Sunday, October 29, 2006

The Horn of my Salvation

I have no idea why I felt inclined to write about this, but I did.

My sister Rosie played recorder when she was at primary school. The recorder has a bad name; one most often hears it played by small children who can only play three notes and that’s very slowly, but it is a truly gorgeous sound when played competently. Then at the beginning of high school, Rosie took up the French Horn.

A French HornThe French Horn is an excellent instrument to encourage a child to play. For one thing, it doesn’t make horrible noises when one is first trying to get a noise out of it – it is not easy, but the worst you can produce is make a huffy-puffy wheezing noise or a loud low fart; you can’t attract stray cats to your window sill like you can when learning a violin or clarinet. But best of all it boasts the advantages of being a rather unpopular musical instrument (especially among girls) and often having relatively simple parts in orchestral pieces. This means that a much lower level of skill is required to get into an orchestra and to begin playing proper music with other people than you need with your strings and woodwind. This in turn is a very effective and fulfilling form of practice and improves the playing pretty quickly.

Unfortunately, it is rather unromantic. Even when a person gets good at it, they are still too often shoved at the back of the stage playing rather simple baselines. And then there is the issue of the spit valve. The instrument is a cold brass tube and is played by effectively blowing tight-lipped raspberries into it. Inevitably, there is condensation.

It was on BBC Radio Suffolk one Christmas Eve that a brass band Rosie was in was playing Christmas Carols. During a break, the presenter interviews some of the band. “So what’s your name?”

“Rosemary,” she says in her soft little voice.

“And what is it that I saw you doing just now?”

“I was just emptying all my spit out onto the floor.”

Rosie took her horn all around Europe with various youth orchestras and bands; Spain, Hungary, Germany, the Czech Republic and Saltzburg, Austria, birthplace of her idol. Rosemary actually had a little portrait of Mozart stuck to the inside of her pencil tin. It was really quite unhealthy.

I was dragged, by my hair, to many concerts as a teenager and not every one was an unrivalled pleasure. I have actually attempted to count the bricks in the walls of several music venues across East Anglia. And it didn’t even seem to be for Rosie’s benefit since I could rarely see her or make out which notes she was playing.

But then there was going to be a big school concert at the Ipswich Corn Exchange (we were a strange school; we had a proper purpose built theatre, but we were always holding concerts elsewhere, at Snape Maltings or the Corn Exchange). It was Rosie’s last year at school and they were going to play Mozart’s Horn Concerto #4 in E Flat Major. This is the one you think of if you can only think of one Horn Concerto. The third movement is a very famous Rondo to which you can sing these lyrics, should you be so inclined.

Mum and I came with Rosie to find a frock for her big solo. We went in all these incredibly posh dress shops, the sort where you get served coffee while you’re waiting for someone to try stuff on. But it was hopeless; there were short dresses which were inappropriate, long dresses that just looked wrong on an eighteen-year-old and most of them were black, which isn’t really the thing for a soloist. We gave up and on the way home we popped into a charity shop, where hanging by the door was the most ridiculous flouncey red dress one could ever envisage.

This dress was a little extreme. It had presumably been a bridesmaid dress circa 1987, but it was scarlet, the colour of pillar-boxes. And it was very… full. It had big puffy sleeves, a big flounce around the shoulders and a big silly skirt. Really honestly, this was not a dress that ought to have looked all right on anyone in any circumstances.

And yet there we are a few days later in the Ipswich Corn Exchange, up strikes the orchestra and out she comes in a blaze of bright red and brass. And she looked incredible. And she sounded incredible. And in all the many and tedious concerts I had attended, I had never seen a soloist looking so much at ease or playing so perfectly. And in all the many and tedious works of Mozart I had been subject to, none of them had ever sustained my attention for twenty minutes before.

Tragically, it was one of the last times I heard Rosie play horn at all. She developed Repetitive Strain Injury in her wrist half way through her music degree and not only had to significantly reduce her playing, but she had to endure all the obvious jokes about horny students knackering their wrists. But as is very often the case, there was a silver lining...

White shoes? With a green coat?The RSI meant that Rosie had to use her voice as the main instrument with which to complete the practical part of her degree, and it was through her incessant warbling that she met choirmaster and organist extraordinaire, Adrian. With her horn and his remarkable organ, it was only a matter of time before they got together and produced the musical sensation that is Alexander. And they all lived happily after, with the horn making an occasional return whenever a local orchestra decides to perform The Planets (which you need several horns for, apparently).

Saturday, October 28, 2006

Balls to the environment

I have funky new toys, but really they are very sensible items for performing a sensible task and reducing the amount of pollution I am responsible for.

They are Ecoballs (on your right) and Dryer balls (left). Really I ought to hold off posting about these because I haven't thoroughly tested them, but they do look really cool.

These promise to do away with the need for washing powder, fabric condition and the resultant pollution was well as saving on the electricity required for rinsing and to dry clothes in a tumble-dryer (which we have to use). They also purport to be much better for sensitive skin, to cut down on the need for ironing and reduce the amount of fluff generated.

Yes, it does sound rather amazing...

The Ecoballs cost me £24.50 and my Dryer Balls £6.99 from the Ethical Superstore (they've gone up in price since, sorry). The Ecoballs are supposed to last 1000 washes. My box of washing powder is supposed to last thirty washes at £3.74, totally about £125 for 1000 washes, £175 with fabric conditioner. So the economics make a lot of sense, assuming both manufacturers have been equally generous with their estimates.

Plus, the Dryer Balls are supposed to reduce the required drying time by 25% and reduce the need for ironing. We very rarely iron anything, but given how often the Dryer is in use and given that a Tumble-Dryer needs a lot of energy to do its thing, I should be saving a significant amount of electricity and some pennies as a result.

And naturally, you're adding no chemincal pollutants to the sea.

Only trouble is, I don't really understand the science in either case, not enough to be completely and utterly convinced by them. Ionised oxygen, apparently. I know what that means but I don't know enough about how that's supposed to clean things. I bought them because I had read so many good reviews and no negative ones. I will let you know how I get on.

Wednesday, October 25, 2006

Music To Watch Patients By #2

As mentioned previously, my doctor's surgery have been known to play a bizarre selection of music to patients in the waiting room. When we arrived this morning they were playing something very cheerful, which was a little like the Gollywog's Cakewalk but not - you know the sort of thing I mean; a little too springy for that early in the morning to be honest. But then...

Oh Fortuna! Velut luna
Statu variabilis!

Orff's Carmina Burana is not the sort of music you should be playing to patients, some of whom are going to be feeling pretty grim, others of whom may already be on edge waiting for the results of tests. I know they don't teach Latin any more, but the gist of that particular lyric would elude very few of us.

So I have since been thinking about even more inappropriate tracks to play to patients in waiting rooms. Here are my first ten songs. Feel free to suggest more - if I have enough, I may burn a compilation CD and give it to them next time I'm up there.
  1. Killing Me Softly - Roberta Flack
  2. Girlfriend in a Coma - the Smiths
  3. Somewhere a Clock is Ticking - Snow Patrol
  4. You're Tender and You're Tired - Manic Street Preachers
  5. The Drugs Don't Work - The Verve
  6. I die: You die - Gary Numan
  7. Knocking on Heaven's Door - Bob Dylan
  8. Another One Bites the Dust - Queen
  9. But I might die tonight - Cat Stevens, and also in arguably worse taste:
  10. I can't keep it in - Cat Stevens (I can't keep it in, no I can't keep it in, I've got to let it out...)

Tuesday, October 24, 2006

Friends Electric

This morning we received a visit from Boogaloo Dude, Lady Bracknell's Chauffeur. Being a modern and caring employer, her Ladyship had kindly granted him an entire week's annual leave which he is taking with his family in Yorkshire. The Goldfish household experienced a slight catering crisis and had nothing to offer but gingernuts, but the Dude made no complaint. Her Ladyship is very fortunate to have such a charming and affable gentleman on her staff.

A very swish CD case designMeanwhile, another of my friends and occasional commenters, esteemed Ouch networker Pete Mentalasfork produced this fantastic design for Alexander's Christmas album.

This is so good, I'm beginning to think that I might actually have to help my young nephew to produce some tracks for real.

Lord, my body has been a good friend

Well she hasn’t actually, but we are entering a process of reconciliation. We still have some major differences of opinion, mostly around issues of rudimentary neurology. We also disagree about the process of digestion, but not the way we used to, when she decided that the whole thing was impossible without chemical assistance. And immunology remains an area of significant conflict. In theory, I had and recovered from a cold three weeks ago, but she is still spinning it out for all it is worth.

“It’s over,” I say, “We had our cold. We got over our cold. It is most unlikely that we are still infected.”

“Achew!” is her reply.

But there are some ways in which we have both started giving ground.

When you’re really unwell, nothing ever feels any better. In reality, you do have periods of being more tired and less tired, but the tired you feel before you drop into twelve hours sleep at night is little different from the tired you felt during waking hours. This is why you end up going to sleep in an usual place or half way through a conversation; you don’t see it coming because you feel that way all the time. And of course, there’s no relief; however many hours you sleep, you won’t ever feel refreshed.

What a deal we have struck, my body and I! These days, if I go to bed when she tells me in the evening – whatever time that is - then she will give me runs of days where I wake up at the same time and don’t sleep at all during the day. This results in three exciting and unfamiliar experiences:
  • A kind of phew feeling when I get into bed at the end of the day. The bed has actually become a comfortable place. I can’t remember the last time I lay down and it felt good as opposed to lying down and feeling slightly less awful.
  • A sense that I have remarkably more energy in the morning (once I've come round and that can take a while) than I did last thing at night. You may note by the time at which this was published, there will be inevitable exceptions to this rule.
  • Getting out of the bath when the water temperature is still above freezing. What joy!

We’ve also come to an agreement about exercise. For all her faults, she is really being very kind about that just now.

It still hurts a bit to do what I do, but the effect of this doesn’t last long at all. So it strikes me that some of what I am up against is atrophy as opposed to illness pain, which is a different mechanism and quite a different feeling. Even a strong muscle can become overcome by acidosis and it gets to hurt very much indeed before the muscle becomes weak and fails – and it really does fail. Our problem - mine and hers - is that the muscles can reach acidosis crossing the room and they never recover properly. Whereas atrophy is just weakness, which is vaguely uncomfortable; like pushing against an object we’re not nearly strong enough to move.

In chronic illness, these things can become indistinguishable. Only when I’m building myself up, do I try to differentiate. Atrophy can only be improved through activity and the discomfort can’t do me too much harm (not with what I’m doing), whereas increasing my illness pain today will mean being able to do less tomorrow and possibly the next day and the next. I can push myself on one count, but not the other.

Of course the more exercise I get, the bigger and stronger my muscles become, the better my circulation and the better condition my entire body is in for dealing with this shit. So in order to do this and to avoid being held back by atrophy, I have to do the same amount every day, be careful not to do to much but gradually increase this over time.

The only thing that can set me back – and indeed, has persistently set me back at every attempt over the last ten years – is relapse, usually in the form of some immune disaster. I get more sick, the pain dramatically increases and with it every other symptom which makes any kind exercise impossible; bad co-ordination, dizziness, fatigue and so on.

My GP generously compares me to an Olympic Athlete. “You keep getting bronze all the time, but you do keep trying and that’s what is important.”

Bronze. Hmm.

Anyway, in return for these favours, I have been nice to my body. I tell her that she's losing weight when I look in the mirror. I have been more consistant with giving her adequate rests. And I have reduced the painkillers which make me feel better but which I acknowlegde do make some of her jobs more difficult.

Now, having written this nice friendly post all about her, I am hoping that if I ask very nicely she will let me back to sleep, having been sufficiently appeased to reduce the particular cramp that the bitch woke me up with at four o'clock in the morning.

Sunday, October 22, 2006

I tried and tried to know a veil

Bunnyman mused about the insensitivity of Jack Straw's remarks shortly after this began, Blue at The Gimp Parade has written two excellent posts, focussing on the way in which discussions around disability has been referred to throughout this debate and James Medhurst has written some of his thoughts about liberty and its parameters. I didn't intend to write anything, but this is going on and on and I had to get this out of my system.

Another piece of cloth once subject to a banAbout three weeks ago, a debate opened in the UK about a piece of cloth. This is the niqab, a veil which is worn by a minority of British Muslim women such their bodies are completely covered save their eyes and hands. The debate opened when MP Jack Straw said that he felt that women who wore this item made community relations more difficult. The debate took a turn when teaching assistant Aishah Azmi was suspended from her job as it was felt that her veil was a hindrance to doing her job.

First off, costume and ornamentation relating to religion cannot have a sacred position under law. We have many religions, within which there are many divergent views and practices. We also have a great number of people who have strongly-held beliefs and positions of identity which are not part of an organised religion. It would be impossible to privilege one religious or cultural practice over another, unless we could perform some sort of sincerity test on individuals, or simply decide which religion is the one true religion and regard everyone else as a heathen.

Been there, done that, killed the first-born, bought the t-shirt. Some have argued that the UK is a Christian country and therefore Christianity should enjoy this privilege. However, which particular shade of Christianity? If Anglicanism, which particular shade of Anglicanism, especially as most of us do not attend Church?

Difference of strongly held opinion is an inevitable consequence of human beings living together and religious conflict has been responsible for all variety of civil unrest, war and genocide throughout history. This is not a fault with religion in general; religion, like music or sport, is something that crops up in all human societies and can embody some of man's very best qualities; creativity, ingenuity, rationality, co-operation and altruism. Or it can be quite the opposite. The real killer is the idea that consensus on the issues of life, death and the universe is either a desirable or viable objective.

There is no Final Solution, no point that we will get to after which we will all be in agreement. The aim therefore is not to agree on all points, but to agree on enough points that we can coexist.

For this reason, we have to allow people as much freedom to practice their religions as they can possibly be afforded. Religious diversity has long been a part of our culture* and religious intolerance is a direct threat to it. The only laws about costume are to do with safety and immodesty; you’re not allowed to walk down the road naked, much to the relief of your neighbours. All this ‘When in Rome…’ stuff is nonsense because there is simply no archetype of British costume.

This debate has whipped up some deeply patronising stereotypes about women who wear the veil being oppressed and forced to do so by the men in their lives. I won't suggest that coercion and community pressure never applies, but my own prejudices are similarly aroused when I see women waiting outside night-clubs in the dead of winter, wearing less cloth than I have in my scarf. It is difficult for me to imagine making that choice, but it is entirely wrong for me to assume that because it is not my choice, it is not theirs.

However, if we accept that it is a free choice taken by individuals, then we accept that it is a free choice. And as such, it is their choice to do otherwise in the handful of circumstances where they might be asked to do so.

What exactly those circumstances are is another debate entirely. The issue of teaching assistant Aishah Azmi should have been a very simple question of whether or not the lady could do the particular job she was employed to do. It seems surprising to me that so many people have such strong opinions about this specific matter when very few of us are educational experts or know the precise circumstances of the lady’s employment. However, see Blue's posts I linked to above for the more interesting aspects of that debate.

As for integration, so far the problems of integration between Muslims and non-Muslims have most dramatically manifested themselves in men rioting, other men preaching racial hatred, and yet more men blowing themselves up. And all this caused by what women wear? When I wore gold Doc Martin boots under my mother's wedding dress I was described as a fashion disaster, but I never realised so much was at stake...

What people wear is part of communication, but it is a really rather superficial part. It can be very important to the individual; it is very important that I choose my own clothes and I would hate to be dressed by anyone else. This is why individuals who wear the niqab feel so strongly about it. And yet it really ought not to have that much power over other people.

At Goth Weekend, you get some couples where one leads the other about town with a chain attached to a metal or leather collar. What does that communicate? The fact that these people are almost always white (ghostly white), both partners are outlandishly dressed, both partners are cheerful and chatty and one sees as many women leading as men means that nobody worries about it. That and the fact that there are far stranger sights to behold.

In another small rural town, people would find the Goths an intimidating crowd because of stuff like this, but the answer would not be to ask Goths to remove their make-up and wear pastel shades. The answer is for everyone to interact, to demonstrate to one another that there is nothing to be anxious about.

And that is what we all need to do.

Then, we need to work out what sort of problem we have in our society which results in so much fuss being made about a mere garment worn by a minority of women, within a religious minority, within a racial minority. What on Earth are we afraid of?

* That statement might need a lot of qualification. We have had some major disasters, but we have also averted many more, I'm sure of it.

Saturday, October 21, 2006

Another Rock Star Goes Classical

Four baby-faced choir boysProving that it's never too late to reinvent yourself, after two long months in the rock industry, veteran rocker Alexander has decided to do what his agent describes as "a Charlotte Church in reverse". Shaking off his aggressive hard-rock personna, he has decided to release an album of traditional choral works in time for Christmas.

"This sort of thing runs in the family," says Alex, "It was a toss-up between my Dad and Alec Jones who sang Walking In The Air."*

The album, entitled En ducky goo-goo lo is anticipated to become a Christmas classic, the like of which has not been seen since Jingle Cats.

In other sinister rock news (because that picture does look sinister to me), a band that I have actually heard of is headlining Whitby Goth Weekend next week. The Damned (who sang that one about having a new rose, remember?) are joined by the wonderfully named Vampire Beach Babes, Inertia, Trauma Pet and Uninvited Guest. There are others too, but with slightly less striking names.

For those interested in marginally less disturbing baby pictures (only marginally), André has started publishing his own baby photos in anticipation of his fortieth birthday next month.

* That's actually kind of true.

Thursday, October 19, 2006

Prevention better than the cure? #2

Impairment is part of the human condition. We occupy bodies which exist in the material world. And all materials - particularly organic materials - are fragile, breakable and perishable. We share this world and compete with many other organisms, some big, some small, some microscopic. We live in an environment full of spikey bits, high places, volumes of water, hard surfaces, fast-moving objects and a changeable climate. We have fantastic brains, which remain as vulnerable as they are complicated.

Because we are so smart, there are many ways in which impairment and premature death are effectively prevented all the time. There are also ways in which the impact of impairment has been reduced, through medicine, technology and social change. Most of this is absolutely brilliant.

However, all of it has its limits. Maybe there will be some technology in the future which allows everyone to have fully working bodies and brains throughout a lifetime, but none of us are going to live to see it. For the foreseeable future, impairment is part of what makes us human.

I do think that a lot of harm is caused to us all by pretending otherwise. And one area in which causes a great deal of harm, as I started writing about on Monday, is around choices about bringing children into the world.

The point I started making then was that nobody can choose whether or not to have a disabled child. The only genuine choice a person has is whether or not to have a child.

I hope I would never judge any individual who chose to terminate a pregnancy on the grounds of disability; each decision must be very complicated, personal and painful. I sympathise with that, simply because the way people must feel about it, regardless of whether it is the same as the way I might feel. And I can think of a number of reasons why people would choose to do this:
  • The child is likely to die later in the pregnancy or very shortly after birth and it is felt that it would be better to take control of an inevitable ordeal.
  • The child is likely to have a very poor quality of life to the extent that it is felt that no life would be better than that kind of life.
  • The additional stress, effort and difficulty associated with caring for a disabled child makes the parents' plans for their future life unviable and what was a wanted pregnancy is now an unwanted one.
All of these issues are necessarily subjective. Every individual's gauge of what suffering is and how much they can take on will be different. Such is the case about many of the decisions we have to make in life. However, the issue that troubles me is that termination is the only sure-fired way of preventing any of the above outcomes in any potential children. If you have a child, you risk having a disabled child.

Take Down's Syndrome. The most marked aspect of Down's Syndrome is a learning impairment, which can vary greatly, but the average IQ for someone with Down's is about half of average - my IQ is measured at about one and a half times average, to have a gauge of how undramatic this difference might be. People with Down's Syndrome tend to be more vulnerable to various medical conditions and their life expectancy is reduced to middle-age, although some people with Down's have very serious heart problems and can die very early on indeed.

No life better than that kind of life? Well, you'd have to speak to someone with Down's Syndrome. I have known people with learning impairments who are largely contented and others who, for all sorts of reasons, aren't very happy at all. Like the rest of us, it depends on all sorts of things but chiefly the quality of the relationships a person enjoys with other people.

Around 90% of pregnancies where Down's Syndrome is diagnosed end in termination.

I recently came across the following paragraph whilst researching an unrelated matter on the Health Technology Assessment website (the research wing of the UK Department of Health), about antenatal screening for Downs Syndrome;
In general, serum screening is more cost-effective than screening based on maternal age alone at detection rates of about 50% or greater. As the number of screening markers increases, the cost per pregnancy screened increases but, if an extra marker is sufficiently discriminatory, the cost per Down's syndrome birth avoided may decline. For example, the estimated cost per pregnancy screened and the cost per Down's syndrome birth avoided is: £8.90 and £25,600 for the double test; £9.60 and £22,700 for the triple test, and £11.60 and £23,100 for the quadruple test.
Prospective parents in the UK are very unlikely to have a life or death decision on how many Reichmarks it might cost the NHS to have that child. However, this does raise questions about the influences bearing down upon these complicated, personal and painful decisions. Especially given the pretty appalling detection rate of the non-invasive tests available just now (amniocentesis is far more reliable, but far more dangerous to the foetus).

And I find myself very confused about the logic. To be honest, I find it a little sickening that I can even get my hands on a calculated cost per Down's Syndrome birth avoided because the screening and abortion is purported to be all about quality of life, health outcomes and informed choices. But as well as this, these calculations aren't real. Create new human beings and you create disabled people.

So you have a thousand foetuses. One or two of those foetuses will have Down's Syndrome, so you terminate them and save the taxpayer some money. Even if your women take their folic acid, at least another foetus will probably develop Spina Bifida, which if we accurately detect it, we can get shot of too.

Two or three children will be born with Cerebral Palsy. But by the time we know this, or about any congenital sensory impairment, it is too late. And the awful truth is that eighty percent of disabled people make it into the world free of impairment.

Perhaps a slightly smaller proportion in the UK - that's a UN statistic which includes a significant proportion of impairments caused by malnutrition. But it's still going to be most of us who refrained from stating our intention to have a car accident, catch an infectious disease or experience a psychological breakdown at the point of birth.

I suppose the point I am trying to make - perhaps pretty badly because I have been pushing through significant fatigue to make it - is that vaccination, improved hygiene, education, the reduction of poverty and safer living and working environments are all effective ways of reducing our number. It is a reasonable principle that where people can avoid illness, injury and impairment, it makes sense to do so.

However, I suggest that the prevention of impairment through antenatal elimination is both entirely ineffective and ethically misguided. It is far better to be disabled than to not to exist at all.

I've struggled quite a bit with this post. I should have given up but it kept churning round my head and wouldn't leave me alone. I do hope it made some sense.

Wednesday, October 18, 2006

Intermission (Essential Auntie Blogging)

Baby Alex smiling at my GranI am really trying to press on with my editing, but here's a cute baby picture to fill the gap. This is Alexander meeting his great-grandmother, my Gran. He managed to meet all four great-grandmothers and one great-grandfather. Sadly, one of his paternal GGs has died since, but that's still pretty good going.

Yet another one of Alex and GranI hope you're not bored of this baby yetHe was having a good old natter with Gran. He clearly has a lot to say for himself, which some might claim runs in the family.

The child is just not yet two months old and he's already sleeping right through the night. Imagine!

He is also dancing in time to music and really trying very hard to smile. I'm looking forward to November when I next see him, and hope to be able to have a proper conversation with him by then.

While I'm here, a story for all of us whose poor co-ordination has lead to little accidents.

Monday, October 16, 2006

Prevention better than the cure? #1

In the comments following my post about T4, Mary recounted a conversation with an acquaintance about the prospect of Mary having children at some point. This exchange concluded;
THEM: But you're ill, so there's obviously something wrong with your genes that let you get ill. If you got pregnant, your kid would just be another burden on taxpayers like me. You've got a social responsibility to put a stop to it.
Clearly, this person had a number of 'issues'. As Mary had already pointed out to them, she doesn't even have a heriditary condition. But I wanted to write a few things about the prevention of disability, and genetics is a good place to start.

First off, to recap, let’s return to the primordial goop. Cells are beginning to form. Very many different cells, with a great variety of qualities would have come into being and gone again. The very first one to make any difference to anything was the one that divided into two cells, where those two cells divided again into four. But others did exist.

And this represents the only ‘order’ in the otherwise random process of evolution; the code we know about is the code that just so happens to have got this far.

Frankly, the fact that you are sitting there, reading this, is a miracle. Your genes just happen to have been reproduced over squillions of generations, through all sorts of mutations and incarnations; they survived when many godzillians of others came to a full stop. You are an evolutionary success story – even if you are severely disabled, happen to be facing premature death or find yourself unable or disinclined to have children. You are really a rather amazing creature just for existing on Earth in 2006AD, four billion years since that first cell division. Don’t waste it!

So what if you do have dodgy genes? There are five possible explanations for why you possess any given piece of genetic code;
1. It does something big or small which enabled your predecessors to survive and successfully reproduce in the particular set of circumstances they found themselves in.

2. It has never done any harm and has survived purely by chance.

3. It mutated into what it is at the point of your conception.

4. It does some harm but not enough to seriously impair survival and successful reproduction.

5. You were created in a laboratory by a mad scientist, which is why you have oak leaves instead of underarm hair.

A proportion of genetic conditions fall into category (3). Mutations are happening all the time and sometimes a small change can make a massive difference – like a typo in an HTML document. Which makes it sound like a mistake. Mutation is not a mistake. It is just a random but essential event without which we would still be single-celled organisms.

This means that, for example, there will be a proportion of people with Downs Syndrome in every generation that is conceived; this mutation is just something that happens. There are risk factors such as the age of the mother, but still most Downs babies are conceived to women under thirty-five simply because most conceptions take place in women of under thirty-five.

Anyway, far more genetic conditions come into the (4.) category; the mutation did harm in the past, but not enough to seriously impair survival or reproduction. This can mean one or a combination of two things.
(a) The mutation frequently causes illness or impairment, but it is either so mild not to make a great deal of difference or it does not usually manifest until middle or old age.

(b) The mutation only causes illness or impairment some of the time. Most people who carry the affected bit of code will be completely unaffected.
Category (a) conditions which cause significant long-term impairment are fairly unusual. Huntington’s Disease would be an example of this; the affected gene almost guarantees illness, and having a parent with HD gives you a 50-50 chance of getting sick yourself, only the average age of onset is about forty, by which time most people will have established families.

The vast majority of conditions with any genetic cause come under category (b). Even with something like haemophilia, the basic pattern of which we all know about from the history of our Kings and Queens, only one out of every four children a carrier might give birth to is likely get sick (i.e. one in every two boys will be affected, one in every two girls will be carriers).

Most conditions are far less prevalent within affected families, partly because most conditions require a combination of genetic and environmental factors in order to manifest.

We know, for example, that our genes are somehow tied up with the development of Multiple Sclerosis. We know this because where you have a close relative with MS, your chances of getting sick yourself increase from about one in 750 to as much as one in forty. Which is still only one in forty.

Perhaps most notably, if you are a monozygotic twin - if you have exactly the same DNA as a person with MS - then your chances are increased to one in three. Which shows that this condition is not purely about genetics, or else it would be one in one. Why one twin might get sick where the other does not could be due to all number of subtleties we are yet to understand.

This pattern is similar with schizophrenia, lupus, certain cancers and a great many other conditions. Most disabled people have no reason to expect to have disabled children.

Friday, October 13, 2006

Happy Birthday Superbat!

As keen observers will be remember from last year, today is the birthday of my Mum, Margaret Thatcher, Paul Simon, Nana Mouskouri and my brother-in-law's father, Keith. I hope you all remembered to send a card to each of them.

Some of you may know my mother, not as Mum, but as Superbat. And you may be wandering how it was that my mother, a humble school secretary from rural Suffolk, became this legendary figure throughout the world?

Superbat, Happy Apple and AlexanderWell, when Alexander was born, there was the issue of what the grandparents would be referred to. The paternal grandparents embraced Grumpy and Grumps in ironic referrence to their cheerful dipositions. My Dad insisted that he wanted to be called Sir and the less said about that the better.

Mum would naturally have become Granny Kelly, only there already is Granny Kelly who is known as such far and wide. So she was struggling somewhat with how she wanted to be referred to.

At primary school, several of our schoolmates referred to Mum as Supergran. Readers of a certain age may remember a television programme of that title. Readers of a similar age may recognise the Happy Apple in the photo on ther right. So why Supergran?

One evening, my eight-year-old sister confessed to Mum that she had arranged to have a scrap with some boys in the playground after school the next day. The circumstances under which this dishonourable arrangement had been made have been lost in the mists of time. In any case, Rosemary had lost her nerve rather, but didn't want Mum's intervention.

Mum intervened. I can't be sure of exactly what happened as my six-year-old self was waiting at the other end of the school, wondering where both my sister and mother had got to. But this is the way it was described to me.

The playground cleared after school, leaving Rosemary and these four boys who she was going to fight. My mother had positioned herself and her trusty bicycle behind the wall. The moment the stand-off descended into a scuffle, Mum leapt on her bike, rode into the playground, leapt off her bike and took hold of the collars of not one, but all four boys at once. She then dragged their wriggling bodies into the school building to present them and this sorry tale to the headmaster, a mortified Rosemary following close behind.

Word soon got around and thus, being short of popular female role-models at the time, my thirty-something-year-old Mum became known as Supergran to the children at school. And when Alexander was born, she declared that she did not want to be known as Granny, but as Supergran.

I was talking about this on the phone to Rosie, when the voice of a certain young man who happens to be brother-in-law chirps up in the background, "Superbat, more like."

Superbat surveys the Paris skylineBeing an incorrigible snitch, I was compelled to inform Mum of this slander. And she said, "Yes! That's much better. Henceforth, I shall be known as Superbat!" and she began practising heroic catchphrases such as

"Watch it! I'm the grandmother,"

"I can be a mean mother's-mother when crossed," and

"I was changing nappies when you were still wearing nappies, punk."

Wednesday, October 11, 2006

Three bits of silliness from BBC News

1. The first related to a very serious and unpleasant story about a serial rapist. Nothing funny about that but the police have issued the least helpful identikit picture I have ever seen.

2. From Germany;

A large area near the town of Halle was cordoned off after a "flabby red, orange and green substance" was found by the road, Reuters reported.

Fire officers in protective suits spent two hours inspecting the substance before concluding it was jelly.

3. Following the non-news of higher obesity rates among people in the North of England as opposed to the South, the BBC opened an ill-advised Have your say forum entitled Why is the north fatter than the south? to which the comment most recommended by readers reads simply

Cos they ate all the pies.

David Morgan, Maldon.

The other responses are quite amusing, all the usual cliches about the North-South divide played out. The second best comment was from someone in London who argued that after the cost of housing and tax in the South (seemed to think Southerners paid more tax) people in the South simply couldn't afford to eat as much...

Tuesday, October 10, 2006

You were dressed in pink and blue just like a child

We received our first Christmas Card last week. Admittedly, it was from the National Trust, so it doesn’t really count but it’s quite pretty and I’ve put it on the shelf. And I must confess, I have started Christmas Shopping. As I have to draw it out like this or else it won't get done.

The first person I shopped for was Alex, my unworthy nephew. He is unworthy because, whilst on the phone to my sister, I asked if he had any messages for me.

"Do you have any messages for auntie Goldfish?" Rosie asked him and the child simultaneously and very loudly passed wind from both ends on cue.

So it's clothes for him this Christmas. Here he is wearing his zebra outfit that I chose for him (no, he is a zebra, not an escaped convict). So I guess you're all wondering what is hot and what is not in the world of miniture fashion? Well, never mind, but just in case...

Well, as with adult fashion, animal-prints are the new polka-dots this autumn. To get Alexander's look, buy the precise same sleepsuit which came in a zebra-themed three pack for £10 from Mothercare. Or for the baby with a conscience and £40 to spend on something he will grow out of within a few months, there are these outfits at Cheekaboo, which sells fair trade baby clothes.

black on red portrait of Che GuevaraFor just £11.99 Toerag Clothing sell such essentials of youth as Che Guevara baby-grows and t-shirts up to four years old. Up market at 12.99 Nappyhead sell t-shirts for baby with various amusing slogans such as Sleep is for the weak and I only cry when ugly people hold me.

an incredible tie-dye baby-growHowever, by far the best place to buy shop for the discerning baby-about-town is both fair trade and not painfully expensive; Su Su Ma Ma Worldwear. Take this picture on the right. With such an outfit, the little gentleman would still look as good whatever milk-fuelled mayhem he got up to in it. They even have a section for the Goth baby. My personal favorite is their batik Starchild range, and I am keen to get Alexander one of their pixie hats - the child can't grow up without any embarrassing photographs taken of him.

When discussing such things with my sister, Rosie challenged my assertion that a hundred years ago, boys would be dressed in pink and girls would be dressed in blue. This is actually true; I thought everyone knew this.

Blue was considered a feminine colour on account of the fact that the Virgin Mary was traditionally depicted wearing blue. Why was she wearing blue? Well the best way of making blue (or more accurately ultramarine) tempera back in the Middle Ages was to use Lapis Lazuli, the semi precious stone. Naturally, crushing this up to make paint was a very expensive business, so blue paint was used very sparingly. As such, when the nativity and other scenes with Mary in them were painted, they would save the blue for her cloak, since she was the most important character.

The qualities associated with Mary; modesty, compassion, maternal love etc., were those qualities little girls were expected to aspire to and blue was considered the colour representative of such qualities. Meanwhile, pink was considered a toned-down red and red, through it's association with blood, military uniforms and so on, was associated with energy and vitality and all things masculine.

For some reason, this all turned around in the twentieth century. I'm not really sure why. And this wasn't the case in all cultures either, of course. I understand in some Asian cultures, little boys have long been dressed in blue to protect them from evil spirits, although little girls (the evil spirits being welcome to them?) have not had any particular colour associated with them. Other cultures, I daresay, don't colour-code their babies at all.

There have been some studies which appear to suggest that men and women, boys and girls are someone naturally more receptive to different sorts of colours. Nobody can escape the way that pink is used in marketing to grown women. These two incredible shops are pretty extreme, but it's all around us.

But as I said to Rosie, take young Alex. He doesn't own anything pink. He has been surrounded by blue things and dressed in blue from the word go (this isn't anyone's choice; there aren't too many choices besides pink and blue). Thus even at this young age, where he still has no concept of sex or gender, Alex would probably exhibit a preference towards blue objects as opposed to pink or red ones. At just six weeks old, he will already associate the colour blue with something about himself.

And yes, I'm sure this is all entirely superficial and nothing to be concerned about. But given that we do this with colour, it is easy to see the way that step by step, drip by drip, gender is constructed.

Sunday, October 08, 2006

So what do you reckon?

For those who can't see for one reason or another, I have been fiddling with my Template in a dramatic fashion. I hope this might make it easier to read.

I have considerable difficult reading long lines of text, but I also struggle finding the next line. I hope this may be a happy medium, but I really would appreciate feedback; I am no expert on web accessibility so there may be something major I have missed.

I stole the template from Thur's Templates and I've probably not finished playing with it.

Yes, yes, I am working. Actually now my cold has just about cleared, I'm feeling pretty good and pretty positive about the editing process. But one does get easily distracted...

Actually this font is too small (or the font I have realised I am writing in at the point I posted this - it may be a better size by the time you read it).

Friday, October 06, 2006

Ten Points about T4

A mass grave of disabled victims of the Holocaust was unearthed yesterday in Germany.

There are lots of important differences between Aktion T4 and what was experienced by Jewisah people and others. I think it is these differences, rather than the similarities, which provide the most important lessons about the more sinister aspects of disablism in society, as well as the ways in which we do have perhaps more power than other oppressed groups. I hate to be sensationalist about these things, and cry, "It's all going to happen again!" but it is a important part of World History and a very important part of the history of disabled people.

Meanwhile, most people I know think T4 is a Saturday Morning kids programme on Channel Four.

I’m sorry to do a list, but I wanted to write something about this, I still have only half a brain and a lot to be getting on with.

1. Disabled people went first. This was partly to do with opportunity; many disabled people, particularly those with mental ill health, intellectual or neurodevelopmental impairments, were already incarcerated in hospitals and asylums. The first victims of T4 did not need rounding up. Their location in medical institutions also provided the opportunity to experiment on efficient ways of dispossal.

2. Similar language to the language we use today around the abortion of foetuses likely to be born with impairments was employed in persuading parents to give up their disabled infant children. This is not a pro-life point, merely an acknowledgement that concepts around disability and suffering are very easily abused. Naturally, many parents fought very hard to save their children, even taking the family into hiding to keep them safe.

3. It was all above board. Hitler was usually careful not to give explicit written instructions for mass murder, but he made an exception with T4. There isn’t a nice way of saying “We’re going to kill the Jews,” but once again, terms like euthanasia and mercy killing can be wildly misinterpreted. It should be pointed out that despite this, the regime was not open about what they were doing; thousands of death certificates were forged citing natural causes of one sort or another and random ashes sent to loved-ones.

4. It could be, in a sense, relatively easy to rescue disabled people. Doctors had a great deal of power and some did save thousands simply adjusting a diagnosis, for example. Many of relatives of the disabled people in institutions removed their relations to care for them at home when it became clear that something very untoward was happening. However, the combination of disability and poverty was a pretty deadly one, as it can still be today.

5. The great thing about being disabled (and/ or gay, come to think of it) is that we are distributed fairly evenly throughout the population. Goebbels (as well as having no balls at all*) had clubfoot, which is both congenital and hereditary. Even Philipp Bouhler, the man in charge of Aktion T4 was described as ‘lame’ after injuries sustained in the First World War. I am sure there were quite a number of top Nazis who had some sort of impairment or other.

6. On a related note, the outbreak of war coincided with a curious rise in the number of disabled Germans (funny how that happens) . Since Nazi disablism was never really about genetic purity, people with acquired or non-hereditary impairments (like cerebral palsy and other forms of brain damage) had never been safe. However, the systematic killing of newly-disabled wounded soldiers would have been totally unacceptable and their existence probably contributed to the early cessation of the programme.

7. The T4 was also part of the Holocaust that was subject to significant vocal criticism within Germany at the time, particularly from the Churches, both Catholic and Protestant. When T4 was officially cancelled in 1941, four years before the end of the regime, it was Hitler’s explicit instruction to do no more to provoke the Churches. Disabled people would continue to die, but not in such a systematic way.

8. For this reason, even though disabled people were the very first victims of the Holocaust, a relatively small number of disabled people were killed just for being disabled, ‘just’ hundreds of thousands with hundreds of thousands more people forcibly sterilised. There would have been millions of disabled people in Germany and the occupied countries who escaped both sterilisation and death.

One doesn't need to point out that there were probably very many more disabled victims of the Holocaust among those targetted because of their religion, politic beliefs, ethnicity or sexuality.

9. Despite some sense that society actually saved its disabled people, there is some speculation that post-war trials were relatively lenient on those who committed crimes against disabled people as opposed to other groups, particularly where the victims were people with mental ill health, intellectual and neurodevelopmental impairments.

10. In a sense, the Nazi Regime had good reason to fear the crips, as it was two disabled people who eventually lead the Allies into victory against Nazi Germany, in the form of Winston Churchill, who had a speech impediment and depression and Roosevelt, who had post-polio syndrome and was a closet wheelchair-user.

On an only vagulely related note, the latest edition of the Disability Nation podcast features Diane Coleman, who helped to found Not Dead Yet. I still disagree with her, but it is a quite a powerful (if rather lengthy) interview.

* Goebbels did father children,thus proving that he had a pair. However there is some evidence to suggest that Hitler did indeed, only have one ball. Questionable, but not entirely inconceivable.

Thursday, October 05, 2006

Zzzzz Zzzzz Zzzzz

This does not bode well. I think I may be cursed. I really do have a cold though, so it's not some psychosomatic need to sleep as opposed to getting any work done.

Never mind, this will pass and there are useful things I can do until it passes. When I'm not asleep.

Tuesday, October 03, 2006

On top of the wardrobe

Things are not going so well. Mostly, I think, because I have had two crappy health days. Mostly.

I imagined the first chapter would be relatively easy. I have been confident of its content from very early on and, being the first thing I wrote, I thought I had gone over it often enough already. Alas, no. I find
  1. I am still not entirely confident about the pace and order in which the reader should be asked to digest information. Or what the reader really wants to know. Or anything..

  2. Perhaps because of the time at which it was written and the attention it got, the first chapter is cringingly over-written. Such words as parlance, illuminated and aura have crept into the text since I last looked; I certainly didn’t put them there.

  3. I found the first example of a simple, but vital, piece of information that has gone missing.

  4. The whole thing is bloody awful.

  5. I’m still getting new ideas, little tweaks to the very plot which would improve things. I’m not supposed to be going that at this stage, but it’s difficult to ignore.

Oh well, onwards and upwards. If it wasn’t a challenge, I would have got it done much sooner. And as a wise man once said to me, if it wasn’t a challenge, it wouldn’t be worth doing at all. He reckoned.

I have a cold.

Sunday, October 01, 2006


Okay, I am working now but here are some things that recently made me giggle;

Lisy Babe has a photo which says much about contraception in Northampton

Miss Prism has Famous Cheese on Toast Recipes

And finally, in response to my post about getting my key stuck in the door, an Anonymous commenter linked to this old favourite (I did try to set up YouTube so I could put it on my blog, but failed).