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Home screen home: how parents of children with disabilities navigate family media use

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HOME SCREEN HOME:

HOW PARENTS OF CHILDREN WITH DISABILITIES
NAVIGATE FAMILY MEDIA USE

by

Meryl Alper

A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(COMMUNICATION)

August 2015

Copyright 2015 Meryl Alper

ii
DEDICATION
In memory of
My grandparents, Evelyn & Irving Alper and Beatrice & Martin Weitz.

iii
ACKNOWLEDGMENTS
Though my name alone appears on the cover of this dissertation, I have by no
means made it this far by myself. I have many people to thank for their support in seeing
this work to completion.
First and foremost, I am ever appreciative of my loving family. I have learned
how to care for others by being cared for so unconditionally and so completely by my
parents, Alyse and Andrew, and my sisters, Taryn and Devra. Their pride in me is one of
life’s greatest rewards. In fact, I’d like nothing more than to turn this dissertation into
another book if only so that Mom, my biggest cheerleader, can also have it added to my
hometown library’s collection, as she did with my first. Dad’s patience, kindness, and
wisdom have meant the world to me, from preschool to grad school. As I made my way
through dissertation research and writing, it was a real bonus to have a speech-language
therapist and a soon-to-be occupational therapist on call in Taryn and Devra respectively.
I look forward to our future sisterly collaborations.
Next, my gratitude for Henry Jenkins—my doctoral advisor, dissertation chair,
and personal Yoda—goes beyond words, except to say “the force is strong with this one.”
All that I accomplished over these past five years, and the pleasure I have taken in the
work, could not have been possible without him. Many thanks go to the other members
of my committee as well. This dissertation bears the indelible mark of Ellen Seiter,
whose critically engaged work on children, parents, and media deeply inspired my own,
and whose early interest in the project was incredibly motivating. I thank Mike Annany
for his encouragement and thoughtful feedback. I am also deeply indebted to disability

iv
and media scholar Beth Haller, who has offered nothing but unwavering support despite
being at another institution (and sometimes on the other side of the world).
I have been very lucky to learn from many others at USC. Paul Lichterman’s
Qualitative Research Methods course in the Sociology department jumpstarted this
project. He and my fellow classmates provided a safe space to workshop my writing and
refine my skills in participant observation and interview techniques. In the Occupational
Therapy department, Rachel Proffitt’s course on assistive technology exposed me to the
wide world of assistive technology and augmentative and alternative communication.
Across the university, Francois Bar, Margaret McLaughlin, Tara McPherson, and Mary
Lawlor provided key insights during the development of the dissertation project.
Thank you to the Annenberg Foundation for their generosity in supporting my
graduate education with an Annenberg Fellowship. The Annenberg School for
Communication also provided myriad forms of support. I am especially appreciative to
Amanda Ford, Anne Marie Campion, Christine Lloreda, Imre Meszaros, Billie Shotlow,
Larry Gross, G. Thomas Goodnight, Sarah Banet-Weiser, and Peter Monge. I would also
like to extend my gratitude to my fellow USC Annenbergers over the years, especially
Nikki Usher, Laurel Felt, Neta Kligler-Vilenchik, Andrew Schrock, Lana Swartz, Kevin
Driscoll, Alex Leavitt, Becca Johnson, and Kate Miltner.
Before I ever arrived at USC, I was inspired to pursue a Ph.D. by various female
mentors who had earned doctorates of their own: Jennifer Kotler and Rosemarie Truglio
of Sesame Workshop, and Christine Ricci and Alisha Crawley-Davis of Nickelodeon. I
have benefitted from the support of the Joan Ganz Cooney Center at Sesame Workshop,
including Michael Levine, Lori Takeuchi, Catherine Jhee, and Becky Herr-Stephenson.

v
Disability, media, and technology scholars Gerard Goggin, Mara Mills, Elizabeth
Ellcessor, Katie Ellis, Shuli Gilutz, Gillian Hayes, Sara Hendren, and Juan Pablo
Hourcade have provided important feedback and suggestions on my work over the years.
I have also found a home among scholars in the Children, Adolescents, and the Media
Division of the International Communication Association, most notably Alison Bryant,
Sandy Calvert, Lynn Schofield Clark, Maya Götz, Nancy Jennings, Amy Jordan, Vikki
Katz, David Kleeman, Dafna Lemish, Sonia Livingstone, and Ellen Wartella.
I am deeply fortunate to have the support of my dearest friends: Erika Brooks
Adickman, Dawn Amodeo, Darleen Chyu, Rebecca Eskreis, Eric Fingerman, Marnie
Kaplan, Jeanne Leitenberg, Jackie Len, Analise McNeill, Thuy-Van Nguyen, Steve
Pomerantz, Lisa Slopey, and Jennifer Vecchiarello. Over the course of my graduate
studies, I feel lucky to have built a support system among fellow doctoral students in
communication and related fields. Among them, I am particularly thankful to Morgan
Ames, Sabrina Connell, Stu Geiger, Katie Day Good, Kevin Gotkin, Caroline Jack, Laine
Nooney, Rebekah Pure, Rebecca Onion, and the participants of the 2014 Oxford Internet
Institute Summer Doctoral Program.
I am appreciative of those in the Los Angeles area who shared my recruitment
materials with other speech-language pathologists, educators, non-profit groups, and
parent listservs. Many thanks to the staff of the Evergreen Assistive Technology Hub
and the Rossmore Regional Center—especially Rachel and Caren, who gave so
generously of their time and energy, above and beyond their job descriptions. And
finally, my deepest gratitude goes to those who most directly made this dissertation
possible: the parents and children who opened up their homes, and their hearts, to me.

vi
TABLE OF CONTENTS
Dedication ii
Acknowledgments iii
List of Tables viii
List of Figures ix
Abstract x
Chapter One: Introduction 1
Broken Records 4
Cultural Capital 8
Reconsidering Assistive Technology 14
The Convergence of Mobile Media and AAC Devices 16
Home, Personal, and Family Computing 20
Digital Media, Disability, and Domestic Infrastructure 22
Parenting Youth with Disabilities 26
Digital Media and Disability Studies 29
Distinguishing Parents 31
Overview of Chapters 35
Conclusion 38

Chapter Two: Making a Case for iPad Cases: Meaning and Materiality in Mobile
Communication 42
Theorizing Mobile Accessories and Cases 44
How Cases Matter 46
“Case” Studies 55
Grasping the Encased, Unencased, and Re-encased 63
Conclusion 67

Chapter Three: The “Fun iPad” and the “Communication iPad”: (Mis-)Managing
Children’s Technology Use at Home and School 68
Demographics of iPad Ownership 70
Fun and Communication 73
Negotiating Fun and Communication On-the-Go 77
Entertainment and Education 80
Locking In Communication and Locking Out Fun 83
Learning to Speak the “Language” 91
Conclusion 94

vii
Chapter Four: Augmenting Communication with New Media and Popular
Culture 96
Communicating Deficiency 98
Deficit Model of Children and Popular Culture 100
Communicating Through Media Use 103
Towards an Asset Model of Disabled Children’s Media Use 116
Conclusion 119

Chapter Five: Talking iPads and the Partial Promise of Voice 120
Giving Voice to Synthetic Speech 122
A Partial Promise of Voice 125
Voice as Bodily 127
Voice as Performative 138
Voice as Political 145
A Partial Promise of Voice Output Communication Aids 151
Conclusion 153

Chapter Six: “You’ve Gotta Be Plugged In”: Distinctions in Parent Participation
within Disability Media Worlds 155
Rendering Parenting through Disability Media Worlds 159
Information Seeking 161
Participation in Online Communities 171
Information and Inspiration from Ordinary People in the Media 179
Dissociation with Famous Figures 186
Mass Media and the Social Language of Special Education 188
Conclusion 193

Chapter Seven: Conclusion 197
Similarities, Differences, and Intersectionality 199
Recognizing Privilege 202
The Limits of DIY Parenting 204
Future Research 207

Chapter Eight: Epilogue 210
“iPad is disabled” 210
Networked Im/mobility 212
Immobile Privatization and Socialization 215
Mobilities and (Im)mobilities 217
Disability and Immobility 218
Conclusion 219

References 221

Appendix A: Methods 254

viii
LIST OF TABLES

Table 1.1: Members of less and more privileged families 32

Table A.1: Descriptive data of child and parent participants 255

Table A.2: Demographics of child participants (in order of date of first
encounter with parent/s) 256

Table A.3: Parents and children observed and/or interviewed 261

Table A.4: Child clients of Rachel and Caren 262

Table A.5: Selected questions from parent interviews 265

Table A.6: Selected questions from assistive technology and AAC
professional interviews 266

ix
LIST OF FIGURES

Figure 8.1: Beatriz’ “disabled” iPad 211

x
ABSTRACT
The new media landscape for youth with communication disabilities is currently
undergoing a significant technological and cultural shift. Costly traditional electronic
speech aids (used most famously by physicist Stephen Hawking) are increasingly being
replaced with more affordable, accessible, and socially acceptable tablet computers such
as the Apple iPad and assistive speech apps. With these communication technologies,
youth and their families have the potential to develop voice and assert more control over
their lives. It is crucial, however, that we avoid using technological and social
determinism to explain the adoption and use of these tools. Over the course of 16
months, I observed and interviewed parents of 20 non-speaking children ages 3-13 in the
Los Angeles area who have developmental disabilities such as autism and who
communicate using the iPad and the most popular assistive speech app, Proloquo2Go.
Drawing on theories of cultural capital and structural inequality, I argue that parents’
ability to mobilize distinctive social, economic, and especially cultural resources shapes
their interactions with the clinical, educational, and media systems regulating these
technologies. I suggest ways in which various stakeholders—including policymakers,
practitioners, and engineers—can apply these findings so that more youth with
communication difficulties—not just those who are privileged—can speak and truly be
heard. Moving forward, supporting youth and adults with disabilities requires us to trace
the broader role of what I term “networked im/mobility” in how disability and other
dimensions of difference are experienced in the digital age.
1
CHAPTER ONE
INTRODUCTION
Popular visions of media and communication technology use by children with disabilities
are nearly always either utopian or dystopian. Over the twentieth and twenty-first
centuries, innovations such as radios, computers, and 3D printers have all been hailed as
nothing short of miraculous for disabled youth (Kirkpatrick, 2012).
1
Meanwhile, media
effects research (and attention-grabbing news reports of said research) also portrays
disabled children’s technology use as pathological; for example, by insinuating causal
links between video games, violence, and “problem behaviors” among autistic boys
(Mazurek & Engelhardt, 2013a, 2013b).
2

These narratives are more alike than they might seem at first glace. Through both
inspirational stories and cautionary tales, disabled youth serve as placeholders onto which
the majority able-bodied culture projects their hopes and anxieties, and not as citizens
with human agency. This focus on the extremes distracts us 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, importantly, it masks the ways in which
other dimensions of difference—such as class, race, ethnicity, gender, and nationality—
shape their daily engagement with technology.

1
Henceforth, I will use “children with disabilities” and “disabled children” interchangeably. I do this in
recognition that some individuals prefer the former and others the latter, and that this also varies by
disability. “Children with disabilities” is an example of “person-first” language for disability, while the
latter is an example of “identity-first” language. In any case, all people should have the right to decide how
they would like others to describe them.
2
While the American Psychiatric Association uses the term “autism spectrum disorder,” I avoid that term
due to its pejorative tone.

2
Researchers of children and media have long documented the ways in which the
promises and pitfalls of children’s media use are particularly bound up with family life
and social class (Clark, 2013; Jordan, 1992; Warren, 2005). Media culture caters to
middle and upper-income families, rendering invisible the experiences of less well-off
children and parents (Pugh, 2009; Seiter, 1995). While social class alone cannot fully
explain patterns in mediated family life, it can serve as a lens through which we
understand the strategies and ideologies that give shape to family media practices and the
meanings that parents associate with communication technology.
Social class also factors into the lives of families of youth with disabilities. Under
the specter of increasing income inequality in the U.S., policies impacting health
insurance, the minimum wage, and the costs of child care profoundly impact families of
children with disabilities. For example, Lin, Yu, and Harwood (2012) found that autistic
children and those with other developmental disabilities from immigrant families are
more than twice as likely as nonimmigrant families to lack consistent health care, and
three times as likely to lack any type of health coverage. Families of children with
disabilities reflect this country’s racial, ethnic, socioeconomic, cultural, and linguistic
diversity, and may have relatively little in common with one another.
How does class inform the everyday experiences that youth with disabilities and
their parents have with new media and communication technologies? This is the central
question driving the dissertation that follows. I focus specifically on the parents of
twenty young people: children who range between the ages of 3-13
3
and have a
developmental disability such as autism or cerebral palsy. Due to their disability, these

3
For an explanation of how I determined this age range, please see Appendix A: Methods.

3
children are also either unable to produce embodied oral speech
4
or have significant
difficulty in doing so. Each child uses a portable computerized voice output
communication aid in order to speak; they select words and phrases on a touchscreen that
the computer then says on their behalf through synthetic speech. The system that all of
these children use consists of an Apple iPad equipped with an app named Proloquo2Go,
produced by assistive technology company AssistiveWare.
5

Over the course of 16 months of fieldwork, I engaged in participant observation
with families in the Los Angeles area receiving home-based training from two therapists
(Rachel and Caren)
6
on how to use the iPad and Proloquo2Go, and conducted depth
interviews with these parents and others in Southern California. (For a discussion of the
study’s methodology, please see Appendix A: Methods). I examined how these parents
managed their child’s use of communication technologies—particularly the iPad—and
incorporated media into their family’s daily life. All of parents that I spoke with,
regardless of their circumstances, wanted the best for their child.
7
Many believed
wholeheartedly that new media could be powerful tools for their children to use in
developing voice and asserting more control over their lives.

4
It is common clinical practice to refer to these children as “non-verbal.” However, seeing as my study
illuminated the ways in which children who cannot or selectively speak develop a love of words and
reading through media and technology (see Chapter 4), I choose not to use this language. Instead, I draw
on the phrasing of feminist film theorist Lisa Cartwright (2008) in her book, Moral Spectatorship:
Technologies of Voice and Affect in Postwar Representations of the Child. In a discussion of disabled
individuals who communicate primarily by typing on a keyboard, Cartwright writes (p. 161), “Here we
have an obvious double mediation: the computer and the human hand mediate speech in the place of the
normative technology of speech, embodied oral voice.” Seeing as “voice” proved to be a particularly
problematic concept in the context of my study (see Chapter 5), I employ the term “embodied oral speech”
(i.e. children who have difficulty producing embodied oral speech) as opposed to non-verbal (i.e. children
who are non-verbal).
5
I would like to post a disclaimer here that dissertation does not attempt nor claim to clinically measure the
effectiveness of Proloquo2Go as an AAC app.
6
Please note the use of pseudonyms here and henceforth.
7
I understand that by virtue of agreeing to participate in my study, the parents with whom I spent time may
not be representative of all parents. Certainly, there are some parents who do not wish to be as involved in
their children’s schooling.

4
But against this shared background, distinctions among parents emerged in an
intersectional class analysis. To borrow the phrasing of Leah Lievrouw and Sonia
Livingstone (2006), the social meanings derived from and the social consequences of
these communication technologies varied among more and less privileged families
(distinctions which I will further explain at the end of this chapter). Parents’
understandings of the iPad and Proloquo2Go differed across class, with additional
considerations for issues of gender, race, and ethnicity among parents and children. Less
privileged parents associated meanings with the iPad, Proloquo2Go, and other new media
and communication technology in ways that were often out of sync with how they were
characterized by school districts and therapy providers. Whether advertently or
inadvertently, these institutions colluded with middle and upper-class parents of youth
with communication disabilities to preserve their privileged status.
Drawing on Pierre Bourdieu’s (1984, 1986) theorization of capital and its
application to education, parenting, and technology (Lareau, 2000, 2003; Ong-Dean,
2009; Seiter, 2008; Sterne, 2003a; Trainor, 2010), I argue in this dissertation that parents’
ability to mobilize social, economic, and particularly cultural capital shapes the extent to
which all youth with communication difficulties—not just those who are privileged—can
speak and truly be heard.

Broken Records
From the outset, it should be noted that social class, socioeconomic status, and
class positioning are not absolute or fixed. I encountered parents at one moment over the
course of their lives, all actively trying to maintain dignity in a world that was all too

5
quick to strip them of it. Simple additive models of disadvantage (e.g. being disabled and
working-class versus being disabled and upper-class) reduce individuals to passive
victims of structural inequality without a sense of agency (Hays, 1994). Parents of youth
with disabilities all have different encounters with structures of oppression. Detailed
below, Karun’s experience at opposite ends of the socioeconomic spectrum, and as an
immigrant to the U.S., puts into stark relief the powerful role of privilege and the
importance of an intersectional approach in understanding how parents of children with
disabilities support their children’s use of media and technology.
“Back home, I used to play piano with him. Now I don’t have piano,” Karun said
with a heavy heart. In the time and space between “back home” and “now,” a civil war
had escalated in Syria, endangering the lives of she, her husband Mihran, and their two
sons Pargev (13 years old) and Joseph (9 years old), as well as other Christian Armenians
living in the country.
8
Karun described a life of relative privilege in Syria prior to the
war. Both she and Mihran grew up attending private schools and learning English. He
had studied abroad in England and became a radiologist in Syria. “I had plenty of time
over there,” said Karun, describing life in Syria. “My housework was done by a nanny. I
could afford there, a nanny. She used to help in cooking and in cleaning the house.”
Karun also provided her children with various enrichment activities such as horseback
riding, swimming lessons, and the aforementioned piano.
“The war came very fast,” Karun explained. The family had to be mobile and
move quickly, whereas a piano is comparatively immobile and not easily transported.
Karun and her family sought asylum in California, where her extended family had settled

8
The cruel irony of this diaspora is that many current Christian Armenians in Syria are descendents of
those who fled to the country after escaping the Armenian Genocide in the Ottoman Empire during World
War I.

6
years earlier along with a large Armenian diasporic community (Herzig & Kurkchiyan,
2005). When I met Karun, both her and her husband were unemployed and the family
was living off of temporary support from the U.S. government. Not only did Karun not
have her piano, but “right now, I don’t have time,” she said. “That’s the bad thing here in
the United States. Life is stressful. […] It’s just run, run, run, run.” The abandoned
piano was a metaphor for the loss of a privileged life in Syria and the adoption of a new
lower-class identity in the U.S.
The piano, however, also symbolized another kind of longing. When Karun said,
“I used to play piano with him,” she referred specifically to Pargev, who is autistic and
has significant difficulty producing embodied oral speech. Karun thought that practicing
the piano would be a more worthwhile leisure activity than how Pargev currently spent
his free time at home. “Instead of playing with water or stimulatory behaviors, I want
him to do something functional,” said Karun. During each of the three hour-and-a-half-
long visits that I made to the family’s Los Angeles apartment, Pargev engaged in self-
stimulatory behavior (also known more colloquially as stimming). He seemed calm and
content to pour food and beverages, like chips and soda, back and forth into plastic bowls
and cups of uniform sizes, taking periodic bites and sips.
Besides the piano, many of the other resources that Karun accrued had to be left
behind in Syria too. She explained how a few years earlier, “I was saving some money
either to buy an iPad because they are like $1,000 or to remodel my rooftop to make it a
play area for Pargev.” While she had heard that non-speaking autistic children were
benefitting from the former, she chose the latter as a longer-term investment. During the
war though, the rooftop became unsafe. She recalled, “All the time there’s airplanes, the

7
military airplanes. And plus lots of people were killed by just a bullet, just a running
bullet, going through accidentally.” Karun ultimately regretted her decision, saying, “I
didn’t know it was going to be ruined and we’re going to leave and come here. I wish I’d
bought from those days, the iPad.”
After immigrating to California, Karun managed to acquire an iPad through a
charitable grant. She was “really hoping to find something useful for [Pargev] on the
iPad.” For example, in lieu of a physical piano, she downloaded “this little piano game”
onto the device. Pargev, however, was not interested. “I wish he loves games,” Karun
said wistfully. Unlike the dominant cultural figure of the mother who sees no value in
video gaming, Karun characterized the activity (as well as piano playing) as “something
functional,” a category to which stimming, according to her, did not belong. Along with
the iPad, the charity also provided Karun with a voucher to purchase Proloquo2Go.
“Right now, he can say three word sentences like, ‘Give me please.’ ‘Move please,’ ‘I
want juice.’ Only three words, not more than three words,” said Karun. She hoped that
the app would expand Pargev’s range of communication.
Karun wanted a better life for Pargev, but felt that she was receiving little support
from the U.S. special education system. Even though Karun had already purchased an
iPad and Proloquo2Go through the grant, Pargev’s school provided their own copy of the
hardware and software for him to use in the classroom under the supervision of teachers
and therapists. While the school allowed Pargev to take their iPad back and forth
between home and school, Karun had received little hands-on training on how best to use
the technology to communicate with Pargev at home. “For this Proloquo, honestly, he
needs professional with me. I can do it, I can help him to use it constantly,” she said, but

8
the sporadic at-home training sessions she received through California’s Department of
Developmental Services were “not enough.”
“This is something that disappointed me in United States,” said Karun. “They
told me, ‘Once you go to U.S., you’re going to be relieved and they take care of your
child,’ but it wasn’t like that.” In Syria, Karun had homeschooled Pargev.
9
“Over there,”
she said, “I’m in control. I can see what’s going on.” In the U.S., she had less power
over his learning, and felt that Pargev was regressing as a result. Said Karun, “Pargev
knew the alphabet when he was four and a half. I used to contact with the teacher and tell
her, ‘Please teach him to write.’ ‘It’s early,’ she told me, ‘it’s early. It’s early.’ Always
you get these answers.” Karun had left her piano behind and tried her best to recreate it
through a piano app on the iPad; instead, she wound up listening to a broken record.

Cultural Capital
In her essay, “Practicing at Home: Computers, Pianos, and Cultural Capital,”
Ellen Seiter (2008) draws an extended analogy between pianos and computers. Seiter’s
piece relates to Karun’s story not only because it involves those same technologies, but
also because it offers a relevant theoretical framework through which to understand the
role of social class in family media use. Seiter explains that baby grand pianos and
personal computers have each historically served as an “instrument of modern education”
(p. 47) in upper and middle-class U.S. homes. Privileged children tend to gain more
experience with these learning machines, and earlier in life, than do working-class
children. They learn specific “codes” at home that less well-off children do not

9
Clear distinctions between “home” and “school” are complicated by phenomena such as homeschooling
or “unschooling.”

9
(Bernstein, 1977). Educational institutions systematically reward students who can
demonstrate the kinds of technological proclivities and literacies that upper and middle-
class children are more likely to have acquired outside of school (Buckingham &
Scanlon, 2003; Livingstone, 2002; Seiter, 2005). The higher status that schools associate
with these seemingly “natural” competencies leads to the reproduction of social
inequality, or what Seiter (2008, p. 28) terms the “home technology divide.”
This divide persists not only due to household-level economic disparities, but also
parents’ unequal access to social and cultural resources that they gain through their own
education, careers, neighborhoods, friends, and extended family (Ito et al., 2013).
Bourdieu (1984, 1986) theorized that three main forms of capital—economic, social, and
culture—structure our social world. Having capital makes certain opportunities in life
more possible, or what we would refer to as class privilege. Economic capital is the way
in which many of us initially think about capital, as monetary value (though not money
itself). Social capital is the value of our human relationships and networks. Cultural
capital encompasses acquired modes and patterns of cultural consumption and
expression. Under certain conditions, social and cultural capital can be derived from
economic capital through systems of value exchange, but the two forms cannot be
entirely reduced solely to economics. Context matters, as evidenced in Karun’s case, for
capital is also sometimes lost in conversion and translation.
Bourdieu’s conceptualization of cultural capital includes three forms as well:
embodied, objectified, and institutionalized. Embodied cultural capital concerns learned
ways of using one’s mind and body: for example, the dialect or accent a person uses to
speak. Objectified cultural capital involves the display of items and goods denoting

10
status, such as a large collection of technological gadgets including the latest upgrades.
Lastly, institutionalized cultural capital has to do with markers of official recognition and
legitimation. This includes holding an advanced degree or set of credentials, and the use
of any specialized terminology that only a degree holder might use. Bourdieu applied the
theory of cultural capital to a range of “fields,” or domains of life such as religion and
law, but primarily focused on schools, arguing that that institution plays the most
significant role in reinforcing class relations.
Bourdieu’s theorization of cultural capital is grounded in French schooling, status
hierarchies, and signals of “high culture.” It does not completely apply to other cultural
contexts and systems of legitimation outside of France (Lamont & Lareau, 1988).
Returning to Karun, in Syria, she was a more privileged parent than most, intensely
involved in her child’s education. In the U.S., both Karun and her husband were
unemployed, and she was only as involved as she could be in Pargev and Joseph’s
learning considering her constraints. American schooling is deeply tied to middle-class
cultural values (such as independence and individual potential) and is designed to prepare
children to participate in middle-class life (Rogoff, 2003). In turn, educational reformers
since the mid-twentieth century have placed blame for declining schools on seemingly
“uninvolved” working-class parents. Cultural capital is widely used in the U.S. as
grounds for social exclusion (Lamont & Lareau, 1988).
Annette Lareau (2000, 2003) reoriented Bourdieu’s class culture perspective to
the American public education system, demonstrating how the class-based ideology at its
foundation impacts working-class and middle-class families differently. Lareau (2000)
draws a direct connection between class background and parental involvement in

11
schooling. She finds that social class shapes the cultural resources that parents have at
their disposal to influence their child’s formal education. Beyond just income, these
symbolic resources include a network of college-educated individuals and professional
work relationships. Middle-class families have an easier time activating these cultural
resources, which enables them to build stronger connections between family and school.
Challenging the misperceptions of uninvolved parents as unloving, Lareau finds that both
working and middle-class parents want their children to be happy and do well in school.
Lareau’s later work (2003) focused on variations in parenting styles. She
uncovered differing cultural logics towards childrearing between working and middle-
class U.S. families. These orientations are forms of what Bourdieu (1972) refers to as
“habitus,” or naturalized and internalized systems for structuring life. Middle-class
families follow a logic of “concerted cultivation,” in that they value extracurricular
activities and at-home learning experiences that nurture children’s talents and interests.
In addition to spending more energy meeting their children’s basic needs, working-class
families tend to orient their childrearing practices around opportunities for “natural
growth” such as unstructured play and time with neighbors. Public schools inherently
privilege middle-class approaches to parenting, and give middle-class children a “home
advantage” at school. Lareau makes visible structural inequality in U.S. public schools,
and the complex dynamic between home and school life.
Lareau’s work, however, centers primarily on mainstream classrooms. The U.S.
Department of Education reports that as of 2009, 13.1 percent (approximately 6.5
million) of children ages 3 to 21 in primary and secondary U.S. public schools were
receiving special education programs, including 2.9 percent with speech or language

12
impairments (approximately 1.4 million). Trainor (2010) and Ong-Dean (2009)
document how sociocultural factors influence power imbalances between parents of
students with disabilities and school personnel. Writes Trainor (p. 248), “Because
participation in special education requires specialized types of cultural and social capital
and occurs in a field with unique rules of engagement (i.e., habitus) meaningful
participation is challenging to establish.” Upper and middle-class parents have an easier
time speaking the very complex language of special education (Ong-Dean, 2009), which
includes knowing the latest therapies and how to talk in Individualized Education Plan
(IEP) meetings with their child’s teachers, therapists, and school administrators.
The years following Lareau’s research has also marked the growing presence of
the internet in children’s homes, and home as the primary site of disabled and non-
disabled children’s increasing time spent with new media (Horst, Herr-Stephenson, &
Robinson, 2010; Seiter, 2005). Parents borrow, purchase, and lease technology (e.g.
books, computers, internet access) as a type of capital “investment” (Bourdieu, 1987) in
their child’s learning, a down payment on future educational benefit (Facer, Furlong,
Furlong, & Sutherland, 2003). These decisions are not exclusively determined by class,
but are also influenced by parents’ cultural values, personal goals, and perceptions of
their child’s maturity in handling the responsibility of technology (Hoover, Clark, &
Alters, 2004; Clark, 2013; Katz, 2010, 2014).
Though Bourdieu (1986) did write about “technical capital” as a subset of cultural
capital (referring to the skilled individualized use of machinery by manual workers), he
did not discuss the networked and distributed skills needed to use information and
communication technologies to one’s advantage in contemporary society (Halford &

13
Savage, 2010). Concurrently, Jonathan Sterne (2003a) has highlighted the ways in which
technology can be a “strategic research site” (Bourdieu & Wacquant, 1992, p. 93) for
thinking about society and the organization of social practice. It is not only technology
but the culture around technology that can maintain pre-existing social differences and
reproduce social inequality (Kvasny, 2006).
In order to study how parents navigate their child’s iPad use, the technology must
be placed in the system of social relations that shape and reshape its intended uses and
cultural meanings. This project considers the iPads that children use as communication
aids (and as learning tools and fun toys) as one technology among a constellation of other
media that children and families use together (e.g. television sets, additional iPads). This
dissertation makes a contribution to theorizations of cultural capital by linking this
related, but often disparate, work on education, disability, technology, and the
reproduction of social and digital inequality. I focus on the role of embodied, objectified,
and institutionalized cultural capital in shaping how parents of children with disabilities
navigate their child’s use of media and technology at home, as well as the symbolic and
material ways in which this use is linked to school and other institutions like insurance
companies. In order to account for the experience of students with disabilities like
Pargev in the U.S. education system, I argue that the “home technology divide” (Seiter,
2008) must also be inclusive of assistive technologies and assistive uses of off-the-shelf
computers.

14
Reconsidering Assistive Technology
iPads subsume both pianos and computers, as well as technologies commonly
referred to as augmentative and alternative communication (or AAC) devices. Many
non-speaking or minimally speaking individuals use AAC devices to augment other
forms of communication they might already use (e.g. non-verbal gestures and sounds
such as laughter) and as an alternative to oral speech. It is difficult to get exact statistics
on AAC users, but the American Speech-Language-Hearing Association estimates that at
least 2 million Americans have an impairment—whether from birth, or acquired later in
life through an injury, illness, or progressive condition—that limits their ability to talk in
the traditional sense (ASHA, 2008). AAC covers a diverse range of practices (e.g.
American Sign Language) and various materials. These tools range from low-tech (such
as plastic communication boards) to mid-tech (such as electronics with disposable
batteries) to high-tech versions (e.g. the computer used by physicist Stephen Hawking)
that allow individuals to convert text into synthetic speech. High-tech AAC is often used
in combination with other forms of AAC (Beukelman & Mirenda, 2013).
AAC devices are traditionally categorized in the health and rehabilitation fields as
a type of “assistive technology,” which the U.S. Assistive Technology Act (2004) defines
as “any item, piece of equipment, or product system, whether acquired commercially,
modified, or customized, that is used to increase, maintain, or improve functional
capabilities of individuals with disabilities.” This definition encompasses a range of
tools, from complex systems for accessing a PC through eye-gaze input, to simple
devices such as a magnifying glass for reading fine print. The U.S. Individuals with
Disabilities Education Act (1997) requires school districts to provide assistive technology

15
to students with disabilities when it supports their acquisition of a free and appropriate
public education, which is how Pargev ended up with a second school-owned iPad with
Proloquo2Go.
Yet, the International Classification of Functioning, Disability, and Health states
“that any product or technology can be assistive” (WHO, 2002).
10
The sorting of
particular communication technologies into assistive and non-assistive is inherently
political. For example, while the use of Apple’s voice-activated interactive assistant Siri
by people with disabilities may be considered assistive (Newman, 2014), uses by able-
bodied individuals are often considered merely “time saving.” These demarcations
reflect particular values and ideas (Hendren, 2013; Mankoff, Hayes, & Kasnitz, 2010;
Pullin, 2011a). Due to human growth and degeneration over the lifespan, all people
fluctuate between independence from and dependence on other technologies (such as
canes) and human services (such as personal home care aides).
11

Distinctions between mainstream and assistive technologies have material and
symbolic consequences for people with disabilities. Assistive technologies have
historically been difficult for consumers to obtain and learn about because such
knowledge tends to belong to specialized professional groups (Scherer, 2005). Assistive
technologies are also largely associated with dependency and victimhood (i.e. the phrase
“confined to a wheelchair”), which can negatively impact the way in which people with

10
This raises the question as to whether or not assistive technologies are exclusively for individuals with
disabilities. Any artificial object (such as media) that mediates human subjectivity is a “prosthetic” to
McLuhan (1994), a “technology of the self” for Foucault (1988), or something that enables the emergence
of the human/machine “cyborg” with respect to Haraway (1991). With little exception though, these
theorists rarely interrogate the lived experiences of disability. Haraway (2007) has gone on to discuss the
notion of the cyborg in relation to disability, but not outside of the conditions of white and male privilege.
Instead, Ott (2002) charges scholars of technology and society to “[keep] prosthesis attached to people” (p.
5) and to avoid abstraction.
11
Some cultural anthropologists argue that all human communication is aided by assistive technology in
the form of other people and socially learned techniques (Moser, 2006a; Moser & Law, 2003; Reno, 2012).

16
disabilities see themselves and how others perceive them (Ott, 2002; Shinohara &
Wobbrock, 2011). The immediate environment in which technology use is embedded;
the cultural factors impacting technology adoption; and the dynamic qualities of both the
technology and the user all contribute to the social construction of assistive technology
(Ripat & Woodgate, 2011). With their exponential rise in ubiquity over the past two
decades, mobile communication devices are a significant “strategic research site” where
the meanings of mainstream and assistive technology are being constantly negotiated.

The Convergence of Mobile Media and AAC Devices
As a communication scholar, I was initially drawn to AAC devices because they
are inherently mobile communication technologies. High-tech AAC devices in particular
provide a unique lens for reflecting on the emerging complexities of mobile
communication. While these devices have traditionally cost thousands of dollars, less
expensive commercially available touchscreen tablet computers have unsettled the AAC
market (AAC-RERC, 2012; Hershberger, 2011; Higginbotham & Jacobs, 2011;
McNaughton & Light, 2013; Niemeijer, Donnellan, & Robledo, 2012; Sennott, 2011).
These tablets run Apple, Android, or Windows operating systems and are equipped with
apps like the popular Proloquo2Go that mimic the software on devices whose sole
function is AAC (also known as a “dedicated device”). There are pros and cons to both
non-dedicated and dedicated AAC devices. Dedicated devices offer richer and more
complex language software, but tablets are much lighter in weight. Companies that
produce dedicated devices such as Dynavox have robust customer service divisions, but

17
repairs to broken devices can take months; a broken iPad can be replaced with a quick
trip to the nearest Apple store (Rummel-Hudson, 2011).
Youth with communication disabilities and their families represent a growing
market for tablet-based AAC devices, and iPads in particular. A 2014 market survey
found that the Apple iPad was the number one brand among U.S. children ages 6-12,
topping all other consumer products (Spangler, 2014). Just between 2011 and 2013,
tablet computer ownership among families with children age 8 and under increased
dramatically from 8% to 40% (Rideout, 2013). While overall ownership of tablets is on
the rise among these families, there are substantial divides by income. Among upper-
income families (with a combined household income of $100,000 a year or more), two-
thirds (65%) own a tablet computer, while among families earning less than $25,000 a
year, ownership is only at 19% (Wartella, Rideout, Lauricella, & Connell, 2013). Among
individuals using an iPad or iPod for AAC, approximately 70% obtained the device
through a family purchase (McBride, 2011).
Apple has a storied relationship with parents of disabled youth (Petrick, 2015). In
the early 1980s, it was one of the first computer companies to have an internal group
dedicated to accessibility, the Office of Special Education and Rehabilitation. In 1986,
Apple partnered with the Disabled Children’s Computer Group, a Bay Area organization
comprised of well-resourced, tech-savvy parents of youth with disabilities advocating for
their children’s needs as computer users. Petrick (2015) notes that Apple had
paternalistic motives in forging this alliance. The company did not target individuals
with disabilities as potential users, but as beneficiaries of the company’s charity and
goodwill. Apple has taken a similar approach to its association with Proloquo2Go and

18
the parents of children who use the app. A recent Apple marketing campaign features a
Proloquo2Go user and testimonials from his family, claiming that Apple is “Making a
difference. One app at a time” (Apple, Inc., 2013). Through the partnership,
AssistiveWare receives major publicity and Apple gets to portray its brand in a positive
light.
12

The short film also conveniently omits the time and labor-intensive process by
which the parents of children with communication disabilities attempt to obtain iPads as
AAC devices, and the market-driven politics of schools’ selection of educational
technology (Apple & Christian-Smith, 1991; Cuban, 2001). School districts in the U.S.
are uneven in providing iPads for AAC (Fernandes, 2011). Traditionally, a child receives
an AAC device after licensed specialists conduct clinical assessments, manage device
trial periods, and write recommendations to schools and insurance agencies to fund an
AAC device. In the U.S., families usually play a significant role in this process (Angelo,
1997; Light & McNaughton, 2012), but there are significant barriers to participation.
This includes culturally and linguistically inaccessible parent training, biases in funding
processes, and technical difficulties in learning to operate the hardware and navigate the
software (Bailey et al., 2006; Marshall & Goldbart, 2008; McCord & Soto, 2004;
McNaughton et al., 2008; Soto, 2012).
In addition, Medicare, Medicaid, and private health insurance are resistant to
funding tablet-based AAC devices and do not consider them to be “durable medical
equipment” (Vance, 2009). Insurers fear the fragility of the iPad when used for constant
communication, liability risks, and the potential for fraud and resale (White & McCarty,

12
While Apple bills itself as representatives of creativity and freedom, the company also heavily constrains
what users can do with their hardware and software (Burgess, 2012).

19
2011). Besides apps for AAC, tablet-based devices also provide access to a wide range
of popular apps for social media, communication, and expression (e.g. YouTube,
Facebook, Twitter). A recent survey conducted by AssistiveWare indicated that 90% of
people using iPads and iPods for AAC also used the device for non-AAC purposes
(Niemeijer, Donnellan, & Robledo, 2012). And while the combination of the iPad and
Proloquo2Go is less expensive than a traditional high-tech AAC device, even just the app
alone is cost prohibitive for many families. At $220, it is one of the most expensive apps
in the App Store (almost as expensive as the iPad Mini) and there is no free trial version
as with many other apps. Besides an iPad, general out-of-pocket costs incurred by
families raising a child with disabilities are already quite substantial (Parisha et al., 2012).
The technological, economic, and cultural convergence (Jenkins, 2006a) of
mobile media with other media forms such as AAC devices creates opportunities for
some families and exacerbates challenges for others. In reference to the exciting
potential around iPads as assistive technologies, Mark, the father of 7-year-old River,
remarked, “I can’t remember the guy’s name, but one of the very first TED conferences,
he introduced the touch screen and it just seemed like it would be used for more than just
cash registers.” iPads are also “cash cows” for Apple. When privileged parents buy
iPads and Proloquo2Go out-of-pocket, they circumvent public funding. While it may
seem that tablet computers are causing a “disruption” in the AAC device market, the
trend is more likely a manifestation of neoliberalism, free-market forces, and
privatization. Considering the opportunities afforded by innovations in mobile
communication and yet significant structural limitations, this dissertation traces the extent

20
to which the iPad and Proloquo2Go are “making a difference” in families’ lives, and
what this difference looks like among families across the socioeconomic spectrum.

Home, Personal, and Family Computing
The iPad is only the latest personal computer over the past 35 years to be
marketed to families for use at home. While the terms “home computing,” “personal
computing,” and “family computing” are often used interchangeably, each has taken on
particular meanings at different moments in history (Ceruzzi, 2003; Friedman, 2005).
Homes can both contain computers and be composed of computers (Spigel, 2001a,
2001b). For example, today’s consumer electronics technology companies proclaim that
the “Internet of Things” will completely automate households in the coming years,
turning any home into a “smart home” by linking non-computerized appliances and
objects to smartphones and other connected devices (Wood, 2015). In the mid-1960s,
long before the “Internet of Things” became a thing, Westinghouse Electric engineer Jim
Sutherland built perhaps the first “wired home,” the Electronic Computer for Home
Operation (ECHO), using surplus computer materials from Westinghouse. It reportedly
“looked more like the home was built to house the computer instead of the other way
around” (Tomayko, 1994, p. 59).
The management of home computers and other domestic communication
technology has historically been unequally distributed among family members across
gender and age, and across families by class, race, and ethnicity (Giacquinta, Bauer, &
Levin, 1993; Gray, 1992; Rakow & Navarro, 1993). Those who are adult, male, white,
and professional have historically had the privilege of being able to take the technologies

21
that they worked with during the day back home at night, be it typewriters or computers
(Ceruzzi, 1996), as in the case of Sutherland. The leisure time to tinker with spare parts
for home improvement is inherently gendered, raced, and classed as well. Household
technologies and technologized households have historically created “more work for
mother” (Cowan, 1983) and for the women to whom household labor has long been
outsourced (i.e. nannies, housekeepers).
Like the home computer, “personal computing” also existed long before the first
“personal computer.” What makes a personal computer “personal” depends largely on
the social and cultural context of its use (Bardini & Horvath, 1995). For example, during
the 1970s, computer time-sharing at various institutions (e.g. school districts,
universities) allowed many people to use one computer at the same time (Campbell-Kelly
& Aspray, 1996); yet students and educators who used these systems had individual
experiences and developed personal practices (Rankin, 2014). By 1977, advancements in
microprocessing and the development of lower cost minicomputers such as the Altair
8800 had laid the groundwork for the success of the Apple II, the first “home/personal
computer” (according to Apple’s official description). The Apple II was marketed to
households as a domestic “appliance” that one could simply plug in and use like a toaster
(Ceruzzi, 1996); now, high-tech toasters are marketed like computer gadgetry.
Conceptions of “family computing” have shifted as well. One of video gaming
company Nintendo’s earliest consoles in Japan in the early 1980s was actually called the
“Family Computer” (or Famicom), which was the precursor to the Nintendo
Entertainment System later sold in North America. Advertisements projected more
sophisticated uses for the family computer that did not yet exist, particularly

22
opportunities for children’s learning at home. Long before the iTunes App Store,
children’s software firms proliferated during this era, eager to profit from the creation of
a family market for “edutainment,” a portmanteau for education and entertainment
software genres (Ito, 2009). On a fundamental level, the term “family” means various
things depending on the social, cultural, political, and historical context (Coontz, 1992).
Nuclear families have long been the primary target of personal computer advertising
(Haddon, 1988; Lally, 2002; Selwyn, 2003), which in turn relies heavily on normative
images of gender and family life (Cassidy, 2001; McPherson, 1996; Reed, 2000).
Personal networked mobile devices play an increasingly central role in family
computing (Clark, 2013; Ling & Bertel, 2013). The growth of domestic mobile
technologies in the 1960s (such as portable telephones and televisions) reflected a
transformation from what Raymond Williams (1975) termed “mobile privatization” to
what Lynn Spigel (2001b) calls “privatized mobility.” While postwar
telecommunications promised suburban homes connections to the outside world, portable
devices marketed to families in the 1960s shifted domestic technologies into the public
realm. The histories of home computing, family computing, and personal computing in
the U.S. are bound up with, though not analogous to, one another. Together, they set the
scene for the emergence of the Apple iPad in 2010 and its role in the lives of families.

Digital Media, Disability, and Domestic Infrastructure
A number of children’s media researchers have emphasized the importance of
studying children’s technology use in relation to multiple social contexts (Jordan, 2004).
Developmental psychologist Urie Bronfenbrenner’s (1979, 1986, 2005) ecological

23
systems theory of human development proposes that children are involved in a variety of
social settings and institutions that have direct or indirect impact on their lives.
Contemporary applications of Bronfenbrenner’s theory address the myriad ways in which
children’s interconnected environments influence, and are influenced by, children and
parents’ engagement with media (Takeuchi & Levine, 2014). There has been an
increased focus among digital media and learning scholars on the connections and
disconnections across children’s “learning ecologies” (Barron, 2006), or systems which
encompasses formal settings like the classroom and informal learning settings like
homes, libraries, and afterschool programs (Ito et al., 2013). These linkages may be
material (e.g. email communication between teachers and parents) or symbolic in nature
(e.g. teachers’ perceptions of the educational value of children’s out-of-school activities).
Media both shape communication patterns and are integrated into existing
patterns of daily family life (Hoover, Clark, & Alters, 2004; Horst, Herr-Stephenson, &
Robinson, 2010; Lull, 1990; Morley, 1988, 2000; Spigel, 1992), a process referred to as
domestication (Berker, Hartmann, Punie, & Ward, 2006; Haddon, 2007, 2011; Lie &
Sørensen, 1996; Silverstone & Hirsch, 1992). This dialectic is reflected in the title of this
dissertation, Home Screen Home—a portmanteau that captures the dynamic between the
“home screen” and “home sweet home.” Contemporary families spend a significant
amount of time in and outside of their place of residence with the “home screen,” or the
initial interface displayed at the launch of a mobile device or computer program that is
returned to in order to access particular functions. Families are also implicated in the
notion of “home sweet home,” a nostalgic expression that conveys comfort and relief
upon re-entering one’s place of residence. This dissertation in part traces how these dual

24
conceptions of the domestic infrastructure and the domestic imaginary shape one another
and how families navigate this interplay across public and private spheres.
Digital, mobile, convergent, and networked media are increasingly an integral
part of families’ everyday lives in Western society (Ribak, 2007), a force of both stability
and instability. In the sociology of technology, “infrastructure” loosely represents
embedded and pervasive conventions, standards, and structures (Lievrouw &
Livingstone, 2006; Star & Bowker, 2006). Livingstone (2002) refers to the modern home
using the language of infrastructure, specifically as “domestic infrastructure.” Media and
technology are key components of this infrastructure, writes Livingstone (p. 670,
“defining the home, in spatial terms, and daily life, in temporal ones.” As infrastructure,
household routines and habits generally becomes fixed and taken for granted; they are
nearly invisible until a break or fracture occurs (Star & Bowker, 2006). Domestic
infrastructures also co-constitute other sorts of infrastructures, such as community
infrastructures (Katz, 2010).
Outside of the classroom and therapy settings, there has been very little research
on the everyday experiences that disabled youth have with media and technology in the
context of the home and other spaces in which families spend time together (Dawe, 2006;
Alper, 2014). Existing literature, drawing on resiliency theory (Patterson, 2002), suggest
that media play a role in how families of youth with disabilities structure domestic life.
Resiliency theory puts forward the idea that families of children with disabilities develop
accommodations, or “proactive efforts of a family to adapt, exploit, counterbalance, and
react to the many competing and sometimes contradictory forces in their lives”
(Bernheimer, Gallimore, & Weisner, 1990, p. 223). One type of accommodation that

25
families make is altering their media and technology use (Maul & Singer, 2009; Nally,
Houton, & Ralph, 2000; Shane & Albert 2008). Some accommodate for behavior
difficulties on car rides by providing backseat DVD players. Others make changes in
their home television viewing habits, including having separate screens for different
family members, watching child-oriented programming together, or not viewing
television at all (Keilty & Galvin, 2006).
Domestic infrastructure can be understood in part through families’ temporal
rhythms, per Livingstone’s definition. Sociologists have illustrated that not all families
think of time in the same ways (Lareau, 2000; Nippert-Eng, 1996). Parents have
different beliefs about the management and value of time, also known as a family’s
“temporal orientation” (Jordan, 1992). Beyond that which can be quantified (e.g. hours,
weeks), families experience the passage of time in other ways, such as through patterns
(Hochschild 1989, 1997). Among families of youth with disabilities, it is important to
recognize the regularity as well as irregularity in these patterns. Various disability
scholars discuss the notion of “crip time” as a more flexible alternative to normative time
frames (Gill, 1995; Zola, 1993). Disability can influence people’s relationships with
time, for individuals with disabilities and anyone who spends time with them. Crip time
provokes the examination of norms and expectations about the pace, scheduling, and
duration of human activities (Kafer, 2013), including that of household routines.
Families tend to adjust the timing of their daily lives to accommodate the needs of
their child with a disability (Maul & Singer, 2009). For example, travel time can take
longer when a person with a physical disability encounters a mode of transportation that
is difficult to access. Conversations may happen at a different rate with someone who

26
uses an augmentative and alternative communication device. “Family mealtime” may
happen more or less frequently depending on any feeding difficulties that a child with
cerebral palsy might have. Due to sensory, hormonal, and neurological issues, some
children have difficulty sleeping; children who cannot fall back asleep may turn to media
for comfort. Media can also help structure individual routines. Some autistic children,
for instance, find low-cost visual schedule software and apps for mobile devices helpful
for self-regulation (Hayes et al., 2010). A conception of domestic infrastructure that
accounts for all families, including those of youth with disabilities, must incorporate
these considerations.

Parenting Digital Youth with Disabilities
Families of children with disabilities represent a small but growing market within
the children’s media industry (Canedy, 1997). The products directed at parents of
children with disabilities (particularly white, middle-class mothers) are marketed as
having educational, entertainment, and therapeutic value. Consider a few recent
examples: the Toys“R”Us Toy Guide for Differently-Abled Kids
13
; the Common Sense
Media advice brochure Power Up! Apps for Kids with Special Needs and Learning
Differences
14
; and “autism-friendly” or “sensory-friendly” musical performances on
Broadway
15
and movies offered by AMC Theaters
16
. These organizations and companies
present parents of children with disabilities with an array of media and technology
choices not traditionally offered by children’s commercial culture.

13
http://www.toysrus.com/shop/index.jsp?categoryId=3261680.
14
https://www.commonsensemedia.org/guide/special-needs.
15
https://www.tdf.org/nyc/40/Autism-Theatre-Initiative
16
https://www.amctheatres.com/programs/sensory-friendly-films

27
Commercialization plays a significant role in Western parenting and childhood
(Martens, Southerton, & Scott, 2004; Seiter, 1995), “[redefining] care and belonging as
mediated through the market” (Pugh, 2009, p. 25). The growth of the “special needs
parenting”
17
market must also be understood in relation to the complex ways in which
ideal roles for mothers of children with disabilities are constructed (Landsman, 2009).
Recently, feminist disability studies scholarship has invited reexamination of the meaning
of motherhood (Adams, 2013), and the ways in which media narratives reflect and shape
the lives of families with children with disabilities (Langan, 2011, Ryan & Runswick-
Cole, 2008; Sousa, 2011). Late twentieth and early twenty-first century discussions
about consumer goods and children with disabilities, particularly those on the autism
spectrum, are inexorably linked to gendered discourses about parenting (Jack, 2014).
One infamous example is the “refrigerator mother theory,” the largely discredited
yet persistent Freudian-inspired theory developed by Leo Kanner (1949) and popularized
by Bruno Bettelheim (1967). The theory posits a direct causal link between mothers’
lack of warmth and their child’s autism. In his now classic case study published in
Scientific American (1959), Bettelheim’s “Joey: A ‘Mechanical Boy’” painted a scathing
journalistic portrait of Joey’s supposedly distant mother accompanied with self-portraits
made by Joey that depict his body entirely made of and surrounded by electrical
machinery. Bettelheim declares (with no empirical evidence) a causal link between the
influx of domestic technologies in the postwar U.S. home and societal devaluing of
mother-child relationships. He extends this assertion to allege that thus “cold” mothering
is a cause of childhood autism.

17
I avoid the term “special needs” to refer to disability, as many individuals with disabilities find the term
patronizing.

28
While Kanner and Bettelheim’s claims are widely considered suspect today
(Pollack, 1997), U.S. mothers in the twenty-first century are blamed in other ways for
their child’s disability. For example, mothers of autistic children are admonished for
having vaccinated their child, not being vigilant enough in noticing early signs of their
child’s autism, and insufficiently seeking out and administering the latest therapies and
treatments for their child (Gross, 2009). The U.S. is in the midst of a cultural shift away
from the “refrigerator mother” archetype towards an “intensive mothering” (Hays, 1996)
paradigm of parenting youth with disabilities. Writes Sousa (2011, p. 221), “Whereas
seemingly cold mothers and overbearing caregivers were once considered responsible for
causing their children’s intellectual disabilities, warrior-hero mothers are now responsible
for curing the disability, or at least accessing the intervention that will mitigate the
disability’s impact on their children.”
Both the “refrigerator mother” and “warrior-hero mother” scenarios, however,
define disability as something to be eradicated. For many families, disability can be a
source of pride and a positive aspect of their and their child’s identity. While research
shows that parenting a child with a disability can place significant negative stressors on
family well-being (Darling, 1987), parenting children with disabilities can also have
positive psychosocial consequences for families (Green, 2007). Notions of childhood
and child rearing change over the course of U.S. history in relation to shifting social,
cultural, political, and economic contexts (Jenkins, 1998). What U.S. society considers a
“good” or “bad” parent to a child with a disability must be understood in terms of general
parenting trends, shifting understandings of children’s consumer culture, and particular
policies and historical conditions surrounding disability and families.

29
Digital Media and Disability Studies
The intersectional approach to parenting, media, and technology taken in this
dissertation bears the influence of critical disability studies (Kafer, 2013; McRuer, 2006;
Siebers, 2008), as well as work from media, communication, and science and technology
studies that incorporate these perspectives (Bakardjieva & Smith, 2001; Ellcessor, 2012;
Goggin & Newell, 2003; Sterne, 2003b; Mills, 2011; Moser, 2006a). Disability studies
scholarship in the U.S. originates in civil rights activism of the late twentieth century
(Shapiro, 1993), following in the tradition of critical race, gender, and sexuality studies
while building upon this work as well. Much disability studies scholarship is critical of
the “medical model” of disability, which is grounded in the assumption that disability is
necessarily an individual issue or a biological burden or deficit (Davis, 2002; Linton,
1998). In response to the medical model, some disability activists and scholars
emphasize a “social model” of disability, which locates disability not in the individual but
in culture and society (Oliver, 1990; Shakespeare, 2013). The social model makes
distinctions between impairment (bodily difference) and disability (the social and built
environment that disables different bodies).
More recently, scholars drawing on feminist and post-structuralist theory critique
the social model for essentializing impairment and disability (Sobchack, 2004), akin to a
false sex/gender binary (Butler, 1990).
18
Garland Thomson (1996) notes that all bodies,
depending on the environment, situation, and interaction, have “varying degrees of
disability or able-bodiedness, or extra-ordinariness” (p. 7). Kafer (2013) complicates this
universal view, writing that “disability is more fundamental, more inevitable, for some

18
Butler has also drawn past critique from disability scholars for not addressing disability in discussions of
bodily difference (Samuels, 2002).

30
than others: the work that one does and the places one lives have a huge impact on
whether one becomes disabled sooner or later, as do one’s race and class position” (p.
26). Drawing on queer and feminist theory, Kafer instead offers a “political/relational
model of disability,” in which disability is a set of political practices and social
associations—“a site of questions rather than firm definitions” (p. 11). Feminist
disability theory emphasizes that disability is experienced in and through relationships, is
bound up with the lives of people with and without disabilities, and that fighting back
against discrimination requires coalition building.
In the digital age, a range of technological, cultural, political, and economic
barriers limit the agency of individuals with disabilities (Dobransky & Hargittai, 2006;
Warschauer, 2003). Inaccessible platforms, applications, and websites (e.g. poor closed
captioning in online video) strongly discourage individuals with disabilities from cultural
as well as societal participation (Ellcessor, 2010, 2012; Ellis & Kent, 2010). Solutions
that focus first and foremost on issues of basic access are rooted in a societal belief in
technological fixes and a dominant view of individuals with disabilities as most in need
of fixing (Goggin & Newell, 2003). This discourse attributes individual impairment with
being the primary source of individuals with disabilities’ exclusion from American
society. In a technologically determinist version of this narrative, technology alone
enables disabled individuals to overcome the barrier of disability and serve as an
inspiration for non-disabled people; in a socially determinist form, visionary
technologists liberate individuals with disabilities from the constraints of their minds and
bodies.

31
Dismantling these determinist views of the relationship between technology and
disability requires examining up close the range of mediated encounters had by disabled
individuals across the socioeconomic spectrum, including youth with disabilities and
their families.
19
Empirical research on the social and cultural “participation gap”
(Jenkins, 2006b) with respect to youth with disabilities has been quite limited (see
Peppler & Warschauer, 2012; Söderström, 2009). In relation to the small but growing
literature on how class, gender, sexuality, and race shape new media use among young
people (e.g. Livingstone & Helsper, 2007; Everett, 2008; Gray, 2009), Goggin writes
(2013, p. 86), “there has been even less work on disability, youth, and mobiles, with the
research literature focusing still on issues of accessible design, or hamstrung by
outmoded accounts of impairment and disability.” This dissertation takes up Goggin’s
call, identifying intersecting issues of privilege and oppression that affect the lives of
youth with communication disabilities and their families.

Distinguishing Parents
Does class matter in how parents of children with disabilities understand the role
of media and technology in their child’s life? Though not pertaining to family media use
specifically, Landsman (2000) found no difference by class in how mothers of children
with disabilities understood their motherhood and their disabled children. She found that
mothers instead considered themselves to be “in a class by themselves” (Landsman, p.
184) compared to mothers of non-disabled children due to their distinct experiences.
Landsman (p. 185) suggests that, “discrimination against persons with disabilities extends

19
This reflects Raymond Williams’ (1975) call to reject both “technological determinism” and “determined
technology.”

32
broadly across class lines in U.S. culture.” Based on my research, I take issue with that
claim; while discrimination against disabled individuals is pervasive, it is not dispersed
equally.
I found clear distinctions between what I will refer to as more and less privileged
parents, their privilege being relative to one another within the context of the greater Los
Angeles area. Of the twenty families that I studied, ten were more privileged and ten
were less privileged. Table 1.1 provides a list of the names of children and parents
observed or interviewed in each group. This is not to say that these two groups are
clearly distinct; over the years, some parents, like Karun, experienced fluctuations in their
economic stability due to factors such as divorce or illness. For example, Nelson
explained that before the 2008 economic recession, “I used to make more money.” With
his wife’s cancer and his daughter’s autism diagnosis though, the job could not
accommodate his family’s needs. Nelson found a job that, while paying less, allowed for
more flexible hours. “I’m only here,” he said, “because this job gives me the freedom to
be with my family whenever I have to be.”

Table 1.1. Members of less and more privileged families
Less privileged families (N = 10) More privileged families (N = 10)
Child Parent/s Child Parent/s
Paul Michael Garine and Levon Nash Taylor and Todd
Beatriz Pilar and David Thomas Daisy
James Cathy Raul Nina
Madeline Teresa Luke Debra and Rob
Stephanie Marisa and Nelson Danny Alice and Peter
Pargev Karun Isaac Sara
Talen Kameelah Eric Anne
Kevin Rebecca Chike Esosa
River Mark Cory Perri
Moira Vanessa Sam Donna

33
In some ways, the distinctions between these two groups fit with traits that we
usually associate with class privilege in the U.S., but there are also some additional
considerations. In more privileged families, mothers tended to be college educated, while
mothers in less privileged families more often had at most completed high school or
taken some college classes. One requirement for participation in my study was that at
least one parent needed to be fluent in English; as a result, both more and less privileged
parents tended to be fluent in English. There were more parents, however, for whom
English was their second language and/or spouses who were not fluent in English among
less privileged families.
Parents were recruited for the study from the greater Los Angeles area, which I
bounded as Los Angeles, Orange, and Ventura Counties. The five-year (2009-2013)
estimate of median household incomes for each county are: $55,909 (Los Angeles
County), $75,422 (Orange County), and $76,544 (Ventura County) (U.S. Census Bureau,
2014). More privileged families tended to have a combined yearly household income of
$100,000 or more, whereas less privileged families generally indicated earning $50,000
per year or less—below the median in all three Los Angeles area counties.
Greater numbers of more privileged families (6 out of 10) owned the iPad that
their child used with Proloquo2Go than did less privileged families (2 out of 10). Of
those two families, one had saved up money to buy the least expensive iPad Mini out-of-
pocket for their child (River), and the other had received a grant in order to buy the iPad
and Proloquo2Go (Pargev). As more privileged parents had more discretionary income,
they tended to have other Apple devices (e.g. iPods, iPhones) at home onto which

34
Proloquo2Go could be installed as a backup. Said Esosa of her 7-year-old son, Chike, “A
couple of times, he’s taken my phone, the Proloquo on my phone is the factory setting.”
More privileged parents also tended to view iPads as easily replaceable should the
technology break. For example, said Peter, father of 6-year-old Danny, “quite frankly, if
Danny destroys this tomorrow, I can go buy an iPad 2 for 400 bucks that runs.” Rob and
Debra mentioned how a few months ago, their house had been broken into and someone
stole the iPad that their 13-year-old son Luke was using on loan from school. Rob said
that “I suppose, technically, [the school] would have to supply it,” but he instead he went
out and immediately bought another iPad. “There was no way I was going to wait for
[the school],” said Rob. “I had to quick order one, get it down here, and get it, that kind
of thing.”
In contrast, less privileged parents were more often fearful of something
happening to the iPad, and being liable for replacing or repairing the broken technology
out of their own pocket, per their loan agreement with schools and regional centers. One
assistive technology specialist in a predominantly low-income and Latino neighborhood
in Los Angeles mentioned that the parents they worked with tended to be hesitant to
bring home the iPad that their child used to communicate in school. “We said, ‘Don’t
worry, please take it, use it.’ And they said, ‘Oh, OK, because we don't want anything to
happen. We’ll be responsible.’” That specialist’s apprentice concurred, noting, “We’ve
had parents nervous that their kid would be taking it on the bus to go home, and they’re
worried that another kid would steal it on the way home. They wanted to put a lock on
their backpack.” We cannot refer to parents of disabled youth as being in “a class by
themselves” without unpacking the class distinctions among them.

35
Overview of Chapters
Demographic differences in household income, linguistic background, and
mothers’ education levels only tell part of the story. Using a grounded theory approach, I
identified five key areas (one for each main chapter) in which parents’ understandings of
their child’s media and communication technology use aligned with or differed from
popular, professional, and institutional definitions, and the function of economic, social,
and cultural capital in parents’ meaning-making processes. Each chapter details how
more and less privileged parents articulate what the iPad means to them, how these
meanings shape their management of their child’s media and technology use, and how
these conceptions both conflict with and complement dominant discourse.
Meaning making is an ongoing practice of translating things into things that
matter to people through social and psychological transformation (Hays, 1994). I employ
here an expressly social definition of media, per Gitelman (2006, p. 7), who defines
media as “socially realized structures of communication,” encompassing cultural forms,
learned techniques and protocols, and shared practices. I also make use of Norman’s
(1988) notion of the “conceptual model,” or a mental simulation of a given piece of
technology that designers and users each develop. The conceptual model serves as a
reference point for how users think media and communication technologies should be
interacted with or what it is designed to do. While this cognitive representation is in part
due to a technology’s physical properties, a person’s conceptual models for a device such
as an iPad also emerge from their life experiences, understandings of social norms, and
specific cultural context (Appadurai, 1986).

36
Each chapter thus poses a basic question about how parents interpreted one aspect
of their child’s iPad, framed at the beginning of each chapter with a provocative quote or
two from parents directly. Chapter 2 asks, “What is a mobile communication device?”
While it has been well documented by communication scholars that mobile devices have
symbolic meanings, I illustrate in this chapter how the protective case around a mobile
device is itself a key signifier. It can be detached from an iPad, but it is still part of it. I
discuss how the choice of an iPad case became a significant source of frustration and site
of negotiation between school districts and parents. The iPad case reflected various
tensions in how children with disabilities are perceived: between normalization and the
child’s “special” status, as well as whether the goal of the case was to protect the
computer or empower the child. Working-class youth were the most vulnerable to school
district policies that valued their investment in the technology over an investment in
students’ futures.
In Chapter 3, the question is, “What is an iPad for?” Regardless of
socioeconomic status, most families in my study somehow ended up with two iPads in
their household. All families distinguished between the two in some manner. More and
less privileged parents differed, however, in how they drew these boundaries—one iPad
for “fun” and one for “communication” (among more privileged parents) and one iPad
for “education” and one for “entertainment” (among less privileged parents). Their
conceptual models and social understandings emerged (and diverged) partly due to how
the iPad is designed and manufactured, but also due to class differences in the regulation
of children’s technology use in public and private spaces.

37
In Chapter 4, I ask, “What does it mean to communicate with an iPad?”
Clinicians promoted Proloquo2Go as the “proper” way to communicate using an iPad;
however, many parents interpreted their non-speaking child’s recreational use of iPad
apps and other media as expressing socioemotional, cognitive, and verbal skills—
complicating the fun/communication binary discussed in the prior chapter. I discuss the
need to shift perceptions of both disability and children’s popular culture away from
having to do with deficit and deficiencies (i.e. disability as a lack of ability, kids’ media
culture as lacking educational value), and instead towards more asset-oriented models. It
is however important to note that less privileged parents faced greater difficulty than
more privileged parents in parlaying their children’s expressive media use at home into
recognition among teachers and therapists.
Chapter 5 poses the question, “What is voice?” As a rhetorical trope, voice
reoccurs over history in popular discourse about non-speaking individuals and
augmentative and alternative communication devices; in particular, that high-tech AAC
“gives voice to the voiceless.” But this reduction of voice obscures the ways that
privilege is built into sociotechnical systems—both programmed into the software itself,
and embedded into social practice. More and less privileged parents each constructed
different meanings of voice in relation to the iPad, their child, and perceived possibilities
and limitations of the speaking world.
In Chapter 6, I ask, “How do media shape popular understandings of the iPad?”
This chapter analyzes parents’ interpretations of media representations of the iPad,
Proloquo2Go, and AAC, as well as their participation in the consumption, circulation,
and creation of media about disability, parenting, and assistive technology. More and

38
less privileged parents engaged in some similar but also strikingly different media
practices. While the “disability media world” (Ginsburg, 2012) may be expanding, it also
remains largely dominated by those with parents with access to more distinctive forms of
social, economic, and cultural capital.
In Chapter 7, I conclude by summarizing the ways in which more and less
privileged parents’ lives converged and diverged—not only in terms of their approaches
to the iPad, but also in how they conceived of themselves and their children as
representative or unrepresentative of the other families participating in the study.
Studying kids’ and families’ media and technology use with an eye on intersectionality
allows for more effective coalition building among families pushed to the margins.
Lastly, in Chapter 8’s epilogue, I tie the widening of the “home technology
divide,” inclusive of assistive technology, into a broader discussion of media and
mobility. As Gerard Goggin and Christopher Newell (2003) have noted, while the
wheelchair is perhaps the most iconic technology of mobility and disability, mobile and
wireless devices now provide essential assistance and access. In light of parents’
frustration with various interrelated systems (e.g. computer hardware and software,
educational institutions, and insurance policies), I offer the term “networked im/mobility”
as a way for future researchers to understand how new media technologies—even one as
lauded as the iPad—simultaneously mobilize and immobilize.

Conclusion
During a coffee break at a small local assistive technology conference, I chatted
with a more privileged parent named Donna, the mom of Sam, a 7-year-old non-speaking

39
white boy with multiple disabilities (including autism and spina bifida). Sam had used
Proloquo2Go on the iPad for about a year, but then switched to a dedicated high-tech
AAC device known as a Vantage Lite. Donna told me how Sam used his Vantage Lite to
speak to his grandmother remotely. “Each and every night,” said Donna, Sam “uses
FaceTime through the iPhone. We place the phone through the handle [of the Vantage
Lite] so it stands up, and he talks to his grandma and tells [her] about his day through his
Vantage Lite.” The video chat does not bridge a long distance; in fact, Sam’s grandma
“lives five miles away,” said Donna. “They converse and it’s all for practice. […] It’s a
nightly ritual that we do.”
Karun described how her extended family had participated in a similar ritual back
in Syria. As part of his homeschooling, Karun taught Pargev “communication by
mobiles.” She started out by having him memorize phone numbers that she had written
for him in a little address book. “We would put mommy’s number, daddy’s number,
grandmother, grandfather’s number, all the numbers,” Karun said. After Pargev had
memorized them, Karun wrote each phone number down on a little scroll of paper. Each
day, as part of his lesson, Pargev had to select one scroll and call the number.
Like Donna, Karun enlisted both her social network and the telecommunications
network in order to distribute support for her son’s learning. She tasked each family
member with asking Pargev questions like “‘How are you? What did you do? Did you
do math? Where are you going today? What day is today? What time is it?’ Things like
that, just to make him get used to talk on the phone.” Whereas Donna currently found it
easy to implement daily chats between Sam and his grandmother, Karun spoke of their
family’s routine strictly in the past tense. “I used to do things like these things a lot over

40
there,” she said of life in Syria. Now, the family had to live within a much more
constrained set of economic, social, and cultural resources. “For my husband, he left his
own clinic. We left our parents. Everything else we left there,” said Karun.
A cadre of contemporary critics frequently pen articles and give TED Talks
contending that (to use Karun’s words) “communication by mobiles” is replacing
interpersonal communication in everyday life (e.g. Turkle, 2011). For example, in The
Big Disconnect: Protecting Childhood and Family Relationships in the Digital Age
(2014), clinical psychologist Catherine Steiner-Adair argues that our handheld devices
get in the way of authentic connections and erode “the art of talking” (p. 62). This binary
between face-to-face and mediated communication is false (Baym, 2015; boyd, 2014),
and it is even more complicated among children who primarily “talk” using mobile
media. How Sam, Pargev, and their families experience connection and disconnection
cannot be reduced to the technology alone.
In the coming pages, I argue that the sociocultural, political, and economic
institutions within which families of children with disabilities are embedded shape the
role of new media in their lives. I draw conclusions far beyond the “home screen,”
literally and metaphorically, by investigating the permeable boundaries between the
home and the outside world, between public and private spaces in the home, as well as
between the iPad screen and the screens of other technologies that families regularly use.
Parents’ class background influences how they understand the value and purpose of the
iPad, and their relationships with the social entities shaping deployment of the technology
at home. Tablet-based augmentative and alternative communication devices have
incredible potential to support agency, independence, and personhood, but they do not

41
enter into a vacuum devoid of other injustices. They become part of a system
reproducing structural inequalities; non-speaking children whose parents are best able to
leverage social, cultural, and economic capital to navigate the bureaucracy are currently
benefitting the most.

42
CHAPTER TWO
MAKING A CASE FOR IPAD CASES:
MEANING AND MATERIALITY IN MOBILE COMMUNICATION

Meryl: What are your thoughts on Danny’s iPad case?
Luke’s dad, Rob: It’s a mixed bag.

In The Sociological Imagination (1959), C. Wright Mills charged those who study the
social world with rendering visible the often-imperceptible links between individuals’
intimate stories and narratives of the wider society. Sociologists and anthropologists
often refer to this process as “making the familiar strange” (Conley, 2008). Social
researchers of communication and technology focus in particular on how individual and
collective media practices reflect and create tensions between notions of private and
public, control and resistance, and structure and agency (Boczkowski & Lievrouw, 2008;
du Gay et al., 1997; Gillespie, Boczkowski, & Foot, 2014). Systems of power and
networks of social relations not only shape the materiality of ICTs, but also the socially
constructed meanings generated through media use (Livingstone, 2003; Silverstone,
1994; Wajcman & Jones, 2012).
This chapter focuses on an overlooked component of our personal mobile
devices—their cases. Thriving global and local industries have developed around mobile
accessories such as cell phone charms, iPod chargers, and USB cables (Castells,
Fernandez-Ardevol, Qiu, & Sey, 2007). Cases, though ubiquitous, remain largely
invisible to researchers. The empirical research that does exist focuses more on phones
than tablets as encased personal communication technologies, and suggests that mobile

43
accessories primarily function as status markers and personal fashion statements
(Castells, 2001; Hjorth, 2005a; Katz & Sugiyama, 2006). These are, however, only a few
possible ways of understanding cases. I “make a case,” if you will, for making the
familiar mobile device case strange.
The focus on mobile cases in this chapter is driven by an emergent trend in my
research. I was initially surprised by how much parents had to say about iPad cases, both
unprompted during my initial home observations and when asked directly about them in
interviews. In fact, it became difficult to fully understand what the iPad meant to parents
without also asking them to share what they thought about the iPad’s case. As Luke’s
dad, Rob, notes at the top of this chapter, an iPad case is also “a mixed bag”—it evokes
many layered and sometimes conflicting meanings. These ideas inform what people do
(and do not do) with mobile communication technologies in accordance with their values,
beliefs, and ideals.
Understanding how parents came to view iPad cases, however, also requires a bit
of sociological imagination. Some of the families that I spent time with bought their
iPads and iPad cases using earned income or grants from non-profit agencies; the school
or school district also paid in some instances. Sometimes, one party (e.g. parents) owned
the iPad and the other (e.g. the school) owned the case. Both the technologies and the
technological accessories that ended up in children’s hands were directly and indirectly
shaped in material and symbolic ways by broader political, technical, and sociocultural
systems at play. The mobile case itself, I argue, raises a number of questions about the
relationships between communication technologies, social structures, and personal life
for families across class backgrounds.

44
I begin in this chapter by providing a brief overview of how existing scholarship
provides theoretical and conceptual tools for situating mobile accessories within the study
of communication technologies and everyday life. Second, I describe three main themes
regarding cases that emerged through my interviews and observations with parents: cases
as political, technical, and sociocultural objects. Third, I share three stories that illustrate
how these themes intersect and overlap in families’ lives, all shaped by parents’ varied
access to economic, social, and cultural capital. Lastly, I discuss broader implications for
how researchers might more fully understand meaning and materiality in mobile
communication though getting a better handle on cases. Cases are a strategic research
site for understanding the uneven distribution of power and resources among children,
parents, and schools.

Theorizing Mobile Accessories and Cases
People can form emotional attachments to their personal communication devices,
objects that store within them a biographical “inner history” (Turkle, 2008a). In a literal
sense, smartphone and tablet computer cases enable individuals to hold on to their costly
mobile technologies more firmly and assuredly as they contend with the unexpected (e.g.
dropped devices and cracked screens). Figuratively, people take hold of the world (and
the world takes hold of them), for better and for worse, through the connectivity and
communication afforded by graspable mobile devices. Mobile cases themselves are both
part of and apart from technologies that are “always-on/always-on-you” (Turkle, 2008b).
Cases can have social meanings from a symbolic interactionist perspective
(Goffman, 1959). Domestic technologies are more than functional; they also

45
symbolically play communicative roles in our lives (Csikszentmihalyi & Rochberg-
Halton, 1981; Morley, 2000). Cultural anthropologists of media practices contend that
the tools we use to say things about the world also say things to the world about us
(Ginsburg, Abu-Lughod, & Larkin, 2002; Horst & Miller, 2006; Ito, Okabe, & Matsuda,
2005). Mobile devices and their accessories display status to others (Hjorth, 2005a) and
can outwardly express an individual’s distinctive sense of self (Katz & Sugiyama, 2006).
For example, a fellow Ph.D. student, who studies internet culture, has a cell phone case
covered in a pattern of her favorite emojis.
“Cases” and “accessories” are also not ahistorical terms. Beginning with the
Apple II, personal computers have generally had some sort of casing, an enclosure
usually made of steel, aluminum, or plastic containing the main components of a
computer (Ceruzzi, 2003).
20
Cases are accessories to mobile devices, but mobiles can
also be accessories to other computers. For example, personal digital assistants (PDAs)
were marketed in the mid-1990s as accessories to the desktops and laptops that many
people already owned (Wilson, 2014). Palm Computing’s late 1990s marketing
campaigns imagined “women as adornments and assistants to men in the workforce and
as primary (often sole) familial workers in the domestic sphere” (Rodino-Colocino, 2006,
p. 385). Mobile devices have their own accessories, are accessories (to a person’s body
or to their personal computer), and the discourses around mobile devices can position
their bearers as accessories to more powerful entities.
PDAs and laptops were the first mass market portable computers to be used for
augmentative and alternative communication (Chapple, 2011), although the rhetoric
around iPads as AAC devices emphasizes their “revolutionary” nature (Haller, Blaser,

20
The Raspberry Pi is one significant exception, a single-board computer without a case.

46
Jones, & Naidoo, in press). Yet while those earlier portable computers were initially
marketed as being primarily suited for work, the iPad was introduced to the consumer
market in 2010 as a computer designed expressly for leisure, recreation, and creativity
(Burgess, 2012). This initial stylistic framing of the iPad contrasts with the manner in
which assistive technologies are generally characterized, emphasizing medical necessity
and task completion over self-expression and identity play (Pullin, 2011a).

How Cases Matter
Prior research in media sociology, cultural anthropology, and critical studies
provides a starting point for understanding the meanings that people derive from their
mobile cases, as well as from their cased—or uncased—mobile devices. The following
section details how mobile device cases matter to parents of iPad AAC users as material
and symbolic artifacts, mapped along various political, technical, and sociocultural
dimensions.

Political
When bundled with educational technologies in the form of iPads, cases cannot be
understood outside of institutional politics. In this respect, cases represent parental
proactivity outside of limitations set by the school district, and a means for the child to
prove their competence to the school district in light of the district presuming the child’s
incompetence in handling the iPad.
Parental proactivity. Researching, buying, or making an iPad case (often in
addition to independently obtaining an iPad) was one way that some parents felt they

47
could move forward in helping their child when impeded by school district red tape.
Many parents reported that the assistive technology assessment and delivery process
across various school districts in Southern California could take multiple years and
involve many false starts. “About three years we start to fighting for communication
device,” said Stephanie’s mom, Marisa.
Instead of waiting for schools or insurance companies to provide one (or
ultimately deny their request), a number of families across income levels decided to start
by obtaining an iPad and iPad case (though not Proloquo2Go) for their child through the
consumer market. “My wife and I have always tried to be proactive and tried to go one
step ahead as much as we can for our child,” said Stephanie’s dad, Nelson—especially
when the school district was one step, if not more, behind. Though Nelson and Marisa
indicated to me that their average yearly combined household income was between
$25,000-$49,000 (slightly below middle class in Southern California), “I went and got
my own [iPad],” said Nelson, “just so that, whether or not they give us one, we’re going
to try to help her with it.”
Finding the right iPad case was particularly important to Nelson, a self-described
computer enthusiast. “On my own, I went out and got that Griffin [case], which is
actually little bit better than the OtterBox [case],” he said, referring to two mobile device
case brands known for their toughness and durability. “I’ve done my homework,” he
said, “and it’s supposed to be the military version.” At the Individualized Education Plan
(IEP) meeting for Stephanie in which he and his wife first broached the topic of their
daughter using an iPad for AAC, “[the district] had a technology person there that was
like, ‘You guys know more about this stuff than we do,’” Nelson told me proudly.

48
When the school district did ultimately provide Stephanie with an iPad for
communication, the case that the district selected (without Nelson or his wife’s input)
was far flimsier than the Griffin. When Rachel suggested the family purchase a new case
for the home iPad to differentiate it from the school iPad (as both were colored black),
Nelson replied defensively, “Maybe the school one, because that’s a Griffin.” Nelson’s
research into and purchase of the Griffin case exemplifies how iPad cases can symbolize
parental proactivity by turning to the private market when social services fail.
Proving competence. In the hands of people with or without disabilities, it does
not take much for an iPad to break. For example, Thomas had been using an iPad that the
regional center had loaned the family until the school provided one for him. Thomas’
mom, Daisy, thought that it was cruelly ironic that Thomas shattered the regional center’s
iPad because “the week before, Caren was saying that she’d recommend a nice case [for
the school-issued iPad], the heavy duty.” When I complemented Danny’s parents on
their cool looking iPad case, Danny’s dad, Peter, replied quickly, “that one has been
thrown across the garage” and yet managed to withstand the impact. Concerns about the
iPad breaking, and the resultant replacement costs, are certainly not unwarranted among
either parents or school districts.
21

Some parents though felt like school districts took this concern too far, leading to
a default characterization of their child as inherently reckless with technology. Schools
frequently operate under the assumption that children with disabilities must prove their
competence in order to be granted it (Biklen & Burke, 2006). Less privileged parents had

21
If the child broke the school-issued device while on school grounds, then the school or the school district
(depending on the funding source) was responsible for paying for a replacement iPad. If the child broke it
or lost it outside of school, it was unclear (at least to me, after talking with parents as well school district
assistive technology specialists) if the school district or parents would ultimately be held financially
responsible.

49
fewer resources at their disposal and greater difficulty in defending their child in light of
this characterization. Said Nelson, “[The school district was] very hesitant giving us this
device in particular because they thought [Stephanie] was going to drop [the iPad], or she
wouldn’t be able to hold on to it.” Nelson did not agree with the school district’s
characterization of his daughter. With the iPad that Nelson and his wife purchased on
their own, he said that “[Stephanie has] dropped it a couple of times, but as you can see,
the way [the case is] designed, 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, thus giving them
leverage in denying her services.
The concern over children breaking the iPad also shaped district assistive
technology policies even after iPads were distributed for use as AAC devices. In Moira’s
old school district, her mother Vanessa said that out of concern “that kids were throwing
them in the pool, or breaking them,” the school district suddenly “changed their policy
and said that iPads only remained on campus.” This was after Moira had already been
using the iPad and Proloquo2Go for over a year. Vanessa believed that this policy
change was a violation of Moira’s IEP, which explicitly said that her iPad for AAC was
for community use and was also to be used at home as part of Moira’s in‑home autism
services, which also happened to be funded through the school district. Vanessa told me,
“I wrote [the school district] and said, ‘This is in violation of her IEP. I am asking that
you give me a window of opportunity to purchase her a device for the home.’”
But one day, Moira’s iPad went to school and never came home. “They totally
just disregarded my request that they give me at least 30 days to purchase her a device.

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That was really lame,” said Vanessa. She did not have other resources at her disposal for
advocacy, such as the finances to hire a lawyer or a social network of people to
recommend further recourse. The school district’s preemptive measure was shortsighted,
more focused on protecting the iPad in the short term than promoting Moira in the long
term.
Moira and Vanessa eventually moved to a new town, where, much to Vanessa’s
relief, Moira’s new school district provided her with an iPad and iPad case that Moira
was allowed to take wherever she went. Vanessa was “bothered [that the old district]
made this blanket decision” because Moira “really takes good care of [the iPad] for a
kid.” As proof, she stood up during our interview, went to Moira’s bedroom, and asked
Moira to bring her new iPad into the living room to show me. “This case is great,” said
Vanessa, holding the case up, “[Her new school district] provided this one.” The new
case was chunky and pink, made of rigid foam.
The straps, however, had fallen off, leaving Moira to only use the case’s built-in
handle. Vanessa did not have the disposable income to purchase a new case on her own,
yet the family made due. “She can’t just be hands free with it, but she doesn’t mind
carrying it,” said Vanessa. She emphasized Moira’s responsibility with the iPad, saying,
“[Moira] has total ownership of it. It’s the first thing she grabs before we leave the
house.” Moira’s new iPad case enabled her to demonstrate her competence, whereas her
old school district has presumed her incompetence. In this way, cases could both shield
the iPad and shield the child’s dignity.

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Technical
While tablet computers have particular physical properties (i.e. screen size,
weight), iPad cases have their own as well. These properties can materially shape the
relationship of the iPad to space and to bodies. iPad cases both afford and constrain
technical possibilities, opening or closing up social settings in which to use the
technology and promoting or preventing certain kinds of social interactions. A tension
emerged in parent interviews and observations between protecting the iPad from the
elements and yet exposing the screen for the child’s easy use.
Relationship to space. Compared to the pristine white walls of subdued Apple
stores, iPads are used in much dirtier and louder spaces. Interviewing families in the Los
Angeles area, the pool and the beach came up as potential sites where the child might use
the iPad as a communication device, but only if used with a waterproof case. More
privileged families spoke of owning multiple iPad cases, and that these options allowed
to them a certain freedom of movement with the device. For example, Eric’s mom,
Anne, was excited that Eric would be going to a swim camp for children with disabilities
during the upcoming summer. When I asked her if Eric would be carrying his iPad
around camp, she replied, “I think we’ll probably have to get a better waterproof cover
for it so it isn’t affected.” Danny’s dad, Peter, mentioned, “We do not take it to the pool,
but I have taken it to the beach because I have a case that’s waterproof. I just switch it
over and let [Danny] use my waterproof [one].”
Families need not go as far as the beach to find a context in which the iPad
requires protection, seeing as water is not the only substance that might harm an
unprotected iDevice. Said Nelson, “I remember when [Stephanie] took her [Mom’s]

52
smartphone, and dipped it in ranch dressing accidentally. She likes to dip stuff, and it
survived. We just cleaned it.” Spaces such as kitchens and dining rooms can potentially
introduce substances that compromise the integrity of the device unless covered by an
easily cleaned case.
Besides expanding the geography of communication, a case can also widen the
proximity of communication, specifically in loud spaces. Special iPad cases now come
with speakers that amplify sound output from the iPad. Moira’s mom, Vanessa,
complained about the iPad’s limited volume. “So if we’re at a restaurant or in a loud
place,” she said, “then people can’t hear [Moira].” Instead, “what I started doing
recently,” said Vanessa, “and I don’t know if this comes off as rude, but if they can’t hear
her, then I pick up the iPad and I show them [on screen] what it says.” Vanessa was
curious, since “now, they make cases with additional speakers,” if such a case might help
Moira speak for herself in those situations. An iPad case with built-in speakers might
enable a person to communicate more independently, boosting both the volume of their
voice output and their freedom to converse with co-located others in loud spaces.
Relationship to bodies. Some iPad cases made it harder for a person to use the
device while their body was in a certain position. A number of cases came with built-in
or additional stands to angle the iPad screen towards a person while seated at a table.
Cory’s mom, Perri, was slightly dissatisfied with Cory’s iPad case, which had a handle
that could also be used as a built-in stand. “I was hoping that this,” said Perri sitting next
to me at a café table as she gripped the handle, “would be a little wider so that when it
stood up like this”—she rests the handle on the table and bends the iPad backwards—
“[Cory] wouldn’t knock it over, or when it was up like this”—she flips the iPad and

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demonstrates how the handle raises one end of the iPad up about 30-degrees off of the
table—“it has a better angle.” In the interim, Perri had bought another stand for Cory’s
iPad case “that puts it up more to 45‑degree angle […] but it’s like a big metal thing,
so…” Perri had found a temporary but unsatisfying fix for Cory to use the iPad while
seated next to others at a table.
The right kind of case material can promote easy handling. Said River’s dad,
Mark, “When I got his [iPad] Mini, I got a really light case but it had almost like a
velvet…it was almost sticky. Even though it was smooth, you get a little grip on it.”
Hands can also fumble with complicated cases. Mark said that the same case also had a
design flaw. “It didn’t take too long before that one got just destroyed because the cover
just flapped,” he said. “It didn’t have like a little Velcro or anything, so he was grabbing
it by that.”
This coverage issue also poses a problem when an AAC user wants to
communicate quickly through the technology. For example, Talen’s mom, Kameelah,
said she was “looking for carriers the other day, and I didn’t find one. […] I was like,
where is one that the face will be out? Like, it’ll be protected, he can carry it, but he will
just lift it up and poke. Instead of lift it up, open it up, pull it out, and do all of that.” The
new case that Mark’s brother, “the Mac guy” of his family, had gotten River for
Christmas sounded closer to Kameelah’s ideal case. Said Mark, “It’s mostly nylon strap
type of material. It’s got a little thing you could slide your hand in, on the back. You can
flip it like a little candy vendor tray.” Despite their sleek appearance, iPads do not
seamlessly meld to bodies; iPad cases expose those very seams.

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Sociocultural
Social stigma and acceptance. Many parents mentioned that while their children
were socially ostracized in many other ways, they were more easily accepted among
typically developing peers due to the iPad being perceived as something “cool.” Danny’s
mom, Alice, said that iPads “tend to be a little more socially acceptable [than a dedicated
AAC device]. A person sees someone like Danny with an iPad, and it’s not weird.”
Appealing cases also carry a certain degree of objectified cultural capital among other
middle and upper-class parents. Alice, proudly noted, “I’ve had lots of parents comment
on, ‘Where did you get that case? I’d love one for my kid.’ It never even occurs to them
that my kid has a disability. It’s just, ‘Wow! That’s a really cool case.’” As highly
visible markers, cases potentially enable a way to “pass” (Brune & Wilson, 2013), albeit
temporarily, as the parent of an able-bodied iPad user with an off-the-shelf iPad case.
Gendered labor. While the iPad case may partially protect iPad, the technology
does not take care of itself. Cases, as technologies, can make life easier in some ways,
but they can also end up creating more material labor (Cowan, 1983) and “emotion work”
(Hochschild, 1983) for the caretakers overseeing the child’s technology use at home, who
are very often mothers. Kevin’s mom, Rebecca, said that even though Kevin’s iPad case
was a “rubberized heavy duty” one, she had to take care to put it in his backpack each
night just right. “It doesn’t have a cover on the front, so it just goes in his backpack. But
I just have to put it so that it’s not…the screen isn’t exposed to the outside of the
backpack.”
Thomas’ mom, Daisy, said that there had been a number of occasions in which
Thomas’ iPad had been misplaced at school because of its case. She turned the iPad over

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and pointed to a place on the back of the case where a label with Thomas’ name had once
been. Another boy in Thomas’ class also uses an iPad for AAC with the exact same case
as Thomas, one made of army green-colored hard plastic. Daisy says that Thomas and
his classmate have frequently accidentally ended up with one another’s iPads at the end
of the day, only to be discovered by their moms after riding on the school bus and
returning home.
While all-too easily exchanged, these technologies are not interchangeable. When
these mix-ups happen, Daisy says that Thomas “gets frustrated” because he can’t
communicate, and because of this, he acts out. Though the other boy also uses
Proloquo2Go, the software is customized in such a way that would make it difficult for
another person to borrow and use. Thomas also uses part of Proloquo2Go as a visual
schedule of his daily activities, which helps him with self-regulation and feeling calm.
To add to the families’ frustrations, one of the moms then has to drive over to the others’
house to swap iPads. Confusion with the cases at school produces extra labor, materially
and emotionally, for Daisy and the other boy’s mother.

“Case” Studies
The noun “case” has other meanings besides a physical object. The case, as a
concept, is at the heart of qualitative social science. In their edited volume, Ragin and
Becker (1992) contend that qualitative social scientists should ask what any given social
phenomenon is “a case of” in their analyses. The “case” is where ideas and evidence
interact. In the examples above, I have provided cases, per the Ragin and Becker
definition, of parents making sense of their child’s technology use, partly informed by

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their understandings of the technology’s accessories and the resources that parents have
at their disposal. Mobile device cases play a role in how these parents comprehend the
affordances and constraints not only of the iPad itself, but also what can and cannot be
done considering the social, cultural, and political contexts that undergird potential uses
of the iPad as an AAC device. The following extended examples demonstrate how the
material and symbolic dimensions of cases overlap in parents’ meaning making processes
with technology.

Beatriz
The story of 10-year-old Beatriz and her parents includes themes of the political
(the iPad case as symbolic of the child’s presumed incompetence), the technical (the iPad
case as having a material relationship to bodies), and the social (the iPad case as social
stigmatizing).
Beatriz lives in a one-bedroom apartment with her parents, David and Pilar, and
her older sister, Ariana. Beatriz and Ariana share the bedroom, while David and Pilar
sleep in the living room. When I visit Beatriz and her family in the living room, we sit
spread out across her parents’ bed, a small sofa, and the rolling chairs for two desktop
computers. David and Pilar are immigrants from Mexico; he is fluent in English and she
is not, so David translates for me.
Beatriz initially had a thick rubber, bubble gum pink-colored Big Grips-brand
case on her iPad. When I first interviewed David in 2013, he told me the case was
“helping a lot because several times she has dropped the iPad, and it just bounces. It
never breaks!” He also liked this case “because it was thick but it was easy to grab.”

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School had selected the case, and while David was happy with what they chose, the
process was not transparent to him. “I try to find more,” David said of the Big Grips
case, “but I cannot find. I don’t know where they bought it.” When I interviewed David
and Pilar, a year later, I noticed that the pink Big Grips case was gone, replaced with a
black nylon iPad case. Again, the district’s decision was opaque. School did not make
David, Pilar, or Beatriz aware that they would be replacing the case. “I don’t know why
they change it,” he told me.
Functionally, the new case actually made communication even more difficult for
Beatriz, David said. He demonstrated how once the cover on the new case was lifted,
revealing the screen, there was no Velcro or magnet to keep it open. The case, it seemed,
was designed to stay closed. “For the protection of the device, it’s nice,” he said, “but for
daily use, I don’t think.” David believed that the design of the case impacted how Beatriz
used the iPad for communication. “Probably, this has to do with encouragement to use it
or not use it, the way [the case is] designed,” he said. While the case secured the screen,
it constrained communication. To David, the case symbolized the school district’s
skewed values and priorities. Of the district, he said eloquently, “They put more
importance on the protection of the device than on the use of it.”
While the school put little thought into how this change might impact Beatriz,
David thought that the switch had a far-reaching impact. It shifted the way in which
Beatriz interacted with the iPad Mini that he had bought for her to use at home. Said
David, “She takes [the iPad Mini case] off. Maybe that’s what she needs all the time. I
think she feels she’s a little restricted with this one [the school-issued iPad], and that’s
why on her own [iPad], she wants it to be free.” David characterizes Beatriz’ removal of

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the iPad Mini case as an act of liberation. She could enact this particular form of
resistance without consequences from her school since Beatriz’ father owned the iPad
Mini and its case.
Beyond function, the new black iPad case sent a message. It communicated
something about Beatriz, but it communicated the wrong thing about her, thought David.
To him, the new case said, “she’s careless, beware now, she’s going to drop it, she’s
going to break it.” The new black case was also more stigmatizing than the old pink
case. Said David, “It does look for someone that is careless. It’s good for that kind of
people, but she takes care of things. She gets it dirty, but she takes care of it by not
dropping it, by not throwing it.” Just as with Stephanie and Moira, the school district
presumed Beatriz’ incompetence, symbolized by a case that “doesn’t look appealing. It
doesn’t look chic,” David said.
The irony was that Beatriz actually cared a great deal about the aesthetics of
iDevice covers. As we were discussing the new black iPad case, Beatriz went into her
bedroom and brought back a clear plastic pencil case full of rubber iPod Touch and
iPhone cases. “Look!” she said orally as she opened the case to show her mom. David
turned to me and explained, “She has this tendency of collecting. She has an obsession
for covers.” He then turned to Beatriz and asked her, “Right? You like covers?” “Look,
look! One… two… three!” said Beatriz, as she handed the cases off into her mother’s
hand, one by one. Cases are a low cost toy for Beatriz. Said David, “we get them, but
we try to get the cheapest.” I asked him if she ever put them on the family’s iDevices.
“She has,” he said, “probably, instead of playing dolls, she plays dress‑up iPad.” How

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unfortunate then that Beatriz’ communication aid was clothed in the equivalent of a drab
school uniform.

Luke
The experience had by Luke and his parents also raises issues of the political (the
case as reflective of parental proactivity), the technical (the case as having a concrete
relationship to both space and bodies), and the social (the case as relatively socially
stigmatizing).
Luke’s parents bought his iPad to use for AAC, but the school district chose and
purchased the iPad case. Said his mom, Debra, “We wanted to get the ball rolling, so we
said, ‘Let’s just get the iPad and get it going.’ Then [the school district] said, ‘Oh you
need a case, you need a case.’” The school district had various “criterion” for the case
they would buy, said Luke’s dad, Rob, rules that he did not fully agree with. One was a
case with a speaker because “they wanted more volume out of it, which I thought was
silly, because I think the [the iPad’s] plenty loud.” The school also wanted a case that
could be carried. Rob thought that, “the case that came with it […] was reasonably
carryable.” But the school ended up choosing the iAdapter, a case with a built-in speaker
and a combined carrying weight, with the iPad, of 2.5 lbs. According to the installation
and operating instructions for the iAdapter, there are 9 screws that hold the front and back
shells of the case together, making the iAdapter a semi-permanent part of the iPad.
22

While amplification and portability were the school’s top priorities, those things
were “relatively arbitrary” to Rob. Luke’s parents valued the iAdapter’s protection and
sturdiness. “It has saved us a couple times when I’ve dropped it,” said Debra. Rob

22
http://www.amdi.net/products/iadapter/iadapter-cases/iadapter-4

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mentioned, “I broke [Debra’s] iPad. It wouldn’t have happened if I’d had that case.”
While the school wanted the iAdapter because the case afforded mobility, Rob liked that
the iAdapter case immobilized the iPad. “What’s good about [the case],” said Rob, “is
the stand and all that kind of stuff and the fact that it’s designed to be used at a table.”
The stand “holds it really firmly, so you can hammer away on the thing like it was a
built-in screen. For classroom instruction, for sitting around and looking at things, that’s
really good.” The iAdapter case temporarily transformed the iPad into a desktop
computer
Compared to Rob though, Debra had much more of a love-hate relationship with
the iAdapter case. To her, the large, heavy case took away from the aesthetics of the
iPad. “I think it looks ridiculous… It destroys the fact—I think, we think—of how sleek
an iPad is,” she said. During my discussion about the case with Debra, Luke’s teenage
brother Spencer walked through the kitchen and chimed in, “I don’t like the look of it. I
can yell all about it and trash talk it, but it will still be there.” “It’s horrible. We make
fun of it all the time,” said Debra. “It looks like an old Dynavox.” Debra felt like the
iAdapter case made the iPad look like a dedicated device, and perceived this as a negative
and socially stigmatizing association.
When Rob came home and joined in on the interview, he expressed a different
view from his wife. Said Rob (who was unaware of Debra’s earlier comments), “What
people don’t like about it is the, ‘Hey, it makes it look like one of those devices.’ I agree,
it does that… Some people are really sensitive to those issues. I don’t. We’re not.”
Instead, Rob expressed that the stigmatization of dedicated devices was not “as big a
deal” as the social stigma surrounding autistic individuals stimming in public. Said Rob,

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“[Danny’] running around and jumping in circles and doing other things are what identify
him as a little bit odd!” While the case on the iPad could be changed, Luke’s stimming
was an immutable part of his identity.

Pargev
Hearing from Pargev’s mother, Karun, their story illuminates significant political
(the case as symbolic of parental proactivity), technical (the case as having a material
relationship to bodies), and social issues (the case as symbolic of gendered labor).
As I noted in Chapter 1, Pargev and his family had recently fled from war-torn
Syria and sought asylum in the U.S. Neither of Pargev’s parents were employed at the
time of the interview. Pargev’s dad, a practicing doctor in Syria, was looking for work in
the U.S. Karun said she was “not working, to take care of [Pargev],” but said, “I’m
starting a new business with scarves and jewelry.” She showed me the room where she
made her handmade goods, the space in their two-bedroom apartment likely designated
by the building’s developers as the home office. At the end of our interview, around the
holiday season, she handed me a business card (also self-produced), saying that I should
come to her if I wanted to purchase any gifts.
At my first observation in August 2013, Karun expressed that she was concerned
that the iPad that the school had provided for Pargev was too heavy, and that its weight
deterred him from carrying it places and communicating with it outside the home. Karun
asked Rachel if the school might provide Pargev with an iPad Mini instead of the full one
he currently had, a Mini that he could carry in a bag with a strap. Rachel responded that

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the school could provide the iPad Mini, with the caveat that “the cases that have straps,
they’re not as durable” as the strapless iPad case that the school originally provided.
My second time observing, two weeks later, Karun told Rachel, “By the way,
Naomi [the school district’s assistive technology specialist] says she’s gonna get the Mini
iPad. It will be really nice to take it wherever we go. The size is perfect. She didn’t say
when. You want to remind her?” “It’s probably better if it comes from you,” Rachel told
Karun, “it” being the reminder message. “Okay,” replied Karun, “It’s been a while.” At
another point during the session, Karun asked Rachel if she could also talk to the school
speech-language pathologist, on her behalf, about making changes to the words available
to Pargev on his Proloquo2Go software. Karun told Rachel, “It’s better if you ask
because you’re more professional.” This exchange highlighted the distinctions in
institutionalized cultural capital between Karun and Rachel. Karun thought that the
school was more likely to respect and listen to Rachel than herself, toward whom they
had been unresponsive.
Considering Karun’s crafting initiative and her frustration in working with the
school, it was not surprising that she expressed interest in making a case for the Mini
iPad. At the time of our interview in November, two months after my second
observation, the school district had still not provided the Mini. Karun explained her
motivation for making an iPad Mini case for Pargev as such: “The best way is if I try
harder, when I take him out, to take the iPad with me because it’s big and he is forgetting
it. If this was smaller and hangable here somewhere [points to Pargev’s chest], as a
messenger bag or somewhere…I will eventually [make the iPad Mini case] because I got
an email from the school district. They will exchange [his current iPad] with Mini.”

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Karun’s hands were tied in terms of making any progress with the school district, but a
handmade iPad Mini case was one way that she could provide for her child.

Grasping the Encased, Unencased, and Re-encased
In mobile communication research, device cases and accessories are a largely
understudied area. Talking with iPad owners and users about their cases and covers
presents an opportunity for examining the interplay between the symbolic and the
material in communication technologies. How individuals perceive mobile
communication technologies requires understanding how their devices are encased,
unencased, and re-encased. Both in relation to and independent from the devices
themselves, cases have their own complex social meanings, at least in part informed by
users’ class status and their relationships to the social institutions shaping use of the
encased device. Below, I discuss these findings on cases in relation to three strands of
research on the sociocultural dimensions of communication technology use: the notion of
technology as materially and symbolically durable, the mobility of mobile media as a
static quality, and the links between identity and digital communication technologies.

Durability
Latour (1991) memorably wrote that “technology is society made durable,”
meaning that technologies reflect some moment of social stability in which they are
initially constructed. Lievrouw (2014) extends this formulation from the field of science
and technology studies to media studies, describing technology as communication made
durable. Others have argued that durability is itself an unstable concept, one continually

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made and unmade through sociotechnical practices (e.g. Moser, 2006b). The ways in
which iPad cases are incorporated into families’ lives reflects these various conceptions
of durability and the tensions among them. How durable a communication technology is
depends on the economic, political, and social infrastructures in which the technology is
embedded. Apple, like any innovation and profit-driven computer company,
purposefully designs their technologies to become obsolete with successive generations
(Slade, 2006). Cases can prolong the material durability of an iPad depending on the
environmental conditions to which it is exposed. For example, as parents mentioned, this
includes sand, water, and even ranch dressing.
Durability is also relational, for it is partly determined by insurance policies and
warranties. Insurance companies do not consider iPads to be “durable medical
equipment,” and thus the tablets are not covered when requested by parents for their child
to use as an AAC device (Hager, 2010). In this absence, school districts enact the power
to assign their own value to durability. They want to protect their investments in
technology over time, often more so than their long-term investment in students. As in
the instances of Stephanie, Moira, and Beatriz, those students from lower-class
backgrounds are often the most vulnerable when these decisions are not in their best
interests. Cases underscore the iPad’s inherent material and symbolic fragility, as well as
the fragile relationship between citizens and social services.

Mobility
Across public, private, and hybrid spaces, mobile device cases allow us to reflect
both on how media are housed and how homes are mediated. For example, with straps

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and handles, cases enable mobility outside of the home, as desired by Moira and Pargev’s
moms. Yet parents (frequently mothers) had to remember to place encased devices in
just the right way inside of backpacks. Mobile telecommunications technologies in the
postwar era tend to reflect desires for portable forms of domesticity. Spigel (2001b)
identifies an evolution from “theatrical models of home to vehicular models of home” (p.
408), and finds evidence for such a shift in the marketing of portable televisions and
receivers in the 1960s. The very design of these technologies emphasized their mobility;
whereas TV sets once looked like living room furniture, portable TVs were packaged
inside cabinets resembling luggage.
Portable computing devices have taken various names and forms since the 1980s:
luggables, transportables, portables, totables, uprights, laptops, notebooks, PDAs, tablets,
and more recently, phablets (a portmanteau of “phone” and “tablet”). Shifting notions of
“mobile computers” and their assorted cases and enclosures are co-constituted by
conceptions of work and leisure, as well as the relation of the embodied human subject to
domestic space. For example, parents described how cases strategically immobilized the
iPad for use at a table during mealtimes or on a desk in the classroom. Luke’s dad
emphasized this transformation when he lauded the iAdapter case for allowing Luke to
“hammer away on the thing like it was a built-in screen” without fear of the hammering
shattering the glass screen. Cases can impact the extent to which a mobile media and
communication device comfortably travels within and outside of home and school
without making device owners and users anxious.

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Identity
Mobile communication technologies and accessories are not symbolically
seamless extensions of the body, as has been historically argued in media studies
(Fortunati, Katz, & Riccini, 2003; McLuhan, 1994), but are sites at which identity and
personhood are negotiated. This is particularly true for individuals with disabilities,
whose experiences with personal communication technologies are bound up with the
interests of those administering and overseeing the use of these tools. For example,
Beatriz’ was assigned an iPad case that did not at all reflect her personality or interests.
The school never considered letting Beatriz’ have a choice in her case. This ultimately
impeded her from easily communicating using the technology.
By another name, cases are physical analogues to digital skins. A skin refers to
the customization of an avatar’s body, associated with online modding and game play.
Like cases, skins are easily interchangeable in that swapping one out for another does not
fundamentally change the underlying mechanics of the game. Skins though materially
and symbolically color and are colored by their online environments. For example,
avatars in virtual worlds generally come with a limited range of pre-set skin tones and
matching body parts (Boellstorff, 2008; Kafai, Cook, & Fields, 2010; Nakamura, 2002).
Skins can reproduce “real world” hierarchical social structures.
Cases, like skins, are a means of identity performance through altering the
appearance of technologies. For example, Beatriz’s dad viewed her “obsession with
cases” as akin to doll play, and her removal of the case from the family’s iPad Mini an
act of emancipation. Her district-issued iPad case did not fit her style. The extent to
which a mobile case is stigmatizing (or normalizing) needs to be considered relative to

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other forms of social stigma that the bearer of the case might experience. For example,
while Luke’s mom was concerned with the iAdapter case making the iPad more overtly
like a piece of assistive technology, Luke’s dad weighed the stigma associated with the
object against the stigma associated with Luke’s stimming behaviors.

Conclusion
The research presented in this chapter illustrates the political, technical, and
sociocultural dimensions of mobile cases. Beyond their use as fashion or status symbols
(Castells, 2001; Hjorth, 2005a; Katz & Sugiyama, 2006), they also serve as a strategic
research site for understanding the unequal opportunities that upper, middle, and
working-class parents have to access and mobilize economic, social, and cultural capital.
Politically, cases can symbolize parental proactivity in response to a breakdown in social
services, as well as the competence of a child presumed to be incompetent by others.
Technically, cases have particular material relationships to bodies in space that shape
their perceived functionality. With respect to social and cultural norms, iPad cases can
also raise issues of self-presentation, as well as gendered expectations of household labor
in taking care of domestic technologies. The study of cases opens up key questions in the
study of the social uses of mobile communication concerning durability, mobility, and
identity. The next chapter extends the discussion of the symbolic meanings parents
associated with cases, primarily how different cases were sometimes used by parents and
professionals to distinguish between at least two different iPads at home, language that
differed among more and less privileged parents.

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CHAPTER THREE
THE “FUN IPAD” AND THE “COMMUNICATION IPAD”:
(MIS-)MANAGING CHILDREN’S TECHNOLOGY USE
AT HOME AND SCHOOL
We call [Raul’s iPad with Proloquo2Go] his “talker.” […] We realized, we can’t call it
“an iPad” because my husband had one already. We didn’t want him to confuse the two
because, truly, we wanted him to know, “This is your voice,” and that’s it. Then we had
a blue cover around it. We made it clear: “This is yours.” We put his name on it and my
husband’s is the “fun iPad.” It has the games, the apps, the cartoons, the music.
—Nina, mother of Raul

[My] son has the original iPad. That’s his “play iPad.” […] When he turns this one on,
[…] he doesn’t try and find anything else because now he knows this as his
“communication device.” Since this case has been on it, it has been nothing but “the
communication device.”
—Perri, mother of Cory

In the last chapter, I discussed various ways in which parents perceived iPad cases to be
more than fashion statements and status symbols (as mobile accessories are usually
understood), but as having a wide array of meanings tied to larger political, technical, and
social systems. Beyond those core themes, there was another way in which some parents
talked about iPad cases and encased iPads. In the quotes above, Nina and Perri describe
cases as visual delineators between two types of iPads used by their children at home:

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iPads for fun and play, and iPads for vocalizing and communicating. “We made it clear”
that the two machines were different, said Nina, a distinction made visible by the blue
cover on the “talker.” For Perri, the case cemented the iPad with the Proloquo2Go app as
“nothing but ‘the communication device.’”
Today’s mobile media are the digital equivalent of Swiss army knives
(Satyanarayanan, 2005), capable of being the one tool on which we rely daily. Mobile
devices are convergent whether or not we desire them; for example, it is difficult
purchase a mobile phone nowadays that only sends and receives phone calls (Jenkins,
2006a). At a time when there are few things that a single communication technology
cannot do with the right app installed, I was surprised to hear numerous parents talk about
their children ideally using two different iPads, each for limited purposes: fun or
communication. I was also taken aback that most children in my study (15 out of 20),
across socioeconomic groups, had access to two or more iPads outside of school. At least
one of these iPads had Proloquo2Go installed (owned by the school district or the family)
and the family owned at least one other iPad (which may or may not have had
Proloquo2Go as well).
23

This chapter explores the following questions: What characterized parents who
made (and did not make) distinctions between the “fun iPad” and the “communication
iPad”? What other language did parents develop for the two devices? What purposes did
this differentiation serve, and for whose benefit? And how does this phenomenon reflect,
and perhaps refract, our broader understandings of how children’s media and technology

23
Fifteen children had access to two or more iPads outside of school at the time of my last contact with
families, though families may have acquired one since our last encounter. For example, Beatriz’ family did
not own one at the time of my first interview, but did a year later at the time of my second interview. As
for the other five families, three did not own an iPad at the time of my observations, and information is not
available for the other two.

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use is regulated in public and private spaces (Buckingham, 2007; Ito et al., 2009;
Livingstone, 2002; Seiter, 2005; Selwyn & Facer, 2013)? I begin this chapter by
providing an overview of how more and less privileged families in my study came to use
more than one iPad at home. Next, I discuss key differences in how both groups of
parents distinguished between the two devices. I then detail how children’s use of iPad
apps for fun and communication at home were promoted and prevented through locking
children into or out of the technology. I argue that these naming practices are not
arbitrary; they reflect parents’ differential access to economic, social, and cultural capital
and reinforce structural class biases.

Demographics of iPad Ownership
As I noted, the majority of children in the study (75%) had access to two or more
iPads outside of school, at least one of which had the app Proloquo2Go installed. Recent
studies of tablet computer adoption by U.S. families report that more than half (55%) of
2- to 10-year-olds live in households that have at least one tablet device at home
(Rideout, 2014). Of the 15 children in the study with access to two iPads at home, 9 were
using iPads for augmentative and alternative communication (AAC) that were provided
by the school district. The other 6 children were using iPads with Proloquo2Go that were
owned by their parents but brought to school daily. Research suggests that 68-73% of
individuals using an Apple device for AAC obtained the device through a family
purchase (McBride, 2011).
Ownership of an “additional” iPad among my research participants was clustered
around the highest earning families. Thirteen of these 15 families resided in Los Angeles

71
County, which had a median income of approximately $56,000 from 2008-2012 (U.S.
Census Bureau, 2014). While about half (7 families) reported earning $100,000 a year or
more, the rest were middle and lower-income (two reported an income of $50,000-
$99,000 a year, four reported a yearly income of $25,000-$49,000, and one family
reported earning less than $25,000 a year).
24
This distribution is in line with current
research indicating that tablet ownership among families with young children differs
significantly across income levels. While over three-quarters (77%) of high-income
children (>$100K) live in households with a tablet computer, only about one-quarter
(27%) of low income children (<$25K) have access to one at home (Rideout, 2014).
These numbers only tell part of the story though. Families with different
socioeconomic backgrounds ended up with their additional iPad(s) in various ways. Less
privileged parents tended to obtain them through outside funding sources. For example,
while Talen’s parents technically owned both of his iPads, one was a gift from one of
Talen’s former therapists, and the other was provided through a state grant. For some
less privileged families, investment in an iPad required saving up over an extended period
of time. Beatriz’s dad said, half-jokingly, that if “she’s gonna be using it, it’s worth it to
save some money every weekend, to stop buying a six-pack every weekend.” For low-
income families, particularly Latino immigrants such as Beatriz’ parents, acquiring
information and communication technologies to benefit their children involves the
strategic allotment of sparse resources (Tripp, 2011). Since iDevices are not considered
“durable medical equipment” and thus are not eligible for Medicare coverage (Vance,
2009), less privileged families were required to either turn to the school district or the
market if their child were to use one for augmentative and alternative communication.

24
One family who owned an additional iPad did not report their yearly household income.

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Less privileged parents tended not to have owned an iPad prior to their child
being evaluated for or given one by the school district to use for augmentative and
alternative communication. For example, Moira only ended up with an additional iPad
with Proloquo2Go after the district barred her from taking home the iPad they had
initially provided. Her mother, Vanessa, saw no other option but to ask her abusive ex-
partner, Moira’s father, for financial help to purchase a replacement. “At the time,” said
Vanessa, “I was totally single. Just out of a terrible relationship. Got seriously screwed
by her father. There was no way I could afford an iPad.” When Vanessa and Moira
moved away, Moira’s new school district provided her with an iPad with Proloquo2Go
that she could take anywhere, along with services to support Moira and her mom in
integrating the communication device into daily life. The other iPad remained at home.
“Now it’s good,” said Vanessa, “because now we have two with Proloquo2Go. If the
battery runs out, then we have that one. If she’s sitting next to me, trying to say
something, and I just don’t understand what she’s saying, then I have that iPad.”
How Moira came to have two iPads to potentially use in some capacity at home
was very different than more privileged children. Their parents tended to have owned
one or more iPads prior to the child using one for AAC. The introduction of the iPad into
the home often originated from an Apple device purchased years earlier by a husband in a
white-collar profession. Said Isaac’s mom, Sara, “The first iPhone came out, my
husband went and got an iPhone. When it was the first iPod Touch before that, he got
that.” Cory’s mom, Perri, also highlighted the gendered nature of domestic
communication technology adoption (Wheelock, 1992). “We are a big iPad family
because my husband started with the first one,” she said. “He passes it down when he

73
gets a new one. He uses it in his business and everything.” The planned obsolescence of
Apple devices and a cascade of hand-me-downs resulted in an abundance of iPads in
more privileged homes. Said Perri, “There is one at home that [my son] uses that was my
daughter’s, from my husband to my daughter. Now, my son has the original iPad.”
By the numbers alone, most children in my study had access to multiple iPads at
home. It is however important to keep in mind that how these devices initially entered
the household and were maintained by parents differed across socioeconomic levels.
Only a certain parent reads up on the newest computers on the market, let alone has the
disposable income to supply their children with a steady stream of new devices (Seiter,
2008). Children of parents with white-collar jobs had the advantage of prior domestic
access to an iPad long before the child might have needed another one to communicate.

Fun and Communication
More privileged parents also differed from less privileged parents in their
understanding of the purposes of both devices. More privileged parents, particularly
mothers with a college education or advanced degree, tended to use the emic language of
“fun iPad” and “communication iPad” more so than less privileged parents. They
associated fun iPads with the act of playing or watching media and communication iPads
with the act of talking. Because their children seemed to prefer playing to talking on an
iPad, these parents sought out separate devices as a way to maximize their child’s
potential speech output without denying them the pleasures of playing on an iPad.
For example, Sam’s mom, Donna said of the iPad, “You can use it for a million
other things, which are a million other good things, but Sam can’t sit there with his

74
Proloquo2Go and play games.” When I asked Eric’s mom, Anne, if her son’s school-
issued iPad had any other apps on it besides Proloquo2Go, she replied, “That’s it. We
did that on purpose so that he couldn’t play around with it.” Raul’s mom, Nina,
described her logic for purchasing Raul his own iPad expressly for augmentative and
alternative communication. “You can’t just stick Proloquo2Go on any old iPad,” she
said. “When there’s 10 million apps on there, it’s a ‘fun iPad,’ and then all of a sudden
you expect the child to use it to communicate?” When given the choice, said Nina,
children “want to play the games or do whatever the apps are on there.” More privileged
parents tended to frame the balance between fun and communication on a single iPad as a
zero-sum game in justifying the need for both.
Issac’s mom, Sara, a lawyer turned stay-at-home mother of 4, reported that the
family owned an incredible amount of iPads—11 in total (10 functional and one with a
shattered screen). “I can’t even count the amount of Apple products we have in our
house. They far exceed the family members and we’re six,” said Sara. “It’s sick. It’s a
lot of money in Apple products.” At home, Isaac had a “communication iPad,” “a
back‑up for the communication iPad,” and his own personal “fun one.” When I asked
Sara how the distinction between the fun iPad and the communication iPad came to be,
she said, “You have to have one device that’s solely used for your voice. Anything else
that’s done on there is going to take away from your ability to communicate.”
More privileged parents wanted to keep the communication iPad distinct from the
many media forms subsumed within the device that might distract the child from using
Proloquo2Go. Sam had started using Proloquo2Go on the iPad but actually transitioned a
few months later to the Vantage Lite, a dedicated AAC device. Donna preferred the

75
Vantage Lite to the iPad for AAC because “the only thing my son can do with his
Vantage Lite is talk. With his iPad, he can watch movies, he can play games, he can read
books—he can do a thousand other things and if he doesn’t push on to his Proloquo, then,
tough toenails.” Donna now referred to Sam’s iPad as his “little TV.” Before giving
Luke an iPad with Proloquo2Go, his dad, Rob, made sure to “lock down all the features
that [Luke] would go and play with. Because YouTube was an icon on the original
devices when they came in. There’s no way we could have him turning that thing into a
television. He wouldn’t use it for anything but.” To Rob, YouTube would transform the
iPad into another medium all together, so he took preventative measures to limit Luke’s
media consumption.
Nina though saw children’s use of YouTube as distinctly different from their
experiences with either TV or Proloquo2Go. Said Nina, “I think the distinction for me is
that with the TV, you are a passive participant, right? And with the iPad—as a
communication device—you are an active participant and it provides you a meaningful
way to communicate.” Nina, while characterizing television as passive, positioned the
use of Proloquo2Go on the iPad in opposition to TV as a more active kind of screen-
based activity. Popular rhetoric often pathologizes children’s “screen time,” particularly
TV use, through the language of passivity (Alper, 2014; Newman, 2010). The
introduction of the DVR at the turn of the 21
st
century marked a shift towards framing
children’s TV viewing in terms of individual agency (Mittell, 2010; Newman & Levine,
2012). Nina situated YouTube along a spectrum of active to passive. “I think that there
is a middle of that between an iPad being a communication device and the TV,” she said.
“There is YouTube and then you still feel a bit more active because you are picking what

76
you are interested in.” While still making clear distinctions between communication and
fun, Nina considered the latter category to be multifaceted.
The speech-language pathologists that I shadowed through at-home technology
training sessions with parents also frequently framed iPads as being either for fun or
communication. Speaking the same language as professionals was one way in which
more privileged parents were able to mobilize institutionalized cultural capital in which
less privileged parents were not. In speaking about the parents and children in her
caseload, Rachel told Stephanie’s parents, “For most of our families, they have a
communication iPad and then a fun iPad. Then it’s distinguished.” When Madeline’s
mother, Teresa, told Caren that she had been playing Wiggles videos for Madeline on the
iPad with Proloquo2Go (which they had been temporarily lent by the regional center),
Caren recoiled in slight horror. She quickly responded to Teresa, “My suggestion is to
keep it just for communication if you can. Some of my kids, they can handle both, but
most of my kids, they’ve got to keep it separate. Cause then [Madeline’s] gonna look at
this as a toy or as a reward.” Speech and language professionals, wary of children
perceiving iPads as playthings instead of a means of self-expression, promoted keeping
fun and communication separate.
Some more privileged parents explicitly mentioned picking this language up from
professionals. For example, Donna spent 5 years after her son was born working
amongst assistive technology specialists at a regional center and had also received an
advanced degree in psychology. Said Donna, “When you have an iPad, it can do many
other things. It is not a true AAC device. I cannot say that enough. That was drilled into
my head by Caren and Susan [Caren’s supervisor] and it’s absolutely true.” Besides

77
being a parent to a non-speaking autistic child, Nina was also a special education
professor at a local college. She often advised other families as both a parent and an
expert. Said Nina, “When I talk to parents about Proloquo2Go, I always say they need a
dedicated communication device as an iPad. There shouldn’t be any other apps on there
unless they’re for communication.” Among more privileged parents, the communication
iPad was a means of self-expression, whereas the fun iPad shifted distraction from self-
expression onto another device. Professionals used this same language to refer to the two
iPads, which created a wedge between them and less privileged parents who did not use
such terminology.

Negotiating Fun and Communication On-the-Go
A couple of the less privileged parents tried to make distinctions between fun and
communication iPads, based on school and therapist recommendations, but found them
unrealistic in response to the everyday pressures of parenting multiple children in transit.
For example, River’s parents were divorced, and he and his sister moved back and forth
between their parents’ homes during the week. Mark, River’s dad, said that multiple
iPads were scattered across the two locations. Prior research indicated that families with
divorced parents and young children replicate ICTs between homes, and that children
frequently on the move make use of mobile ICTs (Haddon & Silverstone, 1995). “The
first generation iPad now lives out at Mom’s,” said Mark, “That one’s probably not been
synced in a while.” There was also a “regular iPad” that stayed at home with Mark and
was primarily used by River’s sister “for the games or Netflix.” A constant throughout
River’s changes in location—not only across two homes, but also school—was his iPad

78
Mini, which had “games and stuff on it” besides Proloquo2Go. Said Mark, “We’re trying
to get it through, ‘This is a good tool for you to use.’ It’s hard to compete with games
and stuff like that.” While River’s iPad Mini was “pretty much his speaking device,” it
served multiple purposes out of necessity.
Talen’s mom, Kameelah, described her and her husband’s similar dilemma in
deciding “the balance” between the regular iPad that Talen had used recreationally for
years and his new iPad Mini with Proloquo2Go. Kameelah said, “We put Proloquo on
[the black case-covered iPad Mini] and then his movies are on the other [blue and white
case-covered] iPad. He’s got the two. His black one he would never use for watching
movies.” Talen knew that Proloquo2Go and watching movies belonged on separate
iPads, said Kameelah, thanks to the visual markers of the different colored iPad cases.
She wondered, “Do we keep his movies on the big [iPad]?” If they chose to install
Proloquo on that iPad, “he’s not going to want to go to that. He’s going to want to go to
his movies. Like, even if he did want an apple, he doesn’t want it anymore because,
‘cause now he just wants to watch Ratatouille.” Kameelah thought that Talen preferred
fun to communication, favoring the cooking-themed Disney movie to requesting a snack.
Unlike more privileged parents such as Sara, however, who could afford multiple
fun iPads for each of their children, Kameelah saw the value in keeping the option for
movie watching available on both devices. With little alone time available for her and
husband, having films on each could keep her two young children occupied. “[Talen]
doesn’t realize it,” said Kameelah, “but he could use the [iPad Mini] for movies. He just
doesn’t do Netflix yet. The icon is on that one.” When I asked if the iPad Mini was used
for purposes besides communication, Kameelah let out a deep sigh. “It should not be,”

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she said guiltily. “It should only be used—and my husband will kill me—it should
remain in one spot for him. And 85 percent of the time it does.” Having Netflix on
Talen’s iPad Mini though, for use by his younger sister, enabled a rare opportunity for
Kameelah and her husband to spend time with one another outside of the home:
Let’s say my husband and I are out. This is when she’ll definitely use it. When
we’re out at dinner and we’re like, “OK, we can stretch out the dinner and get
almost like a date…” Where we can ignore them. She takes his black one, and
then he takes the other movie one. And then they’re using both.
Kameelah placed blame on herself (more so than on her husband) for
compromising the integrity of the communication iPad in order to carve out more time
for their relationship. She vowed soon to find a cheap alternative to the iPad Mini so that
her daughter could watch Netflix on her own device instead of using Talen’s. “What can
I get for $150 that will let you watch Netflix or some little movies, but will leave Talen’s
iPad alone?” she wondered aloud. Explaining the difference between a “fun iPad” and a
“communication iPad” to a 3-year-old wasn’t practical either. Kameelah said that her
daughter was “at the age now where it’s hard for her to understand why Talen can have
two iPads, and she can’t have anything.” While Kameelah did try to keep Talen’s two
iPads distinct, this was also harder to do in the community than at home. “In the house,
it’s not a big deal because obviously we have the computer. But when we’re out…” she
said, her sentence trailing off.
For on-the-move situations, Kameelah and Mark found that it was not worth
keeping fun and communication on separate iPads. They agreed in theory with the idea
of keeping Proloquo2Go and all other apps on their own devices, and did so in most

80
situations. The realities though of parenting—having multiple children and one with a
disability, lack of time and money, and divorce, shared custody, and relationship
maintenance with their partners—often make such an ideal nearly impossible to maintain.
Parents, and particularly mothers, often balance their inner subjectivities regarding
mobile media use with broader social and cultural forces (Hjorth & Lim, 2012). When it
comes to owning multiple devices and parenting multiple children, the decisions that
parents make aren’t always rational (Clark, 2013). Even if parents believe that fun and
communication “should” belong on separate iPads, that doesn’t always hold. These
perceived breaches can be a source of guilt, stress, and affective labor for less privileged
parents like Mark and Kameelah.

Entertainment and Education
The iPads with Proloquo2Go used by less privileged children tended to be bought,
owned, and controlled by school. Their parents often viewed the two iPads less in terms
of fun and communication, but rather entertainment and education. For example, when I
asked David if he thought Beatriz used the family-owned iPad Mini differently than the
school-owned iPad with Proloquo2Go, he replied of the former, “she knows that this is
for play and entertainment,” and of the latter, “she knows that the other one is for
educational purposes.” In comparison, when I asked Nina why she called one the fun
iPad, she replied, “Just because it is. That’s what it’s for. We do have some educational
apps on there, but it is for fun.” Said Donna, “My son’s iPad now is strictly a piece of
entertainment for him. I do use it for spelling tests, but that’s about it.” Though Nina
and Donna made some concessions, they believed that any app that wasn’t “for

81
communication”—including those with educational intent—really belonged on the fun
iPad, whereas David grouped school-related apps—including Proloquo2Go—together.
More privileged parents believed that any other work done in the classroom
belonged on a school iPad separate from the communication one with Proloquo2Go.
Sara said that Isaac had a fourth iPad “for school that’s just with a keyboard for typing,
because it’s hard for him to sit and handwrite. His motor planning is really poor, so it’s
just easier for him to type.” The school had offered to provide Isaac with a laptop, but
“we were like, ‘It’s a lot cheaper to just buy another iPad, and have a keyboard,’” said
Sara, to which the school agreed. When I asked her why Isaac needed a separate iPad
from the one with Proloquo2Go, she replied, “Imagine you don’t have a voice. How are
you going to answer a question in class if you’re expected to work on the device you’re
expected to talk with?”
These differing conceptions of the purpose of the two iPads were sometimes a
source of conflict between less privileged parents and professionals. Stephanie’s father,
Nelson, said that his daughter associated the school-owned iPad “with work.” In fact,
“The only time she prefers [the school-owned iPad] is when the batteries run out [on the
family-owned iPad].” In a follow-up training session with Stephanie’s parents, Rachel
was openly frustrated that they had been inconsistent in encouraging Stephanie to use
Proloquo2Go at home on the school-owned iPad. Nelson explained, “We figured they
were using it more at school.” “Don’t think of this as work,” replied Rachel. “This is her
talking to you. It shouldn’t feel like work to her. Maybe the message wasn’t clear to you
all that communication was the main purpose,” she said in a slightly condescending tone.
Stephanie’s mother, Marisa, was confused though about communication being the

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primary purpose of the school-issued iPad. “But at school,” Marisa interjected, “they use
it for video, games.” Nelson, Marisa, and Stephanie’s conception of the school-issued
iPad as intended for education conflicted with Rachel’s conception of the device as
intended for communication.
When the school-issued iPad with Proloquo2Go was used at home, less privileged
parents, especially those without a college degree, appreciated how their child could
maximize the iPad’s educational potential by using other apps on the device. Kevin’s
mom, Rebecca, said that his school-issued iPad with Proloquo2Go also had “his own
little reading books. I think it has a math game in it, and it’s got Dictionary.com which
they use” at school. She found the storybook apps to be “really, really helpful for him
because when he sees the word and hears it at the same time, I think that’s helped his
understanding vocabulary and deciphering the sounds and seeing the words.” To
Rebecca, the school-issued iPad with Proloquo2Go as well as other assorted educational
apps helped her child make clear gains in literacy.
Stephanie’s school-issued iPad came only with Proloquo2Go installed, but her
parents went out of their way to fill it with free educational apps. “They actually gave me
access to it with a password,” Nelson explained, indicating a divergence between Rachel
and the school district’s understandings of the purpose of the school-issued iPad. “We’ve
downloaded all the apps. The only one the school did was this one,” he said, referring to
Proloquo2Go. “The girl that was from the school district said, ‘Use the iPad as much as
you want.’” Marisa told me a story of how one day, when she was updating the software
on the family-owned iPad, Stephanie “start to playing with books [on the school-owned
iPad]. She start to try to read. In her language, believe me. Some words I understand.

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Some words I don’t. But she try to read a book on the iPad,” she said proudly, almost
defiantly. Frequently told by professionals that her autistic child could not read, Marisa
believed that the apps her and her husband had installed on the school-issued iPad
enabled Stephanie to demonstrate abilities that her teachers doubted.
Both more and less privileged parents generally viewed the school-issued iPad
with Proloquo2Go as benefitting their child, and tried their best to encourage children to
use the device in positive ways at home. Less privileged parents, however, valued the
technology for different reasons from more privileged parents. The former group of
parents tried to maximize the use of the school-owned iPad for educational purposes at
home, particularly simple book and game apps that parents could clearly see a benefit
from (e.g. the child’s verbal attempts, vocabulary building). These parents, who
generally had less formal education and technical literacy than more privileged parents,
viewed Proloquo2Go, a complex app requiring highly specialized training, as belonging
to the domain of the school.

Locking In Communication and Locking Out Fun
As illustrated above, parents did not agree uniformly on the intended use of the
school-issued iPad with Proloquo2Go, operating under the impression that it was either
for communication (among more privileged parents) or for education (among less
privileged parents). Parents who owned the child’s iPad with Proloquo2Go (who also
tended to be more privileged) exerted far more agency in determining how or if that
device could be used in particular situations for purposes besides communication. The
next section expands upon this discussion, delving into how power was distributed across

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families and school in the management of children’s iPad use for fun, communication,
and everything else that an Apple device can do.
Parents and district officials directly controlled children’s access to the iPad
through “locking” the machine in two main ways.
25
First, the Fall 2012 release of the
Guided Access setting in Apple’s mobile operating system made it so that a child could
be “locked in” to an app such as Proloquo2Go. Guided Access temporarily disables use
of the home button unless unlocked with a passcode. In his keynote address at the
company’s 2012 Worldwide Developers Conference, Apple exec Scott Forstall
mentioned that the company developed the setting based on the feedback from parents
and clinicians that some autistic children have difficulty focusing on a single app (Apple
Inc., 2012). Second, students and parents could be “locked out” from certain apps on the
school-owned iPad (or the entire device) at home and at school. The power to unlock
additional features in communication technologies designated for people with disabilities
is rarely held by users who might find the features beneficial, but rather controlled by
technology manufacturers and providers (Seelman, 1993).

25
It is beyond the scope of this chapter, but it should be noted that in contemporary Western culture, locks
are frequently evoked as a metaphor for the relationship between the non-speaking and/or autistic
individual and their own body. “Locked-in syndrome” is a condition in which individuals cannot move or
communicate through speech even though they have no loss of cognitive function. Augmentative and
alternative communication devices are frequently described in the press as metaphorical keys that unlock
hidden, inner voices of non-speaking and/or autistic individuals (see Chapter 5). Autism is also frequently
depicted as locking children into their own world, along with the idea that there is a normal child locked
within the autistic child. Autism and the body are figured though this rhetoric as cages. Meanwhile, there
are countless harrowing personal and press reports of autistic children being abused behind literal cages.
Society and the surrounding environment also serve as locks on freedom and human rights, but are rarely
picked or picked apart for further scrutiny.

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Locked In
The beginning of my fieldwork coincided with the introduction of Guided Access,
which Apple explicitly defined as a new “accessibility” feature.
26
There is a valid
argument to be made that Guided Access should be categorized as such. For example,
among users with motor control challenges, Guided Access can prevent an accidental
gesture from taking an individual out of the app they use primarily to communicate.
Guided Access is also explicitly used though to make other apps inaccessible. That is
why Guided Access has been described in the popular press as being for “kids and
kiosks” (Golson, 2012)—specifically, for locking children into apps used for school
testing and for enabling unmanned consumer-facing iPad terminals. In its support
materials, Apple notes that, “Guided Access helps you to stay focused on a task while
using your iPhone, iPad or iPod touch” (Apple Inc., 2012). While this description
emphasizes behavioral self-regulation, Guided Access is not designed to solely benefit
the user. It also affords regulation of the technology with little direct human oversight.
By locking children into Proloquo2Go, Guided Access could temporarily turn an
iPad with any other number of apps into a pseudo-dedicated AAC device that a child
could be left with unattended. Guided Access turns the iPad into a “walled garden,” a
term used to describe children’s technology made “safe” through specific limitations like
internet restrictions (Livingstone & Bovill, 2001). Children can be quite skillful though
at developing creative workarounds to scale the metaphorical wall. For example, when I
asked Nelson how Guided Access was working out for the family, he replied, “I thought
it was an awesome idea, except [Stephanie] figured it out!” Stephanie has overheard her
parents and therapists talking about the passcode, remembered it, and then used it to

26
https://www.apple.com/ios/accessibility-tips/

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unlock Guided Access. “We had to tell the people to change the passwords because in
school her therapists were like, ‘Don’t say anything in front of her…’” said Nelson.
Caren, describing Guided Access to Daisy, said that once enabled, the iPad “truly
becomes dedicated.” There was a particular moral judgment to some professionals’
views of Guided Access. Rachel said it was helpful because there were some “kids who
constantly get on YouTube” and “try to do everything on here but communicate to us.”
Rachel theorized that, “[Apple] did Guided Access because people were saying, ‘This is
driving us crazy, watching YouTube all day.’” One school district assistive technology
specialist reported that in response to the introduction of Guided Access, she’d “seen
some teachers go, ‘Oh good, because we don’t want them in anything but communication
on this device.’” While YouTube turns the iPad with Proloquo2Go into a TV (per Rob),
Guided Access turns it into a dedicated AAC device.
That same school district assistive technology specialist also had serious concerns
about abuses of Guided Access. She had seen it be helpful “in some cases where a
student is resistant to doing anything on the iPad except for going to YouTube or playing
a game” and “for those kids that go into the settings and mess things up and they don’t
know what they did.” She had reservations though about the adult control afforded by
Guided Access potentially backfiring. She said, “I hesitate to just lock a kid in an app
and not let them get anywhere else in that iPad.” She felt that such a thing would be
highly frustrating, leading some students to “become aggressive if you don’t let them out
of the communication app and into the other thing.” Guided Access yields more power to
the person doing the guiding than the one being guided.

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There were clear differences among parents in their awareness and knowledge of
the Guided Access setting. More privileged parents were more likely to have researched
how to use Guided Access. When I asked Danny’s parents, Alice and Peter, how they
had first heard about the feature, Peter said, “When the new iOS was coming out, I did
my research on available features of the iOS before I updated.” Less privileged parents
generally did not learn how to use it on their own. At one home visit, Rachel tried to
enable Guided Access on Stephanie’s school-owned iPad, but it required a passcode and
she wondered if the school had already set one. Nelson speculated that he might have
gotten an email about it from the school’s assistive technology specialist. Said Nelson to
his wife, “Remember we got that email and thought, ‘I wonder what that does?’” The
email had gone untouched since that time.
More privileged parents who owned an iPad with Proloquo2Go sometimes
strategically used Guided Access as a way to promote their child’s communication,
specifically communicating their desire to use another app. Said Alice, “We’ll just triple
click, and that actually starts Guided Access. That means you can’t get out of this now.
We can set it up so now, if you want to play an app, you have to request it.” Danny could
then request his spare iPad to play with by pressing an “iPad” button on his Proloquo2Go.
One of the AT specialists I interviewed also suggested this strategy. She said, “I’ve used
that as communication then. Let’s program in your AAC app for you to request to get out
of this and access to the other thing you want. Using it that way, you’ve got to find what
motivates them.” In this manner, communication was rewarded with fun by channeling
requests to play with other apps through the locked-in Proloquo2Go.

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Locked Out
Families who did not own the iPad with Proloquo2Go installed were regulated by
the school in how their child used the device for purposes other than communication.
Thomas’ mom, Daisy, did not agree with the school’s presumption that her son would
always favor playing around over using Proloquo2Go. She had initially thought that
Thomas could not handle using the iPad for communication with other apps installed.
“In the beginning,” she said, “I don’t think it would have been a good idea because then
he would just skip the communication […] and go to the games.” Eventually though, her
son’s desire to communicate with Proloquo2Go grew, and could override his interest in
playing with other apps. “He knows that if he didn’t use it,” said Daisy, “we wouldn’t
give him anything that he requests and asks for, or listen to his phrases, comments, what
he feels if he doesn’t use this.” While Daisy though may have thought that her son could
manage toggling between Proloquo2Go and other apps, Thomas’ school district had gone
ahead and preemptively locked him out of using the school-owned iPad in any capacity
other than for communication.
The fact that the school “took out a lot of stuff,” including the web browser,
angered Daisy for three reasons. First, she thought that it was not reflective of how iPads
are actually used by the general population. Said Daisy, “In the real world, it would
make sense if it was all on just one device. That, okay, ‘If I wanna communicate with
you, ta-da.’ And, then, ‘Oh, I feel like playing a game,’ then it’s gonna be the same.”
The school had instead forced the fun/communication binary on Daisy: “‘Oh, lemme do
this [on one iPad] for the game,’ and then ‘Oh, lemme do this [on another iPad] for the
communication.’” “Real world” application of skills was important to Daisy. She

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employed an afterschool aide to take Thomas on trips to locations like the grocery store
and post office to foster community integration and participation. To Daisy, having a
communication iPad completely separate from another iPad was not practical in the
world outside of Thomas’ classroom.
Second, Daisy felt that the school was not allowing her son to completely take
advantage of the technology’s capabilities. She explained, “If you’re non-verbal, you
would use this to communicate, and then ‘Oh, now it’s school. Let me use this to write
my notes.’ Or ‘use this for my school for research.’ Or, ‘Oh, let me check my email.’”
Instead of just using the iPad for one purpose as a student, “You would want it to be all-
in-one,” said Daisy. She was frustrated that “the school is limiting it to, ‘Nope. This is a
communication device. That’s it.’” The iPad could be that digital Swiss army knife for
Thomas, but its full potential was being wasted in Daisy’s eyes. Some professionals
shared this view. One noted, “As an AT specialist, I feel that we should get as much out
of [the iPad] as we can and communication can be a great piece of it, but it doesn’t have
to be the only piece.” Those pieces included “interaction or communication or learning
their ABCs or whatever it is. If their eyes light up when they’re doing it, then use it.”
Lastly, Daisy viewed the district’s control over the iPad as symbolic of an
imbalance of power. “I don’t know how the other school districts are,” Daisy reasoned.
“I shouldn’t complain too much. Just the fact that they gave me an iPad, and the fact that
I’m able to put stuff [in Proloquo2Go] for home stuff and that it’s just his and that we get
to take it home.” Daisy was resigned to just being grateful for what the school district
had given her son, especially considering their assessment and delivery process for an
augmentative and alternative communication device had been drawn out over years.

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Daisy was right: things could be worse. While Guided Access could lock a child
into an app, the school and its technological infrastructure could lock them out
completely. One district AAC specialist said that, “if a family by mistake plugs the
device into their computer, it will lock the iPad. You have to bring it to the ‘mothership’
[the nickname for a hub in a technology management building in the school district] to
get it unlocked or to do any of the software updates.” To prevent this, AAC specialists in
the district would “put tape all over” for parents that said, “‘Do not plug in please.’
Whatever you do, don’t install software updates.” The purpose of the “mothership,” as
nefarious as that name sounds, was not to arbitrarily control the child’s iPad, but to
protect the school’s financial investment. When I asked the AAC specialist about the
logic behind the self-disabling iPad, she explained that, “[parents] could potentially
delete the app and then we would lose the license for the app.”
While the iPad is often framed in the popular press as an emancipatory tool for
non-speaking individuals (Haller et al., in press), it is important to understand the ways in
which children and their school-owned iPads are bound to outside interests. While iPad
“locks” are partly created by technology, they are also forged through the political
economies of educational technology (Apple, 1986; Buckingham, 2007; Selwyn & Facer,
2013) and assistive technology (Thornton, 1993).

Unlocked
Prior to the iPad, it was not as if parents needed to distinguish between the “fun
Dynavox” and the “communication Dynavox.” A Dynavox has one primary purpose—to
be an augmentative and alternative communication device—and so it is not a technology

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that families would otherwise have purchased. At the same time, even a “dedicated”
AAC device can potentially have a plethora of secondary functions. For example, Donna
raved about the features of the Vantage Lite, saying, “It’s a bunch of other things too.
It’s a telephone; you could call people on it. You can use it for a remote control for the
TV. […] It’s a pretty advanced device.” “Dedicated” AAC device then is a bit of a
misnomer, as these technologies are also used to store, circulate, and manage media.
A key difference between a multi-purpose iPad and a multi-purpose Dynavox is
that with a Dynavox, those secondary functions are hidden unless otherwise unlocked—
which comes at a price. “When insurance pays for [a Dynavox],” said one AAC school
district specialist, “it comes as a locked device. It will come with only access to the
communication component.” For an extra fee, companies will unlock these features.
“It’s about $200,” the specialist said, “If the family pays out of pocket, the company will
send them a code or a USB drive and that will unlock the other features of the system.”
Insurance companies lock users who cannot afford to pay into a particular definition of
what it means to use a mobile device to communicate, and refuse to cover iPads as AAC
devices. “Communication is email, communication is text messaging, it’s FaceTime, it’s
all these other features that are available, but we have a very narrow definition of it,” the
AAC specialist said. “I think it’s evolving, but it’s very slowly evolving.”

Learning to Speak the “Language”
The extent to which communication technologies might benefit non-speaking
individuals depends on their power to define their own communication needs. This
negotiation over the terms of communication has a long history. In her analysis of

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telephone-based home communication alarm systems for individuals with disabilities,
Thornton (1993) found that the manufacturers and providers of these technologies
imposed rules about appropriate use. While users were expected to only use the service
for emergency response and not to “abuse” the system, individuals desired to use it for
daily living in order to prevent emergencies from ever occurring (e.g. preventing falls by
requesting assistance in getting out of bed). Paternalistic approaches to providing
technology for non-speaking children limit the potential for young people and their
families to determine how the iPad might best suit their needs.
Whether or not children’s iPads with the Proloquo2Go app should be multi-
purpose—for fun and communication or entertainment and education—is a complicated
question. The answer should center on the needs, preferences, and abilities of the child
using the iPad. Some children may benefit from exclusively having access only to
Proloquo2Go, and other children may be very capable of toggling between apps. My
concern is that the debate about “proper” iPad use distracts us from how such decisions
are made, on what grounds they are based, and the unequal distribution of this decision-
making power among more and less privileged parents. It is disconcerting that the use of
the iPad as a communicative tool is more likely to be controlled by school districts
among less privileged children. Districts have other priorities besides children’s
individual freedoms, such as protecting large investments in technology and
technological infrastructure.
Research on school programs that allow children to take school-owned mobile
computers home has been very limited. The scholarship that exists suggests that sending
a computer home is beneficial because it expands access and increases students’ sense of

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ownership and personalization of the computer (Vahey & Crawford, 2002; Warschauer,
2006). This study suggests that a school-owned computer going home is not beneficial in
and of itself. The extent to which children could utilize the school-owned iPad for
learning at home, outside of Proloquo2Go, was highly variable. Speech-language
professionals chastised Stephanie’s parents for mining the learning opportunities of the
iPad. Daisy and David felt let down and confused by their experiences with the district,
which placed limits carte blanche on how (or if) their children could use the school-
owned technology at home. A number of digital media and learning researchers have
recently focused their work on “connected learning” (Ito et al., 2013), or the potential for
networked communication and new media to bridge children’s learning opportunities in
and outside of school. Daisy, David, Nelson, and Marisa’s stories illustrate how these
connections are delicate. In their own homes, children were always tethered to the
school’s management of the software and the operating system, for better and for worse.
In using the terminology of the “fun iPad” and “communication iPad,” more
privileged parents demonstrated a particular habitus, or way of making meaning in daily
life (Bourdieu, 1977, 1986). The idea that an iPad should only be used for
communication is learned, based upon some knowledge of assistive technology and
augmentative and alternative communication. This hinges on parents’ language fluency,
educational background, technical literacy, and free time. There is nothing inherently
socially or culturally stratifying about two groups of parents viewing two iPads
differently. Habitus occurs though in a field, or social and cultural arenas of human
action and interaction (Bourdieu, 1972). In this study, privileged parents were
advantaged in their dealings with clinicians, who also tended to use the language of fun

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and communication and looked more favorably upon parents who viewed the iPad
similarly. Parent participation in education requires the mobilization of specialized kinds
of cultural and social capital (Lareau, 2000; Lee & Bowen, 2006). Speaking the same
language as experts further advantaged parents from dominant groups, who generally
encounter less structural barriers to participation in their children’s education.

Conclusion
While both more and less privileged parents mostly understood the two iPads as
having distinct purposes, they distinguished them differently. More privileged parents
framed the duo of iPads in terms of fun and communication, while less privileged parents
understood them as being either for entertainment or education. While both the “fun
iPad” and the “communication iPad” are materially identical communication
technologies, parents who employed the euphemisms only considered the latter to truly
be a technology for communication. In other words, fun iPads and communication iPads
are symbolically different communication technologies for parents who use this
language. Less privileged parents did not care less about their child benefitting from the
iPad with Proloquo2Go—they cared differently.
More privileged parents, like Sara, had many more iPads, and so could dedicate
one to be the “communication iPad,” whereas less privileged parents, like Kameelah,
owned far fewer, and at times needed the device to do double duty. They did not have
the luxury of creating a neat binary. This difference between more and less privileged
parents highlights the role of objectified cultural capital. There are class biases inherent
in professionals recommending that the child’s iPad should only be used for

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augmentative and alternative communication when only the most privileged parents have
multiple iPads for each child.
Children’s abilities to use the iPad for various purposes were bound up with
various power structures. The political economy of assistive technologies and the
political economy of educational technologies both serve here to potentially increase the
gap between what children need from technology and what they receive. While
insurance companies treat “assistive technologies” and “communication technologies” as
separate (the former “durable medical equipment” and the latter not), parents’ social
construction of the “fun iPad” and the “communication iPad” illustrate how assistive and
communication technologies co-constitute one another. In the next chapter, I explore
alternative ways, outside of Proloquo2Go, in which parents understood their children’s
recreational iPad use as inherently communicative.

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CHAPTER FOUR
AUGMENTING COMMUNICATION
WITH NEW MEDIA AND POPULAR CULTURE
Technology’s saved [Danny] from a diagnosis of autism and retardation because we were
in with a doctor who was about to diagnose him as retarded and autistic. He was being a
pain in the neck, and I handed him my iPod, and he opened up the iPod, moved two
screens over, opened up videos, looked at them, and opened the video he wanted, got
bored, and went and played a game. You could see the doctor just sit there and go,
“…Not retarded.”
—Peter, father of Danny
27

In industrialized nations, some form of mobile media almost always accompanies
caregivers and children during the course of daily activities, be it a phone, tablet
computer, gaming device, or music player. Trips to the grocery store, visits with
relatives, and appointments at the doctor’s office—all expand the social context of
children’s engagement with media and technology (Horst, Herr-Stephenson, & Robinson,
2009). While young people may be physically co-located with their family members as
they engage with mobile media, the screen (as a shorthand for entertainment technology)
is often characterized as intruding upon the family unit (e.g. media as “babysitter”) or
controlling children’s minds (e.g. media as “addictive”) (Mittell, 2000).
The above quote from Peter illuminates another perspective on the relationship
between children’s ubiquitous media use, psychological presence, and social connection.

27
It should be noted that the terms “mental retardation” and “mentally retarded” no longer appear in US
health, education and labor policy, per Rosa’s Law, which President Obama signed into federal law on
October 5, 2010. Those terms do not appear in this dissertation outside of direct quotes.

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In my interview with Peter, he bluntly expressed the belief that Danny’s iPod navigation
in his pediatrician’s exam room quickly relayed a degree of intelligence to the doctor that
Danny ostensibly could not have performed through talking and did not already measure
up to using formal medical and psychological evaluations. Based on his cultural
knowledge about Apple technology, about techniques for operating touchscreen devices,
and about rituals of media browsing, the pediatrician reportedly used his observation of
Danny’s intentional and purposeful iPod use to appraise the boy’s level of cognition.
In the previous chapter, I detailed how more privileged parents and speech-
language professionals tended to treat “fun” uses of the iPad as separate from uses of the
iPad for “communication.” While an iPad has the capacity to be a technology for
information and communication in a broad sense, these parents and professionals
preferred that non-speaking children dedicate at least one iPad to the production of
synthetic speech, reserving the use of all other apps for a separate iPad. A number of
both more and less privileged parents though complicated this fun/communication binary.
I found many parents, like Peter, who considered their non-speaking child’s recreational
media use to “say something” important about them. They understood their children’s
broader recreational engagement with new media—besides the Proloquo2Go
augmentative and alternative communication (AAC) app—as inherently communicative.
This chapter examines how parents interpreted their non-speaking or minimally-
speaking child’s engagement with new media and popular culture in various settings and
under different circumstances as an expression of the very skills in which the dominant
able-bodied culture often presumes them to be deficient. I begin by reviewing two areas
of research that help situate these findings. First, drawing on disability studies, I explain

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challenges to the deficit model of disability, which characterizes non-speaking
individuals as lacking in communication skills (Linton, 1998; Siebers, 2008). Second, in
light of work in language and literacy studies, I detail tensions surrounding a deficit
model of children’s recreational media use, in which popular culture is defined by its lack
of value for children (Desmond, 1997; Robinson & Turnbull, 2005; Tyner, 1998). I next
outline three areas of aptitude—socioemotional, cognitive, and verbal skills—that parents
discussed emerging through children’s media use. In light of dominant perceptions of
both disability and children’s popular culture as deficient, I discuss the potential for more
enabling asset-oriented models. This research, I conclude, not only has implications for
youth with disabilities and their families, but also for the normative study of children and
media writ large.

Communicating Deficiency
There are various competing logics for understanding disability as a concept (see
Chapter 1). The dominant ideology is the deficit model, also known as the medical or
individualist model (Valencia, 2010). The deficit model of disability emphasizes what
people with disabilities are thought to lack, and this absence becomes their defining trait
(Linton, 1998). The goal of those operating under the logic of deficit is to repair the
broken disabled body, make whole the incomplete disabled body, or normalize the
abnormal disabled body (Siebers, 2008). In the deficit model, disability diminishes an
individual’s life; a life without disability is set up as the standard against which
individuals with disabilities are compared.

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For example, the language of deficit dominates autism discourse (Kapp, Gillespie-
Lynch, Sherman, & Hutman, 2013; Robertson, 2010). This rhetoric tends to characterize
non-speaking autistic individuals as lacking in socioemotional, cognitive, and verbal
skills. Leading medical and scientific experts maintains that autistic people are unable to
employ a “theory of mind,” or comprehend the feelings and intentions of others (Baron-
Cohen, Leslie, & Frith, 1985). In the 1980s, psychologist Simon Baron-Cohen (1997)
advanced the idea that autistic individuals are “mindblind,” or suffer from
“mindblindness.” This condition allegedly causes autistic people to seek social isolation.
The inability to talk or to respond quickly to questions is often equated with intellectual
disability (Biklen, 2005), as evidenced by Danny’s near misdiagnosis. Clinicians label
autistics who can speak as “high-functioning” and those unable to produce embodied oral
speech as “low-functioning.”
Such a conception of “low-functioning” autism though is value-laden.
Mindblindness discounts the lived experience of autistic people and privileges scientists
with the rhetorical power to define autism (Dinishak & Akhtar, 2013; Smukler, 2005).
Write Duffy and Dorner (2011, p. 214), “The theory is, in effect, ‘mindblind’ with regard
to autistic perspectives.” Behavior that Western culture tends to characterize as impolite
or anti-social, such as not speaking or making eye contact, an autistic person may view as
part and parcel of being true to one’s self-identity (Biklen, 2005). The inability for others
to relate to and communicate with non-speaking autistics is rarely itself viewed as a
deficiency in the dominant culture.
Media increasingly allow non-speaking individuals to provide first-person
accounts of how they experience the world (Ginsburg, 2012; Haller, 2010a). There is

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also a growing genre of books in English written or co-written by non-speaking autistic
youth and young adults: The Reason I Jump (2013) by Naoki Higashida, Ido in
Autismland (2012) by Ido Kedar, and Carly’s Voice (2012) by Arthur Fleischmann (with
a chapter written by his non-speaking autistic daughter, Carly Fleischmann). Their work
illustrates the ways in which the social and emotional incapacities of non-speaking
individuals are not an objective truth, but shaped by society and culture. These memoirs
have largely been limited though to representing white, middle class U.S. childhoods, and
should not be universalized. A more diverse range of first-hand accounts by non-
speaking youth and their families would further open up possibilities for disability to be
understood as a life enhancement instead of a diminishment.

Deficit Model of Children and Popular Culture
Adults often characterize children’s media use in terms of a different sort of
deficit model (Desmond, 1997; Robinson & Turnbull, 2005; Tyner, 1998). Early
childhood and elementary school educators tend to see popular culture as distracting
children from worthwhile learning and displacing time spent with activities more aligned
with a middle class milieu, such as book reading, practicing music, and going to
museums (Dyson, 1997; Robinson & Mackey, 2013; Seiter, 1999). Mass media (e.g.
comics, television, video games) are thought to lack wholesome nourishment;
consumption should be curbed, just as too much junk food causes young children to be
vitamin deficient (Newman, 2010).
This deficit view is predicated on the assumption that children are lacking in their
capacity to comprehend and resist commercial messages, compared to the adults they

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have yet to become (Seiter, 1995), also known as a model of oversocialization (Wrong,
1961). Appraisals of children’s popular media are grounded in adult critiques of mass-
produced culture (Benjamin, 1968) and condescension towards “the masses” for being
susceptible to the illusions of the culture industry (Adorno & Horkheimer, 2002).
Cultural studies scholars argue that this underestimates the agency of audiences (Fiske,
1992; Jenkins, Ford, & Green, 2013; Radway, 1984). Anthropologists have long noted
the ways in which the material of popular culture becomes a resource in our daily lives
(Appadurai, 1986; de Certeau, 1984; Ginsburg, Abu-Lughod, & Larkin, 2002). Media
texts provide a shared set of meanings and experiences for children and their social
partners to call upon in constructing and maintaining a sense of reality (Buckingham,
2011; Chin, 2001; Dyson, 1997; Marsh, 2005).
While consumerism is largely figured as corrupting traditional childhoods (Kline,
1993), children have for centuries appropriated mass culture into their games and play
(Opie & Opie, 1969). This is not to say that children’s media products are completely
innocuous. Normativity and deviance are recurring tensions in children’s culture; what it
means to play “properly” is frequently universalized without regard for social
constructions of gender, class, race, and ability (Giroux, 1994). Children’s mass media
texts also reproduce hierarchical relationships that children do not necessarily challenge
(Wohlwend, 2009). Children’s production, consumption, and circulation of media are
shaped by adult interests and reflect complex dynamics between agency and
subordination.
Media, outside of purely “educational” content, can be particularly meaningful for
youth with disabilities and their families, who may be socially excluded in other areas of

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their lives (Pitaru, 2008). Popular culture provides contexts for families to stay
connected at home and at a distance (Clark, 2013; Seiter, 1995). Families of children
with disabilities can enjoy and benefit from shared consumption and creative
appropriation of media content (Suskind, 2014). For example, in her ethnographic study
of African-American children with significant disabilities and chronic illnesses,
Mattingly (2003, 2006) found that the narratives and characters in Disney films provided
rich material for children and their families to socially construct personal identities as a
form of resistance against stigmatizing labels. More anecdotally, parenting blogger Lisa
Quinones-Fontanez (2014) of Atypical Familia notes that her son’s love of the
“unboxing” genre of YouTube videos posted by the “DC Toys Collector” account
28
has
taught her son “how to describe things—which is MAJOR for a kid with autism.”
Instead of viewing popular culture as a deficit then, new literacies researchers
increasingly understand media as a potential asset to children’s development of
communication skills (Lankshear & Knobel, 2011). Robinson and Turnbull (2005, p. 68)
write that “what might in deficit models be rated as either irrelevant or damaging (the
Disney film, the computer games),” in an asset model is “drawn on in an equally wide
range of communicative practices and events.” Barton (1994) explains that these
communicative practices and events consist of the array of activities through which
children learn to make sense of the texts in their environments. Among non-speaking
youth, the application of this asset model requires widening the range of what activities
and behaviors are considered to be communicative, as well as a critical examination of
power differentials in determining communication deficiencies.

28
https://www.youtube.com/user/DisneyCollectorBR

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Communicating Through Media Use
The following section details how the aforementioned angles on deficit—that
disability is defined by shortcomings, and that popular culture causes child deficiencies—
are challenged by the ways in which parents spoke of the communicative value of their
non-speaking child’s recreational engagement with media. For non-speaking autistic
youth, characterized as significantly lacking empathy, this meant communicating social
and emotional skills through media use. For non-speaking youth with a diagnosed
intellectual disability or suspected by doctors to have an intellectual disability, this meant
communicating their cognitive abilities through their interactions with new media. For
non-speaking youth, generally characterized as “non-verbal,” this meant communicating
their interest in print culture.

Social and Emotional
A number of parents explicitly described their non-speaking autistic children as
social and full of complex emotions. Media play a key role in parents’ stories as tools for
enabling their children’s expressions of empathy.
Moira. When Moira (10-years-old, white, autistic) was very young, her great-
grandmother, Gigi, would often take care of her while her single mother, Vanessa, went
to school or work part-time. Vanessa said that Moira “had a very close relationship with
her great‑grandmother,” who had passed away three years ago. Vanessa recalled how
Moira and her great-grandmother would regularly “sit on Gigi’s recliner, and they would
watch Judge Mathis, Judge Judy, People’s Court.” When I asked Vanessa about what
YouTube videos Moira currently liked to watch, Vanessa said that clips of those

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particular reality court shows were now Moira’s favorites. Moreover, she “will also
watch the commercials that they show during this time. Like ‘Injury Attorney, Larry H.
Parker,’” said Vanessa. “I joke with Moira that, ‘You’re a lonely 50‑year‑old housewife,
Moira, watching your court shows, and your attorney commercials.’”
While cultural critics might deem such viewing as age inappropriate and
lowbrow, seeing as daytime programming and video practices are highly classed and
gendered (Gray, 1992; Seiter, Borchers, Kreutzner, & Warth, 1989), Vanessa indicated
that these shows provided Moira with a valuable and pleasurable experience. She
believed that while Moira was unable to speak about her connection with her
grandmother or her potential grief over Gigi’s death, she expressed their emotional link
though ritualistic YouTube viewing. Said Vanessa, “It’s just really amazing that she
remembers that, those commercials. She was a baby and a toddler. We don’t watch TV.
It’s really endearing that she does that, because it’s totally tied to her great‑grandmother.”
Vanessa had ruled out the possibility that Moira had encountered court shows on TV at
an older age; the family did not have cable and only used the TV set to watch DVDs.
Vanessa intuitively thought that by watching the TV shows and commercials that Moira
and Gigi shared together, Moira was recreating comforting memories.
Stephanie. Stephanie’s mother, Marisa, was accustomed to hearing from
professionals that her daughter (10-years-old, Latina, autistic) lacked empathy. Sitting at
the family’s kitchen table, Marisa said, “sometimes I talk with [Stephanie] or try to
understand what she say. And I talk. ‘Yes, mommy. No, mommy.’ It’s like trying to
have a conversation with her.” When she told one of Stephanie’s therapists about these
mother-daughter exchanges, Marisa said that she was treated condescendingly and even

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accused of lying: “She told me, ‘Ah, Mrs. Hernandez, I love how you try to understand
your daughter, and maybe I don’t understand, but you made that up.’” Marisa sighed
heavily during the interview and continued, “Well, I try to have a conversation with
[Stephanie], and try to talk, don’t ignore her. […] Stephanie give you opportunities to
understand her and see in her world. It’s up to you if you took that opportunity.”
Marisa felt that therapists tended to dehumanize her child and others like her.
“They think they don’t have feelings, they don’t able to do things for you. That they are
a separate person, like you and me, because they cannot express,” said Marisa.
Professionals lost sight of the “human part,” Marisa explained. “Sometimes, I feel is
only, one more case, one more child. They don’t really want to help the kids. They’re
just, one more.” The situation Marisa described was unfortunate for all. The
professionals who encountered Stephanie were unwilling to share in her world,
Stephanie’s agency was denied, and her mother was belittled.
Stephanie’s world, Marisa explained, was deeply emotional despite not being able
to express those feelings in spoken words. “For us,” said Marisa, “it’s a little bit bitter to
understand how she feels. Sometimes she cries.” Stephanie’s engagement with media,
both alone and with others, provided “a little window” onto Stephanie’s emotional states.
Said Marisa, “We start to notice about music. Sometime when she feels sad, she put sad
music and she cry. When she feel happy, is like the way she say, ‘I feel happy.’” While
Stephanie’s therapists privileged oral speech, Marisa felt that Stephanie voiced her
emotions through the songs she chose to play.

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Marisa also experienced first hand Stephanie’s profound capacity for empathy.
About an hour and a half into our two hour-long interview, Marisa told me the following
story:
Sometimes I don’t feel good. Sometimes I feel very tired or frustrated. But many
times I start playing with her. Stephanie have very nice heart. The other day, I
don’t feel good. I’m in remission. I have cancer, so sometimes I feel tired. The
other day, I don’t feel good, and I sit down on the sofa. Every time Stephanie
look me like that, she sit down with me, and she put a blanket on top of me. We
watched TV until Nelson come home. So that part is, “I’m going to take care of
you Mom, because you take care of me.”
My heart ached when Marisa first told me this story, and her account does not feel any
less raw each time I read it. Marisa’s cancer had not come up earlier in the interview, and
only after she spoke of her cancer, in passing, did I notice the port scars from
chemotherapy beneath her collarbone, framed by the zippered edges of her gray hooded
sweatshirt.
The simple moralistic framing of media consumption as passive, and therefore
bad, does not apply here. The television provided needed physical passivity for Marisa,
an escape from draining chemotherapy treatments. Directly gazing at her mother, placing
a blanket atop her, and sitting down with her to watch television—all were active
expressions of compassion by Stephanie. To Marisa, Stephanie’s actions communicated
both her daughter’s acknowledgement of Marisa’s own caretaking role and Marisa’s need
to be cared for. Said Marisa, “You think she don’t understand you, but she do. She do.”

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In spite of naysayers, Marisa and Vanessa believed that their autistic daughters displayed
vast emotional intelligence, and their intimate social experiences with media were proof.

Cognitive
Parents of non-speaking children (including those with and without a diagnosis of
autism) interpreted their child’s mastery of media settings and controls on the iPad as
communicating an aspect of their intelligence discounted by others. Gesture plays a
significant role in communication and development (Vygotsky, 1978), with Kendon
(2004) likening physical gestures (not only sign language) to utterances made visible. At
the beginning of the chapter, I quoted Danny’s dad, Peter, who described how witnessing
Danny’s iPod navigation in the exam room singlehandedly convinced Danny’s doctor at
the last minute not to diagnose him as “retarded.” A number of parents similarly
explained how technology enabled their children to show that they were more intelligent
than developmental experts gave them credit for.
Beatriz. According to her father, David, the manner in which Beatriz (10-years-
old, Latina, cerebral palsy and epilepsy) played with computer games at home provided
key insights into her memory and comprehension. “There are very challenging games
that she plays and shows how smart she is,” said David. He gave one example of a game
in which the player is presented with a grid of four items: three of the items share some
quality in common, and the player must identify the one that does not belong. Beatriz
easily mastered the game, much to David’s surprise. He said, “I just look at her, from far,
and try to pay attention to what she’s doing, to see if she’s doing it by chance. But she’s
doing it constantly. That shows me that she really knows what she’s doing.”

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David also detailed how, through online games, Beatriz displayed a keen ability to
understand musical patterns. She frequently played games on the children’s educational
website Starfall.com, and would hum along with the accompanying music. David said
that Beatriz had the ability to recognize the rhythm, start and end the phrasing at the right
time, and anticipate the conclusion of the music. “That tells me that she knows the song.
She cannot sing it, but she knows it,” he said. The inability to produce embodied oral
speech did not preclude Beatriz from having an innate sense of what singing was like.
In addition to games, David also interpreted Beatriz’ YouTube use as evidence of
her cognitive skills. As with the computer games, David initially thought that Beatriz’
interactions with YouTube were not intentional. Said David, “At first, we thought that
she was just watching items because that’s what her finger picked. But then we noticed
that she’s constantly choosing the same items, so that tell us that she knows what she
wants.” Beatriz not only could purposefully choose videos, but workaround YouTube’s
automated choices:
She knows there the History button is, and after she’s been redirected several
times to something that she doesn’t like anymore…YouTube, little by little, is
redirecting you to something else. When she goes to that extent, then she presses
the History button, and then—I don’t know how—but she finds her video. Right?
I don’t know how she does it. I don’t know if it’s the length of the letters, the
phrase, the length of the title, I don’t know, but she finds it.
David gained a new appreciation for his daughter’s cognitive abilities through her use of
online games and video sites. He interpreted Beatriz’ intelligence not through her words,

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but partly through observing her repeated patterns of action and interaction with new
media.
Talen. Towards the end of my interview with Kameelah, her son Talen (6-years-
old, mixed race, autistic) stripped off his clothes and peed in the driveway of their
apartment complex. One moment, he had been jumping on a trampoline under the
supervision of his applied behavior therapist, Brooke, and the next moment, said Brooke,
“I looked up, and he’s over there, pants down, all of a sudden.” After the incident,
Brooke brought Talen inside to wash his hands and put his clothes back on. He spent the
remainder of the interview sitting and watching Toy Story on his iPad within eyeshot and
earshot of Kameelah and I.
While Kameelah filled out the family information sheet that I had brought along, I
could see and hear Talen repeatedly rewinding the movie. Kameelah explained that he
frequently manipulated the iPad interface in this manner. “I didn’t realize you could
rewind on an iPad […] so I watched him do it,” said Kameelah. “He watches it and
rewinds sometimes, and lets it go, watches it and rewinds, lets it go. He goes to different
shows and has his parts. He’ll fast forward to the right scene he wants. Rewind to the
right part.”
I told Kameelah how I had observed a number of autistic children engaging in the
same sort of activity, and that research seemed to confirm this behavioral pattern (Nally,
Houlton, & Ralph, 2000; Shane & Albert, 2008). I asked her, “Do you have an idea why
he likes to do that?” Kameelah suspected that Talen manipulated the video because it
provided him with sensory pleasure. “A couple of things I’ve watched on Toy Story, he
likes what they’re doing, the motion of what they’re doing. Other parts […] he likes the

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sound of it. […] I imagine it’s a sensory something.” She said that Talen also liked to
hold the iPad up and bring the speaker close to his ear. “I don’t know if it’s you feel you
want to hold it because you want to feel it,” she said, “because he also likes things really
loud,” said Kameelah.
She emphasized how this navigation was purposeful and reflected Talen’s
cognitive abilities. “He’s not following it for the storyline. He’s getting something else
out of it,” she said, “Somewhere in there, he’s hearing someone […] I think for us seeing
that helped us know that there’s more going on in there.” In fact, when Talen’s former
doctor suggested that he might have an intellectual disability, it was Talen’s ability to
navigate the video interface with precision that, for Kameelah, cast doubt on the doctor’s
implication:
His developmental pediatrician—who we left—she said to me, “At some point in
time he should be tested for an intellectual disability,” or whatever. I get that
obviously something is skewed to the left with little man. But I don’t…because
of different things that I see him doing, I don’t know that I would say that he’s
intellectually disabled or whatever that might mean. […] I figure he just can’t do
things in the traditional way of doing them, but there’s got to be something else
there. Watching him manipulate that has made me like, “Huh. Something about
that that makes sense for you.”
Countless times, experts told Beatriz and Talen’s parents that their children were not
cognitively “there.” Beatriz and Talen likely heard those damaging words too. The
parents were a bit puzzled by their children’s ability to learn new technologies, but also

111
proud. Their dexterity with new media interfaces communicated an unspoken but ever-
present level of intelligence.

Verbal
There were a number of parents who emphasized that though their child did not
speak, they had a deep interest in words. While the term “non-verbal” is used clinically
to describe children with significant difficulty producing embodied oral speech, parents
described their children as highly verbal in the sense that they enjoyed reading and
playing with texts across multiple media.
Cory. When I first sat down for an interview with Cory’s mom, Perri, I began by
asking her to tell me the “origin story” of how Cory (4-years-old, white, multiple
disabilities) came to use Proloquo2Go on the iPad. Far longer than other interviewee,
Perri talked for 20 minutes straight without any interruption. She spared no detail in
describing the medical issues her son faced due to a combination of rare genetic
conditions, developmental disorders, and a traumatic brain injury. “We have no idea
what he will be capable of and what will control what,” said Perri frankly.
While Cory had been making some speech approximations like “mama” and
“dada daddy” up until age 2, one day, said Perri, “everything left. I noticed like, ‘Wow,
why doesn’t he say that anymore?’” With a cadre of therapists, the family tried out many
augmentative and alternative communication iPad apps with Cory, but the only one to
work for him was Proloquo2Go. Perri largely attributed Cory’s success with
Proloquo2Go to how his speech-language therapist had customized the app to take

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advantage of Cory’s verbal abilities. Cory had been using Proloquo “without any icons,
only words because he’s so very strong in reading,” said Perri.
At the end of Perri’s long introductory story, my first follow up question was for
her to tell me more “about reading and the way that he reads. I’m curious, does he use
the iPad as a communication device as he reads?” I asked. I was curious if the iPad
helped Cory to speak words aloud as he read, since reading aloud often helps early
readers with comprehension (Adams, 1990). I was struck though by Perri’s interpretation
of my question. She responded, “So the way I know… There’s many ways that I know
that he can read.” I thought that I had asked Perri about the way Cory read, or the manner
in which he read; Perri thought that I had asked her about the way she knew Cory read, or
for proof that Cory could, in fact, read. Perhaps she misheard me. Perhaps she
interpreted some other non-verbal cue—my tone of voice, my facial expression, my body
language—as skeptical. Or perhaps Perri had regularly encountered others who doubted
that her son with multiple disabilities was already reading at age 4, and those encounters
shaped her reaction to my question.
While I cannot explain Perri’s response with any certainty, reconstructing her
defense of Cory’s reading abilities clearly reveals that various media play a significant
role in how she knows Cory can read, particularly his engagement with books, music,
apps, TV shows, and DVDs. She explained that Cory is “obsessed with letters. He
always has been since he was an infant.” While Cory has significant difficulty talking,
“he tries to read books like Little Blue Truck. He’ll try to say all the words. […] You
can’t really understand him. Slowly, but surely, you can understand him more.” Cory
did not use the iPad to read aloud but rather attempted to speak the words on the page.

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His love of music was another indicator. “Another way is he knows his alphabet, and he
says his alphabet all the time. We have lots of alphabet songs,” said Perri. His dexterity
with and independent use of literacy apps on the iPad was another sign. She gave an
example of a spelling app Cory liked that would show a picture of an object and play an
audio file of the spoken word. “Then it will give you the letters down here, and you have
to drag them into the squares. I don’t even have the color association help or the letter
association help [enabled]. He can drag them all up there,” said Perri.
Cory’s interest in TV shows and DVDs with a literacy-centered curriculum was
particularly strong. “He always likes ‘Blue’s Clues Alphabet’ and ‘Barney Alphabet.’
Now he’s obsessed with WordWorld, Super Why, all these shows that are very supportive
of reading and the alphabet.” Perri discovered that it was not the Blue’s Clues or Barney
series that fascinated Cory, but only the literacy-specific episodes. “I would try different
[Barney episodes] with him because I thought, ‘Oh, Barney. He likes Barney.’ No, he
would not,” said Perri. “The only one that would captivate him is ‘Barney ABC.’” The
PBS Kids series WordWorld was Cory’s favorite TV show. When I visited Cory’s
classroom with Perri, as part of our interview, I could see that he had a red WordWorld
lunch bag with his name on it. Perri had also downloaded all of the episodes for him
since it no longer airs regularly on PBS.
Overall, Cory’s engagement with literacy-oriented media was the primary
explanation Perri provided as evidence of his verbal abilities. “I don’t even know how I
can tell [that he can read],” she said, “but I could tell by the way he interacts with me and
with any verbal thing or a word, word program or words, with his books, with the cards,
when he looks at words, and he tries to say them.” To Perri, Cory says that he is a child

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who reads through his mastery of and interest in print, audio, visual, and digital media
that focus on early literacy.
Kevin. Like Perri, Kevin’s mom, Rebecca, also described her non-speaking son
(13-years-old, mixed race, autistic) as deeply interested in the textual world. “I think he’s
kind of fascinated by words, the look of words,” said Rebecca of Kevin. “It’s curious
because he’s so language delayed.” Similar to Perri, Rebecca also drew heavily on
examples of her son’s media use to communicate to me his verbal abilities. Rebecca
indicated that her family did not have cable television (due in large part to its cost), but
did have an extensive DVD collection. When I asked her if Kevin had any favorites, she
replied, “He used to love Harry Potter. He watched that over and over.” As for why that
movie might have been his favorite, she explained, “I think he mostly liked the end
credits, watching the words come by and listening to all the music. That was like his
favorite part. He forwarded to music and the end credits. That was a lot with watching
the words come by.” Existing research and anecdotal evidence also suggest that many
autistic children have a fascination with moving words, particularly movie credits (Liss,
Saulnier, Fein, & Kinsbourne, 2006; Suskind, 2014).
Kevin’s consumption of text was deeply tied to his creation of textual objects.
Rebecca detailed how Kevin would frequently spell out words he saw in one medium
through another one. For example, words that appeared on the iPad, Kevin would write
on his Magna Doodle, a portable toy with a magnetic drawing board and stylus. When I
first observed Kevin, accompanying Rebecca to a Proloquo2Go training session, he spent
much of the time playing on his Magna Doodle while his mother used the iPad. As we
sat in the family’s playroom, I remarked to Rebecca that Kevin’s Magna Doodle on the

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floor beside me slightly resembled an iPad, to which she replied, “Sometimes, I’ll go [to
Kevin], ‘So you want the iPad?’ No, he wants [the Magna Doodle]. Or he’s playing with
that with the iPad because he’s writing something as he’s playing the game, like ‘Level
One,’ and so many points or something.”
Kevin would also recall words that appeared on the TV screen as part of DVD
menus, and then reassemble those words in the form of letter tiles from the boardless
board game Bananagrams. In fact, said Rebecca, “He spelled ‘Indiana Jones’ before he
could spell his own name, with the little letter titles.” 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 Parlor.’” Kevin’s wordplay with
the language of DVD menus also provided an opportunity for further learning. “Some
things he would misspell and you would have to correct him and he’d want it to be the
other way,” said Rebecca. “Then after a while, you’d break him and he’d spell it the
correct way.” While clinicians tend to pathologize repeated viewing of movie credits by
autistic youth (Liss, Saulnier, Fein, & Kinsbourne, 2006), Rebecca described these
actions as a positive pathway to spelling.
Not only did Kevin play with multiple modes of textual representation, but spatial
and visual representations as well. Rebecca noted how Kevin liked to play games on the
family-owned iPad, particularly Minecraft and Pixel Gun 3D. Kevin was drawn to these
games because they offered players the ability to create custom avatar skins. Said
Rebecca of the two video games, “They’ve got these blocky people, but you can color
their head and arms and body. It’s kind of like if you took the head and then opened it

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flat like a box, and you paint each panel to make them look different. He loves doing
that.” Rebecca emphasized how she understood Kevin’s construction of the avatars in
both 2D and 3D as evidence of his strong spatial skills. “He’s really understanding that
this is the front, this is the top, this is the side and back. And he does it at lightning
speed,” she said.
Kevin especially enjoyed creating video game avatars based on visual
representations of his favorite media characters. Said Rebecca, “He’ll look at his Lego
book, see the character and make a ‘pixelized’ character from his book. And I was like,
‘Wow, look at that! That guy is wearing a tuxedo,’ or, ‘This guy is Batman.’” Kevin was
unable to articulate his grasp of the English language through embodied oral speech, but
Rebecca indicated that he demonstrated strengths in print literacy and an array of new
literacies including technological fluency and visual literacy. Both Cory and Kevin’s
mothers described how their sons’ love of words was co-constituted with their love of
media in various digital and non-digital forms.

Towards an Asset Model of Disabled Children’s Media Use
Parents’ interpretations of their children’s engagement with media as valuable
were intertwined with conceptions of their non-speaking children as social, emotional,
intelligent, and verbal people. The above stories challenge deficit models of disabled
children’s media use, both in terms of what non-speaking children supposedly lack and in
terms of how popular culture purportedly diminishes children’s development. Drawing
on an expressly asset model of media education (Robinson & Turnbull, 2005; Tyner,
1998), I propose a related asset model of disabled children’s media use. Such a model

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assumes that mass media and popular culture serve as an expansion of disabled children’s
communicative capacities instead of a limitation.
Due to the clinical nature of the field of speech-language pathology, whereby
identifying and isolating biomedical deficits in the disabled individual repairs
breakdowns in communication (Beukelman & Mirenda, 2013), the ritualistic, symbolic,
and material aspects of communication (Carey, 1989; Silverstone, Hirsch, & Morley,
1992) are often underemphasized (Alper & Haller, in press). Medical and educational
professionals often privilege children’s spoken words over other forms of communication
and expression with media. I argue however that children’s consumption, creation, and
circulation of new media and popular culture provide a significant communicative
alternative and augmentation to speech production. For example, Stephanie did not use
her iPad and the Proloquo2Go app to speak or type to Marisa the sentence, “I’m going to
take care of you Mom, because you take care of me”; Marisa interpreted Stephanie’s
behavior (curling up with her unwell mother to watch TV) as saying so. Parents found
the manner in which their non-speaking children accessed, manipulated, and interacted
with media as conveying meaning because it communicated something their child could
not express through embodied oral speech.
The present study also suggests that youth with communicative disabilities can
benefit from showcasing their verbal abilities through multimodality. Emerging readers
and writers make meaning out of available cultural materials (Cole, 1996; Barton, 1994;
Gee, 1996; Kress, 1997; Rogoff, 2003; Vygotsky, 1978). These tools for meaning
making increasingly include components from digital media and popular culture (Marsh,
2005). A small but growing body of research suggests that emerging readers and writers

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with physical, cognitive, and intellectual disabilities may particularly 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). For example, Rebecca aptly described Kevin as “very creative. He
mixes things together.” Children purposefully combine and repurpose these components
through “media mixes” (Ito, 2008) and “transmedia play” (Herr-Stephenson & Alper,
2013). Children with significant speech impairments communicate with the materials
they have on hand, which might be the iPad at their fingertips or a handful of
Bananagram tiles.
The promise of an asset model approach is limited though by socioeconomic
factors. Structural inequality and institutional biases shape how doctors, therapists, and
educators do or do not perceive parents’ accounts to be relevant or credible. Lower-class
parents and those without a college degree had a more difficult time parlaying their
children’s engagement with media and technology at home into improved conditions and
opportunities at school. This is likely due to multiple layers of disconnect between home
and school culture. Parents like Marisa and Kameelah explained how they were
exhausted by having to constantly convince experts that their non-speaking child could
relate to others, feel, think, and understand English. Further research is needed to
understand the extent to which cultural and class biases impact institutional perception of
the value of individual disabled children’s out-of-school media use.

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Conclusion
In sum, recreational media and technology can help non-speaking children reveal
a side of themselves that the scientific, medical, and educational communities either do
not acknowledge or choose not to acknowledge. The asset model proposed here of
disabled children’s engagement with media rejects both a deficit model of disability and a
deficit model of children’s popular culture. Embracing an asset model widens
opportunities for children to communicate, with or without speech. This view enables us
to imagine a world with greater collective communicative power, for it extends
recognition of competence that is often not presumed among children and individuals
with disabilities.

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CHAPTER FIVE
TALKING IPADS AND THE PARTIAL PROMISE OF VOICE
The way I equate it is that you don’t not give someone a wheelchair. You don’t not give
someone glasses. You don’t not give someone crutches. It’s the same as a voice. Your
voice is an extension of your body. […] I don’t understand how people can’t understand
that [an AAC device is] a voice. Why would you deny someone that?
—Donna, mother of Sam

We just picked a standard little boy [voice on Proloquo2Go]. […] I think I’m going to
change it to a younger voice, because it doesn’t sound like I would imagine he would.
He doesn’t really have a…voice. It’s not like he can talk a little bit.
—Anne, mother of Eric

Raul has a difficult time with speech. When he can’t communicate, he doesn’t have a
voice. Even though [the iPad is] a speech generating device, which technically has a
“voice” that you can hear, I’m also getting at a more basic form of communication in
having the voice, having the ability to communicate to others and initiate dialog, however
that may look like.
—Nina, mother of Raul

Uplifting news reports about non-speaking individuals’ use of tablets and smartphones
for augmentative and alternative communication (AAC) have been widespread in the
North American popular press since the launch of the iPhone in 2007 (Haller et al., in

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press). These stories commonly portray technology as allowing children to overcome
their disability, a common theme in the news media (Haller, 2010b). Such headlines
regularly call upon the term “voice” to highlight narratives about individual liberation via
technology.
29
Consider the following: “For Children Who Cannot Speak, a True Voice
via Technology” (Hager, 2012), “Tradition gets an update: Technology helps autistic 12-
year-old find a voice for his bar mitzvah” (Rosenberg, 2012), and “How tablets helped
unlock one girl’s voice” (Carmichael, 2012). Microsoft’s Super Bowl ad last year, which
features former NFL player Steve Gleason, who has ALS, claims that the Microsoft
Surface Pro computer “has given voice to the voiceless.”
30
These media representations
figure the iPad as a medium for voice, a tool for finding voice, and a metaphorical key for
freeing a caged voice.
Are they all talking about the same thing when they talk about voice? Voice is a
universally relevant concept yet there is no shared consensus of its meaning, particularly
in media and communication studies (e.g. Couldry, 2009, 2010; Dolar, 2006; Goggin,
2006; Mitra & Watts, 2002; Peters, 1999, 2004). This polysemy is especially palpable in
the three introductory quotes. Each parent articulates different understandings of voice in
relation to their child’s use of the iPad and Proloquo2Go. To Donna, an AAC device is a
voice, and a voice is a prosthesis and bodily extension. For Anne, her son performs voice
through synthetic speech, and in doing so, sounds like an older child. To Nina, voice is a
means of self-representation.

29
Even AAC devices themselves are branded with the rhetoric of liberation. Leading assistive technology
company Prentke Romich produces a speech aid called the Liberator. See
https://www.prentrom.com/support/category/84.
30
http://www.microsoft.com/en-in/showcase/details.aspx?uuid=9ed167e6-2c9f-49b6-83cc-63df7598737d

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While prior chapters focused on clashes of agency between parents and schools,
this chapter explores how non-speaking children’s agency is negotiated across
technologies and bodies. Recognizing and listening to children’s voices—a primary
concern of sociologists of childhood (James, Jenks, & Prout, 1998)—is a more
ambiguous undertaking with respect to non-speaking children (Komulainen, 2007).
Drawing on Tanja Dreher’s (2009, 2012) notion of a “partial promise of voice,” I argue
that popular celebratory discourse around the iPad and Proloquo2Go obscures more
complicated issues around class and cultural capital, and sometimes conflicting
expressions of children’s voice via mobile technologies and AAC devices. Such
oversimplification can lead to significant unaddressed concerns in the design of synthetic
speech and voice output communication apps, as well as inequity in the social systems in
which the technology and its users are embedded.

Giving Voice to Synthetic Speech
Before delving into more abstract notions of voice, it is important to note the
concrete ways in which AAC devices are given voice through synthetic speech.
31
Long
before smartphones could speak multiple languages and GPS devices could spout driving
directions, ancient civilizations attempted to mechanically simulate the human instrument
of voice. The Greeks and Romans would rig statues with concealed speaking tubes to
make their idols appear to talk (Flanagan, 1972). Talking automata designed in the 18
th

31
A “voice” for non-speaking individuals also does not necessarily involve the electronic production of
speech. The Picture Exchange Communication System (PECS), a popular low-tech AAC system, involves
children with complex communication needs exchanging laminated paper cards of picture icons with
another person to ask and answer questions, make comments, and issue requests. PECS cards are stored in
a binder, usually attached to Velcro strips. Speech therapists often refer to the PECS binder as the child’s
“voice,” under the premise that this colloquialism socializes caregivers to the idea that the PECS system
supports their child’s communicative agency (Reno, 2012).

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century drew inspiration from the vox humana pipes of an organ, which imitates a chorus
of human voices (van Leeuwen, 2010). The engineers of early speaking machines
attempted to copy the vocal organs and model human physiology (Dolar, 2006; Hankins
& Silverman, 1995).
In the present day, there are two main kinds of voice output used in electronic
augmentative and alternative communication devices: digitized and synthetic text-to-
speech output (Beukelman & Mirenda, 2013). Digitized output is any kind of recorded
speech or non-lexical sound (e.g. laughter) that can be prerecorded and played back.
Text-to-speech output uses software to translate text into speech (Klatt, 1987).
Contemporary techniques for generating synthetic speech involve a process in which
human speech (usually produced by an actor or actress) is recorded, broken down into
units, stored in a database, and recombined into synthesized words. Older systems
require more digital signal processing, which causes these synthetic voices to sound less
natural (Gold, Morgan, & Ellis, 2011).
While today’s synthetic voices sound less robotic than early systems (Lindsay,
1997; Mills, 2012; Olive, 1997), they are not quite human either. Synthetic speech tends
to lack prosody—the stress, intonation, and rhythm of human speech (Pitt & Edwards,
2003). Humor poses another problem. Movie critic Roger Ebert (2011), who lost the
ability to produce embodied oral speech following complications from thyroid cancer,
famously proposed an “Ebert Test” for humor. Explicitly invoking Alan Turing’s Turing
Test, Ebert challenged engineers to develop a computer-based synthesized voice that
would be indistinguishable from a human voice in its ability to tell a joke well. Even the

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sleekest synthetic voices on the market are a far cry from the vibrancy of Samantha, the
fictional operating system and titular character in Spike Jonze’ (2013) futuristic film Her.
Lack of voice customization and dissatisfaction with voice quality can increase
the likelihood of an AAC device not being used (Lasker & Bedrosian, 2001). Though
most high-tech AAC systems offer some sort of choice in synthetic voices, they are rarely
personalized.
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Synthetic speech options at present suggest a narrow range of genders,
ages, sizes, races, ethnicities and regional accents (Kevorkian, 2006). In an effort to
diversify synthetic speech, companies such as VocaliD have turned to crowdsourcing to
harvest voice from willing “speech donors” (Rutkin, 2014). Engineers craft new voices
using samples from a surrogate that closely matches the AAC user (Bunnell et al., 2010;
Creer, Cunningham, Green, & Yamagishi, 2013).
For all the technological advancements though, some AAC users purposefully
choose a non-“natural” sounding voice. For example, Stephen Hawking has declined
updates to his synthetic voice because he considers it not only part of his identity, but his
trademark (Mialet, 2012) (See Chapter 6). Roger Ebert worked with Scottish company
Cereproc to craft a new synthetic voice using samples from his many recordings as a
movie critic on TV, radio, and DVD commentaries. In his 2011 TED Talk, he mentions
dubbing this voice “Roger Jr.” Ebert (2011) though ultimately chose to stick with
Apple’s “Alex” voice that he had been using to talk on his laptop because the “flow isn’t
natural” using Roger Jr., or at least Cereproc’s latest iteration of it. In sum, the voices of
AAC devices not only relay meaning, but also convey a sense of identity. Writes Pullin
(2011b, pp. 176), “Communication aids are not a neutral technology or transparent

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One kind of personalization is voice banking, which is the process of recording one’s voice for future use
on a communication device as digitized or text-to-speech output. Voice banking is usually done prior to
when an individual diagnosed with a degenerative condition experiences significant speech changes.

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medium.” Besides conveying messages, synthetic voices signal particular meanings.
“Natural” and “unnatural” voices are socially constructed categories.

A Partial Promise of Voice
Expressions of voice through an AAC device are not only shaped by software, but
social context as well. Society tends to privilege oral speech over other forms of
communication as an expression of truth. This dates back to the era of Socrates, who
understood the written word to be a barrier to “pure communication” (Katz & Aakhus,
2002; Peters, 1999). Speech is often idealized as necessary for “authentic” human
connection (Derrida, 2011; Ong, 1982). In the English language, what it means to be a
non-fully developed human is actually defined by a deficit of speech, as the Latin root of
“infant” (in fans) means “not speaking” (Ong, 1977). This fetishization of corporeal
voice dominated Euro-American technoscience in the 1940s and 1950s, particularly
cybernetics and communication engineering (Axel, 2006; Mills, 2012). For example, the
Turing Test determines humanness based on the ability to converse (Hayles, 1999). But
if we take for granted that everyone has an embodied voice, then we run the risk of
disenfranchising individuals who do not communicate through oral speech. People with
disabilities are often spoken for without having a say of their own (Goggin, 2009). The
voices of those considered “non-verbal” are particularly discounted (Ashby, 2011;
Komulainen, 2007; Moser & Law, 2003).
While democracies claim to represent vox populi (the “voice of the people”),
ordinary citizens—including non-speaking individuals—struggle to be heard through
traditional and new communication tools (Bickford, 1996; Burgess, 2006; Couldry, 2010;

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Crawford, 2012; Dobson, 2010; Macnamara, 2013).
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Dreher (2009, 2012) offers a
useful way of conceptualizing voice that acknowledges tensions between uncritical
celebrations of “speaking up” and the importance of having a “voice that matters”
(Couldry, 2010). Dreher (2012) uses the phrase “a partial promise of voice” to highlight
the responsibility that social institutions bear to follow through on aims to promote the
voices of marginalized groups with commitments to response and recognition. Speaking
and listening are intertwined, write Dreher, forming “circuits of democratic
communication” that frequently breakdown. While Dreher focuses on the dynamics of
listening at a policy level, the notion of voice as dynamic and distributed has also been
taking up by social researchers studying speech impairment (Mialet, 2012; Moser & Law,
2003; Naraian, 2010). Drawing on Bakhtin’s (1981, 1986) notion of voice as a
multidimensional social construct, Komulainen (2007) contends that the voices of non-
speaking children are not static entities to be found, but dialogic processes.
Building on this work, the following sections loop parental understandings of
their children’s voice—conceived by them as something that is at once bodily,
performative, and political—back into liberation narratives about the iPad and
Proloquo2Go. Popular discourse does not address the overall inequalities in how non-
speaking children’s voices are valued, or the unequal distribution of voice across gender,
race, ethnicity, class, and linguistic background. Having access to an iPad with
Proloquo2Go does not guarantee that all children are heard. At present, the promise of
children’s voice through the iPad and Proloquo2Go is only partially fulfilled.

33
Even these scholarly conversations though, productive in their own right, can easily veer towards treating
disability as a metaphor rather than meaningful in its own right. For example, Couldry (2014, p. 23) writes
that neoliberal states are “‘voice blind,’ that is, blind to the wider conditions needed to sustain new and
effective forms of voice.” Couldry employs a metaphor that evokes both speech and visual impairment
without directly addressing either population.

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Voice as Bodily
One way of understanding voice is as a medium that extends the communicative
capacity of the body over a distance (McLuhan, 1994). Writes Fortunati (2003, p. 62),
“Given that the voice is an extension of the body, we could say that the body reaches
where the voice does, that is, a good many meters away from the body itself.” There
were four ways in which parents understood the possibilities and limitations of their
children’s voices as pertaining to the human body: 1) that voice belonged to a single body
or was shared across multiple bodies (particularly the bodies of mothers); 2) the different
terms that parents used to refer to the iPad, including that the device was a prosthetic
“talker”; 3) that the voice produced by the iPad had a positive or negative impact on the
child’s embodied oral speech production; and 4) that technology might provide a more
direct connection between the child’s inner voice and their speaking voice. In these
different understandings of voice as something of the body, class and cultural distinctions
also emerged.

One Person Per Voice?
A key tension emerged as to whether or not any individual besides the child AAC
user (e.g. other children, parents) should be allowed to interact with the iPad and
Proloquo2Go. Parents and professionals agreed in principle that a non-speaking child’s
AAC system should always be available to them. Unlike one’s vocal organs housed
inside their body though, another individual could potentially use the child’s iPad and
Proloquo2Go to produce speech. This led to a tension around whether voice resided

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solely in the child’s body or was distributed across multiple bodies supporting the child’s
synthetic speech production.
Children and peers. Some parents were concerned that other children,
particularly those unfamiliar with the concept of AAC, might view the iPad with
Proloquo2Go as a toy. Though the iPad is often praised as an AAC device because of its
social acceptability (McNaughton & Light, 2013), the desirability of the cultural object
can interfere in its function as a speech aid. When I asked David if Beatriz brought her
iPad along when visiting extended family, he replied, “No, because then kids, based on
her condition, kids take it away from her, go play the games.” “Her condition,” David
thought, made Beatriz a more vulnerable target for other children’s desire for the cool
gadget.
Besides child family members, some parents also had anxieties about classmates
and peers wanting to use the iPad. Said Nina of Raul’s classmates, “Sometimes they
want to play with it and they think it’s a game because that’s what they know an iPad to
be. But then I have to say, ‘This is Raul’s voice, this is how he uses it.’” The
technology’s mixed use created both opportunities and limitations in certain social
contexts. Alice reported that the kids at church liked to play with Danny’s iPad. She
didn’t mind if they wanted to use it, “but he needs to be able to speak,” she said.
Some non-speaking children were able to assert limits on their classmates’
curiosity. Peter reported that Danny used AAC to resist his classmates’ attempt at using
it without his permission. “Some kid came over to play with his iPad,” said Peter, “and
[Danny’s] like, ‘Stop, stop, stop.’ Then the kid stopped and he was like, ‘Go, go, go, go,
go. Go away.’” Rebecca noticed that Kevin had accidentally taken a video with the iPad

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that documented other kids on the playground trying to use it. “He was blocking so the
kids couldn’t play with it or whatever,” Rebecca said. “But he hung onto it and the other
kids were respectful. They didn’t take it away from him or anything.”
Parent and child. In addition to other children, some parents were concerned
about interfering in their child’s communication by using the child’s iPad and
Proloquo2Go to speak on their own behalf. Perri was initially using Cory’s iPad to talk
to him, but later stopped. She explained that when Cory’s speech therapist encouraged
him to communicate using Proloquo2Go, the therapist said to him, “‘Where’s your
words? These are your words. Good using your words.’” Perri interpreted this to mean
that the speech produced by Cory’s iPad were his words and his alone. She decided to
separate “Mommy’s words” from “Cory’s words” by downloading Proloquo2Go onto her
own iPad, and modeling its use for Cory on her tablet. This meant that she carried
around two iPads—hers and Cory’s—at all times.
Other parents embraced the fluidity between themselves, their child, and the
child’s iPad in terms of where one person’s body or voice ended and another’s began.
Daisy felt that there were some situations in which it was better if she talked through
Thomas’ iPad instead of using her own embodied oral speech. In Thomas’ Proloquo2Go,
there was a folder for “Mommy’s words” that included phrases such as “No biting,” “No
grabbing,” and “No kicking.” Daisy said that Thomas “wouldn’t listen much to me when
I’m saying it, but he would listen to the iPad. When he started tantruming and biting, he
would listen to this. […] I just keep on hitting this over and over, then he stops.” Daisy
had her own theory as to why Thomas obeyed his mother’s instructions when spoken
through his own iPad. “I guess it’s the tone, computerized…the sound of it,” said Daisy.

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Her voice and the synthetic voice of Proloquo2Go symbolically blended together at
times.
Nina thought that it was important for her to model use of Proloquo2Go for Raul.
She said that the behavioral therapists that initially worked with Raul told her, “‘That’s
his [iPad]. He touches it and nobody else touches it and that’s it. We don’t use it.’”
Nina began to do some online research, and came to a different conclusion. “It was like,
‘Hey, we need to use this too because it’s like learning a second language.’ You have to
model that language for them.” Nina understood the iPad as both belonging to Raul and
distributed across the adults supporting his use of it. “So now I see it more like, OK, it’s
not just Raul’s. It’s like, it is Raul’s but we need to use it to interact with him,” said
Nina. A mother’s touch guided Raul’s interaction with the screen and his production of
speech.
There was clear a gendered element to this distribution of voice. For Nash, who
had limited motor control due to cerebral palsy, his mother’s body became a key
component of his communication system. Because he used his full body to gesture and
touch the iPad, Nash had difficulty using an iPad mounted on his walker or wheelchair,
as the physical mobility systems restricted his upper body movement. Instead, I watched
as his mom, Taylor, nimbly held Nash and his iPad simultaneously while he shifted his
body weight in her lap and extended one arm to select a message from the screen. Taylor
became a more responsive seating system and iPad mount than the objects themselves.
This interdependency though was not distributed equally between Nash’s parents. Rachel
asked Nash’s dad, Todd, if he ever used Proloquo2Go with Nash. Todd said that he

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didn’t, and Rachel asked why. Compared to Taylor, he replied, “I feel like I’m not
holding him right, or the iPad right.”
Mothers in particular tended to physically bear responsibility for their child’s
communication through the iPad. Nina felt frustrated when she forgot to take Raul’s iPad
on a recent trip to the pumpkin patch. “I usually bring it, or I have him bring it with us,”
explained Nina. “I told [Raul], ‘I’m sorry, buddy. I forgot your talker. Well, we’ll just
hang out here.’” Kameelah reflected on the affective labor involved in being a bodily
conduit for Talen’s communication. “I feel horrible when we leave the house, and we
forget the black iPad,” said Kameelah “because I’m like, ‘How would I feel if somebody
just like ripped my voice box out? Because, you know, nobody holds my voice but me,
right?” Kameelah felt personally responsible for impairing Talen, likening forgetting his
iPad to leaving behind a part of his body. “You’re extra-handicapping him or extra-
disabling him by [leaving the iPad at home]. I feel really bad when that happens,” she
said.
In addition to the “second shift” work of household labor (Hochschild, 1989),
U.S. mothers are largely charged with decision-making tasks regarding their children’s
media and technology use. This dynamic process involves additional “third shift” work
of managing their own emotions and anxieties about parenting and about their children
(Clark, 2011; Seiter, 1995). Perri, Daisy, Taylor, and Kameelah balance their desires to
be good mothers with the daily demands of supporting their child’s well-being and their
use of assistive technology. While the voices of children using the iPad and
Proloquo2Go are singular as well as mutually constructed—shaped by social interaction

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with siblings, peers, and parents—the distribution of both voice and voicelessness is
heavily weighted towards mothers.

“The iPad,” “The Talker,” and “The Perfect Word That Also Leaves It Open”
Distinctions emerged between more and less privileged parents around the terms
that they used to refer to the child’s iPad with Proloquo2Go. A number of more
privileged parents and professionals referred to the child’s iPad as a prosthetic “talker,”
whereas less privileged parents tended to use more instrumental terms, like calling it “the
iPad” or “the device.” Noted Nina, “I had heard other people say ‘talker,’ so we just
picked that.” Rachel encouraged a number of her clients to use the term. “What do you
call it?” said Rachel to James’ mom, Cathy, holding up the iPad. “Your words, your
device, the iPad,” said Cathy. “It’s not that we try to teach him to say ‘device,’ but we
say it when we are with other people.” Rachel suggested Cathy call the iPad “a talker”
instead. “It’s just a way to call…whatever this is to you,” she said, “It’s just that with
calling it ‘iPad,’ he might think that it was for other things, like games, and not for
talking, which is what it should primarily be for” (See Chapter 3). This highlights the
ways that sociotechnical systems can reinforces class distinctions due to institutionalized
cultural capital. In the view of professionals, there were “right” and “wrong” names to
call the iPad with Proloquo2Go. More privileged parents got it right, and less privileged
parents were just doing it wrong.
“Talker” encompassed a range of meanings for more privileged parents: a tool
that a person uses for talking, a machine that produces speech outside of one’s own body,
and a term for older AAC devices. During Danny’s ABA therapy, Alice and Peter would

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leave one iPad “as his talker and the other one can be a reward,” Peter explained, “So
you’re not taking away his voice when you’re taking away his iPad.” Alice and Peter
also used talker to refer to more traditional, bulkier AAC device. “Have you picked up a
talker?” Peter asked me, “It’s not portable for a little child.” Alice noted that an iPad was
“more socially acceptable than a talker.”
Less privileged parents used terms for the iPad that were less explicitly associated
with talking. Kameelah currently referred to Talen’s AAC device as “the black iPad” and
was reluctant to call it “a voice.” She had encountered a speech therapist that used the
latter term. “She would call it, for her kids, ‘Where’s your voice? Don’t forget your
voice. Bring your voice.’ I don’t know how I feel about that.” While Perri embraced the
iPad as “Cory’s words,” Kameelah was less inclined to adopt the professional language.
She felt that the term implied that Talen would be essentially voiceless if they were
without his iPad. “I don’t want you to feel like you can’t communicate if you don’t have
it,” she said. Kameelah thought it was important to decouple the machine from the body,
though she hadn’t decided on a permanent way to refer to Talen’s iPad with
Proloquo2Go. “It’s got to be the perfect word that also leaves it open for, ‘This may not
be something that you use forever,’” she said. The tethering of machine and body could
be temporary, and professional terminology around the iPad and Proloquo2Go did not
reflect this fluidity.

Embodied Oral Speech
Parents also discussed whether speech output, produced by the iPad, would
promote or prevent their child from talking. Before acquiring the iPad and Proloquo2Go,

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some initially had faith that their child would eventually produce embodied oral speech.
Daisy admitted that when Thomas was in first grade, she was “still hopeful that he’s
gonna talk.” She thought at the time, “‘No, speech therapy. Let’s teach him how to talk.
I don’t want him to use that device, cause he’s not gonna ever learn to talk. And he’s just
gonna be dependent on that device.’” Donna described her initial thinking as “‘No, no,
no, he’ll be OK. He just needs a little bit longer.’ I was a little bit in denial about him
needing a device.” Donna and Daisy deferred introducing their sons to a voice output
communication aid, hoping that with time and speech therapy that they’d be able to talk.
For some parents whose children had initially started talking when they were
younger, the introduction of an AAC device meant abandoning hope of the return of their
child’s voice. Perri rebuffed her son Cory’s use of an AAC device initially, thinking it
was an unnatural way of communicating. “‘I want his sounds back. I don’t want him to
tap an iPad,’” she reflected. Sara said that she initially “didn’t want to give up on the
thought that [Isaac] was going to use his voice, fully use his voice. In my mind I was
thinking, ‘Well, if it’s going to replace it, he’s just going to rely on that.’” Karun said,
“Till now, I have hope that [Pargev] might suddenly just talk sentences. I prefer the
words rather than the iPad.” Rob actively encouraged Luke to communication in more
“traditional” ways. “I’d rather be able to get him to speak it than have to use the machine
to speak it,” he said, “If he can find another way to communicate without it that’s more
traditional, then we encourage that.” A number of parents perceived the technology as
having less-than-human qualities that might reflect back on their child.
Despite the hesitations, parents described an on-going process of coming to terms
with their child’s speech abilities and disabilities. “I came to the realization because he

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was gonna be 11, that he’s not really ever gonna talk,” said Daisy, “If he does, it’ll just be
sounds.” After speech therapy and sign language were unsuccessful, Perri also turned a
corner. She said, “I’m like, ‘I don’t care, at this point I don’t care. He has a lot to
communicate. I don’t know what he’s got in his brain, but I know it’s a lot. I just want
to hear it.” Cory took to the iPad quickly, which Perri interpreted as, “He was telling us,
‘Hey, I want to talk. I need some way to do it.’”
A number of parents remarked that their child’s use of the speech generating
device was actually contributing to increased attempts at spoken language, which
growing research supports (Kasari et al., 2014; Rispoli et al., 2010). “Now, he’s making
more sounds,” said Daisy, “He’s copying.” Said Vanessa, “I honestly feel like
Proloquo2Go has improved her verbal language. […] She’ll even type it out and say it on
Proloquo2Go, and then she’ll say it.” Voice is not only co-constituted by the child’s
body and the bodies of others, but also in part by the interconnectedness of humans and
machines.

“The Brain-Voice Connection”
Human communication is said to have an “interiority of sound” (Ong, 1982), in
that our interior thoughts are private until expressed (Peters, 1999, 2004). Some parents
hoped that the iPad and Proloquo2Go would give them access to their child’s “inner
voice,” despite the limitations of their oral speech. Rebecca said that in the future, she’d
like Kevin, “to actually communicate more of what he’s thinking. […] He might think it
in his head but he might not be able to verbalize it. There’s the brain-voice connection or
something.” Nina also expressed a desire for her child to use technology to share his

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inner world with her. Said Nina, “when I say ‘voice,’ it doesn’t have to do with always
hearing it necessarily, but what’s coming from inside them—their emotions, their
thoughts, their insights.” These parents viewed the technology as a way to scaffold their
child’s brain-voice connection.
A number of parents looked forward to a day in which technology provided a
more seamless link between the child’s inner thoughts and their outward production of
speech. “Probably in the coming years, they are going to come up with something much
better,” noted David. He mentioned one such innovation, not identifying its source.
“There is this device that is interesting me a lot. It is like a little band,” he said, gesturing
to his head, “and this band interacts with your brain just by looking at the screen […]
instead of using your finger.” Peter mentioned his hope that one day Danny would also
be able to wear an AAC device. “I’d like to see—and I know it’s coming someday—
where the technology is a lot more integrated,” said Peter. “So we didn’t have to worry
about carrying it along, so it could be just on a sleeve or something like that.” The
advancements described by David and Peter would overcome bodily limitations that
prevented synchronization between the brain and the voice.
A few parents also made suggestions for novel interactive technologies that might
better elicit voice from their minimally-speaking children. “Out there, there are games
for verbalizing,” said Karun, “like the Xbox games, something that a real person is
talking.” She imagined a game featuring a “character that the child chooses to be. The
character talks instead of him, or something like that.” She mentioned similar products
on the market. “Maybe you should track down one of the Xbox games that my son
plays,” she told me. “It has people who talk. They don’t talk a lot. One of them, which

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is Sonic,” she said referring to the title character of Sega’s Sonic the Hedgehog franchise,
“Sonic talks a lot. Something like that for autistic children.”
Karun is not alone among parents in suggesting that interactive virtual agents
might motivate autistic children with significant difficulty speaking to talk. Currently,
the research is unclear regarding whether animated or non-human forms are more
effective at eliciting responses than humans (Carter, Williams, Hodgins, & Lehman,
2014). Users can form intimate relationships with interactive assistants such as Apple’s
Siri (Gillespie, 2014) or interactive anthropomorphic characters such as Talking Tom
Cat.
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Nelson said that the Talking Tom app offered Stephanie and other autistic children
“a creature that repeats everything they say and has the patience to listen.” Using her
voice, “She makes a kitten meow, she makes [Talking Tom] jump up on the ceiling, she
makes him fart, she knocks him down.” Marisa said that Stephanie’s vocal interaction
with the Talking Tom app was the first time “we really hear her voice.” Karun, Nelson,
and Marisa described a permeable distinction between inner and outer voice, one
constantly being created through interactions with other people and machines.
There are significant issues though regarding which parents are able to leverage
these experiences into improved learning opportunities for their children. In October
2014, the New York Times published an article entitled, “To Siri, With Love: How One
Boy with Autism Became BFF With Apple’s Siri” (Newman, 2014). In the article, Judith
Newman, a parenting blogger for the NYT, describes how Siri motivates her autistic son,
Gus, to communicate. Newman writes, “Gus speaks as if he has marbles in his mouth, but
if he wants to get the right response from Siri, he must enunciate clearly.” His bond with
Siri is forged because she reliably and patiently retrieves information about his specific

34
http://talkingtom.com/

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interests of airplanes and turtles. Moreover, Newman claims that her son’s experience
with Siri is actually changing his communication with her for the better. Though Gus and
Stephanie might be using interactive media to support their communication in very
similar ways, their backgrounds could not be more different. Gus’ mother is an Anglo,
Ivy-educated, tech-savvy parenting columnist for one of the world’s most elite
newspapers. Stephanie’s mother, Marisa, is a Latina immigrant from Mexico, a non-
native English speaker without a college degree. Gus attends LearningSpring, a state-of-
the-art private school for autistic children. Stephanie’s parents, on the other hand, feel
that they receive little support from public school professionals and therapy providers.
Parents’ ability to mobilize cultural capital shapes how helpful these widely accessible
tools can be in everyday life.

Voice as Performative
In addition to a bodily component, parents discussed voice as a means for their
child to perform identity. In this sense, identity is not a static or single entity, but a set of
tensions created through interactions with others and one’s environment (Goffman,
1959). Parents talked about the synthetic speech generated by the iPad and Proloquo2Go
as having to do with four aspects of identity performance: 1) sounding one’s age, 2)
sounding human, 3) sounding related to one’s family members, and 4) sounding of one’s
cultural background. Beatriz’ case illustrates the complicated entwinement of these
various aspects of identity and performance through voice when coming into contact with
different sociotechnical systems that privilege dominant groups (namely white males).

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“I Don’t Want It to Sound Like a Man”
A number of parents wanted their children to speak with a synthetic voice that
reflected the maturation level of the child. Alice noted, “I know we wanted a child
because it would just be weird for Danny’s voice to be like an adult male. It would just
be odd. Because you want it to fit your kid.” Esosa remarked that Chike’s school had
initially set his voice in Proloquo2Go to sound like an adult man, which at the time was
the only male option. Chike said however, “I don’t want it to sound like a man.” When
Proloquo2Go released child voices, “I picked Josh, who’s a boy,” she said. Donna was
preparing for the day in which Sam hit puberty. Said Donna, “Once Sam’s voice changes
and he gets to that age, then we’ll switch the voice to a more mature voice.” Childhood
and adulthood are performed in part through synthetic voice.

“I Found the Voice That Sounded Most Like a Human Little Boy”
Not only did some parents value a voice that sounded like someone of the same
biological age, but also like a “human” child. Moira’s mother, Vanessa, explained that
Proloquo2Go “came out with an updated version and they had a better kid voice […] The
one [Moira] has now definitely sounds like a little girl.” Similarly, Perri noted, “I found
the voice that sounded most like a human little boy.” Others did not mind if an AAC
device provided a less natural voice, similar to Stephen Hawking and Roger Ebert’s noted
preferences. “The voice that comes out of that, that’s his voice to me,” said Donna.
“That’s Sam. I think the voice is called ‘Kenny,’” she said. Donna said that she liked
“quality of the voice that comes out” even though “there is a tiny touch of roboticism to
it.” To Donna, the non-human “Kenny” voice took on the human qualities of Sam, not

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the other way around. “Whenever I hear Kenny in the machine speak,” she said, “that is
Sam to me.” What it means to be human is also enacted through the technology.

“Most People in Families Sound About the Same”
In addition to desiring a synthetic voice that mimicked the vocal qualities of a
human child, some parents desired a voice that sounded biologically related to their
family. “If Danny spoke, he would sound much like me at that age, right?” said Peter
rhetorically. Unaware of the efforts of companies such as VocaliD, Peter wished “they
would allow you to record some subset of syllables or whatever, and then pitch it down,
make it higher pitched, and say, ‘Hey, there’s Danny’s voice.’” Peter thought it would be
ideal for Danny to have a customized sound “because most people in families sound
about the same, pitch about the same, cadence about the same.” Peter wanted the design
and development of synthetic speech to more closely mirror biological reproduction and
family socialization.
Some parents, though, chose voices for their children that purposely did not sound
related to them, but connected in other ways to family. For example, Mark noted that
they had chosen River’s voice on Proloquo2Go largely because it bore the name of
River’s cousin, Liam. “He’s got a cousin Liam, so that was kind of cool […] We
checked out Liam because it’s his cousin’s name and it just seemed like the right cadence
and everything,” said Mark. The “Liam” voice, however, is that of an Australian boy,
and neither River nor his immediate family members are from Australia. Children
perform family belonging and identity through their synthetic voices, but not always in an
expected manner.

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“They Can’t Say The ‘C-H’ The Same”
What it means for family members to “sound about the same” is about much more
than biology; cultural identity can be as, if not more, important. Esosa remarked that it
was “good” that Proloquo2Go had released a voice that sounded like “an Indian kid
speaking English.” Though she herself was originally from Kenya and not India, she
noted, “If you’re from an Indian family and everybody sounds a certain way, you can
sound the same way if you want.” Not all children though had the same options to sound
like their family members, even if they wanted to. Proloquo2Go struggled with
pronouncing names and terms that originated in languages other than English. For
example, Sara noted that, “there’s all the Jewish food [Issac] eats, like challah. I typed it
in [to Proloquo2Go]. It doesn’t say it the right way, because they can’t say the ‘C-H’ the
same.” Issac’s voice was rendered distinct from his family’s because the software did not
recognize such variation, bounding his performance of culture and identity.

“Not According to Her”
Beatriz performed age, human expression, kinship, and culture in various ways
through her voice. While her developmental disability impeded her ability to produce
embodied oral speech, I would still call her chatty. She knows a few signs in American
Sign Language, like “water” and “cookie,” and uses these to communicate at home with
her family. In her own way, she also says phrases like, “Oh, me!” uttered with a blend of
sass and exasperation that reminds me of preteen girl characters on the Nickelodeon and
Disney Channel shows she likes so much.

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The computerized voice that speaks for Beatriz does not impart her sass or
exasperation. Prior to using Proloquo2Go on the iPad, Beatriz’s high-tech AAC system
consisted of an iPod Touch and an app called TapToTalk. Unlike Proloquo2Go, which
employs synthetic speech, TapToTalk employs digitized speech. The app allows users to
speak into their mobile device’s microphone and record human speech that can then be
reproduced when the user taps a corresponding button on the app. Beatriz’ older sister,
Ariana, provided a donor voice for Beatriz to speak with through TapToTalk, a DIY
“hack” of the reverse-engineered familial voice that Peter described above.
David preferred the pre-recorded sounds of Ariana to the synthetic speech of
Proloquo2Go. He explained that there were three main reasons for this preference:
“because it was her sister voice, and it was according to her age, and it was on the tone of
voice that we wanted.” David’s desire for Beatriz to speak through “her sister voice”
reflected the bonds of affection between the girls. As I was interviewing David and Pilar,
Ariana came home from school and entered the room where we were all sitting. Beatriz
jumped up to hug Ariana tightly, and her parents and sister laughed over this warm
display of affection. “There is a lot of love around this house,” David remarked happily.
In addition to reflecting their relationship, Ariana’s 13-year-old voice sounded
close in age to that of 10-year-old Beatriz. Of the Proloquo2Go synthetic speech, David
said, “It’s like an old woman, or an old man talking.” Besides sounding naturally related
to Beatriz and similarly youthful, Ariana used more human expression in her phrasing
than Beatriz’s current Proloquo2Go voice. “Sometimes, it sounds too automated,” said
David. He reenacted for me how his older daughter spoke when recording her voice for
Beatriz’ use—“I want bacon! Water, please!” He recalled, “I remember when her sister

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recorded phrases on the other program […] She was putting feeling into it. Because you
were customizing the phrases.”
35
Each time that Beatriz used her sister’s voice in
TapToTalk, there was a personal touch to every button tapped. Overall, the Proloquo2Go
voice was “not according to her,” said David, because it was robotic, Anglo, and of an
older woman.
If the family preferred the TapToTalk voice to Proloquo2Go, then why not use
TapToTalk instead? David explained to me that it wasn’t that simple. After the school
district provided Beatriz with the iPad and Proloquo2Go, the family “decided not to
continue paying for the [TapToTalk] annual subscription, because she cannot go using
two—one here, one there.” David thought that Beatriz using a singular voice (one that
the school district would support Beatriz using at school) was more important than her
speaking with a voice that had a better all-around fit with aspects of her identity. “I know
it’s good,” he said of the Proloquo2Go software, “but we just need to find ways
of…changing the tone of voice first.”
For its part, AssistiveWare makes numerous claims about voice in its publicity
materials. The company describes Proloquo2Go as an app that “provides a ‘voice’”
36
and
also as voice, with the tagline, “A voice for those who cannot speak.”
37
The voices that it
provides, though, code identity—mechanically and culturally—into the synthetic speech
software. As of August 2014, Proloquo2Go offered four “US English” children’s voices:
two “artificial child voice” options named “Nelly” and “Kenny,” and two “genuine child

35
Since my initial interview with David and Pilar in February 2013, AssistiveWare has made some
progress in presenting more expressive voice options. The release of Proloquo2Go 3.0 in May 2013
included a new “ExpressivePower” feature, which allows child users to say special emotive expressions
(e.g. “It’s not fair!”) and sounds that children might make during play (e.g. a dog bark).
36
http://download.assistiveware.com/assistiveware/files/Proloquo2Go Fact Sheet.pdf
37
http://www.assistiveware.com/product/proloquo2go

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voice” options named “Ella” and “Josh.”
38
The first names that label the American
children’s voices bear no racial or ethnic markers. A behind the scenes video on the
AssistiveWare YouTube page on the making the Ella and Josh voices shows that the
company used sounds produced by a white boy and girl (Assistiveware, 2012).
In January 2014, AssistiveWare made some strides in the diversity of synthetic
voices for U.S. children by introducing “Valeria” and “Emilio,” the “World’s first
Bilingual Spanish-English Children’s Text to Speech Voices” (AssistiveWare, 2014).
Initially, Valeria and Emilio were only made available for AssistiveWare’s visual
storytelling app Pictello, text-based communication app Proloquo4Text, and Infovox
iVox voices for Mac systems, but by December 2014, Valeria and Emilio were made
available on Proloquo2Go. AssistiveWare still has a long way to go though in offering
voices that reflect a diversity of backgrounds. As of January 2015, Proloquo2Go offers
users twenty-one voice options that speak “U.S. English.” Of these, there are 14 male
options, but only 7 female options, resulting in a 2:1 ratio. Only three of these 21 options
suggest a non-white speaker, and these choices are problematic as well. For example,
they offer “Saul,” a “Hip Hop male adult” voice, ostensibly coding blackness through the
cultural marker of hip hop. There is not a single option for an adult female of color who
speaks “U.S. English.” The story of Beatriz and her family illustrates the need for even
more extensive cultural translation work so that children can perform voice in harmony
with their own evolving sense of identity.
These options, or lack thereof, made a difference in parents’ understandings of
their child’s voice. More privileged parents of white boys, like Perri and Donna, could
more easily identify their sons in the default voice settings on Proloquo2Go, and could

38
http://www.assistiveware.com/product/proloquo2go/voices#en_US

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envision the synthetic voice maturing along with their child. Less privileged parents,
particularly parents of non-white girls, had more difficulty in hearing their child in
Proloquo2Go’s voice options. This discussion of voice output then illuminates the ways
in which social and technical systems can privilege children with the right kind of
embodied cultural capital, as one example of embodied cultural capital is the manner in
which a person speaks. Proloquo2Go and synthetic speech systems in general inherently
privilege the literal voices of white males over non-white females.

Voice as Political
Parents discussed their child’s voice as being political in the sense that the iPad
and Proloquo2Go were essential tools for the child to exert their own agency. These
tools though were sometimes not fully available to their child. Said Nina, “Without the
iPad, [Raul] has no voice.” This empowered and disempowered voice was discussed in
three situations: 1) when the child’s safety was at risk, 2) when the child was
experiencing physical pain, or 3) when the child was articulating resistance to something
in their environment.

Safety
Parents understood the iPad as something children could use to help themselves
stay safe. Said Mark, “If [River] gets lost in the mall, he’s got his device. He could just
be like, ‘This is my dad’s phone number, call him.’” Some parents also remarked that the
ability to use one’s AAC device in an unsafe situation was heavily shaped by whether or
not law enforcement was prepared to deal with their child’s disability. Due to this

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uncertainty, Peter was teaching Danny to be able to gesture “yes” and “no” so that he
could “at least answer 20 questions.” He explained, “If a cop’s asking [Danny]
questions, and got a gun on him, no cop in the world’s going to allow him to grab a
talker.” While Danny is white, being a member of a minoritized racial or ethnic group
further complicates the politics and dangers of encountering law enforcement officers
while being non-speaking and disabled.
Moira’s mother, Vanessa, related an incredibly harrowing story having to do with
these concerns: repeating one’s phone number, getting lost, and encountering law
enforcement as a non-speaking minor. It is a story that deeply complicates celebratory
narratives about access to the iPad and Proloquo2Go as equivalent to having a voice.
Unlike most of the Proloquo2Go users I spent time with, Moira directly input all of the
words that her iPad spoke by using the app’s typing functionality. Vanessa said that she
was generally happy with Proloquo, except for its pronunciation of numbers. “I’m trying
to teach Moira to memorize phone numbers,” she told me. Vanessa said that one digit at
a time, she would type in “6-5-7 or 7-1-4, but it’ll be like, ‘714,’ ‘992,’ ‘0008.’”
39
Moira
tried to work around this by spacing the numbers out, but found it to be awkward to type.
Said Vanessa, “Teaching her to have to put those spaces in between is so weird.”
Teaching children to memorize their own phone number and to repeat it to a
helpful adult in case of emergency is generally a top priority for parents and teachers of
young children. Vanessa though had reason to be more motivated than most. “The
reason why I’m trying to teach her this,” she told me, her voice shaky and with tears
welling in her eyes, “is because three years ago, I woke up one morning and she was

39
Please note that all personally identifying information has been removed. This is not Moira and
Vanessa’s real phone number or area code.

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gone. Front door was wide open. I ran outside. I literally pissed myself. All I saw was
white light. I was just in shock.” Moira had walked to Starbucks, one of her favorite
places but “didn’t take her iPad and went in her nightgown, no shoes, no undies,
nothing—I’m thankful she even had a nightgown on,” said Vanessa with a shudder.
Outside of her home, and without her mother or her iPad, Moira encountered a
situation in which no one around knew how to communicate with her. The employees at
Starbucks, Vanessa recounted, “were like, ‘Who does this child belong to?’ First they
thought she was deaf and then they realized she was responding to them. They’re like,
‘She must have autism.’” The Starbucks employees then called the local police, who
picked Moira up and brought her to the station. They “tried to get her to write,” said
Vanessa, but “her handwriting’s chicken scratch.” It was a nightmarish situation: Moira
had no effective way to communicate, and her mother had no idea where she was.
After discovering that Moira was gone, Vanessa picked up her own phone and
dialed 911. “They were like, ‘We have her. She’s here and she’s safe,’” recalled
Vanessa. Once at the police station, Vanessa was dissatisfied by how the officers had
handled the situation. She told them that Moira types to communicate. “Then they’re
like, ‘Ohhh! Ahhh! We didn’t even think of that!’” said Vanessa. The officers lacked
awareness of how else a non-speaking individual might communicate besides oral speech
or written text. “It seems like there needs to be more training in that, and there are police
agencies that do have that training available. But clearly our police station didn’t,”
Vanessa remarked with thinly veiled resentment.
The police department would likely have had an easier time identifying Moira and
contacting Vanessa if Moira had been wearing an ID bracelet, placing responsibility on

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the individual. Vanessa though said that Moira “refuses to wear a medical bracelet. The
[occupational therapist’s] trying to work with her on wearing it, and it says, ‘My phone
number,’ and then it says, ‘Types to communicate.’” Without any certainty that the local
police force would get better training or that Moira would eventually be okay with
wearing her medical bracelet, Vanessa took matters into her own hands by teaching
Moira how to type her phone number “so that if someone’s like, ‘What is your phone
number?’ she can just type it.” Vanessa hoped that Moira could use Proloquo2Go to
speak on her own behalf in an emergency, but the app’s vocal mispronunciation was
hindering her ability to say her own phone number.

Pain
Parents also struggled to know when their non-speaking child was experiencing
pain, and hoped that children could one day voice their own discomfort through the iPad
and Proloquo2Go. “[Talen] can’t tell me he has a stomach ache,” Kameelah explained,
“He cognitively has to get and understand that when my stomach hurts and they ask me
how I feel, this is the icon that indicates how I feel. That is the hard work.” Since
Stephanie was having a difficult time mastering Proloquo2Go, Marisa hoped that her
teachers might also support her burgeoning typing skills in case they came in handy.
“Maybe Stephanie will be able to tell me, ‘Mom, I don’t feel good.’ By typing.”
Some parents identified times when their children were able to use the iPad to
successfully relay their physical state. On top of Danny not being able to speak, Alice
said, “he has a very high tolerance for pain so it’s really hard to tell when he’s sick. He
certainly doesn’t have his body parts down so it’s hard to know if a particular part of him

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[hurts].” Without speech, “the only way we know [he’s sick] is he’s either vomiting or
got a fever,” said Peter. However, “he will try with the iPad to use some novel language
to let us know,” Alice said. She told a story about how the last time that Danny went to
the hospital to get a regular procedure and came out of the anesthesia, “he did just
everything he could to tell us he wanted to go home. ‘Off. Out. Leave. Go.’ […] He
started every kind of word to say, ‘Get me out of here,’ basically.” It is of vital
importance for children to be able to voice a pain that no other body can feel, illustrating
the limits of an entirely distributed theory of voice.

Resistance
Parents also discussed their children using Proloquo2Go to be able to say that
they wanted to pause while doing an activity, wanted to be left alone, and were
displeased about something in their environment.
“I want a break.” A few parents talked about their children using the iPad and
Proloquo2Go to indicate that they needed a break from a social situation. Sara said that
she and her family had taken Isaac’s iPad with them on a recent trip to Disneyland. “He
had a moment where it was just too much and he could tell me, ‘I want a break.’ It was
awesome, because it cut down on the tantrums, and the screaming, and the crying,” she
said. According to Kameelah, Talen was “not there yet” when it came to using his iPad
to initiate taking a break. “Now, he just screams,” she said. She thought that Talen
struggled cognitively with “understanding, in himself, ‘This is where I’m at and this is
how I communicate. OK, I’m feeling frustrated. When I’m feeling frustrated, I say, ‘I

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want a break.’” Some but not all children had mastered the use of the iPad to voice
frustration.
“Leave me alone.” Another reoccurring theme was children using the iPad and
Proloquo2Go to voice their desire to be left alone. Perri said that Cory “gets so excited”
and “feels so empowered” when he says, “I need my space.” She said he did not attempt
to say the phrase or “even have the concept before” he started using Proloquo2Go. His
use of it caused his teachers to view him differently. “That was one of the first things that
he was able to say that everyone realized he’s purposefully saying this,” she told me.
“He would find, ‘I need my space’ and gently push me away, in class. That was the time
that it kicked into the teachers. They were laughing, like, ‘Oh my gosh, yeah. He told
you he needs his space.’
For some parents, having their child express resistance in this manner was
welcomed because it was associated with “typical” behavior. Said Vanessa, “Staring late
summer, she got into the ‘Get out of my room’ thing, which is great, because that’s very
typical.” Nelson wished he could communicate with Stephanie even if she were mad at
him. “It’s just a typical conversation with a teenager,” said Nelson, “Throw a tantrum,
and go upstairs, and, ‘I’m going to listen to rock music, and I hate you, Dad.’” Marisa
offered an alternative interpretation though, saying that Stephanie found other ways to
voice resistance. Explained Marisa, “In her way, in her world, she still do. […]
Sometimes she go upstairs, put the [air conditioning], and go to bed, because she know
here is downstairs, and here the AC is freezing.” Speaking as Stephanie, Marisa
explained her daughter’s act of rebellion. “‘Because I’m going to be in my bed, blankets
and everything at night, going to be OK. So, you’re going to be proud downstairs.’”

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While it was not the same as using embodied oral speech to voice displeasure with one’s
parents, “it’s like any other child,” said Marisa. Children voiced a need for space not
only through words, but also their actions.
“I don’t like.” Parents valued AAC devices as a tool for children to express their
preferences. Donna thought that it was an “extremely important thing” for Sam to say, “I
don’t like” as well as “I like.” “If you don’t like stewed prunes, then I’m not going to
make you eat stewed prunes anymore,” she offered as an example. “I don’t really give
him those, but the ‘I don’t like’ is just, God, almost more important than the ‘I like.’”
Donna also described how Sam had used his AAC device to say that he didn’t like being
excluded from a conversation transpiring in front of him. Said Donna, “Me and my mom
one day were talking, and all of a sudden he’s like, ‘Ignore.’ We’re like, ‘Where did that
come from?’ Somehow he found in his device, ‘Ignore,’ because we were ignoring him.
He wanted to be included in the conversation.” Non-speaking children contend with
various challenges in order to give voice to their own needs for safety, relief from pain,
and urges to resist. The challenges are partly due to their speech impairments, but also
due to technological and environmental shortcomings.

A Partial Promise of Voice Output Communication Aids
The above stories from parents provide a unique case for interrogating the socially
constructed meanings of voice and its “partial promise” (Dreher, 2012). Contrary to
press reports, mere access to iDevices with AAC apps does not ensure the “full”
expression of voice. This sense of fullness also differs across families depending on their
access to embodied, objectified, and institutional cultural capital. The potential for these

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technological systems to enable voice for non-speaking children will only be partially
realized as long as various concerns are not heard.
First, as long as the media treats voice as a singular and individual entity, issues
regarding who in the household is responsible for promoting children’s voice go
unaddressed. The promise of AAC devices to support children’s voice is inseparable
from the labor of others who upkeep, administer, and moderate the technology, which
largely tends to be mothers (Naraian, 2010). Second, as long as dominant discourse
frames voice as a static entity— an object to give or unlock—then fluctuations in children
and their environment will not adequately be taken into account. For example, children
may or may not produce more speech by using the iPad and Proloquo2Go. The software
may or may not fully address their needs as their voices change and they grow into
adolescence. Voices evolve not only biologically, but also in terms of identity.
Next, as long as synthetic voice is primarily reserved for Western, English-
speaking white children, then inequality among non-speaking children from diverse
backgrounds will be reproduced. Each voice, Barthes (1991) says, has a particular
“grain,” or traces of the body. The traces of certain bodies though are rendered invisible
through synthetic speech (Kevorkian, 2006). Engineers, with particular conceptions of
what it means to talk and what “natural” speech sounds like for an “average” person,
whisper beneath every inflection of synthetic voice (Sterne, 2003b; Voskuhl, 2004). The
iPad with Proloquo2Go houses voices, and it also structures the possibilities of speech.
There is promise though in more personalized AAC systems enhanced by machine
learning, artificial intelligence, and contextual awareness (Wiegand & Patel, 2014).

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In addition, as long as professionals are the ones primarily defining terminology
around voice and AAC, then children and parents have less of a say. Therapists and
clinicians need to be more sensitive to how families from different cultural, class, and
educational backgrounds understand and name these technologies, as it can differ from
their own training or personal beliefs. Kameelah, for example, described a more open-
ended approach to referencing her son’s iPad with Proloquo2Go, searching for “the
perfect word that also leaves it open.”
Moreover, as long as AAC is seen as the primary tool of voice production for
non-speaking individuals, then there may be missed opportunities to support more
creative expressions of voice through other media (Pullin, 2011b). Parents described
their children as drawing upon a larger ecology of speech tools, including interactive
games and apps. And lastly, the promise of the iPad and Proloquo2Go as communication
aids will be unfulfilled as long as institutions are unprepared to listen. For example,
Moira had access to a mode of speech production in theory, but when she left home
without it, her local police force was wholly unprepared to handle her sudden
disappearance.

Conclusion
Curiously, contemporary news reports on voice, the iPad, and Proloquo2Go sound
strikingly similar to those articles celebrating speech-generating devices from 40 years
ago. A Wall Street Journal (1977) article on the HandiVoice characterizes the
technology as, “Offering An Electronic Voice to Vocally Impaired.” A Los Angeles
Times article on “intelligent speech prosthesis” being developed at the time at UCLA

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proclaims, “Voice Machine Designed For Speechless” (Alexander, 1978). Two years
later in the same newspaper, a profile on a local area girl’s use of the Canon
Communicator leads with the headline, “Electronic Help for the Handicapped: The
Voiceless Break Their Silence” (McLellan, 1980).
Today’s high-tech devices are potentially even more powerful means of
communication for individuals with speech disabilities than those from the early era of
personal computing. This technological progress has not been matched with greater
nuance in reporting the complexity of the social situations surrounding use of these
devices and the unrealized potential of the hardware and software. Parents construct their
own unique meanings of voice—at times bodily, performative, and political—and do so
in relation to their non-speaking child, the affordances of the speech technology, and the
often discriminatory practices of the speaking world.

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CHAPTER SIX
“YOU’VE GOTTA BE PLUGGED IN”:
DISTINCTIONS IN PARENT PARTICIPATION WITHIN
DISABILITY MEDIA WORLDS

Meryl: I had one other parent call [the iPad] “magic”…

Thomas’s mom, Daisy: For me—“magic”—I can say that. Because, see? Now
[Thomas] can tell us. Even though we’ve had this since the beginning of the school year,
we’re still finding a lot of the “wow moments.” […] You know that there’s something
there. But yeah, thank Steve Jobs for that! Can you imagine?

Meryl: Yeah, that’s thing. I guess you don’t want to use the word “revolutionary”…

Daisy: I think it is. Cause there’s the touchscreen before. But just to do that, and then
the software developers—that’s amazing.

Daisy had to correct me not once, but twice during our interview. She did want to use the
words “magic” and “revolutionary” to describe the iPad. While Daisy recognized that
touchscreen computers existed long before the debut of iPad in 2010, when combined
with Proloquo2Go, the technology was “amazing.” In addition, she did want to single
out Steve Jobs as responsible for the iPad and its continual benefits to her son’s
communication. My academic training had instilled in me a kind of skepticism regarding

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such terms and characterizations, wary of techno-utopianism and critical of the cult of
personality around industry figures like Jobs. I falsely assumed that Daisy, college-
educated and upper middle class, was similarly reluctant; instead, I had projected my
tastes on to her. “I can say that,” she told me, claiming as her own the language that I
was implicitly placing judgment upon. She had experienced first hand what she called
“wow moments,” and was still continuing to experience them. These moments provided
glimpses into “something there,” something to suggest that Thomas was comprehending
the world around him. In all, Daisy asserted that she was licensed to speak about the
iPad, Steve Jobs, and the developers of Proloquo2Go in a way that I was not.
It was a pivotal moment in my research, one that required me to reflect on the
boundary that Daisy drew between my language and hers. Before his death, Jobs,
speaking on behalf of Apple, deflected any credit for the benefits that children with
communication difficulties derived from the iPad. Wrote the Wall Street Journal in an
interview with Jobs, “‘We take no credit for this, and that’s not our intention,’ Mr. Jobs
said, adding that the emails he gets from parents resonate with him” (Valentino-DeVries,
2010, para. 7). A generous explanation for this quote would be that Jobs spoke out of
humility, and a likely explanation would be that his statement was carefully worded at the
advice of Apple’s legal team in order to distance the company from any medical liability.
As Ryan Budish (2015, para. 3) notes, “certain features are unlikely to ever exist in a
consumer wearable, unless Tim Cook wants to sell watches that require a doctor’s
prescription.”
In the interview Jobs continued, “‘Our intention is to say something is going on
here,’ and researchers should ‘take a look at this’” (Valentino-DeVries, 2010, para. 7).

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As a communication researcher, when I interpret Jobs’ charge to “take a look at this,” I
also consider his public statements as part of this. If I was to understand what the iPad
meant to parents like Daisy and how the technology was incorporated into families’ lives,
then I also needed to pay closer attention to what they thought about cultural
representations of technology, its creators, its users, and their practices. Research has yet
to explore the ways in which parents of children who use augmentative and alternative
communication (AAC) devices interpret media messages about Apple devices and mobile
technologies (Allen & Shane, 2014).
Public discourses about home computing are often reflected in the ways in which
parents talk about their experiences with technology, reconciling these ideas with their
own lived experiences and discussions shared with others in their social networks (e.g.
relatives, friends, co-workers) (Hoover, Clark, & Alters, 2004). For example, Lally
(2002) writes about how parents making sense of the personal computer at home
projected their feelings about global technology companies (which are otherwise abstract
and alienating entities) onto figures like Bill Gates. Beyond the technology sector, this
myth of the sole visionary also plays a role in public perceptions of the creative media
industries. Audiences and authors construct myths such as the “Guiding Spirit” (an
individual auteur with creative intent) and the “Powers That Be” (faceless networks and
studios with commercial interests) (Jenkins, 2013, p. 54) as a way to negotiate their
relationships with another and to media texts.
Beyond media reports explicitly about Apple, the iPad, and Proloquo2Go, I found
that parents called upon, shared, and contributed content to a broad cultural imaginary
concerning disability, parenting, and assistive technologies. Anthropologist Faye

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Ginsburg (2012) calls this space the “disability media world.” Rapp and Ginsburg (2011,
p. 381) describe this media landscape as “ranging from books to documentary work to
disability film festivals and screening series to YouTube uploads.” This world
encompasses print media, mass media, independent and grassroots media, and social
media. Many parents that I spoke with participated in the consumption, circulation, and
creation of media about parenting a child who communicates through augmentative and
alternative communication. Some of this content was specifically related to autism,
children, and technology, which was partly due to the composition of the study’s
participants, but also autism rates in the U.S. and the prevalence of media reports on
autism (Silverman, 2011).
In the pages that follow, I detail how parents of varying class and cultural
backgrounds engaged in information seeking, participated in online communities, and
viewed media representations of individuals with communication disabilities or other
marked forms of difference as a means of a inspiration, a site of resistance, and as a
lingua franca to voice frustrations. Mediated spaces may be growing more inclusive and
accepting of disability while remaining exclusive to those with more distinctive forms of
social, cultural, and economic capital. I argue that the potential of disability media
worlds to radically reconfigure American family life and systems of social support is
limited without also taking intersectionality into account and critically examining the
politics of recognition.

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Rendering Parenting through Disability Media Worlds
I first turn to the existing literature on how parents of youth with disabilities
negotiate their membership in disability media worlds.
40
Rapp and Ginsburg (2011)
contend that the stories that individuals with disabilities and their family members tell
through media worlds enable the writing of alternative cultural scripts, the appropriation
of representations, and the revision of dominant narratives about disability. These media
worlds, they write, “are crucial for building a social fund of knowledge more inclusive of
the fact of disability” (Rapp & Ginsburg, 2001, p. 551). Mediated spaces for parents of
children with disabilities to discuss publically their trials and triumphs are relatively
recent developments. Prior to the 1970s, U.S. law actively suppressed disability in
public; for example, through the enforcement of “ugly laws” that barred “unsightly
beggars” from city streets, eugenics laws that led to the institutionalization and forced
sterilization of disabled adults and children, and laws prohibiting children with
disabilities from entering public schools (Schweik, 2009).
While disability media worlds enable the circulation of positive representations of
disability and critiques of normative American family life, they also have a history of
being coded for individuals who in other ways identify with majority culture (Cole et al.,
2011; Thoreau, 2006). Print media (e.g. books, magazines) addressing individuals with
disabilities and/or their parents often assume a white, highly educated, and upper middle
class audience (Ong-Dean, 2005). For example, Bess Williamson (2012) highlights how

40
Anthropologists Ginsburg, Abu-Lughod, and Larkin (2002) use the term “media worlds” to recognize the
integral role that media play in everyday life, as well as the multiple social and cultural fields within which
media practices are situated. de Certeau (1984), in his work on textual poaching, argues that media
consumption is less about popular commodities making all consumers the same, and more about consumers
making popular commodities into something similar to their own lives. Appadurai (1996), similarly
rejecting “grand narratives” of mass media effects, highlights media as a resource that diasporic
populations use to localize “micronarratives” and reimagine their lives.

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Americans with significant physical impairments in the post-WWII era created,
consumed, and circulated newsletters such as the Toomey J Gazette. The publishers,
writers, and readers of these disability-community periodicals were relatively privileged,
pointing to more systemic issues historically structuring participation in spaces for
reimagining disability.
Among parents of youth with disabilities, it is unclear how other dimensions of
difference (e.g. race, ethnicity, class, sexuality, language, immigration status) intersect
with their participation or non-participation in disability media worlds, or if their
participation manifests in less visible or less quantifiable ways. Studies of social media
and internet use among parents of youth with disabilities frequently do not include data
on socioeconomic status (Reinke & Solheim, in press) or racial and ethnic composition
(e.g. Ammari, Morris, & Schoenebeck, 2014; Ammari & Schoenebeck, 2015). Some
admittedly oversample parents with graduate degrees (Ammari & Schoenebeck, 2015).
One content analysis of blogs maintained by “cybermothers” of children on the autism
spectrum notes that the study is limited to the extent that it represents “the expression of a
subgroup of parents with access and proficiency in technology sufficient to establish and
maintain public blogs” (Dreuth Zeman, Swanke, & Doktor, 2011, p. 37).
Issues of “access and proficiency in technology” should not be taken lightly. In
my study, I found that parents primarily took part in this disability media world in five
ways, with significant variations in participation by social class. First, the process of
seeking out media concerning the iPad and Proloquo2Go varied between more and less
privileged parents, with the former more frequently reporting looking for such
information on the internet. Second, for those parents who participated in online

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communities concerning their child’s disability or their AAC use (e.g. Facebook and
Yahoo groups), social media simultaneously enabled social and emotional support for
some while contributing to a sense of alienation for others. Third, parents spoke of
drawing hope from viewing or interacting with ordinary AAC users in the mass media or
on social media. Fourth, they also resisted comparisons to high-profile AAC users whose
experiences they felt were unrepresentative of their child’s lives. Fifth, less privileged
parents who felt particularly marginalized in their interactions with educational and
clinical professionals drew upon cultural material in the media to explain their
experiences of isolation and being misunderstood. In all, these distinctions among
parents have significant implications for the future inclusivity of disability media worlds
and the potential for parents to overcome power imbalances in social structures.

Information Seeking
In my fieldwork, a clear difference emerged between more privileged parents
(who regularly sought out media to learn new ways to help support their child’s
communication, particularly by conducting internet searches), and less privileged parents
(who preferred to support their child by gaining insights through lived experience,
scaffolded learning, and analog materials). The former tended to be highly educated and
tech-savvy, and the latter group tended to be less formally educated, less proficient in
English, and less comfortable with using technology. Tensions arose when well-meaning
professionals, belonging to the same cultural milleu as more privileged parents,
recommended the internet as a primary information resource to less privileged parents.
The internet may be a cost-effective and widely distributed approach to supplying

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caregivers with information, but in light of corresponding budgetary restrictions on social
services, this solution can reinforce class stratification by requiring all parents to mobilize
unequally distributed social and cultural capital.

“Always Looking” for Answers
Chike’s mom, Esosa, mentioned that she had seen a piece about iPads as AAC
devices on 60 Minutes. She was referring to a segment entitled “Apps for Autism” that
originally aired in the U.S. on October 23, 2011 (and is currently available online through
CBS News’ YouTube page). I asked Esosa if she thought that TV reports, such as that
one, influenced parents in any way. “Yeah,” said Esosa, “because we’re always looking
for, you know… If you see something about autism or read about it, you pick out what is
going to apply to you. If it doesn’t apply to you, or you’ve tried it, you discount it.”
Esosa counted herself among parents who are “always looking” for novel and relevant
information to help their non-speaking child, including information about the latest
technology. In an era when online information about disability diagnosis and treatments
can be highly misleading and false (Jordan, 2009), judging the accuracy of these reports
also requires a level of literacy and discernment as well.
For example, take Peter, who reported “Every once in a while, while I’ve got five
minutes at work, I’ll Google ‘new toddler apps’ and just look at them.” Instead of
searching for “apps for autism,” he had developed a better search strategy: “looking for
quality kid apps, and then I read the review and look at it and say maybe it’ll work,
maybe it won’t,” indicating a degree of media literacy. Peter also relied on
recommendations from autism forums on Facebook: “Somebody will always say my kid

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just got an iPad, what apps? Usually, I’m like ‘Got it. Got it. Ooh! Haven’t heard of
that one!’ Facebook has been great.” Said Daisy, “I just Google ‘iPad autism’ […] I just
Google all the time. Okay, what’s out there, what’s going on?” When Isaac’s teacher
suggested he use a visual schedule app on the iPod to aid his integration in mainstream
Kindergarten, Sara too turned to the internet. “I went online, I did my research,” she
said. Their responses suggest an on-going and dynamic process of more privileged
parents “doing their research” by navigating online media and interpreting content as
situationally relevant for their child.
Because they are frequently seeking out information across multiple platforms,
more privileged parents also perceive there to be a constant flow of news about non-
speaking children and technology, particularly concerning autistic youth. For example,
Sara said she had seen “all these programs on TV about these kids who were doing all
these crazy things, and look, this teacher found [Proloquo2Go].” A number of the
assistive technology specialists that I interviewed mentioned such depictions having an
impact on upper middle class parents, leading some to insist that their child be evaluated
for an iPad. An AAC coordinator (who manages a caseload in a privileged neighborhood
within a otherwise under-resourced public school district) recalled a day when ten speech
therapists in schools she worked with had parents requesting, “‘I want an iPad for my kid.
I want them to talk.’ Then you’re like, ‘Oh, where did you hear this from?’” The
coordinator asked her co-workers, “‘Do you know if there were any interviews or
anything on TV?’ Sure enough there was something that had been replayed. It was an
old interview on an old show.” The news cycle propagates stories about the miraculous
benefits of technology, stories that more privileged parents are increasingly likely to find

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and be on the lookout for. These same parents also mobilize their social and cultural
capital to request that schools provide more assistive technology support for their child.
“I don’t blame parents at all,” said the coordinator, “They just want an answer.”

Always Surrounded by “First Hand” Information
A couple of highly educated parents with whom I spoke also worked in the
special education or assistive technology field. These parents were not so much always
looking as they were always surrounded by information about assistive technology and
AAC devices. When I mentioned to Nina, a professor of special education, that I was
studying Proloquo2Go because it was the dominant player in the AAC app field, she
agreed, saying, “The media has highlighted it so much.” When she wanted to research
how to model use of the Proloquo2Go for her son, Nina said, “I started looking on
Facebook. I’m friends with AAC people [laughs] and they were like, ‘Modeling,
modeling, modeling’ and aided language stimulation and all this stuff.” Through these
social connections and her high level of medical literacy, Nina found two other helpful
websites, the blog PrAACtical AAC and the PRC company-owned AAC Language Lab
site. “I’ve used those to help me and that’s how I learned about modeling,” said Nina.
Donna thought it was “amazing that these parents will see it on maybe 20/20 or
they’ll read it in the magazine,” but she also recognized her own privileged position due
to her part-time job at a disability resource center. She noted, “I actually got to see this
stuff first hand and actually utilize it and see it. I think I was extremely lucky to be in the
right place at the right time.” In turn, Donna considered herself a human resource to
parents in her community. “Nobody’s going to tell them unless they see it on 20/20 or

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they see me at the grocery store,” she said, referring to her son’s AAC device. “I’ve been
stopped, I can’t tell you how many times, with grandmas, teachers, just wanting to know
more about it to perhaps to help out a student or a family member.”

Not “Hungry for Knowledge”
In their exploratory study of how parents of autistic youth seek information
online, Reinke and Solheim (in press) identified a main theme—“seeking is an ongoing
part of my life”—that aptly describes the more privileged parents discussed above.
Similarly, Ammari and Schoenebeck (2015) found that highly educated parents of youth
with disabilities on Facebook use the site as a way to gather experiential information.
While these studies generalize said patterns to all parents of youth on the autism spectrum
or youth with disabilities, other researchers have suggested evidence otherwise. For
example, Blackburn and Read (2005) found significant differences between U.K. parents
of higher and lower socioeconomic status in their use of the internet to obtain information
about caring for their child with a disability, citing the cost of computer equipment and
internet access as a financial barrier for low income parents.
If I had only spoken to parents who were either always looking for or always
surrounded by information through their social networks, I too might have overlooked all
of the other parents of non-speaking children who had amassed less social, cultural, and
economic capital. Less privileged parents, many of whom did not have a college degree
or were non-native English speakers, less frequently sought out mass media or turned to
the internet for information about how technology might support their child’s
communication. They also made less direct demands of school districts to provide

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technological solutions based on having encountered a relevant story in the media. Yet, it
would be a mistake to assume that just because these parents did not search for
information in the same manner as more privileged parents that they cared any less about
their children. Rather, they preferred learning how to better support their child through
hands-on experiences, print materials, and culturally-appropriate programs.
For example, David described feeling frustrated that he could not do more for
Beatriz. “I always tell everyone: her doctor, her teacher. I always tell them that my main
concern and my main interest is to learn how to communicate with her,” said David.
“I’m always trying to find ways but…I’m limited because, you know, what can I do? I
just read.” In response to his mention of reading, I asked, “Where do you find
information? Do you read it online?” “I go online,” he replied, “but I don’t…you think
I’m…?” I had made a misstep by expecting David to turn to the internet for answers,
likely because of my own class and educational background (as I had with Daisy). “Yeah
I read,” he continued, “but not like, ‘Oh, I’ll go here, and then I’m hungry for knowledge
about this type of situation.’ No.” Whereas Daisy used Google frequently and flexibly
(“I just Google all the time. Okay, what’s out there, what’s going on?”), David drew
more on tacit knowledge and less on information circulating in the media in order to help
his child. “When I talk to you,” he said to me, “I’m just talking about my experience
with this device, and the program, and the previous program that she had.”
Rebecca admitted being afraid to touch the computer, saying, “If I do something,
it’s going to disappear forever. I’m afraid of permanently screwing something up. I’m
reluctant to just tap away.” She recalled being “flummoxed” by a recent “registration for
my son online” because the print instructions she had been given did not match what

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appeared on the screen. She was unsatisfied by the response given by those in charge of
the website. “It was like, ‘I think you just have to ignore that. Just answer this.’ Just
have it be like, this does refer to that,” Rebecca protested, “If they’re going to keep
changing stuff, they need to have reference material to keep up with that.” When it came
to learning how to use Proloquo2Go, Rebecca said that her lack of comfort with
technology created a barrier between her and online resources. “I don’t like having to
look it up online to see how to do it because if you’re not ‘technologically savvy’
[gestures with air quotes], you don’t know how to look for things online, or maybe you
don’t have access to things online.” Instead, she deferred to the expertise of her husband.
“He’s really good on the computer because that’s what he does,” said Rebecca, “His
design work is on the computer.”
Instead of being required to use the internet, Rebecca preferred learning through
hands-on Proloquo2Go workshops (where I first met her) and watching another person
demonstrate. She described the ideal way to learn about Proloquo2Go, drawing an
analogy to learning a handicraft. “I do knitting and crochet,” said Rebecca, “Certain
things, you need to see somebody doing it. Seeing it static in a book sometimes doesn’t
help on certain things. Like, ‘You need to swipe this way.’” Rebecca, while she had not
attended college, had spent time at an art school after high school. While an online
instructional video might best serve a tech-savvy parent, the internet skills needed to
access that video created a barrier for Rebecca.
Like Rebecca, Vanessa also did not complete college. She similarly tended to
defer to the technological expertise of men in her life, but felt more capable handing

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computers when led through a live demonstration and could take down handwritten
notes. Vanessa explained such gender and class dynamics:
Fortunately, with [Moira’s] father and my boyfriend, with Brandon, they’re very
tech savvy, and I’m not. I’m just like, “Hey. Can you show me how to do this?”
Both of them have always been like, “Yeah. This is how you do it.” Then I write
it down, and I’m like, “All right, cool!” and then I pick it up. I’m not tech savvy.
If someone explains it to me, and then if I write it down and I have it for
reference, then I’m good.
Vanessa placed the blame on herself when having difficulty in navigating the iPad,
internalizing the expectation that because the technology was so “user-friendly” (often
gendered as being “so easy even your mom can use it”), any problems were due to her
own over thinking. Said Vanessa, “There have been times where I’m like, ‘How do you
do this?’ ‘I wish I could just do this,’ and then it does it. […] They make [the iPad] so
user‑friendly, that you make it more complicated than it actually is.”
Beyond computer-based resources, less privileged parents found libraries and
parent support groups in their local community helpful for learning more about assistive
technologies for communication. The library was the first stop for Marisa, Stephanie’s
mom, when her daughter was diagnosed with autism. Marisa said that she didn’t feel
comfortable with technology, that even their home computer printer was “too much
technology.” When Stephanie was diagnosed, “I don’t know how to teach my daughter
to speak,” said Marisa. “I went to the library and get sign language books. I start to learn
the basic like, ‘please,’ ‘thank you,’ ‘more.’ I start to teach Stephanie, but was not
enough.”

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Marisa and Nelson sought the wisdom of others to better equip themselves. They
joined a nearby support group for parents of autistic children, which was where they first
learned about Proloquo2Go. Said Nelson, “They give special seminars, and different
public speakers come out. This particular time, there was one on the iPad.” Karun, who
was involved in her local Armenian church and cultural organization, mentioned that a
regional support group specifically for Armenian parents of autistic children “helped me
a lot.” Through the group, she was able to connect with another parents of Armenian
heritage. “She was a psychologist and she had a child with autism,” said Karun, “She
helped me a lot. Almost the same age, her boy and my boy.” Less privileged parents
were not “hungry for knowledge” in the sense that they consumed mass amounts of
information from TV and the internet, but they actively sought out alternative channels
that best fit their lives and their cultural background.
More privileged parents also mentioned local groups as being helpful resources
for information about using the iPad for AAC, but tended to mention such organizations
in the context of their online presence. For example, Alice and Peter said that their local
regional center’s volunteer arm, called Coastal Coalition, had an active Facebook page.
Without a Facebook account though, one would be disconnected from the groups’ in-
person events. “A lot of times you have to make sure that you’re ‘liking’ these people on
Facebook or that you’re somehow plugged into them some other way,” said Alice, “You
have to initiate and after that you get stuff.” Peter concurred, noting, “I do wish there
was a clearinghouse for data or information. There is not…You’ve gotta be plugged in.”
Being “plugged in” involves more than just technical access to the internet and parents’

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independent initiative; it requires access to cultural capital, which is bound to our
collective social structures.

Case Study: Online Video Tutorials
Between these two different groups, it becomes clear that the internet is not a one-
size-fits-all solution for informing parents about how they might best support their child’s
communication through assistive technology. These distinctions were particularly
evident when it came to whether or not parents watched online video tutorials for
Proloquo2Go. Tech-savvy parents tended to find these helpful. Said Anne, “We watched
when we were researching [Proloquo2Go]. We watched a couple of YouTube videos.”
Rachel and Caren, the assistive technology specialists that I observed, frequently
recommended these tutorials and the AssistiveWare website to parents. Less privileged
parents, however, were not as receptive as more privileged parents to being directed to
the internet. When I asked David if he had visited the Proloquo2Go website, he replied,
“I’m gonna be honest with you, I haven’t. And Rachel gave me a website, and she told
me there is a lot of resources on their website, but I haven’t.”
Even though David had reliable internet access at home, using the web to watch
tutorial videos was a relatively low priority. Similarly, when Rachel asked Karun if she’d
been watching how-to videos on the Proloquo2Go site, Karun said no. “I’ve been busy
with [Pargev’s] IEP, and I’m starting a new business with scarves and jewelry.”
Something that came up in my later interview with Karun made me recall this exchange
with Rachel. During the interview, Karun told me about how she first heard about
Proloquo2Go from Pargev’s teacher, shortly after fleeing Syria and seeking asylum in

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California. The teacher “kept on telling me you have to download it. You have to buy
iPad,” said Karun, “But we couldn’t buy it because we came from the war with no
money.” Upper middle class professionals seemed out of touch with the realities of
working class households.
Teachers and therapists seemed to be disappointed in working class parents for
seemingly slacking, not fully understanding that their cultural values, habits, and
preferences around information seeking were different from their own. For example,
after Marisa admitted to Rachel that she didn’t feel comfortable navigating Proloquo2Go
on the iPad, Rachel did not seem to completely grasp Marisa’s reticence. Said Rachel, a
bit dismissively, “You have an iPhone, so you can do this.” Rachel then used a pen and
spare sheet of paper to write down the URL for the AssistiveWare website, suggesting
that Stephanie’s parents turn there for “information and webinars” and “email any
questions” to the company directly, assuming parents would be comfortable engaging in
such a practice. Marisa seemed unsatisfied with this offer, and asked Rachel if she could
possibly visit their home again to work one-on-one with the family. With a recently
tightened Rossmore Center budget though that would limit the number of hours allotted
for at-home technology training sessions, Rachel said that was unlikely. A website was
all that she had to offer, a resource that was insufficient for families that needed her
highly skilled support the most.

Participation in Online Communities
Information and social support tend to be the primary motives for parents to go
online (Plantin & Daneback, 2009). While less privileged parents reported being less

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inclined than more privileged parents to seek out information on the internet, both found
online communities to provide opportunities for social and emotional support. Noted
Vanessa, “I’m friends with quite a few moms on Facebook that I’ve never met in actual
life, but we’ve become close over the years and support each other.” Some mothers
discussed how online communities provided spaces for alternative conceptions of
mothering a child with a disability; others found that they also reinforced unrealistic
expectations. While prior work has focused primarily on the organization of online
communities for parents of children with disabilities by geography or by the specific
disability (Ammari, Morris, & Schoenebeck, 2014), parents also discussed the pros and
cons of online groups that specifically catered to parents of children using Proloquo2Go
and other AAC platforms.

Social and Emotional Support
Perri gave one of the most passionate endorsements for Facebook that I have ever
heard. Referring to the Facebook group for parents of children with one of her child’s
multiple rare disorders, she said, “I mean that’s what Facebook was meant to be. Really.
I’m not a big Facebook user but that has been instrumental in our lives to connect with
the world of children with [rare disorder]. It’s been amazing.” Ammari and Schoenebeck
(2015) found that parents of children with rare conditions were especially likely to take
part in online communities by consuming, sharing, and circulating content. Sometimes,
the sharing of information about Proloquo2Go and providing social and emotional
support on Facebook were inherently entwined for Perri. She explained,

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Cory has like a little twin guy who lives in Missouri who looks very much like
him. I guess is one of three children that has his genetic makeup of the way [that
rare disorder has affected Cory]. I saw that she posted last night something about
Proloquo, so I’m very interested in talking to his mom about it as well and have to
see how Parker is using it. You know, how it’s going with him. I was sad to see
him in a wheelchair because I know he was walking. I have to figure that out.
Understand that more.
Facebook and other social media may provide a particularly useful outlet for
geographically dispersed parents of children with rare conditions to build meaningful
relationships.
Researchers have also noted that parents of children with disabilities engage with
parents both through their profile pages as well as private groups on Facebook (Ammari,
Morris, & Schoenebeck, 2014). Beyond these components, Facebook’s messaging
function also serves parents to develop intimate one-on-one relationships for social
support. Vanessa discussed developing a friendship with another parent independent of a
formal group, but cultivated through a preexisting social connection. Noted Vanessa,
“There is a mom that I’ve only met once that lives in Cheyenne and she’s friends with
one of my childhood friends and her son and Moira have very similar challenges.” In a
more private corner of the social media site, “I’m able to message her on Facebook and
really get down to how it’s affecting me and she totally gets it,” said Vanessa. Parents
build intimacy across public forms, semi-private groups, and private messaging on
Facebook.
Having moved, Vanessa and Moira were still to establish themselves in their

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community. Most of the moms that Vanessa was currently meeting locally did not “get”
her. Said Vanessa, “Have not connected with moms in [Moira’s] classrooms, which is a
bit boggling. It could just be because we are so overextended and overwhelmed.” In
comparison, in their old town, “I definitely had a network of moms that I’ve connected
with over the years through Moira’s services, meeting moms in the waiting rooms.”
Vanessa disliked the support groups she encountered in her new city because they were
“all about strategies, networking, schools and special education issues and special
education law, IEPs and various therapies […] it’s always strategizing.” She had yet to
find a support group “where I can really be able to express my fears and anxieties” and
“that really talks about us.” Vanessa opened up to me about these feelings:
I have been starting to go through a thing lately where I’m feeling a bit resentful
of how much this has consumed my life and I feel I’m having to try to re‑establish
where my identity is in this because literally, my entire life is consumed with her
care. When she’s at school, I’m on the phone with regional center and school and
texting with her teacher, scheduling her appointments and taking her to
appointments, meeting with the behaviorists, working on her programs with the
behaviorists and then, developing my own things that I’m trying to work with her
on. I stopped working. I couldn’t manage working and her needs.
Vanessa longed for a group that let her explore her identity outside of the role of Moira’s
personal special education strategist. Her social ties to other mothers over Facebook
were her most secure ones, as Facebook provided her with the therapeutic space that she
did not find among the parent support groups in her new geographic community.

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Social Comparison
Vanessa sought to connect with other mothers in ways that could help in releasing
the pressures of the intensive mothering/warrior-hero paradigm. Hays (1996) describes
intensive mothering as a contemporary child-rearing ideology in which “good mothers”
are expected to self-sacrifice and prioritize the needs of their children above their own
personal and professional interests. In line with Ong-Dean’s (2005, 2009) argument that
mothers (especially white, upper-middle class ones) of children with disabilities are
expected to be on constant guard against violations of their child’s educational rights,
Sousa (2011) identifies a subcategory of the good mother archetype, that of the “warrior-
hero.” Such mothers, Sousa (p. 220) writes, wage “battle against social and political
forces to gain medical and educational interventions for their children despite the high
personal and financial costs to themselves and their families.” Esosa described
encountering such an intensive, warrior-hero mother online:
There’s one on that Facebook group that we belong to. Somebody posted, it’s this
mom whose son was autistic and the doctors basically said, “This is how it’s
going to be. Forget about it.” She noticed that he liked looking at glass. She
used to surround him with glasses and she would fill them with water. Now he’s
studying and he’s in college doing astrophysics or something like that.
Not only did this mother resist the doctors’ classification of her son, according to Esosa,
but she helped him to supersede academic expectations of typically developing children
as well. This encounter on Facebook was an opportunity for Esosa reflect on her own
parenting efforts. “When I read that,” said Esosa, “I thought, instead of fighting

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[Chike’s] stimming, I should figure out how to, like this mom did, she kind of directed it
somehow and it turned out positive.”
Yet, Esosa also recognized the inherent challenges in actually achieving that goal,
and the futility of social comparison. While Esosa had a live-at-home nanny from
Mexico and her husband to assist her, she also worked full-time and was raising four
children in total. “I don’t know how many other kids she had,” said Esosa, referring to
the mother in her Facebook group, but “really, if you’re going to be successful with a
child like this, you have to drop everything and give up to be the center of your life,
which you can’t really do.” Not only was this ideal mother devoted around the clock,
explained Esosa, but she would also have to be creative, flexible, and patient.
It should be noted that these social comparisons with other mothers were not
exclusive to online spaces. When discussing ways she learned new things about assistive
technology, Rebecca brought up a mother of another non-speaking autistic child in
Kevin’s afterschool peer group. As part of a learning program she had developed herself,
the mother was assisting her son in using the iPad to communicate (not through
Proloquo2Go). “She’s got a little wireless keyboard and she types out a question,” said
Rebecca, “That’s opened up the door for her son to be more interactive with the peers in
our group.” Rebecca admired the other mother for being “very hands on,” while
recognizing that the woman’s success was partly due to her accumulated cultural capital.
Said Rebecca, “She’s also got a doctor background so she’s very sophisticated, very
educated. Her husband’s a heart specialist. They have a very educated background and
so she’s able to look at things in a different way and maybe be more pragmatic.”
Rebecca was not resentful, but recognized that upper middle class mothers tend to have

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more resources and interest, as Ong-Dean (2005, p. 146) writes, “not only in improving
their children’s knowledge and skills but also in intervening in the institutional processes
for evaluating their children’s abilities and accommodating their needs.”

Device-Based Groups
In their study of how parents of children with disabilities use social media for
information gathering and social support, Ammari, Morris, and Schoenebeck (2014)
classified the social media sites parents tended to visit into two groups: geographically-
based (grouping parents according to location) and care-based (grouping parents
according to their child’s condition). A number of parents in my research though also
mentioned joining official Facebook groups for parents whose children used
Proloquo2Go. Said Nina, “There’s a Proloquo2Go for parents group on Facebook, and
that was very cool because people take screen shots. […] I remember in one of my
workshops that I gave, I saved some of those screen shots.” These device-based groups,
like those for parents of Proloquo2Go users, are distinct from geographically-based and
care-based groups, as parents may be geographically dispersed as well as caring for
children with a variety of conditions that impact their ability to produce oral speech as
opposed to a single diagnosis.
It seemed to me that Anne could have benefitted from belonging to a device-
based group. She mentioned feeling anxious about transitioning her son from using
American Sign Language as his primary form of AAC to the iPad and Proloquo2Go. Her
anxiety partly stemmed from feeling as though she had no other parents to identify with,
besides her husband. “We’ve never met anybody else in exactly the same position, that

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isn’t deaf, but was raised using sign language, but then had to transition [to using an AAC
device instead of sign language],” said Anne. In her local school community, Anne could
not talk about communication aids with other parents because her son’s classmates were
Deaf and did not use an AAC device.
Anne was in a double bind though, as she was also currently dissatisfied with the
current care-based Facebook group to which she belonged. While “there’s a Facebook
group of kids with [rare disorder],” she said, it “just isn’t that helpful” because none of
the children also used AAC. “Most of the kids, we’ve talked to their parents, they can
talk, so it’s not a thing. They have other issues,” said Anne. She made a comparison to
parents whose child has a more common developmental disability, and commented on
their sense of group membership. “It’s just so hard,” she said, “because his thing isn’t
Down Syndrome or something, where there’s this huge community of people.” While
the Facebook group for parents of children with her son’s rare disorder provided some
form of belonging, Anne was simultaneously an outsider from it due to her son’s
communication needs.
Device-based groups, however, can also have their drawbacks. While Nina
appreciated the utility of the Proloquo2Go for parents Facebook group as an information
exchange, Peter found it and other existing device-based groups to inherently prioritize
the interests of the company over the interests of parents. Noted Peter, “I do wish that
each app, like Words for Life and Proloquo, would have a user group that was a little less
commercial, because it’s always like, ‘Go on our site,’ but they obviously edit and
everything like that.” Instead, he wished there were a more grassroots device-based
group that “was a little more free‑flowing forum so parents could say, by the way, don’t

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forget you can do this.” Even less commercial device-based groups presented problems.
Some parents perceived there to be a base level of technological literacy with AAC
devices required to take part. Explained Perri,
My friend, Kiara, has a son, Oskar, who has [rare syndrome]. She has added me
to the Yahoo group of the communication device thing for [rare syndrome], and I
haven’t spent enough time on there. I’m trying to get over the hump myself
because I know it doesn’t matter whatever feedback I have from other parents: I
still have to learn it and he also has to learn it. But once we’re in the groove, I’m
going to, definitely.
While these device-based communities (which can also overlap with geographically-
based and care-based groups) might be imagined as a resource for helping parents like
Perri “get over the hump,” novices may feel discouraged from participating, even
peripherally.

Information and Inspiration from Ordinary People in the Media
Across socioeconomic status, parents discussed the value of viewing non-fictional
media representations of ordinary people who use augmentative and alternative
communication systems. These individuals fell into two groups: “real” AAC users
around the child’s age and “role model” teen and adult AAC users. Depictions featuring
these people provided parents with useful advice as well as a sense of hope. Personal
experiences and anecdotes can be particularly compelling for parents, even more so than
empirical evidence (Mackintosh, Myers, & Goin-Kochel, 2005). “Those YouTube
videos, the documentaries,” said Nina, “That’s now where my frame of reference is.

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Those are my sources of information and inspiration at the same time.” These depictions
though may also have negative consequences, as they potentially give parents
(particularly less privileged ones) a sense of false hope by providing little transparency
about the economic, social, and cultural resources behind such success stories.

Real Children
There has been a historical shift in how, where, and how widely information
about new assistive technologies is disseminated and presented publically (Ott, 2002).
Assistive devices have been on display through some kind of “exhibition” throughout the
twentieth and twenty-first centuries—from world’s fairs, to news reports, to YouTube.
The ubiquity of user-generated videos demonstrating AAC devices was highlighted in
Sharon Draper’s (2012) popular young adult book, Out of My Mind. As of February
2015, the novel has spent over a year on the New York Times Best Sellers list for
children’s middle grade books.
41
The story centers on Melody, a non-speaking fifth
grade girl with cerebral palsy, synesthesia, and a photographic memory. At one point in
the book, Melody goes online to research communication devices. Initially, Melody’s
search is discouraging: the AAC devices she finds are too clunky and complex for her
liking. Melody eventually discovers a device called the Medi-Talker that at least seems
promising in images on the website.
She then watches a video clip of another child using the Medi-Talker. Narrates
Melody, “I watch an online video of a boy about my age using one, and even though he
clearly has no voice of his own, this little box lets him tell all the details of his recent
birthday party!” (Draper, p. 129). Compared to static, soundless pictures of the other

41
http://www.nytimes.com/best-sellers-books/childrens-middle-grade/list.html

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AAC devices, the online video of the Medi-Talker provides Melody with a figure to
identify with (“a boy about my age”) as well as to aspire towards (a child recognized by
his peers at a birthday party, a degree of social acceptance that has been elusive to
Melody). This turning point in Draper’s novel underscores the potency of YouTube
videos to represent AAC devices in use, enabling potential users and their parents to
imagine benefitting from the technology in a similar manner.
Many parents found it beneficial to observe “real” children (filmed by
professionals or by their own parents) using the iPad and Proloquo2Go. In fact, Daisy
said that viewing parent-posted videos of their children using the iPad and Proloquo2Go
was the main reason she visited YouTube. “You go to YouTube, and they actually show
you how they’re using this,” she said of these home movies. “Because these are real
therapies happening. I guess the parents are recording it. […] Parents are excited because
their kid is talking for the first time.” Anne found Proloquo2Go in an online search for
an AAC system for the iPad that seemed age-appropriate for her son. Said Anne,
“Basically, ‘iPad speaking programs’ is what we Googled, and then there were a couple
of them and the Proloquo seemed to be the one recommended for our age of child.” Her
and her husband were finally sold on Proloquo2Go when they saw depictions of other
elementary school-age children using it. She explained, “Then we saw some videos of
kids, his age using it. We could visualize how this would actually work.” Anne
appreciated being able to see her child in other parents’ user-generated videos.
Nina was particularly inspired by YouTube videos that featured children
communicating through a method known as Rapid Prompting Method (RPM) and a
documentary she had seen on HBO on the topic entitled A Mother’s Courage: Talking

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Back to Autism (Ericsdottir & Fridriksson, 2010).
42
Nina called the movie “very eye-
opening. That’s what gave me hope. I saw these kids that may have been considered to
have severe behaviors, but they were so bright, so intelligent, playing the stock market,
reading these amazing books.” She wanted to be able to tap into what Raul knew but
could not communicate, and RPM offered a potential solution. “I don’t want to give up
hope,” said Nina, dreams that included activities such as stock investment that are
associated with a more upper middle class milleu.
Segments from news magazine programs such as 20/20 and 60 Minutes featuring
young autistic users of AAC were particularly memorable for a number of parents. In the
middle of my interview with Stephanie’s parents, her father, Nelson, asked me, “Have
you seen a video called the ‘Most Amazing Story’ about a child with autism?” One of
Stephanie’s therapists had shown it to him, and he in turn shared it with all of his
Facebook friends. One friend—the wife of a co-worker who also happened to be a
behavioral therapist and mother of an autistic girl—sent him “some other videos to
watch. And I was like, ‘Wow, OK.’” Enthusiastically, Nelson hopped from the dining
room table to the nearby desktop computer to show me the clip. He opened a web
browser and pulled up a YouTube video of 20/20’s story on Carly Fleishmann, an
adolescent, non-speaking autistic girl who spent much of her young life without a means
of communication. The video began with the following dramatic introduction from
anchor John Stossel:
Now, what may be the most remarkable coming out event we’ve ever seen. A
little girl is unable to speak a word or connect to the world around her in any way.
Or so everyone thought until she turned 11, and suddenly, something remarkable

42
Some researchers have argued though that RPM lacks scientific validation (Tostanoski et al., 2014).

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happened. ABC’s John McKenzie, has the story of a girl breaking out of her own
body.
Nelson re-watched the segment, rapt. “When I saw the video, and I think as far as for my
husband also,” said Marisa, “we have hope one day Stephanie type something to say,
‘I’m here. I hear you.’” Karun had a similar experience viewing the “Apps for Autism”
segment from 60 Minutes, which a relative had recorded for her to watch. She recalled
the segment featuring teenagers who unexpectedly began to communicate by typing on
an iPad: “When the child showed the interest or started to type suddenly. Suddenly, one
of them wasn’t verbal, wasn’t communicating. Suddenly this iPad helped him.” That
Karun repeatedly mentioned the rapid development of the child’s communication with
the iPad was in part related to her hope that Pargev would do the same. Speaking of a
young non-speaking man featured in the 60 Minutes piece, she said, “It came from the
child. I don’t know. I don’t want to wait for Pargev one day just to come up from
inside.”
While parents spoke passionately about these inspirational stories, they might also
negatively impact parents. Allen and Shane (2014) raise concerns that media reports
about the iPad as a miracle cure for non-speaking autistic children are misleading and can
potentially heighten parental stress. One AAC specialist I spoke to was very concerned
that parents were being misled by these news reports. “In the media, they’re stressing,
‘Oh, my kid has autism. I’ve never heard them before. I threw an iPad in front of them
and all of a sudden they’re telling stories and writing books,’” she said, “Maybe one out
of how many kids will that happen to?” The AAC specialist felt that parents were not
getting the full story. To her, these news reports accelerated the timeline of children’s

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progress and obscured the sustained work of teachers, therapists, and parents that led to a
“sudden” change in the child’s communication.

Role Models
Besides connecting with media that spoke to their child’s communication needs at
present, a number of parents also mentioned the importance of media that reflected the
experiences of older AAC users and those on the autism spectrum. Social media, books,
news reports, and documentaries featuring these role models enabled parents to feel
better prepared for their child’s uncertain future. For example, Nina mentioned seeing
news reports (“I don’t know if it was 20/20 or CNN”) a few years earlier about
Proloquo2Go and “how it’s opening doors for adults and teenagers with autism who are
mostly non-verbal.” She was inspired and recalled thinking, “‘Gosh! Raul can do this. I
think [Proloquo2Go] would be great for him.’” She also raved about a documentary that
featured two non-speaking autistic men (Wretches & Jabberers) and a few memoirs
written by non-speaking autistic youth (Ido in Autismland, Carly’s Voice, The Reason I
Jump). “Those are all people who are role models for my son,” said Nina. “I’ve been
focusing less on speech and more on communication.” While Raul had spent significant
time in therapy setting oral speech production as a goal, these public figures were helping
Nina to realize that a singular focus on verbalization was detracting from sustained
efforts to support her young son’s lifelong expression.
Vanessa felt that she wasn’t getting the full picture, however, through these
portrayals of supposed role models. During our interview, I noticed Carly’s Voice on
Vanessa’s living room bookshelf and asked what she thought of the book. “I haven’t

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finished that actually,” she told me, “I started it, and I’m like, ‘All right. This is our
story.’” Yet, the more Vanessa read, the more she realized that Carly’s story was not
quite their story and the book could not provide all of the answers Vanessa was seeking.
“I want to know, how did they get to the point of [Carly] being able to fully express her
experience and perspective?” asked Vanessa. Moira was not at that point, yet. “There
are times where she’ll just start crying, and I have no idea what is going on. I’m trying to
support her, and it seems to upset her more. I feel totally, I don’t know, not useless, but
I’m at a loss,” explained Vanessa. “No one has been able to answer that question for me
[…] of, ‘How do we teach [Moira] to get to that point?’”
In the meanwhile, Vanessa was focused on preparing for Moira’s future, her
independence, and their eventual separation. “Everything I do with her, every
interaction, everything I want to teach her is always with her later years in mind,” said
Vanessa. Part of this preparation involved following Facebook pages (e.g. Thinking
Person’s Guide to Autism) and reading blogs written by adults on the autism spectrum.
These resources had been “really awesome because […] I’m always thinking about her
adulthood and her impending adolescence. To be able to get those perspectives is really
great.” These media encounters served an additional role in that they also shaped
Vanessa’s political positioning towards disability and her daughter’s experiences of
disability. The self-advocacy of autistic adults “really helped me a lot to sort through
things. It’s a really interesting movement of people in the autism population that are
saying like, ‘I’m not damaged. I don’t need to be fixed.’” Said Vanessa, “I follow a
group on Facebook, that’s a page that is operated by three people with autism. They
create all these…they’re not ‘memes’ if its all words, is it? When they just do an image

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with the phrase? I don’t know. But they always say, ‘I am autistic.’” Parents like
Vanessa and Nina sought out real-life adult and teenage role models for their non-
speaking autistic children, and in doing so, also learned about themselves, the kind of
parents they aspired to be, and the futures they wanted to their child and our society.

Dissociation with Famous Figures
When I describe my research to those who are not well-versed in augmentative
and alternative communication, I find that making a brief reference to Stephen Hawking
or the late Roger Ebert helps others understand what I am talking about when I refer to an
“AAC device” or a “non-speaking individual.” Yet, these men do not represent all AAC
users. Hawking and Ebert are white, heterosexual, cisgender, English-speaking, college-
educated men. Their life stories follow similar plots: after attaining great success, these
men lost their speech due to an acquired disability. Their cognition was not impacted,
and their status as authority figures never wavered. In fact, these men gained further
reverence as poetic, inspirational icons through their use of an AAC device. Though they
use alternative means of communication, audiences around the world revere their words.
Parents made reference to these individuals not to draw parallels to their children,
but rather, to contrast these men’s experiences with those of their child. “I think that
Stephen Hawking uses the kind of thing like Sam uses, that type of device,” said Sam’s
mom, Donna. She emphasized that while Sam and Hawking shared an inability to
produce embodied oral speech, they had entirely different medical conditions and
cognitive abilities. While Hawking has “got the language,” Sam “doesn’t have
language,” said Donna—at least not at the moment. “[Sam’s] getting it, but that’s the

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whole thing,” said Donna, “the whole thing” referring to the key distinction between her
son and Hawking. “[Sam] needs to learn language from the ground up, just like a four
year-old or whatever,” whereas with Hawking, “the guy’s brain is fine. His body is just
betraying him,” she explained.
Eric’s mom, Anne, also brought up a famous figure whose use of an AAC system
was quite different than that of her son. She had been talking about feeling as though she
had no reference point for choosing a synthetic voice that Eric could use with
Proloquo2Go (see Chapter 5). Eric had never spoken before, so her and her husband
chose the default boy voice on the app. In comparison, before requiring an AAC system
in order to talk, Roger Ebert had spent many decades speaking as a movie critic and co-
host of the TV show, At the Movies. With “Roger Ebert, they had so many recordings of
his own voice that he was able to use his own voice,” said Anne, referring to Ebert’s
custom-made synthetic voice.
43

Interestingly, as a way to describe Eric’s particular communication needs, Anne
turned away from Roger Ebert and towards the Oscar-winning film The Piano (Chapman
& Campion, 1993). The movie centers around Ada McGrath (played by Holly Hunter),
who is mute and communicates her feelings, needs, and desires through various modes:
piano playing, sign language, and writing with a pencil and pad of paper that she wears
hung around her neck. Said Anne, “As [Eric] gets better at writing, I’m wondering if
eventually, this is silly, but maybe like [an iPad] stylus or like…in The Piano. She had
that little pad of paper around her and just could write.” Like Ada, Eric sometimes used a
pencil and paper as part of his AAC system, deploying different communication forms

43
Ultimately, Ebert chose to speak in everyday conversation using a pre-made synthetic voice (Apple’s
“Alex”) instead of the one made custom for him, which he reserved for recording movie reviews (Ebert,
2011).

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depending on the context. “We didn’t understand him,” said Anne, “It was just faster for
him to write it down, and hand it over.” While Hawking and Ebert are the most famous
people to speak through a voice output communication aid, they do not speak to Sam’s or
Eric’s experiences in the eyes of their parents.

Mass Media and the Social Language of Special Education
Cultural material depicting AAC and AAC users, while far from widespread,
appears sporadically in the US mass media. For example, a parent does not need to have
obtained an advanced degree to know who Stephen Hawking is. There is an entire
Wikipedia page devoted to “Stephen Hawking in popular culture,” noting Hawking’s
appearances as himself (The Big Bang Theory), in cartoon form (The Simpsons,
Futurama), portrayed by an actor (The Theory of Everything), and countless other
references in mass media.
44
In particular, less privileged parents—largely isolated from
the social language of special education and assistive technology shared by professionals
and more privileged parents (Ong-Dean, 2009)—used mass media and popular culture as
alternatives to this language, drawing on what Carey (1989, p. 28) termed a “publicly
available stock of symbols.” Parents called upon these symbols in two key ways: one, as
a way to grasp clinical understandings of their child’s disability, and second, to talk about
their frustrations with institutional hierarchies.

Clinical Understandings
On multiple levels, Nelson’s experiences with film informed his understanding of
his daughter’s autism. Without a college degree, Nelson had spent a number of years in

44
http://en.wikipedia.org/wiki/Stephen_Hawking_in_popular_culture

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Southern California doing unglamorous film production work for ten hours a day, six
days a week. He currently held a part-time job as a photographer, which both generated
additional income and allowed him to stay connected with his passion for film. His
enthusiasm for the cinematic arts, and particularly the genre of science fiction, was
integrated into his understanding of how Stephanie’s autism shaped her daily life:
I look back, and I saw the Rain Man movie with Dustin Hoffman and Forrest
Gump. It’s an amazing movie. I saw this show called Alphas. […] There was a
kid who was autistic, but he could see radio waves and sound waves and internet
with the spectrum. And I was like, “Man, I wonder if my little girl sees stuff like
that.”
These narratives all feature characters whose autism endows them with enhanced
abilities. In fact, with wonder and appreciation, Nelson described autistic individuals as
“real X-Men” based on what he had learned about a possible explanation for some of
Stephanie’s behaviors:
For a long time she would never make eye contact. Until somebody explained to
me, “You’re freaking her out. She just doesn’t see you. She sees everything.”
I’m like, “You mean like in high definition?” And he goes, “Yeah, 24 frames per
second.” It clicked in my head. You know what? People got sick. This last
movie that came out in high definition, HFR [high frame rate] or 3, 4D or
whatever. They have this new format that people were actually getting dizzy and
nauseated, because if you see your hand in front of you, if you put it here,
everything else is fuzzy back here. And if you start going out, then you focus
back there, the depth of field changes. I don’t know if she sees everything the

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same, you know? Like, if you see that in too much high definition, your brain
is…it’s being overwhelmed, over stimulated. They do the spins, they jump.
They’re trying to sooth, though. Wow. It’s a trip. It’s a real trip.
No explanation for Stephanie’s unique way of processing sensory input “clicked” for
Nelson until he thought about it in terms of metaphors with which he was already
familiar—film, movie cameras, and audience experiences.

Voicing Frustration
Nelson’s wife, Marisa, spoke about how the 20/20 piece on Carly Fleishmann
made her feel connected to a broader community of parents. “When I saw that one,” she
said, “it’s like OK, I’m not the only one.” Marisa explained the root of her isolation.
“Because sometime we feel alone. Because I saw that—the district, they’re professional.
And they have masters. They have doctors’ degrees, but they don’t have a kid like
Stephanie. They miss day-by-day.” While Stephanie’s clinicians and teachers claimed
expertise through their graduate degrees, Marisa did not have a college education. She
could not relate to them on the basis of a shared milleu, and they could not connect to her
with respect to raising a minimally speaking autistic child. Their class-based
condescension made Marisa feel less than. While the “Most Amazing Story” video did
not alter the broader imbalance of power and authority between Marisa and the school
district, it did provide an alternative space for Marisa to feel dignified in her daily
interactions.
David also drew upon media texts to highlight what he perceived as a gap
between his understanding of Beatriz’ AAC needs and those of her teachers and speech

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therapists. While they had recommended that Beatriz use Proloquo2Go on the iPad, he
felt that the system was too complicated for her to navigate. He poetically described the
haphazard layout of the digital app in analog terms. “It is like when you throw word
cards on the floor,” he said, gesturing to the carpet, “and, what you want, it is right there,
but you need to find the word. And I know she can find it, but it won’t be that easy
because of the way they are.” He felt that Proloquo2Go was making it even more
difficult for Beatriz to communicate her needs. Said David, “It requires the kids to have
some ability in English, like forming sentences. Her condition—mental retardation—
even though it’s not severe, but she has difficulty trying to form sentences.”
He compared and contrasted Beatriz’s AAC system to those of two media figures:
Hawking and the cinematic portrayal of journalist Jean-Dominique Bauby in the film The
Diving Bell and the Butterfly (Kennedy, Kilik, & Schnabel, 2007).
45
As a young,
intellectually disabled, first-generation Latina from a working class family, Beatriz has
very little in common with Stephen Hawking besides the fact that both use an AAC
device to produce speech. David drew on his understanding of Hawking’s intellectual
pedigree to describe someone for whom using a system like Proloquo2Go would be
relatively easy. “I seen the guy, this scientist guy, I don’t remember his name. He’s
very, very intelligent. The one who’s studying the stars,” said David. “Stephen
Hawking?” I asked. “Uh huh!” he continued,
You know the college guys, they are programming the machine for him to
communicate just by looking at it! Just by looking at the screen, whatever his
pupil is looking at is a word, and then the machine is repeating the word for him.

45
He initially was not able to identify Hawking or Bauby by name, but confirmed these references through
my follow up questions.

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[…] For him it is easier because he is scientist. He can form phrases. He can
solve an equation. He can do that because he had the knowledge before. But for
Beatriz, it’s gonna be hard.
David pointed out that Hawking not only had a masterful grasp of the English language
before needing to use an AAC system, but Hawking also had a pre-existing network of
social and technical support (see Mialet, 2012). David felt as though the professionals
working with Beatriz had not adequately scaffolded the complicated app for her; she
might as well have been using Hawking’s device to communicate.
As a point of comparison, David referred to a much simpler, low-tech AAC
system that he had seen once in a film that, upon description, sounded much like The
Diving Bell and the Butterfly, though David could not confirm the title.
I watch a movie about this guy who had an accident and he wasn’t moving at all,
but I think he was a writer. I don’t remember her—or was it his?—boyfriend
helped him to write the book. And he say, “I’ll show you the alphabet. Every
time a letter of your liking shows up, blink twice.” And then after three letters,
the girl or butterfly, she knows, she can guess the word. And then that’s how she
helped the guy to write the book. See? They communicate just by blinking the
eyes. So if they can do it by that, why not something else?
David used the language of media to describe what is known among speech-language
pathologists as partner assisted scanning. A better AAC system for Beatriz, David
thought, was somewhere between this and Hawking’s device. He was not able to use
technical, medical, or clinical terms to voice his frustrations, but representations of AAC
and AAC users in the mass media provided him with material to do so.

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Like Marisa, there are limits to the extent to which David can draw on his
experiences with media and in everyday life in order to improve his child’s speech
services. In our discussions, David frequently qualified his thoughts on Beatriz’ AAC
system (with these statements perhaps shaped in some way by David’s perceptions of my
own qualifications and education.) “I’m not a specialist in this type of devices or
programs or software. I’m not a specialist,” he repeated. “This is just my point-of-view,
according to my needs and according to Beatriz’ needs.” He understood that the
dominant culture did not lend much credence to the tacit knowledge he gained from his
lived experiences, compared to the codified knowledge one obtains through multiple
degrees. To David, Beatriz’ school did not understand that her device was too
complicated for her to effectively communicate, but he did not feel that it was his place to
challenge the school’s authority either. Mass media and popular culture became as a
pathway, albeit a limited one, for less privileged parents like he, Nelson, and Marisa to
discuss their children’s relationship to the iPad and Proloquo2Go without using
specialized terminology.

Conclusion
As with Daisy, whose remarks about Steve Jobs I discussed at the beginning of
this chapter, I had to reflect on the meanings that Karun associated with him, her sense of
the disability media world, and her social status. When Karun, Pargev, and their family
fled the war in Syria for the US, they stayed temporarily with relatives in Northern
California. “We decided, just we need to come back,” said Karun, “That’s the best place
to come.” Pargev and his younger brother immediately entered the well-regarded local

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public school district, and it was there that a teacher told Karun about Proloquo2Go on
the iPad. “She said, ‘80 percent of my children are using it and tremendous language
came out.’ I couldn’t believe,” Karun remarked. What I personally found even more
unbelievable though was that, of all the places to find refuge in the US, Karun and her
family somehow landed in Cupertino, CA—home of Apple’s corporate headquarters and
a school district replete with the latest Apple technology. When I remarked to Karun
about this incredible luck, she shared a story further illustrating her feelings of personal
connection to the company:
We were walking on Sunday morning with my cousin. She said, “Do you want
me to show you Steve Jobs’ house?” I said, “Yes, I want to see that.” We took
pictures, in front of the house. You know that his mom was Armenian?
46

Thousands of miles from home, Karun found herself linked into a diasporic community
of Armenians, of which she considered Steve Jobs to be a member. On the one hand,
even in his death, Jobs remains larger than life and a metonym for all things Apple, Inc.
Yet on the other, Karun developed an intimate and localized understanding of the media
celebrity. Karun’s conception of the disability media world is tied to her transnational
consumption practices. Her appropriation of the figure of Steve Jobs was linked to
opportunities for rebuilding her family’s life in the U.S., as well as maintenance of
cultural pride after, as Christian Armenians, Karun and her family were persecuted by
militants and forced to flee the country.
While Karun can locate a part of herself in Jobs’ story though, her lived
experiences and the experiences of other less privileged parents receive little attention in

46
Paul Jobs and Clara Jobs (née Hagopian), an Armenian-American woman (Issacson, 2011), adopted
Steve Jobs at birth.

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the popular press. These media discourses overwhelmingly feature more privileged
families, who have greater money, time, stability, and resources. This can potentially
mislead less privileged parents who might not have the education and critical media
literacy levels to judge the realism of these constructed narratives. In addition, media
representations of AAC users generally lack diversity by any measure—including race,
ethnicity, gender, sexuality, and class. Seeing as popular culture is an important way for
parents from less privileged positions to gain access to information about AAC users and
navigate professionalized spaces, there needs to be a broader range of popular figures for
them to draw upon.
Online spaces geared towards the parents of youth with disabilities may not meet
the needs of those who are marginalized due to their class, cultural, or linguistic
backgrounds. Write Blackburn and Read (2005, p. 514), “Information therefore also
needs to be available in printed and other forms to ensure that carers who cannot or do
not wish to use the Internet are not excluded.” Seeing as all of the parents that I spoke
with had some form of internet access, the issue at hand is more than technical in nature.
Claiming knowledge and authority about one’s child, their disability, and their
technology use requires a degree of social and cultural capital.
The gendered nature of disability media worlds is also important to note
considering interactions between class and gender. Less privileged mothers without a
college degree might benefit more from hands-on workshops in which they can take
physical notes than independently learning about technology from online resources.
When engagement with networked media worlds become part of the model of ideal

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maternal involvement, a conception largely shaped by privileged groups, upper and
middle class mothers are advantaged in wielding fluency of this social language.
My fieldwork also suggests the need for non-commercial device-based online
groups for parents of all level of technical expertise. Such groups could support parents
whose children might all be using the same type of assistive technology but are dispersed
geographically and/or have different diagnoses, and are also not censored (or perceived to
be censored) by corporate interests. Anne spoke of how she didn’t know any other
parents whose children were using Proloquo2Go, as her son (who was not Deaf) had been
placed in a classroom of mainly Deaf children due to his early use of ASL. Seeing as I
had been interviewing lots of other parents whose children were using the same
technology as her child, I assured her that there were people nearby with this experience,
but I wondered how they would ever connect with one another.
In sum, there were clear class distinctions between parents in their participation in
the world of disability media. Seeing as most research on the media practices of parents
of youth with disabilities centers on white, upper middle class parents (e.g. Morris, 2014;
Ammari, Morris, & Schoenebeck, 2014; Ammari & Schoenebeck, 2015), discrepancies
in how central the internet figures into parents’ information seeking suggests an
exception fallacy when only studying those who self-select into such mediated spaces.
Peter’s comment that “You’ve gotta be plugged in” works two ways: “You’ve gotta be
plugged in” to gain access to online information that might help one’s child, and “you’ve
gotta be plugged in” to be located by researchers looking for parents primarily through
blogs, listservs, emails, social media, and social networking sites.

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CHAPTER SEVEN
CONCLUSION
I don’t know what Rachel [the speech-language therapist] thinks about, or the creators of
Proloquo think about, but there should be some kind of study, to go into the kids’ homes
and see how they are using it. Probably they already did it, but I don’t know if they did it
with other kids, because there are kids that are different. Those who need that program—
every kid is different.
—David, father of Beatriz (italics added for emphasis)

I’d be interested to see your research after. I would think that the families you talk to,
what we’re seeing is pretty much the same. It’s just different experiences, but we have
the same thinking about how we want our kid to be. […] You probably have a deadline,
but even after you’ve finished, you’ll probably have a part two, because there’s a lot.
—Daisy, mother of Thomas (italics added for emphasis)

Over the course of my observations and interviews, a number of parents with whom I
spoke, such as David and Daisy, asked me questions about what I was finding out along
the way. This metadiscourse about my research was itself revealing. David had a vague
sense that his daughter had not been accounted for in professional evaluations of how
children use the iPad and Proloquo2Go for augmentative and alternative communication
(AAC). Daisy hypothesized that, on a basic level, most parents were like her and most
child users of the iPad and Proloquo2Go were like her son. Both made generalizations

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(either about “every kid” or “families” overall) but the word “different” reappears in
David’s quote while Daisy repeatedly mentions things being the “same.”
On the surface, David and Daisy do not seem so dissimilar. Their lives converge
as Latino/a parents of non-speaking children with developmental disabilities in the Los
Angeles area. Beatriz and Thomas were both, as Raul’s mom, Nina, put it, “born at the
best time” to be able to take advantage of iPad as an AAC device at a young age. Each
was glad that their children had the opportunity to better communicate their thoughts and
feelings. But their lives also diverge in profound ways. David is a working-class
immigrant from Mexico and Daisy is an upper-middle class professional. Their remarks
about my research illustrate the tensions that I described in Chapter 1 between
understanding parents of youth with disabilities as being in “in a class by themselves”
(Landsman, 2000, p. 184) and as differing in terms of social class.
Through this dissertation, I have shown that these distinctions are not an either/or
proposition. At the conclusion here, I provide an overview of the ways in which more
and less privileged families of youth with communication disabilities both are and are not
alike, and summarize the contribution that this dissertation makes to understandings of
capital and structural inequality by way of intersectional analysis. I emphasize the
importance of examining overlapping systems of oppression that privilege certain parents
of youth with disabilities over others. I then take a step back and examine moments in
which more privileged parents themselves brought intersectionality into the forefront of
our conversation. Lastly, I propose practical applications for how this research can be
taken up by the policy, education, and technology sectors, and suggest areas for ongoing

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inquiry by researchers of children, families, and new media.

Similarities, Differences, and Intersectionality
In terms of similarities across more and less privileged families, I illustrated in
Chapter 2 how the case which covers the iPad—an aspect of the technology that might
otherwise be considered trivial—becomes an important point of how parents saw their
child, their child’s device, and the social structures in which their child’s technological
practices were embedded. Chapter 3 focuses on the majority of families in the study who
wound with more than one iPad in their home, a phenomenon that occurred across
income levels. Chapter 4 shows how parents of youth with disabilities can feel as though
their child is discounted by society, but that their child’s use of media and technology can
provide a new pathway for reclaiming dignity and recognition of their abilities. In
Chapter 5, I discuss how parents had a more nuanced understanding of their child’s voice
than dominant discourse surrounding voice and AAC suggests. And in Chapter 6, I
reveal how all parents participate in disability media worlds in some manner. Across
social class, parents found opportunities for social and emotional support from online
communities, valued the stories of real non-speaking children that they discovered
through mainstream and user-generated media, and also felt that the most famous AAC
users in mass media were not necessarily the most appropriate role models for their child.
There were however also significant differences among parents in terms of how
they related to the institutions that directly and indirectly influenced the media and
communication technologies that their children used at home and school. In Chapter 2, I
detailed how less privileged parents had little choice but to be tied to the whims of school

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districts, who seemed to care more about protecting the technology than serving their
child. Chapter 3 reveals the ways in which schools and therapy providers embed middle
class values into the language they use to talk about the iPad, and that this inherently
benefits more privileged children and parents. In Chapter 4, I show the limits of popular
culture and new media as a way for working-class non-speaking children to seek alternate
modes of expression in relation to the other ways in which more powerful entities
undercut their competencies. Chapter 5 brings to light the ways in which AAC systems
are gendered and raced through sociotechnical practices. And I show in Chapter 6 how
presumptions of uniform access to information and proficiency in technology among
families can marginalize less privileged parents.
One way to understanding these varied experiences among families is through
Bourdieu’s (1984, 1986) conceptions of capital, subsequently developed among
researchers interested in U.S. parental participation in children’s schooling (Lamont &
Lareau, 1988; Lareau, 2000, 2003), special education (Ong-Dean, 2009; Trainor, 2010),
technological practices (Kvasny, 2006; Sterne, 2003a), and home media use (Seiter,
2008). iPads—used for fun, communication, education, and entertainment—enter into
systems that reproduce social inequality and reward parents who can most effectively
mobilize economic, social, and particularly cultural capital in its embodied, objectified,
and institutionalized forms. The privileges that upper and middle-class children in
mainstream education gain by being on the right side of the “home technology divide”
(Seiter, 2008) extends to upper and middle-class youth with disabilities and the resources
they have at home to support their use of assistive technologies as well.

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Beyond a single population, a single piece of hardware, and a single piece of
software, this dissertation has also highlighted the importance of examining intersecting
differences in how contemporary parents make sense of technological and cultural shifts
in family media use relative to overlapping systems of privilege. Intersectionality, as a
concept, emerged in the late 1980s and early 1990s as a way to problematize academic
work in law that focused either on race or gender in isolation (Crenshaw, 1998, 1991).
While a sweeping discussion of the benefits and drawbacks to intersectional analyses
(McCall, 2005; Nash, 2008; Olesen, 2011) and its grounding in work by feminists of
color (Collins, 1998) is beyond the scope at present, it is important to acknowledge
intersectionality’s far reaching applications to the dialectical study of intergroup and
intragroup relations (Crenshaw, 1991). Collins (2008) emphasizes the importance of
dynamic centering and relational thinking, whereby two or more systems of power are
analyzed for mutual constituency.
In this dissertation, I have focused more squarely on distinctions of disability and
class, while also attending to how individual identities and institutional factors interact
with gender, race, ethnicity, immigration status, and linguistic background. I have
forefronted the simultaneity of these identities as well as their fluidity. Each chapter has
taken an intersectional approach to understanding how parents incorporate media and
technology into their lives at home and as part of household activities beyond those walls.
I have linked otherwise largely abstract notions of privilege with specific passages
throughout the dissertation, revealing particular kinds of indignities and controls imposed
on working-class parents of youth with disabilities by interconnected bureaucratic
systems.

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Recognizing Privilege
I would be mischaracterizing more privileged parents to say that they were
completely unaware of their own advantages. In fact, there were moments in my research
in which these parents made an explicit point of recognizing the material and symbolic
resources that they had at their disposal, especially compared to less privileged parents of
non-speaking youth. For example, towards the very end of my interview with Luke’s
parents, Rob and Debra, they asked me how I had arrived at my research topic. I
mentioned that while I had difficulty pinpointing one specific reason, the fact that my
sisters and I have all ended up working professionally in the disability and technology
space suggested some common motivations among us. I mentioned how, due to this
shared language, I was able to help my sister write her application to graduate school for
communication disorders and sciences, an essay that focused on how the ability to
communicate was inherently a social justice issue.
“That’s surprising that someone would characterize it as a ‘social justice issue,’”
replied Rob, to which I responded, “Hmm?” I sensed that I had transgressed some sort of
definitional boundary. “It’s just the term ‘social justice,’ is a kind of dramatic term. It
conjures up images of people being held down,” explained Rob. He associated the term
with stigma and oppression, as well as with minoritized ethnic groups:
You can argue being an autistic in a Spanish community or something is a social
justice issue. I can get that. They routinely get screwed on services. But I don’t
think Luke is getting gypped on services relative to his speech issue because he
doesn’t speak.

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Rob rebuffed the suggestion that his own son was “being held down” by society in any
manner. In his view, Luke’s status as a white, upper-middle class boy largely shielded
him from discrimination due to his disability. Rob emphasized that his son was very
different from autistic youth in “a Spanish community” (a phrase which I suspect Rob
also associated with economic disparity) because Luke was not for lack of access to
social services. To Rob, the iPad with Proloquo2Go was not “alleviating an injustice”
but “broadening the options, giving him a better shot at [communication], which is great.
One of my hot buttons I guess!” he said with a nervous laugh.
Another upper-middle class white father, Peter, also discussed how he was in a
very different position than low-income Latino parents of disabled youth. Peter, Alice,
and their son Danny live in Ventura County, at the southern end of California’s
agriculture-rich Central Coast. California is by far the state with the largest number of
migrant farm workers, and Ventura one of the top counties in which these individuals live
and work (Holmes, 2013). Peter had been complaining about his difficulty in accessing
pricey proprietary written materials produced by AAC app companies when he took a
moment to reflect on his relative privilege:
In Danny’s classroom, probably half the parents in there are professionals on one
level or another, and the other half work in fields. No offense against the field
workers, but they don’t have the education or even just the English to digest this
but they’ve got the same kid I’ve got. Why are they not able to get a version of
this for free that helps them? Just because they don’t speak English doesn’t mean
they don’t love their kid. They want the best for their kid, too.

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For Peter to use these documents (with their specialized technical language) to best
support Danny in using the iPad as an AAC device not only required significant
economic capital, but also cultural capital. While “they’ve got the same kid I’ve got,”
according to Peter, education and language sets the classroom parents apart from one
another.
Parents like Rob and Peter in no way speak for less privileged families of non-
speaking youth in absentia, but they do highlight the complex ways in which access to
communication technologies both is and is not “a social justice issue” for families who
are “partially privileged” (Nash, 2008, p. 10). More privileged parents of non-speaking
youth can at times have more in common with similarly class-privileged parents than
with less privileged parents of non-speaking youth, and vice versa.
Coming to such a definition of AAC use as a “social justice issue” depends on a
complex mix of temporal, historical, and political factors, as well as subjective
interpretation (Hulko, 2009). For example, the class status of Karun and her husband
significantly shifted upon their move from Syria to the U.S., shaping the social,
economic, and cultural resources available to them to best support their autistic son
Pargev and his use of media and technology for play, learning, and communication (see
Chapter 1). Oppression and privilege are not simply additive or cumulative, but rather
must be read in relation to a set of shifting, contextual variables and multiple identities.

The Limits of DIY Parenting
Stephanie’s dad, Nelson, spoke proudly of how his wife, Marisa, had “been very
persistent and very adventurous as to, ‘I’m just going to do this on my own. I’m going to

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go to the library, get books, and find resources, and do whatever it takes to help our
daughter.’” But whereas the notion of a DIY or “do-it-yourself” ethos of American
individualism evokes a sense of agency, when phrased as “do whatever it takes” and “do
this on my own,” this independence reflects abandonment due to neoliberal logics of care
and a limited range of resources available to less privileged parents. More privileged
parents of youth with disabilities that seem to engage in DIY parenting receive invisible
support from multiple sources; for example, through the diffusion of information through
extensive and reliable social networks. At a unique time in U.S. history in which parents
on the whole are increasingly isolated from community support, the best thing we can do
for them is to find alternative ways to “do-it-together.”
None of this is to say that more privileged parents of youth with disabilities
should refrain from drawing on their resources to free up opportunities for less privileged
parents. Notes Ong-Dean (2009, p. 161), “Even when they are most narrowly focused on
the well-being of their own families, privileged parents are, after all, trying to help not
themselves, but their children, and they are dealing with laws and institutional practices
that limit what can be done.” In turn though, policymakers, professionals, and
technologists must provide services and build tools in a more egalitarian and culturally
sensitive way.
One approach is for insurance and local school district assistive technology
policies to better reflect the new landscape of AAC devices. The total lack of third-party
insurance coverage for tablet-based devices inherently privileges upper-income parents
who can afford to pay out-of-pocket for them. With respect to services that support
parents’ understandings of the iPad as an AAC device, clinicians, therapists, and teachers

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need to be more reflexive regarding their own class biases in how they approach the iPad
and children’s use of it. It is impossible to separate professional beliefs about the
“proper” use of an iPad as an assistive technology from personal beliefs about the
“proper” role of media and technology in children’s lives overall. Upper and middle-
class practitioners who cannot see the viewpoints of less privileged families risk further
isolating them. I want to caution though against solely blaming individual
schoolteachers, therapists, or administrators either, for they are making do with high-
stakes demands on their own time and significant budgetary constraints.
These class biases exist at the institutional level, where there is much presumed
about how parents seek information regarding how best to support their child’s
technology use. While high-earning parents with a college degree may welcome online
tutorials as a way to supplement their own technology training, this assumption isolates
many caring parents for whom “just going to a website” is a challenge. It is not that these
parents do not care—but parents, as learners too, also bring their own educational
experiences to the table. New approaches to parent technology training might take a cue
from disability studies and the Universal Design for Learning movement (Rose & Meyer,
2002; Rose, Meyer, & Hitchcock, 2005). This includes presenting parents with
information and content about the iPad and Proloquo2Go in a variety of modalities and
using different techniques to stimulate parents’ interest and motivation for learning how
best to use media and technology with their child.
Engineers and systems designers also have a role to play. There is significant
room for improvement in how race, culture, and gender are designed into synthetic
speech systems. Besides our words, our voices say so much about us. Non-white voices

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and female voices though are largely silenced through synthetic speech. There also needs
to be more spaces for parents of AAC users to gather online beyond support groups based
on geographic location or specific disability. While the majority of parents who
participated in the study had children on the autism spectrum, it is important not to lose
sight of the fact that children may be unable to or have significant difficulty speaking due
to other developmental disabilities and rare disorders. When the iPad and AAC become
synonymous in the press with autism, as is currently the case (Haller et al., in press), the
specific needs of non-speaking children with other disabilities risk being overlooked.

Future Research
Cultural focus on “fixing” children with disabilities has obscured our ability to see
the ways in which the sociotechnical systems in which they are embedded need extensive
repair work. I will, as Daisy noted at the beginning of this chapter, “probably have a part
two” of the research presented in this dissertation, if not more. At present, the volume of
intersectional research on family media use is slim, with some exemplary exceptions
(Clark, 2013; Katz, 2014; Yardi & Bruckman, 2012). A broader paradigm shift towards
intersectionality is needed to account for youth with disabilities in children and media
research (Alper, Katz, & Clark, under review). Feminist disability theorist Alison Kafer
(2013, pp. 32-33) writes of the figure of the child in U.S. politics that “the always already
white Child is also always already healthy and nondisabled; disabled children are not part
of this privileged imaginary except as the abject other.” The media-using Child is not
only assumed white as default, but also able-bodied, thereby othering youth with
disabilities from normative constructions of childhood. This exclusion ultimately

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obscures the multifaceted nature of disabled children’s media use, and how disability and
specific disabilities intersect with race, class, ethnicity, nationality, language, and gender.
While this dissertation focused primarily on the use of the iPad among non-
speaking youth with developmental disabilities, more research is also needed into how
youth with various disabilities and their family members incorporate all sorts of media
and technology into their lives (Alper, 2014). In particular, autistic youth are often
characterized as being naturally “tech-savvy.” As with the “digital natives” fallacy, this
misperception can mask complex intersections with class and gender, as well as
individual variations in children’s preferences. For example, said Thomas’s mom, Daisy,
My son never really touches the computer. Thomas is not one of those. He’s not
into the PS2. I bought them, but [laughs] I’m the one that ends up playing with it.
He’s not into any gadgets. He’s not a “techy” person. Some kids you give them
any game on the computer—he’s not like that.
While there has been some survey research on autistic children’s media and technology
use (Shane & Albert, 2008), 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.
The deployment of the iPad as an assistive device for non-speaking children is
shaped by the interconnected sociocultural, political, and economic systems within which
families of children with disabilities in the U.S. have been entwined historically. Those
living with disability are sometimes included and at other times excluded from the
generalizations that communication scholars make about the place of new media
technologies in the home and in everyday life. Augmentative and alternative

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communication devices serve specific purposes, but just like other mobile
communication technologies, they are shaped through social practices and have broader
societal consequences. As such, it is crucial that we avoid using technological and social
determinism to explain their use and adoption. Ultimately, not only can communication
research serve the interests and rights of disabled individuals, but disability and the
stories of non-speaking individuals can in turn improve communication theory, research,
and society writ large. They have a lot to say if the rest of us can figure out how to listen.

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CHAPTER EIGHT
EPILOGUE
“iPad is disabled”
There was one unresolved incident during my fieldwork that has lingered with
me. On the day of my second interview with Beatriz’s parents, her school-issued iPad
had come home newly passcode protected. This likely resulted from some kind of
software update over the school network or change in device settings, but could not be
verified. There had been no message sent home from the school that this change would
be made. The passcode had not been shared either with Beatriz or her parents. Said her
father, David, “She never had a password on that iPad. They put it there yesterday, and
today again. So I cannot see.” Beatriz, standing next to David as he and I sat facing each
other on the sofa, took the iPad from David’s hands and pressed a combination of
numbers on the lock screen. The system interpreted these interactions as too many
purposeful but unsuccessful attempts to enter the passcode, and without warning, locked
Beatriz out of the iPad for an hour. I took a photo of the iPad screen with my iPhone (see
Figure 8.1, with my reflection in the iPad’s screen). At the time, it read, “iPad is
disabled. try again in 54 minutes.”

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Figure 8.1. Beatriz’ “disabled” iPad

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Ironically, not only was the mobile communication device “disabled” in this
situation (presumably by Beatriz’ own attempts at unlocking it), but the district also
disabled Beatriz in her use of the iPad to communicate at home. This sudden change in
access was likely in violation of Beatriz’ IEP, but David was hesitant to challenge the
school’s authority. Said David (in an earlier interview), “I’m always afraid that if we go
against the school district, they may take measures against her, like disliking her.”
Beatriz was free to transport the mobile device back and forth between home and school,
but both the device and her communicative agency were immobilized by the school’s
device settings and technology management infrastructure once she walked through the
doors of her home.

Networked Im/mobility
Reflecting back on Beatriz’s story and looking ahead to the growing field of
research on disability and mobile communication (Mills, 2009, Goggin & Newell, 2006),
I propose the term “networked im/mobility”
47
as a way to frame how tools like Beatriz’
“disabled” iPad enable both mobility and immobility. Along the way, both humans and
machines made decisions that rendered Beatriz’ iPad simultaneously, and irreconcilably,
mobile and immobile. Thus I define networked im/mobility as the negotiation of micro
and macro forms of mobility and immobility in public, private, and hybrid spaces through
the use of information, media, and communication technologies.
Historically, communication technologies have been popularly imagined as tools
that allow individuals with physical, motor, sensory, and cognitive disabilities to

47
The slash in “im/mobility” reflects the fluidity between immobility and mobility. The term may also be
reworked as networked immobility and networked immobilities.

213
transcend distance, marginalization, and isolation (Kirkpatrick, 2012; Goggin & Newell,
2003). Paradoxically, those same technologies are born from and enter into systems that
are discriminatory towards people with disabilities and other historically marginalized
groups. While mobile devices offer communicative and expressive potential for those of
all abilities, the systems within which individuals with disabilities are embedded (e.g.
medical, education, and media systems) impact the extent to which they benefit from
mass-produced technologies. Immobility, along with mobility, is a central force within
our unevenly networked society.
Networked mobility, as a concept, suggests a sense of simultaneous presence and
absence in space (both here and there) and in time (both now and later) through wireless
personal communication technology practices. Mizuko Ito (2005, p. 15) perhaps
encapsulates networked mobility best, writing, “This is a view of the mobile universe that
sees remote and networked relations as a pervasive and persistent fixture of everyday life,
rather than something that is specifically invoked through intentional acts, like making a
phone call or powering up a networked PC.” Alternatively, networked im/mobility
involves an expectation of interruption; for example, when a school aid forgets to place a
mobile communication device in a child’s backpack to be sent home (as happened during
my first visit to Beatriz’ house).
Mobile and immobile do not have a single static meaning with respect to
communication technologies; they shift in relation to different contexts, norms, and
perhaps most importantly, to one another (Bell, 2005). In the pre-internet era, for
example, sending a postcard to loved ones at home through the postal service was
“dialectically, about being mobile and yet immobile, moving over there whilst thinking

214
about here” (Hjorth, 2005b, n.p.). According to David Morley (2003, p. 443), we need to
better account for “how ‘mobile’ traditions incorporate new technologies as they
develop.” This includes mobile devices that came before the mobile phone (e.g.
transistor radios and portable TVs) and after (e.g. tablet computers and wearable fitness
monitors). Correspondingly, we also need a conception of how immobile traditions shift
as well.
The implications of different types of mobility have not been fully explored in
communication studies (Ishii, 2006). Kakihara and Sørensen (2001, 2002) identified
three different types of mobility in relation to ICTs: spatial, temporal, and contextual.
Spatial mobility is the degree of physical travel, while temporal mobility is the pace of
that travel. Besides this “where” and “when” component, contextual mobility is the
flexibility of patterns of situated interaction between people and social contexts through
ICTs. Mobility and networked mobility have primarily been discussed as spatial and
temporal (Wilken, 2005; Brewer & Dourish, 2008), and less so as socially contextual.
While some associate networked mobility with greater independence from place and
greater dependence on people (Wellman, 2001), place itself is being redefined in and
through mobility (Wilken, 2005).
Networked im/mobility reconfigures this existing focus on the social and cultural
aspects of mobility and immobility. Drawing on literature from media and
communication studies, mobilities studies, and critical disability studies, I discuss below
how the concept does so in three ways: first, by expanding the material focus to mobile
devices beyond the phone; second, by conceiving of mobility and immobility as more
than just spatial, temporal, and contextual, but also in terms of bodily, economic, and

215
social im/mobility; and lastly, by considering users beyond those of able mind and body,
like Beatriz, who in some respects have non-normative relationships to mobility,
immobility, and mobile communication technologies.

Immobile Privatization and Socialization
With the phrase “mobile privatization,” Raymond Williams (1974) referred to a
1950s trend among the suburban middle class to travel the world by means of broadcast
television while simultaneously becoming closed off from the world in the private family
home. Lynn Spigel (2001) argues that a shift occurred in the 1960s and 1970s in which
home became something that middle class could take with them while traveling, and that
mobile media (e.g. portable TV sets and later, cell phones) enabled this transportability.
Feminist media scholar Michelle Rodino-Colocino (2012) points out that the ICT
users that Williams and Spigel imagine in their respective conceptualizations move
seamlessly due to their economic mobility. This does not reflect those whose mobility
and immobility is persistently impacted by factors such as high unemployment rates and
cuts in social welfare. In a study of a failed community wi-fi project targeting low-
income single mothers, Rodino-Colocino contends that extending wireless networks to
these homes enforced “immobile privatization” when matched with a lack of subsidized
child care and affordable health insurance. Individuals’ mobilities and immobilities
around and through communication technologies are shaped by broader policies.
The mobility of mobile phones is highly unstable. The disabling of Beatriz’ iPad
was accidental, though not entirely surprising. A feminist take on mobile media and
public/private life highlights “oscillation between forms of mobilism and immobility”

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(Hjorth, 2010, p. 187), sometimes phrased as “immobile mobility” (Wallis, 2013) and
“mobile immobilities” (Hjorth and Lim, 2012, p. 479). For example, Gonzales (2014)
found that low-income individuals with no-contract cell phone plans often struggle with
the constant upkeep of broken, disconnected, and temporarily connected cell phones.
Mobile communication technologies are not “always-on/always-on-you” (Turkle, 2008b);
for some people more than others, they are frequently-off/frequently-off-you.
For others, immobility is a luxury and a choice. Some purposely turn off their
phones, leave them at home, choose various forms of non-use (Wyatt, Thomas, &
Terranova, 2002), or perform an act of “media refusal” (Portwood-Stacer, 2013). In his
research on mobile phone practices among youth in Seoul, South Korea, Yoon (2003)
found that young people and their parents would adopt certain “immobiling” strategies to
manage their relationships with one another and with other social groups in certain social
contexts. This included students enforcing norms limiting talking on the mobile phone
during class, and parents making children disconnect their phones while studying.
As another counter to Williams’ notion of mobile privatization, Bakardjieva
(2003, p. 291) offers “immobile socialization” to describe how individuals experiencing
physical isolation (e.g. retirees, individuals with disabilities) maintain social connections
and invent new forms of social organization through online spaces. At the time of
Bakardjieva’s writing though, personal internet connections were mainly tethered to
one’s home and there was little market penetration of personal mobile communication
technologies with wireless internet connections. The benefits or drawbacks to
immobiling practices with mobile communication technologies can only be understood
within the context of immobilizing policies.

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Mobilities and (Im)mobilities
Media studies and communication studies are not the only fields of research
concerned with issues of mobility, immobility, and networked technologies. In the social
sciences, “mobilities” is an interdisciplinary paradigm for exploring the large and small-
scale movement of people, objects, capital, information, and ideas (Sheller & Urry,
2006). Scholars such as Kaufmann (2002) contend that studies of local and global
mobility must also account for immobilities and motility (or the potential for mobility).
Underpinning this focus on immobilities is the idea that not everything in the world is
mobile and that mobility and immobility are symbiotic, or what Urry (2003) refers to as
the “mobility/moorings dialectic.” To use an example of vehicular transportation,
subway cars must return daily to rail yards in order to keep moving.
Immobility has also been a focus more broadly in sociological theory. Besides
material things, the mobility/moorings dialectic applies to social processes such as
discrimination, which is always evolving yet appears nearly impossible to dismantle by
virtue of how deeply it is embedded in society. Of mobility, writes geographer Doreen
Massey, “some are more in charge of it than others; some initiate flows and movement;
some are more on the receiving end of it than others; some are effectively imprisoned by
it” (Massey, 1993, p.61, qtd. in Adey, 2006, p. 83). In response to theories of
globalization emphasizing the porous and the borderless, Turner (2007) argues for a
“sociology of immobility” to uncover that which is gated, secured, and regulated for
political purposes in modern society. A weakness of the mobilities paradigm though is
that it seemingly covers everything and nothing. Broad in scope, it provides little

218
explanatory power over how or why certain mobilities and immobilities impact
individuals, groups, or institutions, and the implications for everyday life.

Disability and Immobility
With a shared emphasis on interdependent systems of mobility and immobility,
there is a natural though underexplored theoretical intersection between mobilities studies
and disabilities studies (Pyer & Tucker, in press). For example, parents of young adults
with cognitive disabilities report that unexpected situations (e.g. missing a bus) can lead
to their children getting “stuck”; after backup plans are exhausted, parents value that a
mobile phone aids their child in getting “un-stuck” (Dawe, 2006). In a study of
transportation, Adey (2006, p. 90) calls for a more fluid notion of immobility,
emphasizing a “relational politics of (im)mobilities that takes into account not only the
differences between movement, but their contingent relatedness.”
Adey uses the terms “relational” and “political” (to describe the nature of
mobility), as does Kafer (2013) in her relational/political model of disability. Adey’s
postmodern grammatical choice in writing “(im)mobilities” also mirrors how some
critical disability scholars conceive of “dis/abilities.” The slash between “dis” and
“abilities” symbolizes the permeable and co-constitutive relationships between disability
and ability (Linton, 1998; Goodley, 2014): that assumptions about one shapes popular
conceptions of the other; that all individuals have some combination of abilities and
disabilities; that not all disabilities or abilities are permanent; and that what might be a
disability in one context can be an ability in another context and vice versa.

219
Claiming a natural relationship between im/mobilities and dis/abilities is not
unproblematic though. For example, much work in mobilities studies emphasizes the
corporal without unpacking normative assumptions about how bodies move through
space and time (e.g. Gogia, 2006). Not all individuals who identify as disabled claim this
linguistic deconstruction either. For instance, writes blogger Sharon Wachsler (2012,
para. 37), “The parenthetical ‘(dis)’ seems to suggest that those of us with disabilities are
also partly ‘abled’ (i.e., nondisabled). And there is no part of me that is nondisabled
because it is a part of my identity and life experience.” Networked im/mobility opens up
new possibilities in bridging media studies, mobilities studies, and critical disability
studies; however, the language used within these various fields is not necessarily
interchangeable.

Conclusion
The clock on Beatriz’ iPad screen continued to countdown as I left her home that
day. She could conceivably “try again” after an hour had expired, but what would have
been the point? The iPad would not be re-enabled until Beatriz brought it into the school
the next day, the mooring for her mobile device. Moving forward, supporting youth and
adults with disabilities requires us to trace the role of networked im/mobility in how
disability and other dimensions of difference are experienced in the digital age. What
does networked im/mobility mean for different populations, particularly those who live
with varying degrees of social, economic, and/or bodily immobility? How do social and
cultural factors shape how individuals understand and articulate their own networked
im/mobility? We need to understand the extent to which access to economic, social, and

220
cultural resources, as well as broader institutions, infrastructures and policies shape their
lived experiences of immobility and mobility through their everyday use of mobile
communication technologies.

221
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APPENDIX A: METHODS
This appendix details my methodology in undertaking qualitative research with parents of
youth with complex communication impairments. I discuss how I determined the criteria
for participation, recruitment challenges, the design of the study, my mode of analysis,
and research project limitations.

Participants
Table A.1 provides descriptive data for child and parent participants. There were
three criteria for parental participation in the study. First, parents had to have at least one
child with the following characteristics: a) the child is between ages 3-13 at the start of
research, b) embodied oral speech is not the child’s primary mode of communication, c)
the child uses the iPad and Proloquo2Go as an augmentative and alternative
communication (AAC) system, and d) the cause of the child’s communicative
impairment is a developmental disability. These disabilities included autism, cerebral
palsy, and rare genetic and chromosomal disorders. Note that throughout this
dissertation, I have removed any specific mention of said rare disorders in order to
protect participants’ anonymity. No medical files or school records were consulted
during research and parents provided the language used to describe their child’s
disability. Table A.2 presents the demographics of child participants. Second, at least
one parent spoke and understood English at a sufficient level as to not need an interpreter.
Third, parents had to live in Los Angeles County, Ventura County, or Orange County,
California.

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Table A.1. Descriptive data of child and parent participants
Child N 20
Age (median) 8
Male 16
Female 4
Disability
Autism 15*
Cerebral palsy 3
Rare genetic or chromosomal disorder 3*
Race
White 11
Non-White 9
Latino 3
Mixed race 3
Asian 2
Black or African-American 1
Household income
a

≥ $100,000 8
$99,999 - $50,000 2
$49,999 - $25,000 4
≤ $25,000 1
Language other than English used at home
b

No 10
Yes 7**
Parent marital status
Married 18
Single 2
Father education
c

College or advanced degree 11
Some college, high school, or less 5
Mother education
c

College or advanced degree 11
Some college, high school, or less 5

*One child was both autistic and had a rare disorder.
** These languages included Spanish, Armenian, and American Sign Language.
a
Five families did not disclose household income.
b
Three families did not disclose linguistic background.
c
Four families did not disclose either father’s or mother’s education level.

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Table A.2. Demographics of child participants (order by date of first parental encounter)
Name Age* Gender Race/Ethnicity Disability More/Less
Privileged
Paul Michael 8 M White/Armenian Autism Less
Beatriz 10 F Hispanic, Spanish,
or Latino/Mexican,
Mexican-American,
or Chicano
Cerebral palsy, epilepsy Less
Nash 3 M White Cerebral palsy More
James 8 M Asian/Korean Autism Less
Madeline 9 F Asian/Filipino Autism Less
Thomas 11 M Mixed race (Asian;
White)/Filipino
Autism, intellectual
disability
More
Stephanie 10 F Hispanic, Spanish,
or Latino/Mexican,
Mexican-American,
or Chicano
Autism Less
Pargev 13 M White/Armenian Autism Less
Raul 5 M Hispanic, Spanish,
or Latino/Cuban;
Mexican, Mexican-
American, or
Chicano
Autism More
Talen 6 M Mixed race (Black
or African-
American; Hispanic,
Spanish, or Latino;
White)/Puerto Rican
Autism Less
Luke 13 M White Autism More
Danny 6 M White Autism, epilepsy More
Isaac 8 M White Autism More
Kevin 13 M Mixed race (Asian;
White)/Japanese
Autism Less
Eric 6 M White Rare chromosomal
disorder
More
Chike 7 M Black or African-
American/Kenyan
Autism More
Cory 4 M White Rare genetic disorder More
Sam 8 M White Autism, intellectual
disability, genetic
disorder
More
River 7 M White Cerebral palsy Less
Moira 10 F White Autism Less

*Child’s age at the beginning of research.

257
While 3- to 13-years-old might be a rather large age range for traditional studies
of children and media, there were a couple of reasons why I bounded the study in this
manner. First, chronological age is an arbitrary marker when one considers that the
developmental age of this group of children tends to be much younger in certain domains
(e.g. physically, cognitively). For example, while Elmo tends to be beloved by
preschoolers, he was one of the favorite media characters of Danny (who is 13-years-old
and autistic). At the other end of the age range, Nash (who is 3-years-old and has
cerebral palsy) was a big fan of Miles Davis and other jazz musicians, due in large part to
the influence of his artist parents. “Age appropriate” media is not necessarily appropriate
for every child (Alper, 2014).
Second, the age range of 3- to 13-years-old was also based on the significance of
those ages within the U.S. Individuals with Disabilities Education Act (IDEA). Three
years old is the age at which children in the U.S. qualify under the IDEA for an
Individualized Education Program (IEP). The IEP is a customized plan that focuses on
the educational needs of children in public school special education. Prior to age 3,
children qualify for an IFSP, or Individualized Family Service Plan, which focuses on the
services that a family needs to support child development. At age 14, the IDEA requires
that the IEP include a statement regarding the student’s transition into the post-school
world.
The specification that all parents have a child who uses the iPad and Proloquo2Go
as a communication system evolved out of the early stages of this research project. In the
initial phase (September-December 2012), I observed children using a range of different
dedicated and non-dedicated high-tech AAC devices. Starting in January 2013, I chose

258
to limit my observations to parents of children using an iPad equipped with Proloquo2Go.
This was largely due to increasingly frequent opportunities to observe children using that
particular AAC system. Danny’s dad, Peter, noted on this trend:
Proloquo has its dominance, A, because they were first, B, because it’s easy, C,
they’re a hundred dollars cheaper. When you’re on all the forums and the
websites and Facebook and everything, everybody says […] Proloquo has become
shorthand for an AAC app on an iPad. […] Proloquo is ubiquitous.
It seemed that focusing on the Proloquo2Go app (and not other AAC apps) would allow
me a larger participant pool. As I met different speech-language pathologists at various
disability and assistive technology events and conferences and told them about my
research, many had strong feelings about Proloquo2Go, both positive and negative. I
explained to them that my interest was not in measuring Proloquo2Go’s effectiveness as
a speech aid from a clinical standpoint, but in theorizing its role in family life from a
sociological perspective.

Recruitment
Parent participants for the study were recruited in two main ways. First, some
parents were identified through the Rossmore Regional Center (a pseudonym), a
nonprofit private corporation in the State of California that operates under the
Department of Developmental Services. Rossmore works in partnership with the
Evergreen Assistive Technology Hub (a pseudonym), an organization that provides
assistive technology services to people with disabilities in Southern California. Prior
written permission was obtained through Rossmore for parents to be recruited. Potential

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Rossmore/Evergreen participants were approached with a recruitment document with
information about the study via an intermediary (their speech-language pathologist [SLP]
from Rossmore/Evergreen) in order to reduce pressure to participate. If the potential
participants agreed to take part in the study via phone or email exchange with their
Rossmore/Evergreen SLP, then the SLP notified me of upcoming iPad/Proloquo2Go
training appointments at the participant’s home. Eight families were recruited in this
manner.
In order to access a larger subject pool of parents, I attempted to use snowball
sampling, a recruitment method in which one participant suggests additional participants
through their social network. I found the method to be very difficult though to implement
for this study. Very few parents with whom I spoke knew of other parents whose
children were using Proloquo2Go on the iPad. Some did know of other parents (e.g.
those of their child’s classmates), but many felt as though they did not have a close
enough relationship to those other parents to pass along information about my study.
Ultimately, additional parent participants were located via referrals through
various gatekeepers, including local speech-language pathologists, educators, and
organizers of several non-profit groups and listservs in the Los Angeles area focused on
supporting families of children with disabilities. Twelve families were recruited through
this strategy. Attention throughout the study was paid to recruiting parents from a
diverse range of socioeconomic, racial, and ethnic backgrounds, using what Lindlof and
Taylor (2002) term “maximum variation sampling.”

260
None of the parents were economically compensated for their involvement in the
research, and a number of them mentioned other motivations for participating. For
example, when I told Vanessa that I was grateful for her time, she responded,
That’s one thing about being in the special needs community and population, is
that parents are always sharing. We’re always sharing with each other, like just
last night on Facebook. I belong to some autism groups on Facebook. A mom in
Kentucky reached out. She and I were messaging. It’s so cool!
Vanessa likened her participation in my research as another form of sharing with the
“special needs community and population.” In turn, she highlighted my responsibility to
give back to the community through my research.
One way in which I strived to do this was to share helpful technology tips that I
learned from other parents in interviews or from Rachel and Caren in home training
sessions. I passed along information regarding the brands of iPad cases that parents
mentioned liking; strategies for going out to the movies with multiple children including
one on the autism spectrum; how to integrate Prolqouo2Go with Dropbox as a way to
backup the software; and how to do Google searches for other relevant apps. There was a
need for this because comfort with technology was uneven among parents across social
class, and, as I mentioned earlier, because many of the parents I spoke with did not know
other parents of children who communicated using the iPad with Proloquo2Go. In these
small ways, I strived to redistribute among families the information to which I was
privileged to gain access.

261
Study Design
The study employed two different qualitative methods with parents: participant
observation and semi-structured depth interviews. Table A.3 details which families I
observed and/or interviewed. Fieldwork was conducted over 16 months, from October
2012 to April 2014. Prior to the first observation or the interview, parents received an
information sheet about the project and verbal consent was obtained. Parents consented
to their children being observed as well.

Table A.3. Parents and children observed and/or interviewed
Child Parent/s Observed/
Interviewed
Observation
and/or
Interview
Number of Home
Observations
Paul Michael Garine and Levon (Mom and Dad) Observation 3
Beatriz Pilar and David (Mom and Dad) Observation
and interview
2
Nash Taylor and Todd (Mom and Dad) Observation 2
James Cathy (Mom)* Observation 1
Madeline Teresa (Mom)* Observation 1
Thomas Daisy (Mom)* Observation
and interview
2
Stephanie Marisa and Nelson (Mom and Dad) Observation
and interview
1
Pargev Karun (Mom)* Observation
and interview
2
Raul^ Nina (Mom)* Interview N/A
Talen^ Kameelah (Mom)* Interview N/A
Luke^ Debra and Rob (Mom and Dad) Interview N/A
Danny Alice and Peter (Mom and Dad) Interview N/A
Isaac^ Sara (Mom)* Interview N/A
Kevin^ Rebecca (Mom)* Interview N/A
Eric Anne (Mom)* Interview N/A
Chike^ Esosa (Mom)* Interview N/A
Cory^ Perri (Mom)* Interview N/A
Sam Donna (Mom)* Interview N/A
River Mark (Dad)** Interview N/A
Moira^ Vanessa (Mom)** Interview N/A

* Married parent, but only one parent observed or interviewed.
** Single or divorced parent.
^ Child was present during interview.

262
Participant Observation
My primary sites of participant observation were family homes. Home-based
participant observations were approximately 90 minutes in length. At each home
observation (conducted October 2012 to September 2013), I shadowed one of two
Rossmore/Evergreen SLPs, Rachel and Caren (pseudonyms), who conduct assistive
technology trainings at homes. Table A.4 denotes which children were clients of Rachel
and Caren. One or both parents were present for all observations when the child was
present. Home observations were naturalistic in nature: others present sometimes
included siblings, grandparents, household aids, and other therapists (e.g. applied
behavior analysis [ABA] therapists for autistic children).

Table A.4. Child clients of Rachel and Caren
Rachel Caren
Paul Michael Madeline
Beatriz Thomas
Nash Sam
James
Stephanie
Pargev

The SLPs and families arranged the appointments independent of my schedule. I
could only attend appointments that did not conflict with my other school responsibilities,
including taking graduate classes, serving as a teaching assistant for undergraduate
classes, and being a research assistant on other faculty research projects. Frequent
appointment cancellations by both SLPs and parents (due to issues such as illness, jury
duty, miscommunication, and forgetfulness) required flexibility in my schedule. For
instance, one time I drove over twenty miles to attend an appointment at Beatriz’

263
apartment only to discover that her iPad had been left at school and the training session
was cancelled. In all, I conducted participant observations with eight families, each for
1-3 at-home technology training sessions.
In addition to homes, I also tried to hang out with Rossmore parents by
conducting observations at other sites. I observed three hour-long group meetings held at
Rossmore for adolescents with developmental disabilities who use high-tech AAC
systems (the iPad and Proloquo2Go, well as dedicated devices such as those produced by
Dynavox). At each meeting, 2-4 young people were present along with one or two of
their parents. I attended a 90-minute parent training session for Proloquo2Go, also held
at Rossmore. In both February 2013 and February 2014, I participated in an annual
daylong assistive technology conference organized by Evergreen. Parents (some of
whom I observed and/or interviewed), educators, therapists, and assistive technology
users attended the conference. The conference not only provided me with up-to-date
information about AAC devices (including presentations by adult AAC users), but an
additional context to observe parents learning how to use the technology.
Beyond events hosted by Evergreen or Rossmore, I also spent time at events in
the Los Angeles area concerning AAC, assistive technology, and disability that were
open to the public. In September 2013, I attended a gathering held at USC to celebrate
the launch of the website Interacting with Autism, an informative website on autism
produced by USC faculty and students. The event featured expert panels and activities
for children. Attendees included local families, autistic individuals, healthcare providers,
educators, and disability advocates. In spring of 2012 and 2013, I also attended the
Abilities Expo in Downtown Los Angeles, where I gathered additional information about

264
current trends in assistive technology development and spoke with assistive technology
users and experts.

Parent Interviews
I conducted 17 semi-structured depth interviews with parents. Fifteen of these
were one-time interviews with families, and I conducted two interviews (an initial and a
follow-up) with one family. Interviews generally took place at families’ homes or at
coffee shops. One parent, Donna, whom I had met already met in person at the annual
Evergreen assistive technology conference, asked for a remote interview by phone
(instead of in person) because she was “dealing with some medical problems” with Sam.
Later, Donna had to postpone a second time because Sam had been sent to the emergency
room. I learned to expect the unexpected, and to follow parents leads in terms of how I
could fit best into their schedules and routines. For example, Donna asked that I text her
before I called so that the ring of the family’s landline phone would not wake up a
sleeping Sam.
Parent interviews lasted from one hour to two and a half hours. Parents were
asked open-ended questions about the process by which they obtained their child’s iPad,
their experiences with the iPad thus far, and their engagement with other media and
technology in the home and on the move (see Table A.5). Following the interview, most
parents received a family background information form to either fill out immediately or
mail back to me in a self-addressed stamped envelope at a later time. I erred though in
not also presenting this information sheet to families whom I only observed and did not

265
interview (4 families in total), so demographic information among these parents is limited
and based solely on my observations.

Table A.5. Selected questions from parent interviews
What is the “origin story” for your child’s iPad with the Proloquo2Go app installed?

What do you like or dislike about the iPad? About Proloquo2Go?

For what iPad apps does your child use at home, besides Proloquo2Go?

What other media and technology does your child use at home?

Have you ever sought out more information about the iPad? About Proloquo2Go? What
resources have you found helpful?

Who does your child usually use media or technology with?

Do you have any advice for parents in a position similar to you?

Assistive Technology/AAC Professional Interviews
While I got to spend a great deal of time with Rachel and Caren, I wanted to
speak directly with speech-language pathologists and assistive technology experts that
were staffed by school districts. I conducted additional interviews with six assistive
technology professionals staffed across two different school districts within the Los
Angeles area. Each had knowledge of their district’s deployment of the iPad and
Proloquo2Go as assistive technologies. These interviews provided necessary background
for understanding the role of school districts in shaping children’s out-of-school use of
the iPad and Proloquo2Go. I spoke with the assistive technology directors for two
different school districts, as well as four AAC specialists from one of those school
districts, one of whom I interviewed twice. These interviewees were asked questions

266
regarding their district’s processes and protocols for managing the use of iPads as AAC
devices, their experiences working with parents, and challenges in the transfer of the
child’s iPad between home and school locales (see Table A.6). Interviews ranged from
40-90 minutes, and took place either at a coffee shop, in administrative offices, or on
school grounds (before school, after school, and during lunch breaks).

Table A.6. Selected questions from assistive technology and AAC professional interviews
Within your school district, how does a parent obtain an iPad equipped with
Proloquo2Go for use as an AAC device?

Do you notice any differences between parents who purchase their own iPad with
Proloquo2Go for their child to use versus those who obtain it through the school district
(e.g. in terms of their experiences working with the school, attitudes towards
technology)?

What do you think are the pros and cons of a child using the iPad and/or Proloquo2Go for
AAC compared to other dedicated AAC devices?

How do you think the process by which a child obtains an iPad as an AAC device
through your school district could be improved?

Analysis
Interviews with parents and assistive technology/AAC professionals were audio
recorded and transcribed verbatim, and analyzed along with comprehensive field notes
compiled immediately after each interview and during each observation. I applied Taylor
and Bogdan’s (1998) “constant comparative” method approach to data analysis, coding
throughout the course of fieldwork and paying close attention to patterns that I noticed
emerging (such as distinctions among parents by social class). In developing grounded
theory (Charmaz, 1983), I employed open and selective coding and recoding of the data
in order to identify concepts and categories (Glaser & Strauss, 1967; Strauss & Corbin,

267
1998). Such an approach to qualitative data analysis allows for issues and topics to arise
through natural conversation, as opposed to pre-ordained variables imposed by the
researcher. For example, my interest in how parents’ understood the cases on their
child’s iPad (see Chapter 2)—an otherwise invisible aspect as the technology—emerged
from observations; as a result, I began to ask other parents about iPad cases in subsequent
interviews.

Research Limitations
Although this research develops a greater understanding of how parents
understand media and technology use among their children with communication
disabilities, there are a number of limitations to the work presented in this dissertation.
The first is the limited sample size of twenty families. It would be impossible to make
general claims about the parents of all children with complex communication needs. This
may not reflect the full scope of children’s activities with media and technology and
parents’ interpretations of these activities. This project is an attempt to understand the
process by which individual and collective uses of the iPad, as a form of AAC, shapes
and is shaped the social practices, spaces, and routines of families’ everyday lives.
Second, my findings are primarily based on parent reports. I did directly observe
many children as part of home observations and interviews, but was not able to conduct
extensive ethnographic work in homes, nor conduct interviews with non-speaking youth.
Incorporating children’s “own voices” in research—a core concern of sociologists of
childhood (James, Jenks, & Prout, 1998)—is a complex undertaking with respect to non-
speaking children who use AAC (Komulainen, 2007; Wickenden, 2011).

268
Third, another limitation is that among parents who agreed to participate in the
study, there is a skew towards parents of children on the autism spectrum. This may
explain the large number of boys in the study as well, as autism is underdiagnosed in the
US among girls for various complex reasons (Jack, 2014). Fourth, my participant
observation work in homes is limited to shadowing speech-language pathologists, as
opposed to another kind of therapist that might employ AAC in their work with children,
such as an occupational or ABA therapist. Fifth, my observations also do not extend into
classrooms; rather, I pay attention to the ways in which parents discuss issues related to
formal education.
Finally, perhaps the greatest shortcoming is that the insights that I present in this
dissertation are limited to the extent that I do not identifying as having a disability, am
not the child of someone with a disability, the parent of a child with a disability, or a
parent at all. I also identify as white, female, and middle class. In conducting this
research, I held myself responsible to the parents who told me their stories, sensitive to
the power inherent in interpreting and sharing their experiences through my analytical
lens. While the policies and perceptions my research participants encountered may not
directly affect me, all families are indirectly interconnected despite structures that
systematically isolate and remove certain families from the center of society. Disability
is central to the human experience, and the study of disability, families, and
communication technologies has important implications for humanity in its entirety.

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Asset Metadata

Creator Alper, Meryl (author)

Core Title Home screen home: how parents of children with disabilities navigate family media use

School Annenberg School for Communication

Degree Doctor of Philosophy

Degree Program Communication

Publication Date 06/17/2017

Defense Date 03/09/2015

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag assistive technology,augmentative and alternative communication,autism,capital,children,communication,cultural capital,disability,families,media,OAI-PMH Harvest,social capital,synthetic speech,technology

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Jenkins, Henry (committee chair), Ananny, Mike (committee member), Haller, Beth (committee member), Seiter, Ellen (committee member)

Creator Email malper@usc.edu,merylalper@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c3-572712

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Legacy Identifier etd-AlperMeryl-3473.pdf

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Document Type Dissertation

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