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May 1st, 2012
12:42 am - Double Standards This is my post for Blogging Against Disablism Day, in which I have been posting since 2006. Please note that in the intervening years of 2007, 2008, 2009, 2010, and 2011, neither my Microsoft spellchecker nor the Livejournal spellchecker has learned that Ablism, Ableism, Disablism or Disableism are words. Please also note that I use ablism and disablism more or less interchangeably.
The thing about disablism is that almost no one wakes up in the morning and thinks, “I’m going to discriminate against people with disabilities today!” Discrimination is sometimes blatent, but often subtle, so subtle that it is built into routines and expectations and policies until it seems like the way things have to be, rather than the way the non-disabled majority has designed things to be. Disabilism is so pervasive, and so interwoven into just about everything, that it can take time to recognize the patterns in events. Ablism occurs whenever there is an assumption, implicit or explicit, that non-disability is inherently better than disability. Ablism goes from inconvenient to dangerous when this assumption leads to the idea that a disabled life is less worth living than a non-disabled one.
I am not the first person to point out any of these disablist double standards. Sadly, perhaps because I tend to ignore a lot of media, it was other people’s analyses that drew my attention to them in the first place. What I haven’t seen are as many overarching attempts to put all the double standards together in one place, to really stare at them and realize just how clearly they all tie in together. Some get talked about more in physical disability spaces, some in autistic spaces, some in parent spaces and some in disability community spaces. But it’s the same ablism that underlies all three.
( Please note that I am going to be addressing some serious and potentially triggering topics, including abortion, suicide and murder. ) There is a lot of education I want to do about disability, and a lot of conversations I would like to be having, at work and elsewhere. I am trying to address subtle ablism in health care. I am trying to address barrier for health care providers with disabilities. I am trying to create a brighter and more accepting future for all my little patients with developmental disabilities.
But before we can truly tackle the subtle acts of ablism, we need to expose the blatant ones. These isolated stories tell a bigger one, one of a society that tells us that disabled lives are worth less. And the belief that some lives are worth less leads to the ending of those lives. It’s a double standard. It’s life and death. It’s ablism.
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March 11th, 2012
10:09 pm - Grocery store
Things I like the checker and bagger to do for me at the grocery store 1) Scan my items through the zebra code scanner thing 2) Weigh and enter the codes for my produce 3) Place my items in the tote bags I bring (I put a bag on the conveyer, followed by the items I want in it, then another bag and its items) or let me bag them. I have the cold foods, the produce and the non-perishables together for a reason, and the heavier stuff arranged to put in below the compressible stuff. And I really do have everything arranged so the contents will fit! 4) BONUS Leave the conveyer belt turned off until I get my items arranged on it - they get all upset if I ask them to do this even if there's no one behind me so I don't ask but it's lovely when they do
Things I do not like the checker or bagger to do for me at the grocery store 1) Walk down the aisle and start taking items out of my cart and putting them onto the conveyer for me 2) Ask me if I found everything I need - if I didn't, I'm not going looking for it now that I'm checking out but I feel rude saying no 3) Let all my items and tote bags go through and then start putting things in random bags 4) Grab my cart that I am holding onto or leaning against and try to insist on taking it out for me.
I've tried finding a line without a bagger but one generally appears after I've started unloading my cart. I've tried getting in a busy line, hoping that the bagger will walk out with someone else in line and a new one won't appear until I'm done. Also that's my best chance of getting things unpacked before the conveyer starts moving. I must be the only shopper in the world casing the lines for the longest one. I suppose my other option is just to let them bag things however and then redo it myself afterwards.
After my weekly shoping trip, I miss the rude north where there were lots of cart return stations in the parking lot rather than just one, and no one tries to grab my cart out of my hands to be polite and take it out for me. On the other hand, they give me a harder time about bringing my own tote bags, but at least I don't have to worry about having the cart pulled away when I'm holding onto it. Sometimes at least they ask rather than grab it, but I still usually have to refuse several times before I can get away.
Going through the store for milk and apples and Cheerios should not involve quite this degree of hypervigilance.
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January 24th, 2012
10:28 pm - Shall we dance?
Apparently I'm in a crowdsourcing mood this week:
Can anyone tell me how to phrase 1.5 English Pousette in waltz time in 8 bars? (1.5 in that it is progressive, unlike a full English Pousette which I am given to understand is non-progressive, unlike a Scottish Quicktime Pousette which is progressive. . . ) If it makes a difference, the dance is being done in a circle and the Pousette ends facing the next couple around the circle.
I kept arriving 1.5-2 bars too early and killed time. No one at English could phrase it beyond "you have 8 bars." That was the more helpful advice. The less helpful advice was to not worry about it and have fun. I tend to have fun if I have some idea where I'm going. Otherwise I freeze or trip over my feet. I find that rather less fun.
This is the year I've decided to make some headway in English dance. Last year I attended a few English dances and an introductory English class. This is following years and years of people telling me I could just figure it out because it was like Scottish only walking. Rather than this getting me to walk in the right direction, it generally gets me to freeze in place trying to figure out where everyone else is walking. So after a few failed English-Scottish balls, I put my foot down and said I'd wait until I could actually learn it. There is a local English dance which meets monthly and I've made it most months since moving here. I've finally had someone tell me how to set. I've gotten comfortable with several specific longways dances. I've reached the conclusion that circle dances and mixers may be forever beyond me. (I'd reached that conclusion about Gay Gorden's years ago.)
About a quarter of English dance figures seem pretty much the same as Scottish. Rights and Lefts, for example. About a quarter are about the same but are called something different. I need a translator for my brain, not my feet or body. Hay means reel, so a double crossover mirrorwise hay is no big deal. There are some unique things to English, like a gypsy and siding. But my real bug-a-bear are the things which have the same name but mean something a little different. Or a lot different.
It reminds me of what my French teacher used to call "false friends" (faux amis) Those are words in a language you are learning which sound or look like words in your own language, so you think you know what they mean. And then you discover they don't mean anything like the same thing. For example, the Spanish word "embarazar" has nothing to do with being embarrassed and everything to do with being pregnant. I should say, it has nothing to do with being embarrassed until the English speaker discovers what it really means mid-conversation. Then everyone becomes embarrassed. These dance terms are also proving to be false friends. They say Pousette and it sounds oh so familiar and comforting. Then I see what is going on, and I realize they and I don't mean the same thing with the same word. I've now learned Ladies Chain in Scottish, Square and English. If there's another version, I don't want to hear it!
On the less confused and frustrated side, this is the first chance I've had to do Scottish regulalry since 1998. The class here was described last week as a bit One Room School House, which is different from my core experience dancing on a college campus where the dance semester had a predictable pattern. We have new dancers almost every week. We have demonstration team level dancers every week. We have people in the middle every week. It's really perfect for me, where I am right now, which is needing a place to dance and build stamina and push my own technique so that I can be ready for a true experienced class in a few years. I'm pretty good at drilling my own technique. They do throw in a weekly dance for the experience folk. After a 1995 disaster, I've finally learned The Knot!
One of the few good things about moving every few years (and I'm hard put to find good things in this) is getting to learn new local favorites. I "grew up" with Ian Powrie and De'il Among the Tailors and John McAlpin. The class here is fond of Catch the Wind and this 5 couple set farce called Balgeddie. As we tend to number 5 couples, we do Balgeddie a lot. If we don't have new folks, it's essentially a house dance. It's fun and lively and I almost think I know where I'm going, but if I was to predict that a cautious dancing 10-year old would only know one dance without a briefing, Balgeddie would not be my guess. Yet there it is. I've also become enamored with a dance called Cranberry Tart. Only I would leave Cape Cod for the South and THEN learn a cranberry dance. If you're a Scottish dancer and haven't yet encountered it, I heartily recommend changing that situation. It has TWO reels of three and yet I still like it, which should tell you something. It starts with a meanwhile figure with the woman following her partner by two bars, a bit like a quicktime John McAlpin meanwhile and then ends with the reels.
Tonight I learned the Purple Heather Jig. So now I know two dances based on the White Heather Jig - the Black Leather and the Purple Heather. The Purple Heather is done to the same music as the White Heather, and Purple:White as Rigs of Corn:Corn Rigs. The first and fourth couple turn and cast in, everyone reels, corner partner is done with all 4 couples at once, everyone reels some more and then they cast back out. Apparently the March dance weekend in Atlanta will brief White Heather, start the music and each set to its own which will be danced. Chaos may ensue.
I know chaos often ensues dancing. The experienced bunch got so mixed up tonight that we had a reel of 5 and a reel of 3 and someone asked me mid-circle "who are you?" Someone cast instead of setting and someone forgot to reel and someone forgot who was a Man even though we have unequivocal "MAN" tags worn about the neck. Someone turned their partner's corner. The teacher omitted two bars in the briefing. I screwed up. The whole set screwed up. We had to stop the music and rearrange folks. We learned. We laughed. We had fun. I hope the new folks come back.
I just have more fun when I know what it is I'm aiming to do.
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September 4th, 2011
02:37 pm - No, Ma'am
This is the most surprising linguistic phenomenon I have encountered since moving to the South. I’m not talking about the phenomenon of calling me “Ma’am,” which happened rarely in Philadelphia and West Virginia, and frequently here in South Carolina. That’s something I expect at the grocery store and appreciate because I’m finally a “Ma’am” rather than a “Miss,” and something I don’t expect from my patients’ families but get anyway and it does make me vaguely uncomfortable but doesn’t surprise me. Many families answer my close-ended questions with “Yes, Ma’am” and “No, Ma’am” (and my male colleagues with “Yes, Sir” and “No, Sir.” It makes me more uncomfortable when the speaker is non-white, presumably because I worry a lot about the baggage in the South in terms of who historically called whom Sir and Ma’am, piled on top of the perceived difference in status between a physician and many parents. But that’s me, and my comfort, and all I can think to do about it is to treat my families with equal respect, which is something I should be doing anyway.
No, what surprises me are the number of parents who say “No Sir” and “No Ma’am” TO their children, generally very young children. The 18 month old who has discovered how to open the trashcan and is reaching in is whisked away by her father, saying “No, Ma’am! No, Ma’am! Dirty!” The two year old is firmly told, “No, Sir! Do not bite!” by his mother as she removes his mouth from her arm. And so on, with the toddler who is reaching for the door handle or light switch, and the preschooler who is trying to eat crayons. There doesn’t seem to be any racial distribution to the use of “sir” and “ma’am” towards their children, although I suspect there is a socioeconomic one. And I’ve never heard any adult say “Yes, Sir” or “Yes, Ma’am” to a child.
One language milestone we measure in young children is their ability to understand the word “no.” Typically, by around a year, most babies will understand “no” when spoken by a parent, and will at least momentarily pause before resuming a crawling pursuit of an electric cord or a fast grab at mama’s earrings. Understanding “no,” and the word “no” being an actual deterrent of behavior are two separate things, but it occurs to me that neither develops if a baby never hears “No!” couple with actions that demonstrates that the adult wants an action to stop.
Some of our kids hear “no!” a lot, especially some of our children with unusually active behaviors for their age, and I’ve worked with older children who I suspect are told “no” ten times more often than they are told anything else, let alone “yes” or words of praise. “No” is likely to lose effectiveness under such circumstances, and it’s a challenge, although a worthwhile one, for parents, doctors and teachers to learn to say “Walk in the hallway” rather than “No running!”
But some of our children don’t seem to be hearing “No!” at all. I asked one father if his toddler understood “no,” and he said he wasn’t sure. But, he continued, she definitely understood “No, Ma’am!” She clearly responded to the sharp tone behind the words used by her parents, and it was brought out as a verbal marker of “I mean it!” following some general ineffectual “no’s” called from the other side of the room. I decided that she met that milestone, and that whoever wrote the language chart had never lived in South Carolina.
Has anyone else, in the American South or otherwise, encountered the use of “sir” and “ma’am” directed from adults to children? Is it part of an underlying philosophy that a bald “yes” or “no” is so inherently rude that they should not be used or modeled at any cost? (And by extension, am I being so unthinkably rude myself by saying plainly “yes” and “no” that only my clear Yankee accent excuses me as ignorant rather than arrogant?) Or is it merely a way of applying gradations to the negative, from “no” to “No!” to “No Ma’am!” until the child knows that time-out (or worse) will inevitably follow?
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May 17th, 2011
08:40 pm - In case anyone missed the memo (did I send a memo?)
I'm moving to South Carolina.
In three weeks.
Cue chaos.
My new snail mail address will be available upon request. It's in South Carolina.
My cell phone number is not changing, for those who have the current number. Please be advised that I still can't figure out how to check voice mail on it. I do know how to check for missed calls (so if you call, let it be missed) but I don't do so every day. I also don't keep it on me at work or while driving. It's a reliable way to reach me if I'm on a train, plane or automobile en route to meet you and I'm expecting a call, but not terribly reliable otherwise. Well, maybe not even on the actual plane, come to think. But at airports and such.
My e-mail addresses are not changing, or at least, while I'm likely to get a new work one, the current social ones will remain. Mawrters can use Firstname.Lastname @ alumnae.youknowwhere.edu, although a recent message sent to that address never arrived. (My test message did, however.) Other people who know my name can use firstnamelastname @ gmail. The livejournal message system and Nightengalesknd @ gmail should also find me, as would leaving a comment on this or any other entry. Sooner or later.
The current plan is for my furniture to be picked up in MA on June 6th, and for my mother, me and my new-to-me car-to-be (a story in itself) to leave MA that same day under separate cover. We expect the drive to take 3 days, followed by several days camping out in SC awaiting the furniture, which is expected to arrive on June 12 or 13th, followed by several days of fervent unpacking of things, most of which were packed a year ago. Expect sporadic smoke signals during that interval and for the subsequent week, by which time I should have a local ISP and have the apt to myself, thus being much more communicado.
Training at work begins June 22, with work-work beginning, as with every other medical education program nationwide, on July first.
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May 5th, 2011
09:24 pm - Independence This may or may not make it into this year’s Blogging Against Disablism Day because it’s late, because I missed the announcements and forgot it was early May. Regardless, it’s something I’ve been saying in bits and pieces in varying ways for a long time, and wanted to say in writing, all at once.
There’s a lot of talk about independence and disability, and if it’s independence versus interdependence we should be using for a goal, anyway, and about coping with the loss of independence. But generally, many people including me, like to be independent and consider their own independence important to them. Disability can threaten a person’s ability to do some things independently and to think of oneself, and be thought of as an independent person. So here’s what I think.
Sometimes, it’s an independent act to do it yourself, even if it’s more time consuming or difficult than it used to be, or in the way that most people can do it.
Sometimes, it’s an independent act to do it yourself, even though it looks awkward or unconventional to an observer. This includes observing strangers and observing loved ones and observing professionals.
Sometimes, it’s an independent act to decide that it’s not worth the spoons doing it at all right now, and you’ll find another way or do it later.
Sometimes, it’s an independent act to ask for help doing something you can’t do at all. It’s an independent act to chose who to ask for help, and when, and under what circumstances, and to specify when and how you need the help.
Sometimes it’s also an independent act to ask for help doing something you can do, but can’t do well or quickly in a time when speed or aesthetic result matters.
Sometimes it’s even an independent act to ask someone else to do something entirely, if you can’t do it, or can’t do it well enough or quickly enough for the particular circumstance, or even if you need to save spoons and energy for some other non-negotiable (or even just fun) task or event later.
It’s an independent act to decline help, when offered, if it’s not needed, or even if it could be useful but isn’t desired for whatever reason at that time.
It’s an independent act to accept help, when offered, if it would be useful, and to then specify the best way to apply that help.
In short, asking for and accepting help doesn’t necessarily imply that a person has lost independence. Sometimes, recognizing help would be useful, asking for it or accepting it, and directing the best application, can be itself an independent act, and in fact the most independent act possible under the circumstance.
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December 25th, 2010
03:06 pm - Why, sure, I'm a billiard player
Salesmanship is one of those things for which I have no talent whatsoever. The whole idea seems based on telling people what they want, rather than trying to provide them with what they want. As a consumer, I generally know what I want, state my wants clearly, and go looking for them. I often care little for things which salespeople tell me I should want, often to the point where I call "bugs" the very aspects which they dub "features." Rare is the salesperson who listens to what I want and helps me find it, and those are the salespeople which invariably get my business whenever possible. Of course, in mass marketing materials, there isn't a prayer of finding the advertised features matching my wants, and often they directly contradict each other.
I've started some casual looking, online, at the apartment situation in Greenville, South Carolina, in preparation for my trip next week. The good news is, unlike some places I have lived, there seem to be multiple apartment options, and not mainly house options or rooms in house options. I spent several frustrating days being told by various realtors in West Virginia that townhouses were better than apartments. This is after I clearly and unequivocally stated my interest in apartments, either ground floor or in a building with an elevator. By definition, any townhouse which comes with stairs, is not better.
Things which I want in an apartment include proximity to the hospital and travel that avoids major highways, ground floor or elevator access, a dishwasher and a washer/drier hookup.
So far I have found one building with an elevator, and two which mention accessible units. Of course, most places which advertise accessible units are part of subsidized housing for which I do not otherwise qualify, as was also the case in West Virginia. I have also found several with dishwashers and washer/drier hookups. So there is hope in finding an apartment which has what I want.
But overall, the bugs- I mean features - include proximity to major highways, patios, pools (including the only saltwater pool in Greenville and several described as "sparkling",) a fully stocked fish pond, barbecue grills, fitness center, "health center," tennis courts, sand volleyball courts, indoor basketball and racquetball court, jogging path, permission to house large pets, refrigerator with ice machine, 18 foot ceilings, scenic views, stainless steel appliances, all white kitchen cabinetry, a clothes care center (whatever that is - it seems distinct from a laundry) and a billiard room.
Billiard room. Why, sure, I'm a billiard player. . .
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December 17th, 2010
11:00 am - Hogmanay 2010-2011
1) Anyone else going from MA?
2) Any couch/floor spaces not yet spoken for which I could easily reach by SEPTA?
Current thinking is to arrive via rail, likely on the 30th, and then depart via airplane for South Carolinia, likely on the 2nd or 3rd.
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December 14th, 2010
05:51 pm - Which half?
For Thanksgiving, I offered to make a quick bread, in addition to our usual stuffing and potato kugel. I love biscuits, but my mother prefers fruit breads, and suggested a recipe she used to make when I was little. The recipe happens to be in her baby food cookbook, so I put together a loaf of date bread, and then settled down to read the rest of the book. I don’t remember reading this one before, and I’m generally reading some cookbook or other. Recently I’ve been going through the cookbooks I inherited from my great aunt, a home economist, whose collection ranged from Pennsylvania Dutch to crock pot cookery, to low-fat everything to community fundraiser cookbooks from everywhere she’s lived. So reading cookbooks, even dated cookbooks, is nothing new to me. I’ve read through the years when half a pound of butter (or lard, which of course I’d never use) goes into everything, and I’ve read through the years when margarine was touted as the be-all-and-end-all of human existence. I’ve read the years before convenience foods existed, the years when convenience foods were the cornerstone of every dish, and the recent years rebelling from the convenience era.
But as a pediatrician, I found the baby food cook book rather tough going.
It was written in 1973, and my mother got it in 1976, just before I was born. It sets out to be all scientific-like, with a forward by a pediatrician praising all the nutritional information contained therein, which follows the recommendation of leading and respected pediatricians. It’s chock full of nutritional advice, with a chapter on vitamins from A to Zinc, warnings about home-canned foods, recommendations against loading foods up with sugars. It does recommend starting solids one at a time, for a couple of days before introducing another food, to check for allergies. Those are things I agree with.
But then there’s the little matter of when it says to start solids. Cereal and yogurt at 4 weeks. Fruit at 2 months. Veggies at 3 months. My little pediatrician’s heart just about stopped. I’ve been taught, one might say, indoctrinated, never to start solids until 4 months. Some research suggests waiting until 6 months to decrease the risk of food allergies, other research counters that delaying past 4 months is only beneficial if there is a family history of allergy, and some suggest that 4 months is sufficient in all cases. However, except for some uses of juice and cereal for medical reasons, nothing besides breastmilk or formula is advised until four months at the earliest. I usually bring this up at the 2 month visit, because if I wait until the 4 month visit, the cat is often already out of the bag. As I tell many young mothers, the two areas in which I’m most likely to disagree with their main source of baby information – their own mothers and grandmothers – is in delaying solids and having the baby sleep on his or her back.
Then there’s the little matter of the honey, called for in more than one recipe. Current advice is to never give honey to a baby under one year. Honey can contain botulism spores, and young infants don’t make enough acid to kill the spores. Botulism is rare, but little babies can get extremely sick from it, like ventilator sick. Now, I know that they knew about botulism in 1973, because the book includes warnings about home canned foods, but evidently the connection between honey and infant botulism had not yet been made. (I later consulted Dr. Google who dates the discovery to 1976, several years after the book went to press.)
And finally, there’s the option of skim milk for babies. Current thinking is that skim milk is a really bad idea for babies. In fact, plain cows milk is not recommended until twelve months. Instead, young babies are supposed to get their main nutrition in the first year from either breast milk or formula, both of which are higher calorie than cows milk and have a different sugar makeup. After one year, current advice is to switch to full-fat cows milk. See, babies brains are still forming, and the fat in the milk is recommended to form a good myelin coat of insulation on those developing nerve cells. So until age 2, babies need that extra bit of fat. Of course, the research for this was developed before high-fat foods became a mainstay of many toddler diets. It may be that for toddlers eating Cheetos and McDonalds frequently, skim or 2% milk may be the better option, but for many reasons, the AAP has not yet released recommendations advocating a high Cheeto or McDonalds diet for this age range. I might add here that every peds resident in West Virginia has encountered Mountain Dew in the bottle at least once, and I once had to recommend that a family whose toddler came to me for pre-anesthesia clearance for multiple dental cavities might at least switch to diet Dr. Pepper in the little guy’s sippy cup.
So the recommendations are in flux. The research is in flux. I can’t fault a book written in 1973 for not being all up-to-date with the American Academy of Pediatrics standards, considering that the standards themselves are a moving target.
I remember being forced to bring science current events to school each week in 11th grade. It was an assignment I hated, preferring to get my schooling from nice safe textbooks, preferably written in dead languages, but I dutifully read Discover and listened to the science corner on the news for the year. This was 1992, the year that butter was out and margarine was the magic cure-all, and each night brought a fresh round of research and recommendations that we the public needed to follow without delay. Around April, tired of the ever-changing sound bites, I glibly predicted that in my lifetime the evening news would excitedly report that oat bran causes cancer, cholesterol will cure AIDS, and exercise is lethal.
I’m still waiting on the first, and the closest they’ve come on the second is that many AIDS medications can profoundly impact cholesterol metabolism, but about a year later I was finally diagnosed with exercise induced asthma. It’s admittedly a stretch, but I felt vindicated.
Medical advances and advice are based on the most recent research and a reasonable degree of conjecture. One of my medical school professors, a respected middle-aged family practitioner, told us that when he was in medical training, the belief was that elderly people needed to maintain a higher blood pressure to better perfuse the brain through arteries which may be hardened by atherosclerosis. He describes encounters with patients whose blood pressure is 180/90, numbers that make current day cardiologists run for their prescription pads, and having his attending physician pat the patient on the back. “Good job keeping that blood pressure up!” We all laughed, somewhat horror-struck, but I know that his attending were just as sure about their recommendations as ours were when advising the opposite. I know that the author of the baby food cookbook was proud to be presenting the most up-to-date information on infant nutrition in 1973, no matter how alarming some of the advice is by today’s standards. Reading some books, articles or cookbooks written in the past is probably vital to keeping me humble and putting into perspective any information or advice I give to my patients. Today’s poison may be tomorrow’s wonder-drug, or vice versa. We can only act on current available information, and need to remember that all we have is current available information.
There’s a story in the apocrypha about a medical school dean who told his students at orientation that half of what they are going to learn over the next four years is wrong. The problem is that we don’t yet know which half.
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October 8th, 2010
08:03 pm - SCD Poll
Grand chain for 3 couples in 8 bars:
1 bar 1 bar 2 bars, 1 bar 1 bar 2 bars
OR
1 1/3 bars 1 1/3 bars 1 1/3 bars 1 1/3 bars 1 1/3 bars 1 1/3 bars
Results likely to be skewed because I think the dancers who read my LJ all started dancing the same approximate place and time as I did. But I have a distinct memory of being taught one way (and emphatically NOT the other way) and have twice in the past few months encountered it being taught decidedly the other way. And my memory is 14 years old and I'm starting to doubt it.
Bonus points for anyone who can cite a written source, since I haven't got access to any at the moment.
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