We’re all on a journey.
The members of this community had an event in the past that gives us a common bond. WE share a direction but not a destination.
Vision
A vision is something shared that sets the broad direction of travel.
It’s often co-developed. ALWAYS interpreted, nuanced and amended for individuals own personality and purposes.
Often framed in words by one or two people (and maybe quite invisible to those who have neither the words nor the imagination borne of need)
Event
The general public has no understanding and generally no knowledge at all of the effects of a stroke or of a TBI, or of an ABI, nor of Myasthenia gravis (MG) or the thousands of other related conditions. It doesn’t want to know! Couldn’t cope with the reality.
When one is teleported from the general population to a post-stroke life then one becomes part of a special interest group.
We have information needs, We have sense making challenges - often also PTSD.
Instantly we have a need for information we have no concept of.
We are initially isolated from those who understand our needs and we are faced with a subset of members of the general public who talk in foreign tongues (EG Latin or PIP forms) of arcane and unintegrated knowledge.
There is no empathy.
There is often scant true understanding or caring.
Peer Support
By coming together we find breadth and depth of relatable interpretation, useable understanding, of empathy, of pathfinding, of purpose, of a chance to assemble a life from the fragments of the previous one in this new and alien landscape.
By coming together we can explore our altered emotions, our trauma, our sensitivities and deficiencies and strengths and potential and aspirations. Show and celebrate our achievements.
We form bonds with emotional content.
The strange landscape is strewn with boulders and bear pits as well as just the general challenge of how to navigate it’s many new and alien elements.
Others can give us advice, directions, Relate experiences, give warnings that help us avoid or pull us out of trouble if we have not been able to avoid.
The shared understanding and offering of practical support, emotional support, forming bonds of friendship in adversity and just camaraderie is COMMUNITY
Community membership requires entry criteria and participation.
People participate in different ways. They have different styles because of personality, needs, prejudices, interests, abilities and backgrounds.
A vibrant community is one that has Requisite Variety, has interchange, dialogue, discourse, banter, distractions (that are never off topic in the context of the sociological lubrication of the mechanisms of community) - to understand this is the field of sociology. It’s impact is emotion, psychology.
Sociology is dislocated by the introduction to humanity of community such as this one that never has face-to-face interaction but it has all the depth of emotions & connections that cause love and grief and joy and gratitude and anger and all the other emotions of humanity that each individual experiences. - indeed some of them are magnified here by both the medium -digital 24x7, global- and the messages - escaping death to live permanently differently abled.
It’s a rich tapestry whose threads are picked apart by psychologists.
Our own psychology that we all endure makes this place both a joy, and a source of anxiety, and a source of succor, sadness, …
Value Produced
This new digital paradigm for community is generative of value in new ways.
It also allows for non-community members to take great value by observing, learning, absorbing adapting what applies to them. It allows halfway houses where people join the forum and only dip-in to community membership via forum-fun and or occasional material contribution **but still get (& can give) tremendous VALUE. Value that is DONATED by the community members **
Some can and would contribute in broader or / and deeper ways than others
The culture & tone of community currently drifts as there are desirable community mechanism absent that would help curation of direction.
The range of ways in which the community can pull together is limited by the lack of vision within the forum admin. Some of those ways are so easy that the only reason to limit them raises serious questions that have not been answered despite being asked repeatedly.
Other ways are hugely valuable but equally carry complexity and needs for commitment that there is not the mechanism to explore here but yet falls squarely within the forum owner’s published goals by which it fundraises. The forum owner’s actions are at odds with the forum owner’s declared values.
Democracy
Down through the ages when groups of people have come together and formed community they have choosen a hierarchical process where the voice of the majority dictates who the minority are that act - accountably- on behalf of the whole.
When that hasn’t been the case conversation, debate, is always suppressed - yesterday an escalation to unlist.
In every happy thriving human society through the ages the participants have been able to curate their own community.
When they have run into those displaying tyrannical traits they have revolted. Everybody loses (in the short term)
There have been parallels here.
Can we all join a new path please where all effort is spent on our mutual peer support and we don’t need to be spending any effort let alone a lot on these structural issues they cannot be resolved by dictate
Caio
Simon
@Mrs5K axnr911 @EmeraldEyes @pando @Elle1 @stokiejoey @Nigelglos @wattsy @Bobbi Speckles Sonia158 Susan_Jane @Rups RedFraggle Nigelglos KGB
Emm123 Sue5 christine2 JuliaH JSCAPM @Trace57 Janetb David3 l_platt Norma_Jean_K Janetb Apple
Ps it would be useful if the at limit of 10 was removed