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.
Susannah,
I’m sure John Wilbanks would have much more to offer on this subject, but I’m not sure what “rights” your interlocutor is concerned about. Are they interested in retaining, for example, a commercial license? I think that Vimeo’s terms of service are more “user-friendly” than YouTube’s for sharing video content. Flickr allows a user to retain more photo rights than Instagram does. Neither of them allow a user to retain all rights.
However, if the concern is “how can I make my project ‘go viral'” that becomes very difficult in a world where the originator wants to retain all rights. In order for an individual to “share” a fully-copyrighted bit of content, the individual would need to contact the copyright holder. This could potentially be onerous if there’s an “exponential” increase in sharing.
Last, I’d offer this link to general queries of the: “How do I make this go viral” sort – https://www.youtube.com/watch?v=b7Nxyqi4WK0
My guess if you’re going to Storify Wilbanks response as well.
Thanks, Dave! I will capture our conversation with John on Twitter for the comments here.
I’ll let Kathleen answer your good question about “rights” (a word that does deserve scare quotes so we all can acknowledge its many meanings and implications, like “privacy” or “Web 2.0”).
The moment I published this I saw that my former colleague Aaron Smith had posted a great essay about how half of U.S. adults don’t really know what a privacy policy is:
http://www.pewresearch.org/fact-tank/2014/12/04/half-of-americans-dont-know-what-a-privacy-policy-is/
I suspect they know even less about copyright as they go about their business online. I’m learning along with Kathleen about some nuances!
Here’s Dave’s tweet sending up a Bat Signal to John Wilbanks:
https://twitter.com/DCDave/status/540516042171514880
Since Twitter is a notoriously bad archive, I’ll grab the text of the conversation and paste it here (excuse the brevity and punctuation etc):
DC: Hey @wilbanks – @SusannahFox has a interlocutor who wants to know what the “Best” service for sharing content and retaining rights is. Halp.
JW: I am very tempted to reply with a snarky gif, but there’s a very real pleading in there for understanding.
JW: The reality is that copyright already grants all the rights the person wants if they use youtube for this.
JW: (or, better, would be vimeo). but (c) drops down from the skies and gives the protections desired. rights are reserved.
JW: now if you want to control *who is allowed to link or why* that is a protection that goes beyond (c) into rights mgmt.
JW: and at that point you’re into working with this guy and his ilk. pic.twitter.com/JkOjkw7wDV
SF: Honest question: what is Vimeo’s advantage? More controls? Same for Viddler, which seems built to be share-unfriendly.
JW: vimeo’s terms of service are far more friendly to the poster, as the goog takes very permissive rights in its contract.
JW: vimeo allows CC or full (c). very sharing friendly. but can’t restrict linking once online at all…without nastiness.
JW: i don’t know fiddler.
SF: Health 2.0 uses it for all their conference videos. Have to extract like a tooth to embed on another site.
DC: Is it a combination live-stream/repository service? Probably paying user fees for it on their end.
Phew! I hope some of that makes sense — fire away with questions or comments.
Kathleen, Susannah,
Educating the public even with the wide exposure offered by the social sites, is difficult. I suggest the following parallel effort which brings additional benefits. :
The uCaring.com Group Services are designed to bring like-minded people together to work on a formal mission and goals. Goals for content, goals for reaching out by holding local events and speaking to other groups, and so on, are opportunities to strengthen the group and achieve the awareness needed for any group seeking awareness, promoting their cause, or making a difference.
There are great benefits and amazing results possible when a committed membership is engaged on a regular basis with news, examples, activities, feedback on successes, rules, scripts, checklists, and the encouragement to do their part in doing the right thing.
These new services are just announced and available now. The personal safety services are available to everyone at no cost. The group services are very low cost and they will be free to qualified groups with do the right thing intentions, which I believe means your group.
Please let me know if we can help.
Best,
Mo
Update: Kathleen Bogart and her team chose the public route, asking people to post photos to a special Facebook album or to Instagram or Twitter. Details here:
http://liberalarts.oregonstate.edu/sps/dsil/moebius-syndrome-awareness-project