 Hi. Hi, everyone. Thank you for being here. It's my great pleasure and privilege to introduce today's speakers. Elizabeth Alcesser. Liz Alcesser has been since 2012 an assistant professor in the Media School at Indiana University, Bloomington, as well as an affiliate faculty member in the Department of Gender and Women's Studies and the Cultural Studies Program. However, 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 media 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. And prior to joining the faculty of 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 children's media industry. As an undergraduate at Northwestern, she was the lab assistant manager in the NSF-funded Children's Digital Media Center, slash Digital Kids Lab. She interned with the Education and Research Department at Sesame Workshop in New York. Maybe you've heard of it. In 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 Nihao Kai-Yin and the Fresh Beat Band. Meryl is the author of Digital Youth with Disabilities, MIT Press 2014, and Giving Voice, available behind you, Mobile Communication, Disability and Inequality, MIT Press this year. Today, I've also seen her writing in The Guardian, The Atlantic, Motherboard, and Wired. Ryan Boudish 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 Herdikt. 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 relating to internet censorship, corporate transparency about government surveillance, and multi-stakeholder governance mechanisms. I should also say 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 sort of lives lived with disability 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. Great. Awesome. So, Liz and I will be 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 so, 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, one that will pull and threads through each of our discussions, but thinking that it pulls upon ability, collective notions, and kind of actions of what it means to participate. So, my presentation is can we talk about voice? So, in my work, just to kind of also pull together some of 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 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 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 what you might think of as the traditional sense, use something that's sort of like what Stephen Hawking who's pictured in the above picture here, what he uses, but instead, 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've pictured on the bottom here is an iPad with this one app called Proloquo2Go, and I will point here to the screen. You can select text and icons and it'll fill in this top white bar and you can press the bar and speech will be output, and the language, the software 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, for those unfamiliar, some of these technologies are called, sometimes they're called voice output communication aids, speech generating devices or augmentative and alternative communication devices, which ironically is a mouthful to say. So, I'm just going to say AAC for shorthand in this talk. So, because the users of these technologies, like I mentioned, 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 Los Angeles 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 output or sorry, electronic voice generation. So, voiceless here, 2012, pretty similar headline. This is about the iPad giving voice to kids with autism. So, 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 about first 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'm 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. And I think this picture here, some gets at that. So it's a picture taken by Tom Olin at an ADA March in the early 90s. So people of various racial backgrounds, people with various physical and whatnot disabilities marching under a banner of Martin Luther King Jr's quote, injustice anywhere is a threat to justice everywhere. So I think that there is something that's 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 what it is to be human. And then even within that, I would say because there's the MLK quote here, about the intersections of disability with other kinds of identities and other potentialities for marginalization as well. So with that being said, what does it mean to give voice to the voiceless? What does giving voice mean? So we might locate its origins biblically. So in the new international version, many different biblical versions, 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 illusions about voice and speaking, there's 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. So this is a screenshot of the Society of Professional Journalists, their code of ethics. And one line from this is that journalists, 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. 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. Tends to represent something broken for technology to repair. So consider this is Microsoft Super Bowl commercial from 2014. So long after Apple had its big Super Bowl commercial in the 80s, took until 2014 to Microsoft to have its entry point. And disability is front and center here. It features NFL player Steve Gleason 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 Gleason himself providing the voice over for the commercial. So we can stay and I would encourage you, we don't have the time for me to play the commercial, but I 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 agency and self representation. That voicelessness 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 then gets figured as this sort of direct opportunity, this frictionless opportunity for expression. So there's 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. So 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, pictured here and back there, 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 pro-loquo to go app kids about three to 13, and I spent some time observing them, getting trained at how to use the technologies at home with speech pathologists. I follow them to different user groups that young people would use to talk to one another and 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 kind of better, more resourced and less resourced school districts, larger and smaller ones to get a sense of what were the other kinds of systems that were shaping the adoption use or potentially non-use of these technologies. So in terms of culture, and I'm just gonna give you three examples kind of 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 everybody 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 that 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 communication system, they wouldn't use it because they don't speak it, it's a big issue. We are stuck just doing school base 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 your voice is given, but then it's also simultaneously muted. With respect to law, assistive technologies are also quite bluntly, born 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 wanna take a greater look at that. But this is something that Danny's dad Peter tapped into when he talked about a fear of how 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 got a gun on him, no cop in the world's 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 reflected in this broader discourse. So giving voice can also run the risk of being silenced and quite literally permanently. And lastly, all of this has to be understood in a larger policy backdrop. So school district policies what I found is tend to promote their financial investments, protecting those more so than promoting students continued growth. This is something that Moira's mom Vanessa relate in a story. So in Southern California kids have been throwing the iPads apparently into pools, this is what the mom was told. And because of that the school decided that they were not gonna 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, social capital. So Vanessa had said to me the school district changed their policy. Said that iPads only remained on campus which was in violation of Moira's IEP. I wrote them, she even wrote them, she 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 wanna send this iPad to school. I of course gave it to her and it didn't come home. So we could say here also voice, yes, voice is given, but then it's taken away. So how does this kind of 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, there's a historian, Catherine Ott. She's at the Smithsonian, written an introduction to this book. It's a picture of the cover of that book. It's called Artificial Parts, Practical Lives, Modern History of Prosthetics. And she writes, focus on the materiality of the body. Not only or exclusively it's 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. 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 and sort of big P politics, so like electoral politics. And little P politics, which is power. And it's sort of its various manifestations. And those two things are related to one another, but it's 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. So with big P politics, we need to keep voices attached to citizens and our democracy. Despite Donald Trump's demagogic insistence, that he literally is 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 RNC convention. Trump pledges, the headline is a picture of Trump sort of smiling in a very large close up version of him smiling in the background projected on the screen. It says, Trump pledges order and says, I am your voice. Let's think about that though in relation to ways that people with disabilities potentially have some quibbles with that. So this is a screenshot from CNN's projection of at the DNC self-advocate, disabled self-advocate Anastasia Simoza directly responding to Trump's call. Saying, Donald Trump doesn't hear me, 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 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 a lot of interest in voice activated technology, so Suri, 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 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 are 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 social, cultural, and economic resources. And having access to which is unevenly distributed. And as my book, it centers the iPad, but it's interesting because I am really interested in what some people might call an edge case or a sort of outside case. But I really believe that there is something to think about marginalization and participation that is really actually super central 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 and how we build our technology or else the risk is tantamount to dismantling. Or if we can say that the structure of democracy has been stable to begin with, also an open question. But at stake is really not only which voices get to speak, but who's thought to have a voice to speak with in the first place. That's my talk. Let's turn it over now to Liz. Yeah. Yeah. So thank you for having me here today. I'm happy to, thank you, have a chance to talk about this work in conjunction with Merrill'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, 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 actually reading from my phone because I get lost on a large piece of paper. So to start off here, we have some images reflecting a sort of pervasive utopianism in talking about the internet, worldwide web, and related technologies. At the top right is an image from MCI's 1997 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 in 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 stories of technology are often stories of endless possibility. In restricted access, I'm attempting to intervene in some of these celebrations by investigating digital media accessibility, the processes by which digital media is made usable 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 that 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 simply transformed into a means of upholding those very inequalities. Now what is media accessibility, web accessibility? This is something that I often illustrate with this slide, which is just a screenshot of a 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 as to facilitate the use of consumer technologies with the kinds of adaptive and assistive technologies that Merrill 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's 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 from what we see in the public sphere. And so in these terms, accessibility may be understood as highly bureaucratic and technical. It creates a kind of baseline from which there's the possibility that people with disabilities may then access and use digital media. In thinking about accessibility, however, it's 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. We 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 were visually impaired. So we see access deployed in various contexts. And 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 that 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 if they connect your house, even if you don't, say, have a telephone. Affordability, this is a subsidized service in some way, therefore it is more accessible. Or consumer choice. You have access to 590 cable channels, whether you want them all or not. So access is a flexible term. But when we center disability and accessibility in their specialized senses, the gaps in some of these literatures and usages emerge. In fact, it seems that access is inherently variable, dependent upon bodies, contexts, and a host of other factors. When we say, check Facebook. We're potentially engaged in a wide range of technological and social practices that vary from person to person. As argued by Canadian disability scholar Tanya Tichkowski, 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 a 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 sort of a jumping off point for thinking about how then can we study access as an infinitely variable, 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 sort of an 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 use the scissors to cut up something in your kitchen. You might use the safety pins 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 the access kit, I thought about what are some categories of questions? Ways we can dig into access that will allow us to look, perhaps, through some different lenses at how that access is being created. And 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 favorite examples in the book is the case of Tumblr. As some of you probably know, Tumblr is a multimedia micro-blogging platform that is characterized by the sharing or re-blogging 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 e-commerce 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 markup 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 used these technologies and why and what was frustrating. And in these interviews, I've got on the one hand people telling me that they contacted 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 to group pages such as accessibility fail and accessibility as other places where they were in fact finding community and using this platform. In some of these cases, users were adopting and adapting Tumblr, sharing experiences of microaggressions, 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 thought of as a matter of law, policy, or technology, or the provision of services in a kind of charity model, many users were much more likely to talk about it in terms of effective 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 non-technical 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, 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 inner relationships 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, policymakers, industries, and others. I've illustrated this concluding point with a screenshot of actress Teal Sherer who created a web series called My Gimpy Life, which she funded through Kickstarter. So already we're seeing sort of a host of contemporary digital media technologies brought to bear. And in this case, Sherer also prioritized disability community and access on-screen and off. The web series had an on-screen credit for the person who produced the closed 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 enabled 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 we have some time. 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 all of our work is constantly playing catch-up with lived experience. And Ryan, I'm thinking of your work with Herdick is in some way always trying to close that gap between lived experiences of blockages or clogs or censorship online and the point at which there's greater public awareness about those blockages. And scholarship is by design 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 regards to lived experience in each of your projects. And maybe we can start with Ryan to bring you into the conversation. Yeah, sure. So I'll just first preface my response by saying, you know, as Dylan mentioned in my introduction, you know, I spend my sort of work days thinking about access to technology and who controls these sort of elements of the web and the internet and our technologies. But from 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 Merrill today really interesting and important. And 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 Merrill was saying was 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, you know, that as Merrill's example showed, you know, that people can use iPads, which are consumer technologies, to do things that, you know, earlier might have required, you know, going through a medical specialist or getting very expensive medical technologies. And, you know, in the hearing aid market, there's 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's a lot of pros and cons to that approach. You know, there's the potential that it could lower the costs that a lot of people who don't get hearing aids can suddenly get hearing aids but, you know, 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 Merrill's question or prompt around and say, you know, in what ways is all technology reinforcing societal and structural inequalities? And, you know, I think Sarah Hendrin has talked about 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. And 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 that, you know, to talk about access, you know, give can potentially allow people who either physically can't drive or, you know, they're too old to drive, you know, allows them to have mobility, you know, as, you know, ride-sharing services will start using it, you know, there's the potential to open up access for lots of people and yet ride-sharing or 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's an example of where technology, taken out of the sort of disability context, but something which you could characterize at a very basic level is accessibility technology is itself potentially going to reproduce the structural inequalities, the places like the favelas in Brazil that are very heavily populated but are not mapped will not have access to these technologies. And so anyway, I'm not quite sure that answers your question about lagness, but that's at least, you know, I think that there's just some bigger questions to me about technology in general and how that's reproducing these inequalities and, you know, and I think it does sort of raise these questions of, you know, from a lagginess perspective that, you know, we have to sort of think of these things in their broader context and not just, you know, in a disability context anymore. I'll just say something very briefly because then I want to make sure that we have time for questions but just talking about lag and delay and that not, you know, whether that's a negative or a positive thing or an inevitable thing but I immediately thought of when you brought up, you know, sort of the relational, the act of access and 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 be then 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 but the patience that is required for a conversation partner to even if you've got a technology that works well, it's like top of the line, it's fully charged, that's a whole other thing. I can't talk about the thing that doesn't have any juice that the patience is required of somebody else to follow a pace of conversation that might not be a one that they themselves and they themselves enact or used to having with another person. So that process, that patience and that's something that is learned that is something that somebody who doesn't have a speech disability would like have to be able to become better equipped at. So think about the kinds of social and cultural and personal equipment that is needed for participation. Like that gets sort of added to the list here. Just thinking about temporality in that way. It's just a small comment. I'm from Colombia and as we are not, I mean, as we don't have that many resources, so we have to come up with creative solutions. So the main problem in these kind of issues is the economy 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 a sign language. So a person who is deaf could connect to an app and this remote person can translate from sign language. So he can, I mean, the deaf person can present an exam or have a consultation with a doctor or any kind of communication. So this is one solution of the economy of scale. And the other one was we buy a country license for a screen reader. So I think one license is like $1,000 per person per year. But if you buy a country license, it's less than $1 per person per year or per computer per year. Because we buy thousands and thousands of licenses, so we can install a license in every internet cafe, in every school, for example. And people are not paying, actually they are not paying because it's so cheap to charge for. But for example, schools pay a little bit and we gather all this money and buy a country license, which is tremendously more cheaper than buy one by one. Yeah, I hadn't heard about country licenses. That's really fascinating, I want to know more. But I will say 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 9-1-1 when you're relying on an app to dial it for you. So yeah, there are ways in which that is changing. That was a good question. I just had a question about the differences between adults and kids and particularly, I think that there is often talking about voice and voiceless and many times, kids are voiceless either because they simply aren't at the emotional or intellectual place where they can talk about what's going on or because legally their parents speak for them. I know from my personal experience when I was five or six, 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. 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 up there. I'd be interested to hear about how these issues of voice and voiceless and access are maybe different or different challenges emerge when you're dealing with adults versus kids. I'll hand this to Marilyn just a second. I've worked primarily with adults and in part that's because when we are looking at disability spaces, there's a lot of attention often to K-12 education and to particularly what can be done to help children and there's often a drop-off in terms of when those children become adults and 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 perspective on what happens after that and that's less structured space, but obviously research on kids. Yeah, I think the kid focus is partly just related to my expertise in background more than anything else and even then like I, 13, tends to become my cut-off. 14 in the US, you're supposed 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 sort of the fluidity with which sort of radical spaces can potentially be created related to interest or related to different cultural spaces like theater performances that have sort of sensory inclusivity sort of mixed age, 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 that there's the parents that are quoted I think to not overprivilege while the quotas may that I use here in the book there's a lot of descriptors of behavior 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 because some of these were not using the whole point was that they didn't have a reliable access to communication and so the challenges of then doing that work outside of like triangulating different sort of behaviors in different kinds of expressions or vocalizations or you know in kinds of spaces I'd say though for like my next book project which is focused on the experiences of autistic youth growing up in the digital age and different kinds of ways in which communication happens I'm grappling with that right now in terms of the interviews that I'm doing with directly with kids the ways that I talk with them about their media practices but again the ways in which some of that is oral and some of that is not and so part of that is sometimes the challenge of presenting field work to an audience and the legibility of that as opposed to just sort of having a video or another kind of recording so that sort of gets at like our methods and the ways in which we then like make our research our evidence visible and the ways in which certain kind of visibilities can unintentionally privilege or reflect certain ways in which the research was or was not conducted but yeah Hi, I have one comment about the giving voice to the voices I really like the point about how voices is seen as a mean for agency and self presentation and I was just thinking about if you change the headline to something different instead of giving voice to the voices to something like listen to the unlistenable it will be a totally different like focus on instead of on the person who needs to be given the voices it won't be on behalf of us to train our listening capacity so that's also I don't know whether you've thought about that Yeah, so listening and speaking and the dynamics between those things or 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 Dreyer talks about the partial promise of voice so voice is in completion the partiality of it to fully say that we have any kind of grasp or pin downableness of it because that understanding of respect of a message being acted on and a promise being kept and that's kind of partly in larger public sphere discussions but I think that that point about listening whether one is able to be listened to or not again we can think about that in terms of like a biological individual level, a social level a political, you know what the mechanisms are for feedback but also some of that can also reinforce who's in power in the first place and in what ways can that still enforce a and us them a powerless, again an essentializing idea of having and not having of giving and not giving Hi I have a comment and 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 74 year old blind man who lost his sight at 32 and I learned like a 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 classroom and he had to go in a special room and if they didn't have the jaws they 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 the Massachusetts disability I say oh just go to the bookstore and get a volume 6 or version 6 of the book for the class and the one they had for the Braille was like version 3 you know things like things that we just take for granted it's just very humbling another time I was at an event there was a company I will not play it up but it was 3 play media they 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 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 a secure code is an afterthought it's like yeah we'll do it later disability for many places is like yeah yeah whatever if you know it's not an education or government is there anything that can be done to teach like the CS students that are coming out of course 6 at MIT here at Harvard the people who are before they start their careers to incorporate it into design so it's not yeah yeah for those you know they can make it as part of how you learn how to create so you will not have these incredible disparities in you know accessibility 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 of that it's more like you're not adding on disability or adding like the recovery of individuals with disabilities in computing history engineering history is really central I think to that idea of not developing a sort of charity model of disability pedagogy in a field like CS and 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 right once you've learned how to do everything else maybe you'll look at this but maybe you probably won't and that's something that's borne out actually in 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 the process the International Association of Accessibility Professionals is a young organization maybe for five years old now 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 and then of course there's a whole world of universal design and design for disability and design literatures focused on how to incorporate diverse users at an early stage I was just gonna say that I'm actually 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 in the mainstream and I think this gets back to this convergence point there's so much more focus right now on human-machine interactions 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 like the improvements that have been made over the last several years in computer vision technology like all of those things I think will help on this lagginess question that I think it's 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 the sort of afterthought problems and they're not approaching it in the mindset of how do we solve problems for people with disabilities but I think the applications are getting closer and closer so that it's not such a leap to figure out we design this thing now we have to figure out how to apply it in a whole new context but it's actually like 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 on that so just a quick comment on that last bit there is an industrial thing that's called teach access if you do a web search on this that's a consortium 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 to be able to key that up a little bit so it's something to look at so I just had a question a lot of the regulatory issues and accessibility have to do with things around either livelihoods or access to government services or these things that are really very instrumental in sort of getting things done in your life right and I'm wondering if you could speak a little bit to issues around entertainment or just sociality just interacting because as much more of our lives become mediated then the access to these things become much more critical to just our lives and I don't see as much discussion of that in a lot of the disability discussion at least I think the place where 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 communication and video accessibility act right took some steps towards prioritizing that kind of access but I think it's a really interesting 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 our other people so there's certainly some tension there 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 and 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 W3C I'll just say there's a chapter in the book that's about centering on like the question is like what is an iPad for and that 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 other person might use it for and a lot of things that were related to issues of our own taste related to issues of ownership the idea of whether you had to pull different of those pieces of hardware to delineate and make distinctions between which of those things were for but for me the real lightning strike and 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 this thing that the kid enjoyed that motivated them to use this app in the first place to communicate but there was lots of values about well kids in their iPads and their boobs and like a shutdown and the ways in which 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 back against that person in any way so yes the idea especially because an iPad designed to be a consumption technology not necessarily for creation and somewhat for circulation but just thinking about the people wanting to take advantage of all of these things that can be done but some of the professional pushbacks around expertise and it's a mainstream technology but it entered the home through the teachings of somebody with professionalization certain sort of things attached to that so more of that in the book okay thanks everyone again there are oops 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 Marilyn will be here now a round of applause for her