Wednesday, October 24, 2007

Good and Less Good

I'm blogging to the tune of: Another Case of Milton Jones. There's some very surreal comedy on Radio 4 at the moment. I approve. Now I just await the return of The Museum of Everything and my life will be complete.

Good things from this week: There is a new addition to my extended family, and she is tiny and beautiful. Also, the wonder that is Camden Council has - rather grudgingly - agreed to give us £300 compensation for the appalling mess they made of that tiny adaptation to our side gate that should have taken them five minutes but actually took five months.

Slightly less good things from this week: I hate change. I really do. It makes me extremely grouchy and causes migraines and chocolate binges and panic attacks. I haven't eaten Opal Fruits since they rebranded them 'Starburst'. I spent a week frantically cleaning and reorganizing after Buffy ended. When I started going out with my Girl, I sat at the top of the stairs all weekend feeling deliriously happy, but nonetheless very confused. It is therefore not all that surprising that for the past couple of weeks I have been feeling quite rubbish. Even though, technically, nothing at all has changed. I have a new diagnosis - OK, not new, just newly discovered, and responsible for all my problems, from pain to anxiety: Ehlers-Danlos Syndrome (hypermobility type, also known as type III), a rare genetic connective tissue disorder. I already know everything I need to about how this affects me, and probably how it's going to affect me for the forseeable future. So I really should be nothing more than relieved to have the correct diagnosis and some possible treatment options. Except that I'm not particularly relieved. For the first week I was pissed off, stressed out, worried and depressed. Now I just feel stranded. At least when the dx was Fibromyalgia (which I still have, but apparently it's secondary to this 'root cause' thing), there was a possibility that I would spontaneously improve at some point, and that I could at least keep things under control. There are a wider range of possible outcomes from this one. There are also possibliities for treatment, but none of that comes cheap (of course) - and in the meantime, no one's telling me what I should do to help myself, while there seems to be a variety of opinions as to what the prognosis might be. And there's the fact, as I ranted about over at 'Ouch' earlier in the week, that my mother was trying to get me a diagnosis of something along these lines when I was two years old, and that had the doctors listened back then (or even just two years ago), many of my problems could have been prevented. But then, what can you do? I'm working on undoing some of the damage. Progress reports to follow...

Thursday, October 11, 2007

I'm finding work very tricky at the moment. It's nothing serious, but rather lots of little things that are starting to add up.

For example. Yesterday I made a quiet request to my line manager, who works in the same office as me, that she talk to the buildings manager about putting a phone on my desk. When I'm in the office I fold up my wheelchair and put it in a corner - because staying in it can give me back problems - but the phone is over at the other side of the room, so I have to get out of my chair several times an hour to answer it, and this can be an effort, as getting out of a chair is often harder for me than walking. Recently I've just stopped answering it at all, but this isn't ideal. Suddenly, about *seven* managers and maintance people start wandering into the office, demanding (loudly) to know what I want, telling me (more loudly) that it isn't possible, and then storming out leaving me feeling appalling. This very public display of my disability was then extended into an office-wide discussion of what might be done to give me access to the phone, from which two options were raised: I either have to move desks, which I'm not happy about as I'm in an ideal place for everything else, or I have to stay in my wheelchair and wheel over to the desk. I left saying that I'd think about it another time, as I was so upset that I didn't want to deal with it all. I don't think that my access needs should be discussed so publicly and treated so tactlessly - but I'm terrified to raise it, because I don't want to get a reputation for being difficult. I've already had two meetings with my line manager in which I said I wasn't happy with aspects of the job. None of this is making me look like a dedicated professional.

This is all being made worse because the ironically-named Access to Work are being utterly crap. I'm being made to wait forever for a specialist consultant to come and assess my needs at work, meaning that I have nothing official to give to my employers, meaning that all the little changes I could do with are not happening. When I've raised some of these, I've had very little support from my managers, and nothing is changing. But again, since none of these are major issues, I don't feel able to kick up a fuss about them. I'd look unprofessional and whiney.

Oh, and the job itself is turning out to be much less creative and interesting than I had originally been made to believe it would be. Working with the students is great, but I have very little responsibility, and there's lots I'd like to get involved with that isn't my remit. Also I've just been told that I have to see five (or more) students every (six-hour) day I work - and we're talking seriously intensive one-to-one work here, for which I need time to plan and write up paperwork. Fortunately, the other person who does the same job as me isn't mad on that idea either, so together we might be able to negotiate that down.

On the other hand, working with the students is REALLY great. And I've got several with interesting access and support needs. So this could eventually lead to more interesting work in the area of equality and diversity in a college. Which is something I'm very keen on.

So I'm going to sit here and nurse my stress headache, while thinking about whether I should just quit, or hang in there and try and work out what to do about the various problems. Blah.

I'm reading: The Book of Dave. A fantastically chilling juxtaposition of the present-day life of a deranged cab driver and the future dystopia that his unpleasant ideas create. Disturbingly thought-provoking satire. Oh, and it's by the awesome Will Self. Absolutely everyone should read this.

Sunday, October 07, 2007

Work, rights and the pointless law that is the DDA

I miss working in the classroom. I really, really miss it. My new job isn't going too badly, but the admin-heavy, individually-focused work is lacking the excitement of group teaching. Things may improve when the project I'm involved with gets off the ground. We shall see. I need to think about where I'm headed and what I want to do with myself in the future, both immediate and longer-term. The uncertainty created by ongoing medical stuff and an unclear prognosis is causing me worry. But that's for another post, when I've got it figured out a bit more clearly. In the meantime, being a disabled working person is tricky. Access to Work are utterly useless - the financial support they promise seems to be mostly mythical, and they create far more work for me than they improve things. I have been asking them if they could come and assess my needs at work for about four weeks now. No sign of them making any effort to follow through on that. I have written angry e-mails, TG has telephoned, I have thrown tantrums and threatened to hand in my notice - nothing. Helpful. Then there's the joy of trying to explain why it's difficult for me to cross three buildings in my wheelchair more than about twice a day. My manager's reasonable adjustment for that one was that I should have my lunch over in the other building. How do I explain that being isolated from my colleagues, my desk and all my resources and records is not exactly an answer? But I can't ask for any more considerations to be made for me at the moment, as the college has been making a whole lot of changes for me, and I've also been making it clear that I'm not exactly sure how well the job is going. Tricky, very tricky.

Did I write here about my accident? I fell backwards off a wheelchair ramp going up to a bus. It was a very badly designed ramp. I could have been very seriously hurt (although fortunately I didn't suffer too much more than a mild concussion and whiplash), and Marvin hasn't been right since (but then, he is a chair of a certain age). I am now too afraid to use buses alone. Needless to say, we are sueing the bus company involved. Not sure how that's going to go yet. I was quite disturbed to find out this week that the DDA doesn't cover the physical features of buses, only the service they provide - meaning that the law has absolutely no teeth at all when it comes to making transport accessible, and that the only way I can get some kind of improvement on these buses (and make sure this doesn't happen to anyone else) is to try and extort money out of them. This goes against most of my principles, but what else can I do? We live in a society where there are no individual rights, only corporations and capitalism. This distresses me quite seriously.