Trisomy 21, General Information

September 16, 2008 7:19 PM

Regarding this post and this MeTa thread, a few facts for you.

Zeroth - no discussion herein about abortion, morality, or costs. The goal of this post is help our dear readers shed some ignorance.

First, to satisfy the language pedant in me:
In the United States, it's Down syndrome (capital D, lowercase s, no possessive).
In the United Kingdom, it's Down's syndrome.

Second, to satisfy the Political Correctroid in me:
Please use People First Language when talking about a person or persons with Down syndrome, I and other parents of children with Down syndrome find it inconsiderate at best.

Third, to satisfy the scholar in me (in no particular order):

The longer life expectancy in people with Down syndrome is not recent - John Langdon Down demonstrated it by actually caring for his patients. In the US, up until the 1970's (give or take) doctors coerced parents into institutionalizing their babies with Down syndrome, inducing short, lonely, unproductive lives.

Are couples more or less likely to stay together?
Depends who you ask. Some studies say higher divorce rate (D.A.D.S. quotes 90%), some lower. Inconclusive.

How do any other existing children react? I mean, isn't it hard to give the other children the attention they deserve?
Depends on the family. I've heard Brian Skotko quote a study that shows that families with a child with Down syndrome are happier in general than other similar families.

That said, I can't imagine being pregnant and being forced to carry it to term.
Many parents are being coerced to abort by doctors - similarly to how parents were coerced to institutionalize post birth. It's similar to being forced to carry to term - just more insidious.

Many people with handicaps will need someone to care for them for life.
Literally true, but it doesn't apply here. With proper early care, most people with Down syndrome will be productive and nearly or completely self-sufficient. This type of program is called Early Intervention is has been shown to be cost effective. More on Early Intervention.

I believe all those with Down Syndrome would choose to have never existed over the diminished, dependent life they live, had they capacity to comprehend it.
This is laughably ignorant, and probably a troll.

Trisomy 21 is not a hereditary disorder, it's a mutation caused by maternal age.
False. Trisomy 21 is a genetic disorder that does not have a known cause, but is correlated with maternal age. Statistically most fetuses with Trisomy 21 are to the young (Brian Skotko)

what are the social benefits of having folks with Down syndrome around?
In school-age children, it has been shown that a full-inclusion program is beneficial to students with and without disabilities.

Fourth, to satisfy the curiosity in you -
I am plinth. I am the father of a daughter with Down syndrome. Apparently I post frequently about it and was intending post in two weeks, as October is National Down Syndrome Awareness Month, but the content of the thread in the blue demonstrated a need for a little more awareness.

I won't whitewash my experience - it has been one of the most challenging and frustrating undertakings of my life. People who know me well reassured me that there are few, if any, people better suited to raising a child with a Down syndrome than Mrs. Plinth and I, but that doesn't make the process any less difficult. Still, we have learned a ton about what may come along with Down syndrome and what to do about, learned another language and in turn educated our those around us.

We didn't know ahead of time, and no, I won't answer the obvious what-if question.

In the first month of my daughter's life (3/4 of which were spent in the NICU), my best friend from college sent me an email wherein he said that he believes that the gene for fundamental human kindness is on the 21st chromosome and that those with T21 get an extra helping. I hold this close to my heart because even though a positive stereotype is still a stereotype, I find it true with my daughter, and am thrilled to see how it unfolds in her relationship with her younger brother.

Lastly, if you have specific questions pertaining to my experiences that outside of the zeroth point, please ask and I will endeavor to answer.

posted by plinth to MetaFilter-Related at 7:19 PM (151 comments total)

Thanks plinth. You and your family have been in my thoughts a lot the past few weeks.
posted by jessamyn (staff) at 7:25 PM on September 16, 2008 [3 favorites]

Good info, but I wonder why you haven't included it in either the original thread or the ongoing MeTa that you link to, which would certainly more effectively target the audience that I assume you want to see this.
posted by googly at 7:27 PM on September 16, 2008

Wouldn't this be better served in the existing thread?
posted by John Kenneth Fisher at 7:31 PM on September 16, 2008

Good info, but I wonder why you haven't included it in either the original thread or the ongoing MeTa that you link to, which would certainly more effectively target the audience that I assume you want to see this.

It would be a shame to dignify that thread with a response as well thought-out and *humane* as this. I mean, that thread is just horrible.
posted by KokuRyu at 7:32 PM on September 16, 2008 [12 favorites]

Thank you for posting this.
posted by bettafish at 7:33 PM on September 16, 2008

It would be a shame to dignify that thread with a response as well thought-out and *humane* as this. I mean, that thread is just horrible.

Not to comment on the content, but I think it's a bad precedent to be able to declare, (and man, do i not wish to insult Plinth here, but...) "MY reply is so important and special that it deserves its own entire thread, instead of going in one of the other TWO threads currently in motion on this topic."

It's a good comment, a good reply, a worthwhile view, and I'm glad it was shared... but a reply to existing threads is what it is. It should have gone in there.
posted by John Kenneth Fisher at 7:37 PM on September 16, 2008 [5 favorites]

The Down Syndrome threads were the first I ever removed from activity.

I posted the story of my aunt in Brian B's thread, but I'd like to mention here also that it wasn't just in the US that doctor's pressured families into institutionalizing their children with Down's. In my memories of my aunt she is always happy. Now, memories are fickle beasts, but I'd like to think that she was. It still must have been terrifying to have been removed from her parents at a young age like she was. I know it was horrible for my grandparents.

I wish you the best, plinth.
posted by Kattullus at 7:39 PM on September 16, 2008 [1 favorite]

The thing is, this reply is one of those beautiful rarities that is so important and special that it deserves its own thread instead of being buried in the noise. I would certainly not have seen it otherwise, and I've very glad I did. Good job, plinth.
posted by flabdablet at 7:40 PM on September 16, 2008 [1 favorite]

Very excellent post. I uppose this is as good a place as I'll find here to post this (I elected to not post it in 'that' thread, pearls before swine and all that). A NYT piece by Harriet McBryde Johnson, who died earlier this year. It's a few years old, but it almost haunts me.
"At this stage of my life, he says, I am a person. However, as an infant, I wasn't. I, like all humans, was born without self-awareness. And eventually, assuming my brain finally gets so fried that I fall into that wonderland where self and other and present and past and future blur into one boundless, formless all or nothing, then I'll lose my personhood and therefore my right to life. Then, he says, my family and doctors might put me out of my misery, or out of my bliss or oblivion, and no one count it murder."
posted by dawson at 7:56 PM on September 16, 2008 [3 favorites]

Harriet McBryde Johnson obit...
posted by dawson at 7:58 PM on September 16, 2008

Look, there is no way I am treading back into EITHER of those original threads, so if this was buried in there I never would have had the benefit of plinth's insight. In that regard, I am glad this was done this way.
posted by spicynuts at 8:00 PM on September 16, 2008 [8 favorites]

nice work.

That post was pointless drivel.
posted by docpops at 8:01 PM on September 16, 2008

Good post.

One complaint though: "People first" notation seems completely unwieldy and almost obsessively touchy-feely. Instead of being able to refer to "the blind," it would have us refer to "people who are without sight." On second glance, this point is brought up in the linked Wikipedia article, but I can't help but agree with the criticism. You have tall people and black people and skinny people, but when it's negative, it's "people with X," which only serves to reinforce the "otherness."
posted by explosion at 8:02 PM on September 16, 2008 [15 favorites]

Someone else posted that article in the fpp, dawson. A good thing, I think; as troubling as the thread and discussion are, on a number of levels, it can only help to bring deeply thoughtful writing into the mix.
posted by hippugeek at 8:07 PM on September 16, 2008

Thank you Plinth, I learned more than I knew I needed to learn.
posted by Shutter at 8:15 PM on September 16, 2008

Thanks plinth. And thanks for posting it here. Like others, I find it too frustrating to mess with the Blue thread any more. Doing so challenges my faith in humanity too much. Your story is too valuable and full and dignity to be thrown to the dogs.
posted by Fuzzy Skinner at 8:24 PM on September 16, 2008

Thanks, plinth. What everyone else has said about the fpp and the other meTa go for me, too.
posted by rtha at 8:32 PM on September 16, 2008

Someone else posted that article in the fpp, dawson.
Cool. I'm glad it was posted. I figured I'd simply be called the 'resident concern troll' again, but it's nice someone had the balls to dissent.
posted by dawson at 8:35 PM on September 16, 2008

Goes for me. Goes.
posted by rtha at 8:37 PM on September 16, 2008

The thing is, this reply is one of those beautiful rarities that is so important and special that it deserves its own thread instead of being buried in the noise.

This is, arguably, exactly what the sidebar is for. A good comment, but a bit out of place as is on MetaTalk, especially given that it's directly related to several other recent threads and not really a question about policy.

Not that I want to get in the way of plinth's moral high ground.
posted by dhammond at 8:41 PM on September 16, 2008

Yeah, this is a really good post and sidebar material, but MeTa isn't really for this.
posted by anifinder at 8:50 PM on September 16, 2008

Very nice and incredibly informative post. I think it's okay that this is posted here, given the quality of the other threads... but hopefully others will be discerning and know when bringing something like this to the gray is and isn't appropriate (as is always the case with MetaTalk.)
posted by Solon and Thanks at 8:57 PM on September 16, 2008

MeTa isn't really for this.

I think it's fine here. Maybe it should be in the original thread, but putting it here isn't hurting anything.
posted by dw at 9:00 PM on September 16, 2008

I don't exactly understand why this is here, but since one of my points got called "false" I have to ask:
I said: Trisomy 21 is not a hereditary disorder, it's a mutation caused by maternal age.

False. Trisomy 21 is a genetic disorder that does not have a known cause, but is correlated with maternal age. Statistically most fetuses with Trisomy 21 are to the young (Brian Skotko)

I admit the second part of what I said is inaccurate -- I know it's only a correlation with maternal age, since teenagers can have a kid with Down Syndrome, it was just sloppy phrasing. My apologies.

The first part though? Not false by any information I've seen or can find. People with Down Syndrome in their families are not more likely to have a child with Down Syndrome, correct? Therefore, it's safe to assume it is not hereditary.

I don't have an agenda on this issue (really), was just making a point in the thread since people were tossing around the word eugenics.
posted by malphigian at 9:01 PM on September 16, 2008

And thanks plinth. I appreciate your good, decent, and honest comments here. It's clear you love your daughter, even if raising her is a pain in the ass at times. But then, raising any child is a pain in the ass at times. Like my daughter who WILL NOT GO TO BED.
posted by dw at 9:07 PM on September 16, 2008

You are confusing "genetic" with "hereditary," malphigian. As I mentioned in one of the threads Down's is generally not inherited but, in some rare cases, can be. Here's a good overview of Down Syndrome.
posted by Kattullus at 9:26 PM on September 16, 2008

Trisomy 21 is not a hereditary disorder, it's a mutation caused by maternal age.
False. Trisomy 21 is a genetic disorder that does not have a known cause, but is correlated with maternal age. Statistically most fetuses with Trisomy 21 are to the young (Brian Skotko)

Expanding: Trisomy 21 is by-and-large non-hereditary, arising as a novel genetic error in the gametes. It is hereditary in the case of those with Trisomy having children, though the vast majority of the men and roughly half of the women are infertile. The children will have a good chance, but not a certainty, of inheriting the trisomy. Also, without getting into the genetic details (start from Wikipedia if you want) there are some "Down Syndrome carriers" who are unaffected but whose children will have a chance of inheriting Down Syndrome. Only a few percent of Down Syndrome cases are caused in this fashion, though.

It clearly correlates with maternal age and most of the novel mutations come from the egg, but they can also come from the sperm either as a novel mutation or in the hereditary fashions mentioned above. I saw much conflicting data on this but there may also be a correlation with paternal age (much smaller than that for maternal age) or with joint maternal-paternal age.
posted by TheOnlyCoolTim at 9:41 PM on September 16, 2008 [1 favorite]

It seems I'm not 'hip to the convention' as per usual, if this doesn't belong in MeTa, where does it belong? We can now post directly to the sidebar? You want it buried in the original post where we would never see it? Seems that Jess had no problem with this post, so why all the condescending sneers? Is this your website? You made these rules? I didn't really know there were rules so much in MeTa. I can't help but think that some have been...well, flummoxed, and want to censor what they can't reject out of hand. OMG, you can't say that here!!!!.
Or perhaps my irony meter is busted.
posted by dawson at 9:51 PM on September 16, 2008 [2 favorites]

The first comment in this thread was made by one of the moderators. She didn't complain, and she didn't close the thread.

That definitively settles the question of whether this is a proper use of MeTa. Yes, in this particular specific case, it is. Further discussion of the question is at best academic, and at worst a gross distraction from what this thread should be about: that the other two threads became monstrous.

So what is the rule? I refer you to baseball:

Rule #1: the Umpire is always right.
Rule #2: If the Umpire is wrong, see rule #1.

The rule here is, the mods are always right. There are no other rules, only guidelines which the moderators try to follow, but occasionally permit exceptions to without establishing precedent.
posted by Class Goat at 10:22 PM on September 16, 2008 [1 favorite]

This is fantactic, plinth, and thank you for doing this.

As far as I'm concerned this is a perfect use of MeTa. Warmly explaining the facts so that we can all act with a little more civility, respect and knowledge? I think it needed it's own post, considering that the two separate threads were more or less both poisoned wells at this point.

Now, can somebody (say... Malor, maybe?) please do a similar post explaining the financial crisis to those of us not versed in the jargon and mechanics of financial products? (pretty please?)
posted by Navelgazer at 10:31 PM on September 16, 2008

The FPP in question - or at least some of the ignorant people and comments in it - isn't worthy of this thoughtful and informed post. Tossing it in there would be like putting some sort of cosmetic on a delicious quadruped.

Cheers and all the best, plinth. Thank you.

And thanks for the humbling reminder of 'People First Language'.
posted by Alvy Ampersand at 10:37 PM on September 16, 2008

I'm glad plinth posted this information here too. I wasn't planning to go back to either of the other threads.
posted by cybercoitus interruptus at 11:16 PM on September 16, 2008

I'm glad plinth posted this information here too. I wasn't planning to go back to either of the other threads.
posted by UbuRoivas at 11:36 PM on September 16, 2008

This is a really good post, plinth.

There is one thing you said, though, that bothered me:

I believe all those with Down Syndrome would choose to have never existed over the diminished, dependent life they live, had they capacity to comprehend it.

This is laughably ignorant, and probably a troll.

I'm not one of the people who said that, nor would I, but I do know why a person would honestly believe that. You have to understand that some people have their identity so completely wrapped up in their intellect (or their delusions thereof) that to lose it would, in their viewpoint, constitute a lessening of the self as a whole.

And while I would not make the statement above, because I believe that everybody places different weight on different aspects of life, I do know that for *me* personally, if I had to choose whether to be born with Down's Syndrome or to not be born, I would probably choose the latter. As part of my value system, I have *begged* each of my family members, quietly and individually, to pull the plug if an injury should ever leave me brain damaged.

I do not believe this is an opinion shared by most people. I am not even sure that it is, from an outside perspective, reasonable. I think most people would very much prefer to live, and that if most people with Down's Syndrome had the ability to assess their situation they would thank their families for the massive expenditures of time and effort they receive.

But I think I understand why someone would say that, and I'm not sure they're being ignorant or trolling - I think maybe they're very short-sighted, as I admit to probably being, but it's important to me that people acknowledge the possibility of wildly differing, good faith viewpoints on this topic.

I'm sorry if this upsets anyone.
posted by Ryvar at 11:42 PM on September 16, 2008 [3 favorites]

Yeah, this is a really good post and sidebar material, but MeTa isn't really for this.

If someone can throw a hissy fit in MetaTalk over some vaguely intuited semi-insult, then I think it's completely appropriate to share a truly justified reaction to a poorly put together post about something that is a fact of their lives. In what universe would this be inappropriate here?

Your comment is not only mean spirited but WRONG!!
posted by The Light Fantastic at 12:57 AM on September 17, 2008

MetaTalk is specifically designed for "hissy fits", i.e., questions and debates about site etiquette and policy.

So two threads, both still open and on this exact topic, are not "good enough" because plinth is too humane or righteous or something?

I have some very important opinions about Sarah Palin but you know what a cesspool the open threads are.

And please, it is "people who are challenged by assholism", not "assholes". Thanks.
posted by Meatbomb at 2:43 AM on September 17, 2008 [1 favorite]

Nice post, but as a doctor I find this vaguely offensive, and utterly without any basis in fact:

Many parents are being coerced to abort by doctors

From my personal experience as a trainee OBGYN, no-one would ever "coerce" anyone to have an abortion. Many doctors do probably think fetuses with Down's should be aborted, and sure, many of them are completely inured and desensitised to it, but no-one likes doing it, and everyone recognises that it's a hard choice. If as a patient you choose to have an abortion, it might be easy to blame the doctors for your regrets, but you gave informed consent for it, just like every other procedure.
posted by roofus at 4:01 AM on September 17, 2008 [1 favorite]

I learned something here, both about Down syndrome (US American here) and about human compassion, both of which I would have glossed over in the original thread, as I had quite gruffly demurred from reading it, based on the invective at the outset.

I have 3 children-not-with-any-syndrome, but teenage-hood is a syndrome in itself, and patient, tolerant, constructive child-rearing is always a challenge, and the challenge is always its own reward.
posted by Devils Rancher at 4:02 AM on September 17, 2008

So two threads, both still open and on this exact topic, are not "good enough" because plinth is too humane or righteous or something?

Naa, the mods tend to take a lot of stuff on a case by case basis. Evidently the other two threads were monstrous and/or had other problems (don't know, didn't read them), so making another post about it here was deemed ok, especially since it was designed to clear up some misconceptions in those threads, while not dealing with other issues that cropped up. No, it's not a beautifully elegant solution but then neither are g-strings and western society has survived.

Also, plinth posted a link to the this thread in the Metafilter post, so there.
posted by Brandon Blatcher at 4:09 AM on September 17, 2008

I'd also like to register my appreciation for this post, especially as someone who works with people with Down's Syndrome.
posted by Marisa Stole the Precious Thing at 4:09 AM on September 17, 2008

Very moving, much appreciated, powerful stuff.

But "doctors *coerce* parents to abort" a pregnancy if Down syndrome is detected?

Coerce?

I have a problem with that allegation.
posted by fourcheesemac at 4:37 AM on September 17, 2008

coerce:
1 : to restrain or dominate by force
2 : to compel to an act or choice
3 : to achieve by force or threat

How do you force someone to have an abortion in the US or Europe? I should think that is quite illegal.
posted by fourcheesemac at 4:41 AM on September 17, 2008

Excellent post, plinth, thank you.

>That said, I can't imagine being pregnant and being forced to carry it to term.
Many parents are being coerced to abort by doctors - similarly to how parents were coerced to institutionalize post birth. It's similar to being forced to carry to term - just more insidious.

Anecdotally I find that to be true. I'm also concerned about the accuracy of prenatal testing - of the three families I know personally, one couple resisted all pressure to abort a foetus with "multiple birth defects". That foetus is now a 5'11" strapping, rugby-playing 15 year old on his way to university to study linguistics; the second couple have a beautiful Down's daughter, adored by her family and the village in which they live while the third chose to terminate.
posted by ceri richard at 4:58 AM on September 17, 2008

Intimidation and badgering are often held to be coercive, at least in common usage.
posted by Skorgu at 4:59 AM on September 17, 2008

fourcheesemac, did you read definition2 that you posted? I know this is occuring because friends of mine have dealt with it. Even after explaining to their doctors multiple times that abortion is off the table for them, the doctors have persisted. I believe at the very least that is compelling to an act or choice.
posted by genefinder at 5:10 AM on September 17, 2008

fourcheesemac: Coerce? I have a problem with that allegation.

I don't want to give specific details because of family privacy but I have witnessed a consultant obstetrician repeatedly "firmly request" a couple to abort because it was believed that the foetus had multiple birth defects. They were requested to attend weekly appointments during which the health of the expectant mother was ignored, the sole purpose appeared to be to "guilt" them into a termination. On other days the team midwife would wait outside the house until the husband had gone to work in order to speak to the wife alone, often reducing her to tears.

Coercion, intimidation, badgering? Most definitely.
posted by ceri richard at 5:11 AM on September 17, 2008

Yeah, the problem for me is that "coerce" may include all of the above, but is backed by the power of force in common usage. It's a hot button allegation, but obviously this is an emotionally loaded subject and I'm not going to get into a battle of anecdotes. I don't have a dog in the fight, truly. But I don't buy that doctors can force anyone to do something they don't like, no matter what they say. I'm sure there are intimidating docs (hell, my doc intimidates me).

Anyway, like I said, this is a valuable post and an important subject about which people need more knowledge. I just think it's a bit much to cast it as a battle between parents and medicine. Or at least balance that by considering how much medicine has done *for* people with DS and their parents.
posted by fourcheesemac at 5:52 AM on September 17, 2008

One complaint though: "People first" notation seems completely unwieldy and almost obsessively touchy-feely.

I disagree. In third grade, we had a class called "Understanding Handicaps," and the curriculum included speakers who had various disabilities that would come and talk to us. Most of them made this point. A person who is blind. A person who uses a wheelchair, etc. Rather than being overly PC or unwieldy, I always thought of it as following Miss Manners' rule--address people how they want to be addressed, regardless of what you feel is proper (or easier for you). E.g. if a woman married to Tom Jones wants to be called Mrs. Jane Jones rather than Mrs. Tom Jones, call her Mrs. Jane Jones. I can completely see how saying "Down's kids" might feel bad to people.

Another data point. I completely believe that some OBs would encourage or pressure a couple to abort a fetus with a birth defect, including a fetus with Down Syndrome. My father is a clinical geneticist and was a genetic counselor (the doc to whom an OB might send a couple with high risks for birth defects). He definitely would never pressure a family either way. Some of his favorite patients have been babies and kids with Down Syndrome. I actually do not even know his personal view on abortion--he won't tell me--but he is a kind and understanding person and physician that presents all options and works with parents. He's had couples decide both ways on a variety of conditions. He did tell me that one of his saddest experiences was when a couple he saw decided to have an elective abortion because the child would have had a cleft palate. They had been trying to have a baby for a while.
posted by Pax at 6:01 AM on September 17, 2008

Your comment is not only mean spirited but WRONG!!

Hmmm. "Yeah, this is a really good post and sidebar material..." Gosh, that IS mean-spirited!
posted by Chrysostom at 6:06 AM on September 17, 2008 [1 favorite]

But I don't buy that doctors can force anyone to do something they don't like, no matter what they say.

I don't know, many many people go into a situation like this with very little information and the balance of power to begin with in most doctor-patient relationships is very uneven. Can you not imagine that a doctor could present the information in such an overwhelmingly negative way that the couple truly felt they had no choice?

Imagine the doctor saying something along the lines of that your child will be miserable, sick, and an outcast. That the child will have X,Y,Z health problems, will cost society and you A,B,C dollars. That you are basically bad people if you bring this child into the world. If you have never personally known a person with Down Syndrome, what do you do? Unless the couple or mother is very informed, she takes the doc's word, no?
posted by Pax at 6:06 AM on September 17, 2008

I don't want to give specific details because of family privacy but I have witnessed a consultant obstetrician repeatedly "firmly request" a couple to abort because it was believed that the foetus had multiple birth defects. They were requested to attend weekly appointments during which the health of the expectant mother was ignored, the sole purpose appeared to be to "guilt" them into a termination. On other days the team midwife would wait outside the house until the husband had gone to work in order to speak to the wife alone, often reducing her to tears.

Coercion, intimidation, badgering? Most definitely.


I'm sure there are very intimidating doctors but these anecdotal horror-stories are way too subjective to be believable. If someone is anti-abortion then any suggestion that they abort will seem like coercion. If someone is pro-choice then any discussion of options that doesn't mention abortion means they're being forced to carry to term. If someone is carrying a fetus with birth defects then there's a lot of anger and fear that needs an outlet.

The bottom line is if you don't like what your healthcare provider has to say, then get a second opinion. Get a new doctor. Unless your friends lived in a remote rural area they had a choice of healthcare provider and did not have to continue to visit (and pay for) a provider who did not meet their needs.

Anyone who is raising a child with special needs will have to be a very strong advocate for that child when dealing with medical professionals, insurance companies, school boards, government bureaucracies, and other "experts" who "know better" than the parents.
posted by headnsouth at 6:07 AM on September 17, 2008

I should mention that my understanding of the Deaf community may be different with respect to People First speak. The Deaf people I have known (capitalization theirs) have used Deafness as an identifier in a much different way than other people with disabilities I have known.
posted by Pax at 6:17 AM on September 17, 2008

Thanks for posting this plinth. Good on you for having a habit of posting frequently about this - please keep that up. The community needs those who are closer to specific issues to speak as advocates for them. That's what makes us a community.

Ignore the bitching and moaning about whether this belongs in the other MeTa thread or not. Jessamyn ended that conversation politely in her first comment. I'm with her, and you and yours are in my prayers.
posted by allkindsoftime at 6:27 AM on September 17, 2008

I'm sure there are very intimidating doctors but these anecdotal horror-stories are way too subjective to be believable.
Really? None so blind, etc.

If someone is anti-abortion then any suggestion that they abort will seem like coercion.
I am emphatically not anti-abortion, nor are the couple in question. They simply felt very strongly that this child was meant to be born.

If someone is pro-choice then any discussion of options that doesn't mention abortion means they're being forced to carry to term. If someone is carrying a fetus with birth defects then there's a lot of anger and fear that needs an outlet.
The only anger was at the continual harrassment and the (as we now know) very incorrect diagnosis, not at the prospect of raising a special needs child.

The bottom line is if you don't like what your healthcare provider has to say, then get a second opinion. Get a new doctor. Unless your friends lived in a remote rural area they had a choice of healthcare provider and did not have to continue to visit (and pay for) a provider who did not meet their needs.
They are indeed in a very rural area and this is the UK where healthcare is provided by the NHS. Changing doctors was very difficult until about the 8th month of the pregnancy.

Anyone who is raising a child with special needs will have to be a very strong advocate for that child when dealing with medical professionals, insurance companies, school boards, government bureaucracies, and other "experts" who "know better" than the parents.
Yes I know, my parents now have close to 50 years of experience of dealing with that.
posted by ceri richard at 6:31 AM on September 17, 2008

Now, can somebody (say... Malor, maybe?) please do a similar post explaining the financial crisis to those of us not versed in the jargon and mechanics of financial products?

Mutant and Malor should do a podcast. It could be like Hannity and Colmes, only not stupid.
posted by adamdschneider at 6:41 AM on September 17, 2008 [2 favorites]

Thanks for this post, plinth. It's far more valuable than most of what gets posted to MeTa. Ignore the grousers.

So two threads, both still open and on this exact topic, are not "good enough" because plinth is too humane or righteous or something?

Meatbomb, you're not usually such a jerk; did your supply run out or something? Get in a better vibe and call me in the morning. We can't have our astral mod be a jerk.
posted by languagehat at 6:42 AM on September 17, 2008

Many parents are being coerced to abort by doctors - similarly to how parents were coerced to institutionalize post birth.

"coerce"?

either you repeatedly chose to use the verb "coerce" very, very badly, because you don't really know what it means, and that's OK so please disregard what follows here, or you revealed an amount of bad faith that makes everything else you said here suspect and invalid. all the respect due to the tragedy that struck your daughter, you and your family doesn't give you a license to lie.
posted by matteo at 6:45 AM on September 17, 2008 [1 favorite]

With regards to People First Language - the National Down Syndrome Congress favors Perople First language. This is preferred by the community as a whole. There is a press release on the front page (.doc format) which spells out many of the things I wrote and more.

Language is an abstraction for things, events, and ideas. Any representation of something in language will often carry connotation or nuance in addition to meaning and is also likely to change over time.

John Langdon Down favored the term "Mongoloid Idiot" where idiot is closer to the original literal meaning of an uneducated person, but this was cast into a severely negative light, hence the modern use of Down syndrome or Trisomy 21.

I appreciate the constructive comments here.
posted by plinth at 6:48 AM on September 17, 2008

I don't want to give specific details because of family privacy but I have witnessed a consultant obstetrician repeatedly "firmly request" a couple to abort because it was believed that the foetus had multiple birth defects. They were requested to attend weekly appointments during which the health of the expectant mother was ignored, the sole purpose appeared to be to "guilt" them into a termination. On other days the team midwife would wait outside the house until the husband had gone to work in order to speak to the wife alone, often reducing her to tears.

I assume that the family in question reported these individuals to the General Medical Council and the Nursing and Midwifery Council, so that they could be struck off/found unfit to practise? Because as you've described it, actions like that run totally counter to the ethical standards of modern medicine, and those carrying them out shouldn't be permitted to continue harming patients in the future.
posted by flashboy at 6:52 AM on September 17, 2008 [1 favorite]

Coercion? Perhaps the doctors felt strongly about a course of treatment. Consider other forms of coercion I've heard of:

* (X Religion) parents being coerced into accepting a blood transfusion for their child;
* Mother carrying six fetii being coerced into selective reduction;
* Parents coerced into providing chemotherapy over homeopathy.

I mean, I'm just picking things off the top of my head that I've seen in the local news in the last year. In examples one and three, the parents eventually went on trial for not listening to the coercion. In example two, the parents asked for a bunch of money from the public, and five of six died after their premature birth.

I'm not suggesting that coercing the abortion of kids with Down's is at all ok. I'm reacting to the anecdote about "coercing" the abortion of a fetus with multiple birth defects. I bet the doctors' side of the story would be a lot different.
posted by norm at 6:52 AM on September 17, 2008

I should just let this go, but I must admit this is bothering me more than it should.

Please consider, do people with this problem challenge object to misplaced apostrophes and capitalization? And do they care whether they are referred to as "a DS kid" as opposed to "a kid with who has DS"?

My guess on the first question is "no, they don't care at all, because the overwhelming majority of them are not literate".

For the second question, the argument for using "a kid who has DS" as I understand it is that by forming the language in this way we are changing our way of thinking about the situation. We want to treat them as people first, with compassion and kindness.

Well if that's what we want to do, then let's cut to the chase and just do that. Sapir-Whorf is discredited, and the constant directed change in language forced on us by particular groups is not cool. One can be conditioned to say "the boy who has DS" and still think he is a frustrating waste of space, just as one can call him "the Down's kid" or even "the retard" and love him very much - (were there no loving caregivers of children with Down's syndrome prior to this imposed linguistic shift? - of course not).

It is going to far, this changing everything we say so as never to offend anyone. I don't like it. I agree strongly with explosion above - let's allow these people to be as normal and unspecial as everyone else, because I don't want to find out in ten years that now we have to say "the individual who has black skin" or "that human who has exceptional height" when pointing someone out in a crowd or be branded as a wrong-thinker.

Forgive my rant, plinth, and understand it is a daily struggle for those of us who have assholism. You may have satisfied yourself, but don't presume to free us from our ignorance by telling us how you have decided we are supposed to talk.
posted by Meatbomb at 7:04 AM on September 17, 2008 [3 favorites]

You may have satisfied yourself, but don't presume to free us from our ignorance by telling us how you have decided we are supposed to talk.

Meatbomb, it seems like every time someone is asking for a little consideration around here, you basically show up and say "no, and it's rude of you to even ask." It's totally fine to not want to play social-nicety games and be that guy who refuses to be polite, but being crappy to people who are just trying to explain something or say that something hurts their feelings seems a bit off the unconditional love path that I usually see you trying to tread. You feeling okay?
posted by jessamyn (staff) at 7:24 AM on September 17, 2008

"that human who has exceptional height" when pointing someone out in a crowd or be branded as a wrong-thinker.

Meatbomb, as a vertically unchallenged person I am reporting you for thought-crime.
posted by jouke at 7:36 AM on September 17, 2008

either you repeatedly chose to use the verb "coerce" very, very badly, because you don't really know what it means, and that's OK so please disregard what follows here, or you revealed an amount of bad faith that makes everything else you said here suspect and invalid. all the respect due to the tragedy that struck your daughter, you and your family doesn't give you a license to lie.

For crying out loud, matteo, your disapproval of the choice to use the word "coerce" rather than, say, "strongly counsel" does not give you license to characterize plinth as a liar.

the constant directed change in language forced on us by particular groups is not cool.

Meatbomb, you're not being forced, you're being coerced.
posted by desuetude at 7:43 AM on September 17, 2008 [2 favorites]

You may have satisfied yourself, but don't presume to free us from our ignorance by telling us how you have decided we are supposed to talk.

Please don't presume to speak on behalf of 'us' and 'we'.
posted by Alvy Ampersand at 7:45 AM on September 17, 2008 [3 favorites]

Man, people on MetaFilter really can't take a break from being jerk-asses. Good luck winning the Internet.
posted by chunking express at 7:54 AM on September 17, 2008 [2 favorites]

Much as I love Meatbomb, I will have to disagree here, and implore him to not be such a meathead. "People First Language" is not just another form of identity politics, but is an attempt to humanize folks - the physically or cognitively challenged, etc - who still continue to be stigmatized and marginalized in society.

So, at least in more formal or written conversation, it will always be "People *living with* Down Syndrome", etc.

It's just more polite.
posted by KokuRyu at 7:54 AM on September 17, 2008

My favorite part is the part where people who weren't there and have no way of knowing, tell someone else that what happened didn't happen and couldn't have happened, or they misinterpreted what happened, because what they said said happened wouldn't have been right.
posted by Fuzzy Skinner at 7:56 AM on September 17, 2008 [4 favorites]

I've only ever heard it called Down's Syndrome.
posted by electroboy at 7:57 AM on September 17, 2008

That's nice electroboy. Last I check though, you aren't the only person in the world, so you probably aren't an authority on the matter. In fact, we learned up thread that people use both forms.
posted by chunking express at 8:01 AM on September 17, 2008 [1 favorite]

Also, Google is your friend.
posted by chunking express at 8:02 AM on September 17, 2008

Robert Rummel-Hudson's "Schuyler's Monster" blog had a good thoughtful entry on People First framing. He's firmly in the dubious-and-put-off corner that anyone with the smartass gene will probably resonate with.
posted by Drastic at 8:04 AM on September 17, 2008

My one and only beef with the people-first language request was the added accusation that not using it is "inconsiderate". Please don't assume that anyone not using your preferred nomenclature is being inconsiderate. It's rarely, if ever, meant that way.
posted by rocket88 at 8:07 AM on September 17, 2008 [2 favorites]

It appears that link formatting is not your friend. The zingers are more effective when you execute them properly. Better luck next time.
posted by electroboy at 8:08 AM on September 17, 2008

...as a vertically unchallenged person...
-Jouke

I knew it! Lousy person-with-Dutchism!
posted by Mister_A at 8:16 AM on September 17, 2008

Robert Rummel-Hudson's "Schuyler's Monster" blog had a good thoughtful entry on People First framing. He's firmly in the dubious-and-put-off corner that anyone with the smartass gene will probably resonate with.

I was dubious too when I first introduced to it by my girlfriend, who as I've mentioned before works with handicapped adults and is involved with the Deaf community. But when I thought about it, I realized that People First is not really about being politically correct, being sympathetic, a sop to the parents or sparing the feelings of people who are deaf, people who have Down's syndrome, or people in a wheelchair - they already know they're people, tyvm.

It's about reinforcing their status as people in the minds of the society they live and participate in, a society that after a long and sad history of misunderstanding, abuse and neglect is improving, but sometimes still drops the ball when it comes to treating these people as people. Again, they already know they're people, and if People First language catches on, everyone else will know it too.
posted by Alvy Ampersand at 8:35 AM on September 17, 2008 [2 favorites]

Christ, what an asshole Christ, what a bunch of assholes.
posted by proj at 8:40 AM on September 17, 2008

I'm a big fan of the mods here, but I think that allowing and then celebrating this post was a mistake. There's a standard way to reply to difficult issues on metafilter, and this is way out of whack with that standard. The fact that jessamyn supports plinth and plinth's plight more than she does other controversial subjects just undermines her capacity to deal with future conflicts where she would like to preserve the appearance of objectivity. When I disagree with the way a circumcision callout is going and want to post a long explanation of my views, it will be inequitable for the moderators to argue that my concerns about the way genital mutilation is being misrepresented are less important than plinth's concerns about Down Syndrome misrepresentations.

Someone above suggested that we're playing the "Umpire's Rules" game, and the law around here is whatever the mods say. If that's true, then we've truly ceased to be a self-policing community with guidelines and standards that underwrite the legitimacy of the moderators' decisions. That's not good.
posted by anotherpanacea at 8:45 AM on September 17, 2008 [10 favorites]

Two other things: first, 'coercion' can certainly be used broadly to include any kind of persuasive activity like incentives, social pressures, or encouragement. One of Robert Nozick's famous papers on this subject makes this precise case. However, this is an absurd position for any native English speaker to take. In short, I do not coerce you when I call you a 'ninny' for taking the position that being called a 'ninny' is coercion. And if you can't see that, you're a ninny.

Second, thanks, Drastic, for the Schuyler's Monster link. That blog kicks ass, and the discussion in comments is great and thoughtful.
posted by anotherpanacea at 8:45 AM on September 17, 2008

Excellent. Thank you. Please imagine I'm doing the parents-of-kids-with-special-needs secret handshake with you right now.
posted by The corpse in the library at 8:47 AM on September 17, 2008

Call people what they want to be called. If someone introduces themselves to you as "James" don't call them "Jim." If you're handed their name on a sheet of paper, and call them "James" and they ask to be called "Jim" then call them "Jim".

You might get it wrong sometimes. But if someone said to you "Please call me 'Jim', not 'James'," you wouldn't say "OH ARGH STOP OPPRESSING ME WITH YOUR POLITICALLY CORRECT SPEECH," you'd say "Sorry, I'll try to get it right next time."

You don't have to be a psychic and figure out what people want to be called in the absence of any information. But when that information is offered, it's not oppressive of them to have a preference.
posted by Sidhedevil at 8:47 AM on September 17, 2008 [16 favorites]

You've got to love Metafilter. In response to two posts that were filled with ignorance and insensitivity about Down syndrome, someone with a real-life close, personal connection to the condition, when he clearly would have been within his rights to post an angry, vitriolic response, chooses instead to try to lessen the spread of misinformation by putting up an educational, informative thread about the realities of Down syndrome, and within a few posts people are already shitting all over him.
posted by The Gooch at 8:49 AM on September 17, 2008 [6 favorites]

Also, on the original post: I think we would all agree that any doctor who pressures a patient to get an abortion, or to not get an abortion, is being a bad doctor.

Not all doctors are good doctors all the time. I believe that some doctors might pressure patients to terminate pregnancies where test results show a strong possibility of significant birth defects. Doctors pressure patients to take all kinds of actions, particularly in the OB-GYN field (see under: Caesarian sections, debate about).

So doctors need to do better with this.
posted by Sidhedevil at 8:51 AM on September 17, 2008

I hate to tell you, anotherpanacea, but jessamyn and her colleagues are under no compunction to be fair. They don't have to "preserve the appearance of objectivity." This is not a push-button operation, it's on a case-by-case basis and I believe that Plinth's post here is in keeping with the spirit of this virtual community.

Plinth saw people going off half-cocked about a subject they were clearly misinformed about, and wrote the post here to counteract the misinformation that was flying about. We want to get it right here, don't we? Plinth helped us to get it right. A similar post about the medical facts surrounding circumcision would be just fine, as long as a bunch of ninnies didn't decide to piss in the cornflakes and decry violation of a non-existent ban on discussions on circumcision. In other words, a similar post about circumcision would probably be doomed (sigh).
posted by Mister_A at 9:13 AM on September 17, 2008 [1 favorite]

There's a standard way to reply to difficult issues on metafilter, and this is way out of whack with that standard.

I don't see how this is out of whack at all, except for the fact that plinth's callout on MeTa was formulated to be non-ranty. If plinth had come in here blazing with accusations toward particular MeFites, it would've been a completely typical MeTa.

It's unusual to have two MeTa's inspired by the same post on the blue, but not unheard of -- in this case, the two MeTa posts are making totally different points. Serazin's post is a request for deletion based on the post being "Not What Metafilter is For." Plinth's post is referencing issues regarding Down Syndrome that are arguably tangential to the subject of the original FPP, with a bonus implicit request for a little more sensitivity among Mefites.

He attacked misinformation rather than people, and I think that's why a lot of us feel that this thread is a legit exception to the norm.
posted by desuetude at 9:25 AM on September 17, 2008 [3 favorites]

The fact that jessamyn supports plinth and plinth's plight more than she does other controversial subjects just undermines her capacity to deal with future conflicts where she would like to preserve the appearance of objectivity.

For what it's worth, I didn't have any idea what plinth's situation was when this was posted and (is there a non-weird way to say this?) I can't claim to "support" said plight any more than Joe Average, but I don't have a problem with this thread either.

That's not to say I think it's the archetypical metatalk post or that people should do this sort of thing all the time, but certainly this sort of thing is historically kosher—taking a hot and contentious discussion to a separate Metatalk thread in one form or another is part of what this place is for. That plinth went long-form and didn't call anyone a fucker seems like the notable variations from the template, and those aren't exactly bad things.

Someone above suggested that we're playing the "Umpire's Rules" game, and the law around here is whatever the mods say.

Obviously we get to decide whether or not to press the special buttons, so in that sense it's true, but I don't totally agree with the idea that it's that cut and dry. A big part of what informs those decisions is what the community has to say, and I don't see that ever changing—our job is not to make the site in our own images, but to try and keep the site being what it is and what people like about it.

Like someone said upthread: letting something fly is a case-by-case thing. We're not setting precedent or engraving in stone every time we do or don't delete or close a thread. There's been a surprising (to me) amount of is-this-what-metatalk-is-for talk in this thread—I can understand both sides but don't personally see this as nearly as controversial as some folks do, I guess—but (a) that this thread gets to live isn't some shattering, world-changing event, and (b) it's fine for people to talk about whether or something goes here, even if in volume it seems a little over the top in this case.
posted by cortex (staff) at 9:32 AM on September 17, 2008 [1 favorite]

people going off half-cocked

We prefer to be called "The Circumcised."

Jerk.
posted by Floydd at 9:36 AM on September 17, 2008 [3 favorites]

Call people what they want to be called. If someone introduces themselves to you as "James" don't call them "Jim." If you're handed their name on a sheet of paper, and call them "James" and they ask to be called "Jim" then call them "Jim".

I agree with this, and it's why I for example use terms like pro-life instead of anti-abortion most of the time. What I don't agree with is when people argue that the polite term is the only valid term to use, or that using the polite term somehow serves some higher purpose other than not offending people.

I also think that the backlash against PC language is mostly due to the inherent problem of saying "Hi everyone, here is a new rule you need to follow, kthxbye." People feel like they already do a lot to be polite when speaking to others, and tacking on a new politeness rule can seem like more of a burden rather than a useful new language device.
posted by burnmp3s at 9:37 AM on September 17, 2008 [2 favorites]

our job is not to make the site in our own images, but to try and keep the site being what it is and what people like about it.

I'm swamped, so I can't do a Photoshop of you and Jessamyn as giant granite busts carved into Rushmore with giant block letters "METAFILTER" underneath them, but this image needs to happen.
posted by Ryvar at 9:40 AM on September 17, 2008 [1 favorite]

Thanks, plinth.

I felt personally angry about a lot that was said in the original post, and in the MeTa thread (up to where I quit reading both), and I really admire your patience and restraint in addressing the issue here.

I think a lot of people we otherwise really like and (even, possibly) admire, especially here at MeFi, have debilitating problems related to the ability to see, or even imagine, certain life challenges outside their own experience in actual human terms - and tend to respond to such an issue as if it were a game or a statistical/logic puzzle - or worse, just some argument to be won (or not even "won" but as a field on which to possibly score every now and then, anyway), armchair-gladiator style. This sometimes makes me view them as monstrous, but then I realize that they are just suffering from a certain kind of defect, and that some of them may partially recover from this once they begin living through the sorts of difficulties that ordinary life, and relationships, and parenthood, etc., can bring.

For many people, it seems, it's much easier to support ideals of humanity that are far, far away from their own culture and identity, and much more difficult to understand and relate with compassion when ideas address the struggling humanity to be found much closer to home. Maybe this is a form of fear or denial - something I struggle with myself, but in a different way.
posted by taz at 9:43 AM on September 17, 2008 [10 favorites]

tacking on a new politeness rule can seem like more of a burden rather than a useful new language device

Candy? No thanks, I'm diabetic.

Candy? No thanks, I'm a person with diabetes.

Yeah, the latter seems a little silly and clunky. I'm generally of the opinion that you should go with the most common usage, unless told otherwise by a member of the affected group.
posted by electroboy at 9:54 AM on September 17, 2008

electroboy, nobody with diabetes would object to either "diabetic" or "person with diabetes."

The formulation most people object to is "You're a diabetic."
posted by Sidhedevil at 10:15 AM on September 17, 2008 [2 favorites]

That said, I can't imagine being pregnant and being forced to carry it to term.
Many parents are being coerced to abort by doctors - similarly to how parents were coerced to institutionalize post birth. It's similar to being forced to carry to term

No, it really isn't.

On the one hand, you have physicians who urge their patients to abort their fetus who seems to have Downs. This isn't nothing, to be sure, since most people still give physicians a large amount of moral authority.

But at the end of the day, you can say "Dr. So-and-so, stop urging me. My mind is made up." Or you can say "Fuck you, Dr. So-and-so," and choose another physician who others have reported is more supportive of carrying fetuses that seem to have Downs to term. You might well not exercise that choice because you are personally cowed by your physician, but it is there.

On the other side, you have the potential of being legally required to carry the fetus to term.

Not a law that urges you to carry it to term.

Not a law that badgers you incessantly to carry it to term.

A law that says that you WILL carry it to term, or you will be either forcibly, physically prevented from seeking an abortion, or you will be punished by the state, or both.

They are not the same thing. They are not remotely similar to each other, in the same way that your mother guilt-tripping you into coming home for Thanksgiving is fundamentally dissimilar from the State strapping you to a gurney and killing you for doing something it strongly disapproves of.
posted by ROU_Xenophobe at 10:19 AM on September 17, 2008 [1 favorite]

I realize that they are just suffering from a certain kind of defect, and that some of them may partially recover from this once they begin living through the sorts of difficulties that ordinary life, and relationships, and parenthood, etc., can bring

I don't think it's fair to assume that anyone on this site is a defective human being who has not been exposed to normal life experiences. People can have opinions that you or I or everyone would disagree with, but jumping to the conclusion that they are somehow inferior to "normal" people is condescending and offensive.
posted by burnmp3s at 10:26 AM on September 17, 2008 [1 favorite]

And do they care whether they are referred to as "a DS kid" as opposed to "a kid with [or who has] DS"? Um, yes they do. People with Down Syndrome and lots of other developmental disabilities/intellectual disabilities are part of the disability community. And, like, talk and and think about and discuss language and labels. Membership groups, advocacy groups, and individual advocates who have developmental/intellectual disabilities consistently endorse people first language.
posted by ClaudiaCenter at 10:35 AM on September 17, 2008

There's a standard way to reply to difficult issues on metafilter, and this is way out of whack with that standard.

True. Plinth comment was level headed, restrained, and well thought out. What the fuck was he thinking, amirite? If you're going to start a metatalk thread, it better damn well start with the threat you'll chop of your arm, and move forward from there.

This isn't the metatalk I know and love.
posted by chunking express at 10:48 AM on September 17, 2008 [1 favorite]

burnmp3s, that was sort of the point.
posted by taz at 10:49 AM on September 17, 2008

The formulation most people object to is "You're a diabetic."

I'll have to tell my father in law. He'll be surprised he can't say "I'm a diabetic" anymore.
posted by electroboy at 10:49 AM on September 17, 2008

two thoughts:
Our late, apparently universally liked, DFW was 'flawed', as am I. Not physically, but emotionally/mentally/spiritually whatever. Many artists are, as are many auto mechanics and roofers. People who don't think that sucking another breath is really worth it. People who are no 'whole'. I gather than quite a few here (by their own admissions, I'm not making guesses or cracking wise) have serious depression along with other DSM-IV brain chemical glitches. This is the human condition for a large majority, and you can believe the costs are tremendous. Not just treatment, but all the other issues, such as missed work days. I suggest Andrew Solomon's amazing Noonday Demon for those who may be clueless, or interested.
Second, and yes this is anecdotal, my younger sister, after having two lovely children, became pregrant with what her doctor called 'a physical monster' with 'skin like a crocodile' and 'a face that was just a mass of tissue'. When my sister made it clear she would not abort, the doctor...well, made her feel so stupid and obstinate, and on every visit he would again and again suggest an abortion (you need to make a final decision soon!"), that sis got another doc, this one a woman, who asked her once about aborting and respected her decision so much that she hugged my sister ans was with her every step of the way.
So yeah, I have no difficulty believing there are doctors who coerce mothers-to-be.
Baby Jack was born with severe health problems, but was physically beautiful, and acted happy and pain free. He died of natural causes at 5 days old, having never left intensive care. You are, of course, free to make yr own judgments as to 'mercy killing' and so forth.
posted by dawson at 10:49 AM on September 17, 2008

Plinth - thank you for this post. We've certainly heard from a few who lack the compassion gene but as you and I have discussed in the past, it's hard to really get what it's like unless you've been there, or been nearby. As always I wish you, Mrs. Plinth, Alice and Stuart all the best.
posted by Kangaroo at 10:53 AM on September 17, 2008

plinth: Any representation of something in language will often carry connotation or nuance in addition to meaning and is also likely to change over time.

Actual question, not argumentation:

I get the nuance between the "has X" and "is X" constructions. A person is qualified by X in the first, but defined by it in the second.

But is there that much perceived nuance, in English, between "a [qualifier] person" and "a person with [qualifier]" / "a person who has [qualifier]"? They strike me as pretty equivalent constructions, via a quirk of English grammar; just as "a red truck" and "a truck that is red" both express the same degree of truckness and redness.

I guess I can't help but compare it to French, where there is no quick and easy way to flip nouns and adjectives. The main options are either "a person [qualifier]" or just "a [qualifier]": Un homme aveugle, une femme séropositive, un garçon autiste; un aveugle, une séropositive, un autiste (lit. a blind, an HIV-positive, an autistic).
posted by CKmtl at 10:55 AM on September 17, 2008

The formulation most people object to is "You're a diabetic."

I'll have to tell my father in law. He'll be surprised he can't say "I'm a diabetic" anymore.

This does not follow logically on several levels. I can't even figure out how you got there. Except perhaps as a snarky misrepresentation to belittle others' preferences.
posted by desuetude at 11:03 AM on September 17, 2008

But is there that much perceived nuance, in English, between "a [qualifier] person" and "a person with [qualifier]" / "a person who has [qualifier]"? They strike me as pretty equivalent constructions

Perceived by whom? There's the rub. They may strike you as pretty equivalent constructions, but you (I'm guessing) are not someone directly affected by the terminology. Neither am I, but I try to operate on the principle that's been stated above of calling people what they want to be called. If a large number of people with a condition make it clear that they want to be called "a person with [qualifier]," then I'll try to remember to call them that. After all, I prefer not to be called [insert harmless-seeming nickname that I can't stand and am damn sure not going to mention in front of this group of hoodlums], and, well, golden rule and all that.
posted by languagehat at 11:06 AM on September 17, 2008

Thanks, plinth. That was very informative and touching.
posted by SpacemanStix at 11:09 AM on September 17, 2008

Thanks, plinth. I have been hoping that you'd post or comment on this.
posted by amro at 11:18 AM on September 17, 2008

burnmp3s, that was sort of the point.

Oops, sorry, missed the sarcasm. I've seen that exact argument made with no irony whatsoever.
posted by burnmp3s at 11:36 AM on September 17, 2008

is there that much perceived nuance ... ? I think, yes, there is, particularly with disabilities/medical conditions that have a history of stigma. (So, whenever the hypothetical example is changed to something with less/no stigma, or to something non-medical/non-disability, it's not a good analogy in my opinion.) There are different nuances to -- he's a schizophrenic; the schizophrenic in room 3; he's schizophrenic; he has schizophrenia; he's afflicted with schizophrenia; he suffers from schizophrenia; he lives with schizophrenia; he's a person with schizophrenia; [insert many more examples including examples that exclude the diagnosis/label schizophrenia], etc., etc. Or, consider a more accepted set of examples: he's a cripple; he's crippled; he's wheelchair bound; he has a spinal cord injury; he's a person with a physical disability; etc., etc. It's not a science or an edict or a set of rules -- it's something to think about. It won't stay the same over time or across cultures/languages, it's just that in this time and place and in English the different formulations have different nuances. And it also depends upon the context of the entire set of words, sentences, etc. There's no set formula for every situation, but people first is a good starting place or guidelne.
posted by ClaudiaCenter at 12:03 PM on September 17, 2008

That plinth went long-form and didn't call anyone a fucker seems like the notable variations from the template, and those aren't exactly bad things.

cortex, I'm tempted to respond to your comment, and to the comments of those who made fun of my 'out of whack with that standard' formulation, by opening up a new Metatalk thread explaining exactly what I meant. But of course I won't: there's already a thread here for that discussion to take place.

This is the standard by which metafilter discussions proceed: opening up a new thread on a topic still actively being discussed elsewhere has historically been frowned upon. I have no problem with anything that plinth has said except the whole 'coercion' thing, and I appreciate his willingness to share and correct mistakes among the userbase. But actively encouraging it does set a precedent: it supplies an example for future posters to point to. Not respecting the precedent set by declaring a one-time exception to the rule just undermines your legitimacy and makes enforcement look capricious.

I feel the same way about three Down Syndrome threads as I do about all the Palin threads, but you and jessamyn seem to see value in three Down Syndrome threads while actively discouraging new election-update-filter. So long as you're not playing "Umpire's Rules," I think it's incumbent on you to find the principle that distinguishes this unnecessary double from any other ax-grinding double. It can't just be that you happen to like the ax. As a comment, this probably deserves to be sidebarred, as others pointed out. I think the right thing to do would be to close this thread and point plinth to the already active threads, just as you would do for any other double. I think that's the consistent and viewpoint neutral thing to do, and I'm curious to know what reasons you have if you truly think otherwise.
posted by anotherpanacea at 12:42 PM on September 17, 2008

@anotherpanacea People call people out on MetaTalk all the time. That's basically what this post is all about. That Plinth wasn't a dick, didn't bitch out people in the thread, or do any of the things people normally do in a call out is actually a nice change of pace. If people were opening MetaTalk threads all the damn time this might be an issue, but as they aren't, we don't need to fight the good fight just yet. Sometimes it is possible to read an insightful metatalk post and not feel the compulsion to bitch about it. Hard I know, but we can all do it if we work together.
posted by chunking express at 12:50 PM on September 17, 2008 [3 favorites]

This does not follow logically on several levels. I can't even figure out how you got there. Except perhaps as a snarky misrepresentation to belittle others' preferences.

Whose preferences? A bunch of wieners arguing about stuff on the internet, or the actual person affected by the condition?
posted by electroboy at 12:58 PM on September 17, 2008

A bunch of wieners arguing about stuff on the internet, or the actual person affected by the condition?

Plinth points out his sons preference, and the preference of people in that community, in his post. ClaudiaCentre posted a link where people with the condition also express their preference. Certainly someone here is a wiener arguing on the Internet.
posted by chunking express at 1:02 PM on September 17, 2008

electroboy, um, scroll up?
posted by desuetude at 1:12 PM on September 17, 2008

Sometimes it is possible to read an insightful metatalk post and not feel the compulsion to bitch about it. Hard I know, but we can all do it if we work together.

You seem to be in a bad mood, chunking. I'm not sure why you've decided that I am the cause of your woes, but if you're in Toronto right now I promise you that stepping away from the computer and going outside will be sure to lift your spirits. It's a beautiful day out there.
posted by anotherpanacea at 1:20 PM on September 17, 2008

But actively encouraging it does set a precedent: it supplies an example for future posters to point to. Not respecting the precedent set by declaring a one-time exception to the rule just undermines your legitimacy and makes enforcement look capricious.

Matt and Jess and I have all been called worse than capricious in the past for making different decisions about different instances of similar things, and there are worse things that can happen on any given day than that. We aren't in the business of making every decision into a strong precedent; giving stuff a pass or not or letting it squeak by with a "let's not go crazy with this" is just the sane-making day to day process on the site, and that requires a certain flexibility on our parts and a certain willingness to accept inconsistency and changing opinions from the community. It's imperfect, but it works pretty well, and I think represents a much broader portion of the guidelines and community mores here than those things that can be defined in terms of rock-hard precedent.

So long as you're not playing "Umpire's Rules," I think it's incumbent on you to find the principle that distinguishes this unnecessary double from any other ax-grinding double.

That we don't have a long, cyclical history on the site of months-long obsessions with Down Syndrome is I think a pretty stark distinction from electionfilter. Short bursts of thematic posting or topical discussion between multiple threads have happened in the past and will happen in the future, and our concern is generally more with keeping a trend from getting out of hand than with making sure there's never, ever two threads on the same subject at the same time.

It'll always be fuzzy territory, and subject in no small part to the collective community reaction—clearly, there's some recognition in here that some folks do feel like it's cascading a bit, and I think it's safe to say that someone else starting yet another DS thread right now would be weird and would get axed. But I can't buy the notion that not having axed plinth's thread is setting anything like a dangerous sentiment; it seems like the worst case scenario is that we do, indeed, end up telling someone else to cut it out and acknowledge that trend x is getting out of hand. If folks think we're capricious for that, they think that.
posted by cortex (staff) at 1:28 PM on September 17, 2008 [1 favorite]

@anotherpanacea The problem as of late is that my jerk-ass comments in the Palin threads are how i've taken to commenting on most of the site. I'm not trying to be a dick to you in particular. I just think that we really don't have enough MetaTalk posts like this one to really worry about MetaTalk turning into a 'look at my pretty comment' arena.
posted by chunking express at 1:35 PM on September 17, 2008

Plinth points out his sons preference, and the preference of people in that community, in his post. ClaudiaCentre posted a link where people with the condition also express their preference.

Which I'm sure they arrived at freely, of their own accord, without any coaching from their "advocates".
posted by electroboy at 2:01 PM on September 17, 2008

electroboy: "Which I'm sure they arrived at freely, of their own accord, without any coaching from their "advocates"."

Many people with Down syndrome can actually have opinions. Some even want to rock.
posted by The corpse in the library at 2:18 PM on September 17, 2008

it seems like the worst case scenario is that we do, indeed, end up telling someone else to cut it out and acknowledge that trend x is getting out of hand. If folks think we're capricious for that, they think that.

There's also a big difference between a few related MeTa threads [I'm counting maybe three now?] and a couple related MeFi threads. ElectionFilter stuff is a MeFi phenomenon and one we've discussed many times over many years. I think the pricnciple that distinguishes the two things are

1. electionfilter updatefilter type deletions happen in MeFi, not MeTa
2. what cortex said about electionfilter being something that is always with us on the site, not something that popped up out of noplace.

Additionally, we just tend to not delete stuff from MeTa that has any redeeming non-trainwreck features. I think cortex and I both said "can we see why this post should maybe be out on its own?" and thought "yeah I guess I can see that" and left it alone.
posted by jessamyn (staff) at 2:28 PM on September 17, 2008

electroboy, your father-in-law is "most people"? He's not even "most people with diabetes," let alone "most people."

Unless, of course, your father-in-law is Wilford Brimley.
posted by Sidhedevil at 3:31 PM on September 17, 2008

electroboy, your father-in-law is "most people"? He's not even "most people with diabetes," let alone "most people."

So being as you are neither "most people" nor a diabetic, I can just ignore what you're saying?
posted by electroboy at 4:07 PM on September 17, 2008

(Just to clarify, I'm advocating MeTa closure and redirection to the open thread, not MeTa deletion, which I understand is a bigger deal.)

I think cortex and I both said "can we see why this post should maybe be out on its own?" and thought "yeah I guess I can see that" and left it alone.

I'm not sure how this non-trend "can we see why this post should maybe be out on its own" rule doesn't boil down to "Umpire's Rules." In the past, we've violated posting parsimony when the old thread was extremely large and unwieldy or had fallen off the front page of metatalk. Here, the reason seems only to have been, "I have something to say as a part of these other conversations but I want to trump everyone else by promoting my own comment to post status." We see these sort of stunt posts in metatalk all the time, and you close them and point the person back to the open post. Now it seems that, sometimes, you won't. The rule you're enunciating now is something like, "Posting parsimony, except when we see a good reason not to, and we won't say what kinds of reasons count in advance." That encourages testing the limits, because nobody knows what will fly and what won't.

If people want to troll and be trolled in that space of deeply complex moral psychology related to caring for the young and vulnerable, they had two perfectly good threads to do it in. Ultimately, the whole DS/abortion post and subsequent conversation was just a special case of "Metafilter Fails at Palin," and a disgusting example of what MeFites can allow themselves to say and do when they think it's legitimated by party loyalty. That's largely why I'm questioning the decision to make and keep open yet another thread for the community to behave badly in.
posted by anotherpanacea at 4:10 PM on September 17, 2008

Ultimately, the whole DS/abortion post and subsequent conversation was just a special case of "Metafilter Fails at Palin," and a disgusting example of what MeFites can allow themselves to say and do when they think it's legitimated by party loyalty. That's largely why I'm questioning the decision to make and keep open yet another thread for the community to behave badly in.

Wait, what? What?

Keep flogging that horse, maybe it'll become un-dead.
posted by Marisa Stole the Precious Thing at 4:15 PM on September 17, 2008

Are people behaving badly in this thread? I think they aren't. That is in marked contast to the other threads on similar topics.

That encourages testing the limits, because nobody knows what will fly and what won't.

People test the limits because they like testing the limits and screwing around. They'll do that whether there are hard and fast rules or hippy-dippy fast-and-loose guidelines.

anotherpanacea, I get what you're saying, i think, but I think it comes down to wanting to codify moderation practices more than we already have and I don't think that's going to happen. I also don't think that that's a bad thing for reasons we've enunciated.

The rules are that there aren't any hard and fast rules. If you don't trust us, then I guess you don't trust us.
posted by jessamyn (staff) at 4:19 PM on September 17, 2008

So being as you are neither "most people" nor a diabetic, I can just ignore what you're saying?

You're perfectly welcome to ignore what I'm saying, electroboy.

But let's look at organizations that serve lots of people with diabetes and see what they're saying, shall we? Diabetes UK describes itself as "the charity for people with diabetes." The American Diabetes Association refers to the people it serves as "people with diabetes."

These organizations represent millions of people. Your father-in-law represents himself. I prefer to take my cues about politeness and preferred terminology from these organizations than from your father-in-law. Your father-in-law is welcome to correct me about how he'd personally prefer to be described.
posted by Sidhedevil at 4:21 PM on September 17, 2008

Thanks again, Plinth. I appreciate the thoughtful, reasoned post, I could give a shit if it is on the gray.
posted by msali at 4:47 PM on September 17, 2008

Well done, Plinth. Thank you.
posted by theora55 at 5:10 PM on September 17, 2008

Plinth, thank you for this post. Reading it last night brought to mind fond memories of someone with Down syndrome I knew many years ago and sent me to bed with happy tears in my eyes. He was unbelievably cantankerous and most people found him to be a trial--a definite exception to the "always happy" stereotype--but he taught me how important it can be to see the world through someone else's eyes. I doubt I would be as empathetic and compassionate today if I hadn't known him. I wish all the best to your family.
posted by weebil at 5:43 PM on September 17, 2008

Plinth points out his sons preference, and the preference of people in that community, in his post. ClaudiaCentre posted a link where people with the condition also express their preference.

Which I'm sure they arrived at freely, of their own accord, without any coaching from their "advocates".

What is wrong with you? Now it's an insidious conspiracy to place phrases that apparently annoy you into commonplace usage? Say whatever you want, call people whatever you like, tell your father-in-law whatever you want, and revel in the names you get called. After all, the world does, in fact, turn around you.
posted by desuetude at 5:54 PM on September 17, 2008

I think there's two separate things going on with the "what are you allowed to call people" issue, which may be leading to some talking at cross purposes. (I hasten to point out right from the start that I would always strive to refer to people in the manner they prefer - it's only polite.)

As a justification for wishing to be called "a person with Down Syndrome" as opposed to any other formulation*, the idea that this emphasises the person as opposed to the syndrome is pretty weak. Language doesn't work like that, as others have pointed out. What is important (or so it seems to me) is that there be some formulation with which people can demonstrate that they're considering the feelings of others - just as respecting someone's preference to be called James rather than Jim does.

James may feel that this is a more distinguished version of the name, and that it will cause people to respect him more than if they use the more informal "Jim". He may well be completely wrong about this, and people will respect him or not respect him regardless of what name they use, but it's still a useful marker of how considerate and friendly that person is being. The form itself is largely immaterial; it's the thought - and the clear signal that you've given it thought - that counts

But one pitfall of this is the possibility that you misinterpret someone's attitude when they use the wrong formulation, out of ignorance of your preferences rather than malice or lack of care. If you become too attached to the idea that there's something inherently negative about "she is learning disabled" as opposed to "she has a learning disability", then you can both feel yourself to be more isolated and disliked than you really are, and you can alienate people by calling out perfectly innocent language usage.

The other pitfall, of course, is that is provides a useful mask for people who actually don't give a shit, but wish - for whatever reason - to make you think that they do.

*Polite ones, of course - traditionally insulting or pejorative terms are a whole other matter, and are of course shitty whether used casually or maliciously.
posted by flashboy at 6:01 PM on September 17, 2008 [2 favorites]

Many people feel differently.
posted by electroboy at 7:17 PM on September 17, 2008

Thank you Plinth, I appreciate your kindness in formatting this post. I had to stop reading the other threads because of the garbage therein. If I had a child with Down syndrome, I just don't think I could be so giving to the community.

To all the ones bitching about this having its own thread, is it really worth all the time and energy that you are using to argue that point? A member of this community wanted to help educate the group to something that he deals with every day in the hopes of making his daughter's world a little easier. The mods have said it's ok, so let it go!! There will be plenty of room left on MeTa for your future call outs or gripe fests. Give Plinth his post, read it, learn something and move on, content that you may be a better person for it. I think that I am and I'm appreciative of that.
posted by pearlybob at 7:52 PM on September 17, 2008

The "coercion" thing has been responded to a number of times, but I still feel the need to chip in. I'm not the parent of a disabled child; I am myself a disabled person.

"Coercion" is absolutely correct. The information provided by doctors to patients with acquired disabilities about their potential future quality of life is well-documented as often being incorrect, incomplete, or biased. I've not experienced that myself - I'm a lifer, as it were - but I have had doctors make assumptions about my independence and quality of life that were not only incorrect, but offensively so. And I have friends with spinal cord injuries who have confirmed that the information they received during rehab was often biased. Whether this is intentional or not is up for debate; but there's no question in my mind that disability, whether physical or mental, is so strongly stigmatized in our society that even within the medical community there are many who buy into ideas like, "better off dead" and "a waste of resources". When those attitudes get communicated, either directly or subtly, to patients or parents, I think that qualifies pretty clearly as coercion.
posted by spaceman_spiff at 10:59 PM on September 17, 2008 [2 favorites]

cheers for the post plinth - there should be some sort of banning category for pedants here - it's not as if they actually ever contribute anything to metafilter - i'm surprised it's never been done.
posted by sgt.serenity at 11:15 PM on September 17, 2008

"People with pedantry" please, Sarge.
posted by UbuRoivas at 12:02 AM on September 18, 2008

learn something

I have learned that having diabeties may lead to having an obtuse and absolutist son-in-law with a shaky sense of logic and a pretty condescending view or what people with Down's Syndrome are capable of.
GET TESTED BEFORE IT'S TOO LATE, PEOPLE!!!

Matt and Jess and I have all been called worse than capricious

WISHY-WASHY?!?

MetaFilter: Failin' at Palin Since 2008
posted by Alvy Ampersand at 12:20 AM on September 18, 2008 [1 favorite]

Plith--good for you. I thought about making this post in one of the original threads a couple days ago, but then decided that the depth of bullshit in those threads didn't merit my time.

I don't generally go in for the PC versions of everything, but Person First is something that I feel very strongly about. The .9 seconds it takes you to say "The long-haired lady with the vision impairment" instead of "That blind redhead" humanizes an individual and, at the same time, gives that disability less power. You don't touch a person's wheelchair without permission, you don't stand above their wheelchair looking down at them, and you harshly avoid words like "retarded" when describing folks, even though the official category is "MR/DD" (mentally retarded, developmentally disabled.)

If the only way you have to describe someone is their physical difference from yourself (The black dude, the retarded kid, the blind lady), then you've got a long way to go learning about just how important you're not and just how valuable other folks are.

I'm lucky enough to work with adults with trisomy, most of whom are old enough that special education didn't exist for them in school. With any luck at all, Plith's young one won't ever need a program like ours, which teaches everything from nutrition to shopping to personal hygiene and sex education.

Here's to you and yours Plith---please feel free to ignore the boat full of folks more concerned with their wallets than the general welfare of humankind. :)
posted by TomMelee at 5:10 AM on September 18, 2008 [2 favorites]

If the only way you have to describe someone is their physical difference from yourself (The black dude, the retarded kid, the blind lady), then you've got a long way to go learning about just how important you're not and just how valuable other folks are.

This is an over generalization. If I'm in a subway car trying to tell my friend that I like such and such lady's purse, and that lady just happens to be the only black lady on a train full of white folks, I don't spend 5 minutes trying to be pc ("that lady with the brown hair, red shoes, funny looking bracelet, pierced nose..."). I say "the black lady with the cool purse". It doesn't mean I don't value her or that I consider myself more "important". That's just silly, and frankly, my black friends agree. If I'm in a room full of brunettes, I don't mind if someone points me out as "the blonde girl". It's the quickest way to identify me.
posted by Evangeline at 8:49 PM on September 18, 2008 [1 favorite]

...says the girl without physical or mental impairment.Although again I'm not trying to say that racial description is inherently bad.

(Not that "the black dude" has a physical impairment, but ideally I think you'd say something else in conjunction with the racial adjective.)

What about "The blonde chick with the huge zit", or "that blonde whose roots are showing?", or "the blonde girl with one big and one little boob"....versus "the blonde with the pretty smile".

And really, five minutes? If there was a girl with an awesome purse on the subway, I'm pretty sure saying "Wow that lady has an awesome purse" will suffice rather than saying "that black lady with the awesome purse". Does it take longer to say "the lady in the red jacket with the awesome purse?"
posted by TomMelee at 4:36 AM on September 19, 2008

When those attitudes get communicated, either directly or subtly, to patients or parents, I think that qualifies pretty clearly as coercion.

I know what you mean. In normal conversation, sure, we can talk about that as "coercion," even if that's sloppy, since it reflects the degree to which people can be swayed by their physicians.

But in a statement where that's directly compared to a law that would actually, physically require women to carry fetuses with apparent Downs to full term even when they refuse to, it's disingenuous or dishonest to call that "coercion" and equate it to the very real, actual, no-shit coercion that such a law represents.
posted by ROU_Xenophobe at 5:54 AM on September 19, 2008

Thanks a lot for posting, plinth.
posted by goo at 7:59 AM on September 19, 2008

...says the girl without physical or mental impairment.

And you know that about me how exactly? Mighty big assumption to make.

Being black is not a handicap, so no, sorry, I don't feel bad describing someone as "black". Have you been on the subway in New York? Do you know how many chicks with awesome bags can be in one car? And I WOULD say the "girl with the huge zit" if that was the quickest way to describe her. Fuck, I'm not saying it to her face. And just because it's the quickest way to describe her at the moment doesn't mean I think it's the characteristic that defines her.

This is what confuses me: I understand the logic behind People First language, but how often, when you directly address ANYONE, do you mention ANY physical or mental characteristic? I never say, "Hi tall guy, I like your tie" or "Hey blind guy, nice shoes!" or even "Hey you with the red hair, you're standing on my foot". There's really no chance I'm going to say to someone, "Hello Down Syndrome person, how are you today?" So it seems to me this language was put in place to benefit friends, family and caretakers. Which is not a bad thing, and if it makes them feel better, that's how I'll refer to their loved ones when I'm speaking to them, but I'm not going to make a point of being painfully politically correct when they're out of earshot.
posted by Evangeline at 11:39 AM on September 21, 2008 [2 favorites]

Evangeline, what you don't understand is that if you say "that black guy" -- even if you don't say it to the person's face -- you create a ball of negative racist energy that hangs in the air long after you've left the subway car. As someone who has bumped his head on one of those balls, I can tell you it's not fun.

My advice to you is to use positive-thinking exercises to train your brain to not notice skin color. Before you know it, you'll see a guy and not even realize whether he's black or white. In fact, you won't even know for sure if he is a guy. You'll just know he's a person. And that's just step one. After a few years, you'll reach a stage where you're not sure if he's a person or an aardvark. Then -- and I hope you reach this pinnacle -- you won't be able to discern life-forms from any other sort of matter. You'll realize that we're all part of a great cosmic stew (yum!).

To be honest, I haven't yet attained such enlightenment. I see black guys and I do realize that they're black, but I just keep that realization to myself. And while I force myself to ignore skin color, I remind myself that I'm not doing so because skin color is bad. I'm doing it because black people have had to endure years and years of abuse. So black is good. Just don't talk about it. Kind of like orgasm. Orgasm is good, but you don't talk about it on the subway, right?

One day we'll all be enlightened. Slavery will be way behind us and you'll be able to look a black guy in the eye and say, "Hey, you're a black guy!" He'll say, "Indubitably! That I am!" And you'll both smile do a little dance.
posted by grumblebee at 11:52 AM on September 21, 2008 [2 favorites]

Dammit, I hate when people refer to me as "that handsome guy" or "that hot, yet distinguished gentlman." I would rather be referred to as a "man of handsomeness" or "the gentleman with hotness."

None of what I just said has any real meaning to the debate. I just really need an ego boost. I'd settle for "the gentleman whose nose isn't really that big once you get used to it, and whose eyes aren't quite so squinty and beady as they first appear, and whose receding hairline suits him and is appropriate for his age, and whose flabby midsection is not so offensive when he wears the right shirt."
posted by Fuzzy Skinner at 12:43 PM on September 21, 2008

People refer to me as "that Man Of La Mancha." I prefer it to "that La Mancha Man."
posted by grumblebee at 1:21 PM on September 21, 2008

Fuck, I'm not saying it to her face.

Wait we're supposed to speak differently depending on whether the person can hear us?

See here's the thing with disabilities. You don't understand them if you don't have them or aren't intimately acquainted with them. Let me give you examples:

Person 1: "Wow that kid is working really hard"
Person 2: "Especially considering he has Down's"

(And said boy with Down's is 1 table away, cleaning it off.)

Person 1: (With the best intentions, strolls up to Lady in Wheelchair, places hand on wheelchair) "Here let me help you!" (push...)
Lady in Wheelchair: HolywhatthehellwhyamImoving?

Person 1: (With Mom in tow at a restaurant) "Hi, will my mother be allowed to bring her assistance dog in your Restaurant?"
Person 2: Is she blind?
Mom: Why the fuck don't you ask me yourself, I'm standing right here?

Person 1: (As I am getting out of my car, parked in the handicapped spot with a handicapped placard on my mirror) YOU BETTER MOVE YOUR FUCKING CAR BUDDY, THAT'S FOR HANDICAPPED PEOPLE!!
Me: Because you can see every handicap, right?
Person 1: I'M CALLING THE COPS
Me: Great, I'll sit right here. Can't wait to show 'em my registration.
Person 1: I'M TELLING MALL SECURITY
Me: Has it occurred to you that my handicap might just be extreme emotional instability and narcissistic rage?
Person 1: FUCK YOU BUDDY (runs...)

(see, I have a neurological condition where I sometimes randomly pass out when moving after sitting still. I never use the placard except after long rides. That day, I'd been in the car for 7 hours straight.)


People say all sorts of shit without meaning to be dicks. Doesn't make it right.

And no, being Black or White or Purple or Green isn't a handicap. However, you wouldn't say:

"Check out that Negro lady with the wicked purse!", so you don't need to say "Check out that Black lady with the purse!" Not seeing color means NOT SEEING COLOR, it means you see people. It's fine to be white and get pissed off at a black person, to be a Bulgarian and get pissed off at a German. The point is that you're mad at the person and not their particular shade.

No, being any given color isn't a handicap, but it's also not necessarily the thing that should be used to describe our differences, if for no other reason than it's not necessary. I maintain that "The lady with the red jacket and the kickin handbag" doesn't take any more time than "The black lady with the Dolce and Gabbana." And if it does, and if that time is seriously valuable to you---then you must make a lot more per hour than I do.
posted by TomMelee at 9:53 PM on September 21, 2008 [1 favorite]

Wait we're supposed to speak differently depending on whether the person can hear us?

Ummm... yes. Sometimes, yes, unless you really want to hurt some feelings. Let's continue the fun dialogue scenarios, shall we?

Scene 1
Person 1: Have you seen Mary? I'm really worried about her - she looks like shit. Do you think she's sick?
Person 2: I don't know - why don't you ask her?
Person 1: Good idea!

Scene 2: (5 minutes later)
Person 1: Hi Mary, you look like shit - why is that?
Mary: Go fuck yourself.

You might say that Person 1 shouldn't have said Mary looked like shit even when he referred to her in third person, but like me, Person 1 doesn't believe in karmic retribution, so we may be at an impasse here.

No, being any given color isn't a handicap, but it's also not necessarily the thing that should be used to describe our differences, if for no other reason than it's not necessary.

Said without prejudice, skin color is as meaningless as jacket color, and either one of them should be given equal weight when used as an adjective. The only reason I would use jacket color instead of skin color in a conversation would be if I'm talking to strangers who might misinterpret me OR if jacket color was the most expedient way to identify someone. Or hair color or shoe color or what-have-you. The people who know me wouldn't misunderstand me. I'm not talking about touching a stranger's wheelchair or loudly proclaiming things in a restaurant.

And if it does, and if that time is seriously valuable to you---then you must make a lot more per hour than I do.

Yes, I have a hired driver. I just ride the subway because it's fun! So much fun!
posted by Evangeline at 5:14 AM on September 22, 2008

"Check out that Black lady with the purse!" Not seeing color means NOT SEEING COLOR, it means you see people.

That is one of the oddest things I've ever read. Maybe I'm misunderstanding, but are you saying you don't see a person's skin color? That's like not noticing that a person is wearing clothes. How can you not notice it?

I certainly notice skin color. And there's no way I'd push a button to make myself stop noticing it. That would be like pushing a button that makes me unable to see flowers or houses or water. I don't want to impair my vision. And I LIKE skin color. And I like skin color differences.

Do you mean "not seeing color is pretending you don't see color" or "not seeing color is obeying some polite rule not to discuss color?"

It's fine to be white and get pissed off at a black person, to be a Bulgarian and get pissed off at a German. The point is that you're mad at the person and not their particular shade.

I wonder if you're confusing two things. (1) getting pissed off at someone BECAUSE he's German; (2) Getting pissed off at a person because of something he did AND -- at the same time -- noticing he's German.

If you have a beard and you step on my foot, I'm going to notice that you have a beard. I might even say, "That bearded guy stepped on my foot." That doesn't mean I'm pissed off at you because you have a beard. I'm pissed off at you because you stepped on my foot. But you DO have a beard and that's a useful way to point you out.

I'm wondering how far your philosophy spans. Is it okay to mention (or notice!) gender? Is it okay for me to say, "Go ask that lady the way to the park"? Or do I have to say, "Go ask that person the way to the park"? If I say "person" but secretly notice that the person is female, am I somehow bad?

Is it okay for a black person to point out other black people? I have a African American friend who I once heard say, "You see that black guy over there?" Should I have called him out for being racist?

I'm also seeing a potential for comedy here:

A: Quick, the train is about to leave! Go ask that ... um ... person if it's going North or South.
B: Which person?
A: The... the one with the hat!
B: Which one with the hat? There are three guys wearing hats.
A: Um... um... um... shit! The tall one (this: is it okay to describe someone as tall?)
B: The tall man or the tall woman.
A: Er... I prefer to think of people as people.
B: For God's sake, the train is leaving! WHICH PERSON SHOULD I ASK. Point at him or something!
A: Um... I can't. It's not polite to point.
B: Okay. Look. There are two tall guys over there. Is it one of them?
A: Yes.
B: Is it the white guy or the black guy?
A: Um....

Personally, I think there's something racist about being as color blind as you're advocating. I'm not saying you're racist. I'm sure you're not. But I think pretending that skin color doesn't exist -- or that you don't notice it -- is part of the problem, not part of the solution. I have no problem with someone referring to me as a white guy. True, I haven't been persecuted due to my skin color. But that's the point. We need to work to make "that black guy" as neutral as "that white guy" -- not work to quell obvious observations.

And -- though this won't make me popular around here, I guess -- no human (male, female, black or white) is fully a person to me if he's just a stranger on the subway. He's something between a person and an object. That doesn't mean I treat him badly. It just means I know nothing about him. There's NOTHING I can use to refer to him that's not superficial. Now, if Frank is my boss or my therapist, it IS racist for me to refer to him as "my black therapist" or "my black boss." But the guy on the subway is just a guy. And maybe he's a black guy. Noticing that doesn't make me racist. It just means I have eyes.
posted by grumblebee at 6:24 AM on September 22, 2008 [1 favorite]

You're both absolutely right, that you can make a comment about gender/race/sexual orientation and, said without prejudice, there's no prejudice.

You're right that there's a big difference between "That fucking bitch" and "That fucking black bitch."

I'm seeing that you're missing the forest for the trees in my comment, which is generally that racial descriptions just aren't necessary. I realize that we're all in a big hurry wherever we go, and that keystrokes in our textmessages are time, and that time is money---but I also think there's a beauty in descriptive language.

You're right that being racially neutral means that "the black guy" has no more meaning than "the white guy", but then I wouldn't say that either. I also don't think that, given most circumstances of describing folks on the subway, that you would generally identify the persons skin tone if it was the same as your own. Would you really be as likely to say "The skinny white kid with the Pantera shirt over there" as you would "The black lady with the kickin purse?" I would doubt it, because in that case the Pantera shirt is a more obvious identifier than skin color.

I also believe that there's a racial undercurrent in America. I believe that most of us don't feel any shred of racism, and don't act in any way that identifies us as such. I also believe that, for whatever reason, saying "the black one" or "the puerto rican one" or "that latina", and here's the part where you call me racist and miss that I'm talking about the general public, there's a voice tone and somewhere deep inside there's a teeny pang of something when that word is said. Not anger, not hate, but something that says "oh."

Inside my head this is how I see lots of folks having this conversation in two different ways, tell me if you agree:

(On the phone w/ best friend)
Person 1 (on the subway): Man this lady here has the most fantastic handbag.
Person 2: What does it look like?
Person 1: It's sparkly and the deepest indigio. I can't tell if it's satin or velour. It's like a clutch only it has a strap.
Person 2: What, really?
Person 1: Yes, I've never seen anything like it, I wonder where she got it?
Person 2: Why don't you ask her?
Person 1: Nah, that's ok. (Thinking or saying, "She's black", or "...an alien" or "...different from me and I'm scared of her.")

versus

Person 1: This black lady has the most fantastic handbag.
Person 2: What does it look like?
Person 1: It's sparkly and the deepest indigo, I can't tell if it's satin or velour. It's like a clutch only it has a strap.
Person 2: What, really?
Person 1: I've never seen anything like it, I wonder where she got it?
Person 2: Yea, I don't know. (or, the kicker, and I've heard this one) I'm not sure, but there's a black lady in my office, I'll ask her.


And I'll say again that if you're saying things about people that you wouldn't say to their face, then you're saying things you shouldn't say. Karma be damned, it's called The Golden Rule for a reason. If a thought pops into your head about the way someone looks, or smells, or behaves, or whatever, ask yourself this question: "If I said that to that person, would I get popped in the nose or make him/her cry?" If the answer to either is YES, spend the time you would have used criticizing that person to criticize yourself for feeling worthy of passing judgement.

No, I don't think you're racist. I also don't believe that racism has to mean lynchings and burning crosses either.

Regardless, none of these debates have anything to do with Trisomy, and I encourage either of you to contact me via MeFiMail to continue chatting, if you feel the need to do so.
posted by TomMelee at 7:21 AM on September 22, 2008

TomMelee, I suspect all of us are coming into this discussion with good motives, but I have big problems with two things you wrote:

1.
I'm seeing that you're missing the forest for the trees in my comment, which is generally that racial descriptions just aren't necessary.

2.
if you're saying things about people that you wouldn't say to their face, then you're saying things you shouldn't say.

As someone who would love to live in a world without racism, I feel your approach ADDS to the problem. I'm sure that seems upside-down to you. So -- again -- I don't think you're racist. I think we both identify a problem and we'd both like to solve the problem. I believe your approach is misguided (though well meaning) and risks making matters worse.

Yes, racial descriptions aren't necessary. There's always another way to describe someone. But even if there's an easier way to describe someone, I still say it's okay -- and even sometimes a good thing -- to describe someone by skin color.

It's only bad to describe someone by skin color if skin color is bad. Almost everyone agrees that huge zits are bad, so naturally I'm not going to say (if there's any chance I might be overheard by the be-zitted person) "that lady with the huge zit on her nose." But I am going to say "that lady," because it's not a bad thing to be female. Similarly, it's not a bad thing to be black, so I should be able to say "that black guy."

Yes, brown skin HAS been stigmatized in this country. And that's a terrible thing. But the answer is not make skin color taboo, as if it's shameful. THAT is worsening the problem.

I'm not entirely sure I understand your comment about seeing a black person and thinking "oh." Oh, what? Most of the people in my neighborhood are black. When I see them, I don't think oh anything. I take it that by "oh," you mean some fleetingly negative or racist thought. Maybe some people do have those thoughts, but not saying "black guy" won't stop them. Why do you privilege speech? Why is to worse to say something than to think it?

Anyway, you can't accurately gauge what thoughts people have deep down -- unless you're a mind reader. Maybe my racism is so deeply buried I can't see it, but to the best of my knowledge, I'm perfectly capable of thinking or saying "that black guy" with no "oh." It really is the same as "that bearded guy." The guy IS bearded. The guy IS black. What's the big deal? It may be a big deal if you were raised in a racist family (I wasn't). It may be a big deal if black people are a novelty for you. They aren't for me. I live in a mostly-black neighborhood. I have black friends and black co-workers. The most I can say about black skin is that it's boring (like beards). (I HAVE described someone in my neighborhood as "that white guy" and I'm sure I've been described that way, because where I live, white is a novelty.)

if you're saying things about people that you wouldn't say to their face, then you're saying things you shouldn't say.

If Bill knows he respects people of all colors, but he occasionally has the urge (or the perceived need) to say "that black guy," and you tell him he's bad for saying it (for even thinking it!), you're unnecessarily stifling him. That sort of censorship leads to resentment. It worsens the problem.

I'm actually trying really really hard to understand why it's bad to say "that black guy" when I'm -- say -- alone with my wife. Here are some possible reasons:

1. My wife might think I'm racist.
I don't care (at least not in this discussion). If my concern is about how I come across, then that's a personal ego issue. It's not about whether or not I'm doing harm to the guy I'm talking about.

2. I might somehow make my wife think that racism is an okay attitude.
That infantilizes her. She's an adult. She makes up her own mind about what's okay.

3. I might somehow hurt the feelings of the guy I'm talking about.
Impossible. He's not there.

4. I might make myself more racist.
Except I'm already having the thought. I see no evidence that thinking thinks is less potent than saying them. So what's the difference.

5. I'm adding "racist energy" to the world.
That's magical thinking. I reject it. If you believe in it, we have no basis for discussion.

6. There's a sort of rule that liberal white people follow in which they pretend not to notice skin color. By doing this, they all feel good about their attitude towards racism. By violating the rule, I'm flouting a social convention. In a sense, I'm saying to the group that I don't care about its customs.
I might take this seriously depending on who I'm talking to. I know my wife doesn't care about such social conventions, so I'm not going offend her.

One of the great things about friends is that when you're around them you can let your hair down. Here's how the Golden Rule works with me: If I have a huge blemish on my face, I would appreciate it if people don't bother me about it all day. I wouldn't bother them about something like that.

On the other hand, I realize that they DO have to look at my face all day. I don't have a problem with them going home and saying to their spouses, "Man, this guy at work has a terrible skin condition!"

If I DID have a problem with that, I'd have a problem with their thoughts, too. What I really want is for people to not even notice my skin condition. I don't want them to notice it yet keep quiet about it. The only reason it bothers me that they might talk about it is that means that they've noticed it. But they're going to notice it whether they talk about it or not. So, in the end, what difference does it make if they talk about it.

If they talk about it in private, when I'm not around, it will allow them to blow off steam. It may make it easier for them to be around me during the day.

Here's where I think your stance is most problematic: Imagine I wake up one morning and I realize that I am racist. I'm not proud of it. I think racism is terrible. Yet I realize that I have racist thoughts.

Now, imagine that I confess to them in public. Imagine I say, "Hey, I'm having this problem. I don't want to be racist. I don't like racist people. But I have to admit that I sometimes have negative thoughts about black people -- just because they are black."

I don't foresee a happy ending. I've tried this -- not with racism, but with other prejudices that I have -- and it didn't go well. I was basically told that I was a bad, bad person. And the upshot is that I didn't get any help. I just went into the closet. No one admits he voted for Nixon; no one admits, "You know, if I had lived in Germany back then, I might have been a Nazi." Racists and Nazis are evil ogres, not regular people like us. As long as we have that attitude, the problems will persist. Problems don't get solved by silencing. Politeness has it's place, but when you're around close friends, you need to be able to open up.


Regardless, none of these debates have anything to do with Trisomy, and I encourage either of you to contact me via MeFiMail to continue chatting, if you feel the need to do so.

Respectfully, that's not cricket!

I'm sure you didn't do this on purpose, but you've basically said, "I disagree with you, and I'm going to explain why in a public forum. And -- giving myself the last word -- if you have anything more to say about it, reply to me in private."

The correct thing to do is to MeMail me or Evangeline and say, "Hi. I didn't want to clutter up the thread, so I'm writing to you..." I've done that a zillion times. Yes, it does give the other guy the (public) last word. But if I want to play fair, that's the price I have to pay.
posted by grumblebee at 8:20 AM on September 22, 2008 [2 favorites]

I think a big part of the issue here is not so much that we should not notice skin color, disabilities or other physical attributes but that sometimes when people point out such differences it is irrelevant and all it does is imply that race or whatever attribute we're talking about is.

For example, I remember telling my friend a story about getting harassed by a guy on the street. I didn't mention his race. At the end, she said, "was he black?" And I said, "why do you ask?" (in fact, he was white). She got very defensive and talked about being "just curious," but all that information seemed to me to be important for was to confirm her bias and perpetuate a stereotype.

Similarly, I sometimes hear people tell stories, starting with something like "I work with this black woman and X, Y, Z...." and I wait for the part where race is relevant, but it's not.

there's a big difference between "That fucking bitch" and "That fucking black bitch."

I agree, and I think the reason is that inserting race in there implies that it is part of the insult. I have definitely heard "white bitch" and parsed it as a pretty deliberate "I am angry at you, and part of what makes you deserving of my anger is that you are different from me in this way."

As far as describing someone for identification, I don't find that as offensive, usually, as sometmes talking AROUND race is conspicuous and self-conscious. Which think that's part of what Grumblebee is talking about.

Person 1: That guy over there is really hot.
Person 2: Which one?
1: The tall Asian guy
posted by Pax at 2:06 PM on September 22, 2008 [1 favorite]

The line between neutral and icky with these identifiers often comes down to relevance. It's not necessarily racist to use race to describe someone, and it's not necessarily disrespectful to describe someone via an obvious impairment, either. One must not go into comedy routines to avoid the PC police. However, usages to reconsider:

If a stereotype is being cited (like in Pax's example of describing being harassed and race getting injected), or it's completely irrelevant to the point of ludicrousness (the old sexist "woman doctor/male nurse" thing comes to mind). And most notably (but also the fuzziest line) when you would not cite this category of trait except to define this person as identifiably "Other." If you wouldn't say "some white dude on the bus was up in my personal space in a creepy way" then you might want to think about why you think that the fact that it was a black guy is relevant, unless you're giving a police report. It's not terribly uncommon to come into contact with people who, by their affect or speech, are disabled in some way, so let's try to notice when such people are NOT hard to understand, too. It's too easy to reach for the "other" descriptions when the situation is negative, but never bother to notice them when the situation is positive.
posted by desuetude at 8:10 PM on September 22, 2008 [1 favorite]