@Mfairma,
I see what you are saying and agree in considerable part. But a story is only strong if it is perceived as strong by a listener. Who is the story intended to convince? As a doctor I guess I am the sort of person you might want to convince.
My interest was never first the medical community, but the public. I agree that approaching the medical community is a different animal and that doing so requires a different approach. You may feel differently, as as a doctor, but there is such widespread and reflexive willingness to dismiss patients as unreliable observers of their own lives among the medical community and, of course, such widespread prejudice against this disease that I don’t think tailoring communications and engagement styles solely and specifically to the needs of that group is a particularly effective approach. Particularly when doing so means playing down the parts of our narrative that make our story so compelling. The lack of confidence, clarity, and, indeed, militancy that is demanded by that approach puts us in a worse position relative to other groups that advocacy need consider, helping to send the message to the public that this is not really a crisis. While advocacy must consider the needs of the medical community, focusing solely on the needs of that group and ignoring the fact that this is first and foremost a political problem that will ultimately have a political solution is shortsighted.
Advocacy need not be monolithic. Engaging the medical community and working within the system, as advocates like my mother do, may demand certain styles of engagement. But that style need not, and should not, define the whole. And that’s a big part of what i’ve been arguing in this thread, that a narrow-minded dogmatism about engagement styles and strategies harms the cause.
To your question about stories, in talking about suicide, the point wasn’t to convince the HHS people attending (who were the same people, by the way, making half-hearted, ever-shifting claims that they couldn’t fund research because NIH budgets weren’t increasing, claims they knew to be empty), but to try to help the community to see the power in our narrative and to think differently about what that narrative meant and how we might convey it. The reaction among HHS officials, by the way, was predictable. Awkward silence, empty expressions of concerns, and an immediate pivot to the need to deal with depression; no engagement with the central question, which was expressed clearly enough that the pivot to depression reflected either inability to believe the disease could be that bad (a tall order given years of compelling presenters) or a self-serving desire to move past uncomfortable realities they helped prop up. But I didn't write my portion believing they would suddenly get it; it wasn't my first CFSAC. (Read my first CFSAC testimony if you want to see naive belief in human goodness and faith in government; I did work in government myself at that point). I wanted to inspire change in us, and maybe, secondarily, to help drive further into the record that they knew how bad the disease was and did nothing.
I have been inspired by patients who lay bare themselves to make plain the crisis. Bob Miller presented at the first CFSAC I watched and struggled and failed to hold back tears as he spoke of how he was too ill even to attend his boys' baseball games. That, to me, is the stuff of change, the stuff that can help to inspire change on a scale much greater than the incrementalist crap we've gotten heretofore. It may have its place, but a movement composed entirely of solicitousness, circumspection, and forbearance is not one that will achieve results on a timescale that matters for people that suffer so severely that they struggle to make it not just through the day, but through the hour. I may not be that sick today, but I have been, and I know the well goes so much deeper.
) who might seek to derail us from that; it would be too easy to completely unravel what has been achieved so far, which is in fact a lot.
