Thursday, July 12, 2012

FFL: Making the Outliers, Inliers

(if I were a dot on this graph, I'd have been to the farrrr right)

In 2005, I boarded a plane bound for Florida...bound for this place I'd heard about, called Friends for Life. To say that I was nervous would be the understatement of the year. (I was going to room with someone I'd barely met from the Internet chatroom) I didn't know a soul. (and I also didn't tell my parents where I was going, lest they unduly freak out. Wise, nu?)

When I got there, there was no red carpet, no welcoming committee. The CWD young adults of today were still teens, doing teen stuff..and I was at the wayyyy far end of that bell curve, struggling to see where I could fit into all this. Yes, I could pretend to be a teenager(I still looked like one) but in the end, I (& my friend) were out in the cold.

(and that is how I found myself volunteering to chaperone a bunch of crazy midnight. Never again, is all I can say.Although I respect each and everyone who does so, that's not my cup of tea.)

Seven years later, I don't feel alone (above and beyond the baby/husband in tow factor) anymore when I go to that conference-there are friends everywhere. And that (semi-crazy) fellow PWD that I met off the internet is now a very good friend, not the ax-murderess one would assume they would be. I've grown as a person (one who wouldn't say two words at that first conference,I've always been somewhat of an introvert) and a PWD(knowledge base= double arrows up). And the friends I've met haven't been limited to fellow PWD...spouses of PWD, siblings of PWD, exhibiters, as well as parents of CWD.(it takes a village, and all that jazz)

Many more "outliers" are coming to FFL now..and those teenagers are growing up, getting married,etc. The bell curve is shifting and its not such an odd thing anymore to go to a "Children with Diabetes" conference.

But it still is a "Children with Diabetes" conference, and while more adult programming is making its way into it, at its core, it seems like that will never change. Too earth-shattering to change to "Children and Adults with Diabetes." Not to mention it probably won't sit well with Johnson and Johnson.It started out CWD, and will likely remain so. And for some adults,that's likely to be a point of major contention.

So where is this all going? I don't know. But I can't help feeling that somewhere down the proverbial pike, CWD is going to be faced with that decision (to change the name) because so many adults with D will be coming to this conference..and the fallout may not be pretty. I personally don't care about the name, I love it regardless (people don't ostrocize you just because you don't have a CWD) but it does infer a certain stand-offish status to those who don't have a CWD. CWD is going to have to adapt to this and the shift in the bell curve, perhaps very soon/very quickly (depending on how many T1's do decide to come,and judging from what I read on FB/Twitter there's alot of interest out there). The adult programming is coming along pretty well,they've had some great sessions this year. Scholarships for (adult) PWD also need to be established.

I think that there's room under this big o'le umbrella for us all...CWD or not. (we all need somewhere to feel normal/loved/accepted)


Sara said...

I know they are working on it but I have never been known for my patience! :D

Scott K. Johnson said...

Room under the umbrella indeed!

Karen said...

Such great observations. I don't mind the CWD name, and I try to remember it will take a while for presenters to remember a lot of adults are in the audience now. I feel the same way with JDRF, the inclusion of adults is a little slow to really take shape. But it's exciting to see it evolving.