A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

Are you saying Natalie that women should choose to terminate a pregnancy in the case of known disability in order that funds can be directed to other disabled or ill individuals?

You can have children without down syndrome who are sneaky rude limit pushing etc... you won't rule out lds or bad behaviour through nipt.

Not downs doesn't mean guarantee of "normality'". Nor will it "screen out" other issues which impact on families.
You can do all current tests and have a child with a different condition.
Society does need to accept and support families with a family member with a ld . (Or severe mh or etcetc)
Her insinuation that people should never terminate for ds sits badly..termination is a choice. Always.
but there is a question about whether we can tolerate and accept learning disabilities in general. And support families.

I'm sorry if that is upsetting on a personal level, Karlos - and I certainly don't mean to cause any offence, but it is an issue at the heart of the healthcare system. Take it away from the issue of Downs - look at NICE. This exists to ensure efficient allocation of resources. It is why some cancer drugs are deemed "cost effective" and allowed to be prescribed on the NHS and others aren't. It's why some experimental operations are allowed and others aren't etc etc.

Because I would view a child I had given birth to, fed, bathed, watched sleeping, stroked their hand, comforted when they cried, as different to a foetus at 10-14 weeks gestation? If something happens to a child who is here you have no choice in the matter, you either sink or swim. That is not the case with conditions where we have access to prenatal testing.

...we are dodging the question of what screening and termination are doing to our attitudes to people with disabilities in a way which is quite disgraceful and cowardly

How so?

And I don't understand people who say they couldn't cope with a disabled child as though that's a complete answer. If you're a parent you could be placed in that position tomorrow. Would you walk away from your child because you couldn't cope?

There's a big difference in choosing to put yourself in a position & coping if it happens.

So let's make sure no disabled people are born to save the public money.
1930s Germany anyone? Disgusting. If this is what choice turns people into, perhaps we are better off without it.

How many parents of a child with Down's syndrome would have actively chosen a baby with DS if, hypothetically, they had the choice between having that extra chromosome or not before even becoming pregnant? I'd hazard a guess the answer would be very close to zero.

But being pregnant changes how people feel, there is a life. Many parents will still decide to continue even with a positive DS diagnosis early on in pregnancy. Termination is simply not a consideration for some. For others who have tried for so long to concieve it may be a case of choosing between a child with DS or potentially no child at all. There will always be people with Down's syndrome because (I hope!) there will always be choice.

Inevitably though, better screening will lead to fewer people with DS as most people do chose to terminate. They choose not to take that path. And that is ok.

The focus should be to ensure that children with Down's syndrome are supported by society and not isolated.

Are you saying Natalie that women should choose to terminate a pregnancy in the case of known disability in order that funds can be directed to other disabled or ill individuals?

Of course not, Fallen Madonna. Absolutely not. That is a decision that each woman should make for herself, without pressure from medics - and we are lucky to live in a society which provides help and care for disabled children. But testing and screening - for all things - on a macro/ NHS level is presumably always done to save money for the system. Take it away from Downs. Cervical screening is offered because it is cost effective to roll this out nationwide versus the cost of treating patients with full blown cancer.

Well said Northern Lurker.

I live in Ireland where unfortunately there is no abortion. However what is happening around the abortion of foetuses with DS in the UK is probably the biggest pro-life platform in Ireland. The high prevalence of the condition here (because there is no abortion) means people interact with it all the time and it horrifies many people here how easily people want to eradicate it in other countries. It is eugenics and acknowledged eugenics and even that is an uncomfortable truth for many who proclaim otherwise. I don't seek to control other women and I think abortion is a force for good but personally I think aborting a foetus because it has disabilities does raise ethical issues.

You can have children without down syndrome who are sneaky rude limit pushing etc... you won't rule out lds or bad behaviour through nipt

No shit Sherlock. Any particular reason you extracted a tiny part of my comment & twisted it?

I didn't say she behaved like that because she has DS, I said not all babies/children/adults who have DS are 'happy, loving, biddable' as that 'documentary' portrayed them to be.

The point is you can have as many tests as you like, it doesn't mean you will avoid the position because there is so much that can happen. Fundamentally if you don't want the risk of having to care for a child for the rest of your life then don't have the child at all. That's the only way to be sure. Any assurance testing gives is purely an illusion. One which says some pretty difficult things about disability and how we value the disabled population.
I don't oppose testing. I just think we should be honest with ourselves about why we do it and what it means.

If you can't cope with a disabled child, genuinely, you shouldn't have a child st all. Because you have no control over whether you are placed in that position or not.
What people actually mean when they advance inability to cope as a reason to terminate is that they choose, insofar as they have choice, not to have to. That's absolutely no ones business but your own, but I would have more respect for the position if it were stated honestly.

Crush posted northern lurker - you said it so much more succinctly than I did

I thought it was very thought provoking, yes of course Sally Phillips is clearly biased but so is the have a test and if there's a high chance of problems terminate. The figures in Iceland are chilling 100% termination rate, that's strikes of going back to a certain German man and that is not good.

The helpline woman seemed terrible in my opinion very wishy washy. If I'd have rung her she would have swayed me to have a termination.

What's needed is proper advice from both sides but ultimately yes it is the mothers choice.

Fwiw I refused all tests as I knew in my hearts of hearts once I felt the baby move there is no way I could've terminated. Once I felt the first movement it was my baby and no longer a foetus. Everyone tried to sway me but I was adamant, I was 30 so not overly high risk but not exactly a spring chicken either.

Is this a slippery slope to sex selection? Is that a bad thing?

it horrifies many people here how easily people want to eradicate it in other countries. It is eugenics and acknowledged eugenics and even that is an uncomfortable truth for many who proclaim otherwise.

I must have missed the part in the thread where someone, anyone, said they wished to eradicate Downs. What people are saying is I wouldn't (or couldn't) make that choice for my family. The cumulation of many people making that choice is that we see less individuals with Downs in our communities than in countries where abortion is illegal, but to say that this is the aim of the women and couples making this very difficult and personal decision is disingenuous.

Steve. If I had a termination because the foetus had a disability, it would be because the risk of me dying first & leaving my adult child vulnerable to 'care in society' terrifies me. It's not about his I would cope, but what happens when either I cannot cope or I die.

The test is way before you can feel the foetus move.

This is about the rights of parental choice, not the rights of a foetus.

I thought one of the most telling moments was when SP sat waiting, in tears, to meet the young woman with Downs who did the TED talk (was it Karen?) making dramatic statements about feeling like "life and death is hanging in the air" and pondering whether her film would spare a baby with Downs from being terminated (and also whether the film would cause a woman to opt for abortion - not likely though eh?). Her personal crusade to "save" people with Downs was so obvious at that point. Interesting that her evangelical Christianity was not touched upon at all, because it was kind of obvious by then.

Watching it on iplayer.

It was interesting to hear the perspective of the mum who terminated as she didn't want to see her child struggle to get anywhere near normality. Life is hard when you don't have money for private health care, many of us will struggle in mid/old age, but add in a major disadvantage from start and I understand why so many choose to terminate.

It was heavily biased, but she didn't hide her bias so it's not completely unfair.

It's ridiculous to say I should not have children if I feel like this. It's about minimising the risk, not eradicating it.

I have complained about the bias and the non-disclosure of her Evangelical Christianity.

Those of you who are horrified by the idea of reducing the prevalence of DS as being an objective for some, do you also object to research to try and reduce and/or eradicate Alzheimers for example? Would anyone given the choice elect to have Alzheimers? I am guessing not. If so why is it considered morally superior to make that choice for a person who does not yet exist?

The cumulation of many people making that choice is that we see less individuals with Downs in our communities than in countries where abortion is illegal, but to say that this is the aim of the women and couples making this very difficult and personal decision is disingenuous

The culmination of 100% of foetuses diagnosed with ds in utereo being aborted in Iceland is the eradication of Downs whatever way individuals want to sanitise that Thecraic I think it is disingenuous to say otherwise so we will have to agree to disagree on that.

The media face of DS is one of happy, loving people with a surprising amount of independence. The reality of DS is rarely so straight forward. I think there is an increasing perception that we are screening for a condition that is just a bit inconvenient for families rather than one that, if we're honest about it, can be potentially devastating.

I'm not sanitising anything. You said, it horrifies many people here how easily people want to eradicate it in other countries. No-one's said that. I doubt many people in Iceland or wherever think, "I could cope this child with Downs, but I really want to eradicate the condition so I'll probably have this here termination".