I turned to BCAN to use its web site, INSPIRE. This deals more with INSPIRE than BCAN.
I agree with Diana, that the people were most helpful and courageous. The administrators and moderators at the web site were much less so.
As often happens when dealing with a potentially fatal disease, humor and comedy often surfaced in the web site discussion. I personally think that laughter and a PMA, positive mental attitude, is just as important as my visits to my doctor.
To make a long story short, certain humorous posts began to 'disappear.' Most of these post were written by the same person, let's call them X. An open and public discussion followed, and over 200 positive posts were listed compared to 3 or 6 negative ones. The word 'censorship' first appeared during this open give and take. Ideas for possible solutions were brought up. The important facts that, no one was being forced to read these posts, and that they could be deleted by a reader were brought up many times.
Teaminspire people asked for some quiet and calm so they could determine the best course to take. Many of us at the site thought that no real changes were needed, and the fact that a post could be deleted before it was opened was protection enough. This was especially true when the writers name was shown next to the post.
Finally, a post appeared that said humorous topics could be posted in an 'off topic' area of the site. I, and many others, thought this meant the end to someone being able to removing posts.
Worse yet, when an open and public discussion was attempted, those posts were removed. A private message was delivered to you stating that the only people you could post to would be the teaminspire people. The very people who were removing said posts in the first place.
Writing to Teaminspire, and BCAN- it's parent organization- yielded responses about site rules, that were vague at best, and 'one sided' at worst. Worse were the posts that received no response at all.
Once more, I will state that I agree with Diana. The people at this site, and the information, courage and emotions that they share are superb and priceless.
Some of the people running the site, however, are acting like petite dictators, worrywart parents and 'I know-whats-best-for -you' friends.
I have cancer, not a mental disorder. To assume that you know what I should see, hear and read is beyond belief. I am an older person and have seen and lived through many different things. The posts that started this whole tempest-in-a-teapot contain no words, deeds or thoughts that I haven't been bombarded with from my TV screen. I am capable of controling my own TV, thank you very much!!
None of the other sites I belong to are this heavy handed. They tend to police themselves with out resorting to outright censorship. Just because I disagree with them, none of them have suggested that I find another site where " I would be happier."
The people who use and need this site/organization get a big thumbs up.
The people who run and monitor this site/organization get a big thumbs down.
When undergoing treatment for bladder cancer, this non-profit was the only place that gave me professional and precise information about what I was going to face during my surgery, chemo and life after treatment.
The best part is I get continued support from people around the world that have experienced the same situation.
Bladder cancer is not talked about. I could not find local support. We now have a local Dallas/Ft. Worth Chapter of BCAN so others will not have to feel alone and confused about this disease or treatment.
Review from Guidestar