The Diabetes Community got quite worked up this past week about a Miss Manners advice column appearing in newspapers all over the country, in which the etiquette expert's advice to a type 1 diabetic seemed to say that he ought to flee to the restroom when doing blood sugar checks on an airplane. You know... because that finger poke might be seen by others as a task more "properly done out of sight."
Hundreds from the D-Community responded with letters, emails, newspaper comments, and (at least three dozen) blog posts about how they felt the column slighted people with diabetes. Many dubbed advice-columnist Miss Manners "ignorant" or worse, and some called for an apology to our community.
We also spotted forum discussions on Children With Diabetes, Diabetes Daily and TuDiabetes, and the Glu community even posted a survey on the topic to which a majority of people responded that they are NOT embarrassed to check their BG in public.
Themes were pretty clear: You aren't one of us, you don't understand what our lives are like, and you have no right to tell us what we should or shouldn't do in public when it comes to D-management.
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Here's the thing: Miss Manners (real name, Judith Martin) isn't an outsider at all. Actually she's a D-Mom herself and is a part of our community.
Yes, the 75-year-old columnist and author is mom to 46-year old son Nicholas, a longtime T1 who was diagnosed in his 20s about two decades ago. And get this: he now shares the Miss Manners byline with his mom and sister, and actually penned this particular response about BG checks in public!
(What's more, he even created one of the first diabetes apps available on the iTunes store in mid-2008, a logging app called DiaMedic.)
And so, in an ironic spin, the Martins have a LOT of first-hand experience with type 1 diabetes and had that in mind when writing the answer that angered so many PWDs.
We were pleased to have the opportunity for a phone conversation with Mrs. Martin and Nicholas on Monday, and it became immediately clear that these two are anything but uninformed about this illness and the daily management practices that go with it. Sure, their views on public displays of health behavior may fall into more of an old-school category than many in the 21st Century DOC, but opinions vary just like diabetes... and while that may be the case here, it's certainly not due to a lack of understanding.
"Diabetes education is very close to my heart, and so it was quite shocking to see so many say that you don't know what it's like," Judith said. "Statistically, just the rate at which diabetes is being diagnosed, you should be cautious of saying something like that. Rashly assuming is a dangerous business."
Nick told us he injects with insulin pens and wears a Dexcom G4 CGM, and like many of us he checks his blood sugars multiple times a day. He even does that while traveling, often on airplanes, and no -- he doesn't hide his diabetes or run off to a restroom every time a BG check or pen injection is needed. Nick tells us that most of the time, he pokes his finger to get a reading without leaving his plane or train seat.
"I have many times taken a pen injection in total darkness with one hand by counting the clicks... and this was not to be discreet, but because it was the middle of the night and I was in a sailboat race," Nick said.
So, wait... how can a fellow PWD who's so well-versed in these D-practices advise people to hide their diabetes? To essentially be ashamed to do D-tasks in public?
Well, he doesn't. Neither does his mom. And in their view, they didn't say anything like that in the column the DOC has been widely criticizing.
Here's a reprint of that offending Q&A published in the Washington Post on Feb. 18:
DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic.
I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later.
Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane's lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies.
Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, "What is that man doing? Isn't that a bad thing?" (They're obviously thinking of their drug education classes.) Am I too self-conscious?
And the response:
GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.
The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.
You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.
Nick and Judith both say their intent was never to encourage people to tip-toe around their D-management or hide their health from public view. They say the answer was meant only to emphasize that discretion should always be taken; Nick says he always takes into consideration where he's at, who's around him, and whether under the particular circumstances, his BG checking might be out of place.
So the message they intended wasn't "you can't or shouldn't do this in public," but rather "there are moments when in deference to the people around you, you should think about taking certain health actions in private."
Even before chatting with them, from the first time I read the column, that's the meaning I understood from what was written. Personally, I was not offended. I see this very much like friends and fellow D-Bloggers Karen Graffeo at BitterSweet Diabetes and Scott at Rolling In the D, who both made a point of saying they were not angered by this.
Have I been ashamed of my health issues at times and wanted to hide? Yes, I have. And I've sometimes felt slighted and even discriminated against through the years.
But that's not what I took from this Miss Manners column -- despite the flurry of stuffy phrases like "properly done out of sight," "surreptitiously" "unrecognizable," "a pill taken at dinner," and "drawing the line at drawing blood."
And maybe that's the problem. Instead of clearly pointing out that there's nothing for PWDs to be ashamed of, the stuffy language used here inadvertently implied the opposite. So I think Miss Manners has got to share some of the blame here: Your intentions may have been pure, but the words used obviously struck the wrong tone and caused many to think you were urging Gentle Reader to hide his diabetes. No matter what you believe, the column hit a nerve and you can't just wash your hands of it and say "we didn't mean it that way."
In response, Nick says: "We would be saddened if (shame) was what people took away, since it is not what we wrote. We are never in favor of a diabetic compromising his or her health. We specifically say that emergencies take precedence. In non-emergency situations, there is no reason why consideration for others cannot also be practiced. That means, as we said, being discreet, which can be as simple as taking a glucose reading in a way that is not visible. For example, if you are at a restaurant table and can put the meter out of sight. And of course one should then also dispose of the test strip in a discreet manner. Having done this for decades, I can assure you that it can be done with little effort. You know that you get used to these things, there's a dexterity where you learn how to juggle all these devices and make them a part of your life."
btw, Nick seems to interpret the word "emergency" pretty loosely -- heck, he would even argue that needing to calibrate your CGM at a precise moment might fall into that category. Nick says that when he's traveling, he often tests his sugars from his seat and he's gotten adept at being able to test while he's walking through an airport or even waiting to board a plane -- all in public.
Both Nick and his mom say they were surprised by the D-Community response, especially those who lashed out with name-calling and assumptions. Of the hundreds of letters sent in, Nick said they noticed a majority seemed to indicate many people didn't even read the column. And many D-Parents chimed in about kids' practices, which they say is completely different and would be answered differently by them. About a third of the letters brought up emergency situations and how important blood sugar tests are, when the column clearly states that this advice isn't for emergencies, Nick said.
The mom and son pair noticed a theme in the responses: that many people seem to believe there's an irreconcilable conflict between being discreet in consideration of others and taking care of one's health in non-emergencies. But they don't see it that way.
"I know there are plenty of (non-diabetic) people who have severe reactions to needles and blood, and so if I can take care of myself and also be considerate to them, why wouldn't I?" Nick says.
On the flip side of this issue, Judith and Nick say they are concerned about what the DOC response says about us as community:
"Many of the responses we have received envision a world of violent extremes: Every aspect of diabetes care is an emergency and consideration for others will endanger the diabetic; every stranger who is uncomfortable at the sight of blood is an enemy. This is not a pleasant world to contemplate. Diabetes management is, as my first endocrinologist said, a lifetime occupation. That does not mean that it is our only defining characteristic or that we must live in a constant state of emergency. Were non-diabetics who know nothing about the disease to read some of the posted responses, they would conclude that diabetics live in a constant state of panic because the disease is unmanageable. That is not a good message for us to send to diabetics or non-diabetics."
He added: "Really, in some of the longer chains where people were commenting, there was this antagonizing attitude that was more like a closed ecosystem of people who were just reinforcing the mistaken understanding of what we wrote. If that's the attitude being displayed in public, then that's very damaging."
Judith started as a White House and embassy journalist and moved into film critique in the early 70s, before starting the Miss Manners column in 1978 that now appears three times a week in more than 200 publications online and in print. It's known for smart, politely sarcastic advice on any topic under the sun. Last Fall, Nick and his sister, Jacobina Martin, took on the role of splitting the writing of the Miss Manners column with their mother. They've been writing books and at times, they get very strong responses from readers. Even on more trivial topics like wearing white shoes after Labor Day, Judith jokes.
But this is actually the first time the Miss Manners column had ever addressed diabetes. Clearly, Judith and Nick don't think they wrote anything wrong or misguided. Will there be an apology or follow-up? Well, probably not based on the comments above.
But the two said they would welcome more questions to the Miss Manners column from the D-Community, not necessarily about this issue and topic, but more along the lines of how PWDs might respond to people who make rude or uninformed comments about diabetes. They'd welcome that, actually.
Hey -- this is a real D-advocacy opp here, Folks! If we're concerned about how the public at large views diabetes, this would be a great channel for awareness-raising.
To me, this whole Miss Manners debacle highlights that ever-present fuzzy line between "we are not ashamed by diabetes and wear it on our sleeves" and "diabetes doesn't define me." It's a fine line, between being viewed as sick and being healthy while living with diabetes.
We spend so much energy telling the world that we shouldn't be limited by our diabetes, and that we're just like anyone else. And yet, in the same breath we can voice incredible outrage when someone suggests we should be discreet instead of wearing that D on our sleeve for the world to see, whether the general public likes it or not. Because, you know, it's our health and we have that right. And they just don't understand.
Honestly, we can't have it both ways, Friends.
Sometimes, we are defined by our diabetes.
While at plenty of other times, we are a person who just happens to have diabetes.
It all comes down to balancing two sides of the same coin and deciding whether it's best, at that particular moment, to show the heads or tails side. Since the winners and losers aren't always clear, sometimes that's a tough call.
By popular demand, we're adding links to other DOC blog posts we've seen about this Miss Manners diabetes issue. Let us know if you know of any that aren't included. Thanks!
Dan Fleshler was one of the first over on TuDiabetes; Kim Vlasnik; Kerri Sparling; Jess at NachoBlog; Sara Nicastro; Carly at ChroniCarly; Kelly Kunik; Scott Strange, here and here; Illana; Tom Karlya; Stacey Simms; Rachel Kerstetter, here and here; Christel Marchand Aprigliano; Marie Smith; Leighann Calentine; Brianna; Cecilia; Kari; Scott Benner, here and here (and also on the Huffington Post); Jess Collins; Allison Nimlos; Karen Graffeo; Sarah Knotts; Cara Richardson; Hannah; Heidi; Christopher Snider; Scott E, here and here; Stephen Saul; Meri Schumacher; the Inspired By Isabella fam; and Victoria Cumbow.