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.

2under2, I understand what you are saying about earlier rather than later termination. Unfortunately as there is no fixed policy on screening it is donw to individual hospital when you are even booked in.

When I had DD I was 22, I had my booking appointment at 12 weeks along with a nuchal scan, this was at C&W. This time round I'm 26 by booking appointment was even until 14 weeks and only then did I have the scan. This is at Queen Charlottes, and as it was 14 weeks the results were unreliable as 13w5d is usually the latest its recommended to carry out such a test.

My point is that many hospitals don't even offer an intial nuchal scan unless you are over 35, but the reality is that the majority of DS babies are born to under 35s as the simply have more babies. Perhaps if the writer of the Guardian article had lived in an area where earlier screening was confined to older women (an I know that I'm making the assumption that it wasn't, but I don't really understand why the 'problem' wasn't picked up till her 20 week scan unless this was her first one) then she could have had an earlier termination.

first scan I meant, not first child.

Zebra, are you backing out already? You didn't answer my question, yet I think I answered all of yours. Shame, I would have thought you eager to prove that you are not stupid, or ignorant, or any of the other names you claim to have been called. I would welcome an intellectual debate and I'm sure none of the others would object so long as nothing got personal. It is always interesting to come across different viewpoints, it wouldn't do to have a completely closed mind on the subject would it?

For real women's views on termination perhaps people would like to read this . IMO there is nowhere near enough counselling for women before an abortion, and as a subsequence many women are suffering. I don't agree with abortion as I think it hurts both the woman and the baby. But I am not ignorant to the fact that many other women would disagree with me and have opposite experiences to those I had heard. Perhaps one of those women would like to have their story posted on the site I just linked to.

Not all women who have abortions suffer from it. I know quite a few women who have had abortions and are completely Ok with it, just relieved. I personally have always had a bit of a horror about having one and have always been ultra-ultra careful with contraception for that reason - I mean no sex without a condom if I missed a pill for more than 12 hours, morning after pill within 12 hours if a condom broke etc etc - basically very careful. I am sure that some women find it a damaging experience but for others it really, really isn't. I do believe there was a huge amount of suffering before abortion when women were forced to carry babies they truly didn't want. And also that this is horrific for women. I am very glad I never had a child before ds, as I am now with a man who I really want to be my child's father. I think pregnancy and childbirth and motherhood are far too important to be forced on women who don't want it.

BTW Zebra, I do agree with you that abortion should be a choice, and your statement that you didn't want a baby for life also really rang true for me - I really want to see my ds grow and become independent from me. I adore him but really want that. However, I have regretted so many rows I have got into on Mumsnet (have felt backed into a corner so the version of my views got a bit aggressive - I really am my own worst enemy here sometimes) so was glad to see that you don't see people with disabilities as a burden on society (I admit, I did read your post that way and was surprised) I suspect that like me, you are delighted that other people have children they love, whoever those children are, but would not necessarily make the same choice yourself. I totally understand why people choose not to have any children - I don't take it personally - even though I secretly think them bonkers not to want a gorgeous child like my son! I also support their right to have an abortion just because they don't want children full stop. I don't think it means they don't think I should have and enjoy my kids. I have childless by choice friends who think ds is great, lovely, cute etc, just don't feel their lives would be enhanced by having one like him. It sounds so heartless to say things like this about children with disabilities. But you can think they have enormous value and see the happiness they give - and still not want to have one yourself. Just like my childfree friends. does this make sense?

First chance I had to get back to the thread, darnit.. what was Rhubarb's question? You wrote:
""Zebra, you say "nobody has the right to impose a severely disabled child on others". May I ask you what burden you have to carry in particular?""

Can honestly say I don't understand the question. What does the word "burden" mean when you use it?

When I used "burden" I meant not being a net taxpayer to society over one's life time.

For instance, IVF is supposed to implant no more than 2 embryos. This is good policy from a public health/medicine point of view, because multiples have increased risk of "disability" and being non-net-tax-payers. Even though it reduces the chances of pregnancy. Arguably smoking should be outlawed for all the reasons you list, Rhubarb. Or, a person who chooses to ride a motorbike may argue they should have the freedom to ride helmutless, but society argues that they don't want to foot the ensuing medical bills so wearing a helmut is mandatory. Outlawing the behavior is less drastic than outlawing the people, mind....

Personally my only real problem with the article was that the consultant's views (if indeed, they were his/her views) would appear to the ordinary reader as medical fact, when they aren't, and as an editor myself, I would have gone back to the writer and said, 'are you sure this is what he/she said?' "was your child more disabled than the average DS child - ie the heart defect was worse?" Did you do any reading to discover more about DS? Did you realise at the time his/her statements may not have been accurate?" etc and worked that into the feature. All first person features are edited (I've edited dozens of them myself) and this sort of thing is routine. I assume the editor of this feature was also pretty ignorant about the truth about DS. I also suspect the writer had selective memory - after all, it is a lot easier to justify a late termination to yourself if you truly believe/have convinced yourself your unborn child had no chance of decent life. I can really see that. It is a lot harder to say, I did this for me, rather than, I did this for my child. We all hate to be seen as selfish.

Zebra, by 'others' in your original post I assume you meant the parents, not society.

No time but just wanted to quickly say that I agree - not all women who have abortions suffer as a result. You can also be ultra ultra careful with contraception and still get pregnant when you really don't want to be. In fact, I'll put my hand up to having had an abortion and having absolutely no regrets or side effects other than being allowed to get on with my life at the age of 19 rather than be forced to go through with an unplanned and unwanted pregnancy. Many women died as a result of backstreet abortions before the abortion act and women's right to choose is still under constant threat from various quarters. I know this is straying into a different discussion and I haven't read all of this thread so apologies if it's irrelevant or I'm repeating.

Come on Zebra, you don't really think people with Ds are a burden on society. You don't think that anyone should feel an obligation to terminate a DS pregnancy, do you? I get the feeling you are feeling backed into a corner and your posts sound a lot more heartless than you are as a person. It's a route I've been down myself too many times!

www - If I'd got pregnant at 19 I'd have had an abortion too. And yes, I do know you can be v careful and get pregnant - afriend of mine had a split condom and failed morning after pill but I think it's rare.

I think that Zebras original sentiment was that ALL women should have the right to choose WHATEVER their circumstances, and it is not for us, whatever our personal opinions and feelings, to pass judgement on their decision. I agree with that, what is right for one set of parents may not necessarily be right for another, and those parents that make the decision to abort should not have to justify themselves to anyone. After all abortion is a harrowing enough decision and experience for most women without having guilt laden upon them by the opinionated masses.

BTW, I had a termination at 17 and it was the most emotionally horrific thing. Although I know that my circumstances at that time were not conducive to parenthood it doesn't stop me living with the sense of guilt and loss every day of my life.

Aloha, I wasn't implying that you didn't know that one could be careful and still get pregnant, in fact it wasn't aimed at you (or anyone in particular), I was just (perhaps needlessly) pointing out in a kind of don't-anyone-be-smug-just-because-it-hasn't-happened-to-you kind of way that unwanted pregnancy could happen to anyone who's having sex, regardless of how careful they are. Shame we haven't got an exasperated/wires crossed emoticon here but if we did I'd be using it. Really am off to talk to dp now!

Thanks, Aloha.
All I really want to say, is that it's wrong to judge a person who doesn't want to take on a seriously disabled (if I can be allowed those words) child. I can't make that decision for someone else; I don't want them making it for me. I never said, not anywhere, that people should be obligated to terminate for anything. Or that they should have the choice to terminate for anything, either. I would support, however, the principle of terminating on the grounds of likely severe disability.

When I used the word "burden" before it was only in the context of whether a campaign to outlaw termination in Downs Syndrome cases would be successful, and why "society" meaning public health policy makers, really would tend to oppose such a ban. I didn't mean "burden" in any other sense except this financial one to society as a whole.

One question that springs to my mind is that if you campaign to outlaw termination for Downs, where do you draw the line? I don't want to turn this into a huge discussion but it is something to think about. There will always be someone who disagrees one way or another with where your line is. There is no general right and wrong in something like this: everyone's personal decision is right for them, with the caveat that they are have been provided with accurate and unbiased information.

eidsvold, pie and SD - thank you for your ocmments.

Pie - that must have been very tough on your aunt. I find it amazing that almost everyone I speak to 'knows' someone who has the same thing as DD. Since the condition is rare, I know it's unlikely so I just find myself nodding and saying 'Really? I'd love to talk to him/her about it cos I'm tearing my hair out trying to find people to talk to.'

By the wonders of the internet I have found some support through yahoogroups but the people on there are mainly much older and in the US. It is interesting though to see what has happened to them as they have lived their lives.

Last week we met up wih another family - I think I mentioned this elsewhere - whose daughter has the same condition. We all went to the zoo. Both the girls, who are similar in age, knew that we were meeting cos they both have achalasia. And they are both pretty bright. As we sat down to our picnic they watched what each other ate and how each other coped with it. One family. Fortunately they are only 30 miles away.

Our surgeon has now seen 16 patients. DD was no 7 last year. Of the additional 9, I know only 2. I must try to persuade him to pass on my contact details to the others..... But I am pleased he is now being recognised as a specialist. A study in 2000 showed that the first 20 are a steep learning curve. Whilst I want DD to get further treatment soon, every patient he treats is another notch on his belt and more experience to help him make better judgement.

I'm copying this from my last post in the special needs section. I don't want to get into an argument about whether or not people should be allowed to terminate for DS becuase for me that's not remotely the issue.

So anyway here goes

from special needs- but it seems to fit in here as well.

I think the problem with this argument - and the reason it has turned nasty- is that people don't understand that having a disabled child means that you are continually out and about with a child that society in general assumes isn't quite the real thing. Maybe if you haven't lived with that then you can't understand why it is so hurtful. I don't really have a problem with anyone's personal decision-providing it is made with correct knowledge, but I do have a problem with a society that assumes the correct and right and most noble procedure is to terminate.

I mean we all post on here fairly regularly about appalling attitudes from family, friends and our friends in the medical profession. There is a huge pressure from society to terminate for disability- and I'm not sure why that is. I don't buy this 'I couldn't cope with the pressure" arguement- not for DS (although I agree about trisomy 18 and trisomy 13) otherwise why wouldn't everyone be aborting twins to produce single pregnancies (after all they're harder work, more likely to be premature, more likely to have all sorts of problems). I suspect the pressure runs deeper than that. When I mentioned not moving on from the stone age before I was thinking about children with say a hare lip who were left to die. What about today- if hare lip couldn't be corrected today do you reckon that would be sufficient grounds for termination? I suspect that this is why those of us with special needs children found the article so troubling. I did feel the woman was repulsed by disability. I guess I'm arguing about that (all to common) attitude. But I suppose if you don't have disabled children you don't reaslise that that attitude is out there, and you don't realise that we are fighting that - rather than someone's right to terminate.

Does that make any sense?

Sue I just wanted to say keep on trying to make contact - a support group I belong to was started by two mothers with children who had Down's syndrome ...and they have made amazing strides in trying to break down the barriers and raise awareness of Down's syndrome.

That day at the zoo must have been such an amazing time not only for you but your dd. Hope you get to spent more time with the other family and you are able to support and assist each other.

Good idea about passing on contact details SueW- the best support comes from those in the same boat as they do really understand. I speak to my autism friends every day- and they really help.

eidsbold - one of the things we talked about last week was the possibility of starting some kind of support group or charity, doing some sort of fundraising. Unfortunately, in spite of many hours of thinking it over the in shower (I'm sure you all know where I'm coming from!) I still haven't got a firm plan.

Sue - would it help to talk to the woman who started our support group - she might be able to give you some ideas .....I am sure she would love to help.

Zebra, I don't think whether or not someone is a net taxpayer is an adequate definition of whether an individual is a "burden" to society even if purely in a financial sense. In the UK, there are around 27 million direct taxpayers which I think equates to around half the adult population. So at any one time, taxpayers are in the minority even taking into account the elderly and children.

In any case, whether or not you pay tax surely doesn't necessarily determine whether you are a net contributor to the state. Equally, just because you have a particular disability doesn't necessarily mean you will ultimately cost the state more than an able bodied person. Personally I would be surprised if many people thought about disability in a financial context anyway.

Jimjams, without wishing really to discuss whether it is right or wrong, I think for most people the relevant difference between the pressure and stresses of having twins and having a child with a disability such as DS is that with twins you hope and probably assume that your children will, within 20 years, grow up and be more or less totally independent from you. With DS there is a perception that is often/reasonably often correct that the lifelong dependency will be much greater. This may not bother a lot of people, but it really bothers and worries and frightens others, particularly, perhaps, older parents who already have some concerns about how physically fit and mentally resilient they may be in 20 years anyay. I agree that in the short term twins would almost certainly put more stresses on a mother than a DS child, but I think the issue here is the lifelong element of DS. Again, I am sure that the vast majority of those who choose termination do not consider that existing DS children should not exist, but are merely making a decision about themselves and their lives. Of course, being informed about the facts of DS should be a vital part of that decision-making process.

Aloha- I do see that and I agree. Maybe some people do make that sort of informed choice. For example pie seems to have done exactly that- and did it before going for testing- and of course I can totally understand that, and totally repsect that.

However - for many people the idea of disability is repulsive. They don't make that kind of decision based on hard fact. They just don't want a disabled child. And I did feel the woman in the piece came into that category. She found her body "disgusting" once she realised her baby had DS. That's what I found disturbing. Sure she justified it to herself using her consultants words (and if they really were his words they were way off the mark), but really I think she just didn't want to have a DS child.

And yes that view does horrify me. And it is something you come across daily. When DS1 had severe eczema- everyone asked me how he was, how I was, how did we manage, how did he manage etc. When we started going through the autism diagnosis suddenly some people couldn't bring themselves to talk to me anymore. Now three of those people had known ds1 since the day he was born and had seen him several times a week for the first 2 years (it was shortly after this the road to diagnosis began), and yet they still haven't mentioned the A word. They still can't ask me how he's doing. I remember one day when we had just started the diagnosis stuff. A friend visited with her daughter. DS1 was just over 2. He started having a tantrum over something (I think it was becase I'd said equals when he was holding a divided by magnet- nothing major). The friend just looked at him horrified (and I can still remember the look on her face) and said "do you want me to go home?" She had just arrived- no I wanted her to put the bloody kettle on. He was 2- an age when tantrums are common- but for some reason his was suddenly undesirable, and embarrassing and possibly (judging by the look she gave him) repulsive.

So when I read that someone finds her body disgusting becuase she has a DS baby- then yes I do assume that people find my son disgusting. I do make that leap. Neither DS or autism are "socially acceptable" disabilites. And maybe that's why Lil and SueW didn't find the article upsetting in the way that those of us with children with DS or autism or CP did. Their children have quite severe special needs which do put a toll on the family- but they a "socially acceptable" conditions- by which I mean friends and family won't be embarrassed to ask about their children and how they are doing.

Does that make sense? I'm just trying to voice why I think the article was so offensive to many of us. It's not to do with the act of termination, and its not to do with someone's choice. It's just that the article reflected society's view that our children are "disgusting".