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Source: (consider it)
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Thread: Purgatory: "Tentative pregnancy"/prenatal euthanasia
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tclune
Shipmate
# 7959
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Posted
quote:
Originally posted by josephine:
Does the availability of prenatal euthanasia reinforce this attitude? Make it more acceptable and more prevalent?
I think it does. But if tclune, or anyone else, disagrees, I'd like to hear their reasons.
It may reinforce that attitude, but I'm not sure that that point matters. By analogy, it is possible that allowing people to die with dignity can give comfort to those who think that anyone who can't pull his or her weight should be liquidated. But that hardly provides a rational basis for requiring all of us to undergo every possible invasive medical procedure.
In general, "slippery slope" arguments are suspect, at least to my mind. The basic form of the argument is: sure, this isn't wrong. But it moves in a direction that could end up being wrong if we continued on that path ad nauseum. The problem with this form of argument is that it can be used to argue against any behavior: sure, eating vegetables isn't wrong. But it can lead to gorging yourself until you are too fat to get out of your house. I refuse to participate in any form of activity would make gluttons feel less sinful.
I recognize that you believe prenatal euthanasia to be wrong. That is a perfectly respectable view that can be (and you have) defended on its own merits. But the validity of your position has nothing to do with discomfiting those who would deny the rights of handicapped people.
--Tom Clune
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Posts: 8013 | From: Western MA | Registered: Jul 2004
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chukovsky
Ship's toddler
# 116
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Posted
quote:
Originally posted by Adeodatus:
I read a fascinating paper recently that touches on the subject. In it, the researcher put some questions to research ethics committees in various medical establishments. When asked simple questions like "is it ethical to screen for Down's syndrome?" most of these ethicists answered "yes". However, when the question was broken down and the implications of performing the test were examined, most of the ethicists came to the conclusion that it was not ethical.
Interestingly, more of the committee members said it wasn't ethical if told the extra cost of a child with the condition was £100,000 than if told it was £5000.
The people they asked were members of research ethics committees but I know there are hospital ethics committees that decide on treatment issues (e.g. as seen on TV the other day, if a child aged 10 needs a heart-lung transplant and her parents say yes, is it up to her to decide or can it go ahead without her consent?). That would be who decided things like this, at the moment, I would imagine, since there doesn't seem to be a nationwide policy in the UK.
from the article:
quote:
33% of respondents in a survey in Russia indicated that they favoured compulsory termination of pregnancy if testing identified a genetic disorder in the fetus
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Posts: 6842 | From: somewhere else | Registered: May 2001
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Newman's Own
Shipmate
# 420
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Posted
quote:
33% of respondents in a survey in Russia indicated that they favoured compulsory termination of pregnancy if testing identified a genetic disorder in the fetus
I find this truly chilling. I have found many comments on this thread regarding eugenics, especially Josephine's, to be excellent expressions of what I myself would hold about the subject. (I had hesitated posting on this thread, because I have no children and my views could be taken as naive as a result. Nonetheless, I do have a chronic disability - and even red hair.)
I have known various mothers of disabled children (Downs syndrome, for example) who had only to take their child anywhere to solicit comments such as "didn't you have the amniocetesis?" The implication that the child should have been aborted, and that this course of action would have been taken had the parents only known the child was disabled, saddens me immensely.
Some of the posts and links, and other information I have read on the topic, upsets me because undesirables are classed by what they may cost the NHS/insurance - eliminate them and there could be so much more money available.
I am no abortion advocate, but could certainly understand parents questioning whether they could deal with having a disabled child. Yet I would hate to see anyone aborting a foetus because of a perception that it would be a strain on society's resources.
Though this was not in relation to abortion, I can remember when those seeking to improve education and other resources for the disabled (of which there was a shocking lack not so many decades ago) promoted this by saying they could become (for example) employed, tax paying members of society. Of course, in many cases this was true, but the same concept can be dangerous taken to any extreme.
I would hate to see the value of life evaluated on the basis of either the potential for 'productivity' or the projected expenses for an individual's medical care. There is no clearcut answer about the Christian approach to a decision on the part of a couple about whether to have a disabled child per se - their motives could be charitable and generous, for example. But a general idea that the value of any person's life (some of you are going to hate me for this - but I cannot refrain from adding that our human nature has been deified in the Incarnation, and everyone has the stuff of the saint within) is qualified by a perceived economic use or related strain seems quite out of accord with the Christian faith.
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Cheers,
Elizabeth
“History as Revelation is seldom very revealing, and histories of holiness are full of holes.” - Dermot Quinn
Posts: 6740 | From: Library or pub | Registered: Jun 2001
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sharkshooter
Not your average shark
# 1589
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Posted
quote:
Originally posted by Laura:
See, now, in places like India and China, local technicians will buy a sonography machine almost solely for the purpose of determining sex so that women can abort girls. This has resulted in towns where there is a marked sex imbalance. While the Indian gov't has made some move to ilegalize abortions for gender selection and prevent sonographers from reporting the gender, I find myself wondering what the result of that will be. Before gender-based abortion, poor women typically poisoned or exposed or drowned extra girl babies. I think an abortion at 16 weeks for that purpose is an evil, but is it more evil than murder after birth? I don't know.
They obviously have a serious problem. I read this today ...
quote:
Sugita Katyal
Reuters
NEW DELHI
NEW DELHI - A 10-year study of babies born in hospitals in the Indian capital Delhi has found the sex ratio unnaturally skewed in families that already have a girl, with the likelihood of a female fetus being aborted increasing the more daughters a family has.
The study recorded that the number of female births was 542 per 1,000 boys if the first child was a girl. If the first two children were girls, there were just 219 girls born for every 1,000 boys.
"Our study showed 50% of female fetuses are eliminated if it's a second girl and after two girls almost three-fourths of the female fetuses are eliminated," said Joe Varghese of the Christian Medical Association, which carried out the study.
Across India, experts say the number of women dropped to 933 for every 1,000 men in 2001, from 941 in 1961, largely because of a long history of female infanticide and, more recently, sex-selective abortions. In 1901, the ratio stood at 972 women for every 1,000 men.
How do you police such a thing?
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Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer. [Psalm 19:14]
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by tclune:
In general, "slippery slope" arguments are suspect, at least to my mind.
In general, I would agree. But it appears significant, and perhaps valid, in this particular case, because we have been down this particular slippery slope, or one very much like it, in recent history. In fact, we've been down several like it.
When we have decided that one human life is worth more than another based on this or that characteristic (race, sexual orientation, handicap, sex, whatever), bad things have happened. And the distance between "people like this are better off not being born" to "people like this shouldn't have been born" to "we shouldn't allow people like this to be born."
When you reach that point -- and there are plenty of people who have already reached it with respect to handicapped people -- how far is it to the next step? "People like this shouldn't be using resources that other people need. Giving them medical care, education, access to jobs, access to housing, takes those resources away from the rest of us."
I'm telling you, Tom, we have been down this road before. It let do the Holocaust. It led to the Tuskegee Experiments. It leads to all manner of evil.
And one of the evils is that, as the idea that people with handicaps simply shouldn't be born becomes more prevalent and more accepted, people with handicaps will become even more marginalized, and will have more and more difficulty accessing the resources and support that they need.
I'd love to be wrong, Tom. Can you give me any evidence that I am?
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Laura
General nuisance
# 10
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Posted
quote:
Originally posted by sharkshooter:
They obviously have a serious problem. I read this today ...
quote:
Sugita Katyal
Reuters
NEW DELHI
NEW DELHI - A 10-year study of babies born in hospitals in the Indian capital Delhi has found the sex ratio unnaturally skewed in families that already have a girl, with the likelihood of a female fetus being aborted increasing the more daughters a family has.
The study recorded that the number of female births was 542 per 1,000 boys if the first child was a girl. If the first two children were girls, there were just 219 girls born for every 1,000 boys.
"Our study showed 50% of female fetuses are eliminated if it's a second girl and after two girls almost three-fourths of the female fetuses are eliminated," said Joe Varghese of the Christian Medical Association, which carried out the study.
Across India, experts say the number of women dropped to 933 for every 1,000 men in 2001, from 941 in 1961, largely because of a long history of female infanticide and, more recently, sex-selective abortions. In 1901, the ratio stood at 972 women for every 1,000 men.
How do you police such a thing?
Well, here's that slippery slope, dealing with abortion for different reasons, but with pretty clear results, if anyone needed an illustration.
This is why my husband and I have seriously considered adopting a girl from India. It breaks my heart to have them so unwanted, poor little things.
[ 05. August 2005, 15:10: Message edited by: Laura ]
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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RuthW
liberal "peace first" hankie squeezer
# 13
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Posted
I don't think you can police such a thing as the abortion of unwanted girls. As has already been pointed out, there are ways to abort a child that don't require going through the high-tech medical establishment, and without access to any form of abortion girls will just be abandoned or murdered after they're born. As long as women are perceived to be less valuable than men, girls will be got rid of, somehow. The status of women has to change to fix this problem.
Posts: 24453 | From: La La Land | Registered: Apr 2001
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Laura
General nuisance
# 10
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Posted
RuthW:
You're absolutely right about that, of course. However, I'm not sure how the status of women will ever change, however, in a society in which there are fewer and fewer of them, because they are being killed out of the population. The studies which show an every-increasing gender imbalance in certain areas tend to demonstrate that it is abortion availability that is resulting in that net decrease. In other words, while murder of baby girls continues, people are far more willing to kill them prenatally than postnatally. And it helps I suspect that it is legal and private to kill them prenatally, but not postnatally.
I assume the same will happen eventually with a lot of even minor defects in the popluation, at least in Western countries. I don't expect that tolerance and help for people with physical and mental disabilities will improve as a result of this.
What can be done about it I don't know, but it's very depressing.
[ 05. August 2005, 16:08: Message edited by: Laura ]
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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sharkshooter
Not your average shark
# 1589
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Posted
quote:
Originally posted by Laura:
... In other words, while murder of baby girls continues, people are far more willing to kill them prenatally than postnatally. And it helps I suspect that it is legal and private to kill them prenatally, but not postnatally.
Are we enabling them by allowing ready access to abortion?
quote:
Originally posted by Laura:
I don't expect that tolerance and help for people with physical and mental disabilities will improve as a result of this.
There will just be less of them around.
I am sure sitting on the sidelines is not the right thing to do, but I am at a loss.
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Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer. [Psalm 19:14]
Posts: 7772 | From: Canada; Washington DC; Phoenix; it's complicated | Registered: Oct 2001
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Rat
Ship's Rat
# 3373
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Posted
I was particularly depressed to see a documentary about China last night which suggested that scarcity (of girls) isn't raising the status or influence of women. I vaguely thought it might do, supply and demand type of thing.
It looks like in the cities where the status and freedom of women was already higher, single girls are empowered to some extent. But in the country where traditional attitudes persist the response to a shortage of women is not to value them more highly, but kidnap, rape and forced marriage, selling girl children to the highest bidder.
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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]
Posts: 5285 | From: A dour region for dour folk | Registered: Oct 2002
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tclune
Shipmate
# 7959
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Posted
quote:
Originally posted by josephine:
I'd love to be wrong, Tom. Can you give me any evidence that I am?
Not only am I unable to give you any such evidence, I can't imagine what would count as such. On the other hand, the idea that Nazis killed people it found undesirable doesn't seem to count as a precedent for anything except that human depravity can be boundless. The experimentation in Tuskegee, or the greater excesses in Manchuria and the German concentration camps are certainly horrific tales of what humans can bring themselves to do to each other, but I am hard-pressed to see the analogy.
What I can see is that a woman would be forced to endure an unwanted pregnancy if we were to outlaw abortions. This comandeering of another's body is very serious business, it seems to me, and rather totalitarian. Those who would require this do so in service of a good that they can't possibly define clearly (unless they demand that all fertilized eggs be borne as tribute to their ideology).
It is clear to me that, once a baby is born, another person can take responsibility for the baby without forcing any invasive demands on the woman. Until then, the excess seems to me all on the side of those who demand that their views are determinative for another person's body. The excesses that I worry about spring from that, not an abstract invocation of Nazi Germany.
The excesses in Communist China were horrific for the same reason that outlawing abortion here would be. I can understand this decision procedure, and simply can't get my mind around the more abstract demands. The road to excess, it seems to me, is paved with fuzzy idealism more readily than clear bases for limiting one's invasive authority over another.
--Tom Clune
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Posts: 8013 | From: Western MA | Registered: Jul 2004
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sharkshooter
Not your average shark
# 1589
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Posted
quote:
Originally posted by tclune:
...What I can see is that a woman would be forced to endure an unwanted pregnancy if we were to outlaw abortions. This comandeering of another's body is very serious business, it seems to me, and rather totalitarian.
There are many things in life that are "unwanted". Surely we should not simply get rid of them all because they are unwanted.
quote:
Originally posted by tclune:
Until then, the excess seems to me all on the side of those who demand that their views are determinative for another person's body. ...
Your position permits the mother's views to be determinative for the unborn child's body. The only way I can reconcile this is to assume that your argument is that an unborn child is just another part of the mother's body (like an appendix or a liver). Is that what you believe?
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Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer. [Psalm 19:14]
Posts: 7772 | From: Canada; Washington DC; Phoenix; it's complicated | Registered: Oct 2001
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tclune
Shipmate
# 7959
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Posted
quote:
Originally posted by sharkshooter:
Your position permits the mother's views to be determinative for the unborn child's body. The only way I can reconcile this is to assume that your argument is that an unborn child is just another part of the mother's body (like an appendix or a liver). Is that what you believe?
You are right in all but language as to what I would say with regard to your first sentence -- I believe that the woman (ideally with due consideration to the desires and concerns of the hopefully still-involved man) has final say over whether or not to carry the fetus to term.
Obviously, there is a very large difference between a liver and a fetus. A liver does not have the potential of independent existence some time in the future. I would not necessarily be appalled if there were procedures for providing the woman with an abortion in such a manner that the fetus would become the responsibility of another if the operation were no more invasive than an abortion.
But I can imagine that such a transferring of responsibility would end up being more of a step backward than forward. The excesses that a woman can exhibit relative to an unwanted pregnancy are nothing when compared to the excesses that the state (or even the Church, if you bother looking at the history of these things) can show when it takes responsibility for lives over which it need not be accountable to others for.
--Tom Clune
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Posts: 8013 | From: Western MA | Registered: Jul 2004
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Choirboy
Shipmate
# 9659
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Posted
I hear the trample of ghostly hooves.
Posts: 2994 | From: Minneapolis, Minnesota USA | Registered: Jun 2005
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TheLearner
Apprentice
# 9740
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Posted
quote:
Originally posted by Newman's Own:
quote:
33% of respondents in a survey in Russia indicated that they favoured compulsory termination of pregnancy if testing identified a genetic disorder in the fetus
I find this truly chilling. I have found many comments on this thread regarding eugenics, especially Josephine's, to be excellent expressions of what I myself would hold about the subject. (I had hesitated posting on this thread, because I have no children and my views could be taken as naive as a result. Nonetheless, I do have a chronic disability - and even red hair.)
I have known various mothers of disabled children (Downs syndrome, for example) who had only to take their child anywhere to solicit comments such as "didn't you have the amniocetesis?" The implication that the child should have been aborted, and that this course of action would have been taken had the parents only known the child was disabled, saddens me immensely.
Some of the posts and links, and other information I have read on the topic, upsets me because undesirables are classed by what they may cost the NHS/insurance - eliminate them and there could be so much more money available.
I am no abortion advocate, but could certainly understand parents questioning whether they could deal with having a disabled child. Yet I would hate to see anyone aborting a foetus because of a perception that it would be a strain on society's resources.
Though this was not in relation to abortion, I can remember when those seeking to improve education and other resources for the disabled (of which there was a shocking lack not so many decades ago) promoted this by saying they could become (for example) employed, tax paying members of society. Of course, in many cases this was true, but the same concept can be dangerous taken to any extreme.
I would hate to see the value of life evaluated on the basis of either the potential for 'productivity' or the projected expenses for an individual's medical care. There is no clearcut answer about the Christian approach to a decision on the part of a couple about whether to have a disabled child per se - their motives could be charitable and generous, for example. But a general idea that the value of any person's life (some of you are going to hate me for this - but I cannot refrain from adding that our human nature has been deified in the Incarnation, and everyone has the stuff of the saint within) is qualified by a perceived economic use or related strain seems quite out of accord with the Christian faith.
Newman's Own,
I also found this post chilling. I am a professional caregiver for children and adults with disabilities. Both my wife and I have devoted our (thus far) young lives to caring for and working with individuals with disabilities. They value that they do have in society, in the eyes of their families, and (most especially) in the eyes of God is immeasurable.
Not only am I frightened by the idea that we would somehow make abortion compulsory in the cases of genetic disorders, but I am also terribly disturbed by the fact that we allow mothers to initiate abortion in the case of a fetus that is likely to be born with a disablity. When that occurs, our world has lost the value that is added by a human life that is NOT an accident. Most parents of children with disabilites that I have talked to would certainly prefer that their child had been born without the disability, as much for the sake of the child as for themselves. This, however, does not mean that the life they do live is not of value.
With regard to the idea that parents who do not consider themselves "up to the task" of caring for a disabled child should be permitted to abort. The problem with that line of reasoning is that it allows parents to make a value judgement regarding the potential life of the fetus, and only in regards to their own comfort, skill level, etc. (I do not mean this in the case of severe genetic disorders where the chance of a child surviving are slim to none).
My ideas and opinions on abortion are undergoing some changes currently, but one thing that I feel very strongly about is this: I am against using screening for disabilies to make decision on whether the child will be aborted or not. If the decision rests on the condition of the mother, her positition in life, etc. then the argument "it's her body, let her choose" holds some water. If the decision rests on the condition/health of the fetus, then the argument is moot. The potential mother is not making a decision based on her own body, but on the body of the fetus.
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Pollack
"All Christians should be tools in the hand of God, but some are bigger tools than others." -Anonymous (Hope I didn't see this one on SoF)
Posts: 21 | From: Siloam Springs, AR, USA | Registered: Jul 2005
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sharkshooter
Not your average shark
# 1589
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Posted
quote:
Originally posted by Choirboy:
I hear the trample of ghostly hooves.
And I should know better. Sorry.
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Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer. [Psalm 19:14]
Posts: 7772 | From: Canada; Washington DC; Phoenix; it's complicated | Registered: Oct 2001
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Laura
General nuisance
# 10
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Posted
It's hard, but not impossible, to stay away from that dead horse.
I think the discussion shows an interesting fundamental sticking point for some people. I wouldn't outlaw abortion for any/no reason but in my heart, I'd really like to outlaw it for gender selection purposes. That seems fundamentally evil to me. But one can't outlaw the latter without outlawing the former, as long as it's legal to abort still at the time one may determine the gender.
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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Laura
General nuisance
# 10
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Posted
A friend who lives in a third world country, with whom I've been discussing this issue, says that as far as she's concerned it'd be better if they were able to abort the defective because the society she moves in regards the disabled as such a burden that people who make it to adulthood often commit suicide. That the presence of these conditions in plenty does nothing to alleviate that societal value.
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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chukovsky
Ship's toddler
# 116
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Posted
Fortunately there are advocates for the disabled (themselves including disabled and non-disabled individuals) in developing countries also (again, have a look at the link I posted above to the interview with the special needs teacher from Uganda).
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Posts: 6842 | From: somewhere else | Registered: May 2001
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Arabella Purity Winterbottom
Trumpeting hope
# 3434
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Posted
I read this thread before lunch, then went for a long walk. I'd just like to say that its one of the best I've read on the ship, thank you all.
I don't know if I have an opinion. I have a number of friends who live with disabilities, physical, intellectual and mental. They have difficulties I will never have, not the obvious ones like their disabilities, but with the unthinking idiocy of so-called "normal" people.
When other people define you by your disability rather than by knowing you, that's a huge stumbling block. I guess in the end, that might put me in the "no" camp intellectually, since what is being discussed here is defining unborns by their disabilities.
But I simply don't know how I'd feel about it if I became pregnant (aged 42) and was told about a definite disability. I've worked in a psychopaedic hospital, and I've seen elderly mothers with adult disabled children. A lady springs to mind who had two daughters and a son with a very rare chromosomal disorder. The children were in their 40s, tall, strong, aggressive and not able to do the slightest thing for themselves. They were not verbal, lived in wheelchairs and were violent. Mother was in her mid-70s, and was completely worn out. She needed respite care for them because she had broken her hip after her son knocked her over. No respite care was available, so she just left them sitting in their wheelchairs in the middle of the hallway and wheeled herself out. Later on it became apparent that she'd had no life at all because her husband had abandoned her 30 years previously, her family didn't want to know, and because there were three children, most respite places couldn't deal with that many children requiring such a high level of care, let alone once they became adults.
I know its an extreme case, but she had been living in a nightmare ever since her children got bigger than her. Its that kind of story that leaves me wondering what I'd do, though.
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Hell is full of the talented and Heaven is full of the energetic. St Jane Frances de Chantal
Posts: 3702 | From: Aotearoa, New Zealand | Registered: Oct 2002
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Arabella Purity Winterbottom:
I know its an extreme case, but she had been living in a nightmare ever since her children got bigger than her. Its that kind of story that leaves me wondering what I'd do, though.
I think this kind of story highlights a huge problem: In this country, families are supposed to be able to care for their own on their own. But when a family member is severely disabled, particularly if the disability is long-term, that expectation is quite simply absurd. An individual family doesn't have the resources to do what needs to be done.
I've never decided whether our society's failure to acknowledge that and to respond appropriately is the result of simple ignorance -- people just don't know what's needed -- or whether it's a result of a self-centeredness that borders on evil. I'll take care of me and mine, you can die in a ditch for all I care.
If we provided for the needs of the severely disabled as we should, then one reason for prenatal euthanasia, to eliminate the overwhelming burden of severe disability from the family, would be moot. You wouldn't have to decide whether the family would be better off without this person, you'd only have to decide whether this person would be better of never being born.
But it disturbs me that prenatal euthanasia is justified based on the hard cases, cases like the one you mention, or anencephaly, but it's used regularly for things that just aren't all that hard. Persons with cleft palate or dwarfism or red hair simply do not place overwhelming burdens on their families. Not because of those characteristics.
So I continue to find it horrifying that we are willing to kill fetuses because they do not meet our standards of perfection. Not because their life, if they lived to be born, would be unbearable, nor because their existence would make the lives of their family members unbearable, but simply because they might not be as attractive or as intelligent as we hoped them to be.
I also find it disturbing that we, as a society, would rather eliminate handicapped people through prenatal euthanasia than fund the care they need. And, although Tom Clune doesn't understand why, I do worry that this attitude will worsen the situation of handicapped people in our society, that people will resent paying for their care when they could just as well have been aborted, that such care as there is will therefore be reduced or eliminated, and, eventually, the rights of handicapped individuals will be eroded to the point that euthanasia for handicapped children and adults will become acceptable.
I don't want that to happen. But I'm afraid that's where we're heading.
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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RuthW
liberal "peace first" hankie squeezer
# 13
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Posted
I see your point, josephine, and the notion of screening for red hair is just as appalling now as it was the first time you mentioned it, but I also am troubled by your apparent willingness to say what other people's moral choices in painfully difficult situations ought to be. "We, as a society" haven't made these decisions. They're individual decisions made by the people who might, given the way things are, have to spend the rest of their lives caring for children such as the ones Arabella describes entirely by themselves. Given that they are the ones who will shoulder these burdens, I think it's perfectly fair that they should have a choice in the matter.
I have no intention of raising any child at this point. I'm too old, I'm too alone, and I'm too poor. If I were to become pregnant right now, giving the child up for adoption would probably be my best bet. If I were pregnant and learned that the child was going to be severely disabled, I would give very serious consideration to aborting the baby, depending on what I could find out about the chances that the child would be adopted and how the pregnancy was going in the early stages; a first pregnancy over 40 just might not be worth it. I don't know that I could bring myself to jeopardize my health to give birth to a severely disabled child that no one would want. Maybe if I were a better person I would want such a child. But I'm not. I'm just not.
Posts: 24453 | From: La La Land | Registered: Apr 2001
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Presleyterian
Shipmate
# 1915
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Posted
What RuthW said, especially in the first paragraph of her post.
As I'm sure we're all aware -- either through first-hand knowledge or simply given the odds in any random group of 10,000 people -- there are people who are reading this thread who have made the devastating choice to have an abortion due to a baby's untreatable birth anomalies. I know of no one who has ever made that decision lightly. And I simply don't feel comfortable telling grief-stricken parents that they and the act they undertook are evil, wrong, and self-centered.
I admire Josephine's certitude on this issue. I just think that a decision of this magnitude should be left in the hands of loving parents -- rather than judges, politicians, or anyone else who doesn't have to live with the consequences.
Posts: 2450 | From: US | Registered: Dec 2001
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ReginaShoe
Shipmate
# 4076
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Posted
I don't know if this observation will help the discussion any, being an account of just one person (and a strange one at that), but here is my experience:
We did not have amniocentesis for my daughter, born (perfectly healthy) when I was 34. We did have it for my son, born when I was 36 (and he was also perfectly healthy). We were encouraged to do so for my son solely because of my age, but the risks of miscarriage were not presented as so high. Since I had absolutely no intention of aborting a fetus with Downs syndrome or anything at that level or less, perhaps this was stupid of me (though all turned out fine, and they are both sleeping peacefully as I write this).
HOWEVER, I was at the time glad to have done it -- not because of the possibility of aborting a disabled child, which we had no desire to do anyway, but for the opportunity to learn of any disability and prepare for it in advance of the baby's birth. Particularly since we already had one child, if we knew we were expecting a child with serious disabilities, we would want to prepare the big sister for lots of time in the hospital and so forth. Also, we would want to have as much time as possible to research the disease and learn what things we could do from the moment of birth on to help the child cope with it. Finally, in our case, the amnio procedure included an incredibly detailed examination of the baby, which I could follow on the video monitor. This, far from encouraging me to think of it as a "tentative" pregnancy, made it seem several orders of magnitude more real.
So maybe I'm an oddball, but I don't think you can totally place the blame on amniocentesis for parents who think of their pregnancy as tentative. It certainly didn't have that effect on us!
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"If you have any poo, fling it now." - Mason the chimp
Posts: 598 | From: Colorado | Registered: Feb 2003
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by RuthW:
I also am troubled by your apparent willingness to say what other people's moral choices in painfully difficult situations ought to be.
I almost decided not to post on this thread because I know my feelings on this topic are so strong as to be, perhaps, not suitable for airing in public. It's just difficult to engage in a robust discussion of this topic without saying things that might hurt or offend. As Regina points out, people who read this may have made this decision themselves, and reading my thoughts on the matter might be painful. In normal polite conversations with relative strangers, we don't address painful topics, or intensely personal topics, or topics where there is the potential for profound differences of opinion at such a gut-wrenching level.
But, honestly, I think this topic needs to be discussed openly. And I think all points need to be covered, from Tom Clune's to mine.
quote:
"We, as a society" haven't made these decisions. They're individual decisions made by the people who might, given the way things are, have to spend the rest of their lives caring for children such as the ones Arabella describes entirely by themselves.
But the cumulative effect of a lot of individual decisions represents what we as a society want and what we value. The people Arabella talked about are in the position they are, not solely because of the decisions they made, but because of decisions the rest of us made as well.
Each time one of us votes, it's an individual decision. But A whole lot of individual decisions have resulted in the collective decision that it's better to have lower taxes than to have the sort of social and medical services that would have allowed the woman's children to be cared for properly. A whole lot of individual decisions have resulted in the collective decision that it's too difficult to accommodate disabled people at school, at work, and in society.
And when we said, back in the 1970s, that we really did want to accommodate disabled people, to integrate them in society (through the individual decisions of the people we'd elected to represent us), we gave ourselves a collective pat on the back and thought what nice people we were. And then we found out that it cost money and inconvenienced us to accommodate disabled people.
I've heard the grumbling when a bus has to load or unload someone on a wheelchair. It takes too long. We shouldn't have to wait for them. I know people who believe that it isn't fair or right for schools to provide accommodations or services for children with disabilities. It's not fair to the other kids, who don't get those accommodations; it's not fair to the people who pay taxes. If you're going to have a disabled child, you should deal with it yourself.
Granted, that's the expressed opinion of individuals. But when it is repeated by many individuals, and is considered a valid opinion by many, many more, then it's not just an individual opinion. It is an expression of what we as a society find acceptable.
We no longer tolerate people saying their kids shouldn't have to be in class with blacks or Mexicans, even though there are still individuals who feel that way. The cumulative effect of a lot of individual opinions has changed our society.
quote:
Given that they are the ones who will shoulder these burdens, I think it's perfectly fair that they should have a choice in the matter.
I wouldn't disagree. I know that people have to consider, not just the welfare of one child, but how that one child's needs affect them and their entire family. Given the way things are now, if they simply don't have the resources to provide the care the child needs, then prenatal euthanasia might be a valid option. It might be the only option they feel they have, the only one that allows them to do the best they can for everyone affected by the decision.
I understand and share Presleyterian's concern for those who suffer because they've already made a painful decision to abort a child they would have wanted had the child, and the situation, been different. But what about the pain suffered by people who know that most of the people they live with and work with and ride transit with would have preferred they had never been born? That's real pain, too.
Maybe I'm just crazy. But I think this is something that we, as a society, ought to face up to. It ought to be discussed. We ought to decide, collectively, and openly, if we want to be the sort of society that aborts 90% of the fetuses with Down syndrome. Maybe we do. But I don't think that's true. I hope it's not. And I would hope that, if the debate were engaged in publicly, it would have an effect on individual decisions such that caring for a disabled child would no longer be totally unthinkable.
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Laura
General nuisance
# 10
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Posted
quote:
Originally posted by Presleyterian:
I simply don't feel comfortable telling grief-stricken parents that they and the act they undertook are evil, wrong, and self-centered.
Right. But we have to be able to have these discussions -- the whole point of my OP was that this is essentially a silent movement, going on without public debate, which does affect real lives and also says something (what, exactly, is obviously subject to debate) about that society and what it values. That the subject may cause painful reflection is no reason not to discuss it here, where we touch on all kinds of difficult topics. Down in DH there's a thread where people who've had abortions (and statistically, we know there are probably several on the boards) can hear themselves described as murderers and mortal sinners. It doesn't get much more judgmental than that, but we have to be able to discuss these things.
Just having this debate here has shaped my own views on a decision I myself am facing within the next two weeks - whether to choose to have amniocentesis or not in this specific pregnancy. It's a big deal to me. The reason I started this thread was that I asked a lot of people IRL about prenatal testing decisions and nobody seemed to think it was a big deal and they all pretty much agreed that the point was to eliminate really disabled kids. And these are really lovely thoughtful people. Like the lovely thoughtful people here.
I still have no idea what I'm going to do, but I do incline to the view that amniocentesis is valuable as a diagnostic tool, for information gathering. I'm big into information. So I don't object to prenatal testing. But I'm uncomfortable with all the assumptions that seem to have come to inhere in the prenatal testing choices.
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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Laura
General nuisance
# 10
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Posted
quote:
Originally posted by RuthW:
They're individual decisions made by the people who might, given the way things are, have to spend the rest of their lives caring for children such as the ones Arabella describes entirely by themselves. Given that they are the ones who will shoulder these burdens, I think it's perfectly fair that they should have a choice in the matter.
I think this is important, too. In a society such as ours, however lamentable that is, where to have a severely disabled child would mean one spouse giving up everything to be caregiver and to completely reconfigure other lives around supporting a severely disabled child, maybe for sixty years, with no real help to be expected from the community, except maybe some from the church, I certainly wouldn't say that it's reasonable to expect a couple to be noble enough to face that as if it were not a life-ruining event, as it was in the case of the poor woman APW described. I'm amazed she didn't kill herself. I probably would have.
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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chukovsky
Ship's toddler
# 116
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Posted
Given the risks are: vast majority of cases everything's fine, and in approximately equal numbers the outcome is an indication of a disorder, or a miscarriage, I wonder what people's choice may be based on their experience of either disorder or miscarriage? I'm obviously biased one way and I think I already was, but I know the miscarriage has coloured my view too.
I also know a couple of people who have one child with a disorder (in one case where it couldn't have been diagnosed prenatally) and their first child's problems have given them serious thought about whether to have any more children.
I guess my first thought in such a circumstance would be that, since one of the reasons people have children is so that they have support in their old age, increasingly so as society in general gets less supportive, then you have an extra reason to have more children since you'll need extra support in your old age. If your child had a life-threatening disorder, the reasoning might be different but the outcome would be the same.
But then I suppose others might reason differently: having a child with a disorder already, you don't need any more hard work now or when you are elderly, and you don't need any more heartbreak when your child dies young.
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Posts: 6842 | From: somewhere else | Registered: May 2001
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Arabella Purity Winterbottom
Trumpeting hope
# 3434
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Posted
I was chaplain for a conference a few years ago. The conference was for disabled Christians of all kinds. I felt very privileged to be a part of it, but it was very obvious to me that disability is not something the church deals with well. The stories that were shared there made me fume and I ended up thoroughly politicised. The "they're such happy people" myth couldn't have been knocked on the head harder - there was a tremendous amount of anger, at the same time as there was hilarity, warmth and enthusiasm. You haven't seen anything until you've been part of a Maori powhiri with 30 wheelchairs, 5 guide dogs, any number of mobility aids and assorted clergy in full panoply.
In case you're wondering why I was the chaplain, the conference included mental illness as a disability - one of the keynote speakers was a stunning woman who had been brought to a complete stop by severe depression, as had I in the not too distant past.
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Hell is full of the talented and Heaven is full of the energetic. St Jane Frances de Chantal
Posts: 3702 | From: Aotearoa, New Zealand | Registered: Oct 2002
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Josephine
Orthodox Belle
# 3899
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Posted
The local NPR morning show this morning was about crime and imprisonment. I only heard the first few minutes of it, but one of the speakers argued that crime over the past however many years is down in part because of abortion. The children of young black women disproportionately become criminals. Young black women get a disproportionate share of abortions. Connect the dots, and abortion is a good thing for society, because it eliminates black men who will grow up to be criminals before they are even born.
Is this also prenatal euthanasia? Or has it crossed the line to where we can call it eugenics? Does the fact that the young black women aren't trying to eliminate criminals from our midst have anything to do with what we call it?
I have known blacks that believed that Planned Parenthood and abortion rights in general was eugenic in intent -- they said you don't have to drop by many abortion clinics to figure out that abortions are white doctors killing black babies.
Is the abortion of fetuses with handicaps, or the advocacy or support of the same, any different from the abortion of blacks fetuses, or the advocacy or support of that?
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Laura
General nuisance
# 10
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Posted
Mad Geo started a thread about that study some time back. I think the person who did the study made the point that this didn't mean abortion is a good thing. He was simply noting the association. One could draw other conclusions as well. For example, if poor inner city girls weren't having sex at all until after they finished high school diplomas and not without a husband, and the community supported that, that would reduce the crime rate pretty dramatically as well, too.
Not that I don't take your point. But is bringing a child into a pointless life of poverty, drug abuse and early death pretty bad? Arguably so, or certainly as arguably so as not bringing a severely disabled child into the world.
Certain people in the black community have been arguing for years that pushing abortion services or implanted contraception in the inner city was a form of genocide.
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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Laura
General nuisance
# 10
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Posted
quote:
Originally posted by josephine:
Is the abortion of fetuses with handicaps, or the advocacy or support of the same, any different from the abortion of blacks fetuses, or the advocacy or support of that?
I do think it's different -- a young black woman aborting is probably doing it for similar reasons to any woman who doesn't want a baby but is pregnant. Not because it is black. A person aborting a disabled child is aborting it because it is disabled and would otherwise be wanted.
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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
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Laura:
I do think it's different -- a young black woman aborting is probably doing it for similar reasons to any woman who doesn't want a baby but is pregnant. Not because it is black. A person aborting a disabled child is aborting it because it is disabled and would otherwise be wanted.
You're right. The young black woman isn't aborting the fetus because it is black.
But that brings up another thought. The woman aborting the disabled child is probably a prosperous white woman. Poor black women don't generally have access to amniocentesis and other screening tests.
So will prenatal euthanasia result in disabilities being restricted largely to the poor? The educated, employed, and insured will get screening and prenatal euthanasia. The poor and uninsured will continue to have children with Down syndrome and cleft palate and whatever else the rich no longer have.
If that's the case, what would that mean?
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Laura
General nuisance
# 10
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Posted
quote:
Originally posted by josephine:
So will prenatal euthanasia result in disabilities being restricted largely to the poor? The educated, employed, and insured will get screening and prenatal euthanasia.
Oh, yes, definitely. And the third world, as I pointed out above. There are already tons of diseases that really only the poor suffer from (take malnutrition and related diseases like ricketts, for example). These will just be added to the list of things for poor people.
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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Foolhearty
Shipmate
# 6196
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Posted
And given that it's reasonably likely that children of the prosperous are planned, whereas children of the poor/disenfranchised are likely to be unplanned, what does that mean?
I have read in several places that some 50% of all pregnanices are unplanned. I haven't read anywhere just how this breaks down in terms of economic class.
Since (at least in the US) this seems to be coinciding with a gradual detachment from the idea of providing much by way of social services for anyone at a disadvantage, I wonder what kind of future we face.
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Fear doesn't empty tomorrow of its perils; it empties today of its power.
Posts: 2301 | From: Upper right-hand corner | Registered: May 2004
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Paige
Shipmate
# 2261
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Posted
Apologies in advance for the long post....
I read Barbara Katz Rothman's book when I was in my late 20s, and it very nearly made me decide not to have children.
I wouldn't allow myself to get pregnant until I had answered the question of "Would you terminate if something was wrong?"
Ultimately, I decided that I wouldn't terminate for any reason---and that I wouldn't want a joyful pregnancy marred by the knowledge that something was very wrong. So I didn't have any of the tests, in either of the two pregnancies I carried to term.
What shocked me was the cavalier way that medical personnel approached those tests. It was assumed that your would take the alpha-fetoprotein test (AFP), and no one ever explained that it was a "gateway" test. Taking it means that you can be opening a door to all kinds of other tests---and to the possibility of hard issues and wrenching decisions. But no one ever explained that. They just handed you the lab form and told you they would schedule you for it---they were all a bit shocked when I refused to take it.
There is a lot of pressure in certain places to terminate if you get a "bad" amnio. Research hospitals are the worst---the assumption is that no rational person would want a "defective" baby. When you have just been informed that your baby has Down's or some other problem, and you are at your most vulnerable, to have doctors asking you WHEN you are going to schedule your termination (not "if") can make it nearly impossible to make another choice, unless you have very strong religious objections to abortion.
Having said all of that, I am very sympathetic to those who have had to make the decision to terminate. I had one friend whose daughter was anencephalic, and another whose daughter had both Down's and another condition where her organs were growing outside her body. There was no hope for either of these poor babies, which makes it different than someone who aborts for Down's or spina bifida alone---but having watched the anguish of parents who chose to terminate a wanted pregnancy, I agree with Ruth that no one has the right to sit in judgment of them. I can only trust that God knows their hearts and that grace and mercy will flow to where it is needed.
We can, and should, however, address the societal pressures to create perfect babies and the rabid individualism that leads us to expect only nuclear families to take care of those with disabilities. This has been a wonderful conversation for that---and I appreciate Laura and Josephine's eloquent posts.
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Sister Jackhammer of Quiet Reflection
Posts: 886 | From: Sweet Tea Land, USA | Registered: Jan 2002
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chukovsky
Ship's toddler
# 116
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Posted
quote:
Originally posted by josephine:
So will prenatal euthanasia result in disabilities being restricted largely to the poor? The educated, employed, and insured will get screening and prenatal euthanasia. The poor and uninsured will continue to have children with Down syndrome and cleft palate and whatever else the rich no longer have.
I'd say yes, apart from the smaller group of couples who have had great difficulty getting pregnant and feel this may be their last chance to have children - who may well be older and better off, having had the resources to avail themselves of assisted reproduction.
It is of course a bit different in the UK, where in some areas all women, and in other areas all women over 35, are offered screening for free. But an educated/well-off woman under 35 who wants it might get private screening.
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Posts: 6842 | From: somewhere else | Registered: May 2001
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Laura
General nuisance
# 10
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Posted
A good example of the general societal reaction to differences and how it plays out in the expectation of perfection in children is in a syndicated advice column that appears in our paper, and also I think in some others:
Tell Me About It (Wednesday, August 10)
(free registration required)
An excerpt of the relevant question is:
quote:
My younger son is having some physical and developmental problems, and I'm just not dealing well with it.
I can't stop worrying, and don't enjoy being with other parents and kids because all I see is what he's not able to do yet. I'm taking him to physical and educational therapy twice a week and I hate every minute of it.
I just can't get past that I don't want this (and I can't tell you how evil, selfish and horrible I feel to say that) and that it's not fair. How can I stop feeling bad for myself and start being positive, supportive and helpful to my son instead?
The response given to this question is pretty good, but I think a lot of people would probably abort if told in advance about this sort of thing as well -- developmental problems, I mean. In fact, I find that I'd be far more sympathetic (I'm talking about gut-level stuff here) to the decision to terminate for severe retardation or severe autism or severe schizophrenia (if they could identify these genetically by amnio) than for any physical defect, because these conditions far more affect a kid's ability to be and function in a normal human social world than almost any physical defect. So our own prejudices feed into this heavily, don't they? So pre-natal counseling can't even identify the things that worry a lot of people the most, even while supporting an environment in which tolerance for any difference is waning. It's a terrible Catch - 22, isn't it?
[ 10. August 2005, 15:02: Message edited by: Laura ]
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Love is the only sane and satisfactory answer to the problem of human existence. - Erich Fromm
Posts: 16883 | From: East Coast, USA | Registered: Apr 2001
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Laura:
The response given to this question is pretty good, but I think a lot of people would probably abort if told in advance about this sort of thing as well -- developmental problems, I mean.
I'm sure you're right. But think about the implications. I'll just use autism as an example, because that's what I'm most familiar with.
We know that autism is a complex multi-gene trait. It isn't an either/or diagnosis like Down Syndrome. It comes in flavors and shades.
Families that include people with an autism spectrum diagnosis also include far more than their share of engineers, research scientists, and other technical people. Many people in technical professions could reasonably be described as just a little bit autistic. They aren't clinically diagnosable, but they clearly have tendencies in that direction. They presumably have a few of the autism genes, but expressed in a way that allows them to function fairly normally.
What affects the expression of those genes? Probably a combination of environment, IQ, and what particular combination of autism genes got sorted out to you.
So if people are really afraid of having to rear an autistic child, and if we developed screening tools so that we could abort 90% of people with autism, as we currently abort 90% of people with Down Syndrome, what would that mean for the rest of us?
Even if the test were relatively sophisticated, it would undoubtedly identify people like Temple Grandin as severely autistic. I'm sure it was no picnic for her parents when she was a child. She was difficult and expensive to raise. But with intense, appropriate intervention, she grew up into an adult who has made amazing contributions to our society. Do we really want a world where we don't have people like Temple?
Or, more to the point for me, do we want a world where we don't have people like my father, or like my two younger sons? My father grew up in a world where it was easier to be a high-functioning autistic person. He knew that he was different from other people, but didn't know how or why until my sons were diagnosed. Then he read up on their diagnosis, and recognized himself.
He was a product safety engineer. Among other things, he wrote the standards and invented the equipment used to test school furniture when the safety of school furniture first became an issue. His contribution to his field, and to the rest of us, was enormous.
The world my sons are living in is not as kind to eccentric people. It's a problem for them, for me, for Alex. But do we want to solve this problem by eliminating people like them? Or by doing whatever is necessary so they can live in this world?
Hans Asperger, the German physician who first described Asperger Syndrome, chose the latter option. He was convinced that the Nazis would soon start rounding up his boys and killing them. The boys at the residential facility where he worked were difficult boys by anyone's defintion. Intellectually, they were fine. But they didn't fit in, they could be violent and threatening one moment, charming the next. They had intellectual fixations, perseverations. When they had a problem to solve, they wouldn't let go, whether the problem made any sense to anyone else or not. He didn't really understand them. But he loved them. So he described them, and described their value to society. He published papers about them, hoping that by making them more familiar, by pointing out the advantages of their eccentricities, if their eccentricities were properly managed, he could save them from the fate of other disabled persons in Germany.
He did.
But what are we going to do?
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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chukovsky
Ship's toddler
# 116
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Posted
Incidentally, although it's possible to determine if a child has Down Syndrome prenatally, it is also a disorder that's very hard to predict: only about 15% of adults with the syndrome would be INcapable of independent living/work given appropriate training and education, but an either/or test doesn't tell you which. Many children with DS can perform in the low normal range at school.
(As I'm speaking at a conference on DS in a few weeks' time, I thought l'd better inform myself a bit. I should add that the conference is on DS but my talk is on some research with other children!)
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Posts: 6842 | From: somewhere else | Registered: May 2001
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Josephine
Orthodox Belle
# 3899
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Posted
So we're aborting 90% of the fetuses diagosed with Down Syndrome, when 85% of them could function as adults in the normal range?
I didn't know that. Do the doctors who do the screening know that?
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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!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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chukovsky
Ship's toddler
# 116
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Posted
Have a look at the survey Adeodatus linked to: when the syndrome was accurately described with its presenting features, rather than just labelled "a serious condition", far fewer of the ethicists supported prenatal testing and termination. There is a perception of the syndrome as very serious: only 15% need "a much higher level of daily assistance" according to the document below.
Because of improved therapies and education (primarily due to mainstreaming), the outlook for children and adults with DS is so much better than it was in the past. See here, and the pdf file you can download from there, for more information. Particularly telling is the description of the author's daughter: because she is in her 30s, when she was a baby and a child, almost nothing was expected of her. She didn't walk until she was 4 1/2 and she couldn't read or identify coins when she left school. However, she is now working and living independently. She needs help with some things, but not an overwhelming amount of help.
Nowadays, children with DS are expected much more to achieve the same things as other children and, surprise surprise, they do. I doubt whether any parents with screening decisions to be made are given that leaflet, though.
[ 10. August 2005, 19:59: Message edited by: chukovsky ]
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Foolhearty
Shipmate
# 6196
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Posted
I have no statistics to offer, only experience working in the field of developmental services.
I think that 85% figure (of people with Down Syndrome functioning in the normal range) seems high.
The state I live in has a categorical state definition of "development disability" (annoyingly enough, as the federal definition was originally coined to obviate categories altogether and instead make it possible for persons with disabilities to become eligible for assistance and services on the basis of functional ability). One of the categories is Down Syndrome.
I have known people with DS to go to college, but this is quite rare. Most people with DS now are mainstreamed in school in my state, but the majority of people I see continue to need fairly substantial services and assistance, and this is due to the disability rather than to barriers resulting from lack of societal acceptance.
The physical anomalies accompanying DS present real problems. An enlarged tongue/small jaw can make communication through speech very difficult, and most "non-disabled" people do not learn Sign. So even though some folks with DS Sign well, they still are cut off from their communities. The heart difficulties often associated with DS can be a barrier to getting a driver's license even where learning differences do not pose issues.
And supported employment -- and this in a state which was among SEP pioneers -- continues to offer placement in (I'm sorry, but this is a hotbutton issue for me) Food'n'Filth industries, which (A) do not offer a valued place in society to the employee, and (B) do not offer anything like a living wage - even to those supporting the employee with the disability.
I am not saying that this means people with DS should be aborted. But I also think that at least half of all the people I've known with DS require fairly substantial amounts of assistance throughout the lifespan.
In addition, people with DS often experience a shortened lifespan with heightened levels of disability toward the end, and have a significantly higher-than-average incidence of Alzheimer's and dementia as they age.
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Fear doesn't empty tomorrow of its perils; it empties today of its power.
Posts: 2301 | From: Upper right-hand corner | Registered: May 2004
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Arabella Purity Winterbottom
Trumpeting hope
# 3434
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Posted
Yes, I thought that figure was very high, too. The high school my partner teaches at has a special needs unit which is usually about half girls with Downs Syndrome. In the 17 years we've been associated with the school, not one of the DS girls has done any exam level study (Years 11-13), and I'm fairly sure there aren't too many who have been fully mainstreamed at lower levels of high school. And that's a school that busts a gut to mainstream.
I did come across a very engaging young man with DS when I visited the library of the local CCS (Crippled Children's Society, now only known by its initials due to terminology moving on). He was quite numerate and moderately literate and knew his way around the library system a real treat. The librarian told me that he needed a bit of supervision but could do most of the usual tasks of a library circulation assistant, and was also passable at copy-cataloguing.
Our local bus company employs a number of intellectually disabled adults to clean buses. Likewise the local police for their cars. From what I gather the employers make a big fuss of these employees and give them lots and lots of job satisfaction. We have a group house two doors down from our house and the people there work for the bus company and love it. They get to wear the company uniforms and get free travel on the buses, they know all the bus drivers, and from the discussions I overhear think themselves equal to kings and queens.
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Hell is full of the talented and Heaven is full of the energetic. St Jane Frances de Chantal
Posts: 3702 | From: Aotearoa, New Zealand | Registered: Oct 2002
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Arabella Purity Winterbottom
Trumpeting hope
# 3434
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Posted
This thread has got me thinking about something else that made me extremely angry at the time. One of my cousins, who is about 15 years younger than me, has Downs syndrome, and has the Downs' look very strongly. When she was going through adolescence, her parents decided to put her through endless plastic surgery to make her look more normal. Her father told us it was so that she could marry a normal man.
Uh? She was not a high functioning person - her general social development was stuck around the 7-8-year-old level - and she typified the Downs stereotype of being a very happy, loving person. My mother and I were horrified that her parents felt that there was any kind of possibility of her marrying a "normal" man - it seemed likely to us that any man wanting to marry her would be very not normal.
But then the whole idea of the plastic surgery was abhorrent in the first place. And it certainly didn't change her intellect or social functioning.
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Hell is full of the talented and Heaven is full of the energetic. St Jane Frances de Chantal
Posts: 3702 | From: Aotearoa, New Zealand | Registered: Oct 2002
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chukovsky
Ship's toddler
# 116
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Posted
Have a look at the information I linked to. I didn't say 85% functioning in the normal range (which, in the UK, would not be college anyway - about 30% go to university here), I said 85% living or working independently - as the information says, that can include sheltered accommodation or some support in regular accommodation or work, but the idea that the vast majority of people with DS need continuous care and can't do anything for themselves is wrong.
Some people with DS are in the lower normal range at school. Many non-disabled children get no paper qualifications but still manage to get a job.
Most adults with DS have learned to speak. More could learn to speak - the functioning of adults with DS in current-day society is not a good representation of the potential of children with DS. Most adults went to special schools where they were not expected to learn very much. Most children now go to mainstream schools where they learn a lot more than children did in the past. Yes, the lifespan is shortened but by about 20-30 years - not by about 50 years as for children with CF or sickle cell - it's about the same shortening as with Type 2 diabetes, also genetic, and also leading to physical dependency and risk of dementia (through multiple small strokes) in later life.
Although I don't particularly agree with surgery for aesthetic reasons, there are good arguments for reducing tongue size to make speech easier: not sure which side the research has come down on in the end, as I say it's not my speciality.
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Posts: 6842 | From: somewhere else | Registered: May 2001
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Foolhearty
Shipmate
# 6196
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Posted
quote:
Originally posted by chukovsky:
Have a look at the information I linked to. I didn't say 85% functioning in the normal range (which, in the UK, would not be college anyway - about 30% go to university here), I said 85% living or working independently - as the information says, that can include sheltered accommodation or some support in regular accommodation or work, but the idea that the vast majority of people with DS need continuous care and can't do anything for themselves is wrong.
Some people with DS are in the lower normal range at school. Many non-disabled children get no paper qualifications but still manage to get a job.
Most adults with DS have learned to speak. More could learn to speak - the functioning of adults with DS in current-day society is not a good representation of the potential of children with DS. Most adults went to special schools where they were not expected to learn very much. Most children now go to mainstream schools where they learn a lot more than children did in the past. Yes, the lifespan is shortened but by about 20-30 years - not by about 50 years as for children with CF or sickle cell - it's about the same shortening as with Type 2 diabetes, also genetic, and also leading to physical dependency and risk of dementia (through multiple small strokes) in later life.
Although I don't particularly agree with surgery for aesthetic reasons, there are good arguments for reducing tongue size to make speech easier: not sure which side the research has come down on in the end, as I say it's not my speciality.
Thanks for the clarification, chukovsky. I agree with this statement: "the idea that the vast majority of people with DS need continuous care and can't do anything for themselves is wrong."
I should add, though (and all of my experience with this so-called "population" has been within the border of my home state) that mainstreaming has been going on here for a generation. Very few of the DS folks I've known were ever in special schools or even in special classes (the few who have were older individuals). This state stopped institutionalizing people with disabilities in the 1970s and officially closed its only public institution in 1990, once the last few "inmates" had gone to live in community settings. This is a rural state; few school districts could ever afford to set up separate classes for kids with disabilities.
I know this is tangential to the discussion, but thought the context behind my remarks above was relevant. Few people with DS need continual care; most can do a great deal for themselves with good training and support. But it's also true that most require at least some support, and that includes support with employment, managing life activities like budgeting and cooking, and sometimes with decision-making.
As a result, part of the decision-making process for someone undergoing prenatal testing for potential disability in the fetus has to be a consideration of what commitment of time, energies, and other resources the parents can make to this child's life, and possibly, what commitment will be asked of the larger community.
The crux of this issue, I believe, is that child-bearing has in fact, quietly and with no fanfare, become a real, practical choice.
For most of womankind throughout history, this has not been true. (It may not the case for many Third World women even now.)
And because it is now a choice, the relationship between the parent and the child-to-be is not the only change we face. We also face changes in the relationship between family and community (where communities provide support to children and adults with significant levels of disability).
Attending school district meetings in small towns in my state can be a shocking experience, as neighbors begin verbally mauling one another about the costs involved in educating one family's child or children. It is horrifying to see how thin the veneer of "community" sometimes is.
Sorry for the long post.
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Fear doesn't empty tomorrow of its perils; it empties today of its power.
Posts: 2301 | From: Upper right-hand corner | Registered: May 2004
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Arabella Purity Winterbottom
Trumpeting hope
# 3434
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Posted
Sorry chukovsky, I understand what you're getting at, now, and I agree.
My cousin could talk perfectly OK - in fact, it was hard to get her to be quiet! No, the surgery was on her face, to make her look less like a person with Downs Syndrome. It didn't work, and what we were worried about was that a nice, very happy, contented person was being told that their face wasn't good enough. She got completely hung up about her looks.
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Hell is full of the talented and Heaven is full of the energetic. St Jane Frances de Chantal
Posts: 3702 | From: Aotearoa, New Zealand | Registered: Oct 2002
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Rat
Ship's Rat
# 3373
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Posted
There was an article on the radio this morning about pre-pregnancy selection. Couples who are capable of unaided conception but who know they carry a gene for a serious condition can opt for an 'in vitro' process where embryos are created then screened for the faulty gene. Only embryos without the gene are implanted into the woman's womb.
Do people feel the same about this as about prenatal screening\euthanasia? Is it eugenic?
I'm not sure how I feel - I wouldn't blame someone for taking this route, but I just am not comfortable with it. It was one of the options open to me had my dad's gene been identifable, but I thought at the time I would not have been able to reconcile myself to the process. I'm not entirely sure why, it just doesn't seem right. I think it is the creation and destruction aspect - if there was a way of ensure only healthy embryos were conceived I doubt if I'd feel the same discomfort.
This has been a standard procecedure for some time for some serious, inevitable diseases. This morning's discussion was about the ethical implications of extending this process to screen for genes for which the bad outcome is not guaranteed. The example used was the breast cancer gene which greatly increases the risk of the disease, but does not make it inevitable. It is now possible to screen for conditions like this.
Again, this makes me very uncomfortable. I can see why someone with the gene might want to do it, but it just doesn't seem right to me in my guts.
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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]
Posts: 5285 | From: A dour region for dour folk | Registered: Oct 2002
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chukovsky
Ship's toddler
# 116
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Posted
I'm not sure where I stand on this, Rat, but this article talks about this: preimplantation genetic diagnosis. It also mentions preconception diagnosis/selective conception, but says that it would probably be practical only for gender selection.
I am not entirely sure about gender selection for the purposes of completing a family/handing on the family name/avoiding paying dowry/bride price*, but it seems like a much more ethical way of avoiding handing down a sex-linked fatal illness. Not sure about sex-linked traits that are non-fatal, though.
*these work in the opposite way so girls are more valuable in some societies whereas boys are in others.
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