Meryl Alper, Assistant Professor of Communication Studies at Northeastern University, recently published Giving Voice: Mobile Communication, Disability and Inequality with MIT Press. Giving Voice critically explores the idea that technology “gives voice to the voiceless” through the lens of disability. It does so through a rich, qualitative study of how parents and assistive technology professionals understand technology use by children with complex communication needs. She focuses on how the iPad and a synthetic speech app called Proloquo2Go are taken up by children living with disabilities that include cerebral palsy and autism, and how contemporary families navigate the political, economic, and cultural terrain of the technology and the institutions tied to it.
We’re both interested in qualitative research that explores the value of technological access and the cultural scripts for ‘proper’ use, so I thought it would be good idea to dig into some of these issues with Meryl as a way of introducing more people to her excellent book.
Daniel Greene: So what motivated you to write a book about the everyday politics of speech, technology, and disability?
Meryl Alper: I was seeking answers to a personally long-unanswered question. Coming out of the School of Communication at Northwestern University for my undergraduate studies, I was perplexed by why the clinically-oriented Communication Sciences and Disorders department existed within the same school as the social science-inclined Communication Studies department (in addition to more humanities-leaning departments like Theatre and Radio/TV/Film). It’s something that I didn’t think much more about though until the first year of my Ph.D. program at USC Annenberg in 2010. At that time, I had started analyzing the emergence of the iPad as a cultural object through YouTube videos that upper- and middle-class parents had been posting of their young children using the tablet. I ended up with a sample of videos including ones that parents of children with disabilities had posted, and I was unsure how to proceed with the analysis. I felt that I didn’t know enough about disability, let alone technologies used by people with disabilities, to evaluate the claims being made therein about children, technology, and the relationship between them.
I started reading scholarship bridging disability, communication, and science and technology studies from folks like Gerard Goggin, Graham Pullin, Mara Mills, and Jonathan Sterne. I also ended up taking a graduate course on assistive technology in USC’s occupational therapy department. While I came for the ‘computer stuff,’ I stayed for the exposure to a wider array of topics that I might not have necessarily thought of as “technological” (like how to prevent pressure sores from wheelchair seating, and the latest in adaptive sports equipment). The class was also taught by a professor with a hearing impairment, and centered the lived experiences of people with disabilities.
I took this different way of thinking about technology, adaptation, and assistance, and applied it to my growing parallel interest in mobile communication. My exposure to the assistive technology subfield of augmentative and alternative communication (AAC) devices during the course allowed me to start drawing further critical connections between “communication sciences” and “communication studies.” AAC—which positions embodied oral speech as “communication,” and all else as augmentation or alternative—was a natural site to interrogate the interwoven politics and sociocultural dynamics of disability, media, and communication technology in everyday life.
DG: And could you tell us a little bit about how you conducted your research and some of the major themes that emerged from it?
MA: I began fieldwork in 2012 during a year-long qualitative methods course in USC’s sociology department, and continued field research through spring 2014. The book focuses on the time I spent with twenty kids ages 3-13 with developmental disabilities and their families in the greater Los Angeles area. It was a time in which the iPad became quite a lightning rod for local debates about the kinds of problems that technology could (or should) solve. I was interested in how special education fit into discussions around the value of technology in education more broadly. The kids I studied use the iPad and Proloquo2Go to turn words and icons they select on screen into synthetic speech for nearby conversation partners to hear. Some families could afford to buy both the hardware and software out of pocket, while others received it through their child’s school or from a charitable grant. From the outset, it was clear that even the process by which the technology was procured was putting kids on very different trajectories in terms of their control over the device and its role in their daily lives.
My fieldwork spanned several ethnographic practices: participant observations, semi-structured depth interviews, and informational interviews. After gaining permission from a local disability resource center under contract with California’s Department of Developmental Services, I observed families being trained at home by two speech-language pathologists named Rachel and Caren on how to use these technologies, interviewed parents, and conducted additional fieldwork such as attending parent workshops, sitting in on user groups for child AAC device users, and interviewing nearby school district staff and special education administrators about their protocols for administering assistive technology and speech therapy services.
Each chapter in the book poses a basic question about how participants interpreted one aspect of the iPad, including what made it “mobile” or “for communication.” My research addressed how children, parents, siblings, and extended families made sense of the new routines that the iPad and Proloquo2Go introduced into their lives, the meanings that they ascribed to these devices, and to the culture around them. Overall, what I found is that despite widespread claims that such technologies miraculously “give voice to the voiceless,” communication tools intended to universally empower are still subject to disempowering structural inequalities, especially for people with disabilities (whom society tends to position as natural beneficiaries of charitable able-bodied technologists).
How these kids and their families experienced connection and disconnection on a societal as well as interpersonal level couldn’t be reduced to the technology, or their disabilities, alone. My work offers a rather different account of relationships and technology use from those of cultural critics like Sherry Turkle, who argue that handheld mobile devices are single-handedly disabling people’s empathy and capacity for face-to-face communication. This binary between face-to-face and mediated communication is patently false and further complicated by individuals who primarily “talk” using mobile media and employ communication technologies that both augment and provide alternatives to their oral speech production. It’s not just that their voices need to be heard, but their varied perspectives on voice need to be accounted for as well.
DG: Much of the book is dedicated to deconstructing the idea that revolutionary technologies and technologists ‘give voice to the voiceless.’ The value of any assistive technology is of course contextual, and marginalized communities are unable to make use of these technologies in the same way as more privileged communities. Nevertheless, the trope persists. What accounts for the power of this technological vision, and who or what is responsible for keeping it in circulation?
MA: In the book, I break down “giving voice to the voiceless” as a powerful trope, in part by considering the separate meanings of “giving,” “voice,” and “the voiceless.” The notion of “the voiceless” suggests a static and clearly defined group. Discourses about “giving” them voice reinforce and naturalize “having” voice. This is done without questioning the complex dynamics between having and giving. “Giving voice” does not challenge the means and methods by which voice may have been obtained, taken, or even stolen in the first place.
We’re collectively responsible for keeping these tropes in circulation, particularly as social media platforms monetize and incentivize clicks and retweets of inspirational stories about the use of technology by people with disabilities. These kinds of news stories and media portrayals are derided among many in the disability community as “inspiration porn.” In economically, politically, and socially uncertain times, the certainty of technology of a fix and the certainty of disability as something in need of fixing, is, well, something to fixate on without having to interrogate the pernicious and widespread effects of ableism.
DG: But you’re not just concerned about popular representations of assistive technology and the ‘giving voice’ trope. Throughout the book there is a nuanced critique—sometimes explicit, sometimes implicit—of scholarship that uses disability metaphors for human-machine relations, erasing the very real violence people with disabilities face. I was reminded of Vivian Sobchack’s critique of prosthesis metaphors in her essay “A Leg to Stand On”, which draws on her experience with her own prosthetic leg. Instead of metaphors (where the prosthesis stands in for another, unconnected experience) or metonyms (where the prosthesis is figuratively separated from the disabled body it represents), Sobchack focuses on synecdoches: The intimate connections between her legs, her psyche, and her environment, and the new sorts of agency that emerge in the interplay between them. It seems like you’re doing a similar thing here, pushing us to realign figurative concerns about human-machine relations with very particular human bodies and very particular machines.
MA: Sobchack’s work is central to my thoughts about disability metaphors such as the “prosthesis,” as is Alison Kafer’s thoughtful critique of the “cyborg” as a depoliticized concept. Following their lead, I focus on the visible and invisible ways in which institutions and governmental bodies figure into humans, machines, and embodiment. I do not so much offer an alternative to “giving voice to the voiceless” as I call for “keeping voices attached to people.” I’m referring explicitly here to the work of Smithsonian historian Katherine Ott, who writes in Artificial Parts, Practical Lives: Modern Histories of Prosthetics, “Focus on the materiality of the body, not only or exclusively its abstract and metaphoric meanings. Keeping prostheses attached to people limits the kinds of claims and interpretive leaps a writer can make” (p. 4).
The detachment of voices from bodies is itself a form of violence. I keep thinking, for example, about how “voice” has been employed by Donald Trump in his campaign and the initial months of his presidency. In his acceptance speech at the Republican National Convention in July 2016, he proclaimed to all listening, “I am your voice.” The use of voice throughout his address was a direct appeal to white voters who perceive themselves as silenced, an explicit reference to the “Silent Majority” rhetoric popularized by President Nixon in 1969 to silence his progressive opposition and black activists.
As communication scholars such as Nick Couldry and John Durham Peters have noted, abuses of the term “voice” challenge the strength of democracies. This includes Trump’s use of VOICE as an acronym for Victims of Immigration Crime Engagement, a program introduced during his first address to Congress in March as a xenophobic fear-mongering tactic. Demagogues rise to power by insisting they are the larger-than-life embodiment of voice, stifling free speech, and scapegoating marginalized groups. We need to work harder than ever to keep voices attached to citizens in our democracy.
It should be noted that the primary way in which Trump has been the “voice” of people with disabilities is through mimicry, as when he ridiculed the words and mocked the physical mannerisms of award-winning New York Times reporter Serge Kovaleski in November 2015. Disabled individuals are talking back, be it on Twitter, or on stage at the Democratic National Convention. Three days after Trump’s RNC appearance, disability rights advocate Anastasia Somoza gave a speech at the DNC, during which she responded directly to his invocation of voice. Somoza pronounced, “Donald Trump doesn’t see me, he doesn’t hear me, and he definitely doesn’t speak for me.”
But beyond these iconic moments, we need to stay vigilant about protecting rights and improving disability policy, as well as the policies that acutely impact people with disabilities, such as education, healthcare, and internet access. Having a voice, and the role of technology in exploiting that voice, must be understood in relation to other forms of exploitation. People with disabilities are not passively given voices by the able-bodied; disabled individuals, rather, are actively taking and making them. Our media ecology and political environment is rapidly changing, and at stake is not only which voices get to speak, but who is thought to have a voice to speak with in the first place.
DG: I want to turn to questions of method. My own research about youth and digital surveillance mainly takes place at schools. This is pretty standard—so much of the scholarship about children in general, and children and technology in particular, focuses on their lives at school. The institution shapes the questions we ask and what we think we should know about kids’ lives. You took a different approach, interviewing parents of children with disabilities at home. Why was it important that this research move outside the school?
MA: As with school, home (and the family as an institution) shapes the questions that I ask and what I think I should know about kids’ lives. I was interested in how school was imagined and talked about at home, how families acted on these ideas and perceptions, and how artifacts did or did not move back and forth between home and school.
I think most people working in schools would be interested in seeing a glimpse of how students live their lives outside of the classroom, if only to provide more context and make their jobs easier. But getting paid for the time and labor in visiting with students and families outside of school is a different story. Going to individual homes, and doing so for multiple visits, is a laborious process involving a lot of travel time, but there isn’t a way out of it to answer my research questions. People sometimes need to be met where they are, both physically and psychologically.
There’s also somewhat of a practical reason for moving outside the school. Within the first few weeks of the semester of my qualitative methods course, we had to have a field site selected. School districts, especially very large ones in urban areas, often have their own institutional review board processes separate from the university. When those IRBs convene, it’s infrequent, sometimes quarterly. That wasn’t going to work with my timeline for entering the field.
DG: Chapter 3, about iPad cases, was far and away my favorite. What led you to spend so much time on what seems like a technological afterthought? Why do cases matter for you and for the families with whom you spoke?
MA: I found, quite unexpectedly, that mobile device cases mattered a great deal to my research participants as material and symbolic artifacts. In fact, it became difficult to fully understand what the iPad meant to participants without also asking them to share what they thought about tablet cases, as they evoked multilayered and sometimes conflicting meanings. These meanings mapped onto three dimensions: the political, technical, and sociocultural. I’ll focus on the first of these for brevity’s sake. Mobile cases could not be understood outside institutional politics, particularly the political economy of educational technology. For example, if a child broke a school-issued iPad while on school grounds, then the school or school district (depending on the funding source) was generally responsible for paying for a replacement. If the child broke the iPad or lost it outside school, it was unclear if the school district or parents would ultimately be held financially responsible.
Some parents felt like school districts took concerns about breakage too far, leading to a default characterization of their child as inherently reckless with technology, and this is one way in which cases mattered. One father I interviewed, Nelson, commented, “[The school district was] very hesitant giving us this device in particular because they thought [Stephanie, his daughter] was going to drop [the iPad], or she wouldn’t be able to hold on to it.” Nelson vehemently disagreed with the school district’s depiction of Stephanie. He and his wife ended up purchasing a separate iPad and iPad case on their own because the school district took three years to get her one. He said that “[Stephanie has] dropped it a couple of times, but as you can see, the way [the case is] designed (a Griffin Survivor), it’s really easy for her to take it, and walk around with it, and set it down.” A poorly protected iPad might lead to breakage, putting Stephanie in a vulnerable position to be deemed incompetent by the school district, giving it further leverage to deny her expensive services and violate her educational rights.
This example illustrates how cases have their own complex social meanings, both in relation to and independent from the devices themselves. One way in which these findings matter to me, as a communication scholar, pertains to the notion of technology as materially and symbolically durable. Bruno Latour memorably wrote that “technology is society made durable,” meaning that technologies reflect some fleeting moment of social stability in which they are initially constructed. Leah Lievrouw extends this formulation from the field of science and technology studies to communication studies, describing technology as communication made durable. The ways in which iPad cases are incorporated into families’ lives reflects these various conceptions of durability and the friction between them. The extent to which a communication technology is durable depends on the economic, political, and social infrastructures in which the technology is entrenched. This work on cases reminds us that we need to think “outside the box” to study mobile devices once they are removed from their initial physical cardboard boxes.
DG: I see a widespread tendency, among scholars and readers, to cordon off qualitative and quantitative descriptions of structural inequality: Qualitative research is supposed to tell us how inequality is lived, but quantitative work is there to tell us how inequality works. The priority for explanations and solutions is thus given to big-N stories mapping quantitative changes over time. But your research, much like recent work from ethnographers like Karen Ho, Carla Shedd, and Matthew Desmond, disrupts this binary, showing how inequality is reproduced in the daily lives of these families. For example, I was really struck by your description of working-class parents inspired by their child’s skilled use of media and technology but “exhausted by having to constantly convince experts that their non-speaking child could relate to others, feel and think” (p. 121). They struggled to make technological engagement institutionally legible, and their child’s future in those institutions depended on their success. Could you say a little more about what ‘inequality’ means in Giving Voice and how you see it being reproduced?
MA: While the singular “inequality” is in the title of the book, I think it’s more appropriate to speak of “inequalities” in the plural, particularly as this book forefronts intersectional analyses of inequality. What I mean by inequality, drawing at least initially on the work of Bourdieu, are distinctions between individuals and groups that are both subjective and objective, with “distinction” being the capital that certain differences generate. Inequality cannot be understood apart from “privilege,” or advantages that are only available to certain individuals and groups. The descriptive categories under which privilege and inequality operate are themselves fluid and in perpetual motion. The reproduction of inequality might not be through action, but also institutional inaction (like a school district refusing to deliver a free and appropriate public education to a child with a disability). One need not have earned the power that flows from privilege, or even be aware of it, to accumulate privilege over time and benefit from it.
Alison Pugh’s work on dignity was important for my research on inequality, distinction, and privilege as it relates to the inclusion of young people with disabilities and their families in the US. She describes dignity as the right not only to be but also to belong. She argues that children acquire and use knowledge about consumer culture through an “economy of dignity,” or a system of social meaning in which children actively navigate the terms of their belonging among peers through material goods and practices. While children and their family members have agency within this system, the subtle gradations of racialized class structure and inequality cannot be fully erased across all social contexts. Belonging is not absolute; it is contingent upon the processes by which indignities are perpetuated.
The processual contingency of inequality also held true in my study. For instance, mobile technologies did not guarantee upward mobility, not even a luxury good like the iPad. Such tablet devices used for assistive speech tended to be personally owned among more economically privileged families, and owned by school districts for those less economically privileged (with exception for those who obtained the device through a charitable grant). Because the technology ended up in the hands of children through various means, the cost of that access was differentiated when it came to control over what could and could not be done with the machine (like also watch YouTube videos or even sync the Proloquo2Go app to a Dropbox account). It’s important to focused on population-wide narratives, but big-N studies can also miss stories like these that identify patterns and explain processes.
DG: Empirically, you draw on interviews with parents and assistive technology professionals, as well as some participant observation at families’ homes and at events focused on disability and assistive technology, both for people with disabilities and technologists. This is where your political and ethical concerns around ‘giving voice’ become methodological concerns too. How do you go about incorporating the voices of children with complex communication needs into your study?
MA: Drawing on literature from the sociology of childhood, I wanted to trouble the idea of a pure child voice that is entirely separate and independent from adult intervention. For example, I observed meet-up groups for adolescents who use assistive speech devices to practice use of the technology in conversation with one another, but these meetings were facilitated by a speech-language pathologist and attended by parents. I also observed children expressing themselves in countless ways besides embodied oral speech. For example, I discuss in the book how the mother of an adolescent non-speaking autistic girl interpreted her mood by the music she played loudly from her bedroom. Is “voice” something that can only appear within quotation marks? What about a song sung by another person? Certainly, the research output of a printed book prioritizes direct quotes as evidence of voice.
I was especially captivated by anthropologist Joshua Reno’s notion of linguistic competency as inherently distributed through “linguistic equipment” (p. 407): platforms, relationships, and habits that enable mutual understanding. He draws attention to “boundary anxieties, about where speaking subjects end and begin” (p. 414). It is these “attempts to establish the distinctiveness of human beings [that lead] to fresh separations between them not only in terms of whether or not they can speak but also whether they have the wherewithal—and can face the risk—of ‘giving voice’ to others” (p. 415). In my study, was concerned with dependencies and independencies of voice, and ecological models of human development that position the child as both actor and acted upon in nested systems of social influence.
DG: Finally, could you tell us a little bit about what you’re up to now? What’s your next project and how does it build on Giving Voice?
MA: Your last question leads directly into my answer for this one, and how I might incorporate what I’ve learned about “voice” into a new project. I ended up with a bunch of material that never made it into my book (or dissertation, for that matter) on what else the kids in my study were doing with technology (besides the Proloquo2Go app), and specifically autistic kids, who composed the majority of my participants.
The next project is an ethnographic study of growing up autistic in the digital age. This including young people who are speaking, minimally speaking, and non-speaking (which inherently challenges any uniform understanding of “voice”). I’m focused across three “spectrums”—autism, media, and socioeconomic status—while also being critical of “spectrum” as the best metaphor for any of these categories. As with the earlier book, I’m less focused on formal learning environments like school or therapy settings and more focused on how informal learning takes place privately at home, on-the-go, and in mediated public spaces with “autism-friendly” offerings. This includes traditionally culturally “high-brow” spaces like libraries and museums, and more “low-brow” ones like movie theaters and arcades.
More broadly, as it relates to the field of communication studies, I want to better understand how the social is enacted, lived, made, and done within the sociotechnical. Anthropologists Elinor Ochs and Olga Solomon define “human sociality as consisting of a range of possibilities for social coordination with others that is influenced by the dynamics of both individuals and social groups” (p. 69). They position “autistic sociality” as one such possible coordination. This contrasts with the medical diagnostic criteria for autism in the DSM-V, which defines it as a condition manifesting in social impairments and deficits. For now, I’m breaking down fieldwork in three waves: autistic kids ages 3-8 (for whom family members are generally the most present social partners), ages 9-13 (when peers gain more prominence in their social spheres), and then revisiting members of my original 3-8 age cohort a few years later. From December 2016-May 2017, I’ve been working on the first wave in the form of home interviews and observations.
Methodologically, I’ve tried to standardize while being flexible. The interviews have been blended, in that they’ve taken place with parents and kids in different combinations (solo parent, parent/s with kids moving in and out of the interview space, and toggling between directly interviewing the kid and the parent/s in a visit). I’ve also done home observations, focused on being present for a media/technology activity that the kid likes to “do with” another family member/s. I’ve left “do with” open to participant interpretation, and because of this, “do with” has looked incredibly different across participants. At this moment, I’m thinking through methods for ethnographic work with the slightly older age group, particularly as they start to develop identities with varying degrees of independence and dependence from family and peers. It’s my hope that this work, at the very least, reminds us that nearly everyone craves companionship, but no one wants it in the exact same way.
Daniel Greene is a postdoctoral researcher with the Social Media Collective at Microsoft Research New England. He studies the organizations and technologies that teach us how, where, and why to work in the information economy. You can find his work in journals like New Media & Society, International Journal of Communication, Surveillance & Society or online at dmgreene.net.
Meryl Alper is an Assistant Professor of Communication Studies at Northeastern University, and a Faculty Associate with the Berkman Klein Center for Internet & Society at Harvard University. She is the author of Giving Voice: Mobile Communication, Disability, and Inequality (2017) and Digital Youth with Disabilities (2014), both published with The MIT Press.