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Change how you see, See how you change

Change how you see, See how you change.

Rick Guidotti uses this as his overarching theme for the Positive Exposure project, and the 11th Moebius Syndrome Conference this past weekend reaffirmed the power of this statement for me. As much as his project is about changing how people from outside of the disability community view people with different medical conditions, the perhaps surprising power of the project is really empowering people from within.

I love seeing children and adults, many of whom have faced teasing or worse at one time because of how they look, light up before his lens. I love how he, to use his own words, treats every subject he photographs the same way he treated supermodels. Empowerment is perhaps an overused concept, but witnessing and being part of his creative genius is truly empowering.

I think that empowerment is why I come back every 2 years to Moebius Syndrome Conferences. The community, my friends. The medical information, while always fascinating, is secondary. It’s a bit disarming, in the best way possible, every time… to suddenly be surrounded by people like me – to have it re-normalized, if only for four days every two years in July. It takes you aback, in a way.

But I love seeing the groups of pre-teens roaming the conference hotel in search of adventure, the younger children making friends and meeting children who look like them for the first time, and the incredible community of adults with a wealth of experience and knowledge. I even love the talent show… even if we did witness every possible rendition of “Let It Go” (some even complete with costume!).

It’s about the exposure to different people going through some of the same things I am, and learning from them. It’s about changing how I think about things and how I approach life with Moebius syndrome. It’s about seeing myself evolve over time as a person and as an advocate. It’s about introspection, and about socializing over drinks with our ears still ringing from talent show performances. It’s about history and shared experienced, and it’s about the future.

I am excited about what’s to come after every Conference, and this one was no exception! Looking forward to the FRAME video project explaining Moebius syndrome, applying to be a Pearls Project Ambassador, and about all the exciting research to come!

And very excited about having the 2016 Conference in Los Angeles… can’t wait to go to Disneyland again! And the beach!
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