DOMINIC LAWSON: A chilling medical test that I fear will make humanity so much the poorer
Though just over a decade has passed, it seems only yesterday that Sally Phillips and her husband Andrew came with their tiny baby, Olly, to spend the weekend with us.
Olly was born with Down’s syndrome; our daughter Domenica, ten years older than Olly, also has the condition. Mutual friends had suggested to Sally that she get in touch, as she was struggling to come to terms with her situation.
How wonderful it is to see Sally and Olly now — as the whole country can on Wednesday, when BBC2 broadcasts an extraordinarily powerful documentary presented by the actress and screenwriter (better known for Miranda and the Bridget Jones movies). Now she has three boys, and the programme shows just how happy they are all larking about together, with Olly — alert, articulate and witty — at the centre of this vibrant family.
Domenica, pictured far left, works at a cafe in Brighton - part of Team Domenica, a charity started by Dominic Lawson's wife to get learning-disabled young adults into jobs (pictured at the launch event)
But her programme is also a dark one, as its title suggests. It is called ‘A World Without Down’s Syndrome?’
The reason is that the NHS is about to launch a new, more accurate scanning method for detecting if an unborn child has the extra 21st chromosome that defines Down’s syndrome.
This process, known as NIPT (non-invasive pre-natal testing), predicts with 99 per cent certainty whether or not that is the case. The current scanning method is much less accurate, and as the follow-up process of injecting a needle into the womb contains a measurable risk of miscarriage, many mothers-to-be refuse it.
Since NIPT has become available in the private health sector, it has led to an increase in terminations for Down’s of 30 per cent. Sally’s fear is that if it is made freely available to all, we might see the complete eradication of Down’s.
In effect, though through public choice, the British Health Service would do for Down’s people what the Nazis tried to do to the Jews: total elimination.
Actually, the mentally disabled had been the guinea-pigs for the mass extermination by gassing of the Jewish population. In 1939, German doctors launched the Aktion T-4 programme to kill roughly 200,000 disabled people, mostly children. It was openly argued that this was for their own good, as their lives were ‘not worthy of living’; and also for that of society as a whole, as the cost of their care was an unfair burden on the ‘healthy’ population.
I’m not accusing the promoters of NIPT of being Nazis, and certainly not the mothers-to-be who take the choice to terminate (no woman makes this decision lightly). But the fact remains that the arguments made for an ever-more intensive screening programme rest on a similar belief: that the lives of people with Down’s syndrome are ones of unmitigated suffering; and, from the point of view of the medical policy makers, that the cost of their care is a burden on an NHS already under huge financial pressure.
My daughter is now 21 and intelligent enough to understand this. When I told her about the controversy yesterday, she emailed me to say: ‘But they don’t know what I am capable of and they didn’t know that when I was born. We don’t deserve this hate. It is just wrong and you know it.’
Julie Walters helped officially launch the social enterprise charity project Team Domenica
Domenica works at a cafe in Brighton — part of Team Domenica, a charity started by my wife to get learning-disabled young adults into jobs. Of course, she will never be capable of many of the intellectual skills which, for example, her elder sister accomplishes effortlessly. But she was a fluent reader at the age of five, and today, when we are struggling to get a TV or a computer to work, it is Domenica who grabs the controls and says: ‘Let me do it’.
Yet when she was born, we were given the bleakest imaginable prognosis by the medical profession. Just grim expressions and a long list of apparently inevitable complications.
This was Sally Phillips’ experience more than a decade later, as she recounts in her documentary: ‘The doctor said to us: “I’m sorry, I’m so sorry.” The nurse on duty cried. I don’t think anyone said anything at all positive. It wouldn’t have been any different if they’d told me my child wasn’t going to make it.’ No wonder she was so shattered when she came with Olly to see us.
And still today, in 2016, all pregnant women are told about Down’s is, essentially, what such children’s afflictions might be: for example, a lower-than-normal life expectancy and a greater-than-average chance of getting leukaemia.
But imagine if mothers-to-be were given a full list of what might afflict any new-born in the course of his or her existence, from cancer to mental illness (which affects an ever-increasing number of young adults, especially females). It would hardly encourage them to carry on with the pregnancy.
Bridget Jones' actress Sally Phillips with her son Olly (pictured together above) feature in a new, extraordinarily powerful BBC2 documentary 'A World Without Down's Syndrome?'
Yet the people behind this new screening programme don’t seem at all pleased that Sally Phillips has painted a positive picture of having a family which includes a child with Down’s syndrome.
Jane Fisher, director of the charity Antenatal Results and Choices, declared that Sally’s film was ‘not at all helpful’ to people deciding what they should do when faced with the diagnosis that their child-to-be had the ‘extra’ Down’s chromosome.
Fisher said that Sally’s advocacy ‘risks offering the suggestion to those who have decided to end a pregnancy that they have made the wrong decision’. Perhaps what really bothers her is that it might reveal that the advice her organisation gives to worried mothers-to-be has been leading them to a decision which might leave them with a lifetime of remorse.
Sally Phillips (pictured) has spoken out about how pregnant women are being pressured to abort babies with Down's syndrome
In the end, what do we want from a life? If it is material possessions, then, yes, a person with Down’s will never be a plus on the family’s profit and loss account.
But if we feel this is a valid reason for termination, then we are no different from parts of the subcontinent where unborn females are aborted in their droves simply because the dowry system means a young woman has a high financial cost, and a young man is an asset.
If what we want from family life is emotional pleasure and even joy, then terminating Down’s children is, at best, ill-informed. These are life-enhancing people, not purveyors of depression.
In the most gripping part of Sally’s film, she travels to Iceland, a country where in the past five years, 100 per cent of Down’s pregnancies have been terminated — the bleak inspiration for her film’s title.
She speaks to a 30-year-old Icelander with Down’s, Halldora Jonsson (who is fluent in English): Halldora recently struck a chord in her country when she wrote an article about her feelings as some sort of tribe which might soon become extinct.
As Phillips put it, barely able to contain her anger and tears: ‘Perhaps Down’s is going to end up like the dodo: made extinct because it was too trusting and not violent enough.’
If that comes to pass, humanity will be so much the poorer. Something special will have been lost.
Moneybags Mansfield is the wrong man
Michael Mansfield QC
As the two lawyers at the heart of the Independent Inquiry into Child Sexual Abuse quit, hard on the heels of the third of its chairwomen to walk out, someone has modestly come forward to offer his services.
On the BBC Today programme, 74-year-old Michael Mansfield QC (pictured) declared himself available to clear up the morass of disrepute into which this misguided monster of an inquiry has sunk.
This is the Michael Mansfield who last year was arrested over claims of domestic assault (though released without charge). This is the Michael Mansfield who lent his (highly expensive) services to the Egyptian billionaire Mohamed Fayed’s deranged attempt to prove that the Duke of Edinburgh was behind the death of Diana, Princess of Wales.
This is the Michael Mansfield who three years ago had to close down his chambers, as it was 95 per cent funded by the now greatly trimmed legal aid budget.
There can be few lawyers who have for so long been so adept at living high off the public purse: in 1998, he was one of a group of senior barristers whose bills, in cases funded by legal aid, were examined by Lord Browne-Wilkinson, a senior law lord, who said: ‘Quite astonishing fees were claimed . . . it is pretty shattering, in my view.’
Given that the costs of the out-of-control inquiry are already arousing public concern, Mansfield is hardly the man to re-instil confidence. As for his claim that ‘it can be rescued with careful control and management’ — well, maybe. But the words Michael Mansfield and careful do not even belong in the same sentence.
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