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

Meryl Alper's new book, Digital Youth with Disabilities, releases shortly via the MacArthur Foundation's distinguished series of reports on Digital Media and Learning, published by MIT Press. Alper is currently one of my PhD Candidates at USC's Annenberg School of Communication and Journalism, where she is writing a dissertation under my supervision sharing what she's learned through interviews and observations of the families of youth in Los Angeles who use adaptive technologies to help them deal with speech disabilities. Alpert came to me a few years ago having already had a distinguished career working in and around children's media, including having worked with the Sesame Workshop's Education and Research Department where she had done field work investigating the potential for developing an animated series focused on media literacy, with Northwestern University's Children's Digital Media Center where she worked directly with Barbara O'Keefe (a legend in the space of children's media) and most recently, with the research division of Nick Jr. where again she did work with preschool aged children.

Since coming to USC, she has been part of a team at the Annenberg Innovation Lab which developed a white paper in collaboration with the Joan Ganz Cooney Center, T is For Transmedia, which I have featured here before. She has increasingly been focusing her attention onto the roles new media play as adaptive and assistive technologies for families who are living with disabilities. Her work, as you will see, emphasizes the social contexts within which these technologies are situated, a topic she writes about with enormous nuance and empathy; she explores the processes by which youth and their families develop voice and assert control over their lives, while negotiating with powerful institutions, especially schools but also the medical establishment, over access to and control over these technological resources.

I am so proud of what Alper has accomplished during her time at USC and know that she is going to become an outstanding professional as she enters the academic job market this year. I wanted to use this post to call attention to her book.

You begin the book with some of the ways that the concept of disability has been rethought through critical/feminist disability studies. To what degree have these insights been translated into terms that can be understood by educators, policy-makers, and parents? Is there a gap here between theory and practice?

Before diving in, I’ll give a brief overview of some of the key intersections between disability studies and critical studies, before discussing how these theoretical developments translate to the U.S. context of education and learning.

Disability is a constantly evolving concept, and my book partially captures it at one particular moment in history. It is a dimension of human difference, while also containing a multitude of differences. For example, while some disabilities are more visible and permanent (e.g. Down syndrome, paralysis), other conditions are less immediately apparent and fluctuate in severity more frequently (e.g. chronic fatigue syndrome, multiple chemical sensitivities).

Two broad ways of thinking about disability initially grew out of the field of disability studies: a medical model of disability, in which disability is understood as undesirable, individualized, and defined by deficit; and a social model, which distinguishes between impairment (as bodily difference) and disability (as the social and structural environment that disables different bodies).

A critical approach to disability studies challenges both models. While the medical model offers needed medical solutions for pain, discomfort, and fatigue, political and social transformations are also needed to make the world more accessible and safe for individuals with disabilities, their families, and caregivers. The social model does not account for the ways that disability is experienced on an individual level, the ways that impairment and disability mutually shape one another, and how these social constructions shift depending on time and place.

Critical feminist/queer disability studies scholars (including Robert McRuer, Alison Kafer, and David Serlin) offer ways of looking at disability as political that question overlapping status quos of power and privilege. It is important to note that people with disabilities are the largest minoritized group in the U.S.—19% of the population according to the U.S. Census. Critical disability studies is engaged with other disciplinary traditions that also challenge systems and structures of oppression, such as feminist studies, queer studies, ethnicity and race studies, and indigenous studies. To study any form of institutionalized discrimination in 2014 necessitates disentangling interactions between class, gender, sexuality, race, ethnicity, nationality, language, age, and especially disability.

The insights of critical disability studies are far from fully incorporated into educational practice and policy in the U.S. On a macro level, the U.S. education system is centered on the “normal” student, sorting and measuring ability through the big business of standardized testing. The system is designed to prepare students to make a “productive” contribution to society. However, this model of productivity is based on narrow ideas about what it means to contribute, primarily by adding economic value to the workforce. The ideal graduate of the U.S. educational system is nearly always able-bodied and able-minded. Critical disability scholars push back against a society that seeks to cure, rehabilitate, or make disability go away, and seeks alternative models of community and coalition building.

Another area where a critical disability studies intervention is needed is in addressing disparity among youth with disabilities. Black males are overrepresented in the high-incidence disability categories of intellectual disability, emotional disturbance, and learning disabilities (Aud et al., 2013; Ford, 2012). Though youth with disabilities comprise 13% of all U.S. students aged 3-21 (according to the U.S. Department of Education’s National Center for Education Statistics), they make up 25% of students receiving multiple out-of-school suspensions, 23% of all students getting a school-related arrest, and 19% of expelled students (Lhamon & Samuels, 2014).

If any group has done the most to translate the insights of critical disability studies for parents, policy makers, and educators, it has been students and individuals with disabilities (who may also be parents, policy makers, and educators themselves). Unlike most people in the field of disability studies, I do not currently identify as an individual with a disability, and I am not the parent, sibling, or partner of someone with a disability. I have to work very hard to see things from a point of view that I cannot fully understand. I personally look towards organizations such as the Thinking Person’s Guide to Autism and disability rights activists such as Lydia Brown for their leadership in bridging theory and practice.

You also were one of the co-authors of T is for Transmedia, which advocated for transmedia play and learning. In what ways would the multimodality associated with transmedia enhance or detract from the media experiences of youth with disabilities?

A small but growing body of research suggests that emerging readers and writers with physical, cognitive, and intellectual disabilities may benefit from expanded opportunities to draw on their experiences with popular culture and leverage their multimodal text-making abilities (Flewitt, Kucirkova, & Messer, 2014; Peppler & Warschauer, 2012). However, the benefits or drawbacks of transmedia play for any one child depends not only on their specific set of abilities and disabilities, but—taking a more ecological approach to human development—also the social, cultural, and political context that underpins the child’s learning experiences in and out of the classroom.

I’ll provide an example from my dissertation research that illustrates these possibilities and limitations. Kevin is a non-speaking, 13-year-old mixed-race autistic boy from a lower-middle income family. While he is unable to articulate his grasp of the English language through embodied oral speech or handwriting, his mother, Rebecca, indicated that he demonstrated strength in print literacy and an array of new literacies including technological fluency and visual literacy.

She drew heavily on instances of her son’s media use to talk about his verbal abilities. For example, Rebecca told me that Kevin used the letter tile game Bananagrams to spell “‘Indiana Jones’ before he could spell his own name.” The Harry Potter DVD menu in particular provided rich seed material. Said Rebecca, “He would spell ‘prologue.’ Prologue was his word. Prologue, prologue, prologue. Then he would spell ‘quidditch pitch.’ He would spell ‘Florean Fortescue’s Ice Cream Parlour.’”

Kevin’s wordplay with the language of DVD menus provided an opportunity for learning. However, clinicians, behavioral therapists, and sometimes parents tend to pathologize repeated viewing of movie credits by autistic youth (Liss, Saulnier, Fein, & Kinsbourne, 2006). Though Rebecca described Kevin’s transmedia play as a positive pathway to spelling, certain kinds of play by disabled children often gets promoted or prevented depending on the various institutions in which their learning is embedded (Goodley & Runswick-Cole, 2010).

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