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Telly addicts

A world without Down's syndrome?

663 replies

Hulababy · 05/10/2016 21:12

Anyone else watching?

Interesting so far

OP posts:
Rockpebblestone · 10/10/2016 08:51

'...choose to continue with a pregnancy, aswell' , that should read.

BertrandRussell · 10/10/2016 08:53

No, you didn't, Rock-my comment was directed to AmbivalentGirl. Sorry.

Rockpebblestone · 10/10/2016 08:55

That's ok Bertrand. Thanks for clarifying.

HandbagCrab · 10/10/2016 10:18

Bertrand you said earlier "What I am worried about is some people's bad experiences being taken as the norm, and being used to control other women's choices."

But I have also taken it that you are also worried that people's good experiences like Sally's will be taken as the norm and used to control other women's choices too.

I think women deserve the full, accurate picture with the good, bad and indifferent that comes with it so they can make informed decisions. If we hide people's bad experiences with hcp or good experiences with their children with ds because we are worried that it will be used to control women's choices then, imho, we are controlling those women's choices by choosing what information is available to them.

I think you should go and re read some of the things you have written ambivalent because I cannot believe someone has thought through what you have written. Hcp considering the rights of the unborn child over the mother's rights to keep a disabled baby is disgraceful. If ss are involved because there is abuse and they need to protect the child then that is a different matter. Women can choose to keep a baby for all manner of reasons beyond activism or religious reasons, just as they can choose to have a termination for any reason they like.

It feels like the opposite of pro life isn't pro choice in some people's eyes. It seems that as pro lifers want to control women's ability to terminate a child, some people want to control women's ability to carry a child to term. I'm really surprised.

Pagwatch · 10/10/2016 10:24

It's also possible to totally support any individual woman's right to chose whilst being concerned that a societal consequence is that we are moving towards a world where screening ultimately edges towards eliminating imperfection

seymour · 10/10/2016 11:30

This is really interesting, it's given me a lot to think about in terms of the NIPT and in particularly the scenes with the brave woman who talked about her abortion on the programme and the one with the woman talking to the midwives etc.

I'll come clean! I have a daughter with DS. And I am pro-choice for women full-stop in any circumstance. Sometimes that's an emotionally difficult tightrope to tread but...

I didn't have a problem with the bias of the programme - there has been enough bias for years from the other side and if someone wants to make a follow-up programme from another perspective, feel free.

I'm afraid I don't have any stats either, I'm not sure they exist! But I can tell you that anecdotally, I know many, many women who come on to an online DS forum I use - and those I have met in real life - who are really being given very negative information when diagnosed prenatally or postnatally, including myself.

I totally agree with women being given balanced information and all the facts. The problem is that it's often only the negatives that are focused on. Women deserve to be told the truth - the good, the bad and the ugly - on both sides, so they can make an informed decision.

Again, only anecdotally (and in the information I was given with the diagnosis by the hospital), the vast majority of people with DS have mild to moderate learning difficulties. I've met one child out of about a hundred or so who uses a wheelchair. Most of the children I know with DS go to mainstream school and young people/adults work in some capacity. I totally understand how those with a prenatal diagnosis don't know if their child is going to be in that majority and that might be enough to make them to decide to terminate. I completely respect that.

But there have been quite a few comments on here re "cute as children but wait til they're adults." Please. It's not the 1950s! Of course there are adults with DS who have more difficulties than others but the way these comments have been made is pretty offensive, and I'm sure not just to me.

And I do worry about where the testing is going to lead next in terms of so-called "perfection".

I have had to make financial sacrifices for my daughter i.e. I didn't go back to work full-time as soon as I would have done, so money was a bit tight. But it's ok. And our family life, while having its challenges, is pretty much normal to be honest. My daughter has a very happy life. Again, not the case for everyone with a child with DS but it is the case for many. My daughter may find things harder as time goes on and of course I worry about how she will be accepted when she is older, boyfriends etc. But then I worry about my older daughter too with no disability!

I hope I don't sound like I'm trying to persuade anyone that life is a picnic with DS in it or judge anyone - I think (perhaps like Sally) we just want to have a voice in the debate as we haven't really had one by now.

We are trying to plan financially and otherwise as best we can for if we outlive my daughter but I don't resent my taxes paying for other people who need long-term care/NHS treatment, so I hope others can feel the same.

Thanks for reading.

BertrandRussell · 10/10/2016 13:19

Handbag- I have no problem at all with SP or anyone else making personal documentaries about their lives with their children. And they might be very useful for people to find out what life is like with children with Down's, or with other disabilities.

However, this programme was not about how she lived her life, but how she wants other people to live theirs. A very different thing.

KAbioye16 · 10/10/2016 14:11

Absolutely shocked at lots of the responses here. Thought the programme highlighted problems facing pregnant women in that the doctors will push the idea of termination on a woman has any fears during pregnancy. Also encourages discussion and thought about why the screening process is even there. Very sad that so many people think people with any disability are of little or no worth and don't deserve the chance of life.

Branleuse · 10/10/2016 14:37

I have children with disabilities who are the absolute light of my life, but that doesnt have any relevence to thinking that women should be able to CHOOSE whether they are able to become lifelong carers for a disabled child of unspecifed or unknowable severity. People who choose to abort for downs or spina bifida or edwards or whatever, dont do it because they dont like people with those conditions. They just dont feel like they could cope with it. Some people do, some people would never abort for anything, but they should still have access to safe testing where available so they can prepare if thats what they want, and people who would abort for medical reasons, should be able to make use of early testing so they dont have to go through amniocenticis and late term abortion.
Surely even those who are anti abortion would prefer that if its going to happen, then the earlier the better??

tanyarumins · 10/10/2016 14:58

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PunySorrows · 10/10/2016 15:10

Tanya, why you would think it's in any way appropriate to post that on a thread dealing with such serious issues is beyond me.

BertrandRussell · 10/10/2016 16:03

"Very sad that so many people think people with any disability are of little or no worth and don't deserve the chance of life."

Nobody thinks that. Please read the thread properly then join in when you have a proper sense of what people are saying.

user1471134011 · 10/10/2016 16:12

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Message withdrawn at poster's request.

LineyReborn · 10/10/2016 16:34

KAbioye16

Oh do get a grip. Or an IQ.

PunySorrows · 10/10/2016 17:37

Very sad that so many people think people with any disability are of little or no worth and don't deserve the chance of life.

It would indeed be very said if anyone had actually said this, or anything approaching it.

raspberrysuicide · 10/10/2016 22:06

Actually I think it's been the opposite.

benandemma · 10/10/2016 23:33

Wow, I think the tone of this thread is eye opening. It's exactly what families of people with ds are trying to stand up and change- to urge you to put your outdated and narrow interpretations of down syndrome aside, and realise we are living in fast paced world where today the majority of children down syndrome are nothing like the picture you above are painting.

But people are so far up on their high horses about a woman's right to test and right to choose control over their bodies, that very very few actually got any of the message from that documentary.

I don't see anyone, anywhere, who wants to limit a woman's right over her own body.

So can we please put the pro-choice versus pro-life debate to one side, and assume, for argument's sake, that we all agree women should have the right to choose whether to terminate or now. Testing is invaluable. Choice is invaluable, without a doubt.

But let's focus for a minute on what the actual thrust of the debate should be- whether appropriate information is given out to women if they receive a prenatal diagnosis of down syndrome. What they choose to do with the information is their own business.

The argument is that this information will weigh heavily towards urging women to terminate solely on old fashioned, negative and narrow perception of what life with down syndrome is actually like. (quite like what some of you above seem to believe life is really like).

Of course the documentary showed how normal and great Sally's life with her son is, because, guess what, the majority of families I know with children with ds, is bloody normal and great.

Mine included- My darling 13 month old ray of sunshine has ds. She is the gem that is loved by her two older siblings and her parents. She is the exact same as her siblings were at her age. And while she will have a learning disability of some degree, at the moment she's got the staff at her creche (shock horror, we actually can work and have a baby with ds), wrapped around her little finger.

She may not always be this cute, (thanks for pointing that out btw) but neither will my two other 'typical' children either probably. She may or may not live independently. But if she needs to be cared for, then we (her family) will care for her. Because that's what family of loved ones do. Do her siblings think she will be a burden? Well you should be lucky enough to see them together. The love they have for each other. If your typical child develops an illness that means they might need full time care- will you view them as a burden?

Yes some babies (not all) with ds will have heart defects, the majority of whom have heart surgery at a few months old, and go on to lead healthy lives. Some will have thyroid issues (so will need medication to control it)- is this any different to if your typical child develops epilepsy? Or adhd? Or depression? Are they a burden?

And yes, I am horrified by this thread. For it bears no reality to the life I am living. Nor that of the families of children with ds in my social circle. None of whom are wealthy, most of whom for the most part, hold down regular jobs and lead regular every day lives.

Well done Sally P. You played a blinder. Unfortunately, your message is probably only appreciated by those lucky enough to know what you're talking about. Every one else, thinks you;re privileged, or that we're all deluded.

I take comfort in the fact that I, and my family, are the lucky ones, to have our wee dote in our lives. If I had listened to the medical advice or gloomy diagnosis she wouldn't be. I'd be poorer for the love she brought our family. Now, that would be a real tragedy.

But it's probably easier to focus on the pro life versus pro choice argument, than see how superficial our society has really come. Where we strive for perfection and don't realise love and the people in our lives is all that matters.

AutumnColours9 · 10/10/2016 23:51

Very sad that so many people think people with any disability are of little or no worth and don't deserve the chance of life.

I don't agree with this. How does that tally with the case mentioned earlier of a parent who already has a much loved child with DS who chooses to terminate the next DS child because they have to consider their resources and existing child.

I know a few people who terminated for abnormality. None of them did it because they don't value disabled people. Some people feel it is unfair to go ahead knowing the baby will have severe problems. Some people believe they did it out of love. Maybe that view is different to others but doesn't make them wrong. Noone can love their baby more than the parents after all?

Choosing between two very difficult options is horrendously stressful. I speak from experience of making 2 different choices (one downs and one more severe). We chose not to have the amino with positive bloods for downs because we thought we could cope with downs. In part because there was a child we know with DS. But I wouldn't judge someone who made the other choice.

Whilst there is austerity, low resources and benefits bashing though I can see more people choosing TOP for financial reasons.

BertrandRussell · 11/10/2016 06:16

benandemma- I can only assume you haven't read the thread.

LynetteScavo · 11/10/2016 07:01

Oh, I think benandemma has read every single post on this thread!

SlightlyCrumpled · 11/10/2016 07:14

Benandemma Flowers for such a great post.

BertrandRussell · 11/10/2016 08:49

"So can we please put the pro-choice versus pro-life debate to one side, and assume, for argument's sake, that we all agree women should have the right to choose whether to terminate or now. Testing is invaluable. Choice is invaluable, without a doubt."

But if we are discussing this particular programme we can't put that debate aside. Because it was key to SP's argument that testing was not necessarily invaluable and women should not necessarily have the right to choose.

JinkxMonsoon · 11/10/2016 09:26

And yet again we're back to the assumption that pregnant women who receive a diagnosis of Downs are being given biased/incorrect information, because if they were given unbiased information (despite no one being able to define what unbiased looks like) then the termination rate wouldn't be so high.

I don't think we're going to get past this somehow...

user1471134011 · 11/10/2016 09:29

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user1471134011 · 11/10/2016 09:32

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