A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

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.

Agreed. There seems to be a lot of leaping to the conclusion that the high numbers of women choosing to terminate are doing it because of biased or poor information or pressure from HCPs, rather than just choosing to terminate of their own free will. Why is that so hard to swallow?

This thread is being condemned as disablist on another thread. Please can someone who agrees explain why?

I've asked on the other thread as well.

I knew someone with a late teenager ( at the time) with downs. The issue of 'cute' or not did not arise.( most late teens arent 'cute' anyway) The issue was no independence , severe learning disability and a lifetime of constant supervision.

Phillips may want to consider those who walk in those shoes.

Agree with jinxx
"
I don't think we're going to get past this somehow"

Some women will terminate. And some won't.
The risk is that you don't know how severe it will be.
And there simply no way round that.
It really is end of. What more is there to say?

I only made it to page 14 but feel like I need to comment. I am a disabled woman and if my tests were positive for any kind of disability or illness when I decide to have kids I will absolutely terminate. Up until recently I didn't want children at all because I was afraid of having a disabled child. I wish my mother had terminated me. That's not to say I am suicidal anymore as I have made the best I can of my situation but by God do I wish I never had to.

I can't tell you about the delights of pain, body consciousness and the crippling depression of adolescence and not fitting in and the constant bullying, or the minefield of dating. Actually I can. Have you ever had to try to figure out whether a guy wants to fuck you because he fancies you or because he wants the "experience" of sleeping with someone with a disability? Or my favourite, guys thinking I should be grateful for ANY attention from them because I must be desperate and up for anything. Actually this isn't strictly exclusive to disability as I hear from a few overweight friends. I happen to also be bisexual and have had people say that I'm turning lesbian out of desperation!

Most of these issues are societal and I have found ways to deal with it or work around it. But I really, really wish I hadn't needed to find these ways. And I certainly don't appreciate being a living piece of inspiration for "normal" able-bodied people who learn to appreciate how lucky they are because they are not me so please fuck off with the whole "disabled people add vibrancy to life" fairy bullshit.

There seems to be a lot of leaping to the conclusion that the high numbers of women choosing to terminate are doing it because of biased or poor information or pressure from HCPs, rather than just choosing to terminate of their own free will. Why is that so hard to swallow?

I imagine this will go unanswered but I think it is a brilliant question. It goes hand in hand with the "if you knew what I knew you wouldn't terminate."

I can sort of see why it's hard to swallow when you yourself have a child with Downs, or a family member with Downs, or work with people with Downs/LDs.

I get it. I get why it feels personal, even though it really isn't.

But equally, the majority of women choose to terminate so it can't be that difficult to understand. Very few people will choose that path of continuing a Downs pregnancy because it's a bloody difficult path full of unknowns. Not many people will actively choose that kind of future for themselves.

I know I wouldn't have.

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.

Regardless of whether you believe this assumption is true or not, this does not negate the fact that women are at the receiving end of pressure to abort from HCPs (as they have reported on here and on the documentary). Regardless of the number of women who feel this, this is wrong. Women have a legal right to choose to continue with their pregnancy. The NHS should universally reflect this and respect this.

Babooshka - thank you for your post x

Bertrand the post below, from AmbivalentGirl*, I felt came very close to being disablist. I didn't report because I feel the comment is very revealing regarding some people's attitude towards disability and why they view termination, when faced with a foetal diagnosis of Down's, to be somehow 'kinder'.

I would hazard a guess that some HCPs feel strongly about making sure the option of termination is entertained because they will be the ones picking up the pieces if they parents decide that they can't cope.

I have worked with HCAs who have cared for people with learning disability who have gone out into the community and been gang raped or used as slaves for running drugs and ended up in prison. HCPs who work in the area of serious LD are the first to say that the myths of cute Down's babies hide the serious and devastating consequences of having a LD without adequate support. These children grow from vulnerable babies into vulnerable adults.

Whilst diversity is a positive thing, I would never knowingly choose to bring a child into the world who is more likely to be emotionally, physically, financially, emotionally and sexually abused than a child without their condition. I would not make my child into a political statement when the risk is that they will be horrifically manipulated or neglected by society. It is just not fair.

People with Down's are visibly so, and certain people will always seek out and target them since care in the community has taken over and they cannot be kept safe.

The assumption, that we should solve the injustice of prejudice and exploitation of disabled people by aborting foetuses when disabilities, such as Down's, is detected, I find deeply unsettling. Imagine if this 'solution' was applied to other sectors of the population that are deemed 'at risk' of being at the receiving end of prejudice and injustice. Since when has protecting the vulnerable meant seeking to eliminate them?

Saying that, as I have said already, I am pro-choice. However I think it still important to have a discussion regarding why women choose to abort in certain circumstances, in order to see if the women's need for abortion can be reduced or avoided. Abortion can be deeply traumatic, for a lot of women, so avoiding the need for it must surely be an aim for society. This need should be reduced, IMO by addressing prejudice, changing societal attitudes and increasing support not by reducing choices for women.

women are at the receiving end of pressure to abort from HCPs (as they have reported on here and on the documentary). Regardless of the number of women who feel this, this is wrong. Women have a legal right to choose to continue with their pregnancy

Of course they do, and no woman should be forced to terminate a wanted pregnancy, which is why I'm dubious about how prevalent this "pressure" is and what form it takes.

although I'd hate to deny someone else's lived experience, I find it hard to believe that women are being genuinely pressured into terminations they've explicitly said they don't want. I believe HCPs question their decision to continue with a pregnancy. I believe that they get asked repeatedly "are you sure?", "are you really sure?" and "do you realise the implications?" but is that the same as pressure to abort?

I don't think anyone on the programme or on here have said they were under pressure to abort. I think some women felt under pressure to test. I suppose I could say I was- but I thought of it as HCPs making sure I was certain about my decision during a relatively short window of time. I don't think asking more than once is pressurizing- although I know others might.

I think continued questioning of a decision, by HCP, especially if coupled with disbelief or apparent dissapproval, especially if the risks of that decision are then reiterated, this could easily be construed as pressure. The woman in the documentary even specifically requested her decision not to be brought up in discussion and yet it was.

I think it is enough to be informed once, given written information, told follow up appointments can be made for further discussion along with being told about the time window for changing your mind, backed up in writing.

I think continued questioning of a decision, by HCP, especially if coupled with disbelief or apparent dissapproval, especially if the risks of that decision are then reiterated, this could easily be construed as pressure

And yet the HCP could say that they're merely fulfilling their professional duty to ensure that a woman has not changed her mind/understands the implications of her decision. The woman herself may interpret this as pressure and disapproval but that may not be so. It's subjective.

Fair enough.i suppose that I can't see how you'd see HCPs that often in the window between, say, neuchal translucency and the cut off for amino that you'd feel pressured, even if they checked every time.

I''m interested still in people being pressurized into abortion. Nobody mentioned it in the programme- is it an experience people have?

It is somewhat, Jinkx, but that does not mean that more efforts should not be made to avoid a situation where a woman feels pressurised. That means appreciating women's lived experiences and not, in any way, dismissing them (because they are subjective or might be experiences of a minority), is important. I'm sure if, universally, more thought is given, concerning what could potentially be construed as pressurising, things would improve. Certainly if a woman requests no further discussion, over a decision that is legally her's to make, this should be respected.

Bertrand yes, pressurising into abortion is maybe not so overt. Although on the documentary I remembered a woman saying HCPs made comments such as, '...you don't want another one like her!' (paraphrasing), referring to the woman's daughter who had Down's.

And if attitudes, such as AmbivalentGirl's posts betrayed, that is suggesting keeping a child with Down's is somehow cruel and irresponsible and that, as she said in later posts, 'pro-choice is about abortion', are held by HCPs and spill over into their practise I can see how this could easily happen.

Bertrand, re. Pressurising to abort

"However, while making the documentary I heard many, many stories of women being pressurised by medical professionals to screen, and even to terminate. “Let’s stop this nonsense now while you still can”, “I’ve booked you in for a termination in the morning”, “Your marriage will break up if you have this baby”, “You don’t want another one like her, do you”, “They put a great strain on the NHS, you know”. These are all direct quotes. I hated being pregnant. I find the idea of being forced to carry an unwanted baby to term pretty horrifying, but I think being pressured to terminate a wanted baby is much worse. Choice works both ways, after all."

Taken

Sorry pressed post to soon. Taken from Radio Times interview, here:

www.radiotimes.com/news/2016-10-05/sally-phillips-society-wants-to-stop-down-syndrome-babies-being-born--and-its-wrong

Are they quotations from SP? I'm sorry, but I do think the programme completely shot her credibility. Why didn't she have any of those women on the programme?

Having now read that article, I think any claim that she is pro choice is utter, utter bollocks.

As I have mentioned before, she spoke at an anti-choice rally and is all over an anti-choice website, so if she is pro-choice she has a strange way of showing it.

As for 'who gets to choose?' - the pregnant person does.

Bertrand I think she did. I remember the one who was told "you don't want another one like her, do you?". It was the same woman that specified she wanted no further discussion on her notes.

I don't think Sally is making this up, in order to push an agenda. More that, I think, the evidence of Sally's own experiences and from her investigation of other's experiences have lead her to question; how pregnant women are treated within the NHS, how Down's is regarded, the advice the NHS gives about Down's and also the future direction of screening.

This is just going round in circles. 90% of women terminate because of ds anyway so I doubt anyone is being denied a termination. Disbelieve that hcp pressure women all you like or patronisingly suggest that women don't understand that hcp just have their best interests at heart or whatever, I'd just be grateful if I were you that I hadn't been in that situation/ felt I'd been in that situation. Is there a particular reason why you don't want to believe what people are saying happened to them regarding ds testing and diagnosis?

The thing I find concerning regarding the subject of choice, is whilst their is a choice, people may still pressurise a woman into choosing a particular way. If those people are HCPs then this is very unsettling. This is one reason which could lead people to want laws changed to more strongly reflect the choice they feel is right - to protect themselves and people who think the way they do from being pressurised into making a choice they would not want to make. This is why there really cannot be any doubt amongst HCPs regarding respecting the decisions a woman legally is allowed to make.