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The Literacy Conundrum
Among the standardized tests we had to pass to graduate high school were "minimum competency" tests in reading, math, and citizenship.
While almost all of us knew the alphabet, how to sound words, and how to put words together into thoughts, sentences, and paragraphs, some people had difficulty putting those words down as text. Others had difficulty with our standard abbreviations. And in my first foray into big-box retail, I learned (too quickly!) how difficult it was for many cashiers to do something as simple as counting out change. These tasks fall into the realm of "functional literacy": knowing enough about a task or specialty to be able to understand it and do it, though not necessarily excel at it.
Often, a particular set of common tasks requires knowledge of a specialized set of abbreviations or commonly-understood (or agreed-upon) meanings for specific terms or instructions. In baking, it might be something like "cream 1 c sugar into 1/2 c butter" or "separate five eggs".
As one gets more advanced, the vocabulary becomes more nebulous to the outsider: "To a light bechamel sauce, add two egg yolks".
Becoming "literate" in a particular field is only partly a matter of terminology and instructions; it is also a matter of learning the abbreviations, colloquialisms, and unspoken underlying techniques. It is not just knowing that "separate the eggs" means to place unbroken egg yolks in one mixing bowl and their surrounding whites in another; it also means knowing the technique needed to do so, and the understanding that the least trace of yolk in the whites will adversely affect the way they whip up into a sponge cake or a meringue. It means understanding that before adding egg yolks to a bechamel sauce, they must be tempered by whisking a little bit of the sauce to the yolks before adding them to the main saucepan.
Diabetes has its own language and its own literacy. We have carbs, calories, and diet types; classes of oral medications, injectable medications, and insulins, and methods of delivery. We have short-term (glucometer), medium-term (fructosamine), long-term (A1c), and continuous blood glucose measurements. We have insulin-to-carb ratios, correction boluses, insertion sets, and sensors. We have a litany of potential complications and their severities, as well as perceived severity of our diabetes based on our diets and insulin/medication regimens.
We learn our first diabetes alphabet from our healthcare providers, or if we are caregivers for a child or parent with diabetes, from their healthcare providers. If we are the spouse, partner, child, or friend of an independently-functioning person with diabetes, that person may be our first source of diabetes literacy. From there, our literacy expands through blood glucose measurements, package inserts, logs, websites, medical books, testimonial books, self-help books, and if we are so inclined, professional medical sites and published diabetes research.
Where we sometimes come into conflict with healthcare providers -- both our own, and those we encounter outside of our personal healthcare -- is in how diabetes-literate we are, how diabetes-literate they are, and how diabetes-literate we each perceive the other to be. As in many specialties, subspecialties arise. A historical costumer may specialize in 16th Century England (as do many renfaire geeks), 18th Century Virginia (the folk at Colonial Williamsburg), or 1950's "Middle America". So, too, do we and our healthcare providers tend to specialize in specific areas of diabetes: our own (type 1, type 2, or other), exercise and athletics (think of Sheri Colberg or Team Novo Nordisk -- formerly Team Type 1), sexual health (Janis Roszler), and specific complications of diabetes.
What do you consider necessary for functional literacy in diabetes? Does it change for yourself, your PWD circle, your healthcare providers? If so, how?
Michelle Kowalski, a writer, editor and photography hobbiest living in Phoenix, was diagnosed with Type 2 diabetes in February 2005. In January 2008, as part of her quest to start on an insulin pump, Michelle learned that she actually has type 1 diabetes. (Read More)
Nicole Purcell lists having type 1 diabetes last when she's asked to provide information about herself - because that's where it belongs. (Read More)