Monday, November 17, 2008
It turns out I'm more committed to the social model of disability than I realised I was.* I knew I was a fan - what else has changed lives, motivated mobilization against oppression, and brought people together as much as the social model has? But, being a person with a chronic illess (actually several chronic illnesses, including a mental health problem) as well as a disabled person, I've also long been aware of the shortcomings - not of the social model itself, but of what's been left out in its adoption by the disabled community. It doesn't talk about what Carol Thomas calls 'impairment effects' (which are different for everyone, but might include pain and fatigue). That irritates some people, including feminist critics (who think the social model is influenced by patriarchy) and postmodernist academics (never read Tom Shakespeare, never ever, very silly man), all of whom think it is incomplete and either needs altering or dumping.
And yet, despite all that, I remain convinced that the social model is still the most powerful tool we have for change.
It's an awfully odd experience, sitting in a classroom full of people who aren't even bothering debating the issue, since they've all decided that the social model doesn't need changing because it is the way to change the whole world, in all areas from euthanasia and eugenics to education and health/social care. It's brilliant, of course. (If a bit disappointing, as I wanted to sound off about Tom Shakespeare. Although instead I got to sound off about student media that publishes disablist crap and gets away with it. More seriously, I did want to talk about Liz Crow's amazing call for the disabled movement to start considering impairment. But I shall write about it in an essay instead. There's some incredible writing out there for those who want pain, fatigue, terminal illness and other impairment effects to be taken more seriously in the disability rights movement. I can recommend reading, if anyone's interested.)
But it's also got a less empowering edge to it, that ongoing experience I'm having of being surrounded by non-disabled allies (my class is made up of about a 3 non-disabled to 1 disabled student ratio this semester) who have made up their mind about how infallible the social model is. It feels just a bit too much like religious fundamentalism to me. And maybe even more dangerous than that, since it's not quite 'nothing about us without us', however fantastic, well-read, well-meaning and committed to the cause these people are. This became really clear to me last week, in a conversation with one of them (an awesome person, btw) who wasn't willing to listen to my opinion that life is, arguably, always worth living, even if that life involves quite a lot pain. He didn't mean anything negative; he thought he was representing people who didn't have a voice in that argument. But then, that was exactly the problem.
And it was then that I realised exactly why 'nothing about us, without us' is an absolute essential. Yes, it might leave non-disabled allies feeling excluded - that's a risk we'll have to take. And we need those allies, and should continue to welcome them into the cause. But they can never be allowed to speak for us. That's at the heart of what the social model stands for. Attitudinal barriers are everywhere - even among the most enlightened of non-disabled people. While it's extremely important to 'bring back' (to quote Liz Crow) our experience of impairment into the wider debates of the disabled community, the social model has to remain at the forefront of everything we do - at least until every single barrier, attitudinal or otherwise, has been purged from our society, and we speak for ourselves.
I should be getting some of this into an essay, but I've got a cold. (To quote The Girl this morning: "This is what happens in November. There are viruses, and I have them and then you catch them from me, and then there are wheelchairs..." Heh.) So instead I'm watching Stephen Fry in America, and a bit of Firefly. Best not to stress about the regular necessity of recuperation when you're a sickly child. Especially when said recuperation can involve tea and Joss Whedon.
*I have just spent ten minutes looking for a good definition of the social model online, in order to illustrate this concept for those of my readers who are not aware of it (all two of them). I could quote an 'original' definition, but there are at least two different versions, and I can't choose between them. All the online definitions I can find are ridiculously wordy, when it's really a very simple concept. A prize** for anyone who can comment with a good link that explains the social model in less than 100 words. Or who can do that themselves.
**The prize is metaphorical. Sorry.
Tuesday, October 14, 2008
So I am now able to kick my door open without injury, and on Friday I'm promised it will be fully automated. We shall see, of course, but right now I'm just happy to have injury-free entrance and exit to my own home.
As I said thanks to the Accommodation Services woman for (*finally*) arranging this, I heard myself apologise for being 'difficult'. Oh God. Someone please have me shot - I'm a really, really terrible example of a disability rights activist. (But seriously, how do you thank someone for arranging something about which you've been really quite forceful, while acknowledging both their hard work and your inconvenience, without either backing off from your original strong position or sounding ungrateful? Best answer wins the last gingerbread person from a lovely little homemade batch that my PA brought me the other day.)
Monday, October 13, 2008
The access nightmares here continue. I discover more and more that they are ticking the boxes for access, but don't always have what they promise. Last week I disclocated my wrist opening my bedroom door, which I have been complaining about for the past four weeks since I moved in - it's supposed to be being made automatic, but they're dragging their feet on technicalities. Meanwhile, I've been trying to get union lifts fixed, working on sorting out some fairly major PA problems, and attempting to persuade the police that the long row of cars *entirely* blocking the pavement (and therefore my access) to my own house is an issue that they need to do something about. No one is very interested in any of these, or any of the other dozens of DDA-flouting barriers I keep running into. Latest development on the nasty door: two security men come around to see if "the rodent" - my hamster - has been removed. It has. They are satisfied and make as if to leave. I say as politely as possible, "Are you able to tell me if there has been any progress on the door?" Apparently it is now 'out of their hands' and been sent on to be dealt with by a higher authority of some kind. Have I been informed about this? When The Girl rings Accommodation Services about it, do they know anything about this development? I expect you can work out the answer to both those questions. TG is currently working out who the registrar at my university is - she's going to make a high-level complaint. Looking forward to it. Not particularly hopeful though.
[insert three-hour-long break here]
I was going to write a paragraph on my reading into social oppression and disability, but I've just come back from a lecture *on disability in film* which was completely wheelchair-inaccessible, and I can't quite deal with the theory while there's so much practical crap going on with it. Maybe tomorrow you'll be lucky enough to hear about why Paul Abberley thinks it's important to consider issues of impairment which is created by society, just as much as the social construction of disability. (Pray that you are not.)
Friday, September 26, 2008
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
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...
...is 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
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
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
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...
Friday, August 29, 2008
I'm really getting tired of the very patronising 'Stop being so difficult' type responses I get when I argue my corner about something disability-related or access-related.
Yesterday, on a bus home, the bus driver tried to pick me up in my wheelchair - without asking what I needed, or whether moving me would be a good idea (a general 'no' to that one). He then refused to open the doors for five minutes while he played with the bus ramp, which wasn't working right - while I was standing and asking him to open the door NOW or I would fall over. His response was to tell me to "calm down". Ahem. (Yes, a complaint has been registered - although I have a ridiculous number of complaints against this bus company on file, and none of them ever results in anything useful like, say, basic disability awareness training for their staff.)
Today I exchanged rather strained e-mails with a woman at the accommodation office at Leeds, who wanted to change my plans regarding arrival times. I repeatedly explained that a) to change PA's hours etc only a week in advance can be quite difficult, b) that I need a lot of notice of such changes for this and other practical reasons, and c) that I prefer to be asked, not to told, about changes like this as a result. Her response was rather curt, to say the least. I have compromised, but not happily.
And don't even get me started on the access nightmare that was this year's Greenbelt, from which I am still recovering. There, in almost every poorly thought-out, ridiculously inaccessible situation, it was all my own fault for needing access at all. And I was of course very naive for wanting to make a fuss about it.
The impression I get in all these situations is that it's always *my* problem that I need something. My view, from a social model perspective, is that it's very much their problem - but communicating this is really rather tricky. I end with the reputation of being 'difficult'. (There already seems to be a general opinion at Leeds Uni that I'm a stroppy crip, which I am, but you know - I haven't even got there yet.) And I'm not all that pleased about this 'difficult' image I seem to be cultivating, as I used to be all accommodating and a bit of a pushover, and mostly I was OK with that.
Anyone else find they've got this 'difficult' reputation just for asking for little things that they need? All ideas on how to deal better with people who want to make inaccessible environments/schedules/demands *your* fault, not theirs, would be much appreciated.
Wednesday, August 20, 2008
Well, I was just fined £80 because the clock for my blue badge was set slightly wrong. By about fifteen minutes - if that. I had tried to set it more clearly, but obviously hadn't managed it (that's on account of being disabled and not always having particularly good fine motor skills). The bastards at the Council from Hell are going to get an extremely sarcastic letter - this is the third time this has happened to me in about the past four months, and the tickets were cancelled on the other occasions as they were proven not to be valid. Penalising actual disabled people with actual permits because you can't be arsed to fine the non-disabled people who park in blue badge spaces after 6.30 (we once had to phone the council about the people sat illegally in the space outside our house *all night*). Wankers.
Today was the day of access issues - some negative experiences, and some positive. We went to the Transport Museum in Covent Garden, where we were delighted to find out that not only do Freedom Pass holders go in free, but so also do their 'carers' (we took the freebie over challenging the terminology. We are bad people). Two for the price of no one. Very nice. The museum itself is beautifully accessible. Sadly, the people who were there were rude rude rude, and seemed to set out to make me feel like I was in the way all the time. Nonetheless, we saw some great stuff. Tube trains from the 1920s and so on. Fantastic. The Girl, the transport geek, was particularly enthralled. We have pictures of me sitting next to Routemasters (for those of you who don't live here: those are the now-defunct, so-called 'iconic', massively inaccessible buses that everyone's all nostalgic about, but which are rubbish). Well, we liked the joke, anyway.
Then there was Pizza Hut. Oh, that was interesting. Crips can access their upstairs area. The lunchtime buffet is in their downstairs area. They brought me a few slices of limp pizza with toppings that I didn't fancy, and I managed to reach some tomatoes and a bit of cucumber at the ridiculously-positioned salad bar upstairs. Lovely. I got pissed off and we went home.
Then we wrote a letter to our social worker - well, actually we just played with the letter I used for DLA to illustrate just how rubbish I am - in an attempt to get more support hours. The social worker, who came last week and is A Nice Man, is trying to get me a proper 'care' package for when I'm in Leeds. We shall see if this is actually achievable, once it goes to the (probably illegal, but what can you do) panel of shadowy experts where it is decided whether or not I am worthy of more hours. Hmm.
Then we went to the post office, where a woman who clearly had mental health problems was making a (rather violent) scene and being ignored by a very British bunch, and I was conflicted about it, and worried about her. And then we got back, having left our car for exactly fifteen minutes, and found we had a ticket because the clock showed 5pm when we had actually left the car at four minutes to five. I had been attempting to get it say 4.45. I thought I had been successful. I should know better than to let something like that slip. Nonetheless, since there isn't a marked interval for 'five minutes to' on the clock, and because I was *clearly trying*, and because if I try hard enough I can make it sound like discrimination which it certainly feels like, I am going to write and shout, metaphorically, at the wankers at the council.
And that was the end of my day of access issues. Tomorrow: Greenbelt, where I am on the Access Team, which is just as well, as they clearly need a crip to sort them out over there. I may or may not survive nearly a week in a tent. I will let you know.
Monday, August 11, 2008
Fortunately, I don't think it was injured.
That's been about the highlight of my day. I told TG that when she returned this afternoon (she's opening a show today), I would have done some reading and organized my notes. Um. Haven't, exactly, and there's about an hour to go. Have done other things, like e-mailing the solicitors who are handling my personal injury case (the bus injury - almost a year later, the case continues - in fact it's barely started) and sorting out some paperwork. It's truly amazing how things that make one (OK, me) horribly anxious most of the time are a darn sight easier than starting work. I think it's the enormous reading list, as well as the effort involved in 'breaking in' my studying muscles again (especially in a brand new subject that I don't know all that well yet), that's making me a bit 'wah'. I'm sure I'll get over it. On the couple of occasions I've made it to the British library, it's gone well. I just need to find a place I can work successfully. Possibly one where they serve tea. Or maybe the local pub (which is more accessible than any of my local coffee places, amusingly).
The planning for Move To Leeds 2008 carries on apace. On Wednesday we take my wheelchair to the place in Hertfordshire where they're converting it to the powered-wheel system. I get it back the following Monday. So I shall be getting around exclusively by car for the rest of this week. Meanwhile, Camden Social Services (*spit*) have promised to let me know by the end of this week when their assessment of my care needs/support hours will be. That's going to be fun - I need to persuade them to bump me up from 10 hours a week to something closer to 30. And they aren't going to like it. And I have some knowledge of the law to fall back on. Hah.
Talking of support hours, I have a dreadful lack of PA at the moment. This has caused me to go without antidepressants for about a week, as I couldn't leave the house to stock up. It occurs to me that this should *never* be the case (especially after the terrible mess that were Friday and Saturday as a result). Neither should I be unable to eat properly - I've not had lunch because I don't really have anything, although I'll probably scrape up some pasta in a minute, but I haven't had fruit or vegetables for about a week, and we've been living on takeaways while TG is massively busy with the show... Well, it's all evidence to throw at the Council From Hell and tell them that this situation should not be arising.
And talking of PAs, I'm off to ring my last hope for cover for this week. Let's hope she can do some hours and I can have a life. Would be nice.
Thursday, August 07, 2008
Context time. I was supposed to be seeing one of the UCH-based EDS specialists this morning, but he has apparently left. (Bit of random gossip for EDS-y types - the future of the EDS unit at UCH may be in doubt. You heard it here first, and all that.) So I got passed over to his 'replacement', a very knowledgeable rheumatologist with an interest in EDS/HMS. He was funny, respectful and focused - he fired questions at me at a rather fast pace, and I'm pleased to say I kept up with him. "How long have you been in the wheelchair?" was answered with a pointed "I've been *using* a wheelchair since..." and a clarification of exactly how I use it. (Side note: My CBT woman will be so proud. We've had about three 'wheelchair pride' type sessions, and we practically planned my answer to this question together.) I answered other questions very well, too. I think I passed. Or something.
Anyway, my plan before this session had been to convince the specialist that I wanted a break from medical intervention, except where absolutely necessary, at least for a few months. I assumed convincing would be the order of the day, given reactions I've had to similar ideas before, i.e. less than positive ones. The reason for the 'piss off, doctors' approach is mainly that, as much as physio might be some help at some point in the future, at the moment it's just pointless; thanks to my fun combination of impairments, it's doing very little except exhausting me and causing more pain and difficulty, not less. And there really isn't anything else for EDS, other than basic pain stuff. And I'm rather keen to, well, get on with my life. Ideally with an MA course too. But we can't have everything.
So there I am, all prepared to have to convince the good doctor of the wisdom of this possibly-stupid move. Except that, when we had finished with all the 'self-management is wonderful' stuff, and had written SELF-MANAGEMENT! on my notes more than once, he announced that since I am doing so well at coping for myself, he wants to discharge me completely. Um, sorry? I pointed out that occasional check-ups from a consultant are advisable when bits of you keep threatening to fall off - and also when DLA renewals are due, but I didn't say that one in so many words. He agreed to see me in a year (a YEAR!), but in his own pain management clinic, due to the confusion over what will be happening to the EDS unit. I was up for this, and asked about pain management courses, which might be possible after that appointment in a year's time. Then I asked about stopping physio, and he said that as long as I'm doing an agreed exercise programme, he was happy for me to drop it. He freaked out The Girl by saying that he hoped she would be joining in the exercise with me. (She has since said she might consider joining me at pilates. I'm going to hold her to that one.) And, finally, he made me do a massive double-take by telling me that I need to 'practice what I preach' - re Disability Studies - when it comes to my own medical condition. Random. Seriously very random.
So then I saw my physio, who was suddenly in agreement with him - even about intelligent use of the wheelchair, which is a bit of a change for her. (I am wondering if the whole of UCH has suddenly got round to sitting through Disability Equality Training.) She's given me ideas for an exercise programme that she would agree with. Her ideas are all quite dull, apart from possibly the pilates. I'm going to see if I can find out about more interesting wheelchair-based sport at Leeds. I'd like to see the physio's face when I go back in a year and tell her I've been doing martial arts or boxing. Heh.
I remembered later that I had other things to ask the consultant, such as for help with persuading my doctor that I need pain medication that doesn't make me constantly sick, and at doses that my EDS-y body doesn't go "Ha ha, think you're going to beat me with *that*? You are tiny and insignificant, you weakling Codeine Phosphate" at. But I was so distracted by the general WTF? reaction that I forgot. Anyone who might have any useful advice about persuading some very medical-model GPs over The Medication Issue, answers on a postcard please. Or in a comment. I think I shall pop over to see Lovely-But-Expensive Fibro Consultant before I go off to uni, if I can arrange it, as he was useful for persuasion over sleeping pills - another battle I keep having to have with GPs (silly buggers that they are) - and maybe he'll have medication advice too.
But mostly, it seems that for the moment, I am Done With Doctors. I'm more than a little pleased. I have eaten a great deal of celebratory comfort food, including doughnuts, chips, cheese toasties and all manner of leftovers out the fridge. Apparently, being freed from medical control is not so good for my waistline. Ah well.
Oh, and some of my comments were featured on the Ouch podcast this month (it's just gone online). They read out the least-funny of the things I wrote, of course, but it did seem to lead to some kind of debate over whether Nazis are better than lesbians. Or something. So at least I inspire interesting discussion. Or something.
Tuesday, August 05, 2008
This is irritating me. There are a whole number of reasons why disabled people need cars - at least as many are there are types of impairment and ways people are affected as a result. I can only talk about my situation. But I know how much easier my car makes my life, and how it's all-but-impossible to get very far without it.
For example. I am trying to get to the British Library as much as possible in the next few weeks, because my dyspraxia means I need to start my reading list now or I'll never get through enough of it to pass my course. I live quite near to the BL, and it should be easy to get to. But since I find buses so hard to use (and I have other access issues at the library itself), and I only get a few hours of PA support a week, in order to go by bus I have actually been sacrificing showers and decent meals so I can take someone with me. This is, let's face it, ridiculous.
So I'm considering what my other alternatives are, given that parking is massively restricted around there. And all I can come up with is that I go on crutches, walk *much* further than is healthy for me between the bus stop and the library, and spend the next day (or two) in bed. This would certainly save the planet better than getting dropped off in the car by The Girl, or similar. But I don't see it as an acceptable alternative, because I need my energy for other things (like those showers and meals). Non-disabled people, who in this case could take the inaccessible tube, generally have FAR more choices about how they get to places, and they don't have to lose half the week in recovery from such a simple journey. Yes, it can be inconvenient for them too that car-driving and parking are regulated in London. But it's much more of a problem for those of us whose transport options are limited.
And then people say to me "You don't need a car in London. Transport is accessible there." And you can probably see why I get pissed off by this. I really, really do wish I could do without a car. I hate driving, and I lived perfectly well without a car for many years (and did a lot of five-mile walks, which might be partly responsible for some of my impairment now). But the complications and limited choices of transport now make it too difficult *not* to have a car as an alternative.
I used to be quite vocally 'green'. I was never a big campaigner, since my campaigning energy generally gets all used up on more immediate things, but I was good about my own use of energy. I switched off and unplugged devices. I did a lot of hand-washing, and only put very large loads of laundry in the washing machine. I barely used the central heating. I recycled absolutely everything that could be recycled. And I didn't have a car. But now, I discover that these things are really very tricky to do quite so well when you're low on energy, or have specific disability-related needs. Kate Ansell does a much better job than me at explaining why, in her Ouch article 'How Green is my Disability?', in which she pointedly says: "It's amazing how many Green organisations will scratch their head, shuffle their feet, and tell you that they have never done any work specifically on disabled people and the environment ... which is a shame because, hell, if you're anything like me, you'll really need the advice." I want to be more green. I want to recycle everything I can (but I don't always have the energy to put into separating recyclables and other waste - though I try). I want to turn off appliances more (but the last time I remembered to unplug my mobile phone charger, I fell over - but I try). And I really, really want to drive less (but another temporary PA has just told me she won't be able to carry on helping me, and the car is therefore my only way to get to a place with a pint of milk today - but I will try to stagger there on the crutches if I can face it). Green and disabled. Is it even vaguely possible?
In not-entirely-unrelated news, I'm reading Allyson Beatrice's 'Will The Vampire People Please Leave The Lobby?', a fantastic memoir of Buffy fandom (made more fun by the fact that I remember much of the online and some of the offline fandom events she describes). It was a birthday present from the wonderful Lisy. It is making me seriously miss Buffy fandom and the Bronze (our old official bulletin board for all discussion Buffy-related). These days, I mainly post two places - the BBC Ouch messageboards on the topic of disability (which can get serious and wearing), and the Ship of Fools posting boards on the topic of religion (which can get serious and wearing). Both places also have great capacity for fun and laughs. But I'm remembering the Mentally Diverse Morning Crew (TM me) and our British-and-Australia-based complete randomness, back in the days when I actually was indeed very mentally diverse, and the UK Posting Board Fan Party (I only made it to one, but have some awesome friends from it) and other fan meets, and my unbelievably in-depth two-year-long discussion with one friend about whether Angel was responsible for his crimes committed as Angelus (I was studying English and therefore had nothing better to do with my time), and all sorts of other Bronze-based fun. I had a birthday party a couple of weeks ago, and a fair number of former Bronzers turned up. This led to reminiscing about such odd things as The Time They Were On The Big Breakfast With Amber Benson, and I remembered with amusement (as Allyson points out in the book) that it's still not quite socially acceptable to explain at parties that you met through a internet board that discussed a TV programme about vampires...
So, as great as it is to have two online posting boards that I completely love, it's just not quite the same as when everyone *just got it* at the Bronze. As much as I love all science fiction and fantasy telly, nothing else has inspired the same levels of fandom discussion and friendship, either for me or for lots of others among those old BtVS fans. Lisy mentioned yesterday that there's a new Joss Whedon show on the way soon (with Eliza, no less). Maybe that, or something similar, will bring us or other like-minded cult/sci-fi/fantasy fans together in a similar way. Or maybe it won't, and I'll keep on using the net to have deep, slightly irritated thoughts about the social model, and process theology, and the nature of the disabled community, and why churches aren't more welcoming to people who are different from the norm, and why on God's earth shouldn't women be bishops, and inaccessible transport. But today, mostly the last of these.
To end with a bit of fun: the lovely Linz, over at Living With Fibromyalgia, has tagged me for a 10 Things You Didn’t Know About Me Meme. I think I've done this quite recently, but have thought of a few more, so there's just five. Apologies for repeats...
1. I'm a huge fan of most TV-based science fiction and fantasy (which, thanks to this post, you are probably now aware).
2. I'm thoroughly addicted to Kraft 'Mac and Cheese', that American aimed-at-kids stuff that comes dried in boxes. The Girl brings it back for me when she goes to visit relatives in the US. She bought me six boxes for my birthday. I was overjoyed.
3. The Girl and I share a common Massive Pet Peeve about non-badge holders parking in blue badge spaces. It comes from when I was already mobility-impaired but didn't yet have a badge, and refused on principle to park in blue badge spaces. We have reported people to the local council, put sarcastic notes on windscreens, and recently The Girl blocked an extremely rude offender into a space in a supermarket car park while she ran off to find a member of security staff. It was a fantastic moment.
4. I like pretty mobility aids. I own three colourful walking sticks, three pairs of crutches (one foldable) and a green wheelchair called Luna (I used to have a blue powerchair called Marvin too, but there was no more space for him, so we found him a new home. I hope he will be happy there).
5. There is currently a gazebo in my garden.
By the way, Linz's blog is a fantastic source of FMS-related research and information, which I can't recommend highly enough. Bookmark it! Happy Tuesday, people.
Wednesday, July 23, 2008
There's a word that I hate. Not because there's anything wrong with it, in itself . Just because it doesn't apply to me or my partner or our relationship. And that word is 'carer'.
Today, The Girl and I were at the cinema. (Two films in one day, because we are odd like that. Wall-E is awesome. Take your children, or indeed random kids you found on the street outside the cinema. Also Prince Caspian, a film which I liked immensely for nostalgia reasons, but also a film which The Girl crapped all over on the way home. Silly Girl.) Anyway, I was on crutches today, as we were able to park near the cinema. The height of the reception desk was so high that the cashier couldn't see that I was using crutches; to his view, I was invisibly impaired. I wonder whether this is the reason for what came afterwards, or not. I think so. The Girl thinks not. We are ever in opposition. It is the wonderful way of things on which our relationship is based. (We bicker like an old married couple. Seriously.)
But I digress. So I'm at the cashier's desk, and I hand over my Cinema Exhibitor's Association card, which entitles a friend to go in free with me. And they proceed to ask two very odd questions - both times. First, "Where's your carers' card?" (whatever that is - we wonder whether the guy was actually asking for more 'proof', which is fucked up and also just irritating, as my friends don't exactly travel with proof of their friendship status in relation to me). Second, "Which of you is the carer?"
I was insulted by the way the question was phrased, but on the first occasion I was floored by it, so I pointed out The Girl. Second time around, however, I decided to take a stand. "I don't have a carer. This is my assistant*. A better question would be, which of you is the disabled person? So perhaps you should ask this next time." (Although I have since realised that even that question would be stupid and irrelevant, since the cashier can never decide which of us gets to sign off on the use of the card.) The cashier was apologetic, but said it was the language he had been taught to use. (I have sent a slightly sarcastic complaint suggesting Disability Equality Training, in response to this. Let's see if they ever reply.)
So we get home, and we look up this "Carers' Card". I'm really not sure if it's something separate to the CEA card, or the same thing but they didn't recognise my card as this. Or if it was the weird 'more proof' thing I mentioned above. Which is still fucked up. Either way, though, I am not happy. I am TIRED of many things. Tired of being spoken about as though I am stupid. Tired of people talking to the person with me, instead of to me - and this happens regardless of whether I'm usig my wheelchair or crutches. And most of all, tired of that bloody word, which my partner and I continue to fight against, because she is NOT my carer, nor does she wish to be, nor do I wish her to be. It is not that she doesn't assist me; of course she does. But that's just a regular part of our life, as far as we're concerned. I am lucky enough to have PAs (for a paltry few hours a week), but even if I didn't, she wouldn't be a carer. She's my partner. That is the end of it, as far as I'm concerned. Not, sadly, as far as everyone else is concerned.
As I walked away from the counter, I pointed out to TG that I used to be a middle management-level teacher with several years of professional experience to whom people spoke to directly and often with slightly less of a patronising tone. Not that my job, former or present, is important; just that I can't cope with the shift to a general assumption that I am stupid and need constant looking after. Half the time these people are surprised I even manage to leave the house...
On the Ouch board after I posted this, Lisy amusedly reminded me that we are going to an REM gig together in August, and she is going as my 'free ticket', mainly because she's driving so she's going to be the nearest thing to a PA that there will be. We just can't wait for them to ask "Which of you is the carer?" Heh.
Note: I in no way wish to disparage family carers here. I know that many people are out there doing a fantastic job of supporting disabled people, often with little support themselves. But that's not my point. This is about my relationship, and assumptions made about me and my partner - on many levels. Oh, and about the utterly crappy service at Vue Finchley Road. Don't go there. Just don't. Both lifts will be broken down, you'll pay a fortune for parking despite having a blue badge, all the accessible spaces will be full with cars which are not displaying blue badges, and the cashiers will ask you really stupid questions.
*Saying "This is the woman I sleep with" instead might raise eyebrows...
Monday, June 23, 2008
NB: I wrote this on the train on Saturday, then found that Blogger doesn't work on mobile devices. Typical. It's really out-of-date now, but I will do a further update soon. Not immediately, as I am exhausted from a *really* complicated weekend...!
Ha. So my aim of posting nearly-daily has, um, not happened. To be fair, I lost my computer for a week due to a software problem. (It has now been returned to me relatively unscathed, thanks be to God and all Her angels. We all know what life as a disabled person without a computer is like. I don't wish to be reminded further.) I am currently attempting to post from my PDA - beautiful thing that it is, even though it turns itself off at inopportune moments and forgets to tell me about missed calls for hours - although this is going to be tricky bcause Blogger doesn't like mobile devices much. So here I am, trying to post from the train. My mother is ill and I am off to Dorset/Hampshire to look after her for half the weekend. (Don't point put the irony. I know.)
Things I have learnt over the past couple of weeks:
- You can shout about the Disability Equality Duty all you like, but if a public body chooses to break the DDA, you can't actually do much about it. Well, OK, you can get your long-suffering girlfriend, who is much better at being assertive than you, to ring and pretend to be you and demand reasonable adjustments, but it will be a massive effort. In the end, the company in question - the DVLA, who at first wouldn't let me answer their medical questionnaire in a typed format - got their information in brown and blue ink, because my printer cartridge had run out. That'll show 'em.
- Disabled people are the new mothers-in-law. It seems we are the last minority group it's still considered acceptable to make jokes about. I encountered twenty-six crip jokes at the 'Edinburgh and Beyond' stand-up preview show on Thursday night. Which is really rather a lot in a two-hour show. And made me wonder exactly why it's suddenly more acceptable than ever before for crip jokes to be made by non-crips, when white people wouldn't make jokes about black people, and even gay jokes are almost outlawed these days. Hmm. I had complex and meaningful thoughts about this, but I left them over on the Ouch messageboard. So I forget.
- Despite a) being very political, b) having been disabled most of my life (arguably all of it) and c) having done bits of disability rights campaigning since sometime a bit before forever, it seems I still have some massive hangups about physical impairment and mobility aids. Am in the middle of discussing it with Lovely CBT Woman (I can't bring myself to call her a therapist - it's just too American). I'm wondering whether part of the reason my doctors react so negatively to my wheelchair use is because I give out some kind of negative response to it myself, that they're picking up on. And I'm trying to work out how to deal with this - and with doctors generally - and with the whole area of having recently become visibly disabled. Politically speaking, it shouldn't bother me. Personally and honestly speaking, it does. That's not something I should be pretending about, just because the social model says my impairment 'shouldn't' be the focus of my life and philosophy (although actually that's an interpretation of the social model, possibly a wrong one). Playing 'I'm fine with this' when I'm not, always, is only going to make me crazy(er).
- London, while not the most accessible city in the world, is a shedload of fun if you like people-watching. All you need to do is go to Waterloo station and hang out. You'll see everyone from the gentry going to Ascot - you can spot them from entire platforms away, and they look like something straight out of the 1930s* - to adult identical twins dressed exactly the same, right down to shoes and backpacks. Seriously. Fun.
So, on those exciting and thought-provoking and otherwise truly inspired points, I leave you. Mainly because we've reached The Countryside, and shortly I won't have enough signal to post this even if Blogger does sort itself out and work out who I am. So. See you soon, the people.
*"A Doctor Who episode waiting to happen," said The Girl.
Tuesday, June 03, 2008
But as I am now so bored that my brain is dripping out of my skull via my ears*, it's time for Three Things, aka What I Write When It Has Been A While And/Or I Have No Imagination.
1. Physio: a good NHS experience (no, really)
While I've never much liked the whole concept of physiotherapy, and am still not sure whether it's going to do me any long-term good, I am nonetheless currently living at UCLH. And, weirdly, it isn't all that bad. It appears, so far, to be that elusive thing that I always suspected was a myth: a reasonably good hospital. Just comparing it to the faded yellow hellish halls of the Royal Free, where last year I suffered at the hands of some truly incompetent idiots who claimed to have physiotherapy qualifications, is interesting. There, the hydrotherapy pool was up (up!) twenty steps and no one was ever free to help me climb them; they stuffed up to eleven of us in a tiny pool together while a physio sat on the side reading a book and occasionally looking up to check we hadn't all drowned; a laminated chart of exercises was shoved in each patient's direction and we were told to get on with it; there were two inadequate changing rooms with no secure facilities for valuables; at the end of my six allocated hydro sessions I was basically refused any more physiotherapy on the grounds that "it doesn't work for fibromyalgia", via a very rude woman who phoned to tell me this (clearly no one could be bothered to give me an actual assessment in person).
And then I go to UCLH. I am having two types of physiotherapy there this summer - land physio and hydrotherapy. Beautiful new building with some lovely facilities. I arrive for my first hydro appointment and am shown around the hydrotherapy area by the department's dedicated receptionist, who shows me into one of the many large, comfy, accessible changing rooms and puts my locker key in a safe place. There is a physiotherapy support worker whose sole job seems to be to make sure that patients are OK. There are a few shallow steps down into the pool (it's like a miracle of engineering). I am introduced to the physiotherapist - it's just me and her in the pool (she apologises because next week there will be one or two others). Instead of just handing down a set of physio exercises from On High, we have an actual discussion about what hurts and what needs strengthening and so on. When some of the exercises sublux my joints, she revises the programme for me, and warns me against overdoing it. She suggests that I decide for myself whether I come weekly or fortnightly, in discussion with my primary physiotherapist. She refers to my overall programme as one of "long-term management" and says that she would like to give me exercises that I can take to my weekly swimming sessions (it's not entirely fact that I go swimming every week, but it is an aim) so that I can continue them when I'm not having regular hydrotherapy anymore.
Seriously. I didn't realise the NHS could work like this. What a shame I've never encountered it before, and probably never will again. My other physiotherapist isn't quite so great, but she's OK, and sensible, and happy to take things slowly with me. The jury remains out on whether it will help. It's some help to about 70% of EDS patients, but with very varied results, and it partly depends whether the physio knows what they're doing. I'm still working out whether mine does. We shall see.
2. The Girl
She is away. This is sad. She is back on Wednesday. This is good. I am living on ready meals. This is necessary. I am giving up the diet. This is important so that I do not entirely lose my mind. I will be curvy and happy and occasionally eat chocolate and not go mad with hunger. Hurrah.
I don't have the first clue what to do about this. I've been off for four weeks. I have no energy and can barely get out of bed some days, and am in massive pain the other days. In reality, if I can't get in on Monday, it's time to call it quits. Everyone in the entire world has been telling me this, including my King-of-the-Protestant-Work-Ethic father (who offered to give me money if I was poor, and then said he would put it in a brown envelope if it affected my benefits - aww!) But I still need to persuade myself. Myself is not easily persuaded on these things. The only person who seems to think I should have a "good ending" (now there's psychobabble for you) at work is my CBT therapist. But CBT is another story for another time. And I have written quite enough for today.
Suffice it to say that I am bored, that I need a new project, and I will attempt to write about my attempts to find one. Shall we see if I can post nearly-daily for a while, again? I can't. But I will try. Aren't you all so lucky? I think so.
Saturday, May 03, 2008
I just can't.
I've tried. I so wanted to. I spent a large amount of Thursday - Blogging Against Disablism Day - making a truly inspirational effort. And then the same yesterday. But I can't. Somewhat ironically, since it's me (and it's BADD), I am currently completely unable to be political about disablism.
I'm a political blogger. And BADD is something of a political event for net-bound disabled writers. So I tried. I wrote about privacy and choice and other very worthy things. And then I saw that it was dull, and I could not be arsed. Sometimes, dealing with disability - and disablism - on a daily basis can mean ending up being too bloody tired to be a cause. Today I just want to be a person – and a ranty one, at that. Recently it feels like it's all fashionable to pretend I’m not a person, and that’s ticking me off. Sometimes it’s others who do the pretending. And sometimes, it’s ‘us’. That's a current cause of some irritation, too.
When you deny me choice, you don't allow me to be a person. You took away that chair without asking because you saw a wheelchair. You opened that door without asking because you assumed I couldn't manage it. You keep making me cups of tea without asking because you think I can't carry them. The chair looked comfy and I wanted to sit in it, but you chose for me. I was fine with the door until you got in the way of it, but you chose for me. I like my tea the way I make it, but you chose for me. You see the mobility aids. But I am a person.
When you get inappropriate with the questions, you don't allow me to be a person. You encountered a pair of crutches, a visible manifestation of an illness, and you decided that its visibility made me public property. I was trying to be professional; you constructed me as vulnerable. You see an illness. But I am a person.
When you think it's all about appearances, you don't allow me to be a person. You actually thought it was acceptable to *loom* over me giving me evil looks as I got out of my car, because you thought I didn’t look disabled enough to be entitled to that blue badge parking space. You *loomed* all the way until I got my crutches out. Then you realised that your impairment was in fact less obvious than mine, so you kindly left me alone. You see hierarchies and my place in them. But I am a person.
When you try to fit me into a little campaign box, you don’t allow me to be a person. You read political statements into everything from my choice of crutches over wheelchair (sometimes they’re just easier to use) to my willingness to accept treatment (it's only physiotherapy - it doesn’t mean I hate myself and want to start a small-scale eugenics project). No one’s more keen on empowering language than me, but just occasionally I’d quite like to refer to my ‘disability’ without getting corrected. On account of how sometimes it makes more grammatical sense. Not because I’m a traitor to a cause. I’m not a cause, so stop seeing one. I am a person.
And when you decide I'm *just like you* because we share a diagnosis or a symptom or a bus route, you don't allow me to be a person. You thought that I would - should - feel the same way about my condition or my crip-dom as you do; that I should try the (*ahem*) miracle cures that you're so taken with; that your experience of disability is the only experience. And when I didn't take you up on that, you thought - said - that I was mad, bad or selfish. You saw a circumstance that you thought you knew all about. But I am a person.
Tomorrow I expect I'll be political again (and maybe a bit calmer). But today, this is what disablism's all about. The failure of others to see me as a person. Our failure to see each other as people. It’s so ingrained in society that trying to do anything about it is really quite a big undertaking. So why are we doing it to each other, too?
“The personal is political” - Carol Hanisch, 1970
Sunday, April 06, 2008
Things I Have Done Recently: acquired a new-to-me PDA (still deciding if it's the right model for me - might sell it on and get a smaller one); worked consistently far too hard at, well, work; visited the sister and brother-in-law - and niece! baby niece! completely adorable fantastically happy baby niece (who does the cutest little rocking thing if you sit her on your lap and hold her hands); had a physio assessment that's actually going to lead to treatment (I have to go to orthotics and get insert thingies for my shoes - urgh); was too tired to do anything for about a month, so played a lot of Sims.
Unrelated to anything, but I just remembered: last week's TES has an article on disabled teachers. This appealed to both the education and the disability studies geeks in me (my PGCE extended research project was about inclusive education). This is a good sign, in the sense that disabled people are finally being allowed to teach - it used to be nearly impossible for people with many impairments to enter the profession, but it's starting to become less so. Still, it's a really quite amusing article. It's full of patronising disability myths ('so-and-so is blind but compensates with spectacular hearing') and medical-model terminology ('so-and-so suffers from a degenerative disease'). More evidence, if I needed any more, that the education sector hasn't got the first clue what to do with disabled teachers. The concept messes with their tiny minds. Still, it was on the front page of the TES Magazine (along with a big, largely irrelevant wheelchair symbol). So that was nice.
Friday, February 29, 2008
Apologies to everyone who's posted interesting comments to which I have yet to respond. I'll get onto it when I'm not dosed up to the eyeballs with tramadol. I should probably go and sleep that off.
Here are the updates.
- Work very busy. Got an actual apology for "the confusion" re my sick pay from the head of Personnel, and an offer of five extra days of annual leave to make up for the days I wasn't paid for over Christmas. Wonders will never cease.
- It's quite funny that, just as I quit Ouch!, two online friends from two different countries are about to be featured on the podcast. The global disabled community is really rather tiny.
- Am on CSI season six.
- Still on the diet.
- TG minus one, and I am happy.
Thursday, February 28, 2008
"As far as I'm concerned, doctors aren't worth seeing unless you already know what you need and can spell it out for them. And half the time, you are worse off for having consulted them in the first place."
This was in response to Elizabeth's recent posts about the way her doctors treat her. Elizabeth herself, in a recent post, really got me thinking when she mentioned gender in conjunction with the very poor way she gets treated by medical types. I don't think it can be a co-incidence that I know several men, mostly older than me, with life-altering conditions who have retained their autonomy and capacity for choice over treatment - in stark contrast to my situation and that of other disabled women I know. My father, for example, who entirely self-manages his bipolar disorder and is treated with respect by his audiologists in relation to his deafness. He's in his fifties, he was non-disabled until he was in his thirties, he went to Oxford, he sounds and appears very middle class, and he's a man. I think that may be a near-perfect combination of factors for demanding respect from medical professionals. Whereas it seems that having a condition that doesn't show much in tests and is entirely invisible, along with being female, young, gay and constantly anxious around doctors, isn't the best recipe for success with the medical profession.
Today, I finally got a letter - a month after my assessment - from the patronising, dimissive and really quite stupid psychologist who recently assessed me for CBT. In much the same way as with my quest to get some physiotherapy, my attempts to get support with anxiety have led to my being sent round and round and round the houses of the Camden PCT (which seems, as The Girl and I noted today, to have a policy of only employing idiots). It is now nine full months after my first assessment with a psychiatrist at the mental health centre - it took so long partly my referral got 'lost'. When I worked out that something was wrong, I asked my GP to refer me to their own practice psychologist, who refused to see me as (once again) I'm too complicated a case for them. Then last month, with the referral finally having gone through, I had the mental health centre psychologist's assessment (yes, it really is just one long never-ending round of assessments with this PCT). Her recommendation in this letter she's just sent me? She's referring me to the psychologist at my GP practice... It's physiotherapy all over again. Referral after slow referral, and everyone says I'm too tricky. Oh, well I'm so sorry for bothering you with my complex case. How appallingly selfish of me.
Beyond that, though, it's the tone of this letter that's really pissing me off. There are several references to what I 'believe'. She believes that she has had Ehlers-Danlos Syndrome all her life. No, I think what I told you was that it's a genetic condition (is this not a fairly straightfoward description? should I have brought out little pictures of DNA strands?) for which I have medical evidence dating back to the age of two and which a consultant recently *confirmed* that I was born with. (Not that I can understand why this was mentioned in the letter anyway - I can only assume that she wanted to cast doubt on my 'belief' about it.) She believes that not a great deal can be done to help her with pain and mobility. Actually, I was just told by an anaestheologist in a pain clinic that they will not be giving me any other pain treatment than what I've already got (which is pretty much useless), and I've been having endless assessments and sitting on endless waiting lists for physiotherapy for six fucking months. But never mind that, because clearly it's all my own fault, as ever. She told me that she did not want to be seen alone because of her severe "doctor phobia", so I saw her with her partner (her quotation marks). I'm not even going to start with what's clearly behind that one. She has had "brief" medical advice and is being referred to UCLH (again, her quotation marks - I don't know what they're about). This sentence makes light of my two-and-a-half years of hell over trying to get a diagnosis and treatment against the determination of the health services *not* to take me seriously, and of the incredible mess of mis-diagnosis that meant I had to TELL the doctors what was wrong and who to refer me to before I could get any help at all.
The difficulty is that there's nothing overtly wrong with any single reference or phrase in this letter. It looks OK. But I know - and she knows she's pointing out to me - that I pissed her off by asserting my own agenda, by challenging her assumptions, by having opinions, by insisting on having a witness in the room during my assessment, probably even by turning up in a wheelchair.
It stops. Now. I refuse to live in this no-treatment, no-interest, no-help limbo between 'too complicated' and 'coping too well'. I would rather go without medical 'help' except in emergencies, and for basic medication. No more assessments - beyond the one for physio at UCLH, which I have to have, but which will be the last. No more tests. No more consultations. I will see my GP for medication (and she will give me some pain relief that I can actually tolerate). I will go to this psychologist that I've been referred to, unless they refuse to see me (again), in which case I will walk away - I will see them on my terms, and I will personally be arranging for detailed explanations for them regarding EDS, dyspraxia and my long medical history, and this will be taken seriously or I will not see them anymore. Easy. My life. My choices.
And I will be replying to this idiot's letter with as much medical evidence, and evidence of my mobility and other impairments, as I can dig up from my ever-growing medical files. Just so she thinks twice before she refuses to take a disabled patient seriously again.
Any further advice on how to be taken seriously by a medical profession that isn't sure whether it believes in your condition and doesn't care anyway would be very, very much appreciated.
In other news, I need a new writing gig (for complex reasons that I won't get into). I'm thinking about where to send my stuff and who might be interested in it. More thought needed. Hmm.
TG minus two days - thank God
Tuesday, February 26, 2008
- I have discovered that, not only does BBC Three show Torchwood two days early, it also puts it on the iPlayer the same day. Far too exciting. This week's episode was grand. Loving that, and also Ashes to Ashes (even though, as I was saying to Lisy today, it doesn't have the ambiguity that made Life on Mars so interesting).
- I have a dyspraxia assessment lined up for the weekend after next. This could be really good or really bad. Technically, my EDS diagnosis may preclude me from getting a diagnosis (for rather silly reasons relating the fact that medical types haven't done enough research into these impairments, and the connections between them, yet). Which won't change the fact that it's been clear I'm dyspraxic since forever, that I was given an informal dx years ago by an Ed Psych, that I'm really quite proud of myself for the coping strategies I've developed with little or no guidance, and that I'm starting to understand my own brain and the way it works to a degree that I find very useful. But having a proper diagnosis would help a lot. Not least with DSA. Well, we shall see how it goes.
- I am mastering the driving, at least around the local area. By 'mastering' I of course mean 'attempting to go five minutes down the road, ending up in the middle of the Congestion Zone going ever further west on a major road through central London, ringing The Girl (in Moscow), shrieking at her down the phone, and demanding directions back to where I wanted to go - since she, rather ironically, had an A to Z there with her and I didn't have one in the bloody car in the middle of bloody London'. But later in the day I went back in the same direction and successfully negotiated the Local One-Way System of Doom, getting to where I wanted to go and even arriving (almost) on time. And I haven't hit any lamp posts. Yet. So that's all good. Except that getting the wheelchair out of the car is not good for my back or shoulders. Hmm.
- I got a bag of nice new work clothes from Freecycle.
- I'm thinking about institutional disablism, and to what extent I'm willing to take a stand against it. Especially when no one would notice the very tiny stand that's all I can take. But that's hardly the point. The Principle Is The Thing.
- I chickened out of today's pain clinic appointment. This is good because I would have lost the plot entirely if I'd had to go alone. This is bad because the next appointment they could offer me is in the last week of July. I'm still laughing. It's all fodder to use against the GP in my demands for what I want. Go me, with the plotting and the being of evil. Even if only by accident.
This has been a possibly-quite-dull attempt to keep my posting levels up to *nearly* daily. Even if not quite.
TG minus three days
Sunday, February 24, 2008
This emotion has characterized my weekend. And why? Because of something important or serious? Hardly. That wouldn't be like me at all. No, it's because of things I alluded to in my last post. Words on a screen. Virtual communities. Places where I want to fit in, but can't - because of my views on everything from the Social Model* to non-disabled people**. Because of the ways I express myself (not always all that well, apparently). Because of who I am and how others react to that.
And then I went out for a pint of milk in an effort to calm down, and I went on one crutch because it's only across the road. And I'm waiting for the little man to change to green, because when you walk slowly it isn't all that safe to try to cross the road while traffic is rushing past. And a man, who has clearly just crawled out of the pub down the road, grabs me by the arm and says "Do you need any help, love?" And I recoil, and move away, and say "No, thank you," in a rather pissed-off tone, and then have to repeat that several times as the man seems determined to help me across the road (while traffic is still moving at quite some speed).
I need some new activities for a while, ones that don't involve messageboards or internet-based worlds. Although, saying that, I've just started posting at Disaboom. It seems to be more of a wide-ranging community than others where I have more, um, interesting debates (of the sort that don't do my little brain any good at all). It's very American in terminology and approach. But if I can get past that, it might be fun. Beyond that, though, I need to do other things. I just don't have the energy for much reading or socializing - especially with work (I'm back tomorrow, after a week off for half term. Blah to that). I've just discovered 4OD and BBC iPlayer. I think I'll retreat into cult TV for a few weeks. It's nice and safe, is TV. If I disagree with something, I can find something else to watch.
Now that's revolutionary.
*A good thing. Not without exception, but nearly.
**Not all evil oppressors from whom we should separate ourselves at all costs because we're vastly superior and/or need protection (or something).
TG minus five days
Friday, February 22, 2008
At school I was the silent one who didn't feel the need to speak. If I didn't open my mouth until lunchtime, whose business was that but mine? As a teenager, I didn't feel an overwhelming need for any kind of social life - my own company was generally more diverting than that of others my age, who tended to have odd obsessions with things like boys (that was always going to go well) and clothes (even better) and make-up (are we seeing a pattern yet?)... Sixth form was a bit better, when I was discovering interesting music that others appreciated too. I had several people I talked to at breaks and even occasionally on the phone. Always one at a time, of course - groups were never my thing.
At university I was a bit distracted by some quite serious mental health problems, which kept me from noticing that I was still very uncomfortable with people. I didn't know how to act in groups - they made me feel strange, and I couldn't be myself or say what I meant in them. I formed intense friendships that turned out to be largely one-sided. I was uncomfortable with my own oddness. At the time I put most of this down to my dodgy mental state. It was only later that I realised it was mainly just a continuation of weirdness that had always been there.
Internet forums were a delightful alternative to conventional socializing. I found two messageboards in particular, around this time, where I learnt that there were ways to communicate that didn't involve the discomfort and exhaustion of face-to-face discussion. It seemed almost possible to avoid the negative side of the group dynamic altogether in those particular online settings. No awkwardness, no shyness, no having to think on my feet when my brain doesn't work that way, lots of time to consider what I was saying, lots of ways to avoid discussions that weren't helpful or interesting or possible.
I don't know why my early experiences of internet messageboards were almost entirely positive, but they were - I can only remember a very small number of negative experiences related to these two posting boards. Maybe part of it was that the internet was still new as a setting for discourse. Whatever it was, though, I haven't been able to replicate that experience in an internet forum since. And I do keep trying.
Today I was again reminded that now, even on the internet, I can't escape the 'group fear' and the not-fitting-in. Group dynamics are everything, online or not. Strong personalities take charge. People hand out roles and fit themselves into boxes. Inconsistencies are everywhere. There is no justice. I don't speak the language, I don't know the rules, and I'm always falling behind everyone else. You could even call it 'disabling'. If you wanted to.
I'm hugely lucky that I have friends who understand that I mostly need one-to-one interaction, a girlfriend who thinks like me on this issue, and people in my life who don't mind my social quirks and oddities. But still. Sometimes I'd like to fit in *just* a little a bit better, even so.
TG minus seven days
Wednesday, February 20, 2008
This cold is making me really miserable and generally ruining a perfectly good week off. I was supposed to go to a Lenten 'alternative' Mass this evening, incredibly ancient liturgy with indie music, that I was *seriously* looking forward to. I was too unwell to go. This is irritating. I'm supposed to be more or less 'over' my post-viral illness, but every time I get a cold it knocks me out for a week. I would have preferred that week not to be over the half term break. Oh well. At least I had the' flu jab, otherwise I'd have been out for a month at some point this winter. That would have been tricky and quite dull.
My garden is developing. I got out there for about twenty minutes today - probably longer than I should have been outside, with a cold - and cleared a decent stretch of flowerbed. There's some kind of weedy bulb infecting the whole of my garden including the lawn, making it very hard to clear around the 'proper' plants. I may or may not attempt to get the lawnmower out later in the week. I wonder if it's possible to mow the lawn from a wheelchair.
If you'll excuse me, I have to get back to Torchwood and Ashes to Ashes. God bless the very-creative BBC and all who sail in her. (I swear I'll do my bit in return by writing something for them this week. Maybe.) Cheers, people.
TG minus one week and three days
Tuesday, February 19, 2008
I've never been very good at saying no. I'm eternally determined to please all of the people, all of the time, and preferably all at once. I particularly seem to want to make doctors happy. And it's not getting me good treatment (in either sense of the word).
I'm tired of being treated like a small, rather stupid child by doctors. It's time to learn how to say 'no' to them. Even though that's going to mean a - probably temporary - refusal to work with them.
I've been thinking about this a lot, since October especially. I get diagnosed with a genetic condition that no medical professional spotted despite dozens of opportunities in childhood, and maybe hundreds in the past two years. What's the response from doctors? Do they apologise for being wrong for all those years? For treating me like I was stupid and attention-seeking and crazy and wasting their time? For inflicting, indirectly, damage that is unlikely to be reversed now? No. It's still Try Harder - Do More - Keep Going - Push Through The Pain - Do More Damage - Look More Normal - Be More Acceptable - Play Our Games.
One thing I have firmly decided is that if they're going to continue to refuse me the help I ask for - from physio with local people who I trust, to any reasonable level of pain control - then I'm not turning my life upside down and shoving it in the toilet just to make them happy. I'm accepting the UCLH referral because they're apparently very good. But I'll walk away if they ask me to give up any more of my quality of life just so they can exchange my wheelchair for looking more 'normal' and being in a hell of a lot more pain. Which they don't want to help me to control anyway... (Anyone else ever feel like they're stuck in someone else's experimental hamster wheel?) Someone else is going to get used to hearing 'sorry, I can't help you' now. I wonder if they'll put up with it as quietly as I have up to now.
So, that text message ruined my day. I was going to sort out my garden and everything. Maybe tomorrow. I'm going to go and practice some driving now. Later, peeps.
Monday, February 18, 2008
I should perhaps be reading sociology, but there is no energy. Maybe tomorrow. Although I also want to sort out my garden and go to Argos. We shall see how the weather turns out.
This has been another 'My life is very dull. Why am I telling you this rubbish?' post. OK then.
Friday, February 15, 2008
Here is an e-mail I sent to my 'Access to Work' advisor this evening. Note that I attempted to be polite. I probably failed in a major way, though... E-mail is slightly edited to protect my identity (don't much care about anyone else's!), but very little has been taken out.
Dear Ms -,
Thank you for organizing the ergonomic and complex assessments for me, which have now resulted in some of my equipment arriving (I am still waiting for the desk chair - I'll let you know when it arrives). Some of the equipment is unsuitable and will have to be sent back, but some of of it is going to be very helpful. Many thanks.
I have been contacted by [name of assessor] at [name of company that carries out AtW's assessments]. He wanted to do an assessment of the physical premises at which I work. You may remember that I was asking urgently for such an assessment back in August, and that I was told repeatedly, both by yourself and [assessment company] that it was not possible. I have had to tell [assessor] that, since my contract ends in July - and he says that the assessment plus work on the buildings is likely to take longer than this - I cannot agree to this assessment at the moment, as it would not be of any use to me.
For your information, in relation to future jobs that I may have, [assessor] has said that I must have this assessment done at the earliest possible opportunity when I am in my next job. I would like to ask that this request is upheld, so that I need not wait so long again for the work premises assessment. The delays incurred because of confusion over whether or not such an assessment was necessary have caused me a lot of pain and stress, including having to have several weeks off work recently. I very much hope that I will now be able to keep going until July, but this is by no means certain, largely because of the building where I work, as well as the way that my employer asks me to move around a large, only partly-accessible campus so often during my working day.
Some more background to this is that I was asking for this assessment to be done, as a matter of urgency, between August and November (when I gave up asking, out of sheer exhaustion). Two of this company's assessors, who came to do IT and workstation assessments for me, recommended that the building assessment was done as soon as possible. Nothing happened. I continued to ask my AtW advisor for it, as the manager of the assessment company was getting nasty and practically accused me of being demanding, and still nothing happened. Then I went off work for six weeks. Now the manager of the assessment company is ringing, only six months too late, to ask if I'd like this assessment. Not only that, but he rather patronisingly told me today to get this assessment done "as quickly as possible in any future jobs you are in. Don't leave it this long in future." Oh, well, thank you so much for the advice. I only wish I'd thought of it myself. *headdesk*
Oh, and this fantastic equipment that arrived today, most of which is completely unsuitable? I've been waiting for it since November.
Yes, I forgot to post yesterday. It's been a *really* long week. Work is manic, I had to meet a scary official of the Church of England on Wednesday (the joys of being a PCC member), and I actually managed to drag myself to the pool on Thursday and do fourteen lengths through quite some pain. I want to get into a sport that I can do from my wheelchair. I just can't find one that doesn't involve hand-eye coordination or possible dislocations. I may go for something that could cause dislocations anyway. I haven't had one since I was a child, so my joints may have stiffened up just enough to avoid them now. And it would hardly be the end of the world anyway. Hmm. Must try to find out if any interesting classes are running locally and whether they'd let me do an activity from a wheelchair. I'll avoid discussing my diagnosis in too much detail. :-D
Edited to add: Yay! The Puddle is OK! And it's growing. Hurrah. The little things...
Wednesday, February 13, 2008
The first of these moments was on Ash Wednesday. I was in a shitty mood, and really not in the right mindset for repentance or solemnity. I was at the start of this sudden increase in pain I've been having recently, and it was making me cranky. I sat at the front, in front of the pew (as my church, accessible as it is, doesn't have a good space for wheelchairs). Another wheelchair user, in a big bulky powerchair, joined me up there. We had a conversation about the pros and cons of electric wheelchairs. I wasn't very up for the chat, though, as I was having a bit of an anti-crip day. If I remember correctly, I'd spent the day trying to find some way to talk to other disabled people about pain and impairment, and I felt judged for it. As I often do. Pain can be a taboo subject among some disabled activists - absolutely not all, but a few - since it really isn't very social model. I'd been feeling like I was trying to fit models, moulds and modes of being that I didn't fit into. Yet again, a square peg for a round hole. Not welcome in either the non-disabled or the disabled world. (All of this is my perception, and may not all be reality. That isn't the point, though. What's important is that I felt this way.) It had got so bad that I was really missing the times before the wheelchair when I could melt into crowds and be invisible - all I wanted was to be healthy and sitting at the back of the church, not the front. And then I felt guilty for that trechery against my community, too. Lovely vicious cycle, there.
Remember that you are dust, and to dust you shall return...
And then little things began to come together. I couldn't tell you exactly what it was. Part of it was the priest speaking movingly about a family member's death in his sermon. A big part of it was the Ash Wednesday liturgy with the ashes on the forehead that symbolise death, mortality, suffering, repentance, commitment. Some people might find the Ash Wednesday service quite depressing. Not when it's closer to your reality than anything else you've experienced in ages, though. I got the distinct sense that God was pointing out to me (with infinite, slighty amused patience - I'm a slow learner) that She has more than enough room for my pain (and my shitty mood, and my determination to ignore everyone around me, and my lack of gratitude for everything good in my life, and my pissed-off-ness at the bus driver who'd called me Wheelchair and his ridiculously steep bus ramp, and my pain again). Immense, incomprehensible Diversity. Bigger than any limited concept of inclusiveness that my little mind can conceive.
The second experience was in a Quaker meeting that I went to at the weekend. I've been to a couple of Quaker meetings before, and enjoyed them. They're meditative, reverent and personal settings for experiencing the mystery of God. I'm impressed by the holiness of the lifestyles of the Quakers that I meet - whose commitment to peace, to activism for and with the oppressed, to protecting the planet, to a God who accepts all people regardless of sexuality or other unimportant issues, puts my limited understanding of God to shame. Yet Quaker meetings are as far from my brand of worship as you can get. I find God in symbols and images, in ritual and liturgy, in communion and communal response. They do none of these things. God within each of us is all that they need. Though it's not my style, I admire that so much. We're all children of the same very Diverse God. It's amazing how wide a range of beliefs and styles and choices that Diversity can encompass.
The third incident was this evening. I won't say much about it, because I've gone on too long. But I was faced with someone whose views on God and His (this person's God is definitely a 'He') ways would have left me feeling guilty, pointless, unwelcome and discriminated against in the past. But I didn't need to persuade him (although of course I tried *grin*) of my reality, of the Diversity of my God. It was enough that God was quietly reminding me throughout to be grateful that I am starting to learn something of how massive, broad and all-encompassing She is, and that I have a church home where I am encouraged in this aspect of my journey of faith. I have a long way to go, but I'm so glad I didn't get 'turned off' God by those who tried to persuade me that there is only one way to understand God. I would really have missed out.
This Lent I celebrate my own welcome into the Diversity of God by trying to understand something of how utterly massive it is, and I repent of my stubborn inability to see Her in everything and everyone. Even bus drivers. Even faceless bureaucrats. Even irritating managers. Even those who don't make room for others and their individual forms of faith. Even Evangelicals. While I have the greatest respect for those who don't believe in God (and I love a good debate with them about faith and related matters), I'm so glad that my journey has taken me towards a greater understanding of the incomprehensible One, not away from it. Here's to the rest of that journey.
In mostly-unrelated news, can I just make an impassioned request to everyone who ever talks to me in person? I have been told FOUR TIMES today that I "look really well". There is no good answer to this one, people. I could depress you and say "Actually, I feel utterly appalling, can barely put one foot in front of the other, am in more pain than I've had to experience for about a year and don't know why, am generally really living up to the 'invisible' part of the phrase 'invisible condition', and please could you be so good as to call an ambulance if I pass out." Or I could smile and nod and say "Thanks", and feel absolutely awful about it. I usually do the latter. Don't make me. Cheers.