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.

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On Saying Yes: Another MasterLab Reflection

Have you ever been witness to something unjust – someone being teased or treated unfairly? Chances are you have. Chances are also high that upon witnessing such an event, you have felt a specific kind of deep-seeded urge to somehow restore that balance and justice. However, if you are anything like me, that urge is often ignored. I push it away in fear of possibly making the situation worse or because I feel virtually powerless to help. What is more, this urge bubbles up for bigger events, too. For example, my injustice antenna alarms wildly when I hear about a person with a diabetes being hospitalized because they couldn’t afford insulin. I become simultaneously angry and helpless toward a system that unfairly discriminates against those living with chronic illness by making them pay for their life-sustaining medicines. I sometimes feel powerless to make any change to that system because I rely on it for my own wellness, and because I am just one single person. Being at MasterLab this year was eye opening in that it truly challenged the helpless part of my response to the injustice antenna going off.

One of the best talks of the day, and the only one that got a standing ovation, was given by Roniece Weaver, Executive Director of Hebni Nutrition Consultants, registered dietitian and author. She spoke about collaboration and sustainability when attempting to make change with underserved communities. Weaver began her talk with an array of statistics and findings from her own studies on nutritional educational program interventions. Her strategy was to provide nutritional education to communities who lacked access to such information. At first I was rolling my eyes.

I thought to myself, “Here we go another researcher blaming diabetes on individuals for poor food choices and ‘lifestyle factors’; Another researcher who expects that the prevalence of diabetes is a problem of the person and not the society and environment in which that person lives.”

However, about midway through her talk, Weaver’s tune changed. She shifted her position to include the social components contributing to health disparities between privileged and underserved populations. Weaver and her team went beyond education. They also brought produce to the mom&pop shops in food deserts that typically only served the usual gas station food options. Weaver said, “we needed to increase access to whole foods,” but doing so is “not about putting a big box store into a neighborhood, that wouldn’t be affordable.” In a place where food insecurity is high (meaning low-income, using food stamps etc.) opening an expensive grocery fails to meet people where they are at. Diabetes Advocate, Cara Richards tweeted the following:

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My ears perked up with surprise. Maybe Weaver wasn’t just another researcher blaming health issues on individuals over social conditions. Maybe Weaver was presenting something else entirely… Turned out, she was.

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Weaver’s whole message shifted dramatically in my eyes. Her research wasn’t blame-based, it was solution-based. What she shared next had advocates in the room tearing up. Weaver then told all of us about her own methods of advocacy and what practicing those methods did for one community.

Meet FreshStop, a produce shop on wheels.         bus_loading

The concept of FreshStop was inspired by a subscription box service called Blue Apron that delivers fresh produce with recipe cards for making quick healthy meals at home. Though innovative and convenient for those wanting to improve mealtime at home, Blue Apron is not affordable for the average joe. Weaver recalled her thought process, “How do you get something like Blue Apron into low-income communities?” How do we open up health-forward innovations to those who are routinely denied access? Isn’t that the question we all ought to be asking?

How do we increase the reach of the innovations and programs we advocate for to include those who perhaps need it most?

As a person with diabetes, I want tech advancement to happen because I want living with diabetes to be less of a burden on me. As an advocate, I want those innovations to extend beyond people like me who are privileged enough to have insurance, access to local knowledgable doctors, friends in the diabetes community, access to higher education, and time to self-manage. As an advocate, I know that for our system to be just and fair, all who are interested ought to have access to the medicine and medical equipment.

Weaver is a bold advocate and researcher who is a living example of how to extend innovation beyond the bounds of privilege. Her work reminded me that I am not powerless  within the system that perpetuates injustice and health-disparities.

At MasterLab, through Weaver’s talk among many others’, I learned that giving in to the feeling of powerless is but another way to say no. And, I don’t want to say no. I want to act on that urge I feel to restore justice when witnessing unfairness. I want to give up passivity and try harder.
And I know that the only way I can create change is if I try.
The only way to go beyond the bounds of privilege is to reject the feeling of powerlessness and say YESgiphy

Yes, I can stand up to injustice.

Yes, I can be creative and find solutions that go beyond the bounds of privilege.

Yes, I can be an agent of change.

Yes.

 

Pre-Conference Excitement: MasterLab Edition

Diabetes advocates are my favorite people and I get to see many of them in just a few days. Suffice it to say I’m a little more than giddy. I’m practically bouncing out my chair right now as conversations in the Facebook group turn to packing tips and roommate assignments.

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My current mood

So what is bringing all of us together?

MasterLab!!

MasterLab is a diabetes advocacy event hosted by the Diabetes Hands Foundation through their Diabetes Advocates platform and program. To make things better for attendees (e.g. patients who have medical bills for days) they offer a number of scholarships that include travel and hotel stay. I received such a scholarship, making my own attendance possible.

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Tearfully grateful

Why is MasterLab so wonderful? Well, they bring in speakers who deal in advocacy as it related to diabetes and as it related to disability in general. Speakers like Mark Heyman (who I am personally indebted to for editing the application that got me accepted to graduate school) are sure to both inform and inspire. At what other event can you find a lineup of speakers who so broadly address matters of advocacy geared toward the advocates themselves?

The following are taken directly from the Diabetes Advocates MasterLab event page. Two  of the offered sessions are:

  • “Diabetes and Mental Health: Advocating for Others While Taking Care of Yourself” Dr. Mark Heyman, Center for Diabetes and Mental Health. Mark Heyman is a diabetes psychologist, person with type 1 diabetes, and Founder and Director of the Center for Diabetes and Mental Health. We will learn how can advocates communicate the psycho-social and emotional challenges of diabetes in their advocacy work and take care of themselves in the process.

AND

  • “Building Collaboration and Sustainability in Programs for Nutrition and Access, in Underserved Neighborhoods”. We will learn from Roniece Weaver, Executive Director of Hebni Nutrition Consultants, Registered Dietician and author, about how she has brought health messages to underserved populations in Orlando, in a different delivery mode. This is a great example of the opportunity  that might exist in your community, to work offline, make a difference and support local, smaller organizations.

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Aren’t those amazing!?

Is your mind completely blown like mine was?!

If these descriptions appeal to you, but you are not attending MasterLab, fear not!

I, along with many other advocates, will be there live-tweeting and blogging about everything we learn.

If you are interested in participating in the live-tweeting, follow me here @HeatherGabel, and make sure to check in with #MasterLab.

You will not miss a thing. Promise.

See you at MasterLab!

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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

 

Diabetes Blog Week: Illness Imagined

giphyWell, it is day four of Diabetes Blog Week and the topic today is about our experiences with
healthcare. In this post, I shift the focus a bit to an ideological issue I see as pervasive in the medical community. It has to do with imagined hardship.

Last year, while working as a bartender, a woman pointed to the tattoo on my arm that reads “DIABETIC” and asked, “are you diabetic?” I responded, “yes, I have diabetes.”  It was a slow day at the bar, so I entertained her string of run-of-the-mill diabetes questions.

No, diabetes is not as dichotomous as you would think. No, cinnamon does not reverse it, nor is there a cure.  Yes, I do take multiple daily injections and prick my finger many times a day.  And finally, yes, it could be worse.

Then, the woman offered me credit for my medical efforts, “Uh, I cannot imagine,” with the usual doom-and-gloom tone.

To me, her words translated to, “Your life must be awful.” I went home and reconsidered the disease-acceptance I had built up since the last conversation like this, about a month before. Even a little suggestion that the way I live is far from ideal is a reminder that others would not opt for my life circumstances. “No one would want this” is the thought I am left coping with.

There is a researcher named Peter Ubel who, along with colleagues, compared the way non-sick and able-bodied people expect to feel at the onset of a diagnosis, and the way sick and disabled people actually feel post-diagnosis. Ubel’s findings suggest that non-sick and able-bodied people are poor assessors of quality of life given medical complications mainly because they fail to incorporate adaptability into imagined scenarios.

Individuals like the woman I interacted with, can be narrowly focused on the potential pain of shots or the inconvenience of monitoring blood sugar. These individuals might play out one or two scenarios in which the mentioned diagnosis would limit a freedom they value. As Ubel mentions, the notion of adaptability is absent in the snap judgement used to decide the desirability of a particular lifestyle.

When we form an idea of what life would be like given X circumstances, we miss something. Malcolm Gladwell, in Blink: The Power of Thinking Without Thinking says, “We have, as human beings, a storytelling problem. We’re a bit too quick to come up with explanations for things we don’t really have an explanation for.”

In the context of today’s topic, I draw attention to the fact that among the individuals who overestimate the decline in quality of life given a new diagnosis, who underestimate adaptability, who form incomplete explanations based on limited information, are doctors.

Healthcare providers are not immune to faulty expectations. The trouble we face as a result of faulty expectations are the subsequent treatment options provided.

In my own healthcare experience, I’ve been denied CGM coverage because my management wasn’t ‘good enough.’ I have also been denied disability status because my doctor didn’t see diabetes as a disabling disease (put another way, my illness wasn’t ‘bad enough’).

My biggest frustration with our healthcare system is that the person with the least decision-making power is me, the patient.

I believe this stems, in part, from a system that elevates the physician’s, the payer’s, the industry’s perspective over mine. It stems from a system that values my life less because of diabetes.

Source: Ubel, P., Schwarz, N., Loewenstein, G., & Smith, D. (2005). Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology, 24(4), S57-S62.


Click for the The Healthcare Experience – Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Diabetes Blog Week: Tuesday Take-Away

 

Welcome to Day 2 of Diabetes Blog Week. The topic revolves around the mental and emotional aspects of living with diabetes and what each of us bloggers does to cope with the stresses diabetes brings.  The coping mechanism that suits me best as I move through the trials of diabetes is curiosity. Becoming a researcher in diabetes isn’t a selfless one. When I am working on untangling the intricacies and complexities of diabetes, I am happier. I am steeped in project and connection when I am interviewing, coding, reading, and learning. xt9dpldjhzzktonen6

For example, learning that there ARE researchers who are proposing the application of complexity theory to diabetes clinical practice thrills me! What thrills me more is knowing that I bring some of our perspective to this growing body of research.

All of this researching helps me cope personally, but it also boosts my pride in our community. As we dig deep and write about our experiences, researchers are fumbling to explain it in academic terms. It makes me want to send each and every one of you GIANT virtual hugs all the time for being so wonderfully in tune with your mind, spirit, and body.

If I were to suggest anything to a PWD experiencing burnout, it would be this…

“Never let a good crisis go to waste.”

As hard as it is to write during burnout, let us try. Because our stories ARE data, our words are future findings. Knowing that the power of our hardships can be collected and explored is extraordinary. I don’t know about you, but that’s enough to keep me going.

If you want to look up the complexity theory in diabetes practice, here is a good place to start: Cooper, H. C., & Geyer, R. (2009). What can complexity do for diabetes management? Linking theory to practice. Journal of evaluation in clinical practice, 15(4), 761-765.


Today’s Topic: Click for the The Other Half of Diabetes – Tuesday 5/17 Link List.
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Diabetes Blog Week: Message Monday

I am beyond thrilled to have started The Chronic Scholar blog in time for the Seventh Annual Diabetes Blog week! Karen over at Bitter-Sweet Diabetes is such a gem in our community and I am so thankful for her work here.

Today’s topic was my suggestion. I wrote this suggestion under the impression that our sense of community may be strengthened by it. Our collective sentiments are representative of our community, and possibly people with diabetes in general. How often do we look at and examine our message though? How often do we analyze the effectiveness, possible results, and second-order consequences of the sentiments we articulate through our stories? I personally wanted to opportunity and space to explore my main diabetes messages, so I am extra thankful to Karen for picking this topic.

I haven’t been the first PWD to admit today that my message has changed over the course of writing a blog. I started it when I was working in the Bay Area at The Diabetes Hands Foundation and am now with DiabetesSisters and a second-year PhD student in Disability Studies in Chicago. I’m thankful for blogging, in retrospect, because it shows my changes over time. I get to read how I was feeling four years ago. What a wonderful opportunity.

With that said, what are the messages I put out into the world via my blog, and what do I hope they accomplish? Well, below are my top two messages. Both stem from personal experience, the latter from my studies in critical theory, and they speak to one another.

Message 1: Diabetes looks like everyone you have ever met, no matter the type, no matter the circumstance.

Can type 1 look like a child? Yes. Can it also look like a grandparent? Yes.  Can type 2 look like a child? Yes. Can it also look like a grandparent? Yes. And everywhere in between. Diabetes does not discriminate, nor does it choose its vessels based on ‘lifestyle.’ The most important message I want to spread by telling personal stories is that diabetes is more complex than the one-dimensional caricature blasted through popular media.

Message 2: When persons with type 1 set themselves apart from type 2 by saying things like “Type 1 means I did nothing to cause this,” we are inevitably strengthening the type 2 stereotype we are attempting to distance ourselves from to begin with.

This is a tricky message to share and to explain. It is complicated and has a couple of moving parts. Moreover, this second message is a reflection of how my messages have changed over time. When I began blogging, I wanted the world to know about type 1. I wanted my friends and family to know that what I endured everyday was more difficult than Wilfred Brimley made it sound. I wanted Ellen to tell the internet and Hollywood to stop confusing my disease with someone else’s.

It was with great humility that I began to witness the second-order consequences of my message and mission to educate. By demanding there is a difference, I reinforce that difference; I authorize it. In this scenario, I, as the educated patient give permission to those being educated to continue believing that type 2 looks they way they think it does, fat and old, bad and sad.

Simply separating myself and my diabetes from THAT type 2 diabetes, I do nothing to fight stigma, but in fact reinforce it.

The message which I stand by now has been my hardest diabetes lesson thus far. As I continue to move through life with this disease, with this plastic pancreas hooked at the side of my jeans, I will be watchful of the impact of my messages. I will allow for humility to guide me, espicially when my righteousness is called into question by doing so.

 


Today’s topic:  Click for the Message Monday – Monday 5/16 Link List.
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

 

 

 

 

 

UnitedHealthcare Policy Change: A Systemic Issue

Diabetes Supplies

Earlier this month, UnitedHealthcare announced a policy change that impacts people with diabetes of all types. As established by a new partnership with Medtronic, UnitedHealthcare has dedicated a “preferred Durable Medical Equipment provider” through which to cover.

DiaTribe’s article  explains the impact of this new policy on patients:

“If you are currently on a non-Medtronic pump and have United insurance, this news has no immediate impact. Your pump supplies will be covered as long as your pump is under its four-year warranty and still functioning properly. Once your pump goes out of warranty and/or breaks, however, you will be required to switch to a Medtronic pump.” – Adam Brown and Kelly Close

As a patient, potentially facing coerced changes in my medical delivery regimen, I must FIRST look at who is responsible. Is it Medtronic? It is UnitedHealthcare? Or could it be but a glimpse of something far more harrowing?

Do you remember in April 2014, when the New York Times journalist, Elizabeth Rosenthal published an article entitled, “Even Small Medical Advances Can Mean Big Jumps In Bills.”  Rosenthal’s main argument, that small diabetes tech innovations are little more than planned obsolescence, was heavily contested in the Diabetes Online Community. Just as we are seeing with this UnitedHealthcare’s policy change, advocates are now taking action. Bloggers are sharing their stories and outrage over the loss in autonomy and choice resulting from this venture. One advocate, Mike Hoskins, bravely went a step further by sharing this daring piece which suggests a personal boycott of Medtronic products.

Coverage of advances and innovative technologies and treatments for persons with diabetes is threatened beyond the reach of the media and beyond our storytelling efforts. Perhaps a larger contributor to and influence over cost-benefit analysis performed by insurance companies, are the guidelines set forth by biomedical ethicists. In the dangerous line of declaring right and wrong, bioethicists’ works are subject to misinterpretation. Consider the following discussion of ordinary verses extraordinary treatment.

 

Beauchamp and Childress, authors of the widely-circulated bioethics text, Biomedical Ethics, set for distinctions between what is to be considered an ordinary or extraordinary treatment. Ordinary treatments, or those which cannot be omitted or declined are likened to “obligatory”, “customary”,  “natural”, “noninvasive”, “inexpensive”, or “routine” treatment. In contrast, extraordinary treatments, or those which may be legitimately omitted or declined are likened to “non-obligatory”, “unusual”, “uncustomary”, “complex”, “artificial”, “invasive”, “expensive”, or “heroic” treatment. While the authors draw attention to the danger in such a broad categorization, calling it “morally misleading” and too subjective, they fail to address a most vital question. Who decides?

In the cost-risk-benefit analysis behind every decision about a course of medical treatment, whose expertise is most valued? Who gets the final say? The doctor? The patient? The insurance company? The answer is not the patient, for if it was, every patient would have the medical devices they see fitting for their lifestyle. Nor do the doctors get the final say, for if they did, every patient would have the medical devices recommended to them by their doctors. By process of elimination, then, the answer of who decides whom gets a certain treatment, is the insurance company. By looking to the ethical guidelines on distinctions between ordinary (inexpensive) or extraordinary (expensive), the insurance companies can justifiably (legally) deny a person with diabetes access to an innovate management device. The same continuous glucose monitor a diabetes caregiver and advocate credits for saving her daughter’s life is deemed ‘unnecessary’, “complex”, and ‘expensive’ by her insurers. In the dangerous line of declaring right and wrong, bioethical guidelines, by proxy, threaten access to advancing technologies for people with diabetes.

Why do we need to consider texts like Biomedical Ethics? Because it is a mechanism of a MUCH BIGGER systemic issue, and we cannot ignore it.

However, what’s more, we need to go even one step further. For if the insurance companies CAN BE BOUGHT, if their cost-analysis can be swayed by the manufactures and sellers of specific treatment options, then the above analysis fails. It fails because the maker of  supplies covered is given systematic and legal permission to offer said companies large payouts for partnership. That is, large producers of medical equipment are now the ultimate decision makers.

Our problem is about the allowance for competitive bidding at all. Why do our laws permit the sacrifice of the health and wellness of our people for the greed and capital-growth of a business?

We cannot stop our advocacy efforts at a boycott, although starting there is an excellent idea.   The fact that Medtronic was able to outbid every other pump company (to begin with) simply  is a product of their already pervasive monopoly over the market. Medtronic has industry influence because our laws ALLOW for them to.

We aren’t dealing with one greedy pharmaceutical company and a payer driven solely by their profit-margins. We are dealing with a healthcare system saturated with the values of capitalism, rewarding the diminution of patient-physican autonomy with profits. We are dealing with a systemic issue far greater than this one venture.

All things considered, protesting a systemic issue is a HUGE undertaking.

Many online advocates have already addressed the issue using hashtags like #DiabetesAccessMatters and #PatientsOverProfit. Mike Hoskins of DiabetesMine recognized many advocates and listed many suggestions for patients in the diabetes community on how to begin that process.

One of the suggested actions coming up which DOES ADDRESS A BIGGER ISSUE is the DPAC Tweet-in on May 12th. DPAC_Tweet_In_May-768x768

 “Diabetes is self-managed and everyone’s management is individualized.  Patients and their healthcare teams should define the best path for living well with diabetes. Government bureaucrats and insurance company cost accountants should not veto doctors’ orders.”

 

It is time for us advocates to use this glimpse of a faulty system as motivation to take action against a much larger systemic issue impacting not only everyone with diabetes, but every single patient in the Unites States.

A big job lays ahead of us. Are you ready to take action?

 

 

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.