Conference, Moebius Syndrome

An anthropologist’s take on Moebius

Reading the (comparatively) vast amount of press surrounding the Conference, I feel the need to call everyone’s attention to a wonderful post-Conference post by Susannah Fox, from the Pew Internet & American Life Project, who specializes in health and the internet. 

Her post, about Kathleen Bogart’s session and the reactions it inspired, where people thought deeply about the social and emotional impact of having a facial difference, was a welcome relief from the more traditional media portrayal this weekend – the “suffering” highlighted in the CBS Philadelphia article, or the Philadelphia Inquirer’s retracted statement that surgery can “cure” Moebius made me thankful for her anthropological take on the event.

Because so much of the conference is scientific and medically-driven, focused on research and tests and evaluations and therapy… it’s useful to step back and look at the big picture, which I think this post did.  Because no matter what research is going on, what medical procedures people are or are not having, it’s about people and relationships and a life far removed from the doctor’s office.

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