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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?

1005 replies

wannaBe · 15/09/2008 16:50

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?

OP posts:
pagwatch · 16/09/2008 14:39

squiffyHock

I told his dad and his dad said
"ahhh - the big ponce"

2shoes · 16/09/2008 14:45

"Ds1 judges people entirely ( and without apology) upon their abilty to recognise his brother as a really cool human being - he calls DS2 his bullshitometer."
pagwatch, your ds sounds brilliant. sounds like he would have a lot in common with my ds.

sarah293 · 16/09/2008 16:06

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pagwatch · 16/09/2008 16:12

riven
I was talking to a guy today who's dad uses a wheelchair.
His fav comment ever was from a woman that said hi to him and asked where he was going.
"Sainsburys" he said.
"ohhh - do they mind?" she replied

sarah293 · 16/09/2008 16:22

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expatinscotland · 16/09/2008 16:27

'My sister said to me a few months back that she didn't think I could make friends easily because people don't know how to talk to me. because they can't make eye contact,'

I have a blind pal and I remember the first time I said, 'See you later . . . ' and then just stopped and was silent and he just said, 'Happens all the time. And you will see me later, but I won't.'

Miyazaki · 16/09/2008 16:29

Littlemydancing - great post

TinkerBellesMum · 16/09/2008 16:33

I've just ended up in a similar discussion to this on FaceBook on the "Lower the abortion age limit to well under 20 weeks". I was quite annoyed at someone's response to me:

"[TBM] you said "If it comes down to judging quality of life then I don't think that's something anyone can do for another human being"

Surely its a mothers job to judge whether "her" quality of life is suitable for a baby to be born into!"

Can't find words past

fivecandles · 16/09/2008 18:47

There a couple of issues that I still feel strongly about.

The assumption that those people who choose a termination do so out of fear or ignorance rather than out of a considered, informed and agonisingly personal choice.

It's not just a question of PERCEPTION.

People's fears are often perfectly legitimate. It IS hard to bring up a disabled child regardless of the reasons. Of course the problems may be partly or wholly because of other people's prejudice, or the lack of support or the system rather than the child's needs themselves but these are still problems regardless of where they're coming from and whose fault they are.

Yes, I would be afraid of bringing up a child with a severe disability including Downs not because I am ignorant about Downs in fact precisely for the opposite reasons.

It was MY CHOICE to opt for antenatal testing and it would be MY CHOICE how I responded to any results from those tests (and I can't be 100% sure how I would have responded if faced with the reality) but my personal decison feelings and choices are exactly that - personal - and I really don't think what i would or did or might choose has anything to do with how I feel about other people's choices which I absolutely don't ahve any opinion about in that I respect whatever anyone else feels is right for them and their family.

2.) That is not to say that if I had given birth to a disabled child or if my children should become disabled for any reason I wouldn't have loved them just as much or cared for them because I know that I would have. But I still may have chosen to terminate the pregnancy BEFORE they had become actual people as the earlier poster said. I certainly would have wanted the choice and the information.

What I mean is that the two positions are not necessarily incompatible.

i.e. to value and love your disabled child but to wish that you'd had the option of termination before it had become a child IYSWIM

And to say oh well you can't possibly know until you've been in that position of course is true but it doesn't mean your choices are any less valid.

My choosing a termination does not mean that I wouldn't have loved the child if it HAD been born IYSWIM but that wouldn't make my choice to terminate any less the right choice IYSWIM. Talking hypothetically here.

And those parents who HAVE got disabled children shouldn't see other people choosing terminations for the same condition for example as in any way a reflection of their feelings about the parent with the disabled child or the child itself.

I personally have chosen to only have 2 children, that doesn't mean I think that is the right choice for everyone or that I don't respect others' choices to have more thatn 2 children. But the fact that I am certain that if I had a 3rd child I would love that child doesn't undermine the validity of my choice not to or the rightness for me.

Does this make any sense.

And I'm glad jimjams that people do feel they can talk about their decisions to terminate etc just that earlier posters were saying that they'd never come across people who felt that way. And there are certainly some people on this thread who I would find very difficult to talk to honestly given their very hardline attitudes and judgments.

fivecandles · 16/09/2008 18:54

'And she confided even though she knew my personal feelings about abortion of disabled babies because she is a friend and I would support her.
Kinda blows 5candles theory out of the water there. '

riven I think you may be contradicting yourself. Nothing to do with a 'theory'. Earlier you were saying that you DIDN'T know anyone who felt this way and I must hang out with different sorts of people from you. Now you're saying that actually you DO know people who feel this way!!

fivecandles · 16/09/2008 19:06

This is actually what you said earlier riven:

'you must hang out with different people than me then. Of course parents wish disability doesn't exist but I've never met one who wished they'd terminated.'

So perhaps you can see where the confusion has arisen?

Peachy · 16/09/2008 19:17

Trying to explain at weightwatchers today why i didnt manage to get out exercising last week

'my dh was away and i have 4 kids, 2 are sn and 1 is under six months old'-

I tell ya, i couldn't have got a more dramatic reaction if I had said it was because I had been boiling kittens! The audible gasp was immense, then silence for almost a minute before 'the oo and I think my life is tiring' etc.

Why do people think its any more ok to do that? I feel judged, often, for having the boys (condition not testable for, not that it would change anything). When i had my kids I didnt hand over my passport to the human race or voluntarily sign up for a silent order- and I bet seeing that reaction, or the judgemental twats at the pta last night who tutted because ds3 was running in circles- puts people off continuing with an sn pregnancy.

There are people who are fairly blase about termination for sn- I am related to two- but I suspect societal response to sn has as much to answer for in terms of making people feel they wont cope as any of the realitie of the situation.

fivecandles · 16/09/2008 19:19

And one more thing. You can't KNOW what it would really be like to go sky diving, or be a vet or do an degree in Statistics or have a child at all doesn't mean that you can't make an informed decision that you're just not up to it. Of course, if you HAD to then you might well be able to cope but that doesn't mean that your decision not to shouldn't be respected. And the reality is that parents of disabled children are not better than any other parent. They are put in a position where they have to cope and since it is the most natural thing in the world to love your tiny baby of course they love and get pleasure from their children the same way everyone does.

Peachy · 16/09/2008 19:20

oh come on 5candles- whatever standpoint you take, you cant equate any of those with ending a life!

sarah293 · 16/09/2008 19:22

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sarah293 · 16/09/2008 19:24

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fivecandles · 16/09/2008 19:24

Peachy obviously I wasn't there but could it not be that the people at weightwatchers were just in awe at how well you deal with what you deal with?? I would be. Why would that offend you?

pagwatch · 16/09/2008 19:26

TBH I think I would find you very hard to talk to as well fivecandles.

I don't really see that as having a downside though.

fivecandles · 16/09/2008 19:27

riven I think my point was that it's possible to love your child but still wish you'd had the option to terminate before it was a child whom you loved and there are many people who feel like this. As I've said I can see why they might be reluctant to admit their feelings (to you).

sarah293 · 16/09/2008 19:28

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fivecandles · 16/09/2008 19:29

because there are a lot of people or attitudes in general which make parents feel ashamed to admit that they're not coping or couldn't cope or are really quite miserable none of which means that they don't love their child.

pagwatch · 16/09/2008 19:29

Peachy
I get shite like that a lot too.

I always think that "I couldn't do what you do" is the worst example of that.

I always want to say either
no of course you couldn't I am actually a superhero clevely disguised as an averagely knackered mum
or
well they wouldn't let me give him back so I guess I'm stuck

Peachy · 16/09/2008 19:29

I wasnt offended, mildly surprised: it takes a lot to offend me, and as offered as an example. I do wish I didnt get that reaction and nobody should be in awe of me, I am not that great a parent or wife. I cope, thats about it. I cant understand why loving your kids should get that- dont the vast majority of us?

expatinscotland · 16/09/2008 19:30

yes, pagwatch, you are blessed. God chose you because he knew you could cope .

Peachy · 16/09/2008 19:32

Pag i tried the superhero bit once

(in reponse to '4 kids? wow')
'And did you know I sat my finals with a 5 week old as well, and got an A. I am amazing'

te trouble is in RL they don't have or , and that mum now thinks me very odd LOL

RL is too scary, I prefer mn

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