Policing Is a Family Affair

[Content Note: Choice policing; terminal illness; disablism.]

Last Thursday, I wrote about a breathtakingly reprehensible article in the Guardian in which Emma Keller mused about "the ethics" of Lisa Bonchek Adams tweeting about her terminal cancer.

Over the weekend, Emma Keller's husband, Bill Keller, wrote a companion piece for the New York Times, which is similarly stunning in its cruel audacity to audit whether Lisa Bonchek Adams is talking about her illness in the "right way," or even dying in the "right way"—that is, the way in which Bill Keller approves.

Here, he lays out his imagined justification for appointing himself auditor of another person's choices:

"I am not on my deathbed," she told me in an email from the hospital. "Periods of cancer progression and stability are part of the natural course of this disease. I will be tweeting about my life and diagnosis for some time to come," she predicted, and I hope she's right. In any case, I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance. That is entirely her choice, and deserving of our respect. But her decision to live her cancer onstage invites us to think about it, debate it, learn from it.

Here are two things that are wholly incompatible: Respecting someone's personal choices, and publicly debating someone's personal choices.

Further, Keller's contention that Lisa Bonchek Adams' choice to publicly share her lived experience is an invitation to "think about it, debate it, learn from it" is nothing more than a sophisticated version of the ubiquitous defense of trolling, which goes something like, "If you put something on the internet, you'd better expect people to harass you about it." Keller might resent that comparison, but it's apt for anyone who does not understand the distinction between inviting people to listen and inviting people to audit and debate one's personal choices. They are not the same thing.

After declaring that Lisa Bonchek Adams' choices are "deserving of [his] respect," Keller goes on to accuse her of "self-medicating" via social media, and wondering whether she is doing a public service, which he clearly feels she should be—because fates forfend that a woman speaking in public might be doing something for her own self-satisfaction and not in service to everyone else:

[A]ny reader can see that Adams's online omnipresence has given her a sense of purpose, a measure of control in a tumultuous time, and the comfort of a loyal, protective online community. Social media have become a kind of self-medication.

Lisa Adams's defiance has also been good for Memorial Sloan-Kettering. She has been an eager research subject, and those, I was surprised to learn, are in short supply. Scott Ramsey of the Fred Hutchinson Cancer Research Center in Seattle cited a study showing that only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so, and, he said, their reluctance has been "a huge bottleneck in cancer research." Some 40 percent of clinical trials fail to get the minimum enrollment. Adams has been a cheerleader for cancer research in general and Memorial Sloan-Kettering in particular. In fact, she has implored followers to contribute to a research fund set up at the hospital in her name, and has raised about $50,000 so far. "We love it!" the hospital tweeted last week about the Lisa Adams phenomenon. "An important contribution to cancer patients, families, and clinicians! :)"

Beyond that, whether her campaign has been a public service is a more complicated question.

Holy shit. HOLY SHIT. It's not a question at all, sir. Lisa Bonchek Adams doesn't have to justify publicly speaking about her lived experiences on the basis that she's doing a public service. Again, Keller is clever enough to wrap his gross instincts inside more tolerable language, but this is the same logic [sic] embraced by defenders of trolling, who demand that women (especially, but not exclusively) justify our existence and explain what right we think we have to participate in the public sphere.

The way these conversations around trolling go is this: A women (usually but not uniquely) is asked to justify her existence on the internet. Supporters point out she has an audience. Then comes the concern trolling about how maybe she's setting a bad example for her audience, or the hate-trolling about how her audience is comprised of people fundamentally broken in some way. And then comes the insistence that she doesn't deserve her popularity, her reputation. It's a scenario that plays out between female bloggers and male trolls over and over and over. And so goes Keller:

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.

Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

"I'm the last person to second-guess what she did," Goodman told me, after perusing Adams's blog. "I'm sure it has brought meaning, a deserved sense of accomplishment. But it shouldn't be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage."

That is the note on which the piece ends—the implicit accusation that Lisa Bonchek Adams is neither graceful nor courageous.

John Degraft-Johnson storified reactions to Keller's piece here, in which we additionally find out that he got basic facts wrong and used war metaphors which Lisa Bonchek Adams explicitly rejects.

I don't know what this pair's obsession with shitting all over Lisa Bonchek Adams is, but fuck this and fuck them.

[H/T to Jess.]