Disability: a full-time job
I'm quite concerned that seven hours of support from my PA no longer seems adequate to get enough done. This is mostly because getting ready to go to work takes up quite a bit more time than getting ready to sit around the house watching TV used to take. I spent this morning trying to make a dent into my sprawling pile of paperwork. (This was important to do because it is becoming an independent life form and colonizing three rooms of my flat.) All I managed to do, before my PA's two hours were up, was to put it into little piles. Then suddenly I was on my own with sixteen terrifying stacks of paper called things like 'Access to Work', 'benefits evidence', 'tax credits', 'direct payments' and 'miscellaneous' (a large pile which includes a box of whiteboard markers, three Cura-Heat pads and the phone number of the social worker who has unceremoniously abandoned me until 2008). Then I spent the morning - the entire morning - working on my tax credits form. Which involved digging out a year's worth of bank statements (I file so badly that this alone took two hours). I regularly had to stop in order to burst into tears and/or throw the form across the room, especially when it occurred to me that all this work will go completely to waste and have to be repeated, because I already know I'll be turned down on last year's income and have to apply again based on this year's. So why do I have do this senseless thing? Because it's procedure.
The concept of procedure is generally sending me a bit loopy at the moment. Once I'm done with tax credits, I have to start sending off Access to Work forms so I can claim back my taxi fares (each form has to be individually signed by my manager, once a week, forever). Then there are the hundreds of phone calls - quite literally - that my Girl is making on my behalf to every flipping agency in the flipping world, from occupational therapy people to wheelchair services ("No, we don't want to assess you for a new wheelchair... OK, now that you've complained and told us you urgently need it for indoor use at work, we'll consider getting round to it in three months.. Oh wait, Access to Work are involved, well OK then, how's next week?) By far the most fun is the four months of hell we're having over a tiny lock that needs fitting to an insignificant side gate to my building, so that I can access my own home. With this, Camden Council are breaking the DDA so appallingly that we are about to see if we can take them to court. The lock would cost about £50 and take them twenty minutes to fit, but procedure means that instead we end up ringing them every day and writing seven-page letters and getting put through to people who refuse to talk to us because we're private tenants, even though they were happy to speak to us three months ago when they cheerily agreed to do the work. So we just keep on phoning. And nothing happens. And I still can't access my flat. ARGH.
Elizabeth's recent post on Disability Time got me thinking about how much we let medical services, care services, government organizations and the like run circles around us, and we don't object. But maybe we should. Maybe it's not in the best interests of my health, independence and well-being to spend my days off - which I need for recuperation, because I'm always exhausted - finding useless pieces of information about income that doesn't count for anything and filling out forms which will gain me nothing. Alas, though, I have no ideas for ways to fight this onslaught of procedure that makes disability a full-time job. Does anyone else?
And now I'm going to get back to this tax credits form, since after spending all morning on it, I spent all afternoon asleep, and it still isn't done. And tomorrow I'm going to work, because this full-time job doesn't pay anything. It really should.
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