To think you don't see many people with Down's syndrome anymore?

[Neonoen]

When I was a school there was a boy with downs syndome in my class. At secondary there was the first boy and then another one too.

I worked with a man with Downs syndrome at my first job (he taught me how to use the photocopier the first day after I wasted a whole reem of paper ). At the same time there was a woman who travelled on the same bus as me with Down syndrome and another who worked in McDonald's.

Yesterday on the TV they were interviewing that man who has the lead role in a new film (he has downs). DS asked why he spoke like that, I explained and then realised none of my children know what Down's syndrome is or have ever encountered anybody with it. There's no children with downs in their schools, no families with any members who have downs and no businesses that I can think of who employ anybody locally with Down's syndrome.

Other than the SN session at the local pool, I can't remember when I last encountered anybody with downs.

Is it just me? Is it a result of advanced ante natal testing?

In fact thinking of it I'm surprised at the lack of any experience my DC have of people with disabilities.

I really don't want to offend with this and hope I've used the correct terminology.

I apologise, I was very quick to jump at feline.

I think the fact remains that you either accept a woman has complete bodily autonomy pregnant or not or you don't.

If you do then you accept that a woman has the right to abort any pregnancy for any reason she sees fit at any stage.

The argument about what the reason to abort seems to me to be irrelevant. It's noones business but hers.

^I think the fact remains that you either accept a woman has complete bodily autonomy pregnant or not or you don't.

If you do then you accept that a woman has the right to abort any pregnancy for any reason she sees fit at any stage.^

But that's simply not true. As a society, we have decided that there's a stage in pregnancy beyond which it's not acceptable to terminate a healthy foetus. My argument is that a child with DS shouldn't automatically be considered unhealthy.

And thank you, christinarosetti - that's pretty much exactly how I feel.

My ex has DS in his family when I was pregnant both times (late 00's) the midwife made in clear that should the prenatal test come back as baby having DS I would be expected to terminate
I didn't have any tests - much to her disgust
Seems that DS people mix with other DS people at school and after school clubs tho

That's why it's so hard, yet so important, to not let assumptions and emotion cloud the issues.

It's important that women who have a baby diagnosed with Ds ( or any other condition) whether ante or post natally have access to up-to-date, accurate information.

It's equally important that individual women have the right to make their own choice, based on their own pregnancy and life situation.

I can fully appreciate where the sentiment behind the Don't Screen Us Out campaign comes from, but it is nevertheless putting moral values on pregnancy choices, which is why I can't support it.

I do of course support the right of every woman who chooses to continue a pregnancy with a concerning diagnosis and the right of the child born to have the same rights as other children.

It's possible to do this at the same time as supporting women's right to end a pregnancy at any gestation.

But that's simply not true. As a society, we have decided that there's a stage in pregnancy beyond which it's not acceptable to terminate a healthy foetus. My argument is that a child with DS shouldn't automatically be considered unhealthy.

I think you've summed it up very well Felines, and I completely agree with you.

A lot of the time now councils want to close SEN units within mainstream schools and have them in special schools instead where a lot of the time there is much better support.

I also found feline's post quite goady (the "drooling" post), because we aren't talking about her child. Or Sally Philips' child. Or any other loved, wanted child, whatever their health. We are talking about children that don't exist, and never will, because the pregnancies of other women were terminated.

The idea that women get very late-stage terminations because they haven't done their homework and don't really understand the issues is ridiculous.

The idea that women get very late-stage terminations because they haven't done their homework and don't really understand the issues is ridiculous.

I don't think anyone's suggested that's the case. I certainly haven't.

Felines

Yes I understand the present law but in my view it's wrong as it denies a woman bodily autonomy only until a certain point in her pregnancy after that she is forced to carry a baby she may decide she doesn't want.

However I totality see the law won't change and I understand why.

Sally Phillips seeks to deny pregnant women the right to a simple non invasive test for DS to replace the risky option of amino.

With the greatest respect I couldn't care less about her views or anyone else's views on here concerning another woman's body and choices.

To assume women terminate because they fail to understand the benefits or otherwise of having a child with SN or are encouraged by HCP to look on the black side is incredibly patronising.

well the new tests are a good thing then Felines - because the earlier people have the information the less chance of terminating post 24 weeks

well the new tests are a good thing then Felines - because the earlier people have the information the less chance of terminating post 24 weeks

Absolutely. I think I said above that the new test is a great development.

I'm 38 and I'm not sure if there are regional differences but I never met anyone with down syndrome at all when I was growing. Our neighbours child had a physical disability and went to residential school and my mums friend had a child with special needs who went to special school who we knew but even though my own sibling was in and out of hospital I don't think I ever had any exposure to anyone with down syndrome until I'd had my own children (18 years ago now)

The idea that women get very late-stage terminations because they haven't done their homework and don't really understand the issues is ridiculous.

Sorry for going slightly OT here but the point I was trying to make is that women should not have to do any "homework" when they have been given a diagnosis. That is already a stressful enough time. Factual, impartial, balanced information should be available for women to make informed decisions. This is not always the case.

Of course women need to do 'homework' fran.

Each person or couples journey through information, speaking to friends, family, weighing things up, thinking ahead etc is an individual one.

No amount of factual, impartial advice can make that decision for a woman.

I would expect a medical professional to give me the facts relating to the condition, not my partner, neighbour or best friend. I would turn to them after I had the facts in order to make my decision.

When I got our "bad news" it was very rushed, lots of "probably's" and no concrete stats. I went home and googled (it is a rare condition) and most of the stuff that came up was from US, talking about cost of treatment, insurance etc. My head was in a complete spin and I just wasn't thinking straight. I went into pregnancy knowing that I wouldn't have terminated, but someone else may have terminated going by the doctor's (negative, dated) vague words, which in my case (and I know that I am certainly not the only one) turned out to have very little truth.

But their choice to terminate would be the right one for them surely.

As not terminating was right for you.

'Facts' are hard to come by, particularly for rare condition, as you know.

The very nature of pre natal testing is full of possibilities and probables; it's not that health professionals don't 'know' the facts or are trying to hide them, it simply isn't as straightforward as that.

Also, without wishing to sound insensitive, people may want different facts. You may have wanted facts about how many children with this condition are in mainstream school etc and another woman may have wanted facts about will a termination now affect future pregnancies.

Making decisions about what to do about a pregnancy with an unexpected diagnosis isn't a quick or easy decision for many people (as you well know). It's very patronising to suggest that women make a decision to terminate based solely on a doctor's vague, negative, out of date words.

It would be the best thing for them if the correct info was provided. I don't believe that this is always the case though. There are some who would terminate over something that might be seen as relatively minor on the anomaly spectrum, such as a missing or shortened limb, cleft lip etc. For others it may be something more significant.

From a discursive psychological perspective language used is very important, particularly regarding what is an ultimately life changing event, such as having a child with a potential disability. Regarding the antenatal diagnosis of DS for example, if the specialist immediately said " The vast majority of people with Down syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives" (copied from a website) it could reframe the way that people view the condition (and in turn the people who have DS) They might still terminate, but at least they have the accurate picture.

I am not trying to remove anyone's right to terminate btw. I see the way that info is not being accurately conveyed as an ethical issue.

I apologise if I have come across as patronising, I don't intend this at all. I just women (and their DP's) to be privy to all of the information available, regardless of the outcome.

How do you know that that information isn't provided? You say that it wasn't to you, but you can't generalise that to every single woman who has a pregnancy with a dx of Ds.

Or that women aren't signposted to the Downs syndrome Association?

The ethical issue is whether women are able to make an informed choice about their pregnancy. I don't see foetal medicine units as the primary place to provide postnatal information to women. There should definitely be better signposting, but the information and facts to be considered are complex and manifold. Not something that an foetal medicine unit can give a quick leaflet on (as you well know).

fran, I think it's fair to say that women who are pregnant with a baby with a concerning diagnosis can think of nothing else at the time, and for the following weeks, months and longer.

Regardless of what decision they make about continuing the pregnancy or not.

It does come across as incredibly patronising when you say that another woman in your situation may have terminated because of the language the doctor used, and suggest that 'the facts' are simple, easy to provide and keep up to date and have the same significant for all women.

If the specialist immediately said " The vast majority of people with Down syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives" (copied from a website) it could reframe the way that people view the condition (and in turn the people who have DS) They might still terminate, but at least they have the accurate picture

Facts and figures aren't neutral in this type of way. They might also give figures relating to early onset dementia (which is 2/3 times more common in DS than the non-DS population). That's also information, but it isn't a very nice thing to think about and doesn't fit with the above 'positive' narrative of normality and inclusion.

I think the narrative of GCSE's is just as 'biased' (as very few people with DS have a good set of GCSE's or even take them) as the negative 'medical' narrative.

It also makes it very difficult for parents whose children have DS and aren't at the GCSE/engaging in theatre/working in a cafe end of the spectrum. Do their children not count just as much?

Inclusion in a mainstream school could be a great opportunity, but there are few specialist school places left and very hard to get. That means some people might be misplaced. Why should being in a specialist environment be derided somehow as a failure? And, if people need a specialist school, it is worrying there is such poor funding in this area.

I just don't think narratives like this are ever neutral, the Sally Phillips one is as biased as the medically bleak one, but perhaps what we need is people to be exposed to both. I don't disagree with Sally Phillips documentary for this reason, it's her personal take on this.

I think it's important to acknowledge there is selective fact inclusion by everyone, because of course people want to feel their choices and views are well supported and justified (medics to assess this as a medical condition, those with children with DS for people to see the everyday life of individuals as people).

My daughter's special school is more inclusive than any mainstream setting she ever attended. I agree it is a red herring! Children with special educational needs supporting to reach their full potential, whatever that is as they are worth it :)