Audiences and an Activism Abyss
A logical progression from When PR means Public Relations part 1 would now involve a principled discussion of the target audience(s) that M.E/CFS representation needs to address, however given the current media position of M.E/CFS a purely principled consideration is redundant without also considering the pragmatic question of whether M.E/CFS advocacy is even achievable given the abyss into which activism has hurled the very image of M.E/CFS both as a medical condition and as label of people.
The principles that should be at the forefront of an effective PR approach to M.E/CFS (audience engagement, trustworthiness, authority and consistency) are the very things that M.E/CFS activism has not only neglected, but has both rejected and destroyed, creating a global image of M.E/CFS sufferers as hysterics and fanatics. Every abject M.E/CFS PR failure is excused on the basis that the world is unfair and nobody loves us, that we are worse off than people with HIV, that there is a worldwide conspiracy of concealment and on and on and on in a self confirming spiral of self approved isolation and victimhood. Everyone should be in absolutely no doubt creating an effective message from that perspective is impossible, even incidentally associating a PR message with that perspective will kill the message dead. No useful audience can be engaged from such a perspective, no trustworthiness communicated, no authority claimed, nor useful consistency be demonstrated. Such a position has to be abandoned, and a scorched earth policy enacted. In the media the loss of trust is understood to be highly contagious, which is why one of the worlds most resilient media brands was forced to obliterate a profit making (a rare thing ) newspaper after it lost the trust of its key audience. That audience being the advertisers. M.E/CFS advocacy and activism is now so damaged as to raise the question of whether it is even wise to use the terms advocacy and/or activism where a key audience is to be addressed, and it may be far more pragmatic to use a term such as representation, it being less tainted.
The tainting of M.E/CFS advocacy and activism can be located in three conditions:
1. Lack of (or belief in the lack of) opportunity for a grass roots demographic to engage with, to participate in and to shape, the representational message about M.E/CFS as it is expressed by established M.E/CFS organisations.
2. Lack of a consistent assertive image of effective M.E/CFS representation which is distinguishable from and actively rejecting of: altmedary, hack psychology, self helpery, quackery and most significantly, aggressive fanaticism.
3. The embrace of an hypothesis that presents a single causative agency as the defining images of what M.E/CFS is, of who it is that is affected by M.E/CFS, and of who it is that is mediative of treatment and cure of M.E/CFS.
I can already hear the clamour of What about the psychiatrists, its their message that make our lives so difficult ? We (I, you, us) can never (except under repressive regimes) have control over their message (whoever they may be), the only control that we (I, you, us) can have is over what we say and the images that we project. Certainly we can respond to them, we can even be clever and act proactively to their predicted future messages, but complaining about them and their message only confirms our impotence. An important PR rule: never let the opposition define who you are or what you have to say.
Given the tainted picture that M.E/CFS representation now inherits, the question: Which audiences does M.E/CFS representation need to engage with to advance the interests of M.E/CFS affected people ? has to be prefigured by the question, What is needed to escape our self excavated pit of association with dubious messages and even more dubious activities ?
Were we to be talking about a single corporate entity, the answer would be relatively simple, albeit one that maybe highly challenging to implement. First and foremost would be an explicit statement of intolerance for the substance of the dubious message, reinforced by strong unequivocal presentation of a message affirming a new stance. In respect of M.E/CFS there is no single corporate structure, nor even a co-ordinating structure between established organisations, and the results are frequently ineffective or entirely absent responses from organisations and disparate and confused responses from often warring cadres of M.E/CFS affected people. For any observer of this process, which may particularly include those who would consider themselves as having been addressed by M.E/CFS advocacy and/or activism the lack of any cohesive response of itself questions the validity of the trustworthiness, authority and consistency of any message coming from M.E/CFS affected people.
Defending the Indefensible
The current incompetence of M.E/CFS advocacy and activism has been painfully demonstrated by the challenge of the allegations of intimidation of scientists. The response has been a hideous melange of obliviousness (US M.E/CFS organisations), equivocation and blaming the messenger (UK organisations) and outright apologism and denial (forums and blogs). Nowhere has there been any sense of the need to appraise what long term effect this collective response has produced, yet the most basic understanding of communication dynamics informs us that failure to address, to equivocate, to blame others, to embrace apologism and to pursue denial in the face of legitimate concern, has the effect of establishing distrust and withholding approval of authority. Without trust and without authority nothing that M.E.CFS representation has to say can have any value. The audiences that M.E/CFS representation now needs to address have to be approached not just with a message that is designed to effect change for those affected by M.E/CFS, but to establish long term trust and approval of authority. Ill deal with audiences in detail in a subsequent post.
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Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
When PR means Public Relations, not a mythical rebirth part two.
Blog entry posted by In Vitro Infidelium, Sep 19, 2011.