http://www.patricia ebauer.com/ down-syndrome- genocide

The Evening Standard (London)

July 8, 2008 Tuesday

Caroline Armstrong-Jones, who organized last week’s Tory Summer Ball, talks powerfully about changing attitudes towards the handicapped, the arrogance of consultants and future hopes for her own 11-year-old daughter with Down syndrome

BYLINE: ALISON ROBERTS

SECTION: A; Pg. 22

ELEVEN-year- old India Armstrong-Jones is sitting at the kitchen table looking at photographs of herself as a younger child. Here she is on holiday in Mustique, and in Wales, sitting on her horse Charlie, who elicits a particular cry of delight.

And here she is wow! at Brooklyn Beckham’s birthday party, which her mother Caroline and father Peregrine, as upmarket events organizers, threw for Posh and Becks.

Most 11-year-olds would coo over this one, but it’s hard to know exactly what India, who has Down syndrome, remembers or recognizes. The Beckhams? India looks blank. Her mother laughs.

“She’s a very content person. I think a lot of ‘normal’ children are actually very discontent. They’re always wanting another game or another this or that, which is quite unattractive, really.

“The high they get from a new toy is over very quickly and you feel there’ll always be a kind of vacuum in their life. India’s not like that.”

Caroline and Peregrine, who is Lord Snowdon’s half-brother, helped to organise the Tory Summer Ball at the Roundhouse in Camden last week where Caroline took to the stage and spoke movingly about taking on the job “for India”, in the hope that a Cameron government “will champion the needs and improve the lives of those with disabilities of all kinds”.

India’s most obvious disability is her impaired speech but she is starting, very slowly, to read. Her condition is not immediately obvious: the facial characteristics of Down’s are not pronounced in her case and, anyway, she likes to hide behind her dark, shoulderlength hair.

“I quite often see people do a double-take, not be sure and then come back for another look,” says Caroline dryly.

The Armstrong-Joneses did not know India was a Down syndrome baby until she was born. Caroline had the normal scans but refused any other tests and even then it took several days before doctors gave a definite diagnosis.

Last month, however, it was announced that advances in prenatal testing may herald the routine screening for Down syndrome using a simple blood test instead of the current invasive womb exploration in every expectant mother.

Caroline, 45, is not a particularly emotional woman but my suggestion that this new method of screening is likely to result in most Down syndrome pregnancies in future being terminated provokes in her an unusually impassioned response.

“As a mother of a Down syndrome child, I know that they have a contribution to make and that they live entirely viable lives,” she says. “There is something horrific to me in the idea that they might all be weeded out or got rid of.

“I think, on a greater level, a part of me feels that, in 100 or 200 years’ time, what we’re doing now will be seen as a form of genocide, a terrible thing that we all thought was OK because it was legal and because the doctors and politicians said we could do it.

“There’s a feeling that perhaps it’s too expensive to have these very different people around, or perhaps even too frightening, and I think that’s a huge loss.

“Society is obsessed with perfection which, paradoxically, is a very flawed way of thinking. I know that I’m in the minority on this and I sometimes feel that I’m the madwoman and everyone else is sane. But for me there’s no grey area here; it’s a black and white issue.”

Caroline welcomes the developments in testing because “having information is always good and if there’s a heart problem, for example, sometimes that can be repaired before birth”.

And perhaps surprisingly, she does not judge the women who choose abortion.

But she does blame the medical profession for applying pressure to terminate.

She refused invasive prenatal Down syndrome testing on her second child, a perfectly healthy boy called Robert, who’s now eight, but she says she was made to feel positively irresponsible as a result.

“I think a lot of women are horribly pressured by doctors to abort Down’s babies. They’re told they won’t be able to afford it, that it’ll bust up their marriages. I have a friend who was put under intense pressure by [a very eminent London obstetrician] to let him terminate her Down’s syndrome pregnancy.

“In fact, she was fine with it: she was wealthy, Catholic and had two older children. She very firmly did not want an abortion.

“But this very clever man spent two hours trying to persuade her otherwise, and he took even her to the edge. The fact is, this man has diagnosed more than 350 Down’s pregnancies and only 11 of those children have been born. Well, that’s nothing to be proud of. As far as I’m concerned, he has blood on his hands.

“There will always be people who say we love India but we could never do what you’re doing ourselves. Which is fine, I’d never judge them on that.

“But my own gynecologist always says to me, you don’t know what happens 20 years later, when those women who’ve chosen abortion come into my room and are troubled by what they’ve done. They’ve tried to avoid the inconvenience and potential horror to a perfect life, but actually find it very hard to deal with later on. They see a child like India and it arouses all those feelings.

“I do feel that doctors should allow another voice into that decision-making process, when women are faced with such a choice.” In the days immediately following India’s diagnosis, perhaps inevitably, Caroline did feel “as though my life would never be the same again”. But that feeling quickly passed, she says.

“The fact is, we all have a little tragedy in our lives. People try so hard to avoid it but you can’t always. I’m not saying that I now see India as a tragedy. I don’t at all. But when she was first born, I had a lot of people saying: ‘We’re really, really sorry.’ “And, of course, it was a shock. But that response was tough and in the end I had to tell them, ‘Well, it’s fine to feel sorry, but I’m not, and you don’t have to be either.’”

It’s easier, of course, to deal with a handicapped child when you have money. Caroline and Peregrine’s company, Bentley’s Entertainments, organized the wedding of the Queen’s eldest grandchild Peter Phillips and Autumn Kelly at Windsor Castle in May and last week’s ball saw the Conservative Party raise £600,000.

They also deal with numerous footballers and their Wags including Chelsea’s John Terry and Spurs’ Robbie Keane and regularly cater to the demands of not only the Beckhams but also Sir Elton John and David Furnish.

Caroline is the first to admit that their wealth makes life easier. For the past eight years, for example, India has had a nanny who is also a special-needs teacher, a luxury that most parents could not afford. Her schooling, however, has been entirely state-funded. Until very recently, she went to a mainstream primary in Camberwell where, like most special-needs children, she was given additional one-to-one teaching.

The family have now moved to a flat in Chelsea in order to qualify to send India to their school of choice in the borough, which teaches children with a range of handicaps and disabilities. They have a second home on the north Wales coast, where India keeps her horse, and where, Caroline implies, people are often more accepting of her daughter’s difference.

“We have a tendency in the city to look at people like mobile bank accounts and to judge them by what car they’ve got or by the size of their house. In Wales, that’s not nearly such an issue.” India’s future is as hard to predict as that of any other 11-year-old. Her mother is a trustee of a charity called Elizabeth FitzRoy Support, which maintains and runs a number of houses for Down syndrome residents across the country; and it may be that India eventually lives in one of these.

“I’d be thrilled if she decided that’s where she wanted to be,” says Caroline.

“These centers are all about giving people dignity and independence, and it’s amazing what they can achieve given the right environment and support. They all have computers and mobile phones, and they’re all doing things their parents never dreamed they’d do.” But India will make up her own mind.

As I leave, she comes into the kitchen for a packet of crisps, and her mother rolls her eyes.

“The other day, I asked her brother whether it embarrassed him when India comes and plays with him and other children. And he said, ‘No, no, it never embarrasses me. It irritates me.’” It’s the classic response of a brother towards a sister, and has little to do with India’s disability.

“You know,” says Caroline, “for 90 per cent of the time, I’m not fully conscious that I have a child with any form of handicap. I just have two children. When you have children, you don’t expect mini-me’s, do you? They’re always a challenge. But it’s always a privilege to have them.”

DOWN SYNDROME: THE FACTS

The advent of a reliable maternal blood test for Down’s syndrome has been hailed as a significant breakthrough, particularly for the increasing numbers of women who opt to leave motherhood until their thirties or forties.

The present amniocentesis or chronic villus sampling, both of which involve inserting a needle into the womb, carry a 1-in-100 risk of miscarriage. More than 300 healthy pregnancies a year are lost in Britain because of these Down’s tests.

The new test, developed in Hong Kong, analyses genetic markers from foetal material circulating in the mother’s bloodstream. According to doctors, not only will it save healthy babies and relieve stress on pregnant women but it will also mean that fewer Down’s syndrome children are born.

Copyright 2007 Patricia E Bauer
Free Hit Counter