Talk:Down syndrome/Archive 1

Time and again some portions of my articles have been removed as "copyrighted"!!! Please do not do that again: I indeed pasted it ready-made; however, I pasted it from my own article (http://www.supermemo.com/articles/genius.htm). Please feel free to expand upon this text, but I would appreciate if you would leave this note intact. One reason is that I would not like anyone ever think that I steal material from Wikipedia to write my own articles! I just thought this would be a nice contribution. -- Piotr Wozniak


 * It's Down Syndrome, after John Langdon Haydon Down, apparently.


 * Yup. And my dictionaries say "Down's", no mention of US alternative. You're right about " This article needs some attention paid to discriminatory language as well." too! -- Tarquin


 * I think the modern US use is "Down syndrome" if Down the physician discovered it, and "Down's syndrome" if Down the patient had it.


 * I did a quick google search for both Down Syndrome and Down's syndrome- seems the former are US sites, the latter UK. I've always said 'down's'. quercus robur


 * Does that mean that we should put an appostrophe 's' through every occurence of the word 'down' in this article or should we disambiguate between US & UK usage of the term? I'm off to get a cup of tea while a decision is reached.... quercus robur 16:21 Dec 29, 2002 (UTC)


 * Ah well that's that sorted- thanks 213.253.39.116 ! quercus robur

I'd move the article to Down syndrome, instead. Reasons:
 * the article is internally consistent already with the US usage
 * 200m US citizens outnumber 60m UK citizens

Population size is no reason. What do all the other anglophones of the world use? Quite a lot of .gov sites use "Down's" -- Tarquin 16:35 Dec 29, 2002 (UTC)

A Google search shows 307,000 hits on "Down syndrome" and 80,00 for "Down's syndrome". The NADS at http://www.nads.org/ calls itself the National DOWN Syndrome Society.
 * 307,000 hits on Google is not what all the other anglophones in the world use -- I'm sure that 307,000 is mostly Americans. In Australia we call it "Down's syndrome". What do Canada, New Zealand, etc, do? Since this article was originally filed under "Down's syndrome", lets just leave it under that, rather than have endless arguments between American English-speakers and British English-speakers over what spellings to use? In an argument about mere population size, the US will always win -- mere population size is a recipe for US linguistic and cultural imperialism... -- An.
 * I am an American and I have always thought it was Down's so maybe there is regional variation in use in the US as well. Rmhermen 15:25 Apr 11, 2003 (UTC)
 * I'm an Australian, and I say that whatever makes people understand what one is talking about should be fine. I can argue the semantics of the genitive by superposition of nouns versus the genitive by head clitic until the cows come home, but in practice, I have only ever heard "Down's syndrome". (That doesn't mean that I won't accept the other, though.) By the way, was it a horse head or a horse's head that was found in the bed in The Godfather?? :) The difference is slim to none; they both refer to the head of a horse. The difference is merely semantics, and I tend to think it clouds the fact that the disorder needs to be investigated, not the name.


 * I couldn't resist going off and trying to find more definitive sources than Google searches. All of the printed dictionaries and medical books (not many of the latter) that I have list it as Down's. An online search of general and medical dictionaries show that most English-language dictionaries list *both* (not distinguishing as American vs. British); most medical dictionaries include only Down Syndrome, although some list Down's. But if you track back from there to published medical papers and such, most appear to use Down's.  I'm thinking that there has been a recent change in the accepted terminology? But I couldn't anywhere find any information about whether or when it changed.  Just FYI.  Elf | Talk 22:04, 16 Apr 2004 (UTC)


 * I used to work in the MR/DD field, and we were very clear on the point that it was "Down Syndrome", not "Down's Syndrome". Dr. Down never had it. Besides, think of this.  We almost always pronounce it "Down Syndrome", almost never "Down's Syndrome". jaknouse 16:04, 20 Apr 2004 (UTC)


 * That's very nice, but the rest of the world uses "Downs Syndrome", "Down's Syndrome" and "Down Syndrome" interchangably, and those who used "Down's Syndrome" pronounce it so. The possessive has nothing to do with "having" it: it's folk etymology to suggest that the distinction between eponyms with and without possessives reflects whether they are named for the patient who had it or the doctor who described it. -- Nunh-huh 19:41, 20 Apr 2004 (UTC)


 * Yeah, right. I've heard a LOT of people say it, and it almost invariably comes out "Down Syndrome" when they say it.  People are as a rule lazy speakers.  Probably the only people who PRONOUNCE it "Down's Syndrome" are the people who would make a point of pronouncing all the "t"'s in something like "I was sitting there knitting."  In any case, perhaps we need a few eponymy rules. Let's institute one. jaknouse 00:15, 21 Apr 2004 (UTC)


 * Yes, some people are lazy speakers. Some people are lazy listeners. Wikipedia should report on how people use the terms. We don't have the power to dictate how people speak. We shouldn't pretend one of these is "right" and the others "wrong". - Nunh-huh 01:46, 21 Apr 2004 (UTC)


 * This is my first edit, so my apologies if I make mistakes. I did try the sandbox first. I found this particular discussion interesting, but I'm not sure if it's appropriate to add comments since the discussion seems to have been completed several months ago. I have a 7 year old son with Down syndrome. One of my preferred websites for information is www.ds-health.com. This site has an article concerning the evolution of the name from "mongolism" to the use of Down syndrome in the United States. According to that article, the term "mongolism" ceased being used in 1965 when a delegation from Mongolia informally requested it be dropped because they found it objectionable. I find that interesting because parents today find it exceedingly objectionable. Also, according to this article, the use of "'s" from all diseases and conditions was dropped by the US National Institute of Health, not just for Down syndrome. Attempting to determine a standard, they decided in 1974 that it was inappropriate because the author neither had nor owned the disease or condition. Personally, I think that makes more sense; but wouldn't want to force American English on anyone. But I did want to clarify where it came from and that it has nothing to do with "lazy" speakers or American linquistical imperialism. I did not verify this information with the US National Institute of Health or the World Health Organization. zasmom

''I feel very uncomfortable with the following quoted line; "People with Down syndrome have (until now) never become great scientists, novelists, politicians, etc. " - This is probably true of 99% of the population, but is not generally attributed to a genetic disorder. This line needs serious NPOV re-editing. quercus robur 01:53 Dec 30, 2002 (UTC)''


 * Seconded. The UK site says "Each year we organise an ANNUAL ACHIEVEMENT AWARD to show the public just how much can be achieved by adults with Down's syndrome." (http://www.dsa-uk.com/Literature/Downs_questions.htm) -- maybe someone should contact them and ask for cases we can cite?
 * I'm not happy about our use of the term "mental retardation" -- "a person has a learning difficulty or learning disability is now considered to be more acceptable" (same page) -- Tarquin 12:26 Dec 30, 2002 (UTC)

I've moved the very affirmative introductory passage to its own section. There are probably places where it would be an appropriate introduction, but an NPOV encyclopedia article is not one of them. You need to define the subject before discussing it. I also question one sentence in it: "The medicalisation of Downs Syndrome ..[was] linked to early twentieth century racial and eugenic theory, and [is] now regarded by most western governments and social care agencies as highly damaging to the social status and human rights of people with DS."

I'm not sure how a medical syndrome can become "medicalized" and I rather doubt that it became so on the basis of 20th century racial theories. Medical advances in the conditions associated with Down's are responsible for the increase in the life expectancies of children with Down's, and it is a bit unreasonable to assert that most western goverments would see such a life-extension as damaging to their social status or to their rights. Rather to the contrary. - Nunh-huh 02:45, 16 Apr 2004 (UTC)

I think it's referring to the medical model of disability -- as opposed to the social model. I think the passage you moved needs a rewrite for NPOV, and a more encyclopedic tone. -- Tarquin 19:04, 16 Apr 2004 (UTC)


 * I agree, but would prefer if someone else would give it a try, as I don't want to go too far in the other direction. Maybe I'll put it on cleanup! - Nunh-huh 21:23, 16 Apr 2004 (UTC)

Medical versus social models
Stop mucking about - this is extremely serious!

This page gets read by many pregnant women who have been screened as carrying a DS fetus, and by their partners and friends, and who are looking for information, often in a real state of panic. The negative medical tone of the article is wholly inappropriate and also plain wrong, and is likely to lead to a far higher take up of termination of pregnancy. Yes, words can really kill - this isnt a game you know.The whole emphasis these days is on early detection and "treatment" - you guessed it, abortion. The parents are put under huge pressure to abort because doctors are fearful and ignorant of the condition (they only see DS kids with medical problems, not the ones who dont have any, so their view is inevitably jaundiced)

That kid with the screwdriver is my son, and I dont see why my expertise and opinion on the pre-eminence of the social model and my insistence on people - first language should be sacrificed on the discredited altar of eugenics. By all means tidy up any errors of fact and wikify it all you like, but dont stick it at the bottom as a footnote please, that gives a wholly negative impression.

For many years, parents of kids with DS have been trying to clean up all these awful textbooks and dictionary references and put the record straight, and its about time that Wikipedia started to wise up to the real experts.

I've moved the heading back where it belongs, and request mediation - what are the qualifications of those who are trying to assert their superior wisdom in this dispute? Excalibur


 * This is an encyclopedia, and as such, we must begin with a plain definition of what the topic in question actually is. So I would say we need to begin with at least 1 paragraph of basic medical definition, and also its discovery and origin of the name. After that, perhaps we can have a section on social aspects, and leave the very technical stuff on chromosomes to a section further down. We should also mention the pressure the medical establishment has (and still does) put upon potential parents finding their foetus has Down's. Does all this sound reasonable to you? (BTW, you can sign your user name after comments with three tildes). We also need a page on the social model of disability -- I wrote a little about it on the page disability, but I think we needed a deddicated article too -- perhaps you'd like to help? -- Tarquin 08:16, 17 Apr 2004 (UTC)

Thanks Tarquin, seems a fair enough compromise. The social model of disability is a pretty tough topic, and I'll give it some thought. In the meantime, I have written a short piece on institutionalisation just to get my hand in, and I'd welcome anyone having an edit - I'm new at this game, having never written an encyclopaedia entry B4, but I'm learning fast. Excalibur

While I don't myself disagree with it, the sentence "People with Down syndrome have the same human rights, emotions, dignity and value as any other human being" is POV.

Also, since emotions can be affected by neurological abnormalities (e.g., as in autism), I'd like to see that back up by medical (or at least anecdotal) sources. Human rights, of course, are a mater of much philosophic debate and legislation; perhaps we'd be better served by a survey of the human rights most societies accord to persons with Down's -- do most western democracies grant the franchise to persons with Down's?.

"Dignity" and "value", of course are entirely POV, and this part of the phrase belongs in an advocacy piece, not Wikipedia. orthogonal 13:18, 23 May 2004 (UTC)

___

Hi, I have just added a few informations on schooling for children with DS and on the statistical information available on abortions of children with DS. Most of it goes for Europe, so if you have any updates for the US, please add them. I was not sure about the extent of citing sources wikipedia requires, I can add relevant sources for everything I wrote. While I can see Excalibur's point as a mother, I have changed the lines on the social model a bit since the part on realization of personal potential - in my opinion - clouded the actual difficulties the disability still constitutes. I have been a teacher for children with Down Syndrome (and other mental disabilities) for seven years and I have tried to give a summary of the current social model / integration discussion. Although I am all against discrimination, the role theory and social model vs. medical model discussion really blurs the fact that the disability is not just something attributed to a child by society, but a condition that requires even more qualified schooling and more thoughtful parenting than the absence of DS. The over-emphasis of the social model has led to extreme integration projects (in Germany, at least) that proved not at all beneficial for the children with DS because they could not cope with the normal schools' curriculums and were rather chaperoned than befriended by the non-disabled children.

I generally agree with Orthogonal on "dignity" and "value" being POV, and I don't think human rights' claims usually belong in an encyclopedia. However, it hurts none, and one must be quite careful not to inadvertedly give a justification for eugenics by the way one gives the medical information. In some German hospitals we therefore have a special pedagogic service, providing parents of a disabled child with accurate information on disabilities and updating the sometimes astonishingly unscientific information provided by the medical professions.

Miriam_Stiehler 13:05 29.9.2004

Picture
I'm not saying the picture on the article is worng, I jsut think maybe it shoud be more front-on, as it were, showing the facial differences of a Down's person. Anyone else?

Selphie 12:17, 10 Dec 2004 (UTC) **


 * I'm inclined to agree that the picture doesn't illustrate very well the facial characteristics we expect to see. --bodnotbod 02:17, Jan 27, 2005 (UTC)

Judith Scott
I'm currently working on the Judith Scott article, and trying to get it wiki-linked from appropriate pages. She is an enormously popular outsider artist with Down's syndrome, and I feel that as such it might be appropriate to somehow link her from this page, but I don't know how best to incorporate her. I didn't want to add a "famous people with Down's Syndrome" list when she was the only one I knew of, so I'm leaving it up to those of you who work on this page; if you can think of a good spot for her, it would be much appreciated! Thanks! --Philthecow 19:28, Jan 26, 2005 (UTC)


 * perhaps mention it in the section on the prospects in adulthood for people with Down's? -- Tarquin 09:40, 10 Feb 2005 (UTC)

Haircut
Why do so many people with Down syndrome have the same haircut? This article doesn't seem to address it. In Canada at least, a person with Down syndrome can be identified as easily by their bowl-style haircut as by their facial features and behaviour. silsor 04:21, Feb 9, 2005 (UTC)


 * Children with Down’s Syndrome often have straight, soft hair. As children they may have an extra fold of skin over the back of the neck and as adults, short broad necks. I think the haircut is a matter of carer's choice (they may be too restless for more complicated haircuts); I know curly-haired Down children. JFW |  T@lk  23:40, 10 Feb 2005 (UTC)