Submitted by slgrant on Mar 03, 2009, 08:00 PM
We usually think of our rights once they are taken away, but for people with developmental disabilities, having universal access and equal rights 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 Living at University of Minnesota?s Institute on Community Integration. ?In basic terms, self-advocacy is about people with developmental disabilities having control over their lives, over their own medical care. It is also about organizing a social and political movement,? adding that people with intellectual disabilities have far fewer rights than most, due in large part to challenges communicating what they want.

Smith and others at the Institute for Community Integration want to change that. With a 2007 HASTAC/MacArthur Digital Media & Learning award, the Institute built SelfAdvocacyOnline.org, an online social network for members in the developmental disability community, the first of its kind in the world. ?We started off looking at Ning, to see how other groups were using social network platforms,? says Smith. ?But we have people using our site with intellectual limitations, 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 more storytelling, and to bring in multimedia.?

Being able to communicate is fundamental to self-advocacy, which, for people with developmental disabilities?including cognitive and intellectual disabilities?has not come so easily. While there is still work 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 help network the 800 or so self-advocacy groups in the U.S. Many groups around the country don?t have websites, so we want to create a place for them to go.?

To test the idea, Smith and staff from the Institute offered six trainings to People First Minnesota, an organization that supports ?self-advocates training self-advocates.? Smith was encouraged by the excitement among users, particularly the youth. ?What worked really well was to have questions of identity,? says Smith, observing the way younger users could select and modify their online identities. But the trainings 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 accessible so 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 vital importance to all members of a community?including those with disabilities.? For people with low literacy rates and language skills, this means relying less on text and more on design elements to guide people to their destination.

On the site, users can find other self-advocacy groups around the nation by clicking on a map, or they can use drop-down menus. Those who want can use the ?site builder? template to create a website in several straightforward steps. A Learning Center page features blocks of topics ranging from healthy living to cultural competence to a variety of ways to foster self-advocacy.

Wayfinding has its roots in the built environment, but with Web environments growing more complex and information rich, there are obvious cross-over implications to virtual worlds and online networks. And for those with developmental disabilities, writes Salmi, successful wayfinding?online or off?is essential, ?Since community settings must accommodate an increasingly diverse population, it is critical that they be designed to be as inclusive and universally accessible as possible.?

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