Episode 53: Contra* Remote Joy and Community with India Harville

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.

India Harville:

For me, having camera on when I was doing those disability hangouts actually normalized being in bed, lying down, actually normalized being in bed, lying down, having heating pads, like showing up in ways that disabled people are shamed into hiding. And so there was a power and utility to me in making visible the hard days inside of chronic illness and having that be held lovingly by other people. 

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 disability justice activist India Harville. It was recorded by Kelsie Acton on March 17th, 2023, via Zoom. Kelsie and India talk about the centrality of remote access and hybrid access in the chronic illness community. 

India Harville:

My name is India Harville and I live on native Akimel O'odham lands– also known as Goodyear, Arizona.I'm African American. I am a  cis-woman. If we wanted to get more specific, I identify as a subversive femme. I am a medium brown skinned African American cis-woman. I have long, black locs that have curly-fry-curls right now, and hang down to my shoulders, and I'm wearing a white dress. I'm seated on a brown sofa and behind me there are some pictures with African American families.

Kelsie Acton:

Amazing. This is Kelsie doing this interview. I'm in my late thirties. White cis-woman, brown hair that's pulled back today. Clear glasses. I am sat, as always, in the weird magnolia yellow of my room here in London.

[Jazzy upbeat chords]

Do you identify as a disabled person or a person with a disability?

India Harville:

Yes, I identify as multiply disabled.

Kelsie Acton:

And do you consider yourself to be part of disability community, or disability culture?

India Harville:

Absolutely. I think I'm located in disability community and specifically in Disability Justice sub-community.

Kelsie Acton:

Can you describe when you started using Zoom?

India Harville:

I've used Zoom for almost everything before the pandemic and during. I was using Zoom or Skype, or like other systems, for the last at least seven or eight years. For quite some time with my disabilities, I was unable to leave my home, and Zoom was one of the only ways that I could engage in community aside from people who were coming to my house.

I also used to run a hangout for disabled people online to also have community for myself.

Kelsie Acton:

Can you tell me more about the online hangouts? How did you make them happen?

India Harville:

I mean, this was much earlier in my understanding of technology and access online, and at first it was primarily for folks who were chronically ill and stuck at home, and so I just put it on social media and invited people, and then we would play games and like, get to know each other and not do much, because we all had really low spoons. 

Kelsie Acton:

Can you talk about the kind of games you would play?

India Harville:

We took a lot of games that you might play in-person, and figured out how to do them online. So we would play like 2 truths and a lie. We would play, I would maybe message someone a word, and they would pantomime it to play charades online. So like, we just got creative with taking mainstream games and figuring out how they could be done online.

Kelsie Acton:

Why were these kinds of online spaces important to you at that point?

India Harville:

It was some of my only like access to being in community, and it also put me into community with people who understood my experience. So, I wasn't experiencing the kind of ableism that often happens when you live in isolation. 

A lot of my non-disabled friends kind of abandoned me after it had been “too long for them”, quote unquote, to wanna like still wait for me, or they were mad if I missed their parties or things where maybe I thought I'd be able to go, and then I wasn't able to. And so, being in community with other folks who were having those kinds of experiences was really healing and supportive.

Kelsie Acton:

Have you ever been denied access to remote participation?

India Harville:

I feel like before the pandemic, of course! Capitalism was like, “It is not super useful or worthwhile for us to make things accessible online.” And so there were many things that I just couldn't participate in, despite having asked for a remote option, and being told that it was not possible.

Fast forward to the pandemic, and of course, suddenly, “Ooooh, capitalism needs to be able to work from home!” And “Whoa! We figured it out!” So, suddenly everything – or a lot of things – moved to being online.

And then, now, unfortunately, with a lot of people feeling like the pandemic is quote-unquote over – which is not the experience of a lot of disabled people or a lot of people in general – but now we're starting to see less-and-less hybrid and online options again. And when I make that request, I'm starting to get denied again.

Kelsie Acton:

Do you mind talking a little bit about the denials like before the pandemic? Were there ever any reasons given?

India Harville:

Yeah, in the beginning, before the pandemic, it would be things like, “Oh, no, one's asked for this. So we didn't prepare for it”, or “We don't know how to make you feel included enough”, “We don't know how to put the cameras around to give you a surround experience of the event,” I also got sometimes the “In-person access is so much to handle. We can't add online access!” And I think sometimes that was an excuse, and then sometimes I think it really was about capacity for some orgs and places.

So I got all kinds of reasons why it wasn't possible. And now people just say “The pandemic's over, and everyone wants to be in-person, so we're no longer offering online stuff.”

Kelsie Acton:

Interesting. So there's no longer the excuse of not knowing. It's just, “We just don't do this.”

India Harville:

I mean, some folks didn't really learn how to do it during the pandemic either. But yeah, now I think the awkwardness is that that know-how is available and a lot of people have done it. And now, I think the complexity is like, not many people mastered hybrid events. Most people mastered online only, or in-person only. And now hybrid is like a new place to skill-up.

Kelsie Acton:

Yeah. Can you tell me more about hybrid events like, have you ever run them yourself, or have you always been on sort of the audience side of it?

India Harville:

I've been on large teams around access. where a subset of the team is supporting the hybrid access, and I've had different roles inside of creating hybrid access, like carrying a computer to different places so that different folks have a vantage – so the people online can see a different subset of people at a moment in time, creating a space for the computers to be like participants within the space, making sure that there's a mic or a few mics that are set up to support people online, being able to hear everyone… So I'm not super tech-savvy sometimes, and I often need help with getting all the cameras right, and like the best microphone setups and those types of things. So I don't know that I could do it perfectly alone, but I've certainly been on both sides.

[Upbeat, jazzy chords]

Kelsie Acton;

So, when the pandemic started, did all the experience you'd gained creating online spaces before – did that help you?

India Harville:

Yes, I think it was super helpful that I already had a lot of games, and I had a lot of ideas of how to make online spaces work. What was different before I was working mostly with chronically ill folks, and then, during the pandemic wanting to build cross-disability access and needing to think about Deaf access and blind access. So I was a little ahead of everyone else in materials, but I still had a steep learning curve around like, how much is supportive to build better access for an online event?

Kelsie Acton:

There any moments you remember learning something new or gaining particular new skills?

India Harville:

Yeah, one moment that stands out. I went to a party that Longmore Institute put on, and it was a dance party, and they actually had live audio description. And like they would pin 3 or 4 people at a time during the party, and the audio describer would describe those people, and it ran through the language translation channel on Zoom, and I had never seen that before, and then it's something that I've learned how to incorporate in things. So that felt like a really pivotal learning moment for me. 

And then I think – this is less about online access than, like, access in general – but I also was going to something called Disrupt, and they were using multimodal boards within the space and reading everything aloud for access. I went somewhere else, and there was someone who was available to type if people didn't wanna type, or like using something external like… oh, what is it called in Google? You make these little sticky notes.

Kelsie Acton:

Hmm! Jam Board?

India Harville:

Oh, Jam Boards! Yes! So there was someone who would just take things from the chat if people couldn't put it in the Jam Board and type it on their behalf. My mind, like, kind of exploded with all of the creative access that I was learning!

Kelsie Acton:

Amazing! You talked about wanting to build cross-disability access and community when the pandemic started. Besides creating accessible online spaces, did you have other strategies for that? 

India Harville:

I think part of the challenge in the beginning was also learning how to communicate what access would be available, and to have that communication in a format that would work for the disabled communities, that it was for, and also not always succeeding, but being like “Oh, like, it's helpful if we have an ASL interpreter in the advertising, not just at the event”.

And like, I think, the other thing that was kind of challenging was figuring out how to fundraise for all the access. And then I think the other strategies that we used were, I think, for me, like working with blind consultants, working with Deaf interpreters, like, really needing to go towards the communities that I wanted to support building access for and building relationships with them. Because a lot of times it's like “okay, you have an interpreter… but you know nothing about this community. You're not in connection with them at all”, and like they saw an interpreter one time, but maybe they couldn't come. And then people stopped having an interpreter cause no one used it, but like they want to see consistency. They want to see that you understand best practices around interpreters.

And so I feel like I'm still on that learning curve, but building those relationships also really supported having folks want to come into that space.

Kelsie Acton:

You mentioned there's a lot of like denial of remote access now, as for quote-unquote “post-pandemic”. Do you see trends in, like, who's hanging on to remote and hybrid work, and who sort of re-embraced in-person?

India Harville:

I mean, sadly, the split is pretty starkly that it's disabled communities that are maintaining hybrid and online options. I would say there's a sliver of a subsection of social justice spaces that are either trying to be in solidarity, or who have a Disability Justice practice. Who are also aiming to do that. And then, of course, like in the United States, organizations who have more money because it's so expensive. Those are some of the trends of who's doing it versus not.

Funding and Access

Kelsie Acton:

Do you mind talking about the money for a bit? Because I feel like in United States, at least from my understanding of the arts world, and I suspect more broadly, the charitable world is in a really different position than a lot of other English speaking countries.

India Harville:

Yes, we're not winning the game. [laughs] Both in the arts world and beyond, a lot of funders don't want to fund access. Access sometimes gets framed as an operations cost, and then there's lots of funders who don't want to fund operations, not realizing that most people's operation budget never had enough money to cover access at any point, and that they should just support operation costs in general so I think that's one challenge. 

And then artists struggle to get funding quite a bit, and, as a general matter, like all kinds of artists, and then multiply marginalized artists are incredibly underfunded– so there's actually a lot of community creativity where folks are doing barters.

You know, there are interpreters who might do low-cost or free interpreting a few times a month, and people are rotating them into their events and things like that to help offset some of that cost. Some people are learning to do audio description themselves, so that they don't have to try and pay. Also, like, a lot of audio description just isn't queer friendly or culturally-relevant. I feel like access is like a third-to-a-half of the cost of the work that I do. That's not the kind of money that I get funds to support. 

Kelsie Acton: 

Yeah, can you talk a bit more about the community creativity? You mentioned bartering, people developing new practices of audio description– are there other, like, ingenuities that you see coming out of the total lack of money and support?

India Harville:

I think a lot of folks are starting to build, kind of – I don't know the right word for it, but, like little communities, or little subgroupings of folks who might be able to support each other. So like one person, like one person might do the audio description for a bunch of people, and in exchange, like, maybe other people are, you know, writing the image descriptions for their social media so that, like, there's some saving of labor. 

Or if you're having a low spoons day, somebody else can step in and do that. There's even a Facebook group where people will write image descriptions for other disabled folks who just want to provide that kind of access but maybe don't have the spoons themselves to do it. 

Kelsie Acton:

Are there other interesting ways that you've seen disabled people like user-hack technology for remote participation?

India Harville:

Yeah, I like, I went to something recently. There are these, like, virtual party worlds where you have an avatar, and you can move around in this space like you're in real community.

One of them is called Spatial Chat, and like, as you get closer in proximity to other people's avatars, you can hear that conversation. And as you move away, you don't hear that subset of conversation. We've been trying to make tweaks to get it captioned and make it more accessible. So I think that that is kind of cool, in the way that it simulates an in-person experience.

And there's another version of that that somebody's working on… They are having disabled people help them build disabled avatars, and they're trying to have the avatars meet your access needs. So, like, you can build in what you need. So when your avatar moves, it's like, “I will always want to hear the alt text”. And so then your avatar will always hear the alt text, or you know, if there are like things in the space and stuff like that. So there's some cool stuff happening.

Kelsie Acton:

That's fascinating. So thinking about the Spatial Chat and like the captioning – do you know, is that a conversation with the developer of the platform? Or are people just going in and like figuring out ways to do this?

India Harville:

So, I'm in conversation with the developer. It's maybe in-the-works, they're saying. But nothing has come forward yet, and we've been trying to use – like, Chrome made an extension for ASL and for captions, and it's still AI. Obviously, like, the caption parts are AI, and it's not accurate enough for great access. But we've been trying to see if it will superimpose over Spatial Chat or not. And we've been trying to figure out if there's a way to have a CART person type in the chat, like, you know, we're always trying to figure out the hacks. But nothing yet has felt like, “Oh, yeah, this is good enough.”

[Upbeat, jazzy chords]

Kelsie Acton:

Is there anything you really want to tell me? Or something, like, let's say, in a magical world, 200 years in the future, about your experiences of remote access right now?

India Harville:

I really hope that, regardless of what happens with the pandemic, there's an awareness of the importance of remote access that remains or gets stronger than it is right now, and that there is continued innovation and support in this space, because it has utilities beyond the pandemic for a large sector of folks – for a wide variety of reasons, who like need remote access to engage. And so I hope that that gets focus and funding and development. 

Kelsie Acton:

Is there anything I should have asked you that I didn't?

India Harville:

I think one question, although I don't know the answer to my own question [laughs]. But one question that feels important is like, what's missing in terms of both remote access in general – and then like accessibility within remote access? 

I feel like disabled people, as usual, are innovating the kinds of hybrid access that I've seen. Like, what I was talking about with, like, moving the computers around and stuff. And, so like, lifting up disabled brilliance inside of that work and hiring folks who've done that to train other people how to do that.

I would also say, it feels important that it always feels like disabled people are doing the most labor to create access while we are, ourselves, having the least spoons. So like, I really wanna see non-disabled people taking on the labor of creating remote access. And then around the accessibility pieces, I think Zoom made a change now, so you can have Spanish interpretation and audio description, because before you could only have one or the other, and I think that there might be a utility in building in an audio description-specific tool versus hijacking the language translation arena. 

And then this isn't like something that needs to be innovated inherently in terms of, like, technology – but normalizing how bodies are on Zoom, so that people feel comfortable having their cameras on. And you know, having their kids run by, or cooking their dinner, or lying in bed. I think, in disabled communities, those things are far more normalized, but I feel like it could expand beyond our communities. And even in our communities, there's lots of reasons why people need their camera off that are access needs, and I totally support that. And I wonder if there's a subset of folks who don't feel comfortable having their camera on, because we haven't normalized that some of these life-things are okay to have present in the Zoom space. 

But I think I'm also really interested in, like what other disabled people are like, “What's missing from disabled access?” And like sometimes I don't know what's missing, because if it's not working for that community, they're not at events to let me know. So also, a mechanism to get that information feels important.

Kelsie Acton:

Yeah, it's super interesting what you said about the camera. Just to clarify, the camera-on, what does it do for the space?

India Harville:

I think it depends, but for me, having camera-on when I was doing those disability hangouts actually normalized being in the bed, lying down, having heating pads, like showing up in ways that disabled people are shamed into like hiding. And so there was a power and a utility to me in making visible the hard days inside of chronic illness, and like having that be held lovingly by other people. So I think it serves that purpose. And then sometimes, like, when I teach dance classes online and everyone has their camera off, I think sometimes there are people in the space who would benefit from – like, some people learn through a visual channel, so if they don't see anyone else moving, then it may be harder for them to like, engage, and then, sometimes, even as an instructor like I wanna know if someone's like “it's hurting to do this movement”. And I'm like “describe it to me”, because their camera’s off, you know, and again, like, if that's for access, cool, we'll figure it out. 

Kelsie Acton:

It's super, super interesting.

[Upbeat, jazzy chords]

India Harville:

I have a question for you, if that's allowed?

Kelsie Acton:

Yes, please go for it.

India Harville:

Like, what's the most interesting thing that's come out of these interviews so far? And like, are people talking about similar things to me or really different things?

Kelsie Acton:

Lots of really similar things to you. I've also done some very cool, like, very technology-focused interviews. So talking about the mechanics of online CART, blew my mind a little bit. I thought I knew some stuff, but I did not know enough, but now I know a whole lot more. There's also been some really beautiful disability history. 

I've been digging into some of the old disability rights newsletters and thinking about those as remote participation where people would mail in poetry. And then people would print off zines on, like, tiny runs on bad paper and mail it around the country. And just thinking about community-building on a totally different timescale than, like, what we live in in the world of Twitter. And yeah.

India Harville:

Thank you. That's so cool. I actually think that brings up an important thing that I didn't say earlier, like remote access also means that, like, I'm in community with people all over the world, and all over the United States. I'm learning about innovations that are happening in other spaces that I would not otherwise know about. 

I was talking to a conference organizer yesterday who told me that they're printing their conference t-shirts to have raised lettering, and that there's something special about the paint where it has a QR Code where you can like, hear the image description by holding it up to the T-shirt, but you could also like have a tactile experience of the logo. Yeah. Like, I don't know, and I’d never known about that.

Kelsie Acton:

Whoa, my mind! Just, my mind is blown! And so, like, you go in touch with these people – I'm presuming – over social media or through the Internet. And there's this knowledge and community-building.

India Harville:

I'm doing an online conference, and I would not have met this conference organizer who's in New York unless we were doing something online. And he was telling me about how they're designing the t-shirts with that company. 

Kelsie Acton:

There's like a lot more knowledge and a lot more people out there to talk to than there was back in like the nineties.

India Harville:

Yeah. But I do love the idea of mail, and, like, you know, I think. Being online doesn't meet everybody's access needs. And so, even though it opened up something for a lot of disabled people we still have to be complicating and thinking about other forms of access. And so snail mail is, like, another access possibility.

Kelsie Acton:

Yeah, very much.

India Harville:

That feels really important. A lot of people who, whether it's the digital divide or their own disabilities, like what do you call them? EMTs? Is that the word? The like?

Kelsie Acton:

Yeah, I can't remember. I know what you're talking about, though. Yeah.

India Harville:

Haha, edit out like all of my not knowing the word, [laughs] I'm kidding.

Kelsie Acton:

[laughs] Yeah, it's disability space. There's like, there's a lot of interviews where I just stop and freeze for like thirty seconds. So you're good if you're okay with that.

India Harville:

Awesome. I'm okay with it.

[Bright rhythmic pops underneath Kelsie, India and Aimi’s voices]

Kelsie Acton:

Thank you so, so much for your time. We so appreciate it. And, like, your perspective as someone who was really creating online communities before the pandemic is super, super important to have. So thank you.

India Harville:

Thank you for doing this. I'm really glad you're doing this work, and I think it may help us to have the future I'm talking about, where this doesn't get lost.

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. 

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

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

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.

[Music fades out]

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