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

15:11pointythings

Things have come to a pretty pass when one can't talk about a baby in the womb being an unborn life without it being read as a polarized position. If I was given the opportunity to take away the option of termination from women, I wouldn't do it.

I don't think, and I don't expect you think, that terminating a full term pregnancy is ever helpful for a woman unless the baby will be in great pain and will have no quality of life. I say no quality of life. That's not the case for people with DS. It is simply not a severe enough disability to be described in those terms and to suggest it is highly discriminatory to those who have the condition. They find the distinction around abortion incredibly hurtful and demeaning in a world which already has many undermining views about them. If it never happens anyway, then yes, let's level up and stop making that particular distinction.

You seem to think that anyone who doesn't hold exactly your position must hold a completely different position, yet there is always a spectrum of views even within opposite 'camps'.

I do think babies in the womb have moral rights and so would most people if you suggested there was nothing 'wrong' with ending the life of a baby who would be born next week. I don't particularly trust anyone which is why I'm glad we have laws to live by.We have laws to protect children which apply to their mothers too so this is not new. Having a late termination is damaging but I accept there may be circumstances in which it's necessary. I just don't think that not wanting your DS baby to exist is generally a good enough reason and if it never happens then it doesn't need to be legal. Otherwise level up.

I don't believe those bringing the case this week were only interested in chipping away at abortion rights. Many parents of DS children have been hurt and saddened by this and what it says about society's attitude to their children. Many of these parents are women. This viewpoint shows a lack of understanding about what it's like to live a disabled life where you are seen as 'less than'. It's a constant battle against discrimination with a lot of the 'rights' that are supposedly in existence quietly taken off the table in real life, when there are no able bodied people around to notice. That treatment chips away at families too, making the existence of an unused, offensive and discriminatory law all the harder to bear. And yes those parents are fighting all the time for better lives for their children, of course they are.

I completely agree that 'pro life' campaigners should put their placards down and go volunteer at sure start or anywhere they might actually be useful.

@Teapiggies thank you for articulating what I've been struggling with.

As far as I can tell, Ms Crowter's core argument is "I feel discriminated against" and "I'm really upset." She is of course entitled to her feelings.

What she is not entitled to is for her feelings to take priority over the right of a pregnant woman to make decisions about her own healthcare.

I agree with those who say that this is about restricting abortion rights and not about protecting people with DS. The court made the right decision.

Thank you to those who have shared your experience of TFMR. I'm so sorry for your loss.

for all the women who have had to make the heart rending decision to have TFMR and are finding discussion around this court case distressing.

Thank you to those who have shared their stories here and on other threads. It's important for people to understand the reality, and what these claimants sought to take away from women facing incredibly difficult choices.

This topic will always be one that arouses strong feelings and opinions but whatever people's views, a bit of sensitivity would not go amiss.

@cloudacious - Heidi's backers are absolutely trying to do that. This is an attempt to roll back abortion rights.

Many parents of DS children have been hurt and saddened by this and what it says about society's attitude to their children.

But this isn’t about society’s attitude to their children, is it? It’s about other women and their potential children.

If it was truly about bringing the termination gestation limit in line with one another, they should campaign for routine NIPT testing for all pregnant women who want it. That way there will be much fewer late diagnoses and women will have the opportunity to terminate early if they want to.

But something tells me they won’t.

The argument about feeling hurt makes no sense if abortion without cut off date is implemented.

Then no one would be able to be hurt or anything else. Because late abortion would not be a value judgement, it would just be a conversation between a woman and her doctors.

motor but this option is never used anyway, it just uselessly exists causing pain to those who have it hard enough. If it's never used, it's not undermining anyone's rights to remove it or level up.

@Motorina quite. I can understand why this is a sensitive topic for Heidi, and parents of children with DS.

I do question whether she stumbled across this issue of her own accord. It’s a rarely used and complex piece of law that you don’t stumble across very often, so I would be surprised if it was the former. If her mother or others told her (which I think is far more likely), then I think they hold some responsibility for her hurt feelings, frankly.

Maire is appealing the ruling, by the way. She’s just put out a new crowd funder.

I would say I am pro choice. I don’t think women should have to continue with a pregnancy that they feel they cannot cope with.

However as someone with a young family member with DS I can’t help feeling a bit sad about it. I’m just glad that in practice it hardly ever happens.

I was shocked to read that case and the result. I’m pro choice but allowing abortion up to birth is mad. In the last few weeks before birth a baby is capable of surviving outside the womb and is already a little person with personality. Saying it’s legal to kill it because the family can’t cope seems to me to be no different to saying a family should be allowed to smother a newborn baby if they can’t cope with it.

@Skysblue

I was shocked to read that case and the result. I’m pro choice but allowing abortion up to birth is mad. In the last few weeks before birth a baby is capable of surviving outside the womb and is already a little person with personality. Saying it’s legal to kill it because the family can’t cope seems to me to be no different to saying a family should be allowed to smother a newborn baby if they can’t cope with it.

That's not what the law says. The law says that an abortion is legal after 24 weeks if:

that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped

I'm going to suggest having a read back through some posts here where people have shared the reality of what that means for the 200 or so women every year who have to make that heartrending decision.

@Skysblue - haven't you read all the posts - you can't be pro choice and think it's not OK to terminate a pregnancy at 41 weeks (not all pregnancies last 40 weeks) apparently.

What's annoyed me about this thread is the posts saying "No women should be forced to give birth"
How the hell do you think a baby leaves the mothers body? By magic? When a late termination takes place the mother has to give birth, whether the baby will survive or not. A c-section is giving birth. It's nonsense to say no pregnant women should be forced to give birth. The pregnancy doesn't magically disappear.

No mother should have to worry about how their child will be provided for by the state, should they need support as an adult. I have a friend who has saved every spare penny she has so her DC are well provided for as adults. She shouldn't have to, she should be confident that her DC will be provided and cared for as adults with SN. I'd be happy to pay higher taxes to cover this.

I think anyone not happy with the current abortion legislation should be campaigning for better adult social care, before campaigning for a change to the law regarding abortion.

It’s a rarely used and complex piece of law that you don’t stumble across very often

That's not true. It is well known and causes outrage to the families most affected by it - who are not those who have used it (apparently this group doesn't exist) but those who are valued less as a result of it. It's a thorn in the side of many parents so inevitably their children will know.

The judgment is available here:

www.judiciary.uk/judgments/crowter-v-secretary-of-state-for-health-and-social-care/

It's worth reading at least the summary, although the full judgment has a lot of interesting stuff in it.

It's a very good thing that this case failed.

The claimants argued for personhood and human rights for the foetus, including right to life and the right to not be discriminated against. Several countries and states have gone down the route of ascribing personhood and human rights to foetuses and it always leads to a very dark place for women's rights in pregnancy.

Even if you are 100% anti-abortion there are many good reasons to oppose this approach. This article outlines some of them:

onlinelibrary.wiley.com/doi/full/10.1002/hast.791

It's not necessary to grant the foetus personhood and human rights in order to impose limits on abortion (if that's what you want to do). We know this because we have limits in the UK without going there.

The claimants' other argument was that having a different time limit gives the message that disabled people's lives are worth less, that this affects societal attitudes towards all disabled people and therefore this is indirect discrimination.

I have some sympathy with this view but I agree with the judge - even if there were a causal link, this would be lawful because it's a proportionate means of achieving a legitimate aim.

There are far more obvious government actions that give the message that disabled people's lives are worth less - start with the benefit system and the shockingly bad state of social care and support. I agree with PP who have questioned why the claimants are not campaigning around these.

@cloudacious

It’s a rarely used and complex piece of law that you don’t stumble across very often

That's not true. It is well known and causes outrage to the families most affected by it - who are not those who have used it (apparently this group doesn't exist) but those who are valued less as a result of it. It's a thorn in the side of many parents so inevitably their children will know.

I said rarely used, not rarely known about.

The only reason it is in the news so much at the moment is because of those families starting a crusade against it.

I’m willing to bet that if they hadn’t, it is unlikely that Heidi and other people with DS would be too aware of it (like the rest of society). So they have brought the debate to their own front door in that sense.

And nobody is valued less as a result of the law. I had a termination as a teen in an abusive relationship. Does that mean I judge teen mums who didn’t take the same decision as me, and feel their children are worth any less than others? Of course not.

Even if it did, what do you suggest? Forcing women to go through with pregnancies they don’t want? Resulting in neglected children or an overwhelmed care system? Because that really won’t do much to improve the public image of life with SEN children.

@Treaclepie19

And I've just realised that seems a dig st you *@Lalliella*. It wasn't at all, the opposite in fact.

@Treaclepie19 that’s ok

@Clymene

Removing women's right to choose is central. The woman interviewed on WH today with spina bifida wants the government to stop plugging folic acid. Because she thinks it demonises SB when actually it's not the most important thing about her.

She glossed over the fact that most people with SB have severe incontinence issues, hydrocephalus, and other neurological co-morbidities. As well as lower limb paralysis.

I totally understand that people who are living their best life with perinatal disabilities hate the idea that women may terminate if they know their baby has that condition. But it's not their job to police other women's families

seriously? So if someone could wave a wand and take away her spina bifida, she would refuse?

@Mjfdrjjbf

I’m probably going to regret wading into this but

Firstly, those who’ve shared stories of TFMR, I’m sorry for your loss and thank you for sharing.

I’m pro choice and think the court made the right decision.

I also have a child with DS. A lot of the information being shared on this thread about DS is wildly out of date and incorrect. I know a lot of families with children with DS. The idea that the norm is non verbal, aggressive, doubly incontinent… is simply untrue. There are elements of parenting a child with additional needs that are challenging, but also a lot that is hugely rewarding. Understanding and education of people with DS has come on hugely and more and more people of Heidi’s generation and younger are achieving things that would have been unthinkable a generation or two ago. A lot of research has been done on the “Down syndrome advantage” - it’s generally considered to be one of the easier disabilities to parent. The vast majority of families with a member with DS are proud of them and think they are a positive influence (again this is research based not anecdotal)

It is STILL a woman’s legitimate choice whether to carry any pregnancy to term. But please let’s not perpetuate out of date stereotypes of DS to reinforce that - abortion on demand should be acceptable without generalising or exaggerating the challenges faced by a minority group.

Your personal experience is very similar to the professional capacity in which I looked after those with DS years ago....all that I remember is most needed support with some daily living skills but really were not into having huge emotional outbursts, and it was possible to hold a conversation. No where near some of the grim stories being portrayed here on this thread. I am not going to deny there are exceptions though, just like any other disability.

@Teapiggies the law is widely known in the DS community because it’s not uncommon for women with a confirmed diagnosis of DS to be repeatedly asked whether they are sure they want to keep the baby, including until late in pregnancy. I know a number of women who’ve been through this (asked multiple times up until full term if they are sure they want to keep the baby as it’s “not too late”) - it’s traumatising for them and really, really poor care.

FWIW I think it’s a bit of a separate issue - I think the choice should remain, but I also think the info that’s given to women and the way women with babies with DS are often (not always) treated during pregnancy is horrific.

@Mjfdrjjbf I agree that once a woman decides to continue the pregnancy, medical staff should stop asking her (as long as she knows she can change her mind at any time).

Regarding the info, what do you think women should be presented with in an optimum scenario?

@Clymene

Removing women's right to choose is central. The woman interviewed on WH today with spina bifida wants the government to stop plugging folic acid. Because she thinks it demonises SB when actually it's not the most important thing about her.

She glossed over the fact that most people with SB have severe incontinence issues, hydrocephalus, and other neurological co-morbidities. As well as lower limb paralysis.

I totally understand that people who are living their best life with perinatal disabilities hate the idea that women may terminate if they know their baby has that condition. But it's not their job to police other women's families

Fucking hell!

Spina bifida was very common in the 70s, everyone seemed to know a kid in a chair with spina bifida. I also know a kid who had spina bifida but had surgery and was OK except incontent.

18 weeks with my IVF baby, phone call your baby is high risk of spina bifida. Fuck! However thinking about the above I can cope with that as long as its mentally OK we'll cope.

Then I googled - fuck that's the easy end of the stick - some spina bifida isn't compatible with life.

I eventually got an apology MW had screwed up baby was fine but OMG! My heart goes out to every mum and dad who've been told your baby has a problem.

@Mjfdrjjbf I also agree - training for clinicians should change to ensure that no undue pressure is exerted on women. Just as women should be trusted with the decision to abort, so should they be trusted with the decision not to do so.

In terms of the care and health needs of people with DS, I agree that things have come a long way - but the prevalence of young onset dementia in that population as compared to people without DS is still much, much higher. That is absolutely something that should be considered in the process of making a decision.

I was offered a termination on medical grounds at 37 weeks when they found out my daughter had CDH. I was told that she would never be able to live a normal life, that she would be tube fed, on oxygen and likely to need round the clock care. She is and requires none of those things. She's a perfectly healthy child who attends mainstream school and functions completely independently. She goes to dancing, swimming, rainbows. At her last check up her lungs had grown and developed to the point that a junior doctor wouldn't be able to tell there had been an issue from a chest X-ray.
She is in no way "incompatible with life" quite the opposite. The issue I have with the ruling is that certain conditions make late term abortion absolutely fine, where it isn't without said conditions. It's the discrepancy that irks me. Should be the same across the board. It's either 24 weeks or it's term

@Teapiggies Really good question and to be perfectly upfront here, I had a postnatal diagnosis so didn’t have to go through this. But PHE policy is to present screening/diagnostic results in a neutral manner (“chance of DS” not “risk of DS”, no “I’m sorry”), and that v often isn’t followed. Currently - and you can see it on this thread - many parents hear about a very worst case, medicalised model of disability. “Your child has an x% chance of y condition”. Some of that information is valuable, but it’s important to recognise that a) many people with DS are v healthy (my child for instance has never had a hospital admission) and b) a medicalised model is only some of the picture. So I’d also advocate proper information about the lived experience of DS. The charity Positive About Down Syndrome do this brilliantly (and follow it up with exceptional support - they really do the leg work in supporting families and children). They have an online book called Nobody Told Me which is worth a read. It’s obviously a particular view and they, to a degree, have an agenda (it’s not a particularly anti choice agenda but they are, obviously, quite positive about DS!) but it’s a very useful counter to a laundry list of medical problems which may or may not happen.