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!

Exciting Opportunity! Call for Proposals – Diabetes on Display

DEADLINE EXTENDED TO

MARCH 1ST!!

Wow. I am so excited to be writing this here, on my blog. So I have been working with a fellow disability studies scholar who has diabetes (the amazing Bianca Frazer) on putting together the parameters for a book about how diabetes is represented and how various groups of folks with diabetes respond to those representations.

I am pasting the call for proposals (CFP) here because I want this open call to be as accessible to people as possibly, scholars and community members alike. If you want to submit a chapter proposal for this book of collected essays, see the link at the bottom of the call.

Without further adieu….

CFP: Diabetes on Display: Complicating Social, Political, and Cultural Representations of Diabetes

Call for Chapter Proposals

Edited by Bianca C. Frazer and Heather R. Walker

We seek essays 3000-6000 words in length for inclusion in a book to be submitted to The University of Michigan Press series titled Corporealities: Discourses of Disability. The series editor has expressed interest in the project which will focus on social, political, and cultural representations of diabetes. We invite works that are theoretical, analytical, and/or empirical. 

In the U.S., diabetes has many social and cultural representations -from a joke alluding to someone with a “poor lifestyle” to an “epidemic” that needs to be resolved. The great majority of popularized portrayals are stigmatizing to populations with diabetes – some more than others. 

 Stigma occurs in a social context where a person is understood by others to have “undesired differentness”’ (Goffman, 1963, p. 5). That undesired differentness can be internalized or contested by those ascribed it as an identifier. We approach discourses of diabetes representation through the lens of the abject, because “people’s knowledge about diabetes is filtered through different modes of experience- individual, familial, community, cultural” (Bock, 2015, p. 135). This collection seeks to answer three central questions: What are the social, political, and cultural representations of diabetes? How do these portrayals interact with the broader social environment? How do diverse groups of people touched by diabetes respond to various representations? This volume provides a robust analysis of representations of diabetes with the intent to deconstruct both mundane and insidious messages about it in cultural, political, and social spaces. 

The purpose of this book is two-fold: 1) to serve as an intervention in the humanities and social sciences by offering a critical perspective on social, cultural, and political representations of diabetes; and 2) to establish diabetes as a site of inquiry in the field of critical disability studies where it has been largely overlooked. 

Critical disability studies has yet to consider representations of diabetes, while health-related fields typically view intervention on diabetes at the individual management and prevention level. The editors of this collection are guided by Tobin Siebers’ (2017) theory of complex embodiment as a starting point to engage the social and cultural dynamics of diabetes in U.S. culture. Complex embodiment views “the economy between social representations and the body not as unidirectional as in the social model, or nonexistent as in the medical model, but as reciprocal” (p. 284). Through this book project we seek to examine such spaces of reciprocity in the midst of contemporary issues like the insulin crisis to analyze the complexities of self-care, embodied willpower, and stories that permeate media about diabetes. Jeffrey A. Bennett’s (2019) account of diabetes in the public imagination furthered this conversation while the escalation of the insulin crisis has generated self-representation and social activism by people with diabetes. In this shifting landscape of activism diabetes is being politicized – meaning representations of diabetes need to be changed. A wider population of people with diabetes are coming into empowered consciousness and engaging in beliefs, attitudes, and behaviors described by Disability Studies scholar Alison Kafer’s political-relational model of disability (Kafer, 2013). 

Monographs such as Making the Mexican Diabetic (2011), Sugar and Tension: Diabetes and Gender in Modern India (2018), and Traveling with Sugar (2019) analyze diabetes in specific contexts. To further this burgeoning research, this collection brings together scholars from disparate fields to establish how diabetes is conceptualized in the face of ableism, racism, neoliberalism, and health care inequity. While medical anthropology is doing some of this research, critical disability studies offers unique tools to unpack the historical and contemporary cultural narratives around diabetes.

The book will be organized into a three-part intervention. We invite chapters that intervene at the cultural, political, and social levels. Though not constrained to this list, we invite chapter proposals that explore or respond to topics like the following:

  • Representations of diabetes in theater and performance 
  • Representations of in television and film
  • Representations of complications and diabetes 
  • Representations of diabetes in the visual arts
  • Representations of diabetes in memoir, poetry and creative writing
  • Representations of diabetes in social media
  • Representation of diabetes technology or through technology  
  • Historical perspectives of diabetes 
  • Contemporary perspectives of diabetes (e.g. the insulin crisis) 
  • Fictions, stories, and memoirs of diabetes 
  • U.S. perspectives on cultures of diabetes
  • Intersections of race, class, disability, gender and diabetes 
  • Cyborg experiences and diabetes 
  • Diabetes and celebrity 
  • Diabetes justice
  • Diabetes activism and advocacy 
  • Diabetes Social Movements
  • Morality and diabetes 
  • Diabetes and sickness
  • Non-Linear/Crip time and diabetes 
  • Cripping diabetes
  • Queering diabetes
  • Sexuality and diabetes
  • Music and diabetes

The selected chapters will be between 3,000-6,000 words. Initial chapter proposals should be no more than 250 words and use APA format. Proposals and a short author bio should be submitted via this google form: https://forms.gle/9z8fLwD5nMrmXwbP7 by February 15th at 12pm CT-USA. The full book proposal will be submitted in April 2020 to University of Michigan Corporealities, who has already expressed an interest in relation to the Discourses of Disability series. 

Timeline:

CFP: Early January

Proposal submission Due: February 15th

Notification of selected chapters: March 15th

Book proposal submitted: April 15th

Full chapters Due: September 15th

Peer Reviews Due: November 15th

Final chapters Due: January 15th

Manuscript to Publisher: February 15th

References:

Bennett, J.A. (2019). Managing Diabetes: The Cultural Politics of Disease. New York, NY: NYU Press.

Bock, S. (2015). “Grappling to Think Clearly”: Vernacular Theorizing in Robbie McCauley’s SugarJournal of Medical Humanities, 36(2), 127-139.

Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York, NY: Simon & Schuster, Inc.

Kafer, A. (2013). Feminist, Queer, Crip. Bloomington, IN: Indiana University Press.

Montoya, M. (2011). Making the Mexican Diabetic: Race, Science, and the Genetics of inequality. Oakland, CA: University of California Press.  

Moran-Thomas, Amy. (2019). Traveling with Sugar. Oakland, CA: University of California Press.  

Siebers, T. (2017). Disability and the Theory of Complex Embodiment: For Identity Politics in a New Register. In L.J. Davis (Ed.), The Disability Studies Reader (313-331). New York, NY: Routledge.

Weaver, L.J. (2018). Sugar and Tension: Diabetes and Gender in Modern India. New Brunswick, NJ: Rutgers University Press.

Siebers, T. (2017). Disability and the Theory of Complex Embodiment: For Identity Politics in a New Register. In L.J. Davis (Ed.), The Disability Studies Reader (313-331). New York, NY: Routledge.

Weaver, L.J. (2018). Sugar and Tension: Diabetes and Gender in Modern India. New Brunswick, NJ: Rutgers University Press. 

Live-Streaming an Academic Affair (Sept 27th)

WOW! So, I’ve been at work all day and until now didn’t realize that I will be in Chicago one month from today in this very hour, defending my dissertation.

What does that mean, you ask?

Well, as you likely know, I’ve been doing this masssssssive research project called a dissertation for the last year and a half in order to earn my PhD in Disability Studies.

My dissertation research is a dual-study project, meaning I conducted two studies within it. I did this for many reasons. First, I’m too ambitious for my own good. And secondly, and most importantly, I am not a fan of doing research without an action component. I can’t just study something and say ” well I found x, y, and z, and now world, go and change based on that.” We all know that most research published goes straight to nowhere-town. So few people ever read it and the world keeps on as it is.

So the first part of my research was to get at that action piece. To directly benefit the community in some way, I saw to it that something was done. And as you may recall, the action group of peer collaborators I organized for this study did an amazing job of creating an action. The #IHearYou campaign was a success!

The second study was also participatory, but in a very different way. The second study within my wider dissertation study was a netnography (study of an online culture) across Twitter, Tumblr, and Instagram. Specifically this study asks how the condition of diabetes is being politicized across these platforms and community groups.

Interesting huh? Well, HA! I am totally going to leave you hanging.

I will post some more material between now and then, but…

if you want to learn more, tune into my live-streamed dissertation defense on September 27th from 2-3pm CST.

I will post details, but save the date now!

I can’t wait to share my work with you.

#IHearYou

Living with diabetes requires sooooo much effort. The daily requirements of staying alive are relentless and unending. It is messy, unpredictable, and damn frustrating most of the time. The biggest thing though, is that unless you have a friend or community who also has it, you are likely to feel misunderstood. And even when you have friends and community, at times you can still feel largely alone.

Across diabetes online communities, people with diabetes are publicly sharing their stories – stories about their life, their triumphs, and their challenges. We are sharing our own vulnerabilities to elevate diabetes as a condition worthy of awareness, and to help our fellow PWD feel a little less alone. And as communities, our stories generally have an arc of hope, possibility, and strength. We fight for recognition and acknowledgment of the incredibly intense labor we put in everyday, simply to continue breathing.

In recognizing this, I added an action component to my dissertation research. A promise I made to myself when I began my PhD journey was to never do research for the sake of research. I will always do research for the sake of change. Rather than hope that some change would happen once I put results into the world, I worked in a method to elicit change in-real-time. The action group I convened was made up of 8 PWD, called Peer Collaborators. Over the course of a month, they went through a process of identifying ‘the best of what is’ and ‘imagining what could be’ for diabetes online communities. At the end of the month, having reflected a great deal on the strengths and assets of their communities, they designed the #IHearYou campaign.

One of the Peer Collaborators, Kim Hislop, commented during one of our initial meetings,

“I know I am a support person for other people with complications, but where is that person for me?

– Kimberly Hislop

When Kim said this, the group took pause. We racked our brains and wondered why there weren’t more people with diabetes-related complications vocal across diabetes online communities. We wondered if the messages about what it means to succeed with diabetes were too narrow across these groups, and if maybe that was a deterrent to sharing their voice? We also wondered if they were already here, but in effect silenced by all the anti-complication stories taking precedence.

The Peer Collaborators wondered what action could be taken within communities to acknowledge the voices that aren’t often heard, to affirm voices who aren’t on the arc of hope and possibility, and to recognizing the ongoing effort people with diabetes are putting forward to live another day.

At the end of the day, diabetes is just hard. While there are major bonuses, like gaining a community, and learning to know your own body really really well, it sometimes still just sucks. #IHearYou

The #IHearYou campaign was designed by the Peer Collaborators as a listening campaign. The goal is to offer an “#IHearYou” to the people who make the community what it is, with the hope that doing so will promote inclusion

This may look like posting the campaign image and tagging someone in your community who you want to acknowledge. It may look like adding “#IHearYou” in a comment on a blog post or tweet that speaks to you. The campaign was designed to be low-entry.

It is supposed to meet you where you are at.

I hope you will join us in promoting this campaign in whatever form is most comfortable to you.

Without further adieu, I’d like to acknowledge the peer collaborators who designed this campaign. I’m so grateful for the creativity and vulnerability you shared throughout this process.

I wish so so badly that Kim was here to see this campaign come to fruition. She made such a mark on its creation. I’m thinking of her today, and hoping she is feeling heard.

For a wonderful post by Stephen Shaul describing the campaign in more detail, click here.

Officially Recruiting! #DSMA Tweet Chat April 24th

I’ve been updating you about my dissertation research via this blog for quite a while now and I am happy to share a new IRB approved research opportunity happening on Wednesday, April 24th during the regularly scheduled #DSMA chat. Below are some details about the projects as well as the who, what, and when!

Project details

The following research opportunity is one part of my larger dissertation project. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of diabetes online communities (DOCs) in order to better understand how the condition of diabetes is being politicized via online social media spaces. This means I am collecting diabetes-related social media data and analyzing it for narrative themes and their connection to social phenomena. Up to 2,180 participants will be enrolled in this study.

The current research opportunity

I will be hosting a 1-hour long #DSMA tweet chat as one component of my larger project. #DSMA was selected as a research site because it has been a regular meeting place for people with diabetes and caregivers of people with diabetes for a very long time. I, myself, have participated in the chat too many times to count over the last five years! For this study, I will use both my personal twitter account, @Heather_RoseW, as well as the official diabetes social media advocacy (DSMA) account, @diabetessocmed. Please follow both accounts in preparation for the chat.

Who Can Participate?

Any one touched by diabetes is welcome 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.

What Will Be Asked?

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

  • What is the most common diabetes misconception you hear and how do you react when you hear it?
  • What do you wish people knew about diabetes?
  • To what extent is diabetes a part of who you are? 4) How would you describe your diabetes-related online interactions to a person without diabetes?
  • Why do you participate in the #dsma tweet chat?
  • Imagine a diabetes-related hashtag you made up went viral, what would the # be and it what would it be about?

When will the chat take place?

The #DSMA chat will take place on Wednesday, April 24th during the regular #DSMA time, 9pm EST. 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. Another post with all opt-out information will be posted the day of the chat.

Work-Life Balance?

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Life in academia is lonely. The social-scientist/academic’s work-life revolves around creating new knowledge, generating nuanced understandings of social systems and communication, producing and or critiquing theories of behavior and relations. It is lonely because the academic sees something others don’t. We have ideas that most of our acquaintances do not understand or can’t understand without first reading a tome of context into the topic. We have magical revelations, but few to share them with.

I’ve been getting questions lately about how I’m managing to ‘balance’ my life as a working mother with chronic illness.  So, I am taking a brief moment to share something that not only makes every Monday more bearable, but that has really changed my feelings of academic isolation.

Every Monday for the last 6 weeks, I have been meeting with a friend and fellow Ph.D. candidate to discuss the progress we have been making on our dissertations.  We also discuss our non-dissertation work responsibilities, hobbies, manuscripts in progress, and the like.

Writing a dissertation is no joke. There are a million little steps involved and it is damn difficult to keep everything straight. During our meetings, we chat about the tough stuff, and then we make a plan for the week. We check each other.

In our meeting today, my friend said,

“Can I be realistic here? This is what it sounds like you’re saying… 161-1610667_cartoon-comics-explosion-labeled-stellate-comic-book-explosion

…maybe take a break from dissertation stuff this week?”

We joke a lot and nervously giggle about the ridiculousness of the lives in academia we have chosen, sometimes unapologetically questioning “what is the point?”

I don’t think I realized how much I was in need of a friend who was aware of what I was doing on a regular basis. I didn’t realize how much balance would come from simply knowing that someone sees my work.

And right now in my life, when someone sees my work, it feels like they see me.

Today at the end of our call, we ended up picking mascots. She is a banana slug, and I, a walrus slug. I can’t even remember why. But it was fun laughing about it and now I feel more prepared to (even if sluggishly) do the tasks I need to complete this week.

For the first time, I am looking at the work-life balance not as something to accomplish, but something to share. Maybe it isn’t about what you do, but how you do it, and whom you do it with.

Sharing about specific work-related issues and goals isn’t the only factor involved in the concept of the work-life balance, but it certainly is a big one.

And today I’m feeling like a lucky bug because I have someone to share it with.