Saturday, April 29, 2006

Blogging Against Disablism Day - Celebrity Endorsement!!

Blogging Against Disablism Day now has its own celebrity endorsement, but I shall let Lady Bracknell tell you all about it as it is all her doing.

Andrew and Granny, a year on.

Well, as you can see – because I know you’ve been counting – we now have 117 participating blogger for Blogging Against Disablism! Thanks very much to BBC Ouch who have given us a third mention today on their weblog. Also, I found out yesterday that Brownfemipower moved the date for Blogging For Radical Fun Day from May 1st to May 5th in order to avoid coinciding with our event, so a big thank you to her. Thank you to Damon who has added a link to BADD as an external link on the Wikipedia entry for Disablism. And of course, thank you to everyone who has signed up so far.

Today is the first anniversary of my uncle Andrew’s death. Here is that lovely photograph of him that R took at my cousin Jenny’s wedding.

We were down in Suffolk when it happened and whilst Andrew here, I didn’t write much about that strange day.

We went down to Suffolk on the Tuesday. There was no particular reason why we visited at that time. Mum had the day off on the Thursday and she was going to drive us to Ipswich to see Granny Kelly, who was very ill in hospital. Her life wasn’t in direct danger, but she had had all sorts of problems which meant that effectively she’d lost the skin from her calf muscles. Despite everyone’s best efforts, she had got into quite a state trying to manage at home, lost a lot of weight and was now suffering from jaundice.

Andrew was in also hospital but this was neither unusual or worrying. In this case he had an impacted bowel. The way he was, Andrew wouldn’t have complained of being constipated and even having pain until it was severe enough for medical intervention. Andrew had been very distressed and disorientated on the ward, which had made Dad a little nervous. Trouble with Andrew and his distress was that as well as being upsetting to see him upset, people who didn’t know him could be quite frightened. And indeed, Andrew would hurt someone who he thought was going to hurt him.

Anyway, the family agreed that Granny was not to know about this. And indeed, there was really no point in mentioning the fact that Andrew was in hospital at all; he would be out by the weekend and then we could mention it. We thought she might not have long for this world and just a little bit of worry could send her over. Not for the first time in her life, the family underestimated its matriarch.

And it all went wrong with Andrew. Clostridium difficile is a bacterium that lives in the gut and can grow out of control when the natural flora is unbalanced. Clearing out an impacted bowel can do it. Really simple stuff. By the time Thursday arrived, we knew he was on his way out.

The fact that [...], Mum and I were on our way to visit Granny when we heard he had died; the fact that I was in Suffolk and Mum had the day off were just some of the many coincidences which meant that within an hour of Andrew's death, Granny was surrounded by her family.

And Granny, tiny and slightly yellow at the time, was amazing. This is a lady who is severely ill herself, and has just discovered that her youngest and most vulnerable child (who was always a child, in many ways) has died of a short illness she never even knew about. Within five minutes of our arrival at the hospital she said to me, “When Andrew was twenty-four, he had a kidney infection and I prepared myself for his death then. So as far as I am concerned, every year since then has been a blessing. I have had twenty-four years with him that I didn’t expect to have.”

Later when we gathered in the family room, sitting in the centre of the room in a horrid hospital wheelchair and a nightdress that would have seen better days even if it wasn’t two sizes too big for her, she addressed the family. She questioned my Dad and uncles about the important points; had he been in pain? Were you there? They didn’t need to explain the fact that they hadn’t told her, “I wouldn’t have been able to do anything about it if you had,” she said. Which, of course, is true.

Then she said, “I have seen the end of him. I was always concerned about what would happen to him in the future, but now I know that he had a swift and peaceful end with his family close by.”

My Granny is an incredibly woman. A year later, and she is much better. She walks with a stick now and has had a stair-lift installed; two years ago, she had no mobility issue at all, she claimed to have entered her eighties with no arthritis whatsoever. I actually doubt this assertion, but certainly she’d never had anything to complain of. But she’s getting about and doing her own shopping and everything. I honestly didn’t think she would be able to go home again, let alone live independently; generally folks that age who get sick don't get better.

Hmm, don't mean to suggest her good health is some sort of moral achievement, but she did actively hold on. She held on to make R&A's wedding in August. Now she's knitting blankets for her first great grandchild.

I find it very difficult to remember that Andrew is gone. I don’t miss him on a regular basis because I would only have seen him at family occasions. But then he is missing. Well, I wrote last year about what he meant to us.

Wednesday, April 26, 2006

Flesh and Bone by The Telephone

Johnny Cash. That’s the answer to the question, “Who did the best version of Personal Jesus originally written and performed by Depeche Mode?” in case that was playing on your mind.

The pain has been quite severe and I have lost a lot of sleep over the last few nights. I have invented a number of new and exotic curses that I mutter to myself for the duration of any period on my feet. These include; tiffitut, cuggafug and fucklebunk.

Basically I am okay. Frankly, the inability to sleep because of pain is slightly preferable to the sort of nightmares I was having last week. Swings and roundabouts and none of them too bad really.

[...] has acquired a sampler for the keyboard on eBay. You can record or download a sound and spread it across the keyboard; so for example, you could record a sung “Do” and then create that sound at a pitch you would never be actually able to sing. All music students, in my experience, record their own bodily functions and play Moonlight Sonata in farty noises; it’s a rite of passage.

But perhaps most crucially, living in Whitby, we now have the rare opportunity to produce songs such as Space Age Love Song and Wishing by a flock of seagulls, quite literally.

We’ve now set a date to go visit my folks in about a month’s time which I am really looking forward to. They have a lovely big garden and a hammock, what more can I say? They also have a pond now.

For my folks' miraculous thirtieth anniversary, we were making them a firescreen. Two years later, we still haven't finished this project. However, it was only in the eleventh hour that we realised we weren't going to do it on time and the heroic P took me on a wild dash across the North Yorks Moors looking for something, anything that would do as a present. It looked like I was going to have to buy them one of those vacuum cleaner cover things. Rather like these. I have no taste for them but that was honestly the best thing I could find - my choices were that appalling.

As a last resort P drove me to a pottery place he knew in Pickering. He didn't know what it was called, but as we drove up I saw it was The Green Man Gallery. And indeed, most of their items were green men - you know, leafy ceramic faces you find in gardens and places (this explains what they are and what they mean). And Mum and Dad's first date took place at the Green Man pub on Halloween 1973.

This was a piece of luck.

My parents adored the Green Man we bought them and attached it to the side of the house. They then bought a second, smaller one which they put on a garden wall. I have recently bought a couple more in bisque (unfinished ceramic), which I am going to paint up for my folks' garden. I thought that if we put them out now, by the time Tinker is old enough he or she can go looking for them in secret overgrown places.

My Mum wants to take us to all sorts of towns and beauty-spots when we're down south. I'm a little worried about this; at Christmas she had counted on my being able to go shopping with her in order to get my birthday presents and how ill I was came as an unpleasant shock. She's talking about Cambridge, Kings Lynn and I don’t know how long she has been going on about the gardens at Angelsea Abbey. Here are some rather nice pictures. When she first told us about them my mother declared, “It is a lovely place and they even have a motorised buggery for people who can't walk very far.”
Publish Post

I hate disappointing people generally, but especially Mum who is really quite particularly bothered to see me suffering at all. Never mind, I think she will be more realistic this time. And to be honest, there's still a part of me thinking, "I've got a month. I could improve a great deal within a month and be able to have all sorts of adventures come the end of May."

We'll see.

Tuesday, April 25, 2006

Wednesday Morning, 3 a.m

I don't know why I am up at this ungodly hour. . I am miserable that my pain seems to have got worse after a period of improvement, so much worse that I'm thinking about returning to the doctor and talking about other pain relief options. Unfortunately my GP is half way up Everest just now and it's not so very bad I can be bothered to explain my life history to another doctor only for them to suggest something truly ridiculous.

I have just realised that it is actually Tuesday Morning, 3 a.m but that isn't in a song.

On a more cheerful note, we now have
seventy bloggers Blogging against Disablism on next Monday. And we got a second mention on BBC Ouch, hoorah!

Blogger was playing tricks on me all yesterday, so while I was waiting for it to sort itself out I started fiddling with my template and produced my ever-so-slightly new look. What do you think? Don't all shout at once. Yeah, that was what I was thinking; I'll try putting it right later.

I finally began reading The Da Vinci Code after much maternal badgering and a certain friend's reassurance that it was "highly readable nonsense". I was a touch apprehensive as I have heard a lot of silly things said about it. Of course people either love or hate something when it becomes so popular and I sensed a lot of snobbishness being expressed about it, perhaps because it is a best-selling novel, it is about some fairly big ideas and yet it is perfectly accessible to the great unwashed.

When I'm done I will write a review for Blogging Bookworms but it has already wound me up. It isn't snobbishness; I have my moments, but this is more the fact that as a member of the great unwashed, I resent being patronised. It's not the religious stuff that bothers me, but the assumption that Mr Brown's readers know absolutely nothing about absolutely anything.

For example, during a rather cheesy flashback, the protagnoist has his Harvard students gasping to learn about phi (the golden ratio or Divine Proportion as Brown prefers) and the Fibonacci sequence. As you'll remember, phi is 1.618 (well approx. one plus the square route of five, divided by two) and like the Fibonacci sequence is all over the place in nature, in all sorts of physical and numeric proportions
. Now I fell ill and left school at fifteen, but we'd covered that already. And we didn't gasp or gape or suddenly develop a crush on our teacher (whose strong jaw and grey highlights didn't add anything to their bookish appeal).

I realise it may be wrong to assume that that everyone knows this. However, I don't think it is ridiculous to assume that those people at Harvard had a far superior education to my own. I could give many such examples. I mean, it is fine to recap on any relevant subject matter, but I'm half expecting a passage coming up;
"I have no idea how big this circle is," said Sophie, her big green eyes welling with feminine tears.

Langdon thoughtfully scratched his handsomely dimpled chin. "If only we knew the radius we could work it out."

"Ooh la la!" said Sophie in German. "You surely do not mean that there is a way of telling how big a circle is from how long the radius is."

"That's right," said Langdon, raising a scholarly eyebrow "Using a thing called pi."

"Pie? Like in the song by your Don Maclean?"

"No, pi is just a bit over three," Langdon explained, "If you times the square of the radius by just a bit over three, you should get the area."

Sophie began to faint but Langdon caught her in his manly arms. "My God, Robert!" she cried, "I have a doctorate in Mathematics and I never knew such a thing!"
No sorry, the trouble is I haven't read any books in ages and I have been editing the novel which makes me highly critical if not downright pinickety. It isn't nearly as bad as I make out. My own novel is currently much much worse. I am just transferring my own literary frustrations onto one of the best selling books in the entire world. This is the agony of my art and all that, so do forgive me if you love the book. I'm not yet half way through and I do want to find out what happens next. And I am in pain.

Right, perhaps I'll have another go at sleep.

Saturday, April 22, 2006

The Fall of Civilisation

I intended to write a grand essay for Blogging Against Heteronormativity Day but as I have been rather poorly all week, you’ll have to make do with the little story of one of our heroes, Alan Turing.

The world might be a very different place if it wasn’t for Alan Turing. Most famously of course, the Allied Forces may not have proved victorious in the Second World War if it wasn’t for Turing’s contribution to the cracking of the Enigma Machine. What is certain is that very many more lives would have been lost on both sides and the whole thing may have lasted much longer.

You really ought to read the magnificant Simon Singh’s The Code Book if you are at all interested, as my capacity for maths may fall rather short of even explaining the gist of the problem. Basically you have a machine which creates and translates an alphabetic code. But in a very complicated way – check out the Wikipedia entry if you even begin to understand probability. This machine might be configured in so many different ways that even a modern computer would take literally years to work through all the possibilities. Add to this the fact that the configurations of this machine were changed on a daily basis

Nazi Germany were entirely confident that this was an uncrackable code and used it to communicate all sorts of strategic information – including, for example, the whereabouts of U-Boats in the Atlantic Ocean. With two grandfathers in the navy, the Goldfish’s unborn self was at stake. Maybe you too.

With the help of an older version of the Enigma machine given to us by the Polish (who had been working on this long before us) Turing and his team created a new machine called the Bombe, a computer which… well, look I really can’t do the maths so you’ll have to take my word for it that it was very clever and it did the job. And we won the War.

After the War, all this remained a total secret and Enigma machines were still used for military purposes elsewhere in the world, genuinely believed to be uncrackable. This is one of the reasons that Turing was not hailed as the national and international hero he really was, during his lifetime.

Another profound way in which Alan Turing has effected our lives is his contribution to computer science. Turing invented the Turing Machine, a mathematical thought experiment which could stimulate the logic of any computer which could possibly be constructed. Do you understand what this means? In 1936, this guy laid down the model for at least the next seventy years of computing theory. My computer works according to principles he said were inevitable. So does yours. He is therefore widely considered to be the father of modern computer science.

Turing also made a tremendous philosophical contribution to our age and this is the aspect of the man which has gained hero status in my own esteem. He was one of the first people to seriously discuss the implications of artificial intelligence and perhaps most notably, the questions about the nature of human existence and experience that arise when we are confronted with the idea of intelligent computers (still much more of a fantasy back then).

If I think therefore I am then what it is about the act of thinking which distinguish me from a computer’s computing? What am I, beyond a sophisticated organic computer? What are our thoughts and emotions beyond chemical and electrical events? Is there something more to life? Is there something which makes the thought processes of a human impossible to imitate and if so, what would that be? What are we? Who are you? What? Eh?

The answer to these questions and more will not be coming to a blog near you any time soon. Point is that Turing contributed at least as much to Philosophy of the Mind in the Twentieth Century as Freud. And these are just the highlights. The guy also did all sorts of things I don’t really understand because he was so very much more clever than I am.

So why am I telling you all this for Blogging Against Heteronormativity Day?

Am I telling you all this to demonstrate that gay people are capable of making a contribution too? Uh, no.

Am I telling you all this because of the tragic way our nation chose to treat my hero? Only a few years after he had saved the world, he was arrested and convicted for gross acts of indecency (committed in his own home, behind closed doors, with one other fully consenting adult). He escaped prison on condition he took hormonal therapy, which amounted to a sort of chemical castration. He became impotent, obese and developed breasts. His private life was exposed in the newspapers. Meanwhile, his security clearance was taken away – when our lives depended on it, we trusted this known homosexual with our most precious secrets, but in peacetime he was out on his ear.

Am I telling you all this because even now we are trying to write the guy out of history, with movies like The Enigma which has the problem solved by rosey-cheeked straight boys and girls with no mention of our beloved stuttering homosexual?

Nope. The reason I am telling you this is because Alan Turing was just forty-one when he (rather poetically) ate an apple laced with cyanide. Forty-one. I don’t think that it is fanciful to assume that he wasn’t quite finished at this point; that he perhaps had a great deal more to give. That we effectively killed one of the greatest minds of the Twentieth Century, of any century because of our preoccupation with sexual conformity, our obsession that other people’s most private and intimate activities should look and feel exactly the same as everyone else’s.

Leonardo da Vinci was twenty-four when he found himself in prison charged with Sodomy. Fortunately, his Papa got him off. Fortunately for him, fortunately for us, (fortunately for Dan Brown), fortunately for almost everyone who has lived in Europe since.

An important principle in both biological evolution and human history is that progress is only ever made by the mutants; those organisms or individuals who break the rules. Non-conformity is a necessary condition for greatness. It isn’t a sufficient condition; some mutations are harmful, most are neither here nor there. However, attempts to suppress such superficial differences are not only to the detriment of an individual who has a right to these freedoms, but to the detriment of every one of us alive and all those of us yet to come.

This was not at all articulate but given my current state it was either this or writing merely “Heteronormativity is a bad thing. Stop it!”

Friday, April 21, 2006

One In Seven

Lady Bracknell's esteemed editor has composed this excellent post which sums up my own feelings about disablism. A fantastic rallying cry.

Life is a lemon and I want my money back

Check out Lady Bracknell's alternative lyrics to As some day it may happen that a victim must be found from the Mikado and Agent Fang's alternative graphic for Blogging Against Disablism Day.

Yesterday was a thoroughly shitty day. I wasn’t able to sleep much during the day, but I seemed incapable of any sensible thought whatsoever. Just lying there was distressing because I was so extremely confused about every electrical signal that passed through my brain.

Fortunately I was able to distract myself. I lay in bed and watched three films beginning with a C; Cat on a Hot Tin Roof, Caught on a Train and Cold Mountain. The latter two I hadn’t seen before, the first is an old favourite I am slightly ashamed to say (it is terribly melodramatic, isn’t it?). Caught on a Train was part of my viewing the complete works of Stephen Poliokoff in no particular order (have now seen Shooting the Past thanks Vaughan, it was gorgeous). Cold Mountain was just one that it has taken me ages to get round to seeing. It was a bit too much really, beautifully made but a bit of an ordeal. I had lost perspective on my own physical discomfort and thought all these sissy men with their septic gunshot wounds should pull themselves together. Pain? What would they know about pain?

Today I am feeling slightly more human, and managed to have a much needed bath. The television licence enforcement officer then came round before I was decently dressed so I had to deal with him and demonstrate that we weren’t receiving a signal. Now feeling very weak and generally pathetic, but am tucked back up in bed and seem to have regained the ability to think.

And I’m pissed off. What’s set this off? I don’t think I have had a virus of any sort. I haven’t been particularly overdoing things. I have been altogether very well behaved. So much pain when I've hardly done anything, it just isn't bloody fair.

Wednesday, April 19, 2006

River deep, mountain high

I have been having a few bed days, during which I have learnt that I can hold my breath for up to ninety seconds and that, however bored I may get, I will probably never manage to count all the chips in the woodchip wallpaper. You’ll probably be quite relieved.

You may remember that when our friend Geoff Muse drowned last year, there was talk of giving him a second, Viking funeral. Well weather-permitting, they’re going to do this on Thursday, just before Goth Weekend. They’ve got a special longboat which they are going to tow out to sea with Geoff’s ashes on it, and then shoot burning arrows at it. Yes I know there may seem some irony in burning someone’s ashes, but back in the ninth century it wouldn’t have taken so much time to build a longboat and inform the police and coastguard about what you were going to do.

There’s an article about this in the Whitby Gazette. I don’t think I will be up to even trundling down to the seafront to watch, which is a shame as I missed his first funeral. Never mind, it will certainly be valuable for others who are in far greater need than I and [...] will probably go.

Our sea defences are maintained with rock which comes across in these big Scandinavian ships. One day one of these Danes or Norwegians (I'm sorry he couldn't tell the difference) came into our friend H's jet shop and explained that he'd been up in the graveyard on the cliff top (the one where Dracula first takes a bite at Lucy, as you may recall) apologising to the gravestones for what his people had done to our people. Apologising for the Viking invasion.

Also in the Whitby Gazette, there is news of my GP who is currently somewhere on his way up Everest. I am particularly concerned with the sentence; Dr Sutcliffe entertained his fellow climbers with tales of medicine as they wound their way up the Loboche Kola river. Now I am convinced that half of Nepal are recounting tales of my hilarious medical history.

On the subject of good people, anyone who hasn’t read about the Guerilla Gardeners yet might like to do so. They are a group of people in London who come out at night and plant things on patches of ground and in empty concrete pots and things belonging to the local councils. Their activities are of questionable legality, but unquestionable virtue and anybody who lives in a city, and has the capacity and aptitude for this sort of thing really ought to take a look.

Here is the most pointless item I have seen on eBay this week.

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Blogging Against Disablism Day - update

Thanks very much to everybody signing up to Blogging Against Disablism Day so far.

Yesterday the event got a mention on BBC Ouch thanks to Lady Bracknell and on Ragged Edge thanks to Mary over at Edge-Centric. Natasha from Audacity Magazine has also said she’ll give us a mention. Other sites linking to us include Breakthrough UK, Pam’s House Blend and H2CM. If anybody can think of anybody else who might be interested in increasing the exposure of this event, do chirp up.

Four points I should make clear, having received a few questions about these things:

1. Blogging Against Disablism Day is open to everybody, disabled and non-disabled. We already have a good number of non-disabled participating bloggers. Non-disabled people who wish to take part may have disabled family or friends, or they may work closely with disabled people. Then again, they may simply be interested in the principles of fairness and equality, and recognise eliminating disablism as part of that.

2. Blogging Against Disablism Day is obviously about blogging, but I think we can be fairly loose with our definition of this to include things like Do You Speak English? and podcasting as mentioned by Kerri, which may be far easier and more accessible for some of us. So long as it is something which is published on May 1st, and is against disablism.

3. Disablism and Ableism are exactly the same thing as far as I can work out – I have always heard it described as the former, but as Becky pointed out it is more often described as the latter in different parts of the world. I am sure there must be arguments for using one rather than the other, I don’t know.

4. Disablism effects people with all sorts of impairments; this is by no means a phenomenon restricted to those of us with physical conditions. My own condition involves a mixture of cognitive and physical effects, and I have experienced mental ill health. Varying symptoms provoke quite different prejudices and obstacles, but the same mechanism is involved. In many ways, people with mental ill health, conditions like Autism and learning difficulties face more prejudice than the wheelchair-using archetype of a disabled person.

Do shout if you have any other questions or if you notice any mistakes, or anything at all.

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Update 21/ 04/ 06: Please read the One in Seven post over at the Perorations of Lady Bracknell

Tuesday, April 18, 2006

Comment Moderation, Visual Impairment

A word about Comments. In a bid to make Blogging Against Disablism Day as accessible as possible, I removed word verification from the comments facility. It wasn’t too bad, a wee trickle of spam comments followed. However, over the weekend I have been getting dozens, far more than I can cope with deleting manually. You can’t block an individual user and these naughty bots drop their litter all over the place.

So I have now put Moderation in place, which keeps the facility accessible but it means that it will take until I am next around before your comments will appear. Fortunately I am generally around on and off all day, at least all day GMT. This is purely to do with filtering out the spam, nothing to do with censoring anyone.

I don’t suppose since this was last discussed anyone has thought of a way round the problem or thought of a system we could suggest to Blogger? The only thing I can think of is some form of complaints procedure, to get users who use robots banned (the spammers are not generally anonymous, but they are certainly repeat offenders).

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Saturday, April 15, 2006

It's Political Correctness Gone Mad!

I dislike this expression so much and really thought by now that people would have stopped using it. While the phrase itself has lost all real meaning, it continues to diminish all sorts of important arguments, issues and events and I am fed up to the teeth of hearing it or seeing it written down.

A Google for the phrase "political correctness gone mad" summoned 82,000 results, compared to just 9260 results for the phrase "here is my poem" (which I thought and hoped would be far more common on the worldly widely webly). The results for the latter were far more interesting.

There are and always have been limits on freedom of expression within context. This means that there are circumstances in which it is just plain correct to use certain terms and to avoid others. This could be for many reasons from logical consistency and courtesy through to protecting people from harassment, intimidation and worse.

I think most people agree with this idea in principle. Nobody really believes you should be able to say whatever you like, wherever, whenever, and to whomsoever you like, do they? Yet obviously there are going to be vast differences in opinion about where exactly the boundaries lie. Society needs to debate this, but talk of Political Correctness trivialises such debates.

Are they trivial? Sometimes yes. I ought write to my bank and tell them the correct title among the Miss I am called on my debit card, the Ms I am called on our cheque book and the Mrs I am called on our bank statement. This is discourtesy or incompetence on their part and merely annoys me.

However, sometimes they are not at all trivial. For example, very serious issues are raised by the Race and Religious Hatred Bill – an example of something which often receives this clumsy label. Even though I disagree with the legislation, there is nothing trivial about the problem it is attempting to address. People are killed, injured and terrorised in the UK because of racial and religious hatred. It is happening now and it could get worse if we don’t act to prevent it. Once again how we go about this is up for debate, but it is not a lot of fuss about nothing.

Then again, we can’t automatically assume that all those who attempt to manipulate language do so in a genuine attempt to promote fairness, equality and justice. And there have been some examples where over-sensitivity about certain minority groups has resulted in farce - every Christmas there is some fuss about the risk of religious references offending non-Christians.

However, Political Correctness does not exist; these words don’t represent a belief or set of beliefs. It is just name-calling, not an argument in itself. Describing more sinister or excessive control as such does no-one any favours because the phrase doesn’t actually mean anything, just “This is over the top, excessive,” whether it is excessive liberalism, or excessive authoritarian controls on our language or behaviour. It is especially ridiculous with the gone mad! on the end as if the spectre of Political Correctness has been drinking and listening to Country Music for three days solid since his dog died and his wife left him and now he’s grabbed an axe and is heading into town to wreak his revenge on anyone who ever said chairman instead of chairperson.

I suppose I have a particular bugbear with this for three reasons. One is that certain family members use this phrase way too often, about almost everything; "It rained all last week; it's political correctness gawn maad!" (that's a Suffolk accent, could you tell?)

The second is that in discussions about disability issue, all sorts of opinions are dismissed in this way by those individuals who don't have the capacity to offer a reasoned disagreement. It is a very common tool of sabotage and general annoyance.

But the third is that I begin to suspect that those people who use this phrase very often are actually deeply anti-egalitarian, but cannot say so, because it would be to admit that they enjoy privilege and would like historically disadvantaged people to remain disadvantaged. But given how often I hear this, that cannot possibly be true. Can it?

Thursday, April 13, 2006

Lessons I have learnt about writing novels - Sex

Today is not my day in so many ways. However, I did say I would blog about sex and I did write most of this already, so here I am. Today, this blog contains very strong language and sexual references.

So about sex, or more precisely, writing about sex. I don’t just mean writing about the act. There isn’t a lot of actual sex books anyway. For example, it occurred to me that I cannot remember reading a single book that involved the act of oral sex. If you can think of an instance, I bet no-one got a pubic hair between their teeth. Fact is that many actual "sex scenes" are superfluous to the narrative.

Occasionally you feel short-changed w
hen after two hundred pages of increasing sexual tension, especially when you too have fallen in love with one or other or perhaps both of the characters and finally their eyes meet and finally, finally after two hundred pages they both understand that the feeling, this deep ache, this knot in the stomach, this throbbing tension, is entirely mutual and then – suddenly it’s the next morning, the sun comes up and they’re drinking coffee together.

But most of the time, we can happily fill in the blanks and are only embarrassed by the authors' attempts at erotica. At least I am. Sex in novels shouldn’t need to be at all titillating to the reader, but authors start using slang words for anatomy where there hasn’t been a single slang word in the prose of the book so far, the urgent and spiky language of pornography; [no see, I did put it in here, but then I got scared].

They also resort to terrible clichés, the same uniform version of heterosexual sex we see in films where the male partner always initiates, they always end up on or in a bed, always in a state of complete undress and usually with the female partner on top. This is because in films, we can then see as much as we are allowed to see within a 15 certificate, i.e the breasts. In books this device is entirely pointless, and yet they still do it.

Nobody ever laughs to utters a word at any time between initiation and orgasm. Everyone is beautiful and sex is almost always mutually mind-blowing. Unless they're married, in which case it is awful and the whole affair takes place in the dark.

I know. There are notable exceptions to the rule. I guess I have read a lot of trash. So why is the case? I mean this problem with sex, not my shameful reading habits.

Well, I reckon, that almost every one of us thinks that we are personally, a complete and utter pervert. Either that or we’re a complete freak because we don’t know what the hell other people are going on about. Because nobody’s experience and observation of sex and sexual behaviour is exactly as it is the movies or the books or anywhere else except in real life. And the main reason that this sort of sex, this presumably ordinary experience of sex and sexual behaviour, rarely exists anywhere else is that we’re all too afraid to be seen as complete and utter perverts or frigid or whatever.

And like I say, this just isn’t about the act. This is about everything between the amount of eye contact made between strangers on a bus right through to the actual business. Our awareness of each other as sexual beings even in the absence of any real attraction; casual flirting, intimidation, the games we play with that stuff, the rules we must adhere to all the time with everyone, all this complicated signalling malarkey.

When I write, I find myself feeling extremely self-conscious about all of this, anything vaguely sexual or sensual. Is it normal to think about this or react like that? Would someone feel this way or am I the only person in the whole wide world who ever had that thought? I don’t want to write anything which my readers will find unconvincing. And I certainly don’t want to write anything which is going to deeply offend or disgust anyone, if it turns out I am really wide of the mark.

Lessons I have learnt? Hmm. To be honest, I’m still struggling. In my editing process this is coming up time and time again as an area of difficulty; these bits are either very stilted or they are fine, but so honest and explicit and make me very nervous. I’m not talking about the most bizarre sexual act I can bring to mind, but just ordinary imperfect things going on between ordinary imperfect people. There’s really very little sex in this book.

However, as I have written about before, I very much believe that being honest, truly honest is the most important thing in fiction (rephrase that sentence until it makes sense. There? No, never mind). It is an almost moral responsibility, as well as an artistic one.

My golden rule is not to write these things within twenty-four hours of speaking to one’s mother, one’s grandmother or one’s good friend who is a novice nun. That is perhaps half the battle. It can help to write this stuff when you are tired or perhaps slightly drunk and to try and write it all at once without going over it too many times. Even turning off the computer monitor so one cannot see one's own words until it is all down.

Another thing that helps is to read really good brave fiction. Vladimir Nabokov’s Lolita is one of the best books ever written at all and is unflinching and at times very beautiful about the most inappropriate sexual attraction and obsession one could think of. D H Lawrence does pretty well, although some of his language is very dated now. Sarah Walters also writes very sexy books. I guess one should avoid pornography and erotic literature which is a means to an end, thus not too concerned with realism.

And even now I’m thinking, nah, I should cut those bits out and write it all the way it happens in the movies.

Wednesday, April 12, 2006

Tomorrow I will blog all about sex

Well, looks like Blogging Against Disablism day may have been a mistake. I almost wrote Blogging Against Shakespeare Day which I suspect might prove more popular (I have been listening to The Reduced Shakespeare Company Radio Show which can be listened to via the BBC Radio Player). Is there any reason why you haven’t signed up yet? Do you think it is a bad idea? Do I need to spell out what the thinking was here? Okay.

Thing is that there are an awful lot of people reading blogs on a regular basis; many more people than leave comments. Naturally discourse about disablism and disability issues are never going to gain the popularity of, for example, people writing about sexism. Blogs like I Blame The Patriarchy (radical feminism) and Bitch PhD (sex positive feminism) are huge. Disability just isn’t that sexy, we are a minority and indeed, disablism does not impact even on the lives of disabled people quite as much as sexism.

So we humble little blogs talk about these issues from time to time in our quiet corners of the Internet. Usually it is written about from a personal, individual perspective and those folks who didn’t know much about it may pass through and think, “Oh, life isn’t so fair for disabled people,” but actually they don’t think twice about it. And we don’t blog to change the world, so it doesn’t matter.

However, it occurred to me, following these other highly successful Blogging Against days and Carnivals and so on, that if enough people did this on one day, and effectively linked to one another through a central point, then anybody passing through any of our sites, any of them, would (a) get to read something about disablism, perhaps from someone who had never written about such things and (b) find themselves at a gateway to several other people doing the same thing. The collective effort, we thought, could reach potentially hundreds of people in the blogosphere and show that this matters. To more than three of us, which is where it stands just now and I’m
the only crip among them. Come on, there are more than two people reading this. I can see you. Yes, you.

I do of course realise this is not everyone's cup of tea, not by a long shot. So now I'll shut up about it and tomorrow we'll forget all this happened, k?

Tuesday, April 11, 2006

Blogging Against Disablism Day - 1st May 2006

To read or contribute anything further to Blogging Against Disablism Day click here.

Blogging Against DisablismInspired by Blogging Against Sexism Day, Blogging Against Racism Day, Blogging Against Heteronormativity
Day and others, I had the idea of having a Blogging Against Disablism day.

Many of us blog regularly on subjects surrounding disablism and disability issues, but the idea is to see how powerful disabled people and the supporters of equality can be as a combined voice in the blogosphere. Are there as many people prepared to put their two pennies’ worth in on this subject as there are on sexier subjects such as Race and Gender?

If you'd like to take part, all you have to do is to leave a comment, including a link or URL to your website. I shall then add it to the list of participating bloggers, which I will put up on the sidebar. I have taken off Word Verification on my comment facility so hopefully everyone can take part. Do take a note of the date: Monday 1st May. If you are regular visitor here I shall remind you, but if not you’ll have to remember - although do check back here on the day to read other blogs against disablism.

Please also comment with any questions or suggestions.

Meanwhile, it would be great if you can link back to this post on your own blogs to spread the word as far as possible. You can do this the usual way providing a link to this post as follows;

or you can copy the following code to include our picture designed by Anon. using the following code:

Participating blogs can be about anything to do with disablism.

You can write about personal experiences or observations. About disablism at work, in education, within bureaucracies and health care systems. About disablism in history and in different cultures around the world or about how disablism interacts with issues of race, gender, age and sexuality. You can write about how disablism effects the social, sexual and family life of disabled people, or how disablism impacts on our Human Rights. You can write disablist language and portrayals in the media, on film or television or in literature.

You can write about some small aspect of disablism which you feel is neglected in mainstream discourse or write about something as large as what disablism is, its causes and what we can do about it.

Whatever you like so long as it is about the prejudice and discrimination faced by disabled people, the institutional and social barriers which put us at a disadvantage.

Please Note: Language Amnesty

Language is very important in the struggle against disablism, but there is far from any sort of international consensus on what language is and is not appropriate. By all means, blog about the language of disability, but as you’re visiting other blogs on the day do be prepared to read the odd word or phrase which may grate with your own sensibilities. I have prepared this short post explaining some of the different terms that are used to describe disabled people.

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19/ 04/ 06 : Update to answer some of your questions.
21/ 04/ 06: The One in Seven post over at The Perorations of Lady Bracknell

A brief guide to The Language of Disability

This is designed to very briefly explain some of the words used to describe people who experience disability.

Disabled People

In the UK, we are usually referred to as disabled people. Many people feel this makes most sense within the context of The Social Model of Disability, which differentiates between impairment (our physical, intellectual, cognitive or psychological limitations) and disability, which we understand to be the practical, political and social barriers which stop us doing what we would otherwise be able to do.

We believe that disability is a societal experience that we are subject to, therefore we are disabled people.

People with Disabilities

In the US and Canada, it seems we are usually referred to as people with disabilities. The idea behind this is to put the people first and the disability second. In this context,
disability and impairment are essentially synonymous; disability is understood as a fundamentally medical or physical phenomenon.

So it makes sense to described say people with disabilities as opposed to disabled people in the same way a person with depression is far more dignifying than a depressive person. A medical condition ought not to define a person.

Handicapped People/ People with Handicaps

This word has been demonised among the disabled community in the UK, but some individuals prefer it because of its etymology; the idea that their limitations are necessary in order to make it fair for everybody else. People may also prefer it to disabled because of the way that disabled is used in other contexts. For example, in computer programming disabled means “off”, not currently functioning. Others prefer it because they wish to defy what they perceive as over-sensitivity on the part of some disabled activists.


I struggle to argue for this. I guess it is an attempt to neutralise difference or disadvantage; we are after all, all differently-abled in some way. Which poses the question, what is normally-abled? as it were.

However, I can’t help thinking of The Gospel of Disability Language According to Turtle that defines Differently-Abled as

“You can shoot milk through your nose, or lift weights with your todger. Or something. All those of you who walk a bit weird, like, aren't differently abled, you're crappily abled until someone SORTS THE BLOODY PAVEMENTS.”

Anything with the word “Challenged” or “Special” in it

I have never heard any disabled people refer to themselves as Challenged or Special. Fully prepared to be corrected, I would think that most disabled people find this sort of language patronising. Special, for example, was voted the 5th worst word in Ouch’s Worst Words survey.

Sunday, April 09, 2006

What do you think about my new blogroll?

I have been shuffling round my blogroll and would appreciate feedback. I have long had a serious disability-bias to my blogroll, partly because most of my on-line friends are crips and partly because I am interested in what other disabled people have to say whether they are my friends or not. However, recently I have been thinking that I perhaps I ought to spell this out.

Not that I want my blog to be any sort of platform for disability issues particularly, but I wanted to draw attention to the quantity and quality of disabled bloggers, as disabled people. As far as the blog itself is concerned, this is my soapbox, nothing more and after a year of miscellany you are not about to find any sense or order to the things I decide to write about.

However, I would like your opinions as it is your blogs on the blogroll. Can I use the word crip? Do people get that? And I must say that in some cases I have identified people as disabled even though they haven’t explicitly said they are. But they are. In other cases, I may have wrongly assumed that folks were non-disabled.
I also think I have made Melbamae and Bloggine Mone honoury disabled people - I say think because I don't actually know if Mone is disabled or not.

And do non-disabled bloggers mind being singled out and shoved at the bottom? I can't see Bitch PhD putting on a limp to try and get a higher spot up my sidebar, but these are by no means lesser bloggers for the fact they wound up at the bottom. In fact, given the disability-bias to my browsing, they have to have impressed me some.

And I've made the rash move of naming my favourite disabled bloggers. I thought of saying blogpals because these are folks who are either my actual factual friends or people I am fairly friendly with, but blogpals sounds really childish. I don't actually think that any disabled bloggers who aren't writers or artists or one of my favourites ever comes here, so they'll never know that I put them second place in the hierarchy, but I still feel a bit guilty about this - the others are well worth reading, a mixed bag but well worth it.

What do you think about all this?

And if you want to move your own position on this blogroll, do let me know - chances are there will be brain fog mistakes as well as wrong decisions.

Thursday, April 06, 2006

Desiccated Follower of Fashion

I am going to have to buy some more clothes for summer on account of things falling apart beyond repair. I find this a truly miserable task, as I have little money, I am a rather odd shape and I am generally rubbish at this stuff. However, since I have to suffer through the ordeal of clothes shopping, you're coming along with me. One will have to excuse the British and feminine bias to the following, as well as the general dullness. There is however a picture of the sexiest hat in the entire universe to follow.

There’s bad news this season, as the Boho look is apparently out. I liked this Boho look. I had dressed in a certain way for years, and all of a sudden I found myself at the height of fashion. No longer, alas. There now seems to be a fad for wearing braces to hold up one’s trousers and shirts with ties. Now in my own gender exploration phase, I regularly wore a bow-tie and on occasion, a silk cravat. But I never wore an ordinary neck-tie; that would have been plain weird.

Colours that don’t suit us Celtic types, especially my own complexion comme la mort réchauffée, are also coming to the fore as well. Cream is the new ivory, baby pink the new carnation and nude is the new... full-dressed? I really don't understand this stuff.

Of course the Goldfish makes her own fashion and will still be covering up her shapeless legs and avoiding all pale and pastel shades which make her blotchy bits look blotchier and her pale bits look blue. She did however fall take a fancy to this dress from Dorothy Perkins for some reason, until [...] said it would make her look like Aunt Sally. She doesn’t know who Aunt Sally is, but this didn't sound like an endorsement.

There are many disadvantages to shopping for clothes on-line. Postage and general expense, obviously; there are no dirt cheap shops on-line. Colour, texture and fit is not always obvious from a photograph. Whilst we have all had a laugh at how some items have been photographed by ordinary folks auctioning their wares on eBay (Lady Bracknell gives a good example), many professional attempts leave a lot to be desired when you are more interested in the garment than the model's face, legs or décolletage.

Take this item on the left from La Redoute. I reckon that this is a clingy fabric which is unflattering on the midriff of even this slender model. However, since the eye is drawn down the front of the blouse rather than to the blouse, one isn't quite sure.

Catalogue shopping was ever thus, but La Redoute is by far the best mainstream clothing catalogue available in the UK. They can cope with the idea that women who do wish to exercise some modesty in their dress don't necessary wish to do so in calf-length pleated skirts and twin-sets all in a seductive shade of beige. They also have a sale on just now, as do Debenhams if anyone's into that.

For the top-heavy among us, Bravissimo offer a really excellent if limited range of clothes designed to fit bosoms from a D to an H cup. These include really smashing strappy tops like this one with integral bras as well as a fitted shirt and a suit available in varying degrees of curviness. I wish I could afford some of that stuff but it is somewhat of a revolution.

One great advantage of on-line shopping is that it is possible to visit more Fair Trade shops on-line that one could ever find in any ordinary town. I am not about to get sanctimonious about Fair Trade; some items are not available or affordable as Fair Trade goods, but where you can do it, well, it is better value for everyone.

My favourite clothes shop has to be Nomads, which sells
extremely groovy Fair-Trade clothing, most of which is very reasonably priced. It's funky stuff, but not that sort of cosmic hipppy festival ware which makes one look as if the colour-bunny had an accident on one.

Lots of nice long freesize skirts in natural fibres, dyed using vegetables (some very interesting coloured vegetables, but we'll take their word for it). Very good for the summer. And the winter. And the bits in between.

If you hate this sort of thing, The Green Apple sell less eccentric things which are Fair Trade, jeans and t-shirts as well as other bits and bobs, although the best bit is their soaps named after Beatles songs.

I also found an interesting shop called American Apparel (I can give you the US store front too). They make clothes in Downtown Los Angeles and describe themselves as vertically intergrated. They try to look after their employees and the stuff is simple cotton t-shirts and things but in a very good range of colours for both chaps and chapesses. On the dear side, but then I like to be careful with my hardly-earned cash.

On the accessories front, Nomads do loads of lovely bags and sarongs as well as the clothing. The India Shop and TradeCraft have some nice bits and pieces of jewellery as well as other stuff.

Pachauti sell Fair Trade hats and they are not too dear, not really. They sell this on the right; the sexiest hat in the entire universe for just £20. If I were a man, or the sort of woman who could pull it off, and if I wasn't a wheelchair-user who has to look up at people's faces a lot, I would definitely buy such a hat. And wear it. All the time. Probably have to dye my trenchcoat black. In fact I can imagine a whole new and sexier life I might have if only I possessed such a hat.

A few other curiosities on the accessories front.
Romp sells, would you believe, ethically-produced fur. No, me neither, but I thought it was an interesting concept. Smart Tart is a Fair-Trade handbag shop which made me giggle somewhat for a number of reasons; the style, the price of the things and the entry in the guestbook which reads Thank goodness it's washable - it survived a litre of cranberry juice being poured into it!

Attractive shoes are a must for wheelchair-users because everyone looks at our feet. Guess they're looking to see if we have any feet or something. I'm on the look out for also some ridiculous impractical sandals to shoe off my painted toe-nails. I consider my feet to be all right, it's just where my legs begin that it all goes horribly wrong.

Most Fair Trade shoes are expensive and generally quite ugly. There is also the problem that following ethical shopping links, you get shoes which may be suitable for vegetarians but not necessarily those of us concerned with human exploitation. Beyond Skin covers all bases and makes beautiful footwear, Terra Plana doesn’t do the vegetarian bit but does all right otherwise (including the shoe pictured). Unfortunately in both cases the shoes cost an absolute fortune. Vegetarian Shoes sell very ethical shoes at not ridiculous prices, but there are all really rather sensible.

United Nude sell weird shoes. They are just weird. Like this on the left here. Obviously they cost a bomb too but they are interesting to look at. Well, I think I like them.

At this point I was obviously getting a bit bored of the whole shopping malarky and started investigating how patent leather comes to be patent. Apparently they used to use a linseed-oil based lacquer but these days it is usually a plastic coating. So there you go.

As with most real-life shopping trips, I have given up and come away empty-handed. You weren't a whole lot of help, I have to say. And another disadvantage of on-line shopping is the distinct lack of anywhere to get a cup of tea and a slice of carrot cake as a reward for our efforts.

Tuesday, April 04, 2006

The Social Model of Disability

There are several reasons why I wanted to write about The Social Model. One is that very shortly we’re going to announce a Blogging Against Disablism day and The Social Model does clear up some cross-Atlantic confusion about the language we use around disability. Also because various reading and discussions have been making me think about what it means to be disabled. I tried to do something like this yesterday, when I was less awake. I was so unawake that rather than thinking better of it, removing it and putting it to one side, I managed to delete everything I had written. Woops.

The Social Model of Disability is a way of understanding what disability is, as opposed to what it ought to be, or the way it should be approached. However, The Social Model does lead to various conclusions about the way forward. First of all, let’s start with a bit from The Serenity Prayer by Reinhold Niebhur;

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

You’ll see why in a minute.

In the past, disability was seen as an entirely biological or physical phenomenon. The difference between me and a non-disabled person is that I have various things medically wrong with me. Indeed, many disabled Americans describe medical conditions as disabilities as in Cerebral palsy is my disability. And quite sensibly, given the usage, they use people-first-language, describing themselves as people with disabilities as opposed to disabled people in the same way they would describe themselves as people with cerebral palsy rather than cerebral palsy people.

In the UK, since the 1970s, disabled people have begun to acknowledge that the obstacles in their lives are not exclusively to do with some biological quirk or condition. Some of them are, some of them aren’t. Thus we differentiate between impairment (our particular set of cognitive, physical or psychological limitations) and disability, which encompasses the social, political, attitudinal and practical obstacles which limit our opportunities.

Impairment is a fact of life. Although many of us would very much welcome some medical advance to remove or alleviate our situation, most people who self-identify as disabled anticipate having their impairments for the rest of their lives.

However, disability is movable. Rather like gender, disability using this definition, is a largely cultural construct, which varies in perception and meaning between cultures and projects certain roles and expectations upon those people who are perceived as being not as they should be.

A necessary example. My condition results in pain which limits the distance I can walk. Before I got a wheelchair, I couldn’t leave the house. Before I got an electric wheelchair, I couldn’t leave the house alone. Before adjustments were made, ramps put in and doorways widened, there were various buildings which I couldn’t get into and certain personal errands which I could not run myself.

Thus, my experience of disability has very greatly decreased over time, despite no significant improvement in my health. When it comes to wheelchair-use and other mobility impairments, it is relatively easy to notice practical steps which can remove unnecessary disadvantage for disabled people. With other sorts of impairments, it gets more far complicated.

The Social Model does not suggest that all the disadvantages experienced by disabled people come from society. There are many disadvantages I experience which nobody can do anything about; I am not employable, in the conventional sense, and there is no number of ramps, flexible hours and positive attitudes which can help with that one. Similarly, disabled people do not demand that lifts be put into medieval castles or that National Parks be flattened or that businesses go bust trying to make adjustments.

However, the implications of the Social Model go far far deeper than the familiar issues of physical access and equal opportunities in employment. Whilst impairment can happen in an instant, the experience of living with impairments in a disabling society is as complex and dynamic as belonging in any other marginalised group. For example, dissecting the causes of low socio-economic status among disabled people is at least as complicated as dissecting why Black Americans are far more likely to experience poverty than White Americans. It isn’t just to do with whether a firm is prepared to hire us for any given position, but it is a range of subtle restricting factors which exist in all areas of social and political experience from media representation and political rhetoric, through health care systems and education, to families and peer-groups and the individual themselves.

I think the mention of the individual is very important, because we are part of society; both products of a disabling society and participants in it. I resisted both my manual and electric wheelchairs because I was depressed by the implications (implications which quickly faded into insignificance when I finally gave in). We are also capable of perpetuating disablism against one another; people with physical impairments can be derisory about those with cognitive, learning or mental health impairments and vice versa. It is not as if we are a group of blameless unfortunates waiting for the world to get better for us.

But applying the Social Model means that the world can get better. If disability is understood as a purely medical phenomenon then our position must remain the same, and the only strategy must be to attempt to normalise ourselves as much as possible, to accept manmade boundaries and prejudices as natural and somehow come to terms with the tragedy of such an existence.

The Social Model means we can look at our lives, and decide for ourselves what is and is not possible and demand the right to fulfil our real potential as opposed to the low expectations we may have had dumped on us.

Do let me know if that makes sense, as it is something I am so familiar with, it would be easy to write it down and make some serious error.

After I wrote this I remembered a few words the great Lady B said on the subject.