Episode 38: Contra* Remote Access History with Corbett O’Toole

The podcast introductory segment is composed to evoke friction. It begins with the sound of an elevator crunching as it goes up. A robotic voice says “floor two.” Then music with a mysterious tone comes on. A series of voices define Contra. Layered voices say:

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Contra is friction… Contra is texture… Contra is questions…Nuanced…Collaborative…Contra* is world-changing…Contra is innovation, messy, solidarity, interdependence…Contra is thinking about design critically. Contra is a podcast.

 

Throughout, there are sounds of typing, texting and Zoom being opened. 

Then an electric guitar bass note fades into the sound of a digital call ringing and starting. The intro ends with the sound of a Facetime call ringing and then picked up. 

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Corbett O’Toole: 

I don’t go in public spaces. I don’t go into any buildings. I don’t meet people indoors. Remote access has been, literally my lifeline to the world. And everything from friendships, like every other than sex is remote access for me. 

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[Strings ripple under Aimi’s voice]

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Aimi Hamraie: 

Welcome back to the Contra* podcast. I’m your host, Aimi Hamraie. On this season of Contra* we’re drawing on the Remote Access Archive, a free online archive that documents how disabled people and communities have used technology for remote participation both during and before the ongoing COVID-19 pandemic. Today’s episode features an interview with queer disabled elder Corbett O’Toole. It was recorded by me, Aimi Hamraie, on February 22nd, 2023 via Zoom. Corbett and I talk about the role of technologies in disability advocacy. From her role in the polio community and early disability rights movement to her contributions to disability justice and more recent experiences with Long COVID. Throughout we discuss the significance of remote access technologies, especially telephone, email and Zoom for queer, feminist and anti-colonial cross-disability organizing. 

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[music fades out]

Aimi Hamraie: 

My name is Aimi Hamraie. I appear on the screen as an olive skinned transmasculine person with glasses and short, dark, curly hair. I'm in a yellow room with plants and a dry erase board in the background. I'm here today on February 22, 2023, with Corbett O’Toole. Would you please tell us your name, age, and where you currently call home?

Corbett O’Toole: 

My name is Corbett Joan O'Toole. I'm currently 71 years old, and I live full time in a van. Today, I'm in the middle of the Central Valley. So I'm calling in from Button Willow, California, which is on Highway 5.

Aimi Hamraie: 

What words do you use to describe your race and gender?

Corbett O'Toole: 

I'm a white woman, and fairly pale skinned, and I identify as a cis female.

Aimi Hamraie: 

And do you wanna do an image description?

Corbett O’Toole: 

Sure, I'm a white woman with salt and pepper hair, really short. I'm wearing bone conduction earphones, I have no teeth, and I'm wearing a purple top with sheep wearing hats and scarves that says “baaaa humbug” and a blue knitted ascot thing. And I'm in my van, but the background is blurred.

Aimi Hamraie: 

Do you identify as a disabled person?

Corbett O’Toole: 

I do. I identify as a person with multiple disabilities. So I have physical disabilities. I use a wheelchair. I have Long COVID, so for me, what that means is, I have chronic fatigue pretty extensively. I've lost all my teeth to Long COVID. I also have psychiatric disabilities and….Lots of itises, arthritis, bursitis, all of the itises. But my primary mobility is that I use a wheelchair to get around, and I'm also a fat woman.

Aimi Hamraie: 

Do you consider yourself to be part of disability community or disability culture?

Corbett O’Toole: 

Yes, I do. I've been disabled since I was 12 months old with polio, and I've been… I attended disabled kids camps as a child. So that was my first encounter with disability community, and then as an adult, I moved to Berkeley, California, and became involved in the disability rights movement, and then have been part of a whole bunch of, you know, disabled and queer disabled and parents with disabilities and lots of disability communities over the years.

Aimi Hamraie: 

Yeah. And these are thankfully documented in other archives as well, including the Bancroft Library and your personal papers?

Corbett O’Toole: 

San Francisco Public Library history archives.

[Long, low chords]

Aimi Hamraie: 

Yeah, so today, we're going to be talking about remote access, which is a term that we use to describe the ways that disabled people and disability communities have done different kinds of participation at a distance. And so I'm gonna ask you some questions about your experiences with this, both before and during the pandemic. So I want to see with before the pandemic. Did you have any experiences of remote access and participation that you can recall?

Corbett O’Toole: 

So I'm gonna use the term remote access to mean organizing via email. Prior to their being video options that were available to me, basically from 1993 to ’95, I was working with a group of disabled women across the United States and Canada. And we were putting together a group of women, disabled women to go to the Fourth International Forum on Women for the United Nations in Beijing, China, and we did all of that work completely on email. And then in, from ‘98 to 2000, I was working with a group of people spread across the United States. There were like 10 of us, and we were organizing the first International Queer Disability Conference. So those were specifically things where remote access created opportunities and created events that wouldn't have been possible without having those remote access options.

Aimi Hamraie: 

So the organizing for going to the UN Meeting in Beijing was from ‘93 to ‘95, which, to me those dates stand out, as also kind of around the time that personal email was becoming available to people outside of government and things like that. So, how is the availability of technology affecting you at that time in terms of being able to make these connections? And what were you and other people doing over email?

Corbett O’Toole: 

The people that I knew, we were shifting from having sometimes met up occasionally at conferences, and then intermittently having phone conversations, but this is when long distance was a separate charge from local calls. So, in the old days for me it was AOL as an option. I remember a whole bunch of us were on AOL, and we would have communication there. This is a ‘93 to ‘95 stuff, and we were spurred on because Laura Hershey, who is significantly disabled, had gone to Nairobi for the Third International Forum on Women, the United Nations one. And had come back and talked about how organized the disabled women in Africa were. Basically she went to Nairobi because she's like, the US women are saying, “don't bother we don't care about disabled women coming in.” She said we have to change that conversation. So we made a commitment to get disabled women to Beijing, even though the US women’s official group, the NGO group, had said to us, it’s too inaccessible, we’re not gonna make any access for you, and we’re not gonna help you, so please don’t come. They literally said to our face, please don't come. This is kind of the way it is sometimes with white feminism, and white disabled women. So we're like, well, we're going, so we were on our own for fundraising, and brought 50 women, mostly from the US, a few women from Canada and a couple of women from Mexico.

Aimi Hamraie: 

Hmm! So it sounds like you met people at conferences and you exchanged email addresses. And then you have some correspondence with the organizers of this event, and then had to organize your own funds and travel, and all that kind of stuff. And so how did email help you do those things?

Corbett O'Toole: 

Well, email saved us a lot of money. For one thing, we didn't have to make long distance phone calls and budget for that. Another thing is email allowed us to have communication across disabilities. Because you know, typically getting something together in person, if we had print stuff we had to figure out how to make it accessible to the women with vision disabilities. And if people were talking, we had to make it accessible to the women with hearing disabilities. People with environmental illness at that point didn't have a lot of options for any kind of in-person meetings for lots of different reasons, the planes were inaccessible from from a chemical point of view, and the gatherings were inaccessible. So it allowed certainly not all women, but a lot of women, to have a space that provided access in a way that we hadn't had before. People didn’t have to go anywhere, women with mobility disabilities didn’t have to deal with transit. So it kind of created this sense of, for the first time, we were having conversations across disabilities in a way that allowed us to, if you will, share space. One more thing is, it didn't matter where people were located. We didn't have to deal with any time zone issues.

Aimi Hamraie: 

So it was like asynchronous participation basically. Were there any access barriers that came up around email that you can remember?

Corbett O’Toole: 

Not everybody could afford it. There were financial costs. There wasn't much in the way of training, so those of us that lived in urban areas that had access to people who are more tech savvy, or had more money, or were connected to organizations that could provide…you know so much of the access to email was about someone, one person teaching another person how to do, which sounds silly now, given the ubiquitousness of email. But there was a time when it was whole learning curve. Also it really prioritized people for whom typing cause there wasn't a lot of like…Dragon Dictation so an equivalent didn't exist, so somebody who couldn't type for themselves had to dictate, it also really excluded people that were not primarily text-based people. It really excluded the whole self-advocacy, developmental disability community that's primarily an oral tradition community, not a written-based community. There were definitely people that weren't part of the conversations.

Aimi Hamraie: 

Do you remember if people had their own personal computers back then, or were people using Internet cafes?

Corbett O’Toole: 

Well, you know I'm a white woman with a physical disability, who got Department of Rehabilitation to send me to college. So there was a whole bunch of folks in my generation like, so I'm seventy-one now, so in the sixties who got their college education paid for, and so that gave me access to stuff like people that had, hand me down computers or ways of knowing. I was working at the Center for Independent Living in the early seventies, and then at DREDF, Disability Rights Education and Defense Fund. So I had access to people that had access to stuff. And so I could say to somebody, what do I buy, or how do I get a deal on this, or do you have to hand me down? So I was able to have a personal computer. There was a privilege to being networked that made the likelihood of having a personal email account and a personal device greater. 

Aimi Hamraie: 

And it sounds like networks of disabled people and disability community organizations were facilitating access to technology in certain ways.

Corbett O’Toole: 

Within the constraints if you're white and physically disabled, you had the greatest access to resources. And then, if you were blind and white, you had a bunch of resources primarily through blind networks and then pretty much everybody else was “good luck, you're on your own, figure it out”.

[Long, low, twanging chords]

Aimi Hamraie: 

I wonder if you can think of the remote access that you may have used or seen other people use earlier than the nineties in those kind of like pre-internet times.

Corbett O’Toole: 

So I was aware, and the polio community something that later be called later became G. I. N. I., and it was a whole post-polio network and a newsletter and also letter writing between members. I think part of it was attached to people that were using iron lungs, or using respirators of various kinds. I knew that the blind folks always had radios in their houses, and had kind of, if you will, “blind radios” and “blind stations” that they would allude to, but I wasn't particularly privy to that. 

At that point in Berkeley, the School for the Deaf was still there, and it was run by Deaf people, and it was a huge center of Deaf community and Ella Mae Lentz was one of the early documenters of American Sign Language as a language, was based in Berkeley. So I was aware of a lot of ways that Deaf communities had networks… people would jokingly talk about going to somebody's house and just waiting for hours till they came home, because they had no way to tell them they were coming. The Center for Independent Living, early on, there was a Deaf man named Dale Dahl, who was a multi-generation Deaf ASL signer, and he became a hemiplegic, and so he just wandered into the center one day, and then just kinda never left and taught all of us sign language. So there were these very informal ways of kind of connecting people that we saw that happened in different kinds of communities. I recently talked to Susan Molloy, M-O-L-L-O-Y who is very early on in multiple chemical sensitivity. And she has an entire, shed of newsletters, because that community did a lot of newsletters and letter writing as ways of organizing themselves. I wasn't personally participating in them, but it was like I knew enough to say, oh if you need this resource, that's where you go.

[Low twanging chords]

Aimi Hamraie: 

Earlier when we were talking about email, you were talking about the cost comparison between email and phones. What are some ways that phone communication was part of disability, culture, and community and organizing that you can remember?

Corbett O’Toole: 

For both the Beijing Conference and the Queer Disability Conference, Laura Hershey was involved, and by the time we got to 1993 Laura couldn't use her hands anymore. So any kind of typed communication required her, in those days, basically to have someone else typing for her. Later in time, things like Dragon Dictate became available, so it's just so much faster just call her and say, hey, you know, what about this? What about this? What about this? But her partner, Robin Stevens, who has significant cerebral palsy speech, is much more challenging to understand on the phone did much better via email. When we call the house, if Robin was talking, Laura was literally translating voice, voice interpreting. So in some ways we used the tools interchangeably. It's kind of like whatever access, whoever you needed to talk to you, did the access that made the most sense for them. You know, if you were into different time zones and they were a night person, you were a morning person. You did asynchronous email if they like text not if it was somebody like me, where my communication is pretty direct, so my voice communicates my message more clearly and less offensively than typed. So it just kinda…we just kinda did both.

Aimi Hamraie: 

It’s really interesting that navigation of when to use text and when to use phone. Do you remember any disability conferences where people were maybe doing kind of like a hybrid or entirely remote format.

Corbett O’Toole: 

In pre-COVID? No, and, in fact, lots and lots and lots of people, lots of disabled people would ask for it, and it was always no. I mean, I remember going to conferences or going mostly to SDS, and I would remember people reading papers for each other. But I don't remember any ability for people to call in or answer questions from the audience, or even do their paper that way. 

I think there were a few SDS where there was a video recording. But it was like a prerecorded, not a live presentation. But I don't remember anything live or interactive, that was remote.

Aimi Hamraie: 

Do you have a sense of why people maybe were asking for remote options?

Corbett O'Toole: 

Yeah, I mean, yeah, it was all kinds of stuff. It was, you know, almost none of the people with multiple chemical sensitivities could ever attend those conferences. They were always in hotels, they were never accessible for that. Another was economics. it was $1,000 to go to SDS. You know, even if you shared a room 17 ways, there was still food, there was still conference fees, there was still an airplane, so it was a very expensive thing to do, and particularly for people like me, who are community scholars. It was really hard on fixed income. So lots of people wanted access remotely for economic reasons, for disability reasons. For energy level, for transportation issues. People didn't have money to pay an attendant to drive them to the conference and work with them extra hours. That was all out of pocket…if they had a budget for an interpreter, they didn't have a budget to help people with attendant costs kind of thing, or the cost of an extra room, or whatever. And also there was an issue that things started at 9 in the morning, and everybody I know that's a quad, you know anything much before noon is pretty much not gonna happen because their attendant morning schedule. If they wanna have to be something at 9 in the morning, they have to be up at 4 in the morning. There were lots of barriers that seem like they could have been negotiable, like, for instance, if someone could be watching a presentation while they were doing their morning attendant routine, they could be participating later in discussions about it. It isn't necessarily that they had to be in the room, but the fact that . was no way for them to know what happened in the room was really a big problem. And also stuff was never recorded. If you missed it in person, you missed it completely.

Aimi Hamraie: 

Between the late nineties, and when the pandemic started in 2020 in the US, do you have any recollections of remote access during that time?

Corbett O’Toole: 

So, I have brain fog from COVID. So this is part of my brain: this is today, there was yesterday, and there was some time in the past. Prior to COVID I was attending some things on zoom. I would see stuff mostly by big institutions, mostly with no actual access, like no interpreters, no live captioning, or even actual transcription. I was using Facebook a lot. And people would post they wanted remote access and the best you could get, sometimes, was that they would have been a panel that was videoed, and sometime later it might end up on Youtube or an institution's channel, usually without captions or any audio description. I always want remote access. My income hasn’t changed since 1990. I think I've had about, maybe a $100 cost a living increase in whatever that's been, 30 years. So the economics for me, plus my increasing fatigue, even pre-COVID, meant that I was always on the lookout for remote access options.

I mean, remote access options are hugely important to me,.

[Long, slow, low chords]

Aimi Hamraie: 

So, okay, maybe this is a good time to shift into talking about the pandemic era. Have you participated in remote access or used remote access since March of 2020? And if so, what does that look like?

Corbett O’Toole: 

So, because I had long COVID so early, and because for me it was a debilitating situation –– I had pneumonia for the first 7 months –– I switched pretty much exclusively. Like, I don't go in public spaces. I don't go into any buildings. I don't meet people indoors. So remote access has been literally my lifeline to the world, and everything from friendships like everything other than sex, is remote access for me. So I use it a lot, and I pay attention a lot to what is and isn't available. For me, the big shift happened when, in March of 2020, when the Longmore Institute started doing webinars with access baked in. That was a huge game changer, because now when I would see something online, I could post it on public social media spaces and say, there will be live captioning. 

That way of being accessible in a way that makes sense to broader disability communities was really important to me. I've been in recovery now eight years, and I do all of my recovery meetings in Zoom or online, 100% of the time. And I do a meeting everyday. So I've seen the kind of ways that different spaces have and have not embraced accessibility in relation to remote access, and which systems have embedded certain kinds of remote access and which systems have made it optional. It’s surprisingly not related, in my experience, to resources. So, for instance, the Massachusetts Historical Society, which has a very large institutional budget, held a series of eight seminars on disability history topics, and only four of them had any captioning or access for people that couldn't hear. Whereas other organizations will just build in either real time captioning or a professional sign language interpreter, or something else. So it seems to be kind of a matter of consciousness and commitment to disability, rather than necessarily institutional budget. But yeah, my life is a 100% remote.

Aimi Hamraie: 

And when did you go on the road with your van? I can't remember, or the bus first? 

Corbett O’Toole: 

I went on the road, November 15, 2020. I got COVID in February 2020, the recovery community primarily went online at that point as well because of lockdowns…a whole world of information and work that I wouldn't have access to that had formerly been just: you have to go to this conference, you have to go to this place, suddenly became available. It was like - it was a feast. It was such a lovely feast of just…I got to see speakers, hear panels, that I would never have seen or heard otherwise, and I say that as a person with the privilege to be able to access something that has no accessibility other than just being onscreen.

Aimi Hamraie: 

The possibility of zooming in or doing a live stream gave you access, even though you were on the road and traveling, experiencing your symptoms and hopefully getting care for long COVID. It sounds like there's a greater number of things and somewhere accessible or more thoughtful about what types of accessibility might be needed.

Corbett O’Toole: 

The Internet, the Internet got cheaper, just being able to use an email or whatever got cheaper, having access to a Wi-fi signal became more available. Part of my journey in the nomad community is that I have 2 forms of online access, basically a hot spot on my phone and a hot spot that's separate from my phone on 2 different networks so I pretty much always have some kind of Wi-fi access, at least good enough for zoom. But I do my social life on Zoom, I do my work life on Zoom, I do my scholarship research on Zoom, I mean on the Internet, like I am completely connected. Everything for me is only remote access.

Aimi Hamraie: 

In figuring out how to do that, did you figure that out yourself? Was anybody helping you figure it out like, were there other disabled people that you knew who were like, here's the best way to get Internet and your van, or?

Corbett O’Toole: 

Because the nomad community is not location-specific, I needed people that knew how to think about Internet access in a non-location specific way. There's a thing called the Mobile Internet Resource Center. Which is, a couple of nomads started it, and they keep track of, what are the best deals? What are the best ways to go? And they have a network of providing very concrete advice. So I depended on them in terms of which way to go. 

I always find out what’s the access level of the event. I make a special access note, so people can know what the level of access is going to be provided before they sign up for the EventBrite webinar. One of the things I've become increasingly aware of, mostly through Cal Montgomery, is ways in which the ubiquitousness of Zoom as the panacea for everything is, in fact, very problematic for a lot of people. I recently encountered this in the recovery community. I was telling a friend about a meeting I go to, when they came to the meeting and I wasn't there that day, and they said to the host of the meeting, you know, “can you toggle the switch to show close captions” and the host is like “I don't know how to do that,” and then just ignored them. And it was pretty, you know. It's pretty tacky, but because recovery communities are…it's a completely decentralized model, and each group is autonomous, accessibility in that community has been hugely problematic. I mean, hugely problematic. You can almost never get a sign language interpreter at any of the meetings. Access of any kind is not really built into the structure, so it's a place that has enormous barriers.

But even within disability events hosted by disability organizations, now, what's happening is, and I'm air quoting and being extremely ironic here, you know, “the pandemic is over, hahaha, and so we don’t need any of that stuff anymore, hahaha, and so we’re just not gonna have access.” And so what I've been experiencing is things I would want to go to have pulled back. 

I consider hybrid hell. I've seen descriptions of how hybrid could be good, but I've never experienced a hybrid meeting of any kind that was actually well done. And more and more, it's just like, “we don't have to bother with zoom anymore, because if you really cared you'd come in person to this thing that's inaccessible to you as a person who can't be in a room with other people. As well as, we're not gonna provide any other accessibility, anyway.” From a cost analysis point of view, it seems very counterintuitive to me. The mainstream world has decided that you know the pandemic over and Zoom is no longer as needed, and it's only if it's convenient for them, do they bother doing it. My world, in terms of my access to the outer world, it has gotten a lot smaller. Particularly in the last year, in terms of accessing that world.

Aimi Hamraie: 

Do you have a sense of what happened that made some people think that pandemic was over, or to do this shift away from remote access during the pandemic?

Corbett O’Toole: 

I don't understand exactly why. But what I've seen is this, even throughout lockdowns and stuff, there was this narrative that quote unquote, “normal” means in-person, face to face. And disabled people have been fighting this forever, because face to face is often the most inaccessible form for us, or the most expensive way to connect. “Of course we can meet in person unmasked, because Covid is not that bad.” “Of course we can meet in person, because it's quote unquote, “real,” as if there's some intrinsic like absolute value that in-person is real and digital connection is fake. “You people always needed special stuff anyway,” as kind of the narrative I hear around just about any of us saying, you know, Zoom is accessible in-person is not. “Well, you people always want quote unquote ‘special’ things, and we can't really accommodate special.” So you know, “haven't you heard that the pandemic created economic problems for us? And we don't really have the time, money, resources,” when really, it's really like “we don't care.”

But you know my writing, I've been saying for years, it's easy when you start from the perspective that you know they want you dead, and the world is set up as if you didn't exist. It's part of their narrative, I mean, it's heartbreaking.

I wanna say one thing on the positive, if I can. I've been on the road two years and four months. One of the things people often say to me is, “Aren't you lonely?” And my experience has been that seeing somebody's facial expressions, sharing this digital space, fills my need for human connection with them, and for the communication connection, without any of the downsides of my body has to be more exhausted. For me I have more time and more energy and more to give to the connection when I don't have to spend all my time and energy on other things that aren't involved in actually showing up and being connected to someone. You know, the whole “is digital real…” It's not even a question for me. And it's not just because I have COVID - it’s actually satisfying.

Aimi Hamraie: 

Yeah, yeah, it sounds like for you, it's like a really meaningful way to have social life and other types of participation. Did you feel that way before the pandemic, or is it something that, like, you've come to realize over the course of the last couple of years?

Corbett O’Toole: 

I've been part of disability community my entire adult life as my primary, both social and emotional community. I grew up in a working class family. My dad was a firefighter. So you kinda just accommodated each other, you know, when you did family gatherings. You did it at whoever's house had the most space, and whoever was available to take care of the kids did. “We're gonna eat when everybody's kind of hungry. We're gonna accommodate each other.” When we did the organizing for Beijing, and then the organizing for the queer disability conference, we kind of did it that way, you know. We just kind of accommodated each other. We met whenever, we did phone calls whenever everybody could kind of gather. We just kinda adapted. And so the digital part of it for me is just kind of an extension of that like, how does it work. So, Cal Montgomery? I would love to Zoom with him, and it's not accessible to him, so my relationship with him is on the phone. You kinda do what needs to be done for whoever you're with, and that kind of just being a gracious friend. It just kind of felt like it’s just another tool in the toolbox.

Aimi Hamraie: 

Yeah, I've heard other people say similar things, and this makes me wonder something: if you have a sense or experiences of whether there's a difference in how remote access or participation shows up in disabled versus non-disabled communities and spaces. Are they different? Do they do different things, are they used differently?

Corbett O’Toole: 

If we could pretend for the moment that disabled spaces means people give a shit about each other and give a shit about each other's access. And also awareness of, needs beyond your own individual disability needs. And again, in absolute terms, that non-disabled in this context means, you know, people that don't have connections to disabled people, don't have awareness even.

In my experience, disabled people know what it’s like to need access, need something that’s not in the built environment. And then the internal discussion becomes, what do I need? Do I have to have it? How do I? How could I possibly get it? And do I have to involve a non-disabled person to get it? And I feel like the fact that we do that without big deal or a judgment, or whatever, that's kind of the way I approach disability. 

[Long, low, twanging tones]

So I recently had a conversation - somebody who was preparing for a gathering in the future, and they are inviting people to apply, and the application says you have to be available from nine to five, Monday through Friday, and some weekends, and I contacted them and said, “I find this extremely problematic because I think there's another way to do it that would be more inviting.” Why don't you say, here's the meetings that have to happen during your time together, here's the resources that are available. And there's a small enough group, figure out what your access needs are, and how you’re going to accomplish this. That seems doable to me when you have a finite group of people and a specific amount of time, and you want them to develop relationships. And I think that the reason that the job was written as nine to five Monday - Friday, was because a non-disabled person was writing it, and they're sort of trying to say this is the expectation. But they didn't have the lived disability community experience. So right now, if the white man business structure narrative is in-person meetings, we have to figure out how our bodyminds can fit into that. Whereas I feel like the disabled model is, what are our bodyminds bringing to this space at this time? And how can we accomplish what we need to accomplish with the bodyminds we have in the asynchronous virtual space. It's like, the able-bodied model presumes that the bodyminds have to fit into a plan, and the disabled model is, the bodymind is where we start from, and how do we accomplish the plan with the bodyminds in the room? And I mean virtual, I don't mean room as a physical space.

Aimi Hamraie: 

It reminds me of, you know, adrienne maree brown, who wrote that book, Emergent Strategy. There's a line in there that says, “there's something that only the people in this room can do. Figure out what it is, and do it.” Yeah, it's emergent. It's not a free, given thing.

Corbett O’Toole: 

I feel like you know, nine to five, Monday through Friday, is saying the people who can accommodate five days a week, every week, the most normative schedule, get to participate. And if you don't have a bodymind that can accommodate that kind of schedule, you're not welcome. If the plan is to develop disabled people's community and leadership, we need to have a model that says we start from where we are and believe that we can accomplish, and it doesn't have to be in a normative way, you know. Kind of the basic Disability Justice type principles when Disability Justice meant the real thing, you know, like Sins Invalid stuff, and not, “let's take all the race and gender and queers out of it.” 

Aimi Hamraie: 

I'm wondering if there's something that you might say, exactly this thing that you're talking about in terms of, like, the hierarchy of disabled people, and how it shows up around remote access or the denial of remote access. Is there something about a willingness to provide or facilitate remote access that intersects with that in some way, or does remote access create those hierarchies in some way?

Corbett O’Toole: 

Well, I feel like nobody wants to tell me the truth about what they are providing, and everybody wants to pretend that what they're providing is what's quote unquote “right and acceptable.” So whether it's a disability organization that maybe provides a sign language interpreter, but no audio description and no live transcription, they're like, that's enough. And so if someone comes along and says, “can I please have facilitation for this meeting?” Or, “can we take breaks longer than five min to go to the bathroom, or can it start in the afternoon instead of the morning?” They're like, “No, no, no”…it's like, the schedule is set, and the bodymind has to fit it, and remote access embeds it in way that it's being used. We bring a lot of privileges with us. So people like me who can see and hear, we create Zoom Rooms where for people that can see and hear and can do a certain kind of schedule in the day, and that means that people that don't see or hear well and can't do that schedule in a day or that chunk of info load, or participation load, don't get to participate. So its a whole form of it's a whole form of privilege and discrimination that does not get named, and does not get owned and has no accountability. It's almost like when we had in-person meetings. If you were very lucky, the poster might say, “if you have access needs, contact so and so.” But remote access meetings don't say, “if you have access needs, contact so-and-so,” it's just like, we're pretending as if it's accessible when it's not. It’s always, access for whom?

Aimi Hamraie: 

Yeah, I've noticed, and conversations that I've had, and I think this is part of what shapes this project for me was that I talked to a lot of people who assumed providing any kinds of remote access because of COVID meant that it was accessible, and the critiques that Deaf people have brought forward about online conferences, for example, were just ignored as kind of like “Oh, well. That's just going too far.” And that's usually coming from non disabled people. So I've been really interested to just learn from people who are in disability culture about why those additional considerations are not actually additional. Like, they have to be built in and part of it in a similar way that we would talk about, you know, accessible buildings. Like, a retrofit is not as beneficial as something that is built-in, for example, and it seems like you're pointing to differences in what people think to do or know how to do, in addition to some of the inaccessibilities of the technology itself, and the ways that it has to be adapted.

Corbett O’Toole: 

And also that any request for access in remote access situations is considered like bitching and disrespectful, and “you're being ungrateful” as opposed to, “oh, I never thought about that! I wonder how we could accomplish that. Do you know how to accomplish it? Who might know how to accomplish it?” There's a way in which remote access is like Zoom is God. God is good. End of discussion.

And right now, whether it's the disabled community organizing a zoom or non-disabled community, there are enormous barriers, and nobody wants to talk about it. And talking about it is like, I’m thinking about Sara Ahmed’s, you know, “the complainer is the problem.”

[Long, low, twanging tones]

Aimi Hamraie: 

Are there any other interesting things about remote access that you want to make sure that we talk about or get on the historical record?

Corbett O’Toole: 

I feel like framing remote access as only for disabled people, is very problematic in terms of this, in terms of how the future moves forward. We always know that this is disability access is always viewed in the non-disabled world as extraneous and special and not needed, so by making remote access be an accommodation as opposed to a form of communication, the way that telephone and the cell phone and the Internet become vehicles for communication, we kind of reify the idea that it's optional. I think that that framing has not been challenged very well, and in fact, lots of disability groups kind of feed into, “we need it, we need it, we need it,” as opposed to, “how can all of us benefit? Like, why does the telephone provide a different kind of access than the Internet?” And I feel like that kind of framing is not in the public discourse, and it ignores…you know. 

I have these conversations with people all the time of, if you have a little bit of money, provide live transcription, like professional, for $125 an hour, because more people can read texts that need audio help than can read American Sign Language. So if you're gonna do one thing for a broad audience, having live transcription in English is a really useful tool to consider in your toolbox depending on who your audience is gonna be.

And people are like, “huh,” but they get like goody points in their head, like, “I'm a goody-point person because I hired an interpreter, even though I did no Deaf outreach, I have no connection to Deaf community, and nobody is here,” whereas a lot of people can lose their hearing as they age, and lots of people could really use that transcription support. 

Aimi Hamraie: 

Yeah, things that you might know from being in disability community that people wouldn’t know if they’re just checking the boxes.

Corbett O’Toole: 

Quite frankly, that's something I know from recovery community, where lots of people are like, “What? Huh? Can you say that again? Huh?” Because there are people that are not part of disability community, but need access, that we typically have siloed into disability discussions when really they're just gracious host things.

Aimi Hamraie: 

Can you describe what has happened with remote access in recovery communities? Like, was there remote access before the pandemic, what has been happening during the pandemic?

Corbett O'Toole: 

Okay, so the recovery community, I'm most familiar with is one that started in the US in the 1930s. So within that community, from the beginning people were having recovery experiences through the mail, and later through the telephone, and later through email, and all that’s, those things have been there literally since the very beginning of the organization, in part because people were really spread out, and in part because some people were not able to go to physical meetings because they were so few and they were so far away. There's been a community of people who were in technology outside of their recovery communities that have started to explore, how could recovery communities reach more people, particularly in rural areas, or for people for whom going to in person meetings wasn't useful. And there's an entire listserv and annual conference on technology within that specific community, and more recently, one of the things that happened with the pandemic was, they had to shut down. And some groups did and some groups didn’t.

So a lot of recovery meetings went online, and went online specifically on Zoom, and almost none of them provided any accessibility. The framing of the pandemic and the need for remote versus in-person gatherings has shifted, so has it shifted in the in-person community. And people that had always gone to in person meetings have literally used phrases like, “I want a real meeting.” I'm saying that in quotes, they mean an in-person meeting. But one of the things that's interesting that emerged from this is that some meetings went on Zoom and have stayed on Zoom. In fact, a woman from Australia, and a woman from the US started a 24/7 women's meeting that has been going now for over 2 years. 

So because the structure is bottom heavy, every group is independent and information feeds upwards. So decisions get made at the national level completely based on input from the local level. But people who were Zoom-based had no geographic location. So they recently created… they call them intergroups, an entire intergroup that is literally just for Zoom-based meetings. So they would have representation and decision-making throughout the organization.

The online meetings have diminished greatly in scope, but many, many people who, completely unrelated to disability, would never have thought of remote access, but have discovered they can take care of the kids and stay at home. They don't have to worry about public transportation and stay at home. And can still participate in a regular basis in their own recovery communities, and they all do it online.

Aimi Hamraie: 

Oh, so interesting. Thank you so much, Corbett. This is all so helpful and wonderful to learn about.

Corbett O’Toole: 

I’m happy to participate in whatever you’re doing. So thanks for asking me. 

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Aimi Hamraie:

You’ve been listening to Contra*, a podcast about disability, design justice and the lifeworld. Contra* is a production of the Critical Design Lab. This season’s episodes draw on our recent project the Remote Access Archive, created by a team of disabled researchers collaborating remotely. Learn more about our projects, including the Remote Access Archive at www.criticaldesignlab.com. 

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If you enjoyed this episode, please subscribe on Spotify. Rate and leave a review. 

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This season of Contra* is edited by Ilana Nevins. Kelsie Acton and Aimi Hamraie developed the episodes.

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The Contra* podcast is licensed under a Creative Commons attribution, non-commercial, share alike international 3.0 license. That means you can remix, repost or recycle any of the content as long as you cite the original source, you aren’t making money, you don’t change the credits and you share it under the same license.

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