'In 100 years, we will look back and see the abortion of Down's babies as genocide'

[Guest guest]

http://www.patriciaebauer.com/down-syndrome-genocide

The Evening Standard (London)

July 8, 2008 Tuesday

Caroline Armstrong-, 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- 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-es 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 , 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 and

Autumn 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 Terry and Spurs’ Robbie Keane and regularly cater to

the demands of not only the Beckhams but also Sir Elton and 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 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.

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