In this episode, we begin a two-part episode with disability activist Alice Wong, who has done incredible work with social media to strengthen connections between global disability communities.
Disability media, arts, and culture
Makers, hackers, and tinkerers
Hacking culture and concepts
Disability Visibility Project (https://disabilityvisibilityproject.com/)
Disability Visibility Project, Resistance and Hope edited collection (https://disabilityvisibilityproject.com/resist/)
Alice Wong, "Assistive Technology By People With Disabilities: Part I," https://modelviewculture.com/pieces/assistive-technology-by-people-with-disabilities-part-i-introducing-team-free-to-pee and "Part II," https://modelviewculture.com/pieces/assistive-technology-by-people-with-disabilities-part-ii-designing-better-makeathons
Corbett O'Toole, Fading Scars: My Queer Disability History: https://www.reclapress.com/books/corbett-joan-otoole/
The podcast introductory segment is composed to evoke friction. It begins with sounds of a wheelchair rhythmically banging down metal steps, the putter of an elevator arriving at a person’s level, and an elevator voice saying “Floor two, Floor three.” Voices begin to define Contra*. Layered voices say “Contra is friction…Contra is…Contra is nuanced…Contra is transgressive…Contra is good trouble…Contra is collaborative…Contra is a podcast!…Contra is a space for thinking about design critically…Contra is subversive…Contra is texture…”
An electric guitar plays a single note to blend out the sound.
The rhythmic beat of an electronic drum begins and fades into the podcast introduction.
Credit: Kevin Gotkin
Music excerpt: “Tumbling Lights” by The Acid
Welcome to Contra*: the podcast about disability, design justice, and the lifeworld. This show is about the politics of accessible and critical design—broadly conceived—and how accessibility can be more than just functional or assistive. It can be conceptual, artful, and world-changing.
I’m your host, Aimi Hamraie . I am a professor at Vanderbilt University, a designer and design researcher, and the director of the Critical Design Lab, a multi-institution collaborative focused on disability, technology, and critical theory. Members of the lab collaborate on a number of projects focused on hacking ableism, speaking back to inaccessible public infrastructures, and redesigning the methods of participatory design—all using a disability culture framework. This podcast provides a window into the kinds of discussions we have within the lab, as well as the conversations we are interested in putting into motion. So in coming episodes, you’ll also hear from myself and the other designers and researchers in the lab, and we encourage you to get in touch with us via our website, www.mapping-access.com or on Twitter at @criticaldesignl
Now we have a two-part episode with disability activist Alice Wong, who has done incredible work with social media to strengthen connections between global disability communities. Alice is the founder of Crip the Vote and the Disability Visibility Project (which also has a wonderful podcast). Alice also hosts Twitter chats and has recently published an edited collection called Resistance & Hope: Crip Wisdom for the People. Alice has been recognized as a notable activist by multiple organizations, most recently by Bitch Media's 50 Most Influential Feminists of 2018. She has also shaped federal disability policy through her work with the National Council on Disability.
In this episode, which we will call episode four, Part A, I talk to Alice about the Disability Visibility Project, disabled people as makers and tinkerers, and also her contributions to articulating the concept of crip technoscience, which I have been developing through my scholarship. Crip technoscience describes the work that disabled people do to redesign the material world, often with the political intention to contest compulsory able-bodiedness, militarism, and capitalism. In anticipation of a special issue of the journal Catalyst: feminism, theory, technoscience on "crip technoscience," which I am co-editing with Kelly Fritsch, Mara Mills, and David Serlin, this episode is the first in a series of interviews with authors whose work appears in the special issue. So stay tuned for those as this season goes on.
Just as a note, in case you are listening with kids, there is some swearing in this episode.
Here's the interview.
Aimi: I am so excited to be talking to you. Thank you so much for taking time out to do this.
Alice: Well it's nice to meet you face-to-face after all these emails.
Aimi: Likewise, yeah lots to talk about. Well, so, I think you're doing really incredible work. And it's world-changing work, and I really admire the breadth of your interventions and the ways that you're thinking about disability in the material world. I thought we could start out by talking about "Crip the Vote" and the Disability Visibility Project.
Aimi: And this thing about how social media is enabling disability community to be produced in a way that maybe it hadn't been before. And so this is a thing about new technologies but also maybe some older ways of relating. And so I wonder if you could just talk about those projects, and kind of how they came about and how technology has been part of that?
Alice: Yeah, thank you for asking. So I just was at the Disability Visibility Project. It started in 2014, and this was the time when, it was a year before the 25th anniversary of the Americans with Disabilities Act. And you know at that time, I realized, I noticed there were a lot of organizations, and just different disability communities planning to celebrating this huge landmark anniversary. And I was like, you know, I'm just one individual, and I thought, "Well, what could I do as a disabled person to contribute to this?"
Alice: And I didn't have an idea, and I'm a constant listener of Storycorps, which has these short audio stories every Friday on NPR's morning edition. And I realized that there was a Storycorps location in San Francisco at the time. And I attended one of their events. And they had like you know, former storytellers on stage and talk about the power of storytelling. And they mentioned that they have community partnerships, that are vocal partnerships. And then I just went up to them afterwards I said, "Hey do you realize like there's a huge disability community in the bay area? Have you worked with our community organizations yet?"
Alice: They're like, "No, not really." So the light bulb went off and I thought, "Well, maybe I could just you know, form a partnership with them." And initially it was just gonna a one-year campaign to encourage people with disabilities to tell their stories and to have it archived as part of Storycorps. You know, part of the impetus was to not only to help celebrate and have like a 25th anniversary, as ADA but I definitely brought it to think about how there's not enough disability history out there. And how it really is so important for us to tell our stories in our own words.
Alice: And I think the idea with Storycorps that was such a great partnership is that, you know, people feel really empowered. You know, it's very loose, it's very intimate. There are no rules on like telling your story. And the brilliant part that really encouraged me to do this is that, having participate after their oral history, it has the option of archiving it at the Library of Congress. So to me that's just like, wow you know, I thought if I could get 25, 50, oral histories in a year, that's something that's gonna be there forever. And I think it's so important to capture like a zeitgeist because we don't think about the history of our community right now.
Alice: Like you and me talking right now, this is disabilities history, this is disability culture. And we often don't see it that way it's not like, you know, years later. So I thought, What's an idea? I really didn't see enough disability history or media produced by us in a really robust way. So I thought, "Well what should I call it?" I thought, "Oh disability visability is a mouthfull but it rhymes." And I thought, "Oh yeah let's just do that. And it was really through social media that made this project, it really snowballed because of Storycorps taught me that I guess that my partnership was very, unique because both of them are very vocal and short-term, for like you know, here or something.
Alice: And you know, I just thought I would use social media, and just hit you know everybody. So it was really a natural approach where there were people in Chicago and Atlanta in our disability communities there, because Storycorps has locations there. And they also have a travel, they go on tour. So I also reached out to disability communities there. It was only through social media that I did that because, you know, obviously I don't know people in every city. So social media has been a huge kind of tool to help me make projects to what it is. And you know, it started out initially as this oral history campaign.
Alice: But I realized you know, there's an online community that really has a hunger to define one another. And also to share our stories, so you know, I guess the Disability Visibility Project now is really more of an online community that creates, shares, and amplifies disability media culture. We still like to read some oral histories, and we have up till now 140 oral histories recorded. So I feel pretty good about that. But definitely, the goal is now much more about forming online communities. And encourage people to tell their stories beyond oral histories, because there are just, you know, so many ways to tell our stories now.
Aimi: Yeah. It strikes me that part of what you're doing is creating media content that adds to the archive of disability history. So your part of it is recording stories that aren't in archives like the band craft and some of these, ones that tell a very limited story and you're expanding that.
Aimi: And then the other part of it is that you're redesigning all the kind of modes of presenting information, in a way that is also tied into disability culture. So the idea of having sound and text and different ways for people to participate. Like, you know, like this like we're doing kind of having a Skype or having a phone call, but also a twitter chat.
Aimi: And that those are really things that come out of disability culture. And other people do them but the kind of layering is prioritized in the way that we tend to do things. And a lot of people just don't realize that. I think that, that's a way of designing the media landscape [crosstalk 00:08:47].
Alice: Is Crip Technoscience?
Alice: We talked today but yeah. You know yeah, I think that you know I was really mindful of, you know, when I started out it was like I tried to be very intentional about how I do things. Because you know, there's no point in creating a website or creating content if it's gonna be excluding much of our community. And I think, you know, I've had this feedback from some people with disabilities who said that you know, "Oh you know, you're using social media but don't forget that there are so many people that are left out of the social media 'revolution'."
Alice: You know, there are a lot of people who just find it still overwhelming in a lot of different ways. And you know, they just don't have the access or even the interest in social media. So I try to be really mindful of not sounding like an evangelist, because you know, I'm just trying to use as many tools that I have in front of me. And you know, this is gonna be my kind of niche in terms of how to maximize social media. But also realizing that this, you know, it's part of a larger repertoire of ways to engage.
Alice: I think there's still a lot of utility and value in a person, group, you know, what I'll want if events and meetings I think. You know, having conversations with friends is just as important as any twitter chat or podcast. So you know, while I think it's been a game changer in my life personally, it also I think would have worked with the Disability Visibility Project. I try to also remember that there's always room to improve. When I'm not an expert, I'm just trying to, you know, I'm just learning as I'm going. And you know, hopefully that over time things would become better.
Alice: You know, I think I've definitely want to hear from other people with this. Do they find you know, other things I could do through my work that I could be better? Do features, do forms of accessibility that could be layered in. I'm totally open to that, I think you know, we all try to do things, based upon our knowledge of what we think our accessibility needs.
Alice: And as you and I know it's such a very specific idea many times based on our body-minds. You know, we kind of forget about other body-minds that we may not be as familiar with. So I definitely want to leave room to explore and experiment and to improve. So, and I also want to acknowledge the privilege. You know, I think that I do have access to do proper internet services, I have a laptop.
Alice: You know, these are all kind of issues tied to class and poverty that really kind of sometimes keeps me up at night thinking like, "Who am I leaving out? Who's left behind? And how can I do better?" And I think I don't have an answer for that yet, but all I can do is just be mindful and acknowledge that kind of privilege. Yes, but I especially love and you know, value technology. You know, there's still so much in terms of inequality that I think about a lot.
Aimi: That's a really important point.
Alice: Yeah that-
Aimi: It kind of ties into conversations within disability justice about intersectionality. And not just thinking about accessibility in terms of the functional parts. Like, what do we need? Look, the answer to the question of what we need to be able to participate, is not just the physical stuff that makes it possible for us to be present. It's also the wider range of things that may you know, sometimes it gets into labor issues. Like, what else were we doing that affects our energy and our ability to be there?
Aimi: Sometimes it's about the physical spaces or the non-physical spaces, language issues, or communication issues. I'm reminded of a conversation that I was having with Valisa Thompson recently because she's going to be on the podcast as well, and some in a later episode with Moya Bailey. We haven't recorded that one yet, but Valisa also wrote a piece for the same journal issue of Catalyst that you have a piece in, coming out on Crip Technoscience about #activism.
Aimi: And just this idea that one of the things that social media has enabled for disabled people is, creating a space to be present when being physically present is not possible. And so that goes back, you know way back. But I think about the 'Occupy from Home Movement' during the 'Occupy Movement'. Like, people who are contributing from their beds and from different kind of spaces. So there's like that part of it, but as you point out there are just the physical technologies that enable us to participate in social media are also, so like they come from economic privilege.
Aimi: I think a lot about how they're produced in these horrible labor conditions and the materials that go into our iPhones and computers are mined by people who become disable through processes also. And what it means to have solidarity with them as well, while we're doing all this other stuff. And it's definitely an important thing for us to think about. And to keep thinking about accessibility in all of these different ways. So I thought we could turn to talking about Crip Technoscience a little.
Aimi: And we can talk about the straw-band kind of through that as well. So as background for our listeners, Crip Technoscience is a concept that has been coming about in disability studies, but also in design just in the last few years. It's something that I was thinking about a lot when I was writing my book on the history of universal design. Because I was finding all these examples in the archive, really of two different things. One was that there are tons of histories of disabled people as inventors and makers.
Aimi: And this is something that we're just starting to talk about historically. But of course people have been living that experience for a long time. And then the other part is that disabled people have actually been using invention and making in acts of protest for a long time. And so there's this really cool thing about you know, the sort of Crip wisdom and knowledge that goes into changing your everyday environment in more mundane ways, and how that translates into politics.
Aimi: And so there's a special of the journal Catalyst that's coming out this spring 2019, that is about this topic. And Alice you have a piece in there about that. But so I just wanted to talk to you, let's just open it up and think about this concept of disabled people as makers and inventors. And I know that you also had a recent episode of the Disability Visibility podcast that's about this. And you've bene thinking about in different ways, so what are some of your thoughts about that?
Alice: Yeah, thank you so much. I think it was a wonderful opportunity to write a piece for journalistic stuff. It's coming up in the April/May issue. And to really think about, you know, the straw-band we did this context of Crip Technoscience. Because I think, you know, well you and I are part of the disability community and we are so familiar with, all the kind of amazing ingenuity and innovations that people with disabilities do every day.
Alice: You know, it just gets me so frustrated that within this larger kind of what we think of as hacker spaces, you know maker culture. You know, the contributions by disabled people it's really not recognized or valued. You know, that to me is one of the biggest things that just really just gets me angry. Because I think so many of our contributions to the broader culture is not even seen as culture or technology or as innovations. They're those things that those people do so they can live independently, versus this broader connection to how everybody could benefit from it.
Alice: So I think that's one of things that's still a big kind of divide in terms of a given site where ableism comes up. You know, we need to make ourselves more, I guess more visible in terms of like maybe it's fine like having terms like Crip Technoscience. You know, like [inaudible 00:19:39]. But the idea of Crip culture as well, you know, that's still something that's not radical to me but it's still very radical. And I hate to use this word but disruptive to a lot of people.
Alice: It's very unsettling for a lot of people, inside the disability community and outside of it. And I see it as a celebration of who we are and a way to uninvisibilize us. And I think so much of the invisibility it's not from us it's from the larger society right? That just doesn't see us as, you know, innovators, creators. You know, just surviving itself is quite a feat for many of us. I think, you know, one great example of Crip Technoscience that before we talked today I was thinking about outside of the straw-band other examples.
Alice: And you know, I replied that there are so many people with disabilities are wheelchair users. And you know, some wheelchairs that I've used for years are phased where like manufacturers don't make the parts anymore. Or that manufacturers have settings that just don't work for them. So people actually have their wheelchairs to keep them going, to keep their lives going and keep the lifespan of the wheelchair going. I think, you know, that to me has always started like kind of informally, but then there are wants the wheelchair users, or that wants the people who've used different kind of equipment.
Alice: But that to me is a great example of Crip Technoscience because you know, they're so durable, medical, industrial complex that many of us live under. You know, insurance is a huge thing that we have to deal with. You know, lack of support, lack of just even access to the kind of just the lack of the innovation about the technology that we're using. You know, whether it's blueprint, codes, software, access like that. And yet disabled people are able to crack into those spaces and really make it their own.
Alice: And that to me is really exciting that we are kind of, give you the power that really we weren't allowed to have. I see instead of, you know, passive patients or recipients of rehabilitation or assisted technologies. Right, we're supposed to be happy with what we're given. And you know, for many of us the products that are created for us really are inadequate. And that to me is really is exciting that people are kind of creating, taking back that power, and creating it, and pushing it forward.
Aimi: Yeah I love that. I want to give a shout out to Corbett O'Toole is who is a power chair user and a disability activist. She was one of the first people who really framed this idea for me. And back when I was doing archival research for my book and I was in Berkeley, I was gonna go to the archive to look at totally different stuff. She said, "Hey a lot of wheelchair users have been hacking their own stuff for a long time.
Aimi: And you should really look at the archives of people like Ralf Hotchkiss, who created basically like a wheelchair repair shop, like a bicycle repair shop in Berkeley in the 70s. And then expanded that globally and some other people. And what I found that was really interesting is that a lot of people who are hacking their own wheelchairs, are not who we would typically think of as like an engineer.
Aimi: There are a lot of women and people of color especially and their stories are recorded. So it's really cool to read stories of disabled women in the 1950s and 60s for example, who are talking about how they built their own wheelchairs. And out of things like bicycle wheels and you know, different kind of stuff. And actually saying it doesn't look the way that people may expect a wheelchair to look. Or it functions slightly differently but because they made it, they know how to fix it.
Aimi: And that enables them to be in the world and share their knowledge in different ways. And so this is a history that has a lot of different dimensions. And it's something that definitely in the kind of like broey bicycle repair culture nobody's talking about. And in that kind of maker, hacker culture it's not talked about. And I love that you used the word disruptive, because that's one of those, kind of annoying words that [crosstalk 00:25:28] use.
Alice: I roll my eyes every time I use it but I think, you know, it's actually appropriate. And yet, you know, I use it with a bit of irony, right?
Aimi: Yeah, it's like we're the real disruptors, mister. And you know, yeah.
Alice: Yeah, if I'm gonna [inaudible 00:25:49]. I think that's what I'm curious about. I'm gonna ask you as well, you know, how do we get to that place where all of our accomplishments and knowledge and wisdom and skills are ever gonna ... And does it matter that we need that acknowledgement of our tradition? Or is it important because I think our contributions get better. And unless we call it out and name it, you know people aren't gonna know, so I don't know.
Alice: Sometimes I wonder if I got that a little internalized it wasn't going on, where I feel like we need to be seen and heard by outside of our communities. But there's that, it's not like I need their approval. But it's the sense that I want people to really see us as we are. I think that's really that's the tension I feel sometimes with myself. Like, you know, is it because is it for us as a community to really say, "Wow look at this amazing history the legacies, you know, author/Corbett.
Alice: I just again, like you know, I think owe a lot to the generations disabled women who've really just been, shared so much of theirselves and their lives with me. That it just made feel so welcome when I first moved out here to the bay area about 20 years ago. You know, they were the ones that were really that I [inaudible 00:27:41] of. Like this is, you know, part of us and I'm just like, "Wow," you know? Yet, Corbett I think in particular of us, somebody who just had this like kind of no-nonsense bad-ass style.
Alice: That really a way and I guess I was just a baby Crip you know? Get the diapers, just you know starry-eyed, and just trying to find community really. And she was one of the ones that like, "Oh yeah, you want to do this? Let's do this." You know, she's made everything seem possible. And that just you know, I will always feel like that's kind of she gave so much to so many. And it really made me think about like my own kind of responsibilities. And you know, that paying it forward as well.
Alice: So I do want to acknowledge the elders in our society that just inhabit so much wisdom that I feel like, you know, so much of that wisdom is just unless they write a book, or unless they tell their stories, it's like such anxiety that's like we're gonna lose this history. And that we need to tell our stories, because I think that sometimes the other thing about storytelling is that we don't realize what we've achieved, right? Sometimes we do things, you know, informally to our lives to make our lives better but just the little hacks and adaptations.
Alice: We don't think of it that way, we just think of it as just living our lives. And always, you know, later on upon reflection or upon somebody else's observations. Wow then we realize, "Oh my gosh. Like, I guess that wasn't safe," right? And I think we need to keep saying that these are things. And I think that's, you know, hopefully one of the reasons why you know the Disability Visibility Project exists. This is it, these are things that we should immensely proud about and just you know, embrace.
Alice: And just think about this is just the few examples that are our stories. And just perhaps you're like all of your other stories that we just don't know about yet. And that to me is incredibly exciting, the fact that this is just a small sampling that you know, I'm able to have access to in terms of being able to tell their stories. But this is really just an entry into this larger universe, this Crip universe. This Crip Technoscience universe that we're all participates in. And that to me just keeps me going.
Aimi: Mm-hmm (affirmative). Yeah I love that. And I want to think about one of the things that Corbett has contributed as her book 'Fading Scars: My Career Disability History', where she is calling on disability activists and disabled people to realize that some ways we've told our own histories have been extremely biased. For example, the oral histories in the Bancroft Library, while they're very good and important, there are very few people of color in them.
Aimi: And so part of what it seems like you're doing and one of the projects of Crip Technoscience is to expand that archive to be more inclusive. And then the other thing I think that we're sort of saying, and we should say more explicitly, is that disability culture is a maker culture. And so when I think ... I agree with you that sometimes that could feel like, "Oh why do I need non-disabled culture to recognize, you know, what we're doing? Or are we basically just reproducing this idea that like disabled people can be good workers and we're so productive and we'll manage."
Aimi: I totally like hate that idea, I don't think that, that's our only worth. But there's this other thing which is that, because non-disabled culture doesn't recognize us as makers, a lot of the time they don't recognize that disability culture is full of makers, and people who are expert tinkerers and hackers. And because of that people tend to think about disability in solely medical terms. And so if we can get people to think about the processes that we engage in on a daily basis.
Aimi: And the things that we make and the kind of questions that we ask that are part of disability culture. And that is already doing something to contest the dominant perception of disability as something that's always being acted upon by non-disabled people. And so there are so many ways that, that can grow too. Like, another piece that's in the catalyst issue I'm excited for you to read is Alice Sheppard, who's a disabled dancer. And she's writing about the ways that she takes assistive technologies like wheelchair and crutches and turns them into tools for art.
Aimi: And that's something that comes from disability culture, there's literally no one else out there who's taking disability technologies and using them for art, right? Or creating disability art that is kind of questioning what our technologies for? What our technologies do? And so those are some ways we can think about I think that get us beyond what is starting to happen in the kind of maker world.
Aimi: And also some other worlds where there's a lot of emphasis on like, "Oh we should recognize disability as diversity because we'll produce, we'll have more disabled workers and they'll be able to like grow the economy better and you know, kind of thing." And maybe that's true, I don't really care about that part of it so much.
Alice: Yeah. Or that on the flip side of you know, I see a lot of arguments. Or you know, people should care about accessibility because you know pretty soon you have all these consumers, right? There is like a commodification aspect, the capitalist aspect. You know, "Oh, you better make a design, you know, that's accessible because you're gonna reach a larger customer base." That view to me is kind of gross.
Alice: But like as if that's the rationale to do these things, versus how can we serve more people just as a social good versus, "Oh you need to increase your profit margin." But I guess that's always gonna be part of, you know, like you said with different Technoscience. Like, they always situate everything these larger contexts of, you know, the world's that we live in. You know, capitalism is a major force that's really hard to kind of escape from.
Aimi: Yeah, it's like I think that sometimes people say things like that because they assume that, that's what their audience cares about. Like, a corporation wants to know about the bottom line to make a bunch of stuff that is accessible. But on the other hand when we say things like that, we are reproducing an idea that's been very harmful to disabled people.
Aimi: Which is that we're only good when we've been rehabilitated and made a good product citizens. And that's an idea that has ties to eugenics it's also a very racist idea. And it seems so normal like in the culture that we live in. And it's kind of made worse by some new kind of like technological discourses that are circulating. And so I want to think about how Crip Technoscience can also challenge those ideas.
Aimi: And, you know, some ways that people may use Crip Technoscience for slowness, or community and culture that's not just about consumption. Because the ADA is also very much, I mean it is entirely about employment and consumption. And there's just more than that, like yes we do those things and we also do other things.
Alice: Yeah I guess I see that, it's just like maker culture is like. You know, I think there's a very narrow version of it. But there's a material face, but I really see maker culture, especially we're making our Crip Maker Culture, it includes material things like wheelchairs, like you know, just everyday products. But it also is about creating spaces and creating flexibility about creating interdependence, and about creating you know, just new ideas. Which in concepts, which is I think you know, a bit more abstract and that is tangible as a straw is tangible as you know, speakers or you know, some sort of app or device.
Alice: I think that's a thing that we need to think about in terms of the way we need to think about maker culture. It's not just about these physical and tangible things in front of us that we can see and feel and touch. It's really about expanding our ideas of what it means to exist, especially in relation to one another. And if that's the biggest and most radical about you know, disabled spaces is that we do prescribe, we do have concepts of Crip type and Crip labor. And just and that idea that not all labor has to be you know, for labor to be valuable we don't have to fix a monetary value on it, right?
Alice: I think that's the other thing to about you know, capitalism= as if like the only protective body-minds or voice that you know, have a fixed income assigned to it. And I think, you know, so many disabled people who just exist in different ways are such culture workers, you know, they just contributing so much. But there's no or very little or you know, monetary value associated with it. And then somehow that becomes invisibilized and I think that's where it's like, it's really fucked up, but in the sense we see beauty in places that people don't see beauty.
Alice: But I think that's the same with all kind of marginalized communities. You know, I think that's our superpower if we have to like, you know, throw it out and think about superpowers. But I think that's the value of why what we do offer to people is, that we see value in beauty and things that people don't really consider. And I think that is a huge, you know, underlying subtext to the maker culture that we contribute too. You know, that we see or do things in ways that the majority of folks you know, just don't even understand or see. That is like really you know, disruptive. A radical whatever you want to call it.
Aimi: Yeah. I love this so much. I think what you're articulating is also like, I'm getting a visual in my mind as you're talking about this. That there's something material or kind of designerly about creating concepts and culture. And that if we're only designing technologies as we think of them, as like these hard things that we hold it our hands or whatever. Then we're ignoring that the context around it and all the meanings that are assigned to technologies, and also interdependence, and how we interface with each other.
Aimi: Those are also things that are designed, and people make decisions about how they're configured. Like, we make decisions when we're planning events that lead to some people being able to come, and other people not being able to come. And disability culture is constantly thinking through this, not as like a problem to be solved, but as like an opportunity for experimentation, and also for solidarity. I've been really enjoying reading Leah Lakshmi Piepzna-Samarasinha's book "Carework: Dreaming Disability Justice", incredible.
Aimi: I mean that book is I think a technology, it's like a hacking manual, here's how we survive, here's how we do collective access. Here's literally a list of like if you're a chronically ill person who travels a lot, how to get through that and here are the tips. And it sort of shows in text the work that we're constantly doing with each other. And I just I love that. I'm sure similar things exist in other marginalized communities as well. And I want to think about how we can name that, and use it, like hold it up, kind of like lift it up in response to that kind of normative maker culture.
Alice: Yeah I agree. And I wonder, sometimes you know, I think about Leah's book or Corbett's book. You know, it's great to see all these books come out and just different forms of media. But I wonder like sometimes, you know, like is it because is it a book that's about, that was valid? It's like really interesting, you know, this idea that it's about this establishment kind of product.
Alice: You know, this idea that a book, that there's a publisher that found it worthy of being published in a book and that's an achievement itself. But one other hurdle is that, you know, happened with that? And so that is just great to get that book published the beginning. You know, people sometimes like also think don't know these books exist, because otherwise people would be able use them as references.
Alice: And they really hold them up as examples of you know, these are the updates that you see very clearly outlined, you know, that it's there, it's out there. But then I also think about like, there are so many other people's stories that are never gonna be published, that are never gonna be seen as marketable for a book, right? So I just, that to me is also interesting that, you know, it took a book for people to really see disability culture just like justice, within these related and concrete ways. But why do we have so much value on the book?
Alice: And I think, yeah you know, with the disability studies that's like books, journal articles, you know, those are all like these end products that are like achievements. You think what happens in that process toward those outcomes that might get lost, right? It's like that could be also fascinating that afterward that have stories that try to get published or they try to, you know, create their own stories. And you know, sometimes there are these things that interfere. And like that's what gets lost in the process.
Aimi: Yeah, that's such a good point. And I'm thinking about how like, you know, for me as someone who is in Academia, and also an activist, like the book is so normalized. Like, for my job I'm expected to write books that's how I mark progress in my career. But that there's so many other things like you said that, well first of all, the privilege of producing a book that is recognized and distributed and sold and all of those things.
Aimi: And then also even just the privileges of putting language to something. And I'm thinking about, you know, many disabled people who are non-speaking or whose language is not considered legible to a kind of like dominant body-mind, a reading, listening, kind of cognitive body-mind. And the barriers that text creates, so like you know, I have disabilities related to how long I can read every day. And the older I get the less time I can spend reading every day.
Aimi: And so I've been thinking a lot about kind of what are the other types of production? They're not recognized by my job. But one of the things that in my critical design lab that we work on, is these things called Protocols for Unfinished Technoscience. So anytime we're in the middle of making something we draw a diagram of kind of what the deal is, like how did we get there? What are the things that we're thinking about?
Aimi: And some of those diagrams are just line drawings and pictures, and some of them include text. But it's this idea of like capturing an unmade thing or something that's in the making. And that's really also something that comes out of disability culture as like expressing relationships, the flow of ideas etc. without writing a paragraph about it. Which is actually kind of, a very limiting mode of expressing an idea.
Alice: Yeah and I think these aren't linear. Not only are these not binary. But they're not always linear either, there isn't always an end goal or end outcome. And I think a lot of things that happen within, you know, Crip Culture are really just very processed based. And I think that there's so much, you know, richness in that. And sometimes that gets lost because it's, you know, not really captured in different ways. I think that's a thing too, but I think there's ... But this is always ongoing, it's not like it's ever, it's never gonna be a danger.
Alice: Because anytime you get a bunch of Crips together there's always gonna be these conversations, and these interactions that really create these processes. I mean, it's a really you know, unstoppable force. But I think that's still like there are times where you know, we get these, we get kind of hung up on these end results. And sometimes that's a function of you know, able visibility. But I think you know on capitalism as well, but I think you know, we are always in a process of evolution. You know, we're always evolving, always kind of thinking.
Alice: I mean of course like versus maker culture, sometimes I think we're more of a taker's, you know, we're always tweaking things. You know, we're always gonna be addressed and we're always reshaping ourselves. And, you know, that almost is sometimes more accurate than makers. Sometimes I think maker sounds very finite. What once was nothing, now there is something. Like there's a tinkerer who's just sometimes there's an ever flow of you know, our life we just you know, tweak things around.
Alice: But not, I might be able to create something probably brand new. But we're tweaking things, we're just you know, twisting them and just reforming that are already around us. And those are things that are sometimes thought as visible as making something. And I think that's another kind of undercurrent of you know, Crip Technoscience that's below the radar of makers, right? Is that we're really tinkerers. And that so much of that is just so like, kind of like taken for granted by all us. And we do stuff ourselves that we just aren't even kind of aware of, and I think that to me is like, that's also brilliant.
Alice: But that's also like what are some ways we could really just you know, reflect for ourselves to think, "Wow this is like fucking amazing! Like, wow we are fucking cool. Like this is a thing." And yeah like you know, "How do we make basic things like to really say this is part of our culture, this is also part of like our identity, right? I think it's that's the thing that we gotta expand our identities as the disabled people as not only just people with agency, but also people with, who just proves, who have just proved so much.
Aimi: Yeah I love that tinkerer as part of our identities. It kind of reminds me of the conversations that we sometimes have about how access is a process, and a continual negotiation, and not just one outcome on a checklist. And it's so interesting that what you're offering us is a way to think about that as part of our identities. Not just as something that we do, but as something that characterizes who we are individually and collectively.
You’ve been listening to Contra*: a podcast about disability, design justice, and the lifeworld. Contra* is a production of the Critical Design Lab, Kevin Gotkin, Aimi Hamraie, Cassandra Hartblay, Maggie Mang, Jarah Moesch, and Leah Samples. Follow us on Twitter at @criticaldesignl and learn more about our projects at http://www.mapping-access.com.
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