The ethics of scolding the dying

In posts by Hoyden authors on disability and disablism over the years, the problematic aspects of the “SuperCrip” stereotype have several times been discussed, whereby certain people with disabilities who “overcome their challenges” and “prove that nothing is insurmountable” by becoming elite athletes or innovative entrepreneurs or record-breaking charity fundraisers etc are held out to other PWD as role models. It doesn’t take much reflection to realise that, whether consciously deployed as such or not, the SuperCrip mythos often works functionally as a silencing tactic aka shaming tool while masquerading as inspirational encouragement (Look at what X has been able to achieve! If you just tried harder (instead of bringing me down by managing your disability as you currently are which makes me feel uncomfortable about you in some way that is entirely my problem actually) then life would be so much better (for me! so you should do it for you…). Don’t you see?).

There’s a similar stereotype held up to the terminally ill about what a “good death” looks like, and what that tends to look like is a lot like if you don’t make your death as easy as possible for the people around you then you are a bad person. Honesty about your pain and fear and raging against the dying of the light? That’s for poets writing about the deaths of other people, not for you who is about to die to use while dealing with your own imminent death. No, what you who is about to die is expected to do is “put on a brave face” for others and prioritise expending your limited energies on not letting that “dying with dignity” mask slip.

So what happens when a woman who has been blogging and livetweeting her treatment for breast cancer for many years decides to keep on livetweeting once she receives a terminal diagnosis of metastatic disease? By which I mean what happens beyond what might be regarded by most of us as the rational expectation that some folks will want to read it and some folks won’t, on a platform that makes following or not following or even blocking an individual tweeter extraordinarily simple?

Columnist Emma Keller decided that it was her place to get all finger-pointy about “the ethics of tweeting a terminal illness” on the opinion pages of a prestigious international masthead, that’s what. And when her article was roundly condemned so vociferously (especially for breaching ethical guidelines about quoting from private emails and notifying subjects that an article was about to be published) that it was pulled from that masthead pending investigation [cache here]? Well then her husband Bill got even more finger-pointy (aka bullying) in the opinion pages of the prestigious international masthead on the other side of the Atlantic (of which he once was executive editor), that’s what happened. This gentleman with access to a particularly large and powerful media megaphone was particularly concerned that Lisa Adams’ writing about her dying process in blogs annd tweets not be “unduly praised” for how she was battling cancer “heroically” instead of gently accepting death, when in fact combat metaphors for cancer treatment have been criticised and rejected by Adams explicitly and repeatedly.

As you can imagine, the online response has not been kind. Critics quickly pointed out, for one thing, that Keller claimed that Adams had two children, when she has three, and if he had really been reading her blog or Twitter feed how could he miss that? Dr. Jennifer Gunter tweeted: “So according to @nytkeller and wife there is A) a right way to blog B) a right way to tweet and C) a right way to have cancer.” @KenJennings revealed, “Terrified I might get cancer, because what if Bill and Emma Keller yell at me.” James Patrick Gordon mocks: “Ms. Adams, questions have been raised about how you’re choosing to cope with cancer. How do you respond to the allegations?”

Susan Orlean: “I am appalled on every level by Bill Keller’s oped piece about @adamslisa. Astonishing.” Martha Plimpton: “I need to ask @nytkeller what this deeply condescending piece is aiming for? On every level, it reeks of shaming.” And from Ruben Bolling: “Bill Keller is against women fighting cancer, unless anonymous Bush administration sources say cancer has WMDs—then: TO WAR!”

Xeni Jardin of Boing Boing, who has tweeted her own struggle with cancer (@Xeni) over the past couple years to wide acclaim, charged that B. Keller had taken something she wrote last year, about wishing she had been a little less “sharey,” out of context. And she replied angrily to much else in the Keller column in a series of tweets, such as:

“It is bizarrely tone-deaf, ghoulish, & lacking in empathy all at once. It mansplains breast cancer, but as if talking about a pork chop…. Don’t kick a woman when she’s down…. She’s not a ‘standard bearer.’ Or a ‘hero.’ Or ‘warrior.’ SHE IS A WOMAN IN THE HOSPITAL WHO HAS METASTATIC BREAST CANCER AND 3 KIDS…Lisa has written extensively about rejecting war, hero, battle, weapon, warrior clichés to describe her experience. His hangup not hers…. I feel rage & disgust at Bill & Emma Kellers’ twinsie opinion pieces about @adamslisa. Shoddy, shitty, heartless, inaccurate grandstanding…. Bill & Emma Keller’s weirdly obsessive, bullying opeds are causing real pain, distress, distraction to Lisa & family at a critical time.”

One of the reasons that Keller E & B give to justify their columns naming and shaming a woman for unapologetically documenting her terminal illness is the idea that simply by dealing with her cancer in the way that feels right for her Adams is somehow criticising or belittling the memory of Emma Keller’s father and other cancer patients who chose to deal with their cancer differently. Hm.

Index thumbnail image credit: Matt Bors editorial cartoon portraying Bill Keller puncturing a Get Well Soon balloon with a pen-nib.

Categories: ethics & philosophy, media

Tags: , ,

15 replies

  1. Historically, the ‘good death’ (effectively accepting your death, comforting others around you, making peace with God and actively engaging in religious solace) was viewed as evidence of salvation, so it was quite important to a large number of people in the Christian West. This, in turn, made it very difficult to cope with the deaths of those who died ‘badly’, because it left a question mark over that same salvation.
    It’s quite fascinating that these cultural values continue into a more secular age as a model for dying, when the ‘motivation’ is gone.

  2. Your opening paragraph put me in mind of a bit of a doco I saw recently – or it might have been on the news – praising a young man who has a degenerative genetic condition, but is breeding alpacas and doing various other things. What was never mentioned was that he was able to do this, to get the medical support and the freedom to do all he could because his parents were obviously wealthy. I kept wondering how much he’d be doing if he’d been born poor. Not a hell of a lot, I suspect.
    On the main topic – words fail.
    That’s a very good point, Feminist Avatar. I wonder if it’s melded with our current cultural squeamishness about death?

    • Thanks for the Making Light link, Megpie. It’s beautiful to watch writerly folk get trenchant.

      • P.S. I love this summary of the arrogance from Will Frank at #12:

        The Kellers have a massive publicity and media engine at their disposal. They’ve made this a Story. Whereas, up until this, Adams’s feed was, in Keller’s own words, the province of “[a] rapt audience of several thousand.”
        What the Kellers are saying is roughly this: “Hey, this woman talks constantly to a few thousand followers about something I don’t like! Let’s tell millions of people about it so they can and pass judgment on her, implicitly making her personal choices a matter of public opinion! And let’s not tell her, because she must be OK with it, or she wouldn’t have committed the sin of publicly existing in a manner we don’t like!”

  3. How on earth I can’t even. Who the fuck do they think they are. FFS.

  4. Goodness.. what on earth happened with these people?

    • With the most generous eyes on it as I can possibly manage, Emma Keller is still processing her grief over her father’s death not too long ago, and Bill Keller is defending his wife’s reputation following the criticism by amplifying her original article’s rather rambling incoherence around her emotional response to Adams’ diarising. That he torpedoed this intent of his article with callous pomposity is trademark Bill Keller.
      However, they are also two people with an international readership and certain level of fame aiming their enormous media spotlight on a woman who had until now a readership of only a few thousand people, quoting her private communications without asking permission, and not even notifying her that they planned to write columns about her. Their ethical focus is aimed in entirely the wrong direction.

  5. That’s my impression too. I remember my grandmother getting rather upset with Dudley Moore when he died. He had been diagnosed with the same relatively rare degenerative illness (super nuclear palsy – it’s often misdiagnosed as Parkinson’s) that my grandfather had, and she thought that now a celebrity had this disease it might get a bit of attention and publicity. Unfortunately (to her eyes) Dudley chose to remain private for the remainder of his life.
    I suppose the difference is that my grandmother didn’t have a national newspaper column to complain in.

  6. I wonder what part of None Of Their Goddamn Business the Kellers don’t understand?

  7. Thanks for this, tigtog. I was so upset when I read these pieces; how dare a sick person talk about being sick. That’s not the right narrative – where’s the inspirational recovery memoir?!

  8. Linda Holmes at Monkey See


    has a really nuanced take on how patronising the NYT article is in particular and the skewed perspective both writers bring to their analysis of the Blog and Twitterverse.

  9. Long ago, in a previous life, a book group I was in discussed a book about dying well. My impression from the book and from the other participants’ comments was that they seemed to think that everyone could and should insure that their dying was a “good death”.
    I couldn’t help thinking: oh, great, now you can not only be a failure in life, you can also be a failure in death. Does this mean that people who burn to death in a car wreck, or who jumped from the upper floors of the World Trade Center to escape the fires are fuck-ups because they didn’t have the leisure to make their dying a “good death”? (Yeah, if you’re any good, you should at least chant “om” and “live in the moment” — on the way down.)
    It all strikes me as yet another attempt to pretend that when life is agony or hopeless or sucky for anyone, it’s really their fault. To deny that suffering is often unavoidable and “unjust.” (Cf.: the book of Job.)
    Sometimes the cloud has no silver lining, folks.
    (Sometimes all you can do for someone is to just listen and hear whatever pain and despair they’re suffering, and not deny it ….)

  10. I was privileged to visit and help out, with chauffeuring and other household tasks, in the last few weeks of my best schoolfriend’s life. My BFF was always a salty, outspoken, and somewhat grumpy person and she continued this to the fullest: she cooked for us (with me driving, she was able to get to the market to choose ingredients herself) and hung out and had a good time, but she was under no illusion that cancer sucks and she was completely uninterested in retailing “inspirational” thoughts and sayings.

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