In addition to our professional biographies, our disabled biographies are as follows: David Gissen is an above-the-knee amputee and pediatric and adult cancer survivor. Aimi Hamraie is neurodivergent and chronically ill. Emily Watlington is a chronically ill person dealing with vision stuff.
REMOTE COMMUNITIES
David Gissen
Aimi, we’re doing this series of conversations about design and disability called “Rethinking Normal Design,” and you suggested that we have a conversation about Zoom. Why did you want to talk about Zoom?
Aimi Hamraie
Well, as we know, we’re using Zoom right now. Zoom is a digital video-conferencing platform that took over in 2020 from Skype, which is the technology that many people used before, as well as Google Meet, or Google Video, before that. I’ve been thinking a lot about how we used to say: “Hey, do you want to Skype with me later?” And now we say, “Hey, do you want to jump on Zoom?” And so it’s that phenomenon that interests me. It’s that these technologies are part of our social imagination, and we understand them as seamlessly integrated into how we interact. And they are also technologies that normalize interaction across long distances.
We are all in different cities right now, but even if we were in the same city, we may opt to have a Zoom call instead of meeting up in person. That’s something that the pandemic has really changed. But for a lot of disabled people, this has actually been quite normal for a long time. And for me, as a chronically ill and neurodivergent person, I’ve been using video conferencing for a long time because sometimes it’s not safe for me to be physically in person, and so I’ve done a lot of organizing and teaching and socializing across long distances. Zoom is interesting because it’s a very malleable technology that people use for different purposes—dance parties, banking, meetings. And it’s different than some of the other technologies that it supplements, like the phone or mail and things like that, because it has so much integration and connectivity.
DG
Can you elaborate a little bit more on how or why Zoom and parallel technologies and communication systems have been important for disabled people? I don’t know if a lot of people reading this will understand why Zoom or Skype are so critical for disabled people. Maybe you can also talk more about how you have used them?
AH
I’m actually doing a research project on this with my lab, the Critical Design Lab, called The Remote Access Archive. We’re looking at the ways that disabled people, whether individually or in communities, have used technology for remote participation. One of the most important reasons why we have done that is because, historically, disabled people have been spatially isolated from nondisabled people. Asylums and institutions literally removed disabled people from the population. In the mid to late 20th century, a number of technologies emerged that allowed people to stay in contact or to communicate from the inside to the outside of the institution. So people institutionalized for polio were using things like print newsletters or radio recordings on cassette tapes to stay connected. In the 1990s, with the advent of home internet, autistic culture grew around things like internet message boards. Disabled people are also often early adopters of technologies of remote access, or we create them or hack them. We use them at cross-purposes for what they were originally intended for, because they were often developed for military or business purposes. Critical Design Lab has documented about a century of different examples of remote access.
We can think about technology very broadly; technology isn’t just digital tech. It’s things that the scholar Susan Burch has written about in her book Committed. This book is about an asylum on an Indigenous reservation in North Dakota. Burch writes about how quilting was a way that people communicated from inside to outside the asylum and told their families their stories. And so there are many technologies that people use, and that ability to connect across long distances is a response to an inaccessible world.
Remote-access technologies also create inaccessibility for a lot of people. And DeafBlind people, especially, have really pushed back against the emphasis on remoteness and what John Lee Clark calls “distantism.” He talks about how tactility and closeness (rather than remoteness) are really important. So there is a lot of heterogeneity in the disability community on the topic of remote technologies.
Emily Watlington
Aimi, you are reminding me of the wonderful dance parties that your lab created during the early lockdowns of the pandemic. The spirit of creative adaptability that people brought to those parties did a lot to make Zoom fun. This spirit comes from people’s prior experience with that kind of platform, but also an attitude of adaptability and accessibility. The mindset was “I’m not just going to treat this as this tragic, lesser option. I’m going to find new ways to use this platform and make a dance party on Zoom actually fun.” I’m also thinking from personal experience, as a person who got a new disability during that time period, about how important it was to be able to have community with other disabled people through that remote platform as I was figuring out my own new access needs. This was so important for me.
DG
I rarely talk about this, but after I had cancer as a teenager, I was hospitalized for a long period of time, trying to salvage my left leg. I was hospitalized for over four months at the Hospital for Special Surgery in New York City in the late 1980s. My doctors wanted to put me into an orthopedic rehabilitation institution in a remote location, which I refused. Being in a research hospital in New York actually enabled me to be close to my friends, as well as access to all kinds of technologies and things that I could use to stay in school. They provided me with a computer, access to a fax machine, a VCR, among other things.
I was able to continue staying enrolled in architecture school by using a fax machine. I would fax back and forth for a design studio that I took at the time. I still have all the faxes that my professor and I sent back and forth to each other with drawings and sketches. Basically, it was the entire semester via fax machine, which was a model for me at the time for how I could stay in school. It is also something that I thought about as my students and I were trying to figure out how to continue education during the pandemic. So what you mentioned definitely resonates with me.
EW
I wanted to add to your story, which is really cool. There are these faxes that David Hockney made that I’m obsessed with. He is deaf and calls the fax machine the “deaf telephone.” Before he made iPad drawings that became pretty well known, he was faxing art to his friends, and he made some pretty beautiful pieces using the fax machine.
DISABLED PEOPLE’S EXPERIENCES OF ZOOM
DG
You mentioned that Zoom or Skype or Google Meet are things that people like us who are disabled have had to use because they enable us to communicate. Can we talk a little bit more about our own experiences as disabled people with Zoom, or those of our students or colleagues, that may give different perspectives on the technology?
AH
Donna Haraway says technology is non-innocent, and there are always affordances and always things that it precludes. We really see that across disability and within categories of disability, people having really different experiences. I was maybe 7 or 8 years old when AOL [America Online] became a thing. We had a home computer, and I would chat with kids across the world. A lot of my early disability-identity formation came from that, because I was able to meet other people who have my neurotype and weren’t the people I was going to school with. It became very normal for me to [spend] hours a day on AOL Instant Messenger and, later, Google Chat. So in some ways, it is normal for me to be on Zoom, too.
But the first time I used Zoom, I thought it was so clunky. This was maybe three or four years before the pandemic, and Skype wasn’t great either. It was super slow and glitchy, but I just remember not liking Zoom when I first started to use it. They made improvements by the time the pandemic started that made it the preferred platform, but I was still using Google Video and Google Meet well into 2020. What changed for me was Kevin Gotkin, the disabled artist and scholar who runs the Crip News newsletter. He was a member of my lab, and he was developing this concept of disability nightlife. We decided to have a remote, online dance party. Kevin went through several platforms trying to figure out how to do this and incorporate accessibility. For a while, he was doing Instagram livestreams, and people could participate, but they couldn’t see each other. They could just see him and then write in the comments. We ended up using Zoom because you can have the visual and the chat. You can use the language translation channels in Zoom for audio description: someone can turn on the audio description, and someone can be assigned to [describe] what’s on the screen. People can share their screen. It enabled so many multilayered and multisensory modalities to coexist, and I don’t think that capacity existed in any technology before.
With that, it became the standard for accessibility for some people. However, especially early on in Zoom, you couldn’t change the way that captioning looked, so that was a huge problem for a lot of people. Now, I think you can resize it. The AI captioning varies in quality and gets slightly better, but isn’t that much better. It’s usually terrible.
DG
As you mentioned earlier, some of those fluid features of Zoom are barriers for some users. For example, the blind scholar Georgina Kleege [who participated in the first article in this series] has told me many times that people need to turn off the chat function in Zoom for it to be accessible to her. This is because she uses speech-to-text tools. So as people are speaking and typing, she’s hearing a computer voice that’s telling her what people are typing in the chat, and she’s hearing people speak as well. One of the other things that she mentioned, which, of course, both of you know well, is that people rely on the imagery that’s within their presentations or around them to explain their ideas or concepts or presentations, without actually explaining what’s in those images using verbal description.
AH
It raises the question of what counts as access and who has access. As Zoom continues to change, and as any of these platforms continue to change and incorporate more features, it then creates new frictions and new opportunities for people to create access practices.
You mentioned in your email a practice in some disability spaces for people to image-describe themselves on Zoom screen. That is an attempt to give information, not just about what someone looks like or how they identify, but what kind of space they are in. But I’ve heard critiques of that from blind people, and there is some disagreement about the best practice. Sighted people have interpreted that practice as everyone going around saying their identities as opposed to providing a visual description for accessibility.
DG
I would like to describe things about myself that can both be heard in the quality of my voice and the features of my face. So when I describe myself, I want to say, “I’m a proud Ashkenazi.” If you are deaf and/or blind, that says everything you need to know about my appearance and the sound of my voice. [Laughter]
EW
One thing that makes Zoom inaccessible to me is that you cannot zoom, as in enlarge text on the screen, which is ironic given the platform’s name! But when someone shares their screen, and there are words, often they are using a smaller font size than what I would use. And if they have a much bigger computer screen than me, it changes the scale entirely. In a meeting, it can be really hard to follow along.
I think “cross-disability solidarity” is a good term to get in here. It’s easy to think, “Oh, Zoom is accessible.” But there are all these kind of conflicting access needs, as we’ve talked about. People who are new to access often want a checklist of how to get things right, and that’s appreciated. But really the best way to do things is to just always be checking in and open to feedback, because everyone will have different needs, and there’s no way to anticipate all of them.
DG
One of the things that I think about as a disabled Zoom user is the fact that I never wear my leg when I’m on Zoom, because I’m at home and I don’t have to. With all due respect to my prosthetist, artificial legs are designed for walking; they are not designed for sitting or standing still. So sometimes when I’m in a meeting at school or I’m teaching while wearing my leg, I’m not 100 percent relaxed, because I often have physical discomfort.
My ability to meet with people or teach from home without wearing my artificial limb really changes my disposition. I also don’t have to think about other people thinking about me being an amputee, which can be awkward because I don’t wear cosmetic coverings on my prosthetics. This can make some people uncomfortable. So for me, Zoom is an interesting experience as an amputee, because when I’m on Zoom, being an amputee is just not an issue. On the other hand, I would say that being an amputee is such a big part of my identity that when I’m on Zoom this chest-up visage that people have of me is not me. It’s not a complete picture. So my experience of Zoom is not about whether or not I can use it as a disabled person. It’s slightly different, but still connected to my experiences as a disabled person. I imagine other people must have similar experiences. I’m curious if wheelchair users think about Zoom in similar ways.
EW
Yeah, that’s interesting. David, I’ve also thought about how in our fields, more and more art and architecture events happen in person. But the disability events are often on Zoom for reasons of accessibility, which is great. But when you are a speaker, Zoom events often pay a lot less.
DG
I think about that all the time. If I agree to do a lecture or panel over Zoom, I feel as if I’m agreeing to a much lower lecture fee than I would ordinarily be paid. My lecture fees support almost all my research expenses.
AH
I just insist that it be equivalent, but also I don’t rely on doing those events for my primary income. So it would be different if I did.
The thing that you said, David, about people not seeing you not wearing your prosthetic leg on Zoom was super interesting, because I was on the committee at my university about the campus reopening that was trying to decide whether to come back in person or have hybrid and remote teaching. There was this consistent discourse that we shouldn’t do hybrid or online because people just want to stay at home in their pajamas and be comfortable and not take school seriously. I found that so strange because I was sitting there thinking, But isn’t everyone really uncomfortable in their work clothes? For me, my work clothes are a sensory nightmare, so being able to stay home and wear different pants while I teach on Zoom actually made an enormous difference in my baseline level of irritation. I didn’t even know it was possible until the pandemic happened, and then I had this experience, and I was like, Oh, O.K., I’m gonna wear different pants to work from now on! What it brought up for me is that in the popular imagination there’s this association of Zoom with these really ableist ideas of laziness or comfort, with discomfort being the accepted norm. To me, that is just a fundamentally ableist idea. And the fact of Zoom providing access in the ways that it does really grates on some people because it challenges that idea.
EW
I’m also thinking about times when I’ve been traveling to parts of the world where Zoom is banned, which was a good reminder that accessibility always has limits.
I’m also thinking about this idea of eight hours of work, eight hours of rest, eight hours of leisure, and how it assumes that, one, you don’t have a commute and, two, you have a housewife to do all the chores for you. Zoom at least allows you to eliminate the commute—and maybe do laundry or dishes while listening to a lecture!
MULTI-MULTI-MEDIA
DG
I was wondering if we could talk about how disabled-access technologies transform multimedia platforms into multi-multimedia platforms. Emily, your work in particular has explored this topic, and focused on how access needs have reimagined the experience of watching a video.
EW
The best way to explain this is to describe a video that’s been really important to my thinking, and that was recently shown at the Walker, by an artist named Carolyn Lazard. It is like a “retrofit” of an episode of Julia Child’s cooking show. Carolyn chose that piece because it was the first TV program to have open captions; it was on WBUR. So open captions are always on the screen, whereas closed captions can be turned on and off. Some people, when they saw open captions, called in and said, “This is so distracting.” That was such an interesting moment in media history; that could have been how all TV was. In this video Julia Child is already describing everything she’s doing in a way that mimics audio description. Then Carolyn tries to add a more fleshed-out audio description between breaks in Julia Child’s monologue, while also captioning everything. And there’s not a lot of time between spoken segments, because Julia Child talks most of the time. To do it thoroughly and properly as one might like, it starts producing this cacophony, and there’s text everywhere and people are speaking over one another. The cacophony becomes part of the piece, and it turns into this manifesto that takes over the whole program. It’s a really beautiful piece that’s thinking through all these limits and possibilities.
In addition to this, I am very interested in early video art, which is a movement that started in the late 1960s with artists who wanted to make work accessible to people outside of the white cube or the gallery. A lot of those pieces showed on all these different formats—on TV, as guerilla screenings, as window displays in stores, and eventually also in museums. I was interested in that spirit of accessibility and in the ways the artists then were allowing their work to take all these different formats, including TV. Because some of these works of video art were on TV, they would have included closed captions due to legal requirements and the technology of TVs at that time. But now, museums have taken this approach of “We must show the original format,” which often means that videos are shown without captions, which is antithetical, actually, to the idea of using video in the first place. I think an authentic version would have included these captioned formats.
Meanwhile, there are a number of disabled artists, like Christine Sun Kim and Liza Sylvestre, who are working with captions as a medium for their art practice, showing all these different things, like the glitches they can make, errors that are both infuriating and kind of funny.
DG
One of the things that’s so interesting about watching transcribed television is that I know what these people’s voices sound like. Julia Child’s voice is one of her most distinguishing features. I’m curious: Have there been tools that have tried to transcribe the character of a person’s voice? Is that something within Deaf discussions of media and technology?
AH
The only thing I can think of is that there’s an emerging practice, a disabled artist practice of sound description, and it’s something that people do at our dance parties. They describe music and voice using technical musical terms; there’s staccato, for example. I don’t know if it’s ever done just for regular vocal speech. Emily, have you ever seen a caption that’s like “hoarse voice” or something like that?
EW
Yeah, I’ve seen that when it is relevant to the plot, but that’s always open to interpretation, which presents a kind of conundrum when it comes to how to focus on what to describe. Because a lot of things that aren’t dialogue operate at a more intuitive level, and some people who create descriptions will pick up on and consider certain things over others. So perhaps something that this particular describer didn’t choose to include would actually have affected a deaf viewer’s interpretation of the film, which is why there’s a movement toward having multiple audio descriptions and captioning with multiple tracks you can choose from. Hopefully then, you can find a describer you like or relate to. One might be using a lot of technical terms, and you might want someone who appreciates that, or you might be someone who finds that alienating. So the more options, the better.
THE IMPACTS OF ZOOM ON EVERYDAY LIFE AND PHYSICAL SPACE
DG
Aimi, I want to go back to something you mentioned earlier. You said that Zoom normalizes interactions. That’s a very interesting concept. Can you talk about that?
AH
Zoom normalizes interactions across long distances. So it’s more expected that, for example, certain people provide Zoom as an option, like a therapist providing remote options in addition to in-person options. It’s just expected as part of the menu of available things. Or, in the past, there would be times when people would just cancel a meeting because their car broke down. Now there’s an expectation that we still have it on Zoom. When there’s bad weather, we don’t cancel class: We have it on Zoom. It really shifts the sorts of allowable and expected labor and possible labor. But it also, of course, enables so many things—like you could move to a new place and not know anyone but spend your evening Zooming with your friends from the place you lived before, and maybe your social life would only be mildly interrupted. There’s something about video that makes that more possible than phone. It has so much texture and it’s spatial. Right now you all are seeing me hold my cat in my office, and there’s a staircase behind me, and so you’re seeing in my house. That’s not something that you get when you talk on the phone. And so it encourages a different type of interaction.
EW
I’m just thinking about this serious injury I had during deep lockdowns when nonessential doctor’s appointments weren’t being held. I did physical therapy on Zoom, and I’m grateful that was an option. On the other hand, I wonder what my healing process would have been had physical therapy been more accessible. It’s a strange experience.
DG
That must have involved all kinds of audio description because, when I do physical therapy, I have to tell them exactly what’s happening with my leg or parts of my body. It’s impossible to do purely from video.
EW
Absolutely. And in that time, there was this feeling that, any week now, things might change and we will go back to in-person gatherings.
DG
Can we also talk about Zoom’s impact on physical space? I don’t like theories of architecture and technology that claim “Elevators create tall buildings” or that “Steel makes tall buildings possible.” Elevators go down, too. Steel structures can enable architects to design horizontal spans of space. And Zoom, of course, can have all kinds of spatial effects. But we are seeing a spatial effect from the use of Zoom. In New York, because of the fear that people have about sharing respiratory spaces, together with the cost of real estate and the use of Zoom, we are seeing offices used less and less. We’re seeing less and less commuters on trains, although that’s changing a little bit. So I’m curious: These spatial effects of Zoom seem very significant. They’re really the spatial effects of the pandemic, but they are related to the fact that we can have conversations like this on Zoom.
AH
It does seem like the possibilities of Zoom threaten real estate, particularly commercial real estate, in a significant way, and that’s why there are these policies against Zoom. My university says we can’t teach on Zoom because then we won’t get all the tax rebates of all the dorms and office buildings. There’s an attempt to re-entrench this spatial arrangement that existed before the pandemic by outlawing the use of Zoom. But a lot of people are devoting significant portions of their home space now to office space. It shifts the economy of who pays the overhead to work. People rearrange their homes to have a Zoom background. I never really did that, but I have a place that I go that is presentable.
DG
Those of us who live with other people have to share our spaces for more hours of the day when we Zoom from home. It’s a major negotiation, both interpersonally and spatially. I need to use the room that has a door that’s not our bedroom to have a Zoom conversation. I think people are thinking about the kinds of apartments they’re renting and what kinds of spaces they can live in.
AH
Yeah. If you were to try to find housing now, you might think about a dedicated Zoom space in a way that you probably wouldn’t have in 2019.
EW
I’m also thinking about what Aimi mentioned earlier: Sometimes I find myself thinking, technically, I could take this meeting if I took it on my headphones on the sidewalk outside of this other meeting I had to do. The intrusion of Zoom into physical spaces creates the sense that we are always technically available and makes work/life boundaries weird. There are new negotiations and calculations that weren’t there before.
DG
Yeah, the 15 minutes that I had walking between meetings was a really important mental health moment in my life that’s now gone. I go from one thing to the next. But, on the plus side, all the lighting in my and my friends’ apartments in New York has gotten a lot better.
AH
Another thing to mention, which is related to both of your comments: Sometimes, the other side of the coin of access is surveillance. In addition to the expectation that we be constantly available through technology, there are ways that technology can be dangerous. There’s so much built-in surveillance in Zoom because of transcription, and so we have to be careful about what we share or don’t share. I don’t know if someone having an abortion can talk about it on Zoom in a state like mine that has banned abortion. I think that grates against access a little bit, because often disabled people are actually in communities that are under the threat of surveillance for other reasons. Then our access technologies feed into that in certain ways that we may not want. Or if we think about Zoom-bombing or doxxing, these are some of the costs of connectivity.
DG
I definitely noticed that the things people will say or will not say in meetings have changed with Zoom. I think in Zoom work meetings, people are very reluctant to say certain things because they’re on the record in a very different way. There’s a superficial polite quality to a lot of the interactions I have on Zoom that’s very different than some of the tensions and frictions I’ve experienced when things have been in person.
ON ZOOM FATIGUE
DG
We’ve been speaking about Zoom for an hour. Are we having Zoom fatigue yet? Can we describe what Zoom fatigue is like for us? I get blurriness in my eyes, and I just need to stand up. When I went to in-person meetings back in the day, you could get up and get yourself a glass of water. It’s not so graceful to do that on Zoom.
AH
Yeah, even though I’m someone who really benefits from Zoom and uses Zoom a lot, I also have a threshold, and if I cross the threshold, I get migraines. My body hurts. I have to do physical therapy. During the early part of the pandemic, I needed to go to the chiropractor because I was on Zoom so much, but I couldn’t because of Covid. There’s that deep exhaustion that comes from being around computers and sitting in a certain way all day. It’s an extension of that thing that happened with office work in the mid-20th century, where “white collar” office workers started getting all these injuries just from sitting at desks. Zoom fatigue is real. I had students asking for access accommodations for the first time because they didn’t know they had the effects of Zoom fatigue, but now it was a thing that they had to get accommodations around.
EW
I never went back to working in an office. I still fully work from home. I have neck issues that have nothing to do with Zoom, but I see a physical therapist who spends part of her week working at a retirement community. She was saying that the elderly population has much better necks because they didn’t spend so much time on Zoom.
DG
In the interest of protecting our necks, and general health, I think that’s a perfect place to end. Thank you both.▪︎
David Gissen is a historian, designer, and educator. His books include The Architecture of Disability (Minnesota, 2023), Subnature (Princeton Architectural Press, 2009), and Manhattan Atmospheres (Minnesota, 2013). He is currently Professor of Architecture and Urban History at the Parsons School of Design/New School University.
Aimi Hamraie is Associate Professor of Medicine, Health, & Society and Director of the Critical Design Lab at Vanderbilt University. Their work focuses on disability culture, design, and crip technoscience. Hamraie’s book, Building Access: Universal Design and the Politics of Disability (2017), was named an “Essential Book” by ArtNews. They are also a 2022 United States Artists Fellow in Media and a presidential appointee to the US Access Board.
Emily Watlington is a critic, curator, and senior editor at Art in America. Her writing often focuses on disability culture but also those places where art and science meet. She is a Fulbright scholar with a master’s degree from MIT—in the history, theory, and criticism of architecture and art. In 2020, she received the Theorist Award from C/O Berlin and 2018 the Vera List Writing Prize for Visual Art. When she is able to step away from New York, where her life revolves around reading, writing, and seeing art, she is curious about surfing, foraging mushrooms, deserts, and animal liberation.
Explore more conversations and articles that what everyday design could be if freed from concepts of a “normal body" in the series Rethinking "Normal" Design presented as part of Insights 2024 Design Lecture Series.
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