Exciting Opportunity! Call for Proposals – Diabetes on Display



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. 


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


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.


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.

Open Access Study of Diabetes Online Communities Now Available

Over the last year, I’ve been working with a stellar team of researchers, clinicians, and community members on a scoping review of studies looking at diabetes online communities (DOCs). This basically means that we did a super intense search of research articles that already existed that talked about or examined diabetes online communities.

Our initial search landed over 14k articles and we systematically narrowed that number down using a set of search criteria. We were trying to understand more holistically what is known about DOCs.

This paper is a result of that objective and we learned a lot.

Here is the link.

When you follow it, there will be a blue box that says “Download PDF”. It will bring you to a login page, but you do not have to log in, it should start downloading on it’s own. Thanks to the American Association of Diabetes Education, this article has become open access!

For the good meaty pieces, skip down to the results and discussion sections. In an upcoming blog post I will also break down some of the cool findings. For now, enjoy a good read. once the dissertation data collection has simmered down a bit I will post more. Stay tuned.

Seven interviews later…

In the last week I have interviewed seven people with diabetes from various social media platforms for my dissertation research. If you haven’t read this blog before or aren’t familiar with me, here is a quick run down of my project:

  • I am studying narratives and counter narratives in diabetes online communities crossing social media platforms. I am doing this under the assumption that public posts talking about diabetes are inherently political because they aim, to some extent, to create change.
  • My study is multi-pronged – involving multiple steps and activities. I am collecting social media data, interviewing people who post, and hosting a peer collaborator group to generate a community action.
  • As a researcher, I am committed to producing new knowledge AND building capacity within the communities I study. I am also dedicated to providing credit and further opportunities to the community members I work with.
  • My style is iterative, meaning it builds on itself and even redefines itself as it unfolds. For example, one of my first interviewees (thank you @breezygfreezy on Twitter) suggested I rework a question. I did that and everyone since has been asked the reworked question instead.
  • Walllllaaaa!

Throughout the course of my graduate program I have used this blog space to talk about my research and the goals I have for the work. Today I want to share some of the insights coming from the interviews and web-scraping I have done so far.


One of the most important things to people with diabetes who post content online is to counter the idea that diabetes is easy. This is being executed in many different ways. For some, it looks like intentionally sharing the hard parts of living with diabetes (like the highs and lows). For others, it looks like posting a bill for insulin or a long list of supplies. Regardless of the way it is shared, people online are talking a lot about how the relentlessness of diabetes goes unacknowledged or overlooked. As a person with diabetes, myself, I have also experienced the frustration that arises when someone says, “so you just have to take insulin and you’re fine, right?” So I totally resonate with this one.

Some of the interviewees have surprised me and provided stories and ideas that I wouldn’t have expected, all of those moments of surprise have come with nuance. For example, one interviewee was discussing the difference between surviving and thriving with diabetes. They said that thriving didn’t mean being perfect, nor did it mean never giving up. Thriving meant doing the best one can with what one has. I’m learning that there are little intricacies in the stories we tell, backed up by years of lived-experience and an intense mental processing of that experience.

Another thing I am learning is that for every story (or narrative), there is a counter-story, and a counter-counter story. And so far, I’m finding that people who post about diabetes online are well aware of the story, the counter-story, and the counter-counter story.

Even though people with diabetes cannot be unified due to personality/situational differences, there is something connecting us all.

I haven’t quite gotten to what that something is, but it seems to be there, lingering, waiting to be unconvered.

Wish me luck as I continue to search, discover, and learn within this thriving community.

Cheers to you all.

#DSMA for Research, Option to Opt-Out

Happy #DSMA day! Thank you for visiting this page to learn more about the study. This is also the post where you have the option to opt-out. All study details are below.

Here is the opt-out form. 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.

Information about this study:

This #DSMA chat is a research opportunity which 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.

There are some risks to participation. Because the data collected for this study is public-facing social media data, there is a high risk that your privacy and confidentiality will be compromised. While measures have been taken to protect your privacy after the data has been collected (removal of identifiers), there are no protections to privacy within the group or outside because anyone can see or track the content shared on Twitter. There is no compensation provided for this activity. This research may not benefit you directly, however it is possible that the published findings will eventually benefit diabetes communities at a wider level.

Please note that by NOT opting out, you are consenting to allow the research to collect your responses and use them in the data analysis process. In this way, you are considered a research subject. Your tweets will be analyzed thematically. If the researcher would like to quote you directly, you will receive a DM asking for your email address, and a personalized email will be sent to you with the quote requested. If you do not approve, the quote will not be used. This is in line with the Twitter Terms of Service.

Again, if you do consent to use of your data (not opt-out), you will be considered a participant of this research study. This study will enroll a maximum of 2,180 subjects. Your participation does not involve any other activities. However, if you would like to be contacted for other study- related opportunities (eg. in-depth interview), please fill out the form below.

More Information:

WHY IS THIS STUDY BEING DONE?   The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of DOCs in order to better understand how the condition of diabetes is being politicized via online social media spaces. While the overall study has multiple phases, this #dsma tweet chat is a part of phase 2. During this phase, the researcher will be collecting social media data over a 3- month from individuals who share about diabetes through various social media platforms. The purpose of phase 2 is to understand the cultural context of the research site in an empowered and nuanced way.  
WHAT WILL I BE ASKED TO DO DURING THE STUDY?   Participation in this tweet chat will mimic regular #DSMA chats. There will be a set of questions asked and you may answer them however you see fit. You are encouraged to interact with others involved in the chat as well. The chat will last 60 minutes and will ask 6 questions.  You will be asked about common diabetes misconceptions, how diabetes is a part of you, and what you want people to know about diabetes. You may also be asked to consent to the quoted use of your social media data, which is optional.  
HOW MUCH TIME WILL I SPEND ON THE STUDY?   The 60-minute tweet chat will take on [DATE] at 9pm EST.  
ARE THERE ANY BENEFITS TO TAKING PART IN THE STUDY?   Being in this research study may not benefit you directly, but it is possible that the findings produced by this inquiry may indirectly benefit your respective diabetes online community.
WHAT ARE THE MAIN RISKS OF THE STUDY? The primary risks presented by this research study are breaches of privacy (others outside of the study may find out you are a subject) and/or confidentiality (others outside of the study may find out what you did, said, or information that was collected about you during the study).  Although we ask everyone in the group to respect everyone’s privacy and confidentiality, and not to identify anyone in the group or repeat what is said during the group discussion, please remember that other members of the group may accidentally disclose what was said.   
DO I HAVE OTHER OPTIONS BESIDES TAKING PART IN THE STUDY?   This research study is not designed to provide treatment or therapy, and you have the option to decide not to take part at all or withdraw your participation at any time without any consequences.

Your identifiable data will be kept only on a master list on a passcode locked computer that is not Wi-Fi-enabled to prevent access by unauthorized personnel. Once data analysis is complete, your identifying information in the master list will be destroyed. The data you shared, once de-identified (within 24-hours of the time the PI receives your signed consent form), will be stored in a password protected UIC Box file for a period of five years.

This message has been approved by the ethical review committee at my university. For questions, concerns, or complaints about the study, please contact the PI, Heather Walker at530.755.7673 or email at hgabel3@uic.edu or the faculty advisor, Dr. Joy Hammel, at 312-996-3513 or hammel@uic.edu

If you have questions about your rights as a study subject; including questions, concerns, complaints, or if you feel you have not been treated according to the description in this form; or to offer input you may call the UIC Office for the Protection of Research Subjects (OPRS) at 312-996-1711 or 1-866-789-6215 (toll-free) or e-mail OPRS at uicirb@uic.edu

To print a copy of this form for your records, right click on the webpage and select print. Then select “save as PDF”. Doing this will produce a printable copy.

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?


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.

My Research is Approved… Almost!

I’m thrilled to spread news today that my dissertation committee approved my project. I now am ready to share more of the study details and story of how we got here. I will note up front, however, that I am still waiting on approval from the ethical review board at my home university before I can officially begin with data collection and participant recruitment and all that fun stuff!

Hence, my research is approved, sort of.

Before sharing the details of the project, I’d like to explain a part of the process which has haunted me a little bit. I got a bit over eager when I first put all the pieces together for my first proposal defense. I even conducted some of the research activities under the impression that it was feasible since it was helping me develop the project. I was wrong about that. I was gently scolded by my committee and then reprimanded by the IRB! To those community members who I have worked with on dissertation-related projects, I will be able to contact you again regarding this after the proposal is approved by the ethical review board!

Now, on to the project details!


Across social media platforms, persons with diabetes engage in discourses on the condition of diabetes. Topics discussed range from basic illness symptomology and treatment to taboo intrapersonal tips on how to have sex while wearing an insulin pump. Among these topics is representation. Persons with diabetes discuss stereotypes and stigmas attached to the diagnosis. For example, some may cast doubt on the connection between diabetes and overeating, while others may promote a representation of the diabetic athlete unhindered by their disease. Some seek normalcy through shared experience with peers in online fora. Diabetes online communities (DOCs), of which there are several spanning a variety of social media platforms, have been documented as sites of cultural and peer support exchange. While some research has been done to understand benefits and consequences of participation in DOCs at an individual level1, none has examined it as a location of representation discourse. Counter-narrative social media movements like #IWishPeopleKnewDiabetes, #InsulinForAll, and #WeAreNotWaiting are active forums for both individual and collective cyber-activism. Though the condition of diabetes has been depoliticized through individualization in media, healthcare, and academy, discourses taking place on social media suggest that the diabetes lived-experience is political. It is vital that methods which capture the sociocultural context unfolding across diabetes online communities are used to examine this. Again, however, very little research has yet to take this approach. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of DOCs in order to better understand how the condition of diabetes is being politicized via online social media spaces.


The framework for this study will employ the philosophies of two methodological approaches, namely participatory action research (PAR) and netnography. PAR emphasizes community collaboration, action-oriented participation, shared ownership throughout the research process, and social change-making2 and netnography emphasizes researcher immersion, cultural exploration, thick description through field notes and interviews, and iterative data analysis of online groups3. These two frameworks will provide a cultural, action-oriented lens through which to examine DOCs as cultural sites. Both frameworks require the use of reflexive methods to guide research design and analysis4 and offer opportunities for researchers to focus on collective and connective apparatuses of mobilization and social change, rather than individualistic outcomes and changes5. Lastly, the flexibility of these approaches allows for overlapping research activities that inform each other. The netnography is member checked by PAR collaborators, and the PAR collaborator meeting discussion and content are informed by the netnography.

Cool, Huh?

At this point, I am sharing for the sake of releasing this information up front. I will continue to post about the progress of this project and list any engagement opportunities moving forward.

For now:


Research Opportunity with Policy Implications: #InsulinForAll

One of my goals with this blog is to share research opportunities with you! And today I have an exciting one to share. I’ve been involved in the development of this survey, but played only a very small role. I was involved enough, though, to vouch for it and the implications the results will carry.

This 25-30 minute survey asks about the financial challenges related to accessing diabetes medications and supplies. It asks about the experiences we have had with trading, selling, and donating our supplies to help each other out.

This topic is so important right now with the price of insulin soaring and a larger percent of PWD not being able to afford it. I personally have had to borrow insulin, test strips, and pump supplies from friends just to get by. When I was pregnant I had terrible insurance and was forced to think about my insulin usage in a different way.

The survey is de-identified, so there is no risk that your responses will be tied back to you. I realize that it can feel unsafe to give researchers this information as trading, selling, and donating supplies is technically ‘off label’.

There are policy implications of this survey that could benefit the movement to make insulin more affordable. So I urge you to please take the time to fill out this survey and share it with your diabuddies and DOC friends (also applicable to parents of kiddos with diabetes and partners).

If you have #diabetes or care for someone who does, please consider taking this anonymous survey. https://bit.ly/2Bdsgsy #T1D #T2D #insulin4all