Why I’m not signing the petition
I just got a heart-felt letter from Jamie Perez, one of two moms of kiddos with type 1 diabetes who are leading the fight to change the name of our disease. These two ladies are hardly the first to argue that the sister diseases of type 1 and type 2 diabetes are poorly named, but they are the first to successfully launch a grass-roots effort to try to actually do something about it. They’ve collected over 3,000 signatures on an online petition to the American Diabetes Association, the National Institutes of Health, and the International Diabetes Federation; and in the process have ignited a wildfire of passion and controversy.
This is not the type of situation I’m known for shying away from.
Their motivation, to quote from the petition, is that their sons are “subjected on a daily basis to ignorance and misconceptions.” They note, correctly, that the mainstream media frequently gets the two types of diabetes muddled. This dynamic duo believes that if the names of diabetes were revised to “more accurately reflect the nature of each disease,” it would “alleviate the confusion.” They think this would be to the advantage of type 1s and type 2s alike.
Jamie was writing to me to ask for my support in this effort. Oh, and not only did she write beautifully and passionately, but she made matters worse by telling me what a big fan she is of my writing—and as everyone knows, I’m a huge sucker for a compliment.
So it was with no small amount of guilt that I had to write her back, thank for her compliments, salute her for her passion, but to respectfully pass on joining her in this fight.
I’m not going to sign.
And I have four reasons why I’m not going to sign. Now, I’ve known about this petition for a bit, and even wrote about it in a roundabout way for Diabetes Mine. I did the background research into the last several times the names of diabetes were changed. And while our coverage, which Jamie felt placed her efforts “in a negative light,” has generated a ton of comments—more than 100 as I’m writing this—I have not read even one of these yet. Nor have I read any of the detailed posts written by my fellow diabetes advocates; both for and against the effort. I will. Eventually. But I thought I’d better commit my thoughts to paper first. I’m sure I’ll find myself tugged back and forth by the passion and wordsmithing of the opposing sides.
But think about what I just said.
Opposing sides? Since when? Since when should there be sides? Aren’t we all in this together? Apparently not. And that’s the first reason I’m not signing.
First: Look at what this is doing to us. We are fighting among ourselves. It’s a fucking diabetes civil war. We have bigger and more important battles to fight. We should be using our energy to combat public ignorance, legislative ignorance, and media ignorance—not fighting each other. Also consider, my brother and sister type 1s: So you feel bad when some idiot mistakes you for a type 2 and thinks you gave yourself diabetes by eating too much? Maybe you’d better do a knowledge check. Type 2s don’t “give themselves diabetes” any more than you did. How do you think they feel when exposed to the same cruel ignorance? You type 1s who want to ignore part of our family had better look into your hearts, or at least into a good medical textbook. The flavors of diabetes overlap, blend, and mesh much more than most people realize. Hell, if you really want to rename it, the only thing that makes sense is to drop the type 1 and type 2 and just call it Diabetes. Or maybe Fucking Diabetes. That would be more accurate. And much more fun.
Second: Changing the name would not cure pubic ignorance. Neither would it educate the mainstream media.
Third: It most likely can’t be done anyway. The petition is going to the wrong outfits. Who says the ADA, NIH, and IDF could change the names of diabetes if they wanted to? Diabetes is global. If you want to change the name, you really need to talk to the World Health Organization. And if you think our politics are bad, we are all bush-league compared to what you see there! And if the WHO did agree, beyond the three organizations petitioned, they’d also need to get the following on board: the JDRF, the two big groups of endos, the AACE and the ACE, not to mention the European Association for the Study of Diabetes, the Australian Diabetes Society, and the prestigious Japan Diabetes Society. And what about professional diabetes organizations in India, China, and elsewhere? Even if the three petitionees had the power to make all the other organizations toe the line, let’s not forget that they can’t even agree on a symbol for diabetes at large! Can you imagine the fights, egos, politics, and turf battles involved in choosing the new names? Getting all these organizations to agree on anything would require the same kind of miracle that it would take to get the US congress to pass a law!
Fourth, and most importantly: If, in the unlikely event this effort were successful, I fear it would have an unintended consequence for us type 1s, and for the two children whose experiences started this. Piggybacked onto the pandemic that is type 2 diabetes, we type 1s have some clout. If we get re-named, re-branded, re-invented, we just become another oddball rare disease. One unworthy of awareness, research, protection of law, or money. We’d risk becoming a fringe disease that only those who have been touched by it have ever heard of.
Globally, compared to other diseases, by ourselves, we type 1s just aren’t all that important. On the other hand, being in the shadow of an epidemic that casts a long shadow on the economies and societies of nations is to our benefit.