Meryl Alper is Associate Professor of Communication Studies at Northeastern University. Her research explores the social and cultural implications of communication technologies, with a focus on disability and digital media, children and families' technology use, and mobile communication.
We discuss histories of technological invention by disabled communities, the backlash against poor algorithmically transcribed captions or ‘craptions’, what it actually means for a place or a technology to be accessible to disabled communities with additional socio-economic constraints, and the kinds of assistive augmented communication devices (AAC), like the one used by Stephen Hawking, that are being built by non-speaking people to represent different kinds of voices.
READING LIST:
Alper, M. (2017) Giving Voice: Mobile Communication, Disability, and Inequality. Cambridge: MIT Press.
Alper, M. (2021) 'Critical Media Access Studies: Deconstructing Power, Visibility, and Marginality in Mediated Space' International Journal of Communication, Vol. 15. https://ijoc.org/index.php/ijoc/article/view/15274
Steve Silberman, Neurotribes
Erik Michael Garcia, We’re Not Broken
TRANSCRIPT:
KERRY MACKERETH:
Hi! We're Eleanor and Kerry. We're the hosts of The Good Robot podcast, and join us as we ask the experts: what is good technology? Is it even possible? And what does feminism have to bring to this conversation? If you wanna learn more about today's topic, head over to our website, where we've got a full transcript of the episode and a specially curated reading list with work by, or picked by, our experts. But until then, sit back, relax, and enjoy the episode.
ELEANOR DRAGE:
Today we’re talking with Meryl Alper, Associate Professor of Communication Studies at Northeastern University. Her research on communication technologies focuses on disability and digital media. In our conversation we discuss histories of technological invention by disabed communities, the backlash against bad algorithmically transcribed captions or ‘craptions’, what it actually means for a place or a technology to be accessible to disabled communities with additional socio-economic constraints, and the kinds of assistive augmented communication devices (AAC), like the one used by Stephen Hawking, that are being built by non-speaking people to represent different kinds of voices.
KERRY MACKERETH:
Thank you so much for joining us. You've had such a fascinating career working in educational children's media for Nickelodeon and Disney, as well as all the amazing work you're doing now disability and technology. So could you introduce yourself and tell us what brought you to your current work? And also how you situate yourself in relation to this work?
MERYL ALPER:
Sure, well, thank you for having me. I'm really excited to be here and take part in these conversations. So yes, my name is Meryl Alper. And at least as of this recording, I'm an Assistant Professor emphasis on the Assistant, Professor of Communication Studies at Northeastern University in Boston in the US, and how I can in general, I study the social and cultural implications of communication technologies, but within that the populations that have been most interested in our kids, individuals with disabilities and kind of the overlap between those populations. And so how I got into doing that work, it was really - it started on the kids side of things that I guess had had this career of sorts working in the children's media industry, in that space. And one of the first projects that in my graduate studies I took up was this analysis of YouTube videos that parents had posted of their kids unboxing and playing with the iPad when it first came out. So I started grad school in 2010. And those videos were really interesting in just the claims that were being made about the technology and how amazing it was, or claims about how smart you know that these kids were that they could master the iPad. But there was also this whole other set of videos that I did not really know how to code or analyse sufficiently. And they were videos of parents of kids with disabilities who were watching their kid on the iPad saying, Oh, I didn't know that my kid knew these things, knew these letters, knew these numbers, knew these concepts, because they're displaying it to me through what they're doing through this technology. Because an iPad, it's a larger touchscreen than, say, a phone. The user interface may be more intuitive. But I had studied Child Development, I’d worked studying kids, you know, studying them as they watched TV and what they learn from it, but I hadn't spent much time thinking about disability as one axis of difference that shapes learning with technology. So the first place I then kind of went to was in USC Occupational Therapy department, they had a class on assistive technology. Because I just thought, you know, I see a technology, it's related to disability, you know, that's what I'll jump into. So I came for the computer stuff. But then I stayed for the whole breadth of the field of assistive technology, I learned about things like how to prevent pressure sores for folks who are wheelchair users, positioning, that kind of stuff that was also under the umbrella of technology. And, again, I just started to match a lot of patterns between what was being talked about in relation to technology, theories of technology from my communication side, whether that was talking about technological determinism, or whether that was talking about the politics of technology. And here I was in this more sort of medical space with folks who were practising clinicians, who were introducing me to all of these other languages, all of these other institutions and infrastructures that I felt like my field didn't really have any language for, or at least didn't see as a valid form of communication technology. And specifically, I honed in on this one part of assistive technology called augmentative and alternative communication, which I can get into more later, but it's a type of technology - the word communication is literally in it - but it was not at all, it didn't appear anywhere in this literature on communication or mobile communication technologies. So that's how I really jumped into it. And to just say one more thing, I don't identify as a disabled person. And knowing that my entry point to it was in this medical space that I had to really read up and talk and really position my work in ways that weren't always forefronting that medicalized framing that was thinking in these more critical, sociological ways, the other tools in my toolbox, to understand the broader systems in which these technologies were being introduced to people. But how the everyday phones that you have in your pocket can also be assistive technologies.
ELEANOR DRAGE:
We’re called The Good Robot. That's our provocation. And with this in mind, we'd like to ask you what good technology means to you? Can there be good technology? And what can it look like?
MERYL ALPER:
I think it's kind of a paradox in that, as I just mentioned, there's a politics of technology and no technology is politically neutral, there's no neutrality. But at the same time, it's hard to classify technologies as either purely good or purely bad, I think. That kind of classification is maybe easier on a subjective than an objective level. I mean, there's lots of great examples that we can, I think, think of as ‘that was truly an amazing use, or an interesting feature’, or ‘that was purely an evil use of this technology’. But I guess I'm always really interested in these moments of fracture or dissonance between the work that I do that is primarily ethnographic in nature, but I also do some more historical and survey-oriented work. But these moments where my idea of something being good or having a kind of value is very different from that of the people that I'm spending time with. So for my dissertation project, and the book that came out of it, Giving Voice: Mobile Communication, Disability, and Inequality, there was this moment where I was talking to a mom of two autistic kids, one of them who was non-speaking, and who used one of these assistive communication technologies, and I said something along the lines of, you know, surely it's not like Steve Jobs alone is to thank for this technology. And it's not as if this technology is “revolutionary”. And she was, you know, kind of taken aback a little bit and said, No, actually, I do thank Steve Jobs. And I do think this technology is revolutionary. And thinking back on it, that was this moment, another one of my dissertation committee members, Ellen Seiter at University of Southern California (USC) talks about folk theories of media effects. So there is an academic way of talking about these technologies. And that's not to say that that makes them any less valid. But what’s also valid is the emotional, the affective experiences, and the framings that people have around these technologies. So I think one way to answer that question is, when we're talking about whether a technology is good or bad, we're always talking about more than just technology. Whenever we're talking about technology in any way, we're talking about more than just technology. But the questions that I think are the most central are ones like who stands to benefit the most or be harmed in the most significant way by any technology? And who creates the conditions under which technologies are used in the first place?
KERRY MACKERETH:
And following up on this question of harms, we'd be interested in hearing a little bit more about how some technologies are currently inhibiting societal, cultural and civic participation for people with disabilities?
MERYL ALPER:
Yeah, it's this double edged sword where there's technologies that, you know, we talk about accessibility. But there are some wonderful tools that at the same time, are enabling or are allowing people to participate, not just in new ways, but in more forceful or more powerful ways, more agenda-setting ways. And those same technologies, though, in different contexts can be poorly executed and end up sort of disenfranchising or excluding people. So I'll just give one one example. And this is not what my research specifically focuses on, but in terms of a type of technology we can think about captioning, and especially in this era of remote teaching, remote video conferencing, remote everything and, you know, audio qualities that are maybe not the best, or people who are watching a video or watching a lecture and there's a screaming child or a barking dog in the background. This idea of the captioning is great for everybody in some form. There's been great critical work though by scholars like just to shout out some people, Elizabeth Ellcessor, Greg Downey, Sean Sundeck, Louise Heckman, but also activists like Rikki Poynter, who have highlighted the ways in which captioning so often falls so terribly short and fails so deeply. There's a hashtag on Twitter, #NoMoreCraptions. That's not a curse (!), saying that captions - and this is where I think we get into talking about AI, specifically, automated captioning - the idea that you know, a little bit is better than nothing. Well, not necessarily, when, it's a word salad that's appearing on the screen that is more confusing, more disorienting. That isn't enabling at all. But somebody might feel good by saying, Oh, well, you know, we didn't have the time to do the captioning but here is the automated version of it. And we're never going to go back and actually fix it. But you know, the AI did something for us, or it made me feel good about being inclusive in some manner. So I think captioning is this tool where it works in a lot of ways to add a lot more work to disabled people's, you know, labour in general, whether it's correcting things or creating their own new transcripts. Because captioning is this tool, where those logics of oh, it helps everybody: that’s the logic of universal design. On the one hand, yes, these are amazing tools that do help people in a lot of situations across the board. But when we only centre it around what's cheapest, Oh, if we add captioning, it also makes search capability easier. Which means ads can be targeted more effectively, when it has these sort of commercial capitalistic undertones? Well, then you're really removing the technology from its original source that was much more political and much more defiant in nature to kind of purely turn it into a kind of a marketing tool.
KERRY MACKERETH:
That's really fascinating. And so you've already touched on it in your answer but why do you think it's so hard to fix these kinds of problems?
MERYL ALPER:
So I would say that there's legal dimensions, and there's social dimensions, and there's political dimensions, and none of them are completely separate from one another, they're all intertwined. So really, depending on the country, you know, that you live in there is, you know, there are United Nations framings around rights, there are different World Health Organisation framings around rights, there's all these logics of rights but then the implementation of them differs. So thinking about just the United States not having ratified those frameworks, so the kind of the American exceptionalism, framing in that way applies to thinking about disability and disability access. So even though there are laws that are US-specific that are on the books, like the Americans Disabilities Act, Section 504, those laws are inconsistently enforced or just not really enforced in different contexts, or that legal challenges need to be brought for that enforcement to occur. So you've got, you've got laws that aren't fully enforced. You've also got I think, this culture of and this is really not just about this is truly not just about disability, but about all sort of civil rights movements, this idea that, that that was achieved in the 20th century that we are post this, we fixed it, that we have now kind of come on through the other end. So there's a complacency that exists and that occurs across all levels of education and socialisation which is obviously then centering the white, cis, non-disabled framing of a logic of how history has unfolded, and that certain chapters have been closed. And there are disability specific legacies that are important to think about, I mean, even just kind of dehumanisation around disabled people and their experiences, of disabled people treated as other or less-than-human or as curiosities. And so the ways in which you don't centre their experiences, and a framing of disability - again, this is why it is culturally or nationally specific - but depending on how human services are delivered within the United States seeing disability as something that either needs to make money to be worthy of discussion in the first place, or this burdensome financial drain. So the question of why is it so difficult to fix these problems? In short, ableism.
ELEANOR DRAGE:
You've discussed how the tech industry is mostly working with a deficit model of disability, a model, which often describes non-speaking people as lacking in communication skills. Kerry and I believe that theory from for example, feminist, and anti-racist and disability studies can improve technology products, through situated knowledge is we really believe that this kind of precise, thorough knowledge from these areas of study can do really strong work in industry. So how can theory from critical media studies contribute to our understanding of the relationship between technology and disability, and help create better and more inclusive products?
MERYL ALPER:
Sure. So first, I'll start just by framing this idea of critical media studies. It’s a framing that I've put forth in a recent International Journal of Communication article, but it's very much grounded in a lot of work on thinking about this term access and what it really means. So work, for example, by a scholar, Aimi Hamraie, who talks about access is not something that we should take for granted but as a point of provocation. And they frame this as Critical Access Studies, it's a concept that we can think with or think through. Another scholar who I mentioned earlier, Elizabeth Ellcessor, whose bringing a feminist framing into thinking about access not as this static thing that has been achieved, but more like media accessing, it's this fluid thing that we're - you're never done! There's always updates, there's always things that break, there's always new situations, it's this in progress thing. That of course, can you know that can be in conflict with very practical things like budget items. ‘What do you mean that you know that this is a project that is a never ending thing for us to be paying for or investing in?!’ And that investment part I think, also speaks to another scholar’s work, Tanya Titchkosky who talks about disability as access, access to the human experience. So she asks, do you value disabled people, do you value disability in general? So this framing around critical media access studies just has to do with not taking media access for granted, particularly in relation to disability and its other intersections with aspects of marginality, as it relates to race or ethnicity, class, gender, sexuality, so forth. And I'll give an example of this, but just to clarify too, it’s thinking about - and this is an important industry framing too I think - how you can talk about media access, like access to media and technology, so access to the written word through screen readers for blind and visually impaired people, you know, access to the media, but also mediated access, so access to human communication through media. So access, for example, if you're thinking about events, once we can or maybe do go back to in person events, live transcription at spoken events where usually there's one side, a video stream as well, but the live in person transcription that might exist for people, that is also itself access to communication through media. It's not necessarily accessing the media itself. So thinking about media access in this more holistic manner means thinking about what the other barriers that one's disability in relation to a disabling society occur within, what all these other dimensions of it are. I guess it's to say that it's not always super straightforward. So I'll give just one example of how I came up with this, or how this framing of critical media access studies evolved was, you know, my current book project that I'm working on relates to autism and young people on the autism spectrum, and how it is that we think about what it means to be social with technology, through a group of individuals who are more often than not framed as having a deficit or a lack of social skills. But how do we, from a more grounded approach, understand the social and the technical and the sociotechnical through their actual experiences. And I've been studying kids, because my background is kids. Adults, I should also just straight up say, are very understudied in general, my specialty just happens to be kids. I've been doing this work in very diverse and also very gentrified areas in Los Angeles and in Boston with a lot of income inequality. But there was one mom that I was speaking to, she was Black and she was also low income. And she had an electronic benefits card, that has also been called Food Stamps, and the card that she had also served as a discount card for local cultural spaces, like museums. And I think about museums as definitely highly mediated places, there's, you know, there's video, there's audio, there's a lot of stuff happening there. There's sometimes stuff where you pull up on your phone, and it gives you an audio guide. Anyway, she was saying that there were these days that were special “autism friendly” days that were meant to be these inclusive mornings, that you know, that kids could come. But the actual price for those tickets were more expensive than the discount she got using her EBT card. Or actually, there were certain days of the week that it was, like once a month or so, that were totally free. So that was more accessible to her than the disability framed accessibility day. Because those were the limitations that she was working with. So you can't just have one single working definition, basically, of disability or access, you have to be open to multiple definitions all at once. And this idea of accessibility as this imperfect, that it's never ... there's no pure, perfect version of it ever, that it's always in progress.
ELEANOR DRAGE:
Thank you. That's an extremely important point. You've said that technologies like augmentative and alternative communication don't just convey messages, but also signal particular identities, along with varied meanings of what it means to be a human or a machine. This is such an interesting point. So can you describe what augmentative and alternative communication does and unpack it a little bit for us?
MERYL ALPER:
Sure. So augmentative and alternative communication is for disabled people who, for various reasons, have significant difficulty or are unable to produce embodied oral speech, so talking in the traditional sense. So that can be for younger folks, and as they age, with developmental disabilities, like cerebral palsy or autism or down syndrome, but also one might develop significant difficulty talking because of an acquired disability, like a stroke. And then that can also be a permanent disability or temporary disability. It's another way of looking at disability. But also then there's degenerative disabilities, so something like Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease). So the most famous AAC [Augmentative and Alternative Communication] speaker of all is the late Stephen Hawking. That's sort of the classic example I give of somebody who used AAC, that it was a robotic, computerised voice that spoke. And there's actually a wonderful book by a woman, Hélène Mialet, that is about Hawking from an actor-network theory framing of like, what is Stephen Hawking in relation to all the people that he works with and all the technology that he worked with. But anyway, AAC doesn't just mean technology. It's thinking about - and this is why I'm so drawn to it as a communication scholar - that there's aided and unaided AAC, so Unaided AAC might be gestures, like the kind of stuff that is not talking in the traditional sense. And it does also include American Sign Language in general as a kind of technology in and of itself. But it also does not include, like an object. So aided AAC is the more object-oriented assistive way of communicating. So that can be stuff that has no technology in the high-tech way. So like a letter board: holding up letters for a person to point to, to be able to spell out what they want to say. It could be something low-tech, something battery-powered, where it's just a couple of recorded canned phrases that you press a button and it says them. And then you have these more high-tech versions, and Stephen Hawking's was the most souped up version that exists. But I got really interested for my dissertation and my book Giving Voice about the fact that iPads, these everyday technologies could now or other tablet devices, or mobile devices, could now also do the same thing, and what possibilities opened up, but also what new constraints also exist when you have stuff that's off the shelf, but can also be used in these specialised ways. But also across different purposes. So for talking, but also for playing Angry Birds, all on the same physical object. And there's a lot of players involved in determining what happens to that technology. So the question about identity I think comes into play when it's ‘who gets to decide what this thing sounds like?’ What are the options for how it sounds and who designed those in the first place? So there's really questions of power and identity. And I've written about this in some other spaces too but the roots of these technologies, that the assumption in the initial samples with which synthetic voice has been developed was [that users would be] white men. And so you have a real dearth of voice samples, that sound like anything else, besides that, even just in terms of emotion, that because there are all of these variations on the samples for white men, that this voice can sound happy or sad. And it just makes you think about what roles do white men get to play in Hollywood, that, you know, nobody else gets to play that role with all those kinds of nuances. So it isn't to say, though, that the technology isn’t getting better, that there's not more ways to create these new voices that sound different. But it's also thinking about agency, it doesn't just mean that people are just empowered to make it sound like anything, not to not create something that sounds better or different. And so one example I think from the work that I did was this one family who had been given through, there's a lot of ways in which provision of these assistive technologies can be either you buy it yourself, or the school or the government provides it. So there was this government-provided iPad that had this app that this family was “supposed” to be using with their nonspeaking daughter. But the family preferred - and the family, I should say, were Mexican immigrants, so one parent didn't speak English, and they also had some financial issues too. So they had actually though gone out to one of these, like Costco, or you know, wholesale places, and got a Kindle Fire, so not an expensive iPad, something lower cost, and had found an app that was more open source, so not even that technical, that let you could record sayings and say them back. So they had the older daughter, for her younger sister, record things to say that sounded like family - it was family - that sounded like someone related to them. So now I think there is in the same system that school provided a voice that is sourced from a Latina girl, and then that voice is now generated, but there was something about the moment of creation itself. But then the fact that for the school district, that was not even factoring into their idea of what made this technology good or important. The value was that her humanity basically - and the family's humanity - wasn't recognised because it was just seen as a medical device that was meant to check these boxes of what good communication meant. So to just add a final button on this, there is a documentary, a short film by the nonprofit organisation Communication First, and it's called Listen, and it was produced by and features non-speaking individuals who communicate in various ways. And I think that that's a really important framing and sense of storytelling to put out there, so that what it means to be human or what it means to be a machine, that the complexity and nuance of that is something that these individuals themselves best communicate.
ELEANOR DRAGE:
You're extremely good at having generative conversations that have really productive consequences with people who might not be thinking about assistive technologies at all. And I definitely believe in the importance of what might be seen as small apps alongside big gestures. So small conversations, being patient with people and valuing incremental change. I want to know, how do we go about initiating these conversations and informing practitioners about assistive technologies and why they should pay attention?
MERYL ALPER:
If you think about organisations that for various reasons, maybe don't employ disabled people - and nor should that labour be automatically put on the disabled people in an organisation. But thinking about it, the classroom context and the industry context are very different. But I guess having worked for both massively large industry players and in the classroom I do think there is nothing like a good video or a good short piece of interesting media to get people talking and invested in the meaning of what technology, of what anything really, should be out in the world. So I'm just thinking of a couple of really great short films that I think are really interesting conversational prompts. There's one I remember, it's called Voice by Choice, and it's a short film about speed daters. But everybody in the speed dating scenario are non-speaking individuals who use AAC. And it turns out, they're all using the same robotic voice. And they're discovering it as they're going through this speed dating. A) I think it's important to show disabled people as sexual beings, but also B) it's an interesting play on gender and voice and agency. And I just think it opens up interesting conversations. That's on Vimeo somewhere. But even just more recently on Pixar and Disney Plus there's been two short films, there's one called Loop that is interesting, not only because it's a very high-quality Pixar production, but the character that stars in it is a Black girl and an AAC user. So it’s about the way she communicates with technology, but because it's Pixar, it's also about something bigger than that. And it's also something that was produced by the community itself. So yeah, I think that good stories, and nothing that requires too much prolonged attention, but short, punchy stuff, are important. It’s important to have people or fictional characters as a touchstone, as a schema, for understanding that these things aren't so abstract.
KERRY MACKERETH:
Amazing, thank you so much. We just have one last question. This has been such an interesting conversation. We talked to you previously about assistive technology and one of the issues you raised is that you really want to focus on the history of disabled people as innovators, as technologists, when often disabled people are portrayed as the recipients or the users of technology. Could you tell us a bit more about this?
MERYL ALPER:
Yeah, I think it's something that I take for granted, maybe as somebody who has taken a lot of history courses and who's always looking for the historical angle, but for a lot of folks in engineering or computer science departments no education is required, you know, no coursework in the history of technology or computing at all, let alone the history of disabled people as technologists in computing. And I think that’s [the case] because it's not what the market incentivizes; the market incentivizes the production of new things or “innovative” things, and that often [results in] a pressure to look forward and not look behind. That the past doesn't fit, we don't want to be associated with it, we only want to be associated with these kinds of future-oriented - or at least the grants that are funding research are asking people to write in that way. But I think that when you are training not just the next generation of technologists but people who, for whatever good intentions they have, want to build things that are useful or helpful or interesting and can be used by a disabled audience, it's really important for them to come out of those experiences, not just people who see disabled people as the recipients of assistive technology. And maybe a step up from that is seeing them as participants in the design or you know, the development of assistive technologies. But truly, I would say that if you're teaching the history of technology in general, to not mention the role that disabled people have played in that general mainstream history does a disservice to your students as well as to disabled people as well. So I'm thinking of the fact that Helen Keller, for example, is part of the history of haptics, that hearing aids are part of the history of battery miniaturisation and handheld portable technologies; that disabled people are central to the history of computer hacking, and it's sort of ancillary technology, phone phreaking. And that really spurred a lot of Silicon Valley development in these various ways. And, you know, and other scholars to point to who've done this work are folks like Mara Mills, Jonathan Sterne, Bess Williams, and Jai Virdi, and this work [shows how] it's important not just to look in this sort of charity lens, or saying that these folks were beneficiaries, or even to siloe their innovations in this way, but to say that disability is important, because you want to do good work that is cognizant of how we got here, and you can't talk about how we got here without the contributions of disabled people in - and again, I always want to say it's not separate, just as we talk about the history, the contributions of women, the contributions of indigenous or Black individuals and obviously the intersections of those things, that you're not doing good history or good reflective work on technology without talking about those things.
ELEANOR DRAGE:
Thank you. It was a real pleasure to speak with you. And on the topic of the documentaries and films, there's a fantastic film called Yes, we fuck! which is directed by Antonio Centeno and Raúl de la Morena, documentary makers from Spain, and it's about six people with functional diversity who tell their stories about sex and how it belongs to everyone, and it's just brilliant, I highly recommend it. So thank you so much for coming and speaking with us today.
MERYL ALPER:
It's been a pleasure.
ELEANOR DRAGE:
This episode was made possible thanks to our generous funder, Christina Gaw. It was written and produce by Dr Eleanor Drage and Dr Kerry Mackereth, and edited by Laura Samulionyte.