Ethos, although clearly an important rhetorical appeal, remains largely unexamined in our discussions of health-related issues. Increasingly, important health information is exchanged and public discussions take place in online forums, and whose ethos we accept as most valid has important repercussions for patients, health-professionals, and medical research. Drawing on arguments presented in online medical communities, this paper considers how chronically ill patients with invisible disabilities challenge regulating norms of accepted ethos. Using disability theory and online patient commentary about a contested Oprah Winfrey show episode, I examine how these online patients use their emergent ethos to co-construct important medical knowledge.
"For ancient Greek Physicians, healing was understood as techne, the artful practice of aiding the body in restoring itself back to its natural condition of harmony" (Aho & Aho, 2008, p. 146). No doubt those same Greek physicians could not have predicted the expansion of health-related literacy that has moved techne from the realm of specialized discussions among physicians to more public forums, whereby average citizens can and do express their interpretations of health-related issues. Online medical communities serve as one forum for distributing information from both medical practitioners and patients. These electronic spaces have the powerful potential to reorganize our concepts of ethos, or rhetorical credibility. The degree of belief that should be warranted to speakers based on their identity continues to drive areas of contestation in the medical realm, perhaps more so in these electronic forums. Drawing on arguments occurring in such forums in reaction to the portrayal of a particular illness, Multiple Sclerosis, on a recent episode of the Oprah Winfrey show, this paper argues that current public representations of frequently invisible chronic illnesses challenge previously accepted hierarchies of ethos as perceived in health-related discussions.
Societal consideration of ethos often points readers toward a philosophy of ethics, and, while this term easily lends itself to a study of the moral norms society deems essential, this paper addresses ethos and ethicality as the character constructed by a speaker and the credibility granted to her by her audience, rather than in the broader, though related, sense of ethical as the quality of behaving according to moral standards. Although he establishes three distinct rhetorical appeals (ethos, pathos, and logos), Aristotle's treatment of ethos (see Rhetoric), warrants only one chapter, while "he devotes nine to logos, sixteen to pathos, and eleven to style" (Kinneavy and Warshauer,1994, p.172).
Ethos is certainly worthy of greater consideration, especially as it relates to the realm of online support groups and the evaluation of arguments surrounding medical knowledge, because one's ethos lays the groundwork for whether or not an audience can or will accept the statements an individual puts forth. Aristotle posits that ethical rhetors must demonstrate intelligence, solid moral character, and good will toward their audiences (Crowley, 2008, p. 201). They can establish these qualities in two ways. "According to Aristotle, rhetors can invent a character suitable to an occasion — this is invented ethos. However, if rhetors are fortunate enough to enjoy a good reputation in the community, they can use it as an ethical proof - this is situated ethos" (Crowley, 2008, p.198). In other words, ethical credibility can be acquired through invented ethos (derived from the purposefully constructed self a speaker uses in her attempts to convince) and situated ethos (derived from the social relationships among the speaker, her audience, and their social milieu). On a scale of relative social importance, questions of individual ethos may seem of little concern, but the recognition of and reflection on ethos-based arguments are vitally important in the context of public issues, including perceptions and realities of health and healthcare, because the ethe accepted as credible shapes current and future research, and accepted knowledge.
In situations that address individual or group health, how do we decide what types of ethos-based appeals warrant the most credibility and whose arguments should be given the most attention? The credibility of our traditional authorities, licensed medical professionals, is comprised of the situated ethos bestowed by their professional or academic titles and their institutional affiliations. These same individuals' invented ethe are established through repeated actions of proven integrity. Currently, given the expanded public discussions regarding medical practice overall and the need for patients to seek second opinions, the ethe established by those outside the medical community have taken on added importance and consequence. As e-patients in online medical support groups continue to assert themselves as credible voices in the realm of medical knowledge, how they build, and others perceive, their ethe influence which arguments will shape our broader understanding of medicine.
According to national researchers, the amount of medical information obtained online by patients continues to increase at marked rates. A Pew Internet & American Life study reported that "twenty-one million of the fifty-two million American adults who sought health information online reported that the resources they found on the Web directly affected both their health care decisions and interactions with their doctors" (Calabretta, 2002, p. 32). The public has come to rely on the information presented to them via websites like WebMD and those of major research hospitals, such as Johns Hopkins or the Mayo Clinic, but they are also consulting online medical forums in which patients themselves are substantial contributors to the shaping of public perception about their conditions.
While doctors have long been able to rely on a strong situated ethos derived from their position within the societally recognized medical establishment, and celebrities have been able to leverage their already established connections to gather a wide audience to hear their opinions on health related topics, the ability of the average disabled person to derive ethical credibility from broad-based community support has been limited until relatively recently. The rise of focused online communities that bring together participants from geographically disparate areas provides them with forums in which new social relationships and degrees of authority can be developed. These groups provide participants with tools to help them gather information to make decisions based on reliable, community-provided data that bypasses traditional research channels, and have created opportunities for new voices to establish the credentials to be heard. All ethical appeals hinge on the credibility of the speaker, and that ethical credibility is substantially derived from the community. If a speaker can establish and maintain the endorsement of a large and growing community comprised of individuals who themselves have a credible ethos as people dealing first hand with a disability, her ethos grows stronger as the community grows larger. The community's collective voice also benefits from this growth and amalgamation of individual ethe which strengthens the group's ability to establish standing in wider societal forums.
Theorizing an Ethos of Invisible Disability
As evidenced in current online support groups, as well as multi-million dollar medically related book-sales, the human body is often positioned as something healthy individuals can maintain, or even enhance. Genetic predispositions toward some diseases, such as heart disease or diabetes, are explained as potential conditions that can be controlled or shaped by personal habits, while other chronic illnesses are publicized as narratives of triumph. The highly visible struggles of people with conditions such as Parkinson's Disease carry particularly convincing degrees of ethos in public discussion due to their undeniable authenticity, which renders them more credible. Those with illnesses that are not so clearly understood or seen face a different challenge.
In particular, chronic illnesses like Multiple Sclerosis (MS) or Fibromyalgia (FMS) represent a class of invisible disability where individuals manifest a range of potential symptoms, including severe chronic muscle fatigue, balance and coordination problems, painful swollen joints, dizziness, depression, or cognitive issues. When someone overcomes or successfully adapts to these largely invisible symptoms there is no outward evidence of the fact, and thus no publicly bestowed strengthening of credibility. Aside from the definitional and categorical issues these disability categories present (see also Lightman et al., 2009; Siebers, 2008; Garland-Thomson, 2005; Moss & Dyck, 2003), people with chronic illnesses that carry few readily witnessed symptoms have more difficulty establishing credibility with the wider population beyond those who are already knowledgeable about those illnesses. This is not meant to minimize the often obvious difficulties encountered by people with more physically evident disabilities, but to foreground how the differences in symptoms manifest themselves and inhibit the development of credibility for those with invisible disabilities, especially as advocates for their own illnesses.
The ethe of individuals with frequently invisible chronic illnesses represent important areas of investigation regarding disability, bodies, and public discussions of health related issues (Stone, 1995; Lightman et al., 2009). If ethos is clearly demonstrated through reputation and credibility that includes a physical body, then the ethos-building potential of a person's physical presence can also be diminished or ignored in cases where that person's invisible chronic illness or disability presents no readily perceived aspect. These cases of outwardly invisible disabilities represent an unresolved narrative, which is problematic in its unknown or unsatisfactory resolution. "Persons whose bodies resist prescriptive packaging as able or disabled are mired in no-win situations that are not easily addressed" (Lightman et al., 2008 p.4).
While people are generally willing to accept the ethos of someone recognized as the conqueror of a diagnosis, public rhetoric suggests uncertainty over bodies that aren't visibly impaired but are still physically compromised. A "burden of proof" often accompanies those with a diagnosis of chronic illness that is not readily apparent, like those with Lupus or depression. On the topic of visible versus invisible disabilities N. Ann Davis (2004) argues, "When individuals are not "seen" as disabled, it can be more difficult for them to secure the assistance or accommodation they need to function effectively" (p. 154). Further, individuals whose outward performances seem to deny a chronically ill or disabled identity unwittingly help continue a damaging narrative about the myth of bodily perfection: if you look fine, you are fine. Chronic but invisible disabilities are too often completely "dismissed as inconsequential when the subject of disability is raised" and this is often due to our narrow conceptions of how disability looks or operates (Stone, 1995 p. 417).
Chronically ill, invisibly disabled patients who present themselves as such online are able to bypass some of these complicated scenarios. Online medical communities provide a critical space for such individuals to openly discuss, question, and compare their personal as well as socially constructed identities. Further, these same online communities help demonstrate how those with an invisible disability use the rhetorical tool of ethos to expand social understanding of their unique identities. Instead of looking at someone with an invisible disability and assessing them based on a lack of physical markers, online medical communities provide a space for these same individuals to establish and use their own ethe to openly discuss important illnesses without the sort of habeas corpus burden placed on them in live interactions. Here, authentic, lived experience warrants stand-alone proof. Online, no one is assessing physical appearance, which makes it particularly valuable for establishing the ethos of invisible disabilities.
Support group data
Online support groups and expanded technological literacies have created situations whereby public knowledge of medicine is influencing patient treatment decisions. For example, one study notes "75% of e-patients with chronic conditions said the information they found in their last search affected a decision about how to treat an illness or condition" (Marchibroda, 2009, p. 270). In these instances, patients or patient-advocates use available online information that may or may not be provided by medical doctors or researchers. As explained, persuasion and, to the same extent, ethos are "not controlled or predetermined by either the rhetoric or the audience alone but (are) co-constructed and constantly evolving" (Petraglia, 2009, p. 179). This paper suggests that co-construction occurring in online medical communities substantially relies on the lived experiences of patients themselves. Those same lived experiences create ethos-based arguments that reside prominently alongside professional medical opinion, and, in some cases, supersede doctor opinion when patients make decisions.
Online medical support groups for the American Diabetes Association, the American Cancer Society, the Autism Society of America, and the American Heart Association, as well as numerous others for illnesses like HIV/AIDs, Multiple Sclerosis, and Fibromyalgia, serve as instructive models for examining the construction of ethos within the phenomenon of online medical communities. As a case in point, one site [referred to here as Chronic Illness Forum (CIF)] allows participants the anonymity of a chosen username through which they supply personal information about their illnesses. This site differs from many others in the way it compiles symptoms and treatment options into hard data that users can view. CIF also allows those recently and previously diagnosed to read the broader narratives of their disease group. CIF acts as a primary example of human health on display in both the verbal forums and graphic quantitative summaries, thus clearly facilitating the potentially powerful influence of a collective ethos arising from that of many individual ethe. Overall, the arguments being presented convey a decisive shift from relying solely on physician or techne-centered medicine to actively incorporating, and often favoring, patient interpretation and personalized evidence. This sometimes blatant demonstration of patient-as-advocate helps make the "body an object of knowledge that yields a particular truth" not only for doctors but other patients as well (Sullivan, 2008, p.4).
When patient-participants register with the CIF website they provide current biographical information such as date of diagnosis, symptoms, and treatments. While there is no mechanism to inhibit non-patients from registering as such, CIF patient-participants tend to critique and eventually ignore anyone who refuses to provide vital profile information. Further, the site managers block anyone blatantly promoting the purchase of a particular product. Participants actually using trial medications, however, are not discouraged from posting information about their symptoms, drug reactions, and other treatment experiences. Patients trying the same or similar medicines frequently contribute to specifically categorized conversation threads. While profile information adds to the site's databases, resulting in informational graphs and charts for participants to view, the discussion section provided under each represented illness allows the exchange of information in a conversational format. Here patients can ask about anything from the diagnosis process to more personal questions regarding pregnancy or relationships. They shape their online community experience for their specific needs and support one another with useful medical information about various symptoms and strategies. In addition, patients are encouraged to share information from the site with their doctors, caretakers, and friends.
Online medical forums generally rely on participants' honest and accurate self-disclosure. Recent studies like Matthew S. Eastin's "Credibility Assessments of Online Health Information" (2001) indicate "medical professionals do not author an extensive amount of health information available on the Internet" (p. 1). Eastin illustrates how online patients are shaping health care experiences for themselves, as well as doctors who are frequently over-burdened by clinical and other research demands. A potentially unfortunate result of this scenario can be that participant-supplied data may not be entirely reliable. According to one patient-advocate, "people get radicalized when it gets personal" (E-patient.net, 2009). As noted earlier, deciding which evidence and whose ethe are most reliable creates complicated situations for participants, primary care providers, and other concerned individuals. Analyzing the various reports and evidence now instantly available online can be a dizzying experience. Add to this overwhelming amount of information the opinions of talk show hosts or national reporters who urge the public to be their own advocates, and many citizens are left to wonder what being an effective advocate for their health condition entails.
Commonly accepted knowledge among online medical community participants includes and reinforces the idea that patients should ask their medical providers questions, do research, and otherwise take an active role in maintaining their own health. This type of participatory approach easily extends itself to the consumption of medically oriented television programs. The following analysis demonstrates how Multiple Sclerosis (MS) patients used online communities to interpret and critique an episode of one program as it related to personal and communal knowledge of their illness. This example provides important insight into the ethe these patients construct and wield.
Media savvy participants
A recent (March 17, 2009) Oprah Winfrey episode that included frequent medical guest Dr. Mehmet Oz, a Professor of Cardiac Surgery at Columbia University, focused on celebrities who had received "devastating personal medical diagnoses" (Harpo Productions, 2009). The celebrity-patients spoke specifically about how they reacted to and eventually accommodated their diagnoses. One of the featured guests was former talk-show host and MS patient Montel Williams. The television announcement regarding this show did not go unnoticed by MS patients on CIF or other online forums, and participants expressed excitement at the prospect of their illness receiving the attention of Winfrey's large audience and the possible result of a more widespread understanding of their conditions and concerns. The actual airing resulted in much different feelings. The episode opened with a montage of clips from the stories that were to follow, and the first scene presented was the following de-contextualized and dramatic exchange:
Williams: I'm sitting in the closet with a gun in my mouth.
Winfrey: You had the gun in your mouth.
Immediately following the opening, in her introduction of Williams, Winfrey characterized MS as "a life-threatening neurological disease." Several online posters stated that after Winfrey's comment they asked their family members to stop watching the episode due to the fear such characterizations of their illness might cause. Numerous forum participants remarked that Winfrey's characterization of MS, which she repeated later in the show, was misleading since MS itself is generally not characterized in the medical field as fatal. The initial snippet of one of Williams' early experiences with MS was undoubtedly a powerful pathos based appeal that might cultivate ratings, but, combined with Winfrey's questionable characterization of the disease, implicitly positioned Winfrey as someone whose usually situated and reliable ethos could be questioned, at least by those either diagnosed with MS or with more experiential knowledge of the disease itself.
Many MS patients and patient-advocates who tuned into the show posted remarks as they watched Williams' interview with Oz and the subsequent discussion with Oprah. Several of these posts reveal William's failure to establish situated ethos within the broader community of MS patients. Williams' actual diagnosis of MS grants him some degree of situated ethos, and his candidness about his daily pain establishes good character, but whether or not he also demonstrated good will toward his audience could be, and was, called into question. CIF participants commented in particular on the social and economic disparities between themselves and Williams. They also strongly rebuffed his statement to be "the face of MS" as a show of arrogance and suggested that his appearance on the Winfrey show was more about selling his book than enlightening the public. Many CIF participants demonstrate a high degree of critical thinking about products and services, as evidenced through their willingness to electronically discuss medical therapies and side-effects for months if not years, and this same level of analysis was applied by forum participants to Williams' motives.
Aside from these explicitly negative statements about Williams' character as both a celebrity and representative of people with MS, many CIF participants commented in a similarly harsh manner regarding Oz's interpretation of one MS symptom dubbed the "MS hug". This sensation is commonly described as a feeling of tightness around the chest, and numerous online participants have reported experiencing this symptom, either frequently or occasionally. When Oz commented that "suffocation caused by chest hugs is the leading cause of death for people with MS" (Harpo Productions, 2009), the reaction was immediate. Since many CIF online posters rally against the phrase "MS hug," claiming the use of the term "hug" in the context of a negative symptom is a complete mis-use of the word, this added to their concerns over the validity of Oz's comments on MS overall. Several posters on CIF and other forums, many with established community ethos supported by professional background or personal experience, questioned and critiqued Oz's medical knowledge regarding the topic of MS in general, and the nature of the "hug" in particular. Among the posted opinions were suggestions that Oz visit the National MS Society, WebMD, or the Multiple Sclerosis Association of America websites to inform himself about current research as well as basic physiological facts of the disease itself.
These positions were further validated when, several days later, one frequent CIF participant pointed readers to a comment posted on the National Multiple Sclerosis Society's (NMSS) webpage regarding the March 17, 2009, Oprah episode. The NMSS response, posted one week after Dr. Oz made his statements, concludes with the professional medical opinion of Nancy Reitman, RN, MSCN, who comments that the "chest hug is not life-threatening, and MS does not commonly cause suffocation among people living with the disease"("Chest Hug", 2009). Perhaps most notable about this instance was the timing of a nationally recognized group that deals explicitly with MS. Whereas typically many patients gather their evidence from medical professionals, these e-patients strengthened their situated ethe by supplying important information to one another based on prior experiential evidence. According to the NMSS website, "Many people living with MS were concerned to hear Dr. Mehmet Oz's comments about "chest hug," suffocation and suicide during an Oprah show featuring Montel Williams on March 17 (and re-aired on August 4)." The entire MS hug issue, however, had largely been resolved for many CIF patients before NMSS even created their reply.
Other CIF participants focused on the unquestionably devastating portrayal that Oz, Winfrey, and Williams seemed to emphasize in their discussions. At one point Oz had asked Williams how he was able to function on a daily basis and whether or not he felt his diagnosis was unfair. Although Williams was able to articulate how his family and close friends helped him maintain a positive attitude, there was heavy emphasis on his two suicide attempts. Williams discussed how he had put a gun in his mouth and planned to commit suicide because of the severe pain he experiences daily:
Williams: Oh, that day I had about five of them out on the floor trying to figure out which one was going to make the smallest hole. And then I realized maybe some of my children might find me, so let's skip that.
Realizing that a presumed suicide would possibly prevent his family from collecting his life insurance he decided that stepping out in front of a moving vehicle, so that his death would appear to be an accident, was a better option. While attempting this plan Williams' action was thwarted by the quick reflexes of an oncoming driver, who stopped his car and moved to assist Williams. Since Williams' claims included stating during the show to "be the face of MS" (Harpo Productions, 2009), many CIF participants were compelled to post remarks about the disservice Williams had provided by implying his suicide attempts were somehow medically related to having MS. Aside from the obvious fear this could cause in family and friends of those with MS, Williams' description could be interpreted as forecasting little to no hope for those previously or recently diagnosed with MS. These online posters, in their sometimes angry comments, attempted to use their own ethe to battle a description provided and condoned by public celebrities.
Online discontent over the discussion on the Oprah show was echoed across not only medical forums like CIF, Moveoverms.org, and the MS forum on dailystrength.org, but also on the official Oprah Winfrey show website. Although some individuals did feel the show featuring Montel Williams demonstrated the pain they personally suffered on a regular basis, no one in the previously mentioned Oprah website or other online medical forums affirmed Oz's medical interpretation of the MS hug.
Recently diagnosed patients, concerned family members, and caretakers were then left to wonder what the actual truth might be concerning the MS hug and depression in MS patients. Patients most readily described as highly active self-advocates called for Winfrey to create another show on MS that featured average patients. Patient-advocates denounced Oz for his lack of credentials in neurology or his lack of understanding of MS as a highly individualized illness. As this instance demonstrates, online medical communities allow patient-advocate ethe to fill in some of the apparent gaps between conception and lived facts, with the possibility of publicly accepted, co-constructed knowledge arising from patients. This particular television episode reflects some of the changes wrought by online patient analyses of the ethe of societally recognized medical authority figures. Although this is one small example of the construction of knowledge in a somewhat closed community, these same communities that encourage patients to share their experiences with their family, friends, and doctors also demonstrate how e-patients' ethe can operate in multiple realms.
As noted in Evidence Based Health Communication (Brown, Crawford & Carter, 2006), "health care practitioners have often found themselves competing with other sources of information which are perceived as more credible and leave a more lasting impression" (p. 50). In the instance of Oprah's show, outside observers like those present on CIF not only called into question the credibility of the television episode itself, they also attacked what they felt were inaccurate and potentially damaging representations of the disease they live with every day. While Foucault's The Birth of the Clinic (1973) describes how institutionalized medicine prescribes regulating norms, e-medical communities are adding a new element to those same operations by attempting to re-diagnose perceived norms. If a medical professional like Oz explicates one scenario as a leading cause of death among a particular group of patients, but numerous online patients reject his explanation, whose arguments establish a norm? Is it possible to reach agreement regarding this issue online or in face-to-face contact? And if the parties somehow agree to disagree, where does that leave either of them?
This paper suggests that our acceptance or rejection of a speaker's ethos establishes and illuminates sets of frequently competing norms, norms that may or may not be based in reality and, in the latter case, could have detrimental consequences for public health. As evidenced in the remarks regarding the "MS hug" as it was portrayed on the Oprah show, there is an apparent misunderstanding of how this symptom plays out in real patients' bodies. An outside observer might note how an ultimate authority on this issue was neither decided nor considered, but the variety of online postings in reaction to this Oprah episode highlights tensions about which individuals, if any, own the final assessment of this issue.
"Practices of division, classification, and ordering around a norm have become the primary means by which to individualize people, who come to be understood scientifically, and even who understand themselves in this mode" (Tremain, 2005,p. 6). This theoretical conceptualization of how individuals are perceived by communities, especially medically sanctioned communities, creates situations in which being diagnosed with an illness grants an individual ethos to give others advice. In The New Medical Conversation Mazur (2003) explains that the medical field rarely asks "who the patient feels is the appropriate individual or group to provide the needed information" on the patient's own diagnoses (p. 147). Asking patients to consider such a large question may in fact only be a courtesy on the part of a medical doctor, but it marks an essential shift toward patients' self-advocacy.
For centuries the doctor-patient relationship has been held up as a sacred and critical component to society's well-being. Medical research studies are typically based on lengthy longitudinal research, and citizens continue to rely on doctors for medical opinions and treatment options. As Winsor (1990), a technical communication expert, points out, many researchers operate on a truth will out device model, whereby ineffectual treatments will demonstrate themselves as such only after having been tested repeatedly over time, even when the results include a significant number of negative outcomes. Online medical forums, however, provide anecdotal evidence regarding illnesses and the efficacy of various treatments more quickly. Although such anecdotal evidence relies heavily on truthful statements being made by credible rhetors, online occurrences like those arising from the previously discussed Oprah show demonstrate how patients use their own ethe to shape their peers' and the public's comprehension of complex medical issues.
Since patients on a website like CIF record, report, and analyze their experiences monthly, weekly, or daily, and those experiences are automatically translated into quantitative data, why wouldn't patients recognize their own ethe to be as credible as that of physicians? In today's society, physicians and other medical personnel still help codify and manage chronically ill individuals by labeling them with conditions that allow them to be objectified on a scientific level. Modern patients, however, are claiming new situated ethe, and, in the process, rejecting traditional assumptions about how medical discourse and the resulting treatments operate. Instead of waiting for longitudinal studies to bear some sort of truth, many e-patients are informed by peers about what treatments they're willing to accept, as well as the various courses their illness might take. While CIF and many other online medical forums outwardly state that they exist to support and inform their participants, it's the patient-participants who supply the ethos-based content that sustains those sites.
Whose ethos we choose to value in medical discussions has direct implications for future medical research and education, patient options, and our overall societal perspectives and actions regarding all illnesses. Using individual and group understanding, patients involved in online forums create support groups for themselves while also exhibiting knowledge that may be particularly useful to those working in the fields of medicine and medical research (see Rier, 2007). The ethos-based knowledge exemplified in online medical forums that target particular illnesses represents authentic, co-constructed knowledge. In addition, by providing a virtual space that validates patient conditions in terms of self-reported data rather than the perception of others, these forums create a space where credibility is more readily established by those with less visible conditions.
When the National Multiple Sclerosis Society created a website called "Faces of MS", they presumably sought to make this frequently unrecognized chronic illness visible by collecting and displaying thousands of photos of individuals diagnosed with the illness. Online medical forums and support groups, however, extend and complicate this same scenario by helping patients and their advocates establish facts that may supplant previously held assumptions about how diseases like MS operate. While any chronic illness's progression or remission is subject to individualized circumstances, the recognition of the sum of online patients' ethos-driven contributions to the field of medicine forces us to reconsider both whose arguments we give authority as we form our perceptions of medical truth, and the accuracy of our first-hand assessments of chronic illness.
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