What is a Healthy Mindset for a Diabetic?

Over the last couple of years I’d been studying narrative and its impact on us as humans. In the case of diabetes, I’ve tried to identity what the pervasive narratives are, where they come from, how they get reproduced, and who and how they are countered.

One narrative I’ve spent much time on in the diabetes context is the one that sounds like, “You can do anything. Diabetes doesn’t have to stop or limit you.” The intention, I surmise, in these types of statements is to inspire. The intention is to encourage diabetics to believe in themselves and to try the things they want to do. This narrative assumes that limits are about attitude.

But what is the impact of that? I ask because the undercurrent of this narrative is that if a diabetic person isn’t able to do something, it is because they didn’t try hard enough or because they had a defeatist mentality. That is the impact. That is the message so many diabetic kids and adults take away from the narrative that diabetes doesn’t present limitations.

What’s worse, this narrative also directly reinforces the public’s idea that diabetes is not a serious disease. They see us saying “diabetes doesn’t stop me from doing anything” and wonder, “then why are you telling me you need extra time on an exam or to keep juice near your desk at work?” When we downplay how much diabetes impacts our lives, we inadvertently encourage outsiders to dismiss our hard work – to see it as easy. We get accommodated less often, and when we do, it takes a bigger fight.

So, the “limitless” narrative is destructive to our community by sustaining stigmatizing perceptions of diabetes as a simple, easy, and non-serious disease.

Saying I can’t do something because I have diabetes doesn’t mean I am letting diabetes dictate what I do. To me, saying I can’t do something is finding peace of mind about the things I cannot control. Saying I can’t do this or that because of diabetes releases the pressure of having to fight my body and push it to do things that are painful or stress-inducing. It also allows me the narrative flexibility to request accommodations when I need them. It allows me the space to accept my body as it is and to let the public know that diabetes is hard to manage.

I think the medical profession, broadly, has the perspective that the only healthy mindset a disabled person can occupy is to desire to be as able-bodied as possible. Only when we are pushing ourselves and our bodies to appear normal, to function normally, to be normal, are we demonstrating a “healthy mentality”. Leaning into disability identity and accepting limitations is seen as disempowered. It’s seen as giving up. To those agree with those words, listen up:

Accepting limitation ≠ giving up.

Accepting limitation ≠ a defeatist or unhealthy mentality.

Accepting limitation ≠ letting diabetes/disability run your life.

I don’t want to be and appear as able-bodied as possible. I want to live in the body that I have. I want to listen to it and allow it to factor into all my decisions so I can be physically and mentally healthy where I’m at now.

A healthy mindset isn’t wanting to be like the ableds. A healthy mindset isn’t about pretending or performing that diabetes doesn’t prevent you from doing anything you want to do.

A healthy mindset is being okay with how, who, and where you are, right now.

Thanks for coming to my TED Talk.

An Open Letter to Domee Shi: Diabetes Representation in the New Pixar Trailer, Turning Red

Dear Domee Shi,

On July 14th, Pixar released the trailer for the upcoming 2022 film, Turning Red. During a classroom pan-over in the trailer, we catch a glimpse of a student who is sporting what appears to be a continuous glucose monitor on their arm and a purple insulin pump on their hip.

As a scholar with diabetes who writes about diabetes representation, I’m so filled with gratitude to see this! And I am not alone. People in online communities spanning platforms have been sharing screen grabs of the character over and over. We’re celebrating, big time. Many posts celebrating this win are tagging and mentioning John Lasseter because his son Sam has been living with type 1 diabetes for about 30 years. Many of us assumed that he was, thus, behind this detail. However, you’re the woman in charge and likely made creative decision for every micro-scene within this trailer. And as director, you featured more diverse characters than we’ve ever seen in a Pixar trailer. I know that you care about diversity and inclusion.

I’m writing you this open letter to talk about representation. You may have written or at least approved of this character. You may have someone on your team with a connection to diabetes. And I was happy to see that the trailer does not specifically say what type of diabetes the character has. Considering that kids with type 1 or 2 have access to this technology, it is of benefit to the wider diabetes community to not type this character. Our broader community grows by keeping this representation inclusive. I’ve been sharing this message on Instagram and Twitter and have support, but also a lot of pushback. I’d like to explain that pushback to you and why I think it is happening.

People with type 1 diabetes are exposed to the same stereotypes that people with type 2 are. And the world thinks horrible things about people with diabetes. The world thinks we are lazy, that we don’t care about our bodies, that we choose indulgence over health. The world subjects us all to the same stigmatizing narrative. They decide who we are before knowing who have decided to be.

Historically, people with type 1 have used a distancing strategy to evade the stereotype. We’ve called it education or raising awareness about the “different types of diabetes” under the impression that if the public knows we’re different, we wont be stigmatized anymore. As a researcher of stigma, I can tell you we haven’t and will not make a dent to reduce stigma using this strategy.

It’s called defensive othering. It’s a strategy that many of us have resorted to with the expectation that it is helping. Again, it isn’t. Here’s why: when we say “I didn’t cause this, I have type 1, not type 2”, we are validating the stereotype. We are semi-covertly saying, “it is true about those other people, but not about me.” In essence, when we use distancing as a strategy, we recreate the problem we are trying to avert.

To make it more clear… Imagine Nemo had diabetes. And to protect him from the harms of underwater diabetes stigma, Marlin uses defensive othering:

Hank the Septopus: [sees nemo giving insulin before eating a kelpcake snack] Should you be eating that?

Nemo: [looks away embarrassed then glances to his dad, Marlin]

Marlin: Well, Hank, you see, Nemo has type 1 diabetes. He can eat what he wants as long as he takes insulin, which is what he is doing, right now.

Hank: But, he has diabetes. Didn’t get get that from eating too many kelpcakes?

Marlin: Well no, what you’re talking about is more typical with type 2. Nemo has type 1, which is an autoimmune disease. He didn’t do anything to cause this.

Hank: Oh. [looks toward Nemo] Enjoy that kelpcake!

In this scenario, Hank – who entered the conversation with stigmatizing views of diabetes, is leaving with stigmatizing views of diabetes. Marlin telling Hank about how Nemo is an exception to the stereotype does not change the stereotype. In fact, it makes it stronger. Because now, Hank has been told by someone with experiential authority that there are people in the world who have the kind of diabetes you get from eating too much sugar. Hank walks away, ever more certain that diabetic fish (just not Nemo) earn their disease by eating too many kelpcakes. These ramifications do not stop at stigma.

When diabetes stigma is reinforced, access to tools like CGMs, insulin pumps, and even test strips are denied to folks with other types of diabetes. This issue is compounded when the diabetic person from a historically excluded group like people of color and those systemically kept in poverty. When we Other them, we directly subject them to greater harm. And we have to take responsibility for that. I do. As someone who, in the past, used this strategy. I take responsibility and am changing my ways now.

If we can move type 1 diabetics to, instead of defensively othering, reject the stereotypes altogether, then we might start to move the needle.

I say all of this to you because, right now, you have a huge opportunity to model a more inclusive representation of diabetes. The Turning Red trailer does not give us enough information to know what type of diabetes they have. Many have expressed how they are eagerly awaiting more information in the actual movie to be certain.

I’m here to beg of you, please do not provide that information. Cut it from the movie. Keep this a representation of diabetes that kids with all types can see themselves in.

Seeing others like you in tv and film can impact identity building. And kids with all types of diabetes deserve to build their identities in a healthy way. Seeing others like them in an animated classroom normalizes that experience. It makes them feel like they belong, like they aren’t alone. And even in some ways, like they are going to be okay. I expect that this information is familiar to you as an Asian American woman. We both just just how much representation matters.

Please, please, help my communities come together. Let us come together to change the public’s perception of what it means to have all types of diabetes. Be a part of our movement. Keep any information about diabetes types out of this film.


The Chronic Scholar