It's not Bridezilla to want access

Written for Blogging Against Disablism Day 2010.

Regular readers will know that my life at present divides into two main areas:

1. Planning my forthcoming wedding.



2. Running and developing my business.

While working on these projects, I have again and again encountered two important truisms:

1. "Wedding" translates roughly as "add another zero" - there's a lot of money involved.



2. Business is about persuading other people to give you money.

Everyone happy with these starting principles? Then let's move along to the disability angle.

I am a part-time wheelchair user. At my wedding, I will be walking down the aisle (I'm hoping to get one of these gorgeous walking sticks for that bit), but I will be using a wheelchair right up to the ceremony room door and for most of the reception. There's just no other way that I will last the whole day and yet still be able to participate.

This adds a whole range of access requirements. At other people's weddings, I'm prepared to shuffle in side entrances, withdraw to the car for a nap, sit on the floor or crawl up steps if necessary. On occasion I've attended for just the ceremony or just the reception depending on the preference of the happy couple. But damned if I'll be doing that at my own wedding. It's not Bridezilla-ish to put the needs, wishes and comfort of the bride and groom directly at the top of the priority tree.

And I swear, it's like watching a bathtub emptying as the possibilities dwindle to almost nothing on the simple query "can I get in?"

Venue is the obvious one. As a small business owner, I have been repeatedly made aware that I have a duty to consider how disabled people might access my products or services, and what adjustments I might put in place to improve access, even if it is not reasonable for me to make those adjustments at this stage. Make it as easy as possible for as many people as possible to give you as much money as possible.

Some places are honest enough to simply declare on their websites that "owing to the historic nature of the property" they'd like wheelchair users to just f--k off. They don't phrase it quite like that but it's the message loud and clear - they're not allowed to say "No Blacks, No Dogs, No Irish" any more but the cripples can Keep Out. Worse than that, though, are the ones who haven't given it any thought at all. And worse still was the hotel who claimed they had great access throughout, invited me to visit, and then we found out that the ceremony and reception rooms had decent access but there was no access to any of the other facilities included in their wedding package, such as the Bridal Suite or any other 'deluxe' room, the swimming pool and spa, the gardens, the bar, the restaurant...

I could go on for days about the barriers I've encountered, but suffice to say that based on physical access alone, from the 50 or so local venues in a range of styles and prices that a non-disabled bride could choose from, my pool of choice was down to about 10 (call it 8 because I am NOT getting married at a Holiday Inn) and it took a couple of hours of emails and phone calls plus several of my precious Social Care hours to find out that much.

I should not have to work so hard to try and spend a Wedding amount of money.

Wedding dresses are the same story. I need to be able to stand up and sit down in my dress (or possibly trousers, might be easier, not sure, but we'll stick with saying "dress" for now) and still look bridal. So the chair is definitely going to have to come in with me for dress shopping and fittings.

Another half hour or so on the phone reveals that there are NO wheelchair-accessible bridal shops in Leamington.

There's ONE in Warwick, the next town along. Possibly two - the person I spoke to told me something something side entrance should be wide enough because they're sure they've had "wheelchair people" in the shop before. The others were basically trying to persuade me that I should be prepared to crawl up and down the stairs (remember these people knew nothing about why or how I use a wheelchair) and that maybe I could get a friend to carry the wheelchair up the stairs for me.

I wonder, do they propose that non-disabled brides should attempt to do an assault course with a bridesmaid on hand to do weightlifting, just for the privilege of handing over a Wedding amount of money?

One even told me "well you have to make the effort." Excuse me, no, I don't. I am the customer. You are the business. You have to make the effort to get my money by making it as pleasant and easy as possible for me to hand it over. Not by treating me as an inconvenience and expecting me to work for it.

Business owners have a duty to consider how disabled people might access their products and services, and what adjustments might improve access. Failing to do that, particularly in the wedding industry, means failing to understand those two simple starting points - that "wedding" means "add another zero" and that business is about persuading other people to give you money.

I am enjoying the wedding planning; I have found a venue that meets our needs and I'm sure I'll find a dress as well, one way or another. But I certainly don't feel that my experiences are matching those of a non-disabled bride.

Blogging Against Disablism Day will be on 1st May, 2010

Once again, the esteemed Diary Of A Goldfish is hosting the blogosphere's annual Blogging Against Disablism event. As usual, this is not a carnival of previously posted material or a "best of" selection - it's a co-ordinated effort of many people all posting fresh material on the theme of disablism.

Full information is available at the Blogging Against Disablism Day signup page along with links to archives from previous years.

Remember, you don't have to be disabled to join in. Disability is not an isolated experience and it's not something that anyone is immune from. I know I link to this every year, but I'm going to do it again - Lady Bracknell's One in Seven post spells out just how relevant, and how unacceptable, disability discrimination is to all of us.

You don't need to write an essay. You don't need to write at all. You can post video, audio, artwork, any format you like. This is about making our voices heard.

You also don't need to be filled with righteous anger or have your protesting hat on. There's room in BADD for everything and that includes some nice positive examples of the change that is slowly but surely happening. And you don't need to worry about getting all the words right - as usual, we have a Language Amnesty to account for cultural differences and to allow those who aren't politically involved to post without fear of being attacked for failing to use the most 'current' terminology.

Hope to see you there!

Indescribable

In my last post, I talked about the Twitter event Such Tweet Sorrow, a production of Romeo and Juliet being played out in real time over five weeks.

We're one week in and it's still a really tricky concept to describe. The biggest problem is that first, you have to describe Twitter itself which is still really hard to do for anyone who isn't already using it. Trying to describe the Such Tweet project itself, on top of that, before you can even begin to talk about how much you're enjoying it, what you think about it, how it makes you feel... it's nigh on impossible.

I'll give it a go anyway. I think Such Tweet Sorrow is most like an immersive fantasy game along the lines of Dungeons and Dragons or perhaps Knightmare. A bunch of people improvising within their given character descriptions interact with you; you are supposed to pretend that they really are those characters. Except that it doesn't require special equipment, like-minded friends, pens and paper, or time set aside to play, and it continues 24/7. As a Twitter user, it slots almost unnoticeably into the life which I am already living.

That's the bit that makes it a little disturbing. Due to the circumstances of my life - I am disabled, I work alone from home, I cannot drive and am waiting on a decent wheelchair - most of my interaction does happen online, and as such I do have several good friends (not to mention clients and suppliers) who I have never physically met.

There are also dozens, if not hundreds, of people who I consider to be part of my wider social circle. We're not friends in the sense of having heart-to-heart private conversations about our innermost feelings, but there's some shared interests, some common acquaintances, and we've had a couple of brief direct exchanges - we're friendly even though we're not bosom buddies. This is the area that the Such Tweet cast fall into. The stream of posts about whatever happens to be on their characters' minds - the progress of a football game, a trip to the pub, a crap day at school - is melding seamlessly into all the other incoming tweets about Dr Who, Mad Cap'n Tom's bid for Parliament, current affairs, Naidex 2010, and biscuit preferences. Every so often, I reply to an incoming tweet. Every so often, someone replies to one of my tweets. It's incredibly normal social networking and an outsider with no knowledge of Shakespeare or the Such Tweet project would probably not be able to pick out the fictional characters.

With it all being mixed in, the line between characters and real people gets blurred. I am reacting to the characters' tweets in the same way I would react to those of real people. The most striking example of this for me so far was yesterday, when @laurencefriar sent out a tweet about meeting some "courageous" disabled football supporters. Anyone who knows the Ouchers knows that the best way to get our hackles rising is to start throwing around words like "courage" "brave" and "inspiration" and I simply couldn't help the way it made me feel (ie: angry). I had to seriously remind myself that @laurencefriar is a made-up character who is supposed to be the sort of person who comes out with tripe like that. Then I thought, well, I'm supposed to respond, an emotional response to well-performed characters is entirely permissible and means the actors are doing their job right.

But it's made me start to worry about what's coming. The writers have admitted that they're not observing a religious adherence to Shakespeare's storyline, but it's safe to say that the basics remain in place - which means it's not long to go before there are a couple of violent deaths in my social circle.

If I find myself getting angry about "courageous" then who knows how I'll react to that?

Such Tweet Sorrow

And now for something completely different.

There is a bit of an art project happening on Twitter for the next few weeks. Under the title Such Tweet Sorrow, the tale of Romeo and Juliet will be played out, in real-time, in the social media environment.

No, we're not talking about a line-by-line recital of Shakespeare's work delivered no more than 140 letters at a time.

We're talking about a handful of people, each with a role that mmmmmmore or less translates over to modern times, tweeting in character about events, thoughts, feelings, as the storyline unfolds. At the moment they are setting the scene - so, for example, Juliet is tweeting about arranging a party for her sixteenth birthday in a couple of weeks, and Friar Laurence is blethering on about community outreach projects for disaffected youth, and Mercutio and his friends came fourth in the pub quiz. There's also a certain amount of incorporation of other social media, such as Juliet putting a guided tour of her bedroom on YouTube.

I'm quite fascinated by it.

One of the characters has already begun engaging with the audience - Mercutio tweeted that he'd woken up with a hangover and got in a discussion with a 'real' twitter user about hangover cures. From reading the tweets of one of the writers, it looks like the characters don't have to do this, but he's hoping they will. So am I, although I think it'll be a fine line to walk as they gain popularity... especially what with the whole "you cannot control twitter" can of worms. There's a space on the site for the #suchtweet hashtag and I'm not sure that's ever ended well.

The really confusing bit is that if the characters were real people, I'd have stopped following them already. Juliet is a naive and irritating 15-year-old over-privileged princess whose exclamation-mark use alone would have had me hitting the unfollow within an hour... but that's exactly who the character is supposed to be. Tybalt is the sort of sulky brat I'd prefer to avoid meeting, and while Mercutio would be great fun at a party I wouldn't give him my phone number. It's bizarre to keep reading all their tweets and reacting with "oh, FFS," and then remember that this is who they are supposed to be and it's integral to the story that they are vapid/sulky/whatever.

I'll be interesting to see how it develops over the weeks, both in terms of the characters and in terms of the audience. Usually you only care about what's going on in Verona for a couple of hours and it's constantly fast-forwarding to the 'interesting bits', not sure what will happen with this slow-burn thing.

I'm also really hoping to find out more about the smoke and mirrors part of it as well, the planning and preparation and involvement.

Test drive

On Friday I had my test drive of the e-motion power-assisted wheels suggested by my Access to Work assessment.

The Invacare rep got the chair out for me and I sat in it for a while with the power-assist turned completely off, gently pushing backwards and forwards and just getting used to where everything was. The weight saved on the chair was added to by the wheels so it didn't feel too different to my existing manual chair (this is a good thing as it means if the power dies I will still be able to get myself out of the way). Then we turned the wheels on to the low setting.

Wow.

No exaggeration, I was propelling it with my fingertips.

It was a bit disconcerting... kind of like a combination of walking on stilts, and trying to stand on a balance board, you know what you should be doing but it's difficult to suppress your 'normal' reactions. In a standard manual chair, if one wheel is going a bit too fast you either tug on that rim a bit to slow it down, or you push the opposite one a bit harder to catch up. But the wheels exaggerate the force applied... I didn't come off the pavement or into anyone's garden, but it was a near thing for the first minute or so.

A couple of hundred metres later we reached the end of the block and the first uphill slope. Two metres in and I could feel some resistance (although bear in mind that with a non-powered chair I wouldn't have even got this far). So I clicked it to the higher setting, and effortlessly glided up to the road.

Now the learning really started. The kerbs around here, even the dropped ones, are a bit too vicious to just roll up. So I had to learn how to tip the chair. The way you tip a chair is by gripping the wheels and shifting your bodyweight... this allows the small front castors to get onto the pavement, and then you can tip down again and give the wheels a good shove to get properly onto the kerb. Obviously when the wheels are powered it's easier to do the shove to get the big wheels onto the pavement, but it's that bit trickier to do the tipping. Happily the wheels are paired with anti-tippers, sort of stabilisers that stick out the back so that although you can tip back a bit, you're less likely to go right over. More on that later.

That dealt with, we were on to the main slope. This part of the hill is quite steep. If the wheels were going to fail anywhere, it was going to be here, and while I hoped it would work, I was entirely prepared for getting halfway up and needing a rescue.

Nope. Straight to the top, and talking the whole way, too. We had a bit of a rest at the top - the rep needed to get his breath back after walking up the hill, and I needed to tweet about having got off the estate! I was a little bit sore, obviously, but rather than it being a muscular pain from over-exertion when pushing, it was more just the unaccustomed repetitive shoulder movement as I moved my arms back and forth to touch the wheels.

Downhill was obviously much easier. Again, the intelligent wheels made a big difference - rather than rubbing my hands and clicking my wrists trying to pull back against an uncontrolled freewheel, I just had to keep light contact which prompted the wheels to apply resistance to stop themselves getting too much speed. The tipping for the kerbs was easier second time around, and before I knew it we were back home, where we pulled up the spec sheet and started talking options.

As far as the chair goes: the basic bare-minimum cost of the chair is £1,129, and the added bits and bobs that are contractually compulsory add-ons for it to accommodate the e-motion wheels (superior axle fittings and suchlike) bring it up to £1,528. This pretty much matches my AtW grant for the chair which is £1,526.

There are a couple of other options I want on the chair which don't come as standard. Steve and my PA both have quite small cars, so I want to get the fold-down back to make the chair more likely to fit in the boot... that's an extra £265. I will still need someone pushing when I'm having a rough time or if the batteries die... Steve is very tall, my PA is my height, so height-adjustable handles, £174. Other options that would be a bit nice but not quite as important are the bag that clips in underneath the seat at £34, a seat cushion at £45, and mud-guards which are £108 (fixed) or £193 (removable). I think I'm probably not having those.

Then there's the wheels themselves, rolling in at a cool £3,995. My grant for the wheels is... £3,995. How handy! Unfortunately, those anti-tippers mentioned above? The ones that are an absolute necessity if I want to have any chance of mounting the rubbish kerbs near my house without landing on the back of my head in the road? An extra £240. I'll pay it, obviously, and I'm not complaining by any stretch of the imagination, but it's a bit of a startling unplanned expense whilst being the sort of "option" that I wouldn't really class as "optional". I would have really expected that to have been included in the original assessment along with axle fittings and brakes.

I didn't want to let the rep take the wheels away, even though the chair they were on for the test-drive wasn't quite the right size for me and a horrible colour. I'm getting really impatient to go out, especially with the sunshine! The plan is that next week, once I've really ironed out exactly what options I'm having and made my final colour choice, the rep will visit again to take a deposit and the final order. After that, it should be about two or three weeks before I can take delivery.

I am very, very, very excited.

Prince's Trust

I had my panel interview with the Prince's Trust the other day, and the good news is they thought I was great, so I'm getting all sorts of support from them.

The most important part, to me, is being put on their "business mentor" scheme, where a young entrepreneur (I still count as young by their definitions, how good is that?) gets matched up to an older and more experienced businessperson who can offer guidance and support. This neatly bypasses the "if you know it all about business, why are you working for a teacher's wage rather than running a successful company?" question asked of all business studies teachers throughout the ages.

I have nothing but praise for the Prince's Trust so far. Everyone I've dealt with has been positive and flexible, and although there have been some unexpected access barriers I've revealed that they hadn't noticed previously, these have been dealt with rather than ignored. Admittedly not with perfect solutions, for example I had to travel to Coventry for the panel meeting and I had to pay my PA for that myself, which wasn't cheap - but on the other hand we shifted many of the things which would normally be onsite meetings to being email or phone conversations, or on one occasion, an advisor coming to meet me somewhere more local. I definitely feel like I've been met half way.

There was one marvellous moment in the panel interview where one panel member, trying to put me at my ease, started to say what I'm sure he says every time, something along the lines of "now please don't worry, I'm sure every applicant who sits in that chair feels a bit nervous but we're lovely really..." he got as far as the "ch" of chair before he remembered that he had moved The Chair because I was, in fact, sitting in my wheelchair. There were about two seconds of verbal hang-time before he grasped the word "position" and I swear, I felt like giving the man a round of applause for a wonderful save.

All in all, it's a definite improvement on the previous "business advisors" I was being passed around.

Wheelchair assessment

Yesterday I had my Access to Work wheelchair assessment.

Wheelchairs are tricky things with strange criteria. If you tick all the NHS boxes, then you get a "voucher" towards the cost of a chair (although you may have to supplement this with hundreds if not thousands of pounds of your own money in order to get a chair you can live from rather than one which merely keeps your backside off the ground). If you don't tick the NHS boxes, then you get bog-all.

I don't tick the NHS boxes. My mobility is limited enough so that I warrant a "normal" manual wheelchair. However, since my arms are affected in much the same way as my legs are, a manual wheelchair is only any good to me if I have someone else pushing it. Obvious solution: a powered wheelchair. Unfortunately for me, to be eligible for a powered wheelchair you have to be needing to use a chair to get about inside your own home - which I don't.

I do of course have my scooter but to be honest, I've barely used it since I started working. It was great when I could go out on it for a few hours and then sleep for the rest of the day and most of the day after... but these days I just don't have the spare energy to be able to drive it all the way into town and back. It's also too big to put in a car or take in a taxi. And in work terms, it hardly enables me to present a professional image - I never cared if the shop assistants in town saw me rolling up windswept, rain-soaked and knackered from the ride in, but for potential client meetings it's a different ball game.

All this led me to ask Access to Work if I could have help getting a powered wheelchair from them. Hooray! They said yes, I could, although it would be subject to a wheelchair assessment from one of their people, and I would have to provide a letter from my doctor confirming that it would be medically appropriate and that I was fit to use a powered chair. Fine by me, and my GP has been more than happy to provide a supporting statement.

Access to Work sent a very nice man we shall call H to come and assess my needs. First we talked about what I wanted to be able to do that I currently can't do. Locally, I wanted to be able to go to the postbox or the little local post office by myself so that I could post my own letters and buy my own postage supplies without needing to arrange for an assistant or beg a favour. In the surrounding area I wanted to be able to do my banking, visit the main post office, attend meetings with clients or my Prince's Trust advisor/mentor, and access networking events.

Next, out came the measuring tape. Apparently I have very long legs. I need to find out how much I weigh.

Finally we started talking about possible solutions. And this is where I was gobsmacked. I was expecting him to suggest something like this, something that looks kind of like my scooter with the front end taken off.

His idea is more along the lines of a more traditional ultra-lightweight manual chair, but with 'intelligent' powered wheels that work in three ways:

1. Turned off, they are like normal wheels, you hold the rims and manoeuvre yourself about, or someone can push you.
2. Turned on, they are like normal wheels would work if you were really strong, you push the rims with a little push and they use gearing and battery power to go WHEEEEEEEEEL! until you tug on the rims and they apply the brakes.
3. Apparently there is an option for a joystick for completely powered travel, but he was a bit vague on this - he said it was a new product and I haven't been able to dig it up online.

The major benefit of this system would be that my powered chair would only take up the same space as a normal wheelchair including being easily foldable for transport. I also like the idea that if the chair runs out of battery, I won't be stranded wherever I stopped - I can just self-propel myself to the nearest place where it's safe to sit around, and call a regular taxi.

Also it will look much nicer.

He's going to write up his report, Access to Work will approve it or not, and then I can have some test-drives. I'm very excited.

Still on cloud 9

I rather suspect that, no matter what happens in my life, I'm not going to trump my last post for a while yet. Even the business start-up, while consuming a fair chunk of my time, somehow doesn't seem quite as significant at the moment. A really big thank you to everyone who left a comment or phoned or emailed to congratulate us. The whole thing has been like a dream.

Now, of course, I have the new challenge of organising a wedding.

I've made a start on the research and found that it is possible to get legally wed for the grand total of £103.50 and two half-hour appointments a couple of months apart. This consists of £30 each in fees at the first appointment when we give notice of our intention to marry, and then second appointment and the rest of the cash covers the basic civil ceremony at the Registry Office (Mon-Fri only, maximum of 8 guests) and a copy of the Marriage Certificate.

From there it scales up, sometimes very rapidly. So far the biggest single number I've seen has been somewhere in excess of £5,000, although in fairness that was at a smallish hotel where they reserve the entire premises for the day, night, and morning after, including all the bedrooms, for you and your guests.

I like the idea of having it all in one place, no chances for anyone or anything to get lost or overlooked betwixt ceremony and reception, so I've asked every "approved premises" in my district to send me (a) their wedding brochure and (b) their accessibility policy. Unsurprisingly, only one venue has been able to respond with an actual proper access policy document detailing what is and is not in place. Others, when pressed for a response ("Thank you for sending me yet another copy of your wedding brochure. However before I can get excited about menus, I need to know whether I can actually get into the building...") say things like "there's a ramp kept at reception" as if that answers every possible accessibility question there is.

Even the places that I have visited for other reasons and know to be quite delightfully accessible, don't appear to have an access policy. It's frustrating, not only having to ask, but having so much difficulty getting a straight answer. Still, I'm gradually getting some options together.

I have some very definite ideas about the timetable and the food and drink. I have some less definite ideas about attendants (a decision likely to be made on who is close and sensible enough to offer support, rather than on family ties or a popularity contest) and guest list. Oh, that reminds me, if you are fairly certain you should have an invite, you should probably email me, because so far I'm not even sure I've remembered all of the family members let alone all the friends.

Things I have not even begun to properly think about yet: rings (yes), clothes (not a meringue), hair (up), makeup (photo-proof yet not orange), flowers (no idea), table decorations (even less idea), photos (Steven, you are NOT spending our wedding night on the post-processing), music, transport, guest accommodation, invitations, and probably a dozen or so other things. I hear there are books for this sort of thing. No idea which ones are worth reading, though. And so it goes round, and round, and round.

Engaged!

Potted Summary for people in a rush who can't be bothered with all these words: This weekend, Evilstevie proposed to me. It was very romantic. I said yes.

Extended Version, with pictures**:

It all started a few weeks ago when Steve borrowed my phone and inserted a "Top Sekrit Weekend Away" at a location defined only as "Elsewhere" for the 13th and 14th of February. Nothing too unusual in that, we've had quite a few weekends away somewhere, why not do it for Valentines' Day? It's as good an excuse as any.

As the weekend drew nearer, Steve told me he was trying to figure out where to eat on the Saturday night. What with it being Valentines and all, it would be best to book a table somewhere rather than trusting to luck, but he was worried about showing me restaurant options because it would make our overall destination less of a surprise. So I told him that I thought I could guess that much anyway. I was fairly certain that he had arranged for us to stay at Rhyd Hir*, a lovely guest house run by the parents of a friend. After a moment's silence and a query about whether I'd been copied in on the reservation emails or something, he confirmed that I was correct.

Although this made deciding on a place for dinner that much easier, it did make Steve fret a little over the next few days about how much I had guessed and whether there was a security leak. Meanwhile, I was being so smugly self-satisfied about my skills of deduction concerning our accommodation, that it never occurred to me there might be more to figure out...

Forward to Saturday, and after a fairly lazy morning we got ready to leave. This took its usual pattern of me getting ready and then sitting with a book for a while so that Steve could flit about the place rearranging his camera bag, swapping lenses, hunting down memory cards, and so on. Nothing odd there. By lunchtime we were in the car and on the road, with a plan to grab some lunch on the way and then enjoy a nice, leisurely drive to Wales, diverting our route as usual on the basis of tea-breaks, interesting-looking brown tourism signs, and pretty photo opportunities.

We found the restaurant about two hours before our table reservation, so instead we went for a bit of a cruise around finding somewhere nice to watch the sun go down, which was very romantic regardless of the date. Then it was back to the restaurant where dinner was both delicious and plentiful - so much so that when we arrived at Rhyd Hir, we eagerly accepted Diane and David's kind offer of a cuppa but emphatically refused their offer of a slice of cake or a biscuit. Once we'd both regained the ability to fold in the middle, we made our way up to a nice, warm, comfortable room where a bed about the same size as my old flat was a very welcome sight indeed.

In the morning I woke up to birdsong outside, which is nice at this time of year when 'dawn' more or less coincides with a reasonable clock-time to be waking up. We'd agreed with Diane and David that we would be down for breakfast at about 9am, but this was another advantage to the small-guest-house not-a-huge-hotel thing - I didn't have to wait for Steve to be up and about and showered and awake so that he could help me traverse miles of corridor in search of a semi-decent cup of tea. I could let him get on with his shower in peace while I took myself downstairs and was rewarded with an actual pot of tea, and indeed a sofa to sit on while I drank it. This was a good thing because it meant I was properly awake to face Breakfast, a meal which deserved full attention and a capital letter. I almost regretted having cleared my plate at dinner the night before. I was utterly baffled by Steve's decision to only have porridge.

After breakfast, and in his role as "father of a friend" rather than "host", David took us for a bit of a tour around the local area, including some spots where Steve could get some nice pictures. Lots of it was places where we wouldn't otherwise have gone - in some parts of rural Wales it can be hard to tell what's a road leading to somewhere and what's someone's three-mile-long private driveway.

David took us back to Rhyd Hir, and then we picked up our bags, said our goodbyes, and set off for Lake Vyrnwy. At one point, we stopped at a viewing area with a gorgeous aspect on the lake. As Steve fiddled with his camera gear, I pulled out my phone and wondered out loud whether it was worth turning it on to see if there was a signal from this vantage point. I really should have noticed the panic with which Steve told me there wasn't and started getting back into the car saying he'd get better shots from somewhere else.

The 'somewhere else' we ended up was a place we'd been to before - still part of Lake Vyrnwy, but rather more secluded. There's a pretty waterfall, a stream, a nice grassy area with wooden picnic benches, and if you know the road (track) is there and where it goes, you can drive right up to it. Steve had told me that he wanted to try and get a nice picture of the two of us there.


So here's the nice picture of the two of us, complete with hillside, waterfall, stream and cuddle. The camera is on a tripod about two metres away from us. The car is about five metres beyond that. There is a remote control in Steve's left hand (away from the camera) which he is using to operate the shutter. I have happily stood there for a couple of minutes in my role as a marker while he takes test shots, scuttles back and forth making adjustments and so on... nothing unusual is happening. Happy with his camera setup, he keeps whispering jokes and sweet nothings to make me smile and every so often he clicks the remote to take a picture. It's all very romantic and lovely and, although I'm starting to get really tired, I'm having a great time and am really pleased that we've had such a fantastic and relaxing weekend.


Then Steve drops to one knee and asks me to marry him. Not believing him to be serious, I basically tell him not to be silly, the weekend has been fabulous and he doesn't have to start proposing in order to make it better.


Steve assures me he is serious, it's not a spur of the moment thing, he's not just trying to make me happy in the immediate sense, and that he has a ring to prove it. If you zoom in on this one, you see me gaping in shock and turning a funny colour, and him looking both smug and relieved that I hadn't guessed all of his surprises...


Predictably I've lost concentration on standing as I am slightly overwhelmed. At least now we both have wet knees. Steve gently reminds me that it is traditional for me to give him a yes-or-no answer. It's a yes.


As the good old Welsh drizzle picks up, we whisk ourselves and the camera back into the car. After a lot of giggling and deep breaths, Steve changes lenses for a shot of the ring in place. We find our way back to the main road and from there to the Lakeview Tearooms for a well-earned cuppa and something to eat - the appetite which had deserted Steve at breakfast has for some reason come back with a vengeance.


As we drive back to civilisation, Steve also explains to me why he'd been so twitchy about my phone. Knowing that we would be out of signal, he'd set up his server to upload this photograph, and tweet it with the words "fingers crossed @batsgirl says yes..." at lunchtime, so that when we got back into signal (after the proposal) our twitterfriends would have begun to respond and it would be all squeaky and yay. But in his increasing pre-proposal anxiety, he started worrying that the tweet might have gone through early, and I might see it before he'd actually asked the question and he really didn't want to inadvertently propose via twitter.

Knitters will notice that the ring has a bezel setting rather than a prong setting, so that I don't have to worry about it snagging on anything. Apparently Steve had done his research and decided on this before he set out to buy, but had a hard time explaining to the various jewellers that yes, prong settings are very pretty, and very traditional, but he wanted to get me something I could wear every day rather than something to store in my jewellery box.

I'm still getting my head around it, and we haven't set a date yet - we've got as far as "probably summertime" and "probably not this year". We're still too busy giggling to have a sensible discussion about practicalities.

*Access note: Rhyd Hir isn't wheelchair-accessible and the bedrooms are upstairs. But it's not much bigger than a large-ish family home and there's parking right by the door. So if, like me, you can manage indoor-wobbling, it's not a big challenge - plus, there's no epic trek along miles of corridor to find anything.

**All pictures are used with permission, copyright Evilstevie, all rights reserved. Click on the pictures to see the flickr pages for each photo, complete with notes.

Make Her Stop

Scrolling through an otherwise innocuous twitter feed this afternoon, when up popped a tweet from Disability Now about the latest antics of Heather Mills.

Now, before continuing, it's only fair to point out that, generally, the online disability community regard Ms Mills as a bit of an embarrassment. Her grasp of disability politics is only marginally superior to that which you might expect of a concussed duckling. The major difference being that the duckling isn't trying to market herself as a disability spokesperson.

Usually it's easy enough to ignore her in much the same way as you might ignore a toddler who is acting up just to get some attention. But then every so often, she ups the ante enough to make me reel in shock that a person can be so stupid.

Yup, Heather says she is making a show where non-disabled celebrities pretend to be disabled so they can, in her words, "see what it's like to live with a disability." Worse, she then goes on to equate this with wheelchair use. All together now:

A Wheelchair Is Not A Disability.
A wheelchair is a piece of equipment you might use if you have any one (or more) of a thousand conditions which involve impaired mobility. Disability is what happens when, despite having appropriate equipment such as a wheelchair, you are still faced with more barriers to your day to day life than one person should have to deal with.

By voluntarily using a wheelchair for a week, you learn what it's like to use a wheelchair for a week, safe and certain that it's only for a week, and that if there was an emergency - or if you simply got bored of playing the game - you could just stand up and walk away.

You don't lose your job in a week. You don't lose contact with your friends in a week. You don't spend months on an NHS waiting list in a week. You don't have to try and co-ordinate moving house in a week. On the other side of the coin, you don't develop your upper body strength very much in a week. You don't become part of a community in a week, or learn the myriad tips and tricks for wheelie life.

In short, there is very little to be gained or lost through playing at "Cripples" for a week. At least, until Heather gets involved...

"We would also get a chef like Gordon Ramsay, blindfold him, and put him in the kitchen for a week."

Leaving aside what Ramsay himself might have to say about it if she tried such a thing - that's just dangerous. If you were to suddenly lose your sight, you would be rushed to hospital. You would be there for a while so that they could attempt to restore your sight, during which time you would slowly get used to the disorientation and to doing certain things by touch. If they could not restore your sight, you would (or at least, should) not be discharged until you've been assessed on how you will manage your basic needs at home, whether there is someone to help you manage, and referred to Social Services and an occupational therapist. You don't get dumped into the middle of a kitchen full of gas burners and sharp knives and told to get on with it. That's a reality-tv experience and has nothing to do with learning about disability.

A small glimmer of hope. The article tells us that "Although she said that the programme is in production, Mills did not reveal its transmission date or which broadcaster had commissioned it." So there is a chance that she's spouting pure, unadulterated rubbish. It's sad that this is the best-case scenario.

Definition of Relief

Regular readers will be aware that I've been waiting for the results of my DLA renewal. To recap, that's the disability benefit that is received regardless of work or income because it is supposed to help cover some of the essential disability-related additional expenses like equipment and transport.

I've been very anxious about this. Partly because of the circus that was my last renewal and partly because my existing award was due to expire at the end of this month, and I did not need my first few months of business to be dogged by personal financial struggles as well.

So this morning, when I heard the post land on the doormat, I wobbled out to the hallway, saw the unmistakable DWP Brown Envelope, reached for it, fell over, and was ripping it open almost before I'd hit the floor...

I have an indefinite award, at the same level I've had for the last two years.

In DWP-speak, indefinite is the word they use because the word permanent doesn't allow for people recovering, and the leaps and bounds of medical science can be unpredictable.

If I get better, then I must let them know and they will reduce the award.

If I get worse, then I must let them know and they might increase the award (or they might decrease it, because who knows where the political goalposts will be?).

If someone has too much time on their hands, they might decide to review my claim at any point just for squits and giggles. The government retain the right to put me under intense covert surveillance (google "Operation Ramesses" (sic)) and generally treat me like a criminal whenever they feel like it. That's par for the course of any kind of claim for assistance.

But it means they acknowledge that I've been in the same condition for long enough that I'm really not likely to change, and that there is little point putting me through the expensive bi-annual mill of renewals and medical assessments and appeals and suchlike. The level of assistance I receive can now be considered as permanent as my condition.

I'm shaking like a leaf. I've got the letter folded open here on my desk so I can keep looking at it to check I haven't mis-read.

If I was a more spiritual person than I am, I might believe this was some sort of reward for having finally taken the plunge yesterday and registered as self-employed. Which was going to be the topic of today's blogpost, but the DLA thing has kind of overwhelmed it.

Getting on with 2010

Life has been (mostly) nicely full since my last post.

The biggest nice thing was that Steve and I went on a little weekend jaunt to the top left north-west corner of Wales. There wasn't a special reason beyond "getting out" and in many ways I think that made it even more enjoyable. We were supposed to have another friend with us, but unfortunately he had to drop out at the last minute... in retrospect that's probably a good thing because I don't think Steve's car was built to hold more than two adults for long journeys.

So we spent Saturday trundling as far as Bangor, where we stopped overnight at a Travelodge, and then on Sunday we picked up a load of leaflets from the foyer to see if there were any particularly appealing attractions. Which there were, but for some unfathomable reason most of them aren't open until Easter. Tsk. So we decided to take our trek to the top left north west corner to extremes, and headed over the bridges to Anglesey, and thence to Holy Island.

On the way we stopped in at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and got a couple of postcards, because we couldn't not. The sun was shining and it was a beautiful day, so we then continued on to the bird sanctuary at South Stack. There was wheelie access right up to the clifftop (and probably right off the clifftop if you weren't careful) and it was lovely to be able to sit there watching the sun, sea, waves, lighthouse, birds, boats, and also looking out for our own noses falling off with frostbite because it was COLD! Still, that's only to be expected for January.

Steve tucked me back into the car to defrost while he ran about taking more photos. I got out my phone to amuse myself and was a little disturbed to find a text message from my mobile phone provider welcoming me to Ireland and advising me of the Euro Roaming Charges. I don't know whether to be peeved at the lack of local signal, or be impressed that my phone was getting a signal from over 60 miles away.

The rest of my enjoyment of the beautiful scenery was from inside the car, but it most definitely was beautiful. We found time to stop at Trefriw Woollen Mills which was nice in a "yay! found yarny!" way, but again, most of the features apart from the shop were closed up for the winter.

Poor Steve obviously had sole responsibility for the driving which meant that he was as shattered as I was by the time we got home. A substantial part of last week was spent with me taking it as easy as possible during the day, to make sure that when he crawled in after work in the evening I wouldn't have to ask him to do as much.

Then on Friday, just as we were picking up again, we both came down with the latest illness sweeping around his office! It was a really nasty one with fevers and yuck - one of those ones where you decide you can't cook, order a takeaway, and then it arrives and you just look at it, knowing that you should eat, but unable to bring yourself to actually do it. Happily it was just a two-or-three-days one and we're both feeling a lot better now.

The business stuff is all but ready to go now, thanks to the help of the Prince's Trust. There's still a few chains to be completed, silly things like: I want to pay for my insurance, domain name, etc, from the business account; I'd rather not start charging things to that account until I'm certain that the capital I paid in has cleared; I won't know if it's cleared until I've had a look in the online banking; I can't look at the online banking until I have all my login details. But the bits and bobs are in place. Mainly I just have to man (woman?) the heck up and take the plunge of registering.

DLA exam

This morning I had my medical examination for my DLA renewal.

A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.

The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.

I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.

And now I can stop worrying until the next letter turns up.

Procrastination... and breathe

Ok, I am admitting right now to all of you that I am procrastinating on the self-employment front.

I will do it and I am making progress. I'm most of the way through my online business course; I have a Marketing Plan and about three-quarters of a Business Plan; I've written a lot of the text for my website. But I'm having to really push myself over every step.

It's not the work involved. The work is not a problem. The trouble is that I have my self-image, my little mental picture of me... and then I have a little mental picture of A Self-Employed Businesswoman... and there's no way I can manage to superimpose the two. I'm not a shoulder-pads kind of girl, you know? That's part of why I'm setting up as an assistant... I keep wondering who exactly I am trying to kid by calling myself a business.

Anyway, there was a major panic this afternoon when my new Business Advisor asked me about my planned start date and told me that the "HMRC definition is once you have set up your website or have got anything with your name on it – i.e. business card, letterhead, leaflet, etc you are in the eyes of HMRC starting to trade," and I went AWOOOGA! because I've been getting ready piece by piece and have, for instance, set up a business banking account and a PO Box weeks ago, but I don't yet have several other important things like insurance or a tax reference number.

Thankfully I decided that if something is causing me that amount of upset, I should seek a second opinion, and HMRC's self-employment helpline allows me to go straight to source. Turns out it runs from when you have the ability to provide your goods or service and are "open for business". So in my case, since I would currently be telling a potential customer "sorry, I'm not quite ready yet," I have not started to trade, no matter how much of the setup I've got in place.

Phew.

However, it has given me a bit of a kick up the bum about the whole thing. As a result of which, I am eagerly awaiting some insurance quotes and doing my best to remember that all I have to do as a first stage is meet the legal minimum requirements - nobody expects me to become SuperBusinessWoman overnight and the shoulder pads are truly optional.

Medical Examination

So, Disability Living Allowance, also known as DLA and a great source of both help and stress. To recap, this is the money given to disabled people regardless of income or work status, to help meet some of the unavoidable extra costs associated with disability, from wheelchairs to incontinence pads to home delivery fees to Meals On Wheels. It's split into Care and Mobility components, awarded at different levels depending on the extent of difficulty you have with each of these aspects.

Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.

As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:

• Their 40-page form, completed with the basic and general answers.


• A typed 26-page document giving the more detailed answers they ask you to provide to their questions, including information about good and bad days, equipment I use and how I use it, support I receive and so on, because these answers just don't fit into answer-spaces the size of a credit card on the form.


• A copy of my current medication and equipment prescriptions.


• A copy of my Social Services care plan and contact details for my social worker, occupational therapist, GP, Access to Work adviser and everyone else associated with my disability needs.


• A statement from Steve as someone who lives with me.


• A statement from my PA as a person who is paid to look after me.


• A medical report from the ME/CFS specialist who formally assessed and diagnosed me.

In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.

But they say that they "do not have enough information."

They want me to be examined by a doctor from ATOS healthcare next week.

I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.

He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.

But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.

I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."

Please?

Winter Heating

As some of you may have noticed, it's been rather chilly in the UK lately. At the risk of stating the obvious, this has an impact on people who can't keep themselves warm properly. There are all sorts of reasons why a person might have trouble keeping warm, but the main ones are connected to age or illness. For instance, there are conditions and medications that play havoc with your 'internal thermostat', there's the issue of poor circulation, there's the issue of being unable to move about enough to adequately boost your circulation, and of course there's the issue of poverty, which disproportionately affects elderly and disabled people.

Never fear, the BBC reassured us:

... the government said it would be making cold winter payments because temperatures had been low enough for vulnerable people to qualify... ...Minister Helen Goodman said: "The payments are automatic so everyone entitled will get them and should not worry about turning up their heating."

But who is entitled?

Well, there's two different payments. The first is the Winter Fuel Allowance. This is for all UK residents over the age of 60 and is made every winter. It is automatically paid for anyone on a state pension or pension credit, other people who are old enough can apply for it separately regardless of wealth. The payment is between £125 and £400 per person depending on your exact age and how many people are in your household, and has an effective minimum of £250 per household.

The second is the Cold Weather Payment. This is more complicated. More people can get it. There's the pensioners (again, and on top of the Winter Fuel Allowance already recieved). Then there's people on Income Support, Jobseekers' Allowance or ESA who also have a child under five, or a pension or disability premium added to their basic eligibility.

However instead of being paid every winter, it is only paid when there has been a "period of extreme cold weather", defined as seven consecutive days on which the average daily temperature at your postcode's weather station was zero or below. If this happens, a payment of £25 is added to your benefit for each seven-day period.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment. You do not need extra heating in this circumstance.

If your child over five is sent home from school, and you have to heat the house during the day for their sake - no payment. You do not need extra heating in this circumstance.

If you are disabled in a way that affects your body's ability to keep warm, but instead of being at home and claiming benefit, you are working from home (either permanently, or because you cannot get into your workplace in the snow) - no payment. You do not need extra heating in this circumstance.

Today Helen Goodman, the Minister for Work and Pensions, was supposed to answer questions in a No 10 webchat. This was keenly followed over on Ouch! and Twitter and unsurprisingly we were all left disappointed. Polite, well-typed and specific policy questions like "What is the specific reason for Winter Fuel Payments not being available to the most vulnerable disabled people as well as pensioners, please?" were ignored in favour of the type of questions that are already very easily answered with a quick search of DirectGov, the type of questions that allowed the Minister to promote the Warm Front Scheme, or questions about individual circumstances such as this gem:

melita:
hi this Cold Weather Payment is it for everyone as on the directgov web page its as if u have kids under 5 in witch i have 2 kids under 5 so would that mean i get the Cold Weather Payment x

Helen replies:
Melita,
If you are on Income Support and you have a child under 5 years old, you will get a Cold Weather Payment. The same applies if you are on income based Jobseekers Allowance, with a child under 5.

Quite how people like "melita" have the capacity to find out about, submit questions to, and watch a government webcast, yet were unable to contact their local Jobcentres to check their specific eligibility, is beyond me.

Disabled people were told that they already get Disability Living Allowance (DLA) to pay for increased heating costs. It's quite astounding the amount of shortfall that DLA is meant to cover. As Lisy put it:

We're only granted DLA for "care" and "mobility". There's no "heating component" of DLA or an "any other costs" component of DLA. Please explain how we're supposed to pay for heating if all our Mobility component is taken by Motability and all our care component is taken by Social Services?

Another question there that, unsurprisingly, the Minister chose to not answer.

A little treat

So, there's this service I sometimes use called e-resistible. They enable online ordering for takeaways who would not otherwise offer an online ordering service. The menus are all collected on their website. You just type in your postcode and you get a list of outlets that will deliver to you, plus their opening times and current estimated delivery time. My postcode currently offers two Chinese, three Indian, one Thai, one Pizza, and one general burger/kebab/etc vendor.

You choose a takeaway, their menu is presented to you, you assemble your order and submit it along with your address and preferred delivery time. You can choose to pay by cash or by credit card (useful when you can't always get to an ATM). I also like using it when trying to order a takeaway for several people. Having a neat and tidy list on the left of the screen of what is on the order, with itemised prices and a running total as things get added and taken away, makes life SO much easier than the back-of-an-envelope version which is more akin to herding cats.

I mentioned e-resistible on another website I frequent, during a discussion about what to do if the people who help you with things like cooking are incapacitated by 'flu or similar. They noticed the clickthroughs and they gave me a little Christmas present - a multi-use discount code, to share with my friends, that will take 10% off the total cost of an order.

The code is: MARY123 and you type it into the 'discount code' box on the payment screen.

Unfortunately it will only work with orders paid for by card, but it's valid for use as many times as we like until 31st January 2010. I tried it out and it works. Happy eating!

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.

Monkey World!

Christmas went off without a hitch, very relaxed, lovely presents, saw a couple of people, had plenty to eat, marvellous. Then it was Boxing Day, the snow had thawed and the sun was shining and I really didn't want to waste the day by sitting indoors staring at the computer. We ummed and ahhed over a few ideas, but we didn't especially want to brave the sales, and we couldn't be sure of which of our favoured haunts for cups of tea and cake would be open on Boxing Day. So in a rare burst of spontaneity, we decided to go further afield.

We came up with Monkey World in Dorset. The idea was that we could spend the remainder of Boxing Day packing in leisurely fashion and doing the three-hour drive down to the south coast, get to a hotel in time for dinner and a good night's sleep, and then in the morning we could get up nice and refreshed, see the monkeys for a few hours, and drive back home again. Unfortunately, while the park is open every day except Christmas Day, the admin office for bookings and information is only open Monday to Friday, so I couldn't phone in advance for the finer details of the access features.

Now here's the thing. Disabled access... well, it can be a bit hit-and-miss. An attraction boasting a blue wheelchair symbol could mean that there's an entire step-free multi-sensory experience within, enjoyable for anyone regardless of impairment. Then again, that blue wheelchair symbol might just mean that a standard-size manual wheelchair can get through the entrance gate and that somewhere on site is a single disabled loo which might be usable once the boxes of cleaning supplies have been moved elsewhere. It is in the interests of any attraction to claim to be easy to find, accessible, value for money and so on. The question is always to what extent the promotional materials match the reality.

Which is why, as Steve booked us in to our hotel for the night, I was picking up as many leaflets as I could see about other winter attractions in the Dorset area. Just in case.

Happily, I needn't have bothered. The claim on the website that they have "a selection of 25 motorised scooters" was not marketing-speak for "given enough notice, we can hire up to 25 scooters from other companies" - they really have got their own fleet of mobility scooters, charged up and ready to go, in a covered pen right next to the entrance gates. It's still safer to pre-book, especially at the busier times of year, but seriously - 25 scooters! It beats hands-down the one or two ex-NHS wheelchairs that are generally available elsewhere.

Unless you are very fit, I would definitely suggest using a powered mobility aid rather than a manual wheelchair because some of the slopes are quite steep. However, they are mostly surfaced with smooth tarmac, they aren't dangerously steep, and they certainly beat steps.

The whole park is accessible to the scooters with the exception of a "woodland walk" which, as you might guess, is a walk through some woodland. There aren't any monkeys in that section though, so I didn't feel I was missing much. Even the playground has an accessible swing*, and of the two accessible toilets, only one had a baby-changing table fixed to the wall, but... it was at wheelchair height! You may now retrieve your jaws from the floor.

Even more impressively (yes! there's more!) is the acknowledgement that accessibility does not begin and end with wheelchairs. If you aren't a wheelchair user but can only manage a certain amount of walking, there's a liberal scattering of memorial benches throughout the park. If you have impaired hearing, you can request printouts of the keeper talks. If you have impaired vision, you can request information in Braille, and there are also several tactile sculptures to enable you to get an idea of the features and scale of some of the park's residents. They've really thought about things, and you get the impression that they'd be open to other suggestions.

However this has turned into a post about access rather than about monkeys, and it was the monkeys we went to see.

Monkey World is primarily a rescue centre rather than a zoo, and the focus is very much on the rescue and rehabilitation of primates, followed by the education of humans. For instance, there are scores of capuchins and no gorillas. This is because there were a lot of capuchins needing rescue, whereas there aren't so many at-risk gorillas and there are better facilities available for the few that do crop up. There's no one there going "Bob, we've got to get a couple of gorillas, it'd be a real crowd-puller."

Do not go if you want to be "entertained", do not expect parades and cartoon characters, and I think if you were so crass as to ask to pet a monkey or have your photo taken with it, you would probably be ejected from the premises. Most of the residents have been rescued from a life where their "job" was to be a photo prop cuddling tourists.

Don't get me wrong, it is very entertaining to watch the monkeys playing, and to hear or read about their adventures and interactions. They even have their own TV show (in fact Steve and I may have been the only visitors not familiar with the monkeys from TV. I've since discovered that the programme is on Tuesday evenings when I go to knitting). But it's also really nice the way everything is done to fit around them being monkeys, rather than them being exhibits. None of it is Disney-ified or over-anthropomorphised. If anything it's the reverse - even the playground areas are set up to mimic the equipment in the enclosures, which I thought was a nice touch.

My favourite group was probably the chimps. I loved watching them flying about the place in much the same way as I enjoy watching Parkour. Despite the enclosed space, there is a tremendous sense of freedom and of synchronicity with one's environment. I felt the most empathy with the orang-utans, and my Adorability Award goes to the woolly monkeys.

We had an absolutely wonderful time wandering round, despite the cold weather. I'm shattered now, but that was only to be expected and I think it was worth it.

All the photos were taken by Evilstevie and can be found here.

* No, I didn't.

Prepared

I knew there was a reason I'd put so much time and effort into getting ready for Christmas well ahead of time... we went to a big family meal with a handful of children small portable germ warfare agents present, and now Steve and I are both suffering from Winter Lurgy. Yesterday in particular was hideous, with a mother of a migraine that actually made me throw up (usually they only make me feel nauseous).

Thankfully, having everything sorted out already, along with me not being "at work", has meant that I've been able to properly rest up every day so I'm nothing like as floored as I would be if I was still thrashing myself to pack CDs. Since I'm not that wiped out, I'm able to tackle a bit more of the household stuff than I otherwise would, which in turn gives Steve half a chance to recover when he staggers in from work.

It does mean I've had to put the business development stuff on hold. Again. Yup, the hopes and dreams I had for that referral to the Council for Disabled People being the business development support I needed were unfounded. It turns out that this particular project is set up to help "voluntary and community organisations supporting disabled people" rather than helping disabled people set up businesses that intend to serve anyone, disabled or otherwise. It was a completely inappropriate referral and all we can guess is that the person who referred me was just panicking and opting for the first project with "disability" in the title.

So I'm pretty much figuring it out on my own now, with some helpful printouts from Business Link and any number of PDFs on the HMRC website. Most of the basics are in place - including, today, the good news that my PO Box will be up and running at the beginning of the year - but I have kind of lost momentum. I think I may be best off calling it a proper Christmas/New Year holiday and picking it up again after my birthday.

Also in the New Year, I'll be interviewing for a new PA, as the lady who has been working with me this year has gone on Maternity Leave. I'm quite hopeful, and a lot more confident now that this is the second time going through the recruitment process.

Despite the various setbacks, I'm still feeling really positive about things, and as usual I'm very much looking forward to Christmas. So let's round off with my really awful snapshot of my really lovely Tree.

(edit to add title!)

I am that good

Feeling rather pleased with myself at the moment.

I've more or less stopped flustering and panicking about self-employment (remember that five weeks ago the concept hadn't crossed my mind) and I'm making good, steady progress towards being set up and ready to go. I've completed about half of the online business course, and about two-thirds of my business plan. I've taken care of a number of practical issues (things like the VOA assessment for whether I'd have to pay business rates) and I have some sensible questions to ask the advisor I'm meeting with this week. I've picked a name, set up an email address, installed a suite of office software, done some market research, got some quotes for logo-type artwork... the list goes on*.

On top of this, I'm also ready for Christmas. Steve's having a bit of a trying time at work right now and tends to come home with his brain dribbling out of his ears, so I took charge. Step one, I made a list of people we should buy presents for and a list of people we should send cards to. Once he'd approved these, step two, I wrote out all the cards for him to add his signature. Step three, we determined who we were likely to see during December and dug up addresses for the others, and I sorted out the envelopes all nice and ready for the postbox. Step four was a list of suggested gifts from online retailers for almost everyone on the present list, approved and purchased.

Step five was an actual shopping-centre trip to dig up gifts for those we hadn't found anything for online. Step six, I've been wrapping and labelling the gifts as they have come into the house. We are now at a point where the completed boxes of wrapped presents have been dispatched to the people we're not going to be seeing this year, and there are a couple of plastic boxes of wrapped presents and a stack of cards ready for the people we are planning to see.

We are, in fact, all set for Christmas, which is pretty good considering that we're still in the first week of December. Steve isn't sure whether to be amazed or disturbed, but is presenting it as concrete proof of my abilities to anyone who asks him what it is I'm planning to do and whether I'm any good at it.

*by the way, one of the items remaining on the To Do list is finding someone to hold my hand through the website process. Any takers?

Keeping warm

So, I'm at home all day now, more or less every day. The thing I currently miss most about work is that it was warm. The weather has turned quite chilly - as one might reasonably expect, what with it being nearly December - and so it's a good time for those of us who maybe can't quite move around enough to keep ourselves warm to remind ourselves of the current advice in the form of the Keep Warm Keep Well campaign.

Okay, so as usual there's ample opportunity to snigger at the naivety of those who wrote it, for example the way they think that despite the level of poverty with which many elderly and disabled people live, we'll all have central heating with a thermostat that works. It's also very easy to get angry about the failings of the Warm Front grants.

Nevertheless there's a lot of good tips and advice in there but some of it does seem a bit... mutually exclusive. For instance:

"Fit draught-proofing to seal any gaps around windows and doors."
"Remember to close curtains and shut doors to keep heat in the rooms you use most."
does seem to clash a bit with:
"If you use a fire or heater in your bedroom at night, always keep a window and door open."
"Keep your home well ventilated."

Am I meant to be sealing myself in, or trying to get a breeze coming through? I'm just not sure any more.

On balance I've opted for sealing myself in - it's warmer that way, and there are worse ways to go than carbon monoxide poisoning*, where from what I understand you feel drunk and then you fall asleep, which is a reasonable summary of my day to day life anyway.

It's a good tip about keeping the blinds or curtains closed, and it makes a noticeable difference. However when you're stuck alone in the house all day, even if you don't have depression or SAD, it's all too easy for your mood to plummet, so I'm making a point of spending at least a couple of hours sitting by the window with the blinds open trying to enjoy what natural light there is.

It's also a good tip about having plenty of hot drinks, although again, not without drawbacks. I know I'm not the only disabled person who, when having a painful day, doesn't drink as much as she should, in order to minimise the number of excruciating climbs up and down Mount Staircase just to pay a visit.

So I've formulated my own advice. Ready?

If you can, spend as much time as possible out of the house and in a place where someone else pays the heating bill.

This slightly contradicts the official advice about not going out unless absolutely necessary, depending on whether you read it as "don't leave the house" or merely "don't spend time hanging around outdoors". And of course for many of us it's impossible - or at the very least, the cost of taxis would outweigh the cost of properly heating our homes. But if it's in any way an option, my inexpert advice would be to do it. Spend an afternoon in the library, sitting by a window on the sunnier side of the building. Go to a shopping mall and sit under the skylight watching the world go by. If possible, find some volunteer work, then there's free tea and coffee too. Join in with a free course at the Community Centre even if it's a topic that doesn't raise your interest. See people, get sunlight, get your money's worth from your council tax, because there are few more frustrating ways of spending a day than cooped up indoors with the curtains closed, shivering.

* I am a very fortunate disabled person who lives in a centrally heated house with reasonably-sized rooms. I am not sealing myself into a tiny bedsit flat with a gas fire, so please do not worry - or at least, not about me...

Pass the parcel

So, in my path to become self employed, we were as far as: I need help from Access to Work in order to work, I need a business plan in order to get help from them as a self-employed person. I contacted Business Link (who, as you can see, are a .gov.uk and therefore official) and they referred me to a local business development agency.

The local business development agency said yes, we run free informal courses for people starting up their own businesses, during school hours, locally. Great! Except "locally" is apparently Coventry. To a Normie living where I live, that's £5 for the return train ticket and maybe £2 for buses at either end. For me, it's over £20 each way in taxi fares (big thank you to Warwick District Council for removing the accessible transport scheme).

I'd pay that money quite happily for a one-to-one session with someone who would check that I had ticked all legal boxes for my specific situation - or more importantly, tell me which ones I missed and what to do about it - and confirm with authority that I was ready to start trading. But I don't exactly have it knocking about as spare cash to hazard on fuzzy informal courses that may or may not have any relevance to my business.

Oh, they said.

So they in turn have passed me on to something which might be called the Regional Disability Infrastructure Support Service, or might be the Council for Disabled People, or might even be something else entirely. I'm not sure what this multi-monikered organisation's remit is - whether it's helping with the transport issues or helping with the "setting up a business" issues - but it doesn't matter for now as they can't see me until mid-December.

Meanwhile, I am apparently welcome to use the resources and forum at the website of the Coventry-based business development organisation. The resources are... well, they're very good, nicely laid out, but I am worlds away from their target audience. Here's a small quote from the section on Personal Development and identifying transferable skills that may be of use in your business:

Do you organise yourself, your children and your partner?
Organise the playschool’s fundraising activities?
Act as secretary to the tennis club?
Organise lots of social functions for you and your friends and family?
Cook and shop?
Organise who does what in the local community fair?

In other words, am I a vision of middle-class feminine perfection? Well, no. I have many skills that I use, as an employer of a PA, as an employee of my bosses, as a "customer" of the DWP and Social Services, as a blogger, as an active participant in the disability community, as a friend, as a supportive partner, and as a housekeeper. But I am, in short, not their kind of person, and knowing that makes me wonder how much they will actually help me.

For now, I continue ploughing through pages after page of information that for the most part doesn't apply to me, gleaning out the little germs of usefulness.

Paid time off

I've worked my last afternoon at work, accepted my leaving card and gift voucher, spent a couple of hours sitting in a pub listening to my erstwhile colleagues talk about things that are now a big old heap of Not My Problem, and now I am on paid holiday time for just over two weeks while I wait for my contract end date and my P45.

Today, at about the time I would otherwise have been getting ready for work, I turned the heating on. When I would have been getting into my taxi, I went upstairs and put some nice essential oils onto an aromatherapy diffuser. Then I ran a bath (big thank you to Steve who scrubbed the tub just for this), added half a bottle of bubbles, put on a CD of meditation music, and settled down for an hour's soak that, technically, I was being paid for. Bliss.

Of course there's only so much time you can spend gazing at the bathroom ceiling, so as per the advice given on previous posts, I also contacted Business Link to find out what they could offer someone in my position. I think this was a good move. I now have a name for the type of work I'll be doing - Virtual Assistant - which is much easier than "doing admin and officey stuff from home for people who need things doing but don't have the resources for a full-time on-site admin assistant". I'm being sent an information pack about that sort of work; in the meantime my details have been passed to a much more local Business Development Agency who are affiliated with Business Link and should be able to provide more specific support. Above all, they will help me write up a Business Plan, and with a Business Plan, I can get support from Access to Work as a self-employed person, and that opens up all sorts of possibilities.

I'm scared as hell, but apart from that I'm feeling really very positive about the whole thing.

Meanwhile I just keep listing in my head all the things that I don't have to worry about any more. I'll hopefully stop having nightmares where stacks of CDs fall on top of me. I can grow my fingernails, and paint them, without them getting broken and chipped on tape dispensers and dodgy shelving. I'll hopefully be in a lot less pain. I'll be in charge of whether or not I have music on, and if so, what sort of music, and at what volume. It's going to be great.

There is no pause button on my life.

I feel that this is an appalling oversight on the part of the manufacturers. Still, what do we do?



So, I've resigned from my job and the final details have been ironed out. I officially finish at the end of this month, but I have quite a chunk of annual leave left to use up so my last actual working day is Tuesday 10th November.

My handy printout from the nice lady who does the payroll confirms that I only had one and a half days off sick in the last 12 months, which is way below average, even pro rata, and should be a jobsearch asset. I turned myself inside out to keep it that way and I'm so glad I didn't have to screw it up at the end by getting signed off.

It still stings quite a bit that leaving the job wasn't entirely my choice - I could have stayed another few months but would have been trying to work (a) without any additional support or equipment to deal with the increased demands, and (b) in the explicit knowledge that I was not wanted there. But I am still convinced that my decision to not attempt to drag it through the courts is the right one. I would rather use my energy on dealing with the necessities of life (considers another YouTube clip, decides against it) and have a bit left over for, you know, enjoying myself.

I have managed to complete my draft answers for my DLA form, which this time round is just over 19,000 words. It saved a lot of typing that I already had my answers from last time in electronic form, but it wasn't just a straight copy/paste job because they've shuffled the order of the questions, and merged some questions and split others up differently. Although my needs haven't changed, I also had to change some answers to account for factors like the PA and the social worker that I didn't have last time - for instance, whereas last time I wrote "I would like to go swimming, the help I would need for this is XYZ," this time it was more "When I go swimming my PA helps me with XYZ." The help I need is the same but the context has altered and the form must accurately reflect the current situation.

I've got all of my Social Services paperwork up to date as well, which is a relief after the collision of two separate threads of PA issues and the Monitoring Return. Better yet, the Monitoring Return was approved without query and I don't have to do another one until January.

My Access to Work advisor got back to me, and says that although I'll have to re-apply for support with my job as I switch from PAYE to self-employed, since I'm on the books and my needs haven't changed it should go through quite smoothly. I've prepared my "final" forms for my transport support, ready to be stamped and signed by my soon-to-be-ex-manager on Tuesday.

So, all that stuff dealt with, I think after Wednesday I can properly apply myself to researching things like Business Link and getting everything in place to embark on the self-employed adventure in December.

One question. I hear that when I set up as self-employed, I have to give my 'business' a name. Apparently many people use their own names, but I don't really like my full name and I'm not sure I want it to be google-searchable either. I'll probably end up with a generic [name of business advisory service][client number] combo, but if anyone has any ideas I'd be interested to hear them.