Friday, June 05, 2015

Building Theory

This weekend, I am at the RSA 2015 Summer Institute attending a workshop on Theory Building in the Rhetoric of Health and Medicine. I'm excited; I've not attended an RSA workshop before, the leaders and other members of the workshop are doing work that's interesting and exciting, and I really enjoyed the reading materials.

I had forgotten how fun that experience is--to get a reading list from a group of experts, read it, think about it, and then get together with other engaged people to discuss it. I haven't really gotten to do that since coursework, which ended four years ago at this point (yikes). Of course I read a ton of things all of the time and take notes and am motivated to read more by recommendations I hear, but it's not the same as working in a group with some really smart folks leading the charge.

According to the pre-workshop documentation, we're focusing this week on theory building with Ebola as a common example, which I found to be a fascinating choice. I was obsessed with Ebola in the fall but, with the rest of America, quickly forgot about it once the initial fervor had passed (in my defense, I became obsessed with measles instead, as the Disneyland outbreak picked up steam, but that's no real excuse for ceasing to care about real people infected with a real deadly disease). I was thinking about that viral amnesia today when re-reading Paula Treichler's How to Have Theory in an Epidemic, another reading assigned for the workshop. Treichler includes a lengthy quotation from Stuart Hall in the prologue, some of which states,

"AIDS is indeed a more complex and displaced question than just people dying out there. The question of AIDS is an extremely important terrain of struggle and contestation. In addition to the people we know who are dying, or have died, or will, there are the many people dying who are never spoken of" (3-4).

I believe these observations point to the importance of the work that medical rhetoricians, medical humanists, and cultural theorists undertake. Right as Hall is about the invisibility of many of the early AIDS victims--and AIDS as a disease, no less--it strikes me that many diseases have their own forms of invisibility, of silenced and muted voices, of blind spots and amnesias that blot out victims from view. Sometimes those victims of disease go unnoticed for years, sometimes they come into focus and benefit from attention, sometimes they come into focus only briefly and then flit away. No one knows (or cares) where they went or what happened to them. Sometimes they come into focus only to be heavily stigmatized, and benefits to the victims are few (maybe this is the case with Ebola?). Visibility isn't always a good thing; invisibility isn't either. Both may be inevitable.

Who, why, when, and how visibilities are created and negotiated in public spaces is the task of the medical humanities and medical rhetoricians and those who study and understand culture and communication. Disease, though it has undeniable objective components and consequences, is only partially those things. It's also a social phenomenon that needs to be understood if the disease is ever really grappled with. This is what makes me excited about my job, my research, and this workshop. Looking forward to an illuminating weekend.

Friday, May 29, 2015

Return to Blogging; Interesting Mea Culpa

It has been over a year since I have posted to this blog. I intended to get back to it this winter, but all of my posts wound up being either too short to be useful or too long to interest blog readers. It's an interesting writing challenge to be brief and responsive while also being comprehensive and still, altogether, not taking up too much time.

However, I realized as I was sharing this difficulty with a good friend who writes and develops the amazing fashion blog, Pumps and Polka Dots the other day, and I realized that this might be precisely why I should be blogging more often--to give myself the writing challenge that I clearly need. Plus her system for keeping blogging regular sounded like a great plan. So, I'm going to make an effort to post more frequently in the coming weeks.

Today, I just have a few brief comments on this article published yesterday by Tara Haelle, "How A Claim That A Childhood Vaccine Prevents Leukemia Went Too Far" in response to an earlier article she had written, which connected Hib vaccine to decreased risk for acute lymphoblastic leukemia. In her response article, Haelle outlines an extensive process she went through as a reporter to verify a claim she came across in a press release that, "the cancer protection offered by the Hib vaccine has been well established in epidemiological studies." Haelle describes seeking out numerous sources to verify this claim without being able to firmly determine that Hib vaccine can prevent leukemia. However, several news organizations picked up the story, and the connection between Hib vaccine and leukemia prevention became widely reported. But, the connection simply isn't true, as Haelle herself reports:

"In short, this study's press release greatly oversold the findings, and in my first interview with him, Müschen didn't discourage this conclusion. Was the research interesting? Yes. Does it add to our understanding about how leukemia begins? Yes. Can other researchers build on what Müschen and his colleagues demonstrated? Yes. Does it show that the Hib vaccine helps prevent cancer? Absolutely not."

She goes on to state that vaccine refusal may be a contributing factor to why people were so eager to find and report additional benefits for vaccines. In a time where the benefits of vaccines are being questioned by some, there is a rhetorical rush to find more benefits and more reasons to vaccinate. I'd add to Haelle's conclusion that sensationalist reporting and pro-vaccine support has contributed to this frenzy as well; yes, it's a reaction to vaccine refusers' claims, but it is imbued with its own forms of exaggeration and damaging claims as well. Charges that vaccine refusal is a case of medical neglect or that parents who obtain exemptions should be charged with child endangerment only add fuel to the fire about vaccines and are ineffective as persuasive techniques.

Yet, these are the very claims that made their way into numerous articles covering the Disneyland measles outbreak this winter. Even small things, like rounding up disease cases, linking to articles that do not support the claims that authors make, and bombastic titles designed to get clicks rather than inform can help to perpetuate an environment of misunderstood science through exaggerated benefits. More re-examinations like Haelle's would do well to dispel these issues, though more prudence in what does and doesn't get reported in the first place would likely be a more effective technique for de-escalating vaccine debates.