LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Monday, June 18, 2012

A Founder’s Lament


I don’t like the flavor of the conversation anymore. And I haven’t for a while. It tastes more bitter than sweet. I see battle lines being drawn between fighters who’re on the same side. I fear civil war that we can ill-afford.

I’m talking about the growing divide between those of us branded as “leading bloggers” and the rest of the Diabetes Online Community (DOC). A divide between those few of us who always seem to be in the headlines, and at conferences; and the many, many more who don’t get the same opportunities.

Let me be clear: I don’t personally view myself as a leading blogger at all. I just see myself as one of the Founders of the DOC. And I’m not a Founder because I’m a brilliant fucking visionary, but simply because I was at the right place at the right time in the flow of history. Nothing more.

But as time has passed, this accidental status has taken on some power. By being a Founder, I find that people look to me for leadership, and that my opinions and actions carry some degree of weight.

And it’s my opinion now that we must not create “cliques.” Or even the appearance of cliques. We must not allow any part of our movement to become some sort of elite; or be viewed that way from either within or from without. I hear bitter rumblings…it’s always the same few bloggers at these DOC events. Division is poison. The DOC is huge, and we Founders cannot and must not speak for our population forever.

I propose that we need term limits. I’ve served three terms at Roche Social Media Summits. I think that’s enough. It’s time for me to step aside and let other voices be heard. As a Founder, I think it’s my responsibility to set an example with my actions. So I’m giving up my seat. I have un-RSVP’d to Roche, and have asked them to please extend my invitation to someone else.

I suggested a blogger I really don’t know very well, and have never met before. A person who is very much not me, but who is an awesome writer with a passion for helping others. Someone who I think is deserving of a seat at the table as much, or perhaps even more, than I am.

This was no easy thing for me to do. Stepping aside means missing out on fun, fame, and family. It means a high risk of diluting what influence I have, and have worked hard to earn. It’s perhaps taking away my own microphone when I’m facing the largest crowd I’ve ever spoken to. It might even be career-a-cide for me as an advocate with any influence.

But, it is right thing to do.

I can’t say if any other the other Founders will join me. I hope so. But by giving up my seat, at least one fresh voice will added to the “high profile” chorus. Hopefully that turns down the volume of the dissent among the noisy jealous that see the Founders of the DOC as spoiled ambassadors who are only out for ourselves rather than speaking for the community.

And…. incredibly selfishly… I hope my choice doesn’t move my voice into the shadows. The outfield. The back-forty; where it becomes heard no more.

But for the right thing—for the greater good of the DOC—that’s a risk I decided to take.

20 Comments:

Blogger Araby62 (a.k.a. Kathy) said...

Thank you Wil.

8:36 AM  
Blogger Scott E said...

Wil, I really respect and admire you for doing this. I've definitely seen some animosity towards the "leading bloggers" in comment threads at times. I feel like the well-intentioned MySentry giveaway may have further fueled this. Of course, I don't believe they (the leading bloggers, or Med-T for that matter) deserve to be the targets of animosity; I think in many cases they are leaders because of their style, content, and consistency, and as such deserve to be recognized.

When I started my blog, I admit that I aspired to be like Kerri at SixUntilMe. But I quickly found that I don't have the captivating writing style, the charisma, the confidence, or the time to commit to it (or the good looks or loveable daughter, for what it's worth) that she does, so I have no problem with bloggers such as her keeping that "lead" status. She, and others have earned it through more than just longevity. They've earned it through talent and commitment.

So I wouldn't be in favor of such "term limits". Besides, the corporations who invite bloggers to their functions have no reason NOT to invite those with the most visiblity and most largest audiences. However, what you're doing is certainly a friendly gesture, and I'm sure if Roche extends your invitation to whomever you've recommended, they'll be grateful.

8:45 AM  
Anonymous Pearlsa said...

Much respect and admiration Wil! You are a true "leader"

"The function of leadership is to produce more leaders, not more followers."

10:09 AM  
Anonymous Anonymous said...

Like Scott E, and Pearlsa comments. ( where is the like button?) I have often thought this in other arenas as well.
Kelly

11:04 AM  
Blogger Penny said...

Wil, Thank you for saying this. I've wanted to say something along these lines for about 6-8 months now. I fear the clique, I really do. I don't want this divided into tiers of DOC bloggers or members. If you have D or care for someone with D and you are online, you are in, in my book. And there is no ranking.

I am so proud of you for taking your stand. This DOC, all of our DOC, needs to speak for all of us, and not just have 'spokespeople' who are looked at time and time again. I agree with every word that you wrote. It's time to hear from others in the DOC.

And as a parent of a child with D, I don't want one person, or a few people, speaking for all of us as parents, which I fear is happening. We are too broad a spectrum of parents, with such diverse children.

Thank you for writing this. It needs to be said, again and again. Thank you.

12:16 PM  
Blogger Sara said...

Last year Roche (for this example) realized that the invite list for their summit was beyond what they could manage. They invited people from that year's group to request to be on a committee to extend the invitations to the next group.

They made it clear that it would not be a single clique selecting, using the example of not asking Scott, George, and Cherise.

Since "Roche" did not do the inviting this year, and it was actually members of the DOC, I am not sure if the accusations fit.

I am not sure the invite list has been disclosed anywhere. I have been invited but all my e-mails have been Bcc'ed. Maybe we will all be pleasantly surprised at some new voices being represented?

12:36 PM  
Anonymous GingerVieira said...

Will,

I completely understand your decision, and think it opens a great door for someone new...that being said, I know there are many new folks coming this year. I know a few of the folks I recommended were indeed invited.

It's definitely unfortunate that it makes other folks in the DOC feel "less special" because they haven't made the invite list -- I don't think that is the intention. The Roche Event is just one of many...I know I wasn't invited to several events that have been put together and attended by my DOC colleagues.

If we could all go, how grand that would be. I think there's much more going on behind the scenes, that considers and includes and respects all the bloggers in the DOC, than many folks see. It isn't about who is better or best or leading. New folks are invited to the meetings each year after their efforts and work in the DOC progresses and increases.

I wish everyone could go, but I do already know there will be many new voices and faces there.

2:59 PM  
Anonymous GingerVieira said...

I'd also add that summits like Roche's are just one avenue to building your voice within the greater DOC. And on that note, it really doesn't build anything for you...you have to be active all year long, engage with other people, give your time and energy to projects you'll never get paid for, etc.

Going to a conference doesn't make you successful in the DOC. Being active and passionate about what you do makes you a successful contributor and participant in the DOC.

3:14 PM  
Blogger Natalie said...

I've been in the DOC before there WAS a DOC -- I first got on Usenet misc.health.diabetes about 20 years ago. And I DO feel like I have something to add to the conversation, even though I'm not a leading blogger. So while I understand why the big companies invite the "famous" folks, I do think there also needs to be some kind of effort to get input before attending from those of us who don't have the clout, but who nevertheless want to be involved. What representatives need to do is represent, and the only way to do that is to listen and collect information in addition to presenting your own viewpoints. Hoping that can be more of a focus in the future for the folks who do get to attend these events.

6:02 PM  
Anonymous StephenS said...

Hmm... so much for everyone to say on this subject. Hard to keep it to a brief comment. Maybe make it the subject of another summit?

I can only say that with opportunity comes responsibility. And while I rarely see a critical comment from bloggers at these events, many of which look from the outside like thinly veiled marketing efforts by wealthy companies, I also haven't seen anything to lead me to believe that the people I read are being totally used without knowing it. So far, I trust what I'm reading from these individuals. And it's important to remember that we're bloggers, not journalists. Different rules apply.

I really understand and sympathize with people who are feeling left out. But we all need to remember what we're doing this for. And I don't think it's for a free trip somewhere, even if it means we would get to hang with other members of the DOC.

Wil, for what it's worth, I respect that this was a personal decision for you. I respect you for talking about it, which can't be easy. I doubt you'll be relegated to the back forty.

6:48 PM  
Blogger Bernard said...

Thanks Wil for the thoughful post. I can't attend the Roche summit this year for time constraints. Frankly I was surprised the first time I was invited as I've never considered myself a 'leading' blogger. I do know that those summits have been hard work as we try to figure out ways to build and support the DOC as well as inform Roche and others about the living, breathing, ever-changing DOC and our needs as members and diabetics. Maybe it's time to let others take my baton.

6:59 AM  
Anonymous gina said...

Wil,

I am glad you wrote this post. I had no idea if I was invited this year or not but, before any email went out I emailed Roche to tell them I wanted to give up my seat as well.

I have never really considered myself a blogger at all, but more of a person who had a strong passion to help other people going through what I was and connecting them. I have done a lot over the years that I am very proud of, and passing the baton over to others who are doing extremely great things, is something I am completely ok with.

As another "self-proclaimed founder" I feel that my voice has been heard over the years and many people of the current DOC probably don't even know who the hell I am and I am cool with that...

I am proud of how our community has grown, and that I had a huge part in it at one time.

But, as you said I have tasted the bitter for some time as well, ( i think a lot of people have) and can only hope that people remember why they started in the first place and that we are all on the same team.

10:02 PM  
Anonymous Kathleen Weaver said...

I'm another one that is amused that some are called Founders, since I've been blogging about Diabetes since 2003.

Also not really amazed I'm ignored, as I'm not "out" there.

I don't write for my primary means for a living. Diabetes isn't my means of producing income.

Unfortunately I have even been trying to ignore the fact I'm diabetic as much as possible.

Just grossing for a bit.

12:12 PM  
Anonymous Mike Hoskins said...

Thanks for writing this, and finally opening this up for discussion. A topic that our community needs to explore and discuss, as it's one of those "growing pains" that can dictate how we're heard and looked upon by those outside the D-Community.

12:54 PM  
Anonymous Laddie said...

Very interesting post. I'm not a blogger, but a few months ago I remember thinking that "wow, it's the same people over and over again". It's not that I want any of you "founders" to be uninvited, but I do think there are some newer active bloggers who should also also be invited to the party.

Wil, at least you have some gray hair, but I often see the photos of participants and think that almost everyone is in their late 20's and 30's. That's the demographic of most bloggers but that's not the demographic of most people with diabetes.

On the other hand, I think it's quite incredible how many of you bloggers have had your writing morph into a career. I think that's great and I thank all of you for what you have done for me and for everyone with diabetes.

7:32 PM  
Anonymous Doug said...

Will, Have you also given up updating your Blog ?

Miss your perspective on our common problems

Doug

9:43 AM  
Anonymous Pop said...

I have felt that there are diabetes bloggers whose main purpose in blogging is self self aggrandizement. I have never sensed this in your writings and I have read every post you have made.(Yeah, I've got a lot of free time.) Even though you don't feel comfortable in the "limelight" I sincerely hope that you will keep telling it like it is.

4:12 PM  
Anonymous Jim said...

You have to love office (DOC) politics! I have no issues with the companies inviting the same people every year. These are private entities and can do as they please and as some have previously mentioned they want as much patient exposure that they can get. They could invite me, but they are not going to get any wider exposure of the event.

I just think those bloggers that are invited need to be honest with themselves about why they are being invited. They are being invited for patient marketing purposes. Trust me these large corporations have no problems putting focus groups together. It is common activity within the business world. So you would be sadly mistaken to think the companies think your involvement is anything other than a marketing expense. While all the bloggers say they were not asked to write about the specific event, they know you will write about it in the bloggers self interest. They also know if they do a good sales job(flight,hotel,dinner, drinks, free product, etc)odds are you will talk positive about the event. If you don't talk positive about the event then the blogger will quickly notice these invites will dry up. As a blogger you want to attract people to your sight to increase your exposure and how do you do that? By talking about new and exciting things! Lets be honest, there's only so much some (not all) of these blogs can write about this disease before it becomes the same old story. Talking about how you successfully or unsuccessfully bolused for cupcakes is interesting for about 2 blog reads.

So ignore the office politics and people feeling being hurt. Do whatever the hell you want to. Heck it is good exposure for you and your blog, so I screw the cry babies and keep doing what your doing.

9:43 PM  
Anonymous Amanda Sheldon said...

This is such a great discussion and I am sorry I missed it in June (thanks to David Edelman for bringing my attention to it through his blog today). As a company representative for Medtronic, I can tell you that determining who to invite to our annual Diabetes Advocate Forum has been the hardest part. We began with inviting those DOC members that we had built relationships with over the years and have added to that list at the recommendations of participants. We hope that those who participate are serving as advocates and representing their readers and the broader DOC at large. What we at Medtronic would like to know is – how can we hear the rest of your voices better? What would you like to see from us? We would really love to hear – please contact me through @MDT_Diabetes, through our blog or Medtronic Diabetes Facebook page or email through loopblog@medtronic.com. Thank you Wil for inspiring the dialogue! Amanda Sheldon, Medtronic

4:00 PM  
Blogger Minnesota Nice said...

Bravo.

8:53 PM  

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