The past 40 years of augmentative and alternative communication (AAC) research has done little to improve our lives. Most of us still do not have access to robust AAC; we remain largely segregated, under-educated, isolated, and institutionalized. The most impactful change for our community during that period has been the introduction of the iPad, which had nothing to do with AAC research.
CommunicationFIRST is working to ensure that future research focuses on issues that most impact our community, and that AAC users drive and participate in research about us. In the spring of 2024, we publicly recruited a diverse group of AAC users who were willing to be interviewed on camera about their priorities for AAC research. Our interviewees hail from 10 different states, and are aged between 20 and 74. Each of the interviewees use different forms of AAC, from human revoicing to speech generating devices with a variety of access pathways and software programs, including one that has synthesized the AAC user’s own voice. Each interviewee also has different reasons for needing AAC, such as dystonia, vocal cord paralysis, and repetitive traumatic brain injury, for instance.
13 AAC Users: Priorities for Future Research (transcript)
13 AAC Users: Priorities for Future Research premiered at the Future of AAC Research Summit on May 14, 2024. At this first-of-its-kind summit, CommunicationFIRST and the RERC on AAC brought together AAC users, academic researchers, federal funding agencies, developers, and service providers so decisionmakers could learn directly from these film interviewees and many more AAC users who presented “live” or remotely during the Summit.
“I’m so grateful for all CommunicationFIRST’s hard work on this,” said interviewee Sarah Price Hancock. “We desperately need improvements and have advanced so far in technology [that] there’s really no reason research hasn’t yet expanded to improve [our] quality of life.”
It was very difficult to edit more than five hours of compelling footage from Sarah and all the other interviewees down to 17 minutes. The 13 interviewees (in order of appearance) are: Ashley Mohesky, Mike Hipple, Pancho Ramirez, Niko Boskovic, Esther Klang, Beth Papp, Jessica Frew, Sarah Price Hancock, Benjamin Smidt, Yoosun Chung, Hridhay Bashyam, Catlaina Vrana, and Devva Kasnitz.
13 AAC Users was produced as an independent project apart from the AAC Research Summit. Thanks to the WITH Foundation for its generosity in making this film possible, and of course, to our interviewees.