Kathleen Bogart, PhD, studies how people communicate across disability. I met her through the work I’ve done with the Moebius Syndrome Foundation (and I wrote about her research in 2012: Facial Paralysis, Not Personality Paralysis).
She emailed me with a very intriguing question, so I’m sharing it here for discussion:
Moebius Syndrome is a highly visible, but “unrecognizable” condition. That is, strangers immediately notice that our faces and speech are different, but they don’t know the reason for the difference. They don’t understand the cause, nature, or accommodations needed for it. This makes Moebius more challenging socially than disabilities that are visible but better recognized (i.e. using a wheelchair).
In the case of Moebius, strangers become preoccupied with trying to figure out the reason for the difference, and the uncertainly may make them uncomfortable or cause them to make erroneous attributions about the reason for the difference. (i.e. assuming that people with Moebius have intellectual disability.)
I recently published a paper that laid out this theory and tested whether a few paragraphs of simple educational information about cause, nature, and accommodations would improve people’s impressions of individuals with Moebius. This hypothesis was supported, providing experimental support for the usefulness of raising awareness!
The students in my lab are really excited about the research findings and want to put them into practice by doing a big Moebius Syndrome Awareness Day campaign at OSU and on social media. (Awareness day is on January 24, so we have some time to plan.)
I’ve been letting them take the lead in coming up with ideas. They want to table in the quad and hand out information and wristbands. At the table and online, they also want to collect videos and photos of people with and without Moebius with signs saying “I express myself with my___.” This highlights that people with Moebius express themselves in unique ways, instead of with their faces. For example, I might say, “I express myself with my cooking. It means I’m creative and hungry.” The idea is that this could be posted on social media like (an educational version of) the ice bucket challenge.
I am wondering if you have any advice for where to host the videos and photos we collect, and those that others upload themselves. Of course, the most popular way to collate this sort of thing would be a Facebook group or maybe a YouTube channel. But we want to reserve the rights to these, and also have the freedom to share them or link to them on other sites. What are some alternatives?
So: what advice can we share with Kathleen and her students?
For example, does Facebook’s broad reach make it the best platform to use despite its drawbacks (which I’ve written about here and here)? What are some alternatives for uploading photos, sharing ideas, but maintaining some control over them? Flickr? Tumblr? A quick and easy blog?
How about YouTube? I’ve seen lots of health videos shared on Vimeo, Viddler, and other platforms but don’t know the differences between each one. If you do, please share!
Another useful resource: Creative Commons, which “develops, supports, and stewards legal and technical infrastructure that maximizes digital creativity, sharing, and innovation.”
Please share ideas in the comments.