“Disability is central to the human experience,” writes Meryl Alper in the opening chapter of her book, “Digital Youth with Disabilities.”
The report summarizes how children with disabilities use media for social and recreational purposes and identifies areas where more research on the topic is needed.
“At one time or another, those of us who are ‘temporarily able-bodied’ will become disabled, whether as part of the aging process or unexpectedly at any age,” says Alper, a USC doctoral candidate in communication. “People with disabilities have the same human rights to live with dignity and self-worth as those without disabilities. Yet, significant cultural, technological, political and economic barriers continue to limit the full societal participation of children and adults with disabilities in the digital age.”
Among the statistics cited in the book: 54 percent of adults with disabilities in the United States report that they use the Internet, compared with 81 percent of adults without disabilities and fewer households headed by someone with a disability in the U.S. report owning a computer (53 percent) than do all U.S. households (76 percent).
“Lack of Internet connectivity impacts the extent to which individuals with disabilities can seek health information, find employment, learn about events in the world, and enjoy all the ordinary, mundane, and everyday activities that people do online. It is not just individuals with disabilities and their families who are impacted by this exclusion but also society at large, which loses out on their contributions,” Alper notes.
She recently answered a few questions about her research.
What are some false assumptions people make about children with disabilities and their use of technology?
There are many misleading yet common assumptions about youth with sensory, cognitive, and physical disabilities and their use of information, media, and communication technologies. (Please note that I use both “youth with disabilities” and “disabled youth” interchangeably in my responses here out of respect for how people with various disabilities and cultural backgrounds themselves prefer to be named).
Popular ideas about their media and technology use tend to veer into either utopian or dystopian territory, with little nuance in between. For example, all sorts of technologies over history — including radios, computers, and now even 3D printers — have all been popularly imagined as nothing short of miraculous cures for disabled youth. Those with disabilities are often portrayed as being broken or incomplete, and technology (and technology developers) is figured as single-handedly fixing or completing them. Meanwhile, it has also been insinuated in numerous news reports that children with various disabilities (such as autism and ADHD) are predisposed to be “addicted” to video games and TV, and that these “low” cultural forms universally lead to “problem behaviors.”
These optimistic and pessimistic stories are more alike than they might seem. Through both inspirational narratives and cautionary tales, disabled youth in U.S. society tend to serve as placeholders onto which the majority able-bodied culture projects their hopes and anxieties, and not as citizens with human agency. These extremes distract us all from seeing youth with disabilities as children whose experiences with media and technology can be ordinary and even mundane. It precludes researchers from asking nuanced questions about the social context of disabled children’s media use. And, it masks the ways in which other dimensions of difference — such as class, race, ethnicity, gender, and nationality — shape their daily engagement with technology. The consequences of these myths are far reaching though little understood.
How can family members, caregivers and educators of children with disabilities help them access and use technology to their advantage?
Research has shown that whatever support educators and therapists provide for these children and their families needs to be sensitive to their cultural differences and preferences — just as digital media and learning researchers would consider among families without children with disabilities. For example, there is a certain futility to suggesting an English-only iPad game that purportedly supports self-regulation among autistic youth if it is only available for Apple devices (which is beyond the price range of many families) and only in English (which can preclude the participation of non-English speaking parents). Supporting youth with disabilities and supporting their parents and caregivers goes hand in hand. That support might best come in the form of a one-on-one technology workshop for one parent with less comfort with digital media, and a webinar series, blog, or Facebook page for another parent with more expertise and formal education.
Where are you taking this study?
“Digital Youth with Disabilities” ends with a call for research on the family context of disabled children’s media and technology use, a call that my dissertation takes up in part. In the dissertation, I focus on parents specifically, and how they learn to navigate their disabled child’s engagement with digital media in the context of the home, but also in relation to spaces outside the domestic sphere like school, among extended family members, and in the local community. Through qualitative research with 20 families over 16 months, I found that class and discrepancies in access to economic, social, and cultural capital significantly shapes both how parents come to view technology in their child’s life, as well as how the social institutions that they encounter (such as school districts and therapy providers) recognize and address their needs.
My dissertation looks specifically at youth with developmental disabilities who are unable to or who have significant difficulty in producing embodied oral speech, and who use an iPad either as a speech supplement or replacement. While I spent time with children with a range of disabilities (including cerebral palsy and rare genetic disorders), the majority of children ended up being on the autism spectrum. As a result, I expect my next big project to be a qualitative study of how autistic youth engage with media and technology in their everyday lives, how their parents make sense of it all, and how this potentially varies across families of different socioeconomic backgrounds.
Autistic youth are often characterized as being naturally “tech-savvy.” However, as with the “digital natives” fallacy (that young people are naturally good at digital media), this misperception can mask complex intersections with class and gender, as well as individual variations in children’s preferences. For example, one mom I spoke with, Daisy, said of her autistic son, Thomas: “My son never really touches the computer. Thomas is not one of those. He’s not into the PS2. I bought it, but [laughs] I’m the one that ends up playing with it. He’s not into any gadgets. He’s not a ‘techy’ person.” While there has been some survey research on autistic children’s media and technology use, there is a significant lack of ethnographic work and qualitative scholarship that accounts for working-class, non-white, and/or non-male autistic children and what media and technology use means to them and their families. In the next stage of my work, I plan to address this gap.