Women's Health Advocacy

Rhetorical Ingenuity for the 21st Century

Jamie White-Farnham, Bryna Siegel Finer, Cathryn Molloy, Jamie White-Farnham, Bryna Siegel Finer, Cathryn Molloy

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429574962
• Edition: 1
• Topic: Filología
• Subtopic: Estudios de comunicación

Women' s Health Advocacy brings together academic studies and personal narratives to demonstrate how women use a variety of arguments, forms of writing, and communication strategies to effect change in a health system that is not only often difficult to participate in, but which can be actively harmful. It explicates the concept of rhetorical ingenuity—the creation of rhetorical means for specific and technical, yet extremely personal, situations. At a time when women's health concerns are at the center of national debate, this rhetorical ingenuity provides means for women to uncover latent sources of oppression in women's health and medicine and to influence matters of research, funding, policy, and everyday access to healthcare in the face of exclusion and disenfranchisement. This accessible collection will be inspiring reading for academics and students in health communication, medical humanities, and women's studies, as well as for activists, patients, and professionals.

SECTION 1

Rhetorics of Self

With a focus on individual rhetorical action, this section includes chapters that report on women’s self-sponsored writing, such as expressivist writing, writing-to-heal, or writing for educative practices. Generally speaking, this section is devoted to the creativity of women responding to the circumstances of their health.

ADVOCATE

Donna Laux

My first period lasted 14 days. That might have been a clue that all was not well reproductively. By 15, I was enduring extreme periods to the point of passing out in school from iron deficiency. My parents were sympathetic, but I was told, “it’s hard for some girls,” and I didn’t want to be seen as a wimp.

In college, I got on the pill, and things were better. But later, when I stopped taking the pill, the suppression that it provided ended, and I returned to excruciating periods.

At the time, I read a tiny snippet in an “Ask the Doctor” newspaper column. It described endometriosis and matched me exactly. I went to my OBGYN and said, “I think I have endometriosis.” He laughed at me, and said “no way.” I was 22. He said that endo was a disease of older woman. If I were 40, maybe. But he agreed to operate. I had my first laparoscopic exploratory surgery in 1977. The operative note reads, “the patient has massive endometriosis.”

The lessons I learned were that:

• knowledge is power
• I could trust what I was experiencing in my own body despite what the doctor told me
• doctors don’t know everything
• I could speak up for myself, and the world wouldn’t end.

But then. Having been vindicated about my disease, I was out of knowledge. What should I do next? The surgery was only to diagnose; the endo itself was untouched. The doctor told me of a new miracle drug. I just had to take it, and I’d be fine.

Except I wasn’t. On the medication, Danocrine, I had significant and permanent side effects. It was extremely expensive, and I was uninsured; though I took it religiously for an ironic nine months, it took only four days after stopping for all my symptoms to return.

There had to be a better way.

I threw myself into reading everything I could about endometriosis, including arcane medical texts in the university library basement. I joined a national support group, then was elected to its Board, then launched a local support group, then started to speak to other groups.

Around 1985, Nancy Petersen reached out to me. She is an RN who was helping to publicize the groundbreaking endometriosis work of Dr. David Redwine. He called for the treatment of endo to change radically, from medical suppression (which does nothing to treat the underlying disease) to surgical excision of all endometriosis. Nancy was (and is) a tireless advocate and mentor who sees her role as that of educator. “Each one, teach one” is her often-heard mantra.

Nancy recommended me for the extraordinary opportunity to become the founding program director for what is now an internationally-known program, the Center for Endometriosis Care (CEC) in Atlanta. To develop the program, I spent countless hours on the phone and at the computer and gave presentations all over the country, in church basements, and in enormous auditoriums. The settings were different, but the questions were always the same:

• What is wrong with me?
• Why don’t my (family, friends, partner, physician) believe me?
• Why aren’t there more doctors helping?

People with endometriosis were starving for information. My approach to advocacy was to lay out the facts, encourage all the questions, and then stand back to let people draw their own conclusions. I told them that we all need to become active participants in our healthcare decisions, instead of waiting, passive and afraid, for a physician to tell us the plan. I wanted to help overcome the barriers that stood between pain and resolution, and engender ownership of each individual’s approach to their own healthcare issues.

The CEC, with Dr. Robert Albee and later Dr. Ken Sinervo, became wildly successful. The feedback loop between educating and empowering patients, watching them hire experts to be on their healthcare teams, and then zooming through surgery and recovery to go on to solid, fulfilling lives was enormously gratifying. It remains the best work I have ever done.

Over the past several years, I have been an Admin for the Facebook group, Nancy’s Nook. As such, I’ve watched membership explode from a few hundred to nearly 50,000 members worldwide. During that time, the focus of the group has shifted from that of an online support group to that of an online reference library. Members are encouraged to study more than one hundred files created by the Admins to cover most aspects of endometriosis. They are then informed and empowered to work with outstanding surgeons (a curated list is maintained) and to challenge those less skilled or less aware.

It is a testament to the value of the group that many new members report their physicians/NPs/PTs sent them to join. The best doctors are not intimidated by knowledgeable patients.

It’s been more than 40 years since I first heard the term “endometriosis.” What has changed since then? On the positive side, some doctors are welcoming patients who know about their disease, who are forthright about their needs and who are unwilling to be fobbed off with platitudes and patronizing attitudes. Some people with endometriosis are speaking up and speaking out about their disease and their treatments. Celebrities are acknowledging that they have endo (with mixed results, to be sure), when 40 years ago that would have been career suicide.

At the same time, large pharmaceutical firms spend millions advertising medications that do not solve the problem, but are expensive and often cause significant side effects. Although the average OBGYN sees endo in their practice, few are skilled in recognizing all appearances of the disease, and fewer still are adept at its complete removal. And many of the old, outdated notions are still out there:

• just suck it up; it’s only your period
• just have a baby
• just take these meds
• just have multiple surgeries, and then …
• just have a hysterectomy.

Sigh.

Are we there yet? Hardly, but I have witnessed remarkable progress, and I am hopeful. Talking about a menstrual issue is no longer a forbidden subject, mentioning ovaries and pelvic pain is no longer conducted in whispers, if at all. I hope that 40 years from now, advocates for people with endometriosis will be an almost forgotten memory because the need for us will have vanished. xo

1

WRITING MY BODY, WRITING MY HEALTH

A Rhetorical Autoethnography

Kim Hensley Owens

When I was a sophomore in college, taking notes in a Near Eastern studies class one Tuesday afternoon, my right hand suddenly became numb and cramped. A dedicated student, I shook out my hand, glared at it, and hastily shifted to taking notes with my left hand, assuming whatever was going on with my right hand would go away. Instead, it worsened over the next few weeks. I had to quit my job at a local deli/grill because I could no longer perform the chopping, cutting, and assembling duties required. Within a few weeks, life was back to normal: I had a new job as a waitress and was able to write with my right hand again. While I can remember all of this now, after having read journal entries that jogged my memory, I had completely forgotten about this episode for years and didn’t rediscover this moment from my past until I read those journals a long time after many years of (probably-related) struggle I experienced (and occasionally still do) in graduate school with shooting pains and numbness in both hands, wrists, and arms. My writing about that seemingly isolated health event in college helped me to process a scary and painful experience at the time, and later, it allowed me to piece together a timeline of causation that has helped me to better understand my body and the repetitive stress injuries it seems particularly prone to experiencing.

This chapter aims to bring readers into the lived experience of various health issues in a “feeling and embodied way” (Ellis, & Bochner, 2006, p. 437) and to elucidate the rhetorical value of health-related writing. I revisit and analyze my writing about health issues, employing what rhetorician Lunceford (2015) calls “rhetorical autoethnography.” Readers of rhetorical autoethnography are invited “to ‘see’ the work as it happened” (p. 7). Because of the personal context provided alongside rhetorical artifacts and analysis, readers can “more fully understand the rhetorical artifact[s] under consideration” (p. 10).

In this rhetorical autoethnography, I describe and analyze snapshots of my life and writing from moments when I was consumed by heightened physical (and often accompanying emotional) pain or intensity. Following the principles laid out by Lunceford (2015), my aim is to let readers connect to me as both a writer and as an embodied being, while adding to understandings of disparate rhetorical artifacts (pp. 7–10). I rely on the scholarly traditions of autoethnographic books (e.g., Behar, 2014; Paget, & DeVault, 1993), diary analysis (e.g., Bunkers, & Huff, 1996; Gannet, 1992; Sinor, 2002), and medical and health rhetorics (e.g., Santos, 2011; Scott, 2003; Segal, 2005) to make rhetorical sense of two decades of my own health-related personal and public writing. In what follows, I focus on my writing about and advocacy for different physical issues over the last two decades of my life in a series of what might be termed analytical vignettes, or short, self-reflexive stories and analyses.

Through these analytical vignettes, I explore the functions, forms, and value of various examples of my writing about a wide range of medical issues and often-invisible-to-others challenges, including the crippling and almost career-ending wrist issues alluded to above; breast lumps, biopsies, and maternal breast cancer history; and a hip labral tear and subsequent surgery. My analysis shows that personal health-related writing allows a patient–writer to take control of her health narrative, to come to specific beliefs and understandings about her health, and to determine what actions are necessary. I argue that even private self-sponsored writing is a form of activism because it enables and distills a writer’s orientation to activist thought and because it presages and provides a template for public activism.

* * *

I’ve been writing about my health and body for as long as I can remember, starting with diary entries from the age of ten. I’ve written for an audience of one about pains and kisses and joys and fears, but I haven’t always written about my health and body for a more public audience. Even when I did, ostensibly, try to write for an audience, I didn’t follow through on the public part at first. At 23, after undergoing surgery to have three “suspicious but probably not cancer”¹ breast lumps removed and biopsied—a procedure helpfully referred to for a young, fearful, single woman as a “partial mastectomy”—I wrote an essay of a few thousand words. After titling the piece “Triple Biopsy at Twenty-Three,” I popped into a Borders bookstore to look up how to submit an article to a magazine. Following the generic submission instructions, I typed the title, my name, my address, and a word count onto a cover page, printed the essay, paper-clipped it together, and promptly placed it in a file folder, never to be sent out to anyone, ever.

Into that essay I poured every detail of the indignity of sliced-open young breasts; the enormous (to my eyes then), raised, and initially glowing-red scars; the exquisite stabs of pain I felt as I wrote on the chalkboard for the 8th grade classes I was teaching or as I zipped my breasts each morning into an infantilizing Mickey Mouse bra—the only one I’d been able to find in stores in that pre-Amazon era when instructed to buy a “zip-up sports bra.” I wrote of my near-certainty that no one would fall in love with the version of me who had such vivid scars, such visible physical flaws. While I desperately needed to write about and wanted to share my fears, pain, and worries, and while I actively imagined an audience beyond myself—a magazine-reading 20–40ish female audience, to be specific—I never actually sought one. Instead, every few months, then every year, I’d pull out the paper-clipped essay and re-immerse myself in the fears and pain associated with the experience. Later, once my fears finally proved unfounded, I’d re-read with different eyes and tried to forgive myself for melodrama.

That essay functioned similarly to a diary entry, in both the private and female-gendered forms Gannet (1992) describes as the flip sides of public and commonly male writing. However, the essay’s form, with its carefully followed submission guidelines, hints at a yearning to speak to a larger audience than the audience it reached—the audience of selves (present and future) a diary typically targets. Beyond its function as a private record, the essay served the emotional purposes Pennebaker and Chung (2011) have repeatedly shown such writing can, by providing relief from the trauma. Writing the piece helped to enable an acceptance, over time, of the scare and scarring the surgery manifested. It provided a space for me to write about my experience from the inside, but also allowed me to look at my experience from the outside—allowed me first to hide from the experience in the moment, and later to re-inhabit and re-examine the experience from a different perspective, through a longer lens of time.

Most importantly, for the purposes of this autoethnographic exploration of activist health rhetorics, I drew on that piece when I first shared health information publicly. As a graduate student six or so years after the initial surgical biopsies, I had undergone additional biopsies—needle biopsies that time, with far less physical trauma involved. With my first biopsies, the emotional impact was enormous, but the financial impact nonexistent because the HMO insurance provided through my K-12 district employer had left me with a zero-dollar co-pay for surgery. My later biopsy experience in graduate school came with far less emotional drama, but with unexpected financial trauma. My graduate TA insurance coverage and the hospital’s charges differed by several hundred dollars per procedure, leaving me with a bill in the thousands. My efforts to negotiate the prices with the hospital based on the “usual and customary” charges my insurance would cover were utterly unsuccessful. I learned that the term “usual and customary” has no correspondence whatsoever with the amount a provider might charge, and it made me angry.²

Spurred by the anger I felt at the injustice of the charging system and at the insurance that didn’t cover my needs, I wrote a speech for a graduate student union rally. I knew I would be facing a crowd of mostly ambivalent fellow graduate students—some members of our then-unrecognized union, others prospective union members. I wanted to encourage my peers and colleagues to vote for a union that could negotiate to improve our insurance coverage. I began the speech by calling attention to graduate students’ typical youth and presumption of good health before turning to my own story, which I started by yelling, “Do I look healthy to you?” through a bullhorn. While I now question the assumptions I asked others to make by asking that question, it was, at the time, the best way I could think of to begin to make the invisible visible. I wanted to set up the contrast between a person who might appear perfectly healthy, but nevertheless have expensive medical costs—a person who could as easily be any of them—as a reason to vote for better healthcare.

Without the diary and essay writing that preceded that speech, I would not have had the clarity of mem...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• List of Figures
• Acknowledgments
• Acronym Key
• Introduction
• SECTION 1: Rhetorics of Self
• SECTION 2: Rhetorics of/and the Patient
• SECTION 3: Rhetorics of Advocacy
• Afterword “The Rhetorician [of Health and Medicine] as Agent of Social Change”: Activism for the Whole Woman’s Body
• Notes on Contributors
• Index