Social Media Is a Conversation, Not a Press Release

“Social Media Is a Conversation, Not a Press Release?” By Zeynep Tufekci, Medium.com.

Guardian writer Emma G. Keller wrote a cancer-shaming article [archived here] on metastastic breast cancer sufferer Lisa Adams’ social media presence. It was an oddly callous piece—but that was not its only fault. Emma Keller admitted that she had conversed with the subject via email and DM on Twitter without telling her that she was doing a story about her, and quoted Lisa Adams’ private direct messages without as much of a notification, let alone a permission. Emma Keller’s piece also greatly misrepresented what was happening with Lisa Adams. People like Lisa Adams are serving an important role in challenging the dominant, pink-drenched ribbon of early detection, hardship, survival and happily-ever-long-after. I was struck by the level of the misunderstanding. It was as if Keller had not done her research. Unsurprisingly, Emma G. Keller received a huge backlash for the piece, mostly on Twitter.

Former New York Times editor Bill Keller, in a new column in the Times, pretty much repeats Emma Keller’s oddly mistaken read of what is happening to Lisa Adams and completely misunderstands why people are outraged. He goes on in the same vein of what I can only call cancer-shaming: Don’t tweet so much. He also pretty much calls on Adams to accept her fate “with grace and courage,” quoting someone who “perused” Adams’ blog, directly implying that Lisa Adams is neither graceful nor courageous. Both Kellers get the basic facts wrong. That’s quite an astonishing event in and of itself—and exactly why Lisa Adams is providing such an important educational service. They both portray and interpret her as a near-death patient, as in weeks from death, who is at the hospital fighting the soon-to-come inevitable end and, suggest, perhaps she should let go and not resort to “heroic measures,” as Bill Keller titles his column. They chide her for not accepting her condition and for fighting cancer like a “military campaign” and tweeting too much about it.Lisa Adams is doing one heck of a job educating people about four common misunderstandings:

  1. Unlike the pink-drenched narrative, breast cancer is not always survived, even if caught early and the patient does everything right.
  2. Palliative care is not for the last few weeks of life to be availed of only as last resort, and can be crucial to better quality-of-life throughout all stages of major diseases, especially a painful one like cancer.
  3. Clinical trials are not just last-ditch efforts. Lisa Adams was receiving “standard of care”—what she would have gotten if she were not in a clinical trial, during the trial.
  4. Many people “live” with metastatic breast cancer fully knowing that it will eventually kill them in months or years, but there is still much that can be done to prolong life and improve its quality.

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