Dear fellow SD bulletin board members,

This e-mail is being sent to each of you who recently participated in 2 or 3 recent threads, as some explanation is due as to the action of the Moderators. The first thread entitled "Speech" was started by David Hedley and contained some fine points about the fear factor of public speaking and the adrenaline surge that is produced, with curious results to our voice condition. However, it very quickly deteriorated and became dominated by a small group of members who somehow turned this fine discussion into talk about men wearing ladies underwear, scraping botulism off the back of the fridge, and having psychedelic dreams. Further threads followed, questioning the closure of the first thread, making further cynical remarks and these were also closed.

This sort of fast-moving interchange, which is non-SD related, that only involves a small group of people is better done using instant messaging, chat or e-mail and not the resources of the bulletin board.

3 people moderate the bulletin board. When this thread surfaced, David Barton was away at the DMRF/NSDA conference in Miami and Bill Vanderlinde was away at a business-related conference. I made the decision to collapse this first thread after 5 or 6 posts. Within 48 hours this thread had reached 37 posts, of which no more than 3 or 4 were SD related, and I made the decision to close the thread and, later, the subsequent follow-up threads. The Moderators can collapse, close and delete threads that contravene the BB guidelines, usually after consultation with each other. In this case, my two colleagues were away. My other 2 co-moderators later supported my actions, after their return, and they suggested that an e-mail be sent to you all, with an explanation.

When each BB member initially registers to join the BB they are required to read the Policy and Etiquette guidelines and agree to abide by these guidelines in their postings. This was clearly not done. You are agreeing also to join a moderated group - there are other bulletin boards that offer un-moderated SD support, if that is what you prefer.

Some of the guidelines of the BB are quoted below.

"The Dystonia Medical Research Foundation (DMRF) and the National Spasmodic Dysphonia Association (NSDA) sponsor this board to encourage patients with spasmodic dysphonia - particularly those who do not have access to a "in person" support group - to share their experiences and frustrations."

"An examination of history indicates that some rules are necessary to guide most human interactions. Experience has shown that dystonia bulletin boards are not exempt from this need. David Barton (Moderator-DB), Lloyd Pearson (Moderator-LP) and William Vanderlinde (Moderator-WV) have been appointed by the Foundation to moderate this Bulletin Board by defining rules and enforcing them. The moderators are not here to swoop down and punish you for infractions of the rules. However, they will delete postings that detract from the ability of the group as a whole to achieve its goals. The moderators are like baseball umpires. Not every call is perfect but it is final."

"Is it appropriate to post jokes and funny stories? Please make sure your posts relate to the Board's function of SD-related information and support. Although we would encourage people with SD to have a sense of humor, the Board is not a suitable place for jokes and funny stories except when they arise naturally out of SD-related situations."

"Exchanges between people that should belong in private e-mail will be deleted by the moderators unless we believe that others would find them informative and supportive."

As you can see the Moderator's are trying to look after the overall good of the whole SD community at large. If the "Speech" thread had not been collapsed and closed and was allowed to run to its 37 plus, mostly non-SD related posts, it would have completely dominated Page 1 of the bulletin board. Some of the results of this could be:

It forces people to read a lot of non-SD related posts as their curiosity causes them to open them.

It gives a wrong impression to new people coming in to find information, as the posts are not supportive or informative.

It is seen to give the impression of a small "clique" getting kicks from "in-jokes" that most others don't appreciate or understand the background.

So, it is NOT about NOT having a sense of humour - I'd be the first to tell you that I (also being an ex-Brit) have a wonderful, twisted sense of humour and can laugh till the tears flow down my face. My other 2 co-moderators are also well gifted with a fine sense of humour.

It is NOT about freedom of speech or squashing anyone's rights. When a writer of a letter to TIME magazine has his/her letter refused for publication or edited down for brevity, does everyone scream freedom of speech? When you enter a public library and cause a disturbance and are asked to quieten down or leave, do you scream about your rights? When you yell out to the judge in a court of law and are ejected or held in contempt do you complain about your freedom of speech or rights? No, these are places that have laid down certain rules for conduct and decorum and everyone in society is expected to abide by them.

Most people really appreciate the current format and moderated state of the BB and readily follow the guidelines. They regularly comment about how glad they are to find a safe place where they can find information from knowledgeable people who have "walked the walk" and "talk the talk". I would hate to see the board trivialised and turned into a comedy club and eventually have the plug pulled by NSDA for improper use of their resources.

The Moderators:

Moderator-LP Lloyd Pearson

Moderator-DB David Barton

Moderator-WV Bill Vanderlinde

This BB is *usually* the first place a newly-diagnosed patient will find, thus ridiculous posts about women's underwear and phone sex are clearly inappropriate when desperate patients are trying to locate support. The people who discover this BB (re "Googling" etc.) seriously are at the end of their rope (sometimes near suicide) and need a mature forum, rather than people who should be on an "adult private chat."

You three are doing an excellent job in providing/monitoring a constructive forum. Your explanation letter is clear, exact and fully warranted. It's unfortunate that some people in the US do not understand the First Amendment. The uninitiated use "Free Speech" as a catch-all and an excuse to abuse others. Wrong. That's not what Thomas Jefferson intended.

Thanks Moderators. Under normal circumstances (when I worked), I would say I hired the right guys and am pleased to pay your salary. However, because you all (and I) work for free on behalf of SD patients in need, I'd still say I (as a patient) hired the right guys. Am I lucky or what? All SD'ers who depend on this BB are lucky. We also need a high quality BB (not like what some tried to destroy last week). I can't imagine a better team that works for me. Thanks...David, Lloyd and Bill.

BTW, one of the great ideas posed at the Miami Symposium came from Dick Stuart (an ordained minister from New Hampshire, who has SD and serves the Northeast Region of the US as an NSDA coordinator). He brought up the subject of humor in the "Depression and Spirituality" break-out session and said they often have comedians at their support group meetings. So now (bad voice and all), I'm motivated to check out comedians in the SF Bay Area, who may want to come speak at a meeting. I have one in mind so I'll let you know how it goes!

Also, are you aware of Kathy Buckley, a deaf comedienne? She can't hear a thing and is absolutely hilarious in her stand-up act. She pokes fun of herself in a positive humorous way. I saw one of her performances on TV and am trying to get tapes to show at support group meetings. Check her out...she's very cool.

Anyway, lightness and levity and all of that are wonderful and essential (you're *preaching to the choir* as I used to get in trouble in Corporate America for being a "cut-up") but timing and setting are everything. Misplaced humor falls flat. The *stuff* on the BB could have easily been taken to a chat room, which I guess it was later (should have been sooner). And, BTW...the biggest laughs I've had in the past week were at the symposium. We laughed alot there. With my airway constriction problems lately, I could have choked to death laughing so much.

Hope all is well with your voice lately. Hope to see you in DC (which will probably not be as funny as Miami was but I can explain that off the BB).

--Lynne

Sounds like we are on about the same page. You may consider dropping the occasional off color joke in one of your posts. I've found it to be very therapeutic :-)

Remember a couple of years ago when we were talking, on this BB, about the positive effects of yellow banana peppers (pepperoncini) on our vocal cords and I interjected the *negative* effects on our digestive tracts? You were on that thread. I'm sure you remember that it got a little out of hand at that point ("bathroom humor") and we all got deleted. Pretty funny when you think of it, but that thread did take on a life of its own, apart from SD, similar to the one this past week.

Hope to meet you in person in DC (I'm going to harass you until you tell me to stop). Laughing and hugging in person is my favorite thing.

--Lynne

I should have known my buddy from down under would be attracted to any thread dealing with humor/silliness....like a moth to a flame. Nice to "hear" from you.