Digital Frictions Captioned
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Remi Yergeau: [00:00:00] I'm happy to introduce our next panel, which is digital frictions. And it's a roundtable discussion with David Adelman, Aimi Hamraie, Mara Mills, and J Virdi. Jeff Nagy had to send his regrets. He had a family emergency. 

So I'm just going to start really quick by reattending to accessibility and the space that we're in. So we have both speakers and attendees who are present in person as well as on Zoom with us here this morning. So we'd like you to please come to today's session as you are. And feel free to enter or exit the space as you need to. And you can access CART or real time captioning if you're in Zoom by clicking the CC button at the bottom of the Zoom menu. And for those in the room, you can access CART either through the screen in the room or there is a [00:01:00] URL on the slide right now if you'd like to look at captions on your browser. It's streamtext. net slash player question mark event equal sign dot. DISCO. And DISCO is in all caps and during the discussion later, those of you on zoom can enter your questions in the Q&A feature of the platform.

We also invite you to experience this event in whatever ways bring you most comfort. Echoing Ellie's introduction at the start. Feel free to inhabit your space as you wish. If you're here in person, please feel free to stand or stretch or stem or move about. And then also in the name of sensory access, we ask that those in the room flap instead of clapping. So that just involves raising your hand, twinkling your fingers, and maybe we can practice it for a moment. Awesome. And if anybody accidentally claps, that's totally okay. This is a no shame zone. 

So I'm going to now give some very [00:02:00] quick two sentence introductions to each of the folks on our panel. And I should note that we're structuring the panel as a discussion. So we have a series of question, and then each person is going to respond, taking a couple of minutes to reflect on that question. And we'll go in alphabetical order, and I can remind people. So that would be David, Aimi, Mara, and J would be the order there.

So to start, David Adelman, he/him/his, holds a PhD in Arts, Technology, and Emerging Communication from the University of Texas at Dallas, and is a postdoctoral research fellow in the Digital Accessible Futures Lab at the University of Michigan. His research interests center disability and crip studies, with a particular emphasis on disability media studies. Digital Disability Cultures, Disability Film Studies, and Critical Sexuality Studies. [00:03:00] 

Aimi Hamraie, they/them, is Associate Professor of Medicine, Health, and Society, and American Studies at Vanderbilt University, and Director of the Critical Design Lab. They are author of Building Access, Universal Design, and the Politics of Disability, a public member of the U. S. Access Board. And a United States artists fellow in media. 

Mara Mills is associate professor of media culture and communication at New York University and co founding director of the NYU Center for Disability Studies. She is recently co editor of Crip Authorship: disability as method from NYU 2023, a special issue of Osiris on disability and the history of science, and the forthcoming how to be disabled in a pandemic.[00:04:00] 

And then J Virdi, shshe/hersis an associate professor in the Department of History at the University of Delaware whose research focuses on the ways medicine and technology impact the lived experiences of disabled people. She is author of Hearing Happiness, Deafness Cures in History from University of Chicago Press 2020, and has published articles on diagnostic technologies, audiometry, hearing aids, and deaf culture, and on disability accessibility.

All right, so let's move to our discussion. So we're going to start by asking the panelists to reflect a little bit and share about a project you're currently working on. Or are feeling particularly excited about and I will turn it to David.

David Adelman: Excellent. First can everyone hear me excellent And I just [00:05:00] want to take 30 seconds and acknowledge that I am very grateful to be on this panel today with a bunch of rock stars. And I'm looking forward to the discussion, and thank you very much for having me.

So just generally, my research is very much located in the question, at the intersection of disability, desire, and visual culture. And we can perhaps talk at length what those contested and sticky terms mean, but for me a project that I'm currently working on is I'm looking at various sexual cultures around devoteeism online. And for those of you who do not know, devoteeism refers to the cultures that we sometimes encounter online on various sites. It's usually social media directed towards people with disabilities who are open to erotic and or [00:06:00] sexual relationships with typically able bodied individuals who find disability erotic. Although not necessarily able bodied, you can have disabled relationships, but I'm particularly interested in the ways that sexual desire becomes a way to understand disability, the physical embodiment of disability as desirable, but also the sort of conceptual and theory of mind of disability as desirable in and of itself.

And hopefully I haven't gone over three minutes but thank you very much. 

Remi Yergeau: Thanks, David. This is Remi speaking. Aimi, I believe you have a slide next, so hopefully I have just advanced it to the correct slide. 

Aimi Hamraie: Thank you. This is Aimi speaking, and I want to reiterate the thanks to everyone who put this event together and for having me here remotely.

A project that I'm working on right now with my [00:07:00] collaborators in the critical design lab, which is a lab of disabled designers and researchers is the remote access archive, and What we're doing is documenting ways that disabled people and communities have used technology for remote forms of participation, both during the ongoing COVID 19 pandemic, but also before that for about a hundred years.

And so we crowdsourced oral histories and documents and different archival materials from broad disability communities. And we're currently in the process of creating a an accessible digital free to use archive that will be on a website. It'll have plain language and ASL and searchable materials.

And the goal is to have representation of a broad range of disability communities. And one thing I'll just say about this project, which is part of what is really exciting to me about it is that the [00:08:00] team of people working on it is also all disabled people. And so we have navigated our access needs by working remotely on an archive about remote access. And so that has given us a lot of opportunities to think about our subject material as well. 

Remi Yergeau: So I'll send it back to you, Remi. Thanks, Aimi, and I believe Mara. I think this is your slide next.

Mara Mills: Yeah, is this on? Yeah, great. It's great to go after Aimi, I have to say, and also to be on this panel with so many people I admire and have been working with over the last few years. And so the project that I want to mention and discuss on this particular panel follows really well from Aimi's, although I have to say it's unfortunately more on the pessimism than on the optimism side.

So I've been working on a project over the past four years with a group of [00:09:00] about 20 people, which will turn into an edited collection documenting the experiences of disabled New Yorkers during the pandemic. The slide shows an image of the edited book, How to be Disabled in a Pandemic, coming out from NYU Press in February. The title, of course, is a citation of Douglas Crimp's 1987, How to Have Promiscuity in an Epidemic. The cover is black with a blue mask in the center, carrying the title in red lettering. This is an artwork created by the Brothers Sick, and the chapters of the book are written by disability activists, academics, librarians, journalists, and artists who stayed in New York, lived in New York throughout the first four years of the pandemic, ongoing pandemic chronicling the impact of the virus, but more so the impact of city policies and class and racial inequalities in New York, prisons, migrant detention centers, Chinatown, senior centers, hospitals in the Bronx, [00:10:00] subways, housing shelters, social media, and beyond, and next slide, Remi. 

My chapter for the book, which focuses on digital technology, which is more relevant to this panel looks at the development of the New York State Ventilator Allocation Guidelines between 2006 and 2015. So the digital technologies I've been working on are biomedical devices, as well as the increasingly automated algorithms used in hospital settings to allocate those devices. I've been, it's like nested digital technologies used to ration other digital life saving technologies, and I'll just say New York was one of the first states, if not the first state to come up with a plan for allotting ventilators in 2006, and it ended up shaping crisis standards of care across the U. S. It recommended the use of SOFA scoring sequential organ failure assessment to deprioritize people with a [00:11:00] higher likelihood of short term mortality, and during the pandemic, SOFA scoring has received tons of pushback from bioethicists, disability activists, and others for the ableist and racial biases it encodes.

So I've been doing interviews and working in the DOH archives to try to understand the making of those guidelines and how they disseminated and became entrenched, and whether there might be disability justice versions of technology rationing, or in a more positive way allocation. And I'll just say this is a slide of activist Stacey Park Milburn presenting at the California Care Rationing Coalition on May 6, 2020. She was a Korean American queer disability activist. She's lying on her side in bed in the photo, and her ventilator is visible, as is a handwritten sign that says, equitable health care for all.

Jaipreet Virdi: Thank you so much. This is J [00:12:00] speaking. I'm a South Asian woman with short curly black hair. I want to also echo my thanks for this panel, to Remi for inviting me to speak, and to all of you joining here. It's been quite an experience engaging with different disciplines because I usually get stuck in my little bubble as a historian here.

I don't have a slide because I forgot to add one for this, but I'm really excited about the new project I'm working on now, which is titled Deaf Futurity. And it comes up some questions that, I was struggling with my first book, titled Hearing Happiness. And Hearing Happiness is a book largely about how deafness started to embody expectations for a cure and what it meant to be an ideal American citizen and how assimilating into hearing society was one of the mandates for a deaf person to live in American society. And the last chapter of the book really talks about [00:13:00] the advertising agencies that promoted hearing aids and how many of these advertisements embodied certain expectations for gendered performances, what it meant to be an ideal deaf hearing family, who could wear a hearing aid and to perform certain expectations for their gender like, a mother who's taking care of her children or cooking and being a devoted housewife.

But one of the major struggles I had with this book was working with the corporate archives of hearing aid industries. Race was definitely left out in many different ways. And despite the post World War, we're starting to see increasingly, increasing numbers of different ethnic groups, different racial groups. None of these groups were being targeted by hearing aid advertisers. Or even considered to be worthy consumers by the hearing aid industry. 

This is not to say, however, that these people were not wearing hearing aids. Of course they were. They were still buying it but [00:14:00] they weren't being recorded and they certainly weren't being reflected in the corporate advertisements and in the corporate archives.

So these questions led me to wonder, how were deaf people in, incorporating ideas about race and identity in their hearing aid devices. And this project comes out of that, and now I'm thinking in terms of what Stephanie said in the first panel about dangling the carrot, and we're really thinking about future as now and what that means. And that's such an interesting way for me to also work through some of the ways in which deaf users of hearing aids, as well as deaf innovators, incorporating design into their new ideas about what it meant to be deaf. Be in the future by living there now, so I'll speak more about that because it's more related to the next question

Remi Yergeau: Awesome, and this is Remi speaking again, and so we're moving on to another question. And so we'll start with David again. And the question [00:15:00] is how did you come to do work in disability studies in critical access studies? And how do questions concerning technology or the digital animate your work?

David Adelman: Excellent. I've switched mics so can people still hear me? Excellent. There is a simple answer to this and there is a more complex answer to this. So the simple answer is that I came to disability studies from a humanities background. My bachelor's is in English language and literature and my master's is in media arts. And then I combined the two with the Ph. D. And so I have a lived experience as a person with a disability. 

And so part of me doing this kind of work is writing myself into the record, however narcissistic that may sound. I believe it is Derrida who says that all theory is autobiographical. And I [00:16:00] certainly ascribe to that. 

But at the point, on the larger level the things and the kinds of questions that animate my interest in technology are not necessarily autobiographical, high technological products, or rather I think as many of us know from our research and work that historically access to technology for people with disabilities is a very fragile and difficult thing.

And so when I think about the technologies that I'm interested in, whether we're talking about catheters or leg bags or power wheelchairs or urinals, all things that I have written about, but all things that are ubiquitous technology, things that are taken to be commonsensical. Things that we are not necessarily futuristic or stylish or wonderful. And but, nevertheless, they are technological. 

And importantly, as [00:17:00] I think we all will agree here, that it is incredibly important to imagine disabled people. as designers of technology and of the everyday. And yes, I'm quoting people on this panel as well. And so it's a pinch me moment. But ultimately the the point here for me as a theorist and as a pedagogue and as someone who is disabled, I am very much invested in thinking about disability, culture, and technology together because those things must be thought of together because technology and culture cannot be separated, should not be separated, and it is only by looking at those things in conjunction, those concepts, those dreams, those registers that we can begin to have complex and messy and sticky discussions that are nevertheless necessary for imagining a future that includes [00:18:00] disabled people. Thank you. 

Remi Yergeau: Thanks, David. And this is Remi speaking again. Aimi, I believe your slide is now showing. 

Aimi Hamraie: Thank you. I'll say you talk about my book building access, which came out in 2017. I'm showing the cover of the book here, which is a graphic from an architectural handbook that shows two wheelchair users as line drawings, extending their arms into space. And it's annotated by various numbers, indicating how much space they're taking up. 

And the way that I came to disability studies, was through the humanities, but with an interest in materiality and the built environment. And I was studying the phenomenon of universal design and trying to understand some contradictions that were inherent to it. And one of those things was [00:19:00] that in disability studies, we tend to talk about access as the opposite of biomedical models of disability. But in fact, access relies on biomedical knowledge about disability.

And I was trying to reconcile these two things. And the framework that was really helpful for me in reconciling those things was critical access studies. And this is building on the work of people like Remi Yergeau and Margaret Price and others, Jay Dolmage, and Tanya Tichkoski. And the question that I was really asking in this book was that when we say we're designing for disabled users or all users, who really counts in those categories and how do designers know?

And so the reason why this intersects with questions of the digital and technology, which are on a different scale than architecture in the built environment is that. Fundamentally, the built world is produced through both knowing and [00:20:00] making, and one of the arguments that I make in this book is that disabled people have engaged in oppositional and anti assimilationist forms of knowing and making to make the built environment otherwise, to construct architecture and streets and technologies and ways that non disabled designers and engineers do not tend to do.

And so I coined the term criptechnoscience in this book to describe activist modes of vernacular making and designing. And then I also talk about epistemic activism, which is the ways that knowledge production coheres around designing technology and built forms that may not manifest in it directly.

And so this is things like the stuff that people do to do activist research or activist teaching as a way to transform their disciplines. And so this is also a prehistory of disability studies and a prehistory of STDs. All right, [00:21:00] I'll pass it back to you. 

Mara Mills: Thanks. If you haven't read that book, that's such a fantastic book.

My PhD is in history of science. I started that PhD in the early 2000s not long after Catherine Ott, David Serlin, and Stephen Mim published an edited book called Artificial Parts Practical Lives, which began waking the history of technology up. It was a very conservative field of history at that time.

Two insights from disability history and literary disability studies that had already been around for a long time. I also grew up in a family with diagnoses that constellated around epilepsy and neurodivergence. And after the 2013 DSM revision, many of us suddenly had a new diagnosis of autism, myself included.

Between my Ph. D. with its training in historical epistemology and my changing diagnoses in my life, I've done a lot of work on the history of technologies that [00:22:00] define disability, that, that make and remake disability. So I've written a lot on the history of standards a lot on the history of testing protocols. And then several articles also on the history of assistive tech. Usually more like electronic tech, algorithmic bias in the design of technologies like cochlear implants, also distributive justice and their availability around the world. A little shout out to Michelle Friedner, who was here two days ago, we just gave a talk at another conference here at Michigan on cochlear implants and bias in their availability, as well as their elect their like speech processing.

So recently, in addition to the work on ventilator allocation protocols, I've been working on the history of the concept of impairment and its relation to the which was unexpected to me to the very like the birth of the computing industry. And asking myself, why has impairment been so good to compute with?

I gave a talk at Michigan in December on this topic. Dan [00:23:00] Buch and I, he's a life insurance historian, have an article coming out next month on this. But impairment as a term in English was created by life insurance companies in the first two decades of the 20th century as a tool for predicting mortality and hence expenses, payouts for those companies. So it turns out that Hollerith's, Herman Hollerith's Punch Card Computing, his company was essential to calculating population based risks of death from certain impairments. 

And on the flip side, impairment was one of the very first proving grounds for Punch Card Computing, along with the census. And impairment was big data. It's still big data. Dan and I do a bit of thinking in that article about the long standing problem of imagining impairment to be digital. Why do we think of impairment as discrete, as codable, and tied to money, or financialized? And so this slide has a reproduction of a [00:24:00] 1912 Hollerith punch card with columns for impairments that was used by insurance companies to tally the death rates of clients and then correlate them to things like diabetes, epilepsy, and other factors. 

Jaipreet Virdi: This is J speaking. Up on the slide it's the idea of crip futurity where I draw on to the work of people like Alison Kafer and British philosopher Stuart Murray to think about collective knowledge in which disability and diversity are central for shaping the future and the idea of imagined possibilities, and how any kind of technological innovation that we make requires including disabled perspective.

These frameworks actually are so far removed from my training as a PhD student, where I came in first as a philo a student of philosophy of science, and then transferred over to being a historian of science, technology, and medicine. [00:25:00] And I was really much looking at the history of ear surgery and all the kinds of medical diagnosis that frame that discipline. But quite frankly, it was reading about deaf history, like the works of Susan Birch and actually Mara's, especially, and the artificial part, artificial, Artificial Particle Live Books that Mara just mentioned that really helped me to think about how disabled perspectives are crucial for understanding the lived experiences of disability.

And I confess this was something that I feel like I should have already been known because I'm a deaf person who wears hearing aids. But I spent so much of my life trying to pass in hearing that my experiences of deafness were very much muddled. But, my history is essentially that by the time I was making the shift from wearing analog hearing aids to digital hearing aids, my entire auditory world view shifted. And that opened up new ways for thinking about access, thinking about critical disability [00:26:00] studies, and thinking about what it means to be a disabled person living in an ableist society. Reading about the work of scholars in critical disability studies also helped me to think about what it means to work with technology, both in a actual space and in virtual spaces.

Next slide, please. And this also comes from my training as an historian of technology who works with material culture. As I said, the big question in Hearing Happiness was why was race or other different kinds of users not included in the advertising campaign for hearing aid products. After the Second World War, we see a tremendous boom in design of hearing aids, where color, style, aesthetics, different kinds of shapes were all created as a way to appeal to the consumer, to their preferences, to their ideas about design, or even their own personal tastes.

Next slide, please. But then when hearing aids shifted from being worn [00:27:00] on the body to worn completely in the ear. We essentially have not just the miniaturization of the technology as Murr writes about, but also the standardization of design, where all hearing aids essentially have shifted from being of this colorful, aesthetic impulse to this, what they call the skin color, very specific skin color product.

Or, as in 2018 2008 devices that embody this kind of futuristic, sleek, and trustful design. But essentially, they're all about embodying this 1940s advertisement year, where we see a white woman, her head turned, and the hearing aid is in her ear, and the caption says, yes, that's all there is. And that's the message that's being carried forward to the 21st century.

Next slide, please. However, when I look online to see how deaf users are talking about the hearing aids, it's a completely different message. Many of them are talking about they're tinkering or [00:28:00] hacking their products adding jewelry, adding different kinds of construction features. Some of them are even buying, from Etsy, for example, stickers, some of which are also sold by hearing aid companies to personalize the hearing aid. And this is a quote from a user on Twitter who watched the Miss Universe pageant and saw Miss Philippines wearing this kind of ear cuff and realized that they wanted that ear cuff too, but wanted to make sure that it fit with the hearing aid. So they made it by hand and attached a star charm to the hearing aid tube and it's like really proud of this little guy. And what we see here is the blue stickered hearing aid piece that goes behind the ear with a tiny star attached to the tube, and this kind of cardboard starburst that's coming out of the hearing aid. And a different kind of version also sold on Etsy, a pattern that disabled people, deaf users, can actually follow and make their own modification for the hearing aid.

Next [00:29:00] slide, please. In contrast, we also see this kind of more extreme artistic approaches to hearing aid design. All of which, most of them are very much the prototypes.

We have partnerships with hearing aid companies, like Lauren Regolini worked with Telehon Speech and Hearing to create an essentially a fashion show to show what good hearing aids could actually look like. Chella Man, who is a transgender, queer deaf person who wears a cochlear implant, worked with Private Policy, which is a genderless fashion company, which is a genderless fashion company to create a one of a kind ear jewel that you wear on top of your hearing aid or cochlear implant. They're ridiculously expensive. They sold out before I could even buy one. And they're the idea behind that is to draw attention to the deaf net, to not to move away from ideas of stigma and shame.

Finnish company DeafMetal, add the Drew pieces to the hearing aid, but they [00:30:00] mostly marketed only through Instagram and their online website and go the Instagram account for deaf metal. You see a huge range of customers all showcasing how they not only buy these products, but adapt it for their own purposes, including adding like hair and jewelry to the earpieces there. And recently, there is a new company from, by French designers Kate Frichard and Margot Grangeon called Paired, where they embodied a new way for reconceptualizing what a hearing aid could actually look like. Just like with Chella Man and Private Policy's collaborator, and there's a long waiting list for these products, and they're not just a cover for the hearing aid. 

What they're trying to do is trying to work with hearing aid companies to completely redesign what a hearing aid is supposed to look like. The irony about all of these products is that as beautiful they are they appeal to a very specific subset of consumers. They're not universal in a sense, but they're [00:31:00] also not always realistic either. So you cannot just go to a shop and buy this. They exist very much in a digital space, where you have to know where they are in order to understand how you can get them, if you want them, that is. And I'm gonna stop here for now.

Remi Yergeau: Thanks J, and our next question is, what is friction, which is the title of this panel? How do you understand friction in relation to power, community, and identity? 

David Adelman: This is one of the questions that animate my research very much. The first panel spent a lot of time talking about the place of joy, and I would also expand that and say play and pleasure, right? And so much of my research for my dissertation, which I'm actively working on turning into a book project is very much examining the rise of desirable disability online and that discourse in the [00:32:00] past 10 to 20 years. And specifically, like historically, we understand the turn to desirable disability as a remediation and a resistant tactic to a biomedical frame of understanding disability is something that needs to be fixed or cured.

And so that is there's been lots written about that, and a lot of people continue to write about that, and that is a very distinct turn, right? But at the same time, as we acknowledge that the turn to desire and pleasure and play can be a resistant tactic that is in opposition to something, the other secondary question that is a virgin for me, is thinking about where the place of joy is for this.

Which is to say there is a difference between pleasure as a resistant tactic and pleasure for pleasure's sake. And thinking here, in thinking [00:33:00] about Adrienne Marie Brown and pleasure activism and thinking about the ways in which people, and specifically disabled people, create livable worlds of knowledge and practice and play in thinking about this. And the reality and the friction for me comes from the fact that these two concepts are always already in relation, right? 

But the question of which register comes to the fore, shifts across context and across communities. So pleasure and practice on Twitter, for example, is going to look very different from pleasure and practice on a Listserv that is designed for medical diagnostic discourse and things of that nature. But, all of these registers are always already happening at the same time. And by attending to those registers, we can begin to, not necessarily disentangle, but to [00:34:00] understand the ideologies that exist, work, undergird these formations and these concepts because the reality is that we are always responding to the larger ideological messages about disability.

And those responses are what motivate me to think and to work with.

Remi Yergeau: Thanks, David. And this is Remi speaking. Aimi, I think we've got your slide up next. 

Aimi Hamraie: So I think of as both a material texture and as a material metaphor. And I I have a sort of textural synesthesia. So I tend to use the concept of texture a lot in my writing to talk about politics. And in disability studies and in our like U. S. context more generally, there's a sort of textural association of [00:35:00] rights with smoothness and belonging. And there's this idea that if you put a ramp on a building, then someone will easily be able to transition from point A to point B and get into the building. And that's the end of the story.

And the technology of the urban environment that's often used as a metaphor to describe this idea is the curb cut, which is a type of ramp that goes from a sidewalk to a street. And on this slide, I'm showing three images. The first one shows a wheelchair perched on the edge of a curb not able to go into the street. The curb cut is often used as a material metaphor for universal design. And that smooth idea of inclusion that I was talking about and there are concepts that are imported into other fields, like in technology, there's the the digital curb cut and the curb cut in general is used as a metaphor for the idea that if [00:36:00] something is made for disabled people, it makes everything more accessible for everyone, disabled or non disabled. 

But I retell this history and so do a couple of other people in disability studies, including Robert McRuer and Sarah Hendren and Catherine Ott. The history of the curb cut is not a history of smooth textures. It's actually a history of friction. And in the National Museum of American history, there's actually a chunk of a curb cut in the permanent collection or a chunk of a curb in the permanent collection that disability activists smashed with sledgehammers and then replaced with a curb cut.

And so inherent to that history and the idea of the curb cut is the idea of disabled people destroying and remaking some aspect of the world. On the right is a curb cut as we would often encounter them in the built environment, which is this kind of tactile [00:37:00] paved surface with bumps. Sometimes they're yellow. This one is pink. And this is also a technology that is born from histories of friction because it's when wheelchair and power chair users first started to introduce curb cuts in Berkeley in the 1970s, it actually created access barriers for blind people because there wasn't a way to know when someone was about to walk out into the street.

So it was a safety issue. And this could have been like an incompatible. Incommensurable access need issue, but they, the two disability groups work together in the context of the Center for Independent Living and they designed what is now called tactile paving, which is actually a friction surface that not only signals the change in elevation, but actually is helpful for getting up the curb.

And so I use this to talk about how friction is actually like a feature. Of disability politics and that the curb cut itself is better [00:38:00] understood as a technology of friction rather than of smooth belonging, because it tells us something about cross disability solidarity as part of our history.

And if we can go to the next slide and this is just a photo of the protesters smashing that sidewalk. So there's a group of wheelchair users gathered. They have sledgehammers. They're breaking up the concrete. And to me, this is one of the friction textures of crip anti assimilationist politics.

And one person is holding a sign that says we demand curb cuts.

Mara Mills: Yeah. And friction, I would say is probably the mildest way to describe the debates that I've been researching in my project on ventilators as scarce digital technologies. What does it mean to have a scarcity of something digital or computerized? Who lives? These debates have been, like, [00:39:00] very, really intense.

So the New York State guidelines that then influenced many other states, they actually protected the ventilators of existing chronic users, which was misunderstood in some of the popular press. But they did suggest that people's backup ventilators should be reallocated during a pandemic, and that anyone in an acute setting who needed a ventilator would be subject to SOFA scoring. Meaning that if you entered an emergency room with your own ventilator, it could be taken from you, from that SOFA protocol. So there was an immediate sense among disability activists that this was ableist. 

But doing research on this topic, yes it was ableist, but there's ableism and racial ableism in ventilator allocation that's like much more insidious and pervasive than I thought at first. Many people thought, look, let's just stockpile, let's just create lots more ventilators, stockpile them and that will solve the problem. Unfortunately that isn't possible. [00:40:00] Ventilators aren't just devices. There are these elaborate socio technical systems. Oxygen itself is a scarce resource, and the oxygen supply chain is not instantaneous. You can't just have tons of ventilators. The tubing degrades over time, so it can't be stockpiled. 

But most importantly, ventilators aren't, they require a lot of maintenance and nurse and health care labor, and it's really the labor issue, the digital labor of the health care workers that is the scarce resource and essentially, wealth disparities often linked in a particular region to zip code and race means that there's an enormous amount of inequality between individual hospitals on all of these counts, labor, oxygen and hardware. So what seems like a like individual rights issue about someone's own ventilator is actually part of this huge network of supplies and labor in a given region. 

So I was able to get the transcripts of recorded meetings [00:41:00] of the three dozen clinical experts who met in 2006 to draft the first draft of these guidelines that became so influential. These were like ethicist lawyers, religious leaders and doctors and the health care providers who were working at so called like underserved hospitals, often people of color themselves, repeated the repeatedly made the point that patients in their communities had been debilitated by poverty and social inequality. They did not often identify as disabled, they weren't necessarily part of a disability rights movement, but medically they were considered to have impairments and pre existing conditions, making them likely to be hardest hit by a pandemic, and in our book we have this sort of zip code map of deaths in New York and indeed certain neighborhoods, poor neighborhoods where people of color live is where the greatest number of deaths did take place.

And these are people who were often written off by the popular press for their comorbidities. So in terms of friction, [00:42:00] what surprised me and what I'm still working on is that there was a sense that wealthy Identity based disability rights and activist groups actually had more resources than debilitated residents of certain neighborhoods.

And that allocation guidelines were necessary for equity in a city in crisis conditions where oxygen and labor was going to be rooted between different neighborhoods. So on this slide I just pasted a few comments from the debates in, that were in this 2006 transcript. I'll just read one of them which is, this one doctor in the Bronx was saying, look, community participation doesn't always increase justice because some people are much more organized. Specific disease group advocates are in fact extremely well organized, much more so than the vulnerable poor. I hate the word vulnerable, but let me just that's what he said. So that's just a flag. The fairness of that and intense friction, intense debates among people making these guidelines, which seemed like [00:43:00] unanimous that there was like a consensus on the guidelines.

But in fact, there was a ton of friction in making them. And a lot of friction about who's disabled, what does it mean to be disabled, and who gets a ventilator.

Jaipreet Virdi: I think of veteran in this example, the history of closed captioning. In which you have a community based protest to meet the needs of a specific user group. In this case, the history of captioning especially as we see it on television now, Closed captioning emerged in television when the deaf community, largely in New York, started protesting CBC and ABC to include mandatory captioning for all of their television programs, not just select programs.

And this history is a history of protests of the need to adapt for the needs of deaf people. But what's interesting, I think, in this emergence of friction is that, as Aimi mentioned, it's not necessarily the ideal of the television. Where [00:44:00] we can see in the history of captioning, in that, that people protested, the television ex executive accepted their claim, and then we see captioning everywhere.

That's not what happened. The challenge of captioning, especially accurate captioning, is still something that is ongoing, including the need to have access. To that captioning and the cost of the youth. You can remember early on the COVID Pandemic when we all shifted to zoom and there was this huge delay in access for some time in which require people to think about how we can create inclusive spaces online and what that would look like many members of the deaf community for instance were arguing for captioning or doing for all tech descriptions as were members of the broader disability community.

Yet, even when people were circulating online instructions for how to create accessible spaces, how to make sure we embody all aspects of inclusive digital practices, there were so many instances when, [00:45:00] for example, I would attend a public event and I photograph on the bottom corner here. This is a screenshot from a Zoom webinar where it is literally me saying, hello, could the host please enable caption? Something that I have found myself saying over and over again in almost every public webinar. 

And it seems like despite all the instructions about how we can create inclusive digital spaces, there's still a learning process. There's still a process of ensuring that transference of our expectations of how we behave online, how we ensure that our audience is included. Okay. To require some time of learning. 

Next slide, please. But the process still required users themselves to figure out how to adapt to these spaces. This is a photograph of an event that I was participating in where we see three different screens. The screen in which the actual PowerPoint presentation is playing, another laptop that has card [00:46:00] capture, and then an iPad that has auto AI capture.

And what you don't see because it is being used to take these photos, also my phone had another phone capture. It was very frequent that at one time or another, in almost every single Zoom webinar, something is going to fail. This elaborate contraption added hours to my time. It added me to ensure I understood what was going on and also how I can think about the ways in which technological assets would work with my hearing aid and would work for me to understand or participate in the digital spaces.

And next slide, please. But this is not something that emerged just during the pandemic here. Ricky Poitner, who is an online deaf activist and YouTuber, has long been advocating for what he called the No More Craptions Movement, that we should not accept the bare minimum for either A standard captioner type of access or AI caption at the [00:47:00] bare minimum, in which we just accept all the mistakes and the misspelling, or leave out certain kind of words in language. We don't always describe the situation in which sound is being used to embody an emotion or feel. 

Next slide, please. And I'm also drawing on this idea of friction from an article by Cheryl Green, where she writes in, this is in the Canadian Journal for Disability Studies from 2021, where she emphasized that accessibility, even if it is not part of an aesthetic practice or an aesthetic, can still be part of the art. And here I'm thinking of deaf artist Kristen Sundkamp Next slide, please, who had this really beautiful video that you can watch on YouTube where we watch captions being used almost in a way to describe the space, describe the sensation. Or just a clip from a miscaptioned video where the caption says, Spider Barking.

And, [00:48:00] spiders don't bark. Just in case I need a clarification. But how messages about caption in the digital spaces can actually be necessary for conveying a specific kind of understanding and how important that is to be clarified. So that's how I'm thinking through featuring here.

Remi Yergeau: And this is Remi speaking again and with a quick question for panelists. So we have about 20 minutes left in our session and one last question. I might suggest maybe we think of this as a lightning round response to this question, which we can then use to open up broader discussion with folks, if that sounds okay with everyone?

Awesome. The last question for our lightning round discussion is, what are some of the most pressing issues at the intersection of social justice and technology right now? And how do you see conversations from the past informing conversations right now? 

David Adelman: Rather selfishly because of my background and current interests, right?

[00:49:00] One of the things that I have observed and that I write about extensively is this sort of emergent movement around network technologies and gig employment for disabled individuals, right? And so often this can take up the guise of looking at libidinal economies on things like OnlyFans, JustForFans, or a number of other kinds of social network sites where individuals who are chronically underemployed use their body or use common examples of desire in order to economize or financialize their income.

And although this is not the only form that this takes, often we also see this in online zines and craft cultures around disability. The idea that, In order to maintain access to healthcare and support, disabled people cannot receive [00:50:00] more than a certain amount of state mandated income. And so we often see the strategic use of substandard or sporadic employment that allows them to contribute and be productive to society. But in such a way as to not jeopardize access to healthcare because again, and this is something that I will continually harp on, Medicaid is the only insurance in the United States at least, we're talking about the US context, that provides ongoing in home health care. And lots of people don't realize that because of the income limits that are stipulated by Medicaid. That means that disabled people will remain in poverty. 

And so this is an ongoing issue and incredibly pressing. And there are multiple activist movements to work through policy and [00:51:00] legislation too. But for me, that is the most pressing point because you cannot have change without money in our society.

Remi Yergeau: Thanks, David. And Aimi, did you have a slide next at all?

Aimi Hamraie: I didn't put a slide for this one but I'll just say the pandemic is ongoing and it still affects a lot of people. There are tons of people who are being disabled by long COVID and our world and technologies are not keeping up with that.

In fact, like many of us have just been abandoned by the state and public health institutions and left to fend for ourselves. But there are some things that if we were to think of them as access technologies could be a broad benefit like changing our building codes to have improved ventilation is like super low hanging fruit that would really affect the lives of a lot of people make it possible to [00:52:00] participate in things.

But we are seeing, in my opinion, the opposite of a response to long COVID than there was the response to the polio epidemic in the 1940s and 50s. Back then, the fact that so many people were becoming disabled actually spurred the emergence of the first COVID 19 vaccines, disability access guidelines for physical disability.

And we're not really seeing so much of that. Now we are getting more of like an effort to just forget that the pandemic happened and to move on from it, but given that it is ongoing and continues to affect so many people's lives and put people in danger. I think it's worthwhile for us to continue talking about technology at this intersection and to also forge other solidarities because of course COVID also disproportionately impacts disabled communities of color.

Mara Mills: [00:53:00] Yeah, and I one of the things I think is urgent in related to scarce digital devices, biomedical digital devices, is having a disability theory of distributive justice. A theory of distributive justice that's not coming out of traditional ethics or bioethics, but out of the disability justice movement, which needs to move beyond, it claims to not be individual rights based, but it actually needs to move a few steps further to really be thinking about statewide distribution, for instance, of supplies. 

So we've done, we've done a great job of analyzing, critiquing and changing bias at certain points in the algorithms that distribute these devices. So like Dorothy Roberts and her colleagues have highlighted the racial bias in creatinine measures that are part of the SOFA scoring. And that certain states like Massachusetts have then got have changed or differently weighted that little teeny component, we've had DREDF, a disability [00:54:00] legal group point out that the Glasgow Coma Scale, also part of the SOFA scoring automated algorithm that helps hospitals distribute not ventilators that disadvantages people with speech and motor impairments.

So we've done that piece, but the question is how do things get distributed in conditions of genuine scarcity, not the artificial scarcity that the healthcare system in the U. S. also creates. And, I don't know what the answer to this is. 

There was one disabled bioethicist, Adrienne Ash, who joined this ventilator allocation committee in like 2011. And she basically just said let's, that we'll just have random lottery. There's no way to solve this problem that's not going to be biased. And so my question to my, myself for my, the next phase of this work is that the best we can do? Is a random lottery going to be fair? Is there a different method of disability forward distributive justice? And I'm the photo I put here is of an artwork by Alex Dolores Salerno, which is an [00:55:00] embroidery of a Facebook page that was a queer crip mutual aid page using coded language for illegally sharing hormones and medications at a certain moment in the pandemic when supply people couldn't go to the doctor, supply chains were collapsing people were losing their health insurance because they were losing their jobs. And what would it look like if we were, if we did something like this for oxygen scarcity?

What would we, what would it be like if we did something like this on a bigger scale around digital biomedical appliance scarcity? And again, I, I really I believe there's a lot of fake scarcity in the U. S. healthcare system, but certain I understand why something like oxygen and labor just everyone can't have their own ventilator, at least the way ventilators are designed right now and maintained.

So what do we do with that kind of digital object? How do we distribute it? I don't have an answer to that, but I'll end with that. 

Jaipreet Virdi: This is J speaking. [00:56:00] Historically, we all know there's been lots of movements for social justice and fight for civil rights, economic rights, and political rights, but one of the major shifts in the past couple of years is moving these protests online.

What they mean in terms of who's participating, who's being in a safe space. And we can recall from the Black Lives Matter protest and all of the uprising that followed from the death of the Murder of George Floyd is how disabled people started protecting online at the way to share this messenger.

But it was also real time movement in which we were seeing videos, audios, photographs being uploaded very quickly from the ground floor. From the site of protests that were very largely inaccessible for a lot of people. Next slide please. 

So I actually ended up joining a group of volunteers on Twitter and Instagram. They ended up creating this, a group called Protest Access, which they aim to provide social justice for all. This is largely a [00:57:00] volunteer initiative of people who are working to transcribe videos, provide captioning, or provide transcripts, to provide alt text for video. To provide other forms of assets as people request them to think about how digital spaces and the idea of protesting in real time can be made accessible.

Protest Access have wavered over the past few years because, again, this is largely a volunteer protest, and it is very much a time consuming thing. But over the past year, next slide please, we've seen a different version of this emerge, and this is in relation to the genocide occurring in Palestine, Where a digital disabled activist named Sarah Blanovec created a hashtag called Alt Text Palestine with information in a Google Doc on how you can think about embodying digital practices to provide digital spaces in a more inclusive way.

[00:58:00] And this is on the bottom corner there, it's just a snapshot from the Google Doc Toolkit where they're outlining the different kinds of contact that you can participate with this hashtag, including images from Gaza and the West Bank, screenshots of news articles about Palestine and Israel, images from protests, art about Palestine, statements, calls to action, et cetera, and how we can all participate. Again, this is very much a volunteer effort with readers participating, providing their own interpretation. 

But this is also a need for thinking about how we participate in these online spaces with not just in terms of social justice principles or the need to elevate the community, but also managing our own mental health as well. Because Alice Wong, who is a very prominently disabled activist, spends a lot of time using alt text Palestine to share information, but acknowledges sometimes the images are [00:59:00] very devastating. They're very traumatic. 

And in this one tweet, Alice said that this one was very difficult to describe emotionally and mentally as someone with a ventilator and power dependent to live. I start suffocating and panicking within two minutes without power. And this student was responding to a screenshot of a TV broadcast at Al Shifa Hospital in Gaza where two gurneys with rows of infants were swaddled in blankets. And there was a hospital bed in the background and ventilators being unused.

So essentially, I see this as a very pressing issue. And how people are responding to real time social events occurring around the world and responding in a very political movement that is still part of this historical legacy of social justice.

Remi Yergeau: Thanks, J. This is Remi speaking. We have, I think, nine minutes left in our session, so I think we should turn things over to discussion and Q& A. And I believe there [01:00:00] are folks with purple shirts who've got mics for folks in the questions as well.

Guest: Hey, this is Lydia XZ Brown. Hi, friends. Sorry, I'm like all the way in the back being super weird. My question is, I've been thinking a lot about access frictions and access conflicts, and in particular, the kinds of access conflicts that show up in sustained movement work and in work that bridges beyond the academy.

So in particular, I'm thinking about access frictions around like our labor, how we engage with one another, access frictions around shared digital or physical space, and access frictions around trauma. And I'm wondering if any of you would be willing to speak more [01:01:00] about this. That was super vague, and I need more coffee.

David Adelman: I can speak or try to address some aspect of it. This answer is going to be partial and will hopefully present some thoughts. And if others want to take it up that would be lovely. So I think implicitly, lots of us are speaking from a point of highlighting and elevating disability justice concerns and protocols.

And you are Lydia, in adjusting and pointing us to thinking beyond the academy. Because as much as we're all here academics there are limits to what academics can do with disability justice because often those systems are incompatible, right? And [01:02:00] for me, I think about this in terms of community and mutual aid, right?

And so often we tend to think, or at least the layperson might tend to think of mutual aid as this large grandiose movement of reimagining our political systems. But in action, in reality, that is not what it is. Or at least not how I experience it and not how most I think it is disability activists experience it, and so for me in my own work in thinking about how to sustain community over the long term it's recognizing the small moments of intimacy whether that's sharing soup or tacos or just how holding space for someone who is also disabled and terribly isolated during the pandemic. And you just want to have someone to talk to and scream about things with, right? 

And so it's about nurturing that space for intimacy and not expecting the other [01:03:00] person necessarily to take on all of your trauma, but providing the space. For what Mia Mingus calls access intimacy. Or the idea that you have a disability, I have a disability, they may be different disabilities, but we can acknowledge our collective strangeness together.

And this is not a large answer, and yes, there will always be access frictions that come up. But for me, as someone who thinks deeply about intellectual generosity. I also think about disability generosity, which is allowing people to come from various perspectives and not expecting them to be to present in a particular way or to be normal in a particular way.

And of course that comes from a place of privilege, right? To be able to flout expectations and regulations is not always the case, but I think that is ideally what disability activism is. And I'm sorry if I've [01:04:00] spooled out too much, but basically the answer is more DISCO dance parties and holding space for community and conversation and recognition for me, at least.

Aimi Hamraie: This is Aimi. I can say a little bit about this. Friction, of course, is not exclusive to access conflicts struggle as part of organizing. And I think something that disability and access invite us to think about is how building collaboration and interdependence in and of themselves are political technologies and political relational technologies.

And the example of mutual aid that was just given is a really good example of this. When we commit to working together especially in a disability cultural sense, we often go in with the expectation that there will be friction and that, [01:05:00] addressing the friction and working through it, designing better modes of collaboration is going to be part of the work that we do.

And so that's the kind of the type of activism that disability justice also calls on us to recognize is important to all of the different kinds of work. It's like the potlucks and people feeding each other and checking on each other and like getting each other medication when our resources are scarce.

And that's just as important as all the ways that we strategize and try to find political leverage and so it is also very frustrating and it means that there's like extra work that has to be done. But I, in my experience of organizing, it's not actually that different in disability context, and it actually may be easier because we, tend to have the tools to have those conversations and try to work through friction and conflict.[01:06:00] 

Remi Yergeau: This is Remi speaking. I think we have time for one more question. I believe we've got about two or three minutes left.

Guest: I guess I'll go. I have a question. I'm sorry. No, please go ahead. Sorry. Sorry. 

I'm a little nervous, so I wrote my question down. Thank you so much for all of this. For all of you and all the care that you put into your work. I specifically have a question for Dr. Mills.

I'm really interested in learning more about how you're looking into the intersection of race and disability when you mention disability, looking at different zip codes, and brought up how predominantly black communities in New York are already exposed to lower quality of air and systematic issues, access, accessing healthcare.

I'm interested in, and sorry if you already went over this, but if you're looking at environmental racism and systematic racism within infrastructure with the power grid itself [01:07:00] and electricity. For some context, so I'm originally from Puerto Rico and with their project, I was thinking how access to ventilators in the archipelago was portrayed by news outlets and health professionals, health organizations, which I put in quotations as an individual issue, as opposed to a systematic racial ableist issue. The overarching health messaging was if you need a ventilator, you just need to use a power generator, which is harmful for a variety of ways, because there was no electricity in hospitals. The power grid was out during and after Hurricanes Irma, Maria, and Fiona. And there are constant apagones or power outages that are regular. 

So I'm really interested in how you're looking at the Infrastructure of the power grid itself with the zip codes within New York City and for some additional context within Puerto Rico, that's, there's, it's across the archipelago, but [01:08:00] then in particularly black neighborhoods like Loiza these are never considered municipios or pueblos with emergencies when there are emergencies like COVID 19 the COVID 19 pandemic.

So I'm just interested in learning more of that intersection you brought up and access to ventilators. 

Mara Mills: You should write that article. Everything you just said. Yeah. Ventilators are not just an object. They're a huge, they're a socio technical system and. Absolutely. If you start with under resourced hospitals or area, there's both what happens to people over long periods of time.

I'm using the phrase debilitation from Jasbir Puar and others, but also there's the question of a hospital that starts out having, less access to electricity, less access to the oxygen supplies and fewer ventilators. If you get, if you have an immediate crisis, things are not going to suddenly magically be reallocated from wealthy areas to areas that [01:09:00] have less. 

And actually what happened in New York in the end, despite all of this publicity around these guidelines, the governor Cuomo, who had presidential aspirations. This was before he all the other drama around him. He never invoked the guidelines, so they never got invoked. So there was, there's the stories are yet to come out about whether there was I don't know if it's actual rationing or not. 

There have been a few physicians at a few hospitals who've said, yeah, we did see this in the early day in March, but it doesn't in a sense, it doesn't even matter because there were already hospitals that had less equipment and people who had to wait, if you have to wait in line for labor, for someone to intubate you in an emergency room that's understaffed and overcrowded, that effectively is a kind of rationing already.

I'm basically just telling the story in New York, but there's, I think you should write this article. I think it's really important. 

Jaipreet Virdi: I just want to very briefly add [01:10:00] that there's a broader history of this too that's related to the history of technology. And I think you'll very much be interested in the work of Harvey Kartel and Corinne McGuire, both of who have written about the structural the structural technological enterprise of ventilators and like iron lugs more broadly.

Remi Yergeau: We are at time, so I'm just going to encourage everyone to flap for our-