A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

I get it completely... but then I have a disabled daughter and know how some people would not choose the journey that we've travelled.

For us it wasn't a choice however. I think the really tough part of all this is making that choice should the test show a positive result...

I think it was a good programme and she was brave to make it.

I think it is should be socially acceptable to terminate for any reason.

The biggest issue that was totally ignored on this programme is that someone in the family has to become a carer. This has a huge impact on the life of that person. And it is a lifelong responsibility. For people without the money to hire in help it is a huge personal sacrifice to make, and often you are not only making that choice for yourself but for your other children too.

dh works with adults with downs who receive council services

the services are getting slashed to the bone and life for these adults is getting harder and harder, and for their carers, who are usually their parents, in the 70's and 80's

thats the reality not shown in this programme, life is hard enough if you dont have money to throw at the problem but if you have a child with downs its never ending and fucking brutal

I too wish there had been a lot more stats about severity of health issues in adults with DS, it was biased

Morality? This programme is a disgrace.

Totally agree. My husband turned it off...as I was yelling at the TV. Since when did the BBC broadcast such propaganda? I presume next week they will be asking the GP who posted above about her experience of looking after a 50 year old with Downs Syndrome and early onset dementia. And the women who have miscarried healthy foetuses after an amniocentesis. Utterly disgraceful that this is on the BBC.

I don't think she was trying to take away the right of anyone to terminate. What she was attempting to do was to show the human side of down's syndrome - not the heart problems/severe learning disabilities.

Her beef seemed to be the fact that the medical profession present down's syndrome as a disaster. The worse case senario during prenatal screening. As people said above that there are conditions incompatible with life that were not mentioned during the publicity for the recent roll out of testing.

I attended a disability conference where a researcher presented her discomfort with testing from the perspective of being a feminist and pro choice but uncomfortable about termination of babies with her disability (severe visual impairment). You can be pro choice but question attitudes to prenatal testing and termination for disabilites.

It's the wider implications - what else should we start screening for so termination is an option?

Absolutely, the poem 'First they came ...' comes to mind.

My view was she is/was trying to get the NHS to maybe give some more rounded advice when someone is faced with the diagnosis of DS. To me it's horrific that nurses and midwives cried when delivering DS children. It was also implied that once given the diagnosis women are told about abortion in almost the same breath. It's a difficult choice but I do so welcome the much less risky testing.

With the cutbacks is health and education we cannot even guarantee a child with Downs will get the extra support he or she needs. I've been professionally involved when education and health authorities have been arguing the toss over which is responsible for funding support.
Downs children are pictured as being happy and affectionate but later in life they are more likely to suffer from severe depression.
Most families need two working parents to survive but when there is a child with SN and a protracted childhood it is virtually impossible for the principal carer to return to work.
No one can make the decision of whether one cope with Down's syndrome or other SN except the mother/parents.

Absolutely, the poem 'First they came ...' comes to mind.

Why? That poem refers to something completely and utterly different. What would make you compare the two?

If her aim was to give a more accurate view of Down Syndrome then that was a valuable aim. But she failed to achieve it as she didn't talk about the associated physical health risks or early onset dementia. She added to the problem of misinformation rather than using her privileged platform to properly address that problem.

Not currently watched g the programme.

I wonder, though, about how this issue looks to someone born with a disability. How would it feel to have loads of people saying 'sorry, I would not choose to have a child like you'. Wouldn't that make you feel that your life was less valuable than a 'normal' person's?

What would a world without Downs Syndrome and other screenable genetic conditions be like? Are we really saying it would be better? Isn't that tantamount to saying that people with Downs etc aren't, on balance, worth it?

FWIW I think the protestations on this thread about the wealth of the presenter are missing the point, as are the criticisms of her own emotional investment and the hostility to her Christian beliefs. The real ethical issue is whether the lives of disabled people are worth the same as non-disabled people - whether they be actual or potential or notional.

Absolutely right niminypiminy

AnneEyht wrote "The biggest issue that was totally ignored on this programme is that someone in the family has to become a carer. This has a huge impact on the life of that person. And it is a lifelong responsibility. For people without the money to hire in help it is a huge personal sacrifice to make, and often you are not only making that choice for yourself but for your other children too."

That's really spot on and hugely important.

The real ethical issue is whether the lives of disabled people are worth the same as non-disabled people - whether they be actual or potential or notional.

I'm not sure I agree with this....but even if we take it as given, presumably that is an ethical issue for every pregnant woman to grapple with....which wouldn't be an argument for denying her the right to information and knowledge about her own pregnancy. A woman should still be entitled to prenatal testing if she wishes to have it. It doesn't force her to make a particular decision about the outcome.

I'm amazed that such a biased film was allowed to be made. Sally Phillips is not pro choice. It was a propaganda movie during which she argued that screening should not happen and that Downs is "benign". And I suppose you would start to believe that when everyone you saw with Downs was either very young and cute or "high functioning" and in their 20s

Where were the people with Downs at the low functioning end of the spectrum? The people in middle age?

And why the upset and hand wringing about why people with Downs aren't consulted about the NIPT test and whether it should be rolled out across the NHS?

They don't have the right to an opinion Sally. And neither do you.

It's not about whether the world would be a better place with or without disabled people. It's about whether individual families can cope with a child, and later an adult, with disabilities. The impact on the world is abstract and hard to define, the impact on families is very real and tangible. Some families will cope or even enjoy the challenge, others will struggle. Families have a right to choose.

What of the lives of the carers?

I thought it was an awful programme. I was expecting it to be so much better.

Giving people information about their foetus isn't wrong.

I only know one family with a child with DS. She is very very unwell. Her life is an endless whirl of operations and emergency hospital dashes. It's horrible.

Sally Phillips is an evangelical Pollyanna.

JinzMonsoon Well said.

My BIL had downs he couldn't go to the toilet by himself even in his 30s and he couldn't talk, looking after him made my MIL an old woman before her time. It's a very difficult subject

I had a double amnio at prof Nicolaides clinic after a 1:5 (I think, might have been 1:3) risk of DS, Edwards or Patau's because I didn't think I could look after a disabled child. In the end one of my babies had a genetic defect which was not detected by the test which has caused enormous pain to them and the family as a whole. I'm also an atheist.
However - I loved the documentary and found it very moving. I don't think Sally purported to be doing anything other than speaking from personal experience. I also don't think it's unusual to find late termination upsetting conceptually either.

Creamcrackerunderthesetee

I know what you mean. I am disabled and some of the conditions I have been diagnosed with are genetic. I think it is sad that other people see your life as a tragedy should have been prevented. That's not what I feel about it at all. You may say I am biased about this but it is my life at the end of the day.

I think it should obviously be no one but your own decision whether or not to continue with a pregnancy but maybe if society was a better place for disabled people some people would make a different choice.

One of the most biased pieces of television I have ever seen!

I understand her emotions on the subject but she was so not the right person to make this programme. She has made the whole subject a personal attack on her and her son.

All the people with Down's syndrome featured were at the mild end of the spectrum and doing really well. What about the more severe end of the spectrum? The years of multiple hospitals stays, operations, stress...
What about the fact that many other non-genetic conditions are also screened for during pregnancy and subsequently terminated for? Severe heart defects, spina bifida... Some would survive and do reasonably well following the most advanced surgical techniques. But does that mean parents are wrong for deciding not to go down that road? Of course it doesn't.

I felt one of the major points that wasn't really explored properly is that it's not just about the unborn child. It's about the parents and their families. It's their choice too. For some parents it's hard enough bringing up any child, lack of family nearby to help out, juggling work/school etc.

The way she described amniocentesis was ridiculous as well. Made it sound far more dangerous than it is. The risk to the baby is very minimal.

It was a very manipulative piece of reporting. She clearly has some complex issues going on in her head and this sounds unkind but I got the sense that she is bitter that the NIPT wasn't available to her. One wonders if it had been an option for her then would she of taken it, since she did opt for the standard screening. Her 1:1000 result demonstrates how unreliable it can be and the need for better accuracy.

Choice is paramount in this debate. She loves her son unconditionally and he has a lovely life and is thriving. But she did opt for screening. Would she have terminated if the screening had led to a Down's syndrome diagnosis? Perhaps she feels a great amount of guilt about this? We can never know. No one really knows how they would deal with the diagnosis until they are actually in that situation but no one should be made to feel guilty for their choice.