Given the massive soup of social-web behavior we are all swimming in, it’s not uncommon for someone’s idea of openness to strike other users as “over-sharing.” But many observers (including me) seem to think that high-profile columnists Bill and Emma Keller took that principle too far in two recent pieces they wrote about Lisa Adams, who has been writing and speaking very publicly about her life with cancer via Twitter and her other social-media feeds.
In a nutshell, both Kellers seem to be arguing that it’s not just over-sharing but unseemly in some way for Adams to share as much as she does — but as more than one person has pointed out in response to the two pieces, anyone who doesn’t want to be exposed to Adams’ point of view doesn’t have to be. And for many who are dealing with cancer, there’s a strong argument to be made that her openness about the topic is a positive thing if it encourages others.
Even more presumptuous than telling someone how to live is telling someone how to die.
— Michele (@inthefade) January 13, 2014
Is tweeting a terminal illness unethical?
The saga began with a piece Emma Keller wrote for The Guardian‘s Comment is Free platform, under the headline: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” The piece has since been removed by the Guardian — which initially posted a statement that the article contravened its guidelines, and then replaced that with a notice that the matter was “under investigation” — but a cached version is available via the Web Archive.
Among other things, Keller criticized Adams for tweeting so much about herself without mentioning what her husband and family were going through, and also seemed critical of her for trying to portray herself in a certain light via her choice of tweets. But in many ways she seemed to be be talking as much about herself and her compulsion to read about the struggle as she was about Adams:
“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?”
Keller’s piece appears to have been removed in part because she exchanged Twitter messages and emails with Adams, but didn’t give the subject of her piece any notice that these comments would appear in public (the first notice on the deleted article said that it had been removed after a discussion with Adams). In an update before it was deleted, Keller said that she wished she had told Adams that she was planning to write about it before she did so.
Free advice for @emmagkeller: Never a good idea to skirt ethical guidelines when looking down your nose at someone.
— Seth Mnookin (@sethmnookin) January 13, 2014
Too vocal, and “raising false hopes”
On Monday, Keller’s husband Bill — a former executive editor for the New York Times who now writes a regular column — also wrote about Adams and her struggle with cancer, and appeared to agree with his wife that Adams’s approach was too vocal. In addition, he argued that as a result of her high profile activity on various social networks, she had effectively become a kind of poster child for an approach to cancer that he believes is unwise:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.”
In a column she wrote about the issue, New York Times public editor Margaret Sullivan quoted an email response from Keller in which the NYT columnist defended his approach, and said he didn’t mean to “slam” Adams or her choices, even though that was what many readers took from his piece.
@nytkeller The main thing is that I am alive. Do not write me off and make statements about how my life ends TIL IT DOES, SIR.
— Lisa Bonchek Adams (@AdamsLisa) January 13, 2014
A failure to understand the subject
As sociologist Zeynep Tufekci pointed out in a piece she wrote at Medium, part of the problem with both Keller columns was that they completely failed to take part in any of the conversation going on in social media about the issue, either before or after they were published — which compounded the errors they made in their assessment of Adams’ behavior.
Emma Keller, she noted, specifically asked people on Twitter for their thoughts about Adams and the topic of tweeting about cancer, but then didn’t respond to any of the discussion that she triggered by doing so. As Tufekci also pointed out, one of the things that irritated many of those who read both columns was the sense that both Kellers were somehow standing in judgement of someone whose behavior they didn’t really understand:
“Good journalists know that to understand a community, you have to spend time in it and embedded within it, not just read transcripts of snippets from a town-hall meeting. Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It’s a lively conversation, a community, an interaction.”
One of the best things about social media is that it allow us to hear directly from those involved in something, rather than getting the information second or third-hand. As Tufekci put it: “Social media has helped move us to a world in which people are no longer passive, silent subjects of journalists… we can no longer speak of people at them, without them talking back of their own experience, and articulating their own narrative in their own terms.” Which is exactly what Lisa Adams has been doing, and will hopefully continue to do.
Post and thumbnail photos courtesy of Shutterstock / mangostock