Ignorant Guardian article.

[eidsvold]

Anyone else read the 'confessional' in the guardian magazine today???? My dh saw it before I did and suprisingly he felt compelled to write to them to provide a more positive view.

Basically the story is about a woman who decided to terminate her pregnancy as the baby was shown to have downs ( amnio) and a heart defect. So you can imagine how that went over in our household. Some of the info told to her by medical professionals was appalling in terms of ignorant and ill informed. Whilst I want to feel sorry for the woman - I can't.

I am in the process of reworking our family story to send to the Guardian in the hope they will think about what they have written and be prepared to provide a more balanced view.

Even sadder to note that next week is Down syndrome awareness week - Good onthe guardian for helping to break down stereotypes and stop misinformation!!!!(NOT)

Feel free to join us in writing in to complain - if you get to read it.

I haven't read the whole of the other thread on this topic so I hope I'm not repeating things that have been said elsewhere. I too found the article very moving, again mainly because I am in that very hormonal pregnancy state and the issues raised were very close to what we had recently been through, though I am very grateful that I didn't have to come face any of the decisions that this lady and her husband did. The whole screening and testing thing does sometimes strike me as being a little too biassed. Just because the medical profession have developed a screen and test for Down's Syndrome this one particular disability seems to have become demonised as the worst thing that could happen to your child. There are many more disabilities that I believe would have a far greater effect on the child and family than DS, but because they can't be tested for, or occur during birth or following illness or accident the possibility of not having a child with them is not an option. I think there are some parallels here with the imunisation programs whereby as soon as a new vaccine is developed the disease it is meant to prevent suddenly becomes a killer. I wonder which syndrome or disease will be next on the list and it would be interesting to see how opinion about that particular one changes before testing is available and after.

eidsvold, I read it last night. I thought it was really awful and I'm not surprised you felt offended, but that she came across as immature, eg, "Now we have joined the grown ups," when in fact she never seriously took time to consider whether she and her husband were capable of taking on the task of parents in raising that baby. I think it shows that awareness of disability discrimination still has far to go, compared with awareness of sexism and racism. For example, suppose someone had had IVF and it turned out the baby was of a different race but able-bodied, I don't think she would be encouraged to write that type of article about how she terminated her pregnancy.

Bells2: I used the taxpayer criteria from this standpoint: it does not pay society to remove the option (note I said "option", not "obligation"!) from women to terminate a Downs child. Therefore, "society" and public health policy would not support a ban on the cost-benefit basis.

I used the term "burden" exactly once, in the context of how Downs is "viewed" by most individuals and society, and whether that "view" was likely to make a campaign to disallow abortion on the grounds of Downs syndrome.

Why can't anybody be bothered to read EXACTLY what I wrote???????? In context? Why do people have to turn into bullies, because they're so hyper-sensitive? Do you Thomcat, Eidsvold & Jimjams, etc. realise that you have just alienated someone who DOESN't HAVE the prejudices you accused me of, by being people who insist on attributing opinions to me I never said, slagging me off because I dare to say things you don't like? If you treat me this way, how in the world are you ever going to effect change in the people who genuinely have the prejudices you so despair of?

If I leave Mumsnet, which I may as well because I obviously have the wrong "sort of attitude" and persist in being "ignorant" -- then the bullies attitude is that leaving proves I was obviously wrong all along, "spouting rubbish" and living in the "dark ages". Instead of being someone sensible who simply doesn't want to hang out with such a NASTY crowd.

Jimjams, I can see why to read about 'my disgusting body' must seem like a kick in the teeth to someone with a much loved child with DS. I also tend to agree that she didn't come across very sympathetically - but I suspect she also knew that. A lot of the article seemed like an attempt to address the fact that she didn't like herself very much for what she had done, and in that sense I think it probably expressed what a lot of people feel in that situation. I think we often horrify ourselves by how we behave and what we think and feel in our darkest hours. I really can understand why that word, which certainly jumped out of the article at most of us, was ill-judged if she considered the effect it would have on others. But, I think it was not (just?) that she considered the disability 'disgusting' but that she felt disgusted with her body for letting her down. I have heard women with cancer - eg breast cancer say they thought their body was disgusting because it had 'let them down' - they didn't think other women with cancer were disgusting, it was about themselves. I don't think they are equating cancer with DS, by the way, just that when your body 'fails' you like this it can set up horrible feelings about your body. But I can also see that in context of what from what you and others say is clearly a hostile and often ignorant society I think the word/s have extra weight. I personally (as I have said) would have edited the feature slighly differently. However, it was certainly a powerful albeit rather unformed and self-deluding piece - but also I think a true reflection of one woman's overwhelming feelings at the time - even though they weren't very nice.

outofpractise, I disagree. I think they would print it. In fact, I do believe that in every case of embryo/sperm mixup that has become known early in pregnancy, the women has had an abortion. In the case of the mixed race children that were recently born after the wrong sperm and egg were combined during IVF, the woman had no idea there had been a mixup until her children were born. She very much loves her children now there are here, but in all (?) previous cases the women have terminated the pregnancy. This has not been on grounds of race though, more that the children weren't their husband's. The race thing only made it obvious.

zebra - chill. Read my last message. It took a long time to get there- partly becuase I was trying to work out why the article was offensive to me. Maybe we've been talking at cross-purposes. I for one don't think termination on the grounds of disability should be outlawed. You don't think disability if digusting -fine. Maybe we've both worded things badly. It's not my intention to bully anyone.

And yes on behalf of my son I am over-sensitive. Aren't we all over-sensitive when it comes to our children? The difference is you don't get "looks" every time you step out of the door, I do.

My dislike of the article is becuase I think it reflects society's view. Maybe it's not something that people like to admit to themseleves- and maybe it's not your view- but it is society's.

So if you feel you've been bullied I apologise. What you said reflected something that I do feel over-sensitive about. If I got your representation of society mixed up with your own personal opinion then I apologise for that.

If you read my last message I hope you will see I'm not trying to bully anyone, I'm just trying to explain what it is like to love a child that many people find disgusting.

We'll have to agree to disagree on the financial side Zebra. In Britain at least I personally don't think the ability of an afflicted person to contribute financially to society is generally considered as a relevant factor in these sorts of issues. I would have thought most people would not want the right to terminate removed simply because of the potential implications as far as womens rights are concerned.

Aloha- I do agree with all of that. I know I hold certain deep predjudices that horrify me- and when I am confronted with them I disgust myself. And yes you are right about the cancer I have seen that written as well.

I think if I didn't have a disabled child would have read the piece, and interpreted it in exactly the way you have. The hint that she found the child disgusting (and I do realise she didn't actually say that) was too much for me as it's what I see on so many faces. I am bitter about the way society treats children like DS1, and so to see that article in print was almost a reminder that it is socially acceptable to see certain conditions as being not worth a chance at life.

I agree it was an incredibly powerful piece. And even though I have to say I did not like the woman one little bit, and wouldn't want to be in the same room with her, I did feel that she must have gone through an absolutely horrendous time, and of course I was touched by that.

I strongly suspect that had she been totally honest she would have said something like this: - When I dreamed about my child it was perfect, highly intelligent, very attractive, it would sail through school and university and then find a great career they love and excel at. I want them to be destined for great things, to have wonderful love affairs and to produce grandchildren for me and that we would become great friends in adulthood enjoying each other's company but also free to be independent of each other. I want to be with my husband in 20 years time, driving round America, not be a carer. Discovering my child had DS seemed to me to shatter all my dreams. I had visions of myself as an old woman still living with my disabled child, and pitied and marginalised by everyone. I don't think I'm strong enough for this. I want my dream back. I am appalled at myself for even thinking this but I do and I don't want this other life I can suddenly see in front of me. I want to think I am doing this for the sake of my unborn child to prevent their suffering in this world, but I'm not. I'm doing it for me and that's the worst thing about this entire horrific business.' I really do think that would be the more honest version, but perhaps too much for a person to face up to shortly after a termination? I suspect this, because I strongly suspect those would something like my own feelings in her situation. Hence my desire for CVS if I got pregnant again. I have to admit I was secretly pretty terrified that ds would have Down Syndrome (lot of time to worry being stuck in hospital for weeks and weeks), and so were most of my friends. I truly, however, don't think people with Downs are lesser human beings. It's hard to explain that dichotomy. Anyway, that's enough of my soul-searching!

What a thread..
I must say that I agree everybody is free to choose if they want to go ahead or not with their pg when expecting a DS baby, and honestly I wouldn't know how I would feel myself if I had one (I am expecting my first baby any time now)

My dh and I refused the amnio because it was risky for the baby and because we thought that it would only exclude a couple of disabilities, but there are so many other things that could go wrong, so we are open to anything.

As for the "burden to tax payer" bit, I have my view:

You may have a perfectly healthy and fit baby and he/she can get sick and disable at any time in their lives and then become a "burden" to tax payers.
Or, they can become drug addicts and live off benefits when they are teen agers!
What should you do then? Miscarry anyway so you don't burden society with a potential non tax payer???
That is a ridiculous comment!

To be fair, I think Zebra was trying to say that one of the reasons abortion on the grounds of a foetus having DS would never be illegal is because DS is regarded by society (by which I think she means gvmts, civil servants, chancellors judges etc) as a 'burden on society' because they cost society money for care and don't contribute money back. BUT she says that isn't what she thinks herself. Personally, I think it will never be illegal because so many individual men and women do not wish to be forced to carry DS children against their will (for whatever reasons), and it would be a total vote loser (and because it wouldn't make sense to 99% of people to have legal abortion except in cases of DS). But that's another issue.

Yes - possibly Aloha. Although her use of the word disgusting does make wonder whether there was a more primitive reaction going on.

And yes you've addressed another aspect of the article. Had the termination been carried out earlier following CVS I don't think I would have had such a problem with it. (I do recognise this may have been due to NHS practices in her area). It was the fact that she gave birth at 23 weeks to kill her child - either because she was thinking the way you described, or because of a more primitive instinct. The fact that she would do something as horrific as that in order to avoid DS made me just not like her (sorry). Had she done it to avoid trisomy 13 or trisomy 18 or something as serious as that then I would have felt great sympathy for her. To have put herself through that experience to avoid DS must mean that she really really didn't want a DS child- and I guess I'm suspicious of her reasoning. Would you do that because your life plan had changed? Or would you only do it becuase of a deep sense of disgust? I'm not sure.

So what's the answer to avoid this sort of situation? Earlier screening- yes, but maybe also counselling before screening. Earlier booking in visits- 8 weeks- when the screening and possible results are discussed? I suppose ideaaly peope would think hard before getting pregnant. If they knew they absolutely couldn't have a Down's child then they could be screened at 11 weeks with a nuchal scan- CVS could then be carried out as early as possible and any termination take place as early as possible. I suppose I'm horrified by a medical service that thinks it is OK to scan someone at 20 weeks- carry out an amnio and then just expect them to go through with a termination at 23 week. We have the techniques available now to avoid this situation (for DS anyway) - shouldn't we be ensuring early screening is available everywhere?

Just to add aloha- I dont think anyone ever was saying termination should be illegal in the case of DS. Trying to outlaw legal termination (for whatever reason) doesn't make any sort of sense at all. I think that was a misunderstanding.

On the other thread there was a piece about some DS adults who invaded a conference about termination in the case of DS- but the man who was running the conference did believe that DS should be terminated as it was a cheaper option (hence they found his views a little repulsive).

I agree she didn't come out of the article as a likeable person, but it's hard to be lovely in extremis, I suppose. Reading between the lines it seems that neither Ruth Picardie or John Diamond were particularly lovely as they were dying (and both were fantastically engaging people). I agree that late abortions are horrific, and I had to admit, I didn't realise how horrific until I read this. The account of feeling the baby kick as they left hospital knowing she'd already started the killing process was just nightmarish. It all seemed so very late and I agree that earlier screening at least for Downs would seem a wise thing. Last time time round I had the nuchal fold test at Kings and trusted it but again this was very early, before I really thought of my baby as a child and certainly long before any kicking. The abortion process seemed utterly barbaric both for the woman and the unborn baby. I think the feature would have been more interesting had the editor forced her to think about her feelings a bit more and articulate them more clearly. But the feature also made clear than this wasn't her particular strength and possible the editor felt unable to push the issue with someone who was clearly in a lot of emotional turmoil. I truly wish people didn't find your children horrible. That's very sad. Much worse, IMO, than choosing not to have children for any reason.

I agree the money issue has been a big red herring. I don't actually think anyone at all thinks this is about money.
And yes, I do think there is a widespread horror of the 'abnormal' in society. And some (probably small) part of it I think must be a primitive reflex. Animals also reject on those grounds. Of course, we are not animals and we can learn not to think like that. Most revulsion is learned, I would guess. Funnily enough, one of my friends told me, rather shamefacedly, while she was pg that she would have terminated for Downs. She has recently found a nursery for her daughter and told me how delighted she was that the nursery was very inclusive, and had children of all races and some with disabilities including Downs. She thought it was great that her daughter would mix with them from an early age and so not, hopefully, grow up with prejudices. So it is possible to hold those two seemingly contradictory feelings at the same time.

It's funny isn't it aloha- for me the cut off point is kicking as well. When I thought of what she was doing my first thought was that the baby would be kicking.

I do now see the reason for inclusion (done properly and funded properly) and I hope it does remove that primitive fear. I suspect it is an animal instinct which has been reinforced by society. I guess that's why that article isn't viewed as being particularly helpful- it just panders to predjudice. I can see what you are saying about her not being in any state to face up to what she had done though.

The reason that people find our children horrible though is because they carry so many misconceptions. It's the image that the condition produces that makes them horrible- not how they actually are. Thumbs up to inclusion again I guess.

Personally, when I saw a perfect baby on the nuchal scan, that was pretty much it for me and DH. I'm really not sure what would have happened if we'd got a bad result.

Can some clarify what the cut off date is for ?ordinary? abortions and is it much earlier than problem pregnancies?

I think what zebra is saying is that at the end of the day we (ie health policy makers) use financial criteria to judge whether a person?s quality of life will be adequate or not. Horrible and cold as it seems that is one criterion. Also other factors such as being able to support the child emotionally and physically and so on that have been discussed here (sorry I?ve not had time to follow the thread closely).

The thing is all these considerations are taken into account if you are pregnant with a ?normal? baby and one can just walk into the doctors office and say ?I am 42, this baby was an accident, we have 3 children already and I wouldn?t be able to cope, we can?t afford it ... blah blah....? And bingo baby is terminated. As far as I can tell it is only a matter of gestational age as to when ?normal? baby A is terminated rather than baby B with DS or other disability. It all seems grisly when laid out in bare facts like that. And in fact it seems to say its alright to terminate a baby much later on because it is disabled. A baby is a baby and surely it should be wrong to terminate at any given gestational age. I know there are problems with testing but haviang read these threads I have doubts about those tests.

Anyway to go back to zebra. I think she is just putting forward what the argument is from the point of view of policy makers and the individual parent who doesn?t want to have a disabled baby. I don?t think this is HER view as such. Is that right zebra?

However I do disagree about campaigning if the rules on termination have become outdated and inapplicable. Medical advances change things and mean that these days a child with a heart condition for instance has a good chance. Therefore I think it is wrong to terminate that child. I actually only believe in very very early abortion in any case. But don?t want to start a debate on that. The thing is we aren?t going to change people?s attitudes on terminating disabled babies until we change people?s attitudes about terminating ?normal? babies. But I think it is very very wrong to allow late terminations because a child is disabled. It just seems like a cop out.

Eulalia- I think (not sure though) the cut off for ordinary abortions is 24 weeks- recently put back from 26- although of course some babies born at 24 weeks do survive. I think someone already said you can terminate at any time for a disability (I don't know "how" disabled the child would have to be though). Whilst I can see this as being sensible for something like anancephaly, or trisomy 13 or trisomy 18 - which are incompatible with life- I think we're on shaky moral ground when it comes to something like DS (and is that true for Down's? Could you terminate at say 30 weeks for Down's? I have no idea of the law- it doesn't bear thinking about). Maybe if that is allowed (I can't see that it would happen very often though even if it was) then that would be the time to ask why these babies aren't being born and then released for adoption if the mother really couldn't cope.

Mind you from a legal pov the foetus has no human rights (they only come after birth) so in considering whether a late termination (after 24 weeks-) should be allowed the rights of the foetus aren't going to come into it- only the rights of the Mother. So if a termination for DS is allowed after 24 weeks it's becasue the mother's right is being recognised. It's hard to know where to draw the line though isn't it. Maybe incompatability with life should be the deciding factor?

I don't think the issue we had with the article though was to do with termination. It was just that it was a step backwards in terms of representation of DS.

just looked into legal cut-offs - I was really surprised to see that termination for any reason is legal up to 24 weeks and up to 40 weeks if the baby has an abnormality. Though apparently in reality it is virtually impossible to find a doctor who is prepared to perform a termination for no particular reason after 12-16 weeks.
I do think that these time limits need to be reviewed, particularly as there have been so many medical advances in the treatment of premature babies and it just doesn't add up anymore.
I mentioned on the other thread that a few years ago in Germany a little boy with Down's Syndrome survived his own 'termination' at 24 weeks or so. He was left to die but after 10 hours without medical care the doctors decided to take life-saving measures. He has severe cerebral palsy etc as a result of his prematurity but has been adopted by a loving family. If you speak German you can read about it all here: www.tim-lebt.de
(and yes this really is a true story, it was a big thing in the German papers at the time and you still see occasional updates on how Tim is doing).

oh, and the papers found out about it when the parents tried to sue the hospital because no one had informed them of the risk that their baby might survive.

You answered a question I had 2under2- what happens if a baby survives their own termintion? Aren't these late terminations a variation on leaving a child outside to die (whether for disability or for being a girl or whatever?) Surely it is time to review this?

warning - you will find this upsetting - the answer to your question is that the baby is killed before it is delivered, if it is of a gestational age where it might show signs of life after delivery.

The legal cut-off for terminations WAS reviewed in the light of advances in survival of very preterm infants - and the cut-off for most terminations (those done on 'social grounds' ) was reduced from 28 weeks to 24 weeks. At the same time the limit was technically abolished for cases on 'medical' grounds - this includes where the mother is ill as well as where the baby has a disability. In practice it is very very rare for a termination to be undertaken after 24 weeks.

Not going to enter into the exchange of views here, just supplying some information...

Thanks Elliot. Actually I think that is more humane than delivering and just waiting for the baby to die.

Another question. Does the late termination option only cover certain disabilities? So for example could someome terminate because of say talipes (club foot) or is it only for certain conditions? Again I'm guessing this sort of situation would be incredibly rare. I'm just trying to get a handle on what is officially sanctioned as being ok iywim.

ZEBRA - LOOK I FEEL I SHOULD DEFEND MYSELF A BIT HRE, AND CLEAR THINGS UP A BIT. I'M SURE YOU'RE USUALLY A GREAT PERSON, AND MOTHER, BUT BELOW ARE THE THINGS i TOOK OFFENCE TO. YOU WROTE THEM IN A SPECIAL NEEDS SECTION WHERE MOST PEOPLE WHO POST THERE HAPPEN TO HAVE CHILDREN WHO HAVE SPECIAL NEEDS IN ONE FORM OR ANOTHER.
I DON'T THINK I BULLIED YOU, SORRY IF YOU THOUGHT THAT. I JUST FOUND YOUR TONE HARSH AND YOU DIDN'T EVER APOLOGISE FOR SOMETHIG YOU SAID WHICH HURT MINE, AND OTHER'S FEELINGS. IT'S A SENSITIVE ISSUE AND WHEN A MOTHER COMES ACROSS COMMENTS LIKE THE ONES BELOW THEY GET DEFENSIVE. I'M GUILTY OF BEING DEFENSIVE OVER MY DAUGHTER.
I JUST THINK YOU COULD HAVE BEEN A LITTLE MORE SENSITIVE IN THE WAY YOU WORDED THINGS, THAT'S ALL.

zebra said; I don't see how any of you can argue that another person should be willing to take on a severely disabled child. You have no right to impose that on others.
I WAS UPSET BY YOU CALLING PEOPLE WITH DS SEVERLEY DISABLED, NOTHING ELSE, JUST THAT

Zebra; The child has problems similar to Downs. Lovely girl & I often think 'Could I "terminate" her?' But when I see how stressed out her mother is with her condition & problems that come up, the choice seems easier.
I WAS UPSET THAT YOU CAN LOOK AT THIS LOVELY GIRL AND THINK THAT, ORTEN, ABOUT HER. JUST A SENSITIVE SOUL ME!

I would prefer to not have a baby for life; having Downs syndrome is a lot like being a baby for life. That to me is severe disability.AGAIN, ITHINK IT'S OBVIOS WHY THAT UPSET ME

I don't want to argue whether Downs is "severe" or not; in most people's eyes, it is severe. If some of you want to campaign that termination on the grounds of Downs syndrome is invalid, and should be illegal, then I will sit back and watch you fail.
I JUST FIND YOUR TONE SO HARSH AND BLUNT. WE'RE TALKING ABOUT OUR CHILDREN HERE, MY BABY, HOW DO YOU EXPECT ME NOT TO FEEL A BIT SENSITIVE ANF HURT BY ALL THIS????

A campaign would fail because (unlike most of the thread participants here?) most parents & medical professionals view Downs as a severe disability, and an immense burden on individuals and society. If abortion is tolerated at all, Downs is one such condition where termination will be continue to be condoned. IMMENSE BURDEN - THIS WAS LIKE PUNCHING ME IN THE FACE, HOW HURTFIL, AGAIN YOU;RE TALKING ABOUT MY PERFECT, HAPPY, HALTHY LITTLE GIRL WHO HAPPENS TO HAVE DS

I DON'T WANT TO GET INTO A SLANGING MATCH WITH YOU I JUST WANTED TO MAKE YOU UNDERSTAND WHERE AND HOW YOU UPSET ME. THAT'S IT. i'M SORRY YOU FEEL YOU WANT TO LEAVE MUMSNET NOW. I HOPE YOU DON'T AND I HOPE YOU CAN UNDERSTAND, JUST A BIT, WHERE I AM COMING FROM ONCE YOU'VE READ THIS. I'M SORRY IF I WASN'T NICE, I DON'T THINK I WAS A BULLY ATA LL TO BE HONEST, BUT I WAS UPSET, AND ANGRY AND HURT AND PROTECTIVE OVER LOTTIE AND THAT CAME ACROSS IN MY POSTS SO SORRY IF I WAS A BIT OVERLY RUDE. I'D LIKE TO NOT ARGUE ANYMORE.