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.
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.
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.
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.
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.
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.
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.
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?
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?
60-minute tweet chat will take on [DATE] at 9pm EST.
THERE ANY BENEFITS TO TAKING PART IN THE STUDY?
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
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 firstname.lastname@example.org or the faculty
advisor, Dr. Joy Hammel, at 312-996-3513 or email@example.com.
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 firstname.lastname@example.org.
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.
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!
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.
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…
…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.
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.
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.
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
The article and research findings were striking but also a big ol’ DUHHHHH.
When asked about the division of labor in the household, 90% of women reported they are solely responsible for organizing family schedules and routines, even though 65% of them are employed.
The article explores this idea as invisible labor. It argues that mothering is labor that isn’t seen or recognized. It is done without pay, and generally without time off. In my studies, this kind of work has been called informal labor, but labor all the same. Mothers who reported being solely responsible for their family’s routine, schedule, and the like were found to have decreased levels of satisfaction with their lives and relationships. And these women feel less satisfied in part because they don’t have time for themselves or their own self-care.
When reading the article and the corresponding study, I begin thinking about mothers who have chronic illness(es) on top of having a job and or career. Further, I began considering my own experiences with motherhood and chronic illness. I share the following not to toot my own horn, but to expose what I think is a fundamental cultural flaw that I at some point in my life deeply internalized.
I am the mother of a 15-month old. I work two part-time jobs. I am finishing school to earn a PhD in Disability Studies. I am working on completing nine manuscripts for scientific journals. I am also writing a book. I take 75% of the household responsibilities, maintaining the family calendar, transporting Bubs to and from daycare daily, grocery shopping, etc. My husband helps every chance he can, but his work schedule is so demanding that that help is limited. On top of all that, I have multiple chronic illnesses that I have to manage every day every hour of every day. Doing all of this should not be seen as impressive, it should be seen as foolish. I am spreading myself too thin because at some point I internalized the notion that success looks like doing it all. Deep inside my psyche is a fear that if I don’t accomplish specific things, I will not be accomplished.
I feel valued, but being valued doesn’t improve my level of exhaustion. Being valued doesn’t help me take time for me. And I think this article turned something in my mind. Below is the excerpt that did that.
We talk about mothers needing more time to “self-care” while they take care of their partners and children and dogs and cats and fish. With chronic illness, I’ve always known and believed that when I am able to self-care I will do better with my disease management. Herein lies the problem inherent in motherhood and in chronic illness (and rampant when combined). All the care of the mother and the person with chronic illness is the responsibility of the mother and person with chronic illness.
Mothers need to be cared for. Mothers need to be nurtured. Caring for them doesn’t stop at giving them time and space to self-care. This idea is so foreign to me that I don’t even know what it would look like. In my home, I feel loved. I feel loved and valued and appreciated for all I do. I feel cared for in that my husband and family care about my well being. However, I also feel like if I stopped the labor of caring that I do, there would be chaos. It’s a chaos I think would organize itself overtime in my absence, but it would be such for a long while. To say people care for is true. To say the labor of caring for myself is solely on me is also true. This applies to motherhood and chronic illness as they exist separately and as they overlap.
If chronic illness was added to the mix, I wonder how the study results would change? I also wonder what would surface if the researchers asked mothers what it would look like to them to be nurtured, to not rely on self-care, but to be cared for with invisible labor from their partners and or children.
What would it look like to you? To the women who don’t have children but who have chronic illness or a disability, what would it be like to not have to self-care because your partner or parent took on the labor of caring for you? Is this a fantasy, or are there things we could do to allow our loved ones to share in the invisible labor of caring?
I don’t have the answers. Though I am fully prepared to embrace any suggestions for how to move away from my own internalized oppression and allow those around me to share in the labor of caring.