Scientific proof that we live in a warmer and more caring universe

November 29th, 2008 by Ben Goldacre in bad science, badscience, bbc, independent, mail, media, mirror, times | 170 Comments »

Ben Goldacre
The Guardian
Saturday November 29 2008

As usual, it’s not Watergate, it’s just slightly irritating. “Down’s births increase in a caring Britain”, said the Times: “More babies are being born with Down’s syndrome as parents feel increasingly that society is a more welcoming place for children with the condition.” That’s beautiful. “More mothers are choosing to keep their babies when diagnosed with Down’s Syndrome” said the Mail. “Parents appear to be more willing to bring a child with Down’s syndrome into the world because British society has become increasingly accepting of the genetic abnormality” said the Independent. “Children’s quality of life is better and acceptance has risen”, said The Mirror.

Their quoted source was no less impeccable than a BBC Radio 4 documentary presented by Felicity Finch (her what plays Ruth Archer), broadcast on Monday. “The number of babies with down syndrome has steadly fallen, that is until today, when for the first time ever that number is higher than before, when testing was introduced.” I see. “I’m keen to find out why more parents are making this decision.” They’re not. “I was so intrigued by these figures that I’ve been following some parents to find out what lies behind their choice.” Felicity. Wait a second. The entire founding premise of your entire 27 minute documentary is wrong.

There has indeed been a 4% increase in Down’s syndrome live births in England and Wales from 1989 to 2006 (717 and 749 affected births in the two years respectively). However, since 1989 there has also been a far greater increase in the number of Down syndrome foetuses created in the first place, because people are getting pregnant much later in life.

What causes Down syndrome? We don’t really know, but maternal age is the only well-recognised association. Your risk of a Down syndrome pregnancy below the age of 25 is about 1 in 1600. This rises to about 1 in 340 at 35, and 1 in 40 at the age of 43. In 1989 6% of pregnant women were over 35 years of age. By 2006 it was 15%.

The National Down Syndrome Cytogenetic Register holds probably the largest single dataset on Down syndrome, with over 17,000 anonymous records collected since 1989, and one of the most reliable resources in the search for patterns and possible causal factors. They have calculated that if you account for the increase in the age at which people are becoming pregnant, the number of Down’s Syndrome live births in the UK would have increased from 1989 to 2006: not by 4%, but from 717 to an estimated 1454, if screening and subsequent terminations had not been available.

Except, of course, antenatal screening is widely available, it is widely taken up, and contrary to what every newspaper told you this week, it is widely acted upon. More than 9 out of ten women who have an antenatal diagnosis of Down’s syndrome decide to have a termination of the pregnancy. This proportion has not changed since 1989. This is the “decisions” that Felicity Finch, Radio 4, the Mail, the Times, the Mirror, and the rest are claiming more parents are taking: to carry on with a Down syndrome pregnancy. This is what they are taking as evidence of a more caring society. But the figure has not changed.

Crass and insensitive moral reasoning helps nobody. If I terminate a Down syndrome pregnancy, is that proof that society is not a warm caring place, and that I am not a warm caring person? For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it. This would have been true even if their figures had been correct, but as is so often the case, for those with spare flesh to wave at strangers, their facts and figures are simply incorrect.

The National Down Syndrome Cytogenetic Register felt obliged to issue a thorough clarification. The thoroughly brilliant “Behind the Headlines” service on the NHS Choices website took the story to pieces, as they so often do, in their daily round up of the real evidence behind the health news (disclosure: I had a trivially tiny hand in helping to set this service up).

Everybody ignored them, nobody has clarified, and “Born With Down’s” remains Radio 4’s “Choice of the Day” on the Radio 4 website.

Please send your bad science to ben@badscience.net


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170 Responses



  1. eyalbd said,

    November 29, 2008 at 9:39 am

    Down’s Syndrome is caused by a trisomy, complete or partial, of chromosome 21.
    The development of the egg is only completed upon fertilization by the sperm. until then it is stuck in the middle of metaphase II. Meaning – the ovum still has two copies of every chromosome. Only when the sperm enters the ovum, the two copies are separated (and one copy is excised) and meiosis II is completed.
    The cause of Down’s Syndrome is usually nondisjunction – the chromosomes don’t seperate properly in division, and the egg is left with two maternal copies of chromosome 21 instead of one.

    Now, why specifically the nondisjunction is more prevalent in older women, I don’t know. Neither do I know which gene and what biochemical pathway causes which symptom. I don’t know if it’s known.
    But saying nobody knows what causes Down’s Syndrome and that maternal age is the only association is, I think, misleading.

  2. John Smith said,

    November 29, 2008 at 10:28 am

    Excellent piece.

    For a split second I put myself in the shoes of those parents with a DS foetus, and I must admit that I couldn’t see much beyond terrible and agonizing heartache. It must be so hard to make a decision, and my heart goes out to those people (of course, there’s another argument for you to chew over, Ben — Is ignorance bliss? Is scientific ignorance a luxury? Sounds like it in this case.)

    You could say that we expect more of the BBC than to broadcast poor quality stuff like this, but that’s what nearly everybody is saying about the corporation nowadays. I just wish it wasn’t representatives of our particular generation who, after a hundred or so years, are finally destroying the BBC, largely through incompetence.

  3. wewillfixit said,

    November 29, 2008 at 10:35 am

    Ignore last post – didn’t read properly.

  4. wewillfixit said,

    November 29, 2008 at 10:45 am

    The figures now suggest to me that there must have been a decrease in women choosing prenatal testing, or am I completely wrong? If the % of prenatal dagnosis leading to termination has stayed the same, but the % of total DS dagnoses leading to termination has gone down, then there must be more cases of DS that are only diagnosed after birth.

    I can understand this – I chose not to have the screening test as I was sure I would keep a DS baby, and knowing the potential diagnosis before birth wasn’t that important to me given that there is a small increased risk of miscarriage following amnio or CVS.

  5. julie oakley said,

    November 29, 2008 at 10:58 am

    I love your column but in the interests of scientific accuracy (and to reassure older parents) could you please show the other equally accurate but far less worrying statistics about the possibility of having a Downs syndrome child at particular ages. ie percentages.

  6. wewillfixit said,

    November 29, 2008 at 11:07 am

    Julie, here’s a table with the risk of DS by maternal age:

    www.leeds.ac.uk/lass/screening%20for%20Down's.htm

  7. CDavis said,

    November 29, 2008 at 11:59 am

    Oh jeezers…

    Is it just me, or is a great deal of thinking about this issue predicated on the notion that ‘Downs symdrome babies’ grow into ‘Downs syndrome children’, and then somehow disappear off the radar?

    What happens when the – predominantly older – parents are no longer around to exercise their improved caring and warmth?

  8. emen said,

    November 29, 2008 at 12:04 pm

    Julie, as far as I know the percentages in the post are accurate.

    But look at it this way: at the age of 43, your chances of NOT having a baby with Downs Syndrome is 97.5%. That is pretty high, I think.
    The INCREASE is dramatic, and because this is an abnormality that CAN be screened, it gets more attention.

    The chances of having an early miscarriage in first pregnancies is an estimated 1 in 3, but there is nothing you can do about it, so you don’t hear that very often.

    It reminds me (a bit) of a contraception issue. The word “copper coil” often gets associated with unbearably strong periods. But when you look at the actual numbers, it’s something like 5% of women who have to have it removed because of that – others are OK with it, it’s just that they don’t walk around telling people “You know what, I have a coil. And it’s good.”

  9. frankbuckley said,

    November 29, 2008 at 12:24 pm

    Ben –

    In pursuit of good science, perhaps you should also pay more attention to your statistics.

    Annual birth numbers tells us little. You need to look at live births of babies who have Down syndrome as a proportion of all live births.

    The 2006 NDSCR data you quote is clearly described as provisional and contains a large proportion of ‘unknown outcomes’ (following a recorded prenatal diagnosis) – 293 out of 1132. If your read the NDSCR 2006 Report, you will note that:

    “Assuming that their [unknown outcomes] proportion terminated remains as before 2006, the likely number of Down syndrome live births in England and Wales in 2006 would have been 767 (46+703+6% of 293), a prevalence of 1.2 per 1000 livebirths occurring in England and Wales in 2006.”

    Using the adjusted figure, the rise in numbers you refer to should be correctly stated as being 7% – not 4%. The NHS, NDSCR and you should take more care with their statistics.

    Turning to (the more informative) live birth rates: Prenatal blood tests have been the most common form of screening since 1992 and are now offered to every pregnant woman. During this period, while screening uptake as increased (as a proportion of all pregnancies), the live birth rate has rise from 9.2 in 10,000 in to 11.5 in 10,000 in 2006 – up 25%. If you look at the last decade free of provisional data, the rise is 33%.

    So, birth rates are rising and rising substantially. As you correctly point out, this is not necessarily due to changing attitudes and changing maternal age patterns are a major influence. However, the static ~91% rate of abortions following prenatal diagnosis figure sheds no light whatsoever on the issue of parental attitudes to screening. This is the proportion of women who have opted for screening, received a positive screen, opted for (risky) invasive diagnostic tests and received a confirmed diagnosis. Presumably (if the NHS are doing a reasonable job of supporting informed consent), few would choose risky invasive diagnostics if they were not planning to abort given a confirmed diagnosis. This says nothing about all the other choices being made in the screening process.

  10. Joe Dunckley said,

    November 29, 2008 at 12:42 pm

    eyalbd: if we’re going for “causes” in biology and medicine, it’s always great fun to go down the evolutionary causes path.

    Anyway, there are several hypotheses for why n-d is seen more in eggs of older women (at least, those eggs which survive and develop). The body has its own systems for doing genetic tests and abortions: fertilised eggs are checked for abnormalities, and if a serious problem is found, the egg is discarded as menstrual cycle carries on. The evolutionary just-so-story proposes that women approaching 45 just can’t risk throwing away what might be their last chance at producing babies, and the body lowers the threshold.

  11. Joe Dunckley said,

    November 29, 2008 at 12:45 pm

    argh. i mentioned disclaimers about evolutionary just-so-stories, but stupidly picked angled brackets to enclose them. :(

  12. muscleman said,

    November 29, 2008 at 12:51 pm

    Eyalbd, it is entirely possible that trisomy 21 is prevalent because it is the one that is less pathological. Other trisomies not allowing a viable foetus. This is almost certainly one of the reasons why fertility overall drops with age. It’s not so much a lack of ovulation as the lack of viable embryos. All sorts of cellular processes begin to fail with age, particularly those associated with dna damage repair etc. So it is not surprising that chromosome counting etc goes as well.

    Remember that once formed nascent eggs do not undergo periodic meitosis so the cellular dna proteins do not get turned over as often as say skin cells do, or liver. I have seen data that many postmitotic cells like neurons and muscle have chromosomal abnormalities.

    Sperm avoid this for longer since they are created and are turned over frequently. Otherwise both parents would contribute chromosome abnormalities with age.

  13. The Gonzo Girl said,

    November 29, 2008 at 1:23 pm

    They’re missing the point, when they think it’s about “caring”.
    It’s about the misconception, that people with Down Syndrome can’t live meaningful lives, so they’re better not born in the first place.
    For whatever reason the number of Down Syndrome births rises, it’s good news, because how is someone going to change their views on Down Syndrome, if one never meets a person with it?

  14. misterjohn said,

    November 29, 2008 at 1:40 pm

    www.leeds.ac.uk/lass/screening%20for%20Down's.htm

    may be better.
    If not I give up on using html..

  15. The Nameless said,

    November 29, 2008 at 2:01 pm

    Hello, I’ve been killing some time reading your site, and I’d just like to say that it’s very amusing. I particularly enjoy the comments from true-believer types with their wondrous “How can it be a placebo? It makes me feel better!” logic.

    As for the present issue: how are prospective parents supposed to tell whether society is more tolerant of people with Down’s Syndrome, anyway? Most of them wouldn’t know anyone with it, and it’s not exactly a common dinner-table topic*.

    It does appear that the media (which often mistakes itself for society) has become more accepting of the condition, hence their promoting the slight increase as a good thing. Which would be lovely, if not for the implication that parents who abort an affected foetus are only doing so out of cowardice or prejudice.

    *Disclaimer: I’m not British, but I doubt you lot are THAT different.

  16. CDavis said,

    November 29, 2008 at 2:52 pm

    @9 Oh, quite. And how can we learn to accept smallpox victims if these meddling WHO people have eradicated the disease?

  17. BobP said,

    November 29, 2008 at 3:22 pm

    It’s the apostrophe in the URL. Try this version

    tinyurl.com/screeningfordowns

    (links through to Leeds Uni)

  18. stavros said,

    November 29, 2008 at 3:25 pm

    NHS Choices is one of my favorite sources! Very good job indeed. Thanks for having a trivially tiny hand in helping to set it up!

  19. gimpyblog said,

    November 29, 2008 at 4:44 pm

    I have seen data that many postmitotic cells like neurons and muscle have chromosomal abnormalities.

    Yes, i think this is quite common in syncytia because the nuclei undergo different rates of mitosis or, in some species, arrest during mitosis once a certain developmental stage is reached.

    If anyone is interested I found this review which explains the biology behind aneuploidies and speculates as to why the risk increases with age for women.
    humupd.oxfordjournals.org/cgi/content/full/14/2/143

  20. MJ Simpson said,

    November 29, 2008 at 6:30 pm

    There is a half-page piece about this in the Daily Mail today, basically using it as an excuse to have a go at the BBC but nevertheless getting the facts right. Can’t find an online version.

  21. igb said,

    November 29, 2008 at 11:08 pm

    My wife was offered the then fairly new AFP test for our first child, which she took. After all, it’s a maternal blood test, what can go wrong? We can make any decisions before the amnio, after the amnio, etc.

    Later, we were talking to some friends who were having a child somewhat later in life for both of them, who had declined it: the punchline of any testing for Down’s is an abortion, went their logic, so if you wouldn’t have the abortion, then there’s no point is starting down the road. Conversely, other friends again having children when older had decided up front that they would have CVS testing, presumably having decided what they’d do with the result.

    For our second child my wife declined AFP. We were still by then only 34, so this wasn’t quite the statement it would be at 42. The poor specificity of the test and the possible consequences of the more accurate tests were a slight factor, but actually not quite the point: if you’ve decided up front that Down’s isn’t, for you, grounds for abortion, then the test is simply a distraction.

    I’d been at school with someone whose younger sister had Downs, and whose father, who also worked with my father, had been very active in working to improve outcomes (I think in fact he was the founder of the Down’s Syndrome Association, and he got an MBE for his work). And my wife had been tutored at university by David Lodge, so we were aware of his work on long-term care — Lodge’s son has Down’s — so we knew something of the later life issues too.

    I’m absolutely opposed to the anti-abortion lobby, and I wouldn’t for a second question other peoples’ decisions. And there’s plenty of congenital conditions that my wife and I would have regarded as grounds for abortion. But in this case we reckoned it was a borderline risk of something we felt was on the moral borderline, so we — knowingly — decided not to get involved in the testing. Had we gone on to have another child later in life when the risks were rising sharply, that would be when the strength of our opinions would have been more sharply tested, perhaps.

  22. The Nameless said,

    November 30, 2008 at 3:32 am

    “For whatever reason the number of Down Syndrome births rises, it’s good news, because how is someone going to change their views on Down Syndrome, if one never meets a person with it?”

    So… um…. would you be opposed to ANY way of lowering the Down’s Syndrome birth rate? I mean, if it could be done by drinking green tea (or something equally unlikely)?

    I’ve heard this argument that the more disabled people there are, the better off they’ll be, before, and I find it to be quite a leap in logic. You could just as easily say that they’re more likely to be seen as a burden. Your media is taking a warm-and-fuzzy view at the moment, but I’d hardly count on that to last.

  23. The Gonzo Girl said,

    November 30, 2008 at 4:36 am

    ^^
    And to avoid people like me being seen as a burden, we must be eradicated, as this will make our disabilities more tolerable.
    Is this what you call logic?
    And why are you mentioning green tea?
    And why is it *my* media?

    @CDavis
    “Oh, quite. And how can we learn to accept smallpox victims if these meddling WHO people have eradicated the disease?”

    If you think mental retardation is as bad as smallpox, you should work on your own intellectual deficits.

    “What happens when the – predominantly older – parents are no longer around to exercise their improved caring and warmth?”

    Oh, I see, only people, who can support themselves have a right to exist then.
    I’ve heard that argument before, from the senior citicens in my country.
    I’m German, you see.

  24. frankbuckley said,

    November 30, 2008 at 10:55 am

    Ben Goldacre is partly right and partly wrong:

    blogs.downsed.org/frank/2008/11/informed-choice.html

    He, the NHS and the “brilliant Behind the Headlines service” are also misleading in their presentation of the statistics.

    Ironic, given Ben would usually criticise exactly this sort of sloppiness…

  25. julie oakley said,

    November 30, 2008 at 12:59 pm

    Emen that is precisely the point I’m trying to make. The chance of not having a Down’s Syndrome child at any age is pretty low and yet even when the chance of having a Downs Syndrome child is lower than the chance of losing the child through having an invasive amniocentesis test, our NHS seem to think that having a Down’s Syndrome child is such a tragedy that mothers are encouraged to have the test.
    Mothers should be told that there are only two reasons for having tests – either because you intend to have an abortion if the child has Downs syndrome or because you would like to be prepared before the birth and in both cases are prepared to take the tiny risk of losing a perfectly healthy child.
    I know it’s unscientific and emotional but ask most people and they would feel far less likely to be at risk of having a Downs syndrome child if they were given the statistics in percentage terms and especially the percentage chance of not having a Downs Syndrome child. I too feel that these decisions are difficult and personal and are up to the parents, however it seems to me that the NHS has a pro-abortion agenda because the statistics are always given as 1 in whatever which often encourages the terrified mothers to have amniocentesis tests.

  26. emen said,

    November 30, 2008 at 3:23 pm

    Julie,
    I agree with you entirely about presenting the statistics.
    Some women feel they are scared into having babies while they are in their thirties if only the “increase” or “risk” is highlighted, not the actual percentage.

    Do the NHS actually encourage the mothers to have the amnio, when they receive the “high risk” blood-test result? What happens then? Do they get a “leaflet” or something, do you know?

    Frank Buckley, so, where are we then with the original post? :-)The BBC were wrong because they just assumed the rise is due to more parents deciding to keep babies with Downs. But Ben is wrong, as well, because he missed the point that some parents choose not to have the test at all, and he just looked at the 9/10 being static?
    Or am I getting totally confused now?

  27. The Nameless said,

    November 30, 2008 at 3:32 pm

    “And to avoid people like me being seen as a burden, we must be eradicated, as this will make our disabilities more tolerable.
    Is this what you call logic?”

    No, but then that’s not what I said. I merely pointed out that an increase in the number of people with Down’s Syndrome might not automatically make them more accepted.

    Look, the last thing I want is to start a flame war with you. I’m sorry to hear you have a disability, Gonzo Girl, and I can’t begin to guess what problems you’ve faced, but please don’t project your negative feelings onto me.

    “And why are you mentioning green tea?”

    To inject a bit of whimsy into the other point I was trying to make, which is that ANY measure to cure or prevent disease will, if successful, reduce the number of sick and disabled people. This is the same point, I believe, that CDavis was making about smallpox vaccinations.

    “And why is it *my* media?”

    *shrugs* Because I mistakenly assumed you were British, that’s all.

    .

  28. kim said,

    November 30, 2008 at 7:39 pm

    A couple of people have talked about not testing for Down’s on the basis that they wouldn’t abort a Down’s baby. That’s fine, but here’s what happened to a friend of mine.

    She didn’t test for Down’s at 12 weeks because she thought she wouldn’t abort a Down’s baby. Then at her routine 20-week scan the doctors found that the baby had Down’s. Down’s babies often had heart problems and her baby’s heart problem was so severe that they predicted it would die within a few hours of being born. They advised her to abort, which she did. Because the pregnancy was so advanced, she had to have an injection to kill the foetus and then go through labour to give birth to a dead foetus. It was an extremely traumatic experience.

    I mention this simply to point out that while people talk about Down’s babies leading happy, relatively normal lives, some Down’s babies do have terrible health problems – Down’s covers a very wide spectrum.

  29. The Gonzo Girl said,

    November 30, 2008 at 10:04 pm

    ^^
    True, but if it can be tested in advance, you can still give Down’s Babies a chance, that don’t have such severe heart problems.

    @Nameless
    How kind of you to pity me instead, and assume I have negative feelings, because of a disability.
    The number of “sick and disabled” people doesn’t need to be reduced, the sick need a cure, and the disabled need to be treated with more respect.
    Is this such a foreign concept to some of the commentors here?

  30. tom1 said,

    December 1, 2008 at 1:08 am

    Gonzo Girl,

    I may be going out on a limb here, but I should think that Nameless assumed you had negative feelings because of the strength of your response.

    Why do the sick need to be ‘cured’, but the disabled not? If I become disabled I want people to try to improve my condition AND treat me with respect.

    Tom

  31. The Gonzo Girl said,

    December 1, 2008 at 3:05 am

    It is a sign of disrespect, when people think you need to be “improved”, as this clearly implies that you are defected.
    People with disabilities have thousands of other abilities, only dead people are really “disabled”, that’s why a lot of deaf people reject hearing aids, most Autistics don’t want a “cure” and people with Downs Syndrome don’t see themselves as defected either.

  32. The Gonzo Girl said,

    December 1, 2008 at 3:09 am

    PS:
    I think the link doesn’t work, so here is what I meant to link to:

    “…the Canadian Down Syndrome Society, defining Down syndrome:

    Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.

    Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it. Down syndrome itself does not require either treatment or prevention.”

    Quote from Michele Dawson’s blog “The Autism Crisis”

  33. The Nameless said,

    December 1, 2008 at 3:33 am

    Gonzo Girl, this is getting silly. Down Syndrome is a major abnormality which causes mental impairment and all kinds of health problems. The fact that it occurs “naturally” is a red herring.

    If you would calm down and read my previous posts, you would see that I’ve tried to use neutral language, e.g. “affected foetus” not “defective foetus”.

    I never meant to hurt you; however, you seem determined to be hurt… in fact it’s starting to look as though your intent all along was to pick a fight and to push your ideological position.

  34. julie oakley said,

    December 1, 2008 at 1:09 pm

    Emen after having a partial nuchal fold test (I was about 5 days too late as I’d only just discovered I was pregnant at age 44) the doctor who’d done the scan said that the scan indicated that I was probably less likely to have a Downs syndrome child but that he would still urge me to have an amniocentesis because I was still screen positive with something like a one in 200 chance or 0.5% chance of having a Downs syndrome child. My curiosity about my unborn child did not extend to endangering his life to find out.

    I’d be interested to know Kim, whether the doctors would have advised a mother of child without Downs syndrome but with a major heart problem to abort at 20 weeks.

    I have a friend who had a beautiful little boy with Downs syndrome. He had a life threatening medical problem when he was born that is routinely without question treated with surgery in children without Downs syndrome (and which has a near 100% success rate, I believe). She was horrified when the hospital staff suggested that she might want to skip the operation and allow her child to die naturally. Of course she insisted on the surgery. He’s now 15 years old, very happy, very healthy, in mainstream school and a joy to know.

  35. warhelmet said,

    December 1, 2008 at 1:19 pm

    @Kim,

    I think you raise a very interesting point that drives at the very heart of some issues regarding screening.

    Your friend came to the conclusion that an abortion at 20 weeks, however traumatic, was going to be less traumatic than delivering a child that would only live for a few ours. And I would guess as well that she thought of the child’s suffering as well?

    I personally am unsure how I feel about this – it’s something you can’t be sure of until it actually happens to you. I have an intellectual position, but it’s not the same thing.

    My wife and I have fertility issues. She’s had two miscarriages and we’ve been trying for years. We should begin IVF reasonably soon. If and when she does become pregnant, being in the older age group, screening will be an issue for us. Would our selfish desire for a child affect our judgment regarding screening? I don’t know.

    *sigh*

  36. tom1 said,

    December 1, 2008 at 1:22 pm

    Gonzo Girl,

    I think there is a lot to be said for your ‘we-don’t-need-a-cure-position’, particularly as a personal philosophy. Which of us is perfect after all? There are many things, major and minor, for which it isn’t possible to correct our imperfections and make us ‘normal’. Pursuing incremental improvement for it’s own sake is clearly problematic. But I don’t see that it is obviously and universally wrong to seek to improve/correct/cure that which can be improved/corrected/cured.

    [When I say improved/…, I mean in the eyes of the person being improved rather than in any absolute sense. If they don’t think they need a cure, then they don’t need one. If I appear to use these words in a different sense, it is the fault of my typing rather than my intent.]

    Why treat disease and not disability? Why define anyone as ‘sick’? Are we making value judgements about people with chronic illness?

    That said, it seems to me that there is a seperate issue of ‘deselecting’ a foetus with a disability, particularly one like Downs, in favor of a foetus without. I find that far more troubling than seeking to help people who want to be helped.

    Tom

  37. tom1 said,

    December 1, 2008 at 1:35 pm

    If we’re doing show-and-tell, we got odds of around 1/100 for Downs and decided not to do an amnio as we would keep him regardless. I wouldn’t want to pass judgement on anyone who went the other way though.

    If terminating a pregnancy is wrong then, for most people, it’s it’s own punishment. Certainly at 20 weeks.

  38. muscleman said,

    December 1, 2008 at 2:54 pm

    I wonder how many here spotted this piece:
    news.bbc.co.uk/1/hi/health/7749883.stm

    Offering the possibility for at least a remediation of some of the effects of Down’s while in the womb. Particularly what say you Gonzo Girl?

  39. motmot said,

    December 1, 2008 at 11:30 pm

    There’s a really good post by Michael Berube up at Crooked Timber about his debate with Peter Singer (another philosopher) on how having Down’s has affected his son and others, and the wide range of abilities found in people with Down’s: crookedtimber.org/2008/12/01/more-on-peter-singer-and-jamie-berube/

  40. The Nameless said,

    December 2, 2008 at 5:01 am

    “Offering the possibility for at least a remediation of some of the effects of Down’s while in the womb.”

    That, if it worked, would be the real-life version of my “green tea” argument (#24.)

  41. aa said,

    December 2, 2008 at 3:13 pm

    Sorry, GonzoGirl, but Down’s Syndrome is a bad thing to happen to somebody, being blind/deaf/limbless is a bad thing to happen to somebody, and, yes, autism is a bad thing to happen to somebody. It’s not just a more or less neutral characteristic like being blond or short or bald.

    Bad things happen to everybody, in different ways, to different degrees. The question is, how do we deal with the fact that things often go very wrong, both as individuals and as a society. Pitying people who have the problems I mentioned above is obviously ridiculous and patronising. But it’s equally ridiculous, and equally damaging, not to regard those problems as such.

  42. The Nameless said,

    December 2, 2008 at 5:30 pm

    I just came back to comment on something I find quite disturbing– that quote from the Canadian Down Syndrome Society:

    “Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition…

    …Down syndrome is not a disease, disorder, defect or medical condition.

    …Down syndrome itself does not require either treatment or prevention.”

    Now, I’ll grant that “disease” is a loaded sort of word, and maybe shouldn’t be used of a genetic disorder. The rest of it though, suggests that these people– I presume they have children or relatives with Down’s Syndrome– can only cope with the situation by going into complete denial.

    And why is it so shameful to have a “medical condition”, anyway?

  43. Michelle Dawson said,

    December 2, 2008 at 8:48 pm

    I don’t find it disturbing that the CDSS (which includes people with DS in its leadership) provides accurate information about DS. I suggest reading their website. The CDSS has made Canada a much better place for people with DS, and for other disabled people.

    The CDSS has promoted the accurate view that people with DS are not sick, inferior, defective, etc., and do not have to become people without DS in order to achieve equality.

    That the CDSS does not see people with DS as sick, inferior, or disordered does not mean that the CDSS considers that people with DS, unlike all other human beings, do not need education, assistance, services, etc. Nor does it mean that people with DS, unlike all other human beings, never suffer or encounter difficulty, etc.

    I generally disagree with the assumption that the obstacles encountered by disabled people must be rectified by declaring that there is one optimal way to be human, and then requiring everyone to aim for that or be regarded as sick, disordered, inferior, etc. In my view, there’s a lot of history showing that proposing optimal ways of being human is not a good thing.

    I can remember when it was assumed that the optimal life was white, male, and straight. Anyone proposing otherwise would be ridiculed. We’ve gone a ways in getting over that.

    But there is still what Catherine Frazee calls the “colossal failure of imagination” about the lives of disabled people.

    I am autistic. Many people, including judges and political leaders, cannot imagine that my life is worth living. If I accomplish something, it’s assumed that I’ve somehow temporarily (and no doubt heroically) overcome my disability to struggle nearly up to the non-disabled ideal that I must spend my whole life striving for.

    In reality, I’m a researcher and have accomplished things (even if I get hit by a bus tomorrow, my work is out there) mostly only because I’m autistic. And yes, I have exactly the traits and difficulties that are routinely deployed to scare the public about autism. But I could not have done what I’ve done if I weren’t autistic. I’m useful because my range of abilities is highly atypical.

    I’m vividly aware, every day, that anyone is free to call this dysfunctional, diseased and disordered and to remove my freedom and opportunities accordingly–this is certainly within my experience, and will probably happen again–and to require me to spend my life undergoing medical treatment and interventions so that I am doing what I should be, working towards that ideal optimal non-disabled life.

    Or it could be recognized that a wide range of human abilities is not a bad thing, no matter how hard it is, apparently, for many people to imagine that some of us have worth and things to contribute.

  44. ForeverAutumn said,

    December 2, 2008 at 9:27 pm

    @CDavis
    “What happens when the – predominantly older – parents are no longer around to exercise their improved caring and warmth?”

    I expect it depends on the level of ability and the support available. A friend of mine has a DS relative in his 50s who lives in sheltered accomodation with some other mentally handicapped people. He is visited regularly by a social worker but otherwise lives a reasonably independent life and appears happy. His parents died a few years ago but other family members will often check in on him. He had a part-time job until recently when he started having some health issues (possibly related to the DS, possibly not).

  45. tom1 said,

    December 2, 2008 at 11:56 pm

    I suppose for some people their disability is part of their sense of self, for others it is a limitation they could do without. Is an absolutist position really appropriate? It seems to me when it is a case of individual disabled people choosing, or not choosing, to be cured things are pretty simple [Does anyone disagree?].

    Where it’s maybe slightly less simple is when society/parents make the choice to select out disabilities like Michelle’s. At that point all the stuff about making value judgements seems appropriate.

  46. The Nameless said,

    December 3, 2008 at 5:31 am

    “I generally disagree with the assumption that the obstacles encountered by disabled people must be rectified by declaring that there is one optimal way to be human, and then requiring everyone to aim for that or be regarded as sick, disordered, inferior, etc.”

    “I’m vividly aware, every day, that anyone is free to call this dysfunctional, diseased and disordered and to remove my freedom and opportunities accordingly”

    This is getting tiring.

    Do you guys– I mean you and Gonzo Girl, who seem to be birds of a feather– actually bother to read what other people say? Or do you just skim posts looking for trigger-words?

    Please try and understand: saying someone has a “disorder” or “medical condition” does NOT equate with saying that person should be locked up or otherwise oppressed. Yes, that can happen… but the one does not automatically lead to the other. That’s a “slippery-slope” argument.

    And what kind of perfect super-beings do you think the rest of us are? Normal– for want of a better word– people suffer from “medical conditions” all the time– starting with the common cold!

    For most of us terms like “condition” and “disorder” are neutral. Apparently to you they have a special, coded meaning, but all anyone else has done is use everyday words in an everyday way. It is simply not reasonable of you to blame us for that. Besides, your consignment of words to the “taboo” category seems completely arbitrary. Why is “disability” okay, but “medical condition” forbidden?

    Now, I’m sorry if people have treated you badly, but look to your own pre-conceived ideas. I’m getting quite an impression that “normal = bigot” is one of them.

    P.S. Down’s Syndrome *is* a genetic disorder. Deal.

  47. tom1 said,

    December 3, 2008 at 10:22 am

    A question for my better understanding:

    Do Gonzo Girl and Michelle believe there is a difference in terms of this argument between conditions you are born with and ones that are the result of illness or injury? I assume that you would put people born with some kind of ‘neurological impairment’ in the same catagory as Downs in that they don’t need a cure. What about someone with a similar ‘impairment’ due to a road accident? Assuming there was some wonder-stem-cell cure, should it be used on either one?

  48. tom1 said,

    December 3, 2008 at 10:29 am

    By the way, I find Gonzo Girl and Michelle’s position really interesting, but very hard to relate to. I look forward to them clarifying it a little.

  49. Michelle Dawson said,

    December 3, 2008 at 10:30 am

    I remember when women were barred from doing many things, like signing for loans and running marathons, due to being considered inferior and disordered. For this reason, where I live, women were barred, until 1980, from delivering the mail.

    If the word “disorder” (or “disease”) is neutral and universal, than no one would mind femaleness, left-handedness, Jewishness, homosexuality, etc., being regarded and treated as “disorders” (if applicable, “genetic disorders”), or for that matter “medical conditions” or “diseases.”

    Disability is defined in Canadian law in a Supreme Court of Canada decision; you can find the relevant bit within this post autismcrisis.blogspot.com/2007/03/autism-advocacy-at-canadian-human.html

    But mostly I don’t see any way to respond to the notion, promoted by Nameless, that neurodevelopmental disabilities are just like the common cold.

  50. Michelle Dawson said,

    December 3, 2008 at 11:02 am

    In response to tom1, mostly I do science and ethics–two methodologies. I do slow, plodding, non-sophisticated things. I’m not big on speculation re wonder stem cell cures or anything else. But I have not mentioned cures and mostly don’t write about this issue (exept to mention the positions taken by various organizations or individuals).

    The only relevant question re a cure for autism is whether the priority on eradicating autism (cure/prevention), which has dominated autism research, advocacy, public policy, etc., for decades, has benefited autistics. In my view, it hasn’t, and there is evidence (I’m a fantastic anecdote in this respect) that it has harmed us.

    Re acquired (vs innate or developmental) disabilities, I suggest reading a variety of stuff by people who have acquired brain injuries (or other disabilities) of various kinds as adults. It’s well recognized, at least outside of autism, that the wishes and priorities of those who are the subject of research deserve consideration, and this is for good reason.

  51. warhelmet said,

    December 3, 2008 at 12:53 pm

    Although it is a work of fiction, I would suggest that people interested in Autism read “The Speed of Dark” by Elizabeth Moon.

  52. ForeverAutumn said,

    December 3, 2008 at 7:06 pm

    The talk of a “cure” in the case of DS is a bit disingenuous (experiments on mice notwithstanding). There is currently no “cure” for DS; we can’t remove the extra chromosome. We can alleviate some of the difficulties with appropriate education, medical treatment for some issues (such as heart problems), and greater acceptance. All these things improve life expectancy and quality of life for people with DS and their families – but babies born with DS will have the syndrome throughout their lives (albeit with different levels of outcome). Preventing DS births is not the same as a “cure”.

    I agree that the 91% figure tells us v little. People who would not consider abortion in the circumstance would have no reason to get the amnio – I assume the 9% are people who changed their minds. Personally, I would not get an amnio because (a) I wouldn’t take the risk of miscarriage and (b) I don’t see the birth of a DS child as a tragedy. This may be because I have met people with DS, so there may be something to the view that knowing = accepting.

  53. warhelmet said,

    December 3, 2008 at 10:08 pm

    Some people’s concerns with screening for Down’s is that it is “eugenics by abortion”. Eugenics is a dirty word because of associations with the Nazis and even the (historical) compulsory sterilisation of “mental defectives” in what we consider to be liberal countries such as Sweden.

    It is certainly the case that state control of human fertility is a violation of a fundamental human right. But, I’ve heard stories that I do not want to repeat that illuminate the other side of the coin. There are vulnerable individuals who have no voice.

    Tay-Sachs is very unpleasant genetic disorder. But do we regard the actions of, say, Dor Yeshorim as being a form of eugenics? Is there a fundamental difference between genetic conditions that are recessive and have carriers and those that are essentially the result of the result of meiosis screwing up?

    By accepting pre-conception and post-conception screening for certain conditions, the argument runs that you are practising eugenics. The desire to eradicate certain conditions is seen by those with the condition as invalidating their worth and status as a person. Arguments about suffering are largely irrelevant. As far as I am aware, I have no genetic problems but I have experienced a lot of suffering in my life. If a gynaecologist with a 100% reliable crystal ball said to my mother “this one is going experience incredible suffering and will suicide anyway” – should she have aborted me?

    Arguments about longevity are irrelevant. True, certain genetic conditions do result in a reduced life span but we are all subject to the bus that runs over us.

    And I worry about moral relativism as well. Whilst I don’t believe in moral absolutes, I do believe in moral imperatives.

    My next statement is *highly* controversial. Human beings are very group-focussed. A lot of us use group membership as a cornerstone of their identity. Think about when you meet people and introduce yourself. Many people will use their occupation as a opening gambit. I don’t, but I’m just plain wierd.

    The mention of the deaf community is very germane. I’ve worked with deaf people in the past and it can be the case they see themselves as part of the deaf “tribe”. How would you feel if your tribe faced extinction? Especially by state-edict?

    It gets worse. I do respite care for learning disabled children on a voluntary basis. I had to do a lot of training with other people and to be honest, a lot of their attitudes stank. I won’t vent the whole of my spleen but… Pity is not enabling. The object of your pity is disabled by that pity. Oh isn’t sad that X can’t do activity Y? No. Pity is an invalidation of the person. Is it not better to celebrate what they can do? Is it not better to enable them to do more? Pity condemns people to failure.

    I’ve suffered mental illness in the past. I’m OK-ish, but I’ve observed the attitudes of others. Of course, it’s not the same as a permanent disability, but it has provided a window. Watching the judgment that goes on in people’s heads. Being talked about in the third person as if I wasn’t there. Yet another round of mental health professionals asking me the same old questions.

    I do understand where Gonzo Girl and Michelle are coming from. Especially Michelle (I work with the autistic). Whether or not I agree is another matter.

    Ethics. Bio-Ethics. Medical ethics. Medico-legal stuff. This doesn’t fall into the realm of “Bad Science”.

    Ben’s article questioned whether attitudes towards Down’s Syndrome had actually changed given the evidence. I don’t know and I suspect that abortion figures are the wrong place to look. Can you judge societal attitudes from a self-selecting sample of the population? Erm – “self-selecting sample” is an overly strong term but I’m sure that you can see what I’m driving at.

    I still don’t know exactly what I feel about this.

  54. tom1 said,

    December 3, 2008 at 11:02 pm

    The last couple of posts make more sense to me.

    I do think though that the price for rejecting neonatal testing/abortions is payed by parents. The Dr Crippen link in Ben’s Mini Blog makes interesting reading:
    nhsblogdoc.blogspot.com/2008/12/crippen-diaries-2008-december-1.html

    Unless more is done to help carers, the price is just too high to for me to judge anybody who doesn’t want to pay it.

  55. The Nameless said,

    December 4, 2008 at 3:19 am

    “Sure, there’s no rational reason why screening foetuses for Down’s should inevitably lead to prejudice against adults with Down’s; it’s not necessary, it’s not inevitable. But it doesn’t take much study of human nature to conclude that that is exactly what will happen.”

    Ummm…. except that such testing has been in place in Britain, and elsewhere, for many years now, and has NOT, it seems, lead to this.

    I agree that testing is a difficult issue, and that some conditions simply have no feasible cure at present. However, La Dawson and Gonzo Girl have moved far beyond that to the point of insisting that Down’s Syndrome is not a disorder *at all*… and that anyone who disputes this is seeking a way to oppress them, personally, and deny their worth.

    And THAT– not the possible results of screening– was the logical fallacy I was pointing out from the heights of my ivory tower.

    In other words, they’re trying to force their completely unfounded– but obviously cherished– beliefs on us via emotional blackmail.

    Now, though I drew attention to it as a logical fallacy, I could just as well call it an insult. I was, in fact, insulted. (Yes, Michelle, us neurotypicals have feelings too… even if we can’t hope to approach the level of moral and ideological purity of the neurodiverse.)

    I’d *never* accept that level of argument from an able-bodied/minded person. Isn’t it rather patronising to do so when it comes from an autistic?

  56. Michelle Dawson said,

    December 4, 2008 at 4:01 am

    I don’t see any blackmail, etc., in accuracy. Again I suggest reading the information provided by the CDSS.

    I have not seen any arguments here for DS being a disease, disorder, defect and/or medical condition that are better (more accurate) than the information provided by the CDSS. I also recommend the work of the physician, Brian Skotko, and in the more general area of developmental disabilities, the work of People First.

    I don’t use the word “neurotypical” or the word “neurodiverse” or the word “oppress” (unless, like here, I’m quoting someone else). Nor have I written anything about anyone’s feelings or lack thereof.

    I am concerned about public policy, the law, the jurisprudence, etc. (as well as standards of science and ethics), and their unvoidable consequences, mostly in the area of autism. I did spend a lot of time looking at non-autism disability organizations (for many reasons) and this was how I encountered the CDSS, People First, and others.

    After reading the information provided by CDSS, and speaking with CDSS officials (instead of simply assuming they are all ignorant of DS and deluded), I’ve quoted the CDSS many times, for various reasons (anyone interested can look this up).

    The “level of argument” Nameless invokes has nothing to do with anything I’ve actually written (see above, or for that matter, anything I’ve written about anything).

  57. The Nameless said,

    December 4, 2008 at 4:26 am

    *Musings of a Nameless Neurotypical*

    So how do I *feel* about this?

    Well, I may as well admit now that I *do* pity (but not despise) disabled people, I *am* very glad I’m not one, and I *do* tend to assume that, other things being equal, I’ve had a better life. I also should greatly prefer that any children I may have down the track be normal. I’m sorry if that’s a hurtful thing, but it’s not something I can help… and so far no-one has given me a single reason to see things differently.

    I *don’t* think the fact that I’ve been dealt a better hand by fate/genetics/whatever makes me a better person. I don’t think it makes me a worse person either… and there’s the rub. I have, as I said, a fairly strong impression that this is *exactly* what Ms Dawson and Gonzo Girl think. Prejudice cuts both ways.

    Understand– in no way am I disputing that people like Michelle, Gonzo Girl and the new arrival, Coobeastie, do indeed meet with prejudice and have had bad experiences… the fact that their sense of self-worth is seemingly so incredibly fragile proves this, as far as I’m concerned.

    Unfortunately, it makes it very hard to debate with them as I would with anyone else. For one thing, I’m afraid that if I win even the minor point that no, Down’s Syndrome is *not* just a normal variant, these guys will all slash their wrists. For another, it’s always hard to argue with someone who gets a free pass on using logical fallacies from everyone else.

  58. The Nameless said,

    December 4, 2008 at 9:37 am

    Oh, and before anyone picks me up for spelling “led” wrong, that was a typo.

  59. The Nameless said,

    December 4, 2008 at 9:44 am

    One more thing… doesn’t this goal of radically changing society to accommodate the disabled– such that they will, in effect, no longer *be* disabled– require an *awful lot* of faith in the good will and selflessness of the rest of us? (More than I have, to be honest.)

  60. kim said,

    December 4, 2008 at 1:12 pm

    @Coobeastie: “I understand that raising a disabled child is more stressful and expensive; that there are bloody good reasons that women have for going for the terminations. But the overall debate is rarely carried out in terms of individual circumstances; rather about how awful it must be to have Down Syndrome.”

    I’m not sure that’s true. I think that most parents who choose to abort Down’s Syndrome babies simply don’t want the combination of hard work and less reward that they think they’ll get with a Down’s child.

    @Squander Two: “Sure, there’s no rational reason why screening foetuses for Down’s should inevitably lead to prejudice against adults with Down’s; it’s not necessary, it’s not inevitable. But it doesn’t take much study of human nature to conclude that that is exactly what will happen.”

    Again, not at all sure about this. When I was a child, Down’s Syndrome was much more common than it was now, but I think prejudice was greater.

    @julieoakley and @warhelmet – you both make interesting points about my friend’s story. I don’t have any good answers to any of this – it’s very difficult. The one thing I do think is that modern medicine has enabled us to make choices that we once didn’t have, and in some ways our lives were easier when we didn’t have them. Whatever choice you make, there’s always a chance you’ll feel regret for making the wrong choice.

  61. brainduck said,

    December 4, 2008 at 1:24 pm

    Very much agree with Coobeastie.

    I find this pretty ironic in the light of what Ben’s previously written about me: www.badscience.net/2008/05/blogs-vs-mainstream-media/
    It is not a Bad Thing that I was born. The birth of more people like me should not be something that society tries to prevent.

    Many of my family on both sides have SpLDs (Aspergers, dyspraxia, dyslexia…). There’s an obvious genetic pattern to it – all your ancestors coming from the same Welsh valley makes these things obvious. I never want to be in a position where I’m told I’m irresponsible for having children like me / my brother.

    Genetic *testing* is NOT treatment. Killing people isn’t the same thing as treating them, and I don’t understand how the two can so often be confused. Genetic screening is looking at two embryos, and deciding that the one more like me deserves less of a chance at life than the one less like me. Why the hell should people NOT be made to feel guilty about that? Systematically wiping out everyone who thinks like me is wrong, and I should be free to say it’s wrong. It’s ‘scumbaggy’ to try to prevent people like me existing, not for me to say that actually my life is pretty good and I’m glad I was born, thanks very much, and if you have a problem with that then sure you should feel guilty.

    If you choose to have a baby at all, you don’t get a guarantee that they will be ‘perfect’. They could have the greatest genotype ever, and be affected by birth hypoxia or a car crash or whatever and need 24-hour care for the rest of their lives because of that, and you’d just have to deal with it. If you can’t, don’t have children at all. Deciding that loving your child is conditional on it having the right chromosomes is wrong.

    My brother is affected to the point that he’s not managed several attempts to live independently, get a degree or job. I’ll probably have to look after him when our parents aren’t able. So what? This isn’t a ‘tragedy’, it’s just life.

    I’m quite probably going to end up working professionally in the field of adult learning disability too. I agree that many adults with learning disabilities face a difficult life. I’ve looked after children & adults with PMLDs, LFA, severe challenging behaviour, all sorts. Yes, these conditions do cause them problems, and there’s a fair chance I’ll end up working on research into treatment or cure for them. That doesn’t mean that it’s better that those people should never have existed, or that they can’t have a decent quality of life without a cure.

    We should be doing more to improve the life chances of disabled people- and fuckwitted attitudes like Dr Crippen’s certainly don’t.

    If Dr Crippen thinks disability sport is ‘boring, at worst cringe-making and in both cases makes most of us feel profoundly uncomfortable’, he can not watch it – his loss. Personally I’m looking forward to watching the visually impaired friend I coached from novice on running and cycling compete on the British Triathlon team. His loss if he thinks I shouldn’t be allowed to compete in ultra-marathon running – too embarrassed that I can outrun 99% of the population, even if I’m not going to get any points for style doing so?

    FWIW, I’m more-or-less pro-choice for people to decide whether they want to have any child. Deciding that you only want a particular sort of child, that the child that you did want is suddenly ‘not good enough’ is completely different.

  62. The Nameless said,

    December 4, 2008 at 3:06 pm

    Huh?

    Who has mentioned “systematically wiping out everyone who thinks like you”?

    How did *dyspraxia* get into this? Is there even a known gene for it? Who said parents should about foetuses with *any* condition, and that only “perfect” children should be born? Not I. Not anyone, on this site or Dr Crippen’s, that I can see.

    Yes, there is a question of “where do you draw the line? ” There will probably be an increasing number of tests in future, for increasingly minor conditions– where do we stop? (After all, no-one is “normal” on every possible criteria.) It’s both an interesting point, and certainly something that needs to be discussed… rather than screamed about.

    Besides, they’ve been screening for Down’s Syndrome for years and years and years. You sound like you only just found out.

  63. tom1 said,

    December 4, 2008 at 3:49 pm

    brainduck,

    a couple of points.

    1. I can’t speak for the intentions of rest of society, but I don’t see that giving people the options to avoid having a child with a disability is the same as telling people they are irresponsible to have disabled children, or systematically trying to wipe out the disabled. Are you reading that into what I and The Nameless have been saying? My view is that the situation is hard enough for parents without being pressurized one way, or the other.

    2. It’s not your fault, but there seems to be a problem of definition and moving goal posts here. The original posts moved from Downs include deafness and how wicked it was to promote hearing aids. Their view seemed to be that there was nothing to cure. Is your view then that there is something to cure?

    3. I agree that screening is different to curing. I’d be surprised if anybody here is going to argue against you on that. Any takers? There are some cases where I’d be tempted to say, “better never to have been born”, but they’s have to be pretty bad. If the individual disabled individual is happy to be here, then they are most welcome.

    4. I agree with you on some of your criticism of Dr Crippen. I think though that he does acknowledge that he isn’t being very sinsitive. Do you disagree with his main point. That society does very little to help parents of the disabled? Remember, what Dr Crippen said he found offensive about the paralympics was how little society does to help the day to day needs of disabled people and their families, but then slaps itself on the collective back for being so liberal about allowing disabled athletes to compete.

    Some carers do end up killing themselves because they can’t cope. It isn’t necessarily an easy thing that you are asking of people.

  64. brainduck said,

    December 4, 2008 at 4:05 pm

    Dyspraxia comes in ‘cos I’ve got it, it often co-occurs with ASDs (in my family & in general), and it’s already legal & happening in the UK to use IVF discard embryos which just have a higher chance of maybe having ASD on account of being male & having a family history of ASD.
    www.timesonline.co.uk/tol/news/uk/article676000.ece

    So when they do make a workable screening test for ASDs, more people will use it, because some people are already using a much more invasive option. The effect of this will be fewer people who think like me (would you like a full explanation of the broader phenotype of ASD? I’ve prob got most of the genes anyway), and most of the men in my extended family never having been born.

    Genetic screening effectively says it would be better if people like my brother were never born. Today they could already be ‘screened out’ / selectively destroyed, this is not a matter of being alarmist, scaremongering, or going beyond the data.

    This isn’t being discussed, it’s just being allowed to happen under a banner of ‘individual choice’ without any thought for the wider social impacts, and often as not without much if any input from the people most directly affected by it. Yep, selective abortion / embryo destruction is an uncomfortable topic, and people don’t like you discussing it. Ben has managed to call the mother of someone with Down syndrome ‘scumbaggy’ for saying that her child is as worthy of life as anyone else. If you say that selectively wiping out people with disabilities is wrong, you’ll be told you are being ‘judgemental’ and shouldn’t make people feel ‘guilty’. But this effectively shuts down a wider discussion of the issues. I’m not about to start waving placards outside clinics. That’s not what the DSA were doing. Why shouldn’t they be allowed to say that actually, life with Down syndrome can be good?

    I know they’ve been screening for Down syndrome since the 1980s, doesn’t make it any less wrong.

  65. tom1 said,

    December 4, 2008 at 4:05 pm

    ForeverAutumn,

    Is anybody arguing that most disabled people can’t be just as happy as anybody else. If I’ve said that, I take it back. I have never seen any statistics on the issue, but I’m quite prepared to believe you.

    Happy or not, some disabled people, given the option, would want a cure. Some people posting here feel that they shouldn’t have it (or have I misunderstood).

    I don’t think most of us are even arguing about the majority of disabled people. There are some conditions though that mean a lifelong comittment from parents of a totally different order of magnitude than a normal child. That’s certainly what I’m talking about.

  66. brainduck said,

    December 4, 2008 at 4:29 pm

    Sorry, X-posted.

    ForeverAutumn – not read that book, but am familiar with similar research. Agree.

    Tom1 – Crippen talked about disability sport as ‘boring, at worst cringe-making and in both cases makes most of us feel profoundly uncomfortable’. IMO that says a lot more about him than it does about the quality of life of athletes with disabilities.

    I agree that there should be more support available – given I’ve family members with a disability, my last job was supporting a profoundly disabled teenager to live at home, and it’s probably where I’m headed career-wise, I’d be unlikely to disagree.

    Where I think Crippen is being a prat is in suggesting that *all* we should be doing is supporting people on benefits, and not much else. Yes, people with Down Syndrome can get jobs – more likely supermarket shelf-stacking than airline pilot, but that’s not nothing. Yes, they can often live with some degree of independence, even if not to the point of doing their own accounts then they often can manage a lot with some support (www.larche.org.uk/ being a good example). Yes, disability sport can be exciting, I’ll be jumping up and down & yelling at my visually impaired friend’s European triathlon debut every bit as much as I would for anyone else.

    If Crippen just thinks that the Paralympics is wasteful, then that’s a position I have some sympathy with (along with the Olympics), but then let’s be consistent & tear down the museums and art galleries and everything not strictly utilitarian & bring in the Glorious Communist Revolution, Comrade!

    Some carers end up killing their relatives with disabilities, and not always because they ‘can’t cope’ with the demands of caring, but because they can’t cope with the stigma of disability.
    www.telegraph.co.uk/news/3068392/Ashamed-mother-jailed-for-life-after-drowning-cerebral-palsy-daughter.html
    leftbrainrightbrain.co.uk/?p=380
    Every time a comment like Crippen’s is made, it brings us closer to the next murder.

  67. The Nameless said,

    December 4, 2008 at 5:27 pm

    “Dyspraxia comes in ‘cos I’ve got it, it often co-occurs with ASDs (in my family & in general), and it’s already legal & happening in the UK to use IVF discard embryos which just have a higher chance of maybe having ASD on account of being male & having a family history of ASD.”

    Ah, so they’re *not* targeting dyspraxia, it’s “ASD” (er…wild guess… autism spectrum disorders? ).

    “If you say that selectively wiping out people with disabilities is wrong, you’ll be told you are being ‘judgemental’ and shouldn’t make people feel ‘guilty’. But this effectively shuts down a wider discussion of the issues.”

    And what you’re doing doesn’t? I said the issue needs to be tackled.

    And no-one – NO ONE, brainduck– is advocating “selectively wiping out people with disabilities”. Unless you think foetuses are people– in which case you should be against abortion per se.

  68. tom1 said,

    December 4, 2008 at 5:39 pm

    gimpyblog,

    I can understand a position that abortion per se is wrong. My understanding of many of the posts so far is that abortion is OK, but not on the grounds of disability.

  69. gimpyblog said,

    December 4, 2008 at 5:52 pm

    tom1, and that attitude is what I am criticising. Parents can abort on whatever grounds they feel like up to 24 weeks if a doctor agrees that not to do so would affect a woman’s physical or mental health. To argue otherwise is to argue that the state has the right to control what a woman does with her body. I mean for fuck’s sake, that is an incredibly regressive argument. After the 24 week window the state considers the foetus to have sufficient rights as to allow abortion only in certain circumstances. Disabilities resulting in serious handicaps being one of those circumstances. Don’t like it, argue for change but you’ll climb into bed with some deeply unsavoury organisations wedded to deeply unpleasant attitudes if you are not careful.

  70. MedsVsTherapy said,

    December 4, 2008 at 6:15 pm

    For a rhetorical point, let me pose a question: why not kill the children after they are born?

    Why is the mode of addressing down’s to be to kill them before they are born? Why not kill them in their teens or 20s? When a parent becomes very elderly,, and ends up unable to independently carry out life tasks such as bathing and feeding, much less earn an income, and when it poses a great imposition upon the life of their adult child, why don’t we kill the incapacited elderly?

    They also place a burden upon the rest of us. Why pick on the not-yet-born?

    NB: feel free to substitute your preferred euphemism for “kill.”

  71. brainduck said,

    December 4, 2008 at 6:16 pm

    I agree that in any individual case, it should be up to the woman involved (+/- anyone she chooses) to make the decision on abortion. I’m more-or-less pro-choice on abortion anyway.

    But people don’t make decisions in a vacuum. If everything you hear about Down syndrome in the media is all negative, of course this is going to affect the decision you make. If the Paralympics have to stay off the TV for fear of offending the likes of Crippen, and instead you only get the ‘horror stories’, or course it’s going to affect how people understand disability and the decisions they make around abortion.

    Try bringing this up though, and people get angry. What exactly is ‘scumbaggy’ about what the Down’s Syndrome Association said in their press release?
    www.downs-syndrome.org.uk/news-and-media/press-releases/2008/487-births-increase.html

    The DSA are *correct* in saying the numbers are increasing, though perhaps for the pedantic they could have specified that this was an absolute increase in live births, and not relative to all conceptions. It is true to say that more children with Down syndrome are being born. The numbers on the DSA press release are not being disputed, just their implications.

    The DSA also appear to have at least some evidence for their assertions about what might have caused this absolute increase in number of births. I’ve not seen the ‘1000 member survey’ so I can’t discuss its quality, but:
    ‘Initial results show that 25 per cent said they already knew people with Down’s syndrome or other disabilities and that had influenced their decision to continue with the pregnancy. Thirty-five per cent said they felt life and society had improved for people with Down’s syndrome.’

    Sounds to me like the DSA had got their facts straight, and the press release looks like fair comment on actual survey data.
    Sure there’s a debate to be had over the interpretation, but it’s not point-and-laugh wrong, and they certainly don’t deserve being called ‘scumbaggy’.

  72. MedsVsTherapy said,

    December 4, 2008 at 6:16 pm

    3…2…1..duck!

  73. tom1 said,

    December 4, 2008 at 6:24 pm

    Quack!

  74. brainduck said,

    December 4, 2008 at 6:29 pm

    Gimpy, I don’t think there is a ‘list’ of disabilities – this was brought up & rejected at recent Commons debate on abortion law. This means that after 24 weeks, a ‘normal’ foetus is given moral status, but a ‘disabled’ foetus can be deemed to be ‘not a person’. I have a problem with this. A 25-week-old foetus with Down syndrome is as alive as one without, but in law only the foetus with Down syndrome can be aborted.

    In 2007 there were 135 abortions after 24 weeks, only legal on grounds of disability. 31 were for chromosomal abnormalities, 59 were for abnormalities of the nervous system, 34 for abnormalities of other organ systems, and 11 for other conditions.

  75. Michelle Dawson said,

    December 4, 2008 at 6:33 pm

    The Down syndrome organizations I know about, including the CDSS, take the position that parents choosing prenatal testing for DS should have as accurate information about DS as possible. I support this position (concerns about the information being given to parents have been raised in the literature; see Brian Skotko’s work).

    The major DS organizations I know about, including the CDSS, do not in any way take the position that a decision (whether to undergo prenatal testing, whether to go ahead with a pregnancy) must be imposed on parents.

    In response to Tom 1 re a “cure,” as I wrote above, at least in autism, the only question worth asking is whether the long-standing (decades) priority in autism research, public policy, advocacy, etc., on eradicating autism (in various ways, including through cures) has benefited autistics. This does not seem to be the case, and the predominance of this one approach to autism may have harmed autistics.

  76. gimpyblog said,

    December 4, 2008 at 6:33 pm

    Here is the relevant section of the 1967 Abortion Act.

    (1) Subject to the provisions of this section, a person shall not be guilty of an offence under the law relating to abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners are of the opinion, formed in good faith—
    (a)
    that the pregnancy has not exceeded its twenty-fourth week and that the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman or any existing children of her family; or
    (b)
    that the termination is necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman; or
    (c)
    that the continuance of the pregnancy would involve risk to the life of the pregnant woman, greater than if the pregnancy were terminated; or
    (d)
    that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.]
    (2) In determining whether the continuance of a pregnancy would involve such risk of injury to health as is mentioned in paragraph (a) [F2 or (b)] of subsection (1) of this section, account may be taken of the pregnant woman’s actual or reasonably foreseeable environment.

    A woman who chooses to abort on the basis of disability is allowed to do so by law. Those who oppose testing seem to think this law is wrong or that it is acceptable to inflict immense guilt on other law abiding people in a difficult situation to achieve the outcome that they think is morally acceptable. Objecting to the law is fair enough, imposing morality by inflicting guilt is utterly vile no matter how good you think your argument is. If it is that good it can be dispassionate and rationally argued.

  77. gimpyblog said,

    December 4, 2008 at 6:35 pm

    brainduck

    Gimpy, I don’t think there is a ‘list’ of disabilities

    Yeah, you’re right, the justification is ‘seriously handicapped’ (see above).

  78. tom1 said,

    December 4, 2008 at 6:52 pm

    Brainduck,

    >31 were for chromosomal abnormalities
    Are we talking Downs, or more serious? For all I know these are really catastrophic defects we are talking about. Does anybody have more detailed information, I am too swamped to investigate right now.

  79. brainduck said,

    December 4, 2008 at 6:59 pm

    The stats I found didn’t say – though these are pregnancies > 6 months, would guess that a lot of the ‘worst’ defects would have spontaneously miscarried earlier than that.

  80. The Nameless said,

    December 4, 2008 at 7:04 pm

    @brainduck: “But people don’t make decisions in a vacuum. If everything you hear about Down syndrome in the media is all negative, of course this is going to affect the decision you make”

    And if what everything is positive? As in, unrealistically positive? As in, ignoring troubling facts like:

    “People with Down’s syndrome have varying degrees of learning disability, but most often the disability is severe. Some people will lead semi-independent lives while others will be completely dependent. About 40% of babies with Down’s syndrome are born with a serious heart defect.” –from the Wolfson Institute of Preventative Medicine (where the Cytogenic Register is.)

    “It is true to say that more children with Down syndrome are being born. The numbers on the DSA press release are not being disputed, just their implications.”

    So? The implications are everything.

    “The DSA also appear to have at least some evidence for their assertions about what might have caused this absolute increase in number of births.”

    No… they just know why parents choose not to abort. If it’s true that the same *percentage* choose abortion as ever, then this is meaningless.

  81. tom1 said,

    December 4, 2008 at 7:15 pm

    Ok, back up…. I got off my ass and looked at the stats. Since we are just talking about AFTER 24 weeks. In 2007 there were zero for Downs. Of those specified we have:

    19 ‘other’ malformation fo the brain.
    19 ‘other’ malformations of the nervous system.
    13 malformations of the skeletal system
    10 edwards’ syndrome
    www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_085508?IdcService=GET_FILE&dID=167285&Rendition=Web

    As I recall Edwards’ is quite a bit more severe than Downs.

    I’d be interested in what the skeletal problems were, but it seems to me people aren’t aborting anybody after 24 weeks for anything minor.

  82. brainduck said,

    December 4, 2008 at 7:21 pm

    Gimpy, prob is that if you start arguing that abortion on grounds of disability being legal might be less-than-wonderful, people will start jumping down your neck about ‘guilt’ and ‘right to choose’ and etc, regardless of what your actual argument is.

    I’m not sure how you could go about arguing that termination / selection for X is wrong, without making people who have terminated / selected for X feel guilty.

  83. The Nameless said,

    December 4, 2008 at 7:26 pm

    @Michelle Dawson.”The Down syndrome organizations I know about, including the CDSS, take the position that parents choosing prenatal testing for DS should have as accurate information about DS as possible.”

    You mean that it isn’t really a disorder or medical condition at all? Oh, yes. Highly accurate.

    @MedsVsTherapy. “For a rhetorical point, let me pose a question: why not kill the children after they are born?

    (…etc, etc, etc…)

    Why pick on the not-yet-born?”

    *Because* they’re not-yet-born. Once they’re born they’re *people* and it’s *murder*.

    Let *me* pose a question, MedsVsTherapy: Why ask questions to which you *certainly* already know the answer? It can’t be just so you can imply people who don’t agree with you are just itching to commit mass-murder… oh wait. It is.

    @gimpyblog. “Objecting to the law is fair enough, imposing morality by inflicting guilt is utterly vile no matter how good you think your argument is. If it is that good it can be dispassionate and rationally argued.”

    Excellent point. How about it, people?

  84. gimpyblog said,

    December 4, 2008 at 7:30 pm

    I’m not sure how you could go about arguing that termination / selection for X is wrong, without making people who have terminated / selected for X feel guilty.

    I think you have to be subtle. You would have to show that individuals with X are capable of living fulfilling lives. But you could not use this fact to argue for restrictions on choice, only that those making the choice should consider this point of view. You cannot restrict terminations before 24 weeks. You simply just cannot if you accept that women have the automatic right to have an abortion. Now if you want to argue that women don’t have the automatic right to an abortion then go ahead. I respect that position, even though I think it is profoundly wrong. Just don’t base your arguments on feelings of guilt.

  85. tom1 said,

    December 4, 2008 at 7:33 pm

    Michelle,

    oh dear, I’m going to show my ignorance here. What cures are there for autism?

  86. The Nameless said,

    December 4, 2008 at 7:43 pm

    @Michelle,
    oh dear, I’m going to show my ignorance here. What cures are there for autism?

    None that work as far as I know, but some that are dangerous… didn’t you hear about the boy who died from “mercury chelation therapy”? As I said, some things just *can’t* be cured.

  87. The Nameless said,

    December 4, 2008 at 7:44 pm

    Correction: that post I quoted was from tom1, not Michelle Dawson.

  88. The Nameless said,

    December 4, 2008 at 7:54 pm

    @brainduck: Nameless – can you produce research on quality of life, rather than medical disability, please? Dunno about Down, but for other developmental / congenital disorders the two are not necessarily related.

    No, I can’t. But that’s not the point. The point is that, arguably, the media has presented an overly sanitised view, rather than the completely negative one you mention.

    “Why is it ‘meaningless’ that more parents are choosing to continue with pregnancy, and why? It depends on what you are interested in, surely – might not say much about what any individual parent might do, but if for instance you are planning services it’s very useful to know absolute numbers.”

    Yes. But that’s not the point either. The point is whether the absolute increase means that a greater *percentage* of parents are choosing to keep such children, or simply that there are more such children conceived.

    See?

  89. brainduck said,

    December 4, 2008 at 8:01 pm

    Nameless – but the DSA press release did not say that there was a percentage increase in people continuing with a DSA pregnancy. It only discussed the actual numbers, not percentages. I am puzzled why you think that only the percentages are meaningful, not absolute figures?

    Also, if you want to argue about how the media presents DS, data please. rather than a few linked stories on the same press release in the same week. The links I posted certainly suggest that parents are not presented a ‘sanitised’ view at point of making a decision.

  90. The Nameless said,

    December 4, 2008 at 8:31 pm

    @brainduck.”Nameless – but the DSA press release did not say that there was a percentage increase in people continuing with a DSA pregnancy. It only discussed the actual numbers, not percentages. I am puzzled why you think that only the percentages are meaningful, not absolute figures?

    Why are you puzzled? Read the main article again. It’s perfectly simple. Seriously, I don’t know how to explain the point any more clearly.

    Also, if you want to argue about how the media presents DS, data please. rather than a few linked stories on the same press release in the same week. The links I posted certainly suggest that parents are not presented a ’sanitised’ view at point of making a decision.

    No, I don’t have ‘data’.
    I’m referring to a.) the current media coverage b.) the “spin” given by certain charities.

    Yes, I shouldn’t have made a generalisation without more concrete evidence… trouble is, it’s tiring having to put up with all these emotional arguments, accusations of bigotry and even murderous intent. One makes slips.

  91. Squander Two said,

    December 4, 2008 at 8:58 pm

    gimpyblog:

    > Objecting to the law is fair enough, imposing morality by inflicting guilt is utterly vile no matter how good you think your argument is.

    How utterly absurd. Some actions are wrong, and society collectively imposes guilt on those who carry out those actions as a disincentive. And quite right, too. The implication of what you’re saying is that the only acceptable way to stop people doing something is to make it illegal. But it doesn’t take much thought to come up with plenty of examples of things that people shouldn’t do but that shouldn’t be banned or things that people should feel guilty about regardless of their legality. Adultery, for a start.

    Feelings of guilt are your conscience speaking, and your conscience doesn’t exist in a vacuum: it’s the collection of your knowledge of the morality of the wider society of which you are a part. Other people telling you what’s right and what’s wrong is what gives you a conscience in the first place. Where did you think it came from? Law books?

    We have tabboos for a reason.

    brainduck:

    > This isn’t a ‘tragedy’, it’s just life.

    God, yes, absolutely. One of the great truths of humanity which so many people seem to be so desperate to stamp out.

    When my wife nearly died and was pretty much helpless for months after childbirth, people kept asking me how I coped or saying they were amazed that I could cope. Always that word: “cope”. I never got the question. For any situation that ever presents itself to you, there are three choices: cope with it, run away, or kill yourself. If the situation involves the welfare of other people, what that boils down to is (a) cope or (b) be scum. Why on Earth wouldn’t I cope?

    Far too many people seem to think life should be only a series of choices about what you want to do and never any events that just bloody happen to you whether you like it or not and never any obligation to be responsible for other people even if you didn’t choose to be. Like brainduck says, your child could be born perfectly healthy and then need round-the-clock care from when they’re two, or five, or ten, or twenty, for any number of reasons. If my daughter ends up quadraplegic, my wife & I are going to look after her, which is a hell of a lot more important than whatever other plans we might have had. If we weren’t willing to commit to that, we wouldn’t be fit to be parents. Anyone else who’s not willing to commit to that isn’t fit to be a parent. This is what parenthood is.

    So, back to the question of why disabled people are quite right to feel threatened by this sort of thing. Let’s say you’re fifteen years old. You know, because they’ve told you, that your parents screened for Down’s Syndrome and had an abortion on their first attempt; you’re the result of their second. And then you’re in a car crash and lose the use of three of your limbs and are going to need serious looking-after for the rest of your life. Trust your parents?

  92. The Nameless said,

    December 4, 2008 at 9:01 pm

    brainduck… about the percentage vs absolute numbers issue: it’s like why more murders in one year than another may not mean a higher murder rate, if the population has also grown. Now do you understand?

    About the media presentation issue– wait, your initial comment– the one I responded to– was this:

    “But people don’t make decisions in a vacuum. If everything you hear about Down syndrome in the media is all negative, of course this is going to affect the decision you make”

    So you were talking specifically about the media
    presentation too. And you were making an assertion… all *I* did was mention that the media coverage we’ve seen fails to mention certain unpalatable facts.

    So, if anything, brainduck, the burden of proof is on you to show that, in your own words, “everything you hear about Down Syndrome in the media is all negative”.

    Nope, I don’t have to provide the data. You do.

    Unless you want to drop it, of course. It’s only a side-issue.

  93. The Nameless said,

    December 4, 2008 at 9:27 pm

    @Squander Two.

    –You’ve got me bang to rights. As someone who will probably screen for DS if I have children late in life, I am of course extremely evil and virtually certain to bump my future children off should any of them ever be crippled in an accident.

    Me, and the evil, EVIL, EVVIILLL 92% of parents who choose abortion in the case of a Down’s Syndrome diagnosis. As everyone knows, there’s absolutely no difference between an embryo and a 15-year-old girl. If you don’t love one on a personal level, you can’t love the other.

    Seriously, is this all you lot can deliver?* This *endless* repetition of “murderers…bigots…murderers…bigots…”

    Is that it?

    I’m getting to the stage where I don’t think there’s any point arguing with you people. I have kept my cool, been polite, tired to steer the argument in the direction of actual reason. But why bother? You guys don’t listen. You just KNOW you’re right… and that people who don’t agree with you are BAAAD people.

    Yes, The Nameless is finally starting to lose it. There’s only so much offensive stupidity I can take.

    *I’m excluding brainduck from this for the moment, as he or she does now seem to be trying to actual logic and evidence, rather than insults and appeals to emotion.

  94. tom1 said,

    December 4, 2008 at 9:41 pm

    Can I just clarify something for a moment. Is there anybody here who who is arguing there is no difference between a aborting a disabled foetus and a disabled killing a 15 year old?

    As for Squander Two. Well done for coping, not everyone does. As mentioned before, some parents end up killing themselves because they can’t cope.

  95. The Nameless said,

    December 4, 2008 at 9:58 pm

    Seriously, I think I might depart this thread, at least for the moment. I’m just very tired of people like Squander Two, with their refusal to listen, illogicality and reliance on cheap–shots.

    It’s *worse* than arguing with a Creationist!

  96. The Nameless said,

    December 4, 2008 at 10:03 pm

    @tom1. Can I just clarify something for a moment. Is there anybody here who who is arguing there is no difference between a aborting a disabled foetus and a disabled killing a 15 year old?

    My comment refers to this (from Squander Two):

    “Let’s say you’re fifteen years old. You know, because they’ve told you, that your parents screened for Down’s Syndrome and had an abortion on their first attempt; you’re the result of their second. And then you’re in a car crash and lose the use of three of your limbs and are going to need serious looking-after for the rest of your life. Trust your parents?”

    Sorry, but that’s just the last straw.

  97. tom1 said,

    December 4, 2008 at 10:19 pm

    The Nameless, I agree with you. I’m not sure if it’s silly, offensive, or both. I’m building a staw man that looks kind of like Squander Two, would you like to accuse it of something?

  98. The Nameless said,

    December 4, 2008 at 10:44 pm

    @tom1. Sure… got anything in mind? Sorry, but my resources are running dry.

  99. The Nameless said,

    December 4, 2008 at 10:57 pm

    @warhelmet. Sorry for ignoring your post. These are interesting points you raise, and I’d like to discuss them further… but not right now. I’m feeling rather tired and fed up at the moment.

  100. Squander Two said,

    December 4, 2008 at 11:11 pm

    O Nameless One,

    You have completely missed my point, misread most of what I’ve written, and misrepresented it too.

    First, here are some words I didn’t use:
    evil
    bigot
    murder
    bad

    And there’s a reason I didn’t use them, which is that I didn’t mean them.

    In fact, it’s amusing that you complain of the “*endless* repetition of “murderers…bigots…murderers…bigots…” I invite any interested readers to use the handy Find function in their browser to search this here webpage for the words “murder” and “bigot”.

    I think tom1 understood, as evinced by:

    > Can I just clarify something for a moment. Is there anybody here who who is arguing there is no difference between a aborting a disabled foetus and a disabled killing a 15 year old?

    No, there isn’t. I’m certainly not.

    Read my first post. What my point is is that logic only gets you so far. The broader views of broader society aren’t based on logic. They’re not based on the careful rational consideration of one single issue in isolation. They’re based on a jumble of logic, urban myth, superstition, religion, stuff people hear down the pub, gut instinct, genuine instinct, taboos, lust, inspiration, fear, the desire to conform, the desire to rebel, and God only knows what else, all applied to every single issue at once. If you want to discuss what policies lead to what attitudes, discussing the rational logical progression of just the one argument will enable you to predict precisely nothing about what people will actually do. And a lot of people here, you included, are erroneously conflating “When I consider this issue rationally and dispassionately, I do not reach that conclusion” with “Of course this policy won’t have that effect across large populations over long periods of time”. That’s a hell of a leap.

    Take trust. The reason I ended that paragraph with “Trust your parents?” is that trust is a perfectly good example of something that isn’t based purely on logic. I’m not talking about what the parents will decide to do. As a parent, I take it for granted that they’ll look after their child. I’m talking about the feelings — not the dispassionate logical conclusions, but the feelings — of the child. If you don’t think that that piece of knowledge in that situation will have an effect on the way the child views their parents, you are deluded. And that child’s feelings, even if they’re ultimately incorrect, are still based on deduction from evidence.

    Of course our attitude towards the disabled unborn affects the attitude of the disabled born towards us. How could it not? And no, that doesn’t make them wrong. They have a point.

    So, in summary…

    > I’m just very tired of people like Squander Two, with their refusal to listen, illogicality and reliance on cheap–shots.

    The cheap shots are things you made up, which I never wrote. The mention of a refusal to listen is therefore somewhat ironic. And I’m not being illogical; I’m explaining that millions of people are illogical and that you can’t talk them out of their beliefs using logic, and also that theri illogicality doesn’t make them wrong per se, because there’s a lot more to the human condition than logic. Honesty, I have a degree in logic and it never ceases to amaze me how many people think it’s the pinnacle of human thought. It’s just a tool. It’s very useful for some things. It’s utter crap for others. It is possible for a thought to be logical and wrong or illogical and right.

    tom1:

    > As mentioned before, some parents end up killing themselves because they can’t cope.

    Being constantly told that they shouldn’t be able to cope because they’re in an uncopewithable situation encourages that suicide.

  101. tom1 said,

    December 4, 2008 at 11:12 pm

    Warhelmet… Good to hear from you. I’d been wondering about the whole gender thing on he bus on the way home, and then forgot again (honest). In terms of an argument against screening I think it’s a powerful one. I’m tired, it’s late, but off the top of my head….

    I think it comes down to the cost that the parents are being asked to pay. If having a girl/disabled child is going to reduce a family to penury or cause excessive hardship or distress etc… then I don’t feel inclined to judge people for whatever decision they make. What it then comes down to is whether society is willing to reduce the burden. The question is of course, what is excessive distress… I don’t know, but it should be the same regardless of gender, disability etc….

    I’ll probably need to clarify that a little when I’m less sleepy.

    Bed time… night all!

  102. tom1 said,

    December 4, 2008 at 11:29 pm

    I woke up.

    Squander Two. Maybe we misunderstood you, and doubtless we were careless in explaining our offence, but you did use quite aggressive language. Did you, or did you not call people who fail to cope ‘scum’? A bit harsh, no? The rest of what you said came across as pretty agressive as well. The Nameless was of course wrong to say you said those particular words, however, I advise you to reread the parts about conscience and scum and ask yourself whether you might have given people cause to think that you meant something not unlike ‘bad’ and ‘evil’.

    I accept your explanation of the 15 year old child bit, but please understand, it read like you were making accusations of murder in the context of our understanding of the first part of your post. I genuinely thought you were genuinely implying the 15 year old child had something to fear.

    >Being constantly told that they shouldn’t be able to cope because they’re in an uncopewithable situation encourages that suicide.
    Sure, but the fact of the matter is that unless society does a lot more to help, the burden that we have been discussing will result in a proportion of the people who have to carry it turning out to be scum in one way or another. Do you really think being told that you might not cope is the key think here, or that one is coping with something very difficult?

  103. warhelmet said,

    December 4, 2008 at 11:31 pm

    @Nameless – S’Okay. Do it tomorrow.

    It is worth pointing out to everyone that I feel that debating this stuff is REALLY important because it generally doesn’t get discussed.

    OK, some of the disabled communities do thrash these sorts of things out but the debates tend to be internal to the community. And, dare I say it, cast the “norms” as being a threat.

    Ben – I imagine that as a columnist with an ever shrinking column that you don’t have that much influence over what the Grauniad does, but methinks if someone could do a national survey on attitudes towards disability, it would kill some of our speculation stone-dead.

    Oh dear.

  104. Squander Two said,

    December 5, 2008 at 1:22 am

    tom1,

    > you did use quite aggressive language.

    What, compared to Nameless? Hardly.

    > Did you, or did you not call people who fail to cope ’scum’? A bit harsh, no?

    Well, I explained the situation. We’d just had our first child. My wife nearly died, was in hospital for a couple of months, and took months to recover. So I could either cope or, by running away or killing myself, leave her and my daughter pretty much fucked. It never even occurred to me that I had a choice, to be honest, but I put it to you that choosing the latter option would have marked me out rather clearly as scum, and, quite frankly, I reserve the right to make such judgments about myself. And why shouldn’t I hold other people to the same standards I hold myself? To do otherwise is to say that, hey, I can’t expect the average person to be as good as The Great Me, and that’s really not how I think. I’m not that great. If I can have moral standards, so can everyone else.

    Really, is this controversial? Can I not say that a man who leaves his wife when she’s critically ill and has just had his child is scum? Can I not say that parents who abandon their children when their children need them most are scum? Honestly, it’s so difficult to keep up with Guardian-readers’ morality these days. Is this feminism or post-feminism?

    > it read like you were making accusations of murder

    OK, could have been clearer there. This comes from years of thought experiments in philosophy tutorials. The idea is to come up with hypothetical situations that are illustrative of something. You’re supposed to think about it, not fly off the handle, but I often forget that most people didn’t study philosophy and don’t get this. Which is why people so often describe Peter Singer, a truly brilliant and good man, as “evil”.

    > I advise you to reread the parts about conscience and scum and ask yourself whether you might have given people cause to think that you meant something not unlike ‘bad’ and ‘evil’.

    I re-read the bit about conscience. I have no idea what your problem with it is. It’s not even addressing the whole abortion thing; it’s a counter to gimpyblog’s assertion that the only decent way to oppose an action is to lobby for it to be made illegal and that it is “vile” to let people know what you think of their actions. All I was saying was that letting other people know what we think of their actions is a large part of how we built civilised society.

    I find it fascinatingly weird that you don’t mind people saying unoffensive things like calling people “vile” but get so terribly upset by the use of really nasty language, like the word “conscience”.

  105. The Nameless said,

    December 5, 2008 at 5:23 am

    @Squander Two. “First, here are some words I didn’t use:
    evil
    bigot
    murder
    bad”

    Nonsense. These things were the obvious implication of
    you argument.

    If you, as you now claim, you did not mean them, you were *extraordinarily* unclear, such as to entirely justify the misinterpretation. You should admit it and apologise.

    As for your little thing about having a degree in logic:

    @Squander Two. “Honesty, I have a degree in logic and it never ceases to amaze me how many people think it’s the pinnacle of human thought. It’s just a tool. It’s very useful for some things. It’s utter crap for others. It is possible for a thought to be logical and wrong or illogical and right”

    …I’ve seen that line before. When you can’t win on logical grounds, simply reject the whole principle of logic. Ha, ha. Oh yes, Squander Two, logic may not be the pinnacle of human thought… trouble is, *how do you have an argument without it?* What grounds do we debate on, then? Your subjective beliefs vs mine? (The joke being that I don’t even *have* a firm belief on the issue… it does shade into eugenics, and I do find it troubling).

  106. The Nameless said,

    December 5, 2008 at 6:46 am

    By the way, Squander Two, if you do have training in formal logic it’s hardly a point in your favour, given the way you’ve argued. Does that mean you knew *exactly why* the slippery-slope argument you came in with was specious? And used it anyway?

    Now, have I even stated what *I* think on the main issue? I may as well:

    I think parents of a Down’s Syndrome foetus should not be pressured either way, and they should have the most accurate information available… as opposed to scary worst-case medical scenarios and rosy best-case scenarios from activists.

    It seems (see brainduck’s entry at #93) that there is a lack of research into quality of life– as opposed to just levels of health– for people with Down’s Syndrome. We know that some have virtually no quality of life, while others are just as happy as anyone else. The same thing seems to apply to their relatives. It would help to have some idea of the percentages.

    They should also have a *real* choice. Those who choose to have the baby are looking at a lifetime of care for a more-or-less severely handicapped and dependent offspring… with minimal support. That’s not something that will just disappear if you think happy thoughts. Yes, Squander Two, that situation *is* hard for people to cope with. Some do better than others, but it’s still hard.

  107. The Nameless said,

    December 5, 2008 at 6:49 am

    @brainduck– that was a good point you made about quality-of-life, by the way. I should have said so, but I was feeling pretty seriously cheesed off by then, what with one thing and another. Sorry.

  108. The Nameless said,

    December 5, 2008 at 8:16 am

    @Squander Two.

    As for the actual point of your “thought experiment”– You want me to imagine myself into the place of a teenager who has just been permanently maimed. Am I allowed to imagine myself as a teenager, and the parents as my own? (Don’t see how it can work otherwise.)

    Very well.

    Thinking… thinking. Nope. I cannot imagine fearing *my* parents would murder me. Sorry, I just can’t. Under any circumstances.

    Now, it’s true that they weren’t in the high-risk age-group when they had me– however, I knew, because we had discussed it, that they did not disapprove of abortion for Down’s Syndrome in principle.

    Besides, even if you can show that such paranoia is common– even normal– among disabled teenagers, your whole argument is circular. “Disabled people feel threatened, which proves they’re right to feel threatened”.

    Now… some *are* in a threatening situation and *rightly* fear those with power over them– but that’s not your argument, is it?

  109. brainduck said,

    December 5, 2008 at 9:49 am

    Dr Crippen,
    Thanks for the response.

    First up, please don’t start on the ‘I know what life is like for people with disabilities better than you’ thing – apart from my family then I’ve been working in the area for 10 years, a fair bit of that with people with PMLD &/or severe challenging behaviour. The last teenager I supported to live with his parents in completely unsuitable housing, with inadequate support, was a wheelchair user with PMLD. He didn’t walk, talk, perform basic self-care, had several seizures daily, and had a painful condition often requiring opiate-based pain-killers. He seemed to like watching the Paralympics on TV, with the lopsided grin he usually reserved for his favourite programmes.

    Nameless – both the percentage *and* the absolute numbers are interesting things to know, for various reasons. Ben’s complaint seems to be that the DSA press-released the absolute numbers only. In a press release (rather than a journal article), I’m not convinced that this is dramatically awful.

    I’m not sure why you think that the paralympics ‘humiliate the real disabled’. My visually impaired triathlete friend is ‘really’ registered blind, and ‘really’ couldn’t do the job she wanted because of this (dropped out of teacher training), and ‘really’ has struggled to find work & manage on benefits for a long time before finding a suitable job.

    I don’t see how she’s ‘humiliated’ by taking part in triathlon – mostly alongside able-bodied athletes, but as she has to use a tandem then she’s essentially competing in a slightly different (faster!) event. There’s no particular reason for her not to take up competitive sport as a hobby; having done that she wants to compete against other people in the same event, & Paralympics is the logical extension of that. Being a nationally competitive athlete has actually helped my friend to be included in mainstream events – she trains with a mainstream club & competes in mainstream races most of the time.

    Much disability sport is actually integrated alongside / within ‘mainstream’ events, and mainstream sports quite commonly segregate people by category anyway – running clubs usually hand out prizes by sex and age, and sometimes have vets / single-sex races. If disability sport should not be segregated, then surely it is only logical to insist also that the Olympics become mixed-sex.

    You’ve not shown that funding for disability sport comes out of the same budget as for community care (AFAIK it doesn’t). Therefore you should be arguing for everything you consider unnecessary to have funding cut, including ‘mainstream’ Olympics. It is illogical to single out elite disability sport.

    Squander Two – I’d not use ‘scum’ to people who find they can’t cope. Some conditions are very difficult or simply impossible to manage at home without help – complex medical disabilities, severe challenging behaviour in adults… sometimes just wanting to do the right thing isn’t going to be enough.

  110. tom1 said,

    December 5, 2008 at 11:30 am

    Hi Brainduck,

    I’m glad you posted, I wanted to have a crack at the absolute number vs. percentages issue. Apologies if I’m teaching you to suck eggs here…..

    The original question had been to do with the reporting of figures on Downs in support of claims that there had been a change in the choices people make in favor of keeping Downs fetuses. In relation to this claim ONLY the percentage is relevant. The absolute figure is misleading and gives no information on this question. If I was involved in health/social services funding then it might be helpful, but in relation to the question it was claimed to support it was either foolish nonsense, or willful misdirection.

    Tom

  111. Michelle Dawson said,

    December 5, 2008 at 11:41 am

    The ACOG (American College of Obstetricians and Gynecologists) has a position paper on prenatal (pre- or post-fertilization) sex selection. It was published in 2007. Here are some excerpts:

    “even when sex selection is requested for nonsexist reasons, the very idea of preferring a child of a particular sex may be interpreted as condoning sexist values and, hence, create a climate in which sex discrimination can more easily flourish. Even preconception techniques of sex selection may encourage such a climate.”

    And:

    “The committee rejects the position that sex selection should be performed on demand (position 4) because this position may reflect and encourage sex discrimination. In most societies where sex selection is widely practiced, families prefer male offspring. Although this preference sometimes has an economic rationale, such as the financial support or physical labor male offspring traditionally provide or the financial liability associated with female offspring, it also reflects the belief that males are inherently more valuable than females. Where systematic preferences for a particular sex dominate (13, 14), there is a need to address underlying inequalities between the sexes.”

    So the ACOG recognizes that selection for some kinds of children over other kinds may encourage or result in discrimination against the kind of individual selected against. Maybe some of the experts here should write to them in protest.

    I’m grateful to Dr Crippen for telling me to get a real life, as opposed to a disabled life, which means a lousy sub-standard life, or if not lousy, then the disabled person must be a fake. Indeed, Dr Crippen’s ability to instantly diagnose by the thousands is awe-inspiring–I can just imagine him instantly diagnosing Catherine Frazee as faking it. I’ve also noted that marrying a disabled person is a sure sign that you’re not living a real life. I learn every day.

    I learned from Nameless that if a genetically defined group of people–say, francophones from one area of Quebec–has a much higher-than-usual likelyhood of specific medical conditions, then this genetically defined human variant, “Quebecois,” should be regarded as a disease, disorder, defect, and medical condition.

    Dr Crippen’s opinion of disabled athletes reminds me of the reasons once given to keep women out of the Olympics (Pierre de Coubertin:
    “If such sports are played by women, would they constitute a proper spectacle to offer the audience that an Olympiad brings together? We do not think this may be claimed to be so.”). And of course, by Dr Crippen’s logic, if women want to lead real lives, women would compete againts men in all sports. After all, Hilary Clinton isn’t going to be the “women’s Secretary of State,” for pity’s sake.

    And yes, Dr Crippen, disabled people are just as human as nondisabled people. We are just as good and just as bad. We run the full gamut of humanity. Disability does not confer virtue, any more than race or gender do. Sorry about that.

    Some of this discussion also reminds me of the invention of the “homosexuality agenda.” This is a way to construe the effort by gays to secure basic equality and rudimentary human rights (the wish to walk around safely) as an elitist and dangerous plot to destroy society as we now know it (etc.). Here, the wish of disabled people to be seen as equal (and no, “equal” does not mean “the same” and no one should have to say so) has been construed as sinister, selfish, deluded, an appalling drag on society (etc.).

  112. tom1 said,

    December 5, 2008 at 11:42 am

    On a personal level, I also have mixed feelings about the Paralympics. On one level, it is clearly good to see people like oneself being successful. I can also see an argument in terms of normalizing society’s attitudes to disability. I do think though that there is something in what Dr Crippen had to say, that it allows society to slap itself on the back about how noble it’s being, while the same society allows carers to work themselves to exhaustion etc. etc. etc. for next to no reward.

  113. hamlets ghost said,

    December 5, 2008 at 12:01 pm

    I had amnio for DS, because I was not prepared to be a DS carer.

    All people who require care from others could at least acknowledge that that care is provided, and it isn’t always easy to provide. It’s provided by individuals and the state, and some of them find it immensely rewarding. Some don’t.

    If I am expected, as a capable adult, to care for myself, on what grounds can I demand the right to be cared for?

    It is not a right, it is a privilege – and it is good to be part of a society which does humanity honour by attempting to care.

    Is there a duty of care? If so, what is the equivalent duty of return?

  114. ForeverAutumn said,

    December 5, 2008 at 1:07 pm

    @tom1
    I can understand a position that abortion per se is wrong. My understanding of many of the posts so far is that abortion is OK, but not on the grounds of disability.

    Or maybe some people see abortion as a much more grey area. From my point of view, the foetus is an emerging person whose life does have some value (more than an appendix but less than a neonate), but legal abortion is necessary because pregnancy and childbirth are a heavy burden to place on someone who doesn’t choose it.

    @gimpyblog
    “imposing morality by inflicting guilt is utterly vile no matter how good you think your argument is”

    If you argue against aborting DS pregnancies, you’re placing guilt on people who choose to do so. If you argue for them, you’re placing guilt on people who choose to keep their DS babies and now worry about their future. Are you suggesting we place a ban on such discusssions altogether? Should we ban all other discussions that might make parents (or potential parents) feel bad? Breastfeeding, vaccinations, obesity, discipline, amount of TV kids should watch, effects of divorce, etc.

    @Squanderbug
    All I was saying was that letting other people know what we think of their actions is a large part of how we built civilised society.

    If you took this argument outside the context of abortion, do you think anyone would be offended by it?

    @Nameless
    Nonsense. These things were the obvious implication of you argument.

    Nope, not obvious to me.

  115. treeofpain said,

    December 5, 2008 at 1:52 pm

    Previous posts have mentioned DS as a spectrum of levels of disorder (insert your own approved word here that does not offend). It is therefore disingenuous to imply that all DS births end up as useful/happy/functional-at-all people. Those you *can* meet are only a percentage of the total (yep there it is a percentage again), even, that make it out of the womb. Is there a way in-utero to distinguish between them? non-risky?
    Too much medicine here, have some physics: you can’t go back. If you exist today there is no scenario of ‘would you have aborted me??’ or ‘would you want to have been aborted? (for e.g. genetic short sightedness…). The answer is : a pointless question to ask, I did not exist until a significant time **after** birth (generation of personality or conscience). This may have been called the arrow of time, don’t know current fad. Ask these questions again if the universe starts to collapse.

  116. The Nameless said,

    December 5, 2008 at 1:54 pm

    @hamlets ghost

    Is there a duty of care? If so, what is the equivalent duty of return?

    I don’t know if you can talk of a “duty of return” when the recipients of care may not be able to do anything very practical in return.

    I doubt anyone wants to have to be continually grateful all the time either. Humiliating, I should think.

    That said, it’s a bit hard not to see the attitude of certain parties as being pretty much, “We hate you! Now give us stuff!”

  117. The Nameless said,

    December 5, 2008 at 1:56 pm

    @Forever Autumn

    “Nope, not obvious to me.”

    No, it wouldn’t be, would it?

  118. warhelmet said,

    December 5, 2008 at 2:00 pm

    @hamlets ghost:-

    Fine, you made a decision because you were not prepared to be a DS carer. But as you state, the burden of care can also fall on the state.

    State provided care is by its very nature finite. We see this in the NHS with issues over funding of certain drug treatments and the arguments surrounding top-up funding for some of these drug treatments. Essentially, we the people, are not prepared to allow state provided care a bottomless purse. Not that we really get the chance to decide on this in a concrete way.

    As the state provides care, should it not have a say in these matters? Most people’s reaction will be, no, of course the state has no role interfering with reproduction. It would be a violation of a fundamental human right.

    But, if we view the NHS as an arm of the state, it then boils down to whether, say, genetic counselling is a tool for social engineering? Whilst medics do not have the power to insist on abortion, they do wield *expert* power. Some people do invest considerable authority in that white coat. Whilst you or I may have no problem arguing with medics about a course of treatment, some people do.

    I disagree that being cared for a privilege. It is a right. And there is a reason that I say this. If we believe that care is a privilege, then it is much easier to withdraw care. You don’t have the same ethical dilemna that you would if you viewed care as a right. OK, the care you might get is sub-optimal, but that’s not the point.

    It is worth remembering that all states engage in social engineering of different sorts. Lifting children out of poverty by 2012 – now that is social engineering on a grand scale.

    I’m not an ethicist. These are very murky waters for me. Again, I really don’t know how I feel about this.

  119. tom1 said,

    December 5, 2008 at 2:25 pm

    ForeverAutumn,

    >>I can understand a position that abortion per se is wrong. My understanding of many
    >>of the posts so far is that abortion is OK, but not on the grounds of disability.
    >Or maybe some people see abortion as a much more grey area. From my point of view,
    >the fetus is an emerging person whose life does have some value (more than an
    >appendix but less than a neonate), but legal abortion is necessary because pregnancy and
    >childbirth are a heavy burden to place on someone who doesn’t choose it.
    Apologies, I oversimplified my views. My opinion on abortion is the same as yours as
    you stated it.

    >If you argue against aborting DS pregnancies, you’re placing guilt on people who
    >choose to do so. If you argue for them, you’re placing guilt on people who choose to
    >keep their DS babies and now worry about their future. Are you suggesting we place a
    >ban on such discussions altogether? Should we ban all other discussions that might
    >make parents (or potential parents) feel bad? Breastfeeding, vaccinations, obesity,
    >discipline, amount of TV kids should watch, effects of divorce, etc.
    Is anyone here arguing FOR aborting DS pregnancies? I am arguing for choice, I make
    no generalized moral judgment on the issue. Guilt, regret, resentment etc… are emotions
    that will hang around this issue whatever society decides to do.DS pregnancies, you’re placing guilt on people who choose to
    >do so. If you argue for them, you’re placing guilt on people who choose to keep their DS
    >babies and now worry about their future. Are you suggesting we place a ban on such
    >discusssions altogether? Should we ban all other discussions that might make parents
    >(or potential parents) feel bad? Breastfeeding, vaccinations, obesity, discipline, amount of
    >TV kids should watch, effects of divorce, etc.
    Is anyone here arguing FOR aborting DS pregnancies? I am arguing for choice, I make no generalized moral judgement on the issue. Guilt, regret, resentment etc… are emotions that will hang around this issue whatever society decides to do.

  120. tom1 said,

    December 5, 2008 at 2:28 pm

    Sorry… I garbled that last one some how……

    ForeverAutumn,

    >>I can understand a position that abortion per se is
    >>wrong. My understanding of many
    >>of the posts so far is that abortion is OK, but
    >>not on the grounds of disability.
    >Or maybe some people see abortion as a much more
    >grey area. From my point of view, the fetus is an
    >emerging person whose life does have some value
    >(more than an appendix but less than a neonate), but
    >legal abortion is necessary because pregnancy and
    >childbirth are a heavy burden to place on someone
    >who doesn’t choose it.
    Apologies, I oversimplified my views. My opinion on abortion is the same as yours as you stated it.

    >If you argue against aborting DS pregnancies, you’re
    >placing guilt on people who choose to do so. If you
    >argue for them, you’re placing guilt on people who
    >choose to keep their DS babies and now worry about their
    >future. Are you suggesting we place a ban on such
    >discussions altogether? Should we ban all other
    >discussions that might make parents (or potential parents)
    >feel bad? Breastfeeding, vaccinations, obesity,
    >discipline, amount of TV kids should watch, effects of divorce, etc.
    Is anyone here arguing FOR aborting DS pregnancies? I am arguing for choice, I make
    no generalized moral judgment on the issue. Guilt, regret, resentment etc… are emotions
    that will hang around this issue whatever society decides to do.

  121. The Nameless said,

    December 5, 2008 at 2:59 pm

    @warhelmet.”Essentially, we the people, are not prepared to allow state provided care a bottomless purse. Not that we really get the chance to decide on this in a concrete way.

    As the state provides care, should it not have a say in these matters?”

    Only, I think, if the financial burden of state-provided care were to become overwhelming… I suppose we need to know how much extra taxation the public is willing to put up with.

    It is worth remembering that all states engage in social engineering of different sorts. Lifting children out of poverty by 2012 – now that is social engineering on a grand scale.

    …which won’t work, I bet.

  122. Squander Two said,

    December 5, 2008 at 4:03 pm

    ForeverAutumn:

    > If you took this argument outside the context of abortion, do you think anyone would be offended by it?

    Good point. Of course not. People get weird about defending abortion. Not saying I want it banned, just that those who argue in favour of it frequently make strange arguments.

    tom1:

    > I appreciate that much of what you said about logic was a criticism of the state of society, but are you suggesting here that we shouldn’t think logically about the illogical nature of society? I’m not quite sure what you mean.

    Well, this just goes back to my first post. What I was responding to at the time (if anyone can be arsed remembering or reading that far back) was the reaction to those genuinely disabled people who have posted on here about their real experience of how certain attitudes lead to certain other attitudes and therefore how certain policies lead to certain prejudices. The reaction to them was pretty much universally “But there is no logical reason to reach that conclusion from these premises.” What I was pointing out was that, when someone really is the victim of prejudice (and they say they are, and they should know), and they know what part of the cause is because they get to see the effects close up, it’s no good pointing out to them that, if every member of the public were to consider the issue purely logically and in isolation, they would find that there’s no rational reason for them to have the prejudices they do. What use is that to anyone? We’re talking about government policy here. Policy has an effect. Is it logical that giving local authorities extra powers so that they can help to catch terrorists will lead to their spying on parents to check they’ve not lied about which school cachement area they live in? No. But, now we know that that is in fact what happened, should a government looking at writing such legislation take it into account? Of course they should; not to do so would be irresponsible. They can’t just say, “Well, it’s not logically necessary, so there’s no need to consider it.” This is the real world.

    > Is the woman in this story scum?

    Is this a trick question?

    “A woman who murdered her disabled daughter and then killed herself…”

    Yes, she’s scum. Absolutely. She murdered her disabled daughter. Killing herself afterwards doesn’t make that OK. What, you’re not willing to judge even this behaviour harshly? I have to ask: are you a parent?

    This is about responsibility and trust. You’re responsible for looking after someone. You kill them instead. If I leave my dog with to look after while I’m on holiday and you kill her, you’re scum. Do it to my daughter, and you’re a million times worse. Do it to your own, and, hey, I’m an atheist, but this is what hell was invented for.

  123. tom1 said,

    December 5, 2008 at 4:16 pm

    Squander Two,

    O K

    In answer to your statements about logic. I now understand you to be saying that social policies often have unintended consequences outside of their stated purpose. I agree. It’s often hard to predict them ahead of time, but I’m sure it happens all the time.

    In regard to my question… I did not intend it as a trick. I was using it in the same way as your rhetorical question. It seems to have done the trick and drawn out a point of difference between us. No I don’t think she’s necessarily scum. I think the situation is necessarily sad.

    In answer to your question. I am a parent. I have a son who just turned one. He’s ‘normal’, but we were high risk for chromosome problems with him. We had scans, but no amneo so we had to think about this when it mattered. We decided we’d keep him if it was downs, I suspect we wouldn’t if had been Edwards syndrom (I think I’m remembering that right). Our decision had a lot to do with the age of my partner (39 at the time).

    Do you have any more questions?

  124. The Nameless said,

    December 5, 2008 at 4:40 pm

    @Squander Two, the trouble is that in your first post you did *not* say that screening would lead to increased prejudice against people with Downs Syndrome, you said it WILL.

    “Sure, there’s no rational reason why screening foetuses for Down’s should inevitably lead to prejudice against adults with Down’s; it’s not necessary, it’s not inevitable. But it doesn’t take much study of human nature to conclude that that is exactly what will happen”

    I believe you know perfectly well what logical fallacy you’ve committed there.

    Besides… since screening has been in place for, what, twenty years?– isn’t the question rather *if* the prejudice against Down’s Syndrome adults– which has always existed– has significantly increased. (Though even then you’d really have to show that the screening was causing the prejudice.)

    Besides– as I said in a post which everyone ignored– all this talk of disability rights and duty of care implies a *great deal* of faith in human nature, does it not?

    As I said, it’s all very well to say that logic doesn’t cover everything, but… what’s left? Your feelings/convictions/beliefs/hunches vs other people’s.

    Fine. I don’t mind you having a completely different view to me… but is there then any *point* in continuing the argument?

  125. The Nameless said,

    December 5, 2008 at 4:52 pm

    Correction: “would” in this paragraph is a typo and should read “could”. Hope that makes it clear.

    “@Squander Two, the trouble is that in your first post you did *not* say that screening would lead to increased prejudice against people with Downs Syndrome, you said it WILL.”

  126. hamlets ghost said,

    December 5, 2008 at 6:35 pm

    warhelmet, you state
    “I disagree that being cared for a privilege. It is a right. And there is a reason that I say this. If we believe that care is a privilege, then it is much easier to withdraw care. You don’t have the same ethical dilemna that you would if you viewed care as a right. OK, the care you might get is sub-optimal, but that’s not the point.”

    Surely rights only exist insomuch as the state or society is willing to agree to them?

    This is a point that I struggle with – is the Declaration of Human Rights meaningful or is it as much a religious doctrine as the ten commandments.

    Do people with poor social skills have a right to have others be extra-nice to them? At want point is the “right to care” line drawn?

    As a primate, is it my right to kill my children, kill my mate’s children and mate with whoever I like – seems perfectly legal if you’re a chimpanzee

    State/society is made up of individuals, and it seems to be that the balance of power and behaviour between the individual and the state is one of the philosophical theorems that just keep running.

    Sorry about the fuzzy thinking, but I demand my right to remain prejudiced….

  127. The Nameless said,

    December 5, 2008 at 6:37 pm

    @Squander Two– I actually agree, you see, about the possibility of unpleasant social consequences for things like this. What I don’t believe is that a.) they’re inevitable and b.) they’re never worth it.

    @tom1.”Squander Two,
    Incidentally, since I get the impression you think it’s important that I have direct experience of these things.”

    Oh, is that what he wants?

    If I were to mention that I do myself have a mild genetic disorder, severe versions of which have been screened out for decades… does that get me any cred?

    Trouble is, I’m not really one for personal stories.

    –And yes, Michelle, it is a disorder– a GENETIC DEFECT! *gasp* …unlike
    that perfectly normal, natural and beautiful thing, Down’s Syndrome. I mean, hey, what does the weight of mainstream medical opinion matter between friends? ;)

  128. tom1 said,

    December 5, 2008 at 6:40 pm

    Hamlets Ghost,

    you said:
    “Surely rights only exist insomuch as the state or society is willing to agree to them?”
    and I couldn’t agree more.

  129. tom1 said,

    December 5, 2008 at 6:47 pm

    The Nameless,

    Do you read the Guardian as well? I’m just wondering if any of Squander Two’s prejudices are correct? When I do pay for news, it’s the Guardian, so he’s bang on the money for me. Equally reading the blog of a Guardian columnist his accusation is probably shooting fish in a barrel.

    It would be nice if you were read something solidly right of centre.

    “Trouble is, I’m not really one for personal stories.”
    I knew I over-shared!

    Tom

  130. The Nameless said,

    December 5, 2008 at 6:53 pm

    @hamlet’s ghost.

    “This is a point that I struggle with – is the Declaration of Human Rights meaningful or is it as much a religious doctrine as the ten commandments.”

    In other words, are there really any such things as “natural rights”, or just as much a social construct as legal rights? The latter, I think… but perhaps it’s necessary for us to act as though they’re real anyway?

    I don’t know.

  131. The Nameless said,

    December 5, 2008 at 7:20 pm

    @tom1 said,

    “Do you read the Guardian as well? I’m just wondering if any of Squander Two’s prejudices are correct? When I do pay for news, it’s the Guardian, so he’s bang on the money for me. Equally reading the blog of a Guardian columnist his accusation is probably shooting fish in a barrel.
    It would be nice if you were read something solidly right of centre.”

    Alas, no, I’m another lefty. But if you’re talking about his points up at #33… kind of irrelevant. Sure, sometimes there are unforeseen consequences… that doesn’t mean there always are or thatwe should never do anything that might lead to them (i.e., anything.)

    The point he makes that we should *prepare* for unforeseen consequences is excellent. I never said we shouldn’t. We probably need more legislation against genetic-based discrimination, that kind of thing, do more to protect the rights of the disabled.

    What I don’t understand is why he thinks *any* of this represents a case against screening for Down’s Syndrome.

  132. tom1 said,

    December 5, 2008 at 7:31 pm

    The Nameless,

    In so far as our discussion with Squander Two goes, particularly about unforseen circumstances, so much of it is just a strawman so big you could stick Edward Woodward in it.

    Tom

  133. The Nameless said,

    December 5, 2008 at 8:05 pm

    @tom1. You know something? We’ve been conned into debating the possibility of negative social consequences from something that has been around for twenty years without having negative social consequences! (As far as anyone knows, anyway.)

    …Squander Two is too clever for us.

    Meanwhile– as mentioned before– new genetic tests are springing up like mushrooms. I mean, it’s not just embryos… you can get yourself tested for predisposition to cancer and all kinds of fun stuff.

    If we’re going to raise the spectre of unforeseen social consequences, I think that’s a bit more of a current issue.

  134. The Nameless said,

    December 5, 2008 at 9:04 pm

    @Squander Two.

    “What I was responding to at the time (if anyone can be arsed remembering or reading that far back) was the reaction to those genuinely disabled people who have posted on here about their real experience of how certain attitudes lead to certain other attitudes and therefore how certain policies lead to certain prejudices.”

    Uh-uh. No one has EVER denied that disabled people meet with discrimination.

    What Michelle, Gonzo Girl, Coobeastie, brainduck and anyone else I’ve left out said was that screening for DS, which none of them has (unless Gonzo is going to surprise us), threatened their sense of self-worth.

    (They also may have said– I can’t be bothered checking either– that it would lead to more discrimination against them… but ah, here we are back on the slippery slope. WHEEEEEE! Down we go.)

    I’m sure they’ve all had the hell oppressed out of them. But what they are talking about now is their emotional reaction to the fact of DS testing– *not* their personal experience of discrimination.

  135. The Nameless said,

    December 5, 2008 at 9:34 pm

    I mean… I’m not trying to dismiss people’s emotional responses, or say they’re worthless… but it’s just not a case, in my view.

  136. The Nameless said,

    December 5, 2008 at 9:58 pm

    @hamlet’s ghost… I was just thinking of a better way of putting it. I think the concept of natural rights/human rights is that they’re rights you always have in principle, even if you don’t in practice.

  137. Squander Two said,

    December 5, 2008 at 10:21 pm

    Oh, and…

    tom1:

    > but that’s not to say I wouldn’t do those things under the right circumstances. Sometimes good people crack, sometimes there is no obvious morally correct choice.

    Yeah, absolutely: sometimes, you have to choose the lesser of two evils. But being the lesser one doesn’t mean it’s not an evil.

  138. Coobeastie said,

    December 5, 2008 at 11:35 pm

    @ The Nameless: “I’m sure they’ve all had the hell oppressed out of them. But what they are talking about now is their emotional reaction to the fact of DS testing– *not* their personal experience of discrimination.”

    Eh? You’ve said both that we’re less disabled than people with DS (in earlier posts), and also here that our personal experience of oppression is not transferable to those with DS. Is this some sort of inverse oppression ratio, wherein less disabled people are more oppressed than severely disabled people?

    Incidentally, I do find this a morally difficult issue; as a feminist I believe that control of fertility (both contraception and abortion) is at the core of women’s rights. However, because of societal attitudes (which includes lack of support for children and adults with disabilities) this strikes against disability rights – the decision is weighed towards abortion because of those factors.

    I think the comparison to gender-choice abortions is a salient one; there is nothing inherently ‘wrong’ with being a woman (unless under Nameless’ broad category of ‘genetic defects’ we’re putting two X chromosomes). However, in some societies women are a burden on their families (dowries) and generally have a worse social position than males. The social pressure is to be tested and abort in the case of a female fetus. In both disability and gender testing there is something of a feedback loop; social pressures encourage the abortions, which will change the population profile, which may well in turn reinforce the social pressures. As with all loops, the question is where and how to cut them. Putting the pressure on the pregnant woman (either way) seems utterly wrong; yet that’s the ‘easy’ point, because there is a single discrete action (abort or not). Focus and blame then again goes on women and their fertility choices – much easier than broader social issues.

    Oh, and Nameless, if you pity me then I pity you. I sometimes forget how narrow some people’s horizons are.

  139. The Nameless said,

    December 6, 2008 at 5:28 am

    @Coobeastie. It’s a perfectly simple point. You feel personally threatened by DS screening.

    I’m sorry that you do, but the strength of your reaction is not an indication of whether something is right or wrong. It’s not “direct experience”. It’s your subjective response. Clearly, DS screening *cannot* be a genuine threat to you. You don’t have Down’s Syndrome and you’ve already been born. See?

    As for pitying you… I was just trying to be honest. What I was trying to say is that pity is an involuntary reaction people can’t help… much like your feeling of being threatened by screening.

    The problem, I think, is that other people can rub people’s faces in their “pity”, which I guess is why it’s another of these forbidden words. However– if you are *highlighting* your experience of suffering and oppression– *expect pity*. That’s the way the rest of the world works. We’re only human.

    You see, Coobeastie, it’s true what Michelle Dawson says: I have a “colossal failure of imagination” about the lives of the disabled. I’m trying, but I can’t understand what’s going on in your head, beyond the fact that your life has been inconceivably different from mine, you’re deeply damaged and everything I say hurts you, whether I want it to or not.

    Meanwhile, you either have no interest in understanding my point of view, or else find it equally incomprehensible.

    What it comes down to, in the end, is that we can’t discuss anything. We can’t engage in debate. We’re from different planets. Up until this debate started I– being a starry-eyed idealist– thought there was a universal experience of being human that overrode everything else. Guess not.

  140. The Nameless said,

    December 6, 2008 at 6:49 am

    @warhelmet. I’m not quite sure where the other two are coming from (on the “rights” issue). I think it’s a valid question: do “human rights” (or other ethical principles) represent

    a.) absolute values, with a sort of abstract Platonic existence,

    or

    b.) social consensus? Honestly, I don’t know. Is it best to just *act* as though b.) is true?

    And even if a.) is true, there’s the question of how you translate those abstract rights into reality, and indeed what they actually mean.

    I think the original point hamlet’s ghost was making– in a rather muddled way– is that since a society can *most certainly* strip away people’s rights in a practical sense, those that try to uphold them deserve at least some credit for goodwill.

    And… since the slippery slope’s the place to be theis season ;) …what really happens if you remove pity (that word! *gasp*) from the equation? Will “rights” be able to pick up the slack?

  141. tom1 said,

    December 6, 2008 at 1:06 pm

    The word ‘pity’ seems to be causing a load of problems and bad feeling. So I thought I’d take a look back at how it’s been getting used.

    **************************************************
    It was introduced by Gonzo Girl after The Nameless said:

    The Nameless: “I’m sorry to hear you have a disability, Gonzo Girl, and I can’t begin to guess what problems you’ve faced, but please don’t project your negative feelings onto me.”

    Gonzo Girl: “How kind of you to pity me instead, and assume I have negative feelings, because of a disability.”

    aa: “Pitying people who have the problems I mentioned above is obviously ridiculous and patronising. But it’s equally ridiculous, and equally damaging, not to regard those problems as such.”

    Warhelmet: “It gets worse. I do respite care for learning disabled children on a voluntary basis. I had to do a lot of training with other people and to be honest, a lot of their attitudes stank. I won’t vent the whole of my spleen but… Pity is not enabling. The object of your pity is disabled by that pity. Oh isn’t sad that X can’t do activity Y? No. Pity is an invalidation of the person. Is it not better to celebrate what they can do? Is it not better to enable them to do more? Pity condemns people to failure.”

    The Nameless: “Well, I may as well admit now that I *do* pity (but not despise) disabled people, I *am* very glad I’m not one, and I *do* tend to assume that, other things being equal, I’ve had a better life. I also should greatly prefer that any children I may have down the track be normal. I’m sorry if that’s a hurtful thing, but it’s not something I can help… and so far no-one has given me a single reason to see things differently.”

    Coobeastie: “Oh, and Nameless, if you pity me then I pity you. I sometimes forget how narrow some people’s horizons are.”

    The Nameless: “As for pitying you… I was just trying to be honest. What I was trying to say is that pity is an involuntary reaction people can’t help… much like your feeling of being threatened by screening.

    The problem, I think, is that other people can rub people’s faces in their “pity”, which I guess is why it’s another of these forbidden words. However– if you are *highlighting* your experience of suffering and oppression– *expect pity*. That’s the way the rest of the world works. We’re only human.”
    **************************************************

    I think it’s important that ‘pity’ was something attributed to The Nameless, rather than a word he/she chose. Coobeatie uses it to attack The Nameless, meaning to imply something like ‘pity’==’I look down on you’. I don’t think the negative aspects of pity as used by Warhelmet, Coobeastie, Gonzo Girl etc… are things I feel to any great extent, I don’t think that Coobeastie’s usage is what The Nameless means either. It is a word that has been chosen by Gonzo Girl because it has negative connotations to you guys and vaguely approximates what I and I think The Nameless feel.

    What do I mean, when I say I pity a disabled person? I don’t mean to imply that they are less of a person than me, I don’t mean to imply that they are intrinsically worth less than me, I don’t mean to patronize them. What I do mean to imply is some kind of fellow feeling with another person and the load they are carrying. Sometime it turns out I am wrong and they aren’t burdened at all, sometimes they are. If you suffer, I *pity* you in this sense.

    Having said that, I would be lying if I said negative feelings that would offend you don’t ever creep in. Probably mostly for severe mental disability where I find it harder to make the imaginative leap to seeing them as another person, but that is my failure and I admit it. I certainly don’t intellectually support my emotional reaction. It absolutely does not come into my feelings of ?pity? in respect to the problems of anybody able to post to this or any other Blog.

    Does anybody have a problem with my definition of my pity? Most particularly, does anybody feel offended by it?

  142. tom1 said,

    December 6, 2008 at 1:08 pm

    The irony of it, given the original topic, is that the few DS people I’ve met seem pretty happy. I wouldn’t have said I pity them as a group in any sense. Their carers perhaps….

  143. The Nameless said,

    December 6, 2008 at 2:20 pm

    Yet another typo: my last post should have read “Is it best to just act as though a.) is true”, i.e., maintain the belief that rights are absolute.

    @tom1. Hey, I’d never claim people with Down’s Syndrome can’t have good, happy lives… but I still feel sorry for them that they don’t get to have full mental functioning. Okay?

    (However– maybe I should have said this earlier– I have a friend who used to work with *badly* impaired kids, many with DS… let’s just say they’re not so well off.)

    What I cannot deal with is someone who says, “How can you disregard my pain and suffering?” *and* “How dare you feel sorry for me?”

    @Coobeastie. I just noticed your little dig at “Nameless’ broad category of ‘genetic defects'” Oh you’re another one that thinks I’m pushing the boundaries by not accepting your absurd belief that Down’s Syndrome is a normal variant?

    Look, I’m all for the disabled being integrated more into society… but it’s not just society that will have to adapt. For a start, you guys need to stop relying on comforting fairy tales.

  144. tom1 said,

    December 6, 2008 at 3:01 pm

    The Nameless,

    When you say you’feel sorry’, do you mean:

    a) sorry for some imagined normal person they might have been and the things they might have done.

    Or

    b) sorry for any unhappiness, pain etc… they may be experiencing.

    Is a) what people are getting huffy about in the case when there was never a ‘normal’ person that was lost?

  145. The Nameless said,

    December 6, 2008 at 3:05 pm

    By the way…. This is prompted a comment of Michelle Dawson’s that I missed earlier. She’s saying that because things like homosexuality were once classed as disorders, the term “disorder” or “medical condition” is inherently insulting.

    Um…. no. The fact that a normal trait can be wrongly classed as a medical condition doesn’t mean there are no medical conditions or disorders, or that it’s offensive to describe a *real* one as such. Down’s Syndrome happens to be one of them.

    And she says I likened neurological conditions to the common cold. No, I pointed out that “normal” people often suffer from the common cold, and aren’t horrified that it gets described as a “medical condition”.

  146. tom1 said,

    December 6, 2008 at 3:20 pm

    The Nameless,

    Parents etc.. asside, would you feel sorry, or whatever, for a hypothetical DS person who was basically happy and enjoyed life?

    For myself, thinking deeper about this, I suppose I might feel sorry that there were things/thoughts/experiences that I couldn’t share with them. But that would be more sorrow for myself, than for them.

    Does that make sense? I’m starting to talk hypothetical waffle, so I’ll stop.

  147. The Nameless said,

    December 6, 2008 at 3:27 pm

    @tom1. I am sorry for them mainly for

    “b) sorry for any unhappiness, pain etc… they may be experiencing.”

    with a touch of a.) in that I can’t help feeling it’s a pity when people miss out on things I take for granted– even when they may not know or care. (Doesn’t have to be about disability, either.)

    “Is a) what people are getting huffy about in the case when there was never a ‘normal’ person that was lost?”

    I think you may be on to something. Maybe they think I’m expressing regret for the loss of a normal person who “should” have been born instead of them… or something like that.

  148. The Nameless said,

    December 6, 2008 at 3:38 pm

    @.tom1

    “Parents etc.. asside, would you feel sorry, or whatever, for a hypothetical DS person who was basically happy and enjoyed life?”

    *shrugs* Only in the sort of abstract way you mention.

  149. tom1 said,

    December 6, 2008 at 5:51 pm

    Sounds good to me. I guess I’d still be interested to hear if people still find the current definition of ‘pity’ offensive. If not I wonder why people insisted on interpreting it differently previously.

  150. The Nameless said,

    December 8, 2008 at 3:17 am

    Probably because they’re used to having it forced on them… also because this lot all have neurological problems which I suppose affect the way they perceive things… and because there’s a lot of ideology involved.

    I’ve talked to a relative who teaches literacy to people with various problems, including disability, and has done courses and workshops on integration. She wasn’t a bit surprised by the reactions on this tread; she says disability issues are a minefield and that we were being pretty silly arguing with this lot. (Or even, I think she implied, *talking* to them.)

    I don’t know… if you say, “back off and leave ‘em to the experts”… what happens to the goal of social inclusion?

  151. tom1 said,

    December 8, 2008 at 10:53 am

    So Bad Science has opened an outreach program for neurologically impaired internet trolls. I suppose it was time that the skeptic community offered them something beyond the JREF conspiracies forum; I just wish Ben had mentioned this new program.

    Please give generously! One naïve, credulous post can feed a troll for a week. Don’t let your local troll go hungry over the festive period.

  152. The Nameless said,

    December 8, 2008 at 2:31 pm

    @tom1.By the way, in one of the weird late-appearing posts, I see Squander Two has pulled the classic “get the liberal to condone murder” trick on you. The man is clearly an experienced debater, and has known *exactly* what he’s doing all along. (I suspect that’s why he didn’t want to argue on logic.)

    Thanks for keeping things civilised. I’m prone to turning vicious after a while.

  153. tom1 said,

    December 8, 2008 at 7:40 pm

    @The Nameless. Thanks,
    SquanderTwo was a troll, its GonzoGirl and friends who bothered me. I do so want them to understand.

    See you in another thread!

  154. MedsVsTherapy said,

    December 9, 2008 at 4:01 pm

    Brainduck said:
    “My brother is affected to the point that he’s not managed several attempts to live independently, get a degree or job. I’ll probably have to look after him when our parents aren’t able. So what? This isn’t a ‘tragedy’, it’s just life.”

    Good point! There are many people out there who have no chromosomal abnormality, yet are a huge burden to everyone else. Can we kill them, also? At what point can we kill off our elders when they are no longer productive, and require lots of medical care simply to keep them gurgling along? It is such a hassle to make the occasional visits, change their diapers, etc.

    Why do we pick on the unborn?

  155. MedsVsTherapy said,

    December 9, 2008 at 4:15 pm

    “A woman who chooses to abort on the basis of disability is allowed to do so by law.”

    Exactly. Here in the U.S., you generally are able to abort with no reason for justification. Yes, there are a handful of caveats, but generally, this is the case. Modest differences and twists on law occur because health is regulated by the states, not by fed govt.

    So, if you want to abort you fetus because you have detected that it is female, not male, that is OK, and is a documented recent phenomenon in the U.S. (PMID 18378890). I don’t know whether this is the trend in the U.K. yet.

    The disAbilities community is beginning to be alarmed about abortion for likely disabilites such as Downs because it basically is indicating that most of us are worthy of being born except those with certain disAbilites – so these advocates see themselves in these statistics.

    The same-sex community is getting alarmed every time some new finding comes out that supports genetic basis for same-sex attraction, since the suspected likelihood is that people may abort a child on the likelihood that it will be same-sex attraction.

    So, no, you don’t need to meet a certain justification to have an abortion in the U.S. You just need to cover the cost of the procedure.

  156. The Nameless said,

    December 9, 2008 at 6:05 pm

    @MedsvsTherapy. I have answered your silly and deliberately offensive question already.

    But here it is again: we “pick on the unborn” because they *are* unborn. Once they’re born they’re people.

    It may astonish you to learn– in fact, judging from the responses I’ve seen on this thread, it WILL astonish you– that even those of us so supremely wicked and selfish as to prefer, should we have the option, *not* to have to spend the rest of our lives caring for a handicapped person do have occasional qualms about murdering our grandparents. Really. We do.

    –Oh, I do like this:

    “The disAbilities community is beginning to be alarmed about abortion for likely disabilites such as Downs because it basically is indicating that most of us are worthy of being born except those with certain disAbilites – so these advocates see themselves in these statistics.”

    Oops! You forgot to write “disability” in CamelCase the secondTime! Now what will your disAbledFriends think of you? What’s become of your politicalCorrectness?

    Seriously– I am sick and tired of hearing about people who are somehow afraid of being the victims of retroactive abortion. Enough.

    MedsVsTherapy, I have been arguing for days with better trolls than you. Go away and take your fanatical opinions with you.

    -By the way, I have a genetic defect myself and I do not feel threatened by abortion for Down’s Syndrome (or is it downsSyndrome). You and your friends do not speak for everyone, you just think you do.

    –theNameLess.

  157. tom1 said,

    December 10, 2008 at 9:49 am

    @MedsVsTherapy
    Surely this is a general argument against abortion? I mean we don’t allow euthanasia in adults, so why for a foetus? Once you rule out things that wouldn’t be allowed for adults you’re just left with abortion where the pregnancy would kill the foetus and the mother. Even then you’d be on pretty delicate ethical grounds for adults.

  158. tom1 said,

    December 10, 2008 at 10:32 am

    @MedsVsTherapy
    “Why do we pick on the unborn?”
    If we are asking, why is it OK to treat foetuses differently to babies/children/adults? Couldn’t you equally say, why treat unfertilized eggs and sperm differently to fertilized eggs?

    Isn’t this an arbitrary moral judgement made my society?

  159. The Nameless said,

    December 10, 2008 at 10:53 am

    Well, perhaps MedsVsTherapy is just anti-abortion in general, which is at least a consistent position.

    If so, MedsVsTherapy, you’re in the wrong thread.

  160. tom1 said,

    December 10, 2008 at 6:45 pm

    @MedsVsTherapy
    “…indicating that most of us are worthy of being born except those with certain disAbilites”
    Going back to the conversations of some days ago, this is exactly the choice of words that I think Gonzo Girl, Michelle and others would have used and one of the points where I think we diverge. “Worthy” is just not a word I would use here, not without fleshing out in a lot more detail exactly what you mean. I’m curious to learn what you think.

    One of the problems seems to be that people reason whatever ‘worth’ you assign to a foetus you are also assigning to a child, or an adult.

    I think this is wrong if only because by the time you have a child, let alone an adult the situation has changed. You love them specifically rather than the idea of them and have a history with them specifically that can’t be transferred to a theoretical superior child. In considering abandoning that history the cost benifit changes.

    Another problem seems to be that people assume that whatever consequences one decides to apply to this assignment of ‘worth’ are necessarily desired as ends in themselves. Thus, people end up reasoning that if you would abort a disabled foetus then the abortion of disabled foetuses something that you find desirable.

    This seems to me to be clearly nonsense. I might feel (rightly or wrongly) that I wouldn’t be able to cope with a child with a particular disability, but I certainly wouldn’t judge somebody who found they could cope and were able to enjoy such a child. If anything it might make me regret my decision.

  161. Coobeastie said,

    December 11, 2008 at 7:44 pm

    Hmm, if I mention Foucault on a badscience thread is that a Godwin equivalent? Because part of this seems to be a disagreement on the use of language (ie construction of meanings and the power that they have in the world). The post on the use of ‘pity’ is interesting – who ‘owns’ the meaning of that word? (Think of debates about the N-word and ‘queer’ if you’re not sure what I’m talking about).

    What part of this comes to as well, if I’m going sociological, is the power-construct. Nameless et al cannot imagine that people who do not have the ability-priviledge that they do can have happiness/fulfillment in their lives. Therefore, it is acceptable for them to be aborted for the simple reason that they do not fit the social construct of a ‘person’ (or a good person? A worthy person?). A social construct that’s negotiated here by individuals who state clearly that they can’t imagine being disabled, but feel that their power-status allows them to throw down dictats to those who have had similar/relevant experiences.

    @Nameless, “this lot all have neurological problems which I suppose affect the way they perceive things”
    Wow, I’d read that one in Joanna Russ’ ‘How To Supress Women’s Writing’, but I’d never had it used on me. Thank you for trying to undermine my perspective, but I’m damn sure it’s at least as valid as yours.

  162. tom1 said,

    December 11, 2008 at 10:57 pm

    Coobeastie,

    One interesting thing about the pity debate was that the word was originally used by Gonzo Girl to describe feelings that she attributed to other posters (possibly The Nameless).

    There is definately a discussion to be had on different interpretations of the word. I don’t think people have always helped themselves on this thread with their choice of words. Having said that, it is at a level beyond individual words that I think the misunderstanding/disagreement is coming in. People are reading large sections of text and getting totally different things from it.

    I for one think Gonzo Girl and others have genuine points to make that I and others are failing to understand. I also think Gonzo Girl and others are repeatedly failing to see the intended meaning of other peoples posts.

    Coobeastie, I wonder if you could point me in the direction of the post(s) by The Nameless that led you to conclude:

    “Nameless et al cannot imagine that people who do not have the ability-priviledge that they do can have happiness/fulfillment in their lives.”

    I’ll happily reread the thread, but right now I can’t recall anything like that.

    To be continued….

  163. Coobeastie said,

    December 11, 2008 at 11:20 pm

    Post 62, “I *do* tend to assume that, other things being equal, I’ve had a better life”

    I was writing the post from memory of the other comments, and think on re-reading I’ve over-extrapolated. A bit of journalistic mis-representation on my part, sorry :)

    I’m going to bow out of this – it’s a really interesting debate, but I’m up to my eyeballs in work at the moment!

  164. The Nameless said,

    December 12, 2008 at 4:09 am

    @Coobeastie. As for “owning” words: no, you do not get to re-define common words and then attack people for using them the normal way.

    Re: my comment about neurological disorders and perspectives: sorry if that came across as an insult… but I said that *because* everything I say comes across as an an insult… the image of a distorting mirror came into my head.

    I was trying to make allowances for you. Several of you have said you have neurological impairments… it’s not unreasonable to guess that they might be responsible– also for your apparent lack of interest in the way other people see things. That said, I’ve had plenty of experience debating with people who do exactly the same thing, with no such excuse.

    “Thank you for trying to undermine my perspective, but I’m damn sure it’s at least as valid as yours.”

    Actually, I think the problem all along is that your “side” has come in with the conviction that your perspective is the *only* valid one.

  165. The Nameless said,

    December 12, 2008 at 4:12 am

    Anyway– we are clearly *never* going to agree, so can we consider this closed?

  166. tom1 said,

    December 12, 2008 at 10:10 am

    @Coobeastie. I appreciate your reply. One of the frustrations I’ve had has been interpretations of this thread (not a million miles away from yours) where people haven’t been so swift to come forward with quotes.

    @The Nameless. Is this thread finally dead, or will it rise again…?

  167. The Nameless said,

    December 12, 2008 at 2:56 pm

    @tom1. I *hope* it’s dead. I’m tired…

  168. MedsVsTherapy said,

    December 18, 2008 at 11:30 pm

    Wow I got a lot of response! BTW: yes, I am against abortion regardless of the convoluted defenses for supporting abortion (Iam still parsing this: “You love them specifically rather than the idea of them and have a history with them specifically that can’t be transferred to a theoretical superior child. In considering abandoning that history the cost benifit changes.”).

  169. MedsVsTherapy said,

    December 22, 2008 at 2:53 pm

    tom1..
    I get it. food for thought. hopefully my comments are food for thought for you.

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