#Kellergate — Hashtags of the Week (HOTW): (Week of January 20, 2014)


The Beginning of Kellergate

If you were busy last week, you might have missed what has become known as “Kellergate.” It erupted with an article in the Guardian by Emma Gilbey Keller, which was shortly followed by a companion piece in the New York Times by her husband, Bill Keller. Both pieces were about about famed breast cancer blogger Lisa Adams.

Emma tweeted about her post right away, and Lisa replied quickly. As of today, there are 40 replies to that initial tweet, and it is enlightening to click through and read through the initial dialog.

Keller, Emma G. Forget funeral selfies. What are the ethics of tweeting a terminal illness? The Guardian Wednesday 8 January 2014 13.40 EST. Original link: http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics Archive link: https://web.archive.org/web/20140109033020/http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics

Bill Keller also tweeted out when he published his piece on Lisa Adams, a tweet which has 39 replies at the time of writing this, again with many upset responses.

Keller, Bill. Heroic Measures. Op-Ed. New York Times JAN. 12, 2014. http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html

What both Kellers seemed to not understand is the role of patient communities in social media, and that the breast cancer community is one of the largest, most active, and most passionate of Twitter patient communities. Both posts were perceived as an attack on Lisa (justifiably), and the community reacted. The authors, at least Emma, seemed genuinely surprised.

Now, you know something is really controversial when ‘comedians’ start to pick up on it. And then when people start to make parodies of other replies!

I’ve just come from a phenomenal presentation given by Phyllis Meadows for Martin Luther King Day celebrations here at the University of Michigan. Much of what she was saying reverberated in my head, echoing aspects of what I’ve been hearing in the many conversations about Kellergate. For starters, Phyllis Meadows (a researcher on public health in communities) said earlier today, “Sometimes our intent and our impact are very different.” Clearly, this is the case with Kellergate. I’d like to frame some of this post in the context of Dr. Meadows’ MLK Day presentation. [Please note, I am working from my notes of the presentation, not a transcription or recording, so may have inaccuracies in my quotations.]

The extremely abbreviated background on Kellergate is that two journalists wrote public pieces commenting on intimate details of the life of a cancer patient (Lisa) who has chosen to share much of her life online. The first journalist (Emma) has since admitted that the article included excerpts from content that was shared with her through private modes (direct messages and email) without either notifying Lisa nor requesting permission to share them. The second journalist (Bill) had several errors of fact in his piece resulting from inadequate research, including such easily discoverable bits as the number of Lisa’s children, which is stated on her homepage. The first was a clear breach of professional ethics, and the second creates questions about professional practice, but both have actually become almost a red herring in the larger context of the conversation, which focuses on community, context, communication, caring, compassion, and comprehension (ie. listening).

Dr. Meadows emphasized the role of elitism in creating health disparities and creating barriers to finding solutions relevant to the community.

“Who speaks.
Who listens.
Who is expected to listen.
Who is responsible.
Who is blamed.
Who makes decisions.”

Clearly, both of the journalists and their parent publications were expecting to speak, and be listened to, but were not expecting to have so very many people talk back. Commentary on the posts includes both those who criticize the Kellers and those who support them …

… , although the former seem to FAR outweigh the latter.

Kellergate Responses

The phrase / hashtag #Kellergate emerged after the second essay was published.

At this point in time, there are literally HUNDREDS of responses to Kellergate, both within the official media as well as in the blogosphere, and several thousands more if you count tweets. Phyllis Meadows, in the question and answer portion of her MLK Day talk, commented, “Most people don’t know how to talk to each other. Discourse begins by seeking clarity, asking WHY you ask that question, rather than answering based on assumptions from my mental model.”

The Keller pieces both struck a raw nerve. I don’t know if the New York Times or the Guardian are interested in healing the breach that this has created between them and the large breast cancer social media community, but if they are, perhaps they might want to create an open honest space for continued dialog around this topic. I am delighted to see the POWER of the #BCSM community, and delighted that the world can now witness that power, but I am hoping that the conversation doesn’t detour into blaming on both sides and a repetitive recreation of the injury, but rather serves as a springboard for healing. Let the journalists learn more about our communities and how to communicate with them. Let the questions they were trying to raise become a healthy honest part of the social media communities and their conversations.


First posted at the THL Blog: http://thlibrary.wordpress.com/2014/01/20/kellergate-hashtags-of-the-week-hotw-week-of-january-20-2014/

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