A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

gruffalo I agree with you, in terms of the decisions mothers have made regarding abortion. However, regarding law making and the advice given to mothers and their families, I think, there does need to be discussion.

I had stellar advice from the Birmingham Fetal Medicine Centre and I agree most hospitals need to be like them. Supportive, no suggestions of a right course of action and just downright brilliant but having been through it, I don't feel there is any change in the law required, I don't think there will be and to be perfectly honest, no I don't think everyone gets a say. Even the most empathetic person could not understand what having a positive diagnosis is like without going through it.

I watched this last night. I thought Sally Phillips was absolutely wonderful and I truly got what she was saying - that a world without so-called "imperfect" people would be a poorer place. I think she did a good job of NOT being too personal, actually.

When you think of all the evil cunts in the world, how can we say it would be improved without the presence of people with DS? I know they are two completely separate things, but that is what my heart not my head says to me after watching her thoughtful documentary.

I thought there was no judgement from her at all towards individuals who chose to terminate, none whatsoever. But the net effect if everyone terminates is no more individuals with DS in the world! That seems creepy and terribly Brave New World to me.

I thought the objective of the documentary was to challenge people's views that having a child with DS is a 'life sentence' and a terrible, sad thing to occur in the family and for the child. Clearly this message didn't fully make it.

My personal experience of a friend who has a child with DS is certainly not that of a 'life sentence' (which is a horrible phrase to use). She works and has a very typical, normal family life (no nannies or wealth by the way). Of course this won't be everyone's experience (with or without DS), but the programme just aimed to show the reality of many people's lives with a family member with DS and how typical they are and how it is not necessarily a 'life sentence'.

But whether it is a 'life sentence' or not is completely individual. Sally Phillips' son has a wonderful life and is very loved and well supported. Painting that image alone as what DS is like it as dangerous as not showing the positives as it is not giving the full picture. It needs balance. Retraining is needed with diagnosistic teams I think, although I have never met a bad diagnosistic team through my journey of three different teams.

Better earlier testing would not mean no DS people in the world.

I wish as well we could stop focusing on delightful babies and young children. Phillips' son was obviously heart meltingly adorable. But think what his life will be like as he tries to take his place in the adult world. When he wants to be a sexually active man. When he wants a family of his own. When, as with most people with Downs, his health deteriorates early....

Until we live in a society which fully supports people with disabilities (and their families) I don't think it is fair to condemn families for choosing not the place themselves in a situation where their lives will be made massively more difficult.

I think there should be less focus on what it is like to have a ds child and a lot more focus on reality of life for ds adults, when we live in a society with very little support for them. We have to be honest that not everyone with this condition will be able to live full, independant, healthy lives.

Being honest, abortion does not sit easily with me. I am pro choice because it is important that women have autonomy over their own bodies but nonetheless I am not comfortable with abortion under all circumstances. Having said that though, it is my view and I would never seek to legally impose that on another woman. I think it is wrong for SP to seek to impose her choice on other women whose lives are very different to hers.

"that a world without so-called "imperfect" people would be a poorer place."

Why would it be a poorer place? I'm not saying it wouldn't be. But why? And whose needs are we thinking about? Those of "perfect" people who talk about the lessons they learn from the "imperfect"? Or the "imperfect" who have to actually live the life...... (Please note the inverted commas around perfect and imperfect)

Bertrand I agree with the first part of your 10:24 post (with the addition of a 'not necessarily) However this,

But think what his life will be like as he tries to take his place in the adult world. When he wants to be a sexually active man. When he wants a family of his own. When, as with most people with Downs, his health deteriorates early....

I feel as a train of thought strays into very unsettling ground. Any apparently, 'normal' child with no discernible disabilities may develop a debilitating illness or injury which hugely affects later life. A child with Down's, comparitively, might have a very good quality of life. With the information, we have concerning the future of our children, at this level, you might as well be dousing over them or reading their palms to decide their future prospects!

Either way, 90% of diagnosed Down Syndrome fetuses are aborted. I would be very surprised if 90% of women chosing to abort are financially or logistically unable to care for a DS child. Many if not most will simply not want that for their child like the woman interviewed who had terminated due to DS. Thing is - that is their child. It's already happened.

But what are you proposing? That women are within their rights to abort a perfectly healthy foetus for whatever reason, but that they ought not to be able to make a similar choice if they are carrying a foetus that would go on to be a child with DS?

I think we're looking at this through entirely the wrong end of the telescope. Rather than focusing on what choices are available to women in pregnancy we should be looking at societies attitudes and support for disability which would in turn have an impact on the choices that women feel most suitable for them and their families.

I've not seen this documentary but I have no issue with the idea that there should we should have more information and exposure to the positive outcomes for many people with DS, but I think the issue is with the framing of it specifically within the context of the NIPT test and pregnancy choices.

But gruffalo, this thread has shown middle/old age with DS to be almost exclusively bleak and burdensome with no balance whatsoever representing the healthy and happy adults with DS who can even (god forbid) be life enhancing. Like the two over 40 year olds I know. Like I say - not balanced either.

Sorry gruffalo - that was meant for Bertrand. And plenty of people with DS have sex . Like I say, my godmother's daughter is happily married.

I am getting a little uncomfortable with your sweeping generalisations Bertrand - sounds like you don't know much about DS and are guilty of infantilising people with this condition.

There are a huge variety of outcomes - not all are great, not all are awful. But the that rings true for everyone.

Cedric- I could say that I am increasingly uncomfortable with your sweeping rose tinted spectacles generalisations. But I don't assume that somebody is ignorant just because they disagree with me.........

I can't say why Bertrand. It's just a feeling. The quest for perfection (in all aspects of life) doesn't sit well with me.

Please don't do the thing where you quote me again and insist I give you some sort of answer, I'm not in the mood for it today. And I'd be grateful if you don't take that to mean that I have a weak argument either! I'm not arguing, I am simply expressing my thoughts as informed by my feelings.

Most parents of adults with learning disabilites start planning for the future long in advance of old age. Of course there have been horrendous budget cuts to services but people with learning disabilites have the right to a good standard of living and decent accomodation appropriate to their needs.

Without outing myself I meet many parents of adults with disabilities though my job and most of their adult children are living in supported accomodation.

The descriptions used on this thread to deacribe people with DS as older, overweight, no longer cute, with a sexual appetite. So what?! People with learning disabilities are able to form relationships.

it appears that deciding to allow the choice to abort a disabled foetus equates on MN with 'you hate all disabled people and want them done away with'

I don't see any connection at all.

I doubt that anyone is pleased to have an abortion - but that is not the same as not regretting it. Sometimes it is a matter of the least worst choice. That is a matter for the individual concerned.

and that is the meaning of 'pro-choice'. No 'but' to follow. Who am I to make anyone else's decision on this?

It would have been great if Sally Phillips had made a programme examining the information and support women are given around diagnosis, and / or about the importance of support for families who have a DS child. A really good programme could have been made about the impact of austerity measures on the lives, wellbeing and independence of disabled people and carers.

This wasn't that though.

I feel as a train of thought strays into very unsettling ground. Any apparently, 'normal' child with no discernible disabilities may develop a debilitating illness or injury which hugely affects later life. A child with Down's, comparitively, might have a very good quality of life. With the information, we have concerning the future of our children, at this level, you might as well be dousing over them or reading their palms to decide their future prospects!

This is just saying that because we can't control everything, we should't try and control anything. The logical extension of that argument is saying that because some babies are stillborn or die soon after birth for reasons we can't predict, we shouldn't abort in cases of Edwards Syndrome which has a very high chance of stillbirth or death within a few days of birth.

Whatever way you look at it, a child diagnosed with DS has a much, much higher chance of severe health problems and poor life outcomes than a child born without DS. We can debate the exactly likelihood of these outcomes vs other more positive outcomes, but this is hardly palm reading.

If your perspective on life is to accept the cards you are dealt, whatever they are, then you wouldn't take the NIPT test in the first place, no-one is forcing it on anyone.

I apologize, bibbetybobbetyhat- we're obviously looking at this debate from very different points of view.

specialsubject as I and others have said earlier, this debate is not simple in terms of being 'pro-choice' or not.

A completely free choice involves being in a position where you are able to make informed decisions, otherwise the person that is making the decision can be deceived into making a decision they would have made differently with better information.

Early testing, whilst having less risks for the foetus and being at a point where a less complicated early termination is possible, means a making a choice based on less information (with regards to actual associated health complications of the foetus) than with later testing.

Equally perceptions of the quality of life individuals have, when living with disabilities, informs choice. Incorrect perceptions compromise being able to make an informed choice.

This is why the quality advice people are given, regarding their decision, is very pertinent regarding the freedom of choice they effectively have.

"A completely free choice involves being in a position where you are able to make informed decisions, otherwise the person that is making the decision can be deceived into making a decision they would have made differently with better information."

But how can you decide whether somebody is properly informed or not? Isn't that for the person concerned to decide? Once you start imposing external criteria you're restricting choice, surely?

Lame Bertrand. I've repeatedly said that sometimes outcomes can be shit. I'm trying to give some balance.

The minute someone say "1 am pro choice but....." they cease to be pro choice.

That is simply not true. It's the fallacy of the undistributed middle.

There are not simply two positions, pro-choice and anti-choice. You can be pro-choice but believe that abortion for reasons of sex selection should not be a choice offered to women. You can be pro-choice but believe that abortion beyond the current limit should not be a choice offered to women. I think those are currently majority positions.

You can be pro-choice but believe there are other factors to be weighed beyond the woman's own situation. You can be pro-choice but know this is something you would refuse for yourself.

This is a complex ethical issue. It can't be reduced to black and white, pro- and anti.

And you can be pro-choice and worry about what this whole debate reveals about our underlying to disability. That is my position.

I am pro choice but......

I think a lot of people are. ( & agree with niminypiminy )

We need a new name then. Pro choice has a very specific meaning. We need something that means in favour of allowing abortion in some circumstances.