A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

Of course, liney. Hence my use of the term "generalisations". I'm sure that for every carer that has buckled, there is another whose life has been enriched immeasurably by their adult child with ds.

Puny, I think you misunderstood what I meant. I'm not saying people aren't free to criticise and disagree with SP because she might read it. Not at all. Everyone has a right to express their opinions. I was just pointing out that if she is reading, then she's bound to be disappointed by the reaction. An obvious point to make perhaps, but still, I certainly wasn't saying people shouldn't feel free to openly disagree. However, I think "cowbag" was a bit much

If people want to share their experiences and argue against termination that is fine, though I agree that a biased presentation of a condition should not be on the bbc. I wish they would not link that to trying to limit or ban accurate non invasive testing. Don't deny people information. Instead present them with your ideas of how they could respond to the information. Getting your desired outcome indirectly by keeping people in ignorance is no kind of way forward. If you imagine analogies with other medical tests or personal information that prompt various responses, it is ridiculous.

Judging from this discussion, there is no need for arguments in favour of testing to be aired. As poster after poster has shown, people are very familiar with the case for testing. They are well able to articulate it Anne it is clearly the majority view. In that case, to ensure a balanced argument it is the case against that needs to be heard.

But Philips's programme was clearly a personal view - and she was reluctant to make the programme herself because she's not a documentary maker. It's just that she couldn't get someone else to do it. Perhaps the case for testing should have been part of the programme.

In any case I do think it is significant that all the posters on this thread who themselves have children with a disability (at least those who have declared themselves as such) have in general liked the programme.

I know that caring for a child or adult with a disability can be a burden that feels and is intolerable. But surely that is an i argument for better care for the disabled and their carers by the whole of society. If we really valued caring we would support carers better. But do the difficulties of caring for someone mean their life has no value - either to themselves or to you? The size of your vocabulary or your continence or mobility or behaviour doesn't determine your worth as a human being.

Encouraging the attitude that the birth of a baby with a disability is an avoidable tragedy suggests very strongly that their life is without value. And that, surely, is completely, profoundly wrong?

Of course my child's life has value. I'm pro-choice. Don't be so massively insulting.

I'm pro-choice too (although I think there are limits to choice). And I didn't mean to be insulting to you or any other poster.

I said that the way DS is presented as an avoidable tragedy suggests that the lives of people with DS are not valued. I didn't say that any parent with a disabled child does not value their child's life - quite the opposite in fact.

niminy - I have a child with a neurological disability, as well as (as I stated earlier) cystic fibrosis in my immediate family.

I don't have a problem with SP campaigning for better information about likely outcomes for people with DS. Or indeed campaigning for greater tolerance and funding for disabilities - god knows, I spend every day fighting one battle or another for my DS.

But - and it's a really big but - arguing against the validity of a test that gives women more information about their unborn child is wrong and misguided. This test will prevent thousands of women miscarrying their babies - whether they have downs/turners/edwards/patau or not.

Incidentally, I was high risk for ds because of my age. I chose to have no testing - not even a nuchal fold test. But that was my choice. And that's ultimately what Phillips wants to stop - women having a free choice.

Good grief!! Why do people keep relating this to existing children / adults with disabilities? People with disability are just people. A commonality of genetic condition doesn't define them surely? We don't define people by their disability, do we? I don't understand "Don't screen us out" - who is 'us'? How insulting to be grouped by your disability? Surely that is a minuscule factor to have in common. No one is saying these individual people should have been aborted! There is no retrospective action planned fgs. We are talking about every woman having a choice about whether they wish to keep or abort a foetus without some ridiculous moral judgment as to whether their reason is good enough. 1000 of foetus every year don't make it through to a live birth for a multitude of reasons but we need to have a special way of thinking about those that don't because they were aborted due to high risk of DS? I really struggle to understand this argument.

she doesn't want to stop people having a choice at all, she just wanted to show people that having a child with ds is not the life sentence that people would think it would be.

i found the programme to be really hard to take. people with ds can work just like everyone else, they should have the same opportunities as everyone else.

it's a grim world we live in now where everyone is expected to be able to give something yet in reality we have a large amount of self entitled people who expect to be subsidised for their entire lives for doing nothing and giving nothing.

Government doesn't help with cutting employment services such as remploy, it just doesn't make any sense that we cannot support the most vulnerable in society that want to work yet we have so many that just expect to be kept and housed and fed benefits for no reason.

Of course it's not a life sentence for HER because she has sufficient wealth and resources to minimise the impact!

I watched a programme last night about the ambulance service and one woman calling 999 51 times in one night. now if we could screen that sort of person out how much money could we save

I will need to make a point of watching the program, the debate on here has been very interesting and eye opening. It's one of those questions where there is no right or wrong answer. It all comes down to a women's choice. If the tests came back saying my ds would have Down syndrome I honestly don't know whether I would have terminated or not, I wouldn't wish that choice on my worst enemy. However, if I ever had a dc2 who was going to have ds, then I would terminate. i don't think that it's fair on my ds that he would have to care for the dc2 when I am too old or dead.

Of course it's not a life sentence for HER because she has sufficient wealth and resources to minimise the impact!

I don't understand how this doesn't mean that it isn't a 'life sentence'. Of course she is lucky - and she admits that. It makes many things easier. But that does not mean that she will not care for her child for the whole of her life.

vodka

Indeed but as with most things, having financial security makes an enormous difference and thus her situation is not really parallel with that of many.

I don't think she is that rich (no offence if she's reading this) but that is a lame argument. having money doesn't mean you can buy good care for the rest of your child's life does it and the majority of downs people can live normal lives, if only to have people who understand how they are.

She's rich enough to have a live-in nanny on hand constantly.

Oh well let's disregard everything she has to say then
Honest to god people can really be do horrible

I thought the Icelandic geneticist, she interviewed, made a very pertinent point. That is, what we really ought to be questioning is our society's perception of disability - testing just giving us additional information. We then have to accept responsibility, as to what to do with that information, and it is perceptions of disability that can hugely affect this decision making process. It seemed to me that Sally did not disagree with this point.

What I find really abhorrent in all this are the very different rules regarding late abortion (to term if I recall correctly) of Down's children. But maybe there is something I am missing as to the reasoning behind this rule?

I don't think a single person on here has said that women should be denied nipt or how important it is for women to have choice. So I'm not really sure what we are arguing about?!

I would have nipt and would probably terminate a pregnancy with DS.

Still, this thread is bringing out some pretty shocking views about the relative value/burden of the disabled, and I'm pretty fucking shocked. I wonder how many of you would be happy to have this discussion face to face.

Btw I am watching my poor friends with children who have DS trying to justify their children's existence on fb in the wake of the media backlash against sally phillip's documentary and it's very very sad.

Horrible, for them to feel they have to do that, cedric. I think these debates quickly become far too polarised.

It is profoundly depressing, Cedric. You are quite right.
Having a child with a disability is a problem in lots of ways but I think it's saved me from turning into some of the people posting on here. Some truly horrible thoughts and posts.

I missed the programme. Did it address what seems to be a lot of people's main reason for terminating a foetus with a very high likelihood of DS?- ie who will look after them when you die. The average life expectancy for a person with DS is about 60. So if my child had DS I would likely be in my late 90s when they were in their last years of life (unless they were severely affected with physical problems and died young) and DH over 100. I understand that there is an increased risk of dementia with DS and I have a close relative with dementia, seeing the care involved I don't think I could cope with caring for a stronger younger person with dementia in my 90s...assuming I would even be alive. I know that sending your child to a nursing home isn't the end of the world but neither that nor a lifetime of at home caring for someone who will never live independently is not something that I would actively choose. I would do it to the best of my ability if I had to due to lifechanging illness or injury to my child, or if there was no testing available, but I would not actively choose to continue a pregnancy with chromosomal abnormality.
I had NIPT privately and would very likely have had a termination if it showed a very very high risk of DS, and almost definitely would have so in the case of Edward's or Patau's syndromes (which I had never heard of).
Luckily I never had to make that choice.
I hope to have one more child; if I am lucky enough to get pregnant again I will have NIPT again with the added factor of my existing child. If I am faced with a test result that shows a high chance of DS this time I will be very aware that I would be not so much deciding about caring for a child with DS, but deciding on behalf of my infant child whether they will care for an adult with DS when they are grown up.

I thought it was bloody brilliant.
I thought she was bloody brilliant.
Some of you are downright nasty