University: University of Alabama at Birmingham
Website: Blog: http://cancerhitsthestreets.wordpress.com/
Description of Work:
I became interested in the ways in which medical systems construct narratives of the illness experience when I became a patient of breast cancer in 1993. As I’ve grown as a scholar and as a survivor these past 20 years, I’ve discovered a wealth of disciplinary opportunities and cultural perspectives that have enriched my work. I’d argue that anyone who identifies as a rhetorician is, by default, a maker of discourses through which health is understood and a co-creator of practices.
Several of my current and ongoing research interests reinforce the notion of medical rhetoricians as meaning makers (as opposed to mere observers or critics of discourse).
Homeless with Cancer
Since 2009, I have worked firsthand with homeless cancer survivors in my adopted city of Birmingham, Alabama. My research within this population has focused on obstacles to healthcare alongside an examination of the illness narratives homeless survivors construct.
In conjunction with this work, in 2010, I founded Street Smarts™, an annual breast cancer education program for homeless women. Organized and facilitated with the assistance of homeless survivors, Street Smarts™ provides breast health information in a spa environment. Participants are pampered, fed, and encouraged to care for their bodies in ways that are realistic and attainable given their day-to-day circumstances.
Cancer in Cross-Cultural Context
I have also pursued several projects involving medical institutions and cancer survivors around the globe. In 2008, I investigated medical tourism in the southern region of Tamil Nadu, India. In 2010, my research took me to Zambia, Africa, where I examined the development of modified cervical cancer care prevention programs to reach women living in poverty. In 2011, I considered the obstacles faced by cancer survivors and their families in Kathmandu, Nepal, and in 2013, I am returning to India (this time to Gujarat and Rajasthan) to interview women who are collaborating with NGOs to set fair market prices for their traditional labor and handicrafts, in the process creating opportunities for health care, insurance, savings collectives, etc.
Through these projects and others, I have pursued publication outlets that reach an audience beyond academia. My work has appeared in popular newspapers (e.g., USA Today, Chicago Tribune) and national magazines (e.g., Cancer Today). Most recently, I have begun to work with fashion photographer David Jay (www.thescarproject.com) to document the lives of young cancer survivors in Birmingham, Alabama, as well as those living throughout the Black Belt, who lack health insurance (see, for example, the story “Forever Young”: http://cancertodaymag.org/Spring2013/Pages/Young-adult-breast-cancer-survivors-photo-essay.aspx).
My overarching goal in all of the work I pursue is to use my knowledge and skills as a trained rhetorician and breast cancer survivor to bridge the experiences of several different communities. It is in the “doing” of medical rhetoric that I think we have the greatest opportunity to shift discourses that are sometimes marginalizing and almost always incomplete.
The Advocate’s Dilemma: Negotiating Science and Simplicity in Public Health Messages
Public health advocates negotiate the interests of many, including lay audiences, health care practitioners, and medical researchers. By communicating information about the current state of medical knowledge while measuring the unique health practices and challenges of a particular population, advocates routinely make rhetorical decisions about message content and delivery most likely to influence positively the public’s beliefs and behaviors.
As the prevailing paradigm in the West, biomedicine’s privileging of the clinician’s gaze has historically affected the availability of medical information and societal expectations for dissemination of this information to the public, as well as the possibilities for consumption of these details (see, for example, Higashi, et al., 2013). In the current era of increased open access for many, if not all, citizens, the gatekeeping function of medical authority has undeniably shifted, though experts debate whether this shift has proven helpful in informing decision-making by public audiences or simply furthered confusion about how to assess and prioritize source credibility (Zhang, 2014).
As a breast cancer survivor-advocate for more than 20 years, I am invested in the shape of informative messages about the disease that are conveyed to the public. The breast cancer awareness movement that began in the 1970s was monumental thanks to the willingness of survivors like First Lady Betty Ford, actress Shirley Temple Black, author Audre Lorde (writing in the early 1980s about her experiences as a Black, lesbian breast cancer survivor), and journalists Betty Rollin and Rose Kushner to share intimate details about the physical and emotional toll of breast cancer despite the secrecy that had accompanied the disease for centuries. Their contributions delved into the unspeakable: the ways in which treatment for breast cancer affects a woman’s self-image and sexuality, the sense among survivors that they were shut out of the decision-making process regarding their own bodies, and the broader marginalization of women’s identities and voices in medical institutions. Their words also took flight, as routine practices like performing both a breast biopsy and a mastectomy for cancerous tumors in a single operation were challenged and changed.
Unfortunately, and ironically, the movement too quickly lost much of its rigor (Ryan, 2014).
The pink ribbon crusade devised in 1991 by then editor-in-chief of Self magazine, Alexandra Penney, in concert with special guest editor/cosmetics maven, Evelyn Lauder, and carried forth by numerous fashion icons like Ralph Lauren and organizations like The Komen Foundation, effectively reduced the complexities of a breast cancer diagnosis at the same time increased awareness fueled research into those complexities. Messages about breast cancer in the mainstream media leaned towards simplified slogans, for example, “Early detection is the best protection,” even while scientists were discovering the diversity of breast cancer etiologies, each distinctive in its pattern of growth, level of aggressiveness, detectability via traditional screening methods, and demographics tied to incidence.
Perhaps in attempting to appeal to an increasingly widening audience of constituencies—members of local and global communities, corporate sponsors, everyday consumers—those at the helm strategically watered down messages to better address their many audiences with a single symbol or tagline. The logic behind this approach might be that the more basic the message, the more applicable it will be to a wider population, despite their differences.
But in defense of the trajectory the movement has taken, plenty of research supports the effectiveness of health messages that stray away from complexities that can be interpreted by audiences as overwhelming and thus impossible to implement (Baur & Prue, 2014). A case in point is the USDA’s development of the “Choose My Plate” campaign which pictures a plate divided into four sections, each containing one category of food (for instance, fruit or grains) to replace more complicated food pyramids to guide food behaviors, especially among children and young adults.
While simplification of research, which in the case of “Choose My Plate” includes understandings about the kinds of nutrients offered by each food group and the importance of these groups to the proper functioning of the body that can help a consumer to comprehend the “why” behind the guidelines, can improve accessibility to and adoption of the message, I question some of the trade-off involved in this approach. Scientific knowledge, and the paradigms existing research supports, are ever-changing. As research contributions grow and paradigms shift, might prior understanding of the “why” behind behaviors in need of further modification prove beneficial?
The advocate’s dilemma rests on how best to construct messages intended to improve public health. In a developed (conference) paper, I will address a series of questions against the backdrop of breast cancer messages in a public health context, including
• Should the objective of public health messages be to inform and/or to instruct? Informational messages might incorporate more scientific background material than messages focused primarily on changing behaviors. What are the ethical implications of instructing publics without offering sufficient scientific explanation for the recommended actions?
• How might public health audiences be invited into the process of message selection and distribution for their particular communities by playing an active role in negotiating the balance of science and simplicity in message construction?
• How might we measure the effectiveness of our messages, both in the short-term and in the long-term as the science behind messages shifts and creates new challenges for public audiences?
Baur, C. and C. Prue. (2014). The CDC Clear Communication Index is new evidence-based tool to prepare and review health information. Health Promotion Practice 15(5): 629-637.
Higashi, R.T., et al. (2013). The ‘worthy’ patient: Rethinking the ‘hidden curriculum’ in medical education. Anthropology and Medicine 20(1): 13-23.
Penney, A. (Oct. 1991). Editor’s letter. Self.
Ryan, C. (6 Nov. 2014). The science of survival. LA Times: A17. Why women need more science with their breast cancer survival stories (5 Nov. 2014) LA Times online: http://www.latimes.com/opinion/op-ed/la-oe-ryan-breast-cancer-20141106-story.html
United States Department of Agriculture. (2014). Choose my plate. Retrieved 4 Feb. 2015. http://www.choosemyplate.gov/
Zhang, Y. (2014). Beyond quality and accessibility: Source selection in consumer health information searching. Journal of the Association for Information Science and Technology 65(5): 911-927.