Skip to main content

Grass Roots Advocacy

Follow along this week as I participate in Diabetes Blog Week!! Today's post topic is about "Changing the World" through advocacy. 

_________________________________________________________________________

I'm so thankful for the JDRF moms and dads who put together walks, I'm thankful for the Type 1 Diabetes mentors who collaborate and organize support groups, and I'm thankful for the online advocates who send out notices to write a congressman or sign a petition. But the truth is, I am none of those people. Don't get me wrong, I am often involved in the get-togethers or signatures they organize, but I do not formally advocate for this disease. 

I think of myself as more of a grass roots Type 1. No one has the bandwidth to support every dang cause or fight every dang disease on this planet. "Type 1 Diabetes" is a phrase more than easy to tune out if you have no connection to it. And thus the essence of my advocacy efforts: make connections from shared interests, and hold back the Diabetes card until the person really knows YOU. 

In 15 years of being a Type 1 Diabetic I am still surprised at the reactions when I tell someone that I have Diabetes. 

"But you're so young."
"You're not overweight."
"My grandpa had both of his legs amputated because of Diabetes."
"One of parents friends went blind because of Diabetes."
"Can you eat that?!"
"How often do you test your blood sugar? Once a day or something?"
"You are the reason my insurance rates are so high."
"Who did you get it from? Your mom or your dad?"
"That sucks."

But this post isn't about dwelling on sometimes offensive reactions, it's about changing those incorrect assumptions one connection at a time. Grass roots advocacy puts a personal face to an impersonal disease. It's advocacy through action - pushing boundaries and never using Diabetes as a crutch. It's about being a good representative for an entire community, and equipping new friends with the tools of understanding and compassion, instead of confusion and bitterness. 

Every Diabetic is a grass roots advocacy specialist - we all know how to explain our busted pancreases, our plethora of blood related electronics, our glucose tabs and food logs, our concerns with stories about amputated legs and blind eyes. The trick is keeping an open mind and kindly sharing this knowledge with new connections; hopefully they will remember how normal you are in every other way and how Diabetes doesn't discriminate the next time you need a JDRF walk donation ;-)

Comments

  1. Thank you for speaking up for yourself and others, April. We all benefit from it!

    ReplyDelete
  2. AND.. "You don't look diabetic." Huh??
    Someone really mentioned their insurance rates? How rude!

    ReplyDelete
  3. Thank you for emphasizing the importance of grass roots. It's the most important part of it all. The human contact is the most fulfilling part of it all.

    ReplyDelete
  4. I have a friend who I do not see very often, but if there's ever time for a long-ish conversation (say, at a dinner party), she takes tells me of her father's "diabetic coma." Ay yi yi! Then she tells me she is not sure if he has Type 1 or Type 2.

    It could be a drinking game.

    ReplyDelete
  5. You're absolutely right about personal connections giving diseases more weight. I try to be that personal connection for anyone who will listen to me talk about it!

    ReplyDelete
  6. I can't believe someone would say that about insurance. How crazily ignorant.

    ReplyDelete

Post a Comment

Who has two thumbs and loves comments? Nerdy April!!! Type one out and hit publish!

Popular posts from this blog

The road to curing Type 1 Diabetes

From the moment of diagnosis, the road is rough, the learning curve is steep and the stakes are literally life or death. The map is less-than-helpful - paths originating from virtually every corner, coalescing at a center point (aka "diagnosis") and bursting back outwards - some paths cross and wrap around each other but others are isolated. And even with all of these roads, most of the territory is uncharted - how did we all get here and how will we all exit? Where are the obstacles we haven't found yet? Which passage holds the key to unlocking the solution?

On any given day I feel pretty isolated with this disease - I'm the only T1D in my group at work, the only one in mission control, the only one in my family. I go through the logistics of calling insurance companies, ordering supplies, changing sites and troubleshooting malfunctions mostly on my own. Even those pesky carbs really only get counted in my brain, no group think for a meal bolus here. But there is b…

Critical Space Item: Handle With Extreme Care

Someday I want to open a box. The box will be neatly wrapped up with an excessive amount of packaging. Its contents will have been years in the making, and even though it won't weigh much, this small box will represent a huge step forward.


As most flight hardware begins, the space-rated closed-loop insulin delivery and monitoring device inside the box will be sterile and stark. But as the batteries whir to life and insulin is placed within, it will become an extra appendage, an external pancreas, for this Type 1 astro-hopeful. Bluetooth connections will be made and doctors, hungry for telemetry from my bionic body, will be at the ready. We will rely on each other - he on I for his very existence, and I on him for my continued existence. Together we will make up one whole, completely functioning, Type 1 Diabetic astronaut.

Admittedly, this dream feels further and further from reality. I have lived with this disease just under 20 years now, and the cure has always been "just 5 …

On 20 years with Type 1 Diabetes

I think it's finally time to hit 'publish' on this post, considering it's been sitting here for, oh you know, like 2 weeks now ;-) Sometimes I "April" about things too much (this is Chris's term), and with my dad here for Christmas I realized that it's definitely a trait passed down, haha, love you dad!


To be honest, I never thought the day would come when I would say, "I've had Type 1 Diabetes for 20 years."

20 years ago a cure was 'just on the horizon' and as an 11 year old kid I took that phrase to heart - I had to. My continued existence was based solely on whatever the endocrinologist said - pancreas, insulin, autoimmune, blood sugar, islet cells, shots. I didn't know what I didn't know at that point. I had never heard of an insulin pump or glucose meter. Ketones and hyperglycemia were just big, meaningless words. Carb ratios and counting might as well have been formulas for travelling at light speed. I wasn't ov…
01 09 10