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Reimagining the Good Life With Disability: Communication, New Technology, and Humane Connections

Today, I’ll have the pleasure of chairing and participating in a panel at the Annual Conference of the International Communication Association with Gerard Goggin (University of Sydney), Elizabeth Ellcessor (Indiana University), and Katie Ellis (Curtin University) on the topic of “Reimagining the Good Life With Disability: Communication, New Technology, and Humane Connections.”

Goggin is speaking on “‘Oh Brave New World’: Disability, Media Justice, and the Question of Technology,” Ellcessor on “Hidden From View: Closed Captioning, Digital Labor, and Ideologies of Ability,” Ellis on “Power Games: Disability and Digital Television,” and myself on “Reconsidering Theories of ICT Adoption: The Case of Tablet-Based Augmentative and Alternative Communication Devices”

Below is the abstract of our panel:

Many deeply cherished notions of the “good life” are based on limiting notions of humans, things, and their environment. In particular, the good life is often imagined as a realm beyond illness, impairment, and especially, disability. With contemporary communication and new media, disability is even more seen as an impediment, barrier, or tragedy, to be overcome with digital technology. Regrettably, the very widely shared experience of disability, and its complex relationships with communications, is only rarely seen as a resource for how we achieve the good life, in our own lives and societies, now and in the future.

Indeed while various divisions within ICA increasingly engage with questions concerning marginalized populations—including issues of race, ethnicity, gender, sexuality, and diasporic populations—the study of disability and its relationship with social, cultural, and political life is stagnant. New media are often hailed as a great “equalizer” for people with disabilities. Such arguments though tend to obscure the complex ways in which disability and technology intersect for better and for worse in the lives of people with various disabilities from diverse backgrounds. However, with the rise of new social movements, disciplinary formations, and theories—such as critical disability studies—communication studies is slowly engaging with the challenges and new conceptual possibilities disability offers.

Accordingly in this theme panel, we take up pressing yet sorely neglected questions of disability and communication—in order to illuminate how we might see the good life in much more enabling, humane, and democratic ways. To do so, firstly, the panel discusses the state of the art of communications and disability research and theory. Secondly, the panel focuses on the ways in which contemporary information and communication technology shapes and is shaped by notions of disability and ability. Thirdly, the panel will identify and debate the lessons from disability and communication studies that help us to rethink the good life, especially in the new media environment.

Disability and Defamiliarizing the Smartphone: A Class Activity

(Originally posted on HASTAC.org)

In Spring 2013 and Fall 2013, I was the TA for “Cultures of New Media,” an undergraduate class in the USC Annenberg School for Communication and Journalism taught by Prof. Kathi Inman Berens.  The course focuses on how ubiquitous computing has contributed to a cultural shift in practices around privacy, storytelling, branding, and commerce.  In the latter third of the semester, the class focuses specifically on mobility and everyday life, critically reading works by Jason Farman (The Mobile Story, Mobile Interface Theory) and Sherry Turkle (Alone Together) among others.

Each semester, during this unit, I’ve incorporated a disability studies lens into a 90 min. guest lecture on mobility and mobile media.  Both times that I’ve taught it, I’ve regretted not having more time to go into the nuances of disability theory and models of disability.  Many students I’ve encountered have difficulty understanding technology as anything other than something that “liberates” or “revolutionizes” the lives of people with disabilities.  Most have never spent much time with assistive or adapted technologies (low-tech or high-tech, hardware or software).

In order to defamiliarize their smartphones and better understand the relationship between disability and communication technologies, I lead a simple activity at the end of the lecture in which I ask students (in a class of about 30 – but I think it could be done with a larger lecture class) to explore the accessibility options on their own phones.  (Anything that connects to the media and technologies that students regularly use seems to be a good entry point to critical or complex concepts.)  To be clear, this activity is not a voyeuristic or essentializing experiment whereby I ask them to “imagine” what it would be like to have a disability.  Rather, I want them to understand very concretely that the tools they use every day have certain politics – values, beliefs, and ideas reflecting positions of power and agency – and that these politics are reflected in what can and cannot be done with their phones in different contexts and under different circumstances (also known as affordances and constraints).

The following activity takes about 20-30 minutes:

Disability and Defamiliarizing the Smartphone

1. Break students up into small groups of 4-5.  Make sure that each group has a mix of make and models of phones (by brand, by generation, by smart or feature phone).

2. Ask students to find the accessibility settings on their own phones and play around (10-15 min).  They will inevitably ask you to show them where those settings are. Do not.  Instead, encourage them to spend a bit more time looking or ask someone in their group for help.  Move around the different groups if you can, getting a read for what they’re finding/not finding, discussing/not discussing, etc.

3. If they haven’t discovered it on their own, I particularly like to spend a few minutes showing them that one can hear the description of Apple’s emoji keyboard symbols if you type the emojis (e.g. in a text) when VoiceOver is enabled.  For anyone who has ever wondered what some of the more abstract emojis are supposed to mean, this is pretty cool.  It is also good way to get students to think about the design and coding of apps – namely, that VoiceOver reads the labels attributed to particular buttons.  Buttons that are unlabeled or mislabeled are not helpful if someone who is blind or visually impaired is using VoiceOver in order to navigate their phone.

Some prompting questions (10-15 min. discussion)

- Have you ever used any of these settings before?  For what purpose? (I’ve found that a number of students have used various accessibility settings when their phone breaks down in some manner.  A common occurrence is when the “Home” button on the iPhone fails to work.  This has ended up being a natural way to introduce the notion of universal design).

- Did playing around with these settings make you uncomfortable in any way?  How?  (Some students have expressed anxiety about accidentally getting their phones “stuck” in a certain setting and potentially “breaking” their phones.  This has evolved into conversations about invisibility and transparency in the design and functionality of communication technologies).

- What did you learn [about these technologies, about disability, about mobility] in a public, group setting that you might not have learned if you’d played around with these settings alone or in private?  (This gets into a conversation about public and private uses of communication technologies, and able-bodied privileges.  Each session, a number of people mention that they feel exposed or violated when they turn on the VoiceOver setting and they open up their text messages or Snapchat, and that the others standing around them can hear what they are reading).

- Does something from this activity remind you of the material you read for today or what we covered in this lecture? (A good concluding question to congeal some main ideas/key topics: the design and coding of apps; the politics of universal design; infrastructure, invisibility, and transparency; public/private; ableism)

Feel free to borrow this lesson – and I’d love to hear any ideas for modifications or suggestions for improvement in the comments section!

Bot I Never Thought It Would Happen To Me

Chances are, this is not my first encounter with a bot.  Bots now supposedly make up 61% of all web traffic.  From 2012 to 2013, there was an 8% increase in bots that can be described as “Other Impersonators,” which includes software that masks itself to appear legitimate when conducting security breaches.  Twitter is a notorious breeding ground for bots, which are the social media equivalent of collagen injections, plumping up the follower counts of clients who pay for the appearance of popularity.  There are also purposefully amusing Twitter bot accounts, like @tofu_product, which is sort of like having an automated conversation with yourself (or, at least, the self you present through your Tweets.)

But as someone who studies the social and cultural dimensions of communication technologies, I was a little taken aback today when I found @merylalper9, a Twitter account impersonating my own @merylalper, especially since I only discovered Bot Meryl eight months after her first tweet: “Anyone in Davis know how to play the piano and willing to give me lessons?”

I found her, naturally, by Googling myself—or rather, a Google Image search of myself (In 2014, we can all admit that we Google ourselves, right?)  When I searched, an unfamiliar image (below) caught my eye.  According to this Google Image search, it had been “Retweeted by Meryl Alper,” when I had done no such thing.

Definitely not "Retweeted by Meryl Alper."

The giveaway: Definitely not “Retweeted by Meryl Alper”

I’m more amused than upset over being impersonated by a Twitter bot.  Sure, @merylalper9 lifted my picture and bio right from my public Twitter profile, including a link to my professional-facing website (see both below).  But I suppose I’d be more offended if Bot Meryl had replaced my website in their Twitter bio with something spammier or NSFW.

Meryl

Meryl

bot3

Bot Meryl

There are subtle and not so subtle differences between @merylalper and @merylalper9, both cosmetic and substantive.  Bot Meryl didn’t lift my high-res profile photo directly, but rather is using a low-res thumbnail of that photo.  Some of Bot Meryl’s funnier insights (and how far they deviate from Not-Bot Meryl) include:

  • May 15, 2013: “Studying. I refuse to lose. I HAVE to win Military ball Queen.” (I’ve never participated in a beauty pageant, but I am pretty competitive.)
  • July 11, 2013: “#ImAttractedTo Guys who love sweet tea, their momma, and Jesus” (Real @merylalper, who is Jewish, would be more likely to tweet, “#ImAttractedTo Guys who love Manischewitz, their bubbe, and high holiday services.”)
  • June 9, 2013: “Feeling the effects of lack of sleep. I just put my jeans in the bin then added cherry pips on top. Bye jeans” (WTF is a “cherry pip”? Being sleep deprived and absent minded isn’t too far of a stretch though.)
  • August 5, 2013: “Led to:” (Nothing more after the semi-colon?  More poetic than I, Bot Meryl.

Suggestions for what to do with Bot Meryl poured into Facebook and Instagram after I (privately) posted about my discovery of her.  One friend advised me to retweet Bot Meryl, and see if she responded.  HASTAC’s Fiona Barnett suggested that I should make @merylalper99 and start impersonating @merylalper9.  I guess if you can’t bot ‘em, join ‘em, right?

While I live in Los Angeles, home of the celebrity and the celebrity impersonator, I don’t a have verified Twitter account with an emblematic blue checkmark next to my name.  For the rest of us non-celebs, I discovered that Twitter does have a mechanism for reporting impersonation accounts.

I am a bit concerned that Bot Meryl fools the untrained eye.  For example, I noticed that of Bot Meryl’s 6 followers, at least one of them is my former student (or rather, the alias Twitter account one of my students created for an in-class project last semester).

Clearly, not everyone on Twitter is who or what they seem to be, or for that matter, is even a person.  Twitter is a platform that encompasses many kinds of relationships between living and non-living things (a la Bruno Latour’s Actor Network Theory)—even those between horses and e-books (and Latour and his published writings).

I’m still left wondering what would make my Twitter profile attractive to the algorithms used by Bot Meryl’s creators?  What subjective judgments were made about me through my data and written in code?

I don’t think I’ll officially follow Bot Meryl, but I’m not quite ready to report her to Twitter yet either.  After all, she’ll make a good show-and-tell piece for the discussion section students in my Communication and Technology class during our week on bots, big data, and the quantified self.

Disability, Mobile Media, and Family Life

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

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

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

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

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

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

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

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

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

Best, Meryl

Looking Ahead to IDC 2013

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

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

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

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

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

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

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

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