What is the Purpose of this Forum

[mamamax]

What is the purpose of this forum?

Last I heard (and the reason I joined), NSF was a community center/patient led forum giving all patients and families the opportunity to receive support in an environment that shows courtesy and respect for all, and by, everyone. My understanding that our communication is to be open while showing courtesy and respect.

Why then is this so lacking, so often?

There is another scoliosis forum with similar standards and goals - SSO. There, the goals and purposes are upheld. My understanding that there - when a member breaks the rules (i.e., displays complete lack of respect and utter disregard for courtesy towards others) that a suspension is enforced. Such moderation serves to keep the peace and ensure that patients and parents have a safe place to communicate openly in an atmosphere of courtesy and respect. This has added benefit of encouraging such professionals as Lori Dolan (Director of the upcoming BrAIST Study) to stop by and share important information with patients and parents.

Why is it that we cannot do this here?

[Pooka1]

Why people post to this forum

I wrote this a while ago. It might be relevant.

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There appear to be several reasons why folks post. There also appear to be several categories of posts that individual people want to see.

When someone posts with intention "A" and another person reads it as intending "B," then no constructive communication is happening.

For example, I like dispassionate, fact-filled, hopefully humorous, stripped down posts that have some defensible conclusion based on stated evidence.

Other folks may want moral support on an emotional level for a surgery decision per se and not a data-rich evidence-based argument at every instant.

All expectations need to be filtered through the perspective of the person who wrote the post, something that is very hard to do sometimes.

On top of this, scoliosis is a serious condition that dogs many folks for much of their lives. They have different experiences that are all true to them. There may be wrong facts but there are no wrong emotions when it comes to this in my opinion. It is emotionally nerve-wracking and draining whether you are a patient or a parent of a patient. Stakes are high.

I have had problems with some posts on this forum. But now I try to see them as the two-way street of communication that they are. That is, the problem might be in my interpretation rather than in the post itself. But even if there is a demonstrable problem in the post itself, folks are still entitled to their own opinions (though not their own facts). Not everything will get resolved. That's just the nature of the thing.

Here's a quote I continually try to keep in mind but need to constantly work on putting into practice...

"To be hurt and to forgive is saintly, but beyond this is to understand and not be hurt at all." - the GHL

[Pooka1]

SSO might be some people's cup of tea. It is a good forum.

It just isn't my cup of tea.