In Memoriam
Comments
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"All right to privacy" would only include what you chose to share with others in the public forum. If you never provided your "real name" then it couldn't possibly be included in the angel list. As for posting obituaries, weren't those already published in a newspaper?? Again, another public forum.
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PM's are private as the name suggests and should never be divulged. I agree.
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Lines of shouting ultimately have zero affect. Your generic idea of privacy is woefully abysmal and condescending like your first post. You might follow your own advice FIRST before bossing people around to fit into your mold. THAT is common sense.
kayb, yes, I think the whole crux of the matter is about getting permission first and as you describe there's quite a few scenarios to consider. In the end, it's about placing each persons right to choose to remain silent, give consent, or operate in whatever level of privacy they want. As you've also noted there's more to privacy than posting on a forum. To that end and within my capability (tech-wise) I support anyone to whatever level of privacy THEY choose. I will certainly not be intimidated by people insinuating we should just throw all caution to the wind. We should think of how others feel about their own privacy first instead of putting our own desires first. I'm not questioning good intentions, but priority should be given to each persons own wishes. I believe the Mods have pretty much covered all bases with how we are to be memorialized or not, except maybe those who want to be listed somewhere but don't want to "opt-in" through their bio. That's a fair enough stand, so (FWIW) I've offered a solution to that in hydrannes thread.
It is always going to come down to respecting peoples choices. Some people don't care some do. I think catering for everyone is doable.
Traveltext and others who have noted the visibility and enforcement problem, I agree. A couple of weeks ago in Hydrannes thread the Mods did put it out there about people offering ideas. For sure it needs finetuning.0 -
Lines of upper text DID get an effect!! Tada!!
Wasn't sure if you just couldn't read what I was saying....even though that was many posts and even a page ago. Just can't let it go, eh?
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Nope. No affect on me. You just need to hear it. As for timing, I have a life outside of this forum and if I respond it's in my time not yours.0
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Thank you, Barbe, for saying what I would have said. If one is so damned concerned about their privacy, what the heck are they doing posting about their disease, their symptoms, and their family suffering in the first place?
It's a non-issue, if you ask me. This is a public forum, after all, and non-members CAN read anything that is posted on these threads. Also, I think people might know when you're about to die if they follow some of the other threads.
Tempest in a pot of tea....
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When I joined this forum there was just over 20,000 members. There are now over 178,000. And those are the ones that register. There are thousands more who just read the posts. So a handful, a dozen, maybe 100 women are worried about privacy when they DIE????? So now we ALL have to either opt in or opt out??? Are you kidding me?????????
When I suggest that if someone is so worried about privacy that they should destroy their most private moments (diary) before they die that is "telling them what to do", but if you tell us that we have to opt in or out because you said something that you don't want public we all have to bow to your demands? Sorry, it's YOU that is condescending and unreasonable. If you have said something here that you don't want public then that is on you, not the rest of us!
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Hydranne, ask the Mods to delete all your posts before you go. I'll stay here hunkered down with my own Stage 4 IDC. Saying "stay well" isn't really appropriate, is it?
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Who said she was an idiot??? I don't see that anywhere. What I saw is a handful of people trying to change the set-up of over 170,000 members for their sake. BCO works hard enough to make people happy in a very tense and emotional period of time. Asking for petty changes is just sad. If that's the biggest problem you have then you are very, very lucky. Perhaps the few who want to "opt out" could say so and leave the rest of us to enjoy our public relationship on this forum.
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I never said it was an inconvenience. I merely said it's amazing that someone can request that over 170,000 people bow to their wishes and then be upset when we don't all kow-tow to their demands. Claiming "theft of identity" is just overly dramatic and fear mongering.
When the word "condescending" was dropped earlier in this thread it put my back up. Just because I don't believe in the drama going on does not mean that I am putting anyone down. I'm merely disagreeing.
Bullies normally get their way by being intimidating. Putting down others with a differing opinion is bullying. I didn't put anyone down, I merely suggested yet another way to stay private - acknowledging their concerns. But I was pushed to the wall and now am pissed at the attitude on this thread. It scares others from posting and is yet again another form of bullying. I refuse to shrink from bullies.
I do find it amazing how twisted my words have become - the posters trying to interpret my thoughts and words are just trying to make me look like the bad guy. There are no bad guys. Just a bunch of us fighting for our lives.
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I am stunned by the conversation on this thread....truly stunned!
So, I searched for the original thread where it seems all of this "kerfuffle" seems to have started. It is a 5 page thread. The discussion seems to be largely amongst a small handful of members. I counted 10, perhaps 12 people out of the entire discussion who seem to be driven, for either what they feel are privacy or religious belief reasons, who adamantly oppose the "Angel" connotation, and the possibility of someone listing them as such, at their death. Those viewpoints seem to be deeply rooted, and they certainly have the right to hold those beliefs.
HOWEVER......is it reasonable to now expect every current and future member....we're talking THOUSANDS, truly...THOUSANDS of people, not a dozen, to choose a confusing, (at least to me), and somewhat hidden "opt in" procedure? Surely it makes more sense for a small handful of people with strong beliefs to alter their "choice" instead???? There is a true difference between "accommodating and reality".
The Mods clearly stated they did NOT want to participate in maintaining or listing of names on these type of threads, so how the heck is this supposed to be "enforced" anyways?????
Edited to add this thought.....It seems logical to me, that when you decide to join as a member of BCO, that you are in fact "opting in"....so haven't we already made that choice??? Again, it seems that it would then be an individual members responsibility to indicate otherwise.
Hydranne.....you hold strong views....some of which I support, some of which I do not. But, I hope that you do remain within BCO, as surely, you have received support here, that has meaning for you. I'm sure not all of your interaction on the threads has been one of "fighting for change", and I would hate to see you shut the door on the many positive aspects of this site.
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I completely agree with what nihahi has written...and sadly as in many areas of life the minority seems to dictate policy for the majority. This opt-out opt-in policy is another example.
Amy
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Someone is continuing to mis-read my words. Asking to be excluded off the angels list was not my point. Screwing around and twisting my words and thinking you know how I feel and trying to get people to agree with you that I am wrong is the bullying part. Please read my posts slowly. Repeat if necessary. Take the time to digest what I am really saying and not what you think I am saying. For heavens sake!!!!! This is ridiculous how long this is dragging on, but I WILL continue to defend my position and the tens of thousands of others who agree with me. I get private messages thanking me for being a voice for them as they are too afraid to post here because they don't want to be bullied.
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Holy crap!!! She wasn't TOLD to erase her presence here, it was suggested that if she is so concerned about privacy that she have the Mods erase all her posts as others have done who have left this forum. Why do you insist on mis-understanding (twisting?) my words?????????
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I do so hope that "this" is not the final version of this.....the original thread had 151 messages, a number of them from the Mods, not members, over a span of 10 months.
This thread was activated by Ruthbru's posting on Oct 29, and already has a third of that, in just a couple days, with no input by the Mods.
I have absolutely no issue with finding a way to accommodate individual preferences.
But clearly.....asking (at today's count) 178,461 members to revise their "bios" to opt in, as opposed to asking (let's stretch the numbers to account for those not even aware of the controversy) 1,000 members to opt out makes much more sense???? I have checked, and Hydranne's bio contains a statement asking not to be listed on any memorial thread. Others who feel the same should absolutely do so.
Again....in my opinion....when you sign up as a member...that IS opting in.
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I think it is simply a matter of jumping thru hoops to please the few that are this upset over being remembered as an angel. Good grief, no one is trying to be offensive, belittling, or mean by having an angel's list.....it is done out of love, respect, honor....and any other numerous GOOD things. Honestly, I cannot imagine coming into a community and stirring up this issue to the point that it already has, if it bothers you this much than maybe this particular community is not meant for you. IDK, I truly don't mean for that to come off as harsh, but I find it hurtful to those that have benefited from that list to see this going on. I maybe should just keep my mouth shut on this
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I was responding to this thread, not the "other one" as you will notice I'm not on it. So, the OP is actually the Mods! Pretty sure I was paying attention.
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I was one of the original posters supporting the concept of an alternative thread to the Angels one for those who didn't like the Angel moniker. A simple request and surely not a hard one to institute. Over time this discussion was dominated by those concerned about privacy issues, and so what could have been such a simple fix as starting a new thread has led to a new BCO policy of having members opt in via their biography page before they can be listed on either thread. I don't mind doing this, but it certainly is an imposition on members. And I'm waiting for the Mods to explain how they will let the community know of this new plan.
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If this proposed solution had been in place when I was diagnosed a year ago and looking for online support, i would have looked no further and left the site in a hurry. Pretty sure I would have found the whole idea of being required to state how I want to be memorialized when I die just a little too much... especially during the first few weeks of learning I had BC.
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Great point, Wildflower!!
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Traveltext, I don't think the new "opt in" requirement is an imposition. I think it's insensitive and creepy.
A newbie who joins this site because she has some questions about a condition that hopefully will turn out to be benign shouldn't be asked, upon joining, to state her wishes about whether and how she wants to be memorialized, should she die. That certainly would leave the wrong impression about what this board is all about, and it would leave the wrong impression about breast cancer (since the majority of us will survive our diagnoses).
For those of us with breast cancer who are already members and who hope that we have been successfully treated, being asking to go back into our profiles to state our wishes for when we die, well, that's just seems inappropriate.
If any of us should find out that we have mets, or for those who are Stage IV / metastatic now, do we really want to ask these people to go to their profiles to tell us their wishes for when they die? How insensitive and cruel.
That said, it happens that I did read many of the posts in the other threads that led to this decision by the Moderators, and I understand how and why, after months of debate, they came up with this solution. I have to admit, however, that I never understood why this was an issue that the Mods were trying to solve, since the Angels thread was not started by the Mods or BC.org and is not managed by them. It's a thread that's run by and updated by members of the board. So the members should have figured out a solution.
As I understand it, there are two issues. The first is that some people would like to be memorialized, but don't want to be on the Angels thread, because they believe that there is a religious connotation. Fair enough then, start an "In Memoriam" thread as an alternative and make sure that your friends on the board know that you want to be listed there rather than on the Angels thread. The second issue is one of privacy, since most of us don't use our real names on the board, but upon passing, many of the notices include individuals' real names and sometimes links to their obituaries. Most often, this information is provided by a family member or friend, so we can assume that the individual who passed did in fact want her identify to be revealed. But under the new system, that's not good enough anymore, and I don't understand why. Why can't someone just let their friends know whether or not they want their real name, and a link to their obit, included in any notification of their passing? Or if they want no notification at all (which I think would be unfortunate because too many women on this board 'disappear' and we have no idea whether they are okay or not), let a few friends know. Or include a line in your profile that states your wishes. There are lots of ways to make ones' wishes known.
Rather than change something that has worked for years with no complaints (until now), why not find a way to deal with the exceptions? If someone feels strongly that she doesn't want to be mentioned in the Angels thread, or if she doesn't want her real name to be released upon her passing, or if she doesn't want her passing to be mentioned at all, surely there is a way to ensure that people know that and abide by those wishes. Tell your friends. Put it in BOLD CAPITAL TYPE in one's profile.
We should have a way to accommodate these types of concerns, but changing the process for the 99% doesn't seem to be the best approach.
Edited for typo only.
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Well said, Beesie!
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When a member resigns from BCO all their posts, including threads they started, disappear. Now that Hydranne has left BCO, her thread "Opting out of being listed on the BCO angels thread" has gone offline. That thread ran for many months, was always in the Active Topics list, and it would have been great if more interested people had joined that discussion so that the Mods could have got a wider perspective on this issue.
Now we have a decision by the Mods to make a listing on either thread opt-in and there's no way for people to go back to the original thread to read about why the Mods made this decision.
And I have to add it's too bad that Hydranne was given such insensitive treatment for nothing much more than wanting an alternative thread to be be remembered on.
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I do not follow this thread. I just stumbled upon it. As a stage 4 lady I have more important things to worry about. Bump over to the inspire website. They don't have any of this disturbing nonsense.
Mary Anne
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I read and responded to Hydrannes original post. I respected and understood her concern about not wishing to be included in the angels thread. There were a few others who also felt strongly about not being named angels. They made their opinions known. Honestly, the thread and it's original intent should have stopped there. She created a space where people could opt out.
Instead it was turned into a heated discussion about privacy, which muddied the waters. A topic which I strongly believe was a spill over from the AdBrain or whatever the tracking software BCO had recently begun using.
I support Barbe and what she has been passionately and justly asserting. Personally I do not want the angels list to go away, or changed in anyway. I honor that list and am grateful that it's there. I also respect those who wish to be excluded, and feel it's on them to make it known. Hydrannes thread, maybe a little less controversial, would have been the perfect spot for it.
The privacy issue is a whole other topic and I don't think it needs to be brought into this.
As an FYI, I am certainly not looking forward to the day but I am hoping someone will remember me enough to add me to the angels list.
Noni
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hello again. I might add that this thread is a perfect example of why stage 4 should remain separated from other stages. There were recent discussions about letting non stage 4 comment on our threads. I hope y'all never find yourselves in our boat but if the chips fall for you in our direction I guarantee you would not be quibbling about this. I mean, really? Signing off this thread. Won't be back. I find it extremely insensitive
Mary Anne
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Traveltext, I'm sorry, but to say that a thread of 151 posts over a 10 month period was always on the "active list" just isn't accurate. When I looked at the thread this morning, there were extended periods of time... weeks....with no new posts. It definitely would have fallen off peoples radar. As a member of that original thread, I would like to hear your views on how/why such an "unwieldy" resolution was reached.
The message that hydranne wrote on her bio, actually asked to not be on any remembrance thread... which implies an opt out, doesn't it? This seems a sensitive, respectful way of managing a highly personal decision, for those who have individually arrived at either the need or the desire to consider such options....and there definitely SHOULD be alternative options for them.
How this became an opt in scenario for the hundreds or thousands of other members is, for me, completely bizarre. That does not imply that I don't respect the wishes of those seeking an alternative type of remembrance.
I'm sad to see that she (hydranne) has left bco, I hope she finds the type of support community that works for her. But her departure will do nothing to resolve this obviously decisive issue.
Devisive..... Not decisive.... Stupid autocorrect!
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For those interested, the first page of Hydranne's "Opting out of being listed on the BCO Angels" thread remains in Google's cache HERE
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Thanks Traveltext.....May I point out.... Even hydranne initiated the discussion as opt OUT. What the heck happened to arrive at where we are now??
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if the mods are following this thread I would recommend the in memoriam section be permanently moved to the stage 4 forums where there exists more sensitivity to the issue. After all, we are the ones most likely to become angels. I believe it would be handled differently there, non stage 4 members, I hope you never have to use it.
Mary Anne
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