As many in the U.S. anticipate October ”going pink” for Breast Cancer Awareness Month, I’m honored to feature a guest post by Gayle A. Sulik MA, PhD, Research Associate at the University at Albany (SUNY) and founder of the Breast Cancer Consortium, an international partnership committed to energizing the scientific and public discourse about breast cancer and to promoting collaborative initiatives. She was a 2008 Fellow of the National Endowment for the Humanities and recently won the 2013 Sociologists for Women in Society Feminist Lecturer Award for her book, Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health (Oxford University Press).*

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I too used to secretly look forward to October, when I would drape myself in pride with all manner of garish pink, survivor-emblemed merchandise and take my place in the Survivors circle whilst bopping out to “We Are Family” or whatever the cheesy designated anthem was for that year, at one of the many breast cancer fundraising walks.

But I’m not doing it this year or ever again. It’s just a load of bollocks and a great excuse for companies to market their products to the well-meaning consumer in the guise of “Breast Cancer Awareness” when all it really boils down to is profiteering at the expense of real people really suffering and really dying from this insidious disease.

— Rachel Cheetham Moro,
The Cancer Culture Chronicles, Sep. 19, 2009

Rachel Cheetham Moro used to write a lot about the bollocks of breast cancer on her blog, The Cancer Culture Chronicles, which she published from June 2009 until her death, from metastatic breast cancer, in February 2012.

Though Rachel’s blog posts covered an array of topics about her experiences with breast cancer and the curiosities of pink ribbon culture, she was particularly savvy in her descriptions of the pink-themed marketplace where strength, hope and courage come in the form of t-shirts, chocolates, figurines, and narratives of idealized survivorship. With snark-filled accuracy, Rachel catalogued how merchandisers blithely use the widespread desire for cure(s) to lull well meaning supporters into a state of consumptive bliss. Shopping for a cure never felt so good. If only “cure” were part of the transaction.

As a woman living with terminal cancer, Rachel knew that a “cure” for breast cancer was a figment of the collective imagination. Not only for her, but for all of those living with metastasis (when cancer spreads to distant organs of the body). Rachel had been diagnosed with breast cancer on three separate occasions. She had the typical array of treatments and brief periods of remission, but the third diagnosis changed everything. There was no cure. There would be no cure. It was simply (and complicatedly) a matter of living with breast cancer until dying from breast cancer.

There are rare cases of people with metastasis who live twenty years, and no one knows which statistics will apply to them in the end. But the truth of the matter, which Rachel knew to her core, was that she would not survive this disease. What’s more, the treatments that were geared toward keeping her cancer at bay ended up damaging nerves, organs, and limbs until she had difficulty managing routine aspects of life. Walking, eating, cooking, typing, breathing. Activities many of us take for granted became everyday obstacles.

None of this stopped Rachel. She kept doing what she could. At the age of 41, she managed to retrofit her house to accommodate a limited range of motion and the inability to use her dominant arm. She cooked one-handed, henpecked her keyboard and, prepared for a day when she might be able to drive again, had hand controls installed in her vehicle. Rachel learned how to live life within the continually narrowing confines of patient-hood.

And it was patient-hood NOT survivorship that framed Rachel’s life. “I’m a cancer patient, Gayle. It’s what I do now. I spend hours in waiting rooms and chemo-chairs, hours on the phone to manage my health care, hours doing things that used to take me minutes. Being a cancer patient has become a job. It’s become my life. I don’t want it to be, but I don’t have a choice.”

During one of my visits with Rachel, I took her to a chemotherapy session. On the way home she directed me to a steep and narrow road that snaked in and around the Highlands of New Jersey. We ended up at a property nestled in the hills overlooking the Atlantic Ocean. Rachel wanted me to see her “dream house.” There it was. She had grown up near the ocean in Perth, Australia. Sand and saltwater were in her blood. Rachel smiled when we drove up to the house. Then she told me the truth. This was a pretend dream house. “The devastation of cancer,” she said, “is that it not only takes your life, it steals your dreams.” Then in a matter-of-fact tone Rachel repeated the statement. “That’s what cancer does, Gayle, it steals your dreams.”

I went silent. A sense of dread was a dead weight around my heart. They were my dreams too. Not the house by the ocean. The dream of having Rachel in my life.

For Rachel and me, our time together had been a full but short 16 months. We didn’t find each other until October 2010 when she emailed me after reading my book, “Pink Ribbon Blues.” We became fast friends and collaborators. Rachel was a rabble-rouser, an activist — a soul sister who got what I was about. She believed as strongly as I did that pink hype was not the answer to the breast cancer problem. It was in fact getting in the way. Profit motives and branding priorities led to a distortion of medical information, the misallocation of funds, and an overall misrepresentation of the disease, especially for those who were dying from it. These truths, which rarely made the headlines, infuriated both of us. We were committed to change. This reality swirled around in my head in that brief moment of silence.

Then I asked Rachel, “What gets you through the day if you no longer have your dreams?” Without pause she said, “You.” “You do, Gayle. And my beloved…and Sarah… my cyber-sisters…Newman [Rachel's dog]…and screaming about this pink hypocrisy. It’s going to change, Gayle. The walls are going to tumble down. It’s just a matter of time.”

I left New Jersey after a few days and returned to Texas. We continued our work via email, phone, Skype, and other social media. Ten weeks later Rachel was in the hospital. Cancer had made its way to her spine, and her brain. It was the same week Susan G. Komen for the Cure announced its now infamous decision to stop giving grants to Planned Parenthood. The same week I was in Florida for an academic conference. As I learned what was happening to Rachel, the Komen story began to unfold.

Komen’s deceptions, misrepresentations, abuses of the public trust, and failures of corporate governance surrounding the Planned Parenthood scandal opened a proverbial can of worms. New investigations surfaced about Komen’s revenues and budget allocations, branding initiatives, questionable corporate partnerships, legal actions against other smaller nonprofits, distortions of scientific data, and long-standing partisan bias. None of this was surprising to those of us who had been working to reveal Komen’s shenanigans long before the Planned Parenthood debacle stirred the public interest. But it was news to many others. Normally Rachel and I would have been sending rapid-fire messages about each new public reveal, in constant communication with the “cancer rebels” to spur social commentary. Not this time.

There was a startling silence as Rachel went in and out of consciousness, her voice missing from one of the most crucial and catalytic public debates to date about Komen’s role in the breast cancer industry. I sent her messages. Reported updates. Did Rachel know that Komen’s true colors were finally coming to light? That her personal efforts to reveal the truth about breast cancer were having an impact? Her beloved Anthony assured me that she did.

My partner in activism died on February 6^th, 2012. I hope that Rachel was right, that it’s only a matter of time until those pink walls come tumbling down. Maybe then, there will be a chance of getting closer to that elusive cure.

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*The 2012 edition includes a new Introduction about the Komen for the Cure/Planned Parenthood controversy and a color insert of images of, and reactions to, the pinking of breast cancer. For more information please visit Gayle Sulik’s website at gaylesulik.com and her blog at pinkribbonblues.org.

** Rachel Cheetham Moro’s blog, The Cancer Culture Chronicles, has been compiled and edited by her mother Mandy Cheetham and her friend Sarah Horton. The book contains all of Rachel’s blog posts in their entirety, with notes, resources and tributes. Available in October 2012, this is a 5×8 hardback book, 384 pages and available at cost from Blurb.com, price $30.95 (£21.50) plus shipping.

Today’s extra edition of the monthly “Bedside Manners” column features a follow-up post from one of our past guest authors: Chloe E. Bird is a senior sociologist at the nonprofit, nonpartisan RAND Corporation and co-author of Gender and Health: The Effects of Constrained Choices and Social Policies (Cambridge University Press).

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In light of the current debate over women’s reproductive rights and care, it is increasingly clear that the benefits of the Patient Protection and Affordable Care Act (ACA) for access to comprehensive health care will not accrue equally to women across the country. Simply put: There is more agreement on what must be included in comprehensive health care for men than on whether and to what extent contraceptive and reproductive services must be included in comprehensive health care for women.

While it has long been recognized that comprehensive care for men includes sexual and reproductive health, the same has not been true for women. For example, women’s health insurance plans have typically allowed exclusions in this area even for pregnancy, and even when it is not a “preexisting condition”; indeed, there are no comparable accepted options for excluding entire aspects of health care for men while providing them for women.

Yet although the ACA assures women access to primary care and many reproductive services without copays, the debate over reproductive services continues. Recent political discussions on access have typically not included discussion of increases in women’s education, employment and career continuity attributable to contraception.

In the context of this debate, the Timely Access to Birth Control bill (AB 2348), which has been approved by the state legislature and is now awaiting Governor Brown’s signature, may appear to some to be a luxury that California can ill afford. But the reality is that over the mid to long run, AB 2348 would very likely save the state a significant amount of money. The bill allows registered nurses to dispense highly reliable hormonal contraceptives, including the pill. If enacted, doctors and nurse practitioners would be freed up to focus on more complex patient visits. If passed, the bill would increase women’s access to reliable contraceptives and reduce the costs of delivering that care.

In a Mother’s Day piece for Ms. Magazine Online, I pointed to the savings contraception generates for employers, insurers, and taxpayers. A public dollar invested in contraception saves roughly four dollars in Medicaid expenditures—or $5.1 billion in 2008—not to mention the broader health, social and economic benefits. Moreover, a 2010 study in California of a Medicaid family planning program found that every dollar spent saved the public sector over nine dollars (PDF) in averted costs for public health and welfare over five years. Rather than getting caught up in the national political debate over reproductive health coverage, California legislators should consider the significant cost savings as well as the social and economic benefits of improving timely access to reliable contraception.

On the national front, the goal of the ACA is to expand access to healthcare for Americans, especially those who currently lack health insurance; but the law also prioritizes improvements in the quality of care and reductions in costs. As we look for ways to provide efficient, high-quality, and cost-effective health care to more Americans, we can’t afford to ignore women’s health issues, including reproductive health care and the cost savings that contraceptive access provides.

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Cross-posted with the author’s permission from RAND’s blog

Recent events inspired this guest post authored by sociologist Michael Kimmel, author of Guyland: The Perilous World Where Boys Become Men, The Guy’s Guide to Feminism, and Manhood in America. Kimmel teaches sociology at SUNY Stony Brook and is one of the most influential researchers and writers on topics of men and masculinities . Reprinted with Kimmel’s permission from today’s Huffington Post, the author calls out not only Todd Akin but also Daniel Tosh for their recent misogynistic actions, as well as offers readers a larger critique of how rape is discussed in our culture.

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You have to pinch yourself sometimes to remind yourself that it’s 2012 and we still don’t know how to talk about rape in this country. Who would have thought that after half a century of feminist activism — and millennia of trying to understand the horrifying personal trauma of rape — we’d be discussing it as if we hadn’t a clue.

Okay, that’s a not quite true. When I say “we” — as in “we haven’t a clue” — that’s a little vague. So let me clarify. When I say “we,” I mean the half of the population to which I happen to belong. My gender. Men. Just consider the gender of each of these recent examples:

• In recent days, we’ve had a U.S. Congressman candidate draw distinctions that are so mind-numbingly wrongheaded and so politically reprehensible that even his own party is calling for him to drop out of his U.S. Senate race (where he is leading);

• In recent weeks, we’ve had one of the more curious debates about whether rape jokes can be funny;

• And over the past couple of years, the word “rape” has entered our vocabulary as a metaphor.

Each one reveals a fundamental misunderstanding about the singular horror of rape.

Todd Akin and “legitimate rape”

In trying to explain his opposition to abortion — even in cases of rape — Rep. Todd Akin observed that victims of “legitimate rape” cannot get pregnant because their bodies will shut down and prevent the sperm from fertilizing her egg. That is, he seems to believe that women’s bodies have a kind of magical, or God-given, ability to distinguish lovers’ sperm from rapists’ sperm, and to “know” which ones should be allowed to fertilize the egg.

Of course, this reveals a spectacular ignorance of women’s bodies — but what else did you expect from a right-wing anti-woman legislator? (The fertility rate for rape victims is exactly the same 5 percent that it is for women who have consensual sex.) But what is so offensive is less what he says about women’s bodies, and more what it implies about rape in the first place. By drawing attention to “legitimate” rape, Akin implies that “other” rapes are not legitimate — i.e., not rapes at all. Legitimate rapes are the equivalent of what others call “real” rape — a stranger, using force, preferably with a weapon, surprises the victim. All “other” rapes — like date rape, marital rape, acquaintance rape, child rape, systematic rape by soldiers, rape as a form of ethnic cleansing (where the actual purpose is to impregnate) — aren’t really rapes at all. This would exclude, what, about 95 percent of all rapes worldwide?

By linking the criteria for labeling some assault as rape to the possibility of pregnancy, Akin in effect blames impregnated women’s bodies for failing to slam that cervix door shut on those illegitimate sperm. Their bodies having failed them, why, then, he asks, should the state sanction a “murder” (abortion) that their own bodies didn’t sanction? This isn’t just lunacy on the scale ofMonty Python’s famous inquiry into the identity of witches, it’s a consistent ideological position against women’s conscious and deliberate ability to make conscious decisions about her body. The body speaks; women’s voices are silenced.

Rape as Humor

Last month, the comedian Daniel Tosh attempted to silence a heckler at the Laugh Factory, saying, “Wouldn’t it be funny if that girl got raped by, like, five guys right now? Like right now?” This has been a standard theme at comedy clubs for a while now. Hordes of fellow comedians jumped in to defend Tosh. Comedy, they argued, is designed to push the envelope, to make really tragic and horrible things funny.

Such claims are, of course, disingenuous. Have you heard the German comedian’s “Two Jews walk into a bar” joke? Neither have I. How about the racist comedian joke about lynching? Only on White Supremacist websites (and never in a public club). The question isn’t whether or not rape jokes “push the envelope.” It’s which envelope it’s pushing, and in which direction.

Humor has often been a weapon of the weak, a way for those who are marginalized to get even with those who are in power. This is the standard explanation for the large number of Jewish and black comedians. And their takedowns of the rich, white, Christian are seen as evening the score: “they” get all the power and wealth, and we get to make fun of them.

But when the powerful make fun of the less powerful, the tables are not turned; inequality is magnified. While it’s still not acceptable for white comedians to use racist humor (and when they do, they are instantly sanctioned, as was Michael Richards), but it’s suddenly open season on women and gay people. Ask Tracy Morgan.

In a sense, though, Tosh’s casual misogyny offered a rare glimpse inside the male-supremacist mind. Tosh doesn’t defend rape as just a “date gone wrong” or a “girl who changed her mind afterwards,” equally vile and pernicious framings. No, he is clear: rape is punishment. Punishment for what? For heckling him. That is: for having a voice.

Rape as Metaphor

Recently, my adolescent son told me he’s started hearing the word “rape: as a synonym for defeating your opponent badly in sports, or besting them in a rap competition. As in, “The Yankees raped the Red Sox” or, “Dude, that guy totally raped you” in the high school debate.

Using rape as a metaphor dilutes its power, distracts us from the specificity of the actual act. You got raped? Me too! I totally got raped in that math quiz.

In an interview some years ago, Elie Wiesel cringed at the use of the word “Holocaust” as a metaphor for hatred, or for murder in general. This was not hatred, not just murder, Wiesel argues.

“Hate means a pogrom, it’s an explosion, but during the War it was scientific, it was a kind of industry. They had industries and all they produced was death. Had there been hate, the laboratories would have exploded.”

Wiesel made clear that it’s not a metaphor: it is in its specificity that its power resides.

Rape is not a verbal put-down; it’s a corporeal invasion. It’s not an athletic defeat; it’s the violation of a body’s integrity, the death of a self. All equivalences are false equivalences.

It’s not a metaphor, it’s not a joke, and it’s not to be parsed as legitimate. It’s an individual act of violence. To believe that you can change the meaning of a word by turning it into a metaphor or a joke is the essence of male entitlement. It is an act of silencing, both the individual and all women. The arrogance of turning it into a metaphor, making it a joke — this is how that silencing happens.

And the good news — if any is to be taken here — is, of course, that it hasn’t worked. Women have responded, noisily and angrily, to these efforts at silencing.

Maybe “we” ought to shut up and just listen?

I’m happy to bring you this guest post co-authored by two researchers at the nonprofit, nonpartisan RAND Corporation: Chloe E. Bird, senior sociologist and co-author of Gender and Health: The Effects of Constrained Choices and Social Policies (Cambridge University Press, 2008), and Tamara Dubowitz, policy researcher. In this post they discuss recent studies which examine the impact of neighborhood environments on health and health disparities.

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If you had good options about what to eat but made bad choices and became obese, then the fault would be yours. But, what happens when you don’t have good options?

That’s the problem in America today – being overweight is not all your fault. You don’t make the decisions to put transfats, high-fructose corn syrup and excess salt in your food, or unhealthy snacks in the vending machine at work. You don’t dictate that the equivalent of 54 sugar cubes get put into an extra-large soda. These are so-called constrained choices – ones you don’t get to make. Yet, you live with the consequences.

We believe it is time to consider who determines the options for us and what can be done to put better ones on the table. We can’t all afford to buy only organic foods or even have access to them. And, we probably don’t make it a pastime to follow the latest research on nutrition. But, we can take a moment to think before we order a second soda.

And, we can choose to call on those who determine the options to shoulder part of the responsibility for America’s obesity epidemic and to stop the name-calling – like labeling medical researchers “food nannies” when they ask restaurants to deliver sensible portions, priced right. We need to hold vending-machine companies and their managers to account if they stock only junk food in those little compartments.

Consider a few statistics. The latest figures indicate that two of three adults and one of three children and adolescents in the United States are overweight or obese. The impending health and economic consequences are staggering. According to the Institute of Medicine, the medical costs alone of obesity-related diseases and disabilities exceed $190 billion a year. These costs comprise more than 20 percent of national health care spending. The number keeps rising. Want your health care costs to spike further? Then, keep eating the constrained choices that are not healthy.

RAND research, using data from the Women’s Health Initiative study, found that living where there is a higher density of fast food outlets is associated with higher blood pressure and risk of obesity; while, a greater density of grocery stores is associated with lower blood pressure and lower risk of obesity. These relationships hold even after taking into account women’s characteristics and socioeconomic status of their residential neighborhoods. In other words, where you live can affect your weight and your health.

Moreover, another recent RAND study found that 96% of main entrées at all restaurants studied—including delivery, family style, upscale, fast food, buffet, and fast casual—exceed the daily limits for calories, fat, saturated fat, and sodium recommended by the U.S. Department of Agriculture.

Policy approaches to reduce obesity are not magic bullets. If we want to reverse the obesity epidemic, then we need environments which assure that we have good food options and the opportunity to choose them.

We will be more successful at stemming the growing tide of obesity and improving our own health if everyone accepts their share of responsibility for the obesity epidemic. We need to ask our favorite restaurants, the food vendors near where we work, even grocery stores to give us better options. We can always ignore them, if we wish, but then that’s our choice. Right now, too many bad choices are being made for us.

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Cross-posted on RAND’s blog

On this historic day, the US Supreme Court’s ruling on health care is being hailed as “a victory for all Americans” – but will all Americans benefit equally from the new health care law signed into law by President Barack Obama? No, not those, like Obama, who are male.

The ACA’s list of “Covered Preventive Services for Adults” includes screenings for only two sexually transmitted infections (STIs): “HIV screening for all adults at higher risk” and “Syphilis screening for all adults at higher risk.” They do include “Sexually Transmitted Infection (STI) prevention counseling for adults at higher risk,” and “Immunization” for the STIs Hepatitis B, Herpes and Human Papillomavirus (HPV). All sexually active boys and men are potentially at risk for contracting a wide range of STIs, including HIV: the interpretation of “higher risk” could keep many from receiving necessary care.

If you scroll down this page, you’ll find the longer list of “Covered Preventive Services for Women” which includes additional sexual and reproductive health care screenings related to breast cancer, cervical cancer, chlamydia, contraception, gonorrhea, plus extra screenings HIV and HPV. This laudable list is capped off by “Well-woman visits” described as, “preventive care visit annually for adult women to obtain the recommended preventive services that are age and developmentally appropriate….” Why would a man not benefit from these types of services?

A google search for “well-man visits” turns up nothing on U.S. government websites and only one company’s description of their “Well Man Examination” policy: it includes only “Digital rectal exam; and Screening PSA test (age 40 or older).” Younger men could benefit from an examination for testicular cancer, “the most common cancer in American males between the ages of 15 and 34.” None of these tests are mandated under the ACA.

Looking again at government resources, the inequity jarring. In addition to having a website devoted to National Women’s Health Week in May, the U.S. Department of Health and Human Services also sponsors an Office on Women’s Health website. If you’re on the homepage of the U.S. Department of Health and Human Services and search for “men’s health” you will not find a men’s health website. However, their Office on Women’s Health website (somewhat ironically) features the U.S. government’s only resource webpage for men’s health, including a link to men’s sexual health. On this page, it focuses more on aging and sexual dysfunction, with only one small link to sexually transmitted infections. This “sexual health” page seems to patronize and condescend to men, doubting their abilities to care about and seek sexual health care:

“Sexual health is a source of concern for many men. Yet some men are not comfortable talking to their doctors about sex.” And, later on, “Remember that problems with sexual health are medical problems, and your doctor can help.”

If you live in King County, WA, then you might be in luck: their Public Health website features a fairly detailed description of “physical examinations for men.” If you don’t feel comfortable seeking these examinations from your regular doctor, then check out Planned Parenthood: a national organization that provides men’s sexual health exams. While I’m not sure how many U.S. teen boys and men would think of Planned Parenthood clinics as their home base for sexual health care, U.S. health policymakers should look to them for guidance. Depending on the specific PP clinic, their services might include:

• checkups for reproductive or sexual health problems
• colon cancer screening
• erectile dysfunction services, including education, exams, treatment, and referral
• jock itch exam and treatment
• male infertility screening and referral
• premature ejaculation services, including education, exams, treatment, and referral
• routine physical exams
• testicular cancer screenings
• prostate cancer screenings
• urinary tract infections testing and treatment
• vasectomy

U.S. men, where is your outrage? Where are the protests demanding equality in sexual and reproductive health services? Why is there no U.S. Office on Men’s Health? A little digging online unearthed the failed “Men’s Health Act of 2001” which articulated the need for an Office of Men’s Health. If this act is not a priority for today’s politicians, then I encourage you to do your part to raise awareness about the need for accessible, affordable and comprehensive men’s sexual and reproductive health care. All of us — men, women and children — will benefit from better men’s sexual health.