A world without downs

[doversoul1]

...that Sally Phillips was saying that the description of Down's Syndrome that was given in the information was purely medical and for her bore little or no relation to the person that she knows and loves. This for her was the misinformation that women were being given.

What did/does Sally Philips expect medical professionals to tell the patients beyond the medical facts? Does she seriously expect doctors to tell the women that their children would be fantastic individuals and they would be proud of them? Surely there is enough information about Down’s syndrome if anyone needs to find out? The decision should be left to the women/parents.

She felt that she would be bullied into accepting that she was making a mistake by bringing a Down's child into the world if the test proved positive.

You could say that Phillips is bullying some women into accepting that they are making a mistake by not bringing a Down's child into the world if the test proved positive

... Phillips was suggesting that many of us are uninformed about where this road is leading and that it's not just about Down's Syndrome, and it's not just expectant Mothers.

I find this suggestion patronising in the extreme.

Sorry, johncorrigan. I’m not getting at you but I feel there is something very wrong about the idea on which this programme was made.

This is from today’s Guardian

https://www.theguardian.com/commentisfree/2016/oct/07/brother-downs-syndrome-eradicate

I understand the desire to eradicate Down’s syndrome, but it’s sad to imagine life without these precious children and adults who bring such light into their families’ lives

Here we go again. They are a great gift to us. I wonder, if medical technology were available, how many of us would like to become the gift?

[Richard Barrett]

why is it Down's that is chosen for this treatment? Is it just because we can test for it

Down's syndrome is the most widely known cause (and the most common genetic cause) of intellectual disability, having been part of the medical literature since the mid 19th century, it has a relatively high rate of occurrence (1 in 1000 births or so), and affected individuals are usually quite recognisable and with well-defined care and health needs. I think this is probably why it's given such attention as opposed to other, rarer chromosomal abnormalities (which of course also show up in the same tests).

[Lat-Literal]

The media coverage on both sides is awry. You can't eradicate something of this nature unless there is a programme of compulsory termination. The reason why there is so much screening in Iceland is almost certainly because the genetic connections in its small population are such that people inadvertently marry family members. That carries an additional genetic risk but not as much as is often implied. Different places take different views on the matter including in the US where cousins marrying is prohibited in some states but not others. That may historically be due more to religion than anything scientific. But there is a point about what is said or not said at the cutting edge. That too may not be entirely of a medical nature even if it is genuinely presented with that idea in mind. For example, possibly one of the biggest challenges for people needing to consider what to do is money. I feel that in many areas the medical profession is caught between wanting to provide a service with if necessary the provision of hard facts and Government led stances because it doesn't want tax payers to foot the bill for expensive treatments. There is in society a price attached to progressive values towards disability that is less than charitable. That is, everyone is wonderful as long as they are self-sufficient - see here the promotion of the Paralympics and also older people having the so-called right to work until the age of 95.

[jean]

From a letter in next week's Radio Times:

...Speaking as a worn-out and worried carer of a 38-year-old son who has Down syndrome, the reality is very different for many, many people from the positive image portrayed...

Not least because there is such a range of disability with this condition. The delightful, intelligent, independent children we see are not the whole story.

[MrGongGong]

I haven't watched the TV programme
BUT from what I have read about it (in several places) it would seem that there are a whole load of different "arguments" being mixed up.

Medical VS Social Models of Disability
Perceptions of "Normality"
Womens reproductive rights
and so on

What I do know is that if one is only given information from a "medical model" perspective (which is what doctors rightly know loads about) then one is often in a position where an "informed choice" is almost impossible.
People who understand medical statistics are few and far between outside specialist areas.

People with disabilities DO need protection from those who would seek to "normalise" society.
Our society does struggle with views of disabled people who seem to oscillate in public perceptions between heroes (Professors of Theoretical Physics or Olympic Athletes) and those who are so disabled that we should help them to die.

[johncorrigan]

Not least because there is such a range of disability with this condition. The delightful, intelligent, independent children we see are not the whole story.

I don't disagree with this, jean, but as Mr GG has said this is a very complicated area.

My friend John was 62 years-old when he died about 5 years ago. He was in his late forties when I first met him, even at that time older than he would have been expected to live. John was a good reader, loved horror movies, had an encyclopaedic knowledge of 60's pop music and was a keen fan of Dunfermline Athletic. He lived in supported accommodation but was otherwise a pretty independent guy with a supportive family. Sometimes we'd skip class and go for a game of pool and a pint instead, and take in a European game. He had a wicked sense of humour; but I suppose that as well as liking this guy a lot, he taught me so much about people who live with disability, about not putting people into pigeonholes, about seeing their skills, about challenging my stereotypes. And through him I got to know other adults with various disabilities.

I remember he used to get fed up with himself that he couldn't handle money as well as he thought he should have been able to. In the end, predictably, he succumbed to dementia and it was as sad to see him struck down by this disease as others I have witnessed.

Sally Phillips has had a hard time since this film was aired. I think she was presenting a point of view of how she has experienced living with Down's Syndrome. Of course that is not everyone's experience, as you have quoted, jean. But some of what Ms Phillips was expressing was that the profile of Down's be raised up and I understand that perhaps she was not totally diplomatic about it. But it's an experience...I think she is trying to say, 'Look what we might be missing.'

This film has occupied my mind a lot since I saw it and it came to mind again at the weekend. I met a guy I was on the School's Parent Council with. His son, though two years younger than my daughter used to do physics and maths in her class. My daughter and her pals got on well with him, maybe because they had a means to communicate with him although he had great difficulty in social situations.

His Dad had told me early this year that his son had been accepted to do theoretical maths at Cambridge and when I met him at the weekend he had just finished his first week and had even managed to phone home. 'Not bad for a boy who spent most of Primary School in the support base.' His dad told me that he only started to read at 9, but by 10 read his first book, Hawkings' 'Brief History of Time'.

Aspergers has had interesting press. We have become fascinated by the savant. Films about Alan Turing, 'The Curious Incident of the Dog in the Night' among other things have led to a fascination with these conditions. But I have also encountered families who go through extremely difficult situations on a day-to-day basis. I am sure there will be a time in the near future when a predisposition to such a condition will be pre-natally diagnosable (perhaps it's here now). Do we risk losing the likes of these fascinating people in the search for perfection? Or are they more valuable than people with Down's?

I don't know the answer to all this, but this very interesting film has had me questioning whether society does.

[Padraig]

I don't know the answer to all this

Nor me John, but I salute your persistence and the value you rightly place on your personal experience. That counts too.

[ardcarp]

Our friends' first grandchild is a lovely little girl with Downs. Very much loved as any child would be. The parents chose not to be tested on their second pregnancy as neither wished to choose an abortion were it positive...and this not from any religious conviction. One possibly overlooked aspect is that trisomy of chromosme 21 (the cause of Downs) can be as a result of a 'mistake' in the generic material of either the father or the mother. Shame or even blame are IMV wholly inappropriate, but surely decisions and responsibilities are put on an equal footing by that medical fact.
(I probably didn't express that very well.)