Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

its about distance I think.
I believe other people want to convince themselves that what we do is so extraordinary and special that they ( as just 'normal' people) won't be asked to cope with that.
Of course the truth is that the judgement about whether you can cope or not is only ever validated if you try.

'you cant equate any of those with ending a life!'

You missed my point which is that people can make informed and intelligent decisions and the right decisions for them about having or not having children without actually having the experience.

If you have to experience something before you can decide whether you'll cope or not then arguably nobody should have children at all!!

As I said I have made a decision not to have a 3rd child. If you follow some of your arguments to their logical extreme I'm not in a position to make this choice without trying it first!!

When actually I think you have to trust that people are capable of making their own choices about their bodies and their families.

someone should invent the RL or shouldn't they.
and
I do in RL and I think I scare people

No 5 candles I didnt miss your point, I knew what you meant, I just didnt think you expressed it very well. The 3 kids also doesnt work because there is no life there yet: the equivalent to that would be a person choosing not to conceive due to a genetic risk factor, not ending a life after conception.

I do accept though that not all people believe life begins at conception. I, however, do.

Why make it all about personal experience riven? Yes, I personally have met people who feel this way and I have read various case stories and we've both met people and read about people who have terminated their pregnancies so that they didn't have to feel this way.

Sometimes your arguments sound a bit like if it's not your experience or what you personally feel then it's not valid

Ah, I see why it's irritating now peachy.

I get it as a teacher too though. The 'Ooh, I couldn't do that'. I actually take it as a compliment but I get that I chose to do it.

oh dear 5candles, am doing pgce next year maybe- will be mega-targe... eeeeeek

I don't know about 'correct information'. As I understand it doctors etc have to be quite neutral and factual. They can't influence your decision either way even if your child has not got sn. TBH it's their job to outline possible outcomes etc. I see that must be really hard if it's you, your life and your child but really I don't think it's their job to be either positive or negative.

And BTW I completely, completely agree with all your points about prejudice, lack of support for disabled people etc.

But riven as I've said my discussion is going beyond just my personal experience. When I debate I debate issues not people.

I don't see why I'm not entitled to make choices for myself and have opinions just because I'm not disabled. I think that's just another prejudice.

There are zillions of things that I haven't got direct experience of but have opinions about. As do wel all.

Has anyone just seen C4 news? Quite a big segment about ante-natal testing and DS this evening.Maybe worth a watch on C4 + 1 at for those interested...

And riven I've already told you that I also know many disabled people and work with them and my father is one. But TBH I would have the same opinions regardless. You don't have to experince something personally to be able to have an opinion on it and make a choice about it otherwise our conversation and outlook would be increbly limited.

....

shes gone to watch Holby...

'Society paints the disabled as 'burdens' as 'horrifying' or 'deformed' that you'd have to be some kind of saint to look after.'

I agree with you that this terrible and shocking. Don't you think things are changing though? And rapidly? Certainly the students I teach (some who need constant care, feeding, toileting, a scribe) and their parents often describe incredibly positive attitudes.

'Help with caring is rare.'

Agree and shocking. But again it surprises me that you and others seem to be downplaying the hardships of bringing up a disabled child. I know that once born you have no choice or don't want to make that choice anyway. I know that we all love our children however they turn out. I know I would love my own children whatever, whatever, whatever. And that I would cope if I had to. But I wouldn't want to. I wouldn't want to have to cope if I didn't have to. And I do know (partly through witnessing parent's friend's child and partly though my father's experience of MS and partly through what I have read etc) that it is incredibly, incredibly hard which is not to undermine the joy and rewards etc etc but it is hard.

And again, even though the things you talk of - the prejudice, the lack of support and all the other things I hear about and know about - are not of you or you child's making they are still REAL. And awful.

'How can most people make a rational decion?'

Actually I think I'm perfectly capable of making a rational decision. I really have faith that the vast, vast majority of people are.

In fact, the rational bit for most people is the easy bit - the weighing up of facts and figures. The hard bit is the irrational - the feelings, the love.

And I am 99% sure what my rational decision would be. Not based on ignorance and fear and everything else that your suggest.

However, I am much less sure about what I would decide irrationally if faced with the reality and the blood, love and heartbeat of it.

Sorry to be mawkish about it.

I don't agree with any of that.
At all.

To say you know that you would want or feel x or y in a situation that you have not encountered is total and utter rubbish.
You can have a view, form an assessment and make a reasonable guess.
But that is all

'To say you know that you would want or feel x or y in a situation that you have not encountered is total and utter rubbish.'

I think I just said that I couldn't.

'You can have a view, form an assessment and make a reasonable guess.'

Yep. Exactly.

And what most of the people here are trying to say is that the 'information' available predominately makes people think that they could not cope.
The vast majority of people not only cope with an SN child but find it as rewarding an experience as their NT children

The information available is skewed.

'The information available is skewed.'

I don't know what you mean by this.

I didn't think any of the information I received during my 2 pregnancies and antenatal testing was at all 'skewed'. In fact, it was very often so incredibly neutral, factual and objective that it was hard to know what to do with it either way.

As far as I can see there is really no 'information' that can make you choose to have a child or not. That is an entirely personal and individual decision.

I'm sure there is a lot of prejudice out there and a lot of hardship and a lack of support for people with disabilities but as I've said there is also some overwhelmingly positive stuff and attitudes. And increasingly so.

In fact, you could argue that on this thread at least there is a 'skew' in the other direction. i.e. an emphasis on the positive and no attention at all or dismissal and trivialisation of some very real concerns and problems of living with or being the parent of someone with disabilities.

Am just replying to OP right now...
I suppose the answer is, that some people like to be as sure as possible that nothing is wrong....and if tests for other things will become available then those people would test for all those aswell...

I personally had the normal tests (like Triple tests) and whilst in my later pg's trying to avoid scans to some part, I did wanted a scan, incase my boys would have inheritat my cleft lip and palate , but I for me it was basically a matter of wanting to know so I could prepare....
Personally, probably because I have a cleft lip/palate) I find it shocking that women are offered Abortions when a scan shows a cleft lip and/or palate, because, whilst not a walk in the park, it's NOT the end of the world....
Personally I would not have known though what we would have done if ttest had found that any of the boys had Downs Syndrome....I really don't know. For me it would not have been an issue about not being able to love a child wiht Downs syndrome, it would have been more about the whole longterm picture...! I know this makes me sound horrible....but I just could not say!

I think, it is kinda different if your child is born and you then find out somehting is wrong...
btw...Cerebral Palsy tends to happen during/after Birth, doesn't it? Or am I confusing something....?

did you not read my post.
It is perfectly clear.
Having a child with a disability is portrayed in terms of hardship to be endured.
That is notthe experience of most SN parent,

I don't agree with you at all. You make your choices based on what you think. I will base mine upon what I know.

I think this thread has shown that peoples prejudice aboout disabulity is so entrenched that they argue with the people experiencing it.

This is twaddle
I am off to my boys
Good night