Ship of Fools: A World Without Down's?

Thread: A World Without Down's? Board: Oblivion / Ship of Fools.

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Posted by alienfromzog (# 5327) on :

BBC Two documentary

(Apologies to non-UK shipmates who can't see this)

Any thoughts, reactions, insights?

AFZ

Posted by lilBuddha (# 14333) on :

It is also an hour long. Can you give a synopses for those who do not have the time/desire to watch?

Posted by lilBuddha (# 14333) on :

Here is a rundown

Posted by Golden Key (# 1468) on :

Thanks for both the links. I read the second one.

I've never been pregnant, so I'm looking at this from the sidelines. I'd thought this might be about the ethics of fixing the genetics of Down's, which is one kind of problem, and we've discussed that before. The article is about how valuable people with Down's are (like the author's son), and against pressuring women pregnant with a child with Down's to abort. And that's another kind of problem.

The author quotes what many women have been told by their doctors--really ignorant, insensitive stuff that I'd hoped had mostly gone from the world, at least from medical folks.

I think much depends on what the woman feels she can cope with, whether she has the emotional, mental, personal, and financial resources. And, if she decides she doesn't, whether she's up to carrying the child to term and giving it for adoption. Not trying to push anyone in any of those directions. Just looking at possibilities.

If someone comes up with a way to prevent Down's, or to fix the fetus before birth, ISTM that people with Down's should be consulted for their opinions on whether it's a good idea. Probably mostly those who are high-functioning; though maybe lower-functioning people could be consulted, if they were simply asked how they like their lives.

There was a '90s TV series called "Life Goes On". The family's teen-aged son, Corky, had Down's (as did the actor), and was pretty high-functioning. Down's and its difficulties came up frequently (e.g. school, driving, marriage, pregnancy). His parents did volunteer support counseling for pregnant and new parents, facing dealing with a child with Down's. IIRC, one of those parents had a brand-new baby. He'd been thinking of giving the child up. Then he found out that some adoptive parents are quite happy to get a child with Down's. And he wondered why *he* was ready to give his child up, and shifted his perspective.

Don't have any answers. [Votive]

for anyone dealing with any of this.

Posted by BroJames (# 9636) on :

Whether she has a supportive partner/husband may also be a key factor. For many people raising [a] child[ren] is an at least two person business.

Posted by Golden Key (# 1468) on :

BroJames--

Yes. Friends who've told me about terminated pregnancies (unrelated to Down's) said either that the guy wouldn't be involved, or wasn't suitable to be a father.

Posted by L'organist (# 17338) on :

While there aren't differing 'degrees' of Down's (you either have it or you don't), just as in the general population there is a wide variation in the degree of learning difficulty each individual has.

As touched on in last night's documentary, once it had been established which was the best way to teach those with Down's to read, many people with Down's are more than capable of completing secondary education - some go on to get a degree - and the only thing that makes them different from the population at large is the typical eye shape and other facial characteristics.

BUT you have no way of knowing whether your Down's child is going to fall into the category labelled 'high functioning' or not. Many moons ago I worked with a girl who had a DS brother who read well, was a whizz at Maths, and who set up a new division within the family business (plant breeding and commercial growing); so when sister discovered she was expecting a DS child she wasn't unduly fazed. However, her child was very different: severe heart abnormalities, profound sleep apnoea, severe learning difficulties; he also put paid to the lie that 'people with DS are predisposed to be happy'. By the age of 21 he had a vocabulary of fewer than 30 words and was in and out of hospitals all the time with heart issues and infections.

While yesterday's film was uplifting and inspiring, it might have been more balanced if at least a small segment could have honestly faced the issues faced by those whose DS child is never going to be able to fend for themselves and who will always have profound physical problems.

As for the question of whether or not DS will cease to be, while it is very wrong of society to see a whole group of people as somehow lacking and not having the right to exist, equally it is unfair to expect parents to take on a disabled child who may require 24 hour a day, 7 days a week care when the evidence is all too clear that such parents face a daily battle to get the help and support to which the law says they are legally entitled. And society must accept that everyone doesn't have it in them to be a carer, and nor should it expect people to have to do so.

Posted by Twilight (# 2832) on :

Great post, L'Organist. One other thing that I think many people don't consider is that the more low functioning people with Downs will need a certain amount of care all their lives, even beyond the parent's death. This can be a huge worry for parents as they approach their own final years. Even if they have saved every extra penny all their lives with a view to their adult child's care, there are the questions of how it should be dispersed and if there has been divorce and remarriage then how much can the step-parent be trusted to care for the child after the biological parent's death?

Posted by Brenda Clough (# 18061) on :

And there is a burden placed upon other members of the family. My sister has an LD daughter. Her great worry is that when she passes, the other two daughters will be left with the burden of the sister, who is a charming woman but shall never be able to support herself.

Posted by Belle Ringer (# 13379) on :

I took glass class from a man who didnt marry because he would need to care for his brother who couldnt talk. Very nice but hopelessly incompetent.

He lived in a place with active social housing. He said in a just a few away he would not had had anywhere the same amount of help.

His brothers didnt got to visit him. They didnt want to be trapped in that life.

hard choice to put a child

Posted by Lamb Chopped (# 5528) on :

But this is an argument for the whole society (state, nation, whatever) taking responsibility, rather than leaving individuals to struggle to do it all (or mostly) on their own. The situation is parallel to that of the severely mentally ill, or severely physically disabled, or frail elderly. Any of these folks can overwhelm an individual caregiver, or sometimes a whole family. Yet since most of them were not born that way, abortion was never considered a proper way of dealing with them (and rightly so). I am very disturbed by the idea that it's okay to treat Down's syndrome people differently, simply because we can detect it before birth.

(I've been reading a sci-fi novel about "retroactive abortion," where young adults can be terminated if their families find themselves overwhelmed. If such a thing were ever possible, would we do the same for the frail elderly/severely mentally or physically disabled in general? I suspect so, as it would remove the only obstacle to treating them like DS children. And the laziness and selfishness of society-as-a-whole is a hard force to overcome. Forcing the whole burden on to a single individual or family is much easier.)

Posted by Boogie (# 13538) on :

Screening of embryos is going to affect almost every condition soon. They'll be screening to choose blue eyes and blonde hair etc too, I imagine.

It's a subject which needs tackling - where is the line to be drawn?

If all differences are screened out we'll end up with a world full of sameness!

Posted by Soror Magna (# 9881) on :

quote:
Originally posted by Lamb Chopped:
But this is an argument for the whole society (state, nation, whatever) taking responsibility, rather than leaving individuals to struggle to do it all (or mostly) on their own. ...

I totally agree, but prospective parents have to consider the current environment, not just their hopes of what the future might bring. The thread title is a world without Down's. It's much easier to have an ethical conversation in the first world, where we have the structures and resources to take (still widely varying levels of) responsibility. Lots of countries don't even have basic human rights for people with disabilities.

Right now, I'm searching for an affordable caregiver for a friend whose government-supplied home care has been cut back to 6 hours/month. (I couldn't do all my housework in that time, never mind doing it from a wheelchair.) His parents are not well off and live some distance away, they really don't want their daughter to give up her career to care for him, and they are beyond terrified of what will happen to their son when they are gone. [Votive]

Posted by Lamb Chopped (# 5528) on :

Yeah, I know. I'm also perched in a situation where if someone I loved became in need of a caregiver, I'd basically have to give up any career of my own, stay home and go on government assistance, what little we could get. We couldn't afford to pay anyone.

My husband is nearly 70 and I have three other family members with cancer and/or kidney failure.

Posted by Lucia (# 15201) on :

quote:
Originally posted by L'organist:
While there aren't differing 'degrees' of Down's (you either have it or you don't), just as in the general population there is a wide variation in the degree of learning difficulty each individual has.

2 - 4% of people with Down's Syndrome have the mosaic variety where some cells have the extra chromosome 21 and others don't. The physical effects tend to be related to the proportion of normal cells to abnormal ones in the body, which can vary between individuals. So yes there is a sense in which someone has Down's or they don't, but for these people there is some element of degree about it.

Posted by Schroedinger's cat (# 64) on :

Our youngest was scanned and had some problems (talipes was the part that persisted). We were offered a test as he had a chance of Downs.

We didn't take the test. We wouldn't have done anything different anyway. He was OK (apart from the talipes), and is now a wonderful young man.

Posted by Aravis (# 13824) on :

The narrator of the programme was well off, had a large house, plenty of support, and was very committed to planning her life around her family. This is not the case for everyone.
I fully support effective screening for disability, of any sort, alongside plenty of information - positive, negative, short term, long term - about the condition, to enable the parents to make an informed choice. I don't believe people should be pushed into abortion for Downs Syndrome but I do believe they should be able to take that option without feeling guilty.
I am speaking from 15 years of professional experience in social/health care, plus the experience of close friends, by the way.

Posted by Golden Key (# 1468) on :

Lucia--

Thanks for the explanation about mosaic Down's. I knew it existed, but not why.

Posted by Stoker (# 11939) on :

I watched the program and have also been interested in the reviews from the mainstream media and forums like this. ISTM that many folk have not only missed the point of the program, but have ironically demonstrated that fact by their response. The big elephant in the room that Sally Phillips is addressing is the very fact, as many replies above demonstrate, that in society we value, and therefore judge, people by what they appear to contribute – and usually in a financial sort of way.

This is contrary to the grace of God as revealed in the Gospel of Jesus Christ.

It seems incongruous that we therefore single out Down’s and have somehow decided that people with this condition must prove that they are worthy of life. I guess from the comments above, there is some sort of subconscious cost benefit analysis that we undertake as a society.
So why is Downs singled out? This was demonstrated by a part of the program where Sally spoke to a so called advice charity for expectant mums who had been given the diagnosis. When asked about what they’d tell an expectant mum who asked what managing the behavior of a kid with Downs might be like, the so-called advisor went straight to abortion. WTF? Since when do we kill kids with behavioral issues?
So, patronise Sally Phillips if you want to - with her ‘passion’, ‘idealism’, apparent wealth, family support and positive attitude. But I would suggest that in doing that you are using a ad-hominem mechanism to minimise the points she makes in the program and thus you give yourself permission to agree with a form of Eugenics.
The logical conclusion of cost benefit analysing kids with Downs in utero is endless – who’s next and why? I could think of several groups of people who cost society more and contribute less; Genetically predisposed to addiction?, maybe 50% of pregnancies in deprived areas? Expectant mothers with IQ < 80? - as they are not very ‘high functioning’.

Discuss

Posted by North East Quine (# 13049) on :

I have no TV licence and cannot therefore in good conscience watch the programme.

But I do have practical experience of a similar condition. When I was 20 weeks pregnant with our third child, we were told that our baby was a dwarf. We knew, of course, that conditions such as Downs existed and were a possibility, but it had never occurred to me that I might find myself pregnant with a dwarf. In fact, when I was told, I thought the doctor was just saying "small for dates." It took a while before the penny dropped that "dwarf" was actually a medical diagnosis.

We were immediately offered a termination, which we refused. But, like Downs, dwarfism is a disappearing condition. We were the first couple most of the health professionals had encountered who opted to continue with the pregnancy. As a result, we were heading into uncharted territory.

If we seemed upset, we were offered an abortion. So we decided it behoved us to be very cheerful ("We don't care if he is a dwarf, so long as he's Happy!") This led our medical professionals to conclude that we were either In Denial or just Plain Stupid.

All the doctors, midwives etc were brilliant, I cannot fault our medical care, which was first class throughout. But we had many questions and they had few answers. As fewer Downs babies are born, I suspect that parents who opt to continue with a pregnancy will find themselves in the situation that we did; that medical knowledge of the management of such pregnancies will shrink.

Sadly for us, our diagnosis changed from achondroplasia (classic dwarfism, with a normal trunk, but short arms and legs) to thanatophoric dysplasia (where the rib cage is also affected, thus preventing the heart and lungs from growing) and though I managed to carry our son to full term, he died in utero and was stillborn.

Continuing the pregnancy was the right choice for us,but I would fully support any parents who chose to terminate. We were ideally placed to have a child with dwarfism (solid marriage, supportive family and friends, solvent) but even so I was overwhelmed by the prospect, especially when we were being advised that we would have to reduce our working hours to care for our child whilst simultaneously working longer hours to pay for adaptations to our home etc.

While I was pregnant we read that dwarfism isn't so much a disability as an alternative lifestyle, and we were all set to embrace that alternative lifestyle, with very little concept of what that might entail. I suspect that parents who are given a diagnosis of Downs are as bewildered and confused as we were.

Posted by Golden Key (# 1468) on :

NEQ--

Sorry you went through that.

Posted by North East Quine (# 13049) on :

Thank you Golden Key. We were blessed by much kindness and compassion during the pregnancy. If I could go back in time and swap David for a different pregnancy with a different baby I would not do it, because he was our son, just as he was and we did and would have loved him very much.

In the linked article, Sally Phillips says

quote:
A foetus with a disability can be terminated right up until the moment when labour starts.

When I was 34 weeks pregnant I was being monitored for a possible C-section, as it was felt that David wouldn't survive labour / birth. However, his heart rate wouldn't stabilise enough. From that point on, anything the hospital did to induce birth would effectively have ended his life. In the event his heart stopped at 39+6, and I had an induced stillbirth at 40 weeks.

Comments, such as Sally Phillips', suggest that very late abortion is the choice between an aborted baby or a living baby. This is not necessarily so. It can be the choice between an late abortion or a later natural stillbirth. I think that it is disingenuous to ignore this.

Posted by Golden Key (# 1468) on :

NEQ--

I'm surprised that a pregnancy can be terminated up until labor. AFAIK, that would be illegal here, regardless of whether or not the baby had a disability.

Posted by North East Quine (# 13049) on :

Abortion would be the result, not the prime reason. If e.g. my blood pressure had started going through the roof, and my own health was being compromised, then the hospital could have induced labour, knowing David wouldn't survive labour. I think (but don't know) most very late abortions involve this sort of scenario; a baby deemed non-viable and a threat to the mother's health.

The Sally Phillips quote suggests that very late abortions cost the life of potentially viable babies. I don't think that's the case.

Posted by Gee D (# 13815) on :

Thank you NEQ for your recent posts. Madame had several miscarriages and one still-birth. Much as we love Dlet, we love these others as well. Just as you do. Sadly, our advice after Dlet was that to try for another would have risked Madame's health far too seriously, so we resorted to the most secure methods available to ensure that that did not occur.

None had Downs, but had there been that diagnosis with any, we would have continued with the pregnancy regardless. OK, we were in a position to afford the special care, but we also strongly support the provision of that care to those who can't afford it along with any other support that may be necessary. For example, not just direct care for that child, but support for others in the house. How that care can be given is probably the proper topic for this thread.

Posted by North East Quine (# 13049) on :

Yes, GeeD, I agree. I note that Sally Phillips says:

quote:
I used to value independence. I now wonder if independence isn’t a little lonely and if interdependence isn’t where it’s really at.
Sometimes I’m ashamed I can’t manage my kids without my parents, but other times I’m just glad we’re so much closer.

Not everyone has available, healthy parents to help out, or the sort of family / friend network that allows them to be interdependent. Surely our goal should be to provide those sort of links and interdependencies within society to support parents?

Posted by Gee D (# 13815) on :

That's the sort of thing I was getting at (unable to get the programme from here to have heard what she says). We could do that ourselves, many can't.

We have some friends living nearby. The sons, the elder in Dlet's year, the younger 4 years behind) are bright and capable. Sadly, their elder sister is severely limited. She's unable to speak and shows little recognition of what is said to her beyond her name. The limit is not words but tone of voice. They both say that had they had the choice, they would not have terminated the pregnancy, she is their child and entitled to love and affection from them - and she shows that in return.

Posted by Jengie jon (# 273) on :

If all babies born were viable then there would be no need for organisations such as SANDS.

Jengie

Posted by Jengie jon (# 273) on :

Totally different reply so double posting.

It is relatively easy to provide paid for services (whether personally paid for or paid by the government). It is a lot harder to create an interdependent society where all are integrated so that this provision arises naturally for all.

The second is the ideal, but when governments assume that removing the first will result in the second they are in cloud cuckoo land.

Jengie

[ 11. October 2016, 11:31: Message edited by: Jengie jon ]

Posted by Stoker (# 11939) on :

I think what Gee D posted shows the point. We have been involved in a UK group called prospects which is essentially aimed at integrating adults/ young people with LD into Churches and associated support. I have regularly seen a guy who you might look at sitting on the floor banging a tambourine for the whole meeting get up and use a speech machine to give a word to the group. That is a humbling moment, and made me realise that we can't judge how much people take in and understand. All people are made in God's image and what a damning incitement on society that we choose who is worthy of life or not.

The thing about terminating unborn children with downs is true. It is legal as downs is classed as a severe disability. They can be terminated right up to full term. Shocked?

Posted by Golden Key (# 1468) on :

NEQ--

quote:
Originally posted by North East Quine:
Abortion would be the result, not the prime reason. If e.g. my blood pressure had started going through the roof, and my own health was being compromised, then the hospital could have induced labour, knowing David wouldn't survive labour. I think (but don't know) most very late abortions involve this sort of scenario; a baby deemed non-viable and a threat to the mother's health.

The Sally Phillips quote suggests that very late abortions cost the life of potentially viable babies. I don't think that's the case.

Yes, I know that sometimes it comes to what you mentioned in your first paragraph, and nothing else can be done, except lose both the mother and the baby. Some of the hyper anti-abortion folks here are against even that, and have been very nasty about it in public. People who know better have tried to explain the extreme circumstances, but I'm not sure it made any difference.

I should've been more clear--it's Sally's quote that shocked me. She seems to be right in line with the folks I mentioned.

Posted by alienfromzog (# 5327) on :

quote:
Originally posted by Golden Key:
NEQ--

quote:
Originally posted by North East Quine:
Abortion would be the result, not the prime reason. If e.g. my blood pressure had started going through the roof, and my own health was being compromised, then the hospital could have induced labour, knowing David wouldn't survive labour. I think (but don't know) most very late abortions involve this sort of scenario; a baby deemed non-viable and a threat to the mother's health.

The Sally Phillips quote suggests that very late abortions cost the life of potentially viable babies. I don't think that's the case.
Yes, I know that sometimes it comes to what you mentioned in your first paragraph, and nothing else can be done, except lose both the mother and the baby. Some of the hyper anti-abortion folks here are against even that, and have been very nasty about it in public. People who know better have tried to explain the extreme circumstances, but I'm not sure it made any difference.

I should've been more clear--it's Sally's quote that shocked me. She seems to be right in line with the folks I mentioned.

What you're referring to is abhorent. And one of the reasons I don't like a lot of pro-lifers.

However, I disagree with your interpretation of Sally's position. What I think you are seeing is this (obviously I am paraphrasing with all relevant caveats):
I look at my son and all that he is. I know how much he loves and is loved. I know how much he can do an contribute. Then I look at the law in this country which says that my son has a disability that is so severe, it is allowable for him not to be born when it would be otherwise illegal to terminate at that stage. So severe.

AFZ

Posted by no prophet's flag is set so... (# 15560) on :

In Canada as legalised "doctor assisted death" had become legal, the public debate appears to have shifted toward quality of life and "life worth living". Which sounds ominous to me as turn on "Lebensunwertes Leben" (life unworthy of life), the euthanasia program in Germany staring ~1939.

Posted by Golden Key (# 1468) on :

AFZ--

And how are you interpreting Sally's remarks, please?

Posted by alienfromzog (# 5327) on :

quote:
Originally posted by Golden Key:
AFZ--

And how are you interpreting Sally's remarks, please?

See my comment above but basically:
Look at my child - how can you say this is a severe disability that means he would have been better off not born?

I also think the reference to "A life unworthy of life" is pertinent. Thanks no prophet. It is horrific to me, the role the medical profession played in the pre-war eugenics and the holocaust.

AFZ

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