A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

'They don't have the right to an opinion'

Did you really mean to say that people with Downs Syndrome. Who are 'low functioning' don't have the right to an opinion about this?

That's really shocking.

I hate the term low-functioning. It effectively classifies people into a form of sub- human.

It is true that the families of disabled people become caters. However, all the people with disabled children that I'm in touch with have welcomed the programme.

Yes, it IS hard to hear someone essentially saying 'I wouldn't want a child like yours' (though I suspect a significant minority of parents with children with additional needs hear it /hear it implied a fair bit), but does that mean that women should be deprived of available, risk-free prenatal diagnostic information? Is that what SP is actually advocating, that women should have to weigh up the risk of miscarriage in an amnio against a diagnosis, even though there's a risk-free way?

Why did none of her interviewees ask her what she actually advocated? No prenatal testing? Abortion to be illegal?

An elderly friend's son is middle aged but functions at an estimated 18 month old level and has no speech and little understanding. Mother kept him at home until he was too large, heavy for her to manage and he in now in care. Strong evidence he has been sexually abused in care but he is unable to communicate his needs or concerns.

I thought it was interesting that 100% of foetuses are aborted in Iceland that are tested to have ds.

I thought it was interesting that in the U.S. you can already have the entire genome of your foetus tested with presumably risks of conditions/ developing diseases identified early on in a pregnancy.

Many of us will have conditions or diseases that will cost society in money or help in some form, is our value only in how little we impact on others?

Forgive me for the use of "low functioning" without the use of inverted commas. My mistake. If you read my post again you'll see I put "high functioning" in inverted commas. I realise that they're sloppy phrases but it's hard to find a better term.

Did you really mean to say that people with Downs Syndrome. Who are 'low functioning' don't have the right to an opinion about this

No, I said people with Downs should not be consulted when it comes to prenatal testing. The judgement call is not theirs to make. It's not Sally's either. They do not deserve to call the shots here, and decide what is allowed and what isn't.

Why would people with down's syndrome have any right to any opinion on what goes on with a woman's pregnancy? The same way that a random person on the street does not have any right to an opinion.

Also if you found the documentary as horribly biased as I did please complain on the BBC website, only takes a few minutes.

I don't think she said at any point that there shouldn't be a test - more that all lives matter and that disabled people have a right to exist. Of course many, perhaps most, people believe that a fetus is not a life until it is born and does not have rights separate to those of the pregnant woman. Except, other than in case of serious disability, it does, as third trimester pregnancies can only be aborted for serious disability. I thought Sally's point that down syndrome is a type of person, not a disease, was very pertinent to this.

I read an interview and she set out her stall in that saying that she wants healthcare professionals to not automatically assume "positive for Downs = termination", and to give a more rounded prognosis rather being all doom n gloom. Ironic then, that she's produced an overwhelmingly biased program which paints people with Downs as perfectly healthy and healthy with some cognitive issues hardly balanced is it?

The thing is - if you want to be a parent you need to accept that not every child will grow up to live an independent life. For many reasons, congenital or acquired disability, addiction issues, mental health, long term chronic ill health, there are many reasons why your kids may not fly the nest. Sometimes there is no growing old watching grandchildren excel. Sometimes what we get is grief and anxiety and stress. None of us know what will come our way.

The problem I have with antenatal testing is that it implies there are some problems you can screen out. We all know that's what it's about. It should be about information but it isn't. It's about termination. So yes I would think Sally Phillips does take it pretty personally. The least we can do is acknowledge that reality.

If you want the test I'll support you having it. If you want to abort I'll support you doing that and you don't have to give a good reason, you don't have to give a reason at all. That's what being pro choice means. It's not for me to designate one reason better than another. But don't try and convince me that testing and abortion don't go hand in glove. And don't try and pretend that we aren't screening out Down's Syndrome in our population.

Also if you found the documentary as horribly biased as I did please complain on the BBC website, only takes a few minutes.

How do I do that Gruffalo? Thanks.

Why is it wrong to screen it out if that has been each individual woman's choice?

niminy

That's 'an' ethical debate, it's not the ethical debate.

As for this 'documentary' - it's crap.

She wants to deny others the choice she had, based on HER DS & based on HER lifestyle.

Try having fuck all money & a daughter who is not the oft portrayed 'sweet, loving, biddable child with DS', but a sneaky, rude, limit pushing, danger seeking, cruel & bloody hard work child with DS that my friend has.

There are so many issues here it's hard to know where to start really, but one of the big issues for me is the fact that it's the PARENTS that are the ones who will have the 24/7/365 responsibility for this baby who will still need care as an adult & the worry of what will happen when they are no longer here. If society wants to rob parents of that choice, then it needs to step up & provide the care & security that person needs FOR LIFE.

Natalia I googled bbc complaints and it was really straightforward from there. One of the categories was 'bias' which made it pretty easy to pick!

If you want the test I'll support you having it. If you want to abort I'll support you doing that and you don't have to give a good reason, you don't have to give a reason at all. That's what being pro choice means. It's not for me to designate one reason better than another. But don't try and convince me that testing and abortion don't go hand in glove. And don't try and pretend that we aren't screening out Down's Syndrome in our population.

That's fair, Northern Lurker. But presumably anyone implacably opposed to abortion (or abortion on the grounds of Downs Syndrome) wouldn't submit to a test in the first place. So all you are doing, in effect, is offering more information to those who wish to have it.

gruffalo not wanting to argue but out of interest do you feel the same way about skin or hair colour, or autism, or lefthandedness, or cancer or any other matter that is genetic / congenital in nature?

www.bbc.co.uk/complaints/

For ease!

Thanks Gruffalo.

When
It is none of my or your business whatsoever. I support women's choices, whatever those may be. I am disabled, I would screen for my disability. I wouldn't put my kids willingly through it. I am pro-choice through and through.

Hear hear northern lurker.
I am a supporter of a woman's right to choose termination for any reason at all, but I think 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.
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?

If society wants to rob parents of that choice, then it needs to step up & provide the care & security that person needs FOR LIFE.

Quite. And - while it is distasteful to many to put any sort of price tag on this sort of thing - if society wants to rob parents of that choice, then it will have to accept that there is a large chunk of the healthcare budget that will be have to be devoted to this....and - as it is a finite pot - taken away from some other group of people who are ill/suffering/requiring care.

Would you walk away from your child because you couldn't cope?
No but I wouldn't actively choose it either and there is no shame in that. I would adapt and cope but I wouldn't choose a harder life for my child and my pre-existing children who would be negatively affected.

It is distasteful Natalia, you are right. Your post makes me shudder, as the parent of a disabled child.
Please examine the implications of your remarks. They are profoundly disturbing.

If you're a parent you could be placed in that position tomorrow

But that is surely the point of testing! And particularly of this test which, if I have understood it correctly, means that instead of a probability based test for the majority, pregnant women will be given a binary outcome. They will know whether they are going to be in that position while they are in a position to alter the outcome.

I genuinely thought I was losing my mind, the rest of the internet has gone crazy about this documentary and I had to turn off part of the way through.

The way she reacted to that woman's story of her termination. The woman should not have had to apologise for discussing her experience, especially when she was asked to discuss it in the first place!

Hayley from Down's Side Up is fantastic. Really brilliant, and hit the nail on the head regarding language and attitudes. That's what the problem is, not the NIPT. Healthcare professionals need training on the language they use; society needs an attitude adjustment related to Downs Syndrome. Shaming women who opt for the test and who opt for termination is not the way to endear people to your cause.

Except it seems to have worked, because everyone is raving about it. In my pregnancy with DD, had a test shown up Downs Syndrome, I would have terminated. Had she been diagnosed at birth, I would have relinquished her for adoption. Because we weren't in a position to cope, not as young students with limited resources and practical support. These days my answer would probably be different, but I still will have the screening.

NIPT is a safer alternative to amniocentesis and CVS. It will potentially save lives. Women should not be denied access to screening.

So many times I wanted to just scream "It's not all about you!". It's about the families who need to know about a diagnosis of Patau or Edwards or any other number of conditions that aren't compatible with life. They deserve to know the implications; they deserve to know what the prognosis is; they deserve to know what to expect. To advocate for these families being forced to go through the horror of late miscarriage or stillbirth or neonatal death is a truly horrific attitude.