An open letter to the Cancer Survivors Network

K_ann1015 said:

this is not just about the Marshalls...
again---very wel said BmSky!
I did not always agree with the Marshalls - but have to say that I always respected their commitment, care & genuine humane concern for any family or person going thru EC! I too was shocked at how much was deleted from not only the Marshalls postings---but what was in own own private (I guess not so private) emails!

So ---info that I could share with family members is no longer accessible to me-- this does not punish the Marhalls as much as it punishes the innocent that will not benefit form their experience. Yes---I know that the Marshalls can be strong in their opinions---but I think that is out weighed by the benefit. I have felt that they have been harsh to some, but even that does not warrant this total banishment!

I agree--to post here we all need to be respectful, polite & caring.

SO---can we move on? and do that? care for each other---share with each other--make a difference?

Ban me- I may offend someone! But I am not as committed as the Marshalls & don't post as much--so I am not offending anyone---but then I am not BENEFITING anyone either!

We can not reward apathy here---- As a family member of 2 who have DIED of this disease, I can say---that hurt feelings (over a post(s) does not out weigh the BENEFIT of other posts that lead someone to a successful treatment or some kind of HOPE for a cure--even if temporary.

I think only someone that has experienced this knows what I am talking about.

BobHaze said:

Arrogance
I think that what galls me the most – well, the 2 things – are (1) that the rumored complaints from (apparently) 1 person can outweigh the outpouring of support from so many, and (2) that the moderator(s) can be so arrogant as to make a decision like this, of such obvious consequence, and not even deign to respond to our outcries. CSN is an American Cancer Society site that purports to provide a forum for we survivors and caregivers to, “…find and communicate with others who share your interests and experiences.” In my opinion, no one communicates his experiences with others more or better than William Marshall.

The About the American Cancer Society Cancer Survivors Network page says, “The purpose of the Cancer Survivors Network is peer support. Site content is contributed by its members. Their contributions reflect their own personal views, feelings, and experiences.” If that’s true, what exactly is the problem here? Since, as BMGky pointed out, nothing William said falls under the definition of proselytizing, then his postings appear to be nothing more than his personal views, feelings and experiences, which is consistent with the About the ACS page.

OK, according to the CSN’s Terms and Conditions, “No User shall use the Service to proselytize.” But the very next sentence says, “The religious beliefs of all faiths are to be respected. The spiritual beliefs of all Members are to be respected regardless of whether they are in accordance with the beliefs of any religious group or teachings of other Members.” Once again, if that’s true, then what exactly was so offensive in William’s posts that we children aren’t allowed to see them anymore?

But what about the arrogance of an organization that receives such a large volume of impassioned but reasoned and well articulated objection to its decision, and can’t even be bothered to respond and explain itself? This isn’t just a political blog where people post their opinions. As several others have said, this is a forum where many frightened and desperate people seek support, advice and information, and whether or not we all liked or agreed with everything William and Loretta said, there can be no doubt that they offered a ton of well researched advice and information.

I remember a post several months ago by a young woman who asked people to donate to a cancer fundraiser she was involved in. That post was deleted by the moderator, who posted his or her reason for deleting it, and I understood the reason entirely, as did the poster. So why can’t the person who made this much more consequential decision and global deletion of so much information take a few minutes to explain it to us? I confess I’ve lost a lot of respect for the ACS and the people to whom it gives the responsibility to moderate these boards. Shame on any person or organization that can have such influence and impact on so many vulnerable people, but can’t be bothered to explain itself. Shame.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

BobHaze said:

Arrogance
I think that what galls me the most – well, the 2 things – are (1) that the rumored complaints from (apparently) 1 person can outweigh the outpouring of support from so many, and (2) that the moderator(s) can be so arrogant as to make a decision like this, of such obvious consequence, and not even deign to respond to our outcries. CSN is an American Cancer Society site that purports to provide a forum for we survivors and caregivers to, “…find and communicate with others who share your interests and experiences.” In my opinion, no one communicates his experiences with others more or better than William Marshall.

The About the American Cancer Society Cancer Survivors Network page says, “The purpose of the Cancer Survivors Network is peer support. Site content is contributed by its members. Their contributions reflect their own personal views, feelings, and experiences.” If that’s true, what exactly is the problem here? Since, as BMGky pointed out, nothing William said falls under the definition of proselytizing, then his postings appear to be nothing more than his personal views, feelings and experiences, which is consistent with the About the ACS page.

OK, according to the CSN’s Terms and Conditions, “No User shall use the Service to proselytize.” But the very next sentence says, “The religious beliefs of all faiths are to be respected. The spiritual beliefs of all Members are to be respected regardless of whether they are in accordance with the beliefs of any religious group or teachings of other Members.” Once again, if that’s true, then what exactly was so offensive in William’s posts that we children aren’t allowed to see them anymore?

But what about the arrogance of an organization that receives such a large volume of impassioned but reasoned and well articulated objection to its decision, and can’t even be bothered to respond and explain itself? This isn’t just a political blog where people post their opinions. As several others have said, this is a forum where many frightened and desperate people seek support, advice and information, and whether or not we all liked or agreed with everything William and Loretta said, there can be no doubt that they offered a ton of well researched advice and information.

I remember a post several months ago by a young woman who asked people to donate to a cancer fundraiser she was involved in. That post was deleted by the moderator, who posted his or her reason for deleting it, and I understood the reason entirely, as did the poster. So why can’t the person who made this much more consequential decision and global deletion of so much information take a few minutes to explain it to us? I confess I’ve lost a lot of respect for the ACS and the people to whom it gives the responsibility to moderate these boards. Shame on any person or organization that can have such influence and impact on so many vulnerable people, but can’t be bothered to explain itself. Shame.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11