Rose Kushner: breast cancer activism pioneer
If you’ve noticed that we seem to be awash in a sea of pink ribbons and ads for pink products these days, you probably realize that it’s National Breast Cancer Awareness Month. Not surprisingly, given our prominence as feminist leaders (and the higher incidence of breast cancer among women of Ashkenazi descent), Jewish women have played leading roles in breast cancer activism. The public attention to breast cancer today is largely due to the pioneering activism of journalist Rose Kushner (1929-1990).
When she found a lump in her breast in June 1974, Kushner used her journalism skills to help her deal with her illness and educated herself about breast cancer. Based on her extensive research, Kushner determined that she did not want to have the standard treatments. Rather than a one-step biopsy and mastectomy, she insisted that she wanted to receive the results of her biopsy and then make decisions about her treatment in consultation with specialists. Although this request now hardly sounds radical, in 1974 Kushner had a difficult time finding a surgeon who would agree to her terms – 19 turned her down! Kushner also wanted a modified radical mastectomy, rather than the more debilitating standard Halstead radical mastectomy – and had to travel from her home in Maryland to Buffalo, NY, to find a doctor willing to perform the surgery.
During her recuperation, Kushner began to transform her personal tragedy into a professional calling. Realizing that not all women with breast cancer had access to the resources she did, she wrote articles about breast cancer and the controversies surrounding its treatment. She also traveled to Europe to study breast cancer treatments there. Kushner compiled her research in Breast Cancer: A Personal History and Investigative Report, which she first published in 1975.
Kushner quickly became a leading public educator on breast cancer. She founded a non-profit referral and information service, the Breast Cancer Advisory Center, and was also called to testify before Congress on numerous health and cancer topics. Kushner played an important role in making breast cancer a political issue, pushing for legislation that would give women choice in biopsy procedure, mandate informed consent, offer coverage of annual mammography by Medicare, regulate the use of radiation in mammograms, and make more money available for breast cancer research. In June 1977, Kushner was the only non-physician appointed to a National Institutes of Health (NIH) panel, which adopted her recommendation to make the two-stage biopsy standard procedure. Her work also played an important role in changing the accepted protocol from the Halstead radical mastectomy to the less extensive modified radical.
In June 1982, Kushner discovered a recurrence of her cancer. She continued to devote herself to breast cancer activism, speaking out against aggressive chemotherapy, serving on President Carter’s National Cancer Advisory Board, and helping to found the National Alliance of Breast Cancer Organizations. Despite her fierce will and determined activism on behalf of breast cancer patients, Rose Kushner died of the disease on January 7, 1990.
The breast cancer movement has changed and grown since Kushner’s death, becoming more mainstream and attracting much corporate interest (for an interesting perspective on the corporatization of breast cancer activism, check out the Think before you Pink campaign by Breast Cancer Action). Kushner’s name has been largely forgotten in the sea of pink ribbons, but she remains an important model of how one individual used her own experience to create widespread policy change and a political framework for women’s health activism.
What can we do as Jewish women to carry forward Kushner’s legacy in raising breast cancer awareness?
To the people that donÌ¢âÂã¢t think these Ì¢âÂÒpink promotionsÌ¢âÂå are doing any good for breast cancer: I agree with you that breast cancer is being employed as a cheap means of gaining sympathy and is used by most companies as nothing more than a marketing strategy for their other crap products (a lot like selling promotional items at a loss, except most places are actually making profits off of these Ì¢âÂÒcharityÌ¢âÂå promotions). I used to denounce these companies, too, but the reality is that most people have no interest/desire to care about breast cancer research unless they or someone close to them has suffered from it. IÌ¢âÂã¢d probably be guilty of the same thingÌ¢âÂå_ the only reason I even found this page is because I was searching for info about complications I had from a removal of a malignant node (you can see for yourself what happenedÌ¢âÂå_ bad breast reconstruction pics, but make sure you didnÌ¢âÂã¢t just eat). As shady as these companies are, with most giving maybe a penny to actual breast cancer research off of every pink nic nac they sell, the reality is that their Ì¢âÂÒcontribution,Ì¢âÂå as disingenuous as it is, is better than nothing at all. If it wasnÌ¢âÂã¢t for greedy, shady corporations trying to exploit pplÌ¢âÂã¢s emotions, I donÌ¢âÂã¢t see any other way that we can raise awareness and garner support for this cause. And letÌ¢âÂã¢s face it, interest groups donÌ¢âÂã¢t work when the only money coming in is from the small group of ppl that are actually motivated enough to join. People just simply donÌ¢âÂã¢t care unless itÌ¢âÂã¢s affecting them directlyÌ¢âÂå_
If youÌ¢âÂã¢ve had breast cancer and even if you havenÌ¢âÂã¢t, itÌ¢âÂã¢s worth checking out Cancer Made Me a Shallower Person, A Memoir in Comics, by Miriam Engelberg. My girlfriend bought it for me one day when we came upon it in a bookstore. The comic book made me belly laugh about my own experience with breast cancer. Until then, I hadnÌ¢âÂã¢t run into anyone who could really hit my funny bone on this grizzly topic. Engelberg tells it like it is. Her comic vignettes lighten up the toughest of issuesÌ¢âÂÛshe got me giggling about the weird way people act towards those of us who have breast cancer, about the feeling that the universe has plotted against me to give me this disease, and my worry that the disease was my own fault. SheÌ¢âÂã¢s funny about the most common day-to-day interactions and worst days of chemo and radiation.
Although I havenÌ¢âÂã¢t found anything in her writing that explicitly identifies her as a Jew, my guess is Engelberg was Jewish. In addition to her Jewish-sounding name, she had the wit, courage, purpose, and relish for life that so many Jewish women have.
Sadly, as I cruised the internet this morning to find out more about her, I found that she died just a week ago, on October 17th. What a loss.
Usually, when I hear of a woman who dies of breast cancer, I not only feel sad, I feel terror at the thought that I might not make it. But even before I was diagnosed with breast cancer six years ago, I was deeply fearful of the disease. I think many women privately are terrified about getting breast cancer. That, in itself, is part of the battle against breast cancer that we all face as women.
The media usually focuses on women who die from this disease. That focus of attention doesnÌ¢âÂã¢t line up with the reality. The majority of women who get breast cancer are alive and kicking. I am amongst the many breast cancer survivors who are living fabulous lives. Since the 90Ì¢âÂã¢s, the survival rates for breast cancer are steadily rising and researchers predict the rate will to continue to rise. Girl friends, take heart.
So today, even though I am sad to lose Miriam Engelberg, I donÌ¢âÂã¢t feel terrified. Maybe itÌ¢âÂã¢s partly the laughter that Engelberg gave to me, which has helped me continue to heal from this temporarily cataclysmic experience and which helps me feel more confident in the future. Thank you, Miriam.
On Monday, October 23, 2006, at 9;00p.m. (EDT), Lifetime Television will be presenting an original movie, "Why I Wore Lipstick to My Mastectomy."
The movie is based on a true memoir, written by Geralyn, a woman diagnosed with breast cancer at age 27.
The mission of the movie is best summed up by Geralyn herself, who writes:
When I was diagnosed with breast cancer, I promised I would share my story with other women to help take away the fear of breast cancer and encourage them ro get checked. I hope this Lifetime Original movie based on my book gives you the motivation to be proactive about your health. Although it is "my" story, it is all of ours. Please share your story with your family and friends. The more we can talk about it, the more we can take away the fear. And remember, live up to your lipstick!
The movie stars Sarah Chalk (of Scrubs fame), Jay Harrington (of Desperate Housewives fame), and Philadelphia singer Patti Labelle.
In addition, the movie also features a previously unreleased version of the song, "I Am Not My Hair," performed by Grammy Award-winning artists India Arie and Pink.
Geralyn will also be appearing.
I do not know if Geralyn is Jewish, but that should not matter. What does matter is the message, and the importance of young women with breast cancer refusing to give into the fear, encouraging them to be checked, and knowng that there are support groups for them, e.g. Young Survival Coalition, and breastcancer.org.
*Young Survival Coalition is a non profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. Its mission is to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women 40 years of age and younger, as well as to serve as a point of contact for young women living with breast cancer.
*breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete and up-to-date information about breast cancer, to help women and their families make sense of the complex medical and personal information about breast cancer, so that they can make informed decisions about their lives.
When Rose Rehert Kushner and I were four and five years old in Baltimore, Maryland, we were neighbors and friends. Many years later, I read her book and articles concerning breast cancer, not realizing that I would also become entangled in the cancer of the breast. In 1989, I felt a lump in my left breast. and to my dismay discovered that the cancer had been misdiagosed two years previously. The mammogram had been misread. Despite errors, noncern, and arrogance displayed by my physicians and HMO, I finally came under the care and capability of a veteran accomplished breast surgeon.
Following chemo and radiation treatments, I "found" myself -- not my old self, of course. I volunteered to speak before high school students, utilize publicity, and generally assist in Hadassah's "Check It Out" successful breast cancer awareness program. My manuscript -- part verse, part prose -- "Down Mammary Lane or I'd Rather Have My Ears Pierced" has not yet been published, but I have quoted from it before audiences.
Yes, in the long run, Rose Kushner and I shared more than child's play.
I would encourage Jewish women whose sisters had breast cancer to join the Sister Study. The goal: to find the causes of breast cancer. Go to www.sisterstudy.org to find more info and enroll.