I have just been called ableist because I support antenatal screening

[noideawheretostart]

And I'm so blind sided by it that I don't really know where to begin with how incorrect that statement is.

And no one talks about adults with Down’s.

I don't know about no one, but there is certainly a tendency to concentrate on cute, pre schoolers rather than adults.

A good friend of mine has a relatively high functioning but not independent living DS brother. They, along with their other brother, are all in their 40s now and he lives with his parents who are pushing 80 and getting increasingly frail.

The parents are deeply religious and expect my friend to take on the care of her DS brother when they are gone. She has repeatedly, for decades, told them this will not be happening and encouraging them to look into residential accommodation for him. They just tell her she'll 'change her mind' (she won't). She loves her brother but he can be aggressive and is easily twice her size. And as of now he doesn't show signs of Alzheimer's but who knows what the future holds?

Oddly enough the parents have never once asked other brother if he'd be willing to take on the task. Funny that.

When deciding whether to continue a pregnancy it is the whole life, not just the baby bit that has to be taken into account. Many situations involve life long care, and where there are siblings involved their needs also have to be taken into account. Nobody should be called names for not wanting that for their family.

So what if they aren’t independent

It matters to the person who has to give up their own life to care for them!

I'm not saying some people don't want to do that but having a disabled child often turns one's life upside down so it's not just about the child's quality of life - it's about whether there are people equipped to care for them.

That child never being independent might also impact other children's lives, especially if they have disabled siblings who also need round the clock care.

I honestly do not understand how women wouldn't want antenatal screening. It's so so selfish

I loved my unborn baby enough to care for her whatever her needs, and I believe that all lives are worth living.

That’s hardly selfish!

None of this is easy or simple so sweeping generalisations - on either end of this - are not going to be accurate or helpful. completely agree.

@ArnoldWhatshisknickers OK, so I worded things clumsily Virtually no one talks about adults with Down’s and how that impacts upon the parents, who are often full time carers until the end of their lives, well into their child’s middle age.

I loved my unborn baby enough to care for her whatever her needs, and I believe that all lives are worth living.

You cannot bring “love” into it. You cannot argue that a woman who decides to TFMR just didn’t love their unborn child enough.

Sometimes love means suffering a termination so that your child does not live a life of suffering. I firmly believe that.

Personally, I think that knowledge is power. It doesn’t matter whether an individual would choose TFMR or not. Surely it's beneficial to not be blindsided by a serious medical issue at birth?

I totally agree with this. I was blindsided at birth, DS has a physical disability which will be significantly challenging to him for the rest of his life. He didn't need any medical care as there is no treatment but the impact of discovering this immediately after birth was devastating. I then had to deal with the baby blues at the same time as dealing with the grief. I had some very intrusive thoughts in one of the most vulnerable periods for any woman, never mind with additional emotional stress added to it. It was the worst time of my life.

Had this been diagnosed during pregnancy, I would have still been devastated but I doubt I would have terminated and been far more prepared at birth, I would have come to terms with it and been able to enjoy my newborn the same as most other parents.

I do appreciate that I was fortunate he wasn't severely ill but can see the value of knowing this during pregnancy if it had been the case.

I think the argument here is not about screening because screening doesn't automatically equal termination. There are multiple reasons to screen. I think it's TFMR which is the talking point.

You cannot bring “love” into it. You cannot argue that a woman who decides to TFMR just didn’t love their unborn child enough.

I’m not saying that a woman making a different decision would be lacking in love. Maybe I worded that badly.

But it certainly does take love to be willing to effectively give up your life to care for someone.

So whilst I wouldn’t say someone is selfish for making the opposite decision, I really think it’s wrong to suggest that those choosing to bring their baby into the world in spite of disability are selfish (which is the point I was responding to).

I loved my unborn baby enough to care for her whatever her needs

Ok then.

I was blindsided at birth too and the worst thing about it (apart from everyone falling silent and no-one wanting to tell me) was the fact the hospital didn't have the apparatus available (very poorly performing hospital at the time).

Plus, had I known about the genetic condition, it would have made my DC's early lives so much easier as they suffered greatly from delayed medical intervention on the basis that the rare conditions they actually had were dismissed as being highly unlikely and other treatment (and a 'wait and see' approach in one case) was tried first while my DC continued to suffer and have their lives at risk.

I same thing every time this comes up. Friends on mine had a desperately ill baby. But because it was screen he had surgery the minute was born and it’s totally fine now. He’s the subject of a paper because his condition is rare and as most of the world can’t screen generally these desperately ill babies die moments after birth. Which would have happened to him. He needed a specialist surgeon who would not have been present if screening wasn’t done. So it’s a no brainier.

I also say this is as the parent of a disabled child. My sister decided against a second child because she couldn’t cope with a disabled child and was getting older. It broke my heart for a moment but my head knows why she made the decision she did.

I don’t understand why people actively limit the information they have, regardless of what you think you’ll do why would you not get the information ?

Fuck off Miaowing.

Nasty as that sounds it is not really a great reach to think it may become the norm here, as well as in America and other places without an NHS.

What @Somerville said

Smoking, obesity , contact sports injuries, car accidents etc. are all avoidable and potentially costly.

Since when was health care dependent on avoidable?

Luckily for us everyone is entitled to the best treatment possible regardless of personal opinions if what happend . Unless you are god then you dont get to decide.

Has someone got that philosophy question about which baby should be terminated and which not based on disability and you end up with a world without Beethoven or Roosevelt or Hawking or (loads of people who gave a lot to the world) and keep plenty Hitlers and Bin Ladens? Or is my point enough?

But you've gone ahead here, like many others, and talked about individual choices, rather than the meaning as a society.

I didn't, actually, Goosefoot. Instead of discussing individual choices, I talked about the fact that that 85% number is not simply made up of best case scenarios of the high functioning person with Downs (who we as society typically think of when we discuss this issue) but also of a great many cases where that person would be born extremely disabled who would often have little chance of survival beyond birth without extensive, painful surgeries.

It's not as simple as saying if we as a society provided better resources, this number would be lower. Not without knowing a lot more about the individual circumstances of each case.

Some choices are not simply about whether one is willing to have a child with a manageable disability. Some choices are much more bleak: do you hold on and watch your newborn die in pain after birth or do you let her go now, before she can feel pain? No amount of money or social acceptance will help you here.

If you KNOW you have no compassion and significantly poor skills in applying logic for the rest of your tediously long life then I think its the height of selfishness to expect Mumsnetters to spend seconds if not minutes in front of your ridiculous posts.

The general point is that the NHS is already crumbling, underfunded, understaffed.

Year in year out there are suggestions made about how some conditions can be 'opted out' of NHS care. Smokers and obese individuals already are refused some surgeries in some areas. It WILL happen more and more.

It is not outwith the realms of possibility that the scenario Mioawing described will be discussed and even implemented in some way!

I refused all screening with my 2nd child because of my experience with it during my 1st pregnancy.

Had the blood test and then a few days later hot home to a message on my answer phone telling me I had an appointment for an amniocentesis as my markers had come back high risk. Just like that. No counseling or anything.

After a lot of angst I went for the appointment where the obstetrician explained what would happen - she would do the amnio and then if ten results came back positive for Downs I would have a termination. Again, no choice given to me and no discussion. I asked her what if I didn't want a termination and she looked at me flabbergasted.

I left without having the amnio and paid for specialist ultrasounds at a fetal medicine unit. I refused the triple test with my 2nd baby.

That consultant was ableist in my view. It was inconceivable to her that anyone would risk having a baby with a disability so what is that view if not ableist?

I don’t understand why people actively limit the information they have, regardless of what you think you’ll do why would you not get the information ?

Because it's not always a case of 'have the information' vs 'not have the information'. There's other factors too.

e.g. - I turned down the quad screen. I knew it wouldn't have given me a definite diagnosis - it could only sort into 'low risk' and 'high risk'. NHS would have offered amniocentesis if I'd taken that screening and had a high risk result, but the risk of miscarriage from amnio was not one I was willing to take, so either: I'd have ended up with a 'low risk' result (which wouldn't have reassured me) or I'd have ended up with a 'high risk' result (which would have given me stress without telling me anything useful).

I'm fine with other women making different choices to the one I made. I'm less fine with the midwife who tried to pressure me into getting screening anyway during my last pregnancy, though. It should be up to the woman herself what screening she does or doesn't get and nobody else.

@MNHQ I am very saddened that those posts were reported and deleted. Reporting them I could understand, it isn't a pleasant topic / thouigh, but to delete them tells us that MNHQ find discussing upsetting and emotive subjects to be taboo!

It wasn't as if they were crudely put, just bluntly! And now we can't properly discuss that part of the issues because we are in danger of being deleted for possibly quoting / referencing a deleted post!

Ludicrous!

If you want a level of discussion that involves such nasty suggestions about disabled people then you need to go have them somewhere that allows posts of that type to stand, CuriousaboutSamphire.
I for one am very glad that MN doesn’t.

society could care for disabled people if they wanted to

Lumiere, what do you mean by this? Genuinely interested.

While I think there should be more support for families with disabled children, I do feel things have got better since we have had the NHS (disclaimer: I wasn't around before the NHS). Plus, families being given help to care for their disabled children in their own homes seems to happen more routinely than it used to (I know there are still awful incidences of disabled children being moved halfway across the country for residential care, which is obviously terrible and needs to change).

But I do feel that disabled children have more rights and protections than they used to and, having invoked the Equality Act several times with health and education issues, it does seem like things are moving in the right direction.