Can We Talk?: An Open Forum on Disability, Technology, and Inclusion
featuring Professors Elizabeth Ellcessor and Meryl Alper with guests
Tuesday, May 23 at 12:00 pm
Berkman Center for Internet & Society at Harvard University
This event was co-hosted by the Berkman Klein Center for Internet & Society at Harvard University and Harvard Law School Dean of Student's Office, Accessibility Services.
Can we talk? The question (a favorite prompt of the late comedian Joan Rivers) evokes a feeling of being intimately and sometimes uncomfortably open, frank, and honest, both with others and ourselves. This event, a conversation between Prof. Elizabeth Ellcessor (Indiana University) and Prof. Meryl Alper (Northeastern University, Berkman Klein Center), points the question at the topic of disability, technology, and inclusion in public and private, and in digital and digitally-mediated spaces. Ryan Budish (Berkman Klein Center) and Dylan Mulvin (Microsoft Research) serve as discussants.
Can we talk?, with respect to different degrees of potential access (in its social, cultural, and political forms) that new media constrains and affords for individuals with disabilities. Can we talk?, with respect to who does and does not take part in the ongoing research, development, and critique of accessible communication technologies. Can we talk?, with respect to whether or not talking, or its corollary "voice," is an adequate metaphor for conversation, participation, and agency?
Alper and Ellcessor draw upon their recent respective books, Giving Voice: Mobile Communication, Disability, and Inequality (MIT Press, 2017) and Restricted Access: Media, Disability, and the Politics of Participation (NYU Press, 2016). Both books will be available for purchase and signing.
If you have any questions about arriving at or getting into this event, please do not hesitate to reach out to Carey Andersen at firstname.lastname@example.org or at 617-495-7547. Wasserstein Hall, Room 3018 is fully accessible.
Elizabeth (Liz) Ellcessor is an assistant professor in the Media School at Indiana University, Bloomington.
Her research focuses on the ways that digital media technologies can both expand and limit people’s access to culture and civil society. Bringing together cultural studies, disability studies, and critical media industry studies, she uses a range of qualitative and historical methods. Focusing on those on the margins–particularly people with disabilities–exposes gaps in mainstream narratives about technological progress, user participation, and engagement with mediated culture.
Additionally, Liz has conducted research on performances of online identity, including social media celebrity, activism, and deception.
Liz teaches a range of courses, from introductory undergraduate courses in media studies to specialized doctoral seminars. Her courses aim to make the familiar strange, providing new details and perspectives with which students can reconsider taken for granted elements of their digitally mediated lives. Additionally, she uses strategies of universal design to make courses accessible for as many students as possible, incorporating captioned content, flexible assignment structures and timelines, and multiple forms of student participation.
Liz is a founding co-chair of the Media, Science, and Technology Studies scholarly interest group of the Society for Cinema and Media Studies.
Meryl Alper is an Assistant Professor of Communication Studies at Northeastern University and a Faculty Associate with the Berkman Klein Center for Internet and Society at Harvard University. Prior to joining the faculty at Northeastern, she earned her doctoral and master’s degrees from the Annenberg School for Communication and Journalism at the University of Southern California. She also holds a bachelor’s degree in Communication Studies and History from Northwestern University, as well as a certificate in Early Childhood Education from UCLA.
Alper’s research explores the social implications of communication technologies for individuals with disabilities, children, and families. In particular, she studies the opportunities and challenges that media and technology provide young people with developmental disabilities and their families in the digital age. She integrates theoretical, empirical, and archival methods in this work and employs a historical, sociological, and critical/cultural perspective.
Alper has worked for over a decade in the children’s media industry. As an undergraduate at Northwestern, she was Lab Assistant Manager in the NSF-funded Children’s Digital Media Center/Digital-Kids Lab and interned in the Education & Research Department at Sesame Workshop in New York. Post graduation, she worked in Los Angeles as a Research Manager for Nick Jr., conducting formative research for the Emmy-nominated educational preschool television series Ni Hao, Kai-lan and The Fresh Beat Band.
Alper is the author of Digital Youth with Disabilities (MIT Press, 2014) and Giving Voice: Mobile Communication, Disability, and Inequality (MIT Press, 2017). Her research has been published in New Media & Society, International Journal of Communication, and IEEE Annals of the History ofComputing, among other journals. She has been awarded four Top Paper awards by the International Communication Association for her sole-authored work across multiple ICA divisions. Her research and popular writing has also been featured in a range of venues, including The Guardian, The Atlantic, Motherboard, and Wired.
Dylan Mulvin is a Postdoctoral Researcher at Microsoft Research New England and a member of the Social Media Collective. He joined the collective after completing his PhD at McGill University. Dylan is a historian of technology, media, and computing whose work investigates the design and maintenance of new technologies. He examines how engineers, scientists, technicians, and bureaucrats make decisions about how to develop shared understandings of the world.
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TRANSCRIPT: Can We Talk?
DYLAN: Hi Everyone. Thank you for being here. It's my great pleasure and privilege to introduce today's speakers. Liz Ellcessor has been since an Assistant Professor in the Media School at Indiana University, Bloomington, as well as an affiliate faculty member in the department of of Gender and Women's Studies in the Cultural Studies program. She will be starting a position in the Department of Media Studies at the University of Virginia very, very shortly.
Liz works at the intersection of Cultural Studies, Media Studies and Disability Studies. Her research and teaching interests include media history, access, and literacy, as well as social media, participatory culture, celebrity, and performance of the self. She is the author of Restricted Access: media disability and the politics of participation from NYU press last year, and co-editor with Bill Kirkpatrick of Disability Media Studies, which is forthcoming from NYU.
Meryl Alper is an Assistant Professor of Communication Studies at Northeastern University and a faculty associate here at The Berkman Klein Center. Prior to joining the faculty at Northeastern she earned her Doctorate and Master's degrees from the Annenberg School of Communication and Journalism at the University of Southern California. Meryl has worked for over a decade in the children's media industry. As an undergraduate at Northwestern she was the lab assistant manager in the NSF-funded Children's Digital Media Center/Digital Kids Lab. She interned with the education and research department at Sesame Workshop in New York. Maybe you've heard of it. [Laughter from the audience]. Post graduation she worked in LA as a research manager for Nick Jr. conducting formative research for the Emmy-nominated educational preschool television series Ni Hao Ki Ian and the Fresh Beat Band. Meryl is the author of Digital Youth with Disabilities, MIT Press, and Giving Voice: mobile communication disability and inequality, MIT Press, this year. You may have also seen her writing in The Guardian, The Atlantic, Motherboard, and Wired.
Ryan Budish is a Senior Researcher at the Berkman Klein Center. Ryan joined the Berkman Klein Center in 2011 as a Fellow and the Project Director of Herdict. In his time here Ryan has contributed policy and legal analysis to a number of projects and reports and he's led several significant initiatives related to internet censorship, corporate transparency about government surveillance, and multi stakeholder governance mechanisms.
I should also say that Meryl and Liz have each published outstanding books in the past year. They're in the center of my field at least and while Giving Voice by Meryl and Restricted Access by Liz offer rigorous analyses of lives lived with disabilities in the 21st Century, they're also offering very fundamental reconsiderations of what it means to study media and communication and technology, and both books are totally worth your time and it's a great privilege to have you all here today.
So I'm going to hand it over to Meryl and we'll start today's event.
MERYL: So Liz and I we're playing off one another a little bit in the sense that each of our books focuses particularly on a key term. Mine "voice" and Liz's "Access" and as you might have read in the introduction to this event on the event site, "Can we talk?" we think is a really evocative question. We'll pull in threads from each of our discussions. It pulls upon ability, collective notions and actions of what it means to participate. So my presentation is Can We Talk… About Voice?
So in my work, just to pull together what Dylan so graciously said, I study the social implications of communication technology with a focus on the role of digital and mobile media in the lives of young people, but particularly in the lives of young people with developmental disabilities. So that's in particular autistic youth and young people with significant communication impairments particularly related to something called childhood apraxia of speech, which is basically when the brain has difficulty coordinating the the body parts that are needed to talk. So I think about communication across different levels. So some of these young people instead of talking in ways that you might think of in the traditional sense, use some thing like what Stephen Hawking uses, but nowadays instead of having to necessarily use a device that is bigger, more expensive, breaks, and takes a long time to replace, you could potentially use… What I have pictured on the bottom here is an iPad with this one app called Proloquo2Go and you can select text and icons and it will fill in this top white bar and you can press the bar and speech will be output. The language the software uses is a little less sophisticated than what can be created in a bigger computer than that, but it can do a lot of work. So with those unfamiliar, some of these technologies, sometimes they're called voice output communication aids speech generating devices or augmentative and alternative communication devices, which is ironically a mouthful to say. So I'm just going to say AAC for short.
So because the users of these technologies don't talk in the traditional sense and because they use speech generating devices to communicate, the popular press has historically referred to these types of technologies in a way in which the users of them get figured as voiceless. So the top headline says, it's from the LA Times, it says “Electronic Help for the Handicapped: The Voiceless Break Their Silence”. That's a headline about a technology called the Canon Communicator. So Canon the company you might think of as cameras produced a device that was specifically focused on voice and voice output. Or, sorry, electronic voice generation. Pretty similar headline. This is about the iPad giving voice to kids with autism. But the question I'm really interested in is “What does it mean for technology to give voice to the voiceless?” And, “Who does that phrase actually help or hurt in the process?”
So to answer that question I'm going to discuss three things. I'm going to talk first about the broader significance of this phrase "Giving voice to the voiceless". It's a phrase you might have heard but not necessarily taken a critical angle towards. Why it's an important concept to critique especially for people with disabilities. And third, how thinking differently about voice and voicelessness in this way, I think, can more broadly create meaningful change around technology and ethical considerations more broadly.
Speaking of ethics... So before I go much further I also want to make clear that I do not personally identify as having a disability. I am also a white, cis, straight, upper-middle class woman. So I'm sensitive to the power inherent in interpreting and sharing the experiences of others through my analytic lens. But I also believe that disability is at the heart of the human experience.
I think this picture here gets at that. So it's a picture taken by Tom Olin at an ADA march in the early 90s. People of various racial backgrounds, people with various physical and what not disabilities marching under a banner of Martin Luther King Jr.'s quote "Injustice anywhere is a threat to justice everywhere." So I think that something that is really brought out in this picture is that despite structures that systematically isolate and remove people with disabilities from the center of society, we have to think about the ways in which how we define the ways it means to be human and then even within that I would say because there is the MLK quote here about the intersections of disability with other kinds of identities and other potentialities for marginalization as well. With that being said, what does it mean to give voice to the voiceless? What does "giving voice" mean?
We might locate its origins biblically. In the New International version Proverbs 31:8 says, “Speak up for those who cannot speak for themselves for the rights of all who are destitute.” So not only do you get allusions about voice and speaking but also a class dimension to this as well. We might locate in terms of how this is traced through different professional groups, different actors in the public sphere, journalists. This a screenshot of the Society of Professional Journalists… Their Code of Ethics. And one line of this is that a key journalistic duty is to be vigilant and courageous about holding those with power accountable. Give voice to the voiceless.
Moving from just sort of actors to also thinking about other kinds of technologies we can think about an endless list of things. Whether it's civic media, Twitter, or Open Data as pictured here as sort of giving voice. This is from the Open Data Institute Summit 2015. The speaker's talk is "Citizen empowerment giving a voice to the voiceless." All too often though we consider this background, disability becomes instrumental for another purpose outside of just disability focused issues. It tends to represent something broken for technology to repair. So consider this is Microsoft's Super Bowl commercial from 2014. So long after Apple had its big Super Bowl commercial in the 90s it took until 2014 for Microsoft to have its entry point and disability is front and center here. It features NFL player Steve Gleeson who lost the ability to produce oral speech due to ALS and the ad proclaims that the Microsoft Surface Pro which is pictured here has given voice to the voiceless. And this gets exemplified by Gleeson himself providing the voiceover for the commercial. So we can say and I don't have the time to play the commercial but encourage you to take a look at it in its entirety but we can say then that giving voice to the voiceless means a couple of things. It means that voice is used as a metaphor for for agency and self-representation, that voicelessness is is imagined as a stable and natural category so the voiceless is a thing that we can locate and as a sort of immutable thing, and technology is figured as a direct opportunity, this frictionless opportunity, for expression. So there is a lot to critique about each of those kinds of claims. But why do I think it's particularly important to do so? Particularly at this moment in time. That's because based on the ethnographic research that I conducted despite these widespread claims to "give voice to the voiceless" communication technologies that are intended to universally empower are still subject to disempowering structural inequalities and especially for people with disabilities.
So in my book "Giving Voice" I argue that efforts to better include disabled individuals within society through primarily technological interventions when all we do is fetishize and focus on the technology for whatever kind of commercial or affective reasons, we miss the opportunity to take into account all the other ways in which culture, law, policy and even the design of these technologies themselves can marginalize and exclude. So the book is based on a 16 month ethnographic study that I conducted of young people who use the iPad and that Proloquo2Go app. Kids about 3 to 13. I spent some time observing them getting trained how to use the technologies at home with speech pathologists, I followed them to different user groups that young people would use to talk to one another in, I went to parent conferences. I also started to interview different kinds of assistive technology administrators that were in the local Southern California area and lots of variations across more resourced and less resourced school districts, larger and small ones, to get a sense of what were the other kinds of systems that were shaping the adoption, use or potentially the non-use of these technologies.
So in terms of culture I'm just going to go through three examples quickly. Most speech generating devices are in English. The ones that are given to kids in US schools. At home that is not something that everyone uses to speak. You automatically can create a disconnect there between what a home culture is and what a school culture is. So one specialist I talked to said, "There are hundreds of languages in these schools. One of the kids I work with at home his parents speak Korean. Any kind of assistive communication system they wouldn't use it because they don't speak it. It's a big issue. We are stuck just doing school-based, which is fine, that's our job, but it's hard. It's hard to support them across the board because we can't.” So we could say that here voice is given but then it's also simultaneously muted.
With respect to law, assistive technologies are also quite bluntly borne of a world in which half of the people who die at the hands of police have a disability. There's a 2016 report from the Ruderman Family Foundation if you want to take a greater look at that. But this is something that Danny's dad Peter tapped into when he talked about a fear that a police officer might mistake his son reaching for his communication device as reaching for a weapon. So he said "I need him to be able to gesture 'yes' and 'no'. If a cop's asking him questions and has got a gun on him no cop in the world is going to allow him to grab a talker." So this awareness of the limits of any given piece of technology in a particular context around justice and injustice was something that participants were keenly aware of. That is not necessarily something that is reflected in this broader discourse. So giving voice can also run the risk of being silenced. Quite literally permanently.
Lastly all of this has to be understood in a larger policy backdrop. So school district policies what I found tend to promote their financial investments protecting those more so than promoting students' continued growth. This is something that Moira's mom Vanessa related to in her story. So in Southern California kids had been throwing the iPads into pools this is what the mom was told and because of that the school decided that they were not going to allow the kids to take those iPads off campus even though they were federally mandated to provide the child a way in which to communicate with others. So we're bounding that within the school. And the ability to challenge that is completely shaped by one's access to other kinds of resources: financial aid, legal assistance, and social capital. So Vanessa said to me, "The school district changed their policy and said that iPads only remained on campus,” which was in voilation of Moira's IEP. I wrote them and said 'This is in violation, I'm asking that you give me a window of opportunity to purchase her a device for the home.’ One morning I was like, 'I don't want to send this iPad to school.' I of course gave it to her and it didn't come home."
So we could say here also yes voice is given but then it's taken away. So how does one particular kind of case get at some of these larger frameworks with which we understand technology and ethics. So my overall takeaway is that we should keep voices attached to people. So I'm drawing here on an historian, Katherine Oft, who's at the Smithsonian. She's written an introduction to this book, this is a picture of the cover, it's called Artificial Parts Practical Lives Modern Histories of Prosthetics and she writes, "Focus on the materiality of the body not only or exclusively its abstract and metaphoric meanings. Keeping prostheses attached to people limits the kinds of claims and interpretive leaps a writer can make." So I think as well staying very close to the body, staying very close to the material and embodied aspects of voice is the only way for us to understand the uses and abuses of voice in relation to other kinds of inequalities and injustices.
I will just go through two applications of this in terms of what I use with my students to talk about politics in two ways: politics in sort of 'Big P Politics' so electoral politics and 'little p politics' which is power and its various manifestations. And those two things are related to one another but its a simple way to kind of split it up. Trigger warning there is a picture of Donald Trump on the next slide. I'm just letting you know. [Audience laughs]. So with Big P Politics we need to keep voices attached to citizens in our democracy. Despite Donald Trump's demagogic insistence that he is literally our voice This is New York Times, July 22nd, 2016. Front page of newyorktimes.com. This is right after Trump's acceptance speech at the INC Convention "Trump Pledges..." Headline, it's a picture of Trump smiling and a very large close up version of him smiling in the background projected on the screen, and it says "Trump Pledges Order and Says I Am Your Voice". Let's think about that in relation to ways in which people with disabilities potentially have some quibbles with that. So this is a screenshot from CNN's projection of at the DNC a disabled self-advocate Anastasia Somoza directly responding to Trump's call saying, “Donald Trump doesn't hear me he doesn't see me and he definitely doesn't speak for me.” So this pulling through of ways in which voice is getting used and abused in particular ways, it is not something that people with disabilities are... They are the ones that we need to look to and draw upon sort of histories of resources in which to grapple with the uses of language in ways that more often exclude than include.
On a technological aspect nowadays there's a lot of interest in voice activated technologies so Siri and Alexa and in some ways those can be really accessible. Those can add, if you have motor limitations, other ways to access. But we have to think about what kinds of voices get picked up. This is just a headline that says "Voice is the next big platform..." But then here's another headline from Scientific American "Why Siri won't listen to millions of people with disabilities.” There are particular ways in which voices are recognized or are not recognized. Let alone just the kinds of voices that can be produced by a given piece of technology. So ideas about the normal here and what it means to have a voice or more critical considerations. So to wrap up, technologies that give a voice to the voiceless can also reproduce structural inequalities. Having a voice and being heard are not necessarily the same things at all. And they're also not just about technology. But also about social cultural and economic resources. And having access to which is unevenly distributed.
My book centers the iPad but it's interesting because I am really interested in what some people might call an edge case or you know a sort of outside case but I really believe there's something to think about marginalization and participation that is really actually super central to to what we're all trying to get at in terms of understanding what it means to participate. So we need to keep voices materially attached to people in how we build our technology or else the risk is tantamount to dismantling... Or if we can say the structure of democracy has been stable to begin with... Also an open question. But at stake is not only which voices get to speak but who's thought to have a voice to speak with in the first place. And that's my talk. [Applause from the audience].
LIZ: Alright so thank you for having me here today. I am happy to have a chance to talk about this work in conjunction with Meryl's work because we've been batting around some of the same ideas regarding access, voice, participation, and technology and disability. I've been framing my work as essentially cultural studies of technology. I'm attempting to understand how technologies reflect and reproduce particular dynamics of power and how users of technologies can push back upon those constructions and challenge these sort of received ways in which technologies are developed along certain assumptions. I'm going to be reading from my phone because I get lost on a large piece of paper.
To start off here we have some images reflecting a sort of pervasive utopianism in talking about the internet World Wide Web and related technologies. At the top right is an image from MCI's "Anthem Commercial". This young person appears speaking in American Sign Language right before text that reads "There are no infirmities." The TIME 2006 "Person of the Year" was You with a big reflective cover. And then this bottom photo is a screenshot from a Yahoo! advertisement from 2009 called "It's You" prioritizing this kind of individual empowerment and excitement around new technologies. At various points these technologies have been understood as democratizing globalizing something that can eradicate racial gender and disability difference and something that can open economic and social opportunities. From the hype of cyberspace to the celebrations of Web 2.0 we see that stories of technology are often stories of endless possibility. In "Restricted Access" I am attempting to intervene in some of these celebrations. by investigating digital media accessibility the processes by which digital media is made useable by people with disabilities and arguing for the necessity of conceptualizing access in a way that will be more variable and open opportunity in new ways. So after all I argue if digital media only open up these opportunities to people who are already relatively privileged in terms of their ability to access technology then their progressive potential remains unrealized. If not transformed into a means of upholding those varying inequalities.
Now what is media accessibility, web accessibility? This is something I often illustrate with this slide which is just a screen shot of the homepage of The New York Times as run through the Web Accessibility and Minds Online Accessibility Checker. This is an automatic software tool that will check the HTML and associated code of a web page and flag with little red or yellow icons where there might be a problem. So in this case the page is being flagged for not describing the image that reads "New York Times", for not describing the small images, and for having some incorrect form usage. Now accessibility is a fascinating case because it is a very granular process. Essentially web content accessibility comes out of non-governmental policy sources such as the World Wide Web Consortium. It has also been taken up in various legal contexts so there are laws in the United States that require accessibility in some contexts and there are arguments that the ADA requires web accessibility in many contexts. However, these policies are written in such a way that to facilitate the use of consumer technology with the kinds of adaptive and assistive technologies that Meryl gestured towards. Things like screen readers, alternative input devices like tongue typers, joysticks, these technologies are often key in allowing people with disabilities to use technology, and accessibility ensures that software will work with those technologies. However, accessibility generally has to be implemented by individual companies, developers, website operators, and is therefore a highly distributed phenomenon. There is no automatic way of understanding where this happens. Thus a lot of my research has involved tracking digital media accessibility through the policy makers people working with the World Wide Web Consortium, people working in government, in academic contexts, as well as with developers, consultants sometimes marketing departments are in charge of accessibility, internal standards, a lot of major corporations have their own accessibility standards that are different to what we see in the public sphere, and so in these terms accessibility may be understood in highly bureaucratic and technical ways. It creates a kind of base line from which there is a possibility that people with disabilities may then access and use digital media.
In thinking about accessibility, however, it is important to think about the terminology. Because "accessibility" like "access" is an often-used term that is not always attached to these kinds of specialized meanings. I often see accessibility invoked to refer to new possibilities. The graphical user interface made desktop computing more accessible to a large number of people. Even as it very much shut down access for people who are visually impaired. Right, so we use access deployed in various contexts. Additionally, access to media and information technologies has been addressed in a wide range of academic literatures. From digital divides work to work on public broadcasting community television media literacy and media policy work. But in all of these areas access is dominantly figured as something which is "had". Do you "have" access? A sort of unitary and universally desired endpoint. Do you have access? It is good to have access. And in addition to this sort of positive and linear framing the concept of access is often deployed in such a way as to stand in for "availability" (you have access to the telephone lines as they connect to your house even if you don't have a telephone), "affordability" (this is a subsidized service so therefore in some sort of way therefore it is more accessible), or "consumer choice" (you have access to cable channels whether you want them all or not). So "access" is a flexible term. But when we center disability and accessibility and their specialized senses the gaps in some of these literatures and usages emerge. In fact, it seems that access is inherently variable. It's dependant upon bodies, contacts, and a host of other factors. When we say "check Facebook" we are potentially engaged in a wide range of technological and social practices that vary from person to person. As argued by Canadian disabilities scholar Tanya Titchkosky quote "every single instance of life can be regarded as tied to access. To do anything is to have some form of access." Thus rather than think of access as a binary or linear progression disability studies encourages us to conceive of it as a continually relationally produced means of engaging with the world. So we don't "have" access we are "doing" access.
Now in "Restricted Access" I use this a sort of jumping off point for thinking about how then can we study access as an infinitely variable and complicated phenomenon. Right? This is starting to sound impossible if every construction of access is different. And thus I've been using the metaphor of a kind of "Access Kit" illustrated here with a sewing kit with a pair of scissors, some safety pins, needles, a thimble, other things you use for sewing... I'm not a sewer. However, I use this metaphor because I like the idea of a kit in that you can use it all together to do what it's intended for. You can use this to sew. Or you can take pieces and parts and use them differently. You might cut up something in your kitchen, you might use the safety pin to make a punk t-shirt or signal your safety in a post Donald Trump world. You may recombine these in different ways. And thus in sort of figuring access kit what are some sort of categories of questions? What are some sort of ways that we can dig into access that will allow us to look through some different lenses at how that access is being created?
I'm not going to go into detail here except to say that I sort of loosely grouped these into categories of regulation, use, form, content, and experience. Which I can talk about later. And together they encourage us to think about access as a relational phenomenon. Drawing attention to what a cultural studies perspective might call the articulations of bodies, technologies, institutions, geographies, and social identities. So access is not one thing but many. Not an end point but also not a beginning. Nico Carpentier has referred to access as a precondition for participation before we can participate we must access but through the study of digital media accessibility for disability it's become evident to me that the production of access is an ongoing part of participation in a digitally mediated society.
Now one of my favourite examples in the book is the case of Tumblr. As some of you probably know Tumblr is a multimedia microblogging platform that is characterized by the sharing or reblogging of posts across the network the formation of interest groups and a lesser emphasis on individual identity display. Than many social networks. It is however populated by user generated content and thus not obviously bound by the legal and technical requirements faced in government educational or ecommerce spaces. Perhaps as a result Tumblr is formally inaccessible. It is difficult to add alternate text to images even if you wanted to and knew how. It features infinite scroll which can be a challenge for many assistive technologies and it uses very limited mark up features to indicate importance. Additionally, the content is highly variable and often animated. Adding additional challenges from an accessibility perspective. So from a sort of top down perspective the inaccessibility of Tumblr seems like a problem. However, in my work I've tried to couple the institutional perspective with a more on the ground user perspective. I did roughly 25 interviews with disabled users about how they use these technologies and why and what was frustrating. In these interviews I've got on the one hand people telling me that they contact Tumblr and talked about the accessibility policies and were just totally rebuffed. Tumblr was not interested in talking to them did not change anything. However, they also pointed towards group pages such as Accessibility Fail and F Yeah Accessibility as other places they were in fact finding community and using this platform. In some of these cases users were adopting and adapting Tumblr sharing experiences of micro aggressions sharing accessibility knowledge teaching each other workarounds by which to make a site more accessible. Furthermore, this kind of grassroots accessibility revealed some different meanings of access and the values associated with it.
While accessibility is often through of as a matter of law policy or technology or the provision of services and a kind of charity model many users were much more likely to talk about it in terms of affective and cultural dimensions. Many prioritized feeling welcomed rather than merely accommodated or being included as members of a community rather than as afterthoughts. Or having their nontechnical needs met. For instance many disabled Tumblr users praised the site because its large social justice community meant that trigger warnings were commonly used. Trigger warnings or as we saw with Donald Trump are a brief indication of when and how content might be upsetting for someone with a particular kind of trauma and they're well beyond the scope of technological accessibility policy. However, as one interviewee told me "Trigger warnings make a site accessible to me." Indicating respect for the emotional and social needs that can often accompany disability.
Building out of such examples I end "Restricted Access" by talking about cultural accessibility as a means of moving towards a more accessible and just future. This moves beyond sort of technocentric notions of accessibility or accommodation and aims to highlight the interrelationships among technological and economic access, cultural representation and production, and access to community in the public sphere. Not simply universal design, cultural accessibility prioritizes the ongoing perspectives and visibility of people with disabilities and it may best be achieved through sort of participatory collaborations between users, policy makers, industries, and others.
I've illustrated this concluding point with a screen shot of actress Teal Shearer who created a web series called "My Gimpy Life" which she funded through Kickstarter. So already we're seeing a sort of host of contemporary digital media technologies brought to bear and in this case Shearer also prioritized disability community and access both on screen and off. The web series had an onscreen credit to the person who produced the close captioning. The Kickstarter page developed over time into more of a community space than a fundraising space and we see a range of relationships and connections forming that potentially enable the formation of community and the movement into a larger civic and public sphere from inclusive cultural spaces.
Ultimately then I would argue that access is not simply a prerequisite to participation, access and participation depend upon one another. Just as access enables participation so does increased participation by diverse people make possible the expansion of access. And I will wrap it up there so that we have some time. [Audience applause].
DYLAN: Okay I'm going to start with one question for the three of you and then we can open it up as quickly as possible to Q&A. So it strikes me that constantly all of our work is constantly playing catch up with lived experience and Ryan I'm thinking of your work with Herdict is in some way is always trying to close that gap between lived experiences of blockages or clogs or censorship online and the point at which there is greater public awareness about those blockages. And scholarship by design is sort of laggy because of the time it takes to dwell on things and the time it takes to publish things so I wonder how each of you think about lagginess with regard to lived experience in each of your projects. Maybe we can start with Ryan.
RYAN: So I'll just first preface my response by saying as Dylan mentioned in my introduction I spend my work days thinking about access to technology and who controls these sort of elements of the web and the internet and our technologies but in my personal life as someone who wears hearing aids I think a lot sort of in the very specific use case of how that technology enables and limits me personally in different ways. And so I found the discussion from Liz and Meryl really interesting and important. So on this question of lagginess you know one of the things that really jumps out at me and I think picks up on something that Meryl was saying was that this question of you know technology reproducing structural inequalities and something that I think is on that point is interesting to me is that I see a lot of convergence going on in technologies that as Meryl's example showed that people can use iPads which are consumer technologies to do things that earlier might have required going through a medical specialist or getting very expensive medical technologies and in the hearing aid market there is a lot of movement now to allow companies to sell things that aren't quite hearing aids but do essentially everything that a hearing aid could do and there is a lot of pros and cons to that approach you know there's the potential that it could lower the cost that a lot of people that don't get hearing aids could suddenly get hearing aids but no longer are they having it fine tuned by a medical professional and all of that and so as you converge sort of mainstream technology and technology that helps people with disabilities in some ways I think that you can turn Meryl's question into or prompt around and say in what ways is all technology reinforcing societal and structural inequalities and you know to Sarah Hendren has talked about how all technology is assistive technology. You know we're not naturally born with the ability to get our emails on our wrists and you know and yet technology enables us to do that. So in what ways is technology that all of us are using in assistive ways reproducing things that maybe we should be taking a closer look at? One example that comes to mind is how autonomous vehicles are certainly something you know to talk about access can potentially allow people who either physically can't drive or they're too old to drive allows them to have mobility as ride sharing services will start using it there is the potential to open up access for lots of people and yet ride sharing and autonomous vehicles often rely very heavily on mapping and so parts of the world are simply not mapped. And those places don't get access. And so there is an example of where technology taken out of the disability context but something that you could characterize at a very basic level as accessibility technology is itself going to potentially reproduce the structural inequalities that places like the favelas in Brazil are very heavily populated but are not mapped will not have access to these technologies. I'm not quite sure that answers your question about lagginess but there are just some bigger questions to me about technology in general and how that's reproducing these inequalities and I think it does raise these questions of you know from a lagginess perspective that we have to sort of think of these things in their broader context and not just in a disability context.
MERYL: I'll just say something very briefly because then I want to make sure we have time for questions but just talking about lag and delay and whether that's a negative or a positive thing or an inevitable thing but I immediately thought of when you brought up you know the relational or the sort of act of access it is a process and not just a product. Thinking about with speech generating devices that it can take a while to create a message for it to then be output for somebody to say. The fluidity with which one might be able to potentially depending on what kind of motor impairment they might or might not have the patience that is required for a conversation partner even if you've got a technology that works well it's top of the line it's fully charged that's a whole other thing can't talk if the thing doesn't have any juice. that the patience that is required of somebody else to follow a pace of conversation that might not be that one that they themselves enact or are use to having with another person. So that process that patience and that is something that is learned and something that somebody who doesn't have a speech disability would have to be able to become better at equipped at. So think about the kinds of personal social and cultural equipment that is needed for participation and that gets sort of like added to the list here just thinking about temporality in that way.
QUESTION FROM AUDIENCE: It's just a small comment. I'm from Columbia. We don't have that many resources so we have to come up with creative solutions. The main problem with these kinds of issues is the economies of scale. As the population is not big the market is not providing solutions for them. So for example in the case of deaf people... we create this relay center with sign language. So a person who is deaf could connect to an app and this remote person can translate from sign language so the deaf person can present an exam or have a consultation with a doctor or rely any kind of communication so this is one example of a solution to economies of scale. The other is we buy a country license for a screen reader. So one license is I think $1000 per person per year but if you buy a country license where it's less than $1 per person per year or per computer per year… We buy thousands of thousands of licenses so we can install a license in every internet cafe in every school for example. People are not paying because it's so cheap to charge for so for example the school pays a little and we gather all this money and buy a country license which is tremendously cheaper than paying individually.
LIZ: I hadn't heard about country licenses. That's really fascinating, I want to know more. But in terms of scale we may think about the sort of things that Ryan brought up with mainstreaming as being one way in which mainstream technologies are taking on assistive functions which enables a different kind of scaling When we are talking about assistive technologies that are developed as such they're often very expensive because there's a small market and a lot of research that goes into them. When those can be deployed in consumer devices some of those costs go down but as I think Ryan indicated sometimes oversight goes down as well. You don't have a medical professional adjusting the hearing aids I've been doing some research on emergency lately and you don't really have very good connections to when you're relying on an app to dial it for you. So there are ways in which that is changing.
RYAN: I just had a question about the differences between adults and kids and particularly I think that there is often you know talking about voice and voiceless you know many times kids are voiceless either simply because they aren't at the emotional or intellectual place where they can talk about what is going on or legally their parents speak for them and I know from my personal experience when I was or the last thing I wanted to be doing was wearing hearing aids and I didn't want people to ask me about them and if it was my choice I would have just taken them out but luckily it wasn't my choice and so I was wondering if you could talk about some of the differences that you guys have seen in particular you quoted some parents talking about their experiences I'd be interested to hear about how these issues of voice and voiceless and access are different or different challenges emerge when you're dealing with adults versus kids.
LIZ: I've worked primarily with adults and in part that's because when we are looking at disability spaces there is a lot of attention often to K education and to particularly what can be done to help children and there is often a drop off of when those children become adults. So by looking at online spaces where people with disabilities were engaging with one another and creating disability culture I think I get an interesting sort of perspective on what happens after that. Right in that sort of less structured space but obviously for research on kids.
MERYL: I think the kid focus is particularly just from my expertise and background more than anything Even then thirteen tends to become my cut off. Fourteen in the US you're meant to at least federally have a mandate to talk about transition to adulthood and that's where I sort of stop even though you can be like 30 and really be into Elmo and in my first book I talk in Digital Youth with Disabilities talk about age appropriateness and the fluidity with which radical spaces can potentially be created outside of related to interested or related to different cultural spaces like theater performances that have sensory inclusivity sort of mixed aged mixed abilities of all different sort of kinds and I think that with the book a lot of the research in terms of the kids there are the parents that are quoted In the book there are a lot of descriptors of behaviour and of interactions with kids and other individuals I did not have the skill to interview some of the kids in terms of their capacity to use ...the whole point was that they didn't have reliable access to communication and so the challenges of then doing that work outside of triangulating different sort of behaviours and different kinds of expressions vocalizations or excitements in kinds of spaces. I would say for my next book project which is focused on the experiences of autistic youth growing up in the digital age and different kinds of ways that communication happens I'm grappling with that right now in terms of in interviews that I'm doing directly with kids the ways that I talk with them about their media practices. Again some of that is oral and some of that is not and so part of that is sometimes the challenge of presenting fieldwork to an audience and the legibility of that as opposed to sort of just having a video or another kind of recording so that kind of gets at our methods and the ways in which we make our research visible and the ways in which certain kinds of visibilities can unintentionally privilege or reflect certain ways in which the research was or was not conducted.
QUESTION FROM THE AUDIENCE: Hi I have one comment about giving voice to the voiceless. I really liked the point about how voiceless is seen as a means for agency and self presentation. I was just thinking about if you change the headline to something different instead of giving voice to the voiceless to something like "Listen to the Unlistenable" it'll be a totally different focus on instead of on the person who needs to be given a voice it will be on behalf of us to train our listening capacity. So I don't know whether you've thought about that.
MERYL: Yeah so listening and speaking and the dynamics between those things are something that I talk about more in the book and that gets a little bit to... There's a phrase I really really love... A media justice scholar Tanya Draya talks about the partial promise of voice, so voice's incompletion, the partiality of it to fully say that we have any kind of grasp or pindownableness of it because that understanding of respect of a message being acted on and a promise being kept and that's partly in larger public sphere discussions, but I think that point about listening whether one is able to be listened to or not... again that's a... Begin to think about that in a biological individual level a social level a political... You know... what the mechanisms are for feedback but also some of that can sort of reinforce who's in power in the first place. And in what ways can that still enforce an us/them, an essentializing idea of having and not having of giving and not having.
QUESTION FROM THE AUDIENCE: Hi I have a comment then a question. I had the great pleasure and I will say some humility about ten years ago I was teaching at Northeastern for adults and one of my students was a year old blind man who lost his sight at 78 and I learned the day in the life of someone who is disabled and I had to rearrange my entire… how I was going to structure an exam, because we were in a computer class room and he had to go in a special room and if they didn't have the jaws then I would have to work with the Northeastern Disability Office to have someone come and have a reader read the exam to him and I learned something at the MA Disability… I just say "oh just go to the bookstore and go and get volume 6 of the book for the class" and the one they had for the brail was version 3. Things that we just take for granted. It's just very humbling.
Another time I was at an event where there was a company who had an event at the faculty club where they were talking and saying that many times when they have events here or classes they have closed captioning and they said that many times foreign students to help them learn English are using it. So that's like the number one reason in addition to disability. So my question here is... We're in an area where we have so many startups and just like until recently cyber security and writing secure code is an after thought... disability for many places is like "yeah, yeah, whatever..." Is there anything that can be done to teach the CS students that are coming to our courses, at MIT, here at Harvard, the people who before they start their careers to incorporate it into design so it's not... So let's take it and make it part of how you learn how to create. So you will not have these credible disparities in accessibility.
MERYL: One thing I would say is to read histories of people with disabilities as actors in the history of the development of computing. So the idea that it is more like you're not adding on disability... Like the recovery of people with disabilities in computing history or engineering history is really central to that idea of not developing a sort of charity model of disability pedagogy in a field like CS.
LIZ: I'll just add to that. I've done some work on how web accessibility was explicitly an afterthought in teaching web development for many many years. In the sense that it would be the last chapter of the book Once you've learnt to do everything else maybe you'll look at this but you probably won't. And that's something that's borne out of a lot of computer studies curriculum. They don't have courses on accessibility and basic lessons don't incorporate it as something that you do as part of a process. The International Association of Accessibility Professionals is a young organization maybe four or five years’ old that's explicitly attempting to address that by making some sort of best practices for CS education and offering some certifications for people who have actual training in accessibility to use once they go out into the job market. Then of course there is a whole world of universal design and design for disability and design literatures focused on how to incorporate diverse users at an early stage.
RYAN: I was just going to say that I am somewhat optimistic in this sense right now because I think that when you look at things like wearable technologies and there's so much more focus right now on the mainstream and I think this gets back to this kind of convergence point there is so much more focus right now on human-machine interaction and artificial intelligence and a lot of the technologies that are necessary to make wearables better to make augmented reality better to make autonomous vehicles better the improvements that have been made over the last several years in computer vision technology all of those things will help on this lagginess question I think it's that as more technology and these startups are thinking more about how machines interact with the physical world they're solving some of these problems that maybe have traditionally been have been the after thought problems and they're not approaching it in the mindset of how do we solve problems with people with disabilities but I think that the applications are getting closer and closer so that it's not such a leap to figure out oh we designed this thing now we have to figure out how to apply it in a whole new context but it's actually like oh we now have something that can identify what's going on in this room because we need it for our artificial intelligence technology and that makes it super easy to design something for someone with a visual impairment. So I'm optimistic.
QUESTION FROM AUDIENCE MEMBER: So just a quick comment on that last bit there is an industrial thing called Teach Access it's a consortium of a number of the big companies are trying to put together curricula to distribute throughout a bunch of universities for specifically integrating it into the CS curriculum. There's a lot of trouble there because a lot of the industries are trying to hire people and nobody knows anything about it and so this is actually a pull from industry to try and be able to key that up a little bit. So it's something to look at. I just had a question. A lot of the regulatory issues and the policy issues in accessibility have to do with things around either livelihoods or access to government services these things that are really very instrumental in getting things done in your life. I'm wonder if you could speak a little bit to issues around entertainment or just sociality of just interacting because as much more of our lives become mediated the access of these things become much more critical to just our lives. And I don't see a lot of discussion about that in a lot of disability discussions.
LIZ: I think the place you see the most discussion of that sort of thing is in captioning. Particularly in the past several years as Netflix captioned its content both the activism around that and then the 21st Century Video and Communication Act took some steps towards prioritizing that kind of access But I think it's a really intesting question to think about content and what we're gaining access to and making sure that access to video games and access to pornography are still kinds of access and people with disabilities are not less entitled to things that we think are morally dubious than are other people. So there's certainly some tension there right? Because government doesn't want to get into that if they can avoid it. But I'm encouraged because I see that that's also happening in informal ways. Major league baseball did what's called a structured negotiation where instead of a lawsuit they worked with disabled community members to make websites and streaming baseball games more accessible. So that's something where the mandate for MLB to be accessible is not really there but through some processes of introductions and collaboration you can actually get to places where that content is being addressed but it's very much not from the WC3.
MERYL: There's a chapter in the book that's about centering on... The question is like 'what is an iPad for?' There were these real tensions around whether an iPad was for that app exclusively or whether it was also for all of the other things that any of the other things that a person might use it for and a lot of things that were related to issues around taste related to issues of ownership the idea of whether you had multiple different pieces of those hardware to delineate and make distinctions between what each of those things are for but for me the real lightening strike in that was I was doing an observation and the speech pathologist I was with had very negative things to say about YouTube even though it was clearly something that the kid enjoyed that motivated them to use this app in the first place to communicate but there were lots of values about kids and their iPads and their YouTubes and are shut down and the ways that that particularly extra marginalized families who maybe didn't have access to or the ability to mobilize resources, I want to also phrase it as that way, around English language mobilize resources around community members who had other kinds of access to other kinds of resources social capital the cultural capital to push bak against that person in any way. Especially because an iPad is designed to be a consumption technology not necessarily for creation, and somewhat for circulation, just thinking about the people wanting to take advantage of all of these things that can be done but some of the professional push backs around expertise and it's a mainstream technology but it entered the home through the teachings of somebody with a professionalization and certain sort of things attached to that. More of that in the book.
DYLAN: Okay thanks every again there are books. I'll just say there are books for purchase at the back of the room and thank you so much for coming out. Liz and Meryl and Ryan will be here. A round of applause for our guests. [Audience applauses].