My dreamwidth reading page is buzzing with the extremely disturbing news that adverts such as this and this have recently been shown on livejournal.
They later said they would be pulling the ads - and in the process, admitted that they have no control over what adverts are shown on their site (see the first set of comments on that page).
I've downgraded my account from 'plus' to 'basic', as I don't want to end up unwittingly supporting this kind of thing.
Dreamwidth is seriously worth looking into as an alternative to livejournal, if you find this equally disturbing. I have a couple of invite codes, if anyone would like them - let me know.
Thank God and all Her angels that it's a bank holiday. I actually managed to park my car outside my house (by moving it at 8am before the undergrads arrived en masse to take over the world). I did not get a parking ticket, which proves my earlier point about no one bothering enough to come here. Hence my continuing lack of a designated spaced outside my house...
Now work. Really work. Hours and hours of it. I want to have this frakking draft completed by the end of the day. (Now there's an unrealistic goal for you.) More tea needed.
They later said they would be pulling the ads - and in the process, admitted that they have no control over what adverts are shown on their site (see the first set of comments on that page).
I've downgraded my account from 'plus' to 'basic', as I don't want to end up unwittingly supporting this kind of thing.
Dreamwidth is seriously worth looking into as an alternative to livejournal, if you find this equally disturbing. I have a couple of invite codes, if anyone would like them - let me know.
Thank God and all Her angels that it's a bank holiday. I actually managed to park my car outside my house (by moving it at 8am before the undergrads arrived en masse to take over the world). I did not get a parking ticket, which proves my earlier point about no one bothering enough to come here. Hence my continuing lack of a designated spaced outside my house...
Now work. Really work. Hours and hours of it. I want to have this frakking draft completed by the end of the day. (Now there's an unrealistic goal for you.) More tea needed.
- Location:At uni
- Mood:working
May 1st was Blogging Against Disablism day. Dozens of entries get written for this every year. I usually participate, but this year it was just too much to think about. Instead, here are my four favourites so far. I still have more to read, but these struck me as very powerful. Oppression is everywhere - it's there when we protest for our rights, when we go shopping, when we turn on the TV, and in every aspect of our lives, from the inconsequential to the life-altering. These posts explore those dimensions of disablist oppression. Read; think; remember.
More people need to know what happened to ADAPT at the White House last week, and about the parallel events involving the Autistic Self Advocacy Network's recent protest. If we shut our eyes to oppression, it continues. Autism - Change.org discusses the details.
On dreamwidth,
trouble writes about a Torchwood episode that I don't remember recongising as disability-themed, at least not to the extent that
trouble noticed. I need to watch it again and take note, because, as I said in a comment, if we don't stop and acknowledge this kind of mainstream media disablism, the oppression will only continue.
I adore Hoyden About Town's post on needing a seat. Access issues that don't involve ramps are so often overlooked. (And wheelchair users face these kinds of overlooked access issues too.)
Disablism is a daily part of many people's lives. Acknowledge it, challenge it, don't perpetutate it. Wheelie Catholic's post struck a very loud chord with me.
X-posted with my 'disability' blog.
More people need to know what happened to ADAPT at the White House last week, and about the parallel events involving the Autistic Self Advocacy Network's recent protest. If we shut our eyes to oppression, it continues. Autism - Change.org discusses the details.
On dreamwidth,
I adore Hoyden About Town's post on needing a seat. Access issues that don't involve ramps are so often overlooked. (And wheelchair users face these kinds of overlooked access issues too.)
Disablism is a daily part of many people's lives. Acknowledge it, challenge it, don't perpetutate it. Wheelie Catholic's post struck a very loud chord with me.
X-posted with my 'disability' blog.
- Location:London, until about 3pm today
- Mood:
determined - Music:R.E.M., 'Imitation of Life' -"That sugar cane that tasted good..."
Hurrah! I got a dreamwidth code. How lovely. I will be cross-posting with livejournal on most things, at least for the time being. (I need people to suggest journals I should read here. Cheers m'dears!)
I am doing nothing but writing essays. Well, I say writing. Mostly attempting to write for ten minutes, getting distracted for an hour, going back to it for ten minutes, rinse and repeat and repeat and repeat...
I am enjoying some TV in between though. (Spoilers follow, up to current US-aired episodes, so I shall spoiler-mark in case UKers stumble across this.)
*
*
*
House: FTW? He gives a kid treatment to which the aforementioned kid and his mother do not consent, that could change his identity entirely. An act of total, evil violation (in my humble little disability-rights-obsessed opinion). How does the show respond to this? It more-or-less condones it. Because the means justify the ends if a disabled person is 'cured', doesn't it? *headdesk*
How I Met Your Mother: Just adorable. Cobie is so very pregnant, and they appear to have given up trying to hide it, except for shared-joke-with-audience well-placed magazines etc. Cute.
Dollhouse: I am still desperate for this show to achieve the potential of which I occasionally see beautiful glimpses. The two previous to this week's were amazing. This week's was dull, dull, dull. Come on, Joss - get there faster...
***
I am trying to work out if the college that rejected me for a job discriminated against me, or not. I don't really care, but I rang and asked for feedback, and they (sounding terrified of a lawsuit) said it was mainly because I haven't taught A-levels in two years. I've had this year off for an MA and the previous year working in learning support because of disability-related illness.
What's funny is that this college is working towards the 'two ticks' accreditation. If they'd got it, they would have to guarantee me an interview. And then I'd been in with a really good chance of getting the job, because I can talk my way out of anything (and they admitted that my experience was great and my form was interesting). But, do I want to work for a college that is so concerned about my absence record that this comes first for them? No.
OK. Work. Really.
Edit: for the benefit of livejournal readers, I am seska_w_i_t on dreamwidth. Yes, I am going back to a *very* old handle. Retro, baby.
I am doing nothing but writing essays. Well, I say writing. Mostly attempting to write for ten minutes, getting distracted for an hour, going back to it for ten minutes, rinse and repeat and repeat and repeat...
I am enjoying some TV in between though. (Spoilers follow, up to current US-aired episodes, so I shall spoiler-mark in case UKers stumble across this.)
*
*
*
House: FTW? He gives a kid treatment to which the aforementioned kid and his mother do not consent, that could change his identity entirely. An act of total, evil violation (in my humble little disability-rights-obsessed opinion). How does the show respond to this? It more-or-less condones it. Because the means justify the ends if a disabled person is 'cured', doesn't it? *headdesk*
How I Met Your Mother: Just adorable. Cobie is so very pregnant, and they appear to have given up trying to hide it, except for shared-joke-with-audience well-placed magazines etc. Cute.
Dollhouse: I am still desperate for this show to achieve the potential of which I occasionally see beautiful glimpses. The two previous to this week's were amazing. This week's was dull, dull, dull. Come on, Joss - get there faster...
***
I am trying to work out if the college that rejected me for a job discriminated against me, or not. I don't really care, but I rang and asked for feedback, and they (sounding terrified of a lawsuit) said it was mainly because I haven't taught A-levels in two years. I've had this year off for an MA and the previous year working in learning support because of disability-related illness.
What's funny is that this college is working towards the 'two ticks' accreditation. If they'd got it, they would have to guarantee me an interview. And then I'd been in with a really good chance of getting the job, because I can talk my way out of anything (and they admitted that my experience was great and my form was interesting). But, do I want to work for a college that is so concerned about my absence record that this comes first for them? No.
OK. Work. Really.
Edit: for the benefit of livejournal readers, I am seska_w_i_t on dreamwidth. Yes, I am going back to a *very* old handle. Retro, baby.
- Location:Still in London
- Music:Killers, 'Human' (becuase TG keeps humming it)
Today I am happy because, in a fantastic enactment of highly appropriate metaphor, my Tom Shakespeare book threw itself off my desk in a suicidal fashion, taking about eight other things with it.
And because my essay is really boring me:
I think neither of these things would be a terrible way to be remembered.
I go off to watch The Big Bang Theory now. You can't not love it.
And because my essay is really boring me:
| Naomi successfully brought about world peace for 3 minutes and 17 seconds. | |
| ... afterward, Naomi decided to marry their imaginary friend. | |
| 'How will you be remembered in history books?' at QuizGalaxy.com |
I think neither of these things would be a terrible way to be remembered.
I go off to watch The Big Bang Theory now. You can't not love it.
- Mood:
amused
Today was the ThoughtBubble comics convention. TG is here. We went. I got some X-Men. She is currently researching a particular aspect of comics, so she got something relevant to that. Was all good, 'cept my battery ran out (it was a forty-five minute walk up and down hills to the venue) and we had to get a taxi home with a rather horrific driver who, when I asked whether he shouldn't be parked by a curb before getting out the wheelchair ramp, suggested that we'd have to try and it see and how it went (ever so surprisingly, it was too steep and I could have ended up in a pile on the ground under 20kg of wheelchair). And then he objected when I insisted that TG helped me down the ramp. Well, he wasn't exactly showing off his up-to-date safety training.
I have too much work. It's ridiculous. Still on the campaigns trail, though. I want the government to pay Winter Fuel Payments to disabled people. Some perfectly comfortably-off and non-disabled older people get them for no more achievement than reaching 65. Whereas I know young disabled people who end up in hospital every winter because they stop being able to turn on the heating because all their DLA is being paid to their councils to cover their care needs. And when we sign petitions about this? The government kindly reminds us how much DLA we receive. Great. Thanks. Have you ever tried being a disabled person and seeing if DLA covers all your costs? Have you ever tried being one of the thousands of disabled people who can't even get DLA because the system is so screwed up? In fact, have you ever experienced the abject poverty that, for a huge number of disabled people, is par for the course when you're a crip? No, you haven't, because you only ever talk to the 'charity model' organizations, like the non-disabled-run RNIB, so that you never have to talk to real disabled people. Wonderful.
Older people have some massive public support - they have a 'czar' for goodness sake (not that I think we'd particularly benefit from having one of those). Where do they get this ability to mobilize, while disabled people can't agree on anything because we're such a fragmented and disunited group? It's doing us no favours. I don't know what the solution to that is. I do know that we can't sit back and argue about our individual viewpoints on the social model when our brothers and sisters are dying from the cold. In an rich, post-industrialized Western nation. And no one knows or cares that it's happening...
I'm lucky. I'm in a minority among disabled people - I have enough money to live on. Even so, every year when I'm reminded of what it's like when the weather gets colder and the pain levels go up correspondingly, I get pissed off about this whole issue. Reading this government response to one of the petitions I signed was sort of the last straw. All I ever hear about this, on the Ouch messageboards and from other disabled people generally, is complaints. I don't know where our 'charities' and organizations are, and why they aren't campaigning harder - if at all - on this issue. So. If they won't do anything about it - what are WE going to do about it?
This has been an off-the-cuff disorganized rant. I will get my thoughts together into a blog post soon. In the meantime, I need ideas for mobilizing disabled people around this issue. Anyone who can offer any is welcome.
I have too much work. It's ridiculous. Still on the campaigns trail, though. I want the government to pay Winter Fuel Payments to disabled people. Some perfectly comfortably-off and non-disabled older people get them for no more achievement than reaching 65. Whereas I know young disabled people who end up in hospital every winter because they stop being able to turn on the heating because all their DLA is being paid to their councils to cover their care needs. And when we sign petitions about this? The government kindly reminds us how much DLA we receive. Great. Thanks. Have you ever tried being a disabled person and seeing if DLA covers all your costs? Have you ever tried being one of the thousands of disabled people who can't even get DLA because the system is so screwed up? In fact, have you ever experienced the abject poverty that, for a huge number of disabled people, is par for the course when you're a crip? No, you haven't, because you only ever talk to the 'charity model' organizations, like the non-disabled-run RNIB, so that you never have to talk to real disabled people. Wonderful.
Older people have some massive public support - they have a 'czar' for goodness sake (not that I think we'd particularly benefit from having one of those). Where do they get this ability to mobilize, while disabled people can't agree on anything because we're such a fragmented and disunited group? It's doing us no favours. I don't know what the solution to that is. I do know that we can't sit back and argue about our individual viewpoints on the social model when our brothers and sisters are dying from the cold. In an rich, post-industrialized Western nation. And no one knows or cares that it's happening...
I'm lucky. I'm in a minority among disabled people - I have enough money to live on. Even so, every year when I'm reminded of what it's like when the weather gets colder and the pain levels go up correspondingly, I get pissed off about this whole issue. Reading this government response to one of the petitions I signed was sort of the last straw. All I ever hear about this, on the Ouch messageboards and from other disabled people generally, is complaints. I don't know where our 'charities' and organizations are, and why they aren't campaigning harder - if at all - on this issue. So. If they won't do anything about it - what are WE going to do about it?
This has been an off-the-cuff disorganized rant. I will get my thoughts together into a blog post soon. In the meantime, I need ideas for mobilizing disabled people around this issue. Anyone who can offer any is welcome.
- Location:Leeds
- Mood:
angry
I've been missing livejournal, and its ability to let me post rubbish without having to be coherent (unlike my blog, which I feel should be properly written and all that). As a result, I may be back.
Yesterday: Anti BPP-demo, followed by a four-hour-long very intense board game at sci-fi soc games day (yes, they have activities every single day, which makes them the perfect society for those of us that get sudden urges to see people after locking ourselves in our room with our reading for a week). The demo was interesting. The police were truly appalling to the about two hundred, mostly mild-mannered, non-violent students who were demonstrating - except to me, to whom they were patronising and asked "Who are you with?" (the other demonstrators...) a lot, and kept telling me to get out of the crowd. Eventually I had to do just that, as it started to get a bit rowdy (fault of the police). Which was a shame. Hard to do a mainstream demo when you're in a wheelchair and can dislocate things. The BPP didn't turn up in the end (or they went elsewhere to do their very random protest against rap music), which we felt was a victory - they were clearly worried about the counter-protest. Not a bad result.
Then I went to the sci-fi soc games thing (not roleplaying games like D&D - mainly complicated board games like Risk - sort of a social with entertainment that you have to think about). We played Railroad Tycoon, which is one of the most complex games I've ever attempted. I lost horribly, but picked up some tips and tactics for my next attempt.
Now trying to decide whether to go to the weird random-sounding pro-LGBT technically-C-of-E-but-only-just church I've been told about, or just head to the local Quakers for some quiet. Might depend on how awake I am in an hour...
Yesterday: Anti BPP-demo, followed by a four-hour-long very intense board game at sci-fi soc games day (yes, they have activities every single day, which makes them the perfect society for those of us that get sudden urges to see people after locking ourselves in our room with our reading for a week). The demo was interesting. The police were truly appalling to the about two hundred, mostly mild-mannered, non-violent students who were demonstrating - except to me, to whom they were patronising and asked "Who are you with?" (the other demonstrators...) a lot, and kept telling me to get out of the crowd. Eventually I had to do just that, as it started to get a bit rowdy (fault of the police). Which was a shame. Hard to do a mainstream demo when you're in a wheelchair and can dislocate things. The BPP didn't turn up in the end (or they went elsewhere to do their very random protest against rap music), which we felt was a victory - they were clearly worried about the counter-protest. Not a bad result.
Then I went to the sci-fi soc games thing (not roleplaying games like D&D - mainly complicated board games like Risk - sort of a social with entertainment that you have to think about). We played Railroad Tycoon, which is one of the most complex games I've ever attempted. I lost horribly, but picked up some tips and tactics for my next attempt.
Now trying to decide whether to go to the weird random-sounding pro-LGBT technically-C-of-E-but-only-just church I've been told about, or just head to the local Quakers for some quiet. Might depend on how awake I am in an hour...
We're starting to laugh at this now (well, I am), but The Girl and I have just had one hell of a twenty-four hours...
We had somehow managed to fit in getting me to church, having lunch with a friend of hers and then going to see my baby niece (aww, Flo), even though neither of us was feeling very good - migraines abound in this house at the moment - if one of us doesn't have one, the other will. Anyway, we had been at my sister's (in Reading - an hour-and-a-half's drive away) for a while and were thinking about heading home, when TG started going funny colours. She suggested that we got out of there quick as she was having signs of a bad tummy bug. We set off, and made it five minutes down the road - where, fortunately, there was a hotel - before there was puking in the car park of a very nice establishment. We persuaded them to give us a room - they weren't keen on the idea, for some reason - which was fortunate, as she needed to be near a toilet for the next sixteen hours.
On account of not getting much sleep (although I got a lot more than TG did), I woke up at quarter to nine this morning and realised I really wasn't going to make it into work for 9.30, especially since TG was still very unwell, and I wasn't feeling great. (But work is a whole other issue that I may ask for advice on sometime. It is not going all that well. Hmph.) So I called in sick - third time in two months. I then rang NHS Direct, who gave us the excellent advice of giving TG some Migraleve, the anti-nausea ingredient allowing her to drive us home before she was bedridden again. Neither of us is likely to be leaving bed again today, which is a bit of a problem as I told my PA not to come (on account of how we weren't at home) - the flat looks like a bomb hit it, I doubt we're going to get any dinner, and it's taking all my energy just to make sure we both have enough water. If I could be bothered to explain things to my flatmate I'm sure she'd help, but I seriously don't feel up to talking, TG even less so. Tomorrow I have a care review from my social worker (ha ha - at least he'll see what things look like around here when it all goes very wrong), followed by a visit from the community physiotherapist who is assessing me for crutches etc (because I really can't walk anywhere at the moment. At least I can give them a solid reason *why* now. Might help). I may be too tired for either. We shall see.
Some better things that have gone on recently:
- At my Disability Living Allowance tribunal I was awarded higher rate care, and my higher rate mobility was confirmed. This was something of a shock which I am still getting over, but I'm awfully pleased. The back-pay will go a long way towards helping me to afford to do a course next year. (I'm thinking of doing an MA - yes, another one - in either Equality and Diversity or Disability Studies. In Leeds, where they do these things. It's something I've wanted to do since about 1997 but never got round to. And it's not like I'm interrupting a stunning career at the moment, or anything.)
- I have a fabulous new wheelchair. She is called Luna (we went through about seven Harry Potter names before settling on that). I can't use her completely independently, but because she's very good (and was quite expensive), I can get a lot further in her than I thought I'd be able to in a manual. The terrible evil that is Access to Work bought her for me. I'm still trying to decide if that makes up for the ongoing, utterly appalling levels of stress that organization is putting me through. I'm not sure.
Does anyone on my f-list know of anyone who might want to help me out next week while my PA is on holiday? (I, being deathly afraid of care agencies after the last time, have not bothered to register with one. Hmm.) There are eight hours of work available over as many days, and it's quite straightforward stuff like helping me with shopping. £10 an hour (negotiable if I get desperate. Heh).
Right, I'll stop rambling now.
We had somehow managed to fit in getting me to church, having lunch with a friend of hers and then going to see my baby niece (aww, Flo), even though neither of us was feeling very good - migraines abound in this house at the moment - if one of us doesn't have one, the other will. Anyway, we had been at my sister's (in Reading - an hour-and-a-half's drive away) for a while and were thinking about heading home, when TG started going funny colours. She suggested that we got out of there quick as she was having signs of a bad tummy bug. We set off, and made it five minutes down the road - where, fortunately, there was a hotel - before there was puking in the car park of a very nice establishment. We persuaded them to give us a room - they weren't keen on the idea, for some reason - which was fortunate, as she needed to be near a toilet for the next sixteen hours.
On account of not getting much sleep (although I got a lot more than TG did), I woke up at quarter to nine this morning and realised I really wasn't going to make it into work for 9.30, especially since TG was still very unwell, and I wasn't feeling great. (But work is a whole other issue that I may ask for advice on sometime. It is not going all that well. Hmph.) So I called in sick - third time in two months. I then rang NHS Direct, who gave us the excellent advice of giving TG some Migraleve, the anti-nausea ingredient allowing her to drive us home before she was bedridden again. Neither of us is likely to be leaving bed again today, which is a bit of a problem as I told my PA not to come (on account of how we weren't at home) - the flat looks like a bomb hit it, I doubt we're going to get any dinner, and it's taking all my energy just to make sure we both have enough water. If I could be bothered to explain things to my flatmate I'm sure she'd help, but I seriously don't feel up to talking, TG even less so. Tomorrow I have a care review from my social worker (ha ha - at least he'll see what things look like around here when it all goes very wrong), followed by a visit from the community physiotherapist who is assessing me for crutches etc (because I really can't walk anywhere at the moment. At least I can give them a solid reason *why* now. Might help). I may be too tired for either. We shall see.
Some better things that have gone on recently:
- At my Disability Living Allowance tribunal I was awarded higher rate care, and my higher rate mobility was confirmed. This was something of a shock which I am still getting over, but I'm awfully pleased. The back-pay will go a long way towards helping me to afford to do a course next year. (I'm thinking of doing an MA - yes, another one - in either Equality and Diversity or Disability Studies. In Leeds, where they do these things. It's something I've wanted to do since about 1997 but never got round to. And it's not like I'm interrupting a stunning career at the moment, or anything.)
- I have a fabulous new wheelchair. She is called Luna (we went through about seven Harry Potter names before settling on that). I can't use her completely independently, but because she's very good (and was quite expensive), I can get a lot further in her than I thought I'd be able to in a manual. The terrible evil that is Access to Work bought her for me. I'm still trying to decide if that makes up for the ongoing, utterly appalling levels of stress that organization is putting me through. I'm not sure.
Does anyone on my f-list know of anyone who might want to help me out next week while my PA is on holiday? (I, being deathly afraid of care agencies after the last time, have not bothered to register with one. Hmm.) There are eight hours of work available over as many days, and it's quite straightforward stuff like helping me with shopping. £10 an hour (negotiable if I get desperate. Heh).
Right, I'll stop rambling now.
- Mood:
ugh.
Of course, now that I'm off the bus and it's two hours later, I can think of many ways to respond to the woman who had a loud, very rude argument with me (mostly *at* me) because I asked her to move her baby's buggy so I could put my wheelchair in the wheelchair space (there's a reason they don't call it the buggy space - I can't think what that reason might be). This is about the third time this has happened to me this week, and I hardly ever go on buses in my chair (I wonder why not). I was particularly amused by her "Where would you like me to put it?" question. I should have asked her where she'd like me to put my wheelchair. (Silly me, of course, I can put it on the luggage shelf and go about my business.) I should also have told her that a) I'd been volunteering in a school where I'd been helping dyslexic seven-year-olds with their reading (although I'm sure her shopping trip in Hampstead was equally important), b) that this bus was my absolute only way home (as much as I'd like to take my chair on the tube, there's those pesky 117 stairs down for me to meet a squishy fate at the end of), and c) goodness me, do those notices say GIVE UP THIS AREA FOR A WHEELCHAIR USER? I think they just might. You see, some of us can read signs. It's a skill some nice volunteer teaching assistant would have taught you in school if someone like you hadn't kept her from getting on her bus.
I can't believe she actually argued me off the bus. And that the driver took no notice when I asked for his help. Fuckers. Still, we've complained to the bus company, and told that they will be taking the complaint very seriously and that a line manager will get back to us once they've worked out who the idiot driver was. So that's something.
*breathe*
In other news, I am getting very involved with my garden. I havetransformed slightly altered it, with the help of my elderly garden-competition-winning neighbours (and occasional assistance from The Girl and The P.A.), so that it now looks a bit less like something that came straight off the set of Lost. Some of my plants may be dying, but as a complete beginner I feel that I would have failed to live up to expectations if I didn't kill a few flowers. Photos to follow when the sun comes out again. If it ever does.
I can't believe she actually argued me off the bus. And that the driver took no notice when I asked for his help. Fuckers. Still, we've complained to the bus company, and told that they will be taking the complaint very seriously and that a line manager will get back to us once they've worked out who the idiot driver was. So that's something.
*breathe*
In other news, I am getting very involved with my garden. I have
- Mood:
enraged
There is an appeal up at the Great London Trek. We have made over £600 for the Fibromyalgia Association UK. This is fab. We want more money. Donate donate donate!
Thank you. :)
The campaign is beginning to go well. We have potential (small-scale) media interest. But with just over two weeks to go, we need to step things up a gear. Anyone who can tell anyone about the Trek and why Sharon is doing it (see the website for details), please do so! Mention it on posting boards, e-mail your friends, comment here to ask me for a sponsor form, get all your friends to sponsor us, or sponsor us yourself! If you don't want to use the website to donate, you can e-mail Sharon at gavroche2000@hotmail.com and she'll arrange for you to donate any amount that you choose.
Remember: FMA-UK is a tiny organization. They are a very small voice challenging the bizarre state of affairs in this country, where the medical profession here is being very slow to accept that this condition is real and causes severe impairment. They need support in this effort.
We are also campaigning for better access to London's streets and amenities, something that is starting to get us noticed a very little bit. More updates on that to follow...
Donate at the website now! Tell everyone you know! Thank you!
Thank you. :)
The campaign is beginning to go well. We have potential (small-scale) media interest. But with just over two weeks to go, we need to step things up a gear. Anyone who can tell anyone about the Trek and why Sharon is doing it (see the website for details), please do so! Mention it on posting boards, e-mail your friends, comment here to ask me for a sponsor form, get all your friends to sponsor us, or sponsor us yourself! If you don't want to use the website to donate, you can e-mail Sharon at gavroche2000@hotmail.com and she'll arrange for you to donate any amount that you choose.
Remember: FMA-UK is a tiny organization. They are a very small voice challenging the bizarre state of affairs in this country, where the medical profession here is being very slow to accept that this condition is real and causes severe impairment. They need support in this effort.
We are also campaigning for better access to London's streets and amenities, something that is starting to get us noticed a very little bit. More updates on that to follow...
Donate at the website now! Tell everyone you know! Thank you!
In today's exciting instalment of The Blog, I discuss jumping through hoops to get the support I need, from DLA to social services. It's fascinating. No, really...
It's not *quite* fully up-and-running yet, but since it should be this afternoon or early tomorrow, I'll let you guys know before I tell the rest of the world: http://www.greatlondontrek.com ... The Girl's sponsored walk gets off the ground. Go and see. :)
It's not *quite* fully up-and-running yet, but since it should be this afternoon or early tomorrow, I'll let you guys know before I tell the rest of the world: http://www.greatlondontrek.com ... The Girl's sponsored walk gets off the ground. Go and see. :)
- Mood:
forgot to put the heating on
It's been made abundantly clear to me that there are people 'out there' who think I focus overly on the negative, or something similar, and who do not want to read my rants about pain, symptoms and disability.
In response to this, a public post to make something VERY clear.
If you 'friend' me, you accept my posts about MY life. This journal is for no one's benefit except my own. I will not censor, sanitize or play nice, nor will I pretend life is anything other than it is. Things have never been a bundle of laughs for me. I don't pretend that they are. If you don't like this, go the fuck away.
Furthermore, if your attitudes are not helpful for me - i.e. if you express sentiments that I believe compromise my right to equality, understanding or acceptance in society - then I can choose not to read your journal. Your choices do not have to be my choices.
Comments have been screened, so say what you want. Tell me to take you off my friends list, if you'd like. Or take me off yours. As for me, I will continue to be myself and to be as honest as I always was. My life has been turned upside down in the last few months, and is currently fairly close to unbearably difficult. Under the circumstances, I think I'm being insanely positive. But that's just my view. If you'd like to pretend that none of this is the case, I can continue chatting to you on MSN or over e-mail about rubbish - I just won't include you in my discussions about real life. Let me know if you'd like to be taken off my friends list.
All posts after this will be friends-only.
And the fight for equality goes on.
Blessed are the poor in spirit, for theirs is the kingdom of heaven. - Matthew 5:3
If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. - 1 Corinthians 12:26
He who walks with the wise grows wise, but a companion of fools suffers harm. - Proverbs 13:20
Why are you at my side?
How can I be any use to you now?
Give me a chance and I'll let you see how
Nothing has changed
Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess how I'm feeling
Frightened you'll slip away...
from 'Evita'
In response to this, a public post to make something VERY clear.
If you 'friend' me, you accept my posts about MY life. This journal is for no one's benefit except my own. I will not censor, sanitize or play nice, nor will I pretend life is anything other than it is. Things have never been a bundle of laughs for me. I don't pretend that they are. If you don't like this, go the fuck away.
Furthermore, if your attitudes are not helpful for me - i.e. if you express sentiments that I believe compromise my right to equality, understanding or acceptance in society - then I can choose not to read your journal. Your choices do not have to be my choices.
Comments have been screened, so say what you want. Tell me to take you off my friends list, if you'd like. Or take me off yours. As for me, I will continue to be myself and to be as honest as I always was. My life has been turned upside down in the last few months, and is currently fairly close to unbearably difficult. Under the circumstances, I think I'm being insanely positive. But that's just my view. If you'd like to pretend that none of this is the case, I can continue chatting to you on MSN or over e-mail about rubbish - I just won't include you in my discussions about real life. Let me know if you'd like to be taken off my friends list.
All posts after this will be friends-only.
And the fight for equality goes on.
Blessed are the poor in spirit, for theirs is the kingdom of heaven. - Matthew 5:3
If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. - 1 Corinthians 12:26
He who walks with the wise grows wise, but a companion of fools suffers harm. - Proverbs 13:20
Why are you at my side?
How can I be any use to you now?
Give me a chance and I'll let you see how
Nothing has changed
Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess how I'm feeling
Frightened you'll slip away...
from 'Evita'
- Mood:
enraged
So now I don't know whether I should go out with my mum tonight. I told her I would, as she has no one else to go out with, but I wish I hadn't. I can't deal with it, and I have so much work to do. Hmm.
I want to watch the Buffy episodes that my friend brought over for me, but I feel like I need to work first and see them as a reward if I finish everything I've got to do (which I'm never going to). Where am I going to fit five hours' worth of epsiodes into this week? I desperately want to see them before I go back, as I can only watch them on my dad's computer because mine doesn't have enough memory to load the software. Hmmm...
I'm having a 'why am I putting myself through this?' day. There is no way I can do enough work to teach decent lessons in the first part of this term. I don't know what I'm doing. Why am I not training for a nice quiet job where I don't feel this stressed every day???
I'm going to read Antony and Cleo in the bath and try to relax.
I want to watch the Buffy episodes that my friend brought over for me, but I feel like I need to work first and see them as a reward if I finish everything I've got to do (which I'm never going to). Where am I going to fit five hours' worth of epsiodes into this week? I desperately want to see them before I go back, as I can only watch them on my dad's computer because mine doesn't have enough memory to load the software. Hmmm...
I'm having a 'why am I putting myself through this?' day. There is no way I can do enough work to teach decent lessons in the first part of this term. I don't know what I'm doing. Why am I not training for a nice quiet job where I don't feel this stressed every day???
I'm going to read Antony and Cleo in the bath and try to relax.
- Mood:tearful
- Music:Tori, Scarlet's Walk
New 'article' up at Phrenetic. I was bored and wanted to lighten up about it. Plus, I'm seeing the positive side of things. Yay me. :-D
More articles to follow - I'm thinking about disclosure of disability and social anxiety disorder. Just need to get my thoughts in order and into html.
More articles to follow - I'm thinking about disclosure of disability and social anxiety disorder. Just need to get my thoughts in order and into html.
- Mood:accomplished
I like the angels in the Christmas story. I think it's fantastic that a massive gang of heavenly beings was there to proclaim the birth of Christ. In honour of which:
Angels from the realms of glory,
Wing your flight o’er all the earth;
Ye who sang creation’s story
Now proclaim Messiah’s birth.
Come and worship, come and worship
Worship Christ, the newborn King.
Sages, leave your contemplations,
Brighter visions beam afar;
Seek the great Desire of nations;
Ye have seen His natal star.
Come and worship, come and worship
Worship Christ, the newborn King.
Ended up going to church on my own last night. I'm so glad I did. It was so contemplative and peaceful; lots of things became clear to me, particularly when we sang that carol. God's in charge. Peace on earth; goodwill toward men... It's not so much a promise as a command.
Have a brilliant Christmas, everyone. Special love and prayers to people who are finding Christmas difficult this year. I'm off to eat.
Angels from the realms of glory,
Wing your flight o’er all the earth;
Ye who sang creation’s story
Now proclaim Messiah’s birth.
Come and worship, come and worship
Worship Christ, the newborn King.
Sages, leave your contemplations,
Brighter visions beam afar;
Seek the great Desire of nations;
Ye have seen His natal star.
Come and worship, come and worship
Worship Christ, the newborn King.
Ended up going to church on my own last night. I'm so glad I did. It was so contemplative and peaceful; lots of things became clear to me, particularly when we sang that carol. God's in charge. Peace on earth; goodwill toward men... It's not so much a promise as a command.
Have a brilliant Christmas, everyone. Special love and prayers to people who are finding Christmas difficult this year. I'm off to eat.
- Mood:
thoughtful - Music:My dad's Christmas CD - it's a bit cheerful for me.
My dad is so funny. He tried to make me watch 'White Christmas' and I refused and came out here to play until something better is on. We're going to church at 11.15, only a) he's almost completely lost his voice (it's going to be a quiet Christmas) and b) he keeps forgetting - he just asked me if I'd mind if he changed into his robe. He's a strange man. I reminded him, and suggested that he might not be quite up to joining me, but he's insisting on coming along. That's dedication, and from a non-Christian and everything. :-)
We went to see my grandmother this afternoon. She lives in a care home, but she's fairly sprightly - she just has long-term mental health problems that mean she can't look after herself. She was on form tonight. She was in the middle of saying something when she moved seamlessly into instructing us not to look at "that man" who was walking along the corridor outside the room we were in. Apparently we weren't to attract his attention because he's deathly boring and she didn't want him to start talking to us. Brilliant. She's so prejudiced, though. I suppose it's an age thing. "I admire Elton John as a musician, but I don't like his type." "His type?" "Homosexuals. Though admittedly they're not all bad. Your grandfather and I once stayed in a hotel which was run by two of those, and one had impeccable manners." Hee! Then she quoted Leviticus, upon which my sister and I started quoting other parts of Leviticus which ban leather shoes and wearing cotton next to the skin. Plus the bit where we're commanded to go outside the camp and dig a hole if we want to ablute. My sister and I particularly like that one. It made her change the subject, at least. :-D
Oh, I do talk a lot of crap. Sorry. I'll end by quoting someone with actual writing talent, then I'll go away. Happy Christmas to anyone who celebrates today.
"December 24th, Nine PM
Eastern Standard Time
From here on in
I shoot without a script
See if anything comes of it
Instead of my old shit..."
"Revolution, justice, screaming for solutions,
Forcing changes, risk, and danger
Making noise and making pleas..."
"The riot continues
The Christmas tree goes up in flames
The snow dances..."
-Rent
We went to see my grandmother this afternoon. She lives in a care home, but she's fairly sprightly - she just has long-term mental health problems that mean she can't look after herself. She was on form tonight. She was in the middle of saying something when she moved seamlessly into instructing us not to look at "that man" who was walking along the corridor outside the room we were in. Apparently we weren't to attract his attention because he's deathly boring and she didn't want him to start talking to us. Brilliant. She's so prejudiced, though. I suppose it's an age thing. "I admire Elton John as a musician, but I don't like his type." "His type?" "Homosexuals. Though admittedly they're not all bad. Your grandfather and I once stayed in a hotel which was run by two of those, and one had impeccable manners." Hee! Then she quoted Leviticus, upon which my sister and I started quoting other parts of Leviticus which ban leather shoes and wearing cotton next to the skin. Plus the bit where we're commanded to go outside the camp and dig a hole if we want to ablute. My sister and I particularly like that one. It made her change the subject, at least. :-D
Oh, I do talk a lot of crap. Sorry. I'll end by quoting someone with actual writing talent, then I'll go away. Happy Christmas to anyone who celebrates today.
"December 24th, Nine PM
Eastern Standard Time
From here on in
I shoot without a script
See if anything comes of it
Instead of my old shit..."
"Revolution, justice, screaming for solutions,
Forcing changes, risk, and danger
Making noise and making pleas..."
"The riot continues
The Christmas tree goes up in flames
The snow dances..."
-Rent
- Mood:
chipper
What has been going on with my LJ entries? Every time I edit, it posts it as another entry. (Or possibly I've been pressing the back button instead of 'edit entry'.) Hmm.
Today is write-up-lesson-evaluations day. My computer lost most of my lesson evaluations from after half term, so I'm trying to remember what I taught back in October. Hee.
I'm not sure, but I think I'm going to have to take a break from the Buffy board where I post. It's nothing against the board, which I adore and which feels like home, but I've felt insulted there one too many times (by people who probably mean nothing nasty at all) and it's more than I can deal with when I'm busy struggling through work and family issues. As for the Lord of the Rings thing - I don't know about many things, but I know about literature. I was really insulted by the suggestion that I don't. The fact that I can't read the damn book doesn't make me illiterate. I know that reaction was all about my insecurity, but... I don't know. Maybe I'll just post there a bit less, for the time being. I'd miss doing a Christmas Day post. I *think* this'll be my third Christmas as a Bronzer. Weird. :-)
In other news, I wrapped my presents last night and had the horrible revelation that I'd only bought one book for my friend whom I find a bit difficult. I don't want her to think that I wasn't thinking about her. It's a book that I really think she'll enjoy. It just looks small and unimaginative compared to the two interesting-looking boxes she gave me. I'm crap at buying presents - books and CDs, that's all I can ever think of to give people. Oh well.
Oh great... this is cheerful. Again. Why do I always get the depressing answers to quizzes? Why?!? *cough*

Which Sesame Street Muppet's Dark Secret Are You?
brought to you by Quizilla
This is slightly better. Not a surprise.

The Ultimate *Which Harry Potter Character are You?* Quiz
brought to you by Quizilla
Sending a Christmas Eve {{hug}} and prayer to
kibarika and
lawgeekgurl, as I think they need it the most today - and because they're special people. Love to you both.
Today is write-up-lesson-evaluations day. My computer lost most of my lesson evaluations from after half term, so I'm trying to remember what I taught back in October. Hee.
I'm not sure, but I think I'm going to have to take a break from the Buffy board where I post. It's nothing against the board, which I adore and which feels like home, but I've felt insulted there one too many times (by people who probably mean nothing nasty at all) and it's more than I can deal with when I'm busy struggling through work and family issues. As for the Lord of the Rings thing - I don't know about many things, but I know about literature. I was really insulted by the suggestion that I don't. The fact that I can't read the damn book doesn't make me illiterate. I know that reaction was all about my insecurity, but... I don't know. Maybe I'll just post there a bit less, for the time being. I'd miss doing a Christmas Day post. I *think* this'll be my third Christmas as a Bronzer. Weird. :-)
In other news, I wrapped my presents last night and had the horrible revelation that I'd only bought one book for my friend whom I find a bit difficult. I don't want her to think that I wasn't thinking about her. It's a book that I really think she'll enjoy. It just looks small and unimaginative compared to the two interesting-looking boxes she gave me. I'm crap at buying presents - books and CDs, that's all I can ever think of to give people. Oh well.
Oh great... this is cheerful. Again. Why do I always get the depressing answers to quizzes? Why?!? *cough*

Which Sesame Street Muppet's Dark Secret Are You?
brought to you by Quizilla
This is slightly better. Not a surprise.

The Ultimate *Which Harry Potter Character are You?* Quiz
brought to you by Quizilla
Sending a Christmas Eve {{hug}} and prayer to
- Mood:
anxious - Music:There are too many Christmas adverts on TV today
It's the middle of the morning and I'm sitting on the sofa in my PJs doing course reading. I'm not going anywhere til this afternoon, anyway. On the telly I have an exciting choice between a 'documentary' about Blue and an S-Club concert. *yawn* All helps me to work.
I had freaky dreams again. Can't ever remember them except for just after I wake up - I should keep a notebook by the bed and write them down, or something.
Right, work then wrapping paper shopping... I'll probably get dressed prior to that.
Life lines and suicide crimes - he found me in a state...
I've been cruisin', a good invention
But in some ways I don't think it gets any easier
- Tori
I had freaky dreams again. Can't ever remember them except for just after I wake up - I should keep a notebook by the bed and write them down, or something.
Right, work then wrapping paper shopping... I'll probably get dressed prior to that.
Life lines and suicide crimes - he found me in a state...
I've been cruisin', a good invention
But in some ways I don't think it gets any easier
- Tori
- Mood:
blah - Music:'Mrs Jesus' - Tori Amos
I'm drinking green tea. It's wonderful.
I spent £20 on food at the supermarket today, yet I don't actually seem to have any - except for a bit of salad and pasta. That's just odd. I think I'd better get my dad to feed me for the next few days.
So, I went to the church panto rehearsal and the 'carols by candlelight' service. I have quite a big part in the panto - I wasn't expecting that. I'm a belligerent tree. (It's a long story.) I don't think I'll be very funny, but never mind. The carol service was OK, if a bit boring... My 'home church' doesn't do traditional very well. I missed the contemplative atmosphere of my Baptist church in London. Ah well. It was great to see some friends. I feel guilty for not having done any work today, by I'll try and do some before I go to bed. I'm working on using my evening hours effectively for the next two weeks, since I don't have to get up early - I work best late at night. Plus I need to be used to staying up til midnight by Tuesday, as midnight communion on Christmas Eve usually sees me falling asleep at the altar, which is no good at all.
Jack Dee's on a television drama playing a non-comic character. This is confusing for me.
I spent £20 on food at the supermarket today, yet I don't actually seem to have any - except for a bit of salad and pasta. That's just odd. I think I'd better get my dad to feed me for the next few days.
So, I went to the church panto rehearsal and the 'carols by candlelight' service. I have quite a big part in the panto - I wasn't expecting that. I'm a belligerent tree. (It's a long story.) I don't think I'll be very funny, but never mind. The carol service was OK, if a bit boring... My 'home church' doesn't do traditional very well. I missed the contemplative atmosphere of my Baptist church in London. Ah well. It was great to see some friends. I feel guilty for not having done any work today, by I'll try and do some before I go to bed. I'm working on using my evening hours effectively for the next two weeks, since I don't have to get up early - I work best late at night. Plus I need to be used to staying up til midnight by Tuesday, as midnight communion on Christmas Eve usually sees me falling asleep at the altar, which is no good at all.
Jack Dee's on a television drama playing a non-comic character. This is confusing for me.
- Mood:
guilty
I think my laptop's dying. It's been doing some very odd things including losing files, crashing at regular intervals and presenting me with strange error messages. It's ancient and basic, but I was hoping it would last me the rest of the university year. I'm not sure now. Am hoping I can get some Disabled Students' Allowance towards a new one. If I can't, I wonder what I'll do - I can't work without a computer. It's not exactly a luxury. Hmm.
Dad took my sister and me out for breakfast. That was really nice :) I'm shortly off to practice being a tree in the church panto rehearsal. Need to fit in some work today, too...
My sister and I have concluded that we're ignoring Christmas this year. Not in a cynical way - we'll try to be cheerful on the day to make our parents happy, and I do enjoy giving presents and going to church at Christmas. (Just as long as I can get past the commercialism and the other things I find more difficult.) But since we're not particularly excited about the time of year itself, at the moment anyway, then we're trying not to get worked up about it. Which is fine by me. I might look for alternative ways to celebrate, to spend time with God... if I'm not too snowed under with work to do anything else at all.
I might be going to see 'Rent' quite soon!! Now that's exciting.
"How do you leave the past behind
When it keeps finding ways to get to your heart?
It reaches way down deep and tears you inside out
Till you're torn apart"
- Rent
Dad took my sister and me out for breakfast. That was really nice :) I'm shortly off to practice being a tree in the church panto rehearsal. Need to fit in some work today, too...
My sister and I have concluded that we're ignoring Christmas this year. Not in a cynical way - we'll try to be cheerful on the day to make our parents happy, and I do enjoy giving presents and going to church at Christmas. (Just as long as I can get past the commercialism and the other things I find more difficult.) But since we're not particularly excited about the time of year itself, at the moment anyway, then we're trying not to get worked up about it. Which is fine by me. I might look for alternative ways to celebrate, to spend time with God... if I'm not too snowed under with work to do anything else at all.
I might be going to see 'Rent' quite soon!! Now that's exciting.
"How do you leave the past behind
When it keeps finding ways to get to your heart?
It reaches way down deep and tears you inside out
Till you're torn apart"
- Rent
- Mood:
bored
That's not even sarcasm - I'm pleased to be home. It's so nice to be in a flat with a sofa and a telly, instead of in one room with no light. Granted, I'll be sick of trees and desperate to get back to London in about three days... but, you know. They'll be nice days. :)
I brought SO many books with me - I don't know when I'm planning to attempt to read them all. Getting them all on and off the train was a bit of a nightmare. So much to do... People who think teachers have it easy because they have long holidays know nothing about how much work we actually have to do. Having spent the last three months working from 9 in the morning til 11 at night, I'll now be spending my Christmas holiday working all day, every day (except Christmas day, which I demand to have off because everyone else does). Hmm... It is worth it. It's just frustrating sometimes, that's all.
I must go and buy some food. There's nothing in the cupboards except for a pint of UHT milk and a tube of tomato puree. But my sister is cooking dinner for me! So that'll be nice.
I brought SO many books with me - I don't know when I'm planning to attempt to read them all. Getting them all on and off the train was a bit of a nightmare. So much to do... People who think teachers have it easy because they have long holidays know nothing about how much work we actually have to do. Having spent the last three months working from 9 in the morning til 11 at night, I'll now be spending my Christmas holiday working all day, every day (except Christmas day, which I demand to have off because everyone else does). Hmm... It is worth it. It's just frustrating sometimes, that's all.
I must go and buy some food. There's nothing in the cupboards except for a pint of UHT milk and a tube of tomato puree. But my sister is cooking dinner for me! So that'll be nice.
- Mood:
tired - Music:Radio 4 - some programme about films
