Locked Up - Free Speech Topic

[Terry]

They hardly EVER lock topics here unless it hurts someones feelings. If you think locking a post maybe 2 or 3 times a year is bad I can tell you about this "healthboard" place that I was kicked off of for trying to help someone and give them the name of this board.

Big deal it's locked. I don't know what it was about and am curious but I'll live without more drama in my life.

The moderators here certainly do not "abuse their power". Let's please move on to more important issues like pooping and farting;) and isn't my granddaughter cute?

[beccab1]

Terry, your granddaughter is adorable!

[NWgirl]

Grandaughter - WAY CUTE!!!!!

[Terry]

To be completely fair, the original post by Gaelen on "When doctors disagree" was changed so not everyone is seeing what caused this. cptmac was basicly embarrassed by the original post. I know this because I reported it and then it was changed.

I think perhaps this one should also be locked.

[cptmac]

1st, I don't consider Gaelen and I to be enemies, nor do I mean to attack her. I consider myself to be friends with everyone on this board. I even encourage people to talk to Gaelen and others to get different opinions. Although I do warn people that Gaelen can come off a bit harsh, however she has access to a great amount of information and is quite an authority on this board. I would certainly never want her to stop posting. I have no idea what she thinks of me. She’s never said. I don’t know how often she recommends people she’s posting to, to seek other opinions from people on this board. However, when she or anyone states I shouldn’t post, I feel they are also stating that others that have similar info should not post, and I feel I have every right to state my opinion on that and to go off topic from the original posters comments. I feel it’s important, because some people are intimidated to post. I find that to be unfortunate.

2nd, I’ve encouraged others on this board that have disagreed with me to keep posting. I think it’s great for everyone to seek other opinions. I applaud the efforts of people who correct my misinformation. I applauded Gaelen for correcting that info, because I didn’t have time to do so. My only issue is with anyone trying to silence anyone else, thus I feel the need to speak up for all of us.

Sometimes posters have wanted more facts and figures and I think that increased the knowledge for all of us and was better for us all. I’ve done this even when I thought some of their arguments were quite silly. For example, when one poster tried to discredit me when I stated I didn’t have any symptoms..... even more so when they stated that my initial GI doc couldn’t have been that drastic when giving me the news. I thought it was silly, because that person isn’t me, wasn’t there, and I tape record all of my medical conversations.... all of my docs were surprised that this was even caught before it was wayyy too late. But the point is, I never discouraged this person from posting even though they were trying to discredit my personal experience. Reminds me of a time when my boss was trying to tell my that I was not half Japanese, I was Puerto Rican. Hello, I think I would know my own nationality better than him. I was glad to provide more info to better explain my situation. Some people remember my info, and some don’t, and not everyone wants to wade through all the stuff and remember who said what, so it’s good to clarify. Sometimes, upon clarification, we’ve realized that we’re both really on the same page. Since some posters lurk or continue to follow the thread, it can be important to do it publicly.

My doc is doing a clinical trial on vaccines, and when a poster stated if it was true it would be listed somewhere and they couldn’t find it. Well, this trial is taking place. I’ve met patients on the trial. I don’t know why it wasn’t posted, perhaps a computer glitch. I just looked and a similar trial with my doc is now posted. It’s a Stage I clinical trial for a vaccine.

If anything I encourage everyone on here to have the strength to post their opinion or story on here, or in the media, to get the word out about colon cancer. Even Sharon Osborne stated it was a disease no one wanted to talk about and when they do, it’s not correct. But as people in the PR biz say, any PR is good PR, so keep on posting.

3rd it is due to this right that I have been able to help bring change to America. I’ve done this through words, and not sticks and stones. Therefore, I don’t see any harm in reopening a locked or a formerly taboo topic. IMHO, in order to form a more perfect union, we need to be able to communicate. Not being able to communicate helps to create ignorance, and nothing good can come from it. Back in the day, some of our ancestors were denied some of their rights. Over 20 years ago, I joined a group to right some of these wrongs, through a media group for Asian Americans. Through our stories, and through our voices, we brought to light our ancestors who were denied their diploma. We’ve slowly, but surely, helped right that wrong. UCLA just awarded diplomas in May..... It’s 2010 folks.... Many times our voices were hushed. I’m thankful to help bring this change forward while some of these folks are still alive. I’m thankful someone in authority could see this was an injustice that needed to be fixed. It’s unfortunate that someone over 20 years ago couldn’t figure that out, but thank goodness we didn’t have to wait another 20 years to right a wrong, simply because we were asked not to communicate.

I helped to bring Mary Price-Walls story to light. I’ll admit, I did get some of the facts wrong in this story, because she is very humble. However, my intent was to correct a wrong. We had to get the info from her son and through old media that was quite biased. However, we were lucky to get any info at all. Finally she was given an honorary degree. It’s now making the national news circuit. Perhaps these are drastic examples, but I’m thrilled that someone kept going to these prestigious establishments to right a wrong. IMHO it will take longer for us to move forward, if we keep silent, or bully people into being silenced.

So you can see my passion for free speech. We may disagree, we may need to correct, and by keeping the lines of communication open in one form or another, my hope is to make the world a better place. I never had the intent of attacking anyone, but to encourage everyone as a whole to speak up. More importantly, for everyone to feel comfortable to bring up topics, any topic, and to know that we love all who come here.

So keep on posting posters and please don't let any poster or posters intimidate you into not coming here for great info.

Thank you for listening...

[carolyn5]

Carolyn...to answer you so everyone can see I locked the topic, only moderators can lock topics and we do that SOMETIMES and not even often to stop onflow of comments. And I know so many want to jump on the band wagon even if to condemn what people were doing but at some point it has to stop before people get hurt and people/person were hurt and it was to late.

I was accused of blaming the person who started the topic for being totaly at blame and that is far from the truth. I did not and still do not know who all was involved, you know who you are. And my biggest point was that some of you hurt someone whether you meant to or not.

We should really be here to support each other and build eachother up.

Liz, thank you. My mistake.

Im not sure how to quote from the previous thread to here- any way. Hannah, my apologies. From the tone of your previous postings where you spoke of lawsuits, and what moderators can and cant do, I mistook you for a moderator on this board. So I do appologize for my mistake.

Regardless, reiterating what Liz said so eloquently in her original post, we are all here because of cancer. We've all been through hell in some way or another, and we are ALL hurting in some way. Please try to remember when you post something potentially hurtful (this goes for me as well)- it could be the "straw that breaks the camels back" for someone- Perhaps causing them to lose all hope or give up their fight... Could you live with that? Im pretty sure I couldnt.
We all have our fragile moments.

[carolyn5]

And yes Terry! Your grandbaby is beautiful!

[lydia123]

Yes Terry -

We should lock this one, and open a follow-up one where we stick to important things like those cute little pig-tails.

That is one cute little grand daughter.

[Gaelen]

To be completely fair, the original post by Gaelen on "When doctors disagree" was changed so not everyone is seeing what caused this. cptmac was basicly embarrassed by the original post. I know this because I reported it and then it was changed.

underline added by Gaelen

Okay - since the moderators have elected to leave this all in public view, let's get this timeline straight so that everyone in the cheap seats can follow the action. And let's use the names in our out-loud voices, so we can all see how this kind of situation shakes out all too often on this forum. Popcorn, anyone? Oops - maybe not on this board!

- Cptmac posted an article as a reference which contained some misconceptions and errors.
- I replied, pointing out the errors in the referenced article, and suggesting that we all be careful not to cite as references stuff which is incorrect. Note - I corrected errors in the article. I did not at any time attack cptmac for posting it, try to 'silence' her, or infringe on her interpretation of the 'rights of free speech' - which btw don't apply to posters on private forums like Colon Club.
- Terry says she complained about my post.
- A moderator edited my post without leaving any notice that the post had been edited - I didn't know it had been changed until Terry mentioned that in this thread.
- Cptmac then created a new thread in which she personally attacked me - not my ideas, but me.
- A few other posters decided to pile on - missjv, Terry, CRGuy all got a couple shots in.
- That thread, with negative comments aimed not at my ideas, but directly AT ME, is live - although locked - for everyone to read.
- The personal attacks extended into another thread when boweltumor criticized me for a response I made to Brownbagger's news about his lung met and question about future lung capacity. That post is also still live, unedited. About a page later is a vague 'oh, I didn't mean to offend' comment. Name me directly to put me down - but don't apologize to me directly?

I disagree with ideas - and my post is edited because someone is embarrassed that I disagreed.
Other posters attack individual posters - repeatedly and often - and their posts usually remain live, unedited.
Threads are started here to attack other posters - and those threads are allowed to remain on the board.
This creates an atmosphere not of support but of board bullying.

I'm an admin on two other boards, and I'm all about letting a community manage its own standards - when they can be mature enough to do that. I contacted the admins and moderators and said, ok, when is enough going to be enough? Liz responded, and I thanked her but clearly it wasn't enough of a response because those of you in this thread clearly don't get how inappopriate your behavior has become. The personal attack behavior continues, and you people are even arguing with the moderator. Where personal behavior standards are concerned, this community has none...or the standards for interpersonal respect are just abysmally low. And that situation makes it not a very supportive place if for whatever reason you ever happen to disagree with one of the board bullies.

Board bullies attack people, rather than disagree with ideas. I have never, ever done that, so no, despite how I've been characterized by some of the people in this thread, I don't qualify for that distinction. If I named you in this post, please don't delude yourself that your comments about me weren't attacks. None of them would survive the standards of other message boards. And if you posted them to the ACOR list, or MyCRCconnections, or several other sites I can think of, you wouldn't be posting any more or you'd be on moderation - because personal attacks in any form, even sideways innuendo, are just not permitted. And nobody is allowed to post nonsense like I am who I am, take me or leave me, or I won't be silenced as a 'reason' for what is basically, essentially, bad behavior.

People here are allowed to publicly attack other posters, and it's been going on for a long time...since I've been reading this board in 2007. There isn't only one culprit; there are many. In fact, the freedom to attack someone and excuse it with 'it's who I am' or a plea for kum-ba-yah moment and 'let's all play nice now' from the people who instigated the personal attack IS the community standard.

Every single one of us should look in the mirror, and ask ourselves if we'd behave the same way in person, if we're proud of our actions. I didn't participate in personal attacks, so yeah, I am proud of my actions. Are you?

[BrownBagger]

The only other board I'm currently active on is one devoted to road cycling. We're all about snark and harassing innocent newbs and trying to show how clever we are at others' expense--somehow managing to provide assistance and useful information in the process. That's just the way the place is run and those who don't like it quickly disappear. I don't play that game particularly well, but I do play it and it is entertaining. We're all big boys and girls and road cycling is largely about appearance, performance and competition. So it works.

I'm also a (lapsed) moderator on a wood-energy board where I was always very careful to see that things didn't get out of hand--either on the personal or on the commercial end. I know from being a magazine editor that the moderator/site admin's job is to see that the intent and mission of the board is maintained. Since the board features advertising (which I got a commission for selling) and provides how-to information for people with wood-heating systems, we liked keep things interesting, informative and friendly--but tight. Everybody got a fair shake when I was running things, but attempts to drive the thing off the rails or violate the basic tenets of membership were not tolerated for long. Post a picture of a sexy woman for a cheap laugh, and I'm taking it down. Do it again and I'm taking you down.

This board is unique. No advertising is sold, and most members are to varying degrees, fighting for their lives. This is a "support" group--not some opportunity to sell a product or build your reputation as a pretty sharp cookie or clever guy. From what I can see, the mods do what they feel is necessary to maintain the spirit and mission of this board--as they understand and define it. It's not always fair and it may not always be right, but that's their job, and I respect that. OTOH, nothing wrong, in my opinion, with calling them out when you disagree or have an issue.They ought to be able to defend their actions.

[PGLGreg]

Threads are started here to attack other posters - and those threads are allowed to remain on the board.
This creates an atmosphere not of support but of board bullying.

So you are asking for more censorship, is that right?

[Terry]

To be completely fair, the original post by Gaelen on "When doctors disagree" was changed so not everyone is seeing what caused this. cptmac was basicly embarrassed by the original post. I know this because I reported it and then it was changed.

I wouldn't exactly call the above, that I posted criticizing you Gaelen. And the reason I reported it was because what you said to cptmac and how you said it should have been in a pm. It was basicly you doing to her what you are saying shouldn't be done to you.

I'm a moderator on another site also and I pretty much let anything fly as long as it's not "personally" attacking another person. What I mean by that is some people will say things like your probably an a'hole with your family or something on that order. I see very little attacks on here, usually just disagreements. I've been around for about 2 yrs now, so maybe before that I don't know. But I do know your the only one I've ever had "attack" my posts. I know I was "attacked" (and I use that loosely, wouldn't really call it attacked but for lack of another word) by you once or twice also, once when I said it was National Prayer Day and you didn't feel it was appropriate even though prayer is appropriate for some of us just like it isn't for others. Also, how many times have you posted after I said something about being "positive". You don't like positivity, fine, for others it's what gets us through. You post like your the one that's right.

Board bullies attack people, rather than disagree with ideas. I have never, ever done that, so no, despite how I've been characterized by some of the people in this thread, I don't qualify for that distinction. If I named you in this post, please don't delude yourself that your comments about me weren't attacks.I don't agree with this at all. Some people are afraid to post due to what their afraid you'll say. I think you don't realize how you come across and don't do it purposefully but even so it's taken rather harsh at times.

I don't necessarily think it was a good idea to start a thread about a particular person but I kind of understand why it was started.

Just saying!

[Molly]

All, I apologize that I have not been involved in this thread. I, myself, have not been on the board much as of late, except to approve and disappove spam.

Please let me start by saying that it is not our job, as moderators, to decide who is right or wrong. (Liz and ALL of our moderators, thank you for all that you are doing!)

Next, I'm going to jump in again and remind everyone that there is no free speech here. This is, as HannahW pointed out, a private message board. We moderate lightly because I believe we SHOULD be able to speak freely. (I was 23 when I was diagnosed and dammit, I was dropping F-bombs if I felt like it.) PGLGreg, I know this is one of your favorite topics, but at the end of the day, the moderators make the call if something is getting out of hand. I'm pretty sure that that everyone would agree that it's not often that posts are locked or removed. This will always be the case.

MissyJV, I’m sorry that you don’t post much anymore, but am glad to see you here today. I hope that you do come back…because everyone is welcome here…even the spammers…on their days off!

BetsyDogLover, you have the same rights that anyone else does here. (THanks, Jaynee and Starbuck!)

So that everyone understands, only moderators and admins can lock or delete a topic and I will take credit for locking this one...for no other reason than it’s seen it’s life. Not to worry. It will come up again in a few months and there will likely be another flare like this one. Hopefully we can all stay friends afterward.