Tag Archives: advocacy

Define Diabetes Advocacy. Additional thoughts.

January 27, 2014 – 9:47 am

Following up on Sunday’s rare post concerning advocacy and what it can look like sometimes, I offer you this. You may believe that I have no business inserting myself into this conversation, and maybe for you, that’s true. If that’s the case, feel free to move on to another blog. If not, read on.

I’m really glad that advocacy has been discussed a lot lately around the Diabetes Online Community. It seems to have brought about a wealth of ideas and interest from people who have either become weary with their advocacy up to now, or have been looking for a jump start in their outreach to others. For me, all this talk has been like a mirror being held up to my diabetes life, forcing me to examine what I’m doing and if it’s really enough. At my age (51), I’m totally okay with that, and whatever the answers to those questions may be, and what those answers may be inspiring me to do in the future.

But I also understand the reticence of others in our community who cringe every time the word advocacy is uttered. I’ve seen it in Twitter feeds where people express their disappointment that they could never be the kind of advocate that others are. I’ve seen it in blog posts where people describe being uncomfortable in a room full of superstars. I’m not a psychologist or anything, but I think that may have something to do with the fact that we’re always comparing ourselves to others. Here in America, we’ve kind of cornered the market on that kind of behavior, measuring ourselves against what we think is the ideal (fill in the blank).

I’ve been thinking about this a lot lately, and I don’t know that I can assuage any fears you may have about reaching out to others, or starting a new initiative, or conversing with someone who appears unapproachable. But if I may, and especially since I’m older than most of the people reading this, let me share a few thoughts I have on the subject of diabetes advocacy. I hope you’ll see this as a pep talk. In no way is this criticism. You’ll notice I use the word advocacy (or advocate) a lot—23 times, in fact. I’ve done that on purpose. I hope using the word so much helps take some of the stigma away for you. Here goes…

First: We’ve all been there. We’ve all felt unworthy at times, less worthy at other times. I haven’t taken a poll, but I’m pretty sure there’s not a D-Hero (or D-Shero) you can name who hasn’t also felt that way at some point in their advocacy. From experience, I can tell you that this feeling will pass. And it may come back… and go away again. It’s okay to let it go. It’s more than okay to make it comfortable for someone else to let it go. Letting go of that feeling is less like jumping off of a mountain, and more like walking inside from the cold. The warmth feels good. Embrace it.

Second: You deserve to be part of the conversation. And part of the solution. If there’s ever a time when you don’t feel that way, go back and read that again. There’s no time limit on it. You always deserve to be part of the conversation, and part of the solution. It comes as part of your admission to this club we all belong to. Knowing that requires also knowing that you have some responsibility (another scary word) to hold up your end of the discussion in a positive way. Negativity will only bring you back to where you started. But don’t worry. I think you can handle it. If you don’t think you can, go back and read this paragraph again.

Third: Maybe you’re worried about walking into a roomful of amazing thought leader D-celebrities, or just a roomful of PWDs in general. I understand, and I don’t want to invalidate your feelings, because they’re real. But… can we work on this please? I do a lot of hero/shero worship myself. Hero worship is good sometimes. But worship someone because you think they’re worthy, not because you feel like you’re not. The few amazing thought leader D-celebrities I’ve met would probably tell you two things from the outset: They’re not comfortable with hero worship anyway, and you are totally worthy. If you’re helping others, or trying to help others, you are fifteen kinds of worthy. You: Worthy. Believe it.

And another thing: I guarantee that when it comes to advocacy, there’s someone out there, who is just getting their feet wet, or is in the same frame of mind you’re in, who wants to be just like you. If you can, help that person. If there’s someone having difficulty with their advocacy, or if they seem to be stalled, embrace them and their efforts. That’s a form of advocacy in and of itself.

Fourth: How to start? Start by asking people about themselves. This is the single best piece of advice I’ve ever gotten from The Great Spousal Unit. Just do it. Send an e-mail or a tweet and ask someone about their lives, or about their advocacy, or about how they bolus for pizza. I’m biased on this because I see one-on-one relationships as one of my strengths. But it really works. Ideas hatch from questions and answers. Now, you might think that one-on-one isn’t exactly advocacy at the highest level. But have you thought about the exponential impact of the one-on-one experience? It’s like the shampoo commercial from the 70s: You talk to one person, who tells two people, who tells two more, and before you know it, BAM! Advocacy happens. And it all starts with a single question.

Fifth: Not knowing everything is okay. Ideas often start out as one thing, and morph into something else. Don’t not start something because you haven’t got it all figured out yet. Oh, and it’s true that sometimes, one idea begets another idea which sometimes begets the mother of all ideas. If your idea evolves over time, it’s probably because one generation of an idea is better than its predecessor. That’s all right. In fact, it’s progress.

Sixth: Sadly, some efforts will fail, for a variety of reasons, none of which may be your fault. If you’re a true advocate, it won’t be your only effort. This almost goes without saying, but I’ll say it anyway: Failure of one aspect of your advocacy does not mean that you’re a failure. Failure of many aspects of your advocacy does not mean you’re a failure.

And guess what? Some efforts will succeed. When those successes happen, rejoice in them. Not because you did something. Because you helped someone. You helped lift someone up, helped enlighten them, helped them live a better life. Feel free to perform a little hero worship on yourself from time to time.

Seventh: Share ideas and information. Sharing your idea with others validates your idea, for one thing. For another, it helps to generate other ideas that may push your advocacy to another level. And if you have a tool that really works for you, share it. Everyone has a good idea or two. No one has all the good ideas. If how you do something helps someone else kick start their efforts, why not share? I believe that would be advocacy in two places at the same time. Pretty cool.

Eighth: I said this yesterday, and I’ll say it again today. Far more lives are at risk due to inaction. Far more lives are changed due to action. Even when it’s scary for you. Disclosure: It’s scary for me sometimes too.

Finally: Don’t… Stop… Thinking about tomorrow. Recognize that where you are today isn’t (or doesn’t have to be) where you are tomorrow. The past is the past. Only a reference point. Understand that just like diabetes, good or bad, every day is not the same, and will most likely be different. Know, for what it’s worth, I support you… no conditions. Know that many others feel exactly the same way.

You are so completely worthy. And capable. Advocacy comes in all forms. Bravery does too. And your advocacy, big or small, in whatever form it takes, will change lives. Don’t ever be afraid to make a positive impact on someone’s life. I think you’ll find that your life-changing diabetes advocacy will change your life too. That’s not something to be afraid of. That’s something to get excited about.
 
 
 

By StephenS | Posted in Advocacy | Also tagged | Comments (5)

Define Diabetes Advocacy. There’s more than meets the eye.

January 26, 2014 – 3:00 pm

After some careful consideration, I feel compelled to weigh in on the idea of advocacy. You may believe that I have no business inserting myself into this conversation, and maybe for you, that’s true. If that’s the case, feel free to move on to another blog. If not, read on.

I don’t usually post something on Sunday. I hadn’t planned to post anything today. Then when I opened up Saturday’s New York Times, I saw a photo that, to me, is a perfect example of what advocacy looks like. For copyright reasons, I can’t show you the photo here. But before you continue, please click over to this New York Times story to see what I’m talking about:
http://www.nytimes.com/2014/01/25/world/europe/ukraine-protests.html?_r=0

Four Orthodox priests. Standing, praying, between protesters and police. It really says a lot to me about what advocacy looks like.

There they were, standing between the two sides. You’ll notice they were standing with their backs to riot police, facing the protesters. Did they turn later and face the riot police too? We don’t know. Did they support one side more than another? We don’t know. I like to think their concern was for everyone involved in the conflict Friday night in Kiev.

But whatever their political leanings (if any), the fact was they were advocating for better outcomes.

Do you think they knew the impact of what they were doing? Do you think they knew exactly how to do what they were doing before they did it? Do you think they knew what the outcome would eventually be?

The truth is, violence returned sometime after that photo was taken, and rubber bullets were fired at protesters, who threw rocks at police and firebombed buildings.

But how many people walked away from the conflict after seeing the advocacy of these four individuals? How many people, on both sides, who saw their display of peace and hope will tell their children about it and encourage them to find better solutions to their problems in the future? That’s an impact that could be decades away from happening. Yet the seeds were planted Friday night. The exponential benefits of their advocacy may not be fully realized for generations. Yet they felt that now was the proper time to make a statement, take a stand.

Do you think these four Orthodox priests were afraid? Of course they were afraid. But they also understood that far more lives are at risk due to inaction. And far more lives are changed for the better due to action.

There were four of them there in the square in Kiev. There wasn’t one priest in four separate locations. Sometimes numbers make a difference, and sometimes it’s okay, even good, to latch ourselves onto someone else’s idea and help their advocacy succeed. Because by helping them succeed, we all succeed. Try it sometime. You’ll find out I’m right about that.

Do you think they were concerned that they weren’t important enough to take on such a task? I think they were only concerned about the task. They probably didn’t know exactly how they were going to do what they did, but they pushed ahead anyway. They didn’t have it all figured out. But they knew what they could do, and they did it.

Very few people begin advocacy efforts, or join existing advocacy initiatives, knowing everything about what they will do or how it will impact others. Or even if their efforts will result in anything measurable.

But they know there is a need. They have the empathy to identify with it, and the resilience to do what they can, even if they don’t know everything about where their inspiration will take them, or even if it will succeed. But even the smallest gesture, in places seemingly unknown, can have a lasting, profound impact on all of us.

With that, I will leave you with this musical interlude from Sara Bareilles. And this admonition: Show me how big your Brave is.


 
 
 

By StephenS | Posted in Advocacy | Also tagged | Comments (2)

Taking control of your diabetes message.

December 26, 2013 – 9:45 am

Hi! I hope everyone had a wonderful December 25th, however you celebrate it, or even if you don’t. For the record, my Christmas was very nice, with a quiet gift opening in the morning, followed by a completely bolus-worthy breakfast (I only get bacon a few times every year, and Christmas is one of those times). In the afternoon, we all went to my nephew’s home and did some more gift exchanging, hung out with him, his wife, and my great niece (who is also a great niece), and enjoyed an early dinner. All in all, it was a super day that left me feeling very blessed. Which, if you know the cynical side of me, sounds absolutely strange. I guess there still is some magic left in Christmas.

I’m very fortunate in that I don’t have to deal with lots of friends and relatives at this time of year who begin with the “Can you eat that?”, work their way through the “If you eat better and exercise more, maybe you can get off the insulin”, and finish with the “My co-worker has a sister who lost her toes a couple of years back”. I think there are a few reasons why.

First, my friends and family make an effort to actually know something more than the basic jargon that gets regurgitated by talking heads on TV. They don’t know about insulin-to-carb ratios or how fat in your diet holds back the effectiveness of the insulin you’ve got on board. But they know that exercise can drive your BGs down in a hurry. They know that insulin actually brings your glucose down, not up. They understand that too much insulin is bad, and not enough insulin is bad, and getting to that Goldilocks state (just right!) means that there’s some math involved, and the perfect BG is a moving target, so it’s not a walk in the park.

Second… to put it into two words… They Listen. They may or may not ask how I’m doing, but if the subject comes up and I talk about diabetes, they honestly listen to what I have to say about it. And they retain some of that information, because they often ask me about it the next time they see or hear from me. I don’t know when this started happening, but I’m glad it’s happened. I’m not saying that everyone should listen intently to everything I say on the subject, but it’s nice to know that I get at least as much attention as the talking head on TV.

Finally, and I can’t stress this enough: I take control of my diabetes message. You wouldn’t think of me that way if you’ve ever met me. If we meet and I don’t know you, I’ll try to remain unassuming and in the background a bit until you’re comfortable with me. But if we’re talking about diabetes, and especially if you’re challenging me on my diabetes, I guarantee you I’ll be doing everything I can to direct the conversation in a way that’s informative, and mostly positive. I’m not going to let someone with antiquated notions of this chronic condition or with incorrect information control the conversation. I’m going to try to explain what Diabetes 2014 looks like (it’s almost 2014—right?), and I’m going to try to put it into terms that the non-diabetic can understand, and take with them to the next conversation about diabetes that comes up in their lives. I am doing this in a deliberate, conscious way.

Why do I do this? Why do I make this effort? Is it because I’m a crazy, rabid diabetes advocate? Well, I try to be a diabetes advocate whenever I can (reference the Diabetes Advocates button on your left—I’m a member), but that’s not quite the idea here. The thing is, I’ve had those moments with friends or at work, where people just say things that don’t make any diabetes sense, and I’ve let it roll off my back without saying a word. I don’t do that anymore because keeping it to myself doesn’t feel nearly as good as opening up a window and letting in the fresh air of truth. In some cases, people may just let my words roll off their back and forget about everything I say. But at least I’ve let them know that my diabetes is my diabetes, and it’s different from what they’ve heard in the past, and I’m not Aunt Clara and yes, I’d love a small slice of that pumpkin pie, thank you.

So my advice, if you’re asking:

– You are living and surviving with diabetes, or your son/daughter/spouse/etc. is. You never have to apologize or be defensive, or be silent about that.

– Stay informed. Talking well about your diabetes means knowing as much about your diabetes as you can. It also makes it easier to answer questions when you get them (I love questions! It means the other person in the conversation is engaged).

– Never miss an opportunity to set the record straight. The more we let truth in, the less room there is for myth.

– If possible, try to put things in terms that someone not living with diabetes can understand. Work on your message like it’s a sound bite, or an elevator speech. You know, like you’re riding an elevator with someone important, and you only have 20 seconds to deliver your message before they arrive at their floor.

– Remember how networks are created: In this case, one person at a time. Remember that your message to one person may be rebroadcast to many others. Do you want them to rebroadcast your message, or their version of diabetes? How would each of those outcomes make you feel?

Good luck with crafting and delivering your very important, amazing message to the world.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (1)

Happy December.

December 4, 2013 – 7:42 am

Wow, I can’t believe it… it’s been almost a week since I published anything. Don’t read anything into that other than the fact that work has been occupying nearly all of my time, and I just haven’t had any extra moments to write.

But while I have a moment, let me just ask you to remember what’s really great about the holiday season that’s just begun.

What’s really fantastic about this time of year is the giving. And the giving takes all forms. From blog giveaways here and here, to giving and preserving life by donating to Insulin for Life, which has a big push right now to raise funds to aid typhoon victims in the Philippines.

There’s also a DiaTribe petition (go there—read & sign NOW), to urge the ridiculous people in Oregon’s Health Evidence Review Commission (this is a thing?) to stop the idea of restricting test strips for Type 2s to one, or even zero, per week to the patients enrolled in the Medicaid-funded Oregon Health Plan. Go there. Read it. Sign it. Now.

And strangely enough (or it makes perfect sense, depending on your point of view), right about now is also when a lot of people feel a little more down. Feeling a little less celebratory, and a little more like hunkering down through the holidays. For those people, I hope the rest of us can bring ourselves to reach out this December. Not to say, “Hey, you should be part of this great thing happening!”, as much as to say, “Hey, I feel for you, and I was there once, and I support you, no matter what… No Conditions”.

It is not a reach at all to say that sometimes, the best giving is when we give of ourselves. I know that from experience, and I know that from experience on both sides of that table. Empathy means a whole lot in our world. And giving empathy feels really great too.

Hope you’re enjoying your week… I’ll try to catch up to you with more very soon.
 
 
 

By StephenS | Posted in Advocacy, Support | Also tagged , | Comments (2)

The people we look up to.

October 28, 2013 – 1:18 pm

It was three weeks ago that Tom Hanks revealed he’s living with Type 2 diabetes.

Tom Hanks is maybe my favorite living actor. Everything I’ve ever seen him in… He plays all of his roles so well that I have no trouble believing him as the character he portrays on stage and screen. I’ve got to think that’s exactly what an actor is going for when they play a part. If there was a movie star I’d really like to meet (other than maybe Sandra Bullock– for obvious reasons), it would probably be Tom Hanks. So the news of his diagnosis really hit me. And since then, I’ve been trying to find something profound to say about it.

Then, last Monday, Karmel Allison, who writes over at asweetlife.org, has lived with Type 1 diabetes since age 9, and is now 21 weeks pregnant, nearly passed out while standing behind the President of the United States. She was there because she wrote a fantastic post about how she views the Patient Protection and Affordable Care Act (AKA Obamacare) as a Person With Diabetes. The President’s speech was about his signature piece of legislation. I haven’t seen anything from her that specifically says it was hypoglycemia, but in the video it sure looks like hypoglycemia to me. Anyway, that part really doesn’t matter… does it?

At any rate, I was on the road from Charlottesville to Baltimore when all this happened, so I didn’t even find out about it until the next day. And yes, I read the comments after many of the stories about the event posted on the web.

I was shocked. I was horrified at the mean, awful, hateful things written. Democrat or Republican, Liberal or Conservative, you have to admit that the vitriol spewed in her direction was ridiculously mean. Other than what I saw posted from the Diabetes Online Community, I did not see one positive, one semi-empathetic comment. Not one.

Meanwhile, Karmel has kept from writing awful, vindictive things in response to these hate filled attacks on her and our President. Her Twitter account has been almost silent since the event. Even though she has a right to be angry and lash out at people who hate her only because of her proximity to the leader of the free world during a speech in the rose garden, she appears to have taken the high road.

What does this have to do with Tom Hanks’ diagnosis from two weeks earlier? And what do these two events tell me? Just this:

Our heroes can and do develop diabetes.

Our heroes can be and are affected by diabetes.

Our heroes remain strong and retain our respect despite diabetes.

These words apply to everyone out there telling their story through laughter, advocacy, sadness, athleticism, schools, careers, successes, and failures too. Tell your story honestly, with empathy for all and resilience against all odds, and I will always look up to you.

And no amount of hate can take that away.
 
 
 

By StephenS | Posted in Additional Inspiration, Diabetes | Also tagged , | Comments (2)