Lisa Adams And The Victimology Of Cancer
Yes, another Kellergate post today. No apologies for those who have heard enough at this stage, for despite what the Kellers may lead you to believe, you don’t have to read my ramblings on cancer, unless you want to. For those that do want to hear more, then read on and please do share your thoughts in the comment box below.
There are several issues to discuss in the now infamous articles on Lisa Adams. To borrow a phrase from blogger Renn, it has been a blessing and a blunder, because it has provoked a debate in the media that needed to be aired. One of those issues is the language of cancer, and specifically, the need for more sensitivity on how it is reported in the media. Those of us who have experience of cancer have written and spoken about this time and time again, but the message still isn’t getting through. Whenever cancer is mentioned in the media, I know, with a sinking heart, that the words battle, fight and being positive cannot be far behind. Cancer is an illness, not a military campaign – some people get better, others do not Lisa Adams was referred to as alternately as a victim and a cage-fighter, demonstrating yet again, how the words used to describe living with cancer are still infected with connotations of battle and suffering. In an excellent publication by Dr Kristen Garrison of the Midwestern State University, she writes that “the language of war dominates breast cancer discourse, pervading every aspect of the experience, and determining how the patient and others understand the illness.”
Women are enlisted in a battle against the self, their bodies made war zones, with cancer as the enemy, medical professionals as infallible heroes, and treatments of search-and-destroy by any means possible. While this metaphor may serve to motivate some women, we should not accept it uncritically as the only and right way to make sense of this disease; furthermore, we should recognize how the war metaphor delimits the ways women can talk about breast cancer, potentially silencing women for whom a combat mode is inappropriate or ineffective.
And how does a warrior fare in a battle? Either they emerge triumph, or they lose their fight. When applied to cancer this assumes that death is somehow a failure on the part of the patient. Back in May 2012, British journalist and broadcaster, Jenni Murray wrote about the bellicose language used to report cancer stories:
I’m at a loss to know why, despite a number of us who’ve been through the dread diagnosis and subsequent treatment pointing out that such pugilistic terminology is entirely inappropriate, we continue to be given the impression that death from cancer is somehow an indication of failure to have the moral fibre to fight and defeat it.
Many of her readers agreed.
Jenni Murray’s piece says something that desperately needs saying. The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too. A much better way to conceptualize cancer is to speak of “living with it,” for as well and as long as one can…why don’t we all agree to say that a person died after living with cancer for X amount of time?
Oncologist Dr Don Dizon writing around the same time in ASCO Connection told how he has become more “ sensitive to words and phrases, particularly when they are used in reference to patients, treatment, and circumstances surrounding recurrent disease…we as an oncology community must commit to a concerted effort to monitor the language of oncology. Words are powerful, and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”
So once again, a plea to journalists, reporters and anyone else who writes about cancer, its patients and its aftermath:
Please Mind Your Language – Words Matter!
There is a larger issue at hand here. Bill Keller is writing for one of the world’s most prominent newspapers. So why is he is so ill-informed about the realities of metastatic breast cancer? (That palliative radiation is common for people with bone mets, that being in a clinical trial doesn’t mean one has exhausted all treatments and is grasping at straws, that living with metastatic breast cancer’s peculiar rhythm of scan/treat/repeat can hardly be construed as “heroic measures” and so on…)
There’s always the possibility that Keller is dolt and has somehow managed to disguise this fact throughout his entire career. Or, it might have something to do with the popular depictions of people with breast cancer.
Virtually every story published or broadcast during Breast Cancer Awareness Month follows the same script. Person is diagnosed with breast cancer, person bravely endures treatment that can involve surgery, chemo (with attendant hair loss), radiation and possibly complex reconstruction surgery. Through a positive attitude and with the support of family and friends, the person triumphantly concludes treatment. Often, celebrities with early stage breast cancer are brought out to share their tips from their “journeys.”
We seldom–if ever–hear the stories of people with metastatic breast cancer. Indeed, many people with metastatic breast cancer are treated as though they have failed–they didn’t try hard enough, obviously, or their cancer wouldn’t have come back. People want closure and that’s not something we have. We will always be in treatment.
We are what many people fear. In Bill Keller’s mind, apparently, someone (like his wife) has treatment and is fine or someone like Lisa Adams has Stage IV disease and should summon her family to her bedside. He doesn’t seem to grasp it’s not that cut and dried.
I’ve got new for you, Bill. There are 150,000 US people living with metastatic breast cancer. It’s true that some of them are actively dying–indeed 40,000 will die this year. But there are quite a few people living with metastatic disease–and they are ALL at different places with it.
I’m sorry to disappoint Bill Keller, but we refuse to go quietly. We encourage people with metastatic breast cancer to use their voices!
Metastatic Breast Cancer Network
Katherine thank you for your comments which provide a very valuable contribution to the debate. I am still learning (and yes,.I am still sometimes misinformed and misguided) to separate the fact from the fiction when it comes to MBC. If this story has done one thing for me it has accelerated the learning process – just a shame it had to come at the cost of misinforming so many people and hurting an individual and a community at the same time.
Katherine, you brought up a singularly important issue: if Bill and Emma Keller had been hick town amateurs writing away on their little church bulletins, their nastiness would never have seen the light of day outside of their immediate hamlet. And none of us would be paying this duo’s uninformed opinions even the slightest attention – except that unfortunately both are employed by arguably the two most influential English language newspapers on earth. So we’re not only shocked by their content, but also dumbfounded that each remains the mouthpiece for such heavyweight media.
Oh, I am all over this, Marie. Yours is such an important message.
Dr. Jack Coulehan, who wrote the medical textbook called “Medical Interviewing: Mastering Skills For Clinical Practice” (a book I suspect many physicians have yet to read) cites three main forms of metaphor commonly used in doctor-patient communication:
1. paternalistic (“We don’t want her to lose hope..”)
2. engineering (“He’s in for a tune-up”)
3. war (“She’s a good fighter” – or, as Bill Keller described Lisa Adams in his New York Times column, “a cage fighter”. Now THERE’S a fighting metaphor for you, way better than being a mere “fighter”, right?!) More on Dr. Coulehan at http://myheartsisters.org/2013/02/12/metaphors-in-medicine/
Although I cannot speak for the cancer community; I live in the world of heart disease, where our doctors employ combat language and other utterly unnecessary metaphors like the best of ’em.
You are so right. Words matter! For some time, I’ve been lobbying against harmful words in cardiology. For example, how’d you like to be diagnosed with “heart failure”? What were docs thinking when they decided to start tossing around that diagnosis out loud right in front of their cardiac patients? It’s the thoughtlessness of hurtful terminology – like battle, combat, fighting, winning, beating – that distresses me.
Use of these metaphors has become pervasive throughout all branches of medicine, starting right in med school. The media is, sadly, merely reflecting what docs are already telling them.
Carolyn, I think you know by now that I am an avid reader of your writing, and so often I find parallels between what you write about and the content of the breast cancer blogosphere. We are patients, but we are also people too, and words wound us, just as much as any person is wounded by words which victimize or label them.
Excellent blog. Unfortunately the military references and metaphors seem to be widespread, not unique to the Kellers.
If we have to use metaphors, I prefer journey. No, cancer is not a special separate journey. It is a part of our total life journey. We are walking through life, and we hit this valley called cancer. For each person, that valley is different in difficulty and how long we are in it.
We may plunge ahead bravely or tiptoe through fearfully. It may be a short part of our total journey and never return, or we may be in that valley the rest of our lives. It will be easier to go through it if we face it with courage and positivity, but it is not a battle we can beat, a war we can win. We and our doctors may chose what seem the best treatments, but there is nothing we or they can do to guarantee the outcome.
Seeing life as a journey seems to fit best for me. Some parts we have more control over than others. There are pleasant sunny paths with easy roads. There are steep rocky trails that are dark and stormy. It can be a struggle, a valley to pass through, a mountain to get over.
So, if we must have metaphors, make it a journey. When I was young I read “Pilgrim’s Progress.” That book presented life as a journey. But, please, I agree, let’s drop the warrior stuff. Perseverance, constantly continuing forward, one step after the other, just seems more appropriate than wars and battles.
Thanks so much for taking the time to comment Elizabeth. As you might have already guessed, Journey is a word that resonates with me too 🙂 although I have had my share of criticism for using this word – some people have told me they detest it. Each to their own I guess. Whatever we want to say about our experience is ok by me, so long as it is something that truly speaks to our experience. What is not ok is others who have no experience using words as labels or just out of laziness or cliche. The safest thing for outside commentators is to remain neutral in their choice of words.
YES, YES, YES!!! words matter! and as we move forward, if there is any chance for a meaningful dialogue about cancer, especially ST IV met BC, coming out of the recent debacle, we must be very careful, very mindful of how we choose our words. those words are ones that will lay the foundation for educating, enlightening, and hopefully, forever change the divisiveness these derogatory and downright negative and unrealistic terms cause – which is the title of your blog – Lisa Adams and the Victimology of Cancer. perhaps some of the change will have to come from US, cancer patients, who will step up to the plate and say out loud to others – and to ourselves, to our physicians, nurses, our families and our friends, and to what is always prevalent in the context in the media – NO! I am not a fighter, I am not in a battle, I am not winning, nor losing, I am not a warrior, I am not waging a battle against my cancer, nor do I engage in kicking cancer’s ass. I am simply doing the best I am able. I can’t see any other way to dig ourselves out of these inappropriate descriptions so that the landscape of cancer – it’s diagnosis, it’s treatment, it’s side effects – is what it is: a terrible disease that is so complex and needs to be forever ridden of pugilistic metaphors that relegates those who either live or die, to be cast as winners and losers.
I so appreciate Carolyn Thomas’ enlightening comment. and I would love to see medical schools presented with an across the board panel of patients – cancer, cardiac, all branches of study, and cancer advocates for required symposiums
on this subject. it needs to be emphatic and repeated over and over. I believe wholeheartedly in a
“Words Matter Movement” that begins in our community and reaches outward to once and for all squelch these noxious, hurtful, and negative terms.
thank you marie for delving so thoughtfully into this subject and raising our consciousness so that we can begin on a much more firm footing to eradicate such poor language and words that get flung about and are a needless diversion to the real tasks at hand.
much love and light,
Oooh Karen baby you are on fire today 🙂 I don’t think I ever read a comment from you that was so passionate – good for you! You make some great comments about starting a words matter movement – I love that idea, and as you so rightly point out, this has to be taught right from med school. Let’s hope someone is listening in right now and is prepared to make some fundamental changes in the way students are taught. Thanks as always for sharing your thoughts.
Our society is so uncomfortable with harsh realities that we come up with euphemisms for everything. “Passed away” as opposed to “died.” Battle cancer, be positive, and for godsakes, don’t make us get our hands dirty by telling it like it is. We ask, “How are you?” just to expect a shake of the head that all is well because we don’t really want to know if it’s bad. Yes, words matter, and cotton-candy platitudes place an unnatural burden and pressure on those with little energy to spare.
You are so right in your assessment Eileen. While cancer taboos have in the most part been lifted in western society, metaphors and narratives have evolved to define the person with cancer – most often the brave cancer warrior battling the disease into submission. For some this narrative fits their experience, but equally there are others who feel they are expected to live up to an ideal of the cancer patient that puts added burden on an already stressful situation
I do hope that the status quo of the warrior language changes, at least a little bit. In one comment on a mainstream (not a cancer blog) article about this topic, a woman who once had breast cancer did not understand all the fuss–or how “one person” could just reject the battle metaphors when “all of society” uses them in cancer. This really struck me. Granted, not all have the same opinion, and not all choose to be exposed to blogs that discuss this issue–this patient seemed quite unaware that this is a touchy subject for many who have/had cancer. But the comment harshly reminds me how truly blind and deaf the majority of society is to many cancer issues, not that I needed the reminder.
As horrible as this whole mess is, maybe one potential positive outcome is that those of us who reject warrior talk (I’ve written about it a few times) are speaking up all at once, and maybe “all of society” will take notice, and I dare to dream that maybe it will be used a bit less.
Great to hear from you again. Since you left this comment I have shared some of the latest reader comments on the Guardian newspaper which imply that Lisa is an attention seeker and that those who engage with social media deserve all they get, It makes for depressing reading to find the public so ill-informed indeed.
Words hurt…you hammer a nail into a fence and pull it out, the hole is always there…and as I said in my blog, it is hard enough to just tread water in cancer without the universe putting rocks on your head.
One of my biggest pet peeves, “____ lost their battle to cancer.” It is nails on the chalk board, and it in no way honours that individual. ~Catherine
The war metaphors have always made me cringe. Why do they never seem to go away? I wonder if placing people dealing with cancer into stereotypic roles is a way of distancing them and making them seem a little less like ordinary folks. Because if they are just ordinary folks dealing with a serious illness, then it forces us to realize that it could be us and maybe that’s just too scary for some.
Lisa, I think you might be onto something there! Thanks for your comment
There are so many other issues buried in the Keller pieces. I hope some good can come of this mess and the discussion can continue about some of them in a civil and informed manner. And yes, words matter.
Pingback: Weekly Round Up – The Lisa Adams Edition | Journeying Beyond Breast Cancer
Pingback: An innocent teacher… | he4dgirl
Words, words and more words. I can’t understand why this man and woman,[ cant even bring myself to write their names] should write such down right horriable nasty words. If LIsa wants and choices to twit about what is happening, let her be. It is her business and hers alone. Everyone deals with what life throws at them their own way and each and every culture deals with it differently. But to verablly, the written word be so curel, unkind and use their postions is something I cannot put into words. I dont really like the battle words used to describe what happens in the cancer world or the word journey but I respect those that do. Hate the word postive too but in someways it helped in the begining. Where i live we attend alot of funerals and call to the houses. While sitting in the wake houses the amount of people saying “this cancer is taking over, the decased person had a hard time, a battle….. I have had to get up and leave. My husband tells me these people dont know what they are talking about and its what is said by everyone. It is close to the bone. But when you have a full head of hair people think your alright now. Or as i was told one day ” you got the good cancer”Social media has its place but personally reading all the blogs is something I look forward to and gives food for thought and you all know what your talking about!!! Its the basic nastiness and unfeeling that rocked me in what these people wrote. They should just build a bridge and get over it and their ownissues Life is what it is .