Offensive Guardian article on Lisa Adams causes backlash
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.
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?”
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.
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):
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.
I’m glad her stupid, insensitive page is down but now her husband’s page is up on the NYTimes and it is clear a case of Dumb and Dumber.
Dumb & Dumber — that made me chuckle!
Stupid husband article is: http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html?ref=opinion&_r=1
Thanks for the link Caroline – seems they are a well-matched pair!
I watched this unfolding on Twitter and read both articles and like you was disgusted. Disgusted not only with the authors themselves, but that the Guardian and NYT thought that either piece was worthy of publishing at any level. A complete lack of moral compass on all accounts. You encounter people of this ilk on occasion but to see the words in print, that they feel they have the right, the disgraceful judgement, ugh, words don’t suffice. As you say the backlash against the pair was heartening, but I feel for Lisa that she should ever have had to deal with this.
I feel your frustration in trying to locate the right words Rusty – I really struggled and in the end had to turn to other better writers than I am to put into words how I feel about this. You mention moral compass, and you are so right – which makes the title of the piece on the Guardian, questioning ethics very ironic!
I’m shocked that Lisa’s wonderful blog has been reviled and repudiated. What’s controversial about metastatic breast cancer? It is what it is. And how each of us who has it chooses to deal with it is his or her own decision. Personally, I like Lisa’s approach to try every avenue open to her. I do the same. Some of it may have to do with our stage of life, where we want to witness more milestone events regarding our family, but not all of it. The fatalistic approach of this vindictive journalist and now her husband just doesn’t cut it with me. Why must those who have hope be judged, and why must those who choose not to fight be judged? I have good days and bad days. I personally try to see the glass half full, imagining those clinical drugs fighting back the cancer cells with all their power and might. I’ve been through pleural effusion, as has Lisa. She can get through this, as I did. It’s a shame that Lisa’s “darker poetry” is discouraged in a culture of literary freedom. I happen to appreciate those poems, and if they happen to depress some people who aren’t fighting a stage IV diagnosis, then those offended can choose not to read the blog. It’s as simple as that. Don’t discourage us from writing; for some of us, it’s all we have left. Thanks for bringing this to our attention, Nancy and Marie. XOXO
The judging that goes on in our society Jan and Lauren is abhorrent – and lest we forget, this judging also goes on among the cancer community too. There is only one antidote to judging and that is compassion – something we could all do with remembering. Walking a mile in another’s shoes may be a cliche, but there is often much truth to be found in cliches.
I’ve said it elsewhere…why can’t people let Lisa do Lisa? Good lord, what is wrong with people, there is no right or wrong way to do cancer…we all find our way to do it, and for god sakes, and doing all we can to tread water without someone putting rocks on our heads.
Many thanks, Marie, for bringing this to the attention of a wider audience. In the midst of all the muck, one thing is clear: those of us in cancerland take care of our own. Let’s hope that the hurt and insult Lisa feels from the Keller’s’ irresponsibility are somewhat marginalized by the lion’s roar of her online friends in her defense.
I thought Fred’s article actually managed to be more offensive. Not only did he complain about Lisa’s lack of stoicism in discussing her suffering, but he also suggests that there is something ignoble about her very survival. That she should do the honorable thing and die already to spare society the expense of her continued treatment.
Someone should tell him that the Anthony Hopkins character in Remains of the Day was not a role model to emulate, but a tragic figure who squandered his chance at true meaning and fulfillment.
Trevor and Nancy, thanks for weighing in here. I actually couldn’t bring myself to read her husband’s article, which is why I refrained from commenting. Nancy, I think I saw someone tweet or write someplace, that those who are vocally supporting Lisa will be viewed by the likes of the Kellers as her “devoted followers” – which once again shows how they have fallen wide of the mark in understanding the changed nature of our interactions online. Emma Keller in answering comments on the article, before it was removed from the site, kept asking if the commentator actually knew Lisa – she seemed very hung up on this point. Anyway, it is heartening that the blogosphere and twittersphere have so effectively and eloquently come out in force to repudiate the vilification of a much-respected blogger.
Glad for the back lash… Writing and sharing helps on every level… If people do not like what we say or they do not want to be confronted by the truth then just do not read … Yes the Kellers.. Dumb and Dumber for sure!!!.. And a cyber hug to Lisa Adams…
Thanks for writing about this, Marie! Lots of good articles appearing today in support of Lisa. Wired has a good summation (http://www.wired.com/wiredscience/2014/01/lisabadams-keller-ugh/) that also includes a link to the original post written on January 8th by Emma Keller and subsequently taken down by The Guardian ( https://web.archive.org/web/20140109033020/http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics).
For those on Twitter, you can show Lisa your support by using the #IStandWithLisa hashtag.
Thanks for including my post in your excellent narrative of the situation. The Kellers have some kind of issues, it seems, but they need to work that out on their own and not by bullying Lisa!
Renn, thanks for those links, particularly to the archived version of the offending piece – I think many didn’t get to read the original before it was taken down – and in the interests of fairness, it should be read.Knot Telling, thank YOU for your eloquence and grace, something very much missing from the journalistic writing in question!
I’ve been at a loss for words, and that doesn’t happen to me often. The heartlessness of it all, to not only attack a cancer patient, but one who writes as eloquently as Lisa. Her blog has helped so many people. She’s a strong woman, but I also imagine her feeling fear as she’s lying in the hospital bed. She posts and tweets as much for herself as others — to feel connected at such a vulnerable time. I can’t believe that someone would attack her in that situation. There are no words…
Glad I am not the only one to have been struck dumb when faced with such callousness Eileen. As I have said already today several times, lucky for others that others have so eloquently found the words for us.
I’m sickened that the Guardian published this article. I absolutely believe its about our societies inability to talk about death and dying. And it’s that that isolates so many. Shame on them yes, but let’s open up these taboos. It’s needed.
Audrey, isn’t it so ironic that this very article which has the arrogance to question the ethics of a cancer patient, failed to see the very basic journalistic ethics its author herself breached??
Thank you for posting this, Marie. I have to admit I was unaware of the whole story, but reading about it now makes me angry. This is the worst kind of cyber bullying. Personally, I welcome the fact that people – in any situation in life – can find like-minded souls and support via the internet. And, as you say, it’s our choice whether or not we follow someone or read what they write. I’m glad the community has rallied round to support Lisa.
As we can see Julia, the Kellers have missed this important point about the value of social media to find as you say “like-minded souls and support”.
It was surreal to read the article. It felt like direct bullying, and with such little understanding of the community we have online. Geez, just unbelieveale, and I cannot help but wonder how the Kellers feel now about their massive mistake. Is it too much to hope for an apology, I wonder?
Very good collection of thoughts, Marie. ~Catherine
Absolutely Catherine! The same theme is emerging through people’s comments that there is no understanding for the support communities that form online.
Wow, Marie, you really summarized things well here. Thank you! And “snide” that is a good word choice for the Keller pieces. I was going to write about this and then I wasn’t. And then I couldn’t sleep! So yes, I’ll be chiming in. You know me, always a bit late… Thanks again.
This is really well written Marie. I am so disgusted with the Kellers. When did journalists become bullies? I think the New York Times still owes an apology. I love the way you tied in what people have written as you expressed your thoughts. I wish the New York Times would wake up and write some real journalism about breast cancer so they know what they are talking about. Then they would at least be reporting the realities of this horrible disease with a new understanding by listening to why the piece was so wrong on so many levels. Thank you. xoxo – Susan
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Thank for including the Metastatic Breast Cancer Network’s commentary. However we are not a recently formed alliance. You are thinking of The Metastatic Breast Cancer Alliance: http://www.mbcalliance.org/ (MBCN is a member of that group, which is indeed newly formed)
I think we run the risk of trodding into the same error field as the Kellers, if we start to make assumptions about their psyche’s and why, and their fears….as they did with Lisa. It would have been perfectly okay in my book, for Mrs.Keller to discuss her discomfort and reasons why, but she crossed the line in making assumptions about why Lisa blogs or tweets…kind of like the dimestore psychology it seems is popular in dissecting their pieces…Don’t get me wrong, I think they were wrong on many fronts, particularly the abuse of Lisa’s emails and confidences, however, we must be careful as a blogging community that we are not calling the kettle black, when we are being just as much a pot….
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