The Things They Don’t Want To See.

Last fall, I took a class called Disability and Culture. In said class, students were required to develop and produce a creative project about disability-related conundrums.

Disability conundrums are complex dilemmas. They have no right answer and the more you try and find one, the more fuzzy the situation becomes.

Consider the act of staring.

Curious children with limited exposure to disability stare at disabled people in public places because they are seeing something unfamiliar. The guardian of a staring child will likely correct this behavior, saying “it’s rude to stare.” That child learns a lesson through the repetition of this process: don’t look at disabled people (or pretend like you aren’t looking). And as that child grows into adulthood, they carry this lesson into public situations. Overtime it morphs into a cultural norm.

If the cultural norm suggests you ought not look at disabled people because doing so is rude, what are the consequences? The first consequence is that disabled people go unacknowledged, literally ignored. Invisible in public because those around them have been taught (socialized) to believe that non-acknowledgement is kinder than staring.

Imagine now, an able-bodied adult becomes woke (being aware of – as it relates to social injustice) to the consequences of the “don’t stare” norm. This adult actively decides to break the social norm. The adult spots a person in a wheelchair rolling into an accessible cafe, and does the inconceivable. The adult looks. Instant discomfort. Cue inner-dialogue: “oh no, did I look too long? Are they offended? Should I smile? Is a smile patronizing? How would I smile at a stranger who wasn’t in a wheelchair? okay. Do that. Smile like they aren’t in a wheelchair. Shit. That wasn’t right. They look offended. Walk away… quickly. Why was that so awful? uh. Never again. ” The adult, feeling both embarrassed and rude, decides the effort wasn’t worth the resulting discomfort. The adult assumes that the interaction was equally uncomfortable for the wheelchair user and so also feels guilty. The need for the social norm of “don’t stare” is affirmed, and the adult goes on with their life trying to avoid exchanges with disabled people believing -with experience as evidence- doing so is what is right for both parties.

Here in lies the conundrum: to stare, or not to stare?

Is it better to look at the risk of an uncomfortable encounter, or better to continue not looking at the risk of reproducing the invisibility through which oppression is born?

At first, it seems rather obvious, doesn’t it? If we are trying to create a more just world, risking uncomfortable encounters is preferable to risking the continuation of inequality. However, there is more complexity here. This question requires us to examine the power dynamics between the two groups currently and historically. Okay. Say we do this… We might determine that, given the history of oppression and the current demand for physical and mental ‘fitness’ and of having a species-typical fully-functioning body, disabled people hold less social and economic power than do able-bodied people. The problem with power, is that those who have it tend to prefer keeping it. Despite idealizing a more equitable and just world, when getting there comes to giving up power, we find ways to justify keeping the power balance as is. That is, we accept injustices when they threaten our own sense of power AND when we can find a way to disguise or justify the problem.

The adult discussed above left the interaction filled with assumptions about how the encounter must have been for the disabled person. The adult feels justified to not look at disabled people because in their mind, not looking is more comfortable for the disabled person too. The justification comes from the same place of righteousness that does a guardian’s correction of a staring child. Able-bodied people tend to believe that if they themselves were disabled, they would prefer to not be stared at.  Because it is their imagined preference, they project it onto those who live the imagined situation.

While the conundrum begs the question: to stare or not to stare, the central issue is not about staring at all. The central issue comes down to assumptions. It comes down to the powerful making assumptions about (whom they perceive to be) the powerless based on imagined futures. This means that the social norm which seems to exist to protect disabled people from rude staring exists not because disabled people asked for said protection, but because able-bodied people imagined that they would want that protection if the tables were turned. “If I were in a wheelchair, I’d hate it if people stared at me.”

Assumptions about what disabled people think and feel, about how they live, how they hurt, and how they experience interactions with able-bodied people are what hold up and maintain the injustice.

As a person with diabetes, as a disabled person, I want change.

I have found that clinicians, researchers, and even friends and family see only the parts they want to see. They look enough to affirm their expectations and imagined aspects of what diabetes and disability must be like. They assume the rest.

For the class I took last fall, I decided to take up staring as the conundrum for my project because I want to challenge assumptions. The result is this blog post and the subsequent video.

As a person with diabetes, as a disabled person, I make change.

Here, I control the staring. I speak for myself and my experience cannot be imagined. I make the viewer see what I want seen. I demonstrate the hardship of diabetes on a social level. The hardship is not about the needles. It is not about drawing blood. Although, I do call for staring at those things as well. The hardship of diabetes demonstrated here is about being perceived through the lens of an imagined future.

As a person with diabetes, as a disabled person, I am change.

My existence is not limited to the imagining of what it must be, but it is impacted by the knowledge that what I do to survive consists of the things they don’t want to see.

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.

Could it be the Novelty?

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Many of us (people living with diabetes) share a story: we have experienced periods of isolation due to diabetes-specific challenges. Some of us went years before ever meeting another person living with diabetes. And perhaps most pertinent to Diabetes Online Community (#DOC) members, we know that magical feeling of complete relief when we are finally able to say it like it is to those who understand.

When I consider my own experience as a DOC community member as evidence of the power of peer-support, my assumption is that the DOC works for two main reasons:

  1. because it removes the barrier of isolation and
  2. because it is stacked with insider-generated knowledge on how to live better with diabetes

There are MANY additional reasons that explain why the DOC helps people with diabetes. You probably have a laundry list of reasons and I encourage you to add them in comment form here. Another part of the story we share as people with diabetes are the reasons why and how our sources of support serve us. A question I’m trying to answer through my own research, is “what is it about participating in the DOC that most benefits people with diabetes?” I want to find that one magical bean that keeps all of this growing and thriving.

A new article published in Personality and Individual Differences, The Official Journal of the International Society for the Study of Individual Differences (ISSID), offers a perspective I hadn’t previously considered. The open-access article is called, Understanding the need for novelty from the perspective of self-determination theory, and can be found below:

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This article proposes that novelty, explained as a drive to ‘seek out new experiences’, could be an intrinsic and universal human need. The findings suggest that seeking new experiences is a mechanism of self-motivation necessary for optimal self-realization.

“Furthermore, if people do not seek novel activities within the tasks they do in the workplace or in leisure time, they will likely experience boredom and maladaptive outcomes like low self-worth, negative affect, low life satisfaction and psychological well-being.” (González-Cutre et. al, 2016).

If their assumption is correct, then its application toward the diabetes self-management corpus is a natural fit! Doing the same diabetes-tasks over and over leads to burnout. Our lived-experience shows us this. If my insurance wont cover alternative therapies like insulin pumps, continuous glucose monitors (CGMs), oral medications, etc, and or my doctor isn’t comfortable prescribing them, then how can I integrate a variety of novel tasks into my self-management toolkit that could potentially reduce the frequency of burnout?!

When my self-management becomes monotonous and boring, I do experience maladaptive outcomes like those mentioned in the excerpt above. My perception of self-worth decreases. That is to say that in burnout I literally feel like I matter less, am worth less, deserve less. Experiencing this sensation is incredibly maladaptive and generally leads to a slew of other problems. My health suffers, but so do my relationships, scholastic capacity, dependable-ness, and inner-drive.

Burnout, therefore, is a HUGE reason I need the peer-support I seek. I need to not only talk about the challenge, but also to hear novel ways in which others like me have transcended the process.

With that said, my experience is only one perspective and is not representative of the diabetes community as a whole. My question to you then, DOCers, HCPs, researchers, is could it be the novelty?

Could it be that when a person with diabetes encounters the world of the diabetes online community, that the novelty itself is a mechanism of its success?

If we, yes, agree that novelty is one aspect of why the DOC works, then what else can we know? Is novelty directly related to burnout cessation, to a decrease in diabetes-related distress? How can we use this as a community to inform the resources we offer?

 


Citation:

David González-Cutre, Álvaro Sicilia, Ana C. Sierra, Roberto Ferriz, Martin S. Hagger, Understanding the need for novelty from the perspective of self-determination theory, Personality and Individual Differences, Volume 102, November 2016, Pages 159-169, ISSN 0191-8869, http://dx.doi.org/10.1016/j.paid.2016.06.036.
(http://www.sciencedirect.com/science/article/pii/S0191886916307863)

 

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:

Screenshot 2016-07-06 10.01.25

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.

Screenshot 2016-07-06 10.15.42

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.

 

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: Wordful Wednesday

The topic for today asks bloggers to discuss their diabetes language preferences. What does each blogger prefer? “Person with diabetes”, or “diabetic”? I’m thankful to the community member who proposed this topic, because my views on it have somewhat shifted since I wrote about it last. My perspective changed because I’ve learned some disability history!

Below is a visual conception (or formulation) of each way to refer to living with diabetes. I drew it just over a year ago. It not only reflected how I felt about modifiers, but also was a source of pride for me. I had found a way to eloquently express how I experienced subtle language variations.

Screenshot 2016-05-16 23.18.00

However, after delving into disability studies and the critical theory and history that make it up, I have begun to reconsider my formulation.

Did you know that the language we tend to use in the United States is called “person-first language?” It’s a thing! We have a thing! Our community PRACTICES a theoretical (albeit historical) formulation that one can read about in academic texts!

How stinking’ cool is that?

Person-first language is formulated to address the dehumanization that can occur when a person is addressed as a disablement (in this case as diabetes) rather than as a person. Hence, in order to respect an individual’s personhood, “person with diabetes” is suggested. Person-first language isn’t used everywhere, though. This is the part that really hooked my interest as a patient who tends heavily toward person-first language.

An alternative is called identity-first language and it formed, in part, as a rejection of person-first language.

A person who tends toward identity-first language might say:

“I’d prefer you call me diabetic because I recognize that being diabetic does not decrease my personhood. I prefer this because I reject the idea that diabetic is a derogatory word.”

In this formulation, identity-first language actually fights stigma by rejecting the negative association all together! It functions to TAKE BACK the word completely! What’s more, it is used as often in the UK as person-first is here!

WOW! Right? Is this stuff mind-bending or what? Could the words we use be dictated by what region we are diagnosed?

After being exposed to identity-first language, what I can certainly say is that my feeling of righteousness when using person-first language is shaky at best.

Take this discussion as food for thought because there is no right or wrong, there is only what works for you. What we can do is make a choice and stand by that decision as informed patients.

What sits right with you?


Today’s topic: Click for the Language and Diabetes – Wednesday 5/18 Link List.
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Seeking Volunteers for Class Project

I am currently developing an instrument to measure community participation. I am searching for 10 individuals who might be willing to take the survey, and then provide feedback for what I missed, what works well, and what ought to be changed.

If you would like to volunteer, send me an email at: hgabel3 @ uic . edu

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?

 

 

Hello and Welcome

Welcome to my new blog, The Chronic Scholar! Here I will be bringing what I learn through my PhD program in Disability Studies at the University of Illinois at Chicago to you!

I’m thankful for this opportunity to bring together patient experience and advocacy and the research that talks about it! Got questions? So do I! Let’s ask them together.

diabetes disability

Here is my first question…

According the Google Ngram, diabetes and disability are two words that have almost the exact same incidence of mention in literature since the 1800’s. Why is this such?

So, patient advocates, why could this be? What are the bumps from, and why has our focus shifted so much?

I’m Heather and as your Chronic Scholar, I can’t wait to figure out why…