Friday, September 26, 2008

Adventures in Lifts

ARGH. I am trying to read about the ICIDH (for a seminar this afternoon on Disability and Language). The ICIDH was the forerunner to the ICF. Both are largely medical-model in outlook, although their original designers didn't think so. There are a few redeeming features to both which are interesting to consider - for about two minutes. Then it all gets horribly *dull*. It's a go-nowhere debate, because although I agree that the ICIDH is pants and rubbish in itself, and the ICF not much better, the sociologists behind them write (mainly) nice things about how they intended the focus to be social not medical, and the Disability Studies proponents reply with angry articles about how they didn't achieve this aim, and no one can see anyone else's viewpoint, and never the twain shall meet. And in the meantime, I *know* the social model - I'm revving the engine trying to get into the more interesting stuff (coming up in future seminars) about social theory of disability, and such fascinating ideas as whether that can include those who don't feel included by the social model without alienating those who are completely in love with the aforementioned social model and will never deviate from any of its claims... My problem is also that I can see both sides of the debate on language, being a linguist. I was once a firm believer that 'impairment' and 'disablity' were entirely separate things that had almost no relationship to each other. Listening to the views of real disabled people (*not* non-disabled sociologists who are stuck in their academic ivory towers with the high windows and blackout blinds) has led me to begin to rethink the relationship between the two. But as I say, that's for social theory, not social model, as I won't have anyone touch the social model with so much as a fingernail, or I'll bash them over the head with Haralambos's 'Sociology: Themes and Perspectives'. Which is very heavy. Just so you know. So, yes, my views are complicated. I have a feeling this course is only going to make them more so. Hurrah. I think...

But never mind. Let's talk about just one reason why the social model is still Queen of All, especially where the education of poor unwitting little non-disabled people is concerned. I am having interesting encounters with lifts at the moment. Last Friday evening would have been fantastic (Sci-fi Soc film night: Doctor Horrible and Stardust - fun with supervillains then more fun with gay pirates, hurrah), were it not for the sodding union lift that is seriously getting in the way of my life at the moment. Well, primarily the lift. Also the attitudes of union staff. (Ah yes, because disabling barriers can have many dimensions.)

Between films, I took the lift down from the second floor, where we were enjoying our televisual delights, in an attempt to find myself an accessible loo and a cup of tea. On reaching the ground floor I went into the bar, where they were just closing up, but were kind enough to grab me a takeaway tea while doing so. I tried to head back out the doors I'd just come in through, but found them locked.

I should, at this point in the story, make it clear that there are two different lifts on two different sides of the union building. Each lift goes to different floors, but they both happen to stop on the first floor. By locking this door, the staff had blocked my access (on this floor at least) to the lift I needed to get back to the second floor. I could have asked at the bar for it to be unlocked, but I reckoned that by the time they'd called security etc to arrange this, it would be quicker to go up in the other lift to the first floor and then change to the other lift there for the second floor.

So off I go, arriving on the first floor and heading across the corridor to the other set of lifts. All is going well, until I encounter *another* set of locked doors. Right, I think, I'll head over to reception to get everything unlocked, then go on my merry way. Except that, on returning to the other lift that I had exited from literally moments before, it becomes clear that it has broken down. For the FIFTH time that week (and those were just the times when I was there to count). I am now stuck on the first floor and, regardless, have no way of getting back to my society's meeting room. I make a *massive* fuss about all this (as I'm sure you can imagine). Security staff are called to help. They tell me - like so many union staff have during the Glorious Week of the Broken-Down Lift - that "it's a very old and unpredictable lift". I see - does that mean you're flouting the DDA any less? They then tell me that they always lock up the other set of lifts because they're under pressure to get "as many doors locked as possible". They say that if they had known a society was meeting, they wouldn't have done. I think this is probably rubbish, as the Sci-Fi Society meets there every Friday. I take their e-mail addresses so I can inform them every time I want to use that floor in the evening (although that reminds me - I shouldn't have to, and I need to raise this with the Exec at some point). I then, finally, get taken through to the lift, with a promise that they will not lock me into the building. (Which turned out to be only half-true - the automatic doors had been shut off when I got back to the ground floor, and I had to struggle with the manual ones, but these were at least unlocked.)

As you can imagine, I complained to the Exec about the lift at the end of the Glorious Week. They've said they want to get it replaced, but I have yet to hear if they are going to. I'll keep bother them about it. Repeatedly.

The Social Model: until society sorts out its bloody lifts, it's not a bad start.

And now I have to go and finish reading too many people debating it. Gaaaaaaaah.

Thursday, September 25, 2008

'Are you sure you want to remove --- from your friends list?'

When the most you've heard from them in a year is very occasional 'status updates'...

When you know lots about them, but are no longer sure who they are...

When they live a few suburbs away, but might as well be in Australia for all you see them...

When their busy, active social lives clearly continue, but no longer feature you...

When you're spending far too much time trying to figure out how much of this is in response to your still-quite-recently-acquired disability... it time to reconsider our post-modern, post-reality, post-everything concept of 'friendship'?

And how would a better, more real, more meaningful version of that concept look?


...because this is the bit that makes me stop wondering and try to forget the whole thing...

...would there be anyone left?


Wednesday, September 17, 2008

Warning: Rant Approaching

Why is the Department for Work and Pensions so bloody stupid?

I claim various benefits through the DWP. My most recent claim started several months ago, but I've also been getting DLA for the past eighteen months, so they definitely know of me. I sent them masses of information when I most recently claimed, including details of statutory sick pay that I had received. This sick pay was incorrectly paid, as I was supposed to be getting IB for that period (but this is the DWP's problem, not mine). But they know about this sick pay, and they have even just sent me a form to sign to confirm I received it so that they can sort out the error.

Today I make a claim for a new benefit, due to a changed circumstance. I have to spend thirty minutes on the phone, at my own expense (I will need the new benefit just to cover this month's mobile phone bill). They asked a ridiculous numbers of questions to which they already knew all the answers, or would have done if their systems could cope with this fact. And now they want documents to prove my identity - even though I've already sent them all these before - including the payslip proving I received statutory sick pay. But you already know about this, I say, you sent me the form. We still need it, they say. Why, I ask. We just do, they say. Right. Well done.

The government wants to save money in relation to the benefits system. It's targetting sick people who can't work, as a result. It would save a lot more by looking at how much time, effort and funds are wasted by pointless, incompetent bureaucracy.

Incidentally, this payslip is back in London, and I'm not going back there to get it. They can wait for it, or they can accept a copy of their 'you were paid sick pay incorrectly' form, which should be proof that they know about the sodding sick pay. Probably won't be good enough, but it's all they're getting.

OK, I'm done.

So I moved to Leeds a week ago. It's been fine, apart from some minor irritations (like the one described above). I have appointed PAs - one has started, and is a star; one has accepted and will start next week; I'm waiting to hear back from the third. Then I will actually have enough support to do actual things. At the moment I'm doing a lot of messing around with my computer (I knew I should have brought The Sims with me) and watching TV, on account of being short of help and having moved house, thus being rather tired. But it will sort itself out soon. Leeds is a great town, and the uni is buzzing, even though most of the students aren't here yet. It's going to be a good year.* I start early induction for disabled students today, which is a really useful-sounding thing that the Equality Service** provides. I'm hoping they will show me how to cross campus and/or the city without meeting ridiculously high un-dropped kerbs all over the place. It will also be nice to meet some Real People - here I have one flatmate who shares my kitchen and shower room (I have my own toilet room though), and someone upstairs who I don't see, and that's about it. Although others will move in soon.

Must go to library soon. Really must...

*I have decided this. Yes.

**Which will henceforth be known in this blog as Disability Services, as they should be called, because I just can't say that weird-sounding PC-friendly equivocation by which they laughingly refer to themselves.

Saturday, September 06, 2008

Little Update

I had to go home, as the council front office was horrendously cold, so The Girl continued negotiating on my behalf, and did brilliantly. I've had an appropriate care package agreed, to be reviewed in six weeks. They still want to make referrals to entirely different teams of social workers, and I've said that if these people want to come up to Leeds to assess me, then they can...! So although it's currently a temporary agreement, they'll have enough trouble taking the package away that they might just not bother. Overall, a reasonable success, after only months of arguing with them and half a day sitting in a cold reception demanding a response.

Normal service will resume later. I'm entertaining Father, Not-Stepmother and Hearing Dog - and we've had a hell of a week: attempted burglary in our building, massive fight with the council, two dinner parties, working on recruiting PAs (some of the applications are just hilarious), and I'm trying to pack and move house. Fun fun fun.

Friday, September 05, 2008

The Council from Hell Strikes Again

Am in a somewhat desperate situation regarding my 'care' package and university; any advice much appreciated. This is pretty much a direct copy of a post I just put up on the messageboard – too stressed and busy to write something else at the moment.

I've been getting 10 hours a week of PA support for over a year. It's been massively inadequate as a package, but I've assumed it was all my council would provide. Apparently, when I went onto Higher Rate Care (and was dx'ed with EDS) I moved into the 'critical' category and everything changed - but no one bothered to tell me. Why would they? I would only have wanted more hours... 

I am about to move to Leeds for an MA course. I haven't lived alone since I've been ill. My other half and I contact our council in good time, asking for my care package to be reviewed. The weeks go by and I do not get a review. I kick up a fuss. I kick up a fuss some more. I threaten legal action. I get a review.

The social worker then 'forgets' that last week had a bank holiday in it, and is therefore unable to put my case to panel until the day before yesterday. Which is *one week* before I'm due to leave. I get VERY worried and tell him things are about to go wrong, but he says there's nothing he can do (he vaguely admitted responsibility, but did nothing to rectify things).

Fast forward to this week. The decision-making panel decides I'm too complicated to make a decision on - DESPITE THE FACT THAT I'M LEAVING IN ONE WEEK'S TIME (and I'm really not that complex) - and want to refer me to a *different* social care team (physical disability social workers rather than ASWs - I never knew there was a difference) and to the ILF. This because they think I should be having considerably more hours than I'm asking for. Does anyone ask *me* whether I want that? No. (I'm dyspraxic with social anxiety disorder, and I'm going to be living in one room, and I'm only used to managing 10 hours a week. What did they think my response to this would be?) Does anyone put in arrangements for (at least) my first week at university? No. I have innumerable panic attacks over about 36 hours, stop sleeping, start talking about not going to university at all (despite having paid half my course fees and some accommodation fees). My very long-suffering other half tries desperately to get the social worker to DO SOMETHING, but he claims he's being told to do the cross-referrals first and can't do anything else. He again admits liability, saying that his manager can't understand why I took so long to get an assessment, but is apparently not interested in the effects of this, i.e. no one gives a flying **** about me. I make clear statements that I am now holding this council legally responsible for any injury, loss of money or earnings potential, etc (although I rather doubt I could carry these threats out if something went wrong).

Having failed even to get this social worker on the phone, because he is an idiot who thinks emailing at 7pm after he's gone home is a good way to avoid having to take responsibility, I'm now marching down to the council offices. The Girl responded to his last e-mail telling him that we would be there at 9am, that we will be wanting to speak to his manager and anyone else relevant to the case, and that I will not be leaving without an appropriate support package (if only a temporary one while cross-referrals are made). While I'm there, I'll be pointing out how utterly stupid they've been, how potentially illegal it is that they're making these decisions without ANY input from me, and how I've recently been trained by a government agency (in preparation for piloting Individual Budgets) and therefore know a LOT about what the government thinks about paternalistic care decisions that don't involve the actual service user (nothing good). And I will get the local press and advocacy services involved as necessary.

I have HAD IT with this council, and they are NOT going to screw me around anymore. Last-minute legal advice very much appreciated, although I’ll probably not read it ‘til long after I’ve been arrested or similar...