Meryl Alper is a graduate student at the Annenberg School for Communication and Journalism at the University of Southern California. While Meryl and I have never worked or studied together before, we have many things in common. Not only have we been to the same conferences and know all the same people doing research on children’s media and technology, but we also have both done stints working at Nickelodeon and Sesame Workshop. Coincidentally, both of us have simultaneously developed a new interest in technology for special needs children. Because Meryl is still in graduate school, she has taken on some really interesting research projects to investigate some of her ideas. I thought I should share her latest projects here, so I requested an interview.
Q: Your research at USC spans across a lot of different areas of media and technology with children. One of projects you are working on is about high-tech AAC and how devices are incorporated into the everyday lives of kids with disabilities. How did that project idea come about?
Meryl Alper: As an undergraduate at Northwestern, I was in the School of Communication, majoring in communication studies and history. What’s really special about the SoC is that it encompasses majors that often end up in separate schools (e.g. radio/TV/film, theater, dance) including one of the nation’s best communication sciences and disorders departments. So from the beginning of my research in children and media, which started in full my sophomore year, I’ve always thought of speech, language, and hearing sciences as being adjacent too, if not overlapping with, social science research into children living and learning with technology. At NU, I took advantage of the breadth of communication classes outside my major (taking some in film and a couple in children’s theater) but none in communication sciences at that point.
Before I arrived at studying high-tech AAC specifically, I spent about a year and a half thinking about children, disability, and technological change (e.g. in relation to blindness and visual impairment, prompted by New Media Literacies class taught by my adviser, Prof. Henry Jenkins). The iPad launched the spring before I started my Ph.D. program at USC in Fall 2010, and so ideas for research around tablet computers started simmering right before I got to school. I ended up presenting some research at the Digital Media and Learning Conference in 2011 on the influx of YouTube videos posted shortly after the iPad and the iPhone’s release, videos that parents had posted of very young children playing with these devices (and I was lucky to get a nice write up in Wired Magazine too).
My analysis was incomplete though because I didn’t really know how best to critically engage with the large amount of videos that parents of children with disabilities had posted to YouTube of their children playing with apps. They were more than just Apple fan videos or home movies; there was a testimonial quality to the videos, of parents talking about how in interacting with the iPad, their child was saying or doing things they didn’t know their child was capable of communicating. So I started following assistive technology specialists on Twitter, and took a class in assistive technology from USC’s occupational science and occupational therapy department (also, one of the country’s best). I attended the free Abilities Expo and got to have some hands-on exposure not just to the latest AAC devices, but also to local community organizations in southern California that were focused on supporting families with children with disabilities. I also organized a panel at the following year’s Digital Media and Learning conference, bringing together researchers, educators, and app developers focused on children with special needs. It was through the participants on that panel that I realized the incredible communicative capacity of AAC, the differences and tensions between dedicated and non-dedicated AAC devices, and the rapid development of AAC apps and apps designed for children with special needs that were gaining popularity in 2012 in a mainstream forum like iTunes.
Like yourself, Melissa, I’d also been interested all along in joint media engagement among families, and trying to imagine more diverse ways of conceptualizing families and media. There seemed to be research needed on how assistive technology and mainstream technology converged and diverged in children and families’ lives, so that’s where my current project came about.
Q: Can you tell us more about your methods for this research? Who are the subjects and how do you collect data?
MA: Due to Institutional Review Board rules, I can’t give specifics out about about my subjects, but I can give you a general picture. Since the fall, I’ve been shadowing a couple of speech-language pathologist/assistive technology specialists in their visits to about a dozen families’ homes for evaluations, trials, etc. with AAC devices. The children are ages 3-18, and have various developmental disabilities including but not limited to autism, cerebral palsy, and Down syndrome, and many have multiple disabilities. I’m doing participatory observation, which I find more valuable as a method than interviews for this project because I learn so much more from seeing people interacting with the AAC device than necessarily just talking about the device.
I’ve also been really lucky to have good conversation partners on this topic, despite not being in a special education or educational psychology department. I’ve been conducting this project as part of a year-long ethnographic methods seminar in the USC Sociology department. Being able to workshop ideas over time with such a talented group of scholars has really improved my qualitative research skills. This is definitely not the kind of research that a large-scale, random-digit-dial survey could get at! Also, it turns out that of my two younger sisters, one is currently getting her Masters in speech-language pathology, and the other is applying to grad schools for occupational therapy. Besides sister-y things to talk about with one another, it’s really lovely to have some professional overlap with them at this point in our lives.
Q: Wow, what a nice thing to have with your sisters! Do you think this is just a coincidence? Why do you think that you and your sisters have all gravitated to careers that involve helping special needs kids and adults?
MA: There’s probably a number of reasons why each of us were drawn to this field in some manner. Speech-language pathology and occupational therapy are only increasing in demand, and since my sisters graduated college post-financial crash, job security is certainly a factor. We were all pretty active in community service groups in high school that specifically partnered with people with disabilities (for example, coaching little league baseball in the Challenger Division.) But I suppose the ultimate commonality is our wonderful supportive parents, who raised us to be socially engaged, independent, and vocal.
Q: I know that your research is still in progress, but can you share any patterns that you see emerging in this research? What stands outvto you the most?
MA: Broadly, I’m starting to see that this project has relevance not just for research specifically on children, developmental disabilities and new media, but also on how people actively make new technologies meaningful in their lives and in their homes – part of what’s known as “domestication theory” research. Disability intersects with issues of race, gender, sexuality, ethnicity, language, and class in various ways among families using AAC. I’m also trying to be extra aware of how “home,” “household,” and “family” are not necessarily interchangeable. In terms of more specific patterns, I have a lot of field notes that I’m continually sifting and re-sifting through – hopefully a large part of a dissertation’s worth!
Q: So are you considering all forms of technology in this project? That is, are you taking into account computers, televisions, etc? Or are you just looking at AAC devices?
MA: AAC devices are my starting point, but I think it’s impossible to understand their purposes within families without looking at the entire home media ecology as well as families’ own levels of media literacy and technological literacy. I’ve heard stories from parents of children using AAC devices to Skype over the computer with grandma. I’ve seen children using their AAC device to request listening to music or using the computer, and that request being a way for parents and children to engage in media use together. Some parents are highly tuned in to online communities to connect with other families with children with disabilities, while other parents may rarely find themselves in front of a computer and seek information from other sources. Just as looking at any “technology” includes not just the tool but also the practices associated with that tool, I think that looking at AAC devices also encompasses looking at what mediated communication generally means to families.
Q: You also are interested in DIY tech and “hacking” practices of people with disabilities. What kinds of research questions do you have in mind in this area?
MA: I’m interested in contextualizing whatever contemporary research I do in how the hacking of “new” technologies by people with disabilities, particularly children, is an “old” practice. For example, blind youth were some of the earliest pre-computer hackers of the US telephone system, known as “phone phreakers.” As a teenager, Louis Braille appropriated a form of communication used by the French military to develop his own system. In light of this sort of cultural history, I think that there are interesting and critical ways in which youth with disabilities and special education should to be part of the discussion going on in educational research right now on how hacking, making, and maker culture can support learning, not just on STEM topics, but on political and social justice issues too.
Q: Can you give some examples of any good “new” technology hacks you’ve seen by special needs kids or adults?
MA: I attended a conference a couple of weeks ago that featured a presentation by a brilliant woman named Zebreda Dunham, who was born with Arthrogryposis Multiplex Congenita, which impacts her muscles and joints. She’s created a series of videos, entitled “Zebreda Makes It Work” that features the ways in which she works around, adapts, creates, and hacks the obstacles that she encounters in daily living. Her creativity with assistive technology really knows no bounds.