So, you say you want to be a bigger advocate… you want to be more involved. This is a little lengthy, but if you can, stay with me here.
You care, right? You care as much as the next guy. You’d like to get an opportunity to be at important events where the nuts and bolts of diabetes issues are discussed. You’d like to be in the room, and you want to be included in the discussion.
Great. No, really, I mean great… we need more advocates. We need more people in the room, and more people breaking down doors to the rooms we can’t get into yet. I’ve heard this a lot over the past six-plus years, and I’m always encouraged by the willingness of others to step forward and add their voice to the conversation.
Look, I haven’t been in the room a lot either, but I’ve been there enough to know that if you’re going to put yourself out there all the time, there are some things you need to be prepared for. Here are just a few:
A big change in priorities. You think diabetes messes with your schedule? Let’s add in conference calls with other advocates that are important for planning events and strategies. There are webinars, where information is presented that speaks to exactly what you’re interested in. You’re going to get a lot of e-mail that needs attention.
If you have a day job, look out, because most of these things are scheduled in the middle of the day in the middle of the week. If you do it long enough, you’ll find creative ways to work with your bosses so you can be part of these events but still get your work done. Usually in the evenings and on weekends.
Tonight, I’ll be reviewing diabetes statistics for my state again, so when our Advisory Council’s Diabetes committee meets next week, I’ll have a more thorough understanding of the landscape here in Maryland. You can’t just show up for these things… you have to be prepared.
Travel. You’re probably thinking… I love to travel! So do I. Now, let me give you an idea of what my last two advocacy trips looked like:
Get on a plane from home in the middle of the day. Easy enough. Get to my destination, check into the hotel. There are already things happening, even if the conference or summit or whatever hasn’t started yet. I hope you’re not tired from traveling, because there’s networking to do.
Then there’s the event itself. If someone (a company, an organization) is paying for travel and/or accommodations, they’re likely going to schedule something nearly every minute of the time you’re there. When I was in Las Vegas in March, I spent nearly four full days in conference space. Last month, I traveled to Chicago for the first time in thirty years, and I spent a grand total of about 25 minutes outside of the hotel I was staying in. That’s fairly typical.
And once the events were over, I was gone. In Vegas, the conference ended on Friday, and I was on a plane home at 6:00 on Saturday morning. In Chicago, the event ended at 12:30, I immediately boarded a bus to the airport, and after a full pat down at the security checkpoint, had to run so I could barely get to the gate in time to board my plane. I arrived home at 7:00 on Sunday evening, and I was back at work at 8:00 the next morning. Again, a fairly typical conference experience.
And you know what? I do love it! I wouldn’t have traded either of those experiences for anything. But that doesn’t keep me from feeling like I’ve been run over by a truck as I drag my ass into work on Monday morning.
And I haven’t even talked about the time I haven’t spent with my wife or family because I was away. Or the things left undone at home because I wasn’t there to do them.
Are you ready for that? Several times a year? I’ve taken nine days off from my job so far this year, and they’ve all been for various advocacy-related events. That’s not even counting the days I worked early or late so I could leave early another day to attend late afternoon meetings that lasted long enough to get me home around 8:00 that night.
Responsibility to the community. I don’t know how others feel about this, but from my point of view, if I’m going to be somewhere noteworthy, I feel a responsibility to the diabetes community. A responsibility to not only share what was discussed and the various parts of the gatherings I attend, but to share my feelings about what I was just a part of. Even if those feelings aren’t exactly wonderful. People who were not able to be a part of the discussion should know what was discussed, and have a chance to respond if they want to.
I also feel a responsibility to, where I can, try and help others attend these events. Not everyone needs to be at every conference. Not enough deserving people get to go. When people express a desire to go to a conference, a symposium, or a public workshop, I want to help them get there. So I let people know about applications to conferences, or about FDA workshops open to the public. There are truly more advocacy opportunities out there than you might think. To me, advocating means advocating for more than just myself.
Criticism. If you’re going to be somewhere where diabetes is discussed, and you’re there enough, you’re going to be criticized. Either because your stance isn’t what your critic’s stance is on an issue, or because they think you’re a shill for the company who sponsored your trip, or because they’re just bitter about diabetes for one reason or another. Feelings are real, and whether they’re right or wrong, they’re still feelings.
I’ve been lucky… I haven’t been raked over the coals in a public way like some friends have been after being at an event. But at some point, if your advocacy is big enough, you’re going to have to deal with someone who doesn’t see things your way. And you will have two choices: ignore it, or deal with it. Neither are pleasant.
Cost. Whether it’s a conference, a workshop, or even an ADA Tour de Cure ride, there have been many times where I’ve covered my own travel expenses for a weekend or longer. When I went to Las Vegas in March for #HIMSS18, I received a stipend from the Society for Participatory Medicine that covered my airfare and parking at the airport. Four days in the hotel and every single meal out there came out of my own pocket. When I go to Friends for Life Falls Church in October, I’ll be paying for gas and two days in a hotel out of my own pocket.
At least a couple of times every year, if I want to attend something I’m interested in, I have to pay my own way to be there. And that podcast I do? The equipment I use to record it costs money, as does the platform where it’s hosted online. Those Champion Athlete With Diabetes medals? I don’t get those for free.
Sometimes, you have to pay to play in the advocacy game. Again, I wouldn’t trade those costs for anything. But I realize that I’ve been exceptionally lucky to be able to afford them so far.
Look, I realize I may have scared a few of you off with what I just shared, but I hope I haven’t. Because we need all the advocates we can get. And my experience doesn’t necessarily have to be your experience. Your level of advocacy, how much time you commit, and how much money (if any) you spend are all within your control.
But those are just five things you have to be prepared for if you want to take your advocacy to the next level. With every meeting, every webinar, every conference, I really hope I’m adding something positive to our community. I can tell you that so far, the effort, the cost, and the results have all been worth it for me.
If they’re worth it for you too, then by all means, step up and let your voice be heard. Where I can, I will help you.
People often say that advocacy isn’t easy. I’m not sure this is exactly what they mean when they say it. But I know that I’m grateful for the advocates who are out there every day, not complaining.
Because I know some of what it means and what it costs to be out there advocating for better lives for all of us living with diabetes. So, to finish up, let me say…
To diabetes advocates everywhere: Thank you.