To believe that Britain promotes eugenics.

[WriterofDreams]

I am aware this is going to be highly controversial and could upset some people but it's an issue that genuinely concerns me and I'm not just shit-stirring. I do expect to get flamed, but any reasonable argument or debate is very welcome.

I come from Ireland where abortion is illegal. I am fully aware that many Irish women go abroad for abortions so I'm not saying look how great we are we don't abort. However, until I moved to the UK I never heard of the practice of people testing their baby for anomalies and then aborting them if there was something wrong. It genuinely shocked me that a couple who tried to have a baby, went through the sometimes stressful process of ttc, got the longed-for bfp and then lived with the expectation of a baby for many weeks could then go and kill that baby because it had Down Syndrome or some other (non-lifethreatening) genetic condition. I have looked it up on a number of sites and extreme though it may appear I can't get past the feeling that this basically hidden eugenics.

What do you think?

Karen, I'm very, very sorry to hear you're going through this dreadful experience. You sound like a very brave and determined person, and I truly hope that your battle will ease and your precious son's birth will be a very positive experience.

Writer, I've been a lurker on this thread. I think your OP was deliberately inflammatory, but you've already been called on your flawed use of the term'eugenics'. Are there ever any circumstances where you think abortion is justifiable, or is your beef purely with those who terminate because of a foetal abnormality?

I'm also Irish, and quite astonished that you had never heard of women having screening, and choosing to terminate a pregnancy based on that result until you moved to the UK. I honestly don't know if you're truly that naive, or if this is all a massive disingenuous pile of pro-life polemicism.

I was always pro-choice, and then I had my precious DCs. I started to qualify my stance a bit - shocked a little by seemingly casual attitudes to abortion, once I'd had the experience of motherhood.

This Summer, I discovered that the baby I was carrying had Downs Syndrome. I'm 44, I had the amnio knowing that if the result was bad, I would terminate.

I did terminate, made all the worse for living in a country where we pretend this kind of thing doesn't happen. It involved lying and subterfuge, and utter, utter heartache. Thankfully I have been able to access counselling - there is no other outlet for my grief.

I don't regret in any way the termination, I know I made the right decision for me and my family. I just regret that any of this had to happen - the whole damn sadness of it all.

Correct me if I'm wrong, but are you pregnant with your first child? I find your position insufferably smug, and possibly untempered by the realities of what parenting involves.

You asked in your Op 'What do you think?'. What I think is that you should choose your words carefully and be very mindful of the feelings of the many women on this forum who have been to hell and back while you sat cocooned in expectant motherhood.

Do not dare tell me that my decision was based on anything other than what I knew was right for my life and my family.

Just to clarify, I now realise my 'qualified stance' on abortion was very hypocritical.

What the hell gives me the right to tell some woman that abortion was fine for me, given my circumstances, but totally wrong for her?

Olivia I appreciate your contribution and I will respond to your points but so far the thread has remained very stable and interesting due to the lack of personal attacks and I really like to keep it that way. I understand this is a very upsetting topic for you but to be fair I did preface with my post by making it clear that I understood people might find it upsetting. You might find my ideas naive or offensive but namecalling isn't the way to change people's minds.

Firstly I'm so sorry you had to go through what you did. I can only imagine the pain it caused you and I haven't ever suggested that people enter into such a decision lightly.

I haven't ever heard of people aborting for abnormalities in Ireland, but as I stated in my OP that's not because it doesn't happen, it's because culturally abortion isn't as acceptable as it is here and people don't talk about it.

My problem, as has been discussed extensively in this thread, is that in this country there is an assumption that if you are carrying a baby with abnormalities that you should abort and that if you don't you're somehow odd or misguided. I am also concerned about the fact that an abortion can be carried out up to term for a child with disabilities but only up to 24 weeks for a child who is not disabled. To me that signals an inherent discrimination and devalues the life of the disabled child.

By the way the idea that there is a eugenic motivation behind the abortion of disabled children isn't mine. It's been proposed by a number of researchers in the field of medical and legal ethics. There is a transcript here of a debate held in Oxford University in 1998 about the issue:
www.prochoiceforum.org.uk/aad3.php
Note that that is not a pro-life forum, nor was the debate held by a pro-life group.

I want to quote a passage from that debate that highlights my concerns:

Tests during pregnancy are offered to the majority of women. There is evidence from the National Childbirth Trust of strong pressures on parents to test and to terminate in the case of a positive result. Some of the pressures to abort are related to directiveness in counselling and prejudice on the part of some medical professionals. Others are indirect financial and cultural pressures. Many people who strongly support the existence of abortion services feel less sanguine about widespread attempts to screen out particular characteristics.

The message is that such a person is automatically undesirable, that life with that impairment is not worth living.

I want to note as well that the speaker I quoted (Anges Fletcher) is pro-choice but shares my concerns about the distinctions made between disabled and non-disabled children. I would like to quote her again:

So, it is time to nail my colours to the mast. What do I believe? I believe that a woman's right to choose to terminate a pregnancy or to continue it is absolute, and her reproductive choices should be supported whether or not she is disabled herself. Impairment is one of the grounds for termination, others are timing, finances, partner status, age, size of family and career. However choices about whether or not to parent a disabled child are not adequately supported and termination should not be advocated by medical professionals as a routine solution to any of these problems without adequate exploration of the alternatives. I believe that although a fetus has no rights in law, in a sense the current law can be said to discriminate against the fetus suspected of having an impairment. A fetus whose actual or potential impairment status is unknown becomes a person at 24 weeks and cannot therefore be terminated unless this is warranted by considerable physical risk to its mother. The fetus thought to be impaired can be terminated at any point up to term even if it is capable of being born alive.

Sorry I should have clarified that Agnes Fletcher works in disability rights for the British government. A short cv for her:

Agnes Fletcher

Since becoming a consultant in 2007, Agnes has worked for public and voluntary sector clients, providing strategic advice, consultancy and training on implementation of equality legislation and on communications. Before that she was Director of Policy and Communications at the Disability Rights Commission (DRC), responsible for managing its research, policy and communications functions. Agnes has experience of communicating with diverse groups of disabled people, including those who do not identify themselves as disabled. She also has knowledge of inclusive communications, disability policy and mental health issues, having been lead officer for the DRC?s Mental Health Action Group. Agnes is also a member of the cross-government Disability Equality Delivery Board and a trustee of RADAR and Shape Arts.

From the following website: www.dwp.gov.uk/about-dwp/public-bodies/dwp-sponsored-public-bodies/disability-employment-advisory/meet-the-committee/

I appreciate your thoughtful posts, WoD. I have to say that A. Fletcher's statements, as quoted by you, only reinforce my support for unconditional choice to term, by law. I have heard what people have said, here and elsewhere, about undue pressure to terminate a 'disabled' foetus. I hope - and want to believe - this is mostly a matter of perception by distressed parents at a very traumatic time. Removing all limits would, however, remove all questions of discrimination in respect of this issue.

One of the really important things about the UK is that most people really fundamentally believe that abortion is a personal choice. Not something for the state to be involved in and not a political issue. The trouble is that when any potential change is ever suggested the anti-abortionists get involved and it all gets very messy, because some people seem to think that their personal morality is more important that other people's lives.

I agree that the current legal stance is discriminatory but practical, however I wouldn't want it changed, because in practice late abortion is extremely uncommon and is not in any case predominantly about disability. If there was to be a change I would rather it was moved to term rather than backwards, as that would take choice away from people in fairly desperate situations. Last time the limits were debated (not so long ago) the scientific evidence was that there had been no change in terms of viability since the last change (in 1990). Few babies born at 24 weeks survive (most after fairly heroic care and many with significant impairments), and very very few born before then.

I do think that there should be much much better support for children and adults with disabilities and their families, and that services for genetic counseling and for supporting those making very very difficult choices should be much much better. And that tests should be offered as early as possible but also that abortion services should be better funded too (so that women do not end up having late abortions because of difficulties with access).

For me personally I chose not to have any tests when I had my two, but if I had decided to have more children after that I would have taken a very different approach, as by then it had become very clear that my niece who has DS was very very disabled (although quite healthy) and it changed my perspective on something I previously thought of as really not a big deal (excluding heart defects etc). In a way that reinforced my choice not to have any more children.

It's also interesting to note that there are some groups of people with disabilities who are pro testing and abortion, so as with most difficult issues, it's not that clear cut.

2shoes, thanksxx It's not something I am proud of and reluctantly I think OP has a point.

ItsGhoulAgain Sat 30-Oct-10 02:48:25

I have heard what people have said, here and elsewhere, about undue pressure to terminate a 'disabled' foetus. I hope - and want to believe - this is mostly a matter of perception by distressed parents at a very traumatic time. Removing all limits would, however, remove all questions of discrimination in respect of this issue.

It's not perception by distressed parents: I worked in fetal medicine for years. There was undoubtably a bias towards terminating if abnormality was found. The consultants advising the women varied in their approach and some were much more even in disclosing predictions of quality of life to expectant parents. I was appalled at the information that was given at times. Occasionally I felt the woman was being relieved of the burden of guilt about making that decision but towards the end I was more commonly convinced that there was a policy to terminate all babies with possible abnormalities rather than explore whether this was actually what was good for the family.

The reason we have nuchal screening as a NHS screening programme is a financial one. Babies/children and adults with SN cost the state more to look after. That is the DoH's reason for paying for an expensive screening programme.

We have a massive culture of screening in pregnancy. The abnormality scan at 18-20 weeks is often the point when issues are discovered and consequently further testing and appts etc may push that pregnancy past 24 week before a decision is reached to terminate.

Most women have screening without a full understanding of the consequences of knowledge after the scan. I saw many women come in declaring one viewpoint (I won't terminate) and change their mind when presented with bold facts.

The way those facts are presented needs to be explored. This group has done a lot of work in this area ARC

There were far more terminations of healthy babies than other when I worked and I think this is a bigger issue than worrying over terminations when a problem has been found.

There is also a massive difference between anencephaly (incompatible with life) and other abnormalities (6 toes perhaps?) What is deemed a suitable reason to terminate varies between people but is often unexplored at that point of decision and it is a highly emotive time.

I would like to see more dispassionate counselling and less assumption than termination is always the answer.

sorry you can't use money and what it cost to look after a disabled person as an excuse.
if this is the case, then why is nothing done about CP? quite often it is one of the most avoidable disabilities, yet nothing is done to stop babies being starved of oxygen at birth.
people happily have test after test, but they don't even consider that fact that it only takes one ill trained midwife, or one bad Doctor and you can end up with a baby that is often much more disabled that if the had DS.
but it is never mentioned, there are never campaigns. people just accept it, but surely in this day and age this shouldn't still be happening.

I also wonder how many mistakes are made, how many people are told their baby has DS, and terminate, when it doesn't, would be interested in Stats on that.

I have 'personal experience' of this subject aside of my work experience.

There is a massive difference (at the risk of repeating myself)in the outcomes of babies found to have any problem. Often that prediction is unclear and thus decisions are made based on a likelihood/personal experience/assumptions/stereotypying of SN children.

You do need to consider your own viewpoint and abilities and also the consequence of your decision.

SN children add so much to many people's lives. Terminating is almost always a distressing experience however it can be the right decision. Both parties here will feel their decsion invalidated by someone making the opposite decision. Each situation is VERY unique and you need the right decision for you and to be supported........ which means supporting others making their decsion.

Answering the OP- it's not eugenics. It's financial which is not better

2shoes- I'm not using money as an excuse :) I'm just stating the DOH's position

All health provision decisions are made based on financial cost vs savings.

(Not saying it's right at all)

I totally agree with the point you make about CP

Oliviacrumble, I am sorry to hear about your situation.

However, I don't think that the OP's position with reference to pushing abortion where disability is identified really relates to your decision made for the good of your family.

I think it is outrageous that in Ireland, we force women to travel to England rather than accept that some families will decide to terminate and make that decision easier on them by providing appropriate facilities for them, however I don't agree with termination being seen as a "routine solution" either. There should be a middle ground.

I know a woman who chose to have her baby with DS (in Ireland) who was repeatedly told that she could "get the boat" by family members and her doctor and who has been asked several times since having her baby why she didn't. This invalidates and judges her decision as much as any staunch pro-life stance. Two wrongs don't make a right..

In the same way, personally I would find it very difficult to abort a disabled foetus but it doesn't mean that I think you made a wrong or immoral decision for you in your circumstances.

In the end of the day, we are all pro-life. No one wants to be in a situation where they terminate a pregnancy, whether it is wanted or unwanted, typical or disabled: being pro-choice does not equate to being pro-death. I hope most people realise and appreciate that terminating a disabled foetus is usually a tragic event for the mother (and father).

Excellent post arses :)

VictoriasLittleKnownSecret I absolutely agree - I also worked in fetal medicine.

What women/families do not understand is that the point of fetal medicine is the earliest possible detection of abnormalities so that those pregnancies can been terminated asap - with the lowest cost to the health service and, they hope, the least physically & mentally traumatic outcome for the woman involved (i.e. first/early second trimester termination rather than a later one), so that she can go on to attempt another pregnancy with a better outcome.

The nuchal test was was devised with the only objective of bringing forward terminations into the first trimester.

Harsh as it might sound that is the reality.

Writer, I realise that my post is very emotional. That's because I'm going through a lot of pain right now over my own experience, and your cool and dispassionate tone, while no doubt helpful to the debate, jars greatly with me.

Because I live in a country where this is never spoken of, I have had to go through even more trauma than if abortion were readily available.

I got no help or support, and if you read Irish parenting forums, you would be forgiven for assuming that no one in Ireland would terminate for abnormalities.

Ireland is a scary place to be in, when you're in my situation.

I agree that choice is key, and would like to feel that every woman would be given the space to exercise her wishes.

I rest my case, as no one has commented on my post

I commented on the financial argument as I thought it was meant for me.

Screening for abnormality in any area is targeted and planned for a group where it can offer a 'solution'. It is almost always driven by a financial argument. Treating cancer in the early stages is cheaper than treating advanced cancer for example.

You cannot screen for CP as it is an event which happens due to a number of causes.

Believe me if the DoH could tackle it with screening they would!

It is tackled in a number of policies and guidelines which are designed to give a safe birth. Birth is fairly complex though involving parental choice, midwifery care, medical intervention and misinformation/communication.

It's a really good point 2shoes -- I know of 2 instances where a baby was diagnosed with a condition 'incompatible with life' where the mothers ignored the offer to have a later termination, had the baby and they are fine. Or rather, as fine as any other baby. Who knows about milestones at a young age, but the predicted disability didn't materialize.

most of the cases I know were caused by bad actions at birth, so completely avoidable.
yet where is the out cry, where is the campaigning, it is just left, so it carries on, think how much a person with a severe disability costs(seeing as in the end it is all down to money) yet nothing has changed.
anyone can give birth today and end up with a severely disabled baby. all the tests in the world have not stopped that

ilovemydogandMrObama I wonder how many people have taken the other option when all could have been fine.

Interesting OP. Yes I do think that culturally here you are expected to terminate and it's seen as the 'selfless' thing to do. I have a friend who was called selfish for keeping her son with DS. She incidentally had to repeatedly stand up to medical staff who tried to persuade her into a termination and seemed to think she was naive to not want one. It's so culturally expected to have a termination that I have had people tell me about terminations for DS in front of DS1 which I find crass beyond belief to be honest.

I am pro-choice because I believe access to safe termination is one of the signs of a civilised society but I think it's a shame that there is such an expectation of termination for pretty much any disability. I'm not sure it always helps people make the right choice for them (although I'm aware that sounds terribly smug- but I do know people who have had terminations who seem to be knocked sideways by them for a very long time and I do get left wondering whether it was the right choice for them. I know other people who very clearly have no regrets and move on and presumably for them the choice was correct. I also know many people who have unexpectedly had children with disabilities and the vast majority adjust and although life is harder they're often happier- that's something people never talk about).

Luckily there is no test for my son's condition (severe autism, severe learning disabilities). If there had been we would certainly had been expected to have a termination by many. My son will need 24 hour care for the rest of his life and in my experience the medical profession is rather crap with learning disabilities.

I agree with 2shoes that money isn't all the relevant. It's actually not that difficult to make the lives of people like ds1 better (indeed it's not that difficult to give him an excellent quality of life). He has no health needs - but he has to be seen as someone worth providing for, as someone who is worth valuing. Ironically inclusion has made things much harder on that front because he needs specialist schemes and that's a dirty word these days.

Has he made our lives harder? Yes, absolutely. Has he made our lives better? Yes absolutely. Has he filtered out the ghastly people that were cluttering up our loves and left us with lovely people? Yes absolutely. Has he made our lives more fun? Yes absolutely. Many people seem to think I'm in denial with that one, but in our case it's true. We have 2 NT kids as well so I know the difference between life with NT kids and with significant SN. I also know that life without ds1 would have been the absolutely wrong choice for us and I'm relieved I was never given the option to have potentially made the biggest mistake of my life. I don't think I would have, I think I would have made the correct decision for our family, but I think there would have been a lot of pressure to terminate and I'm not convinced I wouldn't have been persuaded because on the surface our life probably does look difficult. Others don't experience the amazingly good bits though and you can't really tell people about that.

Sorry that's a bit off topic, but I'm interested in how learning disabilities in particular are viewed.

Ghoul when both a consultant who has worked in disability rights for many years (Anges Fletcher) and a person who has worked in foetal medicine (Victoria) state that the pressure to abort comes from the medical profession, that makes it very unlikely that it is just the perception of parents.

I don't know about you, but I'd be very uncomfortable if a young pregnant girl was repeatedly offered abortion or pressured into abortion by health care professionals because of her age. I'm sure even the staunchest pro-choicers would agree that undue pressure by the medical system is not appropriate given that many women are in a vulnerable position while pregnant and thus are more open to coercion. Yet this seems to happen routinely where disability is involved.

I totally understand what you're saying about my tone Olivia and I can see that because of your situation it seems hurtful. However, because of the stance I have taken it is necessary for me to stick to unemotive language. Otherwise a thread like this can quickly descend into a chaotic slanging match. My tone doesn't imply that I don't care, it's there out of necessity.

2shoes "how many people are told their baby has DS, and terminate, when it doesn't, would be interested in Stats on that."

I would think this is very unlikely. My understanding is that an Amnio/CVS tests the Chromosomes of the baby and can tell a mother if there is one too many.

A Nuchal scan very clearly can only give a risk factor and is not a conclusive test. Aborting after just a Nuchal scan is I think very rare. However I don't know how stats like this would be collected as once the terminateion has taken place do they then test the foetus?

oliviacrumble thank you so much for sharing your experience and I am so sorry to hear of all you have been through.

I am not sure if WriterofDreams answered your question "Are there ever any circumstances where you think abortion is justifiable, or is your beef purely with those who terminate because of a foetal abnormality?"

she has already said that she supports abortion in the following circumstances

"1) The baby won't survive at all outside the womb

2)The woman has been raped

3. The woman will be seriously injured or die due to the pregnancy (I don't include threats of suicide in this as I have been suicidal myself and I know it is not a terminal condition)"

Saintly you've highlighted one of my main concerns, which is that disability is seen to be unacceptable, not just unfortunate. Of course everyone would choose to have a child without disabilities if they could, but there's a sense that if the child does have disabilities then there's no point in continuing with the pregnancy. Partially I think this attitude leads to a general devaluing of people with disabilities in society as it leads to the perception that Agnes Fletcher found, that their "lives are not worth living."