This is to gauge opinions of forum users on whether their posts should be capable of showing within search engines. Just to add your vote is totally confidential.
There is a mechanism (PS I can log in again don’t know what that was about… Would someone like to see if they can access my profile again now?.)
There is a mechanism in discourse - this platforms underlying software - That is not enabled which if set would allow people to post anonymously when they chose not to have their emotional needs publicly visible.
Like all of the conversations we attempt to have about how best we can give fellow wobblers #StrokeWarrior #StrokeThrivers support and perhaps where that overlaps with how the forum features are administered we have no venue where this sort of topic can be discussed except either in the open - arguably not best for all interests, or in the lounge - a totally underused asset that I have suggested to Nicola would be a good place for all those who have reached Regular TL3 can act as representative of the rest of the community to discuss things, or by creating a elected body of representatives which the stroke association appears completely disinterested in.
I got the impression that discussions in a quasi medical community be ‘closed’ was a legal requirement in the US. You are perhaps suggesting it is a moral or ethical obligation that is not being met by your question above? I would agree with that.
3¢
I am happy that what I write on this forum is visible to Joe Public. This is not just about me and those who have been through this experience, it is also about those who do not know what this is.
When I joined this online community I was informed that the posts here are generally visible. (Though there are areas only accessible to those with membership.)
I choose to write here. I do not offer any details that personally identify myself.
I feel that the sort of thing that can be read here is not something I want to have hidden away. Life can be tough, but also have its triumphs and joys. I definitely do want it to be generally known what existence for those affected by stroke can be like.
Of course specific personal details should not be available for sharing, but I think the Stroke Association does a pretty good job of handling that.
There are only a handful of forum users who publish their private self-identifying information and as far as I know they are informed again, sometimes several times, that this is contrary to guidelines.
I have discussed with others a particularly uncomfortable wee infection. It isn’t something I would normally talk about in public but I feel I have sufficient anonymity here to be quite free in discussing this matter. It became apparent that people who have had stroke are susceptible to this and other complaints. Such information need not be hidden away, in fact open discussion in my opinion is a more healthy option. I described how the condition plunged me into depression in addition to discomfort both of which immediately lifted after a couple of days on antibiotics. Whoever heard of antibiotics relieving depression?
I suppose it is possible to view all this as an exclusive club, but I would rather view my existence as being a member of a much larger club, namely, the human race. Being a part of that is full of opportunity and offers a future which might be mysterious but is not daunting. I have my story and I want and need to tell it.
Everything is subject to consequences. Even locking yourself away and out of reach will have results of its own.
keep on keepin’ on
I’m not sure where I sit with this, on one side I am not adverse to having the forum readable without needing to register, as I find online closed communities to be contrary to how I see the internet being beneficial to the collective user knowledge base. I’ve tried doing some cursory searches and have come to the conclusion that it is fairly difficult to reach portions of this forum as a human user, I would be more concerned about algorithm bots collecting data that might be misleading. However, that would also be possible from within the forum, even if gated. I choose to have my profile name and picture relatable to the person that is me behind the computer, if I didn’t want that I could just as easily use a moniker and have an abstract badge, I could say I’m from North Wales, and I feel that would pretty much obscure my identity enough to post freely on whatever matter mattered most. On the flip side, that would make a fairly glacial forum as we benefit greatly from seeing ourselves reflected in others, particularly by name and face, our brains are known for being magnetised by the familiar. Then again, I did do a piece to camera for the Stroke Association, so I guess I’m already out there on the record.
When I signed up it was made clear that posts are visible on internet & if i recall correctly it encouraged us to pick a username rather than our real name. That is also the reason why people are discouraged from using personal info & putting any personal details in a post. So i guess i’m saying everything i’ve posted is fully in the knowledge that it can be accessed via google or other search engine.
I think this needs to be come with conditions. Can Google find a post but a user needs to register to read the entire thing? How about AI which is making search engines redundant as they scrape all of the info from websites? How can this be blocked by the SA?
I think that’s a very good point emg.
I almost wonder if it’s worth posting a blatant lie in your details ?
i would not like any posts i make to be in the public domain. big brother knows too much already! we post personal details, feelings, troubles trusting what is posted is safe within the security and confidentiality of the stroke ass.
i do want a rant for the above off people please. i have already started not posting because of this
if this forum is becoming another social media platform then im out… I use the forum with private intentions and assume my info and posts (although not many), are regarded as such. For the like minded people on here in the same situation.
Folk are voicing their concern that the forum is currently configured so that it is readable by anybody on the internet and that options that would allow members to select when they wanted to post anonymously are disabled.
The forum has been configured like this for a long time despite people raising concerns. A number of people have left and requested that all their valuable contributions are deleted as a result.
Given the level of tech savvy of members it’s probable that many do not realise how it is set up at present - as you have maybe demonstrated
So there is no request to make it more liberal but to make it more tuned to the sensitive of folk’s needs
Caio
Simon
With the default discourse platform setup there are both public and non-public categories, with the non-public ones those are only visible to logged-in members.
Don’t see any non-public categories configured here, that is something that could be changed by the administration but they may have reasons for not wanting to do that.
It can help for a community to be able to grow and expand if there are some publicly visible categories that are indexed by search engines, but ideally should be a choice of members if they want to make posts in that category or not.
They do have setting enabled here that hides profile cards from being viewable to non-logged in users, reads as this:
Basically anything we request gets ignored…
If folks want to establish a new community site can do that instead.