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In one bloody bout Brussels reveals its true hypocrisy
Last week was a bad week indeed for supporters of the European Union. Strangely, however, they don’t seem to have noticed. On the contrary, there has been a lot of crowing and cheering among Europhiles, particularly among members of the European parliament (MEPs) and the Brussels establishment.
They are convinced that their public rejection of Rocco Buttiglione because of his views is a triumph both for democracy and for the European Union and everything it stands for. Yet in bringing down Buttiglione, they were and are in flagrant breach of the fundamental principles of the EU. It is very odd.
Buttiglione is, or was, the prospective European commissioner for justice and home affairs, appointed by Jose Manuel Barroso, the incoming president of the European commission. Buttiglione’s appointment was tactless.
His outspoken views on gays and women were so offensive to many MEPs that they were inspired to get together and bully Barroso into reshuffling the commission and dumping Buttiglione and his unspeakable opinions — contrary, however, to the guiding principles of the European dream.
These principles are clearly laid out in the Charter of Fundamental Rights of the European Union. Buttiglione, whatever his views, is surely as well entitled to those rights as any other European but he has been denied them. The charter undertakes to respect the diversity of the cultures and traditions of the people of Europe.
Article 10 guarantees freedom of thought, conscience and religion, including the freedom to “manifest” one’s beliefs not only in worship, but also in “teaching, practice and observance”. Article 11 guarantees freedom of expression to hold opinions and exchange them “without interference by public authority”. Article 21 states that any discrimination based on any ground such as a religious belief, political or any other opinion shall be prohibited. And just in case anyone had somehow missed the point, Article 22 declares that the EU shall respect cultural and religious diversity.
Well, either you respect cultural and religious diversity or you don’t. Personally I don’t. I don’t respect Buttiglione’s view, religious, cultural or other, that gays are sinful. I think it’s wrong and offensive. And there are many other mainstream religious teachings and cultural practices that I don’t respect either such as the caste system, the subordination of women and the suppression of embryo research, to name a few. I disrespect them. I don’t see why I should be expected to pretend otherwise. Nor do I see why I should be denied the freedom of speech to say so.
When people prate on in this country and doubtless all over the rest of Europe about “celebrating diversity” (as in Article 22), I find my blood pressure rising. Why is that now written into practically every company’s mission statement?
Who was it who decided that we are all duty-bound not just to respect, but to “celebrate” diversity? This has crept up on us rather unobtrusively and very fast. As far as I’m concerned there are a great many cultural attitudes and religious beliefs around that I find distasteful or shocking; I find it deeply alarming that in Britain there seems to be a deliberate and increasing conflation in activist literature between culture, religion and race, so that criticising a cultural practice — such as forced marriage or primary purpose marriage — is tantamount to racism.
However, the truth is that hardly anybody does respect diversity, however European, when real convictions are involved, as the defenestration of Buttiglione has made absurdly plain. The MEPs don’t truly respect cultural and religious diversity any more than the Pope does or than Buttiglione. And in his case, far from respecting it, the MEPs aren’t prepared even to tolerate it. Yet they don’t seem to have the slightest suspicion of the comic absurdity of their position or of the ridiculous light it casts on the EU.
The Buttiglione fiasco is an elegant demonstration of what is wrong with the new European high culture as demonstrated in Brussels. It is riddled with hypocrisy and confusion and the kind of totalitarian attitudes that the EU was created to resist. After all millions of people right across Europe are, like Buttiglione, Catholic. Many presumably accept the teaching of the Catholic Church that homosexuality is sinful and abortion too. And many millions also agree with at least some of his views on the role of women.
If those views make him unfit for office, what about them? What about those of other faiths with other conservative views? Should they too be cross-questioned by new EU thought police about their fitness to work in companies committed under countless EU directives to celebrating diversity and promoting equality?
Comically hurried along by poor Buttiglione, we Europeans have arrived at an important fork in the road. We cannot go down both paths at once. One sign is marked the Usual Old Pragmatic Muddle, the other sign is marked the European Project.
The European Project, contrary to its claims about rights and respect, is the endeavour to impose on everyone the values of today’s supposedly enlightened European intelligentsia — that continental club of the like-minded, who have more in common with each other than with their own fellow countrymen and women.
Anyone with any experience of European-led directives in business or services, dreamt up by this intelligentsia, will be well aware of how culturally manipulative many of them are, and are meant to be. The project is an attempt to impose a cultural, religious (or rather irreligious) and political uniformity on 400m very various people.
You could call it militant secularism or you could see it as universal modern values — Europhiles already speak of a union of values. Either way, imposing values — for better or for worse — is entirely at odds with tolerance and the decency of muddled pragmatism. Europeans are going to have to choose.
For myself, like the Irishman in the joke, I wouldn’t start from here. I wouldn’t start with a hugely ambitious charter of rights and freedoms, many of which are mutually exclusive as any schoolchild could have pointed out in the beginning. We’ve just seen last week that religious freedom and freedom of speech mean nothing when they clash with the European ideals of equality.
However, if I did have to start from here, and I suppose I must, I would not choose the way of the European Project. That ways lies absurdity, hypocrisy, intrusion and waste. The European Project is not only statist; it is helplessly bureaucratic, all the more so since it is pursuing unachievable and contradictory ends.
Last week saw not only the affaire Buttiglione. It also saw the signing of the new European constitution, in great pomp and splendour in Rome, despite the fact that at least 10 countries intend to have a referendum and at least three may well reject it. Bloated folly and presumption, coupled with hypocrisy and confusion. That surely cannot be the way to take.
The Sunday Times | Sunday, October 31, 2004 | Comments (0)
Have you stopped beating your pregnant wife yet?
‘Does your husband beat you up?” Last week the government announced bold new plans to make doctors and midwives routinely ask all pregnant women whether their husbands or boyfriends are abusing them.
Imagine the scene. A newly pregnant woman happily goes for her first antenatal check-up, only to be asked, at this emotional moment, the most intrusive, manipulative, personal questions about her relationship with the father of her baby.
Imagine her outrage and distress. And these questions are intended not just to check whether he has, in fact, ever smacked her about, but whether she feels he might and whether he’s ever seemed threatening or upset her, or just been rather nasty.
Such questions can be couched in code; that might be intended to be tactful but it makes it easy to misunderstand them, and to misunderstand the answers too. There can’t be a couple in the land which has never had a single episode of rage and threats, of angry unhappiness. And if the poor woman’s answer, at such an emotional time, is remotely positive, what do you suppose the results will be? You can bet your family credit at your brand-new local casino that she will be put on a register of some sort. An at-risk list. And so necessarily will her baby and its unlucky father, especially if there are other children involved.
Indeed, a health worker who failed to make a note of her suspicions would surely be failing in her duty. Who knows what use such information — right or wrong, or simply misinterpreted — might be put to in future? This monstrous new initiative is a perfect example of what is wrong with the new Labour culture today. It is based on the old socialist assumption that one size does and should fit all. Just because a minority, sadly, needs paternalistic attention, everyone must be subjected to it; because of a few bad fathers, all good fathers must be suspect.
It shows Labour’s habitual, unthinking contempt for privacy, and for the relationship between doctor and patient. It displays the old left assumption that all state sector workers should turn state’s evidence, and state’s investigator. It shows a disrespect for doctors and nurses who would as a matter of course, if they are any good, be watching and listening for signs of trouble with all their patients anyway.
It also shows new Labour’s habitual folly in imagining that directives and form-filling and general micromanagement can turn an inadequate doctor or nurse into a good one. It shows the government’s usual indifference to the dangers of collecting and storing sensitive information. And, in this case, it is based on exaggerated assumptions and exaggerated statements.
Why does domestic violence, like paedophilia, I often wonder, attract exaggeration? Of course, both are truly horrifying, but exaggeration doesn’t help. Actually I think it just leads to outrage fatigue and to unhealthy scepticism. I have come to feel very sceptical myself.
At last week’s conference announcing the government’s new plans for health workers to quiz pregnant women, several Labour ministers used exaggerated alarmspeak; “one in four women will experience domestic violence in their life time”; 30% of domestic violence either starts or will intensify during pregnancy; “a major social problem”; “horrifying statistics”.
That does sound horrifying. But if you start to unravel the figures and the phrases, something different begins to emerge. First of all, “domestic violence” is not at all what you might suppose. It’s not pure Bill Sikes and Nancy; it’s not simply a brutal man raising his fist or his belt to a terrified woman.
According to the new Department of Health resource manual for care professionals, the term covers a multitude of sins, “a continuum of behaviour ranging from verbal abuse, through threats and intimidation, manipulative behaviour, physical and sexual assault and even homicide”. That doesn’t leave much out.
Section 2 of this manual repeats the claim that about one woman in four is likely to experience such abuse at some time in her life. Obviously. With a catch-all definition like that, the figure must be nearer 100%, especially as the definition is extended elsewhere to include “financial” abuse.
Later, the document rather confusingly states that exactly the same proportion of women (23%) are physically assaulted by their partners at some time in their lives (excluding sexual assault), which sounds very much worse. (The Home Office figure, from the British Crime Survey, is lower, at 18.6%). But, at the same time, only 4.2% of the female population say they have been physically assaulted within the past year — a hugely different proportion of women; from very common to uncommon.
Still, if you accept the higher figure, it does seem alarming that between 16 and 59, a quarter of all women may have suffered some sort of domestic physical abuse.
However, the figure involves one or more episodes; so it could mean just one, violent and bitter argument, never to be repeated, or a couple of shameful drunken lapses, much regretted. Or it could mean the sort of serious, repeated criminal assault from which women (and their children) need very careful protection. I feel the figures suggest that the majority fall into the first category, otherwise there’d be more than 4% each year.
And most importantly, the scary figure of 23% also means that the vast majority of women, more than 75%, have not suffered even the slightest incident of domestic violence.
Hurting a pregnant woman is perhaps the worst kind of domestic violence — hurting two or more people at once — and it seems to have a terrifying impetus of its own. The health minister, Melanie Johnson, stated that 30% of domestic violence either starts or will intensify during pregnancy. That sounds very bad, but I feel sceptical about the research cited; it appears both narrow and limited.
Nor could I get government figures for what proportion of women suffer a domestic physical assault during pregnancy: it seems that there aren’t any figures. However, if domestic physical assaults are happening to “only” around 4% of women a year, across the whole female population, one must infer that it is not high in pregnancy.
I am not trying to make light of serious domestic violence. It is a terrible crime. and it causes terrible misery from generation to generation because it affects not just the woman but her children and their health as well. However, (as with paedophilia) there seems to be a tendency for activists in this field, who are regularly confronted with its horrors, to imagine it exists where it doesn’t.
Indeed, activists claim the true figures of domestic violence against women are much higher than we imagine, because women are ashamed to admit to it.
Maybe so — though that is self-evidently a dangerous attitude to statistics — but it does not amount to a licence to cross-question and monitor every single pregnant woman in the country. That is, without exaggeration, an outrage and a very typically new Labour collectivist outrage.
The Sunday Times | Sunday, October 24, 2004 | Comments (0)
It’s a safe bet that nobody wants a gambling binge
‘We are surrounded by crying needs for this, that and the other. People call out ceaselessly for more nurses, more doctors, more maths teachers, more childcare, more flexitime, more money in retirement, more rights for the disabled, more money for the Third World and lots of new laws to provide them. The list of things people clamour for is endless. Yet not once, ever, have I heard the slightest hint of a need — still less a crying need — for more gambling.
I’ve never met a single person who longs for more casinos or more betting shops. There has never been a mass demonstration, or even a little one, demanding the freedom to gamble.
The dinner tables across the country are not, and never have been, burning with passionate demands for the liberalisation of our strict gambling laws, even though passionate demands and crying needs are my bread and butter and I tend to go looking for them.
Yet somehow, despite all the crying needs, including the prime minister’s determination to meet the crying needs of most of Africa, this government has spent a great deal of time and money to offer us much, much more gambling. It is very odd.
In the next few days a bill will be brought before parliament which will open gambling right up. If the bill becomes law, it will permit huge super-casinos in resorts and big cities, with dozens of gaming tables and machines offering seven-figure jackpots.
In smaller casinos the machines will offer £2,000 prizes and places such as bowling alleys and motorway service stations will be able to call themselves “family entertainment centres” and offer slot machines. Who benefits? It’s true that gambling presents quite a problem for libertarians. They believe, as I do, that as far as possible we should be free to do what we like. The presumption must always be for freedom, so long as it hurts nobody but oneself.
So I suppose I ought to feel that while gambling seems to me irredeemably tacky and unaesthetic, and although I know a small minority of people become problem gamblers, none of that is any reason to deny people the freedom to go to monstrous casinos and play mindless fruit machines, eat revolting fast food and drink far too much and lose their hard-earned money, or indeed their welfare payouts.
Las Vegas seems to me a place of infinite horror, the kind of phenomenon that gives freedom and free markets a bad name. Betting shops are infinitely depressing and the roulette wheels recently installed in them are a real menace. And gambling carries risks of addiction, too, although for less than 1% of the population. Even so, there is a powerful argument to respect people’s freedom, if they do indeed demand such things. But do they? I rang the Department for Culture, Media and Sport (once nicknamed the “ministry of fun”) to ask what evidence the government had sought about the demand for the liberalisation of gambling. After several interesting and useful answers to questions which I had not in fact asked, I received my answer. I was directed to an NOP world survey from April this year.
It was a list of questions asked about the public’s attitudes to various types of gambling, from very favourable to very unfavourable (including “don’t know”), and then broken down by income, location and so on.
If you are looking for active, widespread public demand, there simply isn’t any. You would naturally exclude the people who were very unfavourable, unfavourable, neutral and those who don’t know: these people are not in favour. Not in favour of fruit machines (66%), not in favour of gambling at betting offices (84%), not in favour of betting exchanges (95%) and not in favour of casinos (86%). Indeed only 1% were felt “very favourable” about casinos and only 12% felt “favourable”.
Government summaries of this survey read rather differently, but you can check the figures for yourself on the ministry of fun website. We can conclude then, on the evidence the government had, that most people don’t like gambling and only a tiny minority are really keen on it.
That hardly justifies a huge liberalisation of gambling by a populist government at a time when it is ceaselessly busy on more pressing matters. Still, minorities are entitled to freedom. Libertarians must beware of the tyranny of the majority.
There can be no serious objection to greater freedom to gamble, however much one disapproves of it, if gambling is properly regulated. And there has been no serious objection so far.
Some tabloids are running a frenzied campaign against this bill. “Gambling with our futures”, “Society at stakes” and warnings against an explosion in gambling are in evidence, but they have been very much undermined by bad statistics. The figures bandied about of an explosion in gambling are simply mistaken.
However, we can hardly suppose that the government’s determination to liberalise gambling is due to its deep respect for the liberties of minorities. Their totemic persecution of the foxhunting minority speaks for itself.
It is really most odd that an administration which intrudes ceaselessly to protect us from ourselves — from our proletarian preference for fatty food, our reckless behaviour with conkers and the awesome risks of our school trips to our local pool — should somehow feel obliged to change the law radically and expose us to all the risks of games of chance and the rapacious culture of Las Vegas here in Britain. This radical liberalisation of the law is not consumer-led nor is it liberty-led.
One cannot help assuming it is provider-led — the providers being the big gaming companies, some of them American, who stand to make squillions if Britain gets lots of huge new casinos.
The government in turn will get masses of (much-needed) new tax income and can hope for new jobs and regeneration in the places where the new casinos will be built. Cynics say that it would hardly make Blackpool more horrible or the Millennium Dome more distasteful, so why worry? However, Tessa Jowell’s department would say that the bill is driven by regulation: a determination to replace the outdated directives of the 1960s with new, more careful legislation that reflects and anticipates changes in technology, such as internet gaming.
That makes some sense but it does not entirely convince me. Why no outright ban on roulette wheels in bookies’ shops right away? Why no co-ordinated national regulations about the number and the placing of mega-casinos? There also seems to be confusion between different agencies. Why this pseudo-free market? Why permit one-armed bandits on the motorway? New Labour is like Dr Dolittle’s pushmi-pullyu beast, frantically trying to progress in two opposite directions at once. It is a preposterous spectacle.
It lets the free market rip in those areas where control might appeal even to the most ardent libertarian, such as drinking and gambling, but lets regulation rule in areas where we should be left alone. New Labour seems not only confused but tired. This hardly represents the joined-up government which Tony Blair so proudly promised.
The Sunday Times | Sunday, October 17, 2004 | Comments (1)
The families we fail when baby Charlottes go home
Amid enormous publicity, a High Court judge decided last week that Charlotte Wyatt, an extremely disabled baby, should be allowed to die without additional treatment when her condition deteriorates. I feel strongly that this was the right decision in the circumstances, though I know there are others who disagree.
However, there is a feeling that everyone shares, I am sure, and that is one of great sympathy with Charlotte’s parents, who longed for some sort of miracle that might save their baby and enable them to take her home. Everyone can imagine their anguish.
And I wish that we as a society felt the same profound sympathy for people who are indeed able, sooner or later, to take their severely disabled babies home. What they face, many of them, is a disgrace in a civilised society. However, it does not make the headlines.
A severely disabled baby needs constant care, often round the clock. He or she may have terrible feeding problems, or cry inconsolably for hours, or be disturbed by frequent, frightening fits. Very soon after bringing the child home, the mother and father will be exhausted.
Their exhaustion will be made much worse by all kinds of painful realisations. They will be forced to neglect any other children they might have, causing resentment and guilt all round. One or other parent, or possibly both, will have to give up work, thereby impoverishing and isolating the family. A disabled child means a disabled family.
The relationship between the mother and the father may well be threatened — disability often leads to separation, when one person simply cannot stand the strain and walks away.
It begins to dawn on everyone that this problem is for ever — their child will have the needs of a baby for life and he or she will never be able to live independently.
Under these terrible pressures, a family needs a great deal of help, and it is bound to be expensive. Yet in this country today, to our shame and despite our much vaunted welfare state, such families get disgracefully little help from local authorities.
There are about 49,000 severely disabled children in Britain. Almost all of them (91%) live at home. Nearly half of all the beleaguered and exhausted families of such children (48%) received no help whatsoever from outside the family, according to a study by the learning disability charity Mencap in 2001. A further 30% received less than two hours’ help a week with tasks in the home. That is to say, nearly 80% get next to no help.
This must be one of the most painful realisations for parents of such babies: you cannot expect the help you need to appear automatically, or as you would choose, even though we live in a world buzzing with slogans such as “care in the community”, “choice” and “empowerment”. There is a shocking disjunction between the vast sums spent on a baby in neonatal intensive care and the small amount spent after the baby goes home.
Even woe, it is extremely difficult for parents to discover what help might be available from the local authorities, and, having found out, it is very hard to get it. You have to fight for it, with a large number of agencies, that may argue among themselves, shunting responsibility around.
As one parent said in the Mencap study: “Social services don’t tell you what you are entitled to. You need a degree to understand their manuals. GPs don’t have the time to tell you about other things.”
Doctors are all too often too busy to give more than a couple of minutes to anybody, and the National Health Service and the social services are often so overstretched that they are in effect limited to crisis management, to the neglect of chronic long-term need.
According to Disabled Children and the Law (2001), by Janet Read and Luke Clements, despite the clear legal obligation to provide care to severely disabled children, many children of school age are forced to get by with little or no help from social services, the NHS or education authorities.
It is hardly surprising, then, that 80% of families with severely disabled children say that health and social services are not properly co-ordinated and 37% of families have been in contact with eight or more professionals, according to the Mencap study. There is little respite or residential care.
According to government figures from 2003, only 20% of families with a disabled relative get any short breaks, and 34% of these are receiving fewer than in the previous year. The unmet need for respite care is overwhelming. Baby Charlotte may have made the news, but many thousands of parents struggle unnoticed with an overwhelming burden of care — saving the taxpayer billions of pounds — and without any relief.
The only real drive to provide this relief comes not from the government but from charity, as so often, for all the might of the welfare state.
Yet, and this is a hugely important yet, more than a quarter (26%) of social services spending on disabled children — fully £140m out of a total of £540m — is spent on “assessment and commissioning tasks”; in plain English this is administration and red tape. It is heartbreaking.
I owe many of these figures to an important and eloquent pamphlet just published by the Centre for Policy Studies, called People, not Budgets; Valuing Disabled Children, by Florence Heath and Richard Smith. What emerges from this study is that, as usual in the state sector, the whole thing has become too complicated for anyone to understand, still less administer.
With complication comes muddle and waste, and with waste comes unnecessary hardship. Local authorities do not always keep records of children with severe disabilities, they may not understand their legal obligations to them and it may be unclear which of the many relevant agencies is responsible for which service.
In any case, there are always “budgetary restraints”.
And, most unfairly, it is the same authorities that both assess need and then pay for it — a glaring example of conflict of interest. You would be most unwise, in local government, to assess a person as having needs that you knew you could not possibly pay for.
This is all bad enough in itself. Worse still, it is a sort of template for what is wrong with the welfare state across the board — too much legislation, too many agencies, with the inevitable waste and confusion. And too much power and discretion over our lives in the hands of the state, which has commandeered the right to spend our own money for us on the things that are most important to us.
The state has become the confused, inefficient and overpowerful middleman. And the answer is elegantly simple. Cut out the middleman between ourselves and our closest needs. Give the parents whatever money the state can afford, in direct payments, to use as they see fit — and not only for the care of their disabled children but for ordinary healthcare and schools as well.
If the Conservatives need slogans, there are some glaringly obvious ones — power to the people, power to the parents, and cut out the state middleman.
The Sunday Times | Sunday, October 10, 2004 | Comments (0)
Keeping 'miracle' babies alive is a disaster for all
Seven or eight years ago I found myself in a small, homely ward in a hospital for people with learning disabilities in Holland. The air was full of the noise of pain.
The middle-aged patients in this ward were severely disabled: they could not see or talk or sit up or move much, but they were lying on beds or in special chairs. They all appeared to be in great distress.
Most of them were crying out intermittently and sometimes writhing, as if in pain; one or two were restrained with special tapes and straps to stop them harming themselves. Although they were all being tenderly cared for by wonderful nurses, with plenty of personal attention and attempts to comfort and stimulate them, they were absolutely wretched.
The person showing me around the hospital told me that they had almost all been badly damaged at birth — victims of the poor obstetrics of the past.
I commented that good modern obstetrics presumably means there will now be many fewer young patients with such terrible disabilities. My guide shook her head. The numbers are more than made up these days, she told me, by extremely premature babies from neonatal intensive care, who survive — but only at a high cost. In other words, not despite but because of its dazzling progress, modern medicine is still producing damaged babies.
I was shocked but not exactly surprised. Because I have always had a personal interest in disability and the pain it causes to all concerned, I have always felt instinctively wary of the high-tech neonatal intensive care units.
I believe that it is probably a mistake to work so hard to keep premature babies alive, when they try so hard to die and when the likelihood is so high that they will be damaged if they survive, perhaps seriously.
These high-tech wards have always looked too much like laboratories, where nurses and doctors are in effect — whatever their motives — doing painful human experiments to make medical discoveries.
The sad case of Charlotte Wyatt in the High Court last week took me straight back to that ward in Holland. It cannot be right to strive to keep alive babies who will be condemned to a life of such wretchedness.
Charlotte is, it seems, such a baby.
She was born three months prematurely, five inches long and weighing only a pound. Now 11 months old, she is deaf, blind and unresponsive and has no feelings other than continuing pain, according to her doctors. She regularly shows signs of distress. She is sedated and fed through a tube 21 hours a day and needs constant oxygen.
Charlotte has stopped breathing three times and has severe and permanent problems with her brain, heart, lungs and kidneys. Intermittently she is stabbed with needles. She will never be able to leave hospital. For as long as she lives she will be severely disabled.
Charlotte’s doctors do not wish to resuscitate her, should she stop breathing again. Her parents, who are Christians, wish them to do everything possible to keep her alive.
Her doctors therefore went to the High Court last week, seeking permission not to put Charlotte on a ventilator the next time she develops breathing difficulties.
Her parents went there to challenge them. This looks like a classic painful dilemma and it has certainly hit the headlines. However, for once I do not think that it should be so difficult for the court to decide what is right. It is the wider implications that are difficult.
Under current law, parents have the power to decide what medical treatment their child receives. But they cannot insist on treatment that doctors think is inappropriate or causes more suffering than good to the child.
In this case the doctors’ arguments appear to be overwhelming and some of the parents’ arguments appear weak: they have reportedly said that “the hospital are trying to get us to pull the plug” and this would mean “killing our daughter”. That is incorrect.
The paediatrician has said: “I have no wish to stop treating Charlotte. The only thing I feel strongly about is that it’s not in her best interests to escalate her treatment to such that she requires ventilation.” That is far from pulling the plug or killing.
This case seems to be as close as it ever gets to black and white.
What remains a grey area, however, is the question of neonatal care and the constant resuscitation of premature or damaged babies. I wonder whether many people’s attitudes might change if they were aware of the risks.
I also wonder whether so many parents would long so desperately for their babies to be kept alive at all costs if they knew what the personal costs really were. In my experience, this has so far been unthinkable and unmentionable. And I wonder how it happened that this poor baby was, despite her terrible disabilities, medically forced to survive to 11 months.
Why was it ever considered in her best interests to do everything possible to keep her alive? I find it truly shocking. Before all this neonatal high-tech existed, such babies would have died at birth. And for most of human history, God has apparently put up with that.
I am not suggesting that nature knows best. Mother Nature can be extremely cruel. But there are times when medicine, which is supposed to relieve suffering, can be even more cruel. There are fates worse than death.
Two weeks ago, by coincidence, Panorama broadcast a sobering programme about extremely premature babies. It discussed the biggest study ever conducted worldwide, which followed babies born in Britain in 1995 at less than 26 weeks’ gestation — three months prematurely, like Charlotte.
I could not help crying when I saw the tape. The rate of disability is horrifying. Of the 811 babies given intensive neonatal care in the study, only 300 went home; of those, only three children were without any disability at all. One per cent.
A quarter of the children have severe disabilities, such as cerebral palsy, blindness, deafness or grave developmental problems. Eighty per cent now have some physical or mental disability, or both, and 40% have moderate to severe learning disabilities (formerly called mental handicaps) as against 1% in the general population (a “moderate learning disability” is a euphemistic term for a serious lifelong handicap).
The suffering of some of their families is indescribable, to say nothing of the astonishing cost of the care.
This programme confirmed all my worst suspicions about what was done to these “miracle” babies. It is experimentation; a doctor in the film admitted that in 1995 they really did not have a clue about disability rates at all. Yet they proceeded with these horrifying, intrusive, painful treatments with their unknown but terrible outcomes. It was only recently that they agreed that these babies feel pain.
As one of the doctors now says, those babies who have survived with severe disabilities represent a medical, social and economic disaster. It is also, and more importantly, a personal and family disaster.
In Holland doctors no longer treat such extremely premature babies. British doctors should follow their example.
The Sunday Times | Sunday, October 03, 2004 | Comments (2)
