Words carry with them a lot of power, especially in their delivery. This week I spent several days at a diabetes conference, the T1D Exchange Annual Meeting; there were many people in attendance representing the diabetes industry, research, clinicians and patient advocates. Everyone came for their own reasons–mostly to see what we are working on as an organization and to get a sense of what lies just beyond the bleeding edge. My own reasons for getting up at 4:30 AM each day and putting on a suit (I do in fact own a suit!) may have been more simple initially; it’s a non-negotiable part of my job and the food (and coffee) was free, plentiful and of a really outstanding quality.
One of the things that made a huge impact on me was the fact that this meeting was not just a bunch of “industry suits” dictating what they want to sell the community; in fact it was a surprising marriage of honest perspectives that really shocked me. A patient panel began the whole event–and very “normal” people with diabetes spoke their truth; doubts, fears, challenges and yes, blatant skepticism. Sitting in the audience, hearing the struggles I’ve faced for years articulated while watching heads of the diabetes industry squirm in their seats as the people on stage pulled no punches admittedly made me a little uncomfortable. It made everyone uncomfortable. It was a level of frank communication that just hasn’t really happened elsewhere in diabetes as an actual exchange.
These things need to make more people uncomfortable–change can’t happen if you’re too busy patting yourself on the back and though it was only a start–it was brilliant.
The impact of the conversation was far beyond the cathartic, virtual “tar and feathering” of the pharmaceutical industry that happens in various segments of the tin foil hat communities in the dark corners of Facebook and Twitter. Not because the language was softer or the sentiment of the diabetes community was blunted, but because this conversation was an actual exchange, not just a faceless social media account screaming into the virtual wind like captain Ahab in the crows nest of the Pequod. Perhaps this surprised me because so often we see the meetings between the diabetes community, industry and research placed on eggshells. The awareness of who exactly is holding the pillow cases stamped with dollar signs all too frequently silences the voices that have the power to create change.
That would be your voice, and mine–diabetes advocacy as a whole.
There is a gargantuan disconnect between our voices and those who need to hear them. I saw the dim, but powerful flicker of hope as this gap narrowed for several days and real conversations happened. During one particularly poignant panel which featured heads of the insurance industry–basically discussing the calculations by which they decide who, what and how to pay out–my ire was sorely provoked. The reality of health insurance is that it is an industry which profits from the misfortunes of others–whose misfortunes would become catastrophic without their involvement, creating a catch 22 of the highest order. Hearing the term “non-compliant” thrown around like singles in a strip club–in reference to people with type1 diabetes–was like a slap in the face every…single…time.
Over and over.
Several leading Endocrinologists and leading medical experts took the microphone during the Q and A which followed this panel and dropped some truth on the panel about just how detached their perspective is–that they see the type1 diabetes community in terms of compliance when the reality is a systemic lack of care and resources.
“No person with diabetes gets up each day and says ‘to hell with my health, limbs and quality of life‘ yet to frame the entire conversation as though this is why we as part of the system have failed our patients is inexcusable. We are blaming the victims.”
Hearing medical experts repeatedly go to bat for us and admit the failure of the system was powerful. The majority of people with type 1 diabetes aren’t hitting the recommended A1C targets and it’s not for a lack of trying, they said. It’s proof that the message is getting through on some level and that we as people with diabetes are at the heart of it and if we are not yet, we must be.
The issue of civil disobedience arose in some of the panel discussions and it hit me that we as a community have stopped our evolution at advocacy which can be bought and sold. Advocacy is great in a working system but it’s powerless to change a broken one. Activism is the next level.
By the end of the annual meeting, I had more reason to show up beyond the food and the coffee. I was there to draw plans and inspiration; to stoke the fires that were fed with the dead-wood language of compliance. I know that this is just the beginning of something big. Something that hinges on action, not hashtags. I don’t know exactly what comes next, but I feel inspired to elevate the conversation about diabetes to a place where it can’t be ignored. This happens through a lot of different channels. Some of it is boots on the ground, some of it is virtual, some of it intellectual, research. None of it is about being compliant. We do not have a system that has earned my compliance.
I am non-compliant. My blood sugar is just fine, thank you, but I am looking beyond my diabetes and towards the future. Change can’t happen if no one shows up–you may think no one is listening–and that may be true at times but it’s no reason to pack up and go home. If you’re too jaded to even get involved–that’s about as compliant as you can get.
In the end it may be all for nothing. The system may get worse and all the nightmares about complications and costs may go unchecked for all of our efforts. Maybe no one will care or listen, so why bother? Thats a question we all have to answer for ourselves. For me the answer is that it is always better to try–and to try hard, like you mean it–and yes, it’s probably going to involve some climbing.
Special thanks to Stefanie Richert and Jeffrey Lash for the photos in this blog post. The obvious climbing portrait was shot just below the summit of Seneca Rocks in West Virgina as part of an “all type1 ascent”. Please support the work LivingVertical is doing by making a small monthly donation to the blog via paypal (right hand column on desktop or scroll down on mobile. 1 dollar a month from each of our readers would cover the costs of maintaining this website. You can also buy one of our diabetes empowerment photo prints!