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!

BACKGROUND

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.

METHODOLOGY

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:

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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

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A Little More on Motherhood, Chronically Speaking

A dear friend sent me an article yesterday called, “Invisible Labor Can Negatively Impact Wellbeing in Mothers” by Kimberlee D’Ardenne at ASU. The article discusses a recent study asking mothers about their role in parenting and home as well as about their life satisfaction.

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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’m tired.

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.

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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.

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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.