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Social networking with Self-Advocacy Online

We usually think of our rights once they are taken away, but for peoplewith developmental disabilities, having universal access and equalrights is a daily struggle. ?Self-advocacy is a civil rights issue,?says Jerry Smith, award-winning filmmaker and media producer for the Research Training Center on Community Livingat University of Minnesota?s Institute on Community Integration. ?Inbasic terms, self-advocacy is about people with developmentaldisabilities having control over their lives, over their own medicalcare. It is also about organizing a social and political movement,?adding that people with intellectual disabilities have far fewer rightsthan most, due in large part to challenges communicating what they want.

Smith and others at the Institute for Community Integration want tochange that. With a 2007 HASTAC/MacArthur Digital Media & Learningaward, the Institute built,an online social network for members in the developmental disabilitycommunity, the first of its kind in the world. ?We started off lookingat Ning, to see how other groups were using social network platforms,?says Smith. ?But we have people using our site with intellectuallimitations, such as trouble with abstract thinking and memory issues,and we need to create a site that they can use. So we plan to use morestorytelling, and to bring in multimedia.?

Being able to communicate is fundamental to self-advocacy, which, forpeople with developmental disabilities?including cognitive andintellectual disabilities?has not come so easily. While there is stillwork to do, we have come a long way over the past century.

Given the possibilities for communication in an online social network,the benefits for self-advocates could be profound. According to Smith,?There is great potential for self-advocates here, since it could helpnetwork the 800 or so self-advocacy groups in the U.S. Many groupsaround the country don?t have websites, so we want to create a placefor them to go.?

To test the idea, Smith and staff from the Institute offered sixtrainings to People First Minnesota, an organization that supports?self-advocates training self-advocates.? Smith was encouraged by theexcitement among users, particularly the youth. ?What worked reallywell was to have questions of identity,? says Smith, observing the wayyounger users could select and modify their online identities. But thetrainings also raised questions.

?We were pleasantly surprised at how well young people just get it,?says Smith, ?but we had to come up with a template that was accessibleso people could enter their information using simple tools.? Dr.Patrica Salmi, a researcher for the site and expert in wayfinding,writes that, ?Access to communities and activities is of vitalimportance to all members of a community?including those withdisabilities.? For people with low literacy rates and language skills,this means relying less on text and more on design elements to guidepeople to their destination.

On the site, users can find other self-advocacy groups around thenation by clicking on a map, or they can use drop-down menus. Those whowant can use the ?site builder? template to create a website in severalstraightforward steps. A Learning Center page features blocks of topicsranging from healthy living to cultural competence to a variety of waysto foster self-advocacy.

Wayfinding has its roots in the built environment, but with Webenvironments growing more complex and information rich, there areobvious cross-over implications to virtual worlds and online networks.And for those with developmental disabilities, writes Salmi, successfulwayfinding?online or off?is essential, ?Since community settings mustaccommodate an increasingly diverse population, it is critical thatthey be designed to be as inclusive and universally accessible aspossible.?

Bringing digitalmedia and social networking to the mix may help one voice become many,advocating for change.


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