Thursday, November 12, 2009
I have NO RESULTS. I have spent six effing months on research for a dissertation, and because of the physiotherapy teaching establishment's idiocy, obstinacy, protected privilege, and unwillingness to engage with disabled people and disability researchers, I have no results.
My very sweet tutor says it's all going to be OK, and that I have other things to talk about, including sociologically significant reasons for having no results. But I can't avoid the sinking feeling that says I'm going to get a 65 on this dissertation and miss out on my distinction (for which I need at least a 68), and not be able to get funding for a PhD, and generally end up with no sodding idea what I'm going to do with my life next.
Over on my lovely fandom posting board, we are talking etymology, words that offend everyone from feminists to disabled people, reclaiming terminology when you're in a minority group, and all that good stuff. Awesome. I love how disability-aware a lot of them are, on that random posting board that has nothing to do with disability at all. It gives me hope.
Hope: something this blog is sometimes lacking. Let us celebrate. More Pinot Grigio!
Wednesday, November 11, 2009
See that pot? That's not a pot of tea. That, m'dears, is what you get in Richoux - the world's snobbiest cafe - when you order a pot of coffee. The Girl paid several £s for that pot. She was expecting a cafetiere. She was, to say the least, not impressed. As you might be able to tell from the picture.
Talking of cafes, I've been trying to find out why the brand new Costa on Chalk Farm Road has a sodding enormous step at the entrance. This is a blatant breach of the DDA. (The Costa customer service department responded to my e-mail asking which branch I'm talking about, when I had given the exact address - which rather demonstrates how stupid they are.) It's one thing when a small, independent shop can't afford to ramp its entrance. It's quite another when a massive multi-national, with six branches in every town, refits a brand new cafe and builds a new step entirely from scratch. Wankers. If they have no answer to my complaint, I might ask Camden Council exactly why they keep giving planning permission to shops and cafes that stomp all over actual and/or potential disabled customers in their blatant disregard for the law.
This has been the Rant of the Day. You may now return to your regularly scheduled programming.
Tuesday, November 10, 2009
We're going with 'Susan' for the walker's name. We realised it covers three fandoms - with Ivanova, Sto-Helit and Pevensie. I look forward to giving a different answer every time someone asks why.
Today in my evening class, we were taught about feminism - very badly. I tried not to laugh or correct the teacher. I should have realised that taking a sociology class, even if not in my area of expertise, was inevitably going to involve occasional sniggering behind my laptop. I'd get angry, only I just don't care enough about the class, occasional fun though it is. (I do wish its essay deadline wasn't the day after my dissertation deadline, though. Guess which one will get prioritised? Clue: one of them will get me an MA and one won't...)
Monday, November 09, 2009
It's a good thing NaBloPoMo doesn't specify either post length or, well, quality.
Better stuff tomorrow, I promise...
Sunday, November 08, 2009
Suffice it to say that with the number, weight and intensity of comments, you'd have been forgiven for thinking I'd walked in with a new baby.
(Although that would have been a lot less supportive for my knees.)
Have been discussing names for aforementioned walker on fandom forums. Continuing the sci-fi/fantasy theme (following Marvin the powerchair and Luna the manual), and given that the walker is geeky and a bit strange*, I'm thinking along the lines of Random or Susan. Messageboard posters are currently favouring Velma, but I am not a Scooby Doo fan so that's not happening.
I would say again that this wasn't the best month to choose to post every day, but I think you're getting the idea.
*You find these things out about mobility aids quite quickly.
Saturday, November 07, 2009
The scene not far from my road which I encountered on returning from Camden this morning. I'd been working in a cafe for a couple of hours. Heading back home, I found the road blocked off in all directions, including the dropped kerbs, with no temporary ramps and no warning signs.
The workmen acted like I was entirely bonkers for suggesting that they might have wanted to make their roadworks accessible to disabled pedestrians. "But we're only going to be here for an hour or so."
Then one of the workmen instead on 'helping' me up and down the inaccessible kerbs, mainly by repeating "Keep going... keep going... keep going..." about six times. Because I can't push my wheelchair without such verbal encouragement, obviously.
FAIL, Camden Council.
Not that we expect any better than that from you, really.
Friday, November 06, 2009
On the slightly more exciting side of things, I have a walker. This is not because I have given in to society's obsession with staying upright - Mike Oliver sums up how I feel about that, in his fantastic piece What's So Wonderful About Walking? But I'm just not that great at life in a wheelchair. I tip over. I fall out. I have to get out of the chair to do kerbs. I need powered wheels to get up hills. I'm in massive pain in my shoulders after a day of self-propelling (even with the aforementioned powered wheels). I can access nothing, because it hurts to lift the chair up steps (mainly because I need the aforementioned powered wheels, but not entirely). I tip over again. I fall out again. Yes, it's partly because I've only been using it about three years, but it's also because I'm dyspraxic, have crappy useless muscles thanks to FMS, and am generally a bit rubbish. I don't intend to stop using my wheelchair, by any means, but I like having a choice of mobility aids. One day, when I am very rich, I will have a garage full of them. I'm well on the way - I'm already getting on for a hallway full.
And that's the last time I *ever* give that explanation, because I don't have to explain my mobility-aid choices, and I'm tired of feeling like I do. Hurrah for self-determination and confidence in myself! (I give it a week.)
Anyway, I went for a (very) little walk in the rain. Which was probably rather dangerous, now that I think about it. But it was much fun, and I made it to the little cafe that's nearby, and had a cuppa before going home again.
Must go - Hamish the Little Girl Dwarf Hamster is running around very loudly in her mouse-sized wheel, and I'm taking every opportunity I can to persuade her that I am a non-scary person whose hand she can sit in. She hasn't yet decided whether I am Friend. She's been living with me for about three weeks. She'd better figure it out soon.
Thursday, November 05, 2009
Or is it the responsibility of service providers (of all kinds) to make services accessible to an entire disabled community, whether or not I'm there to provide them with a reminder that some people are disabled?
And what do I do with people who are basically too stupid, or at least too focused on other things, to understand - without a constant visual reminder? Do I give in to the section of society that needs me to use a wheelchair all the time - or is that a betrayal of people with invisible and less-visible impairments, who also need to be represented?
Wednesday, November 04, 2009
Mainly because I have been talking theology in the pub with church friends. "Beer," my friend tells me, "is proof that God loves us." But we did also discuss real theology. Including humour and faith, church history, St Paul on women - and, um, the European Union. Not sure how that last one fitted in.
Tuesday, November 03, 2009
I am so sick of people assuming I can always manage inaccessible venues - which gets them off the hook from having to arrange accessible ones - because I sometimes use crutches. My church is holding confirmation classes in a venue which has "a few shallow steps". This unwillingness to think about access means that the burden is conveniently shoved onto me - the burden of finding accessible parking near enough that I can walk in, the burden of coping with steps, the burden of sitting on unsuitable chairs in pain for an hour and a half so that the following day is a nightmare of agony for me...
And then there's the situations where friends organize informal things in inaccessible places. They tell me how awful it is that the place isn't accessible, and shouldn't society try harder? No. YOU should try harder. If you are organizing something, you are responsible for making sure your disabled friends can get in. Otherwise, they are left feeling like you don't want them there. As I feel this week about something that was organized in such a way that I couldn't get to it.
This isn't right. We are society. When society creates disabling situations, that's because, one at a time, individuals contribute to this creation of disability. People need to think about things like access - it's not all my responsibility. I've e-mailed someone important at church to say I'm 'worried' about access. I could have put that more strongly, but I'm British and passive-aggressive.
Damn, but I wish I'd inherited more Irish character for these situations.
Monday, November 02, 2009
The one and only reason why I would buy something like Amazon's Kindle would be instant access to books. I love books, and a big part of that is the feel of them turning down the pages I want to go back to until the whole book is a beautiful dog-eared mess, the look of them arranging the higgledy-piggledy multi-coloured rows when I walk past and wondering how they get so messy again so fast, the amazing sense of them they're spread out all over my desk and spilling onto the floor and I am clearly working on something awesome underneat all this literary mess. None of that complete experience of books is possible if they're all neatly organized in little tabs on an electronic screen, and I'd never exchange my life is books for my books are in this little reader and my house is tidy and empty and dull.
At the same time, sometimes I want books NOW. I wouldn't object to a bookshelf into which I could type in 'The Shining' (I want to see how it compares with the film, having been to see that on Saturday and remembered how odd it is) and have it appear, transported directly from Oxfam Books, pre-dog-eared and fully, deliciously tangible, at the end of the Fiction shelf.
I don't want to give up CDs for similar reasons. Unlike a lot of people, I still buy them - I have about 200 and counting, all on display in our new CD case. They're not as fast, as easy or as world-accessible as being able to bring up Spotify, select a song I've heard, listen once more to be sure I like it, go over to iTunes and buy it. But how can I sit in the dark for the first time with Tori Amos or Missy Higgins or Kristin Hersh if there's no effort involved in stumbling upon them and considering whether to buy them and that incredible moment when I first experience their latest musical triumphs? I'm fairly sure they wouldn't say that their life's work is to create background music for shopping malls, dinner parties or internet browsing.
And yet, it's so easy to bring Athlete's latest, conclude that 'Black Swan Song', while a work of genius, is the only good song they've written in years, and move on to the next thing.
I'm a devoted minion of the internet and everything it has to offer, but I still wonder. In our society of instant access, where we no longer remember how to postpone gratification for a better reward, are we sleepwalking into an entirely virtual, self-referential-with-nothing-to-refer-to, eerily empty postmodern world?
Still, I'm off to iTunes to buy 'Black Swan Song'. It may be an emo-inspired, easy-listening ditty for the instant gratification generation, but it's still really good.
Sunday, November 01, 2009
However, my life is currently entirely overwhelmed by The Research Project From Hell (OK, it's not that bad, but it is taking over my life entirely and proving impossive to crawl out from underneath - let's call it The Research Project from Purgatory). So there isn't a great deal to say today.
Yesterday being Halloween, we went to the new ('largest screen in the world') drive-in at Pinewood Studios and watched The Shining. Not the greatest film ever. Visually stunning and effective, but not great in terms of plot or character development. We also noted Kubrick's huge debt to Hitchcock.
I am about to go to church to celebrate All Souls' Day (which is actually tomorrow, but we did All Saints last week), where the Mass will be said for many friends and family of the congregation who have gone ahead of us. Including my grandparents. Should be a good service. Happy All Hallows Day, people.
The golden evening brightens in the west;
Soon, soon to faithful warriors comes their rest;
Sweet is the calm of paradise the blessed...
- 'For All The Saints', William Walsham How
Sunday, October 18, 2009
I can't believe it's taken me this long to find FWD/Forward at http://disabledfeminists.com/ . It's a team blog on the subject of disability and feminism. There should be more blogging about the spaces where disability, sexuality, gender and life converge. This is a fantastic example of such.
Cripchick's blog is a poetic, activist take on life and disability. I'm still wrapping my imagination around the poem she put up yesterday. Beautiful and world-expanding. The theme of this year's Greenbelt festival was 'Standing in the Long Now' and experiencing moments in time as moments in eternity - but I too often waste energy fighting to get past the many moments of frustration in life, rather than appreciating them with the depth that Cripchick does in this poem. I want to see the frustrations of the 'carer'/disabled person relationship as more than something to endure as quickly as possible.
My Girl is blogging her journey through her father's experience of cancer at http://twentysevenpercent.blogspot.com/ . She wrote about planning and living life yesterday, in a way that made me think differently about how well we cope with disability, as a disabled family (that's how I think of us, along with multi-cultural family, and mixed-religion family, and really will be married soon, if we can just get a bloody move on with the planning family). It's interesting when you get the chance to see these things from up on someone else's viewing point - if only in passing. I spend so much of my life thinking I'm a failure at, well, everything. It's sometimes useful to remember that I have a lot to deal with, and that I usually deal with it quite well. Not the most social model or activist-y viewpoint. That doesn't matter. To everything there is a season...**
- ASBO Jesus makes me happy
- Two Lumps is one of the funniest online comics out there
- Shapely Prose is amazing and inspiring writing, whatever size you happen to be: check out Schrödinger’s Rapist
- Thinking Christians of any denomination will adore the Sarcastic Lutheran
Anyone know any good sociology/social theory blogs? I'm in the market for some reading around such things.
And with that, I must fly. I mooted the idea of a lay choir at church, and suddenly I'm one of the founding members of something that might turn out to take up rather a lot of time. How I get myself into these things, I do not know. (Well, I do. I say things, while in sub-hypomanic I can do everything mode, like "I'd like to set up a lay choir" and people actually take me seriously. Crazy.)
Wanders off singing 'Praise God from whom all blessings flow'...
*Ha. Ha, ha ha ha, ha.
Saturday, August 22, 2009
I have something of an idea for immediate protest, for those of us who are fortunate enough to receive DLA Mobility Component and have a Motability car, on finance or lease.
In recent days, I've taken the liberty of writing to Motability and the Minister for/of Disabled People (Jonathan Shaw) suggesting, that if my DLA care Component is ever given over to my Local Authority to 'supposedly' provide a care package for me. That, "as I seldom have enough money for care and also food and other necessities, I will be applying to cancel my Motability lease, as soon as, or, if the Government decide to divert or remove my DLA Care Component. In order that I'll have enough money to live on."
I'd maybe like to see others do the same, or similar? I think the threat alone to Motability and Government 'face', would be enough to see a complete backdown of this 'hair brained scheme' of the Government's?
Motability is seemingly worth in the region of £16 billion pounds a year to the British economy and motor industry, to say nothing of the revenue the Gov't takes in, in fuels and oil consumption from recipients! There's also maintenance and upkeep to be threaded into theses costs and the cost in human terms if some 250,000 cars were suddenly disposed of and flooded back onto the second hand market!
Worth a thought and some possibly, some action?
I would add to this suggestion of writing to the minister and/or to Motability generally, that we could CC our letters both to the chief executive of Motability and perhaps also the Transport minister. If the government doesn't care that taking away our DLA care component will have a knock-on effect on our whole lives, maybe they need to start realising that it will also have a knock-on effect on the whole economy. There are, after all, a lot of us out there...
A lot of people have been pointing me towards CPAG's published 'assurances' that DLA will not be affected. (Interestingly, they have taken down their earlier press release about this.) "It's only Attendance Allowance, so that's all right," I'm now hearing from fellow campaigners. A reminder of three things here:
1. If the government sets the precedent of taking away cash benefits and handing them over to local authorities, do we really believe they're going to stop at AA? Once a precedent is set, it's far, far easier for the government to say "It worked with AA" and remove our DLA - without having to write a new Green Paper on the issue.
2. Do we *really* trust the government on this? We've heard similar assurances on the new Employement Support Allowance that have failed to materialise. Once the government's broad phrase 'disability benefits' in that Green Paper is passed as *law*, do you really think they won't use that as a perceived mandate to get rid of DLA too?
3. If it really is 'only' Attendance Allowance that's going to be scrapped, are we actually going to sit back and do nothing because it doesn't affect (most of) us directly? The principle of independent living should apply to ALL disabled people, not just the disabled people who are under 60. An ageing population means the majority of disabled people are 60+. They need our support just as much as younger disabled people do. Maybe more, because they're being herded into care homes en masse. (I know - my father owns a nursing home. His is a very nice one, but I still wouldn't want to be *forced* to live there when I wanted at least the choice to remain living independently at home.)
ADD YOUR CAMPAIGN IDEAS in the comments! I'd love to hear what people have been doing. Me, I've been promoting the idea on every social networking medium I can find, getting my friends, family and PAs to sign up for the campaign, trying to help spread other people's ideas, and writing the odd e-mail. It's not much. (I've had swine ful - talk about 'viral campaigning', haha. I am, ergo, utterly spoonless right now). But I continue to believe that armchair campaigning and 'viral' networking like this CAN make a difference. Just look at how many thousands of people have signed up to contribute something to this one campaign. Last I heard, it was over 20,000. Now that's not bad.
Thursday, August 06, 2009
Without my DLA I'd be practically housebound, unable to afford supermarket deliveries and would pretty much have no quality of life at all. Also bear in mind that most people develop some kind of impairment in old age; Attendance Allowance, a benefit for over 65s who need assistance, is currently the benefit at the top of the 'at risk' list. So signing this petition isn't just for those who are currently claiming, signing is an investment for your own future!
What BendyGirl says:
It's impossible to explain how much people like me rely upon the extra income from Disability Living Allowance... Without my DLA I would be housebound. I would not be able to afford to run a car, without which I cannot shop, access health care, collect prescriptions or pay for the care I receive. The idea of allowing local authorities to control this benefit is enough to give me nightmares for the rest of my life. Local authorities already ration care, the process is desperately stressful and only those considered to have 'critical or substantial' needs will qualify. Trying to justify oneself as disabled enough for the local authority is the most degrading thing I've ever experienced, topped off by a social worker who clearly stated he would 'ensure I lost my entire care package'...
What I said:
Benefits and Work sent me the following e-mail. They're looking for 1000 people to sign up before they start hardcore campaigning, in order that there are enough people on board to make a different. I think their campaign is massively important, given the serious threat to our Disability Living Allowance*/Attendance Allowance** and other benefits.
DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.
Yet the government is proposing either means-testing DLA and AA, or removing it altogether. Their proposal to put the money in the hands of local councils is TERRIFYING, especially to those of us who have experienced first-hand the way that council-funded care has been limited, cut and removed from a majority of disabled people. Councils would leave DLA claimants without enough money either to fund their care or to cover their disability-related costs. The end result of this could well be the death of the poorest disabled people. Do we want to live in a society where the richest are subsidised to the tune of millions (HBOS et al), while the poorest people with the highest costs are left without enough money to fund their care, to support their mobility needs or potentially even to eat?
Benefits and Work's e-mail about their campaign, detailing their campaign, is copied below. As of this morning, they have over 5000 people signed up to this campaign. We need more people involved, because not all disabled people have the energy, resources, money or access needed to campaign on this issue. Ironically, and usefully for the government, the fact that we are disabled could lose us our disability benefits. So we need YOU.
Claimants have just 100 days to prevent their DLA and AA being abolished.
A government green paper has revealed proposals to stop paying ‘disability benefits, for example, attendance allowance’’ and hand the cash over to social services instead.
Under the plan, current claimants would have their disability benefits converted to a ‘personal budget’ administered by local authorities and used to pay for services,– not to spend as they wish.
Once the green paper consultation period ends in 100 days time, if an almighty row has not been raised, it is likely that both major political parties will see the lack of outrage as a green light to end both DLA and AA.
We’re looking for a minimum of 1,000 claimants, carers and support workers to join our campaign to save these benefits from being abolished. Find out how you can take part from this link:
We know that many people will take false comfort from the fact that, unlike AA, DLA is not specifically named as being for the axe. But if the government was planning only to abolish AA it is extremely unlikely that they would refer constantly throughout the green paper to 'disability benefits', a term which includes not just AA but also DLA.
Others will dismiss this as just another idle discussion document and our concerns as scare mongering. But it’s much more than that.
36 meetings have already been organised around the country for people working in government and the caring professions to meet to be told about the setting up of a new National Care Service which would oversee the system. In addition, a stakeholders panel of more than 50 voluntary sector organisations, trades unions and academics has been established to offer advice to the government.
Some organisations and individuals, such as RNIB and welfare rights worker Neil Bateman writing for Community Care magazine, have already voiced their alarm.
But not every disability organisation is opposed to the proposals and some even agree with them.
In a press release, Disability Alliance has welcomed the publication of the green paper and said that it 'looks forward to working alongside Government and all the other stakeholders in bringing these plans into fruition.' They have even said that they agree that there is a case for 'integrating disability benefits such as attendance allowance' into the new system.
One thing everyone does seem to agree on is that huge cuts in public spending will have to take place in the next few years as a result of the credit crunch and global recession.
Political parties are desperately looking for the softest targets to be the victims of these cuts. Dismissing the green paper’s proposals as hot air and not worth worrying about could be the costliest mistake you ever make.
Find out more about the proposed abolition of DLA and AA and how you can join our campaign to fight back:
The government's green paper on care threatens to remove our disability benefits, currently given to us to cover our disability living expenses, handing the money over to local councils (so that they can treat us in the way BendyGirl describes above). This would be a disaster. DON'T LET IT HAPPEN. Join the campaign.
And to end with more reasons, in our own words, why we can't lose this benefit - Batsgirl says:
The reason DLA and AA are given as money and don't require receipts and suchlike to prove how the money was spent, is because of the huge diversity of disabilities and living conditions it covers, and because the expenses don't always work out that neatly.
Let's explore an example: grocery shopping. I have to pay more for my grocery shopping than an able-bodied person.
First of all, I have to pay for home delivery. I rarely have the spoons to manage to get all the way around a busy, bright, noisy, complicated supermarket, even with a mobility scooter - much less to then be able to get myself and my shopping home, and then immediately put it all away as well. To someone with a condition that makes moving about painful, who has difficulty lifting and carrying, who becomes tired very quickly, or who is easily confused, that's a triathlon.[...]
I had typed as far as my ninth point before I realised I'd gone a bit off course and deleted most of it. Hopefully I've demonstrated my point: disability-related expenses crop up in unusual ways and aren't always possible to calculate - which is why getting DLA or AA in the form of extra money to be spent at the claimants' discretion is utterly invaluable.
*DLA is given to claimants up to the age of 65 who have significant care and/or mobility needs.
**Attendance Allowance is the equivalent benefit for those over 65 - but there is only a care component, no mobility. As far as I can tell, this is because people over 65 are expected to have mobility problems. Nice.
Sunday, May 03, 2009
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 Is Everywhere writes about a Torchwood episode that I don't remember recognising 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, it will only carry on.
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.
Friday, May 01, 2009
And so, in lieu of a post, I would like to draw your attention to The Goldfish's Blogging Against Disablism 2009 archive. It will grow throughout the week as people add their posts to it. It is a truly awesome annual online activism-fest, and everyone should read as much of it as possible.
This year, I particularly recommend Batsgirl's post on issues and expectations around disabled parenting. It will make you think.
Happy Blogging Against Disablism Day.
Monday, March 16, 2009
I am stressing massively, in a way that only a dyspraxic with obsessive tendencies can.
I sent an e-mail to my tutor yesterday, having *lost the plot* over one more inaccessible situation (not physical access issues - more structural, if that makes any sense). I offloaded about *all* the stress that structurally and attitudinally inaccessible situations have been creating for me on the course, over the last few months in particular.
Now she's likely to want to know exactly what the problems are and what can be done about them. Putting them into words? Not going to happen...
I've held it together by a thread - but still quite impressively and successfully - for six months in this situation. I don't like people seeing how vulnerable I am. Especially worried as I've just been accepted for a PhD (no news on funding yet so it may well not actually happen) and I really wanted to communicate the illusion of how capable and normal I am in relation to that. Who'd appoint a teaching assistant who can't cope with ordinary circumstances on an MA course?
Thursday, March 12, 2009
...as I have been away too long.
Recent events include:
- Getting one distinction and one merit, and deciding to apply for a PhD anyway (and then changing my mind the minute the application was in and it was too late)
- Having the worst Friday 13th of my *entire life*, involving broken lifts interrupting my studies and forgotten passports nearly ruining Dublin holidays (but The Girl, ever the hero, had us on another flight by the next day)
- Broken powered wheels, frustrating inabilities to focus on work, general irritation at PAs (it's not personal), and a DAN demo that I almost didn't make it to (but some great friends helped me out and I got there in the end).
- A month of (mild, fortunately) depression over missing The Girl, perceiving exploitation in my department (whether or not it's real), and generally being tired and in pain
- Some surprise, some worry and a general ontological crisis following acceptance onto my PhD (but I probably won't get funded, so I'm trying not to worry too much yet)
- Delight at finding a doctor from whom I can get exactly what I want, when I want it, and realising that it's partly because I now know what I want and when I want it.
Going back to debates over professional power, emancipatory research, and women and medicine now.