Gender, Sex and Tech: Continuing the Conversation
Episode 11: Interview with Tamara Banbury and Kelly Fritsch
Transcripts provided by Ganesh Pillai
Jennifer Jill Fellows: This episode comes with a content warning. We will be discussing ableism, ableist language, and eugenics.
Jill: CD Project Red’s recent game, CyberPunk 2077 promised gamers an immersive roleplaying experience where the stakes were as high as death and eternal life itself. The hype for the game was sky high when it released on December 10th 2020. I got caught up in this hype myself. I was exited. But, as often happens, the game did not live up expectations for a variety of reasons, one of which is the story. The game has a problematic, but hardly unique, narrative of what the future would look like. (cut music) which is a future where disability did not exist.
Jill: Hello, and welcome to Gender Sex and Tech: Continuing the Conversation. I’m your host, Jennifer Jill Fellows, and I’m joined by Tamara Banbury and Kelly Fritsch.
Jill: Tamara Banbury is a PhD student in communication and media studies at Carleton University, where her research focuses on the relationship of technology and the body, particularly embedded tech implants. Tamara’s master’s thesis in legal studies at Carleton focused on people she termed “voluntary cyborgs” – people who implant technology in their bodies for the enhancement or augmentation, not for medical or rehabilitative purposes. Her MA thesis titled, “Where’s my jetpack? Online communication practices and media frames of the emergent voluntary cyborg subculture” was awarded a Carleton Senate metal for outstanding academic achievement in 2017. In her PhD work, Tamara has broadened the scope of her research to include critical disability studies in her exploration of the implications of body, autonomy, identity, and morphological freedom in relation to the technological implants.
Kelly Fritsch is an Assistant Professor in the Department of Sociology and Anthropology , and the Director of Disability Justice and Crip Culture Collaboratory at Carleton University. As a critical disability studies scholar, her work engages Crip Theory and disability culture and politics to examine the workings of ableist social relations. She is co-editor of “Disability Injustice: examining criminalization in Canada,” published in 2022, and “Keywords for Radicals: the contested vocabulary of late capitalist struggle, published in 2016. She is also co-author of the book, “We move together,” published in 2021, which is a children’s book about disability, community, ableism and access. And today, Tamara and Kelly are here to discuss the representations of disability in video games. Specifically, though not exclusively, CD Projekt RED’s, Cyberpunk 2077, and also to discuss the experiences of disabled video gamers. Hi Tamara and Kelly, welcome to the show!
Tamara Banbury: HI
Kelly Fritsch: Hello
Jill: I want to start by drawing listeners’ attention to the fact that digital space is physical space. We are all occupying physical spaces right now. Our computers and the cables and servers that connect us are in physical space. As such, we’re not divorced from physical space as we make or listen to podcasts. So I am currently recording this podcast on the unceded territories of the Coast Salish peoples of the Qiqéytnation, one of the smallest nations in British Columbia, and the only one without a dedicated land base. Kelly, where are you joining us from?
Kelly: Hi there. Thanks for having me. I’m coming to you today from Ottawa, which is on the unceded territory of the Algonquin people.
Jill: And Tamara, where are you joining us from?
Tamara: I am also in Ottawa on unceded Algonquin territories.
Jill: So I wanted to begin by asking you both about your academic journeys. Tamara, what led you to an interest in Communications and Media Studies? And also, how did you become interested in cyborgs?
Tamara: So this is a bit of a story. Cyborg started innocently enough during my undergrad, I went back to university mid-career. So I’m, I’m a mature student, we’ll say. And in the course of computer science and some anthropology courses, I was volunteering my spare time at the military museum in Calgary, Alberta. It’s the second largest military museum in Canada. And its distinct because the people who work various galleries are all active duty service members. And so I, and it’s run by the Department of Defense. So I worked with a lot of veterans from Afghanistan, a lot who had life altering injuries. And there was a gentleman there who had lost both of his legs in Afghanistan. And as I got to know Cam, and the other guys at the museum and just my interesting in people in general, I started asking him about his prosthetics because military prosthetics are not the same grade and quality as what the average citizen gets.
Jill: Oh, I didn’t know that.
Tamara: Oh yes, he had some really good legs. And I became fascinated with the concept of integrating technology into your own sense of self, right? If you were born with that limb, do you accept a prosthetic limb easier than if it’s a congenital issue and you never had to say an arm, but you get a prosthetic later in life, does that arm become a part of your body or is it always a separate device?
Tamara: And sort of over the course of time, this keeps growing and everything I learn adds to this. And so my short, sexy answer of what I study – cyborgs, it gets people interested. But there’s a lot of deeper questions that I’m actually really concerned with in that subject.
Jill: Yeah. So it sounds like there’s questions of personal identity and sense of self and technology and society. And yeah, there’s a lot of fruitful, really interesting research there I would think.
Tamara: Yeah. And so, the interesting thing with the title of my master’s thesis, I was actually in legal studies. And so, there’s, there’s issues of policy and law that I’m also very interested in. But my thesis ended up going very communications and media frames with the group that I work with. And so, my advisor advised that legal studies was good for my master’s, but let’s go to comms for the PhD. So, she’s in both departments and so I’m still working with Dr. Cheryl Hamilton.
Jill: Nice. Sounds like a good advisor advice.
Tamara: Oh, yes. Oh, yes.
Jill: Kelly, can you tell us how you came to be a sociologist, and what brought you to an interest in disability studies?
Kelly: Absolutely. Yeah. So, my academic research really stems from a longstanding interest in social justice issues as it sort of intersects with social theory. And so, I actually grew up on the West Coast, Chilliwack, BC on, on Stó:lō land. And one of the things that’s really involved in, in high school, was a lot of food justice activism, so Chilliwack is largely, at least when I was growing up, a farming community, and when I was in high school, there was the emergence of genetically modified foods in the market. And so, we did a lot of actions at grocery stores and around town to contest the introduction of genetically modified food into our food systems. And so, I became really interested in power, power dynamics between community members. We got into a lot of fights with farmers who were really just trying to struggle to make a living. And so, coming to understand that there’s so many different dynamics at play, got me interested in how complex social justice issues can be. And so those kinds of issues followed me into my undergrad, where I took a class in a sociology class called “power in everyday life.” And we were really looking at all the different power relations that come to impact subjectivity in our bodies. But one of the things that was never brought up was disability.
Jill: Oh, okay.
Kelly: And I am a disabled person. And I found that, you know, while there was lots of discussions happening around gender and race and class, disability was most frequently left out of the conversation. They didn’t have a lot of language to know how to talk about my own experiences and the kinds of power relations that I was witnessing, both within social justice movements, and then externally. And so, I wrote a paper,
Jill: Found the words!
Kelly: Yeah, to develop a language, to start to speak back to what was happening. And that interests just carried me on through to my Master’s and PhD.
Jill: I think that’s awesome. I didn’t have the words, “so I wrote a paper to find the words.” I do. Yeah. That’s great. So, we know we’re going to be talking about video games today. Before we dive in to talking about Cyberpunk 2077, let’s get a little bit of background, just in terms of some of the concepts and language that we’re using. So can one of you tell me and our listeners what a cyborg is or how you define cyborgy-ness.
Tamara: That’s a contested name, depending on who you talk to. The popular culture version of a cyborg is really just part human, part machine…
Tamara: That, in the movies, people often will talk about Robocop if you’re old enough to remember that. Or Darth Vader. You know, any, any type of that, and they all typically tend to be male as well.
Tamara: When you think of a movie versions of cyborgs. But I grew up on Bionic Woman because I’m, I’m old. So, then there are groups that I work with that It’s the easiest way to describe them what I’m talking about my work to people outside the circle. They are people who do put implants into their bodies. And I should also state that I do have computer chips and magnets inside of me as well that are served no true purpose. I’ve done it myself just because I want to see what sort of what it was about. So, some of them will use cyborg, some of them will call themselves transhumanists, which we’ll get into in a second. In the disability world, I’m sure Kelly can speak to it a bit more than me, but I do know cyborg is contested on, on both sides. Pro and con.
Kelly: Yeah, absolutely. So, some disability studies and science and technology studies scholars, like Ashley Shu, say that disabled people are the real cyborgs because they incorporate technology into their bodies in this way. While other disability studies scholars like Alison Keefer say that we’re, disabled people are cyborgs, not because of their relationship to technology, but because of our relationship to politics. So, because of the ways in which we politicize the technologies that we engage with, so simply having glasses or implanting a chip in your body in itself is not enough to make us cyborg, but it actually requires a sort of orientation to technology politics that define someone as a cyborg.
Jill: Yeah, I was wondering about that because in one sense, many, many people use technology to augment their bodies, or to aid their experience of the world, so to speak, like glasses, hearing aids. But in another sense, it seemed that quite often in your chapter you were talking about something a little bit more specific. So now I’m kind of seeing that they’re getting into the weeds of this term I think is really, really helpful for seeing that there are different perspectives on who takes up the label of being a cyborg and why. And this political dimension, I think is really interesting to bring forward as well. So, you already touched on this, Tamara, but what is transhumanism?
Tamara: So again, like any other academic thing, there’s different kinds. But to boil it down fairly simply, a transhumanist is a person who believes that they should be augmenting the body. There, there is a concept or an understanding for some people that we should all be “normal,” and I am putting that in air quotes.
Jill: Yes, for our listeners, air quotes is happening.
Tamara: That there is somehow some sort of average or baseline human form and way of being. For transhumanists, they want to exceed that.
Jill: Right, so we want to transition beyond being human, overcome humanness
Tamara: Right. So, some are like human plus, right? It is not necessarily about just incorporating technology, it’s actually about and exceeding human limitations. But that opens up a lot, a lot of problems that I feel are often overlooked, or completely just disregarded in the transhumanist community itself. There are some people who identify as transhumanists, who do have some nuance and how they understand the concept. But it’s, I do find that like I find a lot of the practice and beliefs problematic, even though I do have implants in my body. Some people will call me and transhumanists and I, I would say I am not.
Jill: Can you elaborate on why you would not personally take up the label of transhumanism or what maybe are some, problematic aspects you notice in some of some transhumanists communities or transhumanist narratives?
Tamara: Some outright stated that all disabled people will want to be transhuman, that they would want to overcome their disability, their, their impairments there, whatever, in order to become not normal, but better than normal, right? That, that a future won’t exist where people are human or less than, right? Because there’s that idea if you’re more than human, there must be a less than human. And who gets thrown into that category? It borders on eugenics, where if you can add technology to your body now, or you can alter your DNA now through crisper technology, so there’s biohackers, there’s not just, you know, people putting machines into their body. They are altering their bodies through DNA alteration. What if you’re altering the germline now? You’re, you’re now passing down things through your DNA to future generations, or the in utero genetic modification of ending pregnancies based on prenatal diagnoses of Downe Syndrome I know is quite common now that people are tested, to determine whether they want to carry this fetus, to term based on potential health issues. And so, if we’re taking those people away from the future, the idea is that disability just won’t exist anymore, that, that their lives, our lives are not worth being lived.
Tamara: And I find that very problematic.
Tamara: I don’t know how to say that without laughing because to me it is just utter nonsense. I’m sorry to say.
Jill: Yes. So, there’s a ranking of humanity here that is obviously very objectionable and very problematic and discriminatory. And then there’s also this need to overcome humanity, to transcend humanity, which is part of the ranking, right? More than human, better than human. And, also, I just have a lot of questions, as a philosopher, I have a lot of questions about this overcoming of humanity thing just in other ways.
Tamara: Yeah, I’m not a humanist in my approach to understanding the world. I’m, I’m what could be called the critical post-humanists, right?, I’m, I’m of the Brai-Dotti type School where we need to actually integrate a little bit more into the world around us, and not pull humans out as exceptional.
Jill: There’s one more thing that I, I think I remember about transhumanism from your paper. And that’s this idea that in overcoming humanity, at least some transhumanists promise we’re going to do this by overcoming kind of the fleshy physical bodies that we move around in the world in, that we are going to become disembodied in some way. And that this might also give a promise of overcoming mortality itself. Can you talk a little bit about that aspect of it?
Tamara: Sure. I call that like the Ray Kurzweil specialty that’s, which for the listeners he has been funding this and working towards immortality for years. So, there’s prolonging life of your flesh vehicle, your body, so that you can live long enough for whatever ails you to be cured, in the future, or just aging to be cured. And there are people currently working on that. You could freeze yourself if you do happen to die before that happens, so cryonics. And then somehow you will be reanimated in the future. Or there is the version where you upload your consciousness to a machine and somehow are still maybe human, may be not human? But that, that part’s up in the air for a lot of people.
Jill: Better than human!
Tamara: Right. You know, I know a guy who talks about that he would love to do that. He doesn’t actually want to even be bound to earth anymore. He would like to basically be a spaceship, just traveling the universe, but be conscious for all, all of it, as himself, as though he is not his body at all, right? When I say cyborgs, like there’s, there’s a lot to this that I think most people just don’t think about, right? And so they will identify themselves as a transhumanist without delving into some of these bigger, deeper questions of what that might really mean. Because for some people they’re seeing this as a way to like make everybody equal.
Tamara: If we all have access to this technology, and they often don’t say how, they just magically in this future we will all have access to this technology, you know governments and corporations won’t keep it out of everyone’s hands, then we’re all going to be the same. And la, la, la, It’s puppies and rainbows. I find that naive. I mean, I’m, I’m, I’m a bit of a realist. I love technology. I have all sorts of funky things going on, but I, I pay for that. And it’s going to cost money. It’s not going to be equitable.
Kelly: Yeah, and people need to be able to opt out, right? And so, so much of the transhumanists dream is, is it precisely that, that we are all the same and that’s not how people work. Not everybody wants the same future. And so there needs to be opportunities for people to opt out and the transhumanist dream doesn’t allow for that.
Jill: Right, not all of us want to break out of our fleshy meat socks, so to speak.
Kelly: Or live forever.
Jill: Or live forever travelling the universe conscious the whole time. Not all of us want that.
Tamara: No. I mean, I want a solid 500 years, you know. I mean, I’m not saying like, I don’t want to prolong my life but need that opt out button, self-destruct.
Jill: So I’m going to move to what is potentially a big question. And I recognize that. And I know that what we’re saying here is not going to be the definitive last word in any stretch. But for listeners who are unfamiliar, can you talk a little bit about what critical disability theories are, or some elements that we might need when we’re thinking about cyborgs, transhumanism, and perhaps Cyberpunk 2077?
Kelly: Yes, absolutely. So, if transhumanists start from a place that think that disabled lives are not worth living, then Critical Disability Studies starts from the opposite perspective, which is that disabled lives are absolutely worth living, and that it is our social structures and institutions, through practices of ableism, that debilitate people basically and create barriers for people to have lives where they can thrive. So, critical disability studies really looks critically at this idea of human and all of the ways historically that disabled people have been left out of the category of the human, and really tried to trouble ideas of normalcy and the ways in which able-bodiedness is naturalized and the ideal way to be. So that’s sort of the starting point for conversations in disability studies. And that takes many different directions, as, as you can imagine. When it comes to technology in particular, a lot of the discussions are about how do people access technology, how do people use it? And then how are disabled people left out of both the design of technology, and left out of the imagined user. So even though disabled people use adaptive and assistive technologies more than the average person might, they’re frequently left out of the discussions of how those technologies are designed and implemented.
Jill: So, when we’re talking about these conversations about technologies, and the ways in which disabled people are often left out of the conversations or left out of kind of imagining what the technologies might be poor or how they might be used, there was something that you said in your chapter specifically about Cyberpunk 2077. So, you say the following, quoting “one of their ironic aspects of the game is that while disability as a storyline or a characteristic of the cyborg characters, disabled players have had difficulty being able to actually play the game.” So, can you speak a little bit more about why this was, or what happened in terms of the experience of disabled players this game?
Tamara: Yes. So, there were a lot of flashing light sequences with no warnings. So, anybody who might be epileptic or subject to any sensitivity to that, but even just more pragmatically, I guess, that the company CD Projekt Red, actually didn’t allow adaptive joysticks and controllers to be used to play the game. So, I had been scanning a forum specifically for Cyberpunk 2077, when we’re writing this chapter, and there was a post on there from a person who wanted to play. I couldn’t call him a player because he couldn’t play. He is a quadriplegic. And with the devices he used to play video games, that was shut down in this particular game.
Tamara: So not only is disability unmentioned theme in the game, that everybody’s augmenting. So to be augmenting, it means that there are people who don’t have limbs, because there were people with prosthetic arms and such. But just that the disabled players were just completely shut out from being able to join.
Jill: Right. So, it strikes me that this serves as a bit of an example of what Kelly was talking earlier about the ways in which these discussions and developments of technology often leave the perspectives of disabled people out, or the needs of disabled people out. Did anything happen with this? Did CD Projeckt RED, ever do anything?
Tamara: So interestingly, on the forums at the time that this was coming out, so I was researching this like within days of the game coming out so a lot of the patches that have since been implemented had not been implemented by the company at that time.
Tamara: So, it was actually other players that basically hacked together a way that the players could play the game, it was not an open-source code games so I can’t remember what they gave them on the forum doing their own mods for this game to enable as many people as possible to play who wanted to.
Jill: So, it ended up being kind of a grassroots movement that happened after the fact, rather than the company starting from a place of equity and inclusion.
Tamara: Yeah, and as somebody who’s relatively new to the Critical Disability Studies world in academia, this is incredibly common from what I’m seeing with any technology that comes out, the disabled audience is completely disregarded, and they come up with some really imaginative hacks to be able to use the technology in a way that serves them the best.
Jill: But that’s a lot of effort that people are having to put in that it really seems like should already have been in place prior to that so that these grassroot, I mean, it’s amazing that this happens, but it’s also, I imagine, quite frustrated.
Kelly: I mean, yeah, it’s really incredible how disabled people are not imagined as users for, for any technology, really, even technologies that are, that are supposedly designed for disabled people, rarely are they actually consulted as the users of those technologies. And so, you find that disabled communities come together and share their hacks and they’re tinkering so that people can have access. But those aren’t coming from, from the actual designers of these games themselves.
Tamara: Yeah, And I mean, I started out my post-secondary career as a computer science major in, and one of the reasons I actually majors to anthropology in my undergrad is because the user was almost not considered at all in any of the stuff that I was taking. The user was this faceless bodyless, abstract concept.
Jill: That sounds like transhumanism
Tamara: A little bit, but really they, the user, like almost capital U, was just going to be this person that, at the end of all of your hard work, was just going to mess it up anyways, they weren’t going to know how to use the software. Because a lot of computer science early graduates tend to work in IT departments, and there’s sort of this derogatory idea of what the end-user is going to be, and trust me, not that I was in a large program, but just the user is often not thought about at all. Maybe the marketing team, you know, at that time was thinking about users. And now, there are actual divisions of UX user experience, but they’re usually for other tech people. And they don’t think about disabled people as being tech people. So, they’re not there during the design process. They’re not there during the marketing part, probably. They’re there simply as somebody who’s going to buy it and then have to fix that themselves.
Jill: Yes, and this faceless, disembodied user probably doesn’t serve anybody’s interests particularly well because none of us are faceless, disembodied users.
Tamara: You design what you know. And I was also the only woman in my computer science course, with the exception of one professor who was retiring the year that I was taking it, or the couple of years I was in the program anyways. Like, the tech dude’s, the tech bros, like the reason that stereotype exists is based in some reality for sure.
Jill: Okay, So, let’s dive into this game shall we? Like what, what is CyberPunk 2077 for people who have not played it? Could you give a brief summary of the game perhaps?
Tamara: Well, do you want to know something maybe not funny.
Tamara: I haven’t played the game. I am just a media junkie. And my friends are gamers. They were playing and I was, I was hearing all of the excitement about it, and I was going to play it, but because I also started researching it at the same time that I was writing this chapter with Kelly, it was clear that I was not going to waste my money on this version of it. They were asking I think it was $90 for something wasn’t working.
Jill: Oh, yeah. It’s a AAA game, right?
Tamara: Yeah. And the PC version was working. I mean, it was glitchy even without taking into consideration that problematic storyline, the issues of character development and all of that, just the game itself was poorly, poorly done.
Tamara: And they’ve since like, come to nearly a $2 million settlement. There’s been patch after patch released. This is sort of one that I was waiting and see if it would ever get better, and so far it hasn’t.
Jill: Okay, So we know the game launched and there were a lot of problems for all users and additional problems for disabled users. But it isn’t just the gameplay or the glitchiness that drew the two of you to write about this. So, what’s the hook of the game? What’s the narrative of the game?
Tamara: The part that interested me was the ability to customize the character. That was the build-up for this game, that was the selling point. That’s what everybody online was waiting for. Because, I mean, in gaming, because this is a first-person role-playing game, it’s a shooter game, you immerse yourself in this world and you’re often just disembodied eyes, right? With maybe the point of a weapon in front of you, but you, your body is completely disregarded as the player, right? That’s what a first-person player game is all about. You’re basically eyeballs floating through this digital space and whatever body you do have, I mean, you’re choosing like an entire avatar at once, it’s, it’s, you’re this character, this character. Whereas with V, the character of CyberPunk 2077, you had options. You could make male, female, transgender was included as well. And then not just that, like you customized everything. Hair, eyes, height, breast size, penis size, like you really got to do at all. And people were super excited by that because it could flesh out the role playing of the game so much more because you could make it either you, a digital representation of your current physical self in a way so that really felt like you’re playing, or you could really live out this fantasy of being who you wanted to be, your who you could never be.
Tamara: Right, like in the utopian idea of gameplay like this was a pretty cool idea. It’s not choose your own adventure. There’s a bit of that to it. You get three storylines to choose from once you’ve chosen your character. But it was just this idea to me, like this is world-building on a new level for a game. And the city setting was supposed to be really immaculate. It turns out it was not. But there was this idea that this game was really going to be immersive, and personal, and customizable.
Kelly: I really think it was that sort of transhumanism of being able to have whatever kind of body that you want so that you can absolutely live out this fantasy.
Jill: The other thing I remember about CyberPunk 2077 is that you customize the character at the start, and we can talk about whether it lived up to the promise in a little bit, but you also, there are customizations that happened throughout the game, though it’s not about your hair color, or your breast size anymore. But there were still character alterations that continue throughout the game, except now it was in the form of cybernetic implants. So ,can you talk a little bit about how that mechanic worked as well?
Tamara: Yeah. So, the point was, one of the points of the character development, was to continue sort of upgrading, adding modifications to your character’s body to get you through the battles that you needed to get to for the ultimate and battle. And depending on sort of that you chose to how well these implants we’re going to work, how good the doctor was that was going to be putting these implants together for you, and that’s a whole other issue of what does the medical field actually offer current implantees because, I mean, the ultimate, the point of the game was that you were smuggling a chip that offered immortality that was embedded in your brain, and was the uploaded version of another person which was voiced by Keanu Reeves, which was another selling point of the game,
Tamara: You know, everybody wants Keanu whispering in their ear.
JF: Just in my brain, forever, immortally.
Tamara: Yeah, the augmentations, there were for weaponized purposes. Any augmentation at that point yeah, is, is weaponized. It’s not . . .
Jill: So it’s to make you a better killer.
Tamara: A better killer.
Jill: Okay? Okay. So I think we’ve already touched a little bit on how this connects to transhumanism. I mean, we’ve dropped the ball that there is a chip that grants eternal life – spoiler alert. And we’ve also talked about this idea of making an avatar a digital, either representation of who you are, or who you want to role-play as a fantasy that just kind of exists in the digital space. So, if we bring back in the problematic narratives of transhumanism, what might we notice about the design and the gameplay of Cyberpunk 2077?
Tamara: So, I mean, you said it at the beginning of our podcast, digital space is physical space, right, that we can immerse ourselves in the fantasy and unseeming reality of being online, playing video games, watching movies or whatever, right? We have different ways of having these digital lives, but they influence us, as much as we influence them. And when you see people and things represented in certain ways, if you haven’t sat down and thought about it and started questioning some things, you just accept that as sort of reality, right? Representation matters. And so, if you only see disability as something that must be overcome, that must be fixed, then it seems completely logical, going forward, that that is then translatable to real life.
Kelly: Yeah. I mean, when you start to augment the body with all of these kind of imaginative technologies, it divorces from the ways in which these technologies actually get developed, right? So, these technologies come from minerals that have to be mined, and have to be smelted and put through very significant industrial processes, to bring them to our bodies. And so that, that has a huge environmental impact. It has an impact on the laborers who have to do that work. And then it has the impact on the user. So, the video game makes it seem so simple to incorporate a bionic leg or, you know, implanted heart that can make you run faster. But these technologies have really significant impacts on our bodies and our ability to live our daily lives. They require maintenance and care. They require very invasive surgical procedures that have many risks. And they often require taking medications that also have a lot of side effects. So I think a lot of people can say that these video games are just fun fantasies, but they absolutely have impacts on our real-world understanding of what it means to be a disabled person who is augmented by assistive technology, and assumes that it is the shiniest, most innovative forms of technology that will save us when, in actual fact, so many disabled community members will tell you that it’s the very simple kinds of technology that actually make our lives better.
Jill: So this narrative, if I’m hearing you correctly, does not represent disabled people. It also, so we’ll come back to that issue of disabled people being erased in this dystopian futuristic narrative, but it also, the relationship that it builds between technology and the body, is an oversimplified one that ignores all the environmental costs and all the labor and all the risks that go into these kind of body augmentations. Possibly also the inequities and inequalities of who has access to these augmentations, or of whether or not people are coerced or forced into these situations. Do you have the free choice to say like, “No, I don’t want to have these, these chips. I don’t want Keanu Reeves in my head for all eternity, for example.” So, we can see that there is a strong transhumanist narrative here. And that, as you both pointed out, the stories that surround us, whether in digital space or not, so whether you’re talking about books, or movies, or video games, or what have you, these stories do have an effect on us, and they don’t float free of our physical space or our lived experiences. So, you both alluded to this, but just to really drive it home, is this unique to CyberPunk 2077, these, these narratives that you’ve been problematizing for us?
Tamara: No. So, from the work that I do, which, like I said, does tend towards the implants for fun, we’ll call it, that has been portrayed in the media differently over the last 10 years. Perhaps a lot of the listeners may know of Black Mirror, a very dystopic view of technology in the future. And I mean that the name of the show itself, Black Mirror, is indicating a turned off either TV screen or a computer screen, and it’s reflecting the images that it seats. And a lot of the tech stuff of implants and surveillance and things like that were really, really warning stories, quite negative, in how people view. But then there was a one of those weekly police dramas and I don’t even know which one, it’s just everybody in the community I work with, like lit up the forum boards one night, because a character, just in passing when the lights flickered in their apartment, said that “oh yeah, I have magnets implanted in my hands and does that all the time.” And we’re all like, well, one, that’s not how those work. That’s not what they do it. But also, like, holy cow, like just implanted magnet like made prime-time and was like a throwaway line. So, it becomes more and more common and more and more acceptable when it’s repeated in the media. And I think that can be said about a lot of things and the way it’s being portrayed is becoming more positive in the, in the ones that I see in the examples that I see. And I’m not saying that’s always a good thing.
Jill: To lose the problematic aspects is yeah, not always a good thing, we want to be more critical of, right?
Jill: So, we’ve said that disabled bodies are absent or erased in CyberPunk 2077, particularly, and probably in sci-fi more generally, it sounds like it’s fair to say. I think we’ve talked a little bit about how this sense kind of a problematic message. But can we loop back around and tie that in with the transhumanist stuff you were talking about earlier about what the future is projected to look like, and who is projected to be able to occupy this imagined, futuristic space?
Kelly: Yeah. I mean, I think the biggest point of that is that disability isn’t supposed to exist in the future. And so all of these different, diverse ways of being embodied are not part of this transhumanist future, are not part of this video game future, and the imagined world. So that is deeply disturbing because that’s not how human variation works. So, you know, even if we have the shiniest, most interesting innovations, there’s always going to be people that become disabled through various ways that we can’t predict in advance. And the idea that, that those people should not exist is really troubling.
Jill: Yeah, it goes back to this idea of ranking lives, of eugenics, I think. And also ranking quality of life. So, of which lives are of more value, which lives we want to see flourish in the future, and I find, I find that kind of message to be very troubling in being restrictive, and in also prescribing a value on people’s lives. And so this idea that we have a number of futuristic narratives that tell us that certain lives are going to flourish in the future and other lives, particularly the lives of disabled people, are just not going to be present because technology’s going to fix everything, is really problematic when you think about, as you said, the conscious choice to opt out or to say no, like, I don’t want these augmentations. I want this life, in this body, in this experience.
Kelly: Yeah. It also, I mean, it’s really connected to our cultural understanding of care, and the ways in which we are expected to be able to provide for ourselves at all times. So, we’re not supposed to be able to ask for care from other people, we’re supposed to be as self-sufficient as possible. And this technological dream of being able to solve all our problems by adopting innovations is really about, I think at the heart of it, about not requiring care from anyone else, or from our environments in which we’re situated. So, it’s really grounded in this individualism that imagines ourselves as separate from the environments that we live in, and that we’re supposed to be the self-responsible individuals. And the disability studies perspective on that is exactly opposite. It’s about learning to develop ways to be able to ask for the care that we need, and for our community to meet those needs. Because, because they’re not unique.
Tamara: Yeah, and I want to just raise a couple of points here. So, one, this is not a problem that is just in the future.
Tamara: This discounting of disabled lives as being valuable and worth living as is. I can’t be the only one who has heard somebody say something like this: “Oh my God, if I was in a wheelchair, I would kill myself. Oh my God. I don’t even know what I would do if I went blind. Oh my god. Like, how do you even survive?” And they say this literally to people with these disabilities. I mean, the early anti-vaccine movement: “it gives your kids autism.” And so, they would rather have children who die of preventable illness, than perhaps be autistic. What does that say to people who are autistic, or autistic people? There’s also preferences in terminology there. But this idea it’s is not just the future, that’s putting these values on disabled people’s experiences, and whether their lives are worth living, which is a phrase I don’t care for anyways. So, there’s that. I also wanted to put the counter to there are some people in the technology world who are creating some interesting technologies that I think open up some of the things that we can experience as, as humans. So, for instance, I’ve said this several times now I have a magnet in my finger. This is relatively new, about four months now that I’ve had this one. Other people have had theirs for years. So, I can do things like pick up a paperclip with my finger. I find it really handy when I dropped nails and thumb tacks. I don’t need to like pick it up and just like stick my finger up and it sticks to me. I can find metal in walls, the walls, my apartment have metal studs. I can feel electricity if I’m close to the power source of my air filter, my bedroom that I can really feel. It’s about a two-foot radius. I can feel it fuzziness in my finger from the magnet vibrating. But there are also, there is one person. She’s a fascinating artist. She had seismic sensors implanted in her body so that any earthquake over the magnitude of I believe it was 2.0, it’s been a while I would have to double-check, it’s been a while, the implant would vibrate depending on whether it was Northern or Southern Hemisphere, and the magnitude of the earthquake. So, she had a connection to the planet that no one else did. She had feelings and emotions regarding the movement of the Earth, and it means she knew immediately if this was a major earthquake or a minor earthquake, are people’s lives in danger. But she made it even more sort of troubling for us. She performs as an interpretive dancer for when she had this implant, I believe she’s removed it now, but she would stand on stage for a prescribed amount of time. I’m I believe for the time I saw it was 15 minutes, and she was stand still unless an earthquake happened in that time. And then she would do an interpretive dance based on longevity, hemisphere, magnitude, things like that. And as an audience member, I was left sitting there going, “I kind of hope there was an earthquake in the next few minutes. Oh my God. What if there’s an earthquake in the next 15 minutes and it’s a major one in like people get hurt, and I’m hoping for it?” And I’m in a room full of people and we’re all whispering to ourselves that this is what we’re waiting for. And then she started to move and we all immediately got on our phones and started checking, and we all knew immediately, you know, where this earthquake was, it was relatively minor, no major injuries and you’re left with a lot of emotions based on that. And then there is another group who, it’s still in development and testing phase, have a wearable device that you can match up with another person on the planet and wear it on your arm is, is the expected thing, so that whenever you are facing each other, it will go off, it will vibrate. And you will know no matter where on the planet you are, that you and that other person are currently facing each other, right? So there’s ways that we can connect with these technologies. It’s just that’s not the common understanding of, of a lot of implants.
Jill: Yeah, the narratives you’ve given are of implants that allow us to connect with our environment in new ways. Implants that allow us to connect or wearable devices, that allow us to connect with each other in new ways. Implants that allow us to interact with our environment in new ways. But I don’t hear you talking a lot about the kind of need for individualism and self-sustainability that Kelly brought up in an answer to the last question about kind of the transhumanist promise that we’re all going to exist individually without needing to ask for care or help.
Tamara: I’m, I’m very much in our community, collective care. That’s absolutely how we need to go.
Jill: So, it’s worth remembering that technologies can open these new phenomenological experiences for people. But that doesn’t mean that the transhumanist promise is something we should be uncritical of.
Tamara: No, it’s like a lot of other issues that we face. How can we balance things like technology is not going away? It exists. We have certain things right now. What needs to change? How do we change? Who decides what changes, right? Like there’s barring complete disaster, we have technologies, they are not going to go away. Things will come into fashion and go out of fashion. But I mean, technology is a broad term too, we have pencils. Pencils are technology, you know. Right. I mean, we wouldn’t be talking now 3000 miles apart from each other, if we didn’t have this available to us.
Jill: So, I want to return to something that was brought up earlier. And this is in conjunction with Kelly’s discussion about how we have this, these technological transhumanist promises that are replicated in CyberPunk 2077, that technologies are going to eradicate disability, are going to allow for individuals to stand alone, are going to eliminate the need for care and eventually allow us to become superhuman killing machines. One thing that you said when talking about, was that CyberPunk 2077, and these other narratives often promise that we just need a shiny new gadget and everything will be fine. But you say in your chapter, and you’ve alluded to here that, quoting from your chapter, “While, for many the focus is on shiny new innovations, often more important for the quality of life of marginalized people, are improvements to our shared social environments, such as putting in curb cuts, captioning media, making public transit accessible, publicly-funded personal care workers, ensuring the availability of accessible washrooms equitable health care and so on.” So, there’s a way in which these sci-fi narratives regarding cyborgs are selling us on these shiny new gadgets. But that doesn’t reflect the real lived experiences of disabled and marginalized people, and the kinds of technologies that are perhaps more social that we need to put more investment into. So, can you speak about that a little bit more?
Kelly: Yeah. So even just on a sort of everyday personal experience, people send me these newspaper articles about new technologies that have been developed. And they’re like, “Hey, look, wouldn’t you love this in your life?” One that was just sent to me yesterday actually showed a staircase leading into a public building in London, where the stairs transform into a wheelchair lift. And all I could think about in looking at a clip of someone using this lift is like, oh my gosh, as soon as it snows and salts is put down, that thing is not going to work and you’re not going to be able to get in and out of this building. And I mean, even just for like everyday technologies, like elevators, like I’ve had the experience of teaching in the building that only had one elevator. And the elevator goes out of service while I’m teaching and then I’m stuck in the building until the elevator can get repaired, or I have to get carried out by security down several flights of stairs. So, I think almost all disabled people who have at least physical disabilities have experiences of in which technologies fail every single day. And that from getting on a bus, getting into your house, get, like, using a car, all of these things they break, they wear out, they require maintenance. And so, in addition to technological access, we also need societies that are welcoming enough of disabled people and communities of care where we’re looking out for each other, where it becomes possible when our technologies fail us to get access other ways. And those other ways are through people power, and are through simple forums of manipulating our environments. So, I am not anti-technology. I use technology all of the time. My life absolutely depends on assistive devices, but my assistive devices break, and they don’t function and I get stuck. And when I get stuck, I rely on other people.
Jill: And it seems like a lot of that, that idea of reliance on other people, of maintenance of technologies, is not really represented in these futuristic transhumanist narratives like CyberPunk 2077. So can we talk about how the question of who can afford which technology manifests in the real-world because it doesn’t really manifest a lot in the game. I mean, I guess V has to make enough credits, or whatever it is, to afford to cash in for augmentative tech. But things are definitely kind of more concrete in the real world about who can afford it. And you can’t just go out and like be an awesome assassin-for-hire. Don’t do that, listeners.
Tamara: That is not a good job. They don’t have benefits from what I’ve heard.
Jill: But yeah, questions of who can afford it, the maintenance of it, both in terms of expense and labor? Can we talk a little bit about, about these kind of issues and why they should be represented in our narratives about tech?
Kelly: Yeah. I mean, so like electric wheelchairs and prosthetic limbs can cost anywhere from a one thousand to a hundred thousand dollars. So, a lot of the electric wheelchairs that are in public imagination cost as much as a car. And those are technologies that the companies certainly do not enable users to be able to fix themselves. They’re really designed on a closed loop where people are not supposed to take over those technologies to alter them, or to fix them. And that’s a really big problem. And there’s a whole history of disabled people coming together to learn how to do those kinds of things. But it’s certainly not encouraged.
Tamara: It’s a more extreme and often overlooked part of what has become known as the “right to repair movement.” When we talk about that in popular media, I think a lot of people just automatically think about their cell phones, right? I don’t have the right to fix my own cell phone. Inconvenient as that might be, perhaps being able to fix your own wheelchair could be useful as well. Yeah, you know questions of ownership, who owns what and when. This is a big issue in the implant community, if you have an object inside your body, do you own that? Current Western law that I know of has no firm answer on now, and that includes medical devices as well.
Jill: So pacemakers and implants…
Tamara: Pacemakers are so fun, you want me to creep you out. I got some good creepy stories.
Jill: I’m bracing myself.
Tamara: So a pacemaker, just a generic one, we’ll call it, they have different names as well, nobody knows who owns it. Most of them have, they generate data? Your human body is generating data based on whether your heart is beating properly or not. That gets uploaded either by Bluetooth, or through some sort of connection at a doctor’s office. The doctor can view it. You usually cannot, even though you generated that. Now, if there’s a malfunction in the pacemaker, which there have been, people don’t know who would be at fault. But the creepy one, pacemakers right now, current tech the batteries they last about ten years. And if you were to die with a relatively new pacemaker in your body, and your final wishes include burial, you will be buried with that pacemaker inside a view where it will continue to try to shock your heart into restarting for the next ten years.
Tamara: if you have chosen to be cremated, the funeral home will get that pacemaker removed because it cannot go in the cremation furnaces, I guess for lack of a better term there. And then it is somehow disposed of as medical waste. It cannot be re-used in areas where perhaps after being disinfected, it could be sold at a cheaper price to people who can’t afford brand new pacemakers and instead just die.
Jill: That seems like an environmentally progressive thing to do as well, to reuse it if the battery is going to last 10 years.
Tamara: Well, and maybe to save some, some people’s lives you know. There was a doctor. This is a article out of the New York Times, I believe it was November 2019ish, where he just started going to funeral homes and talking to next of kin to discuss what they might be doing with the pacemaker. And could he have it removed, triple disinfected, and sent overseas, where people had to sign consent waivers indicating they knew this was a used a piece of medical technology, but they were still willing to have an implanted, because legal ownership of objects and human bodies is very difficult to figure out.
Jill: Wow. And so, this doesn’t seem to really come up in the game, like we’re not concerned about who owns the Keanu Reeves chip in our head.
Tamara: Well, no. Actually, the point of the game is . . .
Jill: Oh that one we are, actually.
Tamara: Right. I mean, you wake up with that chip in your head, it wasn’t a choice and you’re supposed to just be the transporter for it, to be used by another corporation.
Jill: But we’re not concerned about who owns the other input. Like if I get an implant that allows me to steal health from my enemies or to jump faster, I’m not concerned that that belongs to somebody other than V, for example.
Tamara: No, and you know, who is their data being generated from this and who’s receiving that data. I get asked all the time about surveillance with my chips, right? Is somebody tracking me and no, just they’re not they’re using my phone to do that.
Jill: I am voluntarily carrying that around.
Tamara: We all do. I actually have Google smart speakers all over my house. I actually like, turned the microphone off for this just in case I happen to say the phrase that makes that start up. But yeah, people don’t really, they don’t think about a lot of the consequences and real issues that are happening right now with technology embodies. It’s super fascinating.
Kelly: I’m just going to say one other thing related to the question about cost of these devices is that for most low-income people, especially who are getting their devices through government programs which can take many years to actually access, you are completely limited in what kinds of technologies you are allowed to adopt. And so often times, your choices are extremely limited. You don’t get the new super shiny, innovative device. And, and it might not even be the kind of assistive device that would work best for your body. It doesn’t, that, that doesn’t matter. It’s just like you can only choose from a limited selection of options.
Jill: So it sounds like there’s also all these other intersectional issues that come into play when we try to sell the narrative that technology is the promise of the future. So, we have issues of income equality and inequality, tech inequality, all these kind of issues of corporate ownership, and issues of maintenance and care, right to repair and also the labor that goes into repair. So even if you have the right to repair and you’re doing it, that takes time, right? And if you don’t have the right to repair it, that is also an issue. It takes money now and access to somebody who can do the repair for you, who’s licensed to, or there’s community hacks and workarounds. So, all this stuff needs to be thought about when we’re thinking about these narratives that sci-fi as often trying to sell us about these transhumanist futures of individual transcending humanity and flourishing. Is there anything else you’d like to leave our listeners with regarding transhumanism, video games and disability?
Tamara: I would say ask for what you want. Like, we need to speak up more as consumers of different media products. If you’re not being represented and you have email or some way, ask for what you need, ask for what you want to see happen. If we don’t start creating the world that we want now, the future that we get is not going to be very good. I don’t want the corporations to make our future. I want it to be us, right?
Kelly: Yeah, I guess, I guess, yeah, that’s a really great point. So, it’s not only that technology is not our savior, but it’s also that there’s no one and just waiting in the wings to be our savior, either. It’s only going to be through collective collaboration and community building that we get a different world.