darius goes west

I've been hearing a lot about the documentary Darius Goes West lately, a documentary about a young man with Duchenne's Muscular Dystrophy named Darius Weems. This film has been highly recommended (by Oprah, for instance) for use in middle to high school classrooms - to both raise awareness about the disease (which is the number one genetic killer of youth worldwide) and to "propel the positive & empowering message of Darius Goes West as far and as wide as possible." (from dariusgoeswest.org) To achieve this goal, The Darius Goes West website will ship out a free DVD to educators and has made available a "standards based curriculum" to accompany the film. Arrangements can also be made for Darius Weems to attend a video-conference Q&A in your classroom.

Admittedly, I hadn't given a lot of additional thought to what I'd heard about Darius Goes West - for one thing, if I land in middle school, I'll be teaching middle level science (although an interdisciplinary approach that investigated the cause of Duchenne's, research like gene mapping, treatments, and potential cures could be very interesting). However, while channel surfing the other night, there it was, being shown on the Halogen channel. I decided to watch it, and it was a very touching movie about a 15 year old young man who knew his life would be cut short (his brother died as a result of Duchenne's at 19) and wanted only to go west and get his wheelchair "pimped" on MTV's "Pimp my Ride." It definitely evoked sympathy for Darius (especially since MTV wouldn't touch his wheelchair or invite him on the show) and inspired you to also pay attention to issues of inclusion and difference. Of course, it also encouraged you to support Duchenne's research. Overall, I thought that the documentary was good.

As I watched, though, thoughts expressed in one of the readings from our special needs class kept springing to mind. I can't recall the title of that article, but it contained a section decrying the "poster child" method of raising awareness of (and funds for) diseases and/or disabilities. One danger, we were told, is that the emphasis becomes the generation of revenue, with the poster child simply shilling for disease research. A good treatment of this issue can be found in another article, "From Poster Child to Protestor". Author Laura Hershey's particular beef is with the Jerry Lewis telethon, and she expresses the following complaint about manufacturing poster children:

Now we were taking on one of the biggest barriers of all: the paternalistic attitudes which prevail in our society, and which are reflected so dramatically in the annual telethon.

So, for anyone reading this blog, I toss the ball into your court. What do you think about this? Is finding a charismatic, sympathetic character and casting him or her into the role of "Poster Child" good, mostly good, tending to do more harm than good, or just wrong? Let me know what you think. And do watch Darius Goes West if you get the chance.