I wrote this as a response to my good friend Scott Benner's post Our Community at Arden's Day. It is also a response to Sara, Jess, a classic by Bob, a new blog by Christel, a host of Facebook messages, Tweets, texts, phone calls and more. I originally posted it at Arden's Day and have copied it here.
In my view empathy is what hold the diabetes community together. By empathy. I mean to honor another’s struggle without offering them a trite formula. I have written about empathy a lot. I think the DOC does it well, most of the time. Lots of folks do that. Scott, you do. So so Sara, Jess, Bob and countless others. I hope I do, I hope Tom gets back to it.
From my perspective both the lines of honoring and trite were crossed, and crossed with forethought, by DRI. That is unfortunate, to the point that I agree with your assessment of both cruel and unthinkable.
Here is why I say DRI forthought.
This came days before Tom's Facebook post. It is a DRI email teasing "The Next Quantum Leap: The Biological Cure" in the subject line. Clearly the "The Biological Cure" hype was DRI's communication plan. So in addition to Tom's rationalization laced, "I'm sorry," DRI need to be accountable for the hype they apparently hoped to manipulate. They need to return to honoring the struggle and apologize for trite formula hyping "The Biological Cure" to serve their immediate ends. That should happen without the ‘but we didn’t mean it they way we clearly said it’ we have seen.
Let me be clear I am NOT saying encapsulation is a trite path to treatments. Hyping it as "The Biological Cure" is. "The Biological Cure" is not the same as saying it a very promising path to a possible cure that is soon to enter human trials. As they say on sesame Street, "One of these things is not like the other." One is cruel, the other is honest.
Living and breathing the science of type 1 isn't same as the emotions of living with or parenting a child with Type 1. DRI has shown the clear appreciation of the relationship the two. In an 2010 story, Rive Greenburg quotes DRI’s Dr. Ricordi saying, "I hate to over-promise because so many people have been disillusioned." So it is even more disheartening to see DRI choose hype and discredit Dr. Ricordi’s prior empathy for the community.
Calling it "The Biological Cure" now completely discounts what that they have achieved buy putting it on the same footing as every other claim of a cure in 5 or 10 years.
Hyping a cure in 5 years as is not honoring the struggle. A cure in five years is THE standing joke of false hope. We all know it and know why. I suggest that by definition anything 5 years out is NOT a cure. Five years is a lifetime with type 1.
Am I very discouraged by the premeditated choice of hype over empathy by DRI? Absolutely.
I suggest that tuning out their communications, specifically this campaign is not a trite response. If this becomes a successful communication / funding campaign, who will be next to play the hyped cure card? When will we see copy cats? What will that serve? How does that honor the struggle for the next few years?
I decided to unsubscribe to DRI email as a step in turning down their choice of hype. I encourage other to do so too. I did so to send a small message that choosing hype over empathy is self selection out the community that honor other’s struggle without offering a trite formula.
I welcome an honest conversation about advancing encapsulation. This wasn’t it. Rewarding it as such only invites more hype.