Anonymity, secrecy and rejection of participation by the modern charity

In my former life as a pseudo-healthy academic I researched, wrote and taught extensively on ethics and what the absence of ethics in research and organisations mean for the individual. When I went from mildly ill to home- and sometimes bedbound-ill I suddenly had ample opportunity to observe communication patterns and online organisational behaviour towards sometimes very ill people. I am referring to charities and patient organisations whose purpose it is to represent those very ill people. It seems that these organisations forget their own purpose on occasion. When things go wrong and patients do not feel represented by a charity a number of things happen:

  • The charity ignores their concerns
  • The fervent supporters come out in force to verbally abuse the patients that have asked (justified) critical questions
  • The charity continues to shroud itself in silence
  • The patients who ask the critical questions start feeling alienated
  • Some, not all, of the fervent supporters transmogrify into pretty nasty attack dogs whose offensive, hurtful, and often unstable behaviour understandably scares off or at the very least temporarily silences those who ask questions and seek dialogue.
  • The charity might, at this point, block those who seek dialogue, not those whose behaviour has been on the questionable side of things.
  • Simultaneously, a third group of patients will pipe up and express regret or even outrage at the ‘troublemakers’ and the terrible, unnecessary quarrelling.
  • The people seeking dialogue and/or asking critical questions are thereby invariably transformed into troublemakers
  • Gloomy predictions will ensue as to a future in which nothing ever will be achieved as long as ‘some people’ don’t understand all the great stuff charity X does for them.
  • The fervent supporters, attack dogs, peacemakers merge into a new group called the apologists, that also contains a sub-group called hero worshippers.
  • The heroes are Charity X.
  • Charity X might, at this point, decide to take action. Depending on who the person asking critical questions is (or the exact nature of the question) they will either deign to send a much-delayed reply (not signed by an actual person but with Charity X) or they will keep on stonewalling.
  • When this organisational behaviour is questioned (e.g. by way of discussing it openly on Charity X’s forum, a time-honoured participatory democratic tradition that appears to become outmoded) the fervent supporters cum apologists will provide one or several of the following responses:
  1. Charity X is the greatest, how dare you
  2. Charity X has bigger fish to fry than answer to all and sundry alternatively your particularly stupid question (it is not always nice to receive an instant evaluation of the relevance or intelligence of one’s questions by people who know nothing about me or anyone else who enrages them for the time being)
  3. We would be totally lost without Charity X, they are our only hope
  4. You (the critical thinker cum troublemaker) should be ashamed of yourself
  5. You ungrateful bastard you!
  6. Charity X is the New Messiah, bow to them splendidly or else.

If the above is not the sound of a fledgling Cult I do not know what is. To return to organisational and individual ethics, it is debatable if charities should shroud themselves in mystery, secrecy, and downright anonymity. Why sign up for a charity on hearsay pertaining to their greatness? They may be great, and some of their actions may be highly laudable, but whatever happened to dialogue, organisational ethics, accountability, and transparency?

Please, remember what I said initially: charities’ explicit mission is to improve the status quo for (very) ill people. Very ill people, irrespective of their ability to think critically, are vulnerable. Fervent supporters, attack dogs, critical thinkers, troublemakers, and the self-perceived peacemakers are all incredibly vulnerable. Charities should be respectfully aware of that. They should not stand by and watch patients verbally attacking other patients. They should not let sufferers police other sufferers and they should not ‘speak’ through their attack dogs, which is what they do if they do nothing to stop it.

Before anyone accuses me of infantilising the chronically ill and blaming the charities for not taking them by the hand and feeding them manna from heaven, let me explain how easily it is to create an entirely different organisational climate in which individuals feel included and noticed: publicise a statement on the organisation’s policies regarding the tenets on which it rests. Do not run a Facebook forum if you do not have the time or energy to moderate it. Yes, we may all be adults but the problem is that not all of us know how to discuss in a fair way and again, people are vulnerable and ill, different rules ought to apply, at least from an ethical standpoint. Do not ever be tempted to either arrogantly dismiss sufferers’ concerns or condescendingly respond to them. Be the responsible adults you accuse critical thinkers of not being. Do not accept uncouth behaviour on the part of your attack dogs (in fact, don’t create a climate that fosters attack dogs in the first place) and always encourage politely worded questions and debate. The latter is good for you as an organisation, you will ensure you stay just that: organic. A closed system has no historical precedence of sustainable success.

The argument that people running charities are themselves ill and have very little time for ‘internal bickering’ is invalid when they, at the same time, create their own Catch 22 moment by ignoring offers of help (e.g. moderating a forum). Not responding to engaged, committed and curious yet (very) ill people is bad judgment as well as morally objectionable as charities are dealing with people who spend their days in isolation and pain which the charities further cement by behaving like the rest of society. There are very few havens for the chronically ill and what the fervent supporters and attack dogs miss is that they contribute to establishing structures that will exclude others who do not blindly follow and ‘believe’. Ultimately, even the happy-clappy or aggressively protective supporters will suffer because any organisation will inevitably die a slow death when dialogue and critical thinking are suppressed. Another development, as far too many examples have shown, is that charities will stray from their initial purpose and slowly turn into a charity driven by murky interests, bad compromises and a false sense of pragmatism.

Anonymity, secrecy and rejection of various forms of participation on the part of the ill will hurt supporters one way or another. I do not think the fervent supporters cum attack dogs are happy snapping angrily at co-sufferers and it is painful and scary for those who seek dialogue to be constructed into troublemakers getting their heads bitten off. So, charities, indulge in some soul searching, unearth your personal and organisational ethics and accept the responsibility that comes with running an organisation.

6 thoughts on “Anonymity, secrecy and rejection of participation by the modern charity

  1. Greg Crowhurst

    This article is a brilliant observation – a wonderful contribution. Thank you ! You describe so accurately the ” attack dog” phenomena that seems to be endemic in support groups, ostensibly there for the most ill, yet so scathingly intolerant of critical thinking , so precious about not “upsetting” members; a frequent theme seems to be a “ban” on being “political”, as if that is far too controversial. Meantime the political assault on the sick and disabled has never been more aggressive. Diseases like ME are political to their core.

    I have been greviously charged with causing distress by several high profile groups, or attacked, publically, threatened with expulsion by group leaders. I have noticed however this is not just an online phenomena. As Chair of a local advocacy group I suffered scathing attacks, over many, many years of campaigning, I have noticed a nasty, bullying attitude to those who dare to take a stand or speak out.

    This is an excellent , very well thought through summary of the issues; such an important article.

    Liked by 2 people

    1. Utting Wolff Post author

      Greg, first of all, I am shocked to hear of your experiences over the years. Despicable! It is a miracle you are still going strong. Second, I totally agree that ME and disability as a whole are political, complex problems that are essentially political. It is interesting to hear that the online abuse is not unique, I would have thought people might be a bit more careful in choosing their words in face-to-face meetings. Maybe they do choose their words more carefully but their actions may be even worse. I know from my research that the lack of participatory democratic structures in any organisation will inevitably lead to losses for everyone. Short-term profits, yes, but there is no sustainability, no learning, and ultimately no genuine knowledge to be had. Thank you again for your generous comment & stay strong, we need you.


  2. Utting Wolff Post author

    Thank you so much, Chris, for commenting. Yes, we hope some charities will discuss at least a few points highlighted in this post. Eirik Randborg has sent an encouraging message on Twitter, saying he will discuss this problematic at their next meeting (he’s on a Norwegian charity’s committee). That is the sort of reaction we were hoping for. Jane Colby of Tymes Trust was equally open-minded and thought the post was a prescient analysis of the current state. We would be very pleased if we could contribute to a more open climate in which ill people can relax – and think for themselves and where charities truly represent those who are ill, not merely a few chosen ones.



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