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.

Sincerely,

The Chronic Scholar

I’m Hosting a Webinar! Eek!

After much consideration, I’ve decided to host a free webinar to talk about my research, how I got from grad school to a semi-academic career path, and where I am going next. The second half hour of the webinar, I will be opening up the floor for free flowing discussion about whatever those who show up want to talk about.

This is an experiment, of sorts. I’ve never done anything like this, or even heard about it. While I am speaking at five conferences this year, I feel like keeping all this information in those silos is doing a disservice to the work and also to the communities who are potentially impacted by it.

Here are a few specific research projects I’ll be covering:

  • Diabetes identity article
  • Metanarratives of diabetes chapter
  • Self-Exceptionism theory
  • Physician wellness, and
  • Humanizing big data

If you are interested in my work, wanting to chat with an academic, hoping to learn more about one person’s path out of the traditional academic tenure-track and into something else, join me.

Since it is virtual, I wont be able to offer snacks, but you sure as heck can bring your own. I want this to be fun and low-key. I’ll be telling some stories and sharing my personal journey too. I hope you’ll join me!

Registration link is here:

https://form.jotform.com/211754684512154

After you sign up, I will send you a calendar invite with Zoom details.

Can’t wait to see you!

It’s been a minute!

Wow, it has been a while since I did a check-in update post.

Hi! I’m still here!

My career has been shifting a lot and I’ve been working and publishing on projects outside of my usual diabetes + disability studies area of expertise. These seemingly random projects are all happening through my job as a social scientist at the University of Utah Health. Oh yeah, I moved to Utah three years ago…. There, I lead qualitative research and specialize in a tool called SenseMaker. It’s rad. Look it up if you have a minute. I’m not sure if “diversifying my portfolio” is what I anticipated when I took the job, but it is certainly what I’ve been up to.

As for my expected career trajectory, major strides there too. I recently co-wrote a chapter, called The Metanarrative of Diabetes: ‘Should you be eating that?‘ for a book called Metanarratives of Disability: Culture, Assumed Authority, and the Normative Social Order edited by David Bolt. The chapter is excellent and lays the groundwork for the even bigger update…

My colleague, Bianca C. Frazer, and I have been working tirelessly over the last two years to edit a book of essays. I didn’t post updates about it as we went along because… I think I didn’t want to jinx it? I’m happy to say that the completed book is with the publisher, Palgrave Macmillan.

THE BOOK. (!!!!!!!!)

The book is called (Un)doing Diabetes: Representation, Disability, Culture. People… it is amazing. Our authors, of which there are 22, knocked it out of the park. Our authors are community activists, activist scholars, and scholars who span a wide range of academic fields. In (Un)doing Diabetes, we use disability studies frameworks to identify, critique, and locate generative solutions to representations of diabetes in medias like film, tv, social media, non-profit organizations and the like. It’s so badass, talking about it makes me super giddy.

This book is for everyone, not just academics. There’s something in here for every single person.

The book should be published and available for purchase in late fall. I will (of course) post about it again then.

If you’re a person who does a podcast or writes for any type of media outlet, hit me up. We’re going to be on the hunt for readings and opportunities to talk about the book as much as possible as the fall draws nearer.

For now, thems the updates.

I’m going to be doing more writing here, musings mostly. So, I’ll see you soon.

Specialty Tweet Chat, Calling all Practicing and In-training Physicians!

On Tuesday June 1st, we will be hosting a Tweet chat to learn about you, your specialty, and the twists, turns, and considerations it took to get there.

We will be hosting a 1-hour long #SpecialtyChat tweet chat as one component of a larger project to identify medical school educational programs and specialty-specific factors that encourage and discourage women and individuals underrepresented in medicine to pursue anesthesiology as a career.

The tweet chat will be led by Dr. Harriet Hopf from her Twitter account: @HarrietHopfMD, and by Dr. Megha Vipani at @MeghaVipani. Please follow both accounts in preparation for the chat.

What is a Tweet Chat?

A Tweet chat is a live participatory Q & A discussion that happens on Twitter via hashtag. At the start of the hour, you will search Twitter for the #SpecialtyChat hashtag and follow the thread there using the tab called “Latest”.

Our tweet chat will be led by one moderator who asks questions, and all participants will answer the questions. The questions are numbered (e.g. Q1), as are the answers (e.g. A1). For every tweet where you answer a question, you add the designated tweet chat hashtags (#SpecialtyChat & #MedTwitter) at the end. This helps to bring all the responses together under one thread. Engaging with other participants is highly encouraged.

Who Can Participate?

Current or future physicians in training and practicing are invited to participate! A tweet chat is designed to be open and free flowing. All who would like to join in can. There will be an opt out procedure linked out several times during the chat. You can participate in the chat AND opt out. This just means that your tweets will not be used for research purposes. If you want to join the conversation but not be a part of the project, clink on one of the opt-out links during the chat or fill out the form below.

What Will Be Asked?

Below are the questions that will be asked during the chat in consecutive order. Please feel free to prepare your responses ahead of time!

  • Please introduce yourself! Share who you are, your level of training, selected specialty, and one boring thing about your day.
  • What exposures did you have to medicine before starting medical school that left the biggest impression on you?
  • When you first decided to pursue medicine, what type of medicine did you envision yourself practicing?
  • I knew I was meant to be a [your specialty] when…  
  • For me, going into [your specialty] meant I would be able to…
  • Choosing a specialty always involves trade-offs. What trade-offs concerned you when selecting your specialty
  • Not all paths to picking a specialty are linear. What other specialties did you consider? What made you turn away from those?
  • Is there a specialty you wish you would have been exposed to before picking your specialty? If yes, which and why?

When will the chat take place?

The #SpecialtyChat will take place on Tuesday, June 1st at 8pm EDT/7pm CT/5pm PST. The chat will last one hour.

If you have any comments or questions, please email me or write in the comments. I’m so excited to be able to share this opportunity with you.

Opting Out

If you’re here to opt out, please use the form below.

If you would like to participate in the twitter chat but do not wish to have your responses collected as data for this study, please fill out this form. If you would like your tweets to be included, please leave this form blank.

IRB APPROVED

This study has been approved by the University of Utah IRB. Below is the consent information.

New Publication on Diabetes Identity

I’m so thrilled to share my most recent publication that can be found in Qualitative Health Research (QHR).

It was a long time coming. In fact, this article was a part of my dissertation research. The article, entitled Diabetes Identity: A Mechanism of Social Change uses interviewing to explore identity in diabetes.

At the start of the article, I provide a summary of the literature within which my article is now situated. I call attention to the reality that literature on diabetes identity has (until now) focused on compliance.

With that in mind, this article showcases elements of diabetes that are extend beyond the doing of self-management behaviors. I asked interviewees, “to what extent is diabetes a part of who you are?” and “is there a diabetes identity?”.

The results are insightful and thought-provoking. It is my hope that this article is eye opening. Below are a few images containing results. Here is a link to a twitter thread about it.

If you want to access the article but are seeing a paywall, feel free to email me using my contact page. I will make sure you get a copy.

Happy reading!

Can We Make Sense of Diabetes Burnout?

Diabetes burnout is not a new concept to most people who live with the condition. It is a phenomenon that people with diabetes can experience overtime managing diabetes. It might look like feeling discouraged or unmotivated when trying to do diabetes self-management all the time 24/7. Diabetes burnout is a reality for many people spanning all types of diabetes.

Photo by Kat Jayne on Pexels.com

LINK TO SURVEY: https://bit.ly/Diabetes_Burnout

Even though it is such a common experience, it turns out we don’t know a whole lot about diabetes burnout. There is a book about it, but it was written many many years ago and could use some refreshing to meet social and cultural shifts. As a researcher, I am interested in the subject. Also, as a person who has had diabetes for 19 years, I am interested on a personal level too.

This project uses SenseMaker technology to try to gain a deeper understanding of how burnout is felt. It also attempts to understand how healthcare providers might best address people with diabetes while they are in active burnout. I have the great fortune of working at a large health system that is willing to listen and learn. My hope with this project is to reach beyond scholarship and to actually make changes. I hope that with the information I learn in this survey, from your stories and experiences, I can craft a curriculum to then use to train providers.

I hope you will give 15 minutes of your day and share with me what diabetes burnout has been like for you.

This survey will look different than other survey’s you’ve taken. Instructions are shown at the beginning. If you have any questions or concerns, hit me up on Twitter @heather_roseW, or via a comment here.

I thank you for your words and thoughts.

#CripTheVote Article Published!

Back in 2016 I joined a Twitter community campaign called #CripTheVote to elevate disability issues during the US Presidential Election. It didn’t take long for me to notice that something spectacular was taking shape – a social movement. For a graduate class I was taking at the time I decided to collect an archive of the Twitter dialogues being led by Alice Wong, Gregg Beratan, and Andrew Pulrang via the #CriptTheVote hashtag.

It took nearly four years, but the research is now published open-access in Participations: Journal of Audience and Reception Studies.

Click the link above to access the article.

Below is the abstract. Enjoy!

ABSTRACT: In preparation for the 2016 presidential election, disabled thought-leaders and activists used Twitter to create the #CripThe Vote campaign, aimed at mobilizing their online communities to make disability access and inclusion a recognized social problem. Utilizing qualitative content analysis of over 11,000 tweets, this study found that the individual action goals propagated by  disabled activists who engaged with the #CripTheVote hashtag differed from those centralized by the leaders of the campaign. Activists used the #CripTheVote to counter pervasive ableist ideologies pertaining to political engagement. They connectively argued that: 1) disabled people are politically aware; 2) disabled people have voice; 3) the opinions of disabled people matter; and 4) disabled people will fight for their rights. This paper serves as a historiographical document of online activism taking place via #CripTheVote and aims to contextualize it within the corpus of disability studies literature.

Working From Home during COVID-19? Take this Brief Survey.

Survey Link

WHAT: The purpose of this survey is to understand how adults who have maintained their job, but had to adjust to working-from-home, are doing. The survey asks questions about structural, technical, emotional, and cultural aspects of working from home.

WHO: This survey was designed to be taken by adults who have maintained their jobs and who have transitioned to remote work during the COVID-19 crisis.

Privacy: The survey is 100% anonymous.

HOW: This survey will not look like others you have taken. It uses space to gauge your responses in relationship with a number of elements. When you follow the survey link, there are directions provided.

WHY: By understanding how adults are coping with adjusting to working from home requirements, the hope is to improve remote work policies across institutions. This survey considers many areas of potential improvement.

If after reading this information, you are interested in participating, click the link below!

https://bit.ly/COVID-WFH

Thanks! Please share this post with friends and colleagues who are working from home during this weiiiiiiiiiiiird time!