Digital Youth with Disabilities: An Interview with Meryl Alper (Part Two)

  You hint here that our perceptions of what kinds of media are appropriate for youth with disabilities tends to prioritize educational and assistive technologies over the use of new media for recreational and social purposes. What are some of the implications of these biases?

I get frustrated when talk of children with disabilities and technology drifts into a common trope in which disability is imagined as a problem that needs solving, and technology (in school and therapeutic settings) provides the solution. One implication is that it perpetuates the idea of children with disabilities as “poster children” (Longmore, 2013), defined primarily by their medical needs and deserving of charity. Often—as one of my dissertation committee members, Beth Haller, has written—technology or technologists (usually able-bodied) are emphasized in the popular press for the good they do for people with disabilities. There is far less emphasis on the ways in which individuals with disabilities appropriate and adapt technology, and are active consumers, creators, and circulators of media. For example, Bess Williamson has pointed out ways in which individuals with disabilities were pioneers of maker culture in the post-WWII era.

Another is that digital media researchers are missing opportunities to study and learn from youth with disabilities. For example, there is exciting work being done by a fellow Ph.D. student, Kate Ringland at UC Irvine, on parent and youth participation in a Minecraft server called Autcraft, which is a dedicated space for individuals on the autism spectrum. There is a lot to be learned in Autcraft not just about autism, but also with respect to the methods of digital ethnography and the study of social norms and reciprocity.

Lastly, it is also important to understand the ways in which youth with disabilities figure into what we already know about how kids are “hanging out, messing around, and geeking out” (or the ways in which they are being excluded) so that they too are able to reap the benefits of a more participatory culture. Most high-tech educational and assistive devices are beyond the financial means of many families without additional financial support from school districts or health insurance. Parents express feeling like the professionals that work with their children lack an understanding of their family media habits (Nally, Houlton, & Ralph, 2000). Without understanding the media ecologies of youth with disabilities more fully, and their use of everyday tools like YouTube or Snapchat, the well-intentioned introduction of these technologies across the settings where children learn may not be as effective.

You spend a large chunk of the book dissecting and critiquing the concept of “screen time.” Why has this been such a problematic way to formulate policies shaping media use within family life? Why is this concept especially inappropriate for thinking about media consumption/participation by youth with disabilities?

For those unfamiliar, over past 15 years, the phrase “screen time” has come to signify how much time children spend with the growing array of screen-based media and technology. It entered the popular vernacular in 2001, as part of a policy statement issued by American Academy of Pediatrics (AAP), the leading professional group for pediatricians in the U.S. While child development experts (especially psychologists) have weighed in on children’s media use since days of radio, in the 1970s, pediatricians and the AAP began a more concerted effort to make public statements on children and media. In its current incarnation, the AAP’s policy statement on children and media specifically targets “entertainment screen media” (which is still a pretty sweeping category).

The AAP statements make the relationship between media and children seem far more clear and simple than the research actually indicates. In the book chapter, I detail a few ways in which screen time is generally a flawed concept: its oversimplification of the notion of family “time”; its negative characterization of “entertainment screen media” content as something to be avoided; its unproved hypothesis that screen time directly displaces other activities children might otherwise be doing (like homework or playing outside); and its lumping together of all screen-based communication technologies even though they have very different capabilities. I also discuss each of these critiques in relation to children with disabilities.

There also seemed to be an aspect of screen time that was potentially harmful to children with disabilities and their families. I detail in the chapter how screen time presumes a child whose diet and exercise, sleep, and attention would be “normal” were it not for screen media. This standard is implicitly projected as the ideal media-using child and essentially “others” children with disabilities. Thus, screen time is inherently “ableist,” a worldview in which disability is understood as aberrant—something for statisticians to “control for” in their data—and not a natural human difference.

I have an example from my dissertation fieldwork of how screen time can perpetuate ableism in everyday life. I conducted an interview with a mom, Perri, whose preschool-age son, Cory (both pseudonyms), has a developmental disability that impairs his ability to produce embodied oral speech. Cory primarily “talks” using an iPad with an app called Proloquo2Go. The system provides him with text-to-speech features and tools for selecting words, symbols, and images to communicate his thoughts. Perri told me that she was “of course” worried about the negative impact of “screen time,” but “as a special needs parent, you have to block out the rest of the world.” Perri felt guilty for sometimes falling on the wrong side of screen time guidelines; for example, the only thing that helped Cory sit still during difficult 45-minute daily medical treatments was watching a DVD.

She detailed a social situation that required her to shut out dominant cultural messages about screen time. When her and Cory go to the playground, she said, she feels that other parents are judging her. They must be thinking, Perri told me, “‘Look at that parent, giving that child an iPad.’” She assumed that other parents associated letting a child use an iPad on a playground as a poor parenting move. To be fair, from the vantage point of the other parents, they might not know what else Cory could possibly be using the iPad for besides recreation. He does not visibly appear to have a disability from the opposite end of the playground—he is not in a wheelchair, he can walk, and he has a lot of energy. However, the situation for Perri and Cory would be much improved by greater societal awareness about how screen media serves different purposes in the lives of diverse families. Perri should not have to “block out the rest of the world”—those on the opposite ends of the playground should be less quick to judge her and her son. A serious dialogue about screen time and disability is but one starting point to create a more enabling and supportive environment for Perri and her son.

Meryl Alper is a Ph.D. Candidate in Communication at the Annenberg School for Communication and Journalism at the University of Southern California.  She studies the social and cultural implications of networked communication technologies, with a particular focus on disability and digital media, children and families’ technology use, and mobile communication.  Prior to USC, she worked in the children’s media industry as a researcher and strategist with Sesame Workshop, Nickelodeon, and Disney.  She can be found on Twitter @merylalper and online at merylalper.com