In Memoriam
Comments
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I'm an opt-out person, like Hydranne, and not concerned about privacy issues on BCO. All my posts show this. However, concerned individuals came in and and formed a majority on Hydranne's thread and hence the Mods' decision. As to moving the thread to the stage 4 section, I'd say only after all members have been made aware they may have to make changes to their personal settings.
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kayb, I agree with what you've said. You haven't read anything wrong at all and I've certainly seen no evidence whatsoever of you bullying. As to why the nastiness, unfortunately when people come in without knowing whats gone on before, then push their opinions it's inevitable some people will stand up to that. When someone DARES to disagree with them, they cant help but devolve into a barrage of condescension, various forms of bullying, sarcasm and small talk. Every forum has them. Sadly. Thanks for your thoughtful posts like on obits etc. I absolutely agree they are grey areas.
I think it's interesting that you assume that thousands agree with you just because they haven't posted on this.
Exactly. More presumption and self back patting.
"Hydranne, ask the Mods to delete all your posts before you go."
I am utterly appalled at this vicious disgusting comment. Hydranne if you are looking at this, I know I come from the complete opposite stand to you and you barely acknowledged me, BUT this crosses the line and I'm speaking in your defense here. I hope you don't go. In support of you this is one of the cruelest most reprehensible things I've seen at BCO.
There's always going to be minorities and majorities. This shouldn't be a numbers game. It should be about respecting everybody. It's presumption to toss around figures that are pulled out of our own thinking. Have a look in the members list, for example, count the NUMEROUS accounts with ZERO posts. This board has many spammers join it and no doubt lurkers of the base sort and who knows what else. Assuming the Mods haven't weeded these out yet, will still be there along with the zero posters fraternity from long ago.
NONE of you know how many people value their privacy, to what degree they do, or what measures they've taken to do so. Nobody knows how many people are frightened to speak up on certain issues INCLUDING their passing or privacy. When you get bullies stomping all over the place, how much more so. Privacy does have a part to play in this and it needed addressing so I don't believe it "took over" hydrannes thread, which she also spoke about. This is NOT a storm in a teacup, its about respecting everyones right to how they want their own information dealt with along with their views in life. To one degree or another we all appreciate our privacy in certain areas and our passing is part of that.
To presume EVERYONE here "tells all" simply shows a lack of thought. That's why BCO in their policies have warned people not to divulge certain things - so comments like " If you have said something here that you don't want public then that is on you, not the rest of us!" is twisting what this is about.
Again I say, nobody should be forced to opt in or opt out of anything - By default people should be consulted first. How that is effectively instantiated remains to be seen.
Edited: to fix an error0 -
what I would say to all the non stage 4 members on this thread is "don't borrow worry". Be thankful you don't have to plan on being an angel. Hopefully you wont. Leave the thread to those that will most likely be on the list. Don't borrow worry
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Mab60, I don't think you are taking into consideration what this whole thing is about. It's nice that you say don't borrow worry, but it's about belief systems and peoples right to those, like some of us don't believe we will ever become angels and nor do we want to be included on a list without our consent. It's important to those who have taken this stand. With this crazy disease none of us know which way the biscuit will crumble. Anyone of us could become stage 4 years out or in a blink. For that matter we never know when our next breath is our last. For people who don't want to prepare that's up to them, but some of us do.
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Oh dear God, save me from these simpletons!
I never said EVERYONE tells all. It was others that said people post personal things. I didn't say a word about it except to say if you are worried about privacy don't post in a public forum. Yet again, assigning wrong information to blame me. You even say that bco warns about putting private information online here so what is your point???????
I am not patting myself on my back, but sitting here stunned that the immaturity continues. For God's sake let it go!! I said I'd keep defending myself, so I kind of have to keep responding to the childish posts.
As for me "pushing my opinions" it's EXACTLY what you are doing!!! How ignorant is that? (Please read the dictionary definition of that word before you jump down my throat. I use it in the real sense.)
Out of 178,000 members I'm pretty sure there's at least a thousand - two thousand (?) that are fake or just dummy accounts. That still leaves at least 175,000 and more that are active members. Oh, but some of them have died, check out the Angels (not angles) thread, or the In Memorium thread to see them.
Many times members leave, sometimes for emotional reasons and sometimes because they want to move on. It's not unusual and is certainly not the death of bco.org.
Read my posts. Twice if you have to. Have someone read them to you!! Twisting my words, over and over and now using the term "bullying" and turning it against me. Shame on you!
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Lets see how low you go.
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I am sad that Hydranne felt she had to leave. I don't object to another thread if a person wants to avoid being listed with the angels. Mods, I thank you for trying to make a good compromise. This did not need to devolve as it did. I also do not think it is only for stage 4. Family and earlier stages should be welcome too. This is one of those things where you can't satisfy everyone all the time. Whole thing makes me sad.
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Barbe, when you start your post with such an insult, you lose your credibility. I know your are exacerbated, and you are being defensive. Maybe instead, just apologize for something that maybe came out wrong (you did say Hydranne should ask to have her posts deleted) instead off calling everybody names. You totally lost me when you did that.
Stefani
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Stefani, you are right! I do apologize. My back has been pushed to the wall all day by my words being twisted and turned against me. Thank you for being do diplomatic in your post. I appreciate and again apologize.
Now, can this be the end of this thread? It's this thread that I was posting about, not another thread.
Edited to add: I didn't say hydranne SHOULD have her posts deleted, I suggested it as a option to clear her mind about privacy.
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ok Barbe. Perhaps it wasn't a fair suggestion for hydranne. That being said, I do think it's time for everyone to take a deep breath. The mods have not chimed in..staying out of it, I guess.
I like the alternate in Memorium, however I do not like the formal opting in and out part. Those of us with a preference could make that clear to some of our fellow sisters. Those of us with no preference, will be listed by our fellow sisters, as they see fit, on one or inboth places. Those who arent even aware of the existences of the threads (i.e. Friends of bco sisters), well in that case i truly believe ignorance is bliss, especially, and PleASE PARDON my bluntness, especially when you are already gone.
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Let me just be clear. Who are you apologizing to. All of us or some of us? I certainly respect apologies and forgive but I cannot see anyone who has pushed your back against the wall. You have done that yourself. No one has twisted your words. You've lashed out and flown off the handle without a cause, to those who dare to disagree with you and I simply called you on it how it was.
Initially I asked the Mods to move these posts, because I thought it disrespectful for what they put in place - but nothing has happened. Since kayb mentioned about others perhaps needing to have their say I thought hydrannes thread would be an ideal place rather than here. I guess since this thread is in it's 3rd page and hydrannes is gone, the Mods could always make a new one when this one comes to a conclusion - or perhaps they could rename it.Those of us with no preference, will be listed by our fellow sisters, as they see fit, on one or inboth places.
I disagree with this. Some people clearly stated (in hydrannes thread) they did not want anyone adding them to a list without permission and would be offended at that (for varied reasons). I believe by instantiating an opt in to either of the two threads it safeguards those who don't, by default. I think it is simple and caters for all BUT the catch is how to let people know this in a sensitive way.
Edited for clarity (in italics)
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Just a thought, unless you have made arrangements ahead of time; no one on BCO will even KNOW that you have died. For instance, I have written down instructions for my DH on how to log on the BCO and which thread to contact (my 'home' group) in the event of my passing, and I also have asked my sister to call a BCO friend (whom she has met personally) so that she could put a notice on BCO (as husbands don't always read or follow instructions
). I have no problem with being memorialized in any way nor with having a link to my obituary; but if I did, I would certainly make that clear as part of the instructions to my next-of-kin and my BCO contact.0 -
In regards to privacy, the opt in option-only might prove to be too cold and rigid, and possibly the gradual demise of this board. When a member becomes facebook friend with another member they potentially lose their anonymity on BCO. I'm not saying it is right or wrong but this is how it often is, here or elsewhere. If I dropped dead tomorrow no one will know because I'm not connected to another member in real life.
Will mods be monitoring every single post to ensure no one reveals another member's identity? How much effort would that require?
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Those of us with no preference, will be listed by our fellow sisters, as they see fit, on one or inboth places
Well, this is just similar to what we have now, except with the additional thread. It was just a suggestion, if no changes end up being made due to the sensitive nature of the opt in/out issue, it's kind off the default. Just a suggestion, my opinion, for the mods to consider. You do not have to agree, and I fully expect there to be differing points of view. I wasn't intending a debate.Again, this was just MY opinion that I was throwing out there. Frankly, at this point, I really don't care anymore anyway.
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Stefajoy, sometimes I put in "I respectfully disagree" Maybe I should have put that this time. Anyway I hope you know my intent now.
Because hydrannes thread has gone there seems to be lots of misunderstanding about the 3rd option. No time now, but I'm going to address it.
Edited to add, FWIW arguments and debates are pointless. I try and discuss matters.0 -
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It would be helpful if people could read through those to get the gist of how things developed. Page 5 would be helpful too as that was where people agreed with the Mods final thoughts. I have the html file for my personal use so I won't post what's on it without BCO's permission. If you don't come up with it I'll PM the Mods.0
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Page 5 isn't cached.
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Yes, I think I've had enough of this conversation for awhile, myself. I adamantly don't agree with the new rule of "opting in", but I'm not going to spend another breath debating the insanity of applying it.
In reality....it's not like strangers randomly add people's names to ANY "list" or thread to acknowledge the loss of another member. It seems to be done by someone closely connected to whoever has passed, and always in the spirit of remembrance and loss, to reach out and connect/support with other members in grief, not for any other reason...... I just can't find fault with that.
If the "wording" of how someone expresses their loss of "you" is that important to someone, as opposed to accepting the "intent", I just cannot grasp the concept. I will just have to agree to disagree with any who view it differently.
Unless the Mods somehow monitor these type of messages, I think/hope people will still be sharing and acknowledging the passing of someone in the bco community. I think that is an important part of the grieving process for all of us. It would take a special kind of "mindset" to block, object to, or delete that kind of post, because no one knew to "opt in", or check someone's bio ....again....imho.
If we can't agree to disagree, we should at least be able to agree to be kind to each other.
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We are pausing this thread and conversation for a few days to discuss all that you have shared, and try to find a solution that is satisfactory. Thank you, and please private message us with additional suggestions, if you have them.
Update 11/4: We have unlocked this thread and invite courteous discussion to continue, if you feel the need to do so. Mods have decided to rename the Angels thread to In Memoriam List from the BCO Community and are no longer considering the opt in/out idea.
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Thankyou Mods for inviting further respectful discussion.
Im playing catch-up. Needless to say at this point Page5 is probably not necessary.
I do want to comment further but no time right now.0 -
Thank you for taking out the option. I agree that it would freak out newbies especially.
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Both good decisions IMO.
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I am fine with the changes now in place. Thanks mods!
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I agree... Thank you for rethinking the opt in scenario. Renaming the memoriam thread hopefully resolves the wording issue, without lessening the intent.
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Thank you, Mods, for all you do
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In Memoriam may works perfectly for those who do want our BCO sisters notified of their passing, but do not personally believe in Angels. I kind of giggled to myself...would my family consider me an Angel? I have tried heard to reach that elevated plane because I do believe in Angels. I also believe that others have much different beliefs that may not be comfortable. As to the privacy concerns, I may have been mistaken to sign my name, but many others know I have Stage 4 cancer as I have posted freely on FB for increased funding for the Cure. Brenda E
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Thank you Mods for a thoughtful resolution for a difficult topic
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Hi Mods, I'm sorry but this decision is awful. First though, regarding thread titles, I respected your decision and had quite frankly left off that issue long ago.
You haven't done away with the opt in/out. For those who (for whatever reason) don't want to be added to a list, it's back to them being opted in by default unless they explicitly opt out in their profiles. Here's the problem:
- There's no prominent notification whatsoever telling everybody that they must opt-out if they don't want someone to add them to a memorial list if they die.
- Unless there's been an update the only notice I've found is buried in that one thread, which many people may not see for some time - or at all, thus a person may not know they've been included on a list and that there was an optout. Ignorance is not bliss if left behind loved ones find out later and are unhappy.
- I do agree that adopting an opt-in or out policy, no matter who it's applied to is likely to be seen as insensitive, like .... "if you wish to be included on a memorial list when you die, opt in here" or " if you don't wish to be added to a memorial list when you die, opt out here".... if the former is "insanity" then so is the latter. If being included in a memorial list isn't mandatory, but an optional feature - shouldn't people OWN the responsibility to do what it takes to be included in a feature they want to be part of? Shouldn't it be up to them to affirm their choice however that is instituted? It's those who want to remain private about this issue who should be left alone, respected and not be held accountable to find an awful opt-out option.
Mods, as you are wanting to accommodate everyone I'd like to I ask these questions:
- should this decision be made according to a sudden influx of activity favoring one position or should we remember also those who've posted before saying they don't want to be added to a list?
- should it be made on an either/or basis or is it possible to accommodate all?
- should it be made on a numbers basis and that those who are perceived as minorities have less rights?
If stats come in to this, then I seriously doubt that people concerned about privacy relative to health issues are an "exception" - much less to the extent of being a 1% minority. A quick search for stats showed a number of Pew Research Center links. I looked at "The State of privacy in America" (For those interested just punch that title into your search engine) which included a survey done from 2014. Factor in, these figures are low compared to places like Europe who tend to have more strict views on privacy.
About 1/2 way down the page a chart named "Social Security numbers, health info and phone conversations among the most sensitive data" went on to list " % of adults who report varying levels of sensitivity about the following kinds of info". There's 16 entries and second was "State of your health and the medications you take" saying "55% are "very sensitive" 26% "somewhat sensitive" 12% "not too sensitive" 5% "not at all sensitive".
According to this research taking all things into account, the overall trend is that a high percentage of people are more concerned about controlling their online information.
"Some 74% say it is “very important" to them that they be in control of who can get information about them, and 65% say it is “very important" to them to control what information is collected about them. Personal control matters a lot to people....."
I fail to see how BCO members can be so uniquely different to all other people with health issues where such a minute group of us care about how our personal information is handled.
Please reconsider this.
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I can see that the Mods have realised what a massive communications exercise it would be to explain to the community that they must opt in if they want to be included on the list. And also thought it would be an administrative nightmare to check who opted out/in.
I have noticed from topics that I post on a death is reported within the post by a member who knows the deceased or by a relative keen to inform people who have formed a close bond over, sometimes, years. Opting in or out in this case seems irrelevant. It's just like friends telling friends someone they know has died. We all do this from time to time in real life. So if we have an onerous system on being listed on one thread, news of a member's demise will just appear on the thread where the person hung out. Who could object to that or even want to regulate such an action?
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