OMG! They said what!?:
I had a peculiar combination of excitement and dread.
As the executive director of a national nonprofit advocacy organization, my ‘cause’ was very poorly known, relentlessly misdiagnosed and mistreated. The incidence of this condition is fairly widespread, but since it was so often misunderstood, we were constantly challenged to acquire greater focus and attention.
I had heard that a major network news show was considering a feature and in prime time, no less, not 6 am Sunday. This was exciting. But, the fact that producers had gone to a patient directly rather through the main office bothered me. The patient felt this was her time in the limelight and was disinclined to let anyone in.
When I contacted the producers myself, I got kind of a runaround: “we have all we need, we have a good doctor to speak as well, so we will be in touch if we need anything further.” The control freak inside me was ringing big bells, but the media attention was something we all craved.
Can you tell me the ending to this story? I bet you can.
The Surprise Was No Surprise
The story was rigged, the facts were distorted, the patient was shown in a poor light, the doctor’s quotes were cleverly edited to really make a mockery of the seriousness of this syndrome. The outrage was immediate and pervasive, and interestingly, my fault. As the leader, this was now my baby.
What to do? What would you do?
In this day and age of instant communications and keyboard courage, the accusations flew. Impassioned blog posts, letters to the producers and the board showed up on message boards and in email boxes nationwide. Patients who had always struggled for respect and compassion felt blindsided and betrayed- finding sympathy and more funding would now be even more difficult. They were used and mad and wanted an organizational response.
I was only partially prepared for the fallout: we did have some established language about the syndrome that had not been used in the TV show: on our website we created a large text box identifying our concern and language. We wrote a letter, open and direct, to the network, the producers and a number of other stakeholders, also posted on the site.
But we didn’t have a plan; any organized response or prepared language. And while the antipathy toward the program was fairly consistent, the spectrum of demands and language of the complainers was not. We did not have an engaged or mobilized member group or network.
I truly believe the network producers knew exactly what they were doing, and set out to tell the story they wanted to tell, regardless of the facts; there isn’t much you can do when someone sets out to do something nefarious. This was more than simple ignorance or laziness, this was deliberate. Really, however, so what? The damage was done.
Damage Control: Put it On the Agenda
But there is, and could have been, some preparedness on our part. We did not have an organized plan of who could and should speak on behalf of the organization; board, staff or prominent members, or physicians. Different groups demanded different things, some of which were simply impossible, such as a retraction being offered by the show. Some felt the Foundation was responsible as we somehow could have controlled their content and editing.
This was a good lesson, and one I think strengthened us in the long run, and in some surprising ways.
Primarily, that we would undoubtedly run into this situation in the future and planning would make the difference.
- A publicized ‘manifesto’ about the syndrome, what was true and what was myth.
- A list of facts and statistics about incidence, inheritance and progression.
- Resources for facts and information.
- An internal plan among board and senior staff for public relations and outreach.
- Designated speakers and contacts throughout the board, staff and membership.
- A common ‘enemy’ goes along way toward unity within.
- A human face of this syndrome, images and stories of patients.
The very nature of crisis is that of unexpected, very rarely does anyone have warning. And for most nice nonprofits, the concept that something big can or will go horribly wrong in public is so far fetched that it can easily be overlooked.
Here I come, to Save the Day!!!
Take the time, create the scenario and make some kind of plan. As with insurance, you sure hope you will never have to use, but damn glad it is there when you do.
I learned the hard way: imagine how you will feel after you negotiate your way through one of these, look back and imagine how much worse it could have been.
Call me – 310 828 6979.