Today's ruling re Down's Syndrome

[Shirazboobaloo]

Sorry to hijack AIBU for this but can someone explain this ruling to me please?

What I can't understand (from press reports) is how this has "come to this".

Who is Heidi Crowther and who are those supporting her?

I am genuinely confused but don't know where to ask

It actually wouldn’t. The European societies with the highest support standards also have the highest rate of termination of DS fetuses.

Yep, this. I do wish we could stop the pious bollocks about how "most women would opt to raise a child with DS if only there were more respite services and special schools." No, they would not. The Nordic countries with excellent support services and flexible working on tap have termination rates of almost 100%.

No, it wouldn't, because at the moment the number of babies with DS aborted AFTER 24 weeks is essentially nil. So it would not result in increases in the number of births of DS

@Kokeshi123

Do you have this stat? Big if true …

What is the justification for treating DS differently from other disabilities? If you can't terminate after 24 weeks for other disabilities why can you do so for DS? It suggests that DS is somehow "worse" than other disabilities. My friend has a daughter with DS and honestly she has the best quality of life. She is constantly happy and thinks the world revolves around her. As her Mum said, who wouldn't want to feel like that every day of their lives?

Your child isn't there to validate you, no matter how nice it is. One of my DC works with profoundly disabled adults, there are a fair few with Downs Syndrome and no two of them are similar in terms of ability. However, universal is the worry that their parents have/had about who will care for them when they are no longer there. (some of them are already dead, and at least 2 of the people with DS are in their 50s)

The high functioning ones aren't such a worry, but the others who are not capable of independent living are a worry to their parents. Some of whom are low income families because the one parent gave up work to become a carer and the other ended up in lower paid employment due to caring responsibilities. This is pretty much the case for most of the disabled adults in my DC's care, by the way.

The reason DS is the one that seems to be the exception in terms of abortion is, i think, due to how we screen and what can be screened for.

I know several families with DS children/young adults and they are, for the most part fine. But i know a few with profound disabilities and at least one has said to me that they would have aborted if they hadn't been persuaded against.

What i would like to see, as I would from EVERY SINGLE anti-abortion campaigner, is a realistic plan and support (in terms of caring, as well as cold, hard cash) for the family when the child is there. Where is that? How many DS children end up in the care system and go from there to another institution upon reaching adulthood? Who is caring for them?

Apparently it was said in the ruling yesterday that their where no recorded cases in the last 10 years which if true does make the whole thing even more pointless. There are only just over 200 post 24 week abortions each year for medical reasons

@Horst

At the end of the day the person carrying the baby should have the right to decide if they want to continue carrying that baby or not if they find out that baby will have a life long disability. Not everyone is able to to do that that’s why we have the tests.

If you ban these abortions you are forcing women to carry to term children they don’t want nor feel they can look after. You run the risk of back street abortions and frankly the number of disabled children placed into the care system from women who would just give them up would sky rocket. Where are all these people who will adopt a child with disabilities? All the foster parents capable of caring for them?

Yes some would end up with a mother who would accept truly love and be able to help them but for a lot you’d just be sentencing them to a live where they where unwanted/neglected or grow up forever in the system.

Agree with this. It's not fair on the children who are born with a disability to end up abandoned because they aren't wanted. Are these anti abortion people going to adopt them all? I think not.

As much as she has a good life and is high functioning as well, many are not born like that. Plus you cannot deny that there aren't people out there who tease people who have disabilities and make their lives miserable. So on top of being abandoned by their parents, they will ridiculed by some in society. That's a fantastic life.

@Sirzy

Apparently it was said in the ruling yesterday that their where no recorded cases in the last 10 years which if true does make the whole thing even more pointless. There are only just over 200 post 24 week abortions each year for medical reasons

That’s why this case isn’t really about DS abortions, clearly it’s being used to test the waters by anti abortion (anti women!!) lobby groups, if the ruling had been in Heidi’s favor, it would have opened the door for more attempts to further reduce women’s reproductive health rights.

Just watched Cbeebies this morning - a presenter was on who just happens to have Down's syndrome. He is holding down a job and more than likely leadinga fairly independent life.

We have a supermarket worker who has Down's syndrome in our local town. He does a great job.

I feel Heidi is right to keep up with her fight to change the law.

I had a child diagnosed with a rare condition I didn't know about until after the birth. Did I decide to abandon him because of it? No. He is mine and always will be.

I appreciate years ago lack of knowledge on Down's syndrome meant people didn't want to carry on with the pregnancy but as we learn more with education on learning disabilities it's clear that people who happen to have Down's syndrome can lead fairly independent lives. Often more successful than those who are NT but abuse drugs/alcohol and are costing taxpayers a fortune.

People like George on CBeebies are fantastic positive roll models without doubt. However we can’t let that distract from the fact that for many people with DS with the best will in the world, with the most supportive parents in the world, things like that simply wouldn’t be achievable.

With any disability it’s important that while we celebrate the positives and the amaxing achievements we don’t use them as a stick to beat those who may have the same diagnosis but their presentation means that level of independence simply will never be possible. We need to find a balance and not forget that these things are spectrums.

I’m pro choice, but I agree with Heidi.

“Terminating a pregnancy” three days before your due date isn’t a termination: it’s child destruction.

These incidents are, thankfully, incredibly rare, and I do not underestimate the torturous position mothers in these circumstances go through, but termination at 40 weeks etc should not be legal.

It actually wouldn’t. The European societies with the highest support standards also have the highest rate of termination of DS fetuses.

This sounds so nice to say but doesn’t actually change a thing. Sorry.

The initial quote on this was me. For clarity, I didn't mean that it would reduce the termination rate of DS foetuses. I meant that it would have a real and meaningful impact on the quality of life of people with DS. That's the 'real difference' I was talking about. I appreciate views will differ, but I think that would be a far more worthwhile way in which Heidi's advocacy could be directed.

Just watched Cbeebies this morning - a presenter was on who just happens to have Down's syndrome. He is holding down a job and more than likely leadinga fairly independent life.

We have a supermarket worker who has Down's syndrome in our local town. He does a great job

Again though as many have pointed out, you are focusing on one end of a huge spectrum. You see those who are thriving and that's great but what about all those who are non verbal, incontinent, unable to wash independently and with heart problems and other comorbidities?

The examples you site are fantastic but equally they are part of the problem just as much as the happy smiling child who is also often used. They show a stereotype that is so often the outlier and lead people to believe all people with down syndrome are like them. The reality is so so different.

@VestaTilley

I’m pro choice, but I agree with Heidi.

“Terminating a pregnancy” three days before your due date isn’t a termination: it’s child destruction.

These incidents are, thankfully, incredibly rare, and I do not underestimate the torturous position mothers in these circumstances go through, but termination at 40 weeks etc should not be legal.

But no one is terminating 3 days before a due date for shits and giggles.

This will have been a child who was loved and wanted and plans were in place for their arrival.

No one is deciding, fuck this, can't be arsed to have a baby. Their personal reasons are why they chose that options, that's not reckless or destructive.

@VestaTilley

I’m pro choice, but I agree with Heidi.

“Terminating a pregnancy” three days before your due date isn’t a termination: it’s child destruction.

These incidents are, thankfully, incredibly rare, and I do not underestimate the torturous position mothers in these circumstances go through, but termination at 40 weeks etc should not be legal.

It's worth remembering the statistics that @Aorh gave earlier. "In 2020, there were 236 post 24 week abortions. I can’t see that data, but assume the majority of those are closer to 24 than 40 weeks." The fallacy of babies being killed at term is just that - a fallacy.

There are occassional - very occassional - terminations in the last few weeks of pregnancy. These are invariably a much loved and much wanted baby who has a medical condition that means that they will not survive outside the womb. Things like no brain. The chest cavity open to the world. That sort of thing.

These are for women who are obviously, visibly pregnant. Who have painted the nursery. Bought the crib. Who - because our society is nosy about pregnant women - have to endure everyone saying to them, "Congratulations" and "Not long now" and "Have you chosen a name?" when they know that the child inside them is dying. Who reach the point that they cannot bear to carry the child any longer when they know that it will not survive.

These are women who have to be induced and go through a full labour of a baby they know will die. Who have made the decision that that is the least bad of all the awful options.

If you want to read a bit more about the reality there's a powerful (i.e. heartrending) article at jezebel.com/interview-with-a-woman-who-recently-had-an-abortion-at-1781972395. And Jen Gunter is always worth a read for an informed, if occassionally ranty, perspective. One example: drjengunter.com/2016/10/20/donald-trump-confuses-birth-with-abortion-and-no-there-are-no-ninth-month-abortions/

There are no easy answers and no easy solutions.

@FuckingFlumps

Just watched Cbeebies this morning - a presenter was on who just happens to have Down's syndrome. He is holding down a job and more than likely leadinga fairly independent life.

We have a supermarket worker who has Down's syndrome in our local town. He does a great job

Again though as many have pointed out, you are focusing on one end of a huge spectrum. You see those who are thriving and that's great but what about all those who are non verbal, incontinent, unable to wash independently and with heart problems and other comorbidities?

The examples you site are fantastic but equally they are part of the problem just as much as the happy smiling child who is also often used. They show a stereotype that is so often the outlier and lead people to believe all people with down syndrome are like them. The reality is so so different.

True, but what's your point? That he shouldnt be seen in case he persuades women to keep a DS fetus or gives a false idea of what it's like? These people are just living their life.

You'd hope a woman facing TMFR would have the information at hand from obstetricians, paediatric specialists and the internet to make an informed choice

True, but what's your point? That he shouldnt be seen in case he persuades women to keep a DS fetus or gives a false idea of what it's like? These people are just living their life.

Of course I'm not saying these people should never be seen, you're being disingenuous. What I'm saying is these are often the only people with down syndrome shown or seen and they paint a much rosier picture than the stark realities of most people who are born with down syndrome. It's daft to pretend this is a likely outcome for someone born with down syndrome and shows no understanding of the many many comorbidities or challenges that the vast majority will face.

You'd hope a woman facing TMFR would have the information at hand from obstetricians, paediatric specialists and the internet to make an informed choice

The trouble is until the child is born no one knows where they will fall on the spectrum. So she can only make a choice on what ifs and trust me no matter what she chooses she will always wonder what if...

Sirzy as a parent of two dc who have disabilities I for one am sick to death of only the best representation being shown.
Yes people who have disabilities are being represented more, but still an elite minority of that disability, there are a few models who have down syndrome, their features are very slight, at first glance they don't even appear to have it. Why not have models who have strong features? What's unpalatable about that? I remember being on holiday one year and there was a couple in their 80s with their dd who had down syndrome that we befriended. Her outbursts were constant. If she didnt want to do something or go somewhere she'd simply sit on the floor and refuse to move. Her poor mum would get so upset, they'd lost all their friends and family just werent interested. They'd provided a lifetime of care and seriously worried about dying. Where's their represetation and pat on the back for being too scared to put her into a care facility because they were scared of her being abused or drugged to keep her behaviour under control?

We show kids who have conditions like CP as happy kids smiling away from their wheelchair or achieving the unachievable. Great, but what about the kids scared and in pain from constant interventions that they dont understand? Or the ones that rarely leave the hospital and the pressure that brings to families? The list goes on and on..... Yes we get a glimpse of it from the odd tv series or documentary....... But held up as a representative of that disability? Well those kids and families just arent.

I actually think Katie Price has done a lot of good in showing the reality. Yes her son is extremely privelaged, the fact he's likeable goes in his favour massively but realistically he isn't going to take on the world and be independent. And he does need a lot of support and he does have a lot of challenging behaviour. And she's lucky she has the money to buy in support because most people dont..

Thats the sort of reality most people are facing. It's not all happy kids going off and living a normal, adult life. For so many it's an isolated, lonely existence. And with the cuts to social care it's got and is getting a lot worse.

Just watched Cbeebies this morning - a presenter was on who just happens to have Down's syndrome. He is holding down a job and more than likely leadinga fairly independent life.

We have a supermarket worker who has Down's syndrome in our local town. He does a great job*
That is the issue with Down syndrome- it is hugely romanticized. These are the exceptions, unfortunately not the rule. Many, many will with all the support in the world never get there. Yet they are set as examples that parents then feel they need to achieve for their Down syndrome child. These people are great role models and certainly amazing, but their achievements are very unrealistic for many.
A incontinent, nonverbal and aggressive teen is an equally likely outcome - the majority is somewhere in between but will need a lot of support and full 24 hour dedication from at least one parent for the rest of their life. Which will be longer than the parents’ life.

Personally I am very torn on this.

My goddaughter has downs and I would not change a single thing about her. She is a ray of light and joy and we all love her.

Her mum / my friend finds it disgusting that anyone would about due to Downs.

And, as much as the idea of someone not wanting my DGD because of downs breaks my heart, I believe that any woman should be able to abort for any reason at any stage of pregnancy.

Sex selective abortions obviously further complicate this stance, but both are indicative of inequalities in wider society which are what we should be addressing, not demonising women for making decisions about how they will cope in an unequal world.

I have a Grandson with DS,diagnosed before birth and there was NEVER any thought given to termination.
Am I supposed to believe his life is not as important as others?
This law has no place in the 21st Century.I suppose it is just another example of how selfish and self-centred the human race has become.

He's here now so yes, his life is important. Are you providing day-to-day care? realistically what is that like? is he one of the "lucky" ones who has few health issues and is high-functioning with a family who can afford to buy in help?

or when they are 80 are his parents going to be like the couple above who have lost all their friends and have nothing in their lives except caring for a daughter who can't live independently and are petrified what will happen to her when they die. They have, on the face of it ZERO quality of life.

So shove that in your pipe and smoke it. Women have, and still have (and hopefully will always have) the right to abortion. And as so many have said "as early as possible as late as necessary".

As for PP who mentioned sex-selective abortion. There are many many reasons that happens and they mostly boil down to coercion. And in countries where women aren't valued girl-babies who actually make it as far as birth are killed immediately. I don't think there is a person in the world who actually wants that.

Agree with PP that what we really need are much better support systems for people with disabilities, and their carers (so much support needed there) and it would be lovely to have a few more activitists talking about the harsh reality of life for families in this position.

FWIW when i had DC1 i blitely did the first test but refused an amnio on the grounds that while i am pro-choice it's not my choice. As it happens i could barely cope with a child, let alone a child with additional needs and if i were in that position again i would have the test and make an informed decision. And if termination was that decision, i would have to live with that.

to the brave pp who have written about their TFMR. It must be extremely difficult for you, but thank you because we really do need to hear about the reality of this.

@VestaTilley

I’m pro choice, but I agree with Heidi.

“Terminating a pregnancy” three days before your due date isn’t a termination: it’s child destruction.

These incidents are, thankfully, incredibly rare, and I do not underestimate the torturous position mothers in these circumstances go through, but termination at 40 weeks etc should not be legal.

A termination at 40 weeks might be what you refer to as 'child destruction' but if you are terminating at that stage it is because termination is you delivering a dead baby or delivering a baby that will have a short painful life.

I did write a description of a possible outcome but decided to delete it.

I agree about Katie Price having done a lot of good in that sense, the documentary she did last year gave a small insight into the realities of parenting a young adult with disabilities - both in terms of day to day and in terms of the battles to get what they need to help them develop as much independence as possible.

What if this was picked up on tests done in first week could euthenasia be used then? Or at any point in life that the severity became aparent?
FYI, in the Netherlands euthanasia is legal until a child is 1 year old. So babies born with profound disabilities can be killed.

This law has no place in the 21st Century.I suppose it is just another example of how selfish and self-centred the human race has become.
i assume you are not the one cleaning poo of the walls several times a day, having bruises from over enthusiastic hugs, and having slept no more than 3 hours in one go over the last 15 or so years? and are on universal credit etc because working is not possible with no social life?

I just have to add again that if you're pro choice you cannot add caveats to that statement.

Anyone who says they are pro choice and follows it up with the word but is deluding themselves that they are pro choice.

@HarrisMcCoo

Just watched Cbeebies this morning - a presenter was on who just happens to have Down's syndrome. He is holding down a job and more than likely leadinga fairly independent life.

We have a supermarket worker who has Down's syndrome in our local town. He does a great job.

I feel Heidi is right to keep up with her fight to change the law.

I had a child diagnosed with a rare condition I didn't know about until after the birth. Did I decide to abandon him because of it? No. He is mine and always will be.

I appreciate years ago lack of knowledge on Down's syndrome meant people didn't want to carry on with the pregnancy but as we learn more with education on learning disabilities it's clear that people who happen to have Down's syndrome can lead fairly independent lives. Often more successful than those who are NT but abuse drugs/alcohol and are costing taxpayers a fortune.

This is going to sound horrible but, as with many disabilities, the general public only see the "acceptable" ones on the media.