Examining Representations of Diabetes

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I’m enrolled in a course this semester called “Disability and Culture.” In this class we are looking at representations of disability in film, art, writing, etc. A major take-away from our first lecture was that representations of disability are inherently value-laden. This means that every single time a character or piece of art presents with a disability, there is a value-based meaning attached to it.

Forrest Gump. Hodor. Mad-Eye Moody.

All three characters are defined, motivated, and behave according to the their respective impairments (or rather, to the able-bodied expectations of their impairments). Try and think of a single time you’ve seen a disability presented without some value-based meaning attached to it. You can’t! It’s impossible! Even acute injuries are contextualized, joked about, justified.

Considering this argument, I have been thinking about how diabetes is presented. What first came to mind was of course: fat, lazy, gluttonous, old. Upon a second, and perhaps deeper, reflection I thought: sad, careless, lacking, dependent, unaware, bad.

I’ll be the first to admit I watch a LOT of television. In my observations, the most common representations of diabetes are used as a comedic device or as a plot-pivoting clue. The former is no surprise, right? It might look like this: Character A sits on a couch eating a plate of donuts. Character B remarks “You’re gonna get diabetes.” [Insert laughter here?]. This first common representation of diabetes is one we [in the diabetes online community] have spent post after post, tweet after tweet, trying to dismantle. We do not take this [mis]representation lightly, as it contributes to the stereotypes and stigma attached to living with diabetes.

But the second representation, the plot pivoting-clue, is one we talk about in the diabetes community far less frequently. It might look like this: Crime detective reads blood test results from crime scene, says “The blood sugar level is 350, the murderer must be the wife because she is the only one with diabetes.” My opinion on this representation is not fully formed. I’m mostly filled with questions about how we ought to interpret this as a community. Is the diabetes responsible for the crime? Are people with diabetes easier to catch? Are we being objectified in this process? Please let me know your thoughts in the comments. gfn15xals34wy

In a first attempt to tease out the meaning behind diabetes represented for the purpose of developing or pivoting a plot, I’d argue that diabetes is inconsequential or expendable in this context and can be, rather, taken just as measurable human deviance. In other words, the representation is not of diabetes itself, but simply as a deviant Other. I use deviant in this context to mean “away from the average.” If we take this assumption to be true, then we can also ascertain that diabetes is Other-ing. Diabetes is that which makes us different.

Diabetes is the contrast, the evidence, the scapegoat, the giveaway.

Diabetes is that odd deviation see-able through the microscope.

Diabetes is, then, not only what makes us different, but also what makes us see-able. It makes our invisible variation of difference visible.

I’m not sure about you, but it is curious to feel seen.

#MasterLab Recap and Thanks

1-300x300Last week I attended #MasterLab, an advocacy event put on by Diabetes Hands Foundation through their Diabetes Advocates program. Overall the day was a spectacular success. Throughout this week, I will release reflections on specific talks. For now, a general overview of the event with gratitude toward the organization that made it all happen.

Brief Recap:

Not only did this advocate-centered event provide vital advocacy information about clinical trials, workplace protection laws, and legislation practices, but also gave time to discuss critical aspects of DOING the work, like prioritizing self-care, and being bold in the ask process. On top of covering a wide range of topics, MasterLab attendees were provided Advocacy Plan workbooks to begin PHYSICALLY drafting a personal advocacy plan. AMAZING, right?! MasterLab wasn’t just about hearing the information, nor was it just about bringing everyone together to foster community-support and groundswell around individuals’ advocacy efforts. MasterLab was about providing a practical formula for generating plans of action. It was a truly masterful event (please excuse that dad-joke, I couldn’t help myself). I will be sharing the advocacy plan I wrote and shared while in attendance at MasterLab in the next few days.

Sincere Thanks: 

I want to take a moment to thank everyone who made MasterLab happen. Diabetes Hands Foundation, you continue to add so much value to the community. I thank you for making us, the advocates, your advocacy project. Our community is more equipped and more organized in our advocacy efforts because of the events and resources you provide. Thank you.

Also, there were many sponsors who funded MasterLab itself, and also forked over a chunk of change for many of the advocates in the room to be there. Bringing us all together is vital to our success, and I thank every single sponsor that contributed to our physical togetherness.

Last but not least, I want to thank all of the friends who offered hugs and support at MasterLab. My life is better because you are in it. The tribe we have all made and are part of keeps me going in my own self-management, research, career, sanity, the list goes on and on. Thank you for being you and for continuing to attend these in-person growth-inspiring events.

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What is the Story We Tell?

The following post was inspired by the twitter chat #dsma on June 1st.  Diabetes Social Media Advocacy is a great organization in the diabetes online community that connects people with diabetes to the support they need via social media in many ways. The twitter chat using #dsma is one such method. With that said, this post is not diabetes-specific. It is rather, disability wide: chronic, physical, mental, acute, endocrine, and everywhere in-between.

knowledge

In 2013, scholars Eve Tuck and K. Wayne Yang published an article called “R-Words: Refusing Research.” I linked to the article in PDF form below and encourage you to dig in. It is a very wordy and theory heavy article; consider this your warning.

In this article, Tuck and Yang break down theoretical reasons why study participants (often referred to as ‘subjects’) may refuse participation and how the researcher’s role and goals play into that dynamic. As I read it, I engaged in a process of reflection. How am I doing as a researcher? Am I accomplishing the aims I set for myself at the outset of my academic career? Will the fallout be ethical?

The Tuck and Yang article is poignant in many ways, but two things in particular stick out to me as a member of a researched patient community.

  1. A researcher sometimes acts as ventriloquist by taking the words and experiences of study ‘subjects’ and manipulating them into ‘findings’ that afford credit only to the researcher.
  2. Emphasizing pain-narrative alone in a study is an exploitative act that may retroactively harm the population under study.

The first message listed above hit me pretty hard. I am a researcher and my goal is to facilitate the excavation and dissemination of discovery and truth. However, to do this, I feel compelled to appeal to the requirements of scientific rigor. I wonder, what could be the alternative? Could methodology make a difference?  I decided on the research approach called Participatory Action Research (PAR) because I wanted to avoid ventriloquism. The community members who volunteer are not puppets I use to explain a theory previously hypothesized. Rather, they (you/we), are the story, the evidence, the design, the conclusion. Without them/you/us, there is no study at all.

By doing research, I want to change the process of research itself. A person shouldn’t need a program, a MA, a PhD, to carry out a study. One ought only need curiosity and a well-inked pen.

Secondly, while my internal drive feels genuine, I cannot deny that doing this work may  inflate my position in the academy (the ivory tower). Thus, researching the diabetes community and eventually other health communities cannot be considered selfless by any means. I have a professional stake in doing this, and my success does depend on you: people with bodies that function a-typically. Though, as I consider my position as a researcher, I cannot forget my own place within the we under examination here. I am a person with diabetes even when I am not researching. I, too, have a body that functions a-typically. My primary identity and loyalty lies with the community. I research to ensure our knowledge and discourse is recognized as legitimate. We already know the answers to why peer-support improves our management, to how connection brings us from a place of isolation to community, to why the #DOC came to be. We already know.

The Tuck and Yang article posits that researchers often function within “settler colonial structures.” This means that researchers use the social structure of research and the process of building truth (through studies) in a way that maintains power dynamics as they are. By focusing on the pain-narratives (diabetes distress scale as example) of patients with various disabilities alone, researchers keep patients right where they are: at the bottom of the power-ladder crying for help.

 

I’ve noticed a focus on pain in our own stories via blogs and twitter and I one-hundred percent understand why. We live everyday in the kind of pain that no one can see, pain that we are good at hiding, pain with no physiological origin. Raising awareness about how hard it is to live with chronic illness, diabetes, chronic pain, so on and so forth, feels like justice. It feels like recognition for the hard work we put in to do what everyone else can do without effort. It wouldn’t be right to do all of this without getting a little credit, would it?

Where are we left, however, when the questions asked by researchers stop at hardships?When only our distress is measured, everything we create to balance that distress goes unacknowledged.

When the resources we create go unacknowledged, they fail to reach our comrades who need that access for survival.

Organizations like DiabetesSisters, Diabetes Hands Foundation, and The Betes Org., work to expand that access. Yet, their validation and legitimation depend on a medical structure fixated on what doesn’t work.

I am left asking where our community efforts fit in? Where are we and what is the story we are telling as a patient community, as a group of individuals living with impairments?  What can we do to move the emphasis of study from pain, suffering, and what doesn’t work to success, flourishing, and what does work? Further, if we found a way to do that, is it even what we would want?

 

 

Source: Tuck & Yang (2013) R-words Refusing Research

 

The Ideology of Ability

Tobin Siebers was a disability scholar. His book, Disability Theory discusses various disability discourses. Discourse, in the ivory tower (academia), does not necessarily mean conversation, though we can argue that through conversation discourse is created.

Rather, discourse in the ivory tower means the establishment of knowledge.

Who creates and maintains discourse contributes to who has and holds power within the institution of education. What is researched, how it is researched, and when it is researched are all maintained by this institution. This is not to say that the institution is plotting against us, as there is no one governing body making decisions about these things. What is important to remember, is that individuals working as mechanisms of this system are all influenced by their own subjectivity, and yet our set up tells us that objectivity rules the playing field – another topic for another time.

This post is about introducing something as invisible as many of our illnesses, but which impacts everyone with any kind of disability.

In the fashion of sharing information and challenging the system, I am bringing you an introduction to one of Sieber’s main concepts – the ideology of ability.

**Trigger warning**

The Ideology of Ability

And the damage done

It is within thoughts of no traceable origin that the ideology of ability resides; indoctrinated into your being before you were able to decide for yourself. Without your permission, your conscious consent, an idea that an able-body is a good body fused with your prevailing world beliefs. So deeply rooted is this notion and preference for an able-body, that its presence evades you entirely. So long as this untraceable thought goes unquestioned, you will likely never know it is there — lurking, contextualizing, meaning-making, translating for you what you consume, uncritically, undigested. As a result, you will financially and mentally buy into the market’s material and ideological solutions.

As a living person, you follow orders as best you can to maintain and enrich the health of your body. You will eat well, exercise often, and comply with any medical regimen prescribed to you. As a dying person, it will be with conviction you ensure loved ones that the real you, the you that exists wholly independent of the body now failing, will be waiting for them in heaven.

Unchecked paradoxical thoughts such as these, which inevitably subscribe you to the ideology of ability, will repeatedly fail to expose the cruel and indecent consequences befalling individuals who are not able-bodied. For those who do not meet the standards of ability for which you strive, there can conceptually be only a less-than body, a sad body, a body in need of fixing. Every bodily variation, then, every “disability”, will be axiomatically pathologized and ultimately ascribed inferior status as a human being. Because while the real you is not located within your body (an able-body), the real them is located within their body (a broken unkempt body).

You will generate general characteristics of the disabled as a lazy, unmotivated, and defeated people with low quality of life. You will see value only in the disabled person who transcends their bodily-diversity and becomes closer to able-bodied. In that disabled person you will see an exception to the rule; you will see some combination of talent, creativity, potential. In thatdisabled person you will see value and human-worth.

This one is special, you will think.

It is within an “ideology that uses ability to determine human status, demanding that people with disability always present as able-bodied as possible…” (Siebers, 32) that your sense of self flourishes.

Against this ultimate other, the disabled other, you secure your own human status, for so long as you are not one of them, the real you resides beyond the bounds of your body. The real you cannot be diminished, reduced to, or contained exclusively within the confines of your skin, just so long as you are not one of them.