Diary of a Goldfish: November 2006

Thursday, November 30, 2006

No news is good news, I guess

Hooray for the Whitby Gazette! Sometimes life in North Yorkshire seems terribly unglamourous, but then you read news like this: A pint of bitter - shaken but not stirred. This is the gripping news that the new James Bond actor, Daniel Craig, visited these parts when he was in an episode of Heartbeat (retro police drama filmed in this area) - as recently as 1993! The conclusion of the article sums up the grand scale of this showbiz revelation:

But although at least two present Goathland residents were acting as extras in Heartbeat at that time they have no recollection of Mr Craig.
Whitby Gazette correspondent Monica Urquhart was an extra in Heartbeat stories from 1991 until about five years ago.
She doesn't remember the episode but among her recollections as an extra was one when they recorded a carol service in St Mary's Church.
And she agreed that it's probable Mr Craig will have also been in St Mary's for the filming of the episode he appeared in.
Resident Peter Wainwright has appeared in 191 Heartbeat episodes but he cannot recall the Daniel Craig one either.

In other words, this actor who is in one really big movie, once came to this part of the world and probably came to St Mary's Church in Whitby, but nobody remembers a thing about it.

Meanwhile, a hand-grenade was found at the Recycling Centre, but everything was okay. Phew!

Labels: General Nonsense, Whitby

Wednesday, November 29, 2006

What not to wear, or Choice, Dress and Feminism

This issue of Muslim dress isn’t going away fast. One of the issues that frustrates me so much is the assumption that women who wear the niqab or the burkha or any kind of head dress don’t have a choice in doing so. This touches one of the most sensitive issues in feminist discourse.

Feminism, as with all movements for equality, is primarily about maximising the number of choices people have – to achieve equal opportunities for men and women. This principle has caused much difficulty for the simple reason that we don’t always approve of one another’s choices. Most of the arguments that continue to surface among feminists are very often triggered by an argument that there are some things that women shouldn’t or indeed cannot freely choose to do.

The cannot is far more interesting that the shouldn’t to me because it is nonsense, but such complicated nonsense. And in case you hadn’t noticed, I have a penchant for complicated nonsense.

After all, the degree of choice a person has lies primarily in the perception of the individual. And this perception is influenced by all sorts of things; personal circumstances, and social environment as well as our personalities (and everything that influences their construction).

For example, a person might grow up next to a lake, but never swim in it.

This may be because they have never seen anybody else swim and they don’t realise it’s possible.
This may be because they have been told in no uncertain terms that it is bad to swim in the lake.
This may be because it is against the law to swim in the lake.

In any of these three circumstances, a person’s curiosity might have overcome them, even to the extent of defying the law. However, the barriers of ignorance, social conditioning and most especially the law will have made it much less likely that this person would ever swim compared to a scenario where swimming was an okay and commonplace thing to do.

So to dress. In the West, men experience far greater social restrictions on dress than women do and this has been the case for the last century or two. The primary dress requirement for a man is to make his gender completely and utterly unambiguous, an effect generally achieved by wearing the same thing as all other men, give or take the pattern of a tie. My father is not in a job with a uniform, but if he was to deviate from the norm as much as to omit the tie, he would be considered unsuitably dressed for work.

However, despite the increased potential for variation, women are far more likely to be judged according to our physical appearance in all sorts of circumstances. For example, many cultural sources would lead us to believe that what we look like is the sum total of our sexual attractiveness, and that our sexual attractiveness is the sum total of our value as people. Many books, movies and television dramas, for example, have a sole feminine character who says or does very little but look pretty until the hero falls head over heals for her. And it is deep in our consciousness; a family friend left his wife of thirty years for another woman, and all anyone could say about the new flame was to exclaim in amazement, “But she’s not even as good-looking as the wife is!”

Religious anxiety about feminine modesty supports this as much as the skimpiest modern clothes; the former states my body is a sexual object, it must be covered up and the latter states my body is a sexual object, it must be displayed. In Western society, we get a big messy mixture of these two contrary messages.

Fortunately, this isn’t the sum total of the information available to us. But a woman who absorbs this particular set of messages is likely to feel that what she looks like and thus what she wears is absolutely pivotal to who she is and what she is worth. Most of us probably pick up some of that conditioning and our choices must be diminished as a result.

The same sort of thing happens in most cultures. However, it would be completely misleading to think that one can determine motivation from what an individual is wearing.

I cannot speak for Muslim women in the UK, but there are perhaps two main ways that feminists respond to the cultural baggage of feminine attire. One is straight-forward non-compliance; to metaphorically burn the bra, to dress entirely for comfort and modesty and to forgo beauty rituals like defoliation and make-up. The niqab could arguably seen as an extreme version of this response; I refuse to be judged in this way, so you shan’t judge see anything to judge me by.

Many feminists are reluctant to do this because self-ornamentation can be a big part of human sexuality. Many men and women enjoy the potential for self-expression and sensuality through clothing, jewellery, make-up etc..

So the other response is subversion; to take some or all of the cultural baggage and find ways of turning it on its head. However, the niqab can even be used in this way; wear the niqab, but then demonstrate by action that you are nothing like the silent, submissive, uneducated woman that has been historically associated with that dress.

There isn’t any right or wrong in this. If a woman feels the need to cover up because she considers her body shameful, or because she feels that to do otherwise is to invite unwanted attention or because she feels defined by her sexual relationship to men, then that’s a sad thing.

But we can’t say, just by looking at a person, that this is the case. Nor can we really say that any of our personal choices are made in complete independance from sexist conditioning, but you'll be pleased to know that nobody can say otherwise either. From a feminist perspective, mere consciousness of these issues is half the battle.

Incidentally, religion, as set apart from culture, can’t really come into an argument about diminised choice. Logically, if a religious practice is not a choice, then no God is going to reward its obedience or punish its defiance. It is also impossible for a society to treat religious practices as particularly special, because one could declare that almost any behaviour to be excused on the grounds of religion. What we can do however, is to give one another as much freedom and respect as possible and only interfere with practices which pose an actual problem. The circumstances under which the niqab or burkha may be a problem is really another issue.

Labels: Bodies, Equality, Freedom, Gender, General Nonsense, Philosophy

Tuesday, November 28, 2006

Hey there you with the pretty face, welcome to the human race!

Following a brief dalliance with Classical Music, rock sensation Alexander has embarked onto a journey into the world of Glam Rock. The Goldfish talks to him about teething and his recent change of direction. Photographs by Mummy. Links to videos of varying quality on Youtube.

I meet Alexander in his grandparents' Suffolk residence, on the first leg of an East Anglian tour. On the phone his agent passes on a message from him. "Come up and see me, make me smile." he says, so when I arrive I stick my tongue out at him, which I know from press reports to be his favourite expression. He thanks me with a giggle.

I then ask him how the tour was going.

"It's a god-awful small affair, for the girl in the mousey hair," he says, "but for everyone else it is going just fine, thank you. "

Alexander surprised critics and fans alike when he decided to follow the glitter-strewn path into Glam Rock. I want to talk to him about what made him make what many consider to be a surprising move for a baby born in the mid-noughties.

“Glam Rock is the natural music for babies," he explains. "Strong, often upbeat rhythms, colourful, sparkly and comical outfits, plus those cats were speaking our language. Wig wam bam, for example, or Salamanda Palaganda - it makes about as much sense as the babble I come out with.

"Then there are so many song songs tell our story, when Mark Bolan sang 'I danced myself out of the womb', or when Wizzard sang See my baby jive, they were talking about us. Bowie asked the question 'Oh you pretty things, don't you know you're driving your Mamas and Papas insane?' Well we do know; that's exactly what babies are here for.

"There are also those songs which touch on the deepest insecurities a baby can have, such as the Sweet's Little Willy. This is very much our music."

And does Alexander feel that the fan-base that he has accumulated during his brief classical career will be prepared to put on sequinned bell-bottoms and follow him across genres? Is he not afraid of betraying his classical heritage?

"I enjoy classical music," he says, "and I still enjoy listening to my Daddy play the organ. But I needed to broaden the parameters of self-expresion. After a while I simply thought, Roll over Beethoven."

But wasn't that one by Chuck Berry? Hardly Glam Rock.

"Yes, but it was covered by the Electric Light Orchestra, among others."

Alexander has been teething, which causes him to cry a great deal of the time, often during press conferences and performances. A lesser rock star might be afraid of fans losing patience with this incessant din.

But Alexanders remains confident of his fans' loyality. "As my Mummy always says, 'I won't laugh at you when you boo-hoo-hoo 'cause I love you'. I imagine that my fans feel much the same."

The obvious distress he has experienced during the teething process has provoked speculation about Alexander’s mental stability, but Alexander laughs this off.

"I thought that was very funny when Mummy told me about what they said," he giggles, "I said mamma, but we're all crazy now! I said mamma, but we’re all crazy now! I said mamma, we’re all crazy now!"

I was a little anxious about his need to repeat himself, but I put this down to the pressures of fame, fame, fame.

As he approaches his first Christmas, Alexander is becoming more active in the social and political issues which have always concerned him. He is particularly concerned about the plight of young people and the way that they are adversely affected by an ever-changing education system and so much cultural anxiety about drugs, sex and antisocial behaviour.

He says that often young people simply want to be left alone. "These children that you spit on, as they try to change their world, are immune to your consultation; they're quite aware of what they're going through."

It is all very well for rock stars to spout such rhetoric about an issue, but has Alexander any serious political ambitions? Is he prepared to go all the way for what he believes? He is candid in his reply.

"I wanna be elected."

Disclaimer: The author was born in 1980 and her knowledge of Glam Rock comes mostly from the movies Velvet Goldmine (a bizarre, sexually explicit film where Eddie Izzard is the only man without make-up) and Hedwig and the Angry Inch (the best musical on film, also rather rude in places).

Please note that the feather boa was being used as a (very successful) distraction during a medical examination, not as an attempt to humiliate the child in later life. Alexander was clearly enjoying it. He also adores the song Mr Blue Sky by the Electric Light Orchestra, which I don’t consider to be too bad a start in life. Is ELO even Glam Rock? What about Cockney Rebel? Alice Cooper? Anyone?

Labels: Cooing, General Nonsense, Love, Music

Sunday, November 26, 2006

It's a dangerous business, Frodo, going out your door.

Most of my travelling adventures took place when I was able to walk a bit further. There are many reasons why I haven’t used public transport since the relapse to end all relapses back in 2002, chiefly accessibility (obligations for public transport under the Disability Discrimination Act come into play in 2020). However, I guess I can use this post to talk about my experiences as someone with an invisible impairment, as I was before I began to need the wheelchair for most journeys out of the house.

I did have a mobility aid of sorts; a foldable stool which I carried on my shoulder everywhere I went – you too can have one for just £2.99. This meant that I could sit down almost whenever and wherever I went. And I did; I used to walk a bit, step out of people’s way and sit down, walk a bit further and sit down. I would also sit down at bus stops, on station platforms, waiting for a taxi, in queues, anywhere I would otherwise have to stand. This worked far better for me than having a stick or a cane, but it meant that there was no sign of a problem when I was actually on my feet.

(Incidentally, this is a very useful item to have in the house for people who struggle to stand. It is a cheap item which will eventually collapse, but I still have one in the kitchen so I can sit down while the kettle boils and that sort of thing).

Anyway, people work on what they see. In my case they saw a slim young woman with a fairly normal looking gait. Now this was no problem whatsoever, in principle. It was very often a problem in reality.

On the least disastrous end of the spectrum were things like the fact that I couldn’t give my seat up to someone who was elderly, pregnant or otherwise more frail-looking than I was. Which made me feel uncomfortable even though it is possible that nobody ever noticed. Meanwhile, nobody would automatically think to give up their seat for me and I couldn’t stand for the length of time it might take to plead my case. Nor was I ever pretty enough to make young men simply fall off their seats. So if the bus looked nearing full capacity I simply couldn’t get on.

Somewhat more problematic were the transport staff who would use my perceived fitness to cut corners. The sort of thing that wouldn’t have mattered to a fit young woman. Drivers who missed my stop if, having rung the bell, I didn’t stand up and make my way to the door well in advance. The next stop would only be 100yrds down the road, not two minutes agonising walk, not two or three extra days to recover from the trip… And then there was one particular bus-driver, who spotting this young woman at the bus stop (sat down on her foldable stool) decided not to pull in to the lay-by at all. He stopped the bus in road, holding the traffic up and shouting at me to hurry up as I crossed the road. When I told him where I was going (three or four stops away), he proposed that he should charge me double for being so bloody lazy.

On the most disastrous end of the spectrum, I struggled to get help when things went wrong. The worst train journey I ever took found me at one particular station absolutely packed with other people, tempers frayed since there were no trains and no information about when the situation might be resolved. The station staff weren’t speaking to anyone, and there was no visible sign that I was less able to cope with the situation than anyone else. In the end, my sister, who was elsewhere, phoned the rail company and described to them the conditions in which her poor crippled sister was waiting in. At which point they kindly put me in a taxi for the remaining ninety miles of my journey – for free! But honestly, I was in a rather bad state and any longer and they might have had to stretcher me off that accursed platform.

And that is the real killer for someone with my sort of condition when it comes to travelling; I could never afford for things to go dramatically wrong. I did a lot of travelling alone by train in my late teens when I was at this level of health and had total confidence in my ability to work out where I needed to be, to deal with minor set-backs, to find help and information should I need it. But the more my physical and cognitive stamina deteriorated the worse the worst case scenario became, until the last few journeys I made were taken in a state of complete anxiety.

Labels: Disability, Freedom, General Nonsense, Getting Out

Friday, November 24, 2006

String and Sealing Wax and Other Fancy stuff.

Back home, I am rediscovering the utter tedium that is Christmas Shopping. Last year I made most of my presents so I didn't have to face this. And of course, it wasn't at all tedious earlier in the autumn when I was dealing with my good ideas presents; seeking out things which I was confident that my donees would like and appreciate. But now we're down to those people who possess very few passions or interests in life, but for whom a novelty tie would be an admission of defeat.

There is so much useless tat about. There are now two dozen on-line shops dedicated to gadgets and novelties which are amusing in concept but which you know would be lost at the back of a draw before New Year. Most of it is so dear. And yet, we really haven't sorted the ettiquette of getting charitible gifts; planting trees, buying goats, wheelchairs etc. on other people's behalfs. It is quite different if that is something someone has asked for, but if not, is it really on?

I have had at least some luck. The present I am most chuffed with is a custom-made stamp for making wax seals and a load of coloured wax for one donee who doesn't do e-mail. If you're going to live in the seventeenth century, you might as well as do it with style. And purple wax.

Whitlejacket by Stubbs (iconic painting of a horse)

I must also recommend the National Gallery Shop. I think I mentioned the Create Your Own Calendar facility last year, which I think is great. They also have a collection of Hieronymous Bosch figurines - all the surreal characters from Hell. Some of their art-inspired items are less convincing. Take for example, the iconic Whistlejacket by Stubbs; not my cup of tea, but it is a pretty amazing painting.

And here is the specially commissioned soft toy which claims to represent it. Can you see the likeness? Can you any connection between that painting and this item apart from the fact that the painting features a brown four-limbed creature and this toy apparently has four limbs and is brown?

Perhaps almost as bad is the "Pop-Up Sunflowers", after Van Gogh...

The Tate has a shop too, but it's very much dearer on account of the fact that many of the artists in their collection are still living.

And then of course Amazon is great for most people - unless they don't read books or listen to music. Or if they do, but they can never muster enough passion about books or music to make it worth me finding something for them. Which is the case with some of my donees.

Important tip to men buying gifts for women; if you look in a shop on-line and it says Gifts for Her, don't get anything from there. Gifts for Her consist of anything which is shiny, smelly, slimey, pink or made out of chocolate - and often a combination of the above. Many women do like gifts with these attributes, but there are generally better sources, places where the packaging is worth significantly less than the item; try to buy shiny things from a shiny shop, smelly and slimey things from a smelly and slimey shop and chocolates from a chocolate shop. Pink things for the over-14s? Use your own discretion.

Labels: General Nonsense, Shopping

Thursday, November 23, 2006

Disability Blog Carnival #4

Welcome to the 4th Disability Blog Carnival and thank you to everyone who has contributed. I hope the way I have organised this makes sense. If anybody spots any glaring mistakes or broken links, please let me know.

Different Ways of Going about Things

Disabled people are regularly attributed with various qualities which we may or may not have; bravery, pluckiness and so on. However the one quality which I have most consistantly noted among my fellow crips has been adaptibility; the ability to seek out and adjust to a different way of going about things, a different way of looking at a task or indeed life itself.

Our remarkable ability to innovate and adapt is what makes humans such fantastic and successful animals - this is not a talent exclusive to disabled people. However, as Lady Bracknell said back in April, necessity is the mother of invention, and disabled people simply have the need and opportunity to demonstrate this more than most.

Different Ways of Living

Suzy at Tryin' to Imagine Bliss writes that Sometimes It Takes An Illness to force you to do what you really love. This is a theme taken up by Charles Dawson at The Meanderings of a Politically Incorrect Crip in Thoughts That Lie Too Thingummajig for Words;

To develop an impairment in adult life can mean, to be given a second chance, if you want to look at it like that. To get off the treadmill. To say, well, I can't do this-or-that any more, so what else can I do?

Belated Happy Birthday to Gordon, who in 25 years (and five days) on at Gordon's D-Zone reflects on the disability lessons of the first 25 years of his life. Amanda at Ballastexistenz discusses the ways in which she uses quite different cognitive processes from non-autistic people in order to do things in Doing Things Differently.

Zephyr at Arthritic Young Thing writes about her experience of shame and gradual acceptance of Living Off Disability, something I can relate a great deal to myself;

I've spent the majority of my life on disability income assistance. I felt ashamed and humiliated about that for a long time. It's hard to not be able to support oneself. It makes you feel sub-human, like you're not a fully functioning member of society.

She goes on to discuss the situation for people on Disability Benefits in Canada in these two subsequent posts.

In the wonderfully entitled This is super long and unedited, but if you want to read about my sexlife this is probably your only chance, the author of Letter to my Children writes candidly about sex, marriage and disability. Meanwhile, Pete at Rocky Spring's Blog talks about the innovative ways his friend has adapted to having one eye in One Eyed Medical Engineering.

Different Ways of Communicating

Stephen at Planet of the Blind shares a poem with us entitled Talking Books. Blue at the Gimp Parade opens an informative debate on "Web accessibility" for the disabled vs. for everyone. Meanwhile, Wheelie Catholic writes about her new electronic page turner (and her cat) in A real page turner.

Amanda at Ballastexistenz writes a really fascinating post about Learning Communication Skills from Autistic People.

When I was a certain age, I was very confused about communication. It’s hard to describe that state of mind in a language that is developed mostly through use by people who have not had the experiences I have had. Even many autistic people I know have not had this experience. I have, though. Remember, that I was not thinking these things in language. Remember also, some of these things are things I may have known before, but forgotten in one of the brain-scrambles of puberty. I have no way of knowing at this point, all I know is what it was like for me.

Different Ways of Having Fun

Turvy at Off to Great Places tells us about Dog Show Weekend and how she is finding new ways of attending the shows and carrying her photography equipment with her;

There is nothing particularly innovative about my rig. Rather, I knew what I wanted to be able to do and knew that the walker I was sent home with wouldn't work. I proceeded to set about finding solutions that would work for me; to give me the flexibility and freedom to achieve my goals. Search Engines and the Internet were my advisers and friends!

At Life with a Disability, Bill Tipton writes about his adventures Picking Apples without Sight (Bill might be interested in Sara's recipe). Ziggi at Wheelchair Diffusion informs us about The Golden Access Pass, an admission card available for disabled people in the US which awards free entry into National Parks and other attractions. Ask Patty covers a project to encourage disabled people to take part in motorsports in Ask Patty supports Motorsports; Living life in motion.

In Ahoy! Disabled Divers Welcome Scott at the Rolling Rains Report takes about The Dive Pirates, a group that takes disabled people diving. Meanwhile Vicki at Down the MS Path offers some resources for people with MS who wish to practice yoga.

Different Ways of Shaking One's Thing

Autism Diva writes a glorious celebration of A thing of beauty: The joy of spinning and flapping. Zephyr is inspired by a video about Crutch Dancing!, whilst Imfunnytoo at Did I Miss Something? has her own perspective on Dancing;

I loved to dance. I'm not talking about dance-as-scheduled-performance.

I'm talking about dance-as-connection-with-something. Dance brings me closer to music.

Wheelchair Dancer is High, high, high, flying high, high high following an opening night's performance New York. Which is always good to hear.

Different Ways of Learning.

In Thinking Outside the Box, David at Growing Up with a Disability writes about the unique way in which he completed his high-school education;

It seems to me that in our society, many decisions are made for people with disabilities by simply doing what has always been done. Each of us needs to think for ourselves about our own individual goals, and then use our toolbox of tools to make the best decision.

And in Failing to Cheat, Andrea's Buzzing About describes the way in which a lack of imagination in educative practices can disadvantage children with conditions such as ADHD;

After all, it’s generally thought a child with perfect hearing should be able to understand directions. Included in this are the assumptions that in addition to basic sensory hearing, “hearing” includes being able to maintain attention (listening), being able to understand what is heard (decoding), and also knowing what is meant by those words (interpreting).

Monday, November 20, 2006

Lost among the subway crowds, I try to catch your eye

Yesterday we went to London! It was very exciting. Since I was last in our nation's Capital they have built an enormous whirly-gig called the London Eye, the Millennium Bridge and a great glass Gherkin, hopefully part of a growing trend to promote healthy-eating through architecture.

I had been invited to a party that we didn't expect to be able to attend before my folks very generously volunteered give us a lift in. [...] was concerned that they would have nothing to do while we were at this party.

"It is a Sunday," he said, "It's not as if any of the shops or tourist attractions will be open."

He was rather shocked at the scenes in Oxford Street and Regents Street on the way home. To be honest, I was rather shocked as soon as we got into London at the sheer volume of people, I mean so many people. I saw more faces in one day yesterday than I have seen in the last five years put together. Also, there was a strong sense that most of the buildings in central London have been built for people three feet taller than me. Everything is so grand and so very big. But the Christmas Lights were fantastic and London does have a certain romance.

We had a great time, it was the busiest day in absolutely ages and we met some lovely people. Today I shall sleep.

Just a little reminder that today is the deadline for submitting any posts to the 4th Disability Carnival, which I will post here on Thursday.

Labels: General Nonsense, Getting Out, Love

Friday, November 17, 2006

The rain falls down on a humdrum town

I am still having a lovely time in Suffolk. A very busy time; the busiest time in terms of doing stuff I have had in years. I am being good though. Honest.

Today we visited Ipswich, the town where I was born and brung up. It rained very heavily. It is very strange that I don't feel so much as a twinge of sentimentality about the place, because I didn't really hate it. It is just that there's nothing really to say about it. Not a bad place by any means, but it is not a place with great character. Of course, I was the kind of young person who would have aspired to get out of any place she had been brought up in.

Anyway, we took my two Grannies out for a meal, which was nice. I chose Whitby Scampi from the menu, as I was feeling rather homesick. Both the Grannies were in good spirits. My maternal Gran has just had yet another grandchild, (my second cousin, I guess) but whose name she had forgotten.

"It's James," I said, "like Granddad."

"Oh yes," she said, "You know, I never knew his name was James until he died."

"What?"

"No, I thought his name was Harry."

"But what about when you got married?"

"I wasn't paying much attention to be honest."

My Granddad was known as Harry. My Grandad Kelly was known as Desmond and his true first name was John. My Granny is known as Audrey but her real first name is Alice. You will therefore understand why an imaginative child grew up thinking that her family were either involved in the Criminal Underworld or the Intelligence Services. All thoses aliases. And no Internet.

In other news, Lady Bracknell's Editor, MBE, will have had her Investiture today at Buckingham Palace. And An Unreliable Witness has arrived home after five months and five days in hospital. Hooray!

Labels: General Nonsense, Past Tense

Wednesday, November 15, 2006

Illness Beliefs, Impairment, Empowerment and Guilt

I wanted to write about Illness Beliefs. This is the belief system a person develops to understand any given illness, why they are ill and what they might do to get better. For example, by the time we reach adulthood most of us will have an idea about what the common cold is and what impact our behaviour will have on any cold we might catch. We know it is an infectious condition, but not a serious one. We know that there’s no medication that can cure it, but it will be over shortly and there are a few things we can do to reduce the impact of symptoms; rest, eucalyptus, lemon, honey, camomile, Scotch etc.

Chronic illness is far more complicated. Its effects are far more dramatic but the long-term nature of the thing means that we have far more power over what happens to us. The ups and downs can be affected by the way we manage our diet, activity, adherence to treatment regimes and how we respond to relapses and remissions. And how we behave is determined by our illness beliefs; our understanding of how our condition works, how we got ill and the powers we have over our prognosis.

The reason I wanted to write about this is the way I have been thinking about recent improvements in my health and the way that my attitude has changed as a result. There is no doubt in my mind that illness beliefs can be very important; attitude can be either highly beneficial or highly detrimental, but analysis of them and their role is very very difficult.

It is a problem endlessly discussed in medicine; for example, some people respond to chronic illness or injury by retreating from, rather than altering, activities. This can do a lot of harm; people may step back from work, social activity, physical exercise and treatment regimes, resulting in a deterioration of both physical and mental health.

However, it is impossible to determine to what degree avoidance is perfectly sensible; at the very least, an ill person generally needs to reduce activity from normal levels before the symptoms of illness will do it for them. If a person is stable at the level of activity they partake in, this may mean that they are failing to push themselves, or it may mean that this individual has found the optimum balance. It is hard enough for us to consider these questions, let alone people on the outside. Wheelchair Dancer wrote something about this last month.

Another issue is that experience and belief are intrinsically linked. I have seen a number of formal clinical studies about different conditions, concluding that attitude effects prognosis, since people who were more severely ill tended to be more pessimistic about their health. But correlation and causation are not the same thing; the way such data is usually collected, it could just as easily be that greater severity of illness brings about increased pessimism.

This bears out in my own recent experience; just now I am very much more optimistic about my health - including the power I have to effect change in my health - than this time last year when I was heading steadily downhill.

But perhaps most importantly, the only unhelpful illness beliefs that are ever discussed by the medical community are those where a sick person feels they have less control than they really do. That a patient has the wrong attitude is the ultimate get-out clause for any frustrated physician, therapist or even the researcher whose hypothesis failed. Personally, I have always been very fortunate with doctors and the like, but I have still reached a position where I have felt wholly responsible for my health and as such, pretty wretched about the state I have managed to get myself into.

A recent post by Ballastexistenz really caused me to examine this closely, because I have always thought this stuff limited to chronic illness with the potential for remission or the sort of injury which may be followed by some degree of rehabilitation.

Ballastexistenz describes thought processes very close to my own, but she is not sick, she has autism. Autism is neurodevelopmental; as I understand it, her attitude and that of those around her may impact on the level of disability she experiences, but cannot possibly effect functional impairment (apologies for discussing you in the third person, should you be reading this).

And yet what she described was so very familiar that it had me in tears. I guess a lot that I wrote about loci of control relates to the way my own mind works at times, but the fact someone with autism felt this way made me just how ridiculous these ideas are. Because impairment is to do with a random event or series of events; people may make themselves more or less vulnerable to acquiring impairment or having disabled children, but nobody is immune. And most of the factors effecting the degree to which we are impaired are simply down to luck.

Unfortunately, in my case, I know there are things I can do which might effect my level of impairment. I know I have effectively brought about relapse by running myself into the ground, and contributed to a degree of remission through being careful, pacing, exercise and so on. Plenty of random events in the mix as well, but that's besides the point. In one sense, I dearly wish I had no choices, to know that every little push is a gamble. I could get used to the one stable level of health; I would know what I had to work with all the time.

In another sense, it is very empowering to feel that the choices I make can have a positive, as well as a preventative effect on my health. I can't help feeling slightly smug about the fact I'm doing better and my muscles are getting stronger just now.

Hmm. Not really sure what my point was, but I wanted to get some of this out of my head. Everything is still going well in Suffolk...

Labels: Disability, General Nonsense, Guilt

Monday, November 13, 2006

Materteral Mishaps and Laboured Linguistics

We had a very good weekend, much better than anticipated. We went out for a lovely meal with the aged Ps, R, A & A to celebrate our anniversary. A good time was had by all. Alexander was very sweet, but he did throw a showbiz tantrum on Saturday afternoon and I couldn't be in the same room as him, the racket he made. Something to do with teeth coming through, being somewhat overtired and having a cold, he said, but I think he simply had to be centre of attention.

He does however think it is very funny when someone sticks their tongue out at him. He smiles, giggles and then tries to do it himself - which he can just about manage. This is fascinating to me; he is way too young to have a sense of humour or to realise that someone is pulling a silly face. And he doesn't immitate other expressions. In fact, he appears to be working very hard to focus on a person's face at all.

Alexander met Kettle the pirate for the first time and was very impressed by him. He smiled a lot and gave him a friendly punch in the chest several times, which I interpreted to be a gesture of approval. He demonstrated his thanks to me by attempting to vomit over my shoulder, rather than to vomit straight onto my lovely clean top. Unfortunately, he missed.

Materteral, by the way, is like the feminine of avuncular; i.e. aunt-like. I am not sure whether we should stick to masculine familial terms since they have now almost lost their gender; paternal, fraternal, avuncular etc. Avuncular isn't exactly used everyday; I didn't know what it meant the first time a much older male friend declared he had very strong avuncular feelings towards me. I was quite worried for a moment.

To be an aunt is a very important role. And indeed, there is a feeling we have towards our friends sometimes which is a little bit protective, and encompasses a desire to give guidance and help but doesn't involve the sort of protectiveness and angst which one might describe as being maternal.

However, is there anything particularly different about being an aunt as opposed to an uncle? I can't imagine so. So perhaps we should stick with avuncular to described the relationship between the siblings of parents and their nieces and nephews? Is accepting the masculine as default a slight on the feminine or merely the most sensible way to do away with gendered language altogether?

Some feminists have attempted to reclaim the word patriarchy, referred to as The Patriarchy to mean "our society which is run by men in the interests of men; a sexist society", but then that leaves us without a word to describe a "a society run by one group of people who maintain an unnecessarily level of control over others, mirroring a parent-child relationship" (and the various other meanings which don't hinge on gender). It also draws attention to the presence of gender in patron, patronise, patriot and various other words which we don't have neutral alternatives to. Whilst language is important, you'd have to rewrite the whole thing (and abandon the Romance languages altogether) if you wanted to take all references to gender literally.

However, as an aunt I have struggled to find good cultural role models. Lots of our stories have positive representations of the uncle. The kind uncle who take his nieces and nephews under his wing, the eccentric uncle who entertains the children, the uncle who become substitute fathers, the man called "uncle" who turns out to be the mother's lover or even the child's father. But aunts? I can think of a few nasty aunts who bullied mothers or exploited their orphan nieces and nephews, but no particularly good ones.

So in a sense, I would like to promote the role of the aunt, to promote materteral pride. A lot more women are able to chose not to have children these days, but that doesn't mean that we don't want anything to do with children, that we don't have a special contribution to make (or indeed that we are secretly frustrated by our childlessness and pose any competition to the parents). Nor should all relationships that women have be restricted to being described as either romantic or maternal. My materteral role is very important to me, and I have strong sororal feelings towards my closest friends.

Then again, maybe there is something to be said for being easily understood...

Labels: Cooing, Gender, General Nonsense, Language

Friday, November 10, 2006

The 4th Disability Carnival is Coming Soon.

David at Growing Up With A Disabilty did a sterling job hosting the 3rd Disability Blog Carnival yesterday. The next one will be here, at Diary of a Goldfish, on Thursday 23rd November. You can make submissions for it (by Monday 20th, please) here or by e-mailing me.

The theme for this Carnival will be Different Ways of Going About Things. As always, any disability-related blog posts are welcome, but I am particularly interested in the ways in which people are able to the things they want to do by some method other than the usual methods which are frequently barred to us for one reason or another.

This could anything from how you use equipment or a neat way you have devised to manage something you wouldn't otherwise be able to do, right through to the ways in which, because of impairment, you have found a completely different way of looking at your life, what you want to do with it and how that might be achieved.

We are used to hearing a lot about what we can't do, the way in which impairments stop us doing very much of what is considered to be normal. But is there only one way of going about any given task? Are the expectations of a normal life all that they are made out to be? And might there be some richer adventure to be had along the road less travelled?

Labels: Clicking, General Nonsense

Suffolk

We had a lovely journey down to Suffolk; the light was absolutely gorgeous and even the concrete bridges looked nice. We also found the wormhole that allowed the journey to be achieved in just four hours. And we're going to see Alexander later on today. Hooray!

Labels: General Nonsense

Wednesday, November 08, 2006

The Goldfish Guide to remembering your PIN

I recently got the PIN sorted out on my credit card; in the UK we have needed a Personal Identification Number to use a debit or credit card since February this year, but of course I haven’t bought anything in a real shop since then. I was thinking about this and my cognitive dysfunction and thought I would share my thoughts in case it might be useful to anyone else.

I should explain that there is very little information which I know at all times without having to think about it. For example, the way I remember my name is to picture the top left-hand corner of a sheet of lined A4 paper. The very first thing I think to do when presented with a sheet of paper is to write my name on it – something I would have been doing several times a day throughout my school career. I consider what it is I need to write in that corner and I remember what I am called. Which only takes a brief moment.

So obviously, I can't just glance at the PIN the bank sent me and hope to remember it next time I'm in a shop. But I've never had any problem with the PIN I use to get cash from the machine.

First off, you are much more likely to remember a PIN when you have chosen it yourself; if you have memory issues or dyslexia, there's probably not much point in trying to memorise whatever random numbers you were initially sent by the bank. Phone them up and pick your own number.

Some people have numbers they learnt as children which have no relevance today, but stick in the mind very easily; your parents' Co-Op number for example, or part of your first phone-number.

Failing that, the simplest method is to pick a significant year in the second millennium AD; 1066, 1492, 1603, 1812, 1984 etc. I imagine the bank would advise against using the year of your birth, marriage etc..

1812 and 1984 are particularly good because, in my mind at least, each is associated with a historic event, a book (War and Peace and 1984) and most crucially, a memorable piece of music (Tchaikovsky’s 1812 Overture and David Bowie’s 1984). And yet others are unlikely to guess this, unless those dates have any particular personal significance.

The other, less easy, but more secure method is to chose a sequence of numbers which represent some simple maths like 3721 (3 x 7 = 21). Similarly 9218, 6488, 6713 and so on. This gives you something more to work with than just four random numbers, and if you forget one you can still work it out. For example, if all I can remember is 369_. Well, I know that three and six can’t be made into anything with a 9 in that position and I don’t have enough room for the 12 which would be the next number in that sequence. Thus, it must represent 36 and 9 and the only sum I’ve got room for is 36 / 9 = 4, so 3694.

For extra measure, do write it down, as part of a made-up phone number in an address book, or as a pretend price for something you have taken a note of. But make sure it isn’t too prominent or obvious wherever it is.

Labels: Advice, Disability, General Nonsense