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.)

 

 

 

 

 

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…

 

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.