Friday, August 29, 2008

On being 'difficult'

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

Access Issues

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

A bird just flew straight into my window with a bit of a bang.

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

Social Model Doctors (no, really)

This morning I met a consultant who did a very good impression of being social model-influenced. He's a fan of *real* self-management of chronic conditions, had a surprising respect for all my coping techniques (including my wheelchair use), and at one point said the immortal and highly-quotable words "Although doctors have a role, there's no need to medicalize all disability"... Seriously. If I hadn't been so delighted, I might have passed out with the shock.

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

It's Not Easy Being Green And Disabled

On the disability-themed messageboard where I spend far too much of my time, we're discussing car use. A member of the board has put forward the theory that some disabled people claim they need a car for disability-related reasons, when actually they're using this as an excuse (because transport in their area is accessible, or similar) and actually just want their car for convenience sake.

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.