Diabetes Blog Week: Day Two – CO$T

So, today in #dblogweek, we talk dolla dolla bills ya’ll. Just a forewarning…

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Below is the prompt:

Click here for the The Cost of a Chronic Illness – Tuesday 5/16 Link List – Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)


My Response:     (… warning rant coming) 

Last September, when I turned the lovely age of 26, my insurance changed.  My new insurance covers about 80% of all durable medical equipment. There is no deductible, and no co-pay. I just have to pay 20% of whatever I need. Seems reasonable.

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After nearly ten years of pumping, I was forced back to multiple daily injections (MDI) because my income wouldn’t allow for that 20%. So here I am, about eight months later, still royally pissed about it all. I’m not upset that I have to use MDI. I’m doing really well with it, best management in a while actually.

What I am upset about is the fact that my insurance is allowed to dictate what treatment and therapies I use by covering the cheaper options at a higher rate. I’m infuriated by the fact that our healthcare system prioritizes their bottom-line above my health.

In the past, I’ve argued the case that all chronic illness = disability –> because of the cost. In the US we are made to pay for the care and supplies we need to survive. The lives of those with more resources are seen as more valuable than are those without. This is undeniable if you just look at the rhetoric we use to talk about healthcare.

We talk about freedom – freedom to choose what kind of healthcare you want. Freedom to not help pay for your fellow citizen health, because what’s it to you anyway? Here’s the problem: We have a fundamental and systemic attribution error occurring EVERYWHERE. When a poor person relies on medicaid for insurance, we assume they are lazy free-riders. That is, we attribute their use of government funds to their character, or lack thereof. However, when we get fired and are forced to rely on government assistance to make up the income, we attribute our own use of it to circumstance.

At a systems level, people with chronic illness are punished through forced expenditure. My body doesn’t meet the norm. It requires more. So, I am automatically and forcibly entered into a market, in which those who do  meet the norm will never need to “choose.”

So, my “freedom” as a chronically ill person, is to choose between a therapy that costs me $500/month out of pocket, and a therapy that costs me $200/month.

It doesn’t feel like much of a choice at all. It doesn’t feel like freedom.

It feels like discrimination and deception.

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Diabetes Blog Week: Day 1

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I’m so happy it is May already and it is Diabetes Blog Week!! Thank you to Karen at Bitter-Sweet Diabetes for once again hosting this important week. EIGHT years folks! Woop-Woop!!

Today’s prompt is: 

Click here for the Diabetes and The Unexpected – Monday 5/15 Link List
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

When diabetes doesn’t play by the rules I suggest the following:

When you are unexpectedly hyperglycemic:

  1. Keep a mini-trampoline handy. In my experience it works best at activating the insulin you already injected or pumped in. giphy2
  2. Have a low-carb, low-protein snack handy for when you get the high-blood glucose hungry hungries going on. When blood sugar is high, we want to not make more work for the kidneys by asking them to process more protein. Pick something like sugar free jello and eat as much of it as you want. Mmmmm. Jello. giphy3
  3. When you are in range, tell your friends and family that you can be kind of a bummer-tastic a-hole when your blood sugar is high. But you don’t like being this way, so tell them winter is coming. That way, when the hyperglycemia comes on, they know to be more sensitive to you.  giphy4

When you are unexpectedly hypoglycemic:

  1. If you’re like me and tend to eat all the things when you are low, at the ten minute mark, take insulin for the carbs you ate minus 15-20 grams (depending on the low – also CONSULT YOUR DOCTOR FIRST). We might get a little fluffy doing this, but it is better than skyrocketing up to the 300 post low! giphy5
  2. Be kind to yourself. Lows happen. giphy6

Welp! That is it for me today! See ya tomorrow!

An Open Letter to The National Institute of Diabetes and Digestive and Kidney Disease (NIDDK)

Dear committee members of The National Institute of Diabetes and Digestive and Kidney Disease,

I am Heather Gabel, student researcher at University of Illinois at Chicago, diabetes advocate and fellow, and blogger in the diabetes online community. I would like to thank the committee for hearing my perspective of the funding structure and policy of the National Institute for Diabetes and Digestive and Kidney Disease (NIDDK) and what the American Diabetes Association is doing to confront the problem of inadequate psychosocial care and treatment for people living with diabetes. I write to you today, committed through professional and personal experience, driven by an impassioned need for change for the diabetes community. I believe that change starts where knowledge is produced: in the labs and research centers working tirelessly to reduce the burden of diabetes.

Diabetes has been called an epidemic in the United States. Nearly 30 million people have been diagnosed and 81 million either prediabetic or undiagnosed, making up just over 29% of the population. The media, the public, and doctors alike see diabetes as a killer; a killer of the economy, a killer of people, a killer of life as you know it. Diabetes is the thing your family member doesn’t take care of. It’s the little voice in your head telling you not to eat an unhealthy meal. Diabetes is the joke no one laughs at anymore. Diabetes is linked with obesity, kidney disease, and many other terrifying complications. Because diagnosis rates are still rising and the costs associated with its maintenance and care continue to skyrocket, billions of dollars have been thrown at curative research and the development of technologies and therapies to reduce those costly complications of poorly-managed diabetes. What is even more striking, is that despite all of the funding, which is estimated at about 1 billion dollars in 2016 alone, 15 million of the 30 million diagnosed do not meet even the basic health outcome goals set forth by the American Diabetes Association. I’ll repeat that again. Fifty-percent of all people living with diabetes in the United States are considered non-compliant. And I will be the first to admit that I am among them.

I was diagnosed with diabetes when I was eleven years old. I have worn an insulin pump for 10 of my 15 years, and been on injections the other five. I have checked my blood glucose over 33,000 times. I’ve seen my endocrinologist 4-8 times per year since diagnosis. I spend about 8,000 hours per year self-managing my diabetes. And, I have been wearing a continuous glucose monitor for the last three years. I am here to tell you that all of this is not enough. I, like the other fourteen-million nine-hundred ninety-nine thousand, nine-hundred ninety-nine people with diabetes not meeting basic health outcomes in the United States, do not have the things I need to be healthy.

You see, managing diabetes doesn’t end after the finger stick and the injection. Conversely, my own experience leads me to believe it doesn’t even start there. Diabetes management is about more than the medical procedures; it is about balancing the psychological and social nature of living with a disease that requires eight-thousand hours of self-management per year. Diabetes is about navigating relationships jeopardized by the irritability that comes with elevated blood glucose. It is about accepting the forever of it all. Diabetes is about preparing for every meal, every walk around the block, every trip to the grocery store, every day at work with precise tools and backup plans.  The problem in the United States is that our health care system largely fails to recognize these psychosocial elements of diabetes at all. Diabetes is a complex disease treated with only with simple solutions.

On November 22, 2016, the American Diabetes Association released a position statement to address the staggering rate of sub-optimal health outcomes in the diabetic population. They argue that diabetes “management cannot be successful unless lifestyle and emotional status of the individual is taken into consideration”. The position statement, geared toward providers, pushes for a more complex plan for diabetes care and treatment. It urges practitioners to focus on the psychosocial elements of diabetes in their practice. I’m thankful to the American Diabetes Association for releasing this pivotal position statement. They are the first major diabetes organization in the United States to do so. With that said, addressing solely providers does not quite go the distance.  Because research on the psychosocial elements of diabetes has only gone so far as to demonstrate that there is a substantial unmet need within the diabetic population, solution-based treatment plans have yet to be developed. The American Diabetes Association is going to begin training providers to identify diabetes-related psychosocial problems in their patients, but because there are no evidence-based treatments specific to diabetes, their training will stop there. If providers are able to identify but not treat a psychosocial problem, the problem persists. People with diabetes will continue to not get the things they need to be healthy.

This is why it is so important to begin shifting the focus of diabetes research toward psychosocial interventions, therapies, programs, and services. Given the complex nature of diabetes, and evidence demonstrating the development of psychosocial problems resulting from it (such as diabetes distress, anxiety, disordered eating), we need this shift to lean toward solution-based research. We need to look for and test a multitude of programs and supports with the potential to reduce the psychosocial burden of diabetes. Perhaps if we can identify solutions to the psychosocial problems, we will be able to live in a country where a higher percentage of people with diabetes meet basic health outcome goals. Perhaps we can even live in a country where people with diabetes are able to thrive just as any other American would.

We have to start creating a system of care that provides what is needed. I believe we can do this by pivoting the research priorities at the National Institute for Diabetes and Digestive and Kidney Disease toward solution-based psychosocial therapies. I ask the committee to consider forming a new tier of research dedicated to this work. There are several community organizations like the Diabetes Collective Inc., DiabetesSisters, Diabetes Hands Foundation, and College Diabetes Network, who have generated and continue to provide psychosocial services to people with diabetes in the U.S. Their collective service-base is in the millions. Leaders of the these organizations, namely, Christel Marchand-Aprigliano, Anna Norton, Gene Kunde, and Christina Roth respectively, are eager to partner with researchers examining psychosocial problems. The capacity is there. The community is willing and able.

We must make this shift because diabetes is not the thing your family member doesn’t take care of. It is the thing they need help with. Diabetes is only a killer when we fail to discover alternative therapies and supports for those impacted by it. Diabetes is not a disease easily managed. It is a complicated, messy chronic illness that interferes in every life experience. We have a responsibility to discover innovative interventions and therapies for the 15 million people living with diabetes in the United States, myself included, whom are being failed by the current medical system despite everyone’s best efforts. We have a responsibility to extend our research beyond the bounds of finger sticks, injections, and the like. We have a responsibility to generate the evidence-based research needed to adequately train providers to move beyond identification of a problem and toward the delivery of a solution. The National Institute of Diabetes and Digestive and Kidney Disease, as a generator of knowledge, has a responsibility to field diabetes-specific psychosocial research. As a person with diabetes, I implore each committee member to consider the potential impact doing so could have on people with diabetes in the United States.

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 Sincerely, 

Heather Gabel 

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:

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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.

 

#MasterLab Recap and Thanks

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

Brief Recap:

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

Sincere Thanks: 

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

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

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

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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!

mark-your-calendar

 

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