Click for the Language and Diabetes - Wednesday 5/18 Link List.
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.
I’m an English professor, so my business is language. I spend a lot of my time teaching people how the words we use shape others’ perceptions of us and our message.
There are a lot of words that are associated with diabetes. Some are explicit, some implicit. I think that most of us are pretty good at avoiding the explicitly harmful words; it’s the implicit associations we might want to think about.
Well, most of us in the Diabetes Online Community are good at avoiding the explicitly hateful words. Sometimes it’s hard to think about implicit associations when other people are loudly calling your tribe fat, lazy, healthcare sponges, irresponsible, and more ignorant and terrible terms that belie a complete ignorance of the situation and a fear of being associated with it. I think fear goes a long way toward the assignation of moral value to health; if we’re “good,” we won’t get the nasty disease. It ties into our culture’s preoccupation with fairness in a distinctly unfair universe.
I wrote a post quite recently on why I’m not a big fan of the term “diabetes sufferer” - it rubs me the wrong way, because it gives diabetes precedence over me and suggests I’m only here to suffer through it. (In my post, I said I vastly preferred being called The Girl Who Lived, but I realize that’s a bit long and a copyright infringement.)
If I had to choose between the more normal terms of address, I prefer the idea of the term Person With Diabetes to diabetic, due to its deliberate attempt to put the person first. Sometimes, though, we tend to shorthand to save space, especially via Twitter - it’s easier to type “diabetic” than “Person with diabetes.” You can say PWD, but if the reader isn’t familiar with the lingo, you might lose your audience. On the other hand, this reduces a person to a single adjective, and adjective-as-noun, which in many cases cringeworthy.
My husband’s major involved linguistics, and from him I got the concept of prescriptivism vs. descriptivism. As I understand it, a prescriptivist believes that there are rules to language, and if they are violated, the communicator is wrong. A descriptivist believes that you cannot be wrong speaking your own language (writing is a bit of a different matter) and as long as your message is understood, you are correct. I’m more inclined to agree with the latter, though there are many rules of written grammar that I have a tendency to stick to rather slavishly (when you spend your life grading essays and see a lot of mangled phrases, that happens). On the other hand, when we choose words “incorrectly,” perhaps a basic meaning is getting communicated, and technically that means it’s not wrong, per se, but is the exact, shaded message the one being communicated?
I’ve had some experience with having to rename a “final exam” to a “final test,” because the former was deemed too stressful for the participants. Regardless of my feelings about this, it reminds me of the language we use when we figure out the level of our blood sugar. When we talk about “checking” vs. “testing” our blood glucose levels, the former implies something a little more informal, a check-in, to reassure oneself, to figure out what one is feeling and why. Checking sounds friendly. “I’m just checking to make sure you’re all right.” A test is something you can pass or fail, that more coldly reflects on you as a person.
Just like my students may have numerous disadvantages in writing a test, many of which are largely outside of their control (language of birth, missed cultural references, poverty or having to work a full-time job to stay in school), many of these “tested” factors are out of our control when it comes to the meter reading. Does it bother me on a daily basis? No. Does it add an implicit moral value to something that should purely be informational, that leads many people (including teenaged me, who always aced every test except this) not to check in with themselves as often as they should? I think it does.
In her essay “Chicken-Hips,” the writer Catherine Pigott explores the different way she finds food to be labelled in her North American hometown, versus the village in Gambia where she spent a year teaching English in the late 1980s. “In Gambia, people don’t use words such as ‘cheating,’ ‘naughty,’ or ‘guilty’ when they talk about eating. The language of sin is not applied to food,” she writes.
While much of this essay presents a romanticized view of the Africa she visits, removing moral language from eating is a philosophy that I would love to apply to the world of diabetes, particularly because, as we read in yesterday’s posts, the mental aspect of diabetes is huge, and so many of us deal with disordered eating. How can we judge ourselves as being good or bad when, for example, our hypoglycemic brains trick us into panicked eating, even if we’re not hungry, by literally sending us a message saying “you are dying. You will die if you don’t eat”?
Being a “good” or “bad” diabetic (person with diabetes) is fraught with problems. If you identify as “bad,” then what impetus is there to improve? You’re already catalogued. “Bad” can poorly impact mental health, or it can be used as an excuse to stop helping yourself. If your self-image hinges on being a “good” diabetic/PWD, then it’s harder to defend yourself against feelings of inadequacy that come with the inevitable, at least occasional, out-of-range or fluctuating blood sugar.
The only thing that’s bad is the diabetes itself (I’m sure some would argue, but I think we can separate good that comes from diabetes from the actual condition, which is unpleasant). I’d avoid the word almost entirely, though, because even when you call diabetes bad, someone will use it to ask if you have the “bad” kind of diabetes. (Is there a good kind?)
Finally, my least-favourite word to cross the diabetes path is “noncompliant,” used to refer to a patient who isn’t 100% perfect so that the healthcare provider can abdicate responsibility to the patient instead of working with the patient’s life, particular situation, strengths, and limitations. You know, I get it. When I have 160 students, it’s incredibly easy to look at a student who isn’t getting things the way I’m teaching them, and label the student as a lost cause or a lazy seat-filler. But I have a responsibility to at least try. I can’t help every single one of my students, and yes, being met at least halfway makes a huge difference. I see it, though, as a failure of the system, of my resources, and ask if there’s anything I can do to make it better.
“Noncompliant” brings up images of stubbornness, immaturity, handwavery, “there’s nothing we can do.” It sounds like something out of a BDSM novel, where the D stands for something different. We don’t really need “50 Shades of D.” If we think about diabetes as a war, or a game requiring specific strategies, I prefer to think of the noncompliant as “members of the passive resistance” or “conscientious objectors.”
Or maybe, just maybe, we can think of them, and ourselves, as people.