Tuesday, June 29, 2010

Stratford Chain Ferry

Just a very quick post about a little adventure Steve and I had at the weekend.

We went to Stratford-upon-Avon on Sunday afternoon, and a lovely place it is, especially in the summertime. We may also have been aided by the fact that there was some sort of sporting event happening that afternoon, so we were very nearly the only English people wandering about.

Thanks to the Chair Of Awesome, I no longer have to make the choice between staying within a few metres of the car, experiencing incredible pain, or assigning someone else the job of pushing me. So for the first time, we were really able to wander about which was great.

We enjoyed a bit of a stroll along the bank of the Avon, and then we spotted the ferry.

Built in 1937, the chain ferry is safely pre-DDA and I'd pretty much dismissed it out of hand when I heard about it as "things that just aren't designed for wheelchairs" - I don't tend to expect anything pre-war to have great access. Nevertheless we decided to mosey over for a look because, if nothing else, it's an engineering curiosity and worth a look.

I was quite impressed, then, to see that there were decent not-too-steep side-on ramps down to the jetties on both sides, and that the operator's answer to "can we bring the wheelchair aboard?" was "of course!"

The fare was a princely 50p per person.

The ferry itself does have three steps down into it at each end, but there are sturdy rails all over it that come right up to chest height so there's plenty to grab. Best of all, the operators had almost definitely had some training in disability issues, as their attitude could not have been better (or maybe they're just exceptionally nice young men). One of them physically held the ferry as stable as possible against the bank, and they also did the marvellous thing of asking and offering help for getting me down into the boat rather than grabbing and interfering. The same at the other end. I was really pleased about getting to do something I didn't think I'd be able to do, and thanked the guys for their help - to which one of them replied "it'll be better soon hopefully - we're trying to get a ramp to go into the ferry itself."

Ooh, I felt like applauding, and was a very happy bunny as we trundled away from the jetty towards the Brass Rubbing Centre and the Courtyard Theatre.

I don't know (and haven't been able to easily find out) whether the chain ferry is privately owned and run, or if it's the council, or some kind of conservation charity, or a combination of all the above.

But I was really impressed to see an historic curio making the effort for access in terms of both the physical environment and the staff attitudes, rather than hiding behind its age as a reason for not making any effort at all.

Sunday, June 27, 2010

Dear Internet, Please Help

Time for a wedding post.

The plans are all coming along very well, and bar a certain amount of cash to be handed over, we have everything we need booked and in place for the wedding.

This gives me a cool 11 months to fret and fuss about the trimmings - call it eight to account for my tendency to want everything done in advance.

One thing I had been pondering was gloves. It's much, much easier to propel the wheelchair wearing gloves with a leather palm, as it means the grip is part friction, rather than having to be entirely based on the muscle-power of my hands repeatedly clutching and releasing the push-rims. Seriously, after the first day's use, my hands were every bit as sore as my shoulders. I currently use these cheap cycling gloves from Halfords and very good they are too.

What they are not, however, is 'attractive' or 'weddingy'. You will also notice that despite being 'fingerless', they do cover up that bit at the base of the finger where a ring sits. On my wedding day, I do want to be displaying my wedding ring. But I also would like to not hurt my hands.

A lovely woman on a wedding board I frequent showed me a couple of glove designs that I'd never even thought of: Design 1, Design 2. I was thrilled.

But, picky me, I don't want black (it seems less 'wedding' and more 'special interest') and although of the two I prefer the second design, the palm really needs to be grippy, frictiony leather rather than spandex. I'm googling my way through but it's a bit time-consuming trying to filter out all the cricket gloves, boxing gloves, defunct websites, websites that appear in a UK search but only service the USA...

Does anyone have any ideas, contacts in the UK custom leatherworking industry, or other potential solutions?

Thursday, June 24, 2010

Budget 2010: DLA

Earlier this week, the new coalition government laid out their emergency budget. Many key points, like VAT rising to 20% and child benefit being frozen, are interesting, but I'm not qualified to comment.

What I am qualified to comment on is DLA, or Disability Living Allowance.

Before we go any further, the standard recap. There are two major types of "disability benefit". One is Incapacity Benefit/ESA, which is given to people who are unable to earn a living due to impairment or disability, to cover their basic living costs like food and bills. The other is Disability Living Allowance. This is money given to disabled people, regardless of whether they work or not, in recognition of the fact that disabled life involves higher expenses - having to run a car/get taxis rather than walking/cycling/using public transport, having to buy more expensive prepared meals rather than cooking from scratch, having to purchase and replace mobility aids, etc. Not all ESA claimants get DLA. Not all DLA claimants get ESA. They are different and separate benefits.

The coalition has stated that:
The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.


Let's start with these "objective medical assessments", because it seems to have given a lot of lay people the idea that DLA is currently given without medical evidence.

That's simply not true. Firstly, on the form you have to submit details of your GP, and any specialists or other healthcare professionals you see (from consultants to physiotherapists). You are also encouraged to submit any relevant medical reports, and copies of current prescriptions for medication or equipment. Secondly, they write to your GP, who is asked to fill out their own form commenting on your needs and also confirming the medical tests and assessments they have sent you for and the results. Thirdly, if the decision maker feels there is not enough medical evidence, they can demand a medical assessment by a private doctor or other healthcare professional working for a private company, Atos, who are paid a large amount of public money to conduct all government medicals (because asking NHS doctors to do it would just be too economical).

(Interesting aside: did we all see this story about Vikki Bell, a woman who worked for the DWP, was declared unfit for work by Atos in their capacity of assessing government employees, attempted to claim ESA, and was declared entirely fit to work by Atos in their capacity of assessing benefit claimants?)

So let's not pretend there's no medical assessments at present.

Moving on to "ensuring payments are only made for as long as a claimant needs them" - in their Poverty, worklessness and welfare dependency report the coalition made it clear that they regard it as a big problem that 1.1 million people of working age are "persistently" claiming DLA for five years or more.

Well, yes. You cannot claim DLA unless:

1) You have a terminal illness and are expected to die in the next six months.

2) You have had substantial care and/or mobility needs for at least three months and are expected to have them for at least another six months.

It's not a short-term benefit for easily-curable illnesses. It's mostly awarded for permanent issues, and many (perhaps even most, although I don't have the figures to hand) claimants are unlikely to regain their sight, or find that their legs have grown back, or otherwise experience a miracle cure within five years.

And it's also - apparently we cannot repeat this enough - NOT a worklessness benefit.

I am capable of some work. I work. I have worked continuously for almost three years. I earn money. I pay tax. I pay NI. I claim DLA. None of this is contradictory.

I would not, could not, stop claiming just because I work. Once I am using up time and energy on work, I have less time, energy, and flexibility for trying to manage my care needs. Once I am working, it is even more important that I have the ready cash to get taxis when I need them because I can't arrange working life around when a friend can give me a lift. It is more important that I have the extra funds to afford ready-meals or takeaways because I cannot spread a cooking effort out over the entire day. It is more important that I have money to enable me to repair and replace my mobility aids ASAP, using expensive courier services, because I can't afford to be housebound and not working while waiting for a Slow Super Saver postal rate.

Damn right we claim "persistently" - I think it is a forlorn hope on the part of the government that reassessment will cause our needs to vanish or that getting us off DLA will get us into work.

But then, for all the rhetoric, getting us into work isn't the point of the exercise. The point is to reduce the cost. If the only way to do that is by shifting the goalposts (while skimming a nice chunk off the top for their friends at Atos, the private company who conduct all government medical assessments, by creating a need for even more assessments) then that is what they will do.

I suspect the "object" of the new "objective medical assessments" will simply be to declare more people ineligible, regardless of their real needs or the impact the withdrawal of DLA will have on their lives, thus reducing the benefits budget. Regrettably, the eligibility might be reduced but the needs will remain, and someone will have to pick up the pieces - probably the already stretched and rationed health and social care services, as explained by Bendygirl.

Thursday, June 10, 2010

New Chair!

No, I don't have any pictures of it. I've been too busy whirling around in it to take any.

First, on Tuesday afternoon we went to Solihull, a town with a shopping centre that does unusually well on the access front, as well as a significant amount of it being indoors. It was an excellent 'training area'. Solihull also has a Hotel Chocolat. Ahem. Training opportunity. Accessible environment. Learning to use chair. Yes.

Then on Wednesday morning I got to use the chair for one of its specific stated purposes. I went to post a letter. The postbox is about 500m away so this was a trip of approximately 1km.



At this point the freedom went to my head and I decided that, dammit, for no particular reason I was going Up The Hill. Power to maximum. Anti-roll facility on. Leaning forward so that my shoulders were practically touching my knees, to avoid tipping the chair back.

(Honourable mention to the young woman coming out of her house halfway up the hill, who not only asked me if I wanted any help - gaining Good Samaritan points - but also accepted my answer of "no, it's okay thanks, I've got batteries," without any fuss, which is perfect.)

I got there:

The focus on my phone's camera isn't really set up for rolling vistas and the weather wasn't great, but you can see the significant gradient of the hill and a hint of the lovely fields beyond.

Admittedly I was a bit out of breath by that point. The salesman who took me for the test drive had used a chair that really was very different, and I should not have taken his word for it that it was comparable. On the other hand, my Access to Work grant specified that I was allowed this exact chair and no other, so it's not like it would have made a difference to the sale.

But of course I had a chair with me, so it was perfectly okay to just sit at the top of the hill and relax for a few minutes. And then... then, I got to go down the hill. The wheels are very clever indeed, the tiniest pressures were enough to make sure my descent was calm, controlled, and effortless. Then it was the 500m route home.

('Special' mention to the woman in the huge tank of a car who pulled up alongside me on my road, and then sat there impatiently waving me past. I was confused, because I wasn't in front of a driveway or anything, so I just smiled and carried on. Then as soon as I was past, she parked her behemoth up on the pavement - the entire pavement - neatly blocking the path for any other wheelchair user or person with a pushchair, and probably quite a few regular pedestrians. Inconsiderate cow.)

I'm feeling it in my hands (from gripping the push-rims) and my shoulders (from constantly moving back and forth), and I also have that very particular ME/overdid things feeling of a sore throat, random tingly sensations, and lurching vertigo. But it's not as bad as I was expecting and as long as I'm very careful today I should be alright.

Monday, June 07, 2010

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.

Thursday, May 13, 2010

Such Tweet Sorrow - applause

Previous posts:
Such Tweet Sorrow posted on April 12th, 2010.
Indescribable posted on April 18th, 2010.

For never was a tale of more woe,
Than this of Juliet, and her Romeo.


That may be true. But this afternoon, when I told Steve that the five-week Twitter production of Such Tweet Sorrow was finally over, and he jokingly asked "was there a happy ending?" the answer, strangely, was Yes.

I mean, okay, four out of six characters died. But the difference in the medium changed the place where the play ended and therefore the feel of the ending.

If you see Romeo and Juliet on stage or film, you barely have time to wipe your eyes at the end of the suicide scene before you are presented with the Prince's summing-up and a curtain call.

In real-time, however... Juliet drank the sleeping draught on Tuesday night. Romeo found her early on Wednesday morning. For about an hour he agonised over what to do... then his not-so-quick drugs took another hour to work, and all we knew was silence until Juliet awoke. She took half an hour to assess the situation, sent out a heartfelt goodbye to her sister (Jess, the "nurse"), and then it was silence again until Jess found the bodies. Those long silences really took an emotional toll on the involved audience (affectionately known as #teamchorus).

Too upset to be delivering a neat and tidy epilogue, Jess spent the afternoon and evening railing at her father and portraying despair in messages that were chillingly close to those sent by the young lovers before their deaths... followed by... silence. Jess being an altered character, no one knew whether she would be likely to do something drastic. I went to bed on Wednesday night half expecting to hear news that she, too, had killed herself - the relief on Thursday morning when she tweeted complaining of a hangover was immense. Especially since Jess was one of the more likeable characters.

Over the course of the morning, Jess (and the audience!) got to grips with the facts of the deaths with the benefit of a night's sleep. The summing-up was then delivered as dialogue between Jess and the Friar and although there was a sense of loss, there was also a sense of survival and new beginnings. It felt like a positive ending.

Apparently there is a curtain call tomorrow, which I am very much looking forward to. If nothing else, I need to tell Charlotte Wakefield that it's just Juliet I couldn't stand, and that since Juliet is now dead, I no longer bear her any ill will. I might have *ahem* been a little bit aggressive about my dislike of Juliet and I really hope the actress doesn't take it personally.

Was this an accessible performance? For me, yes. Certainly it saved me from having to deal with practical access issues in and around Stratford in order to experience an RSC production (although I still want to do that one day). And the beauty of Twitter is that if you need to sleep or medicate or stretch or rest or throw up, all of the play is right there waiting for you to catch up on when you come back. However, there were a lot of tweets, and I know several people had to drop out on that basis - in many ways it is easier to devote two hours of undivided attention to the play in isolation, than to immerse yourself into a production that has more in common with a role-playing game than a theatre visit.

I will definitely want to be involved in another Twitter-Shakespeare project. A large part of that is because it is a case of "being involved" rather than merely "watching". Accessible interactive theatre in your own home, where you respond to the characters and the characters respond to you - it beats TV.

All that remains is to stand and applaud:

The Cast
@romeo_mo - Romeo Montague - James Barrett
@julietcap16 - Juliet Capulet - Charlotte Wakefield
@LaurenceFriar - Laurence Friar - Geoffrey Newland
@mercuteio - Mercutio - Ben Ashton
@tybalt_cap - Tybalt Capulet - Mark Holgate
@Jess_nurse - Jess "Nurse" Capulet - Lu Corfield

Producer
Charles Hunter

Director
Roxana Silbert

Writers
Bethan Marlow
Tim Wright

All at Such_Tweet, The RSC, Mudlark, 4ip, and Screen WM.

My fellow #suchtweet Groundlings including #teamchorus and #mercutiogroupies

and the mysterious @jago_klepto...

Thursday, May 06, 2010

Stop

Sitting in Steve's study this morning, sharing the first cuppa of the day, catching up on the overnight Twitter feed but discussing nothing more weighty than whether we had a good night's sleep.

A thought occurs to me, I raise my head and start with "Steve?" but before he can respond, a scythe of pain slices through me, somewhere behind my eyeballs. I can't see, the world spins, I want to lie down but I can't work out which direction that might be.

Stop.

There's ways and ways of saying Stop. Steve knows me well enough by now to understand what this one means. He doesn't ask questions, he doesn't move, he doesn't fuss, he just stops and waits. If we are lucky, I'm going to catch myself and slowly work back up to speed. If we're not lucky, he'd better be ready to catch me and make sure I don't knock the cups over.

Time passes, but we are a tableau, a freeze-frame, suspended animation. With an effort I breathe in, and then back out. A brightly-coloured wriggling skewer of pain dances in the cavern of my skull which suddenly seems to be much larger than any part of my body has a right to be. I breathe again and my outstretched hands identify the edge of the guest bed, which my upper body gratefully sinks onto. The duvet fills my eye sockets with calm, refreshing darkness, and the vicious little spears of pain begin to dissipate into a cloud which is bigger, but more muted and easier to cope with.

Slowly, the passage of time reasserts itself. Gently, Steve begins to move and both of us make a conscious effort to relax again.

Soon we start to giggle about the unfairness of him being effectively told to shut up before he's had a chance to say anything. The tea has not quite gone cold. I will have to be cautious today, avoid pushing my limits, but as long as I'm careful, I should have the spoons to manage everything essential.

Life goes on.

One of the 'essentials' today was to go and vote, with the help of my PA. I'm pleased to report that it was an accessible experience - we were able to park at the polling station, wheel in without difficulty, there was a wheelchair-height polling booth available, and I was politely advised that if I had difficulty reaching to post my paper into the ballot box, I could ask one of the officials to do it for me. I didn't - but the offer was appreciated.

Saturday, May 01, 2010

BADD 2010 Roundup

As usual, here are my five favourite posts from BADD 2010 so far. Bear in mind that once again the total contributions are well into three figures and I have not managed to read all of them. I may have missed the best post ever.

First up, we have Angelikitten's post about Voluntary Accommodations, exploring the positive difference accommodating attitudes in the workplace can make - and thus highlighting what a barrier negative attitudes become to disabled people who are willing and able to work if they could only rely on such adjustments being made.

Heather at OhWheely posted about those people who don't seem to realise how much more difficult they are making our lives by refusing to do their jobs properly. She also raises the impossibility of fighting every battle and the balancing act of trying to say "this is unacceptable" without sounding like a whinger.

Stephen at Single Lens Reflections brought some much needed comedy relief - and a valid point about two-way assumptions - with his wonderful post Flying the Red Flag of Understanding.

More Than A Mascot is a post from Bethany about the importance of proper, meaningful inclusion rather than sidelining and patronisation of disabled kids in mainstream schools.

And finally, Assiya at For A Fairer Today wrote Submissiveness, a post about having to be cautious because help and acceptance can be very conditional. This one really twanged for me - I am constantly conscious of not wanting to challenge or 'bother' doctors, social workers, etc, for fear that they will withdraw what assistance they do give.

Till next year...

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.

Thursday, April 22, 2010

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

Blogging Against Disablism Day, May 1st 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!

Sunday, April 18, 2010

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?

Monday, April 12, 2010

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.

Sunday, April 11, 2010

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.

Friday, March 19, 2010

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.

Tuesday, March 09, 2010

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.

Monday, March 01, 2010

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.

Monday, February 15, 2010

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.

me and Steve, standing cuddled up together in front of beautiful scenery
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.

same scenery, but Steve kneeling
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 still kneeling, holding up a ring box. Me looking shocked.
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...

Steve still on one knee, me squatting leaning against him trying the ring on.
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.

my hand with the ring on it. The ring is white gold with a solitaire diamond in a bezel setting.
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.

The ring on its own, on a black fabric background with a blue light shining through the diamond.
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.

Monday, February 08, 2010

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.

Saturday, February 06, 2010

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.

Thursday, February 04, 2010

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.