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.

About 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.

Another Rock Star Goes Classical

Proving 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.

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.

Intermission (Essential Auntie Blogging)

I 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.

He 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.

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.

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?

Well, 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."

Being 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."

The First Ever Disability Blog Carnival

At Disability Studies, Temple U. Penny has done a splendid job; well worth checking out.