Last week was a curious one. First, 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.

I knew the misrepresentation because I’d been following Lisa Adams and a few other metastatic cancer patients for the last year because I wanted to write a piece on how social media makes visible that which was previously less visible and more isolating—like terminal illness, or metastatic breast cancer, especially for those whose story does not fit into happy narratives of survivors showered in pink paraphernalia. The disease kills many, including those who do everything right, despite early detection; yet fairly little research funding goes to studying the disease in this last (so-called fourth) stage. 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. So, I’d been following her for awhile—which is why as soon as I read Emma G. Keller’s piece, 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. Oddly, even though she had tweeted out “tell me what you think” about her piece, she refused to engage in a conversation on Twitter. She wanted everyone to go to her article and leave comments there. This was extra insensitive since racking up page-views at the expense of a cancer patient seems worse than cold, but also because if hundreds and thousands of people you are writing about, including the subject of your article herself, angrily contest your interpretation, it should behoove a journalist to listen and learn, rather than get defensive and double-down.

Yet double down is exactly what Emma’s husband, former New York Times editor Bill Keller, did this week in a new column in the Times, in which he 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.

First, 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.

You can go on Twitter and see thousands of reactions from cancer patients who can react directly to this chiding for them to be quiet, and to imply that to talk openly about one’s disease is to lack courage or grace, but that’s not what I want to focus on.

If the point one wants to make is that once “nothing more can be done to prolong life,” it is better to die without a cascade of expensive, intrusive measures that do little to prolong life yet produce an awful quality of life racked by pain, which seems to be Bill Keller’s issue, one can make that point. It’s a perfectly valid point, and one Lisa Adams might agree or disagree with—except that’s not why she’s at the hospital. It has nothing to do with her present stay at the hospital.

If you actually take time to read her tweets and her blog, rather than briefly perusing them, you would find that she hates the “war metaphor” that Bill Keller projects onto her, and she is far, far, far from a denialist.

Lisa Adams’ tweet stream is full of her smacking down people who tell her she might survive cancer, that she should pray and might get healed, that she should drink more carrot juice, or any other number of options that are futile—and as she often reminds people “cell biology reigns supreme.”

Lisa Adams is not in denial about her options or her prognosis and it’s very, very clear from her writings. How the Kellers could both get it so wrong is astonishing.

So why is she in the hospital? Because she is getting palliative treatment for pain for tumors that are growing in her spine. Breast cancer that has metastasized in your bones can be painful, but will not —yet— kill you. It’s only after the lungs, brains and other soft tissue are affected that death follows. Once the palliative treatment is completed, Adams will return home.

Adams tries to explain this important point repeatedly: palliative or hospice care is not necessarily just for the last few weeks or months of life for a terminal patient. Pain relief and symptom management are important throughout the arc of metastatic cancer and patients should not wait to seek palliative care until the last minute as quality of life can be improved.

Similarly, the Kellers seem to interpret her “clinical trial” as a last-ditch effort. However, if you actually read her blog and her tweets, she makes it clear that clinical trials, where the control arm is “standard of care,” or where there is no control arm, are not just for end-stage patients. (Though some are—the point is, not all are).

In other words, 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.

5) [Added later because many people are linking to this piece as list of inaccuracies in the Kellers columns and this one is really important to the story]. Emma Keller writes of Lisa Adams’ “seven year decline” and Bill Keller starts his column with this sentence:“ Lisa Bonchek Adams has spent the last seven years in a fierce and very public cage fight with death.” These are both incorrect statements and should greatly influence how one interprets Lisa Adams’ social media presence over the years. According to all her clear public writing, she was in remission for five of those seven years, where there was no evidence of the disease. She was only diagnosed with a recurrence, a metastasis in her bones, little more than a year ago. It’s remarkable to get such a basic but crucial fact so wrong in two columns in two major newspapers in space of a few days.

In short, both Kellers miss every point Lisa Adams makes—and write articles unrelated to her actual experience, or the community around her. Emma Keller seems to treat Lisa Adams’ social media presence like a car accident and ponders if it is ethical to look. That’s Emma Keller’s problem—and the piece could have been written as a first-person reflection of her own issues without bringing up a particular patient, as the piece is clearly not about this particular patient, Lisa Adams, but is about Emma G. Keller’s existential anxieties.

Bill Keller, on the other hand, has something he wants to say about how end of life is perhaps unwisely prolonged in small, painful increments with massive technological intervention in this country, so he projects this situation to Lisa Adams—except that is not applicable in this case. Lisa Adams is not prolonging her last few weeks of life with a cascade of interventions. She’s getting treatment for pain in her bones—the type of tumors that won’t kill her till they spread elsewhere, which may be soon, or may be years away.

How could they both get it so wrong? I believe it is because neither have actually understood how social media works as a conversation and as a community. Emma Keller’s piece is awful in many ways as she violated, in my view, fundamental journalistic ethics (and rather than a true understanding and apology, she expressed “her regrets” not giving advance notice to someone she was communicating with that she was going to write a story about her, and for quoting private messages without permission.)

Bill Keller’s piece is worse in other ways because instead of trying to understand why his wife’s piece drew such ire, he furthers the misunderstandings which are not just wrong, but are hurtful to a gravely ill person who is not yet dead, thank you very much. Also, Bill Keller has a huge platform so he should have spent more time actually researching the piece rather than what seems like an ill-advised rush to defend his wife.

How should it have been written? In one word: When trying to understand social media presence, dear journalists, don’t “peruse.” Engage. Because that’s how the medium works.

To understand these basic points Lisa Adams made, repeatedly, over the years, you’d have to be engaging her feed, and not just reading snippets of it and projecting it onto one’s own anxieties or issues.

Lisa Adams is not a press release, and is not optimized so that a journalist can swoop in, spend a few hours and understand the conversation and the community of sharing, education and support that has grown around her and other cancer patients, families, and other ordinary people. She engages people and responds to them—unlike Emma Keller who refused to engage the thousands of people who reacted to her and merely told them to interact with her only in a subordinate manner: by commenting on her article, in the comments.

Bill Keller, the former editor of the The New York Times, I’d hope, would have refused his own column because of the inadequate research. It appears that he just checked out the feed and thought he could write about it with a few days of “perusal” when, in fact, a conversation of the type Lisa Adams is having is a long one and cannot be understood simply by looking at her or the last few days of tweets and projecting from one’s own perch.

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 with implicit and explicit conversations and channels of signaling, communication and impression. The frozen snapshot one may “peruse” later is not an accurate, thorough or deep representation of the actual conversation that took place.

Going ahead, I think they both should stop reacting so defensively and wonder why so many people are upset with their approach and, at a minimum, issue an apology to Lisa Adams and to her family, including her three children, who will now see that both The New York Times and The Guardian think their mother is on her imminent deathbed. Also, the important message that hospice and palliative care are not just for the last few weeks of life has been butchered—and that is quite a shame as more patients can benefit from earlier, more active pain management.

Finally, both Emma and Bill Keller wonder about the ethics of tweeting so much about terminal illness. I suggest there is a deep ethical issue here indeed but it’s not that one. The ethics to ponder is that of writing about people and communities without fully trying to understand them from the ground-up, through their actual lived experience—offline and online.

If anything, social media has helped move us to a world in which people are no longer passive, silent subjects of journalists (or academics or other gatekeepers of public discourse). 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. And how to deal with that reality, not whether cancer patients should tweet that much, is the real ethical question before us.

PS. The Guardian has just taken down the original Emma G. Keller article which was live just as I posted this piece. The piece is archived here. I agree with the deletion and hope it will be accompanied by understanding and true apology—not a “I regret y’all misunderstood me” tenor addendum which referred only to the fact that Emma Keller had quoted DM’s without permission and had not notified Lisa Adams of the story.

Technology and Society

Talking about technology and society as more than gadgets & features. Conversations on social interactions of technology, not just the latest toy or the hottest start-up. Also not the place to write about how to make a little more money or be more productive in your job.

    Zeynep Tufekci

    Written by

    Thinking about our tools, ourselves. Assistant prof at UNC iSchool. Princeton CITP fellow, Harvard Berkman faculty associate, Sociology.

    Technology and Society

    Talking about technology and society as more than gadgets & features. Conversations on social interactions of technology, not just the latest toy or the hottest start-up. Also not the place to write about how to make a little more money or be more productive in your job.

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