Diabetic? Musings on How We Identify
In one of our early episodes, I sat down with Dr. Heather Walker and talked through a LOT of messy and complicated aspects of Diabetic identities: resistance to being labeled as “sick,” the stigma that assumes you’re sick because of your choices, understanding oneself as disabled (or not), overlaying Diabetes with fat shaming and racial stereotypes... there was a lot. In the months since that episode went up, I have come back to that topic again and again, trying to get a handle on what made that conversation—and the larger social issues wrapped up there—so poignant.
For one thing, Diabetic identity is such a tricky thing to get a feel for.
I used the term “Diabetic” there. That probably captures most of you reading this with a shrug emoji, because that word as an identifier is very, VERY widespread. We are inundated with it, really, to the point that there are many who rightly point out that the word itself has become wrapped up with all of the messy (gross) stigmas built around what it means to be Diabetic in the US today.
Diabetic identity is such a tricky thing to get a feel for.
Most everyone knows what I’m referring to, right? It usually boils down to some visage of stigmatized fatness, an individual’s “choice” about “lifestyle” that they just need to “take responsibility for”—and, as some are unwilling to openly acknowledge, Blackness.
This cultural image of the Diabetic is created and circulated through the things we engage every day, large and small. From the incessant Diabetes jokes (which are not funny jokes, folks. That’s lazy comedy writing, with a weak basis and no real comedic break. Don’t do it), to the posters in public spaces and memes on Facebook, even to the doctor’s office and the ways we talk about our Diabetic family members, all these stigmas feel so normal (and therefore “true”) because they’re reiterated ALL THE TIME.
They are also primarily about controlling bodies.
And here I get back to the challenges I have run into as a researcher, writer, and activist working around Diabetes and Diabetics over the course of nearly a decade: How do I identify the people I am working with/for/about? What words do I use to represent their experiences?
Though the ethics of scholarship can get complex in cases like this, there are two primary ways I remember thinking and talking through this with colleagues and participants:
Use the framing that best represents the social and political goals and needs of people. In other words, what descriptive tools have I built that best represent the people I am identifying, and how do those jive with the purpose of the work they are/I am doing?
Use the language people use for themselves. When I sit down for an interview with someone, and they use particular identifiers for themselves and their experiences related to health and disability, it is important that I do not somehow just insert myself as the “scholar/expert” and identify them however I feel is best. There are entire fields that have been defined by doing this to “Others,” and it is/was/will always be more about the power of “Us” than it is the experience of “Them.”
Because I was writing primarily about people's experiences with health(care) and devices, I did this in two ways. First, if I was referring to them in the context of treatment I used the term patient-user.
(I know... Academics, am I right?)
The context there is key, though. Those two terms I hyphenated together represent relationships: between people and institutions of Medicine, and between people and technologies. Since those relationships were, in essence, the entire focus of that scholarship, the clunky hyphen monster made sense.
In most other situations, using that term doesn't work (and would actually come off as a bit ridiculous and elitist). So when referring to a person in the context of life with chronic illness/disability?
Enter: another clunky liberal, person-first identifier.
“People with Diabetes”
I used that term off and on for years, both in writing and in conversation. In recent years I’ve asked myself why that identifier became such a standard descriptor to fall back on. In part, I remember having conversations about how many readers (working from the stigma-centered mess I mentioned above) could understand a term like Diabetic in a way that would undercut some of the justice-oriented work I was doing.
In hindsight, though? Honestly? A term Heather Walker used gets closer to the heart of my choice of language: “defensive Othering.”
Type 1 Diabetes was always identified very clearly as the primary focus of my research and writing, and for good reason. For one thing, when writing a dissertation, erring on the side of hyper-specificity is always the safest route to avoiding misunderstanding (because we need committee members to JUST PASS THIS FREAKING THING!!). Beyond that, though, there are some experiences related to the body and treatments that are particular to Type 1, and those lives deserve a clear focus.
Deeper than that, however, I think my consistent differentiation between Type 1 and Type 2 makes it clear that there was an unconscious desire to distance “this one” from “that one.” The one that carries so much of the stigma and shame, that (even though I KNOW BETTER) is constantly talked about as a result of poor choices—and it was an easy way to show that these Diabetics have/had no choice in the matter.
My consistent differentiation between Type 1 and Type 2 makes it clear that there was an unconscious desire to distance “this one” from “that one.”
I have—in many instances, I admit—reinforced some of that BS stigma surrounding “Diabetics” through the simple act of avoiding the word itself while working with/about “people with Diabetes.” The conceptual distance the latter term creates, between people and the actual physiologies of their own bodies, is really about trying to distance those I work with—and myself—from the Big Bad Diabetic.
And here, much of that conversation with Heather is instructive. Reframing our language and our ideas about what it means to live with diagnosis, to be Diabetic, in a way that grants us the ability to talk about illness and disability without relying on simple imagery and stigma. Being Diabetic is nuanced, and messy, and funny, and terrifying, and weird, and frustrating, and it’s life.
In a society that devalues—or really fears, and hates—both illness and disability to such an extent that the people who live chronically ill and disabled lives become visages of the very fears and hatred that drives the (supposedly benign) aversion to being identified as either, justice-oriented work has to reckon with the ways we (and I) are part of it, and it is part of us. And we need to tear down those parts of ourselves if we want to build a more just world.
