The New York Times recently ran a multi-media news piece about a Texas family's challenges with type 1 diabetes. The 12-minute video and accompanying article on Jan. 26 was titled "Midnight Three & Six" in recognition of the times per night the D-Mom has to get up to test her 15-year-old daughter's blood sugar levels.
In the first week online, this piece generated 179 comments from all across the Diabetes Community. Many of them slammed this Chamberlain family for portraying diabetes in a "melodramatic" way, sending a message out to the general public that isn't representative of a typical T1 family. Many accused the family of fear-mongering for the sake of fundraising for the Artificial Pancreas.
Of course, not everyone echoed those complaints, and many embraced the "Your Diabetes May Vary" mantra and thanked the family for sharing their story, which they found so much like their own. Even some who don't agree with the message have thanked the family for raising awareness.
Personally, I do not feel the NYT piece spoke to my experience, but I nevertheless echo appreciation for the Chamberlain family's willingness to put themselves out there. And even though my D-life over the past 30 years hasn't been as challenging as they describe their past 9 years, I constantly struggle with that line between "I'm sick" and "I can do anything" and this video brought many of those conflicted feelings to the surface for me. The question that came roaring out of this was:
Just what messages do we want to send the world at large, and do they all need to be the same in order to matter?
This discussion bled over into diabetes forums and some excellent blog posts like this one by Moira and another by Laddie, with some in our community adamantly insisting they don't want this "dramatic" message to be the one shared about their lives. And from there, it was interesting to see many folks highlighting the success stories of celebrities and athletes who've achieved great things despite their diabetes. Examples include the inspiring Sierra Sandison whom our community helped name People's Choice for Miss America last year, musician Adam Lasher who's a T1 currently competing on American Idol, and world-class athletes with diabetes who've done things like climbing the world's highest mountains and skiing the Olympic slopes -- as well as "regular PWDs" living well and achieving so much in their daily lives.
All the while, our community's been uniting for the third annual Spare a Rose, Save a Child campaign that's raised over $30,000 in the past two years to provide life-saving insulin for more than 400 children with diabetes in the Third World.
To me, this is exactly what our community is about -- sharing diverse stories that raise awareness and help us connect with others, uniting in celebration of big or small victories, and also using our collective voice to make a difference in the world.
As all of this was unfolding online, a group of diabetes advocates including 'Mine editor AmyT gathered for a Sanofi-sponsored advocacy summit last week in Washington D.C. At that event, some health advocates from other disease states apparently remarked that our D-community isn't united enough to make a real difference, that we have too many voices and unaligned messages to make a real impact.
The implication was that it's a failing on our part as advocates because we're not using our numbers (29 million, yo!) to truly transform public awareness and create a sense of urgency around diabetes. The same message came last summer during the first Diabetes Masterlab -- a patient-led advocacy event -- when a leading HIV activist admonished us for not achieving "Movement" status, thus keeping diabetes small potatoes in the grand scheme of public awareness.
I'm sorry, but I disagree.
We do unite when we need to, as a Diabetes Community -- and please note, I capitalize those words purposely because I feel so strongly about what we've accomplished and our potential to do more. When we get together, we truly do make a difference -- even if it's step by step.
Examples are not only the annual #SpareARose fundraising campaign, but also pushing for an unprecedented virtual town hall discussion between the D-Community and FDA (thank you, @diaTribeNews team!) and how we crashed their system because so many passionate people showed up. The amazing StripSafely grassroots campaign has had a huge impact on pushing for tighter accuracy standards on glucose meters, and now the CGMSafely campaign is making great strides in pushing for better access to live-saving continuous glucose monitors.
We've united to sign successful petitions to get lawmakers to insert language into legislation about funding diabetes research, health plan coverage of diabetes, and access to affordable supplies, or sometimes to remove language that we've rallied against. There are also things like the Big Blue Test, an amazing awareness + fundraising campaign that's raised over a quarter-million dollars and spread awareness nationwide even without the involvement of any of the big national advocacy orgs (thank you, @diabeteshf!)
And I'm proud to be a part of DiabetesMine, which has helped moved the needle forward on technology and innovation with our own patient-led event series -- connecting movers, shakers, regulators, clinicians, entrepreneurs and more with activated patients. That's a form of advocacy in which patients become catalysts for change.
This is all evidence of what we can and do accomplish, in addition to the important tasks of sharing stories and connecting peers, spreading the You Can Do This mantra and writing blogs or having Twitter discussions about diabetes.
If any of that needs to be sacrified in order to "unify or coordinate," count me out. No thanks.
How much the general public understands diabetes isn't my barometer of how effective we are on every issue.
I'm proud of what we do in the grassroots diabetes patient community, and I believe much of the strength lies in varying voices airing differing opinions, illustrating that the challenges of diabetes take many forms. And while I do think we need more organizational coordination at times, I'm not convinced we need to be coordinating all messages and voices to boil everything down to a single communications platform.
I may not agree with everything I hear or read about, like the call to change the name of type 1 diabetes. But that's very important to some people and I strongly believe those folks need to have their voices heard.
Just as I personally would rather see more funding go to diabetes technology research that can help us now, over vague, non-tangible cure research that may never come to fruition, that's my individual choice. And it is not my goal to push anyone else's voice or message to the side.
So no, I don't feel the Texas family in the NYT story necessarily speaks for me, but I nonetheless appreciate them raising their voice. I appreciate the Times' willingness to feature a diabetes article and video, and I appreciate all who commented with their opinions and shared their own stories.
The bottom line is that the squeaky wheel does get the grease -- but the wheel can make just as much noise when the squeaks are coming from all corners of the community rather than one source. Lots of patient stories and opinions taken in aggregate are very powerful.
It all matters and adds up to a collective voice that can't be ignored, IMHO.