Campaign to remove prenatal tests

[Wondermule]

Posting in Feminism as from what I can see AIBU can get really nasty. I read this article a few weeks ago and it’s been playing on my mind ever since.

www.theguardian.com/society/2021/jan/26/ken-ross-disabled-person-as-famous-as-brad-pitt-on-screen-down-syndrome

Has the Guardian really given column inches to a MAN who is lobbying for prenatal tests to be withheld from women?! Not only that, it seems to be painting him in quite a positive light about it all!

Just posting for other’s opinions really.

This is an area that people who advocate or have an interest in disability awareness are pretty concerned about, so actually I think it's a fairly important public discussion

What is an important discussion? Whether women should be forced to raise a disabled child that they don’t feel they can cope with?

"I, like many others, don’t like ‘Down’s syndrome’, because it erroneously implies that the physician who first identified the condition, John Langdon Down, also had it."

This is jaw-droppingly stupid. Syndromes are named after the people who identified them, not suffered from them.

And what about the other trisomies? My firstborn tested high risk for trisomy 18, which is often incompatible with life, and even when the baby is born alive the life expectancy is days or weeks. Luckily he did not have that, but we got extra scans and a NIPT because of that, and the extra scans led the doctors to notice an unrelated issue that would have killed me and the baby in childbirth if they weren't prepared.

Men pontificating about pregnancy choices, ugh. They never have to face the risks.

Man: women are making decisions I don't like.

Man: I'll campaign to stop them having the power to make the decision!

Does he find out the full picture of WHY we have prenatal screening and what he would be ushering in? No! Does he try to make the alternative choices more attractive? Also no.

Women should be able to access as much clear information on their pregnancies, bodies and options as possible. They should also have good support to make the best decisions for them and their situation.

This man can toddle off.

That's the thing, the nipt tests for a wide range of trisonomies, some incompatible with life.

He can jog on.
I grew up in the 80s with a sister with special needs and it was hard.
A test wouldn’t have helped as it was medical mismanagement of premature labour, but if it could have, my mum would’ve opted for it, to prepare. She’s Catholic, so she wouldn’t have terminated. Even if she had, her choice.
When push comes to shove, women will be told that it was their choice to continue with the pregnancy, so no, there is no more support and why didn’t you have a termination if you can’t cope? In fact, why did you even have sex in the first place?
Women are dismissed either way; evil bitches for wanting terminations, or selfish “want-it-alls” who should have made better choices.

@PotholeParadies

Absobloodylutely.

Want to reduce the termination rate?

Rich guy can lobby for improved support for families. Might mean he has to pay higher taxes though. He not keen on that?

It doesn’t reduce the termination rate at all.

Doesn’t matter though. His family can opt out of prenatal testing if they want. But he should not make that choice for other people.

It seems like there has been a boom in the last few years in disability campaigners turning their attentions to prenatal testing. I do worry that in pitting women against any other protected group, women will always lose.

No uterus,no opinion,simple.He can stick his plans wherever he's pleased.
Prenatal testing is not compulsory,it's a recommendation and women are free to have or not.
I chose not to have it but I totally understand why other people do.

@Wondermule

It seems like there has been a boom in the last few years in disability campaigners turning their attentions to prenatal testing. I do worry that in pitting women against any other protected group, women will always lose.

I feel like they should be able voice concerns. I don’t feel bad that most women choose to terminate (I certainly would), but perhaps if you personally knew someone with Downs, you might feel that they are not valued at all.

It also also might be a slippery slope. I also have to admit I’d terminate a child with autism if such a test existed, I could not willingly go into it (there are personal reasons for this).

But this article is not really very persuasive to me.

@ShowOfHands

the only difference with Down syndrome is that you have one extra chromosome and a learning disability

That's also rather dismissive of people's lived experience. My uncle had DS and it was responsible for a few more challenges and comorbidities than this sentence would suggest.

Exactly - as with so many conditions, there's a spectrum.

I know people with DS who chair committees, are mechanics, and have good physical health. At the other end of the spectrum are people who have a range of multisystemic effects (heart, dysregulated metabolism etc.) and complex needs.

Comparatively trivialising the condition and the associated care serves very few people.

Fuck him off. Hope there's more prenatal testing in the future. If I'd know my child had autism, I wouldn't have hesitated to terminate the pregnancy.

But if their concerns are that not enough babies with certain disabilities are born due to testing, then the only remedy to that is to reduce/remove testing and force women to have and raise children with needs they feel unable to cope with.

What else could ‘airing their concerns’ lead to?

This is a subject that is close to my heart. Our first pregnancy was terminated because our baby was diagnosed with a condition incompatible with life at our 12 week scan. Had we not known, then it doesn't bear thinking about what our son would have to endure after birth. He was so very poorly. I was so grateful that we were able to prevent his suffering.
It just shows incredible arrogance to think that screening is only meant to identify DS. There are so many conditions that are picked up through prenatal scanning.

My baby has unexpected cerebral palsy. It's bloody hard. It's had a huge emotional impact on us, not to mention I can't go back to work now so finances are not good.

I love ds and thankfully his condition may be mild, but I know for a fact if we were poorer, less experienced with children, there's no way in hell we could handle this. I would never begrudge someone else the choice. I also don't want the already limited support being stretched, which is what would happen if people went through with pregnancies they wouldn't have otherwise done.

This fucker should shut up and put some fucking money in the pot if he's so concerned.

Anyway, doesn't he have like 90 billion children and a nanny force. Hardly representative of normal life.
How dare he. I knew there was a reason I hated him the smarmy git.

I doubt he's trying to survive on 3 hours sleep a night the absolute dick.

Presumably more DS babies could go into the care system then. Be more worthwhile campaigning for greater support to parents of disabled children.

I thought Emmerdale handled the DS termination storyline well in that wasn't an easy decision without consequences but also had viewpoint of Rhona & Marlon who chose differently.

@WarriorN

Some babies with DS don't make it. They can have massive congenital heart issues.

Many have autism as well as ds.

Some are extremely capable and clever and can have a career, and healthy.

Women have a right to be informed. I refused first time round as felt capable (and I also feel as there's no test for autism, what's the point.) second time I had a young son to consider, a Dh who was v anxious and as an older mother, knew far too many women of my age who'd had late terminations due to types of trisomy that weren't compatible with life, including two who had ds.

The nipt test can be done at 11 weeks and so women are informed much earlier.

Exactly this. I didn't have the tests fist time round (we'd already had a lot of interventions) and I felt I would be able to cope. Second time round with fragile mental health, a young child and a husband who was also facing mental health challenges, I chose to have every test going with a clear acceptance of why I made that choice and what further choices I may then be faced with.

You only need to look at countries where there are barriers to abortion and less antenatal care to see what effect this policy would have. E.g. Romania under Ceausescu, where anti-abortion and 'pro-family' policies led to a huge number of children being abandoned after birth, particularly children with additional needs. By all means campaign for more funding and support for children with Down's syndrome so that women can feel supported to continue with their pregnancies, but without addressing the underlying social issues, this is just an inhumane policy of forced birth.

The controversy surrounding the Emmerdale storyline made me really uncomfortable.

The community objecting to the storyline were mainly parents of very young, very sweet babies/toddlers with disabilities, who were perhaps only a few years into the journey. And the more prominent campaigners are mainly very affluent people with no concerns around affording respite/care/therapies. I imagine it is very different caring for a very disabled adult child with a lot less money.

Buffster how is your son getting along?

By all means campaign for more funding and support for children with Down's syndrome so that women can feel supported to continue with their pregnancies

This doesn’t reduce the termination rate at all though, if you look at Scandinavia. The hard truth is that few would go through with such a pregnancy so this is the only real way.

That said, I’m absolutely against it. I would not choose to bring a child with Downs into the world.

My neighbour's daughter with downs syndrome is non-verbal, has heart defects that necessitated early surgeries and will never live independently. She is also delightful and my neighbour didn't even consider termination but she said knowing in advance helped the whole family prepare.

I can understand the successful, relatively healthy people with syndromes like Downs being upset over other people terminating pregnacys with serious medical conditions. It does make them look unwanted.
I've also seen a friend struggle with a decision.. fortunately for them, the further tests showed the baby had no Trisomy. But they didn't know if they could do it if the baby had had Trisomy.
I also had a University friend who knew that as an adult he would need to become the carer for a disabled sibling. He believed he could never have children of his own as his responsibility would be to his sister.

Like many things, this has to be a personal decision.

@Wondermule thank you. Really well, has been cruising and crawling so we are hopeful that he will walk. It's a long road ahead though.