I’ve been meaning to address an issue that has been slow-cooking for at least a month, but I’ve been struggling with the right approach. In the weeks of observing the fact that high school never ends and the fact that open-mindedness is merely a superficial characteristic…quite frankly, I’ve had enough. Before I continue, I need to reiterate that I do not speak for my employer. This post, just as every other, is my own opinion – as a person with diabetes.
When we flew out to California to hang out with George and company, part of the hanging out itinerary was the JDRF Walk. The real joy of the event was getting to hang out with Sara, Scott, George, Lee Ann and a bunch of other people I’ve only talked with on Twitter and through blog comments. Technically I’ve had each of these fine people on my podcast before the event, but you get the idea. At the end of the day I only had two minor complaints about the event: 1. We passed multiple places labeled “Water Station” with no water station in site. When we are walking in the shade, that’s not the worst thing in the world but when there are no trees and the California Sun is glaring down on my (and Scott’s) bald head, water would have been nice. My other complaint is with the opening ceremony, to be specific the opening speech.
I don’t want to misquote or misrepresent anyone so I will be careful with this, but it was my interpretation that the main speaker before the walk began was representing the JDRF or at the very least the local office responsible for organizing the walk. I don’t remember his name (not important) or specific relation to JDRF (I’m sure his work email address was JDRF.org) but it he was on stage with a microphone so I figure he was at least a little important. The thing that stuck out with me during his remarks was the part where “the JDRF is the only organization dedicated to finding a cure for juvenile diabetes”. Excuse me?
Again, I’m speaking as a PWD. My employer has nothing to do with this.
First, it seemed rather taboo to say “type 1 diabetes” during the event. I suppose keeping things skewed for the kids makes everything better? Every time someone mentioned diabetes it was juvenile. Not type 1, not type 2, not gestational, no shoutout to the undiagnosed (of which there are many). I know the name of the organization is Juvenile Diabetes Research Foundation, but to not even acknowledge the fact that diabetes is bigger than the kids seemed a little narrow minded. I’m nit-picking, but I’m allowed to nit-pick on my own blog, right?
Second, the “only organization”? This is the kind of nonsense I had to deal with when I tell people where I work or that I’m raising money for Tour de Cure. “I only give to the JDRF.” I’m not trying to dismiss the people who have had bad experiences with either the American Diabetes Association or JDRF. First impressions are everything and if someone tries to put their time, energy and money with one group and gets burned it’s hard to regain their trust, I get that. My issue is with the great divide between the Diabetes Community (not just online folks) and the fact that this nonsense starts at the top, or close to it.
If the JDRF is pounding their chest claiming to be the only organization dedicated to finding a cure for (what I am not afraid to say is) type 1 diabetes, then it’s only natural that that talking point filter down to the masses. Of course that message is likely to get skewed, twisted and manipulated on the way down, but that’s likely the case when it comes to disseminating a message to millions of people. Unfortunately that’s the kind of BS I don’t need in my life. Just because Juvenile Diabetes is part of your organization’s name doesn’t mean you have exclusive rights to the research. I don’t want to see division at the highest level when my health is in the balance. I don’t necessarily need to see collaboration between the American Diabetes Association and JDRF (although that would be nice), but the petty name calling and finger pointing doesn’t exactly smell like professionalism in my opinion.
All of this points to a larger issue of the great divide that I see among the most vocal members of the diabetes community (again, not just an online thing). I understand that neither the American Diabetes Association nor the JDRF is perfect. There are things both organizations could do better. But the *ahem* juvenile approach I see when it comes to interacting with each other and these organizations leaves something to be desired. Finger pointing and baseless complaints do nothing to improve our situation. “Making history” should not be what people are focused on. If there are problems, work with the JDRF and American Diabetes Association to fix them. Shouting from the top of your soapbox doesn’t help much if you aren’t willing to listen yourselves and ultimately help. Constructive criticism is infinitely more valuable than subtle digs revealing where your priorities truly are.
I genuinely believe that with both the American Diabetes Association and JDRF, great things are possible. I don’t care who finds a cure first so long as a cure is found. These two organizations are our best bet at making the scientific and technological breakthroughs that we so desperately want and need but they need our help just as much as we need theirs. Working with these organizations to improve whatever it is you think needs to be improved is probably a better use of our collective time and energy instead throwing temper tantrums.
We’re better than that. Aren’t we?
[One last time. Opinions expressed are mine alone. Don’t get it twisted]