hi hi everyone thank you for being here it's my great pleasure and privilege to introduce today's speakers Elizabeth LSS Earl is al Setzer has been since  an assistant professor in the media school Indiana University Bloomington as well as an affiliate faculty member in the Department of gender and women's studies in the cultural studies program however she will be starting a position in the Department of Media Studies to the University of Virginia very very shortly Liz works at the intersection of cultural media 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's 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 studies meets media studies or disability media studies sorry which is forthcoming from NYU Merrill Alper is an assistant professor of communication studies at Northeastern University and a faculty associate here at the berkland 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 Merrill 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 / digital kids lab and she interned with the education and research department at Sesame Workshop in New York maybe you've heard of it post-graduation she worked in the LA based los angeles as a research manager for Nick jr. conducting formative research for the emmy-nominated educational preschool television series Nihao KY Ian and The Fresh Beat Band Meryl is the author of digital youth with disabilities MIT press  and giving voice available behind you mobile communications disability and inequality MIT press this year you may have also seen her writing in The Guardian The Atlantic motherboard and wired Rian bhootish is a senior researcher at the Berkman Kline Center ryan joined the Berkman Kline Center in  as a fellow and the project director of her dict is 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 Maryland lives have each published outstanding books in the past year they're in the center of my field at least and while giving voice by Merrill and restricted access by Liz offer rigorous analyses of sort of lives lived with disability on st 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 awesome so listen I will playing off one another a little bit in a sense that each of our books focuses particularly on a key term mind voice and endless is access and so the 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 in threads through each of our discussions but thinking that it thinks pulls upon ability collective notions and kind of actions of what it means to participate so my presentation is can we talk about voice and 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 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 different levels so some of these young people and instead of talking and what you might think of as the traditional sense use something that's sort of like what even Hawking who's pictured in the via in the above picture here what he uses but instead and nowadays instead of having to necessarily we 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 a it's an iPad with this one app called proloquogo and I will point here to the to the screen you can select text and icons and it'll fill in this top white bar 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 and 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 for shorthand in this talk so because and the users of these technologies and like I mentioned don't talk in the traditional sense and because they use speech generating devices to communicate that 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 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 might think of it cameras produced a device that was specifically focused on on voice and voice output and our electronic voice kind of generation so voiceless here  pretty similar headline and 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 the phrase you might have heard and the not necessary we've 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 voiceless 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 th 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 and an ad a March in early s and so people of various racial backgrounds people with various and physical but not disabilities marching under a banner Martin Luther King Jr's quote injustice anywhere is a threat to justice everywhere so I think that there isn't something that's really brought out in this picture is that despite structures that systematically and 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 given within that I would say because there's 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 a new international version many different biblical versions proverbs   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 the class dimension to this as well we might locate in terms of how this is traced through different professional groups different act in the public sphere journalist so this is a screenshot of the Society of Professional Journalists their code of ethics in 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 a from the open data Institute summit  and speaker 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 and it tends to represent something broken for technology to repair and to consider this is Microsoft's Super Bowl commercial from  so long after Apple had hit its big Superbowl commercial in the s took until  to Microsoft to have its entry point and disabilities front and center here it features NFL players Steve Gleason who lost the ability to produce oral speech due to ALS 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 say and I and I would encourage you don't have the time for you to play the commercial but I encourage you to take a look at it in its entirety but we can say then that that giving voice to the voiceless means a couple things it means that voice and future is a metaphor for agency and self representation that voiceless miss 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 technologies then gets figured as this sort of 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 and trigger 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 you're in and that 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 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 -month ethnic ethnographic study that I conducted of young people who use the iPad and at proloquogo app kids about  to  and 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 are in 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 and to get a sense of what were the other kinds of systems that were shaping the adoption youths or potentially you know non use of these technologies so in terms of culture I'm scanning to see three examples kind of quickly and most speech generating devices are in English those ones that are particular 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 you said there are hundreds of languages in e schools one of the kids I work with at home his parents the Korean any kind of assistive communication to any kind of communication system they wouldn't use it because they don't speak it it's a big issue we are steps 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 you know given but then it's also simultaneously muted and with respect to law assistive technologies are also quite bluntly born of a word world in which half of the people who die at the hands of police have a disability there's a  report from the Ruderman Family Foundation if you want to take a greater look at that but this is something that Danny's dead 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 know if a cops asking him questions and 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 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 that I found tend to promote their financial investments protecting those more so than promoting students continued growth this is something that Maura'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 going to allow the kids to take those iPads off campus even though they were federally mandated to provide the child a a way in which to communicate with others so responding that within the school and the ability to challenge that is completely shaped by one's access to other kinds of resources financial a legal assistance social capital so Vanessa said to me the school district changed their policy so that iPads only remains on campus which was in violation of Moira's IEP I wrote them Stephen wrote that me 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 you're also Boise that voice is given then it's taken away so how do I set is this kind of one particular kind of case get at some of these larger frame looks frameworks with which we understand technology and ethics my overall takeaway is that we should keep voices attached to people and so I'm drawing here on there's a historian Catherine taught and Steffes myth Sounion written an introduction to this book it says this is 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 prosthesis attached to people limits the kinds of claims and interpretive leaps a writer can make and 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 in justices 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 politics or like electoral politics and little peak 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 in our democracy despite Donald Trump's demagogic insistence that he literally is our voice this is New York Times July nd  front page of New York Times calm this is right after Trump's acceptance speech at the at the RNC convention and Trump's pledges the headline is a picture of Trump sort of smiling in a very large closeup 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 have potentially have some quibbles with that so this is a screenshot from and CNN's projection of at the DNC at self-advocate disabled tilde self-advocate Anastasio Somoza 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 and draw upon for histories of resources in which to grapple with the uses of language in ways that more often exclude than include a technological aspect nowadays a lot of interesting voice-activated technology so Suri 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 so this is just a headline that says you know 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 the particular ways in which voices are recognized or not recognized and let alone just the kinds of voices that can be produced by a given piece of so ideas about the normal here and what it means to have a voice are more critical considerations so to wrap up and technologies that give a voice to the voiceless can also reproduce structural inequalities having a voice and being heard they're 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 and as the 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 you know a sort of outside case but I really believe that there is something to think about marginalization and participation that that is really actually super central to what we're all trying to get at in terms of understanding what it means to you to participate so we need to keep voices materially attached to people and how we build our technology or else the risk is you know tantamount to dismantling or if you know we can say that it's 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 whose thought to have a voice to speak with in the first place let's I talk turn it over now to it yeah yeah all right 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 world wide web and related technologies at the top right is an image from MC is  anthem commercial this young person appears speaking in American Sign Language right before text that reads there are no infirmities the time  Person of the Year was you with a big reflective cover and then the bottom photo is a screenshot from a Yahoo advertisement in  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 ability difference and something that can open economic and social opportunities from the hype of cyberspace to the celebrations of web . 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 home page of the New York Times as a run through the web accessibility in mind online accessibility checker this is an automatic software tool that will check the HTML and associated code of a web page and slag 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 context so there are laws in the United States that require accessibility and some con and there are arguments that the a da requires web accessibility in many contexts however these policies and are written in a such a way as to facilitate the use of consumer technologies with the kinds of adaptive and assistive technologies that Meryl dressed ur 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 policymakers people working with the web wide 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 a 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 and 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 right 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 literature's 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 end point 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  cable channels whether you want them all or not right so access is a flexible term but when we center disability and accessibility and their specialized senses the gaps in some of these literature's 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 Tania - Tchaikovsky quote every single instance of life can be regarded as tied to access to do anything is to have some form of access that's 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 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 symbol other things you use for sewing I'm not a sower 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 you know 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 and 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 what are some ways we can dig into access that will allow us to look perhaps through some different lenses and 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 endpoint but also not a beginning an eco-car pentia 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 shearing 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 e-commerce spaces perhaps as a result tumblr is formerly inaccessible it is difficult to add alternate text to images even if you wanted to and you 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 and 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  interviews with disabled users about how they use 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 eff 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 well while accessibility is often thought of as a matter of law policy or technology or the provision of services and the kind of charity model and many users are 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 part of a community rather than as afterthoughts or having their non-technical needs met for instance many disabled tumblr users praise to 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 is 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 techno centric 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 policymakers industries and others I've Illustrated this concluding point with a screen shot of actress Neil sharer 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 and Shearer also prioritized disability community and access on screen and off the web series had an on screen credit for the person who produce 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 increase participation by diverse people make possible the expansion of access and I will wrap it up there so we have some time ok I'm going to ask 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 the gear work with her dict 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 you know is by design sort of laggy because of like the time it takes to dwell on things all the time it takes to publish things so I wonder how each of you think about lag enos with regards to lived experience in in each of your projects and maybe we can start with Ryan bring you into the conversation yes sure um so I'll just first preface my response by saying you know as Dylan mentioned in in my introduction you know I spend my my sort of workday is thinking about about access to technology and who controls these sort of elements of the web and the internet and and our technologies but from on my 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 in different ways and so so I found the the discussion from from Liz and Meryl today really really interesting and and important and so on this question of lag eNOS you know one of the things that really jumps out at me and I think picks up on something that that Meryl was saying was this question of you know technology reproducing structural inequalities and and something that I think is is on that that point is interesting to me is that I see a lot of 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 in the 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 that a hearing aid could do and and there's 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 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 and all of that so as you converge sort of mainstream technology and technology that helps people with with disabilities in some ways I think that 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 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 and so so in what ways is technology that all of us are using an assistive Way's reproducing things that maybe we should be taking a closer look at you know one example that 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 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 you're 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 qualities 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 so anyway I'm not quite sure that answers your question about edginess but but but that's but that that's at least you know I think that there's just some bigger questions to me about technology in general and how how that's reproducing these inequalities and you know and I think it does sort of raise these questions of you know from a leg enos perspective that 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 I want to make sure 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 we're an inevitable thing but I would immediately thought of when you brought up you know sort of the relational be active access and it is a process and not just a product I'm 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 and the 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 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 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're they themselves and they themselves enact or used to have it with another person so that process that patience and that's something that has learned that is something that is something that somebody who doesn't have a speech disability would like have to be able to become better equipped at something about the kinds of social and cultural and personal equipment that is needed for participation like that gets sort of added to the built list here just thinking about temporality in that way yeah it's just a small comment and I'm from Colombia and as we are not I mean I ask we don't have that many resources so we have to came up with a creative solutions so the main problem in this kind of of issues is the economy of scale as a population is not big the market is not providing solution 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 and this remote person can translate it from sign language so he can I mean the the deaf person can present an exam or have a consultation with a doctor really any kind of communication so this is one solution of the economy scale and the other one was we we buy a country license for a screen reader so I think one license is like a thousand dollars per person per year but if you buy at a country license where is less than one dollar 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 is not paying actually there are no pain because it's so cheap to put charge for but for example school spends a little bit and we gather all this money and buy a control action which is tremendously more cheaper than thank a buy one by one yeah yeah and 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 I 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 and 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 and but as I think Ryan indicated sometimes oversight goes down as well you don't have a medical professional adjusting the hearing aids you and I've been doing some research on emergency lately and you don't really have very good connections to  you're relying on an app to dial it for you so yeah there are ways in which that is changing so I just had a question about the differences between adults and kids and particularly you know I think that there's often you know talking about voice and voiceless you know many times you know kids are voiceless either because they simply aren't at the you know emotional or intellectual place where they can you know talk about what's going on or because legally you know their parents speak for them and you know and I know from from my personal experience when I was like you know five or six like you know the last thing I wanted to be doing was wearing hearing aids and you know and I didn't want you know people to ask me about them and like if it was my choice I would have just taken them out but luckily it wasn't my choice and so you know I was wondering if you could talk about some of the differences that you guys have seen you know like in particularly you know you you you coated some parents talking about their experiences up there I'd be interested to hear about how these issues of voice and voiceless access you know maybe different or or different challenges emerge when you're dealing with adults versus kids yeah well 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 is a lot of attention often to k- 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 we I get an interesting sort of perspective on what happens after that right in that sort of less structured space but obviously research on kids yeah I mean I think the kids focus is partly just related to my expertise and background more than anything else and even then like I  tends to become by my cutoff  in the US you're supposed to at least federally have a mandate to talk about transition to adulthood that's where I sort of stop even though you can be like  and really begin to Elmo and I've talked in my first book I talked individual youth with disabilities talk about age appropriateness and sort of the fluidity with which sort of radical spaces can potentially be created outside it's like related to interests are related to different cultural spaces like like theater performances that are and have sort of sensory inclusivity and sort of mixed age abilities of all different sort of kinds and I think that with the book you know a lot of the research of my in terms of the kids that there's the parents that are quoted I think to not over privilege while the quota something that I use here in the book there's a lot of descriptors of like behavior and of interactions with kids and other individuals I did not have the skill to and to interview some of the kids in terms of their capacity to use because somebody says we're not using the whole point was that they didn't have it they reliable access to communication and so the challenge is of been doing that work outside of like big triangulating different sort of behaviors in different kinds of expressions or vocalizations or you know excitement in kinds of spaces I'd say before like my next book project which is focused on the experiences of autistic youth growing up in the digital age and 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 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 fieldwork to an audience and the legibility of that and as opposed to sort of hold having a video or another kind of recording so that should have gets that like our methods and the ways in which we then like make our 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 I have a one comment about the giving voice of the voices I really like the point about how voices is seen as mean for agency and self presentation and we're just thinking about if you change a headline to something different instead of giving voices of voices to something like listen to the unlistenable it'll be a totally different right focus on on instead of on the person who who who needs to be given a 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 - there's a phrase I really really love a media just a scholar Tanya Dreier talks about the partial promise of voice so voice is in completion the partiality of it be to fully say that we have any kind of grasp or pin down a below unit of it because that's that understanding of respect of a message being acted on and a promise being kept and that's kind of partly in like larger public sphere discussions but I think that's at that point about listening whether one is able to be listened to or not again that's a begin to think about that in terms of like a biological individual level a social level a political you know what the mechanisms are for feedback and but also some back also reinforced who's in power in the first place and in what ways can that still enforce a and enough them you know a powerless a you know again an essential izing idea of having and not having of giving and not giving hi I have a comment than the 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  and I learned like a day in the life of someone who is disabled you know I was 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 than they would have I would have to work with the north-eastern 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 six of version six of the you know the book for the class and the one they had for the Braille was like Version three you know things like it's a very you know things that we just take for granted it's just very humbling another time I was at an event where there's a company I will not play it up but as -play media they had 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 this in the disability so my question here is you know we're in an area where we have so many startups and just like until recently cybersecurity and writing 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 if it's not an education or government is there anything that can be done to teach like the cs students that are coming on Alcor six at MIT here at Harvard the people who are before they start their careers to incorporate it in the design so it's not yeah yeah for those you know let's take it make it as part of how you learn how to create so you will not have these incredible disparities in you know accessibility once one thing I would say is to read and 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 distilled you're adding like the recovery of individuals with disabilities in computing history or engineering history and is really central I think to that idea of not developing a sort of charity model of disability pedagogy in a field like CES 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 you probably won't and 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 four or 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 an actual training and 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 literature's 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 you know when you look at things like like wearable technologies and there's so much more focus right now in the mainstream and I think this gets back to sort of this convergence point there's so much more focused right now on human machine interactions and artificial intelligence and a lot of the technologies that are necessary to make you know wearables better to make you know augmented reality better to make autonomous vehicles better you know 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 lagging this 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 you know 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 to 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 you know 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 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 there's 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 the policy issues in accessibility have to do with things around their 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 start alive and I don't see as much discussion of that in a lot of the disability discussion 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 is content both the activism around that and then the st 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 you know 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 and then 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 and but I'm encouraged because I see that that's also happening in informal ways and 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 I've been and eight 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 wc very because there's a chapter in the book that's about and 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 that you know a lot of things that were related to issues around taste related to issues of ownership and the idea of whether you had multiple different of those pieces of hardware to delineate and make distinctions between which of those things are for but it for me like the real lightning strike and that was I was at you know doing observation and the speech pathologist I was with like 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 kids in their iPads in their youtubes and enter end 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 praise it as that way around being around English language mobilize resources around community members who had other kinds of access 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 like is a consent like design designs vs consumption technology not necessarily for creation and somewhat for circulation but just thinking about the the people who people wanting to take advantage of like all of these things that can be done but some of the professional push backs around again like sort of expertise and you know it's a mainstream ecology but it entered the home like through the teachings of somebody with a professionalization you know certain sort of things attached to that so more that in the book okay thanks everyone again there are I'll just say there are books for purchase the back of the room and thank you so much for coming out Liz and Merrill and Ryan will be here now a round of applause for her [Applause] you