Barbara Ehrenreich on Breast Cancer
Barbara Ehrenreich offers a unique and valuable point of view about an issue that so many care so passionately about...
Actually cancer was not my first run-in with a breast-related disease. About 20 years ago, the American Society of Plastic and Reconstructive Surgeons announced that small-breastedness is itself a disease: "There is a substantial and enlarging body of medical information and opinion to the effect that these deformities [small breasts] are really a disease." They even gave this disease a name-micromastia.
I was myself a sufferer from micromastia. It wasn't easy. Oh, I managed to hobble around, raise my kids and get my work done, but I knew how ill I really was.
Then just 3 years ago, a doctor told me that I didn't have to worry about breast cancer too much, because my breasts were small.
Now there's a doctor who doesn't have to worry about brain cancer too much...
Here's another relevant personal fact: In the 70s I was an activist in what we then called the women's health movement. We campaigned for safe contraceptives, against unnecessary surgery, for the option of unmedicated childbirth, for the right to choose abortion.
In the area of breast cancer, we battled against the practice of proceeding directly from biopsy to mastectomy, without even letting the patient wake up to make the decision herself. We wanted women to have the information and the right to make their own health care decision. We even took on the psychiatrists, with their peculiar theory that ambitious or outspoken women were suffering from "penis envy."
Anybody here ever envied a penis? Wanted to be one?
Anyway, when I was diagnosed with breast cancer 2 years ago, I did what any veteran of the Women's Health Movement would do: I started researching, looking especially for support and information from other women who had the disease. I ordered a half dozen book, mostly women's accounts of their breast cancer experiences. I waded out into the net and found scores of breast cancer websites, which I nervously devoured. I was looking for tips, ways to survive the treatments, questions to ask the doctors, and of course emotional support-sisterhood. I was sure that I would find the Women's Health Movement alive and well and able to help me.
I found a lot. But what I found shocked me. Yes, I found useful tips and information, but I found something else-that a whole culture (I don't know what else to call it) has grown up around breast cancer. And it certainly did not contain the sisterhood I was searching for.
How to define breast cancer culture?
It's very pink and femme and frilly - all about pink ribbons, pink rhinestone pins, pink t-shirts and of course a lot about cosmetics. The American Cancer Society offers a program called "Look Good…Feel Better" which gives out free cosmetics to women undergoing breast cancer treatment. The Libby Ross Foundation gives breast cancer patients a free tote bag containing Estee Lauder body crème, a pink satin pillowcase, a set of Japanese cosmetics, and 2 rhinestone bracelets. And no one, so far as I could determine, was complaining about the strange idea that you can fight a potentially fatal disease with eyeliner and blush.
I found that the culture of breast cancer is highly commercialized. First, in the sense that many apparently grassroots fundraising efforts are in fact sponsored by large corporations eager to court middle-aged females. Among them: Revlon, Avon, Ford, Tiffany, Pier 1, Estee Lauder, Ralph Lauren, Lee Denim, Saks Fifth Avenue, JC Penney, Boston Market, Wilson athletic gear. Where were they, I wondered, when the Women's Health Movement was fighting for abortion rights and against involuntary sterilization?
More amazing to me though, was the number of breast cancer-related items you can buy today: You can dress entirely in a breast cancer-theme: pink-beribboned sweatshirts, denim shirts, pajamas, lingerie, aprons, loungewear, shoelaces and socks; accessorize with pink rhinestone broaches, angel pins, scarves, caps, earrings and bracelets.
You can decorate your home with breast cancer candles, coffee mugs, pendants, stained glass pink ribbon candle holders, wind chimes and nightlights. You can pay your bills with special "Breastchecks" or a separate line of "Checks for a Cure."
To me, the most disturbing product, though, was the breast cancer teddy bears. I have identified four distinct lines, or species, of these creatures, including "Carol," the Remembrance Bear; "Hope," the Breast Cancer Research Bear; the "Susan Bear," named for Nancy Brinker's deceased sister Susan; and the new Nick and Nora Wish Upon a Star Bear, available, along with the Susan Bear, at the Komen Foundation website's "marketplace."
BREAST CANCER ACTION
For years, a San Francisco Bay Area woman with breast cancer had been seeking information about the causes and treatment of her disease. She consistently encountered an unresponsive group of government agencies and other organizations who provided inadequate, superficial information, not hard data. She grew angry and shared that anger with other women who had metastatic breast cancer. In the summer of 1990, they formed Breast Cancer Action (BCA), a grassroots organization of breast cancer survivors and their supporters.
The woman’s name was Elenore Pred, and Breast Cancer Action, the organization she helped to found, now has concerned supporters around the country. BCA has received national media attention for being at the forefront of the breast cancer activist movement. Because of BCA and other advocacy organizations, the public has grown more aware of the grim statistics of the breast cancer epidemic.
For too many years, breast cancer was considered each woman’s private trauma instead of the national public health emergency it is. Elenore Pred and her colleagues refused to let that happen any longer. As Elenore said, “This is not an individual woman’s personal tragedy; it is a tragedy for all women and together we have the power to change things.” Since Elenore Pred’s death in October 1991, BCA has continued the work she began.
BCA is a grassroots group: ordinary people who, by educating themselves on the facts and the issues related to breast cancer, have empowered themselves and others to create needed change. BCA works with in coalition with other organizations to bring about important policy changes on the local, state and federal levels.
As a result of our visioning and strategic planning process, Breast Cancer Action has identified three strategic priority areas on which to focus our work.
Visit Breast Cancer Action at their website for more information: http://www.bcaction.org
- Advocating for more effective and less toxic breast cancer treatments by shifting the balance of power in the Food and Drug Administration away from the pharmaceutical industry and toward the public interest.
- Decreasing involuntary environmental exposures that put people at risk for breast cancer.
- Creating awareness that it is not just genes, but social injustices - political, economic, and racial inequities - that lead to disparities in breast cancer outcomes.
Now I don't own a teddy bear-haven't had much use for one in 50 years. Why would anyone assume that, faced with the most serious medical challenge of my life, I would need one now? And that wasn't all: The Libby Ross tote bag that I just mentioned also contained a package of crayons-something else I haven't needed in many a decade. I began to get the feeling that this breast cancer culture is not only about being pretty and femme-it's also about regressing back to being a little girl-a very good little girl in fact.
There is, I would point out, nothing similar for me. At least men who are diagnosed with prostate cancer are not given gifts of matchbox cars.
But the worst of it, for me, was the perkiness and relentless cheerfulness of the breast cancer culture. The "Breast Friends" site, for example, features a series of inspirational quotes: "Don't Cry over Anything that Can't Cry Over You," "I Can't Stop the Birds of Sorrow from Circling my Head, But I Can Stop Them from Building a Nest in My Hair," and much more of that ilk.
You don't find a lot of complaining in breast cancer culture. Sure, people acknowledge that breast cancer is a terrible experience in many ways-you'll lose a breast or 2, you'll go through chemo and lose your hair and your immune response, you might get lymphedema and lose the use of your arms.
But guess what? You would turn out a better person for it-more feminine, more spiritual, more evolved. You would be something better than a mere cancer-free person; you would be a "survivor." Some quotes:
As "Mary" reports, on the "Bosom Buds" message board:
I really believe I am a much more sensitive and thoughtful person now… I enjoy life so much more now and am much happier now.
Cindy Cherry, quoted in the Washington Post, goes further:
If I had to do it over, would I want breast cancer? Absolutely.
And I've heard even worse on the health channel: gushing descriptions of breast cancer as a form of spiritual upward mobility. Something that a woman should be happy to experience.
Is there any other disease that has been so warmly embraced by its victims? (And yes, I use the word "victim"-that's another part of the perkiness-the failure to acknowledge that some of us are in fact victims of a hideous disease.) No one thinks TB, AIDS, or heart disease is supposed to be a "growth opportunity" and make you into a better person. No one is thankful for colon cancer, diabetes or gonorrhea. Why, I began to wonder, is a disease that primarily attacks women supposed to be something they should be grateful for?
So when I went looking for the Women's Health Movement to sustain me in my breast cancer ordeal I found something very different. In the 70s we used to get angry and militant about women's health issues: we barged into medical meetings, picketed hospitals, showed up uninvited at Congressional hearings. In the case of breast cancer, all that fighting spirit had been transformed into…pink cotton candy.
As for my own mood a year ago, when I was undergoing treatment. It wasn't sweet or spiritual or "feminine" in the old fashioned sense. I was angry, as angry as I have ever been in my life. I wondered if it was possible to express this anger in the breast cancer culture I'd been exploring. So I wrote a letter and posted it on the message board run by the Komen Foundation, the largest of the breast cancer foundations. What I said was:
I was diagnosed 6 months ago and have been through a mastectomy and chemotherapy. I don't think of myself as a "survivor" because too many women have gone thru the same "treatments" only to have their cancers recur a few years later.
What I am is angry.
Angry about "treatments" which are in fact toxic and debilitating.
Angry about all the emphasis on "early detection" when there is no way of knowing how early any detection is. Some small tumors are very fast-growing and some big ones are very slow. But no one seems to be making the distinction.
Angry about insurance companies: I'm not battling cancer, I'm battling Aetna, which is still refusing to pay for the biopsy…And what about all people without insurance? (Bush wants to cut help for them in his next budget, and I don't hear anyone from the breast cancer groups screaming.)
Angry about all the sappy pink ribbons, breast cancer teddy bears and other cute accessories when the fact is WOMEN ARE DYING.
And finally, angry that with all the money pouring into research, no one knows what the cause of breast cancer is. If I want to protect my daughter, we need to know the CAUSE.
Anyone else out there sick of the breast cancer hype?"
That's what I wrote; that's what I was feeling at the time.
The responses I got were alarming. "Suzy" wrote to say "I really dislike saying you have a bad attitude towards all of this, but you do, and it's not going to help you in the least." Several women offered to pray for me to achieve a better state of mind.
"Kitty," however, thought I'd gone around the bend:
You need to run, not walk, to some counseling... Please, get yourself some help and I ask everyone on this site to pray for you so you can enjoy life to the fullest.
It was at this point that I realized that there is nothing feminist-and not much even sisterly-about the culture that has grown up around breast cancer. Because one of the first principles of second wave feminism was that you honor women's experience and respect their feelings. You don't tell a woman who's been raped or assaulted or subject to medical maltreatment to "cheer up" and stop whining. We thought there was something powerful and constructive about anger-I still think there is-because it was anger, more than anything, that made us into tireless activists for women's health.
But here I was-expressing my heartfelt feelings-and being told by other women who had been through similar experiences to shut up and put on a happy face. To be a "Stepford patient." I began to suspect that the purpose of the breast cancer culture-with it's teddy bears, and crayons and cosmetics and pinkness-is to get us to regress to a child-like state, to suspend critical judgment, and get us to accept whatever the medical profession wants to do to us.
Now of course there are-or have been-rationales for all the aspects of breast cancer culture I found so offensive:
Being cheerful is supposed to save year life. Everything depends on your attitude, I was told again and again by the books and websites I consulted. Anger and sorrow will kills you; being upbeat will save you. Having an upbeat culture of breast cancer survivors-with their public displays of energy and athleticism-is justified again and again as a way of getting women to come forward and have their mammograms. If women neglect their annual screenings, it must be because they are afraid that a diagnosis amounts to a death sentence. I was told by doctors and breast cancer establishment figures that beaming survivors, proudly running races and climbing mountains, are the best possible advertisement for routine screening mammograms, early detection, and the ensuing round of treatments. Trouble is: neither of these rationales holds up under close examination.
The idea that attitude can save your life was based on studies purporting to show that women who participate in breast cancer self-help groups are both happier and live longer than those who don't. More recent studies show that women in support groups may be happier, but they don't live any longer than the sourpusses and social isolates who don't go to groups.
I'm all for support groups-it's just that they don't count as form of treatment! And I'm all for being happy, but it won't save your life.
As for the need to have a highly visible, cheerful, breast cancer culture in order to get women to get "squished"-the Oct 20 issue of the Lancet carried a study of past studies of the effectiveness of screening mammography-a study showing that all the past studies were flawed and that mass mammography screening does nothing to lower a country's breast cancer mortality rate.
We haven't heard the last word on this, and the breast cancer establishment is scrambling to find some new evidence that mammograms are worth it. But for now: fact is, they don't seem to do much, as some doctors have suspected for a long time. Ten years ago, the famous British surgeon Michael Baum called routine screening mammography "one of the greatest deceptions perpetrated on the women of the western world."
In other words, the establishment breast cancer culture-represented by the races for the cure, the pink ribbons and teddy bears-rests on a paradigm that has been disproved and discredited.
We don't need to be cheerful. And we may not need to get those mammograms every year-which means we don't need all this breast cancer "awareness' that the corporations and the foundations are always encouraging.
So what does it hurt to have this massive breast cancer culture? You could say: whatever gets you through the night...
But there are at least 2 major problems with it:
First, the breast cancer culture has encouraged a dangerous complacency about current medical approaches to breast-cancer treatment. Implicit in all the pink ribbons and the drumbeat for regular mammograms was the promise that your cancer could be cured-if only you bring it to the doctors' attention early enough. In other words, there's nothing wrong with the so-called treatments-the burden is on you to get your tumor detected "early."
But as I wrote to the Komen message board: not all small tumors are "early" and more easily treated. In fact, there is no single disease "breast cancer"-probably a multitude of diseases of various degrees of virulence. But right now, they're all being treated as a single disease.
Worse, current treatments-surgery, chemotherapy and radiation-carry no guarantee of long-term survival and are notoriously debilitating and disfiguring themselves. Every year, more than 40,000 American women die of breast cancer, large numbers of whom had duly submitted to screening mammograms and to the nightmarish treatments that ensued.
Even mammograms are something to worry about: Only one carcinogen has been definitely established as a cause of breast cancer, and that is ionizing radiation of the kind emitted by mammography machines.
A second big problem with the pink ribbon culture: While they want a cure-we ALL do-they say almost nothing about the need to find the CAUSE of breast cancer, which is very likely environmental. This omission makes sense: breast cancer would hardly be the darling of corporate charities if its complexion changed from pink to green.
But by ignoring or underemphasizing the issue of environmental causes, the pink-ribbon crowd function as willing dupes of what could be called the Cancer Industrial Complex: by which I mean the multinational corporate enterprise which with the one hand doles out carcinogens and disease and, with the other, offers expensive, semi-toxic, pharmaceutical treatments. Breast Cancer Awareness month, for example, is sponsored by AstraZeneca (the manufacturer of Tamoxifen) which until 1999 was also the fourth largest producer of pesticides in the United States, including at least one known carcinogen.
So the more I immersed myself in the pink ribbon culture - during those awful months of chemo last year-the more disgusted I got. But I had one lifeline, one source of hope and genuine sisterhood: My cousin happened to send me three back issues of the Breast Cancer Action newsletter. I read them cover to cover, absorbing information, thrilled to find other women who had confronted the disease and managed to keep their wits about them and their dignity intact.
I am deeply grateful that Breast Cancer Action was there for me when I needed it most. It is one of the few voices of clarity and consistently feminist determination within the vast sea of pink ribbons out there, and I'm here to ask you-implore you, in fact-to help it not only survive but grow.
I know it can, because when I published my thoughts on the pink ribbon culture-in Harpers last October-I was deluged with letters from women saying: Thank god, somebody feels the same way I do! Here's a project I'd like to see BCA have the resources to launch: a website for women don't want teddy bears and ribbons, who want ACTION! I'd like to see an interactive website to connect these women to each other, because this is what I needed a year ago-not to mention probably for the rest of my life. I'd call it "bad girls of breast cancer"-like the BCA t-shirt. This is MY dream for BCA and I hope you'll help make it possible.
Because we don't need to be infantilized when we're dealing with a potentially fatal disease, we don't need to be patronized with cosmetics and jewelry, and told to keep smiling, no matter what.
We don't need more "awareness" of breast cancer-we're VERY aware, thank you very much. We need treatments that work, and above all, we need to know the cause of this killer, so we can stop it before it attacks another generation.
And we certainly don't need a breast cancer culture that, by downplaying the possible environmental causes of cancer, serves as an accomplice in global poisoning-normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.
What we need is a truly sisterly response to this ghastly disease-one that is both loving and militant, courageous and caring, willing to confront the Cancer Industrial Complex and, when necessary, the entire $16 billion a year breast cancer industry, including the medical profession.
Are you with me? Will you be with me if my cancer returns?
Good!-then this is the time to stand with BCA and give them what you can - your time, your talent, your money!