WEBVTT 00:00:00.680 --> 00:00:03.320 Hi, Everyone. Thank you for being here. 00:00:03.320 --> 00:00:05.720 It's my great pleasure and privilege to introduce today's speakers. 00:00:09.420 --> 00:00:11.580 Liz Ellcessor has been, since 2012, 00:00:11.580 --> 00:00:15.760 an Assistant Professor in the Media School at Indiana University, Bloomington, 00:00:16.200 --> 00:00:18.440 as well as an affiliate faculty member 00:00:18.820 --> 00:00:20.180 in the department of 00:00:20.180 --> 00:00:22.200 of Gender and Women's Studies in the 00:00:22.200 --> 00:00:23.220 Cultural Studies program. 00:00:23.600 --> 00:00:24.160 However 00:00:24.160 --> 00:00:26.620 She will be starting a position in the Department of Media Studies 00:00:26.640 --> 00:00:28.640 at the University of Virginia 00:00:29.180 --> 00:00:30.540 very, very shortly. 00:00:30.680 --> 00:00:32.479 Liz works at the intersection of 00:00:32.479 --> 00:00:34.900 Cultural Studies, Media Studies 00:00:35.220 --> 00:00:36.900 and Disability Studies. 00:00:36.900 --> 00:00:39.540 Her research and teaching interests include 00:00:39.700 --> 00:00:42.660 Media history, access and literacy as well as 00:00:42.660 --> 00:00:45.220 social media, participatory culture, 00:00:45.220 --> 00:00:47.220 celebrity and performance of the self. 00:00:49.260 --> 00:00:55.140 She is the author of "Restricted Access: media, disability and the politics of participation" 00:00:55.280 --> 00:00:56.560 from NYU press, last year, 00:00:56.720 --> 00:00:58.800 and co-editor with Bill Kirkpatrick 00:01:02.160 --> 00:01:04.319 of "Disability Media Studies", 00:01:05.720 --> 00:01:07.800 which is forthcoming from NYU. 00:01:09.260 --> 00:01:10.220 Meryl Alper is 00:01:10.220 --> 00:01:12.620 an Assistant Professor of Communication Studies at 00:01:13.900 --> 00:01:16.280 Northeastern University and a faculty associate here at 00:01:16.280 --> 00:01:17.760 The Berkman Klein Center. 00:01:18.120 --> 00:01:22.280 Prior to joining the faculty at Northeastern 00:01:22.280 --> 00:01:25.400 she earned her Doctorate and Master's degrees 00:01:25.400 --> 00:01:28.660 from the Annenburg School of Communication and Journalism at the University of Southern California. 00:01:28.660 --> 00:01:31.220 Meryl has worked for over a decade in the Children's media industry. 00:01:32.240 --> 00:01:34.700 As an undergraduate at Northwestern she 00:01:34.700 --> 00:01:37.120 she was the lab assistant manager in the NSF-funded 00:01:38.780 --> 00:01:40.300 Children's Digital Media Center/ 00:01:40.840 --> 00:01:42.040 Digital Kids Lab. 00:01:42.040 --> 00:01:44.760 She interned with the education and research 00:01:44.760 --> 00:01:46.100 department at Sesame Workshop 00:01:46.420 --> 00:01:47.220 in New York. 00:01:47.220 --> 00:01:48.960 Maybe you've heard of it. [Laughter from audience]. 00:01:49.760 --> 00:01:51.840 Post graduation, she worked in 00:01:53.920 --> 00:01:56.400 LA as a research manager for Nick Jr. 00:01:56.400 --> 00:01:58.600 conducting formative research for 00:01:58.600 --> 00:02:00.360 the Emmy-nominated educational 00:02:00.360 --> 00:02:01.760 pre-school television series 00:02:02.340 --> 00:02:04.200 Ni Hao, Ki Ian 00:02:04.200 --> 00:02:05.620 and the Fresh Beat Band. 00:02:06.000 --> 00:02:08.800 Meryl is the author of "Digital Youth with Disabilities", 00:02:08.800 --> 00:02:10.820 MIT Press, 2014, 00:02:11.440 --> 00:02:12.720 and "Giving Voice: 00:02:14.200 --> 00:02:16.860 mobile communication, disability and inequality", 00:02:16.980 --> 00:02:18.420 MIT Press, this year. 00:02:19.700 --> 00:02:22.060 You may have also seen her writing in The Guardian, The Atlantic 00:02:22.820 --> 00:02:24.420 Motherboard and Wired. 00:02:24.920 --> 00:02:26.520 Ryan Boudish is a Senior Researcher 00:02:26.520 --> 00:02:28.840 at the Berkman Klein Center. 00:02:29.080 --> 00:02:32.040 Ryan joined the Berkman Klein Center in 2011 00:02:32.040 --> 00:02:34.500 as a Fellow and the Project Director of 00:02:35.320 --> 00:02:36.860 Herdict. 00:02:38.480 --> 00:02:40.540 In his time here Ryan has contributed policy and legal analysis 00:02:40.540 --> 00:02:42.160 to a number of projects and 00:02:42.180 --> 00:02:43.540 reports and he's led 00:02:43.540 --> 00:02:45.320 several significant initiatives related to 00:02:45.320 --> 00:02:47.480 internet censorship, corporate transparency about 00:02:48.280 --> 00:02:50.660 government surveillance and multi 00:02:50.660 --> 00:02:52.600 stakeholder governance mechanism 00:02:52.800 --> 00:02:55.760 I should also say that Meryl and Liz have each 00:02:55.760 --> 00:02:58.140 published outstanding books in the past year. 00:02:58.880 --> 00:03:02.000 They're in the center of my field, at least, and 00:03:02.120 --> 00:03:04.360 while "Giving Voice" by Meryl and 00:03:04.360 --> 00:03:06.480 "Restricted Access" by Liz 00:03:06.800 --> 00:03:10.320 offer rigorous analyses of lives lived with disabilities 00:03:10.780 --> 00:03:12.060 in the 21st century 00:03:12.060 --> 00:03:15.400 they're also offering very fundamental reconsiderations 00:03:15.400 --> 00:03:16.700 of what it means to study 00:03:17.000 --> 00:03:19.720 media and communication and technology 00:03:19.820 --> 00:03:22.300 and both books are totally worth your time 00:03:22.760 --> 00:03:25.000 and it's a great privilege to have 00:03:25.080 --> 00:03:26.360 you all here today. 00:03:27.040 --> 00:03:29.040 So, I'm going to hand it over to 00:03:30.500 --> 00:03:33.260 Meryl and we'll start today's event. 00:03:46.000 --> 00:03:46.640 Awesome. 00:03:46.980 --> 00:03:50.580 So Liz and I, we're playing off one another a little bit in 00:03:50.800 --> 00:03:52.880 the sense that each of our books 00:03:53.740 --> 00:03:55.500 focuses particularly on a 00:03:55.680 --> 00:03:57.520 key term. Mine, "voice" and 00:03:57.540 --> 00:03:58.980 Liz's, "Access", and 00:03:59.980 --> 00:04:02.940 As you might have read in the introduction to 00:04:02.980 --> 00:04:04.820 this event on the event site 00:04:05.520 --> 00:04:08.640 "Can we talk?", we think, is a really evocative question. 00:04:08.640 --> 00:04:11.800 We'll pull in threads from each of our discussions 00:04:13.980 --> 00:04:16.300 It pulls upon ability, collective 00:04:16.300 --> 00:04:18.200 notions and actions of what it means to participate 00:04:20.140 --> 00:04:22.380 So my presentation is Can We Talk? 00:04:22.980 --> 00:04:23.860 About Voice. 00:04:26.980 --> 00:04:27.780 So in my work 00:04:27.780 --> 00:04:30.000 just to pull together what Dylan so graciously 00:04:30.000 --> 00:04:32.020 said. I study the social implications 00:04:32.020 --> 00:04:34.580 of communication technology with a focus on 00:04:34.740 --> 00:04:37.140 the role of digital and mobile media 00:04:37.260 --> 00:04:39.100 in the lives of young people 00:04:39.100 --> 00:04:41.560 but particularly in the lives of young people with developmental 00:04:41.560 --> 00:04:42.200 disabilities. 00:04:42.860 --> 00:04:44.460 So that's in particular 00:04:45.480 --> 00:04:46.760 autistic youth and 00:04:46.760 --> 00:04:49.240 young people with significant communication 00:04:49.540 --> 00:04:50.420 impairments 00:04:50.680 --> 00:04:53.560 particularly related to something called 00:04:53.560 --> 00:04:55.040 childhood apraxia of speech, which is basically 00:04:55.040 --> 00:04:58.040 when the brain has difficulty coordinating the 00:04:58.040 --> 00:04:59.180 the body parts that are needed. 00:04:59.860 --> 00:05:00.420 to talk. 00:05:00.420 --> 00:05:02.840 So I think about communication across different 00:05:03.360 --> 00:05:03.860 levels 00:05:04.880 --> 00:05:08.960 So some of these young people, instead of talking in ways that 00:05:08.960 --> 00:05:10.780 you might think of in the traditional sense 00:05:12.240 --> 00:05:15.040 use some thing like what Stephen Hawkings 00:05:18.260 --> 00:05:19.460 uses, but instead 00:05:20.960 --> 00:05:22.960 nowadays instead of having to 00:05:22.960 --> 00:05:26.340 necessarily use a device that is bigger, more expensive 00:05:26.940 --> 00:05:29.580 breaks, and takes a long time to replace 00:05:29.580 --> 00:05:33.420 you could potentially use what I have pictured on the bottom here 00:05:34.560 --> 00:05:36.800 is an iPad with this one app called 00:05:37.320 --> 00:05:38.520 Proloquo2Go and 00:05:42.060 --> 00:05:43.340 you can select text 00:05:43.340 --> 00:05:46.080 and icons and it will fill in this top white 00:05:46.500 --> 00:05:48.580 bar and you can press the bar and 00:05:48.940 --> 00:05:50.460 speech will be output. 00:05:50.460 --> 00:05:54.060 The language, the software is a little less sophisticated 00:05:54.180 --> 00:05:55.940 than what can be created in 00:05:55.940 --> 00:05:57.580 a bigger computer than that but 00:05:58.440 --> 00:05:59.880 it can do a lot of work. 00:06:00.400 --> 00:06:04.000 So with those unfamiliar, some of these technologies 00:06:04.000 --> 00:06:07.240 sometimes they're called voice output communication aids, 00:06:08.060 --> 00:06:09.900 speech generating devices, 00:06:09.960 --> 00:06:13.640 or augmentative and alternative communication devices. 00:06:13.640 --> 00:06:15.600 Which is ironically a mouthful to say. 00:06:16.240 --> 00:06:18.720 So I'm just going to say AAC for short. 00:06:22.440 --> 00:06:25.320 So because the users of these technologies 00:06:25.320 --> 00:06:27.480 don't talk in the traditional sense 00:06:27.480 --> 00:06:30.380 and because they use speech generating devices to communicate 00:06:31.340 --> 00:06:35.020 the popular press has historically referred to 00:06:35.020 --> 00:06:37.340 these types of technologies in a way 00:06:37.340 --> 00:06:39.180 in which the users of them get 00:06:39.600 --> 00:06:41.120 figured as voiceless. 00:06:42.960 --> 00:06:44.560 So the top headline says 00:06:44.680 --> 00:06:46.200 it's from the LA Times 00:06:46.200 --> 00:06:48.800 It says Electronic Help for the Handicapped 00:06:48.800 --> 00:06:51.000 The Voiceless Break Their Silence. 00:06:51.000 --> 00:06:54.620 That's a headline about a technology called the Canon Communicator. 00:06:55.060 --> 00:06:57.780 So Canon the company you might think of as cameras 00:06:57.780 --> 00:06:59.280 produced a device that was 00:06:59.980 --> 00:07:01.660 specifically focused on 00:07:01.660 --> 00:07:02.660 voice and voice output. 00:07:05.080 --> 00:07:07.880 Or, sorry, electronic voice generation. 00:07:10.420 --> 00:07:12.580 2012, pretty similar headline. 00:07:12.920 --> 00:07:16.600 This is about the iPad giving voice to kids with autism. 00:07:17.180 --> 00:07:20.140 But the question I'm really interested in is 00:07:20.140 --> 00:07:22.880 What does it mean for technology to give voice 00:07:22.880 --> 00:07:23.860 to the voiceless? 00:07:23.860 --> 00:07:27.520 And who does that phrase actually help or hurt in the process. 00:07:27.520 --> 00:07:31.140 So to answer that question I'm going to discuss three things. 00:07:31.140 --> 00:07:34.460 I'm going to talk first about the broader significance of this phrase 00:07:34.460 --> 00:07:36.120 "Giving voice to the voiceless" 00:07:36.120 --> 00:07:40.500 It's a phrase you might have heard but not necessarily taken a critical angle towards 00:07:41.300 --> 00:07:44.460 Why it's an important concept to critique, especially 00:07:44.460 --> 00:07:45.640 for people with disabilities. 00:07:45.720 --> 00:07:49.240 And third, how thinking differently about voice and 00:07:49.240 --> 00:07:51.360 voicelessness in this way, I think, can 00:07:51.360 --> 00:07:53.080 more broadly create meaningful change 00:07:53.080 --> 00:07:55.780 around technology and ethical considerations 00:07:55.780 --> 00:07:56.580 more broadly. 00:07:58.520 --> 00:08:00.040 Speaking of ethics... 00:08:01.060 --> 00:08:02.900 So before I go much further I 00:08:02.900 --> 00:08:04.300 also want to make clear that 00:08:04.300 --> 00:08:07.540 I do not personally identify as having a disability. 00:08:08.520 --> 00:08:10.600 I am also a white, cis, straight 00:08:10.600 --> 00:08:12.040 upper-middle class woman. 00:08:12.040 --> 00:08:15.020 So I'm sensitive to the power inherent in interpreting and 00:08:15.020 --> 00:08:16.420 sharing the experiences of others 00:08:16.420 --> 00:08:17.560 through my analytic lens. 00:08:18.460 --> 00:08:22.120 But I also believe that disability is at the heart of the human experience. 00:08:23.040 --> 00:08:25.600 I think this picture here gets at that. 00:08:25.640 --> 00:08:27.880 So it's a picture taken by Tom Olin 00:08:28.460 --> 00:08:29.580 at an ADA march in the early 90s. 00:08:32.400 --> 00:08:34.480 People of various racial backgrounds, 00:08:35.600 --> 00:08:37.840 people with various physical 00:08:37.840 --> 00:08:39.500 and what not disabilities marching under a banner 00:08:41.120 --> 00:08:45.680 of Martin Luther King Jr.'s quote, "Injustice anywhere is a threat to justice everywhere," 00:08:45.680 --> 00:08:50.340 So I think that something that is really brought out in this picture 00:08:50.340 --> 00:08:53.200 is that despite structures that systematically 00:08:53.220 --> 00:08:56.580 isolate and remove people with disabilities from 00:08:56.580 --> 00:08:58.980 the center of society, we have to think about 00:08:58.980 --> 00:09:02.240 the ways in which how we define the ways it means to be human 00:09:02.240 --> 00:09:04.460 and then even within that I would say 00:09:04.460 --> 00:09:08.120 because there is the MLK quote here, about the intersections of disability with 00:09:08.120 --> 00:09:11.000 other kinds of identities and other potentialities for marginalization as well. 00:09:13.960 --> 00:09:15.320 With that being said 00:09:15.320 --> 00:09:18.320 What does it mean to give voice to the voiceless? 00:09:18.460 --> 00:09:20.380 What does "giving voice" mean? 00:09:22.000 --> 00:09:24.640 We might locate its origins biblically. 00:09:27.260 --> 00:09:29.500 In the New International version 00:09:29.500 --> 00:09:32.940 Proverbs 31:8 says, Speak up for those who cannot speak for themselves 00:09:34.260 --> 00:09:36.900 for the rights of all who are destitute. 00:09:37.080 --> 00:09:41.080 So not only do you get allusions about voice and speaking but 00:09:41.080 --> 00:09:42.560 also a class dimension to this as well. 00:09:44.340 --> 00:09:48.900 We might locate, in terms of how this is trace through different 00:09:48.900 --> 00:09:49.900 professional groups, different 00:09:50.340 --> 00:09:52.180 actors in the public sphere 00:09:52.320 --> 00:09:53.760 journalists. So this 00:09:53.760 --> 00:09:57.580 a screenshot of the Society of Professional Journalists 00:09:57.900 --> 00:09:59.340 their Code of Ethics. 00:09:59.340 --> 00:10:01.940 And one line of this is that journalists 00:10:01.940 --> 00:10:04.260 a key journalistic duty is to be vigilant 00:10:04.260 --> 00:10:07.540 and courageous about holding those with power accountable. 00:10:07.860 --> 00:10:09.780 Give voice to the voiceless. 00:10:10.620 --> 00:10:13.500 Moving from just sort of actors to also thinking about 00:10:14.640 --> 00:10:16.560 other kinds of technologies 00:10:17.460 --> 00:10:20.420 we can think about an endless list of things. 00:10:20.420 --> 00:10:22.260 whether it's civic media, Twitter 00:10:22.260 --> 00:10:25.760 or Open Data, as pictured here, as sort of giving voice. 00:10:26.100 --> 00:10:29.460 This is from the Open Data Institute Summit, 2015. 00:10:29.460 --> 00:10:34.620 The speaker's talk is "Citizen empowerment: giving a voice to the voiceless" 00:10:36.720 --> 00:10:40.160 All too often, though, we consider this background 00:10:41.200 --> 00:10:43.520 disability becomes instrumental 00:10:45.200 --> 00:10:47.280 for another purpose outside of 00:10:47.280 --> 00:10:48.560 just disability focused issues. 00:10:48.840 --> 00:10:51.720 It tends to represent something broken for 00:10:51.740 --> 00:10:53.260 technology to repair. 00:10:53.260 --> 00:10:56.680 So consider, this is Microsoft's Super Bowl commercial 00:10:57.380 --> 00:10:58.020 from 2014 00:10:58.820 --> 00:11:00.580 So long after Apple had its 00:11:00.580 --> 00:11:02.300 big Super Bowl commercial in the 80s 00:11:02.300 --> 00:11:05.680 it took until 2014 for Microsoft to have its entry point 00:11:05.680 --> 00:11:07.520 and disability is front and center here. 00:11:07.620 --> 00:11:10.660 It features NFL player Steve Gleeson who lost 00:11:10.660 --> 00:11:12.740 the ability to produce oral speech due to 00:11:13.340 --> 00:11:15.260 ALS and the ad proclaims that 00:11:15.260 --> 00:11:18.340 the Microsoft Surface Pro, which is pictured here, has 00:11:18.340 --> 00:11:20.000 given voice to the voiceless. 00:11:20.000 --> 00:11:22.940 And this gets exemplified by Gleeson himself 00:11:22.940 --> 00:11:25.200 providing the voiceover for the commercial. 00:11:26.340 --> 00:11:31.620 So we can say, and I don't have the time to play the commercial, but encourage you 00:11:31.720 --> 00:11:33.000 to take a look at it, 00:11:33.540 --> 00:11:34.660 in its entirety, 00:11:34.660 --> 00:11:37.540 but we can say then that giving voice to the voiceless means 00:11:37.540 --> 00:11:38.820 a couple of things. It means 00:11:39.660 --> 00:11:41.980 that voice is used as a metaphor for 00:11:41.980 --> 00:11:43.380 for agency and self-representation 00:11:44.360 --> 00:11:45.880 That voicelessness is 00:11:46.040 --> 00:11:49.000 is imagined as a stable and natural category 00:11:49.320 --> 00:11:52.360 so THE voiceless is a thing that we can locate. 00:11:52.380 --> 00:11:54.540 and as a sort of immutable thing. 00:11:54.680 --> 00:12:00.280 And technology is figured as a direct opportunity, this frictionless opportunity 00:12:01.660 --> 00:12:02.780 for expression. 00:12:05.020 --> 00:12:07.740 So there is a lot to critique about each of 00:12:08.780 --> 00:12:10.220 those kinds of claims 00:12:10.320 --> 00:12:14.000 But why do I think it's particularly important to do so? 00:12:14.220 --> 00:12:16.700 Particularly at this moment in time. 00:12:18.700 --> 00:12:22.220 That's because, based on the ethnographic research 00:12:22.220 --> 00:12:24.380 that I conducted, despite these widespread claims 00:12:24.380 --> 00:12:26.540 to "give voice to the voiceless" 00:12:26.540 --> 00:12:29.400 communication technologies that are intended to 00:12:29.400 --> 00:12:32.280 universally empower are still subject to disempowering 00:12:32.400 --> 00:12:34.240 structural inequalities, 00:12:34.240 --> 00:12:36.980 and especially for people with disabilities. 00:12:38.760 --> 00:12:40.600 So in my book "Giving Voice" 00:12:43.640 --> 00:12:46.640 I argue that efforts to better include disabled individuals 00:12:46.640 --> 00:12:48.920 within society through primarily 00:12:48.920 --> 00:12:50.420 technological interventions 00:12:50.420 --> 00:12:53.500 when all we do is fetishize and focus on the technology, 00:12:53.680 --> 00:12:57.200 for whatever kind of commercial or affective reasons, 00:12:57.660 --> 00:13:02.140 we miss the opportunity to take into account all the other ways 00:13:02.360 --> 00:13:04.360 in which culture, law, policy 00:13:04.360 --> 00:13:06.320 and even the design of these technologies themselves 00:13:07.140 --> 00:13:09.140 can marginalize and exclude. 00:13:09.140 --> 00:13:13.320 So the book is based on a 16 month ethnographic study that I conducted 00:13:14.900 --> 00:13:17.220 of young people who use the iPad and 00:13:17.220 --> 00:13:18.980 that Proloquo2Go app. Kids about 3 to 13. 00:13:20.980 --> 00:13:24.900 I spent some time observing them getting trained how to use 00:13:24.900 --> 00:13:26.980 the technologies at home with speech pathologists 00:13:26.980 --> 00:13:30.420 I followed them to different user groups that young people 00:13:30.420 --> 00:13:32.180 would use to talk to one another 00:13:32.180 --> 00:13:35.040 I went to parent conferences. I also started 00:13:35.040 --> 00:13:38.060 to interview different kinds of assistive technology 00:13:38.060 --> 00:13:41.340 administrators that were in the local Southern California area 00:13:41.580 --> 00:13:43.900 and lots of variations across 00:13:43.900 --> 00:13:46.280 better, more resourced and less resourced school districts 00:13:46.560 --> 00:13:48.160 larger, and small ones, 00:13:48.160 --> 00:13:52.220 to get a sense of what were the other kinds of systems that were shaping the 00:13:52.580 --> 00:13:54.660 adoption, use, or potentially 00:13:54.660 --> 00:13:57.040 the non-use of these technologies. 00:13:58.260 --> 00:14:02.020 So in terms of culture, I'm just going to go through three 00:14:02.020 --> 00:14:03.220 examples quickly. 00:14:04.240 --> 00:14:07.440 Most speech generating devices are in English. 00:14:08.200 --> 00:14:11.160 The ones that are given to kids in US schools. 00:14:11.440 --> 00:14:15.360 At home, that is not something that everyone uses to speak. 00:14:15.580 --> 00:14:18.620 You automatically can create a disconnect there 00:14:19.420 --> 00:14:22.140 between what a home culture is and what a school culture is. 00:14:23.340 --> 00:14:26.320 So one specialist I talked to said "There are hundreds of languages 00:14:26.320 --> 00:14:28.040 in these schools. One of the kids 00:14:28.040 --> 00:14:30.720 I work with, at home, his parents speak Korean. 00:14:31.840 --> 00:14:34.800 Any kind of assistive communication system 00:14:34.800 --> 00:14:37.120 They wouldn't use it because they don't speak it. 00:14:37.120 --> 00:14:39.900 It's a big issue. We are stuck just doing school-based 00:14:39.900 --> 00:14:41.740 which is find, that's our job, but 00:14:41.740 --> 00:14:43.400 it's hard. It's hard to support them acorss 00:14:43.560 --> 00:14:45.400 the board because we can't. 00:14:45.760 --> 00:14:48.720 So we could say that here voice is given but then 00:14:48.720 --> 00:14:50.780 it's also simultaneously muted. 00:14:53.420 --> 00:14:54.700 With respect to law 00:14:54.900 --> 00:14:57.540 Assistive technologies are also quite 00:14:57.780 --> 00:14:59.460 bluntly, borne of a world 00:14:59.460 --> 00:15:02.380 in which half of the people who die at the hands 00:15:03.000 --> 00:15:04.920 of police have a disability. 00:15:04.920 --> 00:15:08.380 There's a 2016 report from the Ruderman Family Foundation if you want to 00:15:08.580 --> 00:15:09.940 take a greater look at that. 00:15:09.940 --> 00:15:12.660 But this is something that Danny's dad Peter tapped into 00:15:13.180 --> 00:15:16.380 when he talked about a fear that a police officer 00:15:16.380 --> 00:15:19.020 might mistake his son reaching for his communication 00:15:19.020 --> 00:15:21.180 device as reaching for a weapon. 00:15:21.180 --> 00:15:23.960 So he said, "I need him to be able to gesture 'yes' 00:15:23.960 --> 00:15:25.540 and 'no'. If a cop's asking 00:15:25.540 --> 00:15:28.480 him questions and has got a gun on him, no cop in the world 00:15:28.520 --> 00:15:30.040 is going to allow him to 00:15:30.280 --> 00:15:31.900 grab a talker." 00:15:32.660 --> 00:15:34.900 So this awareness of the limits of 00:15:34.900 --> 00:15:36.820 any given piece of technology 00:15:36.820 --> 00:15:39.700 in a particular context around justice and injustice 00:15:40.560 --> 00:15:44.240 was something that participants were keenly aware of. 00:15:44.240 --> 00:15:47.200 That is not necessarily something that is reflected in this broader discourse. 00:15:47.200 --> 00:15:50.660 So giving voice can also run the risk of being silenced. 00:15:50.660 --> 00:15:52.780 Quite literally, permanently. 00:15:54.760 --> 00:15:57.400 Lastly, all of this has to be understood 00:15:57.400 --> 00:15:58.980 in a larger policy backdrop 00:15:58.980 --> 00:16:02.780 So school district policies, what I found, tend to promote 00:16:02.780 --> 00:16:05.680 there financial investments protecting those 00:16:05.680 --> 00:16:08.500 more so than promoting students' continued growth. 00:16:08.760 --> 00:16:12.360 This is something that Moira's mom Vanessa related to 00:16:12.360 --> 00:16:14.920 in her story. So, in Southern California, kids 00:16:15.640 --> 00:16:18.200 had been throwing the iPads into pools 00:16:18.200 --> 00:16:21.240 this is what the mom was told and because of that the school 00:16:21.240 --> 00:16:24.160 decided that they were not going to allow the kids to take 00:16:24.160 --> 00:16:26.500 those iPads off campus, even though 00:16:26.500 --> 00:16:29.060 they were federally mandated to provide the child 00:16:29.480 --> 00:16:31.720 a way in which to communicate with others. 00:16:32.440 --> 00:16:35.000 So we're bounding that within the school. 00:16:35.460 --> 00:16:37.700 And the ability to challenge that 00:16:37.700 --> 00:16:41.000 is completely shaped by one's access to other kinds of 00:16:41.000 --> 00:16:43.460 resources: financial aid, legal assistance, 00:16:43.460 --> 00:16:44.600 and social capital. 00:16:45.020 --> 00:16:47.900 So Vanessa said to me, "The school district 00:16:47.900 --> 00:16:50.500 changed their policy and said that iPads only remained 00:16:50.500 --> 00:16:52.340 on campus, which was in voilation of 00:16:52.340 --> 00:16:54.140 Moira's IEP. I wrote them and 00:16:54.920 --> 00:16:56.760 said, 'This is in violation 00:16:56.760 --> 00:16:58.700 I'm asking that you give me a window of opportunity 00:16:59.140 --> 00:17:01.540 to purchase her a device for the home 00:17:02.700 --> 00:17:04.140 One morning I was like 00:17:04.140 --> 00:17:07.420 'I don't want to send this iPad to school.' I of course gave it to her 00:17:07.420 --> 00:17:09.000 and it didn't come home." 00:17:10.160 --> 00:17:13.200 So we could say here also, yes, voice is given, 00:17:13.319 --> 00:17:14.999 but then it's taken away. 00:17:19.920 --> 00:17:22.880 So how does one particular kind of case get at 00:17:22.880 --> 00:17:26.300 some of these larger frameworks with which we understand 00:17:26.300 --> 00:17:27.599 technology and ethics. 00:17:28.040 --> 00:17:31.000 So my overall takeaway is that we should keep 00:17:31.000 --> 00:17:32.560 voices attached to people. 00:17:33.160 --> 00:17:36.520 So I'm drawing here on an historian, Katherine Oft, 00:17:36.820 --> 00:17:38.500 who's at the Smithsonian 00:17:38.500 --> 00:17:42.760 She's written an introduction to this book, this is a picture of the cover, 00:17:42.760 --> 00:17:45.780 It's called "Artificial Parts, Practical Lives 00:17:45.780 --> 00:17:47.640 Modern Histories of Prosthetics" 00:17:47.640 --> 00:17:49.240 and she writes, "Focus on the materiality 00:17:49.240 --> 00:17:51.620 of the body, not only or exclusively 00:17:51.820 --> 00:17:54.460 its abstract and metaphoric meanings. 00:17:54.460 --> 00:17:58.220 Keeping protheses attached to people limits the kinds of 00:17:58.220 --> 00:18:01.060 claims and interpretive leaps a writer can make." 00:18:02.900 --> 00:18:06.180 So I think, as well, staying very close to the body 00:18:06.180 --> 00:18:09.140 staying very close to the material and embodied aspects of 00:18:09.140 --> 00:18:11.560 voice is the only way for us to understand 00:18:12.280 --> 00:18:14.120 the uses and abuses of voice 00:18:14.120 --> 00:18:16.420 in relation to other kinds of inequalities and injustices. 00:18:18.060 --> 00:18:21.100 I will just go through two applications of this 00:18:21.780 --> 00:18:23.220 in terms of what I 00:18:23.220 --> 00:18:26.180 use with my students to talk about politics in two ways. 00:18:26.180 --> 00:18:29.460 Politics in sort of 'Big P Politics', so electoral politics 00:18:29.460 --> 00:18:31.340 And 'little p politics' 00:18:31.860 --> 00:18:34.980 which is power and its various manifestations. 00:18:34.980 --> 00:18:37.320 And those two things are related to one another but its a simple 00:18:37.320 --> 00:18:38.620 way to kind of split it up. 00:18:38.620 --> 00:18:41.960 Trigger warning, there is a picture of Donald Trump 00:18:41.960 --> 00:18:44.380 on the next slide. I'm just letting you know. [Audience laughs]. 00:18:45.740 --> 00:18:50.060 So with Big P Politics we need to keep voices attached to citizens 00:18:50.200 --> 00:18:52.840 in our democracy. Despite Donald Trump's 00:18:53.060 --> 00:18:56.660 demagogic insistence that he is literally our voice. 00:18:58.040 --> 00:19:00.520 This is New York Times, July 22, 2016. 00:19:01.260 --> 00:19:03.420 Front page of newyorktimes.com 00:19:03.960 --> 00:19:07.080 This is right after Trump's acceptance speech 00:19:08.740 --> 00:19:09.700 at the INC Convention 00:19:11.380 --> 00:19:16.620 "Trump Pledges..." Headline, it's a picture of Trump smiling and a very large close up version of him 00:19:18.120 --> 00:19:19.960 smiling in the background projected on the screen, and it says 00:19:20.780 --> 00:19:23.900 "Trump Pledges Order and Says: I Am Your Voice" 00:19:24.520 --> 00:19:29.640 Let's think about that in relation to ways in which people with disabilities 00:19:30.400 --> 00:19:33.280 potentially have some quibbles with that. 00:19:34.100 --> 00:19:37.300 So this is a screenshot from CNN's projection of 00:19:38.920 --> 00:19:43.140 at the DNC, a disabled self-advocate 00:19:43.340 --> 00:19:44.840 Anastasia Somoza 00:19:44.840 --> 00:19:47.000 directly responding to Trump's call saying Donald Trump 00:19:48.060 --> 00:19:49.100 doesn't hear me 00:19:49.100 --> 00:19:52.240 he doesn't see me and he definitely doesn't speak for me. 00:19:52.240 --> 00:19:54.660 So this pulling through of ways in which voice 00:19:54.660 --> 00:19:57.140 is getting used and abused in particular ways 00:19:57.140 --> 00:20:00.740 it is not something that people with disabilities are... 00:20:01.140 --> 00:20:03.700 They are the ones that we need to look to 00:20:03.920 --> 00:20:06.880 and draw upon sort of histories of resources 00:20:06.920 --> 00:20:08.520 in which to grapple with 00:20:08.700 --> 00:20:10.620 the uses of language 00:20:10.620 --> 00:20:13.520 in ways that more often exclude than include. 00:20:14.680 --> 00:20:16.440 On a technological aspect 00:20:16.440 --> 00:20:20.880 nowadays there's a lot of interest in voice activated technologies 00:20:21.420 --> 00:20:23.660 so Siri and Alexa 00:20:24.020 --> 00:20:26.720 and in some ways those can be really accessible. 00:20:26.720 --> 00:20:29.560 Those can add, if you have motor limitations, other ways 00:20:29.760 --> 00:20:31.180 to access. 00:20:31.180 --> 00:20:34.600 But we have to think about what kinds of voices get picked up 00:20:35.020 --> 00:20:37.160 This is just a headline that says "Voice is the next big platform..." 00:20:37.160 --> 00:20:41.220 But then here's another headline from Scientific american, "Why Siri won't listen 00:20:41.220 --> 00:20:44.000 to millions of people with disaiblities. 00:20:44.000 --> 00:20:47.180 There are particular ways in which voices are recognized or are not recognized. 00:20:47.880 --> 00:20:51.480 Let alone just the kinds of voices that can be produced 00:20:51.480 --> 00:20:53.240 by a given piece of technology 00:20:55.380 --> 00:20:57.380 So ideas about the normal here 00:20:57.380 --> 00:20:58.880 and what it means to have a voice 00:21:00.000 --> 00:21:02.320 or more critical considerations. 00:21:03.400 --> 00:21:05.560 So to wrap up, technologies that 00:21:05.560 --> 00:21:07.100 give a voice to the voiceless 00:21:07.100 --> 00:21:09.360 can also reproduce structural inequalities 00:21:11.180 --> 00:21:13.180 Having a voice and being heard 00:21:13.180 --> 00:21:14.320 are not necessarily the same things at all. 00:21:14.320 --> 00:21:16.540 And they're also not just about technology. 00:21:16.540 --> 00:21:19.260 But also about social, cultural and economic resources. 00:21:19.260 --> 00:21:22.460 And having access to which is unevenly distributed. 00:21:23.520 --> 00:21:27.120 My book centers the iPad but it's interesting because 00:21:27.120 --> 00:21:30.580 I am really interested in what some people might call 00:21:30.880 --> 00:21:31.840 an edge case or 00:21:31.840 --> 00:21:33.560 you know, a sort of outside case, but 00:21:33.560 --> 00:21:37.060 I really believe there's something to think about marginalization and 00:21:37.800 --> 00:21:39.160 participation that 00:21:39.520 --> 00:21:41.920 is really actually super central to 00:21:41.920 --> 00:21:43.480 to what we're all trying to get at. 00:21:43.480 --> 00:21:46.980 in terms of understanding what it means to participate. 00:21:48.000 --> 00:21:50.620 So we need to keep voices materially attached to people 00:21:50.820 --> 00:21:53.300 in how we build our technology or else 00:21:54.400 --> 00:21:56.080 the risk is tantamount to dismantling... 00:21:58.100 --> 00:22:00.620 Or if we can say the structure of democracy has been 00:22:00.620 --> 00:22:01.720 stable to begin with... 00:22:01.720 --> 00:22:03.160 Also an open question. 00:22:03.160 --> 00:22:05.820 But at stake is not only which voices get to 00:22:05.820 --> 00:22:08.160 speak but who's thought to have a voice to speak with 00:22:08.160 --> 00:22:09.260 in the first place. 00:22:09.260 --> 00:22:12.460 And that's my talk. [Applause from the audience]. 00:23:01.960 --> 00:23:05.080 Alright, so thank you for having me here today. 00:23:06.600 --> 00:23:09.800 I am happy to have a chance to talk about this work 00:23:09.800 --> 00:23:12.260 in conjunction with Meryl's work, because we've been 00:23:12.460 --> 00:23:14.940 batting around some of the same ideas 00:23:16.120 --> 00:23:18.920 regarding access, voice, participation 00:23:20.020 --> 00:23:22.180 and technology and disability. 00:23:22.360 --> 00:23:27.780 I've been framing my work as, essentially, cultural studies of technology. 00:23:28.260 --> 00:23:31.300 I'm attempting to understand how technologies 00:23:31.300 --> 00:23:33.700 reflect and reproduce particular dynamics of 00:23:34.900 --> 00:23:37.140 power and how users of technologies 00:23:37.820 --> 00:23:40.540 can push back upon those constructions. 00:23:43.040 --> 00:23:45.760 and challenge these sort of received ways in which 00:23:46.600 --> 00:23:50.440 technologies are developed along certain assumptions. 00:23:50.440 --> 00:23:55.620 I'm going to be reading from my phone because I get lost on a large piece of paper. 00:23:57.340 --> 00:24:01.820 To start off here we have some images reflecting a sort of pervasive 00:24:02.900 --> 00:24:05.780 utopianism in talking about the internet, 00:24:05.780 --> 00:24:07.420 World Wide Web, and related technologies. 00:24:08.720 --> 00:24:12.640 At the top right is an image from MCI's "Anthem Commercial" 00:24:12.640 --> 00:24:15.980 This young person appears speaking in American Sign Language 00:24:15.980 --> 00:24:19.020 right before text that reads "there are no infirmities." 00:24:21.180 --> 00:24:23.900 The TIME 2006 "Person of the Year" was You 00:24:24.040 --> 00:24:25.960 with a big reflective cover. 00:24:25.960 --> 00:24:29.500 And then this bottom photo is a screenshot from a Yahoo! 00:24:29.560 --> 00:24:32.440 advertisement from 2009 called "It's You" 00:24:32.440 --> 00:24:37.080 prioritizing this kind of individual empowerment and excitement around 00:24:37.580 --> 00:24:38.860 new technologies. 00:24:38.860 --> 00:24:42.120 At various points these technologies have been understood as 00:24:42.760 --> 00:24:46.120 democratizing, globalizing, something that can 00:24:46.120 --> 00:24:48.680 eradicate racial, gender and disability difference 00:24:48.680 --> 00:24:52.680 and something that can open economic and social opportunities. 00:24:53.200 --> 00:24:57.040 From the hype of cyberspace to the celebrations of Web 2.0 00:24:57.040 --> 00:25:00.620 we see that stories of technology are often stories of 00:25:00.820 --> 00:25:02.340 endless possibility. 00:25:02.340 --> 00:25:07.540 In "Restricted Access" I am attempting to intervene in some of these celebrations. 00:25:07.540 --> 00:25:10.320 by investigating digital media accessibility 00:25:10.320 --> 00:25:13.580 the processes by which digital media is made useable 00:25:13.580 --> 00:25:15.020 by people with disabilities 00:25:15.380 --> 00:25:18.740 and arguing for the necessity of conceptualizing 00:25:20.700 --> 00:25:22.780 access in a way that will be more 00:25:23.680 --> 00:25:26.560 variable, and open opportunity in new ways. 00:25:27.380 --> 00:25:32.100 So after all, I argue if digital media only open up these opportunities 00:25:32.180 --> 00:25:35.460 to people who are already relatively privileged 00:25:35.460 --> 00:25:38.120 in terms of their ability to access technology 00:25:38.120 --> 00:25:41.160 then their progressive potential remains unrealized. 00:25:42.020 --> 00:25:46.260 If not transformed into a means of upholding those varying inequalities. 00:25:49.040 --> 00:25:52.640 Now what is media accessibility, web accessibility? 00:25:53.060 --> 00:25:56.580 This is something I often illustrate with this slide 00:25:56.580 --> 00:26:00.240 which is just a screen shot of the homepage of The New York Times 00:26:01.260 --> 00:26:04.380 as run through the Web Accessibility and Minds 00:26:04.920 --> 00:26:07.080 Online Accessibility Checker. 00:26:07.080 --> 00:26:10.780 This is an automatic software tool that will check the HTML 00:26:10.820 --> 00:26:12.980 and associated code of a web page 00:26:13.700 --> 00:26:16.340 and flag with little red or yellow icons 00:26:16.340 --> 00:26:18.260 where there might be a problem. 00:26:21.220 --> 00:26:24.100 So in this case the page is being flagged for 00:26:24.100 --> 00:26:26.260 not describing the image that reads "New York Times" 00:26:26.980 --> 00:26:29.380 for not describing the small images 00:26:31.120 --> 00:26:33.920 and for having some incorrect form usage. 00:26:36.160 --> 00:26:39.520 Now, accessibility is a fascinating case because 00:26:42.160 --> 00:26:44.160 it is a very granular process. 00:26:45.240 --> 00:26:48.760 Essentially web content accessibility comes out of 00:26:49.100 --> 00:26:51.420 non-governmental policy sources 00:26:51.420 --> 00:26:53.160 such as the World Wide Web Consortium 00:26:53.820 --> 00:26:57.180 It has also been taken up in various legal contexts 00:26:57.180 --> 00:27:00.820 so there are laws in the United States that require accessibility in some contexts 00:27:00.860 --> 00:27:05.340 and there are arguments that the ADA requires web accessibility in 00:27:06.000 --> 00:27:07.040 many contexts. 00:27:09.000 --> 00:27:12.600 However, these policies are written in such a way that 00:27:13.360 --> 00:27:16.400 to facilitate the use of consumer technology 00:27:16.420 --> 00:27:21.960 with the kinds of adaptive and assistive technologies that Meryl gestured towards. 00:27:22.540 --> 00:27:26.480 Things like screen readers, alternative input devices like 00:27:26.800 --> 00:27:28.640 tongue typers, joysticks, 00:27:28.800 --> 00:27:31.040 these technologies are often key 00:27:31.040 --> 00:27:33.920 in allowing people with disabilities to use technology 00:27:33.920 --> 00:27:38.740 and accessibility ensures that software will work with those technologies. 00:27:39.660 --> 00:27:43.660 However, accessibility, generally, has to be implemented 00:27:43.660 --> 00:27:46.900 by individual companies, developers, website operators 00:27:47.720 --> 00:27:51.080 and is therefore a highly distributed phenomenon. 00:27:53.260 --> 00:27:57.500 There is no automatic way of understanding where this happens. 00:27:57.500 --> 00:28:02.940 Thus a lot of my research has involved tracking digital media accessibility through 00:28:03.400 --> 00:28:08.040 the policy makers, people working with the World Wide Web Consortium 00:28:08.040 --> 00:28:10.900 people working in government, in academic contexts, 00:28:11.460 --> 00:28:14.260 as well as with developers, consultants, 00:28:14.260 --> 00:28:18.240 sometimes marketing departments are in charge of accessibility, 00:28:18.600 --> 00:28:22.840 internal standards, a lot of major corporations have their own 00:28:22.840 --> 00:28:24.500 accessibility standards that 00:28:25.020 --> 00:28:28.220 are different to what we see in the public sphere 00:28:29.300 --> 00:28:34.740 and so in these terms accessibility may be understood in highly bureaucratic and 00:28:34.780 --> 00:28:37.500 technical. It creates a kind of base line 00:28:37.500 --> 00:28:42.040 from which there is a possibility that people with disabilities may then access 00:28:42.040 --> 00:28:43.340 and use digital media. 00:28:44.920 --> 00:28:51.080 In thinking about accessibility, however, it is important to think about the terminology. 00:28:51.560 --> 00:28:54.760 Because "accessibility", like "access", is an 00:28:55.100 --> 00:28:58.220 often-used term that is not always attached to 00:28:58.220 --> 00:29:00.140 these kinds of specialized meanings. 00:29:04.480 --> 00:29:08.880 I often see accessibility invoked to refer to new possibilities. 00:29:08.880 --> 00:29:11.540 The graphical user interface made desktop computing more accessible 00:29:11.540 --> 00:29:13.080 to a large number of people. 00:29:13.080 --> 00:29:17.720 Even as it very much shut down access for people who are visually impaired. 00:29:19.120 --> 00:29:22.480 Right, so we access deployed in various contexts. 00:29:22.480 --> 00:29:26.820 Additionally, access to media and information technologies has been a 00:29:26.820 --> 00:29:29.840 addressed in a wide range of academic literatures. 00:29:29.840 --> 00:29:33.540 From digital divides work to work on public broadcasting, 00:29:33.540 --> 00:29:36.140 community television, media literacy 00:29:36.940 --> 00:29:38.460 and media policy work. 00:29:39.780 --> 00:29:41.380 But in all of these areas 00:29:41.380 --> 00:29:44.800 access is dominantly figured as something which is "had". 00:29:45.120 --> 00:29:46.560 Do you "have" access? 00:29:48.420 --> 00:29:51.140 A sort of unitary and universally desired endpoint. 00:29:51.140 --> 00:29:53.740 Do you have access? It is good to have access. 00:29:53.740 --> 00:29:57.220 And in addition to this sort of positive and linear framing 00:29:57.220 --> 00:30:00.440 the concept of access is often deployed in such a way 00:30:01.880 --> 00:30:04.120 as to stand in for "availability" 00:30:04.120 --> 00:30:09.900 (you have access to the telephone lines as they connect to your house, even if you don't have a telephone), 00:30:09.900 --> 00:30:15.020 "affordability" (this is a subsidized service so therefore in some sort of way therefore 00:30:15.020 --> 00:30:17.440 it is more accessible), or "consumer choice" 00:30:19.060 --> 00:30:21.620 (you have access to 590 cable channels 00:30:21.620 --> 00:30:23.520 whether you want them all or not). 00:30:25.540 --> 00:30:27.620 So "access" is a flexible term. 00:30:27.920 --> 00:30:34.880 But when we center disability and accessibility and their specialized senses, the gaps in some of these 00:30:35.100 --> 00:30:37.100 literatures and usages emerge. 00:30:37.100 --> 00:30:40.580 In fact, it seems that access is inherently variable. 00:30:40.580 --> 00:30:44.340 It's dependant upon bodies, contacts and a host of other factors. 00:30:44.980 --> 00:30:49.380 When we say "check Facebook", we are potentially engaged in a wide 00:30:49.380 --> 00:30:52.700 range of technological and social practices that vary 00:30:52.700 --> 00:30:54.060 from person to person. 00:30:54.060 --> 00:30:58.320 As argued by Canadian disabilities scholar Tanya Titchkosky 00:30:58.320 --> 00:31:03.420 quote, "every single instance of life can be regarded as tied to access. To do anything is 00:31:03.980 --> 00:31:08.300 to have some form of access." Thus, rather than think of access as 00:31:08.300 --> 00:31:11.780 a binary, or linear progression, disability studies 00:31:11.780 --> 00:31:15.260 encourages us to conceive of it as a continually relationally 00:31:15.260 --> 00:31:17.980 produced means of engaging with the world. 00:31:19.120 --> 00:31:22.400 So we don't "have" access, we are "doing" access. 00:31:23.440 --> 00:31:28.960 Now in "Restricted Access" I use this a sort of jumping off point for thinking about 00:31:28.960 --> 00:31:33.880 how then can we study access as an infinitely variable and complicated phenomenon. 00:31:33.880 --> 00:31:37.480 Right? This is starting to sound impossible, if every 00:31:37.480 --> 00:31:39.280 construction of access is different. 00:31:39.520 --> 00:31:43.600 And thus I've been using the metaphor of a kind of "Access Kit" 00:31:43.600 --> 00:31:45.980 illustrated here with a sewing kit with 00:31:45.980 --> 00:31:52.740 a pair of scissors, some safety pins, needles, a thimble, other things you use for sewing... I'm not a sewer. 00:31:54.060 --> 00:32:00.540 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. 00:32:02.300 --> 00:32:05.420 You can use this to sew. 00:32:05.420 --> 00:32:08.300 Or you can take pieces and parts and use them differently. 00:32:08.300 --> 00:32:11.520 You might cut up something in your kitchen, you might use the safety pin 00:32:13.100 --> 00:32:14.700 to make a punk t-shirt or 00:32:14.880 --> 00:32:18.080 signal your safety in a post Donald Trump world. 00:32:19.800 --> 00:32:22.680 You may recombine these in different ways. 00:32:22.680 --> 00:32:28.260 And thus in sort of figuring access kit, what are some sort of categories of questions? 00:32:28.260 --> 00:32:31.560 What are some sort of ways that we can dig into access 00:32:31.560 --> 00:32:36.820 that will allow us to look through some different lenses at how that access is being created? 00:32:36.820 --> 00:32:43.240 I'm not going to go into detail here, except to say that I sort of loosely grouped these into categories of 00:32:43.940 --> 00:32:47.220 regulation, use, form, content and experience. 00:32:47.380 --> 00:32:49.300 Which I can talk about later. 00:32:49.300 --> 00:32:54.560 And together they encourage us to think about access as a relational phenomenon. 00:32:54.560 --> 00:32:57.820 Drawing attention to what a cultural studies perspective might call 00:32:57.840 --> 00:33:04.320 the articulations of bodies, technologies, institutions, geographies and social identities. 00:33:04.820 --> 00:33:10.100 So access is not one thing, but many. Not an end point, but also not a beginning. 00:33:10.100 --> 00:33:14.800 Nico Carpentier has referred to access as a precondition for participation 00:33:14.800 --> 00:33:16.720 before we can participate we must access 00:33:17.300 --> 00:33:21.940 but through the study of digital media accessibility for disability 00:33:22.800 --> 00:33:29.800 it's become evident to me that the production of access is an on-going part of participation in a digitally mediated society. 00:33:30.960 --> 00:33:35.280 Now one of my favourite examples in the book is the case of Tumblr. 00:33:35.280 --> 00:33:40.380 As some of you probably know, Tumblr is a multimedia microblogging platform 00:33:43.020 --> 00:33:48.380 that is characterized by the sharing or reblogging of posts across the network, 00:33:48.380 --> 00:33:52.060 the formation of interest groups, and a lesser emphasis on individual identity display. 00:33:52.460 --> 00:33:54.300 Than many social networks. 00:33:55.180 --> 00:34:00.220 It is, however, populated by user generated content and thus not obviously 00:34:00.220 --> 00:34:05.500 bound by the legal and technical requirements faced in government, educational or ecommerce spaces. 00:34:06.660 --> 00:34:10.340 Perhaps as a result, Tumblr is formally inaccessible. 00:34:10.659 --> 00:34:16.099 It is difficult to add alternate text to images, even if you wanted to and knew how. 00:34:16.100 --> 00:34:21.320 It features infinite scroll, which can be a challenge for many assistive technologies, 00:34:21.320 --> 00:34:25.320 and it uses very limited mark up features to indicate importance. 00:34:26.360 --> 00:34:30.840 Additionally, the content is highly variable and often animated. 00:34:30.840 --> 00:34:35.400 Adding additional challenges from an accessibility perspective. 00:34:35.400 --> 00:34:41.719 So from a sort of top down perspective, the inaccessibility of Tumblr seems like a problem. 00:34:42.719 --> 00:34:47.518 However, in my work I've tried to couple the institutional perspective 00:34:48.100 --> 00:34:50.980 with a more on the ground user perspective. 00:34:51.280 --> 00:34:54.880 I did roughly 25 interviews with disabled users about 00:34:54.880 --> 00:34:58.500 how they use these technologies and why and what was frustrating. 00:34:59.780 --> 00:35:03.940 In these interviews I've got on the one hand, people telling me 00:35:03.940 --> 00:35:07.180 that they contact Tumblr and talked about the accessibility policies 00:35:07.620 --> 00:35:09.780 and were just totally rebuffed. 00:35:09.780 --> 00:35:13.180 Tumblr was not interested in talking to them, did not change anything. 00:35:16.160 --> 00:35:22.880 However, they also pointed towards group pages such as Accessibility Fail and F Yeah Accessibility 00:35:23.260 --> 00:35:28.380 as other places they were in fact finding community and using this platform. 00:35:30.600 --> 00:35:34.840 In some of these cases users were adopting and adapting Tumblr, 00:35:34.840 --> 00:35:38.020 sharing experiences of micro aggressions, sharing accessibility knowledge, 00:35:38.020 --> 00:35:42.300 teaching each other work arounds by which to make a site more accessible. 00:35:42.820 --> 00:35:46.420 Furthermore, this kind of grassroots accessibility 00:35:46.420 --> 00:35:49.320 revealed some different meanings of access. 00:35:49.320 --> 00:35:51.440 and the values associated with it. 00:35:52.020 --> 00:35:57.460 While accessibility is often through of as a matter of law, policy, or technology 00:35:59.760 --> 00:36:03.680 or the provision of services and a kind of charity model, 00:36:03.680 --> 00:36:08.340 many users were much more likely to talk about it in terms of affective and cultural dimensions. 00:36:08.720 --> 00:36:15.040 Many prioritized feeling welcomed rather than merely accommodated, or being included as 00:36:15.040 --> 00:36:17.700 members of a community rather than as afterthoughts. 00:36:18.980 --> 00:36:21.780 Or having their non-technical needs met. 00:36:21.780 --> 00:36:27.080 For instance, many disable Tumblr users praised the site because its large social justice community 00:36:27.080 --> 00:36:29.940 meant that trigger warnings were commonly used. 00:36:30.780 --> 00:36:36.460 Trigger warnings, or as we saw with Donal Trump, are a brief indication of when and how 00:36:36.460 --> 00:36:40.220 content might be upsetting for someone with a particular kind of trauma 00:36:40.220 --> 00:36:45.480 and they're well beyond the scope of technological accessibility policy. However, as one 00:36:45.480 --> 00:36:49.160 interviewee told me, "Trigger warnings make a site accessible to me." 00:36:49.160 --> 00:36:54.740 Indicating respect for the emotional and social needs that can often accompany disability. 00:36:54.820 --> 00:37:01.540 Building out of such examples, I end "Restricted Access" by talking about cultural accessibility 00:37:01.540 --> 00:37:04.800 as a means of moving towards a more accessible and just future. 00:37:04.800 --> 00:37:08.620 This moves beyond sort of technocentric notions of accessibility or 00:37:08.860 --> 00:37:14.460 accommodation and aims to highlight the interrelationships among technological 00:37:14.460 --> 00:37:20.840 and economic access, cultural representation and production, and access to community in the public sphere. 00:37:21.340 --> 00:37:26.780 Not simply universal design, cultural accessibility prioritizes the on-going 00:37:26.780 --> 00:37:31.740 perspectives and visibility of people with disabilities and it may best be achieved through 00:37:31.740 --> 00:37:37.400 sort of participatory collaborations between users, policy makers, industries and others. 00:37:39.240 --> 00:37:45.560 I've illustrated this concluding point with a screen shot of actress Teal Shearer, who created a web 00:37:45.560 --> 00:37:50.000 series called "My Gimpy Life" which she funded through Kickstarter. 00:37:50.120 --> 00:37:56.680 So already we're seeing a sort of host of contemporary digital media technologies brought to bear 00:37:58.380 --> 00:38:04.700 and in this case Shearer also prioritized disability, community and access both on screen and off. 00:38:04.700 --> 00:38:09.880 The web series had an onscreen credit to the person who produced the close captioning 00:38:09.880 --> 00:38:14.000 The Kickstarter page developed over time into more of a community space 00:38:14.020 --> 00:38:15.700 than a fundraising space 00:38:19.400 --> 00:38:24.600 and we see a range of relationships and connections forming that potentially 00:38:24.600 --> 00:38:30.280 enable the formation of community and the movement into a larger civic and public sphere. 00:38:31.240 --> 00:38:33.480 from inclusive cultural spaces. 00:38:33.480 --> 00:38:39.280 Ultimately then, I would argue that access is not simply a prerequisite to participation, 00:38:39.280 --> 00:38:42.289 access and participation depend upon one another. 00:38:42.289 --> 00:38:44.500 Just as access enables participation 00:38:46.020 --> 00:38:51.940 so does increased participation by diverse people make possible the expansion of access. 00:38:54.740 --> 00:38:56.820 And I will wrap it up there so that we have some time. [Audience applause]. 00:39:11.000 --> 00:39:16.200 Okay I'm going to start with one question for the three of you and then we can open 00:39:16.200 --> 00:39:18.120 it up as quickly as possible to Q&A. 00:39:18.120 --> 00:39:22.680 So it strikes me that constantly all of our work is constantly playing 00:39:22.920 --> 00:39:28.120 catch up with lived experience and Ryan I'm thinking of your work with Herdict 00:39:28.120 --> 00:39:31.240 is in some way, is always trying to close that gap 00:39:33.140 --> 00:39:37.860 between lived experiences of blockages or clogs or censorship online 00:39:37.980 --> 00:39:41.820 and the point at which there is greater public awareness 00:39:41.880 --> 00:39:43.240 about those blockages. 00:39:45.600 --> 00:39:50.240 And scholarship by design is sort of laggy because of the time it takes 00:39:50.240 --> 00:39:53.980 to dwell on things and the time it takes to publish things 00:39:55.000 --> 00:39:57.080 so I wonder how each of you think 00:39:58.900 --> 00:40:02.340 about lagginess with regard to lived experience in 00:40:03.760 --> 00:40:05.280 each of your projects. 00:40:05.280 --> 00:40:07.000 Maybe we can start with Ryan. 00:40:10.380 --> 00:40:13.580 So I'll just first preface my response by saying 00:40:17.180 --> 00:40:20.380 as Dylan mentioned in my introduction I spend my 00:40:25.800 --> 00:40:28.920 work days thinking about access to technology 00:40:31.100 --> 00:40:34.380 and who controls these sort of elements of the web 00:40:35.960 --> 00:40:38.520 and the internet and our technologies 00:40:40.600 --> 00:40:45.160 but in my personal life as someone who wears hearing aids I think a lot 00:40:46.260 --> 00:40:49.380 sort of in the very specific use case of how that 00:40:51.020 --> 00:40:54.140 technology enables and limits me personally 00:40:55.080 --> 00:40:56.360 in different ways. 00:40:59.940 --> 00:41:01.060 And so I found the 00:41:01.720 --> 00:41:05.160 discussion from Liz and Meryl really interesting 00:41:06.260 --> 00:41:07.300 and important. 00:41:08.100 --> 00:41:11.620 So on this question of lagginess, you know, one of the 00:41:13.180 --> 00:41:15.260 things that really jumps out at 00:41:15.880 --> 00:41:18.520 me and I think picks up on something that 00:41:19.220 --> 00:41:21.300 Meryl was saying, was that this 00:41:21.940 --> 00:41:23.460 question of, you know, 00:41:25.300 --> 00:41:26.980 technology reproducing 00:41:29.260 --> 00:41:31.020 structural inequalities 00:41:33.860 --> 00:41:37.140 and something that I think is on that point is 00:41:38.200 --> 00:41:39.880 interesting to me is that 00:41:41.360 --> 00:41:42.160 I see a lot of 00:41:45.800 --> 00:41:48.360 convergence going on in technologies 00:41:49.360 --> 00:41:51.600 that, as Meryl's example showed, 00:41:51.780 --> 00:41:54.100 that people can use iPads which are 00:41:54.100 --> 00:41:56.780 consumer technologies to do things that 00:41:57.520 --> 00:41:59.440 earlier might have required 00:42:00.920 --> 00:42:03.480 going through a medical specialist or 00:42:07.680 --> 00:42:10.800 getting very expensive medical technologies 00:42:10.800 --> 00:42:13.280 and in the hearing aid market there is a lot of 00:42:15.140 --> 00:42:17.300 movement now to allow companies 00:42:17.300 --> 00:42:19.000 to sell things that aren't quite hearing aids 00:42:19.000 --> 00:42:21.360 but do essentially everything that 00:42:22.100 --> 00:42:23.540 a hearing aid could do 00:42:26.580 --> 00:42:28.740 and there is a lot of pros and cons 00:42:28.740 --> 00:42:31.980 to that approach, you know, there's the potential 00:42:31.980 --> 00:42:35.620 that it could lower the cost that a lot of people that don't get hearing aids 00:42:36.120 --> 00:42:38.280 could suddenly get hearing aids 00:42:39.360 --> 00:42:42.160 but no longer are they having it fine tuned 00:42:42.160 --> 00:42:43.360 by a medical professional 00:42:47.280 --> 00:42:49.760 and all of that, and so as you converge 00:42:52.220 --> 00:42:54.540 sort of mainstream technology and 00:42:54.540 --> 00:42:56.060 technology that helps people with disabilities 00:42:58.100 --> 00:42:59.700 in some ways I think that 00:43:00.020 --> 00:43:02.340 you can turn Meryl's question into 00:43:02.860 --> 00:43:03.980 or prompt around 00:43:06.060 --> 00:43:06.560 and say 00:43:07.520 --> 00:43:12.080 in what ways is all technology reinforcing societal and structural 00:43:15.020 --> 00:43:18.300 inequalities and, you know, to Sarah Hendren has 00:43:18.300 --> 00:43:20.340 talked about how all technology is 00:43:20.340 --> 00:43:23.840 assistive technology. You know, we're not naturally born with 00:43:24.200 --> 00:43:27.240 the ability to get our emails on our wrists and 00:43:27.240 --> 00:43:30.420 you know, and yet, technology enables us to do that. 00:43:33.680 --> 00:43:37.760 So in what ways is technology that all of us are using in assistive ways 00:43:39.900 --> 00:43:44.300 reproducing things that maybe we should be taking a closer look at? 00:43:46.740 --> 00:43:48.900 One example that comes to mind is 00:43:52.280 --> 00:43:53.960 how autonomous vehicles 00:43:53.960 --> 00:43:57.540 are certainly something, you know, to talk about access, 00:43:58.540 --> 00:44:00.780 can potentially allow people who 00:44:00.780 --> 00:44:03.840 either physically can't drive or they're too old to drive 00:44:05.800 --> 00:44:07.720 allows them to have mobility 00:44:09.420 --> 00:44:11.100 as ride sharing services 00:44:12.080 --> 00:44:17.200 will start using it there is the potential to open up access for lots of people 00:44:17.200 --> 00:44:20.040 and yet ride sharing and autonomous vehicles often 00:44:20.040 --> 00:44:21.280 rely very heavily on 00:44:22.420 --> 00:44:26.100 mapping and so parts of the world are simply not mapped. 00:44:26.100 --> 00:44:28.260 And those places don't get access. 00:44:28.720 --> 00:44:30.960 And so there is an example of where 00:44:31.860 --> 00:44:35.220 technology, taken out of the disability context, 00:44:36.020 --> 00:44:38.900 but something that you could characterize 00:44:39.640 --> 00:44:41.000 at a very basic level 00:44:41.000 --> 00:44:42.800 as accessibility technology 00:44:45.660 --> 00:44:50.460 is itself going to potentially reproduce the structural inequalities 00:44:50.460 --> 00:44:52.520 that places like the favelas in Brazil 00:44:53.320 --> 00:44:56.360 are very heavily populated but are not mapped 00:44:56.360 --> 00:44:57.840 will not have access to these technologies. 00:44:58.480 --> 00:45:02.640 I'm not quite sure that answers your question about lagginess 00:45:05.260 --> 00:45:10.220 But there are just some bigger questions to me about technology in general 00:45:10.480 --> 00:45:13.680 and how that's reproducing these inequalities 00:45:15.280 --> 00:45:18.160 and I think it does raise these questions of 00:45:18.160 --> 00:45:20.120 you know, from a lagginess perspective 00:45:23.160 --> 00:45:26.040 that we have to sort of think of these things 00:45:26.040 --> 00:45:26.960 in their broader context and not 00:45:27.400 --> 00:45:29.400 just in a disability context. 00:45:30.980 --> 00:45:37.300 I'll just say something very briefly because then I want to make sure we have time for questions 00:45:38.260 --> 00:45:40.020 but just talking about lag 00:45:40.060 --> 00:45:43.580 and delay and whether that's a negative or a positive thing 00:45:44.840 --> 00:45:46.700 or an inevitable thing 00:45:47.140 --> 00:45:48.600 but I immediately thought of when you brought up 00:45:48.600 --> 00:45:52.900 you know the relational, or the sort of act of access, it is a process 00:45:52.900 --> 00:45:53.960 and not just a product. 00:45:53.960 --> 00:45:56.660 Thinking about with speech generating devices 00:45:56.660 --> 00:45:59.220 that it can take a while to create a message 00:45:59.220 --> 00:46:01.460 for it to then be output for somebody to say. 00:46:03.160 --> 00:46:06.920 The fluidity with which one might be able to potentially 00:46:08.500 --> 00:46:10.580 depending on what kind of motor 00:46:10.580 --> 00:46:12.440 impairment they might or might not have 00:46:12.440 --> 00:46:16.240 the patience that is required for a conversation partner 00:46:16.240 --> 00:46:19.920 even if you've got a technology that works well, it's top of the line, it's fully charged, 00:46:19.920 --> 00:46:21.180 that's a whole other thing 00:46:22.200 --> 00:46:25.320 can't talk if the thing doesn't have any juice. 00:46:25.320 --> 00:46:30.060 that the patience that is required of somebody else to follow a pace of conversation 00:46:30.700 --> 00:46:35.500 that might not be that one that they themselves enact or are use to having with another person. 00:46:38.760 --> 00:46:44.300 So that process, that patience, and that is something that is learned and something that 00:46:44.480 --> 00:46:46.460 somebody who doesn't have a speech disability would have to be able to become 00:46:46.620 --> 00:46:47.860 better at equiped at 00:46:47.860 --> 00:46:50.960 So think about the kinds of personal, social and cultural 00:46:51.180 --> 00:46:54.140 equipment that is needed for participation 00:46:54.140 --> 00:46:55.920 and that gets sort of like added to the 00:46:55.920 --> 00:46:59.520 list here just thinking about temporality in that way. 00:47:24.760 --> 00:47:26.520 It's just a small comment. 00:47:27.820 --> 00:47:30.060 I'm from Columbia. 00:47:30.060 --> 00:47:36.360 We don't have that many resources so we have to come up with creative solutions. 00:47:36.360 --> 00:47:40.840 The main problem with these kinds of issues is the economies of scale. 00:47:40.840 --> 00:47:45.260 As the population is not big, the market is not providing solutions for them. 00:47:45.980 --> 00:47:48.620 So for example in the case of deaf people... 00:47:50.560 --> 00:47:52.480 we create this relay center 00:47:52.480 --> 00:47:53.660 with sign language. 00:47:56.820 --> 00:47:59.780 So a person who is deaf could connect to an app 00:48:03.060 --> 00:48:06.820 and this remote person can translate from sign language 00:48:07.120 --> 00:48:09.760 so the deaf person can present an exam or 00:48:09.760 --> 00:48:13.740 have a consultation with a doctor or rely any kind of communication 00:48:13.740 --> 00:48:16.940 so this is one example of a solution to economies of scale. 00:48:17.440 --> 00:48:21.200 The other is we buy a country license for a screen reader. 00:48:25.500 --> 00:48:28.380 So one license is, I think, $1000 per person 00:48:29.060 --> 00:48:29.620 per year 00:48:29.620 --> 00:48:34.380 but if you buy a country license where it's less than $1 per person, per year 00:48:35.860 --> 00:48:37.540 or per computer, per year 00:48:40.820 --> 00:48:44.180 We buy thousands of thousands of licenses so we can 00:48:44.180 --> 00:48:46.480 install a license in every internet cafe 00:48:46.480 --> 00:48:47.780 in every school, for example. 00:48:49.660 --> 00:48:52.540 People are not paying because it's so cheap 00:48:56.080 --> 00:48:59.680 to charge for, so for example, the school pays a little 00:48:59.680 --> 00:49:02.160 and we gather all this money and buy a country license, 00:49:02.160 --> 00:49:05.940 which is tremendously cheaper than paying individually. 00:49:13.000 --> 00:49:17.960 I hadn't heard about country licenses. That's really fascinating, I want to know more. 00:49:20.320 --> 00:49:22.960 But in terms of scale, we may think about 00:49:22.960 --> 00:49:26.440 the sort of things that Ryan brought up with mainstreaming as being one 00:49:26.440 --> 00:49:30.460 way in which mainstream technologies are taking on assistive functions 00:49:30.800 --> 00:49:33.600 which enables a different kind of scaling 00:49:33.600 --> 00:49:36.380 When we are talking about assistive technologies 00:49:37.320 --> 00:49:39.080 that are developed as such 00:49:39.080 --> 00:49:43.780 they're often very expensive because there's a small market and a lot of research that goes into them. 00:49:46.520 --> 00:49:49.640 When those can be deployed in consumer devices 00:49:49.780 --> 00:49:52.420 some of those costs go down but as I think 00:49:52.580 --> 00:49:56.260 Ryan indicated sometimes oversight goes down as well. 00:49:56.260 --> 00:49:59.080 You don't have a medical professional adjusting the hearing aids 00:49:59.580 --> 00:50:02.940 I've been doing some research on emergency lately 00:50:02.940 --> 00:50:06.860 and you don't really have very good connections to 911 when 00:50:06.860 --> 00:50:08.580 you're relying on an app to dial it for you. 00:50:09.620 --> 00:50:12.500 So there are ways in which that is changing. 00:50:17.000 --> 00:50:20.440 I just had a question about the differences between 00:50:20.980 --> 00:50:22.740 adults and kids 00:50:24.180 --> 00:50:26.000 and particularly I think that there is often 00:50:26.040 --> 00:50:30.440 you know, talking about voice and voiceless, you know, many times 00:50:33.780 --> 00:50:35.060 kids are voiceless 00:50:36.040 --> 00:50:37.880 either simply because they 00:50:37.880 --> 00:50:40.000 aren't at the emotional or intellectual 00:50:41.100 --> 00:50:44.220 place where they can talk about what is going on 00:50:44.220 --> 00:50:46.860 or legally their parents speak for them 00:50:48.460 --> 00:50:51.660 and I know from my personal experience when I was 00:50:52.880 --> 00:50:57.120 5 or 6 the last thing I wanted to be doing was wearing hearing aids 00:50:58.780 --> 00:51:01.900 and I didn't want people to ask me about them and 00:51:01.900 --> 00:51:04.700 if it was my choice I would have just taken them out 00:51:04.700 --> 00:51:06.380 but luckily it wasn't my choice 00:51:06.540 --> 00:51:09.500 And so I was wondering if you could talk about 00:51:09.500 --> 00:51:12.440 some of the differences that you guys have seen 00:51:14.020 --> 00:51:17.300 in particular, you quoted some parents talking, 00:51:17.740 --> 00:51:19.320 about their experiences 00:51:20.700 --> 00:51:25.420 I'd be interested to hear about how these issues of voice and voiceless 00:51:25.860 --> 00:51:29.700 and access are different or different challenges emerge 00:51:29.700 --> 00:51:32.440 when you're dealing with adults versus kids 00:51:37.560 --> 00:51:39.880 I've worked primarily with adults 00:51:39.880 --> 00:51:43.040 and in part that's because when we are looking at 00:51:44.260 --> 00:51:48.180 disability spaces there is a lot of attention often to K-12 00:51:49.820 --> 00:51:54.060 education and to particularly what can be done to help children 00:51:54.640 --> 00:51:59.040 and there is often a drop off of when those children become adults. 00:51:59.180 --> 00:52:03.340 So by looking at online spaces where people with disabilities 00:52:03.900 --> 00:52:08.700 were engaging with one another and creating disability culture I think 00:52:09.340 --> 00:52:13.900 I get an interesting sort of perspective on what happens after that. 00:52:13.900 --> 00:52:18.580 Right in that sort of less structured space but obviously for research on kids 00:52:18.580 --> 00:52:24.280 I think the kid focus is particularly just from my expertise and background more than anything 00:52:25.100 --> 00:52:27.660 Even then, thirteen tends to become my cutoff. 00:52:27.660 --> 00:52:30.660 Fourteen in the US, you're meant to at least federally, have a mandate 00:52:30.840 --> 00:52:33.360 mandate to talk about transition to adulthood 00:52:33.560 --> 00:52:36.520 and that's where I sort of stop, even though 00:52:36.760 --> 00:52:39.400 you can be like 30 and really be into Elmo 00:52:39.400 --> 00:52:43.260 and in my first book I talk in "Digital Youth with Disabilities" talk about 00:52:43.900 --> 00:52:48.460 age appropriateness and the fluidity with which radical spaces can 00:52:48.460 --> 00:52:52.360 potentially be created outside of related to interested or related to 00:52:52.360 --> 00:52:56.240 different cultural spaces like theater performances that 00:52:57.880 --> 00:53:04.120 have sensory inclusivity, sort of mixed aged, mixed abilities of all different sort of kinds 00:53:04.120 --> 00:53:07.060 and I think that with the book a lot of the research 00:53:08.880 --> 00:53:10.160 in terms of the kids 00:53:11.160 --> 00:53:13.640 there are the parents that are quoted 00:53:14.380 --> 00:53:17.980 In the book there are a lot of descriptors of behaviour 00:53:17.980 --> 00:53:20.900 and of interactions with kids and other individuals 00:53:23.100 --> 00:53:26.220 I did not have the skill to interview some of the 00:53:29.540 --> 00:53:32.020 kids in terms of their capacity to use 00:53:32.020 --> 00:53:35.480 ...the whole point was that they didn't have reliable access to communication 00:53:37.240 --> 00:53:43.160 and so the challenges of then doing that work outside of triangulating different sort of 00:53:43.600 --> 00:53:48.960 behaviours and different kinds of expressions, vocalizations or excitements 00:53:49.620 --> 00:53:53.220 in kinds of spaces. I would say for my next book project 00:53:53.220 --> 00:53:56.060 which is focused on the experiences of autistic youth 00:53:56.200 --> 00:53:58.120 growing up in the digital age 00:53:58.820 --> 00:54:01.880 and different kinds of ways that communication happens 00:54:02.560 --> 00:54:06.000 I'm grappling with that right now in terms of in interviews that I'm doing 00:54:07.620 --> 00:54:12.820 directly with kids, the ways that I talk with them about their media practices 00:54:12.820 --> 00:54:14.520 Again, some of that is oral and some of that is not 00:54:14.520 --> 00:54:16.540 and so part of that is sometimes the challenge of 00:54:16.540 --> 00:54:18.540 presenting fieldwork to an audience 00:54:19.120 --> 00:54:20.880 and the legibility of that 00:54:21.220 --> 00:54:23.380 as opposed to sort of just having 00:54:24.000 --> 00:54:26.400 a video or another kind of recording 00:54:26.400 --> 00:54:28.600 so that kind of gets at our methods and 00:54:30.700 --> 00:54:31.980 the ways in which we 00:54:32.260 --> 00:54:34.020 make our research visible 00:54:34.020 --> 00:54:36.340 and the ways in which certain kinds of visibilities 00:54:38.760 --> 00:54:40.920 can unintentionally privilege 00:54:40.920 --> 00:54:42.980 or reflect certain ways in which the research was or was not conducted. 00:54:48.980 --> 00:54:52.900 Hi, I have one comment about giving voice to the voiceless. 00:54:52.900 --> 00:54:55.160 I really liked the point about how voiceless 00:54:55.860 --> 00:55:00.280 is seen as a means for agency and self presentation. 00:55:00.280 --> 00:55:02.180 I was just thinking about if you change the headline to something different 00:55:02.220 --> 00:55:04.940 instead of giving voice to the voiceless 00:55:06.100 --> 00:55:09.300 to something like "Listen to the Unlistenable" 00:55:11.220 --> 00:55:13.700 it'll be a totally different focus on 00:55:14.960 --> 00:55:18.400 instead of on the person who needs to be given a voice 00:55:18.960 --> 00:55:22.080 it will be on behalf of us to train our listening capacity. 00:55:22.380 --> 00:55:25.740 So I don't know whether you've thought about that. 00:55:25.740 --> 00:55:27.520 Yeah, so listening and speaking 00:55:27.520 --> 00:55:31.160 and the dynamics between those things are something that I talk about more in the book 00:55:34.020 --> 00:55:38.660 and that gets a little bit to... There's a phrase I really, really love... 00:55:38.660 --> 00:55:40.060 A media justice scholar Tanya Draya talks about. The partial promise of voice 00:55:40.080 --> 00:55:43.280 So voice's incompletion, the partiality of it, 00:55:44.220 --> 00:55:48.700 to fully say that we have any kind of grasp or pin-downableness of it 00:55:49.580 --> 00:55:52.220 because that understanding of respect 00:55:53.560 --> 00:55:56.920 of a message being acted on and a promise being kept 00:55:56.940 --> 00:55:59.340 and that's partly in larger public sphere discussions 00:56:01.280 --> 00:56:03.840 but I think that point about listening 00:56:03.840 --> 00:56:05.280 whether one is able to be listened to or not... 00:56:05.900 --> 00:56:09.820 again that's a... Begin to think about that in a biological 00:56:10.140 --> 00:56:16.780 individual level, a social level, a political... You know... what the mechanisms are for feedback 00:56:16.780 --> 00:56:21.080 But also some of that can sort of reinforce who's in power in the first place. 00:56:23.760 --> 00:56:27.040 And in what ways can that still enforce an us/them 00:56:29.700 --> 00:56:34.420 An essentializing idea of having and not having of giving and not having. 00:56:38.980 --> 00:56:41.380 Hi, I have a comment then a question. 00:56:41.380 --> 00:56:43.680 I had the great pleasure and I will say some humility, 00:56:43.680 --> 00:56:45.060 about ten years ago 00:56:45.160 --> 00:56:47.960 I was teaching at Northeastern for adults 00:56:47.960 --> 00:56:50.620 and one of my students was a 74 year old blind man 00:56:50.680 --> 00:56:52.200 who lost his sight at 32 00:56:52.660 --> 00:56:54.900 and I learned the day in the life of 00:56:55.740 --> 00:56:59.340 someone who is disable and I had to rearrange my entire 00:57:01.580 --> 00:57:03.900 how I was going to structure an exam 00:57:03.900 --> 00:57:06.380 because we were in a computer class room and he had to go in a special room 00:57:06.540 --> 00:57:10.220 and if they didn't have the jaws then I would have to work 00:57:10.220 --> 00:57:14.480 with the Northeastern disability office to have someone come and have a reader 00:57:14.660 --> 00:57:18.900 read the exam to him and I learned something at the MA disability 00:57:20.320 --> 00:57:26.000 I just say, "oh just go to the bookstore and go and get volume 6 of the book for the class" 00:57:28.000 --> 00:57:31.120 and the one they had for the brail was version 3. 00:57:31.260 --> 00:57:33.660 Things that we just take for granted. 00:57:33.660 --> 00:57:35.140 It's just very humbling 00:57:35.140 --> 00:57:37.420 Another time I was at an event where 00:57:39.180 --> 00:57:41.500 there was a company who had an event 00:57:41.500 --> 00:57:44.440 at the faculty club where they were talking and saying that many 00:57:44.440 --> 00:57:46.400 times when they have events here 00:57:46.400 --> 00:57:48.680 or classes they have closed captioning 00:57:48.900 --> 00:57:52.100 and they said that many times foreign students, 00:57:52.400 --> 00:57:55.120 to help them learn English, are using it. 00:57:55.120 --> 00:57:58.620 So that's like the number one reason in addition to disability. 00:57:59.460 --> 00:58:01.140 So my question here is... 00:58:01.140 --> 00:58:02.460 We're in an area where we have so many start-ups 00:58:02.460 --> 00:58:06.460 and just like until recently, cyber security and writing secure code is 00:58:08.300 --> 00:58:13.900 an after thought... disability for many places is like, "yeah, yeah, whatever..." 00:58:15.800 --> 00:58:19.640 Is there anything that can be done to teach the CS students 00:58:21.420 --> 00:58:25.980 that are coming to our courses, at MIT, here at Harvard, the people who 00:58:25.980 --> 00:58:28.280 before they start their careers, to incorporate it into 00:58:31.420 --> 00:58:35.100 design so it's not... So let's take it and make it part of 00:58:35.540 --> 00:58:37.300 how you learn how to create 00:58:37.300 --> 00:58:39.940 So you will not have these credible disparities 00:58:41.740 --> 00:58:43.020 in accessibility. 00:58:43.960 --> 00:58:45.640 One thing I would say is to 00:58:46.980 --> 00:58:50.980 read histories of people with disabilities as actors in the 00:58:50.980 --> 00:58:52.420 history of the development of computing. 00:58:53.100 --> 00:58:56.460 So the idea that it is more like you're not adding on 00:58:56.460 --> 00:59:02.140 disability... Like, the recovery of people with disabilities in computing history or engineering history 00:59:04.080 --> 00:59:07.280 is really central to that idea of not developing 00:59:07.280 --> 00:59:08.560 a sort of charity model 00:59:09.040 --> 00:59:11.840 of disability pedagogy in a field like CS. 00:59:14.560 --> 00:59:16.000 I'll just add to that. 00:59:16.000 --> 00:59:17.960 I've done some work on how web accessibility 00:59:18.060 --> 00:59:22.140 was explicitly an afterthought in teaching web development 00:59:22.140 --> 00:59:22.980 for many, many years. 00:59:22.980 --> 00:59:25.860 In the sense that it would be the last chapter of the book 00:59:25.860 --> 00:59:29.240 Once you've learnt to do everything else, maybe you'll look at this 00:59:29.420 --> 00:59:30.940 but you probably won't 00:59:30.940 --> 00:59:35.480 And that's something that's borne out of a lot of computer studies curriculum. 00:59:36.020 --> 00:59:38.580 They don't have courses on accessibility 00:59:38.580 --> 00:59:43.460 and basic lessons don't incorporate it as something that you do as part of a process. 00:59:43.760 --> 00:59:48.400 The International Association of Accessibility Professionals is a 00:59:48.400 --> 00:59:51.200 young organization maybe four or five years old 00:59:52.260 --> 00:59:56.820 that's explicitly attempting to address that by making some sort of 00:59:58.100 --> 01:00:00.500 best practices for CS education and 01:00:00.500 --> 01:00:02.700 offering some certifications for people who have 01:00:03.000 --> 01:00:08.120 actual training in accessibility to use once they go out into the job market. 01:00:10.640 --> 01:00:14.400 Then of course there is a whole world of universal design 01:00:14.400 --> 01:00:16.120 and design for disability and design literatures 01:00:17.580 --> 01:00:18.700 focused on how to 01:00:19.620 --> 01:00:22.660 incorporate diverse users at an early stage. 01:00:25.540 --> 01:00:28.980 I was just going to say that I am somewhat optimistic 01:00:30.120 --> 01:00:31.640 in this sense right now 01:00:32.460 --> 01:00:34.860 because I think that when you look at 01:00:35.760 --> 01:00:38.400 things like wearable technologies and 01:00:39.400 --> 01:00:40.760 there's so much more 01:00:40.860 --> 01:00:43.100 focus right now on the mainstream 01:00:43.100 --> 01:00:45.760 and I think this gets back to this kind of convergence point 01:00:45.760 --> 01:00:47.940 there is so much more focus right now on 01:00:47.940 --> 01:00:50.660 human-machine interaction and artificial intelligence 01:00:50.660 --> 01:00:52.220 and a lot of the technologies 01:00:52.260 --> 01:00:54.020 that are necessary to make 01:00:56.140 --> 01:00:57.340 wearables better 01:00:58.100 --> 01:01:02.820 to make augmented reality better, to make autonomous vehicles better 01:01:03.820 --> 01:01:06.300 the improvements that have been made 01:01:07.920 --> 01:01:11.840 over the last several years in computer vision technology 01:01:13.800 --> 01:01:17.560 all of those things will help on this lagginess question 01:01:18.420 --> 01:01:23.780 I think it's that as more technology and these start-ups are thinking more about 01:01:23.780 --> 01:01:26.360 how machines interact with the physical world 01:01:26.360 --> 01:01:28.800 they're solving some of these problems 01:01:28.880 --> 01:01:31.280 that maybe have traditionally been 01:01:31.440 --> 01:01:33.920 have been the after thought problems 01:01:34.900 --> 01:01:38.100 and they're not approaching it in the mindset of 01:01:38.100 --> 01:01:40.120 how do we solve problems with people with disabilities 01:01:41.140 --> 01:01:43.380 but I think that the applications 01:01:43.380 --> 01:01:45.160 are getting closer and closer 01:01:45.540 --> 01:01:48.180 so that it's not such a leap to figure out 01:01:48.180 --> 01:01:50.180 oh, we designed this thing, now we have to 01:01:50.180 --> 01:01:53.280 figure out how to apply it in a whole new context 01:01:53.680 --> 01:01:56.960 but it's actually like, oh, we now have something 01:01:57.140 --> 01:02:00.180 that can identify what's going on in this room 01:02:00.180 --> 01:02:03.020 because we need it for our artificial intelligence technology 01:02:03.020 --> 01:02:05.760 and that makes it super easy to design something for someone 01:02:05.760 --> 01:02:07.960 with a visual impairment. So, I'm optimistic. 01:02:10.280 --> 01:02:13.560 So just a quick comment on that last bit, there is an 01:02:13.560 --> 01:02:16.940 industrial thing called Teach Access 01:02:18.120 --> 01:02:21.400 it's a consortium of a number of the big companies 01:02:22.580 --> 01:02:25.220 are trying to put together curricula to 01:02:25.220 --> 01:02:26.980 distribute throughout a bunch of universities for specifically integrating 01:02:27.240 --> 01:02:28.920 it into the CS curriculum. 01:02:28.920 --> 01:02:31.620 There's a lot of trouble there because a lot of the 01:02:31.620 --> 01:02:34.060 industries are trying to hire people and 01:02:34.060 --> 01:02:35.620 nobody knows anything about it 01:02:35.620 --> 01:02:38.000 and so this is actually a pull from industry to try and 01:02:38.620 --> 01:02:40.860 be able to key that up a little bit. 01:02:42.540 --> 01:02:44.460 So it's something to look at. 01:02:44.460 --> 01:02:45.380 I just had a question. A lot of the 01:02:45.640 --> 01:02:48.520 regulatory issues and the policy issues in 01:02:48.520 --> 01:02:50.520 accessibility have to do with 01:02:51.020 --> 01:02:55.580 things around either livelihoods or access to government services 01:02:55.580 --> 01:02:59.680 these things that are really very instrumental in getting things done in your life. 01:03:00.100 --> 01:03:02.980 I'm wonder if you could speak a little bit to 01:03:03.240 --> 01:03:07.800 issues around entertainment or just sociality of just interacting 01:03:07.800 --> 01:03:13.280 because as much more of our lives become mediated the access of these things become much more critical 01:03:13.880 --> 01:03:14.840 to just our lives. 01:03:16.220 --> 01:03:19.900 And I don't see a lot of discussion about that in a lot of disability discussions. 01:03:22.200 --> 01:03:26.680 I think the place you see the most discussion of that sort of thing is 01:03:27.800 --> 01:03:28.840 in captioning. 01:03:28.840 --> 01:03:33.360 Particularly, in the past several years as Netflix captioned its content 01:03:34.140 --> 01:03:36.940 both the activism around that and then the 01:03:39.860 --> 01:03:42.660 21st Century Video and Communication Act 01:03:42.860 --> 01:03:46.700 took some steps towards prioritizing that kind of access 01:03:46.700 --> 01:03:49.800 But I think it's a really intesting question to think 01:03:49.800 --> 01:03:52.120 about content and what we're gaining access to 01:03:54.600 --> 01:03:59.160 and making sure that access to video games and access to pornography 01:03:59.220 --> 01:04:04.420 are still kinds of access, and people with disabilities are not less entitled 01:04:05.480 --> 01:04:09.800 to things that we think are morally dubious than are other people. 01:04:09.800 --> 01:04:14.700 So there's certainly some tension there, right? Because government doesn't want to get into 01:04:16.420 --> 01:04:19.940 that if they can avoid it. But I'm encouraged because 01:04:20.220 --> 01:04:23.580 I see that that's also happening in informal ways. 01:04:26.260 --> 01:04:29.060 Major league baseball did what's called a 01:04:29.060 --> 01:04:30.840 structured negotiation where instead of a lawsuit 01:04:30.840 --> 01:04:33.760 they worked with disabled community memebers 01:04:34.480 --> 01:04:38.800 to make websites and streaming baseball games more accessible. 01:04:41.840 --> 01:04:47.280 So that's something where the mandate for MLB to be accessible is not really there 01:04:48.160 --> 01:04:51.440 but through some processes of introductions and collaboration 01:04:52.900 --> 01:04:56.740 you can actually get to places where that content is being 01:05:00.460 --> 01:05:03.420 addressed but it's very much not from the W3C. 01:05:04.840 --> 01:05:07.640 There's a chapter in the book that's about 01:05:07.960 --> 01:05:11.880 centering on... The question is like 'what is an iPad for?' 01:05:14.660 --> 01:05:19.300 There were these real tensions around whether an iPad was for that app exclusively 01:05:20.000 --> 01:05:23.200 or whether it was also for all of the other things 01:05:23.200 --> 01:05:25.640 that any of the other things that a person might use it for 01:05:26.240 --> 01:05:28.800 and a lot of things that were related to 01:05:30.040 --> 01:05:33.560 issues around taste, related to issues of ownership, 01:05:34.360 --> 01:05:39.160 the idea of whether you had multiple different pieces of those hardware 01:05:39.160 --> 01:05:42.940 to delineate and make distinctions between what each of those things are for 01:05:42.940 --> 01:05:46.860 but for me the real lightening strike in that was I was doing an observation 01:05:47.600 --> 01:05:53.120 and the speech pathologist I was with had very negative things to say about YouTube 01:05:53.120 --> 01:05:56.500 even though it was clearly something that the kid enjoyed 01:05:58.260 --> 01:06:02.660 that motivated them to use this app in the first place to communicate 01:06:03.380 --> 01:06:09.300 but there were lots of values about kids and their iPads and their YouTubes and are shut down 01:06:09.300 --> 01:06:12.080 and the ways that that particularly extra marginalized 01:06:12.240 --> 01:06:17.520 families who maybe didn't have access to, or the ability to mobilize resources 01:06:17.520 --> 01:06:19.700 I want to also phrase it as that way 01:06:19.960 --> 01:06:24.920 around English language, mobilize resources around community members 01:06:24.920 --> 01:06:27.260 who had other kinds of access to other kinds of resources 01:06:27.260 --> 01:06:31.640 social capital, the cultural capital to push bak against that person 01:06:32.700 --> 01:06:33.340 in any way 01:06:35.080 --> 01:06:41.800 Especially because an iPad is designed to be a consumption technology not necessarily for creation 01:06:41.920 --> 01:06:43.920 and somewhat for circulation 01:06:43.920 --> 01:06:47.320 just thinking about the people wanting to take advantage of 01:06:47.320 --> 01:06:50.920 all of these things that can be done but some of the professional 01:06:52.980 --> 01:06:57.380 push backs around expertise and it's a mainstream technology but 01:06:57.380 --> 01:07:02.080 it entered the home through the teachings of somebody with a professionalization 01:07:02.700 --> 01:07:05.660 and certain sort of things attached to that. 01:07:05.760 --> 01:07:07.360 More of that in the book. 01:07:08.040 --> 01:07:15.040 Okay thanks every, again there are books. I'll just say there are books for purchase at the back of the room 01:07:15.820 --> 01:07:20.460 and thank you so much for coming out. Liz and Meryl and Ryan will be here. 01:07:20.460 --> 01:07:22.780 A round of applause for our guests. [Audience applauses].