thoughts.

My cold got better, I managed with just one day off work when it was at its worst and there was a fever to go with it which I think is fair enough.

Steve and I have done lots of Interesting Stuff and I have gone "ooh, I will enjoy blogging about this" and then tried to write a post and not got anywhere. So for now you'll just have to have the bare bones and add your own detail:

National Sea Life Centre, Birmingham.

Steve and I went with one of Steve's friends. They took lots of photos, you can see Steve's photos here. It was both soothing and interesting watching the various inhabitants of the tanks swimming about. The HUGE turtle was especially serene, and much more graceful than you would expect of something weighing more than two adult men. Accessibility was great, it's a step-free environment and I only saw one staircase, for which there was a small lift equivalent within a few metres. However wheelies should be aware it's a lot of slopes - the building has a surprisingly small 'footprint' but is multi-storey - so pushing assistance is recommended.


The Roald Dahl Museum and Story Centre.

As a lifelong Roald Dahl fan, I have wanted to go to this since it first opened. Encouragingly, Steve and I spotted it in the Rough Guide to Accessible Britain so off we went. It was everything we hoped for. The Archive has all sorts of original material, from first drafts of books to letters from his publisher, from the telegrams sent to his parents to congratulate them on the birth of their son, to the regular letters home that he wrote throughout his life. The museum has some of these items on display in museum cases, with the items changed every three months to preserve them from light damage. That's quite exciting for a fan, to see the actual items themselves. But the heart of the museum is its child-friendliness and hands-on-ness. One particularly thrilling piece was the reconstruction of his writing-shed, complete with a filing cabinet of which one drawer was open - and in the drawer were letters from the publisher and annotated drafts and whatnot, looking for all the world like the real thing (they are printouts of the scans of the originals).

I can't be positive enough about the museum, and it's not just the fan in me talking. Look at the website. The accessibility isn't a joke, either - not only can a wheelchair get everywhere easily, but there are also plenty of seats, carers/PAs can get in free, and other adjustments (such as audio transcripts) are available. The only, only hitch is that due to the historic nature of Great Missenden High Street, there's no immediately nearby parking facilities - it's several minutes' walk, which could cause difficulty for wobbly walkers.

Add in a sprinkling of bowling, knitting, meals with friends, a visit to the park, and some shopping, and I haven't been bored. I just haven't been blogging, is all.

The job advert for my PA was in the paper last week, and there's just under three weeks for all the many millions of hopeful candidates to get their applications submitted. Finding the right person is going to be a delicate balancing act. For instance:

- I must get on well enough with them to be able to trust them with my safety and relax in their company. However at the same time, they're not being paid to be my friend, and the relationship must stay on a professional footing.

- They must be able to accept that I'm the one in charge who decides what we are doing and when and how we are doing it just like any other employer/employee dynamic. However they have to be confident enough to take control of a situation when I'm suddenly slumped up and barely conscious.

You see what I mean? And how does one find out this sort of thing in an interview? I think I may have done better to advertise for "henchman required, to enable disabled evil genius to take over the world. Experience with lasers an advantage," at least then I'd know I was getting the right sort of people applying for the job.

Suggestions for posts welcome, anything to get me writing properly again.

99 Things

I don't usually do memes but this one from Carie looked interesting.

If you join in, please leave a comment so that I can read yours.

Things you've already done: bold
Things you want to do: italicize
Things you haven't done and don't want to - leave in plain font

1. Started your own blog. You cannot imagine how hard it was to resist leaving this one in plain font.
2. Slept under the stars. Although not for an entire night.
3. Played in a band. If you count school orchestra. If you don't, then I haven't and do not want to.
4. Visited Hawaii.
5. Watched a meteor shower.
6. Given more than you can afford to charity. That would be daft. Plus, since cripdom I've become unsure about charities. It seems that they end up doing an awful lot of things that really, our taxes are supposed to cover one way or another. It's not a tragedy that little Bobby aged seven and three-eighths will need to use a wheelchair for the rest of his life, but it's a goddamn disgrace that neither the NHS nor social services will provide a suitable one and he and his family are forced to beg for pity from strangers...

7. Been to Disneyland/world.
8. Climbed a mountain. No, I have quite enough adventure and struggle getting around Sainsburys. You guys climb the mountain and I will stay at the ski lodge making sure the hot chocolate is up to standard.
9. Held a praying mantis. Not a lifelong dream, but I'm not squeamish and will touch/hold anything that is offered (oi, stop sniggering at the back).

10. Sang a solo. You don't want to hear me sing.
11. Bungee jumped. Again, not a lifelong dream, but give me half a chance and a change of underwear and I will be totally up for it.
12. Visited Paris. One day I will actually get my passport sorted out.
13. Watched a lightning storm at sea. Although from the mainland - not while on a boat.
14. Taught yourself an art from scratch.
15. Adopted a child. Although if, when we get to that stage, it turns out Steve and I can't conceive, I would certainly consider it.
16. Had food poisoning.
17. Walked to the top of the Statue of Liberty. Not likely, see No 8.
18. Grown your own vegetables. Mandy started it and I put it in a sack of compost and it grew and bore fruit. It counts.
19. Seen the Mona Lisa in France. I'll be happy to look at it and say "ooh" if I happen to be there, but I'm not likely to go out of my way to see it.
20. Slept on an overnight train.
21. Had a pillow fight.
22. Hitch hiked.
23. Taken a sick day when you’re not ill.
24. Built a snow fort.
25. Held a lamb.
26. Gone skinny dipping.
27. Run a marathon. Not likely. See No 8.
28. Ridden a gondola in Venice. Wouldn't say no, but not desperate.
29. Seen a total eclipse.
30. Watched a sunrise or sunset. Many times - living by the sea has pluspoints.
31. Hit a home run. But only on WiiSports.
32. Been on a cruise. I want want want to do this. A couple of weeks in a self-contained environment headed for somewhere with nice weather, with all needful things close at hand (rather than having to arrange lifts or taxi rides), with the time and the facilities to do nothing but unwind, rather than having to go to work and plan epic journeys to Sainsburys and keep on top of the laundry and housework - it's my idea of heaven! Sadly it will never happen as it's Steve's idea of hell. And if I do it without Steve, then as we have seen, I will come home to enough stored-up housework to make the holiday and relaxation a complete waste of time.

33. Seen Niagara Falls in person. See No 19.
34. Visited the birthplace of your ancestors. See No 19.
35. Seen an Amish community. See No 19.
36. Taught yourself a new language.
37. Had enough money to be truly satisfied. Satisfaction for me is not having to panic about how to cover the essentials (eg rent, bills, food, medication, transport). Everything else is window-dressing. Enough money to own our own home or go on a big holiday would be nice, but isn't integral to feeling satisfied with life.

38. Seen the Leaning Tower of Pisa in person. See No 19.
39. Gone rock climbing. See No 8.
40. Seen Michelangelo's David in person. See No 19.
41. Sung Karaoke. Least said the better.
42. Seen Old Faithful geyser erupt. See No 19.
43. Bought a stranger a meal in a restaurant.
44. Visited Africa.
45. Walked on a beach by moonlight.
46. Been transported in an ambulance.
47. Had your portrait painted. Cartoonists count, right?
48. Gone deep sea fishing.
49. Seen the Sistine chapel in person. See No 19.
50. Been to the top of the Eiffel Tower in Paris. Is there a lift? If yes, see No 19, if no, see No 8.
51. Gone scuba diving or snorkelling.
52. Kissed in the rain.
53. Played in the mud.
54. Gone to a drive-in theatre. Never even seen one of these.
55. Been in a movie.
56. Visited the Great Wall of China. See No 19.
57. Started a business. Um. Does a school newspaper when I was 12 count? With no teacher involvement beyond getting my English teacher to agree to back me up when asking the head for permission, I raised the capital, I approached the school reprographics unit and negotiated a deal for paper and photocopying, and I organised a "staff" of other students. As a group we wrote the articles and sold it at breaktimes, getting out approximately one issue per half-term, except the time when we devoted the whole front page to reporting on a food fight, when I was called in to see the head and told that since a lot of copies went home and were seen by parents, the school would not allow me to continue with the paper if I distributed that issue. We made a profit even after repaying the capital and paying the running costs and providing prizes for several competitions. At the end of the year we were all leaving the school so we left some 'start-up capital' with the head of English, to give to anyone who was interested in doing a paper again, and split the rest between us - it wasn't a fortune, but it was enough for me to go to Woolies and buy all the stationery and bits and bobs I needed to start high school.

Now I put CDs in boxes, for a few pence per hour over minimum wage.


58. Taken a martial arts class. Aikido, when I was 16/17. It's supposed to be one of those forms which is pure self-defence, more about agility, poise and using your attacker's strength against them, than about competitive fights, big muscles and breaking bits of wood. As such it often gets marketed as very suitable for women. This is probably why I was usually the only female in the group of about 15 students.

59. Visited Russia.
60. Served at a soup kitchen.
61. Sold Girl Scout cookies.
62. Gone whale watching. See No 19.
63. Been given flowers for no reason. Well, for no reason beyond "I went into the supermarket and saw the flowers and thought I'd get you some." I get chocolate for the same reason. Steve is good like that.
64. Donated blood. And in the process, got over my fear of needles. I'm not allowed to donate any more, which is a little bit upsetting although I understand why.

65. Gone sky diving.
66. Visited a Nazi Concentration Camp.
67. Bounced a cheque.
68. Flown in a helicopter. Although it's a bit No 19-ish.
69. Saved a favourite childhood toy.
70. Visited the Lincoln Memorial. See No 19.
71. Eaten Caviar.
72. Pieced a quilt.
73. Stood in Times Square. See No 19.
74. Toured the Everglades. See No 19.
75. Been fired from a job. Nope - only ever left of my own accord or on health grounds.
76. Seen the Changing of the Guard in London. See No 19.
77. Broken a bone.
78. Been on a speeding motorcycle. I ride on the back of Steve's sometimes. We have been on the motorway, so we've done "speeding along" in the sense of "going really quite fast", but I can't see the speedometer from behind him so I have no idea about whether we've been actually speeding as in "going at illegal speeds".

79. Seen the Grand Canyon in person. See No 19.
80. Published a book.
81. Visited the Vatican.
82. Bought a brand new car.
83. Walked in Jerusalem.
84. Had your picture in the newspaper. Local paper only. I was a kiddie, it was something to do with the library. The clipping is in with my envelope 'o' childhood Stuff.
85. Read the entire Bible. Although I do follow it on The Brick Testament and I have more of a working knowledge than you might expect - my agnosticism is a considered and informed personal conclusion rather than a frivolous abandonment of my Christian duties.

86. Visited the White House. See No 19.
87. Killed and prepared an animal for eating. I reckon I could, and I'd certainly give it a go if I had to - I have no problem with the idea of eating dead animals or handling dead flesh. But I suspect it is be better, not only for me but also for the animals concerned, to leave slaughtering and butchering to people who know what they're doing and have the right tools for the job. I'd be more likely to give the animal a nonfatal wound which would not only make it distressed and fight-y but also make it so slippery with blood that I wouldn't be able to grab hold of it to finish things. Not good for anyone.

88. Had chickenpox. I *think* I was vaccinated.
89. Saved someone’s life. I'm not going to say I want to do this as that would require someone around me to be in a life-threatening situation.
90. Sat on a jury.
91. Met someone famous. If it was someone famous who was actually worth admiring, see No 19.
92. Joined a book club. Keep meaning to do this, in a sort of end-of-a-roll-of-sticky-tape way. But not an online one. I meet lots of people online. I need to meet more people in the real world.
93. Lost a loved one. I have very little experience of death. My great grandmother, my grandfather, and one of my uncles have died within my lifetime - but while I loved them I wasn't exactly in frequent contact with any of them and we didn't speak the same language, and we were discouraged from attempting to make the journey to attend the funerals. I suspect that losing someone very close, with whom you have a frequent or very intimate association, is something very different.

94. Had a baby. If we ever get round to it. My biological clock, which has never really been silent, is clanging that my prime fertile years are all but over. My rational brain is shouting that first we need to find a different, more suitable house (even if we can't buy, renting would be fine) with, for instance, a toilet on each floor and so on. My neurotic brain is shouting that something is bound to go wrong and that if we need any kind of fertility assistance, we'll only get it if we start actively trying to conceive before I'm thirty and that means we've only got three years left. My preferred prospective co-parent agrees with the theory of the two of us having a kid but is reluctant to take steps towards actualisation.

95. Seen the Alamo in person. See No 19.
96. Swum in the Great Salt Lake. See No 19.
97. Been involved in a law suit. I don't have the capacity to deal with something like that on top of my job, housework, life essentials (like showering and grocery shopping) and so on. This is why the DDA has no teeth. It is dependent on disabled people pursuing lawsuits, and many of us do not have the time/energy/physical wherewithal/mental stability to do so.
98. Owned a mobile phone.
99. Been stung by a bee.

Totals:
Things I've already done: 28
Things I want to do: 8
Things I haven't done and don't especially want to do: 63

From which we surmise that I'm an apathetic underachiever who doesn't live in America and doesn't get excited about going to look at things "in person".

To balance things up: got married; got divorced; broke up a fight; danced on a bar; climbed a tree; slept with someone old enough to be your parent; done volunteer work; been written poetry by a lover; partied until the sun came up; ended a violent and abusive relationship; watched every episode of a TV show; swum in the sea; protected a child from violence; been sincerely thanked for making a positive difference to someone's life; got the hang of cooking something your mother used to make; admitted being wrong; persuaded someone in authority to change their mind; built a computer from parts; bought something beautiful even though you know you will probably never use it... there we go, I feel better about my life now.

2008 - A Roundup

I did this last year so I might as well do it this year too. Even though this time I haven't had any major life changes like moving house or getting a new job, it's worth bearing in mind that Steve and I started 2008 with a spirited attempt to blow ourselves up so the entirety of the last 12 months has been something of a bonus. It's also slightly disturbing that my first complete 12 months of post-getting-ill paid employment has been so centred around the benefits system.


January
In contrast to last year, my birthday was a bit of a non-event, consisting of me buying myself some cake to take into work, and Steve getting a card for me while I was out. Over the next few days things improved. Full of positivity about life, I started an attempt at some self-administered Graded Exercise Therapy which lasted all of about two days before Steve begged me to stop it and I felt cruddy enough to acquiesce. The extra pain, faints, weakness and cognitive difficulties from those days lasted almost two weeks.

February
February saw the Department of Work and Pensions Secretary Peter Hain leaving his position after a row over his failure to disclose donations for his failed attempt to become deputy leader of the Labour Party. His defence consisted basically of trying to prove that he was incompetent rather than a fraudster, a defence the DWP refuses to hear from its "customers" but apparently finds acceptable from its management. His replacement, James Purnell, started gleefully outlining "reforms" to the welfare system, based largely on a report from a City banker who had spent three whole weeks studying the system before spouting a lot of inaccurate data largely based on his own personal opinions. I got very upset about this as I was struggling with work and an overwhelming awareness that if I didn't cope, I would have to throw myself on the mercy of the "reformed" system.

I was also struggling with a Tax Credits cockup from several years ago, which makes it even more baffling why I decided to re-apply for Disability Living Allowance.

March
I got my forms finished, mostly by typing it up rather than trying to fit the ins and outs and variations of my day-to-day difficulties into the boxes.

"The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks."

My new GP confirmed that she would be supporting my DLA claim, and several people kindly wrote supporting statements about their direct experience of how my condition affects me. Just as I got the DLA bundle completed and sent off, the Tax Credits people started up again...

April
While the ball rolled on the Tax Credits and DLA issues, I wrote the most popular blogpost I have ever written... The Gorilla Theory. It gets linked to all over the place and people keep telling me how much it has helped them. I'm very proud of it.

Five months after I had alerted them to the issue, the DWP sent me an amusing letter about how they had paid me too much money when I started work (they forgot to stop putting my Incapacity Benefit into my bank account despite me asking nicely) and now they wanted it back. It was amusing because even though the error was entirely theirs, the letter implied that it was my fault and I'd actively claimed the money on purpose and threatened me with the full weight of THE LAW if I did not arrange to repay the money immediately.

May
As is becoming usual, May started with Blogging Against Disablism Day. The hot disability topic was still the welfare reforms but I opted to write some musings about equality and difference:

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

I started to think about my career direction (or lack thereof) and Steve scared the hell out of me by taking half a dose of paracetamol.

My DLA claim was turned down, but unlike 2007, this time I was ready to fight it to appeal.


June
I finally bit the bullet and admitted that 20 hours over 5 days packing CDs is too much for me, and asked for help from everyone I could think of. The agencies who are supposed to help were the least helpful of all. My boss and I agreed that I would work 17.5 hours over 4 days and have Wednesdays off as a sort of mini-weekend to recover from Monday and Tuesday, and prepare for Thursday and Friday. This has worked incredibly well for me and I haven't needed a sick-day since.

The Tax Credits Appeals and Complaints department reviewed my appeal bundle and agreed that I don't owe them any money. I could claim Tax Credits as a working disabled person and be something like £3k a year better off, but I don't dare.

Remploy offered me £50 to falsify information, and to make it even worse they wouldn't even tell me what that information was - just sent me signature pages of forms.

July
Steve finished his exams and started work again and our financial position eased up almost instantly. He could have claimed benefit when our savings ran out, but having spent a couple of years watching in horrified amazement the merry dances that people like Pip, Bendy Girl and I have to perform not just before and during our genuine and necessary claims, but for months and years afterwards, he decided not unreasonably that he'd have to be starving first.

August
I didn't blog at all in August. There was a lot going on and I didn't have the brain-time to write any of it up. Steve and I went out and about a little bit more with our new-found income, but we also had to adjust to the new balancing act of my care needs and the effects of my job vs him being at work all day and no longer having all the time in the world for looking after me and keeping the household running. Social Services assessed me for help and I was approved for Direct Payments for care, as well as an emergency backup care plan.

I applied and was interviewed for a part-time admin job - didn't get it, but there was lots of positive feedback and it was a good confidence boost. We also went to Jiva and Munkt0n's wedding which was quite possibly the loveliest wedding I have ever attended.

September
With my DLA appeal drawing closer I found myself unable to concentrate properly on anything. Christmas orders started coming in at work and keeping on top of things, while do-able, was taking everything I had.

October
I won my DLA Appeal. It was backdated to the application date in February which meant I was suddenly owed a lump sum in excess of £2,000. I am proud of having introduced the Appeals panel to Spoon Theory.

After some prodding, I also got an official response about the Remploy problems from back in June. It was as pathetic as I have come to expect.

Then it was off to Lowestoft for a week's holiday with Pip and The Boy. This would have been a great idea, and I felt extremely well-rested, except for the bit where I came home to discover that I had to fit in a whole lot of extra housework because while I'd been away Steve had been having one of those weeks.

November
I finally got to go into town to open a bank account in order to receive Direct Payments, to pay for the care Social Services assessed me as needing.

"The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA..."

I had another job interview which didn't go so well as it turned out to be for a full-time job, and much as I would like to, there is no way I can do full-time work.

Then my laptop died with a virus of great horribleness. Never before had I picked up a computer virus which my antivirus program couldn't swiftly and efficiently dispatch. We ended up with no real option but a complete fresh reinstall of Windows and then very carefully scanning and replacing files from backups. I know I'm an addict, but I didn't realise it would upset me as much as it did. I will be more careful.

December
Steve and I underwent the ultimate test of the strength of a relationship - we went to IKEA. We survived.

The Welfare Reforms mooted in February came to the fore yet again. The banker's report is being treated as rock-solid fact, and the BBC is somehow combining stories of mass redundancies with the stereotypical image of benefit claimants as scroungers who cannot be bothered. It scares me.

I got my Christmas Tree and decorated it, and with a stack of assorted presents underneath it was the centrepiece of a wonderful Christmas.

And now, I understand from my charming assistant that the fireworks have been purchased and the weather tonight looks to be cold but clear. Hopefully, see you on the other side - Happy New Year!

Bloggers 1, MP 0

Two weeks on from the latest episode of the Remploy saga. Several thousand people have read that post, mostly thanks to links from prominent bloggers including Wat Tyler and NHS Blog Doctor.

As well as writing about the issue on my blog, I contacted my MP via the incredibly useful and informative They Work For You website. And the ball rolled...

The result of writing to my MP so far has been a pale yellow letter which arrived this morning, three lines thanking me for my correspondence and telling me that the matter is being raised with a "ministerial colleague" at DWP.

The result of blogging, however... the "Quality Matters" team at Remploy have seen my blog. They then did enough detective work to find my email address (not difficult given the amount of information they hold about me, but slightly more complicated than just clicking an 'email me' link) and sent me a nice email telling me that they are taking it seriously and starting an investigation. The investigation will be led by "a senior manager" from outside the department with whom the issues originated. They've given a timescale and provided me with a Service Level Agreement. They also replied immediately to my request that I be contacted by letter or email rather than by telephone. Even despite my usually high levels of cynicism, I'm feeling quite hopeful that the issue will be noted and taken seriously and maybe even avoided in future.


I also found out this morning that my MP is actually (sort of) connected to the DWP. He's one of the MPs who appears in this BBC News story which does a sterling job of confusing suspected or "potential" fraud, and overpayments due to cockups by the DWP, with actual Criminal Benefit Fraud as wilfully and successfully perpetrated by Very Bad People. Sigh.

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.

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.

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.