Offensive Guardian article on Lisa Adams causes backlash

by
Lisa Bonchek Adams

Lisa Bonchek Adams

Update: Since posting this yesterday, there has been an even greater surge in online commentary about this story. Here is a link to a more condensed version. 

Although I read The Guardian newspaper online from time to time, I missed the article that appeared last week, Forget funeral selfies. What are the ethics of tweeting a terminal illness?  which snidely criticized Lisa Bonchek Adams, who tweets and blogs about her experience of metastatic breast cancer.

The first I heard of it was on reading a post by Nancy of The Pink Underbelly blog and so I went to read the original article. I wanted to write my own perspective, but for the first time, I was so shocked and dismayed at the insensitivity (that’s putting it mildly) of its author, Emma Keller, that I was lost for words. Luckily, others were not, including Nancy who wrote:

Like many of us, Lisa started blogging and tweeting to communicate with her supporters and to connect with others on the same “journey.” Lots of us in cancerland do this; it’s a quick and easy way to broadcast the latest developments, it’s an avenue to connect with others in the same boat, it allows for the dissemination of vital information, and it’s therapeutic. The reasons for blogging and tweeting are as varied as the cancer patients themselves.  While we all face a dreaded disease, we do so differently: some of us confront the beast head-on while others close our eyes and wait for it to be over. Some of us share every gory detail while others keep it all inside. Some of us rant while others count our blessings. The one unwritten rule among us is simple: don’t judge. Don’t judge. What works for me may not work for you. It’s all good, just don’t judge.

Don’t Judge Me Until You’ve Walked In My Shoes

But judge is exactly what Keller does. I keep coming back to the word snide again, because that is the over-riding impression I have of the journalist, who lists exactly how many times Lisa has tweeted in the past year (Keller actually counted!) and even points out that Lisa tweeted more than 200 times in a 24-hour period. Well so what!  No one is saying the world should follow her tweets. We choose whether to do so or not.  While I don’t know her in person or even that well virtually, I choose to follow Lisa, to gain a better understanding of the lived experience of metastatic cancer – something which has been kept hidden behind closed doors for far too long.  I remember vividly when she announced on Twitter that she had been diagnosed with stage IV cancer, and how the Twittersphere rallied around her,  and I have featured her blog several times here on the weekly round-up.  Lisa is not the only MBC patient I follow: there are others whom I am more connected with, and who also write about their experience. As Jody writes on her blog Women With Cancer:  “For many of us, social media has been the only vehicle in which something approaching truth can be found about living with cancer, and I mean actually living with it, not understanding what cancer is or a definition of chemotherapy.” Words, echoed by Janet Freeman-Daily on her blog:

The more I think about it, the more it seems this mess reflects how little major media and the public at large understand the epatient movement and cancer.  The blogs, tweets and forum posts of actual cancer patients are invaluable to those dealing with the life-changing personal crisis that is cancer.  Epatients like me share our experiences and learn from each other regarding the diagnostic process, terminology, second opinions, treatment options, side effects, research, clinical trials, palliative care, hospice, and dying with grace and dignity.

TMI?

Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much? Emma Keller, The Guardian 

Who decides how much is too much? Keller seems to think she can decide the answer to that, questioning if there should be “boundaries” put on Lisa, and her ilk, who have the audacity to regale us with their experiences.  “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” asks Keller. The arrogance of that statement is still making my blood boil 24 hours after first reading it. In the words of one Twitter commentator “Even more presumptuous than telling someone how to live is telling someone how to die” a point expanded on by Cameron Gearen, who writes that:

There are many ways to live, and just as many ways to die. Denial is an absolutely fine defense mechanism, as is feistiness. It is impossible—and arrogant—to adjudicate among them. And when one has power, when one has access to the pages of The New York Times or The Guardian and chooses to fill them this way—well, then it’s downright egregious.

As is Keller’s crass questioning of the “appeal of watching someone trying to stay alive?”

Appeal???

Nancy has the perfect answer to that question Mrs Keller:

First-person accounts from the front lines of the war we wage on cancer are not reality TV. To equate the real-life struggles of life — and potential death — in cancerland with a guilty pleasure one becomes hooked on is insulting.

And a fitting rejoinder from the author of Telling Knots, herself a Stage IV cancer patient:

Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?

Elizabeth shares the letter she wrote to the editor of The Guardian on her blog and makes a similar point:

So many people with terminal disease spend their last years in isolation, even if when they are still able to work and carry out many daily responsibilities. Many of them don’t even “look sick” until much later in their disease progression. But their lives can be lonely and arduous. Social media can serve as a way for people to connect with others who understand.

Backlash

I am still raging at this article, but heartened that the backlash against the snide, callousness of it triggered an action by the newspaper to take down the offending piece. If you click on the link to the article you will now find the following statement (however it has been cached here):

Ethical Journalism

I am most incensed that Keller questions the ethics (oh the irony!) of sharing a human experience in the way that Lisa and a cohort of others do via social media. As Telling Knots explains (with an eloquence and grace markedly missing from Keller’s writing):

This is not a question of ethics, Emma Keller; it is a social issue and an eschatological question (in the larger sense). It is not a social gaffe on the level of funeral selfies; it is an expression of our humanness, of our being as a social animal. Most importantly, it is not for you or anyone else to judge the decision of a dying woman.

Megan Garber writing in The Atlantic, points out that: “Adams herself makes no claim to universality, or to ethical authority, or to any kind of symbolism about The Way We Live Now. It is the journalists—hungry for new insights, thirsty for new trends—who are saddling her with the freight of moral implication and then judging her for the audacity they infer.”

On the topic of ethics, Gayle Sulik, sociologist and author of Pink Ribbon Blues, writes on her blog:

If there are ethics to tweeting your illness, I haven’t seem them. But there are clear ethics in journalism when in comes to, among other things, accuracy and confidentiality, two tenets the Keller campaign against Lisa Adams clearly breached. The articles could have raised important questions about America’s relationship with death, the overzealous push for aggressive interventions, or the need to contemplate public disclosures of private issues. Although the potential was there to promote such inquiry, the Keller articles taken together did not invite such reflection. Instead, the Kellers characterized Lisa Adams inaccurately to support their a priori conclusions about about the right ways and the wrong ways to live, die, and talk about terminal cancer.

Sociologist Zeynep Tufekci pointed out in a piece entitled Social Media Is A Conversation, Not A Press Release , that while Emma Keller asked people on Twitter for their thoughts about Adams and the topic of tweeting about cancer, she didn’t respond to any of the discussion that she triggered by doing so.

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.

As I write this post, I am dipping in and out of Twitter to watch the many comments and opinions that have ensued in the wake of Emma Keller’s journalist husband’s opinion piece in the New York Times in which he defends his wife’s views. I haven’t even touched on the inaccuracies and blatant ignorance of what it is to be diagnosed and live with metastatic breast cancer that both Mr and Mrs Keller’s articles contained.  The recently formed alliance that is the Metastatic Breast Cancer Network has a post which should be of help to any journalist who is interested in accurate reporting of the disease. You can read it here.   Nor have I explored the misogynistic tenor of the Kellers’ articles (would the same have been written if Lisa was  a man? Author Corey Robin pointed out on Twitter that Bill Keller referred to Christopher Hitchens as ” dying of esophageal cancer, a fact he has faced with exceptional aplomb.”); or the misguided and outdated use of words, such as fighting, hero, battle and other combative and military cliches, which Lisa herself rejects in her own blog. It speaks to journalistic laziness to continue to use these words which have been rejected by the majority of us with cancer (read Why Words Matter for more on this).  Margaret Sullivan, writing in the New York Times opines about issues of tone and sensitivity:

For example, when Ms. Adams has made it so abundantly clear in her own work that she objects to the use of fighting metaphors in describing experiences with cancer, it was regrettable to use them throughout a column about her, starting with the first sentence. It suggests that Mr. Keller didn’t make a full effort to understand the point of view of the person he’s writing about on the very big and public stage that is The Times.

And what of Lisa herself in all this?  Lisa, who the Kellers have written off as dead already. Addressing Mr Keller directly, she tweeted “The main thing is that I am alive. Do not write me off and make statements about how my life ends TIL IT DOES, SIR.” (You can read a storify of her reaction on Twitter curated here).

I will leave the last word to Telling Knots who I think has hit the nail quite firmly on the head with these words.

Could it be that Keller’s discomfort with her “obsession” with Lisa’s tweets is a reflection of society’s discomfort with death and dying? People like Lisa and like many of my brothers- and sisters-in-mets (my fond term for people who have metastatic breast cancer)—people like me—cause discomfort to some because we dare to bring our experience into the full light of day. We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying.

What are your thoughts on this? Is there a grain of truth in what Keller wrote? Am I being too sensitive? Or was this piece of journalism way out of line? Tantamount to cyber bullying?  As always, I value your contribution to the debate. 

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