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» Ship of Fools   » Ship's Locker   » Limbo   » Purgatory: "Tentative pregnancy"/prenatal euthanasia (Page 2)

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Source: (consider it) Thread: Purgatory: "Tentative pregnancy"/prenatal euthanasia
tclune
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# 7959

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quote:
Originally posted by sharkshooter:
So, we pick and choose what lives to value? I thought the Christian answer was that all human life had value; none more so than any other. At least, that is what I believe.

But saying this is deciding which life to value above the others. When a couple is faced with the question of whether to raise a severely handicapped child or not, they are making a decision that will determine the course of all lives involved. Pretending otherwise is just dishonest.

Some people may be able to find value and fulfillment in a life devoted to caring for a severely disabled child. They may have personal circumstances that allow them to plan for the child's well-being after they themselves are too old to do so. Such people are to be commended.

But those who do not find themselves in a similar circumstance are not to be condemned, which is exactly the invasive and unloving judgement that the church places upon such people with the casual disregard that one associates with Pharisees.

quote:
God grants us life. Who are we to decide that He made a mistake?

Were God the only one who was carrying the fetus to term and devoting His existence to the child's care and feeding after the birth, I would find this point valid. As it is, it just strikes me a callous.

--Tom Clune

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Josephine

Orthodox Belle
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quote:
Originally posted by RuthW:
She knows her life is different from other people's, and though her parents have done a fabulous job of helping her to love and accept herself, I get the impression that if given the choice, she'd rather be like other people.

With a few exceptions (in particular, some Deaf and some people with autism spectrum disorders), I think most people with disabilities would choose not to be disabled if that choice were available. But the choice offered by eugenic abortion is not "disabled or normal," it's "disabled or dead."

quote:
But we've had two posts already about how great severely disabled people's lives can be, and while they can be great, I think it's dishonest and mean to talk as if it's all sunbeams and daisies to live with severe disabilities.
There is a bit of glurge well known among parents of children with disabilities, called Welcome to Holland. Some parents with special needs children find they relate more to Welcome to Beirut or Holland Schmolland. The Holland metaphor, as this article makes clear, forces parents to deny their feelings of anger, guilt, frustration, and pain. To pretend that it's all sunbeams and daisies.

And as you say, RuthW, it isn't. Littlest One is mildly to moderately disabled, and along with his disabilities, he has astonishing gifts. And even with him, there are days life feels a lot more like Schmolland or Beirut than Holland.

So, yeah, we shouldn't pretend that all people with disabilities have joy-filled lives, that they are happy, well-adjusted, and at peace with themselves and the world. None of that may be true.

But neither is it true that they'd be better off if they'd never been born.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Josephine

Orthodox Belle
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quote:
Originally posted by tclune:
When a couple is faced with the question of whether to raise a severely handicapped child or not, they are making a decision that will determine the course of all lives involved. Pretending otherwise is just dishonest.

Unfortunately, eugenic abortion is not just about severe disabilities. It is also about cleft palates and dwarfism and hereditary Deafness.

quote:
But those who do not find themselves in a similar circumstance are not to be condemned, which is exactly the invasive and unloving judgement that the church places upon such people with the casual disregard that one associates with Pharisees.
Are you suggesting that the only choice, if someone thinks that caring for a disabled child would be more than they can bear, is to kill the child, and then comfort them while they mourn the death, reassuring them that they can always try again, and maybe next time the child won't be defective?

I don't think that's much of a choice, frankly. I think it's horrific.

If the parents don't have the resources to care for the child, then we, as a society, damned well ought to help them care for the child. If they need respite care, we ought to provide respite. If they need medical insurance, or counseling, or home health aides, they ought to have it.

Because killing children whom we happen to find inconvenient is monstrous.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Lamb Chopped
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I think one of the problems with amnio is the same problem we have with all new knowledge--you can make either a good or a bad use of it, and so the new info always opens up new realms of possible good and evil. (Pls note I'm not here designating what is evil!)

I don't think I could wish that amnio had never been invented--we used it (at eight months) to determine whether my son's lungs were developed enough for him to be delivered safely. But it creates more opportunities for moral dilemmas. AS does practically every other new thing.

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

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Lamb Chopped
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In reply to Josephine's latest, I'd like to add that as far as I recall, nobody here is condemning the parents who make the decision; they are simply judging that the situation itself is an evil, and the decision a bad one, though perhaps the only one the parents thought they could make.

I can see how certain parents, pushed against their limits, might opt for eugenic abortion, seeing no other choice open to them. They know they could not raise such a child alone, and they know that if the child is born, they will certainly be raising it "alone," because the necessary social support systems simply aren't there or aren't adequate. So they opt for eugenic abortion.

I would certainly not call such parents monsters or refuse to have dinner with them. But this kind of desperate situation ought not be allowed to exist in the first place. Which puts us right back to improving human care programs, and learning to love one another.

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

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FCB

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quote:
Originally posted by tclune:
Some people may be able to find value and fulfillment in a life devoted to caring for a severely disabled child. They may have personal circumstances that allow them to plan for the child's well-being after they themselves are too old to do so. Such people are to be commended.

But those who do not find themselves in a similar circumstance are not to be condemned, which is exactly the invasive and unloving judgement that the church places upon such people with the casual disregard that one associates with Pharisees.

I think a corollary to Godwin's law that any Christian who invokes the Pharisees loses the argument.

But the real question is why we should extend this non-judgemental support only to parents whose children's disabilities are diagnosed prenatally? Isn't a child who is diagnosed with a disability 6 months after birth just as much of a burden to parents as one that is diagnosed 6 months prior to birth?

I don't think we need to make being disabled sound like a constant joy in order to criticize the practice of aborting fetuses for the sole reason of their being disabled. Would we hesitate to criticize parents who aborted their children for the sole reason of their being female (which in many cultures is as sure a gaurentee of a miserable life as any disability)?

FCB

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Agent of the Inquisition since 1982.

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Laura
General nuisance
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tclune:

Is it your contention that the lives of the couple are endangered by raising a disabled child? Or that to suggest that aborting for defect equals valuing the couple? I'm confused. Or is it your contention that the life of the couple ought not to be disrupted by having to raise a child with a severe defect? (This latter is certainly a position widely held, but I want to be clear on what your contention is).

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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm

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Laura
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I guess the point isn't whether amniocentesis is bad (as Lamb chopped points out, it very much has its uses) -- I know at least two couples who had it simply to be informed about any disabilities their child might have. One of them has a six year old with Down's syndrome, so they weren't just blowing sunshine.

It's more the amnio plus assumption of abortion if defect that seems skewed in terms of the way the medical options are presented. If through amnio, I should find out that I was expecting a child with something like herditary deafness, I wouldn't consider termination for two seconds, but would go about finding out about supporting deaf children and what the best early enrichment is for deaf children etcetera. I'm not sure what I would be "informed" about my options, though I'd be very interested in what the standard advice is. Is abortion offered readily for minor defects? Or do people just choose it?

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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm

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Josephine

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quote:
Originally posted by Lamb Chopped:
I would certainly not call such parents monsters or refuse to have dinner with them. But this kind of desperate situation ought not be allowed to exist in the first place.

To be clear, I was not calling the parents monsters. The situation is monstrous. And the suggestion that condemning the situation is invasive, unloving, judgmental, and Pharisaical is also monstrous.

quote:
Which puts us right back to improving human care programs, and learning to love one another.
Exactly.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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tessaB
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I really don't think that there is a completely right or wrong answer here. I do know that I thank God that autism is not able to be screened for ante-natally so I was never put in this position with my two boys.
A friend had amnio with her second child with the absolute stated intention of aborting if there was any damage. This seems horrifying at first until you know that she was already caring for a five year old daughter with Angelmans Syndrome. She knew her limitations (and I have to say that they are a lot higher than mine) and knew that there was no way she could cope.
Incidentally there does seem to be a disproportianatly high number of single mums in my boys' school. Does anyone know what the divorce rate is among parents of disabled children? Is it higher than average because it seems to be.

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Lamb Chopped
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Uh--Josephine, I was agreeing totally with you--or trying to, anyway. [Ultra confused] [Hot and Hormonal]

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

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Josephine

Orthodox Belle
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quote:
Originally posted by Lamb Chopped:
Uh--Josephine, I was agreeing totally with you--or trying to, anyway. [Ultra confused] [Hot and Hormonal]

Oh. My bad. Sorry. [Hot and Hormonal]

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Presleyterian
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quote:
Laura wrote to tclune:

Is it your contention that the lives of the couple are endangered by raising a disabled child? Or that to suggest that aborting for defect equals valuing the couple? I'm confused. Or is it your contention that the life of the couple ought not to be disrupted by having to raise a child with a severe defect? (This latter is certainly a position widely held, but I want to be clear on what your contention is).

I can't speak for tclune, but his or her posts demonstrate for me why these tremendously difficult and heart-rending decisions are best left in the hands of parents, rather than legislators. If I may, I have a question for those who have spoken so very, very eloquently against "eugenic abortion." Some of you may well be against legal abortion in any circumstance, but for those of you who aren't, do you view an abortion motivated by the in utero diagnosis of serious disabilities to be "worse" -- more troubling morally, less justifiable legally, etc. -- than an abortion undertaken for other reasons?
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Presleyterian
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# 1915

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I should add that I'm asking the question because -- at least from the short Amazon excerpt of the book Laura cited in her OP -- the author appears to suggest that an abortion by a woman who doesn't wish to be pregnant and whose contraception failed is somehow different from an abortion when a couple desperately wants a baby, and yet terminates the pregnancy after finding that the child is severly disabled. And by "different," I'm sensing that the author finds the latter category substantially more troubling -- which came as a surprise to me.

[ 03. August 2005, 02:49: Message edited by: Presleyterian ]

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Foolhearty
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Part of the issue here, I think, is not just that we have a technology that can predict some disabilities, plus the usual ethical lag. (First we learn how to do something, then we begin the debate over whether we should.)

The issue has two other dimensions we may not be taking into account, I think.

Part of the problem is that ordinary human existence, at least as lived in the so-called "developed world," has become so complex that even people just a little below average in mental acuity may need support in managing. I've had some experience trying to help so-called "borderline" folks learn how to cope with credit, bus schedules, and checking accounts, or even, Heaven help us, their phone or utility bills.

People in this "borderline" range may have fared better in a simpler, agrarian society. They'd have been made occasional fun of, taken advantage of, just as they sometimes are now -- but they'd have been able (if not physically handicapped) at least to scratch out a living and to contend with most of what was required of them.

That's less and less possible. Good grief, I have a graduate degree and I can hardly understand my electric bill. And don't get me started on cell phone contracts.

This, I suspect, leads to the second part of the issue: our societal definition of "normal" seems to be shrinking, including a narrower and narrower range of appearance, behavior, and intellectual functioning.

A chicken-and-egg question, perhaps. But is the "eugenic" sort of abortion simply a natural, if frightening, response to the recognition that the world we live in seems to require ever-more exacting mental abilities and ever more-exacting standards of appearance and functioning?

If it weren't bedtime, I'd drag out my OED and look up "normal" to see its history.

I rather suspect that a good many people regarded as "disabled" today were taken for granted as "just more folks" in 1305.

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Fear doesn't empty tomorrow of its perils; it empties today of its power.

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Josephine

Orthodox Belle
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quote:
Originally posted by Presleyterian:
Some of you may well be against legal abortion in any circumstance, but for those of you who aren't, do you view an abortion motivated by the in utero diagnosis of serious disabilities to be "worse" -- more troubling morally, less justifiable legally, etc. -- than an abortion undertaken for other reasons?

Yes, I do think that eugenic abortions are worse than other abortions, because I think that eugenics is an unmitigated evil. How can we say that a child with spina bifida, or a cleft palate, or an autism spectrum disorder, would be better off never having been born? And what happens when we start extending that notion? It's a slippery slope we've skidded down before, and the result was the Holocaust.

Part of remembering the Holocaust is remembering how we got there. In large part, we got there through the eugenics movement. As a society, we decided that some people were burdens to society, and that we should have fewer of such people. As we accepted more and more the dehumanization of the "feebleminded," we began to see others as less than human as well, and we went from thinking that we should encourage marriages between "the best and the best" to thinking that we should eliminate the unfit from the gene pool.

And that's what we're doing with eugenic abortion. This online archive provides plenty of history. There's more out there where this came from.

Eugenics is ugly. It's evil. It's wrong. To think of it as a compassionate service for parents is like dipping rat poison in chocolate. It might be more palatable that way, but it's still poison.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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birdie

fowl
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quote:
Originally posted by Laura:
I'm not sure what I would be "informed" about my options, though I'd be very interested in what the standard advice is. Is abortion offered readily for minor defects? Or do people just choose it?

Well, this is what happened to us: I was having my routine 20 week scan when the sonographer suddenly started talking in a very soft voice, and calling me 'lovey' a lot, so we knew something was wrong! She told us that she was 'not happy' with what she could see in the brain and the spine, and that she was going to get us seen by a consultant.

We were then seen by the consultant and a midwife. The consultant went through the implications of what had been seen on the scan, as far as he could, as this was obviously early days. After talking about the implications for the baby, we were asked if we wanted to talk about termination. We said no and it was not mentioned again. We were referred on for further scans.

I don't know, of course, what would have happened next had we wanted to consider termination, but I was very impressed with the support we got once they knew that there was no question about our intentions.

b

[pesky punctuation]

[ 03. August 2005, 07:53: Message edited by: birdie ]

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"Gentlemen, I wash my hands of this weirdness."
Captain Jack Sparrow

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Petaflop
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Can I just thank everyone who has posted so thoughfully on this difficult thread? I don't have anything to contribute, but as late 30's and just married, it is giving me a lot to think about.
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Cedd
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My wife and I lost our first child due to an early, natural, miscarriage.

When we conceived again we were in our mid-30s and were offered an amnio. We said "no" as we had no intention of aborting the baby in any circumstances and did not wish to risk another miscarriage, however small the risk. The reaction of the hospital staff was evenly split between total disbelief at our stance by some and apparent respect by others. I certainly got the impression that very few people refused the test.

This does not further the debate but is merely my experience.

PS - We have a healthy daughter and my wife is now pregnant again - we will take the same decision for the same reasons.

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Cedd

Churchmanship: This week I am mostly an evangelical, catholic, orthodox with both liberal and illiberal tendancies. Terms and conditions apply.

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Foolhearty
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You know, I'm remembering now that I was "offered" amnio when pregnant with my now-over-18 daughter.

It was presented to me as SOP for "older" mothers (I was in my late 20s at the time). No risks to the child I was carrying were mentioned.

I do think it should be pointed out clearly to expectant parents that, if they're commited to dealing with whatever situation presents at delivery, they can refuse the test.

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Fear doesn't empty tomorrow of its perils; it empties today of its power.

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tclune
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quote:
Originally posted by Laura:
tclune:

Is it your contention that the lives of the couple are endangered by raising a disabled child? Or that to suggest that aborting for defect equals valuing the couple? I'm confused. Or is it your contention that the life of the couple ought not to be disrupted by having to raise a child with a severe defect? (This latter is certainly a position widely held, but I want to be clear on what your contention is).

My contention is that my Christian duty is to offer loving support to those who are in the situation of having to make such a difficult decision, whatever their decision is. The suggestion that no-one here is judging them simply does not appear to be supportable if people just read the posts. I am not arguing that anyone should choose to abort, any more than I'm arguing that they should choose to carry to term. It's just not my decision to make, and I'm not going to second-guess the decision made by another couple. The view that Christian love consists of brow-beating others into the choice that you fantasize you would make in their shoes just doesn't track with the scripture I read.

--Tom Clune

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Presleyterian
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quote:
Josephine wrote: Eugenics is ugly. It's evil. It's wrong. To think of it as a compassionate service for parents is like dipping rat poison in chocolate. It might be more palatable that way, but it's still poison.
Thank you, Josephine. I appreciate your taking the time to answer my question.

Then what about what some might call "eugenic contraception"? Is it similarly evil for couples to forego having children biologically after they learn, for example, that they both carry a gene that will make it very likely that any child they have will be severely disabled? What about parents who have one child with a genetically-linked condition who then decide on sterilization for themselves rather than risking a second child with a severe medical condition? Is that the practice of eugenics? Or it is only when abortion is involved that it becomes an evil act?

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Laura
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Presleyterian:

In response to your earlier, I think (with J) that abortion for no reason isn't targeting any particular class -- it may be moral or immoral (and whether it is or not is discussed elsewhere) but abortion for defect is specifically done by people who want a child badly, but not a damaged one. So it's explicitly eugenic (whatever one may think of that vis-a-vis society).

I think the decision not to breed falls into a different class. It's as eugenic in effect, I suppose, but requires an advance decision not to bring a life into being. There's no way of knowing whether that couple would ever have been able to bear their own children, because they chose not to try. To act instead during pregnancy means that, at least, a life is in being. Which seems like a qualitatively different situation.

tclune: There's no way to discuss the morality of a decision without making judgments. This is a debate board. If we took the approach that we must never appear to speak judgmentally of anyone who chooses one way or another, in order to be supportive, many of our most vibrant debates would wither away. Part of my concern with this particular debate is that it appears not to have been a public discussion at all, but developed into a quiet "normal" way of operating with neither a bang, nor a whimper. I have been struck as a pregnant woman, now of "advanced maternal age" of the seamless way in which all of these "options" are offered to me. It makes me wonder about a lot of things.

For me, I do not criticize those who made the difficult decision to abort a child with severe disabilities. Nor do I think (nor is anyone suggesting) that this is something that needs to be made illegal. It is and I think shall remain a matter for the couple and the doctors and their spiritual advisors.

I do think that the decision to terminate a child for any disability however small is misguided and wrong.

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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm

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HopPik
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# 8510

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quote:
Originally posted by RuthW:
the "they're always so happy" thing makes me want to puke.

I didn't say always. Try comforting a woman nearly fifty with a mental age in single figures, who has just realised that her mother is going to die. However long her parents lived, for her losing them was going to be like a child being orphaned.

However after several years in that job I'd seen nothing to suggest that the lives of my students were any less happy, or within their own horizons less fulfilled, than in the "normal" run of people. Life can be a pig for anyone.

I'm not an anti-abortionist (hate the term "pro-life", which of us isn't?). There are many good reasons why a healthy woman carrying a child might want a termination - including feeling unable to cope with a disabled man-child or woman-child for decades. I'm just glad the parents of my students hadn't gone that way.

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Never wrestle with a pig. You get dirty, and supposedly the pig enjoys it. G.B. Shaw

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chukovsky

Ship's toddler
# 116

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quote:
Originally posted by Foolhearty:
People in this "borderline" range may have fared better in a simpler, agrarian society. They'd have been made occasional fun of, taken advantage of, just as they sometimes are now -- but they'd have been able (if not physically handicapped) at least to scratch out a living and to contend with most of what was required of them.

Anyone who is under any illusion that it is somehow "easier" in more traditional societies should have watched African School on BBC4. I have been involved in a project looking at children with all kinds of disabilities in a similar setting, trying to work out how to diagnose disabilities accurately, persuade parents their children are educable, and find school places for them, and the story they showed of the fate of children with special needs in that setting is all too common.

Here is an interview with the special needs teacher of the primary school they are featuring.

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sewanee_angel
Shipmate
# 2908

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I found this article interesting.

At Amazon, you can read the first couple of pages.

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RuthW

liberal "peace first" hankie squeezer
# 13

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quote:
Originally posted by HopPik:
quote:
Originally posted by RuthW:
the "they're always so happy" thing makes me want to puke.

I didn't say always.
I'd have appended your name to the quotation if I had been quoting you. I don't know about you, but I've heard the line "they're always so happy" more times than I can remember. I'm know now that you and I agree (and doubtlessly many others on this thread) that this is not the case.
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Josephine

Orthodox Belle
# 3899

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quote:
Originally posted by Laura:
I think the decision not to breed falls into a different class. It's as eugenic in effect, I suppose, but requires an advance decision not to bring a life into being.

I see a difference, too, between choosing not to have children and choosing not to have this child. A woman who is a presumed carrier for hemophilia may choose not to have children, or she may choose to have children and abort if the child is male. I see the former as a perfectly appropriate response to the situation, and the latter as being as wrong as it can be.

There may be some problem in the logic here. It may not be entirely consistent. I'll have to think about it a while.

Many years ago, before amnio and eugenic abortion were routine, my aunt (a physician) said that she didn't see why any doctors would go into obstetrics any longer, because all parents had begun to demand perfect children, and if the children were less than perfect, they looked around for someone to blame -- usually the doctor. She said that we seemed to have lost the knowledge that a certain number of children are not perfect, and that such imperfection is just a normal part of the human condition. She thought the problem came from smaller families -- if a parent had six or eight kids, and one or two of them were imperfect, they still had the other kids that could fulfill their dreams, that could be a doctor, or marry and give them grandchildren, or whatever it was they wanted for their children. But if they only have one or two children, then they need those children to be perfect, or they have no hope of their dreams being fulfilled.

Is that all our children are to us? Do we have such an overwhelming need for them to be what we want them to be -- beautiful and intelligent and charming and successful, that if they may fail in one of these areas, if they may have a club foot or a cleft palate or Down Syndrome, we'd rather not have them at all?

Or does something else drive it?

I don't know. But I think the fact that we abort 90% of the fetuses diagnosed with Down syndrome, and a significant number of those with even less serious disorders, says something ugly about us. I'm not sure what, though.

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sewanee_angel
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# 2908

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[Hot and Hormonal] I posted too quickly. The book you can preview at Amazon is Testing Women, Testing the Fetus and is one of several discussed in the article by Dr. Hall that I also posted. [Hot and Hormonal]
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Nicolemr
Shipmate
# 28

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quote:
I see a difference, too, between choosing not to have children and choosing not to have this child. A woman who is a presumed carrier for hemophilia may choose not to have children, or she may choose to have children and abort if the child is male. I see the former as a perfectly appropriate response to the situation, and the latter as being as wrong as it can be.

and i see that attitude as horrible. i'm not even sure i can put into words why it seems so sickening, but it makes me want to puke. its like saying to a woman who knows that she carries something dangerous and nasty in her genes "you can have children, but only if you risk having a child with this condition that _i_ don't have to worry about my children having because i'm not a carrier".

[ 03. August 2005, 16:47: Message edited by: nicolemrw ]

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Laura
General nuisance
# 10

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sewannee angel: thank you for that Christian Century article -- it was extremely thought provoking. The connection between Christian hospitality and what its ramifications are for those who accept or reject a disabled child resonated. Also the observations about the inevitable effect of the selective elimination of people who don't fit out modern, high-speed, organized lives on the ongoing decrease in societal and personal tolerance for such differences were fascinating. Damn. Now I have to get more books to read.

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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm

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RuthW

liberal "peace first" hankie squeezer
# 13

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I think we need to find a word other than "eugenic" to describe this sort of abortion. Eugenics is controlled selective breeding and implies a systematic approach. What we're talking about are lots and lots of individual decisions, and despite the fact that we can see trends, there isn't enough control by some authority for this to be eugenics, and it's certainly not selective breeding. People are still as far as I know choosing their mates themselves for a variety of conscious and unconscious reasons, some of which have nothing to do with their breeding quality. They're not being bred.
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Nicolemr
Shipmate
# 28

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after taking a moment or two to reflect, i think what cheeses me off most about the passage i'm commenting on above is the fact that it does specifically refer to a disease that only certain people are at risk of passing on, people who are carriers. if it were something like downs syndrome, where it can show up in anyones offspring, then i might not find it so upsetting. but to tell someone who knows they carry something unpleasant in their genes that they _must_ take the risk of passing it along if they wish to have children just seems so totally dreadfully _wrong_.

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chukovsky

Ship's toddler
# 116

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quote:
Originally posted by nicolemrw:
and i see that attitude as horrible. i'm not even sure i can put into words why it seems so sickening, but it makes me want to puke. its like saying to a woman who knows that she carries something dangerous and nasty in her genes "you can have children, but only if you risk having a child with this condition that _i_ don't have to worry about my children having because i'm not a carrier".

As I understand it, everyone carries a few genes for a genetic disorder, but most don't know about it because they don't have anyone in their family who's actually got the disorder. So it's all of our problem. Everyone is risking having children with a disorder, in some cases which isn't going to show up at birth, every time they decide they want to get pregnant.

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Esmeralda

Ship's token UK Mennonite
# 582

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I do think the whole argument changes when fertility is not taken for granted.

I got pregnant with my only child at 40, after some years of 'trying', and in a very miraculous way (well, sex was involved, but so was prayer for healing the family tree, and the connection of the conception to the prayer was very obvious, given the timing).

I refused amnio as, given this baby's 'miraculous' conception, there was no way I would terminate. I am not at all emotionally strong, I suffer from chronic depression, but I was convinced that God had given us this child.

As it turned out (though this wasn't confirmed till he was 7), our son does have a social learning difficulty, possibly autistic spectrum - though this would not have been shown by amnio. There are many moments when we fail to cope with his disorder, and the lack of an extended family is one of the factors making it harder. Of course, the lack of relatives is a direct result of Hitler's eugenics... (my parents were refugees from Austria).

Given all this, there is still absolutely no way I'd send our son back, or wish we'd aborted him. Were his disability more severe, I might have different feelings - but then we'd also get more support and educational help.

The midwife who said 'Do you know how much disabled children cost the NHS?' ought to be shot. And I say that as a pacifist. [Biased] Did she know how much smokers cost the NHS? Or careless drivers? Or people who consume too much fat? Should they all be 'terminated' too?

If a couple, or lone parent, feels they seriously cannot cope with a disabled child (and my sympathies are with them), they should put the child up for adoption when born. Many infertile couples would die for a baby to adopt, even if disabled.

I must admit my views are influenced by having attended an NHS fertility clinic, after 18 months wait when I was already in my late 30s, and the first thing that happened was that they gave me a photocopied sheet saying that the fertility clinic had been reduced from two days a week to one day, in order to provide better abortion services. Why not cut out the middle woman, I thought, and let the women with unwanted pregnancies carry the babies to full term and give the babies to us infertile women? [Mad]

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RuthW

liberal "peace first" hankie squeezer
# 13

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Everybody may run the risk of having a child to which they have imparted a genetic disorder, chukovsky, but some people carry the burden of knowing that there is a high likelihood that they will do so. There's a big difference between thinking there's an off chance you might have a kid with a problem and knowing that if you have a boy he will probably be a hemophiliac.
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Nicolemr
Shipmate
# 28

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chuk, please look at my post again, it says quite clearly "a woman who knows...".

yeah, any of us could come up with something that we don't know is there. i'm talking about cases where theres no doubt.

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Posts: 11803 | From: New York City "The City Carries On" | Registered: May 2001  |  IP: Logged
chukovsky

Ship's toddler
# 116

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quote:
Originally posted by RuthW:
People are still as far as I know choosing their mates themselves for a variety of conscious and unconscious reasons, some of which have nothing to do with their breeding quality. They're not being bred.

A chat with a British Nigerian medical student I know suggests otherwise: sickle cell is so common in her ethnic group that a lot of people ask about someone's carrier status as soon as they get serious together, and may choose not to start a family if they are both carriers. A TV programme I saw a while ago suggested the same might be the case in formerly Mediterranean communities now settled in the US where a high incidence of thalassaemia (which is similar - two carriers may have an affected child).

It's hard, obviously, but as she said, when you've seen several of your schoolmates die, you don't know what to do.

Incidentally, I seem to sense a difference in attitudes to children who might have a learning disability, those who might have a physical disability, and those who might have a life-threatening illness. I'm not sure if this is just my perception, though, but I wonder if people (in general, rather than on the Ship) think it's more acceptable to terminate a pregnancy if the child has Down Syndrome (so if there's a test for autism they'd be the next to go), versus a child who has severe cleft palate (the parallel I'd guess would be cerebral palsy?) or one with cystic fibrosis (the parallel possibly being leukaemia?)

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Josephine

Orthodox Belle
# 3899

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quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion. Eugenics is controlled selective breeding and implies a systematic approach.

If you read the stuff on the American eugenics movement of the 20th century, it wasn't highly systematic. Not at first, anyway. Rather, people were encouraged to see the "feebleminded" as a burden on society, through the media, displays at fairs, and so on. And then the question naturally arises, why should we all support more and more feebleminded people? They aren't contributing members of society after all.

So they were sometimes sterilized without their consent, not by the government, but by their caretakers at the group homes and asylums where they were supposed to be cared for. Or they were used as subjects in medical experiments, again without consent. But it was considered completely justified, as it allowed them some means of contributing to the society that was supporting them.

And the circle was widened to include prisoners, and those with physical handicaps, and those from inferior races. It wasn't particularly systematic -- a variety of influential people and private organizations, opinion makers, textbook writers, even Christian ministers. It was just obvious to everyone that those who would be burdens on society, on the good people, the valuable people, should be gotten out of the way.

It was inconvenient to do so much of the time, because we didn't discover the inconvenience of feeblemindedness or physical deformity until after the person had already been born. The best we could do was isolate them, keep them out of sight, and prevent them from reproducing. But now we can figure it out in advance, and remove them before they have any opportunity to trouble us at all.

So we can do it earlier, with less cost, less trouble, less trauma to those of us whose lives are worthwhile. Not even any embarrassing questions to answer. It's clean and tidy. What more could a eugenecist want?

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chukovsky

Ship's toddler
# 116

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quote:
Originally posted by nicolemrw:
chuk, please look at my post again, it says quite clearly "a woman who knows...".

yeah, any of us could come up with something that we don't know is there. i'm talking about cases where theres no doubt.

My point is that everyone should know that they have the potential for having a child with a genetic disorder. It's down to lack of education/information/people not wanting to think about it that people don't know. We should all know. We should all think about what we'd do in that situation, because every single one of us has the potential to be in that situation if we get pregnant.

So when a woman says it's wrong for a pregnant woman to make X decision if she finds out her child might be seriously ill, you can't say "well, it's fine for you to say that because you'll never be in her situation". If she gets pregnant, she could be, like anyone.

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RuthW

liberal "peace first" hankie squeezer
# 13

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quote:
Originally posted by chukovsky:
quote:
Originally posted by RuthW:
People are still as far as I know choosing their mates themselves for a variety of conscious and unconscious reasons, some of which have nothing to do with their breeding quality. They're not being bred.

A chat with a British Nigerian medical student I know suggests otherwise: sickle cell is so common in her ethnic group that a lot of people ask about someone's carrier status as soon as they get serious together, and may choose not to start a family if they are both carriers. A TV programme I saw a while ago suggested the same might be the case in formerly Mediterranean communities now settled in the US where a high incidence of thalassaemia (which is similar - two carriers may have an affected child).
These people are not being bred. They are choosing their own mates and making their own decisions about having children. These are trends, not systematic things and not controlled. So this is not eugenics.
Posts: 24453 | From: La La Land | Registered: Apr 2001  |  IP: Logged
Choirboy
Shipmate
# 9659

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quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion.

I agree. It seems a stretch to compare the decisions of an individual couple to the Holocaust. However, it seems perfectly admissible to question whether national treatment guidelines are, intentionally or unintentionally, promoting consequences that are similar to an explicit policy of eugenics. Or, if that is too strong, whether they meet ethical dards - including a proper standard of informed consent that allows a couple to make informed ethical decisions.

Now, of course, if your ethical standard includes the position that abortion is always wrong, there is no policy that will be acceptable. But even if we adopt an ethical position that the hospital guidelines should respect the parents views on abortion, it appears there are some problems with current policy, at least in terms of providing proper informed consent.

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RuthW

liberal "peace first" hankie squeezer
# 13

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quote:
Originally posted by josephine:
And the circle was widened to include prisoners, and those with physical handicaps, and those from inferior races. It wasn't particularly systematic -- a variety of influential people and private organizations, opinion makers, textbook writers, even Christian ministers. It was just obvious to everyone that those who would be burdens on society, on the good people, the valuable people, should be gotten out of the way.

But they wanted it to be systematic. And I think what's going on now is different, because people aren't aborting children with Down Syndrome because they'll be "burdens on society" or because they want to make the human race faster, stronger, smarter, better, whatever. They're aborting children with Down Syndrome because they individually don't want to deal with it.

If we keep going down this road, we might be heading toward eugenics. But that's not what's happening right now, and I think we need a different word.

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Choirboy
Shipmate
# 9659

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quote:
Originally posted by chukovsky:
My point is that everyone should know that they have the potential for having a child with a genetic disorder. It's down to lack of education/information/people not wanting to think about it that people don't know. We should all know. We should all think about what we'd do in that situation, because every single one of us has the potential to be in that situation if we get pregnant.

I think we need to differentiate between the potential for age-related chromosomal defects which can occur for anyone and hereditary disorders. The latter are not as widespread and your status can be determined by examination of your own (and your partner's) DNA. That changes the questions of screening, the timing of the events, and quite possibly the parent's level of knowledge.

I know that I will never have a child with Tay Sachs disease, for example. It's not genetically possible. However, I couldn't say the same thing about Down's. So the question of whether one can or cannot say "it's fine for you to say because you'll never be in her situation" is perhaps more nuanced. The knowledge of disease is different, and the consequences are different.

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FCB

Hillbilly Thomist
# 1495

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quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion. Eugenics is controlled selective breeding and implies a systematic approach. What we're talking about are lots and lots of individual decisions, and despite the fact that we can see trends, there isn't enough control by some authority for this to be eugenics, and it's certainly not selective breeding.

I'm not wedded to the word "eugenic," but I'm also not comforted by the fact that this trend toward aborting the disabled is the result of "lots and lots of individual decisions" rather than a command from a centralized authority. Perhaps I've read too much Foucault, but it seems to me that none of our decisions are a free as we'd like to think, and that there are social forces that operate through very subtle forms of discipline and are no less pernicious than the more obvious disciplines imposed by centralized powers. Indeed, as Foucault pointed out, they may well be more pernicious because their operation is more hidden.

FCB

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Laura
General nuisance
# 10

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Ruth:

The American Heritage Dictionary defines eugenic as follows:

quote:
SYLLABICATION: eu·gen·ic
PRONUNCIATION: y-jnk
ADJECTIVE: 1. Of or relating to eugenics. 2. Relating or adapted to the production of good or improved offspring.

I'd say anything that is related to the production of good or improved offspring is de facto eugenic in intent. I think the word fits. That people don't like it suggests that we're uncomfortable with the truth. What's the old Alice's Restaurant quote? If there's one, they'll think he's crazy, if there's two, they'll think they're both gay, but if there's three, that's movement. Just because it isn't officially coordinated, that doesn't mean it isn't a movement. I think the tendency of the medical establishment to automatically offer these tests and the fact that people tend to be reflexively offered abortion starts turning it into something else. Something like eugenics.

I don't know what else to call it, and still be truthful.

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Rat
Ship's Rat
# 3373

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quote:
Originally posted by Choirboy:
I think we need to differentiate between the potential for age-related chromosomal defects which can occur for anyone and hereditary disorders. The latter are not as widespread and your status can be determined by examination of your own (and your partner's) DNA.

Well, I don't think that's entirely true. There are plenty of hereditary disorders for which the genetic markers have not been identified or a reliable test has not been created. Even some genetically identifiable diseases (such as Charcot-Marie-Tooth disease) have variants with identical symptoms for which the gene has not been identified.

And - as chukovsky mentioned - if nobody in your family's recent generations has had recognisable symptoms you would almost certainly not take part in any genetic screening anyway. Yet the particular combination of genes that made this baby could throw up a disorder.

The chances are low, but it is perfectly possible for parents with no known history of hereditary disorders to produce a child who has one.

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It's a matter of food and available blood. If motherhood is sacred, put your money where your mouth is. Only then can you expect the coming down to the wrecked & shimmering earth of that miracle you sing about. [Margaret Atwood]

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tclune
Shipmate
# 7959

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quote:
Originally posted by Laura:
I'd say anything that is related to the production of good or improved offspring is de facto eugenic in intent. I think the word fits.

And I think this summarizes the disquiet of Ruth quite well. From where I'm standing, you are imputing to people who choose to abort a motive of "the production of good or improved offspring." In actuality, the hypothetical people we have been discussing are presumed to be wanting to avoid a situation that they find intolerable. Eliding those two things together is highly problematic. By analogy, it is not at all clear that everyone who would like to avoid bankruptcy is greedy.

--Tom Clune

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RuthW

liberal "peace first" hankie squeezer
# 13

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quote:
Originally posted by Laura:
I'd say anything that is related to the production of good or improved offspring is de facto eugenic in intent.

Like taking vitamin whatever (sorry, can't remember which one it is) because it's supposed to help guard against spina bifida? Not drinking alcohol during pregnancy? Giving up smoking?

quote:
I think the word fits. That people don't like it suggests that we're uncomfortable with the truth.
I dislike it because I think it's inaccurate. I'm no more comforted than FCB is by the fact that this is a trend made up of thousands of individual decisions, but I think if we're going to apply a label to it, it needs to be more accurate.

quote:
I think the tendency of the medical establishment to automatically offer these tests and the fact that people tend to be reflexively offered abortion starts turning it into something else. Something like eugenics.
Maybe it is headed that way. But I don't think we're there. Yet. And I think this fails to factor in the medical establishment's probable motivation of fear of lawsuits from parents who wanted perfect children.
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Laura
General nuisance
# 10

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quote:
Originally posted by FCB:
...Perhaps I've read too much Foucault, but it seems to me that none of our decisions are a free as we'd like to think, and that there are social forces that operate through very subtle forms of discipline and are no less pernicious than the more obvious disciplines imposed by centralized powers. Indeed, as Foucault pointed out, they may well be more pernicious because their operation is more hidden.
FCB

I agree. This changeover has taken place in the last generation or two without much in the way of public debate. In a way, that's scarier.

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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm

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