Saturday, March 31, 2007

You're the loser, I won't dismiss you out of hand.

I like myself so much better when I’m writing fiction. It isn’t that I feel I am good at it. I get completely lost in it, I don’t think about whether it is any good or not, I don’t care about the possibility that it is all crap and will never be good enough for anybody else to read. It is only when I come to read over it, to edit it, that it occurs to me that have written hundreds of thousands of words of complete and utter nonsense. And that causes me to panic, full physical heart-racing stomach-churning cold-sweat panic.

So I dawdle. I allow myself to become distracted by other things. Stuff to do with other people. Stuff for other people. But this makes me like myself less, because I don’t get lost in it, I do care very much about whether it is any good or not. And in the end, everything I do for other people feels like a little act of treachery; it is never nearly as good as it might have been.

It’s not that I have some chronic self-esteem problem, it’s just that I fuck up almost everything I do. This isn’t self-pity (it might be, I’ll tell you in a minute), it’s not that I imagine I am a bad or worthless person, but I make a cup of tea and it’s a small miracle if I manage not to spill boiling water or milk or blood. And that’s not very funny when it’s true, actually. Okay, so it is a quite funny, sometimes. But other times it causes no end of hassle, costs energy, sometimes money and generally pisses everyone off.

And it is me. It is, in part, my doing. For example, I do have poor co-ordination, which I can’t help. If I had really appalling co-ordination I would not attempt to pour boiling water into a mug to make tea, but it’s not that bad. And if I put every ounce of my concentration into the task at hand, I am less likely to spill things. I will still spill things, but less often. Thus, none of the ways in which I fuck up are completely and utterly out of my hands, whether it is to do with co-ordination, or short term memory, or absent-mindedness, or any other aspect of cognitive dysfunction and fatigue. So I am failing, me, failing, not just my wiring. Several times a day, every day. The more I do, the more I fail at. Not just practical stuff, but social stuff too and, of course, my writing.

Which, thankfully, isn’t particularly off-putting, not after ten years. The only things it stops me doing are those where the cost is very high, or where I am likely to put myself or others in danger, like if I got behind the wheel of a car, for example.

However, it does impact on the bigger picture, this chronic state of rubbishness. Always trying not to be rubbish. Always afraid of being rubbish. And always fucking up, often in ways I don’t understand.

Oh misery me! You still here? Yes, sorry, it was self-pity, after all.

I know I am holding myself back. This is getting silly really, the time I have spent on this Bloody Fucking Book. Especially this stage, which this winter has mostly been held up by such feelings not the Lurgy, which has been relatively kind to me; the first winter in many years which has not invited a significant relapse. Okay, small matter of house move, but you know I'm still doing pretty well. I put enough crap up here. If the best book I can write is complete pants, then I really have to find out sooner rather than later. Or simply give up and think or something else to do with my time on Earth.

Ah, but that’s the other thing, isn’t it? If there is absolutely no possibility of making a living out of writing, then there is absolutely no possibility of making a living out of anything. In my melodramatic moments, I feel my life depends on this. Which is as good a reason as any to postpone the great revelation, if indeed I am due such a revelation.

Nah. It must be doable; half the stuff I read is complete pants anyway, there must be room on the bookshelves of the world for me. And even if this one is pants and nobody will touch it with a barge-pole-length bookmark, at least I’ll know then I can write a book and then I can write another one which will be better. Or more saleable. I’m sure I could make up some crap about Wizards or the Catholic Church – perhaps Wizards in the Catholic Church. Or better still, Wizzard in the Catholic Church. The Pope, desperate to improve the Church’s image, employ the glam rock band Wizzard to come up with ideas. They sing, “I wish it could be Christmas everyday.” And so they make it Christmas every day (when the kids start singing and the band begins to play). And all the priests and bishops start wearing glitter and platform shoes. But somehow it all goes horribly wrong. Uh… because… of… someone with a French accent, a nasty scar and a limp, obviously! Come on, you'd buy it out of kindness.

In a bit of a hole about the book, just now. It's all such tremendous crap.

Wednesday, March 28, 2007

I surmise with my little blue eyes

After Monday’s post, I've been thinking about ancestors. The idea of some sort of social or cultural heritage tied up with our genes is one which amuses and interests me. It especially amuses me when people – often those with a basically xenophobic agenda – like to talk about being indigenous to the UK, or England specifically. As if any of us are.

Yet even I can succumb to a degree of fantasy about my own supposed genetic past. Talking about this with one Scottish friend, he said (I'll try to do the accent),
“Ach well, that’s the Celt in ye, lassie. Them Saxon Sassenachs see the past as something which is gone and irrelevant. Whereas us Celts see the past as inextricably linked with the present, the noo. History is a people's memory, and without a memory, man is demoted to the lower animals.”
Which I thought was Malcolm X, but perhaps Malcolm X had some Celt in him too; he was somewhat ginger. Actually, he did have reddish hair apparently (not evident from what photos and footage I’ve seen, but I read mention of it somewhere and added him to my list for Alexander, who seems to be heading in that direction). My limited understanding of genetics suggests that Malcolm X could not have got his gingerness from genes of European origin. However, he could well have had some Celt in him; he did have a white grandfather, and in any case, very many African American men carry a Y chromosome of European origin because of what is sanitarily described as the sexual dynamic of slavery. So Malcolm X could well have had some Celt in him.

Which kind of illustrates the nonsense of what my friend said. Whilst people and peoples do have a history and a heritage, it has very little to do with our blood, but rather who we are in this life, our social and political experiences and how they came about.

I don't know much about my family tree, but there are at least thirty different characters from whom I am directly descended, between me and the beginning of the twentieth century. By which point they are living lives quite different from mine, some in other countries and there is very little information about them. I know that many couldn’t sign their own name on the 1901 Census, leading to several different spellings of each of the relevant surnames.

However, like I say, I am very susceptible to fantasy. For example, I know at least one of my kin was a member of the IRA (freedom-fighters, unlike the Provisional IRA who were terrorists – important differential). He was executed for his troubles; I picture him as Cillian Murphy in The Wind that Shakes The Barley. Meanwhile, another of my kin was an Irish member of the British Army around the same time, who shot himself dead by accident (I fear this man is the character with whom I have most in common). And already at that point, those from whom I am directly descended had eloped to England because of a forbidden romance from either side of the political and religious divide. A story which I paint all shades of romantic in my mind.

My maternal grandmother’s family were Gypsies or Roma. The information surrounding this is rather messy, being conveyed as it is through my Gran, whose most frequent references to this heritage include the fact that her grandfather had an earring (well, I don’t suppose many chaps had earrings in the 1920s’ England, when she was growing up) and the fact that she is herself the victim of a jinx, a Gypsy Curse. My grandmother is not an especially unlucky person, but she has had some misfortune in her life, the greatest of which is an inability to appreciate what she’s got. However, she thinks she is jinxed. By the Gypsies from whom she is descended.

I like to think that there is actually a story behind this, that there was a curse that she was told about as a child. However, I suspect this was something my Gran made up. After all, I make things up about the Roma. Like about my blue eyes...

My EyeBlue-eyed people are really a very small minority, only about 8% of the world have blue eyes. Most but not all blue-eyed people are pale-skinned and fair-haired. But for example, in Northern India it is not uncommon for folks to have green or blue eyes.

The Roma are originally refugees (a status resumed several times over, including in some parts of twenty-first century Europe, alas). They left India, the Punjab in fact, in the eleventh century and made their way across the Middle East and into Europe. A lot of the Roma traditional beliefs carry echos of Hinduism, although Europeans often mistook these for the occult, black magic or whatever. Thus my Gran and her jinx.

So anyway, I decide, I must have got my blue eyes from the Roma. Forget all that ubiquitous Celt; my eyes belong to India!

Gets better. Because of course our neighbours across the North Sea, the Vikings, were also very well travelled. We know they made it as far West North America and as far East as India. And it is speculated that it is the Scandinavians who settled there at this time who injected blue into the local pallet.

Thus my theory goes that my blue eyes are very well travelled. They went half way round the world and back over the course of 1300 years.

Whereas in reality, well, it really doesn't matter. In truth, my eyes have only been as far as I have which, possibly mirroring the passage of the relevant genes, is only as far as Ireland and back.

To celebrate my extraordinarily dilute Indian heritage, here is a song. Also, my proposal of what we need to do about the railways in this country. Bare in mind that at this point in the movie Dil Se, we know this particular train is eight hours late. Don’t you think we could cope with a forty-five minute delay if everybody had a good old singsong? Especially one the like of this.

Chaiyya Chaiyya by Sukhinder Singh and Sapna Awasthi (that's not them, this is Bollywood; the chap is actor Shah Rukh Khan, the lady is Malaika Arora).

Tuesday, March 27, 2007

Though the claith were bad, blythly may we niffer

A load of clothToday I have been sorting out my Cloth Box, attempting to reduce the contents which is spilling out the top. This was a horrible task. The trouble with my Cloth Box is that
  • Every time an item of clothing or soft furnishings becomes unwearably knackered, I put that on one side with a view to using the fabric later on.
  • Every time I make something, I save the remnants because they're bound to be useful at some later date.
  • Meanwhile, I keep seeing lovely bits of fabric and thinking up weird and wonderful projects - especially when I have a baby nephew; there are outfits I think he'll like, Wendy Houses and wigwams, yet more soft toys. But sometimes I just buy stuff because it's cheap; I still have no idea what I'm going to do with all that PVC.
And once the pattern is established, it becomes impossible to throw good fabric away, even a two inch square scrap of good fabric which will be no use to anyone (but it might, it might; it could patch up a hole in... something... sometime). Apart from the fact that I am making very slow progress with my sewing projects on account of the fact that I am yet to learn how to use a sewing machine.

And if I wasn't having a frustrating enough time as it was, I moved awkwardly such that I ripped a hole in the skirt I was wearing, a skirt I had made, a skirt that had taken hours and hours and hours...

Monday, March 26, 2007

(not so) Great Britain

I really wanted to write something about yesterday’s 200 year anniversary of the Slave Trade Act, which abolished the British slave trade. I don’t agree with calls for an apology, because I strongly believe that in order to gain anything from the study of history, we have to be rational about it. Apologising to dead people on the behalf of other dead people is rather irrational. Casting ourselves and others in the roles of historical characters is both irrational and very dangerous, especially when we are assigned our parts according to the colour of our skin.

I believe the greatest lesson we get from the Slave Trade, and from the much greater machine of British Imperialism (which fucked over many more millions of people than it actually enslaved) is the power of moral expedience. And funnily enough, discussions about abolition over the last few weeks have brought the legacy of this to the fore.

I am genuinely fascinated about why people should feel defensive about slavery. I don’t, partly because it is indefensible, but mostly because I was not there, I have no guilt on that score. What I do have is an acknowledgement that the reason I grew up in a relatively safe and prosperous part of the world compared to others is not because Britain is inately Great and groovy, but because Britain was an aggressive military power that invaded and exploited other countries of the world and made a packet. They turned a quarter of the world pink in the days when pink was a macho colour.

Cannot be undone, alas. The impact of the British Empire, i.e. a comparison between the way things are now and what they would have been like had this not happened, is incalculable. It’s a bit like asking what the world would have been like circa 400AD – or indeed today - had the Roman Empire never existed. We’re talking about hundreds of years, many generations of people, all manner of social and scientific progress taking place at the same time. Which is not to say that we must regard the British Empire as a morally neutral fact of the past. The Roman Empire isn’t either; they committed similar atrocities, but for example, if they hadn’t happened to nail a certain Jewish political rebel to a cross for his troubles… well we just can’t imagine.

What this acknowledgement should mean, as with any position of privilege or advantage, is that we have a responsibility to help support those people and countries which are struggling, to support themselves. Which is a complicated and messy business when it comes to dynamically different cultures. But is even more complicated when you bring racism into play.

Which brings me to the most problematic demonstration of this moral expedience. There have been many daft objections made to the idea of apologising for slavery, including the fact that it wasn't just us, without the participation of African and Arab slavers, we'd never have had a trade, as well as the truly incredible idea (the most recommended comment on the BBC News Have Your Say page) that Africa should thank us for stopping slavery when we did. However the most interesting objection is probably that
We cannot and should not apologise for something which everyone thought was all right at the time.
Two major flaws with this argument. The first is that generally, people who do bad things think they are doing the right thing at the time, or else don’t realise that what they are doing is so very bad. That’s why people say sorry, having realised their mistake; really bad people don’t say sorry because they never realise their mistake.

The second is that slavery was never ever all right as far as one somewhat vital group of people were concerned. Who am I talking about? The Quakers? No, not them. Uh, oh yes, I remember! The slaves!

People in Africa did not weigh up their options in life and think that slavery was probably a reasonable career choice. Even though we are talking about an age in which living and working conditions for many Britons were pretty appalling, ordinary working class folk here had at least a handful of fundamental freedoms. Like being paid for work. Like not being put in chains. Like not being raped. Like being able to have relationships, families and so on without outside interference. Like being allowed to grow old. Life was tough, but life was ours.

The reason you put someone in chains is because they are not a passive victim; they do not want to experience what you are subjecting them too and they are otherwise likely to run away or defend themselves. This alone, in the absence of any of the accounts we have from slaves or former slaves, or our knowledge of slave rebellions, demonstrates that it was never all right.

However, one major legacy of the British Empire is the idea that those people don’t know any better. We were no less moral as human beings a few hundred years ago than we are today and as such, we had to justify moving in to other people’s countries in order to pinch their natural resources - a real bugger in those days, as you can hardly pass a spear off as a weapon of mass destruction. When it came to invading other European countries, this had always been argued in terms of defence or some claim involving our royal dynasties. When it came to countries several hundred thousand miles away, it became a little trickier.

At this point, race became really handy. We’re busy stealing people’s countries. Conveniently, they're all a different colour from most of us. Well, clearly these people are less intellectually sophisticated than us because they don't have guns. And although Africans were building pyramids whilst we were patting our backs at being able to make vague circles with random lumps of rock, none of these chaps is wearing a tie. Clearly, these people don’t really know their own minds. We’re doing them a favour, putting their labour to good use.

And so we start putting this in scientific and religious terms. Just as we did with women at the time, we used pseudo-scientific and religions concepts to explain how the present order of things as the natural one. But whilst women were cast as weak and silly but basically fluffy and harmless, the negro was cast as a dangerous creature, a moral, sexual and religious threat.

This particular fairy story was only written a few hundred years ago, and yet we're still struggling to dispose of it today. The trouble is the combination of this legacy and the legacy of inequality. As I'm always harping on about, folks in our society are very much wedded to the idea that bad things don't happen to good people, so when we see that the developing world, much of it our former colonies, are still, well, developing, we suspect that they're just not as Great as we are. And when we see problems in impoverished areas of the inner cities with a high black population, we tend to think that there must be something wrong with black people, as opposed to those particular people and the society in which they live.

And the greatest tradegy is that the same mentality allows us to excuse or apply moral relativism to the slavery which carries on both in the UK and elsewhere. Those people don't really know any better. They've got themselves into trouble. If they were really suffering, and they had their wits about them, well then surely they could get away and do something else?

Two important points about this post. The first is that I've use the first person plural in the vaguest of senses. It wasn't really us or we that did this stuff, but it is my society that carries the legacy I describe. The second is that the picture is much bigger than this, but I only know my own country.

The weirdest media coverage of the abolition anniversary was a radio play on Radio Four called Slavery... the Making Of, which you can listen to any time the next week. It starred Lenny Henry and Brian Blessed. No, I am serious. I am yet decided on whether this was immensely brave, or immensely silly. I'm thinking probably a bit of both.

Saturday, March 24, 2007

Ask no questions, hear no lies

In recent weeks there have been a few posts about being asked about your impairment by strangers, the ones that I can remember were by Bint Alshamsa at My Private Casbah and then Imfunnytoo wrote about it just last week. If anyone can remind me who else has written about this in the last month or so, please do so.

As I’m sure I’ve said before, I find it a terrific bore to talk about my condition as a pathology. I think this is partly due to my particular label, partly due to the fact that illness becomes an extraordinarily boring subject to those of us with it, at least after the initial wow, my body is complicated! phase (during which we may go into some detail without invitation, subject complete strangers to Powerpoint presentations and consider taking a degree in medicine in order to better understand ourselves and formulate a cure). However, why lay people you hardly know would be interested, I don't know.

Bint describes how in the American South, she doesn't feel uncomfortable about people asking, because folks there talk about anything. I found this interesting; Bint has cancer, which I guess everyone has heard of and understands the idea of. I imagine there are some uniquely troublesome reactions (my own Gran won't even say "the C word" out loud (or indeed the word cancer, he he)). But I wonder whether I would feel differently if I had a different label. As it is, for me, such conversations almost inevitably lead to
  1. Confusion about medical labels. “Isn’t that what Stephen Hawking has?” Uh no. There are many long words and acronyms in medicine, Stephen Hawking only has a small handful.

  2. Misplaced empathy. “Oh, I think I have a bit of that; I have all sorts of aches and pains and I’m tired all the time.” or "I know how you feel; I had a cold last month and I didn't feel like leaving the house for days."

  3. Overblown sympathy. "Oh my! That must be awful for you. I can't imagine how you cope. If I had that/ had to use a wheelchair/ couldn't go clubbing at the weeknd, I would kill myself!"

  4. An anecdote about someone they knew/ read about in the paper/ just invented who had this condition and died horribly/ never needed a wheelchair, in fact ran several marathons/ recovered completely through the power of North Tibetan Flatulence Therapy. Often this is combined with further confusion about medical labels.
And it’s so boring. The fact someone is subjecting me to this nonsense suggests we will never be friends. Some people with chronic illness feel it is useful to educate people about their particular condition, to raise awareness, but I soon came to the conclusion that the sort of people who ask don’t really want to understand. After all, most people I meet don't ask. Most people who get to know me don't ask. I can't recall a question from a close friend about my condition which wasn't framed with "I hope you don't mind me talking about this stuff, but..."

I’m not very good at telling people that it’s none of their business. In fact, I have never done that. Fortunately people do tend to ask the wrong questions. Questions such as

“So what’s wrong with you?” which is really asking for it, frankly.

“Well since you ask, I guess I’m a bit of a perfectionist, and I think sometimes people are intimidated by my intelligence and good looks. So, what’s wrong with you?”

Otherwise it is “So why are you in a wheelchair?” After all, nobody ever asks when I’m not using the wheelchair; when I behave differently people assume I have a temporary illness, ladies’ troubles or else am an eccentric.

This is met with the polite and perfectly accurate, “I have a lot of pain my legs which means I cannot walk very far.”

This is sometimes followed up by “Why is that?”

Which, in turn, is met with the polite and perfectly accurate, “Because my muscles don’t metabolise oxygen properly, which results in excessive lactic acid production.”

This is almost always where it ends. Most people either read that I’m not going to give, assume my condition is rare and complicated or else feel that it might get very technical if they question it any further.

While I'm here, anyone seriously interested in the study of social disability may be interested in reading this paper about the hierarchy of impairments that exists in the minds of both disabled and non-disabled people - something I have written about before and read about elsewhere, but only really seen it touched on in a rather vague and anecdotal manner in academic writing.

Friday, March 23, 2007

Everybody wants to dance with my baby

We had a lovely day yesterday when Rosie and Alexander came to visit. Alex spent a lot of time rolling about on our sofa, laughing, gurgling and attempting to pull his uncle's beard off. Rosie played on our drums and caused me some embarrassment when she opened the newly arrived copy of Shaggy Blog Stories at random and found two shocking spelling mistakes on a page I had proof-read. Oh the shame!

In the afternoon, Rosie, Alex and I went out for a drive and saw a deer in the forest. We decided we wanted a cup of coffee and having become rather lost, we ended up at a furniture shop which happened to have a rather nice restaurant. But honestly, if you use a wheelchair and feel you get a lot of uninvited attention; try putting a baby on your lap. There were gasps. "Oh how lovely!" they cry, "Isn't he gorgeous?!" The lady in the restaurant gave me too much change, and when I pointed this out she said, "Oh, but I was completely distracted!"

Really, I know I think Alexander is a darling but I'm allowed to; he's my nephew. Are other people like this towards all babies? There are babies all over the place; it must be exhausting for them.

Still, it was a great day. Very tiring, but worth it.

Wednesday, March 21, 2007

Nobody does it better, makes me feel sad for the rest

When I was small, I loved James Bond. I wanted to be James Bond. I watched the films, I read the books and I even went through a phase of wearing a black bow-tie, which is perhaps a little odd for an eight year old girl.

When I realised that I wasn't actually going to grow up to be a man (an illusion I had been under for some time), I looked to the women in the Bond films. Well, I say women, but these are Bond Girls, and are referred to as girls throughout the films. Perhaps because they behave like girls, like the girliest of girlie girls, even when they were supposed to be spies themselves or scientists or in other roles where you'd think they would need an ounce of common sense. Thus I went right off James Bond.

But watching Casino Royale last night (which is pretty good by the way), it occurs to me that there may still be a role in the world of Bond that I can still aspire to.

Let me just check the list now. I guess I need...

1. A name which sounds exotic, sinsiter or has the word gold somewhere in it. Well that's sorted; I am the Goldfish. I'm sure Shirley Bassey could sing a song about me over a graphic sequence involving naked ladies and revolvers for the opening titles.

2. Facial disfigurement, suggesting vanity is at the heart of my megalomania. Well, I have acne and while this isn't much to complain about, it is often a relatively minor disfigurement that marks the villain out. One gets the impression that, should any wealthy man wake up and notice a half decent zit on his nose, his soul would turn instantly to darkness.

3. An emasculating physical impairment rendering one unable to take Bond on in hand-to-hand combat. Yeah, I've got one of those. When you met Mr Le Shifty, the baddie in Casino Royale, you knew not to trust him because he had asthma.

4. An imposingly proportioned sidekick, who says little, has some martial arts training and preferably some sort of violent gimmick. Yup. Not sure about the gimmick though.

5. A hi-tech secret lair. Well, we have a wireless Internet connection and I'm sure I could quite happily conduct a life of super-villainy from this location and nobody would suspect a thing. I even have a mobile phone somewhere, but it doesn't have a SIM card.

6. At least one beautiful female lover with a saucy-sounding name who is prepared to betray me at the drop of a double-entendre. Hmm, I’ll have to work on that. The head of Scarborough Council is called Eileen Bosomworth, which I always considered a great name for a Bond Girl. As is Virginia Bottomley, come to think of it.

7. A deep-seated ambition to take over the world, destroy the world and/ or make a lot more money than I'll ever need. That's true actually. I know I go on a lot about liberty and equality, but really I'd much rather people just did what I told them. I'm sure the world would be a better place for it.

8. A good imagination for slow and elaborate ways with which I might dispose of my nemesis, preferably involving animals.
I reckon I can manage this. I could cover James Bond in peanut butter and set the squirrels on him. Oh dear, now I've got a mental picture of Daniel Craig covered in peanut butter. And squirrels. Oh dear.

9. A small army of anonymous henchmen prepared to give their lives for my cause despite the fact that none of them can hit a moving target, their supplied weapons jam frequently, and they often go to their deaths in a vaguely comical manner.
Now that might be a problem; I am currently rather short of henchmen. I wonder if I could recruit people through a reality television programme? My Queer Eye is how you know I'm a Bad Guy, or Celebrity Death Island. (There was Trigger Happy TV of course, but I actually quite liked that one).

Given that all stereotypes are necessarily misinformative and therefore undesirable, this has to be one of the least offensive commonplace representations of disability in film and fiction. These are chippy crips; rich and powerful, often geniuses, in fact. Okay, so there is the small matter of them being evil and dangerous, but at least they are being taken seriously. Better that than being sacharine tragic heroes or else simply absent from the picture altogether.

Of course, it's not just the Bond movies and when I think of it, there aren't many Bond villains with significant mobility impairments - although mean wheelies are a staple in action and spy movies. And I don't really get it. What is it about physical impairment which is shorthand for angelic victimhood in one context but deadly menace in another? Or is it simply the idea of power in the hands of those who are usually powerless - in the same way that wealthy and suceessful women are so frequently cast as super-bitches?

Amazingly enough, I couldn't find a list of disabled characters in Bond movies anywhere on-line. So I shall attempt to compile one - please add to it if you can think of any more. I will include those with facial scarring, but not Scaramanga's third nipple. I realise there are scars and scars; only some would result in social disability.

List of Bond Villains with Physical Impairments

Dr No (Doctor No) - double arms amputee, has bionic metal prosthetics, good for cracking nuts.
Tee Hee Johnson (Live and Let Die) - lost his arm to a aligator, has fancy metal replacement.
Jaws (Various) - has metal teeth, presumably a result of a tragic dental accident. Is also of a considerable height.
Oddjob (Goldfinger) - is non-verbal.
Whisper (Live and Let Die) - uh, speech impediment, possible respiratory illness.
Blofeld (Various) - wheelchair-user, sometimes with a facial scar.
Le Chiffre (Casino Royal) - asthma and facial scar, including a damaged tearduct which would weep blood.
Emilio Largo (Thunderball) - wears an eyepatch.
Scarpine (A View to A Kill) - facial scar.
Alex Trevelyan (Golden Eye) - facial burns.
Max Zorin (Tomorrow Never Dies) - facial scar.
Zao (Die Another Day) - facial scarring involving bits of metal imbedded in his skin.
Elektra King (The World is Not Enough) - disfigured ear.
Nick Nack (The Man with the Golden Gun) - dwarfism.
Renard (The World is Not Enough) - brain injury resulting in loss of taste, smell and experience of pain.
Mr Stamper (Tomorrow Never Dies) - neurological condition which reverses the experiences of pain and pleasure.

[The Three Blind Mice (Doctor No) - Assassins who pretended to be blind.]

Tuesday, March 20, 2007

Other Stories and Other Stories by Ali Smith.

crossposted at Blogging Bookworms

Occassionally, I get anonymous packages in the post. You may remember Albert, the cactus? He's still going strong, thanks for asking. Anyway, last week's mystery package from my oh-so-secret admirer* contained a book of short stories about sex and death, which is probably a favourite theme for books sent anonymously.

Actually, these stories were more about love and death.
We believed in the superiority of feeling, and we believed there had to be some superiority in everything we felt since we felt it so strongly in the face of such taken-for-granted shame.
I don't generally like short stories, particularly ones that clever people describe as postmodern (I actually saw Ali Smith described as Late Postmodern, which made me titter).

Short stories frustrate me because usually you're not given enough of characters to get really invested in them - and if you do, by the time you do, the story is over. Plus there are only so many things you can do with a few thousand words. Horror and ghost stories work best in this format because although the same sort of thing happens every time, the emotional response is so strong you don't really care. How many times have you read the one where Peter encounters Paul, who gives him the willies, and later Peter learns that Paul is a ghost? I've got shivers down my spine thinking about it (really I have; powers of imagination being much better than powers of description).

Postmodern short stories frustrate me even more because they break so many rules that they're often not even stories in a proper sense; they often lack a beginning, a middle and an end. They are mere vignettes and as such, well, they are just so much wallpaper.

The fact that Ali Smith dispels all these prejudices is just one way in which I find her writing a terrific relief. She writes about women the way that I know women, real women, women as human beings as opposed to heroines, or creatures preoccupied by shoes and scales and men. She writes very movingly about the love between women, not just sexual love which she handles beautifully, but every flavour of affection, of friendship, sympathy and kindness between women.

Every story in the book features something about death or loss of one sort of another, but not one manages to be even slightly morbid. Okay, one does, a bit. But mostly the darkness is woven into its rightful place as part of life's rich tapestry.
I can still see our heads together, our eyes and our mouths, intent and pretty and serious as stoats, as we thought things as innocent and perilous as, for instance, that suicide must be a good thing, at the very least a truly romantic thing, something all truly romantic people would do, since people so clearly felt so much when they did it.
Smith plays with grammar from time to time, but she takes it in hand rather than murdering it with a pitchfork and dancing on its grave. She moves fluently between tenses and grammatical persons, often within the same narrative. And there is no fluff; Smith is supposedly literary, but this was a doddle of a read. Her writing is as digestible as it is delicious, which is a rare thing indeed.

Get the impression I generally liked this book? I did. Generally.

* Concerned readers may need to know that through a pain-staking process of ellimination (I'm sure someone mentioned Ali Smith to me recently - it'll probably be them), I did eventually work out who had sent the book. Coincidentally, the same person who had sent the cactus.

Monday, March 19, 2007

Interview Me Meme

This was a rather dangerous meme but it had to be done because it was the wonderful Sage.

The Rules
: Leave me a comment saying, "Interview me."I respond by asking you five personal questions so I can get to know you better. If I already know you well, expect the questions may be a little more intimate! You WILL update your journal/bloggy thing/whatever with the answers to the questions.You will include this explanation and an offer to interview someone else in the post.When others comment asking to be interviewed, you will ask them five questions.

Sage asked me...

1. Hedwig and the Angry Inch is my most favourite movie because it makes me feel normal when I watch it. I feel like I belong in this world a bit more whenever I see it. What film or book or song gives you this feeling the most.

Hewig comes pretty high up my own list. Actually, I can think of lots of films, books and songs that do this for me a bit, so I'm going to have to choose just one, about which I may change my mind later on...

Okay, the song Tribute by Tenacious D.

Every now and again I am struck with a tremendous cynicism; this feeling that very much of what everyone says and does is complete and utter bullshit. And I could write a lengthy passage about this feeling, but it would probably sound like completely and utter bullshit. In any case, this song contains my desired epitaph:

This is not the greatest song in the world; no, this is just a tribute.

Really, that's got to be the best any reasonable person can aspire to, even if everyone else says otherwise and thinks this is a tremendous joke. Which of course it is, but it is also true. And it is a great song.

2. Do you think blogging, pouring your thoughts out for others to comment on, has had an effect on your personal growth? Explain.

Not sure about personal growth, but I find it very useful. I find it very useful to simply get stuff out of my system, which is the main reason I blog. And with readers and folks who comment, well there's some point to it; I'm not just offloading onto a page to screw up and throw in the bin. Someone will read it, hopefully someone will be interested or find it useful, or something.

But I also find that framing ideas and experiences for other's eyes often allows me to unpack my head to some extent; the act of explaining one's own life can be very illuminating. Often when I'm feeling down, the process of writing about it makes me realise that the situation is not nearly so bad as I imagined. Tempting to put another pretentious comment about mirrors in here...

That's a personal answer, of course; it can't be the case for all bloggers. In fact I reckon folks whose personal blogs get read by massive readerships are at a distinct disadvantage; if the depressive musings of a broken-hearted dreamer brings in an enormous audience, then one is pretty much obliged to continue one's depressive musings indefinitely; personal growth is liable to lose one's audience base. Similarly with the big political bloggers; real people change their minds, but it must be far more difficult to do so if it means contradicting with the hundreds of people you have hanging on your every word.

3. What surprised you most about having a disability from what you expected to be the case pre-diagnosis?

Any kind of crisis or dramatic change in life brings out the best and the worst in people. And whatever kind of hackneyed truism that is, the reality can be very surprising. It was surprisng - is surprising - the way some people vanish completely out of your life when things aren't going so well, the way others spectacularly fail to apply any tact or imagination to your situation. And it is equally surprising how much imagination, empathy, love and loyalty that other people - not always the people you'd expect - can demonstrate when the bad weather hits.

And of course, you find the same surprises within yourself; strengths and weaknessness which may have remained undiscovered otherwise.

This isn't disability-specific of course, but some of the disability related stuff can be quite dramatic. A very obvious and lazy example is the completely different way that some people treat you simply by virtue of sitting down in a chair with wheels attached to it. Like you disappeared, or else suddenly drew a spotlight, your brain fell out or you lost a digit off your age. I had the notion that wheelchair-users were patronised, but it is still shocking to me, how it can be. And yet other people are just fine, better than fine; they not only treat you as they would anyone else but they become instinctively aware of your physical reality as being chair shaped; they never forget about a step or the fact you're low down.

So, it's a rather vague answer, I know, but basically the different ways different people react in a crisis. Can be staggering.

On a brief but irresistable note of pedantry, I personally wouldn't I have a disability.

4. You seem very well-read. What's your educational background? Was school a primary source, or something else?

Why, thank you. Alas, I didn’t finish high school and I haven’t got many formal qualifications whatsoever, although I did try to get a degree. Not in some noble autodidactic attempt to better myself, but because I was acutely aware of how extraordinarily unqualified I was (uh, am). But I did get quite a bit of the learning in, just not the certificates - and it was just illness that got in my way.

I don’t regard myself as particularly well read though. I think perhaps, I'm reasonably good at storing a lot of the useless information I do come across and if a subject is of any interest, I generally want to understand it as well as I possibly can.

5. Would you ever consider moving far from home (like to Canada!) for a job offer or the ever-changing weather or any other reason? Why or why not?

I wouldn’t rule it out because life sometimes turns in unexpected directions, but it doesn’t have much appeal at the moment. I really do love my country. I love the way that despite the homogenisation of a lot of our town and city centres, there is still this tremendous sense of place.

For example, as the crow flies, we are just fifty miles north of London and yet I can impersonate three different accents which can be heard between here and the edge of the city. There are still characters like my Gran whose accent and bizarre grammar render her speech barely legible to people from other parts of the country. And whilst it can get a bit nasty from time to time, I quite like the subtle regional tensions that exist between neighbouring towns and counties, North and South, England, Wales and Scotland. Northern Ireland too, but that's everso slightly more complicated...

And then there's our everpresent history. Here, in our very ordinary village we have a pile of rocks alleged to have been a castle which was destroyed by Oliver Cromwell. And this place was one of the destinations and settling places for the Polish refugees during the Second World War. We're ten minutes drive from Elveden Forest where Elizabeth I was hunting when news of her succession came through (presumably they had a portable fax machine - they didn't have text-messages back then.). Also the place where the Maharaja Dalip Singh retired to after the Brits generously annexed the Punjab in order to teach everyone to play Cricket.

Ten minutes in another direction takes us to Grimes Graves - five thousand year old flint mines (the Saxons assumed they were burial chambers, thus the name). These look pretty funky on Google Earth or if you go to Google Maps, find the place and click on Satelite.

Twenty minutes away is Thetford, which was Boudica's capital from which she took on the Romans (Roman treasure has been found just down the road from here). This is also a weird pocket of East Anglia with a huge Portugese immigrant population, with Portugese shops and cafes. Then a bit further away we have places like Newmarket and Cambridge, of course - places whose history people all over the world know about. And this is just this little place in the what is alleged to be the most boring county in England, it's not exactly remarkable. Everywhere you go in these isles, you are surrounded by the shadows of significant events.

Not all good events, by any means, but it's not about pride. And it's not about the fatherland or anything ridiculous like that. It's just that in somewhere as vast as Canada, where even the most ancient history is pretty well spaced out, well I imagine I might feel somewhat lost.

Friday, March 16, 2007

The Goldfish Guide to Self-Hypnosis for Pain Management

My single experience of hypnosis proper was a disaster. It was one of the last therapies I allowed myself to be coerced into doing, but I turned up, determined to make the best of it and keep an open mind. This wasn’t some bizarre attempt to hypnotise me well, I hasten to add, but to help me cope better. And it was true to say that I wasn’t coping at all well at the time. It was the summer of the long sleeves.

Unfortunately, despite my good intentions, I spent half an hour lying still, trying to suppress the most horrendous fit of giggles. It all started when the chap who was hypnotised before me emerged into the waiting room and declared

“Everyday, in every way, I’m getting better and better!”

Really. I couldn’t take anything seriously after that. The hypnotist played a weird tuneless soundtrack, like someone was aimlessly fiddling with all the knobs on an early synthesiser. He told me, in a low slow voice, that I felt perfectly free of pain – when of course, I didn’t and wouldn’t have done even if I hadn’t been tensing almost every muscle in my body in my attempts to suppress laughter.

Self-hypnosis is something different entirely. This is something I do which helps a lot. It seems very personal to me, and it strikes me that not having my body and my mind, I’m not sure whether this information could be useful to anybody. However, clearly some folks who read this are in pain (physically, not just cringing at my prose) and on the off-chance it might be useful to somebody, somewhere, in some way, I am taking the rather brave step of writing a bit about it.

Self-Deceit and Honest

It took me ages to realise this was possible. I felt that if I could not make my body relax just by trying to relax because I was so unwell and uncomfortable, then it simply wasn't possible. However, we know that the brain is capable of a great degree of self-deceit; books, films and plays would not be entertaining if we were not able to suspend our disbelief, music would not be able to move us, excite or relax us if we were not able to get lost in it.

It is just a matter of playing little tricks with one's own imagination. Finding one's own psychological buttons and pressing them. Of course I don't know how easy or hard that is for other people because we all have varying imaginative capacities, but still.

It is very important to point out that despite all the wonderful mind over matter stories one reads about walking on hot coals and enduring surgery without anaesthetic, one must be reasonable with oneself. If you live with chronic pain, then it seems extremely unlikely that you are going to be able to convince yourself that you are not in pain any more. One cannot lie to oneself. In fact, attempting to do so is likely to break the spell and stop you getting any benefit from th exercise.

This is why conventional hypnosis, relaxation tapes and the like often fail for people with chronic pain and illness; if a voice is telling you something which contradicts your physical experience, you lose your faith in anything else it says.

Although with practice this can be a really useful technique, it can be jolly hard to get the hang of at first. The thing is to play with it, experiment and not have too high expectations - nor to imagine that if you don't feel wonderful the first time, it's never going to help.

Winding Down

The first thing you need to do is to begin enter a state of relaxation. There are lots of different ways of doing this. Personally, I have significant problems with concentration and prefer to go through several routines rather quickly than doing one really slowly - which is probably what others would suggest you do. I can't; my mind wanders.

I'm going to give some examples of what I do, I'm sure there are many variations that can be invented (or read about elsewhere).

Knackering the eyes. Forgive the word knackering, but I feel very silly writing about any of this and can't think of the word I mean. Thing is about the eyes and relaxation is that if you simply close them, your brain is likely to compensate for the sudden absence of visual stimulation. So I sometimes
  • Focus on one place on the ceiling and very slowly close my eyes counting from ten down to one. If it is dark, I look at a luminous star (I presume everyone has luminous stars on their ceiling, as pretty much I have all my life).
  • I turn my eyeballs to face upwards, then close my eyes without moving the gaze of my eyeballs. I then turn my eyeballs downwards, then open my eyes wide without moving the gaze of my eyeballs. You may need to read that twice to understand what I mean; it's actually quite tricky; your eyes want to follow your eyelids as you close or open them, and to resist this wears them out to a point where your comfortable keeping them closed pretty quickly.
Relaxing the body. The point about this is that it is not going to be 100% if bits of you are hurting - they are still going to hurt, and they are not going to magically relax. The idea is to get yourself as comfortable as possible. For example,
  • Starting at the tips of your toes, imagine a big thick heavy blanket being slowly laid over you; first your toes warm up, then your foot, your heel, your ankle etc., each getting warm and thus relaxing as the blanket falls onto them.
  • Starting at your scalp, concentrate on the various surfaces on your body working downwards. Think about how they feel, the fact they are still and relaxed etc. - this works quite well when you hurt on the inside. Not so well if you've got an itch.
  • Imagine a warm golden energy coming up your body as your breath in, and then a cool white energy going out your body as you breath out - yes, I know, I'm beginning to sound a bit flaky, but these are just examples, and relate to my own buttons, not necessarily yours.
Going down into a deep dark place. This is where the imaginary exercise begins in earnst. Some people may find it more relaxing to go up into a bright light place, where they get lighter as they go, but not this Morlock. I prefer heading downwards, and the further down I go, the darker and warmer it gets, the heavier I feel and the more relaxed I am. It is important to think about all the sensory stuff; to merely visualise isn't nearly enough. I do this in a number of ways, for example, imagining that I am
  • Taking a long and winding staircase downwards. Counting the stairs backwards helps, although from not too high a number (I like twenty-four myself). There might be doorways off to the side which one may chose to go through, but I'm going right to the bottom.
  • Taking a lift. The lift has a big comfy sofa for when standing hurts even in my imagination. I watch the lights indicate the floors as the lift descends, and again, it gets darker and I feel heavier as it goes down.
  • Gliding down into the darkness, sometimes in the basket of a hot air balloon, sometimes wearing a parachute, sometimes using a hand-glider. This is a very gentle, but inevitable descent and there is always a very soft welcoming landing.
Disposing of Troubles

My favourite way of disposing of niggling thoughts is probably very personal to me, and is going to sound rather silly. The niggling thoughts are represented by white mice which scurry around my feet. I can't move on whilst they are there because I am afraid of standing on them.

After I've gone to the deep dark place, I'm standing in a stairwell where there is a lampost. Attached to the lamppost is a bunch of red helium-filled balloons. One by one I take a balloon, tie the tail of a white mouse to the end of its string and release it into the stairwell. I then watch as the white mouse floats up and eventually completely out of sight.

Yes, yes, this is a little odd but that works very well for me, and I am a terrific worrier.

For more troublesome stuff, I tend to produce some object to represent them which I put in boxes and put the boxes in cupboards, and padlock the cupboards and so on. But for the Lurgy, which is the big one, I have to be more careful. Thing is, my niggles are just niggles, just white mice. And almost everything I worry about is pointless - even when some crisis is going on, worrying about it never did any good. So it is relatively easy to make that stuff disappear. Not so the Lurgy, which is a big part of my life.

The Lurgy is represented by the same physical object which I just cannot share right now for fear of freaking you out completely. However it is quite a fragile object which I must treat with care. I lay it down in a box with cushioned lining, carefully close and lock the box. The box is very ornately decorated for some reason, I guess because the Lurgy is precious - well not precious, but alas, must be treated with the utmost of respect. Then I lower it into a hole in the ground which has conveniently been dug. I then shovel earth on top and finish burying the box.

However, when I finish the session, I always dig the box up, take out my Lurgy and take it with me back up to the surface. Just so I know I haven't been fooling myself.

The Happy Place

He he he. Sorry, this is all very silly, isn't it? No wonder you haven't ever done this yourself; you have too much self-respect to conceive of such things in your mind. I have so little self-respect I'm prepared to write about them to the whole world (well, you, at least).

I go through a door and find myself somewhere which is very beautiful and comfortable. My own paradise is a woodland where the birds are singing, sun beams through the leaves and branches, the ground is carpetted in velvetty moss and gravity doesn't really exist - I can swim up above the treetops where it is sunny and warm and I can swim down into the Earth where it is cool and dark. I frequently find somewhere to lie down and simply fall asleep, in which case I will fall asleep for real.

If I don't fall asleep, I have a nice time here for a while, until I think I want to get on and do something else. At this point, I always collect my Lurgy and go back whichever way I came - up stairs or whatever, even if I go up much quicker than I came down. I feel I have to do this in order to wake up properly, or else I tend to feel disorientated.

And when this is all over, I always feel better. It feels like I have had some respite, a break. And usually the mere fact of having had my body properly relaxed for a period of time, I usually feel physically more comfortable.

Thursday, March 15, 2007

Are you sitting comfortably?

Could use some advice, please. We've decided that we ought to start eating at the table. Our kitchen has enough room for a table and there's nowhere else for more than three people to sit, let alone eat comfortably, so we need to have a dining table when people come round - my parents are coming for breakfast on Mother's Day and we currently have a picnic bench in the kitchen for this purpose. We didn't have a dining table at the old place, as we didn't have room for one and anyway, people don't really do that sort of thing oop North.

An ordinary looking dining chairThe trouble is that we need comfortable chairs, chairs that I would be okay to sit on for moor than a few minutes. And dining chairs are not really designed for comfort. This chair, for example, is perfectly nice to look at, but actually makes me feel queasy just thinking about sitting on it long enough to eat a meal - I'd rather sit at the picnic bench with no support at all. My back hurts a lot today, but that's kind of the point.

A rather supportive wicker chairLast time we did have a dining table, we sat in wicker chairs something like this one on the right. Indeed, they may have even been the same chairs, although we made cushions for them. They got a lot of use and after a period of literally being held together with string, they eventually fell apart.

With shallow cushions, this is a pretty comfortable chair which it is difficult to fall off, but alas, it takes too much room.

A chair in the shape of an oyster shellSpace is an issue (okay, so I got somewhat distracted, didn't I?), but if I'm going to be able to sit in a chair for some time, then I need something so that I'm not spending half my energy trying to balance on the thing and not keel over to the side. Not necessarily, arms, but something.

The support I need to the back is more difficult to explain, as folks with different back issues are likely to have different criteria. My issue is muscles; I need to be able to sit upright whilst using as few muscles, to as little extent, as possible.

I keep finding very comfortable looking chairs which are simply impractical, and many practical chairs which look a little like torture equipment to me.

Anyone got any ideas? There is a budget of course, but right now I'm looking for an idea of what we need; having established that, we can then try and find the cheapest way of getting it.

Wednesday, March 14, 2007

Left, Right and Crippled

One thing I hate about politics is the way that so many people choose to draw a chalk line on the floor between themselves and their opponents and say, “You and I cannot agree.”

Ideas around Left and Right Wing politics represent one area that this happens. Left and Right in politics has meant different things at different times since the origin of the terms in revolutinonary France. But by the twenty-first century, in British politics, the Left and Right of politics had come to represent the inevitable conflict between two interests, both of which must be accommodated to run any sort of democracy. In absolutely basic economic terms, these interests might be labelled the interests of the collective (Left) and the interests peculiar to the individual (Right). The individual may be any political or economic entity; a person, a household, a business or even an entire country.

Both of these interests are important. Again, in very simplistic terms, ignore one interest and you’re left with something like Feudalism, ignore the other and you’re left with Communism. Most people (now) acknowledge that neither of these systems hold much benefit for either the collective or the individual. So we need to be somewhere round about the middle and there is always going to be some debate about exactly where along the spectrum our priorities must be; more with the collective good or more with the individual.

This is not a relativist argument. There must be some optimum point of balance, but it is likely to shift about a fair amount with a changing world and has to be constantly revised. Thus democracy. A rather crucial premise of democracy is that the best way of doing things will change in time.

The wonderful (terrible) thing about the current UK New Labour government is that people hate it for being too Left Wing or too Right Wing depending on their own political viewpoint; New Labour are left-wing bastards and also right-wing bastards; which is a neat trick. However, this particular government has done something a little different from previous ones, working on the basic principle of whatever sells, rejecting this old-fashioned model. This makes New Labour arguably less hypocritical than previous governments because they lack any principles which can be betrayed.

Anyway, there are some things that Left and Right do not mean – at least not in British politics up until now. It is, for example, perfectly possible to be a Right-Wing liberal or a Left-Wing authoritarian. There is no magic correlation between religiosity and Right-Wing politics, or environmentalism and Left-Wing politics and so on.

And the point I am concerned with today is the fact that egalitarianism can be compatible with both Left and Right. It really frustrates me when people on the Left make Right Wing synonymous with oppression, and when those on the Right assume that equality is none of their business.

I do not merely believe in equality because I think it is a nice idea, but because I think it is the best way of going about things, which benefits everybody. And there are two quite different ways in which this is the case. I'll use the example of disabled people, although similar goes for other disadvantaged groups:
As an individual, I want to get as much out of life as possible. I want as much freedom as possible, to do what I like with my life and to contribute to the society in which I live.

As a collective, the more people allowed to contribute – financially and in every other sense, the better. The greater variety of people involved in society, the greater variety of skills, talents and perspectives can be brought to the table when we’re working out the best way of going about things.
And there are two different perspectives in opposition to this:
As an individual, I want the freedom to do what I like with my money and resources; I do not wish to use them to support other people, I do not wish to be told who to employ or how to run my business. If I have unfair advantages over other people, then so be it; I enjoy these advantages and do not wish to give them up.

As a collective, we do not wish to be burdened with supporting people who do not make a tangible financial contribution to society. If they cannot come to the table without the collective needing to change in some way, then they cannot come to the table at all.
You may notice that it was basically Left-Wing language that was used to support the T4 program; these people are too much of a strain on the collective. This despite the fact that within the history of British politics at least, it is generally Left-Wing administrations who have made the bolder steps towards disability equality (as well as sexual and racial equality).

This is because it is usually those on the Right who are concerned about the amount of tax paid by individuals, and perhaps most importantly, the amount of legislation and financial obligations forced on individual businesses and organisations. It can be costly, in the short-term, to make the necessarily changes, and these costs are felt far greater by individual entities than the collective as a whole.

A Right Wing Egalitarian is far more likely to attempt to empower the individuals who are experiencing disadvantage; through education, training, access to equipment, increased personal freedom (e.g. more flexible benefit rules) etc.. Which would be nice, but would be likely to have very limited results if businesses and organisations were not also obliged to change.

However, the fact is that from whatever political perspective, the more unequal our treatment, the more burdensome we are on both individual interests and the collective. And everyone loses out.

Please note I have only capitalised Left and Right in order to make it clear I mean Left and Right in that way. I don't know whether that is grammatically correct.

Saturday, March 10, 2007

Getadelt wird wer Schmerzen kennt

(Sorry, it's Rammstein; I'm not proud)

A couple of weeks ago, when I wrote about the power of knowledge and chronic pain, several commenters raised the difficulty of getting other people to understand. I was kind of surprised that the comments took this turn, when that wasn't what I had been writing about. I was reminded of how much this sometimes matters to us.

I suppose I am fortunate in the fact that I don't often have to explain myself. This is partly my personal circumstances, partly the fact I have a reasonable sense, acquired over the years, of the minimum amount of information any given person or authority needs to know about my health. When the dentist looked at my notes and asked what the Dreaded Lurgy was, I said simply that I had a weak immune system and am very sensitive to the side-effects of any drugs; the dentist doesn't need to know about my pain or fatigue. (I got that bit right but, having been complimented on what good teeth I had, have since come to regret the line, "All the better to eat you with.")

Another point is that, to me, it doesn't really matter if people don't know what my life is like so long as they don't interfere with it. For a long time, I worried terribly about what other people might think, whether people would doubt symptoms they could see no evidence of (oh for a decent rash!). This tended to result in me either attempting to pass, to pretend I wasn't ill, or else giving people more information than they needed or wanted about my condition.

I suppose also, a part of me wanted sympathy; a part of me wanted Aaagh!!! tattooed across my forehead. But I generally find that when people feel sorry for me, they end up detracting from the things I do value about my existence. When we told everybody about our marriage, I received one card which said something along the lines that the sender hoped that one day my health would fully recover so that [...] and I could be truly happy together. Which jarred a little. Okay, so I have this one big stinky thing in my life, but the rest of it is fine. Honest - I am more than happy to be alive - please put that syringe down now, thanks all the same.

Anyway, there are a very small group of professionals who actually need to know what's going on with my medically and the effect that has on my functional capacities. Again, you learn the language to use when dealing with these people, the precise information they need, the gentle tack to take if they get the wrong end of the stick.

But nobody else who matters is going to question my account of things; getting it is an unspoken but entirely necessary condition of giving a shit about me.

Getting it isn't about knowledge or understanding, but simply respect. A friend doesn't need to know squat about my medical condition or feel sorry for me in any way. A friend doesn't need to have some psychic gauge of how I am feeling or how much pain I may be in. Getting it is simply recognising that I speak my truth; that if I say that I am experiencing X, cannot do Y, or that I need to do Z, then that is just the way it is.

After all, even if I was wrong - if I was faking, or exaggerating, or losing perspective on the situation - what could possibly be gained from an argument? People who really care about me are not going to start challenging me or applying pressure unless they have good reason to think I'm in real trouble, really not looking after myself, or putting myself in danger in some way. If they think I'm going to lie about or exploit my health situation, then they have a pretty low opinion of me to start with - or else have such tremendous difficulty dealing with illness that they've gone into denial. The latter does sometimes occur in families, of course, as family members can be terribly protective without being particularly groovy with the whole respect thing.

On the subject of families, I'll turn this around for quite a good example. I remember a bad day last summer when late in the afternoon, I was woken by a phonecall from Rosie. I don't always answer the phone on bad days, but if it wakes me up, I tend to answer it before I'm awake enough to consider doing otherwise. Here is a picture of my sister and the lovely Alexander (any excuse).

It was during Rosie's last few days at work before maternity leave and she was talking to me as she was driving home. She was suffering; the fatigue of pregnancy was taking it's toll, her shape and general discomfort was disturbing her sleep and she'd been struggling at work, standing in front of a class of moody teenagers trying to draw some harmony out of them. She was now driving along the motorway and was hoping to mow the lawn when she got home. But she was so knackered, she couldn't believe it.

It was completely natural for the thought that passed through my head to pass through my head, especially as I was feeling extraordinarily grim. However, I would have had to be a complete and utter arsehole to turn around and say, "Yeah, well I've spent the day in bed, in pretty terrific pain and there's very little hope of me mowing a lawn any time this decade."

Because I have no idea how other people are feeling and I certainly do not have a monopoly on feeling uncomfortable. Rosie was tired and achy, and she wasn't used to being tired and achy, and she'd had to stand up in front of high school students all day and drive home along the motorway; two things I would not be able to do even if I became completely well tomorrow. All I had to do was make it to the bathroom every time I needed to pee; I had had a much easier day, in many ways.

But I'm being honest about this because I do have to check myself. Sometimes it does annoy me when healthy people complain about how tired they are or how much they are suffering with something when they are able to carry on a relatively active life - just as it annoys me when relatively wealthy people complain about how impoverished they are whilst engaged in some project that my budget could never touch.

However, if I respect these people, then it is not my place to judge. I do not have their life, I do not have their experience. And if I care about someone, then it is my responsibility to try to understand how it might be for them and empathise with them; if I didn't have the imaginative powers to do so, I wouldn't have many friends whose life didn't closely resemble my own. Since I don't know anybody whose life closely resembles my own, I guess I wouldn't have any friends.

But I imagine this is the sort of thing which is happening when people cast doubt over chronic pain and illness; people become very precious about their own troubles. After all, the less that other people get by with, the more you ought to be making of what you have - people simply don't like the idea that they have it better than other people, even though all of us have it better than someone. Personally I think I have it better than most of the people I know in some ways, even if they have it better than me in other ways.

I guess people who cast doubt over our experience of chronic pain and illness haven't come to terms with this yet.

Oops, just noticed the time...

Thursday, March 08, 2007

Sexism Makes Me Sick: Gender and Mental Ill Health.

For Blog Against Sexism Day.

Since the birth of psychiatric medicine, gender has played a vital role in how we get sick, who is determined to be sick and how sickness is treated. The presence of any mental illness is, after all, determined by experiences and behaviours that are markedly different from what is considered normal or healthy. Perceptions of mental ill health are therefore far more prone to cultural influence than perceptions of physical ill health, because normal varies between cultures and those experiences and behaviours that are considered normal or healthy for a man differ from those experiences and behaviours considered normal or healthy for a woman.

As psychiatry has matured, there is a growing recognition that individual differences only need labelling and dealing with where someone’s experiences or behaviour are effecting or endangering their own wellbeing. You don’t need to have surgery on an extra large left ear lobe unless it causes you significant distress and you don’t need to take drugs to suppress the desire to wear a top hat in the bath. You can be different without being unwell. And I like my top hat; it keeps the soap fairies out of my hair.

However, our culture and the medicine it influences still maintains biased ideas about normality and gender. Earlier on, the situation was disastrous for women. Following the agricultural revolution, it became viable and therefore fashionable for an entire class of British women to be more idle than they had ever been before. At the same time, you have the beginnings of the boarding school system, which took boys out of the family home, and meant that girls and boys were brought up and educated seperately and in an entirely different manner. Upper-class men and women became more different than they had been in recent centuries and as often happens with gender, these culturally-constructed differences were very quickly seen as innate.

In many ways, femininity itself was (and still is) considered to be a state of illness; the much-envied life-giving womb being condemned as a very dangerous organ indeed. Women in the late eighteenth and nineteenth centuries were not felt to be mentally competent, they were considered physically and mentally fragile and as such, those who could afford to lived in conditions which positively promoted physical and mental fragility; physical exercise was discouraged, education and even reading was considered potentially dangerous to their tiny minds and there was very little to do. The first sign of deviation from this very passive gender role could be assumed to be hysteria or even nymphomania and responded to with medical intervention

However, women are still seen as innately emotionally fragile and our behaviours are still pathologised. We are brought up to pathologise our own behaviour; to question the reasonableness of our own reactions and to anticipate mental ill health. Not the more complex conditions like Bipolar Disorder or Schizophrenia, but Depression, Stress and Anxiety.

Fed up with your job? Unhappy in your relationship? Feel like you’re going mad? You probably are. Go to the doctor. Get some pills. The problem is you, not the life you happen to live.

Women remain in a position where we are more vulnerable to the triggers of mental ill health than men. Women are far more likely to live in poverty, to have to work two jobs or have unstable incomes. Women are far more likely to be bringing up children on our own. Women are more likely to experience sexual assault or systematic violence at the hands of a loved-one. Many of those women who do get an excellent education and enter good careers continue to come up against limited opportunities.

Idealistic presentation of love, marriage and/ or motherhood as providing total uncomplicated fulfilment for women sets us up for a fall. Men have long been taught – and have had far more power - to make their own happiness. Women are still taught to expect to have happiness arrive on their doorstep. When it doesn’t, instead of being encouraged to go looking for it, out in the world or within ourselves, we assume ourselves to be unwell and we are treated accordingly.

Just recently I was talking to a friend about a couple we both know whose marriage is on the rocks. The husband has a mental illness. This label followed a lengthy diagnostic process to eliminate every possible physical cause for his largely non-physical symptoms. I have never heard of a woman who needed more than present with insomnia, fatigue and low spirits before being told she was depressed, and almost every woman I know with a chronic physical illness of any kind has had it suggested that her physical symptoms are psychological in origin at some point.

The husband’s condition doesn’t look easy to live with. He can be extraordinarily absent-minded, bad-tempered and is often rather disconnected from events going on around him. The wife finds this all extremely frustrating and is not behaving with sympathy.

My friend suggested that she is most of the problem and should herself go on anti-depressants to help her cope and behave in a more reasonable manner.

“I don’t think she’s depressed,” I said. “I don’t see anything which suggests she is depressed.”

“She keeps snapping at him. She keeps having a go.”

I shrugged. “So she’s angry. She’s not ill.”

“But he is under a lot of stress. It isn’t fair.”

“She might be behaving unreasonably, but that doesn’t mean she has an illness.”

Certainly, there are unreasonable behaviours which are sanctioned and condemned for either gender. There are certain behavioural reactions which remain unacceptible in men, such as crying in public or spending a lot of money on high-heeled shoes. In all seriousness, gender does make men ill too; it exerts very particular and unreasonable pressures on them, attaches far greater stigma to certain experiences (like being the victim of sexual or domestic violence) and makes it far more difficult for them to seek help and to get help when it is sought. Mental ill health is probably underdiagnosed in men, and it carries a much greater stigma where it is recognised.

Conversely, women need to do far less to have their mental health speculated upon. A wife infuriated with her infuriating husband, for example. Women are not allowed to be angry, really angry. It’s unseemly. Women are supposed to look after themselves for the sake of other people; to look nice for the sake of lovers, to keep healthy for the sake of family and so on. Women therefore meet far more disapproval when we drink in excess, take recreational drugs, drive fast or vent our frustrations through casual sex or aggressive behaviour. This is why we are far more likely to stop eating, self-harm or attempt suicide (in italics because there are varying levels of earnest); we are more likely to turn our violent frustrations on ourselves. And self-harm with blades, burns and bruises is considered very much more serious than the more commonly masculine self-harm through large quantities of drink and drugs or general self-neglect.

Once again, I have got a long way down a rambling post before completely losing my bearings and struggling to wind up in a succinct manner. I didn't even get as far as saying anything about women within the psychiatric system. Suffice to say that sexism stinks. So there.

Tuesday, March 06, 2007

A rose by any other name is a kind of pinky red

The most fun thing about decorating projects is the language used to advertise products and services. After all, most of us are ordinary people living in ordinary homes. Most of us are neither artists nor artisans, most of us are working with fairly unyielding budgets and practical limitations. It fascinates me with places like Ikea that draw your attention to really original funky pieces of design only to sell you the very ordinary and inoffensive bits and pieces which actually fit in your home.

A made-up paint chartOf course, advertisers don’t want to remind you of the reality of the situation. They want you to think that this is a great opportunity for self-expression, that you are buying into an image, a lifestyle. The very word lifestyle has shifted in meaning from the style in which you live your life to the style of the surfaces upon which you live your life. A new language of magnificent hyperbole has grown up around this.

And it is so very seductive; here we are, patching up rented accomodation on somebody else's budget and even we are thinking, "Are these carpet tiles really us?"

My absolute favourite is the paint colours. In one colour chart this week (pretty sure it was Crown paint) I found a colour called Utopia. I’d like you to take a minute and consider what colour you think Utopia might have been. What do you reckon?

Beige. Really. The colour of farmyard mud that's dried on the chassis of a tractor.

But they do have this tremendous problem as, as I say, most people live in ordinary homes. For a lot of people, neutral colours are the most safe and practical option. Yet the illusion of choice is a seller, so you have to give them lots of shades of much of a muchness; Barley White, Magnolia, Buttermilk, Ivory. My sister once had to buy a tin of paint to patch up the wall of her rented house. She went to the DIY shop and asked for a tin of County Cream. The assistant looked this up on the database and insisted that there was no such colour. Then she pointed out that there was an O in County.

Another made-up paint chartI like to go through the colour charts and make up my own names, especially for those colours which, though not unpleasant (not sure a colour can be unpleasant by itself), would certainly have an unpleasant effect if you had entirely rooms painted in that colour. She says, writing from a room painted in Ferrari Red (actually, there's a tin in the loft and it is Summer Pudding, but to me it is Ferrari Red, or possibly Scarlet Lake going off the corresponding Karisma pencil colour). But the red is quite liveable now we have furniture in here. Honest.

Anyway, my favourite example of decorating hyperbole this week though is not a paint colour, but a little sentence in an otherwise innocent, entirely sensible article. They’re not even trying to sell anything, it is just that this sort of language has become natural in discussing such things. I was looking to buy a lampshade frame, and on my search found some fairly wacky ideas of how to make your own lampshade. Then this, entirely sensible one. It begins
Nothing makes a more dramatic design statement than a pleated lampshade crafted from leftover wallpaper or border.
Nothing? I don't know. I could be mistaken, but I reckon I could think of one or two things which might make an everso slightly more dramatic design statement than a pleated lampshade crafted from leftover wallpaper. In any case, what statement, in a sentence, does a pleated lampshade crafted from leftover wallpaper make?

The ObeliskThe Obelisk deconstructed as chairsAnyway, on my on-line meanderings, I did come across one really appealing objet. The Obelisk. Which is an, um, obelisk, which turns into a table and four chairs.

If I had several grand to throw away, I would certain consider purchasing such an item.