What is this article?

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

There aren't sufficient words to describe my reverberating contempt for the fact that this article was written and published: "Forget funeral selfies. What are the ethics of tweeting a terminal illness?"

The article, written for the Guardian by Emma G. Keller, is about the Twitter feed of Lisa Bonchek Adams, a woman with terminal stage 4 breast cancer which has metastasized to her bones, joints, hips, spine, liver, and lungs. She has long been documenting her illness, her life and her death, on Twitter, and on her blog, and Keller wants to have a discussion about the "ethics" of that choice.

One may wonder why anyone would raise a question regarding the ethics of publicly speaking about one's own terminal illness. The answer appears to be that the author of the piece is deeply conflicted about being drawn to the twitter feed of a dying woman.

As her condition declined, her tweets amped up both in frequency and intensity. I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?

"Why am I so obsessed?" A better question might be: Why am I tasking Lisa Bonchek Adams with the responsibility for my obsession?

Jessica Luther, who gave me the heads-up about this piece, asked on Twitter: "Your piece on @AdamsLisa, @emmagkeller, made her own personal journey towards death ALL ABOUT YOU. Why even do that?" That's a pretty good question, too.

After carefully detailing the quantity of Lisa Bonchek Adams' tweets ("Over the past few years she has tweeted more than 165,000 times (well over 200 tweets in the past 24 hours alone."), Keller further goes on to audit the quality of her tweeting:

It's clear that tweeting as compulsively as Lisa Adams does is an attempt to exercise some kind of control over her experience. She doesn't deny that. She sees herself as an educator, giving voice to what so many people go through. And she is trying to create her own boundaries, flimsy as they might be. She'll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate "team", but there is no mention of the cost. She was enraged a few days ago when a couple of people turned up to visit her unannounced. She's living out loud online, but she wants her privacy in real life.

…Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a "no visitors sign" on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?

Everything, everything, about that is contemptible.

Where an individual person decides to draw one's boundaries does not make them "flimsy" boundaries, if they're not where someone else thinks they ought to be. Lisa Bonchek Adams' pain is her own experience to share; she needs only her own consent to speak about it. What her children or husband are going through is not hers to tell. That doesn't seem like a "flimsy" boundary to me; it seems like a firm, clear, appropriate, and generous one.

Additionally, there is no ethical conundrum here: "She's living out loud online, but she wants her privacy in real life." Setting aside the false distinction between "online life" and "real life," any person can draw whatever lines they like about who has access to them, in what space. Plenty of people, myself among them, give access to online readerships to certain parts of our lives, some of them incredibly intimate, while wanting to retain privacy in offline life. The only ethical problem here is publicly policing those choices, as if one is entitled to complete access to another person's life.

Whether to "turn away" or immerse oneself in Lisa Bonchek Adams' public narrative of her illness is not an ethical question, nor one of "dignity." It's just another choice, like her choice to share her experiences.

Personally, I want to know how to do things. One of the things I want to know how to do is die. Every death is particular and unique, but I am grateful to people who share their deaths, who give me the best opportunity I have to learn how to do something I'm going to have to do one day.

Not everyone need share that perspective.

There's nothing inherently "dignified" or "undignified" about either choice. It is, however, pretty goddamn undignified to publicly question whether a dying woman, whose Twitter feed and blog no one is forced to read, is being self-indulgent—or whether she's being self-indulgent in the wrong way. For fuck's sake.