This being the season of goodwill, my goodwill message to the Alzheimer’s Society is that it should open a dictionary and learn the meaning of the words ‘support’ and ‘discussion’. Some of us dealing with dementia in our relatives and friends wonder why nothing changes for the better where dementia is concerned; why progress is so slow; why so many people have to tread the same stony path that others have trodden. The answer may lie in the Alzheimer’s Society’s online forum.
The AS’s online forum Talking Point claims to be “an online support and discussion forum, for anyone affected by dementia. It’s a place to ask for advice, share information, join in discussions and feel supported.”
The AS has destroyed the true meaning of those words. With its dictatorial monitoring, editing and censorship of posts, the AS only allows words to be used if they match those chosen by the AS. Anything that doesn’t conform to the AS’s desired point of view is amended, edited or deleted by the AS. Without discussion.
The Alzheimer’s Society condones strange practices within the administration and moderation of its forum. It allows the banning and removal of people affected by dementia who have been members of the forum for many years now. At the start of this year, one much respected member (since March 2006) who had posted almost 5,500 times on the forum has been deleted. She’d been a member for longer than some of the moderators who have now condoned her removal. She had been extremely supportive of others, providing much care and help, much respected by other members too. But zapped by the AS, suddenly. Without warning.
The reason given? It was deemed by the AS that she was not posting as the AS wished her to post. No discussion; no appeal; just zapped. The Alzheimer’s Society’s word is final.
The AS condoned the removal of words like ‘Winterbourne View’ from every single part of the forum. The reason given? It does not allow mention of care providers by name. The strange AS Administrator who carried out that action failed even to take on board the fact that Winterbourne View is no longer; it is no longer a provider of anything. It no longer exists. (It’s difficult to argue that Winterbourne View ever was a ‘care’ provider, but that’s another debate.) The salaried AS employees spent time searching for and deleting all mention. Same applies to Southern Cross – all mention of that has been deleted too. Even though Southern Cross no longer exists, and is not a care provider.
Rules is rules. Common sense has gone out of the window, as far as the Alzheimer’s Society is concerned. Censorship rules.
The AS condones the editing of posts by its moderators and administrators, even months after they’ve been posted. It makes one wonder how many other posts have been doctored to suit the AS, without discussion with the original poster, and without appeal to reason.
It is censorship gone mad. What is the AS so afraid of, that it needs to do this to people who are trying to change the world of dementia care?
One forum member posted recently that they’d only just read the Terms and Conditions for the first time – something referred to constantly whenever a moderator wants to spank a naughty member. The Terms and Conditions were described, by this member, as ‘draconian’. They certainly are just that. The ‘infraction’ system is also draconian and childish, in the extreme.
The membership is not allowed to voice any objection, on the forum, to their post having been edited and/or deleted – or they receive a ‘yellow card’ for doing so. Then another. Then a ‘red card’ ….. and so it wends its childish way along the path to destruction of anyone who questions.
The members are required to contact the mods or admins by PM to ask for explanation. However, often no explanation is given. The member is then zapped before they can blink. Their account is deleted, just like their posts may have been. There is to be no discussion. The AS word is final. Unexplained but final.
A member is not allowed to delete their own account. The figures of true membership would then be very different, but it suits the AS to make it seem as if it has more support for its forum than it has. In reality, just a handful of regular members use what has now become a chat room.
The same rules don’t apply to the AS chosen moderators though. They are allowed to post whatever they choose. No matter how arrogantly rude they may be. Some are worse than others, especially those that come out after dark. One AS chosen moderator even posted the precise location where one member lives, with a barb attached to her post, of course. That surely should have received a ‘red card’ followed by deletion of her membership too. But no. She can do whatever she chooses to do, even though the AS knows that she is provoking, inciting, stirring ill-will and uncomfortable feelings all round.
The moderators are immoderate enough to allow certain unfair comments to be made against a member – but only if it suits the moderators’ position, for whatever reason. They have their favourites who can do no wrong, in their eyes. They have their chosen victims who can do no right, in their eyes.
If the Alzheimer’s Society wants people affected by dementia to be able to share their experience of dementia in a free society, it must allow people to speak freely. The moderators should be moderate, and should moderate sensibly, rationally and elegantly. And with dignity and with compassion. The current watchwords of dementia. They should not feel the need to read every single post as it is posted, and then to alter it just to suit themselves. They should not feel the need to amass a fan club amongst the membership, who are required to express their thanks to the moderators for ‘keeping us safe’.
The Alzheimer’s Society is destroying support for dementia, for its forum and for the Alzheimer’s Society.
The Alzheimer’s Society is consenting to the creation of a whole new generation of Stepford Wives.
Seasonal Greetings to those affected by dementia. A plea to the Alzheimer’s Society to support them and to allow genuine discussion of the good, the bad and the ugly.