Advocacy and Me

As I become more and more involved with the DOC, I see alot of folks performing some great advocacy work in regards to fundraising.   And as time goes on, I get more and more items of “writing letters for funding” or “contributing for the cure”.  And while those are important things, I feel it’s a little like preaching to the choir. 

For me tho, I honestly have no interest in fundraising.  I couldn’t sell a glass of water to a thirsty man in the desert without throwing in free ice and a ride to the nearest oasis.  

I can contribute my time, but I already spend several hours a week as an admin on TuDiabetes plus trying to keep up with the various D-Blogs I’ve come to like.  And then when I throw in the thought of all the effort I expend on D-things in any given day… I’m sorry, but my d-docket is pretty full.

In general, I rarely contribute to fund-raisers because I can’t contribute to all of them, and feel guilty when I don’t contribute to one cause or another.  I’m at the point where I don’t even want to get the emails any more, which is why I unsubscribed from all the ADA emails a few days ago.  

Every email I was getting from the ADA was “wanting” something.  Here I am, a diabetic in Kansas City, who rarely hears of anything local involving the ADA, or the JDRF for that matter, being asked to give even more than D already drains from my very essence every day.

At least the JDRF has finally acknowledged that adults with T1 need programs as well.  Thier recent Toolkit had a lot of great info.  But it was still directed primarily at the newly diagnosed.  Those of us that have been doing this for decades have different needs.  I feel as if we are still somewhat left out. 

We need to just be able to get together, whether we even talk about diabetes or not.  It is so comforting to know that you are in the presence of people who are not going to judge you, not going to lecture you.  Folks you can honestly make an instant connection with because you have something in common that is so in-grained, so intrinsic to you all.

Sites like TuDiabetes and twitter make this so much easier.  You can find others so much more easily than you could even 5 years ago.  Now this is where I gave the JDRF Toolkit a failing grade.  It mentioned thier own site, Juvenation, but didn’t mention that any other sites even existed, let alone name any.   

The latest newsletter from the KC JDRF Chapter has an article titled Let’s Meet: Calling All Kansas City Adults With Type 1 but nowhere in the article does it tell you how to actually join up.  Or when and where such a meetup might be?  I mean come on, you offer exactly what is needed and have no infrastructure in place to actually do it?  Makes the adult outreach seem pretty hollow to me.

Maybe I’m just jaded, feeling angry about thinking I was alone in all this for so many years.  Honestly, tho, I just feel that I personally have little use for the national organizations.  They seem willing to use me for funding but offer so little in return that can improve my life on a daily basis.  And I dearly hope that a cure can be found so noone else has to go thru this.  Even if it was some type of “vaccine” and wouldn’t cure me, I’d be pleased as punch if it would prevent anyone else from ever having to live with this.

For me, advocacy has to be about directly working with, talking to, listening to, and learning from the people that I can maybe help in some small way.

Today’s snarky comment: Scott, quitcherbitchin, k? thx