Ignorant/Infuriating Guardian story

[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.

seriously lou!!! God! Actually that shoudn't surprise me- and it does explain a lot about the predjudices people grow up with.

Totally missed the point Thomcat! And don;t you just want to say to people sometimes...

"wrong audience........"

Seriously Jimjams, I would LOVE to take her back and ask them to justify themselves now. My sister was told virtually the same when her boy was born with ds 14 years ago too. Different hospitals , same spiel.

Yeah that and F right off!!!!

lol@lou and thomcat.

We haven't had that voiced, but I do get the distinct impression that ds1 isn't seen as being worth bothering with.

By who Jim Jams?

By his consultant mainly, and the original SALT (now gone thank god) The original SALT is the autism specialist- I have yet to meet a parent who hasn't been infuriated by her. She is so negative!

How awful. I get Portage where I live, (it's not available everywhere) and they come round and see how Charlotte is getting on and when she leaves she leaves me feeling fantastic. if Charlotte blinks she thinks it's fab!!! Well Ok, I'm exaggerating but the smallest things she tells me how fab it is and how well she's doing, that's what you need, not a professional being neagative. God almighty! So you have to continually fight in your son's corner with him do you, to make sure he's not pushed under the carpet so to speak.

Feeling a little wary of poking my head over the parapet at this point so please don't shoot at me.

Jimjams -

Zebra, please look at the other thread on this subject and feel free to comment on what I have written there. I have no qualms about debating this subject with you, if you think you are up to it.

Where's the other thread on this topis Rhubarb? Sorry had a quick look but couln't see it.

In The News/Ignorant Guardian Article

thank you

I feel very strange having started this and seen it grow into slanging match where I ( and others) feel I have to defend my dd's right to be alive let alone not be a burden to society.

I posted in here originally ( before in the news thread) as I just wanted to see if it was just me taking it all personally or whether some of the information was scarily misinformed and prejudicial. I also wanted someone else to say - yeh I thought that too - someone who had not been in the same position as me/woman in article. Perhaps that would make me feel that I was not taking it personally but rather that i did take it as others would take it.

Attitudes like those expressed by Zebra make me want to scream LOUDLY out of frustration and wonder how seemingly 'intelligent, educated' people could be so ignorant.

You know all day today everytime I have picked dd up I have just held her so tight ( tighter than usual) feeling as if I need to shelter her from the world. How sad. It seems we are not as progressive and accepting/open a society we think we are. Human rights and dignity for Asylum seekers/burglars, drug addicts etc but not for my daughter.......

This is the email we sent to the Guardian...

Having just read Emma Loach's 'confessional' (which contained many generalisations and factual inaccuracies) we are compelled to provide an alternative view to dealing with the news that your baby has a heart defect and Down's Syndrome.

My wife and I were faced with a very similar scenario to Emma, however we chose a different outcome. Our daughter is now a beautiful ten month old baby who has survived two open heart surgeries as well as complications. She continues to grow and develop every day as any other baby would.

How sad that this story whilst serving as a means of confession for one person also managed to persist in spreading ill informed and ignorant views rather than to enlighten and educate others in order to break down the stereotypes and misinformation surrounding Down's Syndrome. We were particularly saddened given that next week is Down's Syndrome Awareness week. The information and attitudes presented by the medical staff were shocking. We found it difficult to believe that medical staff could be so ill informed regarding Downs' Syndrome and the quality of life experienced by people with Down's Syndrome.

We have attached our story in the hope you will publish a more positive and balanced view to this and help to break down the ignorance and misinformation that pervades our society in relation to Down's Syndrome.

Well done Eidsvold. FWIW, while I wouldn't criticise anyone for choosing to terminate a pregnancy under these circumstances, I was shocked at the selective use of DS "facts" in the article.

While accepting that it was just one woman's view I think you do have a valid point in that it served to spread / reinforce misconceptions and prejudices about the condition. I would have thought the Guardian could at least have printed some sort of factsheet on DS alongside the article.

Wicked, well done Edisvold, I think that's brilliant. I wish we could get them to read this thread as well!
It's such a shame that there are such ignorant people out there, Zebra being one of them, she was incredibly offensive. We can only try, bit by bit to try and educate those we come across that seem to be living in the dark ages still and hope that after talking to mothers like all of us they will go away realising that children, like ours, are wonderful individuals who make the world a richer place.

Yes but by condeming and singling out posters such as Zebra, what good are we doing? Hard though it is, should we not be tolerant of their views and not sink down to their level of insulting and offending? The best impact to be made is through example, and I think we should rise above such posts and show instead how proud we are of our children/siblings/relatives. You may never change people's minds, but you can choose which impression to make upon them.

Rhubarb- you're right I did lose my temper. I just find it incredible that Zebra would come onto this thread in special needs and then be surprised that we don't agree people should be terminating for DS, and that we all get a bit emotional. I wouldn't really have had a problem with her view in "in the news" - does that make some kind of sense?

I like those places beetroot- they sound a bit like Camphill communities. (BIBIC is later in the week if you're wondering why I'm here )

zebra - I didn't say you were playing God, I said the medical profession were (and are). Seems like there is plenty of grounds for campaigning. If things have changed so much for DS children then perhaps it is time to change the rules about abortion.

However under current rules a healthy child can be aborted so I can see where zebra is coming from to some extent. I think it is all to easy though to get an abortion, healthy or otherwise.

janh - if your first child was diagnosed with Down's would you have aborted that child? Surely its not fair to decide on whether a child should live or not just down to its birth order?

just to add an interesting thought which relates to the info 2under2 shared about the conference... Howard Cuckle - if you have read any of his stuff is all for screening in pregnancy for all sorts of conditions - his reasoning - cheaper to test and terminate than to have the child born and have to provide medical care for the rest of their life. A friend has read a lot of his stuff and I do have the actual facts but that statement sums up his attitude. ( not just for down's syndrome)

It sounds like this place in Scotland, Beetroot. A friend works there as an art therapist - interesting stuff.

I thought we were having a discussion about the public and the inaccuracies bandied about with regards to disabled children, but somehow it has turned into a rights and wrongs of abortion, and all gone horribly wrong.

I know exactly what you mean Jimjams about this feeling more personal , rather than in the News section. We spend a lot of time seemingly having to justify and explain the existence of our children to a lot of ignorant people (not calling anyone in mumsnet that before I start a war), and mumsnet has never felt like that, I hope it doesn't change. I have many fears for the future of my son, and had many in the past as he has grown, I'm sure we all do, and certain comments are bound to throw all that hurt and worry up again, which is why this particular thread is so sensitive. We've already been through enormous amounts of battles, I'm sure none of us want another one here.

I've said my piece on the other thread, (thank heavens I didn't accidentally post it here though...come on, the threads have the same titles more or less, you can't blame anyone for either being confused or posting on this one rather than the other, surely?) so I'm not going to say more but it's a pity that an interesting and important discussion has degenerated into a row.