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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Today's ruling re Down's Syndrome

693 replies

Shirazboobaloo · 23/09/2021 21:09

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

OP posts:
LangClegsInSpace · 24/09/2021 23:29

This is from the judgment:

The RCOG, the Royal College of Midwives and the Society of Radiographers have produced a Consensus Statement entitled ‘Supporting women and their partners through prenatal screening for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome’, which provides more information for healthcare professionals and women about the screening pathway. This was published on 2 December 2020. It includes a section which describes how counselling both before and after screening is recommended, as well as the importance of presenting information and support in a non-directive way. The statement also refers to concerns raised by women and their families that they felt their decisions had been challenged and makes clear that their decisions should always be accepted and respected. The Consensus Statement has received comments from a number of organisations, including the Nuffield Council on Bioethics, Antenatal Results and Choices, the Down’s Syndrome Association, Support Organisation for Trisomy 13/18 (SOFT), Positive About Down’s Syndrome, the British Maternal and Foetal Medicine Society, NHS Foetal Anomaly Screening Programme and the Down’s Syndrome Research Foundation.

Don't know how good it is or how well it's being followed but it sounds hopeful.

GreenGloves · 24/09/2021 23:30

For people judging women who do abort DS, is it not a cruelty to the child to be brought into the world with a mum or family that doesn’t want it? Do they not deserve parents who will love them as much as able-bodied children? The DS children and adults I know are much loved by their parents and families, surely it’s what we want for all children?

LangClegsInSpace · 24/09/2021 23:32

There's a lot of interesting stuff in the judgment. The claimants relied heavily on the UN Convention on the Rights of Persons with Disabilities (UNCRPD) whose committee has made statements saying it's discriminatory to have different cut off dates.

The judgment includes the text of a joint statement between UNCRPD and the Convention on the Elimination of Discrimination Against Women (CEDAW) in relation to abortion rights:

“A human rights-based approach to sexual and reproductive health acknowledges that women’s decisions on their own bodies are personal and private, and places the autonomy of the woman at the centre of policy and law-making related to sexual and reproductive health services, including abortion care. States should adopt effective measures to enable women, including women with disabilities, to make autonomous decisions about their sexual and reproductive health and should ensure that women have access to evidence-based and unbiased information in this regard. It is also critical that these decisions are made freely and that all women, including women with disabilities, are protected against forced abortion, contraception or sterilization against their will or without their informed consent. Women should neither be stigmatized for voluntarily undergoing abortion nor forced to undergo an abortion or sterilization against their will or without their informed consent.

States parties should fulfil their obligations under articles 5 and 8 of CEDAW and CRPD Conventions respectively by addressing the root causes of discrimination against women and persons with disabilities. This includes challenging discriminatory attitudes and fostering respect for the rights and dignity of persons with disabilities, in particular women with disabilities, as well as providing support to parents of children with disabilities in this regard. Health policies and abortion laws that perpetuate deep-rooted stereotypes and stigma undermine women’s reproductive autonomy and choice, and they should be repealed because they are discriminatory.

In order to respect gender equality and disability rights, in accordance with the CEDAW and CRPD Conventions, States parties should decriminalize abortion in all circumstances and legalize it in a manner that fully respects the autonomy of women, including women with disabilities. In all efforts to implement their obligations regarding sexual and reproductive health and rights, including access to safe and legal abortion, the Committees call upon States parties to take a human rights based approach that safeguards the reproductive choice and autonomy of all women, including women with disabilities.”

(my bold)

Mjfdrjjbf · 24/09/2021 23:43

@LangClegsInSpace thanks for this - need to finish reading the judgement. Yes yes yes to decriminalising abortion.

@Teapiggies thanks for engaging with us!! Smile

@spink lots of love to your little one

I’m off to bed.

Teapiggies · 24/09/2021 23:44

Night @Mjfdrjjbf Brew

cloudacious · 24/09/2021 23:47

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.

When you put it like that, yes why not. Let's be honest and say it doesn't matter so much because they're wanted less and have less worth as a result. So it's acceptable to do something to them that we wouldn't dream of doing to another child.

This is not about women's rights. This is about the lives of people with disabilities being considered of less value to the able bodied. And the need for that disgusting fact to be enshrined in law.

Teapiggies · 24/09/2021 23:50

@cloudacious

But how does the law undermine the value of people like Heidi? And why, in your view, does the right of Heidi to feel valued come before the right of a woman to have bodily autonomy?

cloudacious · 24/09/2021 23:59

I don't know how you ask the first question with sincerity. Explain how it could avoid it.

The right of women in this instance is either not used and therefore unnecessary, or incomplete, insofar as the right is to do with them rather than the child's disability and should be evenly applied. Explain why satisfying the wishes of Heidi and others like her need make any difference to women's rights when this is either unused or incomplete in the first instance. Why leave it there, unnecessary, unused, partial and offensive? How is that optimal for women?

Incidentally Heidi is a woman too. Obviously her rights to have equal worth in our society don't matter.

LangClegsInSpace · 25/09/2021 00:05

What on earth are you talking about?

Teapiggies · 25/09/2021 00:18

@cloudacious Equality means having the same rights as every other person in the UK. Heidi does.

Being offended is not a good enough reason to intervene in another person’s bodily autonomy. Jehovah’s Witnesses do not have blood transfusions, which is their choice, but they don’t get to choose whether other people have them. An environmentally concerned person may object to somebody having 17 kids, but they don’t get to intervene and stop that person from having more children. Do you get the gist?

Motorina · 25/09/2021 01:57

Thank you to @LangClegsInSpace for posting the link to the judgement. It is, indeed, worth a read, not least because of sections like:

The essence of the claim is that it is impermissible to differentiate, as the 1967 Act does, between pregnancies where there is a substantial risk that, if born, a child would be “seriously handicapped” (the terminology used in that Act) and those where it would not. The Claimants focus on cases of Down’s Syndrome (“DS”) but accept that their arguments would apply to any case where there had been found to be a risk of “serious handicap”.

Whilst Ms Crowter claims - and may believe - this is about protecting the dignity of people with Downs, this is in fact an attack on the right of women who find out they are carrying a foetus with severe abnormalities to terminate post 24 weeks. Even where those abnormalities are severe, profound, or are incompatible with life.

A number of people on this thread who have had a TFMR have spoken very articulately about why that option is necessary. Awful, tragic, but necessary. Others have posted links to accounts which say similar.

That option is not, as @cloudacious says, "unnecessary, unused, partial and offensive". It is absolutely necessary and used, albeit not typically for Downs. I understand why Ms. Crowter finds it offensive and distressing. It is distressing, most notably for the mothers who end up choosing it as the least awful option. Ms. Crowter's distress does not outweigh the right of those mothers to make decisions about their body and their pregnancy.

It's an aside, but you know what I find "partial and offensive"? The truly awful care we give to people with additional needs. I knew one family with a profoundly disabled teenager who subjected the mother to what in any other circumstances would be domestic violence. Except how do you call it that when the perpetrator is non-verbal and is unable to understand what they're doing? He was 6ft, strong, slept two or three hours a night and needed constant supervision. She was a tiny slip of a thing, with a haunted expression and frequent visible bruising.

Social services stepped in, finally, when he pushed her down the stairs, breaking her arm and fracturing several ribs. By 'stepped in' I mean 'put the mainstream sibling into care' because mum couldn't provide a safe environment. The additional needs child stayed home, because no placement could cope with him.

So imagine the mother: cast on her arm, broken ribs. One child taken away because the environment is unsafe. Having to provide 24/7 care for the child who injured her - who is likely to injure her again - because his needs are too severe for services to support him safely. Changing his nappy one handed whilst he throws punches at her.

That can be the reality of having a profoundly disabled child in this country. If Ms. Crowter chose to campaign to rectify that appalling lack of a safety net then she would have my total support. The lack of support families in similar situations recieve is deeply, profoundly offensive. 200 odd women a year making very difficult decisions in very distressing circumstances is not.

Lockdownbear · 25/09/2021 02:04

@Motorina that's awful poor woman. I pray she has managed to get proper support for her disabled son. Bloody typical of SW to take the easy option, remove the child they can easily place. No concern for the mum or the impact of care on the other child.
SW cab be really horrendous at stepping in too little too late.

MattyGroves · 25/09/2021 04:22

@Rinoachicken

The problem with Heidi looking for equality for people like her is that the majority of people switch DS will NOT be ‘like her’.

The harsh reality is that we are crap at providing good care for people with disabilities in this country. You have to fight for it, self fund, give up your career, give up your own dreams and plans for the rest of your own life as you care for your child and then adult child for the rest of your snd their life, with little to know help from anyone else.

It is important that people go into it with their eyes open. If they are prepared for the potential challenges, if they feel emotionally, physically and financially well equipped and able to do it then great.

But they should also be allowed to say you know what, I can’t do that, it’s too much.

Totally agree. I had a late TfMR (late because I really didn't want to terminate so waited for more information and my baby's condition was complex and very rare) and this is why.

I hate the narrative that TFMRs are "to prevent the child suffering" - sometimes that will be true, with Edwards or Pataus but sometimes it's not primarily about that. I did it primarily because of MY quality of life and I think that's ok.

If there was decent support for parents of disabled children - childcare, full access to school, respite care - I might have made a difference choice

lljkk · 25/09/2021 05:21

Does anyone remember the news stories about late term abortion for cleft palate, maybe 12 years ago. "Cleft palate" sounds like a simple cosmetic facial problem , easily enough fixed with surgery, but it can be used to describe deformities where the skull is almost cleaved in 2. That's how I feel about Downs: it sounds simple but very often is not what you thought it was.

i was under impression that access to late term aborition isn't easy, 2 doctors have to sign it off in good conscience. I'm not imagining a better system, myself.

Re Downs: I have a cousin in mid30s with this condition. His quality of life has mostly been good, but not easy for his parents (who adore him). He's approaching end of life, now. It is profound disability.

ArcheryAnnie · 25/09/2021 06:18

This from teapiggies
Being offended is not a good enough reason to intervene in another person’s bodily autonomy

And this from Motorina
I understand why Ms. Crowter finds it offensive and distressing. It is distressing, most notably for the mothers who end up choosing it as the least awful option. Ms. Crowter's distress does not outweigh the right of those mothers to make decisions about their body and their pregnancy

...speak to me. Exactly that. I'm sorry Heidi is distressed, but its not her body or her life we are talking about. She can make decisions about her own body and her own life, including her own pregnancies, but she doesn't get to make those decisions about any other woman's body or life.

anon12345678901 · 25/09/2021 06:47

Heidi or any other DS person who maybe offended by this rule, need to realise they cannot make decisions on another's body autonomy.
Her being sad and offended is her own issue to deal with. Not try to take away body autonomy for others.

Covidworries · 25/09/2021 07:09

Reading this thread has made re think about pregnancy with one child. Due to my medical condition scans were preformed at 12, 20 and then about every 4 weeks to term on. With all pregnancies we opted not to screen for DS. However, with one pregnancy at every scan this was checked and we were asked again had we screened for DS and then asked if were we sure? At the time i was convinced the uestions meant the Baby would have DS which they didnt.

I haven't thoight about it since until now, other pregnancies I was asked during initial midwife appt and at first scan but not again. Im now wondering again what caused them to ask so much during that one pregnancy

sashh · 25/09/2021 07:42

@cloudacious

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.

When you put it like that, yes why not. Let's be honest and say it doesn't matter so much because they're wanted less and have less worth as a result. So it's acceptable to do something to them that we wouldn't dream of doing to another child.

This is not about women's rights. This is about the lives of people with disabilities being considered of less value to the able bodied. And the need for that disgusting fact to be enshrined in law.

I can't speak for anyone else but as a person with a disability I wish I had not been born.

Don't think you speak for me.

Do some reading on the devastating cases in Ireland when the foetus was given 'equal status' as a woman, in reality the foetus became more important.

Women having to have a pregnancy test before their cancer treatment and that treatment being stopped if they were pregnant.

The woman whose body was decomposing around her but the hospital could not turn off life support while the foetus had a heart beat.

Savita Halappanavar.

RealBecca · 25/09/2021 08:19

I found the case confusing - wants a ban on abortion for disability...ok...well, what happens if someone wants to abort foetus with no known disability? What are her views on that?

RealBecca · 25/09/2021 08:26

Its likely also easier to adopt out a healthy newborn than a child with a potentially very serious medical condition.

There are so many circumstances this could be needed. Imagine being a mother of 2, pregnant, hisband passing away amd knowing that between 2 of you you could uave cared for 3 but as a single mum, one with additional needs that are unique to each situation and having to juggle multiple schopls, apppintments, transport, all sorts.

Thisisworsethananticpated · 25/09/2021 08:33

Real
I think her issue is that downs babies can be aborted between 24 weeks (usual cut off ) and full term

She isn’t trying to ban abortion
But she is upset that downs , a condition she lives happily with , is seen to be so awful as to merit abortion as late as 38 weeks

It’s very emotive and it’s not black and white

Someone earlier said it would have been better if her severely disabled DD was aborted , as her quality of life is so awful
I totally respect that view

And I also respect that Heidi leads a rich and happy life and is offended by this ruling

We have entered very quickly into a time where such decisions , and some unusual ways of having babies are normalised

And I think it’s OK to take a step back

People might not agree with Heidi , but I’m pleased she got a chance to share her views

And I’m horrified by the Texas ruling , I’ve had abortions . But I can also see that downs is not the same miserable prognosis as other disabilities

And I respect the right of people with downs to say that

Sirzy · 25/09/2021 08:35

But she is arguing against something that doesn’t happen. Their hasn’t been a single case of post 24 week termination for Down’s syndrome in the last 10 years. That would suggest that this is part of a much bigger overall plan to remove women’s autonomy over their bodies when it comes to abortions

Suzy39 · 25/09/2021 08:36

@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.
Please dont be so ignorant.

The babies that die due to a TFMR at this late stage will not have personalities. They will be unlikely to survive a labour and/ or survive long after or, live on life support or with little quality of life. It is not to do with the family's ability to 'cope' like it's a minor inconvenience, but the quality of life of the child.

My little boy would have effectively have had little brain function. I took the pain so he didnt have to. I wonder what his 'personality' would have been like but sadly, it is unlikely he would have been able to breathe unaided so it is only a wonder. I didn't take that away,his condition did.

And btw to the posters that think that the fairies don't come and take babies that have passed away, they don't. You are painfully induced, go through labour then produce milk as your body craves a baby to nurture. I also had psychosis.

OuiOuiBonjour · 25/09/2021 08:44

@RealBecca

I found the case confusing - wants a ban on abortion for disability...ok...well, what happens if someone wants to abort foetus with no known disability? What are her views on that?
This particular case wasn't about a ban on abortion for disability. That would be utterly insane nowadays and wouldn't even make it to court.

It was about wanting a change in the law so that disabled babies (with non life threatening illness) could no longer be aborted after 24 weeks.

A healthy baby cannot be aborted after 24 weeks. A disabled baby can be aborted at any point up to birth.

The petitioner felt this was blatant disability discrimination and that unborn healthy foetuses are granted more rights than disabled ones as they are protected from abortion after 24 weeks but disabled babies aren't and theoretically can be terminated right up until the point they are in the birth canal.

It was an attempt to make the 24 week limit apply to cases of non-lifethreatening disability. Not to ban abortion on grounds of disability altogether.

Teapiggies · 25/09/2021 08:45

@Sirzy

But she is arguing against something that doesn’t happen. Their hasn’t been a single case of post 24 week termination for Down’s syndrome in the last 10 years. That would suggest that this is part of a much bigger overall plan to remove women’s autonomy over their bodies when it comes to abortions
Is that true? I thought there were some cases albeit a tiny number?