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.