The PD Narrative Project Strikes Again!

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By: Dr. Jenny Nelson

Just returned from Wright State University, where the weather was frigid, but the welcome was warm! I was invited by Dr. Elliot Gaines to reprise “A Whole Lotta Shakin’ Goin’ On: a Rhizomatic Approach to Parkinson’s Disease Narratives” (our performance version of The PD Narrative Project) which he had seen at the Semiotic Society of America’s conference in October. Elliot is not only the president of SSA, but he’s an Ohio University MDIA alum (see his book, Media Literacy and Semiotics, with an excellent chapter about how the media covered the Nancy Kerrigan/Tanya Harding whack-a-knee Olympic debacle back in 1994). Exciting stuff!

So, Camilo Perez and I presented our analysis and videos to three different audiences:  the faculty of the Communication Department, a class of graduate students in biology, and a class of undergraduate journalism students. The Communication department is considering adding video production to its curriculum; the biology students are learning to “communicate science” with video; and the journalism students are learning to report with creative short-form video.

I’m always intrigued by people’s responses to the videos, and in ways I can never predict. After each and every Q&A session, there are always a couple of people who approach me quietly to share their own disability stories.  This time it was a young man whose wife was recently diagnosed with a rare neurological disorder that causes heart arrhythmia.  We talked about how they might collaborate on a video together and, after a bit of hallway brainstorming, decided he should call it “A Heart-Headed Woman.” And then we joked about illness puns. 

Later, a biology student with severe migraines (and fluent in medical discourse) told me she was worried sick about her health insurance running out on her 26th birthday. What would she do without her meds, which cost $109 per pill? We talked about support groups (and how helpful they can be) and Oliver Sacks’ book, Hallucinations, which describes migraines in fascinating detail, and together we came up with her story theme: “Brainstorms.” And then we joked about illness puns.

Another guy, a faculty member who had suggested that our videos were “narcissistic,” waited until we were alone and then, near tears, asked me whether his wife’s inexplicable thumb tremors and cramped toes might be symptoms of Parkinson’s disease. What could I say?  “Probably, man. Get it checked out with a neurologist.”  And this is why the videos are not narcissistic! Stories are there to be shared for a reason! 

Let me be a little more candid about where these conversations took place. We didn’t actually talk in the hallways, but in the underground pedestrian tunnels that link all the buildings on the Wright State campus. Their origin story is shrouded in myth (involving the military, the CIA, asteroids, and aliens), but the tunnels help make Wright State a national leader in handicap accessibility. I was also impressed by the comprehensive services and classes that are offered (Personal Assistance Management and Adaptive Computer Technology, among others). Really, at every turn, I saw yet another student in a wheelchair, or in groups in the cafeteria, where all tables are raised a bit to accommodate them. It was heartening to see such a vibrant community (over 500) in an environment where they are enabled, not dis-abled.

Next stop for The PD Narrative Project? The Women & Gender Studies Conference here at OU on February 13-14, and – get this — the Interdisciplinary Coalition of North American Phenomenologists in St. Louis in May. Now you know, so stay tuned!

And a Shout Out to Yellow Springs: we spent our first night at The Springs, a funky-cozy solar-powered motel with an office cat, an open-door policy, and $49 rooms.  We had hoped to spot the awesome Dave Chappelle, but it was too cold and so we didn’t look very hard. Oh well, next time we visit Wright State, we’ll try again!

[Dear Reader: why not take a look at the PD Narrative Project videos (link below) and decide for yourself their level of solipsism? Just reply in the Comments section]