“Making a difference. One app at a time”? : Disability, Distinction, and Domestic Access

The new media landscape for youth with communication disabilities is currently undergoing a significant technological and cultural shift. Costly traditional electronic speech aids (used most famously by physicist Stephen Hawking) are increasingly being replaced with more affordable, accessible, and socially acceptable tablet computers such as the Apple iPad and assistive speech apps. With these communication technologies, youth and their families have the potential to develop voice and assert more control over their lives. However, it is crucial that we avoid using technological and social determinism to explain the adoption and use of these tools. Over the course of 16 months, I observed and interviewed parents of 20 non-speaking children ages 3-13 in the Los Angeles area who have developmental disabilities such as autism and who communicate using the iPad and the most popular assistive speech app, Proloquo2Go. Drawing on theories of cultural capital and structural inequality, I argue that parents’ ability to mobilize distinctive social, economic, and especially cultural resources shapes their interactions with the clinical, educational, and media systems regulating these technologies. I suggest ways in which various stakeholders—including policymakers, practitioners, and engineers—can apply these findings so that more youth with communication difficulties—not just those who are privileged—can speak and truly be heard. Moving forward, supporting youth and adults with disabilities requires us to trace the broader role of what I term “networked immobility” in how disability and other dimensions of difference are experienced in the digital age.