Disability, Mobile Media, and Family Life

(This post originally appeared on the HASTAC Scholars website.)

Hello HASTAC scholars, mentors, and the rest of the internet!

Having turned the corner and passed my qualifying exams in September, my research focus has narrowed and deepened as I enter the dissertation phase of the Ph.D. program here in Communication at USC Annenberg.  My dissertation is tentatively titled “Home Screen Home: How Parents of Children with Communication Disabilities Navigate Family Media Use.”

My project is an ethnography of LA area parents whose children ages 3-13 have developmental disabilities (e.g. autism, cerebral palsy) and significant difficulty producing embodied oral speech.  Though they may not “talk” in the traditional sense, these children use the iPad and the app Proloquo2Go to produce synthesized speech.  Some of these iPads are purchased by parents, and others are provided by the child’s school district.  Some of these iPads are used by children primarily for what is known as “augmentative and alternative communication,” and some of these iPads are also used by kids to watch YouTube, play games, and take pictures.  So much to write about – let’s just say it’s a very interesting time to be studying iPads that go back and forth between home and school among Los Angeles public school students!

My dissertation aims to address the following question: How are parents of children with complex communication needs negotiating the introduction of this technology into their lives?  I have three expected outcomes: 1) to better theorize about the relationship between embodiment, mediated relationships, and interpersonal communication; 2) to uncover richer understandings of the role of new media technologies in contemporary family life; and 3) to disentangle how notions of ability and disability help construct dominant conceptions of childhood in the digital age.

I’m very pleased to have finalized my dissertation committee, an all-star team including my advisor (and personal Yoda) Henry Jenkins (USC – Communication), Ellen Seiter (USC – Cinema), François Bar (USC – Communication), and Beth Haller (Towson University – Mass Communication).  Among many things, Henry is an expert on social and cultural shifts in new media.  Ellen is one of the foremost scholars on parents and consumer culture, as well as digital media and learning.  François focuses on the social impact of new media, particularly user-driven innovation and technology appropriation.  Beth is an expert on all things media and disability, and I’m really excited that she’s agreed to be on my committee as a non-USC faculty member.

It was incredibly rewarding last year to collaborate with a number of HASTAC scholars on a forum entitled, Dis/Ability: Moving Beyond Access in the Academy, a resource I continually find myself returning to.  I’m interested in continuing to learn and share best practices when it comes to increasing accessibility in the classrooms we currently teach in and aim to teach in, continually and reflexively inquiring into the social, cultural, and political conditions shaping definitions of access and mobility.

I’ve been pleased to connect with scholars of disability and technology this fall, including Mara Mills (NYU) and Kevin Gotkin (UPenn) at the Society for the History of Technology (SHOT) conference.  Mara posted a really provcative prompt on the SHOT website, regarding the opportunities for dialogue between disability studies and science and technology studies – a great sampling of key texts in that space.

Feel free to reach out to me on Twitter (@merylalper) or check out some of my other musings at merylalper.com.  I look forward to learning more about the latest cohort of HASTAC scholars!

Best, Meryl

Looking Ahead to IDC 2013

(This post first appeared on the Joan Ganz Cooney Center at Sesame Workshop blog.)

idc_logo1During some recent spring cleaning, I decided to part with an unwieldy knot of academic and media industry conference nametag lanyards, amassed over the past three years of my Ph.D. program.  Upon returning home from each conference, I would hang them from a particular doorknob in my apartment, a pile that grew more dusty than decorative.  Before tossing the badges though, I took a quick glance at each.  The details of some conferences were easier to recall than others.

One of the more memorable conferences that stood out, and continues to stand out among the rest, is the annual Interaction Design and Children Conference (IDC).  Each year, IDC brings together the top minds in academia and industry to share the latest research findings, innovative methodologies, and new technologies in the areas of inclusive child-centered design, learning and interaction.

This year’s conference, to be held June 23-27 in NYC, will be particularly memorable because it is the first IDC to be co-hosted by both academic (The New School) and industry (Sesame Workshop) organizations.  Conference co-chairs Dr. Nitin Sawhney (The New School), Emily Reardon (Sesame Workshop), and Dr. Juan Pablo Hourcade (University of Iowa) have been planning some really exciting programming.  I have the honor of serving as both workshop and publicity co-chair for IDC 2013 with Dr. Shuli Gilutz (Tel Aviv University).

IDC is both part of a larger community and creates its own special community.  The conference is held in cooperation with the Association for Computing Machinery Special Interest Group on Computer Human Interaction (ACM SIGCHI), and so is most closely aligned with the field of human-computer interaction.  There will be a vibrant mix of brilliant folks who more closely identify with other fields though, including computer science, communication, child development, educational psychology, engineering, digital media, game design, and learning sciences.  The conference is inclusive of academics and industry professionals, professors and students, and practitioners in formal and informal learning settings.  IDC is also unique in that it is a “single track” conference, meaning that each main conference presenter presents to all conference attendees at once.  Lunch is also provided for all attendees each day to foster continued conversations between morning and afternoon sessions.

I’m particularly excited about the following offerings at this year’s IDC (full program here):

  • The opening keynote speaker, David Monina Sengeh, a doctoral student at the MIT Media Lab, will be talking about the mentorship program he created in his native Sierra Leone for youth to work in teams to create new ideas for DIY projects related to health, agriculture, crafts, and entertainment in their communities.  David will be accompanied by Kelvin Doe, a young teenage student from Sierra Leone who created a radio transmitter built from salvaged parts and broadcasts his own local programming under the name DJ Focus.
  • As reflected in the keynote, this year’s conference places a special emphasis on supporting DIY/maker culture among children and global inclusion, particularly for marginalized children worldwide.  Along this theme, I’m personally excited to take part in a conference workshop on designing fabrication tools for youth with disabilities.
  • The topics for the full paper sessions all reflect very current issues in the world of children, media, and technology.  These include physical movement and play, family-based interaction, computing and programming, and communication and self-expression.
  • There will be a hands-on “maker” party and dinner reception at the New York Hall of Science on the night of Wednesday, June 26.  The children of IDC attendees are welcome, and there will be round-trip buses to and from the New School.
  • On Thursday, June 27, there will be a special panel and moderated discussion with Google user experience researchers working on various projects with youth populations.  I’m very interested in hearing more about their research and experiences.
  • The closing panel later that day brings together an all-star panel of child-computer interaction researchers discussing the influential work of Dr. Seymour Papert of the MIT Media Lab.

If you’re going to IDC 2013, please say hello!  I’m not sure if my nametag will eventually end up back on my doorknob or in the trash with the others, but I hope to put it to good use at least while I’m at IDC.

Making Space in the Makerspace: Building a Mixed-Ability Maker Culture

I had the pleasure of giving an Ignite Talk last week at the MacArthur Foundation’s Digital Media and Learning Conference on the topic of “mixed-ability maker culture.”  By mixed-ability maker culture, I mean a collaborative culture within which people with and without disabilities can co-exist and co-create as they work to maximize and develop their own skills.  I’m at the early stages of this work, so it was a real gift to be able to share some of my thoughts with the brilliant and critically engaged DML community.

T is for Transmedia: The Pedagogical Promise of Transmedia Play

(Re-posted from the Joan Ganz Cooney Center at Sesame Workshop blog)

by Rebecca Herr-Stephenson, Ph.D and Meryl Alper

Today we are thrilled to release a new report, T is for Transmedia: Learning through Transmedia Play. This report, which we have co-authored along with Erin Reilly, and which begins with an introduction by Henry Jenkins, is the product of a year-long collaboration between the Cooney Center and the Annenberg Innovation Lab at the University of Southern California.


Transmedia is an idea that has evolved over the past decade to describe the complex relationships that exist between media texts, media producers, and media audiences who actively and resourcefully engage with characters, plots, and events.  Transmedia storytelling, as our collaborator Henry Jenkins has put forward, is a way for audiences and producers to shape media content and negotiate meanings across multiple platforms, with each unique element contributing to a fuller story world.  We, along with other scholars, media producers, and educators, see great potential in transmedia for supporting learning and literacy development.

In this research, we looked carefully at numerous children’s media properties, play spaces, and play and performance-based programs to tease out the characteristics of transmedia that seem to best foster learning. From Harry Potter to Project Lamp, Story Pirates to Minecraft, we surveyed numerous opportunities for transmedia play currently available, focusing on those designed for children between the ages of 5 and 11. One of the key characteristics we observed in our review of transmedia experiences is the existence of rich story worlds that encourage reading across media and digging deeply into narratives and topics of interest.

T is for Transmedia is our attempt to summarize, synthesize, and spark discussions about children learning through their engagement with transmedia.  As media producers increasingly look to transmedia as part of a strategy for incorporating new media into new and existing properties and as educators look ever more to new media as a site for meaningful learning opportunities, we suggest ways in which transmedia can be a resource for learning in various contexts, including schools, expanded learning programs, and at home.  We promote the idea of “transmedia play” as a way of thinking about children’s experimentation with, expression through, and participation in a transmedia experience that acknowledges their cultural engagement, respects their thoughts and feelings, and builds up and upon 21st century literacies.

While it is clear that transmedia is a regular part of many children’s media ecologies—and, to a growing extent, their learning ecologies—this report is the first to document the characteristics of transmedia play and to consider its role in children’s education beginning in preschool. We hope that the research we present in T is for Transmedia will spark cross-sector, interdisciplinary conversations about the pedagogical promise of transmedia play and welcome your feedback on the report!

Connecting Disability with “Connected Learning”

Last month, the Digital Media and Learning Research Hub, made possible by grants from the MacArthur Foundation, published a research report on the findings of the Connected Learning Research Network, a group led by scholars such as Mimi Ito, Sonia Livingstone, S. Craig Watkins, and Katie Salen.  The Connected Learning Research Network, according to the report, is “an interdisciplinary collaboration among researchers, designers, and practitioners to advance an evidence-driven approach to learning, the design of learning environments, and educational reform that addresses contemporary problems of educational equity.”

The report summarized an international investigation into the ways that new media, embedded within a strong network of social relationships, can support young people’s interest-driven learning and direct that learning towards traditional educational, economic, and political opportunities.  The Connected Learning report provides a number of case studies on how learning communities develop, and how intergenerational partnerships and mentoring programs can be really powerful for young people who might otherwise have limited opportunities for participation and mentorship.  The authors use the term “non-dominant youth” in the report instead of minority youth, diverse youth, or youth of color, explaining that “non-dominant explicitly calls attention to issues of power and power relations than do traditional terms to describe members of differing cultural groups” (Ito et al., p. 7).

While synthesizing a wide range of research on educational reform, the report also creates a space for ongoing conversation about the best ways to provide all children with opportunities to pursue their passions, and to do so with the support of peers, parents, and other caring adults.  In the spirit of that provocation, I’d like to continue the discussion sparked by the Connected Learning report, and talk about an example of connected learning that builds upon the cases described in the report.  Specifically, this example of connected learning centers on young people with disabilities, a group that adds another dimension to the discussion of “non-dominant youth.”  This “group” though is loosely defined as a category as disability takes many forms and intersects with issues of economic, cultural, and institutional equity in complex ways.

Augmentative and alternative communication devices as “new media”

I came across this particular case of connected learning this past weekend when I attended the annual Assistive Technology Institute in Costa Mesa, CA.  The one-day conference convened parents, teachers, therapists, and people with disabilities to discuss and learn about the latest in assistive technology services, tools, and products.  “Our goal,” states the Institute’s website, “is to help enhance opportunities for learners from preschool to adult in order that they may compete and contribute in the twenty-first century.”  I attended the conference as part of my ongoing research on how contemporary families incorporate new media and communication technologies into their homes, and in particular, families with children with disabilities.

“Assistive technology” (or AT for those unfamiliar with the term) is legislatively defined by the 1994 US Individuals with Disability Education Act as “any item, piece of equipment or product system whether acquired commercially off the shelf, modified, or customized that is used to increase, maintain or improve functional capabilities of a child with a disability.”  At the conference, AT consultants Zebreda Dunham and Martin Sweeney offered up an alternative definition of AT, as “any thing or any tool that can make life easier and more productive for people with (or without) disabilities.”

One kind of AT is an augmentative and alternative communication (or AAC) device.  The American Speech-Language-Hearing Association defines AAC as “all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas.”  There are many different types of AAC and many types of AAC users.  Some AAC relies on the users’ body to communicate (for example, sign language), while other AAC requires the use of tools or technological equipment in addition to the users’ body.  These “aided” forms of AAC can range from “no-tech” items such as paper and pencil to “high-tech” mobile devices that produce voice output.  The price range then for AAC can be mere cents or tens of thousands of dollars.  Some high-tech AAC devices are essentially portable computers with the sole purpose of providing AAC, while other AAC devices have other functions too (for example, iPads loaded with AAC apps).

People who use AAC need it because they have severe speech or language problems, and this includes people across the lifespan.  Adults and children may use AAC due to a developmental disability (e.g. autism spectrum disorder, cerebral palsy), an injury or illness that impacts their communication (e.g. stroke), or a progressive neurological condition (e.g. multiple sclerosis).  People who use AAC need different ways besides or in addition to oral speech to express themselves.

One way that AAC use is supported is through AAC user groups, which are meetings for people who use high-tech AAC devices to use them among one another.  Research indicates that AAC users can often feel isolated from others who communicate in the same manner, and that this lack of opportunity contributes along with many other factors to inconsistent AAC use and less social, cultural, and civic participation.  AAC users, young and old, tend to know few other AAC users.  For example, a child might be the only AAC user in his or her entire school, which has implications for their sense of belonging.

Disability and diversifying “connected learning”

Getting back to the issue of connected learning, one of the panels that I sat in on at the conference was entitled “The Mentoring Program: Adult AAC Users Mentoring Child AAC Users.”  Kathleen Rausch M.S. CCC-SLP, a speech-language pathologist at the Assistive Technology Exchange Center at Goodwill Industries of Orange County, CA, and Kim Vuong, an AAC user and mentoring program participant, presented the results of a recent pilot program: an AAC group that brought together adults and children who use high-tech AAC devices.

Intergenerational AAC groups are novel; such groups typically consist of either adult or children only for a number of reasons including topics of conversation and levels of parental involvement.  The mentoring program presented paired adults and children who use the same AAC device to communicate.  This pairing is important since AAC devices and systems can vary greatly.

Rausch and Vuong reported that the program provided adults and children in the group with opportunities for increased social engagement.  While the young AAC users enhanced their communication capabilities, the older AAC users gained mentoring skills.  Rausch and Vuong’s work, like the Connected Learning research, was about digital media and adults mentoring children in the pursuit of a common interest.  Work with children with special needs is notably underdeveloped within the growing body of Digital Media and Learning Hub research.  In a recent article in the International Journal of Learning and Media, Peppler and Warschauer (2012) point out that little attention has been paid to how children with disabilities, too often poorly served by educational systems, are marginalized from research on interest-driven learning, out-of-school learning, and learning with digital media.

This gap in the research not only omits the work of practitioners like Rausch and Vuong from the conversation on digital media and learning, but may actually be to the detriment of those generally interested in studying connected learning.  For example, in their presentation Rausch and Vuong discussed takeaways that while specific to a particular form of mentorship under the specific conditions of the AAC users group are highly relevant and generalizable to connected learning as a model:

  • Perspective taking: The child and adult AAC users in the mentoring group, particularly those in wheelchairs, encountered differences in seat elevation that made one conversation partner unable to view the screen of the other person’s communication device.  It can be helpful for a conversation partner not only to hear the speech output coming from an AAC device, but also to see the visual symbols on the screen as well.  The interpersonal skill of “perspective taking” in this sense encompasses both the physical and the metaphorical.  In order for the adults and children in the AAC users group to engage in connected learning, they had to find common ground and learn how to share space in ways that are similar but also different from the examples of intergenerational perspective taking in the Connected Learning report.
  • Adults are learners, too: Even proficient adult AAC users in the group did not always know how best to initiate and sustain communication exchanges with child AAC users.  While children and their parents gained more confidence about AAC through the program, the adults gained experience in mentoring and enjoyed leading activities with the children.  More generally, adults engaged in connected learning might be experts in certain skills or knowledgeable in particular areas, but learning to give appropriate help and feedback is part of adults’ learning process as well.
  • Communities of practice:  The AAC users group provided children with unique opportunities to shape their identities.  The children had role models in and a shared purpose with the adult AAC users, role models that they can draw on to construct their sense of selves, both now and in the future.  It cannot be stressed how few the opportunities are for young AAC users to belong to such communities of expertise.


Young AAC users have complex communication needs, and thus need multiple points of entry and outreach to enter connected learning environments.  While advances in digital and mobile media have enabled a wider range of possibilities for meaningful communication among young people who use high-tech AAC device, these possibilities also exist among various institutional, educational, cultural, economic, and social constraints.  As the Connected Learning report notes, “Without a broader vision of social change […], new technologies will only serve to reinforce existing institutional goals and forms of social inequity” (Ito et al., p. 41).  As I’ve illustrated with my brief glimpse into the research presented at the Assistive Technology Institute on intergenerational AAC users groups, without a broader vision of connected learning itself, the current research agenda on new technologies will similarly isolate young people with disabilities from educational, economic, and political opportunities and prevent them from also competing and contributing in the twenty-first century and beyond.

Dunham, Zebreda, Martin Sweeney. Zen & the Art of No-Tech Assistive Technology. 2013. Presented at the Ninth Annual Assistive Technology Institute, Costa Mesa, CA.  http://www.zebredamakesitwork.com/trainings/

Ito, Mizuko, Kris Gutiérrez, Sonia Livingstone, Bill Penuel, Jean Rhodes, Katie Salen, Juliet Schor, Julian Sefton-Green, S. Craig Watkins. 2013. Connected Learning: An Agenda for Research and Design. Irvine, CA: Digital Media and Learning Research Hub.

Peppler, Kylie A., Mark Warschauer. Uncovering Literacies, Disrupting Stereotypes: Examining the (Dis)Abilities of a Child Learning to Computer Program and Read. 2012. International Journal of Learning and Media, 3(3): 15-41.