In the end, I decided to publish this post. You have every right to complain about it to me, but please leave my friends alone.
So, it’s been an exciting first week of Diabetes Awareness Month. I’m noticing, and I suspect you’re noticing too, that a lot of people in our online community are either burned out on advocacy, feeling insignificant, or getting digitally slapped around by the passion of someone’s feelings on things as innocuous as a gravatar. Yep I’m going there just this once.
I’ve been watching posts this week, mostly on Facebook, and for me (you must make the decision on what’s right for you), I think it might help to put some things in perspective. Here are a few things I’ve found out about diabetes advocacy, the Diabetes Online Community, and how we treat each other:
First: there are not nearly enough of us.
For all of the wonderful things that have been accomplished in terms of awareness and education about life with diabetes, the fact is that there are a lot of things left undone. Like anything else, there is more than one reason for that. But I think one of the things that gets overlooked is the fact that we cannot do everything by ourselves, and the number of people practicing diabetes advocacy on a regular basis is extremely small. So why would you want to criticize those people for not doing enough, or for being at the forefront of a movement, or for just showing up on Twitter and on podcasts more often than someone else? If those people advocating all the time stopped advocating all the time, who would take their place? Anyone want to step forward? Full Time? Every Day? We should thank our lucky stars that we have someone, anyone advocating for us anytime. Can we thank someone for their advocacy today?
Diabetes Awareness Month is during November. Diabetes, and diabetes advocacy, is year round.
This is what I try to remember when I think about Diabetes Awareness Month and how much I haven’t done so far this November. I know I will try to advocate as best I can, but I try to do that anyway. And if I have a super idea that pops into my head on December 18, am I supposed to sit on it for eleven months so I can reveal it during Diabetes Awareness Month? I don’t think so. I started podcasting in August… I didn’t wait until November just so I could tie a blue circle around the idea.
When I think about diabetes advocacy burnout this time of year, I often wonder if it comes as a result of people doing their best all year and once November rolls around, there’s not much left to give. If that’s the case, I think it’s all right to say “Sorry… all of my great ideas are gone for the year. I’ll get back to you when I come up with something else”. That means less emphasis on November, but let’s face it… we’re not getting a lot of notice this time of year anyway. Other than December and October (for obvious reasons), I don’t know if I could have picked a worse month for Diabetes Awareness Month than November.
Advocacy comes in many shapes and forms. And we forget that.
We do… we forget what we ourselves do that is absolutely diabetes advocacy in action. I’m going to list a few things I’ve done in the last two years that, in my mind, qualify as diabetes advocacy. I’m including the last two years because this year has been pretty sparse, unfortunately. Here’s the list:
– Rode in ADA’s Chesapeake Bay Tour de Cure, raising money for a worthwhile organization
– Promoted various advocacy initiatives started by others, like BigBlueTest and Spare A Rose/Save a Child
– Attended the first Diabetes Advocates MasterLab in Florida a year ago (thanks Diabetes Hands Foundation, who paid my travel and hotel)
– Gave away medals to People With Diabetes who achieve their athletic goals
– Donated blood three times (in the USA, you can live with diabetes and donate)
– Attended an FDA public workshop and spoke during public comments portion
– Participated in a clinical trial
– Told my story here, on other web sites, and in interviews
– Started podcasting, interviewing diabetes newsmakers
– Participated in the weekly DSMA Twitter Chat (and moderated a few times too)
– Lived my life with diabetes to the best of my ability for two years
I’m going to guess that your list of advocacy is similar, if not better. Now, that’s not a huge list, and it’s not major in terms of diabetes advocacy. But it’s not nothing either. Like my diabetes, I’m doing the best I can with the time I have and the resources I have. If I need to remind myself of these things, I will because it’s proof that my presence means something. I hope I don’t forget that. More importantly, I hope you don’t forget that either.
If you let it, conflict will take the place of advocacy. And sometimes, people are just too damned sensitive.
Don’t get me wrong: If I’ve done something you’re not happy with, and you want to say something about it, then okay. News flash: Sometimes I’m wrong! It happens. I’ve been lucky in that when it happened, I had people show their displeasure with me in a way that is respectful and caring. It’s still uncomfortable to hear you’re not perfect, but if I want to expect people to be respectful, I must be respectful too.
However… when you focus your energy on one little thing, and you want to translate your feelings over that one thing toward me as a person and decide I suck because of a fucking gravatar… I’m not sure I have any words for that. Except fucking gravatar. Here’s what I mean:
When we take on someone for something they’ve done, or not done, said or not said, posted or not posted, real or imagined– that act, that emotion, is taking the place (and time and resources) of actual advocacy. Time that could be spent contacting our elected officials on important issues, telling our story so others will better know and understand our disease, or helping someone come to grips with their new diagnosis gets cast aside in favor of Being Right. The truth is, Being Right is completely subjective in many cases. And often, there is more than one definition of Being Right. Regardless… individually, we are almost always not the Official Arbiter of Being Right. It would be kind of cool if I was though. Still… in this case, it’s a gravatar, not an insult.
In addition, when you’re engaging in conflict, you’re running the risk of making people feel like they should just walk away from advocacy altogether. In my mind, having one less diabetes advocate is not fair compensation for Being Right. I don’t know about you, but I need every advocate I can get.
This month, I’m not engaging in the T1D Looks Like Me campaign. But I support people who do. I’m not using the #TypeNone hashtag either. But I think it’s a fabulous idea. I live with Type 1 diabetes, and I have many friends who live with other types that are fantastic advocates. I want to continue working to understand them and support them as best I can, while also helping and supporting my T1D friends. I do not run an exclusive club. I don’t believe my Type 1 friends do either.
This November, I’m going to keep on with my life, engage in my own form of advocacy, while supporting as many causes and people as I can along the way. For me, it’s a heck of a lot easier than worrying about Being Right all the time.